Nothing as fun as a puzzled oncologist

The facts: 

Angioimmunoblastic t-cell lymphoma or Follicular T-cell lymphoma and Peripheral T-cell lymphoma (different pathologists have diagnosed me with all 3 of these) are all very aggressive and rare and hard to treat. They relapse often after chemotherapy and a stem cell transplant. They are "nothing to play around with." 

I was diagnosed with AITL after a needle biopsy by an ENT about 2 months ago.

A biopsy of lymph nodes from 2 areas were then said to be normal. But, once retested, they came up with this t-cell lymphoma, stage 3. 

The PET Scan confirmed it. 

City of Hope urged us to start 6 rounds of chemo over the next 18 weeks asap and then do a stem cell transplant that scares me to death. 

In the meantime, I started on a tonic of roots and herbs from the Horsey Biomedical Clinic in Mexico and worked to understand other options. I put together a regimen that is not easy but is a heck of a lot better than chemo. 

I have been reading about people with this disease, including a closed Facebook group. All I could see in their stories were the multiple relapses and years and years ahead of chemo, transplants, relapses, drugs, and watching for problems. 

Just a few weeks ago, I thought my lymph nodes were growing and that chemo was inevitable. Also, in a strange turn of events, the doctor I am working with who writes books on the alternatives and helped convince me that conventional chemo is dangerous and ineffective, told me she though I needed to list to City of Hope. 

A couple weeks ago, I went to schedule the surgery to get a port installed in my chest and the 1st chemo but the doctor decided he wanted another scan because he couldn't feel lymph nodes. 

I am now spending 20 - 30 hours each week at the Cancer Center and taking more supplements, teas, tonics, herbs, enemas, saunas, ... than I could have ever imagined. 

Last week I drove to City of Hope to pick up the slides of my biopsies and the pathology reports, to send to a doctor at Yale that actually studies these rare lymphomas. In the pathology report, I was shocked to read that the disease was doubling every 35 days. They didn't tell me that. Now I am glad! 

We did the CT Scan Friday. That afternoon I had horrible abdominal pains and kidney stone pain (I've had it before) so Andy and I spent the evening in ER. There, the ER doc was able to tell us that the radiologist things the lymph nodes are smaller than they were 6 weeks ago. 

So, when you are trying alternative ways to deal with cancer, it seems the best thing you can hear from your oncologist is, "I just don't understand what is going on." Andy told him that I am using all sorts of alternative therapies and that I am going to a different cancer center. He nodded but could not have been more disinterested in what we are doing. It's like the stories I have read over and over were just replayed in that room. 

But, he reminded me. This is serious and "we can't afford to make mistakes with this one." 

So - once again, my body has shown us what to do...for today. No, I am not swinging from the chandeliers. I am grateful to all who have been praying for me, encouraging me in a multitude of ways, and who are relieved with me today. 

A few things I'm learning. 

1) It is OK to know what to do - just for today. I don't have to have the whole plan to be OK with it. 2) I don't have to understand everything I am doing and it is OK to be real, even about my doubts. But, I keep walking forward in faith, trusting that the right doors are opening and closing, by God's grace. 

3) Watch for God's hand in things - especially when they are frustrating. The Center Center runs horribly yet it makes us all be much more engaged and proactive in our own healing. We can't trust someone else to take care of us so we need to get in the drivers' seat. Or, when you get a weird kidney thing that resolves the minute you are in the hospital bed but you meet a woman who needed to hear about the books you've been reading and you (I) needed to hear that this was her 1st day back after battling ovarian cancer that had spread to the liver and to learn about the website (inspire.com) that helped her so much. Or, when an ER doctor 1st tells you things look better and your spirit soars. But then he comes in 10 minutes later and dashes your hopes by telling you there is a new, concerning, lymph node under your clavicle. If everything was resolving with no issues, that would take no faith at all. So, even though that is a mystery and kind of irritating that he seems to have worried me for nothing, I am grateful for how God is working. 

Now I have a serious request. I found out a dear friend has breast cancer today. She hasn't told her family in over 2 weeks because of births, graduations, others who are sick in her family. She is terrified and is more alone than I have felt for 1 second in the last couple months. Please please pray for her and her mother who is also going through tests after a suspicious breast MRI too. We will just can her "M" for now. She's a dear dear person and I would be comforted too, knowing she has you praying for her as you have for me! Thanks.