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.

Chemo, Drugs, Studies and More

While the reality of more chemo -- right away -- sets in, I also have other decisions ot make and new information to process.

The Drug

One of the things we learned at Mayo this week is that I have graduated from the platinum-based therapies (cisplatin and carboplatin) and into the docetaxel realm. This is a common "second line" chemo drug for people in my situation. Basically, this is the drug that is used when the other ones appear to reach the limit of their effectiveness and is used after the initial round of post-metastasis chemo.

I'm still educating myself on the side effects, but the most common ones sound like what I've come to expect from a chemo drug: tiredness, nausea, hair loss, loss of appetite, and temporary decrease in blood cell counts, to name just a few. I had all of those with both my past chemo series'.

Docetaxel can also cause loss of feeling or numbness and tingling in the extremities, and the irritation or loss of skin on the hands of soles of the feet. I had the numbness/tingling with my first chemo series when I was on cisplatin, but this most recent series on carboplatin had virtually no side effects in that area.

Rarer -- though scarier -- side effects include seizures.

On the list of the rarest side effect are: holes in the intestines, liver failure, and death.

I realize that these side effects lists paint a worst-case scenario, but you have to understand how difficult it is to take a drug that lists "death" as one of the possible side effects, however uncommon.

Treatment would be given once every 21 days (or one week on, two weeks off). I have a feeling that this long recovery time is due to the harshness of it.

The Study

There is also an offer before me from Mayo. They're inviting me to take part in a clinical trial of two new drugs. These would be given in addition to the docetaxel, also via an IV, One would mean an extra treatment (two weeks on, one week off) and the other would be the same schedule as just the docetaxel.

The control group at Mayo is given just the Docetaxel, meaning that the worst case is that I'd get exactly what I'd get from my local oncologist anyhow.

One advantage to the Mayo study is that I might get added benefit from one of the experimental drugs. The downside is that it could also be damaging, and some of the side effects aren't that well confirmed. It doesn't cost me anything (there is also no compensation for it) but I can feel like I'm a part of the cancer research process in a way that few get to be. Cancer Walks and such can be great for building morale and bringing survivors together, but actually physically helping researchers test a new drug that could be helpful to millions would make me feel like I'm a big part of the bladder cancer solution, as opposed to just being a statistic. And you know how I hate statistics.

On the downside, I'd have to drive (clarification: I'd need to be driven) down to Rochester at least once every 3 weeks (and possibly twice) for a very long day that would on some occasions include an overnight stay because I might have more tests the next day.

If I need to stay down there, I could stay for free at the Hope Lodge right across the street from Mayo. The Hope Lodge is essentially a free hotel that houses people undergoing cancer treatment. Its tough to get into, and there is a waiting list besides. Normally you need to be doing ongoing treatment and there is a minimum 2 night stay, but study participants are different. I am assured I could stay there any time I need with no problem. After a 12 hour day, just staying in Rochester would be preferable, I'm sure.

Its a big hassle to get all the way down there, and when you're already nauseated, spending 3 hours a day in a car is hell.

If treating in Rochester, I'd also need to co-ordinate (at the very least) someone to stop by and let Boo out on each of those long days, and possibly have someone prepared to pick her up and take her over night.

The advantage to doing the chemo locally, where I've done all my previous chemo, is that its 10 minutes from my house, and anyone can drive me. I know the facility and the people, though they're not perfect by any means. I spend more time at home, more time with my dog, and less time in a car.

At either location, its 100% covered by my insurance, so cost is not a factor.

Mayo ought to have top notch care during chemo, though their infusion center looks more like an ICU. It's clean, but not terribly inviting. There are about as many glass-walled treatment rooms with beds in them as there are infusion chairs. I guess they get a lot more patients who are in a worse way down there.

Currently I'm making simultaneous plans with Mayo and my local oncologist (to cover all my bases) and will have to decide by tomorrow (Thursday) which route I'll take. The Mayo study coordinator needs to know ASAP. We'll all be discussing this in detail tonight and making a decision by tomorrow morning.

The Back

While at Mayo, we managed to meet with an orthopedic surgeon, who ordered an MRI on short notice, and was able to read the results by the next morning. Basically, my back pain is a result of "arthritic changes" in the vertebra of my low back. It does not appear to be linked to the cancer. Injections into the disc (such as cortisone) are the therapy that is recommended, though (for various reasons) there wasn't time to have them done before I left Mayo. I will have to plan to go back down next week to get the shots. I have found some temporary relief by doubling (as per the new doctor's recommendations) the amount of Naproxen Sodium (Aleve) that I was taking. I now take two with breakfast and two with dinner. This is twice the recommended dosage. Based on the success of the Aleve, I have been able to come down a bit on my Oxy-tin, which is a huge relief in many ways.

So tonight will be a busy (yet hopefully productive) one, while we decide on the the best option.

The Family

In addition to all of this, I learned on Monday evening that an Aunt (my mother's sister) that I was very close to had just passed away unexpectedly. Needless to say, its been a hard week for everyone in the family.