It’s been a few days. I’m fine.
I took a break from blogging to live life, and get my children ready for Camp Kesem.
It’s a camp many colleges have for children that have a parent with cancer. It’s amazing, and my kids are gone all week.
I finally Skyped with Donnie Yance from the Mederi Clinic. I’m going to share a lot, because there are some important things he told me that may benefit others.
Here is my post from today….
What a day.
I felt peace seeing my kids, and although hearing their voices tell me they are having a great time would be even better. There were no pictures posted from day three at Camp Kesem, but I’m ok. I’m so thankful that all of these college kids have given up a week of their summer to bring joy to children who have had too much sadness in their young lives. We need more people like these counselors.
I went into school and tackled my file cabinets. I organized all of my binders and have it pretty well set up. All I need to do now is label everything with kids names, learn what new curriculum we will be getting, and do bulletin boards. It sounds simple, but right there is about three days worth of work.
I came home and hung out with Joe. I was so nervous about the Skype call I had coming, so he hung out with me and we watched Game of Thrones. I had a stress headache so no going outside for some sun. Instead I sipped water and laughed whenever Joe got shocked at twists and turns.
Then it was time for the call.
I’m going to be honest. When I spoke with Donnie three weeks ago, death came back to my heart. I got scared I made a mistake with the chemo, that the cancer would come back, and that we were making wrong choices. I had pretty much decided that I would listen to what he has to say, but not add him to my team.
I invited my dad over in case Donnie had family history questions, as well as Maggie. She had the connections that got me to this point, and is brilliant. Whatever I wouldn’t be able to follow, I knew she would.
I decided to wear the reddish brown wig, “Amber”, for my own confidence. Then it was time.
I called him up on Skype and we had a video glitch at first. Then? I saw him. Right behind him?
A cross hanging on a wall.
The first ten minutes I was all nerves, we had some small talk, then he dove right in.
Man, he is brilliant.
Almost a savant.
He went over all my bloodwork, and explained it in very technical detail with lots of medical words. Had he been my first stop in the cancer world, I would have been overwhelmed. But because I’ve read many of his medical papers and journals, I kept up.
There was a lot of good news with those thirteen vials of blood he took. He said he was like Sherlock Holmes, and puts all the pieces of the puzzle together. That is when the feeling hit my gut, and it was my sign that he was going to be added to my team. Madison’s name in camp this week is Sherlock, and she has spent all summer reading every original book and watching the series.
The biggest thing he is working on is my fibrinogen. I’m at risk for clots with the level I am at, and he will work on it through his supplements. He went over my PH and it is low. THe ratio of one area of blood to another is at a good range, and my CBC is good. He discussed how the tumor makeup of HER2 was very high, 70%. That’s what shows how fast moving the cell division of the cancer is. Mine is very fast and aggressive. My heart dropped. However, he said that numbers over 15% respond better to chemo, and although mine is high, we should get a good response. He even said I could have complete response after nine sessions, and the tumors could completely go away. I had a crash course in bloodwork and tumor cell makeup. He even talked about a new drug in trial that looks really promising.
Donnie said again how toxic the chemo is, and liked the idea of the peas and blueberries. He said he can handle any neuropathy that would come my way anyway, and with his help, I shouldn’t get any.
We discussed the CARIS biopsy, and we’ve decided that we will have both biopsies done when surgery happens. He even thinks I may have such a remarkable response, there may not be any tumor left to remove. He discussed how surgery can be very taxing to the immune system and spur more metastasis, but said we will cross that bridge when we come to it. I was afraid he would be adamantly opposed to surgery, but he said either way he could support me.
He is very impressed with all the moves my oncologist is making. After hearing us explain how she is treating me as an individual and not cookie cutter, he said she sounds like a great fit. He would love to talk to her.
We talked about Dr Snuffleuffugus. I told him all of the ingredients, and he said that Snuffy has been doing an excellent job. Did you know I am drinking the actual antler of a deer every day? Yup. That’s one of the ingredients.
Thank you, Bambi.
I may name my new blonde wig in your honor.
He said to keep using Snuffy, and I felt relief. I love this Chinese man, and feel secure with him. I think he has grown to love me too.
We discussed how I left Sloan because I didnt feel any hope, and he said I have made every right choice. He even said that my decision to not do Xgeva every month and instead advocate for every three to four months was smart.
We discussed diet. He told me instead of eating sploosh, I’ll be adding a shake to my day. He wants me to eat more miso soup, kimchi, sauerkraut. He said eighty five percent plant based and fifteen percent good whole dairy and fish, with the dairy being a mixture of cow, goat and sheep. He said to simply eat as well as I can.
We discussed my weight, and he said the drugs and steroids have puffed me up and given me the water retention. We discussed next steps and drugs to possibly go to. We discussed how to address the cancer stem cells, so cancer doesn’t pop back up in a year. He doesn’t think the liver spots are malignant cancer spots. He said it’s probably benign.
He told me to exercise, and we discussed meditation. He said vagal tone breathing is very important as it stimulated the parasympathetic nerve for the immune system. Guess who has been teaching me that all along?
We discussed chaga mushroom. Guess who came into my life last year? The owners of chaga island, Debbie and Bridget. He loves that I am drinking it.
We discussed faith. He told me how important it is for people to reach the level of asking their purpose in life and then doing it… with love.
Love and faith.
Every time a drug, a therapy, an herb, or anything came up, he said he had written a paper on it, or done a study, or given a presentation.
He is brilliant.
Probably the most brilliant man I’ve met. Now I know why Martha Stewart loves him.
We talked for two hours, and he was going to write up an entire proposal for me. I didnt ask how much it will cost. I’ll figure it out when I get it. We are adding it to Snuffy‘ herbs, but my kids are smart and will get full scholarships to college anyway…. (I’m adding that to my prayers every day.)
As we said goodbye, Donnie told me he didn’t want to overwhelm me with research papers and journal articles and nutrition ideas and recipes, as it was our “first date”. I told him it was a great first date, and I even had my dad in the back seat listening in as a chaperone.
I had to make an appointment for a follow up in four weeks, and I spoke to his assistant, she didn’t have openings until January. I’m on a wait list and she said there should be a cancellation the week I need it.
When we finished and hung up, I cried.
I had peace and hope and clarity.
Rob feels the same.
Maggie does too.
My dad was maybe overwhelmed at all the technical talk, but said he supports adding Donnie to the team.
They left, and rob and I made dinner.
We sat on the back deck and ate with joe, had a glass of wine, looked at the stars, talked about the kids, his games, and rob schooled him on music. I said to Joe that I felt bad he had met us this summer instead of three summers ago when nights like this were the norm. He said he is glad he came to us this summer, learned a lot, had his eyes opened, and was happy.
I told him someday, he is going to help a lot of other people from what he learned this past month.
It was a beautiful night.
Robs parents stopped by and we filled them in on the meeting. I snapchatted my nieces and nephews. This is hard for them as well, and the easier and funnier I can make it, so they know I’m ok and get used to my shaved head, the better. Joe joined in and we laughed and laughed at the video filters.
Then we watched Game of Thrones.
Today I’ll go for a walk, clean and do laundry, then go to the grand opening of my friend Alli’s new business.
Tomorrow is chemo day.
I’m at peace.
Thank you, Jesus.