The Treatment Plan (and never say never)

I have been conflicted about blogging about my cancer this time. At first, I was like, I should write a book, because getting diagnosed with a cancer recurrence during Covid19 is a unique, pretty jacked up experience. But then I read several devastating news stories and personal blogs coming out of the pandemic (which I don’t want to list here) that made me feel like my experience doesn’t need a spotlight. And then I started to wonder why I wrote about the cancer last time anyway.  Was it an outlet? Did it force me to see things more positively so I could share the story with people in a way that didn’t devastate them?  Was it a way to get people to think about me (like give me attention)? I honestly don’t know, I think I did it for myself, but maybe not. Anyway, here I am writing so I obviously made the decision to do at least one more post to share the details of the treatment plan, which is the question I keep getting asked, so I am hoping this helps bring people along.

Overall my prognosis is good, all things considered. The last two weeks were spent in A LOT of appointments and a lot of tests, including CT/PT scans and ultrasounds on my armpit and heart.  After all the testing, there is no sign the cancer has spread beyond the lymph nodes in the armpit into any other organs. They are calling it a localized recurrence.  This is the lowest grade recurrence, so good news. Their plan is to "cure" it again and go more aggressive with hormone therapy once I'm done to prevent recurrence again. It's called metastatic bc I have no breast tissue, so the cancer has metastasized to the chest wall and lymphatic system. 

The treatment is aggressive and long. I mentioned in my last post the important lesson of never saying never. I made the mistake of scrolling back through some of the posts from last time and there were two where I was certain my experience with cancer was going to be a one-time deal. I’m sure at the time it was more of a declaration to the universe that I’d done my thing and was good to go, like hey universe, leave me alone with the cancer. But it was hard to read my 6-year younger self convincing herself she was done with cancer. Which prompted our openness to moving to Santa Barbara. It has felt for YEARS like the distant past.  Sorry, younger self. It’s back and it’s looking like another full year of treatment. 

I got my port in last Thursday and the first chemo was today. I will have 16 rounds of chemo split into two parts. For the first four rounds I get a combo of two drugs administered every other week, so 8 weeks total. These drugs are strong, I will likely lose my hair as I head into the second round. Then I change drugs and do 12 weekly chemo treatments which takes me right to Natasha's birthday on 9/22. During the intake meeting when they go over the 4,892 potential horrible side effects, the PA told me – you WILL be tired. And it will be compounding. You might have to nap every day. (I thought as a working parent I had already maxed out on being tired, so we’ll see what this feels like.)  If you were here for the last go around, you’ll know how much I loved not having hair so I’m also particularly thrilled (being sarcastic) to be hairless for the entire summer and heading into the fall. (I guess that’s also one good thing about being in shelter in place.)

After chemo I will have surgery to remove my implants, all the skin where the cancer was found and to remove the rest of my lymph nodes from the left side. This terrifies me as well bc it might limit my mobility and I get a lot of meaning and joy in my life from movement through barre3, hiking, dancing, kayaking. I can’t imagine being limited in what I can do. Then I do radiation for 6 weeks followed by reconstruction (if I so choose, I am seriously considering just not doing this). I imagine this is going to run through the rest of the year, but we're getting through chemo before talking about scheduling any of those other things. Also, as overwhelming as it is to be looking at such a long road ahead, I am BEYOND GRATEFUL there is a road, which has been traveled and improved by thousands of women before me.

The first chemo went fine today. Because of Covid, no one can bring guests to appointments, including chemo, so it's me solo this go (Chris came w me to every appt last time.) It’s a totally different drug mix from last time and one of them is referred to as the “red devil” and I have heard difficult things about it. My nurse told me she thinks of it as a Kill Bill style cancer assassin which was a helpful shift in my mind to get over the anxiety and calm down.  Pew, pew, pew, die cancer cells. 

 

I’ll close with sharing that I have been EXTREMELY impressed, thrilled really, with the Ridley Tree Cancer Center. Last time I was in Los Angeles at the Kaiser South Bay and it was great, so I feel like I have a high bar. Ridley Tree has created a comprehensive team assigned to my case with four different doctors, a patient navigator, nutritionist, physician’s assistant, social worker and chemo nurse. They all are totally accessible, several have given me their cell numbers so I can reach out directly, and every time we talk, they reinforce that they are all one team working together to heal me. I feel authentically cared for as a unique person, which has made everything easier. Also, they celebrate my millions of questions and let me put on my recruiting hat to understand their careers, why they chose to go into cancer care.  I honestly can't help myself from wanting to know the people helping me and how they chose these noble paths. 

I am also grateful for the many kindnesses from friends, family, coworkers, fellow school moms, neighbors. I was even able to connect with a friend's sister who had almost the exact experience I did (breast cancer, bilateral mastectomy, hormone therapy, then 6-7 years later a recurrence to the chest wall.) When given the opportunity, I do think people show up for each other in spectacular ways. We are trying to figure out what food/meal support might look like once I understand how my body reacts to this first chemo cycle and will let everyone know when there is a calendar of what's needed. (I sure wish we could rehire a housekeeper!) Thanks everyone!