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: Bring On The Waterworks

While I’m exposing all my post-cancer psychological quirks, I might as well write about this one. Technically, this is not an “invisible effect”, but the emotions are, so I’m taking a little liberty with the title.

I cry. And I mean, like over almost nothing. I choke up over the smallest kind-of emotional thing and in situations where tears are not merited.

While tears are often considered another aspect of the anxiety/depression complex, in this case, my propensity to cry seems to exist in isolation from definite psychological states, which is why it deserves its own post. My emotional highs and lows cross the tear threshold more easily. And it really doesn’t have to be something terribly sad or unbelievably touching…it just has to be a standard deviation or two beyond neutral.

I am much more sensitive than I’ve ever been. Yes, it’s been a rough couple of years since my original diagnosis in early 2017, but right now I feel as if I’m teetering on the edge of exhaustion and have no resistance to an outward demonstration of emotion. The end-of-year holidays are notorious for stirring up deep emotions and feelings of overwhelm, so I’m sure there’s an element of that chipping away at me too. But this didn’t start with Christmas preparations.

Oh look! A puppy playing with toilet paper. *starts bawling*

Who knows what sort of residual effect the chemotherapy has on me? Combine that with any weird hormonal fallout from the Tamoxifen, which is blocking estradiol receptors in my body, and throw in some menopause, which I’m heading towards both pharmaceutically and naturally. I guess tears are to be expected?

I try my hardest to remain mindful of what I’m experiencing and not dissolve into a puddle in public places, but this may be an indication that I’m not doing a great job of “making space” for my emotions. Everything is RIGHT THERE in my face. My buffer is very thin and that doesn’t give me much room for observing my feelings impassionately.

I’ve read that many people feel more emotional even months (years?) after completing cancer treatment. But…really? I am bowled over by how much MORE there is to cancer than the cancer! It seems like the back end of this disease is just as complex as the front.

And I’ve got a load of empty kleenex boxes to prove it.

Addendum to Anxiety

I am just coming off a bout of particularly intense anxiety, so this is a good time to write an addendum to my last post. This episode of anxiety was striking in its intensity, hit me much harder than I expected and took a lot more out of me. The trigger was something that happened to someone I love, so I had no control over it but felt all the emotional pain.

It’s now been almost a week. Intellectually I’m over it but its physical effects linger and threaten to pull me back in. This is a change from the past because I used to be able to shake these feelings more easily. Now anxiety casts a long shadow that remains after the worst has passed. I get flashes of the stressful event and I re-experience that despair.

As it did with my cancer diagnosis, my weight plummeted over the past week. The reason: my reaction to anxiety is in the gut and intestines. A cold, tight, miserable feeling — emotional pain made physical. As days go by and things seem to fall back into place, meditation grounds me and staying mindful keeps me focused on the “now” and not ruminating on what has happened. But while I can calm myself, the physical effects of the nausea hold on. 

That nausea, then, serves as a reminder of the event and re-triggers the anxiety. In times of distress I fear eating because the nausea is even worse with food in my stomach. But not eating weakens me and increases the sense of agony. This transitions into a depression of sorts. Quite simply, at this point I can’t win.

What causes even more anxiety is the link between stress and inflammation, and thereby inflammation and cancer. While I’ve been assured that it’s not the case, there’s a part of me that still implicates stress in the proliferation of my cancer. 

As my weight drops I am reminded of that same fear I felt after my diagnosis, that the drop in weight would worsen my outcome because I still had to go through chemo and its effects. So all that fear is concentrated and deep in meaning. One event triggers multiple memories.

This seems like an impossible situation. Anxiety brings worries of cancer, which cause more anxiety. I’m afraid of being afraid. Doesn’t that sound ridiculous?

The cycle runs its course as time passes. The intensity fades. Slowly I regain my emotional footing, but I’m still attached to the expectations I had before the event that triggered this anxiety. Those expectations will eventually transition into a new reality, but until I am truly able to practice non-attachment, I am destined to repeat this.

Invisible Effects: Anxiety

This is tough to write.

One of the reasons this blog is currently anonymous is that there are topics I want to cover without the fear of being judged. As many strides as have been made in dealing with mental health issues, there still remains a stigma associated with things going on in your headspace.

If there’s one thing that cancer did, for better or for worse, is force me to face the fact that I have a problem with anxiety. I’ve often wondered how different my cancer experience would have been, had I been able to go through all of this without the uncontrollable fear. I expect that I would have been less angry, less nauseated, less desperate. I’m sure that other people experience anxiety with their diagnosis too; mine devoured me.

Cool, calm, collected…and so not me.

This deserves a description: if asked to describe myself as a dog breed, I would like to say that I’m a Great Dane or a Mastiff (hopefully less drooly), watching the world coolly, not getting too excited about anything. But that’s not who I am. I’m a Chihuahua — but not a nasty, bitey, snarly guy with a Napoleon complex. I’m one of those pathetic little dogs that just sits there and trembles with a paw raised. I get anxious, and how. But in the past, the bouts of anxiety always passed rather quickly, perhaps in a matter of hours or, at worst, a day or two. My mind would work through it, and that would ease the tension. That’s why I’ve always been able to handle it.

But going through cancer blew that to pieces. When I experience anxiety now, it hits me like a freight train. The effects are immediate: a cold punch to my gut followed by nausea and weakness. When I focus on being mindful and present, I can slow my breathing and heartrate but I cannot get rid of the nausea, so I can’t shed the overall feeling.

This sensation is horrible. Meditation works wonders, but I cannot yet make enough space for my anxiety to be able to step back and observe it. It’s in my face, and that’s terrifying, but not necessarily apparent to those around me. It’s a dirty little secret that has affected my quality of life.

That can be harder to deal with than cancer. And I can’t believe that I let myself write that. But apparently, I’m not the only one who feels that way. Dr. Stephen Ilardi, Associate Professor of Psychology at the University of Kansas with a private practice in Clinical Psychology, teaches a Calm Master Class called “Rethinking Depression” (Calm.com) in which he describes the experience of a former cancer patient who battled Hodgkin’s lymphoma. While undergoing particularly difficult cancer treatment, the patient was visibly ill and suffering but received an enormous amount of support from those around him, and that helped him through the disease.

Several years after he recovered from his cancer, the young man experienced a bout of serious clinical depression, but he didn’t “look sick” the way he had from the lymphoma. As a result few people around him understood the level of psychological pain he endured, and he received little support.

After his depression finally lifted, the patient declared that if he had to chose between once again going through the cancer or experiencing depression, he would take the cancer even though its treatment was pure physical torment. 

That speaks volumes regarding not only the agony of psychological distress but also how critically important it is to take it seriously. Mental health issues deserve more attention, and even though we’ve come a long way in understanding their impact, we need to do better. In the context of cancer, I feel it’s imperative to address the psychological repercussions of the disease, in addition to the life-threatening physical ones.

Which is why I’m writing. I can’t help but think how much worse this would be if I wasn’t actively engaged in coping techniques.

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.

Chemotherapy Dreamin’

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.

maarten-van-den-heuvel-5193-unsplash_cropped
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.

Peace In Puzzle Pieces

One unexpected thing that had a big influence on me in terms of feeling support from others was a jigsaw puzzle in the oncological radiology’s waiting room. It was a large puzzle with a lot of pieces. Every day for six weeks, as I received radiation treatment, I saw that puzzle in various stages of progress. Eventually, I started poking around at it, and often I would be able to add a piece or two. The next day I came, more would have been completed — seems like a lot of us were poking!

This served as a lovely metaphor for what we, as patients, were going through: cancer is a puzzle, and treatment offers pieces that we put together in hope of finding our way through. All of us were working on this jigsaw puzzle at different levels of ability. Some were stronger than others, some had better support networks, but everyone was shuffling along at their own pace, completing their treatment puzzle, piece by piece, day by day. On days when treatment seemed never-ending, there was gratification to be found in the progress of the jigsaw puzzle.

I had never realized that working on jigsaw puzzles was so soothing. Just as in mindfulness meditation where you focus on the breath, the puzzle offers an opportunity to focus on a particular pattern, color or shape of a piece. It requires concentration, but this concentration comes easily. You don’t have to make yourself focus, it simply happens as you search for a piece.

Eventually, my radiation treatment ended and I left a partially completed puzzle in that cozy waiting room for others to finish, but I longed for that familiar feeling of comfort and quiet. That waiting room had been an inviting sanctuary where my only responsibility was to practice self-care. I wanted that to continue. It wasn’t long before I’d found puzzles to work on at home. I chose the images for how they made me feel, and for quite a few months afterwards, working on puzzles was a meditation. My family played the role of other patients, and together we enjoyed the satisfaction of putting the pieces together.

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Here are several of the puzzles I/we finished at home. Apologies again: as with most other photos in this blog, I never intended to post these online, so the photo quality is lacking. I’ve added info on where these puzzles can be found in case anyone is interested, especially if you’d like to see what the pictures look like under ideal conditions.

“Secret Garden” by Alan Giana (Bits & Pieces, 500 pcs, Amazon.com): I was looking for a peaceful oasis and this image fit the bill. I loved the flowers and flying creatures, but particularly the koi, which brought a special zen to the picture. (Bad lighting – doesn’t do it justice!)

Summer_Puzzle

“Marvelous Garden” by Oleg Gavrilov (Bits & Pieces, 500 pcs, Amazon.com): I love peacock blue, the architecture smacked of Tuscanny and the flowers (yes, pink ones) completed the scene. This remains my favorite puzzle to date.

Peacock_Puzzle

“Autumn Oasis II” by Alan Giana (Bits & Pieces, 500 pcs, Amazon.com): Autumn means that Halloween/Thanksgiving/Christmas are coming up soon, and after such a miserable year of fear and cancer treatments, I was so looking forward to a joyous holiday season.

Autumn_Puzzle

“Florence” by Eric Dowdle (Dowdle Puzzles, 500 pcs, dowdlefolkart.com but purchased at Costco): I missed visiting Florence during a European trip due to scheduling conflicts, but it remains one of my most-wanted cities to tour. Seeing Michelangelo’s David in person is on my bucket list! I particularly liked that this puzzle came with a little poster of the image that made putting it together a serene pleasure. The last thing you want is to get headache trying to match up teeny windows!

Florence_Puzzle