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From time to time I will update my current experiences with cancer diagnoses No. 9 and No. 10 in eleven years. I am currently getting radiation treatment for six lesions/swellings. Here are my first musings about it all.
16 June 2012, C. E.
I am about to go into a period of radio silence.
On Friday I started radiation to treat cancer diagnoses No. 9 and No. 10 in 11 years which means I am in my 12th year of cancer survival. This treatment is perhaps to be followed by eight cycles of chemotherapy lasting about eight months. I have considered – and am considering – doing nothing. I am not sure that trading off a potentially poor quality of life for an extra six or twelve months or two years of possible survival before this rodeo starts again is really worth it.
These new diagnoses are totally out of the blue. Totally out of the blue. I had every reason to expect the biopsies to rule cancer out, not in. I have experienced really bad side effects from the treatments during the last decade or so, including chronic peripheral neuropathy now, but the doctors think I will “tolerate” this new chemo well. “Except for the cancer” I seem to be “healthier now” which might help with toleration. However the list of potential side effects is alarming. (It recalls the rushed, harried, fast, breathless reading of potential side effects on TV commercials for Big Pharma.)
This, of course, is an existential question of the type we get from Sartre. The cancer is incurable, persistent, recurrent, metastatic, malignant, follicular, Non-Hodgkin Lymphoma in what are called “extra-nodal” areas including the skin although there is one enlarged lymph node on my neck. The radiation might get it all and perhaps I could last a while without a complicated chemotherapy year. But the pattern of recurrence is sobering. For a time, the chemo could deliver another semi-knockout blow to consolidate the “gains” from radiation and because of that I am actively considering the chemo. But spending the next ten months in misery is not my idea of a good time.
Interestingly, the lymphoma has apparently “evolved” to make the old chemotherapy useless. (I didn’t think we could “see” evolution happen in real time.) The cancer cells have a little hook- on that the chemo grabs on to and then blows up the cell. Apparently the cancer lymphocytes have evolved to the point they still have other little hooks, but the one to which the chemo is designed to attach to has evolved away. Amazing, isn’t it, that cancer cells evolve and survive, but Homo sapiens sapiens has a big “Head’s Up” warning about Climate Change and Global Warming and the species seems indifferent to survival. That evolutionary change on the cancer cells seems to make as many as three other chemotherapies moot.
This new chemotherapy, Treanda, sounds good but I have spent so many immiserated years over the past 12 dealing with horrific side effects all over the map and I am not eager to possibly revisit any of those in the next 6/8/10 months. Plus, my blood counts will blast through the floor during each cycle and I will be heavily susceptible to infection. They have a shot for that to help grow new blood cells in the bone marrow, but that causes bone pain. (Don’t ask.) I guess the only thing worse would be to get a bone marrow transplant and be a “bubble boy” for a few months but I have little enthusiasm for that. (I narrowly escaped that at M. D. Anderson in Houston several years ago.)
Hell, maybe I’ll do the chemo and not have very many if any side effects. Who knows?
I would like to Declare my Independence from the Medical/Healthcare/Insurance/Pharmaceutical Industrial Cartel Capitalist Corporate Complex. In addition, I do not think that The United States is sliding or slouching toward a Stalinist Soviet Fascist Corporate State. Rather, I think we are already there. It is just “kinder and gentler” than Syria, North Korea, Zimbabwe or Iran.
Encouraging and inspiring it is though, to see so many informational and oppositional infographic “poster” postings on Facebook.
Still, I am feisty, rebellious and defiant enough to NOT want to call it a day…at least not yet. Please don’t tell me I am brave, courageous and bold because I am not. I am scared shitless. But serene. Meanwhile I will amuse myself by using a Sharpie to keep all the black dot “radiation circles” nice and dark.
Thom Prentice, Ph.D.
P. S. I will probably continue my blog at democracyweb.com but will not be Facebooking much; however, I will look at the infographic “posters” from time to time. Updates periodically. Email is ok: firstname.lastname@example.org
Update 19 June 2012
On reflection, I realized that I had stopped listening to my music a decade ago when cancers first appeared and the treatments were horrific. I kept not listening to music for most of the decade and I wonder how that contributed to my immiseration and hopeless, helpless feelings. I have found myself in the same exact spot this time around – even in the car — but I have now reflected and realized it. (Are we doomed to repeat previous cycles and make the same mistakes automatically again and again if we don’t reflect?) I have put music on the past two days and my mood is still somber – and even pissed — but lifting. Of course, that doesn’t have anything to do with whether the cancer goes away or comes back. But it does refresh. Even though I am increasingly fatigued and tired and the radiation targets are starting to sting. Right now I am listening to Tom Morello’s The Nightwatchman/World Wide Rebel Songs. Maybe Adam Lambert’s new album next. Cheers.
Update 20 June 2012 (Solstice)
I am approaching the mid-way point in this initial radiation treatment and it doesn’t seem that either the swellings are going down or that the lesions are “melting away”. I am very fatigued and tired and the neuropathy on my feet and palms is getting worse. I see the radiation oncologist Friday for a status check and then my regular oncologist Monday to examine options for the future. They offered a free massage today at the radiation clinic and I was amazed at how much it relieved the stress in my back, shoulders and shoulder blades. I guess I didn’t realize all that upper back pain was stress. A wonderful woman who has both kinds of breast cancer and a tumor in her brain case commutes from Shiner. Her husband drives her and her grandkids come with her. She brings fresh vegetable and eggs from her farm and the radiation center is kind of a “farmer’s market”. I bought some tomatoes and can hardly wait to taste one. Those grocery store tomatoes just don’t cut it.
Update 22 June 2012
I will never buy grocery store tomatoes again. Those farm-grown tomatoes demonstrated why tomatoes are designated a “fruit” and NOT a “vegetable”. I had forgotten how real tomatoes taste and that they are supposed to be intrinsically juicy. Besides the tomatoes at the grocery look too perfect, too fat, too red and they have zero taste like the tomatoes on burgers at fast food dumps. These tomatoes — whoa — I am eating them as snacks! We are using them in cooking! When I woke up last night to pee and get more ice for my water, I decided to eat a couple of the farm-grown tomatoes and oh, was that refreshing. I went right back to sleep.
The incurable follicular recurrent persistent metastatic mutated extra-nodal malignant non Hodgkin lymphoma lesions do not appear to be “melting” — at least not yet. Some additional radiation scheduled after seeing the radiation oncologist today. I will see my regular oncologist on Monday.
Despite my disgust for Obama and the Democrats, the “Obama Store” is nearby the radiation place in Austin so I stopped by anyway. I particularly like the rainbow flag-themed bumper stickers which say “Obama Evolved” with the two “Os” being the Obama circular American flag logos. Although I am still very unenthusiastic about Obama despite (because?) of having supported him enthusiastically in 2008 despite my cancer infirmities and remain exceptionally disappointed and disgusted, the “Obama Evolved” rainbow flag bumper sticker allows me to promote Obama, promote his ability to rethink things and change his mind (to actually think!), and promote Marriage Equality simultaneously without being an overt Obama-Biden supporter. Plus it is an encouragement to whomever sees the sticker to think instead of just react to things or kneejerkulate and to similarly “evolve” and become self-awakened and self-aware.
A shout-out to former State Rep. Glen Maxey, the first openly gay state representative elected in Texas history and the director of the Obama campaign in Texas, for designing the stickers.
24 June 2012
For the record, here are my ten cancer diagnoses in the past eleven years:
Diagnosed with the first of five cancers in 2000/2001, including the following: CANCER DIAGNOSES:
1. Cutaneous NH lymphoma 2000 Local topical spray chemo
2. Follicular NH Lymphoma 2001 Rituxan
3. Renal Cell Carcinoma (kidney cancer) 2001 Radical nephrectomy
4. Follicular NH Lymphoma (metastasized) 2002 CHOP-R
5. Large B cell NH Lymphoma (tongue) 2003 Radiation/Continue Rituxan
6. Small B Cell NH Lymphoma 2005 Rituxan monthly
7. Follicular Lymphoma metastasized to arm 2006 Rituxan at varying intervals
8. Follicular NH Lymphoma metastasized recurnt 2009 Rituxan back to monthly
9. Follicular NH Lymphoma persistent, recurrent metastasized to arm
2012 Radiation, Chemo Pending – Stage IV E
10. Follicular NH Lymphoma persistent , recurrent metastasized to arm
2012 Radiation, Chemo Pending – Stage IV E
24 June 2012
A weekend respite. Arms hurt. Neuropathy in feet is/are really bad. Just a few seconds in direct sunlight makes ‘em sizzle! I have some salve to put on and there is some fleeting relief. Listened to/watched Pet Shop Boys vids last night — The Hits. Listened to The Clash and Tom Morello this morning. Posted on democracyweb.com and Facebook. Edited two essays and posted them. Now nap time.
25 June 2012
Approaching mid-point on radiation. So far it burns but I don’t think I see any evidence of the swelling going down or the lesions “melting away”. But perhaps I am impatient. I am back to sleeping 10 or more hours a day, am tired and fatigued. I am bouncing through the Kubler-Ross stages of grief so my headspace is improving. The neuropathy is getting worse in both palms and especially feet, maybe because of the daily drive to Austin and standing for the radiation therapy. Still depressed but seem to be emerging from the desperate helpless/hopeless condition.
The people and patients at the Austin Cancer Centers radiation place on Martin Luther King are wonderful. That was and is about the only place I’ve been where one finds instant family.
25 June 2012
I have decided to go with the chemotherapy Treanda (bendamustine). It will be 6 – 8 months and the average survival rate is about 3.5 years afterwards, which statistically means some are ten years or more with no sign of recurrence as well as some who died within 6 – 12 months. I know nothing is guaranteed. Just last winter, I was hoping/expecting to live another 5, 10, maybe even 20 years. Maybe 5 is a good shot. I could still get to twenty.
I am concerned about all the potential side effects. My oncologist said there were meds to prevent nausea and projectile vomiting (don’t ask). I do not like projectile vomiting and I don’t like bone pain. He suggested I read the possible side effects for Tylenol which lists dozens of scary things but none of ‘em have occurred with me and he thinks I will “tolerate” it well, even though I haven’t — at least initially — tolerated ANY cehmo or radiation “well”.
He is more concerned about my pre-existing Chronic Fatigue Syndrome being made far worse. I’ll probably sleep more. I am fatigued and have no energy after the drive/radiation/drive back as it is and I do not relish re-entering chemo Hell although this is a new chemo called Treanda. Since I have had bad reactions to prior chemo, which apparently few others have experienced, he is going to monitor carefully and maybe extend the cycles or take a chemo break now and then if the side effects turn out to be worse than thought.
I haven’t worked out much since the surgeon cut those slabs of meat out of me six weeks ago or so for biopsies and I have gained several pounds. I intend to at least go to the physical rehab place and at least do treadmill, total gym and stationery bike kinds of things that don’t involve my hurting arms to lose that weight again. I am NOT going to get horribly obese again as I did for most of the decade between 2000 and 2011. I also plan to try to “live” during the chemotherapy as much I can rather than turn into a slug. The neuropathy in my palms and feet just gets worse and worse. My neuropathy doc ordered up some hydrocodone but I certainly don’t want to get back on that roller coaster again. The chemo will be administered for three days at the beginning of each cycle. I will finish sometime between 2012 December and 2013 March. Coldplay on the record player. Aloha.
UPDATE 3 July 2012
Radiation over. Not as bad as radiation to tumor under tongue in 2003. Lymphomas on the arms seem to be reducing somewhat. Chemo with Treanda starts next week. Since I already have Chronic Fatigue Syndrome, the doc thinks I will be hit hard by fatigue, tiredness, etc. I really do not want to go back to sleeping 18-20 hours a day and not working out, but we’ll see. Oh well. This should take 6 – 8 months which is a really long chemotherapy. The possible side effects look scary. But the doc said to look at the possible side effect of Tylenol. (I don’t know if I want to take Tylenol any more.) Onward! Life beckons! I would really prefer teaching future teachers at some university. The doc DID prescribe three anti-nausea/anti-vomiting/anti-projectile vomiting pills (I only had one for the really bad chemo before in the early 2000s) so that sort of worries me. Projectile vomiting. Been there, done that. Not pleasant. at all. But I continue to want to learn, read, write and think. And experience life. Like fresh, garden-grown tomatoes. And Ohio corn. And handsome young men. The best!
UPDATE 5 July
So the radiation is over but it causes fatigue and I am back to sleeping about 11 hours a day. The radiation wasn’t anywhere near as bad as the radiation directed at the tumor under my tongue eight or nine years ago, but most of the lesions don’t seem to be “resolving” or “melting” as they say at the radiation place. They all look better than they did but only two of ‘em seem to be actually “melting away”. (Why do I hear all these little screams of “I’m melting! I’m melting!”?).
The chemo starts next Tuesday and Wednesday. It is a new chemo called Treanda since my cancer has “evolved” and the other two chemos won’t work anymore because these damned cancer cells have eliminated the little protein “hook” that the Rituxan and Bexxar attaches to in order to blow ‘em up. I didn’t think we could actually “see” evolution in “real time” but there it is.
Maybe FDR wasn’t exactly correct about the “fear itself” thing. As for the chemo, there are “known knowns” and “known unknowns.” I don’t mean to quote Ronald Dumsfeld, the Fascist former Secretary of Defense, but I have been using those words since graduate school and he cribbed them from academia. (I don’t know of anyone in academia who would send boots on the ground to a “war of choice” in Iraq with Humvees that were NOT up-armored to withstand IEDs Improvised Explosive Devices (“bombs” is actually the correct word). But, I digress.
My oncologist thinks that the fatigue thing will hit me hard since I start off with CFS Chronic Fatigue Syndrome. He has also prescribed three – count ‘em – THREE meds for nausea and projectile vomiting. Either he is taking care that I don’t have THOSE side effects but three different pills seems kind of ominous. One of ‘em cost $97 USD even with my Part D Prescription Drug Medicare thing. As for projectile vomiting, been there, done that, been to that rodeo before, don’t like it at all. He thinks I will “tolerate” the Treanda to use the word du jour in oncology and reports that he has only had one patient who had a bad reaction to the chemo. So that is encouraging.
However, I might lose my hair, or I might not. Or be as hot as a furnace one minute and cold as a freezer the next. Or get shaking tremors. Or have sleep problems again. Or make me dizzy and more of a fall risk. Or make the neuropathy worse. Or keep me from physical therapy/working out. And on and on and on. Perhaps something in between all those binary oppositions. We’ll see.
So, there are very little “knowns” and a variety of” unknowns”. Hope for the best; plan for the worst. Hell, maybe the chemo will pass by silently in the night. Based on my prior multiple experiences with chemotherapies, I am not optimistic about it passing silently in the night, but I am hopeful. There is some reason to find it credible that I won’t have the horrific, catastrophic side effects of prior chemotherapies, so I am hanging my hat on that. We’ll see.
Respect and Peace,