When Daddy Dies

I saw him lying there on the floor.  He looked as if he was just sleeping.  Could this be real?  Why did this happen?  Did he just lay down his life for his son?

Tony's daddy struggled with Tony's cancer diagnosis, especially the recurrence.  I remember him being in the hospital in the ICU back in June begging the doctors NOT to make me choose between my father in law and my husband.  I was caring for both of them, but at the time Tony hadn't started chemo and Robert needed my undivided attention.  He was finally on track with his medicine and doing so well...and then Tony started chemo.  Its like his heart couldn't handle it.  He burried his pain and tried to hide it from all of us.  But he didn't have me fooled.  We made a pact to stay healthy.  We had to be strong for our spouses, we had to be strong for Tony.

It was Austin's senior night and of course we were running late.  Robert called and I had missed his call :(  He had called Tony at 741pm that night telling Tony he had a hard time breathing. Tony told him to call 911 because we were at Austin's football game.  Tony's mom called Tony and said Robert had passed out on the floor, this time I called 911 but they were already in route. When EMS got there, he was already gone.  A massive heart attack in combination with COPD.  I'd say, maybe even a broken heart.

Tony's mom was also not doing well.  Her vitals were all over the place.  "PLEASE," Tony begged, "Take my mom to the hospital.  I can't lose both of my parents tonight."

While Tony's mom was in the hospital I did the hardest thing of all, asked for help.  All hands on deck.  Had to get their house cleaned.  It took a whole day and then some, but with the help of family and friends we got it done.

Tony's mom came home to our house.  She didn't want to see anyone while she was in the hospital, but now people were coming over to see her and Tony.  We finalized a few things with the funeral and took her to get her hair done and pedicure.  ANYTHING to make her feel a little better about herself.

Someone in my position, a caregiver to a cancer patient, has thought about being left behind.  Being a widow/widower.  I thought about someone trying to tell me what I could or could not do if something happened to Tony.  AND trust me...I DARE THEM.  I DARE someone to tell my mother in law she can't eat a piece of candy or smoke a cigarette.  She just lost her husband of 46 years.  Give her a break!!

Robert Leonard passed away suddenly and painlessly.  But he left a legacy, and one that he should be proud of.  He left beautiful land, and a place to fish.  He left a wealth of knowledge and stories of strength and courage.  He was a HERO and a PROTECTOR.  He was buried with full Military Honors.  The folded flag was presented to Tony's mom with tears pouring down our faces.  Tony collapsed on his father's casket while my youngest Ashton broke down and cried so hard and loud.  I can't imagine what its like to lose a parent.  I still have mine.  I still can pick up the phone and call mine and say I love you.

The whole time while I watched my boys cry over their Papa...I couldn't help but anticipate what it will be like for them...when Daddy Dies.  Whether its a month from now, or a year, or a decade, one day it will happen, and I don't care WHAT they say...ALL the boys, all 5 of them, are daddy's boys.  Just like Tony and Jeff, were daddy's boys.

Tony's strength through all of this has been extremely inspirational.  He is just so strong and upbeat right now.  He's making the hard days a lot easier.  He has his moments, but his daddy wouldn't want him to cry and be sad.  Death isn't always sad as we say in our house, being in heaven with God is a gift!!

I'll miss you papa in law...I'll think about you always.  I'll keep your stories alive.  I'll keep this family together.  I'll love you forever.  xoxo Your Daughter In Law

The Struggle Is Real...And So Is His Pain

There is a part of care giving no one likes to talk about.  The guilty part.  The part when the doctor reduces or increases chemo.  The part when treatment decisions need to be made and you always seem to chose what WE think will save our loved ones life when if fact...it just may be speeding up the process of the inevitable.  What if the decision was wrong?  What if the best choice was to just do nothing and have faith that God will heal or allow you to enjoy your life without having to deal with poison to flow through your veins?  This is a struggle I deal with with Tony every other week.  The last 3 rounds of chemo have all been different.  Round 4 was normal 5FU, round 5 was 5FU + Oxaliplatin (FOLFOX), round 6 FOLFOX with a 40% reduction in 5FU chemo because of side effects and heart issues that seem to be arising :(

2 weeks ago I found myself calling 911 because Tony was having chest pains and I ran into our bedroom and through my ear on his chest.  His heart was out of sync and beating all funny.  I of course was scared until EMS showed up and he was perfectly fine.  Go figure right?  I was ready to scream because here we are again with symptoms with no documentation or evidence to be able to treat properly.  At the hospital they of course couldn't find anything and we came home.

The next few days Tony's had increased pain and it seemed as though his meds didn't work at all.  So we would dope him up give him an ativan and knock him out to sleep through it.  And don't judge until you are going through it. Its not easy watching your loved one in so much pain, you'd rather just watch them sleep.  Like when your hellacious 3 year old finally falls asleep after such a long trying your patience day...you walk in to check on them at they are sound asleep.  Trust me when I say, its the same.

My struggles are real and only God can judge me.  I think about life if Tony completes this journey and then feel guilty for even thinking it.  I worry about my children after their daddy is gone and I get angry when people tell me, I'm young, and strong, and will find a way to move on.  Don't tell me when I am loving my warrior through it, instead please just come do my laundry or hold me when I cry.  No words will comfort me right now, for I am scared like everyone else...I however am not allowed to show it.

Not The Answers We Wanted

I'm sitting here typing trying to figure out how to share the news that I was told on Friday.  Its news that made me cry, news that made me scared, but news that also motivated me. 

A month ago Tony started throwing up multiple times a day.  He can't keep any food down.  I had no idea it had gotten so bad until I came home from a football game and Tony told me he had thrown up 12 times while I was gone.  I also noticed a couple of days later enemas appeared in the trash can.  Tony went from diarrhea to constipated in a very short time.  He had kept that part from me.  No med changes, same chemo, but new symptoms.  I also had noticed Tony's pain had returned and I began to worry.  When we went to chemo we shared this information and they ordered emergent CT of his abdomen and pelvis only to learn there was NOTHING wrong...that they could see. So we went upstairs for his 5FU chemo and went home. 

This round was odd.  The vomiting was worse and Tony started vomiting only through his nose in his sleep.  I tell you this not to make you sick, but to maybe help another person one day.  I emailed his doctor immediately.  When we went to Duke last week and finished up scans with chest and head. 

*RESULTS* Aspiration in lungs has increased.  He's throwing up so much he's now having it collect in his lungs.  And then I saw it.  I was reading the CT results to see, "Distal Esophageal Wall Thickening."  In the cancer world, thickening is NOT a word you want to see.  I again, emailed the doc immediately.

The whole drive home I fought the tears.  I knew something was wrong and started stomping my feet.  I demanded an endoscopy and ASAP.  We got a barium swallow study only to learn that he has a narrowing in his esophagus where the cancer was the first time.  😟  I sent the results to his doctors and asked his oncologist to call me.  We had a great conversation and just as I had suspected, based on symptoms, the swallow study, and CT scan, the current chemotherapy is not working....

Keeping that news from Tony was harder than ever.  I was fighting tears, anger, frustration, and looking at the man I love with every drop of blood I have, fighting so hard...yet it doesn't seem to be doing a bit of good, just laying there clueless as to what is growing inside of him.  I finally broke down yesterday and told him.

"What's wrong baby?  I know you are keeping something from me." he said softly
"I don't know how to tell you." I began to cry
"I think I already know." He answered
"I don't think the chemo is working baby.  We are having to add another drug to the next round."

Tony tried to hide them but I felt his tears drip on my arm as he buried his face.  He said, "its not fair," Followed by, "OK, I'll do whatever I have to do."  He is such a trooper, but I fear that this treatment will be too hard on him.  Its very similar to what he had 5 years ago. (Oxaliplatin is the chemo they are adding) Then I question why are we doing this?  Will this even work? What kind of wife would want the love of her life to go through this.  THEN...I remembered.  HE wants to fight.  HE is not ready to give up and I HAVE to support him either way.

Telling the older boys that the chemo wasn't working was not easy.  I practiced on a couple of family members so that I wouldn't be a blubbering fool.  The boys sorta take their lead from me when it comes to Tony's health.  If I'm worried or crying, they do the same.  I HAVE to stay positive and so do they.

**THE RAW PART**  How the hell am I supposed to stay positive?  Its hard when all my friends husbands, wives, and dad's are entering or are in Hospice.   I'm sitting here every night kissing my love before bed wondering if that will be the last time.  I ask myself, if all this pain he is in is only going to give me a few more weeks, WHY?  WHY DO THIS TO HIM?  I want a CURE not a treatment.  Lets try this lets try that.  And when we fall...we just keep getting back up.  THATs WHY cause just maybe just maybe, one of those tries...we won't fall.  We will have success.  I PRAY!!

The plan now is scope next week, followed by 5FU and Oxaliplatin chemotherapy.  Nothing cold for Tony moving forward.  I'll tell you what though...what was NOT in the plan, Tony breaking his thumb and needing a cast.  😒  SERIOUSLY!!  If cancer isn't enough, we have to break bones.

In the mean time, I will love on my hubby, give him extra kisses, and snuggle with him every chance I get...don't forget WHY you're fighting.  Its the relationship we treasure.  I fight for the love of my life.

End Of The Road

What does it mean when we come to the end of the road?  What does it mean when we hear, "Just take me home."  At what point do we let our loved one rest?  When do we say enough is enough?  My dear friend is coming to the end of her journey.  It hurts.  It makes me sad.  I think about her boys and her husband.  I think about the urinals she collects and has all over her bathroom.  Her smile just lights up a room.  But I know she is so tired.  She is holding on for all of us and at WHAT TIME do we say, I love you and its ok...I'll be ok.  The kids will be ok.  Our first instinct is to call every major cancer institute and book the first flight to the nearest clinical trial location.  We get on the computer and we research the latest drugs...when what we really should be doing is lying next to our loved one and holding them tight.  Then the guilt.  Did I try hard enough?  What if that drug worked?  Will we ever know?  Oh the guilt.  But what most people on the outside DON'T know...is the person we are fighting for, the person we love...when its time, they aren't the same person anymore.  The journey has taken a toll on them.  The words we share aren't whispers of love like it was.  Sometimes in the middle of the night for about 5 seconds you may share it...but now when our heads hit the pillow our eyelids close so we can dream of how it once was and dream of the hope that when you wake up in the morning, maybe it was just all a bad dream.  The truth is, letting your loved one rest may be easier than watching them go through more pain and poking and prodding just to selfishly allow us 1 more month, or 2 more weeks with them on earth.  I say all this with tears pouring down my face because one day, I will be the one making that decision for Tony.  When is enough enough and have we come to the end of the road? There comes a time in our lives where we have to say good bye. Its never when we want to, its when they need to. They get tired, and worn out, but trust me, they are only saying, please remember us how we once were. Remember the good times, remember the laughs, remember the stories, and smiles, for we aren't far away, just a memory. For now it is time for God to wrap his arms around me and bring me home.

None Of Us Are Promised Tomorrow

If someone told you you had 6 months to live, what would you do differently?  Makes you think right?  Would you still get mad?  Would you cry?  Would you go skydiving?  What would you do...or NOT do?  Well what if you were told your loved one only had 6 months...what would you do differently?  Do you tell other people?  Do you get angry?  Do you kiss your love one?  The truth is, when you tell people the words DON'T GIVE UP HOPE always come to light!!  Its ok to continue to watch my loved one suffer and in pain as long as I don't give up hope right?  When you don't tell people, you hold the stress in yourself and everyone asks you what's wrong all the time...truth is, we don't know what we will do until someone shares that information with us.  AND if you are anything like the rest of us you cry, get angry, and the worst part...start shutting your loved one out.  Have I been told Tony has only 6 months?  NO I have not, so please let me make that clear.  Is there a prognosis?  OF COURSE there is.  But I chose to share that with a few select people that WANT to know.  WHY?  Because my children's feelings matter.  WHY ELSE?  Because if you TRULY cared about my Tony, then your butt would've been spending time with him all this time not just when time is getting short.  SHOCKING I say that right? But its true. But we are human, and we have busy lives and we get caught up in our own lives that its easy to forget about our dear friends and what they may be going through.  Does it make you a bad person?  HELL NO!!!  Does it mean I don't love you?  OF COURSE NOT.  But I personally can not keep continuing to want for other people.  Its just too hard.

NONE OF US ARE PROMISED TOMORROW.  So if you are standing in front of someone you love...TELL THEM.  If you want to eat that piece of apple pie, EAT IT.  If you want to go to Figi, GO!!  Stop making excuses and enjoy life and make memories.

Tony and I have decided its time to make memories.  I already have regrets of not enjoying more good times with my brother before he died...I refuse for me and my boys to have the same regrets.  Tony keeps telling me its going to be ok...but I am so scared its not going to be.  While Tony is hooked up to his 5FU pump, he is so active and making me coffee in the morning, etc.  Its when that pump is disconnected...he's so sick :(  He looks so pale during chemo...but he says he feels the best he's felt in a long time...so I guess the chemo is working.

With that said...I'll end on this.  I experienced an amazing opportunity last week when I was asked to speak at the NIH (National Institute of Health) NINR (National Institute of Nursing Research) Caregiver Summit.  For those that don't know, the NIH is the primary agency of the United States government responsible for biomedical and public health research to include the National Cancer Institute and more.  Speaking at their NINR Summit was surreal. I can't even begin to tell you what a dream come true it was.  Being able to share my story and offer some experience, strength, and hope to others in my shoes was remarkable.  I love speaking and helping others.  I was emailed the other day by Cancer Today magazine asking to interview me for an article they are writing in their winter issue.  Talk about blown away.  You see, I love that I can give back, but I HATE that I my husband and kids are enduring this journey which gives me these opportunities. For anyone who'd like to see me speak, you may at NIH NINR Presentation  Our panel begins at 1:03:30, and I am the 2nd speaker at 1:25:00.  I learned so much at this summit and met some great people!! 

Never give up on your dreams, we are NOT promised tomorrow.  If you were told you had 6 months to live, do what you would do NOW!!!

Time For Poison

Here come the Hazmat suits...does ANYONE else see something wrong with this picture?  I mean really, why is it ok for me and Tony to sit there in our regular clothes and here comes the nurse in full HAZMAT get up.  What is she holding mind you?  Chemo...ahh yes the medicine ie poison that will save my dear husbands life...or so that is the plan cause we can't just sit there and do nothing.  And it worked before.  So here comes the medicine in an IV bag with a big HASMAT sticker on it.  I wish they still used the Mr. Yuck sticker. And for those of you who don't know what that is...look below

What will the new chemo regiment be...5FU (Fluorouracil) EVERY OTHER MONDAY for 46 hrs.  Everyone other Monday we will make the drive to Duke for labs, doctor appointment, and then infusion hook up.  2 hrs after the pump hook up, we will go home with the chemo for 46 hours.  A nurse will disconnect Tony from his pump on Wednesdays.  Needless to say, Mondays are going to be loooooooooong days.  I don't know how he does it.  How in the world does he find the strength.  Then again, people ask me every day, how the hell do I do it.  ya know with the kids and the job and the hubby and the in-laws, and my answer is simple...I just do it.  Tony always says, "Too easy."  like the doctor told him to take 2 aspirin and call him in the morning.  Never the less, I sat Alec and Austin down this morning and broke the new of how its going to be for the rest of our lives...or for the next few months at least.  I reminded them that their job is NOT TO BE STRONG.  That is MY job.  Their job is to be a son.  To do well in school.  Austin - Its your senior year of high school.  SAT, College Apps...or I'm dragging your butt to the Army Recruiting Station and pushing you on the Army bus.  I say with love of course.  I asked them to help me keep Aydin and Ashton out of my bed during the chemo days.  We can't have any oops-es with Mr. Yuck here and the boys. Otherwise, I expect them to continue to be a team with me.  Life will have to continue as it did 6 years ago.  Football is still on Fridays and Saturdays.  I still have to go to work Mon-Fri. my children still get bumps and bruises and the lawn still has to be mowed, dinner made, and so on.  I just would like it done without the bickering so dad can rest and maybe we can all save each other some sanity.

Finally - one of the boys busted out today that his father is dying and no one understands what WE are going through. As much as I HATED hearing it, I'm glad this one in particular is opening up.  Another one has been having nightmares about Tony dying and waking up in the middle of the night sweaty as hell.  I had a horrible nightmare last night about Tony's last breath.  I HATE THIS.  Tony is actually looking amazing these past 2 days and that fear is still haunting my home and my kids.  I have to bring normalcy back into my household.  I have to let the boys get away for a few days to enjoy life and THAT IS OK.  Soooo They all went away this weekend to a friends, or family's house.  Me, where's my break?  I don't want one.  I just want to lay in bed, curled up with my husband and enjoy the sound of nothing.

SURVEY SAYS....

What a few weeks it has been.  From there being a possible lesion on Tony's liver to maybe not, to Tony being super sick and not being able to keep anything down...my tears have been flowing harder than ever.  I feel like I'm watching the love of my life drift away right before my very eyes and I can't stop it.  He is pail, he is weak.  His cheeks are thinning and bones are more visible than ever before.

A great conversation with our nurse at Duke had me realizing the one thing I've always wanted for the past 10 years Tony and I have been married.  To be married in the Catholic church.  Its a bit of a process when you've been married before, but it means a lot to me and Tony promised me a long time ago he would make it happen.  Then cancer had to go and infest our lives but I never thought there would be a death sentence in our cancer journey.

Hope - they tell you to keep the hope and the faith and not to give up.  But when your loved one is stage 4, its soooo hard not to premonis what may come sooner than you had ever hoped.  I am just so tired of crying ya know?  I'm so exhausted from it.  I learned that blasting the radio and driving at 70mph screaming at the top of your lungs helps.  And its ok to let out that deep hard in your chest cry.  besides...no one can see you hopefully cause their eyes should be on the road.

Before you know it its scan day and drummmroll....wait stop hold tight, insurance has decided they need a peer to peer to discuss why they should pay for a cancer patient CT scan.  Thank you CIGNA for making this hard CIGNA who denied 3 years worth of scans CIGNA for his cancer to return CIGNA in 3 organs which we couldn't catch any earlier CIGNA so yes CIGNA why am I not surprised that you CIGNA would need to discuss his case with his oncologist CIGNA.  Oh you will only approve the brain CT if they ADD contrast to it...ok cause that makes sense CIGNA you want to spend more money.

Well 3 hours later CIGNA said it was ok to see how my husbands cancer was doing and we got the CT done.  What is the verdict you ask?  Cause YOU KNOW i already read the report :D

The spot on Tony's liver has disappeared.  This means there is NO question about there being a metastasis to his liver!!  :D  The spot on the pancreas has thinned out a bit determined the previous thought to be lesion was from surgery.  In other words...NO EVIDENCE OF DISEASE!!!  This is the best type of scan a cancer patient can get.  In Tony's case however, that doesn't mean much because his cancer doesn't tend to show up on scans.  We still know there is cancer in his colon and pancreas, its just a matter of keeping it under control with the maintenance chemo he will be starting.

The story of a stage 4 patient is good new is anything but growth.  We like words like stable, shrink, no evidence.  We know we will be living with cancer forever, but for today we are alive, we are blessed, and grateful to spend another day with our loved ones.  Why do I say we as the caregiver?  Cause I too am what my warrior is...we are IN THIS TOGETHER!!!