The Night Before the Rest of My Life

I’ve been struggling to write a blog post for the last few days.  My difficulty does not stem from a lack of words, but rather an overabundance. So many different things are spinning around in my head, and I can’t seem to wrangle them into any sort of coherent form.  Being OCD – rather than write in a disorganized way, I’ve chosen lately not to write at all.

Here I am, 9 hours from surgery, and my thoughts are as jumbled as ever.  I no longer have the luxury of putting a post off for another day.  So, ready or not, here it comes.

I’m excited. For the last 162 days, I have lived with the reality that I have cancer in my body.  I’m thrilled at the prospect of waking up after surgery tomorrow to a new reality. I know this new reality will be difficult. I will be in the hospital for 5-7 days; I’ll be in pain; I’ll be adjusting to living with an ileostomy; and I’ll have four months of chemotherapy on the horizon. I’m ok with all of this, because with a little luck and the skill of a good surgeon, cancer will no longer live inside of me.

I’m scared.  I know that I am in excellent hands at Hopkins, and this procedure is not particularly risky, but still it was hard to kiss my kids and tuck them in tonight.  We read an extra story together, and when they got out of bed for more hugs and cuddles, my heart melted. My greatest fear is leaving them or causing them any sort of heartache.

I’m grateful.  I have discovered in the last five months how truly blessed I am with family and friends who love and support me.  As I type this, my mother-in-law is asleep downstairs.  She arrived this afternoon, with Gregg’s dad behind her toting a bed in his truck. She’ll be here with us for the next week, taking care of Addie and Gehrig and giving me peace of mind during my hospital stay.  My sister arrived 5 minutes ago.  She’ll stay through the weekend and then return in a week to help me, when mom has to go home. My friends and neighbors here in Maryland have arranged to get Addie to ballet class and Gehrig to soccer practice. When they tell me to call any time for anything, I know their words are not hollow.  I’ve lost count of the calls and messages I’ve received this week.  Each one has buoyed my spirits and touched my heart.

I’m concerned.  Tomorrow will be a very difficult day for the people I love the most.  My part is actually the easiest one.  I’ll be unconscious for the whole thing.  Gregg, mom, my sister and everyone else has to wait it out the hard way.  I pray that the day goes quickly for everyone, with a minimum of anxiety for all. 

On a lighter note, I’m hungry. Forty-eight hours of nothing but clear liquids and Jell-o is a special kind of torture, especially for someone who turns to food for comfort in times of stress.  I have a feeling that it will be a while before I get to chew anything again, though with the narcotics I’ll be on after surgery, I doubt I’ll care. Right now, however, I’m ready to chew my arm off.

That’s all I’ve got for now.  I hope to be writing again in a week or so.  Love to all and thanks for all the wonderful support during my journey.

Scanxiety Attacks

Again, I have been remiss in keeping everyone up to date.  It's been a busy month of houseguests, earthquakes, hurricanes, and back to school.  I'm glad to report that we have emerged from this craziness no worse for wear.

I've have also had several doctor's visits since my last post, so here's the latest from my adventures in Cancerland.  

Last month I shared that my last MRI indicated a lesion near my bladder that required further testing.  I had a Pet-CT scan last week.  The scan itself is no big deal.  Drink some yucky stuff, wait an hour or so, and them lie still on a table for about 40 minutes.  The tough part is waiting to hear the results.

For me, the time that passes between having  a scan and getting the results seems interminably long, even though it's normally only a day or so.  Logic dictates that, at this point, the results will most likely be positive.  After all, I have what's considered a very slow growing kind of cancer, and since my last Pet-CT scan, I've undergone chemotherapy and radiation. Still, I worry.

I was especially anxious to find out more about this bladder / ureter lesion.  Although my doctor told me that colon cancer rarely metastasizes to the bladder, there was always the chance.  So, of course, my brain focused on the small possibility of a totally devastating outcome.  I kept imagining the doctors looking at my scan and seeing  cancer illuminate my midsection like some strange abdominal Lite Brite®.  It's days like these that I can understand why some people turn to Valium or Xanax.  I would have loved to find some way to turn my brain off for a few hours.

Fortunately, I was delivered from my anxiety early the next day.  The Pet-CT scan showed that the colorectal tumor is significantly smaller, and more importantly, there is no indication of cancer near my bladder.  Whew!!!

Bolstered by that wonderful news, I met my urologist (who I just learned is also an oncologist) this past Tuesday and expected him to confirm that all was well with regards to my bladder and ureter.  Unlike me, however, Dr. B. was only cautiously optimistic.  It seems the Pet-CT scan wasn't enough to convince him that I was in the clear.  He wanted me to have a regular CT scan with contrast to get a better look at things.  Sigh...more scans.

On the bright side, he sent me to radiology from his office, and within 40 minutes I was on a table with dye coursing through my body.  The doctors at JHU really know how to get things done. After the scan and some blood work, I was sent home to wait...again.  Dr. B. promised to e-mail the results as soon as he could.

Dr. B.  is a man of his word.  By 10:00 the next morning, he sent me a message that included the following:

"CT Urogram shows normal appearing kidneys, ureters, and bladder. The soft tissue lesion is non-enhancing and honestly doesn’t look like metastatic colon cancer."

He also wrote regarding my surgery:

"I will communicate [to Dr. E.] and obviously I’ll be around if needed but doesn’t look like it."

I'm taking this as a definitive result that my cancer has not spread.  If any new doctor doubts this and wants me to undergo more testing, I'm going to pull out my laptop and show him Dr. B.'s e-mail.  As far as I'm concerned, this issue is finished!

Well, maybe not completely finished...once I have my surgery on October 14th, then it will really be done.  Until then, however, NO MORE F*#%ING SCANS!!!

Back to Reality

I’ve been avoiding this blog of late, and I’m still strangely reluctant to write this evening.  It’s not for a lack of things to write about; there’s plenty going on right now.  I suppose I haven’t wanted to write, because I’ve spent the last 6 weeks trying to enjoy my summer and put all thoughts of being sick out of my mind.  It’s hard to write about my experiences with cancer, when I’m desperately pretending it is not a part of my life.

Of course, I can never really forget.  While I haven’t had any official treatments since the end of June, little things keep popping up to remind me that all is not well. My generous daughter shared her impetigo germs with me. Normally this would amount to nothing, but with my less than optimal immune system, it gave me a nasty little staph infection. I can now add “boils on my buttocks” to the master list of things I’d never hoped to experience. After two weeks of antibiotics, the infection is much improved, but still not gone.  I’m starting my second round of antibiotics tomorrow to try to kick it. 

Another interesting reminder is the increasing frequency of hot flashes.  In my mind, some sort of lingering radiation power surge in my body is causing my face to flush and burn at random moments throughout the day. In reality, the radiation therapy probably jump-started the early stages of menopause.

An additional constant reminder is fatigue.  Most mornings I have reasonably good energy, but by about 3:00 each afternoon, I’m spent. Last night, Gregg “sent” me to bed at 6:30, and I slept for 14 hours.  I know that I’ve written of my love for sleep, but even I know that 14 hours is a bit much.

Therefore, I must admit my efforts to hide from cancer this summer have been fruitless.  In addition, my reluctance to write has left many friends and family members in the dark about how I’m doing.  I’m sorry about that.  I’ll endeavor to post more often in the weeks to come.

Now on to some important updates…

I posted last month about seeking a second opinion from doctors at Johns Hopkins (JHU).  It took about two weeks to get all of my records faxed to the correct people, but once I cleared that hurdle, things began to happen.

First, the doctor at JHU sent me for an MRI.  This surprised me, because my current surgeon told me a scan at this point was not necessary.  He reasoned that regardless of the scan’s results, he’d be removing my entire rectum, because of the damage sustained from the radiation.

Going to JHU last Monday for the MRI was quite an experience.  There’s this energy at Johns Hopkins that I can’t quite explain.  It’s as if the place hums with positive vibes.  There are banners all over the place that celebrate 21 straight years of being the best hospital in the country.  Framed enlargements of the covers of US News and World Reports from the last 21 years line the long hallways.  I half expected a nurse or doctor to greet me waving a giant foam finger and shouting, “We’re Number 1!”  (This would not be a good thing.  At this point in my life, any form of giant finger is very, very bad.)

On Wednesday, I met with the surgeon at JHU (whom shall hitherto be referred to as “Dr. E”) to discuss my options.  His thoughts were similar to those of my original surgeon, and he made the same surgical recommendations.  This did not surprise me.  My intent was never to find a kinder, gentler option.  My mom, when given a choice of treatments for the melanoma, opted for the less invasive procedure.  Less than a year later, she was gone.  I don’t know that choosing the other option would have saved her life, but I do not intend to take any chances.

Dr. E had some other news as well.  The MRI indicated a lesion on my bladder.  The likelihood that this is some form of metastasis is very small.  Colon cancer generally spreads to the liver or lungs; it rarely metastasizes to the bladder.  This is most likely a lymph node enlarged from exposure to radiation.  While Dr. E is not overly worried, he still thinks the lesion warrants some attention.  He’s contacted a urologist (Hitherto known as Dr. B), and he’s setting up an additional Pet-CT scan. 

I realized that had I not gone for this second opinion, the lesion on my bladder would have gone unnoticed.  I asked Dr. E what he thought about this, and he explained that not doing a scan after treatment was actually “standard procedure”, but he did not always agree with the standard.  I guess that’s one reason this is the best hospital in the country.  It was at this point that I knew for sure I was sticking with JHU.

Now this whole bladder thing complicates matters a bit.  When I have the colorectal surgery I described in an earlier post (July 13), I will also undergo surgery to remove the lesion from my bladder.  Depending on its size and location, this can be either a simple or a complex procedure.  They won’t know for sure until Dr. B opens me up to have a look. 

On the bright side, whatever it is on my bladder, it’s coming out, and Dr. E is still using the word “cure” with regard to my cancer.  On the down side, they no longer have the option of using the location of my previous C-section as the incision point.  The combination of bladder and colorectal surgery requires that they cut me open from stem to stern.  While I hold no illusions about ever wearing a bikini again, the larger incision requires more time to heal and increases the possibility of infection.  Still, I have faith that I’m in good hands.  Who knows, maybe I can get a plastic surgeon in there and get some liposuction done as well.

Coordinating with two surgeons is not easy.  My surgery will most likely take place in late September or early October.  Until then, I’m going to do everything in my power to improve my health and build my strength.  I figure, the healthier I am going in, the sooner I will recover from all of this nonsense.

Still Kicking...

Just a quick note…

I haven’t updated the blog for about three weeks.  My scarcity of words simply reflects that nothing significant has transpired.  The last three weeks have been relatively unremarkable, which is what I hoped my summer would be.  I enjoyed a week at the beach with my family, and, for the most part, relegated all of this cancer nonsense to the far recesses of my mind.

I’m happy to report that I am free of pain.  The horrible effects of June’s radiation therapy are nothing more than a bad memory.  I definitely have a new appreciation for life without pain, and I hope to never again take it for granted.

I had my first experience at Johns Hopkins yesterday, when I went for an MRI.  I’m meeting with a new surgeon tomorrow to discuss the results.  I’ll write more in the next few days to let everyone know what’s going to happen next, and how the process of switching hospitals has panned out.

Rescue Me

First, a story…

One day in a small town, the weather forecast predicted heavy rains and floods.  Authorities urged people in the area to evacuate.  Emergency crews went door to door making sure that everyone knew to get out of town.

The crews came upon a farmhouse and encountered an old man who refused to evacuate.  He had faith that God would save him.  No amount of argument could convince him otherwise, so the crews left.  The next day, the rains came.  Soon the floodwaters were up to the first floor of the old man’s home.  He climbed to the second story and looked out the window to find a rescue boat coming to save him.  Once again, he refused to leave and reiterated his faith that God would save him.

By the next morning, the water was up past the second floor, and the old man was sitting on his roof.  A helicopter came along and lowered a rope ladder for him to grab. Still, he rejected the offer of help, for he knew that God would save him.

Later that afternoon, the old man drowned.

When he entered through the gates of heaven, he asked to speak with God. He asked God why he didn’t save him, a man with faith as strong as his.  God replied kindly, “My child – I sent an emergency crew, a boat, and a helicopter.  What more did you want?”

I love that story.  I first heard it as part of a homily years ago; when I thought I was Catholic.  It stuck with me all these years, and often serves as a reminder to stay aware of the opportunities and messages the universe sends my way.

Today the universe sent me a boat and a helicopter.

I was reading an old magazine while waiting to get blood drawn this morning.  I came across an article about how to be a smart patient.  The article strongly urged anyone facing a major procedure to seek a second opinion.  An inner voice started whispering.  I like my surgeon, but he does want to remove my entire rectum.  That’s a pretty major procedure in my book. 

Then, a different inner voice spoke up (yes I have more than one inner voice; doesn’t everyone?) This voice reasoned that surgery was already scheduled and seeking a second opinion was akin to a lack of faith in my current surgeon.  The second voice stifled the first, and quashed my thoughts of a second opinion.

I came home and hopped onto the computer.  My home page greeted me with a headline about US News and World Reports rankings of America’s best hospitals.  Number one for the 22^nd straight year is Johns Hopkins University Hospital (JHU).  I live fifteen minutes from this award winning hospital, but my current surgeon works with Baltimore / Washington Medical Center (BWMC).  I decided to see where my hospital fell in the rankings.  I learned that BWMC is not nationally ranked, and it’s number 13 of 31 hospitals in the Baltimore metro area.  I also discovered a below average rating for patient safety.

Suddenly, my initial inner voice jumped up and dropped kicked the other from my head.

I called my insurance company and inquired about coverage for a second opinion and accessibility to JHU.  I was pleasantly surprised to discover that second opinions are covered and JHU is affiliated with my insurance provider.

Contacting JHU made me feel like I was cheating on my current surgeon.  Then I called my surgeon’s office and asked them to fax my records to JHU.  I expected a negative reaction to my “infidelity”, but the staff was very kind.  They understood something I had yet to grasp.  This isn’t personal to them.  Seeking another opinion doesn’t hurt their feelings.  I’m just another patient trying to find the best possible care.  It would be foolish to turn away from a chance to be treated at the best hospital in the country. 

JHU will call me back next week for a consultation.  Unlike the old man in the flood, I have every intention of accepting any opportunity that increases my chances for recovery.  Boat, helicopter, whatever it is…I’m climbing in.

Detours

You have my apologies for the lack of posts over the last few weeks.  There hasn’t been much news to share, and life has been pleasantly busy. Casa Dewaele is open for the summer season, and in the 12 days since my last radiation / chemo treatment, we’ve had friends and family visiting from Thailand, Hawaii, and Massachusetts.  The house is empty until Saturday, when we look forward to more family visiting from the West Coast and the Northeast.  I’m thankful that my cancer is not interfering with all of this.  I’m happiest when my house is full of the people I love.  An added bonus is that as each day passes, I feel a little bit better.  I’m no longer in significant pain.  I still have moments, but for the most part, I’m only experiencing tolerable discomfort. 

With everything moving in such a positive direction, I’d begun to think that the worst of this experience was behind me (no pun intended).  I’m sorry to say, I met with my surgeon today and learned this is not the case.  Be warned, there is no polite way to explain what’s going to happen next.  Squeamish readers should continue at their own risk.

I walked into the doctor’s office hoping to hear words like “laparoscopic”, “minimally invasive”, and “quick recovery”.  Unfortunately, Dr. Cifello’s vocabulary was much less pleasant.  Here’s the plan…

In September, I will literally “kiss my ass, goodbye”.  Dr. C. will surgically remove the tumor along with my entire rectum.  That’s right…the whole damn thing.  He explained that this was the best course of action to avoid a recurrence.  Then he will “create” a new rectum from the lower part of my large intestine.  As he explained this, I heard the theme music from the Six Million Dollar Man playing in my head, and I couldn’t help but think, “I’m going to have a bionic ass.”

The most unsettling part of this whole thing comes after the surgery.  It’s going to take time for both my colon and my new and improved rectum to heal. This means they will be temporarily out of order, and my body’s waste will require a different exit.   This disturbing detour is called an ileostomy.  For anyone who may be wondering, an ileostomy is an opening in the abdominal wall, and the end of the ileum (the lowest part of the small intestine) comes through this opening to form a stoma, usually on the lower right side of the abdomen. Digestive contents leave the body through the stoma. The drainage collects in a pouch that sticks to the skin around the stoma.  This is truly a special kind of EEEWWWWW!!!

Normally, the surgeon will reverse the ileostomy in a month or two, once the colon and rectum have healed.  However, as usual, I’m far from normal.  A month after surgery, I start my next round of chemotherapy.  Dr. C. doesn’t want to reconnect everything until my chemo is finished, so I’m looking at about 6 months of living with a poop pouch stuck to my stomach. 

Of course, the key word in the previous sentence is living.  I’m holding tight to the notion that every mortifying moment of this experience is necessary to save my life.  No matter how gross and undignified it may be, if this is what it takes to see my kids grow up and live a long, happy life with Gregg, I say bring it.

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.

Fear Not

For most of my life, fear has owned me.  Only in the last year or so, with the help of a good doctor and modern pharmaceuticals, have I evicted fear from its permanent residence in my thoughts. I’d like to think that this comes as a surprise to most of you.  I’ve spent years cultivating a persona of confidence and self-assurance to mask my insecurities.

I have lived my life expecting bad things to happen.  In my mind, recognizing and embracing all that is good in my life summons a sort of cosmic bitch slap to put me back in my place.  I come from a long line of cautiously pessimistic thinkers.  My grandmother could never offer a word of praise without the fear of “giving me the bad eye”.  In my family, “knock on wood” follows almost every proclamation of good news.  Whether you see it as superstition or a lack of faith, it’s a lousy way to live.

Even Gregg has not escaped my irrational apprehension that one day he will wake up and realize he could easily find a better, smarter, prettier, thinner, less neurotic wife.  For twenty years, I’ve been waiting for the proverbial other shoe to drop, while Gregg continues to assure me that whoever is watching over our marriage only has one leg, so there is no other shoe.

I’m sharing all of this because what I’m about to say scares the hell out of me:

I feel good. (Knock on wood)

Yes, I really knocked on the table after typing that.  I’m five treatments into radiation and chemotherapy, and I feel really good.  I’m not talking about tolerating therapy or managing despite what’s going on.  I actually feel better now than I have in months. (Knocking again)  I’m sure this sudden flush of energy is the result of several factors.  They gave me an iron infusion last week; I’ve been taking substantial doses of vitamins C and D, as well as sublingual B-12; and for the first time in months, I’m not passing blood.

Unfortunately, fear still lingers.  It may not live permanently in my psyche, but it still has a vacation home there.  Fear tells me that this cannot last.  The cumulative effects of radiation are just around the corner.  The ugly side effects of chemo are going to ambush me when I least expect them.  People with cancer aren’t supposed to feel “good”.

I hope that articulating the irrational notion that enjoying the good somehow invites the bad will release me from its grip.  I suspect that it won’t.  Still, I feel a bit lighter having shared this.  I think, for tonight at least, fear will be lodging somewhere else.

(Knock on wood)

The Early Bird...

My first week of radiation and chemo is over.  I’m pleased to report that it hasn’t been horrible.  The side effects thus far have been minimal.  The only issue I seem to be having is fatigue, although I don’t think I can totally blame the radiation for my lack of energy.  It's partner in crime is the obscenely early time I must wake up, because my appointment is at 6:30 am each day.

Anyone who knows me well will question my decision to willingly schedule something at such ridiculously early hour.  To say that I am not a morning person is understatement raised to the power of ten.  My husband springs forth from our bed each morning like Athena from the head of Zeus, fully armed with energy to face the day (though I don’t think Athena wore boxer-briefs).  I, on the other hand, am usually roused against my will and long for nothing more than a return to the blissful slumber from whence I came.

I’ve been having a love affair with sleep for my entire life.  I yearn for it, crave it, and no matter how much of it I get; I still want more.  I take pleasure in long uninterrupted stretches overnight, but I’m not above a quickie on the couch in the middle of the day. I’ll take it any way I can get it. I guess I’m the Sam I Am of snoozing – I can slumber in a plane; I can slumber on a train; I can slumber here or there; I can slumber anywhere!

So, why did I choose to schedule radiation so early in the day?  I approached the decision practically and made a list of pros and cons.

Pros

·         I can be done and home before Gregg leaves for work and before the kids wake up, which eliminates the need for childcare.

·         It’s the first appointment of the day, so I don’t have to worry about the staff “running behind schedule”

·         It frees up the rest of the day, so I don’t have to plan activities around yet another doctor’s visit

·         All the good parking spots are open

Cons

·         I have to wake up at FIVE freaking FORTY every day.

Therefore, as much as I abhor getting up early, I know it’s the right thing to do for both my family and me.  Fortunately, sleep is a forgiving and patient paramour.  It will wait for my return and welcome me into its embrace no matter how early I abandon it each day.  Sleep will willingly join me in afternoon liaisons whenever I can find the time.

I suppose if my biggest complaint at this point is the early morning wake-up, things must be going pretty darn well.

Though I still believe the early bird doesn't know what he's missing.

Cruel to Be Kind

I’ve had 1984 on my mind today. Not the year mind you, but the novel. I suppose there would be no harm in spending the day thinking about parachute pants, big hair, and The Brat Pack; however, Orwell occupies my brain space today. 

My thoughts keep returning to Big Brother’s ever-present contradictory doctrine:

WAR IS PEACE
FREEDOM IS SLAVERY
LOVE IS HATE

Like Winston Smith, I too have been forced to accept a strange paradoxical tenet:

POISON IS CURE

I started chemotherapy and radiation today.  My pharmacy ordered my meds, but they won’t be in until tomorrow.  The oncology staff managed to find some samples, so as not to delay the start of treatment any longer.

The nurse gave me the large sealed plastic bag pictured below:

Inside was a second sealed plastic bag, which contained a third sealed plastic bag.  She also handed me a full box of surgical gloves.  She explained that I should wear the gloves when handling the pills, because they are toxic.  Um…yeah, hold on here.  I can’t touch the pills because of their toxicity, but you want me to put them in my mouth and swallow them?  Does anyone else see the absurd oxymoronic nature of this scenario?

To make matters more complicated, the kids were home when I had to take my first dose.  I should have hidden in the bathroom to avoid the inevitable questions, but I was a little too lost in my own thoughts about swallowing this stuff.  My ever-inquisitive son wanted to know how a pill could be poison to touch, but not poison to eat. 

How could I tell him that I was wondering the same thing? 

New Moon on Monday

A brief warning for the faint of heart: the following commentary contains potentially disturbing descriptions. Continue at your own risk…

Today I spent a little less than 3 hours playing “upstairs / downstairs” with my radiation and medical oncologists. I wanted to get my blood drawn before my 9:30 radiation run-through. Needles give me anxiety, and I fully expected the labs to be the worst part of my morning. I walked into the second floor medical office at 9:00.  I quickly learned that on a Monday morning, the wait for the lab is significantly longer than 30 minutes.

Note to Self #1 – Set aside at least ­one full hour for required Monday morning blood work.  Set aside two hours on the Tuesday after Memorial Day.

So, down I went to the first floor radiation office, where they inquired about the status of my chemo meds.  I explained that my pharmacy did not stock them, and planned to ask the medical staff to order them for me when I went upstairs later for my labs.  Guess what; my plan was flawed.  The radiation staff told me to go back to medical right away, so their staff could start the process required to get my meds to me.   I went up, submitted the request, and came back down again.

Note to Self #2 – Wear comfortable shoes to all oncology appointments.

Back down in radiation, my nurse practitioner informed me that the doctor needed to speak with me before my appointment with the technicians.  I was ushered into an exam room and left to wait with nothing for company but my own neuroses.  In less than 10 minutes, I had myself convinced that something was horribly wrong.  By the time a nurse popped in to apologize for the delay, I was a mess.  When I asked her if she knew why the doctor needed to see me, she explained that he just wanted to “touch base” and see how I was feeling. 

Note to Self #3 – Stop assuming all news is bad.  You are your own worst enemy.

Moving on to my appointment with the technicians, the real fun was about to begin.  It was time for x-rays and my final mark-up for radiation. I lay prone on my stomach on a table, my hips slightly elevated. One blanket covered my back; another covered my legs, leaving only the area between them exposed. Not the most dignified position, to be sure.  I just took a deep breath and reminded myself that this indignity was necessary to save my life.  When I think about it that way, this awkward position, hitherto known as “downward facing moon”, doesn’t seem so bad.

The x-rays were routine and only took a few minutes; the final mark up, however, was definitely the strangest part of this journey thus far.  Two technicians began to mark my exposed skin with Sharpies. (At least I think there were two of them; I was face down at the time.)  You’d be amazed at what passes through your mind when total strangers are drawing lines and circles on your ass.  Here are a few of the random thoughts that meandered through my brain:

·         I wonder if these guys loved to doodle and draw with sidewalk chalk as children?

·         I can’t imagine any child saying, “I want to draw on butts and boobs when I grow up.”

·         Wow, my ass is way more ticklish than I thought it was.

·         Are they playing connect the dots?

·         I feel like a table covering at the Macaroni Grill.

Believe it or not, it gets stranger from here. 

When I finally made it back to the changing room to dress, I glanced at the technicians’ handiwork, which was an odd combination of blue and red lines, crosses, and circles. It looked like Pablo Picasso and Salvador Dali played a bizarre game of tic-tac-toe on my rear.  

Breathe in.  Breathe out. Move on. It’s time to go back up to medical for my labs.

While waiting for the lab, I decided to use the bathroom.  Never in a million years would I have guessed the most mortifying part of my day was about to occur.  Upon finishing what was necessary in the restroom, I stood to discover the red and blue lines had transferred from my bottom to the toilet seat!  I was horrified.  Frantic attempts to remove the ink were not successful.  I finally gave up, put the seat up, and walked out.  Something tells me I’m not the first patient to leave my mark in such a way.

Note to Self #4 – Tuck a Mr. Clean Magic Eraser into your purse for all future radiation appointments.

I’m glad to report the guys who draw blood are wonderful.  Single stick – in and out.  Go figure, getting stuck with a needle was actually the best part of the morning.  J