Journey With Sam

It has been one year since my last chemo treatment! I can’t believe a full year has gone by. I am so thankful and yet, it is amazing how much cancer is still a part of my life.

I started this blog to cover my cancer journey with the hopes of one day turning it more to travel and other aspects of life. I guess I figured I would finish my chemo and surgeries and then it would be time to move on….I wish it were that easy.

I joined a book discussion last month for Between Two Kingdoms by Suleika Jaouad. It is about her journey between two kingdoms…the kingdom of the healthy and the kingdom of the sick. She wrote an incredible memoir about her terrible fight with leukemia in her 20s. I highly recommend it but grab a box of Kleenex while you read it. She wrote so eloquently what most of us that have or have had cancer cannot express properly. She has a way with words and I found myself nodding and crying throughout the book. It a moving book and really got me thinking.

The book discussion was moderated by Ethan Zohn, Survivor winner and cancer survivor. He met Suleika at a First Descents adventure (more to come on that in a later blog when I hopefully get to go on an adventure). Both he and Suleika went through hell fighting cancer and requiring a transplant. Both of these individuals are incredible for speaking out and addressing the young adult cancer community. The thing that struck me the most was “How can we help the community” and the response was “Be honest”. It doesn’t help to put on a brave face and reflect something that isn’t true. So I am taking those words and the concepts from the book to address some hard topics.

Beating Cancer

I know I have written that phrase several times. It sounds better than being in remission or no evidence of disease. It has a finality that is amazing. But the truth is, the fear of cancer doesn’t go away. The truth is that there is a chance (a much higher chance than we like to think about) that it can come back.

I remember driving back to Colorado after Christmas 2019. I had finished 2 chemo treatments and shaved my head by then. My mom had grabbed the Christmas cards they had received to read in the car. She opened Cindy Kahl’s (my high school volleyball coach’s wife) and started to read it out loud. Then she stumbled as she hit the portion about Cindy’s daughter Heather losing her life to breast cancer. Heather had been healthy and in remission, but it came back and took her life. I remember crying while driving because first off, she was an incredible woman that should have had a long life ahead of her and secondly, because the disease was even more real.

Around that time, my friend’s sister’s cancer came back. Michelle had been in remission from breast cancer for about 5 years and it was back and in multiple locations. She is still fighting metastatic breast cancer a year later and probably will be fighting for the rest of her life.

Then you find out several friends’ moms have breast cancer again. Then you read in your support groups about how many people are fighting it again for the second or third time or now have metastatic cancer. It seems the “good” survivor stories are gone and all you can hear is everyone getting sick again.

Then you turn on the tv and suddenly you notice there are 4-5 commercials about drugs for metastatic breast cancer. I am thrilled to hear there are drugs to help, but I feel a twitch every time I see these commercials because I know I could potentially need these drugs in the future. I probably never paid attention to them before, but now it is a warning of what I might need if my body turns against me again.

You start to question everything that is off. You usually feel tired. You aren’t getting in better cardio shape regardless of what you do. You question if the implants look strange in any way. You worry when you are not getting as many hot flashes because maybe the drugs aren’t working as well anymore. Your mind and body want to move on from what you went through, but sometimes they just can’t. I visit the oncology office once a month to get a shot and sit in the same treatment chairs I was in a year ago. I look around and realize how lucky I am, but there is always a small part that is scared I will have to go back to those treatments.

There is no moving on from cancer. It is learning to live with the experience and limiting fear for the future.

Guilt

Honestly, I feel guilty that my body handled cancer as well as it did. You read stories like Suleika’s and can’t believe the hell they went through. I feel guilty that I went through an easier fight. I didn’t have marathon chemo sessions, radiology, transplants, and more. My body responded to chemo relatively well and the surgeries were annoying, but I have finally healed from them. My life didn’t turn upside down. I worked mostly normal hours through chemo and surgeries. If I hadn’t lost my hair, I probably could have kept the whole thing a secret and only my close friends and family would have known or noticed. I feel guilty that I can be a “cancer survivor” the same as those that have fought for years.

I feel guilty that I am still angry about losing my hair and breasts. People lose their fight with cancer all of the time. People lose jobs, relationships, money, and so much more that are incredibly hard to replace. My hair will grow back (even if it is brown instead of blonde). My breasts are gone, but the implants are a pretty good second option (I mean people pay for these all of the time).

I realize that I am a cancer survivor and it is ok to feel angry about my losses, but sometimes it just feels like I got “lucky” and should suck it up and move on.

Missing it

This emotion has baffled me the most and I like to blame it on COVID. I miss treatments. I miss interacting with the nurses every week and getting to know them. I miss the battle with cancer. My whole focus for almost a year was to get through it. I had a clear purpose on getting through my 3 steps: chemo, mastectomy, reconstruction. I had dates for every treatment and surgery from November through August and those dictated my life and schedule.

I compare this to a big event whether that be a wedding, Ironman triathlon, vacation, etc. You plan and prep for months, even years for these events. You dedicate a lot of time to this one goal and it becomes a driving force. Then the event comes and goes and there is a let down. You had a great time and finished what you started, but now what? What do I do with the time I had spent planning or training? What is the next goal?

Cancer is sort of like that. You dedicate everything to beating the disease and then it is gone. You spent a year or more focused on being healthy and then what? I think it is even harder with COVID. Those of us who finished during COVID haven’t really had time to move on yet. We, like the rest of the world, are still struggling with the return to “normal”.

How Am I Doing?

All of that being said, I am doing well.

My body is accepting its new “normal”. The implants no longer wake me up in the middle of the night when I roll over. My scars are think, but mostly hidden. All three doctors have commented on my body’s ability to make scar tissue and I am pretty sure that is not a compliment. I am jinxing myself, but the hot flashes have been more manageable lately and don’t wake me up as much anymore.

My hair is growing. It sounds vain, but I really miss my hair. I miss the feeling of pulling my hair into a ponytail. I miss it being blonde. It is so dark now. I still find myself looking into the mirror and sighing. It will continue to grow and eventually, I will get my ponytail back. Until then, I will enjoy the ease of getting ready with short hair.

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I exercise all of the time again. I am not getting in better shape, but I am able to at least go out and enjoy myself. Eventually I will see gains in cardio, but until then, I remind myself to be happy that I can still get out and run, hike, paddle, and more.

I will also get my 2nd vaccine next week and I cannot wait.

Thank you science for developing ways for my body to fight cancer and COVID.