August 15, 2018 · from Lesley’s original CaringBridge journal
The past couple of weeks have been quite a whirlwind of change (now I have that whistling from the 90’s song by the Scorpions wafting through my mind…). As I’ve been saying for quite some time I have been very interested in Proton Therapy as the type of radiation for my cancer. I did research when I was first diagnosed and learned that it has many benefits for patients with left sided breast cancer – the main one being that it protects the heart and lungs more than traditional radiation. When I went to Mayo back in January they said I was a perfect candidate for it. So in my mind all this time I knew that was the direction I wanted to go when we got to this stage. Several months ago I started working with the staff at the Proton Therapy clinic at the University of Florida in Jacksonville to get all the ducks in their proverbial rows in plenty of time. We knew we were fighting an uphill battle with insurance but I was hoping we were getting a good enough head start. Things were chugging along fine until the week of my surgery, then it all started breaking down. Phone calls weren’t getting returned, a lot of miscommunication happened and to sum it up (without just berating those folks – because that serves no purpose and isn’t the point anyway) two weeks ago I got a phone call from them basically saying they were not going to treat me and I would likely “do okay” with conventional radiation. This was extremely stressful because what I felt like was a well laid out and well prepared for plan was falling apart and big decisions were going to have to be made in a very short period of time. For those of you that have spent much time at all around me you would know that this is NOT my M.O. While I can fly by the seat of my pants and wing it just fine I am very much the stereotypical Type A, micromanaging planner type of gal. (okay, I am sure there are some really close to me laughing at that statement too…I get it…truly I do, but you know what I mean) I like to be in control. I don’t like feeling backed into a corner. And I don’t like taking “no” for an answer. Now while these qualities can come in handy in many situations, they can also be quite a stumbling block for my faith and trust in God. What I saw as a disaster was nothing more than God nudging, or shoving, me in a better direction. This was Ephesians 3:20 in action, what was to come was better than what I was asking for that week. I started to look for other Proton facilities that were close enough to make this feasible and quite frankly that would want to take me on such short notice. When I was working with Jacksonville on insurance appeal letters I came across the website of the treatment center in Knoxville (they had some great literature posted) so I gave them a call. Everyone I spoke with was so kind and it was obvious they had the patient as first priority and they truly just wanted to help people get better. They were more than willing to scramble to get my records, get me a quick appointment, and the money…let’s talk money for a second.
We knew going into this that insurance most likely would not cover it. While Proton Therapy has been around for a while it still isn’t widespread enough for insurance to not see it as still experimental/investigational (these are their words to get out of paying). The quote we had gotten from Jacksonville ranged anywhere from $76-110K depending on who I spoke to on what day. Knoxville is going to be around $60K. The other big difference is that in Jacksonville they wanted all the money upfront whereas in Knoxville they will set up a payment plan for us. That in itself was a dealbreaker/maker. I spent a little over a week making phone calls, getting records transferred, and filling out paperwork. They had me an appointment in less than two weeks (8/14)
We felt like it would be best to have an appointment with the “regular” radiation oncologist in Augusta first though – that having his perspective to compare to would give us the most information to make the most informed decision. Heading into that appointment I was bracing myself to be met with an unfavorable reception to the idea of Proton Therapy – it was anything but. He was very open to this option and was actually quite interested in learning more about it himself. He went through the specifics of my case and gave me a few questions he would want answered before making that decision. The main one, what we felt like was our litmus test, was “would Proton Therapy treat my skin with as high of a dose as conventional radiation?” This is particularly important for me because there were cancer cells in my skin where the tumor was. He said that this would be the most likely place for the cancer to come back if it did so it was imperative that my skin be thoroughly treated. He also gave me his cell phone number and asked if I would pass it along to the Proton doctor to see if he would give him a call to discuss my case. I did, and they spoke before I came up there.
I had the first appointment of the day yesterday, bright and early at 7:15. Walking into this place we felt like we were walking into a country club – it is beautiful and calm and everyone we met was so kind and pleasant. We met with the doctor and he explained everything very clearly. We asked “THE” question and his answer was a resounding “yes.” I was kind of in disbelief because I was just expecting it would be even more confusing and difficult. I kept asking more questions, as if I was trying to find something for him to say “no” to that would make this the wrong decision. I couldn’t find anything. In fact, he pointed out another advantage of being treated with Protons that I had no idea about (imagine that, I did not in fact research this to death like I thought I had!). He would be able to treat a set of lymph nodes along my sternum that conventional radiation can’t treat at all because of the high amount of radiation that would go to the heart and lungs. This was a bonus! We told them that this was what we wanted to do and completed all the other details needed so that he could begin working on my treatment plan (all the computer stuff). It was kind of surreal. It was too easy. We spent the next couple of hours driving around looking at long term rentals – and getting distracted by the gorgeous mountains – we settled on a cute little 1940’s house and told the owners we wanted to rent it. That was that. We’d finalized the next plan. (As far as when I will start we don’t know an exact date – but most likely week after next, 8/27ish)
I am still not sure I believe it – it seemed way too easy for something that had seemed way too hard just a week prior. As we drove home it was hard for me to succumb to the relief of having this decision over with. I still anticipate something to go wrong. And while it still can, for today I am trying to just be overjoyed with God’s goodness to us and realize all the details he had worked out ahead of time to make all these puzzle pieces fall into place. The financial burden being the biggest one – the payment plan is huge – that is really what makes this possible. And also, they require a 25% deposit. The amount of money that has been donated to our GoFundMe account so far and some other personal gifts is almost exactly that amount. We don’t even have to scramble to come up with that!
There is still the second guessing of myself wondering if I am making the wisest decision – I am going to recognize that this is still me wanting to try to control it. As Marsh keeps reminding me – God has my days numbered no matter what my decision is – whether that is to stay in Augusta or go to Knoxville. This is both comforting and maddening at the same time. We are praying that it is a big number and that He is leading us to the wisest decision to make that happen.
Now speaking of puzzle pieces, at the treatment center there were several older folks working on some big puzzles in the lobby area (remember folks, I am the youngun in this whole cancer business – and as far as Protons go, prostate cancer is one of the biggest uses so more of the people there were older men and their wives). I fully intend on getting in on some of that action! 🙂
Comments from CaringBridge
Melanie Arias — 8/25/18
These details matter and are part of your overcoming testimony. Praying for your stay in Knoxville. Smell the mountain air and breathe in your healing.
Debbie Motter — 8/16/18
Wonder woman, you make me proud! We think about you everyday.
Delores Brooks — 8/16/18
I-LOVE-YOU!
Gerry Brooks — 8/15/18
We will continue to pray for you and your family. We will pray that God will continue to guide you and the Doctors around you. May peace be with you and your family.
Jill Pendley — 8/15/18
That’s so wonderful, Lesley, and glad that my small gift was of some help. Know that Dayspring is praying for you!! 🙏💜
Nancy Sullivan — 8/15/18
So glad this is working out for you, Leslie! We are IPC members and are praying for you daily. Also for your family
Hope Buchanan — 8/15/18
So glad to know that things are falling into place. And puzzles…I have tons from when I was recuperating several years ago. I’ll load you up! 🙂
Pam Cook — 8/15/18
So glad it all worked out! God is still in control! Love to you and your family!!❤️❤️
Jan Davis — 8/15/18
Praise God! Isn’t it wonderful that He is in control and you don’t have to worry. Just rest in that and concentrate on getting well.
Debbie Parker — 8/15/18
I’m so thankful everything went so well! Praying it continues to do so! Love you!!!
Cancermamma 