Fifth straight day...

Every day since Sunday Hospice had been making visits to see my mom.  Obviously there is a reason for that.  Just last week the visits were twice a week.  Oh how far we have come.  I have been there with her every single day, helping her get up and down, learning the needed skills from Hospice to make my Mom's life more comfortable.  We are learning to pick her up using a belt around her waist, learning to crush medications, forced to become comfortable with injectable meds when the time comes that she is no longer able to swallow.  I am becoming accustomed to what time she takes her meds, what meds are critical at certain times, and what meds to add in for break through pain.  I have recently become familiar with what a 'pressure wound' is.  If you would have asked me four days ago, I would have no idea.  I know now.  Mom has a large pressure wound on her right heel.  It has about doubled in size in two days.  For those of you not familiar, a pressure wound is an injury cause by unrelieved pressure that damages the underlying tissues and skin.  Similar to a bed sore.  She has a very large bed sore, too.  On her left hip.  The difference between her pressure wound and bed sore is the sore is more of a large 'ouchie', a really bad skinned knee, road rash, something comparable to that.  The pressure wound on her hell is just a very large blister, no scabbing, just full of fluid.  She honestly didn't know she had EITHER of them, which tells me she certainly isn't feeling too much because these 'ouchies' hurt me just to look at them.  I guess that means the pain meds are doing their job?  Or is it that she is just so unaware of the little things in life that we make a big deal out of?  like blisters and skinned up knees?  Does she see beyond the small stuff and choose not to complain?  Trust me, this woman does NOT complain.  And she's dying.  Not a word.  Only time she ever mentions pain or swelling or stiffness or soreness is if I ask her.  Otherwise, nothing.  Not a word.  She spends her energy asking about the kids and my family.  That's just the way she is built.

Her thought process is seriously compromised right now.  You can talk to her and she will answer in one to two sentences at a time.  Not a lot.  There are some nonsense ramblings out of the blue that she says...like she is talking out loud all these things that are going through her head.  Some of her thoughts are precious.  When she looks at her husband and out of the blue says "Yes Michael you really do have pretty eyes".  Or when he is helping her out of her chair, she looks at him very disconcerting and says "Michael, you're losing weight."  Seriously?  Really?  She's concerned with her hubby losing weight?  Like I said, that's how she's built.  I am cherishing her 'out loud' thinking right now.  She's saying whatever she wants, no filter, no discretion, no warnings.  Brutal honesty.

We all are very aware that she may only have a few more good days of being alert and awake.  Already just in the last couple of days, her sleeping is increasing ten fold.  There will come a time where she will be difficult to get her to communicate with us, let alone get out of bed.  Therefore a hospital bed is being delivered Friday to put in the living room so she doesn't have to be stuck in the bedroom all day.  That marks another turning point for her.  She didn't ever want to get a hospital bed, but she did discuss with me not dying in her own bed.  For her own reasons.

Our Hospice nurse Amber, is a saint in my eyes right now.  I have told her at least three or four times in the last five days that she ALWAYS knows the right things to say to me and to mom and to Michael.  And she does.  She's obviously amazing at what she does and she was born to do what she does.  I would not want any other nurse taking care of my mother.  Amber puts things into perspective and always gives me different and appropriate ways to look at things.  She sheds a light on a subject in a way I would never consider.  It's heart touching to say the least that a nurse can have such a positive influence on my daily thinking.  And my Mother ADORES Amber.  She trusts her.  She loves her.  Just like she loves me.  Their relationship is one that we wish we never had to have and if we never met Amber, it would be because my Mom didn't have cancer and I would be ok with that.  She's in our life for a reason.  She's perfect.

I apologize for the rambling but once I get going, there are times I can't shut off my brain.  As for me, I think I am doing ok.  I don't sleep much, but I have plenty of time for that later.  Today my morning started off at 3:30am bright and early after going to bed around 1am.  One of these days I will crash.  Hard.  But for now we will keep plugging away and being thankful for each breath that she takes, thankful that I have my daughter's softball practices (helping coach) to let me escape for a few hours a week.  Need that.  Oh do I ever need that.  Last night practice was freezing cold, windy, and just downright miserable, but watching my lil redhead do THE best slides into second base was just what the doctor ordered.  I was so proud.  I was beaming.  I was SMILING.  I was happy.

A wise friend once told me...

That title is somewhat the truth...I asked a friend tonight about what I was feeling and if it was 'normal' to have these feelings.  I have never lost a loved one to cancer.  I have lost family members, but only a couple.  I was very young when my Grandpa passed.  He passed on in his sleep.  There was no preparation for his entrance into Heaven.  One day he was there, and took a nap, and the next, just gone.  No suffering, no regimens of pain meds and anti nausea meds and anti anxiety meds and Hospice visits.  Just a peaceful passing.  As we walk down this road God has already paved for my Mother, I am plagued with ill feelings.  With angry feelings, selfish and not so happy feelings.  Feelings of guilt, regret, joy, and sadness.  All of these feelings I can sum up in a sentence, and that sentence is what I asked a friend about.  That sentence is............................  I desperately want my Mother with me, but not like this..........................................

Mom is declining at her own pace every few hours.  More confusion, lots of nodding off while sitting and standing, dead a$$ tired, up for only about four or five hours today.  If you are doing the math, that means she is sleeping for 19-20 hours a day right now.  NOT where we want to be, but sleep is best for her.  While she is awake, she's so tired.  You can see it in her eyes, I can feel it in her smiles.  She's exhausted but that brain of hers just will NOT give in.  So I will propose above mentioned question to you all.  Am I wrong for feeling this way?  That the selfish side of me wants my Momma here with ME for a very very long time, but not like this?  I hurt to know that we will probably never get to have those amazing hour phone calls any longer.  No more texting all day long checking in on her. Gone are the days of taking her to the kids sporting events and watching her smile from ear to ear boasting about her grandkids.  I just don't want the suffering.  We have had all the time in the world to prepare for this.  Three years to be exact.  Now that we are nearing the end, it sucks.  It hurts.  It's like a vise squeezing my heart kind of hurt.  Yes my heart REALLY does hurt.

There's a plus side to all this heartache and pain.  I have a greater knowledge of who my TRUE friends and family are.  I am 150% certain about who I can trust, who I know will always pick up their phone if I call them at any time of day or night, and I know who I can rely on to help me out in time of need.  All of this has become crystal clear to me in the last couple of years.  For that I am Blessed, I am Thankful, I am Lucky.  

As the hours and days go by, I will continue to update as much as I can.  I will include what details I feel are appropriate and leave out the ones that make me feel vulnerable.  Some people have mentioned to me that my writing has helped them realize things in their trials of life, and that's why I will be committed to updating the blog.  Besides, it's therapeutic.  I am not a people person and the best of my friends know this.  This blog helps me relay my Mother's journey one step at a time without having to repeat it to several people several times a day so that they can watch me cry a river of tears.  Thank.Goodness.for.that.  Ugly cries are to be had in private.  

Life can show no mercy..

"Things have seemed to change...There's one thing that still the same....in my heart you have remained..."

Michael Buble can sing things I could not put on paper myself even though the thoughts are there.  Babe You're Not Lost is on repeat in my car and on my kindle and in the laundry room while I am folding clothes. Life for Mom has taken such a drastic downturn in two weeks.  Major.  Heartbreaking, overwhelming changes.  She is a shell of herself.  I can see her spirit and her soul in her eyes and feel it through her hugs.  Her body has all but given up.  Her body is lost.  It's a horrible comparison, but it's my comparison.  The only way I can express to you in writing what is going on is this.... two weeks ago, she was texting rapidly, sometimes responding almost quicker than my teenage son.  She was cooking suppers and doing some laundry and sweeping the kitchen floors.  Walking unassisted, staying by herself at home for long periods of time.  Standing upright.  Lifting her own legs on her own will.  Sleeping until only 9am or so.  Two weeks later, none of that is the same.  Each and every thing you and I take for granted everyday (which you SHOULDN'T) comes as a struggle for her.  She walks with a cane. She doesn't wake up until around 11:30 or 12 noon.  It takes her a couple hours to wake up and become mobile enough to walk around the house.   She needs help lifting her legs into bed.  Cooking for her is few and far between, but she did manage to make her husband his weekly dose of taco meat, which is tradition for those two.  Sundays she makes taco meat, just for her hubby.  And that makes her very happy. Her legs and abdominal area are still swollen.  the fluid in her lungs can be heard thru stethescope, but only in the lower area.  Her right hand is very swollen, but her left hand is not?  Don't ask, because I know not why?  And the newest development, which has me worried, is the swelling in her face.  Mainly on the left side.  The vision in her left eye is half way obstructed by the swelling in her upper eyelid.  Her cheek and her lip are puffy, Hell, even her ear.  Hospice is saying it is most likely her kidneys are being affected.  That was the term they used...."affected".  Which in reality I know what that means.  Her kidneys are shutting down.  I am no doctor, but I have googled enough information to know.  Kidney failure is devastating.  We all know what's coming, but my Mother has a way of making her life worth living regardless of her health.  Obviously I am devastated.  Unfortunately, it's her norm.  The swelling will continue to pool in different areas, it will never get better.  I have comfort and peace knowing that Hospice is helping her long her journey keeping her free of discomfort.

Everyone is constantly asking me...."Is she in pain?"  The answer to that....the pain never leaves BUT that is not her number one complaint.  Her pain is being managed and that is a blessing!!!  Most pancreatic cancer patients have issues with eating, digestion, pain, nausea, etc.  She seems for now to have dodged that bullet.  Amen Amen Amen.

Hospice is coming again today after an unplanned visit yesterday to check out the swelling in her face after 24 hours.  Looks like we are going down the path of having Hospice visit more than twice a week.  I would prefer at this point that they do, but try and tell her that...she's still so darn stubborn :)  Its her way or no way.  I love that about her.

So for now, we are praying and loving and hugging and living.  She certainly hasn't given up yet, but she's scared.  She's not scared of passing away, but of what she will miss and how she will get to the 'end of life'.  If curse words offend you, I apologize in advance, but my Mom is a BADASS cancer fighter.  She has more than done her part in challenging all that cancer has handed to her.  I am eternally grateful for each and every phone call, text, and visit we have had and all that are to come.  

Four Months Later

...I haven't made a blog entry in FOUR months, folks....four months.  That, my friend, is a pretty hefty amount of time when you have been stricken with terminal cancer.  I couldn't be more proud of being a daughter of a cancer fighter than I am right at this very moment.  She has literally defied ALL of the odds, all of the obstacles, met her milestones, and continued on her life journey.  She's a fighter.  Plain.and. Simple.  She's my Momma.  And unfortunately she is very very ill.

I started this blog specifically to help me clear my head of thoughts before I go to bed at night.  I find it quite theraputic most days.  I am not Shakespeare, but I try and maybe someone else out there is going through the exact same thing as me, and they will feel comforted knowing they are not alone.

The not so fun stuff....my Mom's health.  She is hanging in there, each day brings new challenges.  Some days are so much better than others.  Some days just plain suck.  Her legs all the way from her ankles to her abdomen are full of fluid, and this makes daily life painful.  Very, very painful.  Her legs are red and swollen and blistered and cracking.  Her skin on her legs looks as if it is about to burst.  Most days it takes her a good hour or so to get up and moving around.  She has been sleeping in later and later every day.  Most days she was up by 9am.  This last week she has slept in a lot longer.  Today was almost noon before she got up. She needs her rest and we will let her sleep and we will not disturb her.  But to brutally honest, I have googled enough information to know that an increase in sleeping has its' own ominous definition.  So does the swelling.  I will let you all figure that out on your own.

I talked about morphine on my last post in December.  She has hit that crossroad where the pain is just too unbearable.  Administering morphine into her daily regimen of pills has helped.  I know that for the longest time, the word morphine scared us all.  When I think of morphine, I think comatose, out like a light for days, don't wanna wake up after surgery kind of morphine.  It's not like that.  Go figure....  Thank goodness it's not like that.  She is a bit groggier than when she is not taking it, but it takes the edge off of the pain in her legs.  If it makes her comfortable, then so be it.  The word morphine no longer frightens me because this is what needs to be done for HER.  Her hubby has been taking off work to be with her 24/7, and that is a blessing in itself.  Anything she needs, he gets it.  If she needs help, he's right there.  He loves her with every ounce of his being and he wears his heart on his sleeve for her.  Talk about being blessed with one of the best caregivers in time of need.

There are a couple things more personally that I am noticing that are progressions of the disease, but I will save my questions and my assuming to myself until I have spoken with Hospice this week.  I do myself NO GOOD getting worked up over something trivial to them, but seems urgent to me.

Her time left here on this Earth is short lived, I am sure.   I struggle with that thought daily.  I am a planner.  I like to know when things are going to happen and why and how and with who.  This situation is out of my hands and I am finding it very difficult to let Him deal with it.  Let God make the decision when he sees fit to. My only concern is that we stay AHEAD of her pain, I have no interest in seeing her suffer any more.

Changing rapidly now...

It hurts.  It hurts my head and my heart and my eyes and my ears.  To hear the updates, to know that things are not well.  It's not enjoyable.  When my phone rings and "hospice" comes up on the caller i.d., I instinctively hold my breathe, pray for the best, and prepare for the worst.  Amber doesn't call me when there is no reason to call.  She always makes sure I am up to date on any changes, gives me her opinion on whether or not she thinks things are worth worrying about.  Today the changes are worth worrying about.

My mom is retaining a LOT of fluid in her abdomen.  They had been doing measurements to gauge any changes in her abdominal size, and for three weeks, no change.  Today they didn't even have to get the tape measure out.  The signs of swelling were visible with the eye.  Hospice knew the swelling was there without even having to touch her abdomen...I am trying for the life of me to remember how hospice tried to describe it to me, but I think after I heard 'dramatic increase in abdomen size', my mind shut down for a bit.  Just for a few seconds.  I quickly returned to the 'game' and listened intently and with purpose.  We all know what's coming.  For goodness sakes, we have known for close to three years.  Three glorious, terrifying, cherishable, painful years knowing that pancreatic cancer will ultimately be her demise.  BUT I now know I have been in sort of a denial phase.  She really has surpassed the traditional statistics.  By all measures she is a FIGHTER by nature.  Nothing that she has gone through has knocked her down and out.  NOTHING.  I long for her to pass on that trait to me.  This stage that she is in is NOT a good place to be.  I'm not sure if any blog readers out there know what Ascites really means.  I have read such terms as imminent death, transitioning to end stages, morbidity rates.  It's devastating and probably the worst news we could have gotten.

There are some treatment options for the fluid buildup, but unfortunately these 'fixes' are temporary.  She could go into the hospital and have the fluid drained with a gigantic needle, only to have the fluid return in approximately one weeks' time.  She also runs the risk of infection at the puncture site, possible 'poking' of something internally while draining the fluid, and also coming into contact with any 'sick germs' that would be floating about the hospital.  At this point, a cold could be devastating and Influenza would be almost deadly to her.  There are so many risks.  She is unsure of what she wants to do.  Unsure of the procedure and if the risks outweigh the benefits or vise versa.  She's not ready to say 'yes' to the procedure, but not saying no either.  We discussed it tonight via telephone, and she discussed it with her husband as well.  Doing anything for her health has got to be on HER terms and no one elses.  My opinion does not matter.  I will support her in whatever decision she makes.  She is leaning towards no.  All along she has said no more hospital intervention, no doctors appointments, nothing.  That's her call and I stand by her 100%.  But I know the fluid will soon cause her major discomfort in the simple things...breathing, laying down, sneezing.  It will become unbearable.  Under that stress she may make different decisions.  Once again....her call.

So for now she is still showing that fighting spirit.  She puts up a good front, giggles to me on the phone about the impending snow storm, and makes sure I am recovered from the flu.  I am Blessed.  Blessed to be her daughter, to have travelled on this journey of life with her.  Instilling in me her values and her strength.  There's no way I would be where I am at without her.  I am no millionaire working the perfect job with the perfect house in the perfect neighborhood with perfect kids.  What I am is honest, nurturing, forgiving, and motherly.  All learned from the greatest woman on earth....my mom.

So there's where we are at today.  Preparing for her hubby to take his leave from work sooner than later.  Trying to stay faithful in a world felt hopeless.  Somehow, someway, this will all make sense as to why its' happening.  Just not now.  I long for Christmas Eve...the one day that has ALWAYS been reserved for our Christmas at Maga Moon's.  This Christmas will be special.  This Christmas will be ours.  I will not worry about how well I wrapped the gifts, or what dress the girls are wearing.  Everything has changed this year.  The petty and invaluable are so apparent and clear to me.  More clear than ever.  I have cancer to thank for that.  Asking of course for all of you to lift my mother up in prayer and bless her with the ability to be as comfortable and pain free as possible.  This is ultimately the start of an incredibly bumpy road.  Wearing my seatbelt and helmet.....

All signs say we are approaching the end stages...

I am not ready to believe the signs.  I am certain she is not going to pass away tomorrow.  But the uncertainty is killing me.  It's ripping my insides apart and playing games with my mind.  One day I think it's alright to e happy, and she's doing fantastic.  The next day, she's vomiting and nauseated.  Pain sneaks up on her when she least expects it and it comes on strong and sudden.  Enough to throw even the strongest into a full blown panic.  The newest symptom is Ascites.  This means there is an excessive amount of fluid building up in her abdomen causing swelling.  It also will cause swelling in the ankles and legs.  Ascites is particularly common in the end stages of Pancreatic Cancer. NOT.what.I.wanted.to.read.  Screw Google search.  I know better than that.  I have been down that road reading far too much on the internet and learning things I wish I had never learned.  I guess we need to know the truth.  I know the outcome.  I know she will never be cured.  But again, the uncertainty of when and if she will suffer and how long she will live, it's almost too much to bear.  She has been so blessed with 2 plus years of surviving already.  When is her luck going to run out?

I find the thoughts that are monopolizing my everyday thoughts, are quite selfish in my opinion.  There are days where I am disgusted by some of the things that fly through my tortured brain.  I am not even courageous enough to put them on paper.  Some of these thoughts I would never ever expect to cross my mind.  I don't get it.  I am NOT a selfish person.  I live and breathe for family.  I will immediately drop everything to be there for a friend, but in this time of  trial, I find that the ugly side of me is making its' presence known.  :(  My question is this...HOW do I get back to being thankful?  For being grateful to God for letting us spend this extra time with my Mother?  Why do I feel this way?  Will this torture every go away?  I have so many questions and so little answers.  Frustration.  That would be the key word here.  Disgusted.  Dismayed.  Hurt.

In a grand summary, we are thinking the beast within is starting to close in on my Mom.  It has been sneaking up more and more lately, tightening the grip on her life.  Stifling her energy, trying to crush her spirit.  That's not happening.  No way.  She still smiles all the time and loves her grandkids more every second.  She still cooks her hubby supper and decorates for Christmas.  She loves her obnoxiously loud puppy and hugs me when I need it most.  Cancer may have a grip on my Mom, but it will never take away her spirit.

It's the wreck of the day...

Ok, so I stole the title for my blog from an Anna Nalick song.  I have turned to music to soothe my shattered soul.  It works.  For real.  I literally get lost in lyrics and youtube takes me on twists and turns through all different genres until I find a song that makes me say WoW.  Wreck of the Day is one of those songs.  Also Shine, and don't forget Just Breathe.  Anna is breathtakingly beautiful with a voice that touches my heart.  She is my new favorite, that's for sure.  One of the lyrics that plays over and over in my head is "Driving away from the wreck of the day and I'm thinkin bout calling on Jesus."  That right there is why I said WoW when I first heard the song.  There are more days than not that I feel like my life and my job and the way cancer affects our lives, that we are driving away from the wreck of our day.  Once I lay down to sleep at night, that's how I drive away.  My only escape from my wreck of a day.  Sleep.  Because then I can pray.  I can speak to Him and tell Him what is weighing heavy in my heart and hard on my mind.  He listens.  He carries the burden for me and He gives me my hope and my faith back.  Even though it seems every single curve and bump in my life is major and life altering and shattering and unbelievable, I can always pray.  He will always be there.  No, I don't attend church every Sunday and I am 100% ok with that.  Your church is where you pray.  Doesn't matter your location.  Doesn't matter your state of mind or how you are dressed or if you decided to not comb your hair that entire day.  My faith in Him does have its' times where it waivers.  When I ponder too much on the past, confused about the present, and vividly petrified of the future.  So my location of choice does not have to be church on a Sunday morning to know that He will always be present and living within me.  Holding my head, laying beside me when I feel like I can not face another day smiling.  It's a powerful feeling to know that my faith is still there.  I will admit I did lose faith.  As a matter of fact I can tell you exactly when that was...April 2012.  the month where the doctors told my mother that it was time to go home and stop the treatments, get her affairs in order, and start living.  My faith was pulled out of my body, thrown against the brick wall and shattered into 3,000 pieces.  I never thought I would fully piece it back together.  Would I ever have faith in a God that has beat down the most unbeatable woman I know?  I was skeptical for a long time.  Eventually the faith came back, and my praying became more intense.  More frequently, and most importantly, naturally.  I knew that I had regained the faith back when I could walk into my mother's house late one evening as she was suffering a major attack of excruciating pain and sit on the couch with her.  Hold her head on my chest, and tell her things would be just fine.  That her pain would subside, we would control it, and that she was going to get through this.  Faith is back.  And I like that feeling.

Not going to blow smoke here, though.  This weekend tried to waiver my faith and knock it down.  Didn't work.  As an EVERYDAY ritual, I text my mother in the morning making sure she is not suffering, not vomiting, not nauseated, not in pain.  And almost every morning, I receive a text with good news.  Says she is doing just fine, no pain, and that she slept like a rock.  Saturday was not the case.  I did as I normally do, and waited for the response.  I get a message back...."Not good".  I swallowed hard and forced myself to read the rest before I started freaking out.  She explained she was vomiting but was doing the right things to get it under control.  As you know, vomiting for her is NOT on her list of fun things to do.  Two abdominal surgeries, which include one where they completely 'replumbed' her insides, and another to fix a football sized hernia would make any sort of wretching, coughing, laughing, or sneezing extremely painful.  Imagine what vomiting would do.  She despises it with all her being.  She hates it.  It makes her very very very angry. Very angry.  Pi$$es her off to be blunt.  Pi$$es me off, too.  It's the nature of the beast, though.  She has learned to deal with it and combat it quite well now fortunately.  She got the anit nausea meds on board and waiting for them to take effect before any other action was done.  It worked.  But not without that twinge of fear and loathing that each episode brings.  It brings us one step closer.  One step in the wrong direction.  Not at all what we want to happen.  They evened out her pain and nausea about two weeks ago by upping all her medications and that always puts her in a 'better place' for about two weeks.  Her body then becomes immune to the higher dosage.  The breakthrough pain storms in like it owns the place and we all feel like we are back at stage one, fighting to keep her comfortable.  It is what it is, and this is her life.  The day will come when the pain will not go away.  The meds will be strong enough to render her speechless and all the suffering will be over.  I am not ready for that to happen, nor is she for obvious reasons.  She has so much to live for.  Her husband.  Her grandkids.  And me.  We love her to the moon and back.  It's not her time yet.

So this is her life for now.  On again off again.  Hurry up and wait and see when the pain and the nausea will return and for how long it will stay.  It's a life no one should have to lead and I pray that none of my friends or family will ever have to go through the same thing that her and I are dealing with.  It's not fair to anyone that cancer gets full control.  Whoever decided that cancer would be uncurable needs a high five...in the face...with a chair.

Life's like an hourglass glued to the table...

No one can find the rewind button boys...

So cradle your head in your hands, 

and BREATHE....JUST BREATHE