Day +1000: It’s me again, Margaret…

8/26/2013: Good morning! It’s another unseasonably cool summer day, just the way I like it. August weather has been surprisingly nice this year, particularly after July’s heat wave. Picking up where I left off last night…

Physiotherapy

I forgot to mention how impressed the lymphedema therapists were with my neck scars. In their line of work, they see a wide variety of scars on patients who’ve had different combinations of surgery, chemotherapy, and radiation. They judged my scars as “beautiful” even compared to others who’ve had surgery only. I told Kathy about the ScarAway silicon strips I used after surgery on the recommendation of my local physiotherapist. Kathy passed the info along to another of her patients who started using them immediately and saw some improvement within a week. My scars have been feeling tighter lately, so I decided to abandon the gel my dermatologist recommended and go back to using the strips for a couple of months. The gel was expensive and sticky and didn’t seem to work as well.

Heather and Kathy both commented that it would be better if they saw patients sooner post surgery, and I expressed my frustration that I hadn’t been referred to a lymphedema specialist until many months later. Right after my neck dissection, I was given a generic prescription that simply noted the surgeries I’d had. Choice of therapy was left to the physiotherapists, and choice of therapists was left to me. I knew about lymphedema therapy only because of my contacts with other patients online via forums and my research. It is not standard procedure after neck dissections, particularly if radiation has not been administered. Heather said she’d contact the Hopkins otolaryngology department and strongly recommend more explicit referrals for all neck dissection patients soon after surgery.

Dental

My 6-month check-up and cleaning on July 19th went well and wasn’t as painful as last time. Because I’d had a recent head and neck MRI, they opted to delay the currently due panoramic x-rays until next time. No new cavities showed up in my oral exam. A small filling on my lower front tooth keeps falling out. They decided to just keep an eye on it instead of replacing again. It isn’t readily visible. The hygienist and dentist both noted that I had stubborn stains that wouldn’t come completely clean. I suspect this is a sign that my enamel is eroding from my dry mouth. I return for my next check-up January 23rd.

Ophthalmology/Optometry

I have my medical eye exams and treatments at Wilmer but I prefer a small local shop for my glasses. I got three new pairs last month – progressives, computer glasses, and polarized prescription sunglasses. My optician, Devin, was an affable young man, very conscientious about the proper fit. He was concerned that my glasses not be too tight but snug enough for physical activity. I told him I thought they’d be okay unless they flew off if I got too wild on one of my video games. He said wryly, “What do you play – Candy Crush Saga?” I chided him for his stereotypical view and told him I’d been playing computer and video games since long before he was born. This generated a lively discussion on various types of gaming. By the time I left, he gave me his business card with his PS3 gamer tag hand written on the back.

I’m happy with my new glasses. I don’t see a lot of difference in my Silhouette progressives – the prescription change was small – but my computer glasses and sunglasses were older and the change more dramatic.

The Restasis has seemed even more irritating to my eyes lately so I returned to Dr. Prescott at the local Wilmer clinic on August 21st. My left punctal plug had fallen out. When she replaced it, she couldn’t get it to seat as deeply, and theorized that scar tissue might be forming in the duct. This isn’t necessarily a bad thing as it might serve as a natural plug. She said if the plug fell out again, she’d do a drainage test.

A fellow transplantee from another facility had her ducts cauterised. The idea was totally creepy to me initially but then again, so was the concept of plugs, and they’ve helped tremendously. I inquired about the procedure and asked what the potential long-term downside might be. Dr. Prescott said the disadvantage is that it’s irreversible; if a patient ended up having too many tears, nothing could be done. We both agreed that probably wasn’t a big danger in my case. So I’m thinking about having this done. Thanks for the idea, Lori – the ability to share this kind of info with other patients via the internet is invaluable! We live in a wonderful age.

Thanks to Kathy, another fellow transplantee, I also asked about steroid drops to help with the Restasis irritation. The doctor prescribed a tapering course of Lotemax drops, 3x daily for a week, 2x daily for a week, 1x daily for a week. Lotemax is a mild steroid, only about 1/8 as strong as Prednisone. She also prescribed Lotemax ointment to use at night until my next visit. I return for a follow-up October 16th.

Hematology

I saw my favorite hematologist on August 7th. We exchanged book and movie ideas. His cousin’s film, At Any Price, had only a limited run in theatres, so I preordered it on DVD. I’d just finished the audio book, Stiff by Mary Roach, and recommended it to him. A history of human cadaver research, it’s not for everyone, but Dr. B and I have similar tastes in reading.

My blood work looks quite good:

WBC 11.6 (ref 3.0-11.2)
Granulocytes (~ANC): 4.5 (ref 1.4-9.0)
Platelets: 412 (ref 130-382)
RBC: 4.56 (ref 3.90-4.90)
HGB (hemoglobin): 14.7 (ref 11.5-14.3)
HCT (hematocrit): 44.1 (ref 34.2-42.2)
Bilirubin: 0.6 (ref 0.0-1.2)
Alkaline phosphatase, S: 85 (ref 25-150)
AST: 21 (ref 0-40)
ALT: 13 (ref 0-40)
Potassium, serum: 5.5 (ref 3.5-5.2)
LDH: 141 (ref 0-214)

Dr. Bahrani noted that the patch on my back looks worse and said he’d be very interested in the results from my then upcoming first consultation with Dr. Gaspari. (More on that next.)

Because my annual post transplant exam at Johns Hopkins is in December, I’m not scheduled with local hematology again until February 5th. I’m being weaned.

At checkout, the receptionist complimented my hair and asked if I was going to keep it white. She was amazed when I pulled it off, and she realized it was a wig. She wants to get one for herself to wear on days she doesn’t feel like doing her hair.

Dermatology

Michael accompanied me to my initial consultation with Dr. Gaspari at University of Maryland August 15th. First, the resident, Dr. Halvorson, examined me and took a medical history while medical student, Terrence, observed. They both returned a short while later with Dr. Gaspari who examined me thoroughly all over and asked many questions. I was surprised at how hazy my memory had become on some of my history post transplant. I wasn’t very well prepared because I expected him to just look at the spot on my back. Michael was able to look up some of the info on our blog with his iPad during the exam. I emailed more detailed information later.

Based on the pebbling of the skin on my abdomen that I thought was cellulite and the many discolorations on my skin that I thought were leftovers from conditioning chemo, Dr. G suspects sclerotic GvHD. He said he wanted punch biopsies from my abdomen and a different area on my back and then wanted me to return for my case to be presented at Grand Rounds for evaluation by a larger audience. He also wanted to invite Dr. Cowen, my dermatologist at the NIH GvHD study nearly two years ago. Dr. Cowen is a former student of Dr. Gaspari.

Dr. G briefly described several possible treatments if his suspicions are correct:

  • PUVA: http://en.wikipedia.org/wiki/PUVA_therapy
  • UVB:http://www.ncbi.nlm.nih.gov/pubmed/21616558
  • Extracorporeal photopheresis (ECP): http://www.marrowmatters.com/Photopheresis.html
  • Dr. G ordered blood work to rule out Lupus and Sjögren’s syndrome. PUVA is contraindicated for Lupus.

    While Dr. Halvorson took photos and did my biopsies after Dr. G left, I asked about Grand Rounds. I wasn’t familiar with the term. He replied that cases are chosen because they’re interesting or unusual or both. Michael showed off my post surgery Bride of Frankenstein photos from last fall, and Terrence added, “Another condition is that the patient have a great personality!”

    Later, seeking more info about Grand Rounds on the internet, I found the following excerpt from an article Dr. Halvorson wrote his first year of residency:

    “The most interesting cases are presented weekly at our Grand Rounds conference where patients come from across Maryland, the United States, and occasionally the world for a comprehensive evaluation of their unique conditions. Each case is presented to the group by a first-year resident along with a differential diagnosis that is constructed with the help of our senior residents. A lively discussion follows, which involves our medical dermatologists, dermatopathologists, Mohs surgeons, and community physicians as we try to accurately diagnose and treat these complex cases.”

    Despite my high hopes of being medically boring this time, it seems that my case is once again interesting. I’d rather be a simple case or better yet, no case. Since I’m not, however, I’m pleased to have the opportunity to take part in education and to be seen by a variety of doctors. Tomorrow’s my big day. I’m both curious and hopeful. Michael overheard me talking to my niece about the difficulties of diagnosing T-cell disorders. She said, “I know – look at all those cases on House.” Michael muttered, “If Hugh Laurie shows up, we’re leaving!”

    Dr. Halvorson called with my biopsy results last Thursday. They are indeed suggestive of GvHD. He confirmed that I’ll be attending Grand Rounds on August 27th. My blood work was normal.

    Miscellany

    You’ve probably noticed that Michael and I include more details in our blog than would be generally interesting to the average reader. We do this for ourselves. This is our own journal as well as the public blog. We like going back and realizing how far we’ve come on this journey. As we learned with Dr. Gaspari, the blog is also a valuable resource for documenting my medical history along the way. Based solely on the information here, I was able to construct a fairly concise and accurate timeline that will help with my diagnosis.

    Happy Birthday, Michael!We have a busy week ahead. In addition to Grand Rounds, my cousins are visiting from Missouri, and we’re hosting our annual August/September family birthday bash this Saturday. My cousins from DC will be up for the party. We’re expecting a new niece sometime in the next couple of weeks so we’ll have one more family birthday to celebrate next year. We already have 10. Michael’s was last Friday, August 23rd. Doesn’t he look great?

    5 Comments:

    1. Congratulations on 1000 days, a huge accomplishment! The road has been long and difficult, but you continue to weather the storms! You’re amazing! Keep it up!

    2. Steve – Karen and I think you’re an amazing person!

    3. It’s me again Mausi – 1000 miles, 1000 smiles, 1000 tears and we’re still here. 97 years is such a short time! Love Misch.

    4. 1000 days, that is amazing! And you sound busy busy busy. But all in all sounds like you’re still doing very well, I’m so happy to hear it! And I know you’re an absolute inspiration to those who find themselves following behind in your footsteps.

      You always seems so lucky in getting the best people to take care of you. Your positive attitude is the 2nd half of that battle.

      We’re going to Estes Park this coming weekend for the annual craft fair, will be the first time I’m making it there.

      It’s monsoon season here, right now, whatever you could consider a monsoon in the high desert! It rains nearly every afternoon. Gets nice and cool over night, then shoots up in the 90s until the rains come again.

      Say hi to all the family for me this weekend, I wish I could be there!

      Love

      Chris

      PS happy belated Bday Michael

    5. Karen, I don’t know how I missed all of this!!! The eyes are a pain….! You are a tough one – I am impressed with your stamina.

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