Looking At the World Through Rose Colored Cancer

I've Learned... Not So Much

2012-01-26T12:19:00.000-06:00

Some people slip from this mortal coil with little warning. Others of us get some inkling that the end is near, and theoretically that means that we have time to prepare ourselves and our loved ones for our inevitable passing.

So what have I done with the past three years?

I'm not entirely sure.

There are still so many things I need to do - things to knit, things to write, things to organize - and so little time and energy with which to do them. I know it's going to be impossible to do everything I want to do, and that is so frustrating. I'm pretty realistic about my situation, I think, but that doesn't mean that I'm ready to go. I wonder if anyone ever is?

I'm afraid that I haven't learned as much as I should have about people and life and even about myself in the five decades I've been here - I feel as though I should be wiser than I am, and better prepared.

I shouldn't be as worried as I am about other people, I should have more faith that things will work out. I shouldn't be as impatient with youthful foibles as I am - after all, most of us do survive the mistakes we made as youngsters, and growing up will happen with or without my interference or assistance.

I shouldn't be sweating the small stuff at this point in my life. I shouldn't get so irritated when people don't know what to say, so they say stupid stuff ("well, you LOOK good...") I shouldn't get so confused when people say things probably meant to be complimentary ("you are such an amazing/strong/fierce fighter..." - what does that mean?) and instead just enjoy the fact that they care enough about me to say something nice. I should remember to compliment others more often, to let people know how much I appreciate them and love them.

I should have a better idea of what life is all about. You would think that with several years' warning, I'd have had time to figure all this out, but I don't think I've used the time correctly, or something, because I don't feel that I'm any wiser or better a person than I was four years ago.

What is the likelihood that I will close this huge gap in wisdom and accomplishment in a few short months, when I haven't done so in the last few years?

Which means that I will go out pretty much in the same state that I came in... wrinkled, unevenly developed, flawed, and human.

Rats.

Latest

2012-01-19T17:15:00.000-06:00

Well, it was a pretty darned demoralizing visit with Dr. Bouncy today.

We looked at my just-pre-Leg-Explosion scans.

For one thing, we saw why Dr. B said that ablation was not an option for the pelvis/hip tumor. It is not a nice tame sphere of haywire cells. It is a Blob Of Evil that wraps pretty much around and through the entire pelvic and femur area. It has destroyed most of the bone, and is strangling everything else around it, including blood flow - thus the Amazing Expandable Leg. And it is growing at breakneck speed, to the point where I can feel the difference between how it is one day and how it is two days later.

My guess is that although some of the other tumors were responding mildly to some of the chemo treatments, that tumor was busily wrapping itself around me, unchecked.

Ugh.

I was told earlier about the rib tumor that is expanding itself into the top section of my lung. But it turns out I also have an independent tumor in my liver.

Which is the first of what is likely to be many. Fairly soon, if this last treatment doesn't work.

Prognosis is not good. This was illustrated by the fact that Dr. Bouncy not only didn't conspicuously avoid the whole End Of Life/Hospice Care conversation - he initiated it.

So if this treatment works better than the others, I'll have some months ahead. Probably not a year. If it doesn't - well, of course nobody can say for certain, but we can probably count the weeks pretty easily.

Not what we wanted to hear, even though we were fairly certain of the likely report long before we entered the office.

There are a lot of practical decisions and work that are going to need doing in the next few weeks.

No rest for the wicked, I guess...

Newest Info

2012-01-12T22:27:00.000-06:00

**Newest info: No pneumonia, but multiple clots in my lungs, some fluid in my lungs, my heart may be under too much stress, I have a large but relatively new tumor coming out of my rib and protruding right through/into my left lung, my hemoglobin is too low, as is my potassium. I'm having a lot of trouble eating much of anything - I'll have to talk to the nutrition folks at the hospital to see if they can bring something very small every two hours, rather than a bigger meal every five. Not that I'm likely to eat much of that, either (not a big fan of the company that provides the hospital food here, I'm afraid).

The coumadin may not be thinning my blood adequately, so I'll be either combining it with another thinner that must be injected into my stomach every day (which means I'll have to do it myself... yeah, that'll be great...) or doing just the injected one.

I'll be in the hospital for at least two more days, maybe more. They'll want to feel comfortable that I'm not throwing more clots and that I'm unlikely to make more.

My bone marrow isn't up to the job of making more cells, so I may need to start having blood infusions. New chemo routine, so we'll see if that helps. This one will be my last 'reasonable' resort - after this, it's more extreme drugs with less record of success, when the more normally successful ones have already failed. So... you know.

***Much of this post is copied from my latest Facebook update - energy is not easy to come by, so I'm conserving where I can. Sorry about that...*

They Just Can't Get Enough Of Me...

2012-01-11T13:03:00.000-06:00

Two glorious days of uninterrupted laying in my own comfy bed... and now I'm back in the hospital, with pneumonia and who knows what.

Yeah, they just can't get enough of me.

We counted, and I was off the LDN for 9 days before all this crud started happening. I'm just saying...

Anyway, it's going to be another two or more days of cable television, I guess. Yay?

Note: No, Sam, not all hospitals in the US serve decent food. The nurses here are nearly as sweet as the ones in Rapid City, and the rooms are nearly as nice, but the food is mostly inedible. Scott occasionally sneaks in a sandwich for me, bless his heart.* Thank goodness for family support!

*I've been eating very little for a week, and my weight has gone slightly up. I think this is due to the methadone, and worry that this is going to be a problem once I start eating reasonably again. Argh!!!

Partly Exciting, Mostly Boring

2012-01-05T08:00:00.000-06:00

The big news is that I am posting this from the hospital.

On Monday morning we went to the movies with our son and his fiance - the new Sherlock Holmes movie, which we would give a mixed review, I'll alert you if son does a review on it - and when I got up from the chair after a rather uncomfortable two hours, I discovered that my left leg was considerably wider than my right leg.

We all went to lunch and played one of the extended versions of Pandemic, which was fun (we won, after a depressingly long run of losing the world's population - curse you, black plague!!). When we got home, the leg was about twice the size it should be, so I called the on-call person at my oncologist's office.

Unfortunately, I got The Jerk (I've gotten him before - he refuses to give information or advice, which makes him pretty much useless). As usual, he just asked me what I wanted to do, and told me I could try a dose of lasix if I thought it might help. Yeah, thanks, that really was useful.

Anyway, I took the diuretic, and two hours later nothing had changed. I called the pharmacist, who told me that the lasix should have hit peak usefulness at 1-1.5 hours after dosing. I called the on-call line again, and this time got a doctor who actually cared. She recommended a second dose, but told me to call back if the pain or swelling got worse, or if an area became inflamed.

I took a second dose and went to bed. At 4am the pain became more localized to my inner thigh and groin, and was definitely worse. I called the on-call gal again, and she told me to get to the ER, to tell them to give me an ultrasound, and then to have her paged with the results asap.

So off we went to the ER - St. Joseph's has a wonderful ER, so that's the hospital we went to, rather than the one attached to my Oncologist's office.

Turns out I have a giant blood clot, from my groin to my knee. And of course, with my usual pattern of drug reactions, the drugs are not working as they should, and I'm getting unusual side effects. Faux expressions of surprise, anyone?

So here I am, in the hospital, bored to tears and pretty much immobilized. My big hope for the near future is that they will let me walk to the bathroom instead of having to use the commode - but my leg seems to be getting worse, pain-wise, so I'm not sure they'll let me wander across the entire room like that.

If anyone is interested, I'm at St. Joseph's Hospital in downtown St. Paul, and it looks like I will be here until at least Saturday (first they said Thursday, but my blood is not cooperating).

The clot evidently is being caused by the cancer. This is evidently not unusual, but it is depressing, since it is a sign of the advanced state of my tumors. Which brings me to the other news:

My scan results are back. I have had a significant progression, with more active and larger existing tumors and several new ones added. This is not surprising news, really, but it is depressing. We're running out of treatment options, and remaining options are less likely to be effective than the ones we've tried (which means Pretty Much Useless) and more likely to have really unpleasant side effects.

So. I'll report on my 'What Now?' conversation with Dr. Bouncy when I have it - I was supposed to be at his office today, but obviously that's not going to happen now. I am hoping that either he will call me here, or that we can have that talk next week when I am done with my hospital stay; I'd like to make the decisions and start my next treatment asap, since the cancer has pretty much been growing unchecked for two months.

What's with the holiday season always coming with bad health news? Diagnosis, progressions, they all seem to come at that time of year. I'm not liking that pattern...

*Sigh...*

Old Year, New Year...

2012-01-01T15:14:00.000-06:00

It's been a while, so I'll catch you up.

After the first month of Xeloda, which has ramped up the pain margin considerably, my tumor markers went up. But Dr. Bouncy says that Xeloda sometimes takes a while to kick in, so he wanted me to continue for another month. With some reluctance, I agreed; in one hand, giving the tumors more time to grow unchecked is really scary when they are at the level they are at with me - on the other hand, my treatment options are rapidly running out, so we have to give any reasonable possibility the old college try.

So this past week I had a tumor marker check, a PET/CT scan, and an MRI scan (to check up on that pesky softball-sized soft tissue tumor in my left pelvis, which I think has adhesions and is a constant source of tearing pain). I've never had serious pain with the scans before, but the CT scan was an agony this time. I really thought I wasn't going to make it to the end without moving, and frankly I was just short of tears by the time they let me out. On the bright side, that made the MRI seem less awful than it would have been otherwise - it was painful, but since they let you know how many minutes each scan was going to take, I could sort of count it down. When you don't have a sense of time passing, pain can seem overwhelming; when you know you only have to bear it for another three minutes, you can talk yourself through it.

I won't know how the scans turn out until next Thursday, when I see Dr. Bouncy and make plans for the immediate future. I can potentially find out the results of the tumor marker test on Tuesday - I'm not sure whether I will ask or not. There are times when knowing the answer IS worse than not knowing for sure...

The other health-related issue is that for a couple months now the pain in my hip has become more and more debilitating, to the point where for weeks I was getting less than two hours of sleep per day. Often none at all. Added to this, I became nearly completely bed-bound. Between the exhaustion and the pain, I could no longer put off the inevitable - I quit the LDN and went to the palliative care clinic, where they prescribed narcotics.

As expected, I currently am getting more side effects than benefit... but I am getting a bit more sleep, which at least keeps me strong enough to avoid indulging in distressing crying jags during the wee small hours of the night (hard on me, since it deregulates an already weak breathing system, and scary for poor Scott - I'm not generally a crier, so he correctly interprets the sudden change as a major issue).

On the bright side, Christmas was family-filled and everything that Christmas should be. I am unbelievably grateful for my kind, loving, supportive (and talented!) family and friends. If one has to be in pain, you couldn't ask for better distractions.

More later...

Xeloda, Week 4

2011-12-02T19:09:00.001-06:00

It's my fourth week on the Xeloda: 3,000mg, which is 3 pills twice a day, on a 7 Days On/7Days Off schedule.

The side effects have not been good for me, which is not surprising. Extreme fatigue, muscle weakness, heartburn, diarrhea, abdominal discomfort, numbness and tingling and a feeling like splinters in my feet and fingers... and worst of all for me, extreme joint pain in my hips and left leg, plus back pain and muscle cramping.

This is bad, but I count pain (even the debilitating sort, which this is - I'm nearly housebound the entire time, and pretty much w-bound for a good amount of time) as less awful than depression, so at the moment I prefer this to the Gemzar, all things being equal. But that equality thing turns out to be a significant issue.

Unfortunately, I just found out that my recent tumor markers showed a fairly significant rise - around 20%. Not entirely a surprise, since the little tumor in my chest wall is showing up again, and it seems to be a pretty reliable reflection of what is going on elsewhere in my body. But definitely not what I wanted to hear.

Not what Dr. Bouncy wanted to hear, either - during my exam on Tuesday he insisted that he didn't think I was right about that little tumor, he thought it was the same size as before. But I am more sensitive to subtle changes, since I live with the stupid thing. As he said again while reporting on this latest result today, I know what I'm talking about when it comes to what's going on in my body. We just generally wish this was not the case, since my reports and prognostications are usually on the gloomy side.

That said, he wants to give the Xeloda more time to work. Evidently it can sometimes cause tumor flare before it brings things down, and sometimes it just plain takes a while to kick in. I will be having another marker test and a couple scans (CT/PET/MRI) at the beginning of January, so he wants to see how things look then before making a decision to go back to the dreaded Gemzar (and accompanying steroids, Benadryl, etc).

This is very disheartening. Well, terrifying, really - when your tumor load is heavy, even small increases are significant, and when your cancer is agressive you don't like to give it time to grow with failing treatments. Especially treatments that pretty much take away your quality of life while they are (possibly) doing nothing to stop the Monster.

I was hoping to take an extra week off the Xeloda around Christmas. Before we knew about the rise in markers, Dr. Bouncy didn't think this would be a problem. Now I'm not so sure... but oh, I don't want to feel sick and be in pain during Christmas week.

I have a nurse appointment on the 13th, I'll have her ask Dr. Bouncy about it again at that point, see what he thinks.

Damn.

Xeloda, Week 1

2011-11-16T08:53:00.000-06:00

I've had my first 1-week round of Xeloda. We are doing it on an an every-other-week basis, since Dr. Bouncy went to a conference wherein a specialist claimed that this resulted in fewer side effects (or less intense ones, I'm not sure) and similar results cancer-wise.

So far, I've found that the joint/muscle/bone pain, weakness, and fatigue are pretty (cripplingly) intense, that the gastro-intestinal upset is moderate, and that I am already getting some hand/foot syndrome symptoms. On the other hand, I don't have the overall feeling of being really sick and miserable that I had with the Gemzar, and I don't have the depression - which of itself is very hard for me to deal with. So on the whole, if the symptoms don't get significantly worse (ha, ha), I think I prefer the Xeloda to the Gemzar.

I am currently at a moderate dosage - 3,000mg. Dr. Bouncy started me at 4,000, but when I asked about the high dosage, given my history with drugs in general and chemo drugs specifically, he lowered the dosage right away. I don't know what the side effect level is at which they decide to try a lower dose. I will be talking to a nurse practitioner next Monday, and will ask her about that.

It will be another couple weeks before we know if the Xeloda is doing anything to shrink the tumors... and even then, we'll just be using the blood markers as a guesstimate. I won't be able to have another scan until the beginning of January - that will be the real test.

So for now, it's mostly hope that is holding things together... not the hope of a cure, but the hope that things will stay stable or get a little bit better, so that I can hold on long enough to meet and enjoy my new granddaughter, who is due in February. Wish me luck!

Waiting...

2011-11-06T11:12:00.001-06:00

This past couple weeks has been a waiting game, for the most part - waiting to see if we could get the financing set up for the new chemo. Evidently my insurance company is cheerfully willing to spend tens of thousands of dollars every month to have me get chemo by infusion, but won't spend less than a thousand per month for chemo I have to take orally. So I had to apply to various private charitable orgs in order to get funding. Funding that will work for this year (two months), but which will have to be applied for all over again in January, with no guarantee of approval.

Are we having fun yet?

So as of Friday, the funding is there for November and December, and the chemo (Xeloda) is on its way. I'll start on Monday, theoretically.

I have reservations. I've been having gastro-intestinal issues with the Gemzar, and the Xeloda is even more likely to cause issues there. And they have me on a fairly high dosage, which seems unwise given my history with chemo (and drugs in general). But we'll give it a shot, I guess - there aren't a lot of options available any more, so we've got to try what we can.

Wish me luck...

What I Did On My (not-quite-summer) Vacation

2011-10-28T16:15:00.000-05:00

I've been gone for a while.

First, I went on what was intended to be a vacation to South Dakota with a dear young friend from the UK. The first day went very well, but the rest of the week turned a bit darker, as my friend became very ill, indeed. In fact, she spent the entire time getting a good inside look at the American health care system, spending an entire week in hospital. Poor Sam!! Luckily she did eventually recover enough to escape her doctors' clutches, and is now safely home and recuperating.

In the meantime, it turns out that between the tiring expedition and my not-so-great reaction to the Gemzar and the extra steroids it has forced on me, my system has pretty much had it, and has gone on strike. Fatigue, digestive issues, muscle cramps, joint and bone pain, and much, much more - these things have kept me mostly housebound and computer-unfriendly for a while now.

The good news is that Dr. Bouncy took more tests yesterday to see if we can figure out what is going on... and we are going to try a different chemo treatment, to see if perhaps it might give me a better quality of life.

And in the meantime, I have a day here and there that isn't too awful - and on those days, I try to do something fun. I had tea with Sam and Gretchen last week, and had a trial 'walk' with my folks yesterday, using the new wheelchair. It's been more than a year since I really got out and about outside, and it was glorious.

Anyway, that's what's been going on. I'll report more next week, when I start the new treatment and know more about what's going on. Until then, get out and enjoy what is left of the lovely autumn weather and foliage - it really is a Good Thing!!

Awareness Worth Having

2011-10-09T19:11:00.000-05:00

My friend Donna is posting some really great information about breast cancer in honor of Breast Cancer Awareness Month. All the marketing of Pink glitz and glam, all the Pink pies and ribbons and shirts and motorcycles and cars, all the ballyhoo... it can distract us from some of the more important facts that we really need to get across about breast cancer. It can lead us to underestimate the seriousness about the disease - it can lead us to even believe that breast cancer is curable.

Unfortunately, breast cancer is not curable. Not even the most 'mild' case is curable. The best we have achieved, with all our research and our advances in treatment, is remission. Remission means that the cancer in your body is not currently detectable by our current technology... but it does not mean the cancer is gone. Breast cancer tends to recur, and more often than not when it recurs, it does so in its deadly form.
And there is nothing pinkly pretty about metastatic breast cancer.

So let's get ourselves truly educated about breast cancer. Let's be aware about its realities.

Donna's posts are a good place to start. Here are links to her most recent Awareness Points:

Breast Cancer Subtypes

10 Truths About Breast Cancer

Breast Cancer Remission

Estrogen As a Risk Factor

* My thanks to Donna, whose blog is a constant source of inspiration and information, and whose person is a blessing, indeed!

Breast Cancer Awareness Month Announcement

2011-10-03T22:15:00.004-05:00

Yes, it's that time of year when people suspect us of wearing pink for a purpose. Don't worry, I'm not going to get into the politics of all that right now.

Right now, in honor of Breast Cancer Awareness Month, I'm going to remind you all about Breast Cancer Recovery, a fabulous organization staffed by a group of women to whom I am very proud to be even vaguely connected. Link on over to their website, and if you have (or have had) breast cancer, do yourself a favor and sign up for one of their incredible spirit-reviving retreats. And if you don't have BC, link over and donate a little something, and know that you have made the world a better place.

And if you happen to live anywhere near Wisconsin, consider checking out the folks below who are doing some nice things to support Breast Cancer Recovery during the month of October:

Breast Bra Competition 08/31 - 10/15/2011:

Plum Crazy presents their 3rd Annual Breast Bra Competition! Bring in your decorated bra with a $10.00 donation and you can win big!! All proceeds will benefit Breast Cancer Recovery. C'mon, let's decorate the ceiling with bras!!! Are you a survivor? Please join us for a private judging night! Call us at 608-839-5697 if you are interested! Plum Crazy is located in Cottage Grove, WI visit our website at www.shopplumcrazy.com for more store information.

Madison College offers pink hair extensions 10/1- 10/31/2011:

During the month of October, Madison College Salon (formerly MATC) has pink extensions! Proceeds from this will benefit Breast Cancer Recovery.
Salon Services:
The Madison College Salon is located at 211 N. Carroll Street, just two blocks off of State Street in downtown Madison. Please click here to view our salon services performed by students and supervised by licensed instructors.
Call today to schedule your appointment and ask about our monthly specials. 608-258-2404

Associated Bank Fundraiser 10/1- 10/31/2011:

During the month of October Associated Bank will be raising awareness about Breast Cancer Recovery by selling 1 dollar donate now cards to their costumers at the Fish Hatchery Road and Chapel Valley branch in Madison, WI.

Drink for Pink at Pasquel's 10/1 - 10/31/2011:

10% of all Pink Margarita and Mejor Pink Luxury Tequila sales will be donated to Breast Cancer Recovery. This promotion will take place at both Pasquel's Restaurants located at 1851 Monroe St and 670 North Midvale Boulevard in Madison, WI.

Verlo Mattress Factory Fundraiser 10/1 - 10/31/2011:

As part of its observance of Breast Cancer Awareness Month in October, Verlo Mattress Factory Stores is highlighting the work of Breast Cancer Recovery, a Madison-based non-profit, and some of the women the agency serves. For every bed sold in the month of October certain Verlo Mattress franchises will donate to Breast Cancer Recovery. Please contact your local Verlo Factory to see if they are participating.

Nicole's Creation Fundraiser 10/01 - 12/31/2011:

$1 of every breacelet and lanyard sold will be donated to Breast Cancer Recovery. Click here to view and order these beautiful creations!

Community Change Double Days 10/09/2011 - 10/15/2011:

Order from Community Change during the week of October 9 and double the proceeds will benefit Breast Cancer Recovery. Please visit http://www.thecommunitychange.com for more information.

Wisconsinmade.com fundraiser 10/11 - 10/31/2011:

Wisconsinmade.com, an online food and gift store, is donating 10 percent of Internet sales from October 11- 31 to support Breast Cancer Recovery and Wisconsin Breast Cancer Coalition. Please visit wiconsinmade.com to participate.

Bras For a Cause 10/13/2011:

The Women's Council of Realtors puts on a fun filled event, Bras for a Cause at the Edgewater Hotel. This is an evening filled with fun as local men show off their bras in a runway show. Proceeds will benefit Breast Cancer Recovery. Please click here for more information.

Something To Read

2011-09-18T21:47:00.000-05:00

Friend Donna has posted about a particular bit of research that may be promising for treating us metastatic breast cancer folk. As with many other potential treatments for truly deadly and horrendous diseases, this one involves stem cell research. Please read about it - there may not be anything solid we can do to further the cause at the moment, but it's good to be aware and ready to move (in the right direction) when the time comes.

A Bit Of This, A Bit Of That

2011-09-07T04:35:00.003-05:00

So a few brief updates:

Celebrate!!

First of all, my Chemo Buddy Jill just 'graduated' today. From here until at least next spring, she won't have to have any treatments or scans or anything, barring unexpected happenstance (which darn well better not occur, or I will have very stern words for the Powers That Be).

I have mixed feelings - on one hand, I will miss her wonderful spirit and entertaining company, and that of her husband, as well. I also have to admit to a tinge of jealousy.

On the other hand, I'm just thrilled for her, and have very high hopes that she will do excellently. And it's always heartening to get good news when dealing with this monster. I wish Jill health and happiness for many years to come!

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Scylla and Charybdis

On the disconcerting side, my chemo nurse pointed out that my red cell count (at least the immature ones) were sufficient, and that my continued shortness of breath and extreme fatigue/weakness was probably a sign of heart damage. This is not uncommon with many of the chemos, including the ones I have had, and the risks are compounded by the pre-med steroids (see below).

Lucky me. The disconcerting thing is that in a way, dropping dead of a heart attack would be relatively merciful, compared to the death that my particular form of cancer would give me. It seems pitiful and cruel that I might be put in the position of actually wishing to have a heart attack. And of course, it also is pitiful and cruel that the chemo that theoretically is giving me more time with functioning hips/spine is at the same time taking away my ability to take advantage of those things - I am so fatigued and weak that most days I can't walk across a room without getting out of breath and having to sit down and/or take a nap. Forget doing anything useful around the house, or doing things with friends and family - I rarely have the strength any more, even when the chemo side effects are less awful. I am turning into a useless lump, which is not much fun for me and unkind to those who care for me.

Not to mention that I would hate to have my death listed on the 'heart disease' statistics, rather than the cancer death stats. This is not unusual, and allows a couple statistical boondoggles that I detest. By listing chemo-damage deaths to be listed as caused by heart disease rather than cancer or chemo-caused deaths, it makes the oncology stats look much more promising than they actually are. It also allows the pharmaceutical companies to simultaneously not take responsibility for chemo-caused deaths AND gives them even more excuse to push more and more people into taking statins and other highly profitable 'chronic disease' drugs by artificially inflating the 'heart disease' statistics.

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Not Dead Yet...

This last week has been a mixed bag, side-effect-wise. Dr. Bouncy raised my steroid prescription with my chemo pre-meds, and added another dose at the end of the week. This means that the risks (including, ahem, heart damage) and side effects from the steroids are increased, which is not good. But on the other hand, my fever stayed within reasonable bounds (99-101), and I got a few extra days of a bit less exhausted and a bit less bone/joint pain.

Which means a few more days of relative functionality - weak and puffy and fluish, but able to sit up and watch TV and write a few emails, which is an improvement on spending the entire week in bed, trying not to cry. I even got two evenings of dining with friends and family this holiday weekend, although I spent a good part of one of them napping (sorry, mom - hopefully tromping us soundly in Bridge helped to make up for the rudeness of the early neglect...).

The chemo effects are accumulative, so things will be harder this week and harder again next week, but I am hopeful that I'll get at least a couple not-too-terrible days out of it. At this point I am grateful for small favors.

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Notice

Blogger friend Donna has an announcement about a new Phase II trial for metastatic breast cancer patients. It's worth going over there to check it out if you think you might be interested in volunteering. That said: I do believe in trials, especially ones that are checking out drugs that are relatively new to breast cancer treatment, but please also check out my comment on Donna's post - I do think this one needs a bit of research and weighing in the balance before a decision should be made.

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Thanks!

My poor sister fell last week and tore up a lot of ligaments and muscles on her entire right side, leaving her in a good deal of pain and pretty much unable to do anything. There has also been a death in the family this week. This means that my mom has been very busy taking sis to hospital and doctors offices, as well as doing a lot of nursing her at home, and now she has a visitation to somehow wedge into her already overwhelming schedule.

Dad stepped up to the plate today; he drove me to chemo, was not at all cranky when it turned out that they delayed my treatment for several hours (post-holiday overbooking led to several timing errors and issues), and ran out to make me a very nice lunch when it turned out I was going to need it during my dragged-out infusion. It was a real blessing; I was feeling really woozy from the high-dose Benadryl, among other things, and getting that food really helped get me 'grounded' and much less shaky, thank goodness.

My son has promised to take me to treatment on Friday, as he did last week, in order to spare my mom the trouble during what has been a very stressful week for her.

Thanks to Dad and to Bren. I appreciate your help and company very much, indeed.

And thanks to Mom for volunteering for the job most weeks. I don't know what I'd do without you, but I know it wouldn't look good. You are the best!

Yeah, Well...

2011-08-31T23:45:00.001-05:00

The meeting with Dr. Bouncy was not particularly encouraging.

In fact, he admitted that we are running out of good options, and actually told me that he would understand if and when I decided I wanted to stop treatment and switch to hospice care. His list of remaining options sounded fairly awful, and from his expression while listing them, I suspect they hold little hope and much worse side effects.

He asked for a hug, and got a little teary-eyed.

Needless to say, this was all very different from his usual optimistic 'never say die' attitude. Not a good sign.

For the moment, he doesn't feel that a scan this soon would be a good idea. He lowered the dosage on the Gemzar and raised the dosage on the steroids, hoping to balance lowering of side effects against lowering of potential effectiveness. We will see how it goes.

In the meantime, he says that he will see if he can get me Capecitabine from the pharmaceutical company on a 'compassionate use' basis, since our insurance will not cover the prescription and the private cost would be nearly half of our already inadequate income. It's the last of the 'less awful, potentially more effective' chemo options, so please cross your fingers or pray or send good thoughts (whichever seems best to you) in my direction, in hopes that he will be successful.

Still Here... Sort Of

2011-08-23T15:27:00.000-05:00

I know I haven't written lately.

That is because I haven't had anything to say. I haven't had anything to say because I haven't been able to do much, other than lay in bed and be miserable.

The Gemzar is not agreeing with me. This last week I spent nearly entirely in bed with a high fever (up to the mid 103's). There's no evidence of infection, which is the concern with high fevers and chemo. And fever is not unusual with Gemzar, in particular. It's just that usually people get 'flu symptoms' for one or two days. I get them for five or six, and I get them hard.

The question is - is my suffering now doing me enough good that it will buy me functional time later? Or am I just suffering and losing time?

And we don't know the answer to that. I don't know when we will. But I'll let you know as soon as I know.

Until then, I'm hanging in there as best I can. But it's really fatiguing to do anything (like get across the room, or eat, or breathe), so I may not report in as often as I'd like in the meantime.

That said, this is my 'week off', so I'm hoping that later in the week I might feel a little more myself.

A girl can hope, right?

Not My Favorite Chemo

2011-08-07T23:01:00.000-05:00

So, one dose in with the Gemzar, and already 5 hours down in the ER. Nasty side effects and a very high fever for two days - after MORE x-rays and a battery of tests, still not sure why. Sent home with a liter of saline in my veins and a prescription for broad-spectrum antibiotics in my pocket.

No, we are NOT having fun yet.

And we're not so sure that I'm going to be able to stick this chemo drug out. Theoretically (and according to the two oncologists I've spoken to on the subject), Gemzar is supposed to be 'relatively mild' as chemo chemicals go... but it hasn't worked out that way for me so far. And a dear friend had a nightmarish experience with it. So. I guess I'll try it for another week (along with the antibiotics, this should be fun), and see where it goes.

But I can't say I'm happy about it.

Conspiracy Theory

2011-08-05T13:06:00.000-05:00

A friend recently posted that the conspiracy theories swirling around the pharmaceutical industry and its relationship to the FDA and etc don't make sense because they and their families get cancer too, so of course they'd want to find cures...

But that argument doesn't hold up under scrutiny. I'll get back to the specifics of that particular argument in a bit, but first let's discuss the reasons that Big Pharma and the FDA might have for obstructing the testing and approval of promising new treatments for cancer.

Pharmaceutical companies have lots of political clout; observe, for instance, political campaign contributions to both sides of the aisle from pharmaceutical, insurance, and tobacco companies over the last 30 years, and think about what value they were/are expecting from the money spent. They have HUGE incentives to get in the way of research on anything but their own extremely profitable drugs (common chemo treatments cost up to $50,000 per month at one treatment per week, some cost more).

Notice who benefits from the system set up currently in terms of getting treatments approved - the requirements for publishing, patenting, the bureaucratic hoops to be jumped, the insane amount of money required for even the smallest 'acceptable' human trials (which will not be anywhere near sufficient to get your treatment approved).

Check out who is on the board of the FDA, who pays them money for their services, where their investments are held, what their own patents and patents pending are. Check out the FDA rules about how and when drugs are approved. Check out the trials going on for the last few years, see how many are on new treatments vs. various combinations of the same old stuff that doesn't really work. Notice who is funding the trials.

Think about what these things mean for the big pharmaceutical companies, in terms of keeping the profits going on the drugs they already have patented. Think of what their stockholders expect. Look at what is happening to Eli Lilly at the moment because of their patents running out, and think what would happen to other pharmaceutical companies if their extremely profitable chemo and 'mental health' drugs were rendered pointless by better treatment.

Unfortunately, the 'they get cancer too' argument doesn't hold up, unless you also think that somehow the families of tobacco bigwigs (as well as the farmers and pickers and factory workers) were either immune from cancer or that they all TRULY believed that cigarettes don't cause cancer (in spite of the mountain of evidence waved in their collective faces).

In the end, the officers at pharmaceutical and tobacco companies have to weigh their options - do they give up their livelihoods right now, or do they take a little gamble on a potential risk down the road?

Also remember: like those of the tobacco industry, families of the officers of big pharmaceutical companies can well afford to go to Europe for the latest treatments, and they do so.

You and I don't have that luxury.

I'm not saying we should spend our hours sitting around in a stew of fury - that wouldn't be healthy for us, and we have troubles enough. But it's not good to close our eyes and pretend that everything is okay when it's not, either. The system is flawed, and it's not working for people with the deadliest forms of cancer. The survival rate (including median survival times) for breast cancer is exactly the same as it was in the 1930's. Do we find that acceptable, when we actually think about it?

We changed the system for children's cancers, and it has led to some significant advances in survival and treatment. We should be doing the same for adult cancers. But that won't happen until we stand up, yell loudly and put our votes where our mouths are. That happened when our insurance companies tried to decimate our treatment options for catastrophic/chronic illnesses back in the 1980's; we can do it for cancer, if we have the will.

No News Is Bad News...

2011-08-02T18:54:00.000-05:00

So the news isn't good. The Circulating Tumor Cell only found one cell in the sample. One is about what you'd expect to find in a healthy person, if the test was going to be effective for your particular cancer. So no CTC test for me after this - and no help in finding a working treatment quickly enough to be truly useful.

I did qualify for the Phase 2 Drug Trial, because of the HUGE tumor in my pelvis/hip (and, painfully, the area where I sit on the left side, between the pelvis and the femur in the back). The tumor is so big that it interferes with both sides of the hip/pelvis AND fills up a large area of my inner pelvis. Probably a good thing that I have no uterus or ovaries to be crowded...

Unfortunately, they needed permission from my insurance to start me on the trial, because the insurance company might need to pay for scans. The trial pays for the chemo, but may defer the scanning costs to the insurance company, which is already paying for scans for the 'standard' chemo drugs. And my insurance is dragging its feet about getting back to us on that issue. In fact, they let us know that they have the right to think about it until the 9th of August - a week from now.

More unfortunately, the scans they took this past week show that there has been significant growth in the tumors in just the one extra week I took off of chemo in order to test for the drug trial. Dr. B didn't feel that I could afford to wait any longer.

So I'm on the chemo today that I SHOULD have been on last week (Gemzar). I gained tumor size, was heavily irradiated - and didn't gain a thing. Because I have now been on three chemo treatments, I no longer qualify for the trial. So that is that.

And I'd like to point out that now my insurance has to pay for the scans (average cost of $3,000-5,000 per scan, approximately 4 more scans per year than they'd normally spend anyway, assuming a miracle happened and the drug was effective for a year - an extra cost of at most $20,000 IF my insurance was paying full price for the scans, which they are not) AND the chemotherapy (approx. $29,000 per month of treatment). So thank you, Medica - you lost me an opportunity, cost me extra irradiation and cancer growth, and cost yourself a ton of extra money over the next couple months at least.

Smart. Very smart. The sort of practical Business Budgeting that Speaker of the House Boehner enjoined the unemployed and disabled to emulate in his address to the nation the other day, no doubt. So glad that our private insurances are protecting our health and our pocketbooks - after all, we have the best health care system in the world. Don't we? Don't we??

Update, Again

2011-07-28T23:53:00.000-05:00

Not a lot happening at the moment, although there's plenty of busy-ness. I'm getting tested to see if I qualify for a Phase 2 Drug Trial, which means blood tests and scans and lots of paperwork.

Phase 1 Trials generally test mostly for how toxic the drug is, with effectiveness being secondary. They are generally very small trials. Phase 2 Trials check for both toxicity and effectiveness, with a moderate number of study patients - in the case of the trial we are considering, this is about 160 metastatic breast cancer patients. When drugs/treatments fail, it is usually in the Phase 2 Trials, primarily because the treatment proves to be either ineffective or too toxic for large numbers of patients to tolerate. Phase 3 and 4 trials are usually longer, larger cohort studies, fine-tuning issues such as most effective dosage and dose frequency, toxicity management, long-term and rare side effects, etc.

With a new drug, early Phase 2 Trials are more or less a crap shoot. You don't really know all the side effects (the prior trials were probably too small to indicate the less common - and usually more severe - side effects, and of course there is no data on long term effects). You usually don't really know the effectiveness of the drug on your specific type of cancer.

There are benefits, but they often don't fall upon the patient (unless it turns out to be a spectacular success - Tamoxifen, for instance, was stopped in the middle of the Phase 3 trials because it was so effective that they wanted to make it available to all breast cancer patients with hormone-sensitive tumors). The study pays for testing and drugs - which could be useful to patients with no health care insurance, but in my case the benefit is to my insurance company, rather than to me. The pharmaceutical company benefits, because they get to test and hopefully eventually market a very profitable drug (chemo drugs bring in HUGE amounts of money to the industry). Doctors get to learn about new drugs, and find out whether they are effective before they are even generally available. But the patients...

Well, a miracle could happen, and the drug could be an amazingly effective treatment. We haven't found one yet, but you never know. But the odds aren't in your favor. The likelihood is that the drug will either be completely ineffective, or it will be minimally effective, or - at best - it will have about a 30% (the 'gold standard' chemos have about a 30% 'success' rate) chance of either shrinking, stabilizing, or slowing down your tumors for a little while. In most cases, a 'little while' is literally a matter of a few days to a few weeks. If it's a few weeks, they call out the media and stop the presses and declare it The Next Big Thing. And again, they are generally looking for 'progression free' weeks, rather than longer lifespan.

And in the meantime, the patient is the one taking all the really big risks. Because it's the patient who goes in with no idea of what horrible things the drug might do to them, and nobody can tell them. Which is why so many drugs don't get past Phase 2 - people die or have new cancers or heart attacks or blood clots, and maybe it's for a drug that helps some people, or maybe it's all for nothing.

But if nobody joins a Phase 2 Trial, then they will NEVER find the REAL cure. Somebody has to do them. The question is: in this case, should somebody be me?

I'm not sure yet. I'm thinking about it. In the meantime, I'm going in tomorrow to drink a lot of contrast dye and get injected with even more, so that I can be extremely thoroughly CT'd and bone scanned. The CT scan is because they don't care about my bone mets - they aren't 'properly measurable'. Though why they then want a bone scan, I can't imagine. What they are insisting on is that I have soft tissue tumors that are big enough to measure through a period of shrinkage (in the best of all possible worlds). Which may not be the case. So first we find out if I'm eligible.

Then I decide. The devil we sort of know (Gemzar), or the devil we don't?

Well, That Sucks...

2011-07-25T15:43:00.000-05:00

Unfortunately, my cancer seems to be more clever than I am. At least, it seems to be very quick to work around whatever we throw at it.

Bad news from the scan: the tumors are roaring ahead again, full speed ahead.

On to another chemo drug. Unknown side effects (at least for me), unknown efficacy.

Really, people, this ride stopped being fun a long, long time ago. Where's the emergency switch? I want to get off...**

**No, I don't mean life. I mean cancer. I still have plenty of books to read, yarn to spin and people to love...

Weekend Jitters

2011-07-23T00:47:00.000-05:00

Scan this morning, so as usual I'm flittering between fingernail-chewing (figuratively speaking) and trying desperately to distract myself. My misery will be relatively short-lived, as I'll be seeing Dr. Bouncy and getting a look at the scan results, if not the report, early on Monday morning. Then we'll decide what the next treatment plan is.

I've been having some indications that all is not well, so I'm not feeling hopeful. Starting a new treatment is rife with potential problems and risks, especially when you don't know if it will even do you any good.

The good news is that it looks like I'm going to be able to get the CTC test done, and done within a week or so of the scan, which means we'll have some idea of a 'baseline' to work with IF the test is able to detect tumor cells in my blood.

What is a CTC test? Well, it's a special blood test that is recently available for certain cancers - breast cancer is one of them - that detects and counts the number of tumor cells circulating in your blood. It requires specialized tubes for collection, and has to be sent to qualified labs and processed very quickly (within 48 hours).

IF there are detectable tumor cells in your sample, the number per volume can fairly accurately predict your prognosis - at least, it can tell you whether a particular treatment is working or not, based on the tumor cell count on your last test.

The benefits:

Unlike scans, the CTC test does not irradiate you and make your cancer more likely to grow.

You can take the CTC test a month after starting a new treatment, and get some idea of whether that treatment is working. Scans are usually limited to every 3-6 months, which can be a very long time to let a cancer grow if a treatment is not working.

CTC tests cost at 1/5th or less the cost of scans.

CTC tests don't take up as much time for the patient as a scan, and don't cause the claustrophobia or discomfort that laying still in that confining tube can bring.

Unlike scans, CTC tests are as accurate and easy for diabetics as they are for non-diabetics.

CTC tests do not require the annoying dietary restrictions for 28 hours beforehand that scans demand.

Preliminary testing seems to indicate that when circulating tumor cells are detectable, the CTC test is more accurate in predicting likely survival time (on current treatment, at least) than scans. I'm not completely sure about this, but I believe this is because the number of cells per volume indicates speed of metastatic spread. And that, of course, tends to be a fairly big predictor of survival.

The disadvantages:

CTC tests do not always detect circulating tumor cells in the samples of particular people, even if they have advanced/metastatic cancer. The circulating tumor cells that are sending metastases into distant areas of their bodies might be traveling via the spinal fluid, for instance, or the bone marrow.

CTC tests do not tell you where the tumors are, how large they are, whether they are growing, how aggressively they are growing, or if they are doing serious damage. At best, they simply tell you if your tumors are more active, or less active, in sending out metastasizing cells.

The reason I am anxious to take this test is that the other blood tests that are indicative for breast cancer have not been effective for me - no matter how advanced my cancer gets, the results for the standard tests stay the same. So I've been dependent on scans to tell me about whether or not a treatment is successful, and in at least one case that meant that my cancer was allowed to grow unchecked for several months, leading to a gain of nearly 20 extra tumors. One more progression like that (or frankly, considerably less than that) will be the end of me.

So knowing quickly whether a treatment is working could literally be a matter of life and death for me.

Wish me luck. I need it.

Long Time No Write

2011-07-22T06:07:00.001-05:00

As blogging friend Nancy points out, I guess I haven't written in a little bit. This is because things have been happening too fast. Not all bad, not all good, but lots of stuff that keeps me busy and off the computer.

For one thing, a very old friend came across the country to visit, and that took up several days. We drove down the River Road, we went to the Science Museum to see the King Tut exhibit, we caught up on a year's worth of news and many decades of reminiscences. And we ate and we ate and we ate. Some restaurants were disappointing - my friend is a Foodie, and was hugely looking forward to eating to the nationally renowned Piccolo, whose food turned out to be largely bland and uninteresting.

On the other hand, we had the

Best.

Meal.

Ever.

We went to La Belle Vie in Minneapolis and indulged in the 8-course Chef's Tasting Menu (plus the Amuse Bouche beforehand and the Petit Fours afterwards), and the guys added to that the matching wine flights (I tasted each wine but did not indulge). Each plate was a treasure unto itself, the company was more than convivial, and a great time was had by all.

On either side of the visit was your usual family activities, and then an unfortunate necessity - we had to put our poor old kitty down. Her body had been breaking down for quite a while, but the degeneration had accelerated over the last couple months, and was achieving critical mass by last week. She was a charming, beautiful, quirky, curmudgeonly personality who added much to our enjoyment of the past 16 years. She will be greatly missed.

She is also a very good argument for adopting adult animals from your local animal shelter. If you don't have a need for a pet, please go to your local animal shelter and make a donation. Even small amounts will keep a number of animals alive long enough to find loving homes.

More Pink Business

2011-07-15T09:18:00.003-05:00

As long-time blogger friend and newly diagnosed BC Sister Nancy points out, my KomenWatch link was no longer working. So I fixed it, I hope... and added a couple more links in my BC Info section. Thanks for reminding me, Nancy. I'll try to add some more useful sites to that list for you in the next few days.

It's worth visiting the KomenWatch site; they've posted a few new articles recently, the latest on Komen's marketing of two new products and how that sort of marketing impacts the theoretical bottom line of a supposedly non-profit agency. Link from that article or this to Geoff Livingston's comments on 'Cause Competitiveness' and how it affects the bottom line of non-profits - assuming that the bottom line of a cause-related organization is to find a solution to a particular problem, and thus to eventually put itself out of business. He raises points well worth pondering.

I Love My Friends

2011-07-13T23:44:00.003-05:00

Some of my wonderful women friends are getting bad news this week. They are looking at some of the same hard choices that I have either had to make in the past, or that I am making now.

Some of them are making these choices for the first time; I remember how scary that was when I was looking into that great unknown. I also remember how angry I was as I found out more about the choices I wasn't being offered (or allowed to make).

Some of them are making these choices again, the latest exercise in a long line of choosing between one evil and another. The quality of the scared and angry is a bit different with wear and tear, but it's still there. The choices aren't easier - although we know a bit more, through research and experience, we're still facing some great unknowns.

It sucks, no matter how you look at it.

Unfortunately, although I can offer information, and more importantly my sympathy and support, I cannot offer answers or fixes. As far as I can find, there aren't any of those out there.

But I can offer love. I'm thinking of you every day, my sisters; I cannot hold you in my arms, but I hold you in my heart - as I know you hold me in yours. In that connection, at least, we are strong.

What Could Be A Significant Breakthrough

2011-07-09T18:16:00.001-05:00

Dana Farber has a new cancer treatment in the works, and it looks like it could be a doozy. I doubt the studies will come soon enough to help me, but there is hope that the treatment could be around for my younger family members and their friends, if the time comes that they might need it.

This treatment involves what are called PARP inhibitors, which previously seemed to be effective only for a rather limited number of people with breast and ovarian cancer - those who lacked functioning BRCA1 and BRCA2 proteins. These BRCA proteins help to repair DNA damage to cells, but seem to be particularly effective in repairing DNA damage to cancer cells, which means that the cancer cells are able to quickly find ways to protect themselves from damage, and to continue growing. Which is why treatments tend to stop working after a period of time.

PARP inhibitors prevent less serious DNA damage to cancer cells, which in combination with lack of functioning BRCA proteins, leaves those cells more susceptible to being killed off by treatments such as radiation and chemo.

Another protein, CDK1, regulates cell growth and is overactive in many types of cancers. Dana Farber's recent studies indicate that CDK1 is a necessary activator for BRCA1, and that a CDK1 inhibitor can be used to disable what would otherwise be working BRCA1 proteins, making the PARP inhibitor functional for a larger number of cancers.

Not only does it look as though this combo of PARP and CDK1 inhibitors might be very effective for at least some people, but it also seems to be non-toxic, as it only affects cancer cells, and largely leaves normal cells alone. Welcome news for those of us on toxic treatments; we hardly need to add more poison to what we are already taking on.

This seems like a very exciting development to me. If you are interested in getting a more in-depth (and probably more clear) understanding of this potential treatment, you can find a good article about it - and links to even more pertinent information - here.

On Hold...

2011-07-03T00:12:00.000-05:00

We're having some fairly complicated personal stuff going on at the moment, so I'm taking a bit of time off from all but the most essential survival-oriented functions - which means it might be a few days, or even a week or two, before I post here. Don't give up on me, please. I'll get back to you eventually. In the meantime, please visit some of the lovely blogs and bloggers you will find on the right side of this page. They have plenty to say, and you may find that you make a new friend or two in the process!

Brief

2011-06-26T11:55:00.000-05:00

I wrote the second installment of my vacation report here.

We had a lovely time, which is good, because this week was the opposite in just about every way possible... although it mostly has nothing to do with my cancer, so I'll just leave this past week to itself. Hopefully next week will be a little less traumatic.

In the meantime, go finish my vacation with me. I'll be here when you get back.

A Quick Note...

2011-06-17T16:01:00.000-05:00

In case you were wondering where I had gotten to - I was in South Dakota and Wyoming, having a lovely time with My Boys. If you are interested, I've posted the first installment of my report at my other blog, here. I'll get around to the rest of it soon, I promise!

Now and Again

2011-06-05T01:44:00.000-05:00

I've had a bit of a rough week. I had a sudden ramp-up of hip pain this past weekend, ending with a trip to the ER for high fever (102.8 F, which is considerably higher than they like to see temps on a chemo patient, since we don't have proper immune function to help us recover from infection).

They couldn't find the reason for the fever, but pumped me full of saline and NSAIDs and sent me home - after all, I had a chemo appointment the next morning.

The pain in my hip has been joined by fairly severe leg pain, so I haven't been sleeping well all week. And the Abraxane is raising my blood sugar to unprecedented levels, which leaves me feeling rather dizzy and unwell.

But all is not lost. Or at least, hopefully there is some hope that things aren't dire. From the patterns I saw last weekend (fever lower after 1/2 liter saline, lowered to normal temps after next day's additional 1 liter saline w/chemo), my feeling is that the fever was actually caused by dehydration and perhaps bad electrolyte levels... because now I'm building up a fever again. I don't know WHY I'm suddenly prone to dehydration - well, it's been hotter, so I've been sweating a bit more than has been the case previously. But only a bit. You wouldn't think it was enough to cause major problems, but who knows what chemo does to the individual system? Nothing is working the way it should.

But at least it's helpful to know what's going on, at least in part, and that something can be done about it.

So. If the fever is still there in the morning (I've been forcing fluids all afternoon and evening), I'll go in to the ER again in the morning and get a nice refreshing saline drip, in hopes that it will give me enough fluids to keep me reasonably functional for a week or so. And maybe have them check out the leg while we're at it.

Wish me luck. I'm heading out on a trip soon... I'm hoping to enjoy it from somewhere other than an ER bed!

How Big Pharma and the Government Work... For You?

2011-05-31T23:33:00.001-05:00

This isn't about cancer - yet it is. Or MS - yet it is. Or Parkinson's Disease - yet it is.

This is partly about Lyme disease - which is a rapidly spreading epidemic that we aren't hearing nearly enough about. It's a bigger risk to you and your family's health than West Nile and AIDS combined. If caught early, most people can avoid serious effects - but some will have serious, even deadly consequences, and need more serious treatment.

My mother-in-law, and many of her neighbors, got Lyme Disease, and got the more serious neurological and immune system versions. They had flu symptoms, cognitive function issues, became wheelchair-bound, clinical depression, debilitating nerve pain, movement disorders, immune system disorders. My mother in law was eventually able to get the long-term heavy-duty antibiotic treatment that treated the problem. A treatment that now, because of the actions of a few individuals, you and your friends and family will not find available.

And so the documentary is about Lyme Disease, but it is also about how the government and insurance companies and Big Pharma work together to keep you sick, and even dying... for profit. Not because they are evil, but because it's easier (especially on their pocketbooks) than thinking about the long-term consequences of their actions.

Many of the people who see this documentary will be shocked. Which they SHOULD be.

We should be shocked enough to take action.

Watch the movie "Under Our Skin". You can see it on Netflix Instant Watch, you can rent the dvd from Netflix, you can buy the dvd, or you can watch it on your local public television station if it is coming soon - here's a good link to info on the documentary and the calendar of showings on PBS stations in your state.

You probably won't be happy to know what you will know after watching this show - but if it helps a few of us avoid the more serious disease, and if it helps a few of us who do have the serious disease get better, it's worthwhile. And if it starts making people aware of the way in which insurance companies and the FDA control research and healthcare in this country, and if they take action, perhaps we can find better treatment for other serious diseases in this country.

Breast cancer, for instance.

Leave Me Alone, Part II

2011-05-23T07:39:00.000-05:00

I think I've figured out at least part of the hospice people's claim about people losing interest in the world as they get closer to death.

I don't know that it's losing interest, so much as it's losing the ability to express interest.

My experience of this chemo thing is that as the side effects get ickier, and as fatigue drains my focus and my internal resources, my interest in the world - and in people - becomes more receptive and less expressive, if that makes sense.

There are a lot of things that I would very much like to do, and many people that I very much want to interact with... but getting up the energy and focus to actually do even very simple things takes so much effort and seems to eat up so much time that I simply don't have the ability to talk/write to the people I'd like to interact with, or do the things I'd like to do.

By the time I get up (before 7am), stop the nosebleed, eat a meal, either go to a doctor appointment or skim through my emails, maybe have a snack, stop another nosebleed, take a nap, eat dinner, spend a few minutes with my husband and/or kid... I might have a little time to either write a couple short emails OR watch a bit of television OR write a post to one of my blogs OR talk to one person on the phone somewhere in there. Maybe. And that will pretty much wipe me out, and I'll go to bed at around midnight. Or later.

Seriously, that's more than half my days, right there. You would think there was plenty of time to do lots of other stuff in there, but somehow for me there isn't. Things just seem to take forever to do.

I suspect I must do a lot of staring into space or something, while I martial the energy to breathe. But I'm not consciously aware of that part.

When someone is there in front of me, I love to be with them. And I think about all of you - I definitely have not lost interest. I love to hear from you, I enjoy our talks, I am curious about what you are doing. I've just lost the ability to chase after you: to write the post, to write the email, to call you up, to send the card.

I know it's pretty easy to interpret that as a loss of interest. But that's not it. It's more a loss of my place in the Space/Time Continuum. Somehow my days are only 3 hours long or so, even though the demands on my time are the same as they were when I had a full 24 hours.

So feel free to write, or call, or even make a lunch date. I'm listening. It's just hard for me to catch you when you are all running past so very quickly...

Week 3 of Round 2...

2011-05-22T11:13:00.001-05:00

The third week of abraxane, second round, is kicking my butt a bit, and what with funeral and doctor appointments and feeling off-kilter, I've been taking a bit of a break from the blogosphere. Mostly this consists of napping. Or thinking about napping. Or trying to nap, but feeling a bit too yucky to manage to get to sleep. I might even dream about napping, I'm not sure... I'm asleep at the time.

Next week is Chemo Vacation Week, so I'm hoping to recover a bit. If I do, I'll do a real post.

Not that a 'real' post will be a big thrill to anyone, but I'm looking forward to having enough energy and brain power to manage it.**

In the meantime, if you want to read about something more substantive, go over to Donna's blog and read a bit about the Avastin issue. I think there are good arguments on both sides of the debate, so linking from her blog and doing more research is a good idea.

**If my idea of a 'real' post turns out to be inane babbling, please don't let me know. The whole 'chemo brain' thing is freaking me out enough, as it is. Leave me my delusions of coherence, and collect karma points for cyber-neighborliness.

A Brief Update...

2011-05-16T00:41:00.001-05:00

I'm fine, more or less - just having a very busy week or two.

I did manage to get to a local sheep & wool festival and even sold a wheel, along with several items from my friend's adjoining table. I was SO glad to have been able to attend, since that was seriously in question during the weeks previous, when I was very crippled up with pain in my hip. I not only got to spend the weekend with my lovable husband and my good friend Denise, but I also met several delightful past acquaintances and some lovely new-people-who-are-now-delightful-acquaintances.

I followed that up with the second week's infusion of this 3-week round of chemo. Plus I actually managed to get to both my acupuncture appointment and my healing-touch appointment, both very helpful.

On Sunday I got to go to my exceedingly bright and beautiful niece's high school production of 'Phantom of the Opera' - and yes, they did manage to do an excellent job of it, in spite of the Andrew Lloyd Webber score being extremely challenging for such young artists. Afterwards we had delicious cake and excellent conversation at the home of my cousins and said niece, and then took my son and his girlfriend out to dinner (thus managing to have dessert first and last, as well as having our cake and eating it, too).

A good time was had by all.

On a sadder note, another bright light and spirit has passed from this world. Dee Spresser - a wonderful lady and longtime friend of my mother's - died this weekend. Hers was a different cancer than mine, but it was just as deadly, and cruelly took our friend before her time. We will miss her kind heart, her dry wit, and her sharp bridge play.

More Info On Research and Metastatic Breast Cancer

2011-05-06T00:21:00.001-05:00

A little while ago, I wrote about the woeful state of current research on metastatic breast cancer.

Well, now the fabulous Donna Peach has written a post that you might find of interest on the subject - she links to an excellent presentation by Musa Mayer on the urgent need for research in this area. Go there and check it out!

More Good News... Sort Of

2011-05-04T16:24:00.000-05:00

The results of the x-ray are in and... um, not much, actually.

No breaks, no new fractures, no impending fractures evident. Could be a little bone spur irritating a nerve bundle, could be a cartilage issue, could be the tumor regressing is causing a bone 'toothache', could be a slight dislocation, could be a pinched nerve, could be just feeling the tumor after a period where the tumor wasn't bothering me.

In other words, who knows? And who knows if it will get better or not? Not us, and not the doctor.

The good news: no need for a rod for the moment. Yay!

The bad news: no particular way to help myself get less pain and more mobility. Just wait to see what happens, grit my teeth and bear it.

Ah, well, just one more of the joys of being Little Rose Cancer Hood!

The Lowdown

2011-05-03T23:23:00.000-05:00

So: bad news, bad news, related bad news, good news, good news.

1. Dr. Bouncy thinks the hip pain is probably from breaks in the hip and/or femur, and that I may need a rod put in. Goody, more difficult decisions and painful procedures that will rob me of my limited functional time. That's assuming the rod wouldn't just shatter the bone more and make things even more difficult, perhaps even end my life early. That is a BIG assumption.

2. Dr. Bouncy strongly believes that we should continue the more aggressive schedule of three weeks on and one week off for at least one more round. I am not happy about this, as I am still suffering from side effects despite my week off, and side effects are cumulative.

2a. Also my eyebrows and eyelashes have made a sudden dash for freedom. Turns out eyelashes are very useful and protective things, as well as being decorative. My eyes are very angry with me. I'm not too happy with them, either, so the feeling is mutual.

3. I feel a little bit better, in terms of the hip pain, than I felt yesterday. I felt a little bit better yesterday than I felt the days before. I am hoping that this is a trend, and that we can put off the whole rod idea for a while. Ugh. We await the x-ray results and the consultation with the Orthopod**.

4. The scan results are in, and although all the tumors are still there (my own not-so-little flock...), they are noticeably smaller and less active. Thus #2 on this particular Hit Parade. Dr. Bouncy wants to smack them hard while they are still vulnerable. Not in hopes of a cure, of course, but in hopes of getting them inactive enough that we can hold them off for a little while with something a bit less dire and Quality-of-Life-Destroying later on. It's been a long time since these puppies have come anywhere within screaming distance of going in the 'right' direction, so this is at least moderately encouraging news. The first moderately encouraging news we've had in a long, long time.

Given item #1, I feel like I've been slapped and then kissed - I'm not entirely certain how I feel about the whole thing.

**People who write to correct this lose 500 Humor Points and have to find all my kidnapped socks and match them to their grieving orphaned twins. Seriously, every time the laundry is done, I lose at least 8 socks. I'm going to be barefoot soon, and nobody wants to have to look at my naked feet, believe me!

Oh, Leave Me Alone...

2011-05-02T20:43:00.001-05:00

A lovely social worker from a local home hospice organization came to talk to my folks and I today. We have another appointment with her and a nurse on Wednesday. I'll probably talk about these things in more depth later. But for now...

One of the many things I learned today was that generally as people get closer to dying, they tend to back away from the rest of the world, turning inwards to process their... well, their process. They often do this for two or three months before their actual death. They just sort of sense that things are going to change soon, and they go into preparation mode.

I believe that people can sense death drawing near. I've experienced it. My grandmother, who had always been resistant to making plans or having discussions about her own passing, suddenly chased me down her walkway when I was leaving and dragged me back into the house, insisting that I choose the thing I wanted to inherit when she died. I protested, since I was in a hurry and wasn't prepared at that time to think about such a thing. I said that I would think about it and let her know next time I visited. She continued to insist, and finally I chose something, gave her another hug, and ran to the car. I couldn't understand why it was suddenly so urgent an issue - she was healthy for a woman her age, there was no reason to think she wouldn't survive many more years.

That conversation was the last I had with her. She died of injuries from a car accident only a few weeks later.**

I realize that for the last bit, when I'm really heavily drugged up to relieve pain (or at least my expression of pain - boy, am I paranoid about drugs, or what?) I am pretty likely to mostly sleep or withdraw. I mean, I tend to withdraw when I'm in pain, so that's not a big surprise.

But the question is this: I spent much of my childhood, and my adulthood as well, backing away from the rest of the world. In some pretty significant ways, I've been more socially connected since my diagnosis - and my journey towards death - than I've probably been in my entire life. Heck, I've probably been more ME than I've been in my entire life, in many ways.

If you had asked me five or more years ago what I'd want at the end, I probably would have said, "I want to sit quietly somewhere and just be left alone to read and think and prepare myself."

Now? As I feel now, I want to be surrounded by my family and friends. I want my cousins to visit, I want my aunts and uncles to visit, I want my sibs-in-law and their families, I want my mother-in-law to visit.

They are wonderful, and I love them. I want to feel that love around me. Even if I'm not conscious, I want people to read to me and talk to me, I want to hear music and listen to my favorite podcasts.

I remember when my father-in-law was dying, the family all gathered around him and sat vigil. It was so wonderful, being able to share stories about him, all his dear and silly and funny and inspiring and frustrating history. It brought his spirit into the room with us, even though he was not awake to participate actively in the discussion. We laughed, we cried, we laughed again. We were able to share with him our love, we were able to forgive, we were able to say goodbye; and it was good, it was healing, it helped us share and bond with each other, it helped us start down the road to healing from our grief.

I want that. I want it for me, and I want it for my family and friends. I want it to comfort and surround my parents and my husband and my son in those last difficult days.

Will I still feel that way in the coming months? Well, I can't know for sure. But it's something to discuss with my family. And to keep thinking about.

Although perhaps I feel this way because I've done so much thinking and being on my own already. Perhaps at the end we take care of the parts of our lives that we've neglected.

It will be interesting to find out where I end up.

And then the really big adventure begins...

**Please don't think me neglectful of my beloved grandma; she lived a 4-hour drive away, and I had a young infant with special needs at that time. Rather, it was a sign of my affection for her that I was willing to voluntarily trek alone with said infant in order to see her. I adored my grandmother - everyone who knew her felt similarly. She was an amazing, extremely lovable person. I still miss her. If someone waits to meet us on the other side, hers is the face I want to see, and the arms I want to feel around me.

Counting Chickens Before They Are Hatched. And Beans. Especially Beans.

2011-04-30T16:36:00.001-05:00

So the last few days have been a bit rough.

I wasn't feeling great on Easter Sunday, but I was still fairly steady on the pins, given the assistance of the Ugly Cane of Doom.**

On Monday I actually felt a little better. I decided to spend the day working on some craft projects, in preparation for Shepherd's Harvest Sheep & Wool Festival - the plan being that I was going to have a space there and share it with friend Denise. Awesome, got lots done - and then in the late afternoon I stood up and just about fainted.

The left hip was - and is - in agony, folks. And will only just barely support me in a few painful hobbling steps. Getting up and down the steps from our house to the sidewalk (in order to get to the car so that I can see my doctors, get my scans and chemo, etc) has been getting increasingly challenging and exceedingly painful. At this pace, I may very well be wheelchair bound in a matter of a day or two.

And I'm in pretty nasty pain all the time. It hurts when I sit, it hurts more when I stand, it hurts even more when I try to get into bed, and it hurts when I lay down. Yesterday it was so bad getting into bed that I'm pretty sure my son and husband were watching to see if I was going to expire right there and then - I was shaking from the pain and weakness, and probably pale as a ghost. Poor Bren announced to all of Facebook (or at least his corner of it) that I was on my way out.

Today my feet and ankles are swollen up like balloons. Don't know what that means, but I suspect it ain't good.

That said, there are a number of explanations for everything that might have nothing to do with me being in imminent danger of shuffling off this mortal coil in the near future.

It is an unfortunate fact that tumors that shrink are just as dangerous to your bones as tumors that grow. IF the chemo is working and shrinking the tumors, they are leaving airy cavities with very thin and fractured bone as structural support. Lots of people with tumors in the bone have their bones fracture after successful chemo treatment (especially in the spine, since the vertebrae are small and already rather airy by nature. The tumors in question here are in my hip/pelvis and femur, but although these bones are normally more structurally sound than the vertebrae, my tumors are quite large and numerous there, and they've already been fracturing for at least a year, so they are probably quite fragile, and I am no featherweight).

So this development could be caused by good response to the chemo, rather than no response to the chemo. No way to know at this point.

I tend to be pessimistic, because it's largely been my experience that things don't work out for me medically, especially in dealing with pharmaceuticals - maximum side effects, minimal benefit. And evidently recent studies are suggesting that Estrogen positive patients, and especially Estrogen positive/HER2 negative patients (among whom I belong) often get little to no benefit from Abraxane.

But I could very well be wrong.

The swollen appendages (hands, too) and the weakness could be due to spreading cancer, or it could be a side effect from the Abraxane - both swelling and weakness are a relatively common side effect for this particular chemo drug.

So. Where does that leave us?

Well, my cancer could be galloping ahead - or it could be gradually receding. We don't know yet. I had a scan done on Friday, and I'll be seeing Dr. Bouncy to discuss the results and to plan our next step on Tuesday morning. I will report at that point.

Things do not look good mobility-wise, either way. I am going to have to make some fairly quick decisions, some major concessions and sacrifices to the cancer, and lots of organizing, in a very short period of time (perhaps a matter of days). I may have to move to my parents' house so that I can have people around to fetch and carry for me during the entire day, instead of just the 2.5 hours between 7:30 and 10pm, when the dear husband is home from work. I may have to go to a hospice or nursing home or hospital for care if the hip entirely gives way - at that point I am likely to be bed-bound and in a good deal of pain. Or things may stabilize for a while. Hard to know at this point. Hard to make plans.

By the way - my insurance is happy to pay thousands and thousands per week for chemo treatment that has no proven ability to extend life for even one day, but is unwilling to pay for nursing home care (hospice coverage is limited, and they won't allow you to treat the cancer actively while there - hospices are for 'palliative care' only), either of which is considerably cheaper per week than many of the chemo treatments, certainly cheaper than the chemo treatments I've been on so far.

I'm just saying.

**I'm convinced I would have been a great swords...person. I can pick up my shoes with my cane and put them on, I can pick up my purse with my cane, I can write in the sand with my cane, I can (gently) push The Cat's butt along with my cane, I can push fallen objects back to the owner with my cane, I can stab or threaten or whack people with my cane. I could also walk with my cane for a while, which it turns out was pretty cool, compared to NOT being able to walk with my cane. The cancer, it sucketh every day.

Speaking of Medication...

2011-04-27T03:54:00.002-05:00

My current chemo regimen involves sitting in the infusion room for 4-5 hours, which is a fair chunk of time. Most of this time is taken up in simply waiting for my medication to be prepared.

The reason it takes so long is because they will not start preparing the medication until I'm actually sitting in the infusion room. And the reason they will not start preparing my medication when I get to the waiting room, or when I get my blood drawn for labs, or when I see my oncologist (I try to do these things on the same day I do my chemo infusions, so that I only waste one day per week in sitting around the oncology clinic) is because each chemo round costs thousands of dollars.

So if my labs came back saying that my blood count was too low to get my chemo, for instance, we wouldn't have wasted several thousand dollars worth of medication.

The reason I mention this is because for many under- or un-insured patients, this medication is out of reach. As are many of the chemo drugs and other potentially lifesaving treatments that their doctors might otherwise prescribe.

What can these people do?

Well, the wonderful people at Good Days have a Chronic Disease Fund which can help make up the difference between what private insurance and/or Medicare pays for and what the doctor orders. And they pay the doctors and pharmacies directly, so that most patients don't have to deal with continuous piles of paperwork.

They don't just cover breast cancer, either. They cover an entire list of devastating illnesses that not only affect people's physical lives, but also their financial lives.

It's a good place to donate money if you want it to go to help patients directly. You could quite literally help to save someone's life. That's a pretty good deal.

And it's a good place to go if you are a patient who needs help.

Instead of Bracelets...

2011-04-23T20:45:00.001-05:00

October is months away, and that is starting to look like a long time from now. So I am going to address this issue now. Don't worry - if I can, I'll be bugging you in October, too!

***********************

Metastatic disease is the cause of over 90% of all breast cancer deaths, but accounts for less than 3% of the current studies on breast cancer treatment. More than 30% of stage I-III breast cancer patients progress to metastatic disease (the stages of cancer refer to how far the cancer has spread, with stage I meaning that the cancer is in one spot, stage IV meaning that the cancer has spread to a location away from the original tumor and surrounding lymph tissue). Many more are initially diagnosed at stage IV. Over 40,000 people die of breast cancer every year.

Organizations such as Susan G. Komen rave on a lot about breast cancer awareness and survivorship, but awareness that metastatic breast cancer is still incurable and deadly is still dismally low. At best, we are the invisible - when we are seen at all, we are seen as the monster under the bed. At a recent meeting of metastatic patients, one gal admitted that when she went to the BC support meetings at stage 1, she had deliberately avoided the metastatic gals, feeling that somehow their disease might be caused by some contagious weakness. Most metastatic patients find this behavior to be the rule, rather than the exception.

We also find that even among our families and friends, myths and misunderstandings about our disease prevail. We find ourselves explaining again and again that we are never going to be able to stop treatment, get off the chemo, be cured.

Until a cure is found. And that event is nowhere in sight.

If we are going to find a cure for breast cancer, and an effective treatment for metastatic disease, we cannot depend on the Pink organizations, or on the standard research organizations (Big Pharma, etc). We are going to have to resort to private funding of organizations that finance innovative research.

One such organization is Metavivor, which promotes understanding of metastatic disease and funds research specifically aimed at curing metastatic breast cancer. If we are going to keep your grandmother, mom, daughter or niece from dying of this disease, organizations like Metavivor are our best bet.

Skip the sassy bracelets, the pretty pink ribbons, and the clever t-shirts. Instead, let's face the monster head-on by putting our donation dollars into research, rather than marketing. Let's get ourselves to the point where awareness will truly save lives...

Almost 20 Days and Evidently Counting...

2011-04-23T11:25:00.001-05:00

I've been reminded that I am being remiss on the whole Posting To The Blog issue. It's been 19 days since the last post.

Sorry about that!

Part of the problem is that I don't have a lot to report. But for what it's worth, here it is:

This is Week 3 of the Abraxane. Some stuff is worse than the Adriamycin/Cytoxan combo - spectacular bloody noses, joint and bone pain, neuropathy ('pins & needles' in hands, feet, and back) that sort of thing. But some stuff is better - less fever, less nausea, less deep hopeless depression.

All things being equal, I prefer the Abraxane to the A/C. That depression really was not a Good Thing.

It will be several more weeks before I can find out whether it's actually doing anything to slow down the tumors. Cross your fingers for me, please, I can use all the luck I can get.

Now I have an entire week sans poisoning to look forward to, which is nice. This is called a 'chemo vacation'. Which sounds like it should be something really exciting, doesn't it?

"I get to go on a Chemo Vacation, I'm going to really Get Down And Par-tay!! Somebody pass me the IV bag and a pen, I'm going to Shotgun it!!!"

Scan Results

2011-04-04T19:44:00.002-05:00

I got the scan results back. Not what we wanted to hear, I'm afraid - the mets in the spine and hips got bigger, more fracturing, the soft tissue mets are still there. Some of the tumors are slightly less aggressive looking, but most are still voracious. About the only good thing we can say is that there aren't any significant new tumors. Except for the one in the thyroid (oh, yay!)

Well, I suppose one slightly good thing (maybe?) is that some of the bone mets have become more sclerotic. Which I think means that those tumors are growing more slowly, or to be more exact, the bone there is being eaten away less easily and is trying to grow bone around the tumors as a defensive response. That said, the tumors in the spine and hips have gotten larger. So although they may have been slowed down a bit, they haven't been stopped, much less shrunk down.

We've temporarily slowed things down from a gallop to a trot, that's about it. Not a lot of benefit for what is basically the loss of 4 out of 7 weeks - to me, laying around the house too depressed and sick to even enjoy reading or watching TV is pretty much a net loss, as it's not what I'd call 'living'. I don't think I gained an extra 4 weeks of quality life 'on the other end' in exchange, so I'm not happy with the results.

It doesn't help that the whole 'maximum side effects, minimal benefit' thing is entirely typical for me. Just because this isn't a surprise doesn't mean it isn't a disappointment. A very, very scary disappointment, one that does not make me feel very hopeful for the near future, much less the long term.

It's very discouraging, I must say.

Tomorrow we talk to Dr. Bouncy about what poison I will take next. Should be fun.**

** Compared to being Drawn & Quartered, for instance. Everything's relative.

Home Again, Home Again...

2011-03-12T11:18:00.000-06:00

I was lucky enough to have a bit of a break from the bone pain that coincided perfectly with the Metastatic Breast Cancer Retreat, which allowed me to have a wonderful time with all the truly lovely women I met there. I cannot thank the folks at the Breast Cancer Recovery Foundation and the staff at Sundara enough for their kindness and the care that they lavished on every detail of the retreat.

Once again, I cannot recommend BCRF's retreats highly enough, for those of you who are unlucky enough to be struggling with this nasty disease. They are a true blessing and a joy forever. If you love someone who has been struggling with their breast cancer diagnosis and/or treatment, please recommend the retreats to them.

And please send BCRF a nice donation, if you can - they depend on the kindness of donors in order to keep the cost to the retreat-goers FAR below the actual cost of the event. The BCRF folks are truly inspired by love, and are dedicated to their cause to an almost ridiculous degree; they deserve support on a grand scale that reflects the size of their hearts.

In the meantime, I have (regretfully) plunked back down from that bit of paradise and am back to reality. In my case, reality means that the bone pain is back with a vengeance (darn!), I need to get my taxes done (yuck!), and I have my third chemo treatment on Monday. Probably by myself, since the poor folks have been struck down with the Grue of Doom (which largely involves a long stretch of very nasty and seemingly intractable bronchitis, among other things).

Yeah, reality bites. I think I'll go comfort myself. I saved some chocolate from the retreat - reality may bite, but I can still bite back!!

Retreat

2011-03-06T23:56:00.000-06:00

Hopefully tomorrow I will be having my first Xgeva treatment, an acupuncture treatment, and then will be taking off for the Wisconsin Dells for most of the week.

Why the Wisconsin Dells? Because that is where Breast Cancer Recovery has their retreat for women with metastatic breast cancer. They hold these retreats at least twice a year, at the beautiful Sundara Inn & Spa, where they hold activities and talks specifically designed for the needs of stage 4 gals - and also spoil us shamelessly.

This spring we have women coming from all over the country - the retreat is so wonderful that it's worth a long bit of travel to get there. The gals who run the retreat are fabulous, the accommodations are posh, the food is wonderful, and the spa folks are exceedingly kind and attentive. If any of my dear readers qualify for this retreat and have not yet attended, I highly recommend that you sign up for the autumn retreat immediately. I guarantee that you will come home refreshed, renewed, and relaxed.

Breast Cancer Recovery also holds recovery retreats for breast cancer survivors, retreats for women who are navigating their breast cancer journey without the support of a partner or significant other, and retreats specifically geared for younger gals (40 & under) who are dealing with this disease. Descriptions of the various retreats and the opportunity to sign up can be found on the BCR website (see link above).

As you know, I could really use a bit of renewal right now. I am very, very grateful to the BCR and Sundara folks who have given me this opportunity. I only wish that you could be there with me!!

Time Out for Husband

2011-03-05T00:06:00.000-06:00

Although I've been having a less than stellar time of things, I can't be all about me, all the time.

So this week has mostly been about my husband.

A little while ago, he sat down with our GP and had a stern talking-to about his uncontrolled diabetes. More recently, she sat him down again and went over the improvements he's made (Yay, Scott!!) and the steps he needed to take in order to improve his health over the long haul.

In the process, they went over his family history, and what that and his diabetes meant in terms of risk factors. She recommended that he have a cardiac stress test done, to get a baseline for his heart.

Scott had no symptoms, and he's been exercising regularly for the last couple years, so he was pretty sure that he did fine with the test - and seriously shocked when the test results concluded that his blood flow was down by at least 10%, showing that there was probably at least one blockage.

On Tuesday we saw our new and wonderful cardiologist, who told us that we should waste no time in getting an angiogram, which would tell us exactly where any blockages might be, and how bad they were. We scheduled the angiogram for Thursday.

An angiogram is a surgical procedure in which a wired tube is threaded through your veins and into your heart, where dye is then injected through the arteries and a camera can take pictures that show any places in the arteries where blood might be flowing less than freely. If there are blockages, the surgeon can push back the soft plaque with a balloon (angioplasty) and, if necessary, place a little expandable mesh tube (stent) in the artery to hold the plaque back and keep it from re-collecting itself in the same spot.

In Scott's case, he had one large blockage, which was backing up into an area where several arteries branched off. If he had waited a while before taking that test, if all those arteries had been blocked off, things could have been much, much worse. As it is, we really felt that we dodged a big ol' bullet!! They pushed down the plaque as much as possible, placed a stent in the area, and we could see on the 'before' and 'after' photos how well they had opened that artery up. Lovely!

Usually the wire is threaded from the groin up and into the heart; my husband was prepped for that type of surgery, but at the last minute his surgeon had to take an emergency case and Scott ended up with a hotshot new surgeon who threaded the wire through his wrist and arm instead. It was amazing - within an hour of surgery, he was walking down the hall and eating his dinner. And today, Scott says he feels just fine, barely even an ache in the spot on his wrist where they inserted that wire.

Modern medicine may not have much to say when it comes to treating advanced breast cancer, but it certainly has much to be proud of when it comes to treating the heart.

In this case, they treated both Scott's heart and mine. It does my heart good to know that he will be around for a good long time, loving and caring for our son and our extended family**.

** Speaking of which, I cannot thank my mom enough for her support and help in this, as in all else. I couldn't do it without you, mom - you are my hero!!

The Eye Of The Beholder

2011-03-03T00:15:00.001-06:00

Here is the latest photo of me, in new hairdo:

Chemo Sucks

2011-02-27T23:49:00.000-06:00

During my pre-chemo checkup this past week, Dr. Bouncy chirped on about how the last round of chemo was probably bad because it was killing cancer cells and that was causing toxins from the cancer to poison the system, and that meant that this round of chemo would probably be better.

I should have smacked him around a bit while he was within reach.

It was not the cancer cells poisoning the system. It was the chemo drugs poisoning the system. This round is kicking my butt big time. I'm nauseous, I'm bleeding, I'm exhausted, and I'm in pain. And it's going to get worse with each round. Two more to go, before switching to something else that will make me feel crappy in a different way.

And this is better than the cancer how?

It would be one thing, I suppose, if there was some hope - however vague and unlikely - that doing this might cure me, or bring me another decade of decent quality life. Even a few years of decent quality life.

But that is not on the table. The only time I will be off chemo from here on in is when I decide I can't take it any more, that death would be preferable. Or when chemo doesn't work at all, and death becomes inevitable. Or when the chemo itself kills me.

Whichever comes first.

Sometimes a good attitude is just impossible to muster. Sometimes I can't remember why I should even bother trying to muster it.

I'll try to muster it tomorrow. But for today, I just can't.

Hat Boxes Needed

2011-02-25T09:24:00.000-06:00

My hair started coming off my head this morning, just in time for my second round of chemo**.

This was in keeping with my day, which started with me not being able to find my numbing cream, so that they had to poke the large port needle into my swollen, bruised flesh without any nice, comforting anesthetic.

Dang.

I'll report more on all things port at a later date.

They slowed the Cytoxan drip this time, and so although I still got sinus pressure during the IV, it was not as intense as last time.

So far, I have developed a nasty headache (sinus and otherwise), and I'm much more nauseous already than I was last time, which is not happy making. And I have a sore throat for some reason (inside, as opposed to the port pain, see above), and the jaw is hurting again. On the other hand, so far my temps are normal, so that's a good thing. We'll see what tomorrow brings on the side effects front.

But the day ended nicely. Mom and I went to lunch, and then went to a wig and hat store and bought one soft knit nightcap sort of thing, to hold my hair from spreading itself all over my pillow and bed tonight, and then also got two really cute hats. I mean, really fun, silly, fancy, cute hats.

These will be added to the darling beret that my brilliant friend Timary made for me. It's a new design of hers, so I hadn't seen it before. You can find her patterns (including the slouchy beanie beret) at her Etsy store right here.

Thing is, when I got the hat she sent, I thought, "Ooo, FUN!!" And then I thought, "Ooo, the colors are so ME!!" And then I thought, "Ooo, this yarn is so soft and pretty!!" And then I thought, "Hey, this yarn looks sort of familiar, actually..." And then I realized... Timary bought my yarn a while back, and put a lot of work into making something out of it, AND THEN SENT IT BACK TO ME. It was my yarn!!

So now I am going to send her more. Some of it will be for her... and some of it will be for the really cute 20's Flapper Hat. Because I don't crochet, and am not up to learning how at the moment, but she has designed one darling hat, I must say!!

So now I have these really cute hats, and no place to store them properly (the only hat I've got stored/displayed currently is my floppy old straw hat, which is sitting on the head of my son's wooden rocking horse. It's very fetching, but not very protected). So if anybody just happens to have a nice big hatbox sitting around, and wants to donate it to a needy cause, I'm it.

** I forgot to post this last night, and this morning half my head came off. I think my toilet is going to start horking up hairballs, in a weird sort of harmonic convergence with The Cat...

They Don't Tell You This Part

2011-02-21T22:21:00.003-06:00

They told me that I would probably start losing my hair, probably in big clumps, somewhere between 2 and 4 weeks after my first chemo treatment.

I am slightly ahead of schedule, since I started losing my hair last night, 3 days short of two weeks.

BUT I'M NOT LOSING IT FROM MY HEAD YET...

(nobody mentioned this particular possibility, I wonder why?)

:D

Chemo: After The First Treatment

2011-02-18T23:26:00.001-06:00

The Adriamycin/Cytoxan chemo cocktail kills off your blood cells. White, red, platelets, everything.

This leaves you at risk for several nasty side effects, one of the most concerning being a vulnerability to various types of infection. Without your white blood cells, an otherwise minor infection can become deadly.

So 24 hours after the chemo treatment, I had to go back to the infusion center to get another IV - in this case, a bag of saline (to make sure I was getting well hydrated) - and an injection of Neulasta. Neulasta forces your bone marrow to make white blood cells at a rapid rate. Unfortunately, it can't make the white blood cells travel out of the marrow at a greatly increased rate, so the packed-up cells do tend to cause bone pain in the most productive areas - the hips, the spine, the thigh bones, the breastbone and/or collarbone.

So, more side effects added to the ones from the chemo and the ones from the anti-emetics and the ones from the pain medications.

Hooray.

For the first 5-6 days, I had a fever, headaches, nausea, joint and bone pain, fatigue (sometimes sleepiness, sometimes weakness), shortness of breath, constipation and diarrhea (swinging back and forth, what fun!), intestinal bleeding, cough, a weird taste/feeling in my mouth, sinus pain, ringing/hissing in my ears (I am told this can be a sign of liver toxicity), poor quality sleep.

Hydration is essential - without it, mouth sores and more severe side effects are expected. I am told to drink at least two litres of water per day. I am a dehydrated creature by habit and preference, so drinking this much is a real challenge, and sometimes it's a very uncomfortable one. But I do it, because I suspect that I'd find the results of not doing so even less appealing.

I am also instructed to swish/gargle with saltwater and/or baking soda several times a day, and to avoid acidic things like tomatoes and dehydrating things like caffeine. Also no herbal things for several days, and no anti-oxidant supplements during the course of chemo (there is some controversy over this last item - the general advice is to follow your oncologist's directions).

The last couple days have been a bit better as far as side effects. The fever has dissipated, the nausea and headaches have lowered to a dull sort of background noise, and some of the bone pain has abated somewhat. Other side effects are still there to one degree or another. I am told that on or about Day 10 there can be a sort of Second Wave, when the blood cells are at their low point.

In the meantime, I am grateful for small mercies. Especially since we have another member of the family in health crisis mode, which has kept my mom hopping - and me to a lesser extent.

On Monday morning I will have the surgery to put in the port and catheter. On Thursday I am scheduled for my second round of chemo. I am told the side effects are accumulative in both range and intensity with each round. Can't say I'm looking forward to it. But I will try to look at it as an opportunity for this Intrepid Reporter to give you the straight scoop on chemo treatment.

Early Days of Chemo

2011-02-12T11:27:00.000-06:00

I'm going to report on the experience of having chemo for a while now. Those of you who have already had it probably won't be interested in what you already know, but for those who are curious or those who are about to have it, I hope this will be of some help.

The first thing is the meeting with the nurse practitioner, who goes over your likely side effects and gives some pointers on how to handle them... and how not to handle them. No herbs for a few days before and after, lots of water, eat 6 or 7 times per day, etc. Then a brief stop in the waiting room, and then into the infusion room for the chemo.

The infusion room for my oncologist is in the clinic, rather than being in a hospital setting. I've been in there already for my IV bone drug (ibandronate/Boniva), so the environment and setup is familiar now.

It is a fairly large room, broken up into four sections, with windows on one end and the open end facing the nurses' desk opposite. High on each dividing wall there is a flat screen television, so that the patients sitting along the walls can watch something relatively insipid and harmless while they are held captive by their IV lines and needles. I like to get treatments in the morning, so I always get those one of those morning television shows with the cooking tips and news of the stars and weather reports. The televisions are set to SAP, if you want to know what's going on, you have to read the subtitles.

The chairs are set along the dividing walls, 4 or so per side. Each has a tray attached to each side, and is a lounger-style chair so that you can put your feet up if you like. There is a more standard hospital-style chair next to it, in case you want a support person with you. My mom is with me, as she has been for most of my appointments. It's a comfort, and also it is helpful to have a second point of view and an advocate there when things get tough.

There is also one of those poles from which they hang IV bags, with a pump/monitor attached. The nurse sets you up with your IV; how she does this depends partially on whether you have a port or not, and what sort of drugs you are to take.

I don't have my port put in yet, and I have very difficult veins. We have called ahead to make sure that the one nurse who has been able to get into my veins well is going to be there. She meets us at the door and relates that both she and Dr. Bouncy are concerned about getting these drugs in through the veins, since they are very dangerous if the needle slips out (as has happened to me before) and allows the drug into the tissue. If she cannot find a good solid straight vein, and a spot unscarred enough to get a solid fit with the needle, the treatment will have to wait until I get a port put in.

She puts warm towels on my arms, to help bring the veins up closer to the surface, and we talk a bit about her kids and the weather. She offers a choice of juices or ginger ale - the next day, when I go in for the Neulasta injection, I am offered crackers for nausea (I am gluten intolerant, so I had to refuse, but I appreciate the offer). She finds a good vein lower down in my arm, gets the needle and line in well, flushes my veins with a bit of saline solution, and starts with the Adriamycin.

Adriamycin is a 'push' - it is attached to the line down near the arm, and pushed in by the nurse through two syringes (to put it all in one syringe would make it too large and unwieldy for the nurse to handle, and since the process is delicate, you want your nurse to feel very much in control). She checks occasionally to make sure that we are getting blood in the line when she pulls back on the syringe a bit - a sign that the needle is still in the vein. I have trouble detecting this, as the Adriamycin is a bright red, but she tells me that she has developed 'an eye' for it.

After we are done with the Adriamycin - about ten minutes or so - we move on to the Cytoxan. This is a regular IV drip, a colorless liquid in a large bag. After a while, I start feeling pressure in my eyes and face - and find out from the nurse that Cytoxan can cause sinus pain for some people. She slows the drip down in an attempt to mitigate this effect somewhat, but at this point it's a bit too late. We continue with the drip and then give me an extra bag of saline - hydration is important, and I tend towards dehydration, so they want to give me a good start. This is especially important because the Cytoxan can be very irritating to the bladder, so they want you to pass it through as quickly as possible.

We arrived in the IV center around 8am, we are done with the IV at 11:15. It will be slower next time, because over the next days I continue to have sinus problems from the Cytoxan. On the way out, I use the bathroom and find that the Adriamycin has caused me to paint a beautiful sunset sort of tableau in the bowl... bright red in, bright red out.

Mom and I go to lunch afterwards, then go to her house, where fatigue hits me and I pass out on the couch for a couple hours. I wake myself up a few times snoring - the sinuses continue to be a problem days later. I go home, have a bit of dinner (chicken with rice), watch a movie/dvd with Scott. I go to bed early, headachy and a bit more nauseous; I do seem to get more nauseous in the evening.

So that is the first day. I'll report on the rest later - for the moment, I'm tired and nauseous and headachy and a bit feverish, so I'd better go stuff myself with meds.

Wheeeeee....

The Hits Just Keep On Coming

2011-02-08T19:55:00.001-06:00

Dr. Bouncy says that if the progression of cancer is not stopped, I will be wheelchair bound within a month and dead within six months. If my hips break, I'm thinking that six months is a pretty generous and unrealistic goal.

He has nothing else left to throw at it. The more likely therapies have not done very much for me, and now the cancer is racing ahead like a bullet train. So it's the nasty chemo cocktail, and a very slim chance that it will even touch the mets in the bones, which are what is torturing me and what is killing me.

So not good news.

As they say, 'Too Much To Do, Not Enough Time To Do It In.'

We can only hope. And take advantage of the time we have as much as we can.

And prepare.

Bad News

2011-02-07T18:55:00.000-06:00

Well, the scan results are back, and the news is very, very bad.

I was expecting bad news. My back, plus a spot on my back ribs and another on the front ribs, have been pretty painful for the past couple weeks, and my hips have started hurting again.

Now I know why. That part isn't a surprise... well, not entirely. Like I said, I was expecting bad news. I just wasn't really expecting the news to be quite THIS bad...

Over a dozen tumors, most in my bones - including spine, neck, ribs, jaw, pelvis, both femurs - many with fractures. Most are intensely active. I also have a nodule and a partially collapsed lung, possibly a pulmonary embolism, some soft tissue tumors in the neck, chest and hip/leg muscle, and 'activity' in the colon, liver, lung, and thyroid.

Unfortunately the only tumor available for potential biopsy/oncotyping is very small and not even registering very much - the only small and 'mildly active' tumor of the bunch - so I'm afraid it might not be much help for determining effective treatment.

This all in a few months, which is very discouraging. And scary.

My appointment with Dr. Bouncy is tomorrow morning. I'll report more after consulting with him.

Not a good day.

Two Important Breakthroughs

2011-02-05T09:47:00.000-06:00

One of the difficult things about having stage 4 breast cancer is that most of the money being spent on breast cancer research - especially the really ground-breaking research - is in prevention and detection, rather than on what to do with cancer that has spread. This is very discouraging for patients whose cancer has recurred or spread, because once it metastasizes, breast cancer is both extremely deadly and extremely painful. To be told that you have metastatic breast cancer is the experience of not only hearing your own death sentence, but also finding out that you are going to be tortured first.

One of the reasons metastatic breast cancer is so painful, is that sooner or later the majority of us get tumors that ravage our bones. To make it worse, the cancer in our bones is generally more resistant to chemo and hormonal treatments than the cancer in the soft tissue. Once in your bones - especially once it's in your spine - the cancer can really set up camp and then send out invaders to other parts of your body, like your brain, lungs, and liver. So the bones torture you and debilitate you, and then use other parts of your body to kill you.

Which is why it's exciting that they have now found two important ways in which breast cancer tumors - and in one case, bone metastases - change their microenvironment in order to outsmart our immune systems and cancer treatments. Knowing this could allow researchers to develop new treatments that could help to extend lives and extend functionality for those of us suffering from metastatic breast cancer.

They won't develop these treatments in time for me, but it gives me hope for my nieces and my friends' children.

And that, dear readers, is a Very Good Thing.

So here (with thanks to the lovely Donna and her excellent blog) is an article on Hsp27, which blocks immune cell activity against tumors and also helps them to grow.

And here is an article on Jagged1, which allows cancer cells to alter bone growth.

Here's to Hope.**

**Although most of my hope in this case resides in the fact that the likely treatments will be pharmaceutical, and therefore potentially profitable enough that Big Pharma and the FDA will move on these discoveries, as they have not done on so many other promising but less profitable treatment options.

Scarred. Or Do I Need That Extra 'r'?

2011-02-04T00:36:00.001-06:00

I had my PET/CT scan this morning. I'm pretty anxious about the results - several things have taken a rather rapid downswing lately, and I'm fairly sure that Tuesday's visit with Dr. Bouncy is going to be uncomfortable for all of us.

There also was a great deal of trouble getting into my veins. I've developed a lot of scar tissue, and with the bone meds and blood tests and who-knows-what, I've got a lot of puncturing coming at me in the future. My veins have always been exceptionally tiny and rolling and collapsing and generally very difficult to get into, even at the best of times. So although I've put off the inevitable for as long as possible, I think I won't have long before it becomes necessary for me to get a port/catheter put in.

I'm not looking forward to the whole thing one single bit... but I don't think I'll have a choice, not for long.

Since I had to inherit my dad's big bones and huge feet, why couldn't I have inherited his big veins, too? It's ridiculous that a person as big and robust-looking as myself should have such tiny, fragile, fairy-like veins.

My son is going to be in a production of 'Once Upon A Mattress', which is based upon the fairy tale 'The Princess and the Pea'. In this fairy tale, my veins are the pea.... and I am the twenty mattresses and twenty featherbeds.

I guess that makes my husband the princess?

Um. Maybe not...

The Fog Of War

2011-01-27T12:57:00.000-06:00

I've been having a lot more trouble with fatigue lately. It's an issue that is very common for cancer patients, regardless of what sort of treatments one may or may not be having at the given moment. The hard thing about it is that cancer-related fatigue is different from the sort of 'getting tired' that healthy people have. Because it is different, it is nearly impossible for a person who has not had cancer to understand what this fatigue does to us.

First of all, it often hits us out of the blue. One minute everything is running per normal, the next minute, without warning, we are (sometimes literally) collapsed on the floor, mumbling into the carpet.

Second of all, although the fatigue can make us sleep for hours on end, we often wake up and still find ourselves exhausted. Sleep is not always restorative when it comes to cancer-related fatigue. You just have to deal with feeling like you've been run over by a truck. Sometimes you deal with it by dragging yourself along your routine by sheer force of will, and sometimes you deal with it by sitting and staring mindlessly at the television until the fog clears. Sometimes you deal with it by turning around and going back to bed.

Worst of all - at least for me - is that it often renders me unable to think clearly or function adequately. This is often the hardest thing for people to understand. I know there are things I have to do, but it's like I'm working with a huge sheet of cotton batting between me and everything else. I forget the thing I was thinking about a minute ago, I forget appointments, I forget what I have gotten up to do. I read the same paragraph over and over, and end up with no clue what it was about. I watch a television show, and realize halfway through that I can't remember a thing about the last ten minutes... the experience has been completely erased from my consciousness, as though it had never happened. People talk and I try my hardest to listen - but they sound like the teacher in the Charlie Brown specials: "wah, wah, wohhhh..."

Cancer presents me with a much more complicated schedule and set of organizational demands... and then takes away my capacity to deal with these things effectively. This is really hard, particularly when organization has always been a weak suit and when so much of my coping strategies and interests are predicated on intellectual pursuits. I live nearly entirely in my head - and now my head is full of oatmeal.

A typical example: I was talking on the phone with a potential customer the other day, and she was asking why I wasn't going to the Weaver's Guild spin nights, or to Knitter's Guild meetings. I tried to explain why I haven't been spinning much lately, and why it was impossible for me to commit to going somewhere for social purposes two weeks in advance. I tried to explain that with Stage IV cancer, my energy levels are extremely uneven, and that there are days when I barely can make it from bed to the couch, much less get my coat on, lug my wheel (that 13 pounds is starting to feel painfully heavy lately) out to the car, and then spend several hours trying to concentrate on both spinning and conversation.

She clearly didn't get it. She quite possibly thought I was lying in order to avoid meeting her. She probably won't believe me when I tell her that I literally kept forgetting to call her back in the last couple days, either.

Intentions of Gold, Brain of Oatmeal...

So I don't expect most folks to completely understand this, and I certainly can't expect them to remember it at all times. But it might be helpful, if you are the friend or family member of a person with cancer, to read this article on cancer-related fatigue from the National Cancer Institute. It might save you some frustration with your loved one, and save them from feeling embarrassed or hurt or similarly frustrated with themselves and with you. If nothing else, it might save everyone the tiring effort of having to go through the explanation of their inability to function per normal again.

...And Sometimes It Doesn't

2011-01-27T00:35:00.002-06:00

If you have read the comments on my blog, you know that on occasion I've heard from a very kind and warm blogger named Daria. If you've looked at my 'Followers' list, or my Blog List, you will find her there, as well. You will find my comments on Daria's blog, as well.

Unfortunately, as of this past weekend, you will not find Daria herself on this earth. On January 22nd, Daria was stolen from her friends and family by Breast Cancer.

We will miss her.

Life Goes On

2011-01-22T01:28:00.000-06:00

Brief reporting in:

Things haven't changed much on the health front - the scan won't be until the first week of February, and the report won't come in until the next week. I'll update you when I find out more, myself.

Son is starting another semester of college, and as usual there are bureaucratic snafus and issues that must be addressed.

Son is also doing follow-up appointments on the tonsils and related issues, and my darling husband is also having fairly major health-related issues, so the three of us are basically keeping the medical establishment floating. We're so proud.

When we aren't sitting in waiting or exam rooms, we are traveling to and from doctor's offices. Which means that we are spending a LOT of time shoveling snow. Minnesota is being particularly Northern this winter.

I'm getting a fair amount of knitting and reading done. Not at the same time - I'm not that talented, unfortunately. But I've finished a couple pairs of socks, a scarf, started another pair of socks (frogged a nearly completed but too-large sock in the process, and then re-started), and designed and started another scarf in the past few weeks. Not too bad...

That is about it. Oh - except Mom, that birthday balloon is wrinkled but still floating. Rather like me!

Really?

2011-01-14T00:47:00.000-06:00

According to the evidence, I haven't written anything here since December.

I don't believe the evidence. It can't have been that long, could it?

On investigation, it turns out that what little I have written in the last two weeks has been posted on the other blog. So I guess you'll have to go there, if you want to check up on the phlegm-filled fun that has been my life lately...

More recently:

I wanted to have a PET/CT scan done, because my feeling is that things have progressed, and not in a good direction. I've been having nasty pains in my spine and ribs, I've been more tired recently, and the lump in my chest that I use as a sort of cancer yardstick has been growing lately.

I ended up having to pass on the scan scheduled for last week, however, since I couldn't lay down for more than a minute or two without trying to forcibly eject my lungs. That wouldn't have been conducive to a nice, clear picture of my innards. So I saw Dr. Bouncy on Monday, but we didn't have too much to say or do that was useful, since we didn't have a scan to go over**. He just okayed me for the bone meds IV, and off I went to get perforated (please remind me not to let them fob the cute little youngsters off on me - they are sweet, but they never can get into my veins properly, and I do not want a repeat of that chemical burn experience, thanks. As it is, I now have beautiful abstract versions of 'Starry Night' decorating the middle section of both my arms).

So I have another appointment to see Dr. Bouncy again next month, and I will have a scan just prior; my job before then is to get rid of this stupid cough and respiratory grot.

For now, I think much of the viral part of this grue is over with, but the bacterial infection that took advantage of the dip in my immune function has hung on doggedly. So I've finally given in and started up on the antibiotics, even though this means that I have a very high likelihood of developing the flu as a result. Don't ask me why I get the flu 9 out of 10 times I take antibiotics. I just do.

Per my request, however, my GP prescribed the same antibiotics I took for my ear infection last spring, as the fallout from that was relatively mild. We'll keep our fingers crossed - and take lots of probiotics.

**Cancer gives people a very weird perspective on things. Dr. Bouncy actually thought he was being encouraging and optimistic when he told me, "Well, the pain might not be the tumor growing. Sometimes the tumor shrinks and leaves an empty space, so then the pressure crunches the vertebra down and causes stress fractures." So instead of being filled with tumors, my spine might just be crumbling, instead? Good news!!!

Aaaaaaaaaaaaaahhhhh... choo.

2010-12-31T13:09:00.000-06:00

I am sick.

Okay, that sounds a bit odd, I suppose, since you know that I am really, seriously, terminally ill.

But the fact is that I sort of compartmentalize the cancer stuff as much as possible, when it comes to dealing with the ucky symptoms - I don't think of it as being sick per se, I think of it as a process involving unpleasant but inevitable challenges that crop up so that I can find ways of living around them.

That's different from being sick.

I used to get sick at the drop of a hat, at least once a month. But since the cancer diagnosis, I've been stuffing myself full of vitamins and herbs (Vitamin D3, people... get tested and make sure it's in the upper end of the 'normal range'), and taking a medication that regulates (in my case, up-regulates) the immune system**. If you ignore the bone pain and the stuff that glows in my scans, I've been remarkably healthy for the last couple years.

Since I can't ignore the bone pain, I really resent anything that makes things worse. I figure I should be immune to the everyday sort of viral and bacterial nonsense. Don't look at me, I gave at the office.

So now, for the first time in the two years since my diagnosis, I have a real live Bug. Coughing, raspy voice, throat that feels like it's being stabbed by knives, red raw nose, the whole ten yards.

Darn it!!

To make matters worse, the immune system medication and narcotics cancel each other out - so I can't take cough/cold/flu medications, because the stupid cough suppressants are pretty much all some form of narcotic or other. So I just have to live with the symptoms until it feels like going away on its own.

Darn it, darn it!!!!

So much for ringing in the New Year. I'm coughing it in.

Christmas is definitely over. Bah. Humbug.

**I'm taking other medications, too, but those don't affect the immune system, or the cold medications available to normal people.

Foggy

2010-12-28T08:30:00.000-06:00

If you've had a conversation with me lately, I apologize.

For some reason, I seem to be working in a sort of mental fog. Whether it's due to lack of sleep, or the distraction of pain, or something more sinister, I'm not certain, but the result is the same: I don't seem to be able to keep my social focus for very long. From time to time during a conversation I find myself answering as vaguely as possible - or worse, pretty much at random, my direction based on a fuzzy impression gained from the last word or two of my companion's most recent utterance. This renders me the conversational equivalent of a 4-year-old engaged in 'parallel play'.

Innocent Bystander: So after the bypass, they put in a pacemaker. But they weren't able to regulate it properly, so he was getting shocks every few minutes, regardless of what his heart was doing. He ended up in the hospital five times last month, we're not sure how much damage might have been done. It's just been a nightmare.

Me: I never remember my dreams, but maybe that's a good thing. If I have nightmares, I'm not aware of it.

I.B.: ....

This seems worst when I'm talking on the phone, perhaps because of the lack of visual cues. I'm not always aware that I've wandered vaguely off track, but I do realize that my phone conversations have slowed down lately, probably due to the other person having to labor to figure out what to do with my apparent non sequiturs. I don't think I've become a complete moron in the last month or so, but if you have had that impression lately, please reserve judgement for a while and be patient with me. Gently lead the conversation back to where you want it to be - I'll catch on eventually.

Either that, or I won't. In which case, feel free to say things that you can't say to anyone else. I can't repeat or be shocked by what I don't hear. Just finish off with something innocuous like, "And then I had some chocolate," and you can count on me to be your most understanding, tolerant friend ever.

A Christmas Carol

2010-12-22T03:46:00.002-06:00

The last week has been a difficult one for my family.

My health is not doing as well as we'd like.

My son had his tonsils removed on Friday, and he's feeling a bit blue about having to be restricted in his holiday feasting.

Most importantly, my dad's sister, for whom I am named, died this week. Worse, she died on my dad's birthday.

We have had several beloved family members die during the holiday season in the last couple decades, and I was diagnosed with my cancer during the holidays - which makes this a bittersweet time for all of us.

And yet the Yuletide is my favorite holiday celebration, and our family has a huge number of traditions that we have built up around it. It has always been, and remains, a busy and bustling time full of social and practical obligations and activities.

In the last couple years we have had to cut back and simplify, given the exigencies of the economic times and the waning physical capacities of both my mom and myself. We let each beloved old tradition go reluctantly, regretfully, knowing that next year we will no doubt be forced to give up more.

The empty chairs at the hearth are growing more numerous, and the Ghost of Christmas Yet To Come sits with us at the table. It is impossible to ignore.

And yet, it is also impossible to ignore the joy of having friends and family to share our meals and our homes. At night the moon and the lights shine stained-glass color on the pristine snow, and during the day birds flock to the feeders and bounce along the frosted branches of the trees. The cider and nogs still warm us, and the songs of the season still exalt. The fire on the hearth and the gaily wrapped gifts under the tree are no brighter than the love that glows in our hearts.

We are human, frail and imperfect and impermanent.

We are blessed, every one.

Prescription Drugs: Think About It

2010-12-17T00:01:00.001-06:00

Drugs have been a subject of conversation in our family lately. Not only because of my health crisis, but also because of the health situations of several people that are near and dear to us.

Now, my family is particularly prone to having bad reactions to drugs, so this concern is not a new one for us. But it carries more weight in the past year or so. I am experiencing serious side effects from drugs prescribed for my health condition. My sister-in-law recently had two separate life-threatening complications from the anesthesia medications given to her during a recent surgery. And unfortunately, one of our family members is currently dying, and there is legitimate reason to believe that this may in some part be due to side effects from the drugs given her by her doctors.

Drugs can be life saving, and they can improve your quality of life - but they can also damage or kill, and all too often we do not give enough thought to the potential consequences of taking the drugs prescribed by our well-meaning doctors.

According to Mercola.com :

"...prescription drugs are responsible for an estimated 700,000 ER visits a year due to adverse drug reactions. And adverse drug reactions from drugs that are properly prescribed and properly administered cause about 106,000 deaths per year, making prescription drugs the fourth-leading cause of death in the U.S. The truth is prescription drugs kill more than twice as many Americans as HIV/AIDS or suicide. Fewer die from accidents or diabetes than adverse drug reactions."

There are things you can do, however, to lower the risk for you and your loved ones.

~ First of all, keep a readily available list of the supplements and drugs that you are taking, and update it regularly. Take this list to your doctor's office and pharmacist whenever you go there. Memory is not reliable, especially in the stressful environment of a doctor's office..

~Don't make the mistake of not taking supplements as seriously as prescription drugs. Anything that is strong enough to affect your body positively is also strong enough to potentially affect it negatively. Supplements can interfere with or interact with drugs in a significant way, so you should keep your doctor and pharmacist apprised of any changes in your supplement regimen - even multivitamins should be on that list.

~ And don't forget over-the-counter drugs, even the ones that you only take on occasion, like allergy or pain medications. Like supplements, they can interact with other drugs in significant ways.

~ Go over your list of supplements and drugs with your pharmacist on a regular basis, especially whenever your drug regimen changes significantly. Doctors do not have the training and resources that your pharmacist has on the ways that all the different drugs interact with one another.

~ If you are having a side effect from a drug, don't be afraid to talk to both your doctor and your pharmacist about it. There may be alternatives that will work better for you, or things that you can do to minimize those effects. And perhaps more importantly, your doctor and pharmacist will know if a particular side effect is likely to be a sign of something serious going on.

~ If you find that you have gradually accumulated a large number of medications, be sure to talk to your pharmacist and/or doctor about whether you might wean yourself off of some of them. Certain conditions (particularly chronic diseases and mental illness) can tend to cause a 'snowball effect', with new drugs being added as old ones become less effective. Unfortunately the elderly are more prone to chronic conditions, and are also more prone to over-accumulation of drugs in their systems, and thus can easily become over-medicated.

~ Read the printout that your pharmacist gives you with your prescriptions, and read the labels and information sheets that come with your drugs. Also look up the side effects for any medications you or your loved ones are prescribed - there are a number of good websites that can help you with this. Be aware of the signs of serious complications that can be caused by the drugs you are taking.

~ You can sometimes get good information on side effects from consumer-based websites and websites/lists designed to provide information for people who are dealing with specific conditions. These websites can also sometimes provide you with information about treatment options of which your doctor may not be aware.

~ Remember that you are not only a patient, you are a consumer. You have the right to ask questions, and you can refuse treatment that you don't think is effective or safe for you (or your child, or your aging parent).

Virtuous

2010-12-14T10:01:00.002-06:00

My good friend Roberta wrote this post about an issue that needs to be raised.

A recent article about Elizabeth Edwards' life and death mentioned the fact that the Westboro Baptist Church was planning to picket her funeral. It took me a bit to wrap my head around that - how can someone picket a funeral? Exactly what could they be objecting to? And who would they be trying to reach with such behavior?

It's beyond my comprehension, that anyone could spend so much time and effort on being cruel to people who are already suffering.

Well, it turns out that the Westboro Baptist Church is a group of folks completely without bias when it comes to Hate. They abuse everyone equally, which is awfully egalitarian of them. But they are particularly fond of picketing funerals.

Evidently there is more satisfaction in kicking people who are already down.

Of course, there is one area in which the Westboro Baptist Church members are less than evenhanded - and this is why Elizabeth Edwards and the members of the military who have given up their lives for their country have been lucky enough to draw the WBC's short straw. The Westboro Baptist Church particularly loves to lavish their attention on funerals of people who are likely to draw media attendance. Evidently any attention is good attention, and the Westboro Baptist Church is willing to brave God's wrath on the whoring issue when it comes to parading their naked souls in front of the media.

Well, it's all a matter of taste and very basic good manners. And of course it's a moral issue. But it's also a matter of rudimentary logic and theology.

Frankly, even if we are to assume that folks with cancer are suffering a prolonged, agonizing death and then suffering eternal hellfire in payment for some sin or other - committed either by the individual or by society in general - what business is it of these members of the Westboro Baptist Church to stand in judgment? Whatever happened to that whole 'cast the first stone' passage of the New Testament that these so-called Christians are so fond of? It seems to me that Jesus was pretty specific about letting God be the judge on these issues.

Of course, they might not be so sure about how that judgment might fall on their own heads when that time comes. It's one thing to have the courage of one's convictions. But these paragons of virtue don't even have the guts to cast that stone while the person in question is alive and able to respond.

How is anyone to judge that?

One More Lost...

2010-12-09T19:18:00.000-06:00

It's not that I know much about her, or that I approve of all her choices, or that our lives have been similar in many ways... but it was sad to learn that Elizabeth Edwards died on Tuesday, so soon after learning that her cancer had metastasized to her liver.

I feel for any woman who is struggling to deal with this dreadful disease, which turns our own cells into the instruments of our destruction. It is not a gentle or kind illness. Breast cancer robs us of comfort, of functionality, of dignity, often of our very selves, before it takes our lives.

It was just over three years ago that Ms. Edwards learned she had Stage IV breast cancer - ER positive, the most common and deadly sort of breast cancer. The cancer that I share.

The average lifespan post-diagnosis for Stage IV breast cancer is 2-3 years, so in this - if nothing else - Elizabeth Edwards was fairly average. My cancer was diagnosed two years ago; at that time it was more advanced than Ms. Edwards' was when she was diagnosed. She chose to go through chemo treatment, and so far I have not. I do not know what her diagnosis was as far as aggressiveness, but mine is the most aggressive possible. It has eaten through much of my pelvis, and at the least is now also busily working away at my spine and ribs.

She understood that this was not a battle that could be won, and so do I.

My son will hopefully graduate from college in the spring of 2012. My dearest hope is to see him do so. I wish to be, as Elizabeth Edwards was, just a bit above average.

My sympathies go out to Ms. Edwards' children, family, and friends. My hope, although it is not an optimistic one, is that Senator Edwards and his fellow legislators use this loss as impetus to do something about the current shameful state of affairs pertaining to research on prevention and treatment of this terrible and all-too-common disease.

Scanning technologies are a good thing - although they, too, could be vastly improved so that they don't raise our chances of getting cancer as they search for existing tumors - but we won't ever find a cure until we stop spending most of our money on studies of already-approved drugs that we know don't really work. We need to institute a wide-scale program that brings doctors together internationally, that encourages them to share information in an organized way, and that funds the study of promising new treatment options.

I can't think of a better way to honor Elizabeth Edwards than to pass legislation that would do this.

Playing Catch-Up

2010-12-03T17:36:00.001-06:00

I should have something clever to say, or something interesting to report, but I don't. The holiday season is upon us, and I am very busy gearing up to my usual Holiday Fever pitch. This requires me to studiously ignore what is going on in my body.

For what it's worth, I suspect that the Tamoxifen/Ibandronate combo is doing decently for my bones, but is letting the soft tissue stuff get bad. The Aromatase Inhibitors do decently for my soft tissue stuff, but they let the bones get bad. So I can let the bones go, which wrecks my quality of life and functionality, or I can let the soft tissue go, which eventually will kill me off.

What's behind Curtain C, Bob? (Oh, right. I don't like Curtain C, either...)

Beyond that, there's dealing with the new roommates, rearranging the bedroom furniture, holiday shopping and decorating, figuring out what to do for the annual Christmas Eve Performance, going to concerts/shows (many of them featuring the kid), writing out and sending the holiday cards, cooking, knitting holiday gifts (panic! panic!), holiday decorating, getting the kid's school stuff figured out, plus helping visitors and socializing with them (the last bit is fun, but it's all time-consuming).

Heck, really we need to rearrange the living room/dining room/kitchen furniture, too, and reorganize the entire house. My fiber pursuits are taking over the entire central part of the house (like The Blob, but fuzzier - the Flob), and the spouse has taken to using the porch as a massive Junk Drawer. Probably as a response to territorial encroachments by the Flob. It's been months since we've seen the dining room table...

That all seems overwhelming and impossible to manage. So we'll start small. Maybe tomorrow we'll manage to put up those cute, tacky little lantern-on-a-candy-cane stakes I snagged on Black Friday. Theoretically all it takes is for us to stake them into the ground. But since the ground is frozen and we can't drive them into the ground from the top, because the solar power panels are affixed on the tops, I suspect the project will involve at least an hour of husbandly struggle, complaints, and muttered swearing.

Joyeux Noel, y'all!!

Ow, my... well, my everything, actually...

2010-11-11T16:44:00.003-06:00

First of all, Las Vegas is really great. Everything is huge - the mountain ranges are huge, the hotels are huge, the shows are huge, and the buffets are really, really, really, really, really huge. I mean HUGE. We kept going to the same one, because it was so awesome that you really couldn't appreciate it in one sitting.

So we didn't. We appreciated it in four sittings.

And we left every single one just before we exploded. Seriously, it's amazing that we can even think about food without splitting at the seams. And I ignored the No Gluten rule completely, with the result that I am swollen as a tick and aching in every joint.

I'm glad to be back to the routine - but boy, did we have fun. I'll report more on my other blog, but probably in a day or two, when I've partially recovered. For now, I need a nap.

And a lot of digestive enzymes...

Coasting

2010-10-29T00:00:00.003-05:00

I haven't written anything for a while because there isn't an awful lot happening that is reportable.

The ibandronate/Boniva has helped with the hip pain to a reasonable degree. The tumor in my spine is making itself felt, but I'm used to moderate back pain - it's not pleasant, but I can handle it. I still need a cane to get around, but I can walk half a block or so without knocking myself out for the day, and I can sleep for several hours at a stretch. This is a good thing.

We're taking advantage of my little spate of increased function by going on a very small vacation, which I am busily planning.

I'm also taking advantage of this reprieve by driving around and running errands. I know that doesn't sound like a lot of fun, and certainly it tires me a lot more than seems reasonable, but I'm enjoying myself. It's amazing what a little trip to the grocery store or library does for the soul when you haven't been able to do anything constructive for a long time.

We also got a used van, and are planning to get a wheelchair/scooter lift put in at some point, so that I can use it easily when the hips become non-functional again.

And I think that's all the news that's fit to print!

Nothing Much...

2010-10-18T09:52:00.004-05:00

A few random updates:

I got a present from Denise the other day. Thanks, Denise!!! It's a really awesome felted critter, it's so cute and reminds me of my parents' dog. Except that she's not orange and pink, and she has a totally different tail and ear set, and she moves and begs for stuff, and she has lumps, and she growls and barks at people who come to the door... where was I going with this?

Oh, yeah. Unfortunately my camera is broken, so I can't post a photo of the critter for you. So you'll have to link to her blog and check her stuff out for yourself. It might take you a while to get to some of her real critters - she's very eclectic, so there's something new and wildly different every day. But you can learn a lot about felting, and maybe about dyeing, and definitely about creativity. Denise is a closet genius. If she were scientifically inclined, she'd be Tesla, or maybe Edison, except with a braid.

The Tamoxifen, or the Boniva, or some combination thereof, is giving me monster joint aches. Wheeee. The flip side of that is that at least for the moment, the Boniva really helped with the bone pain in the hip. And while joint aches are not really great for the Quality of Life, they totally trump bone pain.

The nausea, on the other hand, pretty much sucks. But I guess you can't have everything.

My giant Birthday Balloon is still floating in the living room. It's starting to look a bit like me - a bit withered, but still trying. I appreciate the effort, so I refuse to get rid of it until it sinks to the floor. At which point I'll throw it away, but I'll feel guilty about it, because it was trying so hard.

Maybe if I were a better person and more prepared, I would have a helium tank around here so that I could perform resuscitation - but I'm worried that if I had a helium tank I would do something wrong and blow up the house with it. Or maybe fill the house with helium so that it breaks free of the foundations and floats into the air and then comes down on some poor woman with striped socks and red sparkly shoes and then hordes of squeaky Little People would smack me with giant lollipops and force me to go camping in a field full of poppies and ragweed so that my allergies would knock me out until the flying monkeys could get me.

I'm afraid of the flying monkeys. So the balloon is going to have to continue on its current course and fade away to a lumpy, annoying, shapeless, dysfunctional thing that will need to be dealt with somehow, in spite of its best efforts.

The parallels are obvious.

And finally, a suggestion:

The fall apple crop is awesome this year. Seriously, go out into the countryside, enjoy the last few autumn leaves, visit a farm and pick up a bag or two of your favorite apple varietal. That way you will feed a small independent business and yourself, at the same time. It's a Win/Win!

While you are there, pick up a pumpkin or two - Halloween is only a couple weeks away, and it's never too early to enjoy Halloween. The Cat is trying to prepare for Halloween by practicing at turning black. So far all she's managed is throwing me Black Looks, but she's practicing that a lot, so she might get there eventually. Or she might manage to turn me into a Newt. You never know.

This is an old photo of The Cat, but it gives you an idea of what I put up with every day in terms of Attitude. I didn't photoshop in the eyes - she's got blue eyes, and sometimes photos just come out that way. Or else maybe the camera picked up on the quality of her soul, I can't be certain...

Metastatic Breast Cancer Awareness

2010-10-13T18:08:00.005-05:00

Today is Metastatic Breast Cancer Awareness Day.

It's a good thing that there is a day specifically aimed at getting people to think about Metastatic Breast Cancer.

Because let's face it, we don't want to think about it. If we know someone who has breast cancer (and there are few out there who don't, even if they aren't aware of it), our greatest fear is that our loved one will move on to Stage IV. If we are someone who has breast cancer, or who is a breast cancer 'survivor', our greatest fear is that we might some day move on to Stage IV. If our loved one has metastatic disease, we fear and grieve for them, because we know that there is no cure and that there is a 97% chance that their cancer will kill them (painfully and cruelly)... and a 80% chance that it will do so in less than 5 years**.

And if we are in that population of folks with Stage IV Breast Cancer... well, we know we are the walking dead.

What's more, everyone else knows it, and they treat us that way. Even if they don't mean to. Some treat us with greater kindness, because they know they will not have us for long. Others avoid us, as though we were contagious. Many try to shut us up or force us to pretend that we are other than what we are, by telling us that we might not die ('they could find a cure tomorrow'), or by telling us that it's all in our attitude (by inference, we got here through bad attitude, and are dying because we are not simply turning our frowns upside-down).

Even the organizations that are supposedly on our side ignore us and cover our scariness by lumping us in under the generic label 'Breast Cancer Survivor'. Ironically, it is the very fact that we are not survivors that makes them want to pretend we are not there. We are the Monster Under The Bed; we are the future for many of them, the future they are most afraid of, the future they are most anxious to avoid. We are the reason they ingest poison and suffer radiation, in hopes of escaping the teeth and claws of the Monster.

They have good reason to be afraid. More than half of all hormone-negative breast cancer patients will experience a recurrence, and even those in the lowest risk group - hormone positive cancer patients who have received all the standard treatments - have a 42% chance of recurrence. And recurrence means a greater chance of metastasis.

We are the keepers of the Monster, and that makes us scary. But we are also You, your mother, your sister, your partner, your best friend. And that makes us Beloved, and Important, and Precious. We are well worth saving.

Yes, it's a good thing that there is a day set aside for Metastatic Breast Cancer Awareness. But I can't help but wonder why we are only given a day, rather than a week. Metastatic disease is currently incurable, and we haven't gotten very far in controlling it or treating it. The treatments available are largely toxic and often are harder on our quality of life than the disease itself, and sometimes kill us off more quickly than the cancer would. The pharmaceutical companies themselves admit that there is little solid evidence that chemo significantly prolongs the life of even those who have a good response (as measured by tumor stabilization or regression).

Yet we spend less per week on research to cure metastatic breast cancer (and thus all breast cancer) than we spend on one cup of coffee per capita during the same week. And most of the research that is being funded is funded by pharmaceutical companies whose profit, and therefore whose funded studies, are invested in current (non-curative, toxic) treatments, rather than in development of new, less toxic, and potentially curative treatments.

Wouldn't it be easier to sweep the Monster Under The Bed away by funding research for a cure for metastatic cancer, rather than by refusing to look in our direction?

Be more aware of Metastatic Breast Cancer. Spend a whole week thinking about it. And if you can, spend some money on it, too - give to organizations that are funding research that is radical and groundbreaking and potentially curative, like the Breast Cancer Research Foundation or Stand Up 2 Cancer, or give to an organization that directly helps people who are suffering with breast cancer, like many of those listed by BreakAwayFromCancer.com.

---------------------

**Keep in mind that this statistic is misleadingly optimistic. In that 'surviving' 20% are the folks who die the day, week, month after their 5-year anniversary. On the other hand, if you are lucky enough to make it that 5 years and are relatively healthy by that time, your chances go up of making it another 5 - only half of that group will die in that time.

Another Step

2010-10-12T23:29:00.001-05:00

Today my dear friend Roberta had to cede more territory to The Monster.

Today my oncologist confidently stated that some day we would have to move on to chemotherapy. He was able to do that because we all know that at some point the symptoms/pain from the tumors will be bad enough that I'll wonder whether it's worse than the chemo would feel. I'll have to balance evil against evil, with no way of knowing which is worse. We all suspect that point is coming in the not too distant future.

In the end, the result will be the same. The bumps in the road might be affected by my choices, but the destination is assured.

Some day it won't matter what choice Roberta or I make. The Monster will have eaten everything it can, and we will escape down a path that The Monster and our loved ones will not be able to follow.

Until then, Roberta and I just do as we must do - or stop doing what we can no longer do. And endure it, because refusing to endure is not among the choices offered.

*****************

Another reminder, which I will probably be repeating for the next couple weeks. It is Breast Cancer Awareness Month. Get your thermogram (or mammogram if that's your only option), do your self-check (yes, I do recommend it - I know too many women who found their cancer through self-check when their mammograms showed nothing), get your annual pap smear - or PSA test, if you are a guy. Make sure you are getting plenty of vitamin D via sunlight and/or D3, make sure you are getting enough iodine, get your hormone levels checked if you suspect they might be unbalanced.

But also - if you feel that something just isn't right with you lately, don't let yourself be put off just because initial tests don't show anything. I know it can be discouraging to deal with doctors who pooh-pooh you, but keep at it until you find the real cause of the problem. If I hadn't let myself be put off, we might have found my cancer a year earlier, and it might have been curable at that point. Trust yourself and your knowledge of your own body. Be your own fierce advocate.

You are worth it.

October Is A Good Month

2010-10-09T23:07:00.001-05:00

This bears repeating, so I'm posting it on both my blogs - but if you read both, you are only obligated to read it once!

October is my favorite month. The leaves turn colors, the weather is suitable for all things woolen, the air is crisp and so are the apples... what's not to love?

Not only that, but there is Halloween/Samhain. Not to mention my 21st wedding anniversary. And my sister Jana's and brother Joel's birthdays (happy birthday to yooooooo... love you guys!!)

From now until the first of the coming year, it's Holiday Madness - Hooray!!

AND October is Breast Cancer Awareness Month, and Non-GMO Month. Please link to information on both issues, if you aren't aware of them already. They are critical to your health and the health of those you love. Take action where you can, educate where you can, get involved where you can.

Have a wonderful autumn, everyone!!

That's What I Said...

2010-10-05T01:42:00.002-05:00

There's an excellent article on the Huffington Post website, written by Mark Hyman, MD, regarding the reliability of medical studies and the resulting supposedly 'Evidence Based Medicine'. It not only warns against trusting media reportage of health and science, but also tells you why you should do your own homework when it comes to trusting recommendations regarding prescriptions and treatments, and how you can better assess whether a particular treatment is one you want.

This information applies to everyone, whether they have cancer, diabetes, heart disease, a sinus infection, or are considering whether or not they want to take the highly marketed Seasonal Flu/H1N1 combination vaccine. So please go read it, and mark it in your Bookmarks folder for future reference.

While you are at it, read the article mentioned (and linked) therein, written by Marcia Angell, former editor-in-chief of the New England Journal of Medicine. It's a somewhat more technical explanation of the issue, and very enlightening.

There And Back Again

2010-09-30T23:45:00.002-05:00

So the other day, Scott & I decided to go to Treasure Island Casino for a nice dinner and a little bit of video poker. Nothing big, but we wanted to take advantage of their 'free stuff on your birthday month' promotion, and we like the buffet (especially on Crab Leg night).

And we did mostly have a good time, other than the little snafu with the slot machine download thingie (but in the end I won lots of money - if you count 'more than 10' as lots)... and other than the rather serious conversation we had midway through.

The thing is, last time I was at Treasure Island was when I took Bren there in May. In May I was walking around the casino, and although standing in one spot got a bit uncomfortable after an extended period, I didn't have any problems to speak of.

In less than 5 months, I went from pretty much normal to having to use a scooter just to get into the casino, much less get myself around the building. Even a cane or walker would not have done it for me. I get winded if I walk half a block down the sidewalk. It's getting to be quite a project to get up and down the stairs in front of the house. I'm not just in pain, although I am in pain - I'm getting weaker.

Five months.

The thing about cancer is that from the inside, you deal with it on a day by day basis. So it's easy to overlook just how quickly it is eating away at you. You are too busy finding ways to work around the parts The Monster has bitten off.

But the fact is, The Monster is voracious, and it eats faster and faster. So it's time to stop and really think about what that means. We need to prepare.

It feels overwhelming. On both practical and emotional terms. We can't deal with it all at once, and it's not really possible to do so. As my friend Roberta says, the very end is fairly predictable, but everyone's path to that bit of road is different. So we can't know exactly what we'll need in the future.

But the future is coming on us fast.

And we're talking about it.

That's a start.

Stupid Faces... I Mean, Stupid Numbers

2010-09-29T10:38:00.003-05:00

Every bloody time I go in to the doctor's office - most particularly the ER or the oncology office, a nurse, a doctor, or a janitor asks me what my pain level is, 1-10.

At some time in the past, they used to also show me a little chart with faces attached to each number, which is supposed to help you figure out which number you are at. "1" (or sometimes "0") is a happy face and "10" is crying.

Whether I am in pain or not, I never know how to answer this question. Secretly, I think it is a moronic question in the first place.

If I wasn't in any pain, why would I be sitting in a cold, uncomfortable waiting room for eons, talking to medical personnel, when both of us would rather be outside in the sunshine, eating butterflies or something? So "0" or "1" is already out of the question. But even if we disregard that issue...

How can this chart give any meaningful information to the medical person? I know for a fact that my idea of pain is completely different from another person's idea of pain, that my 3 might be another person's 8, so how can any useful information be gotten from this exercise?

I know this for a fact because once I went to the ER because the giant staph infection in my leg had actually dug so far down into me that it was in danger of actually eating through the bone, so the ER doc had the pleasant task of cutting out all the dead tissue and evil stuff going all the way down through my leg. He did this without anesthesia (by this I mean that he didn't give either one of us anesthesia - my guess is that the process wasn't much fun for him, either). I bit my lip hard and tried not to squeak.

In the meantime, the woman on the other side of the curtain from me was screaming loudly and without pause for breath that she was dying, and why wouldn't anyone help her, her head was going to explode. I'm pretty sure that the nurse dealing with her wished that her head would explode. Instead the Saint of Nursing just kept calmly and patiently telling the woman that she had a very mild ear infection, and the pain would probably go away when the drops took effect in a minute or two.

I think she was probably right, but the woman was too busy screaming to notice that now her ears only hurt because they were getting the full brunt of the intense decibel levels emitting from her own mouth.

My point being that I have had bad ear infections that caused me to vomit every time I moved, and I'd put that on about a 3 level for pain and maybe a 7 or 8 level of unpleasantness (because I hate nausea more than just about anything else), and this woman didn't have anything like that (because she wasn't throwing up, and if her ears hurt that bad she wouldn't have been able to scream like that). The staph infection reaming was much worse than the ear infection pain. But if asked at the time, my bet is that the screamer would have claimed a 10, and I would would have claimed a 6 or 7, tops.

An added complication is that even one's own pain is relative.

For instance, after I gave birth to my son - 36 hours hard labor, most of it on Pitocin, after an entire week of nonproductive but painful contractions every other minute, so that I hadn't slept the entire week - I had to have some X-rays done to make sure they'd gotten all the cancer out of my body two months earlier. I have tiny, rolling, collapsing veins, and the nurses couldn't get hold of any of them in order to inject the contrast dye. The fourth nurse, after fishing around in my arm for five minutes or so and seeing the black bruises blooming on both arms, burst into both apologies and tears. I was very calm and smiling, and just encouraged her to keep trying elsewhere on the arm, that it wasn't any big deal.

And really, at the time it wasn't a big deal. Not compared to the pain of childbirth, which was my yardstick at the time. My bet is that if you'd done the same thing to me ten years later, I wouldn't have been so nonchalant about the whole thing. The pain scale would have been very different.

And now, well, my pain hasn't been the same from one month to the next during this whole ordeal, but my pain scale reportage has been pretty consistent. Because I'm comparing my pain today with my pain yesterday, not with my pain last year. I have a hard time remembering what that felt like. It's been a long time since I wasn't in some pain, so for me that baseline 'normal' pain is now "1" and I go from there.

I doubt I'll ever get to 10 unless they either do major surgery on me without anesthetic, or until my life is in critical danger.

Screaming Woman would be at "10" with my baseline pain now. Because she is used to feeling No Pain, and that is what she expects out of life. Must be nice. I would have envied her, if I hadn't been wrestling so heroically against the urge to tie her in a knot and stuff her feet into her mouth to shut her the heck up.

So unless the only reason they want this information is to gauge your likelihood of erupting into hysterical screaming fits that might frighten another patient into having a heart attack, I don't really see the point of this whole 'Rate Your Pain' exercise.

On the other hand, it did inspire this. Which I think is much more practical as a real gauge. And also makes me giggle, making it doubly effective. I think they should use it in the ER.

Nothing Much Happening

2010-09-28T13:43:00.005-05:00

Beloved Son is home sick. At least, he's not taking his morning classes, although he may go to the evening Biology course, since that's only once a week and so less forgiving of the occasional No Show.

Although it smacks of locking the barn door after the horses have fled, he and his hacking lungs and clouds of attendant germs are sequestered in his bedroom, from which he only emerges in order to receive from my loving hands dishes of leftover curried chicken and corn-on-the-cob and glasses of pineapple-coconut juice, with cold meds for dessert. He's evidently been sick (but sans cough and sniffles) for two days, and during that time he was kissing my maternal cheek and washing the dishes, so it's too late now for me to avoid The Plague.

But we go through the motions, anyway. So I'm currently sitting alone in the living room, typing away whilst listening to all sorts of odd tinny noises floating from his room - obviously he is watching Japanese Anime videos on his computer in order to while away the hours. Koff, snort, hack...

Much as I love his dear sqwoonchy face, I'm probably better off with the current view, which consists of a vase of autumnal-looking flowers from the dear husband, a big bunch of beautiful pink roses from the parents, and a huge balloon - one of those silver mylar ones, this one sporting not only the words "Happy Birthday", but also a cartoon rendering of a sizeable bouquet of non-mylar balloons. Something vaguely ironic about that, but I am too distracted by the sneezing fit I hear in the other room to think about it too much.

My son may be less a classmate than a Lab Project if he attends that Biology class tonight...

La Gimpe, C'est Moi

2010-09-27T23:08:00.003-05:00

My last post was unintentionally misleading, for two reasons.

For one, by 'passing the half century mark,' I meant that I turned 51... to me, 50 is the half century mark, so passing it means getting past that age. I'm sorry if I confused you!

The other reason is that although I started out the year at age 50, in the past few months I aged from 50 to 95 in what is probably record time.

I haven't been in what you'd call prime shape for quite a while, but I used to be a pretty vigorous walker. This year I went from vigorous walker to hobbling walker, from hobbling walker to needing a cane, from needing a cane to needing a walker, and I don't expect it will be long before we start talking about wheelchairs. It's a struggle to get out of chairs, and a struggle to get in and out of bed.

And let me tell you, endocrine treatments don't do much for your reflection in the mirror, either. They suck all the juice right out of you, and suddenly your skin goes all crepe-ish and dry - one day you are respectably middle aged and the next day you look in the mirror and see your grandmother (except my grandmother had much better skin than I seem to have).

So in a way, on Friday I was passing my Century mark, as well.

I've always been precocious.

Another Year...

2010-09-24T13:16:00.004-05:00

Today I pass the Half Century mark. I celebrated by going to Physical Therapy - very exciting.

Tonight I get to go to a show at the Brave New Workshop - a family tradition, since my dad actually worked there with Dudley Riggs and Dick Guindon all those many years ago. My son was in their Teen Performance Troupe. So heck, we practically own it, right?

On Sunday my mom is having us over for a celebratory Bouja supper. No, this is not the Bouja you are familiar with - we think that perhaps 'bouja' is Czech for 'stew' or something equally generic. This is a very unique thing, and it is Heaven. Along with the Czech potato dumplings (potato-sized, cannonball-weight), totally worth the gluten-induced pain the next day. I'll be half-good and have cheesecake instead of our traditional homemade birthday cake.

I promise to be good next week, but if you can't be a little bad on your birthday, when can you be bad?

I made it another year. Yay, me!

Reporting In

2010-09-23T22:52:00.006-05:00

Well, I suppose that I should write an update on the whole cancer thing.

I did convince Dr. B to let me try Ibandronate rather than the 'gold standard' Zometa. Ibandronate has been around for a while in Europe, but has only been recently approved here for osteoporosis (as Boniva), and is not yet widely used for bone metastases in the U.S. However, it turned out that a partner of his in a different office was using it with one of her patients, so he allowed himself to be convinced.

The reason I wanted the Ibandronate is because in the studies done in Europe, Ibandronate has fewer initial side effects and much less renal toxicity than the other bisphosphonates, but performed similarly to Zometa. It has less of a long-term track record, so although it seems as though it may lead to less jaw necrosis than some of the others, there is no way to know this for certain as of yet.

But between my rather dicey kidneys and my tendency towards getting the nastier side effects, it seemed to me that Ibandronate would be a reasonable choice over the Zometa.

Unfortunately Dr. B did not leave instructions for the infusion center, and both he and his assistant were out on the day I was scheduled for the treatment. The other doctor available, unfamiliar with the drug, would only allow me to have the 'standard dose' - the one given for osteoporosis. No amount of argument would convince them otherwise. I spent the next day trying to get hold of either Dr. B or his assistant... and then had to come back in the next day for the other half of the dose.

Unfortunately, the drug was sent in the form given to osteoporosis patients, which was in an 'IV Push' rather than an IV Drip. Which means the drug was undiluted when the nurse pushed it into what she thought was a vein. But she actually pushed it into the tissue of my forearm.

So the next day I woke up with inflamed skin and a hard, painful egg-sized lump in my arm. The inflammation and swelling continued to grow, and the pain continued to increase, so I ended up in the ER on Sunday night, fearful that I might have an infection. After a few hours, during which many people came in to look at my arm but nobody had a clue what to do about it, they sent me home with orders to take Benadryl (which did nothing) and ibuprofen alternately with acetaminophen (which did very little).

I went in to see Dr. B the next day. They were more familiar with the problem (basically it is as though they pushed salt into my tissue and caused a nasty sort of internal burn, which is exactly what it feels like), but unfortunately there still was nothing that can be done. I simply have to endure it until it goes down on its own. Because of the extent of the damage - what everyone at the clinic called 'impressive' - they are predicting that will be sometime in the next 7 weeks or so.

Next time it will be an IV Drip. And hopefully at the right dosage.

For those of you who might be lucky enough to have the rare oncologist who is more open to newer treatments than my own: another advantage of ibandronate over the other bisphosphonates, due to the lack of renal toxicity, is that there have been two studies in which patients were given 'loading doses' of ibandronate, in order to get their blood levels up to the effective levels within a week, instead of the usual 12 weeks. This meant that their bone pain was relieved within a few days, instead of a few months. If I had the chance, I would take this option. More information about these studies can be found here - print it up and take it to your doctor.

Unspoken Acknowledgment

2010-09-18T18:07:00.006-05:00

This week Scott dug up an old organizer of mine.

For decades now, I've always had some form of organizer that I keep with me all the time - it's how I keep track of the bills, of chores that must be done, of phone numbers that are important, of appointments, of dates that must be remembered. In it I also keep my lists and notes: grocery lists, To Do lists, recipes, knitting patterns, driving directions, things I learned while researching at the library or bookstore or a class. All of our financial responsibilities and information, birthdays, the phone numbers and addresses of all our friends and family, all in The Book.

I can't keep it all in my head, so in The Book it goes.

Scott used to make fun of The Book, when he wasn't exasperated by it. I don't know how many times he's stood at the door, fidgeting impatiently and rolling his eyes, while I rummaged through the house snarling, "It's important! We can't leave until I have That Book!!" Or worse, how many times he had to turn the car around and backtrack - sometimes for many miles - after hearing me gasp, "Oh, no!! I can't find my book, I must have left it back at X**. We have to go back - I can't do anything without The Book!!"

And I was right. The Book held all the information we needed to keep our little family going. Our finances, our chores, our friends and family, all our important information was in that book. The book has been, in a very real sense, the solid representation of my function in the family.

My organizer has gotten smaller over the years, as many of the functions of The Book gradually were taken over by The Computer. But still I have a little Book that I carry everywhere, a backup that mostly now just keeps track of doctor appointments, and the phone numbers of my emergency contacts.

On Wednesday, Scott asked if he could have my old organizer.

Today he wrote down the grocery list in his Book, and the names of the movies at the local Redbox that we thought we might want to see. Half an hour later, someone called to let me know that he had left his Book on the Redbox machine. When he got home, he had managed to acquire all the requested items (a first!) and I teased him a bit about having to backtrack in order to get The Book.

We laughed. But in the quiet spaces between, we know what it means. Now Scott gets the groceries. Now Scott is making payment arrangements. Now Scott is scheduling dates for family get-togethers. Now Scott jots down recipes.

He can't keep it all in his head, so in The Book it goes...

**Seriously? You don't know what 'X' stands for? What are you doing down here, reading this?

From Mothers, For Daughters

2010-09-13T22:31:00.001-05:00

This is a hard one to put online, because it is very personal to my mom and to me. And yet I think it probably expresses a pretty universal feeling that a mother has when her child is seriously ill, and I suspect that some of my readers have been or are in one of those two roles now - or sadly, may be there in the future. Not everyone can express themselves as my mom does here, so this is for all mothers, everywhere, from the heart.

I love you, too, Mom.

----------------------

I remember you standing in front of the ostrich cage,
Pretty in the little red and white blouse I’d embroidered for you,
Holding up your reddened finger, your eyes full of tears.
“He must have been hungry”, you said.
We hugged you and told you it would be all right
and the ostrich must have liked you.

I remember the sound of your small feet pattering up the apartment stair,
running to find me, calling down the long hall.
You came weeping and holding your poor bloodied elbow.
“I fell down Momma – it hurts!”, you said.
I patted your blond head, put a bandage on the wound and said
“There, there, it will be all right.”

Now you walk toward me, my dearest daughter, my best friend.
I see the pain in every step, the effort it costs you to move.
The terrible disease inside you is hungry. It hurts.
I want so much to use the magic cure (it’s always worked before).
Now why can’t I say “Here my love - it will be all right –
I’ll just kiss it and make it all better”?

Barbara Maloney
2010

Another Country Heard From

2010-09-11T19:08:00.002-05:00

From Dec. 15, 2003 PubMed: Institute of Ultrasonic Engineering in Medicine, and Clinical Center for Tumor Therapy of 2nd Hospital, Chongqing University of Medical Sciences, Box 153, 1 Medical College Road, Chongqing 400016, China. mfengwu@yahoo.com

High-intensity focused ultrasound (HIFU) is a noninvasive treatment that induces complete coagulative necrosis of a tumour at depth through the intact skin. This study was to explore the possibility of using HIFU for the treatment of patients with localised breast cancer in a controlled clinical trial. A total of 48 women with biopsy-proven breast cancer (T(1-2), N(0-2), M0) were randomised to the control group in which modified radical mastectomy was performed, and the HIFU group in which an extracorporeal HIFU ablation of breast cancer was followed by modified radical mastectomy. Short-term follow-up, pathologic and immunohistochemical stains were performed to assess the therapeutic effects on tumour and complications of HIFU. The results showed that no severe side effect was observed in the HIFU-treated patients. Pathologic findings revealed that HIFU-treated tumour cells underwent complete coagulative necrosis, and tumour vascular vessels were severely damaged. Immunohistochemical staining showed that no expression of PCNA, MMP-9, and CD44v6 was detected within the treated tumour cells in the HIFU group, indicating that the treated tumour cells lost the abilities of proliferation, invasion, and metastasis. It is concluded that, as a noninvasive therapy, HIFU could be effective, safe, and feasible in the extracorporeal treatment of localised breast cancer.

Read The Abstract

Looking Great

2010-09-07T18:13:00.002-05:00

Two pieces of potentially useful information:

"You look great!!"

I know that this is intended as a supportive statement, but please don't say this to a person with a life threatening or serious chronic illness, unless you know that how they look is something they - as an individual - particularly care about.

Now, if they just got a new outfit, or a new wig, then fine, compliment them on the new fashion attire.

But generally speaking, a person who is currently in great pain, or struggling with nausea, or looking at their last few months of life... that person is unlikely to get too excited about how he or she looks. Unless they are concerned about their looks for specific reasons, or unless you know them to be a person who is consistently very concerned with appearance, the seriously ill person is likely to interpret your statement as a denial of their illness. It can seem to them that you either don't want to believe that they are truly ill, or that you want to keep them from talking about or showing any signs of illness while you are with them.

Neither interpretation reflects well on you, and it puts the ill person on the spot, forcing them to come up with a tactful reply and to try to conform to your needs without really knowing what those needs are. People who are seriously ill have enough on their minds without having to deal with that sort of thing. Do them (and yourself) a favor, and instead either compliment them on a specific thing - the color of the new outfit, the attractiveness of the new haircut, the cut of the new outfit, the color of the new hair - or present a different subject of conversation. You'll be doing everyone a favor.

That said, the second bit of information is about looking good.

Most forms of chemo treatment affect your hair. There are also non-chemo drug treatments that thin your hair or cause it to fall out in patches (as well as causing very unpleasant scalp/skin conditions, but that's a different story). It's all, as they say, No Fun.

There are stores and websites at which you can buy various types of hats and wigs and other types of head coverings. The American Cancer Society, for instance, has an online store and catalog that has very reasonably priced options. But today I want to bring to your attention two particular online sites.

One is heavenlyhats.com, a charitable organization started by a thoughtful young man inspired by the plight of pediatric cancer patients in a local hospital. This organization will send out free hats to cancer patients and folks with other medical conditions that affect hair growth - Male Pattern Baldness does not qualify, sorry. If you need hats, go apply. If you don't need hats, but you'd like to donate to a good cause, go there and give.

The other is France Luxe, a website store that sells a wide variety of hair adornments - barrettes, headbands, scarves, turbans, jeweled hair sticks, etc. The lovely CEO of France Luxe, along with her employees, will send cancer patients one free silk or cotton headwrap of their choice. All you have to do is go to the website, click on the little 'Good Wishes' icon at the top of the home page, and you will find the application. This is a very generous thing for them to do - so if you have a wedding or prom coming up, or if you are hankering for something pretty for your hair, please check them out and see if you can support them by buying something nice for yourself. If you go here and buy products from this page, 20% of your purchase will go to the Triple Negative Breast Cancer Foundation. Other than chemo, there are currently few treatment options for those with triple negative cancer. Anything developed that would cure or control triple negative cancer will also cure or control the other sorts, too, so it's a good cause for all.

An Idea Whose Time Has Come

2010-09-06T21:37:00.003-05:00

So we were going through our stuff, and came across the drainage pads that I got after my bilateral mastectomy, for the lymphedema in my chest. These are basically two quilted pads that are sewn specially in a way that channels the fluid under your skin downwards so that it can drain correctly instead of pooling and turning your chest into a painful and weird human waterbed arrangement.

These suckers are not cheap - they are at least $80 per pad, and I had to have both the Left and the Right. They are in excellent like-new condition, as I only needed them for about six weeks.

I have breast prosthetics, they are very nice; I've used them twice in half a year, and am unlikely to use them more than that again in the next six months - and that probably won't add up to very many wearings before I won't need them at all. They will be pretty much like new at that point.

I have a scooter. Eventually, for one reason or another, I'm not going to have use for it.

I'm getting a wheelchair lift. Eventually, for one reason or another, I'm not going to have use for it.

My husband and I have side-by-side hospital-style adjustable beds that held together make a king bed, and eventually he won't need that any more and may want a regular bed again.

Let's face it. Most of us who have cancer, and most especially those of us who have Stage IV cancer, end up buying things we need because of our illness - and then eventually we stop using these things, often long before they have become too worn to be useful. Many of these things cost hundreds, sometimes thousands of dollars.

And yes, I could sell some of them for a bit, and the person who got a deal will be happy - but the small reimbursement won't be anything near what I put into these things, and won't make a dent in the debt we incurred in getting them.

I would find it MUCH more satisfying to be able to lend them out to other women who are going through the same struggle - women who can't afford a scooter, or a wheelchair lift, or a nice wig, or a good walker, or prosthetics. Perhaps (since this is currently only a dream) a wheelchair van or two. The only rule would be that you have to check in with the item once a month, take reasonably good care of it, bring it back when you are done with it so that someone else can benefit... and hopefully donate whatever you do buy when you are done with that, too.

Yes, this is my dream. And my husband's, too - he thinks it's a wonderful idea.

The only problem is that we live in a tiny house that doesn't have room for the stuff we already have, much less have room for an Cancer Equipment Lending Library.

But if there were someone else in the Twin Cities who happened to have a garage or other accessible storage space who would be willing to house such a thing, please let me know. We'd be happy to help organize and work at such a thing - think of what a blessing it would be to so many people!

... And Mostly The Ugly

2010-09-03T17:06:00.003-05:00

Dr. Bouncy rather anxious to put a positive spin on things. Which is not easy to do.

The hip tumors may, as he points out, have a very slightly lower SUV. SUV is a measure of how bright a tumor looks on the PET scan; the brighter the tumor is, the more active the cancer cells are in replicating.

I don't necessarily see it, but that is what he says. On the other hand, they are very noticeably larger than they were in early July. Which is not good.

Even worse, there are two new tumors. One in my spine, a vertebra right between my shoulder blades. It looks pretty big already. The other is in my collar bone, near my shoulder. Also not tiny.

Dr. B, desperately chipper, "But at least it hasn't moved into your liver or your lungs. That's good, isn't it?"

I suspect he doesn't want me to be mad that he pushed me into the radiation, when mostly what it did was make my hips more brittle and made me go off my meds and supplements, which may have been slowing the spread of metastases. These showed up awfully fast, and are growing very aggressively.

So. Not good news.

And of course, the next steps are to push me into more drastic meds, with worse side effects, and no more likelihood of working any better than the other meds or the radiation.

But I don't have a lot of options available to me. I can't afford to go to Europe or Mexico, and although they have some options that are not available here - options slightly more effective in some cases and considerably less toxic - in the end, there is no getting away from the fact that this is a very aggressive cancer, and I am not very responsive to drug therapy. Or radiation therapy, evidently. I have to either go with what I'm allowed and hope for a miracle**, or just sit back and wait as the monster eats me.

So. We're going back to the basic endocrine drug, Tamoxifen, which I preferred not to take before the aromatase inhibitors, because the AI's have a slightly better effectiveness on average, and the potential side effects of the Tamoxifen are nastier (depression/mood swings, blood clots and stroke, for instance). But different people react differently to the different drugs - Tamoxifen works on a different basis than the AI's, and strengthens bone, so it's possible that I'll respond better to it. I asked him about doing this before the radiation, and at that time he was unwilling to try it, but evidently he's recently gone to a conference where some researchers claimed that Tamoxifen seems to work better for women with higher body mass indexes (that would be me). So we'll try that.

Plus we're going to try - at least for a little while - the bisphosphonates. Also not something I'm looking forward to, but I did talk to him about one that is well established in the EU but not used much here yet as an IV treatment: ibandronate (Boniva, which orally is now being used for osteoporosis in the US - at a much lower dose, of course). The studies are showing that it has similar effectiveness to Zometa, the 'standard of care' here (if you can afford it), but with a lower side effect profile. Dr. B hadn't heard of an IV version for breast cancer, but he checked it out, and look! I was right! Plus it turns out an outlying clinic of theirs has a doctor who is using it on certain patients. So Dr. B is checking things out, and if it all works reasonably, that's what I'll be taking.

I also asked about prescribing me Iscador (mistletoe) as a supportive measure, but he nixed that. He is purely a standards-of-care guy. But he said he wouldn't tell my other doctor not to prescribe it. So we'll see if I can push Dr. P into it... although it took a year to get the Low Dose Naltrexone, and at this point Dr. P is completely against DCA (he doesn't like the side effects, although they are similar to, but both milder and less permanent, than the side effects of chemo).

I wonder if I have another year to convince Dr. P about the Iscador?

**Ha!

Clock Ticking...

2010-09-03T01:25:00.003-05:00

So. Dr. Bouncy has not called to give me the results of the scan. Traditionally, he has called me before our followup appointment when the news is bad, so this could be good news.

Or, conversely, the news could be so devastating that he feels obligated to tell me in person.

Or maybe he forgot.

So.

Followup appointment in 8.5 hours.

Labs drawn at 10:30. The nurse at the scan on Monday told me my veins are starting to scar up, getting hard to get into - this is bad, since they have always been tiny, rolling, collapsing veins. They've always had to use the 'baby needles' to get in, and they usually leave bruises from all the fishing around they do with the needle. I've never been able to donate blood, they need to use needles too large to get into my veins. I really don't want to have to get a port just so they can take the stupid vial of blood... I'm so likely to become allergic to the stupid thing, among other issues.

They will, as always, weigh me. I may regret all that State Fair food.

Dr. Bouncy at 11:00.

So.

So.

Sad News

2010-09-02T10:48:00.002-05:00

My dear friend Timary's husband and beloved, Martin, has passed away. His time of struggling with this monster was either mercifully short or brutally swift, depending on your perspective. Six weeks does not seem enough time to deal with the emotional and practical aspects involved in losing a devoted husband, a loving father, a gentle friend.

I know you will join me in loving thoughts and prayers for my friend and her young son in this difficult time. Thank you for being there, dear readers...

Oops...

2010-08-29T11:37:00.003-05:00

My goodness, I hadn't realized it was so long since I'd written a post. Time is certainly flying by!

Nothing too important has been happening, which is why it didn't occur to me that I should 'report in'. But I've been very busy, nonetheless:

~ I've been going to Physical Therapy. It hasn't helped with the pain on an ongoing basis, but on the day of the therapy I get some pain relief, and hopefully it is strengthening the supporting muscles a bit. That's important, since even a relatively minor fall or bump to the hip could have very serious consequences. We're hoping to get me strong enough that I could perhaps use the regular machines at the local Y.

~ I've been getting Qi Gong healing sessions with a truly lovely woman - I'll talk about her more in a later post, as she is starting up a wonderful program for cancer patients and their caregivers over at Woodwinds. She is hoping to start it up in October, and it will be free of charge.

~ Realizing that my time of mobility is very limited, and that already I can only walk a very short distance, we shopped around and found a used scooter for a very reasonable price. Of course, now I need a way to cart the scooter (and future wheelchair) around...

~ So we are shopping for a reliable used minivan. We have narrowed the field to the Mazda MPV, the Toyota Sienna, and the Dodge Caravan (not the Grand, but the smaller one). The Honda Odyssey and the Plymouth Voyager would be on the list, but they are out of our price range. It's not proving easy to find one in our budget that is well kept and not too heavy on the miles, so let me know if you are aware of someone in the Twin Cities/Hudson area who is about to put one on the market.

~ The wonderful son started his college year this week, and there's been a lot of stuff necessary to get to that point, so that kept us busy in-between the shopping and therapeutic adventures.

All of which has kept me somewhat distracted from fretting about the upcoming scan. That happens very early tomorrow (Monday) morning. I expect I'll hear from my doctor on Wednesday or so if the news is bad, which I rather expect it will be. He doesn't like to give that sort of news in person. That will leave plenty of time during our appointment on Friday for him to push at me about chemo. Wheeeeee...

So that's all the news that's fit to print. I do have a few things of more general interest to say, but I'll save that for another post.

If you are inclined towards prayer, please put in a word for my dear friend Timary, whose husband was recently diagnosed with what has turned out to be very aggressive renal cell carcinoma. He is not doing well, and is going straight to hospice care from the hospital where he had surgery. Timary has been a great blessing in my life the last few years; she is a talented designer and a very beautiful spirit. She and her family need and deserve all the love and support they can get.

Drat

2010-08-11T20:49:00.005-05:00

Well, the new doctor was pretty much no help at all. So I'm still adrift at sea, with no clear direction.

I'm on my own.

Thank goodness I'm only alone in terms of trying to figure out what to do next. I am most definitely NOT alone when it comes to a truly fantastic support system.

So I want to take this moment to thank my sweetheart of a mom, my staunch supporter of a dad, my sweetest-of-all-husbands, my beautiful and talented son, my darling sister and fabulous in-laws, my kind and loving friends and my many new acquaintances. You are all more than I could have ever imagined, I am unspeakably grateful to have you in my life.

If there were a thousand of me, I'd give you all a standing ovation.

On th'Aromasin...

2010-08-07T00:30:00.003-05:00

Well, Dr. Bouncy says another 3-4 weeks until the next PET/CT scan, and clearly the Faslodex is not a good option, so I'm back on the Aromasin for the time being. I told him that I was considering the possibility of taking the Zometa for a couple months, long enough to support a bit of bone growth/scarring after the radiation, if that seems to have shrunk the tumors sufficiently.

I don't think he thinks the Aromasin is going to do any good (he may be right, for all I know), but it's fairly clear he thinks that when I see progression on the scan I'll be scared into chemo, so he thinks I might as well just coast for the month.

I'm expecting some progression, since I will also have been off of the supplements that I think have been helpful for two months (they act against the radiation) and because the allergic reaction to the Faslodex will have 1) caused cancer-feeding inflammation systemically and 2) worked against the LDN. My liver started griping me about 2-3 weeks after stopping the ALA, and the chest lump seems to be fluctuating again, among other things.

So unless the progression is extreme, I don't think it will panic me into anything I'm not already prepared to do. I'm inclined to wait on certain decisions until after I see this new doctor, see whether he can suggest a few new options... the real chemo decision may wait until the scan after this next one.

We'll see. I'm going to have to take this a little bit at a time.

We'll see how things go.

Glowing, But Slowly Fading

2010-08-04T23:10:00.003-05:00

Last Friday was my last radiation treatment.

Today I had (drum roll, wait for it) a salad!!! Oh, the joy, the pure sumptuous pleasure of a vegetable, a bit of fruit...

I may suffer for it, of course, but I don't care. It was delicious, and it was nice to enjoy something for a little bit.

I also had a day and a half of increased energy and less pain, thanks to a very kind lady who came over and did a Qi Gong healing session with me. She certainly was a lovely spirit - thank you, Bonnie!

What this helped me realize is that it's not necessarily the tumor that is really debilitating me at the moment. I'm still suffering from some pain there, but I'm suffering more from referred pain, from sciatic pain (caused, no doubt, by my change in gait and my getting less exercise and spending more time sitting on those nerves), and from pain caused by the Faslodex. I see the Physical Therapist on Friday, maybe she will have some ideas on what I can do to at least deal with the sciatic pain.

I am not having a good time with the Faslodex. I know I'm not going to be happy with any of my options, however. I'm not certain what I will do. I will be seeing Dr. Bouncy tomorrow, we'll see what he says (as though I don't already know). I will also be seeing a new doctor next week - one more inclined towards non-mainstream treatments. I'll know more after seeing the next PET/CT scan in the next couple weeks, and hopefully all of that will help me make a decision.

And that's where we are. The radiation theoretically will keep working away inside for another two weeks or so, and so we just have to wait until then to see whether it did much good or not. Wish me luck...

Dammit

2010-07-30T00:46:00.004-05:00

I have a friend who has pancreatic cancer. She has a loving husband and three extremely charming adolescent daughters. She is a dear, kind, generous, fierce and feisty woman. She has seen much of the world, but not nearly as much as we would like her to. The world needs her honesty and her fiery spirit and her laughter and her sweetness. Her family needs her even more.

Another young friend recently found out that her husband has metastatic renal cell carcinoma. They have a young son who has special needs. This is a man who is loved and needed. He is not a throw away, he is not superfluous, he is not unnecessary, he is not faceless and anonymous. He is not a place holder on this earth, just waiting for someone else to fill the space. He is unique, both to his family and to the world.

Another friend recently lost a treasured companion to cancer, a young man who had not even gotten to his forties yet.

My cousin was diagnosed with thyroid cancer at the same time that I was diagnosed with breast cancer. I had bladder cancer in my 20's, even though I had none of the risk factors for it. My dad and uncle have had cancer in the last decade or so. My sister-in-law's husband had throat cancer half a year before my breast cancer diagnosis, several of my friends have had cancers of various sorts before and since that time. My parents have had several friends die of cancer in the last decade, others among their friends had children who died of cancer, and at the moment a friend of my mom's has metastatic lung cancer.

One of my fellow patients during this past three weeks is a girl in pigtails who tightly clutches her stuffed giraffe to her chest as she follows the nurse. She gets a colorful sticker at the end of each radiation treatment. Children have to be bribed at that age, in order to get them to lay still for so long.

Most of these people have little or no family history of cancer, many don't have any of the 'typical' risk factors for cancer (no smoking or drugs, low-to-moderate alcohol consumption, low consumption of junk food, etc).

One keeps hearing about the war on cancer, how we are winning it... but most cancers have had little improvement in treatment outcome in the last 30 years or more, and the incidence rates for most cancers have been on a rising trend over that time*.

And new treatments are being researched, studied, and/or approved at a slower and lower rate every year, so there seems to be little likelihood of our even fighting to a stalemate in this particular war. Not while the status continues to be quo within our current health care system - and make no mistake, the recent changes in the system do absolutely nothing to change that. In fact, it strengthens the 'standards of care' stranglehold that Big Pharma (and its weak rubber-stamping agency, the FDA) and Big Insurance have on us and our (currently barbaric) treatment options. It encourages the lack of, even the repression of innovative research and development.

And that's just research on potential cures. Research into the possible causes of this plague (these plagues?) is nearly non-existent. The interests of business and the economy (as important a subject as that is) trump the interests of our children every time.

Why is this acceptable? Why aren't we questioning our health care providers? Why aren't we yelling in the streets about this? Why aren't we insisting on better for our children and our parents and ourselves?

Are the lives damaged and lost really all that insignificant and expendable?

How expendable are you?

*According to American Cancer Institute report on SEER statistics, there are a few cancers that have stayed stable or lowered somewhat, but most have been on the rise to one degree or another. I was expecting a significant lowering of such cancers as lung cancer, due to a lower number of smokers - but no, lung cancer rates have been rising pretty steadily and strongly over the last few decades. Odd, and not a little dismaying.

And I Thought My Bank Balance Was Scary...

2010-07-27T23:05:00.002-05:00

So most of us now know that the plastic linings in the cans of food we grew up with, the plastic baby bottles many of us used, those foam containers our Big Macs used to come in, and the cling wrap we wrapped our food in before bringing it to school... they and many other everyday plastic products we used were full of BPA (Bisphenol A), a chemical that among other things produces a synthetic estrogen that leaves us at higher risk for prostate and breast cancer, etc.

Many of us got concerned about that, and some of us have been looking out for that for the last few years, making changes to our grocery habits in order to avoid feeding the awful stuff to our kids and ourselves.

Now it turns out* that those carbonless receipts we've been getting at the grocery store, the Post Office, our ATM's, etc, can contain 1,000 times or more the amount of BPA as one of those can liners. And the BPA can rub off on anything the receipts touch. So when we throw our receipt into our grocery bag - or worse, into our purse - the chemicals rub off onto everything the receipt touches. And from there it gets on our hands and on our food, where it can be ingested or absorbed through our skin.

Oh, good, another thing to worry about...

*you can find reports by Googling 'BPA, receipts', or link here to just one of the many reports out there.

Glowing, Day 14

2010-07-25T10:07:00.002-05:00

This is a fairly detailed account of my experience on Week Two of high dose radiation treatment. The likelihood is that most folks will find it boring, and they can skip right down to the italics at the bottom, which is a moderately humorous rant on Not Eating.

The rest of this is for folks who are either caring for someone who might end up having radiation treatment, or for folks who are contemplating getting radiation treatment (specifically to the abdominal area). And for folks who for some reason have a desire to read about someone else's boring medical symptoms. We don't mind whining about our own symptoms, but other people's boring symptoms tend to induce the dreaded Eye Glaze Syndrome.

Having published the well intentioned warning, let us proceed.

I've decided to count the 'days off' in my accounting, because radiation keeps working for a while after you stop doing it. According to my oncology counselor, it keeps working for about twice as long as the treatment regimen - I'm taking radiation treatment for three weeks, and that means it will keep working on my tumors (if it is working at all) for six weeks altogether. I assume it will keep working on my internal organs for that long, as well, which is less pleasant, but there we are.

I know that this is true at least in part because during my friend from New York's visit, my husband went to bed before I did. This meant that he did not apply 'Special Skin Care Cream' to my hips and backside, and the burny thing has gotten worse during this period. Oops.

I will miss my friend, now that she has returned to NYC, but it may be a good thing for me that she did so relatively quickly. I'm back to the skin care routine, and I'm sure my dermis is grateful.

Other than the burn thing, and the fact that my hip pain has gotten worse rather than better over the past couple weeks - causing my blood pressure to remain elevated - the major side effects during radiation treatment seem to be related to my digestive system.

This mainly involves transient nausea (urgh), and... ummm... intestinal upset and discomfort.

Cancer treatment is not for the squeamish. A lot of the side effects of treatment involve more awareness of and dealings with various bodily fluids and semi-solids than the normal person generally cares to experience.

So far the nausea medications we've tried have either been completely ineffective, or they have actually made the nausea worse and added dizziness and headaches to the mix.

The diarrhea medications worsen the nausea and swing the problem over to the exact opposite end of spectrum, which may possibly be worse than the original situation. On one hand, it's easier on the backside and the general bathroom atmosphere; on the other hand, even very moderate straining is hard on the tumor pain issue, and I end up feeling as though I have swallowed an entire yard bag full of clay.

It turns out that I would not enjoy ingesting an entire yard bag full of clay. Who knew?

It also turns out that I've learned a lot more about what I would and would not enjoy ingesting, because the other thing you need to do when your intestines are being irradiated is eat... well, it turns out there isn't an awful lot you can eat, actually. Especially if you have other conditions that already limit your diet.

For my other issues, I had to eliminate grains (yes, all of them, including corn and corn products - try that for a while), and nightshades (potatoes, tomatoes, sweet and spicy peppers of all sorts, eggplant), and I was supposed to raise my intake of healthy fats. For me, this involved a lot of salads, mostly salads that included meat and a good amount of dressing. I happen to actually like salads, especially in the summer, so this diet isn't as difficult as one might think. Once you get used to it.

I did hit Rebellion Stage when my doctor suggested that I should cut out the dairy. It turns out that life without yogurt and cheese is not something I can face like an adult. Not with the above limitations, at least.

For this situation, I can't eat anything with fiber (including veg with skin or seeds, fresh veg or fruit, leafy veg, nuts, or seeds). And I'm supposed to avoid fats, even the healthy ones. Which also eliminates frying and sauteing and nearly all saucing.

Which pretty much leaves me with chicken broth and skinless chicken breasts (no onions, garlic and shallots probably also banned if I were to actually specifically look the information up), and baked skinless sweet potatoes with apple sauce (because butter is a no-no). And tapioca pudding, if made with sugar rather than high fructose corn syrup.

Under no circumstances should I have anything even vaguely resembling a salad.

Of course, then the skin and energy issues become a problem, because I'm not getting the fats I need to digest and function properly. And of course, the fat restriction thing also means restricting dairy.

I mentioned Rebellion Stage, didn't I?

So I am compromising. I'm eliminating (temporarily) the veg and MOST of the fruit. Watermelon is the only thing that I find helps with the nausea, so I am eating a moderate amount of that on days where the nausea is really getting to me. And I'm drinking a little cherry or lemon juice in my water when I'm just dying for a bit of bright flavor. I'm eating meat, eggs, and/or soup (no veg, unless skinless & seedless and highly pureed) for pretty much all my meals, accompanied at dinner by baked sweet potato (no skin).

That far, I am willing to go. But I'm eating whatever meat I want, and if it has fat, well that's just tough. And I'm having dairy. I am also cheating a bit and allowing myself sauces and mashed potatoes or hashed browns when we go to a restaurant with friends. Because otherwise I'm pretty much limited to meat or plain eggs without any side at all. Otherwise I know from experience that I will just chuck the whole thing and either eat whatever the heck I want, or I will pretty much refuse to eat at all**.

Even with that, things are pretty boring in the eating department, what with the limitations on the butter, olive oil, sauces, etc. I like veg, I really miss them. When your independence and mobility are limited, and your activities are largely curtailed, meals end up comprising a depressingly large section in your list of Things That Make Today Different From Yesterday.

Other than the above, things are going okay. I'm easily fatigued, but not too extremely - I attribute this to the LDN*, and I am grateful. The radiation burns aren't too bad, which is a surprise, given my thin oversensitive Irish skin. I attribute this to the skill of my radiologist and the care of my skincream-wielding husband, and again I am grateful. The medications are, as usual, not working well and causing bad side effects - not surprising, and for this I am resoundingly ungrateful, but resigned.

And that, as they say, is that. For now.

*Low Dose Naltrexone

**Looking at me, you'd think the 'eat everything' option would be my preference, but past experience is that my first reaction is to go on hunger strike. For some reason this is easier on my rather faulty Decision Making faculties, being a more passive approach. It also works well with my particular digestive system, which doesn't trip the Hunger Switch on any particular day until I've actually eaten something.

You would think this situation would lead to a tendency to lose weight, but evidently I am a walking example of the physics Law of Energy Conservation. My body is enthusiastically Green - I recycle the same single calorie hundreds, perhaps thousands of times. The government should study me in their attempts to design a system that accomplishes both ecological and fuel conservation.

Granted, you'd have to take your car and heating system to the doctor fairly frequently, and that would stress the health care system. But that's a burden that we'll just have to take on. There's no such thing as a free lunch. But since we've already established that lunches aren't absolutely necessary to this particular paradigm, we can probably get around that.

Glowing, Day... umm, Either 7 or 9, Depending

2010-07-21T01:42:00.003-05:00

So this was my seventh day of radiation, if you count only the treatment days, or Day 9 if you count the weekends (I don't get treatments on weekends).

My bone pain is getting worse instead of better, which they were not expecting.

I'm having nausea and intestinal problems, which they were not expecting. Theoretically the radiation is designed to be within tolerance levels for the intestines. They've never had someone with tumors in that spot have those problems before.

I'm having weird (visible) muscle tics during the actual radiation process, which is just plain bizarre, they've never even heard of that happening before. It doesn't hurt, it just is very, very strange.

I have a giant rash on my arm, which is a mystery... except that maybe I'm allergic to the Faslodex (the once-a-month injection they are giving me for the cancer, the last of the endocrine therapy options). I'm having a lot of problems from the Faslodex, actually - the rashes, the headaches, probably the nausea and possibly the intestinal problems, sore throat, cough, weakness, depression, joint pain, a worsening of allergy issues. And oh, yeah, the return of Depression, my favorite. As usual, everyone keeps telling me that they've never had a patient who has had these problems with the medication before.

Dr. Bouncy, very stern, informs me that the cancer is very aggressive (really? hadn't noticed) and he wants me to start chemo as soon as the radiation treatment is over. The Faslodex can take up to 6 months to get to therapeutic levels in the body, and without specifically saying so, the gist is that he doesn't feel that I have 6 months to Wait And See.

He uses emotional blackmail to push the chemo option, waving impending death and my son at me (gee, I hadn't thought of that...), in hopes that this will bring me to see reason.

Because, you know, the other medications** are working so much as he expected that OF COURSE I should trust that somehow the chemo will work as he wishes it would. Even though the chemo treatments generally don't work as well or extend your life as the endocrine therapies can, and have so many more potentially horrific side effects.

It's not that he doesn't care. He does, clearly. But he's a straight standards-of-care guy, so once the endocrine options are over with, chemo is all he's got left to offer. And he's an optimist by nature, so he's hoping for a miracle of sorts - not the sort of miracle where I'm cured, but the sort of miracle by which I eke out another year or two, which he'd count as a success, as it would get me to the top end of the 'average' lifespan for someone diagnosed with Stage IV BC.

He thinks in terms of the average patient, or even in terms of the average unlucky/sensitive patient, in spite of my body's baffling refusal to react like one up to this point. That's not his fault - he hasn't been living with my body for the last 50 years, like I have. I'm disappointed, I'm upset, I'm scared... but I'm not the least bit surprised. This is all pretty much par for the course.

I plan to hold out until the scan after the radiation theoretically will have pretty much done whatever it's going to do - about two weeks after the last treatment, I think. The scan and how I feel will give me a bit more information to work with, and then I'll have some very tough decisions to make. Again. I have few possible paths, and all of them lead into dark, blind alleys... no way to know how long any of them might be, or what might lurk within.

Except that somewhere in all of them, inevitably, There Be Monsters.

**Like the Aromatase Inhibitors that should have been relatively symptom-free and should have given me a couple years progression-free (instead of a couple months), and the Faslodex (which all their other patients have had no problems with)...

Glowing, Day 2

2010-07-13T22:37:00.003-05:00

Just a quick update:

Radiation is interesting. They do multiple x-rays every day while you lay on the hard slab (in my case, with my pants pulled down around my thighs - this is not an exercise that leaves you with your dignity intact), in order to make minute changes to your position so that they can target you as accurately as possible. Then a big disk full of various gadgets circles around you, making noises and vibrating, stopping here and there. Sometimes as one gadget or another swoops around and stops to hover above you, it sort of seems like they are peering at you quizzically - one alien being puzzling over another.

In my case, as the radiation hits me on one part or another, my muscles twitch involuntarily. It feels like someone plucking at my clothing, if there was clothing there. It doesn't hurt, it just feels very odd. The nurses say that this has never happened before, as far as they know. I'm sooooo special.

It feels a bit hot. I can tell that yes, it will feel as though I have a sunburn from the inside out. Currently it's more like that tingly heat you feel when you've been in the sun a bit too long - not pleasant, but not bad yet.

The positioning process is the long part - that takes 15 minutes or so. The treatment itself only takes 5 minutes or so, very quick.

Afterwards I feel a little wobbly, but it's not too bad. A few hours later I feel nauseous and a little muscle-fatigued, and a few hours after that I am also really tired. I suspect that this, as with the burning, will increase in intensity as I go along, a cumulative effect. For now, an hour's nap gives me enough energy to make it through dinner and watching television until bedtime. Tonight I'm more nauseous and have a moderate headache, but I don't know how much of this is due to the radiation and how much might be caused by the new medication.

I'm not really reading my email too much - I'm reading the personal emails, and trying to respond when I can, but I don't have much energy and focus for writing. I apologize to all the very kind people who have sent me posts - it may be a few weeks before I get back to you, but I really do appreciate your support and kindness. It helps so much to know that you are there in my corner.

And if you read this and your are in my fiber list, please let my Secret Sister know that I got the beautiful shawl. It's fabulous, so soft and cuddly, and the colors are incredible (my favorites)! I can't wait until it gets cool enough that I can snuggle into it, but until then I hung it over the back of my rocking chair where I can see it every day, to remind me of you and all the gals.

That's a wonderful thing to think about. Thank you so much!

What's Next

2010-07-09T01:42:00.004-05:00

So.

I saw Dr. Bouncy. I saw the radiation oncologist. I saw the orthopedist.

Here's the upshot:

1. Against my better judgment, I am reluctantly following Dr. B's insistence that I switch to Faslodex. He wants to have another scan in two months, and if there is any progression at all, he will push hard for chemo. And let's face it, sooner or later it will come down to that fight - probably over and over again. Just thinking about it makes me tired.

2. At the meeting with Dr. B, the radiation doctor suggested two weeks of high dose radiation. When we went for the requisite scans and measurements, she changed this to three weeks. I'm hoping I won't see her again before the three weeks are over; she might raise the bid to three months.

We start treatment on Monday.

3. The orthopod wants to see me two weeks or so after the radiation treatment is done. It may be advisable to fill my the area in my left hip with bone cement, in order to try to stabilize the area. This involves punching holes through the left hip and into what is evidently two separate but adjacent tumor sites. Unfortunately, even if the tumors die off and stabilize, they do not leave nice empty spaces where they used to be - they leave soft stuff, sort of like fragile coral. The cement would have to sort of seep into whatever spaces might be available, and we don't know how stable it really would be.

We wouldn't consider this option for the tumor in the right hip - that area is not structurally unstable, so the potential benefits would not outweigh the risks. It's not a procedure that has been done a lot in the past - primarily it's been used to stabilize fracturing vertebrae, which are smaller and have less internal space to fill - so we don't know how well it would work in the long run. There's a fair risk of fracture or of problems, whether or not I decide to do the surgery. There will be more consultations between doctors before the option is even considered reasonably viable.

So that's where we are. Balancing, weighing, making decisions that will lead to other decisions. And down the road... well, we don't want to go there until we're forced to do so.

So this weekend I'll go down the road I know I want to travel. We will go down the Great River Road, stopping at our favorite berry-picking place. I will sit before a blooming garden on a high hill, picking juicy blueberries while watching the shadows of clouds scurry across the valley below and then on to the rolling hills across the way. I will feel the breeze caress my cheek, I will listen to the buzz of bees and the lowing of cows, and I will breathe in the smell of the good rich earth. For that time at least, I will savor being alive.

The rest will wait.

Q&A: La Vida Loca?

2010-07-02T07:03:00.006-05:00

The delightful Delighted Hands asks this question:

My family discuss this and we have very differing views; if facing a serious and probably terminal illness, what would we do-savor 'normal' life or explore a frenzy of activity before it's too late?

That is an excellent question! (And thank you very much for asking - it's hard for me to think of things to write about at the best of times, and at this frenzied moment creativity is at a low point.)

The answer is a little tricky; I can't give a definitive answer from a perfectly objective point of view, because I don't think there is a consensus among a board of experts from which to draw a conclusion. So I can only speak from my own experience and my own heart.

Let's start with a tricky aspect of the question in the first place: what I - and probably other people who have not directly cared for a loved one with terminal illness - did not know is that to a large degree, getting the diagnosis of a serious/terminal illness tends to carry with it a certain degree of lack of control over how we spend our time.

We don't get told, "You've got a year or so, go home and do what you need to do to make peace with your life."

Nope. When we are diagnosed with a serious illness, we suddenly find our calendars filled up with doctor appointments, treatment dates, medication schedules, nutrition requirements, all sorts of lifestyle changes. And if you are like me, you spend a lot of time in research. All of which take up a lot of time, energy, time, finances, time, patience, more energy... and time.

On top of this, we end up dealing with not only the energy drain and pain levels inherent in the progression of the disease itself, but we also have to deal with the energy drain and pain levels that the treatments for the various conditions cause. So we tend to move slower and sleep more (even though our sleep is rarely what you'd call refreshing), which limits our free time even more.

So not only are the number of days in which we are going to be breathing on this earth limited, but the number of hours we are able to spend as we would like are limited, as well. And our ability to do the things we'd like to do is often limited by our physical issues - sometimes severely limited.

But let's set all those considerations aside for a moment, and assume that somewhere in all those scheduling issues and treatment issues and physical limitations, you are able to make some time for yourself, to do what you want to do (within your physical limitations). How are you going to spend it?

Well, first of all, understand that for many of us, the demands of Real Life do not stop when we get sick. Just because our spouse and our kids know that we might not be there next year, they do not stop eating or working or going to school, they still have to see doctors and pay bills and do their homework, and of course the pets and the house do not suddenly start taking care of themselves.

And yes, everyone knows that eventually those things will have to be taken care of by someone else, when you are no longer there to do them. But habit is habit, and hardship is hardship, and nobody wants to start living without you before you are even gone. That eventuality is scary, and everyone wants to put it off as long as possible - so you all tend to hang on to the habits that you have developed over your lifetimes together. It's convenient, and it's comforting in the face of the dark unknown.

And really, you want to hang on to 'normal life'. Partly as a denial mechanism, partly as a way of retaining your lifestyle (and life, if you need to work in order to pay those doctor bills and do those silly eating-and-shelter things) - and partly as a way of retaining your independence and feeling of being part of the world for as long as possible. Who of us wants to be useless and a burden to our loved ones, a lump that everyone else has to step over or move around in order to get on with their own lives? Not to mention that sitting around doing nothing is incredibly boring.

Add to that the fact that sometimes the everyday stuff is pretty darned sweet, but that sweetness only happens with the everyday investments that come with it. Your kid rarely sits down with you and says, "Look, mom, we have some free Quality Time now, so let's have a heart-to-heart about what's going on in my life." Instead, she usually confides in you whilst wolfing down the eggs and toast you just made for yourself, after wheedling you into ironing her favorite awful t-shirt.

So you want to savor the everyday things. It's important, especially if you have a family.

On the other hand, many of us have put off the things we always wanted to do until we were more financially stable, or until we had more time, or until the kids were grown, or until work got less harried, or until we retired... and somehow, between all the everyday demands and the occasional crises and the economy, that Us Time never quite happened. So when our doctors suddenly inform us that it's unlikely that we're going to get to that imagined future, we realize that if we don't do it now, we are just never going to do it at all.

Do we take that little window between the time we learn of our impending doom and the time that we become bedridden to run around trying to do all the things we thought we'd get around to Some Day?

Well, it depends. Just because you are sick, you don't suddenly gain more time, fewer demands on your time and energy, or more money (see above)... so it may just not be possible to run around putting check marks on your Bucket List.

But if you can manage it, it can be very satisfying to go on that trip you always wanted to go on, to build that classic car you always wanted, to go up in an air balloon at sunrise, to see a Broadway Musical or go to Disneyland. If you can do these things in the company of someone who you love, it can be comforting - if bittersweet - to know that you are building a happy memory to sustain them when you are gone.

If you don't have kids, and if you have the resources, you can do both the everyday and the special Big Experience stuff at the same time. You can do laundry and argue with your spouse about proper handling of whites vs. colors and what constitutes a 'delicate' while traveling on exotic shores. Sounds like fun!

If you have the resources, but you are limited by the needs of kids or of an employer, then you can trade off between the comforts of 'normal life' and the satisfaction of experiencing some of those longed-for adventures and accomplishments.

I think that either would be the ideal, that combination of both the sweet mundane joys of everyday life and the ability to experience more of the outside world. I think if there is any possible way of arranging for both, it's worth the sacrifices that might be involved. I'm incredibly grateful to my mom and dad for making sacrifices in order to help me to do a bit of that while it was still possible. I suppose it would be stupid to say that I will never forget it, under the circumstances, but I do hope that they understand how much it has meant to me, and that it will bring them some comfort to be able to remember that in the future.

But if your resources are scant, as ours generally are, there is still a lot of satisfaction available in noting the beauty in a flying wedge of migrating geese, the lacy tracings of leafless branches against a steely winter sky, the sleepy twittering of finches at sunrise, the tender curve of a grandchild's cheek, the clean lines of a newly finished quilt or a nearly perfect golf shot. There is still joy to be celebrated in the graduation of a child from one stage of life to another, another family gathering peacefully managed, a career milestone accomplished, a new skill gained. There is still sweetness in the small moments with friends, family, and children that can be caught between all the everyday demands and crises of 'normal life'... and between the not-so-everyday demands and crises of a dwindling life.

So what do we do when faced with a terminal illness? We make do with what we've got. Life is rarely ideal, and certainly the end of life is even less so. Knowing at a visceral level how very limited our own time is really going to be sharpens our vision to some degree. It forces us to prioritize. It forces us to pay attention whenever we can, and to appreciate the small things as well as the grand. If we are lucky, we can experience both in our last days or years.

Go Ahead, Ask Me

2010-07-01T20:04:00.002-05:00

While I'm waiting to talk to the doctors and to set up the nasty treatments ahead, let's do something different.

Ask me a question**. Anything. It can be about me, it can be about breast cancer or cancer treatments, it can be about be about just about anything at all. If I don't know the answer, I'll try to find one, and if I can't find one, I'll make one up (I promise to give you a hint when I'm totally lying my head off or deliberately wandering about in Fairyland).

I'll paraphrase your questions in a future post, and answer. Probably in greater detail than you could possibly ever want.

Go ahead. You know you want to.

**ask the question in the comments section, or email me.