Today is a milestone. 75 days have passed since I received my bone marrow transplant. There have been easy days, hard days and really hard days, but as I try to remind myself (sometimes more successfully than others), they’ve all been good days.
For the past couple of weeks my transplant team has been trying to figure out why my bone marrow won’t produce platelets. The number has gone downhill ever since I left the hospital. Absent an unexpected surge, I’ll do an early bone marrow aspiration on Friday in the hopes that it will offer a clue. If I’ve understood Dr. Hosing correctly, she’s confident they will eventually figure it out. And the good news is that as of now, this shouldn’t delay my going home to Omaha.
Today has been a fairly good day – I’ve had more strength than I’ve had in a couple of weeks. And although I really do try to be mindful that every day is a good day, it’s hard sometimes to not feel despair when it takes a seemingly monumental effort to just get out of bed to go to the bathroom or to get dressed in order to get to the clinic in time for an appointment.
Anyway, 75 and counting. Omaha, here I come. (Will I recognize the place after being gone for seven months?)
(Posted on Dad’s behalf.)
I haven’t been very good about keeping up, about keeping you informed, have I? I wrote a couple of pieces that somehow vanished and never made the blog. More than that, I don’t know that I have anything coherent to say. So much of the time I feel like I’ve lost my way – what’s it all mean type stuff. I do a lot of praying, hoping that I’ll gain some understanding of all this.
I spend every day getting IV Therapy at the clinic (anywhere from 3-6 hours) and then collapsing on my bed at home because I’m exhausted and have no energy. Happiness is a grab bar by the toilet. I keep thinking I can’t possibly lose any more muscle mass, but have now achieved a level where I could easily pass for an Ethiopian old man.
In short, I had no earthly idea that recovery would be such a challenge. Nor did I realize that the 100 days recovery was strictly an arbitrary number. It could just as easily be 120 or 150 days. The good news is that my doctor says I’m on track to return to Omaha in early December. But no guarantees.
I’m looking for easy and easy is somewhere far, far away. Maybe throwing myself a pity party is part of the process, but I know I’ve got to move on and gain some focus.
Speaking of focus, I’ve begun reading “Fear And Loathing In Las Vegas”. I’m a chapter or two away from giving Ms. Lohan another chance.
I still get cards and e-mails from many of you, which I find amazing. Thank you all for caring so much. It’s a humbling experience.
Nov. 8 is day 75. Ideally, that’s the 3/4 mark. I’ll try to update more often during this last month.
In the end, there was little reason to be so stressed out over the unknown of Rita. My brother and I made all the adjustments we could. It wasn’t enough to put my mind at ease, but by midnight it was clear the worst of the hurricane went to the east of Houston by about 50-75 miles.
So we “endured” some wind with gusts up to maybe 60-75 mph. There were moderate amounts of rain, but nothing that even allowed for an occasional puddle. The power never went out. Our greatest inconvenience was that the local TV stations were off the air until mid afternoon. We were left with only cable stations.
By 2 pm the day was sunny and warm with occasional gusts of maybe 20 mph. There was no hint that it had rained that day. No doubt about it, we were very fortunate. Thanks to Winston and to Zach’s friends for all the little hints on how to survive Rita.
One more obstacle (well, potential) overcome. Maybe next I’ll achieve the strength of a ten year old, who knows? Thanks for all your well wishes. Although I don’t act like it, your thoughts really do mean the world to me. I hope one day soon I’ll be well enough to come home. Advent can’t come soon enough this year.
Thank you all very much.
I haven’t written anything for a while because I haven’t had the strength, desire, coherent thoughts to write. The only reason I’m attempting this is to fill you in over the past few days.
I was released from the hospital on the 16th = a week early. I still, however, have daily trips to the hospital that last anywhere from one to five hours.
Thoughout much of this time I have been very nauseous and very weak – barely able to walk 20-30 feet. I should be exercising more, but but I’m unsteady- fearing that I will fall, I am usually filled with despair. And then there is that omni-present nauseau.
In spite of the above, I am making gradual improvement. But I am still filled with despair, This is so not who I am – a frail, hairless little man who walks like he’s 80 years old.
And now Rita. My brother is here with me (do I need to explain that Rita is a hurricane and not my brother’s name?), which is a very good thing. But we’re both novices at this hurricane stuff . My treatment at the hospital today precluded making a run for it. I’m now fairly convinced that a run attempt, no matter when attempted could have had serious health implications for me.
So now I quess we’ll see if we made a smart decision. We don’t have any flashlights, we’re very low on milk, but we do have half a dozen biscotti and countless whirley-bird toys to shoot into the 140MPH winds.
Thanks for everyone’s kind words and thoughts. I’m most appreciative of each of them. Beyond that, please pray for my brother and me. We’re in need of all the spiritual help we can get during the next three days.
On Thursday, August 25, Rick received his transplant. It was pretty anticlimactic as compared with the preparation. At around 6:45 p.m., the nurse announced they were going to start the pre-meds. At 7, they started infusing the new bone marrow and by 7:20 p.m. they were done! Twenty minutes! The nurses and doctor had several emergency measures – drugs, equipment, etc., standing by – but none were needed. (The marrow is infused through the CVC port which Rick has in his chest – somewhat like an IV – no surgery involved.) The doctor endorsed the procedure by declaring it, “boring!” We like boring – nothing out of the ordinary or unexpected.
I got this report primarily from Zachary who is doing a spectacular job of caring for Rick during this tough time. Rick is exhausted because, of course, he has very low blood counts. And they still keep him rather busy in the hospital – hourly breathing exercises (to prevent pneumonia), hourly gargling (did you know your mouth is a prime source of infection?) and as much walking or sitting up as he can do. The last few days it has been difficult for him. Zachary told me his white cell count today is 0.0. The nurses say it takes some time for all of the counts to go up – and they will go up and down for awhile. That’s why he has to stay in the hospital for another four weeks or so.
Rick’s donor (bless him, whoever he is) is 23 years old. So we have been teasing Rick about getting new 23-year-old blood. On Saturday, Zachary put together a gift basket for him – filled with things that 23-year-olds like to eat. (Don’t ask me – I haven’t a clue!) I think it involved Ho-Ho’s, Mountain Dew and Beef Jerkey. Very clever! Rick didn’t seem to crave it, though. I guess the new cells have to grow more.
Rick asked me to let you all know what’s going on and to say that he will post again as soon as he is able.
Oh yes – one more thing. The day after the transplant, Rick told me he had an odd dream. He dreamed that we were packing up the things in our apartment to move back to Omaha and he realized he was packing our Easter decorations. He thought to himself, “Why did we bring Easter things down here?” I just said, “Easter…hmmm.”
Well, here we are. I go in the hospital tomorrow and all things seem to be going well. Beginning tomorrow, there will be no more fresh fruits and veggies for me. Also, no salads, no flowers or plants. My CVC line was put in without any problems. By this weekend, the nurses will begin using that line to deliver chemo.
The next couple of weeks could be a little rougher than I’ve said to a few of you. Although my radiation treatment showed that worst case scenario doesn’t always come to pass, I think I will have to be disciplined to get out of bed every day and walk around the hospital floor.
I had my last meeting with Dr. Donato today. Her parting advice to me was the biggest impact I can make on all of this is compliance – follow the rules. I’m asking all visitors and care givers to please avoid contact with me if you have so much as a scratchy throat. Something that minor could have the worst implications for me.
For those of you who are interested, I was given information about the transplant that is not consistent with the information that I had passed on to most of you. So, to clarify things . . .
My donor will have his marrow harvested in his home city next Thursday. He has no idea that I am a patient at MD Anderson. That same day (Thursday), the marrow will be shipped to Houston and delivered to me much the same way as a blood transfusion. I have been told by more than one person that the actual BMT will seem anti-climactic.
On to more practical matters: either Z or I will post my hospital phone line on this blog when we know it. I will be able to use my cell phone in the hospital at times, but no guarantees. My address here at the apartment will still be good.
That’s all for now.
If they ever remake ‘The Magnificent Seven’, I have debs on Yul Bryner’s role.