She's Going the Distance (aka Endurance)

Endurance is not one of my strengths. I ran a half marathon once a couple decades ago and my approach to training and the run itself was to basically manage it in small, time bound chunks to just survive. It was a race sponsored by my employer at the time (Go PacifiCare) and felt like a good challenge for Chris and I. I trained entirely on a treadmill at the local 24 Hour Fitness following the Runner's World plan for first-time half marathoners. While doing training runs, I watched the treadmill clock and distance like my life depended on it with a constant inner commentary of "one mile down, 13 minutes, only 6 to go, oh let's play Madonna for this next mile...15 minutes of Madonna can get me through this..." etc.  I never got a runner's high. There was never a point where endorphins kicked in and I felt euphoric. It was miserable and I had to find mental ways to just get through it to finish the challenge (and to beat Chris, which I did, so yay.)  

Same thing is true at work - my "specialty" is building new things - new teams, new process, new philosophy, new tools.  Unintentionally, all of my jobs have involved building something from scratch or redesigning something. I do terribly with redundancy, cyclical work or assignments I have to do more than a couple times, or which last more than a few months. I need clear start and end dates on things, I don't want to deal with 18 versions, and I always need a vacation or break to be working toward so I can sustain momentum and energy knowing very specifically how far away I am from my next assignment or vacation.

Well, now that I've written that all out, maybe it's more sustaining the status quo, or redundancy that I don't like.  Give me a five hour hike and I am ALL IN. Give me that same five hour hike every week for a month - and nope! Even with ice cream - we used to do ice cream Sunday every Sunday of the summer, but after about three visits to the same ice cream shop I was just totally not interested...So let me pivot here mid-stream and say that maybe it's more about repetition, redundancy and sameness that drives me crazy!

The reason I opened with that is because I am REALLY STRUGGLING with feeling stuck in a never-ending week-long groundhog day cycle of chemotherapy.  I imagine everyone feels some sense of this with Covid. Keeping track of the day of the week is impossible. Some days it's 2:30 and I have no idea where the time has gone or if I've eaten lunch yet. I spend a lot of time going back to the homescreen on my phone to get the day, date and time because there is SO MUCH SAMENESS to every day. With 16 rounds of chemo added to that situation, running May to September, I am bored and fatigued and antsy to get this part of treatment done with and it is making me crazy.  I think Covid is exacerbating this too. Last time I had chemo in 2014 I had fun rituals - I got a massage w reflexology and a facial after every chemo cycle. My cycles were three weeks apart rather than weekly, so I always looked forward to eating yummy food the third week when I stopped feeling nauseous.  I could arrange for visits with my sisters and friends to break up the cycles.  My mom was over almost every day to help w the kids and clean, do laundry.  In the current state there is nothing - no cyclical "reward", no north star for when I am done, no fun rituals or traditions bc there is NOTHING TO DO while isolating. Plus there is a bit of dread that this is Phase 1 of 4 phases so it just feels never ending!

Anyway - it is making me crazy and cranky and I am chaneling my excess energy into a lot of research and thinking about virtual school this Fall and the working parent experience. My apologies to my school principal, head of our PTA, Goleta Superintendent, Public Health Officer for Santa Barbara and even Governor Newsom who are the recipients of my energy channeling currently.  Maybe it will turn into something and I will have a new North Star.  Or I'll find a new interest in a matter of weeks anyway.  It's anyone's guess in the no man's land of unending SAMENESS.

Gosh, thanks for hanging in there for a fairly meaningless rant I needed to get off my chest!

Things that are making me happy:

• The pile of cards I got from my friends at Sonos: One of my awesome coworkers coordinated a card drive at work and dropped off A LOT of cards for me to read throughout treatment. I open one  day, reach out to the person who wrote it and say hi, and it brings me great joy to have those connections!
• My new approach to being "active": I am a little embarrassed to admit that my default for being active was how much I worked out.  Which is generally barre or cardio yoga five days a week. After speaking with an expert in post partum breast cancer about inflammation and oxygenation and cell development, it sort of clicked for me that working out five days a week isn't actually being active. So I have added a goal of 50,000 steps a week as well. Which is about 6,000 steps on days when I do a class, and 10,000 steps when I don't, or 25 miles a week. It's my first week and so far I am succeeding in meeting my goals.
• Mindy Kaling: I'm listening to Why Not Me? while I walk and also binge watching The Mindy Project (which I have never seen before) and obsessed w all things Mindy.
• Summer fruit: The cherries and watermelon are killing it this summer!
• Floating on Karina's Pusheen inner tube in the pool: Although the summer has been disappointingly cool this summer, when it's warm I am digging floating in an inner tube in the pool and blasting summer on my Sonos Move!

Things I'm struggling with:

• My looks: On top of baldness that makes me look like the victim of a nuclear bomb, I have almost entirely lost the brows of my right eyebrow and it makes me irate.  I am grateful for cancer treatment and progress on cures, AND I wish someone could work on treatments that don't make the patient suffer the additional pain of looking like Mrs. Potato Head for many months!
• Groundhog day in perpetuity: Nothing to add here, just a big, dramatic sigh!
• Virtual School: I am so relieved we are not going back to school in person, and also super sad for my kids and the awesome teachers, and feel compelled to try to make the Fall AMAZING for them so I am investing way more time than is probably healthy developing ideas for additional learning, activities, curriculums to do with the kids.  

Things I'm pondering:

• Planning a trip for October between chemo and surgery: We're starting to think about a plan to do something in October after chemo but before surgery. The kids will be in virtual learning, I will have no active treatments happening, and as you know we are going stir crazy. We are thinking of exploring a bunch of parks - Bryce, Zion, Arches, Yellowstone, and either renting and RV or staying in Air BnBs for like a week at a time.  I hope we can make something happen.  My hesitancy is in dealing with the kids during long drives and then figuring out the food situation - with restaurants closed and stores often out of things still (at least in Goleta) I worry that it might be really hard to maintain normalcy on the road...But I want to try.  Let me know if you have any tips!
• Work: I miss work but the freedom of not having to sit in hours after hours of meetings is like a GIANT GIFT. I need to figure out when I go back to work how to not have that be my reality again and I feel like I have said this many times before - after both mat leaves, after my first cancer, but then I fall back into full days of meetings which make me feel frustrated and not accomplished.  This overlaps a bit with the working parent challenges...but I am putting a lot of thought into how we work and how to radically change it.

Inspiration:

That's all I've got (and I realize it's not much.)  Thanks for reading!

Speed Bumps - Not a Fan!

As a planner by nature (hence a career in Ops), I don't like when things don't go as planned. Spontaneity, going with the flow, figuring it out when we get there...none of these things are in my nature and cause me much more anxiety than joy.  It takes me hours and sometimes days to make decisions on the most basic things because I need to do the research, read reviews, ask people with experience on the thing.  I've always been this way. In junior high school I created a calendar of what I was going to wear for the next month and then made sure I had a nail polish color to match each outfit and I would do my nails every single night to match my clothes. When I complain because the day after my kids' birthdays they are already asking about their birthday for the next year - I ONLY HAVE MYSELF TO BLAME bc I model that forward-looking planning for them and say the same thing verbatim after every one of my birthdays.  "Next year for my birthday I want to..." Well, maybe don't get me started on my birthday because it's an obsession and I could write pages and pages on why birthdays matter. 💓

So anyway - Plans. They're good. They make sense of the world. They give you a map to follow. They preempt potential problems. They cover all the details and lead you to the next step and get you to your destination successfully.  I love plans!

Which is why, after posting about math and mind games a couple weeks ago, which outlined my treatment plan and the way I was quantifying it and getting through the insane number of steps in the plan, it SERIOUSLY PISSED ME OFF when the plan hit a Speed Bump last week when I had just barely started the 2nd phase of chemo.

Every chemo cycle I have to get bloodwork the day before chemo so they can make sure I am strong enough and my immune and organ functions are in tact enough to withstand another round of chemo.  Last Monday (7/13), after feeling surprisingly good on the new chemo, my bloodwork came back with my liver numbers having gone up almost 5-fold from the week prior, putting them WAY above the numbers they consider normal.  Once I saw the results, I started text stalking my oncologist with my 4,000 questions and he let me know that while it was not unusual for the liver to respond to the chemo, he thought I probably needed a week off to help my liver heal AND he thought they would need to change my chemo to the non-generic form which was less toxic to the liver.  My reaction - WHAT THE ACTUAL FUCK!  I was mad and I wanted to blow up that mother effing speed bump into teeny tiny gravel and demolish it into dust as I sped over it. Here is some of what went through my brain, most of which I actually texted to my oncologist in rapid succession in about a 10 minute period (and he kept me as a patient anyway.)

• Are we sure this isn't cancer in the liver?

• Can I sign a waiver and do chemo anyway?

• If we skip a week does the cancer start growing back right away?

• People I know have suggested Beet juice, citrus and other supplements as a way to detox the liver, can I take all the things and re-test blood tomorrow so I can still do chemo?

• Why is this happening TO ME? Did I do something wrong?  Should I stop eating meat, using salt, living with my kids who never stop talking (insert MANY other things totally unrelated to liver function which I also asked him about)

Needless to say I was NOT HAPPY!!  And despite my protests and willingness to sign my life away, I did have to skip the week anyway and I was not graceful or grown-up about it at all.

I spent the week in a pretty pissed off and mopey state - which really only punished me and my family. I overthought every single thing I was doing - is this good for my liver or bad for my liver?  What if my liver never recovers and I can't have any more chemo?  I could go on and on, it was a mess. I was a mess. I did a lot of crying and shrill yelling at the kids which is how my anxiety comes out.

I also did bloodwork again on Friday to see if my liver was recovering, and it was but very slightly...both numbers had come down maybe 10-12 points (and I needed them to come down 50-90 points.)  I went again on Monday and they had each come down another 10 points or so.  I once again started the text stalking to my oncologist and he again expressed concern about me continuing with chemo with my liver numbers and I again became a hysterical mess and it was a very dark road which I won't detail as based on the above I am sure you can imagine the drama well enough on your own.

That said - my oncologist did some research on recent studies, and consulted with other partners in his practice, and came to the conclusion that if I was switched to the non-generic version of the chemo, which would also remove the need to give me a steroid and other pre-meds, my liver would be fine and would recover to normal once the chemo stopped.  I am sure there are a million more sciency details to this decision, but Tuesday morning (yesterday 7/21) on the day my chemo was scheduled for 2 PM, he texted me at 8:18 AM to say we were on as planned.  HALLELUJAH!

Which brings me to the sort of point or lesson of this post.  I am not a big fan of platitudes - the phrase about if things aren't OK, it's not the end yet - I don't buy into that. I think some lives can be very difficult and glossing over it with feel-good phrases is a disservice.  When people tell me I will be fine bc I "fought" and "beat cancer" before or because I am "so strong" I appreciate the sentiment but I don't internalize it. I think the medicine and how your body reacts to it is like 95% of cancer survival...And I am so grateful for medical research and advancements in breast cancer treatment. I think mindset and lifestyle behaviors help, but I don't think any one person is responsible or in charge of whether their cancer treatment works or not. EVERYONE wants to survive cancer and for some reason some people don't and it has nothing to do with how much they want to live.  Anyway, sorry, that was meant to convey that I think I am a pretty realistic person and err on the side of facts, science, reason. 

HOWEVER, in this case I think I learned (or perhaps re-learned) an important lesson about being flexible and agile and not looking at a speed bump as the end of the road. In this specific situation, the speed bump actually landed me on what I consider a better path - with what some might consider a better form of chemo with better outcomes, less "extra medicine", shorter infusion times. It reinforced for me HOW MUCH I want the chemo as an important aspect of getting rid of the cancer. It's easy to complain and diss on the chemo and to look really forward to the day it is behind me (hopefully for good this time), but the thought of not being able to get it FOR ANY REASON was truly terrifying and devastating to me because I know it is part of the path to health. It brought me back to being grateful for the comprehensive treatment plan (even if it's hard) and to my body for being strong enough to tolerate it. The speed bump was in fact a temporary blip and my reaction to it was MUCH BIGGER THAN IT DESERVED!!! I hope I can keep that in mind if there are additional speed bumps in the path ahead (which I still hope there aren't - because PLANS ARE GOOD AND ARE MEANT TO BE FOLLOWED!)

As always thanks for the continued support and for reading my random ramblings!

Getting by with Math and Mind Games

I have always been pretty good at math and data. I used to tutor math students in high school. When I went to college and became a Comms and English major, I appreciated good data and numbers and used them whenever possible in my comms projects. In my career, as much as I loved being a recruiter, I was really focused on the numbers behind the magic, and ultimately (and pretty quickly) moved into programs and operations because it synced with my brain more than the softer skills used in recruitment. I designed a really early metrics program for recruitment which won an award. At Sonos, when I moved into People Programs, I couldn't let go of recruiting operations or analytics and always nose my way into those areas where I no longer have a job, just a strong interest that I can't let go of. I quantify EVERYTHING.

Which leads me to how I am getting through the freaking long road of cancer treatment (as previously described) which runs May 2020 to January 2021, which is to make it a bit of a math exercise and mind game.

Here is how I'm using math to measure progress and make it feel manageable. As of Monday night 7/6:

• I am 100% done with phase 1 of treatment! Phase 1 was the GNARLY AC drug combo (the assassin!) every other week for 4 doses over 8 weeks.  Each infusion was 25% of phase 1 and I knew generally where I was on the schedule of side effects each cycle.  In my mind I would be like, you are 90% done with the suffering THIS CYCLE, you can do this! Sometimes I'd even watch the hours tick by on my phone and be like probably 27 more hours of feeling like this, you can do this. (Of course there was also crying and whining, too...but the mind games and inner encouragement helped reduce some of that.)
• I am 25% done with ALL the chemo 2.0 infusions (Phases 1 and 2)! I have a total of 16 rounds and have finished 4 of 16 which is 25% of the total chemo needed. 
• I am 40% of the way through the time committed to chemo!  I will be doing chemo for 20 weeks, and I am 8 weeks in, so 40% done with the time investment in chemo.
• I am 20% done with active treatment for my recurrence! As of today, 8 weeks into chemo, I have completed phase 1 of 5 phases, so I consider myself 20% done with active treatment. 

So that's a little bit of how the numbers work in my brain - and how using the 40% data point might be helpful because it sounds like pretty good progress - ALMOST HALFWAY DONE!  So it becomes a bit of a game for me to look at the numbers and internalize the ones that resonate with me most around progress already achieved and what remains ahead.  (Maybe everyone does this in their life...I have no idea, I have always thought I was a bit of a weirdo with the quantifying of things.)

I also try to ONLY focus on the chemo phases FOR NOW because there is so much more to come after chemo it's overwhelming and little defeating to get my head wrapped around all the complexity and parts. Someone told me yesterday "cross bridges when you come to them" and I think it's amazing advice for people with anticipatory anxiety...just deal with the bridge in front of you right now and cross that, which for me right now is chemo and it's a long bridge.

What I have not done is ask about future recurrence risk, survival rates and length of time.  I just can't. I don't want to worry too much about a future outcome, and am trying to stay focused in the here and now. The prognosis has remained good with my doctors focused on "curing" me which means getting me to "No Evidence of Disease" (NED) this year.

What I'm struggling with: 

• Having very little "feel good time": The window of "feeling good" during the last AC window was almost non existent, it was maybe two days of feeling about 85% well and needing to have the courage to walk back into chemo where I know I am going to get knocked on my ass again is INCREASINGLY DIFFICULT every time. It's probably overly dramatic, but I told my sister I think of it as walking to the guillotine...like there isn't a choice, but you know taking that walk leads you to something extremely painful.
• My mom's health: My mom has been in critical condition in the ICU for 10 days now (not Covid-related, it's because of her heart). Having to make medical decisions on her behalf and chase down information with the hospital because we aren't able to visit in-person has been like another fulltime job and also sad and stressful to think of my mom in the hospital so sick and frail all by herself.
• Covid: All the new insights on the illness being vascular, seeing young people die, and watching the cases increase dramatically while people still don't wear masks is killing my soul. If you don't wear a mask, I take that to mean you think I should stay home or die because I am at high risk. It's disgusting to not care about anyone except yourself.
• Exhaustion: Not much to add here. Normal everyday stuff is harder, I have less ability and patience to help the kids. Exercise, which I have to do, is SO HARD, and I have to go slow and take breaks. Lots of people have reached out for phone calls or zooms and I just don't have the energy.
• Wearing a hat: It's so hot, chemo makes me hotter, they shut down my ovaries chemically which induces menopause and hot flashes, so I've got a trifecta of heat-inducing phenomena happening in my body and I am also mortified about the state of my bald with some peach fuzz nuclear war survivor head so wear a hat anytime there is a chance I will see a person, even in my own home, and it is GD hot and I sweat all the time.
• The costs of healthcare: Learning what's covered or not for both my mom and me has been depressing and really personalized the healthcare for profit problem. We need to do MUCH BETTER as a country in this area!

What I'm enjoying:

• Watching Romantic Comedies during chemo: I had not seen a new romantic comedy in probably a decade - since having kids. I watch one every chemo cycle and have done: Chef, Always Be My Maybe, The Perks of Being a Wallflower and Isn't it Romantic. Have loved all of them. My sister Tiffany gave me a long list of recommendations I am working through, would love more recommendations as well.
• Listening to books while I walk: Dear Girls by Ali Wong, Born a Crime by Treveor Noah, and Why Not Me by Treveor Noah is next.
• Reading: I have legit read probably 12 books during chemo. I haven't read that many in a year in FOREVER, maybe since having kids.
• Connections: Hearing from faraway friends who I have lost touch with. Connecting with other Young Cancer Survivors. Learning and being inspired by close friends in my life when I reach out and ask for help. Being humble enough to ask for help. Keeping my family informed about my mom and getting help from them on decisions. Having Chris' brother and his family in town has forced us to do some socializing while masked and social distancing...which we really have not done and would not have if they weren't here. That has been good for my soul.
• Not being bound by time: This is a weird one and I'm surprised I enjoy it since I am a major planner and scheduler, but not working right now, and not having the kids in back to back activities, means time sort of doesn't matter. Sometimes we don't eat lunch until 2, if the kids sleep until 10 we're like great, no worries, if I'm exhausted in the afternoon I nap (which happens a lot.)  It's freeing to live with the freedom to just sort of let things happen.
• Barre3: I have continued to take B3 online 3 times a week during non chemo weeks so I hope I can continue tht. It's hard, but with the streaming I can pause the workout when I need a real break, bring my heart rate down and get water. The change in format from Covid actually is better for me right now so I am grateful when I do get to get those workouts in.

I think that's it.  This is probably quite boring.  Here are some inspiring words I have found which are bringing me some light, plus a pic of my cat who is ON ME every second of the day right now and I love him so much. 

Thanks for reading. I love hearing from you, so reach out via text or slack anytime!

#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!

The Diagnosis (2.0)

It's hard to explain what it feels like to get a cancer diagnosis. Terrible, scary, surreal, vomit-inducing, like a death sentence, or maybe the worst breakup of your life. I'll just go with bad. It feels really bad.

When I was originally diagnosed in December 2013 I knew as soon as the call came through. They email when it's nothing, but they call when it's cancer. They had told me that up front I assume to sort of mentally prepare me. I was driving Natasha up the hill to preschool and Kaiser called and told me to pull over. They told me it was breast cancer and they were sorry and gave me a bunch more information about all the appointments I would need. All I could think about was to keep my responses on the phone upbeat and short so little 4 year old Natasha didn't know I was getting bad news. Then I had to continue up the hill with shaking hands, and tears spilling down my face, to get her to preschool. I dropped her off in class, turned around and started bawling walking down the hall to the exit. This was a new preschool - we'd been there maybe 6 months - and I didn't know anyone well enough to be like HELP ME!!!  I'm not actually sure how I made it back home that day. Or how I told Chris. I just know there were a lot of tears and chronically shaking hands.

This time around was maybe worse?

In late January/early February I noticed what looked like a rash on my left boob.  I tried keeping it really clean and dry in the hopes it would go away but, when it didn't, I contacted the oncology office. They brought me in for an appointment with the nurse practitioner who did a full exam, said she thought it was a skin irritation and referred me to dermatology with potential scans needed depending on what the dermatologist had to say. She had me use hydrocortisone cream on the skin. The first available dermatologist appt was about three weeks away and by the time it arrived we were under physical distancing orders and so the appointment became a tele appt (by zoom). Without seeing the rash in person the dermatologist decided to prescribe a steroid ointment and give it two weeks to clear up before bringing me in for a biopsy. After two weeks there had been no change, so he brought me in for a biopsy.

Since the bumps are visible on the skin, and even though the dermatologist mentioned cancer a couple times, I really thought it was nothing. I mean the oncology NP looked at it and thought it was nothing. So when the dermatologist called last Friday (4/25) to tell me it was showing as metastatic breast cancer I was shocked. Last time my whole process started with whether it was breast cancer, this time since I'd sort of cleared oncology in my brain, I was optimistic it was a skin issue. I did not expect the diagnosis which made it worse - I felt stupid on top of being scared and shocked, like why didn't I expect this, or know this would be the outcome, and what did I do to deserve this, why was I being punished.

As is true across the country,  we are all cooped up at home, and the girls were on their classroom zooms when the call came in. I was sitting at the kitchen table, which has become my office, and Chris was at his work desk. We get terrible cell reception in our home since we're a little out in the boonies, so when the dermatologist called, I had to go in the backyard to hear him. After the dermatologist told me, I yelled to Chris, IT'S METASTATIC BREAST CANCER WHICH MEANS I AM GOING TO DIE SOON. The dermatologist was like - that is not what it means - but you do have to get in touch with oncology...and I'm sure he said a lot of other things I didn't hear. What I could clearly hear was the neighbor kids playing basketball and some women walking by the side of the house exercising and chatting and my mind was like OMG - DON’T YOU KNOW THAT MY WORLD HAS STOPPED AND I HAVE CANCER?!?!?!? Like I expected the world to stop or pause for me.

Immediately after the call, massive anxiety set in (evidenced by how I shared the news with Chis), which for me is a nauseous stomach, tight chest, shaking hands and inability to breathe. I thought I was going to pass out. Somehow I found my way quickly into work mode - this is just information - what can you do with this information to work through this situation - there are practical next steps you can take. I immediately let my team and boss know I needed the day off and shared the diagnosis, and then called the Oncology office to get an appointment to come in to start talking next steps. I let my kids know so they would know why I appeared stressed and distracted and potentially cried. I let my family know, my sisters and mom, and a few close friends.

Then I stopped functioning altogether.  Once I had no next step, I was paralyzed with fear. I reached out to an art therapist in my network and asked for help and she was available in a few hours, so then I distracted myself with some work slides I needed to make, cried a lot, focused on breathing...and that has been my state ever since. Daily emotional swings, lots of crying and trying to breathe out the anxiety. That first day, I didn't eat at all and only got two hours of sleep.  The next day (Saturday) I found my way to an emergency helpline and called twice to just sit on the phone with someone who could help me breathe. I connected with a different oncologist whose daughter I work with and he was very reassuring and helpful and agreed to take me on as a patient and see me over the weekend. Since then, there has been less crying, although it hasn't stopped altogether.  There is no joy in eating like there usually is so I'm barely eating and I can’t sleep.  I'm exhausted - I mean being a working parent and also living through Coronavirus times is exhausting enough - but I am more exhausted bc of the chronic anxiety, not eating and not sleeping, so I usually fall asleep pretty well, but wake up after only a few hours and then am stuck with my terror and sadness until it’s morning enough for me to get up and start the anxiety and fear circle all over again..

I’m really sad I have cancer again. I don’t understand it. I went with the most aggressive proactive treatment available to me 6 years ago, I have shown up to all check ups, done my blood work, eaten lots of plant based meals, fruits, and veggies, taken my hormone blockers diligently. I volunteer and give to charity. I love my job and care about it passionately. It seems unfair and mean to have to go through this again. Like it’s personal and there is some reason it’s me. I’m sure I’m also irate somewhere inside my soul, but right now I am sad for me, and for my family who has to go through this again and think about sickness and death, especially my kids. 

I’ll NEVER be one of those people who is like - well in some ways I’m grateful I got cancer. Nope. I’m a reflective person, grateful for my life and aware of how lucky I am even in the best of times, so I don’t feel like I need cancer to teach me those lessons. I don’t want it. I want to give it to someone who sucks and deserves to suffer. But I can’t and I know that’s just wasted energy. But there’s a helpful tip for you - support in the form of of anything that starts with “but think of the upside of having cancer” is a big no thanks for me.

Also, I guess I should be careful about using the word “never.”  I’ll get to that in my next post once I know what my treatment protocol will be. Thanks for being here to read my thoughts and support me.

January 2015 - Every new beginning comes from some other beginning's end

Today is my last Herceptin treatment.  After three surgeries and a year of every three week cycles of  lab work on a Friday and  then an IV infusion on Monday and all the poking and gross tastes and smells and my life sort of revolving around the "cycle" I am done.  And I am SO ready to be done, so WOOOOOOOHOOOOOOOOOOOO! 


If you could all just chant with me for a second too, that would be helpful.  I. WILL. NEVER. HAVE. TO. DO. THIS. AGAIN. EVER. EVER. EVER.


Thanks.


So medically now the only treatment I continue with is the Tamoxifen - and that is a long road.  Five-ten years.  Every three month visits with my oncologist until next December which marks my two year anniversary of diagnosis (and the GREATEST risk period during which a recurrence might occur).  Then I move to less frequent visits with an eye on the five-year-mark when I become officially NED (no evidence of disease) which will be 2018, I will be 45 and I am doing something MONUMENTAL.  So stay tuned. 


I have been really so lucky in the past three months or so because as you all know, I took a new job with Sonos and we are moving the family to Santa Barbara this summer.  All the change has been OVERWHELMING,