Cancer cannot take this away

Image credit: pixelsaway / 123RF Stock Photo Used with permission.

Image credit: pixelsaway / 123RF Stock Photo
Used with permission.

Yesterday I was in enough pain to take the stronger medication for it. I was also sad and upset about several unrelated bits of bad news that I’ve received recently. I was feeling alone and needy and, truth be told, more than a little sorry for myself. I spent most of the day in bed, feeling drugged and loopy and groggy and dozing off and on, feeling needy and weepy when I was awake. It was not a good day.

Today I woke up and I’m in enough pain to take the stronger medication for it. I am still sad and upset by the bad news. I am still alone and I still need help with simple tasks. But I am not feeling needy, I am up at the computer writing this post, and I am having a friendly chat with my home help, L, who is here working her magic.

So what is the difference between yesterday and today? Yes, my home help L the wonder-worker is here, but the truth is that hours before her arrival I was up and showered and dressed in clean clothes and sitting at the computer doing my sorely neglected email. What changed?

The pain didn’t change. The fatigue didn’t change. The cancer didn’t go away. The sleep issues were not resolved. Why am I up and smiling today? I think it’s the A-word: attitude. Before I went to sleep last night I made a decision to change my attitude.

It’s as simple as it sounds and as difficult as it sounds. I wrote a short update in a Facebook cancer support group to which I belong, and I was complaining about everything from bone tumor pain to mosquito bites. I knew that I would get lots of “poor you!” and hugs and supportive comments and a joke or two in response. But by the end of the my update I found myself writing:

The best thing on earth is that tomorrow is a new day! And also I was able to get up and make some food and drink. And my home help is coming tomorrow. So I should just get off the pity pot and make a gratitude list. 

Damn. I hate it when I talk myself out of my moods! 

I somehow allowed myself to change the focus, to look in a different direction, to change my attitude. Sometimes that’s all it takes.

When I was an undergraduate (a long, long time ago in a galaxy far, far away) I was profoundly impressed by Victor Frankl’s Man’s Search for Meaning. This is one of the books that changed my life. In particular, this: “Everything can be taken from a man but one thing: the last of the human freedoms—to choose one’s attitude in any given set of circumstances, to choose one’s own way.” 

That blew me away forty-some odd years ago and it still does. No matter what cancer takes away from me. No matter what bad news I receive, no matter what problems I face, I have the freedom to choose how I relate to it. This doesn’t mean mindlessly smiling through a crap storm (remember – not recognizing reality is insane), but it means that I can choose to collapse under it, to fight it, to accept it, to try to change the circumstances, to move out from under it. I can choose to identify myself with the crap storm or to remember that it is separate from me, it is not me. As a religious woman, I can choose to put my faith in the hands of the Creator, remembering that in my religious tradition God helps those who help themselves.

Whatever I choose–even if I choose through inaction–it is my choice. That is the power that is left to me, “the last of the human freedoms”, and when I choose to exercise it I reclaim some of my personhood. My personhood, the choice of my attitude: cancer cannot take that away from me.

Don’t forget: Anyone who is affected by metastatic breast cancer is invited to submit a post for me to publish during October. If you are interested, please contact me at the email in the sidebar or tell me in the comments. We want to hear your voice!

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From Denial to Acceptance?

acceptance is keySlowly but surely, cancer is chipping away at my dignity, my autonomy, my self-image.

Last week I agreed to my oncologist’s suggestion of treating my apparent depression and anxiety disorders as a quality of life issue, and accepted my GP’s prescription of an SNRI. I know that objectively that was a good decision. I know that this is one way of taking care of myself and being sure that my needs are met.

Nevertheless, it feels like humiliation. I wrote about that recently, so I won’t repeat myself here.

Back to pain management, a quality of life issue par excellence. For a year or so now I’ve been white-knuckling, trying to avoid taking the narcotic pain relievers and when I eventually do take them, I’ve been taking minuscule doses that have little or no therapeutic effect. It’s not like I don’t know that; I’m reasonably conversant with these dosages.

As I’ve written before (as in this post from about nine months ago), my issues with narcotics are dual. On the one hand, I hate the way they make me feel. I hate that sleepy-dopey feeling, the impaired judgment, the excessive emotionalism, the lack of impulse control, the inability to do things that have to be done. I live alone. I have a house to maintain. After requiring my medical retirement, my employer was kind enough to give me alternative employment that I can do at home when I’m up to it. That has to get done if I want to keep getting a paycheck.

The other issue with narcotics is that I’m mildly allergic to them. My whole body starts itching, inside and out, and so I have to take an antihistamine at the same time as the narcotic. Antihistamines feel yucky, too.

So the decision for me involves balancing two elements. Which will be worse at any given moment: the narcotic-antihistamine impairment and discomfort or the unmanaged pain?

Last night I realized that (yet again) I’ve been an idiot, that my pride and self-will, my “machisma” has been causing me to make really bad decisions. I took a ridiculously tiny dose of Percoset last night and not surprisingly was up pretty much the whole night in pain.

So, a bit more of my self-image crumbled away last night. My image of myself as strong in body, mind and will, as a person who copes, a person who is in control… *poof*. I need to find a new base to stand on, and I’m going to try to start thinking of myself as a person who does whatever is necessary to take care of herself, even when that means adjusting long-held ideas and values.

Reality changes. Fundamental human values, in my opinion, do not change, but other kinds of ideas do. It is time for me to adjust the way I gauge my personal strength. It is time for me to step out of these last tattered remnants of denial and squarely face the reality of where I am with this disease.

I have metastatic breast cancer. I will never be healthy again. My pain and disability will increase. That is reality plain and simple, and as I wrote in a post about another issue:

Accepting an unpleasant or bad situation – war or abuse or cancer, for instance – doesn’t mean that I endorse it or like it. It just means that I have looked at reality and noticed that it is real. Not accepting reality is fairly insane. I can’t even work to change something until I have noticed and accepted that it is real.

At the same time, I am still the same person I was before diagnosis. I am still bright, I still have talents, I still have the ability to love and be loved, the ability to work effectively. The disease has not yet taken everything from me, and I still have the ability to cook, to watch movies, to read or listen to books, to be in touch with friends, to tell abysmal jokes, to help others and be helped by them. I can be grateful for these things while still acknowledging the devastation my disease has wrought.

It’s not going to be easy, but I’m pretty sure that this what is the landscape of the next part of my journey will look like.

The humiliation of fatigue

534075_333017693444653_190895940_nOne of the neighbors around our central courtyard made some remarks the other day that caused me to feel terribly helpless and humiliated. He mentioned how he had heard how active I used to be, how well I kept my house and garden, how much work I did for the marginalized and weaker people in the community. “What happened,” he asked. “It’s not good for you to be so inactive. Just do a little at a time and you’ll get your strength back.”

My neighbor knows I have terminal cancer. He knows that my world has become very small. He knows how sick I am… but he doesn’t get it. He is one of the many people who see cancer fatigue but register it as laziness or depression or “playing the cancer card”.

Don’t they know how much I want to be active again?

Today I changed the linens on my bed. It took an hour and I had to take a rest before doing the last pillow because I was not only exhausted, but out of breath. This is not fun, people. I love a clean house, a spotlessly clean house. I can’t have it now because I have to depend on other people to do the heavy work for me – and most of it counts as heavy work for me now. For the pittance I can afford to pay, I cannot require that they clean to my standards, just to “regular clean house” standards.

Not only can I not expect to be completely pain free for the rest of my life in the physical sense, I can expect to have a certain degree of emotional pain, too. I’ve written at length about how I deal with feelings that I don’t like. It works. But sometimes I wish with every fiber of my being that I didn’t have to deal with all this.

“Why me,” cried the woman, in honest desperation.

“Why not,” came the reply.

I do my best not to spend my limited energy reserves on nonsense, not to waste time howling at the moon–except when a good old-fashioned howl is what I need to free myself so I can get up and keep going. Today is a howling at the moon kind of day.

And so, dear friend across the courtyard, this is what I want you to know. Fatigue is real, even though you cannot see its stigmata on my skin. I am frustrated enough that I cannot do everything I’d like to do, and humiliated enough at the state of my house and garden without you pointing it out to me. I am doing everything I can possibly do, and probably a little bit more than that.

Moreover, I do not have to justify myself to you any more than you have to explain  yourself to me. I know that you mean well and would never have intentionally hurt my feelings. But please just keep your mouth shut and your suggestions to yourself. Give thanks to God that you don’t know or completely understand what I am experiencing, and continue to be the friendly neighbor you have always been, respecting our mutual boundaries.

Thank you.

Angry

ExplosionI’m angry. I have every reason to be angry, and I am angry. I know all about anger as negative energy. I know all about how nice, well-educated religious ladies aren’t supposed to be angry. I know all about ways to reframe the situation, ways to channel anger into positive pursuits. I wasn’t a psych professional for nothing.

But you know what? I don’t care. I am angry and I have every reason to be angry. I am angry and I going to keep saying that and acknowledging that part of my reality until I don’t need to any more.

I’ve talked about my idea of acceptance a lot in this blog, notably here. As I say again and again:

Accepting an unpleasant or bad situation – war or abuse or cancer, for instance – doesn’t mean that I endorse it or like it. It just means that I have looked at reality and noticed that it is real. Not accepting reality is fairly insane. 

Right now anger is part of my reality. Feelings are not the boss of me, as I also like to say. “My fundamental happiness takes nothing away from being sad or angry at a person or a situation, and the sadness or anger do not destroy the fundamental contentment,” as I wrote there. But feelings are real and they are part of the greater reality.

Okay. Now that we have all that out of the way – I’m angry! I’m furious! I’m enraged! No one in my family has had cancer – until me. Then I get cancer (how? who knows?) and I end up being one of the 30%. Lucky puppy me.

It used to be that when I got angry I’d go for a long walk or spend an hour on my exercise bike. I can’t do that any more. I can’t pound pillows or throw stuffed animals against the wall. But I can write. I can and do write. Homo verbalis – I use my words.

I am angry at cancer.

I am angry at awareness campaigns that don’t donate to research.

I am angry at people who call breast cancer “the good cancer”.

I am angry at my doctors for not having the tools to help me better.

I am angry at my body for being so weak and tired.

I am angry at the pain medicine that clouds my thought.

I am angry at people who stay away from me because terminal disease scares them.

I am angry, angry angry!

And then I come out the other side of the anger and I weep. I sob. I don’t know how to do this. I don’t know how to get ready to say goodbye. I cry because I don’t know how much longer I have, and I cry because I don’t know if it would be worse for that to be a longer or a shorter time.

I cry and I become calmer. I may even be able to sleep tonight.

I’m not ready to die!

Hanging onI’ve written a few posts about acceptance. I sure hope I wasn’t too smug because warmed-up words are not a very tasty meal.

It hit me suddenly today – I’ll be fifty-eight in two days. Will I live to see my next birthday? There is a good chance that I will not. The odds that I’ll reach the age of sixty are minuscule.

I’m crying while I write this. I’m not ready to die yet. I wrote about it in my recent post Saying Goodbye Without Leaving:

The thing is, I am not ready to die. I love being alive, even with all the restrictions that are now my lot. I don’t know how to deal with this and it often makes me cry.

[…]

I don’t like that I am going to die, and I am not ready to die, but I know that I am going to die. I can only hope and pray that as my death approaches and becomes more immediate (unmediated by time) that I will be able to live each day with faith and courage, grace and humor to the last.

I want to write, don’t know what to write. The last couple of days, I’ve been sort of frantically active, within my limitations. This is a warning sign for me, a cue that I am avoiding difficult emotions. Wisely or unwisely, I looked within and saw…

I’m not sure what I saw. Not darkness – my fundamental happiness has not departed. Not despair – my God will not desert me. Not loneliness – I am fortunate in being surrounded by loving friends. So what is it?

Regrets? No, the only thing I regret in life is an unhealed relationship with a family member. I know that I’ve done all I can in that regard, so I quietly leave it in the hands of my relative and God. As I wrote a couple of weeks ago in Bucket List, I’ve had a good life.

I’m beginning to ask myself how much of this sadness is a control issue. I am a controlling person. I pay attention to detail and like to have my hand on everything going. As I get closer to death, my body compels me to start letting go of more and more. For example, my home isn’t as clean as I’d like (even though the Young Man Who Helps does very good work). I used to be very house proud; it’s hard to let go of this.

My house is just a symbol, of course. It’s not the grubby back door handle that is bothering me. It’s the letting go, letting go, the continuous letting go of life.

I’m not ready yet. How do you get ready to die when life is so good?

Saying Goodbye Without Leaving

Back View of a Woman Walking with Bare Feet; A Bundle in a Plaid on her Back. Turner, 1801. Click on the image to go to the page at tate.org.uk.

I read Goodbye Without Leaving,  a novel by the late Laurie Colwin, almost twenty years ago. The book is funny and moving and very representative of its time, but what has stayed with me all these years is its epigraph:

Americans leave without saying goodbye,
Refugees say goodbye without leaving.

Refugees say goodbye without leaving. In that sense, living with metastatic breast cancer is like being a refugee from life. It feels like I’ve been saying goodbye to friends, to places, to activities, to life itself for years now. Unlike the refugee who carries home in her mind and heart even though she is physically elsewhere, I am still physically in the country called life but in my mind and heart I am in a continuous process of leaving it.

This is not to say that I am depressed. I am not. (I even have a psychiatrist’s opinion to that effect.) But I am living in the constant knowledge that I will die sooner rather than later, that I am on “borrowed time”. (I don’t care for that phrase “borrowed time” because it contradicts my worldview, but it is convenient shorthand.)

It is now almost nine years since my initial diagnosis, which was at Stage III. The metastasis was diagnosed fairly quickly thereafter, but it was confined to my spine and was stable for a very long time. Since it has begun to spread, though it remains in the skeletal system, I have become more aware of the very real death sentence that is metastatic breast cancer. This has been brought home to me even more by the apparently permanent blow to my immune system (neutropenia) since my most recent round of chemotherapy, over a year ago. I have had to make major modifications to my life style.

The thing is, I am not ready to die. I love being alive, even with all the restrictions that are now my lot. I don’t know how to deal with this and it often makes me cry.

Most people by now are familiar with the Kubler-Ross “five stages” model: denial, anger, bargaining, depression, acceptance. Although Kubler-Ross said that people do not necessarily go through the stages in this order and that not everyone experiences all five of them, people generally relate to them as a kind of preparation course that everyone completes in good order.

Even though I know better, I have fallen into the trap of thinking that way, but again and again I have proved to myself that not only is this not a linear progression, but it also is not a one time passage. It is not as though I have to start with denial and progress steadily through to acceptance and if I don’t, them I’m doing it wrong. (Question: is there a wrong way to die?) I find that I skip around and repeat these “stages” so much that I no longer think of them as “stages” (the word itself implies a progression) but as “states”, states of being, that expand and contract in importance and that change from time to time.

I think I have accepted that I have terminal cancer and that I am going to die much sooner than I otherwise would have. But I don’t want to.

I’ve written elsewhere and in another context about how I feel about acceptance.

Next to humor (and I make some pretty awful jokes), acceptance is the coping technique I do my best to cultivate. Accepting an unpleasant or bad situation – war or abuse or cancer, for instance – doesn’t mean that I endorse it or like it. It just means that I have looked at reality and noticed that it is real. Not accepting reality is fairly insane. I can’t even work to change something until I have noticed and accepted that it is real.

I don’t like that I am going to die, and I am not ready to die, but I know that I am going to die. I can only hope and pray that as my death approaches and becomes more immediate (unmediated by time) that I will be able to live each day with faith and courage, grace and humor to the last.

What if there’s a war?

Some very kind friends gently chastised me today for getting too wound up in following the news, which is… well, this is the Middle East. I was reminded of a sort of saying about personal safety in an uncertain situation. I don’t know its origin.

Either there will be a war or there won’t be a war.
If there isn’t a war, okay.
If there will be a war, then either we will be involved or we won’t be involved.
If we are not involved, okay.
If we are involved, either my city will be targetted or it won’t be targetted.
If my city is not targetted, okay.
If my city is targetted, it will either be in my neighborhood or it won’t.
If it’s not in my neighborhood, okay.
If it is in my neighborhood, either I will be wounded or I won’t be wounded.
If I’m not wounded, okay.
If I am wounded, then either I will die from the wounds or I won’t.
If I don’t die from the wounds, then I will live out the rest of my life until I die.
Okay.
…..

Now, this is not the way I think about war, but it does demonstrate the futility of worrying about an unknown future and the calming influence (for me, at least) of not spending too much thought or energy on things that I cannot control.

That doesn’t mean I’m insouciant. I have an emergency light source, candles, bottled water, stocks of toilet paper (what? it’s not important?), food in the freezer, stores of dry food like lentils and flour, a camp stove and so on. But having done the legwork, I just have to accept the limit of my personal power.

Next to humor (and I make some pretty awful jokes), acceptance is the coping technique I do my best to cultivate. Accepting an unpleasant or bad situation – war or abuse or cancer, for instance – doesn’t mean that I endorse it or like it. It just means that I have looked at reality and noticed that it is real. Not accepting reality is fairly insane. I can’t even work to change something until I have noticed and accepted that it is real.

This is part of what I mean by “living intentionally”: choosing to live an examined life, taking responsibility for my choices, my thoughts, my actions. An important aspect of my life is a continual process of examining my values and principles and checking my decisions against them. One of my principles is not spending time and energy on things that are outside my sphere of influence.

It is no secret that I am a spiritual and religious woman. Part of my faith system involves intercessory prayer, and I do pray for people and situations. But then I leave it in the hands of my God.

And that’s okay.