Shaking the Core

I’m a big talker.  I’m full of wonderful counsel and advice for other people and I can wax on eloquently about the things I have learned over the last few years and how I have successfully incorporated those brilliant discoveries into my own life.  

Over the last few years with Marty’s illness I have tried to develop a simple mantra for dealing with huge life and health issues:  take it all day by day and issue by issue, don’t borrow trouble and never ever climb the ladder of inference making something into a catastrophe.  

I had done so well.  I had intentionally moved from thinking too far ahead to simply living in the moment.  I had made the mental shift from worrying about Marty and her health and her death on a daily basis to rarely ever worrying about what I couldn’t control.   I was rock solid and prepared for the vagaries of catastrophic illness.  

And then we started the hospital carousel again.  I realized I had done a world class job of kidding myself.  

My fitness muse, Gretchen (the perfect name for a fitness muse), from time to time, for her amusement and my good health, has me stand on two inflatable discs.  They are about four inches high, about the size of a really large plate and only partially full of air.  They aren’t stabile for a big guy.  She then hands me a 20 pound ball and I’m supposed to sling it from side to side or crouch down and touch the floor with the ball 20 times all while balanced on air filled Frisbees.   Theoretically the exercise helps with balance and increases core strength.  

I can do this exercise, unless I lose focus or if someone simple pokes me, then I fall off the inflatable discs, Gretchen laughs and I start over again.  It’s requires focus, balance and strength.  A gentle push and I’m off.

I really thought my emotional core, my psyche, was prepared for our somewhat fluid future.  I didn’t really understand how little it would take to push me off of my core principle of not burying Marty every day.  

Marty’s daily fatigue and recent multiple hospital stays have pushed me off my core.  It feels like I am right back where we were six years ago, worrying each and every day about life and death and focusing on nothing but the end of Marty’s life.

I go to sleep at night worrying about what is going on with her.  I wake and before the morning fog in my brain has lifted the worry starts to wrap around my mind.  I find myself wondering what’s happening, always wondering in the back of my mind if this is the start of the final decline. 

It feels like going backwards.  Hell, it is going backwards.

This type of thinking paralyzes, this type of thinking breeds anxiety, this type of thinking creates dangerous and magical thinking.

I find it harder to concentrate, I find it harder to plan, I find it harder to walk out of the door and participate in life with or without Marty.

My daughter-in-law whom we love sent out an e-mail the other day to start planning some birthday celebrations over the next couple of months.  She is an organizer and I love that in her, it helps me and my extended family immensely, but all I could think of when I got the e-mail was, “I don’t know”, and then nothing.  I couldn’t engage because I couldn’t get past the last couple of months of illness, because I couldn’t erase the overall feeling of dread that has me surrounded.

The feelings surprised me.  I thought I had this figured out, I thought I had my core set and steady and ready, I felt like I was standing on the air filled discs with a solid athletic stance ready for any distraction.  Turned out all I needed was a little push, a little medical drama, to fall off and drop the ball.  

Hey, I’m still full of confident advice.  In Texas speak, I got me some knowledge and I’m ready, to quote Marty, to “Let me tell you how to do that”, or to put it another way, I can tell you how to do it, I thought I could do it, I just haven’t been tested in a while and it’s not that easy.

Maybe it’s just a new awakening, a new understanding of our life.  Maybe it’s just our life’s way of saying don’t get too comfortable, don’t think you got this shit figured out, because as soon as you do something happens to remind you how delicate life is.

Moving forward is the question, it’s always the question, how do you do it.  Clearly the whole one day at a time thing has merit, for us, it really is a key part of living “normally”.  

I have to find a way to get back there, but more important, I have to understand that our life will never be without fear, without anxiety, it is a life, that at times, will be full of both.  It’s also a life that is full of love, full of companionship, full of many amazing moments.  

The key, the core, is to see those moments and embrace them.

We Left

We're home.

Thursday was coming and going and I had already assumed we would stay at least one more night when Great and Wise popped in to talk.  The rash was better, the blood pressure was better, Marty was better and he thought we were out of danger and could go home.

Solu-medrol is a steroid that works wonders for a number of things, including allergic rashes.  Marty had been mainlining the juice for a couple of days, it had helped the rash enormously, but it had her wired and talking smack.  She had been saying all day she was leaving.  I guess she was right.

We got home that evening and Renea, Marty's caregiver, showered the hospital gunk off Marty and let her sit in her chair in the living room while I went and secured Renea and I some less than healthy fast food junk.  Marty had been fed at the hospital before we left.

By this time Marty, still fired up from the Solumedrol, was giving instructions and telling Renea and I what she would and wouldn't do.  Her rash was better but still there and she kept trying to scratch herself, no easy feat for someone with limited capacity in one arm.

As it turned out Marty stayed awake all night Thursday night.  She kept thinking she needed to get out of bed and she kept thinking she could get out of bed.  She normally can't use her left leg at all but Thursday night she kept moving both legs to the edge of the bed.  Renea finally relocated her to the center of the queen bed and Marty was not happy about that.

The half life of Solu-medrol, the time it takes to leave your body,  is 18 to 24 hours.  At about the 18 hour mark Marty finally succumbed to fatigue and fell asleep.  She slept for three hours, woke up with the residual effects of the steroids still driving her a bit.  She ate supper in bed, was showered again and went back to by 9 pm and asleep again about 10 p.m., completely exhausted.  She wasn't alone, I was pretty tuckered myself and we both slept all night.

Saturday and Sunday things moved toward normal. Today, Monday, we did all of the regular stuff plus we visited some pretty cool folks at our church.

She is still pretty tired and a little weak from the whole ordeal but I am pretty confident we are on the right track.

We have tumbled to the conclusion that the rash and low blood pressure, the reasons for the hospital visit, were caused by the contrast dye from a cat scan taken on the Saturday before our hospital incarceration.  That was the ER visit I initiated because of her fatigue and my anxiety level.

I guess that means this one was my fault because I took her to the ER to be examined and when they asked me if she had ever had a bad reaction to the dye I said no.  Guess what, I'll have a better answer next time.

Marty and I appreciate all of the feedback, the support and comments from our latest misadventure.  I read all of the comments to her and it's the closest I have seen her to tearing up since the stroke kind of broke her emotional center.  She was genuinely touched by the kind words, thought and prayers.

Thank you, this really sort of answers my questions about calling someone.  I will do better in the future Sue.

Hospital Update

We are still in the hospital. 

Marty is actually doing well, still itching a bit but the benadryl, itching cream I can't spell or pronounce and steroids really seem to help the rash. 

We now have a really nice gastro guy and infectious disease doc working with our own Great and Wise.  All of these really smart people are putting their heads together to figure out the rash and the associated low blood pressure.

I personally am assuming all of this is related to the contrast dye they used Saturday to scan her lower abdomen.  At least that is what makes the most sense to me. 

The steroids have Marty really wired so she is awake, alert and loquacious chatting up all of the nurses, respiratory therapists and caregivers.  She sometimes gets going so fast she loses her place but that's okay with me.

I'm not sure when we are destined to head home.  I suspect after we are sure of the rash and a couple of other things happen we will be excused.

Today, Marty is doing okay.  She hates the hospital, it is exhausting for everyone involved but we are making it.  She, I, we, appreciate all of the kind thoughts, prayers and good wishes.  Please keep them coming and I will let you know when we blow this joint.

PS....I have had a lot of down time so I have been jacking around with the format of our blog....who knows, if we stay here much longer it will change again...

Making A Call

I never really know who to call or if to call anyone.  I know to let our children know, I know to let my parents know, but beyond that, I’m never sure who to call and say we are in the hospital again.

Part of my reluctance is that I really don’t want to bother people, part of it is I never know how long or serious and one event is going to be and a big part of it stems from my west Texas machismo, that I don’t need support because support means weakness and real west Texas men don’t need and don’t do weak.  Mostly I just don’t know how much others want to know.

We went for 3 years without being in the hospital.  When Marty went in February it was different so I reached out to some of our friends.  Since then, since last night, this is our third visit and I just don’t know if people want to know every time we darken the doors of Providence.

We went to the emergency room to have Marty checked out Saturday, mainly because she was really fatigued and my anxiety level was in the red zone.  We spent seven hours getting blood tests, urine tests and x-rays and essentially found nothing.  My anxiety went below the red zone, but not by much.

I went to Dallas Sunday during the day for my middle grandchild’s 2^nd birthday celebration.  My daughter Erin said I seemed tense; my response was “ya think?”  When you have lived with someone and watched them as long as I have cared for Marty you just get a sense of things, it’s hard to explain, but my “Marty-sense” was tingling all day Sunday.

By the time I got home Sunday evening Marty’s blood pressure had dropped and we piled into the van to take Marty back to the ER.  By the time we got there her BP was still too low and she had started to develop a rather ugly red rash, great.  I sent a text to our Great and Wise as we waited for a room.

There are a limited number of things that the rash could indicate.  A couple of things are not good at all, but it’s most likely a reaction to an iodine IV administered when she had a cat scan on Saturday.  The tech had asked me if she had ever any reaction to the iodine, I didn’t know and rolled the dice to get the x-ray.  Marty got the rash, that’s somehow not completely fair.

Great and Wise, bless his soul, came up to the hospital to check Marty out and in and wrote out the orders to admit us to the hospital.  There was never any real question about whether we were staying the night in the hospital.

As we sit here this evening Marty is a little doped up on Benadryl, her face, neck and abdomen are red with a rash and her blood pressure is still too low for me to feel comfortable and I don’t think we have figured out everything that is happening. 

Yes, we are back, 4^th floor east, and I’m up here wondering who I call, I’m wondering if I call, I’m wondering if people want to know, I’m wondering if you do this enough do people get a little immune to the seriousness of the situation and the call becomes a “one more time” kind of thing. 

Try as I might to get used to it, I don’t.   I still get anxious, I still worry, I still don’t sleep, and as many times as we go, as prepared as we are to go, as crazy comforting as it might be, being in the hospital is still a big kind of scary deal.  

Maybe calling some people is not a bad idea.

 

DNR

The world just keeps spinning, even when you can’t spin with it. 

 

As I stepped out of the emergency room to breathe in some hot night air I saw a couple of cars drive by. I thought, “I wonder if they know how lucky they are, I wonder if their life is as simple as it seems?”

My head wasn’t in the mundane which is really the meaty part of living.   All of my focus, all of my energy was on the little monitor above Marty’s head, the monitor that shows her oxygen levels, the monitor that shows her beating heart, the monitor that shows her blood pressure way too low.  All of my focus was on the next blood pressure reading.

That was Friday; we came home from the hospital Monday.  Marty had another infection, an infection that came suddenly, without precursor, an infection that weakened her and pushed her compromised system too hard.   

Marty is feeling better and all signs point to recovery from this latest event.  Guess what, I’m not really ready to dial down the hyper vigilant mode.  

That Thursday Marty had just shown signs of getting back to normal for her most recent UTI.  On Friday things changed, she had been tired all day.  She seemed to feel good when she woke up that morning for breakfast but after that, pure lethargy.  She was tired, sleepy and complained about a bad headache.  It was late in the afternoon that her blood pressure started to drop.

She and I ate supper alone, together, as I watched her every move and quizzed her to get some sense of what was happening and if what was happening was bad enough to ring the alarms.   We watched the news as we ate and watched as the world kept spinning.

I had already been on-line and made a reservation at the emergency room we frequent, “just in case”.  I told Marty I would check her blood pressure one more time after she drank more fluids and ate some supper.  We ate, she drank, I did, and it was too low and the decision was easy, we piled into our van and drove to the ER with me looking in the rearview mirror at Marty too much.

We got in quickly and were in the system immediately, her blood pressure still trending down.  I have to say it never felt fatal; it never felt like Marty was leaving, but maybe I wasn’t being realistic. 

Marty’s blood pressure was as low as I had seen it and her persistent complaints of a really bad headache brought back the nightmares of the ruptured aneurysm.  It had been eight years but here we were in the same ER, it felt like history repeating a very frightening memory.

Tests were done, blood was drawn and urine was procured.  A chest x-ray was clear and best of all a cat scan of her brain was clear save the damage from the previous strokes.  Her blood pressure was awful but she wasn’t bleeding in her brain again, that left a tenuous sense of relief.

The blood tests did reveal an infection and fluids were administered to prop up the blood pressure and dilaudid was given to help with the headache.  Marty slept.

While the world was turning outside of Providence ER, while those wacky Kardashians were setting social standards, while my daughter-in-law whom I love was driving home from Austin, I sat with Marty’s doctor, who is also her friend,  in the ER talking, answering questions, answering THE question.

I hate the question.  I hate the thought of the question.  I think I know our answer to the question, the answer Marty and I have talked about before her strokes and since the strokes.  I think I know our answer.

Great and Wise wanted to know what we wanted to do if Marty’s heart stopped.  It wasn’t a capricious question; it was a serious question from a loving man in a serious situation.  Marty was weak from some unknown infection and her blood pressure was precipitously low.  We were up against it and it wasn’t a theory. 

I gave the answer, I hate the answer.  I started to doubt my answer as it came from my mouth.  “We let her go, “I said quietly.

As the world continued to turn, as people necessarily went about their lives shopping, cooking, kissing, holding each other we were in an emergency room in Waco Texas talking about end of life decisions, this can’t be our reality.

For me, it’s an easy, clinical decision…..if it is someone else we are talking about or we are just sitting around talking and theorizing.  But it’s not theory, it’s not someone else, we were talking about Marty and we were confronting reality once again.  

When they put the purple wristband with the initials DNR on your loved one it becomes a made decision.  Doubt, recrimination, self-criticism was and is almost overwhelming.  How can you say, “Just let her go….”

I have to be reminded that Marty is not afraid of dying, that her words, “It’s just another way of being” are true.  I have to remind myself that it is not about me, that it is about how Marty has always wanted to live her life.

It is not a onetime decision, it is not a spur of the moment decision, it is an evolving decision that stems from 40 years of talking with Marty.  It is a decision I know she would agree with, it is a decision that requires more courage and faith than I may have the next time.  

I don’t really care to think about the next time, I only know that the purple wristband symbolizes my worst fears and my hope that I really do know what is the best path. 

It’s really all about the hope.