radiation successful! Surgery in 3 weeks! More to come!

A "Kink" in our Weekend Plans

Well, this has been a most interesting week. After Dennis’ episode last Thursday night, we noticed his weight dropped once more. I will not record the exact number, but if the trend continues, we will be in the single digits. Suffice it to say, he is thin…and wiry. Very wiry.

But he was able to attend the wedding luncheon of his nephew, Jeff, and his beautiful bride, Ruth, on Friday afternoon. This meant so much to Dennis to be able to celebrate such wonderful events. But last weekend, the feeding tube that has become the umbilical to nourishment became either blocked or kinked on the inside, and in spite of the expletives, we could not blow out (no pun intended) the obstruction. So there was no nocturnal infusion of that lovely gray liquid going into his system.

Dennis went down a few more pounds. So in an act of desperation, we bought a new scale. Now we have two scales. That way, if we don’t like what the one says, we can get a second opinion. (Again, there is a certain perverted logic at work here.) We are not exactly sure just what was blocking the tube, but Carter was looking for his Thomas the Tank Engine all night. So we hauled our cookies into the Huntsman yet again, and they promptly removed the defective tubing from his left nostril and replaced it with new tubing in his right nostril. I was glad because left nostril tubing is sooo 2007, and there is more beard on his right side to hide the protrusion. It’s almost as if it isn’t even there…almost. It’s hardly noticeable. As you can tell, we have the art of denial down to a science. We can even deny we are in denial. Hey, whatever works.

The technician was a master at jackhammering the garden hose (Dennis’ description) through his nose, down his throat, esophagus, stomach, duodenum, and regions with weird names of Latin origin, and finally out his right sock. Talk about going deep! They stopped just short of giving him a pedicure, but Dennis does walk a little funny. We all pretend not to notice.

Once again the technicians disregarded our suggestion (well, actually it was my suggestion) to place a “Y” tube up both nostrils,(or a “U” tube if you’re a Ute fan) sort of like a back-up system... a spare tire…an extra generator... in case one nostril fails, the other can kick in. The side benefits would be that Dennis could have two flavors of formula going in simultaneously…like chocolate and vanilla, or cilantro and jalapeno! However, I guess our reputation has preceded us because the staff just looks at us with that expression that suggests they know we are unclear on the concept. But I say hooray for naiveté! It is often comforting to know that I am protected by the enormity of my stupidity. It is not always conducive to peace of mind to know too much, to fully grasp the situation, and so far, I have been wildly successful.

While I waited for them to switch Dennis’ nostrils, (also known as “nasal juggling”) I began thinking about our house. There seems to be an interesting metamorphosis taking place these past months that is hard to define, and hard to deny. So much living is mandatory to transform a domicile into an extension of its inhabitants. I don’t know when this happens exactly, but it does. Daily routine is part schedules, part obligations and responsibilities, and part non-descript menial tasks and duties. One hardly notices all the component parts as we pass the days on cruise control. And then, it seems, variables are imposed without warning that completely re-arrange the elements into a whole new configuration. The ground shifts beneath the feet, and balance is lost. The daily routine that seemed so predictable and reliable is discarded as obsolete to the current reality, and replaced by an alternate life-paradigm. Lives are in chaos while all the objects in motion tumble through the air as if catapulted by volcanic eruption. One wonders at possible landing sites and how things will ultimately come to rest. Lives are profoundly impacted, but so is one’s home. Can it remain a sanctuary, where one can try to swallow in spite of crushing pressure that constricts the midsection?

But then people come and re-arrange all the equations and variables and impose a new order. And they bring gifts – music, food, humor, memories, and pleasant things. There are those who pray or send positive thoughts, or eat chocolate on our behalf. And order is restored. And life resumes…sweeter, stronger, transcendent. And things are the same – only better. This is a good thing.

Love to all,

The Clot

FEEDING TUBES ARE FUN: HERE, WE'LL PROVE IT!

FROM THE 'HIGH' MIND OF DENNIS:

Having finally given in to the necessity of a feeding tube, I’ve decided to make the best of it and look at the positive side of the experience. After all not everyone gets the opportunity to experience first hand the wonderfulness of a tube inserted through your favorite nostril and pushed further down the GI tract in order the supplement oral feedings. So the clot all joined in to get their own versions of the feeding tube, and then comprised a list of “The Benefits of having a feeding tube”.

1. Feeding tubes can be stylish – especially in ‘restyling’ the contours of the nostril.
2. By having a feeding tube, one is able to avoid drinking formula from a manly Ute Football Fan cup.
3. Finding creative ways to sneeze, while trying to clear the nostrils using unique technologically near impossible methodology. For every new way of plugging the nostril, there is an equally ingenious method available to unplug the tube – Murphy’s new law of thermodynamics.
4. You are always aware of where your left nostril is – a significant benefit in determining right and left orientation while going through this whole process.
5. Once tape is placed over the tube to secure it to the cheek there is no shaving opportunity until the tape is replaced – another good reason to grow a beard during therapy.
6. New games at night: Try to time your breathing cycle to match the whirr of the pump so that sleep might actually occur during the night. When this is all over, we’re getting a ‘white noise’ sound machine to imitate the whirr of the pump.
7. Keeps your skeletal body form from reaching its full ‘thin’ potential.
8. Gives something for the grandkids to reach for when they come for a visit, and see the smiles on their faces as they delight in finally grabbing hold.
9. If you come down with nasal congestion, you can try reversing the direction of the feeding pump, from ‘suck’ to ‘blow’. (Also provides a great comeback: ‘Ah, blow it out your nose’.)
10. Supplies never-ending jokes of “Hey, Dad. You’ve got something on your face. No, a little higher. A little higher. Perfect. Now, PULL!”
11. Gas-siphoning becomes a little easier, though slightly more painful.
12. Four words: Chicken Fried Steak Shake
13. Gives "Stick it where the Sun don't Shine" new meaning. (Plus, I can say, "Been there, done that")
14. No matter how much you grow to love the tube, you can always look forward to the day when it is no longer needed!

Not to be negative, but there are a few Cons:

1. Having to teach the grandkids that it’s still not okay to stick fingers up noses
2. Having to teach Brodi and Erin the same thing

Three Phases of "Operation Bugger Obliteration": Explained

Hi Everyone! We are planning to have a fast for my Dad on January 13th, in anticipation of his CAT scan on the 17th. We would love any participation! Some of you have expressed a desire to have a "road map" of the entire process he has gone through, and will be going through, so here it is, in our own limited vocabulary.

Phase One: Chemo and Radiation (November – December)

In order to try and shrink the mass away from two major arteries and veins

This would mean an easier surgery

Involving 28 daily radiation treatments

Weekly Gemcytobene infusions (chemo)

Constant 5 FU Infusion (chemo)

Infusions went through PICC Line to his heart

Side Effects: Nausea, weight loss, ulcers, fatigue

Phase One is Done!!

Phase Two: Recovery and Surgery January - February

Three weeks recovering from Phase One

January 13^th: Fast for Dad that the tumor has shrunk- We would love any participation, any way! (Light Candles, “Prayer Warriors”, Meditation, Positive thoughts, etc.)

January 17^th: CAT Scan to see if Phase One had an effect on the mass.

January 18^th: Meet with surgeon (Dr. Mulvihill) at Huntsman to discuss surgical options. If the mass has gotten smaller, or at least stayed the same, then we go to surgery. If not, we go to surgery!

End of January: Surgery called “The Whipple”

The Whipple involves removing the head of the pancreas, a portion of the bile duct, the gallbladder and the duodenum. Occasionally a portion of the stomach may also be removed. After removal of these structures the remaining pancreas, bile duct and the intestine is sutured back into the intestine to direct the gastrointestinal secretions back into the gut.

The surgery is complicated, and recovery will take a while.

Phase Three: Another round of chemotherapy

More Chemotherapy to make sure we got all of the little cells

Go to Disneyland- anyone is welcome to join us

OH, WHAT A *&$#@ NIGHT!

Good Morning, Dear Ones,

Last night was either really long, or really short, depending on your perspective. Yesterday had been such a good day, that Dennis made a sudden and very rash decision to eat some of my cooking. Yeah, yeah, I know what you’re saying…”What was he thinkin’?!!!” But in my defense, I had assembled a chicken/rice soup, with scrupulous attention to making sure it had no spices, no flavor, and no taste. (As luck would have it, that’s my forte with everything I cook.) Now, what’s wrong with that?

Well, Dennis, the eternal optimist, thought it looked harmless enough that he might be able to “consume and retain.” That’s always our goal. Boy, was he wrong! We’re not sure if the pea, the tiny fragment of carrot, or that one grain of salt was the culprit, but the specter of “soup past” returned with a vengeance, and instantly became “soup passed.” He had an episode of unrelenting pain, spiked a fever of 102, and began shaking so hard it took on seismic proportions. And I, the model of composure and decorum, began yelling to Dennis for instructions, in the mistaken notion that the greater the decibel level, the greater the therapeutic value. With my usual “limited knowledge/rampant imagination” syndrome, I have discovered what does NOT work in reducing fevers:

1. hysteria
2. harsh language (strange, because that’s usually a panacea for all ailments.)
3. invoking the name of Hippocrates

What DOES work in reducing fevers:

1. calling our son-in-law, Dave. ( I know when he arrived, my fever immediately went down.)

I told him about the shivering mass of gray flesh, and he began looking at me in an attempt to locate the source of the problem. I had to re-direct his attention to Dennis. (Shivering state of gray flesh is not so much an ailment of mine as it is an inconvenient truth of being really old.) Dave’s calm demeanor was reassuring. He eventually persuaded me that sprinting around the bed in ever tightening concentric circles was an excellent display of athletic prowess, but probably did not qualify as a legitimate remedy for fever reduction. He suggested Tylenol instead. That’s soooo Dave! (Always coming up with solutions that are so logical, but utterly devoid of imagination.)

He stayed with me until Dennis seemed to settle, and then we decided to give him 45 minutes more to improve on his own. Dave went home and then called me in an hour. By that time, Dennis’ temperature had come down (due, in part, to the avalanche of ice cubes I had tucked securely under each armpit.) His tremors also subsided, again, no doubt, an act of desperation to get me to stop trying to help. The final two hours of the night went by without incident. Dennis, by the way, endured the ordeal with patience that would make Job look like a whiner. We are so grateful for sons-in-law who are so supportive and reassure us that those early-morning desperate calls by a distraught mother-in-law are actually welcome. (We are especially grateful they chose to marry our daughters and produce gifted grandchildren.)

So we are in a holding pattern for the moment. Friday, we have an appointment with Dr. Kim Jones, our chemo/oncologist. And Dennis is scheduled for an ultrasound on Monday morning. But I want you to know that if anyone has any questions about how to reduce fevers, either call me (I will provide completely inaccurate information and sparkling conversation) or call Dave, who is logical, reassuring, and brilliant. It’s your choice!

Love,

The Clot

A Couple more Pounds, and Another Resolution

Greetings from the Clot.

Could you use just a little good news? Well, here it is anyway. Dennis’ weight is up about 7 pounds. Now I know this does not constitute a “hunka,” but the buttless can’t be choosers. He is now at (drumroll, please) 125 pounds…and that is without the Frankenstein shoes, the Sunday newspaper, and completely naked! We love the feeding tube. He still has bouts of nausea that must be managed, but that can be accomplished by Zofran and turning off the commentaries by all the political pundits.

Also, as a magnanimous gesture on my part, I have agreed to stop cooking. I was going to include that on my “Resolutions” List, but Erin and Brodi insisted that it is not an official resolution when it simply perpetuates an already-established policy, and that 22 resolutions was more than enough. Picky, picky! Ah, but I digress. We are able to actually see those extra ounces too. For instance, I noticed his eyelids appear rather pumped. Now, they had taken a particular hit when his weight was going down, and they seemed to be begging for water. They weren’t sinking exactly, but they were doing some serious doggy-paddling. And his nose got thin. Is it possible to lose cartilage mass in the nostrils? Anyway, his nasal contours are beefing up. Isn’t that the best news? As you can see, the smallest improvements cause us to celebrate. Hey, we’ll take it.

The girls have been mocking my New Year’s Resolutions List, claiming that not one of the 22 commitments will improve my character. But that was my whole intention. I don’t to improve my character. I don’t want to force myself to be a better person…that would be a mammoth task, and too much pressure, not to mention guilt. I just want to make the day better. That requires only a lot of bubble gum and a good book. Is that so wrong? I have challenged the rest of the Clot to post their resolutions into cyber space, and we will see what they come up with.

In the meantime, Dennis and I had something very interesting occur this morning. We actually had a conversation that was non-carcinogenic! We discussed where we should hang a picture. Now I know this doesn’t sound like that big a deal. But when our lives have been focused on blood panels, tumor markers, chemo, radiation, infusion, weight-loss, nausea, constipation, fufu bags, PICC lines and our trusty porta-barfy, there has been no time to calculate the location of a picture on a wall…to position it to its best advantage. It was rather refreshing.

I began remembering what it was like when hanging anything on the wall seemed menial, not necessarily delightful. That was a lifetime ago. When we were raising our daughters, we absolutely forbade them to use the word “hate.” This word was not to be spoken under any circumstances. They could use a euphemistic alternative such as “I don’t love” something. But its “verbness” was too negative to bring into our home. It’s ironic that we can talk about so many other things without any restrictions, as you have probably noticed from reading this blog. But today, I am suspending my self-imposed writ of “hateous corpus,”(that’s lawyer jargon for strong negative feelings). I hate cancer. It is an odious plague of Biblical proportions, and the grief and damage it does is incalculable. I will not describe my feelings in length. That would exceed my expletive quota for the entire year.

Most of you have justifiably as much contempt for the ravages and randomness of this insidious disease as I have. I am sure I am not alone. But I do look forward to the day when this curse is cured, and the only thing that metastasizes is love and joy; that tumor markers simply gauge the heart’s contentment; that the only disfigurement one ever must endure is from laughing so hard that it is impossible to replace the lips back around the teeth; and that the word “tumor” is text message shorthand for the number of additional cookies you want.

That day will come. However, today Dennis weighs 125 pounds, and I know exactly where that picture will hang.

Love,
The Clot

P.S. From Erin and Brodi:
Mom has been nagging us to come up with our own resolutions for the year. It’s hard to compete with 22 resolutions, and we insist on sticking with resolutions we know we can achieve. So here we go:

1. Quit Smoking.

22 Resolutions; and Pissy's Revenge

Happy New Year, Dearest family, friends and loved ones.

Well, ’08 is here and just a few days old. And Dennis has resumed his assigned seat in the Infusion Room. This past week has been somewhat rugged, (it has even exceeded “Pissy) in spite of the fact that he hasn’t been rayed for over a week, and his chemo-umbilical has been severed. He’s officially a free agent. However, Dennis’ gastric system didn’t get the memo, and old habits are hard to break. He’s been tossing his cookies with aggressive regularity, and he hasn’t even eaten cookies! “Nausea-R-him,” and he never goes anywhere without his trusty blue plastic bowl we fondly refer to as his “porta-barfy”.

In fact, we keep the potty completely surrounded with soft warm towels in case he gets the urge to “fall on his knees” in front of the porcelain “goddess of hurl.” Dennis has managed to maintain his niceness through the whole ordeal, but the problem is that he has become the incredible shrinking man. So the Clot decided to handle the situation in our usual democratic fashion. We held an election. On the ballot was the question “Do you want a feeding tube?” Dennis voted “no.” The Clot immediately vetoed his decision. (Hey, we gave him a vote…and he voted wrong!)

Erin presented her case for the tube with charts, bullet points and expletives, while Brodi and I punctuated it all with, “You go, girl!” Dennis, in his extremely weakened condition, finally succumbed and agreed to the proposition just to stifle the all-out verbal assault that was our version of “shock and awe.” Oh, there is power in the spoken word…and tantrums! Our motives were pure. We just wanted Dennis to be larger than the mass that’s to be resected! And he had definitely exceeded the “skinny threshold” of tolerable body mass. He now has a feeding tube! Yesssss!

The feeding tube is an amazing contraption. It’s a small distal tube that hooks around his ear, is taped securely to his beard (oh, there will be a primal scream when that formidable piece of adhesive is removed!) enters his nostril, extends down his esophagus, by-passes his stomach, and ends somewhere in his nether regions. I am not sure just where it all goes, but some things I don’t need to know. I do know that after the first night of nutrition infusion, he put on three pounds. This was in direct opposition to his daily 3-pound weight loss. I don’t need to understand quantum physics to know this is a good thing. The feeding bag, when full, assumes the contour of a full bladder. And since I am particularly subject to the power of suggestion, I spent the night on the couch in order to get some sleep. (You know the consequences of listening to the sound of a stream.)

So, what can go into the feeding tube? Here’s a list of possible candidates: pablum, 7 cans of Jevity 1(a curious-looking liquid resembling the concoction regurgitated by birds to feed their young) and plain unflavored soda water.

What cannot go into the feeding tube?

Pureed hamburger

French fries

Muffin mix

Pizza

Cheesecake

Popcorn

Bubbler Gum

Political campaign promises (something to do with a viability threshold)

Marbles (the grandkids were just wondering)

In addition, we have been instructed not to try to further shrink the mass by shouting harsh language down the tube, because this might interfere with normal bodily functions. This was a bit of a disappointment because we all want to get in touch with Dennis’ inner bowel system by unleashing our pent-up expletives. We were advised that such action, justifiable though it be, could exacerbate constipation, so once again we reluctantly agreed to comply to prevent any further distress for Dennis. But this is way hard.

Dennis and I partied our brains out on New Year’s Eve. And then we retired at 9:00 p.m. And I thought as I was drifting off that when I awoke, it would be next year. But I had neglected to factor in the “aging bladder phenomenon.” So when I next awoke, it was 11:00 p.m. and still 2007. At first I expected to be disappointed. 2007 has been, in the words of Queen Elizabeth, our annus horribilus. (That’s Latin for “a buttload of trouble.”)

But the final hour of the year gave me a chance to reflect on things, and I found that I was rather reluctant to relinquish great portions of these last few months. I have pondered so many things in my heart, and I realize those things will be influential in shaping the year to come. In years past, I have looked at the coming year as great expansive pristine territory to be consumed with carnivorous appetite. I no longer feel that way. I now understand that it is vital to reminisce, remember and recall…to ponder and assess…to look around, not just forward. And so, in my best John F. Kennedy “Ask not what your resolutions can do for you, ask what you can do for your resolutions,” I have assembled a rather motley collection of ‘o8 commitments. You will notice right away that they are not intended to improve character, lose weight, or finally earn that elusive degree in rocket science. But they do have an inherent value that has been missing from my list of resolutions past.

1. I am going to go for extended periods unaware of what time it is. ( This is a result of my watch battery dying suddenly and without warning yesterday.)
2. I am going to take side roads and drive 40 mph to reach my destination. ( I already do that on the freeway, but always run into a flock of “birds.”
3. I am going to single-task…or better yet, practice task deletion.
4. I am going to sit down to talk on the phone.
5. I am going to shred every to-do list and every deadline.
6. Eat popcorn.
7. Color with crayons and go out of lines.
8. Have so few obligations that they must expand to fit the day instead of wishing for more time to accommodate my severely over-programmed agenda.
9. I am going to take a vow of silence…for at least a few seconds each day.
10. I will own up to being a frosting freak. I, however, solemnly vow not to change.
11. I am going to lobotomize my inhibitions. (Yes, Virginia, I actually do have some inhibitions!)
12. I am going to try to avoid rehab for excessive jelly belly addiction.
13. I am going to work on staying up past 9:30 p.m. and still be compus mentas.
14. I vow not to make tacky hand gestures to my fellow drivers…even if “he started it.” This will be enforced more from lack of manual dexterity than self-restraint.
15. I will put some pictures in an album.
16. Nightly accounting will consist of what was done, not what was left un-done.
17. I vow to chew all our bubble gum before June. (We just purchased 2 cases, and there are 800 gumballs to a case!) That’s 1600 gumballs in six months. How many gumballs per day? You do the math, but by June I’ll have jaws like a steel trap!
18. I plan to dress in leather and get on Dennis’ screamin’ yellow motor scooter and race my daughters up and down Wallace Lane, until the neighbors report me for disturbing the peace and contributing to the delinquency of a senior (that would be me!)
19. Read a book in one sitting…beginning with War and Peace…while chewing bubble gum. (This is the only multi-tasking I will allow.)
20. Bake Irish soda bread.

21 I will not think what ’08 will bring, but what each day will deliver.

22. I will severely restrict dusting to semi-annually…quarterly at most.

As you can see, these commitments are not designed to enhance the year, but to glorify each day. I would hate to come to the end of my days regretting I hadn’t chewed more bubblegum!

Saturday night Dennis and I were able to attend the annual WillowCreek Pediatrics party, and it was so fun. Our confidence level was high because we remembered to bring along our designer blue barf bag we were given at the Huntsman. It is an engineering marvel, and obviously designed to be multi-functional. Besides the obvious, its design could accommodate episodes of hyperventilation, carry toys and books, act as a silly hat, carry cookies, and can be hung by the chimney with care. It fits neatly in my purse, and is aerodynamically adaptable for hurl with trajectory in any direction. We were delighted to have lasted till the salad was served before conditions made it imperative for us to leave. This was difficult because it was so good to be among some of the dearest people in the world. We were waving good-bye when, as if it had all been planned, everyone picked up horns and noise-makers, and spontaneously gave us a “21-toot salute” that Joshua himself would have envied. Talk about synchronized tooting! It did not, thank goodness, bring down the walls of the restaurant (you know, liability suits and all that), but it did generate that strange climatic atmospheric phenomenon once more that causes rain to fall on Dennis’ beard. Of course, the guy has eyes of cork, but it was reassuring for me to witness visual confirmation that he is hydrated. The eye-drought was ended. This is all very good.

Most of all, this year and always, we will begin and end each day with profound gratitude that we are blessed with such cherished family, friends and loved ones.

Love,

The Clot