Thursday, May 4, 2017

second chapter

I said before this may be too much information but it is what it is.

Now we are on the second course of the toxic meds that are supposed to keep the Myeloma at bay.

It's tough to see the rough times and the person who was once able to get up and go, just trying to keep out of pain by moving slowly and deliberately to avoid any movement that will cause some kind of pain.  At times there is no pain, but the brain is so accustomed to feeling the pain it's like a phantom pain is there. 

That was the first week of the second course of this toxic medicine.  We are now at the end of the second course.  The hot flashes ( really the opening of flood gates from all the pores in his body at the same time- soaking all the clothing he has on and using small towels to stop the flow of water rivulets that pour from the top of his head...that's no exaggerating....Enough pours off that he needs to get hydrated by IV) seem to have slowed but there are still lingering side effects that may cause a change in the medication.  We are now facing going to the oncologists a couple times a week to get sort of an infusion of a different drug (I'm sure with all types of other side effects we can look forward to).

I know chemotherapy is the pits, and for a lot of folks it's a lifesaver.  The problem as I see it is this; the theory is the toxic chemicals will kill or chase away the cancer for a period of time, but it's all dependent on so many factors.  Many of those factors are based on how much of the side effects each person can endure.   Sometimes the chemicals will kill off the Cancer cells for good, and that's what everyone hopes.  But the reality is, it's a crap shoot... If luck is on your side you have a good chance. 

When he was first diagnosed I had so many people ask me if we were going to go to the Cancer Research Center, Dana Farber, the cancer center in Texas for another opinion.   Well, here's what I told everyone...I did lots of research on my own, spoke to a Myeloma specialist, went on the website for Myeloma, checked out the pharmaceutical companies blurbs, you name it, between my daughter and I we did out homework. 

This type of cancer has a regular protocol.  Yes, there are lots of new studies and ideas about this cancer, but the bottom line is not everyone will be able to take new drugs, or they may make them sicker.  It depends on so many variables... If you are diagnosed with any cancer and you're pretty young, you may have a better chance but then again...if you're older and have lived through some of the other health issues as you've gone through life, you may have some antibodies that will help to kill off some of these cancer cells...then again...maybe not. 

You usually don't get anything definitive from the Oncologist's either.  They know better than to give false hope, no hope, possible hope, whatever.  They end up giving you the same information you've gleaned yourself from your research... That's the God's honest truth.

There's always hope.  People will say that all the time, and they are absolutely correct, there is hope.  You can ask everyone to pray or send positive energy, Reiki through cyber space all sorts of things, and some of it may help, so go for it.

We are hanging in and doing things as they come.  I have a neighbor mowing my lawn right now.  There's another neighbor doing my raking in the front yard.  I can only do so much and yard work kills my back so the neighborhood has taken it upon their hands to help out where they can.   I have another neighbor making a platform for Larry's recliner chair to raise the height to make it easier for him to get out of the chair.  He's moved from a wheelchair to a walker, so that's progress. 

Starting on Monday we will be going to out patient Physical Therapy. That will at least get us out of the house and we'll be able to see other walls rather than the ones in this house. 

It's not easy, and for me it's a struggle, but it is what it is...

I am blessed to have people helping me with everything.  I couldn't do all this on my own it's just too much...

Karma is great....for so many years I've tried to help out other people, now I'm getting my rewards.

Friday, April 21, 2017

Maybe too much if it is stop worries

I see by the dates the last time I wrote something...almost totally something was in January....Now here it is April... Lots of changes have happened in a very short time.  None of them great changes, but after all the only constant in life is change so I guess it's the way it is.

At the end of January we were going to Doc appointments to see why Larry's back was giving him so much trouble.   There was talk of muscle tears, tendon pulls, you name it. The Primary Care Doc wrote a prescription to have him go to Physical Therapy (PT). So, that same day we headed over to the local PT office and signed him up. 

He did that for about 6 sessions and things were progressing horribly... After going back to the PPC again it was decided he should have an MRI, that day.  He was unable to lay down at that time so the screaming in the MRI machine was incredible. Somehow he, and the staff managed the test and he was wheeled out in a wheel chair to my waiting car.  The drive home was very difficult and painful for him, and me as well...

The next day was worse but we had to go to the Doc to see the results of the test...  We had taken one of the other tests to determine what was going on and those results would be there as well.   The PPC was very sure we were dealing with MM (Multiple Myeloma) and it was a treatable, albeit not curable kind of cancer of the bone/blood. 

That was the beginning of what has become a long arduous journey of Docs, meds, nurses, hospitals and new vocabulary lessons.  The internet was a great research tool and there were many resources to get more information about a disease I had rarely heard about.  Although, I knew Tom Brokow had retired as a result of contracting MM. 

We had more Docs to see. This time they were Oncologists and Radio-logical and an assortment of other technicians and lab workers...

The fun began...

to be continued

Thursday, January 5, 2017

Listen may learn something...

This blog and others I write I write quickly with rarely any thought to proper grammar or spelling.  These are "off the cuff" no holding back...They are what they are...


In the past I've written blogs concerning things I see on a daily basis.  Sometimes they're funny and I try to convey that in the blog.  At other times they may be observations of how I understand things.  This is one of those, not gloom and doom but reality of things that you may not understand or never have to deal with in your life. 

I've been a student of psychology and sociology.  My specialty was in the field of "Aging, death and dying".  I read all the literature I could get my hands on about the psychological process of grief.  How it affects the brain, how the physiology of the body reacts to stress, how seemingly simple tasks are overwhelming to the grief stricken.  Yeah, right.  Let me clue you in to the reality of this stuff from my new perspective.  I feel as though I'm doing a PSA (public service announcement) to all the uninitiated.  No kidding.

First of all, the books that are written about grief give you a glossed over version of what the person writing about the grief thinks.  That person usually has some notion of the workings of grief but they can't know what you or anyone else is going through.  They can surmise things but that's about all. 

Grief is a personal journey.  It's sure not easy and it's not something you can tell someone about.  Yes, you can give them the generalizations that everyone thinks about but not the nitty gritty.  Some grieve sincerely forever, never leaving the initial grief stage.  Some seem to bounce back shoving the grief into some dark recesses of their mind, hoping to bury it so deep as to never find it again (doesn't work by the way- it will get you in other ways-trust me on that).

I've been going to therapy, listening to the stories of others.  I thought at first, "What in God's name am I going to get out of this.  I've studied all this stuff ad nausea".  I know the theory.  I know what to expect. I understand what's happening to me.  I know what the next step is and I'll get through it sweat.

Was I too cavalier about grief? You bet.  Was I holding myself above the others thinking I knew more than they did? Of course.  Was I sure that I knew best? Yes, I did.  

The one thing that made me laugh (to myself) was when my daughter realized that I was a basket case and she was shocked to see her, "bad ass Mother (her words)" vulnerable.  That made me start thinking about other folks who have parents who they think are "bad ass", "tough", "capable" "with it", etc. 

Grief has a way of taking over your life.  You are dealing so hard with the grief you can't seem to focus on anything else.  You see things that have to be done but you don't give a rats ass about any of them.  Not because you're thinking about the one you've lost but you're trying to keep breathing, in and out ( and trust me that may be the only thing you accomplish of some days).  It's not depression, it's a sort of depression.  Granted, some may go into full fledged clinical depression but from where I sit it's not what I'm seeing.  I've seen the full fledged clinical depression, experienced even and I'm hear to tell you this is different.  I think there should be a different word used when "depression" is a result of a death of a loved one.  I don't know, maybe, "soul longing? unknown fear dwelling", something other than "depression".

Most people have no idea how tough it is to go through the day not knowing what that day will bring.   Will I break down in the super market because I see something my  kid loved as an adult, a kid?  Will I look at Gatorade differently because that was his drink of choice.  Will I see someone who doesn't know my son is dead and they ask, "So how is the family these days?'.  Then when you tell them they look as though a shutter has dropped over their eyes and they flounder to say something "profound".  (the best thing to say is, "I don't know what to say" covers it all.   The worst thing to say is, " OMG How did it happen?" that's usually their immediate thought. Then if they're really stunned they say, "Well, he's in a better place...".  No, he isn't, he should be here with his family and us...  The worst is when someone says, "OMG, I don't know how you're handling this, I'd kill myself". Yep, that's been said.  I know it's not meant to be cruel but it is. 

Most of us want to talk about our loved one.  We love to hear the stories of them and things they did that we may or may not of heard about before, it's kind of nice.  So don't be afraid to give us reminders of past things it keeps the memories alive and in some way the loved one as well. 

Well, that's it for me... I can write for a time but then I can become overwhelmed, as I am right now. 

This has been your PSA understand?

Thursday, December 29, 2016

2016 Be gone damn you.....

We are quickly approaching the end of a lousy year. Not just lousy for me but for multitudes of folks this has been a year with no comparison.  We've seen things happen this year that we've never seen, nor ever thought would happen. 

Our personal loss was horrific, something no parents should have to endure.  However, parents all over the world endure the pain of the losses of their children.  We all hope it won't happen to us, but for some of us, it does.

Our difficulties are continuing.  We don't ever know when we will break down.  We are aging rapidly.  The loss of our child hit us violently.  It's hit us at our most vulnerable. It's not held back.  It keeps jabbing at us and kicking us when we're down.
We seek counsel and hear the other folks talk about their emotions and how they handle things that are hitting them from stem to stern.  These folks may have a loss similar to ours but how they handle their own emotions, I can never understand, because I am not them, nor them me.  Yes, we understand the feelings of loss and we can sympathize but we can't know what their daily life is like without that loved one. We can barely understand our own daily life without our own loved one.

It seems that every week, no make that almost every day, there has been another celebrity or prominent person lost.  No matter who it might be it makes our loss more tangible.  We could have been in a good spot for a minute or two then we're hit between the eyes with something else tragic.  It puts us into another tailspin.

So I guess what I'm trying to say is: be nice to everyone because you don't have a clue what they are dealing with on a minute to minute basis.   They can show a facade of happiness and be dying in the inside.  They can look fabulous, even enviable, but be riddled with disease you can't imagine. 

 The losses to the universe as a whole are not all known to us yet. We'll see what happens over this next year. Things may not be as bad as we think they're going to be, but then again, there's no guarantee of that either.  I guess it's "one day at a time" to the rescue again for all of us.

For us 2017 can't come soon enough... 

Tuesday, November 29, 2016

The Search

The Search

I have always believed that persons who leave their vessels (bodies) manage to be in many places at many times.  When they first leave, their spirit hangs around to make sure everyone left behind is doing OK.  As the time goes by the spirit makes the transition for the living easier by enabling the loved ones to remember times that were once only a fleeting memory in a subconscious.  These long buried memories help the living to remember and move the forgotten memories into the forefront of the minds of the living.   It seems, at first, to be counterproductive for the living, but in reality it’s cocooning the living in a warmth only to be given by the one they’ve lost. 

As the time goes on, the living, with the cocoon of remembrances, feel the warmth and laughter they thought they’d never feel or hear again.  That’s when healing starts…It’s a slow process, but a needed process.  The spirit is always near at this time, waiting to see what to do to help the living adjust.  When the spirit feels the time is right, it lifts itself to a higher plain, still watching and listening, but allowing the living to get on with their life making sure the living is still cocooned in the memories and remembrances of the loved one they can no longer feel.  The spirit then allows the remembrances and memories to become lodged in the heart of the living and no longer in the subconscious of the brain.  

When the living puts their hand over their heart they can feel the essence of the loved one they lost and a calming will come over the living, telling them that “it’s alright, I’m still here and I’ll never be gone as long as you remember me”.

The time had come for the long trip.   The trip to find himself.  The trip to understand the why’s and what’s of his life.  He needed to go.  His yearning for answers could no longer be held in check.  He loved the ones left behind, but his pursuit of his truth was more than he could bear.

His car was packed, his survival gear categorized He was ready for the journey.  Mapping out his route he started on his quest.  It would be long, and arduous, but it was his time to complete this trip of a lifetime.

His pain was intense, both physical and psychological, but he was ready.  His friends and family tried to stop this seemingly disastrous journey stating it should not be done alone, it wasn’t the right time to be making this pilgrimage, and there were things to do at home and not the time to be going away.   None of that mattered to him.  He was on a mission to accomplish something that few would attempt.   He was a broken man physically.  A man who had always been the strongest, the most thoughtful and wise of his cadre.  This brokenness bothered him, it put him into a depression of sorts that could only be assuaged by doing the undoable.  He was driven.

His thoughts were to camp in remote places where he could commune with all he loved, the trees, the soil, the land the fresh air, the waters, the nights and days, alone, with only his own thoughts and prayer.

His love for God and his need to show God he was a man of faith, further lent fuel to the desire to make this journey. He was in God’s country, the unknown to him.  He was going to make sure he was one with the elements and come out a better person.

That was not to be…maybe.

Those left behind were worried when he didn’t contact them, but they knew he was on a silent quest and it wasn’t the first time he had followed his heart to seek out the answers to the questions in his mind.  He needed the time to think and “get back on track”.  They weren’t aware that he was “ on track” just not the one they felt he should be on.

Time went by, still on contact. What to do? Where to look?  Should we look? Would we be intruding on a personal quest? We sat and wondered if we were doing the right thing.  Should we have taken things into our own hands and stopped this journey? I said, “No, this is a personal journey we should not interfere.  Let him have this time but let’s give ourselves a date to start another phase”. Our decision was to “Let go, Let God”, hand it to a higher power knowing we were really unable to control anything at this point and to keep swirling around in a whirlpool of worry was not helping any of us… We gave it up.  We sat back and waited for a higher power to take over to lead us to our next step. It wasn’t easy to sit back and let the chips fall where they would, but it was the only thing and the right thing to do.

We would wait just 12 hours when the phone call came from a Detective in Iowa.   He told us his car was found in a semi remote area, but they didn’t find him.   A trail camera was installed to see if there would be any activity in the next few days.   It was obvious to the Detective that he had been camping on private property, a farmers land far into an area the farmer didn’t plant.  His car was in the open.  The farmer saw it and watched for a few days before calling it in to the authorities.  The farmer was worried about the person who was camping since he hadn’t seen anyone near the car.  He wasn’t angry at the person camping, he just thought someone should check on him.

The trail camera saw no activity after three days, so the searches were started in earnest.  We had to make missing persons reports in order for more intense searches could be made.   There were helicopters, dogs, volunteers, people we didn’t know nor maybe never would know looking in earnest for signs of him.  Two of his friends flew in to the area to help with the searches knowing they were more knowledgeable about him than the multitudes of strangers who had taken up the job of trying to find an unknown person. 

Rocks were turned over, camps were checked for signs of him, stored boats were flipped over, posters and flyers made and were given to everyone they encountered.  Some had seen him days before walking and riding his bicycle. Some had spoken to him and thought him to be a “really nice guy”.  He had been all around, but now was gone.

The river was high, higher than usual.  The rains had swelled the river to rise above its normal height.  The search was now on the banks of the swollen, raging river.   Signs of him were there: his water purifying kit, a boot print, and water bottles.  Where was he?  Did he fall into the river?  The search extended down the river slopes to the edges of the raging river.

On the other side of one area was an old quarry, still, dark, deep and cold, oh so cold.   The search and rescue changed to a search and recovery.  There are certain protocols that are adhered to in any kind of searches. 

The Detective overseeing this search was more than helpful in helping his two friends searching for him. He was a compassionate and caring man who was willing to give leeway to these two friends, he had never seen before this time in his life.  He felt the pain the friends were in and knew their friend was someone who was loved.  He let the friends do what they needed to do and didn’t try to stop them, just guide them.

The two friends along with the Detective came up with a scenario which could explain what had happened.  There was no proof other than what experience had taught the Detective and armed with the only physical evidence they found it was probably, not completely, but probable, accurate.

They found a boot print near the river and the water supplies.  There was a slide mark close by.  The edges of the river were steep and muddy.  He slid into the raging river was the thought.  It fit.  The river claimed even the strongest at times and swept bodies down towards the great Mississippi, we may never again see him.  That was the thought, but they didn’t give up the search…The friends had to return to their lives and the search would go on. 

We waited, and waited.  Worry over came any other thoughts in our minds.  We wondered how we could go on not knowing where he was.   How could we ever get closure?  I knew he was gone to another dimension.  I could feel him around me, but I’d never hug him again. I’d never feel his soft lips giving me a kiss before he left my house.  I’d never again hear him utter the words, “love you Mom”.  But that was OK, I knew he was no longer in pain.  He was no longer searching. He was no longer alone.  He was where he needed to be, not where we wanted him to be. 

Time marched on. In retrospect, it wasn’t really that long.  So much happened during that time that he wasn’t part of at all.   It seemed as though he was hovering nearby but unable to get to us, or us to him.

One of the friends went back again to see if anything else had been discovered.  The Detective went to the airport to collect the friend.  They had become friends during the search and rescue/recovery.  He was still an integral part of the case.  The Detective gave the friend all the information from the forensic team to read, so the friend would realize the extent of the ongoing investigation.   It was an extensive report.  They hadn’t just made it into a “cold case”. They were actively still looking and waiting for information to turn up.   The farmer was more than generous to the friend and the Detective stating he wanted the car to stay where it was, no need to impound and tow, let it stay, just in case he came back to get it.    These were people none of us knew.  People who lived in a state far from out home, Iowa. 
They were the salt of the Earth types.  We didn’t know them but they were instant friends.

Finally, in the night, the phone rang. It was the Detective.  A body had surfaced in the quarry.  There wasn’t an official identification but there was a probable one.   He had a tattoo on his left arm.  A tattoo of a Scottish Rampant Lion.  I remember being furious that he wanted a tattoo.   He came home, said, “Mom, I got a tattoo”.  I was angry as he was pulling up his sleeve and I saw it was the Scottish Lion….My birthplace’s standard of strength…He had outmaneuvered me again.

That tattoo identified him as my son, my baby, my boy.  A new chapter in our lives would now begin.

To be continued…

Friday, September 9, 2016

Time to write...

Well, I see it's been a very long time since I sat down and wrote anything at all on this site.   This past year has been a trial, to say the least, but I'm not going to write about that at all. Enough has been said to the folks that needed to hear it, I don't need to tell the world.

It seems to me that so many of my contemporaries are afraid to speak up and ask questions about things they should know about.  I don't understand all the secrecy.  OK, some of the stuff is hard to talk about, but most of the things are universal difficulties we all have at one time or another.   I try to understand where they are coming from and it's all about that "NUMBER"....their age.  They don't want to think about aging and what age brings to most of us, so, if they ignore it until it can no longer be ignored they're thrilled. You know, out of sight out of mind?

I don't believe it that. I get more information (and some odd looks at times) when I blurt out questions.  I don't really care what others think, I want some answers.  You can only look at WEB MD so many times and then you find out you're old and it's part of aging or some other such rot.  I want true answers, not Internet answers, which may, or may not be correct.  Who knows? Certainly not me.

Oh well, I'll keep blurting out questions in the hopes that someone will shut me up with answers...maybe someday.....oh bother....

Tuesday, June 2, 2015

Alzheimer's- the Demon within.....

Another change in my life.  Things don't stay the same, I know that, but I don't have to like it...and I don't.

Lunch with Emily has always been fun, but now there's a new twist and some new activities.  She's now in an assisted living facility....and very nice one, but not her home....She lets me know that almost every minute.

Today was my first experience with her in the assisted facility.  The staff were all very gracious and helpful.  The lunch was very...institutional...but nutritious and plenty.  If you wanted more you could ask for more.  I should be the one staying there...You get enough and you don't get a chance to be greedy or glutinous.....I'd lose weight.   Emily should gain weight because she sure hasn't been gaining weight, nor for that matter, keeping weight on at all lately.

It's sad when you have a loved one in any kind of facility.  Intellectually I know it's the right place for her right now and probably forever, but emotionally I have a feeling of grief... It's as though I've lost part of me. It's not that I'm thinking about my own mortality per se, but  something I always thought of as never changing has indeed changed and can never be put back to rights...

My cousin has been a part of my life since the day I was born.  She is 7 years my elder.  I am an only child and she is as close to a sister to me as I will ever have.  

She is the only person who shared my childhood bedroom.  She lived with me, my Mom and Dad from age 19 until she married and moved out at age 24.  You may not think that's a long time, but it was intensive and felt as though she always lived in our house. 

Time went on and we went our separate ways. Me to college, then my own marriage, Emily to build her home not far from me, but still not in the bed next to mine...We had children...We lived our lives different from one another, but we were still connected by the thread of family connection.  We saw each other sporadically over the years but managed to meet monthly for lunch and catch up on the goings on of each family. 

Our kids knew each other a bit, but they too had their own friends and families.  Still the thread connected all of us like an invisible lasso.  We could pull it together at times, weddings, funerals, graduations, but usually it was loosely held around us.  I thought it was like a safety belt, "just in case" we needed it.

As we've aged things have changed.  We remember the past as though it was yesterday, but Emily doesn't remember yesterday and that is frustrating to her.   Her sentence structure is sometimes non-existent...but that's OK...I can keep track...Her information is scattered all over her brain and it sometime takes hours to get it into the right order for more than just her understanding of what she's trying to say.  I can deal with that as well. 

I can handle things as they are as long as I know there is a safe place for her to be.  The place is safe.  She tries to escape out of every EXIT but the staff is on to her now, so she keeps them hopping..

Alzheimer's disease is a bitch.  There's no other word for it...It's a bitch.  In the case of my cousin, it's the family disease.  Luckily we're pretty sure it's her Mom's family and that will exclude me and mine from that particular strain, but who knows what the future holds for any of us?

My studies had me research the Dementia's and none of them were pretty to see or read about, but the beginnings of Alzheimer's, is a tougher deal...It's an insidious disease, it sort of creeps up on you when you're not looking.  If you have no other people in your family who have preceded you with this disease, you can lose time in getting a good diagnosis, and medication to help slow the progression....There is no cure, but some medications may help slow the spiral down that slippery slope where there's no turning back.

I know I must accept the cruelties of the disease, but I sure as Hell don't have to like that acceptance and I don't .

I'll keep visiting Emily, giving her my love and company and hope she continues to remember me as I remember her and the fun we've had over the last 68 years....