It’s like I hit the reset button.
I knew when we walked into the cancer center it wasn’t good. My trial coordinator was on vacation and I was supposed to have her replacement. He never showed up.
There was a different energy around everyone. My appointment was at 2:30 and I wasn’t called in until almost an hour later. I had flashbacks to that day at Sloan when I was waiting for the bone biopsy results and was praying so hard for chemo for Christmas.
I asked if I should get injections first and they said no. That’s when I knew there wouldn’t be any injections.
Usually the nurse comes in and chats a bit but didn’t this time. I told rob I knew it wasn’t good, and that I saw the doctor coming in and writing on the exam table in my visions.
She came in, sat down for a moment, looked me in the eye and said the scans showed it was worse.
In the next breath she said that now was not the time to cry and she needed me to be clear and focused and listen.
Then she drew on the exam table.
She said I was probably on the placebo arm of the trial, which means I’ve only been on a hormonal suppressor since March, and that the Ibrance had been failing since January. She also said the questionable spots on the liver were clear and based on preliminary reports, it’s still all confined to the breast and lymph nodes, where the FDG uptake was higher.
I heard my friend Alycia in my head and heart at that moment and flashed to a conversation we had almost a year ago.
I looked at the doctor and asked could I truly possibly be oligometastatic, her eyes lit up, and she said yes.
Oligometastatic is a very very small subset of patients who have few distant metastasis and that’s it. Once you treat the primary sites, this subset is “cured”, a rarity in stage four world.
She drew her plan, and said she wants to treat me now as a lesser stage, which means very aggressive. A hard IV chemo cocktail, with the goal of rapidly shrinking the tumors, then surgery, then another M-Tor inhibitor oral chemo for a year or so, with the goal of being cured.
I asked what it it didn’t shrink the tumors and she said that she didn’t want to even discuss that option.
She was excited that despite not being on a chemo, the cancer didn’t spread. I think it proved to her I was oligometastatic.
Rob and I have done so much research. Chemo is poison. It destroys your entire body. Surgery is a huge trauma. Don’t ever do chemo.
Now we were being told that after a year and a half of being in a room on fire with no way out, a window just opened, but the escape ladder will burn me from the inside out.
I heard madame swoosh in my head.
Despite all we read and learned, I decided to go to the window. All this time I was told IV chemo would be my last line of treatment, but now?
It’s the lifeline to get out of the room.
I’ve done everything.
Prayed, organic, fasting, juicing, chaga, reiki, all of it.
And yet here I was, being told the same treatment I had prayed and prayed for when I was first diagnosed because it would have meant I wasnt stage four and could someday hear the words cure was now an option.
I was told I was stage four from the beginning, a rarity.
Then I was told I have this rare genetic issue, lucky me.
Then I was told I had complete remission, the fastest the oncologist ever had.
Then the appendix, which no one could believe happened after everything else.
Then it came back.
Then the trial.
So why not believe I am the rare one who is oligometastatic and can be cured?
Maybe I was meant for the detour of the past year and a half to get healthy and prepare for what was coming?
It’s not going to be pretty.
The side effects are horrifying. Neuropathy, nauseau, loss of taste, hearing and vision issues, and my hair will be gone in about two weeks.
The oncologist said I have been so strong, and I may tolerate it well. I asked about September, and she said going back to work could be possible, but she is glad that I am all hers for the summer.
Once a week I will sit on a chair for several hours and have taxol and carboplatin pushes into my veins. This will be for a few months, but she said she will know pretty quickly if it’s working since we both have a very good feel for the tumors.
When we left, she said I was making the right choice. And that she would pray. We’ve never seen her this focused, or excited. She truly believes she can get me to complete lifetime remission. I asked what she would do if I was a family member and she said this was it.
I believe her.
Her nurse said she had a former patient do the same thing and is still cancer free six years later.
Then we came home and told the kids.
We framed it in a very positive way. Quinn cried a little, maddie and Morgan got quiet, and I told them that maybe I’ll be the wise one from Doctor Strange for Halloween. We also sat down our summer son and told him we would love to have him stay. My plan is to stay as normal and routine as possible, and he wants to stay and help us.
My hairdresser has agreed to cut off all my hair when the time comes, and we may just do it at the beach at sunset. Wisps of my hair into the wind and water.
I ordered some head scarves from amazon and will go to a wig store this week.
I’m scared, but resolved and determined.
I want my children to know I did everything.
I want to know I did everything.
I am not going to Oregon, but will instead Skype. Rob and I had thoughts about going to Sedona.
It just won’t be this summer.
His mom and dad and my mom and dad are ready to help.
My brothers and jill and their spouses have all told us last night they are here for us.
My niece brennan texted love.
The people who have surrounded us with love the past year and a half have once again showed up.
The ones that show up in hard times are the ones you keep forever, and I’m so lucky to have so many.
I begin today.
This morning I take steroids and anti reaction meds and then take my kids for haircuts.
2:20 I sit in a chair in the hospital and begin.
I didn’t get Remission.
But I feel like I hit the reset button, and am doing what the original plan was but with a lot more faith, strength, good health and love strengthening me.
Please pray for Rob. This will be hard on him.
Please pray for our children.
Please pray for me.
May this window of opportunity be the window to a very long life.
In Jesus’s name, amen.
2 thoughts on “The reset button”
Praying for you and your family every step of the way!!
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Thanks for your story. I was just referred to your blog by a friend. My husband has stage IV esophageal cancer, metastasized to the brain; brain tumor was removed in Jan and he has been in chemo since. The tumor is stable; no worse, no better. He feels fine; the chemo has been comparatively mild in its effects. The future is completely uncertain.
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