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