Sunday, July 10, 2016

Donna's Brave Heart. Blog #404




Donna's cancer doctor here in Spokane told me she was doing a series of writings called Brave Hearts and would like it if I contributed writing our story, with a photograph. It's to cheer cancer patients to keep fighting, as long and hard as they can.
I don't know if our journey will help in that effect, but an honest journey is better than no journey at all. 
Here is what I wrote for Donna's doctor, and some of it is in past blogs but any chance to blog is good with me.

Donna and I met in college. She would type my papers for me and I fell in love with her that first
night we dated. After college, we drifted into the casino business for the next 37 years.

Donna’s father died when she was 12 and her mother died when Donna was 16, so Donna always said
she would be the first to go but hoped she would live longer than either parent…she did by 13 years.

Donna had been told to have her blood work check in 2013 but she put it off until Feb. 2014. She was
referred to Dr. Gopaluni who took a biopsy and said it might take a week for the results. I think it was three days later that the doctor called and informed Donna of the results, Donna's face turned white and immediately started crying. I took the phone and arranged with the doctor to come into Spokane for treatment.
Donna had AML, Acute Myeloid Leukemia, the same blood cancer that killed her mother at the young age
of 48.

What could we do? Where do we go? What will happen if we do nothing? All these questions were running around in, mostly my head, because Donna was still in shock of it all.
She would only be in Spokane for a week or so for the start of chemo. That first week I drove back and forth every day because we have two house dogs to take care for, but after one week turned into two weeks I moved temporarily to Spokane with the dogs. I lived in our RV in the hospitals parking lot.
Donna had a rough go with the chemo treatment which also starting giving her congestive heart failure. I think she was in the Spokane hospital 7 weeks the first time. 

After her release and with medication for the heart failure starting to work, Donna was on the mend. A second bone biopsy weeks later confirmed that she still had leukemia and would need a bone marrow transplant and more chemo.
This transplant could only be done in Seattle if they accepted her. At first, they balked at trying because
of the heart failure, (now I wish they stuck to their guns) but as summer wore on she became stronger and was finally accepted by Seattle
Cancer Care Alliance…after we come up with $100,000 our insurance would not cover for the 
gathering of the bone marrow.

Dr. Gopaluni was very much in favor of us going to Seattle so I started to take out a first on our house since we owned it free and clear.
Donna felt bad about the bills, heck her medication were running $7,000 to $11,000 a month and now the SCCA wanted a hundred grand up front? Donna did complain to Dr. Gopaluni that maybe we shouldn’t go to Seattle? Two days later our insurance company, who would only cover $20,000 of the expected $130,000 just to harvest the bone
marrow, all of a sudden changed their mind and would cover it, %100…not sure what the doctor told them but I’m very grateful her help.

Seattle was a nightmare. We moved the RV 20 miles outside the city and prepared for the transplant. We were told a typical stay after transplant was 5 to 21 days at the most, but Donna has never fit the mold of a "typical" girl…Donna never left the hospital for the next 4 1/2 months.
Everything that could go wrong, did! Donna suffered so badly from not just the chemo and radiation, but from the massive amounts of medication she was taking. IV’s were strung the whole time, she went in D-fib twice, on a ventilator twice, had something called “press” that made her psychotic and had an untold amount of blood transfusions. When she was finally released in Feb 2015 she was a very broken woman. SCCA upon her release congratulated Donna on being free from cancer, but said very little about her present condition which in my mind was horrible. She was still hooked up to IV’s, to which
I gave her the meds and fluids she needed but Donna was now on more medication than before.
She got her much wanted RV ride back to the house in Colville, where neighbors had hung signs and balloons welcoming her home. We were hopeful.

I think Donna lasted 3 or 4 days at home before we went to Spokane for a normal appointment with Dr. Gopaluni. Donna would get upset with me because I found it hard to say Dr. Gopaluni and referred to her as Dr. Guacamole. (sorry Doc)
Well, Donna never left the hospital alive after that appointment. Dr. Gopaluni did not like what she saw and had her admitted immediately. I ran back and forth to Spokane wondering if I should bring the RV down when her doctor called to tell me that there was nothing they could do for Donna in Spokane…they will have to fly her on a medical jet back to the University of Washington, where Donna spent the previous 4 1/2 months. Our doctor again said, don’t worry about the cost…wow.

As soon as Donna flew out, I drove home to get the RV ready for Seattle again as I had just unloaded it when we got back home. A Doctor I’d never heard of before called me and asked if I knew about her condition. Yes, I replied, I’m getting the RV prepared to drive back to Seattle now and I'll be there in two days. “Mr. Zwart, I can’t guarantee that much time” I pulled over as I was
on the way to town to reload the RV. I’ve never been so upset or floored like that moment and just typing this brings it all back to the forefront. What they did not understand was that Donna was my Rock of Gibraltar, my mentor, and my soul mate
before that became a common word or phrase.

I rushed to Seattle, and it’s amazing that I even got there because it’s really hard to drive with that damn water in your eye thing!
Typical Donna, when I entered an all too familiar room (same floor, same ICU) and Donna perked up and said “hey, did you hear,
I’m dying”!

We spent the next four days talking about our travels, our son, our grandkids and what a great life we had together. The doctors had already told me there was no coming back from this and I said that if that is the case then how about plugging all this crap that she is hooked up to.
Ah, the room was so much quieter without all the lights and beeping noise. Our son Jason came up and my sister Teri flew
in from Denver to give us some support.
Donna drifted into a coma on the last day and below is what I wrote in a letter about that day.

Would Donna have done it again? No, it was a horrible 13 months for her but when they tell you if you do nothing, it’s 100% you’ll die in months but there is a chance if we transplant. That damn “carrot on the stick” was appealing but in retrospect, it was an empty promise for someone that was not that healthy at the time.

Costs were another issue. Luckily, we landed in Washington, a progressive Obama Care state. Donna’s bills hit $2,300,000 million
before her death…was it worth it? She would say no because of the quality of that last year sucked big time, me being selfish…wanted
one more month, one more day and even one more hour with her.
Here is what I wrote of that last night.

That last night that we were together at the hospital I remember talking to you for hours even though you were in a coma and I was blabbing away talking about nothing and all of a sudden you turned your head with open eyes and looked at me I knew immediately that your body just relaxed and your eyelids opened. It would be nice to think that you snuck one last peek at me before you went but medically they'd think I was nuts. I never felt so alone in my life at that moment even though I had family in the room with me. 
I'm going to try to keep track of things you've missed, who knows whether you can actually get messages from beyond but here goes. 
You had a wonderful memorial at the house with all the neighbors. Paul made a beautiful church bench with a plaque on it "To Donna from the neighborhood". Denny, Laura, and Ashley were there, all the neighbors and Duane surprised me by flying up for the memorial. Lori catered it. 
Next came the memorial in Las Vegas. Your girlfriends really outdid themselves. They had it all organized for me and it was attended by many people that we both knew.  All your coworkers, lots of your old bosses and all my family with your sister Trish. We had a good celebration for you, honey. 
After Vegas, I did what you asked me to do.  I went home picked up the dogs and we went down to see your granddaughter Kendra Moon born. She is so beautiful and a day early too! Two days later Riley and I went to see Jessica get married. It was a beautiful ceremony I sure wish you could have seen it, very fancy. After that the dogs I went home. 
You are still here with me and there is no "till death do us apart", even in death you are my one and only…I love you. 

In 2007 I had my own bout with cancer and thought I might not be here, so I typed this song I love from Leon Russell titled 
A song for You and put it in the safe deposit box to be opened after I go…well, things didn’t work out like I imagined.  


A Song For You 
Written by Leon Russell  (for Donna)

I've been so many places in my life and time
I've sung a lot of songs, made some bad rhymes
I've acted out my life in stages
With ten thousand people watching
But we're alone now and I'm singing this song for you

I know your image of me is what I hope to be
I treated you unkindly, darling can't you see
There's no one more important to me
Darling can't you see through me
Cause we're alone now and I'm singing this song for you

You taught me precious secrets of the truth withholding nothing
You came out in front and I was hiding, 
But now I'm so much better, and if my words don't come together
Listen to the melody 'cause my love is in there hiding

But I love you in a place where there's no space or time
I love you for my life 'cause you're a friend of mine
And when my life is over
Remember when we were together
We were alone and I was singing this song for you, 

I... love you in a place
Where there's no space or time
And I love you, love you for my life
'Cause you are a friend of mine
When my life, when my life is over
Remember when we were together 
We were alone and I was singing this song for you

We were alone now, and I was singing this song for you
We were alone and I was singing this song, Singing this song, for you, 


I am really inadequate at writing and this song tells most all of how I feel, although I don’t think a song or poem has been written that encompasses it all.
You’ve been my friend and most importantly my mentor thru life. You and only you have made me the person I was. I love and cherish you so much and want nothing but for your happiness after reading this. Listen to this song…have a good cry and then get on with your life. Our son needs his mother to be strong and I know you will be.
Love you so dearly, Tom
11/16/2007


And that Dr. Gopaluni is my story, I hope it helps.
After reading what I wrote for Donna's doctor, I'm not sure it will be received with much encouragement.















2 comments:

Anonymous said...

Very well said Tom, not a day goes by when we dont think of Donna.
Joe

Anonymous said...

I randomly found this. Beautiful story. Thank you for sharing.