Sunday, September 23, 2007

Hold On, Rough Road Ahead

This is a short note after that first week of chemo. The year's respite obviously erased some of the memories of the chemo experience. I don't know if it's because I forgot, or because the revlimid adds a rougher component, but this week was tougher than expected. That being said, I was able to conduct a mediation mid week, and I'm sure no one was aware I was dealing with chemo, so I am encouraged by that. I know I'll adjust to the drugs, and am already looking forward to the week off. And FYI, I survived the MRI--2 hours, 15 minutes lying motionless on the steel table in the tube. While it didn't hurt, it certainly was a mental challenge. I don't expect to get the results until I see Rifkin again in 2 weeks.

Thanks to everyone for the donations to Light the Night. We've raised more than $6000!! And it seems that over the past year, many of you have forgotten how to log in to the blog. I know that because I've received quite a few emails from people this past week, offering support and encouragement. Messages in those emails used to show up on the blog. No problem. I appreciate your support in whatever form you choose to send it!

Thanks for continuing to be there for us.

Tuesday, September 18, 2007

The Big 3--Florida, Chemo and Light the Night

Our 25th wedding anniversary trip to Florida was the perfect exclamation point to our celebration of being married 25 years. The house we rented was beautiful, was a short 5 minute stroll to the beach, located right next to the swimming pool, and was within 10 miles of more seafood restaurants than we were able to sample. Lazy days at the beach or pool, followed by a cocktail, and then a seafood dinner were the order of the day. But the best part was one evening when Susan and I were sitting there and we realized that we were each sitting with our best friend and wouldn't want to be anywhere else. Now for me, that's no surprise. For what I've put Susan through these past years, one would have good grounds for questioning her judgment!

This trip note cannot pass without mentioning that my brother Mike joined us for a couple of days. He promptly went to the beach and sunburned himself, just like any 12 year old boy would do. The dinners out were quite hysterical as we introduced ourselves to the waiters as the 3 of us being on our 25th wedding anniversary. Silence usually followed, which invited our explanation--"my brother has been there with us from the very beginning." But we hadn't seen Mike in awhile, so it was a nice visit and we sent him home looking like a lobster.

We planned our trip to consume as much of the waiting time before starting chemo, so we didn't arrive back in Denver until 11:30 p.m. Sunday night. I saw Rifkin Monday morning and was off to the races....with blood draws, velcade infusion, informed consents, blah, blah, blah. Yes, we have been there before. The drug combo is so complicated I won't bore you with the details, other than to say, I get some infusions, take some pills every day, some 3 times a week, some only on Mondays. I had to go home and write down the pill regime for each day for the next 3 weeks so I don't screw it up. Now, this raises the question: who figures this stuff out? and how many guinea pigs do they use before they think they understand what the best combo and sequence is? Or I am a guinea pig? Don't answer that, please. Bottom line? 2 weeks on, 1 week off, for minimum 3 to 4 months, provided we're seeing some progress. Oh, my poor family. Susan just told me this morning that I spoke a total of 10 words all day yesterday and I haven't shut up this morning; due to the steroids, no doubt, which have had me up since 4 a.m. Anyone want to join us on this roller coaster ride? No, I didn't think so.

The bad news is that I am having more back trouble and have a new MRI scheduled for this Friday. This time they will scan the entire spine. Are they thinking I'm spineless? Although I told Rifkin precisely where I thought the trouble was (T5, i.e., the 5th vertebra of the thoracic spine), he told me he appreciated my diagnosis but was going to order a scan of the lumbar, thoracic and cervical spine (all that's left is the brain, and we all know there is nothing there, so don't bother). This scan I suspect will require me to remain motionless on this hard steel plated table inside a tube that bangs like a bad drummer, for about 2 hours. I withstood a 1 1/2 hour scan 2 years ago when my back collapsed, so I know I can get through this, but it definitely doesn't get a rating on the "I'm having fun" scale. The worst part is, I fear I won't fit into this nice little steel cubicle. It was a very tight fit when I weighed 40 pounds less!


Last year many of you supported my Light the Night walk by providing more than $10,000 in donations for blood cancer research. Your support has helped to make available a whole host of new chemotherapy drugs that are keeping people like me alive.

Unfortunately, multiple myeloma is incurable and I will be starting a new chemotherapy regime soon. The good news is that a wide variety of new drugs, and drug combinations are now available that were not being offered last year. Discovery of new drugs and drug combinations is essential to all multiple myeloma and other blood cancer patients, because the disease often “gets smart” and drugs lose their effectiveness.

I have once again set a goal of raising $10,000 for the Leukemia and Lymphoma Society to aid it in its quest for new treatments for blood cancers. Your donation is tax deductible and will be greatly appreciated.

Many of you have already contributed, as evidenced by my having raised over $5000 already. We're more than half way there, with about 10 days to go. If you haven't donated yet, I would very much appreciate your considering a donation to the cause. A donation of any amount will be greatly appreciated, whether it be $25, $50, $100, $250, or $500. You can donate by going to my web page which has been set up specifically for this purpose. Go to this site, click on the Donate button, and follow the directions:

If you would prefer not to use the credit card pledge, you can instead send checks to me, made payable to The Leukemia & Lymphoma Society. Please send any checks to me at 145 Garfield St. , Denver , CO 80206 so I can present them the night of the walk.

Regardless of whether you donate, you are invited to participate in the Light the Night Walk, which starts at 7 p.m. at Washington Park in Denver on September 27, 2007. My team will be meeting in front of the main stage at 6 p.m. Last year we had about 20 friends show up for the walk. Let’s see if we can beat that number this year.

Thanks again for your support of this very personal cause.

We've received many calls, voice mails, cards and letters expressing your support for us in the coming months. We appreciate everything you do for us. Stay tuned.

Much love,