I was watching the radical remission new episode released last night, and all these experts said to name the emotion, and face it.
I dont even think there is a strong enough word actually, which makes it hard to name.
We waited most of the day for my oncologist to call. I gave up around 5 pm, and then the phone rang.
Having a discussion like we had over the phone was obviously not ideal. Body language, facial expression, and simply physical presence matters. All we had was a voice.
And what the voice said truly scared me.
She started off by saying she absolutely understands my frustration that yet another chemo has failed me. She said she is frustrated too. Eight lines of hard chemo in three years isn’t easy. She said the new course she is suggesting is similar to Adriomycin, which is the one I had in September and made me lose all my hair and eyebrows and eyelashes, but it isn’t as cardiotoxic.
I brought up my concern about the new factor in the equation… the coronavirus. She said it is absolutely a factor. We don’t know how bad it is going to get, and we couldn’t guarantee that whatever chemo schedule I go on would be kept. She said that she did see some patients yesterday, but they were only patients getting chemo that had to come that day. She also said that having my immune system take another big hit would be dangerous during the pandemic.
As if my life hadn’t been in danger the past three and a half years, let’s add a worldwide deadly virus worthy of its own movie.
I told her all about the annie Appleseed conference. I told her how we met with my herbalist, he did an exam, and knew then that the doxil wasn’t working. He also knew my liver was in trouble. I also told her that it’s one thing to hear about people who have been helped by him, but we actually met them. And these are people we saw the year before who were on chemo, he told them to stop this last year, and this year at the conference they were still doing well. I told her how he is honest, and I’ve sent people to him that did not want to do chemo and he was adamant that they do chemo. I told her about my concern about my new liver pain and how it hurts to take a deep breath. Rob told her how he helped me examine my breast and explained the new lump he felt.
We told her how Donnie suggested adding letrozole for now, and she said it would not work because of the ESGR1 mutation. We are all in agreement that we are hoping the biopsy tells us something new so we can try to come up with a plan that is based on science instead of guessing what might work.
For the first time ever…
She said she didn’t know what to do.
She said that she couldn’t guarantee that her drugs would work better than his herbs.
She said that now is the time to try the herbs, because we just don’t know if treatment would be continuous, the virus is dangerous to someone like me, and the biopsy is important.
She sounded defeated.
Oh, how I wish I could have seen her face, but perhaps that wouldn’t have been good either.
She wants me to have tests run today as the herbs should come today or tomorrow. She wants a baseline, and also wants to check how much the tumor markers and liver markers changed in five days. She then wants my blood taken every two weeks to keep an eye on my liver. We said if the herbs work as we hope, and my tumor markers come down, then I’ll be in good shape in three months for whatever treatment she comes up with by then. She said if the herbs work, I would stay on them. That is huge for a researcher and oncologist to say. I hope they work and she can study me. So the labs will be important.
But I cannot come to hospital for labs to be done. She wants me to stay far away from the hospital, because she said is it a major command center. Which means I am going to labcorp locally, and not for a port draw. It has to be done in my arm or hand, which is always hard because of my veins and the abuse they have taken over the years. Pray for me at 11:30. We will have to figure out where to have a port flush in four to five weeks. Maybe their Southampton center, if they are allowing patients at all. This is all so surreal.
We will keep an eye on the labs, monitor, watch the liver pain, and switch course if it gets dire.
Then I emailed my herbalist. I conveyed the conversation we had. I also sent him the picture of the two of us from Florida.
“Beautiful picture for wonderful memory.
I am glad your oncologist is in agreement with your decision.Now we have to do our homework. I do not know how effective my herbs will be in helping you to slow down the progression of your cancer. I plan to go forward cautiously and using non toxic herbs that cannot harm your liver and you in general. When your liver enzymes are normal again, then I will have more degrees of freedom to help you. My conservative thinking is that if we can stop the progression of your cancer, and you are physically more healthy,then you will have a good opportunity to receive a new treatment should it become available.”
He is unsure if he can slow down the progression of the cancer. That sentence made me want to throw up. I’ll know within a week or so based on the liver pain. I’ve become very intuitive to my body.
So now…it is done.
All of the team has been contacted and have had discussions. The decision has been made, and we are in agreement.
It is all in my herbalists hands.
And we are all in God’s hands.
I did my best from crying all night. I feel the fear I felt when first told I had weeks or months. Rob has been wearing his rosary over his shirt and praying. Add on the pandemic, my kids home all the time and anxious about school and the virus and their mom, praying robs business makes it through, and waiting to hear about how I’m supposed to teach kindergarten virtually…
How is all of this even happening?
But God threw me a lifeline.
Another episode of Radical Remission from Hay House was released last night, and it featured Valencia Robinson.
We have become Facebook friends and met in Florida and got to hug each other. This episode was about positive emotions. It was just what I needed at that moment, even though I kept crying while rob and I watched it. Everyone should watch this series. The hope and miracles of these people seem unbelievable…but I’ve met them.
I know it’s all possible.
Anything is possible.
My plan now is to go hardcore. My oncologist said I have to. She said definitely diet and exercise. My diet went off the rails during the hard chemo and steroids. I’m back. No sugar, hard fasting, upping veggies and fruit. I am only eating between 12-6. Salads and soups and juice. We set up a gym downstairs. I’m going light because of the liver pain now, but hope to increase. I’ll be meditating. Limiting the news. Watching funny movies or tv shows. Breathing.
Today I’ll head to labcorp and get the baseline labs done. I’m praying his herbs come today so we can start.
I had some bright spots yesterday. I’ll end my post with the gratitude moments.
I got in my car and drove to the giving room. I talked to Paula and Heidi through the front door and over six feet away. I also got juices, fully masked and gloved.
I dropped off juices to my sister. She stood on her porch and I stood in the driveway and tried to not cry. She supports my decision and that means so much. I also danced in her front yard for my nieces and we all laughed and blew kisses.
I dropped off juices to my mom. I stood on the porch and stayed in the house and the second I saw her I burst into tears. Which is hard when wearing a surgical mask and gloves and can’t touch your face. I needed to see her for my own soul. My heart is with all of my friends whose loved ones are in nursing homes now and they can’t see them.
Maddie and the kids worked with her new video camera. The start of Maddie’s career has begun.
I heard from my Leila’s aunt. Her family continues to follow me and send me messages. I wear her necklace all the time, and in Florida, some people wanted to touch it as they knew it was from her. She is still touching lives.
I sent a love note and a picture of me to my kindergarten students. Their parents are sending me pictures of them and I’m sharing the pictures with the whole class. Adults are quarantined but are connected with texting and social media. My students are five and their whole world has changed. Their teacher, their friends. If I can keep them connected, I will. Today I’m going to try and call my families, especially the ones I haven’t heard from. Those are the ones I’m most worried about.
I sat and started to read a new book I got. Untamed by Glennon Doyle. So far, it’s amazing. It’s short quick chapters which is good for my chemo brain. I sat on the couch in the basement and rob worked on the other side of the room and we listened to music.
I sipped on Chaga tea. It was delicious.
I put on my Christmas lights last night, we never took them down. It’s been a hard few months and just haven’t had time. It made me happy to see them, so I just might leave them up and add more light to this dark time.
I’m doing positive affirmations too. I’ll be ending my posts with them.
I am blessed.
I am grateful.
I am powerful.
I am healthy.
I am healed.
I am loved.
I am exactly where I am meant to be.
I am a child of God, and my father loves me.
In Jesus’s name, amen.