Falling ill in the 1960s, my grandmother was never told by her doctors that she had pancreatic cancer. That seemed to be a fairly common tact when the outcome was bleak: there was no question the end was coming once you got a diagnosis, so why stress the patient even more?
And survivorship? What was that? Surviving was a long shot and anyone who did make it through was told to be happy that they were still alive. Lingering side effects were considered a small price to pay. But with the advent of more effective treatments, the population of survivors has grown significantly. These days, there is a future for cancer patients, and with that a growing need to address the distresses that may plague former patients for many years to come.
There are the physical repercussions that we often hear about, such as neuropathy, lymphedema and heart troubles. But more attention needs to be paid to what goes on in the space between patients’ ears. The psychological effects of cancer diagnosis and treatment can be just as, if not more, debilitating and long-lasting.
It’s the pain no one else sees that hurts the most.
I am fortunate to live in an area of the United States with exceptional medical care and several highly reputable cancer centers. However, I’m even luckier that the particular hospital system my family is part of has gone to great lengths to make sure that they treat the whole patient, offering outstanding psychological support at the cancer center. Not only are there support groups and a variety of classes, but there are exceptional clinical counselors available to deal specifically with mental health issues associated with cancer. Based on what I’ve been told by patients at other facilities, such an enhanced level of emotional support is a rarity.
This is disappointing. We have finally chipped away at the stigma surrounding cancer and have improved the survival rate, but we have much more to do to support patients and survivors in treating the emotional effects of the disease.
This was the situation: I finished chemo, finished radiation. I had gotten to bang the “Whoopie! I’m done!” gong in the radiation oncology patient waiting area — very satisfying. I had my “exit interview” with the cancer staff. The worst was over.
Every cancer patient looks forward to the end of treatment and a clean bill of health. As a matter of fact, I’d been so focused on finishing that even when I could see the light at the end of the tunnel, I really couldn’t see past that point. Chemo was the monster that consumed me. I had dreamed about the end of treatment for weeks and weeks, trying to hold on mentally until that final infusion, and after that, the last radiation appointment. Finally, that day had come.
However, I still parked in the familiar “cancer patient” spots in the parking garage that allowed me quicker access to the hospital buildings, a necessity on busy days when I needed to get to my appointments promptly. My chemo port was still in because I would be receiving Herceptin (monoclonal antibody) infusions for about six more months, and even though Herceptin doesn’t have noticeable side effects, it had the potential to affect my heart.
So was I well? Was I sick? The tumor was gone, the treatment was over, my scans had come back clear, but the questions remained. My sense of self had experienced a powerful upheaval during treatment and I felt lost. As much as I hated it, I’d become comfortable with the idea of being a cancer patient. That was the known. The unknown was what came after that.
Okay, where to now?
The unknown is scary and the uncertainty doesn’t simply go away. When you’re a patient, your medical team works out a plan based on your specific situation, and that’s your roadmap for the length of your treatment. When you pass into survivorship, you travel off the edge of the map. The remission rate for breast cancer is remarkably good, but it’s not guaranteed.
At some point, I left the map. I have the rest of my life to get comfortable navigating through what comes next.
After posting about missing the “downtime” of chemotherapy, I need to talk about how much of a privilege it is to be here writing that. I get to reminisce about the positives of being allowed to have no other job but to rest and recover.
Sometimes I complain about chemo brain, sometimes I wonder why *I* got cancer when those who take worse care of themselves seem to get off scott-free. I’ve left the initial fears about death behind me. Yes, my cancer may come back, but right now I’m in a good place with a good prognosis. My reality is that I will be able to enjoy this holiday season and focus on being with family, feeling physically healthy and “normal” again.
I have friends who are currently going through treatment. And you can bet that they would give anything to not have to be there, in the same way that I would have when it was happening to me. Some of my friends may eventually get to the place that I am now; for others, this may be the last stage of their lives.
“All we have to decide is what to do with the time that is given us.” ~Gandalf, The Return of the King
This is not lost on me. In fact, it’s something that I think about a lot. As we approach Thanksgiving, I am very grateful that I’m doing well, not even a full year after completing my last treatment. In addition to my gratitude, however, I carry a lot of guilt. One in eight women will be diagnosed with breast cancer during their lifetime. And many will be diagnosed with other cancers or other life-threatening illnesses. At any given time, there are so many of us going through the shock, fear and psychological and physical suffering of various treatments. How can I complain about my lingering discomforts when I have the pleasure of being here and experiencing them?
There are many things that could have been worse for me. But they weren’t. The more time that passes, the less I worry about why I got cancer and wonder more why I am one of the fortunate ones. As difficult as it is to put my cancer experience behind me and move on as if nothing happened, it’s even harder to do so knowing that I am leaving behind others who will not make it.
I’ve met a lot of fellow cancer patients in the infusion room, some with metastatic cancer. There’s one in particular I cannot forget. I’ll call her “Noel” since I met her heading into the 2017 holiday season and her mother privately told me that she wasn’t expected to survive past Christmas. Noel was a friendly and sweet woman with aggressive breast cancer. We chatted about hair regrowth as mine was just barely beginning to come back, and she shared with me Facebook photos of what her hair looked like after her first breast cancer treatments were completed. Eighteen months later, the cancer had returned with a vengeance. Noel was divorced with two pre-adolescent daughters. Her mother told me that as Noel’s situation deteriorated, it also devastated her daughters, who were witnesses to their mother’s decline. Luckily, their father was very supportive and provided as much care and love as he could.
I was heartbroken as I left the infusion room that day. I don’t know ultimately what happened to Noel, although I expect the worst. Cancer is a horrible beast that ravages the patient, but also takes the family down with it. I think, “What a blessing to not have to go through that.” But that thought catches on my conscience. I’m still here; do I deserve to be?
Recounting this story a year later, that guilt weighs even heavier now. I feel an obligation to make good use of the time remaining.
This is going to sound very strange. In fact, it seems bizarre to me as I’m writing it. But there are parts of chemotherapy that I miss.
So this deserves some clarification: chemo was absolutely miserable and by far the worst part of cancer treatment. When I entered the infusion room, I knew that I’d be out of commission for the next week. I’d feel nauseated with a burning throughout my GI tract and be laid out as if I’d been hit by a locomotive. I could.not.wait for chemo to end.
What changed my opinion? You may think this sounds crazy, but hear me out. The sad fact was, chemo was the only guaranteed way that I could get some rest.
I knew I wasn’t going to handle work issues, clean the apartment, pick up the kids or do anything else that I’m usually expected to do. It was a forced convalescence. One that I desperately needed.
When I was going through cancer treatment, I didn’t worry about the little things. And truly, when you have cancer, everything else seems inconsequential. When you’re wondering whether you’ll live to see your kids graduate from high school, nothing matters as much as survival.
It wasn’t until I finished all my treatments and my hair had grown back that the “little things” started to creep back and set up residence again. Memories of the misery of chemo lose their clarity, the fear of death passes. The overwhelm from a diagnosis is replaced by the more familiar overwhelm of daily stressors, now made worse by the additional complication of chemo brain. No, they’re not life-threatening, but they are all-absorbing.
I’m gonna lie down and close my eyes for just a sec…
So is it surprising that I wish I could close my eyes and be left alone for a week? Even more so, isn’t it sad that it took cancer for me to be allowed to rest and let others take care of things for a while?
That, I believe, was a warning that my life needed to change and is now the major driving force in my meditation practice.
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Consider: Because my cancer treatment lasted over a year, it became the “familiar”. The “unknown” is what follows, and that includes the threat of recurrence. That’s when things really get scary. Learning to deal with that will literally take the rest of my life.
This was one of the nicest surprises that I received throughout all of treatment.
Growing up, I always associated surgery with umpteen stitches that required removal. Then again, I also associated cancer with certain death. Luckily, neither one is a definite anymore. Since I’d never needed major surgery before, I had no idea that surgical glue is a thing. And what a thing it is! It would have probably been different if I’d had a mastectomy, but with a simple lumpectomy to remove a not-so-big tumor…all the stitches were dissolvable and internal.
A view of my armpit after my surgery. The top scar is lymph node excision, the bottom is lumpectomy. The shiny stuff is glue. Yay, no bandages needed and no stitches to remove!
On the outside, there was glue. It was plastic-y, kind of like if someone had taken nail polish and drawn a stripe across the incision, only it was more pliable. As my incisions healed, the glue flaked off. There were no dressings to change, no bandages necessary at all. Not having external stitches was a beautiful gift from my surgeon.
If you’ve read my other posts, you’ll know that psychologically I didn’t handle the concept of cancer well. It took me on an anxiety-fueled roller-coaster ride, as I went from a healthy, active woman to a cancer patient. I have a stubborn expectation of normality in my life, and over the years I’ve put a lot of work into maintaining it. Cancer blew that to shreds. And in a funny way, that little strip of glue brought a bit of “normal” back to me.
Or more accurately “Breast Changes, Lack Thereof.”
This one threw me for a loop. Prior to my lumpectomy, I scoured the internet for ideas of what partial breast removal looked like. In a word, disfigurement. Certainly, having half a breast was preferable to having no breast or dying from breast cancer, but I wondered how I would deal with losing a secondary sex characteristic that society uses as an indication of female-ness. My breasts had nursed two bouncing babies into toddlerhood and cancer was going to take one of them (breasts, not babies!). That kept me up at night.
Top scar: sentinel lymph node dissection; bottom scar: lumpectomy. Teeny!
After dying a thousand deaths, I found that my reality was not nearly as frightening. My lump was small and sitting at about 2 o’clock on my left breast. That put it dangerously close to my axillary (armpit) lymph nodes, which could enable the cancer to spread faster, but also in a place where tissue removal would be less noticeable. Three sentinel lymph nodes were removed from my armpit — they were found to be unaffected. My surgeon was able to get “clear margins” (no cancer cells were seen on the edge of the tissue that was removed) on the cancerous lump, and if not for the scars, there was little indication that I’d had surgery.
View of my lumpectomy scar, arm down.
That blew my mind. With small breasts, I didn’t think I could spare the tissue. I was contemplating a prosthesis, and concerned that the size of the excision might tempt me to go with reconstructive surgery…but none of that was necessary. Even my surgeon was surprised. I told her it was because she was an excellent surgeon, but she wouldn’t accept the compliment. According to her, I was just very lucky.
After radiation treatment, that breast tightened up and even gained a bit of size. All at no extra cost.
So, whenever I do a gratitude meditation and count my blessings, I reflect upon this. There are so many things that could have been worse, and I had gotten lost in the terror of it all. But in the end, it was okay.
Note: I wanted to show how similar both breasts looked, but then there’s all this potential for getting flagged as inappropriate, so you’ll need to be content with “side boob” photos and just take my word for it.
I’ve written a lot about my chemo experiences for breast cancer, but I also underwent radiation treatment. Compared to chemo, it was a breeze, however, it came with its own surprises. I was preparing myself for potential discomfort and burns, but was caught off-guard when I realized I would get four permanent marks on my body to help align the lasers and make sure that radiation was being delivered where it was needed.
Permanent marks = tattoos. Now, I have nothing against tattoos on other people, though I admit to occasionally thinking, “You realize you’re stuck with that, don’t you?” about a particularly colorful specimen. Sorry, it’s the era I grew up in. I’ve seen absolutely gorgeous tattoos; I just never wanted any myself.
Venus de Milo illustrating where three of my four tattoos are (the 4th is hidden by the stub of her arm, but mirrors the visible one on the other side). Not actual size, obviously.
I remember being told about the tattoos and instinctively wanting to protest. It wasn’t about the dots themselves — I keep my dermatologist in business with all the moles that pepper my body. I think it was about not having a say regarding something that was going to be done to me. For me, cancer was about feeling out of control. Being forced to get tattoos was frustrating and completely unexpected. It felt like bait-and-switch, where the focus was on preventing burns and what to do about tender skin, but then ohbytheway, you’re getting tattooed too. It was one more thing to endure.
I know I was blowing this out of proportion. These are just small dots. There are four of them, one on the ribcage below each armpit and two running down the center of my chest. They’re blue, which was a necessity, given my highly mole-y skin. And they’re definitely permanent. I wrestled with the concept but eventually sighed and just accepted it.
One of my tattoos, closest to the belly, several inches below the sternum (see Venus). Glasses for reference. Yes, It’s teeny.
Maybe it was the friendships that I developed with the radiation team, maybe it was finishing all my cancer treatments, but my prejudiced view of those tattoos softened over time. Now they meant something to me. Previously, I couldn’t imagine any reason that I would submit to being marked like that. But then I started wishing that the tech had drawn teeny stars or hearts instead of plain dots. And I heard of breast cancer survivors covering mastectomy and implant scars with inked art, or foregoing the reconstruction altogether and allowing their chests to serve as a canvas, making something beautiful out of an emotionally painful situation.
When you’re told that you have cancer and will need the full complement of treatments, you focus on the concepts of surgery, chemotherapy and radiation. Chemo, for example, can be frightening to think about because of purported its side effects, so you gloss over the details. But when you get down to a practical level and start learning about exactly how the infusions will take place…
I knew I needed chemo. I assumed that it would be administered intravenously, as in, into an arm vein with the bag o’ drugs hanging from the IV pole. Ahhh, but the drugs are caustic and would cause damage to a smaller vein, so to avoid that, they go directly into a major blood vessel to allow for quicker mixing with blood, faster circulation through your body and much less discomfort. This is done through a port.
Let me be clear: a chemo port is a revolutionary device that has made administration of chemo drugs far easier on the patient. Not having the port would be absolutely miserable and likely necessitate breaks in treatment as the patient recovered.
This little marvel makes chemo much easier. The dark purple circle is a soft membrane into which the needle is inserted (through the skin). The tube delivers the meds straight into a major vessel. Easy peasy!
However, it wasn’t until we were talking about setting up a port implantation appointment that I began to grasp what was actually going to happen: a small disk would be implanted onto my chest wall, just under the skin, from which a thin flexible tube would run up and over my clavicle and then down into the blood vessel (probably the superior vena cava, but I didn’t ask). Once I started infusions, the needle from the bag containing the drugs would be inserted through my skin, through a membrane on the port, and that was it for the needle prick. Simple and relatively painless.
But about that port. To me, “port placement”, as the implantation procedure was called, was surgery. And I wasn’t great at handling surgery. Usually I like a lot of info to prep me for what’s coming, but I couldn’t even handle watching a video of a placement procedure.
After port placement. I was acutely aware of a foreign body poking out of me. Alien, anyone?
I don’t have a lot of fat on my chest. There was nothing to nestle the port down into, and as a result, after implantation my skin was stretched tight. I could see the lump in my chest and I could see the tube as it ran up from the lump, over the clavicle. Turning my head pulled the skin — ow! I avoided looking at it, let alone touching it. All I could think was that I had an entire year of this.
Eventually the skin stretched to accommodate the port, but because it stuck out like a little knob, I worried about twacking it. When I hit it with a dumbbell during a workout, I cried. Seatbelts were a constant concern; I was afraid that the port would get dislodged and injure me in a car accident. Hugs hurt and I instinctively turned that side away from people. And of course, in the event of a huge catastrophe that resulted in the collapse of society and all modern services including port removal procedures, I might be stuck with that thing on my chest for the rest of my pathetic little life.
Eventually, the day came when I finished my last infusion and my oncologist gave the go-ahead for port removal. That thing was out within a week. Removal was simpler than implantation, done under local anesthesia without the need for fasting, and even all the tugging to get it loose didn’t bother me. I was so happy to have it out.
But I’d carried it inside me longer than I had carried either of my children, so I asked to take the port home. While I had hated it inside me, I was so grateful for what it had done. I mean, I couldn’t just let them throw it out! It was handed to me in a bright pink box designed for dentures (apparently, keeping your port isn’t popular enough for the creation of “used port” containers) and now sits on my desk. I prefer it there rather than in my chest.
One of the most distressing parts of going through cancer treatment was that I thought it would “ruin everything”, even if it saved my life. Physically, I was really enjoying my 50s and hadn’t noticed much of a drop in endurance and strength, and certainly wasn’t experiencing menopausal symptoms. But with my diagnosis came the news that, because I had an estrogen receptor positive tumor, I’d need to be taking estrogen-blocking Tamoxifen (or an aromatase inhibitor) for a decade.
A decade is a long time! Chemo was only six courses over about four months and radiation lasted only six weeks — all time-limited and psychologically doable. But Tamoxifen would be with me for ten years, and presumably, so would the troublesome side effects, according to just about every woman who was taking it. They spoke about how difficult it was to stick to the daily regimen, knowing that it was responsible for horrible hot flashes and night sweats — one woman even said that she couldn’t exercise due to the severity of her symptoms.
Not exercise?!?! My version of hell: a sedentary existence.
At this point, I was busy dying a thousand deaths. I started to question whether death by cancer was a preferable alternative to a decade of misery. Mind you, I hadn’t even begun taking Tamoxifen yet; all of this was fear-driven. I feared having no control over my own existence and the things that really mattered to me. Basically, this was an end to life as I knew it.
So, fast forward to today. I have been on Tamoxifen for a year. I’m still waiting for the misery. Please note, I do not, for a second, doubt that women struggle with Tamoxifen’s side effects and I have the utmost sympathy for them. I also realize that I’ve been very fortunate so far to not have those types of symptoms. Sometimes I feel a little warm and have to roll up my sleeves or take off a sweater. Being in stuffy rooms can feel uncomfortable. But these don’t constitute what has been described to me as a hot flash, and I cannot recall whether I had those same sensations prior to treatment. Before my diagnosis, I’d had some sweaty nights from stress; I haven’t had a single night like that since starting Tamoxifen.
I do have some memory issues, particularly distractibility and loss of focus. Sticking to one thing at a time is an absolute necessity or else I’ll get sidetracked. My libido took a hit too. But is that Tamoxifen, effects of chemo…or just the onset of menopause?
The bottom line is, I had beaten myself up over potential effects of a medication way before I’d experienced it. I’d ignored the number one rule of cancer: everyone’s experience is different. Oddly enough, that had been the mantra I repeated to everyone else, but I’m the one who needed the reminder. For me, Tamoxifen has not turned out to be the torture that I’d expected.
If there’s a take-home message from this, it’s that cancer is a complex disease and its treatment is equally complex. Just as there is personalized medicine, there are individual reactions to that medicine. I, for one, have convinced myself that I need to stay off the Internet, take a deep breath and have my own experience.
My teenage daughter had her eyebrows threaded for the first time (her decision). The threading salon came highly recommended and it was bright and inviting with a peaceful vibe. On the wall by the entrance was a sign next to photos of the owner’s lovely children: “I am not lucky, I am blessed.”
Ok, you probably see where I’m going with this and it has nothing to do with eyebrows. As I waited for my daughter I read the sign over and over again and felt a rush of warm fuzzies. I feel the same way, not simply lucky, but blessed. And in that comfy little shop, I thought about where I was a year and a half ago, scared and disoriented after my diagnosis, feeling like my world was crashing in on me. That seems so far away now.
Later, I was less frantic and lost, but saw a future only as far out as my hand, living treatment to treatment, riding a roller coaster as I went from one new medical experience to the next. But even in the midst of treatment, when I took a moment to stop and look around, I knew that I had so much to be grateful for. Not the least of this were the people who cared for me: brilliant doctors, nurses, therapists and administrative personnel. When I pause to consider my treatment experience, the warmth of these people is what leaves me with such a positive feeling. It was the community of care that made a huge difference: the attending nurses in the infusion room, the radiation therapists that I saw daily for weeks, the other cancer patients, most of whom I never met, but with whom I shared the work of putting together a jigsaw puzzle in the waiting room as we all came for treatments throughout the day. That sense of community, of never feeling alone and always being supported, that’s what makes me feel so blessed right now.
Yes, when I finished my infusions, when I finished radiation, I jokingly told these wonderful people that I hoped I’d never see them again (they get that a lot), but every time I think of them, I am overwhelmed with gratitude.
Frantic Shanti 