Re-writing Your Life

When I look back at the past decades, I feel exhaustion sweep over me.

Negative events may seem like they’re never-ending.

Cancer was not the only negative thing to come up in my life. There have been quite a few horrible things that have taken place, and at times I get overwhelmed by the thought of them.

This is not where, at my age, I thought I would be, and that’s disappointing.

But I realized that part of this disappointment is the lens through which I view things. Granted, I’ve had my share of misfortune, but when my life seems to be sinking into bleakness, it’s time to do something about it.

This calls for a change in perspective.

So I have undertaken a project. I am writing out the story of my life, but with a slightly different bent: when I come across a negative event, I pause and consider whether I can find something in it to be grateful for. I write about how I overcame it, rather than how bad it was, or how unfair and so unlike what others have had to deal with. I place emphasis on the outcome to avoid getting mired in anguish.

A difficult person in my life? I’ve learned that I’m not responsible for their happinesss, only for my own. A disastrous financial situation? I’ve found that what I perceived as a terrifying outcome can be overcome, and there is a light on the other end and a path by which to maneuver through it. A frightening health crisis? I now know I have met head-on the most daunting disease I ever feared that I would have and somehow made it through treatment.

Re-framing your personal history, when you’re ready to do so, can open you up to a glorious new view of how powerful you are and what amazing things you have achieved in your life.

I am still here. Re-framing the bad stuff is work in progress and it’s not always easy to let go of my familiar, well-worn, negative narrative, but, yes, I am still here.

I’ve discovered that my life is a story of perseverence. There have been numerous hardships and it’s true they’ve left deep scars, but I am aware of how they may twist my attitude, which has removed some of their negative punch. While I may look around and wonder why things have gone a certain way, I also see what I’ve learned and how I’ve matured.

If you want to give this a try yourself, there are a few things to keep in mind:
This is something for you to undertake about your life, not to be forced into by another person, nor push someone else into.

This is not about looking through rose-colored glasses or feeling that your concerns are not taken seriously, nor is this a squelching of negative emotions instead of dealing with them. It’s a step to the side for a different view. This doesn’t mean that those events were not disastrous or those who perpetrated bad things don’t deserve punishment.

You have a right to be upset. You are heard.

Re-framing your life in this way means that you give evidence to the exquisite being that you are, and to the power that you have within yourself. If you feel as though you’ve been chewed up and spat out, be gentle and start slowly.

When you’re ready, invite healing by releasing the burden of negativity and, pen in hand, allow yourself to reveal your strengths.

Tripping Over Gratitude for the Little Things

“There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle.”

Albert Einstein

A few days ago, I was hurrying across the room to open the door for a workman who was coming to fix holes in our walls resulting from a plumbing emergency.

In our haste to make space for the workman, we emptied the contents of a closet (where one of the holes was) into the middle of the room that I was crossing, and as I scurried, one of those wayward closet inhabitants tripped me. I crashed onto the floor, twisting the joint of my left big toe and falling onto my right arm.

And this was after icing it as often as I could stand it. I’m a rainbow!

I tried icing, but I could easily ice only one body part at a time as I tried to work at my computer, and since I needed to be able to walk, the foot got preferential treatment. As a result, while the bruise on my foot looked terrible, I could put pressure on it and as long as I limped, was able to get around.

My arm was another matter. For the remainder of the day, I was wondering whether I had fractured anything. Rotating my wrist was excruciating, bending my elbow any amount was painful and even just having the arm hang down hurt like crazy. I couldn’t grasp things with my right fingers. The only non-painful position was if I supported my right hand with my left.

Why am I telling you this?

Because I’d written some time back about how I found it difficult to find gratitude for “little things” because doing so felt forced.

Well, that morning, I ate those words.

I remember the good old days when I could put on a sweater without pain. The opposite side of the elbow is equally colorful.

Because when I think back now of how wonderful it was to be able to open a jar of pickles by myself, or even raise a fork to my mouth, I get hit between the eyes with the concept of finding gratitude for everything.

I found gratitude for the fact that I fell on the carpeted floor and not onto one of my son’s tools (that he had left lying around — I need to talk with that boy), that I am still allowed to work remotely and can do so from the comfort of my bedroom, that we have a car with automatic transmission (no shifting!), and that we had enough bags of frozen veggies that I could easily rotate through as they thawed and keep icing.

The next morning, I experienced a tsunami of gratitude for feeling better, getting more mobility and being able to avoid a visit to urgent care. That one trip knocked some sense into me and reminded me that it is not nearly as difficult to fill my cup with joy for things I’ve been regularly taking for granted.

So, that trip I took helped me discover that I don’t need to wait for gloriously grand things to occur in order to feel gratitude. Multiple reasons for a grateful attitude are all around me, every day.

Inviting Gratitude, Gently

Since this week is the Thanksgiving holiday in the US, it’s a good time to revisit the practice of gratitude. I wrote some time back about my nightly practice of writing down three things for which I was grateful. It was a lovely way to close the day on a positive note, as I would always be able to jot something down, even if my day was difficult.

Nightly gratitude journaling started feeling forced, certainly not the point of the practice.

However, after a number of weeks of this, I found it harder to be consistent. I would skip days, and often on the days that I could find something to write in my journal, the process would feel forced. The more I had to work to pull out little things to be grateful for, the less meaningful they became. Eventually, and regrettably, I stopped the nightly practice altogether.

Apparently, this is to be expected. Psychologist Sonja Lyubomirsky and colleagues from UC Riverside found that journaling once a week was more effective for boosting happiness than doing so more frequently. I can see why this would be. Everyone has stressful days that can wring any semblance of happiness out of us. Yes, while I found something to be grateful for any given day, if the overwhelming feeling was that of negativity then I was simply going through the motions of trying to find something–ANYthing–to write down. For me, this waters down the effectiveness of the exercise.

But writing on a weekly (or less) basis allows me to focus on the most powerful feelings of gratitude, and those have a stronger uplifting effect on me. They last longer and evoke a joy that daily journaling couldn’t.

In my life, there have been times that have felt very dark and heavy. In the moment, I have not always been able to find anything positive in them. Take, for example, cancer. Those weeks around my diagnosis were literally the most terrifying of my life, because I felt that this situation could actually cost me my life.

Quite frankly, if someone had told me then that I should stop and think of all the things I was grateful for, I might have told them to go to hell. The intensity of what was taking place right then–the shock and disbelief, the despair, the sheer fear–was too great to let in any light. For someone to have suggested that I should essentially “look on the bright side” would have felt like they were dismissing the reality of what is cancer.

For me, the process of letting gratitude come to me was far more effective than trying to snatch it out of darkness.

But as I passed through those worst weeks, I noticed things that bobbed up to the surface that I could be grateful for, so much so that at times I was overwhelmed with gratitude for how events had unfolded compared to how things could have been. I still had cancer and my life was still upended, but I felt a sense of grace about it all.

So if were to give one piece of humble advice to someone going through desperate times, it would be to remain open to the possibility that no matter how dark things may seem right now, when you finally have a chance to take a breath, you may see that glimmers of hopeful light have been shining through all along.

Rethinking “Essential”

Years ago, I went through earthquake disaster training at work. I was designated a point person for our floor of the building, and therefore given a sticker for my ID that read, “Essential Personnel”. A friend of mine, upon seeing this, quipped, “Does that mean they dig you out first?”

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Three months ago I would have never imagined getting a rush from finding a bag of flour tucked way back on a store shelf.

We now have a new measuring stick by which to judge what is “essential” to our lives. Clearly it’s not the trendy shoes or sporting events that we think we can’t live without. It’s the doctors and nurses that we take for granted, mail carriers and Amazon delivery people that we gripe about when our package is late, grocery store clerks and restaurant cashiers to whom we don’t give the time of day They are the blessings in our lives.

When we return to normalcy, take some of this back with you.

These days, leftovers are perfectly acceptable. The food long ago shoved into the back of the freezer transforms into a delicious dinner. And the unexpected shipment of hand sanitizer at the local warehouse store brings immeasurable joy.

How refreshing to truly appreciate these seemingly little things that we have, right now, in this moment.

Eventually, we’ll emerge on the other side of this. And I hope, in the midst of all the finger pointing and contentious debates, we pause and think about what has transpired. Consider how quickly our realities changed. Consider those who have lost jobs, lost loved ones, lost hope. Consider the people who have dedicated themselves and risked their lives to keep things moving, keep others healthy, keep you fed.

As we resume our busy lives and the din of the city increases again, I hope and pray that we don’t lose this appreciation. Respect and gratitude are not partisan concepts, so we should stop acting as if they are.

I can assure you, I will never take cleaning wipes for granted again.

Gratitude, Every Night

One of the most intense emotions that I felt after being diagnosed with cancer was anger. I felt betrayed by my body and the medical community. I’d done everything that I had been told I was supposed to do to bring my breast cancer risk down to as close to zero as I could, and still cancer found me.

In reality, until we discover what causes cancer, we can never eliminate our risk of the disease. Of course, I wasn’t thinking like that. I had been completely blindsighted (as, I’ve learned, so many are) and was furious about it.

So when I read a suggestion about finding things to be grateful for, I scoffed at it. Until I actually thought about what I could potentially be grateful for.

The result was overwhelming. In the midst of what had gone wrong, there was so much that had gone right! So many things that could have been worse, so many lucky coincidences that improved my situation. So much to be grateful for! Where my way had been obstructed by brambles and thorns, now lay a welcoming path.

I sat slack-jawed, humbled by my many blessings, as if they had been planned out to benefit me. If I had to develop invasive breast cancer, then so many things were working together to make my journey easier.

I kept a gratitude list and continually added to it. Invariably when I sat down to write my mood would gently soften. Even so, I struggled. There was a perpetual tug of war between hot emotions and the soothing breeze of gratitude. Many times the heat would overtake me.

Gratitude returns the beauty that anger steals away.

Time has passed and distance offers perspective, and while I am not perfect in making space for all the frustration associated with repercussions of my treatment, I understand the importance of working on it.

Every night, therefore, right before bed, I make a list of five things that I am grateful for. They don’t need to be big and they don’t even need to have taken place that day (although often they have). If they’ve evoked gratitude, they qualify.

I can always find at least five things and that is a heartening thought.

Settling into bed, thoughts of wonderful things fill my head and put a smile on my face, shepherding me to sleep. There is no better way to end the day.

A Year and a 1/2 with Tamoxifen: Collateral Damage

For those unfamiliar with the drug tamoxifen, its purpose is to block estradiol receptors in an effort to decrease the chances of developing hormone receptor positive breast cancer. My own tumor had been estrogen and progesterone receptor positive, so tamoxifen is pretty much standard fare for women in my situation.

The trick is, however, to make sure women keep taking the medication, and the side effects may make that a challenge. The current recommendation for pre-menopausal women with hormone receptor positive cancer is ten years of tamoxifen. When I posted after a year of taking tamoxifen, I was experiencing minor side effects but had managed to avoid the worst hot flashes and night sweats that many women complain of. And even the side effects I had I couldn’t completely pin on the drug.

After a year and a half of tamoxifen, the landscape has changed. My estradiol level, which was 36 pg/mL when I started in November 2017, has dropped to 22 pg/mL. I’m still not having a significant problem with body temperature regulation, although this may change with the summer months.

There are, however, other distressing issues that are becoming increasingly problematic:

1. Memory lapses. I’ve written about this in a number of other posts, but it deserves mention again because it’s not getting any better. I struggle with distractability and loss of focus, which compromise my ability to do my current job. There are details that I simply miss, and I have a hard time juggling things in my head. Yes, I write everything down and follow my own advice, but there are days that I want to give up and go home.

Bottom line, even with workarounds, my concentration makes me ineffective at times. That alone could be a deciding factor in how long I will last on this medication, but it’s not the only one.

2. Fatigue. This has become more noticeable and is affecting my workouts. I feel like I’m losing ground on my fitness. While I’m no stranger to working out even when I don’t feel like it, there are days that I feel beat before I begin, and like I’ve been run over by a truck by the time I’m done. Exercise is such a crucial part of recovery and good health — and a very important part of my life — that it seems ridiculous that my treatment should be getting in the way of it!

Detachment from affection feels lonely and isolating.

3. Loss of libido and emotional attachment. This would be easier to take if I were single and living alone, but dealing with this side effect in the context of a relationship is getting progressively more difficult. It is not simply romantic desire that has dwindled; feelings of affection for my husband and children have dulled. I know I love them and feel a strong sense of responsibility for them, but there’s a numbness where there used to be warm emotions. It breaks my heart because I don’t want to feel this way.

4. Depression/mood swings. On the plus side, I know what’s going on and am actively working with my counselor on dealing with these fluctuations, but these are side effects of the drug, so as long as I’m taking it, I feel like I’m trying to bail water out of a sinking boat with a spoon.

5. Argh, again with the hair! After regrowing my hair following chemo, it has been thinning from tamoxifen. This may seem insignificant in the grand scheme of things, but if you’ve ever lost your hair to cancer treatment, you know that it can be a emotional experience. Getting your hair back is a big deal, but thinning hair brings back a sense of helplessness and lack of control.

Notice that the effects above are not readily apparent — even the thinning hair might not be as noticeable to an observer as it is to me. It’s easier to understand visible health-related consequences, but we as a society have a hard time getting our head around (or expressing concern for) the importance and impact that emotional factors have on quality of life. You can’t see my concentration difficulties or depressive mood or grief over numbed affection, but they affect me as strongly as do any physical symptoms.

I’m not forgetting how lucky I am.

This is a good place to stop and mention gratitude. The fact that I write this post as a former cancer patient on a maintenance drug to help keep my cancer from re-occurring…that is a privilege. My good fortune is not lost on me, and it is something I think about every single day. We have come a long way in treating my type of breast cancer and I am the beneficiary of those advances.

But there is also an expectation that now that chemo and radiation are done and my scans are clean, I should be “back to normal”. I would like nothing more than that, but I’m not there.

This brings me to a deal I made with myself: I promise to do my utmost to last through five years of tamoxifen. However, years 6-10 remain to be seen. At some point, the scales will tip and quality of life will win out over whatever purported percentage of increased survivorship the full decade of the drug can offer me. This offers me some strength to push on and focus on the present, doing the best I can with what I have.

Passing Days One Pill at a Time

I have beside my bed a 7-day pillbox. Since I avoid taking pills whenever possible, opting for alternatives to medication, there is only one lonely but mandatory pill in each little box corresponding to the day of the week.

That’s tamoxifen, a final remnant of breast cancer treatment that I’ll be taking for years to come.

I observe the passage of time by the disappearance of the daily pills. They mark the days that I work and the days that I don’t (weekends and Wednesdays). Sunday mornings the pillbox is full. The work week looms before us bringing early mornings and sleepy heads. Wednesday provides a brief respite with an extra hour of sleep and a day crammed with personal errands at home rather than office work. When Thursday rolls around and I return to my job, only the Friday and Saturday pills are left until it’s time to refill the box again.

Days melt into weeks, weeks into months. Make them count.

The weeks seem to go by more quickly as I get older. Time feels slippery and days fuzz into the background. Weeks pass into months as pills are consumed. I’m unsettled by the possibility that when my decade of tamoxifen ends, I’ll realize that I spent ten years waiting the pills to finish and missing what was going on in the moment. It frightens me into wanting to distinguish this week’s row of pills from the next, to make next week different from the last.

I pause as I plop a fresh row of pills into their designated boxes. Could I be kinder to those around me? React more calmly? Sleep better? Support the needs of others more? View my shortfalls with compassion?

Every morning I am able to get out of bed and place my feet flat on the Earth. That is something to be very grateful for, no matter how difficult my week. I represent the fortunate ones who have been given the opportunity to remain alive and present in “now” and appreciate every precious day more than the one before.

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Unbeknownst to me, the friend whom I wrote about in “Waiting To Say Goodbye” had already passed by the time I posted last Saturday. The end came very rapidly but peacefully Friday at sundown, allowing just enough time to enable her to be surrounded by everyone in her immediate family.

This is sudden and painful. She and I had spent a good chunk of 2017 sharing breast cancer treatment experiences. We knew that there were no guarantees with cancer, but we both had hope. Neither one of us imagined that this would be one of the outcomes.

After she knew her cancer had spread, she continued living as she always had, toughing through the hard parts. She didn’t want people asking her how she was feeling, she wanted to keep on going until she couldn’t go anymore, and that’s what she did. Her decline was so swift that she had felt well enough to do everything normally until the last few days before her passing. That was a beautiful gift that she genuinely deserved.

Understanding that nothing in this life is permanent doesn’t make her death any easier to accept, although it does underscore how things change no matter how desperately we cling to them. I strive to practice non-attachment, but who am I kidding? I am too attached to people and expectations. Yes, it does cause suffering, but right now suffering is just what I do.

Eventually I may transcend this. Eventually.

I end this post with a quote from Claire Wineland, the 21-year-old cystic fibrosis activist who passed away from complications from lung transplant surgery on September 2, 2018. She had spent most of her days knowing that her time on this Earth was short and urged people to live life to the fullest: “Go enjoy it, ’cause there are people fighting like hell for it.”

Survivor’s Guilt and “Noel”

After posting about missing the “downtime” of chemotherapy, I need to talk about how much of a privilege it is to be here writing that. I get to reminisce about the positives of being allowed to have no other job but to rest and recover.

Sometimes I complain about chemo brain, sometimes I wonder why *I* got cancer when those who take worse care of themselves seem to get off scott-free. I’ve left the initial fears about death behind me. Yes, my cancer may come back, but right now I’m in a good place with a good prognosis. My reality is that I will be able to enjoy this holiday season and focus on being with family, feeling physically healthy and “normal” again.

I have friends who are currently going through treatment. And you can bet that they would give anything to not have to be there, in the same way that I would have when it was happening to me. Some of my friends may eventually get to the place that I am now; for others, this may be the last stage of their lives.

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“All we have to decide is what to do with the time that is given us.”   ~Gandalf, The Return of the King

This is not lost on me. In fact, it’s something that I think about a lot. As we approach Thanksgiving, I am very grateful that I’m doing well, not even a full year after completing my last treatment. In addition to my gratitude, however, I carry a lot of guilt. One in eight women will be diagnosed with breast cancer during their lifetime. And many will be diagnosed with other cancers or other life-threatening illnesses. At any given time, there are so many of us going through the shock, fear and psychological and physical suffering of various treatments. How can I complain about my lingering discomforts when I have the pleasure of being here and experiencing them?

There are many things that could have been worse for me. But they weren’t. The more time that passes, the less I worry about why I got cancer and wonder more why I am one of the fortunate ones. As difficult as it is to put my cancer experience behind me and move on as if nothing happened, it’s even harder to do so knowing that I am leaving behind others who will not make it.

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I’ve met a lot of fellow cancer patients in the infusion room, some with metastatic cancer. There’s one in particular I cannot forget. I’ll call her “Noel” since I met her heading into the 2017 holiday season and her mother privately told me that she wasn’t expected to survive past Christmas. Noel was a friendly and sweet woman with aggressive breast cancer. We chatted about hair regrowth as mine was just barely beginning to come back, and she shared with me Facebook photos of what her hair looked like after her first breast cancer treatments were completed. Eighteen months later, the cancer had returned with a vengeance. Noel was divorced with two pre-adolescent daughters. Her mother told me that as Noel’s situation deteriorated, it also devastated her daughters, who were witnesses to their mother’s decline. Luckily, their father was very supportive and provided as much care and love as he could.

I was heartbroken as I left the infusion room that day. I don’t know ultimately what happened to Noel, although I expect the worst. Cancer is a horrible beast that ravages the patient, but also takes the family down with it. I think, “What a blessing to not have to go through that.” But that thought catches on my conscience. I’m still here; do I deserve to be?

Recounting this story a year later, that guilt weighs even heavier now. I feel an obligation to make good use of the time remaining.

I Didn’t Expect THAT: Surgical Glue

This was one of the nicest surprises that I received throughout all of treatment.

Growing up, I always associated surgery with umpteen stitches that required removal. Then again, I also associated cancer with certain death. Luckily, neither one is a definite anymore. Since I’d never needed major surgery before, I had no idea that surgical glue is a thing. And what a thing it is! It would have probably been different if I’d had a mastectomy, but with a simple lumpectomy to remove a not-so-big tumor…all the stitches were dissolvable and internal.

Armpit_glue
A view of my armpit after my surgery. The top scar is lymph node excision, the bottom is lumpectomy. The shiny stuff is glue. Yay, no bandages needed and no stitches to remove!

On the outside, there was glue. It was plastic-y, kind of like if someone had taken nail polish and drawn a stripe across the incision, only it was more pliable. As my incisions healed, the glue flaked off. There were no dressings to change, no bandages necessary at all. Not having external stitches was a beautiful gift from my surgeon.

If you’ve read my other posts, you’ll know that psychologically I didn’t handle the concept of cancer well. It took me on an anxiety-fueled roller-coaster ride, as I went from a healthy, active woman to a cancer patient. I have a stubborn expectation of normality in my life, and over the years I’ve put a lot of work into maintaining it. Cancer blew that to shreds. And in a funny way, that little strip of glue brought a bit of “normal” back to me.

Sometimes, it’s the little things…