Dear Diary,
I've made it half-way through the holidays.
It seems a shame to view Christmas and New Year's in that manner. These are supposed to be happy, memorable times, filled with family, friends, goodies, and optimism.
And they are.
But to those whose health is compromised, they also represent a challenge. Worry about how all the exertion and turmoil will make you feel, and how long you'll be able to endure it. Concern about whether you'll have the energy to treat each friend and family member with the respect and cheer they are due.
Such notions are always in the back of one's mind at times like this.
At any rate, the news is good. Monday's consultation with my chemo oncologist was very successful. The involved series of x-rays snapped last week showed no new problems. The blood test results continue to be excellent. There's nothing to indicate that the back pain I'm experiencing is related to my cancer. What's more, the discomfort has improved somewhat, which is good news.
But a new problem has erupted. I am experiencing a gout-like, arthritis-like pain in my right foot. It's fairly acute, though not quite serious enough yet to resort to my trusty cane. What triggered this? While I have lived well this holiday, I don't think I've been so profligate as to warrant an attack of gout.
And so this is discussed with my chemo oncologist, too. Gout is a side-effect of the treatment for myeloma, so it's not a total surprise. During the spring, as a precaution, I was automatically prescribed Allopurinol, a gout-fighting medication. However, it failed to head off my horrendous gout-like attack in September, and my stem cell transplant doctors cancelled the prescription at that time.
The chemo oncologist now questions why it was cancelled, and re-prescribes it. In addition, he writes me a script for Indocin to knock back the current attack. I'll use hydrocodone to control the intense pain. The drawback is that I'll be over-drugged for a while.
On Monday I also was given an IV of Aredia, the bone-building compound. This medication alone can lead to serious discomfort after a few hours. Over the next couple of days the painful condition in my foot intensifies, for whatever set of reasons, then it gradually begins to dissipate. Today it's been reduced to a mere nagging discomfort. In perhaps a few days it will totally disappear.
For those who like to read, as I do, it is easy to put such problems in perspective. Over the summer, I was sent a book by my long-time friend Mary, a librarian. The book, "The Great Silence", about life in Britain in the months after the conclusion of World War I, is a case in point. Long sections of this non-fiction tome are devoted to the experiencies of the wounded, expecially those who suffered from horrendous, disfiguring facial wounds. Before the Great War of 1914-1918, whose centennial approaches, these soldiers would have quickly died. But with the progress made in battlefield medicine, the First World War saw many of them survive to be shut away, viewed with revulsion, and experimented on with newly-developed techniques in plastic surgery. Fortunately, some great strides were made in this art, but never quite enough. Learning about that episode made my experiences pale in comparison and rendered my affliction and treatment much more endurable.
I've also read two articles about the fine author Laura Hillenbrand, who wrote the 2001 best seller "Seabiscuit" (many of you have no doubt seen the great film), and the current best seller "Unbroken ". My good friends Barb, Frank, and Sara made a gift to me of a subscription to "Sports Illustrated" (more than mere tales about sports, this magazine is a chronicle of difficulties defied) a while back, and a brief December 10 article in that magazine reminded me of her monumental accomplishments in the face of huge health challenges. Her mysterious illness was described in an even more graphic article in a July 2003 issue of "The New Yorker". (Read the "New Yorker" article (warning: it's very long!) at: www.cfids-cab.org/MESA/Hillenbrand.html, the Sports Illustrated article (short) at http://sportsillustrated.cnn.com/vault/article/magazine/MAG1179925/index.htm and the "SI" interview pertaining to the afore-mentioned SI article (of medium length) at : http://sportsillustrated.cnn.com/2010/writers/tim_layden/12/15/hillenbrand.q.a/index.html)
Knowing what many people have endured before me challenges me to rise above my own difficulties and take the steps to accomplish great things and improve the state of my health. I hereby resolve to do that.
And let's face it. It's the right time of year for resolutions, isn't it?
Thursday, December 30, 2010
Monday, December 27, 2010
Thursday, December 23, 2010
Something has developed that may offer a glimpse into what my life will be like well into the future.
I've noticed significant pains in my lower back and left side for the last couple of days.
It's quite possible that this discomfort has nothing to do with my cancer, and everything to do with the list of modest chores I chose to tackle a few days ago. These weren't arduous tasks, but they were enough to leave me a bit winded. Could I have strained my damaged, out-of-shape body enough to cause the pain?
But from now on, any soreness at all will remind me of last winter and spring, and the pain in my torso which led to my diagnosis of multiple myeloma. Each future discomfort will forever be viewed as suspect. I'll have no choice but to get it checked by medical personnel. I fear I'll be haunted like this for the rest of my life.
There is an odd coinicidence and break, though. I've long been scheduled for an extensive series of x-rays to check on the condition and progress of my bones. That session will be later this morning. And next Monday, December 27 I have a consultation, and a bone treatment with Aredia, also originally scheduled quite a while back. The timing couldn't have been luckier and better. I must assume that any serious problems will be caught and evaluated quickly. I'll have to ease my mind this Christmas with that thought. Wish me luck!
I've noticed significant pains in my lower back and left side for the last couple of days.
It's quite possible that this discomfort has nothing to do with my cancer, and everything to do with the list of modest chores I chose to tackle a few days ago. These weren't arduous tasks, but they were enough to leave me a bit winded. Could I have strained my damaged, out-of-shape body enough to cause the pain?
But from now on, any soreness at all will remind me of last winter and spring, and the pain in my torso which led to my diagnosis of multiple myeloma. Each future discomfort will forever be viewed as suspect. I'll have no choice but to get it checked by medical personnel. I fear I'll be haunted like this for the rest of my life.
There is an odd coinicidence and break, though. I've long been scheduled for an extensive series of x-rays to check on the condition and progress of my bones. That session will be later this morning. And next Monday, December 27 I have a consultation, and a bone treatment with Aredia, also originally scheduled quite a while back. The timing couldn't have been luckier and better. I must assume that any serious problems will be caught and evaluated quickly. I'll have to ease my mind this Christmas with that thought. Wish me luck!
Friday, December 17, 2010
Thursday, December 16, 2010
This morning, I reported to the cancer center for an extensive series of blood tests that would check on my progress.
Later, the nurse called me aside to whisper a report to me on the results.
She said, "You're perfect."
I said, "Tell that to my wife."
She threw me out.
Later, the nurse called me aside to whisper a report to me on the results.
She said, "You're perfect."
I said, "Tell that to my wife."
She threw me out.
Wednesday, December 15, 2010
More fun today.
This morning, a plastic surgeon operated on a mole on my scalp. It needs to be removed to improve the appearance of my dome, in case I decide to go the "Mr. Clean" route. It also needs to be biopsied to check it for problems. It's in the way of my comb, my razor, and my barber, which could lead to "issues."
The anesthesia was local, and the operation quick. The discomfort was not enough to complain about. However, the bandage covering the operation and stitches was sewn directly to my scalp. Nurse Cratchet, back home, will need to snip two stitches in a few hours to remove the bandage and allow the incision to begin healing. I wondered if she was up to the task.
I needn't have worried. She was terrific. Nary a word of doubt or complaint. Perhaps Florence Nightingale would be a better name.
This morning, a plastic surgeon operated on a mole on my scalp. It needs to be removed to improve the appearance of my dome, in case I decide to go the "Mr. Clean" route. It also needs to be biopsied to check it for problems. It's in the way of my comb, my razor, and my barber, which could lead to "issues."
The anesthesia was local, and the operation quick. The discomfort was not enough to complain about. However, the bandage covering the operation and stitches was sewn directly to my scalp. Nurse Cratchet, back home, will need to snip two stitches in a few hours to remove the bandage and allow the incision to begin healing. I wondered if she was up to the task.
I needn't have worried. She was terrific. Nary a word of doubt or complaint. Perhaps Florence Nightingale would be a better name.
Friday, December 10, 2010
Thursday, December 9, 2010
Victory!
Almost...
Good news this morning. After a review of all my numbers, Dr. Shapiro informed me at today's consultation that a second stem cell transplant will not be necessary.
One can imagine the relief that I felt. A second transplant could well have been another arduous journey, plagued with side effects, exhaustion, possible chemo, daily or almost daily trips to the hospital, constant blood tests, more worry and work on the part of my sorely-tested, exhausted bride, and a life that would continue to be placed on hold. I was of course willing to endure it, but I'd rather not.
With this latest news, we can now plan ahead. Trips to see family, friends, and historical sites. More time to play with my cute little granddaughter. More opportunity to get tasks done around the house. More freedom. And confidence in the future. A real retirement. Life as it should be lived.
But it's not over. I haven't forgotten that there is no cure for multiple myeloma. No doubt I'll be plagued with continuing side effects, disability, and tiredness, quite possibly for the rest of my life. There will be regular checkups to monitor my health and progress. And still more testing is needed to guarantee my current diagnosis of a clean slate. Soon, perhaps, I will have to undergo an MRI, possible x-rays, and a scan to ensure the health of my bones and marrow. There will be, I suppose, other tests. All this will be done to keep a close eye on the myeloma, catch it early if and when it resurfaces, and begin new treatments in a timely manner. We will need to be ever vigilant.
My medication regimen will be modified. Since I currently am very susceptible to shingles, I will need to continue my Bactrim regimen for about a year. I will also be placed on a maintenance medication; once again I will commence a treatment with Revlamid, the thalidomide derivative that was, in my particular case, so wildly successful in knocking back my bone marrow cancer from 90% saturation in May to remission today. This drug is strictly controlled, and I will once again need to sign an affidavit promising that I will not get pregnant, and endure regular phone interviews that monitor my handling of the medication. My new Revlamid dose will be 10 mg, (as opposed to the 25 mg I began in May), three weeks on and one week off. With this adjustment in the strength of the medication, I'm hoping that the drug's side effects will be lessened; with luck, aches and pains will be reduced, and the reduction in blood proteins that makes me more susceptible to infections will be moderated. I'll need to be careful.
But all this is doable. For now, I have my life back. For that, I must give thanks to the tsunami of relatives and friends who helped us, to the field of medicine and the selfless personnel who strove to conquer this affliction and treat me, and to the millions who donated money to the War on Cancer. It's the season to express our gratitude, but it would be impossible for me to adequately do justice in that regard for you all. But I will start with a simple "thank you" to everyone.
Almost...
Good news this morning. After a review of all my numbers, Dr. Shapiro informed me at today's consultation that a second stem cell transplant will not be necessary.
One can imagine the relief that I felt. A second transplant could well have been another arduous journey, plagued with side effects, exhaustion, possible chemo, daily or almost daily trips to the hospital, constant blood tests, more worry and work on the part of my sorely-tested, exhausted bride, and a life that would continue to be placed on hold. I was of course willing to endure it, but I'd rather not.
With this latest news, we can now plan ahead. Trips to see family, friends, and historical sites. More time to play with my cute little granddaughter. More opportunity to get tasks done around the house. More freedom. And confidence in the future. A real retirement. Life as it should be lived.
But it's not over. I haven't forgotten that there is no cure for multiple myeloma. No doubt I'll be plagued with continuing side effects, disability, and tiredness, quite possibly for the rest of my life. There will be regular checkups to monitor my health and progress. And still more testing is needed to guarantee my current diagnosis of a clean slate. Soon, perhaps, I will have to undergo an MRI, possible x-rays, and a scan to ensure the health of my bones and marrow. There will be, I suppose, other tests. All this will be done to keep a close eye on the myeloma, catch it early if and when it resurfaces, and begin new treatments in a timely manner. We will need to be ever vigilant.
My medication regimen will be modified. Since I currently am very susceptible to shingles, I will need to continue my Bactrim regimen for about a year. I will also be placed on a maintenance medication; once again I will commence a treatment with Revlamid, the thalidomide derivative that was, in my particular case, so wildly successful in knocking back my bone marrow cancer from 90% saturation in May to remission today. This drug is strictly controlled, and I will once again need to sign an affidavit promising that I will not get pregnant, and endure regular phone interviews that monitor my handling of the medication. My new Revlamid dose will be 10 mg, (as opposed to the 25 mg I began in May), three weeks on and one week off. With this adjustment in the strength of the medication, I'm hoping that the drug's side effects will be lessened; with luck, aches and pains will be reduced, and the reduction in blood proteins that makes me more susceptible to infections will be moderated. I'll need to be careful.
But all this is doable. For now, I have my life back. For that, I must give thanks to the tsunami of relatives and friends who helped us, to the field of medicine and the selfless personnel who strove to conquer this affliction and treat me, and to the millions who donated money to the War on Cancer. It's the season to express our gratitude, but it would be impossible for me to adequately do justice in that regard for you all. But I will start with a simple "thank you" to everyone.
Monday, December 6, 2010
Sunday, December 5, 2010
My recovery continues, thanks to the help of some great friends. This past week we spent some time in Brewster, on Cape Cod, with our long-time compadres Sue N and Linda D at Sue's vacation condo. We passed the time reading, shopping, and dining out. We also took a moment to wish Happy Birthdays to our treasured long-time colleagues Val D and Dave A.
Back to the Cape! There, our favorite haunt was a snazzy restaurant in picturesque Chatham named the "Impudent Oyster", where Linda's nephew serves as the head chef. The man must be incredibly talented, as it would be impossible to match the terrific lunch we enjoyed at this classy eatery. No trip to Chatham would be complete without a visit to the lighthouse there, and time to stop and gaze at the dramatic ocean view on the point.
Back at the condo we enjoyed a dinner purchased and arranged by Sue and Linda after a visit to "Whole Foods", off I-495 exit 18 near Franklin, along side the highway to the Cape. It's no wonder this natural foods chain is growing leaps and bounds, for the meal was wonderful. Afterwards, Linda, a strong proponent of natural healing, gave my poor neuropathy-damaged feet a welcome, calming rub-down with aromatic oils, after which I felt I could have through-hiked the Appalachian Trail. I think Linda should set herself up in business. The oils are highly odoriferous, the only way, I'm sure, Linda could bear to approach my feet after my spending the day "on the hoof."
During the evening, Donna tutored Sue on the plotlines and characters of the hit TV show "Glee" while viewing this week's episode. The next evening, we watched the Woody Allen film "Vicki, Christina, Barcelona" while my well-traveled bride filled in the blanks on Spanish culture and geography.
Making this trip even more enjoyable for all of us was the realization that we were missing the devastating monsoon and power-outages that we learned in real time our friends back home were living through. Our vacation was well-timed.
And thanks to Sue and Linda, a great healing experience.
Back to the Cape! There, our favorite haunt was a snazzy restaurant in picturesque Chatham named the "Impudent Oyster", where Linda's nephew serves as the head chef. The man must be incredibly talented, as it would be impossible to match the terrific lunch we enjoyed at this classy eatery. No trip to Chatham would be complete without a visit to the lighthouse there, and time to stop and gaze at the dramatic ocean view on the point.
Back at the condo we enjoyed a dinner purchased and arranged by Sue and Linda after a visit to "Whole Foods", off I-495 exit 18 near Franklin, along side the highway to the Cape. It's no wonder this natural foods chain is growing leaps and bounds, for the meal was wonderful. Afterwards, Linda, a strong proponent of natural healing, gave my poor neuropathy-damaged feet a welcome, calming rub-down with aromatic oils, after which I felt I could have through-hiked the Appalachian Trail. I think Linda should set herself up in business. The oils are highly odoriferous, the only way, I'm sure, Linda could bear to approach my feet after my spending the day "on the hoof."
During the evening, Donna tutored Sue on the plotlines and characters of the hit TV show "Glee" while viewing this week's episode. The next evening, we watched the Woody Allen film "Vicki, Christina, Barcelona" while my well-traveled bride filled in the blanks on Spanish culture and geography.
Making this trip even more enjoyable for all of us was the realization that we were missing the devastating monsoon and power-outages that we learned in real time our friends back home were living through. Our vacation was well-timed.
And thanks to Sue and Linda, a great healing experience.
Subscribe to:
Posts (Atom)
