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.
Friday, April 30, 2010
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
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