After my fiasco with the 24-hour urine collection this week, I didn't know whether they would get any decent test results. However, I checked the Patient Gateway web site today and found results posted for both my blood and urine electrophoresis. Fortunately, they both came back negative with no monoclonal protein detected. That's great! I made it through another month. I don't overly stress about this, but there is always this slight anxiety every month wondering if my time has run out. Thankfully, it hasn't.
Today I had my annual dermatology exam. Being a fair-haired Irishman who has gotten many a sunburn, I have had my share of skin cancer issues over the years. For the most part, they have been relatively minor basal cell carcinomas. I did have one squamous cell carcinoma many years ago, but the scariest one was the Stage 0 in situ melanoma that I had a few years back. Fortunately, in situ melanomas have not yet penetrated the dermal layer, so they are unable to metastasize. It was removed and I have been OK since. Given my history, these annual checkups are important.
Aside from my own history and proclivity for contacting various forms of skin cancer, my MM treatment adds another element of concern. As part of my stem cell transplant, I received a heavy dose of Melphalan to kill the stem cells in my bone marrow. Melphalan has been known to increase the risk of secondary cancers. On top of that, I have been taking Revlimid for a year and a half now. There has been a recent flap over the finding that Revlimid increases the risk of secondary cancers. After a lot of study, most oncologists (including Dr. Richardson) have concluded that the additional risk is slight (2-3%), and the benefits to MM patients of taking Rev far outweigh the additional secondary cancer risk. However, I was not too pleased to learn that melanoma is one of the more prevalent secondary cancers linked to long-term Revlimid use.
Today's visit with Dr. Reohr went pretty well. I have a few non-malignant keratoses on my face, which she froze by spraying them with liquid nitrogen (called cryosurgery). It seems oxymoronic, but that cold stuff really burns! She did find one questionable spot on my left arm. She wasn't too concerned about it, but she took a biopsy just to make sure. I'll get the biopsy results in a couple of weeks. Assuming that it's OK, I don't go back for another year.
I am pleased to report that I am still going to the gym 3-4 times a week. It's been over a month and I haven't dropped out yet. Now that I have publicly announced this on my blog, I feel like I'm under a lot of pressure to keep going. It would be embarrassing to have to admit to the world that I quit going and that I am a complete worthless failure.
I am looking forward to my annual golf outing to Ocean Isle Beach, NC next month. I am hoping that by then my weight training may have built up a little muscle mass that might help my drives off the tee. It has been disconcerting over the years to see my shots getting shorter and shorter. Losing all that weight since my MM diagnosis also hasn't helped in that regard. If things were to keep deteriorating, the day might come when I won't be able to hit a drive beyond the ladies' tee. For you golfers out there, you know what embarrassment that would entail.
I have just finished a wonderful novel written by one of my fellow Writing Seminar attendees at Dana Farber. The novel is "Flowers of the Sea", by Eric Schoonover. The plot is about uncovering an old mystery involving a presumed love child from World War I, and much of the action takes place at sea. I found it quite engrossing. The opportunity I have been given to get to know people such as Eric is one of the Silver Linings surrounding the cloud of my Multiple Myeloma.
Thursday, January 31, 2013
Monday, January 28, 2013
Back to the Farber
Today was my monthly visit to DFCI for blood tests and Zometa infusion. As usual, this was preceded yesterday by the annoying ritual of collecting a 24-hour urine sample. It didn't go so well. First of all, I forgot to use the collection bottle mid morning. Oops. Then we went out to see an early showing of Le Miz (excellent movie!), after which we met friends for a late lunch. I had forgotten to bring my collection bottle along, so I wasn't sure how I was going to last through all of this. I carefully monitored my liquid intake to make it easier. Fortunately, I was able to hold off without much discomfort until we got home. So then what did I do? I immediately rushed to the bathroom and peed in the toilet! I heard Gretchen scream "No!", but it was too late. Duh!
I almost gave up on whole thing at that point, but I decided to continue anyway. I didn't want to have to repeat this process and make a special trip into Boston to submit my sample. This morning, I dutifully handed the nurse the bottle containing what pitifully small amount of urine I had collected. I noted my mental lapses on the form I handed in with the sample. I have no idea what effect all this will have on the results, if any. Oh well.
The hematology results came back pretty quickly. The good news is that my platelets are in the normal range and my RBC, HCT, and Hgb counts have improved, so I'm less anemic than I have been. However, my White Blood Cell (WBC) count dropped from 3.1 last month to 2.6 (normal is above 3.8). This was of concern to Mary and Muriel (not to mention me), because it could mean that my neutrophil count might have dropped as well, which is the most important number that they track on a monthly basis. The differential test showing the absolute neutrophil count (ANC) is always the last result to come in, usually 45 minutes to an hour later than the other results. If the ANC falls below 1.0, I have stop taking the Revlimid and perhaps start taking Neupogen shots to build them back up, not a pleasant prospect.
The other concern is that I was scheduled today to receive the first set of my "baby" immunization shots. When my bone marrow was destroyed for my stem cell transplant, my body's immune system "forgot" all the previous immunities that I had built up during my lifetime. My new immune system was reset to zero and is therefore like that of a baby. I need to redo all the standard immunizations that children get. If my neutrophil count today was too low, I would have to postpone these shots.
So we sat in the waiting room as I constantly monitored the online Patient Gateway looking for the all-important ANC result to pop up. Finally it did. To our relief, the number was 1.28, down from 1.49 last month, but still well above the threshold. Whew!
So in addition to the Zometa, I got 4 vaccination shots today (my arm is still sore). Most of these will be familiar to anyone with a young child: DTaP, Haemophilus (Hib), Pneumococcal (Prevnar), and finally, inactivated polio (IPV).
The last one is the most poignant. During my childhood in the early 50s, polio was a dreaded disease. I remember seeing the ambulance taking away Mr. Pershing across the street, who never returned. The Jennings boy across town was confined to an iron lung for years before succumbing. Stories like this abounded. In our family, my little 2-year-old brother, Terry, was the victim, which affected his left arm. He spent almost a whole year confined to a rehab facility in Pittsburgh. We could only visit once a week. Those were traumatic, wrenching times. A year later, Dr. Jonas Salk invented his savior vaccine, and the pandemic eased.
It was too late for Terry, however, whose arm was permanently crippled. To his immense credit, this has never been an impediment for him. If anything, it has made him more resolute in overcoming obstacles in his life. He has always dealt with his situation with grace and humor. Terry would later take up the game of golf, and it both pains me and gives me pride to report that he is a better golfer than I. Over the years, when asked by other golfers what his handicap is, his stock answer with a straight face has been, "polio".
Yes, I'm proud of my "little" brother (who happens to be half a foot taller than I am). Here's to you, Terry!
I almost gave up on whole thing at that point, but I decided to continue anyway. I didn't want to have to repeat this process and make a special trip into Boston to submit my sample. This morning, I dutifully handed the nurse the bottle containing what pitifully small amount of urine I had collected. I noted my mental lapses on the form I handed in with the sample. I have no idea what effect all this will have on the results, if any. Oh well.
The hematology results came back pretty quickly. The good news is that my platelets are in the normal range and my RBC, HCT, and Hgb counts have improved, so I'm less anemic than I have been. However, my White Blood Cell (WBC) count dropped from 3.1 last month to 2.6 (normal is above 3.8). This was of concern to Mary and Muriel (not to mention me), because it could mean that my neutrophil count might have dropped as well, which is the most important number that they track on a monthly basis. The differential test showing the absolute neutrophil count (ANC) is always the last result to come in, usually 45 minutes to an hour later than the other results. If the ANC falls below 1.0, I have stop taking the Revlimid and perhaps start taking Neupogen shots to build them back up, not a pleasant prospect.
The other concern is that I was scheduled today to receive the first set of my "baby" immunization shots. When my bone marrow was destroyed for my stem cell transplant, my body's immune system "forgot" all the previous immunities that I had built up during my lifetime. My new immune system was reset to zero and is therefore like that of a baby. I need to redo all the standard immunizations that children get. If my neutrophil count today was too low, I would have to postpone these shots.
So we sat in the waiting room as I constantly monitored the online Patient Gateway looking for the all-important ANC result to pop up. Finally it did. To our relief, the number was 1.28, down from 1.49 last month, but still well above the threshold. Whew!
So in addition to the Zometa, I got 4 vaccination shots today (my arm is still sore). Most of these will be familiar to anyone with a young child: DTaP, Haemophilus (Hib), Pneumococcal (Prevnar), and finally, inactivated polio (IPV).
The last one is the most poignant. During my childhood in the early 50s, polio was a dreaded disease. I remember seeing the ambulance taking away Mr. Pershing across the street, who never returned. The Jennings boy across town was confined to an iron lung for years before succumbing. Stories like this abounded. In our family, my little 2-year-old brother, Terry, was the victim, which affected his left arm. He spent almost a whole year confined to a rehab facility in Pittsburgh. We could only visit once a week. Those were traumatic, wrenching times. A year later, Dr. Jonas Salk invented his savior vaccine, and the pandemic eased.
It was too late for Terry, however, whose arm was permanently crippled. To his immense credit, this has never been an impediment for him. If anything, it has made him more resolute in overcoming obstacles in his life. He has always dealt with his situation with grace and humor. Terry would later take up the game of golf, and it both pains me and gives me pride to report that he is a better golfer than I. Over the years, when asked by other golfers what his handicap is, his stock answer with a straight face has been, "polio".
Yes, I'm proud of my "little" brother (who happens to be half a foot taller than I am). Here's to you, Terry!
Friday, January 25, 2013
Time to Move On
Nine years ago, we moved into our beautiful home on the Merrimack River in West Newbury, Massachusetts. It has been a wonderful journey, with many fond memories of family gatherings, birthday and graduation parties, cookouts, nights in front of the fireplace, beautiful sunsets, boat rides on the river, and just relaxing on the deck or the dock enjoying the ambiance, listening to the waves lapping the shore or the cows mooing on the farm across the river.But alas, the time has come to move on. The house is huge, and it's only the two of us here. We have talked for several years now about downsizing. The recent recession didn't help much, so there is a financial incentive for us to move to a smaller place. But the real elephant in the room is this inescapable thing called Multiple Myeloma.
I am very fortunate to be in "remission" right now and feeling good. But the question remains: how long can I continue to be the ladder-climbing, chain-saw-wielding, roof-scampering caretaker of this immense property? There is always a lot to do. It's not that I'm getting old...I'll never admit that. But I do have to admit I've lost a step or two. I don't feel quite as comfortable cavorting on slanted roofs painting or staining or power washing as I used to. My recent ladder experience has given me a new respect for heights. I still love caring for my lawn and garden: trimming, edging, mowing, liming, fertilizing, planting, watering, etc., but the hand writing on the wall is now starting to come into focus. It's really time to start thinking about the "End Game".
I am now going month-to-month at the Farber (as many like to call DFCI). On one of these visits the blood tests might not give me such good news as they have until now. Then what? So we have started talking to realtors, and in the next couple of months we may put our home up for sale. There is no real joy in doing this as we will really miss this place, but we are both comfortable that it is the right thing to do. We are starting to look forward to finding a smaller cozy home that will fit our needs and lifestyle. We love this area, so we won't be moving far. Personally, I wouldn't mind moving to a warmer place where it doesn't get down to zero degrees in January like the last couple of nights (I'm sorry, but this is fucking cold!), but that's not going to happen. Besides, I have to stay close to the "Farber". How lucky we are to have it close at hand! Can't lose that.
There was an interesting article in the Boston Globe today about new understanding of the effect of genetic mutations on cancer. In this case, they found specific genetic mutations in the so-called "junk DNA" region that is a hallmark trait of melanoma. Dana Farber researchers were involved in this study. This is counter to most recent research pointing to the conclusion that cancer is really a mosaic of many different subtypes. In fact, there may be genetic markers, as yet undiscovered, that are triggers for many types of cancer. I guess the "junk DNA" isn't so junky after all. Finding these markers and targeting therapies to counter them could be the future of cancer research. I'm encouraged to see such progress in this area.
Saturday, January 19, 2013
Ruminations
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| Jason U., Brian, Jason, Christine, Jeff, and me |
I went to the game despite the fact that I had been fighting a cold. Fortunately, I suffered no ill effects, and I've been getting steadily better since. However, Gretchen then came down with whatever seems to be going around, and she hasn't been feeling well most of this week. I think we're both now finally out of the woods and on the mend. Considering my compromised immune system, I have been very fortunate to have avoided any serious infections or viruses so far. The AFC Championship game is tomorrow in Foxborough, but discretion being the better part of valor, I've decided to watch this one from home.
Here it is, more than half way through January and I'm still going to gym 3-4 times a week. What perseverance! I spend about a half hour on the exercise bike for cardio, and then another half hour on the strength equipment and weights. I'm starting to feel the difference. I hope I can stick to this. It helps that Gretchen has been going regularly as well, so we can help motivate each other to keep it up. Gretchen's friend, Barbara, admonished me that I haven't given her credit on my blog for my going to the gym, since she is the the one who got Gretchen to go, and I followed. OK, so here's kudos to Barbara. However, if for some reason I end up dropping out, I'll try to find a way to blame it on her. (Just kidding, Barbara!)
I don't go back to DFCI until next week. It seems like it has been a long time. It's very interesting that during the time we were going back and forth to DFCI a couple of times a week, it almost became our second home. We became very close and comfortable with the entire staff. It became a normal routine.
When my condition improved to the point that I only had to go in on a monthly basis, we were both somewhat ambivalent. On the one hand, I was thrilled that I have been able to go on maintenance therapy without having to meet with Dr. Richardson any more. However, there was also a feeling of loss...like missing one's family. Apparently, this is a common occurrence. My transplant nurse, Muriel, likened it to withdrawing from crack! Don't get me wrong. I have no desire to regress back to the point where I have to start frequent therapy again. That time will probably come soon enough. It's just interesting to note how one responds to change.
Thursday, January 10, 2013
Emperor of All Maladies
I am reading a fascinating book, "The Emperor of All Maladies" (2010), by Siddhartha Mukherjee, a Pulitzer Prize winning "biography" of cancer. I'm only part way through the book, but I am coming to realize how important Dr. Sidney Farber was in the fight against cancer. In the 1940's he pioneered the concept of chemotherapy to fight blood cancers, such as leukemia. He was instrumental in founding the wildly-successful Jimmy Fund, which changed the landscape as to how money is raised in the fight against cancer. He almost single-handedly not only transformed the way cancer would be treated in the future, but how both public and private financial resources could be brought to bear in cancer research.
One passage in the book I found interesting. In 1956, despite many failures, Farber was resolute:
"The possibilities thrown open by these (chemotherapy drug) discoveries were enormous: permutations and combinations of medicines, variations in doses and schedules, trials containing two-, three-, and four-drug regimens. There was, at least in principle, the capacity to re-treat cancer with one drug if another had failed, or to try one combination followed by another. This, Farber kept telling himself with hypnotic conviction was not the "finish". This was just the beginning of an all-out attack."
Does that sound familiar? Doesn't that summarize what just went on at the recent ASH Meeting? I find myself both awed by Farber's prescience over half a century ago and also mildly disturbed that the words in the above passage are almost equally applicable today in the fight against many cancers as they were then. The approach that Farber pioneered then is almost exactly the same approach being used today against Multiple Myeloma. Yes, there have been a number of wonderful drug combinations now being used against MM, but a cure has been elusive, and the methodology being used today really hasn't changed much in 50 some years. I guess it just goes to show what an implacable foe this cancer is.
Of course there are now promising approaches to develop vaccines to marshal the body's own defenses against the cancer, as well as individualized targeted therapies based on specific cytogenetic characteristics. These may transform the landscape over the next couple of years. Let's hope so.
I came across another quote in the book that stopped me in my tracks. This is from the "Annals of Internal Medicine" (1993) by Michael LaCombe:
"The best (doctors) seem to have a sixth sense about disease. They feel its presence, know it to be there, perceive its gravity before any intellectual process can define, catalog, and put it into words. Patients sense this about such a physician as well: that he is attentive, alert, ready; that he cares. No student of medicine should miss observing such an encounter. Of all the moments in medicine, this one is most filled with drama, with feeling, with history."
When I read that passage, I felt that I was reliving my first visit with Dr. Richardson. It certainly was dramatic and historic for Gretchen and me. Dr. Richardson embodies everything in that quote; his intuition, attentiveness, alertness, and no less important, his caring. How fortunate I am to be under his care, at the great institution founded by Dr. Sidney Farber, as he, Dr. Anderson, and the others at DFCI continue to relentlessly pursue a cure for MM. I feel like am a part of history unfolding. I am optimistic that I will benefit from the fruits of their tireless labors, along with those of many others around the world, to conquer this malady.
Enough said!
One passage in the book I found interesting. In 1956, despite many failures, Farber was resolute:
"The possibilities thrown open by these (chemotherapy drug) discoveries were enormous: permutations and combinations of medicines, variations in doses and schedules, trials containing two-, three-, and four-drug regimens. There was, at least in principle, the capacity to re-treat cancer with one drug if another had failed, or to try one combination followed by another. This, Farber kept telling himself with hypnotic conviction was not the "finish". This was just the beginning of an all-out attack."
Does that sound familiar? Doesn't that summarize what just went on at the recent ASH Meeting? I find myself both awed by Farber's prescience over half a century ago and also mildly disturbed that the words in the above passage are almost equally applicable today in the fight against many cancers as they were then. The approach that Farber pioneered then is almost exactly the same approach being used today against Multiple Myeloma. Yes, there have been a number of wonderful drug combinations now being used against MM, but a cure has been elusive, and the methodology being used today really hasn't changed much in 50 some years. I guess it just goes to show what an implacable foe this cancer is.
Of course there are now promising approaches to develop vaccines to marshal the body's own defenses against the cancer, as well as individualized targeted therapies based on specific cytogenetic characteristics. These may transform the landscape over the next couple of years. Let's hope so.
I came across another quote in the book that stopped me in my tracks. This is from the "Annals of Internal Medicine" (1993) by Michael LaCombe:
"The best (doctors) seem to have a sixth sense about disease. They feel its presence, know it to be there, perceive its gravity before any intellectual process can define, catalog, and put it into words. Patients sense this about such a physician as well: that he is attentive, alert, ready; that he cares. No student of medicine should miss observing such an encounter. Of all the moments in medicine, this one is most filled with drama, with feeling, with history."
When I read that passage, I felt that I was reliving my first visit with Dr. Richardson. It certainly was dramatic and historic for Gretchen and me. Dr. Richardson embodies everything in that quote; his intuition, attentiveness, alertness, and no less important, his caring. How fortunate I am to be under his care, at the great institution founded by Dr. Sidney Farber, as he, Dr. Anderson, and the others at DFCI continue to relentlessly pursue a cure for MM. I feel like am a part of history unfolding. I am optimistic that I will benefit from the fruits of their tireless labors, along with those of many others around the world, to conquer this malady.
Enough said!
Monday, January 7, 2013
Health Report
Last time I posted, I was pleased to report that I had escaped the infirmities of all those around me. Well, all good things must come to an end. I finally contracted a cold a few days ago. Fortunately, it has been rather mild...mostly sinus congestion and a cough. Yesterday, though, I felt kind of crappy, so I went to bed early, and by this morning I felt much better. I think I'm getting over it without succumbing to more serious flu-like symptoms. Usually when I get a cold like this, it lasts for many days or a week or more, but this seems like it's already on the mend. Considering my compromised immune system, that's pretty amazing. I hope I'm not prematurely celebrating this. After all, tomorrow I might be singing a different tune. But I am hopeful.
I was going to hold off on reporting on this because it might just be a flash in the pan, but I have started going back to the gym. I belong to Planet Fitness, but I haven't used my membership much over the last year or so. However, a couple of weeks ago, I spent an hour with their personal trainer, Jimmy, coming up with a personalized combined cardio/strength regimen. I don't believe in New Years resolutions (you feel like shit when they inevitably fail), but this seems to be a good time to get back into the swing of things. Gretchen has been going to the gym regularly of late, so I hope we can inspire each other to keep going. I'm tired of looking at myself in the mirror in the morning and thinking I look like that 97-pound weakling who had sand kicked in his face by the bully in those old Charles Atlas ads. (You have to be of a certain age to remember those ads.) Anyway, I feel good enough to go back to the gym tomorrow morning. Now that I have reported on this to the world, there may be some additional pressure for me to keep going so I won't have to admit to being a total fuckup.
I guess I have gotten a little overconfident about my MM treatment status lately. Usually, I would anxiously await the pathology results from my blood and urine tests from my monthly visits. However, it just occurred to my today that I hadn't even bothered to check online for the results from my last visit on Dec. 27. Hello! So I went online and found to my relief that my 24-hour urine test result still showed the same result of "No monoclonal protein detected". Good news! It's been over 9 months since my ASCT, and I am still doing fine. Who knows how long this may last, so I will just take this one month at a time.
I was going to hold off on reporting on this because it might just be a flash in the pan, but I have started going back to the gym. I belong to Planet Fitness, but I haven't used my membership much over the last year or so. However, a couple of weeks ago, I spent an hour with their personal trainer, Jimmy, coming up with a personalized combined cardio/strength regimen. I don't believe in New Years resolutions (you feel like shit when they inevitably fail), but this seems to be a good time to get back into the swing of things. Gretchen has been going to the gym regularly of late, so I hope we can inspire each other to keep going. I'm tired of looking at myself in the mirror in the morning and thinking I look like that 97-pound weakling who had sand kicked in his face by the bully in those old Charles Atlas ads. (You have to be of a certain age to remember those ads.) Anyway, I feel good enough to go back to the gym tomorrow morning. Now that I have reported on this to the world, there may be some additional pressure for me to keep going so I won't have to admit to being a total fuckup.
I guess I have gotten a little overconfident about my MM treatment status lately. Usually, I would anxiously await the pathology results from my blood and urine tests from my monthly visits. However, it just occurred to my today that I hadn't even bothered to check online for the results from my last visit on Dec. 27. Hello! So I went online and found to my relief that my 24-hour urine test result still showed the same result of "No monoclonal protein detected". Good news! It's been over 9 months since my ASCT, and I am still doing fine. Who knows how long this may last, so I will just take this one month at a time.
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