July 5, 2018 · from Lesley’s original CaringBridge journal
So we just had our first week without chemo….and to be honest I miss chemo!!! It was predictable. It had a rhythm. I miss my chemo family!!!! Since I finished chemo I have had three surgeon appointments and spent the rest of the days on the phone scheduling said appointments, making big hard surgery decisions, scheduling surgery, handling logistics, talking to the radiation folks in Florida, talking to the insurance company, etc. etc. I am also trying to get school books ordered and next year’s school planned so we are prepared for the craziness which is ahead. I AM EXHAUSTED!!! We have managed to squeeze in a little fun and a little normal (well, old normal that now feels like new normal). We went to the library and the drug store for ice cream last Friday for the first time since I was diagnosed in January and we zipped up to the mountains for some trout fishing over the weekend. Yesterday we celebrated the 4th with our dear friends that we have celebrated the 4th with for years.
What’s the next step you ask? I will have surgery on July 18th. There are a couple of possible complications so we are praying, and ask that you would join us, that she gets clean margins so we don’t have to go back in and have a more complicated surgery. Three to four weeks after surgery I will need to begin radiation. This is where our next prayer request comes in…
We have been looking into Proton Therapy radiation since the beginning. When I went to Mayo they said I was an excellent candidate. The advantage of the Proton radiation over traditional radiation is that it will protect my heart and lungs. With left sided breast cancer this is especially a big deal as traditional radiation can try to avoid the heart but inevitably will hit some of it – this could cause complications on down the road, some could be big. My heart has already taken a little hit from the chemo so we would like to protect it as much as we can because we intend for it to tick for many years to come! Emory is opening a Proton Therapy clinic at the end of this year – just a couple of months too late for me. We have been in touch with the clinic in Jacksonville and they also agree that I would be a very good candidate for this. (https://www.floridaproton.org/ if you want to learn more) The problem is…insurance. My policy does not provide out of network benefits. We have applied for a gap exception and were denied. The next step is for the Dr. in Jacksonville to have a peer to peer review of my case with the insurance company. If that gets denied we can try to appeal. If that doesn’t work we can possibly try to switch insurance policies. If that doesn’t work it can cost us upwards of $100K. SO…please pray that this will get approved and we can proceed with making plans to relocate me to Jacksonville for a little while. Each step takes time and we don’t want to delay my treatment by a even a day.
Sorry I have taken so long to update. I’ve just been a little exhausted mentally and physically over here. I appreciate each and every comment, message, card, etc. The love showered on our family is overwhelming at times – always in a good way. And in other miscellaneous good news, remember my friend T who was pregnant? SHE HAD HER BABY!!! He is beautiful and healthy and I am so incredibly happy for her and her family. Keep praying for her, she has a long road ahead as well. And Mr. F has had a particularly hard couple of weeks and got some not so good news from his most recent scan. They also have some bills mounting up. Their family is our family now so we ache right along with them. When you pray for me, pray for them as well. Cancer stinks. I hate it. But I love all the people I have met and grown to love because of it – I wouldn’t trade that part of this experience for anything 🙂
Comments from CaringBridge
Betty Johnson — 7/6/18
Dear Lesley, I have been praying so hard for all of you and will certainly continue. I am so thankful that you are finished with the chemo (even if you are missing it). Can understand since it was pretty much the first time you and Marsh have had a consistent date. Will be praying about the mess of the insurance and the surgery and the proton therapy. Dealing with insurance companies is not fun, but God is still in control – of everything and you can know he loves you and will give you the strength you need. And how exciting about your friend and her healthy baby. How wonderful. Will also continue praying about the friends you have left behind and they continue therapy. Know that I pray for you, Marsh, Murphy, Jack, Eli and Gus!! God bless you!
Gale Roberts — 7/6/18
Praying for you and your new friends.
Kim Watts — 7/6/18
We fought the insurance fight when Taylor treated in New York! Do you know who your case manager is? Once I had her and could get to her in person things moved quicker. Still a fight, but you could see progress. Praying you get it all worked out.
Kathy Adams — 7/5/18
Praying for the details related to surgery that you mentioned, and especially for the proton radiation insurance coverage. God be with you.
Pam Cook — 7/5/18
In my prayers!❤️
Amy Peed — 7/5/18
Love you, sweet friend! You are a trooper and God has answered so many prayers in positive ways during this journey. Praying for you and your family as well as your extended “chemo family”!
Gayle Rawlins — 7/5/18
I’m your biggest fan! You inspire many!
Nancy Mitchell — 7/5/18
It was so wonderful to see you and your precious family. I am continually praying for you, admiring your strength and resilience… and knowing we serve a good God!
jan mathis — 7/5/18
I will continue to pray for you and all that you are going through. Have you reached out to the Cancer Society? They were a great help when Ted had cancer. They may can help with the cost if nothing else works.
Debbie Jacobs — 7/5/18
Praying for you and family and new family too.
Cancermamma 