We had to forgo our duck hunting plans in lieu of Jon getting his port. He had an appointment yesterday but SCTWC hadn't sent the appropriate paperwork so he had to do it today. Jon's doing ok, mostly tired and unhappy about all of the antibiotics they gave him for the port surgery. He's decided to skip chemo tomorrow and give himself a week to get his strength back. On a positive note we have both noticed some shrinkage in the size of his abdomen so hopefully the chemo is having an effect.

I spoke to Dr. Chen and Dr. Gosswami today. Dr Gosswami felt that radiofrequency ablation in the pancreas is too risky so that is officially off of the table. Dr. Chen gave me all of the info on Photodynamic Therapy and it sounds promising. Unfortunately, Jon is not a candidate at this time because they are only testing liver and colon cancer right now, however, it is possible that he will be a candidate by spring for the newer studies. I am still waiting to hear about the genetic testing and Revlimid. I did talk to another one of Dr. Chues patients who is using the Revlimide with Zoloda an doing well. That is also anther option should this current chemotherapy prove intolerable.

Dr Chue, Dr Chue, Dr Chue!

I have been on a cancer rampage since my last blog. On Friday I put calls into SCTWC, Dr. Goswami and UW Medical Center to address all of the concerns I posted on my last blog. I was only able to leave messages but am expecting return phone calls tomorrow. Ironically, while I was on the phone I received another telephone call from a number I didn't recognize. When I checked my messages, low and behold, it was none other then Dr. Chue. He left me his home telephone number and when I called him back on Saturday we had a two hour conversation about Jon and his current situation. It felt like having an audience with the Pope! The man is truly a genius and there will never be a way for Jon or I to repay him for what he has done for us. By the end of our conversation I had a list of chores and am equipped with all the questions, phone numbers and research articles I need to move forward with Jon's treatment. As it stands, Jon will continue on the current chemotherapy until he can no longer tolerate the side effects. In the meantime I will follow up on the genetic testing that was ordered when Dr. Chue was still practicing. I don't believe it was done and it is an important test to determine the effectiveness of other types of chemotherapy that may be beneficial. Dr. Chue also gave me the telephone number for a Dr. Chen who is the pioneer of Photodynamic Therapy in the Seattle area. Dr. Chue was certain it was effective for lung and liver metastasis and thought it could possibly be used on the pancreas. We also have the option of radiofrequency ablation on the pancreas and am awaiting for Dr. Goswami to give his opinion on that. Dr. Chue is not in favor of the Y90 because it has not been shown to be successful on pancreatic patients and can make Jon sicker than he already is. We will probably save that as a last ditch effort. Dr. Chue also reminded me that he had a few other "secret formulas" up his sleeve.

Jon is still very tired and his abdomen is distended by the size of the tumors. However, having Dr. Chue back in the pictures gives us hope that there are still other options available should this current regiment prove ineffective. I am grateful for having a direct line to the Chuemaster and will use it as needed. Tomorrow Jon gets his port, Tuesday we go to "Jon's Private Duck Club" together for my first duck hunting experience and Wednesday Kristi takes him to Chemo #4. New Years Eve might prove interesting. I told him he should let them give him his normal dose of steroids so he can stay up all night and ring in the New Year with me :)

This last month has been very difficult for all of us. I don't think either of us have felt this low since the original diagnosis. Cancer has a way of wearing you down after a while. But, today was a good day. Another one of Jon's friends, Dave Bartran, came over to duck hunt with Jon and I got to ski all day with my friend, Mari. It was perfect snow, a beautiful day and we had a great time. It was nice to feel happy for a few hours.

I was surprised to see how long it's been since I posted anything. I guess I've been busy with all of the Christmas preparation and celebrating the holiday.

We had a nice Christmas, on the quiet side since Jon's been fairly tired with this recent chemo. Levi, Ericka, Wyatt, Maelie, Elizabeth, Jon and I all spent Christmas Eve together. It was awesome to have grandchildren at Christmas (and the rest of the time as well)! Maelie is old enough to really understand and appreciate the holiday and kept us all entertained. Wyatt is an adorable, chubby baby and I am looking forward to my Tuesdays of babysitting that start in February. We all made fun of Elizabeth because Wyatt would cry the minute she would hold them and would stop the second Kelsey or I would take him from her! We all decided Ericka is truly a gift from God and we are all thrilled to have her a part of the family. Levi has matured into a wonderful husband and father, I still have a difficult time believing the stories of his youth and am thankful I missed out on all of that and get to enjoy them all now :)

The kids and I were up late doing church and our "Santa jobs" so we all slept in on Christmas day. Jon skipped out on candlelight services and went to bed early so he could preserve his energy for Christmas Day and duck hunting the rest of the week. Christmas morning was Jon, me, Elizabeth, and Kelsey who opened gifts and stocking stuffers while we drank coffee and ate cinnamon rolls. We went to Granny Nichols for Christmas dinner to celebrate with most of the Nichols clan. Tonya did a great job organizing the day and asked all of us to bring a Nichols memory to share. It was fun to reminisce, even for those of us who are new to the family.

Chemo last week was somewhat difficult for Jon. Krist and Tonya escorted him this time and he was feeling sick before they even left the new SCTWC. Jon had also been experiencing chest pains but Dr. Chen determined it was from the position he was in during chemo which cause the tumors to press up on his chest. He was chilled, nausea and tired when he got home but after an hour in bed with hot water bottles and an oxycodone he was up eating dinner and looking for his hunting magazines. He's been mostly just tired the rest of the week and he needs to take injections to boost his white count. He is finally giving in and getting a port so they can stop putting chemo in his veins (or what is left of them.) I am relieved that he finally made the decision and have been concerned that in the event of an emergency they would be unable to access a vein. He goes to Auburn general on Monday to have the port installed and is back at chemo on Wednesday.

Last time he had this regimen of chemo he had absolutely no side effects until 6 weeks into the program. This time its been problematic since chemo #1. We both feel certain he won't be able to tolerate all 12 and have decided to contact Dr. Goswami this week to see if there is anything he can do for the tumor on his pancreas. It is large enough to palpate through his abdomen and we are hoping that it can be treated with radiofrequency ablation and then he can have the Y90 embolization on his liver. The tumor on his pancreas also has the highest SUV on the PET scan which is a measure of the strength of the physiological activity of the cancer. It is our biggest concern because of the possibility of spreading so we want to eliminate it in the best way possible.

I've come to the conclusion that Jon is attempting to hunt himself to death rather than deal with cancer. Honestly, he duck hunts from 6 in the morning til 6 at night every chance he gets. He is happier than I have seen him in a very long time. The cold weather has driven all the water fowl to the duck blind and he says that his time there is more beautiful then the Planet Earth videos can every depict. His long-time friend Rex has joined him the past few days and the two of them are quite a pair. Rex has survived three plane crashes and comes equipped with titanium vertebra. In the last two days they have both broken through the ice and got soaked up to their chests (Rex) or their wallets (Jon). Jon says they have become like the two old guys in Second Hand Lions (great movie if you haven't seen it.) We all had dinner together last night and Rex and I shared a few tears while Jon slept in my car.

So tonight we are all home by the fire. Jon is grateful and satisfied with his recent adventures. Kelsey has a gaggle of friends over that have been snowboarding and sledding down our hill. We have just finished dinner and I am happy to know my family is all safe and warm on this blustery, snowy night.

Jon was up and out of bed making waffles this morning. Did I mention they are no longer green and actually taste good most of the time? He came into the office for a massage and felt too sick to get up when the therapist was done. I checked his temp and it was up to 100 (down from 102 last night). I gave him two ibuprofen and left him sleep. We had an appointment together at lunch so I went on without him and within 30 minutes he was calling me for directions to get there. He's been out and about the rest of the day and is going duck hunting with our friend, Jerome, tomorrow. They're calling for 3-5 inches of snow and yes, he will go anyhow. Jerome and his wife, Mari, promise me that they can make this duck taste good!

This week has been an emotional roller coaster for all of us. Jon felt pretty good most of last week and we enjoyed our visit with Staci. Our friend, Martin, also came into town for a few hours, just long enough to hunt a little duck with Jon. I am grateful Jon has discovered the famous "Duck Club", it gives him something enjoyable to do that is easy and relaxing. Every guest he has taken along just raves about it (even Kelsey who really isn't much of a hunter.) I haven't made the trek to Roy with him yet but was planning to do so in the next few weeks.

Friday night we went to Levi and Ericka's for dinner. Staci had been cooking up a storm during her visit and she treated us to some shrimp ceviche and all of the weeks leftovers. We also had the opportunity that night to discuss our estate planning and any potential memorial services. Although the conversation was long overdue I found it extremely difficult and couldn't hold back my tears. I am as bad as Jon when it comes to showing any kind of weakness so I try to avoid it all costs, especially when the one thing he asked of me is to be strong and to try to keep our lives as normal as possible (I guess that's two things). There is something about having that discussion when someone is seriously ill that makes you feel like we are all giving up. I know that isn't the case, but it is still how it feels. We ironed out a lot of details and had some clarity on Jon's wishes for the future. He felt pretty crummy that night, the next day, and was unable to attend my office Christmas party. He did perk up on Sunday and was back at the duck blind (hmmm...funny how that works!). I have been on a crying jag ever since. It initially disturbed me but I have decided to make peace with the process and just cry until I'm done.

Our dear friend, Lori Belienski, escorted Jon to chemo #3. They have a unique relationship and enjoyed each others company. Lori did an excellent job of monitoring Jon, taking notes, and instructing me on my duties for the week. When they first drew Jon's blood his counts were so low they were not going to administer chemotherapy at all. They decided to recheck and although the WBC, RBCs, hemoglobin, hematocrit, and platelets were low they were in an acceptable range to proceed with chemo. The day seemed to go well and Jon was in good spirits. When I met him in the driveway he was sitting in his truck so I went into the house to finish up dinner. He sometimes will sit out there and talk on his phone if he's in the middle of a conversation so I didn't think much of it until 15 minutes went by and he didn't come in. When I went out to check on him he was shivering and sick. I filled our bed with hot water bottles and heating pads so he could come in and get under the covers. He vomitted a few times before he got out of his truck and went straight to bed in his jeans and down coat. I stayed with him until he stopped shivering and fell asleep. He's been sleeping soundly ever since. Kelsey was kind enough to clean up his truck.

His liver and abdominal cavity are becoming increasingly large. We cannot tell if it is the tumors swelling from the chemo as it does its job or the cancer growing. Jon is seriously considering moving forward with the Y90 isotopes in the liver if we don't see some significant change in the next week. That may be the best option to control the liver and then return to chemotherapy to get the rest. Every day brings a new challenge but as sick as he is tonight he can wake up tomorrow feeling good and go off to the Duck Club. It is quite a ride.

So the moral of the story is to please continue to pray for all of us; for strength, wisdom, guidance and most of all, perseverance.

Today was chemo number 2 of 12. Staci is visiting and accompanied Jon for the day. She is writing on a book on spirituality and they spent a good part of the day sharing her research. Jon was home by 6 and exhausted by the time he got here, took a nap, ate dinner, then went back to bed for the night. Our favorite nurse, Dee told him that it's not uncommon to have the second round of the same chemo hit you harder than the first.

Next week will be the last week at the old SCTWC building. They have a new facility in Renton that will open on December 19. It will be nice having them a little closer to our home but we are disappointed that all of the staff (especially Dee) won't be making the communte. Jon is using all of his powers of persuasion to change her mind.

Jon did fairly well with his first chemo but already experienced the Thursday afternoon "crash" from the premeds and felt pretty crummy on Friday and Saturday. It was disappointing because last time we did this regime he felt fine for the first month...we figured we had at least until after Christmas until the side effects started. The good news is he felt great by Sunday and was up and out the door to duck hunt at 6:00am

We did take the snowtrain to Leavenworth and it started out fun and festive. They have the train all decorated, feed you breakfast and entertain you with Christmas musicians, carolers and magicians. There was not a single bit of snow over the mountains or in Leavenworth but the town was packed full of Christmas spirit. We had lunch of brautworst and saurkraut and did some shopping. Jon got tired after an hour or so and camped out in front of the fireplace of a nice hotel while Kelsey and I saw the sights. At dusk all of the many trees in the cental park were lit while a choir sang Silent Night. We made it back to the train by 5:00 and expected a nice, relaxing trip home...no such luck! We were delayed by some freight trains crossing our tracks and it took us 9 HOURS to get home. If felt like one of those disaster movies...I kept waiting for the terrorist or giant apes to attack! We didn't actually make it back to our house until 1:30 am. I was amazed when Jon actually got up at 5:30 for duck hunting.

Kelsey and I got a giant Douglas Fir at a lot in Bonney Lake. It's up, decorated and I made a few batches of Christmas cookies. Kristi, Elizabeth and her friend Marcus came over for dinner and we entertained oursleves with lots of funny Nichols stories...I'm not sure Marcus will ever come back!

Staci is flying in tonight to have her first visit with her new nephew. He is adorable and growing by leaps and bounds every week.

Jon's first chemo was realtively uneventful. He went solo as it was scheduled at the last minute and I was not able to reschedule my work. He does fine early in the treatment and won't really "need" me to take him for a few weeks. Kristi has also volunteered for the position and I always appreciate any help.

He got his usual steroid high which even facilitated the Christmas lights (albeit a mix of single white and icicle lights in a row?!?!) He's duck hunting today and will probably go again tomorrow. If he has a reaction from this chemo it will be Friday when all of the pre-meds wear off.

On Saturday Jon, Kelsey and I are taking the snowtrain to Leavenworth (Bavarian village in the Cascades). We've been wanting to do it for years and are excited for the event. Kelsey and I will get our Christmas tree on Sunday while Jon goes.....where else but duck hunting?!?!

Jon received a telephone call from Dr. Chen today after he had the opportunity to finally consult with Dr. Chue. Dr. Chue and Chen agree that having the Y90 embolization concurrently with the chemotherapy would be too aggressive for Jon and could have a potentially fatal outcome. Instead, Dr. Chue is recommending that Jon complete the 12 metronomic chemotherapies with 5FU, taxol and oxyplatin. After which he may have the Y90 embolizations, one in each lobe of the liver. Jon seemed relieved after the phone call and I cancelled the arterial mapping for tomorrow. Instead, Jon will begin his chemotherapy at SCTWC. We are both feeling optimistic today with the return of the Chuemaster.