The Art of Losing — Cancer house

Things I wish I had known before I got cancer:

1) You can get shingles easily. Get a shingles shot as soon as you find out you have cancer.

2) You can get cdiff which is a terrible infection and can kill you. You get it when your white blood cells get so compromised.

Okay so do you want to know the gory details? I won’t give you all but I’ll just tell a bit of the story. Remember the entry about my hospitalization (see entry "How Can You Ruin Oatmeal?") Well, I think some of my later infections came from that ordeal and the crazy infusion of antibiotics to quell the infection from my port bc the gi tract then gets so off balance and susceptible to the bad stuff you come in contact with (like fecal matter from your shoes, from bathrooms, contaminated food) you get very sick. And the thing that really pisses me off? NO ONE warned me that this was a possibility. I would have been more hyper-vigilant had I known.

So here’s how it all evolved. My husband and I had decided to visit my parents in North Carolina and then head to the beach after returning from Alaska. Dumb, dumb, dumb, but I did not know any better. I was feeling okay—steroid hangovers, etc. but nothing bad.

So trip to parents went okay—they are frail--my dad has dementia and my mom is taking care of him although she has serious health issues too. We didn’t stay long. We ran a few errands for them but we even stayed in a hotel so that we wouldn’t get one another sick. Oh and we buried a dead cat that had died in their garage. Shew-whee. So Thursday (which was a day after chemo) we headed to the beach. Thurs. night was just fine—weather good, nice restaurant. Friday another great day—but that night we ate at a Subway and I’m not sure where that’s where I got my cdiff but it was hot and didn’t look super clean but maybe it was just me not being careful about hygiene somewhere.

At any rate, Saturday dawned but I noticed I wasn’t hungry. By the afternoon my stomach was in huge trouble. I took a bath and settled down in bed. Dan went to pharmacy to get medicines. Montezuma’s revenge, I thought. We left the hotel the next day, and I still couldn’t eat.

By Monday, I was pretty sick. I called the doc and they told me to bring in a sample to test for cdiff. What????? Dan said, “oh you probably don’t have that.” Sadly with a fever of 101 I dragged myself to the hospital and the test came back positive the next day. It’s highly contagious and I worried about my husband getting sick too. You can die from this—if you can’t get it under control you can lose massive amounts of weight and make others sick. I was so depressed. I felt as if I had lost control of everything about my health. I felt dirty bc cdiff spreads through spores from your body. Ugh. Plus my perineum area was super-inflamed with something that I had never seen. Lesions. Pain. And at the top of my sacrum the skin had started to bubble up in ulcers that I had never seen. I couldn’t sit or lie down without being in pain. I was like something from outer space with scales on my back and deadly spores emanating from my body.

Fortunately as soon as my dear friend Polly Tullock heard this, she raced over to my house to clean it. I had already changed sheets but was really too weak to be thorough. My friends I’ve said before have been golden threads through this whole thing. And two weeks later, Dan’s office sent over a cleaning crew for my house.

Nevertheless for a week I walked about in excruciating pain. My oncologist was baffled when I saw her on Wednesday and they decided to delay treatment bc my white blood count was below 1,000. To top it off my rash wasn’t getting better. Finally I called on Friday saying I was in pain level 8 out of a possible 10. They told me to make an appt. with a gyn to see what he thought. I did. I don’t even remember that weekend bc I was in so much pain.

My dear doctor, Walton Smith, agreed to see me early Monday. He looked at it and said "it looks like shingles" and took swabs. He started treating me for it right away. Nevertheless, he suggested I see a dermatologist but I couldn’t get an appt. with one till July 6, and it was weeks away!

By the time I saw my oncologist the next week she told me the shingles test had come back negative. That freaked me out bc I wondered what am I dealing with? A flesh eating bacteria (oh god, no!) but I kept taking the medicine he prescribed. They delayed treatment again bc I was in so much pain.

Finally Dr. Smith’s called me the next Tues. and said the shingles test did show positive. It was just slow to develop. I will never, ever forget that he is my hero and diagnosed the shingles just by looking at it.

Now it’s been a month later since this all started about June 10. It’s been awful and I’m still taking sitz baths and pain pills for pain but the shingles are slowly getting better. It made me grateful for the times when my body worked/and will work properly. And again, I’m really pretty angry no one told me of the shingles risk associated with chemotherapy.

My suffering has also made me think about people in other parts of the world who don’t have these amazing doctors and medicines to help them. I say prayers for women regularly who have to deal with such agony. I don’t know who they are but it’s out there.

I’m back on track with chemotherapy and am on treatment 12. And to top all of this off, I miss-stepped while cleaning our pool and my knee when down hard on the cement. I’m beginning to feel like Job! My knee is maybe a little better almost a week later but with low white blood cells it’s hard to heal quickly. All I keep thinking is I have to get better. Ironically the cancer and the cdiff have been the least of my worries the past few weeks where I’ve felt discouraged, contagious and helpless because no one can really help me with these persistent problems. Sign. My husband has been great though bc many times with my knee and other terrible pain, I didn’t and don't want to move.

And he will watch hours of TV shows like Supernatural with me. True love. And by the way as of July 1, we have been married 39 years. Truly it’s been for better or worse.

And here’s the Elizabeth Bishop poem I kept thinking about as I have lost my hair, my eyebrows, my eyelashes, my health, and most recently my ability to walk without pain. Ugh.

One Art

The art of losing isn’t hard to master;

so many things seem filled with the intent

to be lost that their loss is no disaster.

Lose something every day. Accept the fluster

of lost door keys, the hour badly spent.

The art of losing isn’t hard to master.

Then practice losing farther, losing faster:

places, and names, and where it was you meant

to travel. None of these will bring disaster.

I lost my mother’s watch. And look! my last, or

next-to-last, of three loved houses went.

The art of losing isn’t hard to master.

I lost two cities, lovely ones. And, vaster,

some realms I owned, two rivers, a continent.

I miss them, but it wasn’t a disaster.

—Even losing you (the joking voice, a gesture

I love) I shan’t have lied. It’s evident

the art of losing’s not too hard to master

though it may look like (Write it!) like disaster.

Source: The Complete Poems 1926-1979 (Farrar, Straus and Giroux, 1983)