Mr Attitude

It doesn't really matter how well trained a horse is, if he/she gets excited enough something is bound to happen. With as many horses as I have, examples of this seem to happen pretty regularly.  Since I had a difficult day and have not completed the post I intended, I thought I would share an example that happened earlier today.

Pretty much all of my morning was taken up because of a doctor appointment and Dave and Lindsay had errands to run that were going to take the afternoon. Lindsay had the stalls all done when Dave and I got home but hadn't gotten to turnouts. I was too miserable after riding in the truck to take care of turning stallions out so I asked Dave if he would do it for me before he and Lindsay left.

I warned Dave to be ready for Legs to be pretty full of himself because the temperatures have dropped and he's missed some time out. Either one would be enough for the horse to cop an attitude so I didn't want Dave to be caught off guard since Legs is normally so good for him. Usually if I let Legs know I am prepared for his games, he behaves because it's no fun if I am ready for his silliness.

The other stallion I wanted Dave to turn out was Tango. He is 3 now and, between the lawsuit and my illness, his manners can be a little rough around the edges. He wants to be good but he's still unsure what that means. Considering the small amount of work done with him, Tango's behavior had improved dramatically but he definitely still needs work.

I heard Tango scream with delight when he was turned loose in the front paddock. I didn't hear he and Dave approaching so I figured he must have been pretty good. if Dave has problems with a horse I usually can hear him in front of the house chastising the horse.

Dave grinned when sharing how hard Tango had tried to do what Dave asked. The horse was oozing excitement from every pore but watching Dave like a hawk  to assure he didn't get ahead of him. Tango was a star.

Legs on the other hand got the dunce cap. He came out of the stall bouncing around and standing on his hind legs. I imagine Dave didn't think my instructions on how to diffuse the horse's enthusiasm were necessary. He tends to learn better the hard way. Legs came out of the stall leaping and cavorting and flinging his head from side to side.  

Luckily for Dave, while Legs was tossing his head expressing his "I'm the coolest!" attitude, he flipped his head just right that he bonked himself squarely between the eyes with the lead. He'd flung his head with such force there was an audible thud as the rope clobbered him.

The stallion immediately looked at Dave  and dropped quickly, but quietly,  to all four feet, convinced the man had landed this well placed blow. Dave laughed and the horse sulked because he hates being caught doing something stupid, but he walked like a gentleman the rest of the way out. Legs had no idea he landed that blow himself so he'll think twice before he tests Dave again. Dave is still chuckling tonight because the rope couldn't have landed more  squarely between the horse's eyes and the expression on the stallion's face was priceless. 

A Return to the Journey of 2011... ..My Situation at Home

 Part 1

If I had any illusions about my condition, they were questioned once I got home. I had no trouble getting to the toilet in my hospital room but it was five feet from my bed. At home it was down a hall that felt fifty miles long to me.

I couldn't make the trip down and back without hanging onto the walls.  I would shake from exhaustion for several minutes before it would subside. Then I would fall asleep from sheer exhaustion. Not really what I had envisioned when I'd longed to be home.

 In the morning I would join my family in the living room spending my time mostly sleeping on the couch. I didn't get up except for those necessary trips to the bathroom. In the evenings I would drag myself back down the hall to bed. It took everything I had to accomplish that. That's pretty much how those early days went.

I weighed somewhere around 120 lbs. I was so boney that sitting or laying hurt until fernvalley reminded me that pillows like I had used in the hospital would prevent bed sores. I have gained weight but I am still using those pillows. I've worn out a couple of pillows cases and have killed at least one pillow but I totally avoided those bed sores and that feels like a big accomplishment.

At first the dressing changes were daily. Dave was the one doing all the work but I was usually falling asleep as he laboured over me.  I remember wondering how sick must I be if the simple task of a dressing change exhausted me.

I didn't really want the answer to that question. I was sicker than I wanted to acknowledge but there were times I realized I was not out of the woods yet even though I was home. It was too disheartening to think about often but the reality was hard to deny when my life at home was not much different than that in the hospital.

I was too exhausted to dress and too exhausted to eat. Most nutrition was in the liquid form and sometimes I would fall asleep before the glass was empty.

The nurses regularly coming and going kept a stoic front not wanting me to be alarmed at their reaction to my condition. One would later admit his fears for my safety upon seeing my wounds for the first time but I never would have guessed his concerns.

 I figured I must be well enough to be there or I wouldn't have been allowed to come home. I probably had more faith in the healthcare system than it deserved but that belief kept me insulated from a truth too overwhelming to fathom. I had to believe that I would be on my feet soon and I sure didn't want to accept how vulnerable I was but there were those out there just waiting for an opportunity to strike.

To be continued....

The Farm..........

A Return to the Journey of 2011.....Getting Home with Baggage

 




 Part 1

Despite the fact my pain management was not good with the change over to oral medication, no one at the hospital seemed to be concerned so I sure wasn't going to let it stop me from going home. The pain really wasn't much worse than what I had been enduring on IV medications for weeks already. It seemed to me if they hadn't fixed it sooner, they sure weren't  likely to make it any better by keeping me there. I needed out of the hospital and that was all that mattered to me.

The rest of the requirements for my discharge were lined up the next morning complete with a visit from the social worker explaining everything that was in place. It actually took longer for a nurse to get time to get my signature on the dotted line than it had taken for the social worker to make all the arrangements. My discharge was authorized well before noon but Dave and I didn't depart for the drive home until the evening rush hour , all because of under staffing.

In addition to the obvious issues of pain and wound care there were a number of other issues affecting me as well.  To understand what's to follow I think it is important to know those forces playing on me since each contributed in its own way to a chink in the armor that usually protects me from life's twists and turns.
The weeks of alone time had me feeling very isolated. While I had visitors after the first surgery, most everyone thought I had long since been discharged and the visitors had stopped except for Lindsay and Dave.

My other connection with the outside world had been in the form of blog comments left after the handful of posts either Dave or I had managed to do while I was hospitalized. Those comments had served as an important connection to my life and my horses. They helped keep me sane in a world turned upside down.

I posted a brief post when I got home trying to reestablish the lifeline online connections had been. Pain interfered with my ability to keep that going despite how desperately I needed it. Nuzzling Muzzles commented on an earlier post how important a touch of a friend had been during her bout with hospitalization. Well, comments have done that for me as I have struggled to hang onto the vision of a life other than crippling pain and disease. My  inability to reform those connections left the vultures of isolation preying on me daily.

During my stay in the hospital I had struggled trying to figure out the right thing for my horses. I have such a high standard for myself on how I think they should be cared for. There was no way this barn could be maintained like a show horse barn without my help. Dave and Lindsay are just not up to that task and with the second surgery in such a short amount of time I had no idea how long I was going to be out of commission. The responsibility weighed heavily on my shoulders despite the fact the horses were fine and living above the standards of most any horse people. They were not living up to mine and believing that was a problem that made me vulnerable in ways I couldn't have imagined.

To be continued....

More Baggage

A Little Change of Pace - Decisions

I don't know about you but I can use a break from the darkness of this series of posts so I have decided to take a brief respite from the telling of my story and focus instead something else.

This past weekend we had issues with our cable and boredom was driving me crazy. I had the forethought to have Dave set up the DVD player and show me which buttons to push (since I can't read any of that tiny print and don't use the thing often enough to know).  Then I was good to go with the small stack of DVDs that are of interest to me.

I was torn between watching training material I have from Bobby Hart, Tommy Garland and then my assortment of horse movies. I have studied extensively the Hart material but I have never removed the shrink wrap from the Tommy Garland stuff since I lost all respect for the man with his treatment of my client and Rhythm.

Considering the man is dishonest and exploitative, how can I trust the material on the DVD series? I have a lot of money tied up there but who's to say it's anything more than smoke and mirrors.

I know plenty of horse trainers with talent who took shortcuts behind closed doors at the horse's expense. While Tommy Garland obviously had a lot of talent he is not the young,   eager trainer I respected 18 years ago when Dandy was young. There was a huge difference between that first clinic I attended than that one just a few years back. The first had been about helping the participants with their horses while the second had been about promoting Tommy Garland and selling those DVDs. If I had seen that at the time, maybe Rhythm and his new owner would have been saved from the destructive course they ended up on.

I will probably always kick myself for not seeing what was right in front of me. I paid big money for him to help me with two of my horses that weekend. He used my time and my horses to pitch content on his soon to be released DVDs. He did literally hundreds, if not thousands, of dollars in advance sales that weekend and I did not learn one single helpful thing with either horse but didn't even see it until the glow of doing a clinic with RFD-TVs latest star had dimmed and I realized what he did with my horses was unrelated to the issue I had requested assistance with.

That seeing the red flags after the fact is one of those things I am hoping to put behind me but just the memory of this whole thing with Tommy Garland was enough to settle the discussion I was having with myself about which DVDs were worth watching. Those by Garland are still in their shrink wrap. I opted to watch Buck
instead.
....and I watched it over....and over.....and over.

Hopefully I will be able to put into words what I saw.

To be continued....

A Return to the Journey of 2011... ...The Verdict........

  Part 1

I can still see the vision of my husband precisely cutting the strip of medicated material to the exact size necessary to reach completely to the bottom of each wound with the width going to but barely touching both sides without causing pressure. Dave held up each finished piece declaring his belief it was right to the approving nod of the wound nurse. Then he carefully inserted each cut down into the wounds.

 Both fit perfectly and each was positioned with equal precision. Even with the weird contortions of the lower wound, Dave never once dinged the edges or caused me pain. His methodology was the best I had experienced to date in all aspects of my wound care.  I really had no complaints about any caregiver who had tended to those wounds before him so it wasn't that the bar was low. He was just that good at this task I had asked of him. It was obvious the wound care nurse was as pleased as I.

The doctor arrived soon after Dave had placed the medication into position. With both wounds still exposed the surgeon carefully inspected the condition of each wound and the medicated strips. Then he moved on to reading the label on the packaging of the treatment as the nurse once again explained the damage done to the skin around my ostomy because of all the flushing which indicated the need for this change.

With the reminder of the byproduct of his treatment plan, the doctor looked back to my andomen to see exactly what the nurse was complaining about. I winced as he probed the area with his fingers but if he noticed, he did not acknowledge the discomfort he had caused. Instead he nodded to the nurse declaring he was comfortable with her choice of medication.

From there it was decided I could go home once my pain medications had been changed from IV to oral, as long as Dave committed to daily dressing changes. In addition I needed to have home health care service set up with a nurse, a wound care nurse and a dietitian. I also needed to have appointments in place for the coumadin clinic and the surgeon. If all of that could be arranged I could forgo the nursing home.

The appointments and services would all be set up by a hospital social worker as long as financial approvals could be met.  The orders just needed to be entered for all of this to even start the wheels in motion.

 The wound nurse figured maybe one more day and I would finally be home. Then the real craziness would start.

To be continued.......

Getting Home with Baggage

A Return to the Journey of 2011... Dave's Tests...Both Present and Past.........

  Part 1

While we waited for the doctor to arrive the wound care nurse went in search of the product she intended to use instead of wound flushing. I don't recall specifically what it was, only that it was something specific to her bag of tricks that the doctor didn't understand. That is why he was coming to see her solution for himself.

Once she had returned and the doctor had called to say he would be there shortly, the nurse decided it was time to begin Dave's instruction on how to care for my wounds. I still think the nurse was expecting my husband to not be able to handle the situation because he had no type of medical training but she didn't let on. If he was willing to try, she was willing to give him the chance.

I remember Dave was all business as soon as he knew the task was at hand. As the nurse began to put on her gloves, Dave asked her where he might find bigger ones and then easily donned those she indicated.

He had a focus about him I rarely see. He studied each movement the nurse made as she began laying out the supplies she expected to use. Next thing I knew he was peeling off the large dressing protecting the two large wounds that dominated the middle of my abdomen.

The nurse talked Dave through each step of caring for each wound. She described in detail each wound and its complexities, as well as warning signs to watch for.

One wound was right in the middle where my belly button should have been. It was about the size of a plum laid out sideways and it was deep. The second one was down farther, right at the end of the incision but above my pubic bone. It was smaller, but it was deep and it had caverns that went underneath what looked like healthy skin.

In actuality the second was far worse than the first.  It had the potential to go south quickly and for such complications to go unnoticed so she explained to Dave how to find the hidden caverns and how to check for the development of new ones, as well as what to do if that should occur.

Dave worked his way through this process with determination and confidence. There was a surety in his movements that surprised even me. I found myself wondering where he had gotten it. Then it dawned on me.

Dave was in the Air Force during the Vietnam War. He has always claimed not to be a veteran of that conflict but I never believed him. He has always had the classic signs of someone with PTSD but he insisted he was stationed elsewhere.

As he worked, I asked him, "When you were in the Air Force were you flying support  for the war, 

Without even looking up the man confirmed my suspicions and I asked him the second part of my question, "Did you end up helping them treat the patients or anything like that?"

"Uh huh," he responded, still not being specific so I point blank asked why this mess that was my abdomen didn't seem to phase him at all.

"This is nothing compared to what I saw then,"  he responded without any change to his voice but the magnitude of what he said was not lost on me or the nurse.

I finally had an explanation for those PTSD symptoms I've witnessed over the years. God bless this gentle man who gives me all he can.

To be continued.....

The Verdict

A Return to the Journey of 2011... A Discovery

  Part 1

It was the wound care nurse who was the first of my caregivers to realize my ostomy was being compromised by the wound flushing. Of course she had no idea what had caused the problem but she immediately saw there was one when I exposed my abdomen to her and Dave for his lesson in how to care for my open wounds. She was the nurse who had initially given me such grief because I could not deal with my ostomy. She was convinced I was just behaving like another spoiled patient, pissed off at the world for life's latest curve ball. When she learned I was actually experiencing a strong, crippling response at the very sight of the ostomy and that I was still trying despite it, her opinion about me changed and her approach softened. Now as she saw the red skin around the seal of the ostomy bag, a concerned look crossed her face. She probed the site with her fingers and I winced with pain so she inquired about the source of the irritation. Upon learning about the doctor's treatment plan, she shook her head in disbelief. Then she called the surgeon immediately, not even bothering to leave my room before making the call. It was clear from the conversation she intended to change the doctor's mind and would settle for nothing less. The doctor was on his way to actually she what she had up her sleeve. Dave's lesson on dealing with my wounds was tabled until the surgeon could get there. This nurse was not allowing anything to be over done on her watch.

To be continued......

Dave's Tests...Both Present and Past....

A Return to the Journey of 2011... More Mistakes.....

 Part 1

I could tell from the wound nurse's reaction to my suggestion Dave could care for those two large holes in my abdomen that she had serious doubts but I think she realized there was no point in arguing with me about it. Her solution was to tell me he would need to come to the hospital to be taught what was necessary and the final decision about whether he was up to this task would be hers so I called him and an appointment was made. She may have thought this was over but I knew it was just beginning. Dave would handle this for me, I was sure of it.

While waiting for him to arrive I was once more sent off to the shower. That meant one more time my ostomy bag was compromised. The only difference this time was the nurse dressing my wound and replacing the bag was teaching a student as well. When the bag was placed on my skin this nurse pushed around the seal without checking the placement first and the position was off. Deciding it should be perfect she peeled it off, despite my protestations, and broke out another new bag.

This made five times in about thirty hours the thing was been changed. My skin was beginning to show the strain of too many changes. This nurse didn't seem to notice or care but I was definitely feeling it and the redness spread beyond the outer portion of the seal.

This was the first time I would experience someone in a teaching capacity do something that compromised my care but it would not be my last. The part that concerns me is the fact this nurse didn't even see the harm she caused and that has appeared to be a theme throughout   my story which suggests up and coming doctors and nurses are getting some unfortunate advise. so what is the next generation of health care providers going to be like with careless teachers like these?

To be continued.......

A Discovery..........

A Return to the Journey of 2011... Consequences....

  Part 1

I managed to make it through that first shower despite the fact I was exhausted enough to fall asleep while waiting for the nurse to bring the chair. However, I knew I was pushing myself well beyond my limits so I actually rang for the nurse before I was finished.

I figured it would take her some time to get there so I pulled the cord to summon the nurse when I was just finishing up with the wound flushing. Then I would have plenty of time to dry off, cover my wounds and dress before she arrived. No way was I allowing her to see me naked again.

I was so exhausted at this point i struggled to raise myself out of the chair to dry off my back side. I nearly fell as I tried to stand long enough to place a dry towel on the wet seat but I refused to admit I could not complete the simple tasks facing me.

By the time the nurse arrived I had managed to finish. I even got on my socks and slippers keeping them dry in the process but I was totally spent. I had to resign myself to being wheeled back to my room.

Once there, the matter of my ostomy bag had to be addressed. As I feared the seal has indeed been compromised by the method I had used to clean my wounds. The bag had to be removed and replaced with a new one.

The only one who seemed to be concerned with this was me so twice more in that day the whole process was repeated. Each time, no matter how the bag was protected or what I did trying to keep it dry I ended up with the same result.

The next morning when the surgeon arrived, he was thrilled with the improvement in both wounds. He decided I could be discharged as long as the treatment of flushing the wounds three times a day was continued.

The only question was where would I go. Patients are rarely discharged to home with open wounds, instead they are sent to nursing homes. The only exceptions happen when there is someone in the household who can perform the necessary care.

I didn't learn of these restrictions until the wound nurse came. She was there for final instructions about my ostomy and talking about what I needed to know when I got to the nursing home. You can imagine how this hit me. I had no plans of going to any nursing home, no way, no how.

We ended up in an emotional discussion. The nurse was trying to convince me why a nursing home was best and I was arguing my perception that such a place would be detrimental to my mental health. The nurse insisted I needed someone to change my dressings everyday.......and I once again volunteered Dave.

To be continued.....

More Mistakes.........

A Return to the Journey of 2011... Getting Through....

  Part 1

As big a wimp as I am about blood and guts, I have always managed to put that queasiness aside or at least manage it if I absolutely had to. This shower was definitely an exercise in managing my physical revulsion at my wounds. I had to focus on what I needed to do without dwelling on what I was seeing, nor particularly easy for me when I am well, let alone in this kind of condition.

The whole purpose of the plastic over the ostomy bag was to keep it and the surrounding skin dry so the bag would not loosen. The difficulty on that was its proximity to the wounds needing to be flushed. With a mere two inches between the incision and my ostomy there was little, if any chance, the wounds could be flushed without getting water all over the area of the ostomy and it sure didn't look to me like this makeshift barrier could possibly keep things dry.

The shower was fitted with one of those handheld shower heads but it did not have a choice of settings.  There really wasn't much of an adjustment for pressure either. Flushing these wounds without getting water underneath the plastic protecting the ostomy didn't seem possible.

I really has gotten no more instruction than to flush with warm water for fifteen minutes. Now looking at the condition of the wounds I figured my best course of action would be to treat it the same way I had the hole in Lilly's chest.

I tried to keep the stream of water angled away from the location of the ostomy. I had to gauge how close I held the shower head based on how the water deflected so it wasn't splashing too forcefully onto the area that needed to be protected. At the same time I knew there needed to be enough pressure to remove all debris from both wounds.

 It was an exercise in futility and in addition to that it was darn cold. Keeping the water on that small portion of my body left the rest of me exposed to the cool air of the room.

I had concerns about using the water to keep me warm because of the possibility of exposing my wounds to something far worse that could be hanging out on these hospital bathroom walls. That was the last thing I needed.

To remove everything that appeared to be abnormal from my wounds I had to abandon my plan of keeping the water turned away from the ostomy. It took turning that nozzle any and all directions to thoroughly cleanse both wounds,  despite the fact I knew doing so was probably compromising the integrity of the seal on my ostomy bag.


This was the flaw in the surgeon's plan that no one noticed and I would be the one to pay for that oversight. I just didn't know it yet.

To be continued......

Consequences

A Return to the Journey of 2011... Realizations....

  Part 1


 With the sound of the door closing behind the nurse, I turned my attention toward the task at hand. Just like I would have done at home, I began with washing my hair so the conditioner could sit while I doing everything else.

I really hadn't thought about how long that approach would leave me sitting with a wet head when it was time to turn my attention to flushing the wounds that brought me to the shower in the first place.

I have been a practitioner of a five minute shower ever since my boarding school days when the whole process had to be completed in under that time or else cold water would come flying over the wall, projected there by an angry student waiting in line for her turn. That means I am rarely in the shower long enough to experience getting cold so it never crossed my mind in these circumstances despite the fact that I had learned getting cold caused my pain levels to go through the roof that I should be thinking about how I would stay warm through this process.

My shower started off pleasant enough. There was a conglomeration of plastic and tape over my ostomy bag to keep it dry and the area of my incision was still covered with a dressing. I decided upfront I would let the water loosen it so it would not pull like it usually did when it was removed.  These two thing being covered meant I did not have to look at the two most stressful aspects of my body until the end.

Words can not describe the pleasure I felt as I experienced the warm water flowing over my body. Never in my life have I appreciated a shower as much as I did in those initial moments. I closed my eyes and the world seemed right but it was not to last.

I was jolted to reality when I proceed to wash under my arms. The washcloth literally disappeared into the void that was my armpit. The muscle wasting was so extreme even my long fingers could not touch skin at the bottom of that hole.

 If I had denial left about the reality of my condition, it was quickly disintegrating. By the time the water washed away the dressing on my abdomen, I was already reeling. I was totally unprepared for the two gaping holes that overshadowed my surgical incision.

 Only one other time in my life have I seen such a distressing wound and that happened to be on one of my horses. At least the hole in my mare's chest had not been formed by disease but how I had dealt with it definitely inspired how I would deal with my own wounds. While this whole idea might have been a good plan, there was definitely an important side effect of it that had not been considered.

To be continued.....

Getting Through



Note: I want to remind my readers my reasoning for going into this detail is that it is the groundwork for what has followed. I believe it will be easier to understand how some things happened and where I am today and hopefully it will help someone along the way avoid some pitfalls that I stumbled into.

A Return to the Journey of 2011...Vulnerabilities

  Part 1

As I sat there on the commode, my mind wanted to race but I was too exhausted even for thinking. My eyes closed. My focus waned. My normal hyper vigilance in unfamiliar places could not be maintained. I slept.

The opening of the bathroom door startled me awake. Fear coursed adrenaline through my veins as I turned to face who or what had awakened me.

In the doorway stood another nurse as startled at discovering me as I was by her intrusion on my unplanned nap. Apologizing while quickly retreating she was gone in an instant. The door was once again closed leaving me with only enough charge to be concerned about my vulnerability lest the next intrusion be not so benign.

When the door opened I was not startled at all since my eyes had not left its surface since its last closing. This time it was my nurse carrying my shower chair which she quickly placed in the cubicle. Then she proceeded to lay out in convenient order all the supplies she'd previously carried before turning her attention to adjusting the water's temperature for the perfect warmth for me.

With everything ready the nurse assisted me in removing my hospital clothing and then getting me from the toilet to the chair. With the surge of adrenaline from the earlier intrusion I actually had the strength to move from one perch to the other.

Age has certainly relieved me of any comfort I might have had with my body at one time. Yet even in days past I was never comfortable around others naked so I had no intentions of an assist with showering.

It did not take much for to convince this nurse. She easily let me close her out with the curtain but only after being certain I  saw the call button. Standing on the other side of the flimsy barrier she really wanted to stay but I would have no part of that. I wanted privacy.

Only once I agreed I would ring when finished, did the nurse depart.  My privacy from a nurse I actually trusted was more important than the jeopardy of once again being left alone, now naked and all the more vulnerable in a place and circumstance I never would have continued safe under normal circumstances. It may not have been clear to me at the time, but I was definitely making decisions I was no longer qualified to make. If I was not harmed by such it was only because no one who might be trolling for such opportunities happened by my door that day. That would not always be the case.

To be continued.......

Realizations.......

A Return to the Journey of 2011...Troublesome Perceptions

 Part 1
Of course my enthusiasm about the impending shower was definitely naïve. It had been so long since I'd experienced the luxury it was all I thought about. Had I considered the fact I had little enough strength to walk unattended, nor had I seen a shower within the scope of any of those walks,  let alone I was expected to repeat the event three times a day for fifteen minutes each,  I probably would have been not quite so enthusiastic.  Surely I  would have made some different choices when asked by the nurse about my preferences along the way.

I have always been unwilling to admit weakness. Even as a child I was trying to prove my strength and ability and that has never ceased. I guess that explains me starting my own horses even in my sixties among other things.

Now despite my weakened body I was unwilling to admit that anything had changed. Even noticing the muscle wasting had only a superficial effect on my expectations of myself.  I refused to think I was anything but the strong, independent woman I have become over the years, yet in this current reality   I was a frail, geriatric patient. My decisions were based on that false perception and unfortunately none of the nurses questioned those choices.

When asked if I wanted to walk or take a wheelchair, I chose to walk even though I had no clue how far it was. Fortunately I did make it to the shower but not without some assistance from the wall and the attending nurse.  When asked if I wanted a chair for the shower I was able to see the need but only because that question was asked after we reached the bathroom with the shower. My limitations were clearly apparent at this point since my body quaked and my knees threatened to buckle.  As the nurse vacated the room to locate a shower chair, I dove towards the toilet to catch myself lest I fall. 

Luckily the commode was positioned right next to a half wall that formed part of the shower. I was so exhausted from the walk I didn't have the strength to support myself upright, instead I leaned against that wall and rested as I waited for the nurse to return. Luckily it took her several minutes to return so I had a little time to recoop enough so I could even get to my feet again. As I sat there waiting for her return I wondered how I was going to be able to manage this shower when I had barely managed to make it there.

To be continued.........

Vulnerabilities

A Return to the Journey of 2011...Trying to Get Home

  Part 1

After that second surgery, once the doctors knew my plumbing was working properly and that the second ostomy was thriving, the only thing keeping me from discharge was stabilizing the gaping holes that had opened in my abdomen.

I think at first I was oblivious to those holes buried underneath dressings. Just as I didn't want to see my ostomy, I didn't want to see the evidence of how the surgeon's knife had decimated my body. The pain that ravaged it and the exhaustion accompanying the pain were all that I could handle. I left the surgeon and nurses to worry about the rest. As they poked and prodded I looked at the TV only paying enough attention to answer questions if asked. I was just trying to get through each day until I could get out of there. All I thought about were my horses and my family and how each day longer I stayed affected them.

It wasn't until the surgeon ordered a wound vacuum that I realized the state of my incision. There had been nothing alarming in their demeanor when tending to me so my lack of interest in actually seeing what lay beneath the bandages had shielded me from knowing this new complication had been developing. The minute the machine arrived and the nurses told me what it was I knew.

A friend of mine had experienced an extensive visit with a wound vacuum so her story provided me with all I'd ever wanted to know about this modern technology. I understood how it was supposed to work and that it was reserved for only the most difficult of wounds. I also knew it was cumbersome and that being hooked to that machine would make getting around more difficult. I was not looking forward to being tethered to that thing for any length of time.

As luck would have it I didn't have to worry about that. My body evidently didn't think much of the Wound Vac either. Despite the fact it had been only 12 hours since its use began when my surgeon checked me again, the condition of my wounds had deteriorated at an alarming rate, so concerning the surgeon, himself, removed the system's tubes instead of waiting for a nurse to find the time to get it done. He left me muttering about going back to basics and Hail Mary's.

The basics turned out to be flushing the wounds with warm water for a fifteen minutes stretch, three times a day.  Considering the location of the wounds the only way to get that done was in the shower. The challenge was accomplishing it without getting my ostomy bag wet, well that and me having the strength to do it because I sure wasn't going to allow some stranger to do it for me.

By this time I had been hospitalized for twenty-four days and I had never seen the inside of a shower. Heck, by now I had only had three sponge baths and no one had ever suggested there might be another option available. While I wasn't looking forward to fifteen minutes worth of dealing with the reality that was my abdomen, I couldn't wait to feel a steady stream of warm water washing over me and having a real shampoo.

To be continued.....

Troublesome Perceptions........

A Return to the Journey of 2011...An Extreme Arftermath....More Angel's Care

  Part 1


My angel on the night shift did not work nearly often enough for me but those few nights she did were the best of my hospital stay. Maybe because I learned to trust she could actually help me when everyone else failed, I could feel my body begin to relax when she first entered the room.

Not all nights began as that first night had. I remember one night particularly when in her cheerful way she asked me, "Would you enjoy a bath?"

Even though by this time my hospitalization had been at least two weeks, I probably had only had a sponge bath or two. Only requiring someone to draw water in a basin and fetch towels so I could do it myself, nurses so short staffed they were not meeting other basic needs meant a bath was practically unthinkable. The only time they happened was on the rare occasion a nurse looked at me long enough to realize I was pretty disheveled AND that nurse actually got the chance to get the components together before she was interrupted. With that kind of record, I jumped at the chance to get clean, have my hair washed, clean clothes and bedding.

Careful to assure I did not get chilled which would increase my pain, this nurse reshaped and rewrapped my warm cocoon in such a manner she could expose one part of me for washing while still protecting everything else in healing warmth.

She was so proficient at this task she effortlessly and quickly sailed through rearranging and moving on from one portion of my body to another without me ever experiencing even a wisp of a cold air or draft. How she managed to do this while including a thorough massage of each exposed area still eludes me but I remember the tension that accompanies extreme pain melting underneath her fingertips.

I really thought washing my hair would be a big obstacle but a waterless, rinse free shampoo cap with built in conditioner, warmed first in the microwave, made for a luxurious hair cleaning accompanied by a thorough scalp massage. The whole process left me feeling not only clean but thoroughly pampered.

My nurse even offered to blow dry my hair but exhausted from the bath I opted to have my wet hair carefully wrapped in multiple layers of warm towels so I could drift off to sleep before the tension of pain reclaimed the extremities of my body.

I remember as I lay there drifting off to sleep she was still bustling around the room putting things in order. All the while she sang softly to me, checking from time to time to see if I was asleep. If I wasn't she would ask if I had song requests. I don't think there was a single song or singer or group that I requested that she could fulfill and her voice was a beautiful as the rest of her.

Later I would think about this nurse and the manner in which she accomplished so much, in so little time and find myself wondering if her mood and efficiency were not somehow a little bit manic. However, that was never a concern nor a criticism for me, only me wondering how she managed to accomplish so much, in so little time and still be so cheerful.

Regardless of how she did it, I will be forever grateful. I learned some very useful tips to help minimize the effects of the ravages of extreme pain that have plagued me. She has helped me survive when those responsible for my care have let me down. I will never forget her.

To be continued......

 Trying to Get Home

A Return to the Journey of 2011...An Extreme Arftermath....An Angel in the Nighttime

 Part 1

I still remember the night I met this nurse. As I recall  had been asked before I was ever removed from my room if I would be willing to try whatever she might ask of me. I was so desperate for any relief I would have done anything short of murder(figuratively of course) so I agreed having no idea what was in store for me.

Just thinking of that night causes my face to contort as my body remembers the pain that was far off any chart. People have left this life unwilling to tolerate far less. I knew that from comments overheard as nurses searched for some kind of solutions for me. I doubt that time will ever dull that memory, it is so burned into every fiber of my being.

My body is not all that remembers this night and this nurse. Every time I think about I remember the emotions elicited by that pain. Never in my life have I pleaded more to be saved, nor have I felt more hopeless, yet the only word I shared with her was, "Please" as my twisted face and tortured eyes looked up at her, telling her all she needed to know.

She was a beautiful woman, tall and thin, dressed in pastel scrubs. Her blonde hair framed a sweet, angelic face that did not reflect back at me the darkness she saw emanating from my own. Despite the intensity of my pain and the lack of relief I had experienced up until now, there was something calming in her demeanor even though I didn't dare hope.

Everything about her spoke of caring as she ever so gently swaddled me in layer upon layer of warm blankets. By the time she was done the only part of me visible was the upper portion of my face. I don't know how many blankets she used but the fabric around me was so dense I couldn't see past the blankets to find my toes nor could I feel the usually painful surface of the bed. The whole conglomeration must have looked like one gigantic cocoon.

One that task was done she massaged the exposed portion of my face. While she did this the warmth of all those blankets began to conquer the bone chilling cold that seemed to accompany my pain. That is the last I recall of my first night with this nurse.

 I do remember being awakened at 5 am for a blood draw and suddenly realizing I had actually been sound asleep for the first time since this whole nightmare had begun.

To be continued...

More Angel's Care

A Return to the Journey of 2011...An Extreme Arftermath....

  Part 1

Hope was not the only thing leaving me. This extended hospitalization was causing the wasting away of my body.

I watched in horror as well toned muscle gradually was consumed by starvation and inactivity. What tissue I had left was flaccid and meager. I was quickly changing into a walking skeleton, even the walking could not be done except in short duration without assistance.

My boney frame had to be supported even in bed.  Many pillows positioned just right between me and the surface of the mattress were required to keep pressure sores from forming at all the angular points now developing on my body. Sometimes it would take nurses a half hour or more to get the pillows placed in a manner that did not cause pain.

Pain was my constant companion and all means to control it failed miserably the majority of the time.  It had been ongoing from the first surgery.

 The only relief I received was from the initial methods used during, and immediately after, the surgeries. Once those spinal taps were removed and medication was no longer delivered straight to my central nervous system, pain racked my body.

Nighttime was always the worst. By the end of the day I literally  walked in my bed unable to lay still. Instinctively in perpetual motion, trying to distract myself from the crippling pain that seemed to be devouring me.

My pain so extreme even the most jaded of nurses found it difficult to care for me without choking back tears before they could flee my room. I heard evidence of this in their voices or glimpsed the moisture on their faces. It was very clear I was not the only one frustrated by the torment I was experiencing.

My body seared with fire emanating from the site of my incision and spreading throughout my entire central nervous system.

Like that burning pain was not enough I also felt another kind of pain but this type was much more difficult for me to describe. I had experienced this type before back when I was 18 and nearly died from peritinitous during a 45 day hospitalization.

 I always struggled with the words the nurses would use to question when asking me to describe my pain since words like pressure, sharp, dull,etc did not describe the feeling I was still then, and do still now experience. My abdomen felt like someone was trying to rip guts out. How would you explain that in the terms presented on a pain chart?

To be continued......

An Angel in the Nighttime

A Return to the Journey of 2011... Choices or Nightmares?

  Part 1
The surgeon, Dr Kenneth Feucht, who did my initial surgery is the head of a large practice of cancer surgeons and considered to be an innovator in his field. He had not been pleased he had been unable to save me from having an ostomy in the first place. Then when I had experienced the first complications soon after surgery he followed my care himself even though he was leaving the country in just a few days.

When my hospital stay stretched beyond what he expected,  he was forced  to leave me in the care of an associate, Dr Petty,  telling the man he needed to take special care of me since I'd already been through so much. Dr Feuchct didn't want to hear anything else had gone wrong. Then he told me he probably would not see me again since I would be long gone before he returned from his trip.

In hindsight that was one of those things that seemed simple enough but that's sure not how it went. There's no way he could have even imagined things would go so terribly wrong.

 It was the day after Dr Feucht left when the embolism shower occurred. I guess you could say that gave me a chance to build a rapport with the second surgeon. As much as I had hated leaving the surgical ward for the CCU, he was the one constant during that time. He checked in one me every day except weekends and he always introduced his weekend replacements so I never had a day with a strange surgeon. Thankfully though, the day of my second surgery Dr Petty was in charge on my case. There was some comfort going into the second surgery with a surgeon I actually knew well enough to recognize his name, face or voice.

I've never quite understood how blood in the ostomy bag indicated that my ostomy had failed but that is exactly what had happened. Dr Petty took one look at my ostomy and the skin around it and surmised the tissue was dying and my condition was once again critical.

Before the surgery I was told it would be a simple procedure that would not take long. Afterwards I was told the surgery had not gone as planned. It had taken nearly three times as long as he's expected with a considerable amount of cleaning up to do but everything now looked good and I should be back on the mend.

Actually he didn't need to tell me there were problems with my surgery. I knew when I found myself looking down on my still body with tubes and machines all hooked up and doctors and nurses speaking in concerned tones that things were not good.

This was actually the third time in this hospital stay that I had this experience. Each time it seemed to get more defined. The white light I saw became closer and closer and it got to the point I could see a tunnel. I could hear voices emanating from the tunnel and there were forms of people standing off in the distance. I remember felling myself pulled towards that tunnel like so vacuum was sucking me in.

I wondered if my beloved grandfather was one of the people beckoning me. As soon as that thought entered my mind I began to panic. All sense of serenity left as I thought "NO! NO! My horses! I cannot leave my horses!"

Then it was black again until I regained consciousness in the recovery room. This would not be my last experience with the white light and the face of death.

To be continued...

The Plot Thickens..........

A Return to the Journey of 2011...Another Set Back

  Part 1

I haven't talked much about my ostomy. It was a painful thing both physically and emotionally. I couldn't handle it and all that it implied which is probably why it is a subject I have ignored.

I drove the ostomy nurses crazy because I wouldn't even try to learn to change the darn bag. I couldn't even look at the darn thing without my head spinning and the room going black. How was I supposed to clean it and touch it?

Of course I couldn't leave the hospital without provisions to care for this new, painful part of my anatomy. My solution to this problem was to have Dave care for it for me.

I'm pretty sure the ostomy nurses thought I was crazy when I told them of my an but they didn't know what I did about my husband. He had been the one to care for Lindsay's Hickman catheter back during her cancer treatment when I had reacted to that line protruding from my daughter's chest just as I was doing now to my own cancer aftermath. Dave hadn't even blinked at my request for him to care for Lindsay's line all those years ago.  I was confident he would willingly, once again, save me from a reality that was too much for me to handle.

Of course Dave never even flinched when I made my request. He asked when he needed to be at the hospital for his training in proper ostomy care and that was pretty much it.

Still the nurses were definitely concerned and kept trying to push me where I could not go until they actually met Dave. The three lessons they were convinced he would need turned out to be just one. My husband handled the reality every bit as smoothly as he had my request. To say he wowed the nurses would be an understatement and frpom that point forward I had no more issues with them trying to force me to handle a situation that caused such an extreme reaction.

The only problem had been that right from the start the ostomy nurses did not like the look of mine. Repeated comments were made about the tissue not looking right but the surgeon didn't seem concerned so that was it until my trip to the bathroom before I planned to leave for home.

As much as I could stand looking at the thing, I couldn't stand anything sitting in that bag. Because I felt intense pain anytime waste was getting close to being eliminated, I was acutely aware  of the arrival of material and I was always quick to see it didn't stay.

That is why I headed for the bathroom on that fateful day. Once inside I realized something was seriously wrong. The ostomy bag was filled with blood. No way was I heading home so I returned to my room and called a nurse.
The startled look on the nurse's  face confirmed my suspicions. She said she needed to call the surgeon. Two hours later I was on a gurney headed back to surgery.

As much as I needed a horse, I wouldn't be getting near one anytime soon. I laid on that gurney wondering what would become of them with my health deteriorating more each day. That question haunted me even as the drugs began to steal my consciousness so the surgeon's knife could once more split my abdomen from stem to stern.

To be continued......

Choices or Nightmares?

A Return to the Journey of 2011

 Part 1
So there it is.....I thought I was opening a new chapter filled with promise and instead the bottom fell out. I was hospitalized and diagnosed with colon cancer and the roller coaster ride began. Next month it will be two years since it started and there are no signs it will be over any time soon.

The series of posts about my hospitalization only got through my diagnosis with a pulmonary embolism before the posting was cut short by more complications in this journey. Reading back over the posts to see what I have written and I am surprised at all I have forgotten.

I have never been able to write a story from the middle. There is nothing simple about life and so many times the answers lie in the details. I know in this journey that has definitely been the case. What has happened to me over this time  was definitely influenced by events early on  so I think to do justice to the story I must pick up where I left off in the critical care unit........

I thought I understood the scope of my pulmonary embolism when it happened but within the next couple of days that perception changed. A first I thought  I had a clot in one lung. Next it was a clot in each lung but finally I grew to understand that the clots in my legs had thrown off hundreds of smaller pieces that had lodged in both lungs.

 It is called a shower embolism and mine was as deadly as it gets. My survival had indeed been one of sheer willpower because the blood vessels in my lungs were so clogged with debris I should have been getting no oxygen at all.

As I laid there in the CCU I pondered the facts I had dodged two bullets in just three days. Again my mind went to my horses and what would become of them if I didn't come out the other side of this.

All the things I should have done to ensure their safety haunted me as I laid there. I began formulating plans based on three different outcomes, death, disability or return to full health. The only question was a timeline. When was the right time to give up on my life, my health, my dream?

Not the best way to ensure a positive outcome, I'm pretty sure my doctors would say but then they are not me. Knowing my horses might end up in jeopardy if I didn't survive only made me more determined to beat whatever came my way and it's a darn good thing it did because the challenges continued.

If my memory serves me it was after the PE, my gut shut down. I ended up on TPN to keep me alive as they waited for my plumbing to kick back in. To be honest at this point I don't recall how long it took for that to happen but it was long enough I dropped around seventy pounds.

Within a couple of days of me regaining gut sounds they were sending me out the door. My discharge papers were signed and I was even dressed in my street clothes when I decided I needed to hit the bathroom first. Little did I know that little detour would result in another face off with death and this was just my first trip to the hospital.

To be continued.......

Another Set Back