The chemo port
Yesterday I had a device called a chemo port implanted in my chest, which is, as some of you know, a common way to receive chemotherapy. They basically put a nickel-sized device with a silicone valve under a pocket in my skin, and then threaded the attached catheter up to a vein in my neck. Two incisions: one on the chest, one on the neck.
I had a twilight sedation which meant that I don’t remember most of the surgery, but I did wake up in time to hear the attending physician provide guidance to the resident who was stitching me up, and just to make sure they knew I was awake, I asked if they were cross-stitching a house or a flower on my chest.
I thought that recovery was going to be instantaneous, but have been walking around for the past 24 hours like Napoleon with my right arm mostly bent and stationary. It’s just a little sore and I’m tired, but definitely getting better. Hopefully it will heal up nicely in time for me to start chemo in short order.
After I met with the medical oncologist last week, I started to feel desperate. That night, I felt like there was an icy cold stone burning in my chest all night, and a sense of panic that I had made a strategic miscalculation: I was so focused on getting the surgery right (which is actually very important, and I am 100% sure that I have the right surgeon on board) that I neglected the medical oncology piece until it was too late. I also felt that I couldn’t consult on the oncology til I had a definitive pathology, which took a while.
I was under the impression that there was limited variability in the chemo regimens, but started to realize that I might be wrong. Despite the limited amount of good data on the relative efficacy of the regimens, I felt that I needed to talk to people who had spent more time thinking about it in order to formulate a strategy that met my objectives: 1) maximum efficacy before surgery to shrink / halt tumor growth an destroy any small tumors that are not yet detected, and 2) allow for optimal and long-term performance of the organs I will have remaining after surgery, with minimal long-term risks and side effects.
At the same time, there is an urgency to start treatment. This is a fast-growing cancer that likes to spread. Leiomyosarcoma (LMS) is like the Mind Flayer that controls all the roots and trees in the Upside Down world in Stranger Things (seriously, it is pretty much like that in so many ways — including very new research showing that heat might be a feasible treatment).
So what I needed were the best people who had spent their lives thinking about ways to fight LMS who would be wiling to see me within a week.
So I put it out there to God: not in any graceful way, but in a desperate, pitiful, begging kind of way. I had no idea how to make this all happen on the timeline that I needed (now).
And these things happened:
- A friend of mine with breast cancer texted her patient advocate (PA) asking for the name of someone I might try to see at MD Anderson. The patient advocate, who says that pretty much nobody has sarcoma (true), happened to be with a sarcoma patient in Houston and to have had an appointment the next day with the Godfather of sarcoma, who was not taking new patients. The PA called me, I sent over a synopsis of my case which he hand-carried to the Godfather the next day — and the Godfather agreed to see me. I have an appointment with him in Houston on Monday.
- I had read about an ex-MD Anderson doctor in LA who gave free second opinions — this guy together with the Godfather pioneered a lot of the drugs that are used in treatment today. I looked at his CV and it all seemed too good to be true, but I emailed him anyway. He called me within seconds, and said that for him fighting sarcoma is a passion and not a job, and that he would help me. He made room in his schedule to see me on the very next business day, Monday.
- Early Monday morning, I met with my surgeon since I had sent him more questions than any human could possibly answer via email. I told him about my quest to find out in short order about treatment options, and with a quick text he was able to get me an appointment with the head of clinical research / director of sarcoma oncology at Cedars-Sinai in L.A. that same day.
So Monday, I was able to see two doctors highly experienced in sarcoma with different perspectives and rationale on how to treat it. Both laid out strategies and provided alternatives to the original opinion I had received, and shared different ways of administering the therapies as well. Both laid out arguments for me that convinced me of the value of having chemotherapy in advance of surgery, laying to rest my question regarding whether I could achieve the same thing by basically eating kale and mushrooms. So Tuesday, I was able to have my chemo port surgery in peace.
Next Monday, I’ll see the Godfather of sarcoma. And in the meantime, got an email from a college friend who, I was surprised to learn, is a cancer doctor at MD Anderson, saying that she was glad to help, and has already run recon for me in advance.
I’m feeling grateful. Through this whole experience I’ve felt that I’m both the luckiest and unluckiest girl in the world. But now I’m pretty sure that I’m the luckiest.
The bright side
As if there wasn’t enough bright side above: I have a friend in England, who said that the night she learned about my cancer, before she went to bed, asked of the universe that she should find a way to visit me in San Diego. The very next day, her boss asked her if she could travel to California. On Friday, she surprised me on my doorstep.
The past few weeks have been like a walking yearbook. I’m annoyed at myself for not taking pictures of every single visit and every single friend I’ve had the joy of seeing, but I’ll leave you with a smattering of some of the many happy moments of this past month.