Tiles of Hope and 1 yr workup

Today I hit the hospital and the clinic for my "1 year workup." The tests went as expected, but things happened that were thought provoking.

I started down at the hospital for a Pulmonary Function Test and that went well. The technician said my numbers were higher than last time. Hopefully this means that the GVHD is abating perhaps a teensy bit. The tech also mentioned that she had seen some patients whose lungs were really compromised by GVHD. Now, how lucky am I? My lung function is over 100% of normal. I was frustrated after the last one because it was only 115% or so instead of the pre-transplant 150%. I had a horrible time with my lungs after I got leukemia and I often asked if people with these kinds of lung problems ever recovered completely.

But I am one of the lucky ones today. I remember well not being able to suck in a proper breath when I was in intensive care. I was so irritated! I thought "I know how to breathe. Several different kinds of breath. And I can't do any of them." Today I do not ever have to gasp for breath.

Then I headed for the clinic for the blood work and bone marrow biopsy. I stepped off the elevator on the 3rd floor and there is a board with "Tiles of Hope" on it. I looked it over carefully and sure enough, there was my tile. Tiles of Hope was a program held at the clinic in December after I had the news that the graft was slipping and before Christmas. Patients and clinic staff had the opportunity to paint a ceramic tile with the design of their choice. I was worried I would not be able to go to Chicago for Christmas; the BMT team was pulling out all the stops to make sure I would. On the one hand I appreciated their efforts, but this fella at the conference table in my head was shouting "It's because this is your last hurrah. You're not going anywhere else after this."

So I got him shut up for a bit, and boldly painted a globe with a distorted map on it. An oversized Italy and Florida. Big black dots for Captiva Island, Chicago, Florence and Rome. I wrote "the world at my feet" and added some ruby slippers at the bottom. Mom gave me a pink Life is Good hat with a globe on it and when she handed it to me to cover my bald head, she said "Cathi, you have the world at your feet." I remember nurse Maurya sitting with me while I painted. As we walked back upstairs, I confided my fear that this was my last trip and she looked at me with complete sincerity and said "oh no. This is not your last trip. You're going to be going to Italy and to Florida." I believed her. So here is a pic of the entire board and of my little tile.

I marvelled this afternoon at the difference in me between when I painted that tile and when I spotted it today. I have been to Chicago three times! And I have a trip to Italy planned in October. I am one of the lucky ones.

Abby did the bone marrow biopsy and answered all my questions. The results of the liver biopsy showed nothing more sinister than GVHD and too much iron. I will find out later next steps for the liver. She counseled me to eat more protein, not because the number is low, but because I'm still having trouble with my feet swelling. So I reckon I will add a protein shake to the daily regimen. My hemoglobin was 11.8 today, something of a relief to me. It has dropped the last couple of times and that makes me nervous. My platelets were still 73 which Abby was happy about. She laughed and commented that other hospital departments went nuts when platelets were that low but bone marrow doesn't worry til they are much lower!

The liver counts have improved a little since they increased the dose of the medicine I'm taking for it. Other counts are beginning to hover around normal. I am very lucky.

Nurse Jenny in the biopsy room said I might not see her for a year now! I can't imagine going a whole year without a bone marrow biopsy. But Jenny and I will keep in touch via Facebook. Nurse Lauren drew my blood today and announced she is getting married in 10 days. Lauren was on the night staff at the hospital when I first got sick. She took care of me as I was getting very sick, running high fevers, and needing all kinds of care all night long. I ran into her often throughout my recovery but it seemed like every time I asked about a beau, she had just had her heart broken. I quit asking--I just hated to bring it up. So this was great news to hear, though I'm sure my son, Mark, will feel just a twinge. He thought Lauren was "hot."

So this day has given me many reasons to be grateful. I have pains and I am still weak, but I am getting better every day. I have lovely curly hair that I am enjoying. They tell me the curl won't last forever--just a couple of years. I went to a couple of social engagements over the long weekend and enjoyed myself, but I lasted for the duration of the parties. Today is Walt's birthday and I am so grateful that I have such a generous brother. That my entire family is so generous. It was very soothing when I was very ill, to know that my family was all pulling together for me.

And did I mention that my hairless days are over? I must shave my legs every day to wear shorts!
~Cathi