Post Cancer Life
Hi There - Remember me? Life has been zooming away and I kinda forgot this existed. I mean, not really, but all of a sudden I found myself back in my old life focusing on work, and school assignments, and concerts, and way too many other things that I just haven’t had the time or energy to write anything in months. It would appear as though everything is back to normal, but of course nothing will ever be “normal” again. But I think we can safely say things are as normal as they could possibly be - way more normal than they were a year ago, that’s for sure.
So let’s back up a bit. Last time I posted, it was August and I was preparing for my last CT scan which was right before we took a vacation to Yosemite. Spoiler Alert - the scan was all clear. I got the news while I was splashing in a stream in Yosemite Valley with my family and our best friends. It was sort of a surreal experience really - like I was floating above myself watching it all happen. My doctor told me that there is still the dead tumor still there, but no sign at all of any active cancer. The radiation did shrink it a little, but not much, but that’s not really why we were doing it anyway. The whole purpose for the radiation was to give us the best chance of the cancer not coming back. After getting the call, we carried on with our amazing adventure in Yosemite. It was truly so nice to get away and relax and float in the lake and stay up late staring at the stars and laugh with our friends. Those trips don’t happen nearly enough and I’m so grateful we got that time together. Thanks to Rebecca and Kevin for braving a cross-country flight with 2 little boys to make that all happen!
Soon after coming back from Yosemite, it was time for school to start. This was such a huge change for our family. The last year and a half have been spent doing zoom school from the coffee table and finally these kids were able to get back inside a classroom - of a whole new school too. Our new home is in a great school district and we’re just a 10 minute walk to the elementary school. This is the dream! I always wanted to live within walking distance to school and now my kids get to live that. Everyday we get up and make breakfast, kids get ready while we start working and then Eric will walk them to school. Eric and I get to eat lunch together every day and then I walk to the school and meet the kids at the end of the day and then walk them home. We are still enjoying our new home so much and often look around and can’t believe we get to live here. Celebrating the holidays here is so much fun - our whole neighborhood really gets into the spirit too. Everyone went all out for Halloween with lights and decorations and then immediately following Thanksgiving, all of the houses were lit up with Christmas lights. I feel such a sense of calm and peace here and I can’t express how much I needed to feel those things after so much unrest the last year.
In September, Harrison turned 7! Last year, as you may recall, I was stuck in the hospital for his birthday and it was the hardest day of my life. I was so heartbroken to have to be away from him on such a special day and I can’t begin to describe how happy I was to get to be with him for this year’s birthday no longer sick and stuck in a hospital.
In October, my great friends from Michigan, Erin and Katie, came out for a visit and we got to have an amazing girls weekend in Laguna Beach. They surprised me over the summer by telling me they wanted to come out and see me, which was so thoughtful. I needed that trip too! I could have taken them sightseeing in LA or traveled up the coast somewhere more exciting - but instead all we did was relax by the pool and walk along the beach and eat at incredible restaurants, and hang out in the room overlooking the ocean and reminisce about our good ol’ college days and it was perfect. I feel like we got in some much needed gossip and often times that lead to really deep conversations that I haven’t been able to have with anyone else. I feel like I can be myself in front of those two more than anyone else in my life and I love that about our relationship and I know that will never change no matter how many years go by in between visits. Those two are the best things to come out of my time at college.
Other than that, Eric and I have been filling our free time with going to all the concerts. I swore that when the world opened up again and I got healthy enough, that I was never going to turn down a concert. In the past few months we’ve seen Mt. Joy, Dave Matthews, Avett Brothers, Pearl Jam, Maggie Rogers, Band of Horses, Foster the People, Cold War Kids, Brandi Carlile, Black Pumas… who am I forgetting, oh yeah - The Rolling Stones! I’m am buying all the tickets and going to all the shows now and forever. We’ve already bought several for next year - Coldplay, 21 Pilots, Billie Eilish, Foo Fighters, Peal Jam, Kings of Leon, Imagine Dragons, Gang of Youths, and we finally get to go back to Red Rocks and see The Head and the Heart. Concerts are my happy place where the fear and grief and pain get drowned out by overwhelming exhilaration. Even though my body is still recovering and I’m still in pain, I can push past it for that feeling of being fully alive that I get from live music.
Okay - let’s talk about post treatment life. It’s a tough one. It will continue to be tough forever, but hopefully less and less with each passing year. I have so many aches and pains that have just become the norm and this chronic pain is just something I have to learn to adapt to. I have to learn that my body can no longer do what it used to. It’s like I’m living inside the body of a 65 year old lady - not saying that that’s old, but I’m still 39 and I shouldn’t have to shuffle around in the morning while my body slowly wakes up, but here we are. I have difficulty standing for long periods of time - my bones and joints ache all the time. I still have stabbing pain where my hip meets my abdomen where my tumor is and that leg is still numb and tingly in spots. My arm where I had the PICC line still hurts - I still sleep with my arm propped up on a pillow much to my husband’s irritation. I have a dull ache in my back where my kidneys are often which makes standing, sitting, and lying down painful - all due to the damage that chemo has done to my body. I can’t ride in a car without getting nauseous - still keep my Compazine handy for those barfy days. I still have some neuropathy in my finger tips which makes it super frustrating to try to open small packaging or pill bottles. Oh and get this - chemo has made my fingerprints less pronounced - I know that doesn’t seem like anything much - but try opening a plastic produce bag with no friction in your fingertips. Bet you can’t do it. Oh and I’m always cold - like really really cold - like wearing double sweatshirts and fuzzy socks cold - I’m talking chills that last for days shivering down to my bones. Okay - here’s the grossest one. You know how babies get cradle cap? You parents know what I’m talking about. It’s not dandruff, it’s cradle cap - and when my hair grew back in, just like when a baby’s hair grows in - I got this one bad. Still working on the right treatment here - going with medicated shampoo, scalp scrubber, and psoriasis lotions. I complained about all of these things to my oncologist a few weeks ago when I went in to see him for my 3 month check-in and he said that was all normal part of the healing. That’s right - I’m still healing. I’m not all better now, but I’m also not considered sick anymore. It’s a very weird place to be. My oncologist said that a lot of his patients say that the post treatment is harder than the treatment and I completely agree. When you’re in treatment, there’s a plan, a course of action to get to where you need to go, a purpose for getting up each day and a reason to keep moving forward. You’re trying to get to that finish line - the end of treatment and the goal of being cancer free. But they never tell you what you’re supposed to do once you get there. Now what? What’s my purpose now? I’ve felt very lost and stuck in limbo for months just kind of waiting for the cancer to come back. At least then I would have a new journey and a new goal ahead of me. What’s the goal now? It’s such a weird place to be in this perpetual waiting. The fear that it will come back and the grief over the life I used to have can really take you down a dark hole. The world looks at you like you’re all better and can get back to life, but it’s so much harder than that. My body is weak and my brain is broken and I’m just so tired. The cognitive damage that my intense treatment did to my brain is something that I’m really struggling with. I stutter and stumble over words; I lose track of my thoughts before I can get them out; I have no recollection of conversations I’ve had just moment before; I struggle to multitask; If more than one person is speaking to me, I can’t decipher the words and it’s all just noise. It’s truly terrible to be able to remember a time when I was clearheaded and now I’m just all foggy. I know this is frustrating for my family too - my kids and husband constantly have to repeat themselves. I’ve resorted to saying things back to them the way I hear them in my head just so they can see I’m not ignoring them or not paying attention - I honestly can’t understand when there’s too much noise or they’re speaking too fast. I’m trying so hard to pretend to be the old Molly and hide how I’m struggling, but I also want everyone to know how hard I’m trying to overcome these challenges.
That seems like a good segue into my newest endeavor - I started therapy! I’m about a month in and it’s going great. It’s all remote, which is amazing, so we chat once a week for about 45 minutes and we’re working through all of this trauma and grief and anxiety I have. I’m learning new tools for my frustration and learning to accept my new self for what it is and not try to hide or be embarrassed. I’m learning that maybe I’m being too tough on myself and that all of the pressure to get back to normal is pressure I’m putting on myself. I’m learning that I need to celebrate the milestones and recognize how much progress I’m making and living in fear won’t change the outcome. I’m feeling more proud of myself and confident in my ability (even if those abilities look different than they used to).
I’m feeling more and more confident in my job as well. This is something I’ve been really hard on myself for. Since I returned to work in March, I’ve felt like I’m not pulling my weight and constantly dropping the ball and letting the team down - whether that’s true or not, that’s how I felt. Okay, here’s the truth - I started this job in January of 2020 and then in March we all went into quarantine and I had to try to do a job I barely knew how to do remotely. When I had to go on disability, it was kind of a relief because I didn’t feel confident in my role anyway. There was a part of me that thought, “well, I’m probably going to die and I won’t ever have to go back to work, and I guess that’s okay because I wasn’t any good at that job anyway.” Then I survived and had to go back to work and was overwhelmingly terrified because I had no idea what I was doing and now I’m returning to a job I don’t know how to do with a broken brain and severe fatigue. I can now say that I love my job and I think I’m doing a pretty good job at it. My team has been so unbelievably supportive and patient and encouraging. I feel so grateful to have been a part of this team through all of this and just so lucky that they seem to be happy with my performance. My career was always something that I worked really hard at and took a lot of pride in, and I was afraid for a long time while I struggled to find my footing after treatment, but now I feel like I’m coming back - getting into a groove, becoming more productive each day - even if that productivity looks a little different than it did a few years ago. Working from home is definitely a big reason why this transition back to work has been smooth. I’m able to go at my own pace, rest when I need to, step away to walk the kids home from school, and be comfortable in my slippers all day. I don’t take this job for granted. And I also know how hard I’m working - not just at my job but with everything.
That leads us to today. TODAY is my 1 year Remission Anniversary. 1 year ago today I sat with my oncologist while he showed me pictures of my 3rd PET scan showing no active cancer. 1 full year of being in remission. Wow - this one brings up a lot of emotions. Half of me wants to celebrate, and the other half is afraid that celebrating might jinx it. I don’t feel confident enough to say I’m cancer free. I don’t think I ever will be. The fear of relapse is so crushing, I don’t dare tempt the cancer gods by rejoicing just yet. Maybe when I get to 2 years. For now, I will acknowledge my progress, be proud of the changes I’m making, and keep living my life with as much love and fun and concerts as I possibly can.
