Final Exams

At some point they will discharge me. Of that I'm sure. In preparation they are putting me through the steps I went through just prior to my admission to the hospital for the transplant. Blood work, blood work and more blood work. An opthamologists exam where no fewer than 4 people peered into my eyes. I can only wonder what deep dark secrets they saw. The exam was intended to look for a couple of problems: changes in vision and graft vs. host disease (gvhd). Neither was present. Similarly my pulmonary function was normal and there is no evidence of gvhd in the lungs. This surprised me given that the chemo regime I received in Little Rock (Super Beam plus) is very hard on the lungs as is all chemo. I figured this 3rd transplant would do my lungs in. Not so. Everyone is quite pleased that I haven't had gvhd as it can be quite nasty. Essentially its Mike's cells attacking any or all of my cells or organs. His cells would see my cells or organs as foreign and go after them. I'm not out of the woods yet as it can hit anytime in about 3 years from transplant. But most often it occurs in the first 100 days, which is why they want to keep me here for that 100 day period.

And then there are the 17 pounds I've lost. Nothing compared to the 50 I lost in Arkansas, but more than I expected. Thankfully Dr. Rifkin beefed me up with steroids before this transplant so I had the weight to lose.

Susan and I had to attend a discharge class to teach us what to do and not to do once I get home. Although we've been through this twice before we have to exercise more caution because this was an allo transplant and I am on immunosuppresants. Much as I want to jump back into the full flow of life I guess I have to proceed slowly.

We see the doctor on Tuesday and should have a better sense of when I can return to Denver.

Love to all,

Dan

And On the Third Day He Collapsed

Yes, it seems that reservoir has about a 2 day supply of energy, at best. The game last night was fantastic. A bird's eye view of all the Cubs, even Lou Pinella's scowling face. But the back to back days of partial activity left me exhausted today and my neuropathies throbbing. A day of rest should take care of those issues. It's apparently going to be a long road back. Today this 57 year old is feeling his age, hundreds of doses of chemo, and three transplants. Tomorrow's another day. Onward and upward.

Reality Check

With all that new found energy I ventured out yesterday. We headed to the Galleria, Houston's upscale shopping center (also known as a mall). I brought Susan along to help craft my new style. You see, I haven't bought any new clothes in about 5 years, since all this nonsense started. Something to do with the fact that my weight has fluctuated 65 pounds, depending upon my intake of steroids and a variety of other factors (like a month in the hospital or other weight losing efforts). Although I must admit that Susan and Julia did buy me a couple of "hospital shirts" at Walmart in Little Rock. Anyway, off we went to find bargains in keeping with the new Dan. That would be the guy with the shiney dome, a struggling goatee, a shorter stature, and numb feet. Well, we've started the transformation and it doesn't include low riding jeans with plaid boxers showing through. It also doesn't include new shoes, as the numb feet make trying on footwear an unpleasant experience. You'll just have to wait to see. The point of this is that after 3.5 hours of shopping my energy disappeared faster than a perfect game in the hands of umpire Jim Joyce. I could hardly make it to the exit to get in the car and come home. Whoa!

But never one to be deterred, today is a new day to test that energy level. Only today (or tonight) Gary and I are headed to an Astros/Cubs baseball game. Prime seating thanks to Gary's connections will find us in the row immediately behind the Cubs dugout. This is all being done with doctor's permission. In fact, when I asked the doctor if I could go to the game, one of the nurses in the room started laughing and said she had been in my hospital room 2 months ago when I was continually pleading for permission to go to the Astros/Rockies game about 3 weeks ago. Permission was denied at that time. In her words, "you never give up." Now I don't know what difference 3 weeks can make but giving me permission only encourages me to continue in my pestering to go home early. Of course, the fact that I now have a different doctor wouldn't be a factor, would it? My attendance won't be without ridicule. Gary has already said we have to leave early to allow time for Chester to walk from the car to the ballpark. (for those who don't understand the reference to Chester, ask someone older than you who used to watch Gunsmoke).

Anyway, I feel that I have more energy but the reserve isn't very deep. Rest assured I'll keep at it.
Go Cubbies,
Dan

The Awakening

I've been amazed after each transplant at how tired I am. As my earlier posts noted this year I was sleeping 18 hours a day when first discharged from the hospital. It seems that the fatigue is cumulative, i.e., each transplant seems to bring along 30% or more of the fatigue from the prior transplant. So I operate in this fog for weeks/months and don't even realize it. Then boom, I wake up. This week I felt a bit of the awakening. On Tuesday I woke up at 7 a.m. Unheard of for me. And more surprising, I didn't need a nap until late afternoon. Although I slipped one day and slept the better part of the day, generally I've had more energy this week, which is very encouraging.

I used this extra energy to continue to work my "team" for an early release. So far no success, but the nurse practitioner in charge of my care showed some signs of bending today. I'll keep on the pressure.

That being said, I am very grateful for the care I have received. They are very careful here in terms of avoiding unnecessary exposure to infectious environments, adjusting meds, pushing me in physical therapy, etc.

I'll start a maintenance dose of revlimid (5 mg) in the next few days for which I'm very happy. Although Mike's cells have fully engrafted I still have myeloma protein in my blood. I don't fully understand how I can continue to have myeloma when I have someone else's stem cells. But the revlimid should help reduce the M protein and guard against progression of the myeloma. A new clinical trial is showing the effectiveness of revlimid maintenance therapy following transplant. I don't qualify for this trial (I think because I was on revlimid prior to transplant), but that only means I don't get the drug without cost. My insurance will pick up the bulk of the $3800 monthly cost (my copay is around $60 I believe).

I think after this is all over I'm going to start a pharmaceutical company. In addition to the $3800 cost of the revlimid, I have an antibiotic to help prevent pneumonia that costs $3000 and an antifungal that is of similar cost. Those are monthly costs. Fortunately I only have to pay the copay. But that's only 3 drugs and I take about 12 pills a day. Monthly prescription costs probably run around $15,000 a month. Any venture capitalists out there interested in investing in Patterson Pharmaceuticals?

My blood counts and blood chemistry continue to be solid. I need less and less fluids and may soon be discharged from my twice weekly clinic visits, but still confined to Houston. Each milestone is another step towards Denver. Soon enough.
Until then, thank you again to everyone for your love and support.
Dan

100% Mike

About 30 days ago they tested my blood to see what percent were Mike's cells and what percent were mine. I learned this week that Mike's cells have taken over. Of the cells tested 100% are Mike's. They have run the test again this week and we'll know the results in a few days, but don't expect much of a change, if any. I have no idea how they know one person's blood cell from another's, but they do. This is the goal--to have complete engraftment of Mike's cells. So it looks like we've accomplished that. For the sake of my own reputation I would have preferred to see my cells hold out a little longer instead of just rolling over for the Big Fella, but so be it. This transmogrification also explains some recent quirks in my behavior, to wit, being much more obnoxious, constantly straightening up the house, eating only a vegan diet, a feeling of superiority over other human beings, and an insatiable craving for a drink. No coincidence that these are traits of the Big Fella.

Plans are underway for my return to Denver, although it's still 3 to 4 weeks away. Susan and I have an appointment for a discharge class where we're going to learn everything necessary to keep me healthy once I leave the care of MDA. Having gone through 2 transplants, I suspect we know most of it, but they won't let me leave until we attend the class. I'm also wrapping up my physical therapy, continuing to stun them with my peak performances. And I have to have a complete pulminary workup but that has been delayed due to my cough and para influenza. We had hoped to get away for the long weekend, by going to San Antonio or Austin or to visit Mike, but they scuttled any travel plans---you must stay in the Houston area. Hmph.

That's about it. Not much new. Have a pleasant and fun filled Memorial Day weekend.
Dan

Hotter Than H ouston

I can't believe I haven't posted for almost 2 weeks. How time flies when you're doing nothing. Then again....So here's the latest. First the weather: Houston is hot and humid (90 degrees, 94% humidity) and it's only going to get worse. The heat sucks the energy right out of me so I've just about taken to staying inside. I'll get my walks in by going to a Super Target or Costco or someplace like that---with air conditioning. I also go to physical therapy twice a week. Those "workouts" are an embarassment to anyone who considered himself an athlete at anytime during his life----like me. But they are about all I can handle right now. According to their data I'm doing very well. Of course you must remember that their data is compiled from people with wheel chairs, missing limbs, paralysis, and octagenarians. But I'm at the top of my class!

I've come down with the crud once again. Seems to be at least a twice a year occurence. The official diagnosis is para influenza, described as a cousin to the flu. I don't have a fever or other symptoms. The doc doesn't seem concerned and says we'll just have to let it run its course. My M protein (a key indicator of degree of myeloma) remains at 1.75; same as where it was in early March. Blood counts are generally good, although I received a transfusion yesterday as my hemoglobin is down a bit. That was my first transfusion since I was discharged from the hospital, which is great. By comparison, I believe I had about 20 transfusions at this date while in Little Rock and then another 5 or 6 in Denver. They will be reducing my anti rejection meds soon, as well as starting me on revlimid I believe.


This weekend I won't have to take any additional fluids. They tried this a couple of weekends ago but my creatinine spiked up (a measure of kidney function), so they put me back on daily fluids. Creatinine has started to go down so we'll try this again.


Susan returned from a long weekend to NYC. It was her first visit to see Catherine in the Big Apple. Of course they had a great time, walking through Times Square, around Central Park and throughout the city. We were both struck by the cycle of life, as Catherine is having the time of her life living in NYC, as Susan was when I first met her. Susan derives great joy seeing her daughter living that life. It was a busy weekend for Susan as she also worked in visits with her cousin Arlene, daughter Stacey and Sigun/Joe and her good friend Hildi. Julia drew the short straw and had to come down to Houston to "cover" during my caregiver's absence. Julia, Gary and I made the best of it by sampling some of Houston's restaurants and discovering the best ever frozen yogurt shop--Red Mango.


That's all for now.

Much love to all,

Dan

Getting Rid of the Roach

I feel compelled to write another post just to get that creepy roach off the screen. Everything remains stable, so much so that they cancelled my clinic visit on Thursday. I'm still technically on a 2 day a week schedule to be at the clinic. I can't adequately express the relief in not having to go to the clinic every day. Those times and the hospitalizations make me feel as if my life is nothing more than getting treatment, 24/7. Now that my visits are less frequent I feel like I'm gradually returning to life. We've been out to lunch and dinner. I even went shopping with Suz yesterday. Of course I needed a nap after that outing!

We continue to be guarded about my recovery, having been burned by bad news more than once. That being said, this feels different. I am so relieved my counts are stable and that I haven't gotten really sick. I am very happy with MD Anderson and the way they run their clinic. I am also very pleased that my doctors have a longer term plan to keep attacking this disease. They've discussed with me two new clinical trials as possibilities to further reduce the myeloma. I feel better than I have in a year and a half (must be due to those weeks when I was sleeping 16 hours a day). I continue to lobby for early release but my doctor isn't giving in (not yet anyway). We're still looking at a return to Denver sometime in late June.

Happy Mother's Day to all you moms who are reading this, especially my mother, who prays for me daily and repeatedly assures me I'll be OK. Mothers know about those things so I'm sure she's right.
Love,
Dan

Our First Kill

Houston's reputation for heat and humidity is well known. What is less well known is that there is a foreshadowing of this season. Just before the heat and humidity arrive, their appearance is announced by ROACHES. Egad! We have nothing like this in Colorado. Not only do they come in Super Size, but they Fly. YIKES. This morning Susan woke me up and asked that I take care of a roach in the other room. Yes, my first kill. Smashed beneath the heal of my shoe and later flushed down the toilet. But before it disappeared I did what Julia has taught me to do: document the roach. See above.

On a more positive note, the doctor told me today that my visits to the clinic will now be reduced to twice a week and there will no longer be fluids infused at home. Freedom is being dispensed in small increments, but nonetheless it's coming. My blood counts continue to be stable. I need an occasional neupogyn shot, but other than that I am producing cells almost like a normal person. And I feel pretty good these days. My sleeping is down to a mere 12 hours a day and the GI issues are slowly resolving. There are plans for further treatment, such as another infusion of Mike's cells, but for now, things look good. We still have a few hurdles to get over but everyone seems pleased with the progress thus far.

As always, thank you for keeping us going.

Love,

Dan

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