Here’s the next batch of “drama,” my insurance. I’m insured through my work, and of course how can an insurance company that insures hospital employees save money? By sending them to that hospital where they work to receive care. Don’t get me wrong, my insurance is great. I mean I started chemo two weeks after my diagnosis, things moved seamlessly with scans and meds and referrals. But here’s the thing, my liver needs a specialist to resect the tumors. What if my healthcare system doesn’t have a specialist? What if they just want me to see some general oncology surgeon? With the first repeat CT scans done it was time to get the input of surgeons on how things look and what needs to be done, treatment wise. We decided to check out the top liver surgeons in the area. So I made an appointment with the in network surgeon at Loma Linda, and a surgeon at UCLA and City of Hope.
I started my surgeon tour out at Loma Linda, the day after my third round of chemo. The facility was nice, orderly, easy to navigate. Every staff member we met was cheerful and helpful. The “Fellow” came in and got a detailed history of all that’s been going on, very thorough, and not bad looking, I’ll add. Then the surgeon came in to go over my scans, offer his opinions, and answer any questions that I had. He had a massive mustache and big teeth that you didn’t lose sight of because of an unfading smile through the entire interview. Turns out as excited and pleased as my oncologist was with the shrinkage of my tumors, surgeons are not impressed. But he did declare my disease “stable”, meaning no growth or spread of the metastasis and across the board shrinkage of all tumors. So it can be said the disease isn’t progressing and is stable. However, he wants for all the tumors to shrink 30% before he’d even consider doing surgery. He also wants my tumor marker to be less than 50 (it was hovering around 250). I wasn’t expecting surgery right away but this surgeon came at me as though immediate surgery was what I was expecting and he was giving me bad news. The entire consult had this negative tone because he didn’t know how much I knew so even things I already knew were tainted as bad news. I did develop a greater appreciation for how extensive and dangerous my cancer is. So the way he tells it, this isn’t going to be some one and done surgery. The danger is that I’ll need to be off chemo for about three to four months, including prep and recovery. Turns out the surgery in the liver looks to be too extensive and would need to be done in stages, or require two surgeries. This is scary because in that time any cancer that isn’t removed can have free reign to spread. This is a problem specifically in the two lymph nodes with metastasis that wouldn’t necessarily be removed surgically. It’s always a little disheartening when a surgery that is supposed to save your life is currently today not even possible. If I had the surgery today the cancer would spread or I would die of liver failure. But surgeons are very good at making the long term the focus and not the current state of things. So he suggested stool softeners to make me more comfortable and decrease the backup my tumor was causing in my colon and adding a chemo med to increase shrinkage rates. He’ll follow up with us after the next set of scans. The really good news though was, we liked him. We felt him to be competent and realistic and without a big ego that can, at times, make what’s best for the patient take a back seat. So it was a huge relief that if my insurance company insisted on refusing another surgeon we might like better at least we had a competent liver specialist who wants to work with us and is approved.
You know what they say another day another surgeon. The following Monday I went to the City of Hope to meet with another surgical oncologist who also specializes in liver surgery. Same as the other doctor he went over my CT scan results with me and gave me a better idea of where my tumors are in relation to each other and how big they are. You see it’s very difficult to visualize a 3-D liver from a 2-D CT scan image. A CT scan basically takes pictures of all the organs in the region that is being imaged. It takes horizontal and lateral pictures and for a mere layperson, it’s very challenging to mentally put together the images so that they can make sense as a whole. It was quite enlightening how this surgeon explained and drew things out for us. The surgeon also gave me a better idea of the extent of the surgery that would be required. Which was very helpful in understanding why surgery right now is not simply “not ideal” but quite frankly, impossible. He says two surgeries won’t be necessary and would bring in an urologist to take out the metastatic lymph nodes in the same surgery as the colectomy. All together the surgery would take about nine hours, six on the liver alone. It was a little unnerving that he felt he could know so much without any idea of how my cancer would look after the two to three more months of chemo he was suggesting. Those kinds of predictions come straight from an ego (generally speaking). It didn’t help that I felt more like a liver and less like a patient. So I appreciated his recommendations, same as the Loma Linda surgeon, add a chemo drug to increase shrinkage rates and follow up after the next scans.
The very next day, Tuesday, I went to UCLA to meet with their surgeon. This surgeon was a recommendation from the secret doctor network. UCLA is the hospital for livers in the LA area. They are the liver transplant hospital of Southern California but the surgeon we were recommended was a general surgical oncologist not a liver specialist. This guy was way more personable, and reasonable, no surgeon ego to note. He came in with the same tone as the other two surgeons, the bad news undertone. No my tumors were not resectable, maybe they would be maybe not, depends on the chemo, add the additional chemo drug. He agrees with the first surgeon from Loma Linda, two surgeries on the liver may be required but perhaps not, depends on how they respond to the next rounds of chemo. He did explain the risks better. Right now surgery isn’t recommended because of the lymph node metastasis and risk of spreading while being off chemo for the surgery. But even when we are ready for surgery whether it’s one surgery or two, the risk is that removing too much of my liver with the tumors can lead to liver failure. Yes, the liver regenerates but one of the chemo drugs I’ve been taking is toxic to my liver so we need to be sure that the part of my liver that’s left after the surgeries is up to the job. If it isn’t up to the job and I go into liver failure, basically, I die. So that was cheery. Then to top it all off he says “yes, there’s the possibility that this cancer is curable, but that’s not guaranteed. I mean I’d like to say you’ll be cancer free and alive in five years but I can’t guarantee that”. That was the first time I’d had that thought, not being alive in five years. Overall I liked him, in addition to the first surgeon, if not more so. If I need a port that delivers specific chemo directly into just my liver then my insurance will have to approve him and he’ll be my guy. Otherwise, it sounds like Loma Linda will be place.
Despite how I felt, there wasn’t any real bad news. I felt pretty heavy and dark after meeting with all these surgeons but they hadn’t said anything I didn’t already know. I didn’t need to feel dark or bummed or sad but I was. It was a heavy two weeks. I felt myself get tired of fighting the “what if’s” and wanting more and more to slip into worry and self pity. I fought against the doom of perhaps not being alive in five years. But this is where I get supported and lifted up by peoples prayers and my amazing community. People to remind me of what’s true and what’s promised, most especially when things look quite the opposite. I do hate dismal undertones to my week though. But I ended my off chemo week feeling so good! I swear, my body is handling this whole chemo thing so well! My immune system is doing great, my white counts bounce right back. My tumor markers dropped to 193 before my third round of chemo. So I have a lot of things to be happy about and not disheartened about despite it all.
Here’s my “moral of the story,” the “takeaway,” the “nitty gritty,” the heart of the real struggle. Skip this paragraph if you hate encouraging things. Here’s some things I’ve read that have recently been encouraging, comforting, and help me be even a little bit brave. “Therefore may we continue to persevere, for even if we took our circumstances and cast all the darkness of human doubt upon them and then hastily piled as many difficulties together as we could find against Gods divine work, we could never move beyond the blessedness of his miracle working power. May we place our faith completely on Him for he is the God of the impossible.” If that doesn’t speak right to the heart of the matter, I don’t know what does. No matter how many of my doubts and fears become tangible reality, compiled with doctors projections and all the things that could go wrong, even then, I couldn’t move my circumstances beyond how powerful and surprisingly kind my God is. Sorry people who don’t believe in a God who does crazy irrational things on a bigger scale than your intellect, I feel sorry for you (and for myself for all the years I made God operate in my comfort zone of expectations and understanding). I’m learning that being prepared for the worst is really just a recipe for anxiety and unrealistic fears. For those of you who don’t know me, being prepared is my bread and butter. Instead, I’m preparing for invisible things to be worked out in my body and in the lives of a lot of other people. Does it mean I question my sanity? Regularly. But the alternative is truly terrifying and really insane. Impossible things it is! Something else I read said there is no reason why we shouldnt ask for great, too big for us, impossible things. Without a doubt, you will receive them if you have the courage to wait with “patient perseverance for Him and meanwhile doing those things that are within our power to do”. I can tell you for sure waiting with patient perseverance is the scariest thing I’ve done in my life!
P.s. Those quotes are from “Streams in the Desert”.