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.