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!