Skip to main content

I learned a lot on this vacation

CIMG0612I 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.

Comments

Popular posts from this blog

Fatigue! Part II - Maybe it is real?

Or it's actually Motivational Deficiency Disorder, MoDeD (pronounced Mo-Dee-Dee) for short. In a report this week by Roy Moynihan who reports for the British Medical Journal Austrailian scientists may have come across the reason for extreme laziness . The condition is claimed to affect up to one in five Australians and is characterised by overwhelming and debilitating apathy. Neuroscientists at the University of Newcastle in Australia say that in severe cases motivational deficiency disorder can be fatal, because the condition reduces the motivation to breathe. Neurologist Leth Argos is part of the team that has identified the disorder, which can be diagnosed using a combination of positron emission tomography and low scores on a motivation rating scale, previously validated in elite athletes. "This disorder is poorly understood," Professor Argos told the BMJ. "It is underdiagnosed and undertreated." Who knew? Maybe I have MoDeD, from my attempts to become a...

My concerns reaffirmed today

When I was first diagnosed with MCL, I pretty much read just about everything I could get my hands on, I attended various conferences, and I talked to anyone who would listen. One of the most important lessons I learned, and which I've mentioned numerous times before was No one cares more about you than you. But in addition to that, I learned to fear the drug Doxorubicin , AKA Adriamycin, Doxil, Hydroxydoxorubicin, or more affectionately the Red Devil. Besides being a deadly chemical, as is the case with most chemotherapy drugs, it is one of the few chemotherapy drugs known to cause permanent heart damage. I even heard Dr. Sandra Horning , a noted Stanford lymphoma specialist, state at the first lymphoma conference I attended in LA, there was no evidence Doxorubicin provided any added benefit to chemotherapy protocols. This was music to my ears, since Doxorubicin is very common in most lymphoma treatment protocols. And even though Dr. Horning has since changed her tune [which my sk...

You can't make this shit up. Really!

We had been planning to see a taping of Undateable Live for a few weeks now, and we actually made it there tonight, but on the way something awful happened. A terrorist attack in Paris. Now it might seem heartless of me to be thinking about my misfortune, having to wait over 2 hours for our driver ( the show was cancelled) ), to pick us up, when so many others are suffering an unimaginable fate, but it is what it is. If nothing else, this few hours has provided a lot of time to think [blog], what might have been, if it weren't for the likes of Republicans, and the spawning of the two individuals I blame most for the state of the world today, George W Bush, and Dick Cheney. Those two, in only 8 short years, managed to do more to destabilize the world, creating the chaos there is today, than anyone could have ever imagined. (What Saddam Hussein must be thinking now.) If anyone deserves blame for the carnage in Paris today, it is George W. Bush and Dick Cheney, and they should b...