Wow, a non-chemo Tuesday, it's nice to have a week off! Jon's feeling a little better every day. No more back spasms, painful hands and feet or electrical heart shocks. His energy is still somewhat low and his hands have started to blister and peel. It's almost like his extemities were burned from the inside out. He's lost a little more hair and is back to the super-short crewcut he sported for Levi's wedding. Although he hasn't lifted weights yet he did manage a walk up and down the steep Lakeland Hill near our home.
No other doctor's appointments for us this week. Next Tuesday is Dr. Reilly and Darren Bunch, Thursday is the CT scan and Dr. Hart. The following week is Dr. Precht and finally Dr. Chue to develop the master plan.
Tuesday, March 4, 2008
Sunday, March 2, 2008
All The Options
Lots of people have called me lately concerned that without surgery Jon might be running out of options. Never to worry, we have been busily researching in preparation of the next stage of this journey. Surgery is certainly still an option, but we won't know more until the CT scan on the 13th. Although Dr. Hart was pessimistic about the large tumor next to the Vena Cava he did say that Jon had enough good liver left on the left lobe to do the procedure if that particular tumor had shrunk. Jon does have a few small tumors in his left lobe that the surgeon would ablate with the radiofrequency. It is a major surgery with a long and difficult recovery so its not necessarily our favorite choice but could certainly offers the best hope of a complete cure. Jon likes to say that the whole thing is like "having a rattlesnake in your sleeping bag." He cracks me up with his metaphors.
Dr Chue has presented several more options. Radioactive "seeds" placed directly in Jon's liver to kill the local cancer without affecting the rest of his body. There is also chemo that can be delivered directly into the liver through the large artery in your leg. It sounds fairly unpleasant and would require a week in the hospital in a body cast so you can't move. Somehow I just don't see Jon going for that one! It also has not had particularly great outcomes. On our last appointment Dr. Chue told us about a new medication called Lenalidomide that has been successful in treating Multiple Myeloma (a form of blood cancer) This drug increases your natural killer cells and kills the blood vessels to the tumor. It is a derivative of Thalidamide that was used in the 50s to treat women with morning sickness. Thalidamide had the unfortunate side effect of children being born without limbs because it restricted the blood flow to the fetus (also rapidly dividing cells like cancer-sorry for the disgusting comparison). This would be given in pill forms so Jon wouldn't have to have chemo pumped into him every week. The side effects seem pretty minimal compared to what we've been dealing with.
Last of all we continue with the naturopathic methods that have been successful thus far. We take classes, read books and consult every expert we can find in the area. Our friend, Bill Hutton, who lost his son Paul to testicular cancer in October, has also provided us with more diet and nutritional information this week that we will incorporate into our program.
I continue to be amazed at how Jon bounces back after these chemos. Last weekend I would have thought the guy was near death and today he is hunting coyotes with Dave Bartran. He expects to feel well enought to lift weights tomorrow. If he does have surgery, he wants to be in the best shape possible going in.
Dr Chue has presented several more options. Radioactive "seeds" placed directly in Jon's liver to kill the local cancer without affecting the rest of his body. There is also chemo that can be delivered directly into the liver through the large artery in your leg. It sounds fairly unpleasant and would require a week in the hospital in a body cast so you can't move. Somehow I just don't see Jon going for that one! It also has not had particularly great outcomes. On our last appointment Dr. Chue told us about a new medication called Lenalidomide that has been successful in treating Multiple Myeloma (a form of blood cancer) This drug increases your natural killer cells and kills the blood vessels to the tumor. It is a derivative of Thalidamide that was used in the 50s to treat women with morning sickness. Thalidamide had the unfortunate side effect of children being born without limbs because it restricted the blood flow to the fetus (also rapidly dividing cells like cancer-sorry for the disgusting comparison). This would be given in pill forms so Jon wouldn't have to have chemo pumped into him every week. The side effects seem pretty minimal compared to what we've been dealing with.
Last of all we continue with the naturopathic methods that have been successful thus far. We take classes, read books and consult every expert we can find in the area. Our friend, Bill Hutton, who lost his son Paul to testicular cancer in October, has also provided us with more diet and nutritional information this week that we will incorporate into our program.
I continue to be amazed at how Jon bounces back after these chemos. Last weekend I would have thought the guy was near death and today he is hunting coyotes with Dave Bartran. He expects to feel well enought to lift weights tomorrow. If he does have surgery, he wants to be in the best shape possible going in.
Thursday, February 28, 2008
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 :)
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 :)
Tuesday, February 26, 2008
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!
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!
Monday, February 25, 2008
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.
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.
Sunday, February 24, 2008
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.
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.
Friday, February 22, 2008
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.
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