11 posts tagged “chemo”
I spent the past few days cleaning house, and the last few hours paying bills and otherwise tying up loose ends in preparation for entering treatment this week, possibly today.
We're "going naked", as the oncologist likes to say. No Tarceva, Alimta, or Aredia. EEK! "Take the leap of Faith!", is what he wrote on my after-visit summary. The clinical trial nurse says, "You do need to celebrate this."
Early morning rambling warning!
I feel slightly confused, a bit like the weather, which is cloudy and muggy and warmish. I laugh at Anthony Bourdain, who could eat Balinese roast suckling pig till he loses consciousness and proclaims it the best he's eaten (and he gives a rundown of all his pork place highlights). I can certainly relate to his feeling that it's time to stop the madness and stay in paradise. I'm suddenly drawn to Bali, feeling deeply the insight of his commentary. But I digress.
One comrade lost in battle while another stands at the front lines again.
I've always been so stoic, so why now do I swell with tears, reflecting on these events? I began reading a couple of blogs a year ago, when first diagnosed, one called Cancer News Watch, and the other by that author's wife, called Too Sexy for my Hair. Both blogs were basically about a woman named Lori.
I've mostly lurked on the blogs, as Lori's posts were relatively few and far between. But between the two (blogs) I've formed a picture of the 5 year struggle she's had since being diagnosed with cancer of an unknown origin, 7 weeks after their wedding. Her primary tumors were in her lungs and liver, and she'd tried many chemo regimens, including Navelbine, 5FU, Adriamycin, Cytoxan, Tarceva, Avastin---drugs I'm either familiar with or may someday have to take. Now and then she'd take a trip---to Bali and Hawaii. She went in May, accompanied by an oxygen tank, and when she got back, she was in partial remission. She attributed it, in part, to the Brunswig diet she'd been on, containing cottage cheese and flax oil. That was her last post, in July, and it was optimistic.
Lori died on October 27th, at the age of 31, after a 3 month blog silence. I wish I knew how it unfolded, but I know I won't be writing about my own death when it's imminent. And it's much too much for her husband Cary, at any time soon, anyway, to share with the world the last few months of his beloved's life. It's overwhelming.
Concurrent to this is an event even closer to home. A friend in much the same situation as I fights for her life, and she too is incredibly young. The drug Tarceva became ineffective for her after 9 months. She's now on chemo, similar to what I had on the 1st round, except the main agent is the one I'm on now. Will she live to finish grad school, go back to traveling and running marathons, live more of life?
I am reminded of my mortality, yes, but what is intensified is the unfairness, especially of those who view our disease, cancer in the lungs, as something we brought on ourselves. November is Lung Cancer Awareness month, and there are no grocery checkers incessantly bugging for donations to Lung Cancer research, there isn't mass merchandising of products whose proceeds will go towards it, and people who smoke just continue to do so, even in the presence of those made ill by their actions. Yet Lung Cancer kills more women than Breast Cancer, and even if it's detected early enough to be removed by surgery, the 5-year survival rate is still only 14%, or less. This makes me bitter and sad, and reluctant to discuss the topic, as it probably bores the daylights out of everyone.
Cancer is so abstract, even those who know me and think I'm doing well occasionally offend by insinuating that I'm well enough to travel and spend more energy and time maintaining relationships because of my illness. I can barely sit up, some days, much less deal with the myriad slings and arrows of impending financial doom. (One never knows) But my purpose is not to rant.
If I'm amazed at my 15-month survival, I'm awed by Lori's 5-year fight. I know N's will to live is strong. Let her body be as strong as her will might forge it. And let her spit in the face of those who say she brought it upon herself, or she's lucky she doesn't have some other kind of cancer. Cancer is not lucky.
Thanks for your patience, folks. I know it's been awhile. Bit of a rough patch there. My face may not recover from the effects of cancer medication. I'm afraid it takes a bit of getting used to, this new look. There's always makeup, but coverage of the magnitude required looks quite unnatural. Anyone with tips on this, please come forward. I may need to invest in a good putty knife and an economy-sized jar of concealer. Oh well, it's the price for more time and breathing. Did I mention the rash is moving down my body? Most uncomfortable. I've yet to find the magic cocktail of moisturizers that will help my poor, thirsty skin while not causing a break out.
The chemo agent (Alimta) has its own side effects---an altogether different type of rash, exacerbating the already exaggerated dryness of my skin, and a strange fatigue combined with gastric disturbance and oral sensitivity. I can truly say this is much worse than my first-line treatment with platinum.
My hair seems to be hanging on, if feebly. Knock on wood. I'm told it will stop growing, however.
Vanity is a weird thing. I never thought I was all that vain---I didn't care when my big hair fell out, and although it's strange that my hair is now so straight and thin, I don't fret. My husband misses the hair, I think. But when it comes to one's face....it's personal. I don't recognize the face in the mirror. Even with makeup, which I never wore that much of (except in the 80's'). I am self-conscious around my husband---I imagine he sees every red spot on my face (and it's a sea of spots). I've started to think of working out, since I can now breathe. Maybe if I get a hot body (wot?), he won't notice my face? Maybe I should just work on my sense of humor and sod the rest of it. And bake lots of cookies.
I should just enjoy the time I have left and quit worrying about how I look! Right, that's the ticket.
And I can thank Tarceva for that. Finally.
So I was a bit whiny and dark in that last post. That may come around again later, but for now things started looking up when I got that little bottle with the green label, the one that Genentech will provide for 2 years, thanks to being reinstated in the clinical trial.
After about 5 days I had zits, but by golly, I could walk, talk, breathe...I had the energy to do those things because I wasn't coughing myself into oblivion. I could sleep through the night without pain. It was amazing. Of course, I need to give up caffeine now---I get so wired---and spicy foods are starting to hurt me again. But hey, I CAN BREATHE!
Now, I know my oncologist is trying to zap the disease as quickly as possible so I can live a little before the Tarceva stops working, so he's added Alimta anyway. I got the first cycle yesterday. Today I feel ok, but my chest feels congested and my back's starting to hurt again. I hope this isn't undoing all the good things Tarceva was doing for me.
Clinical trials to test the safety and efficacy of this drug combo just started recruiting in March 2007, in Austria, Hungary, and Spain. I couldn't find any openly available data on the use of Alimta-Tarceva combination---on the medical research sites maybe, but they're inaccessible without an account. This makes me apprehensive---the trials don't end until 2009. It's a bit late to be fretting, I guess, but it irritates the control freak in me that I don't have any solid evidence that these meds don't conflict, although they're both targeted agents.
I'm hopeful this means I'll be able to travel after all, this year. It has to be this year---one never knows about next year. For now I'm happy to be able to do rudimentary things without having to stop and mouth-breathe. The rash will eventually turn into a full-blown appearance of bad acne, but I think: I've had pretty decent skin all my life. I can handle zits in exchange for breathing, right?
As long as I don't scare my husband away, things will hopefully be ok.
"I can't cure you."
The words tumbled out of his mouth, in opposition to the more hopeful sentiments of past visits, where his goal was to get me to scuba dive again, "Even if it's just a matter of putting the gear on, going down, and coming back up." Dr. Simmons was a little more guarded than usual, possibly because our visit was interrupted by another Taxol patient reaction.
I've been coughing, with shortness of breath, for 9 weeks. My scan was "good" though, so the complaint fell by the wayside. It's escalated, and I mentioned the similarity of my walk in SF last week to the experiences I had prior to diagnosis. I was worried. It's a tough situation because of all the tree pollen in the air. I have infamous allergies to trees (sad, they're one of my favorite things), but they've always manifested as hay fever. I've never been a "cougher" until this illness struck.
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I began that post on the 20th of April but couldn't finish it. Too many distractions, my brother was up for a week, then I had my bone treatment which was followed by what I can only guess was a horrendous incidence of food poisoning. I just wasn't feeling it (the post). And I'm still not, but I had my 6-week scan today, and my next onco visit/chemo treatment is on the 9th, so this needs legs.
April 18th's visit was markedly different from past appointments, where I was doing well and we all sort of breathed a sigh of relief until next time. The doc listened to my lungs and said they sounded fine. When I asked about traveling to Hawaii, though...he was reserved. In the past he'd said, "Why can't you?", when asked. This time he had his assistant place the oxygen sensor (?) on my finger and walk me around the corridors a couple of times, ostensibly to test lung function. The results were alarming. My oxygen level dropped to 83 (below 88 is unacceptable). The nurse was in disbelief. She thought perhaps the finger thing had slipped off or I really was on the verge of passing out. We did it again, at a slower pace. My pulse shot to 101, but my O2 level stayed at 99. Still, it was cause for concern. I was told I could fly to Reno or Oregon , but New York was not recommended. Therefore, flying to Hawaii is out. At least for now.
The moral of the story is, don't put off till tomorrow what you could've done yesterday, right after chemo. Berating myself for going to NY instead of Hawaii at Christmas accomplishes nothing, but I'll probably be doing that in my sleep.
The clinical trial nurse will be on vacation next week. I usually visit
with her when she replenishes my study drug (the placebo which is supposed to
be Tarceva). I've told her of the cough. "Well, since you're
symptomatic, we may have to shift gears even if the scan is ok." In
not so many words, this means "end of trial". Any treatment
outside the protocol ends the clinical trial.
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So tonight I caught Ted Koppel's documentary, Living With Cancer, on the Discovery Channel. His best friend Leroy Sievers had lung cancer, and had undergone initial chemotherapy. During a 3-week break, the cancer metastacized to his spine. Not till the end of the show do you find he had transferred to John Hopkins for treatment after this occured.
The show follows Leroy's path through second-line treatment. He begins a 9-cycle run of chemo, and at some point, one of the 3 lung tumors grows by 50%. I wish they would've mentioned what he received, but maybe that would cause an uproar among the masses not receiving said combinations. Surprisingly, nothing about possible clinical trials is ever mentioned. Also, nothing about the type of lung cancer he has, and whether it was caused by smoking or not. Maybe it doesn't matter, but to us non-smokers, it kind of does. Lung cancer is severely underfunded due to the stigma that only smokers or folks exposed to asbestos get it. Lung cancer deaths are 4 times greater than the next largest killer---colorectal cancer, but it's never divided into smoker/nonsmoker deaths. Research funding is about a quarter of what it is for breast cancer. And no one's doing fundraisers or marathons for lung cancer, mostly due to the stigma.
Now, this is vague---but now that chemo is no longer a treatment option, the oncologist (a "fellow", or oncology resident) decides to radiate the lesion on Leroy's spine (is this a quality of life decision?), thus leaving him with "just" the 3 lung tumors. He is then told to wrap it up---they can't do anymore for him. It's time to get his legal papers in order. Again, more vagueness---all of a sudden, this radiation oncologist appears and offers to use a fairly new procedure on him: Radiofrequency ablation. It's an outpatient procedure, and has some risks, not the least of which is the lack of clinical trials proving the efficacy of the method. They stick the needle in his tumors, send electricity through---the tumor is fried to a crisp. It's done, no complications. This film segment is fairly short, including Leroy's interview in the recovery room. How did Dr. Georgiatus (the radiation oncologist) get into the picture? Did Leroy do lots of last ditch attempts to find other treatments? Did one of his many connections come through with the name of the mad scientist in the basement? Leroy's oncologist seems almost at odds with the whole thing.
Suddenly, at 17 months after diagnosis, Leroy is cancer-free. Not cured, Leroy is careful to say. But scans are clean, for now. At a commercial break, I google John Hopkins and Radiofrequency Ablation. I get nothing. There's info about it from the National Institutes of Health, but nothing about it at John Hopkins. The show then goes live with a townhall meeting set-up, and there's Leroy with Elizabeth Edwards and Lance Armstrong (whose now-legendary story prefaces the documentary). Questions are fielded, but not much more new information. Lots of encouragement to blog.
I watched the whole cotton-pickin' 3 hours. The show is about feelings and not as informative as I
thought it might be. It's a personal piece, I guess. Much of what
Leroy went through and feels is on the mark and spot on, so it deserves at least a "B". However, for totally vague
information and lack of discussion of treatment-related issues, it's going down to a C+ (for being made). Not much solid
info about "living with cancer". Leroy never discussed how he
overcame his nausea or his bouts of sadness or how his treatment decisions were limited by being unresectable, etc, but I think he says it's all in his blog.
His girlfriend(?) speaks up at the end, but prior to that, one doesn't even realize she exists. I believe the show replays on the 7th...check your
local Discovery Channel listings.
Edit: A counterpoint to the documentary is Jonathan Alter's article in the April 9 issue of Newsweek, also called "Living with Cancer." Again, it includes an interview with Elizabeth Edwards and a piece with Lance Armstrong. It contains a bit more information than the show, but the article basically concedes that this is a good moment for media attention. I note a lack of opinion on all sides as to the government's diversion of funds from research to the war in Iraq.
That's what the hubby says and it's kept him on track all these years (even though he doesn't do anything slow at all).
I had my usual doc visit + chemo on Valentine's Day, with my oncologist running so late that I only got a 7- minute visit before being dragged off to infusion before closing time. This was also my latest CT scan review.
He said he was "concerned---not apprehensive and not fearful, but concerned". Something about my body being made up kind of weird, not quite right, but he can't figure it out. I started the study (clinical trial) on Thanksgiving, and patience isn't his strong point---things are receding, but for my age and health, we should be seeing larger results, faster. He thinks I'm receiving the placebo instead of the study drug, due to my lack of side effects. He's ancy and will unblind the study the minute anything starts happening. But we have to squeeze every drop out of this treatment right now. That was his 7-minute assessment.
Ok.
During the infusion, the clinical trial nurse came over and gave me another perspective. She explained that the large tumor (lung) had decreased by .4 cm and the bone lesions were more sclerotic (healing, scar tissue). The way the radiology report was written indicated a greater number, which prompted her to call. The radiologist said there were no new lesions, but that more of the lesions were sclerotic.
That said, she remarked that statistically I was doing far and away much better than any expectations (especially if I was receiving the placebo rather than the study drug), and the key seemed to be having fun.
So, I'm supposed to have more fun...hang out with friends, laugh, go to museums and concerts, get massages, sleep in, and not worry about the thousand and one things I worry about, like work, money, my aging parents. I'm thankful for every bit of fun I've managed since my diagnosis, but it's definitely on borrowed time.
I am relieved, buoyed by yet another "stable" scan. I'm trying to be more diligent about exercise and guided imagery, meditation and diet (I've gained 14 pounds in 2 months---that can't be normal). I have something like a rash on my scalp, so I'm not entirely convinced I've been taking sugar pills since Thanksgiving. But even so, I want to believe in the mind's power to heal. It's the final frontier, and I've read many accounts of incurable patients going into remission. It doesn't happen overnight, but if my tumor shrank by .4 cm/6 weeks, I may be well in a year and a half. I'll take even more modest progress, if it means I'll live that much longer...heck, I want to grow old!
Of course it's not that simple, but simple goals are best: shrinkage of main tumor and good quality of life. I would be content with success in those two areas. To that end, I've been encouraged to join a gym and push my exercise limits (the physical therapist says it'll take care of the pain/insomnia/weight gain issues). Now if I could just address the thinning hair (ironic that I, previously of the big-hair contingent, should say that) and the vanity issues, which I can't believe are plaguing me at this juncture. It's a media disease, I'm certain.
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I received jewelry for Valentine's Day, for the first time ever. Even though it's a "Hallmark Holiday", it's nice to exchange vows of love in a formal way. In years past we paid it no mind, and Mike absolutely loathes cards, so we don't use that gesture. We are exactly opposite---I'm relatively unmaterialistic and love a written sentiment, and he likes stuff---Swedish fish and good candy, small expensive gadgets, large expensive boats, expensive hobbies, expensive...Hmm. Well, he might have to "settle" for his wife living longer for some holidays to come ;)
It's evening and I just woke up from a nap. The air is redolent of apple turnovers and freshly cut grass. My household is full of activity. Except for me. I'm sitting around like a lump of clay, taking turns gazing at a digital thermometer and the amazing flowers in my living room.
I couldn't go to my last big chemo treatment today. My white blood cell count was woefully low. The required baseline is at least 1400---mine is off the charts at 300. I didn't have a fever when the chemo nurse called to cancel, but lo and behold, an hour after walking on the beach with mom and hubby, my temperature shot to 100.6. It dropped to 100.3 later, just hovering below where I needed to either call the oncology nurse or haul my butt into emergency. Amazing what a couple of tenths can do. I'm in the blood count Olympics, trying to make the cut.
Low blood counts that don't bounce back generally indicates significant toxicity (from chemo). There's nothing I can do but wait it out, practice good handwashing, and stay away from crowds. I can't even get a flu shot---my body can't handle it. So I started reading this book:
