Day +1196: Wheel in the sky keep on turning…

“I don’t know where I’ll be tomorrow…”

3/10/2014: Greetings! It’s been awhile since I posted, so you should assume all is well. Either Michael or I will let you know if something goes awry.

After a cold, snowy winter across the United States, I know most of you are eager for spring. Crazy person that I am, I never tire of the chilled whiteness. However, I’m sympathetic to those less fortunate who must move the stuff around for commuting.

Daylight saving time this weekend is a sure sign that spring is near. “Does anybody really know what time it is…does anybody really care about time?”  Personally, I’d like to abolish daylight saving – why must we muck with the time anyway! Time cannot be saved, only spent.

Following are updates from my medical appointments over the past couple of months – nothing terribly exciting (boring is good).


My eye doctor previously suggested warm, moist compresses but because I disliked messing with the wet cloths, I didn’t do them often. I discovered a better solution on Amazon – a microwavable moist Thermalon mask. I microwave the mask 20 seconds and apply it for 5 minutes upon awakening in the morning and again before sleeping at night.

I also use Ocusoft Pads to clean my lids and lashes after the warm mask. I like the no-rinse moisturizing pads but if you find these too costly, diluted baby shampoo will suffice.

The mask and cleansing pads are soothing but my eyes are still quite dry and ultrasensitive to light, and my vision blurry. I saw Dr. Prescott on February 7th. She advised me to continue using Lotemax steroid ointment at night and prescribed medroxyprogesterone 1% (hormone) drops 4x daily. These drops are compounded at the Johns Hopkins pharmacy that mixed up my prior prescription. I checked this one very carefully when I picked it up on February 12th. The drops are completely non-irritating but don’t seem to be doing much. This week, I’m to let her know via the patient portal how I’m doing. She’ll let me know when she wants to examine me again.

The ECP (photopheresis) therapy doesn’t seem to be helping yet either. It may be too soon to tell on that. I’m fairly frustrated with not being able to see clearly much of the time. I can see well enough to function but it’s a constant strain. I’m about ready to try Restasis again, but only at night this time.


I saw my favorite hematologist, Dr. Bahrani, on February 5th. His office moved to the newly built cancer center at our local hospital, Upper Chesapeake (owned by University of Maryland). Despite being busier than ever and looking a bit stressed, he never makes me feel rushed. This time was no exception. Michael accompanied me this visit. Dr. B discussed the results of my January 30th high-resolution CT scan while we viewed them on his computer screen together. He took the time to explain how he determined everything looked great.

Michael and I discussed our concerns about my last bone marrow biopsy, compared to the prior two, and the fact my white count has been slightly elevated the past six months. Dr. B immediately examined my blood sample under the microscope. He saw no abnormal cells but did see signs of inflammation of unknown origin. He said it might be due to my cutaneous graft versus host disease (GVHD) but to be cautious sent an additional sample to the lab for flow cytometry analysis to rule out blood malignancies. I received the results about a week later, thankfully all clear!

“In the sample analyzed, there is no evidence of B or T-cell proliferative disorders or increased blasts.

“Viability 7AAD: 99%
There is a mixed population of myeloid cells, B cells and T cells. No abnormal myeloid antigen expression is seen. There is no increase in CD34+ blasts (<0.1% of total). The B-cells (16% of total) appear polytypic and the T-cells (15% of total) show no pan T-cell antigen deletion. The CD4:CD8 ratio is within normal limits (1:1).”

We still don’t have an explanation for the increased cellularity of my marrow, and I will ask my transplant doctor about it again when I see him on March 27th. We may never know but that’s okay as long as it’s doing me no harm.

My blood work continues to look good overall:

February 5
WBC 11.4 (ref 3.0-11.2)
Granulocytes (~ANC): 4.7 (ref 1.4-9.0)
Platelets: 476 (ref 130-382)
RBC: 4.23 (ref 3.90-4.90)
HGB (hemoglobin): 14.0 (ref 11.5-14.3)
HCT (hematocrit): 41.5 (ref 34.2-42.2)
Bilirubin: 0.5 (ref 0.0-1.2)
Alkaline phosphatase, S: 79 (ref 25-150)
AST: 22 (ref 0-40)
ALT: 13 (ref 0-40)
Potassium, serum: 4.2 (ref 3.5-5.1)

I get weekly CBCs and CMPs with my photopheresis treatments at Hopkins. As always, my metabolics (CMPs) are perfect, and my CBCs are consistently good. A couple of weeks ago, I had a scare when all my counts dropped dramatically in a single week but it turned out to be a lab error. When I was retested the next day, everything was fine.

Dr. B listened to my heart and lungs and examined the swollen nodes on the back of my neck. He said the enlarged nodes are due to skin or scalp inflammation, both of which I have.

He renewed my prescriptions for Prevacid, Acyclovir, and Ativan. I still take 0.5 mg. Ativan occasionally for nausea. It works well but makes me sleepy, not a bad side effect if I take it at night. I continue to take Prevacid for acid reflux and Acyclovir as a prophylactic antiviral daily. Every time I stop, I get a herpes flare-up so I’m trying a reduced dosage, 400 mg. instead of 800 mg. He also wrote me a prescription for a Dexascan (bone density) which I scheduled for March 18th.

My next checkup with Dr. Bahrani will be on June 4th.


My regular 3-month checkup with Dr. Gourin was on February 18th. She did the usual through-the-nose scope to look at the base of my tongue and poked and prodded my oral tongue and mouth – everything looked good. She said there’s no need for MRI or X-rays. I told her about my woes with attempted scheduling of Johns Hopkins oral surgeons. She offered to recommend someone outside of Hopkins but I told her I’m happy with the surgeon I found through my insurance. She looked at my exostoses and said there’s no indication of malignancy, and a biopsy is not needed. The bony ridge gets sore periodically so I eventually may have Dr. Yalamanchili (oral surgeon) smooth it out for me.

I get intermittent mild earaches in my left ear. Because the MRI I had last spring showed no abnormality, and the earache is not continual, Dr. Gourin believes it is a eustachian canal defect. I’m scheduled to see an otologist the same day as my next followup appointment on May 20th. Sudafed helps but keeps me awake so I don’t like to take it. Insomnia is worse than a little ear pain!

My neck scars feel tight. I think I need to do my stretching exercises more often.


My twice weekly photopheresis treatments continue. So far, there’s no improvement in either my skin or eyes. My skin is worse than before. My back itches, and the areas up near my shoulders are spreading. I keep reminding myself I’m only in my third month of treatment and was warned it might take six months to be effective. I haven’t given up yet. I’m having some trouble with my primary insurance. Hopkins called them before I started the treatments and they said it was covered under my plan. Now, the insurance company is rejecting part of the claims, saying the treatment is “unproven.” The treatments are extremely expensive and the therapy is NOT experimental or unproven, so I will persist in fighting this one. If my primary rejects the claim, the secondary will follow suit.


I saved the worst for last – today’s (March 10th) dental appointment. I have 5 cavities along my gumline that need to be filled. My transplant nurse practitioner warned me that this might happen because of my dry mouth. The dentist is prescribing fluoride gel to use twice daily to try to prevent further decay. I admit I’ve been negligent about using the recommended fluoride rinse, and now I’m paying the price. I already use Biotene mouth rinse. My teeth are also increasingly discolored. I don’t know if that’s caused by the eroding enamel or if anything can be done about it. I don’t want to risk damaging my enamel further.


There was a second song buried in the Day +1148 post (last paragraph under Hematology) that no one identified. I’ll give you some more time.

That’s all for now. Don’t be alarmed if we don’t post for a few months! No news is good news.


  1. Karen,
    It sounds like you are holding your own!! Hopefully once the weather changes we may feel even better! Ive been reading (when I can see) articles about chronic dry eye. My husband brought a vaporizer home last niht foeh bedroom. No change yet. 🙁

    Hang in there and know you are not alone. Misery loves company, you know.


  2. Karen,
    And the beat goes on —- Eye doctor says it’s been a very severe winter for people with dry eyes. Lots of cold days with very low humidity. I started Restasis and it’s helping. I expected it to burn, but it doesn’t in my case. Hopefully milder weather will help.

    Sending you positive vibes. BMT survivorship is not for wimps. There always seems to be a little gremlin ready to jump out of hiding and bite us when we get too comfortable. Hang in there my friend.

  3. Thanks, Kathy and Lori. You’ve both endured far more than I and are role models for staying positive and persevering! Best wishes to you both. ~Karen

  4. I’m glad I’m not the only one that has problems with Sudafed keeping me awake. My congestion usually gets worse as the day progresses, so by the time I think I might need something it’s bed time. I’ve found that massaging the ear helps some. And pulling down and back on my ear lobe.

    • Thanks for the ideas, Leslie. Sudafed keeps me awake even if I take it only once a day in the morning. Also you get credit for the tagline reply on FB.

  5. Glad you are hanging in there. Wish they could find a “cure” for all things. But until then the search goes on.

    I agree with you about changing the time. Just pick one and leave it alone! Spring is just around the corner. Looking forward to that. I love to see the flowers coming up and then of course blooming! We want lots of flowers this year. We have an order out for some honey bees and a hive. 🙂

    Love you!
    Cathy 🙂

  6. Chicago-Does Anybody Really Know What Time it is?


  7. Wow, you are such a trooper. I really hope things remain as boring as possible.

    Good luck with the insurance battle. Hopefully if you are successful in your claim other people will benefit from the treatment too.

    Xoxo jenny

  8. George Michael – Faith.
    Way to go, Karen and Michael.

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