Alright, come on girl… Pull it together.
So first calls are made, the next obvious step is a texting binge. Michael Baker, my surgery companion is first on the list. “can you go with me to the oncologist at 2:45, I have lymphoma?”
Next blast goes to 5 interested friends who i just don’t have it in me to speak to yet “Lymphoma, oncology appointment 2:45, parents on the way, call you later.” The barrage of communication begins here and I learn to start putting off a response until I’m damn good and ready to do it. Sorry guys, love you all and I will get to you when I can muster it.
Baker arrives 25 minutes later. He is great, supportive, still, and suggests pizza for lunch. Perfect, I missed pizza-Wednesday with the boys this week anyway. We putter around a bit, wringing our hands in disbelief, saying things that we think will soothe our worries meanwhile wondering what this new doctor is going to say to me. We also googled him to find a picture, because news like this will likely be better received from someone hot. We squealed a bit when the first result we landed on looked like he stepped out of GQ…. and then we realized that we made a typo. Oh well.
We arrive at the office, criticizing the lighting concept and poor choice of flooring in the main lobby of the building, but were significantly more satisfied with the color choices at the oncologist’s waiting room. The women at the desk were kind but you could tell they knew who I was and were cautious in asking me to fill out their stacks of paperwork.
The nurse leads Baker and I back to the exam room, take vitals, humiliates me in front of my friend by making me step on a scale, and tells us to wait. We checked in at 2:30 and we definitely waited. My work supervisor told me to be sure and record the conversation with the doctor on my phone, so we tested it out.
https://files.me.com/bryanraybon/4xe9e6.mov
(You have to click on the link or paste it into your browser. I think it will download automatically and play in iTunes. I couldn’t figure out how to make stupid WordPress embed the link… stupid interwebs…)
After playing with the phone and laughing a bit, we decided we needed a little dance party so the phone became a little DJ booth; nothing like a little Gaga/Space Cowboy remix playlist to cut the tension. So the doctor finally joins us at 3:30 after walking past the exam room a few times and having a conversation with the patient or whoever in the next room. He looks a bit like a younger Bill Gates, and his name is actually William, so we’ll call him Bill.
So Bill starts speaking slowly, explaining the basics of lymphoma. “There are solid cancers like breast and lung cancers, and there are liquid cancers like lymphoma and leukemia. Yours is called Blastic Mantle Cell Lymphoma. There are 3 classes of lymphoma: regular, aggressive, and highly aggressive.”
“Mine is the first one right?” I said, sitting there with a blank look on my face as he is talking, aware of how much I loathe fluorescent lights.
“No. Yours is the 3rd one. You have a highly aggressive form of cancer, which is why you only noticed the first bump in your groin a few weeks ago and observed it increase so rapidly in size. It is quite rare in the general population and is very rare in people your age. Now take a minute and breathe because I just hit you with a lot. Are you ok?”
“What!?! I have the worst kind? Fuck! No. Really?” I sneer with some weird mixture of anger, disbelief, and sarcasm as though this man is trying to sell me some low-grade car that I’m clearly too bougie/klassy for. It’s like I was just insulted or something. “No, keep going. I’m fine.” I snort.
“Ok, so because this form of cancer is highly aggressive it is treated in a highly aggressive way. You will need to begin treatment as soon as possible. You will have to do a series of chemotherapy, which you will have to do during 5 day inpatient hospitalizations, followed by 2 week periods of recovery at home. At some point you will likely have a bone marrow transplant. I could normally treat you here in my office, but because the chemotherapy is so strong you will need to have a larger nursing staff than I can provide here. I am going to refer you to Emory University Hospital where I completed my residency and oncology fellowship, they are a great institution. I want to start with some preliminary bloodwork here before we make that happen though, so I’m going to leave you here for a moment to digest.”
He leaves, Michael and I look at each other puzzled and in some kind of shock, the phlebotomist comes in and sticks my arm with a “baby needle” to draw some blood, and asks if I need anything.
“A cure for cancer? A Xanax perhaps?” I said.
“I’ll see what I can do about the Xanax. (ignoring the first question) If you’re taking pain medication the doctor may not want you to do that, but I’ll ask.”
Great. I look at the floor, sitting on an exam table for the first time in what I am starting to realize will be a very long series of exam tables and blood draws. Fuck!
Bill comes back into the room to complete the conversation, I ask a few questions, he feels me up a little bit for good measure just to be sure that my other lymph nodes aren’t swollen, and declines to bring me a Xanax for the reason that phlebotomist gave. I could tell he was nervous and didn’t want to have this conversation at the end of his day on a Friday. He actually did a pretty good job of it though. He was quite clear in his explanation and responses to my questions. He acknowledged my anger and fear, normalizing the response. And he gave me hope that it would be treated. He discouraged me from doing too much research on my own since much of the literature and outcomes are modeled on patients that are 30-40 years older than me, but said that my family and friends could do that as they like. He was a bit vague about when treatment would start however. He said he would send records this afternoon to Emory and that if I hadn’t heard from them by noon on Monday that I should call. He then gave me a follow up appointment with him for Wednesday.
We walk out of the office in a daze, unsure we had really heard or understood anything, glad that we had recorded the conversation. On the way back to the car we pass less-hot-doc/surgeon in the parking garage who offers some condolence. I look at him and almost shout “I have the worst kind! I can’t believe this!”
We get into the car and I decide that the whole world needs to be just as angry and bewildered and angry as I am, and since my supervisor had been so eloquent in her text message earlier in the day, I decided that “Fuck Cancer” was a simple enough message to communicate via status update. I got over 50 comments to that status update.
Ok, pause. As I write this I’m about to go off to my final meal before the big show starts tomorrow. I’m getting a port installed in my chest at 12:30 tomorrow afternoon (sci-fi, I know) so that I can begin chemotherapy on Thursday. I have been having a lot of great meals with a lot of people who really care about me and it feels wonderful. Re-hashing this story kindof sucks me into a crappy emotional place so I’m happy that I have people who love me and access to fabulous food. Thanks you all for sharing this experience with me.
Bon appetite!
Breaking Ned 