Posts Tagged ‘fatigue’

Not Normal

09.30.2012

Institutions in this world inadvertently carve out an imagined life of the people they serve. It’s like the negative space in a painting or photograph: what isn’t there can communicate as loudly as what actually is there.

In my non-blogging life, I am an educator. I started my career as a public high school teacher. I quickly saw how events like Back-to-School Night assumed parents had lives that permitted a couple of free hours on a weekday evening, with the transportation, childcare, and schedule that would allow for this to make sense.

I am used to institutions and society making false assumptions about me. Some of my very early awkward moments involved being in the grocery store and having well-meaning adults ask me what Santa was going to bring me for Christmas. (I am Jewish and have never celebrated Christmas.)

This is not an indictment of society. We have to have some baseline assumptions about how the world works in order to function. To do otherwise can be paralyzing as you try to account for every circumstance. When you are a part of a group that represents less than 2% of the population, your experience may not factor in for many folks.

I find myself in a new invisible minority as I am dealing with recovery, one whose reality is not part of the imagined world of many institutions I encounter.

To play on the tagline of my blog, I often feel like hell, but I don’t usually look like it.

It is hard for people to imagine the careful strategizing that goes into allocating my very finite, very uncertain time and energy. I have anywhere from 8 to 12 good hours a day, and in that, I must attend to my health, my family, my job, and hopefully, some of my important relationships.

It’s the usual working parent juggling act, only performed on a tightrope.

As a result, I have learned to say no to things. I have become extremely discriminating about commitments, making sure they serve important goals before agreeing to them.

My work folks mostly seem to understand. My family mostly seems to understand.

The place I have had the hardest time is in parent communities.

Even before I was done with treatment, I was approached by a PTA president asking me to volunteer for something. I responded quite directly (perhaps curtly — I don’t remember — thank you, chemobrain), explaining that this would not be possible right now and most likely not for some time.

The requests do not end, and for the most part, I have gotten over the guilt of having to beg off.

But then today, I ended up in a parent meeting that was really not a good use of my time. I had originally intended to forgo it –– it was a 3 hour meeting –– but had been told directly about its importance. So I skipped my Sunday morning exercise, planned to delay my errands, and made room in my calendar to attend, not entirely certain how everything else was going to get done.

As the content of the meeting and its irrelevance to me became apparent, I felt myself fuming. I tried hard to talk myself down: They have no idea of the energy calculus that goes into every choice. This might actually have a lot of good if you had the time and energy for it.

The best I could do initially to contain the belligerence burbling inside of me was to avoid eye contact, look at my phone, and just kind of shut down. I quickly realized that whatever good this conversation had to offer would be lost on me.

At the most convenient moment, I made my exit.

On the way out, I caught up with one of the organizers. I tried hard to be a mature grown up, but all my buttons about recovery and struggling to keep up, let alone add in a 3 hour parent meeting, had been pushed hard.

With perhaps a little too much desperation, I explained my situation. I explained that my schedule is a zero sum game, that there are no extra hours to be squeezed out of a day by sacrificing sleep. The time I have is the time I have, and its often less than I think. I explained that, in the future, I need to get a full agenda so I can come for the most relevant parts.

I am not upset at the organizers. They did not mean to put me out, and were only kind and compassionate once I explained my limitations. I am not upset at the other parents. I am coming to believe that, no matter how empathetic people are, our imperfect humanity limits our ability to fully imagine other people’s circumstances. In the end, this organization assumes families have healthy parents whose Sunday mornings are free.

And, as of now, that is not my case.

 

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Posted in Survivorship | 10 Comments »

The Sacrifice We Make

08.25.2012

When I was a young girl, I liked to read Grimm’s fairy tales. Not the cleaned up versions, but the old school ones with cruel villains and extra spooky plots.

I had seen enough ugliness in the world to suspect that the saccharine, popularized retellings were inaccurate in their representation of the world, so I sought out dark stories that felt more honest.

As I have been processing all I have gone through, I keep thinking back to The Seven Ravens. In it, a girl’s seven brothers get bewitched and turned into ravens. She goes on a quest to find them, and learns they are locked inside a glass mountain. The only way for her to free them is to cut off her finger and put it in the keyhole. She does so without hesitation and frees her brothers, who resume their human form.

 

The moment where she cuts off her finger always caught my breath. It was one line in a very brief story, but I meditated on it as a child.

What would I have done in that situation? How badly would it hurt to cut off your own finger? What went through her mind as she brought the knife onto her own flesh? How did she have the strength to actually push it through all the way? Does she realize that she will never have that finger again? Will her brothers ever understand what she did for them?

The Seven Ravens and the questions it forced me to ponder are not unlike what I had to face as a cancer patient. I willingly chose terrible suffering, a cruel regimen of pain, as a sacrifice I made to have more life.

Being a participant in my own pain is not something that came easily or that I am getting over. As my friend Xeni has entered the middle part of her course of daily radiation, I am reminded of this unnerving aspect of the treatment.

Climbing on the table. Day after day, even as your skin gets sore and maybe even blisters. Even as you feel the energy draining from your body. Like the ancients who sacrificed animals to unknown gods, we offer ourselves up to the unseen cells we seek to placate.

All this is done on our own accord. Unlike chemo, nobody typically escorts you. The sessions are brief and frequent. You climb on the table yourself, get into position. Unlike surgery, there is no heavenly moment of Versed bliss before you lose consciousness and it is all in the doctors’ hands. Your volition, your showing up, your stillness and cooperation is what makes it all work.

What prepares us for this? How do we make sense of what comes next?

As the news of NED sinks in, as I approach my three year milestone, I vacillate between anger at what has been lost and amazement that I am still alive.

My arm catches fire with lymphedema and nerve damage.  I am in anger again.

My brain gets clicking, my energy sustains me through a day, and I connect to what I love most in life. I feel immense gratitude.

I thought the roller coaster ended with treatment. But I now see recovery has its own ups and downs. We are reminded by our own bodies, by our friends’ stories and suffering, of all that we have endured.

The challenge, as I see it, is to make the most of the moments of joy. To seek them out.

That may be the only way to make good on this terrible sacrifice.

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Posted in Survivorship, Treatment | 6 Comments »

Marking Time

07.26.2012

With no big medical events on the calendar, I am, in many ways, more normal than I have been in almost three years.

But yet I am not.

I don’t need to rehash the combination of fatigue, lymphedema, fogginess, and trauma I have been left to sort through. I’ve covered that mess already.

If I am not my Old Self and I am not a Cancer Patient, who am I?

For instance, I like to think of myself as reliable. Right now I am not.

Will I ever be again?

Much of recovery involves managing expectations, both my own and other people’s –– and on an uncertain timeline.

It’s not easy. Sometimes I have focus and energy. Sometimes I don’t. Sometimes I have pain and exhaustion. Sometimes I don’t.

I have not found any predictable rhythm to it.

I have been trying to make room for this uncertainty: don’t overcommit, stay forgiving of my limitations. Let myself rest, bow out. Listen to my body.

Stay realistic, despite the ways I am champing at the bit to get back to that magical land of How Things Were.

Take myself off of a set timeline, let things unfold as they may. People call it a New Normal, but there is nothing normal about it.

If my wellness were the only uncertainty, maybe I could manage to make space in my life for this to work itself out.

But there is that other shadow in my life, the fear of recurrence.

With odds somewhere between 20 and 30%, most breast cancer patients cannot ignore that reality.

It’s a haunting and existentially impossible situation:

What if I give myself time, stay gentle in my expectations, and I get pulled up short again?

How do I let Time Heal All Wounds when I am Racing Against Time? When life may pull another fast one on me and the clock may abruptly stop?

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Posted in Survivorship, Wellness | 17 Comments »

Equilibrium

06.22.2012

I have not disappeared, dear blog readers. Summer started around here, right after my last post, complete with graduations, barbecues, summer camps, fireflies, and mosquitoes.

Now that my last surgery is over, I have the goal of finding new equilibrium in my life. Under the best of circumstances, managing a career, family, friendships, marriage, and health is a big undertaking. When 2 years, 7 months, and 11 days of cancer treatments get thrown into the mix, it becomes impossible. So much has gone to the wayside.

My pact with myself is to start picking up the pieces of all that has been cast aside.

My two biggest challenges? Limited energy and impatience.

I still get worn out by the end of the day, sometimes to the point where I have to climb in bed. My to-do list is long, and it includes giving more of myself to the people I love.

I have tried to meet this challenge by managing my energy. Everything and everyone is now sorted into two categories: energy giving and energy draining. Things in the latter category are ruthlessly put aside. Children, are of course, a bit of both, but I am their mother and I love them. To give them more of me, I am cutting back on some   hours at work while they are out of school. I am glad to have this as an option, even though it may make the financial equilibrium a more distant reality. The soul satisfaction I feel when I bake a pie with my daughter, take my kids to the park, or just hang out and snuggle lets me know that I am on the right track.

It’s hard because part of me is used to my take-no-prisoners approach to catching up when I fall behind.

But I am so behind. And when I hit the wall, it is made unforgiving, solid brick.

I know I won’t knock out all the things I wish to do this summer, but if I can give back to the people I love, I think I will be happier.

 

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Posted in Survivorship, Wellness | 14 Comments »

Fatigue, the Sequel

02.02.2012

I had my 6 month oncology check up yesterday. I am happy to report that all is well.

My husband came with me because we were feeling very unnerved by the  intensity of the fatigue I have been dealing with the past few weeks.
My risk for recurrence is 20%, and the most likely time for it to  happen is 2-3 years after diagnosis, which is where I am right now.

My blood levels were all normal, but the doctor believes that it comes  from trouble metabolizing the anesthesia from my recent surgeries.
Even perfectly healthy people have setbacks with anesthesia. It takes 6 months to leave the body. Because of the damage from chemo, my liver
is likely only functioning at about 80% of normal, making any metabolic process more challenging.

Cancer: the gift that keeps on sucking.

Anyway, the doctor gave me low dose Ritalin to help me through this time. The fatigue has become really debilitating. I can take a 3 hour
nap, feel fine for an hour, and then feel tired again. It’s undermined any attempts to exercise consistently. My husband has had to pick up more
than the usual slack.

I have 3 kids and a big job, so I know tired and even exhausted. This  fatigue is more like a light being dimmed from the inside. The bottom
is deeper than tired or exhausted can explain. I took a wee dose of Ritalin this morning (half of what the doctor normally prescribes,
given my sensitivity), and I already feel like the lights have been turned back up.

The plan is to do this transitionally until I get some more mojo back.

Will keep you posted.

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Posted in Survivorship, Wellness | 7 Comments »