Permission to Grieve

I feel like I write a lot about loss when speaking of my cancer experience. That may seem like a downer, but truly, cancer treatment is a complicated process in more ways that expected. Bear with me for a few…

There’s so much to lose: lose control of your life, lose your hair, lose your lunch, lose a lot of money, lose time at work, lose your libido, lose your overall quality-of-life. In more extreme cases, lose your spouse and your house. And unfortunately, sometimes lose your life. On some level most of us may feel some sense of loss.

Cancer is complicated because it can bring on a huge sense of loss.

I keep talking about this because it’s not something that’s fun to talk about. Most people don’t know what to say when they find out you have cancer. They’re hesitant to say something to “remind you” of the illness, as if you could forget. Relationships can become strained and awkward.

Interactions with cancer patients often turn into a “rah-rah” fest, with well-meaning friends showering you with “you got this” encouragement. But that’s not always what you need to hear.

I urge everyone who cares about the well-being of a cancer patient to allow them the opportunity to express how crappy things are. To simply listen and not contradict them. Because being insistent that it’s not okay to talk about anything negative creates an even bigger sense of loss for the patient.

Does this sound wrong? We’ve been led to believe that being positive is the only way we should be and that it’s no fun to be around those who are gloomy.

But consider this: would you go to a funeral and try to get the grieving family to “cheer up”? Would you try to tell them jokes and elbow them into smiling? I don’t think you’d be very successful and might be escorted away – at the least your invitation to the meal afterwards would probably be revoked.

Forgo the cheerleading and simply offer an ear and a shoulder.

We know that behaving this way is unacceptable, at least in most cultures (I can’t speak for everyone). Grieving is an important part of the human condition and not being allowed to grieve loss can be very stressful and lead to problems down the road.

So it is for the cancer patient. There’s so much more going on than simply increased doctor visits and medical procedures. Minimizing the impact that this has on their lives may range from feeling unfair to devastating.

Of course, every patient is different and their reactions will differ too. But I would urge loved ones to err on the side of caution, give their cancer patient the time and space to process and grieve and save the exhuberant “cheering up” for a time when the patient seeks that out.

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Ok, ok, the “loss of body odor” is one loss that’s not so bad!

Victims of Our Own Success: Premature Aging in Cancer Patients and What You Can Do About It

So this isn’t the kind of news you want to see. But there’s still hope…

A scientific journal article from 2017 (Cupit-Link et al., 2017, ESMO Open) describes the toll that cancer treatments can take on the patients subjected to them.

After being told you have cancer and deciding to proceed with the treatments that will offer you the best chance of survival…it’s disheartening to learn that many of those same treatments can accelerate aging, causing damage to your DNA, heart disease, hearing loss, cataracts, liver and kidney diseases, brittle bones, lowered immune response and other cancers (!) among other issues, depending on the type of cancer and treatment (see WebMD article).

The treatments that can save our lives from cancer may hasten our demise from age-related factors.

This is a problem resulting, ironically, from the success of treatments and extended lifespan of cancer survivors. Back when cancer was deadly with a low survival rate, no one was too concerned about the state in which survivors were left in; simply surviving the cancer was enough. Now that people are beating their cancers at greater rates, quality of life has become a much bigger issue.

While the most striking detriments are seen in childhood cancer survivors, accelerated aging occurs in most former cancer patients.

Doctors and researchers are taking note. At the time of this scientific article’s publishing in Dec 2017, there was already discussion on how to “de-escalate” cancer treatments as a way to decrease the amount of cellular damage to patients.

On a personal level, I chose an effective drug for my HER2+ breast cancer (Herceptin) over a more effective drug (Perjeta) that carried a risk of greater cardiotoxicity. I made that decision because although I was terrified of cancer, I was also afraid of what lasting effects the drug would have on me once the treatments were over.

Cancer treatments are strong but healthy living can help mitigate their negative effects.

But even if you didn’t have the opportunity to make such a choice, there’s still something that you can do. The authors of that 2017 paper noted that cancer survivors can take back some control over their health by adopting or continuing those healthy lifestyle habits that should sound familiar by now: not smoking, limiting alcohol, exercising regularly and eating a healthful diet.

To that, I would also add, managing your stress levels, the importance of which has been demonstrated on a cellular level, and getting optimal amounts of sleep.

Improving longevity is a hot field for research as scientists work to determine what aspects of one’s lifestyle show the greatest promise in keeping the body young. This topic is complex and new data is coming in on a regular basis, so I won’t delve into details here, but it stands to reason that being sedentary and eating a high-sugar, high-processed diet is not going to do you any favors.

Just as cancer treatments may have a negative effect on overall health, you can win back some lost ground by making healthy, informed decisions on diet and exercise. No one wants to limit their cancer treatment options, so this is one form of insurance that you can give yourself. No matter what else happens, a healthy lifestyle will benefit your quality of life. And that is an improvement that is yours to keep.

Putting a Hold on Looking for Trouble

Last year at this time, I feared that I had heart issues based on what I had read about some of the cancer medications that I had been on, so I went to the cardiologist and they administered some tests. When I came back to the cardiologist to discuss results with the doctor, I was told that they had found “something” in the echocardiogram and Holter monitor readings.

But I still had questions, so I had a consultation with the cardiac nurse, who went through everything with me.

In the back of my mind, there’s a fear that my body is harboring serious health problems.

And it turns out that while they did find “something”, it wasn’t really anything out of the ordinary, beyond normal wear and tear. I was assured that my heart was very strong and healthy and I could continue to push through high-intensity workouts.

Still, it was recommended that I get checked out again this year.

But you know what? I’m not going right now. It felt like anxiety about the scans and then waiting for the results did worse things to my heart than whatever I might have been already experiencing.

I talked this over with my oncologist, who agreed.

The fact is, there are things that you need to get checked out, especially as a cancer survivor. But for other things, especially without a specific indication that there’s something wrong, you are simply looking for trouble. And if you’re looking for it, you’re going to find it.

Our bodies are not perfect. And the older we get, the more aches, pains and abnormalities we have. That doesn’t necessarily mean that there’s anything “wrong” that immediately needs to be fixed.

For now, I’m halting my search for trouble and taking the time to breathe deeply and just live.

Anxiety was the driver for me to get tests run. I was overreading about everything that could possibly go wrong–given the medications that I had been taking–and then rushing out to make sure that it hadn’t yet in the hope that I could rectify any budding issues.

And to be fair, there are still things that I could look at, still specialists I could contact. But perhaps I need to chill a bit…

…but perhaps I need to chill a bit. If it were to progress, would I stop exercising? Absolutely not. So then perhaps it’s best to take a wait-and-see approach for now.

All of this is so different from cancer, which drives us to seek treatment immediately. I am forever primed to worry about what might be happening in my body. But I also recognize this as a psychological side effect of cancer. I can’t let fear take over the rest of my life.

So for me, it’s time to stop looking for trouble, stop fearing for the future and simply relax and enjoy what’s happening in the present moment.

Four Minutes of Hovering

Last week I had a 3-D mammogram. This scan marks a bit over five years since the diagnostic test that indicated I had a solid tumor on the outside of my left breast.

Heading into this appointment, I wasn’t particularly worried. Yes, I admit to having little heartbeat skips over “lumps” in my breast that aren’t really lumps: if you recall, I had felt something before my last oncologist visit; my doctor reassured me it was nothing.

I will never again hear the word “lump” and NOT think of cancer.

And because last August I’d had a chest MRI, a more sensitive scan than even a 3-D mammogram, it was HIGHLY unlikely that there was anything to be found in this mammogram.

But still, after the pictures were taken and the mammography technician left the room to consult with the radiologist, I got that all-too-familiar uneasy feeling.

WHY? I knew that the radiologist wouldn’t find anything. The technician practically said that out loud, since she was aware of my recent MRI.

But still.

I sat alone in the mammography room, breathing, looking at the clock on the wall and simply hovering. My attention was like a butterfly looking for a place to alight. I wasn’t holding my breath…but mentally, I had put the rest of my life on hold when the tech stepped out the door.

It took all of four minutes and the mammographer returned and gave me two thumbs up.

For four minutes, I had no plans for anything outside of the room I was in.

I breathed a sigh even though I had expected the good news. And while I wasn’t “freaking out” waiting for the response, it became apparent to me that I might always feel uneasy during that period of uncertainty.

I didn’t want that. I wanted to be completely unaffected, as if I had never had a bad experience and my heart was calm.

But hovering it was, because there are no guarantees. And as the gears of my life started turning once again, I remembered that there was no going back. All the negatives that have happened have happened and I can’t change that.

Eventually, years from now, my emotions may soften, but in the meantime, I’m just going to have to be okay with hovering for a few minutes.

And Suddenly, Another Freakout

Last week, I had a Pap smear. If you’re not familiar with what that is, you must be either male or blissfully young. In brief, it’s a test for cervical cancer, customarily done every 3-5 years.

I knew my results would come this week, along with other lab results. I was in a work meeting today when I noticed my phone was vibrating. It was my doctor’s office…and I was too late to answer the call.

Me: It’s probably nothing.
Also me: OMG I NEED TO CALL NOW!

The doctor’s office didn’t leave a message.

And that’s when I officially tuned out the meeting. A flood of possibilities came rushing in. My boss needed to talk to me but I was trying to suppress the growing urge to call the doctor’s office immediately.

The urge won. I called and left a message and went back to work, but my head was elsewhere.

The fact that there had been no message was extremely unsettling, because it made sense that if there were really bad news, the office would want to speak with me directly instead of leaving a voicemail.

And my reaction shouldn’t come as a surprise, because having been hit with a cancer diagnosis before, I’ve become hypervigilant. Like it or not, my brain wants to prepare for the worst so that I don’t have that horrible fall from thinking that everything’s just peachy to slamming into a nightmare.

It doesn’t help that I’ve read sooo many stories of women talking about being completely blindsighted by frightening diagnoses, and all of them saying that they thought nothing of the missed call from the doctor since they knew they were perfectly healthy, blah blah blah.

Gotta be prepared, ya know?

Of course, I know better than this. And at least I was aware of the hypervigilance, aware of my body’s reactions and aware that I was blowing things out of proportion. But it’s that uncertainty that is so difficult to take. Even though I know my response, I know why it happens and I know that chances are everything is ok…I want that certainty.

As it turned out, the call had come from the nurse assistant to let me know that my blood work results had come in. This was a relief, although I admit I considered it a defeat that I couldn’t be mindful and breathe through it all.

Then again, as a cancer survivor, I need to cut myself some slack. Getting slammed with a devastating diagnosis once leads to understandable echoes, no matter what test results I’m waiting for.

For now, I’m calm. Of course, my actual Pap smear results aren’t in yet. Those should come tomorrow or the next day. The nurse assistant told me that they’ll probably be normal (OMG, how can anyone say that????) and they’ll be loaded onto the patient portal…unless they’re not normal. And then they won’t be.

Guess whose heart will be fluttering for the next few days?

Not mine, because I’ve got it together.

Kind of…

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To be fair, I didn’t totally freak out over this. But scanxiety over test results is getting a little old, honestly…

Five Years Down and Moving Along

I had another oncologist appointment last week. This one was a milestone, since it officially marks five years since my breast cancer diagnosis.

Five years ago, I was told that with triple-positive breast cancer I had an 85% chance of survival…but there in the fine print was added “five-year survival”.

Delays in routine care due to the pandemic have resulted in more late-stage diagnoses.

With advances in treatment for HER2-receptor-positive tumors (HER2 being the third marker in “triple-positive”), that percentage has improving. But it’s still interesting to note that there’s a finite end to what reliable survival info your doctor can give you, since it’s hard to run longitudinal studies with a large group of participants.

In any case, my oncologist was happy to see me alive and kicking. With the pandemic, women voluntarily and/or involuntarily delayed preventative care, and as a result, there has been an increase in the percentage of women presenting with advanced-stage breast cancer (from UC San Diego Health). Given how far treatment itself has come, this is a distressing statistic because it means that we have effective treatments but patients are not getting them soon enough. So perhaps, for him, I was a five-year treatment success in the midst of all of this.

My oncologist’s concern now is less that my tumor will recur and more that whatever conditions were responsible for the first tumor might result in a brand new one. He still checked me over carefully. My bloodwork looked good with only a lower white blood cell count (“that may never recover,” he’s said in the past). I have no headaches, my bone pain has significantly decreased and other long term physical side effects from endocrine therapy have just about Sudisappeared.

Five years post-diagnosis I’m turning down another path, one that I would have never explored had it not been for what cancer made me face.

I’m still dealing with things like distractability issues, but that could also be due to menopause and the pandemic situation and maybe just the march of age in general. I’ve noted before that it’s hard to pull apart all the factors to identify a single culprit.

My oncologoist remarked that I looked like I was doing well, that I exuded a positive “aura”, and while I’m sure he didn’t mean that metaphysically, the truth is, I feel like I’m finally moving forward in my life again. This coming weekend I start a three-month yoga teacher training course that will move me down a new path for the future.

I still plan to keep posting weekly during this time. We’ll see how it goes!

What If It Isn’t?

“Supposing a tree fell down, Pooh, when we were underneath it?”
“Supposing it didn’t,” said Pooh after careful thought.
Piglet was comforted by this.

A. A. Milne

So, I felt a “lump” under my left nipple, what I refer to as my cancer-side. It wasn’t the same kind of lump that I remember from cancer but when I thought of how I’d describe it (mass, thickening, etc.) I came up with cancer-sounding descriptive words.

This “lump” was also way bigger than my tumor had been.

I think I feel “something” and –BAM!– my mind takes me to worst-case-scenario land.

Now you might think that I would reason with myself. I’d had an MRI in the late summer that showed nothing. A real lump that big would have shown up.

Again, it wasn’t a lump, it was a “lump”. But in the back of my mind, a film starting playing…

I was writing letters to my friends on how much I had appreciated their friendship. Practicing how to tell my kids that I wouldn’t be around to see them graduate from college. Posting my final thoughts here.

It sounds sooo melodramatic but my brain is like a motor boat left unattended with the engine running. And it’s just heading away on its own on a course that no one plotted.

Why do I “go there”?

There is a part of the brain called the Default Mode Network (DMN), which is the area that is more active when you’re at rest and otherwise not focusing on anything. There is a nice “plain-English” explanation here (from an accompanying article to meditation teacher Jon Kabat-Zinn’s Mindfulness course on Masterclass.com). It describes the role of the DMN in “self-reflection…social evaluations…memories…envisioning the future”. And it also notes that problems within the DMN can predipose people to a variety of cognitive issues, including anxiety.

Start my motor, cut me loose…and off I go.

This would explain a lot about my personal default mode.

The article goes on to describe how meditation can “keep the mind from wandering into stressful territory, like reliving traumatic events from the past or anxieties about the future.”

Well, it’s good that I’m meditating, then. But I’ve already put a lot of practice into panicking. I’m an expert hand-wringer. I have a lifetime of experience helped along by a series of anxiety-provoking events. Meditation is chipping away at my hypervigilance, but it’s a slow process.

The main thing that has changed, however, is that now I’m more aware when the motorboat putters away. It used to blindsight me and before I knew it, I was hit by a tidal wave of anxious sensations (tightening, gripping, nausea…). I didn’t realize that this habit of automatic thoughts was driving my anxiety.

Now, when I start down the road of “what if it is…”, I can stop and ask, “what if it isn’t”?

And that comforts me.

Nothing to Fear but Fear…Sort of

About five years ago around this time of the year, I had an uneasy feeling.

So, let me back up. The previous August 2016 I had felt a small lump in my left breast. It wasn’t all that different from another lump that I had gone to see my Nurse Practitioner about in late June 2016, and she had put my fears to rest.

Still, she noted that I hadn’t had a mammogram since 2013, so she wrote me an order for one so that I could keep on track with my screenings.

But I dragged my feet on the mammogram. And when the August lump appeared, I decided to wait until it disappeared–you know, like they always did–before setting up the appointment. Because going into a screening knowing that I had a lump seemed terrifying.

You can’t hide from your fears, but that didn’t stop me from trying.

It didn’t disappear. I kept feeling it, pressing it to see how squishy it was, did it move about, was it getting bigger. And all the time, wondering how long it would last. It was hanging around longer than I expected.

But I still waited because I was afraid. I didn’t want to go to the mammogram and have the technician look concerned. Maybe she’d call the doctor in and the doctor would look concerned. Maybe they’d suggest more tests.

I *knew* it was nothing because it had to be nothing, but I didn’t want to risk having the medical professionals think it was something because that would be terrifying to me when I really knew that it was nothing. I didn’t want to experience that fear needlessly. I was afraid of being afraid.

So I waited until around this time of the year in 2017, when, after talking with my mom, we both agreed that getting the lump checked out would relieve my building anxiety. I imagined a pleasant conversation with the Nurse Practitioner as she would say, “Don’t worry, it’s nothing.”

Except that’s not what my NP said. Her expression went from friendly-smiley to concern, and she told me that I needed to get that mammogram done as soon as possible. All that fear that I’d tried to avoid by not getting the screening suddenly hit me at once. As the NP left the examination room, she admonished me to not put the mammogram off.

The order that I got read, “Mammography and Diagnostic Screening”. The left breast on the picture on the sheet was circled. I think. To be honest, I don’t remember much more than that. To an outsider, I was just going to have a suspicious lump checked out. But inside me, there was a tornado of anxiety whipping around unchecked.

I know I know I know…but at that time, the fear of what might be overpowered common sense. So I waited.

I had waited six months simply to avoid fear. I was so afraid of the fear that I was willing to risk my life–even though I hadn’t see it that way. The overwhelming need to not experience fear trumped everything else because it was so horrible that I couldn’t seen past it. Nothing else mattered.

Believe it or not, I didn’t realize that I had been suffering from severe anxiety for a number of years. It was always bubbling right by the surface, occasionally boiling over, but never sufficiently dealt with. It had built up throughout my life through an unfortunate series of events and I had become worse and worse at shaking it, but the two years prior to my diagnosis brought some of the longest bouts of chronic anxiety and feelings of worthlessness.

And all that fear that I had, that reason for not getting the lump checked out, that fear that almost cost me my life? Cancer was what forced me to face it. The most feared disease that I could have imagined ironically put me on the path to finally dealing with one of the most crippling issues of my adult life.

No, I’m not going to say that I’m thankful for cancer. Because that would be ridiculous. But I can now step back and see the worth of fearful experiences and understand that sometimes it’s the horrible things that push you into the most meaningful personal growth.

Gratitude: It’s Not Just for Big Things

A number of years ago, when my kids were still very small, we lived in an area with brutal winters. That meant sub-freezing temperatures for weeks at a time. Money was tight so we had to keep the thermostat in the 50s overnight and in the low 60s during the day. To make matters worse, our bedroom was in a part of the house that the radiator pipes wouldn’t warm properly, so it was always cold there at that time of the year.

Gratitude for a cup of tea and a quiet moment to write – that is enough.

And by “cold” I mean, the bedsheets would be literally frigid when it was time for bed. So much so, that my joints would ache and I’d be miserable until my body heat could warm them up.

This continued for a year or two until I found an electric mattress pad. The first night that I crawled under the sheets with the heat turned on, I thought I’d won the lottery.

There were so many negative parts to the years we lived there, but going to bed with warmed sheets overwhelmed me with gratitude for the simple pleasure of removing the pain of the cold.

The reason that I’m telling you this is that it’s so obvious to be grateful for the stark changes in our situation. It’s a no-brainer.

But there is no need to wait for something like that. There are simple things that we take for granted that it would be so easy to be grateful for.

Turn your attention to little pleasures and acknowledge their importance in your life. Take some time to sit and bring them to your awareness. Feel into how they lighten your existence. Maybe thinking about them makes you smile. Or maybe the fact that something is simply working properly can be enough to help us realize how fortunate we are to have it at all.

Whatever it is, open up and invite gratitude in.

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Maybe generating gratitude during bad times is exactly what we need.

Those of us who have recently gotten a cancer diagnosis may feel a touch bitter about this concept. Understandably, it may be easier to be grateful when you’re not dealing with a serious disease. And no one would blame you for having a hard time generating a mood of gratitude.

But perhaps that’s exactly when you should look for things that elicit a sense of gratefulness, no matter how small. It may be one of the most important things you can do to maintain a sense of well-being in a difficult time.

Making Mondays Bearable

As 2022 approaches and we face the prospect of having another twelve months speed by us again, I’ve found it useful to sit down and take stock of where I was last January, what changed over the past year, and with what attitude I will enter into the next 12 months.

One thing that has caused a great deal of anxiety for me has been work, even with having one of the greatest bosses in the world and a flexible work situation.

My work situation is quite positive, but anxiety has left me with emotional claustrophobia.

Why? Because my job has also been associated with some of the most wrenching anxiety that I have ever experienced, including being diagnosed with cancer.

What’s resulted is that even in a supportive and stimulating environment (although not my passion, admittedly), I’ve felt trapped, like an animal trying to scratch my way out of my cage.

This past year, I came up with a tactic to at least partially relieve this feeling.

Now, I actually look forward to Mondays, because I’ve set up a beautiful association for the first day of the workweek with something very indulgent.

First, I work from home on Monday. This softens the dread that I’ve historically felt on Sunday nights, knowing that the weekend is over. The transition to the office is gentler.

Second, with some changes in my kids’ school schedules (one in college living at home and the other in high school), I start my workday an hour later. This has given the entire family reprieve from the stress of waking very early and starting the week sleep-deprived.

It also gives me to time to enjoy a cup or two of decaf in the morning.

Third, when the rest of the family leaves for school and work, I have 45 minutes before my own workday starts. I set up my rower for a 30-minute row, facing the tv/computer monitor in the living room…

Great exercise + fun videos = an amazing start to Monday!

…and put on a half-hour YouTube video of something I really enjoy that I might not have time to watch otherwise. For me now? It’s an episode of “BuzzFeed Unsolved–Supernatural”. Pure 100% indulgent entertainment.

Because it’s a timed row, when the 30 minutes are over, I stop. No pressure to hit a certain speed or distance. No matter what, it ends up being a decent workout because I enjoy the exercise.

That leaves 15 minutes before I start work. Chemo left me with short hair that allows for a five-minute shower.

By the time my workday begins, I am completely refreshed and the day’s workout is done. I feel like I’ve been given a huge treat–almost like I’m cheating, but I know I’m not. That 30 minutes of physical activity tied with watching a fun video re-sets my attitude and I’m ready to take on the week.

I love Mondays!

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Can you create your own positive association with the toughest day of the week or anything else that causes you grief?