When I finished treatment, I was surprised at how quickly my systems of support went away and how little advice there was on how to get my life back on track. It felt like my doctors and nurses simultaneously disconnected the pump and pulled the rug out from under me. Within a month of finishing my 40th round of chemotherapy, my white blood cell count had begun to stabilize and my oncologist said I was fit to return to work, even though I still suffered from a giant list of side effects that were physical, mental, and emotional. It felt like “getting back to normal” was expected since the chemo was done, and that I should be back to my “normal” routine. I often had people ask me why I wasn’t working or why I still needed to talk about cancer. Now, since connecting with more survivors, I have consistently heard talk of PTSD and side effects lasting for years, some even beyond 10 years. I didn’t want this to be my story, so I went searching for any way to get myself feeling normal again.
The single biggest change that I made that has benefited me in recovery is the understanding that the “normal” I remember was no longer possible and I had to give up trying to make that my goal. I had to stop comparing where I am now to where I was before treatment. More importantly, I had to give up the idea that where I was before treatment was the goal I was trying to reach. I have learned and grown so much since my diagnosis that I would be moving in reverse to make that my goal. I had to stop focusing on what I had lost and on my limitations and instead focus on healing and learning from my experiences. I gave up comparing myself to how I was before treatment and began to compare how I was a week or a month before. I began to celebrate the little successes and let go of whatever failures I was feeling. There are, and will continue to be, a lot of both.
I had to learn to embrace who I was now. As much as I didn’t want it to be, cancer was now a part of me and would continue to be even long after the tumors were removed. I have heard that time heals all wounds but so many of these wounds still seemed very open and sore. I needed to discuss and process it all in order to release the pain and shame. To me, this felt just as important as any other kind of treatment I had been through. It was as if chemo and radiation cut me off at the knees to keep this disease from spreading throughout my body but I still needed to learn how to walk again. The fact that post-treatment care wasn’t even mentioned by my oncologist besides taking prescriptions may be the most insane part of cancer treatment and talking about it now is a huge reason behind why I wanted to start this blog in the first place.
I had a hard time with chemo fog and, coming from a career that depended on the ability to make quick, clear decisions, I felt useless. I also didn’t feel like I could hold a conversation as well. I worked very hard to still be able to communicate well but it was difficult and stressful. I hid it as best I could but I would get exhausted just trying to keep up with people were saying to me. I would make jokes about how forgetful I was to make it seem like it wasn’t as big of a deal. Having the ostomy bag made me feel disgusting and uncomfortable to be out in public and, even after it was reversed, I had so many digestive and bowel control issues. For more than a year and a half after it was reversed I shit my pants more nights than I did not. I had lost over 30 lbs and, even though I had begun to put weight back on, I was still much smaller than I was before and felt frail. All of this culminated in me losing confidence and feeling flawed. As I learned more about the power of the mind and that focusing on these things was torturing myself I decided to change my perspective. Instead of feeling weak for what I had lost, I felt powerful for what remained. I am reminded of Tupac’s “The Rose That Grew From Concrete”.
“You see you wouldn’t ask why the rose that grew from the concrete
Had damaged petals.
On the contrary, we would all celebrate its tenacity.
We would all love it’s will to reach the sun
Well, we are the roses - this is the concrete – and these are my damaged petals. Don’t ask me why, thank God, ask me how!”
As I have continued to heal there are certain times that I am immediately thrust back into the reality of what I’ve been through. While traveling in Bali recently, I got an email from a company who took my blood a couple years before to see if I would match with someone who needed bone marrow. I received an email and also a package at my home in Austin. I immediately called them and asked how I could help. I said I was in Bali but I could find a hospital here. Would it be able to ship that far? Would it take too long before they could receive it? Then I mentioned I had cancer the year before. They said, “oh, well you will have to be removed from the list forever then.” I was not expecting that news to hit as hard as it did. I felt poisonous again, as if my body wasn’t good enough and forever flawed. Luckily I was aware of the negative speaking I was doing in my head about myself and I knew the hole I was about to climb in and I stopped myself. I went to eat with a friend who was very supportive and got me feeling more positive. I knew situations like this would continue to come up so I needed to redirect my focus. This is when I knew I had to start looking at all the different ways I could help now that I couldn’t before and forget about what I wasn’t capable of anymore. That constant comparison was robbing my ability to be happy.
Outside of other cancer survivors I found comfort and connection with elderly people. I like to call the struggles that go along with cancer as “Grandma Problems”. I had so much more in common with them than I did with people my own age and could gain so much wisdom and perspective from them. Think about it, you wake up in pain, have odd side effects that come out of nowhere that you aren’t sure if they are normal or life threatening, you feel like the doctors don’t listen to you, your friends (other cancer survivors) can get a new diagnosis or pass away, you struggle with understanding insurance and what they will and won’t cover, simple things like driving and making decisions are more difficult, you feel physically weaker than you are used to and the list goes on and on. It made sense to me to speak with them to get a perspective and wisdom on how to handle all these new struggles. One thing you will always find when you talk to someone elderly is they will say “I wish” at some point in the conversation. I wish I would’ve worked less or worked harder, spent more time with my family, traveled more, worried less, etc. I felt like I had a second chance that they did not. I wanted to live my life going forward in the way you would if you had your life taken from you and then had a second chance to do it right.
I was trying to figure out what I wanted to do after I was done with treatment. I did a lot of people watching to figure out who I would want to be like, at first. What I found was that I didn’t know a lot of people who were truly, deeply happy. I saw a lot of people who had many instances of being happy but not many who were truly happy and content. I started looking at what job I could get. I thought with my experience in the oilfield and some training I had done I could look at joining the fire department but I knew I would just be changing the job title and still keep all the stress that I had from my previous jobs. I decided I wanted to leave and search for true happiness. To me, if you have a healthy body, a clear mind, are in control of your emotions, surround yourself with positivity, and do something fulfilling, you will be happy.
The closest I had felt to that kind of happy was when I went to Thailand to clear my head before my first set of surgeries. I left one day from Suan Sati, the yoga retreat I was staying at, and borrowed a scooter and got lost at the base of the mountains. I looked up and felt true happiness. I had an ear-to-ear grin and I did it with no one looking. It lasted maybe 30 seconds and that’s all I was going off of. I remember that feeling and I was in search for how to make that last longer. I sold off most of my belongings including my truck, rented out my house, and set off for Thailand. I refused to let cancer be something that left me feeling crippled physically and emotionally years later. I had some fight left in me and I was feeling stronger every day. I could feel this strength in me and was ready to face whatever came, embrace whatever helped, and let go of whatever was holding me back.
A lot of people didn’t understand or thought it was irresponsible. They would ask me why I was leaving and I said that I wanted to be happy. I had one friend who responded by saying “you know, it’s not all about being happy”. I knew I was on the right track not listening to this advice, even if it was with the best intentions. I have learned that it’s not my responsibility to make others feel comfortable or to understand. I needed to stop worrying about how others perceived me because I was doing what felt right for me. I gave up feeling bad about saying no or doing things to take care of myself that they didn’t agree with. I had to learn to be comfortable being with myself. I had to make decisions that I felt were the best for me and stand behind my decisions even if others did not.
I know a lot of people aren’t in the position to up and move to another country to do some soul searching, but there are so many little changes you can make in your life that make a huge difference. Making time every day to meditate or do something that clears your mind, making sure you are surrounding yourself with people who are uplifting, finding a community of people who have been through a similar situation where you can share your experience, and volunteering or giving back in any way to those who are still in the middle of treatment, are all things that you can do now. All of this can be very therapeutic and help to heal not only your body but your emotional wounds as well. Helping others can help you to make sense and bring purpose to what might be an otherwise very negative experience. No one thing will make you feel whole again but finding the right combination that works for you that you feel passionate about will make the healing process faster and more enjoyable.
You have to be aware and honest with yourself about how you are feeling and what you need. Do not latch on to an idea of who you are. Don’t feel the pressure to get back to what you were like before your diagnosis. You have had every part of who you are disrupted and altered. Trying to become the person you were before a diagnosis is as easy and logical as trying to be exactly like someone else. Take the time to really ask yourself how you feel about things. Do you really want to go to this activity? Do you really want to hang out with these people? Are these daily habits you have helping you or are they just something you have always done? When you give your opinions, ask yourself if this is how you still feel or if this is just what you have always said before. Be OK with change and welcome it. There is no sense in resisting it.
This will be a topic I will touch on much more often. I felt completely clueless and terrified of what to do after I finished treatment. This lack of information post-treatment care is one of the biggest reasons I wanted to start this site. Topics from deciding when to return to work, when and how to start dating, how to express emotions, how to deal with others reactions, figuring out who you are now, fears of cancer returning, and so much more to come.