The Truth About Chemo

 Surprisingly, I've recently found that social media has really helped me feel less alone as I navigate the world as a cancer patient. I feel a little bit less alone just by writing and putting my thoughts out there.  People read my story and take in the pieces.  People are with me, present with me. 

Lately, I've been worried that my "life with cancer" looks too exciting or glamorous (not sure what word I'm looking for here), which I'm sure sounds like a strange fear to most people.  However, I DO tend to write about the good stuff, the joyous stuff, and the hopeful stuff most of the time.  The truth is that living with cancer  and going through chemotherapy is very hard most days but I do try to find the good stuff tucked away in each day.  My experience undergoing treatment has been exhausting, terrifying, painful, and brutal. I try not to focus on those parts but sometimes I need to honor, validate, and trust that those parts carry me and build me up in powerful ways, just as much as the good parts do.   

I just got off the phone with my oncologist.  I have oral thrush again, which shouldn't make me feel shameful, since it's quite common and not preventable, but it's annoying and I wish I could make it go away quicker.  It makes my mouth taste horrible and I have serious empathy for babies who get it often.  Lately, people have been asking me what it's like going through chemo. While I'm know it's different for everyone, I wanted to give people a glimpse at what it has been like for me. 

Day 1: Treatment day is usually the worst.  I go in feeling great and leave with extreme nausea, fatigue, and chemo brain.  Janelle and my mom help make the day go quickly with TV shows, conversation, photo collages, and napping but it's still a pretty crappy day with some good moments thrown in (like pictures and videos of baby friends). I take 100mg of prednisone from Days 1-5.  It's horrible.  I'm now able to swallow it by covering it in a thin layer of fruit roll-up.  However, it eats at my stomach and makes me feel all revved up.   

Chemo #4: the bird socks with my "cute and qualified" chemo nurse

Day 2: Janelle has to go back to work, which is very hard for both of us.  My mom and I usually head down to Westport, since being by the ocean brings me some relief from my symptoms and Janelle has her late day on Tuesdays anyway.  Emme, a dear friend, has a family home in Westport.  Her parents have generously opened their door to us whenever we need some ocean beauty.  I take two very expensive nausea meds for the first three days to help keep it in check, but sometimes I add in one or two more additional meds if the nausea is really bad.  My mom and I usually go on walks by the ocean, work on a puzzle, nap, and Facetime with my Dad and Janelle.  My face usually puffs up and I have something called "chemo flush", which makes my face and chest all red.  

Day 3 -5: Continue taking prednisone.  Maybe stay in Westport for another night. Dealing with insomnia, nausea, and joint pain. 

Day 6-10: My blood counts are low so I'm very prone to infections and I usually experience whole body fatigue and soreness.  Some of this is due to prednisone build-up, prednisone withdrawal, and then the rest is due to all my other chemo meds.  I call these days my "molasses days" because to walk it feels like I'm fighting through molasses.  It's exhausting to do most things but I usually try to plan one thing to look forward to on each of these days.  Then, I sleep most of the day until I do that one thing. 

Day 11 -21: Life feels more manageable now.  I start feeling better and there's a light at the end of the tunnel.  My blood counts start going up.  I can be out and about in the world without worrying too much about infections or side effects getting me down.  These are the days that Janelle and I go see live music, take trips, play with babies, have company over, make meals with friends, and enjoy all that nature has to offer.  Mind you, I'm sleeping around 10 hours a night and taking a 2-3 hour nap most of these days.  

I'm told by other cancer patients and repeatedly by my oncologist that my fatigue and energy level will continue to get worse with each cycle.  So far, I can already feel a difference between this 4th cycle and my last one. 

I know it's been somewhat strange for the people in my life to comprehend what going through chemo has been like for me. I don't like to dwell on it or talk about it tons.  When my colleagues and friends see me for brief visits or outings, I usually look pretty good.  And for the most part, I feel good when I'm with them.  I have good energy and truthfully look like I should/could be working or up and about more. Cancer treatment can be deceiving that way.  Every day looks and feels different.  Certain days I feel like my old, normal self (except I sleep a lot more). Other days, I feel so far from my old self that I'm not sure how I'd ever get back to her.  

Writing has become a refuge for me in a way I didn't expect.  While I feel very vulnerable putting my words out into the world, it's comforting to know that the people I love and care about read my precious words and take them to heart.  Thank you for listening to MY truth about chemo.