Merry Dexmas!

With the holiday season upon us, we are all supposed to look at the good things in our lives and be grateful for our blessings. That will be a bit tough for me this year. As of last week, I am now officially out of remission from Multiple Myeloma. My M-Spike reading, the protein reading that is the main measurement of the disease, has been steadily increasing over the last few months and has now reached .8 again. This means I will have to undergo treatment, and not the nice little, albeit really expensive ($8300 a month!), pills I take every night before bed. No, now I will be on an IV on Mondays and Tuesdays for a few hours while they drip Carfilzomib into my veins. I will also be taking a large handful of pills on Mondays, 13 Cytoxan and 10 Dexamethasone. That brings my Monday pill total to 36! The rest of the week it is only 13. The title above is a reference to the steroid Dexamethasone, which keeps you awake, gives massive amounts of indigestion and causes constipation so bad I have to take laxatives with my breakfast every morning. Sorry . . . probably too much information! It also causes personality changes, so if I seem grumpier than usual, blame the Dex!

I was hoping for a longer remission than just 6 months, hoping it would last long enough for me to have a stem cell transplant. Unfortunately, a recurring and extremely stubborn eye infection kept me from having my stem cells harvested. Now that the eye infection is gone, my M-Spike is too high to have the stem cells harvested. The plan is for me to go on treatment for a couple of months to get the M-Spike down and then do the stem cell transplant.

In an autologous stem cell transplant, they use your own stem cells. They give you a drug called Neupogen, which causes your bone marrow to produce more stem cells, which are released into your blood stream. Then they hook you up to something called an aspheresis machine, which filters the stem cells out of the blood. The stem cells are then frozen in liquid nitrogen at -112 degrees F until they are needed for the transplant. This is the easy part, the hard part is what comes next.

The actual transplant starts with a massive dose of Melphalan, a chemotherapy drug. This kills off your bone marrow and if all goes well, a very large number of Myeloma cells. It also wipes out your immune system . . . completely. I thought I understood what that last bit meant, but for some reason it didn't really sink in until they told me I would have to re-do all of my childhood immunizations. Two days after the chemo is day '0'. Day '0' is when they defrost your stem cells and put them back in again. These stem cells then slowly rebuild your bone marrow over the next couple of weeks. I will likely do this as an inpatient, spending 2-3 weeks in the hospital. Some people actually do this as an outpatient. I can't imagine walking out of the hospital and going back to a hotel room or rented apartment near the hospital with NO immune system! This is the fun time, with the normal side effects of massive doses of chemo . . puking, pooping, hair falling out and generally feeling like death warmed over.

After being released from the hospital, we then have to stay within 15 minutes of the hospital for a further two weeks. We because you have to have a full time caregiver who can take care of you 24 hours a day. You also need a back up caregiver in case caregiver one gets the sniffles. If all goes well, I can then go home, see my dogs (you can't be with your pets for at least a month) and basically spend a month or two trying to regain my strength. This isn't a cure, it is just a way to buy a little more time. For some it is only months, for others it can be years. As I am a high risk patient due to my damaged chromosomes, I may not get the many years some do. At Moffitt Cancer Center, they tell me that only 2 people out of 100 die from this procedure . . . a statistic I try not to think about. After the transplant, I will still have to be on some type of maintenance drug, such as Revlimid, the expensive drug I mentioned above, for the rest of my life, however long that may be.

The Future

What does all of this mean for Smith Marine Design? It means there will be big changes. As I can no longer work steadily due to all of the doctor appointments and side effects from treatment, I have recently had to go on disability. I can no longer accept commissions for custom or production boats. I have a couple of smaller projects, and one large one, to finish up and then I will devote what time I can to creating stock plans. I can do these at my own pace and not disappoint a client who may want his boat finished in his lifetime. I don't really earn much money, if any, from stock plans, so I shouldn't run afoul of the Social Security people. I also should have the strength to still support the stock plan builders by email and phone. You just may have to be patient with me if you write or call on a bad day. The website will have to be re-written to reflect the changes, it is long overdue for a facelift anyway!

A lot has happened over the last ten years. As with most people, I wish I could have accomplished more. If the economy had been better, I probably would have designed quite a few more production boats, which is actually what I thought I would be doing when I started this venture. Boy was I wrong! I actually really enjoy doing the small stock plans, although I probably obsess over them more than I should. I guess I should be grateful that I will still be able to do something I enjoy for a while longer. Many people spend their whole working lives in jobs they hate, I got to do the job I dreamed of when I was young. How many people can say that? If I don't write another update before Christmas, please have a merry one. I'll be spending mine doped up on steroids. So, to all those cancer patients similarly afflicted, have a Merry Dexmas!

Timm Smith
November 27, 2013
Revised, ever so slightly, December 11, 2013