What Doesn’t Kill Us Makes Us Stronger, Dealing With Multiple Cancers

I think my journey through the world of “cancer” can best be described as exhaustion.  My path hasn’t been what you would think when someone mentions the word.  I haven’t been attached to an IV on a routine basis nor have I experienced too many invasive surgeries…note that I said too many.  

I guess it would be easier to start at the beginning of my adventure.  Yes, let’s call it an adventure.  

My name is Chelle, and I was at the orthodontist when I was a sophomore in high school and he noticed my jaw was swollen and started taking x-rays.  Long story short this led to an oral surgeon and an ENT examining me within a matter of a few days (or so it seemed) then suddenly I’m basically having reconstructive surgery on my face for what appears to be three baseball-sized masses that at least one of the doctors thought might be malignant.  Wait.  Did I fail to mention that the doctor who thought they might be cancerous tumors directed his comments at my parents instead of me?  That was helpful to a reasonably intelligent teenager!  

Fast forward to having my jaw wired shut for a month (in high school!) because the masses did internal damage to my bones and sinus cavities, but because there was no family history of issues like this I was not diagnosed and was told it would probably never happen again.  Um, five years later I could write a brief on “how I spent my Christmas break and my 21st birthday” and it would be very similar to my previous experience.  Luckily so far everything has turned out to be benign.  

As I got older, I ended up having two more facial surgeries and started getting masses throughout my body.  I ended up seeing my surgeons way more than I ever saw my general practitioner.   I was on the caseload of one orthopedic surgeon for eight years.  I think I ended up buying him a new Harley.  Still, I didn’t have an official diagnosis because the only thing the doctors could think might be a possibility required other symptoms, so I just kept having surgeries to remove masses and going on with life…still all benign.  Yay!

I’m a spontaneous mutant without any X-Men powers…because now it’s kind of everyday life.

Well, then I get this rash, at least that is the closest way to describe it.  It almost looked like chickenpox on my legs.  My dermatologist kept trying new treatments and investigating until he decided we needed to do several biopsies.  They weren’t benign and I was officially diagnosed with basal cell nevus syndrome (or Gorlin’s syndrome).  The masses and the newly acquired multiple skin cancers were explained, and it's been about 20 years since I finally got my “title.”

From there I have had more Mohs surgery than any one person should have…my face looks like railroad tracks…and has continued to have masses removed or monitored throughout my body.  I’ve been on oral chemo to suppress the frequency of the cancers three separate times off and on for years, and I’ve been involved in a clinical trial for topical treatment.  Oh, did I mention that I truly believe the person who decided on liquid nitrogen as a cancer killer was a masochist?  So, this is my life.  I live daily with cancers popping up, a mass currently in one of my lungs and others developing throughout my body routinely, and I see my dermatologist at least every few months with Mohs surgeries pretty much sprinkled in between.  

Yep, my journey can best be described as exhausting.  Now I’m considered what some might call a workaholic, and I work in a non-profit so that probably doesn’t help my stress level.  It gives me something to focus on besides the medical issues that also include a stroke last year (a result they think of hormone drugs since the previously mentioned masses resulted in a hysterectomy) and the current multiple month infection that caused acute renal failure in July.  That’s not to say I cope all the time.  I actually have a mental meltdown or two every year.  Everything in my life (or at least it feels like it) is connected to this genetic disorder.  Just yesterday I had another biopsy on my face…from my quarterly cancer check…and too many burns (actually freezes from liquid nitrogen but they look like cigarette burns) to keep count.  I already know that at least one more Mohs surgery will be happening before the end of the year.  

I do feel the need to add that besides the occasional meltdowns I try not to focus too much on my genetic disorder…which I didn’t get genetically; I’m a spontaneous mutant without any X-Men powers…because now it’s kind of everyday life.  I also know that what I go through on a daily basis isn’t as traumatic as someone who is receiving intense treatment in a shorter period of time, at least not from my point of view.  Yes, it’s caused some life-changing decisions but what doesn’t kill us makes us stronger, right?