Wednesday, August 28, 2013

There was no I-5...

So if you work with me you'll get the "I-5" reference, for everyone else, lets just say, communication was poor.

We have a new plan - subject to change at any time of course. I received a call on Monday from the fellow who works with my oncologist, he had promised to call after the meeting of the "tumor board" to discuss my case. Present at this meeting were my surgeon, radiation oncologist, neuro oncologist, pathologist and radiologists (people who looked at my tumor & read my MRI's). There's been quite a bit of discussion around my case so I'm told. Somehow my oncologists were left out of the loop with exactly what the pathologists were seeing (which apparently is still a mystery) and the concerns the rest of my team had for potential increased malignancy of my tumor. The oncologists are now on board with the whole chemo + radiation thing and believe that is the best route for me. Boo in the sense that I now have to do chemo but a little relieved as I've read that chemo actually helps the radiation work better and will hopefully give me a MUCH longer time to recurrence or what would be even better, no recurrence at all. Plus most of what I've read says that once a tumor comes back, regardless of grade, patients are often given the full spectrum of available treatments.

And just a quick side note on the radiation because I've had a lot of questions about it, it's not an injection. It's basically a very high tech x-ray beam that will be aimed directly at the tumor bed. Five days a week for six-ish weeks. I will have to have a special mask made that will be marked to ensure that the "beam" is directed at the same exact spot every time.

Things are a little complicated now because I'm trying to get seen up in Boston to start treatment there. My oncologists are actually recommending Mass General over Dana Farber so this week has been busy with setting up appointments, getting medical records, pathology, MRI's and actual pieces of my tumor sent up there. It's essentially starting over at high speed (minus the surgery part). The coordinators there are aware that I need to start treatment as soon as possible since it's already been 4 weeks since my surgery. They are working on getting me appointments for next week and I will have to have additional treatment planning appointments after that before being able to start. The doctors there will get up to speed on things and then give me their treatment recommendations which my Hopkins oncologist believes will be the same ones they gave me, but things could change once I get there though I don't anticipate anything major. I'll update more on their plan once I meet with them.

For now (when I'm not spending hours on hold with some doctors/medical records/insurance office) I'm trying to enjoy my last few days in Virginia for a while. I also got to spend some time in Chicago last weekend and had a fabulous time, thanks Anne & Alex for having me over! I went for a bike ride today, my first since surgery a month ago, 16 miles! It was slow going but felt great! It rained but that also meant it was about 20 degrees cooler out which made it much more bearable. I wish we had such nice trails in Massachusetts, makes getting out there on long rides a lot easier. While I'll miss being here, my apartment, roommate, friends and work, I will also enjoy getting to spend time in New England in the fall, by far the best time to be there.

Next update will probably be from Massachusetts, Happy Labor Day everyone!

1 comment:

  1. Erin, your journey is not an easy one, and certainly not one you or anyone would choose. You are in my thoughts every day, and I wish you strength and total healing... (((hug)))