Tomorrow

There have been moments of hope this week.

There have been days with big victories this last week.

On this road to recovery, every victory is big.

There are no small victories.

None.

But I need to be real about what this week has really been like.

I have never experienced the kind of darkness that I have felt this week.

There have been days of absolute darkness.

Days that I have counted down the hours for tomorrow.

Just so today would be over with.

And because tomorrow couldn't be any darker than today.

But then tomorrow is here.

And it's just as dark.

If not darker.

And so I start counting down the hours for the next tomorrow.

A New Storm

My man wasn't even home 48 hours when I started noticing the signs of a new storm.

I brushed it off thinking he just went through his most brutal round yet, this recovery is bound to be just as brutal.

But by day three the clouds of the storm were closing in.

He was just not getting better.

He was actually getting worse.

I made the decision to take him to the ER.

They did a CT scan of his brain.

And then the storm hit.

Multiple suspicious looking spots were found.

Multiple.

They quickly got him in for an MRI to confirm exactly what they were.

They are not tumors.

They are brain lesions from multiple strokes.

It was deterimined that they are watershed strokes.

Watershed strokes are brought on by low blood pressure.

Low blood pressure.

The very thing that almost sent him to the ICU his last week of therapy.

The doctors have no answers for how long this storm will last.

But they are very encouraged with what my man is able to do.

And for the improvement that has taken place in just 24 hours.

They anticipate that with time, this storm will pass.

And my man will make a full recovery.

Dan has a very long road of recovery ahead of him and it will take many many baby steps for him to get there but I have no doubt he'll do it.

Normal

My man is hanging in there.

It's been a tough week this one.

We are still hanging out on floor 14.

He got his last dose yesterday.

For a total of 12 consecutive doses.

His body is taking its time to bounce back.

Each week had its fair share of issues.

This week had issues that were all over the board.

His body seems to respond differently with each round so it's difficult for his team to know how to approach side effects when something that worked last round isn't working this round.

Liver issues are the major issues preventing him from getting discharged.

His doctors remind me how normal all this is:

Low blood pressure, low creatine levels, high creatine levels, confused state of mind, cappilary leak syndrome, bilirubin levels, high heart rate, high fever, jaundice.....the list goes on.

I wish I could say that makes me feel better.

But it doesn't.

Because there is nothing normal about cancer.

Nothing.

I personally am a bit discouraged.  I'm tired.  I just want this to be done.  I want real normal back.  I'm done with this cancer normal.  Because there is nothing normal about it.

An update and prayer request

I'm just gonna say it like it is.

Round two.

Week two.

Is kicking my man's butt.

His body is just isn't tolerating the doses like it has before.

He's only had five doses.

His blood pressure is having a rough go at it.

He's had blood pressure issues in the past.

But nothing like this.

My man is currently experiencing a side effect called capillary leak syndrome.

 Chemocare.com definition: A serious, but very uncommon side effect of Proleukin or IL-2.  Capillary leak syndrome is a potentially serious disease in which fluids within the vascular system (veins and capillaries) leaks into the tissue outside the bloodstream.  This results in low blood pressure and poor blood flow to the internal organs.  Capillary leak syndrome is characterized by the presence of 2 or more of the following 3 symptoms; low blood pressure, swelling, and low levels of protein in the blood.

Today we were informed that his floor is just about tapped out of meds that they can give him to help get his blood pressure back to normal.

The next step is for him to be transferred to the ICU.

We should know in the next 5-6 hours.

There is also the possibility that they will just hold off on his IL-2 doses for awhile to let his blood pressure get back to normal.

Neither of these are options we were hoping for this week.

Would you please pray for my man?  Please pray for his medical team to know how to move forward with getting his body to a place for more doses.

We are discouraged and our spirits are worn.

Random Thankfulness

I'm thankful for daughters that are being mom and dad for a week to their younger siblings.

And who are obviously more thoughtful and artistic than the real mom and dad.


I'm thankful for nurses Sarah, Melinda and Heidi.

Especially Heidi, the night nurse.

Hands down one of the most quiet night nurses ever.

No turning on bright lights at three in the morning or loudly announcing she's here to do blood draws.

A quiet night nurse is a very good thing.


I'm thankful for the random act of kindness from a stranger in the hospital cafeteria.

A lunch never tasted so good.

Thank you.

I promise to pay it forward.


I'm thankful for bed alarms.

Danny Boy, I'm the one who ratted you out.

And I'm not sorry for one minute that I did.

It was done for your own good.

I'm sorry you feel like a prisoner but you'll get over it...I kinda doubt you'll even remember any of that phase anyways.


I'm thankful for the conversations that were created because of curious questions.

"Are those your kids?"  "Is your husband a teacher....are those his students?"  "How did you know what special need or what age to adopt?"  "Have you ever wondered why God allows so much suffering?"

And for the compliment from Nurse Elena that was very kind but made me laugh, "this is like a work of art and should be called 'Expressions of Love'."

I'll be sure to let you all know when I have my first art showing of  "Expressions of Love" and you can experience it in person.


I'm thankful for a breathtaking view.

Clouds and all.

It does a soul good.


I'm thankful for all my prayer warriors and life cheerleaders.

Where on earth would I be without all of you?

You make this journey feel a little less lonely.

And you make a girl feel loved.


I'm thankful for a brother who calls daily to check in and asks if I need anything.

And then brings me anything I need.


I'm thankful for small bags of medicine.

You're looking at an actual dose of IL-2.

And the large doses of hope they bring.


My man has had 11 doses.  #12 was to be this morning but the last twelve hours were rough and they have decided to hold off.  He still has two doses available to take so hopefully he'll hit that 12th dose.  Either way his team is amazed that he has not had to miss a dose up until the double digit mark.  They are very encouraged. 

He is still hanging out in the Crazy Town phase however it is just more confusion than hallucinations for which I am very thankful for.

Please pray for his body to recover in the next twelve hours so that he can get in another dose.
With Love and Thanks
-Danae

Round Two

Round Two.

Just like the first round but with a bit more intensity.

The side effects seemed to come on rather quickly.

After just two doses my man was feeling the side effects versus them coming on after doses five and six the first time around.

Round Two.

Where the nurses are like old friends.

And they welcome you back home to Floor 14 with arms wide open.

We have been blessed with some of the most amazing and compassionate nurses.

Round Two.

I know the routine but that doesn't make it any easier.

Yet it is easier because I saw the results from round one.


My man is doing well despite the side effects hitting him earlier and harder.  He has not skipped a dose yet, and today he passed the halfway mark to 12 doses with dose #7.

Today he also entered the phase I call, Crazy Town.  Hallucinations and confusion have begun to set in.  I'll admit at times it is quite entertaining.  Like when we wakes up and says "Let's play a game of tic tac toe and then go out for Italian food." But then it gets frightening when he tries to get out of his bed because he sees bugs in it.  Last round this phase didn't come in to play until late in his round and it ended quickly because his doses were soon over.

Prayer requests would be that his body will continue to stay strong enough to continue to get additional doses.  He has not had any real major issues that would require a dose to be skipped and that is amazing.  Please also pray that the Crazy Town phase will soon end...as funny as it is at times it really does scare me when he tries to get out of his bed or tries to stand in it.

Thank you, Friends. 

Home Run

He had his scan today.

The one that would tell us if he hit that home run.

The car rides to and from his scans are always quiet.

We drive together but we never say much to each other.

On the way to his scans I think we are caught up with the what ifs that are circling through our heads.

On the way home from his scans our minds are caught up with the news of what was found.

He has have never had a scan result where a new tumor was not found.

Until.

Today.

My man hit a home run!

He knocked it out of the park!

Do you see the last part of that wordy medical sentence?  The part that mentions number?

There has been a decrease in the number of tumors in his lung!

Not only did all of the tumors in his body shrink but his lung- where he had at least a dozen tumors- saw a significant decrease in the number of tumors.

This went beyond our wildest dreams.

We were hoping the tumors would be smaller.

We were never ever expecting that some would actually be gone.

The car ride home tonight was just as quiet as it has been in the past when we received results our hearts didn't want to hear.

But tonight it was different.

The car ride home was quiet with disbelief.

With hope.

With joy.

And reliving that home run.

So what's next?  As good as today's results were, my man still has cancer and he still has a battle to fight.  Come mid May my man will go through the same IL-2 treatment again.  And just like this time we will wait and see if the tumors have shrunk or are gone.   

But I thought he hit a home run? He did as far as IL-2 treatments are concerned.  The home run was not that the cancer would totally be gone, but that there would be reduction in tumor growth and numbers.  Had there not been a home run he would be looking at alternative drug therapy to slow the tumor growth.  The home run allows him to stay in the game.

I know I've said it before but I'm going to say it again....Dan and I are so very grateful to those of you who prayed for Dan, our family, followed his journey, encouraged us and loved us.  
With blessings and love, Dan & Danae