May 18, 2021 · from Lesley’s original CaringBridge journal
Well, a lot has happened since I last filled you all in. We did get the biopsy results back – no psoriasis came up – it was all GVHD, some of the acute variety, some chronic. Over the past month we have adjusted meds, added new ones, and I’ve tried to be ever so vigilant with my all my lotions and potions. It is making progress slowly but surely. At one point there were a few weeks that my hands and feet hurt too bad to do much of anything – you don’t realize how valuable those body parts are until they are out of commission! So, keep praying this gvhd away! With the GVHD flaring up so bad, my lymphedema in my left arm got triggered to act up. I am going to PT twice a week now to help with that and we are in the process of getting me a compression machine that looks like I’m wearing a space suit, or a Stay-Puff marshmallow man costume that would allow me to get treatment at home as well. In addition the lymphedema in my arm, I have had some generalized edema all over, especially my legs. I have described how I felt as being claustrophobic in my own body. We are really hoping that these things can calm down and clear up as to not interfere with my surgery scheduled for June 1. I am finally going to say good-bye to the expanders and have the majority of my reconstruction done. And in the most recent episode of “Whack-A-Symptom(Mole)” my left eye decided to act up and it feels like it is full of sand. I guarantee you I have spent no less than $100 on OTC eye drops/gels/ointments in the past few days. It is soooooo miserable!
The beach!!! Several months back Gus started asking questions about the ocean and the beach and it hit me that he has never seen it. A good friend recently moved to South Florida and we have been wanting to get together. I called her up and made a last-minute Spring Break trip! It was so much fun and exactly what we all needed. The weather couldn’t have been more perfect and she waited on me like a queen. I really have the best friends in the world. I left a few things at her house – I guess that means I just will have to go back soon to retrieve them 😉
Gus had a small surgical procedure (a repeat of the one he’s had three times prior) right after we got back and has recovered amazingly well. We have our post-op appointment tomorrow and hope to be discharged from having to go back!
Baseball…. if you are not a baseball family, then let me tell you – it pretty much takes over your life in the Spring. Murphy was very excited about getting to play varsity baseball this year. The season was busy but fast and fun. As soon as his season was over Jack and Eli’s started. I’m trying to work on my art of picnic meals that aren’t just sandwiches. So far, stromboli is winning. When we don’t take a picnic, we either eat dinner at 4:00 or 9:00 – nothing reasonable. It’s a crazy time of year, but I do so love to watch my boys play!
Sooooo many other things have been going on – I am fully vaccinated against Covid now! We have been catching up on everyone’s doctor’s appointments. And IT’S BIRTHDAY MONTH!!! Murphy had his 16th and Gus had his 4th birthday on Sunday the 16th. Jack and Eli have theirs coming up on the 25th, and then my 1st New Birthday is the 26th! We have had our first visit to DDS for a learner’s permit – where’s the Ativan???!!! (just kidding) It seems like I’m driving somewhere every day and then I crash on the days in between. I can tell that I wear out more than I used to, but I am still so thankful to be doing so many “normal” things these days.
A fellow transplant patient passed away recently and it was a big gut punch. I can’t even get into words all the emotions it evokes. I am coming up on the one-year mark of my transplant – can you believe that?! ONE YEAR!!! That also means that I can connect with my donor. I am thrilled and nervous at the same time – how exactly do you express thanks for saving your life?! Well, I am sure I could give you more stream of consciousness/Google calendar versions of what our life is like these days, but I don’t want to bore you too much. I am thankful for everyone who continues to lift me up in prayer. I met someone last night that a friend introduced me to and said “hey, this is Lesley! This is who we have been praying for!” and it is the most humbling and heartwarming experience that I have gotten to have many times over the past several years. I know that even when I’m slow with updates (because my hands hurt to bad to type, I have a bunch of kids, I’m forgetful, and now I have something wrong with my left eye…) there are so many out there lifting me up in prayer. It does take a village to keep me running – and I am convinced I have the best one there is. Because I know you all like my bulleted prayer list, here is what I would ask you to continue to pray for:
- the skin….the gvhd skin rash…I really want it to go away
- the lymphedema/edema – the fat arm and feeling like I’m Eddie Murphy in the Nutty Professor is not fun
- my upcoming surgery – that nothing else will cause it to be rescheduled, that everything goes as planned, recovery is quick, no infections, all that jazz
- MOST IMMEDIATELY – that my left eye will calm down and clear up – I want to scratch it out – it impedes driving and I need to drive to ATL tomorrow – I even bought a patch, and yes, I am going around saying “argh!” and speaking pirate all day….
Thank ye mateys, I’ll be blabberin’ on another update soon.
Lesley
Comments from CaringBridge
Amber Telleen — 5/18/21
Continues prayers! Love Amber
Nancy Sullivan — 5/18/21
You crack me up, girl! Of course we will continue to pray even harder!
Kreg Bryan — 5/18/21
Thanks for the update! It really helps to focus my prayers – and is encouraging to hear about the day to day of your lives. Still praying!
Kim Watts — 5/18/21
Praying!!! I remember waiting for that one year Mark, it’s now been 18!!!
Cancermamma 