When the rubber meets the road

 I'm having a miserable night. In general, I've been able to take a bath with baking soda, oatmeal bath, lavender, and coconut oil, take a topping 75mg of the prescription antihistamine, a glass of wine, and go to sleep. Tonight was different. The rash is worse and the stinging itch just won't let me sleep. I am tired of thinking about this. The rash is typical of the EBV rash, according to pictures I find online. Sometimes the rash is related to the use of antibiotics for EBV, but I got the rash before starting Keflex and this class of antibiotic is supposed to be less likely to give the rash anyways. I don't know if I should try Lomatium but Jane Barlow thinks so. I don't know if I should restart the Fenben protocol. No one answered me on the Fb site about rashes they've experienced. Do I try Ivermectin?  I'm afraid to do any of this because this night I thought I may have to go to the ER, the red, raised rash got so bad and has been so uncomfortable.  Whe...

I was nervous about seeing the oncologist today. But I woke up early, thinking about how long since I've don'e any real research about what's going on in the world of T-Cell Lymphoma research. I started looking and found there are some very recent clinical trials and I found a meta-analysis from November of this year, looking at several published research articles about what is going on in the world of actual treatment of AITL. It kinda felt good to use that part of my brain again. Some of the best info I found led me to look at Memorial Sloan Kettering in NY, because of some principle investigators:  Impact of Epstein-Barr Virus on Peripheral T-Cell Lymphoma Not Otherwise Specified and Angioimmunoblastic T-Cell Lymphoma. Controversies in the Treatment of Peripheral T-cell Lymphoma. Hemasphere. 2020 Sep Practical Treatment Approach for Angioimmunoblastic T-Cell Lymphoma Alison J. Moskowitz, MD 1 1: Falchi L, Ma H, Klein S, Lue JK, Montanari F, Marchi E, Deng C, Kim HA, Rada...

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 ...

So I thought we knew what we had to do. Then the scans and labs seemed less scary than expected. Then labs from Dr. Raleigh, DO at Restoration Healthcare came back. HS-crp 67! She said I should be in bed. When she had covid with those kind of numbers, she thought she was dying and called her mom to say goodbye. Am I just so used to feeling bad that I don't notice? Normal is under 3. RBC and WBC counts high. Homocysteine high. And EBV seems to be raging. We wondered together if the idea of an infection in the heart from the port is possible. She wants me to take Keflex and get an intra esophageal echo to rule out heart veg. I didn't notice the high EBV numbers til we got off the zoom call. Of course I didn't hear back on the portal so I just started the antibiotic and we shall see. She wants labs redrawn to see if the hs-crp is getting better or worse. (which I did) So I sent these lab results to the oncologist with pictures of the rash and a plea for help. I also told her t...

Friday afternoon I was so miserable that I made a call to the oncologist's office at 4pm. I explained to the receptionist that I am a patient of Dr. Mellott's, on something of a "watch and wait," and that I have new and worsening symptoms that I need help with. She explained that Dr. Mellott would be out of town this week but that she would call her to see if she could do something. I was a bit amazed by the effort she put in for me. It makes me emotional to think about. They arranged for this incredibly busy doctor with over 1000 patients to come in early Monday morning, before boarding a plane.  By Monday, I realized it was very clear that the doctors may have known something who have said over and over,      "When this thing takes off..."     "This is not the type you want to have..."     "Wait, but not TOO long..." The rash is so strange. It comes and goes - mostly worse in the afternoon and best in the morning. The itch is incredible...

 There have been several times, documented in this blog, when I thought I was at the point where I had to enter cytotoxic chemotherapy because, from the beginning, doctors have told me that is my only chance. They call this incurable, but a small percentage of people do beat it for long periods of time by getting into remission with very harsh and damaging chemo and then have the stem cell/bone marrow transplant. I've met people with long term disabilities from the treatment. Many of them had no choice because they were so sick. Others jumped into treatment with nothing but a swollen lymphnode. I know I have been fortunate to have all this time during which I have been able to do just about anything I want. In a way, I have been disappointed when I felt ready to "get after it" but my body has shown me (to the surprise of my doctors) that it wasn't "taking off" the way Dr. Haverkos and Dr. Nadamane predicted it would. I have also been relieved, of course, to ...