DAY 578 - Day 477 in Recovery Paradise

This time a year ago, I was in a good recovery mode, but still not very strong. This year, it seems that I am stronger and in better shape than I have been in a long time. Perhaps, it is just relative to how down and out I was after treatment, but perhaps not.

When I first started my chemo (3) and radiation (35), I was told that it would be a good year in recovery. Having been healthy and athletic my whole life, it was pretty inconceivable that I couldn't bounce back more quickly than that. Although, I got stronger over time and was back at work in 6 months, it did take an exceeding long time to say "I am fully recovered from the treatments." At my lowest point, about Sept-Oct 2008, I could barely walk and was sick most of the time, however, I now have more energy than most people half my age and I sincerely appreciate that gift.

Christmas went well this year, and savored the greatest gift of love and family bestowed upon me once again. I am glad I was here to enjoy it. My sons (mid 20's)and grandson came over Christmas Eve for a short visit. I got to enjoy the joy of Christmas morning with my wife and 11 year old daughter. This is the year I kicked in with my start of the Legacy Gift. I gave each son a photo album of his life with me from day of birth through moving out on their own. Whereas the first 60 photos were of each son individualy or with me, the final few pages were of me and all 3 boys or just the 3 brothers together. The last 16 photos were of their connection to family history. There were pictures of me, my dad, my grandfather, and my great grandmother (4 generations), etc. It was tough to wade through many,many hundreds of slide and photos and pick the best 80 for each boy. So, I put the top 350 photos on a cd and stuck in on the inside back cover of the photo album. I have one for my wife and daughter in progress.

A tough joke in my tonsil cancer group, is that we will beat this thing and strive to live long enough to die of something else. That is how we will win. My goal is to clean up a lot of loose ends and cross some things off my list. I don't have any burning bridges to fix, but did pass on several hundred photos from the past to my son's mom this holiday also. It has been 20 years since I had touched those photos and hope she will enjoy them. I don't exactly have a bucket list of places to visit, as I have had the great fortune to have done my travelling and living on the exciting edge when I was younger. I have, however, spent 40 years accumulating "stuff" and now am motivated to divest myself of most of this "personal stuff" while I still have a say in it. I remember going through my Mom's "stuff" with my sister ten years ago and we still have boxes of unresolved "Mom's stuff" it in our respective garages. I do not wish that on my sons. Most of my "personal stuff" holds only value to me and I am sure it would be split equally among eBay, Goodwill, and the dump. My first and bigget goal is accomplished with the photo history album for my sons. I have more to go and will build on it, but the basic task was accomplished. I also made a small dent in "Garage Hell," Christmas Eve, by unloading a tool box and some hand tools to my eldest ( as I have at least 3 of everything) and a boatload of extra spices from the kitchen to my youngest.

I joke that when I go out, I will have worked my way down to owning only a bamboo mat, a single orchid in a handmade vase and 3 small stones ( I have no idea what the significance of 3 small stacked stones is, but it sure looks cool). Chasing Zen. Since I will do this task in my own style, I have dubbed it the "Zen Bob Way"...which, always causes me to smile.

"Nothing can match the strength of those whose lives have been shaped and forged through challenging and overcoming hardships. Such people fear nothing. To cultivate such an invincible core is in itself a victory. It is also the greatest benefit. Those that can succeed in this endeavor will savor unsurpassed happiness"......Diasaku Ikeda

"I Will Survive - Gloria Gaynor

DAY 569 - Day 468 in Recovery Paradise

I have been an active participant in a Tonsil Cancer Support forum for quite a while with many others (mostly US and England). One of our own, Brooks, passed on this last week and we heard from his spouse in a very meaningful post about staying strong to the end. We are all planning a 'virtual' New Year's Eve celebration, where we all will have a photo taken "toasting another year on earth" from whereever we are around the world and have a technology savvy member morph it into a "group" paragraph. Should be memorable.

I have mentioned before how this past year's cancer diagnosis [526 days] was really a blessed opportunity in clever disguise to encourage me to refocus on the elements of my life that are truly important.

I have created a personal "Legacy" blog to share some of the interesting experiences I have had in this long wonderful life. For my children, my children's children and beyond, there will be a bit of me in their lives, long after I am gone.

I have been reading a business book called "12 Choices...That Lead to Your Success" by David Cottrell. The 12th choice is the "Legacy Choice - Your Gift". Here is a line in that chapter: "Many successful men and women hold in common the choice to leave behind a legacy that will live on long after their last breaths".

I have acquired a good amount of experience regarding small business and non-profit organizations over the years, some by doing it all wrong and learning the hard way. I have had grand opportunities and great mentors. Starting in January, I am launching my newest blog Small Biz Tips - Robert Welton to provide tips and suggestions for small business and local non-profits that I dispense everyday in my work with the chamber of commerce.

Prior to my Cancer diagnosis, I, like many others, had lived a good full life, but without much serious consideration about what I had to contribute, to give back, to pass on, etc. of the benefits of my experiences, relationships, some winning and some losing, etc. This past year's experience has provided me a curtain call opportunity to put things in perspective and in some sense of order before the last performance.

Last quote from the 12th chapter of the "12 Choices" I memtioned: "What is your legacy? What marks are you leaving along the path for the next generation?"

I am newly inspired and with appropriate homage to Grace Welton who inspired my love of poetry and to poet Robert Frost...

'The woods are lovely, dark and deep,
But I have promises to keep,
And miles to go before I sleep,
And miles to go before I sleep. "

DAY 562 - Day 465 in Recovery Paradise

Wow! What a difference a year makes.

I posted on December 5, 2008 that I was slowly getting back my ability to eat. Lise and I went out to dinner during one of Sarah's Nutcracker rehearsals and I was only able to eat a few beets on a small salad. I didn't enjoy the chocolate dessert mousse, but thought I might start to get my taste for chocolate back.

I was still drinking Ensures and having small bites to get back to the joy of eating. I was tired a lot and still took naps. My hair was starting to grow back. My observation was that "All-in-all, things are getting better every day".

My hair did grow back, covering the new bald spots caused by treatment, but sadly enough did not fill in the bald spots I had prior to treatment...ha...and it grew back darker. Still don't like chocolate, so that is probably a done deal and won't return.

It has been just over a year and I am able to eat just about anything, unless it is really dry...like scones. I don't get tired so much, but still have issues with the corners of my mouth cracking and I wake up every morning with a dry mouth...probably because of breathing through my mouth at night.

Recently, I had seen my regular doctor regarding a sore throat and he observed that my voice box was raw and I needed to give my voice a rest. That is tough to do when you "talk for a living"...with a 30 calls per day rule. After this week, I will take two weeks off from my job and drink lots of hot green tea and give the talking a rest.

"Don't count the days, make the days count"....Muhammad Ali

DAY 512 - Day 415 in Recovery Paradise

Just finished by last quarterly check-up with radiologist yesterday. I was scoped through my nose down my throat (that was a wild ride for sure). Got a visual "all clear" and am scheduled for another CT scan around December. Oddly, now living in 4 month increments.

A year ago, I had my spouse write my daily blog and my post to the forum. My mouth got so dry and throat blocked, she would often guess (did a good job) at what I was trying to say and ask me - "How does this sound? Is this what you are trying to say?"...ha

I had wine and garlic chicken pizza tonight at great Italian restaurant with my family. No way I could have done that this time last year. It would have been me sipping water and watching and wishing.

As odd as it sounds, life is better now that it was before the diagnosis and it was good then. I appreciate EVERYTHING now. Daily, I wear a yellow "Live Strong" wristband to remind me of my CANCER and my new life commitments (as I truly sometimes forget it ever happened) next to a blue "Can't Change It" wristband to remind me to positively handle the things in my life that I can't change and an orange hairband (belongs to my 11 year old daughter) to remind me to maximize my responsibility as a husband and father. They accessorize really well with all my suits.

A friend of mine has a blog and a book re: "Can't Change It" that deals with the parts of life you can't change in a positive way. Ten years ago he was hit head-on by a drunk driver and declared DOA. A miracle recovery and physical rehabilitation has him now as a successful author and national motivational speaker. His unforeseen event turned his life totally around. He was a Cutco salesman one day and now motivates thousands. He used his "Unfair Opportunity" to totally change his life.

If our lives were a Nintendo game, we are now getting an extra turn and a chance to go to the next level. How many times have we all heard someone on the news lament that they lost a loved one and never got the chance to tell them one more time that they loved them?

Live not as though there were a thousand years ahead of you. Fate is at your elbow; make yourself good while life and power are still yours.
- Marcus Aurelius Antonius

DAY 510 - Day 413 in Recovery Paradise

1 year ago today I wrote:

"I think I may have the flu. My stomach hurts and I feel nauseated with a bit of a headache. I managed to get four half-meals down today. That's 1500 calories. My last visit to the doctor ended up in me taking even yet more pills. If I didn't know better, I'd say my body is falling apart. I take pills for a heart condition, eye drops for glaucoma, pills for acid reflux, nasal spray and pills for my sinus problems, fluoride trays for my teeth, and dealing with recovery from chemo and radiation treatments for my cancer. Life is still good, and I appreciate what I have, but it would be nicer to feel better."

October 22, 2009 - had a fabulous day today. Felt great all day. Talked on the phone all day (yes, I get paid to do that) and ran an after-hours business mixer for the Chamber for 100+ business people. Had a glass of wine and a meatball sandwich. What a difference a year makes.

I still connect with my Tonsil Cancer on-line Forum. It was a tremendous asset in the darker days a year ago. My contribution tonight was:

A lot of us on this forum and in this unfortunate predicament,are in our 40-s to 60+ (All that wild living back in the day). Here is a song written by the Beatles 44 years ago (1965) -time flies when you are having fun - that still holds much relevance to all of us.

I listened to it daily during the darker days of my treatment. I had it on a CD with the Beatles' "Yesterday" [when all my troubles seemed so far away} and Bob Dylan's "Knockin' on Heaven's Door", Bobby McFerrin's "Don't Worry, Be Happy" and AC/DC - "Highway to Hell" [quite an eclectic mix, eh?] -that I had the radiation techs play while I was strapped down for treatment.

It was 15 minutes of barely controllable claustrophobia and I soon realized the time slot was equal to about 5 songs. "HELP" was the last song and when the CD got to that song, I knew I was almost done and could hang on - just embracing the words.

Thought I would share the irony of the words if you don't know it. I had been very independent and rarely sick my whole life. It soon became a theme song for me to fully appreciate my wife and friends and how incredibly lucky I was to have them around."

HELP - THE BEATLES (1965)

Help, I need somebody,
Help, not just anybody,
Help, you know I need someone, help.

When I was younger, so much younger than today,
I never needed anybody's help in any way.
But now these days are gone, I'm not so self assured,
Now I find I've changed my mind and opened up the doors.

Help me if you can, I'm feeling down
And I do appreciate you being round.
Help me, get my feet back on the ground,
Won't you please, please help me.

And now my life has changed in oh so many ways,
My independence seems to vanish in the haze.
But every now and then I feel so insecure,
I know that I just need you like I've never done before.

Help me if you can, I'm feeling down
And I do appreciate you being round.
Help me, get my feet back on the ground,
Won't you please, please help me.

When I was younger, so much younger than today,
I never needed anybody's help in any way.
But now these days are gone, I'm not so self assured,
Now I find I've changed my mind and opened up the doors.

Help me if you can, I'm feeling down
And I do appreciate you being round.
Help me, get my feet back on the ground,
Won't you please, please help me, help me, help me, oh.

Bob/California

DAY 496 - Day 399 in Recovery Paradise

One year ago, I wrote:

"I still have the sore on the right side of my tongue, but it's getting better. I think it is healing because of the salt water rinse I gargle with 5 or 6 times a day. I think it is a canker sore and not related to thrush. I still am taking the thrush medicine and the rest of my mouth/tongue feels better. I still have a bit of a sore throat, however. The mucus was heavier and more apparent today than in the past few days. I also had more dry mouth today. Weird. I traded off between dry mouth for awhile and then mucus. I had most of my meals by mouth today, using the Instant Breakfast mix (375 calories) (2 cans each meal), but used the tube for the other brand, since it tastes like cardboard. It only has 300 calories per can, but it has fiber, unlike the IB."

I had commented on being up to 148 lbs. trying to get to 150. Am down to 142 and know that I am at my ideal weight. Went up to 144.5 last week (half & half + ice cream smoothies and peanut butter and honey sandwiches every night) and feel a bit bloated. Will stick with fruit smoothies and try and stabilize around 142.

Mouth still dry a lot. Had blood drawn yesterday and they had a hard time getting the vial full. Told me I had to drink for water. I am trying to add an extra liter of water a day to my diet. Today is Lise's birthday. Sarah and I made homemade Love Coupons for her. She is a great caregiver and I give thanks everyday for having her in my life.

I subscribe to a tonsil-cancer on-line forum. Some of the people that participated last year are not going to make it. Often the posts are of people’s successes, but lately have been dotted with posts from caregivers notifying the rest of us that their spouse had their cancer return. That is the unfortunate reality of this disease.

Love the time you have, tell everyone you love them, let the little things slide and know that just about everything that happens is little.

Quote for the day: "Every man dies. Not every man really lives." ....William Wallace

DAY 491 - Day 394 in Recovery Paradise

My post from one year ago:

"My wife Lise comes home every single day for lunch. It's the highlight of my day. After lunch we walk around the block to get some exercise in. She makes me do it, even when I don't feel like it. It feels good to make lunch and have it ready for her. I do the same for dinner and have it ready for Lise and Sarah when they get in at 6. This is definitely a positive change over the last month."

I couldn't swallow anything - had to be fed through a feeding tube. I gagged constantly on the mucus. I could barely drink water.

Now I am about 1 year plus a month post treatment and although my mouth is very dry this morning...I did have a Subway meatball sandwich last night...so often, last year, I would sit and sip water and watch my wife and daughter have one of those after Sarah's ballet practice...I wanted to be able to eat one so badly...a good portion of the pleasure now, is because I CAN eat it. I never had a meatball sandwich before this "inconvenience" and never even had a desire to. I eat pretty healthy, but occasionally have a burger or meatball sandwich just to see if I can. Dry bread is still out. Spicy is still an issue and the "spit pills" make me sweat out the top of my head like I had a double jalapeno.

A year ago I was holding up a drip feeder on my feeding tube while watching the "Iron Chef" on the food channel...thinking about that meatball sandwich...now I have double the pleasure because I CAN eat one.

Quote of the day:
"It is the Law that any difficulties that can come to you at any time, no matter what they are, must be exactly what you need most at the moment, to enable you to take the next step forward by overcoming them. The only real misfortune, the only real tragedy, comes when we suffer without learning the lesson." -- Emmet Fox

DAY 489 - Day 392 in Recovery Paradise

I posted this recollection tonight on the cancer forum I participate in. Someone had posted a question to the group about the procedure for having one's feeding tube removed. Everyone chimed in with their story. This is mine - and I must say - it was very different from anyone else's...ha.

I couldn't wait to have my tube removed. I felt like I was a bit player in the movie "Alien". I waited too long to have mine installed - two weeks post treatment. I had told myself I was strong enough to make it through without the tube - I did, just for the length of treatment, but not for the post treatment...as they say- the 2-4 weeks post treatment is the worst. I had lost so much weight and couldn't even keep water down, let alone protein drinks. I had to go into the hospital for 3 days to hydrate and be weaned off my warfarin (blood thinner for heart issues) and then had an operation to install the tube.

I figured it would be the same process to take it out. They took me back to a curtained-off cubicle in a post-op recovery room (about 10 cubicles in all). We waited for almost 45 minutes past the scheduled time and the doctor never showed. The nurses kept apologizing and paging him and confirming he was somewhere in the building.

Finally, I got up and put my shirt back on to leave, as I had to pick up my daughter from school. As we are walking down the hall, the doctor comes running up, coat flapping, out of breath, apologizing and telling me he could do it now. I told him we were out of time and he responded that it would only take a minute. I couldn't see how it would take an hour to put in without the same procedure in reverse. He didn't even have me take my shirt off. I laid down on the recliner; he says "This may smart a bit" and YANKED IT OUT! It made a huge snapping sound like a giant rubber band breaking. Everybody in the room could hear it. He put a bandage over it, taped it down, said "Good Luck" and disappeared down the hall. I was stunned. Maybe 10 seconds, from unbuttoning my shirt to sitting up and buttoning it back again. Now I have two belly buttons. My daughter says it is because I was "born again" and this is my second life. I like it.

Oh, by the way, it really did "smart a bit", but now is just a good story.

DAY 488 - Day 391 in Recovery Paradise

I sincerely recommend a diary/blog for anyone going through interesting times in their life. The one thing that any of us can count on is that change will occur. A blog, page or post is a snapshot of your soul at a moment in infinite time. To peruse it later when you have popped out the other side is enlightening.

I started this blog post the day I was diagnosed in May 2008. My posting for September 30, 2008 - one year ago today - featured two of my favorite quotes and some inane blather about a sore throat, an infection in my feeding tube and throwing up. Wow. I am glad those days are in the past. Here are the two quotes that are much more meaningful to me a year later:

"Make the most of yourself, for that is all there is of you." Ralph Waldo Emerson

"I've never quite believed that one chance is all I get." Ann Taylor

Song of the day: Tom Petty - I Won't Back Down

I still follow the tonsil-cancer-support@googlegroups.com group. Now that I am mostly on the other side of this interestingly hellaceous experience, I can offer up comments from the past as others did for me a year ago. Here is my post to a new member of the group commenting on the importance of caregivers in the road to recovery:

Big KUDOS to the reminder that we give EXTRA credit to the caregivers. I don't know how I would have handled it without incredible positive support from my wife and daughter. They had to live with my throwing up and shuffling back and forth like I was 100 years old (and a bit of whining from time to time). They were always upbeat and REFUSED to allow me to feel sorry for myself.

Positive affirmations, constantly repeated, as well as something to look forward to as a reward to making it to the other side of a very stormy sea (for me it was a hot air balloon ride - my sister sent a HUGE poster of a giant hot air balloon over the Napa Valley to pin up on the wall) only helps, just as the opposite of feeling sorry for yourself just makes a bad thing worse.

You will see a repeating theme here of REALLY appreciating life, love, sunsets and bread so much more when you pop out the other side of feeding tubes, shakes and liquid meals that you can barely keep down.

There were many posts last year that I would read, read and re-read to reassure myself that, I too, was going to make it and not only get my life back, but hopefully exchange it for a much better one. I was lucky, as I have had a very full life, but as we all have, had some undone tasks of a personal nature. The value exchange for the most precious thing we all possess - TIME - has changed markedly. I get up first every morning and make breakfast and coffee for my wife and take my daughter to the bus stop everyday and cherish those 10 minutes we share each morning before I head off to work. NEVER miss an opportunity to tell those around you how much you care for them and appreciate them and how LUCKY you are to have them in your life. TIME is a gift. Now that we all have been reminded that our time is not infinite, we can do a much better job of distributing what we do have.

I often think -What if I was hit by a car that morning instead of hearing my doctor say "You have CANCER"....I never would have gotten the chance to express my love and gratitude to those around me. In a way, the doctor's statement was a gift...not only to those around you that are special, but also to YOURSELF. Those "I will get around to it later" days are HERE! Eat off the good china, buy the expensive shampoo that is never on sale, have the espresso after dinner or even go on the balloon ride. When it is your turn, go out with a grin remembering time well spent, with no regrets of not having used your gift of a bit more TIME, a bit more wisely.

You will survive this. Your life will get even better than it was BC. We have been given the gift of the opportunity of well-used time. As you sip your Scandia Shakes and hold up your feeding tube til your arm goes numb, spend your thoughts, not feeling sorry for yourself, but rather feel a bit sorry for those that will live the same length of time as you, but waste the precious time we do have and NEVER got the wake-up call.

Bob

DAY 487 - Day 390 in Recovery Paradise

One year ago today (September 29, 2008), I posted:

"I fixed dinner for the family tonight: roast beef deli rolls, corn-on-the-cob, salad and peaches and strawberries for dessert. I had my feeding tube. Not quite the same. I can still smell everything. I miss eating. When the saliva comes back, I would love to sit down to dinner with my family. My mouth is still a bit sore and my throat is sore. The meds are slowly catching up."

Song of the Day: Creedance Clearwater-Long As I Can See the Light

One year later:

Tonight, I made grilled salmon, homemade mashed Yukon Gold potatoes, sliced heirloom tomatoes and fresh beets from our new organic farm delivery service (first delivery today) and garlic toast. I dined with my family and ate it all. What a difference a year makes.

Then.......

We all went out for ice cream to celebrate the news that Sarah, age 11-6th grade, was made principal chair of the cello section of her school string orchestra...five cello players and her teacher placed her number 1....also is currently making straight A's. Woo-Hoo.

A year ago I couldn't have eaten dinner or gone out for ice cream. It is good to be here.

Life is good.

DAY 451 - Day 354 in Recovery Paradise

Woo - Hoo - just 4 more years and I just might win...

Thanks to my sister Sharon Chamberlin, I took my 62 Birthday Cancer-Victory Hot Air Balloon ride last weekend with my wife, Lise and my daughter, Sarah, out of Windsor, California. It was quiet, peaceful, and unforgettably beautiful. Nice soft (really soft- like stepping slowly off the bottom step of a set of stairs on to thick cushy carpet) landing in a field about 10 miles from where we launched...chase vehicles followed the flight. Followed up with a commemorative flight pin and certificate and a quiche-champagne breakfast in the vineyards of Kendall-Jackson Winery.

CT result

To:

Robert L Welton

From:

NATHALIE TUYET-NGOC NGUYEN MD

Received:

8/25/09 9:41 AM

Dear Mr. Welton,

Your CT scan results are attached below. It looks like you've responded well to treatment. Please let me know if you have additional questions.

Regards,

Nathalie T. Nguyen, M.D.
Radiation Oncology

CT HEAD AND NECK WITH CONTRAST

** HISTORY **:
Left-sided tonsillar cancer status post treatment.

Comparison: Recent PET/CT from 8/2/2009, prior PET/CT from
6/15/2008.

** FINDINGS **:
Technique: Axial images of the head and neck were obtained after
administration of Visipaque, hundred cc.

Significant artifact is identified related to the dental hardware.
However there is significant improvement with complete resolution
of the previously identified left level 2 lymph node which
measured up to 2.5 cm in the prior examination in maximal short
axis dimensions.

Additionally there is less mass-effect in relation to the left of
the with no definite enhancing mass in relation to the left of
the. However there is mild asymmetry in the soft tissues in
relation to the base of tongue on the left side along the anterior
margin of the left tonsil. (Axial image number 37). This likely
represents posttreatment changes. No corresponding metabolic
activity was identified in the recent PET - CT scan in this
region.

Significant mucosal disease in the left maxillary sinus with
mucosal thickening. Mastoid air cells are clear. Minimal mucosal
disease noted in the right maxillary sinus is well. Evaluation of
the lung apices is unremarkable. No significant lymphadenopathy
noted. The region of the supra, infraglottic larynx, epiglottis
is grossly unremarkable. The parapharyngeal fat is normally
preserved. The deep spaces of the neck are unremarkable.

** IMPRESSION **:
Significant improvement when compared to prior PET/CT from
6/15/2008 and findings in the current contrast enhanced neck CT
are concordant with the recent PET CT report from 8/2/2009.

2. Interval complete resolution of the left-sided level 2
metastatic lymph node. There is no interval development of any
new foci of lymphadenopathy.

3. There is limitation of evaluation of the oral cavity secondary
to significant dental artifact, however there is less mass effect
along the left base of tongue, and left anterior tonsillar pillar
when compared to prior examination suggesting significant
improvement. There is no residual enhancing mass. Posttreatment
changes are noted in this region.

4. mucosal disease along the maxillary sinuses bilaterally left
more prominent compared to the right.


LAVANYA KALLA MD