Day +868: Got no deeds to do, no promises to keep…

“I’m dappled and drowsy and ready to sleep
Let the morningtime drop all its petals on me…
Life, I love you, all is groovy.”


4/16/2013: Typical Maryland spring, i.e., no telling what weather to expect one day to the next. Not long after our surprise snow, we had days of temperatures climbing to 90 degrees F, but this past week has been beautifully spring-like in the 60s and 70s. Not seeing many April showers though.

I’m feeling great. My cold finally went away after about three weeks and the lingering fatigue another week later. I’ve had a bunch of medical appointments since I last posted – here’s an update.

Dermatology 3/27/13

The occlusive opsite bandage has helped a lot with both pain and healing on my biopsy site. Dr. E said the spot was actually coming along nicely, to which I replied, “After 10 weeks it should be completely gone!” I had to laugh when she responded, “Ah, but you’re a special case – GvHD is a scarring process in itself,” first, because she has no idea how many times I’ve been a “special case” in the past few years and second, because she finally acknowledged that I probably do have cutaneous GvHD.

We both agreed that a punch biopsy would serve no useful purpose at this time. The diagnosis of either lichen sclerosus or gvhd call for the same treatment plan – topical steroids and tacrolimus. The diagnosis for GvHD is rarely unequivocal, even with a biopsy. Based on the location and timing, Michael and I find it highly likely in this case. Remember, this is not necessarily bad – the desired graft versus leukemia effect goes hand in hand with graft versus host.

I’m to continue using tacrolimus daily, even on the biopsy spot, plus alternating the Clobetasol steroid two weeks on/two weeks off. She replaced neosporin with Atrapro gel on the biopsy and said to change the bandage twice daily until it healed. She recommended using DHS lotion for general dryness but my pharmacy said it has been discontinued; I’ve been using Hydrocerin instead.

Dr. E also checked my face and said it looks good. The seborrheic dermatitis comes and goes. Laughably, she started to examine my scalp, not realizing I had on a wig. When she touched the hair and realized it was synthetic, she exclaimed, “That’s a great hairpiece!”

My biopsy site finally healed enough to quit using bandages two weeks later. My next dermatology appointment is May 29.

My seborrheic dermatitis has flared up again on my face the past couple of days. I alternate ketoconazole and Promiseb creams for treatment.

Hematology 4/3/13

When I saw Dr. B on April 3, I was nearly over the respiratory infection. My lungs sounded clear again. Dr. B examined my neck and said he couldn’t feel any lymph nodes. I laughed and replied, “That’s because they’re gone!” Of course they aren’t all gone. I like it that he gets my sense of humor, unlike some of my other doctors. He tested my immunoglobulin levels in addition to the usual blood work. Low levels could account for the frequent infections. If levels were extremely low and infections serious, IVIG treatments could be done. As it turned out, my levels are only slightly low, not enough to warrant IVIG and associated side effects, and not something to worry about. In general, my blood counts are very good:

WBC 9.9 (ref 3.0-11.2)
Granulocytes (~ANC): 5.3 (ref 1.4-9.0)
Platelets: 454 (ref 130-382)
RBC: 4.59 (ref 3.90-4.90)
HGB (hemoglobin): 14.0 (ref 11.5-14.3)
HCT (hematocrit): 44.3 (ref 34.2-42.2)
Bilirubin: 0.4 (ref 0.0-1.2)
Alkaline phosphatase, S: 97 (ref 25-150)
AST: 19 (ref 0-40)
ALT: 17 (ref 0-40)
Potassium, serum: 4.5 (ref 3.5-5.2)
LDH: 134 (ref 0-214)
Immunoglobulin G, Qn, Serum 1286 mg/dL (ref 700.-1600.)
Immunoglobulin A, Qn, Serum 84 mg/dL (ref 91-414)
Immunoglobulin M, Qn, Serum 39 mg/dL (ref 40-230)
Immunoglobulin E, Qn, Serum 63 mg/dL (ref 0-100)

All in all, Dr. B says I’m looking good and doing well. My next routine followup is August 7.

Mammography 4/8/13

Mammograms are never pleasant but the technicians are usually exceptionally nice and manage to distract with idle conversation. Not this time! The tech was very mechanical and abrupt. A small adjustment in positioning can also make a big difference in discomfort. Some of the techs just seem to have a knack for minimizing trauma. Unfortunately, this one did not. Pinch! Flinch! Silent ouch! However, it was over very quickly and the results came back fine: “There are scattered fibroglandular densities. No suspicious masses, calcifications or other abnormalities are seen. There is no mammographic evidence of malignancy.” I return in a year.

Otolaryngology 4/16/2013

The automated check-in kiosks were down, and the old inner waiting room was closed so the outer area was very crowded. My appointment was for 11:15, and I finally saw my surgeon at 12:25. The nurse had numbed my right nostril in preparation for the scope. Too bad I forgot that I have a spur on that side and should’ve told her to numb the other side. I had to wait another 15 minutes for Dr. G to return after she numbed the left. Fortunately, I had no place else I needed to be and I had my iPad for entertainment and a comfortable seat while I waited.

The oral exam and through-the-nose scope exams went well – no evidence of any problem. My nose was a little red inside, probably a leftover from my last cold. I told her I’ve been getting slight earaches in my left ear lately but it could be from the congestion. She said if it persists to call her, and she’ll schedule another MRI.

I also mentioned that my neck under my chin is still numb and feels very bulky. She said I should consult a plastic surgeon and gave me the card of one of her colleagues.

I ran into my speech pathologist in the hallway, and she said I look and sound great. I told her I’m still doing my tongue stretches. My voice becomes slurred if I’m too tired or too dry.

I’ll return for my next routine otolaryngology checkup in three months, July 16.

Tag Lines

I’m going to give you more time since I got no responses on the last one! A hint for the current one – it’s our Oreo cat’s (Dory Alexander) theme song on our website :-).


  1. In reverse order, The 59th Street Bridge Song, Simon and Garfunkel
    and (a guess) White Christmas by many.

    I am delighted to here you are doing so well. I am sure you are quite happy for things to have settled down to a dull roar.

  2. I love the reaction to your hairpiece–I was looking for a “Like” button. I’m glad to hear all of the good news.

  3. I’m curious which hairpiece you were wearing.
    Glad you are doing so well. I recently had a mammogram done too I guess I was more fortunate than you. My tech was very nice and kind. And I got a good result. So I too am good for another year. Your test results do look great. Glad most things are improving. Continue what you are doing. You are awesome!

  4. Great to hear the good results. Keep up the good work. Enjoy the spring weather. Love to you and Michael!

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