I think it was a little more than 3 weeks ago since I posted and of course, stuff has been happening. I was leaving quest in Bethel when I believed the curb was a small step, but it was a large step and I started the slow motion fall to the ground. I ended up on all fours like a missionary with my papers and purse flying all over the parking lot. Lee jumps out of the car and starts telling me to get up, but I was trying to figure out if anything was broken. It wasn't! I'm a strong little beotch! The nice lady from the hair salon had run out to help up us. My hands and knees were pretty swollen and bruised. After we got home and I was able to get cleaned up, I noticed that each hand had red bloody marks. Hmmm, stigmata? I checked my feet and nothing. So close. I did hurt my back in my tumble. Some days are better than others.
Then a week later my doctor called and told me that my CMV was high. That is a virus that lies dormant in about 40% of the population, but guess what? That's right, I got the full blown virus. He said that it feels like a really bad flu. I feel like I always do. We came to the conclusion that I always feel kind of crappy. The doctor put me on a very strong anti-viral that will lower my blood counts, making me even more tired. Yippee Skippy!! Oh and the med will bother my stomach. Just get rid of this damn virus!
Next visit was my first appointment with a new Danbury oncologist. My Boston doctor, Lee and myself were hopeful that we could be a team dynamic. What a joke! Danbury doctor just wanted to up charge me. She tried to make me an appointment for a mammo, but I told her no because I already have a doctor. She wanted me to have my blood work done there and I said no, because they aren't on the same system as quest and Boston. She had them take blood anyway and never called me with any results. She was telling me that my infusions (if I needed anymore) had to be approved through insurance even though I told her it was already approved. She said I would need a port put in my chest. No I don't and if the time comes that I need one, that hell hole won't be doing it. Then on Friday morning I get a call from the Danbury office to set up my infusion. What infusion? I never heard that my IgG levels were still low. Someone was trying to pull the wool over my eyes. I don't think they realize that this isn't my first rodeo. With all the oncologists I've seen over the years, I've never dealt with such a dismissive doctor. BTW, my Boston doctor called me later that day and said I didn't need another infusion yet. I may in a month or so. We'll see what happens. The search is on for another oncologist, but NOT at Danbury hospital. Now I know why all the good doctors left. Their slogan..MONEY OVER PATIENT CARE. Disgusting!
I did see a specialist for the GVHD in my eyes at Yale and we are trying different things. The newest thing is doxycycline. I never knew, but it's also an anti-inflammatory. My stomach isn't too happy with this addition, but if it helps, I don't mind getting nauseous a couple times a day. I like this doctor and the people at Yale are very nice. One of my old doctors works at Yale, so I'm going to email him to see if he has a recommendation for an oncologist there. He's only doing breast cancer now.
On a brighter note...I went back to comedy! Dr Mac gave me the okay to perform in person. That's something I wasn't sure I would ever do again. The performance is June 26th at the tent at the Ridgefield Playhouse so save the date! This group is tinkle your panties funny! More details to follow.
Peace out Peeps 😷 Vax it up people!
