A Happy Holiday

The holiday festivities are starting to wind down and we are excited to ring in 2008.
We had an excellent Christmas. It started with the Nichols Family Christmas at Dan and Sandy's, Sunday the 23rd which was delicious and fun. I even managed to steal the Apples to Apples game (our family favorite) from Levi in the White Elephant Gift Exchange (although he licked the box several times in attempts to dissuade me!) Christmas Eve was me, Jon, Elizabeth, David, Kelsey, Levi, Ericka and Maelie. As with most 18month olds Maelie had little interest in her presents but we managed to get her to open all of them. She is a delight! We all went to the candlelight service on Christmas Eve and I have to admit my favorite part was sitting next to Kelsey as he belted out Silent Night. He has a beautiful voice and it made me cry.

I was grateful to sleep in until 8:00 am Christmas morning! Elizabeth, David, Jon, Kelsey and I opened our stockings and "Santa" gift while we ate cinnamon rolls and drank coffee. Jon was quite pleased with his new padded Carhart bibs and coat...so much so that he wore them inside all morning! We had a big breakfast of Eggs Benedict and then released David to spend the rest of the day with his family. Elizabeth and I made a trip to Safeway and it actually snowed! It think that is the first time I've seen snow in Seattle on Christmas Day. Levi spent the day with Erickas family (a story unto itself!) but returned for prime rib Christmas dinner. Kelsey and Levi finished off the day with video games, Elizabeth went back to Bellevue, and Jon and I watched Forrest Gump, one of our favorite movies. I was sad that I didn't get to see my side of the family but managed to talk to most of them on the telephone. My parents were visiting my sister, Barbara in Connecticut where her oldest daughter Alison just returned from six months in France. All she wanted for Christmas was to see her grandparents so I certainly can't argue with that!

Staci and Octavio arrived the next day where we did Christmas all over again. After dinner and gifts they taught Kelsey and I the finer point of poker. Octavio says I have potential but Kelsey is hopeless in the gambling world! Staci ended up the big winner of the night. True to form, Jon watched UFC videos while we played our games.

The next day was Kelsey's 16th birthday. We all spent the day in Seattle sight seeing in the freezing, pouring rain. (Yes, Kelsey we all love you that much!) Dinner was at Rock Bottom and Kelsey positively glowed with excitement. There is nothing he loves more than being surrounded by his siblings and I am eternally grateful for all of them.

Friday night was a fabulous dinner at Tony and Tonya's. Saturday was a day of jeeping and tubing in the snow complete with a big bonfire and roasted hot dogs. Jon left for goose hunting on Saturday while Levi and Kelsey went back for more jeeping on Sunday. Stac, Octavio and I went to church this morning and then I dropped them at the airport for their return to California. I booked a room at the Westin in downtown Seattle for New Year Eve for me, Kelsey, and Levi. Our plan is to go to Seattle Center and ring in 2008 with the big crowd. Jon came back early from hunting but he's not much of a crowd person so the jury is out on his participation. I suggested a good book and a movie at the hotel while the boys and I brave the crowds.

Wow, did I mention I actually managed to work a few days at the office between all that?

Jon enjoyed the holidays and all the time with our family. It seems he was more disappointed in his PET scan results than he initially let on. Although his attitude remains good he is really frustrated with living what he considers a "small" life. Before he was diagnosed he had read an article about "Living Large" and that's what he really wants to do...kind of difficult when you have to go to chemo every Tuesday. He wants to kill grizzly bears and backpack the world. Can't say I blame the guy but I try to encourage him to find pleasure in all of the simple things that surround us. I am grateful that he was able to go goose hunting this weekend which seemed to help alleviate some of his stress.

Since we are still a little puzzled about the PET scan results I telephoned a radiologist friend of mine and asked him to review all three scans with us. We have an appointment on Wednesday during my lunch hour to see him.

I am looking forward to 2008 as a year of continued hope and unlimited possibilities. Happy New Year everyone!

The Beat Goes On

We talked to some of our cancer buddies today and got the word that Doxol is tolerated very well with minimal side effects. Jon says he doesn't mind doing more chemo as long as he can keep working out and go goose hunting in January :) He also said yesterday that he is just happy to be alive and feeling good since everyone thought he'd be long dead by now. His attitude is truly amazing.

Tonight we are meeting Levi, Ericka and all of their friends at Red Robin for some Christmas Cheer. Tomorrow Levi, Ericka, Kelsey and all of Ericka's sisters are heading to the mountains to play in the snow. Jon and I will be working on Christmas prep...OK the truth is I will be working on Christmas prep and Jon will be working on his new rifle!

We are looking forward to having all the kids here for Christmas, albeit tag team with every one's work and extended family schedule. It should be a week long celebration since Staci and Octavio don't arrive until the 26th and Kelsey's sixteenth birthday is the 27th.

Merry Christmas to all of you blog readers and thank you for your continued prayers and support.

A Mixed Bag

We saw Dr. Chue this morning and are all a little confused about the results of the PET scan. The report today told us that one of the tumors in Jon's liver has shrunk while one has increased in size. The odd thing is that this scan lists several other tumors that were not listed in the last PET scan but were called "to numerous to count" in the first scan. What is even stranger is that the radiologist compared the size of these tumors to the previous scan where they were never mentioned at all. When I got home I pulled out all three scan results and read through them several times. The only conclusion I can come to is that there were so many of the small tumors originally that they appeared in too large of a number to quantify. Many of the small tumors were killed by the first two rounds of chemo and have left several smaller tumors that are evident in the most recent scan and now quantifiable in both number and size. The good news is that they scanned Jon's entire body and found no additional metastasis. There are two nodules in his right lung that do not "light up" in the PET scan which means they are more than likely a scar from the Gemzar (notoriously hard on the lungs) and not cancer. The pancreas still looks good and his SUV (intensity of the scan) has reduced from 8.9 to 2-3 which is considered a very good response.

I guess I would say that Jon and I are a little disappointed with the results. He looks and feels so good we were really expecting a better report. The two largest tumors in his liver are still too large for ablation so on we go with chemo. Dr. Chue feels that the remaining tumors may be the ones that are resistant to the chemo that we have been using so we are switching to Doxil for the next round. Jon will have that in combination with Taxol which he has had all along, it is the chemo that destroys the blood supply to the tumors to starve them out. He will have four weeks on with Doxil/Taxol, one week with just Taxol, then repeat the cycle for 14 weeks. He will have another PET scan in April. No more Tarceva since he doesn't tolerate it very well.

We continue to be optimistic with his prognosis. Dr. Chue is as excited as ever to make Jon his next poster child. I asked Jon tonight how he feels about all this and he responded, "I'm just basing my progress on how good I feel." I can't argue with that.

We have a break until January 15 which gives us time to enjoy the holidays with our friends and family. Jon plans on working out and getting stronger so that he can continue to "kick cancer's ass" in 2008!

Jon wants to make sure that I tell everyone the jeans were on sale :)

Jon bought three new pair of jeans today :)

NEXT WEEK'S SCHEDULE

LAST CHEMO TUESDAY, DECEMBER 18

PET SCAN WEDNESDAY, DECEMBER 19

CONSULT WITH DR. CHUE THURSDAY, DECEMBER 20, 9:30AM

Beating The Odds

I saw our primary care physician, Dr. Day, today for my yearly physical. She was the unfortunate doctor to find Jon's cancer. Naturally she asked how he was doing and I was pleased to report, "Very well, I even brought you a picture." She laughed and said "He has certainly beat the odds."

She kept the picture

Could this Be The Last???

Jon has just completed Chemo #37..hard to believe what a journey it's been. He is in acupuncture with Darren right now getting his weekly "needling" Last night he told me that he actually looks forward to his chemo sessions and I would have to agree. We get to spend the entire day together, the staff here is amazing, and everyone spoils him rotten. In all seriousness, Jon does miss interacting with the world on a regular basis and is sometimes jealous that I have a job to go to each day. I will take that as a sign he is getting better...when he feels crappy he just wants to sleep, then sometimes he feels good enough to know he's bored out of his mind, other times he feels good enough to be active and productive which is the only state the man has ever known. This experience has softened the old guy (sorry boys, but it's true) and has made him much more empathetic to others who have struggled and walked a different path. Jon and I have been extremely fortunate in our lives and the cancer experience has humbled us both.

Dr Chan (the primary care physician) paid his weekly visit and volunteered to schedule Jon's PET scan before I even had a chance to ask. I think everyone here is as excited as we are to see the results. Jon will have one more chemo next week and the PET scan shortly thereafter. Best case scenario is no more cancer (which Dr. Chan fully expects-the guy IS learning) and worst case scenario is surgery or more chemo. We will have an appointment to discuss this all with Dr. Chue sometime around Christmas. Darren (acupuncturist) came in for a visit during which he and Jon discussed Jon working as a Cancer Advocate at SCTWC. Knowing Jon, Darren quickly pointed out that it was a paid position :) I think it would be a wonderful opportunity for him to share his knowledge and strength with others on their cancer journey. Darren also informed Jon that he will continue to see him for his "after care" I just love how everyone here just assumes he will have a cure.

At this point we are entertaining the possibility of next week being our last chemotherapy appointment. I'm quite sure we could find something else enjoyable to do on my day off!

OH, GRANNY WHALEN!

Remember last year when Jon refused to buy new jeans in case he might die and not get his money's worth? Well he started that nonsense again this fall. He had a pair of jeans that were fairly worn and had a couple of holes in them. He asked me to patch them for him but I refused and told him he needed a new pair since he was going to live til 100. When we were in California for Staci and Octavio's wedding he asked his mother-in-law, Faye Whalen, if she would do the honors. Although I protested, she agreed and suggested that Levi bring them to her in Arizona during his upcoming visit. I then tried to convince Levi that he should just throw them in the trash, but being the compliant son he followed his father's orders.

To my delight, when Levi and Ericka returned they presented me with the most attractive pair of jeans I think I had ever seen. Granny Whalen said, "Oh, I'll fix Jon's jeans all right," then proceeded to sew on glitter, heart shaped pink patches. We all laughed our heads off and came up with a plan to put them in his closet with all of his other jeans so he would just pull them out on a dark morning and put them on. Jon has some days where he is pretty foggy in the head after chemo so we were pretty sure we'd get away with it. Sadly, last week Jon walked out of the closet shouting, "Faye ruined my jeans!" Although I was disappointed he didn't actually put them on, the look on his face was priceless!

Excellent job, G-dub!

A Good Bet To Lose.

Chemo Day! As you may have read on my prior blogs, Jon's white counts have been low and he has been using supplements not medications to raise them. We had been debating the pros and cons of using the Lukeine all weekend and Jon finally said he would bet me that his white count would be normal and he would be able to have chemo today. Well guess who won the bet?? His differentiated white counts were all normal as were his platelets. Only the hemoglobin and hematocrit were slightly low. He is also feeling much better since yesterday and we've come to the conclusion that it was his cold more than anything that drug him down over the weekend. I guess after everything we've been through we've become a bit paranoid any time he starts to feel bad. We have this fear that if he starts to get sick he won't get out of bed for weeks. Jon also said that as the PET scan closer he starts to get a bit nervous about the results. I would say I am more excited then nervous...we haven't had a bad scan yet (other than the first one!) I fully expect to see improvement, the only question will be how much and if he will need surgery.

We have a new doctor at SCTWC. He is a Primary Care Physician who sees Jon each visit (don't worry Dr. Chue is still in charge, we just see him and Dr. Reilly once a month). That position was formerly delegated to a Physicians Assistant until two weeks ago. Our new guy, Dr. Chan came in for his weekly visit. He is a fairly young, sincere and genuine guy. Of course you know Jon, he has to give the poor guy a bad time so he's not quite sure what to think of the whole thing. When Jon told him we were using a natural product and that he didn't take the meds to raise his white count he practically fell out of his chair. The first question he asked was how much it cost. When I told him my cost was around $12 and that it would sell for $25 or so at a health food store he was even more stunned. Next he asked how many pills were in a bottle. They guy just couldn't believe that we could obtain something that effective for the price. That led to a discussion of the pharmaceutical companies and their power in health care. We were teasing him about the elaborate lunches they bring to SCTWC and Dr. Chan said "Oh, they've really toned that down, they use to take us on exotic vacations but that's been illegal for about ten years." Wow...ever wonder what drives our healthcare system??

Dr. Chan went on to say that he really enjoyed working at SCTWC and how different it was from his former job. He was excited to tell us that he has referred other pancreatic cancer patients to Dr. Chue and they have actually lived for up to three years. As he was leaving the room Jon said, "Dr. Chan, just want to let you know, I plan on living a lot longer then three years...I'm shooting for 90 or so." Dr. Chan was a little flustered and said "Yes, of course that is our goal"

When our mind and body therapist, Robin paid us a visit later in the day we told her the story. Jon said she had a little work to do in the Hope department with our new Dr. Chan. Robin thanked Jon for what he had said to Dr. Chan and commented that the learning curve is quite steep for doctors coming in form other facilities.

So all in all a successful day. Jon continues to kick cancer's ass. I am asking that the PET scan be scheduled after next Tuesday's chemo.

Today was a pretty good day. Jon and Kelsey were up at 6:30 and out the door by 7. Both reported having a really good time and lots of snow in the mountains. Jon was impressed with Kelsey's shooting abilities and bragged about the "big guns" he was able to handle. Jon says he feels better today, he thinks his past few days are the result of the week of Tarceva and a cold. He's still refusing the lukeine and taking the supplements. I guess if his white count is still low he will just get another week off. I hate for him to miss any chemos because I am driven to have the PET scan before Christmas but you all know Jon, he's going to do it his way.

I'm posting some pictures of our granddaughter, Maelie. Last weekend was Levi and Ericka's first full weekend with her. They had us over for dinner and we all spent the entire evening just watching her. She is hilarious and full of energy, a Nichols through and through!

Looks like the big, bad Jon has finally hit the wall. He ran out of steam Thursday afternoon and has felt really tired and crappy ever since. I suppose we can't complain after 35 chemos a guy's got to get a little run down. I am trying to convince him to take the Lukiene but not luck so far...I guess I could just surprise him with a syringe in the middle of the night! Chemo is scheduled again for Tuesday but he won't get it if his white count doesn't come up.

We had a visit from our friend Martin and Valerie yesterday on their way back from Hawaii to Montana. It was great to see them and perked Jon up a bit. Kelsey and I are going to get our Christmas tree today and put up the Christmas lights. All the men are planning on going up to the mountains for some jeeping and shooting tomorrow. I hope Jon is up to it, he has a new rifle that he loves and always enjoys the opportunity to hang out with Levi and Kelsey.

The Chue Master Is Back

Today was the first time Dr. Chue has seen Jon in over a month. He was out of the office recovering from glaucoma surgery. He seems to be doing well and is more of a genius then ever. We had been wondering about a new drug called Nexavar that was just recently approved for primary liver cancer. We had been asking everyone at SCTWC about it and no one gave us much information. Jon asked Dr. Chue about it today and, of course, received a detailed lecture on the molecular structure and physiological effects of the drug. How does that guy keep so much information in his head??? When he talks he kind of reminds me of a computer...you ask him a questions and he looks up at the ceiling and hums, like the rest of us do when we're searching the web but he is just processing through his brain. Then after a few seconds he give you a dissertation on the subject with annotated footnotes, names and dates. It is amazing!

Jon's absolute nuetrophils (type of white blood cell) were low today to the point where they sent him home with Luekine (injectable medication to raise his count). Rex was his escort today and was kind enough to call me to let me know Jon would be hiding the syringes from me and was already refusing the medication. Then Jon called and asked me to find a supplement to fix it. I did and we should have it delivered tomorrow, hopefully it will do the trick. If his count gets any lower he will have to skip a week of chemo which would prolong treatment past Christmas. We've been here before and he has always managed to get back in the normal range so I'm not overly concerned. Three more to go and then the PET scan!

This Blogs for You

For all of you who don't get to see Jon often I just want to assure you that he is as well and crazy as ever. Here is a recent picture after his "upper body work out"

Our photo session started after reflecting on this last year...I have a burning desire to visit every health care provider who told us Jon wouldn't live to see this Thanksgiving. I actually have an appointment with our family doctor in a couple of weeks for a physical. She was the unfortunate one who discovered the cancer then very kindly and sincerely told me that Jon would probably not live the year and that she wouldn't recommend chemo since he was terminal and it would be so hard on him. It's sad because she was completely sincere and honest. I am going to introduce her to Dr. Chue and bring this picture to my appointment. I don't fault any of the doctors who told us what they did, they are giving us what they learned in medical school. But we do want them to know that there is always hope and alternatives for their patients.

I realize we're not out of the woods yet and appreciate every day for the miracle that it is.

Jon is goosehunting this weekend :)

Happy Thanksgiving

This Thanksgiving we have so much to be grateful for! I think back on a year ago tonight and I was sitting in my office with the radiologist from Center for Diagnostic Imaging on my land line and two oncologists on my cell phone. Jon had just completed his first MRI and we were working to persuade the oncologist to order a PET scan. At that point we were still unsure of where his cancer had originated and what course of treatment we were going to pursue. Thanksgiving day was particularly difficult because the entire family was here and I still couldn't talk about the Big C. Jon had asked me not to tell anyone until we were clear on the diagnosis and our plan of attack. He also wanted to be sure that we told our children first. Being the talkaholic that I am it was almost impossible for me to keep that kind of secret for nearly a month and celebrate a holiday like nothing was wrong. After Thanksgiving dinner Jon took Levi into his office and gave him the news. I told Elizabeth on the weekend while we stayed in Seattle. The following Tuesday Jon had his first chemo then boarded a plane for California so he could tell Staci. We told Kelsey and Staci simultaneously. Next were our parents, brothers, and sisters...Jon left most of those up to me. It's so weird how burdensome it is to share that kind of news, it pains you to know that what you're about to say will break a persons heart.

As most of you know the rest of the year has been a roller coaster. Jon lost 18 pounds with his first two chemos and his followup CT scan showed no improvement. It was only then that he agreed to see Dr. Chue for a consultation (the first time I suggested it he threw the papers back and me and told me I should "quit listening to that Madison Avenue bullshit!") There isn't a day that goes by that I don't thank God for Dr. Chue. He is the person that gave Jon hope and without hope in this battle you have nothing. In March Jon was hospitalized with double pneumonia where the doctors didn't expect him to live 24 hours. He spent most of June and half of July in bed, on a good day he could make it to the couch. Today he is stronger, healthier and wiser than ever. This has been a journey of the physical and the spiritual, the emotional and the psychological...through it all Jon has managed to keep his sense of humor, strength and determination. We are better for it, both as individuals and as partners. Thanks to everyone for your continued encouragement, prayers, love and support, we could have never made it this far without you.

Happy Thanksgiving!

Chemo Tuesday

Here we are back at chemo. Jon's had a pretty good week but he has been a little more tired then usual. His hemoglobin, hematocrit and platelets were slightly low this time which would account for the increased fatigue. Next week is our week off so that will give him a chance to rebound. This has been by far the best session of chemo with minimal side effects. He seems to tolerate the Tarceva just find if he takes the lower dose during the week off from intravenous chemo.

Dr. Chue has been out of the office for the past month or so. He had eye surgery for glaucoma and his vision is coming back very slowly. The report is that he was able to read for the first time yesterday but is still unable to drive. It might be a few more weeks until we see him. In his absence the rest of the staff has taken excellent care of Jon. We had a long discussion with Dr. Reilly last week about the radiofreuqency albation versus a liver resection. The jury is still out on any surgery until after the PET scan in December. We are praying that Dr. Chue will be back in time to help us make those decisions. Jon is adamantly opposed to a surgery as invasive as a resection, however both Dr. Reilly and Dr. Chue have indicated that it might be his best hope for a complete cure. The ablation is still a good option but he would require more chemo afterwards. These are difficult decisions and of course ultimately up to Jon.

We are looking forward to our week off and Thanksgiving at Tonya and Tony's this year. Elizabeth and I both have this Thursday off and are planning on baking pumpkin pies and Christmas cookies all day. I don't think we've done that together in ten years!

A Personal Cancer Story

Jon has been after me to post this email from Kelli on the blog for the past week. Although we received Kelli's permission to share her letter I have felt hesitant to do so. It is such an intimate view of life and death in the cancer world it's almost sacred. Of course all of you that know Jon will appreciate that he won't give it up (kind of like his marriage proposals???) so here it is. It is the story of her final moments with her husband. It is honest, painful and extremely well written. Everyone who reads this should know that Kelli and her boys are doing as well as anyone possibly could under the circumstances. We still email frequently and plan to stay in touch. Kelli remains one of our most ardent cheerleaders in "kicking cancers butt!"



Wow, life seems surreal right now. I just can't believe it, though in reality I knew it was coming, but you always have to hold on to hope. You know...Throughout this whole cancer journey we've had to deal with so much bad news and so much hurt. We've gone through the failed chemo, failed surgery, failed transplant, you're gonna die, etc. I've always thought to myself that when it's Paul's time to go, I want to be somewhat blind-sided and I don't ever want to feel like we've lost hope, not even in the very end. I never wanted to it be like...Sorry, no more chemo, you have three months to live, go home (we went through that at the SCCA and know how it feels). I always wanted the hope that this could turn around, because feeling hopeless is too painful. If Paul were to have to go I wanted it to be fast. So, I guess Paul's departure from this earth was everything that I could've asked for given the situation. I am still forever grateful to Dr. Chue for the couple of extra months that he gave us while still maintaining a quality of life for Paul (minus the past few weeks). Though the chemo stopped palliating the cancer in the end, it continued to palliate our spirits and I am grateful for that as well. Paul always told me that he didn't want to die in the hospital, but this just felt right. Paul was never told that "he was dying", but at the same time he never questioned why after his transfusion he didn't go home. I think he knew as well as us. Heck, he knew it Saturday when he told me he was done and not going in for treatment on Monday (though he ended up going for everyone else). It broke my heart having to wheel Paul into the hospital for his transfusion, because he just could no longer walk. Prior to cancer Paul was a machine. He was the most physically fit and active person I knew, a hard worker, and extremely conscious of his health. I did not like seeing him have to lay in bed all day, having to deal with the neuropathy, joint pain, etc. Dr. Chen handled it well too. He came to Swedish to examine Paul and was just like...Hey Paul! I'm just here to say hi and check you out! When he was done, he was just like...Alright, see you later Paul. Just natural, upbeat, and like a typical doctor doing his rounds. I spoke to him outside and he told me that Paul's right lung had no air movement anymore, and his left lung sounded really bad. He only had about 1/4 of his left lung that was working. He told us that Paul could be gone in a day, maybe three at the most. It was sickening how fast the cancer grew. Each day you could just hear in his breathing and cough how much worse it got.

It was pretty neat, because the day after the transfusion Paul appeared to be very out of it (he had a high-dose morphine drip). Then he suddenly perked up and became responsive and we all got to spend time with him and tell him everything we wanted too. After we all stood around his bed and talked about all our fun times they scooted Paul over so I could lay in bed with him and take a nap. It was the most beautiful and sincere conversation I've ever had. I thank God for that time. The next day he was really bad. His morphine order went up to 10 (mg an hour) and he was at a 9. He could no longer talk, but he could nod. I saw him cringe and try to grab his chest...I asked him if he felt something and he nodded yes. I told him I'd take care of it and make sure he couldn't feel anything and he nodded. I told him that I would be there with him until the end and he nodded and I told him that I loved him and he nodded. Then the nurse came in and gave him a bollus of morhpine and told us that it would put Paul in a non-responsive state, and that was it. It was like his body went into a mechanical mode. He was jerking each time he took a breath, because he had no lung capacity. The nurse told us that he could be like that for several days. I had one last alone moment with Paul and prayed that the Lord would take him home...I told Paul that his work here was done, go be with God, it's time to go. Much to the suprise of the nurses, he went. I was holding him in my arms. I don't think I'll ever forget that day. I don't think I've ever felt pain so deep seeing him go. On the other hand I am so incredibly happy for him. He is now where we all strive to be and he finally killed that cancer. He told me he was ready, he was excited, and he was happy. I guess I couldn't ask for more. It's so hard though. I am happy, I am liberated from cancer, but I will miss him deeply. I miss his companionship and friendship. Paul was a man of extremely strong and deep faith and I know he is with God.

Today was super lame though...I had to start all of the funeral arraingements. I picked out his casket (NOT fun), purchased his plot, which they call "properties" and purchased one for myself while I was at it right next to him. I think it is the most beautiful spot in the cemetary (Mountain View Cemetary in Auburn). It is on the top of the hill with a beautiful view of Mt. Rainier, at the base of a small tree, and the headstone will include a beautiful bench for people to sit, reflect, and enjoy the view. Picking out the property was peaceful, but I certainly didn't enjoy the casket, vault, part. Then I had to pick out clothes for him to wear. :-/ Tough. It was hard to come home yesterday and see all of his clothes here, his razor, toothbrush, and everything as we had left it on Monday. The first thing I did when I got home was throw away all of the meds he had to take. It felt good. No more cough syrup, morpine, codeine, and anti-nauseas. No more pink throw-up buckets. No more anything like that. It was liberating. Tonight was wierd. My sister-in-law and I went to the grocery store and got some dinner at 9:00 tonight. I can't tell you how wierd it was to just be able to leave the house, not worry about arrainging for someone to stay with Paul, worrying if he would be okay, or having to have someone else go for me. I've been a 24 hour caregiver for so long. And Paul was not a burden, but the cancer was. No more tumor markers, no more CT Scans, we're finally done.

Thank you guys for visiting Paul the other day. He really enjoyed that. He enjoyed talking to Jon and you because you guys know what it's like. He was so very thankful for Jon taking him up to Mark Jane's. That gave us our last quality night when Paul actually had the energy to come downstairs and watch a movie.

Anyway, the service will be on Tuesday at our church with viewings on Saturday and Monday night. Viewings are kind of wierd. I don't much care to go, but it's more for other people than myself. Well, I guess I'm going to go try to sleep now. I actually stayed up for two whole nights at the hospital!!!

Talk to you soon,
Kelli

More On Paul and Kelli

Today was Paul Hutton's Memorial Service. The family did an excellent job of celebrating and honoring Paul's life. Kelli and the boys have a tremendous amount of support from both sides of the family and everyone was there in full-force today.

Kelli and I have exchange many e-mails during our cancer battles. As you can imagine the ones over the past few weeks have touched Jon and I deeply. We have asked Kelli's permission to share some of them on our blog. The one that follows was sent two days after Paul's passing.

Hi Lorri,

The weirdest thing happened to me tonight and I just had to share this with you. I will start out by saying that I am not a "ghost" type person, I have never seen anything with my own eyes to think otherwise. Anyway, ever since Paul passed away I have noticed at night that the lamp by our bed has been turned on. Things have been really hectic for me and my mom is staying with me for awhile, so I just figured maybe I forgot to turn it off, or maybe my mom turned it on to make it cozy. However, I still thought it was kind of strange, because I am notoriously obsessive-compulsive about turning off lights when I'm not in the room. Anyway, this morning I couldn't stop thinking about the lamp. So, before I left (had to go to my aunt's funeral) I SPECIFICALLY made sure the lamp was off and SPECIFICALLY made sure the light switch was off (because the lamp is attached to the light switch). Then I DOUBLE CHECKED it and know for certain, it was off. Tonight when I came home and took my shoes off I noticed a glow coming from upstairs. I went up there and sure enough...Our bedroom lamp was on. I had the most warm, comforting feeling come over me, and I just know it was Paul telling me that he's okay. I am just beside myself, because I know with 100% certainty that the light was off when I left!

Is that weird or what???!!!???

One Year Post Diagnosis

All in all it's been a pretty good weekend (and surprisingly a really good year!). Friday night was our dinner celebration at Jimmy Macks in honor of the three Nichols men...Levi for being recently unemployed, Jon for still being alive, and Kelsey for being newly employed. To be more specific, Levi had his last day at TDS and will begin a new job as an apprentice welder/glazier next week. Kelsey took in a job application to Papa Murphys and the manager was so impressed with him he told him he'd hire him the day he turned 16 (December 27). Jon's story is self-explanatory. When we were at SCTW on Tuesday I said to the nurses, "Now I know you have a lot of long term survivors here but honestly, do you have anyone who looks this good a year out from a pancreatic cancer diagnosis? I mean the guy is still working out three days a week and his blood work is perfect!" They fell all over him as he flexed his muscles and smiled. Yes, I know I shouldn't encourage his ego like that but I just couldn't help myself given the one year mark.

Saturday I had my annual Food and Clothing Drive at my office. We donate all of our services in exchange for donations of food and clothing for the Federal Way Food Bank. It's always a busy but rewarding day. Jon was feeling a kind of crappy all day (his crash day has moved from Thursday to Fri or Sat) so I drove him to meet with his new renter of the famous "Meth house" Saturday night. After signing the lease and eating dinner at our favorite Thai restaurant he felt much better :)

On Sunday morning we got up early to drop our dump trailer off for our friend Brian only to discover it was Daylight Savings and we could have slept in for an extra hour! We settled for Starbucks and church, with a nap this afternoon. I have received a couple of good emails from our friend Kelli Hutton, we were hoping to have a chance to see her today but no luck. Paul's service is Tuesday and we plan on zipping through chemo to be there when it starts at 1pm. She sounds like she is doing as well as could possibly be expected under the circumstances.

One thing that was really weird for me this weekend was that all of the kids were out of town. Elizabeth went with David to Cheney for Eastern's Homecoming, Kelsey and Levi went jeeping, and of course, Staci lives in California. It felt really strange not having any of them around for 48 hours. I am grateful that the three of them live so close and that we get to see Staci as often as we do. With any luck there will be a few more grandchildren on the horizon.

Jon just got done working out and said his aerobic capacity was a little low. It's usually the first thing to go with chemo. He has two more sessions then his week off. I wouldn't be surprised to see his red count down a little on Tuesday with him showing a few side effects. The four weeks on/one week off program seems to be working pretty well and keeping his side effects to a minimum. I guess we will know for sure when we get the PET scan in December. So when everyone asks me what I want for Christmas this year my answer will be 1.A negative PET scan or 2. Liver tumors under 4x7.5cm and amenable to ablation.

I am so grateful for every one's love and support in the past year. I can't say enough about SCTWC because I know without them my husband would not be alive. The medical treatment, holistic approach, hope and encouragement they have given us is beyond words. Thank you to all of our family, friends, and health care providers who have encouraged, prayed, loved and supported us through our cancer journey. The road ahead is still long and arduous but with all of your help I know we will persevere.

Paul and Kelli Hutton

Our friend Paul passed away today. He was surrounded by his wife Kelli and all of their family. Dena (Kelli's mom) has blogged that they were able to read the many messages of love and support sent on the Hutton blog throughout the day. Everyone is grateful that Paul is no longer suffering.

I can't say enough about what a remarkable young couple Paul and Kelli are. Their strength, hope, and perserverence is inspirational. They both have amazing family support for which I know they are grateful.

So tonight we honor Paul and pray for his spirit. We also pray for continued strength, comfort, and guidance to Kelli, their children Gabe and little Paul, and the parents, brothers and sisters of the Hutton/Wall family.

Jon and Lorri Nichols

Chemo Day

Back at chemo today. Jon's blood work remains perfect and for him it's been a pretty uneventful week. He keeps telling the staff at SCTWC that he's been cancer-free for months but he just enjoys the routine here and how everyone waits on him. He says it's like a vacation in a five-star hotel and his insurance picks up the tab. It's nice that he never seems to lose his sense of humor.

On a more serious note, we ask that you keep our friends Paul and Kelli Hutton in your prayers. Paul has been unable to receive chemo for the past few weeks as his blood counts have been too low. He has been at Swedish Hospital all night receiving blood and platelet transfusion in hopes of starting chemo again. He is also receiving high doses of morphine to control his cough so he's pretty out of it these days. Kelli blogs that he has been surrounded by family day and night.

A Few Wedding Photos

Levi and Ericka, September 15, 2007







Staci and Octavio, October 20, 2007





Father Daughter Dance

Jon Smiles

Remember the guy that would never smile? This picture is from Levi and Ericka's wedding and the smiles have only gotten bigger and broader in the last month. His hair has grown quite a bit more since this photo, too. All in all he looks pretty good for a guy that was supposed to be dead months ago.

Chemo Day

Back at chemo. Jon's blood counts are all completely in the normal range. His platelets have gone from 90 to 272. Unbelievable, says he feels better today then he has felt in two years!

November 2 is the one year anniversary date of his diagnosis. I'm thinking of throwing a Survival Party. Jon thinks I'm wierd :)

Back Home

We returned from California at about 1:30 this morning (our flight was delayed due to high winds). The wedding was beautiful and our happy bride and groom are off enjoying their honeymoon in Hawaii. I have given up being the family photographer because I was finding myself missing out on the activities when I was busy taking the pictures. As such, I am now relying on everyone else to do the job and email me pictures. I have a nice selection of Levi and Ericka but am now waiting for Staci and Octavios. I will do a good wedding picture post of both nuptials as soon as I am up to date with the newly married Marquezs.

Jon is doing amazingly well. He felt great during the entire trip even though he had his decayed tooth extracted on Tuesday without taking the recommended antibiotics first. Of course he woke up in the middle of the night with fever and chills which had subsided by Wednesday with Tylenol, mataki drops, and vitamin C. (Have I mentioned how bullheaded the guy is???) When I'm irritated from taking care of him at 2 in the morning because he didn't take the prescribed meds I remind myself that this is the exact stubbornness that will beat this cancer.

Jon's latest theory is that the combination of Tarceva, Gemzar, and Taxol superkilled his cancer cells. Although he felt like crap at the time he says he feels better now than he has since he was diagnosed. Our new schedule is the best of both worlds...intravenouses Gemzar and Taxol for four weeks, oral Tarceva for one week, and so on, until mid December. We also just found out about a new drug, Nexavar that works with a similiar mechanism as Tarceva but has been proven more effective for both kidney and liver cancer. Cancer cells frequently become immune to chemotherapies that have worked int the past so it is exciting to have as much ammunition in your arsenal as possible (did I just say ammunition? ...I think we've been married too long already.) So life here in the Nichols family is good.

Please remember in your prayers of friends Paul and Kelli Hutton. Paul was diagnosed with testicular cancer around the same time as Jon. He had failed all standard medical treatments and has been treating at SCTWC for the past few months. Although he had initial improvement the last week has been very difficult and his symptoms have rapidly worsened. As I am writing he is receiving a blood and platelet transfusion at Swedish Hospital in hopes of continuing his chemotherapy this week. Please send all of your love, prayers and positive thought to Paul, Kelli and their sons Gabe (3 yrs) and Paul Jr (4 months). Hope must always spring eternal in fighting this disease.

The Week Off

Levi, welcome to the computer age, Excellent Post!!!

FYI everyone, Jon bought a new pair of jeans yesterday :)

Jon felt great all weekend and called excitedly to tell me he "hiked right up that mountain" while hunting in the Methow Valley. Got back home Sunday night and started back on the evil Tarceva last night. He says if he starts feeling poorly he will stop it and check with Dr. Chue on an alternative during his weeks off.

So today is an all around excellent day. Jon feels and looks great. His hair is growing back, he's put on a few pounds, and is in good spirits. Today is also my birthday, we have the day off from chemo and I have the day off work. Our plan is to lounge around most of the day and go out to dinner tonight with the family. It's so nice to have Elizabeth back on this side of the mountain for these occasions.

So it looks like Jon will be feeling well for Staci and Octavio's wedding. I am so grateful that he's in good shape for the trip! We leave Thursday morning for the festivities and will be back late Sunday night. I will post some pictures early next week.

We received some disconcerting news last Tuesday while Jon was at chemo. It seems Aaron Barrett, our pancreatic survivor hero is back in treatment. The details are sketchy but apparently his cancer has reoccurred and was detected either in blood work or during a scan. He had been cancer free for two years. We will attempt to follow his progress.

All in all Jon's been feeling pretty good this week. The news about Aaron "took the wind out of his sails for a minute" but he's back to his old self. He is quite proud of the fact that he hasn't taken or felt like he's needed any pain medication in the last year. It was amusing during our visit with Dr. Reilly when he had asked Jon what he had been taking for pain and Jon responded "pain, why would I take something for that?" He also, of course informed Dr. Reilly of his favorite Marine Corp saying, "Pain is Weakness Leaving The Body" or maybe cancer leaving the body in this case!

Today is the usual crash and burn day but it seemed to go much better without the Tarceva. He is packing right now to go deer hunting for the weekend with his friend Jeremy. Hopefully his energy will hold out for the trip.

One final dilemma...remember the jeans scenario from last year? Well the two pair he finally bought are now starting to wear out. He just can't decide if he should spring for a new pair or just keep wearing the old ones just in case he doesn't live long enough to get his monies worth out of another new pair. He finally settled on asking me if I can patch them for him. Maybe I'll just do some shopping over the weekend instead!

Platelets On The Rise

Jon has successfully managed to raise his platelets from 90 to 142 with sesame oil. Yes, it's the stuff you buy off the shelf at the specialty grocery store. He takes two tablespoons orally and two topically (you can imagine he's really tried to work that equation with me!) As a result, he was able to receive all of his chemo today and is in good spirits.

Kristi is still visiting from Japan so she did the honors and escorted Jon to chemo today. I took the day off and did all those important things I never get around to like my own doctors appointments, laundry, oil change, etc. I'm just about to pick up Kelsey to take him job hunting before his guitar lesson at 5.

We had a good trip to Vancouver last weekend. I attended meetings and Jon napped in the hotel room during the day. We had dinner with some of the other Commission members and it was a great opportunity for Jon to get to know more of my colleagues. Last Friday I was short staffed at the office so Jon showed up in the afternoon wearing a button down shirt and his "dress" black jeans to fill in for my receptionist. I don't think Sarah is in any danger of being replaced but it was pretty entertaining to watch him interact with all of my patients. I have to admit there is never a dull moment around here.

So we're on track for having next week off to celebrate Ocativo and Staci's nuptials on the 20th!

Down with Tarceva

All I can say is that Tarceva has got to go! Jon has been remarkably better this week. It is amazing how differently a person can tolerate the variety of chemotherapies. He has done great since Monday and had a decent work out yesterday. Today is his usual "crash and burn" but Jon managed with a short nap and just left to take Kelsey to piano lessons so I can get our dinner going. (We found this awesome studio in Puyallup and Kelsey is growing by leaps and bounds in his music.) We are going to town with the sesame oil (right on, Dena!) in hopes of raising his platelets so we can continue the Gemzar. We are motivated to stay on schedule so that we can have the week off for Staci and Octavio's wedding. We also just realized that if he stays on schedule we can have Tuesday, October 16 to ourselves which just happens to be my birthday. I might drag him to the mountains instead of spending the whole day hooked up to an IV-they say its already snowing at 3500 feet!

So at least for today things are looking up...

We're back at chemo today. Jon decided to stop the Tarceva but continues with the Gemzar and Taxol. Everyone here seems to agree that its the Tarceva that's making him feel so poorly and he does seem somewhat better since he discontinued it. Dr. Chue agreed that he can take the Tarceva only during his "week off." His platelets were so low today that they considered not doing the intravenous chemo but went forward with the caution that if they drop any further he will not be able to receive chemo next week. He is supposed to be using Rapunzels cold press sesame seed oil both internally and externally to raise his platelet count (yes, I am totally serious!). For some reason he didn't take it last week but is motivated to follow up now. His white counts were up a little, just slightly out of the normal range. The doctor originally said he could have his decayed tooth extracted if the white count was good, but she put the kibosh on it when she saw his platelet count. One more incentive to get that sesame oil going.

We had an excellent meeting with Dr Reilly today (naturopath extraordinaire). He outlined a detailed plan for Jon's supplement regime specific to this round of chemo. Jon was much more forthcoming with his side effects than he's been in the past and actually answered all of the doctors questions. I think he might have finally realized that the more information you give your caregivers the better the final outcome might be.

So we'll see how this week goes. I have a Department of Health retreat in Vancouver on Saturday and Sunday so I will be working all weekend. If Jon's up to it he will tag along, if not he will be in town to celebrate Tony and Tonya's 25th Wedding Anniversary. We have learned to just "go with the flow" these days.

CANCER SUCKS

So far I am not impressed with this current round of chemo! It's never much fun, but at least with the prior rounds Jon didn't start going downhill for at least a month. This time around he's tired, nauseous, and "feels like shit" from Thursday until Monday. I don't know if its the addition of the oral Tarceva or the fact that he has been through this so many times that his body's resistance is depleted. That's fairly surprising considering how strong he appeared in August and early September. We were both optimistic that we had some more time before all the side effects started so we are reassessing our plan and "battening down the hatches" for the next few months.

We have an appointment with Dr. Reilly (naturopath at SCTWC) this Tuesday. He made a quickie appearance last week when Jon's platelets and WBCs took a nose dive, but this week will be a longer visit with an opportunity develop a more comprehensive game plan. I would also like to touch base with Dr. Chue about the Tarceva. His attitude in the past seemed to be to "take it as long as you can tolerate it." That's what he was on when he ended up in the hospital with double pneumonia last March.

Rex has called us with some great input from MaryJane Mack and Dr. Versendal who have also treated Jon this past year (more nutritional support and light therapy). Jon is talking about working that into the equation as well. I vote for covering every base we can. MaryJane is has been helping me with nutritional supplementation to keep me sane through this process-I'm planning on seeing her myself for a recheck next week :)

Just to add a little more to the mix, Jon has a decayed tooth that needs to be extracted since his braces have been removed (for those of you who haven't seen him, his teeth look great!). For most people that's not a big deal but when you're on chemo and your white cell count is low it can create a serious infection. The Physicians Assistant asked Jon to wait until his white count is in the normal range to have it pulled but he wants to do it on Monday. With any luck the dentist won't be able to get him in until Wednesday and we'll have his Tuesday blood work back before the procedure. You know Jon, he "does as he fees!"

So for all of you in the prayer lines, I'm cranking up the power! Thank you for your continued support.

Chemo #2

On the way to chemo this morning Jon said that he feels better and stronger now than before he started his first chemos last year :) From where I sit, that has appeared to be the case but it's nice to hear confirmation from him.

For the most part chemo was pretty uneventful today. His white counts and platelets were down a little which is somewhat disconcerting since they seemed to hold pretty strong for the first 4-5 chemos with the earlier sessions. We do, however, feel much more informed and well equipped to handle the ups and downs of the blood counts. He starts tonight on Matike mushroom extract for the white count and sesame oil for the platelets. He's just finishing up with acupuncture while I write and we will be heading home to get Kelsey to his guitar lessons.

We were looking at the calendar today and confirmed that Jon's week off from chemo will fall on the Tuesday before Staci and Octavio's wedding (good planning, Stac!)
That should mean Jon will be feeling well and able to enjoy all the wedding festivities!

Friday and Saturday haven't been too bad. I was surprised to see Jon up early to drive with Kelsey to school Friday morning (Kelsey has his learner's permit and Jon has been driving to school with him each morning to give him some driving practice.) He was a little nauseous in the morning so when he stopped by my office I gave him Altoids and sparkling water which seemed helped considerably (go figure?? I guess its better than Compazine). He napped, worked out and then we went to the high school football game after work. This morning we celebrated Granny's 84th birthday with Tonya, Kristi, Kelsey, and Steve. He's taking his afternoon nap on the living room floor and planning a UFC (Ultimate Fighting) party with all the guys tonight. I am going to see a chick flick with the girlfriends, that's just way too much testosterone in one place for me!!

Here We Go...

Jon had his first official crash and burn tonight. We got all our office work done this morning and went to the Puyallup fair for the afternoon. He seemed great all day. We got home around 4:30 and he said he was going to take a nap, then work out. About 7pm I thought I'd better go wake him. He awoke to have dinner but then moved directly to the couch. He's really tired and "feels like shit", his face is already beet red from the Tarceva.

We went to fill his prescription today (to the tune of $3000 for our out-of-pocket portion). After feeling so badly tonight he asked me to wait to pick it up, since it made him so sick last time. We will see how he does this week and check with Dr. Chue on Tuesday. It amazes me how fast he can go from good to bad :(

Back In The Saddle

The first day back at chemo went pretty well. We had our favorite nurse, Dee, who is pregnant and due in October. She knows Jon very well and takes his idiosyncrasies in stride. We also had a visit with Dr. Chue. It took us a while to decide what chemo cocktail to go with because, as the Chue Chue likes to say, we are "making history". We settled for a combination of Gemzar and Taxol intravenously on a weekly basis with 100mg of Tarceva daily. Jon will get one week off every four weeks in hopes of dissipating the cumulative side effects of chemo. He also promises to let us know his side effect symptoms prior to him requiring a visit to the ER this time (I'm not sure I really buy that one). His alkaline phosphatase was somewhat elevate (174) and his liver slightly enlarged. It concerns me that maybe the tumors there have grown a bit during our "vacation" but he is otherwise strong and healthy.

Everyone is in good humor tonight. My parents are still visiting and made us a wonderful dinner, we told lots of stories and laughed through the whole meal. The nurses have finally mastered Jon's steroid dosage so he should sleep ok tonight. Oh, except for when he picks Levi and Ericka up at the airport at 1am!! My parents leave for PA at 6:00am so I guess it will be another semi sleepless night here at the Nichols! We are all a little tired but have thoroughly enjoyed this special time with our family.

Levi and Ericka's wedding was a smashing success! They both glowed with happiness throughout the whole thing. (well once Levi got all those tables and decorations set up!) They are currently honeymooning in Las Vegas and will be back Tuesday night. Thank you to everyone who helped make this beautiful event possible. Jon and I slept until 10am Sunday, got up to clean up and return tuxes, keg, etc then went back to sleep for a few hours. I feel almost normal today. I was so busy with all of the festivities I never took pictures so everyone that has them please email to me. Ericka found an incredible photographer and I am looking forward to seeing his pictures. I will post some on the blog as soon as someone sends me some (Liz, you promised!)

Jon felt great for the wedding and has been quite sentimental. He is so proud of Levi and really enjoyed having all the family together for the event. We couldn't be happier with our new daughter-in-law and are anticipating more grandchildren soon.

Tomorrow is D day with the start of the fourth round of chemo. It's good to see Jon going in strong. My parents are still here and will get to come along for the ride. Jon does have a tendency to make the whole thing a bit of a party (or is that a circus?). He has managed to maintain his sense of humor and we actually have fun most of the time on chemo days, its the crash and burn on Thursdays that sucks. I expect to be back writing more frequently as the next part of this adventure unfolds.

Levi's wedding is just around the corner and we have been working hard to get everything ready. It's been an exciting time for all of us. Jon's been feeling a little "punky" the past few days and I'm not really sure why. He's worked hard in the yard and has increased the intensity of his workouts in the past few weeks. He's also been doing some different kinds of detox and I think maybe his electrolytes might be low or it's an accumulation of the Interferon. At any rate, I pumped him full of water and electrolyte mix today so we'll see how that goes.

Everything is falling nicely into place for Levi and Ericka's wedding. The house is almost ready and we made the Costco run today. Kelsey's been helping with all the yard and deck preparation and has gone back to school (3 honors classes which mean LOTS of homework). Levi and Ericka are taking care of all of the last minute details. Staci and Octavio get here tomorrow night, Elizabeth and David will be her Saturday and so will my parents! It should be a wonderful wedding with about 170 guests. I will post some pictures on the blog.

I feel like we're coming to an end of an era with chemo starting next Tuesday (thanks for all your thought and well-wishes, LoriB). It's been a wonderful month and we are both ready to take on the next challenge and "kick some ass" as my husband likes to say. Keep us in your thoughts and prayers as we move forward to the next chapter.

It's been an exceptional few weeks since I last blogged. Jon and I are on a second honeymoon since our trip to Mazama where we hiked, biked, and tubed down the Mazama river. As much as we missed Kelsey on his many summer adventures we enjoyed the opportunity to spend all this time alone together. Jon would even have dinner and a glass of wine ready for me when I got home from work! His cooking has actually improved a little bit :)

Our trip to Pennsylvania was wonderful. I enjoyed the opportunity to show Jon where I grew up and the time with my family. He kept saying, "Doc, this is Norman Rockwell meets Ozzie and Harriet!" So true!

Since we've been home we continue to work on the yard and house to get it ready for Levi and Ericka's wedding. This weekend we move Elizabeth from Cheney to Bellevue. I am sooo excited to have her closer to home! Kelsey is ready to start his Sophmore year in High School with try outs for the golf team on Wednesday. Next will be Staci and Octavio's wedding in California.

I have to admit, I am not looking forward to starting chemo again on September 18. I've so much enjoyed having my husband back. I'm savoring every moment we've had together and hoping that this is our last go around with chemotherapy. From where I sit Jon is even stronger going into this round of chemo then the first. Dr. Chue is also planning on giving Jon one week off after every four weeks. With any hope this series will be a bit easier and the ablation will take place in January. I continue to be amazed at Jon's strength and determination. The man has truly everything it takes to recover. Did I mention how happy he is to be alive???

NO NEWS IS STILL GOOD NEWS

Nothing much to report these days. Jon did go on a 4 day backpacking trip with the Bartran Family which he thoroughly enjoyed. He did mention that it felt like he walked 90 miles on his hike out instead of 9 :). His stomach is much better with his current supplement regime, he tires more easily than normal but still manages to get a fair amount of work done each day. I scheduled all of his upcoming chemos which will start again September 18. He will go through January at which time we will do another PET scan to see if he is a candidate for the ablation. Keep him(us) in your thoughts and prayers!

The First Anniversary

We had a fabulous time on our trip back to the Freestone. Our favorite part of the wedding was the entire lodge and weekend filled with all of our friends and family. It was a little weird when we arrived this time and were surrounded by strangers. We couldn't help but feel "what are all you people doing in our lodge and where are our loved ones??"

We mountain biked, did some sightseeing, went to an outdoor concert and floated inner tubes down the Methow River. The weather hot, sunny, and no forest fires this year. I am eternally grateful for the opportunity to celebrate our first year of marriage.

We had a pleasant surprise from Martin last night with a visit en route to Alaska. It's difficult for Jon to not be going along but he's taking it in stride. Jon is leaving Thursday for a backpacking trip with the Bartrans. I wish I could go along but someone around here has to work!

Kelsey is home for a few days before he flies to New York to visit my sister, Barbara. We meet him in Pennsylvania to celebrate my parents 50th with the Cunsolo side of the family. Elizabeth will be here this weekend for a job interview at the Bellevue Nordstoms and to finalize her apartment. Staci and Levi continue with wedding plans and everything is falling nicely into place. Tonya is hosting a bridal shower for Ericka on Saturday and it will be our first opportunity to meet her mom and sisters.

Jon is feeling good and getting stronger everyday. His only complaint is that a young, female track star from Sumner High kicked his ass running up Lakeland Hills today...not too bad for a guy who was supposed to be dead months ago.

He Really Does Dance

Jon doing "The Dip" with Lori Belinski

It's been an absolutely excellent week. Jon has felt great since last Monday and is working and working out regularly. We had a wonderful time at our friends, Gary and Eileen's wedding, complete with Jon dancing with me and everyone one of my girlfriends. (pictures will follow!) We topped off the weekend with a mountain bike ride from Pete Lake to Cooper Lake near Roslyn. In typical Jon fashion, the ride started out through some wooded trails, after our first turn off we were forced to carry our bikes up a steep, rocky side of a mountain, (did I mention it was 90 degrees and the mosquitoes were attacking?) then down a forest service road through the woods. When we got to the top of the mountain there was a beautiful meadow of wildflowers and wild strawberries. The strawberries were about 5mm in diameter but had a concentrated flavor like eating 20 normal sized ones. It was cool to be doing some of our regular stuff again!

We leave Thursday for our trip back to the Freestone. We are planning a mountain bike ride down Slate's pass and some day hikes....then some relaxing by the pool. Kelsey is visiting Savannah, his friend in Atlanta, Elizabeth is preparing her move back to Seattle (Yeah! we sold the Cheney house) while Staci and Levi are busily planning their weddings. All in all some very exciting times for our family!

Will He Ever Learn?

It's truly amazing but when Jon actually followed the doctors orders he began to feel much better. His stomach barely bothers him and his energy level is that of a normal person (which, of course, is still not Jon's previous level.) His only recent complaint is sore muscles from his workouts!

It's been a fairly uneventful week. Jon is at a plateau with his energy, still requiring about two naps a day but he is more physically active. He's lifted weights and walked Lakeland Hills twice in the past week. He traveled to Cheney with Kelsey and I to help Elizabeth get our rental house ready to sell. He could do a task, take a nap, etc. His stomach remains painful and sensitive. I was not impressed when he told me he's going to start taking the mediciation Dr. Chue prescribed to him two months ago (He promised he'd take it last month but hasn't followed through-I guess he's just a slow learner). His hair and fingernails are growing back and his mood is good.

Kelsey leaves for a visit to Staci's on Wednesday while Jon and I attend Eileen and Gary's wedding at their cabin in Roslyn this weekend. Next week it's back to the Freestone for our one year anniversary! Jon's promising day hikes and mountain bike rides. Let's hope he's up to it!!

Back to Work

Jon's been attempting to work on one of his foreclosure houses this week. It's pretty funny because he leaves for work when I do, but he uses all his energy getting there. Then he naps for a few hours before he has enough energy to do any work. Then, of course, he needs a break for lunch. After lunch he puts in a few hours and feels a reasonable sense of accomplishment before heading home for dinner. Don't laugh, its progress!

Stac, I've asked him to wait the entire three months before restarting chemo. He may not think he needs the break, but the rest of us do. I want to make sure he is ready and able to dance with you at your wedding!

Getting Stronger

Today is the first day in months that Jon has officially felt "Good". Yesterday we walked Lakeland Hills together (long steep hill by our house) but he still needed two naps to be able to do it. Today he awoke at 6:30 to go jeeping with Levi and actually seemed like his old self (minus the hair!) His stomach is improving (we'll see how it tolerates six hours of jeeping?) and his energy level, toes, and fingers are much better.

He will begin lifting weights tomorrow and work on getting some strength back. He is planning on taking the month of August off from chemo and then starting back in September. That is one less month than he's allowed but a good compromise between getting strong and getting through the last of the chemos.

Its been a long nine months and I am excited to have the old Jon back, even if its just for a month or two. We might get a short backpacking trip in this summer after all!

We saw Master Chue today. He told us that Jon could safely have a three month break from chemo using the Interferon to keep him stable. He is tolerating the Interferon well, but still hasn't recovered from this last series of chemo. His toes and fingers have stopped bleeding, his nosebleeds have slowed down, and he can stay out of bed most of the day. Any physical labor is still difficult but his energy level is slightly better each day. His stomach still hurts all of the time and I am going to put a call into Dr. Chue tomorrow since Jon failed to mention it during our appointment.

I would say that Jon is relieved he can have that much leeway to recover but, at the same time, is anxious to get through this process. Surprisingly, he agreed to try the oxyplatin again, but this time with four weeks on, one week off. His plan is to start working out as soon as his energy returns, then start back on chemo once he feels strong and ready for the next fight. I would expect that to be sometime towards the end of August, but he can wait until early October if need be.

We are going to take a trip back to Mazama to celebrate our first anniversary on August 5. We are also going to visit my family in Pennsylvania for my parents 50th wedding anniversary on August 25.

Today I am grateful for:
1. The opportunity to celebrate our first anniversary.
2. Jon making the trip to Pa with me to visit my family and see the town I grew up in.
3. Jon being healthy enough to attend Levi and Staci's weddings
4-10. Dr Chue and everyone at SCTWC
11. Everyone reading this blog who continues to inspire us with all of your love, prayers, and support. Thank You!

CT RESULTS

The good news is there was no cancer detected in the pancreas! Bad news is that one of the liver tumors is too large for an ablation right now. It is also the one next to the Superior Vena Cava. Dr. Precht told us there are some surgeons at Stanford University we could consult for a second opinion, but we aren't going to pursue that right now. So its onto one more round of chemo and then a CT scan some time in the fall. At that point we will reconsider the ablation. Of course, there always remains the possibility that they could be gone after the next round. Right now Jon is still on Interferon which doesn't appear to have any side effects. We see Dr. Chu next Tuesday to plan the next course of chemo. We are expecting to start again the end of July or early August.

The Surgical Consult

We saw the surgeon today and like most of the MDs (with the exception of Dr. Chue), his first reaction was "you realize you are dealing with pancreatic cancer, right? After reviewing all of the reports and scans he finally realized that we weren't crazy, just extremely well-informed, motivated, and still alive. Once we pursuaded him to our way of thinking he ordered another CT scan to clarify our options. To his credit, he made one phone call and we were in and out of radiology within an hour. We expect the results on Thursday so please keep those prayer coming!!

So hears the deal...The largest tumor in the liver abutts the Superior Vena Cava, a major vein in the thorax that supplies the heart, lungs, and all the major organs. If the tumor has not shrunk away from that vein then any kind of surgery is too risky right now. That means another round of chemo before the ablation is even possible. If this CT scan confirms that there is no longer cancer in the pancreas and the liver tumors have shrunk in the right direction then we all agree that the radio frequency ablation is the way to go. We also agree that a liver resection and removal of any part of the pancreas is far too risky. Either way Jon will have at least one more round of chemo.

He's feeling pretty decent today. His nose still bleeds and his toes and fingers hurt but his energy level is increasing and he actually looks pretty good. Yesterday he managed to shovel some beauty bark at his last foreclosure house. We are going to attempt Mt. Peak tomorrow and have everyone over for the barbq. I am excited that he will be out of bed and able to participate in the festivities. Attending Riley's wedding was a huge boost. We had a wonderful time and although he slept in the car most of the ride down and back he was able to fully participate in all of the festivities. It was a beautiful wedding on top of their 40 acre mountain home, complete with a log cabin built from the trees on their property. For any of you that remember Nancy and Gary Hudson, we were honored to accompany Nancy on this trip.

So, the saga continues. We are praying for the ablation, one more round of chemo and then a complete cure. It all feel completely within our grasp with a little more perseverance and fortitude.

More Stuff

So I've been studying the PET scan results and reading up on radiofrequency ablation. A couple of pieces of good news...When Jon had his first PET scan the largest tumors were almost 14cm at the widest part and had an SUV(intensity of tumor activity) of 8.9. In the most recent report it measures 9.6cm at its widest part and an SUV of 2.7. The reduction in the SUV is as significant as the reduction in size. It measures the tumor dying rather than growing. If you recall, all the small tumors are gone and that makes him a possible candidate for radiofrequency ablation. This procedure is done under local anesthesia on an outpatient basis. It would be very similar to the liver biopsy where they would penetrate the skin with the needle, guided by an ultrasound or CT scan. Once they made contact with the tumor they would "burn it out" with radio waves. They can cover and area of 3cm by 7cm in one burn, however, larger tumors have been ablated with two burns. This procedure would be much less invasive then a liver resection which is major surgery, wherein they remove your liver, cut out all the tumors and put it back. They could also take the affected lymph nodes during that procedure. As the lymph nodes are "stable" and the pancreas looks normal we are strongly leaning toward the ablation. The question will be if the surgeon feels he can ablate the tumor that is somewhat larger than the optimum candidate and if the lymph nodes and pancreas stable enough to not need removing. I would expect that one more round of chemo would ensure that the cancer is dead in those parts.

Jon told me today that there is no way he will take Oxyplatin again. That was the main chemotherapy agent in his last cocktail. Dr. Chue was somewhat reluctant to use Gemzar again so soon but that may be our best option, incorporating the one week breaks every four weeks to give Jon some recovery time.

Jon's feeling better every day. He was up and about all day and is just resting on the couch without a nap this evening. He won't let me give him any Interferon yet. I'll give him until Monday, then he gets it whether he wants it or not :)

We are also researching a pancreatic cancer vaccine developed at the University of Pittsburgh. My piano instructor sent us an article about it that we will give to Dr. Chue for his opinion.

We are excited to see the surgeon on Tuesday!

Kelsey and Jon found the cutest baby bunny in our yard today. Its about 4 inches long by 5 inches high. Kelsey is feeding it kitten formula with an eyedropper. We are going to try to rescue it and set it free when its big enough to survive on its own.

Surgical Consult

We have an appointment with Dr. Andrew Precht at Swedish Hospital in Seattle on Tuesday, July 3 at 1:30 pm. I tried to get in on Thursday but he couldn't see us because he will be busy climbing Mt. Ranier :). Jon really liked that-he figures if anyone is going to cut on him he should at least be able to climb a major mountain peak!

Jon's doing a little better today. He saw Mary Jane Mack this morning for a nutritional evaluation and some major light therapy. He felt good enough to meet me for lunch and run a few errands. This is the longest he's been out of bed for a week. We expect him to be stronger everyday and enjoy his month off of treatment.

We are leaving for Oregon on Friday to attend our friends Riley and Stephanie's wedding. Martin and Valerie will also be getting married this Saturday but since one is in Montana and one in Oregon we had to pick the one who invited us first. You might remember Martin from our barn party the night before our wedding. He entertained all of us with his singing and guitar music. Levi and Kelsey are leaving for five days of jeeping in Naches. Everyone should be home in time to celebrate Independence Day with our usual tradition of fireworks on the lake. Please guys, no shooting bottle rockets at each other this year!!!!

PET SCAN RESULTS

We met with Dr. Chue for the PET scan results at 9:15 this morning. The tumor in Jon's lung is gone as well as the "too numerous to count" tumors in his liver. The lymph nodes in the liver/pancreas area are called "stable" in the report. That means that they have been reduced in size and no longer "light up" in the PET scan, indicating that they are no longer malignant. What remains are two tumors in his liver which have been reduced in size and may be amenable to surgery. The report also stated that the head of the pancreas was enlarged, but reduced in size from the last PET scan. We all found that strange since the original PET scan did not comment on the pancreas and all other scans called the pancreas normal. We hypothesize that the pancreas may have been enlarged at the original site of the tumor but since they had no basis for comparison in the first report they were not aware of it until they were able to compare it to the currently reduced size. This confirms that the original diagnosis of pancreatic cancer was, indeed, correct. (remember that the original liver biopsy was inconclusive) Dr. Liao and Dr. Chue were excellent diagnosticians from the beginning.

The next step is to consult a surgeon recommended by Dr. Chue. We need to determine if Jon is a candidate for liver resection or radiofrequency ablation. It is possible that he could have surgery to remove the rest of the tumors. If they are still considered too large then we need to proceed with a third round of intravenous chemo and then potentially the surgery after that cycle. There is always the possibility that the next chemo could obliterate the last of the tumors. I will call the surgeon tomorrow to schedule an appointment.

Jon is pretty wiped out. He isn't too excited about having surgery but is open to the possibility if they can remove the liver tumor without having to address the pancreas. Dr. Chue would like the surgeon to biopsy the enlarged portion of the pancreas during surgery. Jon is adamantly opposed to removing his pancreas. It might be best to do one more round of chemo to shrink the remaining tumors and then opt for the radiofrequency ablation which is much less invasive than a liver resection. We will know more once we see the surgeon (who Dr. Chue calls "a cowboy"!)

Jon will start on Interferon tomorrow and is holding off on Tarceva until we see the surgeon. Dr. Chue is planning on giving him a month off to recover before initiating the next chemo cycle, if needed. He also informed us that Aaron (poster child for pancreatic cancer) was unable to tolerate the consecutive chemos for twelve weeks like Jon had, so they did four weeks on, one week off, for three cycles. He felt that Jon could repeat that process so that he is well enough for both Levi and Erikas wedding on Sept 15 and Staci and Octavios wedding on October 20th.

All in all the news is good. We were hoping for a complete remission but under the circumstances we were probably a little overly optimistic. I am grateful for Jon to have a month off, this last month has been really hard on him. The last thing Dr. Chue said before we left was "Jon, a cycle of chemo, then a surgery, then you are going to make history". You can't ask for more than that!

The Happy Couples

Staci & Octavio


Levi and Erika

HAPPY NEWS!!!!!!

Hi everyone! This is Staci writing...I flew up on Wednesday night with my boyfriend Octavio. Last night we all went to the big Mariners/Reds game (the first time Ken Griffey Jr. has played in Seattle since he left about 8 years ago). Octavio, Kelsey, & I spent the whole day in Seattle being tourist-y. During the 6th inning (Mariners were losing 15-1), Octavio got down on his knee and held a peach (yes, a peach) out to me. It was cut in half and pitted. Inside was a ring!!!! He asked me to marry him, and, after the shock wore off a second later, I SAID YES!!!!

(When Octavio & I first met , he had a dream that the devil was chasing him. Everyone was using guns & bombs to fight off the devil, but it wasn't working. Someone told him peaches were the only way to get rid of the devil. So he frantically searched for a peach tree, a can of peaches, anything...then he woke up. When he told me about the dream, I said I wanted to be his peach! I had totally forgotten the whole thing until last night :-)

So last night, I called Levi & told him the news...he had purchased a ring for his his girlfriend Ericka a few days prior. He decided he couldn't let Octavio steal his thunder, so he went in the garage and started making some noise to distract Ericka. He was planning to put on some romantic music but something wasn't working, so he started messing around with the fuse box....and accidentally turned off the power for the whole house. So he walked in the dark house with a candle and proposed in the dark!

Ericka & I haven't stopped smiling ever since!!! She told me her face hurt. I told her my teeth were dry.

As for the old Dad, apparently he's been having daily nose bleeds. He told me he gets them mostly at night. They are due to the chemo. There is blood on his sheets and pillow case and lamp shade and night stand :-( This morning Octavio made breakfast in bed for the family, & I noticed Dad's nose was all crusted over with dried blood. And the floor was littered with bloody Kleenex and handkerchiefs. Other than that, Dad's face is really red (like Rosacea). It looks like he has broken blood vessels all over his cheek area. Ericka (a nurse) says it is from the steroids they give him during chemo. And, I've noticed also Dad's eyes look dried out like there is a film over them. They seem to bug out a little. Ericka says that is also from the steroids. So, there is all the Dad news for those of us who don't get to see him every day.

HAPPY FIRST BIRTHDAY MAELIE!!!!

PET SCAN TODAY

Jon had the PET scan at 7:00am this morning. Although we are tempted to have the results faxed to my office we are awaiting our appointment with Dr. Chue on Tuesday. It is his policy to only review scan results in person and we want to respect the "Chue Master"

Although Jon remains tired and his stomach still hurts he is in excellent spirits with the possibility of being at the end of this road. We are both optimistic about the results of the scan and all of our future plans. His first goal is, of course, to go backpacking. He's had a lot of neuropathy in his hands and feet this month (another chemo side effect) and needs to get the swelling down so he can put on his hiking boots! He worked a few hours today (ok, really he slept in the truck while Kyle did most of the work) and he's home napping right now in hopes of meeting Staci, Octavio, Kelsey, and myself at the Mariners game tonight.

Tomorrow is a family barbq for everyone to meet Stacis' beau, Octavio. We have enjoyed our time with both of them and they are graciously creating a Mexican Feast for the family. I would have to say that Staci is happier than I have ever seen her!

A New Day

Jon had a good night, no fever and slept soundly. He is feeling good today, off to work, as ornery and obnoxious as ever.

PET scan Friday, results Tuesday the 26th

Good News/Bad News

The bad news is Jon had another reaction to his chemo. Similar to last time with fever and chills but much more controlled with the supervision of the doctors and nurses at SCTWC. I am monitoring his temperature tonight which has returned to normal. They are never sure if it is an allergic reaction or an infection so as a precaution they gave him an IV antibiotic and a prescription of levoquin. He is doing well and just a little loopy from the drugs. If anything happens tonight I will take him to Auburn General Hopsital, otherwise we will check in with SCTWC in the morning.

The good news is Dr. Chue agreed to ending his intravenous chemo today and has ordered the PET scan. We are to call the hospital to schedule it tomorrow (I'm hoping for a Thursday appointment) and we will see Dr. Chue next Tuesday for the results. We are all feeling extremely optimistic about the PET scan results. I should have some definite news by early next week.

Keep all those prayers and positive thoughts coming!

Sleeping Beauty

It's been a long week for Jon...he went to bed Thursday afternoon and finally managed to make it to the couch in time for Levi's birthday Friday night. We had planned on dinner at Tokyo Steakhouse but opted for pizza from The Rock and a birthday celebration at our house. He thought he'd make it to Maelies first birthday party today but used up all of his energy eating breakfast :(. We are shooting for church in the morning and then having everyone over to barbq for Father's Day. Elizabeth will be home tomorrow, Staci and Octavio on Wednesday.

I am grateful he is only tired and not sick. The PET scan is being scheduled this week. I keep hoping we show up at chemo on Tuesday and they say "24 chemos are plenty,he's too worn out, lets just do the scans and call it good." Either way, its all within our grasp...even if he sleeps until the 26th.

Thanks to everyone for you continued prayers and support!

TWO WEEKS TO GO

Jon received a fairly good spanking from the physicians assistant at chemo yesterday. He does promise to do the abdominal x-rays and take Zantac twice a day for the next week (he's had terrible heartburn all week). I think he just likes all of this female attention so he acts up on purpose!

We have a little more information on the Interferon. Apparently most of the patients have little or no side effects and it does and excellent job of boosting the immune system. After the PET scan Jon can expect to be on Tarceva for one week to one month and Interferon for 3 months (providing the tumors have continued to shrink as expected). At the end of the three months they will rescan him to insure that the cancer has not grown or returned. If it has he will need more intravenous chemo, if not he will continue on the Interferon for a year. They feel that it is realistic for Jon to expect to guide in Alaska this October, however we will have to await all of these results.

Keep up the prayers and positive thoughts. Although he is tired and his stomach hurts, he continues to amaze all the docs with his progress

The Old Jon Is Back

True to form, Jon felt so much better today he cancelled his abdominal x-ray.

What can I say??? The man's going to live or die on his terms. I am confident that his stubbornness will keep him alive for a very long time.

He assures me that he will have it done immediately should his symptoms return. I will just let him explain it all to the Chue Master next Tuesday.

Things are Looking Up

Jon's doing pretty well today. He has some difficulty sleeping because of the steroids so he's a little tired. He and Howard (Father-in-law #1) worked at one of his foreclosure houses together this morning and then met me for lunch. They are quite a colorful pair!

THREE MORE CHEMOS TO GO!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

We've researched a bit more on the Interferon and found that just like the chemo, Dr Chue prescribes it at a lower dose with an increased frequency. Although it makes you tired it's tolerated much better that way. Aaron (the other pancreatic cancer cure) is still on it after a year and is riding the Seattle to Portand Bike ride next month. He has also returned to work and is living what appears to be an cancer-free, normal life.

Please send extra prayers and positive thoughts tomorrow. Thursday is always Jons worst day after chemo and he could use the extra boost. He is also having the abdominal x-ray series in the afternoon and we are expecting a positive result.

I Knew He Was Full of S#%!

This has probably been Jon's worst week since he got out of the hospital. He went to bed on Thursday and stayed there until Monday morning. He has been exhausted and experiencing abdominal pain which has caused some concern. Today he is feeling much better after taking a special "Maryjane Voodoo Cure" designed to clean-out the liver, gall bladder, and colon.

We are back at chemotherapy today. All of the doctors have come in to evaluate Jon and have concluded that his abdominal pain is some type of gastrointestinal irritation or blockage and not tumor related. Just to be sure he is having an ultrasound and x-ray this week. If any problems persist Dr. Chue will move up the PET scan/CT scan. His red count and white counts are excellent but his alkaline phosphotase is slightly elevated (also GI related). He has no pain today and his energy level is back to normal on the "cancer scale". We are looking forward to a better week!

Yes everyone, I really did say Tarceva.

Jon feels strongly that his pneumonia was caused by infection, not the Tarceva, but he has promised to discontinue it immediately if he has any adverse side effects. Dr Chue agrees.

CHEMO NUMBER TWENTY-TWO

It's hard to believe that this man has endured 22 intravenous chemos! His bloodwork today was actually in the normal range in red cells, white cells, and platelets. He asks..."then why do I feel like shit??" The answer..."this is chemotherapy".

It was a pretty good weekend. Jon and Kelsey camped and jeeped with Levi but Jon was ready to head home with fatigue and swollen feet by the time I arrived on Saturday. We spent Memorial Day in Seattle at the Sculpture Park and Folk Life Festival. Jon was beat by the end of the day but is back in excellent spirits by Tuesday morning.

His message for today...."Keep those prayers coming"

Four more chemos to go until the PET scan. Probably onto Tarceva and Interferon in July. Tarceva is oral chemo, Interferon is a subdermal immune booster. Both are self-administered and don't require one day a week hooked up to an IV bag.

A Surprisingly Good Week

All in all this has been a pretty good week. Jon continues the dance of the red and white blood cells...one day they're up the next they're down. This week it was good red cells, bad white cells. He laughed when he realized he had convinced himself that he was going to feel bad for the next six weeks because his red count was down last week, only to find it was back in the normal range this Tuesday. Amazing what your mind can do!

Jon, Levi, and Kelsey left for Nachees yesterday for a long weekend of camping and jeeping. Levi calls this the "Two best days of the year...the First Jeep Weekend of Summer and Christmas morning." His enthusiasm is contagious! I will be meeting them tomorrow morning. I hear a rumor that Chinook pass is littered with "Dr. Pooh" signs directing me to their campsite :)