Yesterday was busy, with Daniel going to school and all, that at the end of the day I chose sleep over blogging haha.
His day was wonderful, and no major problems. Apparently he didn't want to share the 5 Frisbees with the other children, and he needs to learn how to put his own shoes on. Other than that he was very well behaved and he had a lot of fun. When we arrived, we changed his shoes into his indoor shoes, and he hugged and kissed us and he was off! I wanted him to miss us just a little bit, but I am so pleased that there were no tears and that he is confident enough to not worry about school! We asked how is day was and he said "good" and then we asked what he did and he said "I don't know". Then, when we asked what the other children's names were, again he said "I don't know". Charming. Apparently this goes on for quite some time, and then changes to "nothing" as in, "what did you do today", "nothing". lol Thank goodness for teachers!! He wanted to go again today, but thankfully Bieke was taking him to the Donkey farm, and that is definitely more fun that school. lol. So we all survived the day, and I only had a few tears fall. So few that you couldn't even call it a cry, but perhaps just a little bit of welling. :)
His trip with Bieke was a huge success, and he just loves animals! He returned very tired and with 2 "I love donkeys" tattoos! Thank you Bieke, and I am sorry I was out when you returned him to us! If I hadn't stopped at Tim Horton's for a coffee for Barry on the way home from the pharmacy, I would have made it in time. That being said, Barry without his coffee is not a good thing lol. Daniel had so much fun, with you and with the donkeys. xxx
The nurse came for a visit this morning. She was very nice and very helpful. She asked lots of questions, and seemed to really care about Barry's health and comfort. His blood pressure is good at 104/64. Since the operation, that is normal for him, so that's one thing in his favour! She was very concerned about his mobility, due to his knee, so she has requested that the physiotherapist, John, find him a walker to use at home and for short walks and a wheelchair for trips to the store, hospital, etc, where more walking is involved. This was mentioned to Barry weeks ago as an option available to him, but he turned it down. His knee was improving thanks to John, but he woke up a few days ago back to where it was pre-John. He is getting frustrated because Barry is a doer. He likes to be active, and to take care of everyone else (Daniel and I). Now that he can't it really bothers him. He also tripped the other day and although he didn't fall, he jarred and twisted his knee. Purely from that perspective, I am glad the walker is coming. John is coming on Friday morning for a quick visit, so hopefully he will bring the chair and the walker with him. On an emotional level, it has to be hard for Barry to admit to needing these, or at least allowing them indoors. I get sad, to see this rugged man needing this sort of assistance. I think part of the problem is that he is weak. Since the operation, and not being as active, and not sleeping well, he has become weak. Not weak as in he can't do anything, just weaker than the super strong man he was before. Just a hard day, I think, coping with these changes.
Barry, I am proud to report, still has a full head of hair! Not one strand appears to be missing. They said his facial hair would fall out too, and I think Barry was actually looking forward to not shaving!
We are not looking forward to Monday, so I will leave writing about that for perhaps the next post. (Monday is the first Chemotherapy treatment). I will also know more tomorrow, as we are meeting with the oncologist, Dr. Knight, tomorrow.
We have had some more cards come in over the last few days:
1. My Aunt Kim and Uncle Bill from Fergus. Barry loved the 50 pennies you laboriously taped inside his card! Thank you :)
2. Diane Vacheff from Fenwick Ontario. She is known as Mom V and is my good friend Corie's mom. Thank you for praying every day for Barry xx
3. Bieke and family from Guelph. Bieke was my big sister when I was very young, and we have a wonderful friendship today. Your support has been wonderful, and Daniel loves seeing you!!
4. Steve and Karen, from Australia. Steve is Barry's brother. Your card made us laugh so hard and then cry with the warmth of your words! We love you!
5. Allan, Deb and Michelle Stopher, from Thorold Ontario. Allan is Barry's cousin. Thank you for pointing out the signs that Barry is 50 lol. Barry is looking forward to saying "I beat this"!! xx
6. Dot and Gray Horne from England. Dot is Barry's first wife Wendie's mum. We hope to see you soon! xxx
7. Jill and Jean Ooms from British Columbia, Canada. Jill is friends of Jenny, who is Barry's brother's girlfriend's mum and Jill has breast cancer. She has given us so much support, while going through her own battle, and having never met us. Thank you, and you are an amazing woman xxx
8. Beth Morton from Winnipeg. Beth is a fellow blogger. Thank you for the card! The coffee never stops with Barry lol. You are also in our thoughts while you brave your own cancer battle xx
9. Wendie and Bernie Jarvis from Missouri. Wendie is Barry's first wife. Well, Wendie, who would have thought we would be friends? But your support and friendship has meant the world to us over the past weeks. When are you moving here?? J/K !! xxx
10. Bill, Sally and Trevor Rostron from Burlington, Ontario. That was one classy card, Bill! haha. Barry laughed and knew you had picked it out. You have been a great friend to Barry and never cease to make him laugh and smile xxx
11. Daphne and Jeff Browning from England. Barry is now thinking of himself as two 25 year olds! xxx
Thanks to everyone so far, and we look forward to those that are going to arrive this week (and next due to postal strikes, slow postal systems, and forgetfulness lol).
I also want to thank you all for faithfully reading this blog. I can't say enough times how much this means to Barry, and to me!
Lots of love, from us to you xxxxx
Wednesday, September 9, 2009
Monday, September 7, 2009
Our Long Weekend
So it has been a few days since I updated this, but not much has been happening. Today is Labour Day, therefore a long weekend. To be honest, its just another day tacked onto our weekend.
Saturday morning, bright and early, we had a yard sale. It was our first ever, and most likely our last lol. We used to sell on Ebay, but with not enough time in a day, and Barry's stamina not quite what it used to be, we decided to pack it in. So, a yard sale seemed like the best way to go. It was a lot of work, but fun.
Samantha, my sister, and Melody, my cousin came to help. My aunt also helped at the beginning and end. Daniel sat and played in the dirt and had a ball, getting so dirty his bath water afterwards looked something like coffee. Barry sat out for quite a while in two bouts. He was a trooper and smiled lots, talking with all the buyers, wheeling and dealing!
We met this woman, MaryAnne, who had colon cancer and she was such a kind person. She used to work at/run (not sure) the Canadian Cancer Society here in Guelph, but then gave it up when the sad stories started to become too much. She was such a warm, kind person, and she reached out to Barry and I in such a selfless way. She gave us her phone number and told us to call her. She shared her story with Barry, and I got teary while she spoke because she genuinely seemed to care. A stranger, and she was moved with Barry's battle. I fully intend to call her. Our meeting, our paths crossing, was not random. Wendie (Barry's first wife) always say that everything happens for a reason, and I completely believe that too! We may not find out why our lives are intertwined, but it was such a moving experience meeting her, that I am certain there is a reason. She didn't have pity in her eyes when she heard about Barry like most strangers do....she had something else, something more. A sadness, but encouragement and hope? I don't mean to sound corny, but there was something there.
I, and I welcome telling off for this, did not wear sun screen and my face got burnt. Bright red, like a ripened tomato! It hurt, it made me hot, and it made me mad. I felt so foolish. My husband has melanoma, and I am forgetful and foolish enough not to wear sun screen when spending the entire morning outside! Bad, bad, bad, bad, BAD!
Sunday we had a quiet kind of day. I forced myself to go to Walmart to buy Daniel some new shoes for school, but left the boys at home. I was sore in places I have never been sore before, and hope to never be sore again. I did a lot of lifting of the tables, 3 times, and my body was sore lol. So I got the shoes, and a few other bits, and came home. Nothing spectacular, and it was a nice and lazy, well deserved, quiet kind of day. Lovely!
Today, the Legends (not the Leg Ends), aka Barry's Ma and Pa, came for a visit. They were on a mission for pictures, a secret to Barry, and it was disguised as a casual visit. Daniel loves when they visit, and actually didn't want them to go today! Bless him. He had so much fun playing engines with Nanny on the floor, and showing her his imaginary pets (which includes one of every animal he knows about)!
Barry's dad is a healer (excuse my forgetfulness as to the correct terminology). On this visit and the last he has placed his hands on Barry and worked to heal him. Its nice to watch, hoping that it works, and to see Barry and his Dad sharing that tender moment. Every night around 1030pm Stan holds a picture of Barry and clears his mind, asks for guidance, and works to heal Barry. I know I am not doing this any justice, but it has worked on others in the past, he can do this, and I am so moved that he is doing this. We have no way of knowing that his healings work, but I am confident that something is keeping Barry strong. The doctors may have no hope, but we do, the people that love and care for Barry do, and I know that something is keeping the cancer from making him feel its presence. There have been no headaches, no sign of these lesions on his brain, except in the MRI results. Faith is a strange thing to hold onto, but I have it, and I know many others do. Keep those hands working Stan, they are powerful...
Tomorrow is Daniel's first full day of school! My emotions are all over the board here, which I have been told by experienced mothers is normal. He is only 3 and is starting junior kindergarten. 3!! Still a baby, really! Although Barry and his father point out to me that he is growing up. I don't like to hear that, and I can admit that he will always be my baby, regardless of his age! :) So we got him new shoes, chose one of his blankets to bring to school for nap time, decided what to pack in his lunch, and had a good long chat about the fun things he might do at school. He was so excited that there will be red paint, and red crayons to use lol. Red is his absolute favourite colour! So I know I am going to cry when kisses Barry and I goodbye and runs off to play with the farm he has been waiting so patiently waiting to play with since our last visit. He is super excited and I am sure he will miss us for a few seconds, and then he will have too much fun to think of us lol. I am glad he is so excited, and glad that he isn't worried about leaving us for the day, but he is still my little boy! I am not sure I am ready for this. I know its silly, I do. And I am sure Barry and I will enjoy this piece of freedom, just maybe not tomorrow!
Daniel doesn't know this yet, but Bieke is taking Daniel to the donkey sanctuary here in Guelph on Wednesday! He is going to be sooo happy to go back again. He talked about it so much after the last visit. Bieke, you are wonderful to take him! You are going to make this little boy VERY VERY happy! xxxx
This week should be fairly quiet, in regards to appointments. So far its just John the physio guy, and the nurse, then a visit to Dr. Knight, the oncologist. That's a slow week.
I know I am forgetting stuff that I wanted to write about, but perhaps tomorrow it will come to me when I am not so emotional about Daniel's first day lol.
Lots of love to you all, and thank you for the wonderful and unending support!
xxxxx
Saturday morning, bright and early, we had a yard sale. It was our first ever, and most likely our last lol. We used to sell on Ebay, but with not enough time in a day, and Barry's stamina not quite what it used to be, we decided to pack it in. So, a yard sale seemed like the best way to go. It was a lot of work, but fun.
Samantha, my sister, and Melody, my cousin came to help. My aunt also helped at the beginning and end. Daniel sat and played in the dirt and had a ball, getting so dirty his bath water afterwards looked something like coffee. Barry sat out for quite a while in two bouts. He was a trooper and smiled lots, talking with all the buyers, wheeling and dealing!
We met this woman, MaryAnne, who had colon cancer and she was such a kind person. She used to work at/run (not sure) the Canadian Cancer Society here in Guelph, but then gave it up when the sad stories started to become too much. She was such a warm, kind person, and she reached out to Barry and I in such a selfless way. She gave us her phone number and told us to call her. She shared her story with Barry, and I got teary while she spoke because she genuinely seemed to care. A stranger, and she was moved with Barry's battle. I fully intend to call her. Our meeting, our paths crossing, was not random. Wendie (Barry's first wife) always say that everything happens for a reason, and I completely believe that too! We may not find out why our lives are intertwined, but it was such a moving experience meeting her, that I am certain there is a reason. She didn't have pity in her eyes when she heard about Barry like most strangers do....she had something else, something more. A sadness, but encouragement and hope? I don't mean to sound corny, but there was something there.
I, and I welcome telling off for this, did not wear sun screen and my face got burnt. Bright red, like a ripened tomato! It hurt, it made me hot, and it made me mad. I felt so foolish. My husband has melanoma, and I am forgetful and foolish enough not to wear sun screen when spending the entire morning outside! Bad, bad, bad, bad, BAD!
Sunday we had a quiet kind of day. I forced myself to go to Walmart to buy Daniel some new shoes for school, but left the boys at home. I was sore in places I have never been sore before, and hope to never be sore again. I did a lot of lifting of the tables, 3 times, and my body was sore lol. So I got the shoes, and a few other bits, and came home. Nothing spectacular, and it was a nice and lazy, well deserved, quiet kind of day. Lovely!
Today, the Legends (not the Leg Ends), aka Barry's Ma and Pa, came for a visit. They were on a mission for pictures, a secret to Barry, and it was disguised as a casual visit. Daniel loves when they visit, and actually didn't want them to go today! Bless him. He had so much fun playing engines with Nanny on the floor, and showing her his imaginary pets (which includes one of every animal he knows about)!
Barry's dad is a healer (excuse my forgetfulness as to the correct terminology). On this visit and the last he has placed his hands on Barry and worked to heal him. Its nice to watch, hoping that it works, and to see Barry and his Dad sharing that tender moment. Every night around 1030pm Stan holds a picture of Barry and clears his mind, asks for guidance, and works to heal Barry. I know I am not doing this any justice, but it has worked on others in the past, he can do this, and I am so moved that he is doing this. We have no way of knowing that his healings work, but I am confident that something is keeping Barry strong. The doctors may have no hope, but we do, the people that love and care for Barry do, and I know that something is keeping the cancer from making him feel its presence. There have been no headaches, no sign of these lesions on his brain, except in the MRI results. Faith is a strange thing to hold onto, but I have it, and I know many others do. Keep those hands working Stan, they are powerful...
Tomorrow is Daniel's first full day of school! My emotions are all over the board here, which I have been told by experienced mothers is normal. He is only 3 and is starting junior kindergarten. 3!! Still a baby, really! Although Barry and his father point out to me that he is growing up. I don't like to hear that, and I can admit that he will always be my baby, regardless of his age! :) So we got him new shoes, chose one of his blankets to bring to school for nap time, decided what to pack in his lunch, and had a good long chat about the fun things he might do at school. He was so excited that there will be red paint, and red crayons to use lol. Red is his absolute favourite colour! So I know I am going to cry when kisses Barry and I goodbye and runs off to play with the farm he has been waiting so patiently waiting to play with since our last visit. He is super excited and I am sure he will miss us for a few seconds, and then he will have too much fun to think of us lol. I am glad he is so excited, and glad that he isn't worried about leaving us for the day, but he is still my little boy! I am not sure I am ready for this. I know its silly, I do. And I am sure Barry and I will enjoy this piece of freedom, just maybe not tomorrow!
Daniel doesn't know this yet, but Bieke is taking Daniel to the donkey sanctuary here in Guelph on Wednesday! He is going to be sooo happy to go back again. He talked about it so much after the last visit. Bieke, you are wonderful to take him! You are going to make this little boy VERY VERY happy! xxxx
This week should be fairly quiet, in regards to appointments. So far its just John the physio guy, and the nurse, then a visit to Dr. Knight, the oncologist. That's a slow week.
I know I am forgetting stuff that I wanted to write about, but perhaps tomorrow it will come to me when I am not so emotional about Daniel's first day lol.
Lots of love to you all, and thank you for the wonderful and unending support!
xxxxx
Friday, September 4, 2009
Radiation Down, Chemo to Go...
I am so proud of Barry. He has finished the radiation! Today was his last zapping as he calls it.
And touch wood, he has had no side effects as of yet. No headaches, no nausea. And so far, no hair loss! lol I am sure that is to come, so they keep telling us. I think he is worried what lies underneath his full head of hair, but hats and bandannas can cover up any bumps or blemishes.
Today was a good day. We had lunch, and Barry ate probably 95% of his meal, so that's an accomplishment in itself. Yesterday he was feeling under the weather, but we think that was down to eating and things not sitting well with him. I was like a mother hen, constantly asking how he was, paranoid that it was something more than what it was. I didn't like that feeling, and I have to try to relax and not panic lol. Not so easy for me!
The stories that I have come in about fond, funny, silly stories about Barry are great. Send more! lol. I will make a special post when I have more. So Steve, Dot, AJ, to call out a few people, send in your stories!
Had a lovely message on face book from the lovely Steve Walker! Looks like he is planning a trip from Australia to the Great White North! You should have seen Barry's face light up at the mention of that! When Steve told him he was beaming and he looked like a child on Christmas morning. So the plans are in the works and Barry, again, has something to look forward to! Steve, you are the best brother and brother in law EVER! Honestly, you have been a rock for Barry, and don't tell him I am blabbing this to everyone, but the one thing he said when a time limit was placed on his live was that he wanted to see you, no matter what the timeline was. And he said this while crying. You are the best. He would have never have asked you to come, so it means so much that you want to come and see him. xxxx
Daniel was sad today because it was not a school day lol. Funny boy :) He goes for a full day on Tuesday, so we shall see what he thinks after being left all day at school lol. I think he will have so much fun he won't even miss us until we're back to collect him at the end of the day! haha
We are having a yard sale tomorrow, so I am going to end this quickly so I can get enough sleep to be up and alert first thing in the morning! Lots of work to get it all out and set up.
Oh... I think tonight Barry looks a little pink. So perhaps he does have a side effect, now that I think of it. They said he may get a pinkish flush to his skin. His neck looks pink, like he is warm.
On that note, I will leave you with Aeorsmith below!
Lots of love and hugs xxxx
And touch wood, he has had no side effects as of yet. No headaches, no nausea. And so far, no hair loss! lol I am sure that is to come, so they keep telling us. I think he is worried what lies underneath his full head of hair, but hats and bandannas can cover up any bumps or blemishes.
Today was a good day. We had lunch, and Barry ate probably 95% of his meal, so that's an accomplishment in itself. Yesterday he was feeling under the weather, but we think that was down to eating and things not sitting well with him. I was like a mother hen, constantly asking how he was, paranoid that it was something more than what it was. I didn't like that feeling, and I have to try to relax and not panic lol. Not so easy for me!
The stories that I have come in about fond, funny, silly stories about Barry are great. Send more! lol. I will make a special post when I have more. So Steve, Dot, AJ, to call out a few people, send in your stories!
Had a lovely message on face book from the lovely Steve Walker! Looks like he is planning a trip from Australia to the Great White North! You should have seen Barry's face light up at the mention of that! When Steve told him he was beaming and he looked like a child on Christmas morning. So the plans are in the works and Barry, again, has something to look forward to! Steve, you are the best brother and brother in law EVER! Honestly, you have been a rock for Barry, and don't tell him I am blabbing this to everyone, but the one thing he said when a time limit was placed on his live was that he wanted to see you, no matter what the timeline was. And he said this while crying. You are the best. He would have never have asked you to come, so it means so much that you want to come and see him. xxxx
Daniel was sad today because it was not a school day lol. Funny boy :) He goes for a full day on Tuesday, so we shall see what he thinks after being left all day at school lol. I think he will have so much fun he won't even miss us until we're back to collect him at the end of the day! haha
We are having a yard sale tomorrow, so I am going to end this quickly so I can get enough sleep to be up and alert first thing in the morning! Lots of work to get it all out and set up.
Oh... I think tonight Barry looks a little pink. So perhaps he does have a side effect, now that I think of it. They said he may get a pinkish flush to his skin. His neck looks pink, like he is warm.
On that note, I will leave you with Aeorsmith below!
Lots of love and hugs xxxx
Thursday, September 3, 2009
Another Mini Update....
Now that I am feeling better, and I let out all the negativity, I feel better for the time being. Daniel and Barry returned and immediately felt better for having the hustle and bustle of two men in the house! Talk about emotional roller coaster. It was a tough few hours, and now I feel back on course for the time being. There is one more trip to the hospital for Radiation. Barry has made it through this leg of the battle and he didn't get sick or any headaches, thus far! I am proud of him for finishing this. The secretary called me back and the chemotherapy was successfully moved from September 11th to the following Monday, the 14th. Please keep Barry in your thoughts that day and visualize the cancer getting smashed to smithereens by the chemo! :)
Today is the day Daniel has been waiting for since he knew what school was! He got to go to school and meet his teacher, and see his classroom. He loved it, to say the least. He was polite, articulate, a good listener and he played well with one of the 2 girls that was there, Helen. The other girl was quite shy and stayed with her mother most of the time. He did a puzzle made of numbers 0-9 and told the teacher (Mrs. Manford going forward to be known as Mrs. M) each number and colour and order of the numbers when asked. She then said she was going to have Daniel teach the class and she would put her feet up lol. It was a proud moment for Barry and I! Then he found a clock and moved the hands and told us it was 6 o'clock, and it was! I didn't even know he could tell time lol. This boy is a genius! He loved seeing all the toys and played nicely when the teacher was talking to the parents. When it was time to go, the poor boy cried his heart out! Mrs. M said she had never seen a child cry when it was time to leave, only when they were dropped off! Lol Daniel goes back this coming Tuesday for an entire day without Barry and I. I can't believe he is growing up!! Then, on the 17th he starts going every Tuesday, Thursday and alternate Fridays. We are so proud of our little man! He is growing up before our eyes!
It was definitely a day of ups and downs, but now its on the up. We are going to settle in and watch some television and then go to bed.
Thanks for reading our blog. The numbers are growing every day, and Barry loves hearing how high the numbers go!
Please don't forget to send your cards, if you haven't already! My goal is 50, so lets keep them coming!
Lots of love to you all xxxx
Today is the day Daniel has been waiting for since he knew what school was! He got to go to school and meet his teacher, and see his classroom. He loved it, to say the least. He was polite, articulate, a good listener and he played well with one of the 2 girls that was there, Helen. The other girl was quite shy and stayed with her mother most of the time. He did a puzzle made of numbers 0-9 and told the teacher (Mrs. Manford going forward to be known as Mrs. M) each number and colour and order of the numbers when asked. She then said she was going to have Daniel teach the class and she would put her feet up lol. It was a proud moment for Barry and I! Then he found a clock and moved the hands and told us it was 6 o'clock, and it was! I didn't even know he could tell time lol. This boy is a genius! He loved seeing all the toys and played nicely when the teacher was talking to the parents. When it was time to go, the poor boy cried his heart out! Mrs. M said she had never seen a child cry when it was time to leave, only when they were dropped off! Lol Daniel goes back this coming Tuesday for an entire day without Barry and I. I can't believe he is growing up!! Then, on the 17th he starts going every Tuesday, Thursday and alternate Fridays. We are so proud of our little man! He is growing up before our eyes!
It was definitely a day of ups and downs, but now its on the up. We are going to settle in and watch some television and then go to bed.
Thanks for reading our blog. The numbers are growing every day, and Barry loves hearing how high the numbers go!
Please don't forget to send your cards, if you haven't already! My goal is 50, so lets keep them coming!
Lots of love to you all xxxx
An Emotional Sara....
Today I have another 2 hours to myself. My aunt, AJ, and my sister, Samantha, have taken Barry to his 4th radiation appointment. I am glad to have the few hours to myself, but freedom is a little too much. With no one here, and I don't want to talk on the phone today, I am sitting here alone. I find alone the worst possible place, especially in the car, when there is nothing to do.
Last night I had weird dreams. We were in South Africa, in a not so nice area, and I was searching, and having to do hard things in poor conditions, with men who were laughing because it was as if I was fighting an impossible battle. I woke up angry and didn't make the connection until this afternoon when bits and pieces of my dream drifted back to my mind.
I am just feeling down and a bit sorry for myself today. The oncologists secretary called today to make the appointment for the start of Barry's chemotherapy. It was originally scheduled for September 11th, but as that is Barry's birthday, we had them change it and now it is the following Monday.
Radiation, Chemo, its all becoming so real. I have to say I am scared senseless. Barry and I have been together 12 years, married for 11, and I can't imagine my life without him. I don't want to. But I am also realistic. And the realness makes me angry. THIS IS NOT FAIR. I have heard all my life that life is not fair. Well, its just not. I actually prayed to god today and said to him that I know I have made mistakes, and Barry has made mistakes, but Daniel hasn't. If for no other reason, please keep Barry around for a long time for Daniel's sake. He doesn't deserved to live without his Daddy. I can explain Barry's operation, I can explain his knee hurting, I can even explain the hair falling out and the side effects of chemotherapy. But how am I supposed to explain to him that his Daddy might not make it? He is not even four and it breaks my heart. Daniel is much to me, everything to me, and his little heart will break if Barry doesn't beat this.
I can be told a million times to stay positive and thing the best and everything else, but sometimes the mind can't be controlled. Sometimes it drifts to future. Daniel is so innocent, so caring, and such a smart and loving boy. How will this change him? All the moms and dads out there know what its like. We want to protect our babies. I don't want him to hurt. My mom died when I was 11 and that was hard enough. Daniel is so young......
We went to his school today and met his teacher and saw his classroom and met 2 little girls that will be in his class. This is a huge change for Daniel, he is so excited about school. This is what he should be doing, not worrying about his Daddy. I don't want his spark to fade....
Sorry if this upsets some of you. I started to write this blog to keep everyone connected and up to speed on Barry's battle. At times this becomes therapeutic, and an release. I don't want to sob on and on to people, that's not what I am like. I like to at least appear to be strong!! I just never felt this sad before.
I guess a side effect of losing my mom, and being a kid, I never really looked into the future. I never planned my wedding in my mind, never dreamed of marrying and having children. Barry changed that in me. He has made me so happy over the years. In 2004 he gave me a picture that says soul mates in Chinese. We really are the essence of soul mates. I am so much a part of him. I have grown so much because of him, I know what love is, I know what happiness is, I know what living is. He is everything to me. I know I will be lost without him here. This can't happen. We are so in synch. We know each other's thoughts, finish sentences, say the same thing at the same time, laugh at the same silly things. We saw a commercial on TV the about a month ago and we both laughed until we had tears. We explained this to someone, and we didn't even get a smile out of them.
I know Barry has plenty of time left, lots more to see and do. I am trying to stay focused on that. Please help me to stay positive.
Maybe everyone who reads this, and knows Barry can send me their fondest, funniest, or best memory of Barry. I could put them all in the blog. My email again is threebears1959@yahoo.ca
I need to stay positive, even on the bad days, or even bad hours. I was doing ok today until I was alone. I almost feel silly now for writing all this, but I won't delete it.
I have stopped crying, remember Barry's laughter. He actually got mad at me because we couldn't stop and he had just had his operation not long ago and it started to hurt him to laugh, but neither of us could.
I also remember the moment I knew I loved Barry 100%. We were in the car, driving along the Queen Elizabeth Way, and there is a pond on one side with Lily pads and flowers. Barry pointed it out and said how nice it was, and I knew that with what we had been through that far, and knowing he appreciated things like that, that I loved him. Seems like a silly time to know, but I remember that is when it happened for me. A few months later we were living together, and few months after that we were engaged for about a week and then married.
What a roller coaster blog entry this has been! Kind of like a conversation with myself. But now I am smiling, remembering why this hurts so much.
Its because I love Barry, with every piece of my heart.
xxxx
Last night I had weird dreams. We were in South Africa, in a not so nice area, and I was searching, and having to do hard things in poor conditions, with men who were laughing because it was as if I was fighting an impossible battle. I woke up angry and didn't make the connection until this afternoon when bits and pieces of my dream drifted back to my mind.
I am just feeling down and a bit sorry for myself today. The oncologists secretary called today to make the appointment for the start of Barry's chemotherapy. It was originally scheduled for September 11th, but as that is Barry's birthday, we had them change it and now it is the following Monday.
Radiation, Chemo, its all becoming so real. I have to say I am scared senseless. Barry and I have been together 12 years, married for 11, and I can't imagine my life without him. I don't want to. But I am also realistic. And the realness makes me angry. THIS IS NOT FAIR. I have heard all my life that life is not fair. Well, its just not. I actually prayed to god today and said to him that I know I have made mistakes, and Barry has made mistakes, but Daniel hasn't. If for no other reason, please keep Barry around for a long time for Daniel's sake. He doesn't deserved to live without his Daddy. I can explain Barry's operation, I can explain his knee hurting, I can even explain the hair falling out and the side effects of chemotherapy. But how am I supposed to explain to him that his Daddy might not make it? He is not even four and it breaks my heart. Daniel is much to me, everything to me, and his little heart will break if Barry doesn't beat this.
I can be told a million times to stay positive and thing the best and everything else, but sometimes the mind can't be controlled. Sometimes it drifts to future. Daniel is so innocent, so caring, and such a smart and loving boy. How will this change him? All the moms and dads out there know what its like. We want to protect our babies. I don't want him to hurt. My mom died when I was 11 and that was hard enough. Daniel is so young......
We went to his school today and met his teacher and saw his classroom and met 2 little girls that will be in his class. This is a huge change for Daniel, he is so excited about school. This is what he should be doing, not worrying about his Daddy. I don't want his spark to fade....
Sorry if this upsets some of you. I started to write this blog to keep everyone connected and up to speed on Barry's battle. At times this becomes therapeutic, and an release. I don't want to sob on and on to people, that's not what I am like. I like to at least appear to be strong!! I just never felt this sad before.
I guess a side effect of losing my mom, and being a kid, I never really looked into the future. I never planned my wedding in my mind, never dreamed of marrying and having children. Barry changed that in me. He has made me so happy over the years. In 2004 he gave me a picture that says soul mates in Chinese. We really are the essence of soul mates. I am so much a part of him. I have grown so much because of him, I know what love is, I know what happiness is, I know what living is. He is everything to me. I know I will be lost without him here. This can't happen. We are so in synch. We know each other's thoughts, finish sentences, say the same thing at the same time, laugh at the same silly things. We saw a commercial on TV the about a month ago and we both laughed until we had tears. We explained this to someone, and we didn't even get a smile out of them.
I know Barry has plenty of time left, lots more to see and do. I am trying to stay focused on that. Please help me to stay positive.
Maybe everyone who reads this, and knows Barry can send me their fondest, funniest, or best memory of Barry. I could put them all in the blog. My email again is threebears1959@yahoo.ca
I need to stay positive, even on the bad days, or even bad hours. I was doing ok today until I was alone. I almost feel silly now for writing all this, but I won't delete it.
I have stopped crying, remember Barry's laughter. He actually got mad at me because we couldn't stop and he had just had his operation not long ago and it started to hurt him to laugh, but neither of us could.
I also remember the moment I knew I loved Barry 100%. We were in the car, driving along the Queen Elizabeth Way, and there is a pond on one side with Lily pads and flowers. Barry pointed it out and said how nice it was, and I knew that with what we had been through that far, and knowing he appreciated things like that, that I loved him. Seems like a silly time to know, but I remember that is when it happened for me. A few months later we were living together, and few months after that we were engaged for about a week and then married.
What a roller coaster blog entry this has been! Kind of like a conversation with myself. But now I am smiling, remembering why this hurts so much.
Its because I love Barry, with every piece of my heart.
xxxx
Wednesday, September 2, 2009
Highlights of the Reunion
Here are 4 pictures from when we met with Craig and Wendie. Thanks to Wendie for bringing a camera with Batteries that actually didn't die! Silly me :)
Enjoy :)
This one is Barry, Daniel and Craig leaning on our car, Pepsi. We were worried that we wouldn't fit Daniel and Craig in the same picture because Craig is 6'5" and Daniel is only 43" tall!
I LOVE this picture. Craig is actually smiling slightly, and Daniel just loves his big brother now! It was a sweet moment!
I LOVE this picture. Craig is actually smiling slightly, and Daniel just loves his big brother now! It was a sweet moment!
Barry and I at the restaraunt. Probably one of the few pictures you will see of me on here lol. I really don't like having my picture taken....
Wendie and Craig, mother and son :)
Monday, August 31, 2009
Blue Haze
Today's entry is going to be a long one! Go and get a drink, a snack, turn on some good music, and make sure your sitting in your comfy chair :)
I will start with today and work backwards.... sorry it has been so long!
Barry's first radiation appointment was yesterday, and his second was today. We were just getting ready to leave yesterday and AJ and Samantha (my aunt and sister) arrived. So they decided to take Barry to his appointment for me. What a nice and welcomed surprise, especially when Daniel said he wanted to go with them and then he did! I had 2 glorious hours to myself, which I spent talking to my wonderful friend Nykki in England, and then to my great friend Kristine. So basically I did nothing, and I loved every minute of it lol. Not that I don't love Barry and Daniel, however it was nice to just relax and to have zero responsibilities!! So thank you do AJ and Samantha!
Barry said the treatment was painless, and he had no side effects as of yet. They said he might experience nausea and headaches, but neither has presented itself. They have said that he will lose his hair, most likely within a few weeks. It is still all in tact so far :)
Barry was taken into the treatment room which had a big machine (hopefully I will have pictures to follow soon) which rotates around his head to radiate in the correct places of Barry's brain. They lie Barry down, position him correctly and tell him not to move. They put a strap over his head to remind him not to move because everything is very precise. Then everyone but Barry leaves the room and the machine starts. It turns to one side of his head, lasts about a minute (during which Barry sees things with a blue haze) then it stops, his vision clears, and it rotates to the other side and repeats the process, along with the blue vision. He described it as wearing blue tinted sunglasses and as soon as the machine stops, his vision returns to normal. That, along with the noise from the machine, are the only indicators that there is actually something happening. So after the minute on each side, he is done. It's that simple and he is free to leave. Setting the machine up in the correct place actually takes longer than the zapping itself!
Barry is also glad that he is in an express group and he has to register at the front desk, then let the girls in the radiation department know he is there, and then wait to be called, which was before he even had a chance to sit down! No long queues, or waiting, or signing this, answering that questions, etc. Daniel and I went with him today and Daniel thought the big machine was quite impressive but a little loud. He really doesn't like loud noises and had to cover his ears today. Funny little man!
We saw the radiation doctor today and he has given Barry a timetable to ween himself off of the dexamethasone (which is the drug used to reduce swelling in the lesions on the brain). Currently Barry is taking 4 of the 4mg tablets per day. On September 5th, he is to start taking 1 of the 4mg tablets two times a day. Then on September 8th, he is to take 1/2 of a tablet twice a day. On September 11th (Barry's birthday) he goes down to 1/2 a tablet once daily and on September 14th he stops the tablets completely.
The swelling that Barry did have once these lesions were discovered was very minimal and with the dexamethasone and the radiation, swelling should not exist by September 14th. Which is great!
Our question to the doctor today was when would they know if this has worked. This doctor (which I will remind you I am not fond of) said that this will be discussed with the oncologist once the treatment is completed. Charming, eh? I am glad I wasn't there (I knew to keep my distance and evening seeing him made me angry and unsettled) or I might not have held back my response to his answer. That being said, we hopefully shouldn't have to see him again, and if Barry needs to see a radiologist again, we will ask for someone other that him.
Our door has been revolving as of late, and I can see it continuing for some time! We have nurses, physiotherapists, dieticians, social workers, and family in and out! There is someone here every day, sometimes 2 or 3 different people a day. We love the visits from friends and family, but the professional visits are tough. I hate that our apartment isn't clean enough or tidy enough and Daniel loves to run around in just his underpants and a t-shirtand sometimes he doesn't like them visiting and he doesn't have a problem letting them know that. Its just stressfull from my perspective. Tomorrow we have the social worker and the nurse visiting. Thursday its the physiotherapist again, a trip to Daniel's school, and then radiation. Next week will be a little more quiet as Barry is done with the radiation on Friday.
Sunday, as you know, we went to Buffalo to meet with Barry's first wife and son, Wendie and Craig. There was a gap since they last saw each other, and it was time. As Dot said, who is Wendie's mum, it was long over due, regardless of Barry's health. And I think, if I can speak for all of us, it went well. Craig is so handsome, and polite, and lovely, Wendie has done a great job raising such a great son! He is now 21 and planning to join the Marines in the new year. Barry is so proud of him, he really is. What happened in the past is just that ,the past and we all came together to reconnect and start fresh. It made me happy, and I know Wendie was pleased, to see Craig and Barry together. Once Wendie recovers from her super long drive, she will send me some pictures and I will post some here.
We drove to Buffalo, with Daniel as well, and met them at their motel where we just talked together. What a wondeful sight to see everyone talking and laughing together, no fighting, no bad feelings, just being together. Daniel was not so sure of Craig before we arrived. You see, he had asked us a few weeks ago for a little sister, and then we tell him he has a big brother. He was not pleased lol. I told him to wait and meet Craig and then we could decide if we liked him. Well, Craig gave him a little football and played catch with him and taught him how to throw. Needless to day, Daniel loves him and was even referring to him as his brother! He was asking questions, saying, "why is my brother not drinking his water?", "why is my brother this, why is my brother that?". It was very sweet and I loved that he just accepted Craig as his brother once they met. We had a nice lunch and then went back to the motel for more talking and we called Dot, Wendie's mum, in England. It was nice for me to put a voice to the face and the kind words she has sent to us, and all the lovely things she has done. Barry said she sounded the same as he remembered and that it was great to talk to her again. He has always been fond of her, and its nice to reconnect again. He really enjoyed it and it brought back many great memories of laughter and fun!
I hope that we can see Wendie and Craig again, and we are planning a visit at Christmas, before Craig joins the Marines. Wendie said that the Marines fly parents to North Carolina once they graduate after 13 weeks, so Barry has that to look forward to. That meant a lot that she would want him there to share in that experience. Someone told me, and I can't remember who it was, that it is good for Barry to have goals, to set his sights in the future, to actually see things happening, so that he doesn't dwell on the cancer and become overwhelmed with pity and grief. So now we have Christmas to look forward to and then Craig's graduation, and then his birthday with Steve on their roadtrip! I, as Barry's wife and the one that sees his ups and downs, appreciate these "goals" that Barry looks forward to! It really does take his mind off of things for a time. I can't believe that he is looking forward to Christmas as much as he is. I think its not about the gifts, as Christmas can always feel, but about connecting, sharing, and laughing. Laughter is Barry's best medicine, and good friends and family mean more to him now. I hope that through all of this ordeal, and Barry's battle, that each and every one that reads this takes that sentiment from this. Life is short and precious, and savour it. Everything can change with the drop of a hat.
Barry has received 2 more cards since I last updated the blog.
1. June and Fred Rosenberg, from BC, Canada who are friends of Jenny, Karen's mum in Australia. Thank you for your prayers :)
2. Trish Zuppa from Buffalo, NY, also a friend of Jenny! Thank you so much, and we were just in Buffalo!!
Please keep the cards coming, and if you haven't sent one yet, you still have time to make it before his birthday! Barry is doubtfull that he will receive 50 cards with 50 pennies. Lets show him it can happen! xxx
I also wanted to say a thank you to Steve, Barry's brother. The phone calls are great. Please keep them coming. I know it can be hard, being so far, and Barry feels the same way. The phone calls bring you guys together and bridge the world. Barry seems to have a skip in his step after speaking with you. And Daniel loves to hear about the Australian animals. He can even spot OZ on a map of the world now!! xxxx
As I said above somewhere, Daniel is starting school soon. He goes Thursday to meet his teacher, Mrs. Manford and to see his classroom. Then the following Thursday he actually goes to school for the entire day! I think I will need a box of tissue that day! Then the following Tuesday he starts his regular schedule of Tuesdays, Thursdays and alternate Fridays for the entire day. Barry and I sit and talk about it and wonder where the time has gone! Nearly 4 on October 29th! He's not a baby, or a toddler, but a little boy now! A big boy, if you ask Daniel! We're so proud of him!!
Well, I think I have said more than my fair share! I haven't written in a few days just because of time! There never seems to be enough of it lol. Wonder why that is??? haha. So now that your bums are numb, I will end here.
All my love xxx
I will start with today and work backwards.... sorry it has been so long!
Barry's first radiation appointment was yesterday, and his second was today. We were just getting ready to leave yesterday and AJ and Samantha (my aunt and sister) arrived. So they decided to take Barry to his appointment for me. What a nice and welcomed surprise, especially when Daniel said he wanted to go with them and then he did! I had 2 glorious hours to myself, which I spent talking to my wonderful friend Nykki in England, and then to my great friend Kristine. So basically I did nothing, and I loved every minute of it lol. Not that I don't love Barry and Daniel, however it was nice to just relax and to have zero responsibilities!! So thank you do AJ and Samantha!
Barry said the treatment was painless, and he had no side effects as of yet. They said he might experience nausea and headaches, but neither has presented itself. They have said that he will lose his hair, most likely within a few weeks. It is still all in tact so far :)
Barry was taken into the treatment room which had a big machine (hopefully I will have pictures to follow soon) which rotates around his head to radiate in the correct places of Barry's brain. They lie Barry down, position him correctly and tell him not to move. They put a strap over his head to remind him not to move because everything is very precise. Then everyone but Barry leaves the room and the machine starts. It turns to one side of his head, lasts about a minute (during which Barry sees things with a blue haze) then it stops, his vision clears, and it rotates to the other side and repeats the process, along with the blue vision. He described it as wearing blue tinted sunglasses and as soon as the machine stops, his vision returns to normal. That, along with the noise from the machine, are the only indicators that there is actually something happening. So after the minute on each side, he is done. It's that simple and he is free to leave. Setting the machine up in the correct place actually takes longer than the zapping itself!
Barry is also glad that he is in an express group and he has to register at the front desk, then let the girls in the radiation department know he is there, and then wait to be called, which was before he even had a chance to sit down! No long queues, or waiting, or signing this, answering that questions, etc. Daniel and I went with him today and Daniel thought the big machine was quite impressive but a little loud. He really doesn't like loud noises and had to cover his ears today. Funny little man!
We saw the radiation doctor today and he has given Barry a timetable to ween himself off of the dexamethasone (which is the drug used to reduce swelling in the lesions on the brain). Currently Barry is taking 4 of the 4mg tablets per day. On September 5th, he is to start taking 1 of the 4mg tablets two times a day. Then on September 8th, he is to take 1/2 of a tablet twice a day. On September 11th (Barry's birthday) he goes down to 1/2 a tablet once daily and on September 14th he stops the tablets completely.
The swelling that Barry did have once these lesions were discovered was very minimal and with the dexamethasone and the radiation, swelling should not exist by September 14th. Which is great!
Our question to the doctor today was when would they know if this has worked. This doctor (which I will remind you I am not fond of) said that this will be discussed with the oncologist once the treatment is completed. Charming, eh? I am glad I wasn't there (I knew to keep my distance and evening seeing him made me angry and unsettled) or I might not have held back my response to his answer. That being said, we hopefully shouldn't have to see him again, and if Barry needs to see a radiologist again, we will ask for someone other that him.
Our door has been revolving as of late, and I can see it continuing for some time! We have nurses, physiotherapists, dieticians, social workers, and family in and out! There is someone here every day, sometimes 2 or 3 different people a day. We love the visits from friends and family, but the professional visits are tough. I hate that our apartment isn't clean enough or tidy enough and Daniel loves to run around in just his underpants and a t-shirtand sometimes he doesn't like them visiting and he doesn't have a problem letting them know that. Its just stressfull from my perspective. Tomorrow we have the social worker and the nurse visiting. Thursday its the physiotherapist again, a trip to Daniel's school, and then radiation. Next week will be a little more quiet as Barry is done with the radiation on Friday.
Sunday, as you know, we went to Buffalo to meet with Barry's first wife and son, Wendie and Craig. There was a gap since they last saw each other, and it was time. As Dot said, who is Wendie's mum, it was long over due, regardless of Barry's health. And I think, if I can speak for all of us, it went well. Craig is so handsome, and polite, and lovely, Wendie has done a great job raising such a great son! He is now 21 and planning to join the Marines in the new year. Barry is so proud of him, he really is. What happened in the past is just that ,the past and we all came together to reconnect and start fresh. It made me happy, and I know Wendie was pleased, to see Craig and Barry together. Once Wendie recovers from her super long drive, she will send me some pictures and I will post some here.
We drove to Buffalo, with Daniel as well, and met them at their motel where we just talked together. What a wondeful sight to see everyone talking and laughing together, no fighting, no bad feelings, just being together. Daniel was not so sure of Craig before we arrived. You see, he had asked us a few weeks ago for a little sister, and then we tell him he has a big brother. He was not pleased lol. I told him to wait and meet Craig and then we could decide if we liked him. Well, Craig gave him a little football and played catch with him and taught him how to throw. Needless to day, Daniel loves him and was even referring to him as his brother! He was asking questions, saying, "why is my brother not drinking his water?", "why is my brother this, why is my brother that?". It was very sweet and I loved that he just accepted Craig as his brother once they met. We had a nice lunch and then went back to the motel for more talking and we called Dot, Wendie's mum, in England. It was nice for me to put a voice to the face and the kind words she has sent to us, and all the lovely things she has done. Barry said she sounded the same as he remembered and that it was great to talk to her again. He has always been fond of her, and its nice to reconnect again. He really enjoyed it and it brought back many great memories of laughter and fun!
I hope that we can see Wendie and Craig again, and we are planning a visit at Christmas, before Craig joins the Marines. Wendie said that the Marines fly parents to North Carolina once they graduate after 13 weeks, so Barry has that to look forward to. That meant a lot that she would want him there to share in that experience. Someone told me, and I can't remember who it was, that it is good for Barry to have goals, to set his sights in the future, to actually see things happening, so that he doesn't dwell on the cancer and become overwhelmed with pity and grief. So now we have Christmas to look forward to and then Craig's graduation, and then his birthday with Steve on their roadtrip! I, as Barry's wife and the one that sees his ups and downs, appreciate these "goals" that Barry looks forward to! It really does take his mind off of things for a time. I can't believe that he is looking forward to Christmas as much as he is. I think its not about the gifts, as Christmas can always feel, but about connecting, sharing, and laughing. Laughter is Barry's best medicine, and good friends and family mean more to him now. I hope that through all of this ordeal, and Barry's battle, that each and every one that reads this takes that sentiment from this. Life is short and precious, and savour it. Everything can change with the drop of a hat.
Barry has received 2 more cards since I last updated the blog.
1. June and Fred Rosenberg, from BC, Canada who are friends of Jenny, Karen's mum in Australia. Thank you for your prayers :)
2. Trish Zuppa from Buffalo, NY, also a friend of Jenny! Thank you so much, and we were just in Buffalo!!
Please keep the cards coming, and if you haven't sent one yet, you still have time to make it before his birthday! Barry is doubtfull that he will receive 50 cards with 50 pennies. Lets show him it can happen! xxx
I also wanted to say a thank you to Steve, Barry's brother. The phone calls are great. Please keep them coming. I know it can be hard, being so far, and Barry feels the same way. The phone calls bring you guys together and bridge the world. Barry seems to have a skip in his step after speaking with you. And Daniel loves to hear about the Australian animals. He can even spot OZ on a map of the world now!! xxxx
As I said above somewhere, Daniel is starting school soon. He goes Thursday to meet his teacher, Mrs. Manford and to see his classroom. Then the following Thursday he actually goes to school for the entire day! I think I will need a box of tissue that day! Then the following Tuesday he starts his regular schedule of Tuesdays, Thursdays and alternate Fridays for the entire day. Barry and I sit and talk about it and wonder where the time has gone! Nearly 4 on October 29th! He's not a baby, or a toddler, but a little boy now! A big boy, if you ask Daniel! We're so proud of him!!
Well, I think I have said more than my fair share! I haven't written in a few days just because of time! There never seems to be enough of it lol. Wonder why that is??? haha. So now that your bums are numb, I will end here.
All my love xxx
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