100 Days

Posted on Saturday 3 December 2005

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 00 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

Rick @ 11:15 pm
Filed under: Updates
I’m Coming Home.

Posted on Monday 28 November 2005

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

Rick @ 11:06 pm
Filed under: Updates
DAY 93

Posted on Saturday 26 November 2005

day96

z @ 5:10 pm
Filed under: Updates
UPDATE

Posted on Friday 18 November 2005

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 http://screenworksjax.com/how-can-i-buy-viagra-in-toronto-ontario-inr/ 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

Rick @ 7:25 pm
Filed under: Updates
LARRY

Posted on Friday 11 November 2005

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 purchase albendazole 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. compare hotels . 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

Rick @ 11:50 pm
Filed under: Updates
A WIMPY ENDING

Posted on Friday 11 November 2005

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

Rick @ 7:23 pm
Filed under: Updates
BEING GRATEFUL AND GIVING THANKS

Posted on Tuesday 8 November 2005

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

Rick @ 6:12 pm
Filed under: Updates
75 DAYS

Posted on Tuesday 8 November 2005

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?)

Rick

Rick @ 5:48 pm
Filed under: Updates
I’m Still Here

Posted on Tuesday 1 November 2005

(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.

Rick

z @ 10:02 am
Filed under: Updates
Much Ado . . . .

Posted on Sunday 25 September 2005

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 http://sellinginabox.com/there-shortage-alli-81/ 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.

Rick

Rick @ 1:03 am
Filed under: Updates
'