Saturday, February 17, 2018

sucessful check up

I had a good check up at UCLA, my leg is healing. The skin graft developed a 1" by 4" area that hyper granulated. So while most of the skin graft is already healed, this just took longer. There is less pain when standing, which is a good thing. I still walk with a limp, but have started to take small steps because the limping is making my hip hurt too much. It's much easier to walk on even ground.
I had a nice visit with my daughter Chelsea for lunch, on the way to UCLA and the next day returning home. Will go tomorrow to spend Sunday, go to church. Big thanks to American Cancer Society and Extended Stay America for putting me up in a reduced rate room.
For the most part the insurance company, Blue Shield, has been great. Getting approvals for Pet scans and chemo-radiation I left to the doctors. While they have mentioned that it's some times takes a little more time and paper work, eventually approval comes. However, I continue to deal with Coram which is the company that provides my liquid nutrition. I believe I need an advocate. Number one it's just hard to get the words out for some one to understand me over the phone. I have all these EOB's (explanation of benefits) that don't seem to match what they have. I'm going to let it go another month and see what the next bill is and go from there.
I continue to be reminded of the simple things that once were, that I can no longer enjoy. I just have to keep focused on what I can do.
What is left of my tongue has the memory of feeling the lower teeth, but there are no teeth in the mid and right lower jaw. Heck, I can't even touch my top teeth with my tongue anymore. Just really frustrating.

Tuesday, February 13, 2018

Another check up at UCLA

Well tomorrow I have another appointment with doctor Luu at UCLA. He will check the wound on my leg that is still healing from the skin graft. Since I live almost 200 miles away I come down the night before and stay at Extended Stay America who partner with American Cancer Society to give me a reduced room rate. It has been almost four months since my surgery. Doctor Blackwell said the recovery would take a year. I'm only a third of the way there and sometimes very frustrated with the progress. My tongue, left side front is annoying, I think of it as an exposed nerve, feels like it is burned from drinking hot coffee. It has been that way off and on for about three months.

This week there were a couple of birthdays in the household. I wanted to go in and celebrate, however I also didn't. Much of celebrations are food focused, which is hard to be around, Also, I know that my family can understand my speech, I feel robbed of my voice. Most difficult over the phone. Visiting my daughter today, she had a few suggestions. She encouraged me to download the google translate app, type in my name and address, etc. and see it could be used to help people understand me over the phone. Well it didn't work. So we tried a voice recording, that didn't work either. But I do have an old phone that has a recorder on it, so that is the next step to try.

I'm inspired every day. This morning there was a quote in an email I received.

"Don't let what you can't do interfere with what you can do"

                                         John R. Wooden

And with that I accent the positive, the alternative is not an option.

Friday, February 9, 2018

lots of references to food

There are so many references to food through out the day. From advertising to daily interactions with family and others. It's just a constant reminder of the situation I find myself. I may be on a feeding tube the rest of my life, WOW! I have really taken my health for granted, even though I've been battling this cancer for 20 years. I never really wanted it to interfere with my life. For the most part I lived my life. In hindsight, (ha ha ha) I know I would have done more, been more reckless. It has been small losses over many years, easy to accept and move on. Now the cumulative effect weighs heavy on me hourly, daily. At the same time I know I'm still healing. The nerves in my jaw are firing trying to reconnect, sometimes causing shooting pain.When I'm around people, family just making facial expressions cause my jaw to tense up. Not exactly a charlie horse, but the tension causes pain. I never understood when people around me would make the statement, your health is most important.

Wednesday, February 7, 2018

Walked by Faith, walking by faith, walking by .....

I have been walking by Faith all of my life. It has not always been easy. Heck life is not always easy. Most of my life has been blessed with family, education and making a decent living. I came out of a dysfunctional abusive childhood. Most of the time believing (FAITH) in something better to come. The glass is usually half full.
I have always used suicide as a coping mechanism, since I was 12 or 13 when things got hard. I now know that it was the only control I felt I had over the situation at the time. It was always an option well into my late 30's. With more wisdom, ha ha, now I know that suicide hurts too many people. I was saved from executing my plan one afternoon by a simple phone call. There was enough of a distraction to nix the plan.
Anger bubbles up occasionally. I made the choice to get rid of the pain and remove an aggressive tumor. There are days, I would choose to exercise my right to pass with dignity. I know I have purpose, just struggling, as many do, with what that is. It's too easy to see what I can't do, or have lost, then what I can do. Right now the hardest part is not knowing how it will turn out. In my head (self talk) I can talk just fine, It's when I open my mouth, just sounds so garbled. This is nothing compared to what others have gone through. It's just difficult. I have to accept the plan, however different it is from what I had envisioned. Positive affirmation, I will walk by FAITH!

Saturday, January 27, 2018


Wow, getting back into this as therapy. I spend a lot of time now relaxing and recovering from my recent surgery. My cancer came back in 2012 when I came back to the states. Cancer has plagued me every two years since then, with mostly out-patient surgeries. Each surgery has taken from me physically and emotionally. The last surgery, October 2017, a life changing event. Followed up with Chemo and Radiation. My full time job is to recover. It will take a year to recover. Each month I'll be able to do more and it will get easier. I have had a lot of help from family.

Harper's Canyon Anza Borrego Desert Park

The animals use this cave now, in the past probably Native Americans.

Friday, April 5, 2013

Where's the Road?

We did a little bit of boon-docking (four wheeling) at Anza Borrego Desert Park. As you can see the geography is barren and devoid of plant and animal life. Like a mini Badlands of South Dakota. When I was younger I did some boon-docking. Brought back some good memories. The road (barley a trail) basically followed the gully up into the some times very narrow canyon. Very little evidence of early human habitation. Didn't find any ancient seashells, did find some rocks that may have some fossils. Thinking about the future maybe some day I'll challenge one of the grand children to crack open the rocks to find a buried treasure.