“Curiouser and curiouser”. Its been a long time since I’ve felt able to write. I left Chautauqua a week or so early because I could feel my health deteriorating at an increasing speed and wanted to get back to my doctor in Shreveport. It broke my heart to leave early but, in retrospect, it was the right thing to do. I have been quite ill for a long time since I made it back home.
But, first things first. The remainder of the Summer in Chautauqua after my previous post was wonderful. Lots of great concerts. So much support from my friends. I was gradually amping up my ibuprofen dosage but things were manageable. I was able to meet up with old family friends and thank them for their help when my father was very ill. During the worst of my illness I would recall all that happened this Summer and it would sustain me through the worst of my symptoms. However, I knew I was gradually slipping down the rabbit hole. So Isaac, Eliot and I quickly packed up the van and made the two day road trip back home.
From the time of my return till now the cancer came back full bore. In fact it grew a little more than when I was diagnosed a year ago. All my symptoms also returned. The pain, the fevers, the nausea all combined to make it impossible to get more than a mouthful or two of food. My stomach was clenched like a fist. For six weeks I lay on the couch and stared at the ceiling willing myself to just hang on a few moments more and get through it.
Dr. Patel here in Shreveport summed things up. I had had no effective treatment for four months. It’s no wonder things were bad. I have lost thirteen pounds and am just now starting to be able to eat consistently. The immunotherapy was ineffective and I am now on a different chemo drug. I had my second dose two weeks ago. The fevers are gone and, just like Alice, I seem to have made a soft landing after floating down the rabbit hole.
In some ways I was not surprised by my reaction after coming home. I never really thought about what would happen after the Summer. It seemed the last thing I would do in my life. Once Summer was over it would be about a year after my diagnosis which is about all most people get with my type of cancer. Kristina says I’m like a cat and this is the second of my nine lives. Maybe l’m like the Cheshire Cat and I will disappear slowly leaving just my smile behind?
I’m still quite weak and going out to a grocery store is enough to tire me out. But, I am starting to get out, visit with friends, gain a little pleasure from being alive. Only time will tell how effective my latest treatment is and how long it will last. We were having serious conversations amongst my family about whether or not it was time for hospice. Dr. Patel urged me not to give up and held out some hope with this new treatment. How odd that circumstances can change so quickly. But, that is life in Wonderland (Cancerland?)
For all of you who have reached out to see how I am doing and didn’t receive a reply, please forgive me. I be will getting back to you soon. Hopefully I’ll have plenty of time to do it. After all, it’s very hard to stay in touch when you’re slowly floating down a rabbit hole.