RECOVERY – 1) a return to a normal state of health, mind, or strength; 2) the action or process of regaining possession or control of something stolen or lost.
“The effects of radiation are cumulative.” When the nurse and then the oncologist and then the technicians first made this statement, I didn’t really appreciate what it meant. I felt no effects from the radiation for the first two weeks of treatment and then whamo, it kicked my ass. Likewise, when I terminated treatment, the effects on my body continued to get worse for about two more weeks. The euphoria I experienced when I decided to stop radiation quickly dissipated as my condition continued to deteriorate. “Recovery” was off to a lousy start.
However, the oozing and burning sensations did eventually and gradually ease. The skin at the juncture of my legs and inner thighs, as well as everything between my legs, eventually scabbed and then flaked, all a part of healing. My entire pubic region turned almost black, but gradually and eventually returned to my original skin tone. My pubic hair surprisingly grew back (I had been warned it might not at all). And then one day I was able to press my legs together, to stand up straight, to wear underwear, to wear pants, to sit, to drive! – this was the progression, and each of these were celebrated milestones.
None of this happened as quickly as I wanted it to. I learned to be patient with my struggling body. It was either that or be frustrated as hell. Recovery is a PROCESS, meaning it happens over an expanse of time; you don’t wake up one day feeling all better. If only.
My appetite came back with a vengeance. For about two weeks I was ravenous. I experienced painful hunger pangs, as if I hadn’t eaten in days, even if I’d just had a meal. I regained all the weight I had lost (not too happy about that), but my strength and stamina slowly returned as well.
It took over two months before I could sit again, and then, only on a cushion with a hole in the center. The first day I was able to settle my ass into the driver’s seat of my Prius (rather than lie down in the back seat) was the first day I began to detect a hint of normal in the distance.
Going to the bathroom (six months later) still has its challenges. I don’t like to be far from a toilet because when nature calls, there is often an urgency, and I don’t seem to have the same muscle control I once did. My doctors warned me this could be the case for a year or more.
My energy level was the last thing to “normalize.” It took almost four months before I could run one simple errand (buying groceries, for instance) without needing to come home and take a nap. There was a lot of napping for a while there.
I am six months beyond the end of my treatment (as I write this). I saw my gastro-intestinal surgeon at the four-month mark. She conducted a thorough examination with a proctoscope and declared her findings with a hint of personal pride and satisfaction, “Pristine!” This examination in combination with the results of my post-treatment CT scan, allowed my doctors to proclaim I was N.E.D.
N.E.D. is shorthand for: “no evidence of disease.” It doesn’t mean I’m cured. It only means that IF there is still cancer, our technology, such as it is, cannot detect it. There is no way of knowing for sure. Although there has been admirable progress in the field of cancer, we do not see all. Cancer is humbling in that way. We are not God.
N.E.D. is not perfect, but it’s the best news one can get when it comes to cancer. I choose to emphasize this in my thinking when I find myself wondering about my future, and its longevity. I would be lying if I were to tell you that I do not worry. The possibility of a recurrence exists. I’m hoping for an uneventful medical future. No news will indeed be good news.
Scans are the best way to detect my cancer, but scans are a form of radiation, and my body has endured quantities of radiation that exceed the recommended lifetime dosage. Furthermore, the contrast dye injected into my bloodstream for these scans is too taxing for my kidneys and liver. So there will be lots of blood work. Every three months during the first year, every six months during the second year, and beyond that: every year for the rest of my life. Obviously, if there’s a lump or bleeding or new pain or anything else out of the norm, I’m to let someone know right away.
If my cancer returns, the treatment I received this time around – the cut/poison/burn trilogy – will no longer be on the table for consideration. It will be surgery only. Any more radiation, in the amounts needed to kill the cancer, will surely kill me as well. So no radiation. Chemotherapy, without radiation, is not a focused enough attack. So, no point doing chemotherapy. Surgery will be it.
Colostomy. This is the word I dread. I know; I’ve already been told: “many people lead productive and full lives after colostomies.” I just don’t relish the idea of being one of them. We’ll cross that bridge if and when we get to it.
If “recovery” means getting back to a normal state of health, and if “normal” is what existed before my diagnosis of cancer, then I am still recovering. In many respects, I probably will be for the rest of my life.
When my son died, people asked if I believed my life would ever “get back to normal.” What I learned is that after surviving a life crisis – such as losing a child to suicide or battling cancer – “normal” becomes a moving target. So in answer to that question, no, I’m never getting back to the “old normal.”
But I am learning to accept and embrace a “new normal.”
I’m not quite there yet. I’m still trying out this new normal, MY new normal. I might as well claim it, right? Compared to where I spent the first half of this year, my new normal is indeed a breath of fresh air.
With the onset of cancer something integral is lost: one’s former self. The former Celenia was someone whose body did not have cancer. She was a woman who lived a relatively carefree life, not concerned about the recurrence of a potentially terminal disease. She was a sexual being who wanted to be partnered with another and didn’t fear the immense burden she might become to a loved one. She was a patient who had more faith in the miracles of medicine. She didn’t give daily thought to the legacy she might or might not be leaving the world.
At some point the mourning, bemoaning, grieving and weeping over a version of myself that can’t ever be retrieved will soften. A subtle shift will occur. I know this because I’ve experienced it before. One day, several years after my son’s death, I noticed I was spending more of my time and energy doing something other than feeling sorry for myself, which (don’t get me wrong) I felt totally entitled to do. From that point on, I noticed I was more inclined to propel myself forward, as opposed to yearning to go back.
This has been my version of healing, of diving back into living. If you are on a similar journey, battling cancer or another disease or terrible loss of any kind, pay attention to when this shift happens. And when it happens, celebrate it. This is the moment of the BIG GIFT. The kind of gift that evolves you, that grows your compassion towards others and yourself, that magnifies your gratitude for LIFE because YOU, my dear, have come face-to-face with (and survived – at least for now) the certainty of your mortality.
Here’s the truth. I’m going to die. In my case, it may or may not be cancer that does it, but die I will. I don’t deny it. I don’t even fear it. Quite the contrary; I wake up each morning yelling a quiet “Woohoo!” to myself because, damn, I’m still here. Every freaking day is a victory.
I still struggle though. I still experience anger and fear (take, for instance, this entire 2016 election cycle and all its mishegas); people’s smallness still surprises and disappoints; I still wonder why there is so much garbage on TV and bemoan the continual dumbing down of America; I still agonize over my book and my weight and whether I will ever find true love. In sum, I still suffer.
But I also relish the silver lining. I still get to try new delicious incarnations of chocolate; I still get to cuddle with my dog; I still get to smell the gardenias; I can still dance to Pharell; I still get to hear from and reach out to the people I care about and love; I still get to “ooh!” and “ahh!” over the sunrise and sunset.
You might think that after cancer, the silver lining would be elusive, that everything might be darkened by the horror of this disease. I suppose cancer could have done that to me. I suppose cancer does do that to many precious souls. But I honestly believe I had a choice in the matter.
When I was 24 years old, I lost my boyfriend to suicide. (My son was the second close-to-my-heart suicide of my life). I remember that first night, lying in bed, being held by my best friend as I wept, realizing: “This is either going to make me or break me,” and literally asking myself, “Which one is it going to be, Celenia? You have a choice here. Don’t fuck this up worse than it already is.”
I have no idea where that clarity came from. I’m just grateful I was able to frame the question in such a way that choosing to be broken felt like I would merely be adding insult to injury; I rejected it outright.
I was confronted with this choice again when my son died, and then again when I was diagnosed with cancer. What did I want? To give up, roll over, be pulled under and have the rest of my life story be about how unfair it all is and how much it sucked to be me? Or was I willing to choose life, even if it meant kicking, screaming and clawing for it the rest of the way?
There’s no question that choosing to live can be exhausting. Hard labor. There’s got to be some gumption in you to make this shit work when whoever’s in charge isn’t doing you any favors. But don’t make the mistake of assuming you don’t have what it takes. Allow for the possibility that your calamity (disease, loss, a broken leg, a broken heart) will shift you in some unexpected, bewildering and wonderful way that will allow that best version of YOU (or at least a better version) to emerge.
This has been cancer’s gift to me. Perhaps that sounds trite. It is not my intention though, to belittle the struggle. The struggle is real; the pain is undeniable; the fear of more pain tomorrow and the possibility of an untimely death is ever-present.
I invite you to accept your reality AND take in the good stuff. Because there IS good stuff people! Be willing to seek it out; it may be hiding. Be mindful; watch, listen, take a whiff, put your hand out just in case it brushes up against something delightful. This is BE-ing, LIVE-ing, opening yourself up to what Jon Kabat-Zinn calls the “full catastrophe.”
So grab it, baby, and hold on. For dear life.
NEXT: This ends my series, “The Story I Don’t Want To Tell You (About My Cancer).” Thank you for coming along for the ride. And if this is your first exposure to my blog, be sure to go back to Part I and work your way forward.
I will, of course, continue to write, so don’t be a stranger!
And P.S. All the photos on this blog, in all the posts, are mine, unless otherwise indicated.