Tuesday, September 8, 2009

My Last Entry






On Thursday, August 27, 2009 we dedicated a park bench at Mt. Peak in Enumclaw in Jon's honor. The bench is in lieu of a headstone, a much more fitting memorial to a man like Jon. He loved to hike Mt. Peak, or I should say loved to run it with a backpack full of weights! We hiked it often together and I also used it to train for our backpacking so I could try to keep up with him when he returned from Alaska.

When I started this project I had a difficult time deciding where to place the bench. Anyone who knew Jon would say that he wanted the bench at the top and insist everyone made it that one mile, straight up to see it. However, I wanted it to be accessible to everyone so that each of us would have a place to be with him. I compromised by placing the bench near the trail head with a plaque that had his name, dates, and "See You at the Top." At the top of the mountain will be another plaque on a post that also has his name and dates with "Life is Not a Spectator Sport"

Most of the Nichols family was in attendance and we had a small dedication ceremony which consisted of the reading of Jon's favorite poem from "The Spell of the Yukon" by Robert Service and a prayer I had found tucked away in his desk. We also sang Amazing Grace then a few of us hiked to the top.

I hope that everyone will stop by to see the bench, hike the mountain and pay tribute to an incredible man.

Saturday, June 6, 2009

How Do I Feel???

For weeks everyone has been asking me how I feel and I finally came up with an accurate description....

I feel like Dorothy in The Wizard of Oz that has been sucked up in a Tornado for the last 3 years and just got dropped in the middle of Kansas. Hard to know what to do next.

I continue to be appreciative of all of the love and support given to me by my friends, family, colleagues and coworkers. You all continue to inspire me and will help me figure out this Yellow Brick Road

Tuesday, May 12, 2009

Grief

Grief is the strangest emotion. It is like every negative emotion you could possibly have all tied into one; sadness, loss, fear, loneliness, emptiness, anger, frustration, depression, and anxiety. I don't like it.

Some people have commented to me that they are surprised that I'm already back to work and taking care of (Jon's) business. It's not easy, but Jon wouldn't have it any other way and neither can I.

Sunday, May 10, 2009

It's been a while since I have felt like I can write, thus the photos and prewritten speeches. All through these last years and especially these past few weeks I have been completely overwhelmed by the love, kindness and support that Jon and I have received from everyone in our lives. Next week I start the process of writing the many thank you notes I need to give to each of you individually, but I just need to say to everyone right now deeply I appreciate each and everyone of you who have helped in a hundred different ways. I'm not sure words can every express the gratitude I feel.

For Christmas this year Jon gave me a cashiers check to buy myself a carbon frame road bike. Yesterday Lori B and I went to the bike shop and did some test-riding. I felt like I was flying on a bike that you could lift with one finger and that Jon knew I would enjoy. I cried most of our bike ride and on the drive home (new bike in tow). This time of year is most difficult because it was the time Jon and I did all the things we loved together. Fall was mostly hunting but Jon actually tried downhill skiing in the winter during the last couple years. He was really terrible at it:)

Today I got into our backpacking gear and for the first time packed my own backpack. It was something Jon always did for me. The kids and I made the trek to Greenwater Lakes in honor of Jon and to find a place to put the park bench we are dedicating in his memory in lieu of a headstone. We found our way nearly to the trailhead (big accomplishment for me) but unfortunately the gate was closed and the road was covered in snow. I know if Jon would have been there he would have moved the gate and drove us through the snow but I'm just not quite that brave in my Lexus and without him. Instead we had a walk along the river and a picnic lunch. It was a good opportunity to have some time alone with my children to talk about everything. When we got home we all made a nice dinner for my mom and then watched Mama Mia. I can't remember the last time I had Mother's Day with my Mom since they live so far away. I was a very special day.

I do have some good days from time to time but mostly at some part of the day it still hits me like a ton of bricks and every cell in my body aches for him.

Monday, May 4, 2009

My Talk From Jon's Memorial Service

My Adventures with Jon

For those of you who may not know me I am Lorri Nichols, Jon’s wife and personal cancer advocate. The two toughest jobs I’ve every had.

I would like to start by quoting the minister on our wedding day…

“A friend once told me that all true adventures share three equally indivisible components: high endeavor, questionable outcome and good companionship.” If my marriage to Jon does not qualify, I don’t know what does. For at it’s very heart, more than any other human undertaking, our marriage has required the willingness of two people to commit themselves wholly and without reservation to the most challenging of journeys. Demanding on a daily basis that you find yourselves, both individually and as a couple, the courage to commit unhesitatingly not to a known end, but to a process.”

When I married Jon, I knew my life would never be dull. Our courtship was full of fun, excitement and adventure. After our first date I began to receive UPS boxes in the mail on a daily basis filled with the latest, greatest backpacking gear. My kids and I were excited and filled with laughter each time a box arrived. Of course, I reminded Jon that this had only been our second date and that I may not like backpacking or even him. He said he was sure I’d like both and if I didn’t he’d just find another women my size! We backpacked, bicycled, hiked, worked-out and spent nearly all of our time together. We talked all hours of the night about, family, our children, business and all of the things that were important to both of us. He wrote to me long love letters (which he usually like to fax-I think that was the only technology he knew how to use) and gifted me over 50 songs that expressed his love. He proposed at least seven times before I finally said yes after a 10 mile straight up mountain bike ride to the top of Grass Mountain. He used to joke that if I hadn’t made it to the top he wasn’t going to propose but then would brag to everyone that I was the only women he knew that did so.

The year Jon was diagnosed he had told me our goal was to “Live Large”. Anyone who knows him would realize that this had always been part of his philosophy but now was really his time. He had found himself retired, happy, newly married, and ready to take on the world. Within months, he was diagnosed with pancreatic cancer and given two months to live. Even the strong and tenacious Jon Nichols was taken aback by the shock. It took him about a month to pull himself together and be willing to fight this dreaded disease. That became the rest of our marriage. Fighting together with every breath and fiber of our being to cure cancer. I still can’t believe that Jon and I together were unable to beat even pancreatic cancer. He is the only person I have ever known who is more stubborn, tenacious and bullheaded then I am, we felt unstoppable together. It was weekly chemos, monthly doctor’s appointments, and scans every six months. Jon fought more bravely and endured more pain then I thought was humanly possible.



Yet throughout this treatment we still had as much “adventure” as we possible could. For the first two years, albeit at a lower level, we continued to bike, hike, backpack and work out. It was only in January of this year that those things became impossible. Then we just held hands in the hospital, ate vanilla ice cream from those little dixie cups, read books, watched TV and cuddled. It was very difficult and not the way we saw our life but it was sad and sweet just the same.

Jon lived his life with extreme passion and adventure. As much as we will all miss him, I want to remind each of you that he does not want us to be saddened by his death. He lived a short, but very full life and did absolutely everything on his own terms. He is now at peace and no longer in pain. I would, instead, ask as all of you to honor Jon by also living a life full of passion and adventure. Conquer your fears, try something new, and never, never, ever be afraid.

Sunday, May 3, 2009

Jon's Eulogy by Staci Marquez Nichols

First of all, I want to say, “Dad, it’s an honor to give your eulogy, and I hope I do you justice.”

My dad was very special. He was the 2nd oldest of six kids. He used to love telling stories about all the mischief he made growing up. He used to talk about putting a line of slugs across the road in elementary school when he was waiting for the school bus. Then when the bus came, he would run to the back of the bus and watch as the slugs got run over. One of his favorite stories to tell was about making a pipe bomb in junior high. When the pipe bomb was set off in the neighbor’s backyard, it left about a 3 foot hole in the ground that my dad was very proud of.

My dad loved giving his parent’s headaches. Apparently, Grandpa Nichols wore himself out giving my dad spankings. My mom, Cindy, told me the first time she saw my dad was in 8th grade. She was leaving a Home Ec class with a dress she had just made. My dad grabbed the dress out of her hands, ran off, and returned wearing the dress over his clothes. If you can believe it, my parents went on to be voted “Senior Couple” by the time they graduated from Decatur High School.

My dad loved to play sports as well. He did basketball, track, and football. My dad always said that playing high school football was the best time of his life. My dad started to hunt during this time. He used to look back very fondly on hunting trips with Grandpa Nichols just the way Levi and I will look back fondly on those same cherished moments with our dad.

My dad’s first hunting passion was geese. He actually designed some of his own unique goose hunting equipment—for example, he made a low profile camouflage boat with a huge goose decoy on it that you sat inside of—and the purpose of this was to sneak up on geese out on the Columbia River. Whenever he shot a goose that had been banded with a tracking device by the Dept of Fish and Game, he always wrote in asking for information about the bird’s life. Each and every animal my dad hunted was sacred to him. Many of you may not know that he always carried around a Native American prayer in his wallet that he used to read over the body of his hunted animals. The prayer thanked the animal for giving its life and told their spirit that there place in the circle of life was acknowledged and respected.

After high school, my dad joined the Marine Corps. Granny told me none of her kids had ever been away from her before. When my dad left for the airport, she locked herself in the bathroom crying—unable to say goodbye. My dad called her from the airport and said his flight wasn’t leaving for awhile if she wanted to meet him there for one last hug—and she did.

My dad loved reliving his boot camp experience by watching Full Metal Jacket. He enjoyed reminiscing about when his Drill Instructor found a grain of sand on the squad-bay floor and threw all of the bunk beds out the 2nd floor window in anger…or when he was at the range with his platoon, and he asked the drill instructor which part of your finger was he supposed to use to pull the trigger. The Drill Instructor grabbed his hand, bit his finger, and said, “Right there.”

After the Marine Corps, my dad opened Nichols Truck Tire. My dad truly started out with nothing and worked his way to the top. For those of you who never had the pleasure of visiting his first office, it was a little bigger than a phone booth, and it was about 10 feet from the railroad tracks in Georgetown. The first service truck was my dad’s old yellow dodge, which we affectionately called ‘the bumpy truck.’ I remember my dad wore a moustache back then so he would look older and more mature to his customers. By the time my dad retired, he had 5 business locations and over 20 employees. Many of my dad’s employees throughout the years have told me time and time again that he was the best boss they ever had.

My dad discovered backpacking in about 1987. I remember the first backpacking trip I ever went on with him. It was 17 miles, steep, and in the snow! We hiked until well after it had gotten dark. I was in 2nd grade! My dad loved making annual trips to The River of No Return in Idaho, to the Pacayten (which is the most remote wilderness area in the lower 48), and to Basin Lake.

In 1990, my dad decided that he wanted to be a professional hunting guide in Alaska—in his spare time. There is a written test required to become a guide. My dad had taken the test twice and not received a passing score. I remember that was the only time I ever saw my dad nervous, as he waited for the results of his “last chance” test. When his results did come, they were accompanied by a letter saying that he had received the highest score of anyone who had EVER taken the test! I think this story speaks volumes about my dad’s persistence and determination.

My dad went on to guide hunters from around the world on some of the most rigorous and dangerous hunts on earth—for example, hunting the world’s biggest grizzly bears on Kodiak Island, as well as Dall Sheep and Moose hunts in the Arctic Circle. My dad had the honor of guiding retired NFL quarterback Jim Kelly on a hunt as well as the Vice President of Wal-Mart.

I once asked my dad if he’d ever been in a close encounter on a hunt. He told me once he was guiding a moose hunt, and the hunter was a horrible shot and had wounded a huge, mammoth of a moose. While the hunter was fiddling with his rifle or something, the angry, wounded moose charged at my dad. Now, you have to understand a moose is only a little bit smaller than an elephant. Before my dad had a chance to pull his side arm, the moose was on top of him. Luckily, my dad got off a shot into the moose’s chest and lived to tell the tale.

Legend also has it that on a lion hunt in Africa, my dad fired one shot from the jeep and against the instruction of his hunting guide; he ran out of the vehicle and chased after the lion until he killed it. There was another time deep in the Idaho wilderness, one of our pack llamas got heat exhaustion, and my dad hiked out 15 or so miles to the trailhead, found a vet to give him dome medicine, and IN THE SAME DAY hiked the 15 miles back to camp! I once saw a brochure from one of the outfitters my dad guided for and it referred to their “world famous hunting guide, Jon Nichols.”

While my dad was certainly macho, he said one of the bravest things he ever did was take me to a Tiffany concert in 3rd grade. He also escorted Lorri to the ballet, was known to have had a few pedicures, and he always had a BIG soft spot in his heart for little girls. In fact, my first memory is of my dad kneeling down to my eye-level when I was 3 years old. We were at the end of our driveway. My dad zipped me up inside his coat to keep me warm and explained to me how I needed to look both ways before crossing the street. He was so tender and made a point of always explaining why these things were dangerous—rather than just saying “because I said so.”

Growing up with a dad like Jon Nichols was very memorable and interesting, as you might imagine. He used to teach Levi and I Marine Corps cadences as soon as we could talk. When he was telling us something serious, he made us stand at attention and say, “Yes, Sir.”

Anyone who knew my dad knew that he was quite the health nut. He was always making these green, 12-grain, flaxseed, Omega-3 waffles and pancakes and serving them with organic pumpkin seed butter. He always wanted to know what your blood type was so he could grill you about your eating habits. He believed just about anything could be cured with Valerian Root or White Birch Bark. Growing up, Levi and I used to get scolded if we had croutons on our salad because they were full of preservatives. I can only imagine the reaction Lorri’s kids must have had when my dad whipped out his first batch on pancakes for them! To my dad’s testament, I can honestly say I have never had a Twinkie, a bowl of Capt. Crunch, or a Coke—and, for this, I am thankful. The other thing I am eternally grateful for is the firm handshake my dad taught me—and he taught us to always look the person in the eye when you shake their hand.

One of the last things my dad said to me before he died was, “Stace, I’ve always been a fighter.” There was never a mountain to tall for my dad; no challenge too daunting. When he decided he wanted to learn about the stock market or reloading bullets, he did it. My dad was his own man, who made his own rules. If there wasn’t a trail where he wanted to go, he blazed one. My dad used to say, “Life doesn’t care about your excuses.”

In 2003, when my dad started dating his chiropractor, Lorri, his life was just opening to a whole new chapter. He had just retired. He had braces for goodness sake! The outlook was so bright. My dad and Lorri had lots of good times, travels, and new experiences. I remember talking to my dad after he’d gone back to Pennsylvania to see where Lorri grew up, and he said it was like stepping into a Norman Rockwell painting back there. My dad was so impressed with “the Doc,” as he called her.

My dad used to absolutely love having these truly “perfect,” well-rounded experiences. When things just came together seamlessly and smoothly, my dad was really in his element. One of the things I remember my dad putting in that category was his wedding to Lorri. He so enjoyed being surrounded by his friends and family in a secluded mountain resort for an entire weekend.

Another thing that brought that perfectly complete experience my dad adored was having grandchildren. Another one of the last things my dad told me was that having grandchildren made it all worthwhile. He loved being his granddaughter Maelie’s horsey. One of his last projects before he died was to buy a beautiful 20-gauge Bennelli for his grandson, Wyatt. Apparently, the morning after my dad passed away, Maelie woke up and asked for Grandpa Jon.

Sometimes it’s easy to think my dad got cheated out of life, but he constantly reminded us that he had no regrets and lived a truly blessed life. My dad knew that his diagnosis was little more than a death sentence, but that didn’t stop him from approaching pancreatic cancer with the same tenacity and fearlessness as he approached everything else. Pancreatic Cancer has a one year survival rate of 3-5%. It is the most deadly kind of cancer. My dad was originally given 2 months to live, so 2 ½ years was a real accomplishment. In those 2 ½ years, my dad received over 60 chemotherapy treatments, lived to see both of his kids get married, and had a grandson. Not bad! Levi and I can never thank Lorri enough for all of her research and advocating and nursing and chauffeuring that made those 2 ½ years possible.

My dad always wanted to teach people and coach people and guide people. I think even in his death, he has much to show us. He fought bravely and without self-pity right until the end—until it was time to stop fighting and to let go. I cannot begin to impress upon you the peace and tranquility he knew in his last few hours. Any one of us would be blessed to know that kind of peace even for a minute. I think it’s so appropriate that my dad passed away in April because, like the month of April, my dad came in like a lion and went out like a lamb. My dad’s death taught me how important it is to accept things and people the way they are.

To quote my dad’s obituary, “He will be deeply missed and remembered with honor and distinction forever.” Now it is time to go out into the world and tell the tall tales of a man who once was known as ‘Big Jon.’

I would now like to invite anyone up to the microphone who would like to share a story or memory of my dad.

Wednesday, April 29, 2009

It was very strange going back to work today. The first thing that hit me like a ton of bricks was the fact that life goes on with or without Jon or I. It seems so strange that the rest of the world didn't come to a screeching halt when Jon died.

Kelsey and I had decided the night before that it was a good idea to bake chocolate chip cookies at midnight so I was a bit tired in the morning but well worth the time with my son and our new puppy. I had my prescheduled monthly acupuncture appointment at lunch time so it gave me a chance for a nap and a little healing energy.

The afternoon was a little easier and I'm glad I eased into a day without trying to start with a full week.

Tonight Lori B. Liz and Marcus joined me, Kelsey, my mom and dad for dinner. We are in this heat up and serve mode from all of your wonderful contributions. Thank you for everyone who brought me food so we can continue to gather and have meals at a family with minimal effort.
As anyone can well imagine this has been a challenging week but I have been blessed with a tremendous amount of love and support by my family and friends. Everyone both grieves and heals in their own way and it been a process going through it all together. Staci has been leading the charge for Jon's memorial service. I basically follow her around and say "yes, I like this, no, I don't want to do that" and occasionally have an idea of my own. She is doing a tremendous job and we are determined to make Jon's memorial a celebration of his unique life. Levi has been here every day sorting and packing all of Jon's belongings. Both of those things would break my heart to do by myself and I will never be able to thank them enough for taking care of all it. Elizabeth tried to go back to Bellevue the Saturday after Jon's passing but ended up crying hysterically all day and returned home Sunday to spend the rest of the week with us. She is doing better but says it will be a long time until she can stop crying. Kelsey handles his grief by sleeping for days on end (just like my Dad!) but has started going back to school half days this week. My children and parents mostly hug me, feed me, hold my hand and tell me they love me. It is a huge comfort. My brother and sisters arrive Friday and I am looking forward to seeing them. A member of Jon's family checks up on my everyday and are always standing by for me should I need anything. They have also been a huge blessing

Today I am going to work today so that Jolene can have at least one day off in these past two weeks. She and my staff have been unbelievable and I appreciate everything they have done to allow me this time to be with Jon and the family. I will start back for good next Monday.

Kelsey and I have been wanting a dog for a long time and decided Sunday was the time to get a puppy and have some new life in our home. I wasn't sure it was the smartest thing to do right now but since my parents are here for a month or so they can help us with all of the initial training. His name is Marty and he is absolutely adorable. I think the companionship will be good for Kelsey and I.

Saturday, April 25, 2009

Jon's Obituary


Jon E. Nichols was born on March 30, 1955, and died on Thursday, April 23, 2009. He bravely battled advanced pancreatic cancer for 2 ½ years. He died peacefully surrounded by his loved ones.

Jon was the son of Nadine and Paul Nichols (deceased) of Federal Way, the current husband of Dr. Lorri A. Nichols of Lake Tapps, the former husband of Cindy Nichols of Prescott, AZ, the father of Staci Marquez-Nichols of Beaumont, CA, and of Levi Nichols of Puyallup, the brother of Steve Nichols of Federal Way, Tonya Lenting of Enumclaw, Kristi Frawley of Buckley, Dan Nichols of Tacoma, and Tim Nichols of Puyallup, the step-father of Elizabeth O’Hollaren of Bellevue and Kelsey O’Hollaren of Lake Tapps, and the grandfather of Maelie and Wyatt Nichols of Puyallup.

Jon said playing high school football was the best time of his life. He was very proud of his time serving in the Marine Corps. After the Marine Corps, he started Nichols Truck Tire and, by the time he retired, he had over 20 employees and several business locations. He was also a professional hunting guide in Alaska and a successful investor and real estate mogul.

Jon was passionate about hunting, guns, backpacking, working out, lifting weights, mountain biking, and martial arts. He loved to watch documentaries and read about history and nutrition. He enjoyed cowboy poetry, country and folk music, health food (and ice cream), telling stories and jokes, and being with his family and friends.

Jon was larger than life, a true legend. He influenced everyone who was close to him in more ways than he will ever know. He was known for his tenacity, discipline, toughness, business sense, fearlessness, adventurous spirit, connection to nature, healthy lifestyle, hearty sense of humor, and his quirky sayings and nicknames.

He will be deeply missed and remembered with honor and distinction forever.

A memorial service will be held at Brooklake Community Church in Federal Way at 10:00AM on Saturday, May 2, 2009. Donations may be made in honor of “Big Jon” to Safari Club International, Seattle Cancer Treatment and Wellness Center, or the Seattle Cancer Care Alliance.

“Life is not a spectator sport.” –Jon E. Nichols


The obituary will be published in the Seattle Times and Tacoma News Tribune on Sunday, April 25.
That's on Saturday, May 2.
Jon's Memorial Service will be held at Brooklake Community Church 629 S 356th St. Federal Way, WA at 10 am.

Friday, April 24, 2009

Jon passed away in my arms tonight at 10:12pm. Staci had been sitting with him playing some of his favorite music and had taken a break to get some food. I lied down and sang to him from the songs he had gifted me during our courtship.
It was peaceful and loving, just how we wanted it. Staci, Octavio, Levi, Elizabeth, Kristi, Kelsey, Ericka, Wyatt, my mom and dad were there within minutes to share the moment with us.

We are planning a memorial service next Saturday, May 2 at Brooklake Community Church in Federal Way. We will give you more information as it becomes available.

Thank you to everyone for your love, support, prayers and positive words throughout this journey. We could have never made it this far without you.

Thursday, April 23, 2009

Jon had a difficult night. He seemed agitated and had difficulty breathing. I gave him oxygen and I don't think it helped much but it at least made me feel like I was doing something. I also increased the dosage of his Adavan which seemed to help a little. The Hospice nurse arrived this morning and prepared us all for the possibility of Jon's passing. When she checked him she felt that I should prepare the family for the possibility of today or tomorrow. During the night and morning Jon was moving his arms and legs and making all kinds of growling sounds...like he was trying to tell us something. The nurse told us that when people go through the process of dying that they spend their time thinking of their lives and remember not only the good, but the regrets that they may have had. They also worry that the people they love are not ready to let them go. She felt that it was important that we all let him know that we are OK with his passing and that each of us will be able to go on without him, that we love and appreciate him, and forgive him for anything he might have done that was hurtful. Staci and I called all of the family and everyone in the area came over and had some private time with Jon. Cindy called and talked to him on the telephone. Once each of spoke with him personally we all congregated in the bedroom and Staci led us in a prayer. It was a beautiful moment and brought tears to everyone's eyes.

Jon seemed much more relaxed after both the individual and group sessions. The nurse also provided us with some additional medications for relaxation. The family all spent the day and continued to visit with Jon throughout the afternoon. Tony not only cooked dinner but with Dan's help also fixed my broken barbq. Around 7:30 the rest of the family headed home and Staci, Levi, Ericka, Octavio, Wyatt, Liz, Kelsey, my mom and dad remain. Jon has stopped growling, flailing and seems to be resting comfortable. His breathing is labored and gurgling but he finally seems at peace.
Jon rested comfortably all day today. Staci and Octavio arrived early in the morning to take over nursing duties. Kelsey stayed home from school and he and I ran some errands and had lunch together at our favorite spot. More family and friends came by to visit with Jon and spent the afternoon and evening. Today Jon actually opened his eyes a few times and acknowledged his visitors from time to time. He even managed an "I love you, Pooh." when I gave him his most recent dose of meds.

He received his last rights today at Granny's request and everyone felt that the ceremony was meaningful. I can't imagine being in Granny's place and admire her strength and perseverance.

Sandy arrived early this morning with large crock pot full of soup to feed all the troops throughout the day. Tonya came by with more of her famous cookies.
Kristi brought me a beautiful bouquet of tulips. My mom cooked her delicious breaded chicken. Dan and Levi called me first thing this morning asking me exactly what I want and need for today.

Tonight Levi and I worked on making and mailing statements to Jon's properties so that he, Ericka and Staci can begin to assume some of the responsibilities that are ahead of them.

Wyatt was here most of the afternoon and evening to give us all our dose of "Baby Chi"

I don't even know who all to thank anymore. All I know is whatever Jon and I need there is some family member or friend standing there to provide it.

Wednesday, April 22, 2009

Jon slept comfortably all night. I think we finally have found the right combination of the right drugs. I had requested IV morphine yesterday but the doctor said that his veins have become inaccessible and that he cannot have another port due to the high risk of infection from the last one. All the meds but the oxycotin are liquid or topical and need to be given every two hours. I had the night shift, Staci will be over today for the day shift while I sleep.

Nearly all of the family had an opportunity to visit yesterday and I am grateful for their support and the opportunity for everyone to pay Jon their last respects. My parents are here and Elizabeth spent the night last night with us. I ended up falling asleep on the couch holding Kelsey and Elizabeth's hands (well at least between the 10pm and 12 am medication doses). I am hoping that the next few days are quite, loving and peaceful for Jon.

Thank you all for your continued prayers, kind words, and support.

Tuesday, April 21, 2009

Jon slept comfortably until about 11 am when all hell broke lose for the second time. I was going to lie down and take a nap with him until the nurse arrived and he was not due for an oxycotin until 12. He seemed to be getting a little restless so I thought I would give it to him a little early. The nurse had sent me double the milligrams by cab but even that was not enough to make a dent in his pain. Thankfully, Kristi arrived right around that time and was able to help me get him to the bathroom (where he was determined to go with or without us), call the nurse and get as many meds down him as possible. It was terrible to see him suffer like that. Finally with a combination the new liquid and topical forms of medication we were able to get him comfortable and back in bed. He is sleeping and under heavy sedation.

The Train Derails

Jon continued to have an excellent day on Monday. Martin spent the night so he and Jon went out for breakfast before Martin caught his plan to guide in Alaska. I took a long lunch to take Jon to some appointments the brought him back to my office for a one hour massage. My parents picked him up and they took him to all the local sporting goods stores to find a double-barreled shot gun for Wyatt and then to Dairy Queen for Peanut Buster Parfaits.

We all arrived home around the same time and when I walked in the door Jon was talking on his phone a yelled "Quick Doc, get me a long one (oxycotin)." By the time I got there with the medication he was doubled over in pain. I got him up to bed and gave him another 20mg of oxycodone, none of which touched the pain. No matter what position he tried to move he experienced severe, sharp pain in his right lower abdomen. I called the hospice hotline and they were able to send the nurse out within an hour or so. The longest hours of our life. I continued to give Jon more and different meds per the nurses instructions but they only seemed to make him dopey but not alleviate his pain. Any time he moved it was the same searing pain. When the nurse finally arrived she evaluated him and found his stomach hard and distended. Jon kept telling me he thought his ascites was improving but my mom and I both thought it was looking worse since the return from the camping trip. His abdomen also went from soft and squishy to hard and tight. The doctor had discontinued his lasix and spirolactone (diuretics) last week because his blood pressure was dangerously low. The nurse checked it tonight and we decided to give him those meds to take some of the pressure off his abdomen. She catheterized him and got him in a comfortable position. He slept through the night and was so dopey at 4 am when his next pain meds were do I had a very difficult time getting them down. I think we may need to switch to a patch or IV for pain meds if this doesn't improve quickly. A call has been place to Dr. Lin and his regular nurse will be out today. They are not sure what exactly is causing this pain but are going to rule-out appendicitis with bloodwork today. We know that his cancer has spread to his abdominal cavity and it is possible the pain is a combination of cancer and pressure from ascites. I should know more by noon today.

Monday, April 20, 2009

Jon's Hospice Party

Only Jon Nichols can turn Hospice into one big, continuous party! When the Hospice nurse visited for the first time you could tell by her words and demeanor that not only did she expect Jon to never get out of bed, but also to not be around for more then a few weeks. Wasn't she surprised when she visited last Thursday to find Jon up and walking around the living room and rushing her out the door so we could get on with our day. Now don't get me wrong, he is still skinny, weak, and sometimes confused, but he is determined to continue to live his life to the fullest, whatever that may be.

He enjoyed his camping trip this weekend but called me every hour to come out and join them. Of course, I told him 100 times that I had an office event that we had been planning for 6 months and was unable to take the day off to join him. I also finally was able to get out on my bike with Lori and Mari on a beautiful Sunday morning for the first time this year, it was wonderful and therapeutic. Nevertheless, Jon and company had a great time. Thanks especially to Tony and Jake for organizing everything to make it a success and to Levi for making it out there with Maelie even after a long week of work, working early Saturday morning, and being all around a fantastic son.

After camp broke up Jon and the Bartran clan headed further into the mountains to do some shooting. I received a call from him in the early afternoon that our friend, Martin would be in town for the next 24 hours and that he and the 6 Bartan's would be joining us for dinner. Dave and Meg Bartran live near Vantage with their four boys and were gracious to drive Jon all the way home before heading back to Eastern Washington. Martin arrived around 4 and had a good visit with Kelsey before everyone else showed up. The rest of the gang arrived an hour or so later and the party begin. Martin is a talented musician and entertained us all while my parents and I prepared dinner for 13. Jon called Rex to join us and he arrived just in time for dinner. My dad sang some Johnny Cash with Martin, while I joined him for a variety of songs after dinner. It turned into quite the festive evening and Jon seemed to thoroughly enjoy himself.

Jon continues to buy camping gear and plan hunting trips. Just in case anyone is wondering, Jon has far from given up. They are all going camping again next weekend. My home is a continuous flow of family, friends, and assorted visitors. My parents have been a tremendous help in every way and I am grateful for their extended visit.

Thursday, April 16, 2009

Today was another good day for Jon. He woke up fairly early, cooperatively took his meds, and ate a good breakfast. We spent the morning taking care of more medical and legal issues then had lunch in Enumclaw at The Mint (another favorite in the early years of our dating). When we returned home Tonya, Kristi, Ann, and Dorsal came by for a visit and Dorsal and Jon went to Sportco for more camping supplies while Tonya, Tony and Ann made dinner. Kelsey and I went to our counseling appointment which was fairly helpful but by the time we got home Kelsey had a migraine headache and went to bed after an adjustment and some biofreeze.

Tony, Levi and Jon are definitely going on this camping trip and I am hearing rumors of the Bartran Clan joining them. I have to work on Saturday for our Spring Into Health event and Kelsey is committed to yard work. I am sending Jon with all his meds and instructions under the care of Levi and Tony. My parents arrive tonight and we are thrilled to have them staying with us. Everyone keeps asking me how long they will be here and I respond, "Until I tell them they can go home."

Wednesday, April 15, 2009

Yesterday we changed some of Jon's meds to reduce the ammonia in his blood stream, move his bowels, raise his blood pressure, and treat the thrush in his mouth. He awoke this morning feeling pretty darn good. He got out of bed, took his meds and went downstairs to make breakfast. Cathy Mortell arrived at 8:15 for instructions and her day of Jon-sitting. After she made him breakfast he had her drive him all over the creation to get a haircut, shop for more hunting, camping gear, get a massage, etc, etc. They stopped by my office where we had lunch with our friend Diane Lane who stopped by for an adjustment and some moral support. We always call Cathy our friend who is "crazy in a good way" and she proved true to her reputation by keeping us all laughing today.

Although Jon still is somewhat confused, lost his wallet, cell phone, etc. etc. (we retrieved both) this is probably the best day he's had in a long time. This morning he asked me why there is currently no treatment plan for him and then commented that he thinks there actually hasn't been for a long time. I reminded him that Dr. Lin had wanted to start the platinum based chemo initially but Jon was too sick and weak. Then he tried to start the Gemzar but that day Jon's blood chemstries were off the charts and there is no doubt in the doctors or my eyes that a chemotherapy that day would have killed him. I did however, also remind him that Dr. Lin did say that if he regained his strength and his blood chemistries normalized through hospice that he would reconsider more active treatment. Jon wants everyone to know that he hasn't given up the fight and probably never will.

He's trying to talk Levi into a camping trip this weekend....

Tuesday, April 14, 2009

I've probably said this every day for weeks, but today was another emotional and eventful day. It began with a meeting between me, Jon, Staci, Levi and our estate planning attorney, Dan Farr. Although it's important and appropriate to discuss all these details it is always very difficult for each of us. I did my first will many years ago when my children were small and I wasn't faced with a serious illness. It takes on such a different context when you think you could die next week, next month, or next year. I am appreciative that we all had the opportunity to sit down together and come to an understanding of Jon's wishes and the content of his will.

Next, we all went out for breakfast at The Kettle in Enumclaw which is one of the Nichols families favorite places and an early breakfast date for Jon and I when we first started dating. We returned home in time to meet with the social worker who discussed any family, social or emotional needs that we might have. She provided with information on how to proceed at the time of Jon's death and how to plan a funeral. Thankfully, Staci is taking on some of the leg work on that for me. It seems morbid, sad and I just can't do it right now but I know Staci is right and we need to be prepared when the time comes. I am appreciative that she is willing to do this. Levi stayed most of the afternoon and had was sent with a list of errands from Jon for the rest of the day.

Next came them home-visit nurse. She discovered Jon's blood pressure had dropped to 60/40 and immediately called his oncologist to make some adjustments in his medications. They are stopping the lasix and nanadol and adding some new drug that is supposed to diminish the ammonia in his blood so he can think more clearly and help his bowels move along. Of course nothing is simple, Staci and Kristi stopped to get it on the way to the airport and the pharmacist didn't have all the information they needed to fill the appropriate prescriptions. I just received a call from the nurse that everything is ready to go and I can pick it up while Jake and Ann are here with Jon. Tony, Kristi and Tonya all stopped by today, too.

Jon continues to buy sporting goods equipment and planning camping trips. He remains determined to beat this thing. I have to admire his tenacity. Tony figured the worst case scenario is that we can set up his new wall tent in the back yard and spend the night with him out there! He also asks me every time I give him a pain pill why I just don't find a doctor who will cut out that huge tumor!? I told him I've been trying for the last 2 1/2 years and so far don't have any takers. He is and will always remain quite a character.

Tomorrow Cathy Mortell is Jon-sitting, Tonya is lined up for Thursday so Kelsey and I can do a marathon counseling session and Kristi is on for Friday. With any luck my parents will be here by Thursday night and we can settle into some type of routine.

As always, thank you to everyone for all of the phone calls, text messages and emails. I know that I suck at returning them but I truly have my hands full with juggling all this. I appreciate every one of you and will answer you when time allows.

Sunday, April 12, 2009

I feel like it has been weeks since I've written anything so much seems to be happening so fast. Since Friday there has been a trail of friends and family traveling through our home.

Kristi was kind enough to arrive early on Saturday morning to allow me time for a bike ride which always helps me maintain my sanity. I then was able to visit Maelie at the hospital to give her her Easter Basket (she got out today and is doing fine) and finally got myself a haircut. When I returned home Staci, Kristi, Tony Tonya, Kyle, Levi, Ericka and Wyatt were there for our Easter Eve celebration. I've learned every holiday must have an eve associated with it if we are going to make the rounds with all the families. Since I was cooking Easter dinner on Sunday we all settled for frozen lasagna, salad and french bread with hot berry pie and ice cream for dessert. Not bad for a quick, thrown together dinner.

When I first arrived home Jon was in bed with Kristi, Tonya and Staci rubbing his back and skin brushing his feet. He really has quite a harem going. We were following all of the medication instructions and I would say Jon was definitely not in pain but boy oh boy was he loopy. He is quite humorous when he's all doped up but we decided on Sunday to back things down a bit to provide a bit more lucidity.

We managed to make it to church on Sunday morning albeit a half hour late. After church Elizabeth, Kelsey, Nadine and William Mortell did the customary Easter Egg hunt. Liz was the lucky one to find the golden egg with the $20. Cathy and I made dinner while Jon and Bill did some visiting. (I'm not sure what all Jon said but I warned Bill in advance it might not make much sense). It was great having my kids together at home for the first time in a long time and the Mortell family is always a blast.

Staci spent the evening with us and she and Jon were able to catch up on some things. She will be back tomorrow along with Rex to take care of Jon while I work.

Kelsey is still up and down. What seems to overwhelm him the most is all the conflict in emotion and the sadness feels when he sees Jon so weak and disoriented. We are receiving lots of support from his friends and their parents and we are both scheduling massage and counseling appointments this week.

Levi and Erika were able to spend Easter with Ericka's family and today was to be the big day for Wyatts first taste of rice cereal. Maelie was out of the hospital in time to spend part of Easter with them, too. Levi's stress level is still running high and I wish there was more I could do to minimize it for them.

I just took a hot bath and am ready to give Jon his nightly skin brushing. The hospice nurse visits again tomorrow.

Last but not least, Audrey is home from the doggie hospital and snuggled up with Elizabeth at home :)

Friday, April 10, 2009

PS

Thank you to everyone for your many phone calls, text messages and emails. I am too overwhelmed right now to answer you all individually but I want you to know that the love and support of my friends and family is what has and continues to sustain me.

Hospice

Today was another eventful day. Krist was here first thing in the morning with a extra hot latte for me and a mango vivano for Jon. I went into work for a few hours just to get the necessities done and was home by 11 to meet with the Hospice nurse. She was very kind and informative. We discussed our goals (managing Jon's pain, improving his appetite.) She went over his meds and was absolutely mortified to find that the last pharmacy had given him the wrong long acting Oxycontin, instead it was just a higher dose of the short acting that he was already taken. The way it was labeled was absolutely impossible to tell the difference until she looked at the pills themselves. So basically he has been under medicated all last week. No wonder he has been so miserable! I thought the nurse was actually going to break into tears knowing how much Jon has been suffering. She held his hand, looked him in the eye and said "Jon, you don't have to hurt like this." She phoned in the correct prescriptions and Granny and Steve picked them up for me on their way to visit.

We started him on the new dose of long-acting Oxycontin and he had some immediate improvement in his pain. He is very loopy and confused...he even tried to get me to put his suspenders on his address book??!! but he does not have any pain to speak of. I gave him a bath (yikes was that bathwater black!), a good skin brushing, and a bowl of ice cream with strawberries. He is the most relaxed I have seen him in months. He is being very sweet and appreciative. When he was in the tub he looked at me and said "Doc, I can't believe how beautiful you are." It nearly made me cry.

Kristi continues to be our angel. She spent the day helping with Jon, fed us dinner, and is now on the way to pick up Staci from the airport.

Kelsey is feeling overwhelmed with emotion and is processing in his own way...time alone and the time with his friends. He says he's OK and dealing with it all but I worry constantly about him.

Levi just returned from the hospital where Maelie was just admitted for intestinal ileacus. She has been vomiting and in pain all week. Emilie has had her back and forth to the doctors who finally admitted her today for tests. They are planning on keeping her overnight for IV fluids and bowel rest. Levi, Ericka, and Wyatt are all snuggled at home for a little bit of piece and quite. Today was Ericka's day for a complete meltdown and Levi was right behind her.

Elizabeth has stopped vomiting but her little dog Audrey is very sick from being neutered earlier this week. She is currently taking her from the regular vet to the emergency vet for constant monitoring over the weekend. Please add our little dog to our long, long list of prayer request.

The hospice nurse expects that Jon will be pretty loopy for about three days but then seriously expects him to be more functional when he gets used to the higher dose of oxycodone/Oxycontin. I am really appreciating the pain being under control and the turn-around in his demeanor. It makes me cry to think he has been suffering like this needlessly. I am hoping for a few better days ahead.

As for me, I am just putting one foot in front of the other.

Thursday, April 9, 2009

I'm back for now

Hi everyone. It's been a while since I have had anything to say. Mostly because I have been having a complete emotional, physical and psychological breakdown. I had some time with my family back east (my sister, Barbara and her family) and I have now regrouped and am able to move forward with this most difficult portion of our lives.

Jon has been slipping rapidly in the last few weeks. He is very confused and paranoid (secondary to liver failure and narcotics) and in tremendous pain. He sleeps 20 hours a day and for the last week could maybe get up for a few hours to do some work at his desk or watch TV. Monday and Tuesday seemed the usual, but on Wed he slipped to a much more serious level. When I left for work I had asked him if he wanted some breakfast. He replied, "No, I'll get up in an hour and make it myself" (his usual MO). When I called to check on him at lunch he said that he hadn't been up, needed to eat, couldn't get up to feed himself, and hadn't taken any pain meds. I started calling family members to help and was able to reach our niece, Ann Lenting, who was close by and went over to feed Jon. When I came home form work he shared a light dinner with me of cheese, crackers and fruit then went to be early. His pain was reasonably under control at that point.

In the middle of the night he awoke in pain and said, "Doc, I just can't take this anymore. I hurt all of the time, I can't think and I can't get out of bed." I asked him what I could do for him and he said "End it". I cried all night and we lamented the fact that we both thought we could beat anything together but as Jon says, "It is what it is." I had to chuckle when right before we fell back asleep he said, "Maybe I'll feel better in the morning." Every day since he has been diagnosed he kept thinking that one day he would wake up and feel better, like when you've had a bad flu for a week.

This morning we had an appointment for blood draw, Dr. Linn and chemotherapy. It was apparent that he was really weak and fortunately Kristi accompanied us to the visit. The blood draw was first and then we saw the doctor. Jon's blood chemistry's were so bad that the doctor refused the chemo. I told him that Jon has had difficulty controlling his pain and I did not think the oral meds were adequate. At that point the doctor asked if we had considered in home Hospice. I asked him to explain exactly what that meant and basically we would have a nurse come to our home twice a week to manage IV meds for Jon (dialauded, his favorite) and address any medical, home or social needs that we have. We have an appointment with the hospice nurse tomorrow morning.

Jon received IV hydration and the meds that bind his elevated calcium so hopefully tomorrow he will be a little more cognizant. We came home and he immediately went to bed. Tonya and Tony came over to make dinner and Levi, Ericka, and Wyatt came by for dinner and a visit. Just to add to the drama of the day Elizabeth ended up with violent food poisoning and her teacup Yorkie was sick after surgery on Monday. Kelsey went up to Bellevue to take care of his sister and get her dog back to the hospital. He should be home any minute.

Right now we are all just physically and emotionally exhausted. My Mom and Dad are on there way out as soon as they can get a flight as is Staci. Hospice will provide us some support but we are now organizing friends and family members to sit with Jon 24/7. I can do most of it, but still need to work MWF so we are working out a schedule for those days.

Thanks for everyone who telephoned today, I'm sorry but I just wasn't up for much conversation. I am on my way to bed for the night.

Thanks to everyone for your continued prayer and support.

Wednesday, April 8, 2009

An email I received today from Gus and Koreen Lamoureaux

COURAGE

Lorri,

Koreen and I just wanted to drop you a note and let you know that we have read Jon's blog from just about day one. We feel kind of helpless being so far away and both wish we were in the area to help out. I have called a couple of times but worry that maybe I depress Jon because eventually the conversation turns to his health. From reading the blog I can tell his health is slipping and just wanted you to give Jon a hug for us and wanted to let you know how courageous we think you are for standing by a man you knew for a very short time prior to his getting seriously ill. You will always be a hero to us.

As for jon a short life is probably inevitable so tell him when he gets to the other side to have a big one all tracked down for me. I'll be looking to shoot something.
I hope you keep up the hard work and that God gives you the stamina to see this through no matter the out come. I keep praying for that miracle, hopefully, it is just slow to come. Take care.

Love,

Gus and Koreen Lamoureux

Sunday, March 29, 2009

At Lorri's request: From a different perspective

It’s Lori B writing the blog today as Lorri asked me to share with readers my perspective after spending a day with Lorri, and evening with Lorri, Jon and Kelsey. It is probably a great deal different than reading Lorri’s notes, and I hope it is at least half as interesting for you. When she first sent me a text this morning to ask me to write it I very quickly had both excitement, and fear, all in the same moment. It is an honor, and with slight anxiety.

First, let me say Happy Birthday, Jon. I will speak for everyone (please give me your permission, everyone) in saying that we all hope you have a great day and that you receive a TON of energy so that you can plan your camping trips for the summer, and we that might get invited to join you!

Jon has been having to go to Seattle for his IV treatments daily and is now on a break from all treatments until April 9th. He is in a great deal of pain, regularly, and on pain management medicine which helps him manage the days, but is challenging in other ways.

All last week Lorri and I were insisting on a bike ride Saturday regardless of the weather. We met in the morning for a smoothie, headed to the Chehalis Western trail in Olympia, and donned our rain gear because at any drop in a degree it would be snowing. We realized the short coming in the plans for the day, but we had to be physically moving somehow, somewhere, as that was the first day Lorri felt close to being well in a couple weeks and I am training for a crazy bike ride in August. Both Lorri and Kelsey have been fighting the winter cold and fatigue going around, which has made it hard for the entire family to manage daily needs of cooking, cleaning, laundry and work. After a short (very short) 6 mile ride in wet, cold headwinds we decided to be proud of our ride from Sleater Kinney to Indian Summer golf course, and go to lunch! While chunks of dirt and mud fell off of our backsides from being flung at us on our bike ride, we made famous friends with our servers at lunch.

After lunch we tripped into the jewelry store, still dropping dirt and bark from our wet clothing, Lorri found a small amount of diamonds beautifully set in a pendant in the shape of a peace sign that called to her, and she answered. It now hangs from her neck. We then went to see if we could make Saturday the largest shopping spree in a day and went to look at new carbon fiber bikes for Lorri. She found a couple to choose from and is excited to be in the market. The men at Old Town Bicycle treated her well and talked about her options. Lorri is not nearly as impulsive as I am, so she will think about it, dream about it, and hopefully have her new carbon frame within a couple weeks.

While we were on a girls retailing day Jon was with brother-in-law Tony having his own shopping day at Cabella’s-the shopping satisfaction for men equivalent to a jewelry store. If Jon can’t be hunting, he can surely be preparing for it. When I arrived at their home for dinner Jon and Tony had catalogues across the table reminding me of the old Sears Christmas Gift circling we used to do as kids. Jon and Tony had decided on a tent, cots for sleeping, chairs that are comfortable (blow up barcalounger, anyone?) discussed the pros and cons of sleeping bags, but spent the majority of their time on the cooking grill/stove/oven! Yes, Jon Nichols wants an oven at the campground and is expecting to have that fresh-baked smell to help bring the animals to the campground for their last supper. Pack your stuff now as these two are building a tent-city that could house the homeless, and in style! Jon, maybe you can rent your tent city to the city of Seattle, and it can still be called Nicholsville, and collect your taxes back! What do you think?

Kelsey and his friend Mike joined us for dinner and I was shocked at how big Kelsey is getting. I know that you are supposed to only say that about kids, not teenagers, but he looked so grown up, and his chest has really filled out! I just saw him a month ago and he didn’t look like this! ZOIKS! Jon, you better be nice to him or he might just be able to kick your butt! Kelsey is living with a 4.0 GPA right now and has decided he wants to pursue the UW for his college of choice. Way to go, Kelsey! You deserve it.

As this week is Spring Break for Kelsey, Lorri and Kelsey are headed to Connecticut to see family. Levi, Dan, Tonya and I will hang out with Jon during the days that he and Levi are not traveling to Riggins, Idaho to deliver the blue Ford truck to Ray who owns the ranch where they hunt in the fall.

After dinner we shared some dark chocolate with wine, or ice cream, or both and laughed a lot to a Dana Carvey DVD that Lorri had picked up. Good humor makes for good medicine. Following dinner was the real dessert for Jon. This comes the time for skin brushing and some massage therapy in front of the fire. Still being licensed in massage therapy I offered to help share the skin brushing duties as my schedule allows while Lorri is gone. This was to be my lesson. Lorri showed me how he likes to be brushed, and worked on a trigger point, and Jon was like a kitten purring and moving so that she was in the right spot. Jon rolled onto his back and Lorri brushed his belly and abdomen. Jon’s ascities has gotten better so that he only looks 6 months pregnant rather than 9. While Jon generously let me massage his abdominal cavity, and belly, Lorri directed me to where his spleen was, and where the tumor lives. Jon talked about how when he was at his appointments there was a mom with her child at the clinic and the child was on the receiving end of the treatment. Jon said that the kids were “just doing all that they could do”, with tears in his eyes. We all shared a quiet moment, and had a hard time choking down the emotions of the image, and then Lorri and I making slight eye contact while we imagined what it was like from Jon’s perspective as well.

Jon is visibly thin, and his energy is very low and he is weak. He still has the sparkle in his eyes and his color was better than I expected. He a good dinner and seemed to be in pretty good spirits.

As I have tried to write the things that are in my mind about what Jon, Lorri, and Kelsey are experiencing as I have seen it, it is harder for me to know about other family members that are not living right there in the house and have their own experiences, yet in a different way. And finally, there are those of us who try to help from a distance and have our own familiarity with cancer and how it affects a family. Whether it is an occasional call, email, text message or blog comment, every effort is important. We all have fears, and comfort for each other and the Nichols family, regardless of how often we might be able to be in touch with Jon and Lorri, Kelsey, Levi, Stacey and Elizabeth. Keep them all close in your hearts and prayers, and love them however, and whenever, you can.

Thursday, March 26, 2009

Today was our visit with Dr. Lin and number 12 of 14 IV antibiotics. Jon's liver function labs are improving but his AFP (tumor marker) is rising. Therefore, Dr. Lin wants to move forward with resuming IV chemo. Jon will start with Gemzar on April 9th in combination with Xyloda. He will have a second Gemzar chemo on April 16, continue Xyloda for 14 days then have a month off and do it all over again. The Gemzar will be low dose to spare any more damage to Jon's liver. He remains tired with a fair amount of pain. We are hoping for a better week next week as he will be done with his antibiotics and off xyloda. Dr. Lin increased the dosage of his long-acting oxycotin so I'm hoping his pain will be controlled without too much short-acting to fill in the rough spots.

We also saw Dr. Reilly today for a naturopathic visit. He only has Jon on a few supplements since he still can't eat very much. His ascites seems slightly better in the last day or so and he will continue on the diuretics.

After all the doctor visits Jon wanted to go to Cabelos to look at wall tents. Since we can't backpack right now he's planning on more car camping this spring and summer and wants to do it in style. It's good for him to have things to look forward to and be excited about.

Tuesday, March 24, 2009

Another day of antibiotics and challenges controlling Jon's pain. He said to me on the way to Seattle that he finally understands what the doctors are trying to accomplish with the long vs short acting oxycotin/oxycodone (alleluia!). I think it has been difficult for him to accept that he is now in constant pain and that he needs to keep his pain base-line under control. We see Dr. Linn on Thursday and will discuss with him increasing the dosage of Jon's long acting meds so he can stop taking so many short acting. He still is very "fuzzy" and forgetful and sometimes worse.

We have had some enjoyable moments in the last few days. Dan and Sandie came over Monday night and brought us dinner while Levi brought Wyatt to my office for "the trade" and an adjustment. It was wonderful having a home-cooked dinner made, served and cleaned up. Sandie and I enjoyed Wyatt while Dan and Jon worked on some leases. Wyatt spent the night and we took Jon to SCCA in the morning. While Jon had his IV, Wyatt and I paid Aunt Elizabeth a visit (I promised Ericka I would not take Wyatt into the cancer center with all of the drug resistant infections around) After that I took Jon to my office for a massage while I did Costco, Sprint, and picked up lunch. Ericka's sister Ashley staged a surprise return visit from China which she had plotted with Levi. I laughed when Ericka called and asked me to bring Wyatt over rather than her usual pick up because she needed her after-work shower and "couldn't wait one more minute" for Ashley to meet her nephew. I had a nice visit with the girls and returned home for dinner at El Charo with Jon and Kelsey. The days with Wyatt have been wonderful and Jon is even starting to get the hang of babies (while just a little bit!?)and definitely enjoys his time with his grandson.

Kelsey has been all stressed out because he discovered that his pigs have slipped in their weight over the last month and are behind schedule for their showing at the Puyallup fair mid-April. He has doubled up their feedings and added whole milk to their food. We found a tape measure where you can measure their girth and then extrapolate the weight. We tried it for the first time this weekend and what a fiasco! I wish I would have had a video camera while Kelsey and I chased those pigs around the pen trying to wrap that tape measure around their chests. They were snorting, running and neither of us could get a hold of them. We finally sneaked up and got a successful measurement. The Puyallup Spring Fair ought to be a riot and a learning experience!

Ann Lenting has Jon duty tomorrow and we promised her Starbucks for her 7:15am start time. Jon will be done Saturday with the IV antibiotics with Steve driving Friday and Kyle Saturday. Thanks to everyone who has helped with food and transportation for these two weeks.

Sunday, March 22, 2009

The weekend has been up and down. Saturday was pretty good. Levi took Jon to antibiotic treatment while Kelsey and I worked around the house and yard. Then Saturday night he got to hang with Levi, Maelie and Wyatt while Kelsey and I met Elizabeth for dinner. Today wasn't so great. He felt sick from the time he awoke and we attempted church but he felt to sick to go in and slept in the car. We went to IV antibiotics where he slept the entire time. He took lots of oxycodone and had difficult controlling his pain. Tonya and Tony had everyone over for dinner to celebrate the March birthdays (Jon, Jake and Ann's). He wanted to go even though he was miserable and then spent the first hour lying on the floor in the living room. He did eventually get up and eat but had an episode of dry heaves after dinner. Of course he did manage to have two servings of angle food cake and strawberries which stayed down and made him happy. He went right to bed when we got home. Hopefully tomorrow will be a better day.

Friday, March 20, 2009

Jon had a pretty decent day today. Kristi escorted him to antibiotic therapy (I seriously can't believe that there is no place in the southend and we have to drive to Seattle everyday for a 1/2 hour of antibiotics!). He also was out looking at more commercial properties and didn't get in bed for a nap til late in the day. I got home from work an hour ago and he is still sleeping, probably down for the night.

For all of you have been calling and emailing me about taking better care of myself I want to tell you that I am home late from work, not because I was seeing patients late, but having a 1 hour massage...it was wonderful! Thanks to everyone for your kind words and concern.

Thursday, March 19, 2009

Jon continues with his IV antibiotics. The doctors have finally convinced him that he should not be driving and I have family lined up for every day but this Saturday (Levi can take him to Seattle but Jon has this idea that he wants to go to Ellensburg to pick up some tires after his treatment which wouldn't work for Levi and his family. Any takers??)

I've been concerned about Jon's mental status as he has recently become somewhat confused and exhibited more irrational judgement and behavior. I called Dr. Lin yesterday and described the symptoms so we agreed on running another calcium level and talking more to Jon about his pain management and the driving issue. I was able to accompany him today to his IV treatment and was impressed with the way the doctors were able to communicate with him. They did find that his calcium levels were beginning to rise which led to the confusion he exhibited while I was returning from Florida. This time they caught it early and gave him the medication to bind the calcium and lower the blood levels. He seemed like his normal cancer-self today. It's weird how fast he can go from rational to irrational.

We have also been discussing pain management. The doctors would like Jon to take 2 long-acting oxycodone on a 12 hour schedule and use the short-acting in between. Jon is convinced that if he would do this he would end up taking too much oxycodone and still wants to take the minimum amount of medication. Unfortunately, what ends up happening is that he takes too little long-acting and too much short-acting which doesn't seem to control his pain very well and leads to episodes of over-medicating with the short-acting. The nurses, Ericka and I have been trying to explain to him that if he did take the meds on schedule he would end up taking much less medication but he has been resistant to the theory. Today the doctor explained the exact same thing and he seemed to take it to heart. I don't know if it was hearing it 27 times or just hearing it from a man.

Jon will stay on the week on/week off xyloda and we will continue to see Dr. Lin every two weeks through May at which time Jon will be rescanned to measure his progress and determine future treatment.

I'm really tired...

Tuesday, March 17, 2009

Jon came home Monday afternoon with his friend "Dorsal". Everyone that knows Jon understands his fetish for nicknames and that they all continue to evolve. I honestly don't even know Dorsal's real name; he does hard money loans with Jon for which he was originally dubbed the "Loan Shark" which became "Shark" then "Dorsal Fin" then finally just plain "Dorsal". Too funny. Jon continues to call me Doc as he has for the last 25 years. It cracks me up when we are in the hospital with his many doctors and he starts saying things like "Doc, get me a sprite." Doc, where's my phone?" They all get this confused look on their faces and start to get up like they are actually going to wait on him, then it hits them that he's talking to me. It's all rather humorous and Jon likes to say that at the end of the day everything still has to be funny.

He needs to continue on IV antibiotics for the next 12 days which means driving to Seattle daily. He drove himself today but felt so lousy when he got there that they needed to wait several hours to start the infusion. He also takes a fair amount of oxycodone and should not drive when he needs the meds for pain. I am rounding up people to drive him on the days I need to see patients.

I am relieved that they finally took out his port. I am convinced that thing was contaminated when they put it in at Auburn Medical Center and it has been nothing but trouble. I am hoping that he feels somewhat better after they get this infection under control. Today starts a week on of xyloda and celebrex.

I had what I would call one of my "Blue Days" today. I always try to keep a positive and optimistic attitude but some days I just need to feel sad about this whole thing. I believe that it is healthy to actually feel your emotions and not pretend they aren't real or don't exist. I have WAY too many days where I am required to put on my happy face for work, Jon, or the doctors and sometimes its therapeutic to just let the sadness steep for a while.

Sunday, March 15, 2009

Jon has been waiting all day for the surgeons to take out his port. They promise it will be today or rather tonight at this point...

He had an excellent visit with Riley. I had to laugh because Jon was making a big deal about Riley spending the night at the hospital, like he might be uncomfortable or something. I had to remind him that Riley is a hunting guide and is used to sleeping on the ground and in airports, the chairbeds they give us at UWMC are actually pretty comfortable. Of course with Jon and his buddies nothing is ever simple, Riley also was borrowing a rifle from Jon so we had to come home, take it out of the gun safe and then figure out what to do about carrying a rifle into the hospital. I called hospital security and they instructed us to take it to the police station down the street to store it during the visit. It all worked out really and well and Jon was both pleased and surprised.

I had a spinal screening all day today and am just too darn exhausted to make that drive back to Seattle tonight. I built a fire and am watching a chick flick I'm hoping to pick Jon up and bring him home tomorrow after work.

Saturday, March 14, 2009

We just met with "The Team". They have decided to remove the port as this is the third time it has become infected. Since Jon is not receiving any IV chemotherpay at this time and his veins are more accesible he should be fine without it. It seems that he has had nothing but trouble since they put it in at Auburn General. We are hoping that a surgeon can be called in over the weekend to do the procedure and his stay here will be short.
Jon slept well and is in good spirits. He honestly doesn't even seem sick from the infection. I spent the night and will be leaving at noon to pick up our friend Riley at the airport. He is a hunting guide buddy of Jon's who is passing through on his way back to Alaska. Riley is borrowing a rifle from Jon so I will take him back to the house and attempt to open the gun safe (no small task!) and then deliver him to Jon at the hospital. He will spend the night with Jon so I can make an appearance at the 50th birthday party of another of ours friends tonight. It is always good for Jon's spirits to spend time with his hunting buddies and tell adventure tales. Tomorrow I have a spinal screening from 10-3 so will return in the evening to the hosipital. With any luck they will let him go home and we can continue the infusions there.

Friday, March 13, 2009

Every Day Is a New Adventure

When Jon and I saw Dr. Lin yesterday the lab was short staffed and there was a delay sending all of Jon's results to Dr. Lin. He told us he would call if anything abnormal turned up. Jon woke up early today and we loaded his tires into his truck so he could have his studded snow tires removed. While having breakfast with his friend, Eric, Dr. Linn called and instructed him to admit himself back into UWMC immediately. They had detected and infection in his port which required immediate IV antibiotics. Eric had him there within the hour and he has already received his first dose.

I just finished work and am on my way up to see him. His only request was grape juice as he has become addicted to Purple Cows (grape juice and vanilla ice cream). He sounds good but he told me tonight that Dr. Lin had advised him that this particular infection can be fatal in 35% of the cases. Thankfully, Dr. Lin was on top of the situation and Jon is receiving the treatment he needs. He should be in the hospital for the next 3 days.

Thursday, March 12, 2009

Our visit with Dr. Lin went well today. Jon's bloodwork all came back within the normal range and both Dr. Lin and Jon feel that the Xyloda is helpful. It is designed to stabilize Jon's condition and stimulate his appetite so that he can regain his strength. The current plan is to continue the Xyloda and Celebrex every other week for two months then do another scan. We will also see Dr. Reilly (Naturopath) in two weeks two discuss a possible liver flush. Jon continues with weekly massage and acupuncture which improve both his pain level and mental attitude.
His energy and pain levels fluctuate so we have learned to just "go with the flow" on any given day. We will see Dr. Lin every two weeks for the next two months to monitor his progress.

Today was also Kelsey's parent/teacher conference. I continue to be amazed at his improvement in academics, maturity and confidence. He currently has a 4.0 with two International Baccalaureate classes. His teachers said things like "His writing is absolutely beautiful" and "He saved us at FFA districts last night." His IB History teacher said "Kelsey is the single most enthusiastic student I have" and my favorite is when his English teacher asked "Who feels strong today?" and he was the first one to raise his hand and move some heavy items to another classroom. For those of you who have followed Kelsey's journey you can appreciate how much adversity he has overcome and what a huge accomplishment these things are for him. Jon has always been very critical of Kelsey since he's not into things like football or UFC and has never had much appreciation for academics or non-sports activities. Although Jon didn't attend the conference he actually did offer Kelsey praise and congratulations for a job well done. I suppose that's a start.

After dinner Jon actually felt good enough to go to the grocery store for a few things and pick up his own prescriptions. He has become a crazy, ice-cream addict and we shovel as much food in his mouth as he can hold.

All in all it was a pretty good day around here.

Tuesday, March 10, 2009

Last night and today were our Wyatt days. He is growing so fast and changing everyday. Today he was all smiles from the moment he awoke and has really enjoyed playing with his toys (thank you Mari and Jerome!) and seeing all the sights. We had our first outing to Bellevue Square to meet Auntie Elizabeth and Kathy Landstrem for lunch. He was quite the hit with everyone and really seemed to enjoy looking at all the people, colors and lights. Elizabeth actually held him without making him cry! I felt pleased to have a successful first outing with my grandson.

Tonight Ericka joined us for dinner while I taught Kelsey to cook chicken piccata. I think I can get used to this...Kelsey cooking and me doing the dishes. I always enjoy my opportunities to catch up with Ericka and am thankful everyday for such a wonderful daughter-in-law.

Jon had an OK day. Not as good as yesterday but not in bed all day. He is funny with Wyatt, although he enjoys spending some time with him he just isn't sure what to do with a baby. He did feed him his bottle in bed while I showered this morning, but once he starts to fuss it's all "Doc, help!"

Monday, March 9, 2009

Jon had the best day since he started the Xyloda yesterday. He was actually up and around all day. He's eating much better but his stomach is still huge. He hasn't been taking his prescribed diuretic (don't ask me why?) but hopefully Dr. Lin can be helpful in that regard on Thursday.

I had a great day skiing yesterday with a couple of expert skiers at Crystal Mountain. Here's what I learned....
Ipod, orthotics, snug boots, food and water, good
Double black diamonds with snow up to my waist wearing a heavy water backpack, bad
Getting my butt kicked on the mountain, priceless!

Sunday, March 8, 2009

Wow, its too early in the morning for me to be blogging....I meant he worked at his desk the rest of the evening :)
It's been a quite week around here and Jon has slept through most of it. He did seem to perk up last night to watch UFC with me, Jake and Kyle and then even worked at his desk tomorrow. He's been eating a little better the last few days which always seems to help his energy level. He stops the Xyloda Tuesday for the next week. We are not sure how long he will be on this but meet with Dr. Lin on Thursday to review the treatment plan and check his blood levels.

Thursday, March 5, 2009

Jon started the Xyloda Tuesday night and has been wiped out ever since. He spent most of Wednesday in bed and although he slept late today he did make it to the couch and is watching the History Chanel. He doesn't appear to be nauseous but is extremely tired. He's taken quite a few oxycodone so he must also be having a fair amount of pain but hasn't mentioned it. He will be a week on, week off with the Xyloda and we are hoping the weeks off are a lot better. We see Dr. Lin next Thursday morning.

Kelsey cooked us an excellent dinner tonight of tacos and spanish rice. He had told me a few days ago that he was tired of doing the dishes every night and I told him if he cooked, I'd clean. He said "Your on, but you need to teach me." So far so good, two dinners in a row :)

Tuesday, March 3, 2009

Jon returned home from Arizona today and is in good spirits. He really enjoyed his visit with everyone there and finally felt warm. The first thing he said when he arrived is "My feet aren't even cold anymore!" He's eating much better and hopefully putting on some weight, it's difficult to tell with the ascites.

He took his first Xyloda and Celebrex tonight (oral chemo). Let's keep our fingers crossed that he tolerates it better this time. We see Dr. Lin for a followup next Thursday.

Monday, March 2, 2009

"The highest courage is to dare to be yourself in the face of adversity. Choosing right over wrong, ethic over convenience, and truth over popularity ... these are choices that measure your life. Travel the path of integrity without looking back, for there is never a wrong time to do the right thing." --Michael Moore

Friday, February 27, 2009

Jon's having an excellent time in Arizon and eating Howard and Kay out of house and home. His weight was down to 160 so he needs every calorie he can get.
I am using my time to get caught up at work and spending time with all of my girlfriends that I have been neglecting since Jon was diagnosed.

Thursday, February 26, 2009

Jon continues to feel better than he has in months. I really think the appetite stimulant has been helpful, (megesterol not pot!) he is eating well and regaining his strength.

We drove to Seattle in the snow early this morning for a blood draw and follow up appointment with Dr. Lin. His blood work was all good and his calcium levels were normal. Dr. Lin was able to graph the calcium levels since late January and determined that they were already on the rise throughout February. He concluded that the hypercalcemia was from the hormones produced by the tumors as Jon had been out of treatment since December and the protocol he had received was ineffective. As a result Dr. Lin would like to retry the Xyloda and Celebrex telling us that there has never been a case of hypercalcemia reported with those medications but to proceed cautiously. This makes me a bit uneasy but Jon is still in his "guns blazing" mode and wants to start asap.

During our drive this morning Jon was lamenting that he wanted to go outside but couldn't take the cold weather and thought he would take a trip to a warmer climate. We brainstormed on some destinations and finally concluded that a visit to Howard and Kay Brown in Arizona was his best and most enjoyable option. He left this evening on Alaska Airlines and has arrived moments ago. It will be good for him to have some time with his extended family and enjoy the sun and warmth. Staci may be coming over to visit with him as well. I expect him back by mid-week and Dr. Lin wants him to hold off on the Xyolda til he's back and do a follow up appointment after he's completed a week of the oral chemotherapy.

Wednesday, February 25, 2009

Jon awoke this morning and said this is the best he's felt in as long as he can remember!

Tuesday, February 24, 2009

I had an absolutely wonderful day with Wyatt. He is a sweet, happy baby and a joy to be around. He is laughing, smiling and becoming very active. We really don't have much of a routine yet so we just played the entire day by ear. Ericka came over around 4 to pick him up and we were having such a nice visit we decided to do our grocery shopping and have dinner together. Levi called after his Tuesday night class, around 9:30, wondering where his family was. I told him I had kidnapped them and wasn't giving them back...he didn't even laugh!

Jon did fairly well today. He ate a good breakfast, worked at his desk in the morning then had a massage at my office this afternoon. He called me afterward saying he had run into his friend, Brian, and they were going out to dinner. It's 10:30 and he just got home. That is more than he's done in weeks.

We have a blood draw and appointment with Dr. Lin Thursday at 7:30 am. From there we will strategize further treatment options.

Monday, February 23, 2009

Jon was released from the hospital today and I was able to take an extra long lunch to pick him up and get him home (thank goodness for Dr. Gagnon!) He is still extremely weak and tired but declined the wheelchair and managed to walk to the car. When I got him home I gave him a nice long bath with the extra special soaps Staci had made and a skin brushing. He both enjoyed and appreciated it, saying its nice to have a few moments of time when something actually feels good. It was sweet and sad all at the same time.

I'm just leaving work and am on my way to pick up Wyatt.
Jon was in good spirits when I returned to the hospital last night. He was relentlessly teasing the nurse so he's getting back to his usual self. He ate a big dinner of pot roast, mashed potatoes and veggies with some ice cream for dessert. That's the most I've seen him eat since before I went to Miami. We talked all evening and he seemed just about normal. The nurse removed his IV and they are starting him on oral meds instead of IV. He should come home tomorrow.

Tonight/tomorrow are my first official babysitting days with Wyatt. It will be a nice welcome home for Jon to have his grandson waiting!

Sunday, February 22, 2009

Jon just called me to ask me to bring a few things back to the hospital. He sounds pretty slurry again. He said, "Doc, are they sure I didn't have a stroke?" I said "Yes, I checked you for that when I got home from Miami and that's why I didn't make you got to the ER. The doctors here have also ruled that out." He replied "How could anyone possible be this stupid?" It's frustrating for him when he's used to being so sharp and it makes us all sad. Dan was just saying yesterday how much he misses their conversations since this has all started. I have to agree, its been nice last night and today to have a few of our usual talks when he is coherent.
Jon's calcium levels are now within the normal range. He still goes through episodes of confusion but they are definitely much less. He ate a fairly good breakfast but has some nausea afterword. The nurse gave him reglan for nausea and delauded for pain so he is now napping while I go home and shower, take care of some work and have dinner with Kelsey. I will be heading back for the evening.
Jon is awake, coherent, and hungry. I just ordered him breakfast and afterward the doctor wants us to go for a walk around the wing. He still a little loopy but can hold a conversation without saying too many inappropriate things (that's not much different than his usual self!) We are still awaiting the results of the paracentesis and this mornings calcium levels but they have started the antibiotics.
He will be here a few more days until they isolate the cause of the infection and get him on a narrower-scope antibiotic. Looks like he might get out Tuesday.

Saturday, February 21, 2009

Jon's blood calcium is now down to 11 (10 is normal) and he just had a 90% lucid conversation with the doctor. In addition to the calcium problem his bloodwork disclosed an infection that they suspect is coming from the fluid in his belly. They are about to perform a pericentesis to extract the fluid and send to the lab for testing. Next he will start on antibiotics. The doctor suspects that this has also contributed to his disorientation and confusion. He is resting comfortably.
I'm back at UWMC and Jon is still sleeping 90% of the time. He did answer his phone and has conversed a little since I've been here. His eyes even lit up a bit when I told him gold has hit $1000 an ounce this week as he has holdings in a gold company :)

His calcium levels are slowly coming down. It started at 15 and is now down to 12.5. He needs to be in the 8-10 range before the confusion subsides and they let him go home. He still isn't eating much and they gave him Megesterol to increase his appetite but it hasn't helped yet (they also suggested marijuana but somehow I just can't imagine Jon with a bong!). The parathyroid tests were run this morning as well as some blood and urine cultures as he briefly spiked a fever during the night. No results yet. I spoke to the doctor at length last night and he agreed that it was unlikely that the cancer has spread to his bones and it is probably the hormonal imbalance cause by the tumor and liver damage. So far no scans have been ordered and I am awaiting my meeting with the doctor this afternoon.

Friday, February 20, 2009

Jon and I are here at the UW, Dan just left for the night. Its been a long day for everyone. I had a chance to speak with one of the doctors and he explained a little more about the elevated calcium. There are two possibilities; 1. the tumors or the liver are producing hormones that effect his parathyroid gland which in turn controls the amount of calcium in his blood or 2. the cancer has spread to his bones and the calcium is being released into the blood stream from the bone damage. Based upon what I've seen so far I would go with option #1. In all the scans there has never been cancer in his bones and we already know his AFP is elevated from the tumors in the liver which would support the hormone theory. The doctors are still debating on what tests to order but it will probably be a bone scan and/or parathyroid tests. Jon is currently receiving IV saline to dilute the calcium and it has dropped one point since this morning. They will be able to treat the hormone issue with medication once they determine the cause. We will no more tomorrow and it is expected that Jon will be released on Sunday. He does seem slightly better tonight, at least talking a little bit and I got a wink when I arrived, but he still is confused and exhausted. The doctors believe that the confusion is secondary to the elevated calcium.

There has been some discussion among the immediate family about whether or not Jon wants to continue to fight cancer. Anyone who has witnessed all that he has endured could completely understand if he would want to give up after 2 1/2 years of this. Levi and I had talked a few days ago about trying to broach this subject with him when he was more coherent so that we could continue to exercise his wishes. When Jon saw Dr. Lin last week Levi said he told the doctor that if he was going down he wanted to go "guns blazing". He repeated those sentiments today several time to Dan and the doctors so we all feel confident that he is still in the fight. I have always deferred to Jon's wishes in this battle, if he wants to fight 500% then I'm right there with him, but if he ever gets to the point that he's tired and fed-up then I will support that decision as well. It was nice, however, to receive confirmation that the old Jon is still in there, continuing the fight.
Jon saw Dr Lin today and had his bloodwork done. His calcium levels are elevated and he remains exhausted and still somewhat confused. The doctors decided to admit him to UWMC for further testing rather than have us haul him around to a bunch of different doctors for a variety of tests. Dan took him to the appointment today and he is taking him to the hospital for admission. He did an excellent job of asking my list of questions, reviewing the list of meds, taking notes from the doctor and calling me with all the information while I was at work which I appreciate immensely. I will be heading up tonight after work.

Thursday, February 19, 2009

Jon had a slightly better day today. He is still exhausted but much less confused and disoriented. He ate small frequent meals and I managed to get him in the tub, bathed, shaved and dressed in clean clothes. He will have bloodwork done tomorrow and then an office visit with Dr. Lin. He is off all chemo until then and resting comfortably
Jon had another rough day yesterday. When I was changing planes in Chicago I called him and he sounded delirious and confused. He and Staci were returning from the accountant and I really couldn't understand much of what he was saying. When I talked to Staci she said that he had been like that all morning and that when she first checked on him that day he was already up and had taken his meds himself (with no food of course). She tried to get him to eat but it sounds like he couldn't get very much down. We called Dr. Linn and he instructed Staci to bring Jon to the UW but Jon refused. The doctor felt that the confusion could be from his new medication that Jon might have taken incorrectly but they wanted to do a brain scan to make sure there were no other causes for concern. Kelsey and I got home at 6:30 and Dan was here with Jon while Staci on her way to the airport with Levi. They all tried to get Jon to go to the hospital but he wasn't having any of it. I talked to the nurse and she said if he was comfortable and becoming less confused I could wait until today. When I finally saw him and was able to assess the situation he was only mildly confused, he knew his name, birthday, today's date and even that Obama was president. Neurological testing (pupils, reflexes, cranial nerves) was also negative so I felt it was safe to let him sleep it off. Dr. Lin also did not want Jon to take anymore Xoloda until the confusion passed but Jon was insistent on taking it. Fortunately Staci had moved the Xyloda into another bathroom and Dan hid the rest of his meds. Jon agreed to not take anything else without someone assisting him but he was really pissed off that I wouldn't give him any more Xyloda.

In the middle of the night he awoke in excruciating pain. It took two oxycodone to calm him down and enable him to sleep. He is currently still asleep and I am waiting until the doctor gets in at 8am to formulate a plan. Jon is sick of hospitals, poking and prodding. I certainly don't blame him for that, the poor guy has been through hell. He also doesn't feel that there is anything the hospital can do for him but I'm not sure I agree at this point. We'll see what Dr. Lin has to say.

I feel badly that Jon has such a rough time the past two days while I was gone but I also feel that if I can't do the things to maintain mine (and Kelsey's) sanity I won't be much good to take care of Jon. The older I've become the more I have come to appreciate how amazing my family is. They are kind, generous, loving and hysterically funny. It was the best medicine for Kelsey and I to be surrounded by them and I feel that my strength has been renewed to continue this battle. I also appreciate everyone in Jon's family pitching in and taking care of him in my absence, especially Staci, Levi, Ericka, Dan, Tony and Tonya on this particular episode. Special thanks also to Dave Leonard for lifting Jon's spirits on his visit.