During the pandemic of 2020-2021, a group of women with whom I had attended Harvard Business School scheduled a weekly call at 4pm on Sundays. This was normal during the pandemic because people couldn't socialize in conventional ways, so Zoom became our unconventional connection. This group of 5 other women knew about my thought process regarding the prophylactic surgery. We also had a text group, and that's how I told them that I wasn't having the surgery because I was diagnosed. Two of them were planning to be at the now postponed bye-bye boobies party, and I didn't want to ask them to withhold the information from the other ones in our group.
Other than my first four and my family, these were the first friends I told. They would be beneficial in putting together my medical team, supportive of me, and articulate!
stephanie:
Oh my gosh Joelle I’m so sorry. You got this. We are here for you. The universe is weird and unfair and I can’t believe it but at the same time you’re healthy and I know that you caught this fast and you’ll tackle it furiously and successfully. sending love and prayers ❤️🩹
Julie:
Love you Joelle. I’m having a hard time stringing words together. I want you to be well. I want you to be safe. I want you to kick the shit out of this with chemo and immunotherapy. I know you know the drill - you helped me understand my dad’s cancer last year. We are here for you. A BFF is chief strategy officer for UCSF medical. Can she do anything at all to help? On the phone with her.
stephanie:
And forgive me, but how the fuck did they not find this before? Did it just appear and grow that fast?
Joelle:
Just get UCSF oncologist’s office to call me back. Which I think they will. And if there is another oncologist who knows Stage 2+ triple negative BRCA1 tumors - second opinion.
I received an incredibly compassionate call from Dr. Kent Adler on the evening of Day 1. He gave me comfort and confidence that even though I wanted to start treatment ASAP, I didn't need to start immediately, and my outcome would be better if the team had all the data they required about my tumor. One of the most incredible parts of being pitched the cancer curveball is that the people I found who are cancer professionals are intelligent, compassionate, caring individuals who made my life richer (and healthier).
Julie:
Ok, on it
Joelle:
And yes Steph - it grew that fast. Wasn’t on the MRI in June. Wasn’t in the pathology in October. Triple negative (I’ve been told NOT to Google it) is the motherfucker of breast cancers. But we caught it early and will do everything in my power to eradicate it from my body.
Julie:
Where were you going to get surgery?
Joelle:
CPMC
Faith:
Joelle. You Will get through this. We are the village to support you. Also to extent you are comfortable as you go through this I can share with Jan. Given Genentech’s focus there may be additional resources to access.
Joelle:
Please feel free to share
But triple negative means their amazing drug isn’t suitable
Faith:
Yes. Jan just told me that. The first question he asked was is it HER positive
Julie:
Joelle, sent detailed email to my bff. She is going to see what breast specific excellent oncologist in UCSF system can get you in ASAP. More to come.
I am fortunate that multiple people in my life were connected to UCSF and abundantly willing to leverage their connections to expedite my roller coaster from the drop to the loop of treatment. Later, during my treatment, another friend ran into an issue with her husband and a diagnosis, and I was able to pay it forward for her.
Joelle Kaufman:
Thank you!
Julie:
For you, the world 🌎
Carol:
Noooo, just seeing this now Joelle how can this be!? The timing is uncanny. Sending you positive thoughts and want to support you through this in any way so just holler. There is so much love for you in this community. 💕 🙏
In case it's helpful I have two a few friends who raved about their ucsf docs, I can try to get names
stephanie:
I know Merisa Piper at UCSF - specializes in reconstructive breast surgery at UCSF, I bet she has oncology referrals
(Dr. Merisa Piper did become my reconstructive breast surgeon and is an artist, an empath, and overall amazing human).
Laurette:
Wow! just seeing this now. I’m so sorry Joelle. You have been so on top of this possibility and being so proactive. I’m sending piles of positive energy and I know you are going to kick this thing in no time flat. Love
Joelle:
I think Julie has UCSF covered - thank you!
Julie:
Yes, I’m on UCSF. I’ll update.
Joelle, I have an update.
The ucsf med concierge office will contact you tomorrow to schedule an appt w/ either:
Kent Adler (same doctor as Harriett recommended)
Michelle Melisko
Jo Chien (same doctor as Harriett recommended)
Until this group text, I had yet to learn Julie, who lives in NY, was deeply connected at UCSF. Julie and I had a relatively recent friendship, and the lengths to which she went for me were touching and shocking. One of the gifts of my cancer experience was that Julie jumped right on, took my hand, and said, let's smash this motherfucker.
One of the things about scheduling with a National Cancer Institute hospital is that they book you when they have a spot - they don't call to find out if it works for you. On the initial drop and twist of the roller coaster, that's tolerable - I wanted information and to see the best doctors I could as fast as possible. Once I settled onto the continuous loop of treatment, another roller coaster control was to exert more influence over appointment scheduling.
You can decide based on avail but they will move people to get you in. You can decide if you want a breast speciality or not.
My friend asked to speak to you as soon as she can. She’ll contact you tomorrow for sure.
She has your number and all the deets you provided.
If you want to discuss the oncologists, I can get more details on each of them. Michelle is a breast specialist
Jo is usually booked out for months.
Let’s see what scheduling magic the concierge can do.
We’ve got you.
stephanie:
Wishing you strength and some serenity today. I know you are probably incredibly focused on figuring out treatment. Keep that brilliant mind focused on problem solving. Once you have that figured out, we should take you to a “break stuff room” and you can let go of all that frustration. I am happy to organize, it’s cathartic
Fuck cancer, best cancer break stuff session
Carol:
I would be more than happy to come help break things too 😉
We still need to go to the break room - but the love, energy and support I was already receiving from my friends were a boost as I approached the plate to face more curveballs.
Continue the story…
