My post-op follow up isn’t until the 20th, so I probably won’t have any news from pathology or any more details about the tumors they removed this time until then. I’ve been trying my best not to think about it, but I’m not a very patient person especially when it comes to things like this. I also hate feeling out of control and right now I need that information to really know what’s going on and what the next steps are. These are the main questions floating in my head right now:
- Why the @^&#^&#& didn’t three of these four tumors show up on anything? Since August, I’ve had an x-ray, two ultrasounds, two CT scans, an MRI, upper endoscopy, colonoscopy and an octreotide scan. How are we supposed to know if there are other tumors, if they’ve come back, etc. without cutting me open??
- Can it be determined how the tumors have spread? Through my lymph nodes or (hopefully) pieces of the tumor breaking off and implanting/growing in other areas?
- Should I send some tumor cells to the place in Pittsburgh to grow my tumors in their lab to try to come up with a targeted chemo? Is there anything else that would be worth trying as a preventative measure or am I stuck in the bucket of “just wait for more tumors and have them surgically removed when they get bad enough” camp?
The good news is that I found an awesome primary doctor. Luckily one of my fraternity brothers is doing his residency in internal medicine at one of the Penn offices. He gave me a list of docs that he knows and he recommends. Unfortunately none of them were taking new patients so I went ahead and made an appointment with one of the only two IM docs taking new patients. When I told him who it was, he was not okay with it. Luckily he remembered a guy that he’s known for a while who joined recently. After some sweet talking the patient registration woman, I managed to get an appointment with him about two months out.
That two months was last Thursday and for the first time in this whole process I felt a huge sense of relief. My friend talked to Dr. Maier before my appointment to fill him in on some of my back story (which was super helpful and thoughtful). I spent about an hour with him going over the past 3+ months, all of the tests and where I am now. Before I said anything about why I wanted a new primary, he said that he wants to start taking over responsibility for guiding my care. He’s not the right person to read my scans and bloodwork, but he’s going to figure out who that person is (a surgeon? medical oncologist? gastroenterologist? a team of the above?). He also wants to take over my pain management from the surgeons to try to get to the root of my back pain. He’s thinking physical therapy may be the next stop, but he wants to review all of the tests that I’ve had done to see if any clues can be found in them and he wants me to heal up more before starting PT. I guess seeing that I couldn’t sit up from laying down on the table was a sign that I’m not quite ready for intense work on my back. I also love the fact that he doesn’t want me to go into the office for every conversation – we’ll handle what we can over the phone and through messages through myPennMedicine (online health records, appointment requests, etc.). This means less disruption of my daily life and less time sitting in a waiting room = awesome.
He said it’ll take him a few days to ask around and do some research about who is the best overall point person for my cancer treatment/follow up, but I feel better knowing that he’s taking some of the leg work off of me, I have a trusted friend on the inside who vouched for him and he has a proactive attitude.
In terms of physical health, I’m really sore. Both my muscles from the incisions and my insides that got all manhandled and sliced and diced. I’m starting to eat better, but still not much. Still really tired. I also feel like I’m coming down with a cold – sneezing, runny nose, coughing – which is excruciating without abdominal muscles. I was hoping to make an appearance at work today but barely slept last night and have been really rundown and nauseous today. Hopefully some Advil PM will help me sleep better tonight and tomorrow is a better day.