Hi All -
Rick had a biopsy on Monday evening and Dr. Daniel found that the meso has spread along the incision lines and is also invading Rick's spine. I guess we aren't destined to be the long term survisors of this ugly disease. We will visit with the radiologist and the cancer docs next week to see what intervention might be reasonable to make Rick more comfortable and slow the progress of the disease. We all are scheduled to go sailing in the British Virgin Islands for the first week in February and Rick wants to do what is needed to be well enough to go. A small course of radiation should slow the growth of the lesions in his spine and since he tolerated chemo fairly well, we might decide to go through a few rounds of chemo to slow the spread. As you know, all decisions will be a compromise between extending life and maintaining the best lifestyle possible in this horrific nightmare.
The good news is that Rick comes home from the hospital today. All the kids will be here through the New Years weekend(including Kimi Schafer), so we will have a good time. For the next two weeks, Rick will still be receiving IV antibiotics for the infections in his lung and lasix to keep the fluid from building up.
As always, we are grateful for your love, prayers and support.
Wednesday, December 29, 2010
Saturday, December 25, 2010
Catching up
Hi all -
Sorry I have fallen behind with posts. It's been busy.
Rick is in the hospital again. His right lung still has pockets of infection and Dr. Daniel put him back into the hospital on Dec. 23 so that he can give him high powered antibiotic, IV (Zosyn). He will be in the hospital until Dec. 27 or 28 and then home on IV for two more weeks. The CT last week also showed some small lumps along the incision on his back. Dr. Daniel will biopsy them on Monday afternoon. Of course, there is a possibility that they are meso - but they might also be something as simple as the "buttons" that were used during surgery to tack (something) into place. It is possible that the buttons are causing irritation. I'm going with the button theory.
It's been tough having Rick in the hospital over Christmas. Kate, Ken, and Ben were here on the 23rd and 24th. They took Ben to the hospital this a.m. to visit with Rick for a half hour before they took off for Ken's family in Phoenix. It was hard for Rick to know he couldn't watch Ben open gifts on Christmas morning. The good thing is that they will be back here for New Years and Rick will be home then. In fact, all the girls and husbands will be here for New Years, so we will have our Christmas next weekend.
Rick saw a gastroenterologist two weeks ago and his stomach and pyloris were scoped. They were clear and functioning well. He has an ulcer on his esophagus, but that is no surprise after the multiple lesions he had on his esophagus in April. The only surprise is that there was only one ulcer!
He saw a cardiologist on Dec. 23 who did an echo cardiogram and said Rick's heart is functioning well within the normal range and he doesn't believe the fluid accumulation was due to poor functioning of the heart.
So - the good news is that everything but the lung looks good. The concerning news is that he seems to have multiple pockets of infection in his lung and we don't know what the little lumps are along his incision.....More later.
Merry Christmas
Sorry I have fallen behind with posts. It's been busy.
Rick is in the hospital again. His right lung still has pockets of infection and Dr. Daniel put him back into the hospital on Dec. 23 so that he can give him high powered antibiotic, IV (Zosyn). He will be in the hospital until Dec. 27 or 28 and then home on IV for two more weeks. The CT last week also showed some small lumps along the incision on his back. Dr. Daniel will biopsy them on Monday afternoon. Of course, there is a possibility that they are meso - but they might also be something as simple as the "buttons" that were used during surgery to tack (something) into place. It is possible that the buttons are causing irritation. I'm going with the button theory.
It's been tough having Rick in the hospital over Christmas. Kate, Ken, and Ben were here on the 23rd and 24th. They took Ben to the hospital this a.m. to visit with Rick for a half hour before they took off for Ken's family in Phoenix. It was hard for Rick to know he couldn't watch Ben open gifts on Christmas morning. The good thing is that they will be back here for New Years and Rick will be home then. In fact, all the girls and husbands will be here for New Years, so we will have our Christmas next weekend.
Rick saw a gastroenterologist two weeks ago and his stomach and pyloris were scoped. They were clear and functioning well. He has an ulcer on his esophagus, but that is no surprise after the multiple lesions he had on his esophagus in April. The only surprise is that there was only one ulcer!
He saw a cardiologist on Dec. 23 who did an echo cardiogram and said Rick's heart is functioning well within the normal range and he doesn't believe the fluid accumulation was due to poor functioning of the heart.
So - the good news is that everything but the lung looks good. The concerning news is that he seems to have multiple pockets of infection in his lung and we don't know what the little lumps are along his incision.....More later.
Merry Christmas
Tuesday, December 7, 2010
Dr. Daniel on Monday
Hi All -
We saw Jon Daniel on Monday and he decided to wait two more weeks for the fluid to drain out of Rick's lung areas and abdomen and evaluate then. Rick has lost about 10 lbs. since last Monday - quite a weight loss plan - all fluid. He is feeling MUCH better although still short of breath when he tries to walk and that pesky dry cough keeps him awake at night.
Dr. Daniel told us that the CT with contrast showed that Rick's stomach was very large and he suspected that the pyloric valve might be narrowing again. (Remember Boston - the pyloris was closed and Rick had a very extended ilius?) So he asked Rick to see a gastroenterologist (we see Dr. Hurtado next Thursday) because he might need to have a balloon stretch the pyloris again. When they took the lung, they also took some nerves that might be involved in the constriction of the stomach, pyloris. I can't remember the names of the nerves.
He sees a cardiologist in two weeks and a pulmonologist this Thursday. I'm sure everyone will tinker with his meds and we can only hope their medical advice compliments each other. All this scheduling, medical information gathering, and visiting with doctors seems to absorb most of our time, but we really feel so lucky that we have all these specialists who can support Rick's recovery...and we are also grateful for good insurance.
We saw Jon Daniel on Monday and he decided to wait two more weeks for the fluid to drain out of Rick's lung areas and abdomen and evaluate then. Rick has lost about 10 lbs. since last Monday - quite a weight loss plan - all fluid. He is feeling MUCH better although still short of breath when he tries to walk and that pesky dry cough keeps him awake at night.
Dr. Daniel told us that the CT with contrast showed that Rick's stomach was very large and he suspected that the pyloric valve might be narrowing again. (Remember Boston - the pyloris was closed and Rick had a very extended ilius?) So he asked Rick to see a gastroenterologist (we see Dr. Hurtado next Thursday) because he might need to have a balloon stretch the pyloris again. When they took the lung, they also took some nerves that might be involved in the constriction of the stomach, pyloris. I can't remember the names of the nerves.
He sees a cardiologist in two weeks and a pulmonologist this Thursday. I'm sure everyone will tinker with his meds and we can only hope their medical advice compliments each other. All this scheduling, medical information gathering, and visiting with doctors seems to absorb most of our time, but we really feel so lucky that we have all these specialists who can support Rick's recovery...and we are also grateful for good insurance.
Saturday, December 4, 2010
Home
Hi Everyone -
Rick was released from UMC yesterday afternoon and was happy to take a shower and get back into his own clothes. He is breathing much easier, although not well enough to do much physical activity. He will continue to take the lasix, antibiotic, and a bunch of other drugs over the weekend and we hope the fluid in his chest (both sides) will continue to drain off. We see Jon Daniel again on Monday morning and he will decide if he needs to surgically draw off more fluid from both sides of his chest (lung on right side, not pleura and I guess the cavity where the lung was on the left). If he decides that is necessary, it will probably be scheduled for next Thursday. It's interesting that Rick's hands and feet have never been swollen. All the fluid is in his abdomen and the most likely explanation is that his heart has moved significantly and can't pump off the fluid as efficiently as it used to. (Just for the record, there was a significant decrease in his heart's ejection fraction. Tricia clarified the right word for me.) I bumped into Rick's oncologist, Linda Garland, yesterday and she said that once he feels better and is more active, his heart will probably improve. We cherish every positive comment doctors offer!
Rick was released from UMC yesterday afternoon and was happy to take a shower and get back into his own clothes. He is breathing much easier, although not well enough to do much physical activity. He will continue to take the lasix, antibiotic, and a bunch of other drugs over the weekend and we hope the fluid in his chest (both sides) will continue to drain off. We see Jon Daniel again on Monday morning and he will decide if he needs to surgically draw off more fluid from both sides of his chest (lung on right side, not pleura and I guess the cavity where the lung was on the left). If he decides that is necessary, it will probably be scheduled for next Thursday. It's interesting that Rick's hands and feet have never been swollen. All the fluid is in his abdomen and the most likely explanation is that his heart has moved significantly and can't pump off the fluid as efficiently as it used to. (Just for the record, there was a significant decrease in his heart's ejection fraction. Tricia clarified the right word for me.) I bumped into Rick's oncologist, Linda Garland, yesterday and she said that once he feels better and is more active, his heart will probably improve. We cherish every positive comment doctors offer!
Thursday, December 2, 2010
Visiting University Medical Center
Hi Everyone
Rick was getting more and more short of breath and on the way home from San Diego on Monday, he called his primary care because he thought he might have picked up a virus/cold from the boys (niece Jen, husband Paul, three boys - and of course, Ben) over Thanksgiving. On reflection, he had been gradually becoming more and more short of breath for about 3 weeks, but it was gradual and took awhile to reach a critical level.
His primary care doctor was away and he was sent to someone else who took a chest X-ray and said there was fluid in the area where his left lung had been. Also, he had gained 7 pounds since his last weigh in - while in fact he has been eating very little because he doesn't feel well. A CT scan was ordered. When he got home, we called Jon Daniel, the surgeon who studied with Sugarbaker and is now practicing here (and doing the same surgery Rick had). His assistant, Shawn, e-mailed Jon while I was on the phone and called back a few minutes later saying Jon wanted Rick to be admitted to the hospital for observation. (According to Shawn, he also said "Of course there is fluid on the left side - that's all that is there!" We waited all day (at home) for a bed to be available and checked into University Medical Center at 7:30 p.m. Rick started in a shared room but then they moved him to a private room at the end of the hall...very quiet and nice view of the people coming and going from the front of the hospital.
They started Rick on Lasix right away and by morning he had dropped 8 pounds. (Take a pill, lose 8 pounds - this could be a miracle drug!) He has been put on a strong antibiotic (IV - Zosin). Lots of tests were ordered...A CT with contrast, a sonogram of his right lung, a screening of his thorax, an echo cardiogram, and the ever popular generic chest x-ray. He has a small amount of fluid in his right lung, but the intervention radiologist thought it was too little and too risky to try to draw some of it out. The person who did the thorax screen said there was some fluid - but needs to compare to previous tests to see if it has always been like that or if this is a change.
Dr. Daniel came by last night to review the situation. He has read the report from the PET scan done in Boston and said that while there is still inflammation in the area where the lung surgery was done, there is nothing to indicate that this fluid retention is directly related to meso growth. What is more likely is that consequences of the surgery have caused changes in Rick's body that are making it more difficult to pump off fluid. His heart has shifted significantly and has lost a lot of his ability to pump off fluid. (Ejection rate, ejection click - I keep forgetting the right words - but that rate has dropped from the 60's to the 40's.) Also, Rick's digestive system is sluggish and whenever he is sick it slows even more creating backup that causes pressure on his lung.
The most uplifting thing Jon said was that he has no reason at this time to think this is a result of growth of the meso. He said we have every reason to be cautiously optimistic and that, as much as possible, we need to just move on with life. (Hard to do when you are sitting in a stiff, upright hospital chair resting the computer on a hospital meal cart.)
If Rick continues to improve (his breathing and shedding off the fluid) we should be released tomorrow (Friday). It sounds like the fluid might reaccumulate. We'll just have to wait and see.
Thanks to everyone who has called, visited, e-mailed. We appreciate your support and your prayers.
Rick was getting more and more short of breath and on the way home from San Diego on Monday, he called his primary care because he thought he might have picked up a virus/cold from the boys (niece Jen, husband Paul, three boys - and of course, Ben) over Thanksgiving. On reflection, he had been gradually becoming more and more short of breath for about 3 weeks, but it was gradual and took awhile to reach a critical level.
His primary care doctor was away and he was sent to someone else who took a chest X-ray and said there was fluid in the area where his left lung had been. Also, he had gained 7 pounds since his last weigh in - while in fact he has been eating very little because he doesn't feel well. A CT scan was ordered. When he got home, we called Jon Daniel, the surgeon who studied with Sugarbaker and is now practicing here (and doing the same surgery Rick had). His assistant, Shawn, e-mailed Jon while I was on the phone and called back a few minutes later saying Jon wanted Rick to be admitted to the hospital for observation. (According to Shawn, he also said "Of course there is fluid on the left side - that's all that is there!" We waited all day (at home) for a bed to be available and checked into University Medical Center at 7:30 p.m. Rick started in a shared room but then they moved him to a private room at the end of the hall...very quiet and nice view of the people coming and going from the front of the hospital.
They started Rick on Lasix right away and by morning he had dropped 8 pounds. (Take a pill, lose 8 pounds - this could be a miracle drug!) He has been put on a strong antibiotic (IV - Zosin). Lots of tests were ordered...A CT with contrast, a sonogram of his right lung, a screening of his thorax, an echo cardiogram, and the ever popular generic chest x-ray. He has a small amount of fluid in his right lung, but the intervention radiologist thought it was too little and too risky to try to draw some of it out. The person who did the thorax screen said there was some fluid - but needs to compare to previous tests to see if it has always been like that or if this is a change.
Dr. Daniel came by last night to review the situation. He has read the report from the PET scan done in Boston and said that while there is still inflammation in the area where the lung surgery was done, there is nothing to indicate that this fluid retention is directly related to meso growth. What is more likely is that consequences of the surgery have caused changes in Rick's body that are making it more difficult to pump off fluid. His heart has shifted significantly and has lost a lot of his ability to pump off fluid. (Ejection rate, ejection click - I keep forgetting the right words - but that rate has dropped from the 60's to the 40's.) Also, Rick's digestive system is sluggish and whenever he is sick it slows even more creating backup that causes pressure on his lung.
The most uplifting thing Jon said was that he has no reason at this time to think this is a result of growth of the meso. He said we have every reason to be cautiously optimistic and that, as much as possible, we need to just move on with life. (Hard to do when you are sitting in a stiff, upright hospital chair resting the computer on a hospital meal cart.)
If Rick continues to improve (his breathing and shedding off the fluid) we should be released tomorrow (Friday). It sounds like the fluid might reaccumulate. We'll just have to wait and see.
Thanks to everyone who has called, visited, e-mailed. We appreciate your support and your prayers.
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