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.

Rocky Mountain High

Back from CO, and had a nice break away from the worries, etc. of
normal daily life. I must be feeling nearly 100%, as we did a hike at
9,000 feet (though fairly level, its a high-mountain valley) that took
us past a ghost town and within a mile of the entrance to the Indian
Peaks National Wilderness area, which is a little like the Boundary
Waters in its primitiveness and ban on motorized vehicles. The last
time I was through there I was not doing chemo of course, but I felt
stronger this time. One of the advantages of having been back at the
gym for the past few months, though I have been slacking since chemo
began. I have a little more energy to spare, I guess.

I have been sleeping well, even without prescription sleep meds, and
experiencing no nausea at all. I still forget to eat unless prompted,
but have a healthy appetite when I do. I realize this is part of the
cycle and this will probably start all over again with tiredness and
(controllable) nausea when Chemo start up again next Monday, the 26th.

People have been asking so I want to reassure everyone that my
expenses and costs during chemo and surgery are covered, and I *do*
have health insurance, so please don't worry about me in that way.
Everyone's amazing emotional support that I've gotten throughout this
ongoing process remains very key to my (generally speaking) positive
attitude, and I appreciate it wholeheartedly.

I talked to the nurse at my Oncologists' office via phone while in CO
as well. They have had me on a slightly reduced dosage of Cisplatin
(what I think of as the more evil of the two drugs because of its side
effects) in order to avoid more hearing loss. I have some hearing loss
that I've had most of my life (when I was a child I had some ear
infections, PE tubes in my eardrums and even a burst eardrum) and I
have always had tinnitus (ringing in the ears). Cisplatin can *cause*
these things, so for a person who already has them it can increase the
symptoms dramatically. My oncologist originally agreed to put me on a
reduced dosage of Cisplatin, but is now recommending that we go back
to the full dosage in order to fight the cancer most aggressively. I'm
still considering, but I am leaning towards upping the dosage.

This entire process is a series of tradeoffs. I will not emerge from
this cancer process exactly the same as I went in. Chemo can have
lasting side effects, and there is a surgery planned at the end of it
what will leave me with a slightly smaller bladder capacity forever
and a big scar on my abdomen. Its a livable consequence, but there is
a the possibility that they will recommend an even more severe surgery
at the end of chemo if the outcomes are non-optimal. Again, its a
series of trade offs. I do not want the most invasive surgery (who
would?) and am doing everything I can to avoid this being the only
option. If I need to increase the Chemo -- and have a very real risk
of more hearing loss as well as some numbness in my fingers -- its
still a better option than what's behind door #2.

Yes, it sucks that I was dealt this hand. I have gone through a
microcosm of the 12-step grieving process virtually every day, from
anger to denial to bargaining to fear, etc. Even through I am the sort
of person that does an unhealthy amount of looking back, I have found
myself loking mostly forward throughout this process. We all have
things that we might change if we could wave a magic wand, but its
unhealthy to fixate on what could have been. I have a bumpy road ahead
of me, but I still have some choices that I can make. To mix metaphors
shamelessly, I *am* up shit creek, but I *do* have a paddle.

As my tattoo says: "That which does not kill us only makes us
stronger". A quote from Nietsche that I had translated into latin. I
designed it and and had it inscribed (along with the date of my
undergraduate college graduation, which took 21 years from start to
finish) on my upper arm. The saying remains as an inspiration to me
daily, and is perhaps even more relevant now than it was for my
graduation.

Leaving on a jet plane

I'm headed out to Colorado for the court thing, JL and RY are with me as well. Feeling much better today, slept well also. No chemo again until the 26th, so I should be feeling better progressively until then.

Updates may be spotty in the next week or so as I'll only have email access via my phone.

Aldo I just found out that my Angel Foundation grant application was approved! This covers up to $500 a month in expenses (pays bills directly, for you) for up to 24 months while undergoing Chemo. It's a great group and one of my favorite cancer related charities already: gets the money directly to people who need it, and even handles some of the hard stuff like paying bills. When I'm able again, I'll be donating to them.

YUM

Brown rice, organic peas, organic baked chicken, garlic, soy sauce. No oil, not fried at all. Don't worry, when I remember to eat, I'm doing a great job.

Good news

Some very positive news today: my PET/CT came back negative. No sign of metastases or cancer anywhere else! Combined with the bone scan, this means that they're as sure as they can be with modern technology that I have no other lurking tumors or cancer from head to toe. Personally I had a good feeling that it would come back this way, but I 'm really happy to have the confirmation.

Live to Eat, Eat to Live

This is a list that I got from a fellow cancer survivor that beat his
cancer into remission be relying almost completely on diet. Food is
powerful medicine. This is from his nutritionist, and is a great list.

It all sounds good to me (the good stuff) and the bad stuff sounds
very heavy and a little stomach-turning at the moment. Though I am
actually craving bacon and cheese right now, but that might be that I
need sodium. Or it could just be that bacon is tasty.

p.s. Homer Simpson would not last long with cancer, methinks.

- - - -

Aim for foods as high on the chart as possible.

Based on Nutrient Density = vit, min, protein, fiber + healthy fats
per 100k cal & glycemic index + how quickly that food raised blood
glucose & anti-cancer properties (i.e. ellagic acid in berries)

BEST

Oil from fish, flax, primrose, borage, hemp, MCT, PAM, olive, sesame,
lecithin

Green leafy, Broccoli, Cabbage, Peppers, Sprouts, Onions, Beets,
Tomato, Carrot, Asparagus, Cauliflower, Cod, Halibut, Salmon, Tuna,
Trout, Orange Roughy, Bass, Sole, Sardine, Haddock, Pumpkin, Yam,
Organic Liver, oranges, Apple, pear, Berries, Cantaloupe, Kiwi, Fig,
Cherries, Apricot, Red Grapefruit, Yogurt, Wheat Germ, Brewer Yeast,
Whole Grain, Barley, Oats, Flax, Millet, Amaranth, Buckwheat, Spelt
Wheat, Ezekial bread, soybean, Garbanzo, Kidney, Lentil, Navy bean,
Split Pea, Blackeyed, Pinto Beans, Black Beans, Bee Pollen, spurilina,
Garlic, Vinegar, Mustard, Salsa, Curry, Cinnamon, Ginger, Green Tea,
Cayenne, Stevia, Kelp

GOOD
Canola Oil, Coconut oil

Radish, Celery, Lima Bean, Zucchini, Squash, Lettuce, Avacado, Veg.
juice, Turkey, Chicken, Lamb, Veal, Pork, Wild game, Swordfish,
Watermelon, Grapes, Honeydew, Plum, Banana, Pineapple, Papaya, Pasta,
popcorn, Cottage cheese, Parmesan cheese, Low fat Milk & Cheese,
Soymilk, Walnut, Almond, Sunflower seed, Soy Sauce, Worcester,
Tabasco, Flax Dressing, Sage, Thyme, Black Tea

FAIR
Oil from soy, corn, safflower

Olives, Canned vegetables, Fried vegetables, White Potato, Lobster,
Clams, Beek, Duck, Shrimp, Catfish, Dried Fruit, Raisins, Dates,
Prunes, Canned fruit, Corn chips, Granola, Wheat crackers, Tortilla,
Grits, Peanuts, Peanut Butter, Regular Cheese, Regular Milk, Xylitol,
Italian Dressings, Red Wine, Carob, Chocolate

POOR
Commercial breakfast cereals, Bacon, Pizza, Smoked Ham, Prime Rib,
Gelatin, Desserts, Sweet Corn, White rice or, Wheat, Molasses, Butter,
White Wine, Beer, Mayonnaise, Celtic Salt, Coffee, Honey, Fructose

BAD
Pickles, Salami, Bologna, Sausage, Hot Dog, BBQ Ribs, Waffles,
Pancakes, Cake, Cookies, Ice Cream, Blue Cheese Dressing

WORST

Margarine, Aspartame, Syrup, MSG, Soda pop, Diet pop, Pastry, pie,
Doughnuts, Lard, Hydrogenated fat, Sugar, Hard Liquor

- - - - -

Chemo self-portrait

Self portrait from last week's chemo session #1, just now getting to
uploading it from the camera. Deceptively innocent looking bags of
highly-toxic chemicals. Mmmm: highly-toxic chemicals....

BTW it seemed strange to me to have such a very large mirror in a
chemo clinic bathroom. This is a time when people rarely feel their
best, let alone look their best. The full-body beveled mirror might
just be a reminder of, "hey, you look crappy today. Good job!"

RadioactiveMan, Part II

Yesterday was a good day. Today, not so much.

I attribute this good day yesterday largely to the acupuncture that I
received on Saturday. While I felt terrible on Saturday night, 24
hours after getting the treatment I felt nearly 100%. No nausea, good
energy, off all anti-emetics, prescription or otherwise. It was a
miracle recovery that cannot be due to chance alone. I was actually
feeling like I'd like to go to the gym on Sunday night until my mom
reminded me that I wasn't supposed to do any strenuous exercise for 24
hours before the PET/CT, which I had today, Monday.

The PET/CT is the test that will determine if there's cancer hiding
anywhere else in my body. I have never had a PET/CT before and its
similar to and MRI, similar to a PET scan, similar to an x-ray, except
not really like any of these things either. Its hugely expensive
(thanks be for health insurance) so consider yourself lucky if you've
never had one, since it usually means there's something seriously
wrong with you or the docs wouldn't order it and insurance wouldn't
approve it.

To prep for the CT I was given another radioactive shot (still no
super powers) through an IV line (I wasn't exactly sure why, all they
added was saline to the line, seems like they could have just given me
a shot), fed a fairly vile milky substance and told to sit completely
still in a room for an hour while the stuff settled. I wasn't supposed
to move or talk, for some reason that was not fully explained, This is
another kind of challenge: not a physically painful one, but a mental
one. With so much on my mind to sorry about, the commandment to sit
still for an hour with no ability to move or distract myself left my
brain to create a sense of dread and anxiety, spinning in unhealthy
circles and rehashing problems old and new.

Finally, the hour up, the grumpy techs came in and removed my IV line.

(People with phobias involving blood and needles should skip the next
paragraph altogether.)

I've seen a lot of blood, having worked in the blood-technology
industry in Colorado, and I'm not afraid of the sight of it. I donated
blood regularly, have been to numerous dialysis clinics and seen blood
splashing and coursing in many forms. I find it fascinating, actually.
I know what it should look like. When they removed the IV, the blood
that spilled on my arm looked more like cherry soda than ketchup, and
left a big purple blood blister underneath the skin. So that had/has
me worried about my blood cell counts. I think it would be very early
for them to drop this fast, but the last time I saw blood that thin
was when I brought my dog Woody to the vet in Colorado, and they told
me he an aggressive cancer, a low platelet count, and had 2 weeks at
the outside. So there's that going through my head as well. I hope it
was just random chance and it was a bit of saline in with the blood,
and the grumpy (and honestly not very good) techs made a big boo-boo
by pulling out out wrong. It sad to say, but I've had a lot of IVs in
my life. I can tell they weren't very good at puttiing it in or taking
it out.

So I sit for an hour, dwelling and stewing, and then go to the
machine. A big beige sewer pipe looking thing with a long bed that
slides into it. I'm not tremendously claustrophobic, but my MRI years
ago was pretty intense, stuffed into a 7 foot long tube that isn't
really wide enough for my shoulders while wearing a metal face mask
that touches my nose while a deafeningly loud machine thunks away for
about 45 minutes. Today was better, but still a little claustrophobic.
At least it was only about 4 feet long and open at both ends. I laid
down and again was instructed to lay completely still for another 20
minutes. I chose to close my eyes so that I wouldn't be stressed out
by seeing the tube surrounding me. I was allowed to breathe, but that
was it. The machine is very quiet, at least. More toxic brain time,
this time with no change in sound or sight.

Today I'm back to worrying, not sleeping well, and prepping various
things for sale on CraigsList.

Tuesday: Chemo #2.

Food and Related Miscellany

I'm doing better today, am off all anti-emetics and not feeling
nauseous. Last night was rough. Plenty of things to worry about all
day, and the gig was decent but it was very sparsely attended so we
got very little energy back from the audience. We treated it as a paid
rehearsal and RY and MO took advantage of the $25 bar tab we each got
in addition to our pay. I ordered some baked mac and cheese with baked
chicken and a dark irish bread on the side that went down surprisingly
easily and quickly, though sat like a lump of coal in my stomach for
the rest of the evening. I'm off the alky-hol completely, so I sipped
a weak ginger-lemon mixture from home all evening. Turning down free
alcohol=commitment.

Thanks all for the great input regarding what to eat, etc. I very much
appreciate it. I was writing this as a comment but it grew so long
that I decided to make it a post instead.

I have several things going on at the same time which complicate
matters a bit. I am trying to eat healthier, certainly. But I also
agree that to a certain extent, any food you can get in you and keep
it down is better than no food. But in addition to this cancer/chemo
stuff, I also have diverticulosis. This is where the intestine
develops tiny little pockets that can become plugged and inflamed
(gross, I know) and this landed me in the hospital about 4 months ago
when one of them burst and I essentially had a hole in my intestine. I
was given the directive of eating high-fiber, whole grains, and
avoiding hard to digest things like nuts, seeds, corn and animal skin
(no more chicken wings, boo). Red meat is also frowned upon. This is
an oversimplification, but is the basis for how I have to eat
potentially lifelong if I want to avoid another burst-intestine
episode. So there's that to look forward to.

So with the existing dietary restrictions, I add to that the belief
that tofu and soy based products can increase hormone levels, and
since my tumor was listed as having "hormonal involvement" it is a
good thing for me to cut down on those products, at least at this
point until I know more. There's another big chunk off the list.

In addition to that, there is a belief (that I think has much merit)
that cancers thrive on acidity. Bringing one's body as close to ph
neutral as possible would be beneficial to fight that. So avoiding
acidic things like tomatoes, oranges, coffee, etc. is my choice. They
don't really sound all that good either, so that must be my body
talking.

Related to this, during chemo a body's mucous membranes can and will
become fragile. Avoiding the acidic foods (and using mild toothpastes,
rinsing with baking soda and salt, and using soft toothbrushes will
help prevent mouth sores (gross, again).

Additionally, there is a widely-held belief that cancers feed on
sugars. A quote from my PET/CT Brochure: "Growing cells use glucose as
a primary source of energy. The faster cells grow, the more glucose is
consumed." This is used as an explanation of how the PET/CT works, but
is a pretty clear indicator of the link between sugars and cell
growth. So, eliminating as much as possible from my diet all refined
sugars, alcohol, processed foods, fried foods and junk foods will help
to starve out the cancer. I have a friend that beat his cancer into
remission following this last diet. Regardless of the effect on the
cancer, few would argue that this would be a positive change in
anyone's diet.

Lastly, one's immune system is compromised during chemo. I am a
believer in organic foods, and with my heightened sense of smell,
conventional (normal) vegetables and fruits etc smell like bleach and
chemicals. Really. Organic stuff smells clean and is (because of the
lack of pesticides, chemical fertilizers, etc.) easier to digest and
easier on the immune system.

I went into this cancer thing deciding to become vegetarian again, but
only lasted about 5 days. With no tofu or nuts, protein is hard to get
for a vegetarian (unless one wants beans and rice all the time). Baked
chicken sounds and tastes awesome, and I have been listening to those
cravings and having it. Sushi is I think the perfect food, and sounds
great if a little rich for me. Eggs have turned my stomach recently,
being a little too rich as well. I have been craving cheese which is
interesting, since it is very rich, but is also a source of protein
and calcium. My information conflicts on the subject of cheeses: my
chemo handbook says mild cheeses, but these tend to be fatty. Hard
cheeses are better from a holistic nutrition point of view, but are
usually sharper and may be harder to digest and/or keep down. So I'll
experiment and see what sits the best.

So: Vegetables, melons, non-acidic fruits, chicken, turkey, fish,
brown rice, whole grain breads and pastas -- with liberal amounts of
ginger and garlic, and some cheese. These are super-healthy things
that are good for a body, don't interfere with my diverticulosis, are
beneficial during the chemo and and all sound good. Really good. In
fact, I could go for a table full of all of those things right now.

When you're strange

The oddest thing about how I feel is that I have nothing to compare it
to. Its not like the flu, exactly. I feel weak all over, my arms and
legs heavy. It reminds me a tiny bit of my first few days at high
altitude in Colorado, except that I am able to sleep (altitude
sickness can create insomnia as well). I know that my cell counts are
likely dropping, and its a little scary to know that your blood is
slowly getting weaker with the worst yet to come. My head feels fuzzy,
unclear, its hard to concentrate on things. There are a host of things
that I need to deal with that are pressing, but all I want to do today
is sleep and cry, though the latter still evades me.

I went to the Acupuncturist today. I am a fan of oriental and
alternative medicines and I feel that they have done me great amounnts
of good in the past. Its a subtle but powerful medicine. I would never
use it in place of western medicine for cancer treatment, but it is a
great addition. Its been nearly 5 years since my last treatment and I
felt woozy and emotional afterwards. After getting home, I had the
strong sense of two burning pipes of energy running up the back of my
head. My nausea came and went in waves, feeling like it is on the
brink at any moment. I'm a very violent vomiter, from what I remember,
and I worry that once the floodgates open it may be hard to close them
again.

I'm missing my J and feeling like I'm scraping the bottom of the
barrel to have enough energy to play. But the gigs give back, too. Its
a net gain, and when I'm in the moment -- I'm in the moment and flying
high. The band is amazing, covering the rough spots and helping me
when they sense I'm forgetting or lacking. Great people all the time,
saints right now.

I had some high fiber cereal with almond milk this morning and a bowl
of brown rice with chopped garlic, ginger sauce and soy sauce a minute
ago. Its staying down well and calmed the nausea. I feel like I need
some more protein, though, and am at a loss for what to have other
than peanut butter.