WHAT'S UP

Finding myself isolated

2018-04-18T21:28:00.000-07:00

Once again I'm finding myself more isolated. After going to the doctor for a check up on the skin graft on my leg, I head to San Diego to visit family. My leg is healed, doc actually said, you should have emailed me a picture and saved the trip. Oh, well I really need to get out.
I feel really isolated, at home I'm really not a part of the family. I can't eat with the family, nor can I talk very well for sustained periods of time. I sound like an idiot. I know I'm experiencing some depression. I'm somewhat despondent. Mostly when I think about the future. I have brief periods of self talk about travel once I recover from this ordeal with the dreaded CANCER! I broke down to my daughter, she encouraged me to get help. I have been in counseling before and have benefited from it. I don't really want to visit family again. I know they all mean well, say I'm doing so well and staying strong. No one really gets it. No one really understands! I have lost so much, I'm the only one that can turn it around and not let it get me. It's not like I don't have fun or a good time, laugh. It's the low after the fun that gets me. Too much of a roller coaster ride for me, at this time in my life. I just don't want to be around people.
Heading home tomorrow after visiting my Dad in the desert. The wind blew madly upon arrival two days ago, and now it is blowing fiercely again. Time to go home and take care of paper work, and schedule pre-opt. with my primary physician.

Follow up Doctor Appt.

2018-04-10T17:05:00.002-07:00

Well, I had a follow up with the swallow specialist last Friday, April 6, 2018. He wants to do surgery to remove part of the epiglottis to help me swallow easier, scheduled for June 14, 2018, Flag Day. A week after the surgery I will have another swallow study. Won't know the time till I call the Monday before the surgery. With the type of surgery I had (jaw replacement) it's common to have to resection the epiglottis to get it out of the way of the esophagus.

Currently, I'm at extended Stay America, in a reduced rate room, provided by American Cancer Society and Extended Stay America, I have a doctor appt. tomorrow to check on lower leg skin graft. It's all healed up so just a formality.

I have been having lots of feelings of isolation and depression lately. No one can really understand all the consequences of never being able to eat solid food again. I know I've been isolating my self also, I just don't want to be around people in general. We just don't realize how much our culture is focused on food, the preparation, smells, talking about it and of course eating it. I want to get involved in volunteering some but then I also want my freedom to go and travel more once I do recover. Also, very difficult to even try to talk to people.

Difficult times but I'll get through it. Helps just to put it down in writing.

2018-04-04T21:54:00.002-07:00

Mad as HELL!!!

sucessful check up

2018-02-17T11:15:00.000-08:00

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.

Another check up at UCLA

2018-02-13T17:24:00.000-08:00

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.

lots of references to food

2018-02-09T09:56:00.000-08:00

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.

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

2018-02-07T14:17:00.000-08:00

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!

Restart

2018-01-27T13:49:00.000-08:00

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

2018-01-27T13:08:00.000-08:00

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

Where's the Road?

2013-04-05T08:21:00.001-07:00

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.

Spring Flowers A Sign of New Life

2013-03-31T16:37:00.001-07:00

A sign of renewal of life. The colors are vibrant, such beauty. What a wonderful Easter.

Affordable Care Act (ACA) some of what I see

2013-03-08T16:48:00.001-08:00

March first my health insurance premium went up 400%. That is outrageous! My premium was fairly low by comparison. I can still afford my health insurance. Everybody I talk to, same story, the health insurance has gone up. Where will it end? Overall I feel very fortunate that I have insurance coverage.

A Tree Limb Took Out Two Solar Panels

2013-03-03T07:41:00.000-08:00

Last wk. a tree limb took out two solar panels at my tree house in Costa Rica. What a bummer. Will have to get it fixed. This is the only source of electricity for the cabin. Took care of financial transactions this am. What would I do without Internet?Maybe life would be simpler.

Grand Canyon Update

2013-02-07T14:29:00.000-08:00

Visiting the Canyon is a must! Don't stay too long, you may take it for granted. The colors are spectacular at beginning and end of day. To get more perceptive take a day hike on the South Kiabab Trail. We were there two full days, and of course we could have stayed longer. We experienced hiking the rim (south), sunrise, sunset and a hike down into the canyon. There are museums to see and if you want to camp take a mule ride to the bottom and camp over night. We stayed just outside the Nat'l Park with many amenities at the Best Western. If you choose to stay in the park you can camp or stay in rustic accommodations that have been there for many years. It is hard to believe that the combination of geology, geography, water and time have shaped such a wonder. The present day amount of water going through the canyon is just a trickle compared to days of old. Now the water is put to use generating power and supplying water to millions. A lot of hard work and a great deal of politics created the present day system.

Grand Canyon

2013-02-06T19:42:00.001-08:00

Once I get here I can relax and enjoy. Learning about this "Wonder of the World" is an awesome experience with another world traveler. It's great to learn from my daughter on how to maximize the benefit of travel. The weather is cold, we are enjoying the canyon this time of year. Low season has its benefits. I can only imagine what it's like in high season. We did the fly drive combination, I'm very impressed with the Ford Focus for the drive portion. Solid car good fuel mileage. The colors of the canyon are amazing. I was here as a kid. Was at Mesa Verde as a kid also, think I'll hold on to that memory and not return. Much more appreciated today. Have another day to go for a hike in the canyon. Awesome day!

Another day trip to Anza Borrego Desert Park

2013-02-03T18:09:00.001-08:00

Today I was able to go back to Anza Borrego Desert Park. Further investigation was necessary of the native campsite that I had mentioned in a previous post. A fire cleared the thick brush in the area to expose more artifacts. We found some artifacts; a shard of bone that had been tooled, chips of pottery, materos, however no pestals. Of course the area has been picked over for many years. On the way home we saw a herd of Borrego mountain sheep. Like the Bighorn, a little smaller.

Day Trip to Anza Borrego Desert Park

2012-12-27T18:37:00.001-08:00

Today I went with family to Anza Borrego Desert Park. My dad has property on the boundary to the park. We were able to enjoy the quite of the desert and all its beauty. On the way home we took a detour up Grapevine Canyon. There were a few spots that we may have had to use four wheel drive if it was wet and muddy. We passed without using the four wheel drive. While going up the canyon that had been burned in the last year, we found these rock formations, indicating previous native habitation. I'm looking forward to going back and investigating the area.

The Ride

2012-11-28T19:00:00.001-08:00

Well I took a ride on the motor bike. I had the option to take the big ford pickup, it was cold and over cast. About forty-five minutes to the doc. office. I've rode when I was younger and have spent some time on back roads. However, going with the flow of traffic watching out for those who don't see you on a motorcycle can take a lot out of you. I'm glad my sis suggested I take a slicker otherwise I would have been very cold. There were a couple of other motorbikes that got in right beside me without me seeing them in the mirrors. That was a wake up call as to what I need to work on in the practice toward getting my license. Definite, I need more practice before I go on any long rides.

Hiking the "Slot". Anza Borrego Desert Park

2012-11-26T13:48:00.001-08:00

After T-day we took a hike. A narrow wash that I've heard family talk about for a few years. This time I was able to go with.

Solar array is doing what it should!

2012-09-24T11:45:00.001-07:00

When I came back to Costa Rica I was all gung-ho about the solar I had installed for electricity for my cabin. However, the panels did not get as much sun as I thought they would. They were in shade a good part of the day. So we moved the panels into a more sunny location. It's amazing what a little sun can do.

A baby Boa

2012-09-07T07:45:00.001-07:00

Just a quick post of a baby Boa Constrictor. I saw this on the way back from shopping. Just on the side of the road, we watched him for about a minute, then decided to get out the camera. Just as I was starting to take the shot he or she decided enough is enough I'm out of here, feel blessed to get the shot. Also, a random shot of the flower that is blooming which I watch the humming birds come to on a regular basis, just right there when I look up from my chair while reading. And a pic of my place in the jungle. fincabellavista.net

Gringo Domingo! (American Sunday)

2012-09-02T12:08:00.001-07:00

I was able to go down to the river on the north side of the property fincabellavista.com for a swim.The first time I'd been down to Rio Piedras Blancas. It's a much bigger river than on the south side of the property, Rio Bellavista. The last part of the decent to the river was almost straight down. It paid off with a great access to the river, small pools and such to explore. The sun was right on the river for a short period, nice start to the day.

Back in Costa Rica

2012-08-01T11:43:00.001-07:00

I have been back in Costa Rica for a week now. First thing I did was try to get the phone going at the airport, apparently an IPhone needs to be configured for Costa Rica. The Govt power and communications company can't do it or won't. So much fun! Looking forward to seeing how the new solar works at my jungle cabin. The next day I purchased groceries and refrigerator and headed out to my place. After paying way too much for a cab, I plugged in the refrigerator, just my luck the one in the store that doesn't work. So another trip to town, oh well next week. I was able to exchange the refrigerator for another, more $'s for the a cab and yes the fridge works. However, after about six hours I noticed the warning light on the batteries was showing red. Well, we have had two and a half days of rain, we all know that if the sun doesn't shine on the solar panels, that the batteries don't get charged. I'm thinking propane refrigeration now. I'm enjoying the peace and quite of the rain forest. I'll head back to the States the end of September to be with family and do some traveling in the Midwest.

More solar

2012-07-16T11:46:00.000-07:00

Last week I was able to visit family on the Central coast of California, San Luis Obispo County. On the way over I encountered a solar farm in construction. www.topazsolar.com & www.firstsolar.com These two links will take you to the web site to gain more information on the project. The project is on the Carriso Plain on route 58 going from Bakersfield, Ca. to San Luis Obispo, Ca. Route 58 is very desolate, you get an idea of how parts of the west were before so much population and all that comes with progress. You also have to make some sharp corners and jog back and forth around the property owners land. Back in the day the roads (wagon trails) didn't cut through a persons property they jogged around those 160 acre homesteads.When I went through there last October the construction hadn't started yet. As I remember, it was just happen stance that I took this route. Last Oct. I missed the exit for route 46 to Paso Robles. Well last week I was planning on going route 101 along the coast, beautiful drive. Some how I missed the exit for route 101 and continued on route 5 over the Grapevine. Of course there was construction going on and the signs were not as clear as they could be. Sometimes the best part of the journey can be getting there.

Price of what?

2012-07-10T14:57:00.001-07:00

I like the price here. I don't think I'll like the price of Healthcare when the Affordable Healthcare Act starts doing more damage to our economy. Come on the Gov't has screwed up Social Security and can lose track of millions of Tax payer dollars, do we really want the the Gov't to take over or, tell us how to handle our healthcare?