No Interim PET Scan, High Cost of Living, Conspiracy Theories Can go to Hell

Ooops, it's been awhile since I posted anything. Mainly because there hasn't been much going on. I'll make it a long one.

Last Treatment in sight:
On Wednesday Jan 30th 2013 I will have my next to last ABVD Treatment, yay!  My nurse at my 6th treatment asked me:
Nurse: Are you tired of all of this yet?  You were pretty gun-ho about treatment at the beginning.
Me:  Well, I am getting pretty sick of coming here.... uh, nothing personal.

I am still pretty gun-ho about treatment, tackling cancer and what not- blah blah.  However now- I'm almost done.  My last treatment will be 8 of 8 the last half of my 4th cycle on Feb 14th 2013 (I think Wendy and I will have a pretty quiet Valentines day).

How am I doing otherwise?  Pretty good.  My 5th treatment slowed me down a bit, but my 6th treatment went pretty well.  The usual 4 days of slow sleepiness  2-4 days of getting better, then 7 days of immediate recover and feeling pretty normal.

No PET Scan For You:
Normally most people at my hospital would get a interim PET scan after a 3rd cycle of whatever chemotherapy drug they're on, to see the progress of treatment.  However:  Not for me.  My Doctor is on vacation, so he wasn't present for my previous treatment session (I met with his head nurse instead), and my next one this upcoming Wednesday is on Wednesday instead of Thursday because I'll be seeing one of his Oncology colleges. I'll see my regular doctor on my last treatment.  BUT: No interim PET scan for me because I will only have 4 cycles, and everyone gets a PET scan when they're done with treatment any way.  So having 2 PET scans in 3 weeks makes no sense, and the actual cost of PET scan in about $9,000 USD! Again:  glad I have insurance... more on costs later.

Part of me is a bit annoyed because I want to see the results of treatment inside my chest, the swollen lymph nodes on my neck disappeared weeks ago- and to quote my nurse "well, if it's happening in one part of your body, it's a pretty safe bet that it's happening elsewhere."  The other part of me is fine with it- as preparing for a PET scan SUCKS, takes forever, and I'd rather not drink the radioactive "berry" milkshake if I don't have to. SO: I won't have PET scan results until about around the end of February 2013.

Cancer is Damn Expensive:
As I've stated in the past, no universal health care in a place like the United States is STUPID, considering the amount we spend on non-constructive things.

The actual cost of one chemotherapy treatment, what my hospital bills the insurance company not what I pay- which is a tiny-tiny fraction of actual costs, is about $33,000 USD EACH.  I calculated the 5 year actual cost of my treatment from start to finish (I have to have routine PET scans for the next 5 years, and if I'm clear during that I'm basically cured), and total is about  $600,000 USD (give or take, probably give, about $100K).

As I've said before, had I not had excellent insurance when all of this came up- it would have gone unchecked until it was too late.  Had it came up when I had really crappy insurance- I'd be financially screwed.

One of the saddest things I've seen is actually not the Chemotherapy treatment rooms and seeing other patients- it's on the week opposite my treatment, when I come into the lab at the hospital for a routine blood draw.  Why?  Because I have to walk by the financial counseling office.  There are ALWAYS 3-7 people in the waiting area.  These are people that basically have to either bankrupt their lives for their lives with a massive loan they'll never be able to pay off, or just simply not be able to afford their health care AKA not afford to live well or at all.  America is (should be?) better than that- but people are too selfish to give a damn.

As I've said many times before: I'm very lucky. 

The Worst Part of Cancer is Other People/Conspiracy Theories Can Go to Hell:
Mostly it's "internet people."  Meaning: "people who would never say this shit to your face, but will on the internet" which is always coupled with "people who don't know what the hell they're talking about."

No: "Big Pharma" is not keeping the "cure to cancer" secret in order to make money.  No: Eating a spoonful of cumin will not keep you from getting cancer or stop your cancer  (and it's not cumin, but racumin an ingredient of turmeric, and there's research going into it- but that doesn't mean "screw chemo where's the spoonfuls of cumin?"). There is no one all magical "cancer cure vaccine."  If you believe these things: you're a fool.  Stop getting all of your medical news and information from Alternet or mass forwarded anonymous emails and reading medical news headlines for 5 seconds.  You sit at a literal Google Machine- use it and stop being an asshole.  I didn't suffer fools before I had cancer, and I sure as hell don't now.

Cancer is a collection of a very broad group of a few thousand largely unrelated diseases all involving unregulated cellular growth; a disease of the chromosomes. It's NOT a virus, and all cancer is NOT the same.  Hell, even within the same type of cancer, having a different stage of it can make it completely different, I won't even get into mutations etc.  That's why there's no "cure for cancer" because that's just NOT the way it works.  Treatment is based on protocols, and the patients go through the steps with their doctors watching carefully for the need to adjust treatment, to hopefully eradicate the cancer cells. Cancer research is about improving the drugs and protocols to get a higher success rate for that particular form of cancer- THAT is where money goes.  People are just unable to wrap their minds around what's actually needed.

If that was over your head, here is a cartoon version.  Luckily my particular cancer is one of the most easily and successfully treated/curable cancers, with a long history of documentation.

My day job (which I'm off of until I'm better) is at a State University medical research institution (that is part of NIH). I do safety training there- I make sure everyone is safe and what not to work in the lab and to make people go to endless classes on safety- so I'm not a researcher, but I'm part of the cog that makes medical advancement go 'round.  I'm fairly certain we don't have PI's  taking all of that "big pharma money" and stowing it away in Cayman Island accounts while driving Ferrari's and lighting cigars with $100 bills.  They're scientists, not CEO's on Wall Street.

So: rather than buying some arm band, or a cancer awareness-colored spatula, you just send that money to where it's needed, to the people doing the work.  I have nothing against awareness marathons or arm-bands... but if you want to help- just give the funds instead of showing people "you know about it" or volunteer. (see how I just used "the Google" there?).  Or my particular one I like to champion, but honestly any of the ones I've listed are fantastic.

Oh, and Cat:

Chemo 5 of 8 Done + Side Effects Again

I finished the first half of my 3rd cycle of 4 ABVD treatments this past Thursday 01/0302012.

I have a blood test every week, and my CBC's have always been good, and my weight hasn't changed at all during treatment. With the last meeting with my doctor: "your blood counts are sky high!"  Which is good, if my blood counts are low they have to modify treatment, if it's too low, then treatment has to be postponed, which isn't good. It also means I won't be feeling too lousy in general.

In general though, I've been extremely lucky with side effects, as everyone reacts differently to the same drugs, I've dodged the major afflictions, mine are:

Fatigue: which is the worst of the bunch, and lasts about 4 days starting a day and a half after treatment, and needs about 3 days to slowly get better.  I'm not used to being in so much and sleeping this much, it's a little off putting, but the time passes quickly and it's easy to remedy: sleep.

Minor nausea:  feel full easily, eat smaller meals, more often takes care of it. Passes with the fatigue. I was prescribed 3 heavy anti nausea meds, with 3 refills of each. I have hardly used 2 of them, and the last one is more for sleep, and it's about 1/4, because:

Insomnia:  Yeah, fatigue AND insomnia. There isn't too much over lap though. On my good week is usually when it happens. Being up at 4 am, and walking up at noon hasn't happened since my college days (and was a bit more fun).

Acid reflux:  this is the new side effect, I've never really had this before in general. Doesn't happen very often, and usually when I'm asleep. Easy to remedy: don't eat anything to greasy or spicy a few hours before bed. Tums is also nice.

Jaw pain: not as bad now as my very first treatment. Feels like I've been gnawing on wood all day.

Hair loss:  "meh" sums that up, in the grand scheme of it all, that's pretty minor. The only hair I've lost is my head hair and facial hair. Eye brows and eye lashes aren't effected. I've lost about 90% ish of my hair. Should start growing back some time during my month of radiation.

Swollen lymph nodes gone: though technically not a side effect, but a result, it's good to know all of my swollen glands in my neck are all gone. The common type of Hodgkin's I have leaves a bit of scar tissue where the swollen gland was, but nothing like the hard round glad it was before treatment.

I haven't had any signs of chemo brain yet as it's called, I decided I'd try to avert it (if that's even possible) by keeping my mind pretty occupied with reading, films, mind games etc to keep my mind sharp if possible. I do have a bit of trouble keeping focused the couple of days after treatment, then fades. I chalk it up to the anti-anxiety meds they give me plus the steroids.

In a couple of weeks I'll finally get my next PET scan to see the progress. Hopefully it'll be good news, which I think it will be given my lack of swollen nodes.