Strong Minded, Independent... Whatever

"She has been very recalcitrant in terms of going on any further systemic therapy,"
~my surgeon, from her surgery report

At first I was affronted. That wasn't accurate, and therefore wasn't fair.

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

Pronunciation: \-trənt\

Function: adjective

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

Date: 1843

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

see UNRULY


Well.

Okay, then.

**from the Merriam-Webster OnLine Dictionary

Supergirl Gets Her Butt Kicked

I don't like surprises.

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.

Brief Update

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!!

On Being the Canvas

Okay, I am sitting here, covered in scribbly lines of black. I am Abstract Art (as opposed to being abstracted, which is my normal state**).

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.)

The Hits Just Keep On Coming

Okay, this is just a sort of mini-whine, but jeeeeeeeez...

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...)

Envy and Blind Optimism

I JUST (about 3 minutes ago) got a call from surgeon's nurse, so now I have a surgery date - the morning/early afternoon of the 27th. Both girls going. I am ignoring the 'surgery' part, and instead paying attention to the 'no gap in my shirt placket, and now I can wear pretty necklaces' part.

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.

Yay!!

I went to see my plastic surgeon today, in preparation for the coming mastectomy. He is a lovely, lovely man - well, at least, he is a man who is currently blissfully in love with his new baby girl, which means that he is a contagiously happy man. Close enough for me...

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.

Tomorrow, taxes...

Blah...

Sorry I've been gone a while. Been a bit depressed lately, as my surgeon disagrees with Dr. Bouncy on just about everything, including his assessment that the tumor is shrinking. I can't decide which doctor is right - the darned thing seems to change daily, shrinking and growing like a puffer fish. Since treatment is in some part decided by this issue, it's a bit scary... unfortunately there is little we can do to accurately scan this monster for size, so we won't know for sure until we take it out - and then we won't really know, because we never got an accurate idea of exactly where it was from biopsy to extraction.

Frustrating.

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?

Alert

Vitamin D deficiency has a PRIMARY link to *all* cancers, including and especially hormonally-linked ones such as prostate and breast cancer. It is also linked to other serious diseases - MS, heart disease, autism, etc. Information can be found on the Vitamin D Council website, or if you want a good video to start with (takes about 30 minutes, but you get the idea within the first 10 or so):

http://www.youtube.com/watch?v=1PsyaYNX1dw

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)

~Eileen

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Vitamin D Council Newsletter

Friday the 13th, February, 2009.

Emergency!

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

On Today's Visit With Dr. Bouncy

With apologies to L. Frank Baum and his masterpiece:

I'm Melting, MELLLLLTINNNGGG....


(Happy Dance, Choirs Singing, The Peasants Rejoice)