Thursday, January 31, 2008
Dearest Loved Ones,
We are waiting for Dennis to return to his room. Can't wait to see him. The "Mass"acre was successful.
here are the updates from the doctors:
Dr. Talmage Egan says:
The surgery has gone nicely. The surgeons are happy with how everything went. There was no vascular reconstruction, so the surgery was less complex. There were clean margins and Dennis was never unstable. There was moderate blood loss. The pain should be reasonable.
Dr. Jenny Davis:
Made three visits, beaming! "Everything went as well as possible." We are adopting her into the Clot. She and Talmage will get Christmas Cards for the rest of our lives.
Dr. Mulvihill: (summary)
Concurred with the other reports and then added: there is no evidence of tumor to the naked eye. We will await pathology reports on Tuesday (Please Keep Praying).
Also, Dad has an anomaly, a "funny pattern", a vein and artery in very strange places. Like a pretzel. They took pictures of it so they could show it to people, because he had never seen it before. These pictures will be on display for a small price of admission in the Freak Show, and then we will sell the footage to YouTube.
The Clot is tired, but happy. Your faith, prayers and love have gotten us through this day.
Check out his smile- and he was still asleep!!
Once they get the negative margin, then it will be 2-3 more hours of reconstruction. (that translates into 4 or 5 episodes of Veronica Mars).
This is all very good news. More updates, miracles and tender mercies to come.
P.S. Organ recall: Pancreas (partially absent) Gall Bladder (absent) Stent (obliterated) Ducts (all in a row) Veins and Arteries (in tact) Stomach (pending)
The big day is finally here! Dennis arrived at the hospital at 7:15. A short four hours later, he was in surgery. We met the entire team, and he's in good hands. The team even laughed at the Clot's jokes, so we liked them immediately. The nurses had to shave his chest, and the fur was flying. We hated to see it go because it added to the illusion of bulk. He also received injections of a drug they call the "I Don't Care" medicine, and once that had taken effect, we told the surgical team of doctors and nurses that his nickname is "Fabio" and please call him that from now on. The drug was apparently working, because Dad didn't care.
Dr. Mulvihill and Dr. Fenton came in to talk to us pre-surgery, and they brought with them such an energy, it was palpable. And now the Clot is in the Point restaurant, on the 6th floor of Huntsman, enjoying the view. At least, Mom and Brodi are enjoying the view. Erin's too busy stuffing her face with the small hide of a recently slaughtered cow.
Talmage Egan has been here from the beginning, guiding us through the entire process of this long day. He is awesome.
This day has been 92 days in the making, and it's finally here. The view is beautiful, and the inversion is gone. And we are all together. Tender Mercies, too many to count.
More updates to come. Scott, the surgical nurse, informed us he will be calling us every two hours, but since he's not the doctor, policy dictates that he won't be able to tell us anything. We'll be waiting for that informative call. We'll blog the lack of information as it becomes available.
We know you are all here with us. We are ever grateful.
Wednesday, January 30, 2008
This is it! Thank you for all of the support and prayers and good wishes on our behalf.
Greetings, Loved Ones,
Well, Dennis’ night was without incident. And in this household, that’s something to celebrate! A home-health-care nurse spent the evening with us hooking him up to every kind of drip imaginable. He looks like a marionette with all the tubes and wires, but this has become the norm. It is interesting how cancer changes everything. We’re not even sure just what “the norm” is any more. I recall going to a movie once, but that was another life altogether. And at one time we actually ate a meal, complete with chewing and swallowing. But that was before I discovered the joy of take-out (and the convenience of feeding tubes) I know it won’t always be like this…except for the take-out. But right now I point out a spot of Jevity on his ear as his worst social faux pas. I can’t wait until I can make discreet gestures indicating there is a piece of spinach lodged in his teeth. (By the way, Dennis calls his feeding cans “Levity.” That’s funny) The grandkids think it would be fun to try to drink a can of Jevity through a straw stuffed up their nostrils. The more I thought about it, the more it seemed like the answer to Sunday dinner. (Hey, we have to play to our strengths. Nasal buffets would be a gastronomical step up from anything I could concoct!)
It’s interesting how, under certain conditions, you get to know someone inside and out, literally and figuratively. For instance, I can tell by merely looking at Dennis just where his lab numbers are. I can tell by his color and demeanor whether his bili is up or his white blood cell count is down. And this influences our daily routine. For instance, he can’t wear his green sweater unless his bili is under 3.1. Those shades of yellow and green clash, and it’s soooo tacky. After all, it’s all about image, isn’t it? This morning, his “ducts” must all be in a row, because his pallor says he can wear his green sweater and be “runway ready.”
Dennis is very determined to get some exercise and maintain his six-pack abs, so he frequently pushes his IV pole in laps around the house. His phenomenal dexterity is still in tact, because so far he has neither hung himself on the tubing nor tripped over the hangee thingee. His workout sounds rather like a kid riding big wheels on a wood floor. But it is actually nice to hear the whir of the wheels and see the flash of his Superman jammies as he goes about his daily rounds. While he was in the hospital, I missed the little things that indicate his presence. And last night I slept soundly listening to the beep of the feeding tube as it infused his system with “Levity” at regular intervals. A quiet, empty house is not conducive to rest.
We are so grateful for the love and prayers of our family and friends. It is good to get your comments, telephone calls and visits. You don’t know what this means to us.We have even run into friends at the Huntsman. It is always good to see friends…just the venue is bad.
We have eight more sleeps and a wake-up before the “MASSacre.” I think I figured it wrong yesterday. It would be just like me to miscalculate the time and miss the Whipple altogether, but I was never any good with numbers.(Just ask me my age if you want proof). Anyway, the surgery is still scheduled for Thursday, January 7th. We will get Dennis to the hospital on time if I have to personally carry in his body parts individually. We can hardly wait to resect the little %*&#@. Recently we were talking about what we wanted to do with it when it is finally cut out. We liked Paul Jensen’s suggestion/curse: “May that damnable thing that took you to the ER rot on the festering forelock of Beelzebub!” (Don’t you love it?) And dear Wayne Kotter called it a name that made me ask if he’d graduated from West High, but he nailed it! (Couldn’t have said it better myself!) Sam, our son-in-law, suggested we put it in a jar, place it on the table, and humiliate it to death. (Sam has always been kinder, gentler.) I personally want to channel my inner Ripley and jettison the bugger into outer darkness and obliterate it until there is nothing visible left. Please feel free to share your innermost destructive desires, and we will pass the suggestions on to Dr. Mulvihill.
Have I mentioned lately how much your comments mean to us? We are able to understand Dennis better by seeing him through different lenses. We know the place he has in our lives. But it is so enlightening to see how he has touched the lives of others. (These are his most vital vital signs, after all). I guess that is really what life is about in the long run. We are all connected, and we are all an integral part of each other. I think that is a good thing.
So tonight, if all goes well, we will check his color for any sign of increased bili, do a few laps together in his Superman jammies and my Minnie Mouse night shirt (and you thought we didn’t have a life!) and raise a cup of Jevity to his health. And tomorrow morning, we will only have seven more sleeps and a wake-up until “Mass Obliteration!”
Our love to all,
Tuesday, January 29, 2008
As you know, we took Dennis to the ER last week because of extreme pain, weakness and boredom (he has been with me without respite, break, or stunt double for a while now, and I think he was just looking for a little excitement! And there is nothing like replacing a stent to provide just the diversion he was hoping for.) They admitted him to the HCI and provided him with shelter, round-the-clock nursing care and culinary delights such as ice chips, IV fluids, and lime green jello (This is Utah after all)
Dennis’ gall bladder made a major bid for attention, however, and provided lots of excitement with fever and icky stuff. Scans showed it doing things gall bladders shouldn’t be doing, and the doctors named those things with words which were eventually reduced to initials I can’t remember, but sounded serious. Then the surgeons and radiologists began debating whether the gall bladder should be removed or if a drain should be installed. Meanwhile, the Clot decided to stand and wait…and wait…and, well, you know. The scorekeepers kept us up-dated, and we had fun wagering bets, the winner of which got to eat Dennis’ jello. (Actually, so did the loser!)
Finally, in a stunning announcement from the medical team spokesman that no one could have predicted, it was decided that since the gall bladder had settled down on its own, Dennis would be discharged into my care if I signed a legally-binding pre-op saying I would vow not to cook anything ever again as long as I lived. I signed in a heartbeat, and took the man home. Once inside our four walls, however, he began a steady decline. This is enough to give me a complex. He hadn’t even been home for 24 hours. Now in the interest of truth in blogging, I honestly didn’t even open the refrigerator door, except to extract cans of soda pop with caffeine. I do admit that the frequency of that frenetic little exercise ratcheted up my sparkling conversation to the point of nuclear explosion, but hey, he’s used to that.
However, Hthe Clot gathered, counseled, and decided he should return to the hospital.
So Sunday afternoon the Clot caravanned once more up to the Huntsman, went directly to the fourth floor, greeted all our friends and fellow patients, turned on the DVD player, and began watching the second season of Veronica Mars. It was all so homey gathering once more around the old IV tubes. It was a Norman Rockwell scene of domestic bliss. With Dennis in the hospital, I have been spending increased amounts of unstructured time at home alone. Great amounts of unstructured time at home alone has made me realize how absolutely boring I can be. And suddenly my appreciation for Dennis’ gift of patience has increased in direct proportion to my personal boredom. Gee, the guy’s a saint. But in my own defense, I do take partial credit for preparing him for his up-coming surgery. I am the major contributor to his endurance factor.
As of today (Tuesday) we have ten more sleeps and a wake up until we go to surgery. WooHoo!
It has been decided that Dennis will come home today. I have promised upon pain of stoning in the town square that his only nutrition will consist of Jevity, sips of water with ice chips and the occasional oral reading of recipes from our new ward cookbook. And utter boredom to enhance his sleep.
More updates to come. Breaking news airs immediately.
Saturday, January 26, 2008
Good Morning, Loved ones,
This update will be coming in increments because that’s simply the way we live our lives these days. We are never quite sure just what’s going to occur. But here is how things stand as of the moment.
Dennis is still at HCI, where he has been since the midnight flight last Saturday. Since then, we have become acquainted with all the staff, including housekeeping. And we really like everyone… but we keep clicking our heels together and saying, “There’s no place like home,” … and everyone looks at us like we’re crazy. As you know, Dennis has a brand new shiny stent somewhere within the walls of his chest, but there has been persistent pain and nausea… completely unrelated to the constant presence of the Clot, we assume.
He is being treated with antibiotics for evidence of infection and fever, and he gets regular doses of Zofran and pain meds when needed. The doctors ordered an echocardiogram to check his heart, and besides showing an over-abundance of gratitude (yes, that actually showed up on the chart) everything looked great. They finally decided to do a CT scan of his gall bladder, and that little guy showed evidence of inflammation and irregularity of something or other. Its walls looked like they needed painting, and it might have lost some of its squeeze. (In the middle of an “Oh, Crap” moment, the doctors insist on trying to make me understand things, but that’s just like trying to reason with roadkill!)
So the dilemma is this: Do we operate on the gall bladder and push back the Whipple? Do we put a drain in and try to maintain status quo and keep the Whipple in its regular programming slot? Do we bring him home? Do we leave him there? Do we continue his feeding tube Jevity? Is Britney Spears going to get custody of her children? These are all the things we must decide.
So the Clot did what we always do in these moments of extreme stress and anxiety: We went to the Bistro, got French fries and diet Cokes, and watched Veronica Mars. Because of the severity of the issues on the table, it required three straight episodes without a potty break before we finally decided on the best course of action. (did I mention the size of the soda cup was extra extra gihugeous?) This is serious stuff. (I sometimes wonder if world leaders can’t bring about world peace because of “junk food deprivation.”) Anyway, Dennis is scheduled to have a drain installed in his middle domain this morning, so we may not be able to bring him home today. Bummer. The house has seemed so big, and quiet.. and clean… since he’s been away. This will never do. He needs to get back to Kansas, … and his little dog, too.
I have actually been able to get some things done, in spite of the long hours at the Huntsman. I even had my annual mammogram while I was up there. Mammograms are interesting things. What an experience. To the uninitiated, the techs issue hospital gowns that tie in the front and are designed to cover absolutely nothing. Then they escort you into a room with a contraption that has very ominous-looking vice grip-looking thingees in front. It does not require much imagination to understand what is about to take place. In an effort to accumulate enough flesh to compress in the “jaws of death” vice plates, the tech pulled body mass from every quadrant of my being. Then she scooped it all together like a snowball and bulldozed it en masse toward my sternum. She told me to take a big breath and hold it. and then she smashed it all… and I’m talkin’ “road-kill flat!” It was all I could do to stifle the primal scream… and the harsh language. It was a good thing she had included some of my tongue in with the mammary tissue and impaired my ability to articulate. When I regained consciousness, I asked her if she saw anything suspicious in the pictures. She declined to speculate, deferring to the radiologist, but she did assure me I wouldn’t need a colonoscopy for a while, and I should get a pedicure. Without the elasticity I had in youth, my body tends to retain the contours imposed by blunt force trauma. When I returned to Dennis’ hospital room, he knew right away where I had been… and he was in a Zofran-induced stupor! All I could say was, “Don’t ask!” Oh well, I hope my short-term memory loss kicks in and deletes the mental images before there is permanent damage.
By the way, cancer does have its privileges. The other day Andre Kirilinko of the Utah Jazz and his wife stopped for a visit and to take some pictures… although why he wantd pictures of us I don’t know. Anyway, he autographed pink hats for me and Brodi and a Jazz jersey for Dennis. We also gat a banner with his signature. He is such a nice fellow (and too shy to ask for our autographs). He is taller than he looks on TV, and the only one in the room as thin as Dennis. I was able to try out some of my high school Russian on him, and he even understood me. he seemed duly impressed with all four words, and began laughing. Gee, I wonder what I said. Oh well, when it comes to saying the wrong thing, there are no language barriers.
The Clot doesn’t exactly have a “bucket list.” For us a bucket is something you barf in, not kick. But after Dennis has the Whipple (does that name conjure up visions of a fussy old man squeezing Charmin?), we have decided to go on tour as Elvis impersonators. If we have learned anything, it is to not postpone plans and reams until too late. So when you see us in the Spring, get out your velvet and start painting our portraits!
Every day there is a little extra light grafted onto the lengthening evening. This is a good thing. We will make our way to February 7th one day and one organ at a time. For those who wonder how Dennis is doing on this roller coaster ride, I must say he is an emotional Samurai. He knows where we are trying to go, and he will not allow anything to deter from his appointed rounds. It is a privilege to know him.
We love you all,
Thursday, January 24, 2008
(Dad getting his PICC line)
Hello, Dear Ones,
My, how fast time flies when you’re having fun. I’m not sure just where this past week has gone, but perhaps by reviewing it, I can account for it.
Dennis is presently happily registered in a four-star private room at the Huntsman Resort. This is where he has been since the wild ride to the E.R. on Saturday night. And by the way, I guess I suffer from “series TV,” but when we arrived at the hospital that night, I had sort of expected Patrick Dempsey to be there just waiting for us. Lately I’ve been thinking I shouldn’t believe everything I see on TV. Anyway, because of the long holiday weekend, we were unable to have Dennis’ stent replaced until Tuesday. It had become occluded and was causing infection and pain. So for what seemed like an eternity, we were in management mode. Trying to deal with Dennis’ pain was the main challenge, but we had a fair degree of success with sparkling conversation, watching the complete DVD collection of Veronica Mars, and a whole lot of morphine. (They even gave some to Dennis!)
On Tuesday, Dr. Jason Wills replaced his stent. He is a remarkable doctor and friend, and after the procedure, he came in to explain what he did and why he did it. Apparently, and I hope I get this right, there was a lot of sludge build-up in his carburetor, causing toxic emissions and expulsion of particulates in the atmosphere. Dr. Wills put in a new stent, sucked out the bad stuff, and said Dennis was good to go until surgery. We were glad to get that done, but apparently there had been a fair amount of infection. So they put Dennis on massive doses of antibiotics, the names of which sound like guys I used to date. Then he spiked a fever, and it was determined that he should not be discharged at that time. I was disappointed, but deferred to the doctors’ decision (besides, we still have 24 more episodes of Veronica Mars to watch) He had a PICC line put in because he must remain on antibiotics until our date with Dr. Mulvihill, so it is back to the old Saran Wrap showers. Oh well, small price to pay for the opportunity of going to surgery. Nevertheless, I think we’re all ready to get out of Oz altogether. Especially Dennis. He’s been clicking his hospital socks with the grippers on the bottom together and repeating, “There’s no place like home.” He is getting his strength back, however, and yesterday he even crushed a styrofoam cup in his bare hands. We just have to work on recreational feeding and see if we can get that boy some contours. Not that a straight line isn’t a perfectly acceptable geometrical figure. Besides, as I’ve always said, curves and gender-defining attributes are highly over-rated.
And speaking of surgery, Brodi was able to download the Whipple procedure from the internet. We watched with great fascination, although it was rather graphic. Everything went smoothly in this surgical Whipple, and there was no occurrence of R.D. (medical abbreviation for “Resectile Dysfunction) It was easier to watch because the patient was anonymous, and the Clot had no emotional attachment vested in the guy’s duodenum. I am glad, however, that we will pace out Dennis’ procedure in our room watching anything but operations down-loaded off the internet. But as we say in Clotville,…”I’ll think about that tomorrow – when I get home to
Oh, how we love your comments. I read them to Dennis as he was coming out of the anesthetic, and he said he preferred them to goofy limericks. He kept asking me to read them again. Funny, he never says that about our rhymes. Thank you for taking time to join us on this journey. We cannot express our gratitude.
We are going to the hospital this morning to spend another fun-filled day amidst fluids, wires, needles and procedures. We will post up-dates with better regularity.
Our love to all,
Wednesday, January 23, 2008
We just wanted to give a quick update. Dennis is still up at Huntsman Cancer Hospital. He had his procedure to replace his stent yesterday, and unfortunately he's developed an infection that's keeping him in the hospital longer than we would like. He had to get a PICC line inserted from his arm to his heart (same kind he had for chemo) and they will use this to deliver strong antibiotics. Hopefully, we will be able to bring him home tomorrow, if we can go 24 hours without a fever.
We'll give a longer, much more entertaining, and thoroughly clever post later!
Sunday, January 20, 2008
Good Morning, Dear Ones,
I am chronicling this latest account while b.u.i. (blogging under the influence) of severe sleep deprivation. So please don’t condemn or hold me to a standard of ethics, taste, or political correctness for anything that is herein recorded. Even as we speak, Dennis has indicated with diverse hand gestures the sign for “ZIP IT, JONI!” However, he is, at the moment, tethered to the hospital bed by extensive IV tubing, and my distance exceeds his grasp. So my freedom of expression is ensured. Fasten your seat belts – this is going to be a bumpy ride!
Saturday afternoon, Dennis noticed the epigastric pain increasing, followed by shaking, tremors, spiking temperature and nausea ad nauseum. We were hoping these symptoms would gradually subside on their own, and they did, due, in large part, to my excessive pacing punctuated by frequent frantic requests for minute-by-minute updates on his condition. In other words, I annoyed him to the point that he settled the symptoms just to stifle me. This was wildly successful until about 11:00 p.m., when he woke me out of a soundless doze announcing we must proceed immediately to the ER. I was the model of composure, reacting like a well-oiled machine. I threw off the covers, threw on my clothes, threw open the door, and nearly threw up. And we drove through the night, with me telling him to try to breathe and try not to bear down, like a seasoned birthing coach. (Talk about unclear on the concept!) Poor Dennis had to endure both me and the pain, and we all know which was worse. We had a clear shot to the University Hospital, and made it in record time, in spite of a sudden and uncontrollable urge to pick up a few groceries at Dan’s on Foothill. We finally got him to the ER, and at first the admitting attendant couldn’t distinguish which of us was in crisis (I had arrived sans make-up, which accounted for the confusion.) After they cancelled the code red alert for emergency plastic surgery, the technicians switched their attention to Dennis, who by now was off the Richter Scale of pain. We feared it might be gall bladder, or worse, psoriasis of the liver. They administered high octane pain meds, and when they finally reached his midsection, Dennis visibly uncoiled, and his malalligned body contortions were able to resume the normal appearance of a humanoid. And then he slept.
It was decided to transfer him to the Huntsman because the blood work revealed a spike in his bili and white blood counts. I was glad for the nurses, technicians, phlebotomists (fancy term for people who monitor phlebs) and housekeeping staff, who scrupulously tended to his well-being, and made it possible to not get any sleep whatsoever. Once again, sleep is highly over-rated, and can impose discernment and discretion at random, which greatly inhibits one’s “blog blab.”
Right now Dennis is resting comfortably, in spite of the fact I have pen in hand, and we are waiting for the latest lab results, which will determine whether he will go in immediately for another stent replacement, or if we will wait until tomorrow.
Now this situation in no way derails us from our appointed date with Dr. Mulvihill. It is a mere bump in the road, a blip on the radar, a drop in the ocean…gee, I hate clichés! We are so determined for the surgery to take place that we have even imposed restrictions on Dr. Mulvihill.
We asked him to:
1. 1. Stop skiing for the next three weeks.
2. 2. Avoid pairs ice skating competition.
3. 3. Postpone synchronized swimming work-outs.
4. 4. Withdraw from the Tour de France.
5. 5. Swear off sushi.
He was compliant with all the requests except one – he claimed medical ethics would prevent him from performing simultaneous Whipple/face lift procedures. He diplomatically explained that he was a surgeon, not a magician, and the requested nip and tuck exceeded even his surgical prowess. But he did refer me to Dr. Phil. Oh well, I tried.
I will retire the pen now, until we get further information from the lab results and decide on the best course of action.
I’m baaaack! Well, after conferring with our fellow wizards, it has been decided that the stent replacement will take place tomorrow (Monday) This is very good because pain is very bad. We are still so euphoric about the news we received on Friday that nothing can dampen our spirits. But I must admit there are times during the course of this journey when I find myself borrowing a phrase from the grandkids, “Are we there yet?” But tonight we will gather around Dennis’ hospital IV and O.D. on Jane Austen, bull riding and relentless re-plays of the latest presidential primary results and be grateful for another “family hospital evening” together. This is a good thing.
More up-dates upcoming.
Our love to you,
Saturday, January 19, 2008
Dear Loved Ones,
You probably heard the hallelujah chorus shouting the news from the Huntsman Cancer Institute before even reading the blog that Dennis gets to go to surgery. It was a most singular moment, to say the least. And I want to tell all the details, because the situation warrants it. I just don’t know where to start. If you don’t have time to read it all, fast forward to the end of this message to the part that says how much we love you (although that sentiment will be liberally interspersed throughout).
Yesterday had been greatly anticipated and just as greatly dreaded by the Clot for a long time. Sleep was rather elusive the nights before, but then sleep is highly over-rated anyway. Besides, some of the best matches at the Australian Open are played in the wee hours of the morning. We saw a lot of tennis (and infomercials. I now know every remedy for every ailment known to man, and where to purchase it “for a limited time only”.)
Erin and Dave and the grandkids came over early.
Dennis had had a CT scan on Thursday, but we did not know the results. So many unknowns. And then it was time to leave for our long-awaited appointment with Dr. Mulvihill. It is rather a peculiar feeling to travel to a destination where decisions which determine one’s future will be pronounced. We talked a lot to fill the car. Dennis was quiet, but that’s how he is at his most loquacious.
Dr. Mulvihill came hobbling in with his foot in a walking cast. Did we mention that he had broken his fibula skiing with his sons in Tahoe? As he shook hands with us, we all examined his fingers for any sign of impairment. I think he has become used to strange and unusual behavior from the Clot. But hey, we’re placing Dennis’ pancreas, liver, gall bladder, duodenum, and stomach in those hands. We’ve got a lot vested in those fingers! After he was able to extricate himself from our grasp, he delivered the fantastic news that Dennis would be going to surgery. He waited patiently until the spontaneous cheering subsided, and then began explaining what he saw on the CT scan. Bottom line – Honey, we shrunk the mass! All the pain of radiation and the nausea of chemo, the barfing, the weight loss, the fretting, sweating and swearing paid off. We are going to surgery! Hooray! Game on!
Then, in an effort to further enlighten us as to the procedure, he began to explain just what that surgery entailed. My head began to spin. My main response was, “You’re going to put what where?” “Doesn’t he need those organs?” “Can you actually suture those two little things together?” Again, the “limited knowledge/great imagination” syndrome kicked in, and I had uncontrollable urges to tear off all my clothes and run naked through the hospital yelling “We’re all going to die!” I managed to get a grip on myself just in time to hear Dr. Mulvihill expound on all the worst-case scenarios and what would be the protocol under adverse contingencies. The last thing I heard was a hanka hair and a piece of bone. Then I went deaf and dumb (which for me is not that long a journey) I retreated into my protective mind-set of “therapeutic stupidity.” That’s the point at which I know just enough to be informed, but not enough to lose sphincter control. It’s a rather delicate balance. But in my defense, I am taking a correspondence course for a degree in rocket science, not pancreas surgery. Some things I just don’t need to know. I will let Dr. Mulvihill deal with contingencies. I will deal with staying conscious. (We all have our coping mechanisms). Besides, as I’m teetering on the precipice of a black hole, do I really need to calculate the square footage of a crevasse without parameters?
When the over-view of this marathon procedure was concluded, I asked the good Doctor what we could do to best prepare Dennis for the ordeal. He said there were three things we should focus on: Nutrition, exercise and attitude. Regarding nutrition, we had to reminisce just a little. Remember when food was something we chewed, and it actually came in colors other than liquid gray? Remember when nutrition entered the system through the mouth, and anything in the nostrils was not considered a valid part of the four major food groups? Remember the “art of the swallow,” and that teeth have an anatomical function besides lip retention? Remember the concept of appetite – that biological alarm system that triggers the sensation of hunger? Remember when my food consumption was not predicated on Dennis’ current health status? Remember when putting something “where the sun don’t shine” was figurative? Ah yes, I remember it well.
Dennis is very good at exercise. He pushes his feeding tube hangee thingee as he does laps around the house. He does this wearing his Superman jammies, and it’s a thing to behold. One day when he is especially weak and physically unable to restrain me, I will take a picture and post it. It really is worthy of inspiration and a good laugh! What a man!
Regarding Attitude. Dr. Mulvihill acknowledged our support system, as he nodded to each of us individually. He recognized we were a rather cohesive unit. But I wanted to say, “Hey Dude. You have no idea how much support there is.” We started on this journey across the croc-infested river in a rowboat, and you all have made it an armada. We are not there yet, but we can see the shoreline. There will be quite a multitude unseen in that operating room on Feb. 7. I think Brodi expressed it best last night when she called. She said, “Mom, I’m exhausted with gratitude.” Enough said.
Dr. Mulvihill said that he is “intending to cure.” And then he said the ultimate goal is NED. Translation: No Evidence of Disease. NED spelled backwards is DEN. I regard that as a good omen.
To all of you who have prayed so hard on our behalf, and have stood by to watch and wait, we can never thank you enough. We are exhausted with gratitude.
We love you,
Friday, January 18, 2008
Wednesday, January 16, 2008
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,
Monday, January 14, 2008
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”.
- Feeding tubes can be stylish – especially in ‘restyling’ the contours of the nostril.
- By having a feeding tube, one is able to avoid drinking formula from a manly Ute Football Fan cup.
- 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.
- 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.
- 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.
- 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.
- Keeps your skeletal body form from reaching its full ‘thin’ potential.
- 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.
- 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’.)
- Supplies never-ending jokes of “Hey, Dad. You’ve got something on your face. No, a little higher. A little higher. Perfect. Now, PULL!”
- Gas-siphoning becomes a little easier, though slightly more painful.
- Four words: Chicken Fried Steak Shake
- Gives "Stick it where the Sun don't Shine" new meaning. (Plus, I can say, "Been there, done that")
- No matter how much you grow to love the tube, you can always look forward to the day when it is no longer needed!
- Having to teach the grandkids that it’s still not okay to stick fingers up noses
- Having to teach Brodi and Erin the same thing
Friday, January 11, 2008
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 13th: Fast for Dad that the tumor has shrunk- We would love any participation, any way! (Light Candles, “Prayer Warriors”, Meditation, Positive thoughts, etc.)
January 17th: CAT Scan to see if Phase One had an effect on the mass.
January 18th: 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
Thursday, January 10, 2008
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:
- harsh language (strange, because that’s usually a panacea for all ailments.)
- invoking the name of Hippocrates
What DOES work in reducing fevers:
- 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!
Tuesday, January 8, 2008
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.
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.
Sunday, January 6, 2008
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!)
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?
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 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 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.
- 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.)
- 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.”
- I am going to single-task…or better yet, practice task deletion.
- I am going to sit down to talk on the phone.
- I am going to shred every to-do list and every deadline.
- Eat popcorn.
- Color with crayons and go out of lines.
- 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.
- I am going to take a vow of silence…for at least a few seconds each day.
- I will own up to being a frosting freak. I, however, solemnly vow not to change.
- I am going to lobotomize my inhibitions. (Yes,
, I actually do have some inhibitions!) Virginia
- I am going to try to avoid rehab for excessive jelly belly addiction.
- I am going to work on staying up past and still be compus mentas.
- 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.
- I will put some pictures in an album.
- Nightly accounting will consist of what was done, not what was left un-done.
- 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!
- 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!)
- Read a book in one sitting…beginning with War and Peace…while chewing bubble gum. (This is the only multi-tasking I will allow.)
- 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.