How do you start a blog about melanoma?
Should I start with some words of wisdom? I guess I would if I had some.
Should I start with facts about melanoma? I would if my brain wasn't overwhelmed with them.
Should I start with my story? I guess that's the easiest, least emotional way to start this party.
So, here's my story. I'm 40. I have two wonderful, beautiful. amazing, bilingual children. (More on them later). I'm married to a man whom I still wonder how I caught. I'm a second year elementary teacher who knows she's lucky to have a job in California education right now. And now I'm a cancer warrior.
I can't say that I'm surprised that I was diagnosed with cancer. It's the only thing my family, that I know of, has ever died of. Really! We've avoided murder, car accidents, heart attacks and everything else. I thought my Grandfather might be the first to actually live past his 60's and not die of cancer. Unfortunately, it came back and got him in the end. Luckily, it was round 2 that got him at 82 years old.
My family has had:
breast cancer,
colorectal cancer,
jaw cancer,
throat/palette cancer,
prostrate cancer, and
of course, skin cancer.
And this is with limited knowledge of my birth mother's family history. Sure makes you want to join my family doesn't it? So, I never underwent testing to see if I had the "cancer gene." I know I have it.
In light of all of this somewhat limited history, I go in for regular OB/Gyn visits and I've already had a mammogram in my 30's. I had 4 skin biopsies about 3 years ago. I don't smoke, so the jaw, throat cancers are not a huge concern. And then I noticed another mole that didn't look quite right. That's what started this journey.
I went to my primary care physician for the dermatologist referral since it'd been more than a year from my last visit and my insurance requires it. It took me 2 months to see him. I told him why I was there and what I needed. He looked at the spot in question and said, "This one?" Yes, I reply. "It doesn't look like cancer." Luckily, I didn't rest on that initial assessment. I told him I needed to have it checked by a specialist and he wrote the referral. I saw the dermatologist about a month later and her comments were almost the same. Here was a person who saw skin conditions every day of her working life. And she wasn't worried. She did tell me that she wanted it off soon and we tried to schedule the biopsy for the following week. This was early May 2011. Unfortunately, the insurance company had an issue with her notes and denied the biopsy without further notes. To make the original appointment I had called in a personal favor and had a sub cover the first half of a work day for me. I got a call about a half hour before my appointment to cancel it. Due to schedules, mine and the doctors, I rescheduled the biopsy for the week after summer break started, mid June. I still wonder if that 6 week delay made a significant difference.
The biopsy went off without a hitch. The usual discomfort, maximum numbing agent (I'm resistant to it) and out the door I went. I asked about results and she said she usually tells her patients when they come in for wound re-check but if it made me nervous, I could call on Friday and see if the lab results were back. I told her I wasn't worried and would just see her the following week. I knew I was headed up to the Sierra Mountains, where there is blessedly no cell signal and no phones and no TV. I honestly was not worried. I was worried three years ago when I did this the first four times, but this time, phhft - not worried.
I can honestly say that I've never had a doctor call me personally. Of course, I've had lots of nurses and medical assistants call me over the years, but never the doctor herself/himself. The dermatologist tried to call me twice on Friday night. Once at 630p.m. and again at 730p.m., both time giving me direct numbers to her office. I got these messages on Sunday afternoon while driving back to civilization. I had my Father-in-law in the car with me and he is a multi-cancer survivor and was my sounding board. We talked through what the messages might mean and we settled on an infection that would benefit from immediate antibiotics or basal cell sarcoma, the least malicious of skin cancers. I brought up my niggling fears of melanoma and he reminded me how statistically rare it was especially for someone of my young age. It was a long night of worrying but because I wasn't worried about "the worst," I will say I slept pretty well. Ironically, it would be my last night of decent sleep to date.
So, what's it like when you hear those words? I'm sure it's different and exactly the same for all of us. The disbelief, the shock, the why-me. the never-forget-where-you-were moment in time. I had made myself wait until after 9a.m. to call. It worked out that the boys were in swim lessons that week and my husband called in sick to work to see the doctor himself. So, I was sitting poolside, on my cell phone when I called the doctor back. I have never been transferred to a doctor, let alone to one so quickly. Her words were kind and to the point. "The pathology report came in and you have malignant melanoma." (At least that's the words I remember her saying). At this point, I couldn't breath. I couldn't think, I didn't know what to do. My world had stopped. I had cancer. Skin Cancer. The rarest but most deadly version.
Luckily, the doctor took over the conversation and told me that my next appointment would no longer be a re-check but an extensive excision to remove a large section of the area of my back by my left shoulder blade. I was just aware enough to realize I wasn't with it and I requested a copy of the pathology report. I'm so glad I did because when my brain kicked in later, this piece of paper because the basis of my battle plans.
I had made the phone call to the doctor on my cell phone, and to not be rude, I had walked away from all of the other parents who were sitting pool side watching their kids start their lessons. After disconnecting the call, I walked back over to where my husband was sitting and plopped down. I couldn't breath, I couldn't feel my body, I couldn't even process what I had just heard. My husband looked at me and said, "What did she say?" I choked back a sob, leaned on his shoulder and said, "Melanoma." He put his arm around me and said the best thing he could have, "I'm sorry." We sat in silence for many minutes, me wiping tears from behind my sunglasses and him with his arm around me offering me comfort the only way he knew how.
This is how my journey started. I know I will never, ever forget every minute detail about that pool deck, what I was wearing, the details, the feelings. It is a life altering moment. The same as when your children are born. And as I sat poolside that morning, I watched my children swim without any idea of how their mother's life had just changed. And as I continued to watch them swim, I went into battle mode. I refused to entertain the idea that my children, 6 and 8 years old, would be left on this earth without their mother. I decided right then and there, I would do everything I could to be a pain in their backsides for many, many, many years to come. And I haven't stopped fighting for that 3 weeks later.
I decided to start a blog to allow myself a place to share and a place for others to learn from. I figure that's the teacher in me. If I can write something, just one thing, that convinces someone to see a dermatologist, to trust their instincts, or to know they aren't alone... then I will be thrilled. If no one sees this, that's ok too. I am writing as much for me as I am for others. I will post the few pictures I have because even now, when I search melanoma photographs, none of them look like mine. I will update as I go and share what I can.
The journey has only begun but I plan on winning!
No comments:
Post a Comment