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?"