Home Sweet Home

 Hi there! 

Yesterday we pulled into our driveway and I felt myself let out a huge sigh of relief. It had been nearly 6 weeks since I'd been home. What a summer. As we drove from True North in Santa Rosa Friday and made our way through smoky California to my sister's new home in Prescott Valley, AZ, the realization was renewed of how huge our country is. And I had lots of time to think. I was tired and not feeling well and Andy could tell. There is some disappointment that I don't feel better after a 14 day water fast and re-feeding. Some good news: in only a few days of eating no animal products at all and cutting way down on salt, oil, and sugar, Andy is reporting that he felt differently enough that he is very motivated to eat much more plant focused. He watched some of the videos and met some of the people there; he's drunk the cool-aid. 

After a 24 hour visit with my sister, her hubby, and my dear pal who came to stay overnight with us, we were on the road again to Santa Fe, NM where we spent the night. I decided it's time to start Prednisone again to get some relief. I see the oncologist (Dr. Mellott) in Colorado Springs Sept. 11 and have a phone consultation with Dr. Shustov from Seattle Sept. 14 so I have time to do a round of Prednisone and be off of it for about a week before seeing them. I like that because it gives us all a clearer picture of my symptoms. I need to decide if I just want to try Romedepsin by itself next like we had planned before, which is much like the Belinostat in terms of scheduling. Or, do I want to jump into the clinical trial which gives me that drug plus the other as I've detailed before. I dread the new biopsies and the frequent PET scans required for that. Who knows, there may be another option that has come up; in fact, some people in the T-cell lymphoma facebook group have had success with the CAR-T treatment that has only been for B-cell Lymphomas in the past.  I feel a dread for the whole thing - resorting to that world is like stepping onto a sinking ship to me, hoping you get done what needs to be done before the ship goes under. That is a terrible way to think about it and I will be working on changing my paradigm if I go that direction. 

After leaving my sister's to drive to Santa Fe for the night, not feeling well with very little energy, I realized I am headed home again to something of a turning point. This is hard for me to say but I got to do some things this summer that feel something like closure as I now turn my attention back to what I may need to face treatment-wise. We took some chances in traveling and seeing loved ones and I'm so grateful we did, but it's time to face the giant again. The oncologist in Colorado Springs asked me the last time I saw her, "Why don't you just do the CHOEP and transplant and go for the possible resolution to this?" I reminded her of the very slim chances of that working without relapse and told her she could correct me if I'm wrong but that my belief is that the cytotoxic chemo regimen she is referring to is, "the beginning of the decline of general health." She nodded in a conciliatory way and we moved on. In her world, she has to keep her eyes on dealing with the cancer; her world is not about health and vitality. 

I have an appointment with Dr. Frankl, the MD internist who works with cannabis Thursday. I am hoping he can help me get onto a good regimen there. It has actually gotten harder to find good medical help in this area in Colorado since the legalization of cannabis for all. Prices are higher and the medical people aren't as needed here anymore so many of the credible people have faded away. I am going to start taking in apricot seeds (B-17/Laetrile), which I never have before. Andy and I are committed to the fitness stuff we learned and signed up for at True North with Dr. Sheraze. I have taken the last few days off work and we are seeing the kids tomorrow for Andy's bday. The Prednisone is kicking in so I am not fighting the pain as much and am hoping I have the energy to be able to work full-time and put all the health stuff in place. The diet piece feels easy right now; I don't feel like a purist in any area but feel I know what I need to do day by day to eat healthy and avoid things that hurt my body. 

I don't sugar-coat much when I sit down to write these. If we met on the street, and you asked how I'm doing, I would say in all honesty that I'm doing fine and you may comment, as so many do, how good I look. I appreciate the general health I've enjoyed. I've had the chance to live a pretty great life this past 3 1/2 years since hearing those words, "you have a rare and aggressive form of cancer and your best bet it to destroy your health to try to beat it back." I have been sweetly led step-by-step to where I am, always suspecting there is much I need to learn along the way and quietly hoping that I am indeed learning it. I love the Bible verse, "Being confident of this very thing, that He who has begun a good work in you will complete it until the day of Jesus Christ." Phil 1:6. God has shown us that he is in this whole process and I trust that he is teaching me and leading me and that I don't need to fear. My biggest "job" is to keep my eyes on him, not on the symptoms in my body or the doctors or the statistics or anything else...abide in him. All else is working out in his time and perfect ways. 

Now, refocused on that, maybe I can go back to bed. Love and peace to you and yours!!!