Day +302: A voice says, hi, hello, how are you…

“Well, I guess I’m doin’ fine”

Thanks for all the encouraging words in response to my last post! I’m feeling much better this week. Dana, your peanut butter pie was a huge hit at the party. Speaking of the party, it was a big success with 26 in attendance, including ourselves. Although showers were forecast, the weather cooperated with not a raindrop in sight for the duration. The outside temperature remained in the comfortable upper 70s, although it was very humid. We had a lovely assortment of delicious food, and everyone played nicely together. A good time was had by all. I’ll post a few photos next time I’m at the computer (on the iPad now).

Yesterday, I went to the dentist to have two small fillings replaced in my lower front teeth, apparently unrelated to my MDS or transplant. They fell out for some unknown reason. Ridiculously expensive! Plus it was disappointing to have a dental visit more than two months sooner than expected.

I saw my hematologist today for the regular mid-cycle appointment. He says I’m doing great and was pleased that my weight finally held steady for a month. I confessed that this was accomplished by adding an extra ice cream to my daily breakfast shake and eating more chocolate truffles every evening. “Regular” food continues to be difficult. I also still have the itchy red spots on my face and ears but my energy level is good. My blood counts are looking very good:

WBC: 3700 (norm 3000-11200)
Granulocytes (~ANC): 2200 (norm 1400-9200)
Platelets: 259 (norm 150-450)
RBC: 4.14 (norm 3.90-4.90)
HGB (hemoglobin): 14.3 (norm 11.5-14.3)
HCT (hematocrit): 41.9 (norm 34.0-42.2)

I told the doctor about my plans to participate in the NIH cGVHD study in October. He replied that my willingness to help with the research is terrific. He did a rotation at NIH during med school and says a lot of very intelligent people study and work there, and he thinks it’s probably the best cancer research center anywhere. I’ll post more details about the protocol once I’ve been confirmed as a participant.

We’ve been making weekly trips to the vet with our “oreo cat” (Dory Alexander) due to a large ulcer in his left eye that isn’t healing properly. He also has a cloudy area on his cornea. One of the treatment drugs is Tacrolimus; coincidentally, I recall this is a drug that’s also used to treat GVHD. I haven’t done much reading on it yet but believe it’s an immunosuppressant.

We’re having a thunder storm as I write. I don’t wish flooding or other destruction on anyone, but I truly enjoy the rain and particularly the storms. Lucky for me in light of the weather here for the past month or more.

Last post’s tagline was identified by Heather:
Borderline, Madonna

4 Comments:

  1. I enjoy a good storm too.
    I think chocolate truffles and ice cream with breakfast sounds divine–much better than the Luna bar I typically eat.
    I look forward to hearing more about your clinical trial.
    -Heather

  2. Good that you are finding something you can eat! The prednisone I am on is making me look like I am 9 months prego…. and a basketball face. I will take some of your inability to eat for a bit!!! You are doing good. Thanks for updating – it’s nice to hear how you are. Hugs, Lori

  3. We had a great time at the party and wish we could see everyone more often. When Linda and I retire I would like to increase our visits.
    Love, Harold

  4. Rolling Stones-Get Off of My Cloud 🙂

    Glad to hear the party was a success and great weather. It would have been fun to be there, but as I posted earlier, duty called for being a mother. I was able to help Kari (and Steve)in delivery with Desmond. It was a great experience. My first time as a helper and not laborer. And the best part is that I did not faint. (Well maybe not the best.)

    I too am looking forward to you being one of the participants for the study. You will be GREAT!!! Hang in there. It has almost been a year already. You are a super woman!

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