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Day Seven – Awaiting Departure

departures

The sun heaved itself over the horizon this morning, the glare in my eyes was like nature’s own alarm clock. This was the opening of day seven here at Secret Squirrel HQ #3. Today was going to be one of those trying days, where patience and emotional stability is pushed to the limit.

The Missus had to bail back to Secret Squirrel HQ #1 to work at her other job. After a week here taking care of my happy natja, you could tell she was pretty unhappy to have to get back. Especially when you consider that at any minute The Call could come in and she would be eight hours away and the chances of catching me before they roll me away to surgery are a little thin on that timeline.

She will be back up during the weekend, however the general displeasure level is still pretty far up there despite that. We have started using Facetime to get us by until then, but there really is no substitute for The Missus herself.

The reason it seems hard to deal with is that in seventeen years we have only spent a few weeks apart, in total. It is a long time to be with someone 24/7, but we really would not have it any other way.

In an interview, John Lennon was asked why he could not be alone without Yoko. His reply would have been similar to mine:

“But I can be alone without Yoko, but I just have no wish to be. There’s no reason on earth why I should be alone without Yoko. There’s nothing more important than our relationship, nothing. And we dig being together all the time. Both of us could survive apart but what for? I’m not going to sacrifice love, real love for any whore or any friend or any business, because in the end you’re alone at night and neither of us want to be.”

That is what makes this wait at Secret Squirrel HQ #3 harder than most people can understand. It is very nice here. There is plenty of room, a nice kitchen, a couple of neurotic cats, lots of stuff nearby and The Missus’ brother and family has bent over backward to make us comfortable. You really could not ask for better people and surroundings, period. Living out of a hotel room in The Big City where the transplant clinic is, just could not compare to the care and compassion here.

So, we hold on to what we have for the Last Great Wait, hoping that we will all be reunited after The Call and prior to rolling into surgery. And should I not be able to speak with you all beforehand, we will see you on the other side.

The Storm

Storm

The other night a pretty big storm came through. The usual wind and rain were present as was “Baseball-sized” hail just south of Secret Squirrel HQ #3. Baseball-sized. That will get your attention in short order. Something like that will knock holes in your roof and if you are not careful, your noggin.

Which got me to pondering how tenuous a thread we all hang from. A year and a half ago, if you would have told me that I would be fighting tooth and nail with chronic liver failure and mesenteric venous thrombosis, I would not have believed it. No way. I was happily ensconced at Secret Squirrel HQ #1 and #2 living my crazy life.

Now, it is a footrace between troublesome and failing parts on my inside and the Docs finding a donor and replacing my guts before I fall down and go boom.

We all cling to that thread of life by hope, belief and trust…and a little luck. One storm, one disease, one second of lost concentration while driving, one little misstep and you go from your regular days to fighting for each moment.

I believe that Warren Zevon put it best. His last interview he knew he was done and his advice to the world was simple: “These days are uncertain, so enjoy every sandwich.”

Which is one of my favorite quotes. Makes perfect sense if you think about it. Of course, “Sandwich,” is symbolic for, well, anything. Sunsets. Songs. Art. Trees. People.

So, these days I try to appreciate what is in front of me. Every day is filled with some kind of miracle, which hopefully outweigh the bad stuff at the time. Some days even waking up can be miraculous, let alone anything more complicated.

However, I did just a have a very nice sandwich.

 

Day Four

Docs

Just when I was believing that the waiting was wrapping up, I find myself…waiting more. A recurring movement in this little symphony, it seems, with family, friends, doctors, transplant coordinators and the Missus all on hold awaiting a donor.

I would say that this is not part of the plan, but quite frankly, there is no plan, just an end goal involving removing nearly all of my insides and replacing them with another set of ones which function better. Which will save my life.

That is well worth the wait to me.

So, the Missus and I are about three-and-a-half hours from the transplant center, which is about as far away as the transplant team will let me go. They want me close so when a donor is found I am able to get to the transplant center quickly…and the Missus’ brother and his family lives here so we are not incurring thousands of dollars of hotel bills hanging out in the big city where the clinic is prior to the transplant. Super nice of them to put up with me. I am not exactly in spectacular physical and mental shape and I am sure that having me around can be a real chore.

After The Call and the transplant, we will have to be in the big city within spitting distance (literally) of the center for somewhere between six weeks and several months. Financially painful, but necessary to get the anti-rejection meds (also financially painful) worked out. Following that, figure another month or so here at the Bro’s digs while they do thrice weekly labs at the transplant center.

Then they will let me get back to the land of cornbread, Bar-B-Cue and catfish where I will be treated at the post-transplant center at the University near home, with several trips a year for check-ups at the center in the big city. That is for the rest of my life, which I hope will be a blessedly long time.

I have a lot left to do in this life, and by no means am I ready to go rejoicing out of this world. Not that any of us really have a choice in the matter, but given my druthers, I would hang out here and continue the adventure for a while, as I am sure we would all prefer.

So, here we are at the start of day four of the Last Great Wait. Email gets checked about every thirty minutes. Cell phones get checked more than is reasonable, like every ten minutes or so it feels. Do not want to miss The Call which will bring the end of the Last Great Wait and give me a new lease on life.

Excuse me while I stare at the phone for a minute. Yep. On. Good signal. Seems to be working.

A little paranoid? You betcha. I am not going to miss that call, plain and simple. They will call and it will resemble the old Road Runner/Wile E. Coyote cartoons. A blur, a puff of smoke and I am in Red Shift sitting on the Acme Super-Duper Rocket heading for the horizon.

As I go back to the Last Great Wait, I wish everyone well. Many of you have helped me and the Missus since this little drama began, and I have no idea what we would do without it, be it putting us on a prayer list to other acts of kindness which have left us nearly in tears. Everyone should be so lucky to have the people around them like we do. We are indeed blessed.

 

No Goodbyes

Highway

I have regrets in life. I believe that those people who espouse that they have none are fooling themselves. No one has a life that is perfect; no one lives perfect days and nights without errors in judgment. I certainly have bungled enough situations to make a Saint wince.

Even now, I look back at times and people passed, knowing that I could have handled things different, with more thought or simply better than I had.

As I get closer to leaving home and going under the big knife, I think of people whose dreams have come and have shuffled off this mortal coil. People I toured with. People I worked with. They were loved ones, all. Should I have called them more? Should I have visited more often? What should I have said and did not?

The latter is the one thing I do not regret. Why?

We toured for a long time with friend, songwriter, producer and bass player John Regan. John is one of the best people you will ever meet, seriously. And John stoutly refuses to say goodbye. He just will not do it. I never asked him why, it is one of those things he has always done and the Missus and I have always simply accepted.

Somewhere along the way I adopted his habit. “Goodbye,” seems so final, so absolute, like something that when spoken can never be taken back. “See you later,” has a much better sentiment to it. It makes you feel like you will see that person again very soon…and in this crazy world, the wish to share more time with a friend or loved one is a noble one, perhaps one of the most outstanding.

So, as I prepare to head off to the transplant center, I have no goodbyes for any of those I love. Only a very sincere, “I will see you later,” for each of you.

 

Rest Area

When you are laid up, not sleeping and essentially limited in your scope of travel to about 2000 square feet, the mind plays a few tricks on you (we will not even get into the encephalopathy). Old memories long forgotten, people, places, experiences all jumbled back temporarily to the forefront.

The other night, it was a long past memory of one of the most stunning sunrises I had ever seen. It was 1988 or 1989 and I was doing a tour with a very popular R&B act. The night before, we had wrapped up something like 16 shows in a row, the crew was totally spent and was racked out in the buses.

Around five in the morning, I woke up as the bus pulled off the highway. I had the bad habit almost from the first tour I had done of waking up when the bus slowed down and stopped, which made it hard to get a good night’s rest. In this case, the driver just needed to make a quick stop at a rest area. A fine idea, I thought, so I threw on some shoes and waited up front for him to park.

As I exited the bus I came face to face with a tumult of color in the sky, Every hue imaginable to the mind bright and clear and beautiful. A miracle in the midst of stained concrete, diesel fumes and the roar of engines, it had the effect of stopping me in my tracks. It was a fleeting moment of pure beauty, rare and untainted.

You see a lot of things on the road and every now and then there is something that makes a profound impression that stays in the back of your mind. I believe that all of us carry memories like this, waiting to be nudged loose by some current event or similar circumstance.

Things like this have been coming to the leading edge lately, and I carry them like good luck charms until they fade away in the crumbling haz-mat puddle that is what passes for my brain right now. All in a day of grinding my teeth while waiting for my time under the big knife.

C’est la Vie.

 

And Thus, We Begin.

Before we get into the latest (and somewhat repetitive) news on the Great Organ Replacement Scene, I just wanted to make a short, very personal statement.

I will never cease to be amazed at the love and generosity of family and friends, both near and far during this medical debacle of mine. The Missus and I are truly thankful, humbled and will never forget how everyone helped us through this incredibly hard time.

Now the latest.

Unfortunately my condition has taken a rather sudden and disturbing decline. The sharp, stabbing pain that shoots through my abdomen has reached not-quite-hospitalize-me levels. Nausea is pretty fierce as is vertigo. Short-term memory is a little lean and I find myself doing a bit of word-searching from time to time. Toss in massive fatigue, annoying weakness, shaking like a leaf and raging insomnia and the little vision of my current plight is complete.

I am certain there are far worse medical conditions to have, however I really do not recommend this one.

The big news is that I made it through the transplant committee process and as soon as some insurance paperwork comes through, I should be placed on the UNOS transplant list. A big step and a big relief since there really were no other options for me.

Now we are getting ready to relocate me within the mandated 4-hour distance to the transplant facility, where I will await the phone call that there is a potential set of organs that match my criteria. The Missus will come up on weekends, as she has not one, but two jobs to maintain, which will be difficult on both of us. In seventeen years we have spent very little time apart, so on top of a chronic disease, we will be apart more often than not for the foreseeable future.

There is no other way to put this, but it is going to suck. A lot.

It goes with the current territory, I suppose. Some things in life are not supposed to be easy and this is certainly one of them. The physical, emotional and philosophical strain is really something else. I have been through a lot of situations in my life. Some were joyous, some were utterly crushing. There were several times when I wondered if I was going to make it through it unscathed and a few times I was not sure if there was a way out at all.

And now this.

So many, “maybes.” So many, “what if’s.” So many possibilities. So much waiting. I wish I had the patience and the grace to handle it better, but I do the best I can with what I have and who I am, and like I said at the top of this little missive…

A lot of help from a lot of people.

 

Superstitious

Sign

Yesterday, I had the most invasive procedure I have had in this little adventure. It was delightful. A little local anesthetic and then a tube jammed into my leg, worked up to my heart and then used to poke, prod and run a bunch of radioactive fluid through that whole Los Angeles highway style mish-mosh that make up the network of arteries, veins and muscles in there.

I would love you tell you that was entertaining; however the fun-factor was pretty low on that one. Of course, in a hospital, fun is generally a bit hard to come by. Rightly, they are more interested in trying to heal you than getting a conga line going through the cardiac lab.

We will not even get into the fact that it was Friday the 13th, and I was in bay #4. Let us just say I am a wee bit superstitious and I was not particularly pleased in my own irrational, ridiculous way. Might as well bring in a bowl of rice with some chopsticks jammed vertically in it.

And this was the highlight, and thankfully, the end of a full week of back to back tests, that left not only me feeling wet-rag-drained to the bones, but the Mrs. as well. She was a serious trooper, keeping up with all the times, appointments, doctors, paperwork, medications and endless questions that came up over the 120 hours we were involved in this.

Do not get me wrong, the folks here at this transplant center are tops. This transplant evaluation was thrown together very quickly for as complicated of a procedure as it is, and when the cracks started to show, the went out of their way to help us out.

But I digress. I should back up to the beginning of this little adventure.

I went through much of the same process, not quite as thorough but close, over at UAB’s transplant clinic. Unfortunately, they found that in the past I had developed a clot in one of the veins feeding the liver. Over time, the clot had grown to nearly block another vein and work in some smaller clots nearby. Needless to say, this was not good.

In a nutshell, a standard liver transplant was not possible. I would need a very complex procedure where the liver, small intestine, pancreas and part of the stomach are all pulled out and replaced. Along with all those organs come the veins and arteries to replace all of mine.

Complicated? It is like changing the gear shift knob vs. getting a whole new transmission.

So, here we are. More questions, more needles, more radiation. A steady parade of coordinators, doctors, nurses, PA’s, technicians, counselors, receptionists, social workers, dieticians, psychologists and transportation folks. It slowly wears you down, leaving you dizzy (literally and figuratively), but when the only option is this, you crank about it in your head for thirty seconds and then knuckle up and do it. Period.

Meanwhile, my body grows weaker. My strength and balance fail me more often. My hands shake badly from time to time. My thoughts get hazier and it is harder to concentrate. If it were not for the help of a great number of family and friends, I am quite certain that I would have fallen apart months ago, and for all their endless support, I am well and truly blessed.

And so we go on, because the only way to fail is to quit.

The Day

Today, Carolyn and I were married. We had the ceremony at the shop with all the Jones clan, friends from our humble little city, Nashville and Las Vegas either in the ceremony or helping to pull the whole thing off.

And it was lovely.

Sam turned the shop into an amazing little chapel, Pink made some amazing cakes, JT performed three songs amazingly and lots of other pitched in to make it a day to remember. Fudge Pie Phil, who is a pastor up at Belmont in Nashville, wrote a fine ceremony that was serious, funny and uplifting all at once. Gordon was Carolyn’s Man of Honor…the hitch came somewhere a few weeks ago, when it hit me that I needed a best man.

Logically, any number of friends or family from my past or present would have filled the bill, yet something did not seem right. I ended up with an empty space next to me and read the following before the ceremony:

“Thank you all for coming to our little extravaganza. You have probably noticed this space where a best man would stand. Anyone here today and many of my friends from my past could stand in this place and it would make perfect sense, however, it is empty and it is Carolyn’s fault.

You see, she was on the on the phone asking Gordon to be her Man of Honor. Gordon must have asked her why, and she reeled off a list of Man of Honor qualifications…someone who supports you no matter what. Someone you can call at all hours simply to talk something through. Someone who lifts you up, unconditionally, without asking a thing in return. Someone who is simply there for you.

My quandary is this: That describes Carolyn to a T. She has always been my beacon, sharing my hopes and dreams. Even when the situation appears to be grim, she pulls me though it. She is my Best Woman.

Since she already has a spot up here, there is this space. And since I cannot fit all of you into this one space, I leave it open to represent all you magnificent people who have taken Carolyn and I into your hearts.”

And that was that. It was an amazing afternoon and I was glad to see that everyone was happy with the whole thing, especially Carolyn, because weddings really are about the bride.

Now we move forward as man and wife, with whatever life throws at us taken in stride, together. It is the same as the seventeen years prior, but with a subtle difference. No more “Girlfriend” or “Significant Other” needed.

Amen.

Test, check. Is this thing on?

I am not known for being “Mr. Patience” or anything. Anyone who knows me well can tell you that after a few minutes of waiting in line, waiting on hold or that little bit of time prior to any appointment, I will more than likely grind off a bit of tooth enamel.

When the waiting is in a hospital and there are teams of very intelligent people trying to figure out what is happening inside me and devise a course of treatment, it is a bit rough. You do not want to rush anyone as a misdiagnosis could be very, very bad. Like Miracle Max says in The Princess Bride, “Don’t rush a miracle man, you get rotten miracles.”

Fast forward to this morning.

After a solid week and who knows how many tests (and needles), my natural impatience is turning slowly to serious concern. While they have me on a course of treatments, there is so much happening with the different organ systems that there really is no solid, “Hey, this is what is wrong,” which would make anyone a little uncomfortable.

The upside is that after some more IV’s and observation, I should get sprung from this joint. While the folks here are very nice, I flipped over to stir-crazy mode days ago and we are already stuffing our personal items into a bag.

I know there is more of this to deal with in the future and I am very lucky for the family and friends whose moral support is invaluable to me while I slowly sputter along.

More later.

No Conga Line?

In the hospital, there is no conga line or punch bowl. Just a building full of people who are damaged in some way or another and bunch of people who are trying to help them. It is a serious place, where the line between doing well and doing badly is exposed like a bad tabloid story.

No appetizers either.

Before the week even began I found myself in the ER, basically doubled over with the worst abdominal pain I have ever had. It must have shown, as I was grabbed by a nurse out of the registration line and whisked off to an exam room. With Chupi basically acting as an interpreter, while I ground off another layer of tooth enamel, wondering if I was going to pop open like one of those people in the movie ‘Alien.’ An injection of painkillers later and I was able to at least reply to questions.

Fast forward to mid-week. Test after test, x-ray, MRI, etc. At this point there are no absolute conclusions, just debilitating pain between shots and going stir-crazy in the rational moments. The tests are showing clotting issues and an inflamed section of intestine. The cause is not apparent at this time.

Fast forward to the end of the week. Teams of very nice people oozing IQ points from the hematology, hepatology and…regular doctor (I am sure there is a term for them) decide on a plan of treatment. After a tidal wave of information, the relief is palpable. New meds to try and knock this back are issued and we are off and running. Well not quite. I am being held for observation for a couple of days to make sure it is all hunky-dory.

With a little luck, I will be out of here nearly a week after stumbling in. I find it amazing how one organ can wreak so much havoc on someone.

And in case you are curious, there will be a conga line eventually.