It’s been a hell of a couple of weeks, both physically and emotionally. I started my new oral chemo, Xeloda and Tykerb, on June 5 and it is officially kicking my ass. The nausea and vomiting that has been dogging me since early this year has amped up as an expected side effect of these new drugs, as has the need to spend way too much time in the bathroom. Plus a new one – lip blisters! In short, I’m a hot mess.
Dr. K has reduced the dose of Xeloda to try and combat some of this, plus added some more symptom relief meds. We’ll see how that works and if we need to tweak the formula a bit more. We are headed out of town tomorrow for a much anticipated trip to Chicago, so it would be great if my body started to cooperate.
Thanks to the generosity of a family member (who shall remain nameless as they value their privacy, but who we appreciate and love so much!), we told Cigna to go fly a kite and paid for my denied brain MRI out of pocket. The results were mixed; there were no brand new metastases detected, but the scan did show that many spots previously treated with gamma knife are growing larger again, much like the spot I had laser ablated in March. This growth is likely due to radiation necrosis, but can cause swelling and other cerebral havoc depending on location and size.
Because of my symptoms and the location of one of these much enlarged spots near the blood brain barrier, Dr. Chiang referred me to Dr. Becker, a neuro-oncologist at Yale, to talk about the possibility of leptomeningeal metastases (LM). We met with him Monday and liked him a lot – he seems very methodical, knowledgeable, and empathetic – a good addition to the “brain trust” we already have on the case. Once we return from our trip, I will be going in for a lumbar puncture (spinal tap) to check my CNS fluid for signs of cancer cells. If I do have LM, there are a couple of different drug treatment options that the team will have to discuss, but we will cross that bridge if we come to it. Mentally, we are putting that whole scenario on hold until we get back from our trip.
There were a few bright spots this week. On Wednesday evening, we went to Hartford to see Joe Walsh plus Tom Petty & The Heartbreakers, thanks to a wish grant from “Do it for the Love” – an awesome charity that sets up live concert experiences for people dealing with a terminal illness. We had front row seats with a stellar view and were happy to have the company of Cas & Spencer at what turned out to be an incredible concert. I won’t bore non-fans with endless video clips but you can check out my Instagram or Tim’s Facebook if you’d like to have a listen.
Now, it’s on to Chicago & Milwaukee to visit family and friends and see Hamilton (squeeeeeee!). Can’t wait to see some old friends and show Tim around my home state. Please keep us in your thoughts and prayers for a safe and healthy trip.