We are going into the 6th and final week of scheduled chemo - yay! Unfortunately the tenderness of his gums and soft palate are making eating particularly difficult, and foods like tortilla ships (sharp) and V8 (acidic) are out of the question.
Two days ago Juan had a PET scan and on Monday he'll have a CT scan. On Thursday we meet with the doctor to discuss how successful the chemo has been so far, and what the next step should be. It is possible that they will recommend more chemo-only as he is currently receiving, or they might change to a chemo + radiation combo, or just radiation by itself. Of course, the end-goal is to shrink the tumor enough to perform surgery - but that decision is still quite a ways off.
We have become Netflicks worst nightmare, averaging one movie every 1-2 days. But we've seen some fun and interesting flicks. Recent highlights include Rabbit Proof Fence and True Romance (the latter is an early Tarantino script).
Friday, April 10, 2009
Saturday, March 21, 2009
The First Side-Effect
Unfortunately, Juan has developed his first side-effect from chemo: canker sores. On the bright side though, the pharmacist gave him a concoction of lidocaine and maalox that works miracles. And on the brighter side, still no other side-effects.
Yesterday Marcia won a Deschutes River drifting fly fishing trip at the annual Rotary Club Auction - Juan is very excited and hopes to go during steelhead season. And today we attended a Shinto house blessing - very interesting.
Next Thursday (in 5 days) we will finish the first round of chemo and start round two.
Yesterday Marcia won a Deschutes River drifting fly fishing trip at the annual Rotary Club Auction - Juan is very excited and hopes to go during steelhead season. And today we attended a Shinto house blessing - very interesting.
Next Thursday (in 5 days) we will finish the first round of chemo and start round two.
Friday, March 13, 2009
Chemo continues - so far so good
Sorry for the delay in updates - it has been pure laziness on my part.
Juan continues to do amazingly well, exceeding all hopes/expectations for side-effects. To date he has experienced _no_ obvious ill effects from the chemo treatments. We finished the first continual-dose cartridge on Thursday and had it replaced with a new one for this week. We are starting to know the nurses at the oncology clinic in Portland - so far they have all been both pleasant and competent.
Over the past few days Juan has enjoyed hearty lunches thanks to all the generous gift certificates we have received. We continue to be overwhelmed with freshly-made dinner meals as well. Juan has also found time to spend in the shop to finish current projects and contemplate some new ideas.
Juan continues to do amazingly well, exceeding all hopes/expectations for side-effects. To date he has experienced _no_ obvious ill effects from the chemo treatments. We finished the first continual-dose cartridge on Thursday and had it replaced with a new one for this week. We are starting to know the nurses at the oncology clinic in Portland - so far they have all been both pleasant and competent.
Over the past few days Juan has enjoyed hearty lunches thanks to all the generous gift certificates we have received. We continue to be overwhelmed with freshly-made dinner meals as well. Juan has also found time to spend in the shop to finish current projects and contemplate some new ideas.
Thursday, March 5, 2009
The First day of Chemo
Well, Juan has survived his first day of chemo...but I'll start with yesterday.
Yesterday (Wednesday) we had the PICC [peripherally inserted central catheter] line placed. This is essentially a semi-permanent IV that goes into the upper arm and then follows the veins down to right above the heart. Chemo used to be inserted directly into a normal arm IV, but patients often found that the medicines would burn all the way up the arm. The advantage of the PICC line is that it drops the chemicals where the blood flow is turbulent and fast, thus diluting the chemicals very quickly.
The procedure is rather interesting and we had a nurse (Klaus) who claimed that he still found the whole thing fascinating despite having performed it thousands of times before. The insertion is treated like surgery, using only brand new tools for the sake of sterility. I (Amanda) got to stay in the room and watch/read. They started in the right arm, and got the initial insertion tube in, but found that the guide wire was catching on something. Watching them put the line in and out twice, trying to make it work, was when I had to leave the room and sit on the floor outside for a few minutes. So, they had to throw everything away: the gown, the tools, the tubes, the paper sheets, even the pair of scissors they had used (just once mind you). Then everything was resterilized, all new equipment delivered, and a second attempt begun on the left arm. Fortunately, this time the procedure went off without a hitch and we were home before noon.
Today, again, we had to be at the hospital early for the start of chemo. We all noticed right away that Kaiser takes special care with its oncology waiting rooms. They had a rocking chair, tables, puzzles for people to work on, and more comfortable seating than usual. The chemotherapy waiting rooms are even nicer: couches, large floor pillows, a library of oncology/treatment/self-help/survivor/spiritual/well-being books, CDs, DVDs, and a teddy bear. The doctor informed us that we would only be doing two chemo drugs for now instead of three. The explanation is a little long, and not very important to this blog, but the decision was satisfactorily justified to all three of us.
This time (I think because it was his first time), Juan was given a little private room where both mom and I could hang out whenever we liked. Strangely, although Juan could eat to his heart's content in his room, we could not....we have yet to figure out the reason for this, though a few theories have come to mind. Juan had to go through three 2-hour IV drips. The first was a saline solution combined with anti-nausea drugs. The second contained the chemo drugs. And finally a simple saline solution.
The second drug is to be delivered slowly and continuously over the next three weeks via a little pump that Juan wears on his belt. It's very quiet and surprisingly unobtrusive...so far. This means that we have to go in only once a week to get the pump refilled - a much simpler and more pleasant schedule and experience than we had expected. After three weeks the whole process starts again.
Juan has said that so far he feels no side-effects. However, the doctors warned that (like working out at the gym) it's not likely to hit you for about 2 days. I suppose we will see then what kind of experience he's in for for the next couple of months.
As we must all get up very early tomorrow: TTFN.
Yesterday (Wednesday) we had the PICC [peripherally inserted central catheter] line placed. This is essentially a semi-permanent IV that goes into the upper arm and then follows the veins down to right above the heart. Chemo used to be inserted directly into a normal arm IV, but patients often found that the medicines would burn all the way up the arm. The advantage of the PICC line is that it drops the chemicals where the blood flow is turbulent and fast, thus diluting the chemicals very quickly.
The procedure is rather interesting and we had a nurse (Klaus) who claimed that he still found the whole thing fascinating despite having performed it thousands of times before. The insertion is treated like surgery, using only brand new tools for the sake of sterility. I (Amanda) got to stay in the room and watch/read. They started in the right arm, and got the initial insertion tube in, but found that the guide wire was catching on something. Watching them put the line in and out twice, trying to make it work, was when I had to leave the room and sit on the floor outside for a few minutes. So, they had to throw everything away: the gown, the tools, the tubes, the paper sheets, even the pair of scissors they had used (just once mind you). Then everything was resterilized, all new equipment delivered, and a second attempt begun on the left arm. Fortunately, this time the procedure went off without a hitch and we were home before noon.
Today, again, we had to be at the hospital early for the start of chemo. We all noticed right away that Kaiser takes special care with its oncology waiting rooms. They had a rocking chair, tables, puzzles for people to work on, and more comfortable seating than usual. The chemotherapy waiting rooms are even nicer: couches, large floor pillows, a library of oncology/treatment/self-help/survivor/spiritual/well-being books, CDs, DVDs, and a teddy bear. The doctor informed us that we would only be doing two chemo drugs for now instead of three. The explanation is a little long, and not very important to this blog, but the decision was satisfactorily justified to all three of us.
This time (I think because it was his first time), Juan was given a little private room where both mom and I could hang out whenever we liked. Strangely, although Juan could eat to his heart's content in his room, we could not....we have yet to figure out the reason for this, though a few theories have come to mind. Juan had to go through three 2-hour IV drips. The first was a saline solution combined with anti-nausea drugs. The second contained the chemo drugs. And finally a simple saline solution.
The second drug is to be delivered slowly and continuously over the next three weeks via a little pump that Juan wears on his belt. It's very quiet and surprisingly unobtrusive...so far. This means that we have to go in only once a week to get the pump refilled - a much simpler and more pleasant schedule and experience than we had expected. After three weeks the whole process starts again.
Juan has said that so far he feels no side-effects. However, the doctors warned that (like working out at the gym) it's not likely to hit you for about 2 days. I suppose we will see then what kind of experience he's in for for the next couple of months.
As we must all get up very early tomorrow: TTFN.
Wednesday, February 25, 2009
Recovery Continues...
Juan continues to improve after his surgery last Thursday though he is still in quite a bit of pain. Each day he has become a little more active and each night he's slept a little more soundly. Tomorrow we will meet with the surgeon for the first time since leaving the hospital.
Two days ago we received a phone call from both the medical oncologist (the chemo guy) and the radiologist. They've changed their plan a little bit. Next Thursday (3/5) Juan will begin intensive chemotherapy with a cocktail of 3 drugs. They plan to do 2-4 rounds with each round lasting 21 days. After 2 rounds they'll perform CT and PET scans and decide whether to continue with rounds 3 and 4.
After this intense chemo regimen they'll move to a combined chemo and radiation treatment. This will involve a less intense form of chemo that uses only one drug. Apparently all 3 chemo drugs plus radiation is too much for the body to handle at once.
As before, after these chemo and radiation treatments the hope is that the tumor will have shrunk and pulled away from the pancreas. If this is the case surgery is still the next step in the plan.
Finally, a huge, huge thank you to everyone for your phone calls, cards and gifts. We have been overwhelmed by your generosity. Thanks to the wonderful meals given to us by Human Resources, the District Office, and the Prairie High School staff, I have not had to grocery shop for weeks and I suspect I won't have to for weeks to come. It has been so nice to have one less thing to think about during these busy and exhausting times. We cannot offer enough thanks and appreciation for all the kindness everyone has shown us.
Two days ago we received a phone call from both the medical oncologist (the chemo guy) and the radiologist. They've changed their plan a little bit. Next Thursday (3/5) Juan will begin intensive chemotherapy with a cocktail of 3 drugs. They plan to do 2-4 rounds with each round lasting 21 days. After 2 rounds they'll perform CT and PET scans and decide whether to continue with rounds 3 and 4.
After this intense chemo regimen they'll move to a combined chemo and radiation treatment. This will involve a less intense form of chemo that uses only one drug. Apparently all 3 chemo drugs plus radiation is too much for the body to handle at once.
As before, after these chemo and radiation treatments the hope is that the tumor will have shrunk and pulled away from the pancreas. If this is the case surgery is still the next step in the plan.
Finally, a huge, huge thank you to everyone for your phone calls, cards and gifts. We have been overwhelmed by your generosity. Thanks to the wonderful meals given to us by Human Resources, the District Office, and the Prairie High School staff, I have not had to grocery shop for weeks and I suspect I won't have to for weeks to come. It has been so nice to have one less thing to think about during these busy and exhausting times. We cannot offer enough thanks and appreciation for all the kindness everyone has shown us.
Saturday, February 21, 2009
After the Surgery
Juan's surgery on Thursday morning went very well. On Wednesday night we and a friend went out to dinner at a favorite Vietnamese restaurant and enjoyed an exceptionally tasty meal. Afterward we checked into our hotel, across the street from the hospital. Thursday started very early as we had to be at the hospital by 6am to check in. Mom and I enjoyed breakfast while Juan was in pre-op. Soon our disk pager (like those you get when waiting for a table at Olive Garden) buzzed and lit up and we were able to visit him for a few more minutes before he was taken in for surgery.
The surgery lasted around two hours and the surgeon greeted us with good news in the waiting room. The surgery itself went off without a hitch. They found no sign of even the smallest bit of metastasis anywhere in his abdominal or pelvic cavities - very promising news! The doctors chose not to look at the tumor's status with regard to the pancreas. They gave a few reasons for this:
1. The less they mess around during surgery the better - particularly to avoid blood loss.
2. Whatever they saw wouldn't change the next step in the treatment plan.
3. There is a risk they could break a piece off the tumor and create a problem that wasn't there before.
Although his apetite is diminished, Juan has been able to eat and drink mostly normally. However, because eating to fullness causes some pain, he is learning to take smaller and more frequent meals. Still, that he is eating normal food at all is encouraging.
Juan spent Thursday night in the hospital so they could make sure the pain was under control before sending him home. Mom and I stayed another night in the hotel across the street and so were able to stay late into the evening and show up early Friday morning. The second day seemed to find Juan feeling much better, though certainly still a surgery recoveree.
Late in the morning he was taken down for a MUGA (pronounced muggah) scan - something none of us had heard of, but agreed sounded like something out of a Dr. Seuss book. It produces a movie of the heart so that doctors will later be able to monitor whether the chemotherapy is affecting his cardiac function. Unfortunately it involved a lot of waiting in an uncomfortable wheelchair.
Finally, around 1pm, he was released from the hospital. We've found that the easy-chair in the living room is the most comfortable and convenient place to rest. We set up a card table for books and meals and each day he seems to be feeling much better than the day before. As mentioned in the last post, he has 2-3 weeks to recover before we begin the next stage of treatment. The surgeon even suggested that "now we are working on the cure", so we all remain hopeful that we may be able to fight "the demon" (as Juan calls it).
The surgery lasted around two hours and the surgeon greeted us with good news in the waiting room. The surgery itself went off without a hitch. They found no sign of even the smallest bit of metastasis anywhere in his abdominal or pelvic cavities - very promising news! The doctors chose not to look at the tumor's status with regard to the pancreas. They gave a few reasons for this:
1. The less they mess around during surgery the better - particularly to avoid blood loss.
2. Whatever they saw wouldn't change the next step in the treatment plan.
3. There is a risk they could break a piece off the tumor and create a problem that wasn't there before.
Although his apetite is diminished, Juan has been able to eat and drink mostly normally. However, because eating to fullness causes some pain, he is learning to take smaller and more frequent meals. Still, that he is eating normal food at all is encouraging.
Juan spent Thursday night in the hospital so they could make sure the pain was under control before sending him home. Mom and I stayed another night in the hotel across the street and so were able to stay late into the evening and show up early Friday morning. The second day seemed to find Juan feeling much better, though certainly still a surgery recoveree.
Late in the morning he was taken down for a MUGA (pronounced muggah) scan - something none of us had heard of, but agreed sounded like something out of a Dr. Seuss book. It produces a movie of the heart so that doctors will later be able to monitor whether the chemotherapy is affecting his cardiac function. Unfortunately it involved a lot of waiting in an uncomfortable wheelchair.
Finally, around 1pm, he was released from the hospital. We've found that the easy-chair in the living room is the most comfortable and convenient place to rest. We set up a card table for books and meals and each day he seems to be feeling much better than the day before. As mentioned in the last post, he has 2-3 weeks to recover before we begin the next stage of treatment. The surgeon even suggested that "now we are working on the cure", so we all remain hopeful that we may be able to fight "the demon" (as Juan calls it).
Thursday, February 12, 2009
Hi All -
This blog was created to keep everyone abreast of the latest situation with The Juan. Posts will come from both Amanda and Juan, and we'll try to update it whenever any new information is available.
The doctors have performed a battery of scans and so far we know:
-- The MRI showed no cancer in the brain
-- The PET seemed to indicate no major metastasis
Hopefully this means that the cancer is isolated to the single tumor in the stomach. However, this news was tempered by the fact that the PET scan also showed that the tumor was next to the pancreas. We (including the doctors) do not yet know if the tumor is simply next to the pancreas, or whether it has invaded that organ as well.
Juan goes in for a laparascopy on Thursday, February 19th. This surgery will not remove the tumor, but instead explore whether there are small "droplets" of metastasis that the PET scans could not detect. During this surgery they will also insert a feeding tube (see more below). He should be home either that same evening or on Friday.
He'll be given ~2 weeks to recover before chemo and radiation begin. In the case of stomach cancer, these treatments can make it very difficult to eat enough food to nutritionally maintain the body...hence the feeding tube. Chemo and radiation should last about 6-8 weeks. Then, if the tumor has not metastasized, the hope is that it will have shrunk and might be removed surgically.
Thank you to everyone for your warm thoughts (and generous food donations).
This blog was created to keep everyone abreast of the latest situation with The Juan. Posts will come from both Amanda and Juan, and we'll try to update it whenever any new information is available.
The doctors have performed a battery of scans and so far we know:
-- The MRI showed no cancer in the brain
-- The PET seemed to indicate no major metastasis
Hopefully this means that the cancer is isolated to the single tumor in the stomach. However, this news was tempered by the fact that the PET scan also showed that the tumor was next to the pancreas. We (including the doctors) do not yet know if the tumor is simply next to the pancreas, or whether it has invaded that organ as well.
Juan goes in for a laparascopy on Thursday, February 19th. This surgery will not remove the tumor, but instead explore whether there are small "droplets" of metastasis that the PET scans could not detect. During this surgery they will also insert a feeding tube (see more below). He should be home either that same evening or on Friday.
He'll be given ~2 weeks to recover before chemo and radiation begin. In the case of stomach cancer, these treatments can make it very difficult to eat enough food to nutritionally maintain the body...hence the feeding tube. Chemo and radiation should last about 6-8 weeks. Then, if the tumor has not metastasized, the hope is that it will have shrunk and might be removed surgically.
Thank you to everyone for your warm thoughts (and generous food donations).
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