Friday, October 26, 2012

Just breathe

It's been longer than normal since posting an entry, I realize this :(  I have a lot of stories to tell and very little time right now.  But I will be getting them all down on paper and out of my head soon.  Like the story about when I had to run to Pronto at 7:40pm and pulled up and saw the Belle Plaine Ambulance in the lot.  Sheer panic attack.  Stupid.  Completely unnecessary, too.  But it is those triggers that set me off and remind me that we are dealing with a beast that cannot be beaten.  Then there are days when my mom texts me before I can text her to see how her day is going.  And the context of the texts are totally random and full of everyday life.  Like the exchanging of texts last night...all about Chicken and bisquits.  How we both made the very same supper for our family.  Sorta twilight-ish considering she was the one that handed down that recipe.  Those are the moments that remind me why I am here and I do what I do.

The elephant is still in the room.  The cancer is still there.  And for now, they upped her pain meds again because of the sudden attacks that she is getting of agonizing pain.  So that levels everything out for a week or two then it seems everything needs adjusting again.  So we will enjoy the time without pain for now.  And we will text about the normal and ignore the inevitable.  Because right now....that's how we roll.  More blog posting to come over the weekend.

Tuesday, October 16, 2012

It's just non stop for lack of a better term...

The last few days (every day since Thursday)  I have constantly been doing something in our house or TO our house.  Painting, cleaning, laundry, painting, then cleaning some more and painting some more.  When my stress peaks, I move.  I don't stop moving until it is absolutely necessary that I rest for the evening and get some sleep.  It's what I do.  It's how I cope.  I have no other outlets at this point to use, so I focus, I stay busy.  I continually keep my feet and my hands active so that my mind doesn't have ample time to catch up with what worries me.  The more stress that I feel, the faster I move.  The faster I move, all the quicker I forget.  If I 'forget' for a few hours, it makes life livable.  Tolerable.  Status Quo.  If I sit idle, seems as if that is cue for my brain to fire off random thoughts that should not be running through my head.  Scenarios I do not want to see happen.  Actions that will have to be taken.  You understand what I am getting at here?  Lately my relief from the everyday has been some home improvement.  I have been painting and painting.  Black and Hibiscus to be exact.  The girls' bedroom.  I have gone over the top in the time spent glamourizing their bedroom.  (If that is even a word?)  I want them to feel happy, to love their space, to love their life and not have to live out my stress and anger and resentment.  I don't want to put my burden onto my kids, so my way of dodging that bullet is stifling the pain.  That's how everyone copes, right?  Anyone with kids would have to agree with me that instilling your own fear into your children is NOT the right thing to do.  The burden of cancer is NOT a weight I want them to carry too heavily.  All three of my kids are 100% aware of what type of cancer my Mom has, what the long term outcome is, and the uncertainty of it all.  We have had the 'talk' as to what the end might be like, what they will witness and what they don't have to do.  I will not burden them with any sadness or frightful experience that they decide is not in their best interest.  I will respect their wishes and not make them cross their own boundaries that have unknowingly set.  I will not make the last moments of life something that they will never be able to get out of their head if it's too scary.  I can't make them live with that if they so choose to not be there physically at the end.  So by me sprucing up the joint, I think they are sidetracked...and honestly, so am I.  I love the fact that I am focused on something other than cancer all the time.  I need that distraction to keep me on pace for life.  For my own personal benefit.  I sometimes wonder if my body is going to 'crash'.  I would describe my form of crashing as my body physically just giving up for a few days.  Going into idle mode, letting my mind control my body and getting some real sleep for a change.  There's got to be a bottom for this kind of constant activity one would think.  I have NOT hit that bottom yet.  I have slept through the night ONCE in the last 6 months, and I remember that morning vividly.  I felt alive and refreshed and awake and normal.  Every night is different for me, but most nights I am up around 2am, back to sleep at 3am, up at 5am for good.  Sleep eludes me even though I go at mach speed after work.  (and most days during work, too.)  Just waiting to hit that rock bottom...waiting to crash...but for now this train will keep on chuggin down the tracks and make myself distracted from the truth of cancer for a bit longer.  Yes it is like lying to myself.  I choose to lie on occasion so that I am not a puddle of goo and bawling uncontrollably for days.  Is that so bad?  I think not.  I think if you asked my mother how she would want me to be living my life right now, she would say...LIVE IT LOUD.  Live it now.  Breathe that fresh air in and don't you ever forget what God has given you.  E.v.e.r.  The End.

Sunday, October 14, 2012

The winds of change are blowing wild and free...

What an eventful last few days.  Not anything I wish to repeat anytime soon, either.  I am sure my Mother would agree as well.  Started Thursday and was relentless until Saturday...pain, nausea, fatigue, more pain, and a LOT more pain.  It was three of the most scary times ever in this entire journey through pancreatic cancer.  It was a pain she could not get control of.  Everytime she tried to stifle the pain with more medication, all the more frustrated and upset she became because the meds were NOT working.  The pain was still there.  Stabbing in her abdomen, drilling pain in her back, radiating on both sides.  It broke her will, and that's not what usually happens.  That is not in her plans.  She's a fighter and a damn good one at that, and this bout with the pain....the pain won.  I hate to even say that, but she had to take an unbelievable amount of medication to get it under control.  Unfathomable.  I would be on the floor slobbering out of both sides of my mouth talking of riding a kangaroo across the nearby town of Amana.  SO frustrating.  For her it was agony.  They finally did get the pain under control but it took bringing out the big guns to get it done.  The one word I was not looking forward to hearing.  Morphine.  

In clinical medicine, morphine is regarded as the gold standard, or benchmark, of opioid analgesics used to relieve severe or agonizing pain and suffering.

Yeah...that's what I know about morphine.  That and the fact that they use it for post operative pain.  Post op.  After you have been cut open.  Not a ball of fun.  So obviously the pain she is having and the medication she is taking is not doing its' job.  Upping the dosages and adding in the morphine had been one of my biggest fears in this journey.  I can't put my finger on exactly why it bothers me so much, but I gather it's the idea that morphine can do wacky things to your thought process, It can make you say and do things you would not normally do or say.  And it's a VERY powerful drug.  That makes it even more ominous.  Because the need for morphine is there, the pain is obviously becoming intolerable.  The cancer is growing and invading.  I am scared.  Scared for what's down the road, scared for what tomorrow brings her.  Fearful that she will wake up every day just like she woke up Friday, straight awake as soon as the meds wore off, grimacing, crying, writhing in pain.  It DOESN'T have to be like this and I think she is aware of this now.  She has always wanted to cope with the pain on her terms, not anyone elses.  She regulates the amount of meds she ingests.  Never too much.  Afraid that if she is taking too much, we will all think (and we already know) that she can't handle it.  It would be like her saying "I give up".  That's her mentality and trust me, there is nothing in the world that I can do to change that.  This mother of mine is a scrapper and cancer is getting a run for it's money right now.  Promising you this...after all the pain she endured this weekend, she has realized how crucially important it is to stay one step ahead of the game.  One step ahead of the pain.  Don't ever let that pain swell up enough to be felt.  Stifle it down as much as you possibly can with the medications you have been given.  No one on this earth should EVER have to suffer like she has.  It's inhumane, it's cruel, there is NO reason right now that I can think of as to why it is happening to my mother,  but alas it is what it is.  I will continue to make those late night trips to her house when she is having issues, helping her cope, giving her my shoulder to lay her head on and I will hug her and tell her the pain will leave soon.  

Wednesday, October 10, 2012

Anxiety and her issues of the day...

One would think that my Mom's main concerns during the day would be taking her pain meds on time as to avoid breakthrough pain, remember what to eat and what NOT to eat, napping, and hanging with her hubby.  Well, I am here to tell you she is NOT your typical pancreatic cancer patient.  Her anxiety for the day today...her new smart phone.  o.m.g.  How does this woman do it?  Of all the hell and turmoil and ruckus that is going on inside her body and inside her head, she is worried about how to use her new phone.  She is not a big fan of it.  Ha!  Who woulda thunk that my 60 year old mother would have a smart phone before me?!?  She talked on and on about what she didn't know how to do, how she could barely figure out how to receive a call.  She wants to take it back.  She wants her 'baby phone' back.  Honestly I about laughed my a$$ off when I heard her say that....'baby phone'.  She likes normal.  She is a fan of 'easy to use technology'.  And she is NOT into the smart phones.  The outcome of them having smart phones is still up in the air as they have 30 days to decide, but I am leaning towards her ditching it and going back to the old phone..

Why am I blogging about my mother and her smart phone?  Her issues with change?  With upgrading?  Pretty simple.  For the first time in awhile during our conversations, cancer didn't come up.  It did not plague our conversation.  It didn't loom over my head taunting me with its' hideousness.  It was stifled.  It was quiet. Even if it were for a very  brief 20 minute span.  We 'ignored' it.  It was one of the most glorious 20 minutes in recent history!  Listening to her rant and rave about a phone that is proving to be more intelligent than its' user was very entertaining.  It was an amazing conversation.  So lighthearted and carefree.  I want more of those conversations and I need to find a way to incorporate it into our lives.  I have come up with some ideas.  A LOT of ideas.  I want our time with her to be meaningful while she feels well.  I am considering having the kids write a 'book' for their Maga.  One that they complete all by themselves with little guidance from me.  I want the book to be filled with their memories with their Maga.  Let THEM tell the story how they see it through their little human eyes.  Make pages of questions that they want answers to, and we will 'interview' her for the answers.  I can envision how I want this all to go down.  After the book is completed, we will pick a date.  Make some junk food snacks, veg out on her living room floor with the entire family and have an interview night.  Record it.  Love it.  Learn from it.  Maybe we could do just a few pages per week, or maybe all of the book at once.  It's a starting point...  That's what we all need.  A jumping off point.  Something that we can all do together that does not require money or travelling or walking.  Being together making memories, reminiscing of the 'good ole days' and letting her be the center of our attention instead of cancer getting a front row seat.  I say that we give cancer a card to go to the back of the line for awhile.  It's far overdue.

Tuesday, October 9, 2012

There are things in my life that even I wont make public

I can't even begin to explain to anyone not affected by a loved one suffering from cancer what it actually does to you, your friends, your family, and your peace of mind.  There are things that happen with the ones afflicted with cancer that you KNOW would not otherwise happen if they didn't have the disease.  Things that may be said or not said, things they do, choices they make.  It affects nearly every aspect of their lives and the caregiver's as well.  And this part of the disease...what it makes a person do and not do, it Hurts...with a capitol H.  Hurts the heart and the head and the mind and the soul.  I am not even sure how to explain it so that others know what we all go through and feel, but imagine yourself living a completely normal life, going to work everyday to the same job that you have had for over 30 years, looking forward to retirement, loving watching your grandkids grow into bright young little adults.  Then all of a sudden the rug under your feet is literally yanked and you fall on your a$$.  No spotter to catch you, no cushion to fall on.  No preset plan that will happen.  Never knowing when you will be sick.  Never knowing when you will be well.  Not knowing if you will see your grandkids mature and age.  Everything that you have ever known to be normal is now GONE.  That in itself would make anyone's mind say and do things that are not in the norm.  That they would not normally do.  Some of the things that they say or do may hurt the ones they love, or make the hearts of the ones they love hurt.  Its a hurt and a pain that I have never experienced until now.  The 'going ons' of the last few days has made one statement replay over and over and over in my head.  My inner self saying....WOW what disease does this to people?  How can this even happen?  WHY does this even happen?"  And occasionally it will float towards...."Why Me?  Why does my life suck?  Why do problems pile up in threes or fours or whatever God deals me?  Why?"  Why?  Can't answer that, have no explanation, haven't forgiven anyone for what is going on.  But I do know this...It is what it is and that's that.  It's a horribly over used cliche but it works for me.  It is what it is and I cannot change cancer.  Her cancer is INCURABLE.  It will never go away and it will continue to reak havoc on her frail frame.  I will continue to get the phone calls from her crying on the other end because of the nausea and vomiting, pain and fatigue, roller coaster emotions and brief meltdowns.  She will continue to refuse to let me come to her aid every single evening and just keep her company.  She does not want that right now.  She knows there will come a day when she will have to rely on me to help her in the evenings.  But I need to let her come to terms with that on her own.  All by herself.  So for now, while the cancer makes hideous things happen, lets my emotions get the best of me, and continues to try and beat her down, let this be known.  NO MATTER WHAT she says or does or does not do, I LOVE HER.  She is a fighter.  Plain and simple, no big words here coming from my mouth because, well....none are needed.  She is my inspiration for keeping the smile on my face and the bounce in my step.  If she can walk through her day to day life with some giggles, grins, and heartwarming texts (which is my FAVORITE part of my day)  I can certainly practice forgiveness for what cancer does to her <3

I will just apologize right now if it seemed as if I rambled uncontrollably.  BUT this blog is made literally for that reason.  To get those ramblings out of my head so that I don't take them to bed with me.  I don't dwell as hard on them if I get the thoughts out to someone that will read and possibly be going through the same things as me.  Maybe in the grand scheme of things, I will shine a light somewhere for someone and help them gain back the bounce in their step?

Tuesday, October 2, 2012

Little Girls grow up dreaming of their weddings....

What will their dress look like?  How handsome will their groom be?  What will be the color scheme for the wedding?  Will there be an intimate guest list or hundreds on hand?  These are all the same questions that go through every girls' mind when they think of their wedding day.  Then you grow up, get married, and grow old together.  One day you will reflect on your lives together and maybe decide that it's time you should renew your vows.  Seems to me that renewing vows has become more common as of lately and there are MANY reasons why couples decide to do so.  BUT....

What if the decision to renew your vows with your loved one was based on sickness?  On Cancer?  On how much time you had left on this earth?  Most couples renew their vows for other reasons...reaffirming their love for one another, making up for the wedding they did not have when they got hitched the first time at the Justice of the Peace, or just an excuse to have another wedding and a big hulaballoo with family and friends. Whatever your reason you think you could hold your head high with dignity and grace knowing you were renewing your vows and planning the date for said renewal based on your health?  Based on how you were feeling the two weeks prior to the ceremony?  Based on the fact that Hospice is granting your version of a 'Make a Wish'?  My Mom did all of that.  A simple ceremony at Franklin Park with a host of family and a few close friends.  An amazing amount of love and tears and support and prayers.  I could literally FEEL them being lifted up in prayer that splendid afternoon.  The love that poured out of their hearts, the tears that trickled down almost everyone's cheeks.  Renewing of vows is supposed to be the happiest of times.  A day filled with celebration and cheer.  This renewal was plagued with fear.  And with strength.  With graciousness and with courage.  Knowing that this day could very well be the last day that she will physically hug some of her close friends and family that have travelled to be with her on this day.  I can't even really put into words just what the feelings were for me.  I will try...My chest felt heavy the moment I arrived at the park.  Heavy with sadness and burden that cancer has put onto my Mother.  A burden that I wish I could carry somedays instead of her.  My head was a bit foggy and I was very unsure of how the whole day was going to go down.  I get to see my Mom several times a week, so I let her mingle and meander with friends, chuckling and giggling and crying and hugging.  Times where I just gazed at her, in complete awe of her courage and ability to fight as long as she has.  She is still fighting each and every second she is on this earth.  And here she is sitting in the park amongst the best of the best of her friends and her family.  With nothing but a SMILE on her face, and a twinkle of tears in her eyes.  THAT is the dignity and grace I described in an earlier post.  She has achieved that grace.  197%...there is no doubt.  To walk through all of her loved ones, look them in the eye and tell them she will be fine.  That she feels fine.  That her world is fine.  She is anything but fine.  But what she is...Full of Grace, Dignified, Strong, Peaceful, Loved.  Oh dear, is she ever loved.  <3

So to say that the Renewal of Vows was all roses and candies and frosting and puppies would be a lie.  I breathed a sigh of relief when it was over, because as 5pm approached, I did see my mom grasping at her abdomen, and I knew in an INSTANT that it was time for pain meds.  By the time I caught up with her and told her it was 5:20, she was a bit uncomfortable.  Thank goodness the crowd was winding down and the day was coming to an end.  I will say this...I wish for all of you reading that cancer does not invade your family the way it has ours.  But I do wish that you could learn from what cancer has taught me.  It has invaded my soul, but has made my mother terminal.  Does that make sense even?  Cancer doesn't just affect the patient.  It's so much more than that.  My mother fights the hardest  battle of them all, but it affects all of us.  Makes us have to go through such agonizing events such as renewing vows based on health, based on being diagnosed terminal, based on cancer.  See what I mean?  I will leave you with this photo, which I think speaks volumes for what the day was like.  My Mother, her husband, and my kids...the only two missing  from the photo is Jason and me.  Otherwise this photo is my world and I will forever hold this close to my heart, my mind, my soul.