100 Days

This will probably be pretty brief because I don’t know that I have much to say, but today is my 100th day after transplant and I thought I should note it.

It’s fair to say that I was clueless about what this would involve. I don’t know why that would be – I read everything I knew to read. But I truly believed that at 100 days there would be some magical snap of the fingers and everything would be back to normal, as if I hadn’t even been through the process. The truth is that this is an on-going process and I could still have transplant concerns a year from now.

When I look at the past 100 days, I realize I’ve made tremendous progress, but I still have a long way to go. Return to normal? As one care-giver said, “Normal is a setting on your dryer.”

I have an opportunity for a new life, of sorts. It seems pretty amazing to say that, doesn’t it? Cancer doesn’t have to be a death sentence. I am one of the fortunate ones who can say that and believe it. 100 days ago I couldn’t stop scratching myself because every square inch of my skin itched. 100 days ago my skin always hurt, as if I were suffering from a bad sunburn. Just average touches from other people, like shaking hands, hurt. 100 days ago I was always cold, even in rooms that other people felt were uncomfortably warm.

All of that just went away. It happened so suddenly that I didn’t even notice it – someone had to point it out to me.

The bad days are the ones filled with doubt. Will I get better? Why aren’t I improving faster? What will it mean if something unexpected happens? Transplant isn’t a course of action for diehard pessimists.

The good days are when I can see or feel the improvement.

As far as I know, my last day is still Monday. I’ve developed a rash on my face, which my doctor thinks could be GVHD. However, she said that if it doesn’t get any worse, I should still be able to go home. Since Tracy has given notice on the apartment, we both are fervently hoping for a sanctioned dismissal. Otherwise we may have to resort to a breakout.

So, I guess I acknowledge the 100 days as a milestone, but the journey continues. Here’s hoping I make good use of the journey.

Rick

I’m Coming Home.

I met both with Dr. Duvic and Dr. Hosing today. Dr. Duvic is happy as a proverbial clam. No t-cells, I’ve taken on all the characteristics of my donor and I am cancer free. It’s all good.

Dr. Hosing is pleased that I am finally growing new platelets. In the last 8 or nine days, my platelets have gone from 10 (thousand) to 11, to 19, to 29, to 42. As long as things continue as they have been in the last week, I am excused from Houston Dec. 5. Tracy and I will begin the drive to Omaha on Tuesday, Dec. 6. I can’t begin to describe how happy this makes me. It may still be awhile before I return to my old routine, but I will be home.

Zachary flew to Houston for Thanksgiving and we had a nice family get-together. He made it safely back to Pittsburgh and is preparing for job interviews with Microsoft and Google next week. Wish him luck, although I kinda think he doesn’t need it. Oh, and did I mention I’m going home? 🙂

Rick

UPDATE

I had a bone marrow aspiration done last Friday (11/11) and it shows that there is something in my marrow that is adversely affecting my platelets, but the doctor’s aren’t sure what it is. It could be due to the fact that my donor and I were different blood types and my old blood type is fighting the new blood type. It could still be viral, but the virus is unknown if that is the case. It could be GVHD, (graft v host disease) but it isn’t presenting itself as such. Or, worst case scenario is that I’m rejecting my donor’s marrow. I’m being treated with heavier doses of IVIG (immunoglobulen [sp]) for the next few days.

I’ll keep everyone updated as I find out more.

Rick

LARRY

I had a bone marrow aspiration done today. Dr. Hosing is hoping it will explain why I’m not producing platelets. When I found out that this was going to happen, I told my team that the last aspiration I had done was administered by a real artist, one who had made the experience almost pain free. When I told them this guy was a tall African-American man, all three women said simultaneously, “Larry.”

I felt good knowing his name. I felt empowered, if you will. My plan was to walk in to the aspiration clinic and insist on Larry doing my procedure.

Which is exactly what I did. The receptionist said it would be no problem as long as Larry was still working. I recognized him, the man who had done such a great job the last time, as he got another patient just a few moments later. I felt good. Larry was in the house.

When it was my turn, one of Larry’s assistants came to take me back to the appropriate room. I walked in and there was this African-American man who wasn’t Larry. Or, more accurately, there was Larry, who was not the same gentleman who had done the procedure last time. My Larry was a much younger guy. Also, my Larry is most likely not named Larry.

The best laid plans. . . .

By the way, Larry did an outstanding job.

Rick

A WIMPY ENDING

This happened a couple of weeks ago, but I never shared it, and as lame as it may make things here seem, I should still share.

You all remember my story about my cell phone making a run for freedom and never looking back (i.e., being turned in). I got quite a few comments about that entry.

A couple of weeks ago, Tracy’s sister Melissa and I were leaving the clinic. As we approached the car, I opened the back door to put in my bag that I carry around and there on the back seat floor was . . . my cell phone. Sigh.

The lost one. The one that I was convinced had tried to escape but in truth had apparently slipped out of my pants pocket and never left the car. Why in the world I retraced every step I took in the hospital trying to find this phone, but never considered thoroughly checking out the car, is a mystery. Or drug induced forgetfulness.

So now I have my old cell phone back. What a wimpy ending.

Rick

BEING GRATEFUL AND GIVING THANKS

I have had so many wonderful people in my life who have cared for me or offered support or just sent words of encouragement and although I have offered thanks on this blog in the past, it never seems quite adequate. I don’t know that it ever will. I would like everyone to know how humbled I am by all you have given me, but saying thank you just doesn’t seem to take care of things.

But I still say the words, feel the gratitude, hope that people understand that I am ever mindful of what each and every person has done for me. Sometimes it all brings a smile to my face, sometimes it makes me cry, but that gratitude is always with me.

MD Anderson allows transplant patients to send what amounts to an anonymous thank you card to their donor. I was reluctant to even try, frankly, but finally did send a card about two weeks ago. Thank you seems like such a weak thing to offer in response to such a huge gift, but that’s what I wrote and hoped that the donor understands that although my words might be limited, my gratitude is not.

In the last six weeks I have had some excellent care givers whom I’ve not acknowledged here. They all waited on me, as the saying goes, hand and foot. Thank you to Barbara Goodrick, Deb Kirwan, Melissa and Wendy. I know it’s not easy trying to know what to do with someone who doesn’t communicate a lot and stays in bed most of the time. I appreciate all your efforts.

Rick