Wednesday, February 9, 2022. For the next two weeks, my days were filled with a flurry of activities – attending appointments, connecting with friends, and beginning to figure stuff out. Due to the large amount of content, I decided to break this post into two parts. Here is Part 1.
I had lived knowing I had cancer in my body for 8 days and 7 nights. It was sort of like a dream, but sort of not. I noticed that I slowly calmed back down to low, tolerable anxiety for the 6 days following diagnosis, but then immediately zoomed back up to outer space level during and after the surgical oncologist visit.
I tried to perform my job with some level of normalcy and concentration. I wasn't completely all over the place, but it seemed to vary from one hour to the next. Fortunately, I have worked for my employer for over 11 years and have proven I am a reliable and valuable employee. My supervisor assured me she would support me in any way needed, "People go through stuff," is what she said, and if that meant assigning me to easier, lower stress work for a while, then that's what we would do.
At the beginning of the year, I had taken on a more active role administering a suite of applications used for project management and knowledge collaboration. I was just beginning to learn the complexities of building and modifying workflows and was about to release my very first one. The individuals who had requested the new workflow were two analysts on a different team. Throughout January, I had met with them to work out the details, built the configurations in the test environment, had given them a chance to try the workflow in test, made updates per their feedback, and I was now planning to deploy the changes to production this week.
I now had a conflict for the deployment timeslot on February 10th: my appointment with the genetics counselor. I sent an email to the two analysts. I let them know I was dealing with some unexpected health issues, and I apologized for the short notice and delay. One of the analysts, Professor J, sent me a Teams chat saying he hoped I was feeling better. I replied, "I am having a health problem I never thought I'd have to deal with, and it is really rocking my whole world. I hope I'm not making you uncomfortable by sharing that... but I just wanted to mention why my involvement has been a little bumpy."
Professor J's response floored me.
He could understand dealing with an unexpected scary health problem because he was a recent Stage 2 cancer survivor.
How did he know I was also dealing with cancer? He didn't. He was just being open about his story because he is someone who likes to share and feels grateful to do so. Less than 2 years earlier, the week before he began his employment with the company, he found out he had Stage 2 Hodgkin's Lymphoma and needed to start chemo treatment on the Friday before his first day of work. I immediately typed back, "I got diagnosed with IDC breast cancer last Tues." He sent me a thoughtful response providing some details about his status and how he is doing well and was ok during his treatment. I responded with a heart reaction. With that, Professor J became my first miracle and my first new friend to join my road trip to Cancer Survivor Township.
10:30 AM. Thursday, February 10, 2022. Miah and I arrived at the hospital for our second time in less than a week. This facility acts as both a clinic and hospital, so it is massive and busy. The parking ramp has 5 levels. We didn't have a great gauge on the appropriate amount of travel time to plan to drive from our house to the hospital, and for this appointment, we were really cutting it close. The parking ramp was full, and we had to drive all the way to the top level, sky above us. I was anxious and worried they would have to reschedule the appointment and even worse, would this make the providers think I was a flake patient and now I wouldn't get the best care?
We entered the hospital and went to the cancer center to check in. "Isn't it the cancer center on Level 1?" Miah asked me. I recalled having seen two different cancer center entrances last week, one on Level 2 and one on Level 1.
"I don't know?! I think they said here, on Level 1!" I frantically replied.
A passerby staff member overheard my distressed voice and came over. "Where are you trying to go?" she asked nicely.
"To the cancer genetics counselors," I told her.
"Ok, you are right here, it's this entrance," she pointed to the entrance on Level 2.
I rushed in and went to the check-in desk, Miah tailing behind me, frustrated by my hyper behavior. "I'm sorry, I'm late, I hope it doesn't mess up my appointment. We had trouble finding a parking spot and I didn't estimate the right amount of time to park and get checked in," I told the woman behind the desk.
"It's ok, what's your name and date of birth," she calmly asked, and got me checked in. My heart rate slowed a little as Miah and I stood in the back of the waiting room. It was crowded again, just like two days ago at the breast clinic. My mind stayed blank for the most part as I noticed the artwork on the walls. After a few minutes, a dark-haired woman called my name and took us back to a large office with a window. She introduced herself as Genetics-Counselor P and invited us to sit down. We sat at on the couch in front of the window. Genetics-Counselor P took a seat on the chair to my right and opened her laptop to get started.
For the next 45 minutes, she used a special software program to map out my family tree of immediate and extended family members, and their known medical conditions. Then she described the currently understood science behind genetic mutations and cancer. She explained that I could request genetic testing for all currently known genetic mutations associated with cancer, or I could choose to only test for certain mutations, such as those associated with breast cancer.
Miah chimed in to express his opinion and I'm glad he did. I was originally planning to opt for the whole panel and test for everything. But Genetics-Counselor P told us that inherited genetic mutations are only linked to about 15% of all cancers.
*Disclaimer - I think this is what I heard her say. If you are at all concerned about your risks for cancer as it pertains to inherited genes, please work with your health care provider to understand the facts. When I google-searched this fact, I found information on cancer.gov that inherited genetic mutations play a major role in about 5 to 10 percent of all cancers, which is different than what I think I heard Genetics-Counselor P tell me. Science is changing every day, and many people are working tirelessly to further understand the links between genetics and cancer.
I didn't think 15% was a high enough percentage to check my body for all genes associated with cancer. Thinking back to my years of health problems and general predisposition for worrying, I didn't want to have a known genetic mutation hanging over me unless I was prepared to do something with that information. In this case, over the past week, I had considered my willingness to get a double mastectomy if it turned out I had any of the mutations associated with breast cancer. I was feeling confident I could take on that surgery if necessary. Also, my past 4 gynecological surgeries weren’t horrible, so if a breast/gynecological mutation, like BRCA1 or BRCA2 showed up, I could also probably tolerate a full hysterectomy. I told Genetics-Counselor P to order the panels for breast and gynecological cancer mutations.
She finished her notes and sent us back out to the waiting room with a small round pager that would buzz and light up when it was my turn to go to the cancer center’s blood collection lab and visit one of the vampires. Miah and I sat down, and I glanced around. I noticed a young man to our left – he looked to be early 20s; everyone else appeared 10 to 20 years older than us. I thought, “Wow, these are all cancer patients?”
And then I thought, “I bet the young man is here with his mom, or another relative. He can’t be a patient. He looks so young and healthy.”
But then his buzzer went off and into the vampire suite he went. “Geez,” I thought, “Cancer does not discriminate.”
Miah and I chatted and found some humor. “They shouldn’t use the word ‘cancer’ anymore,” I said, “It’s such a stigmatized word.” We came up with two new ways to describe the disease:
- The disease which shall not be named (Harry Potter - Voldemort)
- The disease formerly known as cancer (The Artist - Prince)
We laughed loudly. A few people looked our way. We were too uneasy to care.
My buzzer went off. I got up and walked to the lab doorway. A female vampire took me to the opposite side of the large room. There was an older man sitting adjacent to me, with the other vampire. For some reason, I was expecting vials and vials of blood to be drawn, but my vampire only took one. I rejoined Miah and we walked back through the hospital maze, up the five flights of parking garage stairs to our car, and drove back home.
1:50 PM. Thursday, February 10, 2022. Miah and I sat in the exam room of my primary care provider’s clinic. The day before, I had called the clinic and explained I wanted a consult to help navigate this situation. I also needed someone to submit my FMLA paperwork. Either I had extremely good luck, or they keep a few timeslots open for urgent patients like me, because they were able to schedule me with her the very next day.
Primary-Care-Provider-Doctor A came into the room, sympathetic and ready to listen. I explained I was terrified of inadequate pain control. I have a tolerance to opiate pain medicine due to taking tramadol since 2013; I was worried this was going to make any surgical pain hard to manage. Primary-Care-Provider-Doctor A reassured me that she would prescribe all my pain medicine and make sure I was taken care of. I told her I didn’t want to appear “drug-seeking” and was afraid if I was having trouble managing the pain and needed to ask for stronger medicine that I would meet resistance. She told me we would do whatever we had to do to get me through treatment, and if that meant getting my body dependent on strong pain meds for a little while, we would do that, and then work to get me back off them.
Miah’s eyes filled with tears, “You really mean it Doctor? She really will be taken care of?”
Primary-Care-Provider-Doctor A was confident and said she would handle it. We talked a little more about my anxiety, insomnia, and worsened stress-related migraine pain I had been having since my diagnosis. Primary-Care-Provider-Doctor A didn’t think there was any medicine she could give me to make me feel ok with the situation; her opinion was that I needed to get through the additional diagnosis steps (genetics and MRI) and move into the treatment stage before I would start to feel better. She refilled my tramadol at a slightly higher quantity so I would have enough to help with the increased stress pain for the next month.
Miah left the clinic feeling relieved and grounded. I left still teetering on the steep edge of doubt. Even though my PCP had reassured me, I wasn’t able to trust her words. I was far too traumatized by my history of chronic pain to believe this would be any different.
Friday, February 11, 2022. I scoured my brain, looking for people who had been diagnosed with cancer and undergone treatment. I needed these people, now. For the past several years I had been relatively anti-social, keeping my inner circle small and comfortable. Suddenly, I was strapped in the seat of a Cancer Road Trip, and I realized I needed to ask for directions. It's interesting, reflecting on it now, that I didn’t miss a beat to feel insecure or worry about what people would think or say. I simply acted, without pause. And the Universe answered with not a whisper, but a roar.
First, I emailed Resilient-Researcher-Rochester J. He is my former colleague and friend. We worked together when my employer’s company was small, with less than 75 of us working there. Since then, Resilient-Researcher-Rochester J had returned to his roots, working in medical research for the renowned Mayo clinic system. Every year, he emails me on or around my birthday with an annual update. A few years ago, he shared that his family had hit a rocky patch; his wife was being treated for leukemia.
I typed up a quick note telling him, “Guess what? I get to join the special people’s club now… because I have breast cancer.”
Two hours later, he wrote back, sympathizing with me and expecting a good follow-up to my diagnosis and good treatment plan. He told me he did not see cancer as a bad word, but rather a description of what is happening in the body, and that he is actively involved in breast cancer research through his work. I felt comforted and less afraid. Unfortunately, Resilient-Researcher-Rochester J’s wife would not be a good resource for me. It was better for her to avoid the cancer subject, to reduce her stress and anxiety. I respected that. However, Resilient-Researcher-Rochester J had another resource to connect me with: Peaceful-Comforting-Scientist A, another former colleague of ours. I had no idea Peaceful-Comforting-Scientist A had a cancer diagnosis, but Resilient-Researcher-Rochester J said she had lymphoma. I wrote him back, asking if he could get me her contact info.
Later that afternoon, I took another leap of faith and called the Psychic Horizons Center in Boulder, CO. I wanted to get a reading and some training so I could better access my psychic abilities. Last fall, my former psychic, a woman whom I had met with regularly for the past 10 years, had referred me to Psychic Horizons Center. This center is one of the places where she had trained when she lived in Boulder. She trusted them and thought they could help me learn more. Up until now I hadn’t yet pulled the trigger and made the call, but now, there was no time to waste. I had to get moving so I could channel the energies needed to finish my tarot songs with whatever time I had left in this lifetime.
The woman who answered listened to me explain my background and why I was calling. I shared the name of my referrer, and she remembered her! I felt like part of the group already. This woman had just retired from her role as center director so instead she gave me the names and phone numbers of two other experienced psychics associated with the center, who were also both breast cancer survivors. I called each of them right away and left a message on Teacher-Healer-Psychic K’s voicemail. A few hours later, Teacher-Healer-Psychic K called me back, and I booked a reading with her for the following Thursday afternoon.
12:30 PM. Monday, February 14, 2022. Two weeks since diagnosis. The day for additional imaging had arrived. I was going to enjoy this Valentine’s Day hanging out in an MRI machine at the medical imaging research center. I had experienced the joys of MRI imaging several times before and I knew well enough I was claustrophobic in the big beast. If my arms touch the side when I’m “in the tube” I freak out. So, I made sure to take another clonazepam one hour prior to my appointment.
Miah and I pulled up to the building and parked in a designated parking spot. This building was in the vicinity of but was not officially part of the hospital. I had been emailed a special parking permit that I printed off ahead of time. I placed this on the car dashboard. We walked along the sidewalk and up through the majestic glass entryway of the building. The lobby was huge and quiet. The place was peaceful and sunny. It was a welcome change from the busy, artificially lit hospital maze of last week.
The waiting room was empty, and so was the check in desk. We waited until the receptionist returned to check me in. Minutes later, a young technician called my name and took me back to a changing room. She asked me to take off my shirt and bra and put on a gown. I put my clothes in a small locker, turned the key lock, and put the key ring around my wrist. The technician returned and started an IV in my right arm. This imaging required a contrast dye to be injected at a precise moment in time. She managed to start the IV without trouble and taped it, along with a small syringe of contrast liquid, to my arm.
Next, we walked down the hallway to the imaging room, where a second young technician was waiting for us. I liked these girls! They were young and sweet, and I felt no stress. Yes, I was relaxed from the clonazepam, but I still appreciated how quiet and calm everything felt.
Sweet Girl Technician #1 walked me into the room with the MRI machine. Sweet Girl Technician #2 stayed in the first room, behind the glass. Sweet Girl Technician #1 instructed me to lie down, with my feet facing toward the MRI tube. There were two slots that reminded me of popsicle trays, where my breasts were to hang down so they could be imaged. My ribcage settled uncomfortably onto a hard plastic piece as I got situated. I lowered my face into a massage table-type face ring, so I was looking down into nothing. It was an odd and somewhat painful position to be in, because of my ribcage. As it turns out, I have a birth defect, known as pectus excavatum.
- Pectus excavatum is a congenital deformity of the chest wall that causes several ribs and the breastbone (sternum) to grow in an inward direction.
Sweet Girl Technician #1 placed headphones over my ears to protect me from the loud sounds of the machine and left the room to begin the imaging from the protected side of the glass. For the next 20 minutes or so, there were a bunch of images taken, and each lasted 30 seconds to several minutes. The time came for the contrast dye to be injected. The machine used an automated tool to push the plunger of the syringe and inject the dye! As it was injected, I started to feel an increase of pain in my right arm. At first, I thought it was normal to feel that slight pain sensation, but the pain kept getting worse. I thought I would have to say something and stop the procedure, but then it got better, so I didn’t say anything. And then, Sweet Girl #2 announced in my headphones that we were done. Sweet Girl #1 came and got me, took me back to my changing room, and removed my IV. I got dressed and met Miah out in the waiting room. Miah was surprised at how quickly it went, and how easy the whole thing was. We returned home and I took a nap until the clonazepam wore off.
That night, my phone chirped with another email.
Subject: New Test Results
Like a broken record, I logged into the electronic health records app to read the latest test results. They were too confusing to understand, but it looked like more abnormalities had been discovered; I would have to wait for the doctor to call and explain.
It's interesting how my concentration and energy drove me so immediately during these first weeks. I didn’t get depressed, I got moving.
The clouds of cancer swirled, threatening tornadoes above, but I didn’t lean into their pull. My feet stayed planted on the steady track of determination. And then, a new theory of speculation: Maybe the past was my training? Maybe the horrors of my health wouldn’t stop me from treating my cancer, maybe they would help me? Could this be a piece of cake compared to the canyons of catastrophe already behind me?
End of 6 – Genetics Part 1