Approach to the Curveball - Communication with the Dugout
You control what to say, to who and when...sort of
Three items on my ever-growing list were completed. The diagnosis was confirmed, and I didn't know when more information would be available. I really wanted oncologist referrals. My sister's close friend was able to help. I messaged Dr. Harriet on Facebook, and she called - offering compassion and recommending referrals. Remember, Dr. Harriet is a radiologist specializing in detecting breast cancer. Every week, she discovered three tumors that the patient had not palpated. She knew lots of breast oncologists. Everyone Harriet recommended was affiliated with UCSF. I wanted a National Cancer Institute Center - and UCSF had a new campus very convenient to my home - the stars were aligning towards UCSF. I called the offices she recommended and left messages that I was newly diagnosed. Dr. Harriet Borofsky suggested you; I'd like to see you this week.
Joelle (to Jessica):
You can tell Regina and Karin. Right now, it looks likely that I’ll have 5-6 months of chemo and immunotherapy then 4 weeks to recover and then surgery
Jessica:
OK. How do you want me to respond when others ask? Do you want me to draft something and run it by you? I can also just ignore additional questions or send something vague.
Also - Let me know when you plan to tell your kids. Ilan is in town until tomorrow around 1pm so if Tay wants to talk with him, he’s here
Jessica recognized one of the first elements of my curveball approach - communication. She and my sister were willing to offload a lot of my communication. They both knew I would care about what was said and how people reached out to me.
Joelle:
(telling my kids) Tonight. After 6
You can draft something. Basically I appreciate texts but I don’t have a lot of info so no questions. We probably should do a CaringBridge
CaringBridge is a free platform for people to privately (or publicly) share a health challenge with their invited community. Give updates, get support, and stay connected. One of the most tiring parts of working through my approach to the curveball is that I relived seeing that unexpected spin and trajectory every time I had to tell another person. Furthermore, watching/hearing their pain as they suddenly saw the curveball pitch increased my sadness. But I knew my family needed to know and would quickly be a source of joy. And the same feeling extended to my friends.
Jessica:
OK. I’ll draft something later and send it for you to review. I’ll keep it vague with everyone but Reg and Karin, until you say otherwise.
Joelle:
Perfect
I’ll let the HBS ladies know
Jessica:
OK. If you are OK with it, pls bcc me on it so I know who knows what.
Joelle:
It’ll be a text. I’ll send you a copy
Jessica:
OK. Of that group, only Faith was planning to come tonight so she’s the only 1 with any clue that something changed.
Oh, and Steph. She was a maybe
Joelle:
About to notify them
Here’s what I sent them (because these friends appreciate details, I gave what I had)
This became the basis for my first post on CaringBridge and hopefully set the tone for my approach to all the curveballs I'd see while dealing with breast cancer.
Thank you for all your good wishes…but we’ve hit a snag. In the category cosmic are you fucking kidding me, the biopsy they did on Thursday came back positive - both the 8mm mass (tiny) and the lymph node. So surgery is delayed for the ever so fun experience of chemotherapy and immunotherapy. Probably 5-6 months of that (cannot wait). Then a month to recover and then the major surgery. Per the breast surgeon and my sister-in-law (MD), this is the best outcome path. My radiologist recommended the oncologist and the oncologist has all the information - hopefully I’ll be able to see him tomorrow. I have a PET scan on Wednesday - that’ll be fun. It’s a triple negative tumor - same as my sister and mom. The good news is that my prognosis is excellent as was theirs (look at them now!). The bad news is that it’s an aggressive motherfucker and the treatment will likely be aggressive too.
I’m sure I’m going to need support and help over the next six months. Right now, you know everything I know. Neal knows. Tracey knows. Heather knows. We’re telling my parents at 3;30 my time. We’re telling the kids tonight. Feel free to text support. I’ve asked Jessica to set up a Caringbridge for information and once we know the plan and timeline, I’m sure there will be many asks - so thank you in advance.
I’m ok - this is not exactly shocking given my genetics, but I feel like the cosmos flipped me the bird. But I’m healthy, strong and whatever these doctors need to do, I can handle it. Plus - I have lots of people’s wigs, apparently. If it were up to me, I’d start treatment this week. But first, the oncologist has to call back with an appointment. Good news is that multiple people have called him to say - get Joelle in, STAT. So… and then I have to think about getting a second opinion, I’m sure.
Welcome to the shit show. Love you ladies!
Only two other groups had to be thrown into my dugout: my parents and kids. I wasn't looking forward to telling them, but love and family are about sharing good times and bad.
Continue the story…
