franticshanti

Before You Meet Your Oncologist, Be Aware…

…they don’t pull punches.

This is critical to be aware of when you’ve gotten your cancer diagnosis and are meeting your oncologist for the first time. We all go into that exam room fearful but hoping for good news. We want reassurance that it’s going to be okay.

The problem is, your oncologist can’t tell you that. They can’t say that you’ll get through this fine. Because they’re not going to promise you something they cannot guarantee. What they can give you is statistics. However, that may come in the form of something like, “You have an 85% chance of surviving…”, which sounds great, right, “…for 5 years.”

Is it good news or bad news? Their faces won’t tell.

Now, I don’t know how you feel about this, but honestly, when I heard that I thought, um, is that the best you can give me?

While I adore my oncologist, there was no cute wrinkled nose, no “I’m sure you’re gonna be okay” warm-and-fuzzies. It was all, “this is what’s next.”

I’m convinced that oncologists start their day by practicing how to deliver information without emotion, without giving away whether the news is good or bad. As patients, we literally hang on every word, every hesitation, every wrinkle on our oncologist’s face for an indication of just HOW bad the situation is. Some will reveal more than others, but in my own experience, it was “just the facts, ma’am” for quite a long time.

This could be very frustrating. I learned that I needed to get the “rah-rah” encouragement elsewhere.

On the plus side, however, I knew that if something was bad, my oncologist was going to tell me. He wouldn’t be like that friend who assures you your ugly outfit looks good just so that they don’t hurt your feelings. So if it’s any consolation, you’ll leave the office knowing what’s up, and what the doc doesn’t know yet if they’re still waiting for results. No false promises.

That helps get your head past the diagnosis and moving forward into treatment.

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I remember when, after my final infusion, I developed a horrible nail infection that landed me in the Emergency Room. I was stabilized, pumped full of antibiotics and my wound cleaned out. As I recovered, my ER doc came back to see how I was doing because he knew I’d just finished chemo and was familiar with the cancer experience. He told me that he was about to go notify another ER patient that they had liver cancer and wanted to take a breather and come talk to me before he had to break the news to them. It was obvious that he was moved by his patient’s plight.

So this was a great reminder for me that even though the doctors may seem to be stone-faced, they are by no means stone-hearted.

Grounding Through Mental Tracing

I’ve written before many times about different “grounding” techniques. Grounding is what helps move us out of the chatter in our heads and brings us into the present moment, where we can pause and realize that we are safe. It helps put space between our ourselves and both fears about the future and regrets about the past that may unnecessarily cloud our minds.

On days like those, I need to fine-tune my focus. This calls for a grounding technique that won’t be as easy to derail.

Body scans are some of my favorite grounding and calming go-tos. But recently, I was introduced to tracing the outline of the hand with your mind, a focus on just one part of the body. I tried this and found that it worked brilliantly!

As kids, we traced our hands to help us draw; now, it can help us stay present.

Just like when, as a child, you started a drawing using the outline of your hand by placing it on a piece of paper and tracing the around your fingers with a pencil, you can do the same thing mentally. Imagine the sensation of a point of pressure (say, an invisible crayon) moving up your wrist to the outside of your pinkie, around the fingertip, and down the other side into the hollow between the fingers…and doing the same as it moves up and down each finger until it ends up on the outside of the thumb and travels back down the wrist.

What makes this so effective for me is that it is a simple visualization that requires a bit more concentration, and yet it is still uncomplicated. That means that it gives my monkey mind a little extra to focus on, but not so much that it becomes a struggle.

Try it next time you need grounding and want to trying something different.

I Still Don’t Recognize “Myself”

You know how you have a picture of yourself in your mind’s eye? The way you imagine you look?

For four years, that self didn’t mesh with reality.

I still saw the long-haired fitness freak who’d never had a surgery in her life and definitely no serious illness. The one who was remarkably healthy at 50…the one whose co-worker assumed was age 35.

This is a perfect illustration of how I felt post-diagnosis.

That reality changed in an instant. The unbelievable happened, the unexplicable knocked me off my feet. There was no transition time. I went from super-healthy and super-fit to being diagnosed with one of the most dangerous diseases in our experience.

As the saying goes, “If you don’t have your health, you don’t have anything.” My health was everything to me, and suddenly I felt as though I had nothing.

And in the cruelty that is cancer treatment, off went the hair. Now there was no mistaking that I was “sick”. So when I bumped into friends who hadn’t heard about my diagnosis and tried to explain what had happened, they all said the same thing: “I know.”

Every time I walked past a mirror, I would get a shock. And this went on. Through the months of chemo, through radiation, waiting for regrowth that seemed to take forever.

My oncologist told me to be patient, the hair would come back. It was different for everyone. But I was still scared. And acceptance was a new concept that I was not comfortable with.

Yes, I felt I bounced back the year after chemo – working out hard, with the most awesome new-growth hair that random people would stop and compliment. That year, I felt strong and full of promise. I dared to say that cancer MIGHT have been the best thing to happen to me…

But as time went on, reality moved in again and I realized that there really was no going back. And that “lift” that I had gotten after my hair started growing back and I was hitting the gym hard, well, I crashed again.

Picking up the pieces has been a process…

Endocrine therapy pushed me through menopause. My hair thinned. And most devastatingly, I lost two friends who had been diagnosed with breast cancer around the same time that I had been.

I couldn’t celebrate that. And I fought it for months and months.

Four years later, I’m comfortable with calling myself a cancer survivor. But you know what? I still get a little jolt when I walk past the mirror. It’s still not the “me” that I expect to see. After several years of endocrine therapy, I do not look like I used to. My body doesn’t feel like it used to.

So I stopped beating myself up about it. I need more rest time between workouts. I get tired earlier in the evening. Yeah, I forget things. A lot. So I write more notes and declare my intentions out loud (“I’m going to have to take the next exit…”) so I remember what I’m doing.

I still don’t recognize “myself” in the mirror, but that is a previous “self” who was the right “self” for that time. The current “self” is wiser and more gentle with her body and her spirit.

And I do recognize her.

Kindness to Cancer Patients

REMINDER: Be nice to other cancer patients and survivors.

It feels weird to write that, because why wouldn’t you? So many of us who have had the cancer experience feel like we want to support and encourage those who come after us. We are driven to help. But that’s not always what happens.

Let me provide an analogy of sorts:

When I was pregnant with my first child, a daughter, I got an enthusiastic positive response from so many other moms. Everyone was ready with helpful tips and good wishes. At the same time, many also started in with stories of their own experiences, often times telling vividly about their struggles and pain and even, “Oh, girls are the absolute worst!”

Some experiences may leave us feeling “unfinished”, needing a kindred spirit to tell our story to. But we need to be aware of whose ear we’re bending.

Why would some women do this? I can only hazard a guess: perhaps because no one wants to listen to difficult stories. Childbirth is a momentous life event brimming with intense emotions that friends and family forget, but the mother in question holds on to because they are tied into so much of her. Her lingering feelings are brushed aside. No one else cares to revisit the labor pains or complications. As a result, tales of the experience are often not expressed until she sees another woman, a kindred spirit, embarking on the same journey.

So, too, with cancer. And it can be a difficult and awkward subject for many, cancer patients or not. Those of us who are breast cancer survivors may want to “talk about it”, and thankfully there are support groups for that. But friends and family may not understand the scope of the emotional fallout. We get comments like, “well, at least you got a nice set of boobs out of it,” and are expected to move on. Conversation over.

And then we see another woman going through this, and it’s difficult to resist inundating her with your own experiences and emotions, all in the name of letting her know that she can get through this, just like you did.

Does it help? Maaaaybe? But as we all know, everyone’s experience is different. What happens is that you’re not “preparing” her for what might come. You’re inducing anxiety in an already stressed-out situation.

I experienced this myself after my diagnosis, when, a week before my surgery, I ran into an aquaintance who had gone through breast cancer treatment several years before. And I know she was trying to offer support and make me feel better, but it didn’t. She made me anxious about my upcoming therapies, including ones that she not gone through herself. While my intent as a newbie was to share about my diagnosis because I felt that she would understand, I ended up being a sounding board for her concerns. Concerns that were valid, definitely, but not appropriate in the context of a very fearful cancer patient.

Offer support without taking over the conversation.

For the record, this was a lovely woman with whom I’ve had numerous subsequent exchanges. There was no ill-will intended. But it’s likely that she didn’t have many opportunities to speak to relate her story to other women, and given the chance, just needed to talk.

And I know that in my exhuberance to show support for other cancer patients, I’ve probably tripped over myself in an attempt to reassure too much. Offer too many hugs. While also trying to be noncommital about outcome. That’s a really messy combination.

So please, let us remember (and by “us” I mean myself!) that sometimes the best form of support for a newly diagnosed cancer patient is simply being there with them and holding space for what they may be going through. They will make their way through the experience, day by day, just like we did. There will be time to talk about the ups and downs of treatments.

But maybe not right now.

Grounding though Contact Points

Lately I’ve been speaking with people who are having a hard time dealing with anxiety, so I thought it would be worthwhile to dive deeper into grounding methods.

For me, hands down, strong neutral physical sensations (with “neutral” being the operative term here) are by far the best ways to pull my head out of swirling thoughts and get back to where I am now on the Earth.

Buttocks and feet are great focal points for drawing attention away from rapid breathing or heartrate.

Currently, I’m focusing on touch points: those places on your body where you are making contact with any surface. This is highly effective because it is well-suited for any situation. You don’t necessarily need to be in a particular position, nor do you need a quiet space. So if you’re in the middle of an exam, sitting in your boss’ office, standing at a podium or walking down the hallway of a hospital, this grounding method can shift you back to the present moment.

The idea is to focus on the sensation of pressure. My suggestion would be to bring your attention to whereever on your body you can sense that contact with a surface, giving preference to places further from areas that might be reinforcing anxiety, such as the chest region and a rapidly beating heart. So, hands, feet and buttocks would be good candidates. If you’re walking, then pay attention to the change in pressure of your steps as you put your foot down and lift it again.

Feel into these body parts, sensing how the pressure feels against them. You can also bring in sensations such as tingling and temperature. Like an investigator, experiencing these sensations as if for the first time, get curious about their quality. If needed, squeeze the muscles, but then make sure to relax them too, so that you’re not clenching. Then see if you notice a difference in sensation.

Try it right now. Go ahead, I’ll wait…

You don’t need a special place to practice grounding yourself. Where you are right now is perfect.

Did you try it? And did you feel anything? The type of sensation doesn’t matter here. The main goal is to get out of your head, which may be in overdrive. Paying attention to what your body is doing RIGHT NOW helps move you away from thoughts of dread and gives you a handle on your reactions.

Important: as with all calming techniques, this takes practice. It is not a one-time thing that you try, nor is it a pill that you pop and everything settles down. The more you practice this, especially when you’re in a peaceful surroundings, the better you will get at shifting your focus during times of anxiety. Just as with a formal meditation practice, it is consistency that will improve your focus and thereby your abilities.

The added benefit to practice is that you will realize you *can* do it, that it *does* work, and you will build confidence in yourself that you can handle it. So in an anxious moment, you’ll be able to say, “I got this” and bring yourself to a more manageable place.

“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.

Staying Present: Dual Focus Meditation

If you’re new to mindfulness meditation, you might have found it difficult to hold focus on your breath. But the reality is that you don’t need to be a beginner to struggle with this. There are some days that the mind refuses to be still and even a long-time meditator will find themselves carried away by thoughts.

In an effort to help keep my head here and now, I started paying attention to how it was that I lost focus. For me, it happens during the lull between breaths.

What is that lull? Well, there’s a very short, almost imperceptible pause between my inhale and exhale. I’m okay during that time because I can focus on the sensations in my chest and belly. That’s not the pause that gives me problems.

It’s after the exhale that I experience a longer pause before the next breath begins, especially if my breaths are slower and deeper, because my body doesn’t require another breath right away. And that’s when I’m more likely to “see something shiny” and my mind wanders off.

But I found that by focusing on my hands during this pause, I could keep my random thoughts at bay.

If you’re having focus issues and would like to try this, all you need to do is consider your focus as cyclic. First, with the inhale and exhale, focus on the breath sensation–choose wherever you feel the air movement most distinctly, such as the rising & falling of your chest, the rushing of air in and out of your nostrils, or similar. It will be different from person to person.

Next, during the pause between your breaths, turn your focus to the sensations in your hands and fingers. There may be some tingling or throbbing, or perhaps nothing discernable. That’s okay. Just see if there’s anything there that you can feel.

Then, when your next inhale begins, pay attention to the breath again.

The main point of this exercise is to stay present during those times that the mind is very active.

It may sound like you’re jumping from one body part to another, but in reality the transition is very smooth. The focus on the hands gives you a place to go until the next breath returns, all the while keeping you present.

When I first tried this, I thought I was “cheating” because I wasn’t staying with the breath. And I had to remind myself that the purpose of this wasn’t to earn a gold star for being the best “focus-on-only-the-breath” meditator. It was to stay with whatever was happening “now”.

Allowing a slight change in focus when my mind is active keeps me present. Staying present calms me more effectively. And that helps me return to the meditation cushion day after day after day.

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There is beauty in the stillness that we experience between breaths. This dual focus practice isn’t meant to pull us away from that. Rather, it gives us a focus for those days when the mind is active and easily distracted, and appreciating that stillness is not available to us.

Sleep: Still the Ultimate Good

Some time back I posted sleep researcher Dr. Matt Kelly’s TED Talk on sleep, which I highly recommend. Now, the American Academy of Sleep Medicine (AASM) has issued a position paper which states unequivocally that “sleep is essential to health”.

As noted in the position paper, “Healthy sleep is important for cognitive functioning, mood, mental health, and cardiovascular, cerebrovascular, and metabolic health.” Anyone who has suffered through the daylight savings time change – that would be most of us – can tell you that even missing out on a single hour of sleep can leave you feeling off for a few days.

Sleeplessness is too often an occurence for too many of us.

And many of us have likely had the experience of sacrificing sleep for school or work projects, adjusting to newborns, or other similar temporary situations, not to mention the occasional middle-of-the-night stress session.

But sleep disruption on a chronic scale has far-reaching repercussions, and has been “associated with an increased risk of mortality and contributes to both the individual risk and societal burden associated with several medical epidemics, including cardiovascular disease, diabetes, obesity, and cancer.”

In particular, shift work has been associated with an increased risk of cancer, due to the persistent disruption of the body’s biological clock, as reported in a recent CDC blog post based on reviews by the National Toxicology Program and the International Agency for Research on Cancer. Data came from both breast and prostate cancer surveys. [The CDC post does outline what shift workers can do to protect themselves.]

I suspect that data from shift workers will reveal the influence of factors other than simply how long one sleeps, for instance, the significant effect of melatonin’s known anticancer properties (Hill et al., 2015, Endocr Relat Cancer; Yi et al., 2017, Oncotarget; Bondy & Campbell, 2018, Int J Mol Sci).

While the studies may be confusing, good sleep hygiene is always important.

According to the AASM position paper, the consensus among different sleep-related organizations is that adults require at least 7 hours of sleep regularly, with the range being 7-9 hours. While this seems straightforward, one meta-analysis (Lu et al., 2017, Biomed Res Int) of 10 studies suggested that sleeping excessive amounts (over 9 hours) was linked to an increased risk of estrogen-positive (but not estrogen-negative) breast cancer for women. At the same time, Xiao et al. (2016, Sleep Med) found that short sleep duration was associated with triple-negative (but not estrogen-positive) breast cancer in black women as compared to white women, suggesting racial disparities in the data, so further research is needed.

Confusing? Yes, this is clearly an area that calls for more study. Some clarification came recently from the publication of the “Million Woman Study”. This was an extensive prospective multi-year study of women in the UK that, you guessed it, found no association between breast cancer and sleep of any duration (Wong et al., 2021, Sleep). Nonetheless, the authors did note some shortcomings of the study, so this question is likely to be revisited.

Take home message? Conflicting studies aside, everyone would agree that good sleep hygiene (see CDC recommendations) is important no matter what your cancer risk. With our lives running 24/7 and sleep schedules constantly being disrupted, we should take a clue from the animals who settle down as the evening begins, like clockwork. We might have advanced as a civilization, but we can’t get past the reality that when it’s dark out, it’s time to hit the sack.

Does Mindfulness Make a Difference?

Yes, yes it does.

I am AWARE.

What used to feel like a jumbled mess of emotions and sensations before, now makes sense to me. Intense feelings don’t come at me as quickly as they used to and there’s more space between a stimulus and my response to it.

There is a PAUSE.

I may still feel overwhelmed by circumstances when something unexpected happens, but now I know what’s happening and can pull myself out of it.

That doesn’t mean that I’m perfectly calm and don’t get frightened, anxious or frustrated. I do. You can see that in some of my posts, because I try to be very honest about what I’m experiencing in the moment. But no matter how deeply I dip into fear, I don’t stay there.

I can find the CALM amidst the CHAOS.

When things get intense, I know how to feel into my body. I recognize the physical sensations and I focus on releasing them. Smoothening them out. Breathing through them.

All those abilities were always available to me, but I resisted calming myself. I am aware that on some level I used to feel that anxiety was a necessary way to express my fear; that it was necessary to descend into fear to express my emotional state to others, so that I would be taken seriously. While it sounds odd to read that now, it was only through learning that I was able to soothe myself that I learned I didn’t need to commit to the torture.

I return to the PRESENT.

When I start thinking about fretful things in my past or fearing the possibilities of the future, I can now recognize that my mind has drifted away and I can pull myself into the present, feeling into my bodily sensations. I can break through the dark tumult that’s enveloping me. And suddenly, the noise is gone and I’m standing with my feet firmly planted in my room. I hear the birds and I find peace.

I know I am SAFE.

I have learned how to feel into my body to help it bring me back to the present and away from fearful thoughts.

I realize that there were behaviors that I engaged in during times of anxiety in the past, like pacing back and forth, that actually soothed my nervous system. Just as rhythmic rocking soothes a child. My body was wise and knew what I needed. When, years ago, the burden of my workload chained me to my desk and prevented me from movement, my anxiety skyrocketed and became almost unbearable. That was a clue, but at that point in my life, I didn’t know how to listen to my body.

Now I know what I must do to calm down and I allow myself to do it. But this change didn’t come about suddenly.

It takes PRACTICE.

Practicing mindfulness meditation when I am at peace allows me to build up the habit that carries me through difficult times. I practice daily. Somedays I can focus on my breath perfectly; other times I lose myself in thought shortly after I’ve begun. Regardless, I don’t give up. Even the “bad meditation” days are better than no meditation at all. Each session strengthens my mindfulness habit.

Every day. No matter what. It makes a difference.

Is It Metastasis or Menopause?

Ever get the funny feeling that something’s wrong?

Like things are a bit “off” but you can’t be sure? I’ve been dealing with that ever since I got off letrozole, an endocrine therapy for breast cancer with a reputation for being difficult to take.

As of this posting, I’ve been off letrozole for 117 days exactly–yes, I’m counting. I’m still shaking off side effects like stupid-crazy joint stiffness, but at least I can tell things have improved.

That’s not what I’m talking about here.

*I’ve taken a few rides in the MRI tube already. Not in any hurry to repeat that.*

Right now I’m having some “really intense” memory and focus issues. I’ve put “really intense” in quotes, because I talk in superlatives so that my concerns are taken seriously. It’s a bad habit, especially when speaking to an oncologist, because it’s a sure way to end up in an MRI tube. Again.

In the past, my oncologist suggested that my memory problems might have been related to anxiety and not the medications I was on. That’s quite possible, although it’s hard to tease apart “anxiety” and “med side effects”. I mean, simply being told you have cancer causes an immediate spike of the Stress-O-Meter. For someone as anxiety-prone as me, it’s like I’m constantly red-lining.

Now I’m off the endocrine therapy and my memory and distractibility seem to have gotten even worse. What I had before wasn’t like THIS.

It’s kind of like saying, “This hurts. I think I’m being hit on the head with a hammer.” But then you actually get hit by a hammer, and think, “WHOA, now THIS is being hit on the head with a hammer!”

If thoughts are beads on a string, my beads are dropping off at a constant rate, leaving me wondering what I was about to do three seconds ago. And getting distracted by shiny objects. Couple that with having to learn a complex new financial system for work (grrrrr, Larry Ellison), not having helpful documentation to do so and having to go through that while being mainly confined to my bedroom for over a year…yeah, it’s a mess.

I am **not** being rational and I know it. But I’m still on high alert and dialing my fears down is going to take time.

Because my breast cancer was HER2+–which has been associated with metastases to the brain–my anxious little self immediately thinks, “Wait, maybe this is cancer’s spread stealing my thoughts???” I think that I will forever be jumping to that as the first possibility.

That’s not completely unreasonable, either. According to “Medical News Today”, memory problems are listed as one of the symptoms of brain metastases, along with headaches, stroke, seizures, confusion, dizziness…okay not really experiencing any of those.

And the Mayo Clinic metastasis website asks: what are the most likely causes of my symptoms? So, I admit, a brain tumor probably isn’t, given all the other more likely possibilities: menopause, work stress, loneliness, lack of purpose…and *cough* listening to Twitch video streams while I’m trying to focus.

So really, these memory issues could be a completely normal effect of menopause, but in the cancer context the possibilities are frightening. It takes a lot of perspective to be able to look at what’s going on and realize that it’s not aberrant or dangerous. I feel like an idiot for jumping to the worst conclusions, but here I am…

It’s a survivor thing.