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.
Tuesday, November 30, 2010
Monday, November 29, 2010
Today's consultation with my oncologist was an important one. Within the next few weeks, a determination will be made whether or not to undergo a second stem cell transplant. Blood tests taken this morning will help in making that decision.
The good news is that my blood results today were terrific. Red and white cell counts and plasma readings all look great. I've gained six pounds, thanks in part to the recent holiday and lots of good home cooking. I'm being well taken care of! (Probably too well.)
Not all blood readings could be processed today, however. On December 9, I have a consultation at Albany Medical Center with my stem cell oncologist. At that time, he will look at my recent history and at the full battery of blood tests to determine if a second stem cell transplant is needed. It's 50-50.
I must admit I'm a bit apprehensive. A second transplant and subsequent recovery period would seem like a step backward to me. The first procedure was tough, though not as bad as I expected. I sure would like to avoid a second one. But I've rallied through worse before, and I know I can do it again. Bring it on.
Tonight, at the Brunswick Library, an organizational meeting will be held to begin organizing the benefit "(Make It A) Great Day" half-marathon and walk, scheduled for Sunday, June 5, 2011 (the corrected date). Donations will support the Capital District Cancer Resource Foundation, a charity that offers assistance to area cancer victims who lack the full resources needed to treat this illness. I've witnessed this event's chief organizer, Heidi Bentley Barcomb, in action, and she is a tornado in running shoes. I will help this initiative in any way I can, and I know an army of former students is doing the same. I admire you all, and thank you, too.
Now go out and make it a great day!
P.S. Contact Heidi at heidibarcomb@thedragonflyadventure.com to find out how to help. Learn why the dragonfly has become the symbol of this event.
The good news is that my blood results today were terrific. Red and white cell counts and plasma readings all look great. I've gained six pounds, thanks in part to the recent holiday and lots of good home cooking. I'm being well taken care of! (Probably too well.)
Not all blood readings could be processed today, however. On December 9, I have a consultation at Albany Medical Center with my stem cell oncologist. At that time, he will look at my recent history and at the full battery of blood tests to determine if a second stem cell transplant is needed. It's 50-50.
I must admit I'm a bit apprehensive. A second transplant and subsequent recovery period would seem like a step backward to me. The first procedure was tough, though not as bad as I expected. I sure would like to avoid a second one. But I've rallied through worse before, and I know I can do it again. Bring it on.
Tonight, at the Brunswick Library, an organizational meeting will be held to begin organizing the benefit "(Make It A) Great Day" half-marathon and walk, scheduled for Sunday, June 5, 2011 (the corrected date). Donations will support the Capital District Cancer Resource Foundation, a charity that offers assistance to area cancer victims who lack the full resources needed to treat this illness. I've witnessed this event's chief organizer, Heidi Bentley Barcomb, in action, and she is a tornado in running shoes. I will help this initiative in any way I can, and I know an army of former students is doing the same. I admire you all, and thank you, too.
Now go out and make it a great day!
P.S. Contact Heidi at heidibarcomb@thedragonflyadventure.com to find out how to help. Learn why the dragonfly has become the symbol of this event.
Monday, November 15, 2010
Monday, November 15, 2010
I didn't think there could possibly be any miracles left in store for Donna and me. Surely, I had concluded, we have more than exhausted the store of heaven's favors allotted to us.
But I was wrong. Yesterday, one of the most astonishing events of my life occurred. And we weren't even here to witness it. The story of my life: always a day late and a dollar short!
While Donna and I were away, a horde of friends descended, locust-like, on our home, armed with rakes, tarps, leaf-blowers, gardening gloves, and incredible hearts, and proceeded with a vengeance to attack the leaves that had buried our lawn. A case of beer and a few hours later, the grounds looked like the gardens of Versailles palace.
That, folks, is the very essense of the term "miracle."
I'm not sure, but I think this story perhaps begins the day before, Saturday, with a visit from two Beths: Beth C and MaryBeth. We have concluded that they were serving as spies in the guise of guests. They made note of the despicable condition of our lawn, shin-deep in dead leaves. They then, it seems, proceeded to organize a surrepticious attack on our property, like a Chinese human-wave, its goal to eradicate the botanic enemy. It was an astonishing show of generalship.
I can testify that the deadly foe never had a chance. Not a single leaf was left to threaten our position. The attack was a huge success. The Taliban would quake with fear when faced with a strike-force of this fervor. Unbelievable!
How does one thank an army? I don't know, but I must try. To the incredible team of Beth C and MaryBeth B, I add David C, Drew C, Barry B, Tom B, Sarah B, Ralph D, Terri M, Mary L, Christine S, Brennan, Jeff C, Ali C, Brendan C, Emma C, Mike and Jeanine B and family, Patti L, Kerry O, Sue N, Evan L, Amy S, Maizie S, Angie W, Margaret M, Paul N, Eric M and family, Michelle M, Taylor, Amie B, Torin B, Dr. Alex S, Mary Lynn W, Don W, Michele J, Sharon L, Chris S, and last but not least, Reilly M. I hope I didn't accidently leave anyone out.
I don't know what I could possibly do here to truly thank everyone. The only answer, I think, is to "pay it forward." I'm going to start by doing all I can to help my 97-year-old, widowed neighbor with her leaves. As you could see, her situation isn't all that different from mine. Only she's in better health.
God bless you all.
But I was wrong. Yesterday, one of the most astonishing events of my life occurred. And we weren't even here to witness it. The story of my life: always a day late and a dollar short!
While Donna and I were away, a horde of friends descended, locust-like, on our home, armed with rakes, tarps, leaf-blowers, gardening gloves, and incredible hearts, and proceeded with a vengeance to attack the leaves that had buried our lawn. A case of beer and a few hours later, the grounds looked like the gardens of Versailles palace.
That, folks, is the very essense of the term "miracle."
I'm not sure, but I think this story perhaps begins the day before, Saturday, with a visit from two Beths: Beth C and MaryBeth. We have concluded that they were serving as spies in the guise of guests. They made note of the despicable condition of our lawn, shin-deep in dead leaves. They then, it seems, proceeded to organize a surrepticious attack on our property, like a Chinese human-wave, its goal to eradicate the botanic enemy. It was an astonishing show of generalship.
I can testify that the deadly foe never had a chance. Not a single leaf was left to threaten our position. The attack was a huge success. The Taliban would quake with fear when faced with a strike-force of this fervor. Unbelievable!
How does one thank an army? I don't know, but I must try. To the incredible team of Beth C and MaryBeth B, I add David C, Drew C, Barry B, Tom B, Sarah B, Ralph D, Terri M, Mary L, Christine S, Brennan, Jeff C, Ali C, Brendan C, Emma C, Mike and Jeanine B and family, Patti L, Kerry O, Sue N, Evan L, Amy S, Maizie S, Angie W, Margaret M, Paul N, Eric M and family, Michelle M, Taylor, Amie B, Torin B, Dr. Alex S, Mary Lynn W, Don W, Michele J, Sharon L, Chris S, and last but not least, Reilly M. I hope I didn't accidently leave anyone out.
I don't know what I could possibly do here to truly thank everyone. The only answer, I think, is to "pay it forward." I'm going to start by doing all I can to help my 97-year-old, widowed neighbor with her leaves. As you could see, her situation isn't all that different from mine. Only she's in better health.
God bless you all.
Saturday, November 13, 2010
Thursday, November 5, 2010
It's Guy Fawkes Day in England, celebrated, I'm told, with bonfires and effigies and parties, all to observe a failed 1605 Catholic plot by that terrorist and his co-conspirators to blow up Parliament and rid the country of its state church. I imagine its ultimate effect was to solidify Anglicanism instead, earning much reprobation for Catholic radicals.
Here in America, we have enjoyed a pleasant week. Our friend Theresa was married on Saturday in a spectacular ceremony and reception. She deserved to be on the cover of Brides magazine! On Monday our long-time colleagues Sue N and Val D brought lunch and companionship, always a pick-me-up from these friends. What's more, we enjoyed at the same time a short surprise visit from our old friend Vinnie, a boost that no medication could ever duplicate. Thank you for everything, folks!
In the meantime a surprise package arrives in the mail. A handsome edition of the King James Bible, a gift from our friends Bill and Linda. Cancer centers often tout the value of religion in contributing to recovery, and my friends have helped make sure that heaven's help is made part of my healing process. I owe them. What's more, in recent years I have read a couple of fabulous books on the story of the creation of the KJB ("Wide As the Waters" by Benson Bobrick, and "God's Secretaries", by Adam Nicolson), and one becomes convinced that divine intervention must have been a part of the team that created this stunning work of art. Thank you Linda and Bill!
Santa Claus also came early! On Friday November 5th Shawn H. and Sue D. dropped off a delivery of 4 days worth of dinners from the Meyers Center VOTEC Culinary Program. These students will eventually end up on the food network! Shawn and Sue saved the day. (Actually four days!)
On Tuesday I consulted with Dr. Mccomber, a plastic surgeon who will remove a mole from my scalp, a procedure now scheduled for December 15. If I end up with a bald dome, a choice I may very well elect to make, I want it to be as smooth, defect-free, and handsome as possible!
A major event, however, occurred earlier today: an appointment with my stem cell oncologist, Dr. Shapiro. I am two-thirds of the way through my 100-day hiatus, at the end of which a bone marrow test will determine if there is any cancer left in my body. If there is, I will undergo a second stem cell transplant, sometime after mid-December. If no cancer is detected, no transplant will be needed. I imagine, in that event, that I would commence some sort of maintenance medication. For now, I am on no anti-cancer meds at all.
My appointment with Dr. Shapiro is highly encouraging. Blood numbers continue to improve. I appear to be in good health. My energy level, my eyesight, and the neuropathy in my feet are all slightly improved.
My feet are currently my biggest concern. They continue to be alternately numb and painful, with discomfort that feels like pins and needles, and shards of glass poking through my skin. My soles have been quite tender. A number of recommendations have been made to me by medical personnel and friends: apply cocoa butter, or capsacian. Neither appears to help. In fact, they seem to increase the discomfort. Also, begin a program of vitamin and supplement therapy that includes lots of B vitamins, vitamin E, acetyl L-carnitine, omega-3 gelcaps, etc. This gets expensive. However, under the theory that one cannot put a price on health, and that it must be good for you even if it does nothing for the neuropathy, I cheerfully begin this regimen. Finally, on a whim, I mail-order from Hammacher-Schlemmer an electric foot massager, a device consisting of a rotating drum festooned with knobs that massage the soles of my feet while I'm seated in an easy chair reading or watching the news. I experienced a large lump in my throat while signing the sizeable check, but I now realize there was no need for my trepidation. The massager is terrific! It seems to do my feet much more good than any other approach. Definitely worth the money.
So for now, my recovery slowly continues. But I await with some anxiety my December 9th appointment with Dr. Shapiro, where I learn of my next step in my fight against multiple myeloma.
Here in America, we have enjoyed a pleasant week. Our friend Theresa was married on Saturday in a spectacular ceremony and reception. She deserved to be on the cover of Brides magazine! On Monday our long-time colleagues Sue N and Val D brought lunch and companionship, always a pick-me-up from these friends. What's more, we enjoyed at the same time a short surprise visit from our old friend Vinnie, a boost that no medication could ever duplicate. Thank you for everything, folks!
In the meantime a surprise package arrives in the mail. A handsome edition of the King James Bible, a gift from our friends Bill and Linda. Cancer centers often tout the value of religion in contributing to recovery, and my friends have helped make sure that heaven's help is made part of my healing process. I owe them. What's more, in recent years I have read a couple of fabulous books on the story of the creation of the KJB ("Wide As the Waters" by Benson Bobrick, and "God's Secretaries", by Adam Nicolson), and one becomes convinced that divine intervention must have been a part of the team that created this stunning work of art. Thank you Linda and Bill!
Santa Claus also came early! On Friday November 5th Shawn H. and Sue D. dropped off a delivery of 4 days worth of dinners from the Meyers Center VOTEC Culinary Program. These students will eventually end up on the food network! Shawn and Sue saved the day. (Actually four days!)
On Tuesday I consulted with Dr. Mccomber, a plastic surgeon who will remove a mole from my scalp, a procedure now scheduled for December 15. If I end up with a bald dome, a choice I may very well elect to make, I want it to be as smooth, defect-free, and handsome as possible!
A major event, however, occurred earlier today: an appointment with my stem cell oncologist, Dr. Shapiro. I am two-thirds of the way through my 100-day hiatus, at the end of which a bone marrow test will determine if there is any cancer left in my body. If there is, I will undergo a second stem cell transplant, sometime after mid-December. If no cancer is detected, no transplant will be needed. I imagine, in that event, that I would commence some sort of maintenance medication. For now, I am on no anti-cancer meds at all.
My appointment with Dr. Shapiro is highly encouraging. Blood numbers continue to improve. I appear to be in good health. My energy level, my eyesight, and the neuropathy in my feet are all slightly improved.
My feet are currently my biggest concern. They continue to be alternately numb and painful, with discomfort that feels like pins and needles, and shards of glass poking through my skin. My soles have been quite tender. A number of recommendations have been made to me by medical personnel and friends: apply cocoa butter, or capsacian. Neither appears to help. In fact, they seem to increase the discomfort. Also, begin a program of vitamin and supplement therapy that includes lots of B vitamins, vitamin E, acetyl L-carnitine, omega-3 gelcaps, etc. This gets expensive. However, under the theory that one cannot put a price on health, and that it must be good for you even if it does nothing for the neuropathy, I cheerfully begin this regimen. Finally, on a whim, I mail-order from Hammacher-Schlemmer an electric foot massager, a device consisting of a rotating drum festooned with knobs that massage the soles of my feet while I'm seated in an easy chair reading or watching the news. I experienced a large lump in my throat while signing the sizeable check, but I now realize there was no need for my trepidation. The massager is terrific! It seems to do my feet much more good than any other approach. Definitely worth the money.
So for now, my recovery slowly continues. But I await with some anxiety my December 9th appointment with Dr. Shapiro, where I learn of my next step in my fight against multiple myeloma.
Friday, November 5, 2010
Thursday, October 28, 2010
Our last day in Virginia's incredible Blue Ridge country. As the weather is sunny and temperatures moderate, we elect to make the 45 minute drive to Staunton, Virginia to visit the birthplace of the 28th President of the United States, Woodrow Wilson. The son of a minister, the site is the former Presbyterian parsonage there, now part of a complex containing a museum and Wilson's presidential library.
Staunton turns out to be a wonderful, quaint town with many narrow, one-way streets, interesting-looking shops, and a plethora of large, stately, old homes. A terrific place to spend lots of quality time, it seems to me. The parking lot is small, the site less than busy, and we are given a private tour of the home by a pleasant, knowledgable staff member. Some of the furniture is original, including the bed in which the president was born. Later, we tour the museum itself, filled with artifacts, and supplemented by its World War I exhibit, perhaps a fairly recent addition designed to recognize the approaching centennial of that conflict. Equally fascinating is the Wilson limosine on display, a handsome Pierce Arrow, complete with a terrific display detailing its near-demise and eventual preservation, itself a wonderful story. How it could be left for years rusting and vandalized in a field and shed is beyond me.
We leave Staunton after our interesting day, sure that some day we will return to see more. Our vacation, sadly, nears its end.
Staunton turns out to be a wonderful, quaint town with many narrow, one-way streets, interesting-looking shops, and a plethora of large, stately, old homes. A terrific place to spend lots of quality time, it seems to me. The parking lot is small, the site less than busy, and we are given a private tour of the home by a pleasant, knowledgable staff member. Some of the furniture is original, including the bed in which the president was born. Later, we tour the museum itself, filled with artifacts, and supplemented by its World War I exhibit, perhaps a fairly recent addition designed to recognize the approaching centennial of that conflict. Equally fascinating is the Wilson limosine on display, a handsome Pierce Arrow, complete with a terrific display detailing its near-demise and eventual preservation, itself a wonderful story. How it could be left for years rusting and vandalized in a field and shed is beyond me.
We leave Staunton after our interesting day, sure that some day we will return to see more. Our vacation, sadly, nears its end.
Thursday, October 28, 2010
Wednesday, October 27, 2010
Washington, D.C. Today we drove there to visit a holy site: Ford's Theater, site of the April 14, 1865 assassination of America's greatest president ever, Abraham Lincoln.
First we toured the museum in the basement, where we viewed the tiny derringer fired by actor John Wilkes Booth to murder the president. We also saw most of the clothing that Lincoln wore that famous night, as well as some of the attire worn by Booth himself. Also on display were guns, knives, and other artifacts used by Booth's co-conspirators, who had been tasked to "take out" other high government officials. One or two came perilously close to succeeding.
Upstairs, we strolled around the theater itself, with its plush red furniture and carpeting, and its elegant scrollwork. I had hoped to gain access to Lincoln's box, where I could view his rocking chair and see the tiny peep hole pre-drilled by Booth to spy on the President. In this I was disappointed, for such access is denied. Nevertheless, we moved to the other side of the balcony, where a fine view of the box could be had. We marvelled at the elevation of the box, from which Booth leapt to the stage in his escape, breaking his ankle in the process. And I made note of the settee in the box, where sat two betrothed Albany, New York residents, Major Henry Rathbone, and his step-sister, Clara Harris, daughter of New York's U.S. Senator. Both would come to tragedy many years later, no less Booth's victims than Lincoln. Only one with a heart of iron would fail to be moved by this museum and its story.
Still another disappointment: we were unable to access the Peterson House, the boarding house across the street to where Lincoln was carried after he was wounded, and in which he died the next morning. A major restoration project had just commenced a few weeks before.
Later we taxied to one of D.C.'s most famous restaurants, the Old Ebbit Grill, where we enjoyed an extraordinary meal, and where we met the man who must be one of the city's greatest characters, 76-year-old Georges de Paris. Georges has served as a White House tailor since the Kennedy Adminstration, and even sports a tape measure around his neck while standing at the bar sipping his wine. One cannot help but be completely charmed by this striking and gregarious man, and we made sure we were photographed with him.
Next we strolled a block-and-a-half to 1600 Pennsylvania Avenue, and viewed the White House at the North Portico. I noted that a pair of moving vans were parked near the entrance. Is something happening that we are not aware of?!?! Are Republicans that certain of the upcoming elections?
We returned to our vehicle, and drove I-66 and I-81 back to our condo at Massanutten. It had been a magical day, never to be forgotten.
First we toured the museum in the basement, where we viewed the tiny derringer fired by actor John Wilkes Booth to murder the president. We also saw most of the clothing that Lincoln wore that famous night, as well as some of the attire worn by Booth himself. Also on display were guns, knives, and other artifacts used by Booth's co-conspirators, who had been tasked to "take out" other high government officials. One or two came perilously close to succeeding.
Upstairs, we strolled around the theater itself, with its plush red furniture and carpeting, and its elegant scrollwork. I had hoped to gain access to Lincoln's box, where I could view his rocking chair and see the tiny peep hole pre-drilled by Booth to spy on the President. In this I was disappointed, for such access is denied. Nevertheless, we moved to the other side of the balcony, where a fine view of the box could be had. We marvelled at the elevation of the box, from which Booth leapt to the stage in his escape, breaking his ankle in the process. And I made note of the settee in the box, where sat two betrothed Albany, New York residents, Major Henry Rathbone, and his step-sister, Clara Harris, daughter of New York's U.S. Senator. Both would come to tragedy many years later, no less Booth's victims than Lincoln. Only one with a heart of iron would fail to be moved by this museum and its story.
Still another disappointment: we were unable to access the Peterson House, the boarding house across the street to where Lincoln was carried after he was wounded, and in which he died the next morning. A major restoration project had just commenced a few weeks before.
Later we taxied to one of D.C.'s most famous restaurants, the Old Ebbit Grill, where we enjoyed an extraordinary meal, and where we met the man who must be one of the city's greatest characters, 76-year-old Georges de Paris. Georges has served as a White House tailor since the Kennedy Adminstration, and even sports a tape measure around his neck while standing at the bar sipping his wine. One cannot help but be completely charmed by this striking and gregarious man, and we made sure we were photographed with him.
Next we strolled a block-and-a-half to 1600 Pennsylvania Avenue, and viewed the White House at the North Portico. I noted that a pair of moving vans were parked near the entrance. Is something happening that we are not aware of?!?! Are Republicans that certain of the upcoming elections?
We returned to our vehicle, and drove I-66 and I-81 back to our condo at Massanutten. It had been a magical day, never to be forgotten.
Tuesday, October 26, 2010
Check off another experience on my personal "to-do" list. Today, we toured Monticello, the world-famous estate of Thomas Jefferson, author of the Declaration of Independence and third President of the United States.
After learning of the great man's huge accomplishments, and after seeing his artistic genius on display in the design and construction of this house and grounds, one cannot help but be awestruck. It is certainly one of the most beautiful and inspiring sites on the face of the earth.
Having done volumes of reading on Monticello in the past, I made sure that I strolled on the serpentine walk in the home's backyard, marveling at the colorful display of flowers that lined it, and I made note of every item on display in Jefferson's "cabinet", his study and library located next to his bedroom. Moments later, I imagined myself at table conversing with Jefferson in the sunny, crystaline "tea room", and I experienced envy at his well-stocked wine and beer cellar. Our entourage also paid due reverence at the cemetery down the hill, where I was extremely moved. Others may have preferred the entryway, decorated with Native American artifacts and his famous clock, or perhaps the parlor, where his harpsicord and pianoforte were on display. Whatever one's preference, no one can dispute that every inch of this estate is magnificent, and not to be missed by anyone.
A red-letter day in my life, made all the more memorable by the company of my wonderful wife, and my treasured sister, brother, and sister-in-law, all of whom helped to make it possible. Thank you!
Monday, October 25, 2010
Monday, October 25, 2010
Friends:
As I write this, we are seated on the deck of a Wyndham/RCI timeshare, high atop Massanutten Mountain near the Blue Ridge range in Virginia. Fall colors here have yet to reach their peak, and the relative warmth allows me to dress in a thin polo shirt and slacks. The views from this complex are breathtaking, the atmosphere relaxing. The deer here are so tame they will scarcely give us a glance as they casually stroll within ten feet of our chairs. You can almost see the deer ticks leaping playfully on their backs.
To the northwest lie the famed Civil War battlefields of Cedar Creek and New Market, in the scenic Shenandoah Valley. To the southwest are situated Monticello and Ash Lawn, the homes of the great patriots Thomas Jefferson and James Monroe, third and fifth presidents of the United States.
This is definitely a corner of America that deserves to be explored. For that reason, yesterday we drove east to Montpelier, the estate of James Madison, "Father of the Constitution" and fourth president of the United States, a man so revered that Vermont named its state capital in honor of his home. The great house is going "back to the future," so to speak. Having been greatly modified, expanded, and modernized by the famed du Pont family, and used for the genteel hobby of breeding and training horses, Montpelier has over the past two decades been acquired and preserved, and almost completely reconstructed to its early nineteenth century grandeur. Its restored beauty has been made possible with the expense of $24 million (whose wouldn't), but it still is not quite complete. Little in the way of furniture, accessories, and carpeting grace the mansion, especially original possessions, as these items continue to be acquired and researched. It is a work in progress.
I recall fourteen months ago standing in the study at Chartwell, the Kent, England estate of Winston Churchill, and thinking how the Free World was saved by his pen and genius in that very room. Now gazing at the library of James Madison, where that great mind researched treatises on government, and studiously prepared to overwhelm his fellow Founding Fathers at the 1787 Constitutional Convention with his notions of what the brand new United States needed to ensure its greatness, I had the very same feeling. As Madison's study is still sparsely furnished, it took a bit more imagination this time. Nevertheless, I think every American needs to spend time here and ponder over the great questions that faced him, and us as well. It makes one think.
At the same time, one is reminded of the many servants that labored for Madison, and for many like him, and allowed him the time and wealth to think his thoughts and attend his conferences, and envision this great republic. More than just the famous helped to establish America.
All this was made possible by my brother John and his wife Jan, as well as by my sister Kate, who all used their generosity, their time share credits, and their incredible organizational skills to make our first extensive vacation possible, and offer a helping hand in my recovery. When one is surrounded by breathtaking beauty and history, one can't help but be restored, just like Montpelier.
Sunday, October 24, 2010
Friday October 22nd
The phone rang and a distinguished, authoritative voice on the other end quipped; "This is Hunziker and Delano Catering Service, and we are planning a dinner delivery to the Peck household". Shawn and Sue had decided to bring us a huge bag of prepared foods from the Saratoga County Vocational Culinary Program. This motherlode included mac & cheese, split pea soup, antipasta salad, clam chowder, stuffed mushrooms, chili, date nut bread, cookies, and brownies. Delicious! People always seem to know when a meal and a hug are needed.
Ed is still trying to cope with the nueropathy in his feet with vitamin/mineral supplements, cocoa butter, and capsaicin lotion. A Brookstone catalog arrived today with an intriguing high tech foot massager. Ordered! Very slowly Ed can see slight improvement in his feet. His current treatment includes his medications, and bloodwork once a week. We will know at the 100 day mark (end of December) whether or not he will have another stem cell transplant. Although it is a 50/50 chance that Ed will have to go through this again, studies have shown that a second treatment is more effective to avoid a multiple myeloma relapse. A second transplant will be less intense than the first one because the rest of Ed's stem cells are safely frozen at "New York Blood Center" located in NYC. As long as there isn't a power outage in NYC, Ed will be fine!
Ed is still trying to cope with the nueropathy in his feet with vitamin/mineral supplements, cocoa butter, and capsaicin lotion. A Brookstone catalog arrived today with an intriguing high tech foot massager. Ordered! Very slowly Ed can see slight improvement in his feet. His current treatment includes his medications, and bloodwork once a week. We will know at the 100 day mark (end of December) whether or not he will have another stem cell transplant. Although it is a 50/50 chance that Ed will have to go through this again, studies have shown that a second treatment is more effective to avoid a multiple myeloma relapse. A second transplant will be less intense than the first one because the rest of Ed's stem cells are safely frozen at "New York Blood Center" located in NYC. As long as there isn't a power outage in NYC, Ed will be fine!
Sunday, October 17, 2010
Cancer Survivor's Weekend Retreat
The lovely Capital District New York Oncology and Hematology nurses arranged an amazing cancer survivors weekend called "Chillin in The Catskills" at the Frost Valley YMCA Forstmann Conference Center in Claryville, New York. Ed's stem cell head nurse Donna, and NYOH administrative director Nancy were instrumental in arranging this magical weekend, and we quickly signed up! The NYOH Capital District Foundation and the Life Beyond Cancer Foundation subsidized this retreat, so our fee was minimal.
Established as one of the nation's first summer camps, Frost Valley YMCA now provides four seasons of outdoor, experiential and educational opportunities. Frost Valley YMCA is a 6,000 acre residential camping, environmental education, and conference center located in the heart of the “forever wild” Catskill Mountain Preserve. Mr. Julius Forstmann was a wool magnate before and during WW1 who made wool uniforms for American servicemen at cost, developed small, medium, and large standards for clothing, and developed a labeling standard to display wool percentages on clothing labels. Forstmann built a wonderful castle and summer retreat at Frost Valley for his family in 1915. In 1951, the family sold the 6,000 acres, castle, and 10 out-buildings for $120,000.00 to the YMCA. What a facility! Check out the YMCA Complex and history through the following websites;
Frost Valley YMCA Camp: http://www.frostvalley.org/index.html
Frost Valley History: http://www.frostvalley.org/about/documents/FVlifeWinter_08.pdf
20 cancer survivors, some accompanied by their caregivers, participated in this wonderful weekend that included activities such as; a musical performance, Halloween party, hay ride, tye-dying, orienteering, hiking, canoeing, candle making, and an inspirational speech by Margie Wood from the Humor Project. Lodging and all meals were included and participants were able to choose their activities at their own pace.
What was most inspirational was hearing everyone's journey and personal story.
We learned so much from everyone, and shared ideas, experiences, and many personal adventures. When you are going through this nightmare it is encouraging to talk to people who share your feelings, and learn many suggestions for healing and coping.
Attached are pictures of our tye-dying project, and Ed on the Castle steps in his new "Indiana Jones" hat.
Thursday, October 14, 2010
Wednesday, October 13, 2010
Proof that there is no bottom to the well of human generosity!
Earlier this afternoon, Amy, Joanne, and Maizie stopped by to deliver a set of meals from the well-known Tamarac Middle School club, Kid's Care (or should it be Kid's Kare?).
I'm sure everyone is aware that favors and gifts of this sort are extremely helpful to those facing difficulties. But no one who has not been the beneficiary of such generosity can ever fully appreciate what they mean. For the sick to overcome the friction and isolation generated by their affliction, a sometimes superhuman effort must be expended. Gaps can appear in their care, and a malaise can set in that makes their handicap seem all the more insurmountable.
Thanks to the support and affection of our friends, that depressing scenario has never shown itself in our household.
We are incredibly obliged to the advisors of Kid's Care for this miracle: Jamie, Sue,and Amy. And who can ever forget the Kid's Care chefs, whose talents proved to rival those of world-famous chefs in five-star New York City restaurants: Ryan, Cassy, Dillon, Sydney, Jaden, Ingrid, Tianna, Adam, Sarah, and Michael.
Thanks to Tom & Judy F. who sent two wonderful Books on Tapes to help us pass the time on our many drives to appointments and treatments!
At the same time, I'm reminded of the many generous people who have driven all this way to deliver meals and food to us across these many months, sometimes more than once! We continue to be indebted to Donna VZ, Beth, Lindsay, Linda D., Linda & Bill, Laura H., Nancy & Ralph, Terri, Patti, Sue, Val, Colleen & Paul, Therese & Ben, Regina & Bob, Nancy P, Jen & Matt, Marsha & Scott, Ann & Sandy, and many others. To this list we must add our thanks to those who contributed gift certificates for meals out, and for coffee, all of which provided fuel for our journey through this ordeal.
Each gift was a miracle, each giver a miracle worker.
Friday, October 8, 2010
Thursday, October 7, 2010
Dear Diary,
Today was a big day. A major consultation took place with my stem cell oncologist. The purpose was to obtain a snapshot of where we are now, and find out what might be happening in the future.
The news so far is good. A blood test indicated that red and white blood cells and platelets continue to increase, and my energy level, ability to fight infection and disease, as well as other factors, have all improved slightly. I can now resume all non-related medications, and drink our well water. I'm starting to drive a little more, and do some light chores for an hour or two. I can mix a bit more with healthy people, and play with my new granddaughter. Life will be a little more normal.
There are still some restrictions, however. I cannot be innoculated with any flu vaccines, or be near people who have had recent live vaccines. Obviously this logically means I should avoid people who may be ill, whether they have the flu or any other affliction. The possibility of contracting shingles, or some other virus, or even a bacterial infection, looms like a Halloween goblin. My stomach continues to be a bit tender, and I'm still unable to eat large meals. This is probably healthier, and cannot be viewed as a negative. I've been lucky: my appetite has, almost all along, been fine. Nevertheless, diarrhea is still an occasional problem. Finally, my feet, afflicted with neuropathy, continue to be very tender. My eyesight is still a bit blurry as well.
I still can get dizzy at times, especially when first standing up after sitting or reclining. Standing is something I must do slowly, like an old person (Whoops! Now I'M old!). What's more, I'm still experiencing some forgetfulness and brain fog, but there are those who would testify I have been guilty of those issues well before the Big C arrived, especially from friends of different political persuasions and sports team loyalties. I've lost some muscle tone and strength, and will eventually need to start an exercise program. In addition, I've lost a bit of weight. Not a lot. This, too, cannot be considered much of a negative, as I certainly could afford to lose some, and still can. Finally, I must ingest a ton of medications each day. The accumulation of side effects must be considerable, but I think I should be glad that such effects aren't far worse. I really have little by way of complaint in that regard. I know how lucky I am.
What does the future hold? The oncologist has indicated that I must still undergo a weekly blood test to monitor my progress. There will be a handful of consultations with my stem cell sawbones and my chemo oncologist in the coming weeks. In about two months, officially 100 days after my stem cell transplant, a big test will be administered. If I am clear of cancer, I will probably commence some sort of maintenance medication. If a bit of myeloma is still detected, I will probably undergo a second stem cell transplant. Chances appear to be 50-50. This approach is new. Much of my program is still experimental, but the very latest research seems to indicate that this schedule is the greatest guarantee of success. I feel I'm in good hands.
I continue to be extremely confident. I feel the worst is over, and that I'm able to enjoy my family, and the fall weather and colors a bit. I consider myself to be extremely lucky.
And one more thing. I want to thank Justin Bieber for singing Happy Birthday to me.
Today was a big day. A major consultation took place with my stem cell oncologist. The purpose was to obtain a snapshot of where we are now, and find out what might be happening in the future.
The news so far is good. A blood test indicated that red and white blood cells and platelets continue to increase, and my energy level, ability to fight infection and disease, as well as other factors, have all improved slightly. I can now resume all non-related medications, and drink our well water. I'm starting to drive a little more, and do some light chores for an hour or two. I can mix a bit more with healthy people, and play with my new granddaughter. Life will be a little more normal.
There are still some restrictions, however. I cannot be innoculated with any flu vaccines, or be near people who have had recent live vaccines. Obviously this logically means I should avoid people who may be ill, whether they have the flu or any other affliction. The possibility of contracting shingles, or some other virus, or even a bacterial infection, looms like a Halloween goblin. My stomach continues to be a bit tender, and I'm still unable to eat large meals. This is probably healthier, and cannot be viewed as a negative. I've been lucky: my appetite has, almost all along, been fine. Nevertheless, diarrhea is still an occasional problem. Finally, my feet, afflicted with neuropathy, continue to be very tender. My eyesight is still a bit blurry as well.
I still can get dizzy at times, especially when first standing up after sitting or reclining. Standing is something I must do slowly, like an old person (Whoops! Now I'M old!). What's more, I'm still experiencing some forgetfulness and brain fog, but there are those who would testify I have been guilty of those issues well before the Big C arrived, especially from friends of different political persuasions and sports team loyalties. I've lost some muscle tone and strength, and will eventually need to start an exercise program. In addition, I've lost a bit of weight. Not a lot. This, too, cannot be considered much of a negative, as I certainly could afford to lose some, and still can. Finally, I must ingest a ton of medications each day. The accumulation of side effects must be considerable, but I think I should be glad that such effects aren't far worse. I really have little by way of complaint in that regard. I know how lucky I am.
What does the future hold? The oncologist has indicated that I must still undergo a weekly blood test to monitor my progress. There will be a handful of consultations with my stem cell sawbones and my chemo oncologist in the coming weeks. In about two months, officially 100 days after my stem cell transplant, a big test will be administered. If I am clear of cancer, I will probably commence some sort of maintenance medication. If a bit of myeloma is still detected, I will probably undergo a second stem cell transplant. Chances appear to be 50-50. This approach is new. Much of my program is still experimental, but the very latest research seems to indicate that this schedule is the greatest guarantee of success. I feel I'm in good hands.
I continue to be extremely confident. I feel the worst is over, and that I'm able to enjoy my family, and the fall weather and colors a bit. I consider myself to be extremely lucky.
And one more thing. I want to thank Justin Bieber for singing Happy Birthday to me.
Thursday, September 30, 2010
Bad to the Bone!
Here's a picture of Edward looking like a Badass Biker Dude. A skull and crossbones tattoo would definitely add to his new look. The nurses said it would take about 3 months for his hair to grow back properly, but I secretly think he likes sporting this new look.
Anybody need an IV pole - Free?? The medical profession needs to "Go Green." Ed only used an IV pole 5 times at home when the visiting nurse administered his IV antibiotics. Nurse Donna from the stem cell program recommended we use the shiny silver pole for a bird feeder holder, or a pole for climbing vines. Additionally, we had to collect Ed's medical waste consisting of discarded IV bags, tubes, and bandages, and bring them back to Albany medical center for proper disposal. I do really feel qualified to become a nurse now. Our normal dinner table conversation now turns to medical jargon and blood levels.
Nurse Cratchett also had to make another important appearance. I spent 2 hours on the phone arguing and ranting to CDPHP, New York Oncology and Hematology, and Capital Imaging about Ed's medical bills. One recent $2,800.00 MRI bill was denied because CDPHP claimed that the MRI was needed because of a car accident that occurred in 2007. They said the bill needed to go to "No Fault" claim. Even though the MRI was ordered years later by on Oncologist for Ed's Multiple Myeloma diagnosis! After arguing for hours with every agency involved, I had to request a letter faxed from Amica Insurance to CDPHP saying that Ed's car accident case was closed.(A car rear ended Ed in 2007 and he only needed one MRI) CDPHP said that the only way that this situation could be rectified was by acquiring this letter. All the parties I "talked" to stated they thought it was also ridiculous! These organizations now know me by my first name.
Ed's $89,000.00 Stem Cell transplant was also denied (even though it was originally approved) because CDPHP had totally wrong information. Years ago Tamarac School made married couples get on a family plan so they could save $400.00 dollars a year. This only lasted a few years, and Ed and I are now on individual insurance plans. Of course CDPHP still has Ed listed under my plan, and of course they denied it. After numerous phone calls it seems to be rectified. They may know me by name, but I think they have their own "words of endearment" for me when I call!
Ed is feeling better every day, and his major issues continue to be his sore feet from the neuropathy, occasional insomnia, and feeling tired. We have had some wonderful tips from Linda M. and Joanne C. to help with the sore feet, and we are going to meet with Dr, Shapiro next week to check on these effective treatments. I am pleased that the Dr. now has Ed on a vast array of natural supplements to help with the neuropathy. They want Ed on as few medications as possible to keep his kidneys functioning well. Ed is very prone to Shingles after the transplant, so he is on "Acyclovir" twice a day for an entire year. He has to avoid the grandchildren for two weeks after they receive an inoculation that contains a live virus. He will have to have a full array of all his childhood inoculations in 12 months, 14 months, and 24 months.
We are finally heading to Indian Lake for a mini-family reunion to celebrate my brother Scott's birthday. We were going to take the Harley, but the weather isn't cooperating.
Monday, September 27, 2010
Monday, September 27, 2010
Dear Diary,
My days are beginning to settle into a smoother, more hum-drum regularity. To the reader, that probably sounds a bit regretful, but in my case it is a welcome respite. Our morning visits to the hospital, once scheduled for each day, are now less frequent. Stomach upsets and digestion issues have become less common. I am now merely dog-tired, rather than thoroughly incapacitated.
Improvement cannot be measured in days, for my condition each morning seems the same as it did the night before. But when viewed across the weeks, healing has definitely commenced. It can't come too soon.
Not all goes as wished. For starters, there is tremendous pain in my feet, like each of them had been slashed multiple times by a razor. This has definitely limited my ability to walk for exercise or do light chores. It even hurts me at night and keeps me awake. Tylenol doesn't touch the discomfort. Nurses tell me that this pain is the result of "neuropathy", nerve damage caused by this affliction and treatment. I'm sure my high sugar numbers a few weeks ago haven't helped. I have been placed on high doses of vitamins and supplements to combat this problem, including B6, B12, folic acid, vitamin E, and acetyl L-carnitine. So far, no improvement, but this approach must be given time.
Another drawback is the decline in my eyesight. Both close viewing and distance have been affected. This has made reading and TV viewing a challenge, and I am doing less of both because of it. As with my feet, the nurses tell me that this, too, is the result of my situation. I'm told that my vision will improve with time. I should not see an eye doctor for corrective lenses for at least six months. Oh, well.
Friends and family continue to be incredibly supportive. Get well cards arrive daily, and tasty donated meals and desserts have still come our way in recent weeks. Many thanks to my daughter, Therese, Sister Kate, to Matt and Jen, and to Scott, Marsha, Beth, Colleen, Paul, Bob, Regina, Ann, and Sandy. Indeed, it's almost as if these people conferred with one another so that their donations are spread out rather than arriving all at once. What's more, they have inspired Donna to crack the cookbooks, and create some tasty concoctions of her own.
All these folks and more have ensured that my myeloma has not become a weight-loss regimen.
My days are beginning to settle into a smoother, more hum-drum regularity. To the reader, that probably sounds a bit regretful, but in my case it is a welcome respite. Our morning visits to the hospital, once scheduled for each day, are now less frequent. Stomach upsets and digestion issues have become less common. I am now merely dog-tired, rather than thoroughly incapacitated.
Improvement cannot be measured in days, for my condition each morning seems the same as it did the night before. But when viewed across the weeks, healing has definitely commenced. It can't come too soon.
Not all goes as wished. For starters, there is tremendous pain in my feet, like each of them had been slashed multiple times by a razor. This has definitely limited my ability to walk for exercise or do light chores. It even hurts me at night and keeps me awake. Tylenol doesn't touch the discomfort. Nurses tell me that this pain is the result of "neuropathy", nerve damage caused by this affliction and treatment. I'm sure my high sugar numbers a few weeks ago haven't helped. I have been placed on high doses of vitamins and supplements to combat this problem, including B6, B12, folic acid, vitamin E, and acetyl L-carnitine. So far, no improvement, but this approach must be given time.
Another drawback is the decline in my eyesight. Both close viewing and distance have been affected. This has made reading and TV viewing a challenge, and I am doing less of both because of it. As with my feet, the nurses tell me that this, too, is the result of my situation. I'm told that my vision will improve with time. I should not see an eye doctor for corrective lenses for at least six months. Oh, well.
Friends and family continue to be incredibly supportive. Get well cards arrive daily, and tasty donated meals and desserts have still come our way in recent weeks. Many thanks to my daughter, Therese, Sister Kate, to Matt and Jen, and to Scott, Marsha, Beth, Colleen, Paul, Bob, Regina, Ann, and Sandy. Indeed, it's almost as if these people conferred with one another so that their donations are spread out rather than arriving all at once. What's more, they have inspired Donna to crack the cookbooks, and create some tasty concoctions of her own.
All these folks and more have ensured that my myeloma has not become a weight-loss regimen.
Monday, September 20, 2010
Sunday, September 19, 2010
I knew this day would come.
I had been told over and over by the nurses that the Melphalan, the high-dose chemo, would definitely cause my hair to fall out. Yet what little hair Mother Nature had allowed me to keep continued to hang tough for two weeks. Even the nurses were a bit puzzled.
By this past Thursday, however, it suddenly became obvious that my greying mop would not be spared. Each combing brought forth a wad of my once firmly-planted locks. We decided to see how far this would go before chosing what course of action to take. Perhaps if the hair shedding was brief in duration, drastic action would not be necessary.
Unfortunately, Friday and Saturday proved to be just as follically destructive, if not worse. And so, Sunday morning, the decision was made to shave my head. The hair loss had been creating a terrible mess in bathrooms, and on towels and clothing. What's more, my entire mane seemed to go grey within the last few days. I sure got old fast.
We were visiting family at Indian Lake. A stool was carried to the back lawn there, and Donna began to use a pair of shears to cut what hair was left. Then my newly-purchased Norelco electric razor was put to work. First the spring-release trimmer was employed to pare the shortened hair down to the nub. Then the triple-head razor was applied to shave the hair to the skin. It didn't take long. It was over.
For most men, this step might usually be little cause for chagrin. The bald head becomes a banner of pride, proof of the heroic struggle against the big "C". It might even add a bit of sex appeal to some males. But for women, I think it must come at a terrible price. A woman's hair is her pride, which often may be lost along with her locks. It's even possible that the public may look upon her with a sense of pity or shock, the bald head or the head scarf broadcasting her affliction for all to see.
Maybe I'm wrong. I hope I am. Attitudes need to change. All cancer patients deserve the wonderful support I've enjoyed these past few months. The bare head should not be allowed to become a metaphorical Scarlet Letter.
Tuesday, September 14, 2010
Great News!!!! Tuesday September 14th
Just a quick update to say that things have really changed over the past 2 days - and it's all good! Ed was told yesterday that he didn't need to take home his IV medications in the 15lb. bag that he was hauling around. I can't tell you how much this picked up his spirits! The visiting nurse also doesn't need to stop by anymore.
His blood numbers and white cells have increased enough that he doesn't have to be totally isolated anymore. He still has to avoid crowds and sick people. (Something we like to avoid anyway!) Starting Wednesday he only has to go to the hospital to check his blood work. Thursday he gets his port removed! :)
He chemo damaged a lot of fast growing cells, which included the stomach and hair cells. Hence the nauseousness and occasional diarrhea. His hair was starting to slightly thin/fall out today, so we will see if he has to shave his head. He claims he is still dog tired and "spacey". He actually walked 2/3 of a mile yesterday and today - which is a big deal!
Bottom line is that Ed has done extremely well during this entire procedure. He progressed just as they predicted, but he didn't get many of the extreme side effects that sometimes accompany this treatment (sores in mouth, throwing up, hives from the platelet transplant). The doctor and nurses were impressed all along with his progress. Unequivocally his positive attitude and cheerfulness definitely added to his speedy recovery. I totally marvel at his spirit and cheerfulness, even when he hits rock bottom. His attitude has kept me totally grounded, and being his caregiver has been a pleasure. I only had 2 days where I felt very lonely and depressed because Ed was sleeping most of the time, and too weak to talk. Other than that we have enjoyed our long rides to the hospital, reading, and watching movies together. Considering how sick he has been - he is great company. He still misses teaching, but as he gets healthier , he will be able to enjoy more of his retirement.
Thanks to Colleen and Paul for their Dunkin' Donuts gift certificate. This will be well used for pumpkin lattes at the hospital! A shout out also to Barb B. for her extreme gift and ever ending support. Can't thank her enough. Additionally thanks to Beth C. for bringing over a yummy fantastic chicken potato casserole tonight for dinner. All the calls, cards, e-mails, and texts have been more than uplifting, and we could never thank people enough.
Well enough philosophical dribble - Ed will be back to Blog soon!
His blood numbers and white cells have increased enough that he doesn't have to be totally isolated anymore. He still has to avoid crowds and sick people. (Something we like to avoid anyway!) Starting Wednesday he only has to go to the hospital to check his blood work. Thursday he gets his port removed! :)
He chemo damaged a lot of fast growing cells, which included the stomach and hair cells. Hence the nauseousness and occasional diarrhea. His hair was starting to slightly thin/fall out today, so we will see if he has to shave his head. He claims he is still dog tired and "spacey". He actually walked 2/3 of a mile yesterday and today - which is a big deal!
Bottom line is that Ed has done extremely well during this entire procedure. He progressed just as they predicted, but he didn't get many of the extreme side effects that sometimes accompany this treatment (sores in mouth, throwing up, hives from the platelet transplant). The doctor and nurses were impressed all along with his progress. Unequivocally his positive attitude and cheerfulness definitely added to his speedy recovery. I totally marvel at his spirit and cheerfulness, even when he hits rock bottom. His attitude has kept me totally grounded, and being his caregiver has been a pleasure. I only had 2 days where I felt very lonely and depressed because Ed was sleeping most of the time, and too weak to talk. Other than that we have enjoyed our long rides to the hospital, reading, and watching movies together. Considering how sick he has been - he is great company. He still misses teaching, but as he gets healthier , he will be able to enjoy more of his retirement.
Thanks to Colleen and Paul for their Dunkin' Donuts gift certificate. This will be well used for pumpkin lattes at the hospital! A shout out also to Barb B. for her extreme gift and ever ending support. Can't thank her enough. Additionally thanks to Beth C. for bringing over a yummy fantastic chicken potato casserole tonight for dinner. All the calls, cards, e-mails, and texts have been more than uplifting, and we could never thank people enough.
Well enough philosophical dribble - Ed will be back to Blog soon!
Monday, September 13, 2010
Sunday, September 12, 2010
Sunday, September 12th
Today marks the one month anniverary of Ed's Port insertion. We are being told that it may be removed by this coming weekend. The attached picture is Ed's nurse Christine from the stem cell program. This is where Ed sits hooked up to IV's every single day for about 4 hours. Today Ed's white blood cells jumped from 0.2 to 0.8 since yesterday!! No transfusion toay. :)
While I was driving down the Northway on the way to the hospital this morning, I hear this low gutteral voice next to me annouce "Boy am I sick of this S*#%". I laughed so hard I almost drove off the road!
We want to thank Iain and Sheena, our friends from England, for their wonderful message. Brings back memories of last summer's party in their beautiful botanical garden. The support Ed is receiving from his family, friends, and mates from across the pond has been beneficial to his healing. I am totally convinced that Ed's positive attitude has helped him heal faster and stronger. During this procedure there have been some side effects that surprisingly haven't affected him. So far he has not lost his hair which was supposed to happen by now. The Good Lord may be sparing him becuase he didn't have that much to begin with!
Did I mention that Albany Med. also has a Starbucks?
Did I also mention that caregivers generally receive a "Pandora" bracelet for thier efforts?
Saturday, September 11, 2010
Same place - same station!
Back at the hospital for our morning routine of more fluids and antibiotics. Yesterday's blood levels were the same as the day before - so they didn't give him a blood transfusion. Today his platelets were at 16 (thousand) so he will need another transfusion. White blood cell count has jumped from .1 to .2, so his immune system is bouncing back! Even though his red blood cells are low and he is anemic, they are just monitoring this. Ed's symptoms continue to be extreme tiredness and slight nausea. Ed's weight has dropped 12 lbs. since the beginning of the stem cell treatment. There is a woman from Northville in the room next to ours who is also going through the procedure at the same time. She is staying with her husband for the 5 weeks in the Hyatt Hotel (paid for by insurance) across from the hospital because she lives so far away. Her retired husband was Athletic Director at Wells, and worked with Glenn Goodale (a former Principal from Tamarac School). We are fortunate that we can live at home, and not have to have this treatment at Dana Farber Hospital in Boston.
Thursday Ed's sister Katie stopped by with a load of groceries, and Friday his daughter Therese dropped of a few more necessary items - such as cat food. (I don't know why I bother feeding them. Thursday involved a chipmunk slaughter, and I spent the afternoon disposing of the dead specimens throughout the yard). Ed perked up with Therese's special chocolate sugar free pudding which made his day! Today's menu includes beef stew and sugar free lime jello. The cats will be having chipmunks.
Thursday Ed's sister Katie stopped by with a load of groceries, and Friday his daughter Therese dropped of a few more necessary items - such as cat food. (I don't know why I bother feeding them. Thursday involved a chipmunk slaughter, and I spent the afternoon disposing of the dead specimens throughout the yard). Ed perked up with Therese's special chocolate sugar free pudding which made his day! Today's menu includes beef stew and sugar free lime jello. The cats will be having chipmunks.
Thursday, September 9, 2010
Transfusion Day
Things are going well and Ed is eating better. That may have to do with the delicious pot roast Therese made us for dinner last night! While we were at the hospital, Therese sanitized our bathrooms, living room, and kitchen, washed our bedding, made us dinner, and even took our garbage! What a huge break for me! It was the first day I could relax, read, and watch TV. Son-in-law Matt made some bathroom toilet repairs and continued to finish the trim in our living room renovation. Emotionally this assistance really perked up our spirits.
Ed will soon back to blogging when he feels better. I know that many people are following his stem cell procedure, so I feel compelled to temporarily update the Blog. Our thoughts have been with the students and colleagues at Tamarac during their opening day at school.
On the way into the hospital Ed remarked how much better he felt today. He was given a dose of Tylenol and Benedryl to prevent any reactions from the blood transfusion that he will be getting. His blood count is still at 0.1, and his platelets are down to 27 - hence the transfusion. The part of the white blood cells that fight bacterial infections, the Absolute Neutrophil Count, is currently at 0.
"Another day in Paradise" is our new mantra. I sort of understand how Tom Hanks felt on his isolated island in the movie "Cast Away". When Ed looses his hair he may even look a little like "Wilson".
Ed will soon back to blogging when he feels better. I know that many people are following his stem cell procedure, so I feel compelled to temporarily update the Blog. Our thoughts have been with the students and colleagues at Tamarac during their opening day at school.
On the way into the hospital Ed remarked how much better he felt today. He was given a dose of Tylenol and Benedryl to prevent any reactions from the blood transfusion that he will be getting. His blood count is still at 0.1, and his platelets are down to 27 - hence the transfusion. The part of the white blood cells that fight bacterial infections, the Absolute Neutrophil Count, is currently at 0.
"Another day in Paradise" is our new mantra. I sort of understand how Tom Hanks felt on his isolated island in the movie "Cast Away". When Ed looses his hair he may even look a little like "Wilson".
Wednesday, September 8, 2010
Wednesday Sept. 8th
Last night Ed felt his worst so far. Even though his immune system is trying to bounce back, he is currently feeling his worst. Yesterday Ed only had Ginger ale and 1/2 of a Tuna fish sandwich. After the visiting nurse came and administered his anti-biotic IV Ed was losing it at both ends. He looked like a deer in headlights. Usually he is very upbeat and cheerful, but Last night he described himself as "feeling ugly". This is the only time I have felt helpless, frustrated, and upset. I hate seeing him in this state. The nurses and Dr. assure us that he will start bouncing back in about 3 days. His platelets were at 48 today, so they will hold off to give him a transfusion tomorrow.
As Ed is going through his daily IV procedure, his daughter Therese is currently at our house vacuuming, washing floors, cooking a pot roast, and washing our bedding. Therese will then baby sit Ed while I make the bi-weekly, highlight of my week, dump/recycling run. The cleaner the house is - the less chance of infection for Ed.
Check out SilverFoxSalvage.com
Ed's stem cell doctor, Dr. Shapiro, owns a salvage company with his girlfriend that is incredible. I am very tempted to purchase the lawn statuary of "David" for my side lawn.
As Ed is going through his daily IV procedure, his daughter Therese is currently at our house vacuuming, washing floors, cooking a pot roast, and washing our bedding. Therese will then baby sit Ed while I make the bi-weekly, highlight of my week, dump/recycling run. The cleaner the house is - the less chance of infection for Ed.
Check out SilverFoxSalvage.com
Ed's stem cell doctor, Dr. Shapiro, owns a salvage company with his girlfriend that is incredible. I am very tempted to purchase the lawn statuary of "David" for my side lawn.
Tuesday, September 7, 2010
First Day of School!
This is the first time in 33 years Ed hasn't gone to Tamarac School on the day after Labor Day. Oddly enough we both woke up at 5:00 just like old times! We already got a text message from Mary Beth telling us what was on the menu for the complimentary breakfast and who was speaking at opening ceremonies. The second text I am not able to print!
Yesterday was the first time I have ever heard Ed complain. After the hospital treatment he felt really sick. He described it like having flu symptoms. After his 3 hour nap Ed was able to have my homemade chicken soup and some ginger ale. Finally last evening we took a 1/3 mile walk around the loop with the cat. This walk was a milestone for Ed. It is hard for him to participate in his required exercise and walking program when he feels so sick.
Today his white blood cell count was down to 0.1(normal rate 4.8 to 10.8)and platelets are 68(normal rate 130 to 400). This platelet drop will require a possible blood transfusion tomorrow. Today Ed will have 3 IV drips of mega-antibiotics a day. The visiting nurse from "Anthem Home Infusion" will stop by every evening to change and administer the night-time IV and take his vital signs. It looks like Ed will only have another 10 days of having his port for the IVs.
Tomorrow Ed's daughter Therese and I are going to start cleaning the garage. Ed is concerned. I would never throw away anything of Ed's that is valuable!
Yesterday was the first time I have ever heard Ed complain. After the hospital treatment he felt really sick. He described it like having flu symptoms. After his 3 hour nap Ed was able to have my homemade chicken soup and some ginger ale. Finally last evening we took a 1/3 mile walk around the loop with the cat. This walk was a milestone for Ed. It is hard for him to participate in his required exercise and walking program when he feels so sick.
Today his white blood cell count was down to 0.1(normal rate 4.8 to 10.8)and platelets are 68(normal rate 130 to 400). This platelet drop will require a possible blood transfusion tomorrow. Today Ed will have 3 IV drips of mega-antibiotics a day. The visiting nurse from "Anthem Home Infusion" will stop by every evening to change and administer the night-time IV and take his vital signs. It looks like Ed will only have another 10 days of having his port for the IVs.
Tomorrow Ed's daughter Therese and I are going to start cleaning the garage. Ed is concerned. I would never throw away anything of Ed's that is valuable!
Monday, September 6, 2010
Labor Day
Today is truly a Labor Day for Ed. He is working hard absorbing his IV drips. Albany Med. is like a ghost town, and we had trouble entering the building to get to our Stem Cell Unit. One wonders about who is taking care of the patients here! Nothing more to report, except that Ed feels very weak, headachy, slightly nauseous, and spacey. Normal side effects from the lack of white blood cells, medications, and the sloughing off of dead cells from last week's chemo.
Mary Beth has graciously offered to text Ed tomorrow during all of the opening day ceremonies at Tamarac School so Ed won't feel left out. Our thoughts are with all our former colleagues on this always "joyful" occasion! Go Bengals.
Mary Beth has graciously offered to text Ed tomorrow during all of the opening day ceremonies at Tamarac School so Ed won't feel left out. Our thoughts are with all our former colleagues on this always "joyful" occasion! Go Bengals.
Sunday, September 5, 2010
Sunday Sept. 5th
Just a quick entry to update Ed's progress. Ed's white blood cells are now plummeting and he is now quarantined. This is calle Neutropenia and he is wide open to infections. We still have to travel daily to the hospital, but he has to remain isolated. Vital signs such as temperature, blood pressure, urine output, and blood counts are monitored daily. Starting Tuesday there will be a visiting nurse stopping by to check vital signs and administer a nightly dose of antibiotics.
Ed's white cell count is down to 5 thousand. Red blood cells are at 10.3/30 and his platelets have dropped from 196 to 156. This is all expected and normal. Since he is off the Decatron (steroid) his blood sugar levels have finally gone down. His only side effects right now are his extreme tiredness, funny taste in his mouth, and a slight headache. He is prone to diarrhea right now because the chemo has caused the stomach cells to shed. Special Imodium is on hand for this side effect. Next we are waiting for the hair cells to shed. Last night we purchased a special electric razor to eventually shave his head. Ed has to be extremely careful not to cause any bleeding or cuts where bacteria can enter. He has to avoid flossing and has to clean his teeth with special swabs and solutions.
Unfortunately the cats have not been cooperative to Ed's plight. For some reason they spent the morning winding around Ed's legs and trying to make him trip. They are fully taking advantage of his sedentary status, and find typical feline ways to annoy him. Read "The Black Cat" by Edgar Allen Poe and you will know what Ed is thinking.
Ed's white cell count is down to 5 thousand. Red blood cells are at 10.3/30 and his platelets have dropped from 196 to 156. This is all expected and normal. Since he is off the Decatron (steroid) his blood sugar levels have finally gone down. His only side effects right now are his extreme tiredness, funny taste in his mouth, and a slight headache. He is prone to diarrhea right now because the chemo has caused the stomach cells to shed. Special Imodium is on hand for this side effect. Next we are waiting for the hair cells to shed. Last night we purchased a special electric razor to eventually shave his head. Ed has to be extremely careful not to cause any bleeding or cuts where bacteria can enter. He has to avoid flossing and has to clean his teeth with special swabs and solutions.
Unfortunately the cats have not been cooperative to Ed's plight. For some reason they spent the morning winding around Ed's legs and trying to make him trip. They are fully taking advantage of his sedentary status, and find typical feline ways to annoy him. Read "The Black Cat" by Edgar Allen Poe and you will know what Ed is thinking.
Friday, September 3, 2010
Stem Cell Reinfusion
Yesterday Ed had 3.97 million of his stem cells re-infused into his system. Three bags of his cells arrived by courier from NYC at 11:30am. in a large Styrofoam cooler laden with dry ice. They were then warmed in a water bath and one by one the bags are infused through an IV saline solution. Ed said they looked packages of thin cut steaks encased in plastic. Wishful thinking. You can see his appetite is not affected!
Today we are back on the regular daily routine of checking Ed's weight, blood levels, and IV fluids that include (flushing cell)solutions, and medications, and changing his dressing. Ed has daily injections of Nuelasta that helps the white blood cells come back. Bone pain will be a major side effect of this medication. He is still taking the other meds. listed in the previous Blog. His white blood cells are decreasing and have gone from 5.5 to 4.7 in one day. His red blood cells and hemoglobin are 10.9 and 30.8.
Platelets are 235 which is normal. Kidney and liver function are great and electrolytes are good. All I know is that the nurses are pleased with the statistics and things are progressing normally. His only issue right now is regulating his blood sugar levels, and adjusting his medications.
Daily I haul my thank you notes back and forth with good intentions. I just have enough time after the hospital routine to get the daily chores completed and food prepared. It helps that I am able to leave Ed home alone for short periods of time if I have to pick up groceries or go to the dump. Cell phones are a wonderful thing.
We love hearing from everyone - and I read Ed the daily facebook messages and e-mails. Too many friends and family to mention here - but THANKS!!! We both have Blackberries now, and we can continually check our messages in the hospital. We also want to give a shout out to our friends at the "Endeavour Pub" in Chelmsford, England for following the Blog! We always receive special update/cards/gifts from Lyn and Steve, and have heard from Joyce and Alan. Our Liverpudlian friends Julie and Stewart also regularly keep in touch.
Our Labor Day weekend will include the daily trips to the hospital - but there is a brighter light at the end of the tunnel with the progressing treatment. Finally we will be able to visit our family and camp in Indian Lake, and Ed's brother & sister-in-law John and Jan have kindly invited us to join them at their time share in Massanutten VA in late October. Ed will get to visit his dream trip to Thomas Jefferson's Monticello if all goes as planned. Great friends Sue & Dan and Pat and Carolyn have offered us use of their lovely homes on the Cape. We are more than grateful for these handsome offers and gifts. It has provided Ed with goals to look forward to an active and healthy future!
Today we are back on the regular daily routine of checking Ed's weight, blood levels, and IV fluids that include (flushing cell)solutions, and medications, and changing his dressing. Ed has daily injections of Nuelasta that helps the white blood cells come back. Bone pain will be a major side effect of this medication. He is still taking the other meds. listed in the previous Blog. His white blood cells are decreasing and have gone from 5.5 to 4.7 in one day. His red blood cells and hemoglobin are 10.9 and 30.8.
Platelets are 235 which is normal. Kidney and liver function are great and electrolytes are good. All I know is that the nurses are pleased with the statistics and things are progressing normally. His only issue right now is regulating his blood sugar levels, and adjusting his medications.
Daily I haul my thank you notes back and forth with good intentions. I just have enough time after the hospital routine to get the daily chores completed and food prepared. It helps that I am able to leave Ed home alone for short periods of time if I have to pick up groceries or go to the dump. Cell phones are a wonderful thing.
We love hearing from everyone - and I read Ed the daily facebook messages and e-mails. Too many friends and family to mention here - but THANKS!!! We both have Blackberries now, and we can continually check our messages in the hospital. We also want to give a shout out to our friends at the "Endeavour Pub" in Chelmsford, England for following the Blog! We always receive special update/cards/gifts from Lyn and Steve, and have heard from Joyce and Alan. Our Liverpudlian friends Julie and Stewart also regularly keep in touch.
Our Labor Day weekend will include the daily trips to the hospital - but there is a brighter light at the end of the tunnel with the progressing treatment. Finally we will be able to visit our family and camp in Indian Lake, and Ed's brother & sister-in-law John and Jan have kindly invited us to join them at their time share in Massanutten VA in late October. Ed will get to visit his dream trip to Thomas Jefferson's Monticello if all goes as planned. Great friends Sue & Dan and Pat and Carolyn have offered us use of their lovely homes on the Cape. We are more than grateful for these handsome offers and gifts. It has provided Ed with goals to look forward to an active and healthy future!
Wednesday, September 1, 2010
Wednesday Sept. 1st - New Meds. Day
Thursday, September 2, 2010
The patient speaks:
Today is the big day. I get back the frozen stem cells that were removed a few weeks before. This is a process called reinfusion. Three bags (of the six that were originally harvested) are driven from the New York Blood Center in New York City by a courier. Once here at Albany Med, they are placed in a bath to partially defrost them, and then hung from a tree like any other IV and drip into my port. The process takes about four hours, and it goes smoothly.
All the forces for my recovery are now in place. But the most challenging part lies ahead. As I noted before, the chemo’s negative effects begin to be felt early next week. No doubt, it will be most difficult to maintain an upbeat, positive attitude when in the midst of those days.
That will be the time that I find out what I’m truly made of.
Wednesday, September 1, 2010
DAY 3 with the GREEN BAG
Ed speaks:
How to bathe?
Today I try something new. The bag will hang from a bungee cord strung from the shower curtain rod outside the shower. The tubing is just long enough to allow me to enter the back of the shower and cleanse myself.
This appears to be a much more workable solution to bathing. Another crisis solved!
A visit to the hospital this morning of only several hours, as I sit through an IV infusion of fluids. Feels almost like a vacation.
Day three of Immune System destruction is going well. Ed is still walking around with his hunter green LLBean sack (his new best friend) with two pumps hooked up to his meds. The Ambulatory Infusion Pump (AIP) pump dispenses IV saline solution fluids to hydrate and flush out his dead cells, keep his electrolytes in balance, and protect his kidneys and liver. The second "BAD" pump has the Benedryl, Adivan, and Decatron which prevents nausea. Ed has been doing well and his main symptoms include tiredness and having to use the rest room frequently.
Today a new regimen of drugs have been added that will help prevent infection due to the eventual lack of any white blood cells. These pills will include Acyclovir to prevent Herpes Zoster (shingles), Diflucan to prevent yeast infections, Prilosec for GI upsets, and the antibiotics PenVeek and Levaquin to prevent a myriad of infections. In my mind I can hear my friend Linda again reassuring me it's OK that he is on all these drugs, and his medication regiment will soon be pared down. Sister-in-law Pharmacist Katie will also be contacted to reassure me that the meds. are OK. Most of his problems have been due to drug interactions, which makes me skeptical. Today an issue includes a very high blood sugar level - and meds. have been adjusted. Also his aphresis cathater insertion site needs to be monitored for a possible cellulitis infection. He also has to frequently use a breathing apparatus called an Incentive Spirometer to maximize the oxygenation of his blood and prevent pnuemonia.
Tomorrow at 11:00 am. the start of the stem cell re infusion will start. His very own frozen, processed, stored stem cells will be shipped up from NYcity by courier in the morning. When they arrive they will be thawed in a warming bath and the reinfusion and hydration process will take about 3 hours.
Ed's attached pump makes a whirring noise every 7 seconds around the clock. Makes me think of the Edgar Allan Poe's "Tell Tale Heart."
The patient speaks:
Today is the big day. I get back the frozen stem cells that were removed a few weeks before. This is a process called reinfusion. Three bags (of the six that were originally harvested) are driven from the New York Blood Center in New York City by a courier. Once here at Albany Med, they are placed in a bath to partially defrost them, and then hung from a tree like any other IV and drip into my port. The process takes about four hours, and it goes smoothly.
All the forces for my recovery are now in place. But the most challenging part lies ahead. As I noted before, the chemo’s negative effects begin to be felt early next week. No doubt, it will be most difficult to maintain an upbeat, positive attitude when in the midst of those days.
That will be the time that I find out what I’m truly made of.
Wednesday, September 1, 2010
DAY 3 with the GREEN BAG
Ed speaks:
How to bathe?
Today I try something new. The bag will hang from a bungee cord strung from the shower curtain rod outside the shower. The tubing is just long enough to allow me to enter the back of the shower and cleanse myself.
This appears to be a much more workable solution to bathing. Another crisis solved!
A visit to the hospital this morning of only several hours, as I sit through an IV infusion of fluids. Feels almost like a vacation.
Day three of Immune System destruction is going well. Ed is still walking around with his hunter green LLBean sack (his new best friend) with two pumps hooked up to his meds. The Ambulatory Infusion Pump (AIP) pump dispenses IV saline solution fluids to hydrate and flush out his dead cells, keep his electrolytes in balance, and protect his kidneys and liver. The second "BAD" pump has the Benedryl, Adivan, and Decatron which prevents nausea. Ed has been doing well and his main symptoms include tiredness and having to use the rest room frequently.
Today a new regimen of drugs have been added that will help prevent infection due to the eventual lack of any white blood cells. These pills will include Acyclovir to prevent Herpes Zoster (shingles), Diflucan to prevent yeast infections, Prilosec for GI upsets, and the antibiotics PenVeek and Levaquin to prevent a myriad of infections. In my mind I can hear my friend Linda again reassuring me it's OK that he is on all these drugs, and his medication regiment will soon be pared down. Sister-in-law Pharmacist Katie will also be contacted to reassure me that the meds. are OK. Most of his problems have been due to drug interactions, which makes me skeptical. Today an issue includes a very high blood sugar level - and meds. have been adjusted. Also his aphresis cathater insertion site needs to be monitored for a possible cellulitis infection. He also has to frequently use a breathing apparatus called an Incentive Spirometer to maximize the oxygenation of his blood and prevent pnuemonia.
Tomorrow at 11:00 am. the start of the stem cell re infusion will start. His very own frozen, processed, stored stem cells will be shipped up from NYcity by courier in the morning. When they arrive they will be thawed in a warming bath and the reinfusion and hydration process will take about 3 hours.
Ed's attached pump makes a whirring noise every 7 seconds around the clock. Makes me think of the Edgar Allan Poe's "Tell Tale Heart."
Monday, August 30, 2010
Monday afternoon, August 30, 2010
How many people can claim that an L.L. Bean’s shoulder bag saved their life?
I can.
To wit:
My dual bags of saline solution and high-dose chemo drips nearly finished, our star nurse Christine strides into the exam room with an armload of equipment. I knew I was in for it. We had been forewarned.
For the next few weeks, she announced, I would be tethered to bags of saline solution 24 hours a day. What’s more, the same would be true for anti-nausea medication as well. This nausea compound would be doled out by a battery-operated electronic device about the size of a large paperback book, with both meds fed through five feet of plastic tubing that would enter my chest through my already-mounted catheter or port.
This machine, which makes a sound every half-dozen seconds or so akin to that of a digital camera when snapped, permits me to supplement my automatic doses of anti-nausea medication with the touch of a button, at the same time carefully ensuring that I do not over-medicate. It’s powered by a nine-volt battery. At the first sign of an upset stomach, I can push-button my way to relief.
And what binds this rig together? Christine has fitted it all into a green canvas, dual compartment L.L. Bean valise, with handle and shoulder strap.
I’m not sure this is what old L.L. had in mind when he first opened shop in 1912.
How many people can claim that an L.L. Bean’s shoulder bag saved their life?
I can.
To wit:
My dual bags of saline solution and high-dose chemo drips nearly finished, our star nurse Christine strides into the exam room with an armload of equipment. I knew I was in for it. We had been forewarned.
For the next few weeks, she announced, I would be tethered to bags of saline solution 24 hours a day. What’s more, the same would be true for anti-nausea medication as well. This nausea compound would be doled out by a battery-operated electronic device about the size of a large paperback book, with both meds fed through five feet of plastic tubing that would enter my chest through my already-mounted catheter or port.
This machine, which makes a sound every half-dozen seconds or so akin to that of a digital camera when snapped, permits me to supplement my automatic doses of anti-nausea medication with the touch of a button, at the same time carefully ensuring that I do not over-medicate. It’s powered by a nine-volt battery. At the first sign of an upset stomach, I can push-button my way to relief.
And what binds this rig together? Christine has fitted it all into a green canvas, dual compartment L.L. Bean valise, with handle and shoulder strap.
I’m not sure this is what old L.L. had in mind when he first opened shop in 1912.
D-Day - Immune System Wipeout
Ed started his mega-chemo treatment today. The morning started at Albany Medical Center with blood work drawn to check Ed's platelets and cell counts, and a dressing change at his port site. Ed's chemo called Melphalan is used for Multiple Myeloma patients to inhibit growth of cancer cells. Today Ed's treatment included the Chemo, IV fluids, and Aloxi(an anti-nausea drug). Ed will be going home hooked up to a pump called a BAD pump which stands for Benedryl, Ativan, and Decadron. This medication will be used to prevent nausea, and Ed can self regulate the amount of medication he needs. This same chemo treatment will also be repeated on Tuesday.
For the next three weeks we will be traveling to Albany Med. to check Ed's daily blood work, and he will have various IV fluids administered which will include antibiotics. Daily they will be checking his white and red blood cell counts, and platelets to see what fluids and treatment he will need. If his platelets go too low, he will be administered "Leuko reduced irradiated single donor platelets" from a blood donor. Ed had to sign a release form that stated he was aware of the complications from the meds and blood donations. Always comforting!!
Next week will be the start of his white blood cell count going to zero. We were told that he will have a 99% chance of loosing his hair in two weeks. I will avoid making any hair jokes at this time to respect Ed's plight.(But you know what I am thinking and there will be pictures posted!) Next week Ed will be on a strict diet to prevent any infections. It's a large list of foods, and even bananas aren't safe. Lots of soups and stews. I continue cleaning and sanitizing the house and bedding daily to prevent any complications. The cats, however, are not cooperating.
Lastly, we would like to thank the family members who have continually helped us. We couldn't do it without them, and words cannot express our gratitude. Many friends have also offered, but we have planned ahead and been very organized by stocking up on many supplies. We thank you for your continued offers and prayers!
For the next three weeks we will be traveling to Albany Med. to check Ed's daily blood work, and he will have various IV fluids administered which will include antibiotics. Daily they will be checking his white and red blood cell counts, and platelets to see what fluids and treatment he will need. If his platelets go too low, he will be administered "Leuko reduced irradiated single donor platelets" from a blood donor. Ed had to sign a release form that stated he was aware of the complications from the meds and blood donations. Always comforting!!
Next week will be the start of his white blood cell count going to zero. We were told that he will have a 99% chance of loosing his hair in two weeks. I will avoid making any hair jokes at this time to respect Ed's plight.(But you know what I am thinking and there will be pictures posted!) Next week Ed will be on a strict diet to prevent any infections. It's a large list of foods, and even bananas aren't safe. Lots of soups and stews. I continue cleaning and sanitizing the house and bedding daily to prevent any complications. The cats, however, are not cooperating.
Lastly, we would like to thank the family members who have continually helped us. We couldn't do it without them, and words cannot express our gratitude. Many friends have also offered, but we have planned ahead and been very organized by stocking up on many supplies. We thank you for your continued offers and prayers!
Thursday August 26
Today was the first sunny day on the Cape after 4 days of straight rain from a Nor'eastern. After 4 days of being cooped up with family Monopoly and Uno marathons, it was time to get out in the fresh seaside air. Ed's leg was less painful today, and he wanted to visit Race Point and Provincetown. A few days ago the beaches between these two areas were closed due to a Great White Shark sighting near shore. When the tide is high the seals come closer to shore, the hungry sharks follow them.
The highlight of the week was watching grandson Sean take a ride on a Pirate Ship called "The Sea Gypsy" to hunt buried treasure in Hyannisport. Sean's pirate name was "Sea Boots", and the Pirate Ship was attacked by a mean pirate called "Slash". The kids on the pirate ship attacked Slash with water guns and eventually found the buried treasure. Ed really got a kick out of seeing Sean's reaction to this experience.
Another exciting part of our week were the daily updates from Ann and Sandy in Easton about the escaped migrant worker that attacked a state trooper. The entire search focused for the majority of the week directly around their house! 50 plus troopers, search dogs, night vision helicopters, and Homeland Security planes day and night. Ironically days later, the criminal showed up on our friend Pat's front lawn in Brunswick while he was cutting his grass, looking for directions to a local farm. Former policeman Pat quickly reported the incident to the state troopers, and the criminal was eventually found and arrested in a barn hayloft near Tamarac School. Even more ironic was running into a woman having chemo next to Ed, that said she lived near the location of the original crime, and her son was the one that found the injured State Trooper.
This well needed vacation gave Ed an extra emotional boost before the tough part of the stem cell procedure. After a week of Lobster, clam chowda, ice cream, family outings, and lots of tylenol, it was time to leave and prepare for the upcoming week.
Tuesday, August 24, 2010
Monday, August 23, 2010
Monday, August 23, 2010
Our accommodations at a guest house in Harwichport on Cape Cod are wonderful, almost a throw-back to the 1920’s. My morning shower is still a bit of a challenge, but it works. We hang out with Sean, Jack, Jen, Matt, Eileen, and Pat at Ocean’s Edge Resort in Brewster and wait out the weather, which is extremely blustery. My gout continues to be a problem; each day’s improvement seems to be very small, although I am able to wear sneakers by this time. I must grin and bear it, and wait out this painful illness.
Saturday, August 21, 2010
Our treatment centers at New York Oncology and Hematology (NYOH) and at Albany Medical Center all believe in helping the caregivers and well as the patients, and seek to keep morale high. To that end, they scheduled my treatment around our one-week vacation on Cape Cod.
And so, a dressing inspection and change was arranged for yesterday (Friday, 8/20) afternoon, at Albany Med, in preparation for our departure from home early this morning. I was admonished to keep this dressing dry at all times, as it protects the port or catheter that taps into veins in my upper chest. It is very difficult to shower and do this, and so hygiene necessarily suffers somewhat. Our wonderful nurse, Donna O., has some pointers that are a great help. I use sheets of “Glad Press and Seal,” which I cut and press to the affected area of my chest. Then I secure and seal the edges with one-inch-wide medical tape. Even then, a full shower is not possible. Shampoo and upper body cleansing I do after the shower, in the sink. It is enormously time-consuming, but one must balance the inconvenience with all the effort and expense being made to heal and prolong life. It seems to me a mighty small expense to pay.
Traffic over the Bourne and Sagamore Bridges and onto the Cape can be horrendous, and so we depart from home very early, at 5:30 AM, in order to beat this tie-up. Our effort is a success, and we meet our good friends Marcia and Paul for our traditional breakfast at 10:30 AM at Grumpy’s Restaurant along Rte. 6A in north Dennis. It’s a terrific feed! Our vacation has begun!
All these positive vibes are tempered by my painful leg. The gout in my ankle and foot is slightly improved, but still extremely painful, and I am relegated to wearing bedroom slippers wherever I go. Sometimes I’m even forced to use a cane. The Indocine and Oxycodone prescribed by my primary care physician for this wonderful affliction, which normally cure gout within 24 hours, are very slow to work this time. Why? At this stage in my myeloma treatment, my body’s natural defenses are at what may well be a lifetime peak. Is there something else about myeloma that retards healing in spite of this? I can only hope for a speedy recovery so that I can enjoy my vacation.
Our accommodations at a guest house in Harwichport on Cape Cod are wonderful, almost a throw-back to the 1920’s. My morning shower is still a bit of a challenge, but it works. We hang out with Sean, Jack, Jen, Matt, Eileen, and Pat at Ocean’s Edge Resort in Brewster and wait out the weather, which is extremely blustery. My gout continues to be a problem; each day’s improvement seems to be very small, although I am able to wear sneakers by this time. I must grin and bear it, and wait out this painful illness.
Saturday, August 21, 2010
Our treatment centers at New York Oncology and Hematology (NYOH) and at Albany Medical Center all believe in helping the caregivers and well as the patients, and seek to keep morale high. To that end, they scheduled my treatment around our one-week vacation on Cape Cod.
And so, a dressing inspection and change was arranged for yesterday (Friday, 8/20) afternoon, at Albany Med, in preparation for our departure from home early this morning. I was admonished to keep this dressing dry at all times, as it protects the port or catheter that taps into veins in my upper chest. It is very difficult to shower and do this, and so hygiene necessarily suffers somewhat. Our wonderful nurse, Donna O., has some pointers that are a great help. I use sheets of “Glad Press and Seal,” which I cut and press to the affected area of my chest. Then I secure and seal the edges with one-inch-wide medical tape. Even then, a full shower is not possible. Shampoo and upper body cleansing I do after the shower, in the sink. It is enormously time-consuming, but one must balance the inconvenience with all the effort and expense being made to heal and prolong life. It seems to me a mighty small expense to pay.
Traffic over the Bourne and Sagamore Bridges and onto the Cape can be horrendous, and so we depart from home very early, at 5:30 AM, in order to beat this tie-up. Our effort is a success, and we meet our good friends Marcia and Paul for our traditional breakfast at 10:30 AM at Grumpy’s Restaurant along Rte. 6A in north Dennis. It’s a terrific feed! Our vacation has begun!
All these positive vibes are tempered by my painful leg. The gout in my ankle and foot is slightly improved, but still extremely painful, and I am relegated to wearing bedroom slippers wherever I go. Sometimes I’m even forced to use a cane. The Indocine and Oxycodone prescribed by my primary care physician for this wonderful affliction, which normally cure gout within 24 hours, are very slow to work this time. Why? At this stage in my myeloma treatment, my body’s natural defenses are at what may well be a lifetime peak. Is there something else about myeloma that retards healing in spite of this? I can only hope for a speedy recovery so that I can enjoy my vacation.
Wednesday, August 18, 2010
Wednesday, August 18, 2010
Good news. The pain in my ankle and foot is reduced. Dr. Ryan's prescriptions for Indocin and Oxycodone may be starting to work. The swelling seems the same, and I still use my cane, but moving around is now a bit easier. Donna and I are able to get a few simple chores done.
One disease at a time, please.
One disease at a time, please.
Tuesday evening, August 17, 2010
A miracle has occurred!
One of our favorite nurses, Donna O., calls from the Oncology center at Albany Med. She informs me that a total of over 8 million stem cells were harvested on Monday and Tuesday, and that no more will be needed. Apheresis is over. Only two days were required, rather than three or four. Donna and I can get a bit more sleep in the mornings now! No more injections, tubes, and machines, at least for a few weeks.
As always, though, there is a downside. We will miss our two oncology nurses, Donna and Christine, who became terrific friends. They were always smiling and funny, not to mention incredibly professional. In addition, we will also miss our new friend, Alexander Ryakov, from the New York Blood Center, who performed the actual procedure, and who, like Donna and Christine, also had a great sense of humor. Alex is from Russia and has established a wonderful career for himself in the USA.
One of our favorite nurses, Donna O., calls from the Oncology center at Albany Med. She informs me that a total of over 8 million stem cells were harvested on Monday and Tuesday, and that no more will be needed. Apheresis is over. Only two days were required, rather than three or four. Donna and I can get a bit more sleep in the mornings now! No more injections, tubes, and machines, at least for a few weeks.
As always, though, there is a downside. We will miss our two oncology nurses, Donna and Christine, who became terrific friends. They were always smiling and funny, not to mention incredibly professional. In addition, we will also miss our new friend, Alexander Ryakov, from the New York Blood Center, who performed the actual procedure, and who, like Donna and Christine, also had a great sense of humor. Alex is from Russia and has established a wonderful career for himself in the USA.
Tuesday, August 17, 2010
My second day of apheresis: the syphoning of stem cells from my body.
We are not off to a good start. My swollen left foot and ankle have not improved at all, despite the Colchicine and Oxycodone prescribed the day before, and concerns arise as to what might be causing the intense pain and swelling. The previous Thursday I had begun injecting myself with Neupogen, a treatment that is meant to generate stem cells in my bone marrow and force the overflow into my bloodstream. Is it possible that the Neupogen has caused a form of gout, with uric acid crystalizing in my foot and ankle? How could this happen when I am on Allopurinol, a medication designed to head off this problem?
Could the problem be a blood clot instead? Or cellulitis?
It is decided to proceed with the apheresis, and arrange an appointment for later in the day with my primary care physician. Perhaps an untrasound might be performed.
The morning session is a long one, and we finish at 12:30 PM. The courier dashes in with his cooler, ready to take possession of the bag and dash off to New York City to store my stem cells.
Donna and I stop for a quick lunch, and then jet over to Dr. Ryan's office. As my primary care physician, he concludes that it is indeed gout, and decides to prescribe his favorite medication for this horrendous affliction: Indocin. In addition, he will double my dose of the painkiller Oxycodone. Dr. Ryan has been successful with this approach before. Donna and I leave, confident that things can only get better. We wave a big goodbye to our good friend Jocelyn, who is Dr. Ryan's secretary, and also a former student of ours at Tamarac. It's always worth a visit to Dr. Ryan's office just to see her cheerful face!
We are not off to a good start. My swollen left foot and ankle have not improved at all, despite the Colchicine and Oxycodone prescribed the day before, and concerns arise as to what might be causing the intense pain and swelling. The previous Thursday I had begun injecting myself with Neupogen, a treatment that is meant to generate stem cells in my bone marrow and force the overflow into my bloodstream. Is it possible that the Neupogen has caused a form of gout, with uric acid crystalizing in my foot and ankle? How could this happen when I am on Allopurinol, a medication designed to head off this problem?
Could the problem be a blood clot instead? Or cellulitis?
It is decided to proceed with the apheresis, and arrange an appointment for later in the day with my primary care physician. Perhaps an untrasound might be performed.
The morning session is a long one, and we finish at 12:30 PM. The courier dashes in with his cooler, ready to take possession of the bag and dash off to New York City to store my stem cells.
Donna and I stop for a quick lunch, and then jet over to Dr. Ryan's office. As my primary care physician, he concludes that it is indeed gout, and decides to prescribe his favorite medication for this horrendous affliction: Indocin. In addition, he will double my dose of the painkiller Oxycodone. Dr. Ryan has been successful with this approach before. Donna and I leave, confident that things can only get better. We wave a big goodbye to our good friend Jocelyn, who is Dr. Ryan's secretary, and also a former student of ours at Tamarac. It's always worth a visit to Dr. Ryan's office just to see her cheerful face!
Tuesday, August 17, 2010
3 and 1/2 million stem cells harvested!
Monday, August 16 was very successful. They harvested three and a half million stem cells. They need to collect 8-10 million over the 3-4 days to send to New York City for storage. The courier comes at noon to pick them up and deliver them to the "Cellular Therapy Laboratory" in the Big Apple. All of Ed's blood levels were good today.Tuesday, though, was a rough start. Ed has a very swollen left foot and lower leg that is numb. We may have to go to his primary care physician, Dr. Ryan, and have the leg/foot checked out. They will be giving him a Dopplar ultrasound scan to check out whether he has a blood clot or cellulitis.
Monday, August 16, 2010
First day of Apheresis - Stem Cell Extraction
We arrived at Albany Medical Center and Ed was brought in by wheel chair to the New York Oncology Hematology Center to start his apheresis (Greek for separation). Dr. Shapiro quickly evaluated his swollen ankle and the diagnosis was gout. This painful form of arthritis is caused by high forms of uric acid that form crystals in the blood which causes the pain and inflammation. Two more medications to add to his huge list of drugs. (I am taking out more stock in Pfizer Pharmaceuticals)
Our new best friend Alex is the blood collection specialist who is from the White Plains area and travels a 100 mile radius depending upon which facility requires his attention. Alex is fantastic and explains the procedure every step of the way while he hooks up Ed and monitors his progress. Alex hooked Ed up to the apheresis centrifuge collection machine which separates the blood components (red and white blood cells, platelets, and plasma). The goal is to extract 10 to 20 million blood cells during each extraction. This process usually lasts 2 to 4 extraction treatments. The stem cells are processed and sent to New York City where they will be stored until Ed needs them. After they wipe out his white Blood cells and his immune system is down, they will reintroduce some of his own stem cells. He will have stem cells stored at the NYC facility indefinitely in case he needs more of them in the future. We are told that after the entire 5 week process is over - they have to re-inoculate Ed with all the childhood disease shots (MMR, Tetanus, Chicken Pox, Polio, etc.). Again we are hooked up to full technology with access to the Internet and Blackberry during our hospital visits. Ed will blog. later, when he has more energy. Right now things are going well, and his ankle is becoming less swollen. Ed will stay in the car while I run into the pharmacy and grocery store on the way home. No need to call Social Services - I promise to crack his windows down for some fresh air.
Our new best friend Alex is the blood collection specialist who is from the White Plains area and travels a 100 mile radius depending upon which facility requires his attention. Alex is fantastic and explains the procedure every step of the way while he hooks up Ed and monitors his progress. Alex hooked Ed up to the apheresis centrifuge collection machine which separates the blood components (red and white blood cells, platelets, and plasma). The goal is to extract 10 to 20 million blood cells during each extraction. This process usually lasts 2 to 4 extraction treatments. The stem cells are processed and sent to New York City where they will be stored until Ed needs them. After they wipe out his white Blood cells and his immune system is down, they will reintroduce some of his own stem cells. He will have stem cells stored at the NYC facility indefinitely in case he needs more of them in the future. We are told that after the entire 5 week process is over - they have to re-inoculate Ed with all the childhood disease shots (MMR, Tetanus, Chicken Pox, Polio, etc.). Again we are hooked up to full technology with access to the Internet and Blackberry during our hospital visits. Ed will blog. later, when he has more energy. Right now things are going well, and his ankle is becoming less swollen. Ed will stay in the car while I run into the pharmacy and grocery store on the way home. No need to call Social Services - I promise to crack his windows down for some fresh air.
Tough weekend
Over the weekend Ed had to inject himself with Neupogen every morning and evening. Saturday went well, and Ed was able to go to our niece Danielle's play and see her amazing performance as one of the leads in "Bye Bye Birdie". Saturday evening we had a wonderful gourmet meal at Regina and Bob's and things seemed to be going well. Unfortunately,overnight, Ed had a negative reaction to the medication and his left ankle swelled up. He remained bedridden all day Sunday and literally had to crawl to the bathroom. Help soon arrived when my niece Danielle and nephew Phil arrived to do yard work. Dinner was a wonderful chicken casserole donated by a summer school colleague Laura. Between yard work and waiting on Ed, we were able to watch 5 episodes of The Tudors, and finally witnessed Anne Boleyn getting the axe. This was the highlight of our day!
Thursday, August 12, 2010
11:42 Thursday Morning
They finally wheeled Ed up to surgery about 10:45. They were delayed due to complications from the previous surgery. Comforting!! My friend Linda called my blackberry to tell me where the Dunkin Dunuts was located in the hospital. She must have been reading my mind. They give you a pager to let you know when your loved one returns back to recovery. I am fully technically hooked up here with my laptop, blackberry, and cable TV.
They just brought Ed back at 11:45 and he is doing great! When he got up to surgery the nurse told him she had heard the rumor that Ed was the the first normal patient today! Guess they had some real ringers in here this morning. The nurse had put the ultrasound monitor on Ed's lower neck and said he was having twins. The docs and nurses around here are from Comedy Central! The first thing Ed said when they wheeled him back was "Did you order my steak and Guinness?" He said he was awake for the entire procedure. No pain, great blood pressure, and feeling good. He claims it was a surprisingly easy procedure. They gave us an Anniversary meal of sandwiches, coffee, graham crackers, and an orange. The staff here has been excellent, and we are glad the 1st hurdle is completed. Ed will Blog when he is rested at home. Ed's daughter Therese just called and said while she was at a traffic light in Clifton Park and she saw someone drive a car into the building at Friendlys. You heard it here first!
They just brought Ed back at 11:45 and he is doing great! When he got up to surgery the nurse told him she had heard the rumor that Ed was the the first normal patient today! Guess they had some real ringers in here this morning. The nurse had put the ultrasound monitor on Ed's lower neck and said he was having twins. The docs and nurses around here are from Comedy Central! The first thing Ed said when they wheeled him back was "Did you order my steak and Guinness?" He said he was awake for the entire procedure. No pain, great blood pressure, and feeling good. He claims it was a surprisingly easy procedure. They gave us an Anniversary meal of sandwiches, coffee, graham crackers, and an orange. The staff here has been excellent, and we are glad the 1st hurdle is completed. Ed will Blog when he is rested at home. Ed's daughter Therese just called and said while she was at a traffic light in Clifton Park and she saw someone drive a car into the building at Friendlys. You heard it here first!
Thursday August 12th - 15th Wedding Anniversary
Here we are at Albany Medical Center getting ready for Ed's procedure to stitch an apheresis catheter into his upper chest. It is 10:00 and the 45 minute procedure will start any minute. Albany Med. has Wifi so I can Blog from here. Ed hasn't eaten since last night, and the cooking segment on the Today Show is making him hungry. This all inclusive $80,000.00 stem cell treatment will include a sandwich for lunch after his procedure today. We know how to celebrate our anniversary!
Tuesday, August 10, 2010
Double Booked
Monday Ed had two Doctor's appointments at the same time. Typical! Both offices said to show up - so Ed went to Albany Med. for the earlier appointment with the Stem Cell Doctor. They called over to the Oncologists office to inform them Ed would not be showing up for another chemo treatment. Stem Cell Doctor overrides Oncologist. Monday was a Lung and heart test, and many blood samples were taken. The Stem Cell procedure starts Thursday, August 12 with a "port" or "catheter" to be installed in Ed's vein on his upper left chest. This is how we are going to spend our 15th anniversary! Stem Cell extraction will start the following Monday morning at 8, and will proceed until about 12:30.
Preparation this week has included purchasing new bedding, new tires for the Honda, and a major trip to Sam's Club to stock up on food. Monday night was a Peck family reunion with Ed's half brothers and nephew visiting from Texas and Salem, Massachusetts. Ed is upbeat, confident, and ready to get on with it!
Preparation this week has included purchasing new bedding, new tires for the Honda, and a major trip to Sam's Club to stock up on food. Monday night was a Peck family reunion with Ed's half brothers and nephew visiting from Texas and Salem, Massachusetts. Ed is upbeat, confident, and ready to get on with it!
Monday, August 2, 2010
Sunday, August 1, 2010
A wonderfully pleasant, sunny afternoon. Once again, low humidity. I’m updating my blog while seated comfortably on our patio.
A bee has appeared, and circles my laptop.
I’d better not tempt fate. Time for me to close down shop and retire indoors.
Thursday, July 29, 2010
Perhaps my luck has changed. The week so far has been quiet. No crises! I am hoping conditions stay this way until my stem cell procedure commences two weeks from today.
It’s a chemo day today. The center is almost empty. Extremely unusual. I wonder why. Have all these people been cured? Or have they passed on? I wonder what is in store for me.
Some who come here are angry, feeling as if they are being warehoused, waiting in lines, and having trouble finding a seat. I guess they view it as mistreatment by a heartless system.
I have a different take. The crowds here remind me that I am not alone. The fact that treatment is available is a sign of hope, a sign that not many years ago did not exist. What's more, so many here look and seem like they are having a tougher time than I am. I feel for them. But I also realize that I am making progress, and that hope lives on. It reinforces my positive attitude.
Afterwards, I run errands, and then drive to Esperance to visit with my daughter, and my brand-new granddaughter, Sarah, and to drink my weekly cup of coffee made in her Keurig. No greater incentive to heal exists than one’s children and grandchildren. Sarah deserves to have a grandfather that attends her high school graduation. I plan to be there.
Monday, July 26, 2010
A chemo day. Eyes are much improved, but still not totally right. I don’t mention it to the doctor.
An evening visit from some wonderful friends: Nancy and Ralph D. They bring a tasty dessert, which we eat at the picnic table by the river. The special homemade blueberry sauce is unbelievable! What’s more, they also bring, without forewarning us, dinner for tomorrow and beyond! Chili, and a special corn bread. A wonderfully generous gesture, and very helpful during this trying stretch. We owe them a ton of thanks.
We spend the evening in the man cave till dark, watching the small boats speed by, and talking of the old days. Unusual this summer: temps this evening are moderate, and humidity very low. A great visit.
Sunday morning, July 25, 2010
Warm and humid again.
Our great friend Joe F is in town, and we are all celebrating the baptism of his grandchild. This will be a great opportunity to see old friends and relax.
But should I attend? The swelling is slightly improved, but still very evident and uncomfortable. My eyes are badly bloodshot.
I decide to go at the last minute. My affliction will be camouflaged by a pair of sunglasses.
The ceremony takes place at St. John’s Episcopal Church in Troy, where Nurse Cratchett and I were married, two weeks shy of 15 years before. Then we adjourn to the Fairways in Mechanicville for a wonderful lunch and celebration. It is a great opportunity to see old and dear friends like Joe and his wife Janet (plus their children and grandchildren), Peter and Sue M, Nancy B, Donna VZ, and Penny C, and it picks me up.
I’m glad I decided to attend, but it’s a bit of a tough day.
3 AM, Sunday, July 25, 2010
I awaken in the middle of the night with a strange feeling. I check myself out in the mirror in the bathroom. My eyes are swollen, almost totally shut!
Why?
Could it be from the bee sting? Have I eaten something I shouldn’t have? Is it a medication conflict? Could it have been the fan I placed near me to keep me cool during this warm and muggy night?
Who knows? I spend most of the rest of the night placing bags of ice on my face in an effort to reduce the swelling. What would the doctor say this time?
Saturday, July 24, 2010
We spend a pleasant day at the family motel and cabin business in Indian Lake, in the Adirondack Mountains. It’s great to see Donna’s mother and brother. Donna cleans, and I run errands. Her brother, a talented “culinary artist,” sends us home with a container of homemade spaghetti sauce and some venison steaks. I already know they will be delicious. One doesn’t stay skinny for long with his cooking skills challenging your will power!
My side hurts, right where the horse fly bit me. I look at it in the mirror. The bite is infected! Obviously, my compromised immune system has been unable to help it heal.
We decide to stop at MediCall in Clifton Park on our way home from Indian Lake to get it treated. No sense in taking any chances in my condition.
The doctor doesn’t take long. The wound is drained. He then uses a pair of pliers to pull two stingers from my side. It was not a horse fly after all. Two bees had stung me, at the same time and in the same place!
I am prescribed an antibiotic to fight the infection. Nurse Cratchett grows concerned. She is not a fan of antibiotics, and wonders if they are truly necessary in this case, especially with the possibility of drug conflicts. A quick call to my wonderful pharmacist sister quells our fears.
Thursday, July 22, 2010
Chemo day. At least I thought it was.
I inform my oncologist of my recent adventures. Swollen throat and numb face. He looks at me like I have two heads. Nothing like this has happened to him in the three decades of his practice.
Chemo is cancelled.
We need to learn if the numbness is caused by a lesion, perhaps in my neck or skull, growing and pressing on certain nerves. An MRI is scheduled immediately, next door. An hour in “the tube.” We finish, and I head for home.
The oncologist calls later in the afternoon. No growing lesions. The cause of my still-improving swollen throat and numbness lies elsewhere.
Then the good news. Today’s tests show that there is no residual myeloma found in my latest blood sample. Eureka!
At least on the main challenge, the cancer, we are seeing dramatic improvement.
Wednesday noon, July 21, 2010
Two heroes arrive for lunch. It’s Val D and Sue N, both of whom have done so much for me already. They worked hard on the arrangements to purchase the new picnic table, and on its delivery. It was an unbelievable gesture.
Now they are doing even more!
Val has arrived with a magnificent sweet-potato-and-bacon casserole. Sue has brought huge, delectable tuna sandwiches, filled to over-flowing. I’m told all I need to supply is beverages. I can’t hope to match the culinary talents of Sue and Val, but I can do drinks. We spend a wonderful early afternoon seated at the new picnic table, telling tales, reliving the old days, and watching the yachts float by. My swelling is improved by this time, and I pass inspection. The pressure of the last few days evaporates, and Val and Sue put me at ease.
Thank God for good friends. Val and Sue: you are appreciated. You did more today than you might think!
Wednesday morning, July 21, 2010
I realize something is wrong the moment I awaken.
My throat is swollen, almost to the point of not being able to swallow. Not sore, but swollen. What’s more, the lower half of my face is numb.
What’s happening?
The immediate question is whether or not this is serious enough to report to the emergency room, or schedule another appointment with my doctor. I decide to wait, to see if it improves as the day progresses. I wonder if I am making a mistake. Is this a chance I should take?
Slowly, during the course of the day, the swelling and numbness are reduced. I decide against a doctor visit. No idea of the cause.
Tuesday evening, July 20, 2010
They say that laugher is the best medicine. It must be true, since I read it in the Reader’s Digest.
Then this evening is a terrific tonic. Patti L and Terri M show up at our doorstep with a pizza. We sit at the new picnic table, under the tree, near the river. Terri spins her yarns, and my sides hurt with laughter. Patti and Terri are wonderful at keeping me upbeat and positive, and we have a fabulous time. But it makes me realize even more how much I will miss my workmates.
Thank you Terri and Patti for the lift you gave me during what has begun as a challenging week.
Tuesday afternoon, July 20, 2010
My primary care physician, Dr. Ryan, was kind but firm. My blood sugar readings today are quite a bit lower than they were yesterday, but still too high. My “a1c” test was high, as well. This is a blood test that takes a long term scan of one’s sugar levels. If these readings continue, my stem cell procedure, still slated at this time for August 12, might be delayed. Time to get serious.
A new sugar medication, Glipizide, is prescribed. Use the meter four times a day. Keep records. Watch your diet. Concentrate on foods with low glycemic indices.
It’s going to take a major adjustment in my lifestyle to win this one.
Monday afternoon, July 19, 2010
I let my guard down.
I had been warned. My medication might push my blood sugar levels sky high, the doctors had said. I was told to monitor it carefully. And I did. For the first few weeks of my treatment. Having repeatedly found levels to be good, I let my attention slide.
A phone call from the oncologist, not long after my blood test and chemo treatment at the center. Blood sugar now over 370! Below 120 or 130 is the goal. I blew it!
I schedule a quick appointment with my primary care physician. He has his opportunity to chew me out tomorrow afternoon. I’m ashamed.
Sunday, July 18, 2010
It’s always a pleasant visit to Ann and Sandy’s home. A picturesque drive through the rolling Washington County hills. A site with a spectacular view. A warm, sunny afternoon, but with moderated humidity, a rare day in recent weeks.
I truly enjoy coming here. We talk about so many topics. Books, politics, travel, music, art, home decorating. I enjoy hearing of the various projects on which they are working. I’m always overwhelmed by Ann’s hand-painted icons. And Sandy demonstrates an all-too-short piece on his new clavichord, tucked in a cozy outbuilding.
Next, we eat a terrific, home-cooked lunch. These folks have fun at home, a place that they have made interesting for themselves and their visitors. A bit later we adjourn to lawn chairs in the shade of a mammoth maple. I enjoy two bottles of Sam Adams Seasonal. Then Sandy serves up his latest invention: an afternoon pick-me-up that he claims heightens his senses and his talents, perhaps even to the level of Bach. He blends a half-glass of coffee ice cream with a topper of iced coffee.
He’s right. It’s powerful stuff. This is the best I’ve felt in months! We hate to leave, but it’s late Sunday afternoon, and a long week beckons.
Thursday, July 15, 2010
Donna and I relax on the patio in the dusk and shoot the breeze. Horse flies buzz us, and take a few bites. One nip is especially painful, on my left side, through my shirt. We decide to retreat, and retire indoors.
I didn’t realize horse flies could be so aggressive. Note to self: avoid them in the future. That’s what your screen house is for, stupid!
A wonderfully pleasant, sunny afternoon. Once again, low humidity. I’m updating my blog while seated comfortably on our patio.
A bee has appeared, and circles my laptop.
I’d better not tempt fate. Time for me to close down shop and retire indoors.
Thursday, July 29, 2010
Perhaps my luck has changed. The week so far has been quiet. No crises! I am hoping conditions stay this way until my stem cell procedure commences two weeks from today.
It’s a chemo day today. The center is almost empty. Extremely unusual. I wonder why. Have all these people been cured? Or have they passed on? I wonder what is in store for me.
Some who come here are angry, feeling as if they are being warehoused, waiting in lines, and having trouble finding a seat. I guess they view it as mistreatment by a heartless system.
I have a different take. The crowds here remind me that I am not alone. The fact that treatment is available is a sign of hope, a sign that not many years ago did not exist. What's more, so many here look and seem like they are having a tougher time than I am. I feel for them. But I also realize that I am making progress, and that hope lives on. It reinforces my positive attitude.
Afterwards, I run errands, and then drive to Esperance to visit with my daughter, and my brand-new granddaughter, Sarah, and to drink my weekly cup of coffee made in her Keurig. No greater incentive to heal exists than one’s children and grandchildren. Sarah deserves to have a grandfather that attends her high school graduation. I plan to be there.
Monday, July 26, 2010
A chemo day. Eyes are much improved, but still not totally right. I don’t mention it to the doctor.
An evening visit from some wonderful friends: Nancy and Ralph D. They bring a tasty dessert, which we eat at the picnic table by the river. The special homemade blueberry sauce is unbelievable! What’s more, they also bring, without forewarning us, dinner for tomorrow and beyond! Chili, and a special corn bread. A wonderfully generous gesture, and very helpful during this trying stretch. We owe them a ton of thanks.
We spend the evening in the man cave till dark, watching the small boats speed by, and talking of the old days. Unusual this summer: temps this evening are moderate, and humidity very low. A great visit.
Sunday morning, July 25, 2010
Warm and humid again.
Our great friend Joe F is in town, and we are all celebrating the baptism of his grandchild. This will be a great opportunity to see old friends and relax.
But should I attend? The swelling is slightly improved, but still very evident and uncomfortable. My eyes are badly bloodshot.
I decide to go at the last minute. My affliction will be camouflaged by a pair of sunglasses.
The ceremony takes place at St. John’s Episcopal Church in Troy, where Nurse Cratchett and I were married, two weeks shy of 15 years before. Then we adjourn to the Fairways in Mechanicville for a wonderful lunch and celebration. It is a great opportunity to see old and dear friends like Joe and his wife Janet (plus their children and grandchildren), Peter and Sue M, Nancy B, Donna VZ, and Penny C, and it picks me up.
I’m glad I decided to attend, but it’s a bit of a tough day.
3 AM, Sunday, July 25, 2010
I awaken in the middle of the night with a strange feeling. I check myself out in the mirror in the bathroom. My eyes are swollen, almost totally shut!
Why?
Could it be from the bee sting? Have I eaten something I shouldn’t have? Is it a medication conflict? Could it have been the fan I placed near me to keep me cool during this warm and muggy night?
Who knows? I spend most of the rest of the night placing bags of ice on my face in an effort to reduce the swelling. What would the doctor say this time?
Saturday, July 24, 2010
We spend a pleasant day at the family motel and cabin business in Indian Lake, in the Adirondack Mountains. It’s great to see Donna’s mother and brother. Donna cleans, and I run errands. Her brother, a talented “culinary artist,” sends us home with a container of homemade spaghetti sauce and some venison steaks. I already know they will be delicious. One doesn’t stay skinny for long with his cooking skills challenging your will power!
My side hurts, right where the horse fly bit me. I look at it in the mirror. The bite is infected! Obviously, my compromised immune system has been unable to help it heal.
We decide to stop at MediCall in Clifton Park on our way home from Indian Lake to get it treated. No sense in taking any chances in my condition.
The doctor doesn’t take long. The wound is drained. He then uses a pair of pliers to pull two stingers from my side. It was not a horse fly after all. Two bees had stung me, at the same time and in the same place!
I am prescribed an antibiotic to fight the infection. Nurse Cratchett grows concerned. She is not a fan of antibiotics, and wonders if they are truly necessary in this case, especially with the possibility of drug conflicts. A quick call to my wonderful pharmacist sister quells our fears.
Thursday, July 22, 2010
Chemo day. At least I thought it was.
I inform my oncologist of my recent adventures. Swollen throat and numb face. He looks at me like I have two heads. Nothing like this has happened to him in the three decades of his practice.
Chemo is cancelled.
We need to learn if the numbness is caused by a lesion, perhaps in my neck or skull, growing and pressing on certain nerves. An MRI is scheduled immediately, next door. An hour in “the tube.” We finish, and I head for home.
The oncologist calls later in the afternoon. No growing lesions. The cause of my still-improving swollen throat and numbness lies elsewhere.
Then the good news. Today’s tests show that there is no residual myeloma found in my latest blood sample. Eureka!
At least on the main challenge, the cancer, we are seeing dramatic improvement.
Wednesday noon, July 21, 2010
Two heroes arrive for lunch. It’s Val D and Sue N, both of whom have done so much for me already. They worked hard on the arrangements to purchase the new picnic table, and on its delivery. It was an unbelievable gesture.
Now they are doing even more!
Val has arrived with a magnificent sweet-potato-and-bacon casserole. Sue has brought huge, delectable tuna sandwiches, filled to over-flowing. I’m told all I need to supply is beverages. I can’t hope to match the culinary talents of Sue and Val, but I can do drinks. We spend a wonderful early afternoon seated at the new picnic table, telling tales, reliving the old days, and watching the yachts float by. My swelling is improved by this time, and I pass inspection. The pressure of the last few days evaporates, and Val and Sue put me at ease.
Thank God for good friends. Val and Sue: you are appreciated. You did more today than you might think!
Wednesday morning, July 21, 2010
I realize something is wrong the moment I awaken.
My throat is swollen, almost to the point of not being able to swallow. Not sore, but swollen. What’s more, the lower half of my face is numb.
What’s happening?
The immediate question is whether or not this is serious enough to report to the emergency room, or schedule another appointment with my doctor. I decide to wait, to see if it improves as the day progresses. I wonder if I am making a mistake. Is this a chance I should take?
Slowly, during the course of the day, the swelling and numbness are reduced. I decide against a doctor visit. No idea of the cause.
Tuesday evening, July 20, 2010
They say that laugher is the best medicine. It must be true, since I read it in the Reader’s Digest.
Then this evening is a terrific tonic. Patti L and Terri M show up at our doorstep with a pizza. We sit at the new picnic table, under the tree, near the river. Terri spins her yarns, and my sides hurt with laughter. Patti and Terri are wonderful at keeping me upbeat and positive, and we have a fabulous time. But it makes me realize even more how much I will miss my workmates.
Thank you Terri and Patti for the lift you gave me during what has begun as a challenging week.
Tuesday afternoon, July 20, 2010
My primary care physician, Dr. Ryan, was kind but firm. My blood sugar readings today are quite a bit lower than they were yesterday, but still too high. My “a1c” test was high, as well. This is a blood test that takes a long term scan of one’s sugar levels. If these readings continue, my stem cell procedure, still slated at this time for August 12, might be delayed. Time to get serious.
A new sugar medication, Glipizide, is prescribed. Use the meter four times a day. Keep records. Watch your diet. Concentrate on foods with low glycemic indices.
It’s going to take a major adjustment in my lifestyle to win this one.
Monday afternoon, July 19, 2010
I let my guard down.
I had been warned. My medication might push my blood sugar levels sky high, the doctors had said. I was told to monitor it carefully. And I did. For the first few weeks of my treatment. Having repeatedly found levels to be good, I let my attention slide.
A phone call from the oncologist, not long after my blood test and chemo treatment at the center. Blood sugar now over 370! Below 120 or 130 is the goal. I blew it!
I schedule a quick appointment with my primary care physician. He has his opportunity to chew me out tomorrow afternoon. I’m ashamed.
Sunday, July 18, 2010
It’s always a pleasant visit to Ann and Sandy’s home. A picturesque drive through the rolling Washington County hills. A site with a spectacular view. A warm, sunny afternoon, but with moderated humidity, a rare day in recent weeks.
I truly enjoy coming here. We talk about so many topics. Books, politics, travel, music, art, home decorating. I enjoy hearing of the various projects on which they are working. I’m always overwhelmed by Ann’s hand-painted icons. And Sandy demonstrates an all-too-short piece on his new clavichord, tucked in a cozy outbuilding.
Next, we eat a terrific, home-cooked lunch. These folks have fun at home, a place that they have made interesting for themselves and their visitors. A bit later we adjourn to lawn chairs in the shade of a mammoth maple. I enjoy two bottles of Sam Adams Seasonal. Then Sandy serves up his latest invention: an afternoon pick-me-up that he claims heightens his senses and his talents, perhaps even to the level of Bach. He blends a half-glass of coffee ice cream with a topper of iced coffee.
He’s right. It’s powerful stuff. This is the best I’ve felt in months! We hate to leave, but it’s late Sunday afternoon, and a long week beckons.
Thursday, July 15, 2010
Donna and I relax on the patio in the dusk and shoot the breeze. Horse flies buzz us, and take a few bites. One nip is especially painful, on my left side, through my shirt. We decide to retreat, and retire indoors.
I didn’t realize horse flies could be so aggressive. Note to self: avoid them in the future. That’s what your screen house is for, stupid!
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