Weekly Update

I know it is has been a little while since I posted. The week after chemo seems to always be a trying week. Last week was particularly challenging. 

It started Monday when I had to go to the hospital for an echocardiogram with strain. When calling the hospital, they said my mom could not go in with me due to COVID so she had to wait in the parking garage, which is crazy. She dropped me off at the door. By the time I walked to Central Registration, which was not that far, I was out of breath. Then I had walk to where my procedure was, which was quite the meandering walk. I was completely out of breath then. When she came to get me for my procedure, I was still catching my breath. She noticed and we walked slow. She was very kind. We started the exam. It took almost two hours. I had to get an IV....they could not use the port. The phlebotomist was great, even though he had to go into a painful place, he got it in one stick. 

On Wednesday, I had an appointment with a local oncologist. The purpose of this meeting was to be able to find someone who could do my weekly blood draw through the port and if I need a transfusion, could do it without admitting me to the hospital. We got to the appointment and I was given about 15 pages of paperwork to fill out. First, why could I not have done this online prior to coming? Second, they never really seem to read it so why do we fill it out? Anyway.....as I was filling it out, I got frustrated and put my head back and hit it on the chair. Shortly after that the office person came out and said, "You are an established patient." I told her that I did not remember that but it was probably in 2018 when I had a strange fever and they sent me to oncologist as an option. I only went went once. They took blood and told me I did not have cancer and sent me on my way. I do not consider that being established. In all likelihood, they missed my current cancer because they did so little to say I did not have cancer - just sayin' they should be happy I am not challenging them on that. Then they did my vitals and took me to a room, where mom and I waited about an hour to see the doctor. I was starting to get a headache at this point. He finally came in. He started by challenging me on the fact that I was an established patient and he did not know that when my GP made the referral. I reiterated why I had gone there and was only there once. Then he questioned why I was at Mayo and why I was talking to Moffitt. He told me that he would be happy to do my chemo treatments there. I am sure he would as he would be able to bill a fortune. Then he asked why I was there. I explained my reason. He began to tell me that no he would not use my port to draw blood. He told me insurance would not pay for that weekly. I said, no problem I will pay for it. He said that would be $50, I said OK. Then he said it was dangerous because it could cause infections. We asked him about doing a finger stick, which is what they did for two years as a child when I was I going through chemo. He explained he has been in this field for 20 years (keep in mind I wanted to say well I have been fighting cancer for 40 years but I didn't) and he had never heard of that as if we were making it up. He said it multiple times - he never heard of it. Then he explained why his blood test is so good because it costs $10 and he gets 20 readings. So now he has admitted to me how much he is ripping off insurance companies and his patients. He told me his nurse was good and he never had complaints about blood draws. Then when asked about blood transfusions, he said, "Oh no. You would be admitted to the hospital and by the way, you won't see me because I do not go to the hospital." He had a valid reason for not going to the hospital due to a family member's vulnerabilities. Although, if he was that concerned then he should switch to telemedicine because being around us sick people is no good anymore. At that point, I was done. I do not need someone to challenge me on everything and not in any way be helpful to me or supportive. I did let his nurse do my blood count that day since I was already there. She was good; although I gave her a hint of where she might be successful. Then she put me back in the patient room. It seemed like forever. My headache was getting worse and my frustration level was rising. She eventually came back in and said everything was fine. I asked for a copy of my report because I had no trust of their definition of fine. She printed me one. Then said if I gave her 3 minutes she could give me a better report. After 5 minutes, I thanked her but told her I had to go. My headache was killing me. It was at the base of my neck and making me sick. My frustration was exponentially growing. Needless to say, when we walked out the door, I told my mom I never planned to return to that office ever again. 

My headache did not go away so I began taking aspirin, which I had been avoiding but the pain was bad. Then it began spreading to my neck. At this point, I could tell this wasn't a headache, my pericarditis was back. I had stopped my meds around chemo after last time but apparently I stopped them too long. I got back on the meds immediately. In addition to my neck pain, I had a pain under the left breastbone this time. By Sunday, that pain expanded to my entire chest. It is now only painful when I take deep breaths, which is an improvement. While I have a high pain tolerance, this pericarditis when it is at its worse is some of the worst pain I have ever experienced so I look forward to it subsiding. I am also frustrated because I reached out to my new cardiologist oncologist to explain what was happening, what I thought it was, and what I was doing to help it. It was sent Monday at 8:20 AM. The message was read but no response. That is so different than my oncologist, who always gets back to me right away during the work week.

In good news, my cats have been quite snugly. Marmalade has been sleeping in the recliner with me.

A new box came into the house so the cats now have a new tunnel, which Flapjack loves along with the packing paper. He put them both together so he could play with everything.

Yesterday, Pancake decided she could not get close enough to me. She stayed in my lap four hours. I started to wonder if this was like the cats in the assist living homes that visit people on their last days but thankfully I woke up this morning so she just must of needed mommy love.

Hopefully that the rest of the week is uneventful!

For tonight . . . I'm just sayin' XOXO