Aaaaaaaaaaaaaahhhhh... choo.

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.



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

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

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).



 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...

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

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...

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...



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...

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

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

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

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...

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

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

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

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

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...

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

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

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

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


Another Country Heard From

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.


Looking Great

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

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

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?


Clock Ticking...

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.


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.




Sad News

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...



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.



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...

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

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...



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...

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

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

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)...