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

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

Dr Chue, Dr Chue, Dr Chue!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Today was Jon's visit with Dr. Chen who is our other option for an oncologist at SCTWC while Dr. Chue is on leave. This appointment went much better than Monday's visit with Dr. Cunningham. Dr. Chen is definitely in closer communication and practice style with Dr. Chue. After reviewing Jon's scans he agreed that a more aggressive approach was in order and Jon should proceed with intravenous chemo asap. He planned on calling Dr. Chue tonight to perfect the next "cocktail" but it will be along the lines of the oxyplatin/5FU/taxol regime. Dr. Chen told Jon he wanted to make sure that the treatment didn't kill him instead of the cancer. Jon responded that he'd rather "go down fighting."

The schedule will be arterial mapping on Dec 2, most likely Y90 embolization the 4th and the first IV chemo Dec 9. He will have 12 metronomic chemotherapies and a second embolization in early January. It's going to be a tough road ahead. As I witness Jon going through this I have come to understand why some people give up but that is still not either of our styles. We don't always agree on treatment protocols (and lots of other things!) but I have some sense of peace in knowing that we both feel strongly about moving forward with these therapies. I guess our mutual stubbornness, persistence and tenacity are some of the things that bond us together.

It's strange to think about 2 years ago on Thanksgiving Eve when I spent the evening reviewing MRIs, CT scans and treatment plans with the radiologists and oncologist. The next day we had the family over to celebrate the holiday and Jon asked me not to tell them the news until we had more information. It felt nearly impossible to get through that day. So much has happened in the past two years and I am thankful Jon has had the opportunity to watch his children marry and have two beautiful grandchildren. Tomorrow we celebrate with my Mom and Dad who are still visiting from Pennsylvania (they are an entire blessing all to themselves!), Elizabeth, Kelsey, Levi, Ericka, Maelie and Wyatt. The family keeps growing and life continues to move on.

Thank you to everyone for all of your positive thoughts, words, and prayers.

We had our appointment with Dr. Cunnigham and were completely unimpressed. He had not been through Jon's file nor had even thoroughly read the results of the PET/CT/MRI. All he knew was that Jon's condition had worsened at that he was going to move forward with the Y90 embolization. He recommended an oral chemotherapy drug that had some synergistic effect with radiation which only offered a 10% improvement at best. Not at all what Dr. Chue had in mind.

When we saw Dr. Gosswami on Friday we only focused on the results of the liver MRI/Pet and the outcome of the chemoembolizaitons. During our visit with Dr. Cunningham I was able to read all three radiological reports and came away with the entire picture. The cancer persists in the right lobe of the liver and has spread more invasively into the left lobe, there are five new spots in the lungs and a new mass adjacent to the pancreas. The two abdominal lymph nodes have increased in both size and activity. Not a good report at all and definitely not amenable to the oral chemo Dr. Cunningham had recommended. By the time we were driving home I was absolutely livid. Dr. Chue had wanted Jon to return to the oxyplatin/5FU/taxol regime or possibly try methyltrexate. Dr Cunningham hadn't bothered to even consult Dr. Chue. After discussing the visit with Jon we decided to call the nursing staff and request a consult with Dr. Chue. Jon called this morning and has an appointment set up with Dr. Chen tomorrow who will act as the conduit to Dr. Chue. This cancer has become much more aggressive in the past few months and we both believe that Dr. Chue would choose a different approach. He is also schedule for his arterial mapping at the UW on Dec 2 to prepare him for the Y90 embolization that should take place on the 4th or the 9th, any chemo will be scheduled around the surgeries. Dr Goswami tells us that the Y90 is much more tolerable then the chemoembolization since there are no chemotherapy drugs involved.

Jon is determined to fight this battle with everything he's got. I will continue to support and facilitate whatever path he chooses.

The results of Jon's scans were disappointing to say the least. Not only had there been no improvement in the liver as a result of the three chemoembolizations but the disease has actually progressed in the left lobe. Dr Gosswami was visibly surprised and frustrated that what he thought had been an outstanding procedure had no effect. He is recommending that Jon proceed with the Y90 (radioactive isotopes) as we had originally discussed and also begin systemic chemo to address the tumor in his lung as well as the two lymph nodes in his abdomen that have now increased in size (they had been stable for the past two years). Dr Chue is still on sabbatical and we will move forward with Dr Cunningham who is treating patients in Dr. Chue's absence. I expect he will have his first chemotherapy next week and the Y90 embolization sometime in December.

Jon was stoic through the entire visit. He only commented that he "didn't really want to go back to chemotherapy, it sucks."

I am battening down the hatches for the upcoming storm.

Tomorrow is the big day with Jon's PET scan and MRI. The PET scan will be of his entire body and the MRI will be the liver. We are most concerned about the spot in his right lung and the efficacy of the chemoembolizations on the liver. We see Dr. Gosswami on Friday to get the results. Dr. Chue is on leave and Jon has not yet selected his "stand-in" oncologist. I think he is hoping Dr. Gosswami can just take over but that is unlikely since he specializes in intervention oncology. I do have a call in to Dr. Chue regarding his article and am hoping to be also able to discuss Jon's case with him when I he calls back.

My parents have been visiting from Pennsylvannia and we are having an excellent time. It is so nice being around optimistic, loving people! My Dad will be escorting Jon tomorrow for the scans and I will go for the results on Friday.

Please keep the postive thought and prayers coming for this week.

Here's some more info on Aaron Barrett, 4 year pancreatic cancer survivor. Just in case I didn't mention it, he rode his bike 175 miles in the Seattle to Portland Bicycle Event in July of 2008...

http://www.cancercenter.com/video/news-stories/seattle/full-focus

Dr. Chue likes to tease Jon that Aaron is "kicking his ass" :)

I sometimes just have to laugh at the irony of the cancer world...I think I have mentioned in my previous blogs that I have taken a temporary leave from being Jon's personal secretary, assistant and cancer advocate. This, of course, is only while he is feeling well and able to do these things for himself; it gives me a few moments of a normal life and an opportunity to take care of myself and catch up on my work and other responsibilities.

Jon did get his PET/MRI scheduled for the 19th, however I am disappointed that it took so long and that Dr. Chue will not be available to view the results. We did, however, meet with Dr. Chue last month and plot a course for the potential eventualities. So while Jon scheduled his radiological studies at the UW he queried them about the Photodynamic Therapy to treat his lungs. They came back (weeks later) saying that the procedure was not offered at the University of Washington or the Seattle Cancer Care Alliance. Much like every other specialist we have seen they did not offer any alternatives for treatments or location. SCTWC told us that their Tulsa location does the procedure but not in Seattle. I did find a place in St Louis that did it but wasn't impressed with the idea of traveling for treatment. So tonight, I refined my search and, low and behold, the treatment is offered at two major hospitals here in Seattle (Swedish and Virginia Mason) and a Cancer Center in Portland, Oregon. Geez...do you think maybe someone might know that if they work in the cancer field every day??? Now the challenge will be our usual, convincing the doctors that Jon is a worthy candidate for the procedure. Time to start sending his weight-lifting pictures again!

Dr Chues Article

We are working to publish Dr. Chue's article while he is taking his leave of absence. For beginners we thought we would post it on the blog and also on a website his other patients have created to share cancer information with other patients. I am still researching where the article has already been submitted and working on reformatting it for specific publications. Please feel free to share the information with anyone who might find it useful or be open to publication



There Is Still Hope: A Patient With Metastatic Pancreatic Carcinoma Four Years After Diagnosis

To the Editor:
The article by Kulke et al.l on second-line therapy with capecitabine and erlotinib as well as the letter to the editor by Boeck and Heinemann2 can serve to be an encouragement to those with the devastating disease of advanced stage pancreatic cancer, where median survival for metastatic disease is on the order of three to six months. Here we would like to report a case to give further hope to those suffering from this disease, and hope and encouragement to those physicians who treat such patients. Patient A.B. is a 38-year-old gentleman who presented with abdominal discomfort and complaints of food not going down. A CT scan of the abdomen on 8/26/04 showed a 9 x 8 cm soft tissue mass at the lesser sac and compressing the gastric body and contiguous with the pancreatic body, with a lesion in the left and right lobe of the liver consistent with metastatic disease. The patient underwent an exploratory laparotomy with biopsy of the pancreatic mass, cholecystectomy, and a Roux¬en-Y gastrojejunostomy as a palliative bypass. The pathology showed an adenocarcinoma, metastatic of unknown primary, most likely from a pancreatic carcinoma. The patient was treated with gemcitabine chemotherapy and capecitabine from 10/04 to 11/04, with significant side effects and evidence of disease progression. The patient was then switched to gemcitabine and docetaxel on 12/12/04. A CT scan on 1/10/05 showed further disease progression. Hospice was suggested. The patient then came to our clinic on 1/28/05, greatly debilitated, in a wheelchair with an ECOG score of 4, where he was told that there was no standard treatment after failing a gemcitabine-based regimen. However, he was offered a combination chemotherapy with weekly paclitaxel (60 mg/m2)/oxaliplatin (50 mg/m2)/leucovorin (40 mg)/5-FU (425 mg/m2)(POLF), which he started on 1/31/05. He required transportation by paramedics on a stretcher to go to the clinic for his treatment and back to his nursing home but he continued to insist on being treated despite the grim prognosis. The patient received four weeks of the POLF regimen before his chemotherapy had to be held because of low blood counts, at which time he received a dose of cetuximab, in the hope that this would also contribute to control of his disease. (At this point, it was felt that he would either succumb to his disease quickly, or would be a miracle surviving his disease, and therefore out of desperation it would be reasonable to try any scientifically based treatment.) He continued on the POLF chemotherapy with intermittent cetuximab with a CT scan on 4/26/05 showing a decrease in the patient's tumor in the liver, going from 10 cm to 5 em, and was continued on the chemotherapy with further decrease in the size of his lesion in the liver and continued decrease in the size of the lesion in the pancreas. He also underwent physical therapy, and continued to improve clinically. He went from being transported in a stretcher for the first four months of treatment which also included two hospitalizations, to being transported in a wheelchair, followed by a walker and a cane, and then simply walking by himself. He was continued for 52 weeks of treatment with the chemotherapy and intermittent cetuximab, and his case was presented to the Gastrointestinal Tumor Board at Swedish Hospital in Seattle on 3/28/06, where his pathology and scans were reviewed. Because of his unusually long survival, there was skepticism about his diagnosis of metastatic pancreatic adenocarcinoma but this was confirmed. The patient was originally considered for resection of the remaining lesion in the liver. However, after much deliberation it was felt that the patient was at too high a risk for significant morbidity and mortality given his previous surgery. He was then switched to paclitaxel/CPT¬ll/oxaliplatin given on a weekly basis from 5/9/06 with intermittent cetuximab until 8/28/06, and subsequently was treated with erlotinib and low dose interferon, paclitaxel and gemcitabine, and then again with paclitaxel/oxaliplatin/leucovorin/5-FU (POLF) from 10/15/07 to 2/4/08. His PET/CT scan on 2/5/08 showed only a small lesion in the pancreas and a 1.8 cm lesion in the central part of the liver but without evidence of hypermetabolic activity. However, a more recent PET/CT scan on 8/5/08 showed two hypermetabolic lesions in the tail of the pancreas measuring 2.8 x 1.3 cm and 1.0 x 1.0 cm.. The patient's case was represented to the Gastrointestinal Tumor Board at Swedish Hospital on 8/14/08, where again his pathology was reviewed by another pathologist, who again confirmed the diagnosis of adenocarcinoma of the pancreas but with a few cells staining positive for a neuroendocrine tumor. The recommendation of the Tumor Board was to rebiopsy the lesion to confirm the diagnosis of a metastatic pancreatic adenocarcinoma. The patient therefore underwent endoscopic ultrasound with a trans gastric biopsy of one of the lesions at the tail of the pancreas.
The pathology again revealed an adenocarcinoma with minimal staining for synaptophysin, confirming a diagnosis of a pancreatic adenocarcinoma and excluding a predominantly neuroendocrine differentiated neoplasm. The specimen was also sent for K-ras mutation analysis and was found to have an unmutated K-ras. The patient has restarted further treatment with paclitaxel/cisplatin/CPT -11 and cetuximab. The patient has done extremely well overall, now with an ECOG score of 0, has returned to work, and is over four years out from his diagnosis. He recently completed the Seattle to Portland (STP) bicycle marathon, a distance of 175 miles.
The rationale behind the treatment with a weekly "metronomic" dosing of POLF is that, although there is no standard chemotherapy beyond first-line chemotherapy with a gemcitabine-based regimen, both oxaliplatin and leucovorin/5-FU have shown activity in this disease3,4. A recently reported Phase III trial also supports the use of these agents5. A weekly dosing of pac lit axel may also have some activity6. "Metronomic dosing" of chemotherapy can result in fewer side effects, leading to better tolerability? In addition, this dosing of chemotherapy may have antiangiogenic properties due to its effects on endothelial cells8,9, especially with the drug paclitaxel10,11,12. This may result in better efficacy than "traditional" chemotherapy. Recent results of a weekly "metronomic" dose of paclitaxel have shown this to be more effective than the previous standard doses of this agent given every three weeks in the neoadjuvant13, adjuvant14 and metastatic 15 setting in breast cancer.

Even more recently, there has been shown to be the same benefit ovanan cancer . Improved efficacy of the weekly dosing of-compared to the previous standard doses, appeared to be due to the more steady dosing of treatrnent, the increased dose density, dose intensity and antiangiogenic properties of the metronomic dosing of this agent12. Studies with the antiangiogenic agent bevacizumab indicate that antiangiogenic agents may lower tumor interstitial pressure, which may increase chemotherapy delivery to the tumor bed and thus improve efficac/?,18. Weekly paclitaxel may therefore allow for increased efficacy ofthe other chemotherapy agents such as the oxaliplatin and 5-FU, by allowing for the agents to better reach the tumor and yet cause fewer side effects systemically since lower doses of chemotherapy are used. Some data with this POLF regimen for metastatic pancreatic adenocarcinoma have previously been reportedI9,20,21. A Phase II clinical trial with the POLF regimen is currently underway (clinicaltrials.gov, identifier # NCT00323583). We encourage participation in this clinical trial and would be happy to have anyone consider a Phase III clinical trial using this regimen or this concept.
Of interest is that the patient's pancreatic adenocarcinoma showed no K-ras mutation. Recent work in metastatic colon cancer indicates that colon cancers which have K-ras mutations have a poorer prognosis, and do not respond to cetuximab22,23. A recent trial looking at the addition of cetuximab to gemcitabine showed no survival benefit of cetuximab in the treatment of metastatic pancreatic carcinoma24. However, 90-95 percent of pancreatic adenocarcinomas have a mutated K_rai5,26,27, which may have resulted in these negative findings. It is therefore possible that cetuximab may have efficacy in the remaining 5-10 percent of pancreatic carcinomas that have wild¬type K-ras.
The patient has obviously done well and we hope that he will continue to do well over time. It is hoped that we will be able to make substantial progress in this devastating disease of pancreatic carcinoma with new innovative therapies, and with the help of such unrelenting patients as ours.
REFERENCES:
1. Kulke MH, Blaszkowsky LS, Ryan DR, et al: Capecitabine plus erlotinib in gemcitabine-refractory advanced pancreatic cancer. J CUn OncoI25:4787-4792, 2007.
Continued
There Is Still Hope: A Patient With Metastatic Pancreatic Carcinoma Four Years After Diagnosis
2. Boeck S, Heinemann V: Second-Line Therapy in Gemcitabine-Pretreated Patients With Advanced Pancreatic Cancer, J CUn OncoI26:1178-1179, 2008.
3. DeVita V, Hellman S, Rosenberg S: Cancer: Principles & Practice of Oncology (6th ed). Cancers of the Gastrointestinal Tract, Section 4: Cancer of the Pancreas, pp. 1149-1150.
4. Louvet C, et al. GERCOR; Gemcitabine In Combination With Oxaliplatin Compared With Gemcitabine Alone in Locally Advanced or Metastatic Pancreatic Cancer: Results of a GERCOR and GIS CAD Phase III Trial. J CUn Oncol. 2005; May 20;23(15):3509-16.
5. Pelzer U, Kubica K, Stieler J, et al: A Randomized Trial in Patients with Gemcitabine Refractory Pancreatic Cancer. Final Results of the CONKO 003 Study. J Clin Onco12008; 26(suppl): 215S (abstract 4508).
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There Is Still Hope: A Patient With Metastatic Pancreatic Carcinoma Four Years After Diagnosis
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Erratum in: Cancer Res. 1990 Feb 15;50(4):1352.
Ben M. Chue, M.D./jeh
Seattle Cancer Treatment and Wellness Center
University of Washington School of Medicine, Seattle, Washington
Cc: Joseph P. Rank, M.D.
Udo P. Schmiedl, M.D., Ph.D.

Jon has an appointment for an MRI and PET scan on November 19, after he returns from his Idaho hunting trip. He is recently obsessed with duck hunting...anyone within earshot has heard all about the "Duck Club" He is just returning all soaked and satisfied from a day in the duck blind. It's nice to see him happy and feeling productive.

Here is a recent picture of Wyatt, now almost a month old. We are all going to church on Sunday, it will be the first time with both of the kids. Maelie went with me on the Sunday that Wyatt was born but hasn't yet been to the childcare. She loved all the music (dancing and clapping!) but had a difficult time sitting still for the rest of the service so she's going to try hanging out with the kids her age this time. Brunch at Denny's afterward (11:30) if anyone wants to meet up with us.

So far I am not impressed with Jon's ability to handle his cancer schedule. I figured since he's feeling well I should let him schedule his PET scan, MRI and investigate the Photo Dynamic Therapy. It's been two weeks and so far nothing is scheduled and we have no more information on the PDT. I suppose he is really sick of the entire thing and doesn't want to call them three times a day but honestly that is what it takes when dealing with and entity as large as the UW. If we don't have anything on the books by Monday I will assume my advocate role.

Patients of Dr. Chue have been emailing and we've basically formed a support group to survive while he is on leave. I've been doing some additional research on publishing his article and have had some great advice from Mari and her sister. We need permission to reformat the article and submit it to the appropriate publications.

Jon's up to 175 pounds, working out three days/week and started duck hunting for some fun. We had the duck for dinner tonight...definitely not my favorite but if you smother it in plum sauce it is reasonably edible. He leaves for a deer hunt on the 11th through the 17th and we are all excited about my parents visiting for Thanksgiving.

Jon's had a good week. His appetite has returned with full force, he's working out and even felt well enough to spend the day working in the yard with our nephew, Kyle. Before his last surgery they cut down trees on our property for firewood so Friday was chipping all the brush and scrap wood. He is tired and sore today but happy to be feeling productive. I was able to get him in to see my massage therapist, Christina, today for an 1 1/2 massage which helped all those sore tired muscles.

Jon has been talking to the schedulers at UW for the next PET scan and has them looking into the photodynamic therapy. We are still awaiting the day and time of the PET scan which will hopefully take place next week. Nothing moves quickly with an entity as large as the University of Washington. From my research, it appears that some photodynamic therapy research has been done at UW and WSU but so far no one can tell us if it's currently being utilized for patient care. I did find two hospitals in Tulsa and St.Louis that offer the procedure for metastatic cancer to the lungs but we are really hoping to stay close to home. Jon's favorite assistant, Carrie, told him, "if the procedure is done at all, it's done here". She is looking into to possibilities for us.

I'm still working on getting Dr. Chue's article published. My friend, Mari, has a sister in the Netherlands that is an editor for Elsivar, a publishing company. She emailed her the article this week and we are hoping this might be the contact that we need to get it into a medical journal.

Tonight was Kelsey's high school Homecoming dance. It is the first formal dance he has attended. He went with a large group of friends and escorted a young lady he's known since grade school. I can't help myself but to post at least one picture of him on the blog!

Jon and I went to the movies to see "W" tonight (great flick) and we returned home to Levi, Ericka and the kids (isn't that cool...multiples!)watching UFC at our house with their friends. It was great to have a little time to visit with everyone. Wyatt and Maelie are both absolutely adorable and we are all looking forward to the holidays.

Today we had the pleasure of meeting with both Dr. Chue and Dr. Reilly. Honestly, the two of them never cease to amaze and impress me! Our visit started with a warm reception from the entire staff; keep in mind that none of them have seen us since the end of May. There were yelps, hugs, and lots of joking around. Jon has many "girlfriends" at the clinic and they all came out to give him a bad-time and ask me how I can possibly put up with him?!

Dr. Chue was first and he started the visit by handing me a paper on pancreatic cancer that he has assigned me to have published for him while he is off to have his glaucoma surgery. It is essentially the story of 4 year survivor Aaron Barret and needs to be told both to the cancer community and to the world. He was turned down by his first submission and is completely pissed off about the entire thing. I've started my preliminary research tonight and am determined to make this happen. As I was hoping, Dr. Chue requested a PET scan and we will have that ASAP so he can review it before he takes his leave. At this point we are most concerned with controlling the systemic disease and focally treating the lung lesions. The type of treatment will depend on the results of the PET scan. Our first choice is a treatment called Photodynamic Therapy that uses laser to "zap" the lung tumors. We do not know yet if Jon is a candidate or where it is available but I'm working on both of those issues tonight.

Next we saw Dr. Reilly who fine-tuned all of Jon's supplements. He is currently focusing on Jon's digestive system and weight gain (the man is 165 pounds-not good). Next he prescribed the supplements that inhibit cancer growth and stimulate the Natural Killer Cells that will ultimately "eat up" the cancer and cell debris.

We are all anxiously awaiting the PET scan results and the liver MRI in November. Dr. Chue did not want Jon to take any of the oral chemo right now. He says it is too experimental at this point. He has also outlined a systemic chemo program should that become necessary in his absence. He also gave Jon his blessing to have "time-off" until January to regain his weight, strength and motivation before moving forward with any treatment.

Please keep Dr. Chue in all of your prayers. The man is truly a genius and the world needs his continued contribution to health and wellness. He will be on sabbatical from November 2008 through May 2009 for surgical treatment of glaucoma.

It's been a busy and interesting weekend. Jon's felt mostly good although he does have episodes of fatigue and nausea. Each day is a little better and he has walked Lakeland Hills both Saturday and Sunday. No weight lifting yet but hopefully next week.

We received a telephone call from Dr. Chue on Friday nighy, inviting us to a party at a fellow pancreatic cancer patient's home on Saturday afternoon. Her name is Sharon and she was diagnosed just a week before Jon. She hosted a party for patients and staff of SCTWC to celebrate her successful treatment. When we arrived at her home it was remarkable to see how fit and healthy she is...actually radiant. She is 60 years old and was diagnosed in October of 2006. At the time of her diagnosis she was "too busy" taking care of her sick husband to receive any treatment. Her husband passed away in November and she began treatment with Dr. Chue in December (and I think I have it tough?!). There were several other pancreatic cancer patients present as well as one metastatic breast cancer survivor. Three of the nurses, including our favorite, Dee, were there as well as the Chuemaster himself.

It was remarkable to listen to each of their stories. Sadly, they were all told by their original oncologists that they had only months to live. Fortunately for all of them they somehow arrived on the doorstep of Seattle Cancer Treatment and Wellness Center in search of Dr. Chue. In the rest of the medical community it is unheard of to for a pancreatic cancer patient to survive beyond a year and 6 months is considered remarkable. The most famous patient, Aaron Barret has survived four years and Dr. Chue loves to tell the story of how he originally presented Aaron's case to the Tumor Board at Swedish Hospital and they informed him that it was impossible for Aaron to have pancreatic cancer since he was still alive after 18 months. Dr. Chue had to prove to them again and again through scans, biopsies and slides that he was indeed this successful at pancreatic cancer treatment.

It was good for Jon to be around all of these survivors although he says that when he's away from treatment and other patients it makes him forget that he has cancer. There was a 70 year old Chinese women in our group who had survived pancreatic cancer over two years with a clean scan. She really kicked Jon's butt. She hikes Tiger Mountain every day with her husband and told Jon to quit worrying about killing cancer and start enjoying life. She reminded him that there was a reason that he got cancer in the first place and it was a message that he had to change something in his life. She has a PhD in Pharmacology and I totally enjoyed talking all the science and philosophy of cancer treatment with her.

On a more disconcerting note, Dr. Chue is having surgery on his eyes for glaucoma in November and will be on a 6 month leave of absence. We see him on Tuesday to work up the next game plan but he will be absent for this next phase of treatment. We will be seeing Dr. Cunningham at SCTWC and continue with Dr. Gosswami at UW. Most of Dr. Chue's pancreatic patients are taking a new oral chemo that is a derivative of the old Thalidimide from the 60's. It is used to suppress cancer growth once the disease is controlled. My hope is that Jon's next step will be that oral medication and possibly radiofrequency ablation to the lung tumor. He still needs to gain about 20 pounds before we move forward with another surgery or treatment. He's resistant to taking any oral medication but I'm hoping Dr. Chue will be persuasive on Tuesday.

JUST A FEW MORE

This first picture just cracks me up, it's so representative of each of their personalities!

More Baby Pix

Wyatt Douglas Nichols

Wyatt Douglas Nichols was born to Ericka and Levi Nichols at 12:31pm on October 12, 2008. He is 8lbs 5 ounces and 20 inches long. Mom, Dad, Big Sister and Baby are all doing well.

We have a new baby boy this afternoon! Wyatt is 8 pounds 5 ounces. Mom, Dad and baby are all doing well...more info and pictures to follow.

It's been a good week and Jon has felt well every day. He's still more tired then he'd like but all in all has recovered much better from this procedure then the last. He left Friday morning for a hunting trip with the Bartran boys and is expected back before my birthday next week.

I had an excellent day with Kelsey today at a campus tour of Seattle University. It's on the top of his list for colleges (at the moment) and I was very impressed with the school. We then went to pick out his tuxedo for Homecoming and met Elizabeth for dinner. She is back to school, work and finally feeling her old self again. It was good to see the Lizard (Elizabeth) back in her natural habitat (Nordstroms) :)

We are all still anxiously awaiting the newest addition to the family. Ericka has had lots of contractions but still no baby. Her ultrasound on Thursday weighed in at 9 pounds, 1 ounce. (yikes!) I promised her that I removed my evil spell that had been keeping her from having that child before my associate doctor returned from vacation...any day now!!!

Since my last post Jon's been out to dinner, walked Lakeland Hills twice and lifted weights once. He's been to church and joined Kelsey and LoriB for dinner at our house Saturday night. All in all a good weekend and he's saying he hasn't recovered this quickly from any of the prior procedures. He plans on leaving for a hunting trip Friday for deer in Eastern Washington. He's really skinny so we're all trying to fatten him up. I'm cooking up a storm tonight so there's plenty to eat when I go back to work on Monday.

Every days a better day for Jon. He was up most of the day and now naps on the couch instead of in bed. Kind of pathetic, but we measure improvement by being able to get from the bed to the couch! When I called him on my lunch hour he said he felt good and was going to try to walk Lakeland Hills today. Of course he crashed an hour later and never made it, but at least he feels well enough to think about it :)

We see Dr. Chue and Dr. Reilly on October 21st. I anticipate Jon will have a PET scan after that visit to determine how much active cancer is left and formulate our game plan. He has an MRI of his liver in November to measure the effectiveness of the embolization. He's planning on taking a nice long break from treatment this month and doing some local deer hunting. He's definitely ready for both.

Today has been Jon's best day since his surgery. He got up fairly early and ate a good breakfast of sausage, eggs and toast. He was able to work at his desk for a few hours and only napped part of the day. He's still having a fair amount of pain but has been able to cut back on the meds which makes him much more coherent :)

When I left for work today Jon was up out of bed and making himself some almond butter toast with bananas. Although he slept most of the day and still needs to take his pain pills every three hours it is an improvement from yesterday. When I got home from work we ate some soup and watched CNN and Monday night football for an hour or so. Now he's back to bed. I expect each day to improve from here. He is definitely going to need a nice, long break from treatment and a few hunting trips to regain his strength and positive attitude after this.

Jon's still in bed. He is not as nauseous now but still in a lot of pain if he skips a dose of his meds (which he does because it makes him feel woozy). He's not eating much but I did manage to get down a little homemade vegetable beef soup. I need to go back to work tomorrow. Elizabeth is here for a few days and was planning on helping out but she came down with a bad cold so she can't go near him :(

Jon spent all day in bed resting. His pain and nausea are under control with the meds but he's still exhausted. Elizabeth, Levi, Ericka and Maelie all came for a visit and dinner this afternoon. Jon was up for about 20 minutes for visiting but not energetic enough to join us all for dinner. It was great to have some time with all of them and we are anxiously awaiting the new addition. Ericka had her last ultrasound and the doctor says the baby is already 8 pounds, 2 ounces. She has 3 more weeks to go!

It's 8:15pm and we're getting ready to head home. Jon is weak but the nausea is minimal.

5:05pm and still here. Jon's sleeping, not vomitting and still saying he wants to go home sometime tonight.

It's nearly 2pm and Jon is still very weak and nauseous. They're trying some different meds and he's trying to eat small amounts of food. We may be spending one more night in the hospital if he doesn't significantly improve in the next few hours.

It is so strange how they can do the same procedure over and over and each time Jon has a different reaction. This time his pain is minimal but he has significant nausea. For some strange reason, that I will never fully understand, Jon refused nausea meds last night. After vomitting a few times during the night and this morning he decided that they might be a good idea after all. I suppose

It's been a good evening and Jon is awake, alert, and in minimal pain. We just had our visit with Dr. Gosswami and he informed us that they were able to address all of the remaining tumors on both sides of Jon's liver today. We will not know the final outcome from this procedure for about 8 weeks as the chemo will continue working and tumors will continue to die. They will do an MRI of the liver at the end of that time. Dr. Gosswami also told us that there is only one tumor in Jon's right lung that has increased in size. He suggested that we move up our appointment with Dr. Chue and schedule a PET scan to see any active cancer outside the liver. He still thinks Dr. Chue will want to do one round of systemic chemo but we may have the option of radiofrequency ablation should the one right lung tumor be the only active one in Jon's body. We will know more within the coming weeks.

I have to laugh when I watch Jon interact with all of these doctors and surgeons. He is such a character and it is obvious that they don't have any other patients like him. After Dr. Gosswami went over all of the medical information Jon gave him a 15 minute dissertation on Ultimate Fighting and how he should come over and watch it sometime. He also talked about how he had to hug Dr. Chue even though it is very taboo in the Chinese culture. Dr. Gosswami laughed so hard and told Jon that Dr. Chue is still probably in therapy over that!

Jon's spirits are good tonight. I think he's relieved that this time around seemed to be much easier on his body. Let's hope for a quick recovery and a chance for him to do some deer hunting in October.

Jon is out of surgery and resting comfortably. He's still groggy from the anaesthesia and already hooked up to his pain meds. He was a little unsure of which part of his liver they treated today but Dr. Gosswami will be up later tonight to give us the details. He did tell Jon that he has spoken to Dr. Chue and he does want Jon to resume systemic chemo after these procedures to address the tumors in his lung. It's not exactly what we were hoping for but certainly not a surprise. We see Dr. Chue on October 21st so I imagine treatment will start shortly thereafter.

1:45 just took Jon into surgery. The promise to have his dilauded machine waiting for him this time around when he gets back to his room.

1:10PM and still waiting for Jon to go INTO surgery :(

Embolization #3

We're back at UW Medical Center checked in for the last of the chemoembolizations. Jon is not too excited about going through this procedure again. It took him so long to recover this time he's not ready to go down the tubes so soon. We always hope that each procedure will get a little easier but you just never know until your there.

Sorry everyone, I've been negligent on the blog this week. I've had numerous people call, email, and ask me if everything is ok because they worry when I don't write anything. You can't imagine how much I appreciate knowing that we are in so many people's thoughts and prayers.

Jon was supposed to be gone for 12 days so I completely filled up my time this week getting caught up on things at work and home in preparation for his next surgery. As it turned out he returned home after a couple of days because he was just too tired to do all the things he would need to on a pack-in hunting trip. It was a big disappointment for him but I'm glad to see he is exhibiting a little common sense instead of running himself down before the next surgery. Jon did get to sleep on the ground, under-the-stars a night or two so that always makes him happy. He's been whining all week that I haven't spent anytime with him but I keep reminding him that he's supposed to be gone and I don't have him on my schedule until Wednesday night :)

His final embolization surgery will be Thursday, September 25th. I've sent all of his records/ct scan to the appropriate doctors and am formulating the next step in his treatment plan. There are multiple small tumors in his lungs that will need to be addressed after he recovers from the embolization. The choices for treatment are oral chemo, IV chemo, or radiofrequency ablation. I've already talked to Dr. Reilly and am waiting to hear back from Chue and Gosswami. Reilly reminded me not to make too big of a deal about the lungs otherwise the UW might put the kibosh on the last embolization. Sometimes I forget about the "corporate slaugherhouse" mentality so it's good that I have Dr. Reilly to keep me in reality. The final call on the next procedure will be by Dr. Chue. He will be reviewing Jon's scans this week and we have an appointment with him in October. Jon has not regained all of his strength and weight from the last procedure so I'm expecting the next few weeks will be pretty tough. When I look at his last CT scan there is very little cancer in his liver but it is absolutely full of chemo. I hope and pray that this next procedure isn't as difficult for him since there is so little cancer left to kill. You just never know until you're there.

I'm still photographically challenged but I did manage to get a picture of Jon from our last backpacking trip in August. He looks even better now with a full head of hair.

Ericka and Baby

I've been promising everyone pregnant pictures of Ericka and here she is in all of her glory! Tonight we had her baby shower and a wonderful time was had by all. She is due October 18th.

Tumor Markers

All week I've been stewing about Jon's lungs. Are those tumors? How many nodules can Dr. Gosswami blast with radiofrequency ablation? Does he need more systemic chemo? etc. etc. etc. I have to say that the cancer rollercoaster has a way of wearing you down.

I still don't know the answer to those questions (my project for tomorrow) but we did have a bit of good news today. After nearly 18 months of treatment, Dr. Chue finally discovered a tumor marker that was elevated in Jon's blood. This is helpful because it gives us a way of monitoring the cancer without scans. A normal value for his AFP (alpha feto protien) is <8. Jon's was previously in the 40s at its best and as high as 90 in the recent months. After his last embolization the marker dropped to 34...best its ever been!

Jon received his results from Dr. Goswami last week and as usual we're just a little bit more confused then we were before. Everything looks good in the liver and digestive system, the liver is just full of chemo at this point. He is scheduled for his next embolization on the 25th. The small tumors in his lung remain and appear to be slightly larger. They also reported some small nodule that they say have not changed size since the last scan....we have never heard of these so it was a surprise to us. Dr. Goswami said he would consult the radiologist and let us know if there is anything to be concerned about. So far we haven't heard anything and you know I just can't let sleeping dogs lie so I will follow up this week. Jon leaves on Thursday for a pack-in elk hunt. In his absence I will consult the radiologist, schedule a follow up with Dr. Chue and Dr. Reilly and prepare for the last embolization. Although Jon's feeling pretty decent he is still frequently fatigued and it has taken at least a week longer to recover from the last emobilization. We anticipate the next one might take even longer (so much for our optimisim on the last go around!). We are hoping the lung tumors can be removed with a radiofrequency ablation and not another round of systemic chemotherapy.

LIVING STRONG

My staff and I spent this weekend providing chiropratic treatment and massage therapy to all of the athletes who participated in the US Women's Triathlon, a fundraiser for ovarian cancer. After the event, Nadine Mortell and I stopped by TopFoods to pick up a few groceries. We were wearing our "Dr. Lorri Nichols" triathlon sweatshirts. A gentlemen and his daughter stopped us and asked us if we did the triathlon and I told him, "not this one, we just provided care to the athletes." He asked if I was Lorri Nichols and told me his name was Ed Nichols, his daughter who accompanied him and his older son Eric are schedule to do an adventure triathlon in Seattle next week. This is an event that includes running, cycling, canoeing, and roller blading. Sounds like fun. He told me of his son, Eric's battle with cancer and directed me to the Livestrong (Lance Armstrongs) website. Below is Eric's story of survival. Sure is a small world!



FROM LIVESTRONG.ORG
Eric Nichols

Eric is a two-time cancer survivor.

I became a cancer survivor on January 1999. I was diagnosed with carcinoid in my single kidney.

At that time, we did an auto-transplant. They removed my one kidney, removed the tumor, and put my kidney back in my pelvic region. From there, we proceeded to have quite a few problems with dialysis and the kidney shutting down. The kidney wouldn’t seal up right away. I spent 31 days in the hospital with that surgery.

I took three months to recover, and then we were on a high watch. There was no chemotherapy, no radiation. We did a lot of CAT scans thereafter watching for any growth or any spread. They didn’t see anything right away. We went about two years with negative results on tests. My wife and I weren’t able to have any kids, so I went to see a urologist on that subject. He had asked me about my past, and I explained to him about the original surgery and what was going on there. He wanted to have me checked for varicoceles in my testicles. We did an ultrasound, and lo and behold, we had seminoma in the right testicle. That was a shock to everybody. We went ahead and had a surgery to remove that. That was an outpatient surgery.

We went about another year-and-a-half, and we started doing nuclear scans checking for more of the carcinoid. Two more tumors showed up. We decided that we were going to go in and have those removed. They ended up being centrally located on the lymph nodes in the digestive system. They did a surgery at Stanford. At the same time, they found four more nodules on the liver, and we did resections of the liver. There ended up being a total of seven nodules that they removed at that time. Since then, I’ve been cancer free as far as we can tell. That surgery was two years ago.

I had a pulmonary embolism after my first surgery. I had been home eight days after the original surgery. It was the 11th day thereafter, and I was having a hard time breathing. I was just sitting in the chair at home, and I couldn’t catch my breath. I went to my local doctor. They ended up sending me to the local hospital, and we did another nuclear scan there. That showed a blood clot in my lung. They did blood thinners, and that put me back in the hospital for an extended stay, another 20-22 days. I have a Factor 5 Deficiency. It’s a genetic trait that I’ve acquired from Mom and Dad. We’ve since found that one of my sisters also had this Factor 5 Deficiency. It could be anytime that you’d be in a resting situation, where you wouldn’t be moving. That 11 days out of the hospital, I was sedentary at home. The blood clot would start in your leg, and then it would move up, and can go to your lungs, your brain. It’s a fairly dangerous situation. I’m always on the watch for that even now, making sure that I’m not sedentary. They suggested even on long plane flights that I should get up, walk around and make sure that I’m not sedentary for any extended periods of time.

My fecal incontinence is a result of the carcinoid. It’s pretty inconvenient. I can have diarrhea as many as five, six times a day. With working schedules, things are very inconvenient. Fortunately, I have an employer that’s very understanding. I take a shot every two weeks. It’s Sandostatin that slows my digestive tract down. That has really helped a lot. I still have diarrhea on a regular basis, but it’s nothing that I can’t control with over-the-counter drugs such as Imodium. I’m able to continue life pretty normal now. But before we started getting this shot, it was rough. I was suffering from dehydration. I’m a very active, athletic person, so my diet is more focused towards the athleticism than it is to control that. I do find that when I have a higher fruit and vegetable intake, that fiber works its magic.

I’m very active. I’m an active mountain biker and road biker. I do adventure races, which are kayaking, mountain biking and trail running. I train diligently for these. If I stay strong, that’s going to help me in the future to beat the cancer. I probably exercise to a fault. I’m pretty fanatic about my exercise. I probably ride my mountain bike and road bike upwards of 125 miles a week, and I run probably close to 45-50 miles a week. It’s not uncommon for me to spend two or three hours, two times a week in a kayak. I spend a lot of time working out.

The hot flashes are part of the carcinoid. The typical symptoms are diarrhea, flushing of the face and hot flashes. The flushing has been an uncommon part of it for me. It’s been real common for other carcinoid patients, but I have had a little bit of flushing. It tends to happen a lot during nervous moments and also when I don’t get my shot on a regular basis. If I miss an appointment, the flushing and hot flashes can get more common. The other problem I have with that is I get really bad night sweats, to a point where I have to get out of bed sometimes. The hot flashes can be inconvenient. It is carcinoid syndrome, and it’s an ongoing process. These tumors are probably still in there someplace. They’re at a microscopic level, and they put off a hormone that causes these symptoms. The Sandostatin is supposed to subside these symptoms or help with them, and it usually does.

My wife and I have had an extraordinary relationship through this. She’s always been there for me. She’s been strong for me. She is always there. She’s my best friend. I can talk to her about anything. I never hold anything back from her. Some of the times that I’ve gotten bad news, I’ll go to a scan, and I’ll call her right away and tell her. I’ve been sitting in the truck, on the cell phone with her, just crying and tore up with the bad news that I just got, and she’s rock solid for me. It’s been phenomenal. Even when I was telling her that we weren’t going to be able to have kids, she was very understanding. She’s been very strong and by far and away my strongest supporter.

I had a situation with my dad and family members during surgery and right after surgery. My dad came to me one time right after surgery. He’s a very religious person. And Dad, I love you. But he came to me, and I was in agony, blue and just out of OR. He said to me that he had made peace with God and that he was able to accept it if I didn’t make it through this. To me, at that time, not making it wasn’t a possibility. At the time, I was really upset with him. I thought, “You’ve got to be positive. You’ve got to think that we’re making it. There is no other alternative.” Looking back on it, though, I think now that that was his way of dealing with it. All family members deal with these things in their own particular way. As a cancer survivor, sometimes we need to accept the way that they deal with these things and just take it day by day.

With meeting other survivors, early on, it was difficult. I had had contact with a good friend from work, and his wife had non-Hodgkin’s lymphoma. She was my support group for the first couple of years. After the second surgery or third surgery with the carcinoid, we sought out a support group, a carcinoid support group. We’ve met many carcinoid survivors. I attend their meetings probably three, four times a year, and they’ve been a wealth of information. Meeting survivors is a necessary part of cancer survivorship. Currently, I’m dealing with a coworker that has a 13-year-old child and he’s just been diagnosed with a cancer. I’m trying to help them understand the process and use my experiences to help them along. While they’re still fresh with it, I’m hoping that they’re going to move in the right direction here real soon.

I think all cancer survivors live with fear of recurrence. For me, I’ve been told that I have close to a 90% chance of it coming back. I accept that. I want to be aggressive with it, but it is definitely a scary thought to think that we could have to go through this all again in the future. I worry about leaving my wife as a single individual, middle-aged, and that would be difficult for her. We’ve been married for almost 14 years. We were high school sweethearts. My thoughts on it are to stay aggressive with the CAT scans and the other scans. I don’t ever miss appointments. When you hear that cancer word, your first thought always is, “It’s a death sentence.” It’s not that way, but a lot of people feel that way.

With live strong, ever since I’ve heard that, I practice that. Live strong, be strong. I try to be strong for my family, my wife. I try to be strong for my racing teammates. Strong for other survivors. Try to be strong for everybody, myself. I live strong by working out. Sure, I don’t work out near as much as Lance does, but I thoroughly enjoy my exercising every day, the mountain biking, road biking, running. That’s what I’m about. That’s what I do, and I focus on that. In the hard times, when I get bad news, nine times out of ten, I’ll go out for a run, for a ride and try to live strong through that.

My name is Eric Nichols, and I’m a five-year cancer survivor.

Jon continues to slowly improve. He's not in much pain, no nausea but remains fairly fatigued and still naps frequently. He's done Lakeland Hills the past three days and I anticipate he'll start his weight workouts this week. He has a pack-in elk hunting trip planned for Sept 13-22 so his goal is to back to normal before then. It seems his recovery is taking a little longer this time. Next(and last)embolization should be the last Thursday in September. He has an appointment on Friday, September 5 to see Dr. Goswani to review the last CT scan which will measure the effectiveness of the first embolization, the uptake of the 2nd, and monitor the small tumors in his lungs. Keep those prayers and positive thoughts coming for good results.

Kelsey goes back to school today, he is a Junior in high school this year and is starting to get serious about choosing a college. Since his Tarot card reading he tells me he's going to become a Catholic Anesthesiologist (long story :)) and go to undergraduate college at Boston University. I suggested that he keep that goal in mind every time he doesn't feel like finishing his homework or studying for an exam. He had a good summer and seems ready to go back to school.

Elizabeth and I spent yesterday shopping and planning for Ericka's baby shower on September 13. I have a crazy schedule until then so we got as much done yesterday as we could. Ericka has been having premature contractions so she had to take a month of work. It's been frustrating for her because it cuts into the time she had reserved for after the baby and Levi's been working 50-60 hours a week to try to make up the difference. The doctors will allow her to go back to work when she hits the 36 week mark so if she were to go into labor the baby would be safe. I can't imagine going back to work that late in the pregnancy! We are all excited about the new addition to the family. Ericka and I have been having technical difficulties with our cameras and computers so I still haven't been able to get a picture of her with her pregnant belly on the blog. I am shooting for having an operative camera by her baby shower on the 13th.

Every day is a better day. Jon's mostly just very tired and still sleeps a lot. Yesterday we spent the day with Elizabeth looking at some retail spaces for the botiques she strives to open one day. It's a few years off but she is very motivated and its fun to plan and dream with her.

Afteward Kelsey, Elizabeth, and I had our Tarot Cards read (Jon slept in the car). The women told us all that Jon would be cured, I was coming out of a dark period in my life (thank God!), Elizabeth would have twins, and Kesley would become a doctor after college on the eastcoast. All sounds good to me.

We then had dinner with Kristi on the way back to Sumner. It was good to have some time with her and she continues to amaze me with her strength.

Well he's up out of bed and only taking ibuprofen for mild pain/fever. Hopefully every day will get better from here.

Jon's been resting most of the day. He hasn't really had any pain or nausea but is very tired and has a mild temperature. He got out of bed this evening to do a little paperwork and I'm trying to get him to eat a bit of chicken soup and jello.

I've been practicing a lecture I'll be giving on Friday about stress and it's affects on your health. I should definitely be an expert by now!

We're home and Jon is resting comfortably. He's been able to reduce to one pain pill every four hours so that is a huge improvement. They just couldn't get that IV machine setup fast enough last night. He's taking three different meds for nausea as well.

His sense of humor has returned until I knocked him out with his pain meds at 5. The nurse from this morning actually asked me if he ever speaks?? I told her she was lucky he was keeping to himself :)

Pain and nausea are under control with oral meds so we're heading home.

Well we thought we were a little wiser this time around but to quote Jon, "Just when you think you've seen it all..." He remained in severe pain with vomiting most of the evening. Fortunately the Dilaudid finally kicked in and made the pain manageable. After that they were able to give him meds for sleep and nausea. It's 8am and he's still asleep. They should be here shortly to take him for his CT scan.

Although Jon is in severe pain the surgeons are very pleased with the procedure and the amount of cancer they were able to kill. They treated a portion of both the right and left lobe that had the highest concentration of cancer and are confident that they were successful. They both expect Jon to have this degree of pain because of the intensity of the treatment. Jon shook their hands and thanked them. After all, this is about killing cancer and we all know Jon's favorite saying, "Pain is weakness leaving the body." I think I'll give him that tshirt to wear when we get home.

After the CT scan they will attempt to move him from IV to oral Dialudid. If that will control the pain we will still be able to go home today.

Things took a turn for the worse this afternoon as the two oxycodone had absolutely no effect on Jon's pain level. Next they gave him another oxycodone and a shot of morphine, still no change. Finally Dr. Goswami came in and ordered Dilatted (sp?) in a self-delivery machine. After a few pumps of that Jon is pretty much knocked out. It looks like it may be a rough night after all. The kids have left for the evening and we're hunkered down for the night with lots of drugs.

Jon was out of surgery and back in his room by 1:30. He was in good spirits and ate a large lunch immediately. He asked the anesthesiologist to give him the minimal amount of anesthesia so he was awake and alert when he got here. The only drawback is that he is much more aware of his pain level now. The nurse just gave him two oxycodone so he should be feeling better in about 30 minutes.

The surgeon opted to treat the left lobe of his liver rather then repeat the right one. We will ask for more details when we see him tonight, but we're assuming its to give the right lobe a little more healing time.

Jon and I are back at the UW this morning for the next chemoembolization. We're a little smarter, relaxed and prepared this time around. Jon made sure to eat as much as he possibly could yesterday and topped everything off with a midnight protien shake, just in case it was an all day wait with no food. His weight was 178 last night...just a few more pounds to go to reach his normal weight.

We were here at 6:30 am for all of the preliminaries and they took him into surgery at 11. He should be approximately two hours. I'm napping in his room until the procedure is over and the kids are coming by this afternoon. I promised to have a meal and glass of prune juice waiting for him when he returns :)

Embolization #2

We're back from vacation and preparing for Jon's next chemoembolization. He is feeling strong and looks great (equipped with hair on his head, eyelashes and eyebrows). We are to be at the UW Medical Center on Thursday at 6:30 am for the second chemoembolization. Dr. Goswami will be doing the second portion of the right lobe of Jon's liver. They tell us that the side effects should be about the same but Jon and I have decided that they won't be as bad since there is so much less cancer to kill and we have the prior knowledge of having already had one procedure. All in all it's still much better than systemic chemo.

The kids and I had a wonderful vacation in Connecticut and NYC. It was great to see my sister and her family. When Elizabeth and Kelsey were younger they used to spend a few weeks a summer with their cousins at my mom and dad's in Pennsylvania. When the girls went off to college that ended and this is the first time all the cousins have been together in approximately five years. It is amazing to watch them pick up where they left off, like they just saw each other last week. I won't be surprised if Kelsey decides to go off to college on the east coast to be closer to his cousins and extended family. I guess that means I'll just have to make more trips back there!

Jon and I attended Ed Frawley's memorial service on Saturday. It was a moving tribute to Ed, his life, and the lives of the many people he had touched. Two coworkers came all the way from Japan to honor Ed and his family. Many coworkers, family members and childhood friends paid tribute to Ed through sharing stories about his childhood, friendships, and family. I would say Kristi, Cody and Kyle are doing as well as could be expected under the circumstances. Please keep them all in your prayers during the coming months.

All in all it's been a pretty good weekend. Yesterday, we attended the wedding of Levi's close friends, BJ and Ariel. Levi and Maelie were both in the wedding and were as beautiful as ever. We had to laugh as Maelie squealed with delight when she walked (and stomped) on the carpet of rosepetals walking down the aisle. Poor Ericka chased her around as she held onto her pregnant belly. That girl is definitely her father's daughter! They are an adorable young and growing family. Elizabeth and David were also in the wedding of their friends from EWU, Stephanie and Doug, in Pasco on the same day. They returned to Seattle tonight.

Kelsey, Elizabeth and I leave for a trip to visit my sister, Barbara and her family in Connecticut on Tuesday. We will be back in time to honor Ed Frawley at his Memorial Service next Saturday. Jon will hold down the fort and maybe do a little backpacking while we are gone.

I really need to get a picture of Jon on the blog...everyone at the wedding commented on how great he's looking these days. His hair is back as is the sparkle in his eyes!

So no news will be good news. I should be back to the blog a week from today.

Memorial Service for Ed Frawley

Ed's Memorial service will be Saturday August 16th at 2:00 @ Orting Community Baptist Church

The address is 308 Kansas St SW
Orting WA 98360
360-893-4411

Return of the Chuemaster

Jon and I received a telephone call from Dr. Chue this week to check up on Jon and his recent procedures. It was a wonderful reminder of the excellent care and compassion we have received at the Seattle Cancer Treatment and Wellness Center.

Right now, Jon is under the care of Dr. Goswami at the University of Washington/Seattle Cancer Care Alliance until the embolizations are complete in September. Dr. Chue is just following him with scans and bloodwork. He reminded us to make sure that Jon's next CT scan includes his lungs so they can monitor the small tumors there while the focus remains on his liver. Once the embolizations are complete we will return to SCTWC for follow-up and on-going monitoring. Dr. Chue already has a "maintenance" plan in place.

He informed us that pancreatic cancer survivor, Arron Barret did complete the Seattle to Portland Bike Ride this year. He is a four year survivor, virtually unheard of outside SCTWC. Dr Chue also teased Jon that he had numerous other patients that have already "out-survived" him in pancreatic cancer. You know there's nothing like a little bit of competition to keep Jon motivated. I am always surprised at Dr. Chue's sense of humor...much more then what you would expect from such a smart guy!

We had an excellent backpacking anniversary trip and are going on a bike ride today. Jon looks really good with hair, eyebrows and eyelashes, he's still a little on the skinny side but is working hard to put on some more muscle. I'm working on getting a recent picture on the blog but my digital camera is broken :(

In Honor of Ed Frawley

On Sunday night, August 3 we received the tragic news that our brother-in-law Ed Frawley had died suddenly of a heart attack at the age of 48. He and his wife, Kristi (Jon's sister) had been living in Japan the last few years while Ed worked as a liaison between Boeing and Mitsubishi. They have two adult sons, Kyle and Cody who live nearby in Buckley, WA. Kyle showed up on our doorstep late Sunday night with the news.

Tonight the family gathered at our home to share memories and stories of Ed's life. We were able to see Kristi via vidoecam in Japan with our niece Ann's computer. Kristi shared with us numerous stories of honorariums and memorials that have already taken place at the Mitsubishi Plant in Japan. Ed was well-loved and respected by everyone he knew. With the help of friends, Kristi is packing up their home and attempting to return to the US by early next week. Her best-friend Pam is already there and her son Cody leaves for Japan early tomorrow morning.

Please keep the Frawley family in your prayers.

This has been a good week for us. Actually I have to say Jon has felt better than I have after crashing my bike 3 times during the Seattle Century when my clipless pedals refused to unclip!! He's offered me a few of his Oxycodone but I'm sticking with ice, adjustments, massage and a few ibuprofen. We both feel well enough to leave for a weekend backpacking trip to celebrate our 2nd wedding anniversary. It's hard to believe how much has happened since then and I am grateful for every day (some days more than others!)

Jon saw Dr. Goswami today for a follow-up from his first chemoembolization. The post CT scan showed excellent uptake to the tumors and Dr. Goswami remains optimistic about curing this cancer. We could not have asked for better doctors on this journey. The next procedure is scheduled for Aug 21 where Dr. Goswami will finish of the rest of the right lobe then one more shot at the left lobe in September. It's getting to the point where Jon is scheduling procedures around his backpacking and hunting trips. With any luck the CT in October will be clear and our life will return to some semblance of normal.

Jon woke up Sunday morning without any pain. He lifted weights today and felt good enough to go out to dinner with me and some friends tonight. He has a follow-up visit with Dr. Goswami on Friday.

And He Calls Me Dr. Pooh...

Upon Jon's return from Lakeland Hills Thursday night he was doubled over in pain. Enough, we're going to the emergency room! You know if he actually agrees the pain must be severe because this guy never complains (about pain, anyhow)

After 8 hours in the ER, bloodwork, CT scan etc., it turns out that the pain is from superchemocancer poop plugging up his large intestine. Nothing serious but definitely painful. Jon says it almost feels like a chemical burn so I loaded him up with aloe vera juice. The ER doc also gave him a prescription to clean him out, he's feeling much better and actually left for a camping trip/bachelor party with Levi last night.

Never a dull moment.