Panic

It’s a known condition of human nature that we appreciate what we have only when we’re faced with losing it. I’ve spent so much time bemoaning the lack of well-being that characterized my life BC (before cancer) that I failed to notice a gradual process whereby a facsimile of that well-being was developing in its place.

And then, that was shattered.

I’d become aware that my bra was pressing against my flesh, especially on the left side, but put it down to having put on weight. During the week, however, I realized that my breast was swollen. I remembered it had swelled during radiation but I’d had a vague notion that it had settled down to its normal dimensions some time over the last two months, since completing therapy. But now, my breast obtruded whenever my left arm brushed against my side, a situation that was not reflected on my right side. By the time I became agitated enough to call Hannah, my old companion, the churning stomach, was back.

Hannah told me to contact the surgeon. She said that the swelling could be due to the radiation, but it scared me that she could entertain any other possibility. (It’s unclear to me why she suggested I contact the surgeon instead of Dr. Sarid, my oncologist. She said that she didn’t know Sarid’s schedule for Wednesday, when he would be at the hospital, but I still wonder why she couldn’t have made an emergency appointment for me.)

Genuinely alarmed now, I tried to contact Dr. Sigal Librant and left a message on her voicemail. Next I made an emergency appointment to see her on Thursday afternoon (made possible by Nachum running to the doctor to obtain an emergency referral).

By the afternoon, I had calmed down. I’d surfed the net and spoken to Sally, my granddaughters’ former nanny, whose young daughter is a cancer survivor. It seemed that even months after radiation therapy, the breast can remain swollen. My problem was that I couldn’t remember if it had ever returned to its original smaller proportions.

I remained relatively calm until Wednesday evening when I noticed small black spots on the aureole around my nipple. Thursday morning, I ran a search for inflammatory breast cancer or IBC and what I read sent me into an unprecedented realm of panic (http://www.mayoclinic.com/health/inflammatory-breast-cancer/DS00632). My symptoms met some of those of IBC, although they could just as well be related to the effects of radiation. IBC is rated as Stage 3B or Stage 4 if it has metastasized, and survival rates are low. I believed with my whole being that the fight was over and that I was now facing death.

We reached the clinic early and when Sigal arrived, she told me that she’d heard my voicemail message only that afternoon. She examined me, told me the swelling was indeed due to the radiation but that I had one of the best recoveries she’d seen, that the black spots were pigmentation, also from the radiation, and that I certainly was not suffering from IBC.

I wondered, and still wonder, why I wasn’t immediately lifted out of my sense of doom by a feeling of relief. I think it’s because I’d given up. I had cried with uncontrolled hysteria, I’d screamed with fright at the horror of imminent death, I'd rued the time I hadn’t spent feeling grateful for my life as a cancer survivor. Mentally, I had gone to the brink of the abyss and it took a while to step away from it. How fragile my ability to cope with it all is and how wonderful life is when I can.

The next day I drank in the beauty of the world, and was back to complaining to Nachum, dispenser of indispensable TLC during that horrible period, about his driving.

How Am I Physically?

I'm tired. I don't know if I'm tired because radiation destroyed some of my cells and my body has to work overtime to recreate them, or I'm tired because we're in a transitional season and I'm working long hours. Everything becomes cancer-centric even when a connection to it is farfetched.

I sometimes forget that I still have limited use of my left arm. This is the arm from whose armpit 15 lymph nodes were extracted and although I'm getting some sensation back - for example, I can feel myself applying deoderant - an area of my upper arm is still numb. Sometimes, such as when I stab my electronic card at the parking entrance at work, I overreach and then my arm hurts. I've been told not to lift anything heavy in this arm, including weights. For the rest of my life, blood tests, injections and anything involving the active use of an arm and its contents must be done from my right arm. I wonder how much more time will pass before I get full feeling back.

I've put on weight. Initially, I put on weight because I tend to overeat but I should've been smart and lost a few kilos before beginning the Tomoxifen. Now my jeans pinch around the waist and the thighs. I don't know if there's any point in even trying to diet.

I have hot flushes. When I stopped taking HRT, I began to get a few hot flushes a day. They didn't last more than a minute or two and were more or less bearable, even those that left a faint line of sweat on my upper lip. It was, after all, summer and there were times when I didn't know if I was having a flush or it was just damned hot. A hot flush, for those who have never had one, begins in the depths of the body and spreads itself all over while concomitantly increasing in intensity. It has been referred to as 'cooking from the inside'. I think their frequency has increased since I began to take Tomoxifen - a spot check over the last four hours shows I was getting one every hour on the hour for the first three and the fourth one a mere 50 minutes later. If it gets worse than this I'll be dressing for summer in the depths of winter.

Musings

I have been a hypochondriac since childhood. Whatever ghastly illness of the week I was suffering from, the inevitable panic was sometimes allayed by a visit to a doctor, where more often than not I felt like an idiot, or it just dissipated with time as I found that I had no real symptoms and I was still alive. As I matured, I found that although I was still apt to take on board the most rare and deadly disease possible, I was far more sanguine about my state of health. In fact, I suspect there was an element of 'it can't happen to me', because until then, it hadn't.

Now I find that, in common with almost every cancer patient I know, anything that is even slightly awry is cause for panic. A little over a month ago I watched with horror the appearance and daily growth of a mole-like object on my leg. It started as a small, white bump that morphed from a pale pink to a darkish brown. I was convinced that my body was breaking out in melanomas but people who should know what a melanoma looks like put my mind at rest. The mole or whatever it was, darkened, hardened and has since disappeared. But this is the way it is - an unexpected twinge where there had never been a twinge before, a bout of gas, fatigue, a pimple, all become the focus of a fear that my cancer is manifesting itself in a new and dangerous way.

Liron (my erstwhile psychologist) had asked me to assign a number to my anxiety level on a scale of one to 10, (10 high) and I'd said four, which is probably why he decided I wasn't really in need of his ministrations. However, those moments when I feel something amiss, my anxiety levels are off the chart.

I watched carefully for side effects from the Tomoxifen and sure enough, just under a week after beginning with half a pill, I suddenly had a vaginal discharge. As the leaflet accompanying the medication clearly states that in the event of a discharge, stop taking the medicine immediately and call a doctor, I went into panic overload. I don't know Sarid's number so I called Hannah, who didn't seem very concerned - she just told me to go to the gynecologist. There was no recurrence and, a few days later when I kept my appointment, the gynecologist's examination calmed me down completely. It was nice going back to the old days when a visit to a doctor ended with a clean bill of health. I'm resolved to steer clear of unfamiliar toilets. A few days later, the day after I began taking the pill whole, I woke up with pain from mid-buttock all the way down my leg. Again, the leaflet sent me into a cold panic because it seemed I was having a bad reaction in my pelvic region. However, an hour or so later, the pain was gone and it hasn't yet returned. Either my body was having an initial response to the medicine - or we simply need to buy a better mattress.

Art of Living

I'd been looking forward to this course, which was conducted within the framework of research, and was open to anyone who had contracted breast cancer within the last five years. Art of Living appears to be an international organization - launched by one Sri Sri Ravi Shenkar - with the usual claims of reducing stress, increasing awareness, and promoting better health, energy, personal and global peace. A number of courses on its effect on cancer patients was concurrently underway in Jerusalem and Tel Aviv. (See http://www.artofliving.org/)

The course I attended consisted of 16 women, the trainer, Dafna, and two additional women whose presence was not totally clear - I think they were there to help us perform the exercises or tend to someone in case of distress. The women were of all ages, some shockingly young, from different walks of life. Our common denominator was that we had all suffered breast cancer, ranging from the minimally treated for early stage cancer (one woman's lump had been only 0.5 cm., less than half the size of mine) to those who'd gone through the hell of chemotherapy. One young woman revealed she'd had a recurrence.

Following the initial meeting, I was struck by the impact of that seemingly innocuous statement - we'd all had breast cancer. My diagnosis and ensuing treatment had been so very dramatic and I have been totally focused on my feelings, my treatment, my health care practitioners. As I have moved through the process to recovery, I have immersed myself in learning about the disease and its remedies, exchanging stories with women who shared the process with me, and riding the emotional roller coaster of trauma, fear, panic, despair and acceptance. It had been, it still is, a very personal, intense and all-encompassing experience.

The 16 women assembled in the room with the Indian ambiance and yoga mats, could have been anyone you see in street, the mall, driving to work - and yet, each and every one of us has lived through the same drama. It's almost surreal to contemplate that we all experienced the same gamut of emotions; the anxiety punctuated with intermittent hope waiting for results, the horror, fear, panic, despair and tears on receiving the devastating diagnosis, the bewilderment of submitting our bodies to the various machines, the resilience needed to confront the fear.

The course was exhausting. We filled out forms, learned to breathe in different rhythms (we learned to recognise each rhythm by its Sanskrit name), we looked into each other's eyes, we informed each other when we arrived on the planet and how long we intend to stay here, sang a song to an alien god, shared our feelings, and thankfully lay down on the mats to sleep as soon as we could complete the requisite breathing exercise. We drank a lot of water. Strangely, the subject of cancer was almost a stranger in the room, rarely becoming a topic of our interchanges.

We did this every evening from 7.00 to 10.00 from Sunday until Thursday - I got home every night after 11.00 - and again on Friday morning and the following Sunday evening. Despite two major sources of tension in my life at this time, I felt quite relaxed during the whole period I was attending the course but I'm not sure how much was due to the exercises or to tiredness from the sheer relentlessness of the schedule. I have failed to keep promises I made to myself to continue the breathing exercises at home or at work, but there is an open invitation to attend a session every Saturday and, for the next five weeks at least, on Friday morning.

I asked Dafna what happens physiologically when we breathe in different rhythms. Surely there is a purpose in taking long, drawn breaths as compared to short, panty ones. She insists it cleans the system, but cannot say how or why. Whenever I ask questions such as these, a common response is Why do I want to know. Seems to me a more relevant question would be, why would I not want to know.

Hiatus

The period between the cessation of treatment and my appointment with the oncologist was, despite predictions to the contrary, almost tranquil. With no treatments to undergo and no medication to remind me of what I'd had, I was almost able to enjoy the illusion that life was returning to normal.

I returned to work on October 16, after Rosh HaShana. I approached the day with a sense of heaviness, resenting the need to fling myself back into the pressure of a profession that I'm becoming increasingly less enthusiastic about. Although I work in a small company, most of my colleagues don't seem to know about my cancer and just assumed I'd been off on a carefree vacation for three weeks. By Monday, I was feeling better about being back, the workload not being particularly onerous. My boss, who had shown patience and understanding while I was undergoing treatment, seemed to expect me pick up where I'd left off pre-cancer as if I'd suffered nothing more than a particularly nasty bout of flu that had now passed. The CEO, who'd regaled with me with horror stories of the cancer experiences of a close friend of his, told me that he'd almost called to convince me not to take time off during the radiation treatments, for my sake, he averred, not the company's. I told him that the emotional as well as the physical effort of traveling daily to the hospital had taken its toll and I had been correct in taking the time off. All in all, my employers have been supportive and considerate.

I'd contacted the 1 in 9 organization a few weeks earlier and the very sympathetic and knowledgeable volunteer I'd spoken to had told me that many women have an emotional crisis during the month-long period between the end of treatment and their next visit to the doctor. I remember the period between learning I wouldn't have to undergo chemotherapy and beginning my radiation treatments as being emotionally difficult because for the first time since receiving the devastating news of my cancer, I was faced with downtime - no test results to wait for, no appointments to keep, just timeout for contemplation. The lack of action forced me to confront my mortality and go to the next stage emotionally, Now, during this longer, one-month hiatus, I found, unlike that earlier time, I began the day with a smile, which I more or less maintained until flaking out in front of the TV at around 9.00 in the evening, waking up around 11.00 in time to go to bed.

Medication Begins

I've allowed a whole month to go by without updating this blog, not because nothing happened in October, but because I didn't have the time or the mental energy to sit down and write it.

At 10.10 am on 10 / 10, I had my third appointment with Dr. Sarid, my oncologist and, as expected, he prescribed Tomoxifen.

Tomixifen is the medication of choice for hormonal-receptor positive cancer treatment. It received FDA approval in 1978 and its role is to block estrogen from binding to its receptors in the breast. There are some unpleasant and even life-threatening side-effects and I was curious to know why I wasn't being given Arimidex, which the informative lady at the 1 in 9 organization had told me is generally prescribed for post-menopausal women, such as myself. Arimidex is an aromatase inhibitor that prevents the conversion of steroids produced by the adrenal gland into estrogen and it has its own set of unpleasant but not necessarily life-threatening side-effects; however, it is thought to be superior to Tomoxifen in terms of preventing recurrence.

Dr. Sarid explained that Arimidex is very expensive and is not included in the basket of services in the first two and a half years of recovery from cancer. If I survive the first two and half years, I can expect to then be prescribed Arimidex, always presuming that it won't have been dropped entirely by then. Regardless of the cost, I wanted to know which medication was more likely to keep me alive. He said that in some cases, when the cancer was more advanced than mine, he recommends that the patient undertake the burden of paying for Arimidex. He seemed so convinced that I am going to survive that he was almost dismissive in asserting that Tomixifen is good enough for me. He wasn't receptive to the idea that I seek a second opinion, which the 1 in 9 lady had recommended. I managed to ask a few more questions before deferring to the feeling that I was taking up time he should be spending on other patients. I am now on a schedule of 3-monthly checkups. Perhaps at my appointment in January, I'll be able to ask another few questions. Prior to that, I'll need to have a blood test, a mammogram, ultra sound and check my bone mass.

Still feeling uneasy about the medication, I went to talk to Hannah, the nurse, and asked her if she thought I should get a second opinion and if so, what should I do if it differs from that of Dr. Sarid. She reminded me that Arimidex has been around for only about five years, compared to the decades that Tomoxifen has been in circulation, and that the long-term effects of Arimidex have still not been determined. Say no more - Tomixifen it is. She suggested I begin slowly, taking a quarter of a pill for two weeks, then half a pill for two weeks and working my way up to a full pill in a month in order to give my body time to adapt to it. In cases where there is a extremely unpleasant reaction to Tomoxifen, Kupat Holim (health fund) might be persuaded to switch funding to Arimidex.

In the end, I found that the pill itself is so small, chopping it into quarters is more trouble than it's worth. I began with half a pill which I took in the evening for two weeks. A few days ago, I began taking the pill whole.