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.
Sunday, March 31, 2013
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! |
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