1 year minus 1 day

Tomorrow will be one year from my transplant. It will also be my liver biopsy so I may not be able to post. I also may not be able to eat much so I went out and celebrated today. I bought 2 new charms for my bracelet: a 4 leaf clover and a World Health charm. I think that about sums it up, good health and good luck. Mom & Dad and I went out and ate steaks and enjoyed a glass of wine. Topped off by DQ Blizzards for me and Dad. (Really we're rednecks! Who else goes from a fine steakhouse to the Dairy Queen?) Here's a picture that is kind of dark, but still good. I will remark here how lucky I am to have had such attentive, careful and loving caregivers.

The last couple of weeks have been up and down which I think is what you call normal. I have been feeling very rebellious about the pills. I am really sick and tired of the pills. I actually threw them in the trash one night. It's difficult to swallow. There are a dozen or so to take. 4 are enormous and 2 more are awkward. (I know...some cheese to go with that whine?) Anyway about 3 days of skipping pills and I started having pains I hadn't had in a long while. That is some incentive to get back on the pill regimen. I dread it every time. I procrastinate. I take them in the morning last thing before I leave the house. I take them at night last thing before I go to bed. In the meantime, I fret about it while I'm procrastinating. I think I could write a sitcom. Or at least a few short pages of a neurotic performance. One time a pill stuck in my throat and I could not get it down. My mouth began to taste like old fish. I think this is the folic acid pill to make my feet tingle less. Which it does, but I really hate the taste of old fish. Ah well. It's not likely to change for a while. And I sure don't have much trouble taking a pain pill or a sleeping pill. So it's as much neurology as physiology.

Other notes about the current state of my body. My nails are all breaking off, but still growing as if they've been fertilized. I need a pedicure every 3 weeks instead of every 6. I need a pedicure because I cannot comfortably reach my toes to do a number on them. In fact putting my socks on in the morning is an acrobatic performance. Perhaps not as ridiculous looking as attempting to get my britches off at night, but all amusing. I think the effects of the cortizone cream must be cumulative because my skin stops hurting and being very sensitive so I stop using the cream. Pretty soon, it hurts again. A fellow survivor told me that she wraps up in cling wrap at night, or has her husband wrap her. Slather with cortizone cream and wind up the cling wrap. The mere thought of wrapping myself makes me cringe with pain, but I may spend a few nights at Mom & Dad's to try this bit of therapy.

I have mild sores in my mouth which is a little bit dry. Inside each cheek I have very prominent ridges representing graft v. host. I keep a bottle of salt water by the sink and every time I wash my hands I rinse my mouth. This helps. Some things don't taste good like they did before I got sick. Wine and scotch for example. Other things that I wasn't crazy about really hit the spot, such as wheat beer. I think the mouth problems are related to the pills because during my rebellion things began to taste really good. And the dryness was less noticeable. Mere procrastination does not bring on this bit of relief; it must be a full fledged rebellion.


Mark came to visit for a weekend and put up shelves for me. I now have a mantel on my fireplace. I live in a split level house built in 1967 when "The Den" was king. The really nice houses had a den with wood paneling, rough hewn
ceiling beams and a big brick fireplace hulking over it all. Cozy I think was the word. The fireplace in my house, moreover, was placed square with the front door which blows any hope of symmetry in the room it illuminates. A couple of years ago Mark tore out the bricks and we put up wallboard and sconces and installed an electric fire. I love the electric fire--two punches on the remote and I have fire and heat. One more punch equals more heat. It looks real enough that people come in the front door and worry about the embers burning. Just after I got sick in 2008 my niece and her husband tiled the surround and now I have a mantel. Herewith the before and after for your viewing pleasure. Other home improvement tasks include replacing a light fixture by myself standing on a short ladder with my hands and arms up over my head. Take that lady physical therapist!

I continue to see friends and work. I work at least two hours every day. They are not all billable but they are productive. I am sharpening my mind, honing my troubleshooting skills and I am happy, well thrilled, that messing about with computers still charges my battery. I have a couple new customers, very small, but it gets the juices running and that's what I want. I look forward to being able to make a living again. Work long hours and late ones when called for.

Friday I went to eat Indian for the first time since I got well. I used to love a good curry but it did not hit the spot Friday. I switched to less spicy foods for lunch, but the damage was done. My belly suffered and my weekend social plans all went down the tube. Or perhaps I caught a mild bug somewhere even though I've had every kind of flu shot and immunization known to my doctors.

I saw Dr. Aljitawi last week. My counts are good though the platelets continue to drop. As with the other providers he wasn't worried about this. (The guy doing the liver biopsy tomorrow might worry but that remains to be seen.) Aljitawi said that if the liver biopsy shows what they expect, that the problem in my liver is caused by too much iron from too many transfusions, then I will start giving blood. Every two weeks or so they will drain a unit of blood until the iron returns to an acceptable level. I assume this will also drop my hemoglobin so I'm curious to see how long my body takes to rebuild those hemoglobin levels. My ferritin level was 3793 a month or so ago, and normal is 10-200. The human body simply cannot process the abundance of iron that comes with many, many transfusions. The iron builds up in the liver and causes problems. Without action, the iron does not return to normal levels. It requires intervention to reduce the count.

I listen to providers talk about options and next steps and I am struck by how fortunate I am to have this team of doctors and nurses who are creative and responsive. What an interesting field to be working in! I remember when I was in the hospital in February, 2009 with pneumonia and just could not catch a break. Dr. Abhyankar came in one day and said "we're running out of things to try." The next day Dr. McGuirk came in and the team had had a meeting and tossed about ideas and one stood out. They called other transplant centers who agreed it was worth a try and it worked! My poor old marrow began coughing up enough white cells to beat up the pneumonia and get me out of the hospital.

So it is a process of action and reaction. We are reaching the point in my recovery where we can be a little bit proactive, but most steps are still based on today's test results. Next Tuesday, July 6th, I have the "1 year workup." This consists of a pulmonary function test, drawing about a quart of blood (well it's 30 tubes or so,) and a bone marrow biopsy. I have an appointment to get the results on July 19th. I am still visiting the clinic every 2 weeks and Dr. Aljitawi mentioned extending it to 3 weeks, but he didn't do it. As a side note, there is a new phlebotomist at the clinic. His name is Carlos and he kneels to take my blood. I love him because he is the most painless sticker I've known. Or perhaps because he is adorable and kneeling before me.

Step by step. Lots of gratitude. Lots of wonder. and last but not least, lots of fun!

~Cathi