I'm down to my last week of treatment. The last week of this 6-plus month journey is here. I've finished the main radiation treatment, and next Monday through Friday I'll have the "boost"--a beam more narrowly focused along my lumpectomy scar. I've developed some redness, though it's very mild, and fortunately next week's treatments will avoid the red areas. Hopefully I'll get out of this round of treatment with minimal scathing.
And as of Friday, October 6 at 11am--I will officially be Done With Treatment. I can move my magnet from the "cancer patient" column to "cancer survivor." I can hardly tell you how exciting that is. Noah and I will be taking the day to celebrate--meals with disregard to diet, blatant ignoring of work, and whatever fun activity we can muster.
And at 9pm--yes, perhaps I have odd priorities in my life--we'll get to see the 2-hour season premiere of Battlestar Galactica, my favorite favorite show. It went on summer hiatus back in March, around the time of my surgery, and I have been looking forward since then to this premiere--partly because I love the show, but partly because I expected all along that treatments would end about then. The confluence is gratifying.
Hair updates soon, I promise! And the diet is still going great--I'm almost 20 lbs down now.
Saturday, September 30, 2006
Saturday, September 23, 2006
Grumbles
Two days after my last post, I went to the urgent care clinic in Manhattan Beach, and was diagnosed with a bacterial infection and given amoxicillin. I had to cancel my MBA classes for the first time ever when I could barely speak or walk on Tuesday. And I still have most of my symptoms today, Sunday, two days into Week 3 of the cold.
We'll post new hair pictures soon, because there is visible progress--although again, it's 7 weeks after chemo, and I thought I'd have a lot more hair by this time. Eyebrows and eyelashes are coming back well, though they're still stubby. Basically, I am making forward progress, but it is very, very frustrating how slowly that progress occurs--and how many steps backward I have to take on the way. The cold is a prime example. It really sucks to get so sick when I expected to be healthier and healthier.
I've heard many people say that things get harder after treatment ends, before everything gets easier. That is starting to make a lot of sense to me. I am still 2 weeks from the real end of treatment, but I want my life back NOW, and it doesn't work that way. Argh.
We'll post new hair pictures soon, because there is visible progress--although again, it's 7 weeks after chemo, and I thought I'd have a lot more hair by this time. Eyebrows and eyelashes are coming back well, though they're still stubby. Basically, I am making forward progress, but it is very, very frustrating how slowly that progress occurs--and how many steps backward I have to take on the way. The cold is a prime example. It really sucks to get so sick when I expected to be healthier and healthier.
I've heard many people say that things get harder after treatment ends, before everything gets easier. That is starting to make a lot of sense to me. I am still 2 weeks from the real end of treatment, but I want my life back NOW, and it doesn't work that way. Argh.
Saturday, September 16, 2006
Quick update
Things are going OK. I've finished my 3rd week of radiation, if you don't count the one day off for Labor Day (which has to be made up later), so I'm halfway to the end of that treatment. Yay. So far I seem to be responding fine, at least in terms of side effects. I have a little bit of redness, not exactly like a sunburn, but like a little mild pinkness from the first day of summer sun after turning pale all winter. No real itching, which is a common source of trouble (scratching leads to faster skin degradation). I bought a couple of non-underwire bras, due to the edict of the rad onc, but one of them is actually more irritating than my underwires. And I've had some heavy-sleepiness kind of fatigue, which I can't be sure I should blame on radiation. It generally hits after a long day of teaching and meetings, and may just be because of that. So, in general I am doing fine with regard to radiation.
In other ways, though...not so good. I got a cold 9 days ago, immediately after a wonderful massage. Massages often stir up toxins in the body and you get flu-like symptoms, and this was really minor at first. I didn't have to take much downtime and was able to teach and attend to my duties all week. But two days ago, Noah came down with it in much more serious form, and then last night I was hit with a real whammy. My temperature shot up to 101.8, and the rad onc had said I must call my regular oncologist if it was over 101. So, at 11pm, I was calling the after-hours line at USC for the doc on call. His verdict: it's a viral infection, not what they worry about for chemo/post-chemo patients. I should hydrate and keep pounding the Tylenol/Advil. Fortunately, overnight the fever broke. But Noah and I are both feeling just lousy today. Lots of sleeping and moping, and not a lot of moving. He struggled out the door late last night to get us more symptomatic relief (Nyquil, etc.), but today we both seem unable to do much. Thanks go to his dad, who's in town and who dropped off lunch (which will probably also be dinner--it was big).
I think this is not cancer-related, and not even particularly compromised-immune-system- related. It's interesting to be just "normally" sick again--and hard to avoid letting it take on bigger meaning. The hardest part is that we are both laid low at once, which means neither of us can do the caretaking for the other. I just hope that we both recover quickly (for me, that my body is strong enough to do so). Like I said, our lives today are all about the sleep and hydration. Will let you know how it goes.
In other ways, though...not so good. I got a cold 9 days ago, immediately after a wonderful massage. Massages often stir up toxins in the body and you get flu-like symptoms, and this was really minor at first. I didn't have to take much downtime and was able to teach and attend to my duties all week. But two days ago, Noah came down with it in much more serious form, and then last night I was hit with a real whammy. My temperature shot up to 101.8, and the rad onc had said I must call my regular oncologist if it was over 101. So, at 11pm, I was calling the after-hours line at USC for the doc on call. His verdict: it's a viral infection, not what they worry about for chemo/post-chemo patients. I should hydrate and keep pounding the Tylenol/Advil. Fortunately, overnight the fever broke. But Noah and I are both feeling just lousy today. Lots of sleeping and moping, and not a lot of moving. He struggled out the door late last night to get us more symptomatic relief (Nyquil, etc.), but today we both seem unable to do much. Thanks go to his dad, who's in town and who dropped off lunch (which will probably also be dinner--it was big).
I think this is not cancer-related, and not even particularly compromised-immune-system- related. It's interesting to be just "normally" sick again--and hard to avoid letting it take on bigger meaning. The hardest part is that we are both laid low at once, which means neither of us can do the caretaking for the other. I just hope that we both recover quickly (for me, that my body is strong enough to do so). Like I said, our lives today are all about the sleep and hydration. Will let you know how it goes.
Wednesday, September 06, 2006
Dream a little dream
I'm not sure that the vaunted "positive attitude" is always a good thing--but occasionally, I am really comforted to realize just how positive my attitude seems to be.
In the last couple of months, I've had quite a few dreams that are clearly "about" my cancer experience. None of them is explicitly about cancer, or disease, at all. But the symbolism comes through loud and clear. Water has been a major symbol in all but one of the dreams. I thought I'd describe some of them here. Hey, after posting my bald head, why not lay bare my psyche as well? (Hair update, by the way: though it's barely visible, I have an even fuzz all over. We think the follicles are about to burst into bloom!)
Dream #1 (earliest): Noah and I were going to a wedding in Amsterdam and we were all dressed up. The only way to get to the wedding was to ride a "bike" that went not on land but on a water highway. I sat on the seat and pedaled; Noah rode on a running-board-like step just behind my seat. If I stopped pedaling or faltered, we would sink into the water and ruin our wedding clothes. Several times, people around us got submerged to our necks, and I was nervous the whole way; but we made it to the end of the water highway intact and dry.
Dream #2: I was performing in a circus show, and had to stand on a tiny platform up high in the air, supported by a single stilt. The platform kept swaying and buckling; I was terrified and kept moaning my fear to the other (unknown female) performer who was there with me. The circus ringleader shushed me, and forced me to stay there even as my panic mounted. I was sure something awful would happen--it was like my "chased by robbers" dreams, in which the robbers always catch me. But this time, after a period of terror, the show ended, and I was safely brought to the ground. (And then I went straight to the snack vendor for some bread...and this dream was before my diet!)
Dream #3: I was walking along a dock in a marina, and looking into the water, which was filled with menacing looking sea creatures--not sharks, but smaller, spiny things that were a lot more scary. All of a sudden I fell into the water, into the midst of all the terrifying creatures. I thrashed about and kept waiting for an attack, or to be eaten; but then I found steps to get out and escaped safely.
Dream #4 (just a few nights ago): I was in "Manhattan Beach" (looked nothing like the real thing), sunbathing and reading on a rocky outcropping at the coastline. The rocky area was just below an elevated pier complex with businesses. I was enjoying myself in a patio chair, when suddenly a huge wave came in and engulfed me; everything around me became ocean. I later realized it was a tsunami. I barely made it to the slope and up to the elevated area, above the inundation zone. I started back down to retrieve my stuff as the water began to recede, but everything was gone. I was very upset at losing not only my chair and book, but also something else that seemed terribly important, though I couldn't remember what it was. In the midst of my upset, though, I realized I had just survived a tsunami and was thrilled to be OK. I started walking uphill toward home. When I was almost there, I realized my keys had also washed away.
Though the last one had a late "gotcha," I'm really struck by how I always turn out OK in these dreams. I'm really hoping that my subconscious has a read on my overall health that's not accessible to the rest of me!
In the last couple of months, I've had quite a few dreams that are clearly "about" my cancer experience. None of them is explicitly about cancer, or disease, at all. But the symbolism comes through loud and clear. Water has been a major symbol in all but one of the dreams. I thought I'd describe some of them here. Hey, after posting my bald head, why not lay bare my psyche as well? (Hair update, by the way: though it's barely visible, I have an even fuzz all over. We think the follicles are about to burst into bloom!)
Dream #1 (earliest): Noah and I were going to a wedding in Amsterdam and we were all dressed up. The only way to get to the wedding was to ride a "bike" that went not on land but on a water highway. I sat on the seat and pedaled; Noah rode on a running-board-like step just behind my seat. If I stopped pedaling or faltered, we would sink into the water and ruin our wedding clothes. Several times, people around us got submerged to our necks, and I was nervous the whole way; but we made it to the end of the water highway intact and dry.
Dream #2: I was performing in a circus show, and had to stand on a tiny platform up high in the air, supported by a single stilt. The platform kept swaying and buckling; I was terrified and kept moaning my fear to the other (unknown female) performer who was there with me. The circus ringleader shushed me, and forced me to stay there even as my panic mounted. I was sure something awful would happen--it was like my "chased by robbers" dreams, in which the robbers always catch me. But this time, after a period of terror, the show ended, and I was safely brought to the ground. (And then I went straight to the snack vendor for some bread...and this dream was before my diet!)
Dream #3: I was walking along a dock in a marina, and looking into the water, which was filled with menacing looking sea creatures--not sharks, but smaller, spiny things that were a lot more scary. All of a sudden I fell into the water, into the midst of all the terrifying creatures. I thrashed about and kept waiting for an attack, or to be eaten; but then I found steps to get out and escaped safely.
Dream #4 (just a few nights ago): I was in "Manhattan Beach" (looked nothing like the real thing), sunbathing and reading on a rocky outcropping at the coastline. The rocky area was just below an elevated pier complex with businesses. I was enjoying myself in a patio chair, when suddenly a huge wave came in and engulfed me; everything around me became ocean. I later realized it was a tsunami. I barely made it to the slope and up to the elevated area, above the inundation zone. I started back down to retrieve my stuff as the water began to recede, but everything was gone. I was very upset at losing not only my chair and book, but also something else that seemed terribly important, though I couldn't remember what it was. In the midst of my upset, though, I realized I had just survived a tsunami and was thrilled to be OK. I started walking uphill toward home. When I was almost there, I realized my keys had also washed away.
Though the last one had a late "gotcha," I'm really struck by how I always turn out OK in these dreams. I'm really hoping that my subconscious has a read on my overall health that's not accessible to the rest of me!
Friday, September 01, 2006
Diet milestone!
Forgot to post about my 3-week check-in with the nutritional oncologist. I lost 10 pounds in my first 3 weeks! She and I were both very impressed--she kept saying "wow" as she looked at the numbers, and then as she went through my food diary. I felt like I was a little permissive in my interpretation of the diet at times (read: I cheated), but she felt I'd been very faithful to it. Yay.
So--a third of the way there in just 3 weeks. I'm sure the next 20 pounds will be tougher, but at least the goal is that much smaller now.
An interesting note--my nutritional oncologist, Rachel, is also the n.o. working with Sheryl Crow following her breast cancer. (Add that to my surgeon, who operated on Suzanne Somers--I don't think you can dodge the one-degree-of-celebrity-separation here.)
And finally, thanks and welcome to all the friends and family who have joined me, either doing my diet with me or giving up some kind of indulgence themselves. It is great to have the company and support! Let's all get healthy!!
So--a third of the way there in just 3 weeks. I'm sure the next 20 pounds will be tougher, but at least the goal is that much smaller now.
An interesting note--my nutritional oncologist, Rachel, is also the n.o. working with Sheryl Crow following her breast cancer. (Add that to my surgeon, who operated on Suzanne Somers--I don't think you can dodge the one-degree-of-celebrity-separation here.)
And finally, thanks and welcome to all the friends and family who have joined me, either doing my diet with me or giving up some kind of indulgence themselves. It is great to have the company and support! Let's all get healthy!!
Watching the grass grow
So my hair should start growing back now. Any day now. Annnnnnnnny day.
They say growth starts about 3 to 6 weeks after chemo ends--that's some range! It's been 3 and a half weeks, and if you run your hand over my head, you can feel that it's rough, but not really hairy. Maybe it's like the 5 o'clock shadow of a teenage boy whose beard hasn't fully arrived yet.
Last night I had a great dream. I dreamt that one afternoon I reached up to my head and found hair! It was very dark brown, and curly, and about chin length. I didn't know it was there, but suddenly I was running my fingers through my own hair. Excited, I began telling people how I awoke that morning with beard-like stubble, but during the day my hair had grown out that much. It was quite wonderful. Now, today, I feel so dissatisfied, wanting that to be true.
A month or so ago, in my support group, a woman who'd just finished chemo complained of her own frustration with wanting to be all better, now, against the reality that getting better was a slow process. I sympathized at the time, but I didn't understand. Now I do.
Meanwhile, I am going to start the new Hair Watch 2006. In May, it was a hairloss watch. Now, it's a hair growth watch. It takes a lot for me to do this, but I am going to post photos of my progress (from the back--I do have limits). So here's the first one, taken last Saturday, at zero growth. When there are notable changes, the HW will be updated.
They say growth starts about 3 to 6 weeks after chemo ends--that's some range! It's been 3 and a half weeks, and if you run your hand over my head, you can feel that it's rough, but not really hairy. Maybe it's like the 5 o'clock shadow of a teenage boy whose beard hasn't fully arrived yet.
Last night I had a great dream. I dreamt that one afternoon I reached up to my head and found hair! It was very dark brown, and curly, and about chin length. I didn't know it was there, but suddenly I was running my fingers through my own hair. Excited, I began telling people how I awoke that morning with beard-like stubble, but during the day my hair had grown out that much. It was quite wonderful. Now, today, I feel so dissatisfied, wanting that to be true.
A month or so ago, in my support group, a woman who'd just finished chemo complained of her own frustration with wanting to be all better, now, against the reality that getting better was a slow process. I sympathized at the time, but I didn't understand. Now I do.
Meanwhile, I am going to start the new Hair Watch 2006. In May, it was a hairloss watch. Now, it's a hair growth watch. It takes a lot for me to do this, but I am going to post photos of my progress (from the back--I do have limits). So here's the first one, taken last Saturday, at zero growth. When there are notable changes, the HW will be updated.
Wednesday, August 30, 2006
Newly-busy days
So much going on! I just wanted to file a quick update here--not as verbose as usual, I hope.
First, I started teaching last week. It's nice to be back in the classroom, actually--reassures me that I can return to My Life, and not be stuck in the life that hijacked me almost 6 months ago. My first day was rough--I have two back-to-back 3-hour sessions on Tuesdays. In the first, I forgot to conserve energy, and went bouncing around the room the way I usually do. About 2 hours in, I was hit with chemo-style fatigue and wondered how I'd make it through the rest. In the second class, I sat on a chair almost the entire time. I told both classes about my health--the first, so we could arrange a plan for any time radiation might make me late for class, and the second, to explain why I sat on my ass the whole time. Interestingly, this week a student came to me to talk about breast cancer (usually it's to ask for job negotiation advice). His mom was just diagnosed and he wanted some reassurance, I think, and some tips for her.
Second, in the few days before radiation started, we squeezed in a quick trip to Yosemite. That, too, was a good return to life. I actually did all of the following in three days: a 2-hour horseback ride, a 2-mile hike (mostly downhill), and a 12-mile bike ride. In the past, this would not have been an especially active getaway for us, but I feel an enormous sense of accomplishment now. Now I just have to keep up the exercise! We got my bike tuned up before the trip, so it's ready to go.
Third, I started radiation on Monday. It is going fine. There are no side effects right away--those don't usually appear until the 2nd or 3rd week, apparently. It really is painless--a bit like sitting on the slide of a giant microscope that buzzes for about 45 seconds. If you're not smashed on the slide, you can imagine, that wouldn't feel like anything. Anyway, I am showering with Ivory soap and deodorizing with Tom's of Maine for the next 6 weeks, and I have an appetizingly-named cream to apply--it's called RadiaGel. Mmmmm.
Finally, since my diet has garnered lots of sympathy and support (thanks so much for that!!!), I'll let you know that I've made it through my first 3 weeks pretty well. At Yosemite, I sometimes had few good options, and I had three meals on our trip that I consider really cheating (fried [!] fish at one, scrambled eggs and waffles at another, a Quizno's sandwich at the third). Otherwise, it was not TOO hard to ask for my fish cooked without any oil or butter, and my vegetables steamed, and extra veggies instead of the rice. So it's worked out, and I've lost at least 5 pounds (maybe more, but that's using different scales, so who knows). I check in tomorrow and we'll see how it continues.
OK, that's it for now. Thanks for checking in. I don't feel "done" with all of this yet and I do appreciate the ongoing support, so much.
First, I started teaching last week. It's nice to be back in the classroom, actually--reassures me that I can return to My Life, and not be stuck in the life that hijacked me almost 6 months ago. My first day was rough--I have two back-to-back 3-hour sessions on Tuesdays. In the first, I forgot to conserve energy, and went bouncing around the room the way I usually do. About 2 hours in, I was hit with chemo-style fatigue and wondered how I'd make it through the rest. In the second class, I sat on a chair almost the entire time. I told both classes about my health--the first, so we could arrange a plan for any time radiation might make me late for class, and the second, to explain why I sat on my ass the whole time. Interestingly, this week a student came to me to talk about breast cancer (usually it's to ask for job negotiation advice). His mom was just diagnosed and he wanted some reassurance, I think, and some tips for her.
Second, in the few days before radiation started, we squeezed in a quick trip to Yosemite. That, too, was a good return to life. I actually did all of the following in three days: a 2-hour horseback ride, a 2-mile hike (mostly downhill), and a 12-mile bike ride. In the past, this would not have been an especially active getaway for us, but I feel an enormous sense of accomplishment now. Now I just have to keep up the exercise! We got my bike tuned up before the trip, so it's ready to go.
Third, I started radiation on Monday. It is going fine. There are no side effects right away--those don't usually appear until the 2nd or 3rd week, apparently. It really is painless--a bit like sitting on the slide of a giant microscope that buzzes for about 45 seconds. If you're not smashed on the slide, you can imagine, that wouldn't feel like anything. Anyway, I am showering with Ivory soap and deodorizing with Tom's of Maine for the next 6 weeks, and I have an appetizingly-named cream to apply--it's called RadiaGel. Mmmmm.
Finally, since my diet has garnered lots of sympathy and support (thanks so much for that!!!), I'll let you know that I've made it through my first 3 weeks pretty well. At Yosemite, I sometimes had few good options, and I had three meals on our trip that I consider really cheating (fried [!] fish at one, scrambled eggs and waffles at another, a Quizno's sandwich at the third). Otherwise, it was not TOO hard to ask for my fish cooked without any oil or butter, and my vegetables steamed, and extra veggies instead of the rice. So it's worked out, and I've lost at least 5 pounds (maybe more, but that's using different scales, so who knows). I check in tomorrow and we'll see how it continues.
OK, that's it for now. Thanks for checking in. I don't feel "done" with all of this yet and I do appreciate the ongoing support, so much.
Saturday, August 19, 2006
The new chapters open
It would be nice if ending chemo meant ending treatment altogether; ending the "cancer experience" and moving on with life. Alas, it is not so.
The final phases begin now. Radiation will start August 28 and last for 6 weeks; my nutritional intervention--let's call it that for now--started nine days ago and could last for months, if not years.
We went to the radiation oncologist ("rad onc" in oncology ingroup-speak) yesterday. The good news, since radiation treatments are 5 days a week during the 6-week period, is that I will go to a hospital in the South Bay, just 15 minutes away, rather than to USC. On the other hand, I was diagnosed and have gotten all of my treatments to date at USC. I feel an odd sense of dependence on that facility, and I feel uncertain and hesitant about going somewhere else. At the beginning, Noah and I weren't sure we would build a good rapport with the medical oncologist, Christy. In the end, I feel that Christy--along with Michelle and Lilia, the great nurses, and even Dean, who drew my blood perfectly week after week--was enormously caring, and we developed personal relationships and a strong sense of bonding.
The rad onc--an older male physician who did not invite me to call him by his first name, but for the sake of relative anonymity here I'll call him "Tom"--had a meeting to get to, and had a specific order in which he covered issues and gave his spiel, and questions were put off until their appropriate place in the spiel. He was professional but distant, and I won't see that much of him anyway. "Doctor days" are on Tuesdays, so I will see him on that day each week. (As for the fact that that's my long teaching day and thus the worst possible day in which to try to force in another appointment--too bad.) Most of this is psychological--Tom was recommended by my own providers at USC--and I am confident that I will receive top-notch care. But it's a difficult transition. When you are putting faith in people to save your life, I think you develop a bit of bias about them, and it's hard to feel like anyone else could possibly measure up.
So...radiation. The procedure itself is totally painless and quick. I go in Monday for a set-up appointment, where after numerous x-rays and CAT scans and lying with my arm over my head, the physicists will map out the correct angles for the machine to shoot radiation beams through my breast without hitting my heart or much lung. I'll get 2 to 6 tiny blue-dot tattoos in a square configuration to mark where the machine will line up. And I'll get instructions like, don't use deodorant (Tom's of Maine is OK), don't use talc, do use lots of this particular special moisturizer.
When I go in for each daily appointment, I'll lie back in exactly the same position (they use a foam mold to hold my arm in place, and the blue dots for alignment) while the technician spends about 5 minutes getting all the machinery set. Then, for about 2 minutes, the shooting of beams. That's it. This facility is apparently pretty good about getting people in and out, so overall there may be little impact on my days. Of course, it looks like I'll have to go in in the morning, and anyone who knows me knows that's a problem. For 6 weeks, 5 days a week, getting up early? Yikes.
The side effects are supposed to be fairly minimal, but so far every woman I know who's had radiation (there are several in my support group) reports at least some degree of burning. One had 3rd-degree burns. Seriously. Forgive a graphic moment--she had blood and pus oozing out of the area being radiated, and had to apply burn dressings all the time. They didn't stop or delay treatments, either--just kept going, and kept burning her.
No one else has reported anything as dire. In general, radiation seems to produce a sunburn by about week 3, and it gets progressively worse until a couple weeks after the end. Constant moisturizing and vigilance against scratching (which will be hard for me) are apparently key to minimizing trouble. I've gotten advice to wear very soft shirts and to eschew underwire bras--I don't think I've ever seen a bra in my size without an underwire, but they apparently exist--and to apply cortisone cream for the itching. Though fatigue is a standard side effect of radiation, "they" say that it's minor compared to chemo, and that post-chemo patients still just report feeling better and better as chemo recedes into the past.
So radiation will occupy my next 7 weeks; even longer than that will be The Diet. Way back when I got my 2nd oncology opinion, the doctor (very prominent nationally) recommended that I eventually work with the "nutritional oncologist" at her practice, who was part of a large multi-site study of nutrition and breast cancer treatment. If I have my numbers right, the study found that women on a very low-fat diet during or after their BC treatment were able to reduce their risk of recurrence by an average of 24%. For women whose tumors were not sensitive to estrogen--like me--risk was reduced by an average of 42%. All of this implies that my own risk of recurrence, 20%, could be lowered to something like 12-16% by following a similar low-fat diet.
I saw the nutritionist, Rachel, last week, and she gave me an even stricter diet. She has ordered me to lose 30 pounds right off the bat, since being overweight is also a risk factor in recurrence. (Presumably my weight was part of the algorithm for predicting the 20% risk, so losing weight by itself--without the low-fat diet--should push my risk below the 12-16%.) In addition, eating 20-30 grams of fiber per day also lowers risk beyond the low-fat diet. So I have no idea what my new number might be, but following Rachel's orders should really cut that 20% down substantially.
And that is something I have to keep reminding myself, because the diet is draconian. It basically involves protein (fish/tofu) and lots of vegetables, with a fiber cereal thrown in for breakfast--all in pretty tiny amounts. I don't know the caloric total, but it's got to be damn low. All foods are supposed to be as close to nature as possible, virtually no processing. Nonfat substitutes are verboten because they rely on chemicals. Green tea is a prominent feature. Though many of these characteristics are quite positive, a) it's a ton of work to eat without relying on processed foods, and b) I haven't been so hungry for so long in years.
It's odd to diet because my life depends on it. I'm used to diets being about appearance. I'm constantly tempted to throw the diet out the window and just eat, dammit, like usual. It's probably no surprise that I love food and that appearance has rarely been enough of a motivator to keep me from eating what I want. (The only exception in my life was my wedding--I did diet, and successfully, for that. And then on my honeymoon I started eating everything again.) But this time, my only motivation is to be sure that, at all the 3-month and then 6-month checks awaiting me in the next 5 years, I keep hearing "all clear," every single time. It's to be sure that I don't get another tumor in the same breast, which means mastectomy next time. It's to be sure that I don't get a tumor in the other breast, which means I do this all over again, or a metastasis somewhere else, which means I will probably die of breast cancer and be on chemo until the bitter end.
None of this makes it easier to endure the yawning pit in my stomach, or to watch Noah eat sandwiches or soy dream with chocolate syrup. But it is motivating. It's enough to keep me from rationalizing "just one" indulgence, all the fifty times a day that I'm tempted to take one. And more good news--the indigestion that plagued me during chemo has all but disappeared since I started eating this way.
Still, in some ways, this diet thing has felt harder for both me and Noah than the rest of the treatments. Those had a time boundary. This--well, losing 30 pounds will take a long time (though I'm somewhere between 4 and 6 down already, which is pretty fast). And once the weight loss is over, I still have to eat ultra lowfat indefinitely. It's just one of the ways in which cancer has changed my life permanently. Of course, I could make different choices, but I choose more life (thanks, Tony Kushner). And so add this to the list of things to remind me that there was my life before cancer, and my life after diagnosis, and they are not the same, and I don't ever, ever get to go back.
Anyway, treatment goes on. We've passed the worst suffering, I think, and I'm on the watch for hair to come sprouting from my head again, and that will be a happy occurrence. But I'm not done yet--this damn disease takes lives over for a long, long time, and I'm still in its clutches.
The final phases begin now. Radiation will start August 28 and last for 6 weeks; my nutritional intervention--let's call it that for now--started nine days ago and could last for months, if not years.
We went to the radiation oncologist ("rad onc" in oncology ingroup-speak) yesterday. The good news, since radiation treatments are 5 days a week during the 6-week period, is that I will go to a hospital in the South Bay, just 15 minutes away, rather than to USC. On the other hand, I was diagnosed and have gotten all of my treatments to date at USC. I feel an odd sense of dependence on that facility, and I feel uncertain and hesitant about going somewhere else. At the beginning, Noah and I weren't sure we would build a good rapport with the medical oncologist, Christy. In the end, I feel that Christy--along with Michelle and Lilia, the great nurses, and even Dean, who drew my blood perfectly week after week--was enormously caring, and we developed personal relationships and a strong sense of bonding.
The rad onc--an older male physician who did not invite me to call him by his first name, but for the sake of relative anonymity here I'll call him "Tom"--had a meeting to get to, and had a specific order in which he covered issues and gave his spiel, and questions were put off until their appropriate place in the spiel. He was professional but distant, and I won't see that much of him anyway. "Doctor days" are on Tuesdays, so I will see him on that day each week. (As for the fact that that's my long teaching day and thus the worst possible day in which to try to force in another appointment--too bad.) Most of this is psychological--Tom was recommended by my own providers at USC--and I am confident that I will receive top-notch care. But it's a difficult transition. When you are putting faith in people to save your life, I think you develop a bit of bias about them, and it's hard to feel like anyone else could possibly measure up.
So...radiation. The procedure itself is totally painless and quick. I go in Monday for a set-up appointment, where after numerous x-rays and CAT scans and lying with my arm over my head, the physicists will map out the correct angles for the machine to shoot radiation beams through my breast without hitting my heart or much lung. I'll get 2 to 6 tiny blue-dot tattoos in a square configuration to mark where the machine will line up. And I'll get instructions like, don't use deodorant (Tom's of Maine is OK), don't use talc, do use lots of this particular special moisturizer.
When I go in for each daily appointment, I'll lie back in exactly the same position (they use a foam mold to hold my arm in place, and the blue dots for alignment) while the technician spends about 5 minutes getting all the machinery set. Then, for about 2 minutes, the shooting of beams. That's it. This facility is apparently pretty good about getting people in and out, so overall there may be little impact on my days. Of course, it looks like I'll have to go in in the morning, and anyone who knows me knows that's a problem. For 6 weeks, 5 days a week, getting up early? Yikes.
The side effects are supposed to be fairly minimal, but so far every woman I know who's had radiation (there are several in my support group) reports at least some degree of burning. One had 3rd-degree burns. Seriously. Forgive a graphic moment--she had blood and pus oozing out of the area being radiated, and had to apply burn dressings all the time. They didn't stop or delay treatments, either--just kept going, and kept burning her.
No one else has reported anything as dire. In general, radiation seems to produce a sunburn by about week 3, and it gets progressively worse until a couple weeks after the end. Constant moisturizing and vigilance against scratching (which will be hard for me) are apparently key to minimizing trouble. I've gotten advice to wear very soft shirts and to eschew underwire bras--I don't think I've ever seen a bra in my size without an underwire, but they apparently exist--and to apply cortisone cream for the itching. Though fatigue is a standard side effect of radiation, "they" say that it's minor compared to chemo, and that post-chemo patients still just report feeling better and better as chemo recedes into the past.
So radiation will occupy my next 7 weeks; even longer than that will be The Diet. Way back when I got my 2nd oncology opinion, the doctor (very prominent nationally) recommended that I eventually work with the "nutritional oncologist" at her practice, who was part of a large multi-site study of nutrition and breast cancer treatment. If I have my numbers right, the study found that women on a very low-fat diet during or after their BC treatment were able to reduce their risk of recurrence by an average of 24%. For women whose tumors were not sensitive to estrogen--like me--risk was reduced by an average of 42%. All of this implies that my own risk of recurrence, 20%, could be lowered to something like 12-16% by following a similar low-fat diet.
I saw the nutritionist, Rachel, last week, and she gave me an even stricter diet. She has ordered me to lose 30 pounds right off the bat, since being overweight is also a risk factor in recurrence. (Presumably my weight was part of the algorithm for predicting the 20% risk, so losing weight by itself--without the low-fat diet--should push my risk below the 12-16%.) In addition, eating 20-30 grams of fiber per day also lowers risk beyond the low-fat diet. So I have no idea what my new number might be, but following Rachel's orders should really cut that 20% down substantially.
And that is something I have to keep reminding myself, because the diet is draconian. It basically involves protein (fish/tofu) and lots of vegetables, with a fiber cereal thrown in for breakfast--all in pretty tiny amounts. I don't know the caloric total, but it's got to be damn low. All foods are supposed to be as close to nature as possible, virtually no processing. Nonfat substitutes are verboten because they rely on chemicals. Green tea is a prominent feature. Though many of these characteristics are quite positive, a) it's a ton of work to eat without relying on processed foods, and b) I haven't been so hungry for so long in years.
It's odd to diet because my life depends on it. I'm used to diets being about appearance. I'm constantly tempted to throw the diet out the window and just eat, dammit, like usual. It's probably no surprise that I love food and that appearance has rarely been enough of a motivator to keep me from eating what I want. (The only exception in my life was my wedding--I did diet, and successfully, for that. And then on my honeymoon I started eating everything again.) But this time, my only motivation is to be sure that, at all the 3-month and then 6-month checks awaiting me in the next 5 years, I keep hearing "all clear," every single time. It's to be sure that I don't get another tumor in the same breast, which means mastectomy next time. It's to be sure that I don't get a tumor in the other breast, which means I do this all over again, or a metastasis somewhere else, which means I will probably die of breast cancer and be on chemo until the bitter end.
None of this makes it easier to endure the yawning pit in my stomach, or to watch Noah eat sandwiches or soy dream with chocolate syrup. But it is motivating. It's enough to keep me from rationalizing "just one" indulgence, all the fifty times a day that I'm tempted to take one. And more good news--the indigestion that plagued me during chemo has all but disappeared since I started eating this way.
Still, in some ways, this diet thing has felt harder for both me and Noah than the rest of the treatments. Those had a time boundary. This--well, losing 30 pounds will take a long time (though I'm somewhere between 4 and 6 down already, which is pretty fast). And once the weight loss is over, I still have to eat ultra lowfat indefinitely. It's just one of the ways in which cancer has changed my life permanently. Of course, I could make different choices, but I choose more life (thanks, Tony Kushner). And so add this to the list of things to remind me that there was my life before cancer, and my life after diagnosis, and they are not the same, and I don't ever, ever get to go back.
Anyway, treatment goes on. We've passed the worst suffering, I think, and I'm on the watch for hair to come sprouting from my head again, and that will be a happy occurrence. But I'm not done yet--this damn disease takes lives over for a long, long time, and I'm still in its clutches.
Tuesday, August 08, 2006
Oh, happy day!
I am done with chemo!!!!
We went in today for my last treatment. Let me say that again: LAST treatment.
Of course, it couldn't be a smooth day. Just as we were headed out the door, I noticed a bunch of shredded stuff in the backyard. This is not unusual--Kibble likes nothing more than to find tissues or something similar, and to tear them to shreds. So I went to take a look. And it wasn't a tissue. It was an ant trap.
The ant trap being a product that poisons a kind of animal.
We called the vet, and the manager told us we'd better bring him right in, along with the box. So we stared at each other, as the clock ticked quickly past when we had to leave in order to be on time. Without much idea of how to handle things, we dispatched Noah to the vet with Kibble, and I picked up the phone to call the oncology nurse and explore ways to let me drive myself home after chemo. (Usually, the benadryl dopes me up so much that it's impossible.)
Fortunately, while I was dialing, a call came in on the home phone from the vet's office. The manager had jumped the gun. Ant baits are not generally dangerous in small quantities, except that dogs can ingest bits of plastic that might obstruct the intestines. We could call the company to confirm this, keep him home, and observe him. Because my very generous friend Maia was lined up to come sit with Kibble for a few hours that day anyway, we were saved. Kibble could stay home, Maia could keep him under observation, and Noah and I could both go to chemo.
That's what happened. We left a half-hour late, which stretched a bit longer with some needed stops at the post office and bank. Once we got to USC, it was actually good. For once, we were just ushered through every step of the day without more than a 10-minute wait in between.
The blood draw was smooth, even if the receptionist teased me about still being too scared to look at the needle. It's true--the blood-draw sticks don't hurt that much now, but I do not want to see that needle puncture my skin. Just too yuck.
I had my last appointment (for 3 months) with Christy, my oncologist, and Michelle, the fabulous oncology nurse at the breast center. We talked through my symptoms for the past two weeks (bone pain, some abdominal pain, reflux, weak skin, numb soles of feet, almost all my eyelashes gone and eyebrows rapidly following--all quite normal, she said). They provided me a referral to a radiation oncologist down here in the South Bay, so I can do my 5 days a week closer to home. There was much commiserating about Kibble's ordeal, and showing of dog pictures--with Michelle, that is; not Christy, who heard our story and immediately wondered why the heck people bother to have pets.
Thanks to our terrifically fun trip to SF this past week with Sarah and Tom, my sister- and brother-in-law, I had really exhausted myself before this chemo and seem to be getting a slight chest cold. I was worried that this might keep me from getting my last treatment today, but both Christy and Michelle reassured me--if that's the right word--that Christy is "very aggressive" and doesn't delay chemo unless the person has a raging fever or is undergoing surgery. So just a few minutes after that appointment, Lilia came to escort us to the day hospital where I get my chemo.
I was one of only three patients, so I got to pick one of the best chairs. What makes a good chemo chair? Lots of space around it; being in a corner of the room with two contiguous solid walls (not dividers, which can get bumped); a set-up that makes it easy to reach my left arm (only myleft arm can get chemo, because they removed lymph nodes on the right) and allows Noah to sit on the right side or nearby in another chemo chair (chemo chairs are comfortable recliners, whereas the guest chairs are regular, uncomfortable chairs for sitting only); and good air circulation. I think today I got the 2nd best chair in the day hospital. Nice way to go out.
We had a little hiccup with the catheter insertion. Because my hand really hurt the last time she tried to use it, Lilia had switched to my forearm. But she couldn't get the catheter into the vein, even after some poking around for it. She felt really bad--she's so nice about it, and despite this issue, she's very good at inserting IVs. We switched back to my hand, and she got it right away, so no problem.
The Taxol drip got started at around 4pm; though Lilia was off at about that time, she stayed until close to 5, chatting with me about her wedding and making sure all was OK. When it was time for her to leave, we gave her a card with a couple of gift cards for her honeymoon in January. Nothing big! We tried to stay small so as to comply with any rules about gifts for hospital personnel, but wanted to do something toward her plans, after she has done so much for me.
The drip went on without incident until about 7pm, and then the late nurse came to remove the catheter from my hand. It bled more than usual, but I didn't care. I was DONE. Noah gave me a high five as the catheter came out, and then a big hug when I stood up. My face wedged itself into a huge, immovable smile. I felt a sense of joy and hopefulness that I've felt on few occasions, such as when I got my postdoc after taking a huge gamble and turning down another, sure-thing job, or when Noah, Kody, and I finally reached the bottom of a terrifying mountain scree-pile descent in Colorado which I was not at all sure we would survive.
And what's great is, I don't even have to go back tomorrow for the Neulasta shot that boosts my white cell counts. Because we are not trying to rush my blood counts back to normal in a short, two-week window, they can take the usual 3 weeks to recover fully; plus, my blood counts have been really good all along. So I am really done with chemo. No more procedures remain. Close that chapter.
My hair will start to grow back in about 3 weeks, I will start feeling better and keep getting better after a week or two, and all my crazy symptoms like numb, blistered feet will go away. Christy says I won't be fully normal for as much as a year, but I'll see steady improvement throughout that time. I will be meeting with a nutritional oncologist on Thursday, and now that I don't have chemo to ruin my associations with any new eating habits, I plan to start eating in a way that promotes my survival, and increasing my exercise. I can cut my 20% risk of recurrence to about 16% if I take diet and exercise seriously--and I feel I must.
So next...next I have radiation, which should be a piece of cake next to this. One woman in my support group had really terrible horrific burns, but I feel confident I'll escape that, mostly because she was on chemo at the same time (very rare). With my foot blisters, I see how body skin becomes weaker, and healing is much slower during chemo. Also, she had a full mastectomy, not a lumpectomy like me, and they had to aim the beam directly at her body. She got 'sunburned' on her back from where the radiation went through. I am hoping that the angle of radiation for me can be directed away from my torso. Well, we shall soon see. In any case, I've been told that there is fatigue associated with radiation, but it is minor compared to that from chemo--in fact, it's a function of having to go 5 days a week for 6 weeks as much as of the effects of the beam itself. And some women do not get any sunburn at all. More on radiation as it approaches. I should have my first appointment very soon, and then start treatments in about 3 weeks. If we have the schedule right, I would start on August 28 and finish on October 6. Sounds quite bearable.
After all, chemo is DONE! Did I mention that?? :-)
We went in today for my last treatment. Let me say that again: LAST treatment.
Of course, it couldn't be a smooth day. Just as we were headed out the door, I noticed a bunch of shredded stuff in the backyard. This is not unusual--Kibble likes nothing more than to find tissues or something similar, and to tear them to shreds. So I went to take a look. And it wasn't a tissue. It was an ant trap.
The ant trap being a product that poisons a kind of animal.
We called the vet, and the manager told us we'd better bring him right in, along with the box. So we stared at each other, as the clock ticked quickly past when we had to leave in order to be on time. Without much idea of how to handle things, we dispatched Noah to the vet with Kibble, and I picked up the phone to call the oncology nurse and explore ways to let me drive myself home after chemo. (Usually, the benadryl dopes me up so much that it's impossible.)
Fortunately, while I was dialing, a call came in on the home phone from the vet's office. The manager had jumped the gun. Ant baits are not generally dangerous in small quantities, except that dogs can ingest bits of plastic that might obstruct the intestines. We could call the company to confirm this, keep him home, and observe him. Because my very generous friend Maia was lined up to come sit with Kibble for a few hours that day anyway, we were saved. Kibble could stay home, Maia could keep him under observation, and Noah and I could both go to chemo.
That's what happened. We left a half-hour late, which stretched a bit longer with some needed stops at the post office and bank. Once we got to USC, it was actually good. For once, we were just ushered through every step of the day without more than a 10-minute wait in between.
The blood draw was smooth, even if the receptionist teased me about still being too scared to look at the needle. It's true--the blood-draw sticks don't hurt that much now, but I do not want to see that needle puncture my skin. Just too yuck.
I had my last appointment (for 3 months) with Christy, my oncologist, and Michelle, the fabulous oncology nurse at the breast center. We talked through my symptoms for the past two weeks (bone pain, some abdominal pain, reflux, weak skin, numb soles of feet, almost all my eyelashes gone and eyebrows rapidly following--all quite normal, she said). They provided me a referral to a radiation oncologist down here in the South Bay, so I can do my 5 days a week closer to home. There was much commiserating about Kibble's ordeal, and showing of dog pictures--with Michelle, that is; not Christy, who heard our story and immediately wondered why the heck people bother to have pets.
Thanks to our terrifically fun trip to SF this past week with Sarah and Tom, my sister- and brother-in-law, I had really exhausted myself before this chemo and seem to be getting a slight chest cold. I was worried that this might keep me from getting my last treatment today, but both Christy and Michelle reassured me--if that's the right word--that Christy is "very aggressive" and doesn't delay chemo unless the person has a raging fever or is undergoing surgery. So just a few minutes after that appointment, Lilia came to escort us to the day hospital where I get my chemo.
I was one of only three patients, so I got to pick one of the best chairs. What makes a good chemo chair? Lots of space around it; being in a corner of the room with two contiguous solid walls (not dividers, which can get bumped); a set-up that makes it easy to reach my left arm (only myleft arm can get chemo, because they removed lymph nodes on the right) and allows Noah to sit on the right side or nearby in another chemo chair (chemo chairs are comfortable recliners, whereas the guest chairs are regular, uncomfortable chairs for sitting only); and good air circulation. I think today I got the 2nd best chair in the day hospital. Nice way to go out.
We had a little hiccup with the catheter insertion. Because my hand really hurt the last time she tried to use it, Lilia had switched to my forearm. But she couldn't get the catheter into the vein, even after some poking around for it. She felt really bad--she's so nice about it, and despite this issue, she's very good at inserting IVs. We switched back to my hand, and she got it right away, so no problem.
The Taxol drip got started at around 4pm; though Lilia was off at about that time, she stayed until close to 5, chatting with me about her wedding and making sure all was OK. When it was time for her to leave, we gave her a card with a couple of gift cards for her honeymoon in January. Nothing big! We tried to stay small so as to comply with any rules about gifts for hospital personnel, but wanted to do something toward her plans, after she has done so much for me.
The drip went on without incident until about 7pm, and then the late nurse came to remove the catheter from my hand. It bled more than usual, but I didn't care. I was DONE. Noah gave me a high five as the catheter came out, and then a big hug when I stood up. My face wedged itself into a huge, immovable smile. I felt a sense of joy and hopefulness that I've felt on few occasions, such as when I got my postdoc after taking a huge gamble and turning down another, sure-thing job, or when Noah, Kody, and I finally reached the bottom of a terrifying mountain scree-pile descent in Colorado which I was not at all sure we would survive.
And what's great is, I don't even have to go back tomorrow for the Neulasta shot that boosts my white cell counts. Because we are not trying to rush my blood counts back to normal in a short, two-week window, they can take the usual 3 weeks to recover fully; plus, my blood counts have been really good all along. So I am really done with chemo. No more procedures remain. Close that chapter.
My hair will start to grow back in about 3 weeks, I will start feeling better and keep getting better after a week or two, and all my crazy symptoms like numb, blistered feet will go away. Christy says I won't be fully normal for as much as a year, but I'll see steady improvement throughout that time. I will be meeting with a nutritional oncologist on Thursday, and now that I don't have chemo to ruin my associations with any new eating habits, I plan to start eating in a way that promotes my survival, and increasing my exercise. I can cut my 20% risk of recurrence to about 16% if I take diet and exercise seriously--and I feel I must.
So next...next I have radiation, which should be a piece of cake next to this. One woman in my support group had really terrible horrific burns, but I feel confident I'll escape that, mostly because she was on chemo at the same time (very rare). With my foot blisters, I see how body skin becomes weaker, and healing is much slower during chemo. Also, she had a full mastectomy, not a lumpectomy like me, and they had to aim the beam directly at her body. She got 'sunburned' on her back from where the radiation went through. I am hoping that the angle of radiation for me can be directed away from my torso. Well, we shall soon see. In any case, I've been told that there is fatigue associated with radiation, but it is minor compared to that from chemo--in fact, it's a function of having to go 5 days a week for 6 weeks as much as of the effects of the beam itself. And some women do not get any sunburn at all. More on radiation as it approaches. I should have my first appointment very soon, and then start treatments in about 3 weeks. If we have the schedule right, I would start on August 28 and finish on October 6. Sounds quite bearable.
After all, chemo is DONE! Did I mention that?? :-)
Sunday, July 23, 2006
"Good" cancer?
I keep meaning to write about the title of this blog. There are lots of people--lots of doctors--who will say there is no such thing as a "good" cancer. This is a terrible disease and you just really do not want to hear that diagnosis, ever. On the other hand, we can certainly differentiate between a thyroid cancer, which can often mean a bit of treatment and then you go on with your life; and liver or pancreatic cancers, which tend to mean that you will be fighting hard with aggressive treatments for a few months, after which it is possible you may not even be here anymore.
When I was diagnosed with my Stage II-A breast cancer, part of the doctor's first sentence was, "...and we're gonna cure you." That word, cure, stood out prominently. It was wonderfully reassuring, especially coupled with my longstanding sense that breast cancer was a "treat-and-go-on" diagnosis. In the past, I had taken note of famous women who had it, but always those who survived. Betty Ford. Melissa Etheridge. Olivia Newton-John. Jill Eikenberry (who was my age when diagnosed). I always felt like we heard that these women had breast cancer, and then they were treated, and then they stayed around--in many cases, for decade after decade. My own aunt had it and recovered. Because of all this, breast cancer seemed like a mild setback, and I was relatively optimistic.
But it's really all about your perspective. A woman in my support group was devastated by her diagnosis (she's close to my age, and her cancer is not much worse than mine) because she had known several women in her life who had breast cancer, and virtually all of them died. She felt she'd been given a death sentence. And indeed, the bad news starts pouring out once you are paying attention. Linda McCartney, novelist Carol Shields, Wendie Jo Sperber, and Columbian singer Soraya are only a few of the famous who recently died of their breast cancer--the latter two, quite young. I have heard plenty of stories, now, of recurrences and metastasis, and when I found that my own risk of that was 20% even after chemo, I felt a lot of my optimism grow dark.
At this point, the optimism and the darkness take turns dominating my views. But overall, I'm glad I chose this title. I very much hope that the 80% chance that I have no recurrence prevails; I am grateful that I don't have one of the far more serious and worrisome cancers that send people to the Wellness Community support groups on the same night as mine. It is awfully easy to come across information that is terrifying, and to focus on the dangers that might lie ahead. I like having the constant reminder that I once thought of this as a pretty easy thing, and that the odds tell me that, in fact, it really might be.
When I was diagnosed with my Stage II-A breast cancer, part of the doctor's first sentence was, "...and we're gonna cure you." That word, cure, stood out prominently. It was wonderfully reassuring, especially coupled with my longstanding sense that breast cancer was a "treat-and-go-on" diagnosis. In the past, I had taken note of famous women who had it, but always those who survived. Betty Ford. Melissa Etheridge. Olivia Newton-John. Jill Eikenberry (who was my age when diagnosed). I always felt like we heard that these women had breast cancer, and then they were treated, and then they stayed around--in many cases, for decade after decade. My own aunt had it and recovered. Because of all this, breast cancer seemed like a mild setback, and I was relatively optimistic.
But it's really all about your perspective. A woman in my support group was devastated by her diagnosis (she's close to my age, and her cancer is not much worse than mine) because she had known several women in her life who had breast cancer, and virtually all of them died. She felt she'd been given a death sentence. And indeed, the bad news starts pouring out once you are paying attention. Linda McCartney, novelist Carol Shields, Wendie Jo Sperber, and Columbian singer Soraya are only a few of the famous who recently died of their breast cancer--the latter two, quite young. I have heard plenty of stories, now, of recurrences and metastasis, and when I found that my own risk of that was 20% even after chemo, I felt a lot of my optimism grow dark.
At this point, the optimism and the darkness take turns dominating my views. But overall, I'm glad I chose this title. I very much hope that the 80% chance that I have no recurrence prevails; I am grateful that I don't have one of the far more serious and worrisome cancers that send people to the Wellness Community support groups on the same night as mine. It is awfully easy to come across information that is terrifying, and to focus on the dangers that might lie ahead. I like having the constant reminder that I once thought of this as a pretty easy thing, and that the odds tell me that, in fact, it really might be.
Sunday, July 09, 2006
Taxol Dayz
Hi folks. I'm happy to report that my relatively long silence reflects a more positive chemo experience. After finishing my 4 cycles of AC (why do they call them "cycles"? I have no idea), I was switched to a drug called a "taxane," which is another of the "big guns" that are directed against more daunting tumors, such as mine. I'm now on Taxol for 4 cycles (1 down, 3 to go--the next is on Tuesday). And I'll take Taxol over AC any day.
The bad news is, I am one of the substantial minority of people who are allergic to Taxol. I've described my reaction before so I'll spare you that again, but now I can look forward to a jumbo dose of Benadryl every time I go in for chemo. (That, coupled with the Ativan they have lined up for the increasing anxiety I feel every time, pretty much renders me a semi-conscious rag doll.) After dose 1, for the first couple of days, everything felt pretty normal. Then on Thursday, I started having aches and pains. Initially, it felt like I'd played some hard hours of volleyball for a few days; my muscles were sore and my bones felt like they'd been used as battering rams. After a while, the pain got more intense.
I just lived with it for about 24 hours, but after a very sleepless night Thursday, and several hours of strong waves of pain on Friday, I called the oncology staff. A few hours later, I downed my first Vicodin, which took the edge off but didn't bring me below the "bearable" threshold. After that, I upped the dose to two Vicodin, and that pretty much wiped out the pain. Two days of constant Vicodin (with accompanying wooziness and inability to drive), one day of sporadic half-doses, and then the pain mostly went away. With no nausea and no other major side effects (a little--very little--indigestion was the only one remaining), I actually started to feel almost normal! True, my energy is still way below par. But being on Taxol--so far--has really been so much better. Even my brain is working a bit better.
In the past week, we've celebrated the 4th of July and our 6th wedding anniversary (on the 8th). Of course, the meaning of "celebrate" is different this year. In our lives B. C. (before cancer), we would probably have gone out of town somewhere for the whole stretch, and engaged in some fun activities (hiking in Yosemite; kayaking and snorkeling at Catalina Island). At the very least, we'd both have played volleyball at the beach or some such active pursuit. Now, I don't think I could last 10 minutes playing volleyball in the sand; my half-hour walks are taxing, and if I try to do too much during a day I just get wiped out--usually in an instant, when I don't expect it.
So on the 4th we had to be contented with fireworks and dinner--not bad, really. The Redondo Beach fireworks, launched from a barge just off the pier, were so close to our house that we walked down to the edge of the marina with Kibble and watched the display over all the tethered boats. It was quite charming and uncrowded, and Kibble didn't show any fear of the explosions--in fact, he didn't seem to care at all, which was great.
I'd prepared burgers, asparagus, and goat-cheese scalloped potatoes, but when Noah went to light the grill and make the burgers, he discovered that our gas tank was empty. So we packed up the food for the next day, and went to the Manhattan Beach Brewery for a late dinner.
Yesterday, for our anniversary, we had dinner with friends Paul and Leanne, who live out in the Valley (but--lucky for them, not for us--are moving back home to British Columbia in the next few months), and Maia. Kibble got to come again, and frolic in the backyard with Paul and Leanne's golden retriever puppy, Brodie. It was a very pleasant evening, and good to spend our anniversary with other people--just as we spent our wedding day.
My mom comes out to visit on Wednesday, for a week. My dad was here just a few weeks ago, too, and a week after my mom's departure, Noah's sister Sarah and her husband Tom will be here. Through the time that remains, for chemo #6 I get a visit from mom, for chemo #7 we get a visit from Sarah and Tom (with a quick trip to SF thrown in), and then I will only have one last treatment before I am done. That light at the far end of the tunnel is getting bigger and brighter, and thanks to the Taxol I feel like I'm picking up speed.
The bad news is, I am one of the substantial minority of people who are allergic to Taxol. I've described my reaction before so I'll spare you that again, but now I can look forward to a jumbo dose of Benadryl every time I go in for chemo. (That, coupled with the Ativan they have lined up for the increasing anxiety I feel every time, pretty much renders me a semi-conscious rag doll.) After dose 1, for the first couple of days, everything felt pretty normal. Then on Thursday, I started having aches and pains. Initially, it felt like I'd played some hard hours of volleyball for a few days; my muscles were sore and my bones felt like they'd been used as battering rams. After a while, the pain got more intense.
I just lived with it for about 24 hours, but after a very sleepless night Thursday, and several hours of strong waves of pain on Friday, I called the oncology staff. A few hours later, I downed my first Vicodin, which took the edge off but didn't bring me below the "bearable" threshold. After that, I upped the dose to two Vicodin, and that pretty much wiped out the pain. Two days of constant Vicodin (with accompanying wooziness and inability to drive), one day of sporadic half-doses, and then the pain mostly went away. With no nausea and no other major side effects (a little--very little--indigestion was the only one remaining), I actually started to feel almost normal! True, my energy is still way below par. But being on Taxol--so far--has really been so much better. Even my brain is working a bit better.
In the past week, we've celebrated the 4th of July and our 6th wedding anniversary (on the 8th). Of course, the meaning of "celebrate" is different this year. In our lives B. C. (before cancer), we would probably have gone out of town somewhere for the whole stretch, and engaged in some fun activities (hiking in Yosemite; kayaking and snorkeling at Catalina Island). At the very least, we'd both have played volleyball at the beach or some such active pursuit. Now, I don't think I could last 10 minutes playing volleyball in the sand; my half-hour walks are taxing, and if I try to do too much during a day I just get wiped out--usually in an instant, when I don't expect it.
So on the 4th we had to be contented with fireworks and dinner--not bad, really. The Redondo Beach fireworks, launched from a barge just off the pier, were so close to our house that we walked down to the edge of the marina with Kibble and watched the display over all the tethered boats. It was quite charming and uncrowded, and Kibble didn't show any fear of the explosions--in fact, he didn't seem to care at all, which was great.
I'd prepared burgers, asparagus, and goat-cheese scalloped potatoes, but when Noah went to light the grill and make the burgers, he discovered that our gas tank was empty. So we packed up the food for the next day, and went to the Manhattan Beach Brewery for a late dinner.
Yesterday, for our anniversary, we had dinner with friends Paul and Leanne, who live out in the Valley (but--lucky for them, not for us--are moving back home to British Columbia in the next few months), and Maia. Kibble got to come again, and frolic in the backyard with Paul and Leanne's golden retriever puppy, Brodie. It was a very pleasant evening, and good to spend our anniversary with other people--just as we spent our wedding day.
My mom comes out to visit on Wednesday, for a week. My dad was here just a few weeks ago, too, and a week after my mom's departure, Noah's sister Sarah and her husband Tom will be here. Through the time that remains, for chemo #6 I get a visit from mom, for chemo #7 we get a visit from Sarah and Tom (with a quick trip to SF thrown in), and then I will only have one last treatment before I am done. That light at the far end of the tunnel is getting bigger and brighter, and thanks to the Taxol I feel like I'm picking up speed.
Sunday, July 02, 2006
The meaning of life
Having cancer is like coming to a roadblock with a flashing sign that says “mortality.” Although I should get through this and be fine, nonetheless my life expectancy has taken a hit, and my chances of developing metastatic cancer have gone from less than 1% to 20%. So I have to start thinking about what I want from my life, knowing that I can’t be as comfortable as most people that I have years and years and easy years stretched out in front of me.
Let’s say that I only have 5 more years to live (who knows?). How do I want to live them? Well, two answers: I want to be sure I don’t take for granted the people in my life, and I want to be sure I can say, at the end, “I lived as fully as I could.”
It’s an awkward time to be facing this question. I’m halfway through the trek to tenure, and this is the time when most people at my stage forego having lives to invest in their careers. It’s hard to get tenure without that single-minded devotion, and I could live for another 40 years or more, and if so I will want to establish a solid career. But if I died in 5 years, and all I’d done with my time was sit in front of the computer—well, that would be fodder for regret!
What’s interesting about this, to me, is that this is the calculus that we should all engage in anyway. Having cancer has changed my odds, but it hasn’t touched the fundamental uncertainty that we all have about how long our lives will last, nor the truth that any of us could die, for any number of reasons, at any time. My tenure clock answer today—which should be the exact same answer that I gave last year—is that I will work hard, and strive, and believe that there is a future in which I’ll be well served by seeking tenure. I’ll spend a substantial amount of time working (and thank the stars that I’ve chosen work I find enriching and inherently rewarding). But I’ll also take time off, I won’t kill myself on projects I find soulless, I’ll play volleyball and go on vacations and read books for pleasure. And, with resolution #1 in mind, I’ll spend plenty of my time with people I enjoy—in the past, this was the first to go, when I had “work to do.” Now that response can’t be so knee-jerk.
Everyone faces the same conundrum, really—it’s just staring me down with a bit more intensity. To what extent do we live for the future, and to what extent do we live for today? In fact, we have to do both. It may suck to be reminded of that—but at least I have plenty of time to do something with the reminder.
Tuesday, June 27, 2006
Nurses really matter.
The nurses matter because, after the doctor writes her orders, they are sent over to nurses who actually do everything. The nurse assigned to you for the day will be the one to find a vein, to stick a catheter into that vein, to sit and push toxic chemicals through the catheter into the vein, to check on you to be sure your arm is not swelling or reddening and your face isn't flushing. She'll talk to you and comfort you and explain all the side effects and then, later, take out the catheter and wrap up your hand so it doesn't bleed, and send you home.
The good ones get the needle stick on the first try.
The bad ones moan about your inconvenient veins and muddle around a bit under your skin...with a sharp object.
The good ones know that all the fluids, both hazardous and harmless, can hurt going in. So they set saline drips to be relatively slow, and sit with you to push ver-r-r-r-r-ry slowly, by hand, anything that is a real problem.
The bad ones have somewhere else to be, and just shove that plunger down quickly.
The good ones think about how your arm should be placed on its pillow, how the lines are draped (to stay out of our way); they place their warm hands, for heat, on your forearm when the chemicals are stinging.
The bad ones figure you can do all that yourself.
The good ones remember, week to week, that you are afraid of needles and don't like to watch that catheter being inserted. They remember that you don't want a warning, thanks--just stick it in while you look at the opposite wall. They notice when your anxiety is getting worse each time, and making your stomach upset for no other reason, and they recommend Atavan to help out, and then contact the oncology staff to get it prescribed. And then they give you a whole pill.
The bad ones don't notice any of this stuff, although they'll let you look away during the needle sticks.
The good ones stand there with nothing else to do, really, for 15 minutes to watch you and ask you questions when you get a new drug. Do you feel funny? Any changes? When you report that yes, on this new drug Taxol you are experiencing a tightening in your chest (harder to breathe) and these bizarre, spasmodic, pulsing pains in your lower back, she runs to the pharmacy and bangs on the window to get your Benadryl, and then slowly, slowly, pushes it into the saline drip (having turned off the Taxol for a while) and soothes you as the symptoms subside. She lingers more, waits to be sure you feel okay. When she restarts the Taxol (because that's what they do--no one is deterred by a little allergic reaction), she watches carefully again, asks all the questions, smiles at how groggy you're getting thanks to Atavan and a huge dose of IV Benadryl, doesn't leave until you have taken in 25cc's and it's clear you'll be OK this time.
The good ones are off shortly after 4, but say they can stay until 5 today (since your allergy problems didn't even resolve until after 4:15) so they can keep checking. They make sure to hand off smoothly to the nurse who will stay late, until almost 8pm, since your drip is 3 hours long and has to go slowly at first.
The good ones smile and laugh, tell you funny stories about movies they went to and happy stories about their upcomming weddings. They answer all questions with confidence. They have their share of complaints about the hospital's current bureaucratic admin changes, but they focus on the positive: "Change is always hard; we'll just learn it and we'll be fine." They tell stories of their own families' cancer histories, or their own; they talk about their years of experience giving chemotherapy, and why they do it, and the best ones have pet peeves that involve shirking on quality patient care, so you know you're in good hands.
Today's nurse, Lilia, who is the best nurse and whom I request, now (having learned my lesson), every time--told another story of a patient who was rude to her, who dropped her newspaper and told the doctor, as he bent to pick it up, "Don't worry--the girl will get it." She meant Lilia, who heard it and got all her ire raised. What a fool was this woman. She is still coming in to USC, and now the very best oncology nurse there--the one who can make sure you don't hurt, when let me tell you, other nurses make you hurt--doesn't like her. What a stupid and avoidable mistake.
The nurses make all the difference. Lilia stands between me and repeated pain. I feel so lucky to have found her (on my first day of chemo!) and so smart to continue requesting her. I hope she is paid extremely well, and I'm sure she's not. But she'll be able to look back on her life, and say honestly and deservedly, "I lived well, I did something important, I made a difference."
The good ones get the needle stick on the first try.
The bad ones moan about your inconvenient veins and muddle around a bit under your skin...with a sharp object.
The good ones know that all the fluids, both hazardous and harmless, can hurt going in. So they set saline drips to be relatively slow, and sit with you to push ver-r-r-r-r-ry slowly, by hand, anything that is a real problem.
The bad ones have somewhere else to be, and just shove that plunger down quickly.
The good ones think about how your arm should be placed on its pillow, how the lines are draped (to stay out of our way); they place their warm hands, for heat, on your forearm when the chemicals are stinging.
The bad ones figure you can do all that yourself.
The good ones remember, week to week, that you are afraid of needles and don't like to watch that catheter being inserted. They remember that you don't want a warning, thanks--just stick it in while you look at the opposite wall. They notice when your anxiety is getting worse each time, and making your stomach upset for no other reason, and they recommend Atavan to help out, and then contact the oncology staff to get it prescribed. And then they give you a whole pill.
The bad ones don't notice any of this stuff, although they'll let you look away during the needle sticks.
The good ones stand there with nothing else to do, really, for 15 minutes to watch you and ask you questions when you get a new drug. Do you feel funny? Any changes? When you report that yes, on this new drug Taxol you are experiencing a tightening in your chest (harder to breathe) and these bizarre, spasmodic, pulsing pains in your lower back, she runs to the pharmacy and bangs on the window to get your Benadryl, and then slowly, slowly, pushes it into the saline drip (having turned off the Taxol for a while) and soothes you as the symptoms subside. She lingers more, waits to be sure you feel okay. When she restarts the Taxol (because that's what they do--no one is deterred by a little allergic reaction), she watches carefully again, asks all the questions, smiles at how groggy you're getting thanks to Atavan and a huge dose of IV Benadryl, doesn't leave until you have taken in 25cc's and it's clear you'll be OK this time.
The good ones are off shortly after 4, but say they can stay until 5 today (since your allergy problems didn't even resolve until after 4:15) so they can keep checking. They make sure to hand off smoothly to the nurse who will stay late, until almost 8pm, since your drip is 3 hours long and has to go slowly at first.
The good ones smile and laugh, tell you funny stories about movies they went to and happy stories about their upcomming weddings. They answer all questions with confidence. They have their share of complaints about the hospital's current bureaucratic admin changes, but they focus on the positive: "Change is always hard; we'll just learn it and we'll be fine." They tell stories of their own families' cancer histories, or their own; they talk about their years of experience giving chemotherapy, and why they do it, and the best ones have pet peeves that involve shirking on quality patient care, so you know you're in good hands.
Today's nurse, Lilia, who is the best nurse and whom I request, now (having learned my lesson), every time--told another story of a patient who was rude to her, who dropped her newspaper and told the doctor, as he bent to pick it up, "Don't worry--the girl will get it." She meant Lilia, who heard it and got all her ire raised. What a fool was this woman. She is still coming in to USC, and now the very best oncology nurse there--the one who can make sure you don't hurt, when let me tell you, other nurses make you hurt--doesn't like her. What a stupid and avoidable mistake.
The nurses make all the difference. Lilia stands between me and repeated pain. I feel so lucky to have found her (on my first day of chemo!) and so smart to continue requesting her. I hope she is paid extremely well, and I'm sure she's not. But she'll be able to look back on her life, and say honestly and deservedly, "I lived well, I did something important, I made a difference."
Sunday, June 18, 2006
Aloxi is my friend
It's not like I've felt as "good" as in the first two cycles, but we've managed to avoid the horror of the third cycle, and I'm sure it's thanks to Aloxi, the new anti-nausea drug. Well, that and the acu-stimulant wristband that Rick and Joanie sent me (thanks, guys!!), which got me through a couple of days when I think I'd have had the nausea otherwise.
Supposedly, I get to actually get better now--I'm done with AC, and the Taxol is not supposed to cause nausea. So I am looking forward to a positive trajectory. It's amazing how much hope that provides.
Supposedly, I get to actually get better now--I'm done with AC, and the Taxol is not supposed to cause nausea. So I am looking forward to a positive trajectory. It's amazing how much hope that provides.
Wednesday, June 14, 2006
Finished with AC!
Well, I am halfway done with chemo.
YAY!!!!!
I had my last AC treatment yesterday, and since the next drug (Taxol) is not supposed to cause nausea, it is really a positive to make this transition. Not to mention that the number of remaining treatments will become smaller than the number completed--definitely good for the psyche.
When I reported on my tough experience last time, my oncologist decided to switch my pre-chemo anti-nausea drip to a new one called Aloxie (sp??). So far, that one seems to be working pretty well. Of course, it usually takes a day or two for misery to kick in, but I'm in less need of my nausea pills this time. Crossing fingers.
But seriously...halfway done. Finished with AC. Those are happy things.
YAY!!!!!
I had my last AC treatment yesterday, and since the next drug (Taxol) is not supposed to cause nausea, it is really a positive to make this transition. Not to mention that the number of remaining treatments will become smaller than the number completed--definitely good for the psyche.
When I reported on my tough experience last time, my oncologist decided to switch my pre-chemo anti-nausea drip to a new one called Aloxie (sp??). So far, that one seems to be working pretty well. Of course, it usually takes a day or two for misery to kick in, but I'm in less need of my nausea pills this time. Crossing fingers.
But seriously...halfway done. Finished with AC. Those are happy things.
Subscribe to:
Posts (Atom)
