Wednesday, April 18, 2018

Finding myself isolated

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.

Tuesday, April 10, 2018

Follow up Doctor Appt.

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.

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!