I hate my cancer body!

shadowOkay, I got used to the surgical scars across my chest and under my arm. I got used to the radiation burn down the middle of my chest. I got used to the weakness in my left arm after surgery. I got used to my lopsided silhouette and to none of my clothes fitting properly, even with that stupid breast prosthesis that never looks right. I’m used to all that by now.

What I hate is what is happening on the inside of my body–and I’m not even talking about the tumors per se, or the pain. It’s the invisible erosion of my physical self. The white blood cells that have been destroyed–apparently forever–by chemotherapy. The exhaustion after minor exertion. The lack of appetite. The inability to sustain even mild exercise for more than ten minutes, if that.

What brought this on? Changing my bed linen. I pulled the bed out from the wall and felt a pang of guilt because I can’t wash the floor under my bed as often as the rest of the floor is swept and washed. (I don’t do it myself any more, and there is a limit to what I can ask my underpaid household helper to do.) I felt so bad that I took a picture and texted it to a friend for a reality check. The answer came back “In this picture it actually looks clean.” I accept that, but I still know that it is not as clean as my formerly houseproud self would have had it.

So on to changing the bed linen. Pull the bed out for easy access, lift the bottom of the mattress on to the footboard. Take off the old sheets, sit down for a moment to catch my breath. Put on the clean bottom sheet, slide the mattress back down. Sit down again to breathe and then get up to spread the top sheet. Sit down to put clean pillow cases on two pillows, then get up to arrange the pillows on the bed. Decide not to sit down yet, push the bed back into the corner.

I sat down again, feeling dizzy and out of breath. Took my pulse: 114 beats per minute. That is actually within the bottom range of aerobic exercise for me. From changing my bed! I really, really hate this. I was never a triathlete or anything of the sort, but I was reasonably fit. I enjoyed urban hiking and riding my exercise bike “long distance”. I feel diminished, humiliated.

It is hard to separate the ravages of cancer from the effects of normal aging, but I am only fifty-eight years old, not seventy. My eyes have gotten so bad that I can no longer do the fine lacemaking that I have loved for so long. My hands have become weak and unsteady, so it is even difficult for me to knit, so that when I use the computer for writing or for doing the translations that are my livelihood  I often have to use dictation software because I can no longer type as quickly or accurately as I used to.

There is much in my life for which I am sincerely grateful, not least the fact that I am still alive. I am still committed to finding a modus vivendi with my cancer, rather than putting my energy into battling it. That doesn’t mean that I can’t hate cancer and everything it has done to me. And that’s where I’m at today.

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.

Tired to the point of tears

I cried this evening.

I began to get tearful while talking to a friend on the phone, describing how tired I’ve been lately. Just tired. “It scares me,” I said, and I welled up. I did my best to keep it in but only partially succeeded, so I went and blew my nose and splashed water on my face and came back to the phone, declaring myself to be “just fine”.

After the phone call I set about doing evening things  – tidying the house, wiping the kitchen counters, going upstairs to get ready for bed – and I burst into tears. I feel like I’m declining – slowly, but inexorably. 

I’m not ready yet. So much left to do! There’s a major writing project that is barely off the starting block. There are people I haven’t yet told how important they are to me. There is a broken relationship in my family that I’d love to mend before I leave. 

Then I realized that it’s still not death that is worrying me, but the inactivity of end-stage illness. I am nowhere near that point, but I find myself thinking about it more often recently. This increasing fatigue makes me think of it.

Being the person I am, I began researching cancer-related fatigue. This is a way of gaining control: perhaps there are factors I can influence. Even if there are not, knowledge is a kind of mastery for me. Things are less intimidating and frightening if I understand them.

I found this diagram at CancerNetwork, home of the journal Oncology. It is from an article called “Fatigue and Dyspnea” by  Sriram Yennurajalingam, MD and Eduardo Bruera, MD of the Department of Palliative Care and Rehabilitation Medicine at M. D. Anderson Cancer Center and was published on 11 November, 2011 in the online edition of Oncology.

Factors in cancer-related fatigue

I can see I’ll be referring to it frequently in the coming days. I already see some factors that I can influence and probably change with a resultant improvement in my energy level.

  • Dehydration. I am very bad at getting enough to drink, especially in the winter. I already have a medicine tracking sheet, so I’m going to add a column to it where I can keep track of how much I drink each day.
  • Pain/drug side effects. I need to rethink my decisions about pain control, to discuss it again with my doctors.
  • Psychological distress. I will stop diagnosing myself (I’m fine!) and arrange to be evaluated, especially for depression and anxiety.

And now I feel much better – for real this time. I’ve gathered information and started to make an action plan. It’s a quarter to one in the morning; I should probably think about getting some actual sleep after all this talk about fatigue.