My friend Ed recently asked me, “What does it feel like to be in the oncology waiting room?”
It was an interesting question. I had seen many doctors in my life, but never a medical oncologist. It feels different to me, of course. Even during my cancer experience, it felt different at each stage of treatment.
We all go through our yearly check-ups with our doctors — PCP, GYN, dermatologist, you name it. Personally, I never really thought they would “find something,” certainly not in my breasts. My tests results had always been great. Even while I had my tumor, my blood work was excellent. “I can’t find anything wrong with you!” I recall a doctor saying to me three months before I found my lump. I am young, I thought. What could possibly happen at this point in my life that’s life-threatening? And no one in my family had been diagnosed with cancer before the age of 40.
Before BC, I had different worries when I saw my regular doctors. “Will my cholesterol be too high? I’ve been eating too much greasy foods lately” or “Is this a UTI?” You know, simpler stuff.
Ok, I’ll confess. There were times when I thought they would find ovarian cancer due to my family history, but breast cancer was the farthest thing from my mind.
I never enjoyed seeing doctors. I did it because I had to. It’s what I was told to do at home from a very young age — to take care of my health. There just seems to be more issues with us females, no? Even our gynecology check-ups start at a much earlier age than men’s prostate exams. They don’t get their prostate checked until after they’re 40. But we ladies need to monitor ourselves for cervical cancer, for example, at a much younger age.
But not to distract you from what I said to my friend…
“Ed, the ‘Big D’ (‘Denial’) used to be a good friend of mine. He used to accompany me at all my doctors’ appointments. But the day I was diagnosed with cancer he abandoned me.
For me, the first two months after diagnosis were the worst because I was still waiting for the treatment plan. I did not know ‘how bad’ the cancer was. Once that was figured out, it became easier. In fact, seeing my Oncologist made me feel safe. That is, until my treatments were finished. Then it was a different story. Without the regular appointments and follow-ups and constant meetings with my team of cancer doctors, I felt I was no longer protected. I felt abandoned.
On the other hand, now all of my appointments with my general doctors are nerve-wracking for me. Now that they know about my cancer history, the attention they give me seems slightly different — they pay more attention to me now, which in a way is a good thing.
‘You haven’t gotten your period yet? Come in, we’ll do a sonogram!’ my GYN will say to me the second I complain about not getting my period. Before my cancer she would say, ‘It’s probably stress. Wait for it. It’ll come.’
Of course, it feels a lot more intense in the oncology waiting room. You are there to check for one thing and one thing only: cancer. What makes this process so difficult, unlike previous times when I saw my regular doctors, is that I’ve already been diagnosed with cancer. In my mind, it’s just a matter of time. I just don’t know when and how involved it will be. There is always the fear it will come back.
I fear what my Oncologist might tell me next. Waiting to be seen, I think, ‘What if she sees something suspicious?’ I tell myself. ‘Would she suggest a new scan if I complain about pains? What if she doesn’t suggest a scan and there is something?’ ‘What if my blood work shows something?’ And remember, denial isn’t there with me to keep me calm. Only the Ativan is, and sometimes that doesn’t even work so I gave up taking it.
In the waiting room, I reach for magazines to distract myself, but they are all related to cancer. Couldn’t my hospital have magazines on, let’s say, ‘How to get your groove-on back after cancer’?
And there is something else: I see other cancer patients while I wait. We are all in different stages — some patients may be in a lot more noticeable trouble than me — an opportunity for my mind to get creative, in addition to also feeling a bit guilty.
We all look at each other in the Oncology waiting room wondering what each of our situation is, but we are too afraid to ask one another. At least that’s the culture at my hospital. We can still see the fear when we look into each other’s eyes though. That we all have in common.”
No, it isn’t pleasant to be in an oncology waiting room. But these are the cards I’ve been dealt, I tell Ed.
Oncology appointments never really end. They’ll keep track of my health for the rest of my life. I can always choose not to see my oncologist anymore, or to see her less. She actually tried to put me in the survivorship program at MSK. This meant I would only have seen her if something came up, to which my response was, “No way, Dr. Dang!” I wasn’t even three years out from diagnosis. How could this be? So I am back to seeing her 2x a year. So, the thought of NOT seeing my Onco scares me even more than having to see her.
In a way I think I have gotten used to this “new normal.” It has also turned out to be my comfort zone.
What makes this experience challenging is that I haven’t been able to control the fears and anxieties I feel in the oncology room. And these feelings contribute to how uncomfortable it is to be there. I felt I lost control over my life when I was diagnosed with cancer. I fear it could happen again.