The sky has darkened with impending, much needed rain, and I spill coffee on my favorite sweatshirt. Nestled in front of the TV in my most comfy sweats and Uggs, all I need is a nice campfire. I realized it’s been a while since I wrote, so I figured it was time to catch up. I hope you all are enjoying this spring, dodging tornados in the Midwest and heavy rain in the South. Be careful out there, Everyone!
I have been doing well lately, up to about 3 weeks ago. My breathing has become difficult, much more difficult, and we’re not quite sure why. I had a new round of scans at the end of April, and they looked pretty good. No new tumor growth, lymph nodes have mostly gone back to normal, though I was starting to amass more fluid in the pleura. Was that the reason? I began to drain every other day but the amounts weren’t earth-shattering. I went on oxygen 24/7, and that helped. Then it wasn’t helping. I contacted my palliative care group, and they fine-tuned some of my medications and doses. That has helped about 80% of the time, with the worst time always at night. In the dark, the boogey-man of SOB really raises its ugly head. When that happens, I either take a hit of liquid morphine sublingually, or some Ativan. Either one works to gork me out pretty completely. When I regain consciousness, it takes a good 30-60 minutes to get my wits about me. Once I do, I am doing pretty well as long as I do things slowly. Initially hanging in at 2 lpm of O2, now I need 4-6 lpm depending on what I’m doing. I’ve been in contact with City of Hope, and they said I’m not making things easy for them. They said I’m not following the rules (Have they met me?), so it’s difficult to make predictions. The first medication I was on, crizotinib, only lasted about 6 weeks when it was hoped it would be effective for 8-12 months. The trial medication I’ve been on at CoH had such a spectacular effect on my tumor, everyone was excited. Has it stopped working? That’s the question for the moment. If that’s the case, I’ll start on traditional chemo in short order. Insurance has approved more scans for this coming Thursday, so I’ll know more by the end of the week. Understandably disappointed, I know others have had just as dramatically wonderful results, but theirs have proven to be much longer lived.
On a positive front, in the battle to have this illness deemed work related, I had the City mandated QME exam. My experience in this exam was not a positive one, as the physician was very condescending, arrogant and rude. I came away with a feeling of failure, sure the doctor would rule against me. I learned last week that he in fact ruled in my favor, 100%. Of course, the City is rejecting his finding, so we move on to the next step, depositions. I’m scheduled to be deposed by the City at the end of June. My lawyer is optimistic about our chances, and says there are many eyes on this case. Hopefully, we’ll have a decision soon. We just need to get past the hoop-jumping…
The sky has darkened further, and the wind sets my chimes to ringing constantly and bright. The patio window is open so the breeze hits my face, chilling the tip of my nose. My cat comes out of her closet hideaway, yowling for attention. She enjoys watching the shapes move around on the TV screen, intent on the activity.
She’s now trying to shove the laptop away so she can curl up on my lap, so this update is about over.
I hope you all continue to do good things and take good care of each other. Always remember, I love you all.