In my first cancer post I wrote about the cancer diagnosis.
“That is just a great big whole lot of nothing, and a great big whole lot of everything.”
The “great big whole lot of nothing” stepped into our world and grabbed us by total surprise. While I live in a world of cancer awareness, I have never learned about it on a personal level. So this
five six-letter word was almost totally foreign to me. I have listened to your stories in what I thought was empathy. Now I understand that I was listening in ignorance.
Some of you have used the word “terminal.” And to my mind, that means that a person is going to die “soon.” I looked up the term and find that I’m kind of on the mark.
Terminal illness is an incurable disease that cannot be adequately treated and is reasonably expected to result in the death of the patient within a short period of time.
But let me also say, that some of you who were “terminal” obviously didn’t understand the definition, or you are simply non-conformist. Because you yet live! Praise to our God!
The problems with my education come with the word “treatable.” I know people who have had cancer for an incredible length of time and they are in otherwise good health. I suppose that being the optimist that I am, that is what my brain chose to target as my definition of “treatable.”
The term “cure” means that, after medical treatment, the patient no longer has that particular condition anymore. Some diseases can be cured. Others, like hepatitis B, have no cure. The person will always have the condition, but medical treatments can help to manage the disease.
In this explanation of “treatable” the wording leads me down a path of longevity. However, “treatable” in lung cancer, basically means that the medical community will do what it can to “stabilize” the disease and keep a person comfortable. It is focused more on palliative care issues:
Palliative care (pronounced pal-lee-uh-tiv) is specialized medical care for people with serious illness. This type of care is focused on providing relief from the symptoms and stress of a serious illness. The goal is to improve quality of life for both the patient and the family.
So when we received the first diagnosis I had an improper grid through which to push the information. And quite honestly, some of the conversation soon just started to sound like Charlie Brown’s teacher during a particularly rigorous lecture.
At our meeting on Wednesday, the order of the visits was booked poorly. We saw the oncologist in charge after the neurosurgeon but before the radiologist. The neurosurgeon was very optimistic about his portion of the care. We gladly chose to wear his optimism and were feeling pretty good about things. Because, remember, we were already thinking that we would be living with long term treatment. (No, I didn’t do any research in the eleven day interim.)
Then we saw the oncologist in charge. And from the moment she started talking, things felt different. Finally, Bud asked her to put a timeline to this event. And our optimism was shattered. Once again, we were numb and we just couldn’t process much of what she said after that.
From there we went to the radiologist and by then, the questions were coming, that poor man. He knows his radiology, no doubt. But he was getting medical oncology questions (my vocabulary is already changing) and his base of information was greatly reduced. The interchange was, thankfully, sufficient to provide us with the information that we needed for his part of the care.
And I am back to my statement that the cancer diagnosis is a “great big whole lot of everything.”
It is incredible how this enormous vacuum opens up into your sphere of living that seems totally empty; yet it is so overwhelmingly full of the unknown that life as we know it stops. This crowded void takes over every aspect of your life, if you let it.
Suddenly, the most consequential event in your life is as mundane as what you’re serving for lunch. Cancers grow better on some diets than others. Laying out a plan is much more difficult than actually following the plan. All this planning takes a great deal of time and research, honestly, agreement.
Your time has suddenly been invaded with medical appointments. The consultations are long, the treatments are frequent, and the drive time is lengthy.
Your schedule is disrupted to the point that now you are going to have to give up some things that you may have been doing for years. You need to accommodate this despised interloper; it is a cruel invasion.
And you are going to have to prepare to see your loved one immediately “get sick” due to treatment. In our case, the only presenting symptom is some back pain. But once the regimen begins, the treatment is sure to have side effects; and those are most likely going to reduce the quality of life that we are now experiencing. Dealing with the idea that the treatment is the thing that is going to transform our lives and bring my husband low seems to be the most difficult right now. Something that is supposed to give comfort and maintain a quality of life is actually going to make him uncomfortable and reduce his quality of life.
Lung cancer – when it is presented should be exposed as the killer that it is. Tell me that it’s treatable if you want, but it absolutely cannot be adequately treated. Just tell me that it’s terminal. That is a grid that I can work with.
1 – Wikipedia, retrieved 10/20/2017: https://en.wikipedia.org/wiki/Terminal_illness
2- Get Palliative Care.org, Retrieved 10/20/17: https://getpalliativecare.org/whatis/