Saturday, June 17, 2017
I woke up today with the knowledge (neither the fear, nor the feeling…but the “knowledge”) that my cancer was going to kill me -- and sooner rather than later. Oddly, it was not a shocking realization and nor a particularly threatening one. I am not afraid of dying or of what comes next. I’m even comfortable with the process based on an explanation given to me by my oncologist.
The knowledge did however deeply impact my perspective and I’ve been distant and removed from everything and everyone since. To put it bluntly, it feels as if I am already dead.
My body is still here, in the physical, of course, but it is not “mine” anymore. Instead it belongs to the medical community. They poke it, cut into it, and insert filters and ports and other mechanical devices to monitor the progress of my disease and to make their jobs easier. Once a week they poison it with strong chemicals aimed at killing the fast dividing cancer cells. Those same chemicals also damage/destroy healthy, life sustaining cells. Whenever I experience a symptom related to treatment I am told to add more chemicals to the mix. Better a series of pills than the experience of nausea, headaches, no energy, sleeplessness, restless legs and joint pain and so on.
If I am lucky enough on any given day not to have any symptoms requiring additional pills, I find that I am in withdrawal and have issues with not having those drugs in my body. How did I get talked into agreeing to deal with my cancer in this way? Should I continue treatment or “knowing” I’m going to succumb to cancer eventually, stop treatment and let nature progress on its own terms?
While my body functions in conjunction with the prescribed medical treatments, it is not at all aligned with my spirit.
My spirit realizes the vessel in which it has been experiencing physical life is soon to expire. It has not yet found a new home, though it no longer wishes to reside in my body. Instead, it hovers just outside, watching and waiting to make a decision as to whether to wait until the end to move on or to perhaps cut its losses and move on now to whatever is next in a spiritual life. Is there anything more for it to learn and does it have anything more to give?
This “neither here nor there” situation makes it difficult to go easily about my day. It makes it extremely difficult to interact with others. I do not know how to spend my time. I do not have the desire to do anything ordinary. It feels false and forced to try and create a new experience. There is nothing I want or need and nothing I want to do or see. I am disconnected from what I’ve come to know as myself and by extension from everyone and everything else.
So it’s time to re-evaluate what quality of life means and to give some thought on what I might have to look forward to and/or to experience in my remaining months. Is it worth continuing treatment or should I stop postponing the inevitable and let cancer have its way?
Monday, June 12, 2017
A woman dressed in an evening gown is sitting at a bar, sipping a cocktail and kittenishly looking at the representative figure of death in its black robe and with its sickle leaning against the back of his chair. “Are you flirting with me?” he says tenuously…
I’ve always had a slightly dark sense of humor and can and do laugh at what some would consider the more serious aspects of life. I have laughed my way through life, job loss, major mishaps and the ugly part of aging, so it is no real surprise that I have a sense of humor about living with cancer. I can’t help myself – there are just some funny things associated with my cancer and when I come across them or experience them, I have to laugh.
Sadly, I am often laughing alone.
Not everyone will think the scene at the beginning of this blog is funny. Some will not believe that any aspects of the cancer experience can be taken lightly. There is a definitive line between humor and insensitivity, to be sure, and I hope not to cross it in any way that truly offends another or diminishes their deeply held beliefs in any way. I am (mostly) careful not to make fun of cancer in a general sense nor around anyone else who may be stricken. I do not find humor in how anyone other than me deals with it or in how it deals with people other than me.
But still, there are parts of having cancer that do indeed create awkwardly funny moments.
In talking with my best friend and sister just yesterday we got on the topic of dieting and healthy lifestyles. With summer upon us everyone wants to shed some weight and create a better body image. They talked a little about long term plans (it takes time to lose weight) and where they wanted to be on the scale for future events.
I wanted to say something like, “Unfortunately, I may have to wait until after my cremation to achieve a smokin’ hot body!” (not an original pun by the way, I’m sure I read it somewhere) but I could not share it. Though it made me chuckle just to think of it, I did not think my sister nor my friend would find that funny at all. So I kept it to myself and we missed a moment we might otherwise be able to look back upon and smile.
Humor is a self-defense mechanism, no doubt – and making fun of my cancer and its possible outcomes is just another tool in my “deal with it” toolbox. It is good for me/necessary for me to have a sense of humor about myself and my situation.
Humor has medicinal benefits as well. It relieves some of the stress of my diagnosis and can make my otherwise intolerable situation tolerable. When laughing, I increases air intake, and for someone so frequently short of breath, a good deep inhale is akin to deep massage. Laughing releases endorphins which may help reduce my pain and will ultimately lift my mood, providing a more positive base from which to deal with things. When I laugh, I feel good. When I can laugh at myself and my situation, I feel more in control.
Humor can bring us together, minimize the stress, create shared moments and good memories. It can help ease pain and even lower blood pressure. It can and will make my days brighter and my diagnosis easier to bear.
So, I’m going to keep on crackin' jokes and laughing and I encourage you to laugh along with me. Heck, crack a few jokes of your own…I promise to keep my sense of humor alive and well.
Thursday, June 8, 2017
I do not sleep much these days. Not in the normal, six to eight hours a night kind of way. Instead, I nod off at an appropriate hour and wake up sometime after 1:00 am (often and oddly at 1:11 a.m. exactly) and remain up until I am called back to bed.
I am not in any discomfort and nor am I stressed. My thoughts are not uncontrollably or randomly firing around the issues of “what if?” or “what next?” I am not worried about anything in particular. Instead, I am calm and relaxed and slightly energized. It is as if a very quiet voice is whispering to me, “Come, sit with me in silence and simply be.”
And so I do. I will go outside on the deck and wrapped in a blanket on a cozy lounge chair, gaze at the night sky, and watch the moon move slowly across the black velvet background dotted with sparking lights of stars dancing in the distance. During this time, I try to remain as quiet as possible and listen to what I am meant to hear.
Tonight, I “heard” that my cancer diagnosis is not a thing to be feared or dreaded. It is not a curse that will render me lesser in the months and years to come. Instead, it is a blessing that will bring yet unknown joy and unexpected learning that will make me “more” when it is resolved.
It is said that a wound is the place where the light enters you. Perhaps my wound, my cancer, is allowing a light I’ve yet to know seep into my being and illuminate emotions, thoughts, and experiences I’ve yet to know. Perhaps my condition will deepen my relationships to family and friends in new and profound ways. Perhaps I will leave myself long enough to be free of all the deeply ingrained, self-limiting thoughts and behaviors, the long-instilled habits and patternistic thinking that has kept me from becoming who I am meant to be and I will emerge from this experience a kinder, wiser, more thoughtful, creative and limitlessly loving person.
Tonight I’m returning to bed with a sense of overwhelming peace and calm and an anticipation of new and deeper awakenings to come.
I cannot yet know where this journey will take me. I only know that I am not where I was before my diagnosis and that I am on a new and unchartered path.
It is one I look forward to walking and hope you walk it with me.
Tuesday, June 6, 2017
We are all familiar with the circus act where an animal, usually a small dog, is trained to jump through hoops held by the circus master. The hoops vary in size and in placement and as the circus master waves the hoops, tosses them in air or sets them on fire, the dog bravely and enthusiastically jumps through each one. What makes the dog do this? Daily training and the anticipation of a delicious reward at the end of a jump and perhaps a bigger reward at the end of the show.
Having cancer, I have often felt like a circus dog, only instead of jumping through hoops, I am jumping through hopes. At the beginning of the cancer show, the hopes are large but unlike in the circus, not so easy to jump through. As time goes by they get smaller and more specific and the likelihood of making it through is lesser. Still others are set aflame and the danger of jumping through is palpable and the risk of not making it without being burnt or scarred is great. Among the hopes one has to jump:
- I hope it's not cancer
- I hope it's early stages
- I hope they get it all in surgery
- I hope it hasn't spread
- I hope chemo isn't too bad
- I hope I don't lose my hair
- I hope they got it all
- I hope I am in remission
- I hope it doesn't recur
There are other hopes, of course. New ones appear on a daily basis (I hope I’m well enough today to shop for groceries, I hope the people coming to visit do not notice I’ve been unable to clean the house, I hope my insurance covers the next treatment, and so on….) and each one brings its own challenge and incentive.
Each jump gets me closer to my reward. If I successfully jump through these hopes there is a 30% chance of living through the next two years and if I make it through that hope, there is a 20% chance I can go another 3 years with or without recurrence.
Frankly there are days where this is not much of an incentive and garnering the energy to jump through yet another hope seems impossible.
And yet, like a trained dog, I jump. I jump because I am trained to believe that modern medicine and faith and sheer will can rid me of this cancer. I jump because the fear of not jumping outweighs any concern I might have of jumping and failing. I jump because they are not just my hopes, but the hopes of everyone I love and who loves me and the thought that I might let them down by refusing to jump is just too much of a burden to bear. I jump because I have to.
Sunday, June 4, 2017
Since the day of my diagnosis, I find myself frequently lying about my cancer. I wish I could stop, I wish I could share with those closest to me what I am feeling and thinking, but I cannot. Cancer has made me a serial liar.
In the beginning, when all I knew was that the biopsy had come back malignant and that further tests were necessary, I thought that a little lie about how I felt would buy me some time and space to think clearly about what I was facing. Telling family and friends that I had cancer was difficult. Hearing the shock, fear and near instantaneous grief in their response was harder still. I wanted to comfort them, to ease their stress and to help them move forward peacefully and with some grace. I found that if I said I was unafraid and had every confidence that this would be but a temporary issue in my otherwise long life it helped the people I love deal with the diagnosis and alleviated some of the stress that comes with learning that a loved one has cancer.
Lying worked. When they believed I had this under control, they were able to relax and gave me the space I needed to deal with my diagnosis.
As time passed and more information became available (additional tests showed that my cancer was in later stages, my oncologic consults indicated a long-term treatment protocol was necessary and included surgery, chemotherapy and radiation, my chance of survival was narrowed to only 30%, etc.) I found that the lies became more frequent and more personal. The more emotional the reactions among my support group, the deeper the lies I told about how I was coping. I would boldly lie about my experience to make them more comfortable, lie about my faith in the treatment protocols and the possibility that they would result in a “cure” to ensure they did not lose hope, and lie about my plans for the future so that they could comfortably assume we would have one. I believed these were things they wanted to hear, things they needed to hear to be able to go about their daily lives without feeling depressed or helpless or constantly worried.
After a while I grew tired of lying and had little energy for charades. I thought perhaps that I could share my true feelings with a few people closest to me. I tried on several occasions to be totally honest about the pain, the uncertainty, the fear and my lack of confidence/hope that I could one day say I beat cancer. My honest feelings were met with fierce resistance. “Don’t feel that way.” “Of course you’re going to be fine.” “You’re just tired/hungry/in need of a pill.” “You need to remain optimistic if you are going to beat this.”… and so on. The truth is, no one wants to deal with the very real likelihood that I may not survive cancer or that if I do, the treatment process is long and hard and often debilitating.
Were they lying to me as well – just to keep from having the tough conversations? Probably. Do they really believe that it will all be fine and that faith and optimism are enough to heal me? Probably not. Will we continue to lie to one another until such a time where I either get the “all clear” or the news that there is little more that can be done? I’m guessing “Yes.”
I can’t fault anyone for not wanting to hear what it is really like or what I honestly feel and nor can I fault them for lying about how they are dealing with it. None of us wants to be in this position and we all seek balance and comfort. It’s easier to have hope than to face reality. It’s easier to feign confidence in a cure than it is to share your emotions about the possibility of your death. So we lie, to each other and to ourselves.
Lying has now become part of my everyday life. I lie about almost everything cancer related. I lie about how much energy I have. I lie about how much pain I have. I lie about how I feel about losing my hair or how sick I feel after chemo. I lie about what it is like to be poked with needles on a daily basis, to find little or no pleasure in things I once enjoyed, to be unable to concentrate on much of anything and to sleep through the night. I lie to acquaintances, to friends, to family and to my husband. I even lie to myself on more occasions than I care to admit. (I do not however lie to the doctors or others on the medical treatment team with regards to physical symptoms or status. Admittedly, I do lie to them as to how I am coping, primarily because there are often others – husband, sister, friend, etc. in the room with me when those questions are being asked and I must keep up the pretense.)
Cancer has already taken much from me and now, it has made a liar out of me.
I need a place where I can tell the truth about what having cancer feels like and what it is doing to my life. I need a place to “be” with my fear, my pain and my doubts about the future. I need a place to deposit my more unpopular thoughts so that I can be more positive and hopeful in my every day interactions. This is that place. It will be my therapy and if ever I decide to post, perhaps it will be yours, too.
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