April 26, 2011 - Mark Twain Lives!

I’m starting to feel a little bit like Mark Twain. One of his most famous quotes was "The reports of my death are greatly exaggerated." There has been a great deal of discussion if those were the exact words that he used, but the fact remains that he made a heck of a comeback from what many thought was his demise. There haven’t been any reports of my death, but it certainly crossed my mind a few times after my last blood test.

I’m not going to try to kid anyone on my thoughts after that test, but no matter how hard you try to stay positive, it sometimes gets tough when what you have worked hard for seems out of reach. That is the way I felt last month when I saw my blood work up and realized that remission was indeed gone and I was bound for more chemotherapy, probably for the rest of my life. But at the same time, the fighter in me gave my pessimistic side a swift kick in the head and Yogi Berra’s famous quote came to mind, “It ain’t over ‘til its over.”

The optimist in me found its way back to the top and I realized that no matter what, I needed to take every day as a gift from God and just continue to move forward. With that in mind, I went through a series of tests at the Mayo with the intent things had not gone too haywire and I would be starting some brand of chemo next week.

The day went pretty well considering I had had some level of mishap with just about all of the tests that I would be part of. The first was the 24 hour urine test that, if you remember, I had a rather embarrassing moment when I turned it in once after not sealing it properly and the container was drenched in you know what. This time it went off without a hitch as I triple checked how I screwed on the lid. I did forget it in the car, but Julia was kind enough to make the trek out to the parking lot to get it while I waited for my blood test.

The last time I had a blood test I almost passed out. The technician (and I use that term lightly) seemed to be digging for gold instead of actually placing the needle in the vein. I can handle that for a bit, but this seemed like it lasted the entire gold rush. This time, it went in the first time and I was out almost as fast as it took me to sit down.

The next test was the bone marrow biopsy. The last time it went well but I ended up flirting with the gay nurse while I laid there half naked. Amazing what drugs will make you do. This time it was in and out and I got to keep all of my clothes on. I was a little sore after, but that is the price you have to pay for progress.

The last test was the easiest which was the full body scan. I have never had a problem with this test other than it is about 30 x-rays and I am always afraid of glowing in the dark at night.

So other than the fact that I was rather sleepy, it was a good day. I knew that I would get the blood test back today, so I would have a good feeling of where I was even before the bone marrow biopsy was back. That was when the real surprise came and I started to feel like Mark Twain. Instead of continuing in the downward spiral that I had been for the last few months, I actually showed improvement.

Because the cancer was up the last few months, my kidneys were starting to throw a pity party for themselves and my creatinine went from 2.2 to 2.6 as the cancer number had risen from 5.6 to 14.0. As Dr, Hogan told me last week, that wasn’t the end of the world, but it was important that we kept an eye on it. It is my own personal opinion that as long as my kidneys keep working, I will have a much longer shelf life.

The blood test showed my creatinine back to 2.2. The cancer dropped back to 13.2 from 14.0 and most of the other issues came back down into the normal range. My bone scan showed no appreciable decline since the test I had in December, 2009.

I have no idea what this means in the long run but as my daddy used to say, “It’s better than getting hit with a stick.” Will it continue? I have no idea. But what it does mean is that I can put off chemotherapy for another month. Now we are looking at another blood test at the end of May and a decision will be made at that time. Who knows, maybe I have another minor miracle in me!

Keep up the cards and prayers! You have no idea how much they are appreciated.

April 11, 2011 - The Vacation Is Over -- Time to Get Back to Work

June 4, 2009 was the start of a new life for me as I received a stem cell transplant. For the next 22 months I was afforded the opportunity to live my life, although not free and clear of cancer, but without major worry about my condition. It truly was a vacation from the disease as I did not have to do anything but show up for my blood tests. I was able to put my feet up and, in a way, relax at the beach. It was 22 months that went so fast, I felt normal. As with all vacations, mine has come to an end. It was confirmed last week that I am no longer in “remission.”

I look at this not with dread, but with a renewed sense of determination. This is not something that was unexpected. As like all other Multiple Myeloma sufferers, I knew it would again rear its ugly head. It just happened a little sooner that I would have liked. However, that 22 months gave me an opportunity to get pretty healthy and ready to begin the fight anew. If you compare where I am today versus where I was when this started or even where I was before the transplant, there is no comparison. This stupid disease has no idea what I have planned.

In the past, I did the things I should do such as taking supplements, vitamins, adding some exercise to my daily regimen and eating my vegetables. That all will continue and I plan on taking it up a notch. I will become even more diligent in my workouts and take a closer look at what I am eating. My guess is that it can’t hurt. In addition, we will put together a full-frontal attack on the disease using the best drugs available.

Dr. Mikhael laid out three different options:

1) Another stem cell transplant. I have said all along that I would happily do another one of these if I could get an extra two years like I have had. The only problem is that typically the second one does not last as long as the first one. I might only get a year out of the second one. As it stands, I am going to keep this one in my hip pocket just in case we get to the point that nothing else works.

2) A combination of Velcade (which was the main chemotherapy that I had when all of the is first started), cyclophosphamide (or cytoxan) and dexamethasone. Velcade seemed to work well for me, but as soon as I got off of it, the cancer had a field day, almost going back to there it was when it was discovered in just five weeks. Because of that, I will likely pass on this possibility for now.

3) Join in a clinical trial. This trial was put together by Dr. Mikhael and has now gone nation wide. It will include Revlimid and dexamethasone. Revlimid is one of the more popular drugs that is used to fight MM. Dexamethasone is a steroid that is also used as a direct chemotherapeutic agent. At this point, I would have to say that this is the leader in the clubhouse. After doing a little research, this offers the most promise at this time. The article below offers some good news surrounding the use of this combination including some participants actually seeing an improvement in kidney function

http://www.myelomabeacon.com/news/2010/03/11/dose-adjusted-revlimid-dexamethasone-combination-is-safe-and-effective-in-multiple-myeloma-patients-with-reduced-kidney-function-study-suggests/

After we receive the results from next week’s tests, we should have a better idea which process makes the most sense.

Needless to say, this was tough news to swallow. The body can be deceiving. The fact that I feel good right now is such a fooler. If I didn’t know better, I would say that the blood work was botched and I am perfectly fine. But just know that I will be going at this with 110% effort as Pete Rose used to say. I am not going to let this disease beat me. I will NEVER give up.

My vacation is over and I’m ready to go back to work.