My Own Personal Zenith

I was told that days 8-14 of my 21-day chemo cycle would be my "nadir", or lowest point, in terms of immune function. My blood test on Tuesday confirmed that my neutrophils were low (I had no idea what neutrophils were a year ago). They were not dangerously low, but were below human normal range, and low enough that I need to avoid sick people, watch out for fevers, etc. etc. Nothing really new there.

But what I do find fascinating about this new chemo drug is that it knocks me down so completely for about 8 days, and then I begin to recover steadily, to the point where I feel very close to normal. Compared to the last drug combo of carboplatin and gemzar, on the new drug (docetaxel) I feel worse than before at the beginning of the round, and better than before at the end of the 3-week round. Currently I have no nausea, a decent appetite, am sleeping pretty well (even without sleep aids) my mood is good and my energy, while still low, is enough that I can take care of things like walking the dog around the block, driving, doing dishes and laundry, etc.

If the opposite of nadir is zenith, then I believe I am reaching my energy zenith. The horrible metallic bitter taste has faded almost completely, water tastes normal again, and my mouth doesn't feel burned. 

This is a pretty big range to experience over a 3-week period, but it gives me continued hope that this chemo will be manageable. When the chemo nurse said, "I think you'll really like this chemo," (and she really did) perhaps she meant the last 2 weeks of it. I don't know.

I'm nervous about the next treatment, mostly becuase I know I'll feel terrible afterward, but at least at thius point I now what *kind* of terrible I'll feel, and for about how long. Knowing that it's temporary makes a world of difference for me, psychologically.

Acupuncture, my secret weapon

To a large degree, I credit my post-chemo recovery to my acupuncturist, with whom I've been working for nearly 2 years now, seeing her once a week, every week. She's good enough that she deserves a plug: Christine Gendreau, at River Island Acupuncture in St. Paul. I experienced a night-and-day change from day 8 to day 9, largely because I had acupuncture on day 8. Some think acupuncture is "out there", woo-woo, psychosomatic healing, and with some acupuncturists I think it can be. Everyone has branches of medicine that they think are bunk. I have talked to people who said "yeah, I tried acupuncture once..." its subtle yet powerful medicine. The needles (and I don't like needles) are so fine that they are generally sensation-less going in. I find that it takes a few treatments for the acupuncturist to get to know you and to figure out what your body needs. Christine, by this point, knows me very well and has the ability to succeed where a drawer full of pills failed. Example: digestive troubles, brought on by the opiates, resolved within 45 minutes, drug-free. My mood, terrible and dark one day -- sunny and upbeat the next, following treatment. Again: drug-free. Acupuncture can address nausea, appetite, etc. with great success. My back also experienced about 60% relief immediately using acupuncture. When my neutrophils were low, a treatment helped to bring them back up to a reasonable level within a few days. Just a few examples. And acupuncture is covered by many insurance plans, these days. I know that Christine takes HealthPartners and possibly more.

Sadly, my insurance (Medica) doesn't cover any acupuncture as far as I can tell. I pay 100% out of pocket. And even so, I go every week.

Check it out, but do yourself a favor and go 3 or 4 times. You'll notice a difference, I guarantee.

I recommend acupuncture strongly to anyone going through chemo. It can mitigate the side effects to a very large degree, and I consider it to be one of the absolute, most powerful tools in my post-chemo toolbox.

There are diferences in Acupuncturists and certification thereof. Some doctors and chiropractors offer acupuncture (usually limited to pain relief) but many go through a fast-track, abbreviated program that can be as little as 200 hours. Most dedicated acupuncturists (most are NCCAOM accredited, in my experience) go through an arduous, 2,000 hour (or more) program that takes many years to complete.

Some veterinarians offer acupuncture as well, which I jokingly refer to as dogupuncture. Watching acupuncture being used on my dogs was actually the turning point for me in believing that it is not psychosomatic. A dog doesn't have any reason to believe that this needle being put in its back should help him to calm down and have less separation anxiety, but when it clearly works -- you know there's something real going on, there.

And, while I'm on the subject: thanks so much to the anonymous donors who have bought me some treatments along the way. It is very touching and very helpful. Thank you. Sincerely.

Dr. Owen Wilson

I met with a new local urologist today as a followup to all the recent ER/hospital drama, and to find out what has been causing all the issues. Perhaps because it was caused by Mayo, they have been unhelpful in working with me to diagnose the problem. But maybe its just because its a mundane complaint in their world, and not very interesting. Regardless, its a good idea to have a local urologist for me, and doubly so since I'm getting frustrated with Dr. Hunter (the Mayo urologist) recently. He's a great surgeon, but I think he's dropped the ball a few times for me, recently, and may actually be to blame for not catching the spread of the cancer (becuase he hadn't ordered scans that would catch it) before it metastasized. That last bit, if true, could be a megabuck malpractice suit. Maybe that's why he's distancing himself from me. It certainly seems that way.

The new doc is a year older than me, and we know some of the same people from my high school, etc. Tall and blond, he looks more like a retired surfer than a doctor. He reminded me a little of Owen Wilson so I thought the name was appropriate. He's communicative, friendly and knowledgeable, and doesn't seem to have that "me doctor; you patient!" barrier than some docs can have. The scoping procedures were as pain-free as they have ever been, which I appreciated. I also like his staff, which is a big plus. Jen liked him as well. I plan to continue with him as my local urologist, and will see Dr. Hunter at Mayo only as needed, now.

His guess is that the trouble could have been (as I suspected) some damage to the prostate during the bungled catheterization at Mayo a few weeks back. Dr. Own Wilson says that the prostate is healing nicely, though.

With any luck, I won't have to go to the ER again anytime soon.

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.

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.

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.