Where the hell have I been these past few months? Well, ever since my last episode with radiation of a painful bone tumor in my sacrum, I seem to have misplaced my voice. It could likely be lost among my yarn stash, but if only were it that simple. For not only have I misplaced my voice, but I am afraid to venture out into the world. Instead, I prefer to stay inside my little nest. On some level I must think that if I just stay here everything will stay like it is and I won’t hurt anymore. Hey, it’s not like I don’t have cause.
I’ve been in pain since September 2012, the cause of this direct and indirect pain has been the bone lesions in L4 and my sacrum. Last summer the crisis was all about L4: narcotics, bowel impaction, nerve ablation, radiation. The Letrozole I was taking from May through December caused such fatigue and joint pain. With it I had no quality of life and it made working next to impossible. I finally stopped it in December and though it took a few weeks, on January 27 I woke up with energy. Real energy! FINALLY! I felt like myself again. Exemestane was easier on my body and I was hopeful for the future. And then, two weeks later, BAM! The lesion in my sacrum placed me flat on my back. I had only been back at the office for two days. TWO DAYS!
From lessons learned last summer, the process of diagnosis and treatment was faster and I was down for about seven weeks–as opposed to 15. Radiation didn’t freak me out like it did last year and the nerve ablation was a piece of cake. I experienced some brief depression at the end, just as before. But as excited as I was to return to the office I found–and continue to find–it very hard to move out into the world.
To be sure, I feel wonderful. I am able to walk (in moderation)! In some sense, I feel almost as good as I did before I was diagnosed. I stroll along the streets with a real smile on my face (and in the beginning walked so much that I pulled a groin muscle, but I digress). But apart from my walking success, I feel as if I am sitting on the edge of the chair, just ready to rise up, but all I can do is stay in place. And because I feel as if I’m being tossed around in a dryer at the moment, this might be the most incoherent post I’ve written thus far.
For one thing I have an overwhelming feeling of guilt. So many women with Stage IV cancer are in more peril than I.Young mothers in precarious health. Men and women newly diagnosed. Yet here I am feeling wonderful. How can I have any right to feel so great when so many are still hurting, suffering, and seeing that expiration date speeding toward them at lightening speed? Well, none of this is in my control, of course, and I am not responsible for other people’s lives. However, it is not until you have cancer that your capacity to empathize gets thrown into overdrive. When you are well you feel the pain of others. When you feel your own pain, you want to help others feel better. At least that is how it is with me.
For another, I have been living in the “Scorchy Cocoon” for 18 months. That is 18 months of physical pain and emotional distress. Although I was well read and remained current with news and life, it really was Cancer 24/7: doctor’s visits, scans, tests, shots, and treatments. I felt pain all of the time. Every week I had something medical to do. Facebook became my outlet for sanity and keeping up with my friends and family because I couldn’t really travel anywhere–even in my neighborhood. I haven’t been that self-absorbed since I was thirteen. It was, in a very real sense, a kind of prison.
And now that I have been released from that prison and I don’t quite know what to do with myself.
My Job. Folks have been fine without me. I am so proud of my staff as they kept things moving so well. My previous boss had become vindictive and petty and, I believe, scared of my disease. I was afraid I would lose my job (though in academia you could walk naked through campus holding the standard to the 13th Roman Legion and still be employed). But after he left, senior management made it clear that I was an asset to the organization and they wanted me well and in place. My organization has been so supportive and I am grateful beyond measure. But after such a long break, I just naturally question my knowledge and expertise. I have disappeared from annual and local meetings. What is my worth? Do my colleagues feel that I have worth? Do my colleagues want what I have to offer? Indeed, do I even have anything to offer anymore?
Social Life. I want to be with my friends and enjoy the city. But I am cautious. I cannot plan for weeks in advance for I have no idea if I will be well on that date. Instead I live day to day–which is the hardest thing I have ever done. I can make plans, but my friends must understand that I may have to cancel at the last minute. And if I do that I feel guilty and weak. To date, my social life has consisted of the occasional dinner and logging into Facebook. Sex in the City indeed.
Cancer. I am a master at compartmentalization. With all of the baggage of life, I think I over compartmentalize. Indeed, it wasn’t until I began living with cancer that I realized I had a heightened ability to cloak those compartments in complete and total denial. Not just denial, but a veritable black hole of nothingness. I mean think about it: my entire diagnosis is a story of denial. Today, despite my past ignorance, I am in a good place: the two bone tumors that existed responded very well to radiation; scans are stable and improving; my pain is under control with the occasional flare. On paper, at least, I can live again.
One day I rose with my alarm, showered, dressed, and then just sat on a chair in my living room. I was paralyzed. I sat there for about an hour. I wasn’t in panic. Indeed, I sat there thinking of little more than the weather. And then simply decided I would not go in to the office. I undressed and spent the day as I had for the previous 18 months: in my PJs with cats. Once again I felt safe and secure.
But at the the same time I felt a tremendous sense of remorse and confusion. What the hell was I doing? I want to work. I love what I do. Why would I jeopardize not only my career but my entire life? I am no longer in prison, so why is it so hard to live?
After seeking some counsel, I decided that intellectual engagement may well be the thing that dissolves my fear of leaving my cocoon. That is to say that I need to immerse myself in my work once again and rediscover the real joy I feel in doing it. I went to the office yesterday, as a matter of fact, and I do think that this is the thing that will work for me.
As painful and confusing as my 18 month odyssey was, it was also a time of odd comfort. When I was under the weather, so to speak, friends rallied around me. They told me how much I was loved and how special I am to them. Friends and family really wanted to know about me. Gifts, favors, and treats arrived with love. I surrounded myself with soft blankets and comforting food and drink.
However, as I improved, many of those things naturally fell to the wayside with the expectation that it was now time to move on with my life. But after such a long time in crisis, I am now left raw and vulnerable. I need to relearn my limits, build my confidence, and live with some modicum of comfort with my disease. This transition from intense illness to wellness is a potentially fragile time for some of us–and we may not even be aware of it until it is upon us.
Intellectual engagement may be my path to easing the uncertainty of my future. Only time will tell. But I cannot possibly be the only person to experience this paralyzing fear of wellness. I just can’t be.
Physicians are focused on their specialty, fair enough, but they might do well to consider the emotional state of their patients as they transition from acute crisis to wellness (as well as wellness to illness). It may be a time of jubilation and excitement. But those feelings are expected to some degree, are they not? I know I told everyone how excited I was to return to my life. And I was. But under it all I was afraid and, even more so, embarrassed to admit that to anyone–even to myself.
I am confident that I will emerge from this mentally healthy and engaged. But like most things I have learned as a result of this cancer experience, transitioning from protracted illness to wellness is a delicate shift. And I don’t think it is on anyone’s radar. When faced with a challenge like this we need to be kind to ourselves first and foremost. Listen to that inner force–if it doesn’t feel right, then it isn’t. Our physicians need to be aware of this as well and ask their patients about how they feel about this transition and if they need help moving through it. Otherwise we may well find ourselves moving from one prison to another. Not only will that continue to cause mental distress, but that will not aid our physical condition.
No one deserves to live in a prison of uncertainty and fear. Least of all anyone who has been hit with cancer, regardless of type or stage. Ain’t nobody got time for that!