nurses rule

Everyone knows that one of the best ways to pick a doctor is to ask a nurse. Without a nurse’s endorsement the choice is iffy at best. When my son was 10 and facing emergency surgery, I followed one of the nurses out into the hall and nearly pinned her to wall, “who would you have do this?” She told me. Dr. J saved my son’s life, but so did she.

Perhaps it is because I grew up with a mom who was a nurse, but I have always known that it is the nurses you listen to, the nurses you trust, and the nurses you rely on. So when the nurses told me to have a port (a device planted in my chest to act as a super IV) put in, I did. And when a nurse told me she didn’t trust my port, despite what the doctors said, and the hospital tests said, I believed her. Yes, the doctors have the education and the training and the knowledge, but the nurses do too and they are there every single day and see the results of the doctor’s orders. They have invaluable working knowledge and experience, and as far as I’m concerned, the buck stops with them.

I had my port put in on a Friday morning. Another surgery, but minor outpatient stuff. On Monday, we showed up for chemo and the trouble began. In port-lingo they couldn’t get a blood-draw. Sometimes ports don’t draw—maybe 1 in 10—
(Again with the statistics and why am I always on the small end?) Still, they also had trouble putting things in, (the entire point of a port.) The nurses ran what they called “draino” to unplug the port, we waited. They tried different-sized needles and different-sized nurses, and put me in different positions. No luck. Eventually it worked, sort of—stuff could go in, but not come out. Towards the end of the day they sent me to the hospital for a dye-test to see if the port was properly positioned. The test came out positive—perfectly, properly positioned, I was good to go. The next day I showed up, ready to hook up to chemo despite the one-way situation.

Except that one of the nurses said, “I’m not comfortable using that port with this chemo when there is no blood draw.” After more manipulations, more draino and more waiting, the port began to draw blood! We cheered. I was hooked up and immediately the first medication, the anti-nausea drug, began to well up in my chest at the port site. Dang.

Three regular IV’s later, I had my chemo, sort of. The danger of using a regular IV with this nasty chemo drug, nicknamed appropriately, “red devil,” is that if it leaks (a vein blows) the drug ‘burns’ skin tissue. Halfway into the treatment my arm began to burn and sure enough I have a nice 2 inch red spot as a souvenir.

(And isn’t all this more than you ever wanted to hear about chemo? I know it is for me!)

Here’s my point. Throughout all of this it was the nurses who were there with me and it has been the nurses who have followed up with me. When I returned to the surgeon who implanted my defunct port and was quite sure he could get it to work, I was uncharacteristically clear that we would not be using this port for anything. I certainly don’t want the red devil welling up in my chest.

Don’t get me wrong. I love my surgeon (he was highly recommended by a number of nurses) and I don’t blame him for the fact that it doesn’t work (though it would be nice to get a refund.) I just love my nurses more. And that is as it should be. I know my mom would agree.

"argh!"

So, sometimes things don’t go right. Twenty minutes into my second chemo, I felt funny. I sat up straighter, I had a tightening in my stomach that radiated to my back, bringing labor pains back to mind. Suddenly I was hot—but this was a hot flash on steroids, like I was about to possibly self-combust. I buzzed the nurses then told my posse (Linda, my friend of 35 years who had flown in from Ohio, and my daughters), “I feel funny.”
I suddenly felt it was important to report every odd occurrence so that after I passed out they would know.

“Stars, I see stars.”

Then, as the nurses rushed in, “…trouble breathing…”

They stopped the drip, gave me steroids, Benadryl, oxygen; Linda massaged my back. My daughters looked pale and hovered close. The clenching spasms stopped. I could breathe. The stars twinkled on for a while.

I am one in 2% who have an allergic reaction on a second dose of Taxotere. Again with the statistics. Yippee.

So, it is protocol to “challenge” the reaction. After a half hour or so, they started the drip again at a half-rate. Admittedly, I was a bit jittery at this point, but within 20 minutes my back labor was back.

So, the good news was that they took the IV out, and we went home to enjoy chicken chili and the rest of a fun, no-side-effects-bothered weekend. Linda and I got some serious Christmas shopping finished and had a great weekend together.

I found out the bad news on Wednesday. There are several types of chemo drugs. They range from nasty to nastier. I got signed up for the nastier one. The one that eats your skin tissue if a vein blows, so I have to get a port—the one that in just 15% of cases can damage the heart. (I raised my brow at the doctor,
“That’s comforting; you’re talking to a 2%-er.”) …The one that, after my first application, left me with three days of nausea.

The worst part of the news however, was that I had to start all over again. The drugs aren’t substitutable—for the best effect I still need four applications.

You could hear my “argh!” across four states. But it doesn’t take long for the perspective to set in. My hospital roomie, and new friend, has two different courses of chemo and then radiation to do. There are thousands of cancer patients taking chemo weekly, or radiation daily, to stay alive. I can’t whine about this.

What I like to do is think about spring. I usually do this at this time of year anyway. This time my dreams involve gardening and grass and growing my hair back.

Uncle Fester

It started on a Friday. Day 17…lose hair. I didn’t wash my hair for fear of having to deal with it before work that morning. I tried to avoid touching my hair at all, because every time I did, a handful would come out. By Saturday I was leaving a serious trail of DNA everywhere I went. I went to a party that night and told the hostess she would need to vacuum after I left.

And the thing is, I wanted it gone at that point. My hair hurt. It felt like it used to after wearing a high ponytail, then taking it down. When I got home that night I started pulling it out. My dog seemed concerned about the head of hair growing on the coffee table. I had a lot of hair. At one point I took the dogs out and let handfuls of hair blow in the wind; I hope the neighbors weren’t watching. Too bad it wasn’t spring, because the birds could have had a field day making nests with it, and I would have enjoyed seeing little nests built of red hair all around the yard.

Of course it didn’t all come out. I was left with stubble and tufts. The next day I went to tutor and wore my new hair for the first time. I stopped at Starbucks for coffee first, but left my hood on because I felt ridiculously conspicuous. It also hurt. The stubble and tufts dug into my head under the wig and by the end of tutoring I had a horrible headache that had nothing to do with ACT prep.

After tutoring I was supposed to meet my daughter’s downtown for lunch. I couldn’t do it, I cried into the phone in a sudden outburst. As is their way, they surprised me by coming home instead. I was sitting on the couch when they arrived and threw a blanket over my head in a panic. They came in smiling and demanding to see. Of course they laughed.

Then they took me into the bathroom and shaved my head—something daughters shouldn’t have to do for their moms—but really who else would I ask? What a relief it was and putting the wig on no longer hurt.

I have seen people who look good bald. I am not one of them. I stared for a long time trying to think of whom I resembled, besides a turtle…then it hit me. I look like Uncle Fester.

So it is the wig for me. Many people don’t even notice. Many people have complimented it so much I wonder how bad my old hair looked! One little first grader had the best compliment however.
“Nice shower!” she said to me.
“Nice shower? “ I asked.
“Yes, your hair is so shiny and clean.”
“Thank you,” I answered.