No chemo today. I've finished the 5 days of chemo. Yesterday being the most full, with fludorabine, melphalan, dexamethasone, zophran (an anti nausea) and tacrolinus (anti rejection). One day's rest before I get introduced to Mike at the cellular level. Even though I've known him 57 years, one day seems hardly enough time to prepare for such an introduction. I prefer to go slow with these first meetings; you know, spend some time getting to know one another, etc. Instead, Mike's cells will be thrown into my bone marrow and off we'll go, hand in hand so to speak (or is it blood in marrow?).
I've managed with the chemo so far, but am well aware that the side effects may increase in the following weeks, so we're not through this just yet. Then, once Mike's cells start producing I'll probably be discharged and monitored closely on an outpatient basis to watch for graph host disease, i.e., my body's attempt to reject Mike's cells. Fortunately, we've gotten along over these past years and neither one of us is interested in rejection, so I'm confident we'll be fine.
I've pushed my walks through the hallways to 1.6 miles. Today I'm going for 2 miles, just to keep my good shape. Speaking of which, all the fluid they've given me has pushed me up a total of 9 lbs. Yikes! I was up 12 lbs., but they gave me lasix (a pee pill) and I lost 3 lbs. I feel my appetite slowing so maybe that will help. The hospital food is now officially old, but Susan and Gary are bringing me food from surrounding restaurants. My diet prohibits any fresh fruits or uncooked vegetables--to prevent me injesting bacteria. Boring.
But that's what my doctor says: let's keep it boring.
That's all from Houston. It looks to be another nice day in Texas.
Love,
Dan
Showing posts with label MD Anderson. Show all posts
Showing posts with label MD Anderson. Show all posts
Thursday, March 18, 2010
Tuesday, March 16, 2010
Celebrate the Irish
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
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
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
Friday, November 06, 2009
A List of Ditties
Household woes: Remember our flood this spring, just after we returned from Little Rock, where Julia's room flooded from a leak in the foundation, for the third year in a row? Well, it happened again. Fortunately to a lesser degree and given the inability of any contractor to fix this problem, we've decided to do nothing at this time. I've advised Julia to wear her swimsuit while in her room as a precaution.
Then, when we returned from M.D. Anderson, we had our furnace inspected and were told we need a new furnace. We're waiting for a 2nd opinion before we lay out that cash.
Health Insurance scare: A few weeks ago I received a letter from Dr. Rifkin's clinic advising that negotiations between Rocky Mt. Cancer Centers and Blue Cross had broken down and RMCC physicians would no longer be a part of the Blue Cross network. The financial impact of that would be disasterous for us. Summoning my rusty lawyer skills I immediately called 3 people at Blue Cross as well as a couple of people at RMCC and gave them a piece of my mind. I then called Rifkin at night on his cell phone and offered my mediator skills to help resolve the impasse. (I love the fact that Rifkin will always take a call from me). Not that I am due any credit, but I received a letter today indicating the parties had resolved their differences and RMCC will remain in network. Had they not reached agreement, RMCC would be out of network for me and subject to a $6000 deductible, plus paying only 70%, while other centers, such as M.D. Anderson would be in network and therefore subject to a much lower deductible, after which they would pay 100%.
Who said we need health care reform? After 15 years of doing insurance litigation and after more than 4 years as a patient drawing upon health insurance, I continue to be an advocate for a single payor system. When you become seriously ill (especially when its through no fault of your own) and can't work at your previous profession, you should not have to deal with whether you will be able to get the care you need or whether you will face financial ruin trying to stay alive. Dealing with an illness is stressful enough without compounding the problem by injecting such financial uncertainties into one's life. While the polling shows that most people are satisfied with their current health insurance, I am quite confident that a vast majority of those people have not had many claims made on their insurance. Once you are forced into constant use of your health insurance you see how broken the system is. OK, I'll get off my soapbox now.
The new MRI/Sauna: I had another 1 1/2 hour MRI at M.D. Anderson. This time in a new machine. First, I've been fighting a cough for about 3 weeks and told the technician I hoped I could get through without much coughing, but I had cough drops to help. I was told to spit out the cough drops and no coughing would be allowed. Hmmm. OK, so I think, I'll keep my throat moist by swallowing. In I go. The hammering noise starts. I want to cough. I swallow. The technician yells through the microphone, "No Swallowing. Don't move." Right. Don't cough, don't swallow, don't move. I did the best I could, but was reprimanded repeatedly for swallowing. And then there was the sauna. I was warned that this machine heated up much more so than the old model. About 20 minutes into this scan a sweat breaks out on my forehead, dripping into my eyes, ears, nose, etc. I dare not move. When I come out an hour later my scrubs are soaked with sweat. I look like I've been in a sauna or just finished a rigorous workout. I walk out into the dressing area where other patients are waiting to be scanned. They look at me quizically as if to say, "what is going on in there?" Of course, most of them are not scheduled for the full body, 1 1/2 hour scan so they won't have quite the workout I did. A nurse walks by and says, "you're overcooked."
Bone Marrow Surprise: This past Wednesday I'm scheduled to see Rifkin to discuss the M.D. Anderson recommendations. When I check in they tell me I'm early for my bone marrow biopsy.
"What biopsy?"
"Oh, no one contacted you? Well, have you eaten this morning?"
"Yes, I just had breakfast."
"Well, you can reschedule or you can have the biopsy done without anesthesia."
"Let's get it over with," I say and I have yet another biopsy without pain medication. I did get some ativan to help me forget the procedure. Either the ativan is working, or Rifkin is really good, as I don't remember it being too painful.
Sleeping Pills: I've finally begun weaning myself off the sleeping pills. My sleep cycle was messed up after Little Rock and then I started with the every other day steroids which led to my taking sleeping pills nightly since I returned to Denver. It was either that, or not sleeping and feeling doubly exhausted. The last few nights I've been able to sleep without the aid of Lunesta and I'm elated. Clear headedness returns!
Return of the World Traveler: Julia returned to Denver this Friday after spending the last 2 weeks in Dubaii and Pakistan, with one of her best friends. She has regaled us with stories, including a confrontation at the Lahore airport where she stood her ground while a Pakistani tried to shake her down for more money for a phone call. She also underwent quite an interrogation by customs, questioning just what she was doing in Pakistan. But what an experience she had. I told her that with these travels she is likely to be on some government list of people to watch.
NYC Fits Like a Glove: Catherine loves the Big Apple. Susan's genes are alive and well in our eldest daughter. Cate thinks there's no place better than NYC. She sounds so happy, loves the city and her job at Yahoo. Once she gets some furniture in her apartment I'm sure Susan will be paying her a visit. The question is, will Susan ever return?
The Short Term Treatment Plan: While we are waiting for all the test results the path forward seems to be pointing toward adding revlimid to the prednisone. That will be tolerable. We hope it does some damage to the myeloma cells so the mini allo transplant can go forward. If so, we're likely to have that done at M.D. Anderson in Houston. As always, we don't plan very far ahead. One step at a time, one day at a time.
Reflections: I think the best description of our state of mind would be, we're tired. The last year has been difficult to say the least. The trip to M.D. Anderson was too reminiscent of Little Rock. We feel like we have to gear up for another long siege and there are days we aren't sure we have the energy for that. Tracking the test results, the numbers, the cancer levels feels at times like a diversion from the heavier issue of dealing with an incurable cancer. In our own private thoughts I know we are probing and searching for some meaning in all this. Sometimes we talk about it but most of the time we prefer not to think about it. The "we" I speak of isn't just Susan, me, Cate and Julia, or even my brothers, sister and mom. It is all of us--yes, you included. I can sense the compassion, concern and yes, even the fear. Fear of loss. It touches me deeply. But none of us should be afraid. This experience has caused many of us to look at our lives differently, and in many cases to live with greater depth, compassion and understanding. I continue to trust and to know that things are as they are supposed to be. As many of you know I have been blessed to have a spiritual teacher whose teachings and practices have provided a vehicle for me to work toward transcending this disease. Oh, I have my days. But most of the time, with the help of my meditation practices and the support of so many people, I am filled with gratitude for being given a life filled with so much love and compassion. Thank you.
Dan
Then, when we returned from M.D. Anderson, we had our furnace inspected and were told we need a new furnace. We're waiting for a 2nd opinion before we lay out that cash.
Health Insurance scare: A few weeks ago I received a letter from Dr. Rifkin's clinic advising that negotiations between Rocky Mt. Cancer Centers and Blue Cross had broken down and RMCC physicians would no longer be a part of the Blue Cross network. The financial impact of that would be disasterous for us. Summoning my rusty lawyer skills I immediately called 3 people at Blue Cross as well as a couple of people at RMCC and gave them a piece of my mind. I then called Rifkin at night on his cell phone and offered my mediator skills to help resolve the impasse. (I love the fact that Rifkin will always take a call from me). Not that I am due any credit, but I received a letter today indicating the parties had resolved their differences and RMCC will remain in network. Had they not reached agreement, RMCC would be out of network for me and subject to a $6000 deductible, plus paying only 70%, while other centers, such as M.D. Anderson would be in network and therefore subject to a much lower deductible, after which they would pay 100%.
Who said we need health care reform? After 15 years of doing insurance litigation and after more than 4 years as a patient drawing upon health insurance, I continue to be an advocate for a single payor system. When you become seriously ill (especially when its through no fault of your own) and can't work at your previous profession, you should not have to deal with whether you will be able to get the care you need or whether you will face financial ruin trying to stay alive. Dealing with an illness is stressful enough without compounding the problem by injecting such financial uncertainties into one's life. While the polling shows that most people are satisfied with their current health insurance, I am quite confident that a vast majority of those people have not had many claims made on their insurance. Once you are forced into constant use of your health insurance you see how broken the system is. OK, I'll get off my soapbox now.
The new MRI/Sauna: I had another 1 1/2 hour MRI at M.D. Anderson. This time in a new machine. First, I've been fighting a cough for about 3 weeks and told the technician I hoped I could get through without much coughing, but I had cough drops to help. I was told to spit out the cough drops and no coughing would be allowed. Hmmm. OK, so I think, I'll keep my throat moist by swallowing. In I go. The hammering noise starts. I want to cough. I swallow. The technician yells through the microphone, "No Swallowing. Don't move." Right. Don't cough, don't swallow, don't move. I did the best I could, but was reprimanded repeatedly for swallowing. And then there was the sauna. I was warned that this machine heated up much more so than the old model. About 20 minutes into this scan a sweat breaks out on my forehead, dripping into my eyes, ears, nose, etc. I dare not move. When I come out an hour later my scrubs are soaked with sweat. I look like I've been in a sauna or just finished a rigorous workout. I walk out into the dressing area where other patients are waiting to be scanned. They look at me quizically as if to say, "what is going on in there?" Of course, most of them are not scheduled for the full body, 1 1/2 hour scan so they won't have quite the workout I did. A nurse walks by and says, "you're overcooked."
Bone Marrow Surprise: This past Wednesday I'm scheduled to see Rifkin to discuss the M.D. Anderson recommendations. When I check in they tell me I'm early for my bone marrow biopsy.
"What biopsy?"
"Oh, no one contacted you? Well, have you eaten this morning?"
"Yes, I just had breakfast."
"Well, you can reschedule or you can have the biopsy done without anesthesia."
"Let's get it over with," I say and I have yet another biopsy without pain medication. I did get some ativan to help me forget the procedure. Either the ativan is working, or Rifkin is really good, as I don't remember it being too painful.
Sleeping Pills: I've finally begun weaning myself off the sleeping pills. My sleep cycle was messed up after Little Rock and then I started with the every other day steroids which led to my taking sleeping pills nightly since I returned to Denver. It was either that, or not sleeping and feeling doubly exhausted. The last few nights I've been able to sleep without the aid of Lunesta and I'm elated. Clear headedness returns!
Return of the World Traveler: Julia returned to Denver this Friday after spending the last 2 weeks in Dubaii and Pakistan, with one of her best friends. She has regaled us with stories, including a confrontation at the Lahore airport where she stood her ground while a Pakistani tried to shake her down for more money for a phone call. She also underwent quite an interrogation by customs, questioning just what she was doing in Pakistan. But what an experience she had. I told her that with these travels she is likely to be on some government list of people to watch.
NYC Fits Like a Glove: Catherine loves the Big Apple. Susan's genes are alive and well in our eldest daughter. Cate thinks there's no place better than NYC. She sounds so happy, loves the city and her job at Yahoo. Once she gets some furniture in her apartment I'm sure Susan will be paying her a visit. The question is, will Susan ever return?
The Short Term Treatment Plan: While we are waiting for all the test results the path forward seems to be pointing toward adding revlimid to the prednisone. That will be tolerable. We hope it does some damage to the myeloma cells so the mini allo transplant can go forward. If so, we're likely to have that done at M.D. Anderson in Houston. As always, we don't plan very far ahead. One step at a time, one day at a time.
Reflections: I think the best description of our state of mind would be, we're tired. The last year has been difficult to say the least. The trip to M.D. Anderson was too reminiscent of Little Rock. We feel like we have to gear up for another long siege and there are days we aren't sure we have the energy for that. Tracking the test results, the numbers, the cancer levels feels at times like a diversion from the heavier issue of dealing with an incurable cancer. In our own private thoughts I know we are probing and searching for some meaning in all this. Sometimes we talk about it but most of the time we prefer not to think about it. The "we" I speak of isn't just Susan, me, Cate and Julia, or even my brothers, sister and mom. It is all of us--yes, you included. I can sense the compassion, concern and yes, even the fear. Fear of loss. It touches me deeply. But none of us should be afraid. This experience has caused many of us to look at our lives differently, and in many cases to live with greater depth, compassion and understanding. I continue to trust and to know that things are as they are supposed to be. As many of you know I have been blessed to have a spiritual teacher whose teachings and practices have provided a vehicle for me to work toward transcending this disease. Oh, I have my days. But most of the time, with the help of my meditation practices and the support of so many people, I am filled with gratitude for being given a life filled with so much love and compassion. Thank you.
Dan
Thursday, October 29, 2009
M.D. Anderson Consults
We've finished our consults with the doctors here at M.D. Anderson and now I just having testing to complete over the next 2 days. We also have a few tests that will be done in Denver (bone marrow biopsy and skeletal survey.) We met with the head of the transplant team (Dr. Giralt) and the head of their myeloma treatment team(Dr. Orlowski). Dr. Orlowski and his father developed velcade. These docs are going to communicate with Dr. Fonseca at Mayo in Scottsdale regarding my case and get his input as well. So, at a minimum I feel I am getting the best advice possible from the best myeloma treatment centers in the country. (Dr. Barlogie, Dr. Rifkin, Dr. Giralt, Dr. Orlowski, and Dr. Fonseca). Unfortunately no one has a silver bullet for this disease. The short term strategy is to add a chemo drug to the prednisone to try to get the cancer levels down. Orlowski recommended revlimid. Giralt talked about pomalidomide and bundamistine (sp?). We'll be discussing this with Giralt by phone on Monday and we see Rifkin on Wednesday. Mid term strategy is to be ready for a mini allo transplant (from one of my brothers) if we get my cancer levels down. It seems that it is very unlikely, given the resistant nature of my myeloma, that any chemo drug would give me remission or even long term nonprogression of my disease. So, we have to consider the mini allo transplant with all its attendant risks.
One of the interesting things Giralt is working on is use of a vaccine as part of the mini allo transplant. They would take some of my myeloma cells, kill them, then inject them into my donor to provoke an immune response before transplanting the donor cells into me. Because the myeloma cells are dead cells, this process presents no additional risk to the donor.
We'll make some decisions next week, I suspect, at least with respect to the short term strategy. That's it from Houston for now.
Dan
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