Updates
- New Diagnosis, New treatment
- Insurance Challenges
- Facing Anxiety
Cheers and Fears
One of my favorite shows in the 80’s was Cheers. Funny, sharp and endearing, you just wanted to go visit a place ‘where everybody knows your name’ just like one of the verses of the theme song. I was reminded of the show when I noticed that there are now two places in my life where, when I walk in, I am welcomed by name by multiple people: Decatur Presbyterian Church and Clearview Cancer Institute. The first is a joy to be known by my church family. The second, well; there is a kind of comfort to be known and well-tended to by the professionals at CCI.
The receptionist recognizes me and starts my check-in as I am walking up as he greets me “Mr. Bailey”. My Oncologist will tease me in the hall for being a troublemaker. The scheduling nurse and I have an ongoing Dad Joke marathon. My treatment nurse will often offer me a premium seat by the window knowing that I spend most of my day in the infusion center working remotely while I receive my treatment. I know that I am blessed to have made the connections with a care team that communicates well and works together – not just CCI, but at Vanderbilt and with my wholistic oncologist as well. All these people know me and have been working for the past two years to keep me alive, and I don’t feel like a number to them. But at the same time, I would rather not know them at all. I know them because I have cancer. I would never have encountered them if it weren’t for this life-threatening illness. I am glad to have them in my life, but the circumstances were not my choice.
And we are in a new stage now. The good news is that from that the diagnosis from January (the three small masses in my liver and the metastasis in my rib and hip) have all resolved. Which was a great result considering how many areas of concern had developed. However, in the last scan, two new small tumors have appeared in my liver. While they are small, the big concern I have is they developed while I was in therapy. That may mean that the current treatments are becoming less effective. I have also reached a point where my care team decided that after a combined 18 months of aggressive chemotherapy, my body needs a break. It was just getting very hard to handle that treatment regime. So, we have discontinued chemo for now, and are just focusing on immunotherapy, which has a much lower side-effect burden. Last week I had only an hour of treatment, down from 7 hours with chemo, and I only need to go in once every three weeks. There was nausea and fatigue, but it only lasted a day, not five days with chemo. That leaves the two new tumors to deal with, and we have an option for that.
There is a new treatment called Histotripsy which uses an ultrasonic pulse directed at a liver tumor, causing cavitation that breaks down the tumor tissue. It’s a non-invasive way of destroying cancer tissue and has been shown to be very effective (90% + success). But there is a hitch. While Histotripsy has been approved by the FDA and is not considered experimental, Blue Cross of Alabama considers it ‘investigative’ and does not cover it. United Health in Alabama covers it. Blue Cross of Tennessee covers it. I have Blue Cross of Alabama. We are gearing up anticipating a denial and getting ready for a fight through an appeal process.
This is frustrating on a number of levels. Histotripsy is not a new technology, but an evolution of an existing technology applied in a new way. For decades, ultrasonic waves have been used to breakup kidney stones – Lithotripsy. It’s effective and safe – I have had it done twice to crush kidney stones, and it’s worked. Applying it to liver tumors is a natural and proven extension of the technology, even though it’s a radically different target and disease. It very much seems like a better option than surgery – less risk of complications, faster recovery, less discomfort, shorter procedure, shorter anesthesia, reduced hospital stay. Honestly, it seems like a less expensive procedure as well, which I think would be to Blue Cross’s advantage. I don’t get the math on their side, and I am frustrated because it’s my body – and life – we are pressing through somebody’s spreadsheet. If it was an experimental procedure with unproven outcomes, or low statistical samples, I would get it. It’s been approved by the FDA since 2023 – it’s new, but over 800 patients were treated in 2024, and hundreds more already this year, all with almost immediate, measurable successful results.
So, here we go. For the first time in two years of fighting liver cancer, we are facing a potential delay in treatment, or a second-choice treatment (Surgery), due to an insurance dispute that goes against a qualified medical recommendation by multiple physicians. For the most part, I have been incredibly blessed with an excellent care team that I have come to trust through experience. I have even had a very positive experience with Blue Cross with quick coverage determinations and good support and service. I just hope that will continue.
Even if approved, we are going to face a challenge. We have already expended our FSA long ago, and will be paying co-pays and fees out of pocket – and there are many with multiple scans and treatments ongoing. Cost will continue to be an issue for us.
There is one other reality I am facing: emotional fatigue. It’s been two years since my initial diagnosis, and I am tired. Just really tired of the toll this is taking on my family, my children, my financial wellbeing, my mental health and spiritual strength. Since hearing that I have two small tumors that have developed while in treatment, my anxiety has greatly increased. I had a pretty good ability to pray through fear and reach a moment of calm and peace, but that has become much harder now. I still trust God, believe in Him and His plan – I don’t need to see it all, but walking forward in the dark with even more concerns now is simply harder. I have seen God provide my daily bread of hope, comfort, and provision so many times since – I have more evidence of His gracious providence in the last two years than in the past 40 years. But cancer weakens you, humbles you, hurts you, and keeps whispering to you how you have every reason to be afraid.
A couple of weeks ago, I was able to be at a Zach Williams concert. One of his best songs is “Fear is a Liar” Here is the chorus:
Fear, he is a liar
He will take your breath
Stop you in your steps
Fear, he is a liar
He will rob your rest
Steal your happiness
Cast your fear in the fire
Cause fear, he is a liar
I have had that song on my playlist throughout this experience, and its powerful message is an important check in broken thinking. Another quote that I have often thought of through this experience comes from one of my favorite novels: Dune by Frank Herbert. Recited by a couple of the characters at key intense moments, it’s used as a mantra to gain focus.
“I must not fear. Fear is the mind-killer. Fear is the little-death that brings total obliteration. I will face my fear. I will permit it to pass over me and through me. And when it has gone past I will turn the inner eye to see its path. Where the fear has gone there will be nothing. Only I will remain.”
But the best and most empowering message comes from Living Word In Psalm 23:
The Lord is my shepherd; I shall not want.
He makes me lie down in green pastures.
He leads me beside still waters.
He restores my soul.
He leads me in paths of righteousness
for his name’s sake.
Even though I walk through the valley of the shadow of death,
I will fear no evil,
for you are with me;
your rod and your staff,
they comfort me.
You prepare a table before me
in the presence of my enemies;
you anoint my head with oil;
my cup overflows.
Surely goodness and mercy shall follow me
all the days of my life,
and I shall dwell in the house of the Lord forever.
I would note a couple things here. Unlike the thoughtful but self-help motivation of the Dune quote, in Psalm 23, the help and rest and blessing comes from God himself. It’s not even the idea of having faith – faith is just the pipeline through which the living water of hope comes – but it comes from God. Faith is not an end source of hope, but the connection to the true source of strength and encouragement, which is God himself. When I am weak, tired, angry, lonely, and frightened, I can’t even find the strength to motivate myself to hope. It’s then that I receive hope as a gift, I just need to open my hand to receive it.
It’s God who knows my name. It’s God who is glad to see me, welcome me, give me a cool drink and is ready to hear all about my day, good or bad. Or just sit with me in companionable silence. And in those times when I recognize his presence, it’s then that fear falls to the comfort and peace of God.
Note: Mia took the picture of Mason this summer at a lake in Ohio, and it just seemed close to perfect.