by Jeni Birr
CHAPTER 18
In the new year I ran into a brand new set of issues. As I had feared, I was now back at zero dollars spent as far as my insurance company was concerned. My itching was getting so bad it was keeping me up at night. I wanted to give the cream and foam ample time to do their thing before scheduling another dermatologist appointment though.
On Wednesday, January 15, 2014, Phil, the nurse/administrative assistant from Dr. Junck’s office was supposed to have sent in the prescription for my sixth cycle of chemo. When I still hadn’t received a call from Curascripts to schedule delivery by Friday, I called him back and oops! He hadn’t sent it yet, but he promised he would send it before leaving for the day. The next day I called Curascripts and yes, they had received it, but it was still “processing.” I called back later and turned out it was ready to schedule but was going to cost me $1300! Monday morning I called Phil back and he gave me some numbers to some assistance programs. He also took it upon himself to send the prescription to the hospital pharmacy, which wanted to charge me $1400, and would require payment up front, and I still don’t think my insurance company would have allowed me to get it there, as they had not in the past. I didn’t know all this at the time though and when I called Curascripts back that night, they told me they could not send it to me because the hospital pharmacy already had an approved claim on it. I needed to call them and have them reverse the claim, but of course, they were already closed. Why wouldn’t they be?
I called them first thing in the morning the next day and asked them to reverse the claim, but also explained that maybe it got sent to them in the process of the hospital social worker trying to help me. The pharmacist said she would check with the social worker and get back to me in forty five minutes, which of course, she did not. Several hours later I called the hospital pharmacy back and just had them reverse the claim so Curascripts could actually ship it to me, but it still took them another twenty four hours of “processing” before they could schedule delivery. It finally showed up the following Friday, the 24th of January.
This entire week my rashes were getting worse. It had spread across my chest, my left shin, and then my right ankle. The abs rash had gone away, thankfully, but the rest were terrible. I had a third dermatologist appointment on January 27. At this one she prescribed an antibiotic and now a third topical cream. She was still convinced it was folliculitis, despite some suggestions I had come up with, but what do I know? I’m not a doctor, or dermatologist or anything. I have a Fine Art Degree I’ve never used. The next day I started my sixth cycle, which went generally unnoticeable, aside from some marked fatigue, but I blame the Benadryl for that.
Fortunately, I was approved for both assistance programs I was referred to, the ACT Program, and the Musella Foundation for Brain Tumor Research, which helped me cover the ridiculous co-pays for my Temodar. I had a fourth dermatologist appointment on February 19, where she took yet another little biopsy and told me she would call me on Friday when the results came back. She did not. I called Monday to check the results and see if I should stay on the anti-biotic, but she was on vacation. Apparently my results came back negative for both the things she was testing for, but they swore they’d have her call me when she returned. I called two more times the next week, but never got in touch with the doctor. Miraculously however, the itching and rash finally went away. Hallelujah!! After eight treacherous months, it just went away one day towards the end of February.
The following month I decided to volunteer at the zoo the following summer because I was getting stir-crazy-cabin-feverish. We had the snowiest winter in Michigan history, and I was trapped inside the house for days as Eric was back to work full time now, had been for months, and it was way too cold out to be walking or riding my bike anywhere. I had an orientation on March 22, 2014 which Eric dropped me off at. I was referred by my grandmother on my dad’s side as she had volunteered there a few years. I decided to be a “Zoo Ambassador” which basically stands at the front gate welcoming guests to the zoo or walks around and answers questions. The uniform consists of khaki’s and a red zoo shirt. I detest khaki’s. They don’t look good on any woman. Women, am I wrong? I tried on twenty different pairs before just picking the least offensive pair that still didn’t fit right.
April 2, 2014, Eric took the day off of work to celebrate my one year anniversary. We got a great deal on some great seats at the Detroit Tigers baseball game, which we won. I painted a nose and whiskers on my face, and video-bombed the couple in front of us when they were up on the big screen. We had a great time and I felt very much alive and healthy.
CHAPTER 19
This, my lovelies, brings us to current day. I am still on medical disability, but hoping to return to work when I’m finished with my cycles in August. I’m planning on volunteering at the zoo for most of the summer. I’ve been working on this book for the last few months so that I’d have a project to get me through the winter. My doctors tell me I’m doing wonderfully, and all my family and friends are amazed by my positive attitude. The doctors like to remind me however, not to get my hopes up, that the survival rate is extremely low. I’ve just passed my one year anniversary. I am convinced, however, that I have more to do. I don’t know what that is yet, but I know it’s out there to be discovered. It’s like an adventure. A treasure hunt, if you will. One day I will figure out the pot of gold at the end of my rainbow. Until then, I will keep making art and music and riding my bike around the neighborhoods, and loving my husband and my dog and my friends and family, who have shown me nothing but love and support. I really don’t think I’d have even made it this far without their love and support.
Let us hope and pray I write a sequel to this little novella.
This is my story to date.
This is not the end of my story.
To be continued…
