“Yes, I know it hurts at first but it gets better…”
3/8/13: I’m a procrastinator by nature, especially when it comes to writing. One of my excuses to myself for delaying blog updates goes something like this: “I have another medical appointment soon – might as well wait to see what happens with it and write about everything at once.” I had quite a few doctors’ appointments last month and thus managed to procrastinate a full six weeks between updates. (Make that seven – it’s been another week since I began writing this.) I’ll caution in advance that this is likely a long, boring post, an uncreative historical update for the record. Of course, in cancer and bone marrow transplant recovery circles, boring is good! In general, when you don’t hear from us here, no news is good news.
The day after I wrote my last blog entry, I awakened with a sore throat and sniffles, disappointingly, my second cold since Christmas. Fortunately, it ran its course in about 10 days without medical intervention, basically a snotty inconvenience.
I was supposed to follow-up and get biopsy results on Feb. 6 but my biopsy site was extremely painful and healing slowly so I moved the appointment up a week. The PA, Todd, said my diagnosis came back as lichen sclerosus, and he prescribed the topical steroid, clobetasol, to be used after the biopsy site healed. He said the site didn’t look infected and was healing, albeit slowly, and scheduled me for a follow-up in 4 weeks. As I was leaving, I remembered to ask for a copy of the report.
Imagine my dismay when I read the lab report later and discovered the lab had ruled out cancer, Graves disease, and lichen planus (eczema) but no mention of any evaluation of GvHD, my primary reason for requesting the biopsy in the first place. I left a voice mail with my dermatologist and received a call back from an assistant who said the doctor would discuss my results further at my next office visit. I told her I’d already been waiting 15 months for someone to address my concerns while I watched the small dry patch grow into a larger sore, scaly patch and I wasn’t ready to wait another month. “We can do this the hard way and I can go to another doctor and have them request my slides to send to their lab for further diagnosis, or we can take the easier route of my current doctor calling the current lab and asking them to check for GvHD.” The assistant became flustered and said she’d speak with my doctor again. Dr. E called me the next day and said the lab was sending my slides to Cornell for evaluation for GvHD. She phoned me with the results the following week, saying I don’t have GvHD and they still believe it is lichen sclerosus (LS). I had my doubts but didn’t argue this time because the treatment is the same for LS and cutaneous GvHD – topical steroids.
In the weeks that followed, my biopsy site continued to heal [literally] painfully slowly and I developed new raw spots from the paper tape on the dressing. I quit covering the spot with the bandage. The lack of protection made it even more painful despite frequent applications of Neosporin antibiotic/pain killing ointment. I saw Todd again on Feb. 27. He said the site is still healing and does not show any signs of infection but he noticed a couple of new lesions spreading from the original scaly area. I expressed my doubts about the diagnosis since GvHD diagnoses are rarely unequivocal. Also, I read the latest lab report while I was still in the office this time and it did not rule out GvHD – instead it said that a punch biopsy would be needed if further evaluation was desired. Todd wanted to do the punch biopsy but I declined for the time being – the treatment is the same regardless, and I don’t want to introduce any new wounds before the current one heals completely. Because of the location in the middle of my back, the sore spot is already negatively affecting nearly every aspect of my life. I asked about adding topical tacrolimus to the treatment since I’d read it’s sometimes beneficial in treating either LS or GvHD. Todd decided I should apply the clobetasol twice daily for two weeks and then switch to the tacrolimus (Protopic) twice daily for another two weeks, carefully avoiding the biopsy site in both cases. He also prescribed topical lidocaine for the pain and recommended taking Tylenol or other general analgesic.
After another frustratingly painful couple of days and nights, Michael and I came up with a new idea. I recalled that I’d had the same adhesive issues with the covering for my hickman catheter two years ago and finally found I was able to use an opsite dressing without too much skin irritation. Luckily, we still had a few of the 4″x4″ patches left over, the perfect size for my sore back. We tried it last night and I got immediate relief. The thin, transparent covering is almost like a second skin. The area is still tender but no longer raw as long as I keep it covered. I found the same product on Amazon (they really do have everything) and ordered a bunch more.
Hopefully, the wound will be completely healed by my next dermatology visit on March 27. I’d like to get the punch biopsy for a more definitive diagnosis on the GvHD. Todd said the punch biopsy should heal faster because it will be a sutured incision instead of an open “scoop.” I hope so!
I returned to my dentist for three fillings on February 6. Despite my extreme apprehension beforehand, the visit wasn’t bad. I even managed to let him do all the fillings without anesthetic! I return July 19 for my routine cleaning and check-up.
My follow-up with the Hopkins speech pathologist on Feb. 7 was uneventful. Heather was pleased with my progress. My speech is nearly normal, probably as good as it’s going to get, and my eating issues are minimal. She advised me to continue with the tongue exercises but does not need to see me again.
On Feb. 8, I had an MRI of my head and neck with and without contrast, followed by a consultation with my surgeon. Dr. G used the through-the-nose scope to examine the base of my tongue and did a thorough oral exam. She said she wished she’d made the neck incisions a little further back for cosmetic reasons – thought they were too visible looking at me face to face – but was very pleased with everything medically. The MRI was clean, no evidence of remaining or recurring cancer. She scheduled another follow-up for April 16.
I saw a new gynecologist at Johns Hopkins Bayview site for my routine exam and PAP smear on Feb. 12. As noted at NIH in Oct. 2011, I have strictures and scarring, presumably from GvHD but no current inflammation. My PAP came back with, “A few (rare) atypical cells seen, all other cells normal,” but the doctor was not concerned. She advised that I be sure to get another check-up and PAP in one year. My HPV test came back negative. I have a mammogram scheduled for April 8.
I saw my ophthalmologist at the Johns Hopkins Wilmer clinic on Feb. 21. I began by donating a vial of blood for a research study on serum tears.
The resident stained my eyes ghoulish green and took a closer look. The dry, damaged areas pick up the dye. He told Dr. Akpek I had some staining. She spoke as she repeated his examination, “I’m not seeing the staining…oh, here it is laterally on the right side. That’s very unusual.” I laughed and told her I’d heard those words way too many times. Medically, I’m an outlier.
My vision was better, 20/20 in my right eye and 20/30 in my left (with glasses). The punctal plugs in my lower tear ducts helped a lot but my eyes were still dry so I agreed to plugs in my upper tear ducts, as well. The insertion was more painful than the prior set and my eyes continued to feel extremely itchy and irritated, even swelling at times, for the next two weeks. I wasn’t scheduled to return until my annual check-up but returned yesterday to get the top plugs removed. Dr. Akpek said my eyes actually looked much better, and she didn’t want to take the plugs out. I replied that they probably looked less dry because I’ve been using so many drops and washes to try to ease the intense itching. She agreed to the removal if I would continue using extra eye drops. I was much relieved that the itching stopped as soon as the plugs were out. She also reinserted the lower plug in my left eye that must have fallen out when I was rubbing my eyes the past two weeks.
She reiterated that GvHD is progressive and can cause blindness, and urged me to use the Restasis as often as I can tolerate, up to four times a day. Thus far, I’ve used it only once at night because of the burning, blurring, and light sensitivity but I’m trying to build up my tolerance to an additional dose in the morning.
I’m to return for a check-up in three months. Wilmer has a clinic in Bel Air now, much closer to home. At my request, Dr. Akpek recommended someone, Dr. Prescott, I can see there for the follow-up on June 7. If I’m not satisfied, I can always return to East Baltimore.
I was discharged from physiotherapy on February 25. I wasn’t able to do many of my exercises the final couple of weeks because of the sore biopsy spot on my back but my range of motion and strength are all fairly good. I’m to continue some of my exercises, especially the neck stretches, at home. The numbness and fibrosis under my chin are probably permanent but hopefully won’t get any worse. I’m going to miss those neck massages!
I finally got the full printed reports from my Dec. 6 bone marrow biopsy. My NP had already told me that I’m 100% donor with no evidence of disease but it’s nice to have the reports for my records. The only new information I noticed was, “A small benign lymphoid aggregate is present.” Apparently it’s nothing concerning, but I’ll ask Dr. Bahrani when I see him for my routine check-up on April 1st.
Day +770: Heart Attack, Olivia Newton John (IDed by Guy)
Day +778: Everybody Hurts, REM (IDed by Chris and Leslie)
p.s. Spring’s around the corner. I am disappointed we didn’t see any of the big snows that were threatened/promised this year – typical Maryland!