But as I learned just days ago, while the results were great (clear margins, not in lymph nodes), I still "have" cancer because it is melanoma and melanoma does not operate by normal rules.
We left our daughter at daycare and sat in the waiting room with a litany of questions to ask:
- What is my chance of re-occurrence?
- Is there anything I can do to prevent re-occurrence
- How does this affect our planned infertility treatments 1) Natural cycle IUI's and IVF?
- How might the hormones used in treatment affect the melanoma?
- Does melanoma really grow faster while pregnant?
- What stage am I?
- Are there any other screenings I can have done besides PET/CT?
- How frequent will my scans be? Are there negative side-effects from frequent scans?
- How can we be as aggressive as possible?
- Should I have lymph nodes biopsied again in a few months?
- What type of sunscreen should I wear?
- Is there a certain amount of time when I will be "in the clear" if I don't have any re-occurrence?
There are no treatments for patients unless they are stage 3 or 4, as we had already learned because the benefits need to outweigh the costs, and even the treatment can kill you. And sadly, he did suggest holding off on trying to have another baby, at least until we have our 6 month scans. I asked him if I could have the scans in 3 months instead, and he explained that if any cancer was growing now, it would not yet be big enough to be picked up on a scan in three months. Plus, there's the exposure. We split the difference, sort of, and he agreed that I could have scans again in 4 months.
Then we were told something slightly alarming: that there was no melanoma found in the wide excision. Well since the biopsy showed margins that were not clear, there should be some there, right? This had us wondering if - gasp - the wrong area had been excised. What if the bottles were labeled incorrectly by the doctor or when they were sent to the lab? It could happen, right? Nathan was on the phone to the surgeon, who took personal offence to the thought of this (though the error would have happened prior to his involvement) and started explaining that he doesn't just go taking out chunks of skin. Well, the oncologist, who knew the surgeon and was motioning for the phone and Nathan passed it off to him, not really being given the opportunity to explain he was handing it over. It was pretty funny when the oncologist started telling my surgeon that my wound was now looking infected and he would need to place me on a course of antibiotics, and the surgeon, still thinking he was talking to Nathan shot back with "You cannot say that - that needs to come from a doctor!"
We left the 3 pm appointment just after 5:30 pm, more confused and defeated, and arrived to our little girl's daycare before they closed at 6 pm. We are considering switching medical groups on the first of the month, but still have appointments this week, with a new dermatologist and another visit to my primary care. We are also getting second opinions on the pathology reports, which may take up to 10 days, so that we can be certain of proper staging.
Being told that you - or a loved one - have cancer knocks the wind out of you and shakes you to your very core. I used to love being scared as a child and remember entering my teens and 20's realizing that "nothing" scared me anymore. Well cancer sure does. And it does it in way unlike any horror movie. Because it is real and it is your life and it is in your body.
It invaded my mind long before we found out that it was not in my lymph nodes. At church that first Sunday, my thoughts started drifting as we sat in the fifth row, close to the choir because our daughter likes watching them sing. I guess I do, too. I looked at my favorite cute older woman, 70-ish with a gray bob, stylish clothes and always a bright shade of lipstick. As she sang, I imagined her having tea with a good friend later that day, watering her spider plants on the patio and then feeding her cat a combination of wet and dry food, so it didn't ruin their teeth. Then my eyes landed on a homely girl in her late twenties. She was pretty, but not too pretty, with no ring on her finger. Before I knew it, I pictured her making a good second wife to my husband. I was as comforted by the fact that she looked like she would be a good Mom to my daughter as I was the fact that she probably did not have as good of a sense of humor as I do, thus ensuring that he would still miss me from time to time.
I have been so caught up in my own worry, self-pity, and fear of leaving my daughter without a Mom that I did not realize the turmoil my husband was in. His tough "we've got this - you're going to be fine" attitude was mixed with the sweetest helpfulness, and he would cheerfully ask me several times each day what he could do for me, or help with. Each day, I woke up a new post-it in a different location with an explanation of something he loved about me, which I have hidden away, and will save all my life. He prayed with me at night, and held me as I cried and told me he wished it was happening to him instead. I had no idea that he was going through so much because he seemed fine and was "there" for me.
It wasn't until I saw his elation yesterday when we were given the good news of clear margins and clear lymph nodes and he told me "Now I can eat" that I realized how tough this had been on him. In less than two weeks, he had lost 15 pounds, and I dropped five. It probably would have been more, if not for our local Catholic church's meal tidings which we signed up for with some coaxing, and were given a few home-cooked meals every few days for one week.
But I will say that not all of this has been negative. There's nothing like being told you have cancer to infuse your life with meaning. My husband and I already have a completely new outlook on life and each other, how we spend our time, what we worry about and who we let get to us (read: no one). This new perspective is slowly emerging and taking shape as we steady ourselves, still reeling from the news. I hope to expand on that and use the power that cancer has over me right now in positive ways. Tonight was a rush and a blur and we are tired and scared but we are clinging to each other with a tender kindness that somehow makes it all palpable.
Though I lament the fact that I now have an oncologist and still technically have cancer, I am keenly aware that what I have to be thankful for outweighs the power that cancer holds. I am blessed beyond measure because "something" got me to that my new doctor (Tiffany Wilson in Irvine), who did a biopsy of a mole that didn't really look suspicious and caught it. That "something" was either my Mom, God, my intuition, or all of the above.
I want to thank you for reading and being a part of my journey through this, and all of you who have reached out in support. Somehow, my blog views are now hovering just above 6,000 every month, something I never dreamed of, with ten or more readers in the United Kingdom, Canada, Australia, Germany, India, Estonia, Brazil, Spain and Russia.
If you haven't already, you can sign up to be notified of future postings here. Don't worry, you won't read about me to turning into a cancer warrior or survivor, something I think should be reserved for those who undergo chemotherapy. But I will share with you my life as it comes my way, with honesty, sincerity and hopefully some humor.