This was how I felt on the inside the days following my diagnosis.
May 20, 2015: The World Spins Madly On
Coming out of the twilight sedation was dreamy. The world was fuzzy and light and I opened my eyes to see Dr. L walking into the room. In retrospect he was sad, and later my mother told me they had moved us from the normal recovery room to one with a beautiful wooded view. It wasn’t good news. “There’s a malignancy.” Before and after. Before he uttered this phrase I was normal. After he uttered this phrase I looked over at my mother sitting in a chair in the corner with the tears in her eyes, and all of a sudden I had cancer.
And then the comforting began. Me comforting myself and me comforting everyone else. People talk about this a lot with these diagnoses. The urge to make it normal is astonishing. To make small talk with the nurses and doctors looking at you with such pity in their eyes. Don’t you dare pity me. Be normal. Tell mom it will be okay. Call dad. Call Monica. Call best friends. Pick up a smoothie go home and field phone calls telling everyone it will be fine. Do some googling. No no no no no no. Do NOT google. Do not cry. Laugh and help everyone else to laugh with you because the crying makes it seem real. Go to sleep and wake up in the morning. It is now After and I have cancer. Once again, don’t you dare pity me.
My mother filled out the online application for MD Anderson that afternoon after we returned from the outpatient clinic. While I still tried to pretend that I was Before, she began moving forward. In my haze I gave permission to the woman on the phone to speak with her and my earth began spinning on a different axis. Information needed to be gathered, scans needed to be done, and if I was lucky, my case would be picked up at MD Anderson, the number one cancer treatment center in the United States and leading researcher in colorectal cancers. The following day I returned to work and called Dr. L for more details after realizing I hadn’t absorbed anything the day before and hadn’t asked questions.
The initial dictate to my family was firm: “under no circumstances are you to call this rectal cancer. I refuse to spend the next year talking about my rectum with my friends. It’s embarrassing. We will call it colorectal cancer. No one needs the details.” Dreamer. Within 2 weeks it became rectal cancer. It’s surprising the things we get used to after saying them enough. Rectal. Rectum. Bowel function. Sphincter saving. Abutting my vagina. Fuck me.
They don’t know much in the beginning. Lower rectal cancer. He believed it to be an adenocarcinoma and told me it was so obvious that if I wanted, I could reach in and feel it myself. Thank you, but no. Radiation, he said, maybe chemo, maybe surgery. So it began. The test, the doctors appointments, the lab work, MRI’s, PTscans, CTscans, colonoscopy with an EUS (endoscopic ultrasound). In those days between diagnosis and treatment time dragged so slowly that it felt like the cancer would kill me before the treatment began. I smiled, reassured my friends, spent time with family, continued to go to Pilates, continued to work, and once or twice cried loudly in my car while I beat the steering wheel. Super cliche.
The days after my diagnosis were a frenzy and here are some of the most important lessons I learned.
Call to Schedule Your Appointments Immediately: The doctor or his representative will always tell you that their diagnostic clinic will call you to schedule an appointment for lab work, scans or any other follow up testing needed, and will provide you with a phone number in case you don’t here from them in 1-2 business days. Don’t wait for them to call. Wait about 1 hour for the medical staff to enter the order into the computer, then call to schedule your appointment. I can’t tell you how many appointments I was able to schedule 1-2 weeks earlier than I would have waiting for the office to call. Often I was able to slide into someone’s cancelled appointment or stress my fear and have my name put on a cancellation list. Like I said above, it feels like a lifetime between diagnosis and treatment, so take as much control as you can in driving the process forward.
Do Not Google: There is an abundance of information online. This blog is part of that abundance. In the beginning it is overwhelming, and there are some things you might not want to know immediately. This is your cancer experience and each one of us is different. The mind is a powerful tool, and it is important that you feel optimistic and strong going into this. Everyone handles treatment differently, and a lot of the information you will find out there doesn’t pertain to you or is outdated. If you need information go to the National Institutes of Health website (www.nih.gov). Otherwise you will make yourself insane trying to piece it all together. Also, everyone has a friend, family member or acquaintance who has been through the same thing and wants to talk to you. Your call. I spoke with one 63 y/o woman who had rectal cancer and had me so freaked out by the end of the conversation that I couldn’t talk for 2 hours. I stopped listening to other peoples stories and decided to have my own cancer experience.
Get Organized: You will need a calendar, pens, a notebook and an escort to all medical appointments. In the first weeks following your diagnosis, your medical team is rushing to gather information while all you really want to know is what stage, prognosis, and when they will finally pull themselves together and start treatment. Seriously, I remember the moment where I told one of my doctors that as no one else seemed necessarily concerned about beginning my treatment, I would heal it myself with visualization and diet. I meant it. The waiting was making me crazy. The more organized you are the more control you have in pushing your treatment forward. In your notebook you will need:
—copy of medical records
—disc of CTscans, PTscans, MRI’s, etc
—phone numbers for MD’s, nurses
—insurance information
—dates of test, lab work, appointment
Take a second brain to your appointments. You will be receiving a lot of information and it’s very difficult to remember everything that’s being thrown at you. It’s always hard to remember to ask questions when all you want to do is crawl up in a ball and make it go away. Compile a list of questions and write down the answers. Keep this list of questions and answers in your notebook. Trust me when I tell you that you will refer back to this list. You can find a phenomenal list of general questions and organizational tools from the Livestrong Foundation (www.livestrong.org). I’m a huge fan of their notebook!
The Squeaky Wheel Gets the Grease: To all my much loved medical professionals, please forgive this statement, but it’s true. Send emails, make phone calls, and follow up. You might have to push office staff to get medical records, you will always need to ask for disc of your scans, and getting information shared between offices can be incredibly frustrating. We were incredibly squeaky about getting all of my information to MD Anderson as quickly as possible, and there were times I felt painfully obnoxious. Who cares? My first day of chemo and radiation began one day short of 5 weeks from my diagnosis, and people were surprised we got in so quickly. It felt like forever, but there’s no treatment that begins fast enough when it comes to the “C” word.
And after all of this, and it feels like a lot, treatment begins, and you realize you’ve barely scratched the surface. The human capacity to endure is simply stunning.
What a Glorious Mess 