Optimism vs. Skepticism

We met my new doctor yesterday. Yes, new doctor. Dr. G. has gone east to NYC to head up the transplant program at Sloan Kettering. His departure is lightheartedly called a betrayal by the staff at MDA because Sloan and MDA are always competing for the honor of being the nation's top cancer center. Dr. G. called me in December, before we had committed to MDA to tell me of his decision and to offer alternatives. As you know, we decided to stick with MDA, first because Dr. G would still be here for my transplant and a month afterwards and second because of MDA's reputation for running such a smooth and clean operation. A reputation which has proven to be true based upon our experience. Our new Dr., Dr. Q, from India I believe, is quite warm and knowledgeable. Dr. G has also indicated he will continue consulting on my case, even though he is now in NYC.


The bone marrow results are encouraging. My doctors are very encouraged and Susan and I are a bit more skeptical. My plasma cells were at 29% just before the transplant (down from 87% post Arkansas, due to the 3 months on revlimid). The lastest bone marrow shows them at less than 5% (actually 1 %). So why aren't we jumping up and down in celebration? First, remember that debacle in Arkansas when the plasma cells went from 90% to 5% in one week; only to return to 90% the next week. Although the bone marrow biopsy is often described as one of the most definitive tests, it has its shortcomings. One of those is that myeloma is patchy. It can be concentrated in one section of the marrow, and hardly present in another. So, my view is that they hit a section that has fewer plasma cells, which is not representative of my entire bone marrow. Why do I think this? Because my IGGs haven't moved downward, and because my M protein has also not moved--it remains at 1.7. We are assured that the effects of the chemo will continue for another 30 to 60 days and that can have a positive effect in decreasing the myeloma. The doctors, (Dr. G and Dr. Q) both see the entirety of my blood work as very encouraging. When I was questioning Dr. Q, he immediately asked how my blood counts were in Arkansas, when my bone marrow results were so inconsistent. When I told him that my blood counts were in the toilet, i.e., I continually needed neupogyn, red blood transfusions, and platelets, he noted that I have not needed any of that here, (other than a couple of neupogyn shots) meaning that my marrow is working much better. Regardless, things have definitely stabilized. And they still plan to start me on a regime of revlimid and another infusion of Mike's cells, both of which will help further decrease if not eliminate the myeloma.

An insight into the road we have walked: in mid June when my counts were not recovering, I was still losing weight, I was struggling with a body rash and thrush, my IGGs were rising, and Rifkin was telling me that he could not treat me yet because my counts were too low, I told him that I thought I had really screwed up in going to Arkansas and that I had gotten myself in such a bind that I would never recover. Rather than reassure me, he only said he understood why I felt that way. He essentially acknowledged I was in trouble, and I think that is one of the reasons he ultimately referred me to MDA. In light of that history, stable disease is great and decreasing myeloma is fantastic. We'll take this.

I still wrestle with fatigue, although less so, as well as nausea and diarrhea. Of what fun! But all in all I'm doing well, or in the eyes of my MDA team, I'm doing very well. They are better judges since they see all those who have much more trouble following transplant.

Thank you again for all the support, cards, letters, emails, thoughts, prayers, etc. We continue to be extremely grateful for all the support from family and friends. We love you.
Dan

Satisfied With Stability?

The news yesterday should be measured against expectations. Depending on what we/you hoped for or expected, it could be good or not so good, but definitely not bad. Thirty days after transplant, the IGGs haven't moved. They're in the low 1900s, and were at 1875 in early March when this latest treatment started. (normal being between 600 and 1600) I had a bone marrow biopsy today and we'll have a bit more information next week. So what does this mean? Any reduction in IGGs would be caused, at this juncture, primarily by the high dose chemo I received prior to transplant. That didn't happen. The main chemo drug was melphalan. That was the main drug in my first transplant and also a key drug in my second transplant. We know how well that worked in those transplants. NOT. I repeatedly told Dr. B in Arkansas that melphalan did not work with me and my concerns were dismissed because, I was told, melphalan would given along with 8 other drugs. Those 8 other drugs didn't do anything to my disease either, other than make it even angrier than it already was. And, of course, the combo package made me extremely sick.

I told Dr. G. that melphalan does not work with my disease. At least he acknowledged my concern but told me melphalan is in every myeloma protocol they use and that the allo transplant would also have my brother's cells to work with. How is it that I know what won't work with me but the docs don't, or refuse to believe I could know such stuff? Yes, I'm frustrated. That being said, it's probably fair to say there isn't a chemo drug that could be given in high dose that would work with me, since I received every possible drug in Arkansas and nothing worked. As Dr. Rifkin noted upon my return from Arkansas, we need to use a little more finesse with my treatment.


Dr. G's spin on my IGGs is that my disease has been stable for more than 2 months and that is nothing to dismiss. In that he is correct, as my experience in Arkansas was that after about 2 to 4 weeks of each of the 3 high dose chemo treatments I received the myeloma counts started rising again. Dr. B's flame throwing super beam plus couldn't even stabilize my disease! Also, we won't know the full effect of the pre transplant chemo until 90 days post transplant, so downward movement could still occur in the next couple of months. Stable disease is definitely better than raging disease.


All is not lost, however. Because I have Mike's cells, they stand at the ready to attack this myeloma. They haven't been highly active in that fight because the anti rejection drugs mask my cells. So the plan is to start weaning me off the anti rejection drugs in about 3 weeks, being careful not to let graph host disease set in. Once off the anti rejection drugs, I'll get another infusion of Mike's cells and start on a low dose of revlimid. I asked Dr. G if remission is still possible. After a long pause he said, "I'm going to say yes. Definitely." I'm not sure what to make of that. Not to put the pressure on, buy I'm still counting on you, Mike.


Susan's expectations were higher than mine. She looked at me and said, "I was hoping for a miracle." My response: "Don't ignore the miracle standing right here in front of you. It's been five years and I'm still here." The anxiety of all this has taken its toll as she came down today with a nasty bladder infection. When it rains it pours.


On a more positive note, my counts continue to be very good and stable. I'm also getting some energy back and haven't slept 18 hrs a day for at least the last 4 days. I'm probably down to 12 hrs. a day. We go into the clinic a little less frequently, which is nice, especially since we now get the weekends off.

Continuing the Boring Life

Visits to the clinic have now been cut to Mondays, Wednesdays and Fridays. My counts remain stable and I haven't needed any shots or transfusions. I've even had a couple of "good" days this week, meaning I didn't sleep the entire day. Yesterday I'm sure I slept 18 hours or more. But today I've felt more energized, took two walks and only napped for 2 hours. This is progress.

We saw the doc on Thursday and he continues to be pleased with progress so far. He outlined the plan for the next 30 to 40 days and it involves primarily watching for graph host disease or any other complications. At some point they'll start reducing the anti rejection meds and see how well Mike and my cells get along. In the meantime, my activities remain limited, I'm primarily housebound, and am thankful for the days we don't have to truck down to the clinic. Of course, Susan has to play nurse on those days, hooking up my IVs at home, which always makes her nervous since a nurse in Little Rock told her if she didn't do a particular thing it could kill me. Talk about increasing the pressure. That's worse than taking the nursing boards.

We received a nice card from a friend in Denver this week addressed to Susan and Dan Patterson c/o Uncle Gary. How funny! Soon Uncle Gary will get his own postal code.

Best to everyone.
Dan

A Week at Home

The past week has been "relatively" uneventful. I still have my 5 hour daily visit to the clinic to get blood drawn and fluids. So far, I've only needed one neupogyn shot, which took my white count from 2.5 to 26.0 in one day. Whoa. slow down Mike. But I feel great about not needing transfusions of either red cells or platelets. The stability of my blood counts makes Dr. Giralt even more confident that Mike's cells have engrafted, as he doesn't think my cells would perform this well--I agree. In fact, he is quite pleased with my progress so far. That being said, it hasn't been a cake walk. It seems I'm plagued with either vomiting or something similar. Par for the course. And I don't think I've ever slept so much in my life.

And Susan is cleaning up the place with a vengence. Last night she was out in her brother's garage, of all places, moving things, dragging things out. Her brother seems to be the beneficiary of her channeling of all her nervous energy. Of course, I think it's the least "we" can do for intruding on his living space for 4 months. But he and Suze are having a good time, as I sleep my life away. They also are eating some fine food, as Houston has many great restaurants. Unfortunately, my appetite is also asleep.

Houston is quite nice this time of year, at least from the inside of the house or clinic looking out. My doc says stay in the house for another couple of weeks to avoid the pollen. It does feel like house arrest.

So far, so good. Still anxious to get back home, but doing well under the circumstances.
Thanks to all the MM survivors who have jumped on the blog to send their good wishes. Julia called me the other night, "dad, who is Steve Ritter? How do you know him?" Well, I know him only by his blog. "Well, he certainly is a nice man," she responded. Yes, all of you who continue to support us are very nice, indeed. Thank you.
Love,
Dan

Paroled

I was discharged on Monday afternoon following an uneventful Easter weekend. For the next 10 days we have daily clinic visits, which will take from 4 to 6 hours a day as they test my blood, infuse fluids and any other nutrients my blood may be missing such as potassium, platelets, red cells, etc. I am still so exhausted that I see this as an opportunity to sleep, as I did yesterday. I slept through most of the 4 hours, then came home and slept another 2 hours. I guess the work going on in my bone marrow is sapping my energy. At least there's something happening there. Thus far everything in the blood seems to be in good shape (way to go Mike!).

We are now on the alert for graph host disease, which can show itself in variety of ways, such as skin rashes, fevers, increased GI problems, etc. None of it sounds good so we are maintaining high vigil to catch anything early.

Susan and Gary spent the 3 1/2 weeks that I was in the hospital cleaning his house and yard so I would have a comfortable clean environment. It all looks so nice and spit polished. Unfortunately it appears I won't be able to enjoy sitting in the yard as my first attempt at that ended after 30 minutes when my hands got all red and itchy and I had to retreat inside. That was probably my sensitive skin's response to the pollen and heat. I guess I've moved from room arrest to house arrest; a gradual expansion of my area of influence.

My appetite is marginal, which is why I was not shy about bulking up in the months leading up to this. I've also lost all my hair once again. Except this time I went to the barber and got my dome polished. The top of my head literally shines now. Ah, I'm sure it will be a challenge to be such a hottie. NOT.

So the plan is to keep everything as boring as possible and to get early release back to Denver. It's going to get hot and humid here very soon and after 35 years in Colorado I don't tolerate heat and humidity very well.

Happy Spring to all.

Dan

Discharge Aborted

Well, it seems Ireally messed this one up. Yesterday was not a good day. Blistering headache with vomiting. Ultimately they took me off the anti rejection meds, gave me some IV dilauded and things calmed down. But not before I had my whole team in a tizzy. I felt much better this morning, after getting close to a full night's sleep. They only woke me once during the night. But the doctor was not very keen about discharging me because if I got sick again I would have to return to the hospital, get admitted through the ER (sit for hours and wait for a bed with all the sick people around me, coughing and hacking) and there would be no guarantee they would have a bed, or that I would get a bed on the transplant floor. The doc said, if she were me, she would stay the weekend and get discharged on Monday. So it looks like an Easter celebration in my hospital room. I declined the invitation to decorate my IV pole and participate in the Easter parade. But maybe I'll take a video to share.

I'm not too upset with this delay. I've written about our experience in Arkansas when we had to get admitted through the ER on a weekend and it truly was a nightmare. They are short on staff and cancer patients don't get any special treatment through the ER (we are such a spoiled bunch!), even though we are immunosuppressed.

With the exception of yesterday I've continued to do well. My white count is up to 8.1. Hemoglobin is 9.2 and platelets are 80. It has been along time since my platelets were at that level. This is all good because the elevated white count will help fend off infections and will help draw up the hemoglobin and platelets. Way to go Mike. (since these are Mike's cells). I had my first transfusion with Mike's blood type (O+) a few days ago and no complications. Changing to his blood type should not be a problem since O+ is the universal donor anyway.

So, we're looking at a Monday discharge, provided I behave myself. Will keep you posted. And thank you everyone for all you support.
Love,
Dan

Engrafting and More

I was awakened this morning by my male Russian nurse (so imagine this being said with a heavy Russian accent): "I am pleased to tell you, my friend, you are engrafting. Your white count is now 1.5." YES! My night nurse predicted a jump in the white count given the intense bone pain I've been having. My back, sternum, and hips are all throbbing from the production of cells, which is a good thing, but it sure doesn't feel so good. Anyway, Mike is in Houston for a mediation so he spent a few hours here at the hospital checking on me. We had a nice chat.

So, we have passed through the risks associated with the transplant, and the risk of nonengraftment. Two major risks without major complications. I think this bodes well for me getting out of here sooner rather than later. Perhaps in a week.

That's all for now folks. Keep the good thoughts coming our way.

Right after I posted this the doctor came in for the morning rounds. She told me that I should plan on going home (to Gary's) on Friday. Wahoo! I am in shock. That is a week early and Iam so ready to get out of here. What a great day.
Love to all,
Dan

Look Out, The Big Fella Is Coming Through

The nurse woke me up this morning with, "looks like something is brewing in your bone marrow. Your white count is .3, up from .1" Not a huge step in terms of numbers (normal count is above 3.0, but for me normal/acceptable is above 2.0. But more importantly cells are growing/engrafting in my bone marrow. They are most likely Mike's cells since they obliterated mine with the chemo. It's been 11 days since my transplant so this is on the earlier side of the time line cells are expected to start producing.

Yesterday was my roughest day so far and that might be attributable to the work being done in my bone marrow. I was completely exhausted all day along with the other typical chemo side effects. As my white count goes up I should start feeling better.

It's a strange thought when I ponder what they are doing to me. Killing my cells, harvesting cells from Mike and infusing them into me. Perhaps the word is humbling. Then again amazing would also be an apt description.

Much love to all,
Dan

Whas Up? Not Much.

I've been waiting to "report" something, but fortunately nothing is happening, which is a very good thing. Every day I am asked by at least 4 nurses and 2 doctors whether there is any change in my condition/symptoms, etc. Nothing to report. Susan calls me every morning with a question, "how are you?" My daily response: "I'm fine." (under the circumstances) We're waiting for Mike's cells to wake up, although they aren't really expected to show any activity for at least another 4 to 7 days. I'm not bursting with energy but I do manage to get at least a mile's walk in every day, and usually more. In about a week or so we hope to see some activity in the white cell count and then a few weeks later they'll do a DNA test to see if it's Mike's or my cells that are growing. We want Mike's cells to show up and start to take over. Tom and I were talking about how we could provoke Mike into action. We concluded that he is so competitive that the best way to bait him is to tell his cells they aren't strong enough to do this job. I can already see his face getting red as he reads this. The challenge should work.

Two incidents come to mind. First, when we were in high school Mike set the school record for situps (something in the neighborhood of 1000 to 1500). His butt was so sore he could hardly sit for a week. Second, he got in a fight with the school bully and got punched in the nose and had his nose broken. Mike looked in the mirror, saw his nose off to one side, walked over to the well built bully and said, "you broke it, you fix it. Push it back in place." And by god, he did and then he sat down and cried and cried, with Mike standing there looking at him. For those who don't know him, his self annointed nickname in high school was "muscles Mike." Later he changed it to "big fella". Interesting, tough, and stubborn fella. There are an equal number of stories about brother Tom, but I'll save them for another day. And as for my sister, Kathy, well she chose to pursue a quieter life, or perhaps I just don't know about her secret life.

Susan pushed me into attending an exercise class here, with the promise that she would go with me. So there we are, all sitting in a hallway with our IV poles at our sides. The instructor starts out with a game to get to know each other and I think I've taken a ride in the way back machine and am back in first grade. Halfway through the "tell us 2 truths and a dream" Susan leans over and confesses that she can't take this and has to leave. "Say what" I say. "You made me come to this and now you're leaving?" She sits down. Five minutes later she's up (we're still playing the game) and she tells me she is definitely leaving. My response: "but you'll miss the shuffleboard game." She left. I stayed, but I don't think I'm a better man for it.

Now, back to this 10x10 room. I'm ready to get out. I'm tired of the menu, but thankfully don't have much of an appetite. I'm longing for a good night's sleep without interruptions to draw blood and check my vitals. I'm tired of being tethered to an IV pole (a ball and chain come to mind). Showering with these tubes coming out of my chest into my IV is quite an experience. and as my mother used to say: I'm sick and tired of being sick and tired. But these complaints are minor and I know I can put up with this. Just venting. Susan is an angel. She takes such good care of me and daily I am grateful I have such a good partner who willingly gives up her life to travel to such beautiful vacation retreats as Little Rock and Houston (for the summer).

Thank you everyone for keeping us going. We love you.
Dan

Happy Birthday ???

Tomorrow presents a number of birthday options. First, the unquestionable: Mike will be 60 years old. WOW. talk about old! Happy Birthday Mike. We're sure glad you've made it this far. Now for the dilemna: Do I share in this birthday? Am I also 60, or at least partially so? I don't feel 60. Or did I have my birthday on March 19th when I received Mike's stem cells? If so, would that be my first birthday? or my 60th? It makes my head spin. I think I'll claim all dates as birthdays and (stealing a phrase from the NCAA) call it March Madness. Whatever the date and whichever the number, I'm glad to have this dilemna. March 23rd is also the 5 year year "anniversay" of my MM diagnosis, and to continue the celebration, March 26th marks the date, 33 years ago, when Susan and I first met on a 2000 mile blind date.

My course continues on the expected path. White count is now 0. In 3 days I'll start neupogyn shots which will I will receive for 7 to 10 days, to help wake up Mike's cells. This next week is predicted to be the low point of this transplant. Each day I'm feeling more tired, etc. But I'm still getting more than a mile of walking. "They got me going in circles....round and round we go."

Thank you everyone for the cards, emails, letters, and good wishes. We are very appreciative of your love and support.
Birthday wishes to all,
Dan

Keeping It Boring

The transplant took place, as expected, on Friday, March 19th. I told Mike that's going to be my new birthday. They pumped me full of all kinds of drugs--anti rejection, anti viral, anti fungal, anti social. No, not anti social. That might come from Mike's cells. Then again, he's a pretty socialable guy, so maybe not. I had some immediate response to the transplant in the form of severe nausea and GI issues, but they subsided within hours. Thus far things are pretty stable. My current complaint revolves around the piercing headaches I seem to be getting from one of the anti rejection meds. They give me darvon but it doesn't seem to be helping much. The offered me dilauded but I'm not interested in that high. I took that to help with the back pain in 2005 and lost about 3 months of memory!



So the days just slip by. The nurses are in my room every hour or so, hanging a new bag of drugs, checking my vitals, etc. Not much time to rest. They are letting me sleep more at night instead of checking my vitals every couple of hours. I'm continuing to walk every day and am now up to 2 miles a day. The route we take around the floor makes Susan dizzy. A metaphor for our life perhaps?



This all feels too familiar. Reflecting back on the past 5 years it feels like we've spent most of our time in medical facilities. Life has turned into a treatment regime to stay alive, as opposed to exploring our world and filling our lives with new experiences. Certainly not what we had in mind for our retirement years. I wonder what it will feel like when I get into remission and life opens up again. Could we really bracket these past five years and move back into our old lives? I'm sure not. Too many lessons learned. I'm sure life will be much richer for this experience. In the meantime, we await the awakening of Mike's cells.


Love to all,

Dan

Day's Rest

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

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

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

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

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

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

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

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

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.