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.
Wednesday, October 13, 2010
Boston visit yesterday
Hi everyone -
Back in Boston again. Yesterday, Rick had a PET CT and we were supposed to visit with Dr. Sugarbaker. Our doctors in Tucson and Boston wanted the PET CT to have a look at what is happening in Rick's chest although all cautioned us not to expect any clear information at this point. With the PET CT, Rick is given an IV with glucose and then he sits very still for an hour. They run the scan and anyplace in his body where there is injury, significant metabolic activity, and cancer will light up. Rick's chest cavity is still recovering from surgery, radiation, and chemotherapy, so we were told that the area of injury will still light up.
After the test we went to Sugarbakers office and checked in - only to learn that Sugarbaker had been called away on an emergency and wouldn't be back until Friday. We waited for 4 1/2 hours in the outer office because DaSilva was seeing all the patients and they were extremely behind schedule. Heather and Rod Nash were also waiting so we had a great time chatting and laughing about how awful this whole process has been. (Heather had her surgery right after Rick's and we have become friends.)
Finally, we were called back and after another significant wait, DaSilva came in, flipped through the images from the PET CT and said there was still uptake at the site of the surgery and it was too soon to know if it was just injury of if there was still meso there. (Just as predicted.) There was good news though....No other part of his chest, lung, abdomen lit up at all - so there is no meso in any other part of the body. The part that did light up was a very thin line of pink to blue coloring - not the ugly hot yellow that glowed at us on earlier PET CT's.
We will be coming back to Boston in late February and they will be able to tell us more then. In the meantime, we will wait for the written report from the scan and will show the scan to our oncologist and surgeon in Tucson. I also plan to e-mail Dr. Sugarbaker to ask him to review the scan and tell us what his impression is.
So we continue to live with uncertainty, but we feel that there was a lot of good news to celebrate about. Thanks to all of you for your calls and continuing support.
Sue
Back in Boston again. Yesterday, Rick had a PET CT and we were supposed to visit with Dr. Sugarbaker. Our doctors in Tucson and Boston wanted the PET CT to have a look at what is happening in Rick's chest although all cautioned us not to expect any clear information at this point. With the PET CT, Rick is given an IV with glucose and then he sits very still for an hour. They run the scan and anyplace in his body where there is injury, significant metabolic activity, and cancer will light up. Rick's chest cavity is still recovering from surgery, radiation, and chemotherapy, so we were told that the area of injury will still light up.
After the test we went to Sugarbakers office and checked in - only to learn that Sugarbaker had been called away on an emergency and wouldn't be back until Friday. We waited for 4 1/2 hours in the outer office because DaSilva was seeing all the patients and they were extremely behind schedule. Heather and Rod Nash were also waiting so we had a great time chatting and laughing about how awful this whole process has been. (Heather had her surgery right after Rick's and we have become friends.)
Finally, we were called back and after another significant wait, DaSilva came in, flipped through the images from the PET CT and said there was still uptake at the site of the surgery and it was too soon to know if it was just injury of if there was still meso there. (Just as predicted.) There was good news though....No other part of his chest, lung, abdomen lit up at all - so there is no meso in any other part of the body. The part that did light up was a very thin line of pink to blue coloring - not the ugly hot yellow that glowed at us on earlier PET CT's.
We will be coming back to Boston in late February and they will be able to tell us more then. In the meantime, we will wait for the written report from the scan and will show the scan to our oncologist and surgeon in Tucson. I also plan to e-mail Dr. Sugarbaker to ask him to review the scan and tell us what his impression is.
So we continue to live with uncertainty, but we feel that there was a lot of good news to celebrate about. Thanks to all of you for your calls and continuing support.
Sue
Thursday, September 30, 2010
Last Chemo Today
Hi All -
Rick had his last chemotherapy infusion today. When it was finished the nurses all gathered and distributed tiny tubes of bubbles. We all blew "champagne bubbles" and someone took Rick's picture. They gave him a small momento, picture, and graduation certificate. He still has to weather the effects of this chemo, but then life moves on.
We visit Dr. Sugarbaker in Boston in mid-October for a check-up. His Tucson oncologist, Linda Garland, said she thought he looked great and that David Sugarbaker would be very happy to see how well Rick was doing.
We are looking forward to a positive report in Boston. Thank all of you for your continued support and prayers. They carried us through.
Big hugs to all of you.
Rick had his last chemotherapy infusion today. When it was finished the nurses all gathered and distributed tiny tubes of bubbles. We all blew "champagne bubbles" and someone took Rick's picture. They gave him a small momento, picture, and graduation certificate. He still has to weather the effects of this chemo, but then life moves on.
We visit Dr. Sugarbaker in Boston in mid-October for a check-up. His Tucson oncologist, Linda Garland, said she thought he looked great and that David Sugarbaker would be very happy to see how well Rick was doing.
We are looking forward to a positive report in Boston. Thank all of you for your continued support and prayers. They carried us through.
Big hugs to all of you.
Saturday, August 21, 2010
Second Chemo Done
Hi All -
After two wonderful, relaxing, recuperative weeks in San Diego, Rick and I are back to reality. Rick had his second infusion of chemotherapy on Thursday. Instead of Cisplatin, Dr. Garland ordered Alimpta (same as last time) and Carboplatin. She said that carboplatin is a "cousin" of cisplatin - just as effective and less toxic. The total infusion process took about 2 hours instead of the over 4 hours it took to infuse the alimpta and cisplatin. The information on carboplatin also says he will only feel nauseous for about 2 days. Today is day two and he is still feeling pretty nasty. Tomorrow will be better.
Sue
After two wonderful, relaxing, recuperative weeks in San Diego, Rick and I are back to reality. Rick had his second infusion of chemotherapy on Thursday. Instead of Cisplatin, Dr. Garland ordered Alimpta (same as last time) and Carboplatin. She said that carboplatin is a "cousin" of cisplatin - just as effective and less toxic. The total infusion process took about 2 hours instead of the over 4 hours it took to infuse the alimpta and cisplatin. The information on carboplatin also says he will only feel nauseous for about 2 days. Today is day two and he is still feeling pretty nasty. Tomorrow will be better.
Sue
Thursday, July 29, 2010
Good-bye radiation!
Rick has just had his last radiation treatment and this is one ending that we won't mourn a bit. It has been a tough 5 weeks. He has been tired, like everyone who has undergone radiation, but because of the area they are hitting he has also been very nauseous. He has two kinds of nausea pills, Tricia and Mike brought Coca Tea from Bolivia, and friends have delivered other homeopathic cures. Everything helped - most of all the support of family and friends.
We are sad to miss Lori and Brian's wedding tomorrow, but Rick is not strong enough to travel right now. His friend Steve Maynard adjusted his visit to Tucson and is here with us now - so Rick has had a truly wonderful distraction from the side effects of radiation. We will take a week to recover, visit the oncologist, and then spend two weeks in San Diego. Cindy and John will visit there. Then back to Tucson to start chemotherapy again. Three rounds of chemo - each three weeks apart - and then life goes on. It's important to cherish every moment, but we are looking forward to cooling autumn breezes and an end to the chemical warfare against the mesothelioma.
We are sad to miss Lori and Brian's wedding tomorrow, but Rick is not strong enough to travel right now. His friend Steve Maynard adjusted his visit to Tucson and is here with us now - so Rick has had a truly wonderful distraction from the side effects of radiation. We will take a week to recover, visit the oncologist, and then spend two weeks in San Diego. Cindy and John will visit there. Then back to Tucson to start chemotherapy again. Three rounds of chemo - each three weeks apart - and then life goes on. It's important to cherish every moment, but we are looking forward to cooling autumn breezes and an end to the chemical warfare against the mesothelioma.
Friday, July 2, 2010
7 radiation treatments down, 18 to go
Hi All -
Rick has a radiation treatment every night at 6:30 - although often they run late. We get home at 7:30 and Rick eats a small dinner and then goes to bed. What a nightlife! The treatment is 12 minutes of radiation and takes about 20-25 minutes all together. Most of the people Rick talked to about radiation said that he would be very tired but otherwise ok. In Rick's particular situation, they are radiating the lung area and hit the stomach area (spleen and kidney too) for a long time and he has been very nauseous. He is taking medication to try to control that side effect. His Tucson surgeon, Jonathan Daniel, said by the end the radiation may also affect his esophagus and make it difficult to swallow. All unpleasant stuff - but as we all know, getting old isn't for wimps...add cancer treatment to that and you are really in a deep vat of nothing good. Rick keeps trying to find that Zen place that will carry him through the next few weeks of radiation and then the chemotherapy. I know he will travel this path in good mental balance - he's remarkable in his ability to do that. It's interesting how many people we talk with who have walked similar paths - cancer, surgery, radiation, chemotherapy. Then, life went on. It's a great vision and we cling to every successful story.
For those of you who are computer savvy - there was a tv show on last night called Boston Medical on ABC at 9:00 Tucson time. It's a reality show with multiple stories and one of them featured Rick's Boston surgeon, David Sugarbaker, and his Tucson surgeon, Jonathan Daniel (When JD was in Boston studying with Sugarbaker). If you go to the website you can watch a brief bit about a man with mesothelioma.
That's all for now. It's significantly hot here in Tucson. Significantly.
Rick has a radiation treatment every night at 6:30 - although often they run late. We get home at 7:30 and Rick eats a small dinner and then goes to bed. What a nightlife! The treatment is 12 minutes of radiation and takes about 20-25 minutes all together. Most of the people Rick talked to about radiation said that he would be very tired but otherwise ok. In Rick's particular situation, they are radiating the lung area and hit the stomach area (spleen and kidney too) for a long time and he has been very nauseous. He is taking medication to try to control that side effect. His Tucson surgeon, Jonathan Daniel, said by the end the radiation may also affect his esophagus and make it difficult to swallow. All unpleasant stuff - but as we all know, getting old isn't for wimps...add cancer treatment to that and you are really in a deep vat of nothing good. Rick keeps trying to find that Zen place that will carry him through the next few weeks of radiation and then the chemotherapy. I know he will travel this path in good mental balance - he's remarkable in his ability to do that. It's interesting how many people we talk with who have walked similar paths - cancer, surgery, radiation, chemotherapy. Then, life went on. It's a great vision and we cling to every successful story.
For those of you who are computer savvy - there was a tv show on last night called Boston Medical on ABC at 9:00 Tucson time. It's a reality show with multiple stories and one of them featured Rick's Boston surgeon, David Sugarbaker, and his Tucson surgeon, Jonathan Daniel (When JD was in Boston studying with Sugarbaker). If you go to the website you can watch a brief bit about a man with mesothelioma.
That's all for now. It's significantly hot here in Tucson. Significantly.
Wednesday, June 23, 2010
Radiation FINALLY
Hi All -
Rick was a trooper through his first round of chemotherapy. The first few days were fairly easy, but from about day 4 through 8 he felt exhausted, nauseous, and another feeling of general YUCH that he said he couldn't really describe. So much skin fell off of him that one morning it looked like it had snowed on our bedroom floor. (Too much detail?)
During that same time, the dermatologist removed a squamous cell carconoma from his arm. He was so sick from the chemo, that he had to lay down while they removed the growth from his arm. On the positive side, he was oblivious to what the doctor was doing. He said that compared to all the other pokes and prods he has had, the arm surgery was nothing.
Rick was supposed to start radiation on June 21, Monday. Dr. Chi was on vacation last week and he did not like some component of the radiation plan that had been developed - so when he got back on Monday, they had to rework the plan. We were anxious about the delay because the radiation is scheduled to run for 25 working days and based on the original plan, Rick would have been finished in time to go to Lori and Brian's wedding in Philadelphia. The radiology office was very aware of the wedding schedule and managed to get the new plan finished today (Wednesday) and we are supposed to get a call this afternoon telling us what time radiation will be tomorrow. So again, we wait - but with the hope that it may all work out after all.
Rick was a trooper through his first round of chemotherapy. The first few days were fairly easy, but from about day 4 through 8 he felt exhausted, nauseous, and another feeling of general YUCH that he said he couldn't really describe. So much skin fell off of him that one morning it looked like it had snowed on our bedroom floor. (Too much detail?)
During that same time, the dermatologist removed a squamous cell carconoma from his arm. He was so sick from the chemo, that he had to lay down while they removed the growth from his arm. On the positive side, he was oblivious to what the doctor was doing. He said that compared to all the other pokes and prods he has had, the arm surgery was nothing.
Rick was supposed to start radiation on June 21, Monday. Dr. Chi was on vacation last week and he did not like some component of the radiation plan that had been developed - so when he got back on Monday, they had to rework the plan. We were anxious about the delay because the radiation is scheduled to run for 25 working days and based on the original plan, Rick would have been finished in time to go to Lori and Brian's wedding in Philadelphia. The radiology office was very aware of the wedding schedule and managed to get the new plan finished today (Wednesday) and we are supposed to get a call this afternoon telling us what time radiation will be tomorrow. So again, we wait - but with the hope that it may all work out after all.
Sunday, June 13, 2010
Chemo - another interesting thing to learn about
Hi All -
Rick is feeling well and continues to be stronger every day. He still marvels at how weak he is, but every single day he is better than the day before (mostly). We took a chemo class on Wednesday and learned that for 48 hours after the infusion of the chemo, his body fluids are toxic and that he is even supposed to wipe off the toilet seat after using it to prevent someone else from absorbing the chemicals!
On Thursday, we went to the Cancer Center - which is a very cheerful place that has been arranged to make the patients as comfortable and supported as possible. Rick was taking a steroid and anti-nausea medication before the chemo was started and would continue those drugs for two more days. The nurse infused the Alimta first, which took about 10 minutes. Then came the cisplatin, which is the drug that has more harsh side effects. It took 2 1/2 hours for the cisplatin to drip into his vein and then we were done.
For the first two days, Rick was "wired" on the steriod. He was out for walks, busily cleaning the kitchen, and hopping into his car to pick up a prescription. He couldn't settle down, so finally I had to order him to lie down for an hour! He rested on the sofa and finally asked, "Can I get up NOW?" Today, Sunday, is the first day he has felt the effects of the chemo. He is very tired and at times he says it feels like there are little things crawling in his hands and feet. (Who knows, maybe there ARE little things crawling in his hands and feet.) He and Conner have still been taking 4-lap walks around the pool every hour or so and thankfully, he is still not nauseous. Other than that, he has rested most of the day.
What is amazing to me is Rick's ability to maintain a positive attitude. He always manages to smile and look on the bright side. So far, the chemo hasn't been as bad as we feared. We'll hope the effects continue to be minor and we'll keep you posted.
Rick is feeling well and continues to be stronger every day. He still marvels at how weak he is, but every single day he is better than the day before (mostly). We took a chemo class on Wednesday and learned that for 48 hours after the infusion of the chemo, his body fluids are toxic and that he is even supposed to wipe off the toilet seat after using it to prevent someone else from absorbing the chemicals!
On Thursday, we went to the Cancer Center - which is a very cheerful place that has been arranged to make the patients as comfortable and supported as possible. Rick was taking a steroid and anti-nausea medication before the chemo was started and would continue those drugs for two more days. The nurse infused the Alimta first, which took about 10 minutes. Then came the cisplatin, which is the drug that has more harsh side effects. It took 2 1/2 hours for the cisplatin to drip into his vein and then we were done.
For the first two days, Rick was "wired" on the steriod. He was out for walks, busily cleaning the kitchen, and hopping into his car to pick up a prescription. He couldn't settle down, so finally I had to order him to lie down for an hour! He rested on the sofa and finally asked, "Can I get up NOW?" Today, Sunday, is the first day he has felt the effects of the chemo. He is very tired and at times he says it feels like there are little things crawling in his hands and feet. (Who knows, maybe there ARE little things crawling in his hands and feet.) He and Conner have still been taking 4-lap walks around the pool every hour or so and thankfully, he is still not nauseous. Other than that, he has rested most of the day.
What is amazing to me is Rick's ability to maintain a positive attitude. He always manages to smile and look on the bright side. So far, the chemo hasn't been as bad as we feared. We'll hope the effects continue to be minor and we'll keep you posted.
Wednesday, June 2, 2010
Hi All -
Some of you said you are curious about what Dr. Sugarbaker's response to the question about Alympta will be. Here it is.
Sugarbaker, David John,M.D. to me
show details 5:30 PM (22 minutes ago)
Hi. An Alympta assay has not been released by the oncotech company . We would certainly get it if they had it . There are three regimes with good track records in the literature. Cis-alympta, CAP ( adriamycin,cyclophasphomide and cis plat) and gem cis plat. We have a read out on two of these for Rick on the current report. . So we have options and I would defer to Dr Garland on the course of chemo . We however are very excited about Ricks report in that it gives us another option with a very very favorable resistance pattern . I tried on several occasions to reach Dr Garland but we missed and I will try again upon my return to boston on Thursday . Sounds like Rick is doing very well. The dry nonproductive cough is common and may last up to 3 months. All the best ds
Some of you said you are curious about what Dr. Sugarbaker's response to the question about Alympta will be. Here it is.
Sugarbaker, David John,M.D. to me
show details 5:30 PM (22 minutes ago)
Hi. An Alympta assay has not been released by the oncotech company . We would certainly get it if they had it . There are three regimes with good track records in the literature. Cis-alympta, CAP ( adriamycin,cyclophasphomide and cis plat) and gem cis plat. We have a read out on two of these for Rick on the current report. . So we have options and I would defer to Dr Garland on the course of chemo . We however are very excited about Ricks report in that it gives us another option with a very very favorable resistance pattern . I tried on several occasions to reach Dr Garland but we missed and I will try again upon my return to boston on Thursday . Sounds like Rick is doing very well. The dry nonproductive cough is common and may last up to 3 months. All the best ds
Tuesday, June 1, 2010
Radiation Oncology Visit
Hi All -
Rick, Tricia and I visited Dr. Alexander Chi, the radiation oncologist. We reviewed the procedures and risks of radiation. Dr. Chi had hoped to begin the radiation simulation today, but Health Net did not approve the planned procedure yet, so we will need to come back - hopefully tomorrow. In the meantime, Dr. Chi talked with Dr. Garland. We see her on Thursday and Rick will have one round of chemo before radiation. Dr. Chi said radiation will run 25 days and begin around June 21 - if all goes according to plan.
Rick, Tricia and I visited Dr. Alexander Chi, the radiation oncologist. We reviewed the procedures and risks of radiation. Dr. Chi had hoped to begin the radiation simulation today, but Health Net did not approve the planned procedure yet, so we will need to come back - hopefully tomorrow. In the meantime, Dr. Chi talked with Dr. Garland. We see her on Thursday and Rick will have one round of chemo before radiation. Dr. Chi said radiation will run 25 days and begin around June 21 - if all goes according to plan.
Thursday, May 27, 2010
Visit today with Dr. Garland
Hi All -
We saw Linda Garland, the oncologist today, and she checked Rick's vitals, took some blood, listened to his lungs, etc. All was good. She asked if he was having a harder time breathing in Tucson than he did in Boston (he nodded) and she said it's the elevation here. She said that his treatment will start with radiation and then follow with chemo. (We talked with Jackie Lee from Boston yesterday and she told us that Dr. Garland feels that Rick should have chemo in addition to radiation - even though Sugarbaker told us it would just be radiation.)
Dr. Garland referred us to Dr. Alexander Chee, radiation oncologist at UMC. She said sometimes she orders chemo and radiation at the same time, but because Rick's radiation will be in the lung cavity right up against the heart, they wouldn't do both at the same time. We have an appointment to see Dr. Chee on June 1, next Tuesday. Dr. Garland said it will take him some time to plan the radiation and it won't start immediately. She said if there is too long of a gap (more than 2 weeks), she will give Rick a round of chemo before the radiation starts. We will e-mail her after the appointment next Tuesday and make a decision about the chemo. We asked how long the radiation will run and she said it varies, so I guess we will learn more next Tuesday!
One interesting thing is that an analysis was done by Oncotech of how Rick's tumor responded to different types of chemo. Dr. Garland was dismissive of the analysis because it did not test pemetrexed (Alimta) which she said was one of the most effective drugs for treating meso and the analysis has not been approved by the FDA. I will send an e-mail to Sugarbaker asking why pemetrexed was not included in the test and let you know what he said.
I will post again next Tuesday after we see Dr. Chee.
We saw Linda Garland, the oncologist today, and she checked Rick's vitals, took some blood, listened to his lungs, etc. All was good. She asked if he was having a harder time breathing in Tucson than he did in Boston (he nodded) and she said it's the elevation here. She said that his treatment will start with radiation and then follow with chemo. (We talked with Jackie Lee from Boston yesterday and she told us that Dr. Garland feels that Rick should have chemo in addition to radiation - even though Sugarbaker told us it would just be radiation.)
Dr. Garland referred us to Dr. Alexander Chee, radiation oncologist at UMC. She said sometimes she orders chemo and radiation at the same time, but because Rick's radiation will be in the lung cavity right up against the heart, they wouldn't do both at the same time. We have an appointment to see Dr. Chee on June 1, next Tuesday. Dr. Garland said it will take him some time to plan the radiation and it won't start immediately. She said if there is too long of a gap (more than 2 weeks), she will give Rick a round of chemo before the radiation starts. We will e-mail her after the appointment next Tuesday and make a decision about the chemo. We asked how long the radiation will run and she said it varies, so I guess we will learn more next Tuesday!
One interesting thing is that an analysis was done by Oncotech of how Rick's tumor responded to different types of chemo. Dr. Garland was dismissive of the analysis because it did not test pemetrexed (Alimta) which she said was one of the most effective drugs for treating meso and the analysis has not been approved by the FDA. I will send an e-mail to Sugarbaker asking why pemetrexed was not included in the test and let you know what he said.
I will post again next Tuesday after we see Dr. Chee.
Friday, May 21, 2010
Home
Hi All -
Dry heat never felt so good! The flight from Boston was delayed landing in Dallas and we missed our connection. There was a good bit of rushing from one gate to another - and although Rick was supposed to have a wheelchair, he ended up needing to take the tram from one terminal to another and walking from gate to gate (following the Tucson flights on the schedule) until we found someone who managed to get us booked for an evening flight. Luckily, we were able to fly standby on an even earlier flight and got into Tucson about 4 hours after we were scheduled to land. Otherwise the trip was fine but Rick did more walking than he had done since before the surgery.
Predictably, Rick is very tired today after yesterday's travel, but we are enjoying being home. The dogs were so happy to see us, although I'll bet they miss Tricia and Mike's two dogs. (I am sure Tricia and Mike are happy to have only two dogs again.)
We visit Linda Garland, the oncologist, on Thursday. We'll post what we learn after that appointment.
Sue
Dry heat never felt so good! The flight from Boston was delayed landing in Dallas and we missed our connection. There was a good bit of rushing from one gate to another - and although Rick was supposed to have a wheelchair, he ended up needing to take the tram from one terminal to another and walking from gate to gate (following the Tucson flights on the schedule) until we found someone who managed to get us booked for an evening flight. Luckily, we were able to fly standby on an even earlier flight and got into Tucson about 4 hours after we were scheduled to land. Otherwise the trip was fine but Rick did more walking than he had done since before the surgery.
Predictably, Rick is very tired today after yesterday's travel, but we are enjoying being home. The dogs were so happy to see us, although I'll bet they miss Tricia and Mike's two dogs. (I am sure Tricia and Mike are happy to have only two dogs again.)
We visit Linda Garland, the oncologist, on Thursday. We'll post what we learn after that appointment.
Sue
Tuesday, May 18, 2010
Cleared to fly
Hi All
Rick saw Sugarbaker this a.m. and was released to the care of Linda Garland in Tucson. We reviewed the surgery and follow-up. Sugarbaker said that the tumor in Rick's lung had grown so large that it was a very tricky surgery and there are times when the tumor is that large that he decides that it can't be removed and closes without doing anything. He said he can remove 60% of the really large ones and closes 40% of the time - and that Rick was right on the edge between the two. Luckily, he got the whole thing out and is confident that Rick will do very well. (I am sure all those powerful prayers and good wishes on April 15 made the difference.) We read through the follow-up on all the lymph nodes that were removed and although DaSilva had reported earlier that there were two nodes that came back positive for meso, the actual report said only one that was right next to the tumor.
Sugarbaker said Rick will need radiation, but he doesn't think he will need chemo. It's funny, but that made me nervous instead of relieved. I want them to throw everything they have at this ugly cancer! I am still impressed by how approachable and personable Sugarbaker is. I call him Sugarcoater because he always insists on taking a positive perspective on everything..Which is a good thing...but for some reason I need to have every possible negative thing examined too. I just don't want the doctors to miss a single molecule of information that could save Rick's life.
We will return here for follow-up tests and visit in October. When I consider all that has happened in our lives since the end of February when Rick first had the fluid drained from his plerua - until now - it's incomprehensible. We have traveled a very bumpy and winding road that seems to have delivered Rick from the death sentence that his internist gave him. Please don't stop those prayers though. We always need them and we still need to find out what the oncologist in Tucson has in store for Rick!
Thanks to all of you for your continuing support.
Rick saw Sugarbaker this a.m. and was released to the care of Linda Garland in Tucson. We reviewed the surgery and follow-up. Sugarbaker said that the tumor in Rick's lung had grown so large that it was a very tricky surgery and there are times when the tumor is that large that he decides that it can't be removed and closes without doing anything. He said he can remove 60% of the really large ones and closes 40% of the time - and that Rick was right on the edge between the two. Luckily, he got the whole thing out and is confident that Rick will do very well. (I am sure all those powerful prayers and good wishes on April 15 made the difference.) We read through the follow-up on all the lymph nodes that were removed and although DaSilva had reported earlier that there were two nodes that came back positive for meso, the actual report said only one that was right next to the tumor.
Sugarbaker said Rick will need radiation, but he doesn't think he will need chemo. It's funny, but that made me nervous instead of relieved. I want them to throw everything they have at this ugly cancer! I am still impressed by how approachable and personable Sugarbaker is. I call him Sugarcoater because he always insists on taking a positive perspective on everything..Which is a good thing...but for some reason I need to have every possible negative thing examined too. I just don't want the doctors to miss a single molecule of information that could save Rick's life.
We will return here for follow-up tests and visit in October. When I consider all that has happened in our lives since the end of February when Rick first had the fluid drained from his plerua - until now - it's incomprehensible. We have traveled a very bumpy and winding road that seems to have delivered Rick from the death sentence that his internist gave him. Please don't stop those prayers though. We always need them and we still need to find out what the oncologist in Tucson has in store for Rick!
Thanks to all of you for your continuing support.
Monday, May 17, 2010
Last few days in Boston
Hi All -
Thanks to all of you who have faithfully followed the blog and have sent prayers, good wishes, and supportive comments. Rick continues to get stronger every day. We visit the doctors again tomorrow and then should be cleared to return to Tucson on Thursday. It will be a very tiring journey for Rick, but when we get home he can rest in his own bed with his dogs at his side.
We drove to a beach in Quincy today and had a lunch of fried clams and clam fritters in the chilly but invigorating ocean air. It wasn't our usual healthy lunch, but tasted wonderful. Suzi and Timm returned to New Jersey this afternoon and we are counting the last few days here in Boston.
I will post tomorrow following the doctor's visit. After that, I will post if there is news - hopefully all good news. Otherwise I won't be posting every day. Again, thanks to all of you for standing beside us and lending support.
Sue
Thanks to all of you who have faithfully followed the blog and have sent prayers, good wishes, and supportive comments. Rick continues to get stronger every day. We visit the doctors again tomorrow and then should be cleared to return to Tucson on Thursday. It will be a very tiring journey for Rick, but when we get home he can rest in his own bed with his dogs at his side.
We drove to a beach in Quincy today and had a lunch of fried clams and clam fritters in the chilly but invigorating ocean air. It wasn't our usual healthy lunch, but tasted wonderful. Suzi and Timm returned to New Jersey this afternoon and we are counting the last few days here in Boston.
I will post tomorrow following the doctor's visit. After that, I will post if there is news - hopefully all good news. Otherwise I won't be posting every day. Again, thanks to all of you for standing beside us and lending support.
Sue
Saturday, May 15, 2010
More of the same
Another good day, although Rick was a bit tired after the big movie field trip yesterday. Suzi and Timm came today and will visit until Tuesday a.m. David and Wendy also came by for a few hours after their son CJ's lacrosse game. The company is a good diversion, even though it may wear him out. No big deal - he'll just sleep 13 hours tonight instead of the usual 12!
Friday, May 14, 2010
It's Friday in Boston too!
Often on Fridays, Rick and I go to a movie, so that is what we did today. There is a theater directly across the street, so it wasn't a big journey and today we caught the mantinee, but it was fun. When we went in it was cold and raining and when we came out, it was sunny and warm, so we sat outside for awhile. All is good here.
Thursday, May 13, 2010
Visiting Nurse #2
Hi all -
Recovery continues without exceptional events. The routine goes something like this - sleep, eat, walk, repeat.
A visiting nurse from Brigham and Women's visited yesterday and a nurse from the International Mesothelioma Program visited today. I was reminded of Annabel's (often repeated) observation that you can't just send anyone into the home. Home visits require special training and expertise. Both of these nurses were skilled and nice (although #1 showed up without appointment and #2 was the ICU nurse who received Rick directly from surgery and didn't remember that she had taken care of him.)...They took temperatures, blood pressures, reviewed medications and then they were finished. Their behavior was the same as it would have been if they walked into his hospital room to take vitals and then left. Thankfully, we don't need any special support but I wanted to ask them why they were part of the home visiting program and why they think home visits are important. They need a skilled mentor! Not my job, so we move on.
Recovery continues without exceptional events. The routine goes something like this - sleep, eat, walk, repeat.
A visiting nurse from Brigham and Women's visited yesterday and a nurse from the International Mesothelioma Program visited today. I was reminded of Annabel's (often repeated) observation that you can't just send anyone into the home. Home visits require special training and expertise. Both of these nurses were skilled and nice (although #1 showed up without appointment and #2 was the ICU nurse who received Rick directly from surgery and didn't remember that she had taken care of him.)...They took temperatures, blood pressures, reviewed medications and then they were finished. Their behavior was the same as it would have been if they walked into his hospital room to take vitals and then left. Thankfully, we don't need any special support but I wanted to ask them why they were part of the home visiting program and why they think home visits are important. They need a skilled mentor! Not my job, so we move on.
Wednesday, May 12, 2010
Starbucks today, but no coffee
Hi all
It is so good to be out of the hospital. Rick needs to eat a lot of protein and his brother got the idea to bring him lots of packages of salmon and a George Foreman grill. Crazy idea - and now we are cooking every meal on the grill! Who knew it could be so easy to grill salmon?
Rick is making great progress - eating and sleeping well. He still is very weak and he is taking so many drugs that make him light headed, sleepy, and nauseous (they all say that on the label). Often he thinks he can't go for a walk, but once I get him up and going, it is hard to stop him. This morning I convinced him to take the elevator, walk out of the building, and go to the Starbucks (which is the very next door) to buy a newspaper. He is limited to one liter of fluid a day and every ounce is supposed to have calories, so he hasn't been drinking coffee. The papers were sold out, but instead of heading back to the apartment, Rick just kept walking and circled the entire city block! It is cold and damp out, but he smiled through the entire walk and wasn't out of breath at all. He may be thin, but he is still very strong and once he discontinues some of these medications I think he will feel so much better.
Thanks for all your calls and good wishes.
Sue
It is so good to be out of the hospital. Rick needs to eat a lot of protein and his brother got the idea to bring him lots of packages of salmon and a George Foreman grill. Crazy idea - and now we are cooking every meal on the grill! Who knew it could be so easy to grill salmon?
Rick is making great progress - eating and sleeping well. He still is very weak and he is taking so many drugs that make him light headed, sleepy, and nauseous (they all say that on the label). Often he thinks he can't go for a walk, but once I get him up and going, it is hard to stop him. This morning I convinced him to take the elevator, walk out of the building, and go to the Starbucks (which is the very next door) to buy a newspaper. He is limited to one liter of fluid a day and every ounce is supposed to have calories, so he hasn't been drinking coffee. The papers were sold out, but instead of heading back to the apartment, Rick just kept walking and circled the entire city block! It is cold and damp out, but he smiled through the entire walk and wasn't out of breath at all. He may be thin, but he is still very strong and once he discontinues some of these medications I think he will feel so much better.
Thanks for all your calls and good wishes.
Sue
Tuesday, May 11, 2010
Nothing special is good
Hi -
Thanks to all of you who have send so many cards, e-mails, and text messages to support us in this process. The clinic visit today was uneventful - which is great. If Rick's recovery continues on this good path, we visit again on Tuesday and then will be released to return to Tucson on Thursday, May 20.
Many of you have been asking when you can call to chat with Rick. Rick is answering phone calls when he has the energy to talk. He is very weak and has a quiet, hoarse voice because of the ulcers in his esophagus. He also sleeps a lot and the ringer is turned off during naps. So call if you want and he will answer if he can, but please remember to keep the calls short. Also, remember the three hour time difference and that Rick is down for the night before 9 p.m., Boston time. Thank you.
Sue
Thanks to all of you who have send so many cards, e-mails, and text messages to support us in this process. The clinic visit today was uneventful - which is great. If Rick's recovery continues on this good path, we visit again on Tuesday and then will be released to return to Tucson on Thursday, May 20.
Many of you have been asking when you can call to chat with Rick. Rick is answering phone calls when he has the energy to talk. He is very weak and has a quiet, hoarse voice because of the ulcers in his esophagus. He also sleeps a lot and the ringer is turned off during naps. So call if you want and he will answer if he can, but please remember to keep the calls short. Also, remember the three hour time difference and that Rick is down for the night before 9 p.m., Boston time. Thank you.
Sue
Morning in Boston
Hi All,
Dad's last 24 hours went really well. He ate and walked and rested. As evidenced by the picture he seems really happy to be home!
Dad has a clinic appointment today to make sure all his numbers are still good, and another one on Friday. The visiting nurse called this morning to schedule some appointments to make sure things are good there as well.
We will leave you with this picture and hopefully another boring day after he visits the clinic!
Dad's last 24 hours went really well. He ate and walked and rested. As evidenced by the picture he seems really happy to be home!
Dad has a clinic appointment today to make sure all his numbers are still good, and another one on Friday. The visiting nurse called this morning to schedule some appointments to make sure things are good there as well.
We will leave you with this picture and hopefully another boring day after he visits the clinic!
Monday, May 10, 2010
Free, Free, Free at last!
Hi all -
Rick was released from the hospital this morning. I didn't make him walk to the apartment this time - but he said it is his goal to walk the three-quarters of a mile to the hospital on his last visit before we go back to Tucson. He took his first shower that didn't require taping baggies to multiple IV's and he got to peel off the dozen or so leads that have been stuck to his chest and back for the last three weeks. Men have such a disadvantage when pulling sticky things off their hairy chests. (Now he knows what getting waxed feels like.)
The process was exhausting but he has walked the hallways of 180 Brookline several times and has had several meals. He is supposed to eat only small meals, so in an effort to catch up on the nutrition deficit, it feels like he is eating constantly. (That is good news.)
Rick's brother David is coming up to visit this evening for a short time. Other than that, we will be eating, resting, and walking. No excitement for awhile - which is a very excellent thing.
Rick was released from the hospital this morning. I didn't make him walk to the apartment this time - but he said it is his goal to walk the three-quarters of a mile to the hospital on his last visit before we go back to Tucson. He took his first shower that didn't require taping baggies to multiple IV's and he got to peel off the dozen or so leads that have been stuck to his chest and back for the last three weeks. Men have such a disadvantage when pulling sticky things off their hairy chests. (Now he knows what getting waxed feels like.)
The process was exhausting but he has walked the hallways of 180 Brookline several times and has had several meals. He is supposed to eat only small meals, so in an effort to catch up on the nutrition deficit, it feels like he is eating constantly. (That is good news.)
Rick's brother David is coming up to visit this evening for a short time. Other than that, we will be eating, resting, and walking. No excitement for awhile - which is a very excellent thing.
Sunday, May 9, 2010
Still a go for Monday
Hi All -
Holly and Bucky went back to San Diego this morning and Rick and I have spent a quiet day watching Rick take in calories and walk laps around the tower. He has traveled 1/2 mile so far today. He is well enough to be bored, even though he is still very tired. (Remember, 24 laps is a mile and is curiously also the definition for mind numbing boredom!)
They are trying to back off on some of the meds. His blood pressure is a bit low, so they have had to reduce the lopressor - which is a bit of a concern because the lopressor has been keeping his heart out of atrial fibrillation. As his fabulous nurse Pam said, with 18 hours to go till freedom, we don't want anything to mess up. They are watching the numbers carefully and we are keeping our fingers crossed.
So say your prayers and keep your fingers crossed that all is well and that Rick can move to the apartment tomorrow. His brother David is coming up to help us move. Everyone feels such a need to help that David called to say he is bringing lots of salmon (protein) and mashed potatoes (potassium). Rick is still limited to a "mechanical soft" diet - which nurse Pam says is basically anything you can eat if you have no teeth. And yes, salmon can be eaten with no teeth!
Holly and Bucky went back to San Diego this morning and Rick and I have spent a quiet day watching Rick take in calories and walk laps around the tower. He has traveled 1/2 mile so far today. He is well enough to be bored, even though he is still very tired. (Remember, 24 laps is a mile and is curiously also the definition for mind numbing boredom!)
They are trying to back off on some of the meds. His blood pressure is a bit low, so they have had to reduce the lopressor - which is a bit of a concern because the lopressor has been keeping his heart out of atrial fibrillation. As his fabulous nurse Pam said, with 18 hours to go till freedom, we don't want anything to mess up. They are watching the numbers carefully and we are keeping our fingers crossed.
So say your prayers and keep your fingers crossed that all is well and that Rick can move to the apartment tomorrow. His brother David is coming up to help us move. Everyone feels such a need to help that David called to say he is bringing lots of salmon (protein) and mashed potatoes (potassium). Rick is still limited to a "mechanical soft" diet - which nurse Pam says is basically anything you can eat if you have no teeth. And yes, salmon can be eaten with no teeth!
Saturday, May 8, 2010
The potential of Monday!
Good news keeps on coming. Dad had a great dinner last night, a great breakfast this morning, and is sitting and eating lunch with Mom for the first time in almost 4 weeks. He slept solidly through the night (first time for that too) and is feeling great.
Good news from the doctors this morning. If all continues to go well, Dad will be going home on Monday! They will want him to come in for a follow up appointment on Tuesday and again on Friday. If all goes well there then we can begin a discussion on heading back to Tucson!!!!!
Today and tomorrow will be a trial for Dad, taking all pills by mouth and getting up and moving like he was home. Here is a picture of Dad, fully dressed and waving his cane in his best "get those kids off my lawn" pose. He is so happy.
Friday, May 7, 2010
Dad's First Real Meal
It is 5:30 pm here in Boston and we just got a knock on the room door. "Who was it?" you ask. It was food services arriving with the dinner tray for the first time in 22 days. Dad's eyes got really big and when he opened it, there was Salmon, Mashed Potatoes, Applesauce and V8 Juice (unfortunately warm and low sodium, you can't have everything.)
We snapped a picture, sorry for the terrible quality as we only had an iphone. Dad is savoring every bite and Mom just said she thinks he gained back a pound already.
We snapped a picture, sorry for the terrible quality as we only had an iphone. Dad is savoring every bite and Mom just said she thinks he gained back a pound already.
food glorious food!
So it has been a banner day so far for Dad. He began it this morning with mashed potatoes, followed it up with a banana at 10 and a bowl of chicken soup from AuBonPain. He has also switched from Boost supplements to Ensure (less sweet, he likes it much better!) and is approaching 1000 calories for the day before dinner! This is exactly what he needs to gain some weight and to make up for the 3 weeks of not eating real food (I'm not counting the tube feedings because that's not really eating!)
He seems so happy today and is currently sitting and discussing basketball with Bucky. We are all sitting in the room waiting for the nurse to come and hook his potassium drip up so we can take a good walk off the floor and into the rest of the hospital. We have been waiting so long for good news and now we have had two days in a row.
Keep the good thoughts and prayers coming! We need more days like this.
He seems so happy today and is currently sitting and discussing basketball with Bucky. We are all sitting in the room waiting for the nurse to come and hook his potassium drip up so we can take a good walk off the floor and into the rest of the hospital. We have been waiting so long for good news and now we have had two days in a row.
Keep the good thoughts and prayers coming! We need more days like this.
Thursday, May 6, 2010
A banana never tasted so sweet
Rick began the day in the intensive care unit. (No cell phones and two visitors at a time. Call before you come in and we may make you wait outside the door for 30 minutes!) Holly got up very early and dashed to the hospital, bringing shoes for Rick to walk in and a heart set to make it a great day for her dad.
And so it was. We have had a great day. Rick walked 5 times and after 24 hours of drinking the high protein drink, Boost, he was allowed to have a banana. He tried to make the elongated yellow fruit last, but it was gone so quickly. He had to just sit back and smile at the memory of the sweetness of it's taste! Isn't it curious, how quickly we can be reduced to the basics. A smile or a hearty walk around the hospital corridor can be such a gift. We have been on a good path today. Pray that it continues.
Sue
And so it was. We have had a great day. Rick walked 5 times and after 24 hours of drinking the high protein drink, Boost, he was allowed to have a banana. He tried to make the elongated yellow fruit last, but it was gone so quickly. He had to just sit back and smile at the memory of the sweetness of it's taste! Isn't it curious, how quickly we can be reduced to the basics. A smile or a hearty walk around the hospital corridor can be such a gift. We have been on a good path today. Pray that it continues.
Sue
Wednesday, May 5, 2010
Life in the ICU
Hi all -
Rick had a good night and is generally doing well. He is feeling like he is short of breath so the doctors are checking to be certain there is no fluid accumulating on his good lung or around his heart. He is allowed to drink Boost and small amounts of juice today and he will be walking around the totally boring loop in the center of the tower (24 loops equals a mile). Holly, Bucky, and I visited him this morning, but he kicked us all out because he wanted a day with Bob Van Putten. David Eck will be coming to visit for a little while this afternoon - and I think some "guy time" will do Rick's outlook a lot of good. It's hard to keep his spirits up after 21 days in the hospital and we are lucky to have David and Bob here today.
Rick had a good night and is generally doing well. He is feeling like he is short of breath so the doctors are checking to be certain there is no fluid accumulating on his good lung or around his heart. He is allowed to drink Boost and small amounts of juice today and he will be walking around the totally boring loop in the center of the tower (24 loops equals a mile). Holly, Bucky, and I visited him this morning, but he kicked us all out because he wanted a day with Bob Van Putten. David Eck will be coming to visit for a little while this afternoon - and I think some "guy time" will do Rick's outlook a lot of good. It's hard to keep his spirits up after 21 days in the hospital and we are lucky to have David and Bob here today.
Tuesday, May 4, 2010
Surgical Procedure today
Hi all -
Rick's hematocrit continued to fall through the night in spite of receiving two units of blood yesterday. It was clear he had bleeding somewhere, so the surgical AND the GI team scoped his GI system again to try to find the bleed. They believe it is his esophagus - irritation from all the tubes they have inserted, removed, inserted, etc. The stomach is working, but sluggish. The pyloris is open. The intestines are clear and churning away. The lung is healing fabulously. So except for the bleeding - which is serious - his GI system seems to be recovering. (Remarkable considering all the poking and probing that has been done to his system.) Currently, he is in recovery (about 5 hours now) waiting for a bed in the ICU. As soon as a bed is available, then they will move him upstairs. He can have nothing by mouth for 2 hours - not even an ice chip! Then tomorrow afternoon they will allow him be begin with clears and then liquid nutrition (Boost).
It won't be any surprise to learn that at times Rick has been a bit depressed about all that has happened. Yesterday, I convinced him to call Bob Van Putten to talk about how he was feeling. The next thing I knew, Bob bought a ticket and he is on his way to Boston right now. The visit will be a good tonic for Rick and it will be great for me to have a doctor on my team to talk with all the many doctors who see Rick daily.
It is unfortunate that all the previous procedures caused a bleed in Rick's esophagus, but otherwise, all the news from the scope was good. Let's hope he heals quickly and we can move on.
Sue
Rick's hematocrit continued to fall through the night in spite of receiving two units of blood yesterday. It was clear he had bleeding somewhere, so the surgical AND the GI team scoped his GI system again to try to find the bleed. They believe it is his esophagus - irritation from all the tubes they have inserted, removed, inserted, etc. The stomach is working, but sluggish. The pyloris is open. The intestines are clear and churning away. The lung is healing fabulously. So except for the bleeding - which is serious - his GI system seems to be recovering. (Remarkable considering all the poking and probing that has been done to his system.) Currently, he is in recovery (about 5 hours now) waiting for a bed in the ICU. As soon as a bed is available, then they will move him upstairs. He can have nothing by mouth for 2 hours - not even an ice chip! Then tomorrow afternoon they will allow him be begin with clears and then liquid nutrition (Boost).
It won't be any surprise to learn that at times Rick has been a bit depressed about all that has happened. Yesterday, I convinced him to call Bob Van Putten to talk about how he was feeling. The next thing I knew, Bob bought a ticket and he is on his way to Boston right now. The visit will be a good tonic for Rick and it will be great for me to have a doctor on my team to talk with all the many doctors who see Rick daily.
It is unfortunate that all the previous procedures caused a bleed in Rick's esophagus, but otherwise, all the news from the scope was good. Let's hope he heals quickly and we can move on.
Sue
Monday, May 3, 2010
Brilliant sunshine is blazing through Rick's window
Hi all -
Rick's dobhoff was clogged and so the decision was made to try 40 cc's of Boost every hour. It is now 7 hours later and when they checked the stomach residual, there was none left - so that means Rick's body processed 16 oz of Boost. This is very good news. He will continue to drink the 40 cc's every hour until bedtime.
Rick has received a unit of blood because he is anemic. He is scheduled to get a second unit but it hasn't come yet. The blood will make it easier for him to breathe and he won't feel so weak and cold. He also took a shower today and washed his hair. Being clean makes such a difference.
Right now the sun is blazing through is window and he is sitting in the chair, wrapped in blankets and snoozing. A good day. Keep your fingers crossed that he digestion continues to improve without a backup. If that happens, the NG tube will probably be removed tomorrow and he will be a completely new man.
Rick's dobhoff was clogged and so the decision was made to try 40 cc's of Boost every hour. It is now 7 hours later and when they checked the stomach residual, there was none left - so that means Rick's body processed 16 oz of Boost. This is very good news. He will continue to drink the 40 cc's every hour until bedtime.
Rick has received a unit of blood because he is anemic. He is scheduled to get a second unit but it hasn't come yet. The blood will make it easier for him to breathe and he won't feel so weak and cold. He also took a shower today and washed his hair. Being clean makes such a difference.
Right now the sun is blazing through is window and he is sitting in the chair, wrapped in blankets and snoozing. A good day. Keep your fingers crossed that he digestion continues to improve without a backup. If that happens, the NG tube will probably be removed tomorrow and he will be a completely new man.
Raining, warm, humid and still no drinking water
Hi all -
This a.m. we learned that Rick's dobhoff is clogged and they didn't think they could unclog it, so they took it out. They agreed that since the dobhoff was dumping nourishment into the stomach anyway, we can try having Rick drink 40 cc's of boost by mouth instead. Of course, it will reduce his nourishment a bit because he won't be drinking while he is asleep, but who really sleeps for any extended time in the hospital anyway? They left the NG tube in, clamped, for the next day in case there is a jam up and they need to take the fluid off of his stomach. They know the NG tube is causing irritation and some bleeding, but the team thinks it is better to leave it for now rather than pull it now and have to reinsert in this afternoon - or worse, risk Rick vomiting again. He will also get two units of blood today because his hematocrit is a bit below the cutoff. He is also cold and tired, and the blood will give him a boost.
I hope this isn't more detail than you want to know. We have co-workers, friends, and family reading the blog, some of whom are medical professionals who want detail. If it's more information about Rick's digestive system than you ever wanted to know - avert your eyes when you sense the details are coming.
Thanks to all of you for the many cards, good wishes, phone calls, prayers. Please keep them coming.
Sue
This a.m. we learned that Rick's dobhoff is clogged and they didn't think they could unclog it, so they took it out. They agreed that since the dobhoff was dumping nourishment into the stomach anyway, we can try having Rick drink 40 cc's of boost by mouth instead. Of course, it will reduce his nourishment a bit because he won't be drinking while he is asleep, but who really sleeps for any extended time in the hospital anyway? They left the NG tube in, clamped, for the next day in case there is a jam up and they need to take the fluid off of his stomach. They know the NG tube is causing irritation and some bleeding, but the team thinks it is better to leave it for now rather than pull it now and have to reinsert in this afternoon - or worse, risk Rick vomiting again. He will also get two units of blood today because his hematocrit is a bit below the cutoff. He is also cold and tired, and the blood will give him a boost.
I hope this isn't more detail than you want to know. We have co-workers, friends, and family reading the blog, some of whom are medical professionals who want detail. If it's more information about Rick's digestive system than you ever wanted to know - avert your eyes when you sense the details are coming.
Thanks to all of you for the many cards, good wishes, phone calls, prayers. Please keep them coming.
Sue
Sunday, May 2, 2010
Finally, the PT visited
The Physical Therapist, Paul, came to visit Rick today and gave him a workout he can do with his stretchy band, while sitting in the chair. He showed Rick 4 arm exercises today and will come back on Tuesday to show him leg exercises. Although the brief workout tired Rick, his eyes were just glowing to be working out again.
Dr. Shaw is the lucky thoracic doctor on call today. He came by because he wanted to see the liquid that was pulled back from Rick's stomach. He said he thinks it may be some blood but it is mixed with bile and normal stomach acid. He and Ann Mongiu discussed changing Rick's cappucino feed because he thinks there is another one that is more soothing to the stomach. It has less calories per cc though, so they decided to take it back to the team.
Dr. Shaw is the lucky thoracic doctor on call today. He came by because he wanted to see the liquid that was pulled back from Rick's stomach. He said he thinks it may be some blood but it is mixed with bile and normal stomach acid. He and Ann Mongiu discussed changing Rick's cappucino feed because he thinks there is another one that is more soothing to the stomach. It has less calories per cc though, so they decided to take it back to the team.
And we wait
Hi all -
Rick continues to receive nutrition via the cappucino colored liquid that drips slowly through a tube and into his stomach. He is receiving 40 cc's an hour or about a liter a day and that is adequate nutrition - but based on the residual when they do the pull backs, the amount he is absorbing has not gotten great enough to switch to eating regular food yet. They are watching the numbers - and the issue of blood in the pull back has recurred. I am sure any medical people reading this will catch that I am not saying this exactly right, but as I understand it, they don't think it's new bleeding but rather older blood because it is maroon from the acid in the stomach. They continue to say that they are sure the stomach will resolve on it's own, given time. So, we wait.
Dawn McNally Cobb came from Maine to visit us for a bit today. It was so wonderful to see her and to have a chance to catch up on family news. She has always been such a bright ray of sunshine and it was good to see her. It still hurts Rick to talk, so he was mostly a listener, but as we chatted on, he couldn't resist joining the conversation and that was good for him.
Have a wonderful Sunday. It's supposed to be a record setting 90 degrees in Boston today. Drink a glass of water for us. There was a break in a huge water main here in Boston yesterday afternoon and we are not allowed to drink the water without boiling it. The stores ran out of bottled water in a nanosecond - but we managed to buy 5 bottles of water. The hospital has its own water supply and so we can drink the water there - but other places like the Starbucks were selling the Sunday newspaper but no coffee. They say we may have drinkable water again by Tuesday night. Crazy!
Rick continues to receive nutrition via the cappucino colored liquid that drips slowly through a tube and into his stomach. He is receiving 40 cc's an hour or about a liter a day and that is adequate nutrition - but based on the residual when they do the pull backs, the amount he is absorbing has not gotten great enough to switch to eating regular food yet. They are watching the numbers - and the issue of blood in the pull back has recurred. I am sure any medical people reading this will catch that I am not saying this exactly right, but as I understand it, they don't think it's new bleeding but rather older blood because it is maroon from the acid in the stomach. They continue to say that they are sure the stomach will resolve on it's own, given time. So, we wait.
Dawn McNally Cobb came from Maine to visit us for a bit today. It was so wonderful to see her and to have a chance to catch up on family news. She has always been such a bright ray of sunshine and it was good to see her. It still hurts Rick to talk, so he was mostly a listener, but as we chatted on, he couldn't resist joining the conversation and that was good for him.
Have a wonderful Sunday. It's supposed to be a record setting 90 degrees in Boston today. Drink a glass of water for us. There was a break in a huge water main here in Boston yesterday afternoon and we are not allowed to drink the water without boiling it. The stores ran out of bottled water in a nanosecond - but we managed to buy 5 bottles of water. The hospital has its own water supply and so we can drink the water there - but other places like the Starbucks were selling the Sunday newspaper but no coffee. They say we may have drinkable water again by Tuesday night. Crazy!
Saturday, May 1, 2010
It's summer in Boston
Hi all -
Boston people are interesting. They spend most of the year bundled in wool and wrapped in scarves. Then the sun comes out, the weather warms to 75 and out of nowhere, beautiful girls in strappy sundresses appear everywhere! It was such a beautiful day that we asked if Rick could go outside. We found a wheelchair (they are everywhere) and rolled him out the front door and down the sidewalk to a parking lot that had a beautiful garden of tulips and flowering cherry trees. This is a huge medical complex and they did not create any meditative garden areas for the patients...but we did out best. The trip was very tiring, but still when Rick got back to the 11th floor, he managed to take several walks and a very long and satisfying shower today. By 8:00 tonight, he was so tired he was down for the night!
The cappucino drip continues to give him the nourishment he needs. When they pulled back the residual in his stomach last night they got 400 cc's of red fluid (not good) and four hours later they got 500 cc's of red fluid (worse) - but then this a.m. they pulled 150 cc's that was all cappucino. The drip has continued throughout the day. His system is still sluggish and he is not able to process the drip quickly enough if they up the rate on the drip - but at 40 cc's an hour, he does fine.
Tomorrow is a new day. He is positive and focused again and feels his system is finally waking up. When he heard one of the other people who have had the same surgery (except right lung) had walked 10 laps around the tower (24 laps is a mile) he got right out of his chair and polished off 4 laps. He is still very weak but making outstanding efforts to be well again.
Sue
Boston people are interesting. They spend most of the year bundled in wool and wrapped in scarves. Then the sun comes out, the weather warms to 75 and out of nowhere, beautiful girls in strappy sundresses appear everywhere! It was such a beautiful day that we asked if Rick could go outside. We found a wheelchair (they are everywhere) and rolled him out the front door and down the sidewalk to a parking lot that had a beautiful garden of tulips and flowering cherry trees. This is a huge medical complex and they did not create any meditative garden areas for the patients...but we did out best. The trip was very tiring, but still when Rick got back to the 11th floor, he managed to take several walks and a very long and satisfying shower today. By 8:00 tonight, he was so tired he was down for the night!
The cappucino drip continues to give him the nourishment he needs. When they pulled back the residual in his stomach last night they got 400 cc's of red fluid (not good) and four hours later they got 500 cc's of red fluid (worse) - but then this a.m. they pulled 150 cc's that was all cappucino. The drip has continued throughout the day. His system is still sluggish and he is not able to process the drip quickly enough if they up the rate on the drip - but at 40 cc's an hour, he does fine.
Tomorrow is a new day. He is positive and focused again and feels his system is finally waking up. When he heard one of the other people who have had the same surgery (except right lung) had walked 10 laps around the tower (24 laps is a mile) he got right out of his chair and polished off 4 laps. He is still very weak but making outstanding efforts to be well again.
Sue
Friday, April 30, 2010
Looks like cappucino
Hi all -
The tube feeding is working well so far. They allow the nutrition to drip into Rick's stomach for about 4 hours and then they clamp off the feeding tube and check his stomach to see how much of the liquid is hanging around instead of working it's way through to the intestine. So far today he is processing almost all of the liquid tube feed. It looks like a cappucino and finally Rick is not hungry anymore. He feels like he has energy because he is getting nourishment. In addition, his mind is more clear than it has been in two weeks. He is speaking clearly and remembering what has happened accurately. That is such a welcome thing for all of us. Holly and Bucky arrived last night and after a visit with Rick, he sent them off to peruse the fancy shops on Newberry Street.
The tube feeding is working well so far. They allow the nutrition to drip into Rick's stomach for about 4 hours and then they clamp off the feeding tube and check his stomach to see how much of the liquid is hanging around instead of working it's way through to the intestine. So far today he is processing almost all of the liquid tube feed. It looks like a cappucino and finally Rick is not hungry anymore. He feels like he has energy because he is getting nourishment. In addition, his mind is more clear than it has been in two weeks. He is speaking clearly and remembering what has happened accurately. That is such a welcome thing for all of us. Holly and Bucky arrived last night and after a visit with Rick, he sent them off to peruse the fancy shops on Newberry Street.
Thursday, April 29, 2010
Hi Sue, I have been following things daily but it took me a while to get back on to post. Please say hi to Rick for me and let hiim know that today the Department of Administration granted CPSA a stay on the award to Centpatico in GSA 3. It means the DOA believes that CPSA's appeal has enough merit to take a hard look at it.
This information is pretty inconsequential compared to the battle that you and Rick and your family are waging but I though I would share this with you.
More importantly, however, is to tell him how much all of us think of him and the battle and how often we try to send good thoughts to Boston.
Fred
This information is pretty inconsequential compared to the battle that you and Rick and your family are waging but I though I would share this with you.
More importantly, however, is to tell him how much all of us think of him and the battle and how often we try to send good thoughts to Boston.
Fred
Quick update
Hi all -
I just want to let you know that the Doctors decided to take a conservative approach to feeding. They have turned off the stomach suction and hooked up the tube feed and are giving him 50 cc's an hour for 4 hours. That will put 200 cc's in his system. Then at 7 o'clock (here) they will stop the feed and suck out his stomach. that way they will know if any of the food is passing through the pesky pyloris. If they get 100 cc's or less, then they will may just continue to give Rick nourishment this way - waiting for the pyloris to return to normal function.
A lot of you are writing to ask how I am doing and I appreciate your concern. I have learned something about myself throughout this process. Primarily I have learned that I am a cryer. Anything goes wrong, I have to shed a few tears and then I am ok to move on. I don't think I was always like this, but maybe I have been...It's just that my life has been so good that I haven't needed to cry much.
I have also learned that I love to learn and I keep finding this process so interesting. It is terrible, horrible, evil, cruel - but at the same time, interesting. I now am on a close and personal basis with Rick's pyloris. I am visualizing normal function. I don't care how essential it is - phlegm is definitely disgusting! Rick is lucky because he has no problem bringing the phelgm up out of his lung. Most of the other patients have to have a procedure to suck the mucus out of their lungs - but Rick has had no problem with that. I also have discovered that I am an optimist. I always wake up thinking today will be a good one.....even though many days have tested my resolve.
Thank you for all the good wishes. We need and appreciate the support. One more thing - Rick's doctor, David Sugarbaker was on the front page of the Boston Herald today and his 14 year old patient will be on the news tonight. Her name is Brianna Ranzino. Google the story - it's very interesting.
Sue
I just want to let you know that the Doctors decided to take a conservative approach to feeding. They have turned off the stomach suction and hooked up the tube feed and are giving him 50 cc's an hour for 4 hours. That will put 200 cc's in his system. Then at 7 o'clock (here) they will stop the feed and suck out his stomach. that way they will know if any of the food is passing through the pesky pyloris. If they get 100 cc's or less, then they will may just continue to give Rick nourishment this way - waiting for the pyloris to return to normal function.
A lot of you are writing to ask how I am doing and I appreciate your concern. I have learned something about myself throughout this process. Primarily I have learned that I am a cryer. Anything goes wrong, I have to shed a few tears and then I am ok to move on. I don't think I was always like this, but maybe I have been...It's just that my life has been so good that I haven't needed to cry much.
I have also learned that I love to learn and I keep finding this process so interesting. It is terrible, horrible, evil, cruel - but at the same time, interesting. I now am on a close and personal basis with Rick's pyloris. I am visualizing normal function. I don't care how essential it is - phlegm is definitely disgusting! Rick is lucky because he has no problem bringing the phelgm up out of his lung. Most of the other patients have to have a procedure to suck the mucus out of their lungs - but Rick has had no problem with that. I also have discovered that I am an optimist. I always wake up thinking today will be a good one.....even though many days have tested my resolve.
Thank you for all the good wishes. We need and appreciate the support. One more thing - Rick's doctor, David Sugarbaker was on the front page of the Boston Herald today and his 14 year old patient will be on the news tonight. Her name is Brianna Ranzino. Google the story - it's very interesting.
Sue
The rollercoaster continues
Hi everyone -
Yesterday Rick's team ordered a radiology series with contrast. He had a CT with contrast a day or two ago and the contrast solution made it all the way through his system - but very slowly. This new study showed that his pyloris was not working at all and that it was shut. Small amounts of fluid trickled through - which explains why he was able to be ok with drinking 30 cc's of boost an hour, but when he moved up to 30 cc's every half hour, his stomach blew up and they had to reinsert the stomach drain.
Last night he had a procedure under general anesthesia where they put a camera into his stomach. They inserted a feeding tube and a balloon. (I have a hard time visualizing how this works.) They slowly ease the tube through the pyloris and slowly inflate the balloon. (The balloon is sausage shaped.) They leave it inflated for 15 minutes and then deflate it and pull it out. The feeding tube stays in the intestines (through the pyloris). They also inserted a scope into his right lung to have a look. Sugarbaker said the lung is healing extremely well.
Rick's sister Suzi and brother David sat with me through the long wait for the surgeons to come out. Sugarbaker said all was a success and he also called Tricia on his cell phone to explain what they did and the result. He said that there is a potential that the feeding tube might slide back into the stomach, but for now it was placed where they wanted it. Rick had a single tube feed this a.m. and a bit later, he felt the feeding tube curl in the back of his throat. DaSilva tried to undo the curl - and either the curl was caused by the tube slipping backwards through the pyloris or it slipped when he tried to untangle the curl in Rick's throat. The end result is that the feeding tube is in the stomach again and they can't use it for feeding.
Rick is keeping a good attitude and waiting for what comes next. They will probably need to pull the feeding tube out again and go through the insertion procedure again. It is a painful, nasty process and we are all discouraged to think he might have to go through that again. The unanswered question is whether the pyloris has stayed open. (There is no magical camera to look through without another procedure under anesthetic.)
Sugarbaker is out of town and DaSilva is making the calls. I asked to have the GI team involved too. We are waiting to see what happens next.
Just FYI, we have quite a team here. We have Dr. Sugarbaker's team of an associate, a fellow, and many residents. We also have a GI team who visit Rick almost daily and are consulted for most decisions (although the surgeons have the final say). Also, the thoracic floor has their own team of attending physicans who oversee Rick's care day-to-day, and they are very involved. The nutritional consult is because he hasn't eaten in so long, and the physical therapy consult is to make sure he is moving his body through a full range of motion and doing exercises that he can do in bed. He walks 4 or 5 times a day, but that isn't enough for Rick, who is normally very active. We haven't seen the PT yet, and the nutritional people are on hold again until they figure out what is happening with the pyloris. The nursing team has been highly skilled and generally excellent. It is frustrating because they assign nursing staff using some formula that defies understanding. We have only had 3 repeat nurses in all this time. Rick checked into the hospital on April 14 and it is April 29 today. You do the math.
We just had an awesome treat. Rick was walking around the loop with his sister and I was on the phone. I looked up to see Cindy Alva and her two daughters come through the door (transported magically from Safford, Arizona)! They are here for her daughter's senior trip and even though they only have 2 days in Boston, they took time to come to see us. They only had a few minutes to visit, but it was such great gift for us. Rick's mood lifted immediately and I am just so whelmed to think that they took the time to look for us at the apartment and then the hospital. We are so lucky to have such wonderful and supportive friends. It will carry us through. Thank you everyone.
Sue
Yesterday Rick's team ordered a radiology series with contrast. He had a CT with contrast a day or two ago and the contrast solution made it all the way through his system - but very slowly. This new study showed that his pyloris was not working at all and that it was shut. Small amounts of fluid trickled through - which explains why he was able to be ok with drinking 30 cc's of boost an hour, but when he moved up to 30 cc's every half hour, his stomach blew up and they had to reinsert the stomach drain.
Last night he had a procedure under general anesthesia where they put a camera into his stomach. They inserted a feeding tube and a balloon. (I have a hard time visualizing how this works.) They slowly ease the tube through the pyloris and slowly inflate the balloon. (The balloon is sausage shaped.) They leave it inflated for 15 minutes and then deflate it and pull it out. The feeding tube stays in the intestines (through the pyloris). They also inserted a scope into his right lung to have a look. Sugarbaker said the lung is healing extremely well.
Rick's sister Suzi and brother David sat with me through the long wait for the surgeons to come out. Sugarbaker said all was a success and he also called Tricia on his cell phone to explain what they did and the result. He said that there is a potential that the feeding tube might slide back into the stomach, but for now it was placed where they wanted it. Rick had a single tube feed this a.m. and a bit later, he felt the feeding tube curl in the back of his throat. DaSilva tried to undo the curl - and either the curl was caused by the tube slipping backwards through the pyloris or it slipped when he tried to untangle the curl in Rick's throat. The end result is that the feeding tube is in the stomach again and they can't use it for feeding.
Rick is keeping a good attitude and waiting for what comes next. They will probably need to pull the feeding tube out again and go through the insertion procedure again. It is a painful, nasty process and we are all discouraged to think he might have to go through that again. The unanswered question is whether the pyloris has stayed open. (There is no magical camera to look through without another procedure under anesthetic.)
Sugarbaker is out of town and DaSilva is making the calls. I asked to have the GI team involved too. We are waiting to see what happens next.
Just FYI, we have quite a team here. We have Dr. Sugarbaker's team of an associate, a fellow, and many residents. We also have a GI team who visit Rick almost daily and are consulted for most decisions (although the surgeons have the final say). Also, the thoracic floor has their own team of attending physicans who oversee Rick's care day-to-day, and they are very involved. The nutritional consult is because he hasn't eaten in so long, and the physical therapy consult is to make sure he is moving his body through a full range of motion and doing exercises that he can do in bed. He walks 4 or 5 times a day, but that isn't enough for Rick, who is normally very active. We haven't seen the PT yet, and the nutritional people are on hold again until they figure out what is happening with the pyloris. The nursing team has been highly skilled and generally excellent. It is frustrating because they assign nursing staff using some formula that defies understanding. We have only had 3 repeat nurses in all this time. Rick checked into the hospital on April 14 and it is April 29 today. You do the math.
We just had an awesome treat. Rick was walking around the loop with his sister and I was on the phone. I looked up to see Cindy Alva and her two daughters come through the door (transported magically from Safford, Arizona)! They are here for her daughter's senior trip and even though they only have 2 days in Boston, they took time to come to see us. They only had a few minutes to visit, but it was such great gift for us. Rick's mood lifted immediately and I am just so whelmed to think that they took the time to look for us at the apartment and then the hospital. We are so lucky to have such wonderful and supportive friends. It will carry us through. Thank you everyone.
Sue
Wednesday, April 28, 2010
Hi -
Last night was a big step backwards. Rick's intestines developed an ileus again so he is back on the nasal stomach drain and nothing by mouth. Saying he is discouraged doesn't begin to describe how he is feeling. Except for this, he would be home at the apartment we have rented. They are calling for a nutrition consult and I have asked for a physical therapist to develop a movement plan. Right now he is reminding us that he is very hungry, but I don't think he will be allowed to have anything to eat today. 15 days without any substantial amount of food and although he needs to walk, he tells us he feels too weak to walk. Who could blame him! His nurse, Judy, is a very attractive woman and a competent nurse, so he will do things for Judy that he won't do for his sister or for me. (Men!)
His lung and heart continue to heal extremely well - and we shouldn't overlook that. Suzi takes the train back to New Jersey tomorrow and Holly and Bucky arrive tomorrow night. Holly will be talking to Rick about a therapy plan and he trusts everything she says, so that will be good. The doctors say that the intestines will eventually figure it out and not to worry - but it has been a very long and difficult process - especially frustrating because the actual lung surgery went so extremely well.
All for now. Pray for the ileus to resolve and for his digestive system to get back into normal action. Our apartment is about a 12 minute brisk walk from the hospital, and while I am enjoying the walks in the chilly air - I can't wait to have Rick at the apartment and to no longer make these daily journeys to the 11th floor of Brigham and Women's.
Sue
Last night was a big step backwards. Rick's intestines developed an ileus again so he is back on the nasal stomach drain and nothing by mouth. Saying he is discouraged doesn't begin to describe how he is feeling. Except for this, he would be home at the apartment we have rented. They are calling for a nutrition consult and I have asked for a physical therapist to develop a movement plan. Right now he is reminding us that he is very hungry, but I don't think he will be allowed to have anything to eat today. 15 days without any substantial amount of food and although he needs to walk, he tells us he feels too weak to walk. Who could blame him! His nurse, Judy, is a very attractive woman and a competent nurse, so he will do things for Judy that he won't do for his sister or for me. (Men!)
His lung and heart continue to heal extremely well - and we shouldn't overlook that. Suzi takes the train back to New Jersey tomorrow and Holly and Bucky arrive tomorrow night. Holly will be talking to Rick about a therapy plan and he trusts everything she says, so that will be good. The doctors say that the intestines will eventually figure it out and not to worry - but it has been a very long and difficult process - especially frustrating because the actual lung surgery went so extremely well.
All for now. Pray for the ileus to resolve and for his digestive system to get back into normal action. Our apartment is about a 12 minute brisk walk from the hospital, and while I am enjoying the walks in the chilly air - I can't wait to have Rick at the apartment and to no longer make these daily journeys to the 11th floor of Brigham and Women's.
Sue
Tuesday, April 27, 2010
Grilled Cheese and Watermelon
Hi Everyone -
After a day of tests and procedures, Rick's digestive system seemed to straighten out. He drank boost this a.m. and it worked out ok, so they told him he could have regular food. He asked for watermelon and grilled cheese, but after a few bits, he didn't feel so well. It just took time for the food to process. In the afternoon, he asked for more watermelon and grilled cheese. Two bites later, plus a sip of gatoraide and he was in distress again. Really, it's been a great day because he is able to eat, walk, and breathe well. He doesn't feel great, but still it's been a good day.
After a day of tests and procedures, Rick's digestive system seemed to straighten out. He drank boost this a.m. and it worked out ok, so they told him he could have regular food. He asked for watermelon and grilled cheese, but after a few bits, he didn't feel so well. It just took time for the food to process. In the afternoon, he asked for more watermelon and grilled cheese. Two bites later, plus a sip of gatoraide and he was in distress again. Really, it's been a great day because he is able to eat, walk, and breathe well. He doesn't feel great, but still it's been a good day.
Monday, April 26, 2010
13 days and still waiting
It has been 13 days since Rick has had more than a few sips of juice or broth to eat. He is still waiting for his system to turn on so that he can eat something. Yesterday he drank some red fluid which they traced as it moved through his system. The CT (with contrast) didn't find any blockage. He had a colonoscopy this afternoon and they didn't find any blockage - although they thought there might have been a crimp in his intestine. Hopefully, the colonoscopy straightened it out. Now they are putting golytely (what you take to cleanse your system; rushes through quickly) into his nasal tube and then we will all wait for it to make it's exit.
Amazingly, Rick's outlook is better this afternoon. They had given him Attavan (however you spell it) last night and this a.m. - partly to prevent nausea and I think partly to rule out that anxiety was a factor in the GI breakdown. It has worn off now and he is back to his alert (and hungry) self.
Tricia went home today and Rick's sister Suzi arrived by train. I had to shed a few tears while saying good-bye to TJ, but Suzi and I will have fun. These are difficult times, and we are lucky to have such supportive friends and family.
Sue
Amazingly, Rick's outlook is better this afternoon. They had given him Attavan (however you spell it) last night and this a.m. - partly to prevent nausea and I think partly to rule out that anxiety was a factor in the GI breakdown. It has worn off now and he is back to his alert (and hungry) self.
Tricia went home today and Rick's sister Suzi arrived by train. I had to shed a few tears while saying good-bye to TJ, but Suzi and I will have fun. These are difficult times, and we are lucky to have such supportive friends and family.
Sue
Sunday, April 25, 2010
Slowly, slowly his bowel will start to move
Today dad had a CT scan of his abdomen with contrast which showed that the contrast had moved across his transverse colon. This means that it moved through the stomach and small bowel, but his sigmoid colon is the longest these surgeons have ever seen and they expect it to take awhile before it moves completely through. There is no visible obstruction which is good, his system is just moving very slowly. This explains why he typically can tolerate liquids all morning and then in the afternoon as things start to get backed up he gets sick.
He is currently sitting in bed, chewing gum, awaiting his next scan. He is not allowed to drink anything, but did convince them to let him have one hard candy an hour and swabs for his mouth. He will get another CT scan tonight to make sure the contrast has continued to move. The good news is that there is no obstruction, but that doesn't help speed things up. For now it is just waiting for the stomach/intestine to recover and that takes a long time for someone who has the longest intestine in the world.
He is currently sitting in bed, chewing gum, awaiting his next scan. He is not allowed to drink anything, but did convince them to let him have one hard candy an hour and swabs for his mouth. He will get another CT scan tonight to make sure the contrast has continued to move. The good news is that there is no obstruction, but that doesn't help speed things up. For now it is just waiting for the stomach/intestine to recover and that takes a long time for someone who has the longest intestine in the world.
A step backwards
Hi All -
Rick's stomach is working - but his intestines are still not wanting to function well, so he has the stomach suction inserted again and he can't have anything by mouth. They are doing a complete GI workup today to try to discover where the breakdown in his system is.
Luckily, his lung is healing extremely well and his heart is coping well too. Rick has always had to be careful with his GI system - lots of healthy food, water, and daily exercise. Since he can have none of those things right now, his system seems to be rebelling. It's frustrating and unpleasant for him, but the doctors have no doubt that it will resolve itself. More time till he gets to have any nourishment though and he is always trying to negotiate for a sip of water or juice. Sorry Dude!
Tricia goes home tomorrow. She has been such a fabulous support to Rick and to me. I will miss having her here so much but I am grateful that she could be here for 10 days. Once this ileus resolves, I am confident that he will bounce back and be released to move to the apartment quickly. Rick's sister Suzi is coming for a few days and the Holly and Bucky will be here soon. Dr. Sugarbaker said that as soon as Rick is able to process food normally, then it really won't be very long before we are released to return to Tucson. It can all happen fairly quickly once this gastric system issue is resolved...so focus your prayers and supportive thoughts and let's hope things work themselves out today.
Sue
Rick's stomach is working - but his intestines are still not wanting to function well, so he has the stomach suction inserted again and he can't have anything by mouth. They are doing a complete GI workup today to try to discover where the breakdown in his system is.
Luckily, his lung is healing extremely well and his heart is coping well too. Rick has always had to be careful with his GI system - lots of healthy food, water, and daily exercise. Since he can have none of those things right now, his system seems to be rebelling. It's frustrating and unpleasant for him, but the doctors have no doubt that it will resolve itself. More time till he gets to have any nourishment though and he is always trying to negotiate for a sip of water or juice. Sorry Dude!
Tricia goes home tomorrow. She has been such a fabulous support to Rick and to me. I will miss having her here so much but I am grateful that she could be here for 10 days. Once this ileus resolves, I am confident that he will bounce back and be released to move to the apartment quickly. Rick's sister Suzi is coming for a few days and the Holly and Bucky will be here soon. Dr. Sugarbaker said that as soon as Rick is able to process food normally, then it really won't be very long before we are released to return to Tucson. It can all happen fairly quickly once this gastric system issue is resolved...so focus your prayers and supportive thoughts and let's hope things work themselves out today.
Sue
Saturday, April 24, 2010
Clear liquids never tasted so good!
Hi all -
Some of you are having difficulty signing in because a message comes up saying your invitation to the blog has expired. I think that is because you are clicking onto the original invitation link. If you go directly to Rickkickscancer.blogspot.com and then sign in by clicking on the sign in place in the upper right corner - it should work well. (I know this is obvious to many of you - but it wasn't to me so I am explaining.)
Rick has been tolerating clear liquids for 24 hours (30 cc's - or about an ounce - every half hour that he is awake). Even when he leaves the hospital, he will be limited to 1 liter of fluid a day - and that counts anything that is liquid at room temperature. - Not much to drink.) That will last for the next 6 weeks or so and then we will start increasing fluid if he needs more, but he will need to weigh and record his weight daily to guard against fluid retention because it is so hard on the heart and lung.) They removed the feeding tube this a.m. without ever actually using it. It's the second one and each one was accompanied by at least 6 X-rays, because they never could get it through the pyloris - it kept looping around. (Perhaps more information than you needed to know.)
Rick is feeling so much more like his normal self and is starting to notice areas on his body that hurt - like his left arm. They probably have been hurting all along - but there was so much going on that he was focused on larger issues. They are reducing the pain med. fentanyl because they want his digestive system to gain strength and the pain med. inhibits that. They are switching to another that he can take orally now that he is allowed to swallow.
So, for today, his tasks are to keep taking short, but frequent walks. He is still hooked up to a bunch of drips (fluid in and lasix to take it out again) and he needs a walker for support - so the nurse walks along with him. The nursing staff here on the thoracic unit have been excellent and we are so grateful for their support. Next, he needs to demonstrate that all body functions are running (he needs to eat real food and to poop) - and then they will consider sending him home. Sunday is a possibility, but it will probably be Monday. Tricia flies home on Monday and it would be nice to have him spend her last night here in the apartment, but that probably won't happen. Rick's sister Suzi arrives on Monday, so we will continue to have wonderful support.
Thank you all for the many positive and supportive comments and phone calls. Rick's throat is still very sore and he is weak, so talking is hard - but by tomorrow he may be able to take some phone calls if they are short ones.
Sue
Some of you are having difficulty signing in because a message comes up saying your invitation to the blog has expired. I think that is because you are clicking onto the original invitation link. If you go directly to Rickkickscancer.blogspot.com and then sign in by clicking on the sign in place in the upper right corner - it should work well. (I know this is obvious to many of you - but it wasn't to me so I am explaining.)
Rick has been tolerating clear liquids for 24 hours (30 cc's - or about an ounce - every half hour that he is awake). Even when he leaves the hospital, he will be limited to 1 liter of fluid a day - and that counts anything that is liquid at room temperature. - Not much to drink.) That will last for the next 6 weeks or so and then we will start increasing fluid if he needs more, but he will need to weigh and record his weight daily to guard against fluid retention because it is so hard on the heart and lung.) They removed the feeding tube this a.m. without ever actually using it. It's the second one and each one was accompanied by at least 6 X-rays, because they never could get it through the pyloris - it kept looping around. (Perhaps more information than you needed to know.)
Rick is feeling so much more like his normal self and is starting to notice areas on his body that hurt - like his left arm. They probably have been hurting all along - but there was so much going on that he was focused on larger issues. They are reducing the pain med. fentanyl because they want his digestive system to gain strength and the pain med. inhibits that. They are switching to another that he can take orally now that he is allowed to swallow.
So, for today, his tasks are to keep taking short, but frequent walks. He is still hooked up to a bunch of drips (fluid in and lasix to take it out again) and he needs a walker for support - so the nurse walks along with him. The nursing staff here on the thoracic unit have been excellent and we are so grateful for their support. Next, he needs to demonstrate that all body functions are running (he needs to eat real food and to poop) - and then they will consider sending him home. Sunday is a possibility, but it will probably be Monday. Tricia flies home on Monday and it would be nice to have him spend her last night here in the apartment, but that probably won't happen. Rick's sister Suzi arrives on Monday, so we will continue to have wonderful support.
Thank you all for the many positive and supportive comments and phone calls. Rick's throat is still very sore and he is weak, so talking is hard - but by tomorrow he may be able to take some phone calls if they are short ones.
Sue
Friday, April 23, 2010
Path is back
Today we had a family meeting and got some questions answered including the results of the pathology report. For those medically inclined the report was T4N2, but the N2 is based on 2 subaortic nodes so per Sugarbaker he feels it is more of an N1. The lung was epithelial cells, the diaphragm and pericardium were mixed cells. For those not medically inclined this is good news. It means that there was a big tumor that had spread into the lung that is now removed and that some of the cancer cells spread to local lymph nodes, but not to any of the further away lymph nodes. This means that he will likely have many good years to come.
Sugarbaker also said that he might go home on Sunday or Monday (apartment home, not Tucson home), but we are doing our best not to focus on that because plans can change and we don't want to be disappointed if we are still sitting here next Thursday. In addition he said that dad would have follow up a week after discharge and if things are good then he could go home to Tucson and just come back for follow up at 6 weeks...we are really not counting on that because we just don't see it happening, but keep those thoughts in your prayers. Right now my dad needs to focus on walking through his front door and having Connor jump up on him with glee while Rosie jumps on the couch awaiting her special pets.
Dads spirits are definitely boosted today. We are waiting for the results on his am abdominal xray to see if they can feed through the tube to stimulate the gut. He had cranberry juice which he tolerated well this morning. Next he gets prune juice.
Sugarbaker also said that he might go home on Sunday or Monday (apartment home, not Tucson home), but we are doing our best not to focus on that because plans can change and we don't want to be disappointed if we are still sitting here next Thursday. In addition he said that dad would have follow up a week after discharge and if things are good then he could go home to Tucson and just come back for follow up at 6 weeks...we are really not counting on that because we just don't see it happening, but keep those thoughts in your prayers. Right now my dad needs to focus on walking through his front door and having Connor jump up on him with glee while Rosie jumps on the couch awaiting her special pets.
Dads spirits are definitely boosted today. We are waiting for the results on his am abdominal xray to see if they can feed through the tube to stimulate the gut. He had cranberry juice which he tolerated well this morning. Next he gets prune juice.
Thursday, April 22, 2010
Keep on climbing
For those of you who are climbing the Sabino Canyon hill with us, the NG went back in last night after being pulled at lunch and causing a recurrent flair up of the ileus. Dad chose to put it back in to relieve his abdominal pain which was a wise choice and allowed him to get a good night sleep.
Today a wonderful intern replaced the dobhoff (the tube for feeding the intestine bypassing the stomach) with delicacy and care. We are hoping that it passes the pylorus (the part between the stomach and the intestine) so that they can start small feeds in hope of stimulating the gut. Dad has had more movement in his intestine, but still has a lot coming out of the NG so we aren't near feeding yet...we are still climbing that hill.
As for his spirit. His sense of humor is coming back full force and his drive to push himself is renewed which is nice for us to not have to be the bad guys. His lung is doing great and he responds well to the lopressor for his atrial fibrillation so we hope to wean off the other heart medication too.
Today, we are pushing for him to be able to take a shower, but have to wait for the big boss to make that decision. Next week all this should be behind us, but today is another day of slow steps up that awful hill.
Today a wonderful intern replaced the dobhoff (the tube for feeding the intestine bypassing the stomach) with delicacy and care. We are hoping that it passes the pylorus (the part between the stomach and the intestine) so that they can start small feeds in hope of stimulating the gut. Dad has had more movement in his intestine, but still has a lot coming out of the NG so we aren't near feeding yet...we are still climbing that hill.
As for his spirit. His sense of humor is coming back full force and his drive to push himself is renewed which is nice for us to not have to be the bad guys. His lung is doing great and he responds well to the lopressor for his atrial fibrillation so we hope to wean off the other heart medication too.
Today, we are pushing for him to be able to take a shower, but have to wait for the big boss to make that decision. Next week all this should be behind us, but today is another day of slow steps up that awful hill.
Wednesday, April 21, 2010
Slowly but surely
Dad walked 24 laps yesterday which is a full mile. He slept all night, exhausted from his walking. He still needs oxygen when he is asleep, but not when awake and not when walking.
This morning he got up, met his 15th nurse (Paul today) and once Paul found the walker went for a walk. Unfortunately during his third lap he suddenly felt very weak and when we returned to the room the monitor showed that he had gone back into atrial fibrillation. The team is going to wait and see if he will resolve the a. fib on his own like he did the other day. It makes him feel too weak to walk so no more walking for now, but maybe if he goes back to a normal heart rhythm he will be able to walk more later today.
On a happier note his stomach is starting up so today he is allowed to have chicken broth, small amounts, but I think it will make a big difference in his spirit. They said that the NG can come out, but we are opting to leave it in until he is really taking liquids without difficulty. It was so hard on him last time when the NG had to be put back in, we don't want him to go through that again.
If all goes well today, tomorrow the NG will be out and he will transition off his IV medications to PO which will allow him to walk without the IV pole which will make everything easier.
I feel like we are climbing that last hill out of Sabino Canyon and right now we are at the point where you can see the top of the hill, but there is still hill left to climb. In no time we will be strolling out of the canyon.
This morning he got up, met his 15th nurse (Paul today) and once Paul found the walker went for a walk. Unfortunately during his third lap he suddenly felt very weak and when we returned to the room the monitor showed that he had gone back into atrial fibrillation. The team is going to wait and see if he will resolve the a. fib on his own like he did the other day. It makes him feel too weak to walk so no more walking for now, but maybe if he goes back to a normal heart rhythm he will be able to walk more later today.
On a happier note his stomach is starting up so today he is allowed to have chicken broth, small amounts, but I think it will make a big difference in his spirit. They said that the NG can come out, but we are opting to leave it in until he is really taking liquids without difficulty. It was so hard on him last time when the NG had to be put back in, we don't want him to go through that again.
If all goes well today, tomorrow the NG will be out and he will transition off his IV medications to PO which will allow him to walk without the IV pole which will make everything easier.
I feel like we are climbing that last hill out of Sabino Canyon and right now we are at the point where you can see the top of the hill, but there is still hill left to climb. In no time we will be strolling out of the canyon.
Tuesday, April 20, 2010
Sunny In Boston? A good day
Hi all -
Tricia stayed with Rick last night to be sure things went smoothly and they did. The doctor prescribed a mild sleep aid so that he could get better night time sleep. Today, in addition to walking at least a mile (over 6 walks), his task has been to stay awake so that he can sleep well again tonight.
Rick's GI system has still not turned back on, so he still can't eat. One of Sugarbaker's fellow surgeons had a feeding tube inserted in Rick's via his nose and into his intestine yesterday (very nasty). The tube was in, but the head of the thoracic intensive care unit disagreed with the feeding tube saying that if there was no perstalsis in the intestine that inserting even a little bit of fluid will cause him the same amount of intense pain he experienced when they took the stomach drain out and his stomach accumulated too much fluid.
Anyway, today has been much, much better. He has walked five times and after 5 more laps, he will have walked a mile. He would love to have something to eat, but still waiting for his system to turn on. He is allowed one ounce of tea every hour and he treates it like 25 year old scotch!
My battery is about to run out, so I will post now. More later.
Sue
Tricia stayed with Rick last night to be sure things went smoothly and they did. The doctor prescribed a mild sleep aid so that he could get better night time sleep. Today, in addition to walking at least a mile (over 6 walks), his task has been to stay awake so that he can sleep well again tonight.
Rick's GI system has still not turned back on, so he still can't eat. One of Sugarbaker's fellow surgeons had a feeding tube inserted in Rick's via his nose and into his intestine yesterday (very nasty). The tube was in, but the head of the thoracic intensive care unit disagreed with the feeding tube saying that if there was no perstalsis in the intestine that inserting even a little bit of fluid will cause him the same amount of intense pain he experienced when they took the stomach drain out and his stomach accumulated too much fluid.
Anyway, today has been much, much better. He has walked five times and after 5 more laps, he will have walked a mile. He would love to have something to eat, but still waiting for his system to turn on. He is allowed one ounce of tea every hour and he treates it like 25 year old scotch!
My battery is about to run out, so I will post now. More later.
Sue
Monday, April 19, 2010
A small setback
This morning started with a 5am call and a rush to the hospital. Dad is fine, he was just having significant abdominal pain and wanted us here. His xray showed a lot of distention suggesting that things just aren't moving through yet. The NG tube got put back in and fluid poured out, guess he wasn't quite ready for those sips of juice. He is resting comfortably now and complaining again that he is hungry. Maybe tomorrow he will get to try sips atain, but nothing for now.
Sunday, April 18, 2010
Apple Juice
This afternoon Dad walked again, 4 laps this time (that is 1/6th of a mile) and stayed off oxygen all day. He was worn out by the time we left since he had started his day at 0400, but hopefully tonight he will get some sleep. His doctor let him have sips of apple juice this afternoon which he enjoyed every bit of. He has a cough that they are trying to get under control, but his lungs are clear and his humor is solidly intact. Tomorrow he will be downgraded out of the ICU to their stepdown unit and the rumor is that he will get to eat. Every time we see him he has more lines removed. I can't believe how well he is doing. We appreciate everyones support/prayers/blessings, I know it is helping.
Walking
Dads time schedule is all mixed up which means we missed his first walk because he did it at four thirty this morning. He walked two laps around the unit and though he felt up to a third he decided not tao push his luck. He also got his NG tube out and is taking sips of fluid. He is looking forward to eating in the next few days...though he thinks he should get to eat today. Slowly and steadily he will get back to normal.
Saturday, April 17, 2010
Working hard
Today Dad sat up twice dangling his legs with his bed in the chair position. The first time he was up over half an hour, the second time shorter and now he is worn out. His nurse says maybe later tonight he will sit once more. Tomorrow he will get to move around even more. He has spent most of the day without oxygen, only needing it during deep sleep. He is amazed by how hard it is simply to sit up. He has definitely been on better spirits today, even making occasional jokes. It will be a long road back to normal (months) but even the biggest adventure starts with the first step.
Tired
This morning dad is tired. He says people were in and out of his room all night. I have often pondered the fact that you need to rest to get well, yet hospitals are noisy places where we constantly wake you up. Hopefully today he will be able to sleep while mom and I stand guard at his bedside.
Friday, April 16, 2010
The worst is over!!! Golf is on the horizon!!
Hi Sue,
This is a post from a four year cancer victor! Looks like lots of good things have happpend and now the energy needs to be on recovery.
Tell Rick that all of us are pulling for him and we await the moment when you and he can get back here.
Fred
This is a post from a four year cancer victor! Looks like lots of good things have happpend and now the energy needs to be on recovery.
Tell Rick that all of us are pulling for him and we await the moment when you and he can get back here.
Fred
Starving...
Dad has had a great day. He is complaining that he is hungry so our nurse begged and got him ice chips (one every hour or so). He has spent much of this day off oxygen (pretty impressive for a guy who had his left lung removed yesterday). He really only needs oxygen when he falls into a deep sleep. Tomorrow he should get to hang his legs over the side of the bed and sit up. He is so strong, all those mornings at the gym are definitely paying off.
Even the best get confused
Great news this morning! It turns out that yesterday when Sugarbaker told us that he had to leave clips around the aorta to mark cells for radiation later he was confused about which family he was talking to. This morning he clarified. He took the diaphragm, but it was a clean resection (no clips left behind to mark cells). As he says they know that there are always some cells left, which is why they do the hot chemotherapy, but in dads case they removed all visible cells. We feel sad for the other family, but are elated about our good news.
The surgery went well yesterday. As we posted earlier, Sugarbaker had to take Rick's pleura, his lung, part of the pericardium, his 5th rib. The disappointing news was that there are a few cells left along the aorta. He said he could have resected the aorta and taken them, but he felt there were so few that he "clipped" them so they can be targeted with radiation later. They took out all the lymph nodes in the area and the analysis done during surgery was that they were all clear of mesothelioma. They will be analyzed more later.
Rick is doing as well as can be expected. He was awake and came into the intensive care with the breathing tube already removed, which is amazing for someone who just lost a lung. He is on oxygen, of course, but is breathing very well and has been very aware of what is happening around him. You might think that his chest would be in extreme pain, but they have blocked that. The pain he talks about is because his arm had to be held in an awkward position during the entire surgery and the nurses said that is the pain all the people who have this surgery complain most about.
I just called the hospital and his nurse, Eugene, said that Rick was able to get some sleep and that he is feeling better. All of his vital signs are excellent. His potassium is a bit low and they are adding that, but otherwise he is recovering quickly. He wants to be allowed to have ice chips, but that will have to wait for awhile. All he can have is a wet swab in his mouth and when Tricia asked how long it will be until he can have water, the nurse just said, "it will be awhile." He will probably be in intensive care with a 1:1 nurse until Monday.
It is icy cold and raining today and I am sure the walk to the hospital will be one to remember for Tricia and me. Hearing that there are mesothelioma cells left behind was hard to hear, but as Tricia pointed out - Even when the doctor said he "got it all" - It doesn't mean there aren't a few cells left behind. We know these are there and they will be treated. Today is a new day and we move on.
That's all for now. Keep checking the blog,
Rick is doing as well as can be expected. He was awake and came into the intensive care with the breathing tube already removed, which is amazing for someone who just lost a lung. He is on oxygen, of course, but is breathing very well and has been very aware of what is happening around him. You might think that his chest would be in extreme pain, but they have blocked that. The pain he talks about is because his arm had to be held in an awkward position during the entire surgery and the nurses said that is the pain all the people who have this surgery complain most about.
I just called the hospital and his nurse, Eugene, said that Rick was able to get some sleep and that he is feeling better. All of his vital signs are excellent. His potassium is a bit low and they are adding that, but otherwise he is recovering quickly. He wants to be allowed to have ice chips, but that will have to wait for awhile. All he can have is a wet swab in his mouth and when Tricia asked how long it will be until he can have water, the nurse just said, "it will be awhile." He will probably be in intensive care with a 1:1 nurse until Monday.
It is icy cold and raining today and I am sure the walk to the hospital will be one to remember for Tricia and me. Hearing that there are mesothelioma cells left behind was hard to hear, but as Tricia pointed out - Even when the doctor said he "got it all" - It doesn't mean there aren't a few cells left behind. We know these are there and they will be treated. Today is a new day and we move on.
That's all for now. Keep checking the blog,
Thursday, April 15, 2010
Dads first words
Earlier today dad woke for the first time while we were at his bedside, his eyes stayed closed, he reached his arm up a little and said "Holy Sh*t." We laughed and it was very comforting because it is exactly what we would expect from him.
He has woken numerous times since then, talked to us for bits and then gives in, pushes his PCA (pain medication) and goes back to sleep. We realized we were keeping him awake because he didn't want to put his PCA when we were around. Therefore, we left to let him sleep and will see him in the morning.
He has woken numerous times since then, talked to us for bits and then gives in, pushes his PCA (pain medication) and goes back to sleep. We realized we were keeping him awake because he didn't want to put his PCA when we were around. Therefore, we left to let him sleep and will see him in the morning.
Out of surgery
The surgery went well. Sugarbaker took the lung, pericardium and the 5th rib...which I think they should wash and give to mom, but these east coast folks are more conservative than us west coasters. They were not able to get all the cells around the aorta. However, there were also not so many cells as to require an aortic resection. Therefore, they left clips around the area so they will know where to radiate later.
Dad was extubated postop and now has oxygen through a facemask. He is sleepy on a pain pump, but in all looks good considering the major surgery he had today.
Dad was extubated postop and now has oxygen through a facemask. He is sleepy on a pain pump, but in all looks good considering the major surgery he had today.
Surgery update
Just received a call from Dr Sugarbaker who said the tumor had invaded the lung so they would have had to take it anyway. He said the surgery went smoothly and they are currently bathing him in hot chemotherapy. He will go straight to the ICU postop and Sugarbaker will come talk to us then. Will update more later.
Wednesday, April 14, 2010
Hi Everyone-
Rick is scheduled to check into the hospital at 2:00 today, although we have been told to call the hospital before we come to be sure the bed is ready because often there are delays in getting the bed ready....Rick has been living on clear liquids since yesterday a.m. and he is doing amazingly well and is in positive spirits. We met with Sugarbaker yesterday (and the song, "We're off to see the wizard" keeps popping into my head). He reassured Rick that the meso is very localized and he can get it - but he has decided that he needs to take the whole left lung because Rick has mixed type cells - epithelial and sarcoid. He only has a very small number of sarcoid - but Sugarbaker said that those cells are so aggressive and hard to treat that he thinks the outcome is much better when the whole lung is removed. Also, he said that in the past when he tries to save a lung when there are sarcoid cells, the lung tends to have lacerations and ends up becoming infected, requiring a second surgery. Finally, he said that when those nasty sarcoid cells are present, he likes to add radiation to the follow-up treatment and that requires removing the lung. (We think that's what he said about the radiation, but there was so much to process)......All in all, Rick found that news hard to think about. He has been so sure that he would keep his lung based on what Sugarbaker said last time. He is such a resilient person though, that it took about an hour for him to move past it and remember that his goal is to be cancer free - and he will survive quite well without the lung. I would have been a sobbing mess, but he has such an amazing capacity to process, reframe news in a positive way, and then move on. They have done a test that measures how much of each lung you use for air and he only uses the left lung for about 30% of his air anyway and Sugarbaker said that he will feel like he has so much more oxygen almost immediately because the left lung has been sending him unoxygenated blood for some time - which mixes with the blood from the right lung - causing him to be short of breath all the time.
They have kept Rick very busy here with additional tests and there hasn't been a lot of time to wander around Boston, but we did take the green line rail/underground to the waterfront for a great walk and a glass of wine. We are off to the bookstore right now to stock up on junk reading for Rick. Tricia arrives tonight.
Tomorrow is the big day. Rick is first up for surgery at 7 a.m. It should be a 5 to 6 hour surgery and then he will be in intensive care for several days. Please send your best prayers and strongest positive thoughts for Sugarbaker and his team to have their best day ever and for Rick to get through the surgery well and heal quickly.
Sue
Rick is scheduled to check into the hospital at 2:00 today, although we have been told to call the hospital before we come to be sure the bed is ready because often there are delays in getting the bed ready....Rick has been living on clear liquids since yesterday a.m. and he is doing amazingly well and is in positive spirits. We met with Sugarbaker yesterday (and the song, "We're off to see the wizard" keeps popping into my head). He reassured Rick that the meso is very localized and he can get it - but he has decided that he needs to take the whole left lung because Rick has mixed type cells - epithelial and sarcoid. He only has a very small number of sarcoid - but Sugarbaker said that those cells are so aggressive and hard to treat that he thinks the outcome is much better when the whole lung is removed. Also, he said that in the past when he tries to save a lung when there are sarcoid cells, the lung tends to have lacerations and ends up becoming infected, requiring a second surgery. Finally, he said that when those nasty sarcoid cells are present, he likes to add radiation to the follow-up treatment and that requires removing the lung. (We think that's what he said about the radiation, but there was so much to process)......All in all, Rick found that news hard to think about. He has been so sure that he would keep his lung based on what Sugarbaker said last time. He is such a resilient person though, that it took about an hour for him to move past it and remember that his goal is to be cancer free - and he will survive quite well without the lung. I would have been a sobbing mess, but he has such an amazing capacity to process, reframe news in a positive way, and then move on. They have done a test that measures how much of each lung you use for air and he only uses the left lung for about 30% of his air anyway and Sugarbaker said that he will feel like he has so much more oxygen almost immediately because the left lung has been sending him unoxygenated blood for some time - which mixes with the blood from the right lung - causing him to be short of breath all the time.
They have kept Rick very busy here with additional tests and there hasn't been a lot of time to wander around Boston, but we did take the green line rail/underground to the waterfront for a great walk and a glass of wine. We are off to the bookstore right now to stock up on junk reading for Rick. Tricia arrives tonight.
Tomorrow is the big day. Rick is first up for surgery at 7 a.m. It should be a 5 to 6 hour surgery and then he will be in intensive care for several days. Please send your best prayers and strongest positive thoughts for Sugarbaker and his team to have their best day ever and for Rick to get through the surgery well and heal quickly.
Sue
Saturday, April 10, 2010
Boston tomorrow
Hi All -
We leave for Boston tomorrow. Rick has to have a repeat of one test on Monday and then go through the pre-op routine again. Tuesday he meets with Sugarbaker. One yucky part is that starting Tuesday morning he can only have clear liquids. He checks into the hospital on Wednesday afternoon, and the surgery is scheduled for Thursday. Keep those strong thoughts and prayers coming.
Someone asked what the surgery would consist of. At a minimum, they will remove the left pleura. He has some adhesions from the surgery he had in March, so they were unclear about how much of the lung they might or might not have to take. If, after they are operating, they feel they need to take the whole lung, then they will remove the left lung along with the left diaphragm and some of the pericardium. We are hoping that that doesn't happen, but if it does, then we will focus on being happy that they are able to get all the meso out! That surgery leaves a big opening, and from what I have read, they put in gore-tex to keep the intestines and heart from moving into the open space. Honestly though, these people at the International Mesothelioma Program (IMP) are doing things are so new, they aren't talked about in the "layman's" books I have been reading.
One thing they do is to take tissue from your personal biopsy and test it with several different "cocktails" of chemo to see which is most effective with the particular tumor you have. Also, after surgery they flood the cavity with hot chemo because they find warmed chemo is much more effective - and it is an opportunity to target the chemo at the exact place it needs to be. I imagine all this will be very hard on the patient, but they have good success.
So, all is good and we are moving toward Rick starting his recovery. We will keep you posted as the week progresses.
Sue
We leave for Boston tomorrow. Rick has to have a repeat of one test on Monday and then go through the pre-op routine again. Tuesday he meets with Sugarbaker. One yucky part is that starting Tuesday morning he can only have clear liquids. He checks into the hospital on Wednesday afternoon, and the surgery is scheduled for Thursday. Keep those strong thoughts and prayers coming.
Someone asked what the surgery would consist of. At a minimum, they will remove the left pleura. He has some adhesions from the surgery he had in March, so they were unclear about how much of the lung they might or might not have to take. If, after they are operating, they feel they need to take the whole lung, then they will remove the left lung along with the left diaphragm and some of the pericardium. We are hoping that that doesn't happen, but if it does, then we will focus on being happy that they are able to get all the meso out! That surgery leaves a big opening, and from what I have read, they put in gore-tex to keep the intestines and heart from moving into the open space. Honestly though, these people at the International Mesothelioma Program (IMP) are doing things are so new, they aren't talked about in the "layman's" books I have been reading.
One thing they do is to take tissue from your personal biopsy and test it with several different "cocktails" of chemo to see which is most effective with the particular tumor you have. Also, after surgery they flood the cavity with hot chemo because they find warmed chemo is much more effective - and it is an opportunity to target the chemo at the exact place it needs to be. I imagine all this will be very hard on the patient, but they have good success.
So, all is good and we are moving toward Rick starting his recovery. We will keep you posted as the week progresses.
Sue
Friday, April 2, 2010
Surgery scheduled
Hi all -
The surgery is scheduled for April 15. They ask that we return to Boston on April 11 and meet with Sugarbaker on April 13. It's scary but feels good to be moving forward after all the waiting. Tricia will fly in on April 14 and stay for about 10 days. Then Holly and Bucky are coming for a week - so we will have support through about May 6. Rick should be out of the hospital then. We are planning to rent an apartment through a plan facilitated by the hospital. It turns out that the apartment is about two blocks from Fenway Park and Rick is already talking about going to a game. As all of you know, he can be a fairly determined character, so it won't surprise me at all if we manage to go to a ballgame before we come back to Tucson! We don't know when we will be cleared to return home - but the surgeon in Tucson, Jonathan Daniel, has agreed to pick up post surgical care as soon as Sugarbaker releases Rick. We have tickets home on May 20, but that may change. We'll keep you posted as we learn more. Keep those powerful prayers coming - they are helping so much!
Sue
The surgery is scheduled for April 15. They ask that we return to Boston on April 11 and meet with Sugarbaker on April 13. It's scary but feels good to be moving forward after all the waiting. Tricia will fly in on April 14 and stay for about 10 days. Then Holly and Bucky are coming for a week - so we will have support through about May 6. Rick should be out of the hospital then. We are planning to rent an apartment through a plan facilitated by the hospital. It turns out that the apartment is about two blocks from Fenway Park and Rick is already talking about going to a game. As all of you know, he can be a fairly determined character, so it won't surprise me at all if we manage to go to a ballgame before we come back to Tucson! We don't know when we will be cleared to return home - but the surgeon in Tucson, Jonathan Daniel, has agreed to pick up post surgical care as soon as Sugarbaker releases Rick. We have tickets home on May 20, but that may change. We'll keep you posted as we learn more. Keep those powerful prayers coming - they are helping so much!
Sue
Tuesday, March 30, 2010
Results in - all good!
The results of the mediastinal biopsy came in today. (I'm not sure I said mediastinal right.) There was no evidence of mesothelioma - 100% clear! Don't mistake this for the meso in Rick's pleura....What it means is that he can go straight to surgery without having to have chemo to shrink tumors first. Now we need to wait for Sugarbaker's office to schedule the surgery so we can make our plans. We will call them tomorrow.
Monday, March 29, 2010
Monday evening - still waiting for results
I know many of you are anxious to know the results of the biopsy. Rick called again today and the results are still not available.....We'll try again tomorrow.
Sunday, March 28, 2010
Waiting for biopsy results
Just wanted to let everyone know that we STILL don't have the results of the biopsy. We are e-mailing with another family - a young woman who has meso and went through the biopsy procedure at the same time Rick did - and they don't have their results either....more waiting
Tuesday, March 23, 2010
Baseball
Hi all -
It's not all drama. Rick and Andy Sherman went to a Rockies vs. Padres baseball game this afternoon. I joined them a bit later. Rick lasted about 5 innings until the cold wind and threatening rain moved in. We just got back to the car as the rain started.
It's not all drama. Rick and Andy Sherman went to a Rockies vs. Padres baseball game this afternoon. I joined them a bit later. Rick lasted about 5 innings until the cold wind and threatening rain moved in. We just got back to the car as the rain started.
Sunday, March 21, 2010
Back from Boston
Hello Everyone -
In general, I don't visit blogs and have resisted starting this one. There are so many of you who care about Rick and have called and e-mailed to let us know you are thinking of us. We are truly honored and supported by your good wishes. We wanted an efficient way to let everyone know what is happening. However, Rick loves getting your phone calls and e-mails. He is energized by his visits with people - and so I encourage you to keep checking in with him from time to time. This blog is just a way for us to let you know what is going on.
We flew to Boston last Sunday. Rick's sister Suzi and her husband Timm met us at the airport and spent the week sitting in waiting rooms and clinics with us. Rick had additional tests on Monday, Tuesday, Wednesday, and Friday. (We are joking that Rick now glows in the dark.) We met with Dr. Sugarbaker and his team on Tuesday and they feel that Rick is an excellent candidate for a successful surgery. Dr. Sugarbaker said that he felt very confident that they could remove all the mesothelioma from Rick's pleura and there is a possibility that they can save his left lung.
Rick had a biopsy of some lymph nodes near the lung on Friday and they used a camera to examine his lungs at the same time. If there is meso in the lungs, it glitters. (The resident told Rick that although he wasn't supposed to say anything, the scope looked very good.) The results from the biopsy will be back by the end of this coming week. If they find no meso in the lymph nodes, then we will be scheduled for surgery (in Boston) in about two weeks. If there is lymph involvement, he will have a few rounds of chemotherapy and then we will return to Boston for the surgery. Until we have the results, we don't know what the time schedule will be. Pray for no lymph involvement.
In general, people are in the hospital from 7 to 14 days after surgery, although they have had people stay in hospital for up to 4 weeks. Then we will need to stay in Boston near the hospital for 4 to 6 weeks. The people there have been very helpful at giving us lists of where to stay.
Then we will be back in Tucson for chemotherapy. Often radiation is part of this process, but no one talked about radiation when we met with the team.
It was a very positive visit and we all left feeling extremely hopeful. We will let you know the results of the biopsy when we learn them. Again, thank you all for the support and good wishes.
Sue
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