Living with MCL

The reality that I’m not getting any younger, any stronger or any healthier, although I’m hoping I can at least say the latter hasn’t been getting any worse.

This has just not been a good week, and I’m not even referring to the episode with Sylvia on Tuesday.

I’m just not riding [my bike] well. I’m putting on a lot of miles (745 this month), but I don’t seem to be improving much, if at all.

I went for a ride on Tuesday, and had to modify it, because I just didn’t have any energy. On Thanksgiving morning, I rode with the club to Whittier, and had the worst time [by over a minute] up Turnbull Canyon, than I have had in over 5 years. Plus I was dropped by the group, on the way back. (Fortunately I was only about 3 miles from the house, so it wasn’t too devastating.)

But yesterday was the worst, when I wasn’t able to hang with the group for a second lap of the hammer zone.

I guess it could be the weather. I definitely don’t like this time of year, with its shorter days, and colder temperatures, but still, it bothers me that while my mind keeps telling me I can do it, my body keeps telling me it can’t.

I find it very interesting when comparing results of tests performed at Kaiser and the VA, all the results are better [higher] at the VA.

After receiving the latest blood test results (taken with 24 hours of each other) At the VA, my hemoglobin was 12.7 g/dl vs 11.5 g/dl at Kaiser, and my platelets were 212 thou/cumm at the VA vs 178 thou/cumm at Kaiser (both with the same reference range). Even my blood pressure was higher [not better]. At Kaiser, and when I check at home, my blood pressure always ranges from 110/60 to 120/70, but at the VA, it’s always about 130/80 or higher.

I can certainly understand blood pressure being higher due to the environment, and a shorter wait to have my blood pressure taken at the VA (little time to relax after a brisk walk to the doctors office), but why the hemoglobin and platelets?

Oh well, I guess that just goes to show you how much variability there is in the equipment and/or the technicians interpreting the results, and a good reason not to focus on the results of just one test. You have to look at trends.

Fortunately though, my total lymphocyte counts were about the same at 90 thou/cumm, which is good.

It all started Monday morning, when all of a sudden, as I was surfing the net working on my computer (a Mac) at home, the hard drive froze. Nothing I did could bring it back to life. So I took it to the Mac repair facility, where I was told the hard drive was no good. And I hadn’t backed up all my data. Fortunately the repair was covered under warranty.

Then there was the email from Becky which I alluded to yesterday, about changes to the quality policy manual at work, which hopefully has been mostly resolved. Becky, after confirming with PCC, has agreed to put all the changes in the export manual we already have.

Then yesterday I pissed Becky off, because I was in a hurry [to go home], and screwed up two planning documents which the shop needed, so they’d have something to work on today. (I was hoping to stop by the hospital  early enough to get the results of my monthly blood test before the end of the day, which didn’t happen.) Becky fixed the error, but she shouldn’t have had to since it was just carelessness on my part. Still she does share some of the blame, since she didn’t get me the documents when she should have.

All that though was pale in comparison to what happened on my bike ride this morning. The click in my bike, which I thought I got rid of for good about two months ago, returned. I had to turn around early, as the clicking was driving me crazy. I ended up only doing about 26 miles. Hardly worth getting up and dressed for.

But alas, the news hasn’t been all bad!

My blood test results were waiting in my email box when I got home this morning, and my platelets stopped falling. The platelets jumped back up to 179 thou/mcL (from 158 thou/mcL last month), and my WBC, although back up to where it was 2 months ago, was still below 100 thou/mcL. Everything else remained about the same.

Plus, my nephew was able to recover all the data from my fried hard drive, saving me $109, which is what the Mac repair facility wanted to charge to back it up for me. So I sprung for sushi.

I returned the bad hard drive to the Mac repair center, and I should have my Mac back by Friday, which will be a real relief [I hate my PC]. They wouldn’t let me keep the hard drive, nor would they order a new one until I brought it back. It seems since it’s covered under warranty, Apple requires the defective parts to be returned to them.

Oh and we also signed the final documents completing the refinancing of our house, which will save us about $100 per month. We’ll need that to pay for health insurance.

Now if I could only solve the problem with my bike, I might start thinking things were looking up, and that would really be a change.

I learned I don’t like going on vacations. Of course that’s really nothing new. I’ve always known that, but I can’t help myself. I just love the anticipation of going on vacation. It’s just that once I’m on vacation, all I can think about is getting back home.

[Is that what happens when you get old, and set in your ways, or is it just me?]

I also learned October is probably not a good month to go on vacation.

While this is supposed to be the warmest month of the year in San Francisco, it was anything but that on Saturday and Sunday. When we arrived on Friday, the weather was actually pretty nice. It was sunny, warm, and there was very little wind. Of course that all changed when the sun started to set. Not only did it get colder, but the wind picked up, making walking to dinner a little trying.

And it didn’t get any better the next two days, including the drive down the coast to Monterey on Sunday, where it was even colder and windier. We spent one night in Monterey, and then drove to Solvang the next day, where the weather, while not perfect, was much more tolerable. Plus the wine there is very good! We ended up buying 19 bottles in only a day and a half of wine tasting.

Another lesson I learned was not to drive a car into San Francisco. I definitely won’t do that again. Traffic is horrendous, and parking is unbelievably expensive. I ended up spending $54/night to park the car at the hotel where we were staying. [That is just ridiculous!] Next time I’ll fly, and walk (it’s not a very big city), or take a taxi or bus to where I want to go. $108 goes a long way in a taxi, and even further on a bus.

I also learned I don’t need to go to another lymphoma conference. For all the talk about how great our health care system is in the US, treatment options for cancer (which consist of infusing deadly chemicals into the body) haven’t really changed much in the past 40 years, except for maybe the reemergence of Bendamustine, an old East German drug [chemical] which is showing good promise in treating lymphoma. There is some new research going on, but nothing at all earth shattering, or that I didn’t know about already, but even those are years off. Hopefully I’ll still be around then, but I have my doubts.

I did get one piece of new information from of the conference, and that was, in addition to having MCL, I may also have Cutaneous T Cell Lymphoma (CTCL).

You see, ever since my diagnosis with MCL, I have noticed a number of lightly discolored spots on my chest and back. They never bothered me, they’re relatively small, and they’re not very visible, so I never gave them much thought, that is until I saw pictures at the conference which bare a striking resemblance to what I have. The spots make up well less than 5% of my body’s total surface area, so if it is CTCL then it is likely a very mild form known as Mycosis fungoides (MF).

In about 10% of the cases, MF can spread to the blood, lymphnodes and other organs, but the spread in very unpredictable. In most people it progresses very slowly, or often times, not at all, which after 7½ years, just might be my case.

Of course it is possible I don’t have CTCL, as I was told by the expert, at the lymphoma conference, it is rare to have both a T Cell and a B Cell Lymphoma (MCL is a B Cell lymphoma), but it has been known to occur. And I have often been told I am a one of a kind individual.

It will be interesting to see what my oncologist has to say about that at my next appointment.

Worst of all though, it wasn’t until I got home that I learned I gained 4 lbs. I wouldn’t think that was possible, only being gone 5 days. I guess 5 days off the bike, and way too much food and wine, definitely takes it toll.

But it is good to be home, back in my own bed and back to my regular boring life.