Good news and bad hose

The news from our visit to the Mayo Clinic last week was very good, indeed. The myeloma is still present in measurable amounts, but it is not resurgent--all of the pertinent numbers are still stable, which means that I am still in remission. No further treatment--other than quarterly monitoring--is necessary at this time. The blood clot is gone, but best practice is to keep wearing those stylish support stockings, so I will continue to be a fashion plate (more like a platter) with those hose. I will continue to take coumadin indefinitely to keep the INR at targeted levels, and I will have to return to Mayo later this Fall to have the vena cava filter removed (since there is no longer a clot, there is no longer a need to have a last line of defense in case it breaks loose). Minor surgery, that. Actually, right now, my biggest medical problem is high cholesterol--which in the great scheme of things, doesn't seem so bad anymore. Oatmeal, anyone?

My friends, the old adage that "no news is good news" certainly holds true for me. I have been back at work (half time) since the first of June, and things have been going quite well. Other than the fact that my large bones have been permanently compromised (there goes any chance of winning Olympic Weightlifting gold) and muscles in my legs are still stiff (ditto my chance for Olympic gymnastic glory), I'm doing very well. Stamina is not quite what it used to be, but it is getting better. But I feel generally quite good, have (unfortunately) a strong appetite, and have pretty much gotten back into the rythm of my old life. Come mid-September, though, there will be the big hurdle. Florence and I return to the Mayo Clinic where I will undergo tests to determine whether I am still in remission--or if the myeloma is becoming resurgent. I feel so well that I can't imagine that we will get anything but good news. If the news is not so good, we'll learn what can be done to make it better, for the docs still have a lot of arrows in their quivers. So come September 13-15, say a little prayer for good outcomes--or a big one, if you like!

He's Back--and He's Healthy!

Kind readers, when I started this blog (with the indispensable help of Ashima Saigal), I was so sick that I sometimes felt as if I would have to get better in order to die. Now, with the indispensable help of Mayo Clinic physicians and nurses, my incredible wife Florence, and the dear friends and relatives who supported us by cooking, cleaning, visiting, praying, and sending cards that were hilarious, if often of dubious taste, I am feeling remarkably better. I'll always have lifting restrictions due to my bones having been compromised, but this mainly means that I won't be able to help my kids move furniture into dorm rooms (too bad for them, quite a good deal for me), and I don't have the endurance I once had. but otherwise I am my old self again, or at least a reasonable facsimile therof. I have improved to such an extent that, as of today, I returned to work, on a half-time basis, at the Dorothy A. Johnson Center for Philanthropy and Nonprofit Leadership of Grand Valley State University. If you are reading this post, I can't thank you enough for all that your support and encouragement has meant to us. You have helped us return to a normal life, at least until September, when next I will be checked at Mayo for any signs of the myeloma becoming resurgent. But we are taking the optimistic view that my remission will last for many years. I am taking on the personal goal of living to see the Detroit Lions win the Super Bowl--which means that I intend to live for centuries!

The mission is remission

Ninety days ago, I had my stem cell transplant. Every day since has pointed toward today, when the follow-up testing would determine if I am in remission, or if the myeloma is still active. For the past two days, I have undergone extensive testing, including a bone marrow biopsy and a PET scan, to determine the outcomes of the chemotherapy and stem cell transplant. This afternoon, we got the results, and I'm happy to say that they are very positive. It is not a Complete Response, in which none of the markers of myeloma can be detected, but it is a "Very Good Partial Response," which is pretty darned good. Every marker of the disease has been drastically reduced. Total proteins from 17,000 mg to 99 mg; monoclonal proteins from 15,000 mg to 45 mg; hemoglobin back into the normal range for the first time in a year; less than 5% bone marrow involvement; no detectable circulating cells. The doctors think that it is possible that the markers will continue to decline for several more months. All of this means that I am in remission, and my unmutated chromosomal makeup suggests that it should be durable, which is defined as two or more years. The median remission lasts two years, but this number is dragged down by patients with mutated chromosomes, who tend to have very short remissions. I am confident that my remission will last much longer than that. No further treatment is necessary at this time; just ongoing monitoring on a quarterly basis. Even when the myeloma comes back, as it inevitably will if I live long enough, I have another stem cell transplant in the bank, and there are a number of promising therapies that are in testing stages right now that will by then be available to beat the disease back into remission once more. I now view multiple myeloma as a chronic condition that can be managed, not as an acute disease. This should allow me to dance at my kids' weddings and spoil their children for many years to come! I am so grateful to the physicians here at the Clinic for the superb care they have provided. I am also thankful for Florence, who has been my everything during this long ordeal. Finally, I will always be filled with gratitude to our friends, relatives, and followers of this blog for your help, your prayers, your support, and your all-around indispensableness! All of that good karma is not only appreciated--it worked!

A Week of Testing Ahead

May 11 is not only the day after Mother's Day, it is the day that we return to the Mayo Clinic for my 100 day testing. In truth, it's little less than 100 days post-transplant, but it's close enough to do the definitive testing that will determine my status. The possibilities are full remission, partial remission, and active disease. I feel so much better than I did immediately post-transplant that I simply cannot imagine that the myeloma is still active. I'm being optimistic, and predicting that the verdict will be a ful remission. If so, there is likely to be minimal follow-up. If the remission is partial, there is likely to be follow-up chemotherapy. If the disease is still active, then there will be more chemo, followed probably by a second stem cell transplant. I REALLY don't want to go through another stem cell transplant, so I would appreciate it if, next week, you would send my way any prayers, positive karma, and good ju-ju you may have to spare. I'll be sure to share the news, whether good, bad, or ugly, with all of you via this blog, so watch for it toward the end of th next week. In the meantime, fingers crossed, please!

My moving experience

Do you recall the old Charles Atlas ads, in which the "bully of the beach" kicks sand in the face of the 98 pound weakling, who then gambles a 4-cent stamp, takes the Charles Atlas course and punches out the bully? Alas, at the moment, I am the weakling, albeit a 230 weakling, before he took the Atlas course. The last couple of days, I've been moving my library from scattered points around the house to a newly-completed, consolidated library space. Well, maybe "moving" is a bit of an overstatement. It's more like grabbing a small handful of books, taking a few steps, getting out of breath, sitting down and resting. Needless to say, the vast majority of the books still have not been moved. It doesn't help that the docs have placed lifting restrictions on me--the bones that were compromised by lesions heal, but they don't come back with their old strength--so officially, I'm not supposed to lift more than 20 pounds. I'm also discovering how quickly 52 year-olds get out of shape when they don't exercise for a few months. My legs in particular are really stiff from the exercise I've gotten over the past couple of days. My take-away from all of this is that I should not consider a new career with Two Men and a Truck any time soon! The key here is patience. A month ago, I couldn't have dreamed of moving any books at all. A month from now, I will probably be able to tote books with much less stop-and-gasp action. And, a month from now, I return to the Mayo Clinic for the thorough testing that will tell us whether I am in remission or--well, let's not contemplate that possibility. In the meantime, there are books to move--does anyone out there have a few spare oxygen canisters I could use?

Recovery and Blah Writing

It is getting tougher to write a self-respecting blog about an illness when you are on the way to recovering from that illness. To be sure, I still get fatigued far too easily, and I continue to have trouble getting to sleep at night, and my back still hurts when I bend over, but overall, I'm slowly getting better. Now where's the excitement in that? I've actually reached the point at which I no longer need a nap or two to get through the day. I still need to lie down 2-3 times in order to give my back a rest, but that is less than I used to require. We also finally have the protime level of my blood where it ought to be (actually at last measurement, it was slightly higher than it should be--too "thin"--but that is better than the weeks in which it remained stubbornly low). It's also great that Florence no longer has to give me inoculations of anticoagulants, a fact for which both Florence and my stomach (the injection site) are grateful. So the order of the day is to exercise, build stamina, and get back into a normal sleep pattern. Pretty mundane stuff for the "Stem Cell Stud," but I guess recovery is inherently less dramatic than disease. If any follower of this blog has an idea about how I can make this story of recovery a more compelling read, please let me know!