ELIZABETH'S BLOG

Since I have been home for Christmas Jon has not seemed to have changed at all!
Good Sign??
We will see...

Staying Strong

Dr. Chu telephoned today to tell me he spoke to the UW and they ruled out testicular cancer. We are proceeding with treatment for pancreatic cancer on Wednesday at the Seattle Cancer and Wellness Center. Check out their website: Seattlecancerwellness.com and the story of Aaron Barrett, pancreatic cancer survivor. Jon and I are looking forward to meeting him soon. Jon's next chemo will consist of Gemzar and Taxil. He has already been using the Gemzar which has been somewhat effective, but Dr. Chu is adding the Taxil for optimum results.
With the lower dose, more frequently they expect little or no side effects from the chemo.

We also received the results of Jon's recent liver function tests (alkaline phosphotase) which has been reduced by 22 points since he started chemo. He has 60 points to go until he is in the normal range, but it is a sign that what we are doing is working to some extent.

He is home working out right now as I finish up a day at the office. Keep him in your thoughts and prayers-he is staying strong!

A Better Plan

Today we saw Dr. Chu at Seattle Cancer and Wellness Center. Our visit lasted 3 hours, most of which was spent with Dr. Chu diagramming cancer and chemotherapy to the extent you would expect in medical school. He is a remarkable man who is passionate about his medicine. His first objective is to obtain the results of the second opinion biopsy for the University of Washington. He felt that there was a small possibility that the primary cancer could be testicular rather than pancreatic which would be great since testicular's cure rate is 98% and pancreatic's is not. Secondly, he is one of the few oncologists that has actually cured pancreatic cancer. The chemotherapy he uses is all the standard drugs but combined for effectiveness in not only shrinking the cancer but eliminating the blood supply to the cancer cells. His protocols utilize lower doses, more frequently which also minimizes the side effects from chemo. We were impressed with his knowledge, passion, and dedication. He also reiterated that if chemo could shrink the cancer to a manageable number and size Jon could have surgery to remove it completely. He is to call us with all the results and details tomorrow.

Family Portrait

So They Say He's Stable????

Today we saw Dr. Liao (original oncologist). Although the CT scan showed no change since the original one in November he remains optimistic about Jon's current course of treatment. He pointed out that it was nearly one month from the original CT to the first chemo and it is very possible that the tumors had grown in size in that time period. He felt the fact that the cancer had not spread or become larger was positive and in his mind believed that they really had indeed shrunk relative to their original size. We were a bit surprised at his logic but figured we would take any encouragement he wants to offer. Jon's blood work was again excellent. He looks great, has gained 5 pounds since recovering from his last chemo (that still leaves him at a net loss of 10 pounds), and is back to working out every day. He is scheduled for two more chemos in January and another CT at the end of the month. In the meantime, we have a second opinion in Seattle on Thursday and still await the second opinion biopsy from the University of Washington which we expect shortly after New Years. All in all, Dr. Liao proclaimed Jon's condition "stable" at this time. Probably the best prognosis we can currently expect.

Interestingly, Dr. Liao told us today that he had been an Oncologist and Professor at the teaching hospital in Texas where Lance Armstrong had treated for testicular cancer. For some reason we take that as a positive sign!

Tomorrow is Kelsey's birthday. Elizabeth is taking him to spend the day in Seattle (Kelsey's favorite thing to do) as I have to go back to work. We will all celebrate his 15th birthday at Indochine in Tacoma tomorrow night. Jon and I have been shopping for an old Monte Carlo to teach him to drive. It was Staci and Levi's first car and we thought it would be fun to keep it in the family! We found one for $400 at a house in Sumner...just waiting to see if it actually runs :)

A Merry Christmas Eve

It is Christmas Eve afternoon. Elizabeth and I are wrapping the last of the stocking stuffers while Jon, Levi, and Kelsey are at the Black Diamond Range trying out Jon's new shotgun. We are planning on church at St. James Cathedral and dinner at Toulios in Seattle tonight. A little different than our usual Christmas Eve but we are open to trying all kinds of new things this year. Staci is back in California...we already miss her and are planning her next trip to Washington in January.

Jon looks and feels the best he has in months. He hiked Mt. Peak yesterday and had his first work-out with weights today. Although he is not up to his standard performance I am pleased to see him back in the gym and building his strength. We discovered this past week that he is severely deficient in Vitamin D and just added a liquid supplement to his regime. He has very little nausea, his energy is increasing, and the swelling and pain around his liver has diminished.

We want to wish all of you a Merry Christmas surrounded by the friends and family that you love. Be sure to take the time to appreciate every moment with them!

Laughing, Loving, & Living

This is Staci (signing off...I fly home in a few hours). I've had a great visit & am really sad to go. Here are some highlights.

1. I have a pretty bad cold. Kelsey had it but seems to be better now. Lorri is starting to get it. But whose immune system is so stellar that he doesn't even have a sniffle? You guessed it - Big Jon.

2. We have started calling Dad's foods that contain anticarcinogenic gravel, twigs, & moss "cancer" foods. Such as, yesterday Lorri made Dad "cancer cookies" (they had kamut flour & applesauce - they looked the same when they came out of the oven as when they went in.) We've also had "cancer pancakes" several times.

3. Kelsey & I went to downtown Seattle the other day & spotted a t-shirt at Pike Place Market that said, "THE LIVER IS EVIL. IT MUST BE DESTROYED." Of course, we had to buy it...if only for the sheer random-ness of it. We're not sure what it means, but as I told Dad, "The shirt came in your size - Cancer Small."

4. Speaking of that, Dad has lost 15 pounds so far :-( but today was the first day he has put a pound back on! YEA!

So to all of you who can't be here with my Dad while he weathers this storm (like myself), who rely on the blog and phone calls to stay informed - I want to tell you they are doing OK here. They are talking about EVERYTHING (from remarrying to funeral preparation to poop that looks like peanut butter). They are laughing, loving, & living.

This is my Pagoda haha

Hey guys and gals, It's Kelsey, today has been pretty good Jon went to acupuncture and is now eating some delicious brownish greenish cookies and is washing it down with some nice pumpkin butter. So he seems to be in pretty good spirits. Elizabeth is coming home today and we are all going for a family picture, and then getting Pizza =] I'm pumped.

PLAN B

Jon had his CT scan yesterday and we received the results. So far there has been no further metastasis(spreading) of the cancer, however the tumors in the liver have not diminished in number or size. The pancrease still looks completely normal. We are pleased that in the six weeks since the original CT there is no more metastasis, however, we are disappointed that the chemotherapy was not effective in shrinking the tumors. So here is Plan B...We have requested a second pathology reading of the biopsy. Since the chemo was ineffective we want to make sure that the pancrease is definitely the primary site. Next we have an appointment with Dr. Chu at the Seattle Cancer and Wellness Center who is having excellent results with his new chemo cocktail treating pancreatic cancer. We also are sending Jon's records to Seattle Cancer Care Alliance (Fred Hutchison Cancer Reasearch and University of Washington Medical Center combined). They are currently conducting a study where an individuals cancer is grown in a laboratory and antibodies are made that fight it. Your own antibodies are then injected into your body that can fight your specific cancer. Our third option is to take the cells from Jon's biopsy and grow them in the lab and test specific chemotherapy agents to determine which chemo is most effective. This procedure is also performed at the Seattle Cancer and Wellness Center. Since chemo is so hard on the body we want to make sure that the next series is the most effective agent we can find. In the meantime we will continue all of the supplements, acupuncture, etc. Jon and I both attribute the lack of metastasis to the natural methods we've been utilizing since the chemo did not shrink the existing tumors. Lastly, we have a follow up appointment with Dr. Liao, our original oncologist, but doubt we will continue under his care. Looks like all our further treatment will be with the specialists in Seattle.

Keep the prayers and positive thoughts coming! Thank you for all of your love and support.

No Stone Unturned

(Written by Staci) Before coming to visit, my dad said, "This is going to be fun. We can spend the whole day together." I said, "What do you do all day...besides nap?" He answered, "Well, I go to the doctor a lot." And that's exactly what we did today.

After some home-made anticarcinogenic pancakes (blue & pasty), we went to Dr. Mary Jane Mack's office. She is a doctor of "designed clinical nutrition." For an hour, Dad sat under "the lights." These devices are not lights at all but black, plastic boxes that give off some high frequency, quantum physics joo-joo that nukes cancer. Dad tells me that cancer exists at a low energy frequency, and "the lights" bring up the frequency too high for cancer to survive.

Then we went to acupuncture with Candace Burnikel. Dad told me Candace was the first person to tell him something was wrong with his liver (that acupuncture could not fix). And, for the record, Dad promised to buy Candace a new office if he survives!

The rest of the day Dad was on the phone with friends and family, one after another expressing support, giving information on experimental cancer research, providing referrals to estate planning lawyers...Calls came in from around the globe!

And, as if the day wasn't packed with enough cancer fighting, we stopped at the health food store on the way home for a "Liveracci" smoothie made of beets, carrots, and garlic. (As a vegetarian, even I have to say that sounds a bit too much like mulch.) But that is what this fight requires.

Never in my life have I seen such single-minded dedication and focus, not just on the physical but emotional and spiritual battlefields as well. As I type this, Dad & Lorri are sitting at the counter with pill bottles and notes spread everywhere - looking over doctor notes, discussing doses, re-analyzing strategies. No matter what happens, I will know that no stone, no tiny pebble for that matter, was left unturned.

Tomorrow is the big CT Scan that will tell us if the Chemo is working.

Here is my store.

I walked outside to warm my truck after gorging myself with food on Thanksgiving with all my loving family. my Dad walked up to me and told me to turn my truck off we need to talk. I sat in a chair behind a closed door staring at my dad. Something was different this time I did'nt do anything wrong I wondered. He looked at me and sayed you must be strong, not for me, not for yourself but for your family. I have cancer. He looked at me with all the strength I needed for what lay ahead. I asked as many questions as I knew about cancer, which was not very many. Growing older in life I never thought of the equation of having a child out of wed lock. But I am making it happen. I never thought my father would be diagnosed with cancer, but it happened. God will only challenge those who can handle his challenges. My family and my Dad are so strong cancer better watch out.

For 4 days I worked about 12 hours a day in the cold snow thinking of the sollution for my Dads challenge. STRENGTH Thats it. After crying to myself everytime I was alone I came to realize, hey this is my Dad. The man I have walked the blistery beaches of Alaska with. Tought me how to skin an animal and keep my knifes sharp and true. We sat under a tree miles up in the cascades Bobcat hunting by are selfs looking for stupid hound dogs chasing a cat for at least 6 hours in 5 feet of snow. I was never afraid I had my Dad. My Dad told me one time when I say jump you dont say how high you say when the f#@! can I come down. If there is a stronger man on this planet bring him on because my Dad is not afraid. In short if it can be done he will do it. And yes it can be done. I love my Dad very much. By Levi Nichols

Nuclear Gas (Twice as Toxic)

Hi everyone - it's Staci writing. I'm typing this at Aunt Tonya's because we still don't have power (day #4)!

Anyone that knows my dad knows that he is quite a "flatulent" individual. Now that his body is processing chemo, we are experiencing nuclear farts. A whole new level of air pollution! Last night as Dad was trying to light a propane heater for Lorri's office Christmas party, he let one go, cleared the room, and Kelsey & I actually feared he may burn the house down...Good memories I'll cherish :-P

Other than that, Dad has been a bit sore and tender in his midsection. He is actually having physical pain in the area of his cancer. (I had to hug him softly.) His energy is good. You'd hardly even know he was sick.

On one final note, Lorri & I have discovered that our daily affirmations for my dad are the same: "Chemo is shrinking Dad's tumors" and "Chemo is killing Dad's cancer." We visualize the tumors getting smaller and happy reactions after the next CT scan.

The calm after the storn

We all survived the windstorn without any damage. It actually was minimally windy at our home, but we still managed to lose power and don't expect it back for a few days. Jon felt well enough to build us a roaring fire and light up the house with lanterns(or maybe he felt like crap, but did it anyhow-he is that sort of guy). The night of the storm we all sat around the fire while Kelsey entertained us with his guitar and piano...we were thinking we should shut the power off more often.

Our plan for the rest of the weekend is to enjoy our friends and family in celebration of Christmas. The CT scan is on the 19th so keep sending your tumor shrinking thoughts and prayers. I am grateful there is no more chemo until after the holidays and Jon can enjoy this very special time with all the people he loves.

Many Great Doctors on Our Team!

Yeah-Staci's Here! She arrived last night and is off this morning to spend the day "getting dirty and eating junk food" with Levi. Kelsey tried to convince us that he should go along, too, but since he already missed most of October with his sinus surgery he had to skip all of the fun and go to school. Kristi gets in from Japan this afternoon so we are also looking forward to seeing her, Granny, and Cody for dinner tonight.

Jon is still sleeping. This second chemo seemed to knock him out much more than the first. He says that the pain in his liver is diminishing so we are hoping that means the tumors are shrinking. I had the opportunity to discuss Jon's case with a leading oncologist from Swedish Hospital last night (Dr. Henry Kaplan). He and Dr. Reilly (our naturopath) both suggested we ask for a second opinion on the biopsy since there remains some question as to whether or not the primary site is the pancreas. That could potentially impact the specific kind of chemotherapy he is receiving and improve his outcome. He felt that we were on a reasonable course at the present and should check back with him after Jon's CT on the 19th. All of the doctors agree that if the tumors are shrinking we should stay on the same course until they are small enough to eliminate with radiofrequency ablation. That procedure is available at the University of Washington Medical Center. There is a Dr. Chu working with Dr. Reilly at the Seattle Cancer and Wellness Center who is conducting a study on a new combination of old chemotherapy drugs for pancreatic cancer. To date he has a 90% success rate over a two year period, not a very long study but unbelievable outcomes. His treatment also combines all the natural methods we have already incorporated. He has a patient that was brought to him on a stretcher two years ago and is currently off chemo, lifting weights, and cycling. His name is Aaron if anyone wants to check out the website (google:seattle cancer and wellness center).

The doctors we have met on this journey have been absolutely outstanding. It takes a very unique person to specialize in oncology. Dr. Kaplan starts his rounds at Swedish at 5:30 in the morning, works all day, and still makes time to call me at 9pm because our friend Maggie asked him, we are not even his patient. That is the kind of dedication that continues to give me hope. In addition, this doctor is an avid backpacker. When we ended our call he told me his favorite place to backpack is the Wind River in Wyoming and said "let get Jon well and I'll tell you where the trailhead is".

Jon's urologist, Dr. Philbrick, has also gone above and beyond the call of duty. Although Jon's condition is unrelated to his treatment, he calls regularly to check on Jon's progress and offers any advice and support that he can. Another amazing individual! Not to mention the radiologist from CDI and Dr. Liao who spent their Thanksgiving Eve going over Jon's case with me. We couldn't ask for a better team of dedicated doctors!

Staci make take over the blog for the next few days, so look forward to the Nichols Family from another perspective. Elizabeth says we are already like the reality TV show "Hogan Knows Best" :)

So you think you're tough, Lance?

Jon says Lance Armstrong is a pussy. Anybody can beat testicular cancer...it takes a Real Man to beat pancreatic cancer :)

You gotta take the good with the bad

A pretty tough day for Jon. Extreme fatigue and moderate nausea. It is hard to imagine anyone as strong as he is feeling this way, but I know that this is what it will take to get him through it.

Our visit with Dr. Reilly went really well. He suggested to Jon that we use a rifle and not a shot gun in our supplement approach. I had to laugh, boy did he have Jon pegged! He fine-tuned our program and offered some new options we had not considered. We see him again in 6 weeks.

Since his diagnosis Jon has eliminated all sweets and processed sugars. Even though he is a "health nut" he has always succumbed to his sweet tooth. One of Dr. Reilly's recommendations was to elimate sugar except for the day of chemo. Chemotherapy affects active cancer cells and they THRIVE on sugar. So Jon gets to "junk out" the morning of chemo on any sweets he wants! That made him smile. His next chemo is December 28, still in time for Christmas goodies!

Second Chemo

Jon had his second chemo yesterday. It is a long and tedious process. He was there from 11:30 in the morning until 7:30 at night. You can all imagine how much he enjoys sitting on his butt while the nurses pump him full of drugs! Levi, Maelie, Kelsey, and his cellphone kept him some company throughout the day. His pre-chemo blood work was excellent and I continue to be amazed at how well his body is tolerating chemo. For one of the medications the nurse had to put on a Hazmatt suite before she adminsters it...not a real confidence builder!!!

He is a little tired and nauseated this morning. His plan is to rest up for the next few days so that he is good for all of our holiday festivities over the weekend. We have our appointment with the Naturopathic Cancer Specialist, Dr. Paul Reilly this afternoon and then with the Nutritionist, Mary Jane Mack on Thursday.
We are currently researching immunotherapy treatment and have found some promising information on Interleukin4 for pancreatic cancer. If anyone has any info in that regard please email it to me (LORRIO@AOL.COM)

Staci rearranged he flight and will be here this Wednesday through December 22nd. We are all really excited to have her with us for the next week. Elizabeth will be home on the 21st so we get one day with all of us together for the holidays!

Keep Jon in your thoughts and prayers. As always, we appreciated your love and support.

An excellent weekend

We had a great weekend with all of our friends and family entertaining us. We better all be careful because Jon is getting completely spoiled and will be incorrigable when he is well!

Thank you to the Mauers, Pitts, Browns, Whalens, and Mortells for wonderful dinners and friendship. With all of your delicous cooking Jon actually gained a pound over the weekend. He initially lost 10 and it is extemely important for him to keep his weight up so we are moving in the right direction.

Today is Jon's second chemo. Levi and Maelie are taking him to keep him company. He has to sit still and have it delivered intavenously for 6 hours-no small task for someone who is used to being so active. Kelsey gave him an early Christmas present last night, a portable DVD player. I gave him a bunch of funny movies to keep his laughing (at Koreen and Dianes insistance!) Jon is convinced he will have no side effects from chemo this time around and he has felt good the entire week on what he calls "the cancer scale".

Please keep all the calls, emails, prayers, and positive affirmations coming!!

Another good day

Today marks the fifth good day in a row...a record since the biopsy. That means good energy, less pain, and minimal nausea. We are grateful for every day!

Anyone who knows me will remember that I am an avid cyclist and have been a Lance Armstrong fan since before his first Tour de France victory. Last year for my birthday Jon gave me a large Lance poster with a picture of each of his Tour victories. Of course, I bought Jon Lance's fist book the day he was diagnosed. Yesterday I was working out in our weight room and saw the poster on the wall behind our bench press. It's now is up over our bed to remind us daily that anything is possible.

Should I believe my husband?

Ok, all of you are telling me that to cure cancer you must have prayer, a positive attitude, and laughter. Jon, however, tells me that the only sure cure is frequent sex. I just don't know who to believe?????

More good news

I forgot two things the oncologist said yesterday. First, I have been wondering if the fact that the cancer is no longer evident in his pancrease is good because it's not there or bad because it's there and we can't see it. Turns out they see it as a good sign that the cancer started in the cells of the outer pancreas and only minimally effected pancreatic fuction. All his pancreatic tests are totally normal now. Of course the fact that it spread to the liver so quickly is problematic but it does limit the number of organs that have been affected by the cancer.

Number two, the oncologist says that if the next chemo goes well Jon can expect to start working out again next month. His attitude has been amazing considering we know how much he loves to workout and has been unable to do so since his liver biopsy.

Today we saw the oncologist (Dr. Liao) for a follow up appointment. Jon had bloodwork to measure his white cell, red cell count,etc. Everything was normal which is an excellent sign of both Jon's state of health and the fact that all of the supplements he's taking to combat the side effects of chemo are working. It also means that his immune system is intact and he is free to celebrate the holidays with all of his friends and family. He has a second chemo on the 11th and then a follow up CT scan on the 19th. We see Dr. Liao on the 26th and at that time we will know if the chemo is doing its job. If the chemo can shrink the tumors in the liver to a reasonable size and number he can then have "radiofrequency ablation" where a surgeon burns off the rest of the tumors and he can stop chemo. He is also doing acupuncture, naturopathic medicine, and nutritional support. He will tell you that being a cancer patient is a full time job.

True to form, as we were leaving the doctors office Jon stood up and opened the door just the tiniest crack. He turned around, looked the doctor in the eye and said "I don't need you to cure me, just open the door for me this much and I will f!#%* run through it. Dr. Liao laughed and said "Jon, I believe that you will!" So do I :)

He left for Moses Lake today with Rex for an overnight duck hunt...will be back tomorrow night in time to watch Benton wrestle at Todd Beamer High.

Thank you for all of your phone calls, emails, support, and prayers!

A better day

Jon had a great day yesterday after returning home from his trip to Staci's. Unfortunatly he experienced the worst effects of his chemo during that trip (sorry about your truck, Stac :(). He didn't have all of supplements and devices to keep him well in California and is optimistic that the side effects will be minimal in the future. His next chemo should be within the next two weeks. He is in excellent spirits.

The story begins

Here is how this whole thing started...over the past year Jon has noticed a decline in his workouts (you all know he has tracked them since he was 12 years old!). He also has had a mild discomfort under his right rib cage. Of course, he was kicked in the rib and knocked unconscious during a Taekwondo tournament last year so we didn't think all that much of it. In October his energy level declined and he began to feel nauseous. Before we left for our Riggins, Idaho hunting trip he saw our family doctor (Dr. Day). She thought it was a gall bladder problem but thankfully ordered some liver function tests. While we were in Idaho Jon began to take some liver and gall bladder cleansing herbs. By the time we got home he was feeling great. The doctor called and told us his liver enzymes were abnormal and she wanted an ultrasound of his liver. Jon, of course, thought it was unecessary but begrudgingly agreed to go along with her. Immediately after the ultrasound Dr. Day called him into her office and told him they had found metastatic cancer in the liver (cancer that had spread from somewhere else in the body). He, of course, told me everything was fine and that they thought he had gall stones. Knowing Jon and having women's intuition I badgered him for the truth. A few days later he showed me the utrasound report. Since then he has had a CT scan, liver biopsy, MRI, and PET scan. The oncologist believes that the cancer started in his pancreas and spread to his liver and one spot in his lung. None of the test show the cancer actually in the pancreas but there are two lymph nodes outside the pancreas that have cancer. He had his first chemotherapy on November 28th which he tolerated fairly well. He visited Staci Nov 30-Dec 2 and had some side effects (fatigue, nausea, and vomitting) on his return home. His next visit to the oncologist is December 5 and he will have another chemo in 1-2 weeks. The oncolgist is optimistic that Jon will respond well to the chemo and was anxious to get started as pancreatic cancer is very aggresive. He will have a second CT scan in January to determine the efficacy of the chemotherapy. We have researched all the natural supplements that fight cancer and support the body during chemo and he is on a good program. He is receiving acupuncture. We also have an appointment on December 12 with a naturopath who specializes in cancer treatment. Our plan is to hit it with everything we've got!!