Friday, May 13, 2011

The Thing That Changed Everything

-may be disturbing to some readers

**Secondarily, this post has become extraordinarily long.  I have tried to edit things down, but decided that I wanted to post this as is.  It is important to me, but I understand if it goes beyond what you are willing to endure for a story.   What a day to post THE longest and most difficult post I've ever had, only to have it lost! (for a while)  Do I have timing or what?!**

About 7 years back I made some really difficult choices.  These choices are hard to explain and even harder to justify in some cases, but they were necessary.  I won't go into that right now.  I just wanted to find a place to start that seems to offer some sort of background as to what was going on in my world before I got to the moment that really did change everything...

So there I was, thinking that I was doing a pretty decent job of taking charge of my life and starting to actually live in a meaningful way.  After a couple of years of sort of readjusting my world, and over a period of about 5 years I went through a process that included clearing out that last level of clutter.  You know, the level you think you might never get down to.  The one that goes beyond any comfort level.  The one that includes not just physical junk, but a manner of cleaning out all types of psychological trash along the way.  I got rid of those 'friends' that weren't really true.  Let things that I thought were a comfort, but really just had me stuck in the past, go.  I started replacing those 'tapes' that rolled in my head with newer more positive messages.  I forced myself to try new things that I thought would never be 'me'.  (Not all of those things worked out so well!)  Overall, I decided that anything that was more of a negative than a positive in my life just simply had to go.  I was ready to admit to the life that I had really always wanted, no matter what anybody else thought, no matter how much outside of the norm I would be.  (Who the heck are those average Americans everybody is always polling anyway?  Nobody ever interviews me.)

It had been a beautiful sunny day.  My husband and I were in New York City.  New York has never been my favorite place, but we were showing 2 friends who had never even been away from the West Coast a thrilling time in the Big Apple.  We were on a trip that had been planned for months and we were going to see my husbands best friends brand new baby.  As we neared the home of the new parents we got a call from them asking if any of us had been sick lately.  Typical worried new parents!  But it was then that my husband admitted that he had not been feeling quite right all day.  In fact, he had been a little nauseous and bloated.  He thought maybe he had food poisoning or something.  His friend didn't want to take any chances so we ended up at a Walgreen's picking up an instant-read thermometer.  Everybody took their turn and we all checked out with normal body temperatures.  After all that, my husband decided that he was feeling better and the stomach pains had passed.  We had a lovely visit with the sweet new baby and it was so special to see such a proud Papa. 

After that, it was more sightseeing.  Experiencing nightlife in the Big Apple for the first time was so exciting for our friends.  Time passes fast in the 'City That Never Sleeps' and before we knew it we were about to miss the last bus out to get back to our hotel.  We barely made it back to the bus station and I noticed that my husband wasn't really keeping up with us.  That was just not like him.  It turns out they send more than one bus back for each line at the end of the night, so we waited for the second one rather than crowd onto the first bus.  As we sat waiting on a bench I realized that maybe there was something more than indigestion going on with my husband.  I asked him if he thought he should see a doctor.  He said he wasn't sure.  I immediately pulled out our medical card and got on the phone.  I found out that since we were traveling out of state, we should just go straight to an ER rather than try to find a clinic of some kind.  By the time the bus came, I was antsy to get back to suburbia so we could get to a hospital near our hotel room.

Our friends wanted to go with us to the ER, but I wanted them to get a decent nights sleep as we would be driving out to Connecticut to see my husbands sister early the next morning so they returned to the hotel while my husband and I went to the nearest hospital.  It turned out that there was a blue H sign right next to our hotel and we set out following a series of these.  After about 20 minutes of driving around, I realized that I was beginning to recognize the same landmarks all over again.  By this time we were both tired and I asked my husband if he thought we should just go back to the hotel and get some sleep before trying for the hospital again in the morning.  He said that he thought we could find it if we just tried a little bit more.  I knew then that something must really be wrong.  Just after that, we did find the hospital.  Somehow, it was right there in front of us with an empty spot right at the door to the ER.

I expected a long wait inside, but there was hardly anyone there.  The nice guy at the front desk noticed my panicked look and reassured me that if anything was really bad my husband would be 'doubled over in pain'.  He felt sure that we would be in and out in no time.  Next we were put into a large holding area type room with curtains drawn between patients.  It turns out we were not in the best part of town and there was actually a guy handcuffed to a bed with two police officers at his bedside and another that kept wandering around exposing himself to people.  After a little while, we got a little more relaxed and sort of enjoyed the people watching.  My husband went through the usual tests- blood, urine, physical exam and nothing came up abnormal, other than some loose stools.  His temp was normal just as it had been earlier in the day.  The doctor was pretty certain that he did indeed have a case of food poisoning or 'travelers diarrhea'.  My husband was given fluids as he was a bit dehydrated and was just about to be released when the doctor decided to do an x-ray of his abdomen, just to be sure since we were traveling and all.

The moment that x-ray was put up in front of the light on the wall, I didn't need any instruction to be able to see that something was very wrong.  The intestines were all distended and there was clearly something blocking the digestive tract.  Suddenly there was an immense urgency in the room.  Several doctors all stared at the x-ray as if they could not believe what they were seeing.  Then they began prepping my husband for an emergency CT scan and told me he would be going straight to surgery after that.  They also shoved NG tubes into his nose and started pumping out this awful fluid.  I couldn't even think.  The nurses told me to take any valuables as they had a way of disappearing around here and took me through a maze of doors so that I could see my husband just prior to his surgery. 

After the CT scan, my husband was wheeled into the room where I was waiting.  There was an anesthesiologist with him who was explaining that there was no time to wait for his stomach to empty and that they would have to intubate him.  We were told that this was very serious and that there was a mass in my husbands abdomen that was preventing the passage of normal digestion and that it could kill him if they did not remove it.  They were able to see that the mass was not moveable by any other manner via the CT scan and the intestines were so distended that they could rupture at any moment.  Naturally, I thought he must have colon cancer or something, but I did not ask about that.  All I wanted was for him to be O.K. for right now.  I just wanted a little more time with him.  I kept asking God or whoever would listen to my pleas inside my head for this to just NOT be cancer.  In my own selfish thoughts, I didn't think I could take that.  As my husband was moved into the operating room they let me stay with him until after they put him under.  I thought this was strange and heard one of the nurses tell the other to let me stay and have my goodbyes.  Then another piped up and said this was not goodbye.  She told me that the doctor they called in was the best and that if anyone could save my husband, he would.  I could not believe this.  How did I go from a bright day as a tourist to this?

I was led back out and left in a row of chairs in a daze.  I didn't know anything except that I was so glad that I was not alone.  I could call my friends.  They were just a short distance away.  During the planning of the trip there had been a time when we were going to be going to New York on our own, but fatefully our friends had decided to join us.  They came to be with me in a flash and didn't ask questions.  Somehow they both knew just what I needed in that moment.   After 4 long hours, a doctor came through the double doors.  He was a tiny East Indian man with such a gentle demeanor.  By this time I really had it in my head that I just wanted to hear that this was NOT cancer.  Sometimes the mind can get stuck on a stupid detail.  So there I was just begging for him to tell me that.  My wish was somehow granted.  There was no cancer!  But wait, how could he know that so soon?  How could he be so sure?  It turns out that when I got over the initial euphoria of hearing that there was no cancer, there was some other news that was a bit more sobering.  The doctor informed me, in his lilting accent, that "another 12 to 24 hours and I could not save him."  My mind went reeling again as this idea settled in.  What if we had decided to go back to the hotel and rest?  What if we had been back at home and decided to wait until Monday so we could avoid going to the ER?  What had just happened?  How did this happen?  

The doctor would answer the questions that he could in due time, but he wanted me to see that my husband was indeed still alive and much better than he had been only a short time ago.  A short time ago when none of us had realized that this was such a serious thing at all...  So I was taken into recovery and greeted by several doctors and nurses with huge smiles on their faces.  You could feel the relief in the room and we all shared a laugh as my husband started in talking about how it was very important for him to get back to work right away and that he needed to take care of things, in a very drugged out voice.  They told me he had been repeating that over and over.  Then the doctor finally started to explain to me what had happened.  It turns out the diagnosis would be truly unique and complicated.  My husband was found to be the one of a kind man that I know him to be, in every way. 

You really never know just how things in the universe line up as they do.  I just know that if I had ever doubted that there was a purpose and a meaning to this life higher than mere existence, all doubts left me that day.  This doctor had trained in India as an intensivist.  Then he had specialized in gastrointestinal surgery in the U.S. and had done most of his work with the elderly and more recently victims of gunshot wounds.  (In the daylight the neighborhood we were in was much more clearly NOT the good side of town.)  In all of his experience this doctor had never seen anything quite like what had happened here.  But his experience and expertise were just what was needed.  The 12-24 hour comment came from the fact that there were several things going on, any one of which could have killed my husband almost immediately.  He had a baseball sized abscess that was very near rupture within his abdominal cavity but not inside the intestine, he had multiple adhesions that had wrapped themselves all around the abscess and eventually cut off progress of fluids through the small intestine, and peritonitis had set in.  As well as the initial danger from possible rupture of the abscess or intestine, any one of these could have become a life-threatening septic condition.  So how on earth was all this going on without my husbands knowledge?  Well, that part is left to theory.
      Here's what we do know:  1) He has a ridiculously high tolerance for pain that probably grew slowly over time along with the illness.  2) He is one of the very small percentage of the population that does not respond to infection with a fever or a high white blood cell count.  (Some researchers have found that these people are often on the autism scale as well.)  3) He was born without an appendix.  (Since all of his intestines had been outside of his body during the surgery and searched thoroughly we can be sure that my husbands best friend is correct when he guesses that my husband is just a little bit more advanced than the rest of us.  His friend is a biology teacher, after all.)  4) Since the abscess was outside the intestines, the only reasonable guess as to what caused the initial infection is probably E-Coli which comes in many forms and can and will invade the body anywhere.  (Several other doctors expressed this guess to us as well when we got back home.)  And finally- 5) There is no way to know when or where this E-Coli would have infected him as people can live for years with an abscess that has been encapsulated inside adhesive scar tissue and is like a ticking time bomb that can burst at any time.

My  husband spent 3 days in ICU and another 5 in the hospital being pumped full of every type of antimicrobial agent you can imagine since we really had no way of knowing for sure what it was that had invaded his body.  Once we knew that he would be strong enough to fly back home, he left the hospital with 20 staples and 3 retention sutures in his gut.  The physical effects that ended up following my husband for months (and now years) after this were nothing compared to what this did to our souls.  This absolutely rocked my world.  It shook me to the core. And it made my husband believe that maybe he should not expect to live a long, normal life even though we had been assured that this whole thing really shouldn't affect his life expectancy at all.  It was so hard to see the person who had been there for me and provided me with the strength that I had so badly needed in such a place of uncertainty.  I was suddenly very aware of what it must be like to be told that a loved one has been hit by bus, but has survived.  Only to be told later that the person will never be quite the same ever again.  Over that summer, I watched my husband go through some of the most difficult emotional times.  Things that I simply never could have imagined.  His body had betrayed him.  (This person that everyone had always described as the neatest, cleanest guy that they ever knew had been compromised by bacteria.)  Neither one of us knew what to trust, where to turn.  Life, that had been moving along on an expected plane, had just moved to a whole new universe.  Nothing was certain and nerves were so raw and exposed.  We both had grown up with very uncertain home lives and had come to expect that as adults we would be able to control our surroundings and live in relative stability.  This had shattered our senses and left both of us searching for a new normal.

For myself, I found that it really was time to grow up.  For all the time that I had spent being a 'little adult' when I was a kid, I had somehow thought that I would be able to make up for that in my own life on my own terms.  But really I had just ended up leaning heavily on my husband for the stability that I had so badly needed.  This had left him empty of the ability to really feel his own emotions.  It was never safe for him to be a little off, even for a day, because I had needed so much from him.  My guilt was immense and yet I was a little scared of this new emotional man in my life.  The truth is that as much as I had needed him to be the one solid thing in my life, he had needed me to be there to take care of him and to feel, when he was not ready to do that yet.

Over time, we both have grown stronger in this new life that has been thrust upon us.  Individually, we have learned how to do the things that we had leaned on one another for, for over a decade.  I, who have always been so independent anyway have learned that if I needed to I could make it all on my own.  And my husband who has never let anything ever get to him seems to be more comfortable with the idea that sometimes you have to embrace and feel the fact that the world can be a scary place.  We have seen that our individual weaknesses can be dealt with best with the unconditional love we share for one another.  We have each grown grateful for the gift that is knowing that you never really do know what tomorrow brings and that any one of us can be gone from this earth at any time. 

My husband will require more surgery to deal with some residual issues left from such invasive initial emergency surgery and we have been putting that off.  There have been so many opportunities to get past this time in our lives and come out stronger- we have pursued things that we never thought possible and made life decisions that we once only discussed in passing and had put off for 'someday'.  During this process there was a song that had come out that summer of 2009 that my husband gravitated towards.   I can remember him stopping whatever he was doing to sing along every time he saw the video played on TV.  If you've made it this far into this ultra-long post, then you owe it to yourself to share in a little bit more of our lives by clicking on the link below:  Oh and thanks for reading, this post is very important to me.

I'm Alive/ Kenny Chesney and Dave Matthews 


  1. I should be very important to you. We don't realize how closely tied our lives are to others. On the surface, it seems selfish, but in reality it is quite normal. After all, we expect those we love to rely on us, not worry about taking advantage of us. You actually did go through the surgery with him, and I'm happy to hear you both came out of it okay. Best to you!

  2. wow...I am so glad your husband made it through all that, and so did you. It really does whittle out what is important to us, doesn't it? That must have been so scary...and praying it wasn't cancer sounds perfectly normal to me. Cancer in the abdominal area (really anywhere) is incredibly tricky. God has everything happen for a reason. Big hugs.

  3. I think that coming close to death makes you appreciate life. It wasn't until this experience that you decided, once again, that you needed to live your lives differently. You needed to be there for each other. It was still a little too one way AND each day is a gift. We tend to take things for granted until we see how temporary they are. Revelation is always very interesting and worth the length of the story.

  4. Wow! I hung on every word of your story. Taking our life for granted is what "we" do, we become complacent even. It takes a life changing event to make us take inventory and reassess our lives. Thank you for sharing your story and I hope your husband continues to get stronger.

  5. I can see why this was so important to you and your husband... totally life altering. I was especially touched--deeply--by your description of how you needed HIM to be strong, and this hindered him from being able to feel his own stuff, and have normal ups and downs, etc. Because I was guilty of that for so long, too. I only realized it a couple of years ago, when my own husbands health declined, and he had to face his own vulnerability.

    Thank you for sharing such a person part of your life. It was so touching. I can see now why you are open to new changes... places to live... pursuits in your life... trying to live fully now.

  6. Wow! So glad he made it through.
    It is very scary when you find out just how fragile life is. And how special each moment with one another is.
    I am glad he is better and I will pray that future surgeries or procedures will go well.

    You both are in my prayers.

  7. @ everyone- thanks for all your wonderful support. It is difficult to share such a personal story about my most beloved and cherished husband. I am truly grateful for him and what all of this has taught us. We will be needing those thoughts and prayers in the near future as we pursue more treatment to revise what is leftover from this whole episode. We want to be guided to the right people and treatment to leave my husband with the most normal life possible.


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