Sugeon Number One

We saw Dr. Hart this morning and he was "pessimistic" about Jon having the liver resection surgery. You may recall that in the CT scan from June the largest tumor was next to a major blood vessel. As far as we can tell that particular tumor hasn't shrunk by much so we'd have to see some big improvement in the next CT scan to make this a possibility. Jon is scheduled for his next scan on March 13 with a follow up visit with Dr. Hart afterward. We also see Dr. Precht the following week. Looks like nothing will be happening in the immediate future.

Jon actually feeling pretty good today. After our visit to the surgeon he had acupuncture and then put a cabinet together for me at Bally Fitness. He actually made it through the entire day without a nap! Jon plans on doing some coyote hunting this weekend and enjoying this time away from chemo. Kelsey, Levi, Ericka, and I are taking Maelie to the zoo :)

We just returned from our appointment with Dr. Chue and he gave us his blessing on discontinuing this round of chemo and moving forward with the liver resection surgery. He was very pleased with our choice of surgeons and we have an appointment with Dr. Michael Hart on Thursday the 28th, and Dr. Andrew Precht on Thursday, March 6. Although this is a fairly common procedure with other forms of cancer it has never been done on a pancreatic cancer patient. The trick now will be to get one of the two top liver surgeons in Seattle to agree to perform the procedure. After repeated CT scans, Dr. Precht does finally believe that the cancer is gone from Jon's pancreas but we need a good PET scan to move forward. We will wait to order the next PET scan until we have the initial consultation with both surgeons. Doxil continues to work in your body for 30 days after your last chemotherapy so waiting a few weeks should show an even better result.

We did talk to Dr. Chue about the possibility of doing the surgery laproscopically but he thought it was not the best choice under the circumstances as the surgeon needs to be able to see any possible malignancies. They will also remove the couple of lymph nodes that were also affected by the original cancer.

Jon seems a little better today, or at least he's still awake at 2pm with only an hour nap this morning. I laughed today when he told me feeling like crap wasn't so bad because he doesn't go anywhere or spend any money :) His hands and feet look like lizard skin and he says they feel like you just picked up a hot kettle, but at least he can walk around a bit. No more heart of back spasms since the weekend.

Dr. Chue is already brewing up a fresh cocktail for the last chemo which will take place after surgery. He's given me a new list of drugs to research and I am armed with syringes for more interferon and lukeine.

Everybody pray for a good PET scan this month!

Jon's doing somewhat better today. I came home to check on him at lunch and he was actually up and around, working a bit at his desk. He did go back to bed after lunch and slept until 6 or so. When I got home from work he was quite nauseous but felt better after dinner (which he managed to prepare). I did cancel his chemo tomorrow and we get to see both Dr. Chue and Dr. Reilly in the morning. He will also have some more blood tests.

I want to tell you all a little more about my fundraiser. It is sponsored by the Leukemia and Lymphoma Society of America and has a suborganization called Team in Training. In all of my fundraising and endurance events I have never found an organization as inspiring as this group. They sponsor all kinds of events from triathlons, marathons to distance cycling, all designed to benefit cancer victims and their families. I am connected with the cyclists and have several wonderful coaches. We are scheduled to practice as a group every Saturday and also train individually. This Sunday I was scheduled to ride the Chilly Hilly (30miles around the hills of Bainbridge Island) with my team. Naturally, with Jon feeling so poorly I cancelled out. After I texted my coach to let him know I couldn't make it, I was struck by how every single person in this group has a story similar to mine. Some people are there because they lost a spouse, a friend, or a child. Everyone of them is there to make a difference. I am so inspired by each individual I have met in this process and by the tremendous response I have received from all of you. It has made me realize how much cancer can make your feel completely powerless and that by our participation in events like this we all can truly make a difference. I am sincerely and eternally grateful for all of your encouragement and support.

It's been a rough weekend for the old guy :( We went to a nutrition seminar on Saturday, he did OK until about 3pm when he left early to take a nap before we went out to dinner with friends. When I got home at 5:30 he was exhausted and having terrible spasms in his back. We ended up canceling our dinner plans and going to my office so I could give him some chiropractic TLC. It helped for a few hours but it came back with a vengeance in the middle of the night. We managed to make it to church in the morning but then went to my office to do some x-rays and more treatment. It appears that he has had another vertebral body collapse, this time at L5, last time it was in his the thoracic spine. The collapse is the result of him losing bone density from the steroids they give him to prevent an allergic reaction to the chemo. The only good thing is that he had such a problem there for years (a spondylolisthesis of L5 we discovered when I x-rayed him 30 years ago) that the vertebra was already fairly fused to the one below it. Although it was very painful over the weekend it shouldn't cause him continued problems. All the exercise he's done over the years has prevented him from having much pain there. I started him on calcium and magnesium supplements this afternoon.

He has slept most of the afternoon and has not had any more spasms in his back or heart. His hands and feet have calmed down as well. Jon's currently resting comfortably on the couch in front of a warm fire. Hopefully tomorrow will be a better day. We are both anxious to stop this round of chemo and get the surgery scheduled.

I've had a lot of calls and emails saying that its difficult to post a comment on the blog. I will look into that and see if I can fix the problem. I do appreciate everyones emails when the can't leave a comment.

I've also had a number of people ask me who they should make their check out to for the cancer fundraiser. It should be written to the Lymphoma and Leukemia Society of America

Thank you for all of your ongoing prayers and support.

Jon's had a pretty crappy past few days. He has felt tired all week and by Thursday the "hand/foot syndrome" became pretty uncomfortable. We've been packing his extremities with ice and Ericka gave him a Reiki treatment tonight that seemed to help. He also said he's felt some cramping in his heart for the past few weeks that he never mentioned until tonight. We have an appointment for chemo on Tuesday but it is unlikely that we will move forward with the rest of his treatments under the current circumstances. We also have an appointment with one of the surgeons, Dr. Hart on Thursday. If Dr. Chue recommends that we discontinue this course of chemotherapy we will go ahead with the scans and move the surgery up. We should have a much better idea of our course by the end of next week.

My Latest Project

February 21, 2008

Dear friends and family,

When Jon was first diagnosed with cancer he asked me to do two things. First, be strong and second, keep our lives as normal as possible. This is a tall order when you’ve only been married for three months and the doctors just told you your husband has two months to live. Jon never asked me to devote hours of endless research for treatment options, accompany him to weekly chemotherapies, or come home from work to feed him lunch when he was too weak to get out of bed. He didn’t ask me to schedule and coordinate all of his appointments, interpret his scans, or sit by his bedside day and night when he was hospitalized. The job of a cancer patient’s spouse is long and arduous. Nevertheless, we somehow find the courage and strength to face each day without hopelessness.

You might then ask yourself, “What is “normal” for Jon and Lorri Nichols?” Well, our fist date was a hike and our honeymoon was a backpacking trip. We have ridden our bikes from Seattle to Portland and to the top of Mount St. Helens. Jon actually proposed to me on a mountain bike at the top of Grass Mountain which is a 4000 foot vertical climb. He quips that he was only going to propose if I made it to the top (but secretly brags that I am the only women he knows who has done so.) We’ve owned and operated two successful businesses that we individually started from scratch. We’ve raised four beautiful children, both separately and together, and have one adorable granddaughter with another on-the-way in October. I certainly never thought we would end up here, fourteen months into treatment for pancreatic cancer with a liver resection surgery just around the corner. What a time to plan a bike ride!

I am participating in a 100 mile cancer fundraising bike ride now because every day thousands of people are told the same thing, “The person you love is terminally ill.” Every one of those people and their families deserve the support of those of us who are healthy and able to do the things that they can’t. Every one of them deserves a cure.

I am asking you to support me in honor of my husband, Jon, because this is what we do and right now he can’t. I am riding for every cancer patient that has to endure the routine weekly chemotherapies and its terrible side effects. For the majority of patients that don’t have an industry-leading caregiver like Dr. Chue to remind them that there is a reason to hope.

Please support us by sending your tax deductible donation to me at the address below or check out my website www.supportlorri.com to donate online. I must raise $4,500.00 to participate. The bike ride, sponsored by the Lymphoma and Leukemia Society of America will be held on June 1, 2008 in Lake Tahoe. I am hoping next year that Jon and I will repeat it together.

Thank you for your support,

Lorri A. Nichols
18319 53rd St. Ct. E.
Lake Tapps, WA 98391

Chemo Tuesday

Today was a fairly uneventful chemo. Jon went solo since he was feeling OK and I had lots of office stuff to do. Surprisingly his red counts were all up but because he ended up refusing his Neupogeon injection last week (yes, the one he agreed to last Tuesday!) his white count was in the tank. I'm giving it to him tomorrow even if I have to get Levi and Kelsey to hold him down! I reminded Jon of how he ended up in the hospital last year with double pneumonia. He says he doesn't remember a thing but he WAS unconscious the first 48 hours of that escapade.

I made him two surgical consultation appointments and sent record requests to all of his providers and imaging centers to collect the necessary data for the surgeons. Our first appointment is February 28 with Dr. Michael Hart.

Keep all of those prayers and positive thoughts coming our way!

Grandbabies On The Way!

Jon returned from Idaho to the exciting news that Levi and Ericka are expecting a baby! The old guy cried, of course. We celebrated Sunday night with a family dinner and everyone is extremely excited about the new addition. I am a bit concerned that I am going to have to fight ALL of those Rogers women for some time with the little one but I'm sure we'll figure something out :)

Jon is on #5 of the 12 chemos in this session. Everything went pretty well today but he is starting to get the "hand/foot syndrome" they warned us about. Currently his hands and feet are only slightly red but apparently they can become quite swollen and even blister with the Doxil. To prevent this they give him ice packs for his hands and feet during the chemotherapy and then he is supposed to continue with the ice packs for 2-3 days after chemo. His white and red counts were all still low so he grudgingly agreed to the Nupogeon injection which I am supposed to give him tomorrow night.

Jon also mentioned today that his liver is a little sore since starting the Doxil and it seems to get a little more so each day. We are encouraged that this is a sign of more tumor death since it correspondended with the onset of a new treatment. They drew blood for his tumor marker today so we should know more next week.

We've had more discussion with the doctors on the liver resection and asked about the laproscope. They are all going to discuss it with Dr. Chue and get more information to us next week. In the meantime we continue to reasearch surgeons and I am going to collect all his scans and start to schedule some consultations. I guess we(at least I) went from being a little surprised and overwhelmed by the possiblity of surgery to excited about the possiblity of a real cure.

Jon's spirits are ususally good and he is planning on driving over to Idaho with Rex to see our friends Ray and Leone who are visiting their ranch in Riggins. He's been pretty tired towards the end of the week, post-steroid crash, so I'm happy he is not going on the trip alone.

Too Much Snow and Liver Resections

Its been snowing like crazy here in the mountains of Washington. Jon has been east since Thursday and the kids and I were heading over this morning. Well until the avalanche and the closed pass. We spent the day goofing around in Seattle instead while Jon sleeps in his truck until the pass opens at midnight tonight. So no snowmobiling this weekend for the fam.

I've been doing some research on liver resections and found that the University of Southern California Medical Center is doing them laproscopically. That is exciting because it makes the surgery much less invasive and therefore less risky with a shorter recovery. I will talk to Dr. Chue about it next week and explore the possiblity of finding a surgeon in our area or traveling to California for the procedure. I don't know if Jon would be a candidate depending on the size of the tumors but its an exciting possiblity.

Deep Breathing

I feel like hyperventilating everytime I think about Jon having that surgery....sometimes in a good way, sometimes in a bad! On one hand it's exciting to think about a potential cure, on the other hand the thought of him going through the procedure and the long recovery is almost more than I can stand. Jon and I have been talking about how "comfortable" we've become with our routine of chemotherapy. Just plodding along each week, knowing what to expect, which days will be good or bad. I thought we'd have more time to prepare for this eventuality but I have to remember that there is a small window where the cancer has shrunk enough to make surgery an option, yet the patient is strong enough to survive the surgery. It appears that Dr. Chue thinks that window is now. This is it, the time find out whether this cancer is indeed curable or not. Either way it will give Jon the best chance for a cure or long-term survival.

Jon takes all this in stride. When I share my thoughts with him he reminds me that there's a 30% chance chemo won't shrink the tumors enough to have the surgery, a 30% chance that it will, and a 30% chance that this round of chemo will kill the rest of the cancer and surgery won't be necessary. Then he went hunting and reminded me that we are to live a normal life despite it all.

So off I go to work, then to take Kelsey for a job interview, his driver's test, a meeting at the high school for International Baccelaruate, piano lessons, etc. etc. etc. Saturday morning Levi, Ericka, Kelsey and I are also heading over the pass to meet Jon at our friend's cabin for a weekend of snowmobiling. Sounds like a pretty normal week in the life of a cancer patient and his family :)

A Visit From Dr. Chue

We are just finishing up our ususal Tuesday round of chemo. Jon is napping and it just struck me how I've come to enjoy the weird rythem of the IV machine that delivers his chemotherapy. Kinda stange?!

Jon gets the Doxil every other week and we are beginning to see a pattern where there is significantly more fatigue during his Doxil weeks than when he receives Taxol alone. He was tired from Thursday to Sunday and only got 2.5 workouts in last week (walking up and down Lakeland Hills only counts as a "half" workout in Jon's mind). He did however enjoy having a good UFC party Saturday night and the Superbowl on Sunday. His highpoint was having our grandaughter, Maelie, sit on his lap and watch the fights with him for over 20 minutes. It's rare for that girl to sit still longer than a few seconds!

All of Jons bloodcounts were on the low side today which would account for his increased fatigue. Dr. Chan tried again to sell him on the Nuepogeon to raise his white counts but no go. He's going to bump up his Nuetrophil Plus supplements which worked great last time. We are still struggling with trying to keep his red counts up since they directly affects his energy level which affects his workouts which tremendously influence his emotional state and attitude. Considering all the chemo he's had his counts are OK but I've called in all of my markers to try to find something that can do better. I know by now that the single most important thing we can do is keep his attitude positive.

Dr Chue paid us a visit today. I think he heard the rumor that Jon would like to attempt a return to Alaska in the spring. Instead of an OK we received a salespitch on a liver resection. Dr. Chue was surprisingly more in favor of the surgery than he's been in the past and, quite frankly, I think he sees it as the only true cure. He told us today that approximately 40% of colon cancer patients who have metastasis to the liver are cured with a liver resection once the chemo has killed the rest of the cancer throughout the colon. Those who aren't long term survivors extend their life on the average of 1-2 years. This is not typical protocol for pancreatic cancer patients but only because most of them don't live long enough for it to become an option. Jon and Dr. Chue are still working hard on making history!

So the plan is now to continue chemo through this cycle, rescan in April and if the scan is good consider liver resection surgery. We would also have to find a surgeon who would be willing to do it. Dr. Chue is putting his money on Dr. Precht who we saw for consultation last summer. With regard to the radiofrequency ablation, Dr. Chue is not optimisitc that the one large tumor in Jon's liver will ever shrink small enough with chemo to make that an option.