It’s interesting to go back through this story over a week after it happened. If you ask my interns about writing their psychotherapy notes they will tell you that I require them to complete them within 24 hours or risk forgetting the important pieces of what was discussed. They will also tell you that I hate the meaningless word “interesting.” I wish I could have taken my own advice, but I guess this is my blog and I’ll write how I want to. As I write this now I am receiving my first dose of chemotherapy and with every cycle/click of the infusion machine it’s starting to feel more real, so the confusion from those first few days is starting to feel somewhat far away and I worry if I will leave out important bits. I’d like to hurry up and get to the present so I don’t forget the experience so let’s get to it, shall we?
So Michael and I arrive home after that first oncology visit in disbelief. I am pacing around my condo, as I do when I get anxious, and Michael is quietly telling the story to a few key people over the phone. Michael does love that antique flip-phone of his, it’s cute really. My parents won’t arrive until after 7:00 and as it turns out my sister will be arriving in Atlanta around 9:00 that night, canceling the second leg of her flight from DC to Nashville for a bachelorette party. I’m so glad she was able to stay with me that weekend.
Parents arrive and Michael and I relay what we heard at the doctor’s office that day in as much detail as we can remember. They ask a lot of questions that I don’t know the answer to and start formulating an understanding of how to attack the problem. They will be the researchers and help guide me to treatment since I want nothing to do with scary words like “aggressive” and “chemotherapy.” Michael leaves us and we go to get Kristen from the airport and off to dinner as a family, which is a surprisingly light hearted pizza dinner. I make quips about taking Lortab in lieu of snooty beer, as is my typical M.O..
Starting Saturday the information gathering goes full force and the weekend is a blur of emotions for me. My dad and brother are extremely rational problem solvers by nature and start shaking the trees of people they know to find cancer survivors who have sought treatment so they can find the best place to go. My brother connects me to a well known doctor at M.D. Anderson in Houston (the #1 cancer treatment institution in the U.S.) and a private plane to take me there on Wednesday the following week. Dad gets the cell number of Rick Hendrick (multi-millionaire owner of large group of car dealerships in the south) who connects us with his physician who treated him for lymphoma at Duke University. Both connections provide valuable insight into the specialized nature of treatment for this type of cancer. I am grateful for the work they put into understanding what my options are and hope they understand how much I appreciate their compassion and concern. However, the idea of moving away from my home where my family of friends are to seek treatment for some enormous frightening life threatening illness terrified me.
Balancing the rational decision of finding a treatment center that will give me the correct regimen that will knock this cancer out with the emotional decision of having the social support that will be necessary to knock this cancer out was painful to come to. There was yelling. There were tears. There were a lot of bloody tongues with deep bitemarks in them. It was a dance designed to avoid bullying me into a decision I didn’t want to make (because it is ultimately my body) and to avoid offending those who did the necessary research to find a good solution. It was intense.
My parents were sure to include my closest friends in making the decision through closed door discussions out of earshot from me. Everyone was being so diplomatic.
P.S. The whole time this was going on I was looking a hot mess. No shower. No product in my hair. Glasses askew. Scummy PJ’s that had a bleach stain on them. Sweat stains on my old t-shirts. Tear-stained face. Lying in bed with a gross bloody gauze pad over my surgical scar which had suddenly started to bleed and weep. Yuck.
As all of this angst and anxiety were happening there was a steady stream of love pouring in from all sides. Between my facebook update, phone calls, and texts the social network was activated. I could not believe how many people were calling, texting, emailing, and facebooking their messages of love, support, care, and concern. It was overwhelming to think that I had generated this kind of response and I was scrambling to respond with gratitude amid the other discussion. Eventually I just gave up on answering the phone or replying to text messages. I just settled for feeling supported and loved.
The symphony of information that was playing around me also stirred me to begin the process of making meaning of all of this. What is the lesson I’m meant to learn? Where is the justice/injustice in all of this? What is the right attitude to take towards this deluge of information? I decided on the “Why not me?” tack that stuck like a random post-it to my brain from some conversation I heard or some book I read about serious illness. I mean really, I have great health insurance, I have a great family and network of friends, I’m in great physical shape (the trainer was working to make me hot-ER, remember?) and have almost no physical symptoms, I have a job that has given me insight into managing serious illness and is very understanding of people who experience serious illness. Who could possibly be in a better place to fight cancer? I think about the 2 clients that I have had who died and I know that they certainly couldn’t, but I know that I can.
This fledgling insight made the decision I had to make clear for me, though communicating it was not easy. I knew I wanted to stay in Atlanta and need to stay here to have my team hold my hand. As much as “your friends will come visit you” was offered as a response to this question I knew I needed more access to them than I could get in a foreign city. Thinking about purchasing plane tickets, then hotels, then rental cars, then figuring out how much time could realistically be spent in the hospital room with me made the idea of going away seem improbable.
“I will start my treatment in Atlanta. Emory is a great institution. I have spoken with 2 survivors of lymphoma who are good friends of mine who were treated there who are both in remission and highly recommend their physicians and this institution. I have spoken with 2 physicians whom I trust completely who have advised me on making decisions about receiving medical care who tell me about this institution and the importance of having social support. I know at least 15 other physicians who trained at Emory and are excellent healers. I need my family to hold my hand while I go through this and this is where they are. Thank you for respecting my decision.” I said.
My family hedged for a minute, concerned that I was making a life changing decision here mainly with my heart and not the problem solving research they had poured over, but ultimately they support me and will stand with me. The possibility of seeking treatment at other facilities is not ruled out if we learn that Emory is not the place for me, but I will begin here and I have everyone on board. Relax. Breathe. Drink! It’s the Superbowl for chrissake! Cheers!
So Monday rolls around and we get started with scheduling and communicating with the team at Emory. Tuesday I go in for initial lab-work, a PET scan (imaging to determine the density and location of cancer cells in my body) and a bone marrow biopsy (to determine staging and how far cancer has infiltrated my bone marrow). I go into these two procedures as a matter of course, taking them like brussel sprouts that I know I need to get better. That bone marrow biopsy hurt by the way!
The first time I walked through the archway of “Winship Cancer Institute” was surreal. “I can’t believe this is my life, what the hell am I doing here?”
The first time I sat in a crowded room of people waiting for infusion or blood-work was bizarre. “So do all of these people have cancer? Is it as bad as mine? Is it as scary for them as it is for me? Do I deserve to be more scared because my cancer is worse? How do I know my cancer is worse, I haven’t done any research! Does someone here have it worse than me? Which of these people will I look like? Am I the youngest person in this room? Do I belong here? Is it inappropriate that I think the girl behind the check-in desk looks like Rihanna? Is it wrong that I told her so before I even finished having that thought inside of my head and it came across like I was gay flirting with her? Gee, the people behind the desk are so sweet, I hope my parents are taking notice and are becoming more confident in my decision.”
This day was a lesson in waiting around and making the stillness meaningful, using it to keep the mood positive and also to process the gravity of the situation. I am using the film “Life is Beautiful” as a model for making cancer into a game, accepting the horror by making the serious aspects into a game to protect me from pain.
Ok, I’m tired. I think I’m going to try to find some sleep in this hospital room on these 100 threadcount sheets, fluid machine clicking at my side. Sorry this was more expository and less humorous, it’s just been that kind of day. I’ll get through this part soon and get to the present. Promise.
G’nite!
Breaking Ned 