TY for the Prayers. It looks like another reprieve!

Hello dear ones. 

I am so aware of the honor it is when someone spends precious time with our savior, praying for me! Thank you so very much. And, thank you, Andrea, for calling out the troops when it seemed as if my body was showing signs of the lymphoma "taking off," as the doctors have predicted all along. 

Just a couple weeks ago, I thought my body was showing me it was time to listen to the oncologist and jump into a very toxic treatment called CHOEP. This has been strongly (and sometimes aggressively) recommended since diagnosis with a form of peripheral t-cell lymphoma 7 years ago. I am not at all against conventional, western medicine. It has just not made sense to me to jump into treatment with a very low success rate, when the treatment in itself causes significant life and health changes. And I have learned there are other options, albeit those come with time and discovery and faith. I can complain pretty good about the day to day - thinking about this illness and wondering if I'm doing the right things. And....since moving to Colorado, I have had so little self-discipline in doing the things that can help a body deal with cancer... But I have been generally healthy, feeling good, and living a very full life while those with my same diagnosis have most often been dealing with multiple protocols over time, each of which change quality of life quickly and often permanently. 

I have tried 3 targeted drugs over the years, one of which helped shrink adenoids and tonsils that were making speaking and swallowing hard. But they each made me feel terrible so I could not continue them. One gave me a rash that could actually be fatal. These options are very different from cytotoxic chemotherapy that we are all so familiar with, however, and hold hope for a lot of people to have more time with stable disease. 

That "standard of care" treatment boasts something between 18% and 30% five-year survival rate. Because of social media, I know dozens of people who go the conventional route right away, with nothing more than a swollen lymph node, which is completely normal for them to do. Most do chemo and many get into remission. Then they are led to do a bone marrow transplant. Many relapse and do a new chemo regimen to try to get into remission again. Then they often do the 2nd type of bone marrow transplant. Many relapse again. There is often a message on our group chat that they have passed of kidney or other organ failure somewhere along the line. The average life expectancy is 19 - 30 months from diagnosis. I may or may not be right, but I often think that number is from when a person's body begins to have to deal with the damaging treatments. 

I've had at least 3 times now, when I was certain it was time to throw up the white flag and jump into the standard of care. Most recently I had a terrible rash that can be a symptom of the lymphoma. The lymph nodes on the side of my neck became visibly inflamed and very painful. I got in to see the oncologist and she, my hubby, and I agreed it was time. She wanted to put me in the hospital because she is worried about Tumor Lysis Syndrome the first round of chemo, as well as other reactions I've had to the targeted drugs. But she was going out of town and we decided I should get new scans, labs, and biopsies to make sure this hasn't morphed into a different lymphoma. We were surprised that the labs and scan didn't look that bad.

I see a D.O. in Irvine (virtually now), who monitors my "other health." I also go to her center for IVs of High Dose Vitamin C and Mistletoe. Both of these are used worldwide to help people fight cancer. She had ordered labs months ago that I had done for our appointment last week. Those labs showed the Epstein Barr Virus is rampant in my body. This virus is involved with lymphomas. Also, the hs-crp number was 67. It should be under 3. This indicates serious inflammation or infection or cancer in the body. I sent these labs to my oncologist and something very interesting happened. I feel I need to share this experience with people. She called me - demonstrably angry and annoyed. She is usually very friendly and patient. I had touched a nerve. I believe she thinks I am just hunting out doctors who will tell me what I want to hear. She repeated on that call that she has made her recommendation and she "can speak to no other options." 

I also went to my dermatologist to try to get some relief for the raised, itchy, miserable rash that comes up every afternoon and makes for sleepless overnights. She and I have an interesting 4 year history as her son was diagnosed with lymphoma about the time I started going to her. We have shared much info which has helped both me and her son. Anyhow, she biopsied my skin and called me just yesterday morning. It was the piece of the puzzle I needed for clarity. The skin is from a virus, probably the Epstein Barr Virus - not the lymphoma as the oncologist is assuming. I sat back in my car, thinking about how last week I was supposed to be in the hospital but "the system" slowed everything down to what felt like an annoying standstill. 

I thought about the other times I thought it was time to jump into treatment, only for God to very clearly block it. 

I have no idea what the future holds. I have met people who were so sick right away with this that they didn't have any choices. I don't know why God has me where he does. I do know I have learned to live much more in the moment, in faith, that God is in control and life isn't about running around proving my worth, planning for control and security, and trying to cover the bases in life. 

I just know that I am grateful that a woman assured me once that my body would tell me what to do and that I can change course as needed. Those words took away so much of the angst I once dealt with. 

Also, I have learned in my life that medical specialists are very focused on their speciality and it is rare to find one that thinks about the whole body and general, vibrant health. That is our job. And it's OK for me to guard this one-and-only body God has given me and to use what I can find out and, yes, "feel" is right for me. That has been a tough one. I love science and the scientific method. I have a masters of science degree in my field and have team taught statistics classes. I have the highest respect for the disciplines and people who go into the most rigorous fields of math and science. But we have to think for ourselves and sometimes it is OK to wait a bit. That is really all I've done...wait a bit for direction. And it seems I've gotten that same message yet again. 

Sorry this got to be so long. Thank you thank you thank you for the prayers and care!!! 

Merry Christmas! Joy to the World!!!!!