September 20, 2019 · from Lesley’s original CaringBridge journal
I know it has been a while – it has been a busy summer for us. I am sure you have been on pins and needles waiting for my next post, but you will have to wait – I feel compelled to write a public apology to my husband’s recliner (because that’s what the folks do these days, right? the whole “open letter to…” thing).
Dear dirt colored recliner,
I feel deep remorse for the unkind words I have spoken about you. I have called you the “old man chair” too many times. I mocked your USB charger and “lazy” buttons that raise the footrest and adjust the headrest. These features have been so helpful to me – got me through some pretty tough days. I am ashamed. Very ashamed. You and I have accidentally fallen in love. I truly didn’t see it coming and have been caught by surprise. I must say you have swept me off my feet literally and figuratively. I feel a little strange saying this, but I think I love you. Do you think Marsh will be upset with our relationship? Is he going to be hurt? I don’t think I’m presumptuous to say that I think you feel the same way too. We have sort of become one during this summer romance of ours. I have been humbled by your so graciously taking me in despite my arrogance. You have supported me during some rough days and nights. Please forgive me. I will never speak ill of you again.
Sheepishly yours,
Lesley
So yes, I have officially lost it. I’m writing letters to a chair. Seriously though, I am so glad Marsh picked out this chair! When my doctor told me that I’d have to sleep in a recliner for the first several weeks I was not prepared – thankfully though, we had just bought this particular chair a couple of months earlier – we moved it to our bedroom and I don’t know when it will be moving back to the living room. I have spent most of my nights since July in it. I tried the bed out for about a week but then my back got in such a way that I needed to get back in it. I have slept surprisingly well in it.
A quick rundown of our summer:
Gus had his surgery in June and it went much better than the January version of the same surgery. So far he has healed pretty well and we are hoping he is done with the hospital (though we will truly miss his surgeon – he has been a part of our lives since Gus was born).
My surgery itself went well. It has been a long, slow, recovery though. I was not allowed to move my arms for the first 4 weeks pretty much. T-rex, that was me. It has been a bit tricky determining if I was truly “feeling better” because after each expansion I am very sore and new pains pop up. The hardest part has been not being able to pick Gus up as much. The big boys have been a huge help here, and Gus is so excited when I’ve been able to and he says “mamma all healed up??!!” It’s no joke this reconstruction business! My scars have healed nicely. My skin and muscle on the left side however, does not appreciate this whole stretching business. It is screaming “please, please, no more!” and “I refuse to comply!” We have spaced out expansion appointments and that has helped some but not enough. I saw my radiation doc in Knoxville for my follow up there and we got his opinion on how things were looking. (bonus! trip to TN and visits with friends!) He was very encouraging in that he didn’t say “hmmmm, this doesn’t look good” but rather that he had some ideas he thought would help. He put me on some medicine that in clinical trials has shown to improve radiation fibrosis (what is causing my skin/muscle to not stretch). I will take this for six months. He also wanted me to look into hyperbaric oxygen treatments. When I got back home I shared all of this with my plastic surgeon. He was encouraged as well and gave me a referral to the hyperbaric oxygen doctor. My thoughts on all of this at this point was “put me in a quiet room for a while and insurance pays for it – where do I sign up?!” Well, be careful what you wish for….
I had my consult with them this past week. This doctor was encouraging as well. He has not treated someone with my condition yet but said that if my TN doctor has seen this help he was all for giving it a try. He said he didn’t see any reason why it shouldn’t help. Here’s the kicker though – they are two hour treatments – daily – five days a week – for 8 weeks. Mic drop….. I was not prepared for that. Marsh was not prepared for that. Neither of us is excited about that. Not quite sure how we are going to swing this. (Augusta is an hour drive each way)
We actually got school started amongst the recovery and t-rex arms. It has been going well. For the first time in a long time we started the school year off well and we’ve been making good progress. (Between having a high risk pregnancy, new baby, and cancer the past three years have had a few bumps in the road) I don’t want to mess this up!!! We will need help again. We don’t know what it is going to need to look like. More prayer. More trusting.
We don’t know for sure when this will happen. We have to get insurance approval first, and that hasn’t happened yet. Most likely early October. I am hopeful that this will help but dreading it at the same time. I do feel like if it does though, it can hopefully open a door for more women with similar situations in the future. Kind of like fighting for my Proton radiation (which insurance denied every single appeal – we will be paying for that for a while), if being the squeaky wheel helps another woman down the road, then I’m glad I’m doing it. But it’s very overwhelming to think about.
So as for tonight, I’m going to go snuggle up with my new love the recliner. Tomorrow I’ll go watch my kiddos play soccer. I’ll sew some more “Headbandas” because folks have been loving them. And I’ll deal with logistics when I know more. I am going to trust that God will take care of all the details of this too. He always has, even when it seemed insurmountable. Right now I am just thankful that I am here to see my kiddos do all the things they do. Today I’ve watched them rescue two baby squirrels and declare them pets, watched Gus eat his Friday ice cream “all by myself” in sheer delight, they enjoyed a trip to town visiting with friends. I’m thankful, so thankful that I am still alive and have the privilege of witnessing all of God’s goodness to me.
Comments from CaringBridge
Debbie Parker — 9/21/19
Praying insurance will cover the chamber, and that it is a total success!! Give all those boys hugs for me (but not too tight). Love you!!
Theresa Morgan — 9/21/19
So glad to know you and your lovely family. Praying all goes as planned with your health 🙏👪
Nancy Sullivan — 9/21/19
You are such an inspiration to us all, Leslie! Prayers lifted daily for you. Wish I had known you when you were at IPC!
Gerry Brooks — 9/21/19
You are one of the strongest women that I have ever known, and this strength is both Faith and Family. These are two items that all of us need but sometimes we realize it too late. Dick and I send our prayers to you and your family.
Cancermamma 