And if I don't die or worse, I am going to need a nap.

"Those whom the gods would make crazy, they first make mad."



Sometimes I think cancer, and cancer treatment, were invented by some mischevious, minor god, to turn me into Job.

The latest round is the third reoccurance of brain metastases, this time tumorS. Multiple. What fun! So instead of having gamma knife surgery, which has relatively small side effects, except for cranial edema, I get to have whole brain radiation. Ooooo, goody. This makes eleven, count them, eleven, cancer treatments. Surgery, chemo, radiation. Hormone therapy. Chemo. Gamma knife. Chemo. Gamma knife. Chemo. Now WBR, and chemo number five. Don't you wish you were me?

Whole brain radiation, in particular, is designed expressly for me. I really dislike being nauseous. And I am very claustrophobic.

Very.

Soooo. The start? A several hour session where they fit me with a mask. This, oh goody, is so they can lock me, by my head, to the table, so I won't move during the radiation. Let's do dental surgery, and stick the whole deal into a cave, and yay! We can have all my phobias together! At once! They also wanted to strap down my feet. Oh, I'll hold still, believe me, if you DON'T tie my feet as well, thanks.

As it went on, the anxiety decreased, but didn't go away. I would pretend it didn't bother me, but my heart rate would double. And some days, my chin would quiver against the mask. Scared? Me? This is how the brain of a claustrophobic works: "OK. If the power goes out, AND the backup generator doesn't work, I've learned how to unhook the mask, and I will unclip it. If the machine breaks down, and overcooks me, I will unclip the mask, jump down (table is five feet off the deck) and get under the table." None of this is faintly likely to happen, but tell it to my reptile brain.

Luckily, the actual radiation was about 40 seconds, 20 seconds per side. I would count. 18 - 20 seconds per side, dependent on how anxious I was, and therefore how fast I counted. I always felt like I could smell burning hair, but the next to last day I realized it was probably whatever mysterious and funky plastic the mask was made out of. Carcinogenic, no doubt. Strangely enough, I am not particularly worried about secondary cancers.

The side effects are also designed for me, to drive me nuts. Nausea, which is generally not controlled by meds...because it's not caused by my stomach, it's caused by my brain. Burns on my head and ears. Burning on the skin INSIDE my ears, so they itch all the time. Hair loss...

And, instead of like chemo, where your hair all falls out in one dramatic, cartoonlike flump, it's patchy! Of course it started falling out on my crown. I looked like a mangy mouse. wertperch. Shave it all off. NOW. I look far better bald than with male pattern partial baldness, it turns out. Oh goody!

And absentmindedness.

What were we talking about?

So I start chemo number umpty lump next week. Lessee, I've done it 38 times. Is there some sort of medal for this? If I hit 50, could someone please give me a million bucks? And wertperch and I work through mounds of paperwork. And the lucky fellow, he gets to familiarize himself with not only our arcane pension plan, medical system, insurance, but also US taxes! Social security! Trusts and wills! Medical powers of attorney! What fun!

What were we talking about?

Still. I mostly do not feel sorry for myself, there are nastier diseases, I can think of several. MS. Lou Ghehrigs. Parkinsons. Glioblastoma. I have friends dealing with each.

Meanwhile, the three of us laugh a lot, and clown. wertperch is nearly as absentminded as me, and we walk around the house going have you seen the...thing....for the....thing? What was I doing? Why did I come in here? Why did I open a new browser?

And still, I would rather take this bullet than have someone else I love have it. As much as it is unpleasant, I like it 20 times more than having Tessie have cancer.


Be well.
Love,
grundoon

Sooooo.  I went last week and had yet another MRI (my eleventy-hunnerth) and then an afternoon visit to my oncologist.  Following a week of out-of-the-blue headaches.  Sure enough, I've got new stuff - tumors - going on in my brains.  Baby squid!  OTOH, my intuition is working just fine, thanks very much.

Coming up -
Saw the neurosurgeon Tuesday
Get whole brain radiation, for 10 sessions - I assume 10 days? - starting next week
Get PET/CT scan
Visit oncologist
Possibly start a new kind of chemotherapy, potentially all the time. 
 
      Don't you wish you had your own personal medical 
      physicist?

It's not so good.  I don't currently have the right words. Fairly spaced out is probably the best description.  Gobsmacked?

Tess is up at Bob's in Washington, with Georgia visiting up there.  I spoke to Tess briefly Wednesday, without a lot of detail.  Her 13th birthday was the day before she left last week, and I got the news the day before.  I think neither K nor I could face it then.  We are going to talk to our local hospice next week, not because death is imminent, but because we want to know what we might be dealing with here.  Everything is speeding up.

I will try to write in more detail on the blog, for those that want the details.  I am doing well, Kevin is currently looking a bit like a deer in the headlights.  

Love to you,
Chris

Telling the children

In reponse to a question from another Metastatic Breast Cancer Babe, about what to say to her kids.

I was diagnosed with cancer the first time when my daughter was six, less than three months after her favorite aunt had died of ovarian cancer at age 44. My cancer was the opposite of your early stage cancer - Stage 3C, with lymph nodes involved (I found it myself from an enlarged lymph node), also under my collarbone, very aggressive cancer cells. We tried to keep Tess informed of what was going on, at a level that a six year old could understand.

My first recurrence was three years later, and since then I've been through three more rounds of chemo. We've dealt with two brain tumors (and two gamma knife surgeries) and most recently bone metastases. The cells have been decent enough so far to stay out of my liver and lungs, the little bastards. Total = one mastectomy, seven weeks of daily radiation, two gamma knife surgeries, and four rounds of chemotherapy. Nine cancer treatments, not including such minor details as surgery to install a Port-o-cath. Twice. Blood draws. MRIs. CT scans. Blah, blah, blah. Every time, we ask Tess what she wants to know about it. She is now twelve, and mostly does not want to hear a lot of details. TEENAGER.

So I ask a lot, a lot, a lot of questions. "Do you really want to know?" is the most useful one. I also offer information. I don't elaborate if I don't get a response. The messiest one recently was when she asked what the pink thing on the fridge was, and I explained about a POLST form, and what a DNR was. It was a mistake not to say - are you sure you really want to know?

You never know what they are thinking, nor what they fear. Tess kept coming in, initially, and checking on me, when I was first diagnosed. After five months, we realized that it was because her aunt, from her perspective, had died with no warning. Tess saw her aunt on Sunday; the aunt went into the hospital Monday. They first used the word hospice that night. The aunt never came out of the hospital, and died on Thursday...so Tessie's experience was that someone with cancer could be fine on Sunday, and die four days later. She was coming in to check on me, the way a mom does with a SIDS baby. She was making sure I was still alive. When she was six.

So my only advice is offer information anytime anything changes, but don't force information on them if they say no. And I prefer to give them slightly more than they want. If they ask a question, try hard to answer it, without the scariest bits. I hope this helps. It is one of the hardest parts, any time you are a cancer patient with children.

Love,
Chris

A short update...

Several people have asked me how it is going - the answer is, Same Sh*t, Different Day. I feel as though I've been here before, I go back and read my old posts, and I have been here before. At the end of chemotherapy, running out of steam, physically very run down, family sick of it as well.

Other than that, Mrs. Lincoln, how did you like the play?

I'm going to go off and make art. The hell with cleaning the kitchen or filing paperwork.

Love to all,
grundoon

How many is that now? Thirty-five?

BACK. I have been in the chemo cancer depression cave for a MONTH. I think it was the worst yet. Why is it that I don't want to talk to anyone during that cave time, when my brain knows it would help.

Five rounds of chemo down, one to go, as of this morning. That makes a total of....8 (ACT) then 3 years of tamoxifen plus 15 (taxotere and then abraxane) then gamma knife plus 9 (abraxane) then gamma knife plus 5 and what will be 6 of abraxane and Zeloda. How many is that? 37, going on 38 rounds of chemo. I'm going to get a gun or a saddle or something, and carve a mark for every round. Have Chem, Will Travel is the Name on Her Card....

Seriously, every woman who is coping with metastatic cancer in any form is wonderful, brave, an amazon AND a badass. Guts, grace, and grit. Me, I'm a schlemiel, but I know that I'm a good example for others, including my darling GliomaGirl

AND. Handmade bracelets or cancer survivors in my life are all half assembled on my craft table, durn it. I had no $$ to mail them, and was too blue for anything creative. BUT. I asked my doc for the next 6-8 weeks off (after I almost ran a stop sign...) so I hope to have more energy and less blues. And I want CC to come up and take me for a ride! I have the boots and the jacket.

Bone metastases are confusing. Lymph nodes are down - good - responding to the chemo. Two new bone mets visible -11 to 13 - bad? Could be good? PET scan measures glucose uptake, so it could be the bones rebuilding, but I'm not convinced. Little boogers.

Some chemo days I have had so many rescue drugs that I feel totally stoned, except with nausea. It's the weirdest feeling. Spacy, but not awful. Amend, ativan, aloxi, dexamethazone, THEN chemo. Now zophran. ...Sometimes I feel like we have all learned a foreign language.

And I'm finally almost OFF THE BLOODY STEROID! After almost 10 months. And my husband has not murdered me. This is good. I talk a lot WITHOUT artificial stimulants.

And a note to a metastatic cancer babe buddy -

I have too many hobbies, so you can have one of mine. I highly recommend soul collage if there's anyone teaching it near you.

Round 15? What kind are you having?

Hugs. It's do-able, it just isn't fun. I'm trying to get my head around the idea that for a while I will be doing chemo for 4-5 months with a break of maaaaybe 6 months or so...so it doesn't make sense to just try to get THROUGH it doing sudoku and jigsaw puzzles. I have to try to count it, and enjoy my life while I'm doing chemo, since it's taking over. Be all zen and shit - enjoy the moment. I never want to be all about cancer. Does that make sense?

The writer above is post-chemo, and is not to be held responsible for anything whatsoever. This is not entirely a joke - I'm considered hospitalized for the next two days, and I can't sign a contract - or if I do, I can go back and say, sorry, changed my mind, don't want that Westfalia after all, and you can't hold me to the contract because I was a chemo babe. Weird.

Love to all.
Bald o'Grund o'Toole

Bone metastases, henna head, and the senses

Dearly beloved,

So when you last rejoined me, I was waiting to talk to my oncologist about the latest PET scan. I get copies of things like radiology reports these days, but perhaps there's a reason they generally don't release these to patients - I almost always interpret the news more harshly than my physicians do.

The latest one was a real mixed bag - all the new lymph nodes were smaller in size - responding again to the same chemotherapy - but some of the bone metastases were up, and some were down. In addition, there were two new ones, putting the total count up from 11 to 13. Eight in my spine, one in a rib, one in each hip... and now another rib and another spinal.

NB - I am more freaked out by bone metastases, currently, than by brain stuff. This is probably because the brain tumors are old, and the bone mets are new. But my doctor says he's more concerned about brain mets. And he is, over and over again, the expert. I hate worrying about my personality or ability to think changing, it's true. Even more, I fear being trapped in a body that has completely failed. A wheelchair. A broken hip. Not being able to draw, to dance, to walk...I know it's trite, but I don't really fear death - I fear a cage. Or call it being buried alive. I've told Kevin, if I am alive, but non-responsive, do not wait a month. Wait three days. Imagine I am trapped inside, and that all I want is for you to let me go...

I know, harsh. We don't talk about this, in this Happy Face culture, but think about it. What do you really fear? Have you communicated this to your loved ones? If not, DO. I have a mutual pact with another cancer survivor, that we will unplug each other if it comes to that. He fears the cage as much as I.

OK. Back to the main topic.

Wonderful Dr. L exlained that they don't use PET scans or bones scans to measure progression (worsening of the disease). All a PET scan does is measure glucose uptake. So an increase in uptake CAN be cancer cells - but it can also be a bruise repairing itself, or the bone repairing itself. Darn those little osteoclasts and osteoblasts anyways. So some of the bone mets were up, and some were down. The response to the chemotherapy is better interpreted from the lymph nodes.

So. Good news, and I finish this chemo. We know I am still at least somewhat responsive to this chemotherapy, and we can continue to use it. Good for me, since I lobbied heavily for it, mainly so it slows the loss of nerve endings in my hands and feet.

_____________________________


On the up side, someone asked me a REALLY good question recently. Our divine Miss M, a young dancer who I would identify as an old soul if I believed in that stuff, asked me what HELPS endure the cancer and the treatment. My first, off the cuff answer was touch.

Part of the challenges of cancer treatment is, and you probably knew this, constant physical suffering. I go to something obscene like anywhere from 1 to 5 doctors' appointments per WEEK - and they always ask if there's pain. I think about it, and say, yeah, sorta. And then they ask, on a scale of 1 to 10? I usually say 3 or 4, since I know if I say 6 or above they will have to try to "cure" it. But the truth is, there is pain all the time. I just am oblivious to it, to the extent I can be. My pain tolerance has always been high, and I suspect now that it's close to being off the charts. But fighting pain is exhausting.

And, my body turns into what I'd have to describe as a rag bag. Not only pain, but Other Unpleasantness. Reflux. Nausea. Skin lesions. Wounds that won't heal. Other digestive malfunction that I will let you imagine for yourselves. Swollen feet, and lymphedema, which is pain and swelling in my right hand and arm. Neuropathy in my feet, which in English means constant pins and needles, or when it gets bad, burning. As in, I will happily put my feet in a bucket of ice for 20 minutes if it will get me two hours of relief, or let me fall asleep. Trivial each in their own, possibly. When you are enduring most of them all the time, and expect ALL to get worse over time, perhaps not so trivial.

So it's easy to forget that a body can feel pleasure as well as pain and discomfort. This is where feeding the senses comes in. TOUCH. SMELL. TASTE. Cooking with fresh basil, trying to differentiate a "melon" overtone from a "citrus" one in a champagne - and a red wine DH would love - overtones of "chocolate, espresso, and porter". The stout drinker's wine...

This has been a great week for the sensual reminders in other ways. Several people took me out to lunch for my birthday. Gorgeous Thai food, gorgeous american fusion in St. Helena's, between red wine and champagne tasting. I went also, lush that I am, to a tequila tasting, which is great because my stomach won't tolerate spirits. But, for some strange reason, it doesn't mind wine, hard cider, or agave - I can drink tequila (in small amounts) and margaritas. Apparently it can differentiate plant and grain spirits, smart gullet.

And the divine Miss M and Tess hennaed my baldy old head on my birthday, and it's the sort of thing that puts me into a happy semi-coma - head rubs bring out all my extant cat senses. I must, at some point learn how to purr.

So there's the advice for the week about your friend who is dealing with a chronic disease - what feels GOOD? Then go for it. A foot massage, a head rub, a wonderful dish, a glass of champagne. Feed the up side of that bodacious bod.

Love to all,
grundoon

And now for something completely different

Dearly beloved,

Not really anything all that different. Just the latest update on the cancer treatment. Fourth bout of chemotherapy, eighth treatment. Surgery, radiation, two gamma knife surgeries. I'm going to run out of fingers to count on fairly soon.

This chemotherapy is not typical. By far the worst round was the first one, and it was the reaction to the Zeloda - a bone med. This most recent round was the third in a series of six, and I tried really hard to take it easy over the weekend. Amazingly, it worked, and I had a fairly easy day yesterday (day 4), in spite of the fact that I did ballet in the morning, went to work, and ran errands. I also took an hour of down time between ballet and heading to my office, which I don't usually do. I am almost getting the hang of this after five years - sitting still has never been my long suit.

So I'm now half way through this chemotherapy. I'll have another PET/CT scan in the next week or so. If I'm responding (cancer visibly going away), we finish this chemo, which will go until May 3, and then I get a break for a while. If there's not much change, I'll switch to a different chemo, probably Xometa, which is an oral chemo drug. If it looks nasty, and the cancer has progressed, I'll go on two - Xometa and Gemzar. More likely to get a response, but more side effects. Let's hope the PET scan looks good.

The most recent PET scan had one anomaly - the bone stuff was pretty consistent in glucose uptake, except for one, in my left hip socket, which was much higher than all the others. My wonderful family practice doc asked the right questions, and we realized that I had taken a really hard fall the week before the scan, and landed on my left elbow and knee - one the sidewalk outside of the grocery store. Very dignified. (And tore a hole in the elbow of my favorite cashmere sweater, dammit.) But the hip socket, we hope, was just a bruise from the fall, rather than another bone metastasis. From what I understand from the Metastatic Breast Cancer Babes, hips tend to be the place where you feel pain, because of the weight bearing. So I'm curious to see if the numbers go down, particularly that one.

I also saw my neurosurgeon yesterday, and that is mostly good news. Biggest one is that I can wean off of the damned steroid! Hurrah! He and I talked about it, and apparently when I get down to half a mg (I'm at two) I'll switch to hydrocortisone, or something? As one doctor friend pointed out last summer, my pituitary has apparently forgotten how to work, and needs to be noodged to start working again before I go completely off of the steroid. Amongst other things, I remember back in December when I was decreasing the dose, and there's definitely elements of withdrawal, much as I hate the side effects. The neuro said if I decrease too fast, I'll feel like hell. His words, which was pretty funny. Out of character.

Why do cancer docs get more human as they treat you? I thought this guy was a pretty cold fish the first few times I met him - young, handsome, a neurosurgeon (no ego there) and gay as a tree full of monkeys. He didn't seem to have the vaguest interest in me, although apparently, like everyone else on the world, he liked Kevin's accent.

But i managed to break through the facade on this visit. I made a wild guess, and asked him if he was the one in the practice interested in architecture and design. He lit up, and said yes, he's been remodeling his house here in Sac for years. I laughed, and said that Metropolis magazine was not the most common doctors' office waiting room reading. I also got to have my vitals taken by Sergio (unprouncable last name), from Russia, whose accent I want to steal. I guess I spend so much time in doctors' offices that I have to take my fun where I find it. It also turns out the neurosurgeon is mostly unavailable because he is only in clinic two half days - all the rest of the time he's doing surgery. Can you imagine spending four days a week cutting people's skulls open? I can't.

Love,
Chris

One day I will step out of my body, and burst into bloom...

It has been a really rough couple of weeks. I had the PET scan about 3-1/2 weeks ago, and got the results a week later. I jumped right into treatment again, starting chemotherapy two days after seeing my oncologist.

However, the hard truth is that this cancer is progressing much faster, and in a worse way than Kevin and I had hoped. I only finished my previous round of chemo in June of last year. Since then, I've managed to develop one brain metastasis, and a host of bone mets - spine, one rib, and hip bones.

The physical reaction was pretty awful. The bisphosphinate (Zeloda) can cause a "flu-like reaction", and they weren't kidding. High fever the first day, and lots of aches and pains. The single worst reaction to chemo that I've ever had.

Still, I could handle the physical stuff, I think if it weren't for the emotional baggage. We generally hope for the best, and plan for the worst. This feels to me like the worst. Kevin and I were both hoping it wouldn't progress to the bones, or another organ, (liver or lungs) for a while yet. And bones are nasty. that's when you start having pain to go with everything else. At least up to this point all the pain I've endured was caused by the treatment, not the disease itself.

But sometimes I am in despair. My daughter is twelve. I've hoped, over the last six years, initially to live a normal life span. Then I hoped to make it to 62, to retirement. Then 55 - early retirement? Then, when the cancer returned, I ratcheted it down. Tessie reaching age 18, that's 6 years away. Now I still hope for that, but I wonder about it being even shorter - two more years? Three? It feels truly awful, and haunts my imagination in the middle of the night. And most of the day. Externally, I'm managing to go through the motions - going to work, cooking supper, dancing, hanging out with friends, getting treatment. Inside, I'm curled up under a blanket, and clutching a teddy and crying. I cry in the shower, with my head resting against the cold tiles, and hot water running down my back. I drop Tess off for ballet, and cry in the car once I'm by myself.

Nobody loves chronic. And now I'm learning the difference between chronic and incurable. Or perhaps ultimately fatal, if you want a harder word. Chronic is something that affects you permanently, but to me incurable adds the load that even if you go through treatment, and do everything right, the disease will probably still eventually kill you.

I suspect I will adjust over the next few weeks. I generally feel pretty lucky. I adore my family, I have a good job that provides my health care, I live in a very safe and wonderful place. I just wish that this threat wasn't hanging over me all the time. It starts to feel like I'm carrying a dumpster around on my shoulders - absolutely wearying and exhausting, and no getting away from it.

Fooey.

Love,
grundoon

p.s. Credit to jessica pierce of spidercamp, for the title, originally from www.everything2.com.

Beast Chthulu and bone metastases

In answer to a friend who wants to take me to the "new body store"..

She says, "I am familiar with lymph glands...but I'm not familiar with hilar. Where and what are those? So I am tactless enough to ask, what will the cancer moving into the bones do/mean? Is this unusual or par for this kind of crap? Are you in pain from any of that? I know the chemo is doing a real number on you.... God Chris, I know it's been said again and again, but this is all so unfair. I wish I were out there and could help you and yours in some way. My love and thoughts are with you.."

Hilar lymph nodes are around your lungs and trachea. The lymph nodes are trying to keep the breast cancer cells from moving into other organs, like lungs and liver and brains, so they are doing their job - but they get bigger as they try to fight cancer. (Poor immune system, it never gets a break.) There's now enlarged lymph nodes along my collarbone, down along my trachea, and a couple of other spots where they are doing their level best to contain spreading cancer cells. The human bod is an amazing thing.

Bone metastases can be nasty because they can apparently get very painful. Mine are currently small enough that I wasn't really experiencing any pain, and we caught it fairly early. Here's a cool thing - bones are being eaten up and replaced all the time. Osteoclasts and osteoblasts, respectively, remove old calcium and make new. Who knew? The drug I'm taking (not chemotherapy) partially blocks the osteoclasts, so the bone makers get to work overtime. Chemotherapy kills the cancer cells, osteoblasts come in and make me some new bones.

Breast cancer tends to be "responsive", which means a high percentage of people have their cancer go away or decrease from a lot of different kinds of chemotherapy. I still have many choices, including some new ones, Gemzar and Xometa, and then heavy metals like platinum, and thalidomide, or I could repeat adriamycin. All poison, basically, so all have side effects, and that's the yucky part.

Sweet pea, everyone has to die of something. I will probably die younger than I want to, but doesn't everyone? OK, my grandmother was 94, and I think she felt as though she got fair innings. My mom was 61, and certainly we didn't think she got her fair amount of time. We are just all hyperaware of it in my case because I have a nasty, chronic, incurable and ultimately fatal disease. But it's also just scary because our culture finds it scary. Cancer is loaded with societal mythology, way more so than heart disease, even though heart problems are more common. Part of it is that from about 1940 when cancer started to get more common, until about 2000, cancer death rates were climbing - so it's still considered a death sentence, when it's really not, any more than HIV is. So for our parents' generation, it was something people whispered about.

And don't get me started on the pink ribbon brigade. The message that if I had just been perky enough and pink enough I would have "beaten" my cancer is not, shall we say, a useful message. There's 130-some odd women with metastatic breast cancer in my online group, and to a woman, as far as I can tell, we all HATE breast cancer awareness month. We are the invisible survivors - not members of that club. But nobody dies of stage two breast cancer. Everyone whom it kills, dies from metastatic cancer. Makes you wonder why only 5% of the research money is spent on this stage. Follow. The. Money. Astra Zeneca is making a fuckton of money on, you guessed it, tamoxifen. Prevention? Hell with THAT, when we can make money off of those lucky 1 in 7 women who will have breast cancer in their lifetime.

begin rant - If you give money to a cancer charity, PLEASE make sure they discuss prevention in their propaganda, NOT a cure. If they only talk about a cure, dig down, and I'll bet you they are at least partially funded by a drug company, and insurance company, or both. Susan G. Komen is. WhyMe? is. Thank you. end rant

We, American adults, are still more likely to die of heart disease than anything else. Canadians, interestingly, are more likely to die of cancer. US is 1) heart disease, 2) cancer, and 3) diabetes. Canada is 1) cancer, 2) heart disease, don't ask me why. Differences in the health care systems, I suspect. Here if you can afford it, you can get more and fancier cancer care, and the US has a slightly lower death rate, something like 29% as opposed to 32%. Most first world nations hover in the low 30% for overall death rates from cancer. But a diagnosis of heart disease isn't nearly as scary as cancer. Why? The illness, not the disease. Our ideas and beliefs about cancer, not the actual fact of cancer and cancer treatment, or survivability.

I don't plan to croak any time soon. Think of it as diabetes, something that is being treated, and the treatment is sort of nasty, like I'm sure dialysis is. It's not exactly parallel, but it has similiarities.

Love to all,
grundoon

The ongoing saga

Dearly beloved,

I started a new round of chemotherapy Friday. The cancer has shown up in four new hilar lymph nodes. In addition, the PET scan shows that there are now bone metastases, small areas of cancer growth in my spine, ribs and hips. So along with the chemo, which should stop this progression and hopefully reverse it somewhat, I'll also be getting another drug which helps the bones get stronger again, called Zometa.

I'm repeating the same chemo I had last spring, and I'll be tested in about six weeks to see if there's a response. If there isn't, I'll switch to a different chemo regimen, something called Xeloda. (gotta love these names...) If you are a science geek, the latter one turns from 5’-deoxy-5-fluorouridine to 5-fluorouracil in my bod. I'm hoping it will give me magic spider powers, or at least make me glow in the dark.

By the way, are you allergic to hamster protein? I challenge anyone who has not done chemo to know the answer to this question BEFORE you are exposed to paclitaxel NAB. "Yeah, you know, every time I chew on a hamster my lips swell, and I get all short of breath! Who knew?" Pacletixel -NAB stands for "nanoparticle albumen bound", and the albumen it is bound to comes from hamsters. Maybe instead of spider powers, I'll get magic hamster powers, whatever THOSE are.

I am tired, and fairly deep in my cave. It's hard to express to someone who has never dealt with a chronic, incurable, progressive disease the amount of stress we are under, nor what an emotional roller coaster it really is. Kevin is exhausted and thin, vulnerable to every cold and flu bug going around. Not to mention starting a new job. I'm working, and find that I often go in at odd hours, so I don't have to chit chat - I want to go in, work, and then come home and rest and be with my family.

I think sometimes people coming in from the outside are horrified by what stress cases we are, but at the same time, I long for understanding. Lately, my answers to "How can I help?" are...Drop off a meal; fold laundry; take Kevin out for a walk; and sit and listen to us talk (vent) for half an hour, and try to get into my world. Planet Cancer is NOT your world, but sometimes it's too much effort for me to act as if I'm in yours. Every once in a while it's really useful to have someone try to walk in mine. The few people who have done this, I think, have a far better understanding. Interestingly, MOST of them also are living with chronic disease, if not cancer. Maybe that's the only way to make the jump into wanting to understand.

Visiting metastatic cancer babe

Wrutten by another person in my metastatic cancer babes group. Brilliant, and to the point. Reproduced here with her permission.

To my very supportive Family,

I thought I would send you all a note just to let you know what is going on and why I may seem out of sorts and short on patience. On top of all the regular craziness of raising four kids, working and having a husband that travels all week every week, being diagnosed with an advanced cancer takes the stresses of life to a whole new, different level. I’ve experienced things and have felt emotional highs and lows like I never could have imagined. Let me try and explain where I am coming from.

Where to even begin? How do you try and explain to the world that you are doing ok and doing more than all the right things, and you can still have days where you are frightened beyond words and have absolutely no patience and feel like you can blow at any moment? Its not easy living with a disease that kills people daily, and the uncertainty of its behavior can literally drive you mad if you let it. I try and find the positive and the humor in all that I do, but there are going to be some days where I just don’t have it in me. AND THAT NEEDS TO BE OK....some days I NEED to be in that bad place and to face those horrible thoughts and feelings. It actually is quite normal and down right therapeutic to be there. I think the key here is that when I’m there, I don’t need a pep talk. Unless you’ve squirreled away the cure, there really isn’t anything you can say that will change the way I am feeling in that moment. I’ve seen and heard one too many stories about people declining and/or dying from this disease (or any cancer for that matter) and I wouldn’t be human if they didn’t affect me. I know their stories are not mine, but trust me when I say, you can’t help but think if that is going to be what happens to you.

What I need is just for everyone to listen and let me get it out. I know what I need to do and I know that I am doing everything in my power. So, what I need in those times is validation and someone to just tell me that, “You are right, this really stinks.”. or “I can hear your frustration and I don’t blame you for feeling like that...”.

I can’t imagine what it must be like having to watch someone you love struggle through all of this and have not one ounce of control or power over what its going to do. Not that I have any more power than you, but at least I know how I feel just based on being in my body and knowing how I literally feel day to day. Watching has got to be beyond maddening. They do say that Cancer is a family disease because it does truly affect everyone in the family in some way.

I know I make this look easy, and for the most part, it's not that bad. But there are going to be days when I am not myself and have little patience. I’m doing my best to find a way to ease those times, but its not always easy. Right now, the stress of having my numbers on the upswing from last month has had me on edge for weeks now. I feel like I’m questioning every single ache, pain, and weird sensation that I have wondering if its cancer related or not. My poor children have seen me blow my stack a little bit too often lately. I hate that I can’t always control my frustration and let something they do be the push that opens the emotional gates. Bryan said to me the other day, “Mom, the next time you get upset with us and yell, could you please watch your language...”....it actually made me laugh, which is probably a good thing...who would of thought my kids would be my moral compass...

When did I lose my brave little soul?

When did I lose my brave little mind?
Cancer erodes me, small losses I find
add up, I am not the person today,
Whose mind once sang bravely as I rode away.

When did I lose my brave little soul?
Each time I fight but I've lost the whole
The future feels short, I don't plan ahead
I just stumble forward, my heart filled with dread.

When did I lose my brave little heart?
I don't remember if I felt the start
These changes are quickening, slippery slope
I don't yet give up, but I've given up hope.

I've lost them, I miss them, I sense the the tears' toll,
When did I lose my brave little soul?




For Susan Chung
from a line from her poem
"When did I lose my brave little heart?"

Guardians

Trapped

There are days when this is how cancer feels and cancer treatment feel. The world is out there, and is gorgeous, but I can't get at it. I'm trapped in the cancer cage.

The road to hell is paved with good intentions.

Expectations are getting to me. The feeling of expectations placed upon me, about how I'm expected to be. Be brave. Be on top of everything. Don't be angry. Be supportive. Don't make mistakes. Be clairvoyant about what everyone else around you needs, even when you are exhausted, strung out, have been running errands all day, worrying about money, and have just had a PET scan. Alone. Because apparently your regular cancer buddy is angry with you, and everyone else has conflicts. Even when you are terrified that you are going to get results that you don't want.

Well, the truth is I feel sad, angry, overwhelmed, and hassled. Sorry I'm not living up to everyone's expectations, but more to the point, frustrated that I'm not, and wishing everyone would cut me some more slack. I'm exhausted, very down, and fighting depression. And yes, I have some pretty weird ways of trying to cover it up.

If the lymph nodes are larger, we probably will start chemo again in January. Sounds like I have three choices at least. Continue paclitaxel, which has worked fairly effectively in the past. Try an oral, maintenance chemo, like Gemzar. Up side, not as much hair loss. Down side, probably more neuropathy in my hands and feet, and that is one of the side effects that tends to bug me the most, after only GI symptoms and nausea.

Another possibility would be to repeat Adriamycin in combo with some stronger stuff like cytoxin. I'm sort of tempted by this. A much stronger drug, possibly with the potential to knock the cancer out for longer, since it's been five years since I've had it. Down side, neuropathy, and the possibility of heart damage. I would need to talk through it with Dr L. Also, I don't really know if Kevin and Tess would be up for this. It would knock me out much more thoroughly for about four months, a lot more couch time, a lot less energy. Still, spring is looking fairly mellow from the work end, and we just have PODS to empty and sort in the next few weeks.

Bones ache. Not enough exercise over the break, so the steroid symptoms are worse. Right hand and feet are swollen, and I can't seem to get the lymphedema to go down, so my elbow aches all the time. Puffy face and collarbones.

(I do try not to whine.)

Still, New Year's Eve dance party to enjoy this evening. Dancing may break me out of the cage, at least temporarily.

I don't know. I don't think I can be a badass this week.

Nothing left.

PET Scan.
Thrush.
Pierced ear that's infected.
Bloating.
Neuropathy. Tingling in fingers and toes.

Bills. Bills, bills, bills.
Fatigue.
Kevin has caregiver's syndrome.

Mother
cancer patient
Working part time. (Work is good...)

Fighting depression.
Trying to start a garden.
A little bit of dancing.

Ballet is brilliant.
Ballet moms are brilliant.

Zazen and breathing help.

The question nobody asks

Helen, are you going to die?
Because if you are going to die, I'm going to come see you first.
- Alice Sims -

What's the prognosis?
Jennifer and Karen


No. I'm not. Actively anyhow. Any more than you are.
And I'm often annoyed that you don't have the guts to ask me this, when I can see it in your eyes.

As you all know, I talk about cancer, breast cancer, boobies, cancer statistics..a LOT. I am immersed in the culture of cancer and cancer care, and the bigger argument about health care (EPIC FAIL!) which is still raging in this country.

Sometimes I wish I'd shut up. Sometimes I'm sure you wish I'd shut up. But this one, PLEASE let me answer it for you.

I am not actively dying any more than you are.

Cancer these days, including metastatic cancers, GI cancers, all those nasty things that your parents either whispered about or hid when you are a kid, are now much closer to a chronic disease than the mostly fatal disease that they were back then.

Yes, I'm more likely to die of cancer than you are. But I'm not much more likely than your friend who has diabetes to die of it within, oh, say the next two to five years.

OK. Statistics. If you are an American, you are most likely to die of heart disease. One in two. Fifty percent of deaths, flat across the board. If you've been told you have a heart issue, or high cholesterol, guess what? Your disease is just as likely to kill you as mine is to kill me. Uncontrolled, you may be worse off.

Number two killer of everyone is cancer, all types. Memory is that it's about one in three. Number three is diabetes and diabetes related problems.

But why doesn't a diagnosis of heart disease get the response that cancer does?

My favorite written cancer story is called Grace and Grit. Written by Ken Wilbur but about half authored by Treya Killam Wilbur, it's about their lives, and the five years where they lived with breast cancer, and eventually diabetes as well. She was diagnosed right before their honeymoon, and the two of them lived with it during their entire marriage. This sound familiar to anyone? Its authored by Wilbur, using a large number of quotations from Treya's diaries. Wilbur has been writing for years about the perennial philosophy, and so their story is woven in with his own early philosophy. But they also went through it in the 80's, when breast cancer was killing more and more women.

One of the things Wilbur nails is the difference between the disease and the illness . The disease is what is happening physically in my body, and what that does to me. I have some cells that won't behave, that have learned NOT to stop growing and dying, and sometimes their growth interferes with other stuff, so I have to try and control them.

The ILLNESS is the vast cloud of cultural beliefs, myths, and gobbledygook that surrounds the disease. Pink ribbons, for fuck's sake. (Gag me!) The idea that it's always a fatal disease. Pity, fear, misunderstanding, the fear that it's contageous. Asshattery. Sympathy, support. Misunderstanding. Judgement.

One difference from heart disease or diabetes is that often cancer patients look like shit. Chemotherapy can be fairly obvious, and believe me, we don't just look half dead, we feel half dead. And that's pretty much now it works. Chemo kills you part of the way, killing the cancer at the same time, and then we hope that your body and immune system can rebuild itself over time from half dead back to mostly alive, without the cancer. The basic structure of this has not changed since the 1950's, and it's how almost all western cancer treatments work - chemo and radiation in particular.

Radiation for the chest for me was worse that chemotherapy, but gamma knife surgery was a piece of cake, other than taking steroids. Right now, I look in the mirror, and it bugs the shit out of me. My face is puffed up from steroids, and I joke with wertperch. The last chemo I had, strangely attached to, yes, HAMSTER protein (Nanoparticle Albumen Bound paclitaxel, an experimental drug, for those of you who like the fancy stuff) must have backfired, and I am slowly turning into a hamster. Steroids make you puffy, and over time they can make you grow more hair, so no whisker jokes, please....)

I know, I know, I'm rambling, but I'm trying to get there.

I. Am. Not. Dying. Any more than you are. I am living with a disease that to some extent can take over your life, but truly not dying.



There are about 120 women with metastatic breast cancer who talk on a a popular web site, and one of the things we constantly bump up again is that people have trouble coping with the question they can't ask. How long have you got? What is the prognosis? HOW SOON ARE YOU GOING TO CROAK? In the four years that my mother was dealing with ovarian cancer, exactly one person asked her that, and in the almost six that I have, exactly no one, until last week. Clever Jennifer, a nurse, asked what IS the prognosis? Thank the STARS! And wertperch once in a while gets the pitiful "How long does she have?" Sometimes he answers, sometimes he walks away, depends on the particular social graces and timing

But you know what? I can see it in your eyes, the moment when you want to ask me that. And geez, go for it. What's the prognosis?

Fifty percent of people with metastatic breast cancer die within two years. (pre 2002 - 22 months.)
Forty percent of people SURVIVE for five years.
Eighteen and a half percent of people are alive after fifteen years. (pre 2002 - 3 percent.)

Now stop. And think VERY carefully about the bell curve that this forms.

Half of patients die within two years. All the rest, except ten percent, go at least five. Why?

That is what statistically is called a long tail. The top of the bell curve ramps up really fast, and then the slope down is long and gradual. WHY? The ILLNESS, not the disease. My friends, I am GOING for the long tail. Fifteen years, just stay out of my Amazon freight train way.

My oncologist says he can pretty much tell how someone is going to do in the first few months of treatment. Or the first time he meets someone. About half the patients give up at the moment of diagnosis. They think Cancer = Fatal =I'm going to croak.. and they proceed to croak, treatment or no treatment. The other half say, Right. I'm going to fight. What you got for me? And a sensible physician, like Dr. Rosenberg, says we are going to take a big bat, and we are going to hit that sucker HARD. (And man, did they.) And the fighters tend to go on and on. They repeat chemotherapy. They repeat radiation. They do hormone therapy. They do clinical trials. And in the most recent study, which ran from 2005 to 2010, proves that it works, people routinely live with breast cancer for 15 to 20 years, or longer.

Breast cancer, unlike, say, ovarian cancer is typically extremely responsive. With ovarian cancer or stomach cancer, still, if you have it, and then it RECURS, you are probably going to have a tough time. They are resistant to a lot of chemotherapy drugs, with only a five to ten percent response rate. So they stack them up, and still only 30 or 40% of patients get their cancer croaking instead of saying, HAH, I am in your base, ignoring your chemo! Whereas breast cancer has a ton of good chemo agents, and you can stack those suckers up. Gemzar. Cisplatinum, and all the other heavy metals. Thalidomide. Now, as you go down the line, the side effects get nastier, but still. THEN you can do clinical trials. Right now there's one trial, for 30 women, where they will CUSTOM design a drug for the particular protein in your PERSONAL tumors! Designer drugs! I don't qualify, but man, how cool is that? We could get Ralph Lauren to sign on and design the hospital gowns, and people would beat a path to the door. If I qualified, I'd sign up right now.

The down side is, no one knows this side of the story. So we often get, shall we say, a misguided reaction? More and more, the blog I'm writing is about the story, and the fact that NO ONE has done what we are doing, which is living with this stuff as a chronic disease, rather than a fatal one. AIDS is similar. It is no longer considered a fatal disease, because of amazing treatment developments. Some of the side affects of the treatment are nasty, and the sociocultulural illness structure is undoubtedly even worse than cancer. A stigma within a stigma. "What's the hardest part of telling your parents you have AIDS?" "Explaining to them that you are Haitian." Did you know your jammies don't go with your lesions? Well, at least I don't have CANCER. (It's possible those jokes are way out of date, and no one else will get them. From when AIDS was first appearing, about 30 years ago.)

We are, none of us, dying of cancer. We are living with it, our families are living with it, our children are living with it. Some days we cope with grace, sometimes we just cope. Elizabeth Edwards' death was hard on us. It was a reminder that in spite of how groovy we are, and our good attitudes (SMILE OR DIE) and our juicers and our raw food diets and our gin and margaritas on the sly, that this could get us, eventually. That we could do everything right, and still croak. And these gals are the tough ones - they are, like me, living with lesions in their chests, heads, livers, bones...pain, side effects, loss of function, etc. They have trouble getting in and out of their bathtubs. They might walk with a cane. But they are badasses, to a dame.

And man, do they have GUTS. Grace, AND grit.

But truly? There is nothing worse than no response. If you want to know, ask the question. A stupid question, or a silly one, in my book, is far better than nothing. And really, that is a polite way to do it - "What is the prognosis?" is just FINE. Just think about your timing, I'd sort of prefer you don't ask me in the grocery store. Two other useful questions - "How are you TODAY?" Is far better than "How are you?" You might illicit far more info than you want with the latter..and, "What's new?" Is great.

So there you go. Prognosis - good. Side effects, sort of gnarly at the moment, but whatever. I won't look like a hamster PERMANENTLY. Family drama, a little over the top, but winding down. Work, fantastic. Weather, lovely. Fine, thank you, how are you?

Love, grundoon

I has a bucket.

Physical -
cracked lips
mouth sores
sore throat
upset stomach
puffy face
bloody noses
lymphedema
bloating
GI stuff
hellish weird appetite
swollen ankles

Emotional -
Mood swings
Irritability
Insomnia
Hyperactivity
Did I mention insomnia?

Other stressors -
All three of us with local creeping crud
Bills
Garage sale planning
Me going out of town
Nutcracker - fun, but stressful!
Working
Grants
Oh wait - gamma knife radiation?
Doctor's appointments
Bank account with fraud issue
Fake cashier's check
Caregiver's syndrome
Close friends with a death in the family - brain cancer, glioblastoma

Other than that...Doin' dandy.

Swimmer

This one really creeps Kevin out, he hates praying mantids.  I may change her, I love the merperson top half.   And seahorses.  But Is It Art?

venus de chemo

Grief again

So lately I just seem to wake up crying.

It happened a few days ago, and again this morning, after one bout of being up. I managed fall asleep a second time, which doesn't always work, but the had an extremely odd dream.

I'm really grieving. This last round of no cancer/cancer feels like whiplash, and also has given me a real emotional smackdown. We had ten days. Ten days where we were told, and we got to hope, that I would be cancer free (or at least between treatments, and No Evidence of Disease). Then brain metastasis number two popped up.

And I wonder. Is this the new pattern? After the first round of breast cancer, and all the nasty treatment, I went on tamoxifen, and went three years almost to the day before a rediagnosis. That bumped me up to Stage 4, and metastatic breast cancer. Meaning we can treat it, but the odds of it going away all the way are slim.

I did chemotherapy again, and went another 9 months, and then the third round - and the cancer had travelled from chest, breast and lymph system over the blood brain barrier, and we faced up to brain mets and gamma knife surgery. I also repeated chemo for the third time, to treat cancerous lymph nodes in my shoulder, chest and along the trachea.

Since that surgery and chemo, chest appears to be stable, but the second bratty little brain squid reared it's little pointy head - approximately eight months after the first. HOWEVER - it appears to have popped up visibly on the MRIs in the space of about 6-8 weeks. Slowly, creepingy, it speeds up. It sneaks in, and takes over. Sooner or later, I stop hoping for a break, and start imagining continuous chemotherapy, more rounds of gamma knife, being on the steroid for the rest of my life...

Dearly beloved, I'm TIRED. And grieving. I'm grieving for my family, who never get to have NORMAL. They have me wired on steroids and irritable, exhausted from treatments and too many doctor's appointments, worrying about money all the time...

Denial, grief, anger, bargaining, acceptance. It's not once, but over and over that you recycle these emotions. I feel as though all my fuses are blown. The only two that are operative right now are grief and anger. I cry in the car. I cry in the shower. I cry over silly dramas that people create around me, and hurt feelings, and feeling misunderstood.

And I cry about letting go.

I don't think I get to see Tess dance the Nutcracker 10 years from now.

Most of the time, I am an optimist, a fighter, a person who is taking this on as a chronic disease. Who will handle the treatments they throw at me, try new stuff, do clinical trials, inject hamster proteins into my veins to fight this disease. But at best it's a stalemate. I no longer believe I can win.

And at what point is enough enough? Do I say, I can't take this any more, please let me stop? No more treatment. No more radiation, no more chemo. Now I just get to be comfortable, and enjoy the time I have left. It's not now. It's probably not soon. But it's coming.


I see the question that no one ever asks in their eyes. They ask about the prognosis, the treatment, the timing. What they really want to ask is, how soon are you going to die? Do you know? But no one asks, it's way too socially incorrect.

No, I don't. I know the stats. I know the pattern. Nobody knows when they are going to die, your doctor doesn't know when HE is going to die. But the part I know that most people don't, is that with metastatic breast cancer, there's a choice. Most women do not exhaust all the options they have for treatment. With ovarian cancer, if it comes back, it's usually as refractory disease - in english that's cancer that does not respond to most or any chemotherapy. Breast cancer has dozens, and it is generally considered "responsive". But women..just run out of steam. Choose to stop treatment. And having seen two people through it, I know what happens next.

So it's possible that I have a much clearer idea of when and how I might die than most people.

And it is making me cry.