So…how am I doing?

  

To be honest, I’m not really sure.  Ok, I guess.  It hasn’t sunk in on what happened the last few weeks.  I’m not sure how to put this into a comprehensive thought process so here are bullet points to what has been floating around in my mind.

• ·         I feel like dad is out running errands or something and I just haven’t seen him.  It hasn’t hit me that I’ll never see him again.  I’m waiting for that day to come.  It’s not a question on if that day will come…it’s a question on when.
• ·       I want to type up the events of what happened.  I don’t know if I want to share, but I want to have the story for my scrapbook.  At the same time, I want people to understand that it’s not an easy story of he was there one day and gone the other.  It’s about how he did a complete 180 within 24 hours.  How he coded while we were at the hospital.  Talking about options with doctors…5 doctors to be exact.  About how we had to make the ultimate decision…the one he would have wanted.
• ·       I am completely heartbroken that our family trip that I had planned for in July is now no longer happening.  It was a trip specifically for my dad.  I don’t want to go without him so it has been cancelled. 
• ·       I have fallen in love with D all over again.  The man he has become through this series of events has stunned me.  He is so good, even though he hurts too. 
• ·       My dogs are incredible.  They can tell something is up…something is different.  May has given up her dog bed to be near me all the time.  One night, she even came into room with me while I got ready for bed.  When I sat on the floor to pet her she rested her head on my shoulder.
• ·       I am in complete awe of how many people came to the visitation and funeral. 
• ·       I didn’t really feel dad at the funeral or visitation.  But I feel him in the little things.  A warm breeze.  The very first buds that my peony bushes are creating.  The birds that come visit mom’s feeders all day long.  This hasn’t happened yet, but I know I’ll feel him every single time I hear a train horn.
• ·       I only teared up at the visitation and the funeral, I didn’t cry.  I held it in….because I’m like my dad in that way.
• ·       The day after the funeral I had the thought of, ‘Ok, all this excitement cane be over.  I’m ready for things to go back to normal.  I’m ready to have dad home.’  That same day I just really wanted to hug him.
• ·       I’m sick of the days where I wake up tired and my mind hasn’t kept up with reality.  And then it comes flooding back into view.  It makes me weak in the knees and sick to my stomach and I don’t know if that will ever go away.  And even though it pains me, I’m not sure I ever want it to go away either.
• ·       I’m trying to keep my weekends busy.  Like I said earlier, one day things will come crashing down.  And I want to keep myself busy.  I’m a planner and I need to keep having things to look forward to.
• ·       I’m a little anxious about what Father’s Day is going to look like this year.  I have a feeling I’ll be turning off social media that day. 

One of my three brightest lights in my life faded today. My heroic, brave, wisdom filled daddy passed away this morning about 9:57 after fighting a nasty disease for nearly six years. My already crushed heart is shattered even more, but I'm so glad you aren't in any pain anymore. You molded me into the woman I am today and I am so so proud to be your daughter, your one and only child. I am a part of you and that is something cancer and death can never take away. I have always loved you and I always will.

52 List : Seven and Eight : 12 Dates : March : Go on a Hike

The plan for the date was to go on a hike and have a picnic.  We had a late start to the day and had to make an errand before our date so we ended up eating lunch in the car after we arrived to the state park in the afternoon.

While we were having lunch, D informed me that he’d never been to a state park before.  I was stunned.  I know I haven’t been to too many state parks (I’ve probably been to more than I realize), but I’ve definitely gone to some.

D wanted to take a rugged route so that’s what we did.  We didn’t rush and we took our time.  The fresh air was particularly good this weekend.  We hiked about 4.15 miles.  We will definitely be making our way back here to do this again.  I bet the fall will be beautiful!

 

 Completed: March 25, 2016

13|52

Week Thirteen

March 25, 2016

Our March date was doing a hike.  It couldn’t have come at a better time.  The fresh air to clean out my head was needed.  Unfortunately, it didn’t last long.

Now we wait....

 For the last few weeks I’ve been respecting my dad’s wishes and kept things private until he was ready for the next wave of attention and well wishes to come flooding in.  I left little hints that something was happening.  Thankfully, for dad’s sake, no one caught on.  But the last few weeks my world has been crumbling down, just like it did 6 years ago. 

At the beginning of March, dad stopped treatment.  They checked the cancer and it is consuming 50% of his body.  Not as bad as when he was diagnosed, but not good either.  He was scheduled to discuss options with KU Med.

Then my last grandparent passed away.

And then he met with KU. 

For you to fully understand the magnitude of what I’m about to share with you, you need to remember where we came from.  Dad pretty much had all but one arm in his grave when he was diagnosed in May 2010.  He was told he would likely only live another 22 months.  We knew he had one of the more advance cases of multiple myeloma and that there was only one outcome – one day it will eventually take his life.  He was incredibly sick.  80% of his body was full of cancer, he had 2% kidney function, with very little chance of recovery.  He only had one option.  To fight.  To begin dialysis and chemo and eventually a bone morrow transplant from his own body.  In the course of 2 years, he had 2 transplants, one of which put him into remission…..for only a year.  This sounds wonderful, but remission for this kind of cancer/treatment should have lasted 4+ years.  Not a mare, 11 months.  The doctors deemed it failed.  So he began various cocktails of chemo.

2 months after Dakota proposed to me, we found out that dad had another form of cancer in is body, MDS.  His doctor wanted him to do transplant #3, a donor one this time.  Dad was given 1 more year before everything would take over.  He declined the transplant option.  His daughter was getting married and he didn’t want to take away from that.  11 months later, my dad was still here, healthy enough to walk me down the aisle and give me away.

He has been give 2 different time frames and he has outlived both of them.  He continues to shock the doctors with everything he has overcome.  I think anyone who knows my dad, knows his story, and sees his charts could all describe him in one single word – STRONG. 

So…he met with KU.  The cancer is progressing and options are becoming fewer and fewer.  He has 3 options and each one lead down a scary and dangerous road. 

Option 1: He can choose to do transplant #3, but with a donor this time...in New York City.  They are doing trials and have access to some ‘stronger, but softer’ drugs.  His brother is a 100% match, but there is a 20% chance dad will reject it.  See, he could never reject the previous transplants because it came from his own body.  But what happens when you don’t have your own bone morrow and you reject someone else’s?  You die within a week.  If he makes it out of the 100 days of isolation, there is still a chance he could reject the morrow later on down the road.  But if he doesn’t reject the transplant…well, that’s the first time we’ve ever heard of a form of a ‘cure’.  He would essentially be cancer free.  The chemo treatments would stop and all he would have to do is take drugs that will help his body not attack his new bone morrow.

Option 2: He can choose to do transplant #3 at KU Med, where he has had the other transplants.  He won’t be offered as many drugs as what NYC has.

Option 3: He chooses not to have the transplant.  He tries the remaining drugs that are out there until the cancer finally takes over.

And then on their way home they got a phone call.  His numbers in his blood work were going up.  He was off treatment for only 3 weeks and his kidneys were seeing it.  The cancer is aggressive and moving fast.  They admitted him into the hospital that evening.  Now he was given 2 options (not related to what they just learned hours earlier in KU).

Option A:  Get 6 very strong chemo drugs for 24 hours a day for 4 days straight.  It’s going to take away his immune system and will take another 4 weeks for him to recover.  He has to have treatment in the hospital so they can constantly monitor his numbers.  If something gets too low, then they can give him a boost.

Option B: Take some weaker drugs and see how it goes.  If he chooses this option and it’s not strong enough, then the harder drugs won’t be an option.  And then a transplant won’t be an option.

He chose option A.  He made it through all 4 days of chemo with flying colors.  He had 2 bags of red cells, and a bag of platelets.  And after being in the hospital for an entire week, he gets to come home and recover in the comfort of his own bed.  And even though that sounds nice, we aren’t in the clear either.  It’s day 10 that he will beginning to feel the effects….

Dad is still left with making the toughest decision of his life.  After 6 roller coaster years, we have finally hit the ‘oh shit, this is the beginning of the end’ phase.  Each option is difficult to choose and each option offers an unfavorable outcome.  Mom and I have both vowed to stand by his side in whatever he chooses.  He chose transplant #3 in NYC.  In about 4-5 weeks, after he recovers from this round of chemo, mom and dad will go to NY to see if he is a candidate. 

And that is as far as I can update you.  We wait.  NY will ultimately decide on if the transplant will happen or not.