Juan began his chemo-radiation combination therapy in late June, and had to drive into the city every weekday morning for a 20-minute appointment.
Once again, the chemo drug reared its angry head and at one point left Juan's feet in so much pain that he was barely able to walk from one room to another. But as usual, as soon as the nurses knew about his side effects immediate action was taken. He was pulled off the chemo portion of the treatment just 3 days early and each day thereafter Juan saw a huge reduction in pain.
Despite the foot pain, Juan remained very lucky in his lack of nausea. The radiologist had been almost sure that he would experience nausea since the radiation was directly targeting his stomach, but fortunately his prediction never played out. Although Juan completed his radiation on August 3rd, the exhaustion that almost always accompanies radiation has now arrived. Juan must spend much of his time resting, and generally finds it most helpful to take many smaller naps throughout the day to keep his energy up.
The next major step in treatment is surgery, scheduled for the 3rd of September. We (and the surgeon) are still largely ignorant of exactly what will take place during the surgery. Everything seems to be phrased in the sort of "if this, then that". We (again, surgeon included) still do not know whether the pancreas has been involved. If so, the surgeon will try to remove as much of the tumor as possible to extend life. If not, then the surgeon will remove the entirety of the tumor and leave Juan without a stomach. Although loss of one's entire stomach seems pretty extreme, it turns out our bodies are actually quite capable of living without one. He will effectively undergo gastric bypass; and people willingly do that for much "smaller" reasons than cancer. Juan will have to take smaller meals and eat more often; almost no food is off-limits, he just won't be able to stuff himself with a Shari's Country Fried Steak platter any more. But in truth, none of us should do that anyway. :)
Tuesday, August 25, 2009
Wednesday, June 17, 2009
End of Round Two
On Tuesday Juan finished his second round of chemo and was unhooked from his "continuous infusion" pump. Today we met with his radiologist and the surgeon, and tomorrow we will be meeting with his oncologist.
Unfortunately, the second round of chemo didn't seem to be particularly effective. The tumor appears to be about the same size as after the first round. Bummer. At least the second round of chemo was kinder (in regard to side-effects) than the first.
As usual, we were told that there were a number of paths along which we might proceed; and that the three doctors need to have another pow-wow first. I don't know why they don't just schedule for us to have meetings with them AFTER they pow-wow. However, by the time we left the surgeon's office he seemed to suggest he would be advocating for the following.
1. 2 weeks of rest before starting anything else
2. a 2-3 week trial of the radiation-chemo combination
3. another CT/PET scan to see if the radiation-chemo is helping
4.
* * a) if it is helping, continue until a total of 5 weeks has been completed
* * b) if it is NOT helping, quit the radiation-chemo
6. recover from radiation
7. perform surgery
As usual, we're playing the waiting game. More info to come tomorrow and the official plan should be solidified over the next several days.
Unfortunately, the second round of chemo didn't seem to be particularly effective. The tumor appears to be about the same size as after the first round. Bummer. At least the second round of chemo was kinder (in regard to side-effects) than the first.
As usual, we were told that there were a number of paths along which we might proceed; and that the three doctors need to have another pow-wow first. I don't know why they don't just schedule for us to have meetings with them AFTER they pow-wow. However, by the time we left the surgeon's office he seemed to suggest he would be advocating for the following.
1. 2 weeks of rest before starting anything else
2. a 2-3 week trial of the radiation-chemo combination
3. another CT/PET scan to see if the radiation-chemo is helping
4.
* * a) if it is helping, continue until a total of 5 weeks has been completed
* * b) if it is NOT helping, quit the radiation-chemo
6. recover from radiation
7. perform surgery
As usual, we're playing the waiting game. More info to come tomorrow and the official plan should be solidified over the next several days.
Tuesday, May 26, 2009
Halfway through the second round
Due to my negligence there is much to catch up on.
Because of the mouth sores Juan was given a couple of weeks to heal up before beginning his second round of chemo in early May. They are using the same drugs as before, but with a reduced dose to help keep side effects at bay even longer. We are now exactly half-way through the second round and so far Juan has had no serious side effects during this second go.
We met with the doctor this morning and as usual we really only know what's going to happen for the next three weeks. In two weeks we'll complete another set of PET and CT scans. Then the following week we'll meet with his general oncologist, the surgeon, and the radiologist. At that point they'll together decide whether to do a radiation-chemo combination before surgery or to just jump straight into surgery.
Sorry for the long delay - somehow days seem to melt into each other and then suddenly you realize weeks have gone by.
Because of the mouth sores Juan was given a couple of weeks to heal up before beginning his second round of chemo in early May. They are using the same drugs as before, but with a reduced dose to help keep side effects at bay even longer. We are now exactly half-way through the second round and so far Juan has had no serious side effects during this second go.
We met with the doctor this morning and as usual we really only know what's going to happen for the next three weeks. In two weeks we'll complete another set of PET and CT scans. Then the following week we'll meet with his general oncologist, the surgeon, and the radiologist. At that point they'll together decide whether to do a radiation-chemo combination before surgery or to just jump straight into surgery.
Sorry for the long delay - somehow days seem to melt into each other and then suddenly you realize weeks have gone by.
Friday, April 10, 2009
Almost done....(we hope)
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).
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).
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.
Subscribe to:
Posts (Atom)