Wednesday, March 31, 2010

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,

Tuesday, March 30, 2010

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,

Sunday, March 28, 2010

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.

Tuesday, March 23, 2010

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,

Sunday, March 21, 2010

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,


Thursday, March 18, 2010

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.

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

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.

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.


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.

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,

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,

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,