Friday, July 30, 2010

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.

Thursday, July 29, 2010

The New Do


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.

Wednesday, July 28, 2010

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.

Tuesday, July 27, 2010

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.

Monday, July 26, 2010

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.

Saturday, July 24, 2010

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.

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.

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.

Friday, July 23, 2010

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

Thursday, July 15, 2010

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.

Wednesday, July 14, 2010


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.

Tuesday, July 13, 2010

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)


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

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

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

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

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

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


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!"

Monday, July 12, 2010

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.

Sunday, July 11, 2010

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

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

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.

Saturday, July 10, 2010

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

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.


Feeling the most nauseous I have all week. Had 2 pieces of toast today and then some lomein at about 1:30 am. It sounded good at the time and is staying down so far. I took 2 naps today and had a short walk. My gig went well and the guys pulled me through nicely. Met with an herbalist and acupuncturist today that will be covered by Healthpartners, and also had a brief but rejuvenating Reiki treatment today. A tiring day in all.

Friday, July 09, 2010

No worries

The hiccups persist off and on but haven't kept me awake. Nausea is there but controlled. Tiredness and flu like symptoms are present but manageable as well. All in all it just feels like allergies or a hint of stomach flu. Should be good for my gig tonight, though I may sit rather than stand.

On Monday I do the PET scan, and then more Chemo on Tuesday. Whee!

Wednesday, July 07, 2010

F-ing Hiccups!

I never realized that if you hiccup for 7/12 hours straight your
throat can get sore. At least its good that my only real side effect
so far is good for laughs.

So much for "normal"

I actually feel pretty fine today. I didn't sleep that well last
night, and was up unit about 3 or 4 am. I finally took 1/2 an Ambien
(after I was fairly sure that the anti-emetic had worn off) at about 3
and that helped me sleep until 11.

Today I feel a bit achey, as they said I would. Some mild flu-like
symptoms. My temp is 96.9, so no sign of a fever. One a few mild waves
of nausea last night at about 9pm but I was taking preventive measures
against that so it dissipated quickly. No vomiting or urge to so far,
which was one of my big worries.

My biggest complaint at the moment: hiccups. Fairly persistent now for
about an hour and a half. Its an annoying, if livable, side effect
that I was unaware of.

Have no appreciable hunger but since I'm not having nausea I'm
remembering to eat healthy high-fiber stuff anyhow.
I may even make it to the gym and do some light cardio. Certainly I
should walk the dog anyhow.

p.s. I still have as much hair as I did yesterday morning. The hair
loss "normally" takes a few weeks, FYI. I'm trepidacious about "re-
rolling" my hair and getting something completely, randomly different
afterward. I'm kind of used to my hair after 43 years with it.

Motorcycle, again

A newly-revised link for the Motorcycle ad on CL. Please pass on to
any who you think might be in the market. A steal at this price!
Thanks very much!

Day #1, ?? to go.

Had a peculiar, imagined scent appear as I was driving home from the
clinic. I felt that I smelled magic markers very strongly.

Here at 1:53 am I find myself still too awake to try to sleep, though
I took my knockout-pill: the Lorazepam used as an anti-nausea pill and
an anti-anxiety med. It seems to work well for both of those, but its
well established that it makes a person very groggy as well. They told
me to take the Lorazepam tonight, but the they advised me *against*
taking the Ambien and the Lorazepam, as that would be a dangerous
amount of mellowness. But the Lorz is not working as well as the
Ambien, so that's why I'm still up.

I have some minor flu-like symptoms, as they said I would. I feel
achey and have a bit of a headache. Nothing too terribly bad,
honestly. But I suspect (from all accounts) that tomorrow (Wednesday )
will be the hardest day of this week. I'll be at those gigs on Friday
and Saturday, but I may have to resort to Red Bull. I think I should
get prescription uppers if they're going to give be so many downers.
FInally starting to feel just a little crosseyed from exhaustion,
which is about the only way I know I will fall asleep. Laying awake
for hours: that's prime-time for the old noggin to race in unwanted
directions. The person who just found out about their prostate cancer
has had similar sleepless night recently, and called this "The Long
Dark Night of the Soul," where you dwell on the worst possibilities
and star really thinking about your own possible mortality and how that
might affect those in your life. When you start to make mental lists
of how you'd divide your belongings and what you'd do with your dog,
you know this isn't helping anything. That's where the Ambien --
blessed Ambien - helps out. But tonight I'm supposed to be on my Anti
Emetic, so no Ambien. Boo.

I'm not sure how many rounds of Chemo I will have, I keep getting
different answers. The lowest I've heard is 3, the highest 6 rounds. A "round"
in my case has me being treated once, then treated again 8 days later,
then 14 days off to recover. This cycle continues 3-6 times. So the
actual IV-stick and wait in a comfy chair only happens 2 days out of
every round or cycle. The worst is not the treatment, its the after-
effects. So far, very mild, and hopefully they'll stay that way.

Tuesday, July 06, 2010

Cisplatin 1, Me 0.

The cisplatin is done for this week. It's too early to feel any side effects (which might take a few hours to a few weeks). While it's going in the Cisplatin doesn't feel like anything. The Gemzar (Gemcitabine) is running now and that stings a bit. It's livable, though. It just feels like someone lightly pinching my arm near the IV site.

Into the Rabbit-Hole pt. II

Just saline for the fist hour and a half or so, since the Cisplatin is very hard on the kidneys. Then the Gemcitabine and finally they'll finish the treatment today with another 1.5l bag of saline.

The Cisplatin is the evilest of the two drugs in my opinion, with potential to cause hearing loss, numbness in the fingers and toes and kidney damage. I can deal with tiredness, hairloss and nausea, but I'd like to emerge from this with the ability to still play and hear music. And to stay off dialysis. Again, I'm doing my best to stay positive.

Into the Rabbit-Hole

T-Plus 27 minutes.

Running very late at the Chemo center, still haven't begun. Busy here, many people with headscarves or shaved heads. Most older than me, but it's a little hard to tell sometimes who the family are and who the patients are. The Emend is kicking in and I feel very tired, napping sounds good. My bro, mom and R are here with me.
I did some research last night on the drugs I'm scheduled to get today and was reminded again how serious this all is. Gemcitabine and Cisplatin are highly toxic chemicals with sometimes severe and occasionally permanent side effects. The worst case scenario is very scary, especially for a musician. It's a trade off against the very real scariness of the cancer continuing to grow. To intentionally put poison into your body in an attempt to kill another poisonous growth is to turn your body into a battleground. While my immune system is trying to restore equilibrium, I will be immunosuppressed and susceptible to sickness and infection at a minimum for the next 3 months or so. Good thing I'm not working with kids right now.

It begins.

"Emend": My preventive anti-emetic (anti nausea) pill, day one.

Sunday, July 04, 2010

News and more reflections

I have just found out that a person very close to me has been diagnosed with prostate cancer, and just received the diagnosis late last week. Very surprising news that never comes on any sort of

Q: What do I say? A: What people have been saying to me, and what has been very helpful: you'll get through this; and know that I'm thinking about you and willing to help in any way that my particular skillset allows. You are not alone. I love you and care about you. The most important thing is to speak from the heart. There is no script, no right or wrong thing to say.

Identify the people in your lives that would leave a hole if they weren't there anymore, and man-/ woman-up and *tell* them, even if they don't have a serious health condition. Easier said than done sometimes, for all of us. I am no world-wise sage, but I can tell you that I feel much closer to many as a result of the outpouring of support that I have received. Notes small and large, phone calls, even just hugs. And I thank you for it, sincerely.

Friday, July 02, 2010


I'm at this convention, playing and having a very nice time as planned. I have noticed here that people treat me differently, and not necessarily in a good way. There have been some awkward conversations, as if some people feel like they're supposed to say something and don't know what to say, so instead just stare at me or even appear to avoid me altogether. I find myself wondering if some think that cancer might be catching, like AIDS or something?

Everyone deals with this in different ways, both the person with the ailment and the people in their lives. I have already seen the spectrum of reactions, from those mentioned previously to tears to poorly-timed but well intentioned humor and everything in between. I'm new to this, but I have already been reflecting on my actions with some of the people I've known that have bad serious ailments. There is a sense that I have needed to contact them right away and say something, otherwise I'm not a real friend, etc. I have felt it: like there's some window past which it it too late to call or email, etc. Being on the other side of the fence, I hope no one feels that way with me.

This convention that I'm playing at is a science fiction convention, and people dress up in all manner of costumes. Darth Vader, Klingons, characters from cartoons, tv shows, etc. I saw one woman that gave me pause: she was thin and pale, perhaps 25, with a chemo-shaved head. She was in an electric wheelchair and wearing a hospital gown. She was either a fan that was coming out to the con while very sick (and hooray for her, if so), or wearing a costume that was in very poor taste.

And this made me think that I'm a part of that culture now. Whether I like it of not, I'll always be a part of that club. And I can see it being a big part of someone's personality and daily life, or a minor part. I have no idea how it will sit with me. Certainly it is a big part of my life right now, but I hope that it will be only a minor matter -- requiring only occasional checkups -- a year from now.

Apropos of nothing

Thursday, July 01, 2010

Decisions, and a plan

I met with a new oncologist today, this one at the Minneapolis Clinic
location. Very knowledgeable, very patient, very honest, great sense
of humor. White hair, white gunslinger mustache, kind demeanor. I will
call him Dr. Grampa. My goal has been to take Dr. Hunter's (the Mayo
Dude) advice and do the chemo first. I was trying to get ahold of Dr.
Ungawa until I realized that this ultimately required only the buy-in
of my oncologist. Ungawa seemed a little sheepish today when I talked
to him on the phone and told him that I was following the advice of
the Mayo doc. I still may have to use him for the surgery, so I didn't
burn any bridges.

Dr. Grampa agreed to do chemo *before* surgery, which is great news in
my opinion. This is a newer way to do things, and it just now becoming
the brand-new standard when patients are young enough to handle the
chemo first. Occasionally an older patient may have complications from
the surgery and it may delay the start of chemo for a few months,
meaning the cancer will have time to spread. Doing the 3 months or so
of chemo beforehand will potentially kill the cancer, but I still need
to plan on having a "partial cystectomy" afterward. This is a fairly
invasive surgery to remove part of the bladder, leaving everything
basically the same as it was, except that I'll have to take a whiz
about 10% more often. Big deal, I say.

The chemo will begin this next Tuesday, July 6th. I am nervous. I have
heard widely varying stories of chemo reactions. I am learning that it
depends partially on the specific drugs they treat you with (I will be
treated with Gemcitabine and Cisplatin). On this regimen it is common
to lose your hair and feel nausea. As mentioned in another post, the
anti-nausea drugs can sap your strength even more so than the chemo
drugs, so lets hope that I don't experience too much nausea.

Many have asked whether there's any food they could bring over or
something during these treatments. I am hugely touched by this and it
means a lot to me to have such generous offers. Honestly, I have no
idea what will sound good or what I will be able to keep down, so I'll
wait a bit before taking advantage of the meals-on-wheels offers, if I
may, which may be a huge life saver later.

Many epiphanies today:

1) I reflected today on the apparent un-coolness of my cancer. I was
at the pharmacy picking up a few prescriptions and there was a fancy
breast-cancer survivor end-cap. Pink ribboned coffee mugs, key chains,
t-shirts... everything you can think of. Was there a urinary cancer
end cap? A single yellow ribbon? No. Clearly, I got a second-rate
cancer. Figures. People like breasts (who doesn't?) and as humans we
spend very little time thinking about our bladders, so perhaps that's
why. Still. Grumble.

2) On a less curmudgeony note, I remarked to R this evening that this
process could easily be very lonely or scary, and -- thanks to the
enormous support I have had -- I feel strangely un-lonely and un-scared.

3) And, I realized when driving past my old vet's office today that I
took it harder when my dog Mia was diagnosed with cancer than when I
got my own diagnosis. I don't know why this is, other than she was a
creature under my care: it was my job to watch out for her. I can't
really see the forest for the trees, I guess: its harder to view one's
own possible mortality from the inside than to see the possible
mortality of a loved one. Or at least it is for me.

On Thursday I will attend a mandatory "chemo class" at the
oncologist's with my mom, which I hope for her sake is nothing like a
Lamaze class: If they make her push around a fake I.V. pole the whole
time just to make me feel better, I may trash the place.

The weekend starts for me Thursday evening, and a merry weekend it
will be. I will play music, stay up too late, see old friends and be
as prepared as I may ever be to begin the chemo next week.