I got juiced with steroids today and it seems I'll be up much of the night. Counts are good. White count at 4.2, which is really good for me (3.0 is normal). Hematocrit is at 34, which is also very good for me (normal being 40+). I'm going to a shot of velcade and steroids every week until we head out for MD Anderson for my infusion of additional white cells from Mike. This weekly regime is at my request (god Rifkin must be tired of dealing with this type A personality). I asked why we were on an every other week regime when I still had residual myeloma in me. He immediately capitulated to a once a week regime. When I was taking depositions I never had such success with my interrogations!
Everyone is doing well. Nothing new to report. The shingles have calmed down although I still have the nerve pain in the rear end. Oh, the indignity of it all. These past months have been good in that they have allowed me time to discover that I, in fact, can live with the many limitations this cancer and its treatment have bestowed on me. While I know I have been dealing with them constantly for the past five years, it's mostly felt like I've been moving from one crisis to another. These last months are a relief in that I am not in nor anticipating any impending major assault. Learning to live with the many issues I'm left with (mainly as side effects from the chemo, like loss of smell, taste, neuropathies, daily indigestion, fatigue, etc.) it is always a challenge, but as Susan regularly reminds me, "you're alive." And to that I say, "you're right." And that's that. I'm alive, I'm trying to stay active, I always so grateful for everyone's support. The gratitude for my brother Mike's unselfish act of being my donor only deepens with time. He's had to make multiple trips to Houston, administer shots at home, endure bone pain and for no personal reward. What a brother! With that kind of support how could I not be happy. A good frame of mind for the upcoming holidays.
I wish for you all the same peace and happiness I feel every day.
Dan
Tuesday, November 30, 2010
Thursday, November 11, 2010
Shingles Belong On A Roof
Ever since I was diagnosed I've taken medication (acyclovir) to prevent shingles. Shingles arises from the same virus that causes chicken pox and shares many of its same awful features, including the blistery itchy rash. You only get shingles if you've had chicken pox. The virus then goes dormant in your nerve roots. It can "wake up" in older and immune suppressed people and the virus shows itself as shingles. I've been on automatic refill for this drug at my Target pharmacy. Well, they didn't fill it last month and I didn't notice that I was out, given my 12 or so drugs I take daily. Three weeks of no protection and the opportunistic virus rears its head and bites me in the ass. Unfortunately I have the rash and the significant nerve pain in the most inconvenient of places--my left buttocks! Are you kidding me? I want to scream, "what next" but I'm afraid of what could be next. I'm constantly reminded of John Lennon screaming, "I've got blisters on my fingers," on the Abbey Road albumn. My refrain: I've got blisters on my ass.
Although this can be a very painful, extended infection I have responded well to the high doses of valacyclovir I've been taking since Monday. Keeping the fingers crossed.
Mike has completed his first visit to MD Anderson in preparation for the donor leukocyte infusion in January. Since he is the first one on this protocol he claims he spent one of the days "getting them organized." He says that after his next visit he will have them in shape to handle my visit. He is a Type AAA personality and now I have his blood running in me.
Dan
Although this can be a very painful, extended infection I have responded well to the high doses of valacyclovir I've been taking since Monday. Keeping the fingers crossed.
Mike has completed his first visit to MD Anderson in preparation for the donor leukocyte infusion in January. Since he is the first one on this protocol he claims he spent one of the days "getting them organized." He says that after his next visit he will have them in shape to handle my visit. He is a Type AAA personality and now I have his blood running in me.
Dan
Thursday, October 28, 2010
In The Eye of the Beholder
Starting at the end of the story: I'm sitting in the waiting room at the clinic on Monday waiting for my velcade shot. Nurse Patty, whom I've known for most of my years of treatment comes in, chart in hand, announcing, "Dan? Dan?" I waive my hand and stand up to accompany her into the treatment room. She whispers to me, "oh, I was hoping it wasn't you." I look at her quizically. "What are you talking about? Is something wrong?" I had already received my blood counts for the day and met with the doctor. I was told everything was fine. She says, "you're getting velcade. I'm so sorry." I again respond, "I don't understand. What's wrong." She says, "I thought you were done with treatment." "Oh, you thought I was in remission and have now come out of it?" "Exactly," she says, "you looked so good, and still do. You don't look like you've come out of remission." I told her that I haven't had a day of remission in 5 1/2 years and was quite excited about starting velcade as it might help reduce my residual myeloma before my donor leukocyte infusion (DLI). So, she feels bad and I feel good about my getting treatment. And that's the way it goes.
Much to my surprise, they boosted the velcade with steroids once again. A much smaller dose of both, I'm told, although I certainly felt the effects of both in the past 2 days. I think it only goes to show how strong this stuff is. My body has handled some fairly heavy doses of chemo over the years but now that I've had a chance to clean out for a few months, I can feel its power. That's good I suppose.
Mike starts his injections in a few weeks so we're on track for my DLI at MDA in January. Rifkin finally gave me permission to go to the health club--with a number of restrictions. Still it feels good to be "allowed" to start waking up my muscles. I'm not sure which has a larger circumference, my biceps or my ankles--the proverberial 98 lb. weaking. It's all Big Fella's fault.
Happy Halloween to all.
Dan
Much to my surprise, they boosted the velcade with steroids once again. A much smaller dose of both, I'm told, although I certainly felt the effects of both in the past 2 days. I think it only goes to show how strong this stuff is. My body has handled some fairly heavy doses of chemo over the years but now that I've had a chance to clean out for a few months, I can feel its power. That's good I suppose.
Mike starts his injections in a few weeks so we're on track for my DLI at MDA in January. Rifkin finally gave me permission to go to the health club--with a number of restrictions. Still it feels good to be "allowed" to start waking up my muscles. I'm not sure which has a larger circumference, my biceps or my ankles--the proverberial 98 lb. weaking. It's all Big Fella's fault.
Happy Halloween to all.
Dan
Tuesday, October 12, 2010
Big Fella Unleashed
Those of you who grew up with the Big Fella, Mr. Pete and Fuzz will understand the potential repercussions associated with releasing the Big Fella's cells in me. Although I was told that I could be on anti rejection meds for years, I'm off them after six months. The anti rejection meds are now on the shelf. We'll have to be even more vigilant for signs of GVHD (graph vs. host disease). Although I think the fact that I haven't had any makes it less likely, I'm told that's not the case. Doesn't make sense to me.
My counts are very good. White count 3.2 (in normal range); hemoglobin 11.9 (normal is above 14); and hematocrit 35 (normal is above 40). I don't think my numbers have been that good since I was dianosed.
I'll be starting another chemo drug, velcade, in two weeks, in an effort to bring the myeloma levels down further, or at least to keep them in check.
The vaccine trial I've discussed in previous posts is a randomized trial, meaning about 50% will receive the vaccine and 50% will not. They told me when I was in Houston a couple of weeks ago that I was randomized to be in the control group, i.e., I won't receive the vaccine. I will, however, receive another infusion of Mike's cells in early January. This is called a Donor Leucocyte Infusion (DLI). If I was participating in the vaccine trial I would be getting the vaccine along with the DLI. Mike still has to go to MDA three times between November and January to receive growth hormone shots (don't tell Roger Clemens). He also has to give himself six of these shots during that same time period. The DLI has been known to bring people into remission with other blood cancers, such as leukemia. I'm unsure of its success in myeloma patients. If I don't respond to the DLI within a few months, then I will be eligible to receive the vaccine. So worst case, I'll have to wait an extra 4 or 5 months to get the vaccine. Best case is I won't need it if the DLI brings me into remission.
I really don't know how to describe my feelings about achieving stability after 5 1/2 years of rigorous treatment. Disbelief? Fear that it will all come crashing in? Hope? Bewilderment? Excitement? Caution not to get too hopeful and then be disappointed like so many other times? All of the above and more. I have faced my mortality and prepared myself for the end, endured some very painful episodes, and learned to live with my messed up body--my feet are numb, I have no ass, my hair keeps falling out, I can't hear and I live on imodium (anti diarrhea med). My mind has taken me to some very dark places. I don't feel that I even know how to deal with the possibility of a life without constant treatment. Could I really be one of the lucky ones? But I am one already. That's just a glimpse into my reaction to six months of stabile disease. Perhaps Jerry Garcia said it best, "what a long strange trip it's been."*
*For all you deadheads and aging hippies, the line, "what a long strange trip it's been" came from the Grateful Dead's song "Truckin", and was actually written by Robert Hunter, a friend of Garcia's but not an official member of the band. The line is also the title of the Dead's compilation album released in 1977. Which reminds me maybe I need to once again live by the motto of that era and just keep on truckin.
Dan a/k/a The Fuzz (circa 1970 when I had hair)
My counts are very good. White count 3.2 (in normal range); hemoglobin 11.9 (normal is above 14); and hematocrit 35 (normal is above 40). I don't think my numbers have been that good since I was dianosed.
I'll be starting another chemo drug, velcade, in two weeks, in an effort to bring the myeloma levels down further, or at least to keep them in check.
The vaccine trial I've discussed in previous posts is a randomized trial, meaning about 50% will receive the vaccine and 50% will not. They told me when I was in Houston a couple of weeks ago that I was randomized to be in the control group, i.e., I won't receive the vaccine. I will, however, receive another infusion of Mike's cells in early January. This is called a Donor Leucocyte Infusion (DLI). If I was participating in the vaccine trial I would be getting the vaccine along with the DLI. Mike still has to go to MDA three times between November and January to receive growth hormone shots (don't tell Roger Clemens). He also has to give himself six of these shots during that same time period. The DLI has been known to bring people into remission with other blood cancers, such as leukemia. I'm unsure of its success in myeloma patients. If I don't respond to the DLI within a few months, then I will be eligible to receive the vaccine. So worst case, I'll have to wait an extra 4 or 5 months to get the vaccine. Best case is I won't need it if the DLI brings me into remission.
I really don't know how to describe my feelings about achieving stability after 5 1/2 years of rigorous treatment. Disbelief? Fear that it will all come crashing in? Hope? Bewilderment? Excitement? Caution not to get too hopeful and then be disappointed like so many other times? All of the above and more. I have faced my mortality and prepared myself for the end, endured some very painful episodes, and learned to live with my messed up body--my feet are numb, I have no ass, my hair keeps falling out, I can't hear and I live on imodium (anti diarrhea med). My mind has taken me to some very dark places. I don't feel that I even know how to deal with the possibility of a life without constant treatment. Could I really be one of the lucky ones? But I am one already. That's just a glimpse into my reaction to six months of stabile disease. Perhaps Jerry Garcia said it best, "what a long strange trip it's been."*
*For all you deadheads and aging hippies, the line, "what a long strange trip it's been" came from the Grateful Dead's song "Truckin", and was actually written by Robert Hunter, a friend of Garcia's but not an official member of the band. The line is also the title of the Dead's compilation album released in 1977. Which reminds me maybe I need to once again live by the motto of that era and just keep on truckin.
Dan a/k/a The Fuzz (circa 1970 when I had hair)
Thursday, October 07, 2010
The Incredible Shrinking Man
I forgot to mention, in the last post, the varied, but discouraging, results of my height measurements. I had 2 measurements taken by 2 different nurses within 20 minutes of one another. First it's important to know that each of them could not have been taller than 5 feet, with heels, so how they could see where to place the measuring bar is beyone me. Nonetheless, the first measurement had me at 5'7"; the second at 5'7 1/2". YIKES. Either one is shrinkage. In March 2005 I was 5'11 3/4". In July, after my spine collapsed, I was 5'8". I'm continuing to shrink--but only in stature. In this way, I guess I have many more people to look up to.
Tuesday, October 05, 2010
Time in Texas
Much to say and most of it good. I've spent the better part of the last 2 weeks in Texas. First, at MDA and then a return trip to Tyler for my nephew, Kyle's, wedding. (Kyle is Mike's boy). The wedding was a great celebration. Kyle has married a beautiful young lady, Gennie. All of Mike's siblings (Tom, Kathy and me) made it to the wedding along with our mother. We (Susan, Catherine, Julia and I) spent many vacations with Kyle and his brothers, skiing, canoeing, going to the beach. I enjoyed seeing all these guys now that they've become young men. While some would say it makes you feel old, it made me smile the entire weekend. I so appreciated that I was able to participate in this life event for Kyle and his family. The last five years have made me very grateful to be able to spend time with my family. Tom has a few pictures from the wedding posted on his blog: www.bigfrankdickinson.blogspot.com.
The testing at MDA went without a hitch, although it sure felt like they jammed a number of tests into the 3 days. I met with my doctor at 4 p.m. on Friday and went through everything. The IGGs have dropped a bit to 1800; M protein is 1.5, down from 1.9 in June when I was discarged ; blood counts are good although white count is a bit low; pulminary function is normal and improved from June, bone density is normal, including in my back which is a nice improvement given my numerous compression fractures.
We reviewed the vaccine trial and then they "randomized" me. Do I get the vaccine or am I a part of the control group? Since this is not a blinded trial, they told me--no vaccine, the computer randomly placed me in the control group. This means that I will receive another infusion of Mike's lymphocytes, but this won't include the vaccine being made from my plasma. If I don't respond to Mike's cells, then they will give me the vaccine. So being in the control group means, at worst, I have to wait a few extra months to get the vaccine. Mike will be starting the injection process to prepare his cells in November. I'll get the infusion sometime in January. In the meantime, I have to see my doctor here on a weekly basis, and go to MDA every 3 months.
While I was spending time in Texas, Susan took off for Vermont to spend a few days with close friends who have moved east. Then she headed across the Atlantic to spend some time with our good friends, the Coyles, who live in Paris. To say she needed a break from me would be an understatement. She's spent 8 months over the past 18 months being my 24 hour caregiver. That's enough to drive anyone crazy. A trip to Paris seemed like an appropriate reward for keeping her sanity. We are now both safely back at home.
Our best to everyone.
Love,
Dan
The testing at MDA went without a hitch, although it sure felt like they jammed a number of tests into the 3 days. I met with my doctor at 4 p.m. on Friday and went through everything. The IGGs have dropped a bit to 1800; M protein is 1.5, down from 1.9 in June when I was discarged ; blood counts are good although white count is a bit low; pulminary function is normal and improved from June, bone density is normal, including in my back which is a nice improvement given my numerous compression fractures.
We reviewed the vaccine trial and then they "randomized" me. Do I get the vaccine or am I a part of the control group? Since this is not a blinded trial, they told me--no vaccine, the computer randomly placed me in the control group. This means that I will receive another infusion of Mike's lymphocytes, but this won't include the vaccine being made from my plasma. If I don't respond to Mike's cells, then they will give me the vaccine. So being in the control group means, at worst, I have to wait a few extra months to get the vaccine. Mike will be starting the injection process to prepare his cells in November. I'll get the infusion sometime in January. In the meantime, I have to see my doctor here on a weekly basis, and go to MDA every 3 months.
While I was spending time in Texas, Susan took off for Vermont to spend a few days with close friends who have moved east. Then she headed across the Atlantic to spend some time with our good friends, the Coyles, who live in Paris. To say she needed a break from me would be an understatement. She's spent 8 months over the past 18 months being my 24 hour caregiver. That's enough to drive anyone crazy. A trip to Paris seemed like an appropriate reward for keeping her sanity. We are now both safely back at home.
Our best to everyone.
Love,
Dan
Monday, September 20, 2010
MDA
On the way to MDA on Tuesday for 3 days of testing and a meeting with my doc. This is my 6 month checkup (6 mos. from transplant) and since I have had no significant issues since being discharged in mid June I'm not expecting any surprises. Mike was there last week signing the paperwork to commence the vaccine trial. Once I sign the last documents they'll begin making the vaccine (which will take about 3 months). Then a 2 month period for Mike to receive the vaccine and then I get more of his cells. I'll give more detail once I return next week.
Dan
Dan
Monday, September 06, 2010
MDA, mountains, and a birthday surprise
First the numbers report: IGGs 1909, M protein 1.5. These are essentially the same as they were in late March and June. Stable is the word. White count has come up to 2.8, which is better than it has been in some time. Not sure why, but we'll keep our fingers crossed.
My first return visit to MDA will occur in about 2 weeks. This is my 6 month checkup and will involve 3 or 4 days of testing and a visit with my doctor. They will also review the protocol for the vaccine clinical trial I will be participating in. It will take about 2 to 3 months to make the vaccine. The production will begin once MDA reviews the protocol with me one more time. Then Mike will start his visits to MDA to begin the process of vaccine injections. That will take 2 months. I will join him for the last visit as they will harvest his cells and immediately give them to me. Then I have about a year of visits as they monitor my response. If it is not what they expect they can give me a couple of more injections of Mike's cells. This all has its risks as outlined in the 10 page informed consent. But I don't have any other options, so we go forward.
In the meantime I am trying to have a life. I'm able to ride up to 12 miles on my bike. I wouldn't win any races, but the exercise is no doubt good for me. This is complemented with twice a week physical therapy sessions. I am too embarrassed to admit to the low amount of weight I am working with, buy my therapist assures me I will improve.
My brother Tom and I took a short vacation last week. Now a guy like me who does mostly nothing doesn't need a vacation. But Tom did. So we headed up to a cabin on a mountain lake in the Colorado mountains. The setting was gorgeous. My activity wasn't any greater there, although I did some hiking (walking?). I got enough of a taste that I'm hoping to be able to climb a fourteener next summer (a 14,000 foot high mountain for you non Coloradoans). I will have to see some improvement in my neuropathies, leg strength, and lung capacity, but one must set goals. It'll give me something to work on over the winter. (I had begun "bagging" fourteeners a few years before I was diagnosed and managed to reach the top of 8 peaks. Only 44 left to go!)
And finally, the birthday surprise. Last Friday was my 58th birthday. Julia requested that we stop over at her apartment before we went out for dinner, as she wanted me to open my present before we went to dinner. As we entered her apartment, I saw a large box, wrapped in birthday wrapping paper. I pulled the paper away, lifted the top and saw an old blanket. As I pulled the blanket up, out jumped......Catherine, yelling "Happy Birthday." I can honestly say it is the best surprise of my life. We had a great dinner with the girls and Tom, followed by a relaxing weekend.
We continue to be very grateful for all who have carried us these past years. I feel like I am reaping the benefits this year as I feel better than I have in 2 years.
Dan
My first return visit to MDA will occur in about 2 weeks. This is my 6 month checkup and will involve 3 or 4 days of testing and a visit with my doctor. They will also review the protocol for the vaccine clinical trial I will be participating in. It will take about 2 to 3 months to make the vaccine. The production will begin once MDA reviews the protocol with me one more time. Then Mike will start his visits to MDA to begin the process of vaccine injections. That will take 2 months. I will join him for the last visit as they will harvest his cells and immediately give them to me. Then I have about a year of visits as they monitor my response. If it is not what they expect they can give me a couple of more injections of Mike's cells. This all has its risks as outlined in the 10 page informed consent. But I don't have any other options, so we go forward.
In the meantime I am trying to have a life. I'm able to ride up to 12 miles on my bike. I wouldn't win any races, but the exercise is no doubt good for me. This is complemented with twice a week physical therapy sessions. I am too embarrassed to admit to the low amount of weight I am working with, buy my therapist assures me I will improve.
My brother Tom and I took a short vacation last week. Now a guy like me who does mostly nothing doesn't need a vacation. But Tom did. So we headed up to a cabin on a mountain lake in the Colorado mountains. The setting was gorgeous. My activity wasn't any greater there, although I did some hiking (walking?). I got enough of a taste that I'm hoping to be able to climb a fourteener next summer (a 14,000 foot high mountain for you non Coloradoans). I will have to see some improvement in my neuropathies, leg strength, and lung capacity, but one must set goals. It'll give me something to work on over the winter. (I had begun "bagging" fourteeners a few years before I was diagnosed and managed to reach the top of 8 peaks. Only 44 left to go!)
And finally, the birthday surprise. Last Friday was my 58th birthday. Julia requested that we stop over at her apartment before we went out for dinner, as she wanted me to open my present before we went to dinner. As we entered her apartment, I saw a large box, wrapped in birthday wrapping paper. I pulled the paper away, lifted the top and saw an old blanket. As I pulled the blanket up, out jumped......Catherine, yelling "Happy Birthday." I can honestly say it is the best surprise of my life. We had a great dinner with the girls and Tom, followed by a relaxing weekend.
We continue to be very grateful for all who have carried us these past years. I feel like I am reaping the benefits this year as I feel better than I have in 2 years.
Dan
Wednesday, August 18, 2010
You Can't Make This Stuff Up--Amended
I've been calling my health insurer trying to get some explanation regarding a claim for reimbursement for mileage and some costs for my donor. The claim office says "call the transplant center". The transplant center says, "we don't handle claims, call the claims center." Today I finally get someone who will talk to me. After much cross examination by me I learn that in fact my claim has been processed and a check has been issued. Fine, so I ask, "to whom was the check made payable and where was it sent." The answer: "the check was made payable to 'Transportation Meals and Lodging' and it was sent to [the insurer's] PO Box in California." Naturally I asked if she had a phone number for this 'Transportation Meals and Lodging' fellow as he had my check and I wanted it back. No such luck. But she has initiated an "investigation" to determine just what happened with my claim and check.
I've recontacted the insurer and told them that I'll make this easier for them. I'll just change my name to Mr. Transportation Meals Lodging and they can send the check to me and I'll cash it. Not being one to stand on formality, for all my friends out there, you can just call me Transport for short.
I've recontacted the insurer and told them that I'll make this easier for them. I'll just change my name to Mr. Transportation Meals Lodging and they can send the check to me and I'll cash it. Not being one to stand on formality, for all my friends out there, you can just call me Transport for short.
Monday, August 16, 2010
The nose knows
My counts remain stable. Although still low, my white count has been stable enough these past 2 weeks (2.7 today) that I've avoided the neupogyn shots. Red counts and platelets are also stable. My very low dose revlimid maintenance regime (.5 mg every other day) seems to be working and allowing my counts to recover. They'll check the myeloma levels next week (results in 2 weeks). Health insurance has approved my donor lymphocyte infusion at MD Anderson so Mike and I will be returning to Houston soon for a week or so of workup and yet another infusion of Mike's cells.
Having lost my hearing and my sense of taste, I've now begun to suspect my sense of smell is also impaired. It has taken some time for me to realize this but, I haven't been able to smell the wonderful meals Susan is constantly preparing. And yes, Rifkin confirmed today that all the chemicals I've received can obliterate one's sense of smell. He asssures me, it "usually" returns. He's said the same thing about my neuropathies and rather than improving they are getting worse. We are experimenting with more neurontin but have not yet found the right dosage to relieve the pain. Fortunately I can ride my bike because I find I don't like to walk as my feet start throbbing and tingling after 10 minutes. As for the loss of smell and taste, I find that I am driven to tastes on the edges, like spicey and sweet. Now I know why I told Susan the other day that I was tired of chicken--too bland. So tonight we had hamburgers with jalapenas in them. Yes! Of course this diet complicates my digestive issues.
While I make fun of the loss of smell, it is a serious issue. It presents life challenges, such as not being aware of dangers such as gas leaks, fire, or spoiled food. Having now researched the risks I just realized that I've had this problem for awhile and it seems to be getting worse. Over the past 2 years I eaten some bad meat, which made me quite sick. Julia and Susan chewed me out after each incident for being so stupid. In fact, they have been quite diligent in throwing out any cold cuts that might be old before I can get my hands of them. My awareness is now heightened but I do hope this follows the "usual" course as Rifkin suggested and goes away soon. Not being able to fully appreciate Susan's cooking would be quite a loss.
That being said, I continue to feel and believe that we have turned a corner here. These issues are minor given the minefields we've been through. I can live with this stuff.
To life,
Dan
Having lost my hearing and my sense of taste, I've now begun to suspect my sense of smell is also impaired. It has taken some time for me to realize this but, I haven't been able to smell the wonderful meals Susan is constantly preparing. And yes, Rifkin confirmed today that all the chemicals I've received can obliterate one's sense of smell. He asssures me, it "usually" returns. He's said the same thing about my neuropathies and rather than improving they are getting worse. We are experimenting with more neurontin but have not yet found the right dosage to relieve the pain. Fortunately I can ride my bike because I find I don't like to walk as my feet start throbbing and tingling after 10 minutes. As for the loss of smell and taste, I find that I am driven to tastes on the edges, like spicey and sweet. Now I know why I told Susan the other day that I was tired of chicken--too bland. So tonight we had hamburgers with jalapenas in them. Yes! Of course this diet complicates my digestive issues.
While I make fun of the loss of smell, it is a serious issue. It presents life challenges, such as not being aware of dangers such as gas leaks, fire, or spoiled food. Having now researched the risks I just realized that I've had this problem for awhile and it seems to be getting worse. Over the past 2 years I eaten some bad meat, which made me quite sick. Julia and Susan chewed me out after each incident for being so stupid. In fact, they have been quite diligent in throwing out any cold cuts that might be old before I can get my hands of them. My awareness is now heightened but I do hope this follows the "usual" course as Rifkin suggested and goes away soon. Not being able to fully appreciate Susan's cooking would be quite a loss.
That being said, I continue to feel and believe that we have turned a corner here. These issues are minor given the minefields we've been through. I can live with this stuff.
To life,
Dan
Wednesday, August 04, 2010
That Brain Thing
Mention you're having a brain scan and you get people's attention. I'm not sure if it's out of concern or interest if they'll find anything in this skull. Well, the answer is they have located my brain and it's where it's supposed to be. Second, there is nothing in the scan that would explain my dizziness, vertigo, or loss of hearing. Third, and perhaps most surprisingly, my brain is "normal." How many of you readers have scientific proof your brain is normal? Yeh, I thought so---not many!
I naturally have my own theories as to those ailments: The dizziness and vertigo are due to my drugs, primarily the antifungal drug, which I've had trouble with in the past. The loss of hearing is likely due to the extensive chemo I've had. My doctor even asked what I thought was causing the dizziness and vertigo and of course I told him. I don't know whether he's adopted that diagnosis. As Susan said a few years ago after an exam where I charted my future treatment and my doctor agreed, "the inmates are running the asylum."
But the hearing is improving. The loss has moved from profound on the left and severe on the right to between moderate and severe in both ears. A bit more improvement and I'll probably be able to get along without hearing aids. They were quite surprised by the significant improvement in the left ear, particularly.
White count continues to languish. I now need a neupogyn shot every Monday as I am neutropenic every week when I have my blood checked. Neutropenia is the condition of abnormally low neutrofils, which are the circulating white blood cells that serve as the primary defense against infections by destroying bacteria in the blood. Because mine are so low I have to limit my exposure to crowds, children, pets and other potential sources of bacteria/virus, fungus (like gardening, for example). W.C. Fields had much to say on this subject: "anyone who hates children and animals can't be all bad," and "children should neither be seen nor heard from-----ever again." But I digress. Staying out of the sun, out of the pool, out of the garden, away from crowds, not drinking wine, my god, I might as well be a monk!
But despite these issues and a few more (like these awful neuropathies) I continue to feel like we've turned a corner. My anti rejection meds have been further reduced and I'm back on revlimid, although just every other day since that will cause further reduction of my white count.
Best wishes to all.
Dan
I naturally have my own theories as to those ailments: The dizziness and vertigo are due to my drugs, primarily the antifungal drug, which I've had trouble with in the past. The loss of hearing is likely due to the extensive chemo I've had. My doctor even asked what I thought was causing the dizziness and vertigo and of course I told him. I don't know whether he's adopted that diagnosis. As Susan said a few years ago after an exam where I charted my future treatment and my doctor agreed, "the inmates are running the asylum."
But the hearing is improving. The loss has moved from profound on the left and severe on the right to between moderate and severe in both ears. A bit more improvement and I'll probably be able to get along without hearing aids. They were quite surprised by the significant improvement in the left ear, particularly.
White count continues to languish. I now need a neupogyn shot every Monday as I am neutropenic every week when I have my blood checked. Neutropenia is the condition of abnormally low neutrofils, which are the circulating white blood cells that serve as the primary defense against infections by destroying bacteria in the blood. Because mine are so low I have to limit my exposure to crowds, children, pets and other potential sources of bacteria/virus, fungus (like gardening, for example). W.C. Fields had much to say on this subject: "anyone who hates children and animals can't be all bad," and "children should neither be seen nor heard from-----ever again." But I digress. Staying out of the sun, out of the pool, out of the garden, away from crowds, not drinking wine, my god, I might as well be a monk!
But despite these issues and a few more (like these awful neuropathies) I continue to feel like we've turned a corner. My anti rejection meds have been further reduced and I'm back on revlimid, although just every other day since that will cause further reduction of my white count.
Best wishes to all.
Dan
Monday, July 26, 2010
If I Only Had a Brain
I received an email today titled: "you blog". Not sure if that was a typo or an order. So, to stay on the good saide of J. Sadwith, here goes: First word on the medical front.
Cancer Numbers: M protein 1.5; Iggs 2000. THese are very good numbers for me. M protein varied between 1.7 and 1.9 at MDA. IGGs were aroun 1900. The dropping of the M protein is very encouraging.
My other numbers have been good, EXCEPT for the white count. I don't seem to be able to hold white cells--particularly the neutrofils, which are the really good white cells that fight infection. I am neutropenic (meaning I am prone to picking up bugs/infections). This is due in part to some of the meds I'm on, to the revlimid, and just part of the recovery from a transplant. I'm sure it's also due in part to the fried bone marrow I came home with from Little Rock. You may recall that all of my blood counts were in the toilet and they never fully recovered before my transplant this spring (white count in particular). I got 2 growth shots last week (neupogyn) but, although the white count jumped, it's back down today (2.2). So the plan is to get a weekly shot of neupogyn and to reduce the revlimid to every other day. I'm only on 5 mg of revlimid, which is quite a small dose.
I'm also having dizziness; sometimes fairly significant. Of course I have this hearing/ear problem which could contribute to the vertigo. And I am on a lot of meds which could also be a factor. Anyway, this has earned me a brain scan. Hence the title of this post. Rifkin wants to rule out an infection, which I think is highly unlikely, and also to get a picture of the sinuses and ear canals--which I can understand. I see the ENT (ear, nose throat specialist) tomorrow to retest my hearing and to discuss hearing aids.
But putting aside those issues, the fatigue and the neuropathies in my feet, I'm feeling pretty good. If I could elminate the clinic visits 2 to 3 times a week, and my daily 2 hour naps I might actually be able to put in a full day of doing nothing. Just kidding. I'm mostly feeling that I'm really tired of this 5 year ordeal. I'm feeling worn out. I tried to persuade Rifkin to let me go swimming (since I love to swim), even lining up the pool at a friend of mine's law firm (thanks Jeff, it usually pays to know people in high places). But no go. No swimming anywhere. My bike riding is also limited because I cannot be exposed to sun, even for the shortest time. I have to put sunblock on every morning, even when I'm not planning on being out for long, just in case. (Sun exposure/burn can provoke graft host disease).
Anyway, I just want my life back. Although I have weathered some rough times these past years I have managed not to have much depression. But now, it seems to be creeping in--perhaps, because I'm not feeling like I have to hold it all together in the midst of a crisis--which is how the last 5 years have felt (this is the analysis of another friend, but it makes sense to me). I've never allowed myself to go to this place. I was talking with Rifkin's nurse practitioner today, whom we really love, and she reminded me this is a chronic disease and that's how it's going to be. As she said, "you're going to have a new normal." To which I replied, "that is NOT normal". (incidentally she is moving to Houston to work at MDA. we'll miss her, but will still be able to see her when we're down there). So much for my bitching. I'm sure I'll get over it. If I only could go swimming.
Now on to the social stuff. I made two promises when I left Houston--that I would go back to Dickinson, ND to see my mother and to attend my 40th high school reunion. And to go to NYC to watch Catherine finish the triathalon. I can now confess that I had a good amount of concern about these trips--going through airports, traveling on planes, and being tired. But they were uneventful from the standpoint of being exposed to bugs. The trip to ND was good as it preempted any traveling by my mother, which she finds more taxing as she gets older. Dickinson is a small town and things are a bit slow there, which was fine with me and gave me time to nap every afternoon. A high school classmate and I made a vow at our 30 year reunion that we would see each other at our 40th. At the time it was an easy bet for me and a push for him, as he was wrestling with colorectal cancer. He's had many tough times over the past 10 years, and you know my story. But we made it. As I walked into the opening reception there he was, standing at the door waiting for me. Big hugs, high fives and "we did it," and we went on to celebrate. Don't worry--no alcohol for this guy. My liver is working overtime just getting rid of my medications.
And then there was the triathalon. She did it! Susan and I were at the finish line in Central Park as Catherine ran across. 4,000 swimmers/bikers/runners. She did the entire race without stopping, swimming 1 mile in the Hudson, biking 25 miles and running 6 miles. She looks great. We visited her office at Yahoo! and met many of her friends who were running the triathalon. What a young enthusiastic group. This was a fund raiser for the Leukemia and Lymphoma Society. Yahoo! raised $200,000! Because of their great fundraising the LLS is naming a grant for Yahoo! The firm got to decide which blood cancer the money could go towards and they chose myeloma because of Catherine's moving story of what we've been dealing with these past years. Susan and I got to tell them how much we appreciated their compassion and how much it will mean to research and patient services for people with myeloma. We also got to see Susan's cousin Arlene, her husband Jim, their kids, and their grandkids. It was great but I was exhausted. I came back to Denver after 4 days. Susan stayed an extra week. We had a great time with Catherine and I can't wait to get back there when I have more energy.
Despite my grouching I feel very good about where things stand after this transplant.. We still have some treatment left (the vaccine trial). And as my anti rejection drugs are reduced Mike's cells will hopefully begin a frontal assault on the remaining myeloma. It feels like we may have turned a corner. Maybe that's why I'm feeling low---I want to get back into life but I'm not ready to accept my "new normal." But as Susan always says, "at least you're alive."
So that's the news from last month. I'm glad to be home, in Denver where the weather is mild and I can relax. How's that John? Best to all.
Dan
Cancer Numbers: M protein 1.5; Iggs 2000. THese are very good numbers for me. M protein varied between 1.7 and 1.9 at MDA. IGGs were aroun 1900. The dropping of the M protein is very encouraging.
My other numbers have been good, EXCEPT for the white count. I don't seem to be able to hold white cells--particularly the neutrofils, which are the really good white cells that fight infection. I am neutropenic (meaning I am prone to picking up bugs/infections). This is due in part to some of the meds I'm on, to the revlimid, and just part of the recovery from a transplant. I'm sure it's also due in part to the fried bone marrow I came home with from Little Rock. You may recall that all of my blood counts were in the toilet and they never fully recovered before my transplant this spring (white count in particular). I got 2 growth shots last week (neupogyn) but, although the white count jumped, it's back down today (2.2). So the plan is to get a weekly shot of neupogyn and to reduce the revlimid to every other day. I'm only on 5 mg of revlimid, which is quite a small dose.
I'm also having dizziness; sometimes fairly significant. Of course I have this hearing/ear problem which could contribute to the vertigo. And I am on a lot of meds which could also be a factor. Anyway, this has earned me a brain scan. Hence the title of this post. Rifkin wants to rule out an infection, which I think is highly unlikely, and also to get a picture of the sinuses and ear canals--which I can understand. I see the ENT (ear, nose throat specialist) tomorrow to retest my hearing and to discuss hearing aids.
But putting aside those issues, the fatigue and the neuropathies in my feet, I'm feeling pretty good. If I could elminate the clinic visits 2 to 3 times a week, and my daily 2 hour naps I might actually be able to put in a full day of doing nothing. Just kidding. I'm mostly feeling that I'm really tired of this 5 year ordeal. I'm feeling worn out. I tried to persuade Rifkin to let me go swimming (since I love to swim), even lining up the pool at a friend of mine's law firm (thanks Jeff, it usually pays to know people in high places). But no go. No swimming anywhere. My bike riding is also limited because I cannot be exposed to sun, even for the shortest time. I have to put sunblock on every morning, even when I'm not planning on being out for long, just in case. (Sun exposure/burn can provoke graft host disease).
Anyway, I just want my life back. Although I have weathered some rough times these past years I have managed not to have much depression. But now, it seems to be creeping in--perhaps, because I'm not feeling like I have to hold it all together in the midst of a crisis--which is how the last 5 years have felt (this is the analysis of another friend, but it makes sense to me). I've never allowed myself to go to this place. I was talking with Rifkin's nurse practitioner today, whom we really love, and she reminded me this is a chronic disease and that's how it's going to be. As she said, "you're going to have a new normal." To which I replied, "that is NOT normal". (incidentally she is moving to Houston to work at MDA. we'll miss her, but will still be able to see her when we're down there). So much for my bitching. I'm sure I'll get over it. If I only could go swimming.
Now on to the social stuff. I made two promises when I left Houston--that I would go back to Dickinson, ND to see my mother and to attend my 40th high school reunion. And to go to NYC to watch Catherine finish the triathalon. I can now confess that I had a good amount of concern about these trips--going through airports, traveling on planes, and being tired. But they were uneventful from the standpoint of being exposed to bugs. The trip to ND was good as it preempted any traveling by my mother, which she finds more taxing as she gets older. Dickinson is a small town and things are a bit slow there, which was fine with me and gave me time to nap every afternoon. A high school classmate and I made a vow at our 30 year reunion that we would see each other at our 40th. At the time it was an easy bet for me and a push for him, as he was wrestling with colorectal cancer. He's had many tough times over the past 10 years, and you know my story. But we made it. As I walked into the opening reception there he was, standing at the door waiting for me. Big hugs, high fives and "we did it," and we went on to celebrate. Don't worry--no alcohol for this guy. My liver is working overtime just getting rid of my medications.
And then there was the triathalon. She did it! Susan and I were at the finish line in Central Park as Catherine ran across. 4,000 swimmers/bikers/runners. She did the entire race without stopping, swimming 1 mile in the Hudson, biking 25 miles and running 6 miles. She looks great. We visited her office at Yahoo! and met many of her friends who were running the triathalon. What a young enthusiastic group. This was a fund raiser for the Leukemia and Lymphoma Society. Yahoo! raised $200,000! Because of their great fundraising the LLS is naming a grant for Yahoo! The firm got to decide which blood cancer the money could go towards and they chose myeloma because of Catherine's moving story of what we've been dealing with these past years. Susan and I got to tell them how much we appreciated their compassion and how much it will mean to research and patient services for people with myeloma. We also got to see Susan's cousin Arlene, her husband Jim, their kids, and their grandkids. It was great but I was exhausted. I came back to Denver after 4 days. Susan stayed an extra week. We had a great time with Catherine and I can't wait to get back there when I have more energy.
Despite my grouching I feel very good about where things stand after this transplant.. We still have some treatment left (the vaccine trial). And as my anti rejection drugs are reduced Mike's cells will hopefully begin a frontal assault on the remaining myeloma. It feels like we may have turned a corner. Maybe that's why I'm feeling low---I want to get back into life but I'm not ready to accept my "new normal." But as Susan always says, "at least you're alive."
So that's the news from last month. I'm glad to be home, in Denver where the weather is mild and I can relax. How's that John? Best to all.
Dan
Sunday, June 27, 2010
Say What??
Still reeling from our four month sojourn to Houston, but so very glad to be home. Susan has unpacked everything but my stuff and my items remain strewn about the bedroom. I still have trouble completing projects. I will be seeing Rifkin and having lab work done weekly. So far everything remains stable. I'm ready to have my medications reduced as I feel weighted down from the heavy anti biotics, anti fungals, anti virals, anti rejections, and all the drugs I take to offset the side effects of those drugs.
The latest glitch arises out of my ear drum that ruptured just before we left Houston. Apparently the head cold I've had for the last 6 weeks put too much pressure on the sinuses and blew a hole in my left ear drum. The pain passed but the blood draining from the ear alerted us to a problem bigger than an ear ache. Although I had it checked at MD Anderson, I didn't know the ear drum had burst until we got to Denver, but I'm sure glad I decided not to fly. Anyway, the ear drum is healing, but the hearing loss is significant (or as the ENT doc said, "profound"). My right ear also has "severe" hearing loss. The culprit is likely some of the high dose chemo drugs I've taken, most likely cysplatin. The anti viral, Vfend, also wreaks havoc with my ears and I specifically asked not to be put on it--request denied. I guess one shouldn't be surprised that all these poisons I've injested over the past 5 years would extract a toll on my body. Until I get fitted for my hearing aids, I feel like a character from my childhood, "blowin Joe Ziegler." Yes, "blowin Joe" worked at the local hardware store and walked around constantly blowing from his mouth, to clear his ears. As little kids we thought he was an hysterical character. Now I am him. What goes around comes around.
Going back to Dickinson to see my mother this coming weekend and to attend my 40 year high school reunion. Always nice to see my mom, and I'm excited about seeing many of my friends who visited Denver in 2006 for the famous "Fuzz Fest", as well as a whole host of others who have kept in touch. Hoping my ears can handle the flight and my fatigue doesn't keep me from too many social events. As my brother Tom always counsels me, "take it slow." Susan also deserves a break from me. Talk about testing a relationship these past 5 years!
So, we are gradually reentering life. It's a difficult process, having been out of town for intense treatment for 8 out of the last 18 months. But this time it feels like we are entering a good phase and for that we are very grateful. As a result these posts may become less frequent. I, for one, am tired of the constant (often daily) monitoring of my health. I can't imagine your feelings, other than probably relief, "enough already!"
Love to all,
Dan
The latest glitch arises out of my ear drum that ruptured just before we left Houston. Apparently the head cold I've had for the last 6 weeks put too much pressure on the sinuses and blew a hole in my left ear drum. The pain passed but the blood draining from the ear alerted us to a problem bigger than an ear ache. Although I had it checked at MD Anderson, I didn't know the ear drum had burst until we got to Denver, but I'm sure glad I decided not to fly. Anyway, the ear drum is healing, but the hearing loss is significant (or as the ENT doc said, "profound"). My right ear also has "severe" hearing loss. The culprit is likely some of the high dose chemo drugs I've taken, most likely cysplatin. The anti viral, Vfend, also wreaks havoc with my ears and I specifically asked not to be put on it--request denied. I guess one shouldn't be surprised that all these poisons I've injested over the past 5 years would extract a toll on my body. Until I get fitted for my hearing aids, I feel like a character from my childhood, "blowin Joe Ziegler." Yes, "blowin Joe" worked at the local hardware store and walked around constantly blowing from his mouth, to clear his ears. As little kids we thought he was an hysterical character. Now I am him. What goes around comes around.
Going back to Dickinson to see my mother this coming weekend and to attend my 40 year high school reunion. Always nice to see my mom, and I'm excited about seeing many of my friends who visited Denver in 2006 for the famous "Fuzz Fest", as well as a whole host of others who have kept in touch. Hoping my ears can handle the flight and my fatigue doesn't keep me from too many social events. As my brother Tom always counsels me, "take it slow." Susan also deserves a break from me. Talk about testing a relationship these past 5 years!
So, we are gradually reentering life. It's a difficult process, having been out of town for intense treatment for 8 out of the last 18 months. But this time it feels like we are entering a good phase and for that we are very grateful. As a result these posts may become less frequent. I, for one, am tired of the constant (often daily) monitoring of my health. I can't imagine your feelings, other than probably relief, "enough already!"
Love to all,
Dan
Sunday, June 20, 2010
Home
Finally. We arrived in Denver last night after 2 long days of driving, primarily by Susan. Friday we concluded that my ears were unlikely to clear for awhile and I decided to bite the bullet and suffer the ride and off we went. Many stories, such as driving 40 miles through west Texas in 100 degree heat, hoping to come upon a town with a gas station. Talk about cutting it close. But we're home, a bit stunned from the long absence but grateful for a relatively trouble free transplant (if there can be such a thing) and appreciative of the wonderful Colorado weather. It's a cool 70 degrees today, slight breeze and no noticeable humidity. More later but for now, we're back.
Dan
Dan
Wednesday, June 16, 2010
Temporarily Grounded
Last week my doc said I could likely go home this week and in fact said to go ahead and book a flight on Wednesday (yes, today). I was cautiously optimisitic but not so much so that I posted it. In one week's time I've come down with more of the crud. The visit yesterday was supposed to be the sendoff, but instead it was an examination of all those congested orifices. A little blood oozing from the ear had Susan and me concerned, but it seems its just a broken bloood blister. In my ear? So some heavy duty antibiotics, and antibiotic eye drops for the infection there and the belief is that I'll be ready to go by Saturday. My left ear is completely plugged and I can't hear a thing. I'm not getting on an airplane until that clears as I suspect the pressure changes would put me on the floor in excruciating pain. Everything else seems a go. My blood work remains stable. I had my central line catheter removed from my chest. For the first time in 3 1/2 months I will be able to stand facing the shower. But oh, how clean my back is!!!
I start revlimid tomorrow and they will be enrolling me in the vaccine trial sometime next month. Much to my surprise I learned last week that Dr. Larry Kwak, who is the chairman of the Department of Lymphoma and Myeloma at M.D. Anderson will be overseeing this trial. Dr. Kwak was recently featured in Time Magazine's list of the 100 most influential people in the world due to his career devoted to research on cancer vaccines, including a very successful trial on a vaccine for non Hodgkin's Lymphoma.
The protocol for the trial I will be involved in was written by Dr. Giralt in 2004 and only finally approved this year. This clinical trial is modeled after Dr. Kwak's. As I've said previouly, I believe I will be the first myeloma patient to receive this vaccine. Cutting Edge Science!
So, here's to clearing the ears and descending upon Denver.
We continue to be very grateful for all those who have sustained us over these many month away from home. Most particularly Susan's brother Gary who opened his home to us and let us take over. He made a challenging situation seem so easy and natural. As Susan said the other day, "well at least we know we can all live together." What's she planning? A family commune?
Dan
I start revlimid tomorrow and they will be enrolling me in the vaccine trial sometime next month. Much to my surprise I learned last week that Dr. Larry Kwak, who is the chairman of the Department of Lymphoma and Myeloma at M.D. Anderson will be overseeing this trial. Dr. Kwak was recently featured in Time Magazine's list of the 100 most influential people in the world due to his career devoted to research on cancer vaccines, including a very successful trial on a vaccine for non Hodgkin's Lymphoma.
The protocol for the trial I will be involved in was written by Dr. Giralt in 2004 and only finally approved this year. This clinical trial is modeled after Dr. Kwak's. As I've said previouly, I believe I will be the first myeloma patient to receive this vaccine. Cutting Edge Science!
So, here's to clearing the ears and descending upon Denver.
We continue to be very grateful for all those who have sustained us over these many month away from home. Most particularly Susan's brother Gary who opened his home to us and let us take over. He made a challenging situation seem so easy and natural. As Susan said the other day, "well at least we know we can all live together." What's she planning? A family commune?
Dan
Saturday, June 12, 2010
Final Exams
At some point they will discharge me. Of that I'm sure. In preparation they are putting me through the steps I went through just prior to my admission to the hospital for the transplant. Blood work, blood work and more blood work. An opthamologists exam where no fewer than 4 people peered into my eyes. I can only wonder what deep dark secrets they saw. The exam was intended to look for a couple of problems: changes in vision and graft vs. host disease (gvhd). Neither was present. Similarly my pulmonary function was normal and there is no evidence of gvhd in the lungs. This surprised me given that the chemo regime I received in Little Rock (Super Beam plus) is very hard on the lungs as is all chemo. I figured this 3rd transplant would do my lungs in. Not so. Everyone is quite pleased that I haven't had gvhd as it can be quite nasty. Essentially its Mike's cells attacking any or all of my cells or organs. His cells would see my cells or organs as foreign and go after them. I'm not out of the woods yet as it can hit anytime in about 3 years from transplant. But most often it occurs in the first 100 days, which is why they want to keep me here for that 100 day period.
And then there are the 17 pounds I've lost. Nothing compared to the 50 I lost in Arkansas, but more than I expected. Thankfully Dr. Rifkin beefed me up with steroids before this transplant so I had the weight to lose.
Susan and I had to attend a discharge class to teach us what to do and not to do once I get home. Although we've been through this twice before we have to exercise more caution because this was an allo transplant and I am on immunosuppresants. Much as I want to jump back into the full flow of life I guess I have to proceed slowly.
We see the doctor on Tuesday and should have a better sense of when I can return to Denver.
Love to all,
Dan
And then there are the 17 pounds I've lost. Nothing compared to the 50 I lost in Arkansas, but more than I expected. Thankfully Dr. Rifkin beefed me up with steroids before this transplant so I had the weight to lose.
Susan and I had to attend a discharge class to teach us what to do and not to do once I get home. Although we've been through this twice before we have to exercise more caution because this was an allo transplant and I am on immunosuppresants. Much as I want to jump back into the full flow of life I guess I have to proceed slowly.
We see the doctor on Tuesday and should have a better sense of when I can return to Denver.
Love to all,
Dan
Sunday, June 06, 2010
And On the Third Day He Collapsed
Yes, it seems that reservoir has about a 2 day supply of energy, at best. The game last night was fantastic. A bird's eye view of all the Cubs, even Lou Pinella's scowling face. But the back to back days of partial activity left me exhausted today and my neuropathies throbbing. A day of rest should take care of those issues. It's apparently going to be a long road back. Today this 57 year old is feeling his age, hundreds of doses of chemo, and three transplants. Tomorrow's another day. Onward and upward.
Saturday, June 05, 2010
Reality Check
With all that new found energy I ventured out yesterday. We headed to the Galleria, Houston's upscale shopping center (also known as a mall). I brought Susan along to help craft my new style. You see, I haven't bought any new clothes in about 5 years, since all this nonsense started. Something to do with the fact that my weight has fluctuated 65 pounds, depending upon my intake of steroids and a variety of other factors (like a month in the hospital or other weight losing efforts). Although I must admit that Susan and Julia did buy me a couple of "hospital shirts" at Walmart in Little Rock. Anyway, off we went to find bargains in keeping with the new Dan. That would be the guy with the shiney dome, a struggling goatee, a shorter stature, and numb feet. Well, we've started the transformation and it doesn't include low riding jeans with plaid boxers showing through. It also doesn't include new shoes, as the numb feet make trying on footwear an unpleasant experience. You'll just have to wait to see. The point of this is that after 3.5 hours of shopping my energy disappeared faster than a perfect game in the hands of umpire Jim Joyce. I could hardly make it to the exit to get in the car and come home. Whoa!
But never one to be deterred, today is a new day to test that energy level. Only today (or tonight) Gary and I are headed to an Astros/Cubs baseball game. Prime seating thanks to Gary's connections will find us in the row immediately behind the Cubs dugout. This is all being done with doctor's permission. In fact, when I asked the doctor if I could go to the game, one of the nurses in the room started laughing and said she had been in my hospital room 2 months ago when I was continually pleading for permission to go to the Astros/Rockies game about 3 weeks ago. Permission was denied at that time. In her words, "you never give up." Now I don't know what difference 3 weeks can make but giving me permission only encourages me to continue in my pestering to go home early. Of course, the fact that I now have a different doctor wouldn't be a factor, would it? My attendance won't be without ridicule. Gary has already said we have to leave early to allow time for Chester to walk from the car to the ballpark. (for those who don't understand the reference to Chester, ask someone older than you who used to watch Gunsmoke).
Anyway, I feel that I have more energy but the reserve isn't very deep. Rest assured I'll keep at it.
Go Cubbies,
Dan
But never one to be deterred, today is a new day to test that energy level. Only today (or tonight) Gary and I are headed to an Astros/Cubs baseball game. Prime seating thanks to Gary's connections will find us in the row immediately behind the Cubs dugout. This is all being done with doctor's permission. In fact, when I asked the doctor if I could go to the game, one of the nurses in the room started laughing and said she had been in my hospital room 2 months ago when I was continually pleading for permission to go to the Astros/Rockies game about 3 weeks ago. Permission was denied at that time. In her words, "you never give up." Now I don't know what difference 3 weeks can make but giving me permission only encourages me to continue in my pestering to go home early. Of course, the fact that I now have a different doctor wouldn't be a factor, would it? My attendance won't be without ridicule. Gary has already said we have to leave early to allow time for Chester to walk from the car to the ballpark. (for those who don't understand the reference to Chester, ask someone older than you who used to watch Gunsmoke).
Anyway, I feel that I have more energy but the reserve isn't very deep. Rest assured I'll keep at it.
Go Cubbies,
Dan
Thursday, June 03, 2010
The Awakening
I've been amazed after each transplant at how tired I am. As my earlier posts noted this year I was sleeping 18 hours a day when first discharged from the hospital. It seems that the fatigue is cumulative, i.e., each transplant seems to bring along 30% or more of the fatigue from the prior transplant. So I operate in this fog for weeks/months and don't even realize it. Then boom, I wake up. This week I felt a bit of the awakening. On Tuesday I woke up at 7 a.m. Unheard of for me. And more surprising, I didn't need a nap until late afternoon. Although I slipped one day and slept the better part of the day, generally I've had more energy this week, which is very encouraging.
I used this extra energy to continue to work my "team" for an early release. So far no success, but the nurse practitioner in charge of my care showed some signs of bending today. I'll keep on the pressure.
That being said, I am very grateful for the care I have received. They are very careful here in terms of avoiding unnecessary exposure to infectious environments, adjusting meds, pushing me in physical therapy, etc.
I'll start a maintenance dose of revlimid (5 mg) in the next few days for which I'm very happy. Although Mike's cells have fully engrafted I still have myeloma protein in my blood. I don't fully understand how I can continue to have myeloma when I have someone else's stem cells. But the revlimid should help reduce the M protein and guard against progression of the myeloma. A new clinical trial is showing the effectiveness of revlimid maintenance therapy following transplant. I don't qualify for this trial (I think because I was on revlimid prior to transplant), but that only means I don't get the drug without cost. My insurance will pick up the bulk of the $3800 monthly cost (my copay is around $60 I believe).
I think after this is all over I'm going to start a pharmaceutical company. In addition to the $3800 cost of the revlimid, I have an antibiotic to help prevent pneumonia that costs $3000 and an antifungal that is of similar cost. Those are monthly costs. Fortunately I only have to pay the copay. But that's only 3 drugs and I take about 12 pills a day. Monthly prescription costs probably run around $15,000 a month. Any venture capitalists out there interested in investing in Patterson Pharmaceuticals?
My blood counts and blood chemistry continue to be solid. I need less and less fluids and may soon be discharged from my twice weekly clinic visits, but still confined to Houston. Each milestone is another step towards Denver. Soon enough.
Until then, thank you again to everyone for your love and support.
Dan
I used this extra energy to continue to work my "team" for an early release. So far no success, but the nurse practitioner in charge of my care showed some signs of bending today. I'll keep on the pressure.
That being said, I am very grateful for the care I have received. They are very careful here in terms of avoiding unnecessary exposure to infectious environments, adjusting meds, pushing me in physical therapy, etc.
I'll start a maintenance dose of revlimid (5 mg) in the next few days for which I'm very happy. Although Mike's cells have fully engrafted I still have myeloma protein in my blood. I don't fully understand how I can continue to have myeloma when I have someone else's stem cells. But the revlimid should help reduce the M protein and guard against progression of the myeloma. A new clinical trial is showing the effectiveness of revlimid maintenance therapy following transplant. I don't qualify for this trial (I think because I was on revlimid prior to transplant), but that only means I don't get the drug without cost. My insurance will pick up the bulk of the $3800 monthly cost (my copay is around $60 I believe).
I think after this is all over I'm going to start a pharmaceutical company. In addition to the $3800 cost of the revlimid, I have an antibiotic to help prevent pneumonia that costs $3000 and an antifungal that is of similar cost. Those are monthly costs. Fortunately I only have to pay the copay. But that's only 3 drugs and I take about 12 pills a day. Monthly prescription costs probably run around $15,000 a month. Any venture capitalists out there interested in investing in Patterson Pharmaceuticals?
My blood counts and blood chemistry continue to be solid. I need less and less fluids and may soon be discharged from my twice weekly clinic visits, but still confined to Houston. Each milestone is another step towards Denver. Soon enough.
Until then, thank you again to everyone for your love and support.
Dan
Friday, May 28, 2010
100% Mike
About 30 days ago they tested my blood to see what percent were Mike's cells and what percent were mine. I learned this week that Mike's cells have taken over. Of the cells tested 100% are Mike's. They have run the test again this week and we'll know the results in a few days, but don't expect much of a change, if any. I have no idea how they know one person's blood cell from another's, but they do. This is the goal--to have complete engraftment of Mike's cells. So it looks like we've accomplished that. For the sake of my own reputation I would have preferred to see my cells hold out a little longer instead of just rolling over for the Big Fella, but so be it. This transmogrification also explains some recent quirks in my behavior, to wit, being much more obnoxious, constantly straightening up the house, eating only a vegan diet, a feeling of superiority over other human beings, and an insatiable craving for a drink. No coincidence that these are traits of the Big Fella.
Plans are underway for my return to Denver, although it's still 3 to 4 weeks away. Susan and I have an appointment for a discharge class where we're going to learn everything necessary to keep me healthy once I leave the care of MDA. Having gone through 2 transplants, I suspect we know most of it, but they won't let me leave until we attend the class. I'm also wrapping up my physical therapy, continuing to stun them with my peak performances. And I have to have a complete pulminary workup but that has been delayed due to my cough and para influenza. We had hoped to get away for the long weekend, by going to San Antonio or Austin or to visit Mike, but they scuttled any travel plans---you must stay in the Houston area. Hmph.
That's about it. Not much new. Have a pleasant and fun filled Memorial Day weekend.
Dan
Plans are underway for my return to Denver, although it's still 3 to 4 weeks away. Susan and I have an appointment for a discharge class where we're going to learn everything necessary to keep me healthy once I leave the care of MDA. Having gone through 2 transplants, I suspect we know most of it, but they won't let me leave until we attend the class. I'm also wrapping up my physical therapy, continuing to stun them with my peak performances. And I have to have a complete pulminary workup but that has been delayed due to my cough and para influenza. We had hoped to get away for the long weekend, by going to San Antonio or Austin or to visit Mike, but they scuttled any travel plans---you must stay in the Houston area. Hmph.
That's about it. Not much new. Have a pleasant and fun filled Memorial Day weekend.
Dan
Subscribe to:
Posts (Atom)
