Thursday, April 12, 2012

In which my dad is a pincushion for a medical student

My dad was in the hospital. They'd diagnosed cancer and he'd started the chemo, which was brutal. His hair had started to fall out. We had a little head-shaving ceremony outside my mom's room at the temporary quarters on base.

Wait. Let me give you some more context. My parents had moved to Sicily in August 1996 so my dad, who had been retired from the air force for about 14 years, could take a job teaching junior high math and science to the kids at the American navy base on Sicily.

In November 1996, he thought he'd pulled a muscle running a 10K.

It wasn't a pulled muscle. It was non-Hodgkin's blue cell lymphoma. I think it was stage four. If it wasn't when he was diagnosed, it became stage four pretty quickly. Stage four is the last stage. Then you die. If you get cancer, you want stage one. Of course, you don't want cancer at all. That's the best situation.

He had had a major physical before the Dept of Defense schools hired him in August. They don't want to hire sick people to be teachers and pay to send them abroad. That's a waste of money. There was no sign of cancer when he had his physical, but it showed up very soon after that.

After being medivaced back to the US in December 1996, he was at Wilford Hall medical center at Lackland AFB in San Antonio. I was living in Austin and unemployed, so I spent a lot of time down at the hospital. My mom was trying to find a place to live - they had realized my dad would probably not be returning to teaching very soon - and get their stuff shipped from Italy back to the US. It was a time when organized people triumph and disorganized people crater. My mother could move an army with her logistical skills, but even as uber-organized as she is, doing all this while her husband was in the hospital fighting cancer was brutal.

She had to return to Italy to receive their household goods, which hadn't even arrived by the time my dad got sick, and have them shipped back. Even super organized women can't be two places at once. When she went to Italy, I covered for her with my dad. Even when she was in San Antonio, she had things to do that only she could do, so I spent a lot of time just sitting with my dad.

I had been very discouraged that I couldn't find a job after the Peace Corps, but now I am very happy that I had that time with my dad. It was a blessing and a gift. Back then, I was so worried about my employment situation, but if I had to be unemployed for a year to be able to be with my dad in the last months of his life, it was a fair tradeoff. Now I am unemployed again and apparently unemployable, but nobody in my family is sick. I'm not sure how to classify this one.

I want to say something about "fighting" cancer. I hate it - hate it - when people praise cancer survivors as being "fighters" and "tough."

What cancer survivors are mainly is lucky.

When you say someone who survives really fought or really wanted to live, what you are implying is that someone who dies from cancer just didn't fight hard enough. Just didn't want to live enough.

I know that's not how you mean it. It never even occurred to you. But when I hear it - when other people who have lost loved ones to cancer hear it, what we hear is, "Only the people who really want to live survive cancer. Only the people who do it right live. If you die from cancer, it's because you did it wrong."

Which is not true. My dad didn't want to die. We sure didn't want him to die. But not everyone is cured. Someday, maybe, I hope. But today, people still die from cancer and it's not because they gave up. It's because they were unlucky.

My dad was in the hospital. We got him a day pass to leave and spend some time outdoors - it was a nice February day in south Texas. He was too weak to spend much time doing anything but sitting, but we pulled some chairs out to the sidewalk in front of my mom's room and sat in the sun.

Because of the chemo, his hair had started to fall out. Chemo kills all the fast-growing cells in your body. These cells include cancer cells, but also include hair cells and white blood cells, which is why some people lose their hair and why most people going through chemo have to be very careful about germs - they have no resistance with their white blood cells wiped out as part of the cycle.

The falling hair was becoming a nuisance. He asked us to cut if off. My mom had gotten an electric razor from somewhere. She must have borrowed it from some San Antonio friends. She is one of the most prepared persons you will ever meet, but even my mom doesn't carry an electric shaver around with her as a matter of course.

She does carry her gardening and house tools with her when she travels by car, though. The first time she came to visit me in Memphis, she spent the days doing minor repairs on my house and working in the yard while I was at work.

My mom is the houseguest you definitely want to return. She does not lie around waiting to be entertained. She doesn't complain that she can't watch TV and she doesn't drink all of your booze. She finds problems to solve and solves them and then she helps with dinner.

I asked my dad if I could give him a mohawk first. He rolled his eyes, maybe remembering my brother's mohawk when he was in high school.

At least my brother never got a tattoo. Hair grows. Tattoos are forever. I am very glad tattoos had not become fashionable when I was in high school. Not that I would have gotten one - I faint when someone pierces my skin with a needle, which is the appropriate reaction.

I shaved the sides of his head, then my mom took a photo of him smiling uncertainly with his mohawk.

It was not a pretty picture. He'd been in the hospital for over a month and had gained a bunch of weight (edema from when his kidneys started to fail before they started the chemo), then lost it. He was now much thinner than he had been, and he would get even thinner yet before the chemo was over. His normal weight was about 170, which is average for a man of 5'8". At its lowest, he was about 120 and skeletal. He was too weak to move. When the young airmen would change his diaper and his sheets - oh, yes - that is one of the things that happens with chemo - you lose control of your bowels - the one would lift my dad in his arms like a baby and hold him - a cancer pieta - while the other stripped the bed and re-made it with clean linens.

The entire time he was in the hospital, I never heard any of these young men ever call my dad anything but "sir." None of this first name business. Bad enough to lose your physical dignity but to lose all psychic dignity as well? That would be too much.

I shaved the rest of his hair off his pale head. He smiled again. A very small smile. It's hard to smile when you feel like crap and know you are probably going to die a lot sooner than you had planned.

A few days later, they wanted to give my dad a lumbar puncture. The test was to see how far the cancer had spread. The doctor came in with a team of medical students. The one intern was about to do her first lumbar puncture.

They can't anesthetize you for a lumbar puncture. I guess it's because you can't anesthetize bone? Any physicians reading please chime in.

My dad was wearing a hospital gown and nothing else, which was fine because he was covered with the bed linens. But the intern needed to have his back exposed to her. "Lie on your side and be perfectly still," she instructed as she pulled back the sheets and lifted his gown away from below his waist.

"I'll wait in the hall," I told my dad, as I could see that he would be almost naked for this procedure.

I stepped into the hall and stood next to the door. A few moments later, I heard a smothered scream. "Come back in here!" my dad gasped.

"I don't want to see your penis!" I told him in a loud whisper as I leaned around the door frame. And I didn't. Sooooo inappropriate.

"I don't care," he breathed. "Come back in here and hold my hand."

I walked back into the room carefully looking at my dad's face and not anywhere else. I sat next to his shoulder, still looking toward his face, and holding his hand. He clenched it so tightly that it hurt.

The intern couldn't get the right spot. Her face set with determination, she tried again. And again. She poked that needle in against the bone.

My dad squeezed my hand harder. He bit his lip, but I could still hear his moans. I felt the tears rolling down my face. I hated that intern. I hated her.

She finally got the needle in the bone. "Be very still," she warned, as she sucked out the fluid.

I stroked my dad's bald head and squeezed his hand back as the intern pulled his gown down and put the covers back. I didn't even look at her. She was dead to me.

I know she was just doing her job and that everyone has to learn somehow, but maybe she could have practiced on something or someone who wasn't my dad first. I felt sick to my stomach then as my dad breathed heavily and quivered in pain and I feel sick to my stomach now as I write this, 15 years later. I can still feel his hand squeezing mine so hard that it hurt. But I didn't mind: I was glad to share his pain. If I could have, I would have taken it from him and felt it all myself. Is there anything worse than watching someone you love suffer?

The tests revealed nothing. The cancer had not spread that far. Yet. Extra pain. For nothing.

8 comments:

  1. What a brutally painful post.

    What you said about "fighting cancer" is so true. My husband was a dead man the moment the first gliobastoma cell appeared in his brain. Glioblastoma wins every time. Every. Single. Time. Is it really a fight if you have no chance to win?

    Of course, we didn't even have a chance to philosophize about that question, since he died just one week after diagnosis ... but my mother lived four years after diagnosis with Stage 4 ovarian cancer. She would be the first to say that Yes, she wanted to live to see her grandsons and great-grands grow up. And she would also be the first to tell you there's no "fighting" the disease.

    My sister got lucky: She's a five-year survivor of stomach cancer. She didn't beat the disease, though -- she beat the odds. The disease is still there, niggling at the back of her mind, at the back of all our minds. Is it back? Is this an ordinary ache, or is it cancer? Is this it? Or is just indigestion? The cancer is gone, but the dis-ease remains.

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    1. Alicia - that's it. Cancer wins. Cancer almost always wins because it's not a fight.

      I am so sorry about your husband. I read about him in your blog. What a heartbreaking loss. And your mom and your sister - let's hope she continues to beat the odds.

      I hate cancer.

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  2. GD, you and Alicia are both so right. My dad was Stage 4 lung cancer when diagnosed, and only lived six weeks more. While I did get to see him and say goodbye, I would have much preferred to have some weeks to spend with him. You were lucky to have the time you did - difficult as it was.

    I'm appalled that another medical person didn;t get that intern out of there after the second attempt. That a terrible story.

    Hugs to both you and Alicia.

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    1. Webb, I am so glad I got to spend the time I did with my dad. I wish he hadn't been in such pain most of the time, but I selfishly wanted him around for as long as possible.

      Thanks for the hug.

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    2. PS I wish you'd had more than six weeks.

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  3. So I've started the work day fighting tears at my desk. I have a much beloved father and mother, both of whom were lucky ones when it came to cancer. But I've been at those bedsides for cancer and strokes and heart attacks, and just thinking about it brings the tears again. I know at their ages and with their issues, luck could run out at any time, and I dread NOT being there when they need me.

    I am so sorry for your loss, and for Alicia's. But also grateful that we have people in our lives that love us and that we love so much that their loss is so grievous. That's the double-edged sword, isn't it?

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    1. pq, You are so right. The price we pay for love is grief. It's worth it. There are certainly people whose passing I will not mourn - and I don't enjoy them while they're alive, either. It would be better to have the joy, even if it meant I would have the grief later.

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