When Daddy Meets Jesus

My 10 year old Aydin and I had quite the conversation last week.  It went like this.

Mom: Aydin, Do you have any questions about what is going on with Daddy?

Aydin: Ummm yeah, actually.  When does daddy have chemo again? 

It hit me, that Aydin was not aware that we were not going to do any more chemo...

Mom: Well baby, daddy isn't going to get any chemo for a while.

Aydin sat there looking around the room.  You could tell he was thinking.

Mom: Do you have another question?

Aydin: Yes...soo if daddy isn't going to be getting chemo, what is going to keep him alive?

Mom (Deep Breath): Well baby, we just need to pray.  Pray that daddy can get stronger and maybe gain some weight.

Aydin still had a look of thought on his face.

Mom: What are you thinking about buddy.

Aydin: What its going to be like...ya know.  

Mom: I know sweetie, I think about that too sometimes.

Aydin: Mommy?  Daddy's side of the bed is going to be empty...

All I could do was wrap my son in his arms and say, you can lay there if you want to.  

One day, daddy is going to get to meet Jesus.  He is going to prepare heaven for us and be ready to take us home when its our turn.  And the truth is, none of us know when that will be.  Isn't daddy lucky that he knows that heaven isn't so far away so that he can do ALLLL the things he's ever wanted to do before then?  Its kinda neat right?  We all say, if you heard the apocalypse was coming, what would you do?  So why can't you ask the same question when you are told you have cancer?  Because with cancer comes a fight.  But sometimes that fight is painful.  Sometimes that fight makes you tired and you lose who you are.  And its ok to say, Jesus, Take me Home.  

One day, my dear hubby will meet our creator.  He will be reunited with his brother, him mom, and his dad.  I don't know when that day will be, I just pray that I have the strength to keep my family together and Band-Aid their hearts...just for a moment.  I want my boys to feel at peace because their daddy is no longer in pain.  I don't want people to forget about my boys.  I want them to still have a cheering section in the stands.  I want people to treat them like NORMAL kids and most importantly I want my boys to SUCCEED.

So where are we in the journey?  Tony has developed aspiration pneumonia...again.  His liver enzymes have doubled in 2 weeks, white blood cell count is 17.6 (normal is 4.0).  Physically he has been very tired and sleeping a lot.  Mentally his fight is still on and strong.  Friday is a big day for us.  We have scans and come up with a plan.  A plan that doesn't include chemo.  

Saturday the boys come home from Camp Kesem.  For those that don't know what that is, it s a camp for kids whose parents have been effected by cancer.  It is put on my college students across the country and is FREE to the campers. http://campkesem.org/ its a place for the kids to get a break from what's going on at home and JUST BE KIDS!!!  I just want my younger boys to laugh, and smile, and not have a worry on their mind...just for a moment.

BEACH TRIP JULY 2018

CAMP KESEM UNC CHAPEL HILL

The Chemo Is Killing Him

I don't know what its like to lose a husband.  I don't know what its like to lose a child.  Right now I just know the pain of losing a brother.  Everything else has been in the natural order of things.

What I do know is fear.  Fear what its going to be like, guilt for thinking about it, grief of a past life, and anger for cancer making me feel all of this.  I feel like I've been given a curfew that isn't fair.  A curfew that I know exists but no one will tell me the time.

A month ago we tried a new chemo.  Tony was pretty adamant about trying chemo again.  He said a break in chemo would kill him.  He said he knows what has happened to others when they stop chemo.  Where as I disagreed.  I felt like the chemo was making him sicker, weaker, and lose weight.  But Tony was pretty determined to give it one more shot, and so we did.

Monday he weighed in at 138 pounds at Duke; A 7 pound weight loss in 2 weeks.  His oncologist turned his chemo down in hopes that he could maintain his weight and be able to tolerate this new drug.  By Thursday Tony was in uncontrollable pain.  When its that bad, certain meds help so he can sleep through the pain. Saturday morning I convinced Tony to get on the scale.  My fear was spot on, Tony had lost 12 pounds in just 6 days.  At the same time his oncologist had emailed me asking for an update.  We discussed the past few days and then I saw the last sentence in her email. 

Regarding Chemo - NO MORE. 

Tony is not able to tolerate anymore chemo...and honestly we are reluctant to try anything else.  And now...I'm in uncharted territory.

We have been doing this fight for over six years.  We are literally treating an invisible cancer.  I truly hate not having a plan. I hate not being able to physically SEE what we are treating.  Its hard to know what is the right decision to make.  I fear that the chemo is going to take him before the cancer will, but if he doesn't have chemo, its only a matter of time.  SO WHAT DO WE DO?????  Well, Monday we go back to Duke for labs, fluids, chest x-ray, and a quick visit with the doc, and go from there.

I know he's tired physically, but mentally he's very much still there and wanting to fight.  He's loving, kind, gentle, and still spending time with the boys.  He's making those times special.  He tells me not to worry, and that's he's ok. He allows the boys to play his phone while laying in his armpit.  And the boys just want that time with him.  It doesn't have to be anything extravagant. Just allowing that time to happen.  It means going to bed late, and sharing your bed with the kiddos.  It means dinner in bed with daddy, crumbs in the sheets, and a young one on my side of the bed.  These memories will be what matters.  So with that said, I'm ending this with, instead of typing, I'm going to join Tony and the boys in bed, and treasure every moment.  Cause at the end of the day, that's all any of us have.

PRAY FOR OUR HERO, OUR WARRIOR, OUR LOVE!!  #TEAMTONY

Back To The Hospital

Its been a looooong week.  First I can't thank everyone for the get well cards/notes, gift cards, helping at the house, prayers, and more this week.  Our warrior has been through hell and back.  From his liver enzymes being elevated, white blood cell count bottoming out, to poking and prodding, test after test.  What do the doctors know???  They don't.  The hard part is we just don't know because Tonys cancer hides and only offers symptoms. 

To sum it up, Tony went into the hospital Monday after a Duke ER visit that was suggested by his oncologist. Tony DID NOT look so good. He was in excruciating pain, low BP and labs were not pretty. On top of that he had finished a new chemo about a week prior and it was hard to know if what was going on was chemo or something else.

Tuesday morning he had a barium swallow study done that showed Tony has REDICULOUS esophageal spasms. Well DUH I knew that doc. That's not the issue. Tony had a dilated liver bile duct and his LFTs (Liver function tests) were a bit elevated. BUT with the power of God and prayer, they returned to normal in 2 days.

He had a scope done with biopsies Thursday morning and we hope to have the results next week.  The doctors are starting him on a new medication last night that should stop all the spasms that are going on from his esophagus down to his large intestine.  That may or may not be the culprit, but it can't hurt to try.  The drug will counteract any of the effects the opiods he is on for pain and initiate withdrawl from his gut.  Yes you read right INITIATE WITHDRAWL.

Its was a long night, but Tony is strong and was able to get through it.  If the opioids that they have him on have caused this, Tony should experience some relief in the next few days.  If not....well then I fear the worse....cancer spread.

At the end of the day, the good news is while he was in the hospital his blood pressure is now back to normal, he's hydrated, he and I have some one on one time and believe it or not, much needed rest. 

We hope to come home from the hospital today. Tony is ready and honestly, so am I. I know the kids are ready...its been a long week. I miss them dearly. If you're gonna be sick, and the docs can't fix it, we'd rather be sick at home.

So where are we....well we are just going to keep taking one day at a time and keep treating the symptoms. that's all we really can do. I trust our team of doctors, I just don't trust the data from the tests. That's a hard place to be in. I will write more later, but for now...this is where we are.

....Scan Results After The Break

Its been 6 weeks.  An interesting 6 weeks.  Lets start with the good news.  Our middle son Austin graduated from high school!!  BEST PART, TONY WAS HERE TO SEE IT.  This time last year, I wasn't so sure he would see Austin cross that stage, but he did.  The night he graduated Tony said, "Lord, please let me be here to see my little ones graduate."  Aydin and Ashton still have 8-10 years until those days come for them.  I listened to his prayer, and quietly thought, Thank you Lord for keeping him here for today.  Often times we forget to say thank you.  Thank you to our friends, and family.  Thank you to our doctors and nurses.  And often times, we forget to thank the good Lord upstairs for answering those prayers.

A week before Austin's graduation Tony was pretty sick.  We didn't understand why Tony was getting sicker when he was off chemo...except that meant the chemo was working and this break was allowing the cancer to spread.  So it was back to Duke we go.  They admitted him for some tests to include a spinal tap.  3 days before graduation we got the NEGATIVE.  The fear was that the cancer had spread to his spinal fluid...it had not.  But why was Tony still sick?

The weekend after Austin's graduation was busy.  Ashton's birthday, Father's Day, and Austin's grad party.  Tony hardly participated.  He was in bed most of the weekend.  My gut was in knots.  That Monday we went back to Duke.  Of course his labs looked great, but Tony, not so much.  Tony was very adamant about going back on chemo.  He said, "I know what happens to people who stop chemo.  This is my life we are talking about."  I had never heard Tony be so stern about his health.  The problem was though, he had maxed out his other chemo FOLFOX (5FU and Oxaliplatin).

I asked what would be next?  I was told Irinotecan.  "That's an older chemo right?" I asked.  And in fact it was.  I also said, what about scans?  Don't we want a baseline before we start a new drug?  We were told to come back the next day for scans and chemo.  UGH...driving and hour and a half home to drive all the way back the next morning.

The next morning while Tony was waiting on chemo, they did scans.  Tony started the new drug and within minutes started feeling horribly sick.  They gave him another drug which abated the side effects and he felt better.  All the meanwhile in the back of my head I'm thinking...what are the results of those scans.  What about that spot in his lung?  What exactly are we dealing with here?  Just as I emailed the doc, the results came in.  I couldn't believe what I was reading...the spot that had doubled in size from March to May in his right lung...WAS GONE!!!!  IT WAS A MIRACLE!!  I continued to read his scan...then I saw it, A NEW SPOT doubled in size on his left lung.  I immediately called his doc.  She explained to me that it could be inflammation but there is really no way of knowing and that we will just have to continue to watch it.  They use the term Wax and Wane.  I continued to read but nothing really to discuss.  Concerns I had was the slowing down of his bowels and some bile duct dilation which both can cause obstructions.  We don't need that right now...

Before I knew it, it was time to go home and it was time to share the next chapter of our journey with the kids.  I called them all into the living room and said, dads going back on chemo.  Matter of fact, he had it today.  Their faces all dropped and they just looked devastated.  I said its back to Duke every 2 weeks.  I want you all to be prepared he may lose his hair this time.  That hit them harder.  Its easier to pretend that Daddys not sick when he doesn't "look" sick. Alec was on a cruise so I wasn't able to tell him until today.  His response...WHY?!?!?!  He was not happy about the news. 

Aydin on the other hand has been doing lots of thinking.  The other night he was lying on the couch with tears in his eyes.  I asked what was wrong and he told me he's been thinking about what life would be like if daddy, well you know mom....died.  I took a deep breath, fought back the tears, and decided to share in his fear and acknowledge it.  I told him that even though none of us are promised tomorrow, that I too have the same fear.  I told him we can be scared together so that we don't have to feel this way or be scared alone.  He also asked me what Tony was like before he got sick.  What kind of daddy he was.  It really started to put more of his feelings and fears into perspective.  I asked the older boys to share stories of their childhood with Tony, with Aydin and Ashton.  These stories are important and so are the memories.

To sum it all up, I've also learned this is the nature of the beast of stage IV.  Some scans will be good, some won't be good, sometimes spots pop up, and sometimes they don't.  The truth is, I know there will be an end one day...but it doesn't mean I have to LIVE our life that way.  We wake up, we put BOTH feet on the floor, and we continue on with our journey.  What is the famous saying, Life is a gift, that's why its called the PRESENT.

...And Now We Wait...Heavy Heart and Tears

Today was a long day.  Not only were we of course running late due to traffic on 95 and 40, today was scan day.  Scans that were supposed to be May 21, were now May 7...today.  Tony hasn't really been getting chemo cause he hasn't been well enough.  Between high white blood cell counts, infections, and more, our dear warrior hasn't received but 1 dose of 1 of his 2 chemo drugs in the past 6 weeks.

In March his CT showed a possible infection in his lungs.  Antibiotics were prescribed however Tony was still coughing in his sleep and running low grade fevers.  Nothing seemed to get him better, but he really wasn't any worse either.  His mental state has been kinda blah.  The doctors and I tossed that up to he's still grieving.  I mean shoot, who wouldn't be right?

My stomach had been in knots all day but more importantly since the end of January when the pneumonia and other junk in his lungs started.  Chest XRAY last week didn't tell us much except that he didn't have pneumonia...it was something else...but what exactly.

CT scan today showed the spot on his lung from march that was thought to be an"infection" was now more solid and had doubled in size.  Unclear metastasis the CT says.  Can't confirm or deny.  The question?  Does it matter when it comes to a Stage IV patient and course of treatment?  Honestly, not really.  Either watch it and see how he does over the next couple of months, biopsy it and move on to the third line harsher chemo that he STILL has to save his strength up for, or what?  WHAT is the plan?  Why don't you have the answer?  But honestly we don't know until we consult with the pulmonary team.

Tony's cancer is nearly impossible to detect on scans but dear God in Heaven we have to know something.  Nevertheless, there was no reason for Tony to continue his current emo over the next few weeks....especially if its not working.  Tony needs time to heal and regain his strength.

The Family - The older boys know and we have decided to wait until AFTER Austin's graduation to rescan and test to see what that spot is doing.  The younger boys are just excited that daddy gets a break in chemo and going to Duke.

Me?  I'm a damn mess, but I have to stay strong when truly y'all I just want to cry and crawl into bed and cuddle up with Tony and forget about the world.  Our 11th year wedding anniversary is coming up...I think I'll just lay in bed with hubby all day.  I just don't think any of this is fair and my family really could use a break right now.

Tony?  He's been awfully quiet.  He doesn't really like to know what's going with his body or what's wrong and but just how we can fix it.  He's not thrilled about the break in chemo cause of what we have seen in the past.  he's still grieving the loss of his parents while fighting for his life.  I can't even imagine yall, I can't.  All I know to do is love him through it.

thank you all for your continued support, love, and prayers.  Its going to be a long 6 weeks.

Cancer Is Tearing My Family Apart

Weddings, funerals, graduations, birthdays...these things bring us together.  We share memories, laughter, candles, cake...we celebrate a milestone.  Yes at death, many people celebrate so don't be all shocked because I included funeral in here...if you dress up, its a special occasion.  But who dresses up when you go to the oncologist, or the hospital for chemo?  Who picks out their favorite outfit to sit their kids or parent down to say, I have cancer?  Not ONE SINGLE PERSON.  and if you do, you are lying!!  cause I don't know one person that wears their Sunday best to an 8 hour poking and prodding chemo session.  When was the last time you were in a chemo ward ladies and gentleman?  Its not full of cheer or song...trust me.  The videos on youtube are one in a gazillion. 

When I sat down and told my kids that Tony's cancer was back, one latched on to me, one latched on to Tony, one ran upstairs, one put his hands in his face, and the oldest wasn't there...but found out somehow and called me upset.  5 different reactions all from the same news.  There were no celebrations, memories, laughter, or milestones, it was fear, anger, sadness, defeat. After a 5 year cancer free anniversary, WE all had to go through it...again.  

The #TEAMTONY page was created, the FoodTrain was started, T-Shirt orders and donations came pouring in.  All greatly appreciated and needed, cause Lord knows gas isn't cheap and neither are medical bills.  The support we received in the beginning was nothing short of amazing.  We put on this good front...but what was happening behind closed doors, was the complete opposite.  Cancer was tearing my family apart.  One was getting angry.  In his eyes, Tony could do NO wrong and I  was always the bad guy.  The nest one now understanding that daddy would have cancer forever broke his heart.  His life RUINED because his daddy can't do with him that his older brothers got to enjoy.  Another child, grades suffering because his FAMILY was put first.  What we needed was his priority.  Making sacrifices for his FAMILY was most important...not school.  Another son, emotionally not being able to watch Tony battle it again, so he runs.  Feeling lost, and like no one understands what he is going through, and feeling alone...because truly, deep down, he doesn't want to disappoint his dad and he feels like he's done just that.  Finally the last one, not knowing where he fits, where he can help, is he even accepted.  These feelings they all have when NO ONE...NO ONE understands.  Not me, not Tony, not their friends.  Instead of them leaning on each other, they resent it.

....And then, there's Tony.  Tony doesn't care.  He just wants his children to spend time with him, and help him.  But he can't get that from everyone.  And he gets angry.  He wants so much to teach them how to do things...oh and when the boys say, you would think he would feel this or would say that...YOU SON, don't know what he is feeling so HOW DARE you mention that.  Or people on the outside say, Tony needs to do this or do that...What he NEEDS to do is fight for his life.  

Finally, there is me.  How is this girl keeping it all together?  Coffee, writing, deep breaths, and boundaries.  I scream and ask for help.  Sometimes I get it, and sometimes I don't.  I don't risk my blessings by wishing negative on anyone.  Unfortunately this journey has taught me to remove the filter over my mouth and say how I really feel...good and bad.  And I've also learned that sometimes your best support comes from the strangers that send you an email to say they are praying for you.  Or the boss who says, take the rest of the day off and do what you need to do.  Or the friend that cheers on your son at field day cause you can't be there and gives them a Capri Sun saying, its from your mom.  Its the lady you met on the train who calls you out of the blue to say, something told me to call you today, or the best friends who have karaoke insulation night at 1am just to see you smile, or the girl friend who shows up with pizza so you don't have to cook.  

But the truth is yall.  My family is hurting.  MY HUSBAND is in pain and has anger in his heart that I don't have the strength or power to remove.  He is hurt.  He doesn't feel like the man he used to be, and lets face it, none of us allow him to be out of fear.  It doesn't help that Nov 1, 2009 he lost his brother, Oct 27, 2017 he lost his daddy, and 5 months later, Apr 4, 2018, we talked his mom to heaven.  Tony has OUT LIVED every member of his immediate family all while BEATING one of the deadliest cancers.  God has a message for him.  A message of hope and faith.  However, he feels all alone.  We have to all pray for him that he finds it.

We are a family that I have worked hard to blend, but cancer is breaking us.  And at the end of the day, Tony isn't the one that is going to have to live with regret, or pain, or guilt when he gains his wings, its us.  Its his child that didn't pick up the phone to call, his friend that never came to see him, or the stranger that judged him.

When someone gets ill or dies, everyone is there in the beginning...but its those that stay along for the journey that mean the most.  I encourage everyone who reads this today.  Do something nice for a family that is having a hard time.  Mow their grass and don't ask, just do it.  Offer to do laundry, take the kids for the weekend or the afternoon.  Bring them a meal, its doesn't have to be fancy.  Offer your elbow grease, or show up with a bottle of wine (fre wine for me).  Just be there for one another, and don't expect ANYTHING in return.

I Lost Him When He Got Cancer

I started grieving the day Tony was diagnosed with cancer.  I started the journey and didn't even realize it.  The day we heard cancer, I started no longer seeing myself growing old with him.  I didn't plan a funeral, I didn't pick out a suit, I slowly watched the man I fell so deeply in love with...change.  Things that used to be funny, weren't funny.  Things that were important to us, suddenly weren't.  And the people that we both swore would be there for us, just disappeared.  See cancer just didn't take away the man I fell in love with, it tested my vows, it tested friendships, it tested my faith, and showed me how to fall even deeper in love with him.

Its easy to get so frustrated and angry.  Why are you buying sports stuff Tony?  Really ANOTHER WATCH?  When the hell did you get into guns?  How are you too sick for this, but not too sick for that?  That is the grief.  The reason I find myself so upset and angry with Tony sometimes is because I lost the man I fell in love with. You see, the man I fell in love with didn't buy stupid stuff, he didn't collect guns, and he was so energetic he never missed a single ball practice.  The man I fell in love with hardly took Tylenol and now has narcotics to kill a heard of cows.  The tiniest light at night drove him nuts, and now all lights and TV's must be on.  He never slept walked, he never got upset, he always smiled, and always took me out. 

Cancer introduced me to a whole new man.  A man that has more strength than a man who can bench 700 lbs.  A man that reminds me that dates and going out are special and not expected.  A man with passion that has to still smile, when all he wants to do is cry and ask, "why me?"  I see a man that fought a battle harder than any solider in a war because lets face it, there is no RnR, and there is no heroic return home.  Instead its, do I get to live to see another day doc?  I fell in love with a new man that stole my heart faster than he did before.

For 10 years, I have stood by and seen Tony bury a brother, a brother in law, his daddy, fight to keep his family together, fight cancer, and now watch his mother slowly die of a broken heart...all while CONTINUING to be a good father, a loving husband, and a supportive son.  Now I'm sorry, if that isn't good enough for some people...but I am so grateful I lost the man I fell in love with and now have this AMAZING man changed by cancer.  Tony is EXCEPTIONAL

Cancer changed me too.  It has taught me organization skills where I can run 10 countries single handily.  I've learned how to ask for help, I've learned who I can count on, and how to set up boundaries.  I've learned patience, and wisdom, caring and being kind.  I've learned what unconditional love is.  I've learned how to love him through it.  I've learned about LIVING.

We as spouses get it.  When we say its been a long journey, but I didn't lose them when they died, I lost them when they were diagnosed...very few truly understand what it means.  But the other side of the coin is, we also fell in love all over again...with someone new.  Someone that was stronger than our first love.  Our warriors learn to be more appreciative, they tend to be more sensitive, and they tend to be more understanding.  Now that's on a good day, cause on the bad days, lord we are grieving that first love and miss them oh so much.  That's why we are sad and angry...cause we are grieving life before cancer...and that's ok, cause our warriors do it too.

It hurts.  It sucks, its painful.  I'm tired, I don't know how I do it, so please don't ask.  I don't have a choice, and neither does Tony.  There is no alternative for us.  Instead, please just come over and help, be a friend.  I am so tired, I don't know which way is up or down.  I can't thank our friends enough who are there and we love you dearly.   Tonight though, I'm grieving my old life.  I'm stressed today.  I'm tired of crying today.  Today...was a hard day for me.

So tonight before you all go to bed, look at the person you love.  Embrace them, love them, tell them how much you care about them.  Cause there are lots of spouses out their grieving a loss.  That can't have those conversations anymore.  That just want to be loved how they once were.  There is a father who just wants his sons to love him regardless.  I pray that our boys SEE that Tony is LIVING by example of getting up and fighting every day...for THEM.  I pray that my younger boys continue to see their daddy as a hero.  I pray for peace  for his mother.  Finally, I pray for those that judge.  Those that judge my family and are causing us pain.  I thank those who are there for us bringing us joy, and meals, and company...always.