Xeloda, Week 4

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.



Xeloda, Week 1

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!



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

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

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

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

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

So a few brief updates:


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!


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.  


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.



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.  



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...

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

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

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

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...

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

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...

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

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

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




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

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

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

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...

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!



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...

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

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?

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

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...

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...

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

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

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

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...

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.

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...

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...

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...

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

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...

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!!



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

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

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


Chemo Sucks

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

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.


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...