Wednesday, October 22, 2008

tongue cancer, jaw cancer, lymph node cancer,Voice box cancer

Well, I am finally back home from the hospital. When I first got oral cancer I never thought this would have happened to me. It is one of the cancer stories you hear about but never get or hope you never get. The kind of story when you read it you think......That poor sun of a gun!

I started off having my left tonsil removed because of cancer. Thought that would be that. Then they say, NOOOO, You had tonsil cancer and now you have cancer of the tongue. So I think about surgery to have part of the tongue removed and think that radiation would be a better option. I like my tongue you know. Years as a cook, chef and manager taught me to love my food. That option did not work for me. Two months later, I find out the cancer is back. Now It had taken over the tongue enough that they dare not try to save any of it. And it also has gone into lymph nodes again, the floor of my mouth and the left lower jaw bone. All of which was removed. They almost took my voice box but God gave me a miracle and cured the cancer from that. So now I can kind of tal with a a limited vocabulary but it is better than not talking at all. living with a trach is no picnic either but again, that is better than a permanent stoma which was the original plan. And the trach comes out in about 3-4 weeks. So that is good news as well.

To clearify allow me to explain the different proceedures.

"Trachea" is the name of that portion of the airway in your neck leading to
the right and left mainstem bronchi; also called "windpipe"

"Tracheotomy" and "tracheostomy" are often used interchangeably, and you'll
find varying definitions. In general, "tracheotomy" using refers to the surgical procedure of making an opening in the trachea and "tracheostomy" refers to the semipermanent or permanent opening. a permanent opening is also called a stoma.

The cancer pain. It is all gone. I now have replaced that with a VERY sore neck that keeps swelling in the nape of the neck. It alone can at times cause bad pain. I tend to get migraines now for some reason. And of I have a limited range of motion with the neck and the left arm. I guess it will all come back. I am doing physical therapy for it now. I hate the trachea. It is not comfortable for me and it makes me feel like there is mucosa all the time that I can not get out. On occasion it comes up and is an awful mess.

I notice a few big time differences now though. I smell but NOTHING smells the same at all. Not even close. I am swollen all over my face and chest. They took my right pec muscle to cover the hole where the tongue was. They could have at least got my nipples even again.
I will never eat by mouth again. My meals come from a can and are delivered via a pump straight into a tube inserted into my belly. Life is different now. I now have a NEW NORMAL. what once was is now only a memory. But I have one thing I though I was going to loose. MY LIFE. SO when you balance the whole thing out, it is not so bad. OH I long for the day when I have no swelling and soreness or pain from surgery. I also long for the range of motion to all come back to my neck and left arm. But it will some back.

I have been sliced, diced, poisoned, microwaved and filleted like a fish. But cancer has not won the war. I plan on seeing my grandchildren when the time comes. A grandpa with a little deformed face and a funny way to talk is better than no Grandpa at all. Besides, the love will be the same if not more so. These type of things tend to teach you not to take anything for granted.

It will be weeks to recuperate from the surgery. It will be months of therapy to learn things once again. The Doctor says, I will never be able to perform my job ever again. I will have to survive off disability forever I guess. But, I will continue to exist and be used however God has intended.

Till next time,



Wendy S. Harpham, MD said...

Dear John,
You are what I call a "Healthy Survivor," namely, a cancer patient who gets good care and lives as fully as possible.

You eloquently describe becoming "other." And you show everyone that the essence of who we are remains the same.

Although you may have tough days ahead as you adjust to your new normal, you clearly have hope of enjoying the blessings of life while dealing with its hardships.

Keep in mind that survivors who do well in the longrun often go through rough spots associated with temporary loss of optimism or hope. So having a moment, an hour, a day, or even a week of feeling blue does NOT mean you've given up hope. It means you are human, grieving and adjusting to losses, so that you can recapture joy in your life after cancer.

In fact, I just talked about this in a recent blog post:

Wishing you strength - physical, emotional and spiritual - as you recover from your surgery.

With hope, Wendy

Marie said...

Wow. I read it. I am humbled, speechless. I keep you all in my prayers.
Much love

Christine B from OCF said...

John you are an inspiration. After everything you have endured, you are able to look at things with a wonderful perspective of what truly is most imporant in life. Many people should look to you for such optimism. Keep up the good work :)

Anonymous said...

I am sorry your life path is so damn rocky and uneven. We've all got rough spots, yours seem a little too unfair though. Optimism and hope will help smooth out those rough spots for you. I finished my radiation March 28th for tongue cancer (after surgery), and every lump and bump and twinge of sensation spikes my blood pressure and anxiety level. I pray you will be comforted by your friends, family and medical staff and know that people care... God bless and give you a speedy and healthy recovery.