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,

John

Monday, October 20, 2008

Coming home from Hospital

First off, let me thank all of you who supported, thought of and prayed for me. It really helps way more than you all can realize. I am coming home this wed. for sure.

It has been a really rough ride. It totally sucked, but I am getting through it all. I read all the emails my sister brought and it really lifted me up when I was really fealing down.

My voice box was saved so I will have a voice. Oral cancer may have kicked my butt a time or two. But I am planning to win the war.

Till next time,

John

Saturday, October 18, 2008

John's Update

E-mail from John's sister, Debbie, can be found at this link on my blog: 


www.assertivepatient.com/2008/10/johns-update.html

You can leave comments on that post which Debbie will print out and take to John, or you can e-mail me and I can forward your e-mail to Debbie. Send to: jeanne.sather@gmail.com

Comments left on John's blog will be held until he is able to get back online. 

Thanks, everyone for the messages of love and concern, and for the financial donations to help John pay for his care. 






Thursday, October 16, 2008

Good News From John

Hi Folks, John's friend Jeanne here, trying to figure out how to get a post up on his blog. 


For today's update, please go to my blog, where I've posted a message from Debbie, John's little sister. Look in the right column, and you'll see a post called Good News From John.

Thanks,



Jeanne
www.assertivepatient.com

Thursday, October 2, 2008

Oral Cancer Returns

I have just finished my Chemotherapy and Radiation treatments on June 26 of this year. In August I noticed that it was starting to hurt again. After having my insurance canceled because of not being able to pay the cobra and attempting to get Medicaid, My Sister found an ENT and a hospital to give me treatments on a Medicaid pending basis. The ENT thinks the oral cancer is on the whole left side of the tongue and quickly moving onto the right side. It is also working on the floor of the mouth and a small portion of the Jaw bone and the voice box. We have done a pet scan to see if it has spread anywhere else. Results not in as yet.


This news has devastated my family and I. For those of you who do not know, treament is no picnic. And now...so soon, it is back. Or it never left, will never know that one for sure. This may require taking the whole tongue and voice box and a small portion of the lower jaw bone.
I will have a stoma forever. Never be able to smell, taste, eat normally ever again. BUT, I can live. They say you can live a LONG time like that. It is just a matter of accepting the new norm.

I know reading this makes me sound like I am the brave little trooper. I am no such thing. I will get past this but I am terrified for now. It would not be normal if I were not. I will keep you all posted as to the news soming this Friday. It may take me a while to get this to you, But I will get back to you all.

Monday October 6, 2008 Update:

The Doctor said that the tongue lit up in the pet scan and cancer is gong into the voice box. They also seen a tumor in th upper right lung. Going to have a bronchoscopy this wed am to see if it is cancer. Maybe will need radiation for the lung and then the tongue and voice box must be taken out along with a small piece of lower jaw bone on the left side. Will be a 7-10 day stay in the hospital.