Day +628: On a hot summer night, would you offer your throat…

“…to the wolf with the red roses?”

8/19/12: How can it be mid-August already?! The summer is flying by quickly, as I knew it would. This has been the hottest summer I’ve seen in a very long time but I’m not outside much so it doesn’t affect me dramatically. It is actually very cool today, in the 70s F.

It’s been more than 20 months since my bone marrow transplant. I had a regular checkup with my hematologist, Dr. Bahrani, on July 16. He says my color looks excellent and he’s thrilled that I’m able to enjoy eating. I don’t see him again until October. My blood work continues to look good:

July 16, 2012
WBC: 7.6 (norm 3.0-11.2)
Granulocytes (~ANC): 3.4 (norm 1.4-9.0)
Platelets: 362 (norm 130-382)
RBC: 4.40 (norm 3.90-4.90)
HGB (hemoglobin): 14.4 (norm 11.5-14.3)
HCT (hematocrit): 44.1 (norm 34.2-42.2)
Bilirubin: 0.6 (norm 0.0-1.2)
Alkaline phosphatase, S: 148 (norm 25-150)
AST: 39 (normal 0-40)
ALT: 35 (normal 0-40)

Not long after I recovered from my spring respiratory infection, my left ear started aching slightly, not like an ear infection but more like there might be an ulcer where my ear canal and throat meet. Dr. Bahrani could see nothing about 10 days later when I went for my checkup. He said to see my ENT if the problem didn’t clear up within a week. I saw my ENT on July 24. My ears looked clear so he ran a small scope through my nose (ugh) to get a better look at my throat. He observed a small red raised spot on the base of my tongue. A CT scan on the 27th showed nothing remarkable and a follow-up exam on August 3rd showed no change. I conferred with my transplant doctor via email. He doesn’t seem worried and thinks it’s probably not related to my MDS or transplant.  

My ENT says the spot doesn’t look malignant but he still thinks it would be best to remove and biopsy just to be safe. Because of the location, this will require general anaesthesia. Therefore, I’ve scheduled the procedure at the local outpatient surgery center on August 28th. I had my pre-surgery physical last Monday ( EKG, blood pressure, blood work) and everything looks fine:

August 13, 2012
WBC: 8.4 (norm 4.0-10.5)
ANC: 3.9  (norm 1.8-7.8)
Platelets: 470 (norm 140-415)
RBC: 4.71 (norm 3.77-5.28)
HGB (hemoglobin): 15.4 (norm 11.1-15.9)
HCT (hematocrit): 45.2 (norm 34.0-46.6)
Bilirubin: 0.7 (norm 0.0-1.2)
Alkaline phosphatase, S: 131 (norm 25-150)
AST: 30 (normal 0-40)
ALT: 24 (normal 0-40)

For some reason, I feel a lot of apprehension about having the surgery, minor as it is. There’s the natural fear that the biopsy will show cancer but beyond that, I guess I’m worried about “stirring something up” at this stage. The tongue and throat are very critical areas for quality of life – talking and eating are important! What if I don’t heal properly or it takes a long time to heal? What if it gets infected? What if the spot is GvHD and the biopsy inflames it further? I’m still ultimately optimistic about the outcome but can’t help feeling nervous at the same time. I never used to be such a worrier.

I saw my ophthalmologist, Dr. Akpek, at Wilmer on August 9th. My vision is frustratingly blurry from the dryness but I still test at nearly 20/20 with my glasses and much blinking and squinting. I’d rather see more crisply than pass a test. At least there’s apparently no further damage from the GvHD/dry eye. The resident, Dr. Koo, suggested small plugs in my tear ducts to help with the dryness. I resisted initially but she assured me they are very simple to insert with a good chance of helping so I agreed. After a couple of numbing drops, the insertion was as easy as promised. If she hadn’t told me what she was doing, I’d never have guessed she’d put them in. I can’t feel them at all, and they’re essentially invisible. The best part is that the plugs do help! Although my eyes still feel dry, my vision sharpened mere hours after insertion. The plugs work by keeping the little moisture I have from draining out of my eyes. I’m supposed to continue using Restasis and return for a check-up in six months. I don’t like the Restasis drops. They make my eyes sting and hypersensitive to light. The only time I’m able to use them is right before I go to sleep for the night. My ophthalmologist would like me to use them more frequently but their use is mutually exclusive to my being functional!

The spot of skin GvHD in the middle of my back has grown larger although still isn’t too bad. My joints have been achy all over but especially in my hands, possibly a bit of GvHD there as well. I keep reminding myself that a little GvHD is a good thing to keep the leukemia away.

I continue to need intermittent Acyclovir to keep the herpes in check and Previcid for acid reflux. I’m thrilled to have avoided immunosuppressants and steroids thus far (knock wood, as Dr. Bahrani would say).

I’m still having problems with the seborrheic dermatitis on my face, head, and ears. The doctors say it is unrelated to my transplant but I tend to disagree based on the following info from Wiki: 

“Genetic, environmental, hormonal, and immune-system factors have been shown to be involved in the manifestation of seborrhoeic dermatitis. Seborrhoeic dermatitis may be aggravated by illness, psychological stress, fatigue, sleep deprivation, change of season and reduced general health. Those with immunodeficiency are particularly prone to it.”

Whatever the cause, the itchy red bumps grow tiresome. Although it’s wonderful that I’m feeling great, I want to look in the mirror and see a healthy looking person, too, not someone with irritated red eyes and blotchy skin. Yes, I am greedy!

Speaking of appearance, I got a couple of new wigs (buy one, get one free :-)), a short boy cut for summer and a long curly one for a change of pace now and then. There are photos in Gallery 2.

Guess that’s it on the health front for now. I’ll post an update after I get my biopsy results next month. Although I may sound rather grumbly, my complaints are all small, and I’m thankfully feeling very well with spirits high!

2 Comments:

  1. Karen, Great news! I’m with you on feeling better and wanting to look in the mirror and see the old us! I thought I’d let you know that my dry eyes were just as you described. The plugs did not stay in so the Dr cauterized 2 upper ducts and 2 lower ducts. I now am much better. I use the restasis, but if it burns badly I put systane drops in about 30 minutes later and that stops the burn. I am still on prednisone 10 mg and 2 other immune suppressants. This is for my skin gvhd. It started as red spots that itched and now is fading, but I have lumps (looks like cellulite) on my arms and legs. Dr says it will go a way.

    Thought I’d share what has worked for me. If I can lose 10 more pounds I will be happy! All kidding aside, I am happy and very grateful for all of my blessings. Hugs, Lori

  2. Thanks for this update, Karen. It’s great to hear how you’re doing, and to be kept connected to the scientific and emotional details. What a blogger you are!
    I will be thinking of you as you go through the surgical procedure. And I, too, after months of dry eye discomfort every day in late afternoon, had the plugs put in. I could not even feel it as I chatted with my excellent eye doc. They’re a godsend.

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