Hello all,
I've waited 3 years 4 months too long to reach out.
I guess it's fitting that I choose this day, Thanksgiving, to introduce myself.
An especially hard day for one who cannot eat.
My name is Cheryl, and my husband is Doug. On 8/31/10 my husband was diagnosed with Stage 4 HPV cancer of the tonsil. We were told by our oncologist that this form of cancer had a "good" cure rate. He said it would be hell, but we had hopes it was something we would conquer.
The heartache of the news, well, each of us has been there, you know how it goes,but NOTHING in the world could of prepared us for the nightmare to come., I wished someone had tried.

Before I go into more detail on that, I feel a little back round on us my help.
Doug started this fight as a big (6'5") strong man.
The kind of man that made heads turn when he walked into a room. He owned his own business (sales, which means talking) and was as healthy a person I had ever known.
We had been married 13 years at diagnosis and I swear the man never took an aspirin or seen a doctor in all of those years.He worked out every day, like the mailman, nothing stopped my husband from a workout.
We traveled out of the country often, we ate out, we had friends, and we had laughter.
Today, I feel so much of that gone.

On to cancer.
We started like many, radiation, chemo, surgery.
Then there was the two times he almost died due to the reaction to Ethyol shots (to save his saliva glands).
Yes, it took two times the doctors telling me they might not bring him back this time before they figured the problem out.
We had the surgeries for the med port and the G-Tube.
Then the big surgery that took his tonsil and the secondary large tumor that was growing in his neck; little did I know it was just the beginning of taking my husband piece by piece.
We went through the burning of the skin, the loss of hair and the vomiting out of control, but it was all worth it because we "thought" we had beaten the ugly beast.
Our med team said if we made it the first year clean, we would be on the road to recovery we made it 11 months 2 weeks before our world feel apart once more.
I will try to summarize what followed.
Surgery to remove 30% of his tongue. To tell you it was so awful and painful, it scared us to death. It introduced us to the tracheotomy and ventilator. I didn't leave his side for 10 days. Mind you on some of those evenings when he was chocking so badly on the vent, I just couldn't take my head from beneath the covers. I felt like a coward, but it was so awful watching him suffer.
We were told the were clean margins, he had all the radiation a chemo he could have, once again they "thought" they got it all.
Painfully, heart rippingly so- they were wrong once again.
The awful cancer struck back in less then two weeks. To this day he still has a trach.
The sent us on to a "bigger, better" hospital where they said he probably wasn't HPV just the harder squamous.
He underwent another 16 hour surgery. This time they took 98% of his tongue, replaced it with fat from his belly, the only place left on his withering body that had any fat left at all. They also took pieces of bone,lymph nodes galore and some teeth.
I will never again hear the sweet sexy tone of my husbands voice.
The recovery from this surgery made the others look like a piece of cake.
Once again the words- "We got clean margins, we got it all". Once again they were WRONG!!!!.
We would drive 130 miles three days a week during recovery, each time the medical team telling us all looked good, until it didn't.
The most horrible words you can hear is there's nothing left to do, your husband is going to die.
The wrenching pain on the drive home that day nearly put me to the ground.
They sent us back to our original hospital, for what they call Palliative Care. They gave him 6 months to a year to live. It's been a year and 5 months since that diagnosis of death, we're still here.

So whats the problem?
In 3 years 3 months I have been his only caregiver. He does not take advantage of any help or happenings going on for cancer patients.
He cannot and will never eat again. His Trismus is so bad he can only open his mouth less then a 16th of an inch.
He can talk but just barely, you really have to pay attention.
He hates the new him and has shut most everyone out. I can only leave him for short burst of time, and if I ask someone to come an sit with him he only cancels, getting angry saying he'll be fine on his own.
The treatment side effects have fried his barrier receptors that regulate blood pressure, he has fallen and broken his back TWICE and has fallen so hard he has needed many stitches. In short I have found my husband 4 times passed out lying in a puddle of blood, yet I'm not to say a word when he tries to carry heavy stuff up and down stairs. In his words I need to "let him live".
Does anyone out there find that as hard to do as I?
I have been by his side through every last terrible bit of it. I find it hard just to let him go, knowing full well this could possibly be his last fall?
Did I mention the loneliness and isolation?
It's been two years since I've been touched, kissed or caressed. I know he feels ugly and disgusting and I hurt for him, but I hurt for myself too.
I miss life, is that a horrible thing to say? It feels it, and the guilt gets to me.

Many may suggest reaching out asking for help, and in some ways I have. But today is really my biggest step.
It's hard when people don't understand what type of man my husband is.
I see so many that rally around friends, family, medical staff, support meetings. Many finding laughter and love in spite of the ugly cancer. Nope that's not my husband.
Since he has been diagnosed not a single family member has come to our house. He told them in the beginning he didn't want people to see him that way etc..., and they bought it! In all this time they never said, screw what he wants, we're coming. I just don't understand.
He absolutely hates asking for help and would rather see me work my tail off keeping the house together or stay home day after day night after night being just a caregiver. It's not that he's a bad man, it's just the way he is. Not a single person asked us to join them for Thanksgiving. Doug can't eat, and he hates to be seen, so whats the point right?
Our big day out is chemo, every Thursday once a week for well over a year now, he's had so many I've lost count. They say it will continue until the cancer wins the battle.
I am lonely, I am scared, and my anger gets me every time I think of what was.
With so little time I wish I could somehow bring us back together as husband and wife, friends and laughter, but he's fought it so much I tend to eat my anger and let the days continue as they are.
I hope this wasn't to long winded, and I hope that it makes some sense. So much going trough heart and mind, it's hard to put it proper order.
Thanks for letting me introduce myself.