Tuesday, April 21, 2015

The Upside of the Roller Coaster

I have eight chemo treatments to go.  Last week was difficult, but after another round of antibiotics with a side of steroids, I feel better.  I even ate a cheeseburger last night for dinner, not only because I was hungry for one, but because I was hungry. 

Hungry?  Yes.  I felt well enough to actually BE hungry, and the sores in my throat are healed.  It's been so long since I remember being hungry, instead of just having a bit of an appetite.  I suddenly wasn't sure what to do with that growling tummy.  There was a story in the paper yesterday about a demure hausfrau who polished off THREE 72oz steak dinners(with salad, bread, and loaded baked potatoes) in 20 minutes in a competitive eating contest.  Yesterday, I was hungry enough that, had I been willing to be seen within a 100 mile radius of Amarillo, I could have gone head to head with that woman.

The tapioca pudding in the fridge went uneaten and I went a little crazy.  Well, not too crazy.  I had salmon, and a salad, and eggs, and a banana, and toast, and a cheeseburger with two fries. Also, I ate some donuts, even though my best friend Michelle has warned me never to eat sugar, because I was feeling rather dangerous.  This morning I had toast, coffee, and shrimp, followed by a lunch of tilapia tacos, spinach queso, chips, and potato soup.  After each bite, I reveled in the taste, because that came back too.  I could taste the extra pepper on the tilapia, and I cried a little about that. 

Ultimately I gained two pounds from last week, instead of the scale moving the other way.  I'm okay with that.  My fingernails are still looking as though they are going to fall off, but the blisters on my hands are gone and the swelling is down enough that I could do some crochet while I had my chemo.  I didn't realize how much I had come to rely on the distracting meditative peace that comes from crocheting during this ordeal, until my fingers were giant sausages incapable of bending to the simplest knots.  I've got a little of my independence back! 

And I'm glad to be alive, and ready for the next 8 weeks, whatever comes.  I'm ready to fight again.

Wednesday, April 15, 2015

Helpless Sausage Fingers

I'm at the halfway mark for chemo. Just eight treatments to go in this leg of the marathon.  I've discovered that it's not the poisons that get to you, but the side effects.  No matter how many times the doctor, the nurses, or my husband talk about the side effects, they aren't real until they happen. It doesn't help that they give a list of 20,000 possible side effects, of which you may get ten in a number of combinations.  You just have to wait and see what the chemo fairy brings you and count yourself lucky if you don't get the "sudden death" side effect. 

With the previous drug, it was all about being tired and nauseated.  I had a week off between those treatments to recover.  The biggest side effect of that drug was muscle weakness, which means that I couldn't open things like jars of pickles and bottles of water.   That had me wallowing in a vat of self-pity.  It's always been a point of pride that I could do things on my own, like open jars.  That tiny feeling of independence was sometimes all I had in my twenties, when I lived on my own.  I would say to myself, at least I'm not so helpless and fragile that I can't open my own jars or kill a bug that needs killing. Fortunately, that side effect went away as soon as I was off that particular chemo drug, and there was much rejoicing when I was able to open a bottle of Gatorade for my son without resorting to power tools.

This current chemo drug is a weekly visit, and the side effects were non-existent the first time.  I even felt hungry enough to eat afterwards!  As more of the poison has been introduced, however, the side effects have become more obvious.  The skin on my toes has been peeling off.  My hands are swollen and blisters are popping up.  I have helpless sausage fingers, that can't open necklace clasps or peel the tops off of things or unbutton things.  My fingernails feel as though someone whacked them with a hammer; at night they throb painfully.  It's difficult to complete any of the fine motor tasks I used to take for granted, and I find myself getting tearful when I can't hold my pen correctly, or when it hurts to type. That independence I so treasure is slipping away again.

My gums are all painful and inflamed, with sores popping up on my tongue and in my throat. It hurts to swallow, and therefore it hurts to eat, or to drink. Eating and drinking are two of my most favorite past times on the planet, and to not be able to enjoy my two favorite things has been another upset for me.

I've got eight more weeks of this. The downhill is ahead, the end is in sight.  I know it's going to get worse, however, before it gets better.  I am trying to keep a positive attitude.  I feel as though I've fought for everything my entire life, whether that's actually true or not, and I'm still fighting, blisters in my throat be damned.  I plan to keep fighting until I beat this. 

But this week...

I used to stare aghast at people who survived cancer, who told me flat out that they would rather die than go through chemo again. My own father told me that five years ago, and it just floored me. He's a fighter, too.  Why would he not want to fight?  I get my general stubbornness from him. It's not in my nature to give up, ever, and it was beyond me to think of just not fighting anymore.  But I get it now.  This week, it makes sense.  I understand that feeling now.  How tired and worn out would I have to be to want to stop fighting, I wonder?  I don't know, and that scares me.

This week was hard. 



Wednesday, April 8, 2015

A Roller Coaster That I Don't Like

One of my favorite movies is Parenthood. It stars Steve Martin and a host of other actors portraying an extended family and their growing up and older and wiser.  In one scene, Steve Martin is ranting about something, and his grandmother comes into the room and talks about how her husband took her on a roller coaster when she was 19.  I loved that story about how something could be so scary and so fun at the same time.  A metaphor for life. 

I used to love the roller coaster when I was a kid.  Unfortunately, as I got older, my inner ears ganged up on me.  Now I can't even look at a roller coaster without getting nauseated.  But I still love the idea of the ups and downs that life can take, even if my days of actually riding roller coasters has been curtailed.  And while I've been going through cancer treatment, it's helped me to see this as a dip in the ride.  

This week after my by now routine chemo treatment, the Physician's Assistant at the oncologist asked to speak with me.  Larry and I were puzzled, but we went into one of the exam rooms and waited.  We haven't had a lot of dealings with this PA.  Mostly we speak either to the oncologist directly or his nurse practitioner, both of whom are very laid back sorts of individuals.  The PA came in and told me that the cancer markers in my blood were up, and he showed me a graph with lovely colors.  Then he said my liver markers were also up, and showed me another graph.  The implication may not have been that the cancer had spread to my liver, but where do you think my brain went?

"And?" I asked. "What does this mean? Why would my cancer markers be up if I am in the middle of chemo?"

The upshot of his discussion was that I needed to have a liver ultrasound, and they needed to do another blood test.  The first test could have been an error, he said. The thought popped into my head while he was speaking that if the first test might have been an error, wouldn't it be better to wait until after the second test to say anything?  We asked a few questions, and I suppose that we confused him, because he finally said that we should speak to the doctor, who wasn't in the office at that time. I made an appointment to talk to the oncologist on Thursday, and we left. 

Of course we freaked right out immediately.  I cried off and on for the rest of the day, finally taking a Xanax, because my eyes were getting all puffy and I didn't want Zane to see me.  He already thinks that I look like a puffy Mr. Clean. 

Once I calmed down a little, I started thinking about my liver.  My liver and I have had a long and storied relationship.  Over the years, through many alcoholic beverages, many migraines, and lots of chronic joint pain, my liver has struggled to filter my blood.  It has done an admirable job, but the long term result of my hard living youth and middle age has been that my liver markers tend to be higher than expected.  In fact, the last time I spoke with my family doctor, he mentioned that very fact.  So what was different now?  How did one leap from higher liver markers straight to cancer spreading there? 

This was an extra dip in the roller coaster ride that is cancer.

I was torn between panic, hysteria, and my normal, healthy skepticism. My inner compass had been thrown off way back in September, when what I thought was no big deal turned out to be cancer.  I was wrong then, what if I was wrong now?  I was a mess. I spent most of my morning in my office, alternately sobbing and getting angry. 

My husband, who is my champion in more ways than I can even count, was thinking the same thing.  Except instead of sitting in his classroom and sobbing quietly like I was, Larry got on the phone and called the oncologist.  He spoke to the nurse practitioner about what the PA said, and she conferred with the doctor.  My test results were not significant for anything, they told Larry.  I didn't need an ultrasound.  I didn't need to come in and talk to the doctor.  There was no problem.   And as I had known, my liver markers had always been elevated, so that was not a big deal, either.  Essentially, the PA freaked us out for nothing. I'd really like to throat punch him. 

Larry texted me the news, which made me go from sobbing to euphoric. Sort of bipolar, I suppose.  But at least the roller coaster is going the right direction now.