To Hell and Back

Just a small preface here before I start.  This entry in the blog are memories of my journey that I personally do not have. These memories came entirely from Lea Ann. It all centers around eight to ten hours on the third day after my surgery that I do not remember at all. She and I talked about it over dinner out the other night.  We are over a year out from these memories and they still move her. Rather massively I might add. She teared up and would not look at me much of the time that she was telling me about this. From what I heard, I'm rather glad I don't remember it, but more than that... I wish I had not put her through it. No one deserves that. Please understand that this post may be a little smaller than the previous ones. After seeing how much it moved Lea Ann, I didn't want to continue to dredge up old and painful memories for her. I can only imagine that if it still moves her this much now, how it must have been that day for her. Just made me love her all that much more (which I was not aware was even possible).

Having said that...  Here we go.

Monday, January 28, 2013... Still in ICU. Lea Ann had been staying there every night since the surgery. She would not leave other than to go home and shower and get a change of clothes, then come right back. I had been sleeping a lot which is typical.  The ICU nurse actually told Lea Ann that the third day is usually the worst based on his (it was a male nurse that day) experience.  He had been doing this for many years. He was very right. That day my body decided to go haywire. At first my blood pressure shot through the roof... To the tune of 270/180 at several points that day. That pulled in the nurse and a few of doctors. Medication was administered via IV and soon the bottom dropped completely out of the BP...  To the tune of 80/55 and maybe even lower than that, but my heart rate then started skyrocketing 160...170...180...and my oxygen saturation was not budging much sitting in the mid 70's and that was with oxygen. Plus the lung that had been deflated had not re-inflated properly and was only flowing MAYBE 50% of normal. Most people saturate at 97 to 100% while on oxygen. Apparently that day I was not most people.  More doctors, more medication. BP is back up, respiration down, saturation still down, heart rate jumping all over the place. Lea Ann is there with a note pad trying to write down everything, including the doctor's names, so she can look on-line later to see what they were doing... Finally she gave up.  Too much happening too fast. When I was awake, which I do not remember at all, I was apparently complaining about chest pain. Well duh. Maybe that stress test I had the day before the initial surgery date was a good thing after all. I was not lucid for very long pretty much that whole day. At one point there were 12 different doctors in that ICU room and each of them were saying, "give him this" and "give him that," but the meds were being fed into me so quickly that nothing really had a chance to take effect before the next one was introduced. They also had a crash cart sitting immediately outside my door... Just in case. The doctors kept giving orders to give this or that medication and finally the nurse stood up and basically said, "NO!  Enough. He hasn't had a chance to react to anything he has been given." As they say, too many cooks in the kitchen spoils the soup. In this case *I* was the soup. Apparently the doctors agreed with the nurse and decided to monitor me and slow down on the counter-measures to allow my body to react.  The nurse turned to Lea Ann and told her, "We will get him through this. Together. I promise you that we will have him stabilized before my shift ends." She was also told that the last medication they gave me "...ALWAYS works.  In the 19 years I have been doing this I've never seen it fail." Guess what? It failed. Why do I always have to be the one that is different and not do the usual? The doctors and nurse kept working. As the day went on, there were more issues but they did slowly get them all under control, and by the grace of God and their skills, and Lea Ann's being there for me all the time, I was stable by the time the nurse's shift ended. Lea Ann says, and I quote, "That nurse saved your life." That is a truth that she will take with her in her heart forever.  As will I.

Had I known that this happened I would have gone in search of that nurse, given him huge bear hug and a smile and thanked him, not from the bottom of my heart, but from the bottom of my feet to the top of... I can't think of anything high enough. I KNOW Lea Ann did that for us both, but still. He was my nurse only twice the entire time I was in ICU.  Apparently those were the days I needed him the most.  We both did. I thank God for him every night since I found out.

Now Lea Ann is away for a few days, so my next entry may not be until later this coming week or over the weekend. I like to run these by her to allow her to fill in holes I may have, and to add anything I missed.  I just hope the rest is not as painful to her as this was.

See you all next time.

Starting Recovery, The First Day I Remember

Sometime on Sunday, January 27, 2013...  I slowly become aware of many bleeps and blurps and beeps and other sounds all around me.  At first I am not opening my eyes.  I must be dreaming.  No one makes this much noise in a hospital room, right?  Damn I'm tired...  Someone needs to make it a bit quieter in here.  Maybe someone left the door to my room open.  So I say, "Would someone please close the door?"  But no sound comes out.  Not even a hum.  Nothing.  I try again.  Nothing again.  What the hell?  I open my eyes slowly.  It's very bright in here.  All I see is white. Slowly my eyes start to adjust and I can start to make out things.  I'm in a hospital bed.  Ok, that makes sense.  I'm in the hospital after all.  There are all kinds of boxes making most of these noises on either side of my bed.  There are readouts and EKG strips and levers and knobs and blinking lights and digital numbers on either side of me.  Looking up I see several IV pouches. With my eyes, since nothing else seems to want to move just yet, I follow the IV tubes down and see at least three IVs in my arms.  Two in one arm and one in the other that I can see anyway.  Suddenly I feel the automated BP cuff start to pump up.  I look over and next to the TV is a display with my BP and pulse and respiration and oxygen saturation.  I know all these because I had three months to study them when my twin girls were born 16 weeks prematurely.  They were in Neonatal Intensive Care for the first three months of their lives.  A parent learns a LOT about things medical in that time.  In any case, I knew I was getting BP taken, but my glasses were off and I could not see the numbers well.  No alarms were going off.  A very good thing I thought.

I lay there for a few minutes gathering my wits and allowing those parts of my brain to wake up enough to make sense of at least some of what I am seeing and hearing.  People are coming in and out, and I notice that Lea Ann is there at the side of my bed looking down at me and smiling.  She kisses my forehead and tells me that it's all done and everything went well.  I try to talk and no sound yet again.  I frown and look around.  She tells me not to try to talk because I can't. I'm still on a respirator and there is a tube down my throat helping me breathe. I frown again and try to talk again.  I'm not liking this at all.  I start looking from side to side trying to maybe find an angle to be able to talk.  As you can imagine I am still groggy. Nothing I do allows me to talk.  Ok, maybe I can move the tube to the side.  I reach up to move the tube...  Well, more precisely, I *try* to reach up to move the tube.  My arms will move maybe a few inches at most.  That's all.  What the hell is going on here?  They have me tied to the damn railings of the bed.  Worse yet, both my hands are completely wrapped in ace bandages looking like mittens with no thumb.  I am now starting to get perturbed.  I cannot stand being held down or tied down.  I get fidgety and try my best to get out of it.  I pull on the straps around my wrists as hard as I can. So hard that I start twisting in the bed, which gives me my first shot of pain in my chest and belly.  Ok...  Bad idea.  I look at Lea Ann and see she is talking to me and trying to calm me down and explain.  I just have not been listening.  So I start.  She tells me the surgery went well, but took just shy of 12 hours.  It is Sunday...  Sunday?  What happened to Saturday?  Maybe I heard her wrong.  I try to ask her about that.  Again, no sound.  Dammit.  Already forgot about that.  So I keep listening.  I am in ICU.  I have an IV in the side of my neck, in the inside of both elbows and on the left wrist.  I am on a respirator and that is why I cannot talk AND why I am tied down.  So I can't pull anything out while sleeping or whatever.  Ok, I can understand that but I do not like it.  At all.  I am catheterized, I have eight (yes I said eight) tubes coming out of my chest.  Four on each side. And I have a feeding tube, called a J-Tube, in my belly to the left of my belly button, plus the obligatory EKG patches and leads where ever they could fit them. I have six hard plastic... things... over the incision in my chest and belly. They are sutured in and are helping to keep the incision closed.  I instinctively reach to feel them.  The tie downs on my wrists reassert themselves. Lea Ann is just looking down at me smiling.  A few tears too.  Why is she crying?  I told her I'd see her in a little while.  I try to smile to let her know I'm ok and everything is ok too.  Not sure if she can tell I am smiling or not.  She says she will be right back and steps out of the room.  I guess I fell back to sleep then because next time I woke up it was dark outside.  Lea Ann was still there.  So was my ICU nurse.  She was a TINY little thing.  I could eat her whole as a snack.  If I could have at the time, I would have laughed just then.  She was checking me over and reading all the readouts.  Lea Ann watched her and then they both stepped outside the door for a little bit.

Now that I am alone, I HAVE to find a way out of this tie down crap.  So I start rotating my wrists and arms.  Pulling and pushing trying to see if I can hear if tear or give or anything.  Nothing...  BUT...  These ace bandages wrapping my hands are getting looser.  Hmmm. Maybe if I can get the aces to open up enough to free my fingers I can find some way to get the straps off.  So I start working my hands and fingers around.  Balling my fists opening them up, spreading the fingers...  and soon, by god, I have BOTH hands completely free of the ace bandages.  Ha HA!  Success!  Now I can try to get these straps untied.  I try again.  Nothing.  They are tied around my wrists, so I can't reach them even with my freed hands.  Dammit again.  Have I mentioned how much I hate being tied down?  The ladies came back in about the same time I got both hands free.  I had not noticed.  They both explained again why I was tied down.  They went ahead and took the mittens the rest of the way off.  No need for them, especially if I can get out of them.  I look at Lea Ann to get her attention, then point a finger at the nurse and then hold my index finger and thumb about an inch apart.  Lea Ann frowns, not understanding.  So I point at the nurse again a couple of times, then make the little inch symbol on my hand again.  Understanding flashes in her eyes and she smiles and starts to laugh.  That was the most welcome sound I have heard in my entire life.  And the prettiest I have ever seen my wife.  Ever.  The nurse looks up trying to figure us out.  Lea Ann explains that I just basically said that she was exceptionally small.  She chuckles and looks me in the eye and says that good things come in small packages and she is damn good.  She laughs with Lea Ann and I laugh in my head...  I look at Lea Ann and squeeze her hand...  Wait...  When did we start holding hands?  The nurse says everything looks good and asks if I have any pain.  Not really, but I am not sure so I just shrug a couple of times, then shake my head no.  She says ok, and says I probably need to get some more sleep. I shake my head yes at her and look at Lea Ann.  She points to the little fold out chair bed she has been staying in the entire time I've been in ICU.  I swear I married an angel.  I nod to Lea Ann as well.  At that point I got light headed again and fell asleep pretty quickly.  I think the nurse slipped something into one of those IVs...   ZZZzzzzz....

I'll do my best to get another post up in the next few days.  This is kind of therapeutic to write about.  It's rather fun to write it too.  Hope to see you at the next posting!  :)

The Day of Surgery... and the OTHER Day of Surgery

The day before surgery…  January 21, 2013.  I am on a treadmill in a cardiologist’s office sweating my ass off trying to jog for eight or more minutes while this devil in nurse’s clothing kept raising the angle of the treadmill so I was running up a steeper and steeper hill.  I barely made eight minutes. I mean come on lady! I'm still a 300 pound man who did very, VERY little exercising even though I used to be an athlete... albeit that was 30 years ago. It is understandable why they had to check this, but I was NOT ready or in shape for it.  I did pass and cleared for the surgery but I felt like crap afterward.

Tuesday, January 22, 2013… Surgery day.  We hit the hospital at 5:00am to register.  I am a wreck inside, but I can’t show that.  I want to be strong and show Lea Ann, and everyone else, that I am stronger than this thing.  I can’t let them see how much I am shaking.  How much I am afraid that this may be the last day I see on this Earth.  How afraid I am, period.  I can’t let anyone see that.  I can’t.  I won’t.  I guess that is still denial.  I get taken back into pre-op and Lea Ann is allowed to come with me.  I am very grateful for that.  I am clinging to her mentally more than I have ever clinged to anyone before in my life.  I smile and make jokes and try to lighten the mood in the pre-op room as I get changed into my gown.  The nurse comes in and starts my IV and starts a saline drip to hydrate me a bit more.  She also mentions the doctor was running late because he had a late surgery the night before.  It is now about 7:00 and my surgery was slated to start in less than an hour.  Waiting, waiting, waiting.  8:30…  8:45.  The nurse comes in all apologetic and states that the doctor has canceled the surgery for today and rescheduled it for Friday, January 25, because he was just too tired to be sharp for mine.  Looking back, I am glad he decided to wait so he would be on point for me, but cancel it BEFORE the person is lying in the pre-op room with an IV coming out of his arm for three hours!  I was absolutely livid and pretty much out of my mind.  I was not very nice to the nurse even though it was not her fault.  I regret that. I was not nice to anyone. I regret that too.  They took the IV out and I could not get out of there fast enough.  I actually tore off the wrist bands with my hand.  I’ve not been able to do that before or since.  Later they said they were surprised I even came back.  Honestly, I am too but we were in too deep and too far to start all over again someplace else.  Not to mention the fact that we had already paid our co-pay and I doubted we could or would ever get it back.  Later that day, the doctor called and tried to explain and he heard about it.  He understood, but he also made is stance clear.  This was NOT something that he felt he could do if he was fuzzy or tired at all.  It was an eight to ten hour surgery and he wanted to be totally focused and ready for it.  I understood the why’s, but I was still pissed.  So was Lea Ann.

Friday, January 25, 2013… 5:00am again.  Rescheduled surgery day.  Sitting in the same waiting room seeing the same people and feeling the same feelings I had felt three days ago, but now there was a layer of anger and resentment on top of all that.  I fully expected to be put off again.  If it had happened again, I would not have gone back and might have thought about legal action against the hospital.  Again, we are ushered back into pre-op and I get all gowned up again and they start the IV again.  Again it is 7:00 or so and the nurse comes in again…  I start to see red.  She says the doctor had just arrived and he would be in to talk to us in a little while.  Ok, now I am not so mad.  That anger is getting quickly replaced again by worry about the surgery.  I have gone from angry to scared in the space of about two minutes.  The doctor comes in, apologizes again.  I tell him how angry I was.  He makes me a deal.  Once I get through surgery, he will give me one shot at him.  My initial thought is, “right, I’ll be in no shape to take a shot at anyone.  He knows he’s safe,” but I say ok, smile and shake on it.  I know it will never come to pass.  He talks about what will be happen.  Talks about how I will have incisions on my chest to “loosen everything” AND on my back to remove those loosened parts.  Talks about having to deflate a lung to get the parts out.  At least they will not be cracking my chest, it is all coming out between the ribs.  He also talks about how often Lea Ann will be getting updates and all, then he leaves.  It sounds very in depth and very detailed and I am worried yet again that I won’t be strong enough to make it through.  Lea Ann seems to get this feeling from me and leans down, kisses me, tells me it will all be OK and that she will be here when I get out of surgery.  I make her promise and kiss her back.  I feel a little better.  The anesthesiologist comes in next and explains what will be happening to me and what to expect when I come out.  Basically, I will be a mass of IVs and tubes coming in and out and I will NOT be able to talk.  I will be intubated so they can help me breathe while in surgery due to the deflated lung.  Makes sense, but I don’t like the sound of it.  I am not one that handles being that… exposed…  that vulnerable.  Part of me still doesn’t believe it.  I am getting ready to go into major surgery and I am STILL denying the issue.  How stupid am I?  They tell us that it is time to go to the OR.  Lea Ann leans down to kiss me again and tries to smile and reassure me, but I see the tears.  She is as scared as I am.  I have tears too that I’m trying to hold back, but I can’t remember if I was able to or not.  Probably not.  I smile back and tell her I will see her in a little while.  They then start to wheel me into the operating room, and I am laughing because they are having to use my feet to move things out of the way because my feet are hanging off the end of the gurney.  Once in the operating room, I move onto the operating table.  The anesthesiologist says he is giving me something through the IV for nausea because general anesthetic makes me sick, and also something to relax me a little.  A little?  I would not have been scared of a tornado at that point.  I remember being dizzy and buzz-headed and fuzzy thinking, but I still remember most of it.  Then he said he was going to put me out.  They put the oxygen mask over my face and I felt a cool sting in the shoulder of the arm where the IV was…  and that is the last thing I remember for a couple of days.

Hope everyone is enjoying the read.  Please check back later this weekend for the next installment!  :)

Diagnosis, Part 2

Three days later the biopsy results came back.  No cancer!  Deep sigh of relief for me and for us.  Also, no Valley Fever.  That was ok too, but that had never really worried me.  They were proceeding as if this was just a large yeast infection.  However, the second doctor did not believe the pathology of the biopsies.  He swore it was cancer and scheduled me for a second esophageal endoscope four days after the first one so he could re-biopsy the mass himself.  My first thought was that he wanted it to be cancer.  It made me mad actually, but I went ahead and had it done again.  After the scope, he said he’d biopsied deeper and did well over ten different places on the mass.  I was still mad.  I kept asking myself why he wanted this to be cancer so badly.  All I could come up with was he either wanted the surgical fee, or he was one of these that could not stand to be wrong.  Probably both.  The damn biopsies came back clear so LEAVE it!  But he didn’t.  This round of results would be back in three or four business days.  Yay...  I get to fret about it all weekend since it was a Friday.

The following Wednesday we get a call to come into the doctor’s office.  The biopsy came back as cancer this time.  It was exceptionally small and it took two different pathologists to see it, so it was VERY early on.  So early and so small in fact that they couldn’t differentiate the kind of cancer it was.  He said the mass that I had was caused by the Barrett’s Esophagus.  What Barrett’s Esophagus?  No one ever said anything about that before.  I’d never had symptoms, let alone a diagnosis that would have caused a mass that large.  How can that be?  We never really got a good answer for that.  The bottom line was it was cancerous and we had to decide what to do about it.  He was going to confer with the oncologist and see what would be the best next step and would be in touch.  While that was going on I was going to have an esophageal ultrasound and a CT Scan to see how deep the cancer was and determine what stage it was.  The oncologists said that it was so small and early on they would be surprised if it was any more than stage 2.  Try to have a good Christmas…  Gee thanks and Merry Christmas to you too, doc.

The week after Christmas I had the next scope of the esophagus with the ultrasound the CT Scan.  Again, another three to seven days wait for results.  The results came back showing it was NOT in the esophageal wall at all or behind it.  This is good.  Another sign the stage was very early.  They set it as stage 1.  This particular type of cancer is rare and it is even rarer to find it this early.  I should consider myself lucky.  Sure, I’m lucky.  I’ve got cancer.  I’m real lucky.  I was still in denial I guess.  Next up, a PET scan to show if the cancer was anyplace else other than in the esophagus.

The PET scan was done just after New Year’s in January, 2013.  By this time I was getting numb to a lot.  I was not really hearing anything anymore.  All I knew was I had cancer.  It was burned into my brain.  Very little else registered.  Not even the fact I was still losing weight and not eating much.  The PET showed a bright spot exactly where the doc said I had the cancer.  That was expected. However, it also showed that three lymph nodes also were glowing a little meaning that they had cancer in them too.  My brain did register that. Lymph nodes filter the blood.  That means there is a chance that things could get worse.  Great.  We need to schedule surgery soon.  This surgery will consist of taking out a good portion of the esophagus as well as the top portion of the stomach, then stretching the stomach up into the chest and re-attaching it to what was left of the esophagus.  Then he asked if I had had any heart tests done.  I never had.  Even though I had high blood pressure, my heart health was never brought into question.  My cholesterol was good and I did not have diabetes, even though I was overweight.  He scheduled me for a heart stress test for the day before surgery to make sure my heart could handle a surgery of this magnitude.  Now I start to worry if I have the strength to make it through the surgery, let alone the cancer.  This just keeps getting better and better.

I'll see you all again in a couple of days for the next entry... Thanks for reading along!

Diagnosis, Part 1

October, 2012.  320 pounds.  Down 40 pounds.  How can I have lost that much weight in 6 weeks without really trying?  Why was I not really feeling too hungry most of the time anymore?  What is that pain I’m getting in my ribs when I eat sometimes and when I swallow most of the time?

My wife Lea Ann and I had planned a trip back to Illinois to visit her father and our other family there for reasons other than funerals.  We flew out and had a great visit.  Saw a lot of family, and did a lot of visiting. I also drove over into Missouri to see some good friends that I had grown up with and to visit my father’s grave. All in all a very good visit, but I still was not eating much and getting less and less hungry.  It was not something I could hide.  My wife Lea Ann had been noticing the lack of eating, too. She had caught me on more than one occasion getting rid of food I did not want to eat and trying to hide the fact I was not eating.  When she asked me about it I, again, tried to play it off as just not feeling well, or not hungry, or just full, or whatever else I could come up with.

November, 2012...  Weight still coming off; appetite not coming back; rib pain getting a little worse; swallowing pretty much anything is hurting and feeling like the food is sticking.  I talked with Lea Ann about it and she suggested that I go to the doctor. I tried to talk her out of it, but knew it really was a need. I just hate going to the doctor.  In the middle of the month we went.  I explained everything to the doctor in the visit.  Well, everything I felt was relevant.  Lea Ann filled in the holes I left.  The doctor took in all this information and after the examination, came to this conclusion… Gall Bladder.  So now I have to go in for some tests and see if that gall bladder needs to come out.  They were going to schedule me with a general surgeon that specializes in endoscopy.

I was scheduled to have a consultation with this doctor before the procedure because this type of procedure was new to me.  Near the end of the consultation he said, “You know…  All this you have been telling me sounds familiar.  I had many of these same symptoms and I was diagnosed with Valley Fever. Have you ever been checked for that?”  I had heard of Valley Fever but had absolutely no idea what it was or what its symptoms were. I even wondered whether it was a real affliction or not.  He said that there are a lot of misdiagnosed cases and even more go undiagnosed.  A simple blood test will tell us, so I agreed.  If that was what was wrong it was even better than a gall bladder issue because it meant no surgery.

The day of the esophageal endoscope the doctor comes in and explains the procedure, answers all of our questions then steps out again.  I should mention that they had decided to do a colon scan at the same time as this esophageal endoscope because it was overdue.  I have to get one every year to 18 months due to family cancer history.  The test went without a hitch.  When I woke up, Lea Ann was in the room with me.  We were waiting for the doctor to come in and let us know what he found.  Unknown to me at the time, Lea Ann had been taken into another room before I woke up and was told by the nurses how sorry they were and if there was anything they could do, etc… Not a good sign.

The doctor returned and started with the colon scan results.  It was clean.  They burned off a couple of pre-polyps and that was all.  Then he handed Lea Ann a couple of pages of colored print outs of my esophagus.  There was a large, very white mass in several of the pictures.  He said it was at the bottom of the esophagus where it attaches to the stomach.  They had taken several biopsies and also called in another surgeon to look at it.  They were not sure what it was but it might be a simple yeast infection.  That is what my doctor had said I had before when this first started.  At that time he had put me on an anti-fungal and after a week or so, things got a lot better.  We told the doctor that and he started me on more of the same…  At least until the biopsy results came back.  The second doctor was not so sure it was yeast.  He said had years of experience with these things and he said he thought it was cancer.  I tended to think it was just yeast and I would get better, just like last time… But the word cancer was used for the first time and the diagnosis was a lot closer than it ever had been.  I started to worry.  I was about the same age as my father was when he was diagnosed with his cancer.

Check back for the next "chapter" of the journey.   And thank you for coming along for the ride.