Day 173 – Life goes on!

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Day 173

Hello friends!  Monday night and another wonderful day.  If we could just get over this rain – I don’t think that it is ever going to stop!  We have been just plugging along trying to do as much as we can do while living life on life’s terms.  Two weeks ago I worked for Eric as normal, but as healing seems to go, after yoga that Thursday night I hit the wall and was not able to get up on Friday so Ms Kathy did not get a clean house for Mother’s Day.  She was fine with it and we piddled around the house and shop on Saturday.  Sunday we took a trip to Ft Clinch Park in Fernandina to enjoy Mother’s Day at the beach.  Albert, Jan, Will and Jessa joined us and we celebrated with lunch, shark tooth and shell hunting. The cool thing about the beach at Ft Clinch is that it is at the mouth of the St Mary’s river and with the jetties

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Happy Mother’s Day!

you can have either an ocean or sound experience depending on which side of the jetties you go. Needless to say, we had a wonderful day.  Monday I had my 6 month labs, CT and PET scan and followed that up with a customer visit, a stop at the store and our monthly wood turner meeting.  I left the house about 8:30 in the morning and we didn’t get home until about 9:45 that night.  Between a day at the beach and running around all day I had to call in dead Tuesday because I

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Test Day!

could not get out of bed again!  The not getting out of bed is not getting any prettier, I rolled out about 11:30 to eat, take my meds and get some water down.  I was back in bed by 12:30 and slept until about 5 when I got up to eat again and was back in bed by 8:30.  Wednesday I went to St Augustine to pick up a project, Gate Parkway to deliver a finished job and finally hit the shop for an hour or two to finish up a couple of wine stands for a customer and his dad.  I just just haven’t figured out how to effectively plan my days.  I try to plan for 4 to 6 hour days, but when I lose one or two days it just snowballs. It is a good thing that I am still telling my customers that it may take awhile to get their jobs finished.

We ended up the week Saturday with our bi-monthly SoMMA meeting.  This meeting we had Joyce Gabiou who shared her techniques for collage. You can see Joyce’s work by clicking here Joyce Gabiou Artist.

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Joyce Gabiou

As I was laying around Sunday recuperating it dawned on me that we began this cancer adventure a year ago this month.  We had dinner with Amy and Keoni and I started to feel puny the week after.  We went to Louisville the following week and Kat got sick on the plane and I thought that I picked it up because my lymph nodes had begun to really swell.  After a bought with pneumonia those nodes stayed around and the rest is history.  It is really hard for me to believe that it has already been a year –  diagnosed, treated and getting my 6 month post treatment check on the 30th. What a year it has been, fear, happiness, love, faith, pain, hope, reliance on self and others. My reliance on God has grown 10 fold as well as my reliance on others.  I have had to

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The Daring Duo!

learn to trust that God has a plan and have faith to do my best to accept and implement that plan with humility and grace.  I have had to learn to tell the truth when it comes to my needs and capabilities.  I have had to learn to reach out and ask for help when I need it and to fearlessly share all my feelings with you.  Tonight we share our 103rd chapter so far and I need to thank you for sharing them with me.  I could not have made it this far without you and your support.

Don

Quote of the day – Optimism is the faith that leads to achievement. Nothing can be done without hope and confidence.

Helen Keller

Day 116 – Coming up for air

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Day 117 Compression Mask

This week I have been trying to get on a schedule – ugh I know – it sucks.  My goal was to get up Monday through Friday at 8:30.  Friday morning I woke up in a daze about 8 and I didn’t know what day it was or if Kathy was home.  For the most part it has been very successful and exhausting.  I have worked in the shop 6 days this week and have some progress to show on Eric’s project.  A bunch of rest breaks and slow progress, but I am grateful.  Now I can’t tell you that I actually made it up at 8:30 but 9:15 was the latest and I am okay with that. I made it to

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Chilly in the Shop

yoga 3 times this week but the downfall was when it came time to share with you – there just was nothing left.  I think the latest that I was up was 10 and that was yoga night. On yoga nights I do not get home until 8 and after I eat and sit down it is all over and when Saturday rolled around I did not get up until almost

2.  I barely had time to eat and take a shower before it was time to go celebrate a friend’s life at a memorial yoga practice.  My friend and yoga instructor Tricia lost her son Max to addiction and each year holds a practice to raise money for Gateway Community Services in honor of Max.  We had 85 people show

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4th Annual Practice in memory of Max

up to support her and it was awesome to see some old friends that I had not seen in awhile.  I was in bed by 10 and got up about 9:30 had breakfast and spent wonderful Sunday in the shop and hanging around with Kat.  She worked on “special projects” doing epoxy pours and alcohol ink and started to clean out the flower beds.  She finished off the weekend grilling a rack of lamb and preparing rice, field peas, corn and tomatoes.  I am really glad my taste is coming back!

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New Style Table

I am feeling pretty good!  Like I said tired but it is a good tired and I’m pretty sore.  The taste is still coming back slowly and the saliva glands are working better.  The only time that I have trouble with that is if I talk too much or try to eat to fast.  We grilled hamburgers Saturday night and I ate a whole burger, but it took me an hour to eat it.  I ended up cutting it in bite sized cubes so that I could chew it thoroughly enough to swallow it.  Any bites bigger than that I could not swallow unless I sectioned

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Beautiful Sunday

off my mouth like a squirrel and chewed smaller portions before swallowing.  Yeah I know  – you really needed that picture. I am still drinking the dandelion detox tea at night and have been able to start drinking my normal morning smoothie except I am substituting Ensure instead of coconut milk. I continue to do the daily lymphodema exercises and have been wearing my compression bandage at night.  I am up to keeping it on for 6 hours but it is a struggle.  Because of the toothpaste I have to use at night I cannot drink so at some point I end up with this “paste” in my mouth that I cannot swallow because of the bandage.  That and the itch it puts on the beard I have to get it off.  Weight is holding at 160, but if I keep eating like I am that will be short lived.  I still love the hearing aids and look forward to finding out what else they do next week – who knew!

So next week is another return to doctors appointments.  I have at least one scheduled for each day.  Mostly follow-ups but I do have an eye check-up and I think that I am going to have to buck up and have my prescription changed – ahh the joys of aging and treatment!  I still say both are definitely worth the effort because we have been so blessed by the experience that it is almost indescribable and it has been easier for me to see it especially when I feel better.   All of the efforts are beginning to pay off. I have so much more to say, but it is almost 8 o’clock and I need to still call my Mom and get into bed.  I will try to get with you more this week, but no promises!

Don

LESSON OF THE DAY –  “Thank You” is the best prayer that anyone could say. I say that one a lot. Thank you expresses extreme gratitude, humility, understanding.”

Alice Walker

Day 98 – Let’s Chat

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Day 98

Pretty decent day, a little chilly, but I made it to the shop again!  Working on Christmas presents that I haven’t been able to get to before now.  I also have a table base that Eric is chomping at the bit for me to get done, but it is labor intensive and I cannot work on it long.  Yesterday was a busy one.  I had the appointment with Dr. Moy, the ENT and his Audiologist, Angela.  Well she delivered the bad news first – 1. I need hearing aids and 2. That they are $5,200.  It is not as daunting as it seems, the insurance covers 80% and that only leaves $1,000 but they don’t file the insurance.  So we need to come up with the total to28660595_10156225959864310_3026021416681906478_n get the bill so we can file the insurance and get the money back DRAMA! But we will get it handled like we always do.  I know it sounds flippant but God always steps in when we need Him and that is why they call it faith.  Next up was Dr. Moy who was just pleased with the recent findings and the scope that he did looked great.  I will continue to see him every 3 months this year.  From there I delivered the “ball cap” job to ScoDon, hit the bank and collected the movie tickets that I won from SymPortico Realty. And the bonus was getting to visit with my sweet friend Laurel Black.  If you need a premium realtor you cannot go wrong with Laurel and her group. Here is their Facebook page take a look! SymPortico Realty  The downside to the day was not being able to get to yoga, but I get to do that Thursday.

Now for the chat, I haven’t talked much about what is going on with recovery other than the ever present tiredness.  Things are pretty good – fantastic to where we were last month, but there are some issues.  My “jack-in-the-box” skin conditions seem to have settled down to the occasional rash of pimples.  These are little red dots that look like a fire ant bites.  For those of you up north a fire ant bite is a swollen spot about as big around as a pencil eraser that is angry red and has a tiny puss spot in the middle.  These can appear quickly and can be as few as one and as many as 20.  They typically show up on my cheeks, chest, back and arms and with a treatment they go away in about a day.  They are not typically painful, unless they show up in my armpits, but it is just another curious part of recovery that no one can seem to explain. Next up is the ever present cold.  Kid’s I am freezing my butt off.  It is 71 in the house tonight and I need a blanket.  This week I have slept with the mattress heater on and my legs and arms at Dr. Moy’s office yesterday were purple.  The good news is that clothes and blankets are readily available. Next up is the tooth and gum treatments needed due to lack of saliva.  I am supposed to put a thin layer of a special toothpaste into fitted trays and wear those trays while I sleep, but I just can’t wear them.  The answer, I have to brush with the toothpaste and not rinse or drink all night.  This stuff is weird tasting  and without additional water I wake up with this goo in my mouth and throat in the morning, but with a good scrubbing and a drink it is okay.  I will wrap up with the hardest one.  My brain is not quite working right – chemo brain. For me it is the well known feeling of not being able to recall something.  You know what I mean, you’re talking to someone and you can’t think of what something is called or somebody’s name. Last Saturday Kat and I were sitting on the porch and I was trying to tell her something and it took 5 minutes for me to finish a sentence.  It shows up in my spelling and typing too.  If it wasn;t for speel check my sentences would read like this. My fingers just won’t type what I want if I am not looking at them. Another thing is remembering what I am doing.  I have tried 3 times tonight to remember to turn on the bed but to no avail.  But please, don’t get me wrong.  Like I said earlier, this stuff is just a bump in the road.  All of these annoyances will hopefully go away in time or can be remedied and they don’t hurt or affect my daily life.  It is my daily life and I am OK with it.  I feel better than I have in months.  My beard is coming back, my taste is coming back, I am getting some energy back, they are fixing my hearing and my turkey waddle – and don’t forget I am cancer free!  Modern medicine and the God of my understanding is good.  I am blessed to be living.

So with that my friends I am going to bed with a smile and joy in my heart.  Have a great couple of days and we will chat soon.

Don

LESSON OF THE DAY – “A man can no more diminish God’s glory by refusing to worship Him than a lunatic can put out the sun by scribbling the word, ‘darkness’ on the walls of his cell.”

C. S. Lewis

 

Day 95 – Trudging

2018-03-03 17.51.36Hey what is with this weather??? Come on I was really digging this heat, but it’s still another day in paradise! Typical of the recovery it has been another “pay to play” week.  After the 12 hour day and sharing the good news with you Tuesday I slept until about 2 on Wednesday and picked Ms Kathy up from the airport about 7.  Her trip and my activities had us both in bed by 9 that night.  Thursday I got up to go see the crew at Dr Breitmoser’s and get my teeth cleaned.  I was feeling pretty good and had scheduled a meeting and lunch with my friend Peter to catch up, but by the time Kim finished cleaning my teeth and I caught up with Jan I had to get in the bed.  I called Peter and canceled and was in the bed by 11:20 and did not get up until 4.  I did go to yoga but was back asleep by 9 that night.  Friday I had to cancel on Peter again because I couldn’t get up until 2 but I was able to change the sheets, gather up the laundry  and pick up the house a little bit so by Saturday I was feeling pretty good again.  I felt so good that I hit the shop and finished that “ball cap” job!

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Finished! and still have it!

Turned 3 more of them and was so happy the only problem was cleaning up all that PVC.  It was stuck to every tool I used, my lathe was white and I know there will be white streamers out there for weeks.  But it was so cool to be there and get something done.

Poor Kat had to catch up on her Alcohol Ink class this weekend because of her traveling  and spent 7 hours on the computer Saturday – needless to say we went to bed by nine last night!  Today was pretty nice too, we started the day having brunch with Jan and Albert and Will and Jessa.

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Sunday Brunch Bunch!

We all met at the Uptown in Springfield and enjoyed a meal and some catching up.  It had been so long since we had seen them that we finally gave Jan her birthday present – it was only 3 weeks late.  Next stop was the Jacksonville Gem Society to pick up our glass projects from last week.  Not only did we get to do that, Heather was teaching a silver class on making fidget rings. They started from flat sheet silver and silver wire and it was pretty cool. I think that this membership is going to be interesting.  We finished the afternoon with Bernard and Susie.  Kat had made

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Fused Glass

pot roast and we took them over some dinner.  Susie is doing better with her shingles, but she still needs prayers – she has been at this for 5 months.

So that gets you up to date.  I can tell you that I am really doing much better.  The little successes have helped me to come to a peace with the rest.  If I have to sleep – I have to sleep.  It is just a part of the recovery.  Do I want to do it?  Oh no – I would rather be spending my days in the shop and catching up with all of you that I haven’t seen for months, but I’ll take it today.  The good days are better and the down days are predictable. And with yours and God’s backing I am golden.  The post that I made Tuesday saying that we got this had 139 likes and 90 comments and that does not include the blog comments and likes.  I keep telling you that God loves me and I’m blessed with wonderful friends and family!  Thank you for being by my side.  Next week – follow up with the ENT, Dr Moy that did the biopsies that found the cancer in the throat.  Yippee – another scope through the nose and hearing tests.  The chemo and radiation have effected my hearing and he is going to check that out.  I have an appointment with Louise to check my mental well being and finally a gender reveal party for Will and Jessa’s baby.   It’s going to be another great week!

Don

LESSON OF THE DAY – “Nothing in life is to be feared, it is only to be understood. Now is the time to understand more, so that we may fear less.”       Marie Curie

 

Day 89 – Nervous

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Day 90

It was a pretty awesome weekend!  Saturday Kat woke me up about 7:30 and we showed up at the Jacksonville Gem Society about 9:15 for a fun filled play day under the tutelage of Heather Furman.  We explored the world of glass and heat.  The class was an introduction to fused glass and anything else we could think of.  We designed, cut glass, used torches to make spirals, dots and beads, sluff with a kiln and a bunch of stuff that I have already forgotten.  We did not finish up until 5 and we will get the finished product soon.  There were 7 of us in the class and we had a ball! We came home and Kat fixed this wild Chicken Parmesan Pizza – great stuff!  We can talk about taste and appetite for a minute.  I am have a small appetite and am currently at 162 lbs. My taste is about 80

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Chicken parm pizza

percent there some things are closer than others. Peanut butter and grits are still my favorites.  I have been consistent in my weight for awhile and still drinking Ensure, protein and herb smoothies (mushroom blend, green blend, turmeric, hemp seed, chia seeds, egg white protein and macaboost) and getting in 2000 calories a day and I’ve been experimenting.  I bought some Publix spicy wings today and baby they lit me up!  I was washing them down with milk and my head was sweating, sweet Jesus heat is magnified!  I ate 4 and that’s all I can take, I’ll have to take the rest down to Uncle Tom and Aunt Pie.

The downside to the great day Saturday was a lost Sunday.  We went to bed early and I slept until 1:00pm, ate lunch with Kat, read on the patio for a 1/2 hour before napping, until 5:00, ate and we were in bed by 9:00.  Today I slept until one, but was able to run some errands and feel pretty good tonight.  I did get out for a walk and the blooms are gorgeous.  When you are grateful for your day it is so much nicer and easier to see the world around you. I am so blessed, a God of my understanding, wife, family, friends, life there is nothing else I need.  There is some goofy stuff I want but if I’m supposed to have it  – it will show up.

The nervous part – tomorrow is the big reveal.  I see Dr. Dagan at 10:00 to find out if we

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The love of my life!

got this on the first shot, then I see Dr Ilene for my 1st physical in the afternoon.  It has already been 3 months since the last treatment.  Lots of bitching, sleeping, weird experiences, but I have been carried and loved like I never expected.  The real thing is that I’m curious, I know that whatever the news is it will be what it is supposed to be.  God has a plan and the outcome is really unimportant, what is important is my reaction  to the news.  As my lovely, but smart-ass, wife responded to my inquiry – “What if we didn’t get it? “You go back to treatment – duh”

Don

LESSON OF THE DAY –  “We can easily forgive the child who is afraid of the dark, the real tragedy of life is when men are afraid of the light.”   Plato

 

Day 61 – Huh?

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Day 61

2 months since the last treatment – what a blur!  I wish that I could tell you I was better, and I know that I am, I just don’t see it or feel it.  I know that I am better it is just a matter of a different set of evolving issues.  Days come and go highlighted by my time with Kat on the weekends and visits to yoga and the weird symptom of the week.  We did have a visit from my niece Abby. She was in town visiting from Oregon and came over last Wednesday to dabble in alcohol ink, do a bit of wood burning and catch up with her crazy ol’ Uncle and Aunt.  We must have been pretty intriguing because she ended up spending the night. This weekend Kat and I walked together with our buddy Finn.  Jan and Albert went with our friends Julie and Ham to go zip lining over around Ocala and left our buddy with us for the day.

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Abby at Ink Play

I know all of the reasons – cold weather, cloudy skies, rain, the need to sleep, healing, fewer daylight hours, and a propensity toward depression, but I realized that I am depressed and knowing all the reasons doesn’t change the reality.  Now I’m not in a place where I would consider harming myself, but just in a state of general funk, all that I seem to do is just sleep, eat, treat and repeat.  It is strange place for me to be, especially when I don’t feel good.  I find myself second guessing every decision.  When I roll back over in bed at 9am is it because I’m still tired or that I don’t want to get up.  Am I too tired to go to the shop or just depressed? Am I cold or feel the need to crawl under a blanket on the couch?  Now my decision is usually bolstered by my ability to go to sleep but that just makes me want to question why.  Familiarity to the disease and not willing to go there is one of my defense mechanisms and usually results in grasping for support.  1st act was reaching out to my friend Sam who went through this same cancer several years ago only to be reminded that we are all different and I am where my body is supposed to be. Friday was my monthly phone conversation with Chris, my OPTUM Health nurse.  We spent some time talking about where I was energy wise, what I can expect and how do I measure up – you know me Mr Competition.  I always struggle when we have these conversations, because it is always predicated on the premise that we are all different.  Then they tell you you are well and that some people don’t get to where you are for a year!  Sweet Jesus find me a cliff if I felt like this for a YEAR! – Enter FEAR!!  But I did buck up and told her that I was beginning to feel funky and a bit depressed. Her first question – “Are you taking your anti-depressant?”  Oh HELL YES! I would sell Sydney to make sure that I have my Pristiq.  The second was “would you like to talk to one of our counselors? Duh!  After the call I immediately scheduled an appointment with my Therapist Louise who got me through Sally’s illness and death. As a final step I logged on to the American Cancer Society’s discussion boards and chatted with people who are going through the same treatment and recovery.  And as I suspected, I am just where I am supposed to be.  There are people doing better and some not so good but we all understand the mental and physical torture that we are going through. And you can give some tips to the folks that are just starting.

Have you heard it before?  Problem + Action + Prayer = Relief.  So simple yet so elusive, but it works if you work it.  The questions begin to disappear when I admit that I have a problem and seek to relieve it.  Yes it is too cold to go to the shop so do your tax preparation, yes you are tired from your walk take a nap. And from Kathy, a week is too long to wait between posts you do better when you talk about it.

Don

LESSON OF THE DAY – “We need quiet time to examine our lives openly and honestly – spending quiet time alone gives your mind an opportunity to renew itself and create order.”        Susan Taylor

 

Day 41 – The Beat Goes On

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Day 41

So much has been going on – so little time, mea culpa for my absence.  We left off last Friday on my birthday and I am so glad that it is over and I can get back to some normalcy.  The next celebrations are my mother’s and sister’s birthdays February 9th and 11th and I have already bailed on those festivities.  Jan and I normally head to Louisville for the big occasion but I am going to forgo the plane trip, infectious winter diseases, cold weather and a week of running around for a boring but safer and less stressful week at home.  I will make the trip when I have a little more energy and a stronger immune system.  Saturday we both slept until 11 then got up to go pick up the truck and as with any automobile adventure it was a disaster.  Before we left Kathy transferred money to the checking account and away we went.  Well she drops me off, kisses me goodbye and heads for home while I stroll in to pay Ted and pick up the keys.  I get to the counter, Ted rings me up, I swipe the card and declined.  I say we just transferred the cash and Ted suggests we try it as credit and you guessed it declined again.  So I sheepishly ask if I’m okay until Monday  and of course I am because the Mercury keeps Tubel’s afloat and they don’t even wants me considering going anyplace else.   So with keys in hand and spring in my step I glide out to the truck, open the door, wallow in the magic of sitting in my own vehicle, a free man – no longer dependent on the whims of others to transport me, I turn the key and nothing, nada, no bells, dings or juice in the battery.  So back into see Ted who sends out the mechanic to jump me. As he is jumping the battery the mechanic says “you know you ought to consider replacing that battery soon it’s getting kind of weak” – you would be very proud of me for not raining on his parade – its like you had the *@$% truck for a week, I spent $2,600, why didn’t you just put in a stinking battery???? But I just thanked him for getting me back on the road shook his hand and drove home happy and free.  Oh and after a call to Wells Fargo, I found out I have a $2,000 daily limit and without blowing a gasket nicely asked for it to be raised.

That being handled, we came home and got ready for a birthday dinner at Picasso’s with Albert, Jan, Will and Jessa.  We had a wonderful meal and a terrific time, but before we were done I was ready to fall into my plate!  Kat and I came home, sat on the couch for a bit and laughed about the day.  Needless to say the bed was a welcome respite, so much so that I slept until 3 the next afternoon – and if that wasn’t enough I was back in bed by 9.

Monday, Kat woke me up about noon with a phone call and I immediately went into a funk over all this sleeping.  I started second guessing the whole healing process and what I am going through, well it was short lived.  I called Carlene at the Center and right off the bat she is surprised at how good I sound and I launch into the yeah I sound good, but should I still be sleeping 12 hours a day?  Well, when she quit laughing, she told me she wouldn’t be surprised if I wasn’t sleeping more.  She told me that if was still consistently going on in 6 months we would have a chat, but even then the 12 hour night will often be in my repertoire.  Crisis abated  I worked on some woodturning stuff and got ready for our meeting that night.  It was good to see the crowd and begin to think about woodturning again.  I really miss being in the shop with the smells, the creating, the shavings and the feeling of accomplishment when a job is done.  It will come, but the warming days bring on the anticipation.

Today I got up at 6am for doctor appointments….wooohooo!  It was really good timing because I had Dr. Moy my the ENT and Dr Trish Andrews my dermatologist.  Dr Moy scoped me and checked my ears and found nothing out of the ordinary and several things on the good side.  He says that I am healing well and that I look terrific.  The staff each sat a minute with me and shared that they were all worried and wanted to call to check on me but were so happy that I am doing so well.  It was very humbling and brought tears to my eyes that in some way I have become a part of so many peoples lives through this journey.  I finished the day with Dr Trish who told me the ears, the pealing skin and all the other funky things happening to me are just unfortunate reactions due to having my body pumped with radiation and chemotherapy and that eventually it would all clear up – then she smiled as she froze 3 spots on the top of my head.  Pre-cancer from sun exposure so wear your hat and sunscreen.

All and all it has been four days that have become so familiar in my life and yours. So familiar that I don’t see the forest for the trees all the time.  I forget that day to day this is all about cancer.  Diagnosis, treatment, healing and hoping that we got it.  Food, sleep, ups, downs, people, places, regimes, pains, peeling, are just the things we do for a cure.  Birthdays, Christmas, New Year, love, family, friends, broken trucks, broken lathes, and jobs are the things we fight it for.  God continues to bless me with hope, help, love and understanding – wonderful friends to pick me up and help me fight – a family committed to the cure, and giving, loving wife to hold my hand and comfort me.  And that God of my understanding to guide me.  Thank you.

Don

LESSON OF THE DAY – “Faith ultimately can’t be argued; faith has to be felt.”

Steven Colbert