Although I'm not sure how "nutshelly" I can make this.
I will try.
For the record, my husband is one of the healthiest people I know. In 22 years of marriage and 24 years of knowing him, he has rarely gotten a cold or the flu and anything at all that requires a doctor visit.
In fact, when reviewing Kyle's medical records with the oncologist (the whole half a page), he (the doctor) flipped up the page, looked at Kyle and said, "Is this it?"
The stack for oncology is another story.
Here's where we began.
In January, Kyle developed a cough that would not away. As luck would have it he works in a Doctors office as the clinic administrator, so he asked one of the doctors who replied that he had seen many coughs this winter that hung around a long time.
If you live in Utah, and especially Salt Lake City, in January--you wouldn't even second guess a cough (or any sickness) because of our crappy inversion. Our air quality here makes all the "bad lists" every January.
This year, it was particularly bad. So having a cough? Not so strange.
What was strange is that it didn't get better.
The cough that is. And on top of it, he was starting to have night sweats, fevers, loss of appetite, loss of weight, vomiting, and generally just felt bad.
I know people say google is the "devil" but I have known this man for a LONG time and something was not sitting right with me.
In fact, MANY times I told Kyle that I KNEW something serious was wrong. I felt frantic and a HUGE sense of urgency to get to the bottom of this.
Over and over and over I felt urgency. A deep sense, mothers intuition, whatever you want to call it.
Something was not right.
I kept telling Kyle he had one too many "cancer symptoms" and it was making me nervous.
And he just wasn't getting better.
We headed out to Zions National Park for a late anniversary weekend in early February. The air was clear for 3 days and his cough STILL didn't go away. That's when I told him it was time for a real doctor appointment.
He went in and they went through lists of things. They seemed to think he had bronchitis or GERD or reflux or something and tried him on a slew of meds.
After 3 antibiotics and no change, I basically had a breakdown and made him schedule a full physical. The gnawing sense of seriousness was compounding daily. In fact, one day I called a friend from my neighborhood and we drove around talking while I wept in her car saying, "My husband is dying from cancer and no one will find it or help us!" (She probably thought I was insane and I felt a little insane at the time.)
On Monday, March 4 2013 Kyle had a FULL work up. Blood, labs, pokes and prods. All his numbers were within normal range. White blood cell count was a little high, but not frighteningly so. (again, people thinking it indicated an infection).
Kyle told the doctor that he had better to a CT scan or something to "look inside" before his wife would be consoled.
So he scheduled one for Kyle.
On Tuesday March 5, he had a CT scan. By early afternoon (perks of working in a doctors office--we get quick test results) the results were in.
There was something showing on his liver, possibly his lymph nodes and in his lungs. Our fears grew.
On Wednesday March 6, he had a liver biopsy at 7:30 am.
By 11:30 I was on the phone with his doctor who was telling me things like "malignant tumors", "primary liver cancer" and "metastic".
I walked around LDS hospital where the test was done with tears streaming down my face, sobbing, weeping.
By Friday March 8, we were meeting with an oncologist at IMC, who was saying things like "no cure", "treatment only" and "stage 4".
We left the office shattered. The world as we knew it had changed forever.
Apparently liver cancer is one kind of cancer you do NOT want to get.
We decided to meet with a Doctor up at the Huntsman Cancer Institute, only to ease our mind that we were making a wise choice about treatment plans and the future path.
But first we had an endoscopy and PET scan to get through to see if the cancer was anywhere else in Kyle's body.
On Tuesday March 12, we had a last minute endoscopy at 3:30 PM. Long story short, the stomach was clean for cancer.
Wednesday March 13 at 7:30 am, back to the same hospital for the PET scan. Same answer--no cancer in pancreas, it was still only where we knew it was.
Somehow THIS was good news! (My how your perspective changes when you have cancer).
We cheered and cried for the first time in 10 days that he ONLY had it in 3 places instead of more.
Wednesday brought our next doctor appointment with Dr Sharma at Huntsman.
As soon as we walked into that building, I told Kyle, "THIS is where we fight! I feel peace here! It is the right place to be."
The diagnosis did not change, the prognosis did not change, but I can only explain that something, somewhere, somehow spoke to my soul and said THIS is where we need to be.
For what reason, I do not know. Maybe I never will. I DO KNOW that this is where we should be though.
Thursday March 14 we started chemo. It will be an 8 hour day once a week for two weeks. Followed by one week off--the first chemo round is 9 weeks total. After which they will see how Kyle's body is responding. We hope for shrinking tumors, or tumors staying the same. We don't want any growing tumors.
It has been a whirl wind in a short amount of time. Some things we still cannot grasp. Some things are entirely TOO painful to sink in. So most things we take a day at a time. Someone said it best to me who has fought the good fight with her husband, "You are heartbroken, yet hopeful!"
But for NOW, we will fight for as long as we can....as hard as we can.
The very best thing the second doctor told us, after reviewing prognosis and timelines and all the awful numbers was this...
He turned to Kyle and said, "Now I just gave you all those numbers and statistics--but forget ALL of them now. You, Kyle, are the only 'Kyle' that has ever had this cancer and YOU will make your own numbers and your own statistics, not live or die or fight by anyone else's numbers." He told us to make plans, get things in order--and then set those things aside and LIVE and do battle for as long as we can.
That, in a sort of longish nutshell, is how we got here.
I couldn't end this post without thanking family, and friends and people I've never met, who have reached out to support us, love us and pray for us through this so far.
It is the most beautiful thing in the hideous ugliness of all of this.
Kyle and I lay talking the other day (he lays in bed a lot because he's tired...also SO different than how I've ever seen him)...but we lay talking we said, "There is a tangible feeling in the universe around us. You can almost reach out and touch it right now."
You can call it love, or the spirit, or the force or karma or whatever word you want to choose...they are probably ALL right anyway...but it is real. It is circling around us and holding us up in the darkest moments. It gives us peace and hope and strength when it seemed as if there were none of things left to find. It gives us courage to move forward and step through each new day.
Love is real, it's all we have anyway. There are so many things in this life that don't matter anyway. Things we worry about and fight about and fret about. So many of them so silly.
This, cancer, removes ALL of those things from your life.
Terminal, removes it one step farther. (further?)
So we would say to you dear readers, the thing I said when my husband was diagnosed....
"This is what I've got for today.... just LOVE the ones you love, hold them tightly, forgive quickly, remember remember remember what's REALLY important in life. Some things that we spend so much time worrying about do NOT matter at all. It's all about love."
It's all about love....that's what I STILL have for today!
Love,
Dorien & Kyle
Over and over and over I felt urgency. A deep sense, mothers intuition, whatever you want to call it.
Something was not right.
I kept telling Kyle he had one too many "cancer symptoms" and it was making me nervous.
And he just wasn't getting better.
We headed out to Zions National Park for a late anniversary weekend in early February. The air was clear for 3 days and his cough STILL didn't go away. That's when I told him it was time for a real doctor appointment.
He went in and they went through lists of things. They seemed to think he had bronchitis or GERD or reflux or something and tried him on a slew of meds.
After 3 antibiotics and no change, I basically had a breakdown and made him schedule a full physical. The gnawing sense of seriousness was compounding daily. In fact, one day I called a friend from my neighborhood and we drove around talking while I wept in her car saying, "My husband is dying from cancer and no one will find it or help us!" (She probably thought I was insane and I felt a little insane at the time.)
On Monday, March 4 2013 Kyle had a FULL work up. Blood, labs, pokes and prods. All his numbers were within normal range. White blood cell count was a little high, but not frighteningly so. (again, people thinking it indicated an infection).
Kyle told the doctor that he had better to a CT scan or something to "look inside" before his wife would be consoled.
So he scheduled one for Kyle.
On Tuesday March 5, he had a CT scan. By early afternoon (perks of working in a doctors office--we get quick test results) the results were in.
There was something showing on his liver, possibly his lymph nodes and in his lungs. Our fears grew.
On Wednesday March 6, he had a liver biopsy at 7:30 am.
By 11:30 I was on the phone with his doctor who was telling me things like "malignant tumors", "primary liver cancer" and "metastic".
I walked around LDS hospital where the test was done with tears streaming down my face, sobbing, weeping.
By Friday March 8, we were meeting with an oncologist at IMC, who was saying things like "no cure", "treatment only" and "stage 4".
We left the office shattered. The world as we knew it had changed forever.
Apparently liver cancer is one kind of cancer you do NOT want to get.
We decided to meet with a Doctor up at the Huntsman Cancer Institute, only to ease our mind that we were making a wise choice about treatment plans and the future path.
But first we had an endoscopy and PET scan to get through to see if the cancer was anywhere else in Kyle's body.
On Tuesday March 12, we had a last minute endoscopy at 3:30 PM. Long story short, the stomach was clean for cancer.
Wednesday March 13 at 7:30 am, back to the same hospital for the PET scan. Same answer--no cancer in pancreas, it was still only where we knew it was.
Somehow THIS was good news! (My how your perspective changes when you have cancer).
We cheered and cried for the first time in 10 days that he ONLY had it in 3 places instead of more.
Wednesday brought our next doctor appointment with Dr Sharma at Huntsman.
As soon as we walked into that building, I told Kyle, "THIS is where we fight! I feel peace here! It is the right place to be."
The diagnosis did not change, the prognosis did not change, but I can only explain that something, somewhere, somehow spoke to my soul and said THIS is where we need to be.
For what reason, I do not know. Maybe I never will. I DO KNOW that this is where we should be though.
Thursday March 14 we started chemo. It will be an 8 hour day once a week for two weeks. Followed by one week off--the first chemo round is 9 weeks total. After which they will see how Kyle's body is responding. We hope for shrinking tumors, or tumors staying the same. We don't want any growing tumors.
It has been a whirl wind in a short amount of time. Some things we still cannot grasp. Some things are entirely TOO painful to sink in. So most things we take a day at a time. Someone said it best to me who has fought the good fight with her husband, "You are heartbroken, yet hopeful!"
But for NOW, we will fight for as long as we can....as hard as we can.
The very best thing the second doctor told us, after reviewing prognosis and timelines and all the awful numbers was this...
He turned to Kyle and said, "Now I just gave you all those numbers and statistics--but forget ALL of them now. You, Kyle, are the only 'Kyle' that has ever had this cancer and YOU will make your own numbers and your own statistics, not live or die or fight by anyone else's numbers." He told us to make plans, get things in order--and then set those things aside and LIVE and do battle for as long as we can.
That, in a sort of longish nutshell, is how we got here.
I couldn't end this post without thanking family, and friends and people I've never met, who have reached out to support us, love us and pray for us through this so far.
It is the most beautiful thing in the hideous ugliness of all of this.
Kyle and I lay talking the other day (he lays in bed a lot because he's tired...also SO different than how I've ever seen him)...but we lay talking we said, "There is a tangible feeling in the universe around us. You can almost reach out and touch it right now."
You can call it love, or the spirit, or the force or karma or whatever word you want to choose...they are probably ALL right anyway...but it is real. It is circling around us and holding us up in the darkest moments. It gives us peace and hope and strength when it seemed as if there were none of things left to find. It gives us courage to move forward and step through each new day.
Love is real, it's all we have anyway. There are so many things in this life that don't matter anyway. Things we worry about and fight about and fret about. So many of them so silly.
This, cancer, removes ALL of those things from your life.
Terminal, removes it one step farther. (further?)
So we would say to you dear readers, the thing I said when my husband was diagnosed....
"This is what I've got for today.... just LOVE the ones you love, hold them tightly, forgive quickly, remember remember remember what's REALLY important in life. Some things that we spend so much time worrying about do NOT matter at all. It's all about love."
It's all about love....that's what I STILL have for today!
Love,
Dorien & Kyle
Dorien, I am so glad you started this blog to keep those who care and love you informed. I am sure it is hard, but also helpful when working through this trial. I have already found that your families challenges and testimony have changed me. I find myself thinking about you and making better decisions as I think, "What is really important right in this moment?" You both will change lives as you continue to share your spirits with us. I can sense a strong fight in you both and I hope you continue to feel strengthened and comforted. You are in my prayers! Cancer is so totally stupid! I hate it! Beat it's butt, Kyle!
ReplyDeleteI am also SO glad you started this blog.
ReplyDeleteDorien, one of the things I have always loved and admired about you is your extreme sensitivity to the spirit. You have this internal sense about you that not all people have, and always seem to know the right thing to say. I have always admired you and your family...and feel blessed that I have been able to re-connect with you again.
You have so many people who love you guys...and people who are there for you and will do whatever you need to help right now. How beautiful that it is so tangible to you! I am also here...and am available to help, or listen, or bring you a diet coke whenever your heart desires. I love you guys, and you are in my thoughts and prayers every single day.