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.

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.

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.

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.

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.

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...

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.

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.

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.

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.

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.

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!"

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!

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.

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 :)

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.

"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