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"Post Chemo Cognitive Dysfunction"
I heard these words today, and I am floored by how life-changing they are. To have a name for something I have felt for the last 8 years of my life is so validating. I have been suffering in silence by something that is hard to even put into words, and to have someone tell me that there is hope that I don’t have to feel this way anymore, and that I’m not crazy, is beyond relief.
I went through a full hysterectomy and chemotherapy for stage 3 uterine cancer in 2010, when I was 40 years old. It was my impression that I would get through that, and that I could just get back to life as normal. I had 3 small children, and my focus needed to be on raising them. I sailed through all of my treatments with a winning attitude; I knew deep down to my tippy toes that I was going to be OK, and I’ve been given a clean bill of health ever since.
While going through my chemo, I experienced all of the side effects you might expect – hair loss, insomnia, bone pain, neuropathy, and the dreaded “chemo brain”. Before chemo, I could tell you every phone number stored in my phone – so silly that I had to put them in there, my mind was so sharp and numbers-oriented! I never had to keep a calendar – I could keep track of schedules for all 5 members of our family. I knew who needed to be where and what time – no problem!
Then “chemo brain” hit - I remember going to the grocery store because I needed 3 things – and I remember standing in the middle of the produce section astounded that I couldn’t remember even one of them. I remember not being able to apply for a Target Red Card, because I couldn’t remember the last 4 of my Social Security number. I remember being in the drive thru, and having trouble counting out change, and realizing that the cashier was getting frustrated with how long I was taking. I honestly thought that once I finished chemo, all of my sharpness and mental clarity would come back, and that this would be a distant blip in my history.
After being out of chemo for one year, I remember asking my oncologist about still feeling a little fuzzy. The worst parts of chemo brain were gone, but there was still the nagging feeling that I hadn’t really returned to normal. Nothing that I could really put my finger on; I just knew I didn’t feel quite “right”. He told me that really, once you’re done with chemo, the side effects will go away. Don’t get me wrong – I LOVE my oncologist! I still go see him annually to this day. At my 5 year benchmark, he told me I could return to my old gynecologist if I wanted, and I told him, “You’re not getting rid of me that easily! You’re stuck with me!” I found it interesting, though, that at that 5 year checkup, when I brought up the issue of long term side effects from chemo, his response was very different. He said, “We simply don’t know what all of the long term side effects are.” What a shift in thought, and so very true. Chemo is the best shot we have right now for treating cancer, but we really have not had long enough to figure out what happens in the long run.
After the first time I asked about it, I searched the internet for Post Chemo Brain Fog. It was hard to get any information, but I did find a few forums where other people were talking about feeling this way, so at least I knew I wasn’t alone, or imagining how I was feeling.
A lot has happened in the last 8 years – we returned to regular life, running after the kids, and making sure everyone was focused on school and got to all of their activities. The whole time I have mourned the person I was before, constantly questioning myself – why don’t I feel motivated to do anything? Why can’t I get my house organized? Why do I always feel like I have so much to do, but I couldn’t tell you what it is? Why do I lay in bed at night, kicking myself for all of the specific things I could have gotten done that day, but couldn’t think of earlier? WHY CAN’T I JUST GET IT TOGETHER?! It has taken a toll on my self-esteem in ways I couldn’t have imagined. This has all been going on as an inner dialogue for 8 years! When people I know read this, I think they may be shocked to know that this is how I have been feeling for so long. I put on a really good game face.
After battling mental health issues with one of my kids, and seeing her struggle to focus with her finally-diagnosed ADD, I started thinking about how much our symptoms seemed similar. My gut started telling me that maybe if I could just take some ADD medication, maybe my brain might start to feel clearer. However, my day-to-day need to manage my family and what they needed, made me push that aside for a long time. Recently, my other daughter was diagnosed with MS. I finally realized that if I really want to take care of my family, I need to take care of myself first. While at a visit with her nuerologist, I asked him, “On a side note – have you ever heard of post chemo patients having long term side effects similar to ADD?” He said, “Absolutely! But you need to start with your Primary Care doctor.” What a relief that someone didn’t look at me like I was crazy! So… off I went to my doctor, who ordered a bunch of bloodwork and a bone density scan to make sure that the things I was feeling couldn’t be attributed to something organic – like Thyroid or an effect of lack of hormones due to being thrown into menopause by my hysterectomy years ago. The type of cancer I had is fed by estrogen, so there was no treatment available to help relieve the menopause. In fact, another reason why I delayed getting help for so long was that many of my girlfriends said that they felt like they weren’t as sharp anymore. I don’t have a way to compare my experience directly with theirs, so I brushed my symptoms aside, thinking that it must just be what everyone else is feeling.
All of my current bloodwork and tests came back with flying colors – healthy as a horse! So… I still made an appointment to follow up with my doctor. I went in prepared for him to tell me – “Your numbers are all good – there’s nothing wrong.” To which I was going to say, “If you don’t feel prepared to help me, let me know, and I can find someone who will”. (I always have these great conversations in my head before I even go in and hear what they’re going to say! Haha) So he said my tests look good. I told him that I have lost 10 pounds in the last month, have started walking, and have tried cutting sugar out of my diet – all things that I know are supposed to help your brain function, but that I haven’t felt a difference. That is when he dropped the bombshell of the day! There is an actual condition – Post Chemo Cognitive Dysfunction. The fact that it actually has a name feels like such a godsend to me! No more random forums on the internet, with people commiserating together while their doctors can’t give them answers. It is real, and there is something I can do to try to help it. I have actually cried while writing this, because I can’t believe that there is hope for feeling better.
I have a very optimistic view on life – everything happens for a reason. Even when bad things happen, it must be a lesson my soul needs to learn in this life. Also, I absolutely believe that every challenge I have faced in my life (which usually have come at an earlier age than my peers), prepares me to help others through their difficult times. That is also why I believe in sharing my story. I find that it makes you feel less alone in your struggle, and it opens up the opportunity for people to come into your path, whether you are meant to help them or they are meant to help you. I hope that someone else might read this and not feel so alone, or maybe a health care provider might read this, and recognize a huge need in the cancer, or even more widespread, medical community.
Please, please, please! Learn to trust your gut! You know your body better than anyone, even doctors. If you have a nagging feeling, trust it and follow up on it. If you don’t feel right about the answer that one doctor gives you, move on to another. Everyone has different opinions and are good at different things. Trust yourself and you won’t go wrong.
