It is now more than two years since I was diagnosed with cancer, soon I will reach the two-year anniversary of when I started and then finished chemo, and then started and finished radiation.
Most people assume, this far out, that I must be fine. Back to normal. Especially considering that I did not have a mastectomy, my surgery was pretty non-invasive, and I haven’t needed reconstruction or anything like that.
Unfortunately, they would be wrong. There are still lots of ways that I am not back to normal, not even close:
-Memory is shot. I lose and forget everything. Yesterday my iPhone was stolen because I forgot it in the table or in the bathroom at Starbucks. I lost the remote to our TV. I threw out an envelope forgetting it contained $500. Nothing happens without lists and reminders. Chemobrain is real.
-My eyes are a mess. I was reading about somebody getting laser eye surgery today (which I have always wanted considering I’ve worn glasses since I was three years old, but my prescription has always changed every year or two), and realized that my prescription has changed three times since chemotherapy, and I can already tell it’s going to change again soon. I’m pretty sure my dream of having laser eye surgery is officially gone. Maybe it wasn’t going to happen anyway, but after the way cancer treatment has impacted my eyes, definitely it isn’t.
-I have horrible insomnia. It’s not emotional it’s a physical/hormonal response to menopause (began immediately after the anesthesia from my ovary removal wore off). In the past when I had insomnia it was mainly emotional and I could deal with it with therapy and meditation and stuff like that, maybe a mild herbal medication or tea. Now, it doesn’t matter how tired I am or how relaxed I am or if I mainline chamomile tea, I simply do not sleep unmedicated. I alternate three different prescription medications, and I’m scared all the time of what happens when they stop working. Also needing medication to sleep is hard on my private life. I have to take it by a certain time to be not too groggy in the morning, but that means that my nighttime activities are pretty curtailed and I’m often passed out right around the time that I would like to start watching Netflix (or chilling). I don’t want to be addicted to sleeping pills for the rest of my life, but I also cannot let myself not sleep. I know other people that gone through this and have sucked it up, but I cannot. Not only is being sleep deprived miserable, my job requires a lot of driving and it would be dangerous.
-I cannot donate blood. I have always prided myself on someone who donates blood regularly. Now I cannot, for five years after finishing chemo. That’s very upsetting to me, it’s something that I’ve always believed in and love to do. It breaks my heart to see blood drives and things like that and not be able to participate.
-I have still not gotten my physical strength or stamina back. Sometimes that doesn’t bother me since I don’t want to work out as hard as I used to, but sometimes it does because I can’t even work out as hard as I do want to. I miss being strong and fit and I don’t know how I ever get it back. Sometimes it feels like it’s back on track, but then I hit a wall and spiral backwards and have to start all over again.
-My right shoulder and under arm have never recovered from my surgery. I have reduced strength and range of motion there. I know I should go to physiotherapy for it, but I’m of sick of appointments (and getting time off for them is not always easy) and don’t want to make any more of them. So I guess this is my own fault.
-Although I did not have a mastectomy, my right breast is badly scarred and significantly smaller than the other one. I have looked into reconstruction to get it fixed, but there aren’t any really great options for me so I just have to live with it. I’m lucky that it doesn’t show when I am dressed, but the reminder is always there in the mirror when I’m not.
-The fear of recurrence never goes away. It’s a permanent little pit of anxiety in my stomach that leaves me breathless with every new ache, pain, or mark. A few weeks ago my oncologist diagnosed eczema!
-Emotionally, I’m still a mess. I don’t know if it’s because of menopause, or because the trauma of having gone through cancer, or those combined, or those things combined with with some other craptastic things that have happened in my life over the last few years, or what, but I am more emotional than ever (and I have never been a particularly unemotional person). I feel like I’m in a constant state of PMS. I cry easily, I get angry easily, I am emotionally reactive all the time. I’ve pushed people away that I wish I hadn’t…and yet I have a hard time trying to pull them back, because I wish they recognized what a hard time I’ve had and cared about me enough to want to pull me back. It breaks my heart that they don’t.
I know people will read this and think that I’m just lucky to be alive, lucky that I was cured (at least for now), lucky that I kept my breasts. I get that; I am lucky. It could be far worse. However, that knowledge doesn’t make the problems I am left with any less real.