Passing

I got the news last week that one of my old motorcycle racing friends died unexpectedly of pneumonia while on a business trip. He and I shared a passion, a racetrack, and a birthday. I think we once calculated that I was just a few hours older than he. He was always faster than I.

It struck me as odd and quite unfortunate that a man who had raced from his earliest years until he was about 50 would die of pneumonia. In some backwards way, it reminded me that none of us is guaranteed tomorrow.

We'll all miss Laroy Montgomery. May he rest in peace.

No need to worry.

I haven't updated the blog in a while and people seem concerned. Don't worry, I didn't die. I've actually been living a relatively normal life and I'm trying to break the routine of being a full-time cancer patient. Ed and I are starting our life up again.

Facts: I feel better every day. I haven't woken up and expressed an epithet in at least two weeks. My energy and endurance levels are improving. My strength and flexibility are improving. My appetite is out of control!

I should probably mention that Ed is out of town at a ski resort some 9200' in the air, in a suite with a fireplace that overlooks the 5 acre ice skating lake they Zamboni every couple of hours. Yes, it's on someone else's tab.

On my side of the planet, this week has been pretty active. I rode the motorcycle over to the SCCA yesterday (Monday) for blood tests and a pamidronate infusion. The infusion center was backed up 1:45 and the whole procedure only takes 2 hours, so I was pretty frustrated with that. I got to the facility at 11:30 and got home at almost 6:00.

Today's fun started at 10:30 with a bone marrow biopsy. I have to admit that today's nurse was a complete pro at the procedure and it hurt about 1/5 of what my last "fully conscious" biopsy did. This was followed by a complete skeletal X-ray series so the docs can find the voids in my bones. I really want a set of DICOM images from this series. The whole set was done digitally and I wanna see the pics for myself.

I was out of there just before noon. 1.5 hours total time. Some of the departments are more efficient than others.

I have a blood draw and physical therapy tomorrow for 2 hours. I expect that's gonna hurt more than the biopsy....

Strong weekend

My energy and activity level has been pretty high all weekend.

On Friday and Saturday, I puttered around in the garage. Nothing really major, but it was better than sitting in front of the computer and blogging.

On Sunday I rode my motocycle about 100 miles until my butt got sore. (Gotta get some glutes back on me.) Ed made another pronouncement for Filipino food so we went to Kawali Grill again for dinner. I'm glad Ed says he's over this particular food phase. No more Filipino food for a while. I prefer a bit more diversity in my meals.

Monday (today), I installed the mechanical part of the cruise control in Ed's car. I'll do the vacuum and electrical another day. Layout and creation/customization of bracketry took up about 4 hours of the day. Doing the electrical part is gonna require crawling around under the dash of a very tiny car. Too much fun!

Holy Crap Two!

I just got back from the SCCA and a visit with Dr. B. The results from last week's electrophoresis were in. These are the magic numbers that quantify the level of my disease. We've been quite pleased to see these numbers drop over the months preceding my transplant, and they've dropped post-transplant too. But here's the shocker for the week:

IgA lambda (Beta region) - Too small to quantitate

IgA lambda (Gammma region) - Too small to quantitate

IgA kappa - Too small to quantitate

Total protein - 6.6 g/dL (placing me near the bottom of the normal range)

So what does it mean? It means that the single auto transplant WORKED. It means there are undetectable levels of the cancer byproducts/components appearing in my blood. It means we can assume there is very little cancer in my body.

We're scheduling a complete re-stage in the next two weeks. We'll know more then, but at this point, we couldn't have asked for better results.

Question of the day: If we found two donors, will I need them?

Holy Crap!

I just got an update from the SCCA on my allogeneic transplant.

They found two 9 of 10 donors.

Apparently the donors have already submitted new samples to the lab. This means they didn't reconsider their donation status (chicken out). HLA testing and retesting is currently underway at the SCCA lab.

So what are my feelings at this moment? Elated and scared to death. Elated at the opportunity, scared of the outcome. Ed and I have to talk about this.

There are no guarantees in the results yet because there's not been confirmation from the lab, but when you're told there probably won't be a match at all, and they come back with two, it's a shocker. I think Ed and I had our heads wrapped around me living out my days on a maintenance program. Now we have to revisit the scary options.

Drastic body changes.

You've read that my bilirubin has gone high and my platelets have gone low. I have no physical indications these things have changed and I won't get new blood tests until this coming Wednesday.

BUT, there have been some pretty drastic physical changes in the last 4 days.

1) All of the swelling, water retention and general edema disappeared magically on Thursday. It hasn't returned. What change did I make to effect this? I ate beans. No, I don't really think this is what turned the magic key, but I hadn't had beans in months and I ate a can. Odd coincidence.

2) Friday was the first day I started taking testosterone. It's administered topically as a gel that's applied to the shoulders and upper arms. It's supposed to be absorbed evenly over the course of the day, and the daily dosing keeps the levels even over the course of a month. There is value in having a fairly even level of any hormone in your body.

What can I say about it? My insurance doesn't cover all the cost, and I'm being charged about $70 dollars a month for my part (as opposed to less than $2 per prescription for everything else I take). It sounds comparatively expensive, but let me tell you, I felt shockingly male again for the first time in months and months.

Now, for you men who've never had a testosterone shortage and suddenly got it back, you have no idea what I'm talking about. Similarly, the ladies out there are clueless. Heck, I didn't know what I was missing until it magically reappeared.

I'm not talking about a sudden urge to pounce on anyone relatively attractive. I'm not talking about any physical manifestations. I'm talking about a sudden difference in attitude and sense of well-being.

Have you ever had one of those days when you wake you up and you just know the birds are singing and the sun is shining and the flowers are blooming? One of those days when you just feel GOOD? Springtime in your body? Well, that's what the testosterone did on day one and day two. Day three was pretty good, and today has been great. I got LOTS of stuff done today. My activity level has been high.

Anyway, surprising changes again. Maybe it's not a roller coaster, but it's an interesting log ride. We'll see if I make a big splash on Wednesday.

Roy Scheider

Roy Scheider of JAWS fame, died today of complications of Multiple Myeloma at the University of Arkansas in Little Rock. They're arguably the #2 facility in the US for MM. He'd been being treated for 2 years and died of a staff infection. He was 75.

Something's wrong.

I just got fresh blood test results from the SCCA.

My bilirubin levels have quadrupled in just 5 weeks. My platelet count is less than 1/4 what it was 5 weeks ago. If the platelet numbers continue downward at the current rate, I'll need another transfusion next week.

This is NOT good. Not good at all.

A visit with Dr. A

I spent some time with Dr. A today. He seems eager to take me on as his full time patient. In other words, he seems to want to absorb me away from the SCCA.

Somehow I feel he understands the SCCA's philosophy of "follow the program" and he knows that once you're out of the program, you sort of wander around not knowing exactly where you are. I guess he's BTDT.

I have an appointment with Dr. B at the SCCA on Wednesday. I'll see how that goes. If I'm being put out to pasture, I'll be happy to be have Dr. A as my primary. The guy is good, caring, concerned. He's also a much better "all around" doctor with solutions to non-cancer issues.

Anyway, Dr. A did some extensive labs last week. It looks like my M-spike, the magic "cancer number" has dropped again. If true, this is a wonderful thing. Unfortunately, Ed and I are concerned about the consistency between two labs at the different facilities. We prefer to err on the side of caution. Either way, the number is low and it shows positive results from the auto transplant. Now we just need to keep the number down.

One thing I asked Dr. A to test was my testosterone levels. I think I could have told him the test results before he got the little numbers back, but he was surprised to see how low the numbers were. Tomorrow I pick up a scrip that will hopefully return part of my biochemistry to normal levels of masculinity.

I think some of you are surprised how candid I am in this blog, but it's my intent to help everyone understand the complexity of the cancer balancing act. This is not a simple head cold. One major issue impacts various major systems, and those systems impact minor systems, and those minor systems sometimes get big enough to impact the major systems again.

Cancer patients and their caregivers balance spinning plates. You've seen this act before. Every once in a while, somebody has to go back down the line and spin a plate again when it starts wobbling. Well, I'm just telling you which of my plates wobble.

So, if you're a cancer patient, don't feel like you're strange when there are side-effects. Treat them as part of the disease. Resolve them as part of your cure. If you're a caregiver, appreciate that your patient/loved one might feel like he/she is falling apart. Be supportive. Spin those plates together.

(4000)

Yes, I've changed the template.

You'll notice I've changed the template of this blog. I find this version to be more easily read than the previous version. (For some reason, the previous version also developed an HTML problem so it couldn't display the title.)

In any case, if you really have a problem with the new black background, it's not because my mood or focus has changed. it's a simple matter of practicality for me.

New addition

We have a new addition to the household. You can read all about it HERE.

Two odd things for the day.

It's February 1, 2008 and we have newborn chicks outside the window (chattering incessantly). Our winter has obviously been quite mild. These seem to be a bit early. Maybe I'm wrong, but I've never heard this chatter so early. I hope we don't get a deep freeze in Feb.... I'm not able, nor should I rescue them. Nature will have to prevail.

The other oddity happened at about two in the afternoon. I was standing in the kitchen looking out the back window when our local bob-tailed raccoon, who shall now be known as Bob, walked calmly across the back deck. Bob only has about 4 inches of tail.

In any case, I stepped immediately into "home protection mode" and rapped violently on the window. Bob simply looked up at me, unfazed. Then he stood there, silently asking "What is it you want? I'm a raccoon. I live in the neighborhood and I'm passing through. Do you try to make the squirrels go away?"

So I rapped on the window again and waved my arms. His response: "Like I've never seen THAT before. You bore me. I'm going back to my business." And with that, he moved on from the minor inconvenience I'd caused him

I guess city wildlife is more familiar with us than we are with them. As long as he doesn't try to live in my attic.