A Ticket To Ride
A cancer diagnosis gives you a ticket to a ride on an emotional roller coaster that you really don’t want to take, but when you get the ticket you will find you have no choice. To prepare for the ride you will have to learn a whole new vocabulary. While initially you will find the beginning of the trip so intense, and the emotions associated with it so overwhelming, you will pay little attention to the words the doctor is using, but as a caregiver, and as a lay person, you owe it to your patient to learn the words associated with the disease, and by doing so you can be a calming influence during difficult times. The patient, and this is the only categorical statement I will make regarding this disease, never hears exactly what the doctor is saying, and it is left to you, the caregiver, to do so.
It is very important they know you are there and hearing what they don’t. Always.
After a quiet Tuesday night, we met with Joanie’s doctor the next morning, and began learning the new words that are associated with this particular disease and its treatment.
We were told the results of the biopsies taken yesterday were back and, as we expected, it was “most likely an invasive large cell squamous carcinoma of the cervix.” Cervical cancer, as we were told yesterday.
Joanie and I were still trying to process what we’d experienced on the first day, and now all we could ask her doctor was the same question that Joanie had asked me at lunch yesterday, “What do we do now?”
Her doctor told us that she would like Joanie to be admitted to the hospital the next day for examination under anesthesia and the possibility of performing a cone biopsy as part of what they call a staging process. By “staging” the cancer that gives them an idea of what type of treatment will be pursued. That was to be the first of many terms we were to become familiar with over the coming years.
The term, cone biopsy, as we learned, was a procedure whereby a cone-shaped wedge of tissue is removed from the cervical canal and then examined under a microscope and it can determine the exact location and size of tumor. Depending on the amount of cancerous tissue, it is also might be possible to remove some healthy tissue around it so there would be a cancer free margin afterwards. Should that be the case, it might be there would be no need for further treatments. In short, a cone-biopsy could take care of the problem, assuming we were dealing with something that had been caught soon enough and cancerous tissue hadn’t moved off the cervix. At least those were the words we heard, and with them came the thought, ‘could she be so lucky?’ We would have to wait and see.
We were also cautioned by her doctor, that if there was any involvement of the upper vagina that would change the game plan.
It was about this time when Joanie’s attitude about her situation began to emerge. For the first time I heard her say she would do whatever was necessary to beat this, and she was praying tomorrow would the first step towards putting this behind her. It was an attitude that would only grow stronger as the years went by.
We appeared at the hospital the next morning, Thursday, May 9th, the day before her birthday, and Joanie was admitted for the examination and possible cone-biopsy. This, by the way, was to be the first time Joanie was to be put under anesthesia for the purposes of doing a medical procedure, but it would not be the last. The roller coaster took off from the platform, and all I could do was wait, something caregivers in these instances do a lot of.
As a caregiver, everything is out of your hands at this point. They tell you to go the surgery waiting room and the doctor will see you when things are done.
As a caregiver, you will find that in the waiting room, time slows down. Seconds become minutes, minutes become hours, the magazines are all six months old and the coffee is bitter, and it is all because you feel so helpless at the time when the person you love needs you the most. It was a feeling I was to experience many times both in Bismarck and Minneapolis in the years ahead.
The “procedure,” as they called it, was uneventful to use their word, but we were to be disappointed when we heard there was some involvement of her upper vagina, and a cone biopsy would not be the answer and solution we had hoped for. However, more tissue was taken for further biopsies and staging, the results of which we would not know until the next Monday. We might get a definitive answer about what comes next then, but we also were to learn that definitive answers regarding this disease are not always easy to come by.
So, we would spend the weekend of her 46th birthday trying to think good thoughts and not dwelling on the situation Joanie was facing. Considering this was the most dire health issue she had dealt with in her life, she exhibited a remarkable ability to put it aside during a period when, regardless of what she was feeling, nothing could be done about it anyway. It was as if she knew that openly worrying accomplished nothing, and was wasted energy that was better directed in a positive direction when we had more answers. And she didn’t even have a background in psychology or counseling, but she knew.
That weekend, I began to use my background as a reporter, and knowing how to do research, I sat down at our computer and started to search. I had always known my way around a library, but the internet made this research much easier. It was in that process of searching I would begin to learn more than I ever thought I’d know about this particular women’s health issue. It was doing this preliminary research when I began to become, as a non-professional, more familiar with the vocabulary of this particular form of cancer.
Out of this beginning came the realization that the individual characteristics of the disease, the individual involved, the family health history of the individual, the location of cancerous tissue, the degree of invasion, the age of the individual, the current health of the individual, whether it was a slow moving cancer or an aggressive type, the staging of the cancer, and whether or not the cancer had entered the lymph system, were just some factors that made this process more complicated than I had ever imagined. And, that list doesn’t even cover all the information needed as the doctors try to figure out how to treat it.
I had always figured that when it came to cancer, you had to know three things, “where the tumor was, how big it was and had it spread from the point of origin?” Then, knowing those answers, the next question was, “how do we get rid of it?” That shows you the depth and breadth of my knowledge at that time. I was being disabused of my simple assumptions regarding this disease the more I read, and it was being done so quickly.
I soon came to the conclusion that while every cancer is different, every individual is different, and cervical cancer, or any cancer, for that matter, in one individual won’t be the same in one person as it is when it manifests itself in another. All of which makes the process of treatment more complicated.
So, we would wait until Monday to see where the roller coaster would take us next.