Oct 072009
 

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.

Sep 222009
 

Saw my hematologist today, and we decided the best thing to do is wait another month.

We talked about possible treatments, and I was glad to hear she (my hematologist) was amenable to using Rituximab as a single agent therapy instead of going for all out chemo. I was also interested to learn she was surprised my platelets were as high as they were, considering the size of my spleen. She has seen several others patients, with smaller spleens than mine, exhibiting much lower platelet counts.

Removal of the spleen is another possibility, and could provide several years of relief, but there are a few downsides to that approach. Not only would I be off the bike for a few months, it will require the taking of antibiotics for many years, or even the rest of my life, until other organs take up the spleens functions, and the lymphoma has been known to spread to those other organs, including the liver, which would not be desirable outcome.

She even mentioned the possibility of radiation to the spleen, but I’m not too keen on that idea.

But after 7½ years of not needing treatment, and even entertaining the thought I may never need treatment, the decision to wait at least another month wasn’t a difficult one to make. After all, except for an enlarged spleen, I feel [mostly] fine. Plus I’m still convinced the green tea is the cause of the rapid drop in platelets, rather than a change in my lymphoma or my greatest fear, bone marrow failure.

So in the mean time, I’m going to cut back my green tea intake [again] to about 3 cups of tea a day from 4 cups a day, and my hematologist ordered new cytogentic tests, AKA Flourescence in Situ Hybridization (FISH) to see if anything has changed in my chromosomal makeup, i.e. new translocations, deletions, additions etc.

Based on those results, and the results of next months blood test, we should have a better handle on what, if anything, is going on. Plus it will give me more time to do additional research, and consult with some of other lymphoma specialists, I have had contact with since my diagnosis, including a few at the lymphoma conference Edie and I will be attending in San Francisco next month.

Sep 212009
 

As if the company I work for being bought out, and the onset of fall, with the weather changes and the much shorter days it brings isn’t enough, I just received my latest blood work today, and it was not to my liking.

Not only did my lymphocyte count drop from 94 thou/mcL to 62 thou/mcL (which may or may not be a good thing), my hemoglobin dropped back down to 11.4 g/dL, and my platelets continued on their downward slide, dropping to 158 thou/mcL from 172 thou/mcL last month, and 200 thou/mcL in July.

What’s really disappointing, I went on a pretty hard bike ride this morning, and climbed the 2 miles up to the top of Turnbull Canyon within 2 seconds of my best time this year. I was really feeling good, that is up until just now.

It’s always possible the hard bike ride, and the slight dehydration, may have skewed the results, but I’d have thought the results would be higher (like my creatinine, which was up to 1.2 today), not lower.

Whatever, something is going on. Either the tests are screwed up, my [enlarged] spleen is acting up, and imprisoning my platelets, or maybe my indolent MCL has transformed into something else. Either way I maybe looking at some sort of treatment sooner than later. (And I just booked a trip to Roatan in June 2010 with my dive group.) Sounds like a good reason not to make plans too far in advance.

Anywaze, fortunately I have an appointment scheduled with my oncologist tomorrow in the afternoon, so I emailed her to let her know she needs to start thinking about the next step. And I guess I’d better start doing some more research again. It seems after 7-1/2 years of thinking I may never need treatment, has left me somewhat lacking in knowledge.

And to think this all started when I switched to using Japanese green tea leaves in May, from the green tea I used to buy at Trader Joe’s and Fresh and Easy for $2 for 40 bags. Umh!

 Posted by at 4:33 pm
Jul 212009
 

When I got up this morning, I felt like sh@#&! I was just plain tired, made even more so, knowing my latest blood work had me with a hemoglobin of 11.5 g/dl. I was also concerned about the two nose bleeds I had on Sunday and Monday, and wondering if I was going to be able to ride my bike at all this morning.

I couldn’t even back out of riding [which at the time I wanted to], as I committed to do Turnbull Canyon, with a friend. So I made the best of it, put on a happy face, and headed out at 7 AM to meet Ed.

From the very moment, I left the house, I felt I was going to have problems. My speedometer was only registering about 16 mph, which was really discouraging as I felt like I was doing 18 or 19 mph, but I persevered anyways. There’s no way I was going to ever admit anything was wrong.

So we meet up, and headed for the Whittier foothills. I did my best to keep up with Ed, hoping only that I wouldn’t get another nose bleed, and would not fall too far behind on the hills.

As we reached the base of the first hill, Colima and Lambert Roads, Ed was kind enough to ride with me for a little while, but then soon took off on his own. I couldn’t keep up. I did manage to catch him at one of the fortuitous traffic lights, and briefly passed him, but he soon went by again.

But then, he slowed down, and I was able to catch and pass him shortly before the top. He did stay with me as we crested the summit, and continued down the other side, so I figured he was just being a nice guy, so I wouldn’t feel too bad.

We then continued on our way to the second [and last] hill, the backside of Turnbull Canyon. For the first little bit, Ed road with me, but I was starting to really tire, and told him it was ok to leave me. [I did know the way.] But soon after that Ed started slowing down again, and I was able to catch him, and even pass him.

But this time [I must have gotten a second wind] I kicked it in just a little, as I was passing him, to see if I could drop him, and much to my surprise Ed did not respond. I ended up beating him up the hill by about 30 seconds.

Now I’m not sure if Ed was just being a nice guy, but I didn’t really care. It sure made my day, and made the ride back home a lot easier, even with the slight head wind.

Thanks Ed!

Jun 262009
 

I just hate it when people ask me for advice about what I’ve done [and am still doing] to keep my MCL at bay for so long. I hate it because I really don’t have a good answer, and I don’t want to mislead anyone.

Sure I drink a lot of green tea, and a lot of red wine, but I’m not really convinced they have been effective in holding my MCL at bay. There just isn’t any scientific evidence proving their efficacy. I am hopeful, and believe that in moderation, taking only what can be obtained naturally, can’t do any harm. I won’t take and EGCG or Reservatrol supplements.

The main reason I drink lots of green tea is to ensure I hydrate myself enough, and I drink red wine, well… because I like it.

There are however, some practices I follow which I believe have been effective in extending my longevity, i.e. restricting caloric intake, and intense exercise, but I haven’t seen any scientific evidence to prove the effectiveness of those practices either, although there is this one anectdotal study on the restriction of caloric intake by Arthur B. Robinson, which seems plausible to me.

So despite everything I continue to do, I don’t have any illusions that there is a magic bullet out there. Principally, I believe it is just the luck of the draw, that has allowed me to last this long [without treatment], and the fact I likely received my MCL diagnosis earlier than most people.

Of course that doesn’t mean I won’t keep looking for that magic bullet either, nor do I plan to stop riding my bike, or drinking green tea and red wine.

 Posted by at 5:53 am
May 302009
 

Despite being a heavy drinker of green tea since my diagnosis, mainly for its cancer prevention, and hopefully cancer curing qualities, I recently have developed a new found enthusiasm for green tea.

Now whether it has been the green tea I have been drinking for the past 6+ years, my heavy exercise routine, or just pure chance that has kept my MCL stable, or at least [very] slow progressing, for the past 7+ years is certainly open to debate, but based on past research, I have chosen to believe green tea has at least helped to some degree.

So what has given me this new found enthusiasm?

Well, a friend of mine, and cycling buddy, was recently diagnosed with bladder cancer, and knowing my daily regimen called to ask my advice on green tea. He had already done a lot of research on the subject, so when I told him my obsession with green tea consisted principally of drinking the least expensive, decaffeinated green tea available (Trader Joe’s brand of 18 tea bags for $3, and more recently Fresh & Easy’s brand of 40 tea bags for $2), I felt like a neophyte on the subject.

I’ve always drank decaffeinated tea, because before my diagnosis I would get heart palpitations which I attributed to my drinking too much coffee. I knew that was the case, because after giving up coffee and caffeine completely, the palpitations stopped.

So in collaboration with my friend, Continue reading »