It’s never easy.
I got up yesterday, took kids to the eye doctor, then went to robs office. Quinn has also started to have a nervous blinking tick, and now we will work on coping skills. The mom never just gets cancer, the whole family does..
We finished the paperwork for the camp and my heart broke a little when Quinn said in a letter that he knew he was going to the camp because his mom has cancer, and that he was happy to be around other kids who knew what he was going through.
I never wanted that for my kids, but then again, no one does.
We came home and I rested. Jill came over with the girls and I actually went outside and sat in the pool. I’ve developed a fear of doing anything since I started chemo. “Is this ok?” But I sat in the pool and breathed.
Quinn got picked up by friends to go play a little and I went to lay down.
The phone rang.
I saw the number was from Oregon.
Which is where I had just sent my scans and updated new protocol so Donnie Yance could get an update. We had planned on flying there for our consultation, but now with the treatment we are doing a Skype session. He is incredibly brilliant, and its a miracle he not only accepted my case, but moved my consult from October to July 24.
I thought his liaison was calling to simply say she got the fax.
I was wrong.
Instead she said he needed to speak to me and to please hold.
The voice I’ve heard in many videos got on the line.
He started to ask a lot of questions quickly. Did the tumor get rebiopsied? What was the alk phos level? He explained that the cancer is smart and could have already switched cellularly, and could have flipped from positive to negative. That the taxol is a very strong chemo, and if it has flipped, it may not be effective, and in fact, may make it stronger and harder to treat when it comes back, and that we need to address the root cause of the cancer, see what is driving it. He wants me to get a very specific and expensive biopsy done ASAP, as well as about twelve or so blood tests. He told me to ask my oncologist for these tests so we can see if this treatment plan will even work. That right now this is almost like a palliative care plan and without knowing the exact makeup of the tumors, it’s like going in blind and guessing this will work.
There I was, home alone, speaking to an obviously brilliant man, thinking “Holy shit. I’ve already started treatment, my hair is short and will fall out in a week, and this may not even be right?”
He said he has a trial going right now with Ohio state for stage four breast cancer, as well a just received a grant to do a study on thirty five patients of his who are stage four patients 15+ years out from diagnosis. He said he would be willing to discuss this all with my doctor. He told me to email her first and ask for these tests.
I said what do I do if she says no?
He said he will work with me wherever I am, will support my entire body and system through the hard treatments, but just wants the biggest picture with the most information possible to begin to treat this, and no matter what, he will support me. He said again how taxol is a serious chemo that will destroy my immune system, but did say the once a week will be more gentle. Silver lining I guess.
I asked him I am supposed to go sit in a chair on Friday for six hours now and get round two? He said that’s ok. Keep on this plan and hopefully by July 24 we will have more information.
We can adjust our sails if need be.
Meanwhile I’m like… what just happened?
He kept talking about all of this medical and cellular terminology and said he didn’t want to overwhelm me. I was overwhelmed, wished rob was with me, but was glad we had done so much research because this kindergarten teacher kept up with this man who has made his life work studying cancer, and breast cancer in specific. He knew his stuff. He wasn’t talking big language to impress, he was sincere.
He ended by saying that no matter what, we all just do the best we can, and that’s when the miracles happen.
He said he was already praying for me and holding me in love.
I thanked him and cried.
Then he was gone, his liasion came on the phone and dictated all of the tests I needed to ask my oncologist for asap. It’s not easy composing an email for a doctor asking for a bunch of tests without sounding like you are questioning everything. But there is no room for mistake, or ego, when trying to do everything possible to save your life.
I called rob and filled him in, then my parents. Then my Maggie, who sent me to dr Snuffleuffugus as well as Donnie. God has sent me these people for reasons and at times that only He knows the reason.
Quinn came home and swam with friends in the pool, and I sat with their mom who has been such a good friend in shock about the conversation I just had. This story of oligometastatic miracle I kept telling myself sort of imploded. My ears were ringing and I was trying to decide if it was from the summer flu/cold, chemo, or shock of the past two hours… or week.
Rob came home, and we sat outside by the fire when the kids went to bed. He looked at my PETMRI results and I’m glad I havent. They sound scary. The cancer has almost doubled in the breast. There is still a liver lesion but no FDG uptake. Something by my pelvis but no FDG uptake. He said he emailed my oncologist again to make sure that now that the final report is in that she still feels this is the right path.
She said yes.
NowI wait to see if she responds to my email last night and agrees to the biopsy and other blood tests. I’m not excited at all about a possible biopsy, as it was like a horror show and the lidocaine didn’t work, but Donnie said I could do a fine needle instead of a core needle, which is thinner. I’m also nervous to see if the cancer has mutated. What if we find out that this treatment which I’ve already started isn’t the right one?
Rob said that we will adjust and go to the one that will, and be grateful I didnt go through months of it. And if it is the right path, then we move forward with more confidence.
And once again, I am adrift in sea.
This is so hard and so scary.
As I sat by the pool with my friend, she said that when I get tired, others will fight for me. Just show up and be held.
Donnie Yance is a brilliant mind who is now fighting for me. My oncologist will hopefully think that it is wonderful I am adding a new mind to our think tank and continue to do the work to save my life hand in hand, and maybe together they come up with the miracle not only for me but for everyone.
Just show up and be held.
Just show up.
So today I am going to work on getting back to the miracle mindset I had yesterday morning before the phone call, while waiting to see if I get a response about my requests.
Once again I went to bed asking Rob, “How did this become my life, with my kids going to cancer camp and me talking to specialists about cancer and trying to increase my outcome survival?”
Please pray today that my doctor agrees to work hand in hand with Donnie. That whatever path I need to go on is found quickly. That none of this is being done in vain, and it all works so I can live to see many more fireworks and celebrate my own Independence Day from Cancer for years to come.
It’s never easy.
But man, it’s worth it.
In Jesus’s name, amen.
PS. I’m adding lyrics to a song one of my secret nurses sent me. I got it at the moment I sat by the pool and my friend was telling me about a speech where a sportscaster said when you get too tired to fight, just show up and let others fight for you.
Just show up and be held…counting crowns.
“So when you’re on your knees and answers seem so far away
You’re not alone, stop holding on and just be held”
It’s a good day to finish the lifeshocks book by sophie sabbage.
Because I’m in the middle of a big one…
Your world’s not falling apart, it’s falling into place
I’m on the throne, stop holding on and just be held
Just be held, just be held”