I've Irish blood from both sides of my family. The names of my siblings tells you my parents were proud of their Irish heritage: Mike, Tom, Dan and Kathy. Had our father not died early in his life, we likely would have had a brother or sister named Pat. Although we had many other types of ethnic blood, our mother raised us as Irish and St. Patrick's Day was a day of celebration. We even attended St. Patrick's school (and St. Patrick's Day may even have been a school holiday--I can't remember. But if it wasn't it should have been.) Our mother remarried 21 years ago, on St. Patrick's Day, and of course, married an Irishman: Bob Walton.
Here's hopin a few of these Irish sayings bring a smile to your heart on this most sacred day:
If you're lucky enough to be Irish, then you're lucky enough.
Wherever you go and whatever you do,
May the luck of the Irish be there with you.
May you be poor in misfortunes and rich in blessings.
May you know nothing but happiness from this day forward.
May good luck be your friend in whatever you do.
And may trouble be always a stranger to you.
May flowers always line your path and sunshine light your day.
May songbirds serenade every step along the way.
May a rainbow run beside you in a sky that's always blue.
And may happiness fill your heart each day your whole life through.
It's easy to be pleasant when life flows by like a song,
but the man worth while
is the man who will smile
when everything goes dead wrong.
For the test of the heart is trouble
and it always comes with years,
and the smile that is worth the praises of earth
is the smile that shines through the tears.
Love to all,
Danny Boy
Tuesday, March 16, 2010
Sunday, March 14, 2010
Sunday Night
It's Sunday night. Susan has left for the night and only has the parking garage to deal with before she heads to her brother's house. The parking garage is no small endeavor. It took me 3 days to find the closest garage and then to decipher the "yellow chip" payment system here. This medical center is very impressive. It includes at least 4 hospitals, 2 medical schools, and numerous other medical facilities. A small city in the heart of Houston. I have one of the better rooms; on the 11th floor, with a view of the medical center. I also am able to capture the sunsets from my window. Small perks go a long way when you're looking at a month's stay.
Chemo started on Saturday morning and continues through St. Patrick's day. Will I get green chemo that day? Perhaps not, but the luck of the Irish will surely be with me. I get 4 days of fludorabine; coupled with 2 days of melphalan. Then a day's rest and on March 19th Mike's cells are infused. Mike's 60th birthday is March 24th so we're getting all the high points with this schedule. So far the chemo has gone fairly well, other than the massive amounts of fluids. Let me trace it this way: The chemo hits the kidneys quite hard so to reduce the stress on the kidneys they have me on a constant infusion of saline solution. I'm not moving the fluids fast enough (I gained 7 pounds in one day!); so they give me lasix which unleashes the fluids and keeps me close to home, so to speak. The fluids also "fluidize" my blood--their word, not mine. So my white count and red cells are diluted and thus, very low, resulting in my having 2 transfusions so far. Ah, the wonders of modern medicine.
I've walked a mile each day. Although I'm confined to the 11th floor, 5 times around the floor is a mile. Susan (who walks 5 miles or more each day) makes sure I get my butt out there walking. All visitors are required to wear masks and gloves when coming in a patient's room. The contrast with Arkansas is striking. Whereas in Arkansas all transplants are done on an outpatient basis (requiring daily visits to the clinic), here at M.D. Anderson all transplants are in patient. Different strokes. I am impressed with the focus on hygiene here. It would be interesting to learn whether there are differences in rates of infection based on the different approaches to infection control.
So that's the state of affairs. So far I feel like I'm managing well. I do know that the side effects of the high dose chemo may take a few days or week to set in. But so far so good.
Thank you everyone for your good wishes, thoughts and prayers. They are much appreciated.
Love,
Dan
Chemo started on Saturday morning and continues through St. Patrick's day. Will I get green chemo that day? Perhaps not, but the luck of the Irish will surely be with me. I get 4 days of fludorabine; coupled with 2 days of melphalan. Then a day's rest and on March 19th Mike's cells are infused. Mike's 60th birthday is March 24th so we're getting all the high points with this schedule. So far the chemo has gone fairly well, other than the massive amounts of fluids. Let me trace it this way: The chemo hits the kidneys quite hard so to reduce the stress on the kidneys they have me on a constant infusion of saline solution. I'm not moving the fluids fast enough (I gained 7 pounds in one day!); so they give me lasix which unleashes the fluids and keeps me close to home, so to speak. The fluids also "fluidize" my blood--their word, not mine. So my white count and red cells are diluted and thus, very low, resulting in my having 2 transfusions so far. Ah, the wonders of modern medicine.
I've walked a mile each day. Although I'm confined to the 11th floor, 5 times around the floor is a mile. Susan (who walks 5 miles or more each day) makes sure I get my butt out there walking. All visitors are required to wear masks and gloves when coming in a patient's room. The contrast with Arkansas is striking. Whereas in Arkansas all transplants are done on an outpatient basis (requiring daily visits to the clinic), here at M.D. Anderson all transplants are in patient. Different strokes. I am impressed with the focus on hygiene here. It would be interesting to learn whether there are differences in rates of infection based on the different approaches to infection control.
So that's the state of affairs. So far I feel like I'm managing well. I do know that the side effects of the high dose chemo may take a few days or week to set in. But so far so good.
Thank you everyone for your good wishes, thoughts and prayers. They are much appreciated.
Love,
Dan
Thursday, March 11, 2010
Hospital or Airline?
I was deboarded on Wednesday but have yet to get on a new flight, so to speak. Received a call this evening from admissions: we regret to inform you that your admission has been rescheduled for tomorrow. OK, I'm not complaining. I suspect that had I not demanded that I be put on the transplant floor I would be in the hospital by now, being attended by some nurse who didn't know the difference from myeloma and my aroma. Once again, we dealt with this delay by indulging ourselves in yet another "fine" meal. Susan says we can't afford any more cancellations. I, on the other hand, am not in any hurry. In my experience, fine dining will always trump chemotherapy.
Dan
Dan
A Welcome Delay
All ready to check in last night, merely awaiting the call from admissions. Instead Dr. Giralt calls. There is one insurance approval that has not come through, they can't reach anyone at the insurance company, and he doesn't want to admit me and then have the insurance company disapprove. So, we get another evening off, which we once again use to go out and enjoy another fine meal. I expect I'll be admitted today, as insurance approval has come through.
I can't resist using this little glitch for a political "teaching" moment. I tend to scream everytime I hear those who are opposed to health care reform proclaim they don't want the government getting between them and their doctors. Who are they kidding? Under the current system there is a big old profit seeking insurance company sitting smack dab in between each of us and our doctors. Most medical procedures deemed necessary by our licensed and regulated doctors must nonetheless be approved by some unlicensed and unregulated insurance adjustor before the patient can receive the treatment. If this system isn't backwards then the sun doesn't rise in the east. I could not list the number of times in the last 5 years that I've had treatments denied or delayed, awaiting approval from some lesser trained and much less knowledgeable person, who isn't licensed to practice medicine but is allowed not only to second guess but to overrule my doctor's recommendations.
Enough. I'll let you know how the accomodations are once we're checked in.
Dan
I can't resist using this little glitch for a political "teaching" moment. I tend to scream everytime I hear those who are opposed to health care reform proclaim they don't want the government getting between them and their doctors. Who are they kidding? Under the current system there is a big old profit seeking insurance company sitting smack dab in between each of us and our doctors. Most medical procedures deemed necessary by our licensed and regulated doctors must nonetheless be approved by some unlicensed and unregulated insurance adjustor before the patient can receive the treatment. If this system isn't backwards then the sun doesn't rise in the east. I could not list the number of times in the last 5 years that I've had treatments denied or delayed, awaiting approval from some lesser trained and much less knowledgeable person, who isn't licensed to practice medicine but is allowed not only to second guess but to overrule my doctor's recommendations.
Enough. I'll let you know how the accomodations are once we're checked in.
Dan
Tuesday, March 09, 2010
M.D. Anderson
And we're off. Susan and I had a fine dinner out tonight. Tomorrow is check-in. Third time's the charm.
Love you all,
Dan
Love you all,
Dan
Thursday, March 04, 2010
Crossing the T's and Dotting the i's
We've finished the testing, met with Dr. Giralt and are awaiting hospital admission next Wednesday. The tests provided a bit of good news, i.e., nothing has worsened and the bone marrow is in much better shape than when I was here in October. My plasma cells were at 87% in October and the M protein was 3.7. Plasma is now 28% and M Protein 1.6. (Normal plasma cell levels are about 5%; M protein 0.) Dr. G was extremely pleased with my progress over the past 5 months, and commented twice during the half hour that I looked great. He also offered that when he saw me in October he wasn't at all confident the revlimid could put a dent in the myeloma.
He reviewed other options following transplant, including his plan to put me on either revlimid or pomalidomide 90 days after transplant. He strongly prefers pomalidomide but isn't sure it will be available for this application (post transplant) at that time, but if it is, then that is the course they'll follow. We discussed a few other options. This was quite a change from our meeting in October when I felt I had almost run out of options. Not to minimize the risks of this transplant, but they are thinking and planning beyond this transplant; and they actuallyhave some options available. Nice!
So I've got 5 more days before I'm locked up in the hospital for a month. In years past this might have been reason for a weekend of celebration, but not so anymore. But the weather in Houston has been very nice, almost springlike, so we'll probably try to spend some time outside.
That's it for now.
Love to all,
D
He reviewed other options following transplant, including his plan to put me on either revlimid or pomalidomide 90 days after transplant. He strongly prefers pomalidomide but isn't sure it will be available for this application (post transplant) at that time, but if it is, then that is the course they'll follow. We discussed a few other options. This was quite a change from our meeting in October when I felt I had almost run out of options. Not to minimize the risks of this transplant, but they are thinking and planning beyond this transplant; and they actuallyhave some options available. Nice!
So I've got 5 more days before I'm locked up in the hospital for a month. In years past this might have been reason for a weekend of celebration, but not so anymore. But the weather in Houston has been very nice, almost springlike, so we'll probably try to spend some time outside.
That's it for now.
Love to all,
D
Monday, March 01, 2010
Testing Has Begun
The day began at 7 a.m. by checking in at M.D. Anderson. A few noninvasive tests, some blood work, and three "consults" to review the transplant process. A process we've been through twice, so it seemed unnecessary---particularly the meeting with the social worker. But they have their procedures, so we tolerated all those questions that we've answered many times over the last 5 years.
We dropped Julia off at the airport this afternoon and she reports that she has arrived safely in Denver. She was of great assistance in helping to get Susan and me moved in to her brother's house. My mother always told me that when staying with someone, I should always remember that fish start to smell after 3 days. I told Gary that if fish start to smell after 3 days, they must be decomposing and full of maggots in 4 months. The poor guy. He's lived alone for the past 35 years and now Susan and I move in. Talk about shock! He's most generous and accomodating. I'm the one who's sensitive about this. Susan, on the other hand, merely says, "he's my brother. Of course we'd stay with him."
Mike left me more than 6 million stem cells last week. (they need about 4 or 5 million). He had to spend a week down here, giving himself neupogyn shots and then spending 2 days in the recliner as they harvested his cells. His output was much less than I've seen in many of the autologous transplants (I spit out 22 million prior to my first transplant) but I don't know if that has something to do with other drugs that are administered when they are harvesting stem cells from the patient himself. I guess I need to get on google and see what I can learn.
Tomorrow is a full day of bone surveys, scans, and biopsies. A bit more rigorous than today. Wednesday is the same and then it tails off by the end of the week. Then I will be admitted to the hospital next Wednesday for the chemo and transplant.
Much love to all,
Dan
We dropped Julia off at the airport this afternoon and she reports that she has arrived safely in Denver. She was of great assistance in helping to get Susan and me moved in to her brother's house. My mother always told me that when staying with someone, I should always remember that fish start to smell after 3 days. I told Gary that if fish start to smell after 3 days, they must be decomposing and full of maggots in 4 months. The poor guy. He's lived alone for the past 35 years and now Susan and I move in. Talk about shock! He's most generous and accomodating. I'm the one who's sensitive about this. Susan, on the other hand, merely says, "he's my brother. Of course we'd stay with him."
Mike left me more than 6 million stem cells last week. (they need about 4 or 5 million). He had to spend a week down here, giving himself neupogyn shots and then spending 2 days in the recliner as they harvested his cells. His output was much less than I've seen in many of the autologous transplants (I spit out 22 million prior to my first transplant) but I don't know if that has something to do with other drugs that are administered when they are harvesting stem cells from the patient himself. I guess I need to get on google and see what I can learn.
Tomorrow is a full day of bone surveys, scans, and biopsies. A bit more rigorous than today. Wednesday is the same and then it tails off by the end of the week. Then I will be admitted to the hospital next Wednesday for the chemo and transplant.
Much love to all,
Dan
Monday, February 15, 2010
Still on Track
Good visit with Rifkin today. Everything is a go for Houston. He is very pleased with my recovery, and probably a bit surprised, as I was quite compromised when I first arrived back from Little Rock. The bone marrow still doesn't work quite right, but I'll leave that problem to Mike's cells. IGGs are at 1875 (normal being 600 to 1600). M spike is stable at 1.4. White count is a bit low at 2.2 but he is unconcerned about that. One more visit with him next Monday, then we're off to M.D. Anderson.
Sunday, February 14, 2010
The past 2 weeks have presented yet a couple of more challenges. A cough/cold/wheeze lead to an early discontinuation of revlimid. Rifkin cancelled my last week of revlimid to allow my lungs to recover. The CT scan brought some relief, as it showed no pneumonia. But my immune system is ill equipped to deal with cold symptoms, etc. It just takes about twice as long to rid myself of the crud. During this fight with the crud (I get it every February), I got hit with the worst of the steroid withdrawal, including the shakes (DT's?). This has not been fun, but today it feels like I'm come through the worst. I've got one week left of low level steroids (10 mg. every other day). So, enough of my complaints. Everything is a go at M.D. Anderson. My brother has been through a couple of days of testing and they'll harvest his stem cells within a week to 10 days. Susan and Julia will depart in Susan's little Subaru on Feb. 26th and I'll follow by air the next day. Testing starts March 1.
Catherine will start training for the NYC triathalon in about a week. She is doing this to raise money for the Leukemia Society. Check out her web page: http://pages.teamintraining.org/nyc/nyctri10/catherine.
I'll try to provide one more post before we start our sojourn to the south.
Love to all,
Dan
Catherine will start training for the NYC triathalon in about a week. She is doing this to raise money for the Leukemia Society. Check out her web page: http://pages.teamintraining.org/nyc/nyctri10/catherine.
I'll try to provide one more post before we start our sojourn to the south.
Love to all,
Dan
Tuesday, February 02, 2010
We Have a Date
I've begun the 2nd week of my last cycle of revlimid. I had a 2 week break due to low white count, which brought concern about whether the IGGs would start an upward trend. Fortunately, the steroids apparently held them in check. IGGs at 2021. M spike went up from 1.4 to 1.5. Rifkin says its time to go to Houston. We are tailing off on the steroids (decreasing the dosage by 10 mg. each week). Brother Mike will be in Houston this week for his first round of tests. Mainly blood work I think. Then back in 2 weeks for a fully week of shots and stem cell harvesting.
My testing begins March 1; admitted to the hospital March 10 and the three drug chemo is administered over the next couple of days. Mike's cells will be transplanted on March 15 and the metamorphosis begins. YIKES!!!! I thought human cloning was illegal. Or maybe this will qualify as identity theft. And the idea of two Mike Patterson's wandering around this earth is likely to cause some people to run for the hills. I told Mike I would appreciate receiving some of his hair cells, as I seem to have lost most of my hair. So there you have it.
Susan and Julia will once again be hitting the road in the days before March 1. I will once again be taking the easy road and catching a flight to Houston, all to meet at Susan's brother, Gary's house. And they complain that I never take them anywhere!
I sit in disbelief at our experience over the last 5 years (On March 23rd it will be 5 years since diagnosis) and have even greater difficulty believing this will be my 3rd stem cell transplant.
While I feel more tired going into this than ever before, I know I have a month to pull myself together, brace for the inevitable, and walk through the fire once again. Susan is in the same place as I am. Not a day has gone by, however, without our being deeply grateful for all the extraordinary people in our lives. We continue to feel your love and support and we know we will endure.
Onward and upward,
Dan
My testing begins March 1; admitted to the hospital March 10 and the three drug chemo is administered over the next couple of days. Mike's cells will be transplanted on March 15 and the metamorphosis begins. YIKES!!!! I thought human cloning was illegal. Or maybe this will qualify as identity theft. And the idea of two Mike Patterson's wandering around this earth is likely to cause some people to run for the hills. I told Mike I would appreciate receiving some of his hair cells, as I seem to have lost most of my hair. So there you have it.
Susan and Julia will once again be hitting the road in the days before March 1. I will once again be taking the easy road and catching a flight to Houston, all to meet at Susan's brother, Gary's house. And they complain that I never take them anywhere!
I sit in disbelief at our experience over the last 5 years (On March 23rd it will be 5 years since diagnosis) and have even greater difficulty believing this will be my 3rd stem cell transplant.
While I feel more tired going into this than ever before, I know I have a month to pull myself together, brace for the inevitable, and walk through the fire once again. Susan is in the same place as I am. Not a day has gone by, however, without our being deeply grateful for all the extraordinary people in our lives. We continue to feel your love and support and we know we will endure.
Onward and upward,
Dan
Monday, January 25, 2010
Bound for Houston
Last week's white count, even after three neupogyn shots, only rose to 3.7, so resumption of the revlimid was delayed until my lab work today. Blood count today was good. White count holding at 3.8, platelets at 94, hemoglobin 10, and hematocrit 30. Good enough to go through another cycle of revlimid (3 weeks). After that, I'll have 3 weeks to wean off the prednisone. Sometime during that 3 weeks we'll be moving to Houston to get tested and prepared for the transplant from brother Mike.
I'll be in the hospital at M.D. Anderson for a month for the transplant and recovery. They'll give me immunosuppressants so I don't get in too big of a fight with my brother's stem cells, then they start the monitoring to see how I'm handling the change from my immune system to his. (I'll even end up with his blood type, rather than mine). Then I'll be "confined" to Houston for 3 months in case I pick up any bugs. We'll be staying with Susan's brother during that time. If I get sick, even so much as a mild cold, I'll have to go to the hospital immediately, as I understand it. I've committed to go to my 40th high school reunion back in Dickinson, over the 4th of July, so I'm planning on departing Houston in late June.
I had to have one final discussion with Rifkin about other options. In his view there aren't any other options. He and Dr. Giralt see this as the opportune time to do the transplant. More cycles of revlimid are not an option due to the risk of increased toxicity and lack of eligibility for the transplant. But, we have accomplished more than what was expected by either Rifkin or Giralt with the revlimid and prednisone. As Rifkin described it, "you'll be buffed and polished and ready for transplant after this next cycle." So here we go. Just call me Mr. Florsheim.
My brother Tom visited over this past weekend. We had a great time, including working through his list of home repair jobs. The topper was the scrabble game on Saturday night, which I pulled out on the last play of the game. A come from behind victory, not unlike the one the Indianapolis Colts pulled out on Sunday.
Thank you everyone for hanging in there with us.
Love,
Dan
I'll be in the hospital at M.D. Anderson for a month for the transplant and recovery. They'll give me immunosuppressants so I don't get in too big of a fight with my brother's stem cells, then they start the monitoring to see how I'm handling the change from my immune system to his. (I'll even end up with his blood type, rather than mine). Then I'll be "confined" to Houston for 3 months in case I pick up any bugs. We'll be staying with Susan's brother during that time. If I get sick, even so much as a mild cold, I'll have to go to the hospital immediately, as I understand it. I've committed to go to my 40th high school reunion back in Dickinson, over the 4th of July, so I'm planning on departing Houston in late June.
I had to have one final discussion with Rifkin about other options. In his view there aren't any other options. He and Dr. Giralt see this as the opportune time to do the transplant. More cycles of revlimid are not an option due to the risk of increased toxicity and lack of eligibility for the transplant. But, we have accomplished more than what was expected by either Rifkin or Giralt with the revlimid and prednisone. As Rifkin described it, "you'll be buffed and polished and ready for transplant after this next cycle." So here we go. Just call me Mr. Florsheim.
My brother Tom visited over this past weekend. We had a great time, including working through his list of home repair jobs. The topper was the scrabble game on Saturday night, which I pulled out on the last play of the game. A come from behind victory, not unlike the one the Indianapolis Colts pulled out on Sunday.
Thank you everyone for hanging in there with us.
Love,
Dan
Monday, January 18, 2010
Struggling White Count Leads to Hiding in Basement
First, let me correct a typo in my previous post. My white count as of that date was 1.8, not .8. It remains there. "So what", is the likely response from most of you. But the MM patients who read this will be tuned in to those numbers. My neutrophils were .8 and are now .6. (normal is 1.5 to 7) Neutrophils are the best of the white cells. So, rather than start cycle 3 of revlimid I got a neupogyn shot today to stimulate white cell production. I'm lined up for shots for the next 2 days, then we'll see if I'm ready to start the revlimid. In the meantime I've holed up in the basement to watch sports, westerns and comedies on TV in order to avoid exposure to any nasty bugs.
Given my response to the revlimid and the dipping white count, this could be my last cycle. Then, we'll be on to M.D. Anderson. It is possible I'll go through 2 more cycles, but I'm thinking that's unlikely. IGGs are now at 2000 (down from 4600 at the start) (normal is 700 to 1600) and M protein is now 1.4 (down from 3.2 before we started the steroids this summer). Before the transplant I'll have to go through another week of testing to restage my disease. I also have to be off the revlimid and steroids for 3 weeks or so, so the actual transplant may not commence until March. We're also starting the scheduling for Mike to go through testing and then harvesting of his cells.
Mentally I know Susan and I aren't ready for another 4 months of "treatment" away from home. But then, we weren't ready for any of this, so I guess we'll just pack it up and move on down to Houston for awhile. Her brother Gary is being so nice in his preparations for our "visit", including purchasing a recliner for my comfort. I call him regularly to remind him that he still has time to get out of town before we arrive. What would we do without our families?
Speaking of which, Catherine is threatening to sign up for the Yahoo triathalon team to raise funds for the Leukemia Society. Talk about inspiration! I'll plan on being in NYC in July just to see her finish. Don't let this post put any pressure on you, Catherine. But we're all waiting for your final answer. And since I'm not on facebook you'll have to post that response here.
Both Rifkin and Giralt continue to be very pleased with my response to the revlimid, as are Susan and I. As an aside, I just picked up my refill of 21 days of revlimid. A mere $8,000, which my insurance company and I split. Nothing like meeting my high deductible with one prescription. That's all for now.
Dan
Given my response to the revlimid and the dipping white count, this could be my last cycle. Then, we'll be on to M.D. Anderson. It is possible I'll go through 2 more cycles, but I'm thinking that's unlikely. IGGs are now at 2000 (down from 4600 at the start) (normal is 700 to 1600) and M protein is now 1.4 (down from 3.2 before we started the steroids this summer). Before the transplant I'll have to go through another week of testing to restage my disease. I also have to be off the revlimid and steroids for 3 weeks or so, so the actual transplant may not commence until March. We're also starting the scheduling for Mike to go through testing and then harvesting of his cells.
Mentally I know Susan and I aren't ready for another 4 months of "treatment" away from home. But then, we weren't ready for any of this, so I guess we'll just pack it up and move on down to Houston for awhile. Her brother Gary is being so nice in his preparations for our "visit", including purchasing a recliner for my comfort. I call him regularly to remind him that he still has time to get out of town before we arrive. What would we do without our families?
Speaking of which, Catherine is threatening to sign up for the Yahoo triathalon team to raise funds for the Leukemia Society. Talk about inspiration! I'll plan on being in NYC in July just to see her finish. Don't let this post put any pressure on you, Catherine. But we're all waiting for your final answer. And since I'm not on facebook you'll have to post that response here.
Both Rifkin and Giralt continue to be very pleased with my response to the revlimid, as are Susan and I. As an aside, I just picked up my refill of 21 days of revlimid. A mere $8,000, which my insurance company and I split. Nothing like meeting my high deductible with one prescription. That's all for now.
Dan
Friday, January 15, 2010
Donor Selection
M.D. Anderson has preliminarily selected brother Mike as the donor. The criteria seemed a bit ambiguous to me so I don't think there was one overwhelming factor that dictated the decision. Tom thinks its favoritism towards a fellow Texan. He still has to pass the tests to make sure he is fit to be a donor. I've told Tom to stay in the wings in case we need a last minute replacement. Timing is still uncertain but we could be gearing up within a couple of months.
Revlimid continues to do its job. IGGs have dipped to 2000. The revlimid also hammers my white count (.8 on Monday) so I am still hiding from crowds, avoiding shaking hands, etc. Could this treatment turn me into an anti-social introvert? Unlikely.
I am so impressed by Rifkin's care of me since returning from Arkansas. He has literally brought me back from the edge. Although my bone marrow isn't working like it should, at least it's working to some degree. And he and his friends at M.D. Anderson and Mayo have found a regime to bring the cancer levels down and open the door for the transplant. We had our doubts this summer but, once again, we have a path forward. What a life!
Much love to all,
Dan
Revlimid continues to do its job. IGGs have dipped to 2000. The revlimid also hammers my white count (.8 on Monday) so I am still hiding from crowds, avoiding shaking hands, etc. Could this treatment turn me into an anti-social introvert? Unlikely.
I am so impressed by Rifkin's care of me since returning from Arkansas. He has literally brought me back from the edge. Although my bone marrow isn't working like it should, at least it's working to some degree. And he and his friends at M.D. Anderson and Mayo have found a regime to bring the cancer levels down and open the door for the transplant. We had our doubts this summer but, once again, we have a path forward. What a life!
Much love to all,
Dan
Saturday, January 02, 2010
The Blue Moon
Perhaps you had the good fortune to see the beautiful full moon two nights ago. This was the second full moon in a month and thereby earned the title of "blue moon". This occurs about every 2 to 3 years. The next time the blue moon will fall on New Year's Eve, however, is December 31, 2028. The moon reminded me of one of my favorite songs by Van Morrison. Part of the lyrics are set forth below:
Once every once in a while
Something comes along that feels just right
Once every once in a while
Just like switching on an electric light
And sometimes you try till you're blue in the face
But when you get that feeling
Nothing's going to take its place
Once in a blue moon
There's a thing called happiness
It happens when you're in
A state of natural grace
When the wind is blowing
All around the fence
I get that happy feeling
Things start making sense
All just feels so lucky
That you just can't go wrong
Once in a blue moon
Someone like you comes along
Once in a blue moon
There's a thing called happiness
It happens when you're in
A state of natural grace.
It's a great tune. And I wish for all of my friends that you find happiness more frequently than every blue moon. It's there for the taking, this I know. Much love to all of you for the new year.
Dan
Once every once in a while
Something comes along that feels just right
Once every once in a while
Just like switching on an electric light
And sometimes you try till you're blue in the face
But when you get that feeling
Nothing's going to take its place
Once in a blue moon
There's a thing called happiness
It happens when you're in
A state of natural grace
When the wind is blowing
All around the fence
I get that happy feeling
Things start making sense
All just feels so lucky
That you just can't go wrong
Once in a blue moon
Someone like you comes along
Once in a blue moon
There's a thing called happiness
It happens when you're in
A state of natural grace.
It's a great tune. And I wish for all of my friends that you find happiness more frequently than every blue moon. It's there for the taking, this I know. Much love to all of you for the new year.
Dan
Monday, December 28, 2009
The "Official" Cycle 1 Numbers
Although blood is drawn weekly, the blood work deemed most important is that which is drawn the first day of the first week of each cycle. So, for the first cycle of revlimid here are the numbers: IGGs 2300 (down from 4600); M protein 1.7 (down from 3.0). We are all quite encouraged by this response. Other data is also good. White count is back up to 2.6 from last week's 1.9. Platelets 88 (OK for me). Creatinine is down to 1.1--in normal range again, down from 1.6.
I continue to have trouble with the revlimid, such as nausea, vomiting, headache, and fever. These seem to occur during the first week of the cycle and then decrease. It all feels manageable in light of the Arkansas experience as well as the progress being made.
I asked Rifkin today how I could have such a good response to one drug, when 15 high dose drugs were basically ineffective. His response: "That just shows you how much we don't understand about myeloma." I also asked if my response was such that I might have other options, rather than another transplant. The answer: "No." He explained that he hopes to have my myeloma low and stable enough such that I will be a perfect candidate for the transplant. Trying some other treatment which might not work could put me in a position where I would no longer be a candidate for transplant and then I would be out of options. I was close to that upon returning from Arkansas when my red cells, white cells, and platelets were all so low. If they hadn't recovered to the degree they have, I couldn't have a transplant.
I'll probably go through one or two more cycles, then we'll be off to M.D. Anderson. Still no word on which brother gets the privilege of being my donor. Happy New Year everyone. 2010 is just around the corner.
Dan
I continue to have trouble with the revlimid, such as nausea, vomiting, headache, and fever. These seem to occur during the first week of the cycle and then decrease. It all feels manageable in light of the Arkansas experience as well as the progress being made.
I asked Rifkin today how I could have such a good response to one drug, when 15 high dose drugs were basically ineffective. His response: "That just shows you how much we don't understand about myeloma." I also asked if my response was such that I might have other options, rather than another transplant. The answer: "No." He explained that he hopes to have my myeloma low and stable enough such that I will be a perfect candidate for the transplant. Trying some other treatment which might not work could put me in a position where I would no longer be a candidate for transplant and then I would be out of options. I was close to that upon returning from Arkansas when my red cells, white cells, and platelets were all so low. If they hadn't recovered to the degree they have, I couldn't have a transplant.
I'll probably go through one or two more cycles, then we'll be off to M.D. Anderson. Still no word on which brother gets the privilege of being my donor. Happy New Year everyone. 2010 is just around the corner.
Dan
Monday, December 21, 2009
Stepping Back From The Brink
I've often said that facing the ups, downs, and uncertainties of this disease is like being faced with trying a losing case. When forced to try a case in court that Iwould prefer to have settled, the number one rule I followed was "never let 'em see you sweat," and you never know what might happen. Since coming home from Arkansas with my dysfunctional bone marrow, transfusions and growth shots (neupogyn) every 2 to 3 days, my blood counts in the toilet, and my cancer levels on the rise, I've had to remind myself of that rule numerous times. So today was, in some ways, as sweet as a favorable jury verdict:
After one cycle of revlimid (3 weeks), the IGGs have dropped from 4600 to 2700. This is tremendous. I also find this response most curious. The super BEAM plus chemo I received prior to transplant in Arkansas consisted of 9 drugs: Carmustine (BCNU), etoposide, Cytarabine, melphalan, thalidomide, velcade, dexamethasone, rapamycin (immunosuppressant) and one more drug, which escapes me; all given at maximum dosage over a 5 day period. The result was a drop in IGGs to 2500, which lasted a week or two at most and then they started climbing again, and a drop in white count to 00, which took me months to bring back. The Super BEAM plus was administered after I had already been given 5 days of 7 drugs, also in high dose, followed by 14 days of low dose chemo with only 3 drugs. So I invite all you more biologically/pharmacologically inclined readers to explain to me how a relatively low dose of revlimid, coupled with a moderate to heavy dose of prednisone can achieve results comparable to those 15 toxins I received in Arkansas.
After one cycle of revlimid (3 weeks), the IGGs have dropped from 4600 to 2700. This is tremendous. I also find this response most curious. The super BEAM plus chemo I received prior to transplant in Arkansas consisted of 9 drugs: Carmustine (BCNU), etoposide, Cytarabine, melphalan, thalidomide, velcade, dexamethasone, rapamycin (immunosuppressant) and one more drug, which escapes me; all given at maximum dosage over a 5 day period. The result was a drop in IGGs to 2500, which lasted a week or two at most and then they started climbing again, and a drop in white count to 00, which took me months to bring back. The Super BEAM plus was administered after I had already been given 5 days of 7 drugs, also in high dose, followed by 14 days of low dose chemo with only 3 drugs. So I invite all you more biologically/pharmacologically inclined readers to explain to me how a relatively low dose of revlimid, coupled with a moderate to heavy dose of prednisone can achieve results comparable to those 15 toxins I received in Arkansas.
So what does this all mean vis-a-vis future treatment? Assuming some continued response, which Rifkin seems to expect, my cancer levels are expected to go down to a level that will increase the likelihood of some success with the transplant from one of my brothers. I told Rifkin today I wanted to drive this myeloma into the basement with this revlimid therapy, before the transplant, in order to reduce the amount of disease the new cells would have to eradicate. The complicating factor is my white count. It dropped to 1900 (1.9) and my neutrophils (the really good white cells) are at 1000. I'm officially neutropenic (abnormally low white cell count). Rifkin wants to continue the revlimid therapy at the current dosage (15mg) in light of the good response, but warned me to stay away from crowds, wash hands, stay away from sick people, etc. etc. I think that's why I get sent to the hospital whenever something like pneumonia shows up. Counts will be checked in a week.
Other blood work looks good and the creatinine (indicates kidney function) is back to 1.3 (high end of normal).
Still no word on which brother's stem cells will be used, but momentum seems to be building for that cage fight. Trash talking between the bros has already started.
Best to all of you.
Dan
Thursday, December 17, 2009
Stem Cell Cagefighting for Christmas
Not surprisingly, my two brothers continue to be complete HLA matches, i.e., they match the 10 identifiable antigens (HLA=human leukocyte antigen). These antigens regulate how the body recognizes and rejects foreign tissue. The doctors have not yet decided which brother's stem cells to use. Once again I suggested Mike and Tom "take it out back" and I'll take the stem cells from the winner. Rifkin's assistant was initially appalled, then realized I was joking. Or was I? Perhaps a stem cell cagefight for the holidays. We could make it a fundraiser and send the money to stem cell research. Once again it seems I'm getting my brothers into a fight, just like I used to do growing up in ND.
Blood work this week was good for me. White count 2.7, which is good for me when I'm on chemo; hemoglobin 10.2, hematocrit 32 (quite good for me on therapy) and platelets 71--stable. No word on IGGs. They'll be measured this Monday when I start cycle 2, results probably after Christmas.
This week I'm off revlimid, which is nice. That little pill really tires me out and makes me lightheaded. I function on it, but when I get off it, I realize the work involved in day to day activities. My skin is once again peeling off and I haven't been sunning myself. I feel like a snake--molting. What's up with that? My neuropathies are also worsening. The left foot continues to lose feeling. I think that as the years go on and therapies get piled on top of one another, my tolerance lessens. That being said, I always tell my doctor I'm doing fine. I have few options left and do not want to provide any basis for either discontinuing the treatment or reducing the dosage. Numb feet presents all kinds of opportunities. Walking on hot coals; walking barefoot on the ice; wearing shoes 2 sizes too small, kicking the walls, etc. The circus beckons. On the other hand the numbness will likely interfere with my workouts on the balance beam and pogo stick.
The pneumonia is gone, I think. Chest x ray today will tell the tale.
That's it friends. Have a great holiday, Christmas, Hannukah or whatever you celebrate. We wish for you much love, peace, and prosperity for the coming year and are filled with gratitude we have such a wide circle of fine family and friends.
Dan
Blood work this week was good for me. White count 2.7, which is good for me when I'm on chemo; hemoglobin 10.2, hematocrit 32 (quite good for me on therapy) and platelets 71--stable. No word on IGGs. They'll be measured this Monday when I start cycle 2, results probably after Christmas.
This week I'm off revlimid, which is nice. That little pill really tires me out and makes me lightheaded. I function on it, but when I get off it, I realize the work involved in day to day activities. My skin is once again peeling off and I haven't been sunning myself. I feel like a snake--molting. What's up with that? My neuropathies are also worsening. The left foot continues to lose feeling. I think that as the years go on and therapies get piled on top of one another, my tolerance lessens. That being said, I always tell my doctor I'm doing fine. I have few options left and do not want to provide any basis for either discontinuing the treatment or reducing the dosage. Numb feet presents all kinds of opportunities. Walking on hot coals; walking barefoot on the ice; wearing shoes 2 sizes too small, kicking the walls, etc. The circus beckons. On the other hand the numbness will likely interfere with my workouts on the balance beam and pogo stick.
The pneumonia is gone, I think. Chest x ray today will tell the tale.
That's it friends. Have a great holiday, Christmas, Hannukah or whatever you celebrate. We wish for you much love, peace, and prosperity for the coming year and are filled with gratitude we have such a wide circle of fine family and friends.
Dan
Wednesday, December 09, 2009
Pneumonia Comes Early This Year
I have had pneumonia for each of the past 5 years, usually in February. This year it hit me in December and I was ordered to the hospital last Friday. Nothing like checking into the hospital for the weekend. But I broke out, am home and feel much better. A few IV antibiotics seem to do the trick. This stuff shows up in the exact same place in my left lung every year. The CT scan did not show any obstruction or scar tissue so I'm saved from having a scope shoved down my throat. I do know that you can develop a susceptibility to this stuff and it seems I've got that.
I also had a relatively good meeting with my orthopedic surgeon this week. He continues not to want to do anything surgically, which is OK with me. He also showed me on the PET scan and MRI films that the new lesions on the arms and legs aren't really very bad. In fact, you can see the evidence of myeloma in the marrow portion of the bones, but it has not worked its way into any destruction of the bone. So, if the revlimid works, perhaps the bone marrow will heal and no bone will be eroded. I do have one vertebra pushing very close to the spinal cord, but no symptoms of cord involvement. So that's a good thing, too. We ended on a positive note with him exclaiming that for a patient with myeloma I am doing great.
Kidney function is improving. Creatinine is down to 1.4, almost within normal limits. If I drink any more water I'm going to float away!
This pneumonia did have one positive aspect which is it caused my white count to go up. All the way to 6.2. Now that is right in the middle of normal, but for me, as my doctor said, its akin to a normal person being at 25. The good part is that my marrow was able to muster a response to the infection. Something is working in the marrow, which is more than could be said 5 months ago.
I finish up the first cycle of revlimid this week. We'll check the IGGs when I start my second cycle, although no progress doesn't mean it's not working. Sometimes it takes 6 weeks or so to see movement.
That's the status for now. Best wishes to everyone, happy holidays, and I sure wish it would warm up. I am reminded, with this 0 degree weather, why I left North Dakota. Apparently I didn't go far enough south.
Dan
I also had a relatively good meeting with my orthopedic surgeon this week. He continues not to want to do anything surgically, which is OK with me. He also showed me on the PET scan and MRI films that the new lesions on the arms and legs aren't really very bad. In fact, you can see the evidence of myeloma in the marrow portion of the bones, but it has not worked its way into any destruction of the bone. So, if the revlimid works, perhaps the bone marrow will heal and no bone will be eroded. I do have one vertebra pushing very close to the spinal cord, but no symptoms of cord involvement. So that's a good thing, too. We ended on a positive note with him exclaiming that for a patient with myeloma I am doing great.
Kidney function is improving. Creatinine is down to 1.4, almost within normal limits. If I drink any more water I'm going to float away!
This pneumonia did have one positive aspect which is it caused my white count to go up. All the way to 6.2. Now that is right in the middle of normal, but for me, as my doctor said, its akin to a normal person being at 25. The good part is that my marrow was able to muster a response to the infection. Something is working in the marrow, which is more than could be said 5 months ago.
I finish up the first cycle of revlimid this week. We'll check the IGGs when I start my second cycle, although no progress doesn't mean it's not working. Sometimes it takes 6 weeks or so to see movement.
That's the status for now. Best wishes to everyone, happy holidays, and I sure wish it would warm up. I am reminded, with this 0 degree weather, why I left North Dakota. Apparently I didn't go far enough south.
Dan
Wednesday, December 02, 2009
And A Few More Things
Remember all those baby diseases, like measles, mumps, etc.? Well, it seems whatever immunities I had have been wiped out by the high dose chemo and transplant. I have no immunities to mumps, measles, polio, rubella, hepatitus A, B, or C, tetanus, and probably a few others. The debate among my doctors is whether to vaccinate me now or wait until I've finished with my chemo and/or next transplant. I guess I'll stay away from infants and unvaccinated small children.
I've found some relief from the dizziness and headache--sleep. I've been tryng to get through the days without my afternoon naps but have realized that depriving myself of the 2 hour nap in the afternoon was leading to the headaches. So I've resumed my napping and my head has settled down.
The revlimid is also causing more neuropathies. But, I've found a temporary solution for that as well. A heating pad beneath my feet at night seems to help with the pain, keep my feet warm and reduce the muscle cramping in my lower legs. I can't believe I've wrestled with cold feet for the past 3 years when such a simple solution lay at my feet, so to speak.
In addition to the blood counts, we're also watching the measures of my kidney and liver function, creatinine being the main one. My creatinine was slightly elevated when I returned from Little Rock. 1.0 being perfect and I was at 1.2. It has now risen to 1.6, which is too high. So far no remedy other than being told to drink more water. We have to be vigilant as the chemo and the myeloma are known to adversely affect kidney function. I've also got much more iron in me than I need. This is due to the multiple transfusions and is also a trait of the myeloma--it holds onto iron apparently. So that requires another drug in the morning before I eat. That drug has some awful side effects, but we're muddling our way through.
As the years go by with this nastiness it does feel that the complications and side effects become more complex. I still bounce back but it does seem the bounce isn't as high as in the early years. I'm sure my age is a contributing factor. We're not getting any younger, as they say. Which reminds me; I watched the Rock & Roll Hall of Fame concert the other night on HBO. OMG, does Mick Jagger look tired!! That Rolling Stone has rolled a little too long. And with that, I'll close for now. ROCK & ROLL.
Dan
I've found some relief from the dizziness and headache--sleep. I've been tryng to get through the days without my afternoon naps but have realized that depriving myself of the 2 hour nap in the afternoon was leading to the headaches. So I've resumed my napping and my head has settled down.
The revlimid is also causing more neuropathies. But, I've found a temporary solution for that as well. A heating pad beneath my feet at night seems to help with the pain, keep my feet warm and reduce the muscle cramping in my lower legs. I can't believe I've wrestled with cold feet for the past 3 years when such a simple solution lay at my feet, so to speak.
In addition to the blood counts, we're also watching the measures of my kidney and liver function, creatinine being the main one. My creatinine was slightly elevated when I returned from Little Rock. 1.0 being perfect and I was at 1.2. It has now risen to 1.6, which is too high. So far no remedy other than being told to drink more water. We have to be vigilant as the chemo and the myeloma are known to adversely affect kidney function. I've also got much more iron in me than I need. This is due to the multiple transfusions and is also a trait of the myeloma--it holds onto iron apparently. So that requires another drug in the morning before I eat. That drug has some awful side effects, but we're muddling our way through.
As the years go by with this nastiness it does feel that the complications and side effects become more complex. I still bounce back but it does seem the bounce isn't as high as in the early years. I'm sure my age is a contributing factor. We're not getting any younger, as they say. Which reminds me; I watched the Rock & Roll Hall of Fame concert the other night on HBO. OMG, does Mick Jagger look tired!! That Rolling Stone has rolled a little too long. And with that, I'll close for now. ROCK & ROLL.
Dan
Tuesday, December 01, 2009
Revlimid Revisited
One week of revlimid down, 11 (or 17) to go. Having been on revlimid before, I expected to tolerate it fairly well and but for the dizziness it's going OK. I suspect the dizziness is due to the combining every other day prednisone with it. Last time I only took steroids once a week with it. Anyway, not surprisingly it's had an effect on my blood counts. White count dropped a bit from 3.4 to 2.8. Hemoglobin is down to 9.9 from 10.1. Platelets are taking the major beating, having dropped 46 points, from 117 to 71. That explains the bruising on my arms and legs. The slightest bump and I've got a big black and blue mark. Adds to the image of being a warrior, I guess.
It's too early to know if the drug is having any effect on the cancer. That will take 6 weeks or longer. Rifkin continues to look for other options and told me he is meeting with some Japanese pharmaceutical reps to see if he can get HSP 90 (a drug that has gone through clinical trials and had some success, but for reasons I don't understand, is not being produced anymore). This is supposed to be a nontoxic chemo, ie., no side effects. Wouldn't that be nice?
We had a great Thanksgiving. As usual Susan prepared a feast fit for an army and we all indulged ourselves for days on her great cooking. My mom and her husband came down from North Dakota and we were also joined by my nephew, Rob Scheeler (who is in grad school at CU) and his girlfriend, as well as a few other friends. This was the first visit with my mother since we headed off to Little Rock, so it was long overdue and we had much ground to cover. We did our best, spending long hours around the table. Julia especially likes to hear of the exploits of my brothers, sister and me when we were young. It was mostly stories about Tom and Mike misbehaving, however, as I was usually at church, doing my duties as an altar boy.
And that's the status this Thanksgiving. Continuing on our journey, one day at a time.
Best wishes to all for a peaceful holiday season.
Dan
It's too early to know if the drug is having any effect on the cancer. That will take 6 weeks or longer. Rifkin continues to look for other options and told me he is meeting with some Japanese pharmaceutical reps to see if he can get HSP 90 (a drug that has gone through clinical trials and had some success, but for reasons I don't understand, is not being produced anymore). This is supposed to be a nontoxic chemo, ie., no side effects. Wouldn't that be nice?
We had a great Thanksgiving. As usual Susan prepared a feast fit for an army and we all indulged ourselves for days on her great cooking. My mom and her husband came down from North Dakota and we were also joined by my nephew, Rob Scheeler (who is in grad school at CU) and his girlfriend, as well as a few other friends. This was the first visit with my mother since we headed off to Little Rock, so it was long overdue and we had much ground to cover. We did our best, spending long hours around the table. Julia especially likes to hear of the exploits of my brothers, sister and me when we were young. It was mostly stories about Tom and Mike misbehaving, however, as I was usually at church, doing my duties as an altar boy.
And that's the status this Thanksgiving. Continuing on our journey, one day at a time.
Best wishes to all for a peaceful holiday season.
Dan
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