I am not even sure where to start this post. I kept wanting to update my blog but I kept waiting to hear from one doctor or another and it seems like this is all I have been doing in the past 3 weeks. To make a long story short, I have been experiencing worsening pain in my abdomen since the beginning of December. My team at Shands (the interventional radiologist (IR) who performed the Y90 procedure and my beloved GI oncologist) wanted to first rule out a stomach ulcer. An endoscopy was performed and came back clean. They were then convinced that the pain is coming from the gallbladder despite the fact that an ultrasound came back negative. My local “team” is basically my GI doctor and my new oncologist. I am not sure I mentioned this yet but in the midst of all this, I decided to change local oncologist. I felt that my chemistry with my previous one had died and my interactions with her had become difficult. It was an agonizing decision but after a lot of back and forth, I established with a new one who, it turns out, works closely with my GI and has trained at Shands so knows my doctors there well. During our first visit, I explained to him that I needed him to “see me” and “treat me” as a long term survivor. I told him that I had been given the stats and that I understood very well what my prognosis was but I also explained to him that what kept me going was to think of myself as an outlier. He agreed and told me he thought he could help me. He wasn’t sure what could be causing the pain but he didn’t think it was my gallbladder and referred me back to my GI. My GI consulted with a local IR and they were worried about the dissection of my hepatic artery. The IR thought we could try to put a stent in the artery to open it. I called back my Shands IR, had this discussion with him and he still thought the pain was coming from the gallbladder despite the negative ultrasound and if the pain got worse he was recommending a nuclear medicine scan (HIDA scan) that would specifically look at the bile ducts. He advised against trying to put a stent in the artery, explaining that he couldn’t even get into the artery and he was afraid it could make matters worse. At that point, the pain was getting worse and he suggested pain meds. This was a couple of days before Christmas, all I wanted was to enjoy Christmas with my family. I surfed through the next few days but after another “pain attack”, I texted my GI (after hours) and he prescribed medications that I was not thrilled to take, pain killers just scare me. By then I had requested my disc from the scans performed earlier in the month at Shands and the next morning, I brought them over to my GI. He reviewed them with a local IR and I met with the local IR the following day. He explained how he believes the pain could be coming from the dissection and how it would be worth trying to put the stent in. He doesn’t think the pain is coming from the gallbladder. My GI was pretty clear that he thought I should just let this local IR do this procedure. So, this is where I was left, with two different opinions and a decision to make. What does one do when they are caught in the middle?
Not knowing what to do, I tried calling my Shands IR on December 30th but he had already left the office and was not working for the next few days. So I emailed him and ended my email explaining how difficult it was to be given different medical opinions and how I was careful to not step on anyone’s toes. I got a call back from him the next day, and here’s where I am so impressed. He started off telling me to not be worried about stepping on anyone’s toes and that if I decided to do something else than what he was recommending that it would not hurt our doctor-patient relationship! Then he suggested the following (which is what I was thinking because its kind of a way to make everyone happy). I will have the HIDA scan to look at the functioning of the gallbladder. If it’s the gallbladder then we deal with it. If not, then he said that I can have the angiogram of the liver done locally and see if the local IR can open up the artery. It will be a month since the other procedure so maybe it is looking better now. He said “as much as I hate to be wrong, I would love to be proven wrong!”. I just really liked his attitude and how he approached the whole thing. In my mind, that’s a really good doctor! I feel like I can go back to my local GI doctor and not have him get the sense that I don’t want to trust him and his team. It makes sense to start with the HIDA scan as it is a less invasive procedure anyways.
So needless to say December has been challenging. I feel like chemo was easier to handle compared to this but I am hopeful that we will soon get to the bottom of this pain and resolve it so that we can move forward. We still had a beautiful Christmas, we were blessed to have family with us, both sets of grandparents and my brother and family who hung out with us for a whole week. Everyone was extremely helpful and generous – THANK YOU all!
It is time to welcome the New Year and focus on gathering all my strength to move forward, continue to heal, and to spend quality time with family and friends.
Happy New Year to all!