Yes, I am the mother of a cancer warrior and survivor.
This is My’isha. She was around 17 months when she was diagnosed with stage 4 high risk neuroblastoma. I stood by her side, solid as a rock. I didn’t want her to see me cry, but I couldn’t leave her side. It did not take me long to adjust to this new life. By the time her chemotherapy was done. I was able to leave to take care of other things, like my other 3 kids. I even started working for a local radio station doing promotional work while she was sleeping. I was able to be the rock I needed to be for my baby girl to get her through cancer. We sang and danced and smiled through it all. After a year and a half of treatments including radiation, surgeries, antibody and immunotherapy, My’isha was declared NED (no evidence of disease).
Here I am over 2 and a half years since diagnosis and over a year after treatment. My kids are all healthy. I am back in school and able to stay at home with the kids during the week because I have a great man in my life who works hard for us to be together.
I waited a year and a half for my daughter to have her health, and 13 years to able to stay home with my kids, however, I am a depressed mess. I am in the worst mental state I have ever been in, in my life. All of the coping skills I had used throughout my life were becoming less and less effective over a period of a few months. I was not able to enjoy my daughter’s Make A Wish trip because of anxiety and the complete inability to sincerely enjoy my time. I knew something wasn’t right when I looked at my oldest son Alijah, and he was acting like me instead of like a kid at Disney World.
My depression was rubbing off on my family and taking a toll on all of my relationships. It took me months to get the help I needed. I promised I was going to get help when we came back home from Florida. I said I was going to get help when I wanted so bad to run away, that I was searching frantically for somewhere to safe to drop my kids off so I could disappear of the face of the earth. My boyfriend called my mom thinking I was suicidal. I was having a panic attack and had to pull over with my babies in the car. I didn’t actively seek help until I tried to take the kids to Six Flags. It was no better than Disney World, and ended much worse. I had the worst panic attack ever that night.
I was so scared, that I HAD to go talk to someone. So, I went to talk with a therapist. It was nice to have someone to talk to, but I was still have crying spells. I was finding it difficult to cope with normal life the way I used to, and having difficulty doing things like pick out my clothes for the day or going to the grocery store without being on the verge of tears. I still was not able enjoy doing the things I have always loved to do.
I reached out to some mommy’s in a support group on Facebook. I was surprised by the number of moms that commented with similar experiences. There were mom’s talking of PTSD and anxiety and depression and I just cried.
Who would have thought that your child SURVIVING cancer would have such an effect on us. I really felt kind of ashamed. I mean I know plenty of mommies that lost their child, and they just have been so strong. Why am I struggling so hard with this?
Well, because I am the mommy that I am (Not typical of course), I had to do some research. I mentioned the Facebook conversation to my therapist. She was actually a little set back that we were able to make the connection between the trauma and trying to readjust. I had never looked at what My’isha and I were going through as trauma. I just knew that everyone around me including my mom were having a harder time with the situation than I was. I didn’t realize how strong I was being.
I have found a couple of articles about PTSD in parents of cancer survivors. It is a REAL thing. There have only been 1 or 2 actual clinical studies done about us, but the results all point to the fact that parents have endured the trauma of cancer in their child. Once the trauma is over, at some point down the road, we experience a mental change. For some, it is constant worry of possible relapse. For others, it is battling with readjusting to taking care of ourselves and our families instead of being a cancer mom.
Taking what my therapist has told me, my knowledge I already have, and some of the new things I have learned through reading about this topic, I think I have an idea of what has happened to my brain. Don’t expect this to be scientific by any means, but I will try to explain how my “Joy” has been broken.
So my therapist explained to me that there are neurons in our brains that trigger one way or another based on our emotions towards a situation. She had also told me that I needed to retrain my neurons in order to gain control of my thought errors. How could this have happened though? I was so strong through cancer treatment. We played, we smiled, I slept, I took breaks. I did exactly what they recommended I do.
The problem was, I was retraining my neurons to be happy and smile and sing, through what should have been, some of the saddest and scariest moments of my life. I trained my brain to be happy for my daughter and my family. I had no time for sadness or fear. So, if my joy and happiness was running my brain for over a year and a half without a significant vacation or letting another emotion fill my bucket, like anything else, it will run out.
My joy wasn’t able to let me enjoy normal things in life. I wasn’t able to enjoy Disney World, Sea World, or anything else I normally would have enjoyed. My brain and my emotions all need to be retrained and I need to fix my happiness.
I stopped smoking weed when my daughter was diagnosed with cancer. I picked it back up a little while into treatment. It might not have been ideal for all parents, for me, it helped me relax when I needed to get rest and eat when I needed to eat (those are my 2 biggest issues anyways, but that’s another post). I wasn’t a big drinker at the time, so that wasn’t an issue for me. Although I did drink from time to time at events and such. Alcohol was too inhibiting for me to do my job of cancer mom the way I wanted to.
I remember seeing “that mom” in the family lounge, more than once, an intoxicated emotional mess. I felt so bad for her. I saw other mom’s that were zoned out or hyped up on medications or what not. I always felt a little stronger than that. I also saw those mom’s that had it all together. They were able to continue working and had the rooms all set up and they were at all of the events. I strived to be more like “that mom”. Although I smoked marijuana on my breaks, I impressed the doctors and nurses with my knowledge and organization. There is a chance that everyone knew I was the pot smokin’ mommy, this is Colorado.
Things are different now.
I still smoke marijuana, but I have to be very careful and more aware about the strains I choose and intake method. I also started drinking more. I have a hard time sleeping through the night without waking up with anxiety, and by more, I mean I drink pretty much every night. I know that isn’t a lot to some people, but for me, it is a big difference, and yet another reminder that I am not quite myself. I have also been prescribed an anti-depressant. I am still in my 1 month trial, and I must say, I haven’t had a crying spell or panic attack since the first week I started the medication.
Obviously, the hospital moms I remember back at the hospital, were coping how they needed to at that time. I am not trying to judge. Perhaps they are the ones that were able to move on with life after cancer, while I am still trying to put myself back together. I mean every mom needs to break down at some point if their own child has had to fight for their lives, right?
I wanted to share a couple of the resources I found in regards to PTSD in parents of cancer survivors.
This is an article in Journal of Pediatric Psychology: http://www.researchgate.net/profile/Anne_Kazak/publication/8574893_Posttraumatic_stress_disorder_(PTSD)_and_posttraumatic_stress_symptoms_(PTSS)_in_families_of_adolescent_childhood_cancer_survivors/links/5457a9a10cf2bccc491112ab.pdf
I encourage all parents to speak to a therapist after treatment is over or earlier. I think although we do our best to create a “normal” post-cancer life, we have to remember that our minds will also need to adjust to life outside of cancer. I really did not think the transition would be so difficult. I figured once we beat cancer, we would be home free. I know the reality is that neuroblastoma can show its face again. I know that My’isha is at a higher risk of secondary cancers and health issues due to treatment. I did not expect for me to need the help I need. I hope I have shed some light on either how you are feeling, someone you know are feeling, or just better prepared you for future possibilities.