New day, new look.

Definitely on the mend. I think Thursday was the low point in my blood cell counts. This round felt a little worse than the last, possibly due to the increased Cisplatin dose that I got last Monday (from 140 to 170 ml).

The nausea has been worse, overall. Today I was actually woken up by nausea (not recommended, if you can avoid it) but have felt otherwise much more like myself. The mental fog I was in yesterday --seeming dangerously close to black-out level if I'd sit up too quickly -- is mostly gone today. I felt queasy and motion sick just from nodding in agreement yesterday.

The key, as everyone keeps telling me, is in the eating. It keeps the nausea away and keeps the energy up. But when nothing sounds good, and in fact every food you can think of seems a little stomach-turning, it's a real conscious effort to eat. I've always been blessed/cursed with a decent appetite, so this part of it is very new and strange to me.

JL shaved my head last night. I was stressed about the transition and she admitted that it was helpful for her to be a part of it as well. It was and is shocking to see myself in the mirror still.

The process of shaving ones head actually takes awhile, involving at least 3 steps. First a clipper is used to get down to a military buzz cut length, but those only get it so short. From there, shaving cream and a sharp facial razor got it down to almost nothing, but several passes were needed. Finally my new electric razor finished the job. It was JL's first head shaving, and she did great. I still have the same number of ears that I started with, and no nicks or cuts at all.

I've been sleeping oddly, which is about the only way that I can find to describe it. I'll wake up in the middle of the night to use the restroom, certain that I've been asleep for 6 hours or more, only to find that it's only been 50 minutes or so. I wake up 5 or 6 times during the night but sleep very deeply when I do sleep. This without sleep aids. Though I might get back on them tonight.

Hopeful that the recovery will continue nicely, and that the next chemo treatment (scheduled for Monday) is easier.

The New Do

Thursday

Boring title, but it's the best I can do.

Feeling very lethargic, still nauseous, dizzy and weak. Went to the acupuncturist today and that wiped me out enough that I needed another nap. Blood cell counts likely lowest of the cycle today.

Hair loss undeniable now, psyching myself up for shaving it all off tonight.

No appetite at all, but I know from experience that I need to eat something or the nausea will get worse. Just had some simple quinoa with chicken and peas a few minutes ago and the nausea is coming back down.

Another new symptom today: my tongue feels weird. Too big, perhaps. It tastes funny, and feels slightly numb, as do my lips. The feeling reminds me of something I've experienced before but not sure where. Some drug reaction, most likely. Or hypoxia? They talked about that during my pilot training... or low cell counts? No idea.

Sense of smell magnifying as well. Along those lines, I find that the more organic something is, the less it bothers me. I've given over my cologne for essential oils, and have taken to burning just white sage as incense.

Kaia (my dog) is very patient as always and seems a little concerned. Luckily, there is little in life she enjoys more than a nap, so she's very happy when I decide to take one myself.

Will post shaven-headed pix when I do the deed.

Brief update

Not much new to report, may be getting the hang of this chemo thing already: get chemo, feel crappy the next day, slightly less crappy the day after that, etc. My blood cell counts will be at their lowest in the cycle tomorrow, apparently, but by then the nausea should be wearing off. It's all manageable, just basically annoying. Hanging in there and taking good care of myself.

Keep On Keepin' On

Hanging in there today. Have been eating. Stuff is going down okay but still no appetite at all. It's a conscious process of reminding myself to do it. Speaking of which, I have a turkey sandwich on wheat from Seward Coop that is staring me down at the moment.

I had acupuncture this morning and that is a great non-medical way to fight the nausea. It works as well if not better than the prescription antiemetics, with no tiredness or "hangover" later. Truly, the acu is powerful medicine.

This Ain't No Mudd Club / Or C.B.G.B. / I Ain't Got Time For that Now

And just like that it all starts again. Back to the nausea, sense of taste all whacked. The Chemo is working.

I just took a two hour nap, trying to beat the window before the I.V. Steroid kinks in and I *can't* sleep tonight. When I laid down a fresh chicken burrito from Chipotle or Burrito Loco with beans and cheese and sour cream was sounding awesome.

That was then, this is now. With the first waves of nausea starting up, I know that the best thing is to get some food in me or it will only get worse. Nothing sounded good, so after staring at cupboards and fridge for awhile I selected a plain organic brown-rice ricecake. For the record, this really didn't sound good either, and they're bland at the best of times. But the blandness was what I was after. It tasted like cardboard, or maybe more like moldy cardboard. One of those off-taste moments like swigging milk right after drinking lemonade.

My stomach nearly rejected the first bite, and honestly it tasted terrible. Bland would have been preferable. I just had one from the same pack with peanut butter on it a couple of days ago and it actually tasted good and slightly sweet. Today, I ate 3/4 of the ricecake and am still getting up the courage to eat the last bite. At least it settled the stomach a bit.

The catch 22 of all of this is the lack of hunger and the odd sense of taste and smell leading to lack of eating, which leads to nausea, which makes me *not* want to eat, which makes the nausea worse. It's a weight loss plan that is ironically doctor-caused yet not doctor approved. I lost 10 pounds in the first week of chemo.

I don't recommend the process or the other side effects, but not eating at all sure makes the pounds fly right off.

This Ain't no Fooling Around

Back from Chemo. It went well, no nausea at all at the moment, really feeling just fine except I'd like to take a nap, which I will shortly. The steroid will kick in tonight and make it hard to sleep, so I need to take advantage of it while I can.

Oh, and out if curiosity I asked the nurse for the cost for the Chemo: about $5,000 per round (thats for 2 days of treatments, bloodwork, chemo drugs, doctor and nurse time, etc) or between $15,000 ad $30,000 for the whole thing (3 to 6 rounds). When I go to MCHA for health insurance I will hit my yearly out of pocket max within my first visit of the round. That first visit will hurt (the $3,000 that I will personally pay) but all health care will be 100% covered afterward for the rest of the year. Health insurance: it's a necessary evil. My guess is that this cancer stuff will cost my insurance company $70k-100k just this year alone. Ouch. I'd better run for governor or something, since Minnesota is doing a lot for me. I feel like giving back.

This Ain't No Disco

Had labs drawn (everything looks great) and met with the oncology Doc, Dr. Grampa. He said 3 to 4 rounds of chemo, which means about 6 to 9 weeks more of this. Surgery to follow about 30 days after last treatment. This isn't new information, exactly: just a clarification. I was told originally that it could be up to 6 rounds.

Chemo finally underway at about 10:45 am.

They had some troubles getting the I.V. In, it took 2 nurses and 3 sticks. After the first unsucessful one, I get more and more jittery, so that makes their job harder as well.

Feeling dizzy and tired from the Emend pill and from the Palonosetron I.V. injection (more anti nausea). IV saline running now. Actual chemotherapy drugs yet to come.

This Ain't No Party

Up at 7am so that I can make it to the Pharmacy right at 8 to pick up my Emend, the anti-emetic (anti nausea) pill that I have to take 1 hour before the first day of chemo in each round, and then once a day for the next 2 days.

While showering, noticed the first of the hair loss. It's slight, but I've been keeping a close eye on it since I started chemo 3 weeks ago, and this was the first day of hair loss. Likely will shave head this week. Another reminder that this is some serious sh*t: I've been feeling so good recently that its easy to forget that I'm doing Chemo.

Speaking of which, off to chemo on a few minutes. This is the long treatment that will take 4 or 5 hours hooked up to an IV. My mom will be there as well. The treatment itself isn't all that bad, and they actually make the patients very comfortable while there, with flatscreen HD tvs, leather vibrating heated la-z-boys, juice on demand, etc. And so far everyone at the clinic has been extremely, hugely kind, and the nurses and docs are very knowledgeable, experienced, and genuinely caring. It's a certain kind of person that goes into Oncology, since one has to be aware that patients are very sick and may not get ever get better, but so far I'm feeling it's the cream of the crop. It doesn't have a sad hospice feel, which is what I would have expected. Instead, the nurses feel more like awesome flight attendants (of which there are none in the real world) if that makes any sense: good natured, even jovial, anticipating all of your needs, answering all of your questions, tailoring the experience to fit your situation and checking in on you constantly.

A Change for the Better

I'm looking into changing health plans from MinnesotaCare to MCHA.
Minnesota has essentially had nationalized healthcare for decades,
offering several plans at free or reduced rates. I know this costs
money to the state and the taxpayers: but what is a nation's wealth
for, anyhow, other than to enhance and prolong the lives of its
citizens, either directly or indirectly? But I digress.

MinnesotaCare, intended for people below the poverty line, has an
annual inpatient maximum of $10,000. I have used up all of mine with
my diverticulosis episode and the initial cancer biopsy, so I have
none left to cover the next big surgery an hospitalization (which will
likely be $40,000 or more). FYI, the chemo (since it is outpatient) is
still covered at 100%.

So, I have begun shopping for health insurance.

What you want in the health insurance world is to be continuously
covered, or to have a gap no longer than 62 days (why this fairly
random-sounding number, I have no idea). I *have* coverage currently,
through MinnesotaCare, so that's good. But almost any health plan has
the right to exclude me based on pre-existing conditions if they're
serious enough. Cancer qualifies.

So, again, Minnesota comes to the rescue. We offer something through
the Minnesota Comprehensive Health Association, or MCHA.

From the MCHA website:

- - - - -

"
MCHA was established in 1976 by the Minnesota Legislature to offer
policies of individual health insurance to Minnesota residents who
have been turned down for health insurance by the private market, due
to pre-existing health conditions. MCHA is sometimes referred to as
Minnesota's "high risk pool" for health insurance or health insurance
of last resort. Currently, about 30,000 Minnesota residents are
insured by MCHA throughout the State of Minnesota.
MCHA is a non-profit Minnesota corporation, organized under Chapter
317 of Minnesota law. MCHA is not a State agency. It is regulated by
the Minnesota Department of Commerce. An eleven-member board of
directors provides policy direction to MCHA. An executive staff
manages the administration of the risk pool. Since its first year of
operation in 1977, MCHA has contracted with an outside organization to
perform day-to-day operations of the plan.

MCHA IS NOT MINNESOTACARE!
Premiums charged to policyholders are generally higher than rates for
comparable policies in the marketplace By law, MCHA premiums must be
set between 101% - 125% of the weighted average for comparable policies.

WHO NEEDS MCHA INSURANCE?
Minnesotans who have been turned down for individual health insurance
in the private market due to pre-existing conditions.

Circumstances include:

• Individuals who exhaust COBRA benefits.
• Individuals working for employers who do not offer health insurance.
• Individuals who have exceeded lifetime maximum limits, or their
previous coverage.
• Former employees of bankrupt companies.
"

- - - - -

I haven't been turned down yet by other companies (such as Blue Cross,
Medica, Etc.) but I am assured by several sources including MCHA that
I *will* be.

The premiums are reasonable, in the self-insurance world. About $250 a
month. But there are many benefits. The first of which is that the
annual out of pocket maximum is $3,000. This is a bunch of money, but
doable, and I'm told by my doc that this cancer thing will cost $1
million by the time it is done. In the scheme of things, paying 3k per
year plus my monthly $250 (about 6k per year altogether) is peanuts
for 100% coverage. There is a $5 million lifetime cap on benefits, but
I think that is a very comfortable buffer.

The biggest news? MCHA is accepted at Mayo clinic. I have confirmed
this by phone with both Mayo and MCHA. This means that my surgery will
now be done by the #1 guy in the U.S. (and possibly also the best guy
on the planet) for my exact kind of cancer, at one of the world's
leading medical institutions. I feel very good about this.