Cancer Lesson #62: Chemotherapy Has a Long Tail

Rosa's Long Tail

Cancer Lesson #62: Chemotherapy has a long tail.

I’ve been lucky. My cancer lessons could have been much harder learned. Soon after I finished treatment, however, one slouched into my brain forcing me to comprehend that exhaustion – sheer debilitating fatigue – had become a part of my day.

I’d never felt so feeble, even during chemo — probably because I was at home during most of that time and could rest whenever I wanted.

You see, I had access to both my accumulated sick time and the library’s sick bank, which meant I didn’t have to work during that period. Plus I was between positions so there were no worries about how my department was functioning without me.

Returning to work made all the difference. I discovered I couldn’t work and do everything I thought I needed to, let alone everything I wanted to do. And I was only working part-time!

Most evenings I came home and stared at the walls.

It was weird to feel mostly healthy when you’re not yet completely recovered, but I knew it would get better.

My oncologist told me I was at about 50% of my normal energy level. Chemotherapy, he says, has a long tail.

It’s a great image, bringing to mind a sleek cat slowly disappearing from view. The last one sees is a flick of that tail, and then it’s gone.

I expected my “new normal” to appear as silently as the cat, and it did. One day I realized I felt, well, almost normal. And that was that.

No more tail.

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Cancer Lesson #59: Don’t Take Anything for Granted

Cancer Lesson #59: Don’t take anything for granted.

If you’re a cancer patient, or even an adult, you probably think you understand lesson #59.

I thought I did too, but two experiences near the end of my treatment proved how wrong I was.

You see, throughout my cancer year, from surgery to chemo, I followed my body’s lead on what I could and couldn’t do. If I felt up to something and wanted to do it, I did. If I felt crummy, I stayed home and read or watched movies.

I assumed – that is, took for granted – that I was the best judge of what I was physically capable of, and for the most part, that approach worked.

On two occasions, things turned out differently.

The first started as a normal week, with chemo on Monday and my Neulasta shot on Tuesday. As usual, I felt pretty rough on Tuesday and Wednesday, but by Thursday, I was doing pretty well.

That afternoon, a couple of friends came by, and we had what The Engineer (my husband) would call a good old natter. Everything seemed fine.

A few hours later, the situation changed drastically. Some kind of reaction kicked in, and I was feverish and shivering.

The Engineer helped me upstairs and took my temperature as I tried to remember how high it was allowed to go before we had to call the doctor. It was 101.3, which I convinced myself was below the magic number. (Later I discovered it’s not supposed to go higher than 101).

I’m not stupid. Had I been still been feverish the next morning, I would have called. But after taking a couple of acetaminophen and allowing an hour or so for them to kick in, I finally stopped shuddering.

Friday morning, I woke feeling much better, albeit a little shaky – and shaken – from the experience.

Fast forward a few weeks to my last chemo treatment (yay!) and final Neulasta shot (double yay!)

My muscles and bones ached and pained me for a few days, but by Friday, I was convinced the previous treatment reaction was a fluke.

No fever. No chills. No temperature.

I felt almost normal in an “out-of-breath-by-the-top-of-the-stairs-feeling-really-enervated” kind of way. Chemo was over, and I wasn’t sick or exhausted. Things were looking good, right?

Wrong, and wrong in a BIG way, because that night The Engineer and I went out to dinner and ended up in an ambulance on the way to the hospital.

I’d suggested dining out, even gone so far as to order a glass of wine to celebrate the end of chemo.

After a couple of sips, I started feeling weird. You know, that strange “out there” feeling that tells you something’s not quite right and maybe you might just puke?

“You may have to drink this.” I pushed the glass across the table. “I feel kind of funny.”

“You okay?” asked my loving husband.

“I think so.” I began gulping water in the hope that I was just dehydrated.

Eventually the waitress brought our food. I stared down at my fish and chips, thinking I can’t eat this.

My husband asked again if I was okay.

“No.”

The next thing I remember was waking to the sound of voices saying the ambulance was on its way and the mortifying knowledge I had to go to the bathroom immediately or things would soon get even worse.

The Engineer escorted me to the restroom in a sick version of the walk of shame. I could feel the other diners’ eyes on us, but felt too bad to care (much). Ambulances don’t have toilets, and that’s all I’m going to say on that subject.

Someone (probably the owner – what restaurateur wants an emergency vehicle parked at their front door?) was smart enough to direct the squad to the back. We exited to climb through its open doors.

All I wanted was to go home and crawl in bed. But my husband told me I’d been out for FIVE FREAKING MINUTES(!!). Going to the hospital seemed like a good idea.

Wrong again.

There, they decided to check my blood count – a reasonable suggestion in the situation – and perhaps give me some fluids – also a logical plan.

A uniformed woman came to take me for my chest x-ray.

I was suffering from chemo side effects. Why did I need an x-ray? And more to the point, why should we – okay, why should our insurance pay for one?

They said it was “standard procedure” when someone suffers a syncope episode (http://tinyurl.com/cwegp7) (Quick vocabulary lesson: Syncope is a fancy term for fainting.)

The nurse said I could refuse.

I refused.

Next, they tried to access my port to draw blood. Despite the nurse’s dramatic efforts to make it less painful, it hurt like hell. And he couldn’t get any blood.

They tried a vein.

No joy.

The guy was ready to have another go at the port, but I wasn’t going through that again.

I refused.

Eventually, they decided to give me fluids, so the nurse set up the IV adjusting the controls to push liquid through my veins so I wouldn’t be there all night – another good idea.

Though it burned a little, I figured that was because it was running fast.

The nurse asked if it hurt, which was fortunate because I hadn’t thought to complain.

“Sort of,” I admitted.

When we looked at my arm, it was puffing up from the fluid, which was being pushed into my tissue and not my veins.

At least, I assume that was what was happening since he immediately disconnected the needle.

About then, The Engineer started looking green, and I worried he was going to lose his lunch.

Turns out he hadn’t had any, and witnessing all the poking and prodding was making him ill.

I called it quits.

“I’m going home. I’ll drink lots of fluids, but we’re leaving.”

Funny, no one seemed surprised.

Clutching the extra-large hospital-provided scrubs in one hand, I shuffled toward the door, encountering the woman who had come to take my CAT scan.

I refused that too.

I’ve since visited that restaurant only once, under duress, to celebrate my brother’s birthday.

I hid under a big hat and sunglasses.

Cancer Lesson #50: Everyone Needs a Hand to Hold on to

Cancer Lesson #50: Everyone needs a hand to hold on to.

John Cougar Mellancamp sang about it in the eighties, and it’s true. Cancer treatment is challenging, with the difficulties being different for each person.

I found the constant needle jabs particularly distressing, so my “hand” was literal. Whenever I had to get a shot or have my port poked – and I’m sure the medical profession has a more technical term for that procedure – The Engineer or Darling Daughter came along to hold my hand.

Before chemo, I would have sucked it up. Now, three years later, I do the same. But when I was in treatment, I realized there was no harm in asking for a little comfort.

If that made me a wimp, I didn’t care. There are plenty of things about cancer that can’t be made any easier so if this one small thing helped, I determined to grab on to it with, well, both hands.

 

 

The point is, cancer treatment is hard enough without thinking you need to be brave every single minute. So quit trying to be a hero already. It’s okay to accept help now and then.

It’s a “whatever gets you through the night” kind of thing, with no right or wrong way to do it.

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Cancer Lesson #42: “My, What Bad Taste You Have”

Cancer Lesson #42: “My, what bad taste you have.”

Chemotherapy frequently results in a change in how things taste. When I started treatment, my inner brat constantly whined about how I would survive if I couldn’t taste my beloved Caramel Frappuccino Lights. It would have been more useful to ask what I would do with the money I saved by not buying them, but my childish self is always more concerned about instant gratification rather than money. I refused to think about whether or not I would survive cancer — I just assumed I would.

Dr. H. said some patients compare it to chewing on a metal fence.

Me, I thought it was more like eating a rubber bath mat after not brushing your teeth for a week.

I consoled myself with the idea that some breast cancer patients lose weight during treatment.

Alas, I proved to be in the 50% that gained.

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Cancer Lesson #40: An Appointment in the Chemo Chair

Cancer Lesson #40: An appointment in the chemo chair

Chemo appointments have some commonalities with beauty salon appointments, a fact I first noticed when Susan, Dr. H’s nurse told me she’d “book my chair.”

I began to think of other similarities.

  • Both appointments take place in a comfortable chair. True, the chemo chair is slightly more institutional, but it can recline – most beauty shop chairs don’t.  And you can’t beat that handy-dandy I-V pole and convenient built-in armrest for the arm taking the drugs.
  • As in a hair salon, there are specialists busily scurrying hither and yon, trying to keep clients on schedule. In the chemo room, however, the specialists are highly skilled nurses instead of cosmetologists.
  • Like a timer in a beauty shop, the beep from an I-V monitor will bring someone darting to your side to set the next step of your treatment in motion.
  • In both places, each client’s mixture is different.
    • Hair chemicals are used to straighten hair or curl it, to color a client’s locks or to bleach away their pigment, which makes me think we’d all be better off  learning to be happy with what we’ve got.
    • Chemotherapy chemicals (drugs) are also used for a variety of purposes. Neoadjuvant therapy is given before surgery, often to shrink a tumor to a more manageable size. With breast cancer, this type of chemo is sometimes offered so a patient can have a lumpectomy rather than mastectomy. Chemo may also be given as the main treatment, when the cancer has already spread beyond the primary site at time of diagnosis, or if it spreads after initial treatment. My chemo was adjuvant chemotherapy, meant to kill off any of those nasty sleeping terrorist cancer cells waiting to attack later. Since my surgery was deemed successful at rooting out the problem, my chemo was like life insurance, raising the odds in my favor that I won’t have a recurrence.

The similarities end there. Chemo drugs are poison. Medical staff wear gloves and facemasks for protection, and patients are instructed to tell a nurse if even a drop of one of the drugs touches their skin.

Also, those sitting in the chemo chairs aren’t looking for a change of hairstyle – few of them have hair to worry about. They are there because they are to fight the disease which lurks inside them.

The chemo chairs are full, every weekday from 7:30 to 4 pm, filled with people like you and me, who would like to see their grandchildren graduate, who don’t want to leave their children motherless or their spouse alone to raise their family. Sometimes, they are people who are dying and just want to stay alive a little longer.

A full house. Every hour. Every chair. Every day.

Cancer Lesson #36: Why Did My Body Try to Kill Me?

 

Cancer Lesson #36: Why did my body try to kill me?

One of those “pink ribbon” stores sells a bag that says, “Of course, they’re fake. My real ones tried to kill me.” That’s what cancer is, you know, “…diseases in which abnormal cells divide without control and are able to invade other tissues.” (Definition from National Institute of Health, http://www.cancer.gov/cancertopics/cancerlibrary/what-is-cancer if you’d like the rest of the explanation.)

Basically, some of my own cells turned traitor and began pillaging their neighbors. As if in a miniature Middle East, these terrorist cells attacked whatever got in their way, leaving a trail of waste and destruction in their wake. When the lymph system (a body’s National Guard) stepped in, the renegades went after it as well.

You’d think all that annihilation would – I don’t know – maybe hurt a little? But I felt fine, even after finding my lump (home base of the mutiny). A little worried, maybe, but there was no pain except for the bruising needle jabs necessary for the seemingly endless tests (see Cancer Lesson #13). After an ultrasound revealed two other masses, all three were biopsied.

Lump #1 was cancerous. Lump #2 proved to be a lymph node the outlaws had penetrated. And physically I still felt great.  Oh, sure, there was that queasy feeling in the pit of my stomach when I realized what was coming, and I was relieved to learn Lump #3 was nothing but fibrous tissue. But there was no “discomfort” (as those in the medical field like to call it).

However, the rebel cells, my rebel cells – those dirty, rotten traitors – had to be killed. Left to their own devices, they would surely kill me. A surgical strike was needed to cleanly incise the insurgents. As part of that same surgery (let’s call it “Operation Bodacious”), I chose to have some new neighbors moved into the vacancy the renegades left behind.

Six weeks later, the “new neighbors” (tissue from my stomach, which had “population” to spare) had settled in. With my wounds healing, it was time to bring in the big guns: chemotherapy drugs. These medicines are meant to demolish any sleeper cells the ungrateful rebels left behind, and like all military strikes, they take out innocent bystanders (hair and white blood cells). They would wreak more havoc on my body than the disease had been able to.

Still, I chose to go through the chemo regimen because I don’t want to have to have to go through cancer treatment again. This is especially important because I’ve learned that, unlike most other cancers – where patients are considered cured after five years without recurrence – breast cancer cells can lay dormant for a long time. No one knows how they do it, but they do.

There are no guarantees in cancer treatment, just as there are no guarantees in life, but chemo and hormone inhibitors will raise the odds in my favor. Kind of luck buckling a seatbelt to improve your chances of surviving a car accident. In this case, the seatbelt was drugs so potent I was warned to call the nurse if any dropped on my skin,  and the possible accident is another round of breast cancer.

I called this one “Operation Stayin’ Alive.”