#ChemoLife

I started writing a blog post about community and belonging and it was feeling very academic, so I decided to just switch gears and post generally about how I'm doing (which is the question I get asked most often from people.)

Physically, there is some discomfort that I have to deal with - the exhaustion and nausea in the 4 days or so after chemo is MUCH HARDER than when I did chemo in 2014. I sleep a lot, I eat really bland food (and you all know how much I love food), and I have random sensations and feelings in all sorts of other body parts - like my head and eyebrows are tingly and itchy as all my hair starts falling out, and my spine and hips are achy because I get this medication which prompts white blood cell production in my bone marrow. So physically it's just a matter of getting through and finding the things that bring relief.

Mentally, for a person who tends toward being anxious, I am surprisingly calm and grounded right now, despite the physical stuff. I don't know why that is - maybe because it's my 2nd time doing this, maybe bc there is no choice but going through this, maybe I'm just too tired to get wound up. I'm honestly not sure and I am surprised by my general lack of anxiety. I worry about the endurance needed to get through the MANY phases of treatment, so I try not to think about it. I feel so tired and I have 14 more rounds of chemo ahead of me.  How can I endure that?  And, chemo is just the first of four phases in my treatment path. It's overwhelming if I think about it all together, so I am just looking at phase 1 - chemo - right now and will deal with everything else later. I just need to get through Phase 1!

Some things I'm struggling with:

• Guilt about putting my family through this again. It sucks for me, but it also sucks for my husband, kids, mom, sisters...to have to worry and for Chris to just watch me be uncomfortable and tired. My kids are totally getting jacked because of Covid and because outside of what the school is offering them, I don't have the energy to offer anything else, so they are entertaining themselves, which means LOTS OF ELECTRONICS. Before the cancer, I'd organize PE and art. Now I do nothing. 
• Angst and sadness about losing my hair and likely my eyebrows and eyelashes. It doesn't matter how many people tell me this is not a big deal, and I am truly not a vain person, it is a big deal to look so sick and have the world know just by looking at me that I have cancer and to just not want to look at myself in the mirror. I hate it. The process of growing hair back sucks too, and my hair was NOT NORMAL last time for over a year. (Did I mention I'm on a shower strike?  I refuse to shower, brush my hair or dunk my head in the pool so as to avoid helping the hair along with falling out. Back in 2014, I was like SHAVE IT. Guess I lost some of that sass.)
• FOMO, a lack of "purpose" and some boredom related to not being at work (although it is truly a relief to not have to worry about meetings, schedules and timelines). I MISS the work and the people like crazy!
• Some fear and uncertainty about the future and effectiveness of treatment. My oncologist likes there to be a rational explanation for recurrence and I am an oddball case. To get breast cancer twice in my 40s is unusual and they are hypothesizing that it's related to what they call "postpartum breast cancer" which is, regardless of your age when you have your children, if you get breast cancer within 5 years of giving birth, the cancer tends to be more aggressive and less predictable.  My kids were 1 and 4 when I was diagnosed in 2013. (not very comforting when they are working toward "curing" me again.)
• Some feelings of loneliness and isolation related to the above (hence the original post idea about belonging - like where do I belong right now???) It's weird to get chemo and to be 20+ years younger than anyone else there. I only know one other person who has had cancer and chemo twice - even the support groups and support pages on Facebook don't have people I can directly relate to. It's hard to see people resuming some aspects of normal living (post Covid) and to feel left behind as I continue to diligently self-isolate for the foreseeable future. I sometimes feel like I'm alone in this shit situation and I don't like it. I love seeing my people at work THRIVING and doing cool things, and I also feel sad I'm not contributing.

What's helping:
The ASTOUNDING kindness, thoughtfulness and generosity of people across my many communities. Every single day people make sure I know I am being thought of and wished well. This takes the form of texts, calls, emails, treats, meals, coffee, flowers, tequila, salsa, drawings, cards, tarot readings. A woman I work with who I have only met in person 2-3 times, but who is like a goddess of compassion, sent me the most exquisite bottle of tequila I have ever seen in my life. Several moms from the girls' school reach out every time they run to the grocery store to see if there is anything I need. I subscribed myself to a flower subscription service because I felt like I needed color and beauty in my house on the regular, but I didn't need to, because people have sent me bouquets of flowers every week since I was diagnosed (including the instructors and owner from Barre3, where I work out). We've received donuts and ice cream (thanks, Ceej!), popcorn sets, smores kits, brownies, apple strudel, See's Candies galore, soups, meal delivery gift cards, entertainment for the kids. People who feed people (my former boss Susan, my sister Tiffany, my friend Shannon) have brought over week's worth of meals. My friends from college, who I had not really connected with since moving to Santa Barbara, invited me to an ongoing zoom and now we are back in touch after all these years, which I love!

The positivity and confidence of my oncology team is also helpful. My oncologist's main directions to me are to get outside in nature to move and not to worry which makes it easy to focus on the essential things.

Anything that makes me laugh. My kids and husband and many of you are helping here, so thanks for being funny, as is binge watching the Unbreakable Kimmy Schmidt and watching romantic comedies during chemo.

I'll close with some pictures:

I had Chris take my picture Tuesday after chemo #2 so I had a final picture of me with hair. I should have done it before chemo because I look tired and you can see my hair is already thinning.  Whatever, this is the best I'll look for probably a year, or maybe ever again. :(  I actually try to look cute when I go to chemo, like looking cute is going to help my treatment work better. (Weird!)

I am not allowed to pee in the same bathroom as the rest of the family because of the toxicity of the chemo drugs, so Natasha made signs and posted them all over our front bathroom so I wouldn't forget. These crack me up every time I see them.

I posted this on Facebook, but we have a family of House Finches nesting right outside our French doors to the backyard and they make me happy. They're like a part of the family now.

This inspiring quote (thanks Lucy).  I love that it ends with being loved. 💗

For everyone who has reached out to ask how you can help:
My sisters created a meal calendar, but we haven't posted it yet because we had a lot of food supply already. Probably next week or the week after, we'll post it if people are interested in making or sending a meal our way. I think we'll just need help in the initial days after chemo when I'm exhausted, but we'll be clear on the dates.

I also love hearing from people in any form so keep sharing news, jokes, pictures, etc.  I appreciate every single one.

Keep sending healing energy my way.

I appreciate you and thank you again for reading. 

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!