Monday Night Cancer Club is a Daily Kos group focused on dealing with cancer, primarily for cancer survivors and caregivers, though clinicians, researchers, and others with a special interest are also welcome. Volunteer diarists post Monday evenings between 7-8 PM ET on topics related to living with cancer, which is very broadly defined to include physical, spiritual, emotional and cognitive aspects. Mindful of the controversies endemic to cancer prevention and treatment, we ask that both diarists and commenters keep an open mind regarding strategies for surviving cancer, whether based in traditional, Eastern, Western, allopathic or other medical practices. This is a club no one wants to join, in truth, and compassion will help us make it through the challenge together.
A year ago this Wednesday, I underwent surgery as the first line of treatment of my endometrial cancer. I lost several body parts that were extremely important to me, namely most of my reproductive organs. Even though I understood and agreed with the decision to have surgery, I still mourn having a permanently altered body. I also know more than I did a year ago about the short- and long-term consequences of surgery, and I’ll address those considerations as well.
Some of this material I’m recounting in this diary might sound familiar. It’s territory I’ve visited before, particularly when I’ve discussed how shocked and dismayed we all were by the staging results of the surgery. In previous posts, however, I’ve written more about chemo and its effects on me, especially its relative failure in stopping the spread of cancer cells. In this post, I intend to focus more on the loss of body parts and the physical and emotional effects that this loss has had on me. I hope by doing so that I can offer a platform for others to share their reactions to having a body that’s now different from what it used to be.
From the perspective of a year (at least on the first part of this process), I now understand my reaction to this permanent somatic alteration to have passed through three stages. The first was urgency, the conviction that surgery was the necessary remedy that couldn’t happen quite fast enough. The second was recovery, the encounter with what was different from before, whether anticipated or not. The third was re-integration, the coming to terms with how things have changed (and might continue to change).
Please join me below the stylish Kos curlicue for my description of these three stages as I’ve experienced them to date.
1. Get it out, and get it out now
The decision to have surgery seemed to be a foregone conclusion once I had the results of my D & C (dilatation and curettage of the uterus) and hysteroscopy (visual inspection of the interior of the uterus), performed on 1/14/11. The pathology result from that procedure confirmed that I had endometrial adenocarcinoma, grade 2. That cancer type is the most common type of cancer of the endometrium (the lining of the uterus). The grading has to do with the degree of abnormality of the cancer cells: grade 2 meant that mine was less aggressive than a grade 3 tumor but not as slow-moving as a grade 1. My first consult with the oncologist took place on 1/24/11, and the surgery was scheduled for 2/22/11. (I could have had the surgery as early as 2/8/11, but given the demands of my work schedule and the school break schedules of my husband and daughters, I asked if the later date was a problem and was told no.)
At this point, I had no objection whatsoever to having this major surgery. The D & C had considerably reduced the bleeding I had suffered for over six months, but I still had severe uterine cramping almost constantly. When I didn’t have actual cramps, I still felt a kind of activity in my uterus that was deeply unsettling as well as uncomfortable, even before I had the diagnosis from the D & C. It was as though there was some rumbling going on, perhaps my concrete sensation of the activity of the tumor. Furthermore, for the last six weeks or so before the D & C, my vaginal bleeding was so heavy and profuse that it continually triggered memories of having been raped as a teenager. Considering all of these factors, then, it is probably not surprising that I was not ambivalent at all about having the procedure done, and done quickly.
This may not be true for every woman who has endometrial cancer, but by the time I had the D & C I felt that I knew what the diagnosis would be. I had felt so ill—so fatigued and depleted—for so long, I expected the most serious news. In any case, despite my fundamental fondness for my uterus and ovaries, I was eager to have them out and to start to return to health. Being 52, I had no more prospects of bearing another child, and natural menopause was likely upon me anyway, so I was not reluctant to lose the ovaries as well.
Technically, what I had on 2/22/11 was a daVinci-assisted total vaginal hysterectomy and bilateral salpingo-oopherectomy plus selected lymphadectomy. In lay terms, that means that my oncologist-surgeon used a robotic device to remove my uterus, cervix, top of my vagina, both fallopian tubes and both ovaries, and several lymph nodes in the pelvic and para-aortic regions. The major incision was internal, at the top of my vagina; the five visible external incisions (each under an inch long) on my abdomen were made to allow the insertion of the instruments.
Some surgeons still prefer to use the traditional approach, employing a full abdominal incision (laparotomy), because they think it gives them more visibility of the internal organs. My gyn-oncologist prefers the daVinci method for several reasons: it’s less traumatic for the patient and the daVinci device (once someone is proficient with it) can be very, very precise. It also provides 10x internal magnification. I’m sure there’s a learning curve in using this kind of technology. My gyn-oncologist has performed hundreds of these, I expect, although I admit I have never asked her precisely how many. It makes a difference, of course, that she’s on the staff of one of the Comprehensive Cancer Centers in my state and also one of the other major hospitals in the area. The former institution is very, very well funded and proud of having cutting-edge equipment.
I have had several complaints about my gyn-onc’s communication style over the year that I have known her, but I have no complaints about her proficiency as a surgeon. The only glitch I recall hearing about involved her attempt to remove one of the lymph nodes in my pelvis that appeared to be cancerous. (It was analyzed during surgery to confirm its malignancy.) Apparently it was stuck to my left iliac artery in such a way that to fully remove the node would have meant slicing into the blood vessel. In her dry way, she told me she figured I’d prefer to keep my leg, so that node was merely resected as much as possible. (The remnant lit up with my first two CT scans post-surgery—but not with the third. So that’s one marker of progress which I’ll discuss in more detail later on.) But this was not her fault; it’s likely to her credit that she could remove as much of it as she did. The surgical “debulking” meant that there was no evidence of cancerous tissue larger than 2 cm, which is a standard marker for later treatment success.
Unfortunately for me, the presence of cancer in that node and in three others of the eight total that she removed meant that the pre-surgical, clinical staging of the cancer was overly optimistic. When I went into surgery, we all expected me to come out on the other end with a comparative All Clear!, with no indication of spread. Clinically, in other words, the oncologist diagnosed a Stage I cancer, given the feel of my organs. Surgery and subsequent pathology indicated instead that the cancer had progressed to FIGO Stage IIIC2, determined by the finding of malignant para-aortic lymph nodes. That meant an entirely different level of severity, with different and more aggressive treatment likely, and of course different aggregate odds of long-term survival.
There are videos on line if you are really curious to see how the daVinci procedure works. I can tell you very little about the actual procedure myself, of course. In fact, I was so out of it that I don’t remember anything about how I got to the hospital (with my husband, at 5:30 the morning of the surgery) or for that matter much about the couple of days beforehand. I’m assuming that this is an effect of the anesthesia, and that these memories are simply gone forever. I do know that the procedure entails inverting my body and pumping my abdomen full of carbon dioxide, to expand the field. I must have looked horrible for the first several hours post-surgery, because I do remember that my face felt swollen and my eyes were so puffy it was hard to see. The surgery took about five hours, which was a little longer than originally anticipated. My pain post-surgery was minimal and managed well with a morphine drip (though that turned out to have a depressive effect on my respiration). My first night post-surgery was quite tolerable overall thanks to the deeply solicitous care of my older daughter, who slept in a chair next to me (because I had a female roommate and thus had to have a female companion), and my night nurse, who has been working on the oncology floor for thirty years and since has become a friend.
I was discharged from the hospital the afternoon following my surgery, showing no signs of complications or difficulty—but not until after I had a very uncomfortable conversation with one of my oncologist’s fellows. Later, when I went back into the hospital with neutropenic fever, this particular fellow earned the epithet of “Dr. Houselet,” and there were clearly signs of that attitude at this early stage. I was pressing him for information about the surgery, particularly any indication of spread, and he refused to give me a direct answer regardless of how hard I pressed. I learned later that my oncologist had not expected me to be discharged quite so soon, and had thought that she would be able to give me the bad news in person. Instead, she had given my husband the bad news while I was in recovery, and he was left to his own devices for a while since she asked him not to tell me himself. What’s worse, when my husband did speak to me while I was emerging from the anesthetic, I had also insisted to him that I knew that something was wrong, worse than we had anticipated. I have no recollection of this conversation at all, nor do I know how I “knew” that this was the case. Perhaps from hearing conversation among the doctors during surgery? In any case, having to hold this secret made for a torturous 48 hours for my poor dear husband.
During this stretch he was blessed with the support of a long-time friend of his who is also a Ph.D. nurse, and of a long-time friend of mine who is a D.O. Their conversations with him, grounded in their professional expertise, helped get him through. They both encouraged him to emphasize the positive aspects of my condition—my general good health, my resilience, my extended support networks—instead of focusing on the discouraging aspects—the cancer’s spread. For the first time, he began to hear and understand the seductive risk of looking at statistics. As the cliché has it, we are each ultimately a statistic of one. So, so hard to hear that in connection with your beloved, I am sure…but that is his part of the story, and at some point in time he will address that himself.
Even in the first day or two after surgery, then, it was becoming clear that the procedure itself was only meaningful in a larger emotional and social context. I have been fortunate to have relatively good medical care, almost entirely paid for via health insurance; a loving family; and great support networks. All those made the physical consequences as easy to bear as possible, from what I can tell.
2. Now what? Immediate and short-range after-effects of the surgery
Between the dulling effects of the anesthesia and the shocking effects of the stunningly bad news of the spread of cancer to some of my lymph nodes, I was pretty out of it for the first couple of weeks after surgery. I spent a lot of time in bed, sleeping or resting, or in a chair in my dining room that caught a lot of light through the south-facing windows. My husband and daughters were very attentive and thoughtful, even though they were devastated. My two cats kept me company almost 24-7. We had many meals supplied by friends and associates, though at this point I couldn’t tell you what they were. It was a pretty snowy winter for us last year, so I didn’t go outside much for that first month or so. I couldn’t manage much besides resting, breathing, eating, eliminating, and sleeping. Oh, listening to music was good. But reading was mostly beyond my capacity.
I don’t remember having much pain. I had a “belly band” to support my abdomen, but the internal incisions did not seem to affect my abdominal strength very much at all. I was relieved that my uterus was gone, because all that fulminating activity had ended. My belly felt quieter and more peaceful than it had for years. It was reassuring on some level to have the major tumor out of me simply on that basis. But at that time, I also believed that the chemotherapy I’d be undergoing soon would be primarily a mop-up process, to take care of any loose cancer cells floating around. I didn’t realize until some time later that the removal of the primary tumor typically allows any secondary tumors a chance to develop.
I relied pretty heavily on Ativan at that juncture, because I was terrified. The surgery was not sufficient, as we had expected, and I had difficulty getting my mind around the next recommended round of treatment—namely, chemotherapy. I had some dialogue with the oncologist about the particular cocktail she recommended for me, but it certainly wasn’t enough to change her thinking. At that juncture, I knew nothing about the possibility of having a chemosensitivity assay done on some of the live tumor tissue, which was a procedure that would have had to be initiated during the original surgery. I don’t want to go into much detail about it here, but it’s one of my major regrets about the whole treatment regime that I did not have the chance to have that done at the earliest opportunity, before my first-line chemo. Who knows what difference it might have made?
Because my gyn-oncologist had imposed a six-week restriction on intercourse, and because I had to start chemotherapy right away—a mere three weeks after the surgery—that meant my husband and I were not able to see how things worked until after I was already losing my hair. That seems like a double insult now, but then, aside from a certain curiosity and wistfulness, I don’t recall much enthusiasm about the prospect of resuming intimacy. There’s so much you simply don’t think about at a time when survival is the first priority. And at that point, we were still very much in crisis mode. Every day seemed to bring a new challenge for those first few months, let alone the first six weeks. Some of these were logistical, simply the fallout from having too much to do by too few people in too short a time. But others were emotional and psychological. In retrospect, I realize that the hormonal changes my body was undergoing, having suddenly lost both ovaries, must have had an extra dampening effect on my mood. But those of you who’ve struggled with maintaining emotional equilibrium may recall that when you’re in a funk, you often refuse to believe that it’s temporary, or contingent (especially not on physiological factors!), or remediable. To complicate matters further, six weeks post-surgery I had a bad reaction to the chemotherapy that not only landed me back in the hospital but also, at least indirectly, led to my losing my job.
Obviously, these additional worries did not facilitate a sense of personal well-being and safety. Experiencing a sexual trauma in adolescence had had grossly pervasive effects on my self-confidence physically and emotionally. After many years of very hard work, I thought I had reached a point of being able to trust my body and its capacities. I took considerable pride in being able to conceive without much difficulty, and then to deliver both my children vaginally, without drugs. (I know, it’s not a competition, but the sense of agency I gained thereby was pretty powerful for me.) The cancer itself – ironically enough, one arising from my reproductive organs – threw that faith completely into question. Then, coping with the consequences of surgery and chemo put to rest any lingering traces of my belief in the inexhaustible resources of my physical body.
All this is a very intellectualized way of leading into how sex was, but wasn’t, the “same” post-surgery. It’s not as though sex and/or sexuality had ever been a simple and uncomplicated matter for me. (Here I must acknowledge that anyone who knows me well in real life would laugh uncontrollably at this sentence—and maybe someday I’ll share the inside joke with you.) But having to confront a matter again that I had believed to be long ago resolved – that my body was good and reliable and worth enjoying – has been more than a little complicated, shall we say. It’s a blessing that my husband is as generous as he is. He agrees with me that we are both still a work in progress, singly and together.
For me, my husband, and the rest of my family and close friends, the focus of this stage was still primarily on improving my chances of survival. The immediate urgency of the time surrounding the surgery was replaced by the sense that we were in a marathon, not a sprint, and that all our coping strategies would have to be adjusted accordingly. Contemplating the loss of several major organs was still only important insofar as it helped me feel more integrated and whole, paradoxically enough. I was and had always been far more than a baby machine, after all, and my new reality was worth embracing.
3. Accommodations and Adjustments—the New Normal
One of my major therapies for the past five months has been to take a daily dose of Megestrol, an artificial progesterone, which helps suppress any estrogen still circulating in my body. It’s a strategy that appears to be helpful for estrogen-dependent tumors like mine. Unfortunately, even without my ovaries I still appear to have enough belly fat generating estrogen to have a stimulating effect on the tumor cells, wherever they may be. Fortunately, at least so far, this scheme is working: my last CT scan showed dramatic improvement (that is, a significant decrease in the number of likely cancerous nodules between September, when I started the hormonal treatment, and December, the next test). But this effort to dry up any remaining estrogen also has other not-so-welcome effects. My skin, all of it, is drier and less supple; my energy level is reduced; I have nightly sweats; my joints have lost flexibility; my muscle mass and strength are diminished. In short, I’m suddenly several years further into menopause than I was a year ago.
Do I miss having my uterus and all the rest? In a perfect world, I’d prefer to have it in its earlier healthy and innocuous condition. But as it was, no, not at all. Do I feel less of a woman without those particular body parts? No. That notion might have carried some weight a while ago, under different circumstances, but it’s not germane now. Do I regret not having known some things earlier—such as the therapeutic implications of surgery? Probably, yes. I don’t think I would have chosen not to have surgery at all, though I do know a woman with uterine tumors who has (so far) preferred an alternative course of treatment. But I would give a lot to have had the chance for a live tissue biopsy, or simply to have known when I had it that the surgery itself often triggers metastasis.
Most of this is moot, since what’s done is done. Yet I have no doubt that I’ll continue to struggle with making peace with the limits of my ability to know what is truly going on with my body. Not so much to predict the future but to have a better sense of self-awareness. Going into the December CT scan, I felt truly so well, much more healthy and integrated than I had in September, I was mostly concerned about what I would do in case of a gross discrepancy between how I felt and what the test showed. Somehow, I very much want to believe that my personal “cancer-o-meter” will let me know when things are going well, or going badly. That illusion of control is hard to relinquish! And now that my next scan is only a month away, I’m sure my desires in that area will increase again.
I was in such a panic at the time of the surgery that creating a ritual to say good-bye to the body parts I was about to lose forever did not even cross my mind. Oh, I did make sure to give my cervix one last feel; if I’d had a speculum handy, I would have taken a look, too. (Yes, I was a young woman during the era when self-performed pelvic exams were popular.) But now seems like a good time to create something along those lines for myself. Something different and perhaps more tangible—though not more meaningful—than writing about it at such length here, to share with you.
I'd like to close with a disclaimer of sorts. Of course, I am writing here specifically about my own particular experience. I have no way to know how different it would be for me had the body parts I lost been more obvious, visible, or at least external. I don't have any interest in comparisons, only in describing how it has been for me to undergo the changes that have been visited upon me. Nor do I make any claim about the universality of the three stages I describe. Although they make some internal sense to me, they're also a rhetorical device as much as anything. I hope merely that by sharing my own experience in such detail that I thereby can stimulate some reflection among you, whether you choose to share your reactions here and now or not at all.