May 24, 2021 · from Lesley’s original CaringBridge journal
Well, Pirate Week has been full of excitement! There are some details which I will not divulge – it will give us all plausible deniability, but you can do the math and you will probably be right in your assumptions. My eye continually got worse this past week. I used every kind of drop I could get my hands on – there is no telling what I spent on new ones either, I don’t want to know. I could not go more than 10 minutes without having to use something – it was excruciating! Wednesday I had to drive to Atlanta and back (2 hours each way) for Gus’s post-op appointment and my pre-op appointment. That was…..interesting…… Both appointments were uneventful, he is healing great and all is set for “Reconstruction Take 2” on June 1. Thursday I had an eye appointment – ironically this has been scheduled for months and was not about my scratchy left eye, but that is what it turned into being about. He said that I have multiple dry patches under that eyelid and that it is probably GVHD (which really stinks because I really don’t want another thing to manage). He told me to switch to a different kind of eye drop and referred me to the cornea specialist, who also is the ocular GVHD specialist. I will see her this Friday. In the meantime he gave me a list of different than I was using eye drops to try and told me to wear a patch. So I have, and going around with one eye taped shut is quite entertaining for everyone else in the house. The kids have tried to see what they can do in what would be my peripheral vision on the left side without me noticing. I have gone some longer periods without a patch yesterday and today, but I am back to being Jack(ie) Sparrow tonight. I am really praying that this clears up and it was all a misunderstanding with GVHD thinking it was supposed to inhabit my eye as well.
I saw The Boss on Thursday after the eye doctor. He is still all go for launch for my surgery, so that is great. My bloodwork continues to be good so we keep trucking along. ANNNNNND……. in one more day I will hit the ONE YEAR mark!!!! It is hard to believe I am already there! The most exciting thing to me about hitting this milestone is that it means….. I CAN CONTACT MY DONOR!!!! Of course, she has to consent to get connected, which I really hope she does, but we can get the process started after Wednesday!
So as I sit here and type one-eyed, I am again thankful. I am thankful it’s just the one eye and I can keep doing my normal things, be it ever so clumsily! I am thankful for the past 364 days that I didn’t think I would have. I am thankful that I have been able to celebrate ALL my kids birthdays at home this year! Murphy turned 16 and Gus turned 4 last Sunday the 16th and Jack and Eli will be 14 tomorrow. I made Gus his “Sprinkle Cake” and I am in a 3 day process of making J&E a monstrosity of a crazy concoction they came up with – it is Dairy Queen cake meets cookie cake. Stay tuned on social media for photos – after all of this I will feel the need to brag on or make fun of myself either one. Also, one of my best good friends had twins last week and I couldn’t be more excited!!! More May birthdays to celebrate!!!
I wish all of you could be with me Wednesday for my “First Birthday” (as it is called in the BMT world)! I wish we could have a big ol picnic (indoors though because it is stupid hot this week) and I could hug each and everyone’s neck. You all have stepped back up and prayed me through yet another crazy cancer year. Please keep it up though – I will just be selfish and ask for more of your mental time. Unfortunately for me, there is still a long road ahead. I don’t want to say “I’m not out of the woods yet” because that just sounds doom and gloom and I refuse to let myself think that way. But I do still have plenty more hurdles to get over:
- this dadburn GVHD – it has overstayed its welcome and needs to go
- my eye….whatever that is
- my upcoming surgery – I will be so glad to finally be rid of these expanders
- getting my strength back after surgery
- staying alive about 30-40 more years 🙂
On Wednesday I plan to post on CancerMamma about my Birthday Fundraiser for the Cozy Closet. Please check it out, share it with your friends, and help if you feel led. Otherwise, I’m going to be here shuttling kids back and forth to baseball games, making crazy birthday cakes, and loving this wonderful life that I have. I will keep you all posted about surgery when I am lucid enough to type 😉
Lesley
Comments from CaringBridge
Ditte Sorknaes — 5/25/21
I will pray extra hard for that last point 🙏
Nancy Sullivan — 5/25/21
Prayers continue for all your concerns, Leslie!
Cancermamma 