We saw the surgeon today and like most of the MDs (with the exception of Dr. Chue), his first reaction was "you realize you are dealing with pancreatic cancer, right? After reviewing all of the reports and scans he finally realized that we weren't crazy, just extremely well-informed, motivated, and still alive. Once we pursuaded him to our way of thinking he ordered another CT scan to clarify our options. To his credit, he made one phone call and we were in and out of radiology within an hour. We expect the results on Thursday so please keep those prayer coming!!
So hears the deal...The largest tumor in the liver abutts the Superior Vena Cava, a major vein in the thorax that supplies the heart, lungs, and all the major organs. If the tumor has not shrunk away from that vein then any kind of surgery is too risky right now. That means another round of chemo before the ablation is even possible. If this CT scan confirms that there is no longer cancer in the pancreas and the liver tumors have shrunk in the right direction then we all agree that the radio frequency ablation is the way to go. We also agree that a liver resection and removal of any part of the pancreas is far too risky. Either way Jon will have at least one more round of chemo.
He's feeling pretty decent today. His nose still bleeds and his toes and fingers hurt but his energy level is increasing and he actually looks pretty good. Yesterday he managed to shovel some beauty bark at his last foreclosure house. We are going to attempt Mt. Peak tomorrow and have everyone over for the barbq. I am excited that he will be out of bed and able to participate in the festivities. Attending Riley's wedding was a huge boost. We had a wonderful time and although he slept in the car most of the ride down and back he was able to fully participate in all of the festivities. It was a beautiful wedding on top of their 40 acre mountain home, complete with a log cabin built from the trees on their property. For any of you that remember Nancy and Gary Hudson, we were honored to accompany Nancy on this trip.
So, the saga continues. We are praying for the ablation, one more round of chemo and then a complete cure. It all feel completely within our grasp with a little more perseverance and fortitude.
Tuesday, July 3, 2007
Thursday, June 28, 2007
More Stuff
So I've been studying the PET scan results and reading up on radiofrequency ablation. A couple of pieces of good news...When Jon had his first PET scan the largest tumors were almost 14cm at the widest part and had an SUV(intensity of tumor activity) of 8.9. In the most recent report it measures 9.6cm at its widest part and an SUV of 2.7. The reduction in the SUV is as significant as the reduction in size. It measures the tumor dying rather than growing. If you recall, all the small tumors are gone and that makes him a possible candidate for radiofrequency ablation. This procedure is done under local anesthesia on an outpatient basis. It would be very similar to the liver biopsy where they would penetrate the skin with the needle, guided by an ultrasound or CT scan. Once they made contact with the tumor they would "burn it out" with radio waves. They can cover and area of 3cm by 7cm in one burn, however, larger tumors have been ablated with two burns. This procedure would be much less invasive then a liver resection which is major surgery, wherein they remove your liver, cut out all the tumors and put it back. They could also take the affected lymph nodes during that procedure. As the lymph nodes are "stable" and the pancreas looks normal we are strongly leaning toward the ablation. The question will be if the surgeon feels he can ablate the tumor that is somewhat larger than the optimum candidate and if the lymph nodes and pancreas stable enough to not need removing. I would expect that one more round of chemo would ensure that the cancer is dead in those parts.
Jon told me today that there is no way he will take Oxyplatin again. That was the main chemotherapy agent in his last cocktail. Dr. Chue was somewhat reluctant to use Gemzar again so soon but that may be our best option, incorporating the one week breaks every four weeks to give Jon some recovery time.
Jon's feeling better every day. He was up and about all day and is just resting on the couch without a nap this evening. He won't let me give him any Interferon yet. I'll give him until Monday, then he gets it whether he wants it or not :)
We are also researching a pancreatic cancer vaccine developed at the University of Pittsburgh. My piano instructor sent us an article about it that we will give to Dr. Chue for his opinion.
We are excited to see the surgeon on Tuesday!
Kelsey and Jon found the cutest baby bunny in our yard today. Its about 4 inches long by 5 inches high. Kelsey is feeding it kitten formula with an eyedropper. We are going to try to rescue it and set it free when its big enough to survive on its own.
Jon told me today that there is no way he will take Oxyplatin again. That was the main chemotherapy agent in his last cocktail. Dr. Chue was somewhat reluctant to use Gemzar again so soon but that may be our best option, incorporating the one week breaks every four weeks to give Jon some recovery time.
Jon's feeling better every day. He was up and about all day and is just resting on the couch without a nap this evening. He won't let me give him any Interferon yet. I'll give him until Monday, then he gets it whether he wants it or not :)
We are also researching a pancreatic cancer vaccine developed at the University of Pittsburgh. My piano instructor sent us an article about it that we will give to Dr. Chue for his opinion.
We are excited to see the surgeon on Tuesday!
Kelsey and Jon found the cutest baby bunny in our yard today. Its about 4 inches long by 5 inches high. Kelsey is feeding it kitten formula with an eyedropper. We are going to try to rescue it and set it free when its big enough to survive on its own.
Wednesday, June 27, 2007
Surgical Consult
We have an appointment with Dr. Andrew Precht at Swedish Hospital in Seattle on Tuesday, July 3 at 1:30 pm. I tried to get in on Thursday but he couldn't see us because he will be busy climbing Mt. Ranier :). Jon really liked that-he figures if anyone is going to cut on him he should at least be able to climb a major mountain peak!
Jon's doing a little better today. He saw Mary Jane Mack this morning for a nutritional evaluation and some major light therapy. He felt good enough to meet me for lunch and run a few errands. This is the longest he's been out of bed for a week. We expect him to be stronger everyday and enjoy his month off of treatment.
We are leaving for Oregon on Friday to attend our friends Riley and Stephanie's wedding. Martin and Valerie will also be getting married this Saturday but since one is in Montana and one in Oregon we had to pick the one who invited us first. You might remember Martin from our barn party the night before our wedding. He entertained all of us with his singing and guitar music. Levi and Kelsey are leaving for five days of jeeping in Naches. Everyone should be home in time to celebrate Independence Day with our usual tradition of fireworks on the lake. Please guys, no shooting bottle rockets at each other this year!!!!
Jon's doing a little better today. He saw Mary Jane Mack this morning for a nutritional evaluation and some major light therapy. He felt good enough to meet me for lunch and run a few errands. This is the longest he's been out of bed for a week. We expect him to be stronger everyday and enjoy his month off of treatment.
We are leaving for Oregon on Friday to attend our friends Riley and Stephanie's wedding. Martin and Valerie will also be getting married this Saturday but since one is in Montana and one in Oregon we had to pick the one who invited us first. You might remember Martin from our barn party the night before our wedding. He entertained all of us with his singing and guitar music. Levi and Kelsey are leaving for five days of jeeping in Naches. Everyone should be home in time to celebrate Independence Day with our usual tradition of fireworks on the lake. Please guys, no shooting bottle rockets at each other this year!!!!
Tuesday, June 26, 2007
PET SCAN RESULTS
We met with Dr. Chue for the PET scan results at 9:15 this morning. The tumor in Jon's lung is gone as well as the "too numerous to count" tumors in his liver. The lymph nodes in the liver/pancreas area are called "stable" in the report. That means that they have been reduced in size and no longer "light up" in the PET scan, indicating that they are no longer malignant. What remains are two tumors in his liver which have been reduced in size and may be amenable to surgery. The report also stated that the head of the pancreas was enlarged, but reduced in size from the last PET scan. We all found that strange since the original PET scan did not comment on the pancreas and all other scans called the pancreas normal. We hypothesize that the pancreas may have been enlarged at the original site of the tumor but since they had no basis for comparison in the first report they were not aware of it until they were able to compare it to the currently reduced size. This confirms that the original diagnosis of pancreatic cancer was, indeed, correct. (remember that the original liver biopsy was inconclusive) Dr. Liao and Dr. Chue were excellent diagnosticians from the beginning.
The next step is to consult a surgeon recommended by Dr. Chue. We need to determine if Jon is a candidate for liver resection or radiofrequency ablation. It is possible that he could have surgery to remove the rest of the tumors. If they are still considered too large then we need to proceed with a third round of intravenous chemo and then potentially the surgery after that cycle. There is always the possibility that the next chemo could obliterate the last of the tumors. I will call the surgeon tomorrow to schedule an appointment.
Jon is pretty wiped out. He isn't too excited about having surgery but is open to the possibility if they can remove the liver tumor without having to address the pancreas. Dr. Chue would like the surgeon to biopsy the enlarged portion of the pancreas during surgery. Jon is adamantly opposed to removing his pancreas. It might be best to do one more round of chemo to shrink the remaining tumors and then opt for the radiofrequency ablation which is much less invasive than a liver resection. We will know more once we see the surgeon (who Dr. Chue calls "a cowboy"!)
Jon will start on Interferon tomorrow and is holding off on Tarceva until we see the surgeon. Dr. Chue is planning on giving him a month off to recover before initiating the next chemo cycle, if needed. He also informed us that Aaron (poster child for pancreatic cancer) was unable to tolerate the consecutive chemos for twelve weeks like Jon had, so they did four weeks on, one week off, for three cycles. He felt that Jon could repeat that process so that he is well enough for both Levi and Erikas wedding on Sept 15 and Staci and Octavios wedding on October 20th.
All in all the news is good. We were hoping for a complete remission but under the circumstances we were probably a little overly optimistic. I am grateful for Jon to have a month off, this last month has been really hard on him. The last thing Dr. Chue said before we left was "Jon, a cycle of chemo, then a surgery, then you are going to make history". You can't ask for more than that!
The next step is to consult a surgeon recommended by Dr. Chue. We need to determine if Jon is a candidate for liver resection or radiofrequency ablation. It is possible that he could have surgery to remove the rest of the tumors. If they are still considered too large then we need to proceed with a third round of intravenous chemo and then potentially the surgery after that cycle. There is always the possibility that the next chemo could obliterate the last of the tumors. I will call the surgeon tomorrow to schedule an appointment.
Jon is pretty wiped out. He isn't too excited about having surgery but is open to the possibility if they can remove the liver tumor without having to address the pancreas. Dr. Chue would like the surgeon to biopsy the enlarged portion of the pancreas during surgery. Jon is adamantly opposed to removing his pancreas. It might be best to do one more round of chemo to shrink the remaining tumors and then opt for the radiofrequency ablation which is much less invasive than a liver resection. We will know more once we see the surgeon (who Dr. Chue calls "a cowboy"!)
Jon will start on Interferon tomorrow and is holding off on Tarceva until we see the surgeon. Dr. Chue is planning on giving him a month off to recover before initiating the next chemo cycle, if needed. He also informed us that Aaron (poster child for pancreatic cancer) was unable to tolerate the consecutive chemos for twelve weeks like Jon had, so they did four weeks on, one week off, for three cycles. He felt that Jon could repeat that process so that he is well enough for both Levi and Erikas wedding on Sept 15 and Staci and Octavios wedding on October 20th.
All in all the news is good. We were hoping for a complete remission but under the circumstances we were probably a little overly optimistic. I am grateful for Jon to have a month off, this last month has been really hard on him. The last thing Dr. Chue said before we left was "Jon, a cycle of chemo, then a surgery, then you are going to make history". You can't ask for more than that!
Sunday, June 24, 2007
Saturday, June 23, 2007
HAPPY NEWS!!!!!!
Hi everyone! This is Staci writing...I flew up on Wednesday night with my boyfriend Octavio. Last night we all went to the big Mariners/Reds game (the first time Ken Griffey Jr. has played in Seattle since he left about 8 years ago). Octavio, Kelsey, & I spent the whole day in Seattle being tourist-y. During the 6th inning (Mariners were losing 15-1), Octavio got down on his knee and held a peach (yes, a peach) out to me. It was cut in half and pitted. Inside was a ring!!!! He asked me to marry him, and, after the shock wore off a second later, I SAID YES!!!!
(When Octavio & I first met , he had a dream that the devil was chasing him. Everyone was using guns & bombs to fight off the devil, but it wasn't working. Someone told him peaches were the only way to get rid of the devil. So he frantically searched for a peach tree, a can of peaches, anything...then he woke up. When he told me about the dream, I said I wanted to be his peach! I had totally forgotten the whole thing until last night :-)
So last night, I called Levi & told him the news...he had purchased a ring for his his girlfriend Ericka a few days prior. He decided he couldn't let Octavio steal his thunder, so he went in the garage and started making some noise to distract Ericka. He was planning to put on some romantic music but something wasn't working, so he started messing around with the fuse box....and accidentally turned off the power for the whole house. So he walked in the dark house with a candle and proposed in the dark!
Ericka & I haven't stopped smiling ever since!!! She told me her face hurt. I told her my teeth were dry.
As for the old Dad, apparently he's been having daily nose bleeds. He told me he gets them mostly at night. They are due to the chemo. There is blood on his sheets and pillow case and lamp shade and night stand :-( This morning Octavio made breakfast in bed for the family, & I noticed Dad's nose was all crusted over with dried blood. And the floor was littered with bloody Kleenex and handkerchiefs. Other than that, Dad's face is really red (like Rosacea). It looks like he has broken blood vessels all over his cheek area. Ericka (a nurse) says it is from the steroids they give him during chemo. And, I've noticed also Dad's eyes look dried out like there is a film over them. They seem to bug out a little. Ericka says that is also from the steroids. So, there is all the Dad news for those of us who don't get to see him every day.
HAPPY FIRST BIRTHDAY MAELIE!!!!
(When Octavio & I first met , he had a dream that the devil was chasing him. Everyone was using guns & bombs to fight off the devil, but it wasn't working. Someone told him peaches were the only way to get rid of the devil. So he frantically searched for a peach tree, a can of peaches, anything...then he woke up. When he told me about the dream, I said I wanted to be his peach! I had totally forgotten the whole thing until last night :-)
So last night, I called Levi & told him the news...he had purchased a ring for his his girlfriend Ericka a few days prior. He decided he couldn't let Octavio steal his thunder, so he went in the garage and started making some noise to distract Ericka. He was planning to put on some romantic music but something wasn't working, so he started messing around with the fuse box....and accidentally turned off the power for the whole house. So he walked in the dark house with a candle and proposed in the dark!
Ericka & I haven't stopped smiling ever since!!! She told me her face hurt. I told her my teeth were dry.
As for the old Dad, apparently he's been having daily nose bleeds. He told me he gets them mostly at night. They are due to the chemo. There is blood on his sheets and pillow case and lamp shade and night stand :-( This morning Octavio made breakfast in bed for the family, & I noticed Dad's nose was all crusted over with dried blood. And the floor was littered with bloody Kleenex and handkerchiefs. Other than that, Dad's face is really red (like Rosacea). It looks like he has broken blood vessels all over his cheek area. Ericka (a nurse) says it is from the steroids they give him during chemo. And, I've noticed also Dad's eyes look dried out like there is a film over them. They seem to bug out a little. Ericka says that is also from the steroids. So, there is all the Dad news for those of us who don't get to see him every day.
HAPPY FIRST BIRTHDAY MAELIE!!!!
Friday, June 22, 2007
PET SCAN TODAY
Jon had the PET scan at 7:00am this morning. Although we are tempted to have the results faxed to my office we are awaiting our appointment with Dr. Chue on Tuesday. It is his policy to only review scan results in person and we want to respect the "Chue Master"
Although Jon remains tired and his stomach still hurts he is in excellent spirits with the possibility of being at the end of this road. We are both optimistic about the results of the scan and all of our future plans. His first goal is, of course, to go backpacking. He's had a lot of neuropathy in his hands and feet this month (another chemo side effect) and needs to get the swelling down so he can put on his hiking boots! He worked a few hours today (ok, really he slept in the truck while Kyle did most of the work) and he's home napping right now in hopes of meeting Staci, Octavio, Kelsey, and myself at the Mariners game tonight.
Tomorrow is a family barbq for everyone to meet Stacis' beau, Octavio. We have enjoyed our time with both of them and they are graciously creating a Mexican Feast for the family. I would have to say that Staci is happier than I have ever seen her!
Although Jon remains tired and his stomach still hurts he is in excellent spirits with the possibility of being at the end of this road. We are both optimistic about the results of the scan and all of our future plans. His first goal is, of course, to go backpacking. He's had a lot of neuropathy in his hands and feet this month (another chemo side effect) and needs to get the swelling down so he can put on his hiking boots! He worked a few hours today (ok, really he slept in the truck while Kyle did most of the work) and he's home napping right now in hopes of meeting Staci, Octavio, Kelsey, and myself at the Mariners game tonight.
Tomorrow is a family barbq for everyone to meet Stacis' beau, Octavio. We have enjoyed our time with both of them and they are graciously creating a Mexican Feast for the family. I would have to say that Staci is happier than I have ever seen her!
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