Invisible Effects: Cancer Ain’t Cheap

In the midst of trying to avoid dying from cancer, and being fortunate enough to have health insurance, I wasn’t thinking about the cost of treatment. I couldn’t get past the thought of having cancer, the incoming test results and what my treatment options were.

But even with excellent insurance, there were a lot of expenses. Every doctor’s visit dinged us, as did every infusion. Surgeries (biopsy, lumpectomy, port placement) came with co-pays, some in the hundreds. A trip to the emergency room for an infected fingernail (thank you, chemo) was a few hundred.

Did I need this treatment? Yes! Do I regret spending this money? No! I received excellent care from my oncology team in addition to some amazing freebies that were offered by the cancer center, not the least of which was truly exceptional counseling. As someone with degrees in psychology, I feel that therapeutic psychological support during cancer treatment is an absolute necessity, and I was blessed to have an amazing Clinical Counselor. Additionally, the Nurse Navigator assigned to me had also been a breast cancer patient and was able to offer insight and support that I wouldn’t have been able to get from just anyone.

But once I got through the initial shock of my diagnosis, I had to start asking, “Is this covered by my insurance?” While some treatment was non-negotiable (surgery, chemo, radiation) there were things that I didn’t get (lymphedema compression sleeve) because a costs–benefits analysis suggested I could get by without them, and other things (genetic testing, 3-D mammogram) that I sprang for because they were well worth the peace of mind.

The financial impact of cancer may be one of the “downsides” of survivorship.

What saved us as a family was that there was an out-of-pocket maximum that limited how much financial damage we incurred. I consider myself unbelievably lucky because of that, particularly with two kids only a handful of years away from applying to college. Our savings did take a hit as the expenses piled up, but it was much, much smaller than it could have been.

I dodged that pricey bullet, but there are so many others who do not. The financial impact of cancer is not discussed enough. When I started researching the actual cost of all my treatment — not the fairytale insured version that I was so fortunate to pay — I was absolutely dumbfounded. The price tag topped $100k for my chemo alone! Going through treatment without insurance would have devastated us. Survivors go bankrupt over this.

Medical bills aside, there are costs to be incurred simply from lost work due to treatment and survivors may find themselves unable to work once treatment is over. Chemo brain has caused a great deal of stress for me as I face transitioning from part-time to full-time employment (a necessity due to the ridiculously high cost of living here). I am slowly learning to adjust to my lapses in concentration so that chemo brain does not pose a liability to the quality of my work. Mindfulness and meditation play a huge role in addressing these issues, as does moving towards a career that makes more use of my strengths and experiences, rather than simply looking for advancement in my current position.

I didn’t anticipate any of this when I found out I had cancer. I was so anxious about the diagnosis that the quality of my insurance didn’t even register. We thought we were ready to do “whatever it takes”. I mean, can you put a price on a life? And yet, can you plunge your family into debt with a clear conscience? These are painfully difficult questions with no good answers. It is unbelievably fortuitous that my husband had switched us to a more expensive insurance several years earlier, and heartbreaking to know that many others never had that option.

Invisible Effects: Helplessness

Suffice it to say, simply having cancer can leave you feeling helpless. Ignorance of the cause, uncertainty about the future, fear of treatment effects — that lack of control is frightening. But that’s not the helplessness that I’m writing about here.

In my last post on chemo brain, I alluded to the disorientation that comes from distractedness, brought on by lasting effects of chemotherapy on brain function. Here, I want to drill down and describe the feelings of helplessness that arise. 

In WHY Did I Just Do That?, I wrote about a humorous dream in which I couldn’t understand the reasons for my weird behaviors. But the more sobering side of this is that I often feel that same way during my waking hours. There are things that I’ve done — treating a red light like a stop sign, as mentioned in my previous post — that make absolutely no sense to me and make me feel like I’m not in control of my own behaviors.

To make matters worse, I am not aware that I’m doing anything wrong (or dangerous or illegal!) at the time. When I realize what I’ve done, I’m horrified. Want to feel helpless? Not being able to trust yourself is a pretty good way.

I’ve been told that the main issue is loss of focus. Mindfulness helps immensely in these types of situations, but as anyone who has practiced mindfulness can tell you, you can’t be mindful 100% of the time. In my case, I’m fearful that this distractedness can put others or myself at risk.

This.

Want a few more examples? Some are rather benign, like almost flooding the bathroom because I left the water running in the sink. Or writing an important email and leaving it unsent. Most of us have done something like that at one time or another, likely due to juggling too many tasks at once.

But the things that leave me feeling desperate are the ones that are not easily remedied. Having to learn things over and over again because I’m not retaining information. Having trouble expressing myself and not being able to retrieve words. After working as an editor at one point, this is unbelievably disheartening.

However, one event topped them all: I fell for a (well-designed, admittedly) bank scam where I gave out my Social Security Number despite having taken my work’s cybersecurity training course the previous week, and having received constant reminders from my bank that they will never ask for my SSN over the phone. Besides making me feel unimaginably STUPID, it cost me a good deal of money, time and nerves. 

“Helpless” is not even the best word to describe how I feel. “Hopeless” is a more apt term. “Exposed” and “vulnerable” work too. This begs the question: how much more damage will I do to myself before things start improving? I should be working full-time instead of part-time, given the cost of living in my area. But how can I even think of looking for another job when I’m on such shaky ground? Cancer knocked me down in ways that I never anticipated. Yes, I’m grateful for being alive, but YEESH!

Building new neuronal connections, identifying what aspects of my memory issues are most severe, practicing mindfulness as much as humanly possible — it will take all that, along with a healthy dose of patience, to start seeing improvement. Hope I don’t get distracted and drive off a cliff before then.

Treating the Whole Patient

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.

Cancer Patient vs. Cancer Survivor

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.

Survivor’s Guilt and “Noel”

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.

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“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.

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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.

Lifting My Spirits

I received an unexpected but incredibly satisfying compliment today. It was from a worker at Trader Joe’s who made a flattering comment about my arms. A little background here: I like to work out, and even obtained a personal trainer certification when I was a stay-at-home-mom. While I’ve never trained people as a profession, I have maintained my certification over the years — in addition to a vigorous training schedule. I’ve been told that this is unusual for “a woman of my age”.

When I received my cancer diagnosis, I was shocked largely because in my mind my lifestyle didn’t seem to fit the profile of someone at high risk. One of my greatest fears as far as cancer was concerned was that it would affect my ability to train regularly. While so many people engage in eye-rolling when it comes to exercise — it’s popular to equate exercise with misery — having to take time off from working out was one of the most horrible outcomes I could imagine. My version of hell involves a sedentary existence. I train hard to enjoy my life, to be able to move and lift and not feel pain. I work out to live and that energizes me like nothing else. And anything that jeopardizes that is a death sentence to me.

Okay, maybe a little dramatic? But you get my point. I.Love.Exercise.

Today’s compliment was particularly poignant. During my 2017 doctor’s appointment to check out that suspicious lump in my breast, the doctor’s assistant commented that she wished she had my arms. I remembered that as I went through diagnostic tests and oncology visits and surgery. I followed my surgeon’s orders regarding not lifting heavy things (well, mostly, because “heavy” is negotiable), but as soon as that time limit passed, I was off and running. Exercise meant normality, and I craved feeling normal, as in “not sickly and dying from cancer”. There was mention of this nasty impediment to my life called lymphedema. I didn’t really think about it much until I was discussing lifting weights with my oncologist, who said, “Exactly HOW MUCH weight are we talking about here?” and sent me to the lymphedema specialists so that I wouldn’t go full-Schwartzenegger without knowing whether I was risking having my arm blow up. (It hasn’t so far.)

But my point: the compliment I received today made me feel like I’d come full circle. While, yeah, fear of death from cancer is a biggie, drastic changes to one’s lifestyle are also anxiety-provoking.

Today, I felt, I’m back.

WHY Did I Just Do That?

I had an off-kilter dream last night. I was driving a co-worker somewhere and racking up points on my license. I leaned the car on one side — two wheels — to pass someone, then drove up on the curb to get around someone else. My co-worker looked nervous. When we were caught in a traffic jam, somebody pulled out a raggedy paper wand (think Harry Potter, but looking like a curly tree branch) to show my co-worker, complaining that it was the best he could do. My co-worker handed it to me, and for some inexplicable reason, I ate it. Then the fellow wanted it back and I didn’t want to admit what I’d done, but by that time the traffic had started moving again, so I sped away.

There were now several of us, and because we needed a place to work, I led our group to a friend’s house. It was a really nice place! Since it was the middle of the day, my friend was at work, so we simply went in (home invasion, anyone?). There, I repainted part of the room we were in as we ate pizza. I think I broke a few things too, but managed to glue them together. Finally my friend came home and gave me a hug as I apologized for not calling her before breaking into her house. She was totally cool with it.

All the while, as I was doing these crazy things, I kept asking myself, “WHY did I just do that?” But then I’d go on to the next crazy thing as if it were perfectly normal, followed by another “WTF???” from myself. I felt guilty and out of control, at least in between committing these various crimes.

You know those dreams you wake up from and think, “Whew! Only a dream!”? I wreaked enough havoc in this one to elicit that response. I’m writing about this because that’s how I feel sometimes. Like I’m stumbling around doing things that don’t make sense, only to catch myself after the fact and wonder what I was thinking. Granted, the things I’m doing are not likely to put me in jail or get me committed. But I seem to lose focus and get lost in a crack between the reality of the previous second and the reality of the next one. It’s as if I enter another dimension for a split-second before pulling myself out of it and going on.

This, they (the proverbial ‘they’) tell me, is normal. A weird cocktail of chemo brain, tamoxifen and getting pulled into menopause a bit before my time. I am trying to navigate this “normal” and don’t quite know what to do with it. Eventually it’s gotta pass, right?