Announcement #1

October 11, 2008

Dear Family and Friends:

Over the past three months, I have encountered a series of seemingly minor, apparently unrelated health issues—a low hemoglobin count on an annual physical, broken ribs while roughhousing with Andrew and hauling luggage, a persistently sore back after moving Anita and Andrew back to school. After I flunked a second blood test for hemoglobin levels, my family doctor ordered more extensive testing, and the results, unfortunately, have tied these disparate symptoms to a single, and serious, cause: multiple myeloma (MM).

MM is a cancer of the plasma cell, an important part of the immune system that produces the immunoglobulins (antibodies) that fight infection and diseases. MM is characterized by excessive numbers of abnormal plasma cells in the bone marrow, overproduction of abnormal antibodies and underproduction of normal ones. These problems tend to cause the patient to become anemic (hence my low hemoglobin scores) and also to suffer from diffuse osteoporosis and lesions in larger bones (hence my broken ribs and sore back). MM also causes a host of other problems, such as renal failure, that as of yet, thank God, I have not experienced.

The bad news is that MM is incurable. The good news is that it is treatable, and that many patients live for years (our research has turned up one person still with us who was first diagnosed in 1983), in remission with proper therapies, exercise, and diet. Even better news is that my diagnosis came relatively early, which increases the odds of successful treatment. And I am a highly motivated patient, for 2009 will mark Florence’s and my 30th wedding anniversary, as well as Anita’s and Andrew’s high school graduations. I have every intention of being around for many future anniversaries, graduations, holidays, and—down the road—marriages and grandbabies!

Thanks to the timely and persistent intervention of our dear friend, Dr. Dan Stewart, Florence and I were able to go to the Mayo Clinic October 1 through 7, where I was tested in every imaginable way (and a couple which were beyond my imagination)! The results, which as of this writing we have just received, are extremely encouraging. We have learned that there are two factors that are extremely important in treating MM: how aggressive the subtype of MM is, and how the patient’s own cytogenetics affects the therapies.

The Mayo tests suggest that I have had MM for a considerable time: at least for several months, possibly for years. However, the MM cells have been proliferating outside of my bone marrow only very slowly. The plasma cell labeling index, which is the main measurement of proliferation, is 0—as low as it can be. I have only one lesion (the one in my left pelvis that has been causing my back pain), when the more typical finding would be lesions in several bones, giving them a “Swiss cheese” appearance. All of this means that I have an “indolent” form of MM—one that is not very aggressive, and that can usually be treated very effectively.

The Mayo tests also were very encouraging about my cytogenetics. Each of us has individual chromosomal differences that affect the way in which we metabolize medicines and respond to therapies. This is why one cancer patient may respond beautifully to a given therapy, while another one is not helped by it at all. It turns out that I have no cytogenetic high risk factors for the MM therapies, and Mayo rates me as a “Good Prognosis” to reach a stable remission.

This is all great news, but none of it is a guarantee that I will be able to tolerate the therapies, or even that they will work if I can tolerate them. I am in constant pain from the lesion in my hip, which affects my ability to walk. My ribs are extremely fragile, and due to the anemia, I don’t have a lot of energy, or stamina. All of this can be reversed by the therapies that Mayo has laid out, but I know that I have a long, hard road ahead of me.

The first step down that road begins on Tuesday of this coming week with daily radiation therapy focused on the lesion (formally called a plasmcytoma) in my left pelvis. Fifteen radiation treatments will clear the plasmacytoma of myeloma cells, and reduce the pain, which will leave the site free to heal.

The second step begins later this coming week with my chemotherapy regimen. The agents will be Revlimid (a derivative of thalidomide, the notorious drug that caused so many birth defects in the 1950s), and Dexamethasone, a steroid. The docs expect that this combination—all taken in pill form, by the way—will significantly suppress the myeloma cells, and possibly even (after four to five courses of 3 weeks on, 1 week off), drive my MM into remission. I will return to Mayo after every course—once a month—to get checked and also to get an infusion of bisphophonate, which will help to rebuild my pelvis, my ribs, and any other bones weakened by MM.

The third step will be the most important (and most dangerous) one. While I am on the Revlimid/Dexamethasone chemo regimen, the doctors at Mayo will stimulate the production of stem cells from my bone marrow. These cells will be capable of becoming, after they “grow up,” any of the crucial blood cells: hemoglobin (to carry oxygen), white blood cells (to fight infections), and platelets (to promote clotting). These stem cells are also capable of re-forming my entire immune system. The docs will collect these stem cells and freeze them for later use.

Then, after the Revlimid/Dexamethasone regimen has cut the MM down to size, I will return to Mayo, where they will administer an extremely powerful chemotherapy agent (Melphalan), which will destroy virtually all of the MM cells in my body. Unfortunately, it is impossible destroy that many MM cells without also destroying most of the healthy bone marrow cells that comprise my immune system. That is where the stem cells come in—they will be thawed, and infused into me, where they will migrate to my bone marrow and develop into a new immune system. Since these are my own cells, there is no danger of my rejecting them. However, there is a significant danger of contracting outside infections while my new immune system is immature and growing into full effectiveness (it will take at least 100 days after the transplant for maturity to be achieved).

After the transplant successfully grows to maturity, I should be in a stable remission that could last for many years. At this point, however, it is impossible to cure MM, so eventually, the remission will end, and MM will come back. Then, the process of chemotherapy and stem cell transplantation will begin all over again, hopefully to be followed by another stable remission of many years duration. By then, it is devoutly to be hoped that stem cell research will have progressed to the point of having found a cure for MM. You can give that vitally important process a jump start by voting “yes” for
Proposition 2 on this November’s Michigan ballot.

These therapies, while effective, have debilitating and potentially lethal side effects. It is imperative to dedicate oneself entirely to adhering to the treatment regimen if it is to be safe and effective. Therefore, I have requested from, and have been granted by my employer, Grand Valley State University, a special work status that will allow me to continue to make useful contributions to the Johnson Center for Philanthropy on a very flexible basis. I am very grateful to Dr. Kathy Agard, Executive Director of the Johnson Center, and Dr. Gayle Davis, the Provost of the University, for working out this creative plan that will allow me to heal while simultaneously helping to advance the Johnson Center’s mission.

Thanks to the incredible intervention of our wonderful friend, Dr. Dan Stewart, I was not only diagnosed expeditiously, but also got an appointment, in record time, with Dr. Greg Nowakowski, a senior hematologist at the Mayo Clinic, so I am already getting the best care on the planet. Dan has also arranged for me to be cared for locally by another top-of-the-line hematologist, Dr. Radha Vemuri, of the West Michigan Cancer Center. We’ve always known that Dan is a superb surgeon, but we never quite realized how deft he is a cutting through paperwork and accelerating bureaucratic systems to make good things happen. We are immensely grateful to him for literally cutting weeks out of the process. To say that he is a lifesaver is both literally true and a gross understatement.

As I embark on this new journey, I am immensely heartened by the knowledge that so many magnificent people are supporting me from all directions. Florence, of course, has been all things to me since the diagnosis: whether my need at the moment was for a fountain of unconditional love, a comedian, a strategic planner, a drill sergeant, or a motivational speaker, she has fulfilled each need with loving élan. Our children, Carly, Anita, Andrew and Mariann, have stepped up to new levels of maturity and helpfulness. Our parents, Caroline Orosz and Jerry and Betty Mason, have helped in ways that only parents can. Amy Upjohn and Brad VandenBerg have been all over our problems—as Brad would say—“like a cheap suit!” Don and Ann Parfet, Tom and Anne Reis, and Frank Taylor and Barry Schroeder have provided a veritable cornucopia of mouthwatering comestibles that have made it easy to follow doctor’s orders to maintain my weight going into chemotherapy. Martha and Henry Upjohn have been everywhere at once, meeting needs as they arise. Our dear friends John and Karen Cooper and Bob and Patti Huiskamp have all atoned for their Republican political proclivities to be helpful when needed. Florence’s Ladies Who Lunch group has temporarily reconstituted itself as Ladies Who Support Sick Friends. John and Sveri May, and Pam Hawk have all come through for us repeatedly. Other family members and close friends have rallied around us with loving care and tenderness. You truly cannot understand the dimensions of your blessings until you’ve had to deal with the depths of an unexpected blow.

During the coming months, I know that you will shower me with care, concern and support, and I will happily accept every bit of it! My plea to you, however, is to make sure that my primary caregivers get their times of respite and release. I’m asking you to especially watch Florence, and if necessary to drag her bodily away for an occasional break and focus on her needs. We can’t allow her to run herself ragged caring for me.

Speaking of me—long my favorite subject—I am determined, with your help, to beat this disease, and become one of the 25-year survivors. The combination of cutting-edge medical care, unlimited loving support from fantastic family and friends, and my sheer cussedness, I am confident, will allow me to spend many future years tormenting our children’s spouses and spoiling our grandchildren beyond all hope of correction.

In closing, I ask you to do everything you can to advance the life-saving therapies coming from stem cell research, including voting for Proposition 2 on November 4. I will gratefully accept all gifts you may wish to send my way: your prayers, your positive karma, your healing energy, your contraband baked goods, heck, even your small, unmarked bills! It’s great to have you on our team!

We will keep you posted as my treatment begins and progresses.

With love and hope,

Joel