a professor in Kazakhstan, a wonderful gift to me from my student and good friend, Ainur Nurtai. As you can see, with its rich golden embroidery and bishop's miter-inspired cap, it will make a striking impression during the next academic procession in which I take part! Thanks, Ainur, for making me the best-dressed professor every time I process!Wednesday, December 31, 2008
Joel in Graduation Robe
Here I am wearing the typical academic regalia of 
a professor in Kazakhstan, a wonderful gift to me from my student and good friend, Ainur Nurtai. As you can see, with its rich golden embroidery and bishop's miter-inspired cap, it will make a striking impression during the next academic procession in which I take part! Thanks, Ainur, for making me the best-dressed professor every time I process!
a professor in Kazakhstan, a wonderful gift to me from my student and good friend, Ainur Nurtai. As you can see, with its rich golden embroidery and bishop's miter-inspired cap, it will make a striking impression during the next academic procession in which I take part! Thanks, Ainur, for making me the best-dressed professor every time I process!
Friday, December 5, 2008
Progress to Report in the Progress Report
When last I reported on my condition, I was breaking up with my constant companion of 6 weeks, Vicodin, and was in a world of hurt because of it. Well, the good news is that we are now at the end of the second round of velcade chemotherapy, and the chemo is reducing the pain associated with the myeloma. The pain is still there, I can assure you, but it is getting more bearable as the chemo progresses. I am now able to do things I haven't in quite some time, such as drive a car, at least for short distances. This is an improvement in my life; as to whether it is an improvement in the quality of life in Kalamazoo, I'll leave it to wiser heads to decide. I'm still woefully short on stamina, and as out of shape as the early 70s Elvis, but I am at least making tentative forays back into the land of the living, and that feels good. What feels especially good is that Florence no longer has to spend every waking moment caring for me, which gives her the opportunity to get some of her life back, too. Round three of velcade therapy begains next week, and I'm asking Santa for a pain-free Christmas. Thanks to all of you who have been writing, e-mailing, and sending the occasional cuneiform clay tablet. You are all wonderful, thoughtful, and much appreciated!
Thursday, November 20, 2008
Announcement #5, November 20, 2008
Just a short announcement for today folks. Dr. Vemuri, my Kalamazoo hematologist, has decided that it would be best if I were to throttle back on the narcotic painkillers that I am taking to deal with the array of bone and muscular pains that come with multiple myeloma. These pain killers, especially Vicodin, have become very close personal friends of mine over the past six weeks, and I am loath to see them go. Nonetheless, I have begun to dial down on the Vicodin, replacing it with alternating doses of Extra Stength Tylenol and Ibuprofen. So far, this has meant more pain to deal with, but not an unbearable amount. Florence might tell you that the "bear" has been unleashed in my temperament, but I'm sure she's just kidding. More on this new adventure to share soon. Tomorrow will mark the halfway point of my second round of velcade therapy, and hopefully the increasing success of the chemo will reduce the pain, thus making this narcotics-weaning process easier. I'll close by thanking you for the hundreds of cards, letters and notes--they lift my spirits and often make me chuckle at the wit, and appreciate the wisdom, of my friends and family.
Just a short announcement for today folks. Dr. Vemuri, my Kalamazoo hematologist, has decided that it would be best if I were to throttle back on the narcotic painkillers that I am taking to deal with the array of bone and muscular pains that come with multiple myeloma. These pain killers, especially Vicodin, have become very close personal friends of mine over the past six weeks, and I am loath to see them go. Nonetheless, I have begun to dial down on the Vicodin, replacing it with alternating doses of Extra Stength Tylenol and Ibuprofen. So far, this has meant more pain to deal with, but not an unbearable amount. Florence might tell you that the "bear" has been unleashed in my temperament, but I'm sure she's just kidding. More on this new adventure to share soon. Tomorrow will mark the halfway point of my second round of velcade therapy, and hopefully the increasing success of the chemo will reduce the pain, thus making this narcotics-weaning process easier. I'll close by thanking you for the hundreds of cards, letters and notes--they lift my spirits and often make me chuckle at the wit, and appreciate the wisdom, of my friends and family.
Wednesday, November 19, 2008
Announcement #3
November 1, 2008
Dear Friends:
In my last update, I said I would try to share some more positive news the next time around. Well, I can mostly deliver on that promise. The week did not start auspiciously; however, for on Sunday, October 26 I began to experience an array of disturbing symptoms. I became disoriented, had difficulty in speaking and concentrating, and alternated between chills and overheating. It turned out that I had been in so much pain for so long, and had taken so many pain killers for so long, that I was simply overdosed. The docs cut my pain med dosages, and all of my nasty disorientation symptoms disappeared—but then a lot more pain appeared.
However, the good news is that my new chemotherapy regimen of Velcade is so far being tolerated well—at least after applications on Monday and Thursday. It is intravenously delivered, which is a bummer, but at least so far it hasn’t caused any adverse reactions.
It also seems to working, since one of the benefits of it is pain reduction—and I have gradually experienced lower pain levels over the past few days. The plan going forward is for another week of chemotherapy (the radiation treatments have now been completed), and the hope is that I will continue to tolerate it all as well, and that the pain will continue to be reduced by the Velcade. Then, next week, we go back to the Mayo Clinic for a checkup, which will give us a firm benchmark on progress.
My feeling is that I have taken a few steps—but a few steps only—on a long road back. It sure would be nice to go through a day without being in a boatload of pain—but hopefully, that’s where I’m headed. Many thanks to those of you who have taken the time and effort to call and write me—that really means a lot. I’ll keep you posted as my treatment progresses.
Warm regards,
Joel
Dear Friends:
In my last update, I said I would try to share some more positive news the next time around. Well, I can mostly deliver on that promise. The week did not start auspiciously; however, for on Sunday, October 26 I began to experience an array of disturbing symptoms. I became disoriented, had difficulty in speaking and concentrating, and alternated between chills and overheating. It turned out that I had been in so much pain for so long, and had taken so many pain killers for so long, that I was simply overdosed. The docs cut my pain med dosages, and all of my nasty disorientation symptoms disappeared—but then a lot more pain appeared.
However, the good news is that my new chemotherapy regimen of Velcade is so far being tolerated well—at least after applications on Monday and Thursday. It is intravenously delivered, which is a bummer, but at least so far it hasn’t caused any adverse reactions.
It also seems to working, since one of the benefits of it is pain reduction—and I have gradually experienced lower pain levels over the past few days. The plan going forward is for another week of chemotherapy (the radiation treatments have now been completed), and the hope is that I will continue to tolerate it all as well, and that the pain will continue to be reduced by the Velcade. Then, next week, we go back to the Mayo Clinic for a checkup, which will give us a firm benchmark on progress.
My feeling is that I have taken a few steps—but a few steps only—on a long road back. It sure would be nice to go through a day without being in a boatload of pain—but hopefully, that’s where I’m headed. Many thanks to those of you who have taken the time and effort to call and write me—that really means a lot. I’ll keep you posted as my treatment progresses.
Warm regards,
Joel
Announcement #2
October 17, 2008
-and-
October 22, 2008
Dear Family and Friends:
The first five paragraphs of this update were written on October 17, when, other than persistent pain, the way forward looked pretty straightforward, and quite positive. The remaining paragraphs were written on October 22, after that way forward suddenly changed without warning. We are still looking forward to a positive path—but it will be a different one, and now we know that this one, too, could change at a moment’s notice.
The October 17 Report: Mostly good news from the Painsville—not that pleasant city in the battleground state of Ohio—but rather my unwilling abode over the past few days. The bad news all centers on pain. An MRI yesterday revealed why I have been contending with so much of it—my fifth lumbar vertebra, thanks to the myeloma, has essentially collapsed into a compression fracture, which, I can assure you, hurts almost as much as the prospect of a McCain Administration! On Monday afternoon, I will be undergoing a vertebroplasty to rebuild the vertebra so that it can once again support the weight of my spinal column. The docs assure me that the pain relief will be almost immediate. I would drink to that, except that I have to be a teetotaler while on Oxycontin and Vicodin!
The good news has been abundant, however, and for that, we are very grateful. On Tuesday the 14th, I began radiation treatments on both hips and on the lesion in my pelvis, and after a slight early reaction, I have been tolerating this treatment well. As a result, I am already starting to feel some pain relief in these areas.
Most importantly, on the evening of Wednesday the 15th, I began my chemotherapy regimen of Revilimid and Dexamethasone, and I have been tolerating these two powerful agents extremely well. If they do their jobs, the tide of the battle will be turned significantly in my favor. What an incredible irony that the drug that broke so many hearts in the 1950s—thalidomide—will be, in its new incarnation of Revlimid, the means of saving my life!
Still to come is significant intervention to rebuild the weakened bones in my ribs and hips—that won’t be advisable until the chemotherapy reduces the myeloma load on my system—with the first treatment scheduled for my return to Mayo in mid-November. In the meantime, I’m dealing with a fourth cracked rib, but the painkillers have made this an easier task than I had with the first three.
So, by this time next week, I expect to be in significantly less pain, and hope to have the various markers by which they measure the progress (or regress) of MM moving in the right direction. Florence has been doing an awe-inspiring job of taking care of me—everything from managing my medical care to putting on my socks in the morning. Family and friends have rallied around with great food, thoughtful notes, generous infusions of mirth, and heartfelt expressions of prayers and good wishes. You’ve all combined to hold me up when sheer pain had me reeling. It’s all more than I could have expected, certainly more than I deserve, but not more than I can appreciate, nor more than I will remember with a full heart.
The October 22 Report: On the morning of Friday, October 17, my scalp began to itch. By that evening, my skin on my face was turning red and feeling warm. That evening, Florence took me to the Borgess Hospital emergency room, which gave me Benadryl, and sent me home. By the morning of Saturday, October 18, my head was doing an alarming imitation of the local jack-o-lanterns. We feared that I might be reacting to my pain medication, so we cut that out, too. I was now in full-blown reaction to at least one of the drugs I was taking, and the fifth lumbar vertebra, with no pain killers to mask it, was reminiscent of a Bowie knife twisting maliciously in my lower back.
By Sunday morning, October 19, it was back to Borgess, where a wonderful team of doctors, led by our close friend, Dr. Dan Stewart, and including Dr. Radha Vemuri, my Hematologist at the West Michigan Cancer Center, and Dr. Greg Nowakowski, my Hematologist at the Mayo Clinic, got the drug reaction under control with the use of steroids, and found a pain reliever that removed the figurative Bowie knife from my back. On Monday, October 20, Dr, Bozarth, an Interventional Radiologist, successfully performed the verteboplasty, thus rebuilding lower lumbar vertebra. While it is still tender from the surgery, the pain of the former compression fracture has been effectively relieved, allowing me to walk normally again, and someday soon, to be able to bend over once again. Obviously, this is a great development!
Our team of Drs. Stewart Vemuri, and Nowakowski, however, identified a much less happy development: the cause of the drug reaction. They eliminated the initial suspects one-by-one: the pain relievers, the aspirin, and the first set of steroids. The culprit, unfortunately, turned out to be Revlimid, the chemotherapy agent of choice. Florence has since discovered that, according to research conducted by the manufacturer; of the 37,000 people who have been prescribed Revilimid 11 have had reactions. That’s right—I am the twelfth person worldwide to wash out of a Revlimid regimen. I guess I have always believed that I am special, but here is hard proof!
We now go to the second-best chemo treatment, Velcade, which unfortunately has to be administered by infusion, instead of by pill. We hope that this will work, but we are mindful that, for two days, I seemed to be handling the Revilimid well, too—until it hit me like an angry rhino. If all goes well, therefore, we will start the infusion of Velcade at the West Michigan Cancer Center on Monday, October 27, and if I can tolerate it, the first cycle will come to an end in mid-November, just in time for our return visit to the Mayo Clinic.
So, with our continuing gratitude to our marvelous doctors, nurses and other medical professionals, continuing thankfulness to our friends who feed us both spiritually and literally, and with my personal awe at Florence’s boundless loving care for me, I’ll try to keep future news reports more positive from here on out.
With love,
Joel
-and-
October 22, 2008
Dear Family and Friends:
The first five paragraphs of this update were written on October 17, when, other than persistent pain, the way forward looked pretty straightforward, and quite positive. The remaining paragraphs were written on October 22, after that way forward suddenly changed without warning. We are still looking forward to a positive path—but it will be a different one, and now we know that this one, too, could change at a moment’s notice.
The October 17 Report: Mostly good news from the Painsville—not that pleasant city in the battleground state of Ohio—but rather my unwilling abode over the past few days. The bad news all centers on pain. An MRI yesterday revealed why I have been contending with so much of it—my fifth lumbar vertebra, thanks to the myeloma, has essentially collapsed into a compression fracture, which, I can assure you, hurts almost as much as the prospect of a McCain Administration! On Monday afternoon, I will be undergoing a vertebroplasty to rebuild the vertebra so that it can once again support the weight of my spinal column. The docs assure me that the pain relief will be almost immediate. I would drink to that, except that I have to be a teetotaler while on Oxycontin and Vicodin!
The good news has been abundant, however, and for that, we are very grateful. On Tuesday the 14th, I began radiation treatments on both hips and on the lesion in my pelvis, and after a slight early reaction, I have been tolerating this treatment well. As a result, I am already starting to feel some pain relief in these areas.
Most importantly, on the evening of Wednesday the 15th, I began my chemotherapy regimen of Revilimid and Dexamethasone, and I have been tolerating these two powerful agents extremely well. If they do their jobs, the tide of the battle will be turned significantly in my favor. What an incredible irony that the drug that broke so many hearts in the 1950s—thalidomide—will be, in its new incarnation of Revlimid, the means of saving my life!
Still to come is significant intervention to rebuild the weakened bones in my ribs and hips—that won’t be advisable until the chemotherapy reduces the myeloma load on my system—with the first treatment scheduled for my return to Mayo in mid-November. In the meantime, I’m dealing with a fourth cracked rib, but the painkillers have made this an easier task than I had with the first three.
So, by this time next week, I expect to be in significantly less pain, and hope to have the various markers by which they measure the progress (or regress) of MM moving in the right direction. Florence has been doing an awe-inspiring job of taking care of me—everything from managing my medical care to putting on my socks in the morning. Family and friends have rallied around with great food, thoughtful notes, generous infusions of mirth, and heartfelt expressions of prayers and good wishes. You’ve all combined to hold me up when sheer pain had me reeling. It’s all more than I could have expected, certainly more than I deserve, but not more than I can appreciate, nor more than I will remember with a full heart.
The October 22 Report: On the morning of Friday, October 17, my scalp began to itch. By that evening, my skin on my face was turning red and feeling warm. That evening, Florence took me to the Borgess Hospital emergency room, which gave me Benadryl, and sent me home. By the morning of Saturday, October 18, my head was doing an alarming imitation of the local jack-o-lanterns. We feared that I might be reacting to my pain medication, so we cut that out, too. I was now in full-blown reaction to at least one of the drugs I was taking, and the fifth lumbar vertebra, with no pain killers to mask it, was reminiscent of a Bowie knife twisting maliciously in my lower back.
By Sunday morning, October 19, it was back to Borgess, where a wonderful team of doctors, led by our close friend, Dr. Dan Stewart, and including Dr. Radha Vemuri, my Hematologist at the West Michigan Cancer Center, and Dr. Greg Nowakowski, my Hematologist at the Mayo Clinic, got the drug reaction under control with the use of steroids, and found a pain reliever that removed the figurative Bowie knife from my back. On Monday, October 20, Dr, Bozarth, an Interventional Radiologist, successfully performed the verteboplasty, thus rebuilding lower lumbar vertebra. While it is still tender from the surgery, the pain of the former compression fracture has been effectively relieved, allowing me to walk normally again, and someday soon, to be able to bend over once again. Obviously, this is a great development!
Our team of Drs. Stewart Vemuri, and Nowakowski, however, identified a much less happy development: the cause of the drug reaction. They eliminated the initial suspects one-by-one: the pain relievers, the aspirin, and the first set of steroids. The culprit, unfortunately, turned out to be Revlimid, the chemotherapy agent of choice. Florence has since discovered that, according to research conducted by the manufacturer; of the 37,000 people who have been prescribed Revilimid 11 have had reactions. That’s right—I am the twelfth person worldwide to wash out of a Revlimid regimen. I guess I have always believed that I am special, but here is hard proof!
We now go to the second-best chemo treatment, Velcade, which unfortunately has to be administered by infusion, instead of by pill. We hope that this will work, but we are mindful that, for two days, I seemed to be handling the Revilimid well, too—until it hit me like an angry rhino. If all goes well, therefore, we will start the infusion of Velcade at the West Michigan Cancer Center on Monday, October 27, and if I can tolerate it, the first cycle will come to an end in mid-November, just in time for our return visit to the Mayo Clinic.
So, with our continuing gratitude to our marvelous doctors, nurses and other medical professionals, continuing thankfulness to our friends who feed us both spiritually and literally, and with my personal awe at Florence’s boundless loving care for me, I’ll try to keep future news reports more positive from here on out.
With love,
Joel
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
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
Announcement #4
November 14, 2008
Dear Friends and Family:
I am writing this from the Mayo Clinic, where we have just gotten some good news. Tests here have indicated a dramatic drop in the monoclonal proteins produced by the myeloma. After completion of just a single round of velcade chemotherapy, the level of monoclonal proteins dropped by about 70%, from a level that just three weeks ago was threatening kidney damage to a still high, but less physically threatening, level. This means that I am responding very well to the velcade, and getting better.
The biggest physical symptom I’m now grappling with is muscle pain—as opposed to the bone pain that was my nemesis before taking velcade. The muscles in my back, in particular, have been tensed for so long that they are susceptible to spasms, and it is at its worst after a nap or in the morning after a night’s sleep. When the spasms hit, they are so painful that everything else must stop. The plan is to treat these spasms with massage, heat, and muscle relaxants. So far, not much response, but it is early in the treatment yet.
The plan now is for me to undergo three more rounds of velcade chemotherapy in Kalamazoo. If this results in the virtual elimination of the monoclonal proteins, as is expected, by mid-January we will be ready for the next step, which will be taken in Rochester, Minnesota. First, they will harvest my stem cells. This process will take about a week. Second, they will do two runs of an extremely powerful chemotherapy agent that will drive the myeloma down to almost zero, but in the process, destroy much of my immune system. This will take only a couple of days. Third, they will transplant my stem cells back into me, where they will slowly develop into a new immune system. This will take 5-8 weeks to happen, depending on possible setbacks (for example, I could get a nasty opportunistic infection that, in some cases, would be life-threatening). But if all goes well, by mid-March, I should be able to return home from Mayo, with a new immune system, and in a stable remission.
There are lots of possible obstacles in the way, not least of which are the opportunistic infections that could easily get hard to control within the context of a compromised immune system. About one in every one hundred transplants, the patient does not survive. Virtually 100% of transplant patients suffer from mouth sores, nausea, and other uncomfortable side effects. For at least a couple of weeks post-transplant, I will be weak and exhausted.
But these are risks I am willing to take. I am already in less pain than I have been for two months. The prospect of getting back to a normal life again—no pain, normal-strength bones—makes this entire intermediate struggle and unpleasantness seem worthwhile.
I’ll keep you updated as this great adventure continues!
Warm regards,
Joel
Dear Friends and Family:
I am writing this from the Mayo Clinic, where we have just gotten some good news. Tests here have indicated a dramatic drop in the monoclonal proteins produced by the myeloma. After completion of just a single round of velcade chemotherapy, the level of monoclonal proteins dropped by about 70%, from a level that just three weeks ago was threatening kidney damage to a still high, but less physically threatening, level. This means that I am responding very well to the velcade, and getting better.
The biggest physical symptom I’m now grappling with is muscle pain—as opposed to the bone pain that was my nemesis before taking velcade. The muscles in my back, in particular, have been tensed for so long that they are susceptible to spasms, and it is at its worst after a nap or in the morning after a night’s sleep. When the spasms hit, they are so painful that everything else must stop. The plan is to treat these spasms with massage, heat, and muscle relaxants. So far, not much response, but it is early in the treatment yet.
The plan now is for me to undergo three more rounds of velcade chemotherapy in Kalamazoo. If this results in the virtual elimination of the monoclonal proteins, as is expected, by mid-January we will be ready for the next step, which will be taken in Rochester, Minnesota. First, they will harvest my stem cells. This process will take about a week. Second, they will do two runs of an extremely powerful chemotherapy agent that will drive the myeloma down to almost zero, but in the process, destroy much of my immune system. This will take only a couple of days. Third, they will transplant my stem cells back into me, where they will slowly develop into a new immune system. This will take 5-8 weeks to happen, depending on possible setbacks (for example, I could get a nasty opportunistic infection that, in some cases, would be life-threatening). But if all goes well, by mid-March, I should be able to return home from Mayo, with a new immune system, and in a stable remission.
There are lots of possible obstacles in the way, not least of which are the opportunistic infections that could easily get hard to control within the context of a compromised immune system. About one in every one hundred transplants, the patient does not survive. Virtually 100% of transplant patients suffer from mouth sores, nausea, and other uncomfortable side effects. For at least a couple of weeks post-transplant, I will be weak and exhausted.
But these are risks I am willing to take. I am already in less pain than I have been for two months. The prospect of getting back to a normal life again—no pain, normal-strength bones—makes this entire intermediate struggle and unpleasantness seem worthwhile.
I’ll keep you updated as this great adventure continues!
Warm regards,
Joel
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