My husband always cautions me not to rush into things. He is right, taking time to make sure that your decisions and actions are well thought out is very important, but for me time is just different.
There is a sense of urgency in all that I do. I don’t know when my health, or even if my health is going to deteriorate. His answer is that no one knows that, well having a diagnosis of cancer, especially one that is incurable and inoperable, is a game changer.
I used to joke about aging. Some time ago I decided to age by what I referred to as a 5 year plan. I would stay 35 until I was 40 then 40 until age 45 and so on. Now that joke isn’t funny anymore. A lot of things in my life just aren’t the same. The world continues to revolve, my kids are having babies, new jobs and enjoying college life. All these events have a different feel for me. It is as if I were at the edge of a black void, waiting to get sucked in. You see statistically, the chance of surviving my cancer 5 years is 2% I have already made it through 2 years. A statistic that sticks itself right at the front of my brain. A statistic that I do try to push down, but resurfaces, hence there is a sense of urgency to all that I do.
When we married my husband and I expected to grow old together. We hoped to build a retirement home, one ongoing joke we had was that we would take a motor home to each state in the union and drive 25 miles an hour in front of someone, revenge for having to navigate on and around Rt 1 each summer. We expected to work until late in life as we were certain Social Security would not be enough to sustain us. I would tease our children that they would need really good jobs in order to support me. All those dreams and expectations shattered by an ER visit one cold January morning.
So here I teeter on the edge of a void. I still make plans, just short term ones. Our house savings are gone, eaten up by health insurance deductibles and prescription drugs. Time spent with the kids and their kids are the same, but instead of being behind the camera I ask that others take pictures, so that memories be preserved. My grandchildren have other grandmothers who know of my diagnosis and have assured me they will keep an eye on our precious babies for me.
My husband will cringe to hear about this again but our bedroom carpet is is dire need to be replaced. I have been chomping at the bit to do it. The spouse had to make me promise to wait until after Christmas to begin the project, yet again I had the sense that this project needed to be done immediately, in my mind it had to be done before something terrible happens. He does the best he can to understand, but how can you unless you walk the walk. It is difficult to explain what the void means to me, my therapist was alarmed to have me describe it as a black hole, but for me the black hole is exactly the way to explain what I see when I think of the future. I have absolutely no idea of what to expect with my illness. It is extremely unusual to diagnose someone with small cell carcinoma at such an early stage, the enemy sneaks up upon the victim and attacks at stage IV in most cases. Who knows how long a Stage 1B will last, it just is not spoken of in literature. If any of you my dear readers is aware of writings relating to long term suffers of small cell, please message me.
When I Google my disease, in many cases I find non-small cell lung disease. This is the most common form of lung cancer. There are many clinical trials for non-small cell cancer, I have yet to find a current clinical trial anywhere in the United States. I asked a professional in the medical field why this is the case, the response was quick and brutal, simply there is no money in it. As small cell carcinoma hides until it is too late, until Stage IV, there is no need for pharmaceutical companies to run clinical trials. Even if drug companies were interested in clinical trials they would have no groups to try the medication on. And this disease is inoperable. I explain this to people this way; if you have heard of a person being “opened up and it spread everywhere”, well that’s me. Small cell cancer is also called oat cell cancer, if it is touched, it may break apart and spread to other organs.
So again for me time has become distorted, some days I feel like Doctor Who, in a bizarre telephone booth going somewhere and nowhere at the same time. My faith sustains me, I know what is at the end of my journey, it’s the journey that confuses and causes me anguish. It is so difficult to explain to you what time means to me. I shall just continue to cherish my time.