“Hopefully, my story shares some insight or at least a peek behind the curtain of the plight we long-term survivors face in everyday life.”
Everyone’s experience with pLGG is unique and will vary from individual to individual.
Lives with pLGG, Lives for the outdoors
I think that now there is a lack of examples of the personal experience that we long-term survivors have from our own point of view. Hopefully, my story shares some insight or at least a peek behind the curtain of the plight we long-term survivors face in everyday life.
Facing a pLGG Diagnosis
I was a mere child when initially diagnosed. However, during my third and final bout with cancer, I remember thinking to myself, “Great, here we go again.” I didn’t think of all the ramifications that another recurrence brought in my life, but I was only 7 years old at the time. The most impactful thing that I could think of at the time was that missing school and hanging out with friends was going to really suck. I wanted it to be over as quickly as possible, to be able to resume “normal” life.
A good day was when I was able to socialize with family, friends, or hospital “buddies”; those were the days my immune system was on the up and up. Fortunately, children’s hospitals always seemed like a safe haven to me, their space was so well thought out for young children that the memories I have are almost all positive.
A bad day was one where I was immunocompromised and had to stay in the bed the whole time. At times, I couldn’t even get up to go to the bathroom. That was probably the worst of it for me—or a day when I was only able to eat the hospital-provided food: “If the cancer doesn’t kill me, this food definitely will,” was a constant thought of mine.
The Treatment Journey to Today
Chemotherapy helped with the cancer itself, and thank goodness my parents decided to opt out of radiation. Had I done radiation, the negative side effects would have been much more pronounced.
Nowadays, I go to my appointments alone. I make sure to write down any questions I may have on my phone in the weeks leading up to my annual check-up. I always ask if there are new studies or advancements for pLGG. I bring them up to speed on any/all of my hospital visits or any specialists I went to see during the year. I am transparent about anything I find out of the ordinary. I always get the tests they recommend done.
I love sports and outdoor activities. Rugby and football (soccer) are my go-to sports. Now that the weather is getting colder, I prefer video games, reading, and other indoor activities.
I want to help the US with its plethora of issues by being more involved in my community and advocating for the right causes.
Who is my hero?
This one is a hard one. I think that there are many amazing, well-known people that I have been able to learn from: Nelson Mandela, Nicholas Winton, Mr. Rogers, Sergio “Maravilla” Martinez, Christian Von Koenigsegg are a few that come to mind, each for their own unique reasons.
Thoughts for Others
If I had a magic wand to change pLGG, what would I do? Erasing it is out of the question, right? I guess, to make sure that everything (the diagnosis, treatment, prognosis, etc) is explained appropriately depending on the age of the patient and with an empathetic approach to the parents. The worst of news, delivered with great empathy and understanding, makes it a much easier pill to swallow.
I remember being told, “Just a little bit longer,” and that always felt reassuring at the time. If I could go back and tell my younger self one thing about pLGG, I would say think of it as a game, and that I was going up against an enemy, and I just had to stay strong to defeat him/it. Again, I was 7 at the time; to a young adult that advice would change.
pLGG is a cancer that is life-altering. It will have immediate repercussions that will be obvious to spot (a disability, physical changes, etc), but the long-term effects that this diagnosis brings with it should not be overlooked or dismissed. Those effects may be more subtle or take a longer period to show symptoms (the psychological effects). But when they do start appearing, it is incredibly important to show the person how to push through these changes. Because these effects are out of our control, we may feel powerless to them. The support we receive while dealing with these changes gives us the strength we need to deal and adapt to them.