In Sickness and in Health

Tomorrow will be eight weeks since my initial diagnosis.  I have “officially” had cancer for 55 days.  It’s amazing how much can happen in such a short period.  Things are beginning to look a little brighter.    As our nation celebrates its independence this weekend, I will be celebrating my own personal freedom from radiation and chemotherapy.  I’m down to my last two days of treatment, and I’m looking forward to a 6-8 week break.

I’m hopeful that within a few weeks, my body will begin to heal. With a little luck, I will be able to enjoy some of the summer with my family before surgery sidelines me in early September.

Ok – update is over. It’s time to get to what’s really on my mind.

I’ve noticed something interesting over the past two months.  Whenever friends and family call to check in or offer support, they first ask how I’m doing.  That makes sense.  Then after a little chitchat, they ask how the kids are coping.  This is also a reasonable inquiry.  What’s interesting is that very few people ask how Gregg is holding up through all of this. 

I suppose it’s not unusual for the spouse of someone with cancer to take a bit of a background role during the whole experience.  It’s easy to overlook that Gregg’s world also fell apart on May 5^th. I will never forget the sight of him when the doctor told us the bad news.  His face lost all color; he leaned back against the wall; and he slowly slid down until his head rested on his knees.  He told me later he had to do this to keep from passing out.

In some ways, I think this experience is actually harder on him than it is on me.  Gregg is a doer.  He sets a goal, makes a plan, and gets things done.  He’s also a fixer.  I can’t begin to count the number of things he has repaired and restored over the years.  Unfortunately, he can’t do anything about my illness.  Cancer has relegated him to the sidelines. I know if our roles were reversed, I’d be a wreck.  I can’t begin to imagine how difficult it would be to watch him suffer through something like this and know I couldn’t make it “all better”. He can support me; he can love me; he can comfort me; but he can’t fix me. 

Let me tell you, the support, love, and comfort he provides are what get me through each day.  Many an afternoon he has come home from work to find me exhausted and uncomfortable on the couch. He simply takes over from there. I’ve heard many men refer to caring for their children as “babysitting”.  Gregg knows that if the kids are his, it isn’t babysitting; it’s parenting.

I wrote in an earlier post that Gregg has always done more than his fair share in our home.  Now he carries his load and most of mine as well.  I also wrote that 90% of the time I’m ok, but the other 10% I’m a raving lunatic.  Poor Gregg gets the brunt of my lunacy, and he accepts it with calm and patient understanding.

I doubt when we exchanged vows all those years ago, Gregg could imagine what married life had in store for him.  The promise of “in sickness and in health” is noble and romantic, but it’s also vague.  The everyday reality of living with an ill spouse is hard work.  Gregg has had to step up and help me in ways I never could have, or wanted to, envision. 

Cancer has also disrupted other aspects of our marriage.  Radiation therapy affects not only my lower digestive tract, but also everything else below my waist.   I’m sincerely hoping that this particular side effect is the first to remedy itself, and I’m sure Gregg shares this sentiment.

Mind you, Gregg hasn’t articulated any of this to me.  He’s been keeping his feelings to himself in typical Gregg fashion. I’m guessing he doesn’t want to “burden” me, so I’m relying of my wifely intuition right now.  After more than 20 years together, I’ve earned the right to make a few assumptions about his state of mind. 

I just hope he knows, (and he will after reading this) how amazing I think he is and how much I love him. 

Do I Dare to Eat a Peach?

Anyone who survived AP English with Mr. Andersen in 1987 should recognize the title of this post as a line from T.S. Eliot’s poem, “The Love Song of J. Alfred Prufrock”.  I will readily admit that the piece baffled me in high school, and I’m no closer now to understanding this stream of consciousness “masterpiece” of modern poetry.  Today, there is no symbolism to uncover or metaphor to interpret; unlike Eliot, I ask myself this question in a strictly literal manner. 

The answer to the question is a resounding NO!  I do not dare eat a peach or any other fruit for that matter for fear of the pain it will cause when it passes through my lower digestive tract.  The radiation proctitis and prolapsed hemorrhoid I wrote about a few weeks ago have not yet released me from their grip.  I still am, in the words of my niece, a “fire butt”, and I’m afraid I will remain so for at least a few more weeks.

Therefore, fruit is out of the question.  My doctor recommended a “low residue” diet to help minimize the “discomfort”, as he calls it.  I did a little research to figure out what the heck “low residue” meant.  Simply put, residue is any food, including fiber, which remains undigested in the large intestine.  In other words, residue = poop.  I suppose doctors prefer to use this euphemism because it sounds more clinical.  I can’t imagine any doctor recommending a “low poop” diet.

Most low residue foods are highly refined, processed carbohydrates. They are easy for the digestive system to break down and absorb; therefore, they leave less residue behind. While I understand the need for such a plan of eating, I am finding it very difficult. I have spent the last 3 ½ years eliminating refined and processed foods from both my diet and that of my family.  Until a few weeks ago, you’d could not find refined bread, pasta, rice, or grain in my house.  Now, it’s just about all I can tolerate, even though it goes against everything I believe about nutrition.

Even the kids are confused.  When Gehrig saw me putting Rice Krispies and white flour bagels in the grocery cart, he looked at me with concern and said, “Mom, we don’t eat that food; it’s not healthy.”  It wasn’t easy to explain to my 5-year old that Mommy has to eat unhealthy food because she is sick.  Even a child can recognize how counterintuitive this all seems. (Though, both kids are enjoying the Rice Krispies.)

The most difficult part of this for me has been the elimination of fresh fruits and vegetables.  It’s summer; the time of year that I love to frequent my farm stand and enjoy the bounty of local produce.  This year I cannot.  I long for a ripe peach or nectarine, crave a fresh crisp salad with juicy ripe tomatoes, and pine for the flavor of sweet summer corn.  This whole experience would have been much easier to handle in February.

I have one more week of therapy left.  With a little luck, in the 6-8 weeks between the end of radiation and my surgery I will heal enough to enjoy some of the summer season’s delicious gifts. If not, there’s always next year.

Ya Gotta Believe (sort of)

The refrain from Bon Jovi’s “Living on a Prayer” has been running through my mind for several days.

“Whoa, we’re halfway there

Whoaaa, living on a prayer”

This morning I had my 16^th radiation treatment.  I’m officially two treatments beyond “halfway there”.  What’s interesting is my focus has not been on the first line of the lyrics.  Instead, my mind is mulling over the idea of “living on a prayer”.   I’ve spent a good part of the last five weeks contemplating what it is I truly think about God, religion, and the power of prayer.  Nothing like a good cancer scare to make someone examine his or her faith.

The thing is, I’m 42, and I’m still not sure what I believe.  I’ve been searching most of my life for a faith I can grasp with my heart and my mind, and thus far, I’ve come up short.  I suppose, on a fundamental level, I have a sense of some kind of God, but I have trouble maintaining any sort of consistent personal connection.

I was raised in a “Jewish” home, but never given any foundation on which to build a belief system.  My knowledge of Judaism consisted of the following basic ideas:

We faced adversity and persecution.

We overcame adversity and persecution.

Let’s eat.

Name a major Jewish holiday, and I will tell you the food associated with it.  I remember conversations about the Bar Mitzvahs of my cousins; they focused less on the Torah and more on the Viennese dessert table at the reception. 

My ignorance was not limited to my own “faith”. Once, when I was about eight, I returned home from a sleepover with exciting news. The night before, my friend’s parents read us a story from the “New” Testament.  I couldn’t wait to tell my mom that there was a new bible!  We only had the old one, and I wanted her to go out and buy the new one!

In my 20’s, I thought I found the faith I was seeking in Catholicism. After a year of weekly classes, I experienced baptism, first communion, and confirmation in one fell swoop during an Easter Vigil.  After moving away from NJ, I realized that it was my husband’s parish and not Catholicism that brought me a sense of peace and belonging.  I mistook the warm embrace of a wonderful church community for the serenity one can find in a real connection with God.  So, once again I find myself searching. This formerly non-practicing Jewish girl is now a non-practicing Catholic, and I’m no closer to understanding what I believe.

I admire the people in my life who possess a real certitude of faith.  My friends and family run the gamut from devout Christians and Jews, to confirmed atheists and agnostics.  There are even a few Pastafarians in the mix. (They believe in the Flying Spaghetti Monster. Google it if you are unfamiliar.) Regardless of what they believe, I envy their ability to embrace their chosen faith without doubt. I want the peace that comes with that kind of conviction, but it eludes me.

I’ve spent several years in 12-step recovery dealing with my compulsive eating disorder.  The core of my recovery lies in accepting my powerlessness and turning my life and will over to a “Higher Power” (God) of my understanding. I know that the greatest obstacle to my recovery has been my inability to embrace any sort of “Higher Power” without reservation.

I want to believe.  I look back on my life thus far, and I get a sense that events have happened for a reason.  Disappointments have led to greater good fortune, which makes me think there is some larger force directing my life.  We did not want to leave Oak Harbor in 2003; however, moving away led us to the people who helped create our family.  Gregg’s departure from aviation was a bitter pill to swallow, but it led to greater opportunities for both his career and our family.  For some reason, I only seem to recognize God in hindsight, and even then, I wonder if my “faith” is nothing more than an attempt to assign meaning to random coincidences as a way to make sense of my life.

Now, as I continue my fight with cancer, I find my sense of faith waxes and wanes.  Most days I’m convinced that this journey has a purpose beyond my understanding, and one day I will comprehend why I was chosen for this particular battle. Other days I cannot accept that my disease is anything more than the result of a lifetime of poor dietary habits and lousy genetics.

Gandhi once wrote, “Faith is not something to grasp, it is a state to grow into.”  I guess I thought by the age of 42, I’d be done with growing pains.

Ring of Fire

My last few blog posts have been of the philosophical musing variety.  This one…not so much.  If you believe reading about the problematic digestive issues that accompany colorectal cancer therapy is TMI, you should probably stop reading now.

We have a chiminea on the back deck.  The previous owners left it behind. It’s a terra cotta fish, and its mouth forms the bottom opening, while its tail sticks straight up in the air.  When Gregg first lights a fire, flames shoot out of the tail.  Our kids delight in roasting marshmallows over what they call the “flaming fish butt”.  My current situation has left me feeling a certain kinship with this fish.

My butt is also “flaming”.

I had my 10^th dose of radiation this morning, and it’s beginning to take its toll.  While the radiation is shrinking the tumor, it’s also given me a case of “radiation enteritis and proctitis”, which is medical lingo for “your ass is now a flame thrower”.  The therapy is cooking the heck out of my lower digestive tract. Everything I eat must pass through a radiated gauntlet of fiery fried flesh, before it can exit my body.  Even the passage of gas elicits an excruciating burn beyond anything I’ve ever experienced.  I told Gregg the burn is so intense, I’m shocked the wind I expel doesn’t smell like barbecue.

But wait, there’s more.

When the remnants of my digestive process find their way out of the blistering channel of my rectum, they encounter a second angry adversary.  I have a hemorrhoid.  I only have one; it was the first gift my children ever gave to me.  Trust me; one is more than enough.  I swear, if this bugger grows any larger, I’m going to have to name him. (Yes, I’ve chosen to personify this painful protrusion as male.)  He’s stubborn, ill tempered, and he suffers from an acute case of “roid-rage”.

I know that I could be far worse off.  I’m one-third done with radiation and chemotherapy, and these are the only side effects I've experienced. (I suppose, I should call them “backside” effects).  Still, if things are this painful after 10 doses of radiation, I’m afraid to imagine how I might feel after 15, 20, or 25. 

I’m working with my oncologist to try to manage the situation. He gave me a list of low residue foods that may ease the irritation. I’m only on day two of this new “diet”, so we’ll see if it helps. I’ve stocked up on a variety of topical medications that provide a small measure of relief.  I’ve also learned that if I extend my left leg in the car and lock my knee, I can keep my bottom off the seat while I drive.

I’m at a loss for a clever way to end this post.  Unfortunately, my ability to sit here and think about it is limited.  It’s time for me to stop writing and go find an ice pack. 

42

Yesterday was my 42^nd birthday.  I’ve been looking forward to being 42 for quite some time.  Anyone who’s read Douglas Adams can understand why.  For those of you unfamiliar with his body of work, let me offer a bit of explanation.

Douglas Adams is the author of a 6-book “trilogy”, of which “The Hitchhikers’ Guide to the Galaxy” is the first. (He didn’t actually write the sixth book, but that doesn’t matter.)  These books are of the comedy science fiction genre. They follow the adventures of a man named Arthur Dent, who finds himself adrift in the galaxy after the earth is destroyed.

Early in the first book, Arthur learns that a race of “hyper-intelligent” aliens designed a supercomputer to calculate the “Answer to Life, The Universe, and Everything.” This computer, after seven and a half million years of calculation, announced that the “Answer” was in fact 42.  Unfortunately, the answer had no question to give it meaning, so the aliens created the earth to determine the question.  After 10 million years, just minutes before completion of the program, the earth was demolished by an intergalactic bulldozer to make way for hyperspace bypass. (I guess road construction on the Capitol Beltway isn’t so bad after all.)*

So, you see, I viewed my 42^nd birthday as the beginning of my year to understand the meaning of my “life, the universe, and everything”.  In some small recess of my mind, this was going to be the year I finally figured everything out and became comfortable in my own skin  Until last month, cancer had no place in this scenario. This was to be a year of self-discovery and newly defined purpose, not a year of chemotherapy, radiation, and surgery. This whole cancer thing really took the wind out of my sails…at first.

In the month between my diagnosis and my birthday, I’ve accepted the reality that my journey of self-exploration will be far different from the one I initially envisioned.  Just as the earth met its end by some arbitrary outside force, the world I knew before cancer is equally gone. Like Arthur, I must navigate through a new universe to find answers and ensure my survival.  I choose to believe that my adventure, while scary, will lead me to the resolution, purpose, and peace that I seek.

*Thanks, Wikipedia for help with the synopsis.

Cell Mates

The patient lounge area in a radiation oncology office is an interesting place.  There is a unique camaraderie among people waiting for their daily dose of gamma rays. I liken the dynamic to what one might find in the holding cell of a prison (minus the fear of rape or other bodily harm, of course).  Our jail is not made of concrete and iron bars.  The cells that incarcerate us are comprised of damaged and mutated DNA. They are invisible to the naked eye, but hold us captive just the same.

Like inmates, we do not wear our own clothes.  Instead, we sit there in the ill-fitting, oddly colored institutional uniform known as a hospital gown.  Then, the inevitable questions begin:

·         “For what kind of cancer are they treating you?” (“What are you in for?”) 

·         “What does your treatment protocol entail?” (“How long is your sentence?”)

·         “Is this your initial treatment experience?” (“Are you a first time or a repeat offender?”)

·         “What’s your prognosis?” (“Do you stand a chance of parole or are you in for life?”)

The old timers share tips with the newbies to help their time go smoothly.  I was a recent recipient of such counsel.  Most mornings I wait with a gentleman whom I will call Hank (not his real name).  My best guess puts Hank in his early 60’s, and he calls me “kid”.  He’s undergoing treatment for esophageal cancer, and has a tumor where his esophagus meets his stomach.  He’s a year into his “sentence” and doesn’t expect a release anytime soon.  Hank is gruff, but sweet; the kind of guy you’d describe as “crusty” if he were a Navy Chief.  Though, when I told him about my promising prognosis, he grew a little wistful, like someone facing hard time might feel when meeting the recipient of a full pardon.

Hank has shared the following pearls of wisdom with me:

·         Demand a port (a small medical appliance installed beneath the skin. A catheter connects the port to a vein) to avoid the constant barrage of needles required to withdraw bodily fluids and insert various poisons (chemo).

·         If I can’t get a port, avoid a “certain” lab technician, who can’t seem to find a vein on the first stick to save his life.

·         If I feel nauseous, eat bananas.  They won’t settle the nausea, but they are one of the least repulsive foods to regurgitate, because they taste the same coming up as they do going down. (I didn’t have the heart to tell Hank that I learned that lesson from Gregg when he was in flight school.)

Hank is nearing the end of his radiation treatments.  I probably won’t see him again after this week. I plan to thank him tomorrow morning and let him know his advice hasn’t fallen on deaf ears.  

I hope to one day see him on the “outside”, beyond the confines of cancer, walking free.