Four years ago on January 8th I was diagnosed; yesterday Myles my three year old and I spent a good two-plus hours in an emergency room waiting room waiting to see what was going on with my husband Keanen.
It's not my first time being someone's homework or getting a letter/email about it. The first time was in response to a letter to the editor I sent in to Parade Magazine for Lynn Minton's column. She used to ask questions weekly to kids and teenagers. Parade Magazine was in the Sunday paper, and I looked forward to her section when I was in high school. In the question I replied to, she had asked if we were optimistic or pessimistic about our generation's future, Generation X. Being what I thought was a writer back in 9th grade, I excitedly hopped on my parents' computer and began to type.
Papa had blood and platelet transfusions, G shots in his belly, a PET scan that took four tries, and round two of R-ICE chemo. Each appointment lasted hours. Most were at 6:45 a.m. which with Myles and our hour drive to the clinic meant waking up around 4 to get dressed and meet my mother-in-law to give her Myles around 5:30. I sat in the waiting room typing away at my book, or browsing Facebook, or the news, writing emails to my mother whom I do not talk to enough. I learned which chairs were next to electric plugs to recharge my electronic devices; I knew which chairs were under air vents and freezing. I chatted with patients and families -- I guess I look approachable, or people are nervous and need to chat with someone other than their caregiver who they spend hours with. Most of them were living in hotels or cancer houses in the area; people travel from across the country to have their cancer care at the Cancer Care Alliance.
Cancer is a scary disease, a career, or an opponent in battle depending on who you are and how you look at it.
It's not a topic I know a lot about; soon that will change. Myles and I are beginning a new journey in our lives: 'Taking care of Papa.' My husband Keanen's father was diagnosed months ago with stage four Mantle Cell Lymphoma. He underwent the first bulk of chemotherapy in Reno, Nevada, where he lives.
And then Myles turned 3.
The little boy who keeps me on my toes 24/7, who has never had a mother without a deadly disease, who has been on meds since he was in my belly.
A while back I had an idea to spend a weekend without touching my iPhone, not to play "Candy Crush", to check "Facebook" to see what my 436 best friends were up to, no CNN, no local news no "Words with Friends" -- just family real life time.
From the time we're born we begin to die. We put bad things in our bodies. We smoke, drink, eat junk food and internally think if no one knows you snuck a candy bar for breakfast it's okay.
I got a fabulous letter in the mail a few weeks back:
Your medical provider has some important news for you. Your primary care and HIV doctor is leaving our practice and is no longer your doctor. As of 01/09/2013 he is no longer your doctor. We understand your relationship with your doctor is important to you. We want to help make this change as easy as possible.
"I got it from her, she got it from a gay ex-boyfriend," he told his then wife.
Not that I had talked to him since BEFORE I even knew I had it. I had no contact with him after 2007.
I am proud that I am not embarrassed by this diagnosis. I am proud that it has made me stronger and I didn't turn myself into a victim. I am proud that I have befriended the woman who acquired HIV from the same man as me.