When the rubber meets the road

Yesterday was oncology day; the possibly pivotal day when she looked at Friday's PET scan and we decide what to do next. I suspect things are worse; I have a troubling sensation that lymph nodes are pushing on my windpipe. The sensation is worse sometimes that others. Sometimes I can still just go about my life as I have for so long. Other times it deeply rattles me.  My dermatologist of 4 years has pleaded with me to go to MD Anderson where she took her son who has now beaten Hodgkins Lymphoma. I met her when he was first diagnosed 4 years ago. We cried together and I gave her the Chris Beat Cancer and Radical Remission info. He apparently really took to the integrative info as they also sought out what they thought was the best conventional treatment. 3 years ago we cried together as she told me he was really in trouble because all the horrible chemo had not been working. 2 years ago, she told me they were trying Keytruda as a "Hail Mary." And when I met with her a few ...

I've gradually increased Fenben from 250mg twice daily for a few days, to 375, to 500, to 750. When I reached 875 with the goal of getting to 1000mg twice daily, I had increasing diarrhea and a yesterday a terrible headache and nausea so I backed down to 750 mg twice daily. I take Tudco with it, which is supposed to help the liver and Serrapeptase at night when I wake up so that it is on an empty stomach. This is supposed to help the body clear out dead cells and break down biofilms. I was taking 2, but backed down to 1 when I had what may be the Herz reaction. I have a new large, hard lymph node on the left side of my neck. It reminds me of what I am dealing with, which is probably good. It's motivating me.  Tomorrow I have a consultation with Zahara Sita, who is something of an expert on this protocol and naturally healing cancer in general.  Some good news for me to remember:  -The new big lymph node will give me a way to show the new protocol is working.  - I've ...

I tried the Metformin and, yuk! I felt like I had the flu all the time, terrible heartburn no matter what I ate, and hip pain, especially while trying to sleep. I finally stopped it after about a month and the symptoms went away pretty quickly. I finally got the Revlamid, after a lot of trouble with insurance and pharmacies. Unfortunately I got an itchy rash after only a few days and my doctor told me to go off the Revlamid for about a week, hoping the rash would subside, and then start the medication slowly again. Even having been off the medication for a few days, I was still having to take Benadryl to sleep without such incredible itch. I'm a bit concerned about the rash and some night sweats. After waiting about 10 days, I tried the Revlamid again but the rash came back quickly. Well, that's off the table. My mindset is a problem right now. I feel powerless over my health. It's like progression of the disease is inevitable and I'll end up having to do CHOEP, which h...

Today was oncology day. No big deal, really, but the day I go to Memorial Hospital North on Briargate to check in with Dr. Mellott, the oncologist. I refuse to call her "my oncologist." I need to review things to know details of medications, clinical trials, updated information about this lymphoma and what's going on in the world of research and data. It inevitably makes me weepy and today it was like I was transported back 6 years to that vulnerable fearful place. I feel like I need to be smart and assertive while still relying on people who know things I don't. It hits something deep in me and wears me down quickly.  I think it's the fear of having to jump into CHOEP that scares me the most. For good or bad, I believe that would be the beginning of the end of my general health. Just about everything I have done makes me feel horrible, even though I am so grateful for the way the targetted medications have helped with symptoms like the swollen tonsils and other l...

One of the most uncomfortable feelings I have about this health journey is the image I have of throwing spaghetti at the wall as a way of describing what I have done to deal with what's going on in my body. I value the scientific method but have been completely unable to apply it to this situation. As I've shared here many times, I burned out of it all after the first couple years and have become quite lazy. I know how blessed I am that this disease has been so stable. I don't really expect to go into remission. That is sad to admit because I know how important our beliefs are in our health. But it's the truth. So I have been living in a bit of a limbo state. I still have this cancer that the doctors are terrified to just leave alone but they still don't have a treatment that really works most of the time. And the treatment can cause new problems that very often take the lives of patients.  I talk about having faith that God is in control of it all. I do have that f...

 Howdy. It sure has been awhile!  I'm not quite sure when it happened but I let go of the reins awhile back and have just been living life and it has been a fun ride lately.  Since my last post, it has felt like a whirlwind with continuing doctors and chiro appointments for monitoring being overshadowed by lots of fun! We hosted another wonderful family reunion with my side this time, have been enjoying having Mason and Lara in Colorado!, having fun with our friends from CA who bought a 2nd home here, meeting with my Spiritual Director via phone and therapist near Denver, and going to Al-anon meetings/getting to know new people from there. We meet with our beloved long-term group for our BEMA discipleship Bible Study via zoom most Friday nights. We have the grandkids most Wednesdays and often do something with Cam and Hailey and kiddos another day of the week. Nolan and Lexie have been exceptionally busy but we get to see them too, thankfully. I still can't believe we are...

I took the Duvilisib for several weeks and was so excited that I didn't seem to have any bad side effects. I didn't go back to read what I wrote in the last blog, before starting it, but I had become aware that the FDA actually removed it from the list of approved meds for T-Cell Lymphomas because it has a very high rate of serious, often fatal, side effects. I felt it was my only known next step, though, so I decided to try it. Unfortunately I broke out in a very concerning rash. Itchy, blotchy, sometimes oozing rash.  I got in to see my oncologist and she confirmed that I needed to stop it right away, go back on the higher dose of Prednisone, and hope the rash subsided. It didn't go fully away - especially areas that get sun like the top of my foot. Those areas are dark, patchy spots that don't seem to heal. Interestingly, the oncologist (Dr. Mellott) said she thought I could go back on the Duvilisib, once the rash subsided. My reading doesn't agree with that. As ...