Living with MCL

At least you can negotiate wine prices. I didn’t try negotiating menu items.

Just returned from a weekend vacation in Las Vegas to celebrate our [Edie and me] 35th wedding anniversary. WOW! 35 years, that’s longer than a lot of people I know have been alive.

Oh well, but I digress!

All in all, this weekend was one of the more pleasant and memorable ones. We stayed at THEhotel at Mandalay Bay in a very comfortable 725 square foot suite. We saw Bette Midler on Saturday night, which surprisingly [at least to me] was very enjoyable. We then ate at Bradley Ogden after the show, Aureole on Sunday night [our anniversary], and RM Seafood Monday night.

All the meals were great, as were the wines. The most memorable being the 10 course dinner we had at Aureole on our anniversary, which is the main reason I’m 7 pounds heavier today, than when I left on vacation. But the best part of the weekend was negotiating the price for a bottle of wine at RM Seafood Monday night.

As I was perusing the wine list, I noticed a 2006 Dumol, Ryan’s Vineyard, Pinot Noir. I’ve had the wine before, and it was great, but the price at RM Seafood was nearly twice the price of the same bottle at Campanile in LA.

There were a few other good bottles of wine I could have ordered instead for less money, but at that moment I was in the mood for the Dumol. I just wasn’t willing to pay the price on the list. So after already having two glasses of wine in the hotel lounge, while we watched the Steeler game, and not thinking the waiter would accept my offer anyways (the wine manager was gone for the evening), I offered him 25% less for the bottle. Without hesitation, the waiter said “sold”.

Damn! Had I’d known it was going to be that easy, I would have offered him a lot less. Oh well, it was worth it, and it was a fitting end to a great weekend.

So that experience taught me a valuable lesson. No matter the circumstances, you don’t always have to accept things the way they are, or appear to be. Very little in this world is fixed in stone, and if you want something you think may be out of reach, you shouldn’t be afraid to try to reach it anyways. You never know, as in this case, you might just be successful. And besides, the worst that can happen is the answer is no, and you’re no worse off for trying.

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.

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!

I don’t need a fancy car. My 1993 Lexus SC coupe still looks like new, and works just fine. I don’t need a big luxurious house on a golf course or on the beach somewhere. My 1800 square foot home, 3/4 of a mile from Eldorado Park golf course, and 4 miles from the beach is quite comfortable, and I don’t have the need to be traveling the world, spending weeks away from home, visiting exotic destinations.

But sometimes, despite not needing some things, you want them anyways.  A new Mercedes Benz E Class Coupe is one such thing I would like to have, but mostly I want to go to South America and visit the wine country’s of Argentina and Chile, and experience the eco tourism of Patagonia.

The only problem is, a trip to South America would entail a minimum of 15 hours of travel time (each way), and 3 weeks away from home [and off the bike], two [three] things I don’t relish. Plus I’m not sure Edie has her heart set on this trip as much as I do, as the trip to Patagonia does have some physical challenges.

So here I sit, trying to decide whether 15 hours of travel time, and 3 weeks away from home is worth it. I know I want to go [this could be a once in a lifetime trip], but I also know how much I enjoy the anticipation of traveling, yet once I get there, can’t wait to get home.

I also know I can go wine tasting, horse back riding, kayaking and white water rafting right here in the states. Travel time would be considerably less, I wouldn’t have to be away from home [and off the bike] for so long, and it would be considerably less expensive, but I wouldn’t be experiencing all the culture and uniqueness of South America.

BIG SIGH! I’m just not sure what to do.