Chemo Days 4 and 5

Dear blog,

Day 4 (or third day after treatment) was the worst for me. I had mouth pain develop on day 3 that made me dread even taking a drink of water. It got worse on day 4 and is still present now. I treated it with the ten pound box o' packets' "salt water rinse" and "absurdly frequent tooth brushing". I mean, these guys were talking 'after every meal'! Anywhat, the salt water, while disgusting, had some soothing effect after eating or drinking, but that didn't change the fact that it was so hard to start. The worst pain is in the first few bites or sips, when salivation is activated. I found that this is common in forums online. For some folks, the symptoms only lasted days or a few cycles. I really hope the same is true for me.

I managed to get out of the apartment only once yesterday, to go to an arranged study session. I was able to think clearly, realize why the math made sense, but it wore me out extremely fast. In about 45 minutes I was feeling very sick and didn't get much done after that. I took a long nap and then watched TV for the rest of the day, until reading time.

Today I feel less fatigued and nauseous, though I actually took an anti-nausea early in the morning today, which might have been a good move yesterday. I was able to get down some Arby's chicken sandwiches which I had a coupon for and do normal stuff without great difficulty. I still took a 2 hour nap after getting some fun mail. 4 pieces of mail from the insurance.
The Good News: They processed my claims and they're not denying them!
The Bad News: I have copays and they are no longer an ethereal, in-the-future thing. 16 separate claims with 'student balances' running from 10 to 1500 dollars. That's after more than 80% was paid on each claim. I didn't manage to do a total before I decided sleep was a better idea, and now I'm writing this.

I would like to say, I don't feel better. I feel less bad. Something about a cold and feeling better, you expect a total cessation of symptoms in the near future when you feel better. I expect the symptoms to get slightly less until they get seriously worse again, and so on, for six months. Then, I will feel better.

5 down, 79 to go,
Ian Hogan.

Day 3 of Chemo

Dear blog,

Another day rolls by and the nausea remains tolerable, but. I need to be eating more and I am, in fact, eating less. The morning is easiest, but as the day goes, when I would usually be getting in the bigger meals, the nausea is actually getting worse. I'm down 3 pounds in as many days.

So I'm taking some advice on getting food down from the ten pound box o' booklets they gave us on the first day. I got some lactose free ice-cream and Fortify Plus, kroger brand "ton o' calories in a bottle". 350 calories to the fortify plus bottle, 13g protein and a vitamin pill's worth of ground up nutrients. My thinking is that I will eat as much solid food as I can, then fill in the remaining calories with this junk to keep from dropping weight so fast.

I slept for 11 hours last night and took a 1 hour nap this afternoon. I swam in the morning, but not particularly far. Hopefully day 3 is the worst day, because I feel pretty lousy at this point.

Rolling along,
Ian Hogan.

Vlog Zwei

Dear blog,


-Ian Hogan

Blog With A Vee

Dear blog,

Vlog

Addendum

Sincerely,
Ian Hogan.

Absolutely Maybe

Dear blog,

I met with the O'bleness oncologist, Dr. Sarwar, today (the close one). He had received none of the staging information from Dr. Jain (the far one) which was supposed to be ready 'late last week'. But, regardless of all that information, the treatment is the same. ABVD, 6 months.

That's two months of warm up, two months sustained heat and two months cool down, for my fit readers. Some absolute maybes there. It may work. I will absolutely be able to tell if it is working. Around the time hair starts dropping out lymph nodes which I can feel are supposed to reduce in size. If that's not what happens, we absolutely know what kind of even more caustic drugs they will drip into me then. I'll let that go until we see how things are progressing in a few weeks.

I will certainly get a port. When my good insurance kicks in. That's 4-6 weeks from 1-2 weeks ago. Y'all are smart, you can figure that out.

I start Monday, 8:30 for five hours. My guess is about an hour for each of the A,B,V and D drugs they need to drip. Y'all have google. Go nuts. Poison is set for a biweekly schedule thereafter. I didn't ask if six months is generally 24 or 26 weeks. I guess I'll find out around Christmas.

Cordially,
Ian Hogan.

P.S. I got a call shortly after posting. There is no cancer in my bone marrow. Stage 3B.

Beyond Good and Evil

Dear blog,

This is not about updates. This is about emotional hippy dippy. Some folks have related concern.

There are some things in my worldview that need to be considered before one may understand how my emotional hippy dippy works with regards to cancer. I present a quote from a film, My Dinner with André:

WALLY: Yeah, but I mean, I would never give up my electric blanket, André. I mean, because New York is cold in the winter, I mean, our apartment is cold. It's a difficult environment! I mean, our lives are tough enough as it is, I'm not looking for ways to get rid of the few things that provide relief and comfort, I mean, on the contrary! I'm looking for more comfort, because the world is very abrasive, I mean, I'm trying to protect myself, because really there are these abrasive beatings to be avoided everywhere you look.

End quote. I recommend reading the entire transcript or watching the film for those who are not familiar. Here is another quote:

And the ocean itself turns out to be one enormous engine of decay. Seawater corrodes vessels with amazing speed-rusts them, exfoliates paint, strips varnish, dulls shine, coats ships' hulls with barnacles and kelp and a vague and ubiquitous nautical snot that seems like death incarnate.

End quote. That was from David Foster Wallace, the essay which title I used for the previous post. The astute reader may note a theme through the two quotes. This theme runs through my view of the world and how I deal with it.

The world is a cruel, cold, 'abrasive' 'engine of decay' if you will. This is the functional aspect of the world, anyway. You all should know that the world is also a glorious morass of hilarity and gorgeous landscape; taradiddles and forays and adventure; love &c. But that's not a functional view. Functionally, the world, with no particular consistent speed, annihilates absolutely everything. Set something down and sooner or later it will be gone. Animals will have sapped all of the nutrients, plants will have upended it with their roots and cracked it into many parts and solar radiation will chip at its chemical bonds until rain and wind and meteors ultimately render it to cosmic dust.

The world is also in no shape or form fair. I have had some great luck in my life. For instance, I was not born into an impoverished and disease ridden town with a life expectancy in the twenties. I was not consumed by fevers or pirates as a youth. Other such things all included. I have also been ejected from a program as a result of politics. I have been poorly advised before I knew to question the advice of advisers. I have been lied to to prevent me from getting jobs. I have had my car acquire more repair costs than its value at my poorest time at only 100k miles.

How did I deal with these things? The same way that one must, in my view, deal with the perpetual death machine that is the universe. By moving, thoughtfully, rapidly, and without rest. When an army is outmatched, its only option is to move, at all times, thoughtfully, rapidly. It must outmaneuver and be absolutely relentless to have even the barest chance. When I was ejected for unfair reasons without recourse, on a Friday, by Monday I was 100 miles away, signing up for a temporary position and contacting people for a room to rent in that area. It was the closest work, the most guaranteed work. I thought about it and I hustled on what I determined to be an effective plan. If I had waited a week to get my bearings, I would have missed that opportunity.

Cancer is just one of life's neatest tricks for me. It may be on a greater scale than ice followed by snow that is nigh impossible to chip from a walk, but it's the same style. The carelessness of the universe at the inconvenience of the human, best fought by well reasoned and relentless attack. It is this same mentality, I wish to add, which is very necessary to get by in a graduate program. Even with passion, if there is no ability to work without rest for hours, days, weeks, months, years, then failure is guaranteed.

This year I have studied. I have expanded and condensed. I derived, integrated, extrapolated and inferred. I supposed and concluded. I contradicted and implied, computed, researched and proved. I revised and edited and inquired. I reviewed, memorized, copied and regurgitated. I can prove the statement of any theorem in An Introduction to Analysis by Kirkwood. I can use a strange intuition to tackle any exercise in Algebra by Gallien. I can search JSTOR for an Arhangelskii essay which hints at the answer to a topology problem, just to know what I'm trying to prove. I have spent 60 hours on a single problem. I never solved it. Life isn't fair.

For three years previous to graduate school I lost >100 pounds. I ran, walked, biked, swam, lifted, stretched, calisthenicized, yogaed, climbed, clamboured, pilatesed, fought and wrangled, all the time for years to accomplish the goal. I have been fighting the natural tendency towards decay for a while now and I'm damn good at it. So if I don't seem too put out about the cancer thing, that's why.

Wanna wrestle? We can wrestle.
Ian Hogan.

A Supposedly Fun Thing I'll Never Do Again

Dear blog,

The title is a rip-off from David Foster Wallace, an exposé on Cruises. It's not the best choice. Cancer isn't supposedly fun. However, I was reminded of the title by today's oncology experience.

I got a bone marrow biopsy today. Location: pelvis; right, rear entry. They numbed the skin and deep tissue with lidocaine, but there is no way to numb a bone. The doctor's description was that there would be pulling that would feel like pain for a minute that is not actually pain. A supposedly painless procedure. It's pain. Don't let them snow you. It felt like he was tapping a big part of my pelvis with a chisel. It was, however, a minute, and not more.

Bone marrow biopsy, while conscious, is on the list of things I never want to do again. It's a short list, getting longer with the new experiences I'm coming into with the cancer thing.

(1) I never want to do something I did, that hurt, and don't feel like sharing right now. It was a long time ago.

(2) I never want to be significantly overweight again. Ever. I'd become a drug addict before I ate to excess.

(3) I never want a doctor to stick 5 needles in my neck while conscious again. That was 1 lidocaine, 2 fine needle aspiration biopsy and 2 fine needle for flow test. The fact that none of them were diagnostic doesn't really add great positivity to my view here.

(3 1/2) (Cheers to Tychonov, I literally thought of this after writing (4)) I never want to get a bill that should be sent to insurance, call billing, call insurance, call billing, be told it's ok, get a second notice on the bill two weeks later and call billing, again. Tough luck on that, It'll probably be next month at the latest for that funzy game.

(4) I never want a bone marrow biopsy while conscious again. They said I wouldn't need one in conjunction with this cancer again. However, I know I'm at greater risk of getting this and other cancers later in life as a result of the ravages of treatment. I will probably ask to be put under if they start talking about needles in bones again.

The CT scan I got last Thursday is back. My spleen is enlarged and suspicious. The largest diameter of lymph nodes is 5.8 cm. Over 10 is what they call, if I'm not recalling incorrectly, "clumpy", and of different concern. So none of that. No nodes appeared in the pelvic scan. Some nodes in the chest were discovered, not surprising, and in the abdomen, also not very surprising. The easiest blood test in the world also came back; sedimentation rate. My rate is 97%. Bad is over 50%, some say 30%. This is not surprising given my fevers and night sweats-> indications of systemic involvement. This information taken into account, I am at least stage:
3B. If the marrow is infected (affected, I dunno), it'll be 4B, the latest and greatest.

I got straight A's though. If I pull that off on chemo this fall, I go to whatever PhD program I want. At least, I think I should be able to. I might get a port put in. That's a large vein temporary access port. That needs to be discussed more.

That's all for now. Bye bye,
Ian Hogan.