I wish I could come up with fancy titles for these entries. We are beyond the point of counting days from surgery (I gave that up last week). Sometimes titles come to me...other times they don't. Hence, some posts are simply titled with the day/date.
As I write today's summary, I'm sitting with Ed in his hospital room. He's watching the Red Sox again (which is a good sign since he loves to watch them) and I'm on my laptop...pretty much what an evening at home might be like. I would normally leave around now since Ed is settling in for the night (really, "normally"...how sad that this is now a "norm"). However, Dan is on his way so he can be home for the weekend. He's driving straight to the hospital so he can see Ed tonight. Now there's certainly a bright spot in our day!
Speaking of which... When I got here this morning, the PTs had gotten Ed up and he was sitting in the chair. The first thing I noticed was that the swelling in his legs had gone down considerably! Yeah!! Yes, there is still some pretty good swelling, but certainly much better. And Ed said he had taken several steps with the walker to get to the chair. It was slow, but he did it. So more progress there as well. Dr. Marvelli also said the wound looked good and is beginning to heal so the wound vac was removed. Our day certainly started out brightly.
However, brightness can only last so long. At lunch time, Rob (our PA) came in and stopped Ed from eating anything. There was still concern about the fluid that was continuing to accumulate in his abdomen and so they wanted to insert the PleurX drain. This could be done with local anesthesia but he couldn't eat anything.
If you recall, two days ago I said that they couldn't insert the drain if there was an infection and they confirmed the fluid was infected. That is still true--that is not ideal. However, Ed basically needs to be drained daily otherwise his wound will not be able to heal. With the regular draining and antibiotics the hope is that eventually the fluid that is drained will no longer be infected and once that happens and his wound is healed, the infected drain can then be removed.
Did you get all that? Yes, it is confusing. But it was consensus that we needed to get the fluid out and keep it out and this was the only option. Solve the predominant problem first. So at 4 PM we headed back down to Interventional Radiology in the basement at Cooley to see Dr. Gates. I was able to wait down there (where there is no cell service, but good wifi) while Ed went in for the procedure. They had told me it would be about 30 mins (10 mins of prep, 20 mins for the procedure) and 40 mins later they came out to tell me he was doing fine but they were still draining fluid. At about 5:15, they finally were done. Dr. Gates had guestimated before they started that they would probably drain about 2 liters of fluid (since they drained about 3 liters two days ago). Well the magic number? 6 liters of fluid!
And, Dr. Gates could not insert the drain horizontally where she wanted so after about an hour, she wanted Ed to stand up and walk some (yes, I know...he's not walking) so that the tube would move lower in his abdomen. After dinner, Ed was able to sit up--which was very difficult and he felt very light headed, but continued to push himself to at least stand (walking was definitely not going to happen). After laying him back down in bed, they then drained an additional 1+ liter of fluid.
Now if you'll recall, a liter of fluid is about 2.2 pounds--so that was about 15 lbs of fluid!
While all of this was going on, our case manager was working hard to now find a bed for Ed where the wound vac was no longer needed but they now needed to handle the PleurX. She was working with facilities in Amherst and Hadley (which are most convenient) as well as one in Northampton, Leeds, Greenfield, and West Brookfield. If the Amherst and Hadley ones don't work out, next choice would be Northampton or Leeds. What a job though--some don't have a bed for a male patient, some don't accept our insurance (hard to believe since it's good insurance), some don't support PleurX, etc., etc., etc. Originally they thought he might be ready today, but with the procedure for the PleurX, that certainly was no longer feasible. So it could be sometime over the weekend. We'll see. We're both excited about making this step in the right direction, but we're also nervous. The doctors, nurses, and specialists here at Cooley have been great and Ed has gotten tremendous medical care.
We'll see what tomorrow brings. We're hoping this drain helps keep him "dry" and that we can battle any infection that sticks to the drain. We also hope the swelling continues to go down so he can work on walking and moving around more.
So please keep the prayers coming and have a good weekend.
Friday, April 5, 2013
Thursday, April 4, 2013
Thursday, 4/4
As promised, I went over to be with Ed in the morning. Although today was less stressful (at least for me), it was busy. It's amazing to me how hard it is to keep track of time and I can look up and several hours have passed. Throughout the day I am making notes to keep track of things.
Our case manager, Chris, stopped by this morning. She is still looking for a bed in rehab for Ed. She's hoping to secure one at two of the in-service facilities in Hadley/Amherst.
Carol, one of the wound ostomy nurse, was in next and spent some time checking Ed's wounds and tending to those. She identified a couple pressure ulcers on his buttocks so tended to those and implemented a strict schedule for rotating Ed and keeping him on his side. She also identified a small leak on his right side which we could not figure out from what. But a small amount of liquid was leaking out. The leak seemed to be less later in the evening.
Ed did a good job eating his breakfast and then his lunch. After lunch, the physical therapists came to get him out of bed and into a chair. This took a little bit, but Ed did a good job of getting into a standing position and then getting into the chair with the help of a walker. They had him sit up straight, feet on the floor, for 30 mins and then he could recline for 30 mins. But no more than an hour in the chair (per Carol). As difficult as it was for Ed to move, it was very good for him to stand for a bit and use his legs and feet.
Ed did experience a great deal of pain when they put him back into bed. Looking back at my notes, I could see that his pain medication was wearing off at that time. Rolling him to the opposite side two hours later was thankfully less painful but still sapped a lot of energy.
Rob, our PA, came by to see us to report on Ed's condition. Said that the fluid from the abdomen was infected. No cultures had developed yet but they would wait another 24 hrs. In the meantime, antibiotics are being given. If there are other specific infections they will changeup the antibiotics accordingly. They are also continuing diuretics to help reduce the swelling (while not stressing the kidneys). As Rob said, it's a slow process because he's pushing the kidney to work hard, but doesn't want to push it too hard and cause damage. Once Ed is off all IVs and both the antiobiotics and diuretic can be administered with oral meds, he can be released to rehab. Rob thinks this might be in about 48 hrs! So now it's just a matter of our case manager finding a bed for him!
Ed then had some dinner which is good since it's so important for him to eat and get some protein into him. Another roll to the opposite side and when I left he was resting comfortably watching the Red Sox game.
We'll see what tomorrow brings but please keep sending the prayers.
Our case manager, Chris, stopped by this morning. She is still looking for a bed in rehab for Ed. She's hoping to secure one at two of the in-service facilities in Hadley/Amherst.
Carol, one of the wound ostomy nurse, was in next and spent some time checking Ed's wounds and tending to those. She identified a couple pressure ulcers on his buttocks so tended to those and implemented a strict schedule for rotating Ed and keeping him on his side. She also identified a small leak on his right side which we could not figure out from what. But a small amount of liquid was leaking out. The leak seemed to be less later in the evening.
Ed did a good job eating his breakfast and then his lunch. After lunch, the physical therapists came to get him out of bed and into a chair. This took a little bit, but Ed did a good job of getting into a standing position and then getting into the chair with the help of a walker. They had him sit up straight, feet on the floor, for 30 mins and then he could recline for 30 mins. But no more than an hour in the chair (per Carol). As difficult as it was for Ed to move, it was very good for him to stand for a bit and use his legs and feet.
Ed did experience a great deal of pain when they put him back into bed. Looking back at my notes, I could see that his pain medication was wearing off at that time. Rolling him to the opposite side two hours later was thankfully less painful but still sapped a lot of energy.
Rob, our PA, came by to see us to report on Ed's condition. Said that the fluid from the abdomen was infected. No cultures had developed yet but they would wait another 24 hrs. In the meantime, antibiotics are being given. If there are other specific infections they will changeup the antibiotics accordingly. They are also continuing diuretics to help reduce the swelling (while not stressing the kidneys). As Rob said, it's a slow process because he's pushing the kidney to work hard, but doesn't want to push it too hard and cause damage. Once Ed is off all IVs and both the antiobiotics and diuretic can be administered with oral meds, he can be released to rehab. Rob thinks this might be in about 48 hrs! So now it's just a matter of our case manager finding a bed for him!
Ed then had some dinner which is good since it's so important for him to eat and get some protein into him. Another roll to the opposite side and when I left he was resting comfortably watching the Red Sox game.
We'll see what tomorrow brings but please keep sending the prayers.
Wednesday, April 3, 2013
I Never Liked Roller Coasters...
Last week, I tried to define each day as either a "good" day or a "bad" day. That was going to be my gauge on this journey. But unfortunately, what I realized today was that I cannot define this at the "day" level. Instead, the day, like today, just "is"...and throughout today there were some "good" moments and then there were some "bad" moments. Some describe this as a roller coaster and I would agree, my day--hour-by-hour--is a roller coaster of good and bad. I try to be strong for Ed. I try to keep a clear head and take many notes and apply my logical thinking and problem solving skills to help us make informed decisions. But then I get smacked up side the head when I look at Ed laying in that hospital bed trying to battle all that is happening to his body. I will be strong for him and I will find comfort and support from the many friends and family who are there to help and there to pray. And I will ride this roller coaster as long as there is still some good mixed in with the bad, since I don't particularly care for the alternative.
So now that the emotional part of me is done writing today's intro, let's get down to facts about our day.
I attempted to go into the office today and, in fact, it was good to focus on work for a period of time. That was, of course, until I got to the hospital and they were sharing "bad" (there's that word again) news with Ed and really needed me there.
Okay, sure, the doctors wouldn't call it "bad" news. Rather, they are still concerned about the fluid in his abdomen which could be infected and is also preventing the wounds from healing. So they wanted to put in a drain. Dr. Gates came up and explained all about the drain (PleurX) to us--how it's inserted, how to drain it, etc. After an ultrasound and the fact that you can't put in a drain if there's an infection, we agreed to have them draw fluid for analysis and while they were at it, also drain about a liter of fluid to help provide some relief.
Of course, I won't get on my soapbox about who knows what would have been done if I didn't press them to move in one or the other direction. The fact was that Ed wasn't allowed to eat or drink anything after breakfast in case they did the procedure and now here we were at 3:30 PM and still no definitive answer.
So once we got things moving, they brought Ed down to Interventional Radiology where Dr. Gates and her staff ended up draining about 3 liters of fluid (which equalled about 6.8 lbs). The liquid was "thick and icky" so it likely infected, but we will know more after testing.
We were then back up to Ed's room around 5 PM. It was quite a busy and emotional day. Needing to determine if he would have another surgery to put the drain in, then needing to move him to/from his bed to a stretcher for the procedure. Then on top of that he hadn't eaten or drank anything since breakfast. So it was a very draining day.
Good news is that the swelling in his legs is going down very slightly, but it went down. Also, he didn't have any pain meds all days--went from 8 AM to 8 PM--which is quite amazing when he was getting them every 4 hours just yesterday.
Still concern about the liver and will watch the fluid accumulation in his abdomen. He's already on antibiotics so by draining the fluid we're hoping it will be more effective. Analysis of the fluid will also help to pinpoint appropriate antibiotics.
And the craziest thing is that on top of all this, we have a case manager coming in asking us which rehab facility we prefer and she's trying to secure a bed for Ed at one. Like I even have a clue when he'll be able to get out of the hospital. Whatever...I guess everyone has their job to do.
I will be back with Ed in the morning...too many curves in the roller coaster right now not to be together.
One day at a time...please keep up the continued prayers...
So now that the emotional part of me is done writing today's intro, let's get down to facts about our day.
I attempted to go into the office today and, in fact, it was good to focus on work for a period of time. That was, of course, until I got to the hospital and they were sharing "bad" (there's that word again) news with Ed and really needed me there.
Okay, sure, the doctors wouldn't call it "bad" news. Rather, they are still concerned about the fluid in his abdomen which could be infected and is also preventing the wounds from healing. So they wanted to put in a drain. Dr. Gates came up and explained all about the drain (PleurX) to us--how it's inserted, how to drain it, etc. After an ultrasound and the fact that you can't put in a drain if there's an infection, we agreed to have them draw fluid for analysis and while they were at it, also drain about a liter of fluid to help provide some relief.
Of course, I won't get on my soapbox about who knows what would have been done if I didn't press them to move in one or the other direction. The fact was that Ed wasn't allowed to eat or drink anything after breakfast in case they did the procedure and now here we were at 3:30 PM and still no definitive answer.
So once we got things moving, they brought Ed down to Interventional Radiology where Dr. Gates and her staff ended up draining about 3 liters of fluid (which equalled about 6.8 lbs). The liquid was "thick and icky" so it likely infected, but we will know more after testing.
We were then back up to Ed's room around 5 PM. It was quite a busy and emotional day. Needing to determine if he would have another surgery to put the drain in, then needing to move him to/from his bed to a stretcher for the procedure. Then on top of that he hadn't eaten or drank anything since breakfast. So it was a very draining day.
Good news is that the swelling in his legs is going down very slightly, but it went down. Also, he didn't have any pain meds all days--went from 8 AM to 8 PM--which is quite amazing when he was getting them every 4 hours just yesterday.
Still concern about the liver and will watch the fluid accumulation in his abdomen. He's already on antibiotics so by draining the fluid we're hoping it will be more effective. Analysis of the fluid will also help to pinpoint appropriate antibiotics.
And the craziest thing is that on top of all this, we have a case manager coming in asking us which rehab facility we prefer and she's trying to secure a bed for Ed at one. Like I even have a clue when he'll be able to get out of the hospital. Whatever...I guess everyone has their job to do.
I will be back with Ed in the morning...too many curves in the roller coaster right now not to be together.
One day at a time...please keep up the continued prayers...
Tuesday, April 2, 2013
One Week Ago Today
It was one week ago exactly as I write this that Ed and I were in the emergency room at Cooley waiting to be assessed. My how our lives have changed--both in good and bad ways. Good ways because Ed is still here when we weren't sure he would be after surgery. Bad ways....well, that's obvious.
Today was a long day at the hospital. It feels like every day is a roller coaster and my emotions are all over the place (as I can imagine Ed's are as well).
Ed asked me to try to work from the hospital today so I could be with him. That was only semi-successful. I did having a phone call "meeting" for about an hour while he slept, but that was about it and that was about all the sleeping Ed did as well.
Soon after I got there, his wound ostomy nurse, Michelle, arrived followed closely by Dr. Marvelli. Ed's wounds are not healing (partly because of the avastin he was on but partly because of the amount of fluid in his body). As a result, fluid is seeping out through the wound and also through his colostomy. So Michelle put a new bag on that had a draining tube (otherwise they were emptying the bag every 20-30 mins). She also put a "wound vacuum" on his wound. This is intended to draw any fluid that is seeping through into a tube/container versus trying to absorb it with a bandage. She also ordered an upgraded air bed for Ed.
Physical therapists arrived shortly thereafter but since Ed was pretty wiped out and the bed was (supposedly) arriving soon, we decided to try to coordinate Ed moving with getting into the new bed so the PTs left.
Swelling is still Ed's biggest issue. It appears to have gone down in his abdomen but his legs are still quite swollen and difficult to move.
Ed had part of a sandwich for lunch and he ate most of his dinner as well. He also had some Ensure (with ice cream...which makes it more palatable). These are all good in helping to increase his protein which will help heal the wounds.
His case manager stopped by and we talked briefly about rehab. Dr. Bowers also sent a case worker from Cancer Care to talk with Ed (and she also stopped by to talk to me later in the afternoon). And Dr. Bowers came by to meet with us as well. So all of this kept us busy.
There were some things that kinda frustrated me, but I'm learning to deal with them effectively. For example, we weren't getting much information in terms of his treatment. Dr. Marvelli simply said he needed to eat and get protein into him. But no one was explaining what tests they were doing or what the results were afterwards. So I did ask to have the Physician Assistant assigned to stop by and talk to us. And then I ran through my questions. For example, Ed had a chest x-ray while I was there (yes, another thing that happened today), so I asked her about why (to check for fluid in his lungs) and what the results were (that it has gone down--supposedly they saw some in the lower-right side a couple days ago when they did an x-ray). They also took a urine sample earlier in the day--so I asked about that. Just kinda crazy that I needed I seek this info out. I just "assumed" that someone would be around and provide a general update. Now I know!
Plus, because of the whole new bed, they had postponed giving him a bath and changing his bed linens. Well, because things were pretty busy on the ward, he didn't get his bath until about 6:30 PM. Not that this was so terrible but you can bet I wasn't going home tonite without this happening.
And, finally, around 9:15, they got him into his new bed. Both Ed and I were expressing our optimism and basically figured we'd get him settled into his current bed. But they got him into it, did all his vitals, gave all his meds, etc., and he was finally settled in for the night around 10:30. So it was a late nite for me since I wasn't going to leave til he was settled.
Now that I'm learning the ropes, they better watch out! Just like anything else, you really need to know how to advocate for yourself and just be sure to ask questions and be sure they respond to your needs and requests.
Ed is still not out of the woods. We really need to get the swelling down so he can start moving more which will help with the liver as well (which is having a hard time).
But Ed agrees, as bad as things seem right now, he certainly is in less pain than he was a week ago.
So onward we go... Please continue with the prayers.
Today was a long day at the hospital. It feels like every day is a roller coaster and my emotions are all over the place (as I can imagine Ed's are as well).
Ed asked me to try to work from the hospital today so I could be with him. That was only semi-successful. I did having a phone call "meeting" for about an hour while he slept, but that was about it and that was about all the sleeping Ed did as well.
Soon after I got there, his wound ostomy nurse, Michelle, arrived followed closely by Dr. Marvelli. Ed's wounds are not healing (partly because of the avastin he was on but partly because of the amount of fluid in his body). As a result, fluid is seeping out through the wound and also through his colostomy. So Michelle put a new bag on that had a draining tube (otherwise they were emptying the bag every 20-30 mins). She also put a "wound vacuum" on his wound. This is intended to draw any fluid that is seeping through into a tube/container versus trying to absorb it with a bandage. She also ordered an upgraded air bed for Ed.
Physical therapists arrived shortly thereafter but since Ed was pretty wiped out and the bed was (supposedly) arriving soon, we decided to try to coordinate Ed moving with getting into the new bed so the PTs left.
Swelling is still Ed's biggest issue. It appears to have gone down in his abdomen but his legs are still quite swollen and difficult to move.
Ed had part of a sandwich for lunch and he ate most of his dinner as well. He also had some Ensure (with ice cream...which makes it more palatable). These are all good in helping to increase his protein which will help heal the wounds.
His case manager stopped by and we talked briefly about rehab. Dr. Bowers also sent a case worker from Cancer Care to talk with Ed (and she also stopped by to talk to me later in the afternoon). And Dr. Bowers came by to meet with us as well. So all of this kept us busy.
There were some things that kinda frustrated me, but I'm learning to deal with them effectively. For example, we weren't getting much information in terms of his treatment. Dr. Marvelli simply said he needed to eat and get protein into him. But no one was explaining what tests they were doing or what the results were afterwards. So I did ask to have the Physician Assistant assigned to stop by and talk to us. And then I ran through my questions. For example, Ed had a chest x-ray while I was there (yes, another thing that happened today), so I asked her about why (to check for fluid in his lungs) and what the results were (that it has gone down--supposedly they saw some in the lower-right side a couple days ago when they did an x-ray). They also took a urine sample earlier in the day--so I asked about that. Just kinda crazy that I needed I seek this info out. I just "assumed" that someone would be around and provide a general update. Now I know!
Plus, because of the whole new bed, they had postponed giving him a bath and changing his bed linens. Well, because things were pretty busy on the ward, he didn't get his bath until about 6:30 PM. Not that this was so terrible but you can bet I wasn't going home tonite without this happening.
And, finally, around 9:15, they got him into his new bed. Both Ed and I were expressing our optimism and basically figured we'd get him settled into his current bed. But they got him into it, did all his vitals, gave all his meds, etc., and he was finally settled in for the night around 10:30. So it was a late nite for me since I wasn't going to leave til he was settled.
Now that I'm learning the ropes, they better watch out! Just like anything else, you really need to know how to advocate for yourself and just be sure to ask questions and be sure they respond to your needs and requests.
Ed is still not out of the woods. We really need to get the swelling down so he can start moving more which will help with the liver as well (which is having a hard time).
But Ed agrees, as bad as things seem right now, he certainly is in less pain than he was a week ago.
So onward we go... Please continue with the prayers.
Monday, April 1, 2013
Monday, April 1st
First let me wish our niece Lexi a very Happy 12th Birthday!!
Today I put a few hours into work and then headed to the hospital. Ed said Dr. Marvelli stopped by to check his incision (said it looked good). The nutritionist also stopped by and ordered some lunch and dinner for Ed. For lunch he had an egg and some toast. Dinner was half a pb&j and some milk. So good news is that he ate something--just a bit but better than nothing! And we picked out his meal choices for tomorrow. Bad news is that he had stomach cramping after dinner which caused him some pain.
While I was there his physical therapist came by and helped him move from the bed to the chair. Wasn't in the chair for more than an hour when his wound ostomy nurse stopped by. She talked to Ed about the colostomy and then replaced his bag. She was very caring and really took the time to explain things. A case manager also came by to introduce herself. She will help us with insurance and decisions for future support.
It was a busy day and Ed didn't get any rest. He still has significant swelling in his lower body and this makes moving very difficult. He is off all regular IVs--just one when they give him antibiotics and for pain they just give him a oxycodone every 4 hours. They still have him on a diuretic until they can get the swelling down. Hoping that once that happens, he can move around a bit more. He's also lost his voice which is odd and also makes it difficult for him to communicate.
So overall a good day although still a ways to go. More tomorrow...
Today I put a few hours into work and then headed to the hospital. Ed said Dr. Marvelli stopped by to check his incision (said it looked good). The nutritionist also stopped by and ordered some lunch and dinner for Ed. For lunch he had an egg and some toast. Dinner was half a pb&j and some milk. So good news is that he ate something--just a bit but better than nothing! And we picked out his meal choices for tomorrow. Bad news is that he had stomach cramping after dinner which caused him some pain.
While I was there his physical therapist came by and helped him move from the bed to the chair. Wasn't in the chair for more than an hour when his wound ostomy nurse stopped by. She talked to Ed about the colostomy and then replaced his bag. She was very caring and really took the time to explain things. A case manager also came by to introduce herself. She will help us with insurance and decisions for future support.
It was a busy day and Ed didn't get any rest. He still has significant swelling in his lower body and this makes moving very difficult. He is off all regular IVs--just one when they give him antibiotics and for pain they just give him a oxycodone every 4 hours. They still have him on a diuretic until they can get the swelling down. Hoping that once that happens, he can move around a bit more. He's also lost his voice which is odd and also makes it difficult for him to communicate.
So overall a good day although still a ways to go. More tomorrow...
Sunday, March 31, 2013
Easter Sunday
Well there was no celebrating of Easter today for us.
Dan and I got to the hospital around 9-9:30 AM. They had given Ed a "bath" and he had spent some time sleeping on his side the night before. They also changed his bandage and emptied his bag. Ed was also off the PCA pump (self administered pain meds). They continue to administer pain meds as needed especially since Ed had some severe pain when his stomach would cramp (although it would only last a couple seconds).
Dr. Marvelli stopped by to check on him and confirmed that his abdomen was full of a lot of fluid when he operated. Dr. Bowers also stopped by and let me know that we have a long road in front of us. Ed really likes him and Dr. Bowers also knows Ed well and did his best to encourage Ed.
They gave Ed some diuretic to help with the swelling which definitely produced more urine. His stomach/bowels were grumbling which was good since these tend to "go to sleep" after surgery.
Around 1 PM, Dan and I left so that Dan could head back to Waltham. When I returned to the hospital at 3:30 PM, Ed was sitting in the chair, had been shaved, and had an Ensure (which he didn't drink much of).
His physician's assistant, Rob Levine, stopped by and provided some good information and also see how Ed was doing. Ed has a sore in his mouth which he diagnosed as Thrush--so treatment for that next. They also drew blood to check his levels. If it looks good, they'll remove his temporary port tomorrow (the one inserted during surgery).
Ed even had a bit of his liquid dinner--some sips of the soup, raspberry ice, and grape juice. This was great since he hasn't felt like anything so far.
He also stayed in the chair until the shift change at 7 PM and then actually shuffled from the chair to the bed, using a walker. Previously he was only able to pivot and not really "walk" much. This was great progress.
His nurse for the day was Chris who we liked. And his night nurse Oksana was great in getting him back in bed, making sure he was comfortable, and being really clear with Ed (regarding pain, breathing exercises, etc.). A nice surprise was that Christina stopped by on her way out (she was working on another floor) to wish Ed a Happy Easter.
So Ed slept a good portion of the day but was awake for a portion as well. Eating a bit and using the walker to move between the chair and bed were all great accomplishments. They continue to keep an eye on his heart rate (which continues to be high) and are working to get the swelling down.
Tomorrow I am going to try to go to work for a bit. Ed would like me to go to work in the morning and then go see him in the afternoon. We'll see how that goes. I'll continue to keep you posted.
Dan and I got to the hospital around 9-9:30 AM. They had given Ed a "bath" and he had spent some time sleeping on his side the night before. They also changed his bandage and emptied his bag. Ed was also off the PCA pump (self administered pain meds). They continue to administer pain meds as needed especially since Ed had some severe pain when his stomach would cramp (although it would only last a couple seconds).
Dr. Marvelli stopped by to check on him and confirmed that his abdomen was full of a lot of fluid when he operated. Dr. Bowers also stopped by and let me know that we have a long road in front of us. Ed really likes him and Dr. Bowers also knows Ed well and did his best to encourage Ed.
They gave Ed some diuretic to help with the swelling which definitely produced more urine. His stomach/bowels were grumbling which was good since these tend to "go to sleep" after surgery.
Around 1 PM, Dan and I left so that Dan could head back to Waltham. When I returned to the hospital at 3:30 PM, Ed was sitting in the chair, had been shaved, and had an Ensure (which he didn't drink much of).
His physician's assistant, Rob Levine, stopped by and provided some good information and also see how Ed was doing. Ed has a sore in his mouth which he diagnosed as Thrush--so treatment for that next. They also drew blood to check his levels. If it looks good, they'll remove his temporary port tomorrow (the one inserted during surgery).
Ed even had a bit of his liquid dinner--some sips of the soup, raspberry ice, and grape juice. This was great since he hasn't felt like anything so far.
He also stayed in the chair until the shift change at 7 PM and then actually shuffled from the chair to the bed, using a walker. Previously he was only able to pivot and not really "walk" much. This was great progress.
His nurse for the day was Chris who we liked. And his night nurse Oksana was great in getting him back in bed, making sure he was comfortable, and being really clear with Ed (regarding pain, breathing exercises, etc.). A nice surprise was that Christina stopped by on her way out (she was working on another floor) to wish Ed a Happy Easter.
So Ed slept a good portion of the day but was awake for a portion as well. Eating a bit and using the walker to move between the chair and bed were all great accomplishments. They continue to keep an eye on his heart rate (which continues to be high) and are working to get the swelling down.
Tomorrow I am going to try to go to work for a bit. Ed would like me to go to work in the morning and then go see him in the afternoon. We'll see how that goes. I'll continue to keep you posted.
Saturday, March 30, 2013
Saturday: Day 3 Post Surgery
Today Ed was quite tired and slept most of the day. They did get him into a chair again but I think he stayed in that too long since the swelling in his legs seemed to get worse and it was difficult for him to get back into bed.
Ed's nurse today (a new gentleman) was less attentive and I think this bothered Ed at some level.
I didn't see any doctor's today (although Ed did) so no results from his leg scan yesterday. Ed did say they came in this morning to take a chest x-ray.
The good news is that in the afternoon, they moved Ed to the less critical section of the floor (Room #15). This means a quieter room and no constant monitoring of vitals. I think the change in room, getting a new nurse, and getting back into bed helped even though he continued to sleep all afternoon.
We did limit his visitors today since he was certainly not up to visiting. Dan and I ended up leaving a little earlier usual. I'm hoping tomorrow will be a better day.
Thank you for your continued prayers.
Ed's nurse today (a new gentleman) was less attentive and I think this bothered Ed at some level.
I didn't see any doctor's today (although Ed did) so no results from his leg scan yesterday. Ed did say they came in this morning to take a chest x-ray.
The good news is that in the afternoon, they moved Ed to the less critical section of the floor (Room #15). This means a quieter room and no constant monitoring of vitals. I think the change in room, getting a new nurse, and getting back into bed helped even though he continued to sleep all afternoon.
We did limit his visitors today since he was certainly not up to visiting. Dan and I ended up leaving a little earlier usual. I'm hoping tomorrow will be a better day.
Thank you for your continued prayers.
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| The Easter Bunny that Dr. Bowers brought Ed. It made him smile. |
Friday, March 29, 2013
Friday: Day 2 Post Surgery
Great surprise today--Nurse Christina was back!! They were short-handed and called her in on her day off. Yippee!! Not that we didn't like Pat, but anyone pales in comparison to Christina! So that was a nice start to the day.
Ed had a good night of sleep the night before so that was good as well. The swelling had not gone down. It was most noticable in his legs but you could also see it in his torso, abdomen, arms, and hands (okay pretty much everywhere).
They got him out of the bed again and he sat in a chair for a bit.
A nutrional specialist/dietician came in and shared with us information about what kind of diet Ed would need to follow once he begins to eat. This was then followed by a visit from an Occupational Therapist and a Physical Therapist who got Ed to standup, move his feet a bit, while they monitored his heart rate. His heart rate was still elevated but did go up too much when he was doing this which was a good sign.
Dr. Marvelli came by and removed the dressing on his incision. It looked pretty good...and had a lot of staples. For those who want details, the incision runs vertically up his lower abdomen past his belly button (maybe out 10"?). Ed let me take a picture, but I'm not posting it here (at least not yet).
Dr. Bowers came by again to visit with Ed (we really like Dr. B) and Fr. Vern stopped by mid-morning as well.
Ed's incision began to "weep"...probably from moving around and the swelling. Nothing terrible, but definitely took several guaze pads to keep it from soaking his johnnie.
They also ordered a sonogram of Ed's legs to check for clotting. No word on that before we left for the day.
Ed's heart rate was still elevated throughout the day and he was much more tired today. They tried to take him off the oxygen for a bit but then put him back on it. They also talked about removing his catheter, but that didn't happen either today.
Still no temperature or sign of infection which is good. Hopefully tomorrow he will feel a little better.
We'll see and I'll continue to keep you posted.
Ed had a good night of sleep the night before so that was good as well. The swelling had not gone down. It was most noticable in his legs but you could also see it in his torso, abdomen, arms, and hands (okay pretty much everywhere).
They got him out of the bed again and he sat in a chair for a bit.
A nutrional specialist/dietician came in and shared with us information about what kind of diet Ed would need to follow once he begins to eat. This was then followed by a visit from an Occupational Therapist and a Physical Therapist who got Ed to standup, move his feet a bit, while they monitored his heart rate. His heart rate was still elevated but did go up too much when he was doing this which was a good sign.
Dr. Marvelli came by and removed the dressing on his incision. It looked pretty good...and had a lot of staples. For those who want details, the incision runs vertically up his lower abdomen past his belly button (maybe out 10"?). Ed let me take a picture, but I'm not posting it here (at least not yet).
Dr. Bowers came by again to visit with Ed (we really like Dr. B) and Fr. Vern stopped by mid-morning as well.
Ed's incision began to "weep"...probably from moving around and the swelling. Nothing terrible, but definitely took several guaze pads to keep it from soaking his johnnie.
They also ordered a sonogram of Ed's legs to check for clotting. No word on that before we left for the day.
Ed's heart rate was still elevated throughout the day and he was much more tired today. They tried to take him off the oxygen for a bit but then put him back on it. They also talked about removing his catheter, but that didn't happen either today.
Still no temperature or sign of infection which is good. Hopefully tomorrow he will feel a little better.
We'll see and I'll continue to keep you posted.
Thursday, March 28, 2013
Thursday: Day 1 Post Surgery
Today was a busy day. Ed had a new nurse--Pat. She was older but very nice and attentive. Ed got a sponge bath and Pat was really nice giving him a back rub. They also got him to sit up and move to sit in a chair. Now anyone who has had major surgery can tell you, this was a major feat! He stayed in the chair for about an hour. Concerns for today included the fact that his heart rate was still high (blood pressure was good though) and that he was producing little urine. They gave him about 1 liter per hour for about 6 hours to try to increase his fluid. Temperature was still good though and no signs of infection.
A wound ostomy nurse also came by to talk with us and gave us some brochures/information to read about his colostomy.
They also had a sonogram taken of Ed's heart. The woman who did it was very good about explaining to us what she was doing and what we were seeing on the sonogram. Very interesting.
In addition to seeing Dr. Levrault; Dr. Marvelli and Dr. Lawlor both stopped by. I am quite impressed that Ed's surgeon and anethesologist both stop in to check on him and see how he is doing. Such GREAT doctors!
Ed didn't sleep much at all during the day and he didn't sleep well Wednesday night either so he was getting quite tired by the evening. When Dan and I went to leave around 9 PM, we discovered that his legs had become quite swollen. His evening nurse, Cathy, said this was normal. We'll see what tomorrow brings.
A wound ostomy nurse also came by to talk with us and gave us some brochures/information to read about his colostomy.
They also had a sonogram taken of Ed's heart. The woman who did it was very good about explaining to us what she was doing and what we were seeing on the sonogram. Very interesting.
In addition to seeing Dr. Levrault; Dr. Marvelli and Dr. Lawlor both stopped by. I am quite impressed that Ed's surgeon and anethesologist both stop in to check on him and see how he is doing. Such GREAT doctors!
Ed didn't sleep much at all during the day and he didn't sleep well Wednesday night either so he was getting quite tired by the evening. When Dan and I went to leave around 9 PM, we discovered that his legs had become quite swollen. His evening nurse, Cathy, said this was normal. We'll see what tomorrow brings.
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| Cards and pictures from Lexi. |
Wednesday, March 27, 2013
Emergency Surgery
What a few days it has been! Ed had emergency surgery Tuesday nite/Wed morning. Below is a recap of the past few days. I'll try to provide daily updates moving forward.
Tuesday, 3/26
Ed was home again today. He continued to be fatigued and trying to find the right combination to regulate his bowel movements and deal with the diarrhea he was experiencing. I got home late from work after stopping at the grocery store to pickup some high fiber foods for Ed. I had leftovers and he had some soup and crackers. Around 9 PM we finally sat down in front of the TV. Ed used the bathroom and then came out and sat on the couch in tremendous pain. The pain was in the middle of his abdomen and it was so intense it was causing tears. I called 911 and the EMTs checked him out, got him into the ambulance, gave him some pain killers and we were on our way to Cooley Dickinson Hospital.
They put him on an IV which caused him to be "cold" and tremble terribly. That finally stopped and they brought him into x-ray since they were sure he had some type of blockage. His vitals showed very low blood pressure (and Ed usually has high blood pressure due to this chemotherapy) and they pumped him full of a lot of fluids quickly (putting compression sleeves on the IV bags). They had decided they were going to insert a tube down his nose and throat into his abdomen to drain liquid from the top of the stomach. However, his vitals weren't getting better and they determined they wanted to do a CT scan to get a better look. Once they did this, they were convinced he had a perforated bowel. It was now about 3:00 AM.
A surgeon, Dr. Christopher Marvelli, came in to talk to us about this and the risks but that we really didn't have any choice. They needed to operate and quickly. And he was direct in the risks involved. He hopefully would find the hole and if he did would need to do a colostomy. If he coudn't find the hole or if things looked too bad, all he could do was close Ed up. Dr. Marvelli called Ed's oncologist Dr. Bowers. Dr. Bowers talked to Ed and then later called back to talk to me. Both doctors asked if I had someone I could call to be with me. Dr. Bowers told me "it didn't look good" and I should have someone with me and should call Dan as well. I needed to prepare for the worse. Both Ed and I trying to prepare but we clearly weren't prepared for this. Are you ever?
At 4:15 AM on Wednesday, 3/27, they took Ed into surgery and I was alone in the Kittredge Surgery Center at Cooley. Seriously, there was no one else there! Anyhow, Dr. Marvelli told me it could take about 2 hrs, but again, depended on what he found. Ed told me to be sure to call my sister Cathy to be with me. I promised him I would once he was in surgery. And I did. At 4:15 AM I called her to tell her that Ed had gone into surgery and "it didn't look good". I then called Dan and told him he needed to come home. I hesitated to contact my mother after what she's been through these past couple weeks with the lose of my brother. In fact, I hated "bothering" both my sister and Dan as well, but they all made it clear I needed to call them. I called my mother at 6:00 AM to let her know and she came over as well.
Dan arrived just around 7:00 AM and shortly after (around 7:15 AM), Dr. Marvelli came out to tell us that the surgery went well. There was a perforated bowel, clear liquid/air in the abdomen and he was able to do a colostomy. The anethesiologist (Dr. Lawlor), who we met at 4 AM, came out and explained how things went and that Ed had a breathing tube and that we could go up to the critical care unit in a little bit to see him.
We were so thankful.... A few hours earlier, we didn't know if Ed would make it out of surgery. Or, if he did, whether they were able to find and repair the perforation. We were so lucky.
Wednesday, March 27
Around 8 AM we went up to the critical care unit to see Ed. His doctor is Dr. Rick Levrault--a young, tall and handsome doctor (as described by Dr. Bowers). Dr. Bowers was there when I arrived--what a relief to see a friendly face--it meant sooo much to me. Dr. Levrault was terrific too though.
Ed was pretty much out of it and their first goal was to monitor him and maybe remove the breathing tube in the next day or two. I made phone calls to our priest Fr. Vern (who I did try to reach before Ed went into surgery), my sisters, folks at work, and a couple other of Ed's friends.
Ed's nurse was Christina and she was a gem! She was young and sweet and very attentive and caring (and cute/pretty...but that had nothing to do with her nursing abilities!). She was not working in the critical care unit again until Saturday which bummed Ed out.
After a couple hours, Ed was awake and with the breathing tube in, he could not talk, so he resorted to writing first on the palm of my hand and then we gave him a pen and he made notes on a piece of paper. Now mind you, it was not like he was sitting up writing a letter. Rather, he was laying back in the bed, head back, and using his one hand down on the bed to write out short words. He was quite ambitious and even used his energy to poke fun at all of us and to try to fix up Dan with his nurse Christina.
Fr. Vern came by to visit and gave Ed the Anointing of the Sick. That meant a lot. Dr. Marvelli and Dr. Lawlor both stopped by as well to check in on Ed. By early afternoon, Ed was breathing on his own and they could remove the breathing tube! Yeah, victory #1!
Dan and I headed home around 8 PM. I was exhausted (no sleep at all the night before) and Dan was tired since I woke him up at 4 AM and he had to drive 2hrs to get to the hospital. But we were happy the breathing tube was out!
Tuesday, 3/26
Ed was home again today. He continued to be fatigued and trying to find the right combination to regulate his bowel movements and deal with the diarrhea he was experiencing. I got home late from work after stopping at the grocery store to pickup some high fiber foods for Ed. I had leftovers and he had some soup and crackers. Around 9 PM we finally sat down in front of the TV. Ed used the bathroom and then came out and sat on the couch in tremendous pain. The pain was in the middle of his abdomen and it was so intense it was causing tears. I called 911 and the EMTs checked him out, got him into the ambulance, gave him some pain killers and we were on our way to Cooley Dickinson Hospital.
They put him on an IV which caused him to be "cold" and tremble terribly. That finally stopped and they brought him into x-ray since they were sure he had some type of blockage. His vitals showed very low blood pressure (and Ed usually has high blood pressure due to this chemotherapy) and they pumped him full of a lot of fluids quickly (putting compression sleeves on the IV bags). They had decided they were going to insert a tube down his nose and throat into his abdomen to drain liquid from the top of the stomach. However, his vitals weren't getting better and they determined they wanted to do a CT scan to get a better look. Once they did this, they were convinced he had a perforated bowel. It was now about 3:00 AM.
A surgeon, Dr. Christopher Marvelli, came in to talk to us about this and the risks but that we really didn't have any choice. They needed to operate and quickly. And he was direct in the risks involved. He hopefully would find the hole and if he did would need to do a colostomy. If he coudn't find the hole or if things looked too bad, all he could do was close Ed up. Dr. Marvelli called Ed's oncologist Dr. Bowers. Dr. Bowers talked to Ed and then later called back to talk to me. Both doctors asked if I had someone I could call to be with me. Dr. Bowers told me "it didn't look good" and I should have someone with me and should call Dan as well. I needed to prepare for the worse. Both Ed and I trying to prepare but we clearly weren't prepared for this. Are you ever?
At 4:15 AM on Wednesday, 3/27, they took Ed into surgery and I was alone in the Kittredge Surgery Center at Cooley. Seriously, there was no one else there! Anyhow, Dr. Marvelli told me it could take about 2 hrs, but again, depended on what he found. Ed told me to be sure to call my sister Cathy to be with me. I promised him I would once he was in surgery. And I did. At 4:15 AM I called her to tell her that Ed had gone into surgery and "it didn't look good". I then called Dan and told him he needed to come home. I hesitated to contact my mother after what she's been through these past couple weeks with the lose of my brother. In fact, I hated "bothering" both my sister and Dan as well, but they all made it clear I needed to call them. I called my mother at 6:00 AM to let her know and she came over as well.
Dan arrived just around 7:00 AM and shortly after (around 7:15 AM), Dr. Marvelli came out to tell us that the surgery went well. There was a perforated bowel, clear liquid/air in the abdomen and he was able to do a colostomy. The anethesiologist (Dr. Lawlor), who we met at 4 AM, came out and explained how things went and that Ed had a breathing tube and that we could go up to the critical care unit in a little bit to see him.
We were so thankful.... A few hours earlier, we didn't know if Ed would make it out of surgery. Or, if he did, whether they were able to find and repair the perforation. We were so lucky.
Wednesday, March 27
Around 8 AM we went up to the critical care unit to see Ed. His doctor is Dr. Rick Levrault--a young, tall and handsome doctor (as described by Dr. Bowers). Dr. Bowers was there when I arrived--what a relief to see a friendly face--it meant sooo much to me. Dr. Levrault was terrific too though.
Ed was pretty much out of it and their first goal was to monitor him and maybe remove the breathing tube in the next day or two. I made phone calls to our priest Fr. Vern (who I did try to reach before Ed went into surgery), my sisters, folks at work, and a couple other of Ed's friends.
Ed's nurse was Christina and she was a gem! She was young and sweet and very attentive and caring (and cute/pretty...but that had nothing to do with her nursing abilities!). She was not working in the critical care unit again until Saturday which bummed Ed out.
After a couple hours, Ed was awake and with the breathing tube in, he could not talk, so he resorted to writing first on the palm of my hand and then we gave him a pen and he made notes on a piece of paper. Now mind you, it was not like he was sitting up writing a letter. Rather, he was laying back in the bed, head back, and using his one hand down on the bed to write out short words. He was quite ambitious and even used his energy to poke fun at all of us and to try to fix up Dan with his nurse Christina.
Fr. Vern came by to visit and gave Ed the Anointing of the Sick. That meant a lot. Dr. Marvelli and Dr. Lawlor both stopped by as well to check in on Ed. By early afternoon, Ed was breathing on his own and they could remove the breathing tube! Yeah, victory #1!
Dan and I headed home around 8 PM. I was exhausted (no sleep at all the night before) and Dan was tired since I woke him up at 4 AM and he had to drive 2hrs to get to the hospital. But we were happy the breathing tube was out!
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| The ambulance that brought Ed to the ER. The BTown EMTs were terrific. |
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| Vitals while in the ER. High heart rate; low blood pressure. |
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| The surgery board at Cooley. Dr. Marvelli was Ed's surgeon. |
Saturday, March 23, 2013
A Week Later
Actually a week and a day since we had Michael's funeral service. Back to work this week. There were good days and bad days. Usually in the morning...you just wake up and have a heavy heart or are sad. Work is a good distraction and keeps my mind busy during the day. Then at night I'm just tired and so sleep is good and shuts out the world.
I'm learning to adjust to life without Michael. I didn't see Michael everyday so the moments of sadness are when my mind wanders to knowing he is gone and it will be the times, like Easter, that will be difficult. I worry most about my mother though. The two of them lived together for a number of years and therefore were companions in daily living. My mother is a strong woman and she will keep moving on, but I wish I could do something to ease her pain and make the sadness and grief go away more quickly. But as we all know, we all grieve in our own ways and on our own timelines. There is no right; there is no wrong. We just march on the best we can and I know my mother is doing this.
It has been a tough week for Ed. He is still struggling with constipation and fatigue. Sorry about talking about constipation again, but it is a natural bodily function and for anyone who has ever suffered from this, it is very painful and screws up your entire system. (And besides, he has colon cancer...so kinda hard to avoid these topics!) So Ed is struggling with that and on top of that is heavily fatigue. He did go into work Tuesday, didn't overdo it, and I saw some life in his eyes and color back on his face. But Wednesday was back to a bad day...very tired, not able to do anything. Thursday and Friday he did small things around the house, trying to find that balance between doing absolutely nothing and not overdoing it and tiring himself out. Still is not "regular" and so still trying to find the magic combination to solve that problem.
We were hoping to go away this weekend--I think it would be good for his spirits--but cancelled since he wants/needs to stay close to home. We'll see how he's feeling tomorrow. Maybe a day trip somewhere, just to get out of the house. I know part of the fatigue is due to his body fighting the cancer but I think part of it is psychological too. It's been a very tough couple weeks.
"One day at a time, sweet Jesus...that's all I'm asking of you..."
I'm learning to adjust to life without Michael. I didn't see Michael everyday so the moments of sadness are when my mind wanders to knowing he is gone and it will be the times, like Easter, that will be difficult. I worry most about my mother though. The two of them lived together for a number of years and therefore were companions in daily living. My mother is a strong woman and she will keep moving on, but I wish I could do something to ease her pain and make the sadness and grief go away more quickly. But as we all know, we all grieve in our own ways and on our own timelines. There is no right; there is no wrong. We just march on the best we can and I know my mother is doing this.
It has been a tough week for Ed. He is still struggling with constipation and fatigue. Sorry about talking about constipation again, but it is a natural bodily function and for anyone who has ever suffered from this, it is very painful and screws up your entire system. (And besides, he has colon cancer...so kinda hard to avoid these topics!) So Ed is struggling with that and on top of that is heavily fatigue. He did go into work Tuesday, didn't overdo it, and I saw some life in his eyes and color back on his face. But Wednesday was back to a bad day...very tired, not able to do anything. Thursday and Friday he did small things around the house, trying to find that balance between doing absolutely nothing and not overdoing it and tiring himself out. Still is not "regular" and so still trying to find the magic combination to solve that problem.
We were hoping to go away this weekend--I think it would be good for his spirits--but cancelled since he wants/needs to stay close to home. We'll see how he's feeling tomorrow. Maybe a day trip somewhere, just to get out of the house. I know part of the fatigue is due to his body fighting the cancer but I think part of it is psychological too. It's been a very tough couple weeks.
"One day at a time, sweet Jesus...that's all I'm asking of you..."
Saturday, March 16, 2013
Remembering Michael
Yesterday was Michael's funeral. Somehow, we made it through the week. Of course, we didn't have much choice. The gray, gloomy day on Monday and the rain on Tuesday matched our mood. But Wednesday the sun began to shine and we know it was God's and Michael's way to tell us we had to move on. That life continues and our job now was to remember Michael and to share with others the love he had for all of us.
Monday was difficult as we waited by the phone for the call from the medical examiner's office. It never came and so our grief turned a bit to anger. How could they tell us they would call us and we waited by the phone all day and no call came. We've all experienced that...waiting for a call or for a service person to come to the house--you wait, you listen, you don't dare do something that would cause you to miss the call or the doorbell or whatever. And then it never comes and then you're just pissed off!
So Tuesday when my Mom got the option to continue to wait or drive to the medical examiner's office in Worcester, she of course, elected to take control of this situation and drive to Worcester. No more waiting by the phone for these Jasmin ladies! And once she was able to meet with the medical examiner, then everything else started to fall into place. They were able to release Michael's body and the funeral home and the church could confirm when we could have his funeral. What a relief it was when we could finally say Friday at 9:30! It gave us a definite date and time to move forward to. And we were so thankful that this was not dragging into the following week!
With the funeral time set, we had our list of "to do's" (we like our checklists) and worked through them. We together picked out Michael's urn, made photo collages, finalized his obituary and eulogy, made necessary phone calls, made arrangements for the reception, and picked readings and hymns for the Mass.
Thursday was another cold and gray day and we asked Michael to warm things up a bit for Friday. And sure enough, the sun peeked over the horizon Friday morning and the day, although still cold, was sunny with a bright blue sky. Now, I don't know how much pull Michael really has up in Heaven and one could say God himself was listening to our prayers. But I also know that my brother could have nagged God for quite some time to grant us our wish!
Now I know this can sound odd, but Michael's funeral on Friday was a nice day. Not nice that we were laying my brother to rest. But that the Mass, the eulogy, the presence of friends and family--all of this could not have been better. It was a day to cry and a day to smile and laugh and hug and to remember Michael and to be gifted by the love of family and friends who were present either physically or in spirit and thought to support my family and celebrate Michael with us.
We are in awe at the number of people who turned out and the number of people who baked and helped with the reception. We know we are truly blessed and thank God for all of you.
After the reception, our family went out to lunch at Zoe's. It was a nice lunch--a typical Jasmin family get together. It was a quiet time to talk about the day and to spend a little more time together before we all went our separate ways.
My heart still aches and sadness still comes and I am still in awe that it was just a week ago that our lives changed forever. But it is a reminder of the importance of family and friends and living each day to the fullest and living it being kind and considerate of others and showing compassion, care, and love. I have the following quote on my refrigerator: "I've learned that you should always leave loved one with loving words. It may be the last time you see them." That is so true and I know my family finds comfort knowing that the last time each one of us saw Michael, we did leave him with loving words and a hug and there is no doubt that he knew we loved him and he loved us. That is living life with no regrets and if that is what we all need to be reminded of this week, then that is Michael's parting gift to us all.
May God bless you all and may Michael rest in peace with God and with our Dad and all our other departed relatives. Until we meet again...
Monday was difficult as we waited by the phone for the call from the medical examiner's office. It never came and so our grief turned a bit to anger. How could they tell us they would call us and we waited by the phone all day and no call came. We've all experienced that...waiting for a call or for a service person to come to the house--you wait, you listen, you don't dare do something that would cause you to miss the call or the doorbell or whatever. And then it never comes and then you're just pissed off!
So Tuesday when my Mom got the option to continue to wait or drive to the medical examiner's office in Worcester, she of course, elected to take control of this situation and drive to Worcester. No more waiting by the phone for these Jasmin ladies! And once she was able to meet with the medical examiner, then everything else started to fall into place. They were able to release Michael's body and the funeral home and the church could confirm when we could have his funeral. What a relief it was when we could finally say Friday at 9:30! It gave us a definite date and time to move forward to. And we were so thankful that this was not dragging into the following week!
With the funeral time set, we had our list of "to do's" (we like our checklists) and worked through them. We together picked out Michael's urn, made photo collages, finalized his obituary and eulogy, made necessary phone calls, made arrangements for the reception, and picked readings and hymns for the Mass.
Thursday was another cold and gray day and we asked Michael to warm things up a bit for Friday. And sure enough, the sun peeked over the horizon Friday morning and the day, although still cold, was sunny with a bright blue sky. Now, I don't know how much pull Michael really has up in Heaven and one could say God himself was listening to our prayers. But I also know that my brother could have nagged God for quite some time to grant us our wish!
Now I know this can sound odd, but Michael's funeral on Friday was a nice day. Not nice that we were laying my brother to rest. But that the Mass, the eulogy, the presence of friends and family--all of this could not have been better. It was a day to cry and a day to smile and laugh and hug and to remember Michael and to be gifted by the love of family and friends who were present either physically or in spirit and thought to support my family and celebrate Michael with us.
We are in awe at the number of people who turned out and the number of people who baked and helped with the reception. We know we are truly blessed and thank God for all of you.
After the reception, our family went out to lunch at Zoe's. It was a nice lunch--a typical Jasmin family get together. It was a quiet time to talk about the day and to spend a little more time together before we all went our separate ways.
My heart still aches and sadness still comes and I am still in awe that it was just a week ago that our lives changed forever. But it is a reminder of the importance of family and friends and living each day to the fullest and living it being kind and considerate of others and showing compassion, care, and love. I have the following quote on my refrigerator: "I've learned that you should always leave loved one with loving words. It may be the last time you see them." That is so true and I know my family finds comfort knowing that the last time each one of us saw Michael, we did leave him with loving words and a hug and there is no doubt that he knew we loved him and he loved us. That is living life with no regrets and if that is what we all need to be reminded of this week, then that is Michael's parting gift to us all.
May God bless you all and may Michael rest in peace with God and with our Dad and all our other departed relatives. Until we meet again...
CT Scan Results
In the midst of this awful week, Ed had a CT scan on Monday and we had an appointment with his doctor Tuesday morning to review the results. As our world is spinning around us, this event came and went and was hard to register in light of everything else.
In hindsight, prior to last Sunday, we were anticipating some "bad" news since Ed has not been feeling well (pain, fatigue, etc.). We thought for sure that the cancer was progressing. Of course, after the sudden passing of my brother on Sunday, we thought "how in the world could we get more bad news this week?" It would feel like kicking us while we were down.
Thankfully, though, there was no bad news. In fact, the results were anticlimatic which caused us to just move on and not really acknowledge that the results were not only not "bad" but they were "good". I guess in light of the events of this week, it was hard for us to categorize and recognize this as "good". But as I'm writing this I need to acknowledge that it was good news and a gift we should acknowledge and thank God for.
In summary, the CT scan showed no new growths. Some very minimal shrinkage and a couple spots of possible growth, but nothing that Dr. Bowers felt could accurately be measured (they were talking millimeters). Words such as the following appear in the report: "stable," "slightly smaller," "mild decrease". The final "impression" in the report:
So here I am, talking about bowel movements and constipation! And I need to because the constipation is resulting in terrible stomach cramps for Ed. Ed has Ducolax and Miralax and whatever other "lax" products you could find to try to manage this. So far he has not found the perfect solution but he's being good about taking this every day to help. In terms of body pain (bad, legs, buttocks), Dr. Bowers says he needs to take the Nucyenta every 4 hours. The prescription Ed has allows for this but Ed tends to hold off, not wanting to take it every 4 hours, like somehow he can manage through the pain. Not! So I hope Dr. Bowers convinced him it was okay and he should keep taking the pain medication every 4 hours to try to stay ahead of it. And the fatigue is learning to manage his time/life better. If he thinks he can do something for an hour, then only do it for 30 mins. Ed tends to overdue it and then pays the price afterwards. So he needs to unfortunately work fewer hours and rest more because it is when he overdoes it that he crashes and is down for several hours.
But this is new for Ed. He is used to the first 1.5 yrs-2 yrs when he went for treatment and then went to play golf afterwards. He had no side effects and so having to try to manage these effectively is new for us.
To help in the short-term and to give Ed a break, we have cut out the Irinotecan for the next 6 weeks. Since there are no new growths and we are staying ahead of the tumors, we agreed giving Ed a break from one of the chemo drugs would be good (he will remain on the Avastin and Xeloda). Dr. Bowers was clear we wouldn't go more than 6 weeks though before another CT scan. But hopefully giving Ed a little break and with the fact that spring may be arriving soon, will help give him the lift in spirit and energy that he needs right now.
In hindsight, prior to last Sunday, we were anticipating some "bad" news since Ed has not been feeling well (pain, fatigue, etc.). We thought for sure that the cancer was progressing. Of course, after the sudden passing of my brother on Sunday, we thought "how in the world could we get more bad news this week?" It would feel like kicking us while we were down.
Thankfully, though, there was no bad news. In fact, the results were anticlimatic which caused us to just move on and not really acknowledge that the results were not only not "bad" but they were "good". I guess in light of the events of this week, it was hard for us to categorize and recognize this as "good". But as I'm writing this I need to acknowledge that it was good news and a gift we should acknowledge and thank God for.
In summary, the CT scan showed no new growths. Some very minimal shrinkage and a couple spots of possible growth, but nothing that Dr. Bowers felt could accurately be measured (they were talking millimeters). Words such as the following appear in the report: "stable," "slightly smaller," "mild decrease". The final "impression" in the report:
- "Overall, numerous hepatic masses are very similar. Possible mild progression since 11/28/12."
- "Mild increase in amount of ascites."
So here I am, talking about bowel movements and constipation! And I need to because the constipation is resulting in terrible stomach cramps for Ed. Ed has Ducolax and Miralax and whatever other "lax" products you could find to try to manage this. So far he has not found the perfect solution but he's being good about taking this every day to help. In terms of body pain (bad, legs, buttocks), Dr. Bowers says he needs to take the Nucyenta every 4 hours. The prescription Ed has allows for this but Ed tends to hold off, not wanting to take it every 4 hours, like somehow he can manage through the pain. Not! So I hope Dr. Bowers convinced him it was okay and he should keep taking the pain medication every 4 hours to try to stay ahead of it. And the fatigue is learning to manage his time/life better. If he thinks he can do something for an hour, then only do it for 30 mins. Ed tends to overdue it and then pays the price afterwards. So he needs to unfortunately work fewer hours and rest more because it is when he overdoes it that he crashes and is down for several hours.
But this is new for Ed. He is used to the first 1.5 yrs-2 yrs when he went for treatment and then went to play golf afterwards. He had no side effects and so having to try to manage these effectively is new for us.
To help in the short-term and to give Ed a break, we have cut out the Irinotecan for the next 6 weeks. Since there are no new growths and we are staying ahead of the tumors, we agreed giving Ed a break from one of the chemo drugs would be good (he will remain on the Avastin and Xeloda). Dr. Bowers was clear we wouldn't go more than 6 weeks though before another CT scan. But hopefully giving Ed a little break and with the fact that spring may be arriving soon, will help give him the lift in spirit and energy that he needs right now.
Sunday, March 10, 2013
Loving You Always Mike
My heart has a whole in it. I am numb and the tears come without warning. My loving brother passed away last night. He passed from this life way too young and totally unexpected. He was only a year older than me and so we grew up together. This meant we fought like the dickens but there was also that bond--no matter what, he was my brother.
You had your cross your bear (don't we all), but you were there when Dad needed you in his final days caring so tenderly for him. And you have been there for Mom. We all found comfort knowing you were there in case anything happened to her and to do things to make her life easier.
You loved us all. You loved the holidays and looked forward to us all being together. You so loved your nieces and nephews. And how they all looked up to you. "Uncle Mike" You made them laugh, you spoiled them, and they loved you so.
Your life was cut way too short. But you lived life to the fullest...you worked hard, you played hard. You enjoyed the summers with golf and fishing and the winters with skiing and watching football and nascar.
The only comfort at this time is knowing you are with Dad...that life has come full circle. Our lives will never be the same. Our family will never be the same. You will be forever in our memories. And we love you so much!
Rest in peace my beautiful brother. May God take you in his gentle hand and lead you home...
You had your cross your bear (don't we all), but you were there when Dad needed you in his final days caring so tenderly for him. And you have been there for Mom. We all found comfort knowing you were there in case anything happened to her and to do things to make her life easier.
You loved us all. You loved the holidays and looked forward to us all being together. You so loved your nieces and nephews. And how they all looked up to you. "Uncle Mike" You made them laugh, you spoiled them, and they loved you so.
Your life was cut way too short. But you lived life to the fullest...you worked hard, you played hard. You enjoyed the summers with golf and fishing and the winters with skiing and watching football and nascar.
The only comfort at this time is knowing you are with Dad...that life has come full circle. Our lives will never be the same. Our family will never be the same. You will be forever in our memories. And we love you so much!
Rest in peace my beautiful brother. May God take you in his gentle hand and lead you home...
Saturday, March 9, 2013
Bright Sunny Saturday!
This morning I woke up to a bright sunny morning--not a cloud in the sky! Then I noticed our hibiscus is blooming. Both signs of spring that will be here before you know it. Yes, there is still snow on the ground from yesterday's storm--we got about 6-8" here. But we've had so many gray, snowy, rainy days, seeing the sunshine is so nice. I'm planning to take my morning walk outside to soak up some of this sunshine (versus the treadmill). And tonite we change the clocks. Yes, we lose an hour (which I'm not thrilled about) but it will be lighter later (it's so nice to drive home from work and have it still be light out). I do love the change of seasons in New England!
In terms of how Ed is doing. This week was better than last and I judge that by whether he had more "good" days than "bad". He only worked a few hours this week so he also was able to do a few things around the house. However, if he overdoes it, it does wear him out. He tires very easily. The stomach cramps seem to have subsided which is good. Overall a better week. Just in time for his next treatment. Ed has a CT scan on Monday and we'll meet with Dr. Bowers on Tuesday and he'll have his next infusion on Tuesday as well. So if there's any pattern developing (which we haven't been able to pin down quite yet), next week cramping and pain will return. It will be good though to hear whether the CT scan is showing any change since Ed is certainly feeling different.
I'll certainly keep you posted. Til then...enjoy the sunshine!
In terms of how Ed is doing. This week was better than last and I judge that by whether he had more "good" days than "bad". He only worked a few hours this week so he also was able to do a few things around the house. However, if he overdoes it, it does wear him out. He tires very easily. The stomach cramps seem to have subsided which is good. Overall a better week. Just in time for his next treatment. Ed has a CT scan on Monday and we'll meet with Dr. Bowers on Tuesday and he'll have his next infusion on Tuesday as well. So if there's any pattern developing (which we haven't been able to pin down quite yet), next week cramping and pain will return. It will be good though to hear whether the CT scan is showing any change since Ed is certainly feeling different.
I'll certainly keep you posted. Til then...enjoy the sunshine!
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| The 6-8" of snow we got on Friday. |
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| A beautiful bloom to brighten my Saturday morning! |
Sunday, February 24, 2013
After the Storm (actually, 2 weeks after)
Okay, so I wasn't very punctual about posting after the "Blizzard of 2013", or what is being called Storm Nemo.
Needless to say, we fared just fine. Ended up with about 18-20" here. Thankfully we never lost power--that is just terribly inconvenient! Here are some pictures from that day.
Out in Waltham, Dan got about 26" and didn't get plowed out until Sunday afternoon. He did a time lapse video which you can view here:
http://www.youtube.com/watch?v=9831yMvRcrU
His car is the one on the left so if you watch closely, you'll see Dan cleaning it off. Pretty cool!
Last weekend (Feb 17th), my mother and I drove out to see Dan to deliver some stuff and for Grandma to see the apartment. Grandma loved seeing the place and the two of them always seem to have things to talk about. It is a special relationship! Plus my mother and I got to spend 3 hrs together on the drive out and back so that was nice.
Ed was planning to go but was not feeling well and did not feel he could make the drive out. He has been experiencing stomach cramps, (which we think is due to irregularity) and pain in his shoulder (due to arthritis), pain in his butt and legs, and problems sleeping. We're trying to manage all of this but we haven't found the magic combination. He's got a combination of medications--Ducolax and Miralax (to treat constipation), Clyindamycin (to treat diarrhea), Nucynta (for pain), Lidoderm (Lidocaine patch for shoulder pain), and Tylenol PM (to help with sleep). He is also trying to stay off his feet for long periods of time. All of this is very draining on him and so he also lacks energy. And we have not found the right combination to get in front of all of this. So this has been very draining on him.
He did have an MRI on his shoulder and Dr. McBride (orthopedic specialist) gave him another shot to relief the pain. But that really hasn't helped and so they will need to discuss what, if any, next steps they will take. Ed has his next CT scan on March 10 so we'll see how things are going. But his biweekly appointments with Dr. Bowers shows really no significant changes--blood work and size of his liver continues to look stable.
It's just been tough on Ed lately being in constant pain and having no energy. And I'm trying to be helpful and patient, but there's not really anything I can do to help. We are three years into this journey so we do know we've been blessed to date. It would just be nice if we could figure this thing out. As Ed says, "it not bad enough I've got cancer, I've got to deal with all this as well?"
So we continue on. We find joy and are thankful that Dan is settling in to the next chapter of his life and we are looking forward to the spring. I love how the days are getting longer and Ed is making plans to regrip his golf clubs. So onward towards Spring!
Needless to say, we fared just fine. Ended up with about 18-20" here. Thankfully we never lost power--that is just terribly inconvenient! Here are some pictures from that day.
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| View of the back deck through the slider. |
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| View out the front window. |
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| View of the front deck out the front door. |
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| Me shoveling the back deck. |
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| I'm enjoying this too much |
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| Not sure Ed is enjoying this... |
Out in Waltham, Dan got about 26" and didn't get plowed out until Sunday afternoon. He did a time lapse video which you can view here:
http://www.youtube.com/watch?v=9831yMvRcrU
His car is the one on the left so if you watch closely, you'll see Dan cleaning it off. Pretty cool!
Last weekend (Feb 17th), my mother and I drove out to see Dan to deliver some stuff and for Grandma to see the apartment. Grandma loved seeing the place and the two of them always seem to have things to talk about. It is a special relationship! Plus my mother and I got to spend 3 hrs together on the drive out and back so that was nice.
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| Grandma and Dan having lunch together in his living room. |
Ed was planning to go but was not feeling well and did not feel he could make the drive out. He has been experiencing stomach cramps, (which we think is due to irregularity) and pain in his shoulder (due to arthritis), pain in his butt and legs, and problems sleeping. We're trying to manage all of this but we haven't found the magic combination. He's got a combination of medications--Ducolax and Miralax (to treat constipation), Clyindamycin (to treat diarrhea), Nucynta (for pain), Lidoderm (Lidocaine patch for shoulder pain), and Tylenol PM (to help with sleep). He is also trying to stay off his feet for long periods of time. All of this is very draining on him and so he also lacks energy. And we have not found the right combination to get in front of all of this. So this has been very draining on him.
He did have an MRI on his shoulder and Dr. McBride (orthopedic specialist) gave him another shot to relief the pain. But that really hasn't helped and so they will need to discuss what, if any, next steps they will take. Ed has his next CT scan on March 10 so we'll see how things are going. But his biweekly appointments with Dr. Bowers shows really no significant changes--blood work and size of his liver continues to look stable.
It's just been tough on Ed lately being in constant pain and having no energy. And I'm trying to be helpful and patient, but there's not really anything I can do to help. We are three years into this journey so we do know we've been blessed to date. It would just be nice if we could figure this thing out. As Ed says, "it not bad enough I've got cancer, I've got to deal with all this as well?"
So we continue on. We find joy and are thankful that Dan is settling in to the next chapter of his life and we are looking forward to the spring. I love how the days are getting longer and Ed is making plans to regrip his golf clubs. So onward towards Spring!
Friday, February 8, 2013
Before the Storm
Yes, it's Friday morning and the big Nor'easter is scheduled to arrive within the hour. I thought I'd do a quick up on the blog before the storm arrives since I'm sure my next post will be of piles of snow!
This week is what I would call trying to get back to "normal" now that Dan is settled into his new apartment. Now I HAVE to thank God that things worked out such that he moved in LAST weekend and that we had good weather for it. Could you imagine if we had planned to move this THIS weekend--would not have happened and really would have thrown a wrench into things. What I'm even more grateful for is that Dan only has a 4 mile drive home from work so I'm not worrying about him having to drive a distance in this storm.
Earlier this week Ed did go see his orthopedist again about his shoulder (since the shot he got last time didn't really help). They have scheduled an MRI for next Monday and then a follow-up appointment next Friday. So more to come on that (hopefully). He had his last chemo treatment yesterday. The tests show no change--which is good. He has another regular appointment in 2 weeks and then they'll do his next CT scan.
In terms of the body aches, queasiness, etc., it's all about trying to manage this. In terms of the leg pain Ed experiences it's when he's on his feet too long and so needs to learn how to manage this. Now that we've got Dan settled, maybe we can spend more time focusing on this.
Well, I hope you're all getting ready for the storm. I'll be sure to post afterwards. In the meantime, be safe!
This week is what I would call trying to get back to "normal" now that Dan is settled into his new apartment. Now I HAVE to thank God that things worked out such that he moved in LAST weekend and that we had good weather for it. Could you imagine if we had planned to move this THIS weekend--would not have happened and really would have thrown a wrench into things. What I'm even more grateful for is that Dan only has a 4 mile drive home from work so I'm not worrying about him having to drive a distance in this storm.
Earlier this week Ed did go see his orthopedist again about his shoulder (since the shot he got last time didn't really help). They have scheduled an MRI for next Monday and then a follow-up appointment next Friday. So more to come on that (hopefully). He had his last chemo treatment yesterday. The tests show no change--which is good. He has another regular appointment in 2 weeks and then they'll do his next CT scan.
In terms of the body aches, queasiness, etc., it's all about trying to manage this. In terms of the leg pain Ed experiences it's when he's on his feet too long and so needs to learn how to manage this. Now that we've got Dan settled, maybe we can spend more time focusing on this.
Well, I hope you're all getting ready for the storm. I'll be sure to post afterwards. In the meantime, be safe!
Sunday, February 3, 2013
Move In Day
Today we moved Dan into his new apartment in Waltham. Dan was home two weeks ago to get things packed up (over MLK weekend). Thankfully our brother-in-law Tim helped load the truck Friday night (since Dan was still in Beverly). This morning Ed and I drove out and met Dan at his new apartment. After unloading the truck and my car, I focused on cleaning and unpacking the kitchen and the bathroom and then made the bed. In the meantime, the guys (Dan, Ed, and Dan's friend Nate--whose family he has been staying with for the past 6 weeks) put together furniture and got the living room setup. Dan and I then headed to the grocery store. After that we returned the rental truck and then picked up pizza for dinner. Ed and I then drove back home getting home around 11 PM. A long day but Dan is fairly well settled in. There's still some unpacking he needs to do, but stuff he can do as he has time. And now that he only has a 15 min commute to/from work, he'll have plenty of time! We are so happy for him and thankful that he found a nice place to live close to work and not so far from home either.
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| Tim helping us load the truck Friday night. |
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| Bedroom - before |
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| Kitchen - before |
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| Living Room - before |
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| Bathroom - before |
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| Nate came to help! |
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| The boys working hard (got the TV setup and so "checking" the cable) |
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| Me enjoying a drink prepared by Dan. |
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| Living room - after (semi done) |
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| Bedroom -after |
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| Bathroom - after |
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| Kitchen - after |
Monday, January 21, 2013
Mid January Already?
Where does the time go? Can't believe it's mid-January already!
Dan spent the last three weeks in Beverly. He went back out at New Year's and just came back this weekend (Martin Luther King weekend). Our exciting news here is that he finally found a place to live! It's a one bedroom apartment in Waltham about 3.5 miles from work and, better yet, no highway driving for his commute. The 1.5 hr commute to/from Beverly every day is getting old. He can't move in until Feb 1st but that's less than 2 weeks away. So Dan came home this weekend so we could figure out what he had and needed for the apartment and also plan how we'll get him moved in. Dan and I went shopping yesterday for a few essentials from glasses to dishes to simple things like a trashcan! Needless to say, I'm having a lot of fun and can't wait to get him settled into his own place. I know he can't wait either. Nate and his family have been very generous allowing him to stay with them this past month and we can't thank them enough. It is like his second family.
Ed continues with his biweekly chemo treatments and has some good days and some not-so-good days. There are some days when he is tired and his stomach is queasy. He also saw an orthopedist because of his shoulder pain and this was confirmed as being arthritis. The pain in his shoulder can be pretty bad and he can't lie down to sleep because that makes it worse so sleeping has also been more difficult. Anyhow, he did get a cortisone shot a couple days ago and we're hoping that helps. If not, I'm not sure what our next options are.
Nothing new to report with me. Work continues to be very busy so that leaves little time for anything else. Me, Ed, and Dan did go to a UMass basketball game on Saturday which was a fun day just to get out and do something. They retired Marcus Camby's number so that was neat to see as well. I remember going to UMass games when Camby was playing--was it really almost 20 years ago?!?!
So I hope 2013 is starting off good for you. Stay warm!!
Dan spent the last three weeks in Beverly. He went back out at New Year's and just came back this weekend (Martin Luther King weekend). Our exciting news here is that he finally found a place to live! It's a one bedroom apartment in Waltham about 3.5 miles from work and, better yet, no highway driving for his commute. The 1.5 hr commute to/from Beverly every day is getting old. He can't move in until Feb 1st but that's less than 2 weeks away. So Dan came home this weekend so we could figure out what he had and needed for the apartment and also plan how we'll get him moved in. Dan and I went shopping yesterday for a few essentials from glasses to dishes to simple things like a trashcan! Needless to say, I'm having a lot of fun and can't wait to get him settled into his own place. I know he can't wait either. Nate and his family have been very generous allowing him to stay with them this past month and we can't thank them enough. It is like his second family.
Ed continues with his biweekly chemo treatments and has some good days and some not-so-good days. There are some days when he is tired and his stomach is queasy. He also saw an orthopedist because of his shoulder pain and this was confirmed as being arthritis. The pain in his shoulder can be pretty bad and he can't lie down to sleep because that makes it worse so sleeping has also been more difficult. Anyhow, he did get a cortisone shot a couple days ago and we're hoping that helps. If not, I'm not sure what our next options are.
Nothing new to report with me. Work continues to be very busy so that leaves little time for anything else. Me, Ed, and Dan did go to a UMass basketball game on Saturday which was a fun day just to get out and do something. They retired Marcus Camby's number so that was neat to see as well. I remember going to UMass games when Camby was playing--was it really almost 20 years ago?!?!
So I hope 2013 is starting off good for you. Stay warm!!
Wednesday, January 2, 2013
Happy New Year!
Happy 2013! I have to say I love how these holidays fell this year--two 4-day weekends in a row!
Christmas was a great time with family. Christmas Eve was spent with Ed's side of the family. After Christmas Eve Mass, we headed to Hardwick to celebrate with a potluck and Yankee Swap with our niece and nephew Missy & Dennis and various extended family (some people I don't even know!). It was a nice evening and it was great to see my great nieces and nephews--William, Grace, and Bryce. Christmas morning Ed, Dan, and I exchanged gifts and we could have just stayed home in our jammies but we were off to my Mother's to celebrate with my side of the family. Another fun-filled day exchanging gifts, eating way too much food, and just enjoying each other's company. My only complaint is that the day was over too quickly.
Dan was back to work Wed morning. He came back home Friday nite and was off again Monday morning (New Year's Eve day) since he had to work that day. Him and Nate then went into Boston to celebrate New Year's Eve and Ed and I did our usual stay home and watch the ball drop on TV.
Happy 2013!
Christmas was a great time with family. Christmas Eve was spent with Ed's side of the family. After Christmas Eve Mass, we headed to Hardwick to celebrate with a potluck and Yankee Swap with our niece and nephew Missy & Dennis and various extended family (some people I don't even know!). It was a nice evening and it was great to see my great nieces and nephews--William, Grace, and Bryce. Christmas morning Ed, Dan, and I exchanged gifts and we could have just stayed home in our jammies but we were off to my Mother's to celebrate with my side of the family. Another fun-filled day exchanging gifts, eating way too much food, and just enjoying each other's company. My only complaint is that the day was over too quickly.
Dan was back to work Wed morning. He came back home Friday nite and was off again Monday morning (New Year's Eve day) since he had to work that day. Him and Nate then went into Boston to celebrate New Year's Eve and Ed and I did our usual stay home and watch the ball drop on TV.
Happy 2013!
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| Santa has arrived! |
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| Nieces Lexi and Ali at Grandma's Christmas Day |
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| Nephews Nick and Matt |
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| Me and my sisters (L-R Theresa, Marion, Cathy, me) |
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| Me and Ed |
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| Dan and Grandma |
Saturday, December 22, 2012
Merry Christmas Weekend
I am so excited--it is Christmas weekend! I really like the fact that we've got an entire weekend plus Monday before Christmas. I have most everything done in preparation for Christmas except for those few things that you can't do until just before (like preparing some foods). So it will (hopefully) be a relaxing, enjoyable weekend with Ed and Dan. Last night I baked up some Cranberry Nut Bread and it filled the house with the wonderful smells of Christmas.
The best gift is that Dan came home last nite after work. He surprised me by getting home earlier than I thought (he got out of work early). I know...he's only been gone 4 days...but I love having my family together. It sounds like his new job is going really well and he enjoys the people and the work. It also sounds like a very nice place to work. Now if we can just find him a place to live. Although Nate and his family have been very welcoming of Dan and making him feel at home which I soooo appreciate. They better be careful, though--he may not want to leave!
Well, I'm off to be productive but before I do, I want to wish all of you a very Merry Christmas and hope you have the opportunity to spend the holiday with family and friends!
The best gift is that Dan came home last nite after work. He surprised me by getting home earlier than I thought (he got out of work early). I know...he's only been gone 4 days...but I love having my family together. It sounds like his new job is going really well and he enjoys the people and the work. It also sounds like a very nice place to work. Now if we can just find him a place to live. Although Nate and his family have been very welcoming of Dan and making him feel at home which I soooo appreciate. They better be careful, though--he may not want to leave!
Well, I'm off to be productive but before I do, I want to wish all of you a very Merry Christmas and hope you have the opportunity to spend the holiday with family and friends!
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| Everyone seems to be posting on FB what their "Elf on a Shelf" brought their child. So Ed took this picture of what our "Elves on a Shelf" brought us!! |
Sunday, December 16, 2012
An Exciting Week
Wow--what a week it has been!
I am thrilled to share that Dan got a full-time job in his field of study (architecture). He interviewed on Friday, December 7th, was offered a job and accepted it by the 11th, and starts on Tuesday, 12/18. He'll be working at Donald Lang Architects in Waban (Newton), MA, as an Architectural Designer. Waban is about 1.5 hrs from here so he will be staying with his friend Nate and his family in Beverly until he can find a place of his own.
So this past week, Dan has been working full-time at ES (he usually only works 18-20 hrs) since he was only able to give a 1-week notice. On top of that we've been trying to find a place for him to live and he has also been trying to get ready for Christmas since he now has less time for that than originally planned. It is all good though.
I am sorry to report that Dan and Cassie have broken up. They have been together for about 3.5 (almost 4) years. The past 1.5 yrs have been tough on them as they have been apart (Cassie in NY and Dan in RI then at home). I wish them both the best--they are both sweet people and I hope they still remain friends since they so enjoyed each other's company and doing things together. But both their lives have changed since graduating college and that just makes it tough.
And in more bad news, Wednesday night Ed called me at work to let me know Dan needed to go to the ER. He dropped a sheet of glass on his foot and it landed on the top of his left foot giving him a good gash (yes, he was barefoot). Our neighbor Kay (retired ER nurse) came over and confirmed it needed stitches and she wrapped it up and called her friends at the Mary Lane ER to let them know we were on our way. It required 5 stitches and thankfully Dan is getting around fine with it--just needs to change the bandage daily and then get stitches out in 7-10 days (which we're trying to figure out since he'll be in Newton/Beverly and then it's Christmas).
Ed had another treatment this past week and continues to experience stomach pain but he's trying to cope although it is slowing him down and he's tired and having some level of pain most days. I'm trying to be patient, but anyone who knows me, knows I'm not the most patient person in the world (poor Ed).
Of course, as much as I was beginning to think I needed less drama in my life, the events in Newtown, CT unfolded Friday and put my life in perspective. As with many of you, we are deeply saddened by this tragic event and we are reminded to hold our loved ones closer and cherish each day. May God bless the victims of that tradegy and may their families be comforted by our prayers.
Today we put up our tree so it's beginning to feel a bit more like Christmas around here. It will be so odd not having Dan with us this week, but he'll be home next weekend and thankfully has both Christmas Eve and Christmas Day off so he'll be home from Friday night and go back Wednesday early morning (he'll drive right to work). We have loved having him home with us this past year and I keep reminding myself that we're lucky he's "only" 1.5 hrs away.
If I don't get a chance to write again in the next week, may you have a Merry Christmas!
I am thrilled to share that Dan got a full-time job in his field of study (architecture). He interviewed on Friday, December 7th, was offered a job and accepted it by the 11th, and starts on Tuesday, 12/18. He'll be working at Donald Lang Architects in Waban (Newton), MA, as an Architectural Designer. Waban is about 1.5 hrs from here so he will be staying with his friend Nate and his family in Beverly until he can find a place of his own.
So this past week, Dan has been working full-time at ES (he usually only works 18-20 hrs) since he was only able to give a 1-week notice. On top of that we've been trying to find a place for him to live and he has also been trying to get ready for Christmas since he now has less time for that than originally planned. It is all good though.
I am sorry to report that Dan and Cassie have broken up. They have been together for about 3.5 (almost 4) years. The past 1.5 yrs have been tough on them as they have been apart (Cassie in NY and Dan in RI then at home). I wish them both the best--they are both sweet people and I hope they still remain friends since they so enjoyed each other's company and doing things together. But both their lives have changed since graduating college and that just makes it tough.
And in more bad news, Wednesday night Ed called me at work to let me know Dan needed to go to the ER. He dropped a sheet of glass on his foot and it landed on the top of his left foot giving him a good gash (yes, he was barefoot). Our neighbor Kay (retired ER nurse) came over and confirmed it needed stitches and she wrapped it up and called her friends at the Mary Lane ER to let them know we were on our way. It required 5 stitches and thankfully Dan is getting around fine with it--just needs to change the bandage daily and then get stitches out in 7-10 days (which we're trying to figure out since he'll be in Newton/Beverly and then it's Christmas).
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| Dan at Mary Lane ER waiting for the doctor. |
Ed had another treatment this past week and continues to experience stomach pain but he's trying to cope although it is slowing him down and he's tired and having some level of pain most days. I'm trying to be patient, but anyone who knows me, knows I'm not the most patient person in the world (poor Ed).
Of course, as much as I was beginning to think I needed less drama in my life, the events in Newtown, CT unfolded Friday and put my life in perspective. As with many of you, we are deeply saddened by this tragic event and we are reminded to hold our loved ones closer and cherish each day. May God bless the victims of that tradegy and may their families be comforted by our prayers.
Today we put up our tree so it's beginning to feel a bit more like Christmas around here. It will be so odd not having Dan with us this week, but he'll be home next weekend and thankfully has both Christmas Eve and Christmas Day off so he'll be home from Friday night and go back Wednesday early morning (he'll drive right to work). We have loved having him home with us this past year and I keep reminding myself that we're lucky he's "only" 1.5 hrs away.
If I don't get a chance to write again in the next week, may you have a Merry Christmas!
Sunday, December 9, 2012
Time to Get Ready for Christmas
I just returned from a business trip in Tallahassee. It was a good meeting and the weather was beautiful (in the upper 70s). But I was away three days and at this time of year that is so hard. It took me a bit to get back in the groove on Saturday, but as of today I am back into being productive. It's a good thing too since Christmas is just 2 weeks away! Gasp! How did that happen?!
Thankfully I've got most of my shopping and baking done. Ed and Dan put some outside decorations up a couple weeks ago and today Ed did more decorating inside while I worked on Christmas cards.
Ed has not been feeling well the last several days and spent all day Saturday in bed. He's tired and his stomach is bothering him and he's achy. He's up today though doing some decorating so that's a good sign. Here's hoping things improve, but he does have another treatment this week so who knows what that will bring. Well, need to go turn on the Christmas lights. I love this time of year. I just wish it lasted longer.
Thankfully I've got most of my shopping and baking done. Ed and Dan put some outside decorations up a couple weeks ago and today Ed did more decorating inside while I worked on Christmas cards.
Ed has not been feeling well the last several days and spent all day Saturday in bed. He's tired and his stomach is bothering him and he's achy. He's up today though doing some decorating so that's a good sign. Here's hoping things improve, but he does have another treatment this week so who knows what that will bring. Well, need to go turn on the Christmas lights. I love this time of year. I just wish it lasted longer.
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| An Elf on a Shelf arrived on December 1st thanks to my sister Theresa |
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| Stayed at the Doubletree while in Tallahassee. They take good care of the Hilton HHonors members! |
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| The view from my room. Capital building directly in the middle. Turlington Buiding to the right where our client is located (the Dept of Ed). |
Sunday, December 2, 2012
Celebrating Three Years
Here we are....three years after Ed's original diagnosis. Hard to believe it's been 3 years, but we are very grateful. We never thought of or imagined three years. At the time of the diagnosis, we were hoping for 6 months, then another 6 months, and then another. Milestones are harder to set at this time since we never thought beyond those first few milestones. And with every CT scan or any random day of the week, I keep waiting for the gauntlet to fall. I know it's looming over our heads ready to strike at any moment, but it hasn't and so we continue to press on and live life to the fullest. We realize that, although Ed is living with cancer, the key is that he is "living". There are so many people who have passed in the past three years either due to this terrible disease or for some other unforeseen tragedy and we realize how lucky we are and are continually reminded how every day is and remains a gift.
And although there are days like today where Ed is in pain and he doesn't feel well and goes back to bed, the good days outnumber the bad and there are so many who are so much worse off, dealing with terrible health issues or have sudden tragedies and lose loved ones. So instead of focusing on our negatives, we continually remind ourselves of the positive and that's a much healthier perspective to have in life.
Ed did have a CT scan last week and the good news is that there are no new growths. His shoulder pain looks like arthritis and Dr. B will be referring him to the orthopedist. He also gave him some stronger pain medication and a prescription for a Lidoderm patch which should help with the pain in the meantime. This is the biggest issue Ed is having right now and the pain keeps him awake at night. The pain meds and patch seem to help and it will be good when he can see an orthopedist. I am glad that we asked them to look at this area more closely during the CT scan. At least now we can rule out cancer in that area as the cause of the pain.
In terms of the cancer, the lungs are stable; lymph nodes in the neck are down. Tumors in the chest have shrunk and no changes in the liver. This is all good news since it means the current treatment regimen is effective at knocking down the tumors and/or keeping them at bay.
There was some evidence of additional fluid in the abdomen and the mesentery (described as the "saran wrap" holding intestines) is more prominent and could be causing some weeping of fluid into the abdomen. Difficult to tell though and something to watch in the future.
Ed's white and red blood counts are okay; liver function test is slightly elevated but same as September and there is no protein in the urine.
So, in other words...no significant changes and the current regimen is keeping the tumors from growing. So we'll continue with the current treatment pattern for now.
Thank you all for your continued thoughts and prayers!
And although there are days like today where Ed is in pain and he doesn't feel well and goes back to bed, the good days outnumber the bad and there are so many who are so much worse off, dealing with terrible health issues or have sudden tragedies and lose loved ones. So instead of focusing on our negatives, we continually remind ourselves of the positive and that's a much healthier perspective to have in life.
Ed did have a CT scan last week and the good news is that there are no new growths. His shoulder pain looks like arthritis and Dr. B will be referring him to the orthopedist. He also gave him some stronger pain medication and a prescription for a Lidoderm patch which should help with the pain in the meantime. This is the biggest issue Ed is having right now and the pain keeps him awake at night. The pain meds and patch seem to help and it will be good when he can see an orthopedist. I am glad that we asked them to look at this area more closely during the CT scan. At least now we can rule out cancer in that area as the cause of the pain.
In terms of the cancer, the lungs are stable; lymph nodes in the neck are down. Tumors in the chest have shrunk and no changes in the liver. This is all good news since it means the current treatment regimen is effective at knocking down the tumors and/or keeping them at bay.
There was some evidence of additional fluid in the abdomen and the mesentery (described as the "saran wrap" holding intestines) is more prominent and could be causing some weeping of fluid into the abdomen. Difficult to tell though and something to watch in the future.
Ed's white and red blood counts are okay; liver function test is slightly elevated but same as September and there is no protein in the urine.
So, in other words...no significant changes and the current regimen is keeping the tumors from growing. So we'll continue with the current treatment pattern for now.
Thank you all for your continued thoughts and prayers!
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