Saturday, January 24, 2009

I smell the sickness

This is a very troubling time for me. Just 2 years ago, my darling husband of 25 years, Scott, was dying of pancreatic cancer. He developed jaundice in September, just a week after we climbed Wheeler Peak. The doctor originally thought he had a Hepatitis B infection. However, when he showed no signs of improvement, she ordered an ultrasound and a MRI. Tumors were found in his pancreas and also his liver. They were inoperable but he still had surgery. This was to place a stent to relieve the bilirubin build up so that his jaundice would clear up. This was in October. The jaundice did not go away, however, and by mid November, he was admitted to the hospital with a severe infection from the stent. They performed a second surgery to replace the stent and he began chemotherapy during the week he was hospitalized. He was released the day before Thanksgiving. He continued chemo treatments weekly with no major ill effects, probably because he felt so poorly anyway. His legs swelled gargantuan with edema. Also, he could not eat. He was offered a miracle drug, Tarceva, that could possibly prolong his life. He agreed to take it. Because he chose treatment, he could not get hospice care.

We did have a medical insurance plan but it was major medical with a high deductible. The tests were not covered because they were considered out of network. The doctor we used was out of network. The Tarceva drug would be covered fully once the prescriptions deductible was met but we had to pay the first month. This drug cost $3,000 a month!! He gave up his job in November and continued the chemo treatments, his condition steadily worsening. I didn't think he would last to Christmas, but he did.

Friends and coworkers would come and visit with him and were shocked to see the change in him. He looked like a Prisoner of War because his face was so skeletal. He looked so old too, much older than the fifty years he was! He got to where he could barely walk and when I'd take him to the clinic for chemo I'd have to get him a wheelchair. They had to continuously poke at his arms to find a vein to use for the IV. Most times it took 2 - 3 nurses and 5 or 6 sticks with the needle to get the IV working.

Once, at home, I helped him to the bathroom and he was sitting on the vanity to catch his breath and he passed out, backwards, hitting his head on the mirror and sliding to the floor in my arms. I was terrified. He recovered unharmed, and my son helped me get him back to his chair. From then on, it took two of us to walk him to the bathroom. My husband was 6'1" and 180 pounds.

One of the hardest things for me was that I was unable to get close to him. He sat in his recliner and I felt so isolated from him. I prayed for him to get better. I prayed for his relief from pain. At first, he was angry and in denial, but eventually he accepted his fate and made his peace with the Lord. He always went to church with me previously, but I think it was more to humor me than for his own soul. Now, he was truly converted.

The third time he saw the Oncologist in the office was to decide whether to continue the chemo and Tarceva. After two series of treatments, the doctor decided there was no worthy improvement, so Scott was sent home with no idea of how long he had left to live. This was early January. Hospice was called and, for two weeks, it felt like Christmas. Every day we got deliveries, a hospital bed, wheelchair, oxygen, special toilet...Finally he was getting some relief. He even got a sponge bath!

All this time, he took minimal painkillers because, although he had morphine available, he didn't like feeling out of control.

In 2006, My Chemical Romance came out with their new album, Welcome to the Black Parade. It is about a cancer patient. I didn't listen to it for a long time, but when I did, this song, Famous Last Words, meant a lot to me.
Many times I would find Scott sleeping, with his mouth slightly open, and worry if he was okay.

Here's the lyrics to the song:
Now I know, That I can't make you stay.
But where's your heart? But where's your heart? But where's your,
And I know. There's nothing I can say.
To change that part.To change that part.To change.
So many, bright lights to cast a shadow, But can I speak?
Well is it hard understanding, I'm incomplete?
A life that's so demanding, I get so weak.
A love that's so demanding, I cannot speak.
I am not afraid to keep on living,
I am not afraid to walk this world alone
Honey, if you stay you'll be forgiven;
Nothing you can say can stop me going home.
Can you see my eyes are shining bright?
'Cause I'm out here, on the other side,
Of a jet black hotel mirror,
And love so weak.
Is it hard understanding I'm incomplete?
A love that's so demanding, I get so weak.
I am not afraid to keep on living,
I am not afraid to walk this world alone
Honey, if you stay you'll be forgiven;
Nothing you can say can stop me going home.
I am not afraid to keep on living,
I am not afraid to walk this world alone
Honey, if you stay you'll be forgiven;
Nothing you can say can stop me going home.
These bright lights have always blinded me.
These bright lights have always blinded me.
I say, I see you lying next to me,
With words I thought I'd never speak,
Awake and unafraid, Asleep or dead?
'Cause I see you lying next to me, (How can I see, I see you lyin')
With words I thought I'd never speak(How can I see, I see you lyin')
Awake and unafraid, (How can I see, I see you lyin')
Asleep or dead?
'Cause I see you lying next to me,
With words I thought I'd never speak
Awake and unafraid,
Asleep or dead?
'Cause I see you lying next to me,
With words I thought I'd never speak
Awake and unafraid, Asleep, or dead?
I am not afraid to keep on living,
I am not afraid to walk this world alone(Or dead)
Honey, if you stay you'll be forgiven;
Nothing you can say can stop me going home(Or dead)
I am not afraid to keep on living,
I am not afraid to walk this world alone(Or dead)
Honey, if you stay you'll be forgiven;
Nothing you can say can stop me going home.(Or dead)
I am not afraid to keep on living,
I am not afraid to walk this world alone(Or dead)
Honey, if you stay you'll be forgiven;
Nothing you can say can stop me going home


I smell the sickness - lyrics: Prisoner of Love, artist: Tin Machine, album Tin Machine

10 comments:

Rising Rainbow said...

I'm sorry that you had to go through this. Cancer is so tough. It claims the whole family as its victims. There is nothing harder than watching someone you love die.

Dan and Betty Cooksey said...

Val, that brought tears to my eyes and heart. The one joy in the midst of your story is his coming to truly know the Lord.

I suspect telling your story was hard and some of the same pain may have come back. But, thank you for sharing it with us. Maybe we can help carry a little of your burden, if you'll let us.

Warmest regards,

Dan

Fantastyk Voyager said...

Yes, there hasn't been a day gone by that I don't think of him and miss him. He was my soul mate, my life's partner, and he was taken from me. We had 25 fabulous years together and then I had to helplessly watch him starve to death.

Laughing Orca Ranch said...

I'm so sorry my dear friend. This must be a terrible time of year for you. It will always remind you of Scott, but as time goes on, the sharp edges will soften just a bit.

John's father died on Halloween and because of that, for years he got depressed on Halloween and refused to celebrate the holiday. Then we had kids, and they helped soften those aching memories, and now, even though he is still reminded of his Dad every Halloween, he has a reason to find a little joy in the holiday.

Those lyrics are really meaningful and thought provoking poetry.

By the way, it was very nice seeing you today. Thanks for visiting, and bringing over those yummy brownies and croissants. :)

((HUGS))
~Lisa

DayPhoto said...

Oh, Honey, my heart breaks as I read this. My heart breaks for you and for the horrible struggle he had to go through. Sometimes I don't understand why death has to come in cruel ways.

I lost my sister, my grandmother, my Daddy and my Mommma all in one year. It was a long, long year! But....I do believe there is a much better world they go to and that pain does not exisit there.

Linda
http://coloradofarmlife.wordpress.com/

Melanie said...

Val-
Thank you for sharing this piece of your life with us. I am so sorry that you, your husband, and your family had to go through that, and I am sorry that he had to die.

Isn't hospice wonderful?? I worked with hospice a lot as a nurse, and it is something that I am considering as a social worker.

I am glad that your husband had enough time to get past the anger part of his disease. People can find such peace in those final months, days, hours, minutes...or they can continue to be angry and bitter.
(The lyrics to that song are beautiful!)

My thoughts are with you tonight...

The Wades said...

Val, tears here.

I am so so sorry for your loss. How terrible that all had to be. You lived the nightmare I fear. Biggest hugs and kisses. I will pray for your healing heart.

Michelle

Andrea said...

Sending you big (((HUGS))). Cancer is so horrible. When I first met my husband his mother was just diagnosed with stage 4 breast caner. She fought it for two years. She would get better for a month and then tumors would come back. She ended up getting tumors in her lungs, and she just coudln't breath. It was so sad. So sad. My husband was a "Momma's Boy". He doesn't really talk about it much, and I know he still hurts, but like Lisa said, the sharp edges start to come off. Caner is horrible. I am so sorry you had to go through that. IT's tough, but it does get better. My mother in law passed away about four years ago. We are just now able to really talk about it.

My heart goes out to you, I understand, I really really do.

allhorsestuff said...

Oh, you have such a lovely heart Val. I am very saddened by your horrific loss of Your love, your husband. Thanks you for sharing this part of your life with us and please know that I am praying for you
KK

Fantastyk Voyager said...

Thanks for all your kind thoughts. It warms my heart to know there are friends around.