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.
Friday, June 20, 2014
Saturday, June 14, 2014
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.
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.
Saturday, June 7, 2014
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.
Wednesday, June 4, 2014
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.
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.
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