At this point, we have received two opinions on appropriate next treatment steps. The oncologist at Rush suggested we investigate a clinical trial happening at University of Indiana at Bloomington. The trial tests whether additional chemo helps patients in my situation. At this point, we are disinclined to participate in the trial (mostly because I find myself hoping to be in the placebo group, and it doesn't really work that way).
The second oncologist - from Northwestern - absolutely felt more chemo wouldn't be appropriate. However, Dr. C had a few surprises. Her opening remark was 'we need to discuss having your ovaries removed as soon as possible'. This came out of left field for us - all previous discussions had supported the idea that I could have them removed at age 40.
Dr. C's logic was this:
- I have an estrogen-receptor positive cancer, which means estrogen will encourage any remaining cancer cells in my system to grow, divide, and become new cancers.
- Because I had cancer in 10 lymph nodes (a lot, according to Dr. C), and estrogen-receptor positive cancer resists chemotherapy, I absolutely positively have lots of circulating cancer left.
- Therefore, I need to do everything possible to discourage those cells, which means cutting out as much estrogen as possible.
- Women produce estrogen in two ways. First, through the ovaries. Second, through a compound released by the adrenal gland which the enzyme aromatase transforms into estrogen.
- There are two types of hormonal therapy drugs designed to interrupt the body's estrogen pathways: tamoxifen and aromatase inhibitors (such as letrozole). Pre-menopausal women can only take tamoxifen (which carries a risk of endometrial cancer and heart problems). Post-menopausal women can take letrozole (which doesn't carry additional cancer risk, but does increase bone loss). In head-to-head trials with tamoxifen, letrozole delayed additional cancers longer than tamoxifen.
- So, if I need to cut out as much estrogen as possible from my body in order to keep the cancer from growing, and letrozole is a better drug, then the best thing to do is to remove the ovaries in order to 1) remove the first source of estrogen and 2) make me post-menopausal so I can take an aromatase inhibitor to block the secondary pathway.
Dr C talked a lot about my being extremely high risk. She said that at this point, I am extremely high risk, but(blah blah blah) taking tamoxifen would cut that risk in half. However,(blah blah blah) at that point I would still be at extremely high risk. Doing the surgery, and taking the letrozole would cut my risk further, but (blah blah blah) I would still be considered extremely high risk. At this point I got a little frustrated (how does extremely high divided by two minus some more equal extremely high?). So, I asked if she could give me some concrete idea of what that risk might be. Unfortunately, according to Dr. C, because I did the chemotherapy before the surgery, all the methods of calculating risk don't apply. So I said, "look, I am going to fight hard no matter what, but I just want to know how hard a fight I am facing." Dr. C paused, looked me right in the eyes, and said, "you're going to have to fight really hard". We realized in that moment that Dr. C wasn't really talking about cancer risk. She was talking about death.
Zack and I have discovered our conversation with Dr. C reoriented our thinking about the immediate future in several ways. Not having children is no longer about my (in)ability to have them, but rather that carrying a child (with the hormones that would involve) could kill me. Hormonal therapy will reduce my risk of more cancer, but that is in many ways a proxy measure for mortality - the next cancer, wherever it strikes, will probably be much more dangerous than this one. At various times over the last six months, we have had to grapple with the huge changes to our future that this cancer has brought: memory problems that could inhibit my ability to finish my dissertation, numbness in my hands that make day-to-day activities more difficult, ovary difficulties that make having a child unlikely, the screening and monitoring that I will need that make living in areas with good oncology centers important, the absolute dire necessity of health insurance.
What we haven't really dealt with are the possible changes to the horizon of our time together. I used to joke with Zack that he had to lose weight so that he didn't have a heart attack at 55 and leave me alone to be the crazy old cat lady down the street. We celebrate the seventh anniversary of our first date this weekend - another twenty years together is beginning to sound miraculous. Not that I don't fully intend to make it that long - I haven't given up, nor will I spend the rest of my life declaring that I could die any minute. But it will take beating some pretty steep odds to get there, and sometimes, despite our best, most superhuman efforts, we lose.
We are starting to find our way toward laughing about it. Or at least toward gallows humor. It started with a question: "What changes do you make if you only have a short time together?" Answer: "Never fly coach". We started throwing things back and forth: "Buy the good stuff". "Find something to enjoy every day". "Go to Australia". "Make sure there is something to look forward to every tomorrow". "Celebrate everything".
So please join us in celebrating 2008. Go top shelf.
Wednesday, January 16, 2008
Wednesday, January 9, 2008
Demented Bees
Radiation was quite an adventure yesterday. The short version: post-holiday clogs and computer glitches put the RadOnc office two hours behind. Eventually, I had my first treatment, which sounds like a hive of demented bees. Everything looks fine.
The long version: After 90 minutes of Fox News in the outer waiting room, I was brought into the inner waiting room. The inner room is only for patients, where we all sport our super-fashionable hospital gowns. Sarah1 came to fetch me, and brought me back to the treatment room, where we were joined by Sarah2 and Angela-the-student. I lay down on the table, where they promptly pulled my gown down to my waist(worn with the opening to the back, to 'preserve my dignity'). At last week's visit, they made a hard mold of me from the top of my shoulders up. The Sarahs maneuvered me into my mold, pulling my arms up and over my head and wrapping my hands around a T-bar. My pecs still haven't quite stretched out after the surgery, and last week doing the CT scan, I tore some of the internal stitches holding my pecs to the 'skin pouch' Dr. L put into my right breast. Unfortunately, all that means holding the position the Sarahs wanted was awfully uncomfortable. At this visit, the Sarahs took several X-Rays to make sure my actual body matched up with the CT scan from last week. They had computer problems, and kept coming in and out trying to solve them. I finally gave in after about 15 minutes and asked if I could put my arms down for a minute. Sarah2 said, 'Sure! But you'll have to start all over again.' I started reciting the "O for a muse of fire..." speech to keep myself distracted (thanks, Peter!). Finally, they had the X-Rays they needed, Dr. I approved them, and I was good to go. Except they needed to tattoo small locating dots at various places on my chest, so I had to keep my arms in place...but first, I got a break. I've never been more relieved to curl up into a fetal position.
So, I understand technical difficulties, and I understand scheduling snafus. What makes me crazy, though, is the 'furniture attitude' of the techs. Five different techs went in and out of my room, where I was lying half naked, blind without my glasses, hurting and freezing cold. None of them bothered to talk to me, to let me know what was going on, or to acknowledge my presence. If two techs entered together, they muttered to each other, without including me in the conversation. Treat me like a human being, please. I make a rotten chair.
To be fair, Dr I pulled me into his office after the whole thing to check me over, and to 'personally apologize' for the wait. I shrugged in response (the compromise between understanding, and being angry over the techs' treatment of me). Dr I said, 'look, you've been through enough already. You don't need this shit'.
He is absolutely right. I don't.
The long version: After 90 minutes of Fox News in the outer waiting room, I was brought into the inner waiting room. The inner room is only for patients, where we all sport our super-fashionable hospital gowns. Sarah1 came to fetch me, and brought me back to the treatment room, where we were joined by Sarah2 and Angela-the-student. I lay down on the table, where they promptly pulled my gown down to my waist(worn with the opening to the back, to 'preserve my dignity'). At last week's visit, they made a hard mold of me from the top of my shoulders up. The Sarahs maneuvered me into my mold, pulling my arms up and over my head and wrapping my hands around a T-bar. My pecs still haven't quite stretched out after the surgery, and last week doing the CT scan, I tore some of the internal stitches holding my pecs to the 'skin pouch' Dr. L put into my right breast. Unfortunately, all that means holding the position the Sarahs wanted was awfully uncomfortable. At this visit, the Sarahs took several X-Rays to make sure my actual body matched up with the CT scan from last week. They had computer problems, and kept coming in and out trying to solve them. I finally gave in after about 15 minutes and asked if I could put my arms down for a minute. Sarah2 said, 'Sure! But you'll have to start all over again.' I started reciting the "O for a muse of fire..." speech to keep myself distracted (thanks, Peter!). Finally, they had the X-Rays they needed, Dr. I approved them, and I was good to go. Except they needed to tattoo small locating dots at various places on my chest, so I had to keep my arms in place...but first, I got a break. I've never been more relieved to curl up into a fetal position.
So, I understand technical difficulties, and I understand scheduling snafus. What makes me crazy, though, is the 'furniture attitude' of the techs. Five different techs went in and out of my room, where I was lying half naked, blind without my glasses, hurting and freezing cold. None of them bothered to talk to me, to let me know what was going on, or to acknowledge my presence. If two techs entered together, they muttered to each other, without including me in the conversation. Treat me like a human being, please. I make a rotten chair.
To be fair, Dr I pulled me into his office after the whole thing to check me over, and to 'personally apologize' for the wait. I shrugged in response (the compromise between understanding, and being angry over the techs' treatment of me). Dr I said, 'look, you've been through enough already. You don't need this shit'.
He is absolutely right. I don't.
Friday, January 4, 2008
New Things in the New Year
The first project for 2008 is to clean up the local cancer, and regain my mobility after surgery. I happily report that the numbness in my fingers and toes has started to recede, and my family has commented that I seem to be thinking faster. And I have hair! And eyebrows! Still, I have to be careful, as my mental stamina has begun to outstrip my physical stamina. For example, I imagined I was ready to cook, so, thinking I would start simple, decided to do a baked chicken, salad, and roasted root veggies. Unfortunately, I didn't really think the whole thing though paying attention to pectoral muscle use. Peeling potatoes - pecs, yes. Cutting up hard veggies - pecs, yes. Lifting pot with chicken and veggies - pecs, yes. Thankfully, Zack stepped in as sous chef. I mostly made the salad.
Yesterday, exactly one month after surgery, I had my first radiation appointment. Dr I (and his team of minions) used a CT scan to make a 3D model of my torso. This will allow them to design the firing pattern for the radiation emitters (I'll figure out what they are called when I begin next week). The only problem was an area-type geometry one: to fit into the CT, I needed to get my arms up over my head with my elbows down. Unfortunately, I don't quite bend that way, yet. Eventually, with three technicians pushing and maneuvering, I got into a suitable position. Who knew lying on a table could be that difficult? By the end (after 15 minutes of Sarah saying 'just two more minutes...') I was panting and sweating.
Speaking of panting and sweating (and stretching, and aching), I also started physical therapy last week, with my first real appointment yesterday. (Oh yes, I did PT after working so hard getting into the CT yesterday morning. Really dumb.) Robin and Claudia are both trained lymphedema specialists, who work with lots of breast cancer clients. They are charming, upbeat, sweet, funny, lovely...with an inner core of pitiless drill sergeant. I have complete confidence that I will regain all of my strength and mobility, whether I like it or not. Robin and Claudia definitely respect my pain threshold, and have emphatically stressed that PT is 'not a no pain/no gain proposition', but they most certainly don't kid around.
So, for the next 6 weeks, my schedule looks like this:
Radiation, Monday through Friday, 2:45-3pm
Physical Therapy, twice per week before radiation for an hour.
Stretching at home, every day, 30 minutes
Jumping jacks, here I come!
Yesterday, exactly one month after surgery, I had my first radiation appointment. Dr I (and his team of minions) used a CT scan to make a 3D model of my torso. This will allow them to design the firing pattern for the radiation emitters (I'll figure out what they are called when I begin next week). The only problem was an area-type geometry one: to fit into the CT, I needed to get my arms up over my head with my elbows down. Unfortunately, I don't quite bend that way, yet. Eventually, with three technicians pushing and maneuvering, I got into a suitable position. Who knew lying on a table could be that difficult? By the end (after 15 minutes of Sarah saying 'just two more minutes...') I was panting and sweating.
Speaking of panting and sweating (and stretching, and aching), I also started physical therapy last week, with my first real appointment yesterday. (Oh yes, I did PT after working so hard getting into the CT yesterday morning. Really dumb.) Robin and Claudia are both trained lymphedema specialists, who work with lots of breast cancer clients. They are charming, upbeat, sweet, funny, lovely...with an inner core of pitiless drill sergeant. I have complete confidence that I will regain all of my strength and mobility, whether I like it or not. Robin and Claudia definitely respect my pain threshold, and have emphatically stressed that PT is 'not a no pain/no gain proposition', but they most certainly don't kid around.
So, for the next 6 weeks, my schedule looks like this:
Radiation, Monday through Friday, 2:45-3pm
Physical Therapy, twice per week before radiation for an hour.
Stretching at home, every day, 30 minutes
Jumping jacks, here I come!
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