Wednesday, November 28, 2007
We have never paid much attention to numbers – age, weight, speed limit, the BYU/Utah football score. But the other day we got the results of Dennis’ latest blood labs, and ooh, dat boy look good. How’s this for some impressive stats? ANC – 3.9, bili – 1.1! Impressive, huh? This, of course, means he could be infused with iron and gemcytobene, get re-tethered to his fufu bag, (we’ve missed that little appendage over the holiday weekend) and be zapped by the hospital power rangers. This is all very good news. We love the numbers.
Some numbers we don’t love as much. There has been a slight weight loss. His end zone is a little diminished. He’s still a hunka burnin’love, but he’s down a “hunka.” Now, we are not worried; he’s still got his 2-pack abs. But it takes less Saran Wrap to truss up his PICC line (by the way, neighbors, the primal scream you may hear in the mornings is the result of ripping tape that secures the Saran Wrap off his armpit hairs. I need to be more careful with the old double sticky!) and the elderly arm-wrestling partner has just agreed to the “best 7 out of 9.”
But in an effort to chubby him up, I suggested I bring the old apron out of retirement and rustle up some vittles. He immediately ate three chocolate bars and a bowl of pudding! I was too thrilled to be offended. I never realized the power of threatening to take the apron down from the rafters.
He is still 5’9” (6’ with the fro) and he looks pink and cute... everyone knows the medicinal impact of cute. He felt a little light-headed this morning, but that comes from being around so many blonds.(and loss of pit hair). Lightheadedness is a perpetual state of being for some of us. (Sidenote:This morning I was stricken with “sympathy jaundice,” but Dennis said not to mistake blond for yellow. Just the same, I may stay out of his fufu bag for a while.) But we are re-contouring his body one can of lard at a time. Everything he eats is plastered with lard, butter, or chocolate. If that doesn’t work…I’m going for the apron!
I haven’t learned many new words lately (of course, I still think oxalaplatinum is a new shade of blond) but I have learned new definitions for old words. Words such as “beauty,” and “courage.” There was a lady in the infusion room who was completely bald, no visible hair anywhere. She had on big, bold gold earrings and red lipstick, and her smile illuminated the place. What a woman! She was beautiful. There have been people with varying degrees of surgical disfigurement whose courage and grace are contagious. ( I guess “Frankenbooby” is not such a bad term of endearment after all) They all have what the Clot refers to as “Cyrano souls.” We are working on re-contouring ourselves. This is all good.
Our Top Ten Thanksgiving List:
Featuring “Thankful” and “Not So Thankful”
Not So Thankful: Cancer
Thankful: Cancer Specialists at the Huntsman Center
Not So Thankful: Loss of Appetite
Thankful: FuFu Bags
Not So Thankful: Singed Chest Hair
Not So Thankful: Nausea
Thankful: Zofran (anti-nausea meds)
Not so Thankful: Whiny kids (mostly Erin and Brodi)
Thankful: Patient kids, concerned for Ampa
Not so Thankful: The color BYU blue
Thankful: The color Jaundice Yellow
Not so Thankful: 4th and 18 to go.
Thankful: Beginning of Ute Basketball Season
Not so Thankful: score of 17 to 10.
Thankful: ANC score greater than 1.5 (Blood Count)
Not so Thankful: “Clot” home cooking
Thankful: “Clot” neighbor cooking
Very very thankful for friends, neighbors, family, the ever-growing clot, and our new definition of “Beautiful”.
Saturday, November 24, 2007
However, the results of a repeat blood test showed that his bili was down and his white cell count was back up. Dr. Jones, who brought us the good news, was then subjected to a demonstration of synchronized euphoric squealing by the entire Ashton Clot. When she recovered her equilibrium, Dr. Jones caught the excitement, and while she did not actually do a 360 in mid-air, she smiled a very loud grin. You’d have thought the Utes had just scored the winning touchdown (which, of course, they didn’t) There was such joy in Whoville, that I suggested we crank up the chemo from 5FU to 10FU! Dennis was patiently silent and then explained that FU’s are not like RPM’s that can be revved up at will. I don’t know why people keep annoying me with facts.
Dennis was surrounded by four darling grandchildren, the adult Clot, and the technicians. I did resist the urge to maniacally declare, “It’s alive! It’s alive!” It was one of Dennis’ proudest moments. And then they showed us how the radiation machine could rotate around Dennis’ torso, assaulting the mass from every possible angle. Of course, we had to leave during the actual procedure, but the kids were fascinated with the whole thing. When it was done, the tatts were hidden within the confines of a radical chest comb-over, and we all went home.
There is a lot of care necessary to protect a PICC line. The simple act of showering requires wrapping his entire upper right arm in hermetically sealed stretch and seal Saran Wrap. Dennis’ fufu bag must also be protected from moisture, so he encases everything in a Glad bag. His showers have become somewhat of a spectator sport, and I have invented all kinds to new parlor games in my mind.
Because we utilize Saran Wrap in such quantities, we buy in quantity. At the check-out stand, the checker, upon seeing the size of the Saran Wrap and aluminum foil said, “That must be some turkey!” Once again, I was seized by discretion and resisted the urge to say, “That’s no turkey. That’s my husband!” Two discretionary retentives don’t make up for a life-time of loose lips. But it helps.
P.S. Thank you for all the comments! They are so fun to read! (hint, hint :)
Monday, November 19, 2007
Dennis is also tolerating the daily radiation treatments, and he is beginning to assume quite a glow about him, which has drastically reduced our need to turn on the household lights. He really lights up our lives. He did his indulgent "under-the-beard" grin when we suggested that with a little tinsel and some ornaments, he could sub as our Christmas tree. However, he has categorically refused to guide anyone's sleigh tonight, even under the threat of being excluded from reindeer games. Oooh, someone sure woke up on the wrong side of the FuFu bag!
As always, Willowcreek has managed to make us laugh with their "First week of chemo" bag. We love the twinner one-piece footed jammies, although we do look rather like refugees from "Whoville." We now go by the monikers of little Boo Who (Joan) and little FuFu Who (Dennis). I will, however, probably have to retire my Minnie Mouse nightshirt. I'm reluctant to do something so drastic since it is only fifteen years old, and Minni's ears are placed so strategically as to disguise the age-induced sagging. (There's nothing quite like Disney cartoon characters to drive the men wild). We are planning a ceremony to retire the nightshirt in the rafters of the house where it will hang beside the apron, which was also retired... before it was even worn!
I am continually amazed at Dennis' tolerance level, but I must take some credit for that. His high "annoyance threshold" is due for the most part to being married to me for lo these many years. He has mastered coping techniques such as looking like he is listening, when in actuality he is working on his quantum physics. He can maintain a two-way conversation with a series of clicks, hmmms, and oh's, while watching every play of any athletic game on the tube. He smiles indulgently at the antics of the Clot while he is being poked, prodded and punctured. We like him very much.
I am not exactly sure what has hit us. All I said one day during a mid-October walk was, "Gee Honey, wouldn't it be nice if we could get away for a while and spend a little time together?" Daily treks to the Hunstsman Cancer Institute while being simultaneously infused and radiated wasn't exactly what I had in mind. I will be a little more specific the next time I make an off-hand remark. But we have spent more time together. Now that's a tender mercy for which I am grateful.
Sunday, November 18, 2007
Dennis continues to quietly endure the assault from the weapons of “mass” destruction. These are powerful and toxic, and worthy of harsh language. But the Clot actually had some good news the other day. Dennis has gained a pound! One huge and lovely pound! We are so proud, we’ll no doubt be cited for excessive celebration in the end zone. In fact, that’s exactly where the pound is…his end zone. The girls and I have been gaining weight by proxy in an effort to aid him in his quest, but the doctors indicated it had to be “Dennis density” and that our increased thigh size didn’t count. Apparently, no matter how much the “Clot thickens,” it doesn’t count for Dennis’ over-all body re-contouring. We are still thrilled, however, and have decided to rescind our requests for donor cellulite for the time being.
I know we cannot claim credit for this pound. It is the result of the amazing meals that have been brought to us. You have made him what he is today…a hunka hunka burnin’ love. We are truly grateful that so much time and effort has been invested on our behalf. You will never know how much we appreciate you. In fact, because of all you have done for us, I am forced to make a cataclysmic decision. Because I have been busted by the “dinner police,” I have decided to make some confessions to our daughters that I have been trying to avoid all their lives. So here they are…in no particular order:
*Yes, girls, some people actually cook meat as a main dish instead just of lighting “roast and potatoes” candles to create the illusion.
*Yes, some people actually have cook books that contain more recipes than just the numbers of pizza delivery places.
*No, not every homemaker has Domino’s on speed dial.
*Yes, some shoppers make grocery lists that include more items than Coke, chocolate and blueberry muffin mix.
*Muffins are the natural by-product of adding an egg and some water to the muffin mix and placing the whole thing in some sort of heat source…preferably an oven. (as opposed to spooning the mix directly into the mouth.)
*Speaking of ovens, I must remember to remove the new-appliance packing material and my sewing machine before we turn it on to cook the muffins. This will be rather inconvenient because extra storage space is so hard to find.
*Yes, there are some homes whose custom is to have dinner on a nightly basis and not just Thanksgiving and Christmas. ( This admission is particularly difficult.)
Finally, I am going to make a valiant effort to cut back on my “buy and lie” philosophy. You know what that is. It’s the practice of buying items, removing all identifying tags, sales slips and other incriminating evidence, and claiming to have made them myself. (I hope I can withstand the withdrawal) I am ashamed to admit to this particular addiction, but it absolutely dazzled my mother-in-law. Those who know me well, however, completely discount my claims…to the point that they don’t believe I actually made something when I actually do make something. Ah, the dilemma of deceit.
("Mr. and Mrs. Willowcreek Clot": T-shirts signed by Willowcreek staff)
This is not an easy road, but Dennis takes a lickin’ and keeps on tickin.’ His strong will is remarkable. For that we are so grateful. We feel such positive momentum, and we feel your love. The two are synonymous. Prayer changes things…it has certainly changed us.
We love you,
P.S. Recently I received a 'care package' from my friends at Willow Creek - the operative word being 'care'. It included packages that were to be opened on days of the week. Joan and I got quite excited when the first 2 packages contained 'his and hers' PJ's. For some reason, our recent thoughts had not included 'classy nighttime attire', and it was nice to be reminded that amid the tubes and flushes there is still a place for weird visions after dark. Thanks to all for the ingenuity and concern for the old guy; but remember - 'I'll be back'. Dennis
Thursday, November 15, 2007
Of course, the Clot was there en masse, and asking all kinds of questions, some pertinent, some not. Things went fairly smoothly. In fact, in the Infusion room, they do everything possible to make you feel at home. They are so hospitable, that we were even allowed to bring in food to eat while a large bag of chemo was slowly dripped into the PICC line.
Dennis mentioned that he was a little hungry, and perhaps some French fries would taste good. So our daughters went straight to The Point restaurant and ordered a massive plate of fries with fry sauce. They figured that if it would taste good to Dennis, it would also taste good to everyone else getting infusions. When they returned, they began introducing themselves to the other patients as they passed around the fries. What had been a fairly quiet and sedate atmosphere turned into a party. Oh, the diplomatic doors that French fries can open! Erin and Brodi had so much fun, that they are now planning next week’s “Thanksgiving Social.” We said that was probably ok, but that they may want to re-think the plans for shuffle-board and charades! The relay races were also probably not a good idea. However, “chemo-Bingo” just might work.
So far the side effects from these procedures have been fairly mild. Of course, these treatments are powerful. We were made amply aware of this when they said that if any of the chemo spills, we are to call the Emergency Hazardous Waste hotline. That does tend to make us rather cautious!
There have been some isolated moments when the natural bodily functions are somewhat compromised, however. This can be rather annoying and makes one just a bit irritable. Once again, the girls came to the rescue. In the finest tradition of the cheerleaders they once were, Erin and Brodi began a synchronized parody of a cheer one might hear at a football game. Humor can move mountains, and laughter has many side benefits. So, if you would like to arrange aid for whatever ails you, don’t go “over the counter,” go “over the top.” Just call 1-800-GO-BOWELS, and Erin and Brodi will be right over with their pom-poms.
I wish there were a way to tell you how much your love and support sustains us. Every card, every note, every prayer gives us strength. The love you have poured out fortifies our spirits and sustains us. Your faith gives us hope. And with that spiritual power surge, we are able to keep fighting. We are coming to a greater understanding of the power of kindness and charity. Thank you all.
Tuesday, November 13, 2007
The Clot spent another Family Home Afternoon gathered around a hospital gurney as we waited for Dr. Wills to perform a “tender-timerectomy.” This is a procedure by which Dennis is officially unplugged, allowing all his precious bodily fluids to drain internally, as nature intended. The procedure went very smoothly, and Dennis no longer has his bile bag.
Before and After
This has been a little hard to adjust to because we have all become rather fond of the rhythmic sloshing that has been so soothing of late. It’s somewhat like hearing the roar of the ocean in a sea shell held to the ear. But we will adjust.
The procedure went so smoothly and efficiently, that Dennis was administered more anesthesia than was ultimately necessary. Gee, the guy was schnockered! He was sleeping quite soundly. And while he was sleeping, the Clot had a little too much time on its hands. We began devising ways to bring him out of his stupor.
Nothing seemed to have much success until we wrote a series of “sick limericks.” Now we are sharing this bit of absurdity only because it reflects our euphoria at the success of this procedure. Euphoria has some interesting side effects. This is just one of them.
SICK LIMERICK # 1:
There once was a vial of bile
Whose removal made us all smile.
Dr. Wills made a cut
Rather close to the butt,
And the bile now flows down de-Nile!
Every time Dennis wakes up after a procedure, several nurses hurry in and ask him to rate his pain on a scale of 1-10. So when it looked like he was finally opening his eyes, we couldn’t wait to read him our limerick. Afterward, we promptly asked him, “On a scale of one to ten, how funny are we?”
His response was barely audible, but it sounded like he said, “Is zero an option?” At which point we could only assume the drugs were still affecting his sense of humor.
Meanwhile, Dr. Wills came in to show us the x-rays of the newly internalized stent. After he explained how successful the procedure had been, the Clot proceeded to throw spit wads at an image on the pictures that appeared to be a dark large mass. When we had run out of ammo, Dr. Wills patiently explained that we had just attacked Dad’s gall bladder. Thank heavens for surgeons who will be able to discern the difference! Otherwise, the Clot would open Dennis up and remove anything large and squishy.
Dennis finally opened his eyes and began to emerge from his sleep-induced stupor, and started issuing denials that he knew who we were. Oh, there were threats of striking his name from birth certificates, blah,blah,blah. But the girls didn’t mind. It is hard to deny paternity when their faces are exact duplicates of his. He then attempted to claim “anesthesia amnesia,” and we all got the brilliant idea of a sit-com entitled “Dennis Who?” Dennis ultimately agreed on consciousness under the condition that the limericks cease immediately. We are complying with the terms, but we’re murmuring in protest.
Saturday, November 10, 2007
As you know, we are preparing to begin radiation and chemo next week, so it was necessary to meet with Dr. Chen and Dr. Kim Jones. They are such qualified women, and gave us a whole lot of information (most of which went right over my head.) They discussed multiple drug names whose root words must surely originate in some sort of Latin expletive. The ultimate cocktail deemed most effective under the circumstances will consist of radiation with two different kinds of chemo. This is designed to shrink the tumor and achieve negative margins.
What a learning process this is for us. However, we have had moments of levity. While we were waiting for Dr. Chen, Erin began regaling us with her most recent culinary cravings. Apparently she got up early Friday morning with a strong desire for anything sweet. After rummaging through the cupboard, she settled on a blueberry muffin mix. With unbridled passion, she began spooning the mix directly into her mouth with mounting speed. When I asked if she took a moment to add water and an egg, she said no, because she didn’t want to add any unnecessary calories. Of course, her dilemma is that she now has half a box of mix, and she is not quite sure just how to measure out half an egg to make batter.
By this point, Dennis was laughing so hard he nearly popped his “tender timer,” as were we all. And as luck would have it, this was exactly the moment Dr. Chen walked in the door. We tried to compose ourselves and resume some semblance of dignity. We failed miserably. I’m sure we have firmly established ourselves as “those unclear on the concept.” Hey, nothing wrong with a little tumor humor.
Dennis will have his tender-timer removed on Monday, and we are all going to miss his slosh bag. Tuesday will be a day of respite. Wednesday there will be a dress rehearsal to make certain all the tattoos are in alignment. And if all goes well, let the show begin. We can’t wait.
This has indeed been a learning process. If you overhear us discussing the mass, and the words resemble harsh language, please know that we are just using newly-acquired knowledge of ancient pharmaceutical terms.
Here are the new vocab words for Friday, Nov. 9. 2007:
1. Chemo: powerful drugs administered to sensitize the mass cells and make them more receptive to radiation.
2. Chemo-Sabi: Native American expression or “Tonto-ism” meaning faithful companion who is always equipped with extra barf bags in case anyone is inclined to toss cookies. (Probably best appreciated by those who grew up watching “The Lone Ranger!”)
3. Necrosis: The process by which one gets a stranglehold on the mass and chokes it to death.
It is true that the human voice and human touch have healing properties not wholly understood. Our Family can attest to that truth. Thank you with all our hearts.
Thursday, November 8, 2007
With the hiatus from the hospital today, the Clot has had way too much time on their hands. Since the Hollywood writers are on strike, we have been honing our comedic skills, as evidenced below. Our "Tonight's Top Ten" bottoms out at number seven.
It's an interesting perspective to be on the other side of the stethoscope. Today was a day off from procedures. Dennis has gone through Haute Couture Hospital Attire withdrawl. He's becoming so used to the gowns that he neglects to tie them up. He has claimed "wardrobe malfunction" but the Clot has long suspected that he is really a closet flasher.
As you can tell from Yesterday's pictures, we were unable to arrange for J-O-A-N to be spelled out in block letters on his chest. The technicians claimed it was "gratuitous Tatts" and they do not indulge in "Chest Graffitti."
We were informed that the chemo would be too mild to endanger the two remaining hairs left on his head. They assured us that his nasal fur would also remain pretty much intact. So the Clot's plans to pull a "Britney Spears" and have a mass shaving of the heads has been shelved for the time being. Noting our disappointment, Dennis suggested that we substitute a ceremonial shaving of the legs instead. We have agreed to comply. We are all making sacrifices. (Weed Wacker Anyone?)
TONIGHT'S TOP TEN (SEVEN) LIST
Top Ten Terms You'll never find in a Medical Dictionary
1. Mass Avenger: Dr. Sean Mulvihill.
2. Mass Transit: The Whipple Procedure (My suggestion of blasting the @$&*% mass into outer darkness with my Sigourney Weaver fire uzi was duly noted by the medical staff, but ultimately rejected.)
3. Mass Communication: Harsh language, or calling the @$%*& mass any cuss word consisting of four or more letters and deemed inappropriate by polite society.
4. Ducts: What we're trying to keep in a row.
5. Duct Tape: Method by which we're keeping all of our ducts in a row.
6. Panache (pronounced Pan-Ash): Medical shorthand for "Ashton Pancreas".
7. Liver: What we're ultimately trying to be.
You must know that your love, faith and prayers are sustaining us at this time. We will ever be grateful. There are many things being done on our behalf, both seen and unseen. The Clot is struggling to find words to say thank you.
Wednesday, November 7, 2007
From Joan: As you can tell from the picture, the Ashton Clot is having another fun day at the Huntsman Cancer Institute. For those of you concerned that Dennis has been outed as a cross-dresser, we just wanted to reassure you that he is wearing the latest in Hospital chic, the GQ designer gowns.
Dennis is currently getting his "Tatts" or getting "inked". Apparently this is what the kids are doing these days, and we wanted to be up on the latest trends. I made a request that the dots, when connected, spell out "J-O-A-N" in bold letters. I didn't think this was an unreasonable request. However, the technicians did. As it stands now, if you try to connect the dots, your pen will get entangled in the chest hair. We hope if there's any hair loss with the "Radiation and a side of Chemo", it will come off his chest first.
Dennis and I want to express our gratitude and our love for the many messages of support, encouragement, and love. We are so grateful for the prayers that have been said on our behalf. We are overwhelmed. There are no words.
We are fighting the biggest battle of our lives. Thank you all for reinforcing our efforts. Every expression means so much to us, from the most eloquent words to the sweetest hand-drawn pictures from some of Dennis' patients. Three -year-old Ashton Ballou even offered to give Dennis a shot if he needed it. It does not get better than that.
By the way, the food that you have brought to our family has fed our souls. When Anne Crockatt asked what time we ate dinner, I panicked. So I just said, "Guess." As you know, dinner time at the Ashton household is nebulous at best. She guessed 5 o'clock, and I said, "You're right." Our whole family has loved the meals, and my daughters keep asking me if people really eat dinner like this every night. I said, "Of course not. This is just a special occasion." I didn't want them to know what they had been missing their whole lives. By the time Dennis goes to surgery, we plan to have him so beefy, the surgeons will think they're operating on Arnold Schwarznegger. We're just a few pounds short of our goal!
Pancreas Cancer is grim. We are bombarded with numbers and statistics. But I have learned a new word. That word is "ressectible." Mark Ott brought this concept to our attention. Mark also informed us about the "Whipple" procedure. And with these words, we have hope. When the odds were against us, the "Otts" were in our favor. For this, we will ever be grateful.
Please know how much you all mean to us and how vital your words of comfort and hope and love are. We may not be able to move the mountain, but you are helping us climb it.
Joan, Dennis and the Clot
Tuesday, November 6, 2007
Pancreas Cancer is not a good cancer to have. But our surgeon said that out of 100 people that come into his office, 90 are past the point of surgical option. Of the last 10, 4 would have severely compromised arteries and veins. So we are in the final six percent! And nearly every doctor we saw today commented on how my dad is in much better shape than most other pancreas cancer patients. So his good nutrition and health are going to give us another boost.
After a few more tests, we met with the radiologist, who discussed the radiation treatment. It looks like we will start treatment next week at the earliest. The treatment has to be extremely precise, so my Dad will have a CAT scan tomorrow to map out and pin point the exact location of the tumor. Then they will tatoo markers on his skin so they can zap the exact same location every day. The treatment will last for 5-6 weeks, five days a week.
In conjunction with the radiation will be chemotherapy. The main purpose of the chemotherapy is to make the cancer cells even more susceptible to the radiation. So we are calling it "a big dose of radiation with a side of chemo." We meet with the Oncologist on Friday, so we'll know more about it then.
After 10 weeks (5-6 weeks of treatment, 4 weeks of recovery) we will hopefully be ready for surgery. We are reminded that surgery is the only chance for cure for this crappy disease, and even then the chances are not in our favor. But that's never stopped an Ashton! The surgeon said "We are Shooting for a Cure" and so we are clinging to that mantra.
Please post comments- my Dad loves to read them!
A few definitions and references:
*Instead of "Tumor" we may refer to the "unwelcome guest" as the "BF-er". (Bloody Fracker) The two are interchangable.
*"Clot" refers to the Ashtons, and everybody else who has their brass knuckles on, including all of you.
*"Inked"- the street slang for the tatoo markers my Dad will get.
*"Tender Mercies"- the instances of blessings and little helps we are receiving daily, which seem to be piling up.
Love to you all,
Monday, November 5, 2007
My family and I started this blog because we realize that many people will want updates on our dad.
So here's the background. About a week ago, October 28th, my Dad started to show a little jaundice. (Yellowing of skin and eyes). On Tuesday, his doctor ran some blood tests, which showed elevated liver functions. We were hoping it was a virus. On Wednesday (Halloween) he had a CAT scan, and that evening we found out that the test showed a mass in his pancreas that was blocking the bile ducts, and causing the jaundice.
The radiologists reviewing the cat scan believed that the mass was consistent with Pancreatic Cancer. On Friday, the doctor at St. Marks did an endoscopic ultrasound, and basically confirmed our suspicions.
The good news: my brother-in-law is an expert in pancreatic cancers, and he reviewed my dad's tests and he believes it is operable. Now, 80 percent of people who present with Pancreatic Cancer are usually past the point where surgery could help. So it looks like my Dad is in that 20 percent where there is hope that surgery could get the cancer out.
Since the mass is so close to a big vein, the surgeon may opt for 10 weeks of chemotherapy (5 weeks on, 4 weeks recovery) before the surgery, in hopes that the mass will shrink away from the vein. We see the surgeon tomorrow, and after that we will have a better idea of our game plan.
But the important thing is: we have hope. And a game plan. And faith. Lots of faith.
We are so grateful for the overwhelming support and love of so many family members, neighbors, friends, ward members. We have come to the conclusion that for a family that can't seem to shut up, we are all at a loss for words when it comes to expressing our thanks.
We will keep you updated. Feel free to pass the blog along to people who might be interested.
the Ashton Clot