Some Good News & Some Disappointing News

Photo Cred: Olivia Nava

First the good news…I’ve finally settled into a beautiful airbnb in the Castro in San Francisco THAT I LOVE. I love having my own place! I hope to work out something to stay here for awhile. Right now, I’m here for a month. I’m happy to have a stable place to rest my head. I have been getting more friend medicine here, too. There’s a special community of neighbors who look after each other as well AND I’m close to many SF friends. All of this has lifted my spirits.

Now the disappointing news…The “red savior” is not shrinking the tumor. So we canceled the fourth and final infusion this past Tuesday. I am sad that neither treatment I’ve tried over the past 5 months was able to shrink the tumor. I was hospitalized after the last two infusions of this medicine and also received a blood transfusion, so I do feel a sense of relief that cancelling this last dose significantly reduces the odds of me going back into the hospital next week or needing a blood transfusion.

My doctor took my case to the tumor board (a group of doctors that review cases and make recommendations). The plan moving forward is, instead of going straight to surgery in 2 weeks, my doctor would like to try one more drug therapy, to see if it will shrink the tumor. My oncologist is hoping that the tumor will respond to this so then she will have some ammo in her toolkit to help treat me after surgery. As a reminder, one of the big reasons we kept the tumor in me during treatment was to help us understand which drugs work vs don’t work because the only way to know is if the tumor responds to the drug. The first infusion is scheduled for Tuesday, October. 18th and the next/final dose is a week later, assuming insurance covers it.

I think my brain has been rewired a bit in this treatment process, only concentrating on what I’m moving through & what is directly in front of me. So now, I will be focusing on how to best care for my mental/physical wellness on this new drug and beginning to mentally prepare for surgery. Of course I’ll have family and friends with me here in SF to help take care of me. I’m hoping we can coordinate housing for my family so we are still in this great community I’ve landed in and maybe I can even keep this great apartment I’m in to keep some of my independence.

I was told on Tuesday by my oncologist I would have a mastectomy (the tumor is too large for a lumpectomy). The surgery date is set for November 10th at UCSF. I do not know the details of the surgery, if I’ll get reconstruction, etc at this time but I’m sure over the next few weeks as I meet with the surgeon and plastic surgeon we will develop a game plan.

I made the liberating decision to shave my head before the rest of my hair could fall out after the first infusion of The Red Savior about 6 weeks ago. I feel free and had a great time at the barber. I got to experience fun styles like a mohawk, a mullet and what I would look like if I was a man enrolled in the US Army. I ended up going Mr. Clean and having a smooth shave.

Thank you all for all the support through this. I really do appreciate it!