Really? Three Weeks?

My dashboard claims that the last time I posted was the first week of July. That doesn't seem right, but I note that the last few posts were on my Knot All That blog, and those were kind of lazy ones that mostly involved YouTube.

Oops.

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.

Eww.**

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...

Living Dangerously, My Way

So I'm enjoying my doctor-ordered Supplement Fast... in which I still have to get to eat flax seed and strontium citrate but also get to refrain from taking the large handfuls of pills that I've been choking down four times a day.

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.

To B Or Not To B (Or, "I Told You So, So There!")

It turns out that I'm not stupid or neurotic (at least, not entirely)...

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!!

Resources

I plan to make a list of (hopefully link-able) resources for breast cancer patients, to make available on this blog.

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!

Now Is Better Than Later

"They could find a cure in the next couple years, so you shouldn't give up."

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.

Things They Don't (Necessarily) Tell You About Mastectomies

I like to be prepared for the Big Stuff. I don't deal well with surprises, so I am not happy when doctors optimistically hope that everything will go perfectly and decide not to tell me the possible downsides because they don't want to worry/scare me. What scares me is when something happens - as it nearly always does - and I don't know what it means. I want to know what might happen, so that I can either avoid it, deal with it, or dig in and endure it when it comes.

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!!

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.)