Right now I am radioactive and waiting for a PET scan.
I’ve been anxious about this test since I’ve known I would be taking it.
I found a thickening in my left breast on Labor Day. It wasn’t a lump, but it was clearly out of place. I didn’t really think it was anything, but I googled it and discovered that breast cancer doesn’t always present as a lump. My regularly scheduled mammogram was only six weeks away, but I am not great with uncertainly. Six weeks of waiting would be intolerable. I called the radiologist as soon as I knew the office would be open, and when I described what I had found, she squeezed me in first thing in the morning two days later.
I arrived to an almost empty office. As other patients came and went over the next four hours, I shuttled back and forth between repeated mammograms, ultrasounds and the dreaded waiting room. I cooperated as they put my breasts and arms into increasingly uncomfortable positions.
Finally, the doctor asked if I could come back at two when her partner would be available for a few more tests and a biopsy. Of course I could. This was my first taste of how my meticulously maintained calendar would be revised at the whim of this disease.
Since that day, I have had an MRI, x-rays, blood tests and an EKG. I have met with a breast cancer surgeon, a plastic surgeon, an oncologist and, no less important, very kind and knowledgeable breast cancer survivors. I have future appointments with a radiation oncologist and a geneticist. Not least of all of this, I have had a bilateral mastectomy with an axillary lymph node dissection.
In our first meeting (which was after my breasts were removed), my oncologist explained that the post surgical biopsy showed cancer only in the left breast and clean margins. Twenty lymph nodes were removed, and nine of them were cancerous. The standard treatment for these types of results is eight chemo treatments, each two weeks apart.
Okay, four months, I thought. If we start now it’s over by March for sure. All I want to do is put this in my calendar because then it will happen. If it happens it will be over. Oh, how I want this surreal experience to be over.“No no,” they told me, “don’t make a big deal out of it. Just keep it on you, in case. And you shouldn’t hug any pregnant women or infants for the next 24 hours.”
But she wasn’t done. The chemo would be followed by reconstructive surgery and four to five weeks of daily radiation. The order and timing of those treatments would be determined by the radiation oncologist and the plastic surgeon. Okay, so I can’t put those in my calendar yet.
By the time she went on to explain that my cancer was estrogen receptor positive and therefore the radiation would be followed by oral hormone therapy, my mental calendar had overloaded. Did she say three to five years of treatments? Five to ten?
I refocused when she told me there was no reason to believe that there is cancer anywhere else in my body. But, just to be sure, she is scheduling me for a PET scan prior to starting the chemo.
I soon realized that if cancer were found anywhere else, that would mean more tests, possibly surgery, and that the course of treatment that I had so quickly mentally prepared myself for would be delayed.
And that brings us back to the day of my scan. I couldn’t lay a bet on the results of this test if my life depended on it. I had been completely blindsided by the breast cancer diagnosis; I had had a great summer, I was healthy, active and feeling great. The last thing I expected was for my life to be thrown into upheaval by cancer.
When I checked in at the front desk, I gave my name and birth date to confirm my identity, as I have at every appointment since my diagnosis. Then I was handed this card.
I had received another one when radioactive material was injected into my left breast prior to surgery. Apparently, that radioactive isotope would (and did) travel directly to my seminal lymph nodes (I had two of them) and highlight them for the surgeon. I was too preoccupied the first time to ask the question I asked this time: What do I need this card for?
“In case you are traveling anytime soon. Keep it in your wallet.“
“Oh! I AM traveling soon. So I should show it at the security checkpoint?”
“No no,” they told me, “don’t make a big deal out of it. Just keep it on you, in case. And you shouldn’t hug any pregnant women or infants for the next 24 hours.”
(Huh. Okay. …In case what?)
I took a seat in the waiting room.
Since my diagnosis, each of my friends has offered to accompany me to appointments and, to date, I have had more than a dozen. My husband has come to four and a good friend to one. I chose to do the PET scan on my own. A survey of the waiting room reveals that I am in the minority.
My mind is mostly blank, slightly curious. I watch the flat screen, which, similar to a hotel lobby screen, shows the many amenities available to me. Support groups, an integrative healing center, financial assistance. It goes through its cycle only twice before a nurse calls my name.
As I follow the nurse out of the waiting room, I see a long hallway along the exterior of the building with windows along one side. It’s a beautiful day. Chairs line the window side of the hallway, filled with people resting or waiting. Some have a jug of red liquid with a fat straw. I notice one has a blanket. I wonder whether I’ll be sitting with them soon.
As we turn, the nurse points out restrooms, which I can use now, she says, but not later. Later I will have to use the ‘hot’ restrooms at the end of the hall and to the left. I don’t understand what she means, but I am willing to follow the rules. (Later I do use one of them; they are labeled ‘Hot Restroom for Patients Only.’)
She leads me into a room with this sign on the door:
(Hazardous materials photo)
It is a short while before I understand that this too is a ‘hot’ room. And I am to be the “Radioactive Material.” For now though, it’s not even warm. It’s chilly. She leaves the room and comes back with a warm cotton blanket. It feels lovely, but I still wish I had worn socks today.
She tells me I need a glucose test like the one diabetics take one or three times a day. Is it okay to use either arm, she asks? No, it’s not. I was told by the surgical team who removed 20 lymph nodes from my left side that my left arm should never again be used for drawing blood, checking blood pressure or for an intravenous feed. I have so many questions for this nurse, but there is a small pleasure in being able to answer one for her — to be able to answer one question about my own body.
She washes my right middle finger and pricks it to check my sugar level. If I don’t get a certain result, they won’t do the PET scan today. I don’t know whether to hope it’s high or low. All I know is that I want this test today. I can’t go another sleepless night waiting for the results. She looks at the test. It’s okay, she says. Normal.
She inserts the intravenous line into my right arm and flushes it. Then she informs me that she must leave the room. She will go to the pharmacy for a radioactive isotope, which must be prepared immediately before it is injected or it will deteriorate.
I sit in the room alone, waiting, looking at my arm, at the tube attached to a needle going into my vein, all ready to be injected with something radioactive.
Before long, she comes back, wheeling a cart with a large container of raspberry flavored water and a solid-looking metal container with a handle.
She confirms my name and birthday again before giving me the drink and tells me twice that it is not radioactive. I am to drink at least two-thirds within the next hour.
She flushes the IV line again, confirms my name and birthday again, and then opens the metal container, which I assume is leaded. Inside is another protective metal container. On top of my anxiety about the results, it is disconcerting to think that this substance needed such a strong container to protect the people in the hallway from it — and now it is going to be injected into my body.
She opens the second container, and there is a small vial of clear fluid, which she injects into my IV. She flushes it again, removes it from my arm and puts a bandage on the injection spot.
She informs me that I am now to wait in this room (alone) for an hour. We are giving the isotope time to travel around my body looking for cancer. I can text or play games on my phone, but I can’t talk. I brought a book, but I start writing this article instead. And thinking. Mostly thinking.
(This is where I put the photo of the my foot and the table with the red liquid)
After the hour is up, someone will come get me and explain the rest of the procedure. The nurse did tell me what the red fluid is for, but I can’t remember. I can see on the label that it was prepared just for me immediately before it was given to me.
I feel like my body is in good hands but also like it doesn’t belong to me any more. I feed it and rest it and painfully stretch it as I have been instructed, but mostly I’m lugging it from appointment to appointment for my brilliant, kind medical team to manipulate. They will cure it. Repair it. And, I assume, give it back to me in the best possible shape.
In the meantime, I do what I am told — and try not to fixate on my calendar.
The results of the PET scan were clear, which was a huge relief at the time. Euphoric texts chimed among close family and friends as we spread the good news. Just two and half months later, however, I know that, for the rest of my life, the fear of recurrence will remain in the back of my mind. The bright side is that every cancer survivor I have met has told me that, though they would never say they are grateful to have had cancer, it has given them a greater appreciation of life.
I am more than halfway through chemo, and I still very much feel that my primary job is to help my medical team by being compliant, monitoring my body and taking care of it. I have a vast and varied supply of medication for the side effects of chemotherapy, and it is satisfying when I get the mix right. I do the recommended physical therapy so that I will be in shape for the next surgery and so that I will be able to lie with my arms over my head during radiation.
As for my calendar, I scheduled all of my chemo treatments immediately after receiving the results of the PET scan. They are my favorite days to cross off. I have recently been able to add a specific date for the reconstructive surgery. I don’t know the exact dates of the radiation, but I’ve made an educated guess and added it, albeit in pencil.