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.
Thursday, May 27, 2010
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
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