Welcome. Let’s get right into it. This is the second part of I Beat Cancer, So Let Me Live, an interview with Gina Spence, (one of the strongest women I know), about her experience being diagnosed with stage 3 nodular sclerosis hodgkin lymphoma, being cancer free for six years, how she wishes everyone would leave her alone about it, and just, ya know, let her live.
Well, not in those words exactly. But she does want to help debunk the stereotypes that most people living with cancer and those in remission (like herself) face.
This is part 2.
What events made you come to the realization that you don’t owe anyone the comfort of fulfilling the status quo? (Spewing rainbows 24/7 because you survived)
I realized parts of it when I noticed vast differences in how other people viewed my post-remission PET scans and how I viewed them. For me, the thought that I potentially could have had a recurrence was both anxiety producing and protective. On the one hand, I absolutely did not want my cancer to come back, but on the other hand, I felt that if I prepared myself for the worst, I couldn’t be surprised by the results. I know this sounds bleak, but it served a purpose. I think I would be absolutely crushed if I went into post-remission PET scans thinking I’d be fine and then be told I wasn’t.
There were some who thought this was overly pessimistic and I was choosing not to be hopeful about my future, but I felt that they were misunderstanding where my intentions were placed.
While I try to see the brighter side of things these days, I still have a bit of a cynic and realist in me. Sometimes, I feel it’s important to point out that post-remission can be scary and it’s not all hope and cheer. Even though I’m 6 years in remission, I still feel my blood pressure rise when I have an itch I can’t explain, if I feel feverish, or overly tired. And I think it’s important that those feelings not be minimized and that people understand where those feelings come from – which is fear that the cancer is back. It’s my hope that sharing those thoughts that people understand why I don’t always talk about feeling hopeful and thankful. I think it’s okay that cancer survivors feel anxious and scared sometimes – it’s a normal reaction to a life-threatening thing.
I definitely feel there is this societal pressure that says stay positive no matter what
What kind of pressures do you feel or have felt from friends/family/peers at school/people in general post cancer or even during?
I definitely feel there is this societal pressure that says “stay positive no matter what.” I sometimes wonder if this is because cancer survivors who aren’t always positive make others uncomfortable. I don’t mean to say I would have rather been all “doom and gloom” all the time, but it would have been nice to feel like I could have talked more openly about some fears and anxiety.
Another message I feel like I got a lot was that I wasn’t allowed to be sad about losing my hair because, after all, it’s just hair and it’ll grow back. This one was very hurtful. I’ve never worn makeup (I have nothing against it though, just personal preference), so I feel a lot of my identify as a woman is tied to how I choose to wear my hair. Cancer already had affected so much – my ability to be out in public spaces, my health (physical and mental), my social relationships – so it felt like the straw that broke the camel’s back when my hair started falling out.
I wasn’t allowed to be sad about losing my hair because, after all, it’s just hair and it’ll grow back.
I knew it would grow back, but that didn’t help the fact that it was gone. And it wasn’t just my hair, it was eyelashes, eyebrows, nose hairs, everything. Hearing that one day my hair would eventually grow back didn’t help the fact that not only did I have cancer, but I also felt de-humanized.
How has your faith changed since cancer?
This is possibly the most difficult question to answer. I really, really wish to say that I came out of my cancer experience with a strengthened faith. Honestly, this is one of the things that I talk about the least when I talk about my cancer experience because I don’t want to be judged my friends/family/peers belonging to the same faith community.
I feel that I pulled back from both God and the faith community during my cancer experience, and I also feel the faith community did the same.
Truthfully, I felt spiritually alone. Mother Theresa once described an experience she had where she felt God had become silent to her, and she described this as “a dark night of the soul.” I do not mean in any way to compare myself to her, but I felt I could relate to that feeling. I feel that I pulled back from both God and the faith community during my cancer experience, and I also feel the faith community did the same.
However, I also do not feel totally disconnected. I remember an experience I had one afternoon after a post-remission appointment with my oncologist. I had developed something called “Sweet Syndrome.” My doctor was fairly certain that it would clear up with some steroids, but also that we needed to watch it in case it was a sign that I had developed leukemia (“which doesn’t play as nicely as Hodgkins”). We would do another PET scan in 6 months to make sure.
Of course, I left that appointment horrified that I had leukemia. I had driven myself to that appointment, so I had a two hour drive back by myself. It was pouring down rain on the highway and I was a crying mess. About half way into my drive the rain had cleared up and there was a beautiful rainbow that appeared. Out of seemingly nowhere, I felt an incredible wave of peace wash over me. I can’t explain it much further than that, but somehow I knew it was a sign I would be okay, and I was.
Since then, I try to connect more personally with God than publicly (i.e. attending a church), and I know this philosophy tends to rub some the wrong way. I try to practice graciousness with myself and accept myself where I am, and I hope God does, too.
Written by Teresa Johnson