On May 29, 2008 I was diagnosed with Tonsil Cancer. I created this blog to share my thoughts and sequence of events for family, friends and others that are experiencing the same "Inconvenience in Life." I have been blessed with a great life full of wonderful experiences, a caring family, a fabulous wife, outstanding children, good friends, and satisfying careers. Each day is truly: Another Day in Paradise.
Thursday, July 31, 2008
DAY 64 - Another Day in Paradise
Yesterday was the Semi-Halfway mark for my treatment plan. Day 16 of 35 of the radiation (today) but the second of my 3 chemo treatments. They give you lots of pills and I-V injections to fight nausea for the chemo. You sit in this huge over-sized lounge chair (just right for Hulk Hogan), hook you up to an I-V and install 3 drip bags that take 1 hour each. The first is medicine to fight nausea. The second is Cisplatin. This is the cancer-fighting drug. The third bag is a saline solution to keep you hydrated. Actually feel pretty good upon leaving - the next two days are not as cool, but ok. I had my daily radiation in the a.m., so I could make this 3-hour session. Had to put my tail bone on a rubber pad to be able to lie down on the metal tray. Improving, but still sore after body surfing down the stairs this week. Today I put a c-shaped neck cushion under my tail bone. That helped a lot.
August 26 is the last day of radiation and the 20th of August is the last day of chemo. This stuff is like a time release effect....so, other than not having to go in for treatment anymore (plus, plus, plus), the effects remain in place for several more months. I am not sure when I will start to get my taste buds back and can eat REAL food. I am hoping for Thanksgiving, but it may be Christmas (I hope). I go in for a C-SCAN to see if all this worked 3 months after treatment stops...just about Thanksgiving. That would definitely be something to give thanks for.
Dinner tonight was poached salmon with chive-parsley butter sauce, fresh tomatoes from our garden with goat cheese, steamed butternut squash, sliced fresh peaches and apples and cheddar cheese cubes, with fresh chilled watermelon for dessert. That was for the family. I had room temp. clam chowder run through a blender and Gatorade. Now you know how anxious I am to get my taste buds and swallowing mechanics back. My pleasure reading at the doctor office is the latest recipes from Sunset magazine.
Note: Saw two chemo patients in their 20's getting treatment while I was in. Another reason I am such a lucky guy. I have 60 years of great memories.
A song referral from my sister (who, by the way, dug up in my Mom's archives a slew of get-well cards from my third grade classmates, when I was out with the chicken pox.) It was all bound in decorative ugly purple wallpaper and she had cleverly pasted the word tonsil cancer over the words chicken pox throughout all the notes- about 20 cards. Very nice and a great nostalgia trip.
Peter McWilliams: "The simple solution for disappointment depression: Get up and get moving".
Song of the Day: Devo - Whip It
Tuesday, July 29, 2008
Day 62 - Another Day in Paradise
The third thing of bad luck comes in 3's happened. I already slipped in the tub and hit my head and totaled my car. Last night I was walking around in the dark about 2:30 am and fell backwards down the stairs. I am lucky I didn't break my neck or back. Had a huge knot about the size of an orange on top of my head wrenched my neck and my tail bone is sore as all get out. Caused quite a commotion and Lise came running down the stairs to find me at the bottom in the dark seeing stars. Many scoldings and ice packs later, I managed to move upstairs and get a second round of icepacks. It seems like I am trying to spice up an otherwise boring time.
My second chemo is tomorrow - have to have my radiation in the am to meet the schedule for the chemo at 11:30a. It was hard to lay down on the metal plate for the radiation as my tail bone is so sore. Had to shift from cheek to cheek with my head strapped down - could be a new dance move.
Am at the halfway mark for treatment. Good to have a benchmark. I am tiring of the whole process and have anxiousness to get to the end ( with good results of course).
Song of the day: Oasis - Falling Down
Monday, July 28, 2008
DAY 61 - Another Day in Paradise
Long day - routine is pretty set unless there are extra doctor visits.
Up early, do meds first, so they are in and dispersed if food comes up. Wait a bit, have bowl of really watery oatmeal and a glass of apple juice.
Work from home on my account until noon. Lunch is bowl of beef barley soup and glass of Gatorade.
Work on accounts until 2:20p and off to daily radiation. Need to be there for 3:15 appt. I take a different CD to listen to each day. You have 15 minutes in the unit and they will play whatever you bring. Today was B.B. King. The guy after me always plays Clapton. Maybe it has to do with the era of the patients at this time.
Eating is a chore. Being the chef of the family - I still perform my duties, but not as much fun in it when you can't participate. I dread meals. Dinner was pasta salad, fresh tomatoes from our garden, rolls, and a kiwi and orange fruit bowl. I had a strawberry instant breakfast and some more barley soup, very watered down and run through the blender. MMMMMMMMMMMM
Throat is sore and it hurts to swallow - nothing has a taste and you are constantly fighting the gag reflex. Other than that, it is a Bobby Flay gourmet meal. ha
Lost 4.5 lbs so far from 162 top weight before, when I could pound down the heavy calorie shakes. Now they gag me. Too heavy - no cream or milk works much, although tonight I had reg milk with the instant breakfast.
Wednesday is 2nd Chemo - a bit apprehensive. Hair started coming out today in little clumps in the back. Lise cut my hair really short to compensate for the raggedy look. Says I look macho--like Bruce Willis. Works for me! Live Hard with a Vengeance! is my movie.
My daughter named the new cruiser "Peach" because girls are better drivers and I won't get in another accident in Peach. So, there we have it. I guess it is Peach. Peach drove like a dream --first real drive since ownership.
Am acclimating myself to the concept of an uncomfortable year....
When I am on the other end of this, I am sending myself to chef's school in the evenings and weekends!
Song of the Day: Eat it-Weird Al Yankovic
Sunday, July 27, 2008
DAY 60 - Another Day in Paradise
Trying to fall asleep with the house full of 10 year old girls having a sleepover- finally got quiet about midnight- after my wife put CD lullabies on the stereo.
Slept until
Slept until
Slept until
The sleepover girls are up and giggling in the family room. My wife is trying desperately to grab 37 more winks…not working.
Bacon, pancakes, scrambled eggs and English muffins for 5 – smells good but none for me. Tried the Equate – nutritional shake and one piece of cantaloupe. All came up and continued with dry heaves. Now my ribs ache. Have to get something down- am trying tea and thiiiiiiin oatmeal. Working so far.
Listened to a couple of 10 year old group and individual meltdowns and recoveries so far. Not unlike adult office drama, just younger.
Got my morning meds down. Good news.
Treated to a multi-faceted talent show – mostly revolving around some aspect of High School Musica, Karaoke style.
Afternoon better – got some homemade thin soup down and some protein shake with juice- the mile base is too much mucus and gags me.
Got some work in for my job – big mixer coming up this next week.
Big week looming – have to see docs re: my fevered trip to ER last Friday and also have 2nd Chemo on Wednesday.
Lise fixed very thin soup and that seemed to work.
Watched Big Fish (good movie), and for a few hours I wasn’t me. Nice break.
Song of the Day: Nessun Dorma – Paul Potts
Saturday, July 26, 2008
DAY 59 - Another Day in Paradise
Slow day – still recovering from fever and my stay at the emergency room yesterday.
Was going to mow the lawns today, but will put it off until tomorrow.
Sarah had her birthday party with friends today at John’s Incredible Pizza – an all you can eat buffet with games and attractions for kids. I wasn’t up to the crowd and stayed home.
The girls came back here and watched the Hannah Montana 3D movie and a sleepover.
Still can't eat much. Had 1 bowl of instant oatmeal and some Gatorade for dinner and earlier, had scrambled egg and zucchini ... pretty much it .. .will try harder tomorrow.Throat is really dry, hard to swallow, gag reflex triggers easily.
Song of the day – The Beatles - You say it is your Birthday
Friday, July 25, 2008
DAY 58- Another day in Paradise
One of those good news - bad news - good news days.
Slept through the night for the first time in awhile - in the new zero gravity chair - like a cool lounge chair on a cruise. Lot of adjustment opportunities.
Feel achy all over -had a fever of 99 degrees when I woke up. Pounded down a couple of tylenols and Lise and I drove down to Elk Grove to see the PT Cruiser for sale. Very nice, very clean only 31 K miles. Got it.
Feelng cruddy- so Lise drove it home. That is how bad I felt. Wasn't up to driving my own new(ish) car home. Got home took temp - was 102 degrees. Off to the emergency room at Kaiser. Meds in - Blood out. Went in at 11a - got out at 5p.
Couldn't keep anything down except Gatorade.
Fixed dinner for everyone. Poached Salmon with butter and raspberry chipotle sauce, acorn squash and salad/garlic toast. I had gatorade.
My wife and her mom returned rental car and got gas for the new cruiser (silver).
Feeling weak, but the bad fever is gone.
Song of the Day: Peggy Lee - Fever.
Thursday, July 24, 2008
DAY 57 - Another Day in Paradise
Today’s Blog is rated PG13. Mainly for myself to remember and for those that really want to know the daily routine. It may not be as funny as some other blogs.
Most meds have worn off overnight. A/M routine begins.
ü Hack-up as much mucous as possible. Some blood. Everything raw. (Rah-Rah)
ü Try to get out mucous out of lungs and throat – can’t sleep flat - have to be elevated (Elephant Man). Zero Gravity Chair should arrive soon. (See Day 53)
ü Rinse mouth with salt water to dull some mouth pain and cut the mucous build-up.
ü Spray Cloraseptic throat spray (OTC) on gums and back of throat to minimally numb throat. This is uncomfortable but will start the med process.
ü Clear nostrils for improved breathing. Much mucous. Some blood. Maybe I have a cold too. So many trips to the pharmacy and doctors office and isn’t that where you can find the greatest concentration of sick people? Ha – not funny.
ü Go downstairs and make cup of hot (warm) tea (decaf) to sooth throat and melt away the mucous in my dry throat.
ü Swirl capful of “Magic Mouthwash” [LID VI/DIPHEN/MAG-AL OH/NY] around gums and swallow (now you know why they just say “magic mouthwash” )– this numbs everything: gums, roof of mouth and a petty fair job on the raw throat.
ü Raw throat now numb enough to swallow and take other meds. This stuff is like Lydocaine that the dentist rubs on your gums with a swab before they give you the Novocain injection to pre-numb you. In wine terms: 2008 bottling, heavy cherry medicine flavor – with hints of Lidocaine and conjures up favorite memories of lovely trips to the dentist – may induce gagging. It is a young beverage (as it is made fresh each month), yet not without humor. Pairs nicely with medications. Available locally through your favorite pharmacy. A bargain at only $25 a bottle as co-pay doesn’t apply. Expires at end of month and must be replaced. Refrigerate and keep chilled to approximately 45 degrees. Bon appetite!
ü Now can have the tea (Decaf Constant Comment and Peppermint mix with honey- make a pot – will be long day. Drink enough (1 cup) to cut phlegm in back of throat and open up numbed throat for swallowing.
ü Take 1 eye drop of Brimonidine in both eyes for Glaucoma
ü Take 1 capsule (daily ½ hour before breakfast) of OMEPRAZOLE (for Prilosec) 20mg for controlling acid reflux pain in stomach.
ü Take 1 tablet of PROPAFENONE (for Rythmol) 150 MG for heart arrhythmia.
ü Take ½ tablet of HYDROCODONE/ACETAMINOPH [Vicodin/Lortab] 5-500mg for pain, discomfort, and attitude.
ü Nasal spray – XCLEAR for relief of nasal irritation.
Exercise, shower, get dressed make breakfast for all. Ready to rock- Another Day in
Breakfast is a 1000+ cal shake [DAY xx] and fruit. Good to go until 11a or so unless there are doctor appointments. On a good day, I only have the daily radiation treatment in
Was going into work today, but overdid it at my stop into work yesterday. Talked too much (like that ever happens). Throat is very sore today – can’t seem to get it numbed and feel just on the edge of nausea. There is not much time between feeling like it and vomitus eruptus…not a thing for public view.
Worked on my accounts from home.ü
ü Take
ü ½ Vicodin and
ü 1 tablet of PROPAFENONE (for Rythmol) 150 MG for heart arrhythmia.
Note: soup ok bread/parmesan cheese tastes like snot. No can do.
Worked a couple more hours on new accounts from home.
Went out to dinner at the Spaghetti Factory. I had two bowls of soup. My niece came with us. She is a student at UC Davis.
Back home. Talked to Allen the internet car sales guy – he feels bad because we drove all the way down there and the car didn’t have A/C. Says he will give me a deal on a 2006 PT Cruiser at the same price as I got for my 2003 beloved PT payoff. Only 31K miles. Will drive down tomorrow and see it.
Got a big fever about 100 degrees. Some kind of infection,
Am going to bed early in the new chair – arrived: see DAY 53
Final med for the evening:
ü Take 1 tablet of PROPAFENONE (for Rythmol) 150 MG for heart arrhythmia.
ü Take 1 tablet of Lanoxin 125 mcg for heart arrhythmia.
ü Take 1 tablet of Warfarin (for Coumadin) 5 mg (Great SCRABBLE words, eh) to thin my blood to reduce heat attach issues.
ü Take 1 tablet of Atenolol 50 mg for heart arrhythmia.
ü Take 1 eye drop of Brimonidine in both eyes for Glaucoma
ü Take 1 eye drop of Lumigan in both eyes for Glaucoma
ü Brush teeth with special gel for radiation clients, Pronamel, as the radiation is bad for the health of your teeth and gums also.
ü Put on custom made dental trays over both upper and lower teeth with a special gel called Prevident to keep enamel on – radiation affects you teeth and gums – may have to do this until ht e cows come home – a new permanent nightly task.
Heading to bed early with Tylenol – major fever - feel like crap.
Song of the day: Jefferson Airplane - White Rabbit (
Wednesday, July 23, 2008
DAY 56 - Another Day in Paradise
Have been feeling pretty good the past few days - have been active. As I tell my friends and am 95 % good - everywhere except for my mouth and throat. Throat raw, gums hurt, no saliva (like putting a handful of flour in your mouth and having all your saliva dry up)............lots of thick mucous. Most of my accompaniment meds and preventative meds have kicked in - the ones that tell my head that I can swallow and not throw-up and the acid reflux pills are dong their job.
I was telling someone today that the feeling is like you had 4 molars pulled and the Novocain is wearing off, so you eat a piece of screaming hot pizza and the hot cheese sticks to the roof of your mouth and burns the skin off - you pick up a cup of boiling coffee swirl it around in your mouth and swallow it- not quite, but close.
I had used the gaining-weight-on-purpose metaphor - " like a pig in a feed lot" - the other day and had mentioned it at the dinner table - my daughter wanted to know what that meant - so I used the analogy of Hansel and Gretel - I was Hansel eating all the candy and fattening myself up. She got it. We did not talk about where bacon comes from.
Tomorrow is my daughter’s 10th Birthday – so all must be calm and not focused on me in any way.
I am off regular solid dinner foods now – a waste of good food. I am the cook and can still SMELL everthing - jut no taste. Tonight was Tortellini w/ Pesto sauce, garlic toast, fresh zucchini from the garden and pasta-spinach salad. I had peach slices! And a high-cal shake. MMMMMMMMMMMMMMMM.
Day 11 of 35 on the radiation treatments today. 1/3 down. They said the machine rotates around me and radiates the cancer in my neck and mouth from different angles to “coat” it with radiation. It seems smaller, but would like to see a picture to know this thing is going away. Have my second chemotherapy on the 30th.
Thought I was going to replace my much-loved, but oh so dead, PT Cruiser tonight- drove to a dealership about 35 miles away so see a 2005 model for sale in the right price range- only to find there was no A/C……it was 96 degrees today in Sacramento. This car needs to go back to the Bay Area where you can sell a car with no A/C. Still looking. Not satisfied.
Song of the Day: Rolling Stones: Satisfaction
Monday, July 21, 2008
DAY 54 -Another Day in Paradise
Only woke up twice- slept in bed all night and didn't have to sleep partially on couch. Hope for another night like that tonight. It probably only works because I finally bought the gravity chair to sleep in.-ha.
Throat very sore now. Mouth is dry. Have bulked up to 161.5 lbs.- wow - if I don't loose weight like they say - I will be over 200 lbs before I am done ( and die of a obesity heart attach - cruel irony). I may become FatBob the Blogger.
Built the ultimate calorie shake: 1 Equate Plus chocolate: 350 cal, 1 cup whole milk: 160 cal, 1 cup ice cream: 260 calories, 1 cup orange juice: 120 cal, 1 tablespoon Canola oil 120: cal = 1010 calories (like a triple bacon cheeseburger). I am supposed to lose at least 20 lbs...so we will see. The nutritionist says I can eat anything and everything...i feel like a pig in a feed lot.
I don't want to get the feeding tube - so we will see if I can tough it out. She said next week my taste buds loss will go from food tastes like cardboard and dirt (now) to foul - rotten. Fixed skewered shrimp and peppers/mushrooms and garlic toast- big salad with cranberries and pecans, garlic toast, cauliflower/butter-herbs - all tasted the same and hurt like hell to swallow- decided that will be last 3-d meal until taste buds come back. Soup and shakes until Thanksgiving -she said if might be a couple of months after treatment (August 23) before tastes buds and saliva start to return. It would be great to enjoy Thanksgiving and Christmas with real tastes.
Got the word my PT Cruiser was a total loss - be warned - that was with a 20 mile hr. impact. Will have to add getting another car into the mix- have to pull all my belongings out of "Pete: tomorrow, short eulogy and on we go. He needed tires anyway. We were going to put a grand into tred next week....thank you!
My daughter turns 10 Thursday (family gathering) - all focus will be on that - as it should be; with a party with her friends Saturday night and a girls-night-out sleep over...should be crazy. I love that little squirt. I know she is concerned and the slightest implication of a complaint affects her. It will have to be business as usual with the parties. My mother-in-law from Dallas is in for a week - so I need to be in the entertainment mode - she is nice and it makes it easier to deal with other issues. We get along great - and of course she as great concern for me.
For anyone reading with similar issues: Build your local support group (THE number 1 first thing to do) - and use the tonsil blog group also (tonsil-cancer-support@
My radiation nurse said we would build a plan that included no -pain ( not exactly true) - but they have been very responsive with solutions for nausea and sore throat pain- ask for "magic mouthwash" dental numbing in a cherry mouthwash you can swish and swallow for throat pain and Lorazepam for the nausea (they will give you another 3 pill cocktail for the day of Chemo and the two days following - the 1st chemo is the easiest part-) I am on a 7 week radiation and 3 chemo menu - and am at day 10 on radiation and have had 1 of 3 chemo. The Tonsil-Support group is a good group with lots of answers.
Song of the Day: Yesterday - The Beatles
Sunday, July 20, 2008
DAY 53 - Another Day in Paradise
Interesting changes a foot ( a neck or actually a mouth). Throat is getting sorer daily and have been unable to sleep through the night. I still have my voice and can eat satisfactorily (ice cream and Boost shakes 3 x a day). Finally hit 160lbs. which was my goal before the eating thing becomes more difficult. I have my anti-nausea meds going but gagged on a peanut butter shake this am. Peanut butter would be a great additive - but the taste gags me.
I have to sleep more in a reclining position to keep stomach under control. Am waking up between 4 and 5 each day - feel like I have pneumonia - lungs congested with that thick mucus. When I spit it out - it is like wallpaper paste- water won't even wash it away.
I get up and have hot tea to braek it up and try to get an hour back during the day somehow. Someone recommended a Zero Gravity Chair - which certainly ( from a Buck Roger's point of view - and era - for those younger - Star Trek/Enterprise era) sounds much cooler and pro actively adventuresome than it really is. I ordered one on Amazon today and should be here in a few days. It is supposed to be flexible enough to find the sleep position "sweet spot". I will try to get a full night's sleep in that. It folds up and I can keep it under the real bed. Perhaps an expensive "patio" chair when I pop out the other side of this "Journey to the Center of my all new Universe".
Relatives are in town; we went out to lunch today and I couldn't eat much - everything was too spicy ( soup and a spinach salad). However, no weeping - I culled all the whipped cream from everyone's sundaes and that canceled all the spice issues. New "approved" sweet - remember sneaking the can of whipped cream out of the fridge and shooting it into your mouth and getting away with it- when you were a kid? Now I can just do that over dinner. How to make kids jealous- ha. Making a list of pluses to this thing and there surprisingly are quite a few. Fully authorized gorging on whipped cream. There must be more - just none come to mind at the moment.
Song of the Day: SteppenWolf - Magic Carpet Ride
Thursday, July 17, 2008
DAY 50 - Another Day in Paradise
Milestone: Day 50! Seems like forever and like just yesterday. Good connections today with friends and family. Got new meds to combat nausea and reflux stomach issues. Hope it works for being able to sleep at night. Am looking at at Zero Gravity Lounge Chair as a tool to help also- can't keep getting up every .5 hours and waiting to get tired to try again. They are on sale- so may give it a go. Highly recommended from lots of people that need to sleep elevated.
Life is almost a Comedy of Errors lately - with the original inconvenience that started this - then the dental problems and then the car yesterday...tonight's episode was me sitting on the edge of the tub putting lotion on my heels and slipped backwards into the tub - couldn't stop myself because there was too much lotion on my hands............landed hard on my butt and then smacked my head on the wall. Thank God, I was the only person to see it....sat stunned for awhile and then laughed. Pretty stupid. I hope I am not reduced to this as my form of entertainment.
Recommended by my friend Denise:
Song of the Day: The Drifters: Up on the Roof
Wednesday, July 16, 2008
DAY 49 - Another Day in Paradise
Well the old adage about when you think you are as low as you can go - you see the elevator has more floors to go. On the way to radiation treatment today I had to take a long way around as they are working on the freeways in downtown Sacramento. Just as I got to the freeway turnoff - everybody who had been traveling about 30 mph suddenly stopped. Everybody (except me) found a hole to dive into to avoid contact. Rear-ended car and pretty much ruined by beloved PT Cruiser. Spent the next 3 hours waiting in 100 degree weather - for tow truck and connection to rental car. This is an expense I hadn't figured on and will delay my treatment by at least one day as I missed my appointment too.
Will need to get car handled and if totaled - find a another - this was paid off - so, a used one will have to do. Wrong time for buying a new car. Well - I needed new tires anyway.
Now, in addition to having the acid reflux in my stomach - my foot is bruised from trying to drive the brake pedal through the floor and my back is out. Fortunately - I have a great Chiropractor and have set up weekly visits. Could have been worse - nobody hurt, everybody else drove away, got a rental car- got my treatment extended, have insurance - so, all in all, I need to not focus on my health issue while driving and not be lost in thought. Lesson learned.
Hope I can get some sleep tonight - was up all night - glad to see the sun come up finally this am.
Down to 155lbs. I had bulked up to 159 - but have only kept down a potato and some juice for 2 days. Lost everything that went down - came up yesterday...so have started back on anti-nausea pills and Tums. Yum - with a twist of lemon and some tonic and I am set.
Dedicated to my WIFE: Have to stop whatever is happening when this comes on and slow dance. No one was ever luckier than me.
Song of the Day: Righteous Brothers - Unchained Melody
Today pic - is to PETE - my PT Cruiser who is ailing worse than me today.
Tuesday, July 15, 2008
DAy 48 - Another Day in Paradise
Got a good day's work in from home. It is nice to have email and computer set up with ability to pull calls from my personal line at work. Felt more productive and less focused on my health issues.
Bad night last night with this acid reflux issue. Got pills today but takes 3 days to kick in. Stomach feels like it is on fire. Hurts worse to lie down. May have to sleep on the couch tonight- no recliner and I keep having to get up.
Some days you are the Lizard and some days you are the Mantis. In this version, I think I am the Mantis.
Song of the Day: Animals - The House Of The Rising Sun
Monday, July 14, 2008
DAY 47 - Another Day in Paradise
This was the day I anticipated going back to work like nothing had changed. Still got some work in but will have to be from home for now. The word went around at my work today, so no cats left in my bag.
Great support and emails from friends and colleagues. It does mean a lot and emphasizes the concept of Another Day in Paradise I am blessed to experience. What if I wasn't as lucky as I am and didn't have friends, and support and medical insurance and a way to get to treatment and a million other "little" things that are huge when you don't have them. I see others in the treatment center and my heart goes out to them as they are not as lucky as I am.
Many have commented on my "Song of the Day" and have given me excellent suggestions...ha - I may never have to come up with an original one again. My sister sent video clips from the balloon ride over Napa Valley for the early birthday present she bought for me ....can't wait ( but oh - hummmm - I guess I will) to celebrate that opportunity and the end of this "annoying little experience".
My friend Hal recommended this one and as Captain Kirk would say: "I will make it so".
Song of the Day : Nena - 99Luft Balons
Interesting thought from the Tarot: Be the lightning instead of waiting to be struck by it.
Sunday, July 13, 2008
DAY 46 - Another Day in Paradise
Bad sleeping last night - lots of mucus and got up 10+ times during the night. Was glad to see the sun come up. I received more cards and some emails from friends and family....very nice - it means a lot. It is almost tougher being on the outside without knowing what you can do for someone else. I get regular good advice from new acquaintances from the Tonsil Cancer blog -Al & Nancy from Texas. Al is further down the line on this thing and it is good to see that the tunnel plays out. He acquired a new meat smoker - probably as a gift to himself for all the milkshakes he had to endure..ha.
Got a good email from my sister with a suggestion for the song of the day - great one - thanks Sharon I love you.
Song of the Day: Van Morrison - Dweller on the Threshold
Thursday, July 10, 2008
day 43 - Another Day in Paradise
Now starting to feel a bit lousy...stayed in bed the whole day - got up at 2 to go to 3rd radiation treatment. Had a 250 cal boost for late lunch and a piece of salmon with lots of butter and vegetables and another boost for dinner. Still maintaining my weight at 162-165 . I was 150lbs when this started and put on extra weight to combat the weight loss I am sure to experience.
Got to give a short shout out to my good friend Denise from work. Man did we ever butt heads in a competitive manner when I started working over 5+ years ago, but through common enemies became friends. Thanks for keeping the Red Phone handy.
Marvyn Gaye: Ain't No Mountain High Enough
Not feeling so hot- so will close early today - last radiation for the week tomorrow so will get a respite for the weekend. They say that you'll start to improve a few days after chemo. They say the effects will calm down a little 2 or 3 days after chemo and the nausea will subside...until the 17th day when they give you some more. Then it gets worse. I'm glad I have good support from family and friends. It means a lot. I can't imagine going through this without support from family and friends.
Got nice cards in the mail today and emails from friends from high school.
Song of the Day: David Bowie: Golden Years
Wednesday, July 9, 2008
DAY 42 - Another Day in Paradise
Second day of radiation.Very tired today - partly for staying up late working on the blog of the decade yesterday. Had lots of pills to take today..I don't like to take pills, so this will be interesting. The two days post each chemo you need to take up to 5 kinds of pills that tell your receptors : "You don't want to puke - so don't even think about it."
Noticed impaired spelling, typing skills, equilibrium, off - drifted off once or twice - couldn't keep my train of thought. I understand this will clear up soon.
Got through the work day - ends at 2 pm and headed around the freeway fix to the 2nd radiation treatment. Some loss of time but made it early...took me right in.
They all knew my name - asked me for my tunes and went right to work. Got all clamped down and I was out before we were half-way through the first set.
2 more sets of medicine when I got home....heavy duty floss and brush session and then a fluoride gel in custom made teeth covers to stay on for 10 min plus. Then the special mouth wash has to stay after spittting for 2-3 hours. Apparently, the biggest worry now is mouth and gum infections.
Song of the Day: Il Divo : Without you
Tuesday, July 8, 2008
DAY 41 - Another Day in Paradise
This is somewhat like the underlying masochistic tendencies of dentists to shoot you full of Novocaine, put two hands and 4 instruments in your mouth and then ask " Say, how have things been going for you....something that will not get an answer - BECAUSE YOU CAN'T TALK!". The same here - I have this giant mask, just short of uncomfortably tight on my face, a giant rubber spatula in my mouth pressing my tongue down and THEN they ask if I need anything else or if I want the music louder. The thumbs up worked. Thanks to Steppenwolf: Born to be Wild....I got my motor running and got out on the highway.
While talking about the custom environment - they told me about a previous patient - big burly biker guy that had made a promise to his 5 year old granddaughter. She didn't want him to be scared, so she loaned him her favorite teddy bear to hold during treatment. She would meet him in the lobby after each treatment and ask him if he had held on to the teddy bear, so he wouldn't be afraid. The power of a beautiuful little girl can crack the toughest facade - the techs said he held it tight for all 35 treatments - and as he was a 6'+ , 200lb+ guy - nobody said a word.
Odd feeling - the radiation #1. It could be my overactive - vivid imagination (like that would be new), but it seemed like I felt bubbling in my neck. Like blowing bubbles through a straw in your milkshake---you can feel it through the glass...doesn't hurt, just odd. So, I created the thought that the radiation was cooking the cancer cells...probably not what was happening {if anything} but it was at least a vivid pro-active thought.
We thought we would have to pay the co-pay each time (x 5 days a week for radiation- but not applicable once treatment starts)- that saves us about $1200 - that I can now spend on cases of 250 calorie Ensure shakes.
After treatment, jetted out to the airport 30+ miles west and then back to near the treatment center - another 30+ mile trip (and then back to the Chemo treatment center 20+ miles) to pick up my youngest son [age 20] who had arrived back in the states from visiting [for the weekend] his "we're just friends" female roommate who is Spanish immersion studying in Mexico. She is very good for him and very smart - so his first big adventure turned out well. Now he has the first of many good life stories to tell.
My wife Lise also had to back-track several more times to pick up our 9 year old daughter at Zoo camp and take to Ballet lessons - back to check on me and back to pick up our little ballerina and then back to pick me up at the hospital and then back home for us to start dinner. This is a perfect example of the support system you NEED in this "life experience"- as much as any of us think we are the center of the Universe [and yes - we all do] especially when we are diagnosed with Cancer - guess what - the world does not stop. Lives of Others (fantastic movie, btw - put it on your must see list) continue to swirl around you. Your family, friends, co-workers still have their pre: now-you-have-cancer priorities and as painful as it may be to wrap your around this thought: Everyone else is the center of their Universe also and you have a [hopefully] loved PART in their movie {with a bad script during this chapter}. You may be a featured bit player or have a major role in all our companion's life movies....but it is their movie you pass in and out of.... just as they are players in your movie. I remind myself constantly: Try to not impose on my family and friend's daily lives any more than is necessary. Mentally, try being the spouse, child, friend, co-worker for a day, or better yet 7 weeks or even better yet 7 months - being married, connected, work with, etc to the the screwed-up gig you are engaged in: Big fun for them too, eh (Canadian for Don't Ya Think!). Try to make it light and funny and they will magically have more time for you. Funny how that works.
Back across town for the first Chemo (unfortunately the two oncology centers [Kaiser] are 20+ miles apart. This 2nd part to the day was more involved. I have to say that the quality of care and genuine caring quotient skyrockets in the Cancer ward. In a Dark Humor world - one could say I was in a Deluxe Spa Environment ( the rates are about the same and so is the level of attention). Nice GIANT recliner to sit in - would easily fit someone three times my size and twice my height. I felt like the little kid in grandpa's chair - feet didn't even come close to touching the floor. Got hooked up to the IV ("Wow- you have great veins!" Unfortunately, that and long eyelashes are my two best features....go figure!). I came ready for the long haul- iPod, notebook, newspapers etc. A three hour session turned in to a four hour session. Lots of saline drip and the chemo treatment followed by another quart of saline drip. A few trips to the bathroom, pushing a metal Christmas tree with IV bag ornaments was involved - you are sipping on sodas, and they are pushing several quarts of liquid into your veins - and a I have a bladder about the same dimensions and features of a small tea infusion ball - I got to make the trek a few times.
They included a liquid version of the "nausea-be-gone" med in with the drip and advised me to take another at home tonight to prevent vomiting. I have a strict regimen of anti-nausea meds to take all day tomorrow and Thursday also. I took a half a Vicadin for the increasingly sore throat and uncomfortable IV hook-up [dragging my cart around with the tubes wasn't helpful]. Another cheery thought: If I am vomiting and having Diarhea and my throat is so sore I can't swallow the meds - THEY COME IN SUPPOSITORIES also. I must ask if can crush up my Vicodin and inhale it. Late 60's revisited; latex and restraints, Vicodin and rock and roll on the CD. Be careful if you even think about missing the good old days...it is like the Butterfly Effect (another great movie) - this version is slightly altered and won't be as good as you remember it.
Great part of my day: got a fabulous long email from my Mother-n-Law in Chico. We haven't communicated as much as we should and this one communication probably made up for all that and more. A very positive boost. Loved it.
My other Mother-n-Law in Dallas (don't most of us have at least 2?), calls regularly to check on me and will come out for a week this month for my daughter's 10th birthday. She also is very caring to me and has grand advice and great recommendations ( as she is a survivor herself). I am lucky to have those two great ladies in my corner. They have lead a more virtuous & harmonious life than I have and must have many good street creds in Heaven. Has to be good Karma - I am lucky.
A special thought for my wife Lise- as she took the day off and taxied me, encouraged me ('Hey, you are doing great!") all day. Was taxi driver, caregiver, photographer, extraordinary companion, Mother to our little princess (ballet dancer/cello player) and daughter/step-daughter to the two great women who have bestowed extra love in my direction.
Intent is to go into work tomorrow, until it is time for my 2/35 radiation treatment at 3pm (just to spice up the experience, a large section of the freeway between my office and the hospital is closed 24/7 for a week in the direction I need to go every day-ha...remember this is just a test- if it were easy: ANYBODY COULD DO IT...and you don't want to be anybody - you want to be in the group that survives to live Another Day in Paradise).
Tomorrow's CD will be Janis Joplin: Try [just a little bit harder].
If one can associate the cancer mass in my neck personified as the Wicked Witch of the West- then it is only a short hop to have my oncologists be Dorothy, the Tin Man, The Lion, the Scarecrow and yes, even Toto. Today we threw water on the Witch. Great Video clip. Today we started the shrink and melt attack plan. . From my earliest years this is the classic example of triumph of Good over Evil.
Song of the Day: The Beatles: Let it Be
Monday, July 7, 2008
DAY 40 - Another Day in Paradise
Well the past is coming to a close: 60+ years...the FUTURE begins tomorrow at 9am. FINALLY, treatment is about to begin. I have my first radiation treatment [1 of 35] tomorrow morning and then my first chemo [1 of 3] treatment [3 hour session] at 1:30 pm. Then it will be a daily [M-F] regimen of radiation treatment for the next 7 weeks with a chemo boost thrown in for good measure on treatment days 17 and 35. Lise cut my hair about as short as you can get without getting skin....so I will get a jump on the hair loss thing.
Today was a test fitting of my custom-made radiation mask and another set of x-rays before the real deal tomorrow. I had Lise take a picture of me on the treatment table. Your head is not going to move at all with this thing on- you are literally bolted down to the table. It covers your shoulders also, so you are not going (or wiggling) anywhere. It is porous, so you can breathe - but can't see too well- A: I have my glasses off and B: the mesh is tight against your eyes. I am not claustrophobic (thank God) - but I did notice my heart rate accelerating a bit...You have a rubber ring to hold onto, as the table is narrow and they don't want your arms to flop around and they put a big rubber band around your feet to keep them together.
With all the rubber, latex and restraints.....I started to laugh, as there are some that would pay extra for this sort of thing...but as you can see in the picture, laughing is also not easy as there is a big rubber pad in your mouth with a giant popsicle stick attached to it - popping up out of the mask. I had Lise take the picture, as I couldn't possibly describe this situation and have it make any sense. There is a "x marks the spot" target on the side, so the radiation hits the same spot every time.
As I can bring in my own CD to play while I am doing this, I have chosen Born to be Wild. I wore this song out on 8 track - 4 track, and cassette tape (if you are not in the Classic Rock -n - Roll age group; this is pre-iPod) . I get to listen to it (as do the techs) at least 35 more times. Back in the day- I had a 650 BSA motorcycle that was chocolate and chrome- extended front forks, tear drop tank [ala Peter Fonda in Easy Rider]. Hell, I only weighed about 130 lbs in wet leather and hair that tucked into my belt in the back...that bike was heavier than I was and I was fine as long as it was moving - it was when I stopped that I had a hard time keeping it upright. From somebody else's point of view it was probably pretty funny thing to watch...but I thought I was cool, so it worked.
The true discomfort today was that they had Perry Como on the house CD, I was strapped down and could not escape...in perspective, it could have been Rap - so I survived the test- ha.
Like a true nature's child
We were born, born to be wild
We can climb so high
I never wanna die
Born to be wild
Born to be wild
We also met with the Nutritionist and once again discussed the feeding tube - affectionately known as PEG. The expected weight loss is 20 to 50 lbs. I just bulked up to 160, eating like a pig - so I can give them the 20, but that is it. This is a hell of a weight loss program...take note Jenny Craig fans. I supposed that if you swallowed razor blades and put screaming-hot melted cheese in your mouth and threw up a lot you could replicate the program.
I got a bit of a shocker today from the nutritionist. I was figuring this would start getting better after the 7 weeks were up and figured I could tough that out. What I heard today is that at the end of the 7 weeks it starts to get really bad and that I might not be able to eat normally until Christmas or longer. That is 6 months of the demented Jenny Craig program. I am not as sure of my level of toughness on this one. I am determined to not get the feeding tube if I can get through otherwise. I have to consume 2500 calories a day to maintain my weight which is 10 cans of Ensure every day for 6 months....aaaaarrrggghhhh.
This is passing through my daughter's Birthday, my birthday, our anniversary, my wife's birthday, two son's birthdays, Thanksgiving and perhaps Christmas. I did the steak and potatoes thing tonight as it may be awhile. I heard that you can actually whirl a pizza in a blender - I suppose that if you mixed it with Jack Daniels and a Vicodin you would cover all your bases - nutrition and attitude wise.
Song of the Day: Steppenwolf - Born To Be Wild
Wikipedia: Mask: A mask is an artefact normally worn on the face, typically for protection, concealment, performance, or amusement.
I am thinking amusement at this point, but may not think so a few more weeks down the road.
Sunday, July 6, 2008
DAY 39 - Another Day in Paradise
Well, here we go - last weekend of "normalcy" for awhile. The countdown begins tomorrow with final test of radiation mask and then Tuesday 9 am 1st radiation treatment with the Chemo to follow in the afternoon at 1:30p. Lise cut my hair today - very short - next step is shaved. My mother-in-law called today from Texas to wish me well this week. She has had a similar experience with cancer and chemo and says she shaved her head on purpose in advance to "be in control - and be pro-active". I like that advice and intend to shave my head soon - to beat the Chemo barber.
This radiation mask is a trip. It holds your head absolutely still so the radiation always hits the same spot - marked on the side of the mask. I don't think you could do it easily if your were claustrophobic. If you have a hint of S & M in your style- you might actually like it - or somewhere in between. The first one they made for me didn't turn out as they liked so I had another made and they gave the 1st to me as a "souvenir".
Intend to take photos of the treatments in the beginning. Have seen some from others in the same situation and the skin burn is not a pretty picture. However, the only thing that everyone agrees on is that no two patients are the same and react the same. So we will see. Seven weeks of treatment and then I get to Break On Through to the Other Side.
Song of the Day: Doors - Break On Through
Saturday, July 5, 2008
DAY 38 - Another Day in Paradise
Seems like I am measuring everything in terms of the day I start treatment. Last Saturday before treatment, etc. 2.3 days to start. 58 hours to go. This mouse in my neck seems like it is trying to become a much larger rat. Seems like forever when diagnosed...did I mention I am anxious to start the poison and burn program?
Got a call from a friend in the Bay area...he called to say he didn't know what to say but wanted to say something, so I would know he was thinking of me. That is unfortunately the best a friend can do...but is enough...it meant a lot.
Trying to bulk up to 160 lbs. so I will have something to lose. Like working two jobs to make extra cast before you fly to Vegas - because you know you are going to lose. I figure I will not seriously consider the feeding tube until I hit 140 lbs.
Am loading up on Ensure and other high calorie drinks - mixed Canola oil with my shake this am...anyone that reads this (including me) that has thoughts of a sensible diet with non-fat- low calorie options will almost gag on what I am doing- Canola oil, Ensure, banana, half-half and strawberries for a breakfast shake.
Indeed these are strange days.
Song of the Day: The Doors: Strange Days
Friday, July 4, 2008
DAY 37 - Another Day in Paradise
Happy 4th of July! Independence Day holds another meaning - in anticpation of the day I will be free from this "inconvenience". It is like having a mouse living in your neck.
Greatest part of my day was a visit from my sister who drove over from the coast. Good day talking about our kids and memories. As I had previously mentioned that an undone task was to go up in a hot air balloon over the Napa Valley... I had hoped to pull that off this year, but not sure as my birthday falls about a week post treatment. Most accounts I have read from others is that may be one of the worst of times physically.
So..............she presented me with a very cool early birthday present - a certificate for a hot air balloon ride from Up & Away Ballooning. Will post photos of that experience later. Totally cool. I love my sister and I know she would do anything for me. Again - I am truly blessed with lots of love coming my way.
Small 4th celebration with wife and daughter - fireworks and ice cream. It is great to live in AMERICA!
Just 3.5 days to go before the start of treatment.
Song of the day: 5th Dimension: Up, Up & Away
Thursday, July 3, 2008
DAY 36 - Another Day in Paradise
Wow- incredible day of medical visits - got my blood drawn by rather inept lab tech. Had 6 blood draws done and after first vial was full- instead of popping the vial off to set the next one- she ripped the needle out of my arm with about a one inch gash - lots of blood and lots of angst on my part- I still had 5 more vials to go and had to use the other arm. She said I was very pale - no kidding - and got to sit there for awhile and suck down a couple of cranberry drinks.
Also had my 2 hour session on Chemotherapy with side effects, etc. Lise and I met a very cool, but sad woman in the class. This is her second time around and lives alone with no relatives or friends to help - and is pretty much confined to a wheelchair to boot. She is having a difficult time finding someone to help her in this situation. Another reason to count my blessings. She has to rely on an unreliable transport system that often forgets her or shows up late- therefore she misses her appointments.
Now I know:
Hair will fall out.
Will throw up. A lot. Often.
Should not get pregnant or cause pregnancy and that there are chemicals in the hospital that California knows to perhaps, sometimes, maybe cause cancer (which shows there is some humor in any situation).
Have new meds (5) just to combat nausea in the first 3 days.
We all live our lives with very narrow parameters with our singular scope of our immediate experiences. It is interesting to discover parallel lives (alternate universe) existing right along the one you are comfortable with and then bam! - you slip over like changing lanes on the freeway and you are in another universe - the Cancer Universe. Took a tour of the chemo infusion center with every chair (15) full of a new universe of people old, young, every race, mostly bald , reading and wearing iPods and with a tube running from their arms. Are they people I see every day on the street, in my work, in school? I am now one of the "they". One of the "other people" - you know - the "this only happens to others" - glad it's not happening to me - others".
Will I be invisible to the old world? (except for the fact my Kaiser Medical card got a new red sticker that say "Chemo Patient"...pretty cool - kind of like a Captain Midnight Decoder Ring - extra privileges....in that you get quicker and more sympathetic service at the prescription counter.
Took the family on a cool early 4th of July excursion. One of my clients has a yacht that was a participant in the annual 4th of July (early) boat parade up and down the Sacramento River that stopped opposite the Raley Field Stadium - home of the River Cats (AAA affiliate of the Oakland A's) on he river and watched fireworks over the river at 10:30p tonight. about 30 boats of all sizes in the parade with hundreds more spread out on the river- with varying degrees of lights and decorations - People cheering and and waving, as we all went by. My 9 year old got to drive the boat (Captain is a friend) until it got dark and congested with other boats. Very cool experience - and a good memory for all.
Song of the Day: Paul Simon - Slip Slidin' AwayWednesday, July 2, 2008
DAY 35 - Another Day in Paradise
Spent 5.5 hours in the dental chair again today. I like my dentist, but this is way too much. Thank God this is the last day of this dental stuff for a while. ...[woo-hoo , I get to switch to the hard stuff next week with chemo and radiation - I probably will be longing for the dental chair in a week-ha].
The good news is that I am set to start the cancer burn and poison treatment on Tuesday and now there aren't any dental issues left to put into the mix. I understand it is a real bear to need dental work while in or recovering from treatment. Had two crowns changed out from the temps I had put on last week and a full prep and crown on the other side also today. I am lucky my dentist can make the crowns right in the office - otherwise we would have to send out for them and delay this whole thing another week to 10 days. At least they didn't trim any of the gum line like last week as my mouth is already almost too sore to chew.
Have a full day tomorrow of my last prep meetings- I have a "no food - no, not even coffee" blood test at 8am, then a meeting with the Chemo doctor at 9a, then a 2 hour meeting from 10a-12noon at a Chemo class with Lise joining me - to discuss meds and reactions I guess. Then there is a meeting with the nutritionist at 2pm and the radiology lab 1/2 hr away. That pretty much takes the day -will take a day off work.
Have found a great support group on line - Tonsil Support Group
As I have made an initial decision to not have the feeding tube installed, I am concerned about weight loss. I don't have that much to give up...maybe 20lbs or so at the outside...a lot of talk about severe weight loss. The only thing I know for sure is that I don't know anything for sure and will have to jump into the deep end to see if I can swim.
Also, a lot of chat about being 6 months to 2 years post treatment and still having serious issues with mouth , swallowing and diet. The real point is of course, is that they are still here to talk about it, which IS the point isn't it? The group is made up of fighting survivors and those that love them - so there is an automatic flavor of positive reinforcement. If you are in the 4 of 10 that didn't make it or you are really bad off - I am guessing you don't feel like you should gut it up to join a chat room.
Song of the Day: Tim McGraw: Live Like You Were Dying
Tuesday, July 1, 2008
DAY 34 - Another Day in Paradise
Have my last dental work before treatment begins tomorrow- 3 more hours in the dental chair...not fun. Having 3 caps and 1 filling. My last session was rough. Apparently the cavities were below the gum line and the dentist had to cut away some of the gum line. Man - it is so sore - even after a week. I am hoping this doesn't have an adverse effect on my treatment. Radiation at 9am on Tuesday and Chemo at 2 pm. I understand it will take 3 hours and I am loaded up with pills for before and after and God knows what else.
I should change this to my "Rainy Day" blog - as in saving up for a rainy day....I can see those rain clouds forming on the horizon now. When I was a kid in Oklahoma we used to sit and watch the horizon for tornadoes. It was an after-dinner ritual in the summer.
Pulled the good heirloom china and crystal from the "wait until the relatives show up at Christmas" hutch and the table is now set with the best. 'Tis much better that I use them every day from here on than to look down from above some day and see them on eBay. Wine does taste much better in a crystal goblet...even if it is "2 Buck Chuck from Trader Joes".
Exchanged emails with an online tonsil cancer group - some affected and some caregivers. They are on the other side of this and have some uncomfortable issues even after months and years post treatment. Am trying to adjust to the reality that this will change me in some ways forever (whatever that is). It is not like a broken leg that you forget about after it heals. That said: Let's start asap.
Song of the day:
Paul Simon: One Trick Pony