Monday, October 6, 2014

October 6, 2014

Two years ago, to the day, I finished my treatments for a cancerous tumor in my sinuses.  
Two years ago I started the recovery process.
July 16th of that year I started the longest 2 1/2 months of my life.
6 weeks ago I was released from regular MRIs.  I am cancer free.

I am having a hard time writing this post.  I am hoping it is the last cancer related-to-me post I will ever make.
I want to write this as a reminder of those things that are not the same as they used to be.  I don't want to come off as whiny, since some things have changed for the worse, but I would like this to be an "I know where she's coming from" moment to someone out there who goes through something like this.
No one goes through any sort of cancer and treatment without forever feeling a little haunting fear.  
Thankfully, that fear isn't always there.  Life is busy enough to crowd it out most of the time.

There are changes in my body that make it so I never will forget I had cancer.  There are things I have to push out of my mind and not think about because it makes me think about what I don't have instead of what I do.

My sinus tumor was spread throughout the sinus cavity in my forehead and down into one beside my nose and under one eye. In that space behind the forehead is the olfactory nerve, the nerve that tells the brain what things smell like.  The tumor was there so the nerve that does the smelling is gone. I can't smell anymore, nothing, and it isn't going to come back.  Many people don't realize that with the sense of smell gone, much of the sense of taste is gone, too.  I was told that I would have just the basic tastes, sour, salt, sweet, bitter, and umami.

Umami /ˈmɑːmi/, a savory taste,is one of the five basic tastes,
(together with sweet, sour, bitter and salty). 
A loan word from the Japanese, umami can be translated as "pleasant, savory taste." This particular writing
was chosen by Professor Kikunae Ikeda from umai "delicious" and mi "taste."
People taste umami through receptors for glutamate, commonly found in its salt form as the food additive '
monosodium glutamate (MSG). For that reason, scientists consider umami to be distinct from saltiness.

However, I don't have any sweet taste, except a little something in honey and fruit., that isn't really sweet, just different.

Because my tumor was large and very aggressive, I was given very aggressive treatment, two kinds of chemotherapy and radiation, all at the same time.  Both radiation and chemo make enough changes in the body that the side effects last a very long time.  They told me a year to 18 months.  Then they told me two years.  Some of the side effects are permanent. Some I didn't expect.  Some the doctors didn't expect.
I received the maximum dosages of radiation to the front part of my brain, my sinus area and my neck, to make sure that no rogue cancer cells escaped into my lymph system.  Radiation to the mouth kills the salivary glands and once they are dead, they don't come back so I drink water all the time to compensate for the resulting dry mouth and to facilitate swallowing. I have water handy at home and carry a water bottle out of the house.  The radiation produced scar tissue in my throat, essentially making it smaller and making swallowing more difficult.
Food management is a major issue in my life today, and will probably always be.  Chewing is harder because of loss of muscle strength and lack of the saliva that breaks down food as I chew, Scar tissue affects how wide I can open my mouth.  My tongue isn't as effective for the same reasons as above for controlling the food in my mouth.
I can eat many things, but they need to be wet, or able to get wet.  Some things I can use water to help get things out of my mouth and into the esophagus.  Some things I would rather avoid.
Spicy foods, citrus, and vinegar still burn my mouth which is rather like starting over two years ago with brand new skin in there.  I am hoping my mouth will toughen up yet over time.
Food isn't nearly as enjoyable as it was.  For years I wanted my life to live by the rule,
"eat to live, not live to eat".  I have achieved that goal.  I don't eat because I enjoy the taste, I eat because I want to live.
That used to be a problem, and when my metabolism went down, my weight went up.  I am thinner now, not because of any great will power or decisions on my part, but because eating is hard for me.
Some days it would be easier not to eat at all, but thankfully I get hungry, and I am also coming to realize that without food, I have no energy and get depressed.

Another side effect that I am having a hard time coming to terms with is my lack of energy.  I can't do as much as I used to and after two years of waiting, this may be all I get.  Thankfully, I can do most of my own work and some extra, but I can't get everything done I used to do.  Somethings just have to wait.  It's like I aged 20 years in that 2 1/2 months.  Most people get 20 years to do that.

One totally unexpected side effect was the affect that radiation had on my hearing.  My Eustachian tubes do not work properly since I had radiation and caused fluid buildup behind my ear drums resulting in hearing loss.  To counteract that I had tubes put in my eardrums, which eventually fell out leaving holes in the ear drums which also cause hearing loss.  So, I hear about half as well as I used to.  When I first went to the ear doctor about the hearing loss, he says very casually, "oh, that can happen after radiation."
I don't know whether it is better to know these things before treatment or after.
Most of me thinks after since I had enough to face just getting through treatment and it is easier to be thankful afterwards for what is left.

Yes, I've lost of a lot of things.  My smell, most of my taste, and a good share of my hearing.
My voice has changed and I can't sing decently anymore.  
I've lost my previous energy, and some of my brain power.
I've lost weight.  
I have not lost my life, my sight, my cheerfulness and my enjoyment of life.  
I have gained a greater appreciation for my family, my friends, and my life.  
My life is different from what it was.  
It will always be different.  
In some ways, I look ahead with trepidation.  What will old age be like for someone like me?
That, and knowing that few people really understand what life is like for me are the hardest things for me to face.  
You know, everyone has something to face, and I don't know what they are facing either.  It is hard to understand just what someone else is going through unless you have walked in their shoes.  
Yes, life could be better, but it could also be so much worse.  
And I am thankful for everything I have.

Here are a few links that mark the changes.
During treatment.

One year.



Renee said...

Since I'm not eloquent...I'm just going to put it simply. This post touched me deeply ... you are remarkable and I am thankful for you and your perspective!

The Chairman's Wife said...

This was a very touching post. I'm very glad you shared this very long and difficult journey with us readers. One thing yuu should know is that you have been a beautiful inspiration in having a deep Faith and showing a right Spirit through a deep valley. Fair are the prospects all ahead...

Anita said...

I, too, was very touched by your post.
I wonder if everyone thinks, quietly to themselves, when will I walk that path? And which one will it be? I do, at any rate.
Thanks for sharing this part, too. Xoxo

Bonita Sue said...

Well put, and every single word is true. It's the way it is. I'm honored to have shared in some portions of your journey, and we are glad for the price you have paid that you can still be with us. May all who meet you reflect your hope and extend their kindness.

Darcie said...

What an absolutely beautiful post! Just as beautiful as the lady and the heart of the lady that wrote it! Thank you for sharing your experience with just never know when your words will be just what someone needs to hear.