Day +261: Doctor, my eyes…

“Tell me what is wrong
Was I unwise to leave them open for so long…”

This morning, I had an ophthalmology appointment at the Wilmer Eye Clinic at Johns Hopkins. I’m past due for a prescription change and figured Wilmer would be a good place to get a thorough eye exam and get evaluated for possible cGVHD because of my continuing dry eyes. Coincidentally, my ophthalmologist turned out to be the wife of a transplant doctor I’d consulted with at University of Maryland last year – a small world, indeed. In addition to the doctor, a technician, a resident, and several medical students examined my eyes, complete with a Schirmer test and multi-colored drops and dyes. The bright green dye they used to look for viruses produced a particularly interesting “make-up” effect, albeit a bit ghoulish. The doc even plucked a couple of my eye lashes and looked at them under the microscope. We didn’t realize how complete the exam was until we listened to the ophthalmologist recording her clinical notes via a system where she telephoned and left a recording for the transcribers. She spoke volumes, quickly and efficiently; Michael and I simply sat there, staring (and listening) in awe while she spoke. She may not have had the greatest chairside manner but she was obviously an excellent clinician. The bottom line was a good report overall: I do have a small amount of apparently non-progressive fibrosis in one eye as well as moderate dry eye (for which she prescribed Restasis) but no evident ocular GVHD. My vision prescription changed only slightly. She wants me to return for a follow-up in six months.

While we were in the building, we stopped up at my old ward, 5B, to visit the nurses and techs. I got to see Karen, the nurse who gave me my transplant and my pixie haircut. She said she remembered giving me the haircut but had forgotten about doing the transplant – priorities, lol.

We also fortuitously ran into the nurse practitioner from my transplant team. At first she passed by with a polite hello but stopped and did a double-take, obviously recognizing Michael first. She then eyed me up and down and said, “Why are you here? It looks like you’ve lost more weight and your skin looks worse than last time I saw you.” We were originally scheduled for an appointment on September 1 but she asked if she could see me today instead. That worked out well and saved us the extra trip downtown in a couple of weeks. We discussed my eating difficulties as well as my dry mouth and eyes and my hyperpigmention on neck and back. She concluded again that it does look like GVHD but not severe enough to treat, not wanting to lose the graft vs. leukemia effect. She believes the dryness and discoloration will improve with time. I showed her my bloodwork results from earlier in the week, and she was very pleased. As we were leaving, she commented how cute my hair looked (the short wig), and I suddenly realized the style is almost identical to hers, although she’s a brunette. Anyway, I must admit that Johns Hopkins isn’t as cold and impersonal as I indicated in a prior post.

We finished the morning appointments in time for lunch, a stop on the way home at my favorite Indian restaurant, after which we headed home for a couple of hours before going back out for my Vidaza appointment. The nurses were still looking tired and harried but not as stressed as earlier in the week.

Finally, we are home again, and I realize the early morning and all day running around and chemo treatment have left me TIRED (usually Michael’s mantra). I think it will be an early to bed night for me despite the normal night owl tendencies.

Day +259 tagline:
Big Yellow Taxi, Joni Mitchell – also covered separately by Amy Grant and Counting Crows, although the original is still best, (IDed by Cathy, Chris, Greg, and Andy)

p.s. I treated myself to some new, better fitting clothes yesterday, including jeans. Guess what? Flares are back in style. Big time deja vu as I viewed myself in the mirror. Hey, these will look great with my tie-dyed t-shirt! Bell bottom trousers, coats of Navy blue….

7 Comments:

  1. What an uplifting post right before bed!

    You seem to make the best out of every situation… I need to take a page out of your book!

    Love to you Karen, Michael and the fur babies!

    xoxo Jenny

  2. I also enjoyed the post. Great!

    It seems like time is the best thing now. Just keep doing what you are doing and things will improve. I was thinking of your eating problems and all the great restaurants you have been visiting. It seems like you are eating at a lot of ethnic restaurants. Maybe you haven’t been able to enjoy them as much as before, but at least you are able to eat at them. If you were really bad, I would think that it would only be hamburgers (don’t want to endorse any of the regular joints) that you would be able to keep down. So you must be doing okay with the wide variety of foods you have been able to eat. So I am just saying this so you can look at the bright side. Love you. 🙂

  3. I forgot about the tagline. Doctor My Eyes-Jackson Browne. Do you really know all these songs, or do you google “lyrics about eyes” or something like that?

  4. Isn’t it nice when someone you think will not remember you actually does!!! Hopefully your “issues” will lessen with time. My doc seems to think my skin gvh will eventually go away. It really does not bother me. After all I’ve been through it would take a lot for me to get too upset!

    Hugs, Lori

  5. Cathy,

    We really do know all of these songs. Usually, one of us will think of a song and then look up the full lyrics to choose which part of the song to use and to make sure we get the words right.

    The eating problem is mostly getting foods down because of my limited saliva, not keeping them down. Ethnic foods are actually easier for me to eat most of the time because of textures and flavors. American foods are often drier, more starchy, and either salty or bland. The foreign foods are more often in small pieces and use sauces that combine sweet and savory or sweet and spicy hot. Dry, starchy, salty, and sour are not good. I don’t eat much Italian food because the tomato sauces are sour to me. Pizza is especially bad. Indian and Thai are probably my current favorites. All sorts of salad greens, cantaloupe, watermelon, and many desserts are also pretty good. Most fruit tastes sour to me (plus I’ve never been a big fruit eater). Anyway, that’s probably way more than you ever wanted to know, lol. 

    Jenny – always great hearing from you. xoxo

    Lori – I agree, the skin gvhd doesn’t bother me at all. Hope you continue to do well.

    Thanks for all of the support and encouragement.

    Love,
    Karen

  6. I got home from OC to 96 emails. mostly jokes
    mostly not too terribly funny. Why are you back on chemo? Chrissy told me you were in
    Mon and didnt make it through your pate! She
    told me this Friday afternoon. Hope all is going well. Tried to catch up on your blog but
    trying to catch up on all the cubscout and boyscout stuff we missed and that is coming up
    at a rapid pace. School and 6 am start the 29th. goodbye 8:00. miss you guys…Ill Pray
    dana

  7. Sorry to hear the issues you continue to have. But glad it is not too serious. Have you tried Salagen? I just got a script for that this past week. It works really good. It’s for dry mouth. Eating is the pits for me right now too…GVHD in mouth…burns, dry, nothing tastes good, hurts, etc. Oh well, such is life, can’t complain.

    Hope you have a good week!

    Laura

Leave a Reply

Your email address will not be published. Required fields are marked *