Progression of Disease?

 I look back on my life and see so many blessings. They've come mostly in the form of people. Sure, I could dwell on the earthly dad disappointments, especially on Father's Day weekend that has given me some melancholy days in the past. 

We just had dinner with dear friends who drove all the way to us after an exceptionally busy day of graduations and family celebrations up in Denver. They are older than us and represent "The MOO Patio" to me, meaning the patio attached to our previous church in Southern California. There were people, like these two, who had all their own stuff to deal with yet showed me so much love and support that "The Patio" became the main reason I attended that church for many years. I've thanked the pastors for the steady ship they created there - where we raised our boys and sought God - and found him ready to respond with love - always! 

Today was a tough day. The grandkids came over at my request to make planned Father's Day gifts. I just feel like I'm walking through concrete and I am exhausted. I need naps a lot. I have trouble keeping up with the most meager plans I make. I look back over my life and I have felt like this a lot through the years. Do my mitochondria work? I used to think it was the Epstein Barr Virus. Well - I test negative for that now so, back to the drawing board. 

I went in for labs and to meet with one of the APPs (Advanced Patient Practitioners) who seem to be Physican's Assistants a couple days ago. They are concerned about the occasional night sweats and the growing lymph nodes. They wanted me to move up my next PET Scan as it looks like "progression of disease." I was ready to OK that but she left the room for a few minutes and I had time to think and pray. The answer I got ... "Don't do anything in fear." The PET Scan I had scheduled was only 2 weeks out and I've had all these symptoms in the past. I decided to keep it as scheduled. I already don't like the exposure of every 2 months - I don't want to do them even more frequently. She also tested my urine out of curiosity and found I have a raging UTI with none of the usual symptoms. On an antibiotic I go. And, I started a new med to reduce the Uric Acid in my blood that could harm my kidneys. Stacking meds - oh joy. I pray that God protects me and choose to trust. 

"Progression of Disease" is not what I want to hear. I have an itchy rash right now. I have no idea what would be next if the Clinical Trial doesn't work out. They will probably want me to start CHEOP - again. I am tempted to go to my regular oncologist and ask if we can retry Dubilisib, Romedepsin, or the other targeted drug now that I think I know better how to manage the nausea. Who knows. 


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