Jon's PET scan is scheduled tomorrow at 10 am at the University of Washington. I am not sure at this point whether we will receive the results from Dr. Chue or Dr. Goswami. Either way, I would expect it to be next Tuesday since they only give results in person and we always go together. Jon swears nothing could possibly survive this last round of chemo inside his digestive system. I pray he is right.
I leave for my Tahoe fundraiser on Friday morning. I am excited, a little sad, and a little nervous. In our old life, Jon and I would always do these kinds of things together and it saddens me that he can't come along, even as a spectator. He did promise that he would do it with me next year.
Again I can't say enough about my teamates at Team In Training. Everyone of them is there because cancer has profoundly affected their lives. They are amazing, sensitive and strong individuals that offer a kind of encouragement and support I have never witnessed. We had our send off last night and our coach reminded us that when we hit all those difficult hills in Tahoe to remember what its like for a cancer patient receiving chemotherapy, if they can endure those side affects, we can endure those hills. I cried my eyes out and my team hugged me. I'm sure I'll be doing that a lot of that this weekend!
My contributions keep coming in and I so far have raised over $5000 for cancer research. It is amazing to think that only a year ago the isotope treatments weren't available for Jon and through events like this more research is made possible. Thank you to everyone who has participated through financial contributions, prayers, and kind words of support.
Wednesday, May 28, 2008
Monday, May 26, 2008
Memorial Weekend
Its been an interesting weekend around here...
Jon has finally stopped vomiting and is able to hold a few foods down. Homemade, organic chicken soup broth, jello made only with fruit juice and fresh fruits (bananas are good but blueberries make him puke, go figure??) eggs work and any kind of organic meat. Absolutely no dairy products. Diarrhea is slowing down but I wouldn't call it anywhere near normal. He is really thin and I try to continuously feed him small amounts of the foods that agree with him. He slept most of the day but made it to the couch for a movie and ate dinner with the rest of us.
I spent most of the weekend working in the yard and would just check on him every few hours. I have to admit his attitude has improved tremendously since we've seen Dr. Goswami and he's even managed a "thank you" now and again. He had the epiphany today that he may not ever need to have another chemotherapy. He's also still talking about what he's going to do with himself for work, apparently he and Paul have decided that guiding hunts in Alaska does not qualify as a "real job". I told him that I already knew that :)
Although he still feels pretty awful, I would say that this weekend he has spent a lot more time thinking about living and far less time thinking about dying. I honestly haven't seen him this postive since our first meeting with Dr. Chue.
Jon has finally stopped vomiting and is able to hold a few foods down. Homemade, organic chicken soup broth, jello made only with fruit juice and fresh fruits (bananas are good but blueberries make him puke, go figure??) eggs work and any kind of organic meat. Absolutely no dairy products. Diarrhea is slowing down but I wouldn't call it anywhere near normal. He is really thin and I try to continuously feed him small amounts of the foods that agree with him. He slept most of the day but made it to the couch for a movie and ate dinner with the rest of us.
I spent most of the weekend working in the yard and would just check on him every few hours. I have to admit his attitude has improved tremendously since we've seen Dr. Goswami and he's even managed a "thank you" now and again. He had the epiphany today that he may not ever need to have another chemotherapy. He's also still talking about what he's going to do with himself for work, apparently he and Paul have decided that guiding hunts in Alaska does not qualify as a "real job". I told him that I already knew that :)
Although he still feels pretty awful, I would say that this weekend he has spent a lot more time thinking about living and far less time thinking about dying. I honestly haven't seen him this postive since our first meeting with Dr. Chue.
Saturday, May 24, 2008
Moving Forward
The great cancer minds of Gosswami and Chue put their heads together and are moving forward with the new protocol. No more chemotherapy for now (thank, God, Jon is 166 pounds). He will have a PET scan and bloodwork this week at the University of Washington. From there Dr Gosswami will do a "mock" procedure where they trace all of Jons blood vessels to make sure that he is wired properly (hmmn??) and that all the radiation goes only to his liver. If there are any communication vessels from his liver to other organs they will need to be tied off so they are spared from the radiation. That should be done outpatient on a Thursday. If that all goes well then he will be scheduled for the actual isotopes on a Tuesday. This could all easily happen within the next 2-3 weeks.
It is hard to imagine that these two incredible doctors did not know each other and were unaware of their individual protocols. We are not only thrilled that Jon will be having the combined treatment but are excited to know that so many other patients may benefit from their joint expertise.
Dr. Chue really wants us all to be on Oprah...I promised him I would write since she only listens to women viewers :)
It is hard to imagine that these two incredible doctors did not know each other and were unaware of their individual protocols. We are not only thrilled that Jon will be having the combined treatment but are excited to know that so many other patients may benefit from their joint expertise.
Dr. Chue really wants us all to be on Oprah...I promised him I would write since she only listens to women viewers :)
Wednesday, May 21, 2008
Goswami Rocks
Our visit with Dr.Goswami at the UW went better that we could have possibly hoped or imagined!
When I send Jons scans and records to the cancer centers around the country I always include the picture of him at his one year diagnosis mark where he just finished working out and is flexing his biceps...its been on the blog so I will spare you all from seeing it again but, needless to say, it is impressive for any pancreatic cancer patient post-one-year-diagnosis. Naturally, I included in the records to the UW Cancer Center and the first thing Dr. Goswami did was shake Jon's hand and tell him it was a pleasure to meet the man in the picture. Jon replied, "That guys still in here."
Dr. Goswami asked Jon to tell the story of his cancer journey which Jon did quite colorfully. Afterward, Dr. Goswami explained all the details of the procedure and told us that Jon was an excellent candidate. UW has only been doing this procedure for 9 months and have done 12 patients (with metastatic colon cancer and primary liver cancer) with excellent results. They all currently have clear scans, the only caveat is that the procedure is so new they don't know how long it lasts. Jon will be their first pancreatic cancer patient. He further went on to tell us that the small spot in Jon's lung could also be readily ablated with a separate procedure should this round of chemo not stabilize or eradicate it. Next Dr. Goswami will call Dr. Chue and they will formulate a schedule of treatment for the next few months. Hopefully, Jon will have had his last chemo this past Tuesday and we will schedule a PET scan next week.
In addition to being remarkably skilled and intelligent, Dr. Goswami has an excellent bedside manner. He is warm, caring and kind of reminds me of Deepak Chopra. At the end of our visit Jon asked if he could kiss him now or wait until after the procedure :)
Next there are scans, blood tests, arterialgrams before we can have the actual procedure. It will also be done in 2 parts, 30 days apart to treat each lobe of the liver separately. Jon won't know if he is an official candidate until all the tests are complete, but there is a 95% chance that he is.
Interestingly enough the Ytrium Isotopes are manufactured in Australia, home of our friends Ray and Leonie. They have such a short half-life that they are shipped the day of the procedure to the UW for each individual patients. The Ytrium alone is $16,000and thankfully the procedure is covered by my health insurance.
I have been ecstatic all day. I asked Jon if he wanted to dance the jig. He replied that he was doing one in his head :)
When I send Jons scans and records to the cancer centers around the country I always include the picture of him at his one year diagnosis mark where he just finished working out and is flexing his biceps...its been on the blog so I will spare you all from seeing it again but, needless to say, it is impressive for any pancreatic cancer patient post-one-year-diagnosis. Naturally, I included in the records to the UW Cancer Center and the first thing Dr. Goswami did was shake Jon's hand and tell him it was a pleasure to meet the man in the picture. Jon replied, "That guys still in here."
Dr. Goswami asked Jon to tell the story of his cancer journey which Jon did quite colorfully. Afterward, Dr. Goswami explained all the details of the procedure and told us that Jon was an excellent candidate. UW has only been doing this procedure for 9 months and have done 12 patients (with metastatic colon cancer and primary liver cancer) with excellent results. They all currently have clear scans, the only caveat is that the procedure is so new they don't know how long it lasts. Jon will be their first pancreatic cancer patient. He further went on to tell us that the small spot in Jon's lung could also be readily ablated with a separate procedure should this round of chemo not stabilize or eradicate it. Next Dr. Goswami will call Dr. Chue and they will formulate a schedule of treatment for the next few months. Hopefully, Jon will have had his last chemo this past Tuesday and we will schedule a PET scan next week.
In addition to being remarkably skilled and intelligent, Dr. Goswami has an excellent bedside manner. He is warm, caring and kind of reminds me of Deepak Chopra. At the end of our visit Jon asked if he could kiss him now or wait until after the procedure :)
Next there are scans, blood tests, arterialgrams before we can have the actual procedure. It will also be done in 2 parts, 30 days apart to treat each lobe of the liver separately. Jon won't know if he is an official candidate until all the tests are complete, but there is a 95% chance that he is.
Interestingly enough the Ytrium Isotopes are manufactured in Australia, home of our friends Ray and Leonie. They have such a short half-life that they are shipped the day of the procedure to the UW for each individual patients. The Ytrium alone is $16,000and thankfully the procedure is covered by my health insurance.
I have been ecstatic all day. I asked Jon if he wanted to dance the jig. He replied that he was doing one in his head :)
Tuesday, May 20, 2008
We were fortunate today to have one of Jon's Alaska hunting guide buddies, Paul, accompany us to chemo. It really good for Jon to stay connected to his "old life" and it did him a world of good to have some guy time. Last night, we had dinner with his friend, Travis, who was here on business and over the weekend he camped with Levi in his new camper trailer. An outstanding few days for a guy that's been stuck on the couch for months.
His blood work is complete crap...platelets in the double digits and a hematocrit of 24. Tomorrow is our appointment with Dr. Goswami at the University of Washington and I looking forward to scheduling a PET scan and having the SIRT. It appears that Jon needs two weeks off of chemo before moving forward with this new procedure so that should put him in the first week of June if he calls it quits at #9/12 with Dr. Chue's blessing.
More tomorrow after the big appointment.
His blood work is complete crap...platelets in the double digits and a hematocrit of 24. Tomorrow is our appointment with Dr. Goswami at the University of Washington and I looking forward to scheduling a PET scan and having the SIRT. It appears that Jon needs two weeks off of chemo before moving forward with this new procedure so that should put him in the first week of June if he calls it quits at #9/12 with Dr. Chue's blessing.
More tomorrow after the big appointment.
Thursday, May 15, 2008
Well I have to say Jon has been a pretty pessimistic guy these last few months. He says it's hard to be positive and optimistic when you feel like shit all of the time :(. I can appreciate his perspective. However, in the last few days I have seen glimpses of the Old Jon. I think he's inspired by the small drop in his tumor marker and all the positive feedback we've received on the isotopes. At lunch on Tuesday he said he needed to figure out what he was going to do for a living once he was better...guiding in Alaska or maybe back to remodeling houses. Then he inquired how much longer until I retired cause he wanted to plan accordingly (the answer is forever, just take more vacations!) Today he reminded me that the Old Jon was still in there...sometimes that's hard to remember.
He still feels crappy and sleeps most of the time. I continue to lobby for the cessation of chemo until we can have the isotopes. He might just say uncle after this week. I am extremely excited about our appointment at the UW next Wednesday!
He still feels crappy and sleeps most of the time. I continue to lobby for the cessation of chemo until we can have the isotopes. He might just say uncle after this week. I am extremely excited about our appointment at the UW next Wednesday!
Sunday, May 11, 2008
More Isotope Stuff
This article appeared on our local news last week featuring the doctor that will perform Jon's Selective Internal Radiation Therapy. We see him on May 21.
New liver cancer treatment offers patients hope
09:29 AM PDT on Thursday, May 8, 2008
By JEAN ENERSEN / KING 5 News
SEATTLE - When hiker Conway Leovy found out his colon cancer had spread to his liver a second time, the last thing he wanted was chemotherapy.
"One of my criteria was I wanted to be able to live well, as well as I can with cancer," he said.
Unfortunately, Leovy's scan revealed too many tumors to operate or to use radio frequency ablation.
As for standard radiation treatment, Dr. Gaurav Goswami said it's far too dangerous for liver tumors.
"The dose of radiation that would be needed to destroy the tumor would actually end up destroying the entire liver," he said.
In the past, Leovy would have run out of options. But now doctors at the University of Washington have another way to attack liver tumors. It's targeted radiation, using microspheres, one-third the width of a human hair.
"What this procedure does is that it gives us an ability to deliver radiation to the tumor while sparing the normal surrounding liver," said Dr. Goswami.
Through a catheter, the microspheres are injected into the artery leading to the liver, where they travel through the bloodstream, seeking out tumors.
"These radiation particles emit radiation within the tumor and destroy the tumor," said Dr. Goswami.
As a safety precaution, only one lobe of the liver is treated at a time.
Leovy's latest scan was clear.
"In Mr Leovy's case, we do not any evidence of any active tumor," said Dr. Goswami.
"The whole time I felt really well, I feel well now and I'm encouraged that I will have more time to feel well," said Leovy.
Doctors say the treatment isn't suitable for every patient. It just offers one more way to fight cancerous liver tumors.
New liver cancer treatment offers patients hope
09:29 AM PDT on Thursday, May 8, 2008
By JEAN ENERSEN / KING 5 News
SEATTLE - When hiker Conway Leovy found out his colon cancer had spread to his liver a second time, the last thing he wanted was chemotherapy.
"One of my criteria was I wanted to be able to live well, as well as I can with cancer," he said.
Unfortunately, Leovy's scan revealed too many tumors to operate or to use radio frequency ablation.
As for standard radiation treatment, Dr. Gaurav Goswami said it's far too dangerous for liver tumors.
"The dose of radiation that would be needed to destroy the tumor would actually end up destroying the entire liver," he said.
In the past, Leovy would have run out of options. But now doctors at the University of Washington have another way to attack liver tumors. It's targeted radiation, using microspheres, one-third the width of a human hair.
"What this procedure does is that it gives us an ability to deliver radiation to the tumor while sparing the normal surrounding liver," said Dr. Goswami.
Through a catheter, the microspheres are injected into the artery leading to the liver, where they travel through the bloodstream, seeking out tumors.
"These radiation particles emit radiation within the tumor and destroy the tumor," said Dr. Goswami.
As a safety precaution, only one lobe of the liver is treated at a time.
Leovy's latest scan was clear.
"In Mr Leovy's case, we do not any evidence of any active tumor," said Dr. Goswami.
"The whole time I felt really well, I feel well now and I'm encouraged that I will have more time to feel well," said Leovy.
Doctors say the treatment isn't suitable for every patient. It just offers one more way to fight cancerous liver tumors.
Thursday, May 8, 2008
Tuesday, May 6, 2008
I just had a long conversation with Dr. Chue about Jon's treatments. Jon has experienced nearly constant diarrhea the past 24 hours and is having difficulty tolerating this chemotherapy. He's lost about 10 pounds and is not able to eat very much due to nausea and stomach pain. As a result, Dr. Chue decreased the dosage of chemotherapy to alleviate some of the side effects while hopefully maintaining the effectiveness. We discussed the pros and cons of the SIRT and Dr. Chue's biggest concern in the spot that was seen in the right lung that has increased in size since the last scan. For the past 18 months it was thought to be a scar of some kind but since it has increased in size Dr. Chue is certain that it is indeed cancer. He wants Jon to complete as many of the current chemotherapies as possible to insure shrinkage or eradication of the tumor in the lung before we proceed with any localized treatment to the liver. Although the SIRT is considered minimally invasive it will make Jon sick for a period of time due to the by-products of tumor death and liver tissue necrosis. As a result there will be a recovery period where Jon will not be able to receive chemotherapy which could allow any cancer in the lung to spread even though the cancer in the liver would be diminished.
So here is the master plan...Today is chemo number 7 of 12. Dr. Chue would like Jon to have 8-10 sessions if he can tolerate it safely. We will rescan at that time and hope/pray for elimination of the lung tumor. We have an appointment at UW on May 21 for the SIRT which should coincide with chemo number 9. If all looks good he will move forward with the SIRT to kill as much of the cancer in the liver as they can. Once he recovers from that procedure he will resume chemotherapy to eliminate any remaining cancer. Jon will need some recovery time from chemo to get his blood counts to a safe place for the SIRT so we don't know exactly when it will be scheduled. Everything really hinges on the results of the next scan which should be sometime near the end of May.
So here is the master plan...Today is chemo number 7 of 12. Dr. Chue would like Jon to have 8-10 sessions if he can tolerate it safely. We will rescan at that time and hope/pray for elimination of the lung tumor. We have an appointment at UW on May 21 for the SIRT which should coincide with chemo number 9. If all looks good he will move forward with the SIRT to kill as much of the cancer in the liver as they can. Once he recovers from that procedure he will resume chemotherapy to eliminate any remaining cancer. Jon will need some recovery time from chemo to get his blood counts to a safe place for the SIRT so we don't know exactly when it will be scheduled. Everything really hinges on the results of the next scan which should be sometime near the end of May.
Thursday, May 1, 2008
We have an appointment at the University of Washington on May 21 to meet with the radiation oncologist and schedule Jon's Selective Internal Radiation Therapy. Frankly, I'm unhappy (ok really pissed off!) that we're waiting so long. Jon has decided that he wants to attempt to complete all 12 chemotherapies before he schedules the procedure and I completely disagree, I think we should schedule it as soon as possible. His tumor markers are on the rise while his blood and platelet counts continue to drop. I am concerned that if he waits too long and continues with this treatments that he will be too weak for the SIRT. He can always start chemo again once the tumor is debulked. However, when its all said and done it is his choice, not mine.
On a brighter note, Staci and Octavio have been here for an extended visit since last Friday. It's been really nice having them and I appreciate all the companionship and support.
Elizabeth if feeling good, back to both school and work. Kelsey is loving his new found freedom with his drivers license and truck. It's a huge help to me for him to be able to drive to all his stuff.
I am still training as best I can for my upcoming bike ride. Thanks to everyone for your support and encouragement. Although I haven't been able to make all my team rides, the opportunities I do get to cycle continue to maintain my sanity.
On a brighter note, Staci and Octavio have been here for an extended visit since last Friday. It's been really nice having them and I appreciate all the companionship and support.
Elizabeth if feeling good, back to both school and work. Kelsey is loving his new found freedom with his drivers license and truck. It's a huge help to me for him to be able to drive to all his stuff.
I am still training as best I can for my upcoming bike ride. Thanks to everyone for your support and encouragement. Although I haven't been able to make all my team rides, the opportunities I do get to cycle continue to maintain my sanity.
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