Seems like we've been here before.....

I am much too familiar with this hospital.....

We are back at Harris Methodist Ft. Worth.

Dad had another fall last night/early morning.  Due to the number of falls and his current condition the Home Health nurse instructed mom to call 911 the next time he fell.  Well that time came this morning. I got the call from mom just before leaving for work.  Fortunately I made it to her house before the ambulance left and we were able to follow them to the hospital. 

Emergency Room...been here before.  Two times before.  We were assigned he same ER doctor he had 6 1/2 years ago.  I know you are wondering how I could remember  such a thing.  You are probably thinking wow Julie what a memory. Yes, it's true. I am like an elephant...in size and memory.  Anyway, I will never forget the ER trip he had 6 1/2 years ago or the cocky ER doctor who showed little concern for our situation.   Dr. C (I'll protect the guilty by not using his full name) told us then that it was very unlikely dad would be leaving the hospital alive. Well he was wrong.   I've always dreamed of waltzing dad back through ER to prove him wrong.  But I have to admit that Dr. C had a much better bedside manner this time.  He listened to us and seemed to show genuine concern and compassion. It was a far better experience with him this time.

So after many hours in the ER watching patients come and go we are thankful that he is getting the care he needs. We are fortunate.  One CT scan and many labs later he has been admitted. The scan showed no signs of stroke or bleeding in the brain.  There are however other causes for concern. While I know he doesn't like hospital stays I am ok with this one.  He will be getting some much needed hydration.  They will also be monitoring kidney function, blood sugar, nutrition, etc.  

We are now in a room...finally. In the same building as his last several hospital stays.  Same smell to the building, same layout as the previous floors, same uncomfortable chairs in the room.  On a good note he is getting the same good care.  Some things never change.

Life will never be the same though.  We will all be changed by the events of this last year.  Someone very close to me shared with today that we grow and are changed by every day that we live.  Maybe it's the wisdom that comes with each new day that prepares us to deal with the future.  It could also be past experiences that have matured us and readied us to deal with our new circumstances.

While conventional wisdom may suggest otherwise, I will not lose hope that dad will completely recover.  My faith will not be diminished by doctors predictions.  I will cherish each day and each memory.  I will love him with all the love that my heart holds. 

Today he knows me as Julie Roxann, tomorrow it may be the water girl or 'that other blonde girl', but for today he knows me.  He knows me, he knows who I am and he knows that I love him. 

Live~Laugh~Love....exactly what I intend to do!



  

Don't sweat the small stuff.....

How many times have I heard, or even used, the phrase 'Don't sweat the small stuff'?  Now in addition to not sweating the small stuff I am also trying to appreciate the little things each day brings. 

Life has changed pretty dramatically over the last few months and everyone in the family has had to adapt.  Thank goodness for great husbands and kiddos who are willing to pitch in and help when needed--often without being asked-- to keep things running smoothly!

So instead of sweating the fact that my house has not had a proper cleaning in many months,  I am appreciating that my guys are doing a better job of keeping things picked up and even doing laundry!

I'm no longer sweating the fact that my scale is yelling angry things at me when I dare to step on it these days--which happens pretty infrequently due to my fear of watching the growing number.  That number continues to grow because I am appreciating the Gourmet Jelly Beans that my sweet mama has been keeping in constant supply for my never ending craving.  I know that she is dipping into my inheritance to pay for those lovelys!  I am also appreciating the Peppermint Ice Cream that hubby stopped to get me last Saturday.  Gone by Wednesday...I really, really appreciated it!

Not sweating that I am not able to keep in touch or get together with some of my friends as often as I would like.    But I am definitely appreciating
those that have been on those journey with me.  Terri, My friend, my ride share, my sounding board who so graciously listens when I need to talk.
Julie, My sweet friend who checks in on me to ask if I need anything and even offers her husband's help.  Jamie, My co-worker turned friend, who is always a a source of encouragement at work.  Robbin, my friend at work who has traveled a similar road and offers a motherly hug and prayers.  These are just a few of the friends that have ridden out this personal storm with me.  Then there are those special moments when out of the blue someone says or does something for you that you don't expect.  This was the case last week when a friend from High School unexpectedly mailed me a sweet gift!  We have re-connected on Facebook and I now wonder what lifetime friendship I may have missed out on!  She was so thoughtful and sweet in thinking of me at this time when she has already 'worn my shoes' herself.  I am thankful for the people that God puts in our lives and now consider her one of my angels.

Life has new perspective now and I plan to stop sweating the small stuff--realizing most of it IS small stuff and make more time to truly appreciate the little things that bring joy, happiness and value to our lives.

“Enjoy the little things, for one day you may look back and realize they were the big things.”    ~Robert Brault

What I didn't know.....

Cancer stinks...this I know.  Cancer is a tough battle...this I know. 

What I didn't know is that we would still be facing such difficult timeson this journey almost a year later. October 4th marked 11 months since we first learned of dad's  diagnosis.


What I didn't know is that we would not be able to make our annual family trip to our favorite mountaintop cabin this year.


What I didn't know is how deeply that would affect me. 

Certainly I'm sad that we are missing 'our' beloved cabin, breathtaking sunrises and sunsets and nightly campfires but what really saddens me is that not going is an admission that dad's health has not improved.  In fact it has declined steadily over the last few months. 

What I didn't know is how much it would hurt the first time he didn't know who I was.  Or how he would continue to ask about the 'girl' that was here last weekend.  Thankfully he seems to recognize me now..even if it's only for the nagging I do trying to get him to eat or drink more.

What I didn't know is the impact that this journey was having on my youngest son.  After dad fell again last week he asked me if I ever cried about grandpa.  I am pretty sure I have I have mastered the art of masking my feelings and emotions to those around me.  However, while the tears no longer come easy for me there was certainly more than one that escaped my eyes after hearing his confession that he sometime cried about it.  It's hard enough knowing what an impact this illness has had on mom, Amy and myself but I had hoped, naievely of course, that I could shield some of the hurt and worry from my kids.

What I didn't know is just how much the doctor's don't really know.  All the bloodwork, MRI's and scans in the world cannot tell us if dad will improve.  Medicine is not an exact science and I am having a hard time coming to terms with that.  What we endure now would be made so much easier if there was certainty of a full recovery looming on the horizon.  I know that when we see the oncologist this afternoon I will expect answers and information but will likely have to settle for guesstimates and statistics.

On the other hand....

What I DO know is that no matter how hard times get or how discouraging the future can seem at times that we, as a family, will continue to support each other with love, faith and encouragement.

So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal.  
2 Corinthians 4:16-18 

Turning back time.....

Oh to be able to turn back time, to know back then what I unfortunately know now.  Hindsight is indeed 20/20!  Rather than using this blog to simply highlight our journey and provide a positive glimpse into our world, I should have been truly chronicling all that has occurred over the last year.  Thinking back I may have fooled myself into believing that while we were indeed facing a terrible ordeal we would still have the same positive outcome we did 6 years ago.  Maybe not addressing the more difficult issues we have faced was my own method of self-preservation.  Ignorance is after all bliss.  Right? And there is always the excuse that life is meant to be lived not written about.  After all there are better ways to spend one’s time and energy than to document every minor happenstance.  Who has that kind of time?  And yes, that would be the same reason that my boys have half-completed baby books.  Though I am sure life will be just fine for them even if they don’t happen to know what solid food they first ate or the date they lost their first tooth.  At least I hope so.  Yikes, more regrets.

I now find myself truly regretting not documenting more details of our journey.  So moving forward that is what I plan to do.  For those who have followed our journey via the blog you are welcome to do so.  This will be my electronic journal where I can record my personal thoughts, observations and feelings.  I will do my best to keep it inspirational but be assured it will also be sprinkled with not only the good, but the bad and the ugly. The truth can be ugly and lately there has been lots of ugly.

We have spent the better part of the last two months telling doctors that we are concerned regarding dad’s memory and weakness.  Finally there was agreement that there had been a decline but no agreement to what may be the cause.  It could be aftermath of radiation…maybe not.  It could be due to dehydration…maybe not.  Or my absolute favorite from the quack neurologist we visited, ‘Chemo and Radiation can be hard on the body’.  No kidding Sherlock.  Let me call Unsolved Mysteries to clue them in. Ugh!!  I am very capable of seeing how hard it has been on both the mind and the body thank you.  And just a tip Dr. Quack…doctors like you can be hard on the mind as well.  I found myself wanting to scream the entire way out of your office.  You didn’t tell us anything that I haven’t already seen, heard or read on Google. 

What I do know with certainty is that we are not giving up the fight.  We will not lose faith, we will not give up hope, and we face each day as it comes.  We will be there for dad when his steps falter and he needs our guidance, we will encourage him to eat and drink to regain his strength, we will remind him that he IS at home, and perhaps most importantly we will continue to support each other.  No one would ever choose to face cancer, but given the choice I would choose every time to go through it with the support of MY family.  So while I can’t turn back time, I can turn to my family and turn to my God.  HE is after all ‘Holding My World’.

Take a listen…..http://www.youtube.com/watch?v=nJfGCKD9g_4

A tad bit selfish??

Driving to work in the dark this morning I found myself in prayer.  For me prayer has always been personal and intimate and contained within my own mind and heart.  Praying out loud has never been easy for me, and perhaps it was because I was alone in my car, but today the words flowed free and easy….though just at a whisper.  I certainly can’t have all the drivers on the highway wondering what kind of crazy person I am talking to myself, can I? 

I can’t imagine that I am the only one who sometimes feels selfish in their prayers. I mean we are told to ask and bring forward all our needs right?   Why then today did I feel like a selfish two year old who was willing to hold her breath and turn beet red in the face until I got what I wanted?   Easy….because I am selfish AND would pretty much be willing to hold my breath until I turned purple in the face if it guaranteed getting the answer I wanted! 

You see my daily my prayer requests always include the health and safety of my family, requests  for daily  guidance and other special prayer requests.  As you might imagine my fervent prayer over the last several months is for my dad to be healed of cancer---complete healing.  The cancer treatment may have helped eradicate the cancer—or maybe not—that would depend on the radiologist reading the scans but that’s another story.  The aftermath of the treatment has left my dad weak and confused.  We have sought answers, remedies and help from the doctors but they have failed to give us any solid solutions.  I know that my dad’s complete healing is not in the hand of any doctor or specialist but solely in God’s hands. 

What I would give to just be able to ‘will’ his healing to happen.  Stubborn is a trait that runs pretty deep in our family…we are blessed to have it from both sides.  Though mom would tell you it was a Carothers trait and dad would say we get it from the Whorton side.  Either way, we are all stubborn as mules and if it was only a matter of sheer will and stubbornness dad would have this thing licked!

Now here is a glimpse into the really selfish part of me.  We have our annual Mt. Nebo trip coming up in two weeks. Truly one of my most favorite places on earth!  We have our favorite big cabin booked where we can sit on the deck and enjoy the cool fresh mountain air and watch the most amazing sunsets!   This year our visit may not be a reality based on dad’s current condition. I want with all my heart for dad to be well enough to go back to Arkansas, to be close to his home and to be able to see his family.   I want us as a FAMILY to enjoy another trip and make more memories. 

Our family has been making this trip for years and truth be told I am not ready to give up on this tradition.  See…selfish right?   To not go though would be acknowledging that things are changing and that they may not ever be the same again.  I’m not ready for that.  Again with the selfishness.

 So my selfish prayers this morning…please bring quick healing to my dad so that he WILL be able to make this trip, not only make it, but make it comfortably without pain or illness and most of all to find enjoyment and happiness while there.   So since we are told to ask, I am asking.  I am asking all day every day.    

'Ask and it will be given to you; seek and you will find; knock and the door will be opened to you.  For everyone who asks receives, the one who seeks finds; and to the one who knocks, the door will be opened.'   Mathew 7:7-8

 If anyone reading this would like to add my prayer request to their prayers please know that I would not be opposed.  I would love to be able to post new Mt. Nebo pics on a future blog!   Until then....here is a pic with my wonderful parents from a previous trip!

I would like a day off please.....

I am ready for a day off.  I would really , really like a day off.  Not a day off from work. (though let’s admit it…that would be great!)  It’s not even a day off from dealing with the everyday annoyances like getting kids off to school, doing dishes, laundry, etc that I would like.  No, what I really want is a day off from life. 

Now before you go thinking that I am heading on some downward spiral let me assure that is not the case.  Time has just not been kind to my family this year and while we continue to move forward and live our lives it is not without reflection on the fact that cancer has invaded our world once again.  It’s no longer just about the disease but the aftermath of treatment left in its place.

 Heavily weighing on my heart for some time is the fact that life will likely never return to our once known ‘normal’.    Time is a gift and each day we have should be treated as such but frankly I have had some days lately where I found myself wishing to exchange or even return my ‘gift’.   Days when I see my dad as a shell of his former self, the days when he has to be picked up off the floor after another fall, days when we are begging him to eat and drink to no avail, days when doctors don’t seem to have any real answers or solutions.  Those are the days that I would like to trade away.  I would like to replace those days with days of old---watching him on his John Deere, taking care of his yard, teasing his grandsons about their hair length and girls and well, just being my dad.

So the kind of day off I am asking for is really a day off from my current reality.  Not too realistic huh?  The person who really deserves a day off is my mom.  I’ve always known her to be a strong person but she must face this new reality 24/7.  Nurse, chef, pharmacist, housekeeper and aide all rolled into one…Florence Nightingale meet your match!   I really wish we could be there more AND do more for her. 

Driving into work yesterday I heard an interesting analogy comparing backpack-wearing hikers to people carrying burdens.  While the hiker must sometimes struggle with his heavy backpack, someone else can come along and just lift it to ease the load a little.  It doesn’t mean his burden is entirely erased but the brief respite can ease his travels.  This is what I want to do for my mom…ease her travels as we continue this journey.

I know mom and Amy share my ‘Thanks’ to those who have already lifted our ‘backpacks’ during this journey.  It is a blessing to know so many people care and are willing to help lighten the load.  And for  those of you who have walked in our shoes, if you ever wanted to share ideas on how we could help lighten Mom’s we wouldn’t turn you down.

Since my desire for a day ‘off’ isn’t likely to happen I will just  keep praying for the wisdom, strength and peace to find some positive in our journey…making sure to soak up the scenery and memories we make along the way.  And lastly, I will try to start my day with a full tank of hope and remember to re-fuel before hitting empty. 

 "So teach us to number our days that we may get a heart of wisdom."    ~Psalms 90:12    

   

Ten months and counting......

Well here it is...the 4th has rolled around again...for the 10th time to be exact.  

Cancer Journey Begin Date - 11/4/11.  Cancer Journey End Date???

It's kind of sad when you remember certain things based on hospital stay dates, oncologist dates, radiatioin begin dates...etc. 

I think we did pretty good in the beginning of keeping things positive and not letting the 'cancer diagnosis' rule our life, attitudes or happiness.  Don't get me wrong, dad's treatment and well being was our priority, but we also found ways to keep things positive and light hearted and continued to celebrate the good things life brought.   Lately, however, I can't get through the day without thinking about how the disease and it's treatment have cheated our family. 

Lots of things have changed in the last few months.... Dad's condition has taken a turn for the worse.  Why?

No one can give us the exact reasons but based on recent visits with his primary oncologist and radiation oncologist there could be several factors at work here.  Duh...really?  I think I could have pretty much came up with the same lists of reasons they did...because even though I am not a doctor I could play one on TV.  Really...I just need the white coat and stethescope!

We would like to (and certainly have) blame the radiation.  Unfortunately looks like it could be other things as well. For those of you that read Amy's blog you will note that I am stealing or as I prefer to call it 'borrowing without permission' excerpts of her bullet points regarding where we believe we stand right now.  Let's face it...she does it better and I am just too pooped and stressed to try to put it in my own words.  Besides, we are sisters and we are supposed to 'share'.  Love ya Amy Lou!

• Somnolence syndrome – while this occurs mostly in children and to a very specific degree of onset to the time it will end, this is a possibility for Dad’s confusion.  And if this is the case, we should start seeing some improvement very soon. 

• MRI – is it clear or not? We are still not sure what we heard.  The doctor said that there was a large area that appeared abnormal; does that mean that the gray area is hiding cancer cells?  We don’t know.  It could very well be scarring from the cancer treatments.  The doctor did not have a chance to view the scans prior to our visit because some program was down.  Meanwhile this appointment has been on the books for almost 8 weeks....hello...

• Dementia v. Delirium – We do not have Dementia.  This is good.  Dementia cannot be reversed.  Delirium is a stage.  It goes with that Somnolence Syndrome.  The oncologist is scheduling an appointment with a Neurologist and we hope to get more info at that time. 

• Lab work – Dad’s kidney function set off alarm bells last week. This is not surprising considering how little he takes in.  He received a polite little pep talk about increasing his fluids to avoid dialysis.  We’ve begged and pleaded and Juju (that's me Julie)  threatened waterboarding...no lie.  Fingers crossed Dad picked up on the urgency and we will see better results next lab test.   HOWEVER, we believe that the phone call from our Radiation Oncologist just might have prompted the Primary Oncologist to be a little more proactive.  Mom got a phone call the next day to have dad brought in for IV hydration.  Good call docs!
• Weight – 30 lbs in 3 months.  Not a diet any of us want to be on. (Though, I, Julie, should probably be on)  We think we have found something that is helping.  Dad has the munchies… make your own inference. Lol!
•  
• Favorite daughter – While the doctor was testing some of Dad’s cognitive functions with questions, Amy had to jump in and ask the most important one, “Who is your favorite daughter, Pops.”  He looked at the doctor and grinned and said he knew better than to answer that.  Yep, that’s my Daddy!

• Praise for the family – The doctor made it very clear to Dad that he has the best care-takers working around the clock to make sure he stays safe and are nurturing him back to health (the praise goes to MOM!!! She is our family Angel).  He said we were doing the right things to try to get to the bottom of what was causing the symptoms by eliminating possible culprits one at a time; we have paused any further chemo, we are weaning off of steroids.  We go back to doctor in 2 weeks and hope to see some improvement.

In the meantime, we continue to take things one day at a time, sometimes one hour at a time, one patio trip at a time, one glass of water at a time...you get the picture!

We appreciate the phone calls and prayers from our family and friends and a BIG, BIG Thank You to their neighbors who have brought over food and offered their help in different ways.  We are very grateful to them for their love and concern.

This journey has continued far longer than we would have liked but with a little love and faith we know we have the perseverence to carry on.

“And let us run with endurance the race God has set before us”~

Hebrews 12:1