Seattle, Home and an Ommaya Reservoir
Seattle’s weather was quite lovely for our visit, of course it was super lovely on the day that we raced to appointments (stuck inside, looking outside at the sunshine through windows). I have no idea how it was conceived of booking appointments at hospitals all over Seattle 2 hours apart (of course I realized quite how far as we rode white knuckled in the back of an Uber car hoping to make it to the next one “in...
It’s a Pig
I guess I should be relieved that there were cancer cells in my cerebral spinal fluid, especially after my previous post. In reality I am – it would have been frustrating to wait for them to do another one and keep doing them until it finally showed up. At the same time it is so emotional to know I have leptomeningeal metastases, also called leptomeningeal carcinamatosis. If you had asked me when I first found out that I was...
Let’s Call a Pig a Pig
I think we are reaching a point of mental exhaustion that is just… blah. Queen of getting the rare stuff is at it again. Kadcyla makes me super tired. It kicks in the worst on Monday after a Friday infusion. We went camping right after I got home from my infusion Friday. We were out on Saturday riding 4-wheelers,, Mike on his and I was out on Ziplodicus. I was worried about the RV with the dogs in it because something set off...
Reviews, Scans and Pokes?
I heard back from my oncologist. I guess they had discussed the result on my MRI, but I hadn’t mentioned in my appointment that my upper left leg has a numb area – which I mentioned on my call. I explained I hadn’t brought it up because I am usually told things I bring up aren’t related, I guess this one matters (which I learned a little after reading some more about leptomeningeal metasases). Numb spots in...
Don’t Panic
After my MRI appointment I sent a message to my radiological oncologist requesting a copy of the final MRI report and never heard back, so Friday I finally emailed my oncologist requesting the report. Tuesday the final report wasn’t in, and my radiological oncologist told me she would tell my doctor about our discussion and her review of my scans. Most of it matched the review, I had the same spots, some grew about a millimeter,...
Pink Houses in Key West
When I signed up for Little Pink Houses of Hope I didn’t really have high HOPES that I would get accepted. They had said that there were more than 1,000 applicants for the Key West trip I was selected for, and I was somehow selected. Yay! Unfortunately the trip was just a week after our long planned trip to Lake Powell, so Mike taking that much work off wasn’t a great idea. I told the team that Mike was unable to come and...