The universe is trying to find my breaking point. I think it might be getting close… I must be living a “Truman Show” kind of life where the audiences see me being thrown obstacles big and small and seeing how I react: my MRI running an hour late and the longest amount of time in the tube I have ever spent (45 minutes). [Side note: Good call requesting Adele on my scratchy headphones – she has so many songs that she alone can cover the ridiculous amount of time I spend in the machine.] The following morning I head out to my “big news” oncology appointment and give 1.5 hours to go 13 miles from Seattle to Renton. However, there is an accident that closes I-5, so I exit and take the alternate route. Then a fender bender closes the ramp that I am already committed to trying to get back on the freeway South of the accident. We have all had those moments when each time you check maps, the minutes to your destination increases, not decreases. I arrive to the oncology appointment breathless and agitated (but Mom Torrens kept me sane by for talking me through the worst moments of the drive.)
Then you get the news where suddenly the traffic problems are no longer even a blip on life’s worries. The once “somewhat treatable, maybe 10-15 years, triple positive” metastatic breast cancer is now double negative… the final HER2 marker still unknown. We are no longer talking years… we could be talking months. Everything hangs on the HER2 marker, and regardless the double negative likely wipes away years of my life. Tim wipes away my tears in the car. The refrain of screaming “Fuck!!!! I don’t choose this!!!” repeats for about two minutes until I remember it will do no good other than letting my husband know how badly I want to fight this and reject it. Lunch in a local version of hooters where the wait staff wears leather and lace. You can’t make this shit up. I start making the next calls that will start my chemo, my radiation that will only ease pain but nothing will kill what is growing inside of me. The only thing radiated to oblivion will be the audacious plan I had recklessly hoped for myself: a new job in the sunshine with a progressive school district, a slower pace of life away from the I-5 corridor, three years spent away from my husband during the week but worth it for job satisfaction – besides, we have our whole lives in front of us….. Until we don’t. What do you do with that? How to put all the plans in reverse? What do you do now? What do I do? What do I do? What do I do? This question plays an endless loop and is answered by making the next appointment, hearing the next news, putting thoughts down on paper, picturing what makes me happy, trying to manipulate the shattered pieces of my life into some semblance of what we might recognize as a life. I am not being over dramatic, in fact some people think I am not being dramatic enough. But I am. On the inside. “What do I do?” my brain whispers until the myriad of pills that will help me sleep finally, finally stops the whisper. Every morning since the diagnosis, I wake and test my brain. Was it a bad dream? Every morning there is a similar answer, no, not a bad dream and the refrain begins again, “what do I do?” The audience watches in anticipation.
The news today was not as good as we would have liked. There is a bunch of medical information behind each of these statements, but this is just a “quick” update. Coming soon… A blog where I can share my journey for those who want to hear about it.
1. The cancer is metastatic breast cancer. But while my original breast cancer was a “triple positive” (which is good because you have three ways to shut the cancer down.) it has now morphed into at least a double negative… and I will find out the third strand (HER2) in a couple of days. That double negative reduces the projected lifespan considerably. The number is now “maybe 5” rather than “maybe 10-15”. That was hard to hear, but it is still better than months. And I will be seeking available trials at Cancer Care Alliance to get that number much higher!
2. My significant bone cancer is not in my leg (that is what happens when you talk to your doctor after being on fentanyl for liver biopsy.) Instead, the major points that are impacted are my left shoulder blade, left shoulder joint into the clavicle, the last rib on my left side, and left hip bone/pelvis. The shoulder joint is about 1/3 eaten away by the cancer and that is where they are concerned about the bone snapping spontaneously.
3. No new news on my liver, other than alcohol is pretty much off the table. Don’t want to damage it in any way.
4. Here is the ideal timeline of how treatment would play out:
Oct. 31st : Three appointments in Wenatchee – Oncologist, nurse coordinator and social worker, and radiation-oncologist (these appointments are made)
The following is what I hope will happen…
Week of Oct. 29th: Appointment with Wenatchee orthopedic surgeon who hopefully will say that surgery on shoulder can wait until after chemotherapy
Week of Nov. 2nd: Start radiation on shoulder and rib for palliative care for pain (possibly every week day for 10-15 days)
Week of Nov. 14th: Get Port put in
End of November – End of March: Series of chemo – IV chemo every 3 weeks for 6 sessions. Receive IV Herceptin 1x week for a year or more
End of March – Start daily chemo pill that has minimal side effects
May – surgery on shoulder
By summer be back to my old self: soaking up sunshine, bumming boat rides on the Columbia, playing Caddy for Tim golfing, and an Alaskan Cruise in July!
Is there a protocol of notification?
I know that going left to right you put the salad fork, dinner fork, plate…. what would Ms. Manners say?
Do you call the people you love the most first?
That line of “most” is like putting all the students in 6th grade with ADHD in the front row. Not possible.
Mom first? No, she will need people to talk to.
I hear you calling out – your husband has to be first!
But he is driving home from work. And I need to process and make it more real. Release some of the fear and tears that are wrestling in my eyes and throat making it impossible to breathe.
Love the most. My girls. My girls who I try to protect from my raw fear and emotions because… because why? They are strong. They can take it. They need to know the depth of my love for them. But you can’t call twins simultaneously.
Sarah…. So strong. Her words, “It will be okay, mom” become the echo in my head
Emma… So thoughtful. “What do you need? Do you need us to drive down tonight?”
Then my sister and mom, who will let the family know.
Then Tim… but that will remain off paper. Just between us.
When do you let people know the cancer is in the liver? Metastatic breast cancer currently has no cure. Friends, current work, past work… Facebook?
Do you wait for the biopsy? Oncology knows it is cancer, the biopsy will tell what kind, what treatment, what chemo… the doctor, “the life expectancy is measured not in decades or months but years.” Years are good. Years allow cures and additional treatments to be found by our brilliant scientists fussing with machines.
As the word gets out, the love that I always knew was there pours in. I find I am an endless vessel filling up with the love and it gives me the strength I need to keep the fear away.
So now you know. It’s back.