At long last

     Wednesday, June 25, 2014
     Well, it's been nearly 6 months since I found out I had throat cancer.  At times it has been the longest six months of my life.  But today was a very, very good day.  Yesterday,  I had my first post-treatment PET Scan, but didn't get the results until today when we met with Dr. Grossman and Dr. Hitchcock.  I had a bit of Scanxiety but not bad.  I knew I could not change the results but I was hoping I didn't need anymore cancer treatment.  I must say Dr. Hitchcock, my radiation doctor, came out into the waiting room when she heard I was there.  Geeze, she was more excited to give us the good news than Jane or I were when we heard that the Scan was CLEAN.  She was so cute and it was so refreshing to see a physician so excited about the good news.  Hurray!!!!
     I feel humbled looking back over the past months.  If I was alone and had no support group I doubt I would be where I am today.  Of course, first I have to say Jane was, and IS, my Angel.  Without her love, support and everything she did to help me cope with the side effects of treatment and drugs I would have been in big trouble.  I am forever in debt to her.  There is nothing I can think of to repay her.  I will try to be the best husband I can be in our remaining time together.  It will pale to all she has done for me.  I want you all to know how thankful I am to her.  Thank you, Jane.
     My kids, I realize, are not kids anymore.  Their support and love and maturity left me awe-struck.
I became closer to each of my children during these trying times.  For that I am grateful.  During my treatment, my daughter-in-law, Rachel, was diagnosed with Thyroid Cancer.  Tony's wife underwent surgery to remove her Thyroid and still responded to me with all her love and support as she went through her own trials.  I am so proud of her.  Heather, Katie, Tony, Rachel, Joey and my brother and his family went above and beyond to visit, help and support Jane and me during this time.  
      Oh, what a village I live in.  You ALL have been so supportive to both Jane and me.  There must be over a hundred people I need to thank personally.  I hate to try and list everyone here just because I don't want to leave anyone out because of my lack of acuity.    I felt loved and supported everyday of the last 6 months.  I don't think a day went by that Jane or I didn't hear from someone offering to help, cook, drive, visit or just say they loved us.  We are so lucky to have each and everyone of you as friends.  You are the cream of the crop, the best, one of a kind, and we will always be grateful to EACH and EVERYONE of you for all the help and love you shared with us.
       This will be my last blog,  I hope you have learned a little about going through something like this.  I hope it helps someone.  It helped me immensely during my journey.  It helped me center and think of what is and was important to me during this time.  I recommend it to anyone that is going through something hard.
      I am heading off on a new chapter of life.  My religion is compassion and love towards my fellow man and woman.  I hope to be a shinning example to others.  To make other's lives easier and happier.  I want everyone to know they have a friend.  I pledge this because I have been the recipient of that kind of love for a long, long time but especially the last 6 months. 

                                                                       NAMASTE

What to expect?

Wednesday, May 28th

     As my eyes barely open through the crust of the night, I wonder how I will feel.  First, I check my throat.  Of course it's dry, but how dry is it?  Sometimes super dry;  can't get my tongue, unstuck from the roof of my mouth.  Sometimes I can't talk until I get a little water in.  Once that's done, I know a little more.  Lifting my fat, heavy head off the pillow is the next test.  If I lift it up but I have to lay right back down again, that's not a good sign.  If I can shuffle to the bathroom and do my duty without passing out,  then that's better.   Then, if I stand there for a minute and I don't feel like laying down, hey, it might be a good day.
     I am hoping for more good days.  I slept till 11 am this morning.  It wasn't "Oh I'll just lay here for a few minutes, then get up." NO, I slept (out cold) till 11 am.  And it felt good.  I don't know why but I think I needed that extra rest.  Hopefully, it helps the overall need for energy I have.
     Katie has been texting me daily inspirations and telling me things that she is grateful for.  She also tells me what she is going to work on that day to be a better human being.  Compassion, being happy.  helping a stranger, meeting a new person, making work a happier place for all, etc. etc.  I've been doing the same and I can not tell you how much that has helped me refocus my priorities on my journey.  I hope we do this forever, it is really grand and wonderful.

Thursday, May 29th

Ron, my big brother, circa 1976

     Talking about what to and what not to expect, sometimes life throws you one from out in right field.
   My little brother, Mark, called me today to relay some sad news.  I have a big brother, Ron.  A real lone wolf, that guy.  And I have to say, I didn't live his life, but I am sure it was pretty interesting.  Ron was a lot like my dad.  Both enjoyed being alone, they had very few friends but the ones they had, were really close.  Once Ron left the proximity of the family, (which was in the early 70's) he didn't stay in touch much.  I talked to him about every ten years or so.  Sad, isn't it?  My little brother stayed in better touch, but it was always Mark making the effort.  Ron, by all reports, was living off the grid; he had a few legal issues tailing him from years ago.  He bought a house, but put it in a friend's name. He had no cell phone, email, or any easy way to contact him except through this one friend.   He didn't have an identifiable job for the last 15 years or so, but he did work a lot on cars and motorcycles.  I heard he restored a dentist's early year corvette in exchange for some dental work.  If you were Ron's friend he was one of those guys that would help you out with anything you needed.
   Now, back to this morning. Mark, my little brother, said a friend of Ron's hadn't heard from him for a few days so went to his house this morning. He found Ron dead.  Looks like natural causes, but he was only 64.  I spoke to him last month over Skype during my Mom's 90th Birthday party,  and he looked as well as I have ever seen him.  He had lost weight (which was good), his teeth looked great and he was very talkative and interactive, especially with my mom.  This has hit me like a ton of bricks.  I wish I had talked to him more, even though he made that hard.  I hope he knew I loved him, even though he made that hard, too.  When one of your brothers dies, I am just learning, it leaves hole where once there had been none.
namaste

What, me worry?

     Alfred E. Neuman, circa 1955, "What, me worry?"   He maybe the first guru of the modern age.  After much study and research I have found that the first step to becoming enlightened is to let go of worrying.  One cannot live in the moment if one is worrying about the future.  And worry provides no new action that may affect the outcome.  It is good to plan, think of all the options, formulate a plan and go with it.  Yes, you can revisit your decision, you can change your plan, but it doesn't help to worry about the future or what is going to happen until it happens and then you can start the process over, or accept the results.  Worrying is different then planning.  It is when the mind won't let go of the issue.  It feels a lot like a washing machine, tumbling the issue over and over.  Not analyzing the plan but just thinking over and over about the worry lines.
     June 24th I have a PET scan scheduled which will show if I have any cancer left in my throat or body.   It would be a good first sign if all is clear.   So, I figure, I can worry about it, OR I can live each day until then.  So that's what I am trying to do.  My Oncologist mentioned that some people get scanitis.  They worry so much about their upcoming scan that they get neurotic, or even psychotic, over the actual test much less the results.  There is nothing one can do to affect the outcome other than have a positive attitude.  Worrying is a drag on a good and healthy life.  One must leave the worry alone.  That's why it's a first step to enlightenment.  You can't have worry and live well in the moment. 
     Next step is patience, at least for me.  I have to have patience that I will get stronger than a 90 year old.  My training seems to have its own schedule.  One of my favorite people (who lives in Phoenix)  reminded me to relax, life is more than activity.  Namaste!

Down then Up

     So, I took it pretty easy Monday and Tuesday after Joeys graduation weekend.  Hey, and guess what?  I felt really good yesterday.  I could feel the grip of fatigue loosen just a bit. It was the first time in almost 4 months that my body felt like my old self.  I am having trouble describing how I felt but let me say I was SO HAPPY that the feeling of being normal is still within reach.  I went straight to my calender and put a happy face over May 7th.  I was up most of the day,  I played some music, went for a walk and generally was more alert, interactive and comfortable.
     So what has this taught me?  Well for one thing, patience. Even though it may seem like it is going on forever, hang in there.  I am grateful for having experienced the lows of recovery.  I feel more empathy for those going through difficult times.  I feel more open to help and assist in any way possible.  I am grateful for the experience and to learn from it.  Although it hasn't been very fun or even funny.

      I have always worked with kids who have congenital or developmental problems.  Some of them are quite severe and are burdened with a lifetime of trials.  I have always been respectful and in awe of the way the kids and their families handle their disability.  When I do start to feel low it is best to remember their is always someone worse off and dealing with very difficult times.  Always look for the silver lining, the sun behind the clouds and be grateful for the things you do have.  The funny thing is that I have to actively think about that in order to incorporate it into my daily routine and thought process.  It is easy to take the "woe is me" attitude and that is what I fight sometimes. Always learning, always growing.  Have a great day out there. Be kind to others and remember everyone is dealing with struggles, Everyone.   Nameste

Tough times

     Hi, Been awhile since my last post.  Not much happening though. I am still in the dull-drums with very few ups and more downs than I was anticipating.  Highlight of the week was having Joey graduate and having family in for the weekend.  Jane thinks that may have worn me out a bit.  She's right of course.  Now a few days of total rest.  
     I met with Dr Hitchcock a couple of days ago and she said I looked good and to hang in there.  OK, that's what I was expecting.  Then yesterday I was pretty down.  Very tired. My throat was reacting to food and I was having trouble wanting to eat anything.  My biggest complaints are fatigue, for sure, and my appetite.  I got pretty frustrated yesterday because I thought by this time I'd be out jogging a bit and maybe riding my bike with a bit of Yoga or swimming thrown in.  Well, that ain't happening.  At least not yet.  I was a bit pissy yesterday, but then realized I was being pretty selfish and not very grateful for all the things I do have.  So, I feel better today and I am going to step back,  rest a bit longer and then maybe next week try and be a bit more active.
     I'm not sleeping as much as I was a few weeks ago, but I am laying around just as much.  I have played music a little bit more.  The band has a gig in June and I am pretty shaky, so I feel a little pressure not to sound too bad.  I guess I could just stand there and fake it.  The rest of the guys are really good musicians.. 

   Well, I'll be on my way.  More rest and more focus on Gratefulness.  Namaste

Ready or Not.

Ok, it is May 1st.  I am so glad April is Gone.  I think of all the trials with treatment and everything involved it is the post treatment month or 6 weeks that's the worst.  In Orthopedics, as in most things in medicine, after an injury we all say it takes about 6 weeks for the body to heal itself.  Well I am counting on that to hold true.
      I am rewiring my brain.  Time to SLOWLY increase everything in my life.  More food.  Overall, I've lost about 20 pounds.  I want to gain 2 or 3 pounds this week.  I need to start eating more.  That may require some force feeding when I am not very hungry.  I'm OK with that.
     I need to sleep less.  I need to wake up earlier, get out bed, and stay awake.  Then  a nap in the afternoon would be acceptable.  Need to try and get to sleep by 10 and get on a schedule.
     Exercising; got to do it.  I need to do a little more each day.  I will walk a little farther, and start some calisthenics to start getting a little core and a little shoulder and arm strength.  I would love to climb again, this or next month.
     If anyone wants to come over for a walk, do a couple of push ups and have a glass of water, come on over.  Namaste 

What next?

     Well, its late April.  I had been hoping to start a little exercising around this time, as I considered my recovery, but no dice.  Instead I am dealing with fatigue, fatigue, fatigue.  The pain is getting better and it is easier to swallow.  Thankful for that.   But if it is not one thing, it is another.  Fatigue, overwhelming, unbelievable, really.  I get tired lifting my head off a pillow.  I go to the bathroom, stop in the kitchen, say hello to Jane and I need another nap.  For the last week I have slept 16 or so hours a day.  I am sick of sleeping but it just seems to be part of me now.  I don't fight it.  I figure my body must need it.  There is no way not to really.  Just go with the flow.
     My Mom turned 90 this week.  My brother had a party for her in Newport, California.  I had to miss it.   No way I could travel in this condition, and when I got there, I'd have to go to bed.  We faced-timed and that was the next best thing.  Even 15 minutes of face-time exhausted me and off to sleep I went.
     Eating is a chore.  Laying in bed doesn't build much of an appetite and sleeping til 3 or 4 every afternoon doesn't leave much time to eat.  So I eat as much as I can when I sleep.  Its not fun eating from a pump at night.  Waking up half nauseated from a liter of ensure stuffed in your gut.  Oh, yummy.  I've read about this phase of recovery and talked to a few folks.  It is accepted as very frustrating but must get through it. Don't let it get me down, wait a few more days hoping to feel better.  Everything else has eased and if I get some energy, strength, endurance and power back, I may start to feel OK about all this treatment.  Until then,  The fatigue portion sucks, being exhausted sucks. and yes Cancer Sucks. 
     How on earth can I weigh 134 lbs?  I started at 154 or so.  I figure I am down about 20 lbs.  And I have not done a thing except walk around the block once a day.  Other than that, nothing.  Keeping a stable weight is hard,  frustrating also.  Half the time I am nauseated, the other half I am asleep.  The next week I have to focus on getting back up to 136 or more so Ensure here I come.  I want to start just eating oral (normalish) food.  I've been trying but so far only managed cereal in the morning and some soup at night.  No appetite and everything,

and I mean everything tastes weird.  I've been dreaming of food and what I would really want is a GREAT Hamburger, fries and a beer, tasting the way they used to taste.  I hope I get back to that place one of these days.  Namaste