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
    

The Dulldrums of Recovery

I've moved into part two of the recovery phase. Apparently, phase two is like a holding phase.  Giving my body time to continue healing inside.  That includes needing a lot of sleep, that is for sure.  I've been exhausted.  Two days ago I was up doing some easy sorting, in the furnace room.  Well, it is day three and I think I am still recovering from that effort, or I'm just a wuss?  Hard to say.  This is where patience comes into play.  Taking enough time to recover.  Giving the cells of your body time to regroup, fight off inflammation, clean up damaged and/or destroyed cells, and allow a regenerative atmosphere to take place so hemostasis can take over and strength, endurance, and power can replace fatigue and a fractured infrastructure.  These are things that I am hoping for sooner than later.  But I can take them as they come.
     You must be on the look out.  A couple of days ago I was starting to get some more active throat symptoms returning.  Strange, I thought.  I have just finished a 2 week course of Diflucan for oral thrush.  Grabbed my head light and took a look inside the throat.  Bummer, one of my Tonsils was covered in that whitish covering of thrush.  Makes sense, same symptoms, just finished the meds.  Time to start another 2 week course to try and finish the yeast infection off this time.  This is an example of a lot of little setbacks you have to deal with, sometimes everyday.  Patience, my friend.  All will come to those who wait.  So I wait and wait.  Reminds me of when Ernest Shackelton, as he woke one morning,  address First mate McCarthney.  McCarthney had been up all night at the rudder, through a dreadful night heading back to South Georgia on the James Caird.  Shackelton asked, "How are you doing?" He replied, "Oh, it is a grand day, Skipper, a grand day."
     I have heard many times through my life, and I am sure you have too,  waiting is the worst.
 In almost any situation (waiting for surgery, waiting to give a talk, waiting for an interview) you just want to get it over with.  Well, this phase is similar.  I just want to get on with it; to the "I am definitely getting better" phase.  I guess I have to give it some more time.  Namaste.

 

Treatments over; where are the bells and whistles?

      Well, I've been waiting so long for this.  A week and a half ago was the last of my radiation.  I finished on Thursday, March 21st.   I got through that first weekend knowing that I wouldn't see an immediate improvement but, hell, the symptoms even got worse.  No fair.  We increased the dose of the pain medicines and it seemed to help a little, but the nights were awful.  At four in the morning, trying to swallow a pain pill, all the while your throat feels like burning embers, was misery.  I waited till Monday and Jane talked to Dr. Ying's Nurse Practitioner.  We decided to go with a long acting pain patch, also recommended by a good friend with a lot of cancer pain experience. That way I didn't have to swallow as much.  That sounded better already.   We would also try a liquid narcotic to help soothe my throat right at the cause of the pain.  By this time I was taking almost all of my nutrition through my G-tube.  Glad I have that or I would have starved to death by now.  Don't get me wrong, I don't like the G-tube (nearly hate it) but it is necessary, for sure.
      Everyday,  Jane and I made little changes to the medicine routine; a little here and a little change there. We asked other patients and their caregivers what might help and what didn't, which has been a big help.  Thanks.
     Pain, what a weird little variable;  always changes throughout the day with ever changing multiples of color.  Symptoms are hard to describe, hard to know where or why they are happening at any certain time.  There is a condition called, Congenital Insensitivity to Pain  (CIP).  Sounds great, hey.  Lets say we all had to pick a disease.  That one may be a good one to consider.  No Pain, cool. I'll take that one.  Not so fast.
     Through the years, I have seen 3 patients with this syndrome.  It is a nightmare.  It is a syndrome that shortens lives and leaves them incapacitated through much of the childhood and teens.
Injuries don't heal.  Infections don't get better. The human neural system doesn't use its protective mechanisms to let their tissues rest long enough to heal.  Same for broken bones. They don't feel the pain and are left unprotected. The patient will begin to walk on the break before and the bone doesn't heal.  If they have plates, screws, or rods put in their bones, they have a higher rate of infection  because they don't hurt where the wound is or they begin walking or using the bone too early and the plate or screws fail.  Inflammation increases and protective response is lost and infection and non-union take hold. Try telling a five year old not to walk on his or her leg because it is broken even though it doesn't hurt.  So, in a strange sort of way, we should all be grateful for the pain that we feel. 
     Ok, I can buy that.  I just don't like the intensity side of the the equation.  Sure, let me feel some pain,  But does it have to be the extreme pain of "ultimate suffering" (from The Princess Bride), level 10, to get my attention?  No.
I will take a level 2 or 3, thank you, very much. But, I guess it doesn't work like that.
     So for the last 10 days, since my radiation finished, the symptoms got worse and worse.  It was a real emotional bummer to be done with treatment but then have the symptoms worsen day by day and night by night.  Emotionally and physically it was draining.  After almost two weeks of being finished with the treatments there is finally some good news.  Yesterday,  Monday, March 31, was the first day I felt like I was starting to turn back towards the sun.  The pain in my throat eased a small bit; but it was there, I felt it easing up.  My energy was a little higher; I was able to be up a couple extra hours during the day. There was a brightening of my attitude.
     I hope I've reached the end of the pipe in the Shawshank Redemption sewer pipe crawl

.  One hell of a pipe to get through, but as you are reaching the end, the smell of fresh air and the chance of anticipation of good health and happiness is overwhelming.
Namaste