Here we go again
Here we go again, that feeling of being kicked in the gut, but this time I was told I was going to die… 3-6 months was the prognosis.
It was time to call in reinforcements. Once my husband and I were able to get our heads wrapped around what we were told, we told all the kids, mine and his. His kids took it all in stride, of course they love me, were concerned but they live thousands of miles away and I never really mothered them.
My kids on the other hand took it totally different. Rob, my oldest son, who lives with his wife and daughter in England, booked and flight and came as soon as he could get coverage for his restaurant.
Chris, my second born, had a melt down. He hid very well. At some point, I saw dozens of FUCK CANCER memes on his Facebook, they were all posted the same day. That is when I knew. Chris’s melt down was confirmed later at his celebration of life, when some of his closest friends told me how hard he took it. They told me of how often he talked about me and how much he loved me. He was always the strong one when he was with me and never let on.
Andrea, my daughter, who is a theatrical entertainer on cruse ships, immediately request a two week compassionate leave and came home as soon as her ship was back at home port.
My foster son, Raf, also took time off and drove down from the Carolina’s where he lives with his wife and two children.
New Steps in the Dance
As soon as my daughter arrived she wasted no time… She started making calls and talking to who ever would listen, she definitely inherited my tenacity. Between the efforts of my daughter and my husband, it was not long and I had two appoints for 2nd and 3rd opinions. The first was at Emory in Atlanta Ga and the second was at Shands in Gainesville Fl
Summing it up
First stop Emory- Winship cancer center
I went to my first appointment at Emory. My appointment was originally scheduled to be with Dr. Lonial but at some point they changed it to Dr. Kaufman. The long and short of it was, they had nothing much to offer beside a trial and referred me back to Moffit where the same trial was being conducted.
On our way back from Atlanta, I received a call from Moffit wanting me to make an appointment for the following Tuesday. I explained that I could not do that because I was scheduled to see a doctor at Shands, so they scheduled the appointment for Thursday.
Next on the list Shands
Mean while, I went to Shands on Feb 7. This was the day that I met the most amazing doctor to date, Dr Jan Moreb. Not only did he come in on his non-clinic day to see me, he gave me his cell phone number and said call or text any time. Amazing…absolutely amazing. He spent two hours with me asking questions and taking notes. Questions were so detailed that he wanted to know right down to my step children and my interaction with them. He offered three different treatment options, went over each one. He told us his preference and answered questions I had’t even thought to ask. When we left, he gave me a big hug, introduced us to Nikki, his bone marrow transplant coordinator. Nikki proceeded to take us on a tour and tell us what were could expect during the whole procedure.
By the time we left we were very comfortable with both Dr. Moreb, the Shands staff and the whole procedure.
Last stop Moffitt
So more out of courtesy more than anything else, we went to the follow up appointment at Moffitt. In construction you typically get multiple bids. When a bid is lower than that of the preferred subcontractor you use, we often give what we call a last look to see what else our sub can offer. In this case I did not hold out for much, as Moffitt had already told me they recommended no more treatment and I had 3-6 months to live, which by the way I had already used up one month of.
So here we go… As expected, Moffitt referred back to the recommendation from Emory regarding the drug trial. The doctor promptly told us, I did not qualify. The reason, because my liver enzymes were way to high. Adding insult to injury, they also told me I was not a candidate for a stem cell transplant. Reading back over some notes, the day I was going up to Shands to check in (more on this later), the nurse from Moffitt called and asked if I had made a decision about the treatment with DCEP. I thought to myself when did this come up… there was no discussion that I remember. I explained to the nurse that we had chosen to do follow-up/further treatment with Shands
… a polite way of saying YOUR FIRED!
Until next time…