As you go through each holiday tradition and ritual, adjustments are made to accommodate your more limited capabilities. There are discussions about who should eventually take over certain responsibilities, and assessments are made as to whether particular traditions are going to be necessary at all in the future. Your ghost whispers, "When you aren't there to do it, or to need it."
When grace is said at the holiday table, overlaying the passionately expressed gratitude for our all being together, there is the silent yet universally understood question: Will we all be together ever again?
As you exchange parting hugs and the usual breezy plans for future gatherings with visiting relatives and friends, now there is a subtle shift of the eyes, a hesitancy or a forced jollity in the voices. Your ghost stands between you and your loved ones, pale and unacknowledged, but inexorable. Its presence fills the spaces between each spoken goodbye and between your bodies as you embrace: Will you be well enough to visit in the summer? Will you be there in the next holiday season? Or perhaps worse, will you be there, but in a condition that casts a pall over what would otherwise be a joyous occasion?
That we don't know the answer to any of these questions makes the ghost, if anything, even more real and more obtrusive than if we knew for a certainty the hour of our passing. If we could answer those questions, we could make plans for that eventuality. The ghost and its questions could be kept at a distance, at least for a while.
When I was in college, nearly the only thing the philosophers and the social scientists agreed upon was that what makes us human is our ability to live in the future. Every day we focus our individual and combined dreams, hopes, ambitions and plans on imagined futures, both near and distant. Nowadays there is some question as to whether this quality is vouchsafed only for humans, but still it is an experience that seems inherent to our existence.
Terminal illness interferes with that unique and humanizing process. By removing your ability to make plans for the future (at least, plans that you and your loved ones can really believe in), it makes you Other. Instead of looking into the future and seeing yourself enjoying this or accomplishing that, there is just a sort of grey obscuring fog, and your ghost with its persistent questions.
Your ghost demands that you make the most out of this moment, that you stay aware of and appreciate each thing as it happens, and there is good in that. But it puts you at a slight remove from everything - in a way, you are saying goodbye to each known and beloved person and experience as they pass you by. And because your loved ones cannot make plans for the future that include you (at least, plans that you and your loved ones can really believe in), they hold you at a slight remove, even as they feel the need to clasp you tighter. They cannot help but live in the future to some degree, because they are human. And so they, too, are saying goodbye.
In Dickens' "A Christmas Carol", Scrooge enters his Christmas morning burdened with those ghostly questions. He does not know if he will see another holiday season, or if the death of Tiny Tim can be delayed. He chooses to make the best of each moment he has... but he also makes promises for the future. In the end Dickens cannot help but reassure his audience that Scrooge and his little protégé live on for many years, allowing his happy characters that human ability to make plans and to avoid their own goodbyes for the foreseeable future. He could not leave that last ghost hanging about to spoil the pleasures of the holiday season for his readers.
We aren't always given that same privilege in life. We cannot write a comforting ending to our own story, one that answers and dismisses all the silent questions before they can be asked. We must live with the ghost while it is there, as best we can. If it puts us at a remove and makes us Other, we can still choose to appreciate what is human and sweet, while acknowledging that the bitter exists.
And maybe that is its own Yuletide Carol. We are our own ghosts, whether we see them or not. Perhaps that is as human as it gets.
The pain and the insomnia don't help, of course. Nor does the fear of what is to come, including, I suspect, a scan for brain mets. Of all the things about this monster that I'm fearful of, brain mets are the worst.
Add to all that a general weakness and fast-growing inability to do the normal things in life (who'd ever think anyone would be sad to lose the ability to shop for groceries?), and you have one very sorry-for-herself Self. It's like I've aged 40 years overnight. Very unpleasant, and I'm not handling it particularly well. There's no denying that the situation itself is enough to make anybody wail and gnash their teeth a bit, but it feels like more than that.
On the other hand, I'm feeling squeamish about getting on the pain med/sleep med/anti-depressant roller coaster, as I have such icky side-effects to just about everything. And once you start on that road it's like an avalanche - more meds for every side effect of the meds you're on, and then more meds for the side effects of those meds, and then you don't know what side effect is from what any more, and you can't eat any more because you are so stuffed from all the pills...
So. More decisions...
I'm not going to go off the AI's for now - I'll tough it out until we know whether it's working. If Dr. Bouncy says I should try a different AI, I will try it... but all of them have side effects, and the claim is supposedly that the side effects (esp. the pain part) can be a sign that the meds are working. Of course, they can be a sign of more progression, too. No scan allowed (other than possibly the MRI for brain mets) for another couple months, at least, and I hear from other gals in my boat that you can't really tell whether the meds are working for three or so months, in any case. So I have to just grit my teeth and bear it, and hope that all this won't be for naught.
In other news, I am starting the Low Dose Naltrexone next week, when it gets here from the pharmacy in Florida. I guess a lot of people in my situation get more 'flareup' from that at the beginning, too, and worse insomnia (is it possible to get negative amounts of sleep, that I could become some sort of black hole of sleeplessness?) But I'm hoping that it might eventually help my mood a bit, as it's supposed to increase endorphin production. We'll see...
In the meantime, if you have an aged grandmother who tends to drone on about all her aches and pains, please go sit next to her and patiently listen for a while, nod and look sympathetic and do your best to actually empathize with her. I can verify that she's paying a high price just to be sitting there boring you to tears.
Well, enough of that Pity Party. I won't know for a couple more months whether jumping off the dock did anything more than make me wet and cold, so I might as well get back to business...
For anyone interested, yes, I am getting side effects from the Aromasin. As usual, at least one of them is extremely rare. So far, none of them are terribly debilitating, although some are fairly unpleasant. And no, this is probably not all of them - some of the known side effects can show up months and even years later (if I get lucky enough to have years ahead of me to get side effects in, I will try to be gracious enough not to whine too much about it. I did say try, right?)
If the Aromasin works and gives me more functional time (although as Dr. Bouncy reminds me, probably not actual lifespan time), the side effects will be worth it. It's the Wait And See that's hard. Well, it's all hard, but the Wait And See is particularly tough, especially when you don't feel that you have much time for many other experiments if this one doesn't work out.
In the meantime, we are taking advantage of what time we have, as much as we can. We are doing as many of the Christmas Traditions as we can fit in. We are looking forward to the arrival of a very dear friend from New York City in the near future, and the arrival of an old friend from D.C. in the New Year, and perhaps the arrival of my only and aforementioned girl cousin soon after that. If time, health, and tax returns allow, we will try to get in another small vacation in the next six months or so. We'll make what plans we can, while we can.
Because we don't have time to waste.
In this case, of course, it won't get better. But maybe it could be kept from getting really unbearable for just a little while longer. Obviously I don't have the luxury of time for exploration and experimentation. I've researched until I'm blue in the face, and have done so from the time I was diagnosed. I'm not learning anything new, really, just "reviewing the situation," as our friend Fagin burbled so charmingly in the old beloved musical.
With my history with drugs, etc., I know I'm going to take a big hit, side-effects wise. All the options have lots of dire potential, and the main two at this point - Tamoxifen or one of the Aromatase Inhibitors (AI's) - are more or less equal in the awfulness of their different Worst Case Scenarios.
I don't have time to mull it over, really. If I don't already have brain mets (my own personal Worst Fear Ever), or spine mets (usually a quick ticket to the end - "Do Not Pass Go, in the laughably unlikely event that you reach it,") then they are unlikely to be far behind. I have to throw everything I can at it.
I'm not giving up on the alternative treatments. I'm adding more, and reinstating some old ones. It is possible that one of the several things I'd stopped doing since the last scan was critical to the stasis the cancer seemed to be at that time. It is possible that other options could bring some relief. But it is time to throw everything reasonable at this monster. And all things being equal with the hormonal chemo treatments, I guess I'll take the one that has even a very small advantage in time-to-progression**, percentage-wise.
So I'm jumping off the end of the dock. Aromasin it is.
Kindly ignore any screeching you hear in the next little bit. I'm hoping I will adjust.
**As my doctor reminded me several times on Friday, none of the options will lengthen my life. They might keep the tumors smaller for a while, and keep the spread down for a while... but then the progression will likely be faster when it does come. It's a case of balancing the side-effects of the medications against the side-effects of the tumors during that period when the meds keep the tumors at bay. Which is an unknown, in itself. We're just gambling here, folks, and it's pretty steep house odds.
Now we have a better idea, even though we don't like the answer. From the sound of it, Dr. Bouncy wasn't liking it, either - I think he was hopeful, too.
I never seem to beat the odds in the right direction.
So. Nothing brilliant to say at the moment - I haven't had time to process it all. Not that there's necessarily much brilliant to say after processing, either. Pretty much what there was to say before the bad news:
One is the lump that is growing on my chest wall, which is causing me some anxiety. About 20% of women my age get local recurrence of breast cancer - in other words, they get another tumor in the same breast (or, in the case for those of us no longer sporting those appendages, in the same region where the breast and its unwelcome guest previously resided). In my life history, I have shown myself gifted in beating the odds... in the wrong direction. So that theoretically lovely 80% chance that I wouldn't suffer a recurrence is not of any particular comfort to me.
If that lump is cancer, I want it out. Not that it necessarily will do me much good to get it out, or that it might not actually do me more harm than good physically - there is a good argument to be made against [more] surgery. It's not like I don't have malignant tumors comfortably growing elsewhere, tumors that are not amenable to excision and so must be left there in the dark to do as they will. But the lumps I can feel, the ones that wave cheerfully at me as they do their dirty work... well, it's just harder for me to get on with what's left of my life when I'm being mocked and badgered from the peanut gallery. They make me more aware that I am becoming an overcrowded, crumbling dwelling for unwanted and destructive tenants; if I can't evict them or restrict their reproductive proclivities, I at least don't want to be subjected to a constant play-by-play update on their daily activities.
The other thing weighing on the side of an earlier scan is a sort of vortex of treatment decisions and situations that have been going on concurrently to the appearance of the new arrival. The scan gives me a sort of feedback on what's been happening lately. With so many possible influences, it's a little difficult to know what is causing what, but a scan will give me an idea of whether I need to make changes in at least some aspect or other of my life. It won't, unfortunately, clue me in to which aspect/aspects need to be changed, or whether changing any aspect will actually do me any good - the percentages are not in my favor, and we've already covered my history with percentages.
But I'm a questing creature by nature, so I am always craving more information. Cancer may kill this cat before Curiosity does, but the odds are still pretty good that my last words will be, "What's that?" (A suitable end to a contrary, backwards life, since my first words answered the question: "That's a button!")
So now I get to wait for the results. Hopefully I will get them next week some time, although the holiday season is slowing things down considerably at the health care facilities around here. Hopefully I will get the results quickly enough that I can make an appointment with my surgeon that will allow me to recover by Christmas, if surgery is warranted.
In the meantime, there is Thanksgiving and Black Friday to keep me busy, and then the weekend and early part of the week to wait through. Looking at my calendar, I'd better think up a short-term but engrossing project to keep me from spending the time in unduly harassing innocent and powerless medical receptionists and schedulers. Maybe I should knit a house cozy...
I have a warped sense of humor, and sometimes it leads me astray. Or perhaps it leads others astray. In any case, for those of you alarmed by my last post: No, I do not think that a nurse spit anything into my gaping chest. I was being facetious, as I often do in times of stress and/or fear, in order to distract myself from my internal urge to panic and fret. I apologize if my attempts to amuse actually caused distress... that was certainly not my intention.
That being done and over with, let's get on to the next announcement:
If you live in Minnesota, you have a wonderful opportunity coming up this week. On Nov. 17th, from 8am until the following 8am, you can give a donation - it doesn't have to be big, any donation will do - to the charity or organization of your choice, and if you make that donation through Give MN, they will make a matching donation of 50 cents on the dollar.
So if you were to give $10 to, oh, let's say Pathways or Gilda's Club or Vail Place or the Weaver's Guild of MN (just, you know, choosing at random, *koff*), if you made the donation through Give MN, it would be worth $15. Great deal!
Here's what you do:
1. Go to www.GiveMN.org.
2. In the box that says "Donate," type in the org of your choice next to "Find a nonprofit."
3. Click on the link for your org when it comes up.
4. Enter your donation amount, click on Donate, then complete the form.
Give MN has a $500,000 matching fund available. I imagine your favorite nonprofit could use a little bit of funding at the moment - it's been a bad year for them, too. So scrape just a little bit together on the 17th and give. Starting a bit early in this Giving Season will go a lot further this Tuesday, and we're all for stretching our dollars this year!!
I am trying to think of some good ones, but the only thing I can think of is that you get to park in the handicapped spaces, which saves you money on the meter and is handy in icy parking lots between Black Friday and the end of 'Xmas Present Exchange Week'.
The rest of the effects are less desirable. For me - at least for now - the biggest issue is that decisions of all sorts become vastly more complicated by the fact that you don't know if you are going to be functional in X period of time. You don't even know if you will be around in X period of time. What you invest in, what you speed up the timeline for, what you ignore, what you get done Right Now... even what you dream about can change from day to day, depending on the configuration of your doctor's eyebrows during your last visit, the most recent mysterious twinge, the certain look in your child's eye as he gazes at you instead of the television screen. So right at the time when every decision you make becomes more urgent and potentially life-changing, making decisions becomes a much more complicated, uncertain, and tangled process.
One of the big decisions you have to make involve treatment options. And in my type of situation, you don't get to make the decision just once and then take a deep breath and move on. One of the only fairly sure things your doctor can tell you is that whatever treatment you decide on, it is not going to work forever. Sooner or later, nobody can say exactly when, it will stop working (if it ever works at all), and you will have to make more decisions. And each decision is likely to be on a shorter timeline than the last.
Cancer is clever, it learns and adapts on an accelerated basis as it goes along (unlike my brain, which forgets and gets distracted on an accelerated basis as I go along).
One of the side-effects of this is that doctors qualify nearly everything that they say to you as you try to get information on which to make a decision. They aren't trying to sidestep responsibility so much as they are just trying to be truthful; cancer is still mostly a big foggy unknown in which Stuff Happens.
So when you get a lumpectomy or mastectomy in hopes of getting rid of the primary cancer site, your doctor will warn you that although the tissue in which the tumor was nestled is gone, this is no guarantee that it will not settle back in at a later date. You can get rid of your breasts, but you can't get rid of your chest.
And that, Dear Reader, is where this past few weeks come in. Because I have a little lump in my chest, just an inch or less from where the original tumor was. My doctors inform me, with just that note of hopeful dubiousness that frequently leavens their statements about my future, that cancerous lumps usually aren't as easy to push around as this lump is. I guess the hope is that this might be scar tissue forming around the partly-dissolved Lemon Drop a nurse absentmindedly spit into my open chest during the surgery. I am to 'watch' the lump for signs of growth, and report back for surgery if it gets bigger. Theoretically it can be taken out 'fairly easily' - one gets the impression that it could, for instance, be popped out during a casual lunch date.
I can only hope that a passing teenager doesn't accidentally drop a scar-tissue-inducing french fry into me while my surgeon is ordering her half-caf latte.
In the meantime, this whole 'watching' thing is driving me nuts. Well, okay, more nuts than is occasionally the case. I show every sign of repeating the anxiously obsessive behavior that I displayed towards the original tumor:
Check to see if the lump is bigger, can't really tell; watch a bit of tv, check again in case the lump has grown in the last five minutes, it could be a little bigger than it was at the doctor's office, is it bigger? can't really tell; read a chapter of my latest library book (mostly funny book, but inevitably we have gotten to the Pathos Chapter where someone dies), cry a little, check the lump again, move it around a bit to prove that it still is in the 'not as likely to be cancer even though it could be' category; finish listening to a podcast while knitting a self-designed and dubious-looking hat for the husband, check the lump again, for some reason it seems tender (maybe from being prodded and pressed every five minutes, I really need to leave it alone); check my email, head to the bathroom and brush the teeth while struggling against the urge to check the lump again, snuggle up to the snoring husband, adjust my pillow, lay rigid for five minutes, check the lump again, it really could be bigger, I think it is... or maybe I just think it's bigger because I'm fretting about it, or maybe it's bigger because it's inflamed by all the messing about it's getting; grit teeth and make determined silent oath to leave the lump alone; lay in the dark, staring at the ceiling for at least two hours, thinking about the lump and the advisability of having a third surgery in one year; spend another hour thinking about how if I go to sleep now the husband's alarm is going to go off just as I really settle into slumber; lose control of hand, check the lump, startle guiltily as the alarm sounds; try to take advantage of subsequent lack of snoring companion by snuggling into his slumber-warmed cave of blankets; give up the effort when son's alarm goes off; lever self off bed, stumble out to the living room, check email, fuss at scruffy offspring as he runs out the door without his lunch or coat; remember to take bone-strengthening supplement only when I'm hungry, resent having to grudgingly wait another hour before eating. Check the lump.
Yesterday I had better control over myself, perhaps because I was able to talk about the lump to several people, mostly folks whose job it is to listen to me fret for fifty minutes. So I only checked the lump three times, and one of those didn't count because I only checked to see if the skin over the lump indicated something was there. It did. But I didn't check that before seeing my doctors, so I don't know if that's a sign of growth or not.
Obviously this behavior is not good for me, and it might be better just to get the damned thing out so that I could just deal with it, whatever the resulting biopsy might show. But again, another surgery so soon after the others, with the inevitable hit to the immune system and the eye function. If it's just scar tissue, I'd be weakening an already stressed system right when I need my immunity function to be as strong as possible (already asking a lot, since it was never very functional in the first place).
I found out on Friday that I'm allergic to just about everything, and the thing I'm MOST allergic to is the supplements I am using to augment my laughably low stomach acid. Because it turns out that Betaine HCL is made from beets, and in spite of the fact that I've probably had beets twice in my entire life, beets are the king of the food allergy castle.
So the thing that allows me to process my food is the thing I most especially can't have.
Beets are closely followed on the No No list by sesame. SESAME?? You're kidding, right? Nope.
But before I get too giddy with 'this is pretty easy to avoid', on we go to.... well, to just about everything except lettuce and nuts and meat (but no sauces or dressings allowed, kiddies, we wouldn't want to have any sort of flavor to accidentally contaminate our food).
I guess I should be grateful I can have meat and nuts (although I can't digest them), but geeeeeeeez...
For one thing, I dreaded telling him and his lovely nurse that I had decided to go against their advice re Tamoxifen, at least for the moment. I am such a People Pleaser by nature, although not by effect. And I really want to please Dr. Bouncy and Nurse Jamie, because they are so kind and caring and sweet. This is the only thing they have to offer me, being strictly Standard Treatment sort of folks, and I feel bad about rejecting what is obviously their best advice and hope for me.
The other thing I was anxious about was the pain that has developed in my back, right around the spot where my kidney ends and my liver begins. With BC, liver mets are always a concern, and since I'd decided against hormone therapy (at least, for now), it would be both humiliating and scary to come smack up against a big "I Told You So" coming right out of the gate.
So Dr. Bouncy (who of course was not at all phased/fazed (sp?) by my confession of stubborn resistance - you would think I was predictable, or something) poked and prodded me a bit, pronounced himself fairly happy with my condition, decided that assuming the pain doesn't get worse it is reasonable to have my next scan in January, and cheerfully waved me off for kidney and liver function tests (what's a few quarts of bodily fluid between friends?)
So there we are. Several months of fretting for nothing.
Time to go eat lunch. I have an appointment with my surgeon for my post-surgery checkup this afternoon. Now, I know that she will disapprove of my treatment decisions and be very open about her feelings on the matter... but somehow I don't feel as badly about that as I felt about Dr. Bouncy and the lovely Nurse Jamie's opinions. I suppose I shouldn't tell her that, though.
Where are those steel butterflies when you need them?
The group photo was taken at the very end of the retreat. We had just finished the last group exercise, which was a lovely goodbye ceremony... during which many of us, and me most particularly, leaked muchly from the eyes (and in my case, less attractively, from the nose). But there we are, stacked two-by-two on the stairs, all of us glowing, and those radiant smiles are just as sincere as the tears of moments before. The sight makes me smile (hopefully un-crabbying my face, just for a moment).
It was an amazing thing, that retreat. Those were amazing women, those gals.
It seems miraculous to me that human beings are built in such a way, with such spirit that we can grow to love so many people in less than four days. Such a short time by the ticking of the clock, but a perfectly adequate time by the beating of the heart.
We require our own retreat (and ideally should have our own support groups, IMO), because it's hard for women in the other stages of cancer to express their true feelings when we are present - after all, we are their nightmare. The concerns we have, our feelings and our symptoms and our fears, they are all the things that 'survivors' are most desperate to avoid. And of course it's hard for us to express our true feelings when they are present, because we don't want to make them fearful and depressed, and we don't want to make them feel that their concerns aren't serious enough to be deserving of sympathy and support.
So the other gals get a large-scale retreat that challenges them physically, that opens them up to hope and joy and life. We get a small-scale retreat that pampers us physically and encourages us to both take care of business and open ourselves to the moment, as the moment is all we know with certainty that we have.
There were ten of us plus four group leaders, three of whom also have metastatic cancer. Some of us were bald, some had heads that were as downy as baby chicks, some of us had abundant hair. Some of us were grandmothers, some were mothers, some were married, some were single. Few of us looked frail, even fewer looked obviously ill. Physical pain and uneven energy was a given, a matter of degree at any particular moment, not something that needed to be dwelt upon.
We had much in common, but our journeys with cancer were unique - there was very little comparing of symptoms or treatments, even though most of us were currently in treatment and all of us had undergone various treatments and surgeries and testing. At meals, when discussion was not directed, we spoke about the concerns that all women share: career, interests, friends, family.
Mostly family. When you are forced to prioritize, when you simplify things until you get to the core of what really matters, it usually comes down to family.
The retreat was a wonderful experience. We talked about our feelings and our fears, of course, but we also talked about practical matters - organization and planning, healthcare, finances, the physical issues of menopause (most women with breast cancer are either menopausal at diagnosis or thrown into sudden menopause by the cancer treatments). We did yoga, we did breathing exercises, we listened to music, we painted. We swam and showered and jacuzzi'd ourselves until we resembled very pale raisins. We ate more food in four days than most of us eat in a month, and it was all delicious.
Those four days passed very swiftly, and we began our goodbyes on the third. It was, of course, terrible and sad to know that so many of us are likely to be gone in three years. The parting hours were bittersweet, burdened as they were with that unspoken understanding. But between the beginning and the end there was a lot of eating and talking and and crying and teasing and laughter.
...Pretty much like life, really, except with featherbeds and turndown service.
If you want a bit of a photo-plus-commentary on the first part of my adventures, you can find it HERE.
Otherwise, I will be reporting on the second part soon. See you then!!
Today I took a class on 'Healing Through Laughter' with several other folks, and it was really good for me in several ways. Yes, we laughed, and yes, we talked about lightening up a bit, and we played quite a bit, but I also got some tools to use that I think will be useful with my craftwork and I got a rather delightful idea of what to do with our poor useless back yard. It won't necessarily be attractive, but it would be fun, and a gift to Scott and Bren, which is even better.
My feelings have been up and down a lot lately. I'm a bit stressed about the decisions I have to make, and stressed about the changes to come, and stressed about all the things I have to do in order to prepare for both the short and the long term future. But I'm excited about the upcoming trip and retreat, and happy about all the lovely people I've been meeting along this journey, and grateful to all the people who have been supporting me on both an emotional and a practical level this year. I'm sad that I may be leaving this world sooner than I would wish, but joyful that it is so very beautiful and full of wonders.
There was a huge flock of sparrows on my lawn and steps and rooftop this morning when I came home. Such small, unremarkable little balls of fluff, but when they took flight with a drumming rustle and a flourishing swoop into the clear blue sky, my heart took wing with them, they were so joyous and free and alive.
(and hungry, too, but then... aren't we all?)
He may very well be correct - it's more likely than not. But right is right, and I can't just sit back resignedly and wait for the worst to happen to my neighbors and my child, any more than I can just sit back and wait for the worst to happen to me. They may say I'm doomed, I may even think they are probably right, but I'm not going to go quietly.
So. Here's a bit of noise, and I've written to my representatives in D.C. to make sure they can hear it. They can plug their ears, but that doesn't mean we shouldn't speak the truth.
Spontaneous bleeding was something I thought I left behind with the hysterectomy, seven months ago.
Evidently not. I tell you, it's been a great weekend. So it's back to the gynecologist. Luckily someone decided to have a baby during my scheduled 6-month checkup, so I was re-scheduled to tomorrow in any case. At least I won't have to try to wrangle something at the last minute - if you are a gal, you know how easy (*koff*) it is to get an appointment with your OB/Gyn.
Blah, blah, blah...
She irritably asserted that I had sleep apnea (because everyone else who comes there does, according to her).
She asserted that my stuffiness at night was not allergies but irritation from the apnea (because everyone else has that problem).
She asserted that my skin couldn't possibly be allergic to/irritated by the glue they used on my head/face or the material the mask for the c-pap is made out of (ignore those little round contact-shaped rashes on your skin in the morning, nobody else ever had those).
In the morning she did admit that I didn't seem to have apnea, but added in a complaining tone that this was probably because when I managed to doze off I slept on my side instead of 'supine'. Evidently I would have had apnea like everybody else if I had slept in the slightly different position I had reported as being my habit. Clearly I was just being difficult. (I do usually tilt a bit further forward than a completely side-laying position, but there was a bunch of wires and glued-on contacts on my head and face and a bunch of machinery stuffed up my nostrils, so I wasn't able to sleep in a way that put more pressure on them).
She then made up for this tiny admission by sarcastically noting that the wires had tipped my cup of water all over the cart - 'it's only fifteen thousand dollars worth of computer.' I refrained from pointing out that I had originally put my cup on the ledge on the other side, and that she was the one who had decided it should be moved to the cart.
She was able to reassert her position very quickly after that by directing me to the stubbornly arctic shower by which I was supposed to rid myself of the half pound of glue and interesting blue X's she'd ground into my head and face. Nobody else has ever complained about the shower being too icy. She came into my room to inform me of this, but did not put her hand into the water to check it when I ran the shower as a demonstration.
And she was right. Nobody else complained about the shower this morning. The two other people having sleep studies this morning were stoic looking older men who were very quietly sliding their way towards the elevators when I flagged them down. I asked them how they had been able to manage the cold showers.
Neither of them had used the shower.
We all washed our heads in the bathroom sinks.
4 large ripe avocados
1 large cucumber
1 green chili, de-seeded and de-ribbed
1 green bell pepper, de-seeded and de-ribbed
1 large sweet onion, peeled
2-3+ cloves garlic, peeled
3-4 cups cold, pure water
1-2 tsp. salt (to taste)
small bunch cilantro
2 limes, juiced
1-2 ripe tomatoes, diced small (optional)
Roughly chop onions, peppers, cucumber, & garlic, put in blender or processor with 3 cups water, process thoroughly. Strain through fine colander, pressing well to extract all the juices. Return strained part to blender*, add avocados, lime juice, tsp. salt & cilantro (setting aside a few leafs for garnish). Puree until smooth. Add more water to desired thickness. Adjust seasoning but keep in mind the garnishes for individual preferences.
*The parts left in the colander go in the compost, of course...
**Thanks to Gretchen & Olivia for the photo - looks great!
but there's life in the old girl yet, and toujours gai, archy. (Ten points if you place the quote**)
Not only that, but there are a few perks that come with the territory. One of which is getting to meet all the lovely new people that I've met this past year or so, on and offline - you know who you are, all of you, and I have no idea how I managed this long without knowing you. Bless you all, each and every one!
I am also attending one of the Infinite Boundaries retreats in September... and if you are living with breast cancer, either as a patient or as a Survivor, you should know about this program. Link to their webpage, they can explain it better than I. They have wonderful retreats for all women who have experienced breast cancer, but they also have special retreats designed specially for young women, women with metastatic cancer, and women who are experiencing this scourge on their own without a partner for support. I haven't yet attended one of these retreats, but they look fabulous, and much of the cost is offset by their fund-raisers and sponsors, so that the cost is very reasonable (they also have scholarships available for folks who otherwise couldn't attend at all).
I feel very grateful to have these wonderful programs available in my area, and want to encourage anyone nearby to either take advantage of them (if appropriate) or support them (if you are lucky enough not to need them). Thanks to everyone who made these programs possible - I, for one, would never have been able to do any of these things without them.
**not for you, mom, that would be cheating!!
But that all said, when it comes to Healthy Diet, I don't think those words mean what she thinks they mean. At least, not for me.
It seems unfair that a handful of cherries (very anti-cancer, btw), the occasional sugar snap pea, and a half cup of hummus can have such a disastrous affect on my BMI. But there we are - life is not fair (yes, dad, I finally admit it) and neither, obviously, is my body. I have a lot of beefs with it, not the least of which is the whole cancer thing, but currently one of my complaints is that many of the things that are carby enough to make me gain weight (fruit, legumes, root veg) are also the things that make my blood glucose levels go down. The only thing I can think is that these things are pushing my insulin into frenzied action - where very strict low carbing just lets my insulin sit around on its lazy butt all day, letting the blood sugar rise unchecked for long periods of time.
This doesn't make me happy. High insulin levels, which I have, are very bad for your body, and cause all sorts of problems. But high blood glucose feeds the tumors, and of course that causes all sorts of problems, too. This is one of those Fractured Fairy Tales, right? Forget the Lady, I get The Tiger Or The Tiger...
So anyway, my friend got into this whole Blue Zone thing pretty heavily around the same time that she finally gave in and stopped cooking two sets of meals for her family (veg for the veggie half and meat-inclusion for the carnivorously inclined). The idea of following life advice from Mr. Buettner is enough to make me expire choking on the irony, but we'll set that aside for the moment.
I'm suspicious of the Blue Zone thing. Some of the recommendations are good, but can be found in any health-related book or website - exercise, don't overeat, spend time in relaxing/positive pursuits, find meaning in your life, be with people you love. The major point of difference, then, is the promotion of vegetarianism as the preferable, healthiest diet.
And that's where I have problems. It's not that I don't think vegetarianism can't be healthy, or at least that it can't be healthy for some people - but as a blanket statement of being healthiest for all people, the evidence just is not there.** I note that there are zones of longevity where meat is eaten that are strategically ignored in the choice of Blue Zones, and that there are a lot of reasons that the Blue Zones may have good longevity that have nothing to do with meat consumption (quality of life/environmental quality/chemical exposure/lack of tobacco, caffeine, and alcohol abuse/[meaningful, productive] exercise in daily life/probiotic, fish, nut, and phytoestrogen intake/social support, etc). One of the Blue Zones, for instance, is Loma Linda, which Buettner claims as a longevity champion because of the large population of (vegetarian) Seventh Day Adventists. Which sounds great, except that studies have shown that the Amish can claim health and longevity rates at least equal to the Adventists, and the Amish diet is significant for its inclusion of not only meat, but a good deal of (fatty) red meat.***
So when my friend enthusiastically recommended that we visit a local Raw Foods restaurant, and
Leafs and twigs, yum.
But we went, and of course the company was great - but the food was great, too. Mom and I were pleasantly surprised, and my friend was... well, smug, really. In the nicest way possible, because she is the nicest person possible, but let's face it, she was right and I was wrong. Who could resist the temptation to string that sort of triumph out a little bit more, in the name of health and friendship?
And thus was born the Raw Foods Experiment. Which mostly involves buying expensive and weird things at the nearest Whole Foods/Health Foods Co-Op once a week, then going to my friend's house and spending the next 6 or so hours squinting at recipes, slicing and processing odd stuff, arranging the result attractively on plates or in bowls, and inflicting it on innocent passersby (or young persons unwary enough to be playing video games within easy reach of the kitchen, when they could be outside getting exercise and processing vitamin D and avoiding our clutches).
I'm sure this stuff is healthy, in terms of having lots of vitamins and minerals and phytochemicals and antioxidants and such. And I regret that I keep forgetting to bring my camera, because it certainly is about the prettiest food I've produced in a long time. You can't beat raw food for bright colors, especially in the green range.
And so far, the food has tasted... well, sometimes it's very good, and often it's odd but tolerable. We haven't yet made anything we couldn't actually stomach (hee). The trick is to judge it by its own lights, rather than comparing it to cooked food. The tastes and textures are different, but they are interesting in their own way. If it didn't take so blasted long to produce a meal, I could see eating these sorts of things more often. You know, if it wasn't for the gaining weight thing.
Nutritional Yeast, anyone?
** For more information, if you are interested, read science writer Gary Taubes' exhaustively researched books and articles on the subject of diet.
*** To those who know me and are about to point out that the Amish also eat a lot of potatoes and grains - hey, I admit that. I'm not saying that the Amish diet is superior, either, or that ANY diet is superior to another per se. I am saying that diet is one factor in a rather large constellation of health-related issues. No one particular diet is going to meet the needs of all people, and diet is not going to fix all ills. So there.
Okay, here's the thing. All month I've basically been at war with the healthcare system, and of course these are not battles I can in any way win. I keep thinking that I should post something here, but it just all seems like so much whining and moaning, and who wants to read that?
And although the mystery of 'How Eileen manages to be both overweight AND vastly undernourished' is a fascinating subject, I'm fairly certain you don't want to hear the details of my adventures in collecting various 'samples' with which we are trying to move towards solving that particular puzzle.
But I know I am neglecting you, Dear Reader, and that cannot be tolerated forever. So I promise to report as soon as we find out anything really interesting and useful, and in the meantime I will try to be a bit more diligent about finding something to write about that won't put us both to sleep.
So. Topics of interest. How do you feel about Raw Food?
**one of those things which really are even ickier in actuality than in theory...
Five whole days of gustatory freedom, wheeeeeeeeee!!
Of course, at the end of that I have to fast, then go through a complex ritual of urine collection and sampling, and then a whole battery of fasting-enhanced blood tests. And then endocrine tests, and neurology/sleeping tests, and then probably more tests. All this so that - you guessed it - I can take more pills. So the future is not so bright I've got to wear shades, but heck, I'll take what I can get. Five days of Pill Light.
I'm living dangerously, and counting this as a vacation from Being Good. Which means I'm still not eating grains, but I'm throwing caution to the winds and eating ice cream. And you can't stop me. Ha Haaaaaa....
In celebration of which, I give you this. I hope you find it as delectable as I did.
I DO have too little stomach acid, and I AM allergic to myself.
One of the things about having Stage IV Cancer is that doctors will test things out more thoroughly than they otherwise are inclined to do.
So now when I complain about symptoms that I have actually been complaining of for two decades and trying to get someone to take seriously, doctors are willing to do more than pat me on the head and imply that I am either depressed or just trying to get attention. They are now willing to be pushed into looking more deeply into the issue. Of course, I still have to ask them to do so - but at least now they will actually do it.
So we are starting to work our way through the various problems that are suddenly reaching Critical Mass. I'm not happy that they had to reach this point before I could get anyone to take me seriously, but we are where we are, and I suppose there is something to be said for being able to say, "I Told You So!"
So now we find that I have pernicious anemia and some (various, probable long-term) underlying causes for the pernicious anemia... probably autoimmunity issues (no big aha! moment there) and gastric issues, including lack of sufficient stomach acid.
I would like to give a big Shouting Out "Ahem" to the gastrointestinal doc who abused me last summer when I told her I thought my severe acid reflux was being caused by too little stomach acid, rather than too much.
We're just at the beginning of sorting things out, and I don't know whether we'll get to the core issues in time to do much good, but the current result is that on Tuesday afternoon Dr. Bouncy** gave me a B12 shot.
About six hours later, for no apparent reason, I suddenly was filled with a completely unreasonable feeling of... well, it was a lot like optimism. And on Wednesday morning my son said, "Mom, what ARE you DOING!?! Are you dancing in your chair?!!?" Yes, I was... the song my internal radio was playing in my head was a peppy, happy one, and I was enjoying it. A lot.
Energy. So THAT is what it feels like.
I must learn to use this new power for Good, rather than Evil.
(I want a B12 shot every day...)
**I LOVE Dr. Bouncy!!
If you have links or (toll-free) phone numbers, addresses, etc. for informational, medical, financial, and other practical forms of assistance for those who are dealing with breast cancer - including friends and family - please let me know. I will be listing info for US National, international, and individual state organizations as they come to me.
Thanks for your help!
Nobody's talking about 'giving up', whatever that would mean... I mean, I'm not laying down in the middle of the street and refusing to get up, and I'm not wailing and gnashing my teeth or anything (not too often, anyway). But there has been very little advancement towards a cure of metastatic cancers - including breast cancers, which are prone to being aggressive and nasty - in 60 years. So what is the likelihood that the Blue Fairy is going to come down and wave her wand and magically cure me now? About nil.
I don't want to hang my happiness or hopes or plans on a cure, because that is a fairy tale... at least, it's a fairy tale for those of us who have cancer now. Ten, thirty years down the line, maybe, but I'm not going to be here then. I've got now, so let's talk about what is important now. I've got maybe a few months of functional time, maybe more than that if I'm lucky, and then it gets ugly for a while, and then I'll be gone. So let's take advantage of what we can realistically hope I've got. I don't have time to waste on pretense.
"They could find a cure in the next couple years, so you shouldn't give up."
I don't know what to say when people say that sort of thing... because really, although their intentions might be good, they are saying that sort of thing for themselves more than for me. Maybe they need to comfort themselves, and certainly I don't want to deny them whatever comfort they can get. I don't want to make people feel worse if it's not necessary. But in the end, I think that sort of comfort ends up putting off all the things you should do when you know death is really standing near: telling each other the truth, building bridges, saying goodbye in the ways that matter most.
I can't help thinking about what it would have meant to my husband and his family if they had all faced his father's deteriorating health more directly. He could have mended ties with Scott, fully expressed his love for his other kids, built relationships with his grandchildren and left them with wonderful and sustaining memories. He could have been happy for his last few months, his last years... not more comfortable physically, perhaps, but he could have felt more loved and less lonely. They all could have felt more loved and comforted, if not less bereft, when the end came.
Stage IV cancer is called 'terminal' by the government agencies for a reason. I have a limited period of time in which to act... so if you love me, tell me now. If you're mad at me or hurt by something I've said or done, tell me now. If there's something you've always wanted to do with me, do it with me now. Tomorrow I may have to be dealing with the physical exigencies of dying, and I won't have the energy or time to deal with those other things. Don't wait in hopes that a magical cure will save you from the necessity, because it won't. Now is what we have.
And while you're at it, do the same with the other people you care about. Because you never know. Now might be better than later - and now is definitely the time to make later better, if you can.
Mastectomies are Big Stuff. There were a few things that it would have helped me to know before they actually happened. Things that would have allowed me to prevent, mitigate, or at least deal with the aftermath of my surgery. So in case you, Dear Reader, are going to have a mastectomy at some point in your future, or if you have a loved one who might do so, here are some things that might be helpful to know:
1. If you had another major surgery shortly before this one, you may still have anesthetic in your system. Anesthetic stays in your tissues for a long time, especially if you are... um, curvacious. Which means that the new anesthetic is going to pile up on top of and interact with the old. This is not a good thing. Waking up can be harder, side effects (nausea, depression, dizziness, weakness, exhaustion, etc.) can be more extreme and may last longer post-operatively.
2. They will give you antibiotics intravenously during the surgery, and then more antibiotics in pill form afterwards, which you may be asked to take for several weeks post-operatively. This is meant to prevent infection. Be aware that these may be very strong antibiotics, which can have serious side effects. Keep your doctor updated if you have any problems that you think may be related to the antibiotics. If you start developing any infection along your incisions, or want to avoid infection by cleansing the area regularly, I highly recommend a tea tree oil antiseptic - I use one I get from my local organic grocery that also has lavender oil, and have had excellent results with it. Also remember that antibiotics kill all the flora in your intestines, which can affect your digestion and immune system in Not So Great ways - this can cause lots of problems, including yeast infections. Yuck. Take good probiotics during and after treatment with antibiotics - eating a good live-culture/multi-culture yogurt every day is a good start. For those not used to yogurt, I think Brown Cow has a very nice mild flavor.
3. If you are well endowed before the surgery, you are almost guaranteed to end up with lumps in places where you did not have lumps before. Tissue that used to be pulled forward by your breasts slides back under your arms, for one thing, and you also can end up with lumps on either side of the center of your chest. Frankly, it's like trading in your two larger breasts for a whole slew of smaller ones that crop up in very odd places (not to mention the odd swaths of skin - unfortunately I seem to have been left with a lot of this). This can be pretty shocking the first time you see and/or feel them. These lumps can be significant, both in terms of how they look and in terms of function - they can impede arm movement and can cause rashes (especially if you are also struggling with hot flashes and tending to collect moisture in certain areas).
I can't tell you how to get over this feeling of shock, or your dismay re the inconvenience/discomfort they can cause. I haven't figured it out yet. It's possible that I may never do so, since I have a particularly bad case, myself. You are on your own about that, but do know that I sympathize.
In the meantime, you may be able to minimize some of this by asking your surgeon (during the weeks before surgery) if s/he works with a plastic surgeon who can help them minimize this problem. But be prepared - because that may not be enough. It wasn't enough in my case, for instance.
4. There are camisoles that are designed specially for post-mastectomy wear. They are generally designed to be soft and to have seams on the outside rather than inside where they could irritate your incisions. Some have wide shoulder straps, which can be nice. They generally come with soft/light fiber prosthetics that you can tuck into little pockets on the chest (you won't be able to be measured for 'real prosthetics' for at least a month, quite possibly significantly longer than that). Many have pockets where you can put the little drainage bulbs that you end up with for a while after surgery.
These camisoles are really, really nice to have. Many hospitals give a couple to you before you go home from your mastectomy, but ask your surgeon whether this is the case - because if they don't, you want to get a couple before your surgery, so that you will have them to go home in and to wear for the next couple months. Your insurance may cover one or two - it's worth calling to ask. You can get them wherever you get mastectomy bras.
5. They tell you that you may have the drains in for 7-10 days. What they really mean is 'If you are lucky you may get them out in 7-10 days'. You have them in for as long as it takes for your fluid output to drop to the level where your surgeon feels you are less likely to develop seromas. More on those later. Most surgeons put this critical output level at 30cc's per side per 24 hours.
You may drop to this level in 7 days - but there is a good chance that it will take significantly longer. Whether you drop to that level or not, they will take out the drains at the 3-week mark, due to concerns about possible infection.
Learn from my mistakes here. Be aware that if there is too much suction/vacuum on those drains, your body may interpret this as a demand for more fluid. So you don't really want to 'strip' those tubes too often and/or get those bulbs squeezed as tightly closed as possible, especially after the first few days. This was an area where my taking the nurse literally and being very careful about doing 'what I'm supposed to' turned out to be a disadvantage. You want some suction, but not too much.
Moderation, as always, is a good thing.
6. Once they take the drains out, especially if it took a long time to get down to the 30cc level and/or if you haven't done so yet, it is a good idea to have compression around your chest and sides when possible. This will help minimize your risk for developing seromas.
A seroma is an area where the tissue under the skin was excised (cut out) and a pocket is left where the tissue surfaces have not yet knit together, and fluid (largely plasma, white blood cells, lipids, etc) collects in that pocket. If you think of your skin as being like the surface of a water bed, that will give you some idea of what it's like to have seromas - if loosely filled, you get that sort of tidal washing-back-and-forth effect, and if tightly filled it gets much more firm and swollen. Either way, they feel somewhere between weird and uncomfortable, and you can end up with more scar tissue if they hang around for long, so you want to avoid developing them if possible.
7. One way to maintain gentle pressure during the day is to get a really good jogging/sports bra - one that is not too stretchy, has no seams inside that might irritate your tender skin/incisions, that preferably has high sides and wide straps, and that doesn't have molded cups. You want a nice firm, even pressure all around the front and sides.
There are also compression products that you can wear at home. One recommended by my physical therapist is Swell Spots, which are stitched in such a way as to encourage fluid drainage. She recommended the one designed for use in thigh/groin treatment, but if you put the dipped part under your arm - and get two if you have a bilateral mastectomy - that works well for our purposes. You have to use your ingenuity as far as figuring out how to keep them on. Your sports bra might keep them on, for instance. I use the large elastic band they gave me for around my abdomen after my hysterectomy, which works fine... or you could sew elastic between the two in back, and then sew a velcro closure on in the front.
8. If your seromas get too full and uncomfortable, you can go to the doctor and they will aspirate the pockets of fluid with a needle. Generally they will choose a spot for the needle where your chest is numb, so that the process feels a bit weird but not painful. Unfortunately, this can work sort of like breast feeding - the more they take away from your body, the more fluid your body puts back into the area. So the needle aspiration can provide relief, but it can also make things worse in the long run. Try the compression thing (see above), it may help keep that re-accumulation down.
There is a concern about infection when they do the needle aspiration. You can't do much about the germs that the needle might introduce into those pockets, but you can try to keep the injection area from becoming an open gateway for bacteria. Be sure to protect the area from germs - another good time to use that antiseptic.
9. During surgery, they mess with your muscles (even if the surgeon doesn't cut into them, they still are traumatized by the change in weight and etc.). Depending on the size and density of your breasts, the loss of tissue can affect your center of balance and how the muscles are pulled on. You also may have lymph glands excised. That is a lot of insult to your underarm/axillary areas, and they can react in lots of uncomfortable ways, including 'cording'. Cording is when the muscles in and/or under your arms and in your chest spasm. If you've ever woken up in the middle of the night with one of those excruciating muscle pulls in your shin ('shin splints' or 'charlie horses'), you have some idea... except that 'cording' doesn't go away in a few minutes.
Sometimes your physical therapist can help massage these cords and relax them a bit, sometimes antibiotics help, sometimes hot and/or cold packs can help a bit. Mostly we're talking pain meds and time, unfortunately.
10. They also cut through a lot of nerves. For many this causes numbness, but it can also cause nerves to fire off randomly in various areas. For me it was a feeling of intense burning under my arms and a feeling as though I had been kicked in the center of my chest by a very large and enthusiastic horse. This may go away on its own, but if it doesn't, something you can do is to vigorously-but-gently rub the area with a nubby (clean) washcloth several times a day. This gives those freaked-out nerves something to focus on, I guess, and desensitizes them. This really, really helped me. Thank goodness.
That's all the stuff I can think of for now - I'm sure there's more, but I'm tired out. That's another thing to keep in mind; make sure you pay attention to your body's messages. Too much hand/arm work - lifting, pulling, etc. - means more fluid for those seromas, and less energy for healing.
I hope this all helps someone out there. I wish you all the luck in the world, my sisters, and all the best.
Time for a nap!!
~my surgeon, from her surgery report
After all, I had made it clear that I knew I would eventually go on some form of hormone therapy (we won't talk about my flat refusal of chemo and radiation, although I consider my reasoning to be sound on this issue). I simply wanted to make one change at a time, since my history is one of adverse reactions to drugs, and I didn't want to confuse the side effects of one treatment with another. That isn't recalcitrance. That's just knowing oneself, and a desire to be in control of one's own life.
But, being me, I looked up the exact definition of the word.
Main Entry: re·cal·ci·trant
Etymology: Late Latin recalcitrant-, recalcitrans, present participle of recalcitrare, to be stubbornly disobedient, from Latin, to kick back, from
re- + calcitrare to kick, from calc-, calx heel
1: obstinately defiant of authority or restraint
2a: difficult to manage or operate, b: not responsive to treatment, c: RESISTANT this subject is recalcitrant both to observation and to experiment — G. G. Simpson
**from the Merriam-Webster OnLine Dictionary
My son comes by his Asperger's Syndrome through a nice straight line from his grandfather to me to him. With me, one aspect of this is that I tend to research the heck out of things, because I want to be prepared - good or bad, I want to know what to expect. I pretty much know by now what I can handle; if I know it's coming, I feel I can endure it.
Before the hysterectomy I did my research, and the doctors did a fair job of telling me what to expect in terms of pain and functioning level and time to recover. I set my head at it, got it over with. Everything went more or less according to plan; except for a brief bout of infection, I got up and going fairly quickly, with only a modicum of depression and boredom and fuss. Three weeks or so and I was more or less functional again. One weird pulling muscle, and of course the hot flashes, but other than that I was back to normal within a month.
No Big. Wish I'd done it a decade sooner, reclaimed my energy and one quarter of every month. I am Supergirl.
Everyone said the hysterectomy is a harder surgery than the mastectomy. Reports from friends who had had mastectomies confirmed the surgeon's reports of a 2-week period of relative inactivity/recovery time. A kind survivor showed me her mastectomy up close and personal - I was actually reassured by that, it didn't look nearly as scary as I had thought it might. People talked about numbness and the drains and weakness in the arms and lymphedema and having to do exercises. I was prepared for that. I suspected that having a second major surgery in as many months would probably make the mastectomy a bit harder for me than the average. I might be more tired than most, take a bit longer to heal. I was prepared for that, too (for some odd reason, my surgeon didn't seem to be equally prepared for this likelihood, but that's a different story).
I knew that I probably wasn't completely prepared for the possible emotional impact of the loss... I have never had a friendly relationship with The Girls, so I didn't feel that I would particularly mourn their loss, but you don't really know how you are going to feel about an experience you've never had before, so I wasn't sure about that. I was prepared to unexpectedly mourn their loss (I haven't felt that yet, and may never do so in more than the nostalgic way one marks the loss of youthful skin and hair and teeth as one gets older).
But I thought that I had most of the contingencies covered.
I wasn't prepared. I wasn't prepared for how much harder it was to come out from anesthesia. I wasn't prepared for how thoroughly exhausted and sick I felt. I wasn't prepared for the toxic reaction I had to the antibiotics, which had me first thinking I had a bad flu and then made me increasingly dizzy until I was fainting when I stood up or tried to walk. I wasn't prepared for the drains to stay in for three weeks and to still be producing too much fluid by the time we were forced to take the drains out (I don't feel prepared for the needle aspirations that may be a result of that, either). I wasn't prepared for the pain; incision pain, of course, but I wasn't warned about the awful 'cording' - basically one of those horrible muscle spasms/'charlie horses' that you can get at night in your leg, but all across your chest from under one arm to the other, and it's there all the time instead of for a few minutes. I wasn't prepared for the level of mutilation - the huge swaths of folded swollen skin, the huge lumps and pits in my chest that show through my shirts/dresses, the huge (and permanent) lumps that suddenly appeared under my arms that keep me from being able to put my arms straight down at my sides.
Most importantly, I wasn't prepared for the burning, stabbing nerve pain that has stubbornly continued unabated since the surgery. Certainly I wasn't prepared for the nurse to tell me that the pain may very well be my 'new normal'.
So at first I was too exhausted and sick to write, and then I was too depressed and upset to write.
But I saw Dr. Bouncy yesterday, and although I have reason to believe that he is at times unrealistically optimistic about everything, I see no reason to believe the nurse's word over his at this point - and he is hopeful that the pain may abate with time.
Who knows. If the physical pain gets so that it isn't so bad, I may work up the energy and spirit to get used to having weird lumps in my shirts/dresses - certainly at this point I have trouble imagining voluntarily offering my poor abused body up for surgery on anything that isn't absolutely life threatening, although of course that could change if I turn out to be one of the lucky 5% that make it beyond the 5-year mark.
So that's the story. Physical therapy starts at the end of the month, and I am told that this may help with the 'cording' and the sudden weakness and clumsiness of my right (writing & spinning) hand.
Onwards And Upwards.
The surgery went well enough medically, if not aesthetically. I unfortunately had a very bad reaction to the antibiotics - which I thought for several days was the flu, so it took a while and increasing symptoms before we figured out the source and stopped the medication. Since then I have been feeling considerably better, and have been slowly recovering.
I had been hoping to recover more quickly, and to be less laid low by this surgery, but I guess the body does not take well to having two major surgeries in as many months. So I must take it slow and deal with the frustrations of the many limitations... again with the no driving and no spinning and no picking things up when I clumsily drop them (and those ballroom dancing lessons may have to wait...)!
Pathology report is back - unfortunately, it pretty much confirms what we already suspected, which is that it's an agressive grower that has spread throughout the lymphatic system and body. It will take a while for me to be able to have a talk with my oncologist about what that means for my treatment - I assume nothing pleasant.
But in the meantime, I will have a little while to just sit and recover, and to look forward to Shepherd's Harvest Festival, where I will have the chance to spend a bit of time with my fiber friends. See you there!!
Yesterday morning I went to the plastic surgeon, who whipped out his Sharpie and went to work drawing dashed lines and interesting star patterns on my breasts. Which wasn't always comfortable, as he got at various bits by twisting my girlish bits around rather extremely... but that isn't why I started to pass out. And it wasn't anxiety about the coming surgery, either, as he solicitously assumed.
It was, as my brother-in-law so poetically put it, the longish period of 'huffing the Sharpie fumes'. I'm still a bit woozy.
I know this because as my PS warned me, these lovely 'cut along these dotted lines' were swiftly fading away by nightfall - considerably before any cutting was due to happen. Of course, my PS was thinking they would fade with baths and two days of accumulated skin oils. But I am Special, so 8 bathless hours or so seems to do the trick.
So my husband - a dear, dear man but NOT an artist (he failed 'scissors' in kindergarten, and hasn't gotten much better since) - had to try to trace the PS' artistically drawn lines, which he sort of did. I didn't pass out this time, but this was partially due to heightened anxiety and partly due to my preparedness for the rapid action needed to snatch the marker out of my loving spouse's hand before he accidentally directed Friday's surgeon to cut off my right arm.
I woke up this morning, and soon became aware of two things.
1.) You know those drawings of the old naked women with their breasts hanging down to their knees? Well, weight loss and newly-acquired menopause have arranged things so that when I am laying on my back and leaning slightly to one side or the other, one breast is smooth and familiar, but the other acquires a sort of, um, crushed-velvet appearance on one side that is not what one would normally think of as sexy. I mean, what one would think of sexy if it didn't have great black wobbly marks all over it. Well, if it didn't have great black wobbly blurry marks all over it, and charcoal-gray smudges everywhere else.
Anyway, it occurred to me that as of tomorrow, I will not have to worry any more about becoming the old woman with the scary dugs hanging down to her knees. I will have to worry about being the old woman with the saddle bags hanging down to her knees, instead. Yay!!
2.) See the above bit about the smudges and blurriness? Well, that is the bit that the PS hadn't predicted. Which is that during the night, my lines not only transfered to my bra... they also transfered to my arms and hands and the other breast, and everything else they touched. They also sort of ran a bit, like badly applied lipstick. So now the entire upper half of my body is covered with gray and black smudges, lines, and blotches, and the breasts are sort of a uniform gunmetal color with big vaguely-drawn lines on them.
I'm afraid to take a bath, for fear of washing the lines off entirely... but not anxious to go into the surgery room looking (and smelling) like an enthusiastically made-up chimney sweep from an amateur production of "Oliver Twist", either.
So I have to trace over those lines again... and again tonight, and again tomorrow morning.
Assuming that by then the lines will be visible against the background color...
**(Read some good books, improve your vocabulary. Or go the lazy route and look it up in the dictionary - that's what the internet is for.)
Ever since my diagnosis, my fasting blood glucose levels have been been raised by a good 20 points or more, which is Not Good. In people with bad insulin levels/insulin resistance levels, stress hormones can significantly raise blood sugar - and even with the low carbing, my system has not been able to compensate, especially since the surgery (which also is a stressor that tends to raise blood sugar levels).
This morning I went to my pre-op exam, and my blood glucose was at 126 - which officially puts me somewhere between serious pre-diabetes and diabetes outright.
The silver lining here is that I was given a blood glucose meter, which I am using to see what exactly is going on as far as foods, supplements, and habits that either support or sabotage my efforts to control the glucose levels.
So far I find that a small amount of jicama played havoc, but that bacon and chicken with herbs are fine and evidently so are asparagus w/mustard sauce and blueberries w/yogurt.
Also Scott seems to lower my blood sugar - possibly by lowering my blood pressure, as well?
Well, at least that's how I choose to interpret the coincidence of his arrival home from work and an hour later getting my lowest reading of the day!
(No, you can't have him, he's mine...)
Of course, I don't have pretty necklaces, and my neck is too thick (fat) to wear most of them anyhow, but the point is that if I wanted to and could find ones long enough, I could wear them without highlighting the fact that the rather-too-obvious bits are heading swiftly southwards.
And did I mention that my shirts won't gap any more? And I'll probably go down at least one shirt size... yay? Oh, and if I lose (a lot) more weight, I'll be able to wear the kinds of dresses I like without looking quite so silly (as long as nobody looks at the ankles).
In any case, I am determined to see the silver lining. I'm not losing the girls, I'm gaining... ummm... I wonder if I could get the plastic surgeon to draw the dotted lines in celtic spirals? That would be pretty cool.
See all the wonderful benefits to having cancer? I bet you want some, too - but you can't have mine, you have to get your own. So there.
Anyway, he was very supportive and encouraging, and told me that he thinks that my original instincts were spot on for someone in my particular situation. Mom and I were both reassured, and I think are both feeling more comfortable with this month's treatment plans. It doesn't hurt that I have a friend whose mastectomy was 'designed' by the same doctor, and she has nothing but good things to say about the results of her surgery and the good doctor himself. Thanks for the recommendation, Annie!
AND I got my DEXA scan results. More good news - my dad not only handed down his genes for giant feet and blocky hands, but also his genes for heavy bones. I always wanted that lovely delicate build that many of my friends had - but I am giving that envy up for good. I LOVE my solid peasant ancestors, thank you very much! Even my hip with the cancer in it has a T score on the positive side of 0. So whatever treatment I decide on for that, I will be starting from a great baseline - Yay!!
It was a Good Day.
Also my sister had to have an endometrial/uterine biopsy last week, and it will be a while before we get the results on that. So we are generally holding our breath a lot around here. Perhaps we are restricting the oxygen to our brains a bit too much...
In the meantime, I am supplementing with D3 (I am VERY low in D), E, CoQ10, ground flax seeds, and trying to figure out how to get in calcium/magnesium without also getting the unpleasant intestinal issues that keep me up all night.
Does anybody know of something yummy to do with sardines that doesn't *also* have something to do with crackers or bread?
There is a huge health-care threat flying under the radar right now - see below - and our opportunity to respond is rapidly shrinking. Please take action now, if you can!
(And if you haven't been tested already, please get tested asap)
Vitamin D Council Newsletter
Friday the 13th, February, 2009.
On Friday, February 6, 2009, Medicare announced its intention to stop paying for vitamin D blood tests in many Medicare districts. If this rule passes, the change will quickly extend to all Medicare districts. Private insurers will then follow suit, denying payment for vitamin D blood tests, even for the diagnoses of vitamin D deficiency. Medicare proposes to pay for vitamin D blood tests for only few limited indications, such as rickets, osteomalacia and chronic renal failure.
Draft LCD for Vitamin D Assay Testing (DL29510)
This rule change flies in the face of an enormous amount of research, some of it published in the last few months. For example, several weeks ago, the British Journal of Cancer reported that in men with prostate cancer, those with highest vitamin D blood levels were 7 (seven) times more likely to survive than were men with the lowest levels (RR 0.16). If any media stories appeared about this amazing discovery, I am unable to locate them.
Association between serum 25(OH)D and death from prostate cancer
Apparently, Medicare's reasoning is not understood in England. A week ago, researchers at Oxford discovered the long-sort genetic link vitamin D has with multiple sclerosis. According to Medicare's new rules, if you have MS, or don't want your unborn baby to develop it, or have a family history of MS, or just don't want to get MS, you will have to pay for the blood test to decide how much vitamin D you should take to optimize your 25-hydroxy-vitamin D level.
MS link to vitamin D deficiency hailed by politicians as giant leap forward
If you are pregnant, and want to reduce your risk of caesarian section by four-fold, you will have to anti up.
Low vitamin D may increase chance of a caesarean delivery
Patients with diagnosed colon cancer are 48% less likely to die if their vitamin D levels are high. If you have this dreaded cancer, how do you know if your levels are high?
Vitamin D May Promote Colon Cancer Survival
If you fear getting demented, pay up. Recent research indicates people with impaired cognition are twice as likely to have vitamin D deficiency.
Vitamin D is mental health aid
If you have Parkinson's disease, or don't want to get it, get our your wallet.
Study finds link between low vitamin D and Parkinson's disease
Even the American Academy of Pediatrics recently stated,
"Given the growing evidence that adequate maternal vitamin D status is essential during pregnancy, not only for maternal well-being but also for fetal development, health care professionals who provide obstetric care should consider assessing maternal vitamin D status by measuring the 25-hydroxy-vitamin D concentrations of pregnant women."
Prevention of rickets and vitamin D deficiency in infants, children, and adolescents.
That is, the American Academy of Pediatrics now suggests vitamin D blood levels be measured in all pregnant women. Expectant mothers, concerned about their baby's "fetal development," will soon have to pay for the only test that will do what the American Academy of Pediatrics now advises, tell them if their unborn baby is vitamin D deficient.
I could go on and on. Now is the time the Vitamin D Council needs your help. I want you to do two things:
1) Email the person taking comments, Medicare's Ms. Gina Oliveri, at Gina.Oliveri@ugswlp.com, and tell her your feelings about this proposed rule change. Include your reason why this test is crucial for the health of Americans.
2) Send an email to your Congressperson and ask them to investigate Medicare's "Draft LCD for Vitamin D Assay Testing (DL29510)." Tell your representative not to let this happen. Simply click on the link below, fill in your state and zip code, go to your Congressperson's website, and then click on "contact."
Write Your Representative
Of course, this rule change will help the finances of the Vitamin D Council, as it will increase sales of ZRT's in-home Vitamin D test, which generates ten bucks per test to us. However, this rule change will end up killing Americans. We cannot let it happen.
I can't stress enough how important this is for the public health of the United States. On February 21st, in just nine days, Medicare will not allow any further input by citizens, so email both Gina.Oliveri@ugswlp.com and your Congressperson right now.
John Cannell, MD
The Vitamin D Council
9100 San Gregorio Road
Atascadero, CA 93422