“That Dragon, Cancer”: Catharsis in Video Game Form

I am always looking for ways to illustrate the complexity of emotions associated with having cancer, or caring for someone who does, as a means of relating it to people without this experience.

An immersive video game called That Dragon, Cancer does this by telling the story of a young child with the disease, in this case, a brain cancer called Atypical Teratoid Rhabdoid Tumor (AT/RT). The game explores the fear, hope, helplessness and fight that we go through when confronting so much uncertainty.

To be clear, this is not a video game in the usual sense, it’s a narrative with mini-game elements, sometimes lighthearted, sometimes dark. We follow the journey of a family as they navigate the rollercoaster of cancer diagnosis, doctor appointments and treatments. Those of us who have been on this path can relate to the tsunami of emotions and information, all rolled up into one overwhelming ball. The game does a good job of representing these feelings.

If you’re interested in experiencing this game with a blind playthrough, this is where you should stop reading. For more information on That Dragon, Cancer, visit the official website here.

WARNING/SPOILER: Because this is a true story, the developer Ryan Green (Numinous Games), along with his wife Amy, could not control the outcome; the game was created to honor the memory of their young son, Joel, by chronicling his battle with terminal childhood cancer.

Little Joel underwent a staggering number of treatments for his brain tumors.

Be aware that there are very distressing parts to this game. Just as cancer patients fight for meaning and claw for hope, so does this family. If you are not in the right frame of mind for this, or are at a painful part of your cancer journey, it might be best to skip this game. When the game originally came out in 2016, it left well-known YouTubers in tears. Everyone can relate to loss; Ryan and Amy made this even more powerful by documenting their son’s journey in recordings made during his treatments. Therefore, when you hear the distressed cries of a young child in misery, those are Joel’s actual cries, and they are heartbreaking. But hearing his delighted giggles helps ease the pain.

It is all very raw and real.

Even in the distress, we experience joy in the life Joel lived.

Losing hope, or clinging to it in the face of insumountable odds, is documented here. The Green family hopes for a big miracle, with Ryan and Amy each heading towards the outcome in different ways: Amy is adamant that Joel will be healed while Ryan is riddled with doubt. There is a very strong Christian influence in this game that reflects the Green’s religious beliefs, with many references to God, Jesus and saving grace through prayer, so those whose beliefs differ may find this element foreign and possibly irritating, and they should decide whether it is appropriate for them. Nonetheless, the game is beautifully done with moments that will make you smile in between tearful episodes and there is value in experiencing it.

Those who expect a movie-style, “deus ex machina” happy ending may be left empty and unsatisfied, but I found the end to be uplifting, inviting in the acceptance of inevitability.

The game also honors the memories of other cancer patients in imaginative ways.

I’ve now played That Dragon, Cancer three times through. The emotions that it evokes are very familiar and I found this game cathartic and validating. As the Green family discovers, if someone succumbs to cancer, it does not mean that their faith was not strong enough. If there’s one thing I’ve learned about this disease, it is that cancer is not picky, it doesn’t care about your desires and it doesn’t play by the rules.

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From the developer, Numinous Games: “An immersive narrative videogame that retells Joel Green’s 4-year fight against cancer through about two hours of poetic, imaginative gameplay that explores faith, hope and love.” $9.99 on Steam.

Endocrine Therapy: Getting to the Heart of the Matter

Looks like visiting a cardiologist after stopping aromatase inhibitors for breast cancer was a good idea after all.

The letrozole (aromatase inhibitor) that I’d been taking has been associated with cardiovascular effects, and since I was feeling progressively worse from the medication, I wanted to make sure that everything checked out okay.

With the improvement in surivorship comes an increase in the diseases that come about from cancer treatments. The longer people live, the more long-term effects take their toll.

It seems like the American Heart Association (AHA) agrees with my concerns. An April 26, 2021 statement by the AHA underscored the complicated picture of cancer treatments, in this case hormonal therapies for breast and prostate cancer. As stated in the article by Okwuosa et al. (2021) published in Circulation: Genomic and Precision Medicine, “As patients with hormone-dependent cancers continue to live longer, CVD [cardiovascular disease] has emerged as a leading cause of mortality and morbidity among survivors of these cancers.”

Ironically, breast and prostate cancers are some of the most common cancers in women and men, in addition to having some of the most effective treatments. The number is of breast and prostate cancer survivors is growing. Part of the success of treatment is expressly due to the development of hormonal therapies for long-term (5-10 year) use. At the same time, the increase in CVD problems is a result of this success, because as cancer survivors age they experience greater amounts of age-related cardiovascular events than do non-cancer surivors.

So, what do you do when the treatment that’s increasing your chances of beating cancer may also be increasing your chances of a cardiovascular event? Isn’t that one of the many problems with cancer? If your treatment works well, then that opens the door to having it work “too enthusiastically”, possibly with long-lasting negative effects.

It still comes down to healthy behaviors.

The AHA statement paper cited here stresses the importance of communicating with your oncological team about CVD risk factors and possibly requesting a referral to a cardiologist, having appropriate tests conducted (ECG/EKG, echocardiogram), and–in my opinion the most important thing the survivors themselves can do–modify lifestyle (diet, exercise, smoking cessation, etc.) to maximize your chances of a cardiovascular event-free survivorship.

While it may be frustrating to think of entering into an “out of the frying pan, into the fire” scenario with a potential leapfrog from cancer to CVD, nothing is written in stone. You can make an effort to protect yourself and avoid being a statistic. Focusing on healthy living will benefit you in many ways and is guaranteed to improve your life, no matter what your risks.

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Link to the AHA statement:
Okwuosa et al. (2021) Impact of Hormonal Therapies for Treatment of Hormone-Dependent Cancers (Breast and Prostate) on the Cardiovascular System: Effects and Modifications: A Scientific Statement From the American Heart Association. Circ Genom Precis Med,
DOI: 10.1161/HCG.0000000000000082

Link to a reader-friendly version:
People Taking Hormonal Therapy for Breast Cancer Have Higher Risk of Heart Disease, Monitoring Recommended, https://www.breastcancer.org/research-news/higher-risk-of-heart-disease-for-diagnosed-people-taking-hormonal-therapy

The Saga Continues…

I mentioned a few posts back that in addition to stopping letrozole (an aromatase inhibitor) which had originally been prescribed to me as long-term endocrine therapy for breast cancer, I saw a cardiologist. I was experiencing what felt like irregular heartbeats. Since arrhythmias have been associated with aromatase inhibitor use, I wanted to make sure that I wasn’t going from one problem to another.

The cardiologist I met with ran an EKG, listened to my heart and told me he really didn’t think I had any issues. However, he ordered an echocardiogram and a Holter monitor just to be on the safe side. I did both tests.

A week ago, I met with him to go over my results. He was pleasant as always, asked me how I was feeling–I was feeling great, actually, since I was pretty positive that I’d imagined any heart issues because I’d experienced little since I turned in the Holter monitor for analysis. So, if anything, I was a tad embarrassed for blowing things out of proportion. Geez, I’m such a hypochondriac!

That’s good, he said, equally pleasantly. “Because we found something.” Equally pleasantly.

Hang in there, baby!

I had not expected that. What I was expecting was, “everything looks normal.”

However, looks like there were some arrhythmias: supraventricular tachycardia and supraventricular ectopics.

My doc wasn’t concerned. He said that based on other data (72% left ventricular ejection fraction [LVEF]) my heart was healthy and strong.

Ooookay. But I was a little shaky that my concern about extra beats had been confirmed. Because I hate fearing that something’s wrong and finding out that I was right in fearing it! I’d prefer that it be all in my head.

Then we delved further into the echocardiogram. I shifted uncomfortably in my seat.

On the plus side, lots of things were normal. That’s good.

However, way back in early 2018, while I was receiving infusions of Herceptin, my then-cardiogram showed pericardial effusion (fluid where it shouldn’t be), but in a subsequent echo it had “fixed” itself. Well, that was back now. Also trace mitral and tricuspid regurgitation: my valves are a touch leaky. My cardiologist wasn’t too concerned about it. “Wear and tear,” he said.

But he also noted that I had a marginally “dilated proximal ascending aorta.” Right after which he noted that I was tall, suggesting that there could be error in the extremes. But neither one of us was 100% sure whether that was a change from the previous echo, based on how the report was written. And he questioned some of the values, saying that echocardiograms weren’t perfect or always accurate.

Get off one ride and right back on another.

At the same time, he wanted me to come back in a year for another echo. Just so that we can be sure that the dilation hadn’t progressed. “Then we worry,” he said.

I left the office with questions swirling inside my noggin and decided to do some computer research, which I immediately regretted.

First of all, “dilated proximal ascending aorta”, when googled, brings up a gazillion results about aneurysms.

ANEURYSMS.

I know I don’t have an aortic aneurysm. But I have to wait a year to see if the dilation progresses. That’s 365 nights of staring at the ceiling. And I have to make sure to remain calm and not harrass myself into elevated blood pressure, because that can put more stress on the blood vessel and dilate it even more.

Oh, and the supraventricular tachycardia and ectopics? Those are improved by exercise (um, yep, been doing that) AND by staying calm.

Try yoga and meditation, the websites suggest.

Okay, yep, been doing that too.

So where am I with all of this now? Obviously, I need to keep doing what I’ve been doing. But this really does underscore a couple of things:

1) Meditation and mindfulness are critical to our well-being. These are habits to establish now (yesterday!) and not stop. Ever.
2) Cancer casts a long shadow. You might be fortunate enough to earn the title of “cancer survivor”, but that doesn’t mean that it’s all giggles and rainbows afterwards. Cancer treatments are tough and while we’re furiously obsessed with doing whatever we can to minimize the chances of cancer returning (because that’s Job One), someone at some point needs to start thinking about what happens once the cancer is gone and we have to clean up after the long-term effects of the treatments.

Could my heart “issues” (I don’t know if they are serious issues yet) have been caused by Herceptin infusions, radiation to the chest and aromatase inhibitors? Yes, they could have. But could the fact that I am highly reactive and have a strong response to stressors played a role in this? Yes, of course.

Time is moving forward and I’m going to have to keep up.

And does it really matter? No, in all honesty it makes no difference. Whatever happened has passed. My only path through this is a calm heart and solid grounding on the Earth. I’ll know more about my physiological state in a year, which gives me another twelve months of daily meditation and exercise, and an even better appreciation of how my mind generates agony.

Maybe this is what I need to help me get better.

Just Show Up

The thing about cancer is that the news hits you hard at once.

And it’s not like you get time to get used to it, because the diagnosis is LOADED. All those scary things that you’ve ever associated with the “big C” rush at you and there’s no real way to protect yourself.

It would be terrifying for anyone, but those of us currently in mid-life grew up at a time when cancer treatment was not as refined or targeted as it is now: visions abound of hospital beds, bald heads, bodies wasting away, vomiting, hopelessness. Most cancers were frequently fatal and diagnosis was the beginning of the end.

Everyone’s pushing you to fight, fight, fight. It sounds like the right thing to say, but it can feel exhausting.

As we’re trying to process what this all means for us, for our future and for our families, others try to prop us up with cheers of, “Be a badass!” “Stay strong!” “You’ll beat this!” “You’re a fighter!”

So between juggling the cancer news and the “hang tough” messages from those around us, everything gets overwhelming. Our oncologist lays out a treatment plan and suddenly we need to learn a different language. Tumor types, chemo drugs, clinical terms, side effects.

I distinctly remember wanting to hide under my bed and wait for it to go away. There was so much I needed to do and I didn’t know how to get through it all. It seemed like an immense amount of work for one person.

And then it hit me. All I needed to do was show up.

I put the gloves away and realized I didn’t need to fight anything. I needed self-compassion.

I didn’t need to be the warrior that everyone was pushing me to be. The mere fact that I was going to my appointments on my scheduled day was enough. I wasn’t going to win a prize for being the best “infusee” or for absorbing the most radiation the fastest.

I didn’t have to fight. All I needed to do was endure and allow. To accept what was going on and move through it. And to breathe.

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I brought my office work with me to my first infusion. I was going to be there for at least 5 hours so I figured I should use the time “wisely”. I fired up my laptop but soon the Benadryl that I was given to prevent adverse reactions kicked in and brought on drowsiness.

Suffice it to say I might have answered an email here or there, but did little else. The same thing happened during the next infusion, and the one after that. Eventually I realized that the wisest way I could spend my time was by giving myself permission to rest and ride out the treatments.

When infusion day rolled around, I learned to put aside my work duties and family responsibilities, and simply be. It was such an uncomplicated concept, the benefits of which rippled out beyond my treatment. Why did it take cancer to teach me that?

Just Do It: Breast Cancer Survivors and Exercise

Following up on last week’s exercise post, I wanted to focus on two recent studies that really drive home the benefits of physical activity for breast cancer survivors. If you’re not exercising now, here’s why you should consider it.

In 2017, Hamer and Warner published a review in the Canadian Medical Association Journal (Open Access link here). They analyzed 67 existing studies in an effort to ascertain what lifestyle factors were most important in reducing the risk of breast cancer recurrence in survivors.

Whatever you can do right now is enough to start out with. Just keep moving!

The results were striking: of all the lifestyle variables that the researchers looked at, exercise came out on top. They found that engaging in moderate exercise resulted in a 40% decrease in cancer recurrence. This included easily-adoptable, low-cost programs such as brisk walking.

I want to stress: they weren’t talking about doing crazy-high amounts of exercise, but simply adhering to the current physical activity recommendations for US adults, which are as follows (summarized by the American Heart Association and taken from their website):

Sadly, only 13% of recent breast cancer survivors actually met those exercise guidelines, and that number dropped even more as time went on. Consider how that affects overall cancer rates, when we talk about our chances as survivors: if the vast majority of the population is not engaging in a beneficial habit, the reported recurrence rates will reflect that. However, if you do incorporate exercise into your life, one could argue that your chances of recurrence are significantly improved over the numbers usually cited.

In addition, an increase of at least 10% of body weight after breast cancer diagnosis, which unfortunately happens often, increased both risk of recurrence and mortality. Again, patients who exercised were able to avoid this weight gain, improving their chances for disease free survival.

Nonetheless, while it seemed relatively straightforward to achieve the percent reduction in recurrence, the researchers stressed two very important points: (1) this reduction came after finishing treatments, not in lieu of them, so one should not assume that exercise would necessarily take the place of conventional cancer treatments, and (2) sadly, some cancers will recur even if the survivor is doing everything “right” and so if there is a recurrence, it should not be taken as the individual not doing enough. That’s the cruel unfairness of cancer.

It’s never too late to start, but it’s never too early either! Pick a sport and make it yours!

The second study was original research with high-risk breast cancer patients by Cannioto et al. (2020), published in the Journal of the National Cancer Institute (Open Access link here). The study participants filled out a questionnaire about their exercise habits at four time points: (1) when they enrolled in the study after diagnosis (this question asked about pre-diagnosis exercise habits), (2) during chemotherapy, (3) one year after finishing treatment, and (4) two years after finishing treatment.

Once again, exercise was shown as having a significant impact: women who met the guidelines for physical activity (150 minutes/week of moderate exercise) before, during and after treatment had a 55% lower risk of recurrence and 68% lower risk of dying than those who didn’t meet the guidelines.

Even those who only started exercising after finishing treatment still had a significantly reduced risk of both recurrence and death compared to those who didn’t exercise at all. Additionally, benefits were also seen for those who consistently exercised, even if they didn’t fully meet the guidelines. So it seems that any exercise that these high-risk cancer survivors did was still better than not doing anything at all.

The same holds for you!

Both of these studies convey the importance of engaging in physical activity. Exercise is critical for the well-being of all humans, but even more so for breast cancer survivors. Think: when we receive a cancer diagnosis, we are ready to undergo potentially dangerous treatments, risking debilitating side effects that leave us bald, exhausted and wretched.

So why not engage in something as beneficial for body and spirit as moderate physical activity to help prevent the possibility of having to repeat the cancer treatment again?

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A few more bits of information:

The easy-to-read executive summary of the US Physical Activity Guidelines for Americans can be found here.

For a plain-language synopsis of the Hamer and Warner (2017) review, see this Healio interview with co-author Dr. Ellen Warner.

For a plain-language synopsis of the Cannioto et al. (2020) paper, see this article in breastcancer.org.

Tailor your exercise to your abilities…and then keep going!

Keep in mind that terms such as “moderate” and “intense” are relative to YOU. someone just starting out is not going to be able to handle the same level of intensity as a highly-trained individual, and there’s nothing wrong with that. Start where you are–it’s okay.

Finally, Dr. Robert Sallis, chairman of the American College of Sports Medicine’s Exercise Is Medicine inititative, has said, “If we had a pill that conferred the proven health benefits of exercise, physicians would prescribe it to every patient and healthcare systems would find a way to make sure every patient had access to this wonder drug.”

The two studies here show exactly why!

“The Gun Show”: Assessing Biceps Muscle Loss Due To Endocrine Therapy [PHOTOS]

In my last post, I whined about the repercussions of taking aromatase inhibitors (in my case, letrozole) as a way to diminish the amount of estrogen in my body, for the purpose of reducing the risk of breast cancer recurrence.

While I also mentioned letrozole’s effects on my exercise habits, in this post I wanted to drill down on one aspect in particular: muscle loss.

Before I go further, I need to add a disclaimer. Since the time the first photo was taken (the morning before my first chemo infusion), three and a half years passed and I went through menopause. Notably, the menopause was pharmaceutically-driven, starting with tamoxifen and then, after my hormone levels were low enough, continuing with letrozole. However, my body now is dealing with the same aging effects as someone who had transitioned naturally.

Except that my transition came before its time.

The below photo is from April 27, 2017, before I headed to the infusion center for my first dose of chemo. I had been training as normally as I could, under the conditions of lumpectomy and port placement that I wrote about here, and finding work-arounds for exercises that I’d been told not to do.

This is my 51-year-old biceps muscle, before I started the pharmaceutical portion of my breast cancer treatment.

While I lost some size and strength throughout my chemo infusions (here are all the photos), I was able to bounce back and had a particularly strong 2018 (sorry, don’t have good photos of that). But as the endocrine therapy with tamoxifen continued in 2019, to be replaced by letrozole in 2020, I could feel the effects of low estrogen.

On December 11, 2020, I struck the same pose again for sake of comparison.

Is something missing? This is my 54-year-old biceps muscle, struggling to keep up. Note: I am still working out as hard as I can!

As far as muscle appearance is concerned, I have experienced a slow downhill slide. My shoulder is not as peak-y, the biceps itself has decreased in size and I even find it more difficult to hold this muscular contraction. In addition, there’s more looseness in my skin, particularly at the back of my arm, which in part may be due to loss of collagen, also affected by estrogen levels (nice dermatological review by Shah & Maibach, 2001, Am J Clin Dermatol).

I’m busting my butt trying to increase the amount that I’m lifting, but I’m not making progress. Not surprisingly, the decrease in estrogen plays a role in this. As stated by Chidi-Ogbolu & Baar (2019, Front Physiol), “estrogen improves muscle mass and strength, and increases the collagen content of connective tissues”.

It makes sense then that lack of estrogen is going to be detrimental to maintaining muscle. To that point, Kitajima & Ono (2016, J Endocrinol), working with animal models, have found that “estrogen insufficiency leads to muscle atrophy and decreased muscle strength of female mice.”

Not just mice, obviously.

This information comes as no surprise to any woman who’s gone through menopause, I’m sure. But the experience of being slammed through menopause instead of having the opportunity to transition more gradually is yet another frustrating way that having cancer pulls the rug out from under you and reminds you that you are not in control of your life.

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Slowly, yoga is becoming more important in my life and my view of fitness is changing. Good thing too, since I can’t keep beating myself up like this.