I know, I know, its been a very long time since I have written an update. Things have been happening in warp speed, its hard to keep up! And then when the day is done, and Daniel is tucked into bed, I find myself so tired, that I am not far behind him. But here is the update, with loads of information!
Emotions have been all over the place in the last week or so, some days being great, some bad, and some good and bad. With the highs and lows has come a lot of information. Where to start??
I will start right in with the details of the hospital visit to the orthopedic surgeon, Dr. Armstrong.
Just before we left and headed out the door, there was a knock on our door and Barry's crutches were delivered. The order was put in around 4pm the day before, and before 9:30am the next morning they were here. Pretty great service, if I may say so. These were compliments of John the physio guy.
We dropped Daniel off with Bieke and headed over to the hospital, arriving just before 10am. We checked in and gave all of Barry's details to the nurse and then waited about 10 minutes, maximum before Barry was called to see the doctor. We weren't brought to a room, but to the viewing station in the hallway, so we could see pictures of Barry's scan on the monitors. It was really interesting, but quite startling to see the size of the cancer there. I would guess that its close to the size of a golf ball. That leaves about a fingers width of bone that is not affected by this cancer. This is the dangerous part because it could break at any time. Scary, because fixing a break is much harder, longer, and more painful for Barry than to strengthen the area before a break happens.
Basically, we were unable to make a decision because this orthopedic surgeon didn't know enough about the cancer side of things to make us feel comfortable enough to go ahead. And Guelph had no oncologists on call at all, so we felt iffy about making a choice then and there to go ahead with the operation. We were worried about the chemo only days ago, blood levels, infection, and just making such a quick decision that would have very lasting consequences.
We left the hospital thinking we would speak with the new oncologist in Hamilton that we met yesterday....
So we called Bieke, and asked if she wouldn't mind if we grabbed some breakfast (Barry hadn't had anything to eat in case he had to go ahead with the operation and he was feeling very ill at this point.) So off we went to Town and Country, a dive of a restaurant with great food here in Guelph.
So fast forward to this week and our appointment in Hamilton with Dr. Tozer, the new oncologist. The drive to Hamiton was good, with not a lot of traffic. I was worried the entire trip because we wouldn't be there to pick up Daniel from school. However, my aunt was there to pick him up and he had no worries that Mommy and Daddy weren't there. They had a nice time playing and they made a special pizza, and even when we rolled in very late, he wasn't upset that we had been gone that long. In fact, when I was talking to him tonight about picking him up from school tomorrow, he was upset that I was coming, but has agreed to let me come one day, and Grandma can come the next. We are to take turns, according to Daniel. lol. So thank you, AJ, for taking such great care of Daniel. We couldn't have made this LONG yet important trip without you!! And Friday is your day to pick up Daniel now lol.
So we got to the hospital, I dropped Barry off, parked and brought him a wheelchair. Once he was in, the security guard insisted that he wheel Barry for me, and brought us to the information desk. What I thought was really nice, while we waited for the information lady to be free, was in the waiting room, and in all the other waiting rooms we saw, there was a basket with yarn and knitting needles with a note. I am not sure what the note said, but I believe the yarn and needles were there for people to knit while they way, and then in turn make blankets out of what the patients make. What a lovely idea!! I can knit, and I was there by myself, bored, I could knit, relax, and help someone out at the same time. Brilliant!
So the info lady didn't just tell us where we had to go, but she had a volunteer take us to the correct clinic and she also gave us a pamphlet to familiarize us with the hospital. Great treatment! Until we started our wait for the doctor. We waited about 20 minutes in the waiting room, and then Barry was called. We thought that was great timing, and thought we would be in and out before rush hour traffic started. How wrong we were. We sat and waiting a total of 2 hours for the doctor. He walked in at 5:00 for our 3:00 appointment. After we told him we were not too impressed, we discovered that he is a great guy.
Let me spill the great news I have been sitting on this entire time I have been typing!! The chemotherapy is working on the cancer in Barry's body!!! He had a bump on his arm that was literally the size of a golf ball, near his shoulder. That has reduced in size by three quarters, if not more. There was a smaller bump on his chest, and that is nearly gone. There was a big lump on his back that I can't even find now!!! We told this to Dr. Tozer and he said that this was very rare, and amazing! I don't think he gave a percentage of the probability of this happening, but he said it almost never happens. Go Barry!! What a champ!!!
The only thing that isn't so great about this is that the chemo is only working on his body. The "mets" as the doctors call them, in his brain are not reached by the chemo. There is a blood barrier around the brain that protects the brain from the chemo drugs. So that leaves his fate, for now, with the radiation that he had. Dr. Tozer said that more radiation on the brain could cause dementia and Alzheimer's like symptoms. Not good.
So Dr. Tozer mentioned this other drug, that is almost identical to the chemo drugs that Barry has taken, except it is in a pill form and not taken through I.V. and (here is the good part) it passes through the blood barrier in the brain! The bad news (and its pretty bad) is that it costs $3000.00 to $5000.00 per month and the government (lovely government) does NOT cover it. Apparently there isn't enough supporting evidence that it is better than the chemo drugs. They haven't had enough successes to prove that it can save lives. Dr. Tozer said he will give me a name of a woman in the hospital that can help me try some avenues to get the government to pay for it, but it is not likely. So, my friends and family, I have now made it my mission to get Barry this drug. If he is one of the few (lucky number 7%) that is responding to the chemotherapy, then there is a great chance that he will respond to this new drug.
Dr. Tozer also talked about Barry's femur, the main concern right now for all doctors and us. The doctor is passing along Barry's scans and charts to a orthopedic oncologist, a bone doctor that specializes in cancer issues in the bone. She is basically going to look at everything and determine if this is something that would benefit from her speciality, or if any orthopedic surgeon could handle this. Once she gives it all a once over, they will be in contact and let us know who we should see about it and possibly her opinion of what we should do. So much to think about. The options we have heard so far are to put a ruler like metal thing down the good side of Barry's femur and to screw it into place, and then to radiate the cancer. The problem with this is that the radiation might not work, and if it does, we don't know what would happen with the "pocket" that would be left in the bone. The bone could kind of be like swiss cheese, not strong, filled with holes, and the femur would be weak. Then, it could either regrow, and become healthy, or it could be too damaged and it may not. The other option that has been discussed is to cut the femur above the cancer point, and the remove it, and then replace it with a donor femur. This option is obviously more invasive and would have a longer healing time for Barry. So basically, we aren't experts, and we aren't sure what the best choice would be. All we do know is that this is serious, and none of the doctors want the bone to break before something is done, because fixing the break is the least desirable option with the most pain and healing time for Barry.
Tomorrow we are going to see a new radiologist, Dr. Basiur. Hopefully he will provide us with some insight, and also be a little nicer and not as demeaning as the first radiologist. I sometimes feel I would be much better at this if I had a degree in medicine!
Our emotions are up and down, and Barry is more frustrated than ever that he can't get around on his own. He is scared to break his leg, and is therefore being extra cautious. He uses a walker in the apartment, crutches to and from the car, and now a wheelchair once we reach a destination. There is a bath bench to help in in and out of the tub, and to provide a seat while showering so he doesn't slip and fall. He even has a cane from his dad to get around the kitchen and bathroom a little easier and where the walker doesn't fit. And then he has me to drive him everywhere, and do the majority of what he needs, so his independence has basically been taken away. I know that its starting to get to him, and he is getting angry. He really has no outlet for that, and sometimes it comes my way because there is no one else here to take it. I feel bad for him, and wish I could do more. I just don't see how there are enough hours in a day to get it all done. I want to do so much more for him but I run out of time or stamina. I try my hardest to keep a smile but some times that doesn't happen. Barry is only 50. He was strong and independent and now that has all changed. I just keep reminding myself of how I would feel in his shoes. That seems to get me by for now.
Today I made a favourite treat of our for dinner. Its a chowder and it is delicious! I am going to include the recipe because its great for the fall weather because it warms you right up! Try it and let me know how you like it!!
Sar's Hearty Bacon Potato Chowder
8 slices of bacon cut into 1 inch pieces
2 cups of cubed red potatoes, skin on (I even use regular potatoes and its just as good, just not as much color)
1 cup chopped onion
1 cup sour cream
1 1/4 cup milk
1 can of condensed cream of chicken soup
1 can of whole kernel corn, drained
1/4 teaspoon pepper
1/4 teaspoon thyme leaves
In a big pot, cook bacon over medium heat for 5 minutes. Then add potatoes and onions. Continue cooking, stirring occasionally until potatoes are tender (15-20 minutes). Add remaining ingredients. Continue cooking for another 10-15 minutes to heated all the way through.
I usually add more potato and onion, (an extra half of the suggested amount) and sometimes more corn, which makes it more like a meal. You really can't mess this up. Also, if I have no thyme, I use an Italian mix of spices, or oregano, just a little less if just using oregano.
Its late, I am sleepy, and Daniel has school tomorrow and I've not made his lunch for tomorrow! Speaking of school, Daniel is selling chocolate covered almonds and cashews as a fundraiser for his school. Anyone interested in buying a box (or two) email me. They are $3.00 per box and yummy :)
I hope I have covered most things..... I know there are more, but that can wait until tomorrow.
Lots of love to you all xxx
Wednesday, September 23, 2009
Another Guest Writer :)
This is something that my dear friend Nykki wrote for us. As a warning, it made both Barry and I tear up!
Thanks so much Nyk... its just beautiful and you are very talented! Lots of love to you all, across the pond xxx
For Barry, Sara, Daniel, Craig, Ma and Pa Walker, Steve and the all of the Walker family and friends….
I cannot try to understand it
And I don’t know what to say,
The tears that have fallen
Have been the only way.
I may be a thousand miles away
But my mind is there with you,
Each and every step you take
I am a shadow there too.
Your strength is unbreakable,
Your family, a beautiful sight!
Such a powerful reminder
Of why you continue to fight.
I don’t know where this path will go
But I know you will have run every mile,
And know you will continue to do so
Always trying to crack a smile.
For you, my friends, are amazing!
Everyone needs people like you.
And all your friends a family
Relish your confidence too.
As your fight continues across the pond,
Remember your support over here;
In mind and spirit we’re fighting for you too
Our hearts ready to comfort your fear.
Our prayers for you continue
As we think of you everyday:
Barry The Bear, be sturdy and tough
For good news is surely on the way.
Much love from the UK
Nyk, Steve, Lawrie and Georgina xxxxx
I will be updating the blog today, come hell or high water! I know its been days, and I have loads to write about, some good, some not so good that we will make good, and some great. So please stay tuned for that some time today.
And once again, if you want to write something for our blog, simply email it to threebears1959@yahoo.ca and I will gladly post it up for all to see. Its a nice addition to the blog, I think. So get writing, and email it to me!!
Lots of love, and until later today xxxxx
Thanks so much Nyk... its just beautiful and you are very talented! Lots of love to you all, across the pond xxx
For Barry, Sara, Daniel, Craig, Ma and Pa Walker, Steve and the all of the Walker family and friends….
I cannot try to understand it
And I don’t know what to say,
The tears that have fallen
Have been the only way.
I may be a thousand miles away
But my mind is there with you,
Each and every step you take
I am a shadow there too.
Your strength is unbreakable,
Your family, a beautiful sight!
Such a powerful reminder
Of why you continue to fight.
I don’t know where this path will go
But I know you will have run every mile,
And know you will continue to do so
Always trying to crack a smile.
For you, my friends, are amazing!
Everyone needs people like you.
And all your friends a family
Relish your confidence too.
As your fight continues across the pond,
Remember your support over here;
In mind and spirit we’re fighting for you too
Our hearts ready to comfort your fear.
Our prayers for you continue
As we think of you everyday:
Barry The Bear, be sturdy and tough
For good news is surely on the way.
Much love from the UK
Nyk, Steve, Lawrie and Georgina xxxxx
I will be updating the blog today, come hell or high water! I know its been days, and I have loads to write about, some good, some not so good that we will make good, and some great. So please stay tuned for that some time today.
And once again, if you want to write something for our blog, simply email it to threebears1959@yahoo.ca and I will gladly post it up for all to see. Its a nice addition to the blog, I think. So get writing, and email it to me!!
Lots of love, and until later today xxxxx
Friday, September 18, 2009
Another Hiccup
What started off as a fairly good day quickly turned into another tearful day.
Barry was feeling relatively well, apart from having the hiccups all night and not sleeping well at all. The nausea had lessened from yesterday, and he was not quite as tired. A real trouper, he is! We even decided to go out for a bit of lunch to, you guessed it, Swiss Chalet. Barry was able to eat most of his meal, Daniel was very well behaved, and apart from Barry's bum feeling very bony on the chair, all was good.
We got home and there was a message on our machine from a doctor, whom I can't remember her name, that was filling in for the day for Barry's oncologist, Dr. Knight. I rang her back and was hit hard with some tough news to hear. Barry had a scan on his knee yesterday because he hurt it when he was still at work. He had had a scan about a month ago and nothing showed up, so John the physio guy has been treating it as a soft tissue injury. Well, Barry had another scan yesterday, just to check up on it, and it was revealed that there is cancer in his femur. If that wasn't enough, we were told that Barry cannot walk on it for fear it could break. The femur gets quite narrow at the bottom, above the knee. We do not know the actual size of the cancer there, but it does go across the entire width of the femur at the bottom. This has weakened the bone, and even a minor stumble, or putting his foot down too hard could cause the bone to fracture or break. So no walking. We tried to get the Community Care Access Centre people to get him some crutches, through John the physio guy, but apparently it was too late. Hopefully they will arrive some time tomorrow.
So with this high risk for a break or fracture, Barry has been told to go to the Emergency Room at our hospital tomorrow at 10 am and meet with an orthopedic surgeon. He will meet us there and review the scan from yesterday more closely and decide from there what to do. The doctor I spoke with today said there are two options that she knew of. One, cast Barry's leg to immobilize it, then radiate the area to shrink the mass. This is a bit risky because radiation doesn't work immediately so the chance of breaking or fracturing the femur is still there, although lessened. Two, operate and insert a rod into Barry's knee as a preemptive surgery to eliminate the risk of the break. We are not sure if radiation would occur afterwards, because I was too much in shock to think of all the right questions to ask. Tomorrow we will ask that. Also, with the operation, the doctors would have to take into consideration that Barry just had chemotherapy on Monday, and therefore his white blood cells (which fight infection) and red blood cells (oxygen carriers and also bacteria fighters) could be low, perhaps even too low for an operation.
Basically we were hit hard with this, and Barry is finding it hard to keep his thoughts positive. We had a huge cry today after hearing the news. I knelt in front of him and just hugged him while he cried, and while I cried. It was a bit harder to stop this time. And it broke my heart when Daniel asked why we were crying, and then asked why we didn't stop crying. I am finding it so hard to have my emotions, yet shelter and protect him from this. I couldn't stop crying, and crying is a great outlet, but I know Daniel equates crying with sadness, and therefore becomes quite upset knowing we are sad. It is a hard balancing act to perform, and I feel tremendous guilt for failing day after day. We have a woman from Hospice coming to chat and play with Daniel, to talk with him about cancer, and what we are all going through. She seemed very informed and capable, so I am hoping this fills some of the gaps we have left open. She comes Wednesday this week coming, and I feel it can't be soon enough. I know he is a smart, strong, capable boy, but he is still only 3, and this ordeal will have a lasting effect on him regardless. I just want him to come out of this with the happiness he has now, and to grow with a healthy outlook on life. His innocence and love of all things makes him a pretty special boy, and I don't want this to take that away from him... DAMMIT this isn't fair. This disease is a beast and I HATE it. There is no break from it, there is no peace with it, and there is no reason for it.
I was a mess calling Barry's parents, no help to them. I often fear I am making it worse, being such an emotional messenger. I am sorry I can't make this easier for them. This is their son, no matter how old, and I can't even imagine what they themselves are going through.
Our call from Steve was emotional and sad and beautiful all at the same time. I am not sure what was said, and I don't think we need to know, but I do know they shared some lovely words and a heartfelt cry. These brothers are halfway around the world from each other, but their closeness tonight was evident. Barry couldn't speak, handed me the phone, and I could see Barry sobbing, and I could hear Steve was in the same state, and I felt so much love from them both for the other. I could barely speak. Steve, you are wonderful, and so are you Mom and Dad. I am so lucky to be on Team Walker, and to be a part of such a lovely, wonderful family.
Wendie, once again you are the surprise rock for me. Who would have thought we would be so close? You are a true friend, something I never thought would happen. Thank you for everything you have done, and being there to listen to me cry. I know its not an easy job, but you always know what to say, when to say it, and when to just listen. No wonder your son turned out to be so great. xxxxx
Bieke, you didn't hesitate today when I asked you to watch Daniel tomorrow. You make me feel strong and loved and mush! I love you for all of that, and for how you respect and love Daniel.
My aunt Kim showed up for a surprise visit today. I found it odd, as she has never done that before, just turned up. They say everything happens for a reason, and I believe that. Her visit was just what we needed! She basically said the news was terrible, but you have to fight on! Then the rest of the visit was just normal, if that is possible! The tension and sadness and self pity Barry and both felt was lifted and we were able to put on our game faces again. We couldn't have got through with out her visit and that distraction. Whoever sent her to us today, thank you!
I am going to cuddle with Barry. I think we both need it tonight.
Thank you for all the support on face book and phone calls from those I haven't mentioned. We appreciated every word and call and love. We are blessed and this cancer won't beat Barry. He will beat this cancer!
Lots of love to you all xxxxxxx
P.S. here is a picture of Barry, without his hair xxx
Wednesday, September 16, 2009
A Message from a Guest Writer :)
I have opened up our blog to Stan Walker, Barry's dad, and I open it up to anyone else who wants to write something for everyone to read. I would like to preface this entry by saying I am not responsible for the nature of the content, and I have not edited this in any capacity. Any and all comments should be directed to the author, to whom I love dearly but do not wish to encourage. ;)
To every one of you out in the sticks many of who we ( Ma and Pa Walker) have never met, may we express our most sincere and heart felt thanks for the magnificent responses that you have given to our family in this moment of dire need. Carry on the good work please do, as we need a lot more pennies before we can go on our world cruise in celebration of the recovery of Barry and his fight against you all know what.
Having said that, I do find it difficult to get Sara to part with one penny, especially when I have given her the best thoughts of my life, and believe me I have many to share. At my age all one has left are thoughts, if only I could remember them !!!!
As this is the first communication from me, you must wonder what I look like. If I told you 6ft with fair curly hair and blue eyes and abs that make a swoon fest easy, then you would all be right. However I cannot prove this as I have been sworn to secrecy by my lawyer, as my case does not come to court before Christmas, and the Police Gazette ( Sept edition )has only mug shots of me. So you will have to trust me.
I must close now, as there are several men wearing white jackets pounding at the door, I guess I shall have to let them in. Bye for now, OK OK I'm coming, some people are so impatient.....
Pa W
Anyone else wanting to share something with everyone, don't be shy! Its nice to have a little break and hear other's thoughts. My email is threebears1959@yahoo.ca. I will cut and paste what you write on here and let everyone know who it is from. Not everyone can read the comments posted by others (although I don't miss any of them and appreciate them) so if you want to share, please do!
Lots of love xxxx
To every one of you out in the sticks many of who we ( Ma and Pa Walker) have never met, may we express our most sincere and heart felt thanks for the magnificent responses that you have given to our family in this moment of dire need. Carry on the good work please do, as we need a lot more pennies before we can go on our world cruise in celebration of the recovery of Barry and his fight against you all know what.
Having said that, I do find it difficult to get Sara to part with one penny, especially when I have given her the best thoughts of my life, and believe me I have many to share. At my age all one has left are thoughts, if only I could remember them !!!!
As this is the first communication from me, you must wonder what I look like. If I told you 6ft with fair curly hair and blue eyes and abs that make a swoon fest easy, then you would all be right. However I cannot prove this as I have been sworn to secrecy by my lawyer, as my case does not come to court before Christmas, and the Police Gazette ( Sept edition )has only mug shots of me. So you will have to trust me.
I must close now, as there are several men wearing white jackets pounding at the door, I guess I shall have to let them in. Bye for now, OK OK I'm coming, some people are so impatient.....
Pa W
Anyone else wanting to share something with everyone, don't be shy! Its nice to have a little break and hear other's thoughts. My email is threebears1959@yahoo.ca. I will cut and paste what you write on here and let everyone know who it is from. Not everyone can read the comments posted by others (although I don't miss any of them and appreciate them) so if you want to share, please do!
Lots of love xxxx
Tuesday, September 15, 2009
My New Husband
Today is the day that I have a new husband.
Barry's hair finally decided to fall out today. He has tugged on it every day to see if it was time, but today it finally slipped out easily with no resistance. Barry asked that I borrow clippers from Kristine and buzz his hair off and to buy a bandanna or something to cover up his possibly ugly head. He was feeling a little tired so I had my aunt and sister come round to play with Daniel and sent Barry to bed for a well needed and deserved nap while I popped out to collect what he needed.
I had a few other things to do, so I finished the errands with a trip to Tim Horton's for a coffee for Barry and some timbits for Daniel just after Barry woke up. My aunt and Samantha left, and we debated when to shave his head. We didn't want Daniel to think it was a bad thing and we definitely didn't want to shock him by not telling him before, so we decided to do it then and there. We got Daniel to help, and before we started he got a towel for Barry to wear around his shoulders, placed his favourite blanket on the chair, and got the teddy bear he bought Barry for his birthday in case Barry got scared. (I sure do love him...he is genuinely kind hearted and it melts me when he's so wonderful!) Then, standing tall, Daniel said, "Daniel's cut shop is open for business!". lol We got Barry settled, with towel on and bear in hand, and then together Daniel and I held the scissors and took the first cut together. Then I got the clippers out and started shaving. Daniel left because he doesn't like loud noises and then the mood, at least for me, changed. I felt so sad, shaving his head. Every step we take in this battle makes things more real. But I held back the tears and tried not to appear scared and so sad. I don't suppose Barry believed the laughter and light hearted comments. It was a weird time, both of us feeling a weight upon our shoulders, but pretending it wasn't there.
When we were done, Barry went to the mirror. I felt I should follow him and he took a quick look and ducked away as fast as he could. I saw the back of him and his shoulders were shaking and he turned to me, sobbing, and said he was sad, over and over. There we stood, in our tiny kitchen, hugging and crying. I couldn't say anything, except that I loved him, and it may sound corny, but it was as if time stood still and we just had that moment, being sad and scared together. Then Daniel came in and brought us back to reality. I asked Daniel how Daddy looked and he said funny and Barry laughed, and some how it all was ok.
I honestly think being bald is a good look for Barry. Who would have thought that someone with a full head of beautiful hair would suit no hair at all? I think, and this isn't just to be nice to Barry, that it takes years off of him, and he looks younger and more handsome! He is still Barry, but somehow different. I see his worry just a little bit more, but I don't look at him now and immediately think he is sick. If a stranger saw him on the street, I am sure they would just think he is a bald man.
So the deed is done, we are feeling a bit better, as if the weight was lifted back off our shoulders for the time being, but his hair is still on the counter and I can't bring myself to throw it away. Keeping it in a zipper bag seems a little creepy, but throwing it away seems insensitive not the right thing to do. I keep walking by it, and I am just not ready to throw what belongs to Barry in the garbage. I seriously don't know what goes through my mind since this all began and wonder if I am losing my mind. Rationally, it is nothing more than hair, no different from a regular haircut. Emotionally, its a piece of Barry that deserves more than a trash bin. As it is late, and I am questioning my sanity but still listening to my heart, it will stay there until tomorrow. Perhaps then I can make up my mind.
Yesterday Barry had his first chemo treatment. It was a VERY long day for us, and for Barry's parents, who watched Daniel for the day. (thank you so very much. We couldn't possibly have taken him and made it through the day without tears.) We arrived at the hospital at 10:15am and left at 4:45pm, a 7 hour day at the hospital, with about a 40 minute drive each way.
When we got there, we first met with the pharmacist, Terry, who was just wonderful. He explained each drug that Barry was going to get that day, and all the drugs he was to take afterwards for the following 3 days. He answered all our questions and then some and made us feel so much better about the chemotherapy and what to expect during and afterwards. Terry even made a calendar with each drug and what time to take it and colour coded the drugs and the calendar! Excellent for me, since there is always so much going on during the day, and I like schedules because it organizes me.
So after our chat with Terry, we were taken into this great big area called the chemotherapy suite. There were 3 big rooms and in each room there were beds and chairs for the patients while they were given their chemo drugs. Each big room was like an open ward, with curtains that could be drawn if more privacy was desired. But every single person had their curtain open. I think it was because there was more to watch. Some people were alone and had no one to talk to or nothing to do but lie and watch everyone else. Most people weren't alone, I was glad to see. Barry and I both agreed that there were too many people. There were at least 50 beds or chairs, and Barry's chemo treatment is the longest treatment there is, so people would come and go. It was one day and way too many people were injected with chemo drugs, and too many people suffering and battling cancer. It was sobering to see these fighters, battling for their lives.
After Barry was hooked up to an IV and given some saline to get things started, he was given some Benadryl because a lot of people develop allergy symptoms or a sensitivity to the drugs. That took about 30 minutes to run its course, and made Barry slightly drowsy. Then they added an anti-nausea drug called Metoclopramide which was about 20 minutes, and after that was gone he was given Zantac, which also acted as an anti-nausea drug. So with the pre-chemotherapy medicine out of the way, it was time for Paclitaxel, which had to be given slowly, and took 3 hours to empty the bag! This was the first of the actual chemo drugs. After that long stretch, Barry was given the Carboplatin, the final of the 2 chemo drugs. We were never so happy to be done something as we were when the last drop dripped out of the bag! Barry's nurse, who was just wonderful, removed the IV and sent us on our way. She was so kind, gentle and informative the entire day. We were the last ones to leave from Barry's section. We saw a lot of sick people, including one of the women next to Barry who had breast cancer. She was Spanish, and her daughter sat there and read the bible and prayed to her in Spanish. They both didn't cry, and they both had a calm about them. I don't know if it was her first or 50th treatment, but they just seemed so peaceful, even as the nurse injected a bright red toxic drug into her veins. Where do people get their strength? How do they stay so calm? I was once again humbled that day.
On the lighter side, Barry and I had a really good time together that day. It was almost like the cancer wasn't there when the nurses were gone and we were alone in our little section. We looked at pictures in a national geographic magazine, did crossword puzzles, talked, laughed, and ate some food, and drank some coffee (well, Barry drank the coffee.). It was nice to spend time together, basically doing nothing. It makes a nice change.
Barry never got sick that day. There was a chance he could have, but he didn't. When we left, the nurse said that he would most likely get sick when we got home or during the night. It never happened. Even today, when he should have been sick, he wasn't. He has taken all his drugs, relatively on time, and he has be great. He has felt slightly more tired than usually, but nothing major. He also felt light headed for a bit, but that didn't last. I am truly amazed at his stamina. Whatever keeps getting thrown at him, the takes it and throws it back out the window. He is amazingly strong, and I love him more for doing it with the "bring it on" attitude he embodies.
The nurse that came today was a little surprised that he is doing so well. That's Barry, defying all expectations, and that is exactly what is going to get him through this and what will make him the exception to the rule that melanoma can't be beat! I envision the cancer shrivelling up and disappearing within him. He will go on that road trip with his brother, stopping at all the Tim Horton's in Canada. He will watch Daniel grow up, and see Craig build his career in the Army, and will renew our wedding vows on our 25th anniversary! He will drive truck again, and we will grow old together. HE WILL BEAT THIS!
Barry will win his battle.
xxxxx
Barry's hair finally decided to fall out today. He has tugged on it every day to see if it was time, but today it finally slipped out easily with no resistance. Barry asked that I borrow clippers from Kristine and buzz his hair off and to buy a bandanna or something to cover up his possibly ugly head. He was feeling a little tired so I had my aunt and sister come round to play with Daniel and sent Barry to bed for a well needed and deserved nap while I popped out to collect what he needed.
I had a few other things to do, so I finished the errands with a trip to Tim Horton's for a coffee for Barry and some timbits for Daniel just after Barry woke up. My aunt and Samantha left, and we debated when to shave his head. We didn't want Daniel to think it was a bad thing and we definitely didn't want to shock him by not telling him before, so we decided to do it then and there. We got Daniel to help, and before we started he got a towel for Barry to wear around his shoulders, placed his favourite blanket on the chair, and got the teddy bear he bought Barry for his birthday in case Barry got scared. (I sure do love him...he is genuinely kind hearted and it melts me when he's so wonderful!) Then, standing tall, Daniel said, "Daniel's cut shop is open for business!". lol We got Barry settled, with towel on and bear in hand, and then together Daniel and I held the scissors and took the first cut together. Then I got the clippers out and started shaving. Daniel left because he doesn't like loud noises and then the mood, at least for me, changed. I felt so sad, shaving his head. Every step we take in this battle makes things more real. But I held back the tears and tried not to appear scared and so sad. I don't suppose Barry believed the laughter and light hearted comments. It was a weird time, both of us feeling a weight upon our shoulders, but pretending it wasn't there.
When we were done, Barry went to the mirror. I felt I should follow him and he took a quick look and ducked away as fast as he could. I saw the back of him and his shoulders were shaking and he turned to me, sobbing, and said he was sad, over and over. There we stood, in our tiny kitchen, hugging and crying. I couldn't say anything, except that I loved him, and it may sound corny, but it was as if time stood still and we just had that moment, being sad and scared together. Then Daniel came in and brought us back to reality. I asked Daniel how Daddy looked and he said funny and Barry laughed, and some how it all was ok.
I honestly think being bald is a good look for Barry. Who would have thought that someone with a full head of beautiful hair would suit no hair at all? I think, and this isn't just to be nice to Barry, that it takes years off of him, and he looks younger and more handsome! He is still Barry, but somehow different. I see his worry just a little bit more, but I don't look at him now and immediately think he is sick. If a stranger saw him on the street, I am sure they would just think he is a bald man.
So the deed is done, we are feeling a bit better, as if the weight was lifted back off our shoulders for the time being, but his hair is still on the counter and I can't bring myself to throw it away. Keeping it in a zipper bag seems a little creepy, but throwing it away seems insensitive not the right thing to do. I keep walking by it, and I am just not ready to throw what belongs to Barry in the garbage. I seriously don't know what goes through my mind since this all began and wonder if I am losing my mind. Rationally, it is nothing more than hair, no different from a regular haircut. Emotionally, its a piece of Barry that deserves more than a trash bin. As it is late, and I am questioning my sanity but still listening to my heart, it will stay there until tomorrow. Perhaps then I can make up my mind.
Yesterday Barry had his first chemo treatment. It was a VERY long day for us, and for Barry's parents, who watched Daniel for the day. (thank you so very much. We couldn't possibly have taken him and made it through the day without tears.) We arrived at the hospital at 10:15am and left at 4:45pm, a 7 hour day at the hospital, with about a 40 minute drive each way.
When we got there, we first met with the pharmacist, Terry, who was just wonderful. He explained each drug that Barry was going to get that day, and all the drugs he was to take afterwards for the following 3 days. He answered all our questions and then some and made us feel so much better about the chemotherapy and what to expect during and afterwards. Terry even made a calendar with each drug and what time to take it and colour coded the drugs and the calendar! Excellent for me, since there is always so much going on during the day, and I like schedules because it organizes me.
So after our chat with Terry, we were taken into this great big area called the chemotherapy suite. There were 3 big rooms and in each room there were beds and chairs for the patients while they were given their chemo drugs. Each big room was like an open ward, with curtains that could be drawn if more privacy was desired. But every single person had their curtain open. I think it was because there was more to watch. Some people were alone and had no one to talk to or nothing to do but lie and watch everyone else. Most people weren't alone, I was glad to see. Barry and I both agreed that there were too many people. There were at least 50 beds or chairs, and Barry's chemo treatment is the longest treatment there is, so people would come and go. It was one day and way too many people were injected with chemo drugs, and too many people suffering and battling cancer. It was sobering to see these fighters, battling for their lives.
After Barry was hooked up to an IV and given some saline to get things started, he was given some Benadryl because a lot of people develop allergy symptoms or a sensitivity to the drugs. That took about 30 minutes to run its course, and made Barry slightly drowsy. Then they added an anti-nausea drug called Metoclopramide which was about 20 minutes, and after that was gone he was given Zantac, which also acted as an anti-nausea drug. So with the pre-chemotherapy medicine out of the way, it was time for Paclitaxel, which had to be given slowly, and took 3 hours to empty the bag! This was the first of the actual chemo drugs. After that long stretch, Barry was given the Carboplatin, the final of the 2 chemo drugs. We were never so happy to be done something as we were when the last drop dripped out of the bag! Barry's nurse, who was just wonderful, removed the IV and sent us on our way. She was so kind, gentle and informative the entire day. We were the last ones to leave from Barry's section. We saw a lot of sick people, including one of the women next to Barry who had breast cancer. She was Spanish, and her daughter sat there and read the bible and prayed to her in Spanish. They both didn't cry, and they both had a calm about them. I don't know if it was her first or 50th treatment, but they just seemed so peaceful, even as the nurse injected a bright red toxic drug into her veins. Where do people get their strength? How do they stay so calm? I was once again humbled that day.
On the lighter side, Barry and I had a really good time together that day. It was almost like the cancer wasn't there when the nurses were gone and we were alone in our little section. We looked at pictures in a national geographic magazine, did crossword puzzles, talked, laughed, and ate some food, and drank some coffee (well, Barry drank the coffee.). It was nice to spend time together, basically doing nothing. It makes a nice change.
Barry never got sick that day. There was a chance he could have, but he didn't. When we left, the nurse said that he would most likely get sick when we got home or during the night. It never happened. Even today, when he should have been sick, he wasn't. He has taken all his drugs, relatively on time, and he has be great. He has felt slightly more tired than usually, but nothing major. He also felt light headed for a bit, but that didn't last. I am truly amazed at his stamina. Whatever keeps getting thrown at him, the takes it and throws it back out the window. He is amazingly strong, and I love him more for doing it with the "bring it on" attitude he embodies.
The nurse that came today was a little surprised that he is doing so well. That's Barry, defying all expectations, and that is exactly what is going to get him through this and what will make him the exception to the rule that melanoma can't be beat! I envision the cancer shrivelling up and disappearing within him. He will go on that road trip with his brother, stopping at all the Tim Horton's in Canada. He will watch Daniel grow up, and see Craig build his career in the Army, and will renew our wedding vows on our 25th anniversary! He will drive truck again, and we will grow old together. HE WILL BEAT THIS!
Barry will win his battle.
xxxxx
Monday, September 14, 2009
Chemo Today
We are heading to Grand River this morning for Barry's first chemo treatment. Barry has taken all the medications to prevent an allergic reaction to the chemo drugs and has 3 other prescriptions to take afterwards to keep the nausea at a minimum.
Barry's Mum and Dad are heading to Guelph to take care of Daniel while we are gone for the 5 hours of appointments, and we are so thankful that you don't even bat an eyelid when we need you! We would be lost without you xxx
Thanks for the phone call this morning Steve. I can't say it enough, but your calls mean a lot to Barry. xxx
So we're off in a few hours. I have to say I am a bit nervous, but like I said to Barry's brother... Barry is so tough, I am sure he will handle the chemo like a champ and it won't even phase him! Here's hoping!!
Please have a quick moment this morning for Barry, and send him some positive vibes or say a little prayer! xxxx
I will update again this evening when he is home and settled.
Love to you all xx
Barry's Mum and Dad are heading to Guelph to take care of Daniel while we are gone for the 5 hours of appointments, and we are so thankful that you don't even bat an eyelid when we need you! We would be lost without you xxx
Thanks for the phone call this morning Steve. I can't say it enough, but your calls mean a lot to Barry. xxx
So we're off in a few hours. I have to say I am a bit nervous, but like I said to Barry's brother... Barry is so tough, I am sure he will handle the chemo like a champ and it won't even phase him! Here's hoping!!
Please have a quick moment this morning for Barry, and send him some positive vibes or say a little prayer! xxxx
I will update again this evening when he is home and settled.
Love to you all xx
Saturday, September 12, 2009
The Big Birthday Weekend!
This is going to be another long one! Make sure you are comfy and have a good drink (I might suggest coffee or something that has caffeine!) because you are going to be here a while. Perhaps some tissue on hand would be a good idea, especially for those of us that are sappy and teary!
I will start with Barry's birthday, yesterday. It was a lovely, wonderful, emotional, tiring day for Barry. When he woke up (I tried to keep Daniel busy, but he was so excited that it was Daddy's birthday!) he was attacked by Daniel lol. He was so excited for prezzies that he couldn't wait any longer. Barry, being a good sport despite the lack of coffee running through his body, acted super excited. When I say acted, the present Daniel picked out for him all by himself was a stuffed bear. Not top of the list for a man turning 50, but Barry was so happy to see Daniel so happy. He made such a fuss, Daniel was on cloud nine! When he opened the chain with the 7 on it, he was completely shocked and pleased. He said he couldn't think of a better gift. He said despite the fact that the IL-2 treatment in Buffalo is off (for now), he is still having the same attitude with everything else. He is still lucky number 7.
So after prezzies and cuddles, it was in the shower to get ready for John the physiotherapist's visit at 8:30. He wasn't here long, as it was his birthday, but he said that Barry's hand is improving greatly! Barry has been doing his exercises and you can actually see that he has more movement. John works magic! Barry's knee, although he stumbled last week and it felt worse, is in fact also improving. The injured area is getting smaller, and although it hurts after walking or standing, the time it takes to feel better again is slightly less than before. Yay! John ordered a walker for the times he has to go a distance, and for when he feels more unsteady than usual. So far he hasn't used it, but its there, just in case.
After John's visit, the phone calls started! Barry said he was ready to throw the phone out by the end of the day, but he loved the phone calls. After every one he had a huge smile. He has this tough guy image to uphold, but I could see through it! lol. He had phone calls from so many people, it was lovely. Steve, Wendie, Dot and Gray, Craig, Bill, AJ and Samantha and Uncle (who sang to him), Erin (who also sang), Mark Harman, Mel and Gage (who sang), and I am sure I am forgetting some! Thank you for the calls.
Barry's Mom and Dad came for the afternoon. They arrived around noon and left after 5. The time just flew by and before we knew it, it was getting late. We went to a Chinese buffet where Barry had shrimp, shrimp and more shrimp! He couldn't eat as much as he used to, but he sure enjoyed what he did have! We finished the meal with the wait staff singing happy birthday and bringing a crown, balloon, and a slice of cake to Barry! If I am honest, the rest of us enjoyed that more than Barry, but it was a great laugh! Barry's mom and dad made an album for Barry, with pictures of him from birth to present day. Inside the front and back, Stan wrote 2 poems for Barry, which had us all in tears! Barry sobbed, and was touched beyond words. I would like to share those, because it was so beautiful.
In the front:
Fifty years have gone by since you entered our world. Joy and tears, we have shared together later in life when you became an individual. You encountered problems and had the courage to ride out the storms. Life has not treated you kindly, many others would have surrendered. Not you, Barry, you dug your heels in to the point of obstinacy. Keep on fighting for you will win.
In the back:
Strong in mind
Broad of limb
His silent laugh
Is all we ask of him.
A gentle smile
A voice so calm
As he protects all
Those he knows, from harm.
So come dear son
Fight the fight
Defend us the weak
With all your might.
Thank you,Mom and Dad, for being so wonderful. Words come easily to me, but to describe just how lovely you are, I can't say enough or find the right words! Barry and I love you, we think you're all right! xxx
(did you have your tissues, as recommended??)
My aunt, Janice (aka AJ) and sister Samantha came for a quick visit and to bring some cards. Samantha gave him a card with lots of birthday coupons, which he is looking forward to using (he is using the "long nap" coupon as I write this! Then my aunt gave him a huge card filled with pennies (probably close to 30!) from the taxi company where she and my uncle work. All the drivers signed beside a penny. It was a nice surprise to see all those names of people thinking of Barry. Thank you to AJ and Uncle for having the lovely idea, and for making Barry smile xx
Then my good friend Kristine came round with a card and a foil helium balloon (to which Daniel has taken ownership of) for Barry. Thank you Kristine for those, and thank you for not noticing my sink full of dishes lol
After that, our friends Lorne and Donna stopped by and brought Barry another card. This made Barry a little teary after they left. I think it was partly due to the overwhelming day, and because we have known them for years, but honestly he wasn't expecting them to stop by. Donna offered her services to watch Daniel if we needed it next week, and it was just such a nice surprise. It was also nice because they genuinely care, along with so many others, and Barry was happy. And my sincere apologies to Lorne for discussing Barry's lack of hair loss. It was insensitive and thoughtless, given your, um, condition! xxx
I want to say thank you to everyone who made this day special for Barry. I think he needed his birthday to get a boost. He is nervous about the chemo on Monday, despite what he says, and yesterday gave him more reason to fight. So thank you, from the bottom of my heart, for everyones hand in the outpouring of love given to Barry yesterday. It was so nice to see Barry smile, laugh and even cry because of everyone! Thank you, a million times over! xxx Ok... I should have brought tissues with me!!!!
Barry received more cards, and I know there are more coming next week! Here are the latest arrivals:
1. Daniel Walker. He picked out one with an ice cream sundae on it, because Daddy likes ice cream. He wrote love Daniel inside. Thanks Monkey!
2. Me! Sappy and mushy with a 1998 penny, the year we were married, and completely by coincidence!
3. Mom and Dad. A huge card with every Simpson's character ever on the program, complete with the theme song! You win the award for the loudest and biggest card from 2 people!!
4. The gang at Canadian Cab. This is where my aunt and uncle, Janice and Gerry, both work. Thanks to everyone who signed and added a penny! You win the award for most signatures!
5. Kristine Aubin, from Guelph, who is my wonderful friend who has listened to me cry and then built me back up. Thank you for being there for me, and although we have "known" each other for years, its nice to have such a wonderful friend since moving back to Guelph! xxx
6. Lorne and Donna Bennett, from Guelph. I have known Lorne forever, and Donna almost forever. Thanks for ending our evening on a great note! xxx
7. Samantha, my sister. Barry has been here for most of your life. He appreciated the card, the coupons and the visit! Mwaah!
8. Gill and Gary Highton from the UK. Gary and Barry have been friends for a very long time, and the letter inside the card was lovely! Barry wants to give you a call, so please send us your number on face book or email (threebears1959@yahoo.ca) and we can arrange a time! xxx
9. The gang from Your Advantage Staffing. This is the staffing agency Barry worked for for only a short time. They have called regularly to check up on him, sent him flowers while he was in the hospital, sent him 2 birthday cards, one with scratch tickets, and one full of pennies. Thank you to everyone there, Lori, Joanne, Ruth, Stephanie, Jim, Ralph, and Shellie! You have made Barry smile many times!
10. Harold and Peg Stopher, from St. Catharines. These are Barry's uncle and aunt. This was card number 2 from you guys, so thank you very much! xx
11. Uncle Dick, from the UK. Dick is Wendie's uncle. Thank you for remembering Barry after all these years xxx
12. Auntie Lyn, from the UK. Lyn is Wendie's Aunt. Thank you for the lovely card!
13. Peter and Marilyn O'Shea from the Philippines. Peter is Wendie's dad. Thanks for the penny, you win for most creative penny, with a picture of you on the back. Seeing your picture brought back many memories for Barry. Thank you xxx
14. Jeff O'Shea from the UK. Peter is Wendie's brother. Thanks Jeff. Now that we're friends on face book, we can stay in touch xx
15. Julie from the UK. Julie is Jenny's friend. Thank you for taking the time out to send a card to Barry, a stranger. It tugs at our heart strings when strangers send a card xxx
16. Mike, Lynn and Dan Thyer from the UK. Mike and Barry were buddies and worked together in the UK. Always great to hear from the Boo!! Thank you so much xxx
17. Poppy Watson, from the UK. Poppy is a dear friend of Barry's Dad and Mum. Thank you for the beautiful hand made card. The confetti surprised Barry! The poem was so touching, thank you so much for your kind words. We saw your photo, so we now know who you are !! xxx
18. Ron and Pauline Mailloux, from London, Ontario. They are my aunt and uncle, one of my mom's 4 sisters. You win for "toughest" card, with Sylvester Stallone looking scary! And thank you for the pictures of my mom, and of me as a kid! They brought back some memories and made me tear up! Thank you xxx
19. Roy and Loretta Williamson from Pickering, Ontario. Roy and Loretta used to babysit Barry and his sister Lynn over 40 years ago! Thank you for the lovely note. Barry is staying thirsty! xxx
20. Melody Hutton and Greg Selby from Fergus. Mel is my cousin and Greg is her boyfriend. Thanks for the card and pennies! We still expect the peanut butter cookies you have promised to Barry! And you win the prize for the first duplicate card! You and your mom have the only 2 cards out of all of them that are the same!! lol xxx Oh, and Barry was not impressed that you wrote "50" about 50 times on the envelope! Now even the postman knows how old he is lol
21. Gage Selby from Fergus. Gage is Mel and Greg's 4 (almost 5) year old son. You picked out a great card Gage! Thanks buddy. The cat was pretty cute xx
22. Linda and Troy Baltus from Kitchener. They are new friends of ours :) Thank you for the virtual penny and card! You guys are the best xx
23. Jenny Lewis from Australia. Jenny is Steve's (Barry's brother) girlfriend Karen's mum. We haven't got your card in the post, but we got your e-card! Daniel loved the music and sang along with it many many MANY times! You and your friends have been wonderful xxx
So as you can see, yesterday was a great day. Barry (and I) were beat by the end of the day!
Thursday was a different kind of day, but ended on a high note. We went to Grand River Hospital and saw Dr. Knight, the oncologist. This visit was to test Barry's blood and to make sure his blood levels were able to handle the chemotherapy on Monday. They were :) Then the doctor and his nurse explained what to expect from the chemo and the dangers of infection. The white blood cells fight infection, but they will take a huge hit from the chemo, so Barry will be very susceptible to infection for a bit after the treatment, which could be fatal if not treated immediately. So, we were instructed how to avoid infection and then informed of the signs that an infection is starting, and finally how to react if the signs present themselves. All a bit overwhelming, to say the least, but very, very important.
I had what I will call an "encounter" with Dr. Knight, and as politely as I could, I told him to stuff it. The short version is that I find him cold, rude, and resigned to the fact that Barry can't beat this and I finally, after he was rude when I interrupted him to try and clarify a question that he misunderstood, told him just that! I feel a little guilty that I wasn't nice, and that I was long winded in telling him so (me? Long winded? Shocking, I know!) but it has resulted in Barry seeing a new oncologist in Hamilton. We are excited that this new doctor, Dr. Tozer, will be more positive. I never questioned that Dr. Knight was giving Barry outstanding medical care, it was purely the bedside manner and the attitude that was lacking considerably! Really, truly, we need someone positive that is going to encourage us to be positive, and to stay strong, and to fight this battle. We have come this far, rallied enough supporters, and have had a lot of positive vibes sent our way, we will not have the doctors, of all people, erase all that. Period. :)
So literally within the hour after we arrived home, the hospital in Hamilton, Henderson, called us to book the appointment. We could have gone yesterday, on Barry's birthday, but understandably, he wanted the day off (apart from John the physio guy) so it is now on the 22nd (I think). Dr. Knight is going ahead with the first round of chemo on Monday as planned. Barry and I were clear we didn't want to wait. With Barry's cancer being aggressive, its best to do this sooner rather than later.
Barry's mom and dad are coming back to Guelph on Monday to take care of Daniel while Barry and I head to Kitchener for his chemo. With the drugs Barry is to take before, and after the chemo, they expect a milder reaction that what we had originally thought of, having very little knowledge of chemo before all this. If he takes things correctly, and doesn't have an allergic reaction, it could feel like a tummy bug if he is lucky, and strong, which he is both! Here's hoping that it is smooth sailing on Monday.
Well, I am sure if you are still here, you are ready to be elsewhere! Just a few more quick things.
A friend of mine, Jessica, whose mother has battled breast cancer more than once, is running in the 30k Weekend to End Breast Cancer walk. Although the walk is specifically for breast cancer, she and I both have the mindset that if they can find a cure for one cancer, they can find a cure for all cancers! She will be thinking of all the people she has known to battle, win and lose the fight against all cancers. Although I don't know Jessica well, I know she is a strong woman, who raised a lot of money to be a part of the walk. I am so proud that you can do this for your mother, and for everyone else that has lived with cancer. I have been today, and will continue to think of you tomorrow! One day we will find a cure! xxx
Also, I wanted to thank Linda Baltus and Bill Rostron for the lovely compliments they have given me! Thank you and great big squeezy hugs to you both xx
Steve Walker.... I am sorry for the name I called you lol. You are so lovely... but I won't tell anyone just how lovely. I may have cried, but it was because your words, that come from your heart, are just so purely wonderful. Barry and I both appreciate you, and the distance between us is lessened each and every time we talk or write! xxxxxxxx
Until next time, lots of love to you all xxx
I will start with Barry's birthday, yesterday. It was a lovely, wonderful, emotional, tiring day for Barry. When he woke up (I tried to keep Daniel busy, but he was so excited that it was Daddy's birthday!) he was attacked by Daniel lol. He was so excited for prezzies that he couldn't wait any longer. Barry, being a good sport despite the lack of coffee running through his body, acted super excited. When I say acted, the present Daniel picked out for him all by himself was a stuffed bear. Not top of the list for a man turning 50, but Barry was so happy to see Daniel so happy. He made such a fuss, Daniel was on cloud nine! When he opened the chain with the 7 on it, he was completely shocked and pleased. He said he couldn't think of a better gift. He said despite the fact that the IL-2 treatment in Buffalo is off (for now), he is still having the same attitude with everything else. He is still lucky number 7.
So after prezzies and cuddles, it was in the shower to get ready for John the physiotherapist's visit at 8:30. He wasn't here long, as it was his birthday, but he said that Barry's hand is improving greatly! Barry has been doing his exercises and you can actually see that he has more movement. John works magic! Barry's knee, although he stumbled last week and it felt worse, is in fact also improving. The injured area is getting smaller, and although it hurts after walking or standing, the time it takes to feel better again is slightly less than before. Yay! John ordered a walker for the times he has to go a distance, and for when he feels more unsteady than usual. So far he hasn't used it, but its there, just in case.
After John's visit, the phone calls started! Barry said he was ready to throw the phone out by the end of the day, but he loved the phone calls. After every one he had a huge smile. He has this tough guy image to uphold, but I could see through it! lol. He had phone calls from so many people, it was lovely. Steve, Wendie, Dot and Gray, Craig, Bill, AJ and Samantha and Uncle (who sang to him), Erin (who also sang), Mark Harman, Mel and Gage (who sang), and I am sure I am forgetting some! Thank you for the calls.
Barry's Mom and Dad came for the afternoon. They arrived around noon and left after 5. The time just flew by and before we knew it, it was getting late. We went to a Chinese buffet where Barry had shrimp, shrimp and more shrimp! He couldn't eat as much as he used to, but he sure enjoyed what he did have! We finished the meal with the wait staff singing happy birthday and bringing a crown, balloon, and a slice of cake to Barry! If I am honest, the rest of us enjoyed that more than Barry, but it was a great laugh! Barry's mom and dad made an album for Barry, with pictures of him from birth to present day. Inside the front and back, Stan wrote 2 poems for Barry, which had us all in tears! Barry sobbed, and was touched beyond words. I would like to share those, because it was so beautiful.
In the front:
Fifty years have gone by since you entered our world. Joy and tears, we have shared together later in life when you became an individual. You encountered problems and had the courage to ride out the storms. Life has not treated you kindly, many others would have surrendered. Not you, Barry, you dug your heels in to the point of obstinacy. Keep on fighting for you will win.
In the back:
Strong in mind
Broad of limb
His silent laugh
Is all we ask of him.
A gentle smile
A voice so calm
As he protects all
Those he knows, from harm.
So come dear son
Fight the fight
Defend us the weak
With all your might.
Thank you,Mom and Dad, for being so wonderful. Words come easily to me, but to describe just how lovely you are, I can't say enough or find the right words! Barry and I love you, we think you're all right! xxx
(did you have your tissues, as recommended??)
My aunt, Janice (aka AJ) and sister Samantha came for a quick visit and to bring some cards. Samantha gave him a card with lots of birthday coupons, which he is looking forward to using (he is using the "long nap" coupon as I write this! Then my aunt gave him a huge card filled with pennies (probably close to 30!) from the taxi company where she and my uncle work. All the drivers signed beside a penny. It was a nice surprise to see all those names of people thinking of Barry. Thank you to AJ and Uncle for having the lovely idea, and for making Barry smile xx
Then my good friend Kristine came round with a card and a foil helium balloon (to which Daniel has taken ownership of) for Barry. Thank you Kristine for those, and thank you for not noticing my sink full of dishes lol
After that, our friends Lorne and Donna stopped by and brought Barry another card. This made Barry a little teary after they left. I think it was partly due to the overwhelming day, and because we have known them for years, but honestly he wasn't expecting them to stop by. Donna offered her services to watch Daniel if we needed it next week, and it was just such a nice surprise. It was also nice because they genuinely care, along with so many others, and Barry was happy. And my sincere apologies to Lorne for discussing Barry's lack of hair loss. It was insensitive and thoughtless, given your, um, condition! xxx
I want to say thank you to everyone who made this day special for Barry. I think he needed his birthday to get a boost. He is nervous about the chemo on Monday, despite what he says, and yesterday gave him more reason to fight. So thank you, from the bottom of my heart, for everyones hand in the outpouring of love given to Barry yesterday. It was so nice to see Barry smile, laugh and even cry because of everyone! Thank you, a million times over! xxx Ok... I should have brought tissues with me!!!!
Barry received more cards, and I know there are more coming next week! Here are the latest arrivals:
1. Daniel Walker. He picked out one with an ice cream sundae on it, because Daddy likes ice cream. He wrote love Daniel inside. Thanks Monkey!
2. Me! Sappy and mushy with a 1998 penny, the year we were married, and completely by coincidence!
3. Mom and Dad. A huge card with every Simpson's character ever on the program, complete with the theme song! You win the award for the loudest and biggest card from 2 people!!
4. The gang at Canadian Cab. This is where my aunt and uncle, Janice and Gerry, both work. Thanks to everyone who signed and added a penny! You win the award for most signatures!
5. Kristine Aubin, from Guelph, who is my wonderful friend who has listened to me cry and then built me back up. Thank you for being there for me, and although we have "known" each other for years, its nice to have such a wonderful friend since moving back to Guelph! xxx
6. Lorne and Donna Bennett, from Guelph. I have known Lorne forever, and Donna almost forever. Thanks for ending our evening on a great note! xxx
7. Samantha, my sister. Barry has been here for most of your life. He appreciated the card, the coupons and the visit! Mwaah!
8. Gill and Gary Highton from the UK. Gary and Barry have been friends for a very long time, and the letter inside the card was lovely! Barry wants to give you a call, so please send us your number on face book or email (threebears1959@yahoo.ca) and we can arrange a time! xxx
9. The gang from Your Advantage Staffing. This is the staffing agency Barry worked for for only a short time. They have called regularly to check up on him, sent him flowers while he was in the hospital, sent him 2 birthday cards, one with scratch tickets, and one full of pennies. Thank you to everyone there, Lori, Joanne, Ruth, Stephanie, Jim, Ralph, and Shellie! You have made Barry smile many times!
10. Harold and Peg Stopher, from St. Catharines. These are Barry's uncle and aunt. This was card number 2 from you guys, so thank you very much! xx
11. Uncle Dick, from the UK. Dick is Wendie's uncle. Thank you for remembering Barry after all these years xxx
12. Auntie Lyn, from the UK. Lyn is Wendie's Aunt. Thank you for the lovely card!
13. Peter and Marilyn O'Shea from the Philippines. Peter is Wendie's dad. Thanks for the penny, you win for most creative penny, with a picture of you on the back. Seeing your picture brought back many memories for Barry. Thank you xxx
14. Jeff O'Shea from the UK. Peter is Wendie's brother. Thanks Jeff. Now that we're friends on face book, we can stay in touch xx
15. Julie from the UK. Julie is Jenny's friend. Thank you for taking the time out to send a card to Barry, a stranger. It tugs at our heart strings when strangers send a card xxx
16. Mike, Lynn and Dan Thyer from the UK. Mike and Barry were buddies and worked together in the UK. Always great to hear from the Boo!! Thank you so much xxx
17. Poppy Watson, from the UK. Poppy is a dear friend of Barry's Dad and Mum. Thank you for the beautiful hand made card. The confetti surprised Barry! The poem was so touching, thank you so much for your kind words. We saw your photo, so we now know who you are !! xxx
18. Ron and Pauline Mailloux, from London, Ontario. They are my aunt and uncle, one of my mom's 4 sisters. You win for "toughest" card, with Sylvester Stallone looking scary! And thank you for the pictures of my mom, and of me as a kid! They brought back some memories and made me tear up! Thank you xxx
19. Roy and Loretta Williamson from Pickering, Ontario. Roy and Loretta used to babysit Barry and his sister Lynn over 40 years ago! Thank you for the lovely note. Barry is staying thirsty! xxx
20. Melody Hutton and Greg Selby from Fergus. Mel is my cousin and Greg is her boyfriend. Thanks for the card and pennies! We still expect the peanut butter cookies you have promised to Barry! And you win the prize for the first duplicate card! You and your mom have the only 2 cards out of all of them that are the same!! lol xxx Oh, and Barry was not impressed that you wrote "50" about 50 times on the envelope! Now even the postman knows how old he is lol
21. Gage Selby from Fergus. Gage is Mel and Greg's 4 (almost 5) year old son. You picked out a great card Gage! Thanks buddy. The cat was pretty cute xx
22. Linda and Troy Baltus from Kitchener. They are new friends of ours :) Thank you for the virtual penny and card! You guys are the best xx
23. Jenny Lewis from Australia. Jenny is Steve's (Barry's brother) girlfriend Karen's mum. We haven't got your card in the post, but we got your e-card! Daniel loved the music and sang along with it many many MANY times! You and your friends have been wonderful xxx
So as you can see, yesterday was a great day. Barry (and I) were beat by the end of the day!
Thursday was a different kind of day, but ended on a high note. We went to Grand River Hospital and saw Dr. Knight, the oncologist. This visit was to test Barry's blood and to make sure his blood levels were able to handle the chemotherapy on Monday. They were :) Then the doctor and his nurse explained what to expect from the chemo and the dangers of infection. The white blood cells fight infection, but they will take a huge hit from the chemo, so Barry will be very susceptible to infection for a bit after the treatment, which could be fatal if not treated immediately. So, we were instructed how to avoid infection and then informed of the signs that an infection is starting, and finally how to react if the signs present themselves. All a bit overwhelming, to say the least, but very, very important.
I had what I will call an "encounter" with Dr. Knight, and as politely as I could, I told him to stuff it. The short version is that I find him cold, rude, and resigned to the fact that Barry can't beat this and I finally, after he was rude when I interrupted him to try and clarify a question that he misunderstood, told him just that! I feel a little guilty that I wasn't nice, and that I was long winded in telling him so (me? Long winded? Shocking, I know!) but it has resulted in Barry seeing a new oncologist in Hamilton. We are excited that this new doctor, Dr. Tozer, will be more positive. I never questioned that Dr. Knight was giving Barry outstanding medical care, it was purely the bedside manner and the attitude that was lacking considerably! Really, truly, we need someone positive that is going to encourage us to be positive, and to stay strong, and to fight this battle. We have come this far, rallied enough supporters, and have had a lot of positive vibes sent our way, we will not have the doctors, of all people, erase all that. Period. :)
So literally within the hour after we arrived home, the hospital in Hamilton, Henderson, called us to book the appointment. We could have gone yesterday, on Barry's birthday, but understandably, he wanted the day off (apart from John the physio guy) so it is now on the 22nd (I think). Dr. Knight is going ahead with the first round of chemo on Monday as planned. Barry and I were clear we didn't want to wait. With Barry's cancer being aggressive, its best to do this sooner rather than later.
Barry's mom and dad are coming back to Guelph on Monday to take care of Daniel while Barry and I head to Kitchener for his chemo. With the drugs Barry is to take before, and after the chemo, they expect a milder reaction that what we had originally thought of, having very little knowledge of chemo before all this. If he takes things correctly, and doesn't have an allergic reaction, it could feel like a tummy bug if he is lucky, and strong, which he is both! Here's hoping that it is smooth sailing on Monday.
Well, I am sure if you are still here, you are ready to be elsewhere! Just a few more quick things.
A friend of mine, Jessica, whose mother has battled breast cancer more than once, is running in the 30k Weekend to End Breast Cancer walk. Although the walk is specifically for breast cancer, she and I both have the mindset that if they can find a cure for one cancer, they can find a cure for all cancers! She will be thinking of all the people she has known to battle, win and lose the fight against all cancers. Although I don't know Jessica well, I know she is a strong woman, who raised a lot of money to be a part of the walk. I am so proud that you can do this for your mother, and for everyone else that has lived with cancer. I have been today, and will continue to think of you tomorrow! One day we will find a cure! xxx
Also, I wanted to thank Linda Baltus and Bill Rostron for the lovely compliments they have given me! Thank you and great big squeezy hugs to you both xx
Steve Walker.... I am sorry for the name I called you lol. You are so lovely... but I won't tell anyone just how lovely. I may have cried, but it was because your words, that come from your heart, are just so purely wonderful. Barry and I both appreciate you, and the distance between us is lessened each and every time we talk or write! xxxxxxxx
Until next time, lots of love to you all xxx
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