Lovefest :)

At long last, I am adding to our blog. It has been a long road since the 21st of October, and so much as happened. Daniel, our wonderful boy, turned 4. We had a great party for him at the Railway Museum in Milton and Barry was able to be a part of that. It was a great day to see our son, who is growing up before our eyes, be so happy and so full of joy.
Barry has had another round, his second, of chemo. Things were pretty much the same, as far as the side effects go, but they just lasted longer, making him weaker than I have ever seen him. But as far as things look now, that may have been the last round of these particular drugs. The government may have rejected our request for Temozolomide (the chemo drug that will, along with his body, attack the tumours in his brain) however, the company that makes the drug has agreed to give Barry enough of the drug for 6 months! We are seeing the doctor on Friday to become more educated on this drug, and to make the switch. This drug is less harmful to the body, and could be the answer to our prayers. I will update after that visit.
Our visitors have arrived! Barry's brother, Steve, from Australia, is here for another 2 weeks. I am so glad he is here. I know he was blown away seeing his big brother so weak and so frail, but they have been able to spend time together, share their love, and reconnect. Daniel is so happy to have finally met his Uncle Steve from Australia, too! Thank you for coming, Steve. It was the right time to come.
Craig, Barry's son, and his mother, Barry's first wife, Wendie, drove up here from Missouri and Ohio. Craig adds humour and ease to our family, when things are pretty fragile. Wendie's mom, Dot, is here from England. Wendie and Dot have brought be comfort and distraction, both of which I needed. Daniel loves his new friend Dot, having a big brother around, and playing with Wendie. Barry has enjoyed the 3 of them as well. He is proud of who Craig has become, and what a great job Wendie has done. Dot and Barry has always got along so well, and her being here has brought back very fond memories. Wendie, dear Wendie, is even a welcomed distraction for Barry.
I admire Steve's open heart, and his willingness to help. I also love that we can just sit and do what Barry can, and Steve is happy with that. Craig is a smart ass, and I actually enjoy our banter! The boy can eat, and I am glad Wendie foots his food bill! lol Dot, you are so lovely, and I mean that! I didn't know what to expect, except that Barry said I would like you. Once again, he was right. You are smart, funny, kind to the core and a little bit scary, all which I think make a strong, lovely, wonderful woman. Wendie is lucky to have you, and now I am too! xx
Today we had a lunch, and so many people came out to celebrate with us. I believe there were 28 of us in total, which was great! Barry was very tired and left part way through, but thank you to Steve for running him home, and to Erin for staying back home with him. He liked having time with you, like the good old days. Thank you for everything you did while you were with him. You're the best! Bieke, Jennica, Mark, Wendie, Kristine, thank you for comforting me while I was so upset. It was hard seeing Barry leave, and it has been an emotional few days, so thank you for hugging me, rubbing my back, and listening to me. Samantha and Bieke, thank you for helping Daniel get his food. Bill and Sally, thank you for coming and thank you for the game for Daniel. I am sure he will love it, and we can't wait for another visit. Loretta and Roy, I know Stan and Muriel really loved seeing you, and Barry was a bit emotional with your love and kindness to us all, as was I. It was really a pleasure to meet you and to have your love and prayers. Peg, thank you for the support and encouragement and advice. Harold, we didn't get to talk much, but you are one crazy driver, and you brought me a few smiles. Craig, we missed you there, and there was definitely a void. Dot and Wendie, thank you, and thank you to Shelley (who was missed!) for the cushion for Barry. Bieke, thank you for the flowers, and as I type this they are filling our apartment with their fragrance! Kristine, I know you were in pain, but thank you for coming. Our bathroom chat was needed and I love you very much! I haven't said that before, but you have been a true friend through all this. I couldn't have done it without you! Rob, it was so nice to see you and to meet your children. They are so adorable, and we will have to have to get together so they can play with Daniel, and get to know their "cousin"! Aunt Kim, thank you for coming. It was nice to have you there, because you have been supportive. Uncle, we are glad you came and congratts on quitting smoking! I am not glad you have been sick, but glad the result is a smoke free you! AJ, I can't forget you! Thank you for coming, even though you have had a hard few weeks taking care of Uncle and all the other stuff you have dealt with. It was nice to see you smiling :)
Despite Barry leaving early, and being emotional as I always am, I had a lovely time and enjoyed seeing everyone. Once Barry is stronger, we will have to do it again!
Ok... enough thank you's! But I just wanted everyone to know they made the day special for me, and although I didn't spend a lot of time with each of you, and although I was a bit emotional, I was also very aware that Barry, Daniel, and I are very loved and cared for deeply. And that is what I plan on holding onto. Thank you :)
Bieke, who I was so lucky to meet so many years ago, left me this beautiful email today, that she wanted to share with everyone. So on her note, I will say until next time. Lots of love to you all xxx

You said that you were willing to open your blog to visitors and I would like to take advantage of this invitation. It was a great privilege for me to be present with all of you this afternoon. Whenever loved ones gather to support one who is suffering, I feel as if I have entered a holy place. I felt that this afternoon when I saw all of you there with your own level of suffering, worry, and care for Barry.
If you were to compare Barry's illness as a stone thrown in a pond then you could very well imagine how Barry, Sara, and Daniel would be at the centre of these ever expanding circles that wash over all of those who hold them dear. As I was thinking of this, I realized that what is important for all of us is to keep our eyes on these three who are at such peril.
We all want Barry to make it and none of us want to take away the hope that he can fight this. But we also realize how the odds are stacked against him and when we see him so weary and worn out by this illness we are overwhelmed by helplessness and sadness. By anger and despair, even.
At this stage of the game it can sometimes be very difficult to know what the right thing to do is but if we keep this family unit at the center of our attention, I think we will know what the right thing to do is. We will know when to act and when not to.
If we keep our focus on Barry, all of us, then I think we will come up with the most helpful solutions.
I can't imagine the place Barry is in now that he can not perform his role as husband, father, son, brother, and friend to the manner which he is accustomed to. I also can't imagine what that must be like for Sara as she is trying to take care of him and of Daniel. What I can see though is that this is a family where love runs deep.
I have had occasion over these past few years, since Sara and Barry moved back to Guelph, to observe them with one another and with Daniel. I am always struck by the amount of mutual respect, love, and care that they have for one another. It simply breaks my heart to think that they would have to lose one another.
But, how sad that possibility might be, it pales in comparison to the love they have had and they will always have. And this is, I think, what made this afternoon so special even if Barry wasn't able to stay for the whole of it. Sara and Barry have brought so many people together, a colourful bunch of characters who all love with a passion.
Thank you for letting me a part of this.
Bieke

The Emotional Train is Back on the Tracks

Its been a hard few days for me, and I don't want to dwell on it, but at the same time, its good to let it out. I am just finding it hard because this isn't like a normal illness, that goes away in a relatively short time. Its difficult not seeing the light at the end of the tunnel, running on faith and clinging to hope. I am still trying to be positive and believing that Barry's strength will get him through. It just seems that it gets harder at times, and I don't really understand why. Emotion seems to creep up on me and it surprises me the things that get to me.

I think the hardest times, when I look back on it, are when I am feeling alone. I know I am not really alone, and there are many people out there that are cheering us on, saying prayers, and doing very kind things for us. I just miss being a proper couple, doing couple things, and not having this giant stresser hanging above us. There are times we laugh and joke, and then something will happen, and we are reminded that things aren't normal, that Barry does have cancer, and that makes me angry. All I have ever wanted, for all my life, was to be happy. And I found that in Barry, and later it was joined with Daniel, and we were normal and happy and content. Now, its not like that in many ways.

I want to be able to do simple things that we took for granted before cancer invaded our lives. We can't even grocery shop together. I often feel very alone, when I am in the car (the worst place to think, really) and I am running errands. I see something that I want to mention to Barry and he isn't there, or I think of something we were talking about hours before about and I can't mention it to him. I know it sounds silly, but we did pretty much everything together, from laundry to cooking to shopping to yard sales to going out for dinner. Now either I do it myself, or we don't do it. I feel guilty for saying it, but this wasn't how our lives were supposed to be, this isn't what either of us wanted from life. Right now I am angry that cancer has messed it all up. I wouldn't change the love I have felt from and for Barry for anything in the world, I would do all this again in a heartbeat, but at the same time, it just isn't fair. Its cruel and scary and maddening and lonesome and sad and just plain shitty.

There are things that I have had to do that I have never dreamed of doing. Things I have to do to help Barry get through the day, things I have to do to ease his pain, things I have to do to make the day seem normal. And my heart aches for Barry, because I can assure you the worst thing in my life is to see my strong, independent, husband, who made it his life mission to take care of me and Daniel and to make us safe and happy, need help walking, dressing, bathing, and being in pain and discomfort, and being so terribly sad (although he wouldn't admit to that). It actually hurts to see him go through this.

And the guilt I feel for feeling frustrated and angry and tired and sad. One one hand I get fed up doing what I have to do, and then I get angry, then guilty, then sad, then frustrated again, and the cycle continues. Its cruel. And Barry watches me go through all this, and he feels useless and ashamed that he can't do more and he blames himself for "putting me through this". And then we cry and vow to not let this get the better of us.... until it happens again.

I know this is all over the place, that I may be writing in a disconnected fashion, but once again, this is how my mind over works and thoughts roll around without my control. I don't think I am going crazy yet, haha, but I do have a hard time compartmentalizing things. Cancer seems to overflow into every aspect of our lives, and its hard to separate. Sometimes I even feel guilty when we forget for a period of time that he has cancer.

Have I mentioned that I hate cancer and what it does to our family?

I hate that Daniel suffers from this too. He has the stress of knowing Barry has cancer. I thought about it today, and I think he probably only remembers Barry being sick. In a way that is good because its all he has ever known, but on the other hand, he deserves more. I am trying to make more of an effort to play with him more, and spend more time with him instead of running around cleaning and cooking and running errands. He deserves that, and I know I have been making the extra effort like I used to. More guilt. Guilt makes me feel pretty yucky. I have to figure out a way to eliminate it from my thoughts. If only we could control all our thoughts....

On to better things...

Daniel is still doing great in school. He seems to have more confidence in many different things, including being around dogs, using stairs, singing. He has even conquered his fear of the toilet and now, along with his trusty Thomas toilet seat from Nanny and Grandad, he can do his stinky business with ease. At first he needed me to be there, to hold his hand, but slowly he has increased his confidence and today I was able to leave the room. He is growing up so fast! lol Thinking about writing this, ten years from now Daniel can't ever know I shared his pooping habits with the world, so this is our little secret! haha

Barry is now able to walk! He was given the ok to do what he feels comfortable doing. He has been working so hard to strengthen his calf muscles, which have become weak and seized, and today he walked without a walker or cane or crutches across the living room and back. This really lifted my spirits. Later today he reheated his own coffee, made Daniel a sandwich, and walked to the bathroom. He still struggled, but he is on the mend in regards to his leg. I don't think Barry likes all the work and struggles with walking, however we have set a goal of November the first for him to be walking with much more ease. We have important visitors arriving on the 2nd and 4th of November, so he has great incentive.

Barry's brother, Steve, will be flying in from Australia and will be arriving on the 2nd. He has a fear of flying, so this is a big deal for him. We are all looking forward to seeing him so much. He has actually never met Daniel, because when he was here last I was very pregnant, so Daniel is very excited to finally meet his Uncle Steve from Australia. And while I am on the subject of Steve, I want to thank you, so very much, for being there for me. I was in a real funk last night, and when your email came in, I was ready to unload. So thank you for not thinking I am crazy or selfish or being a baby. I just had reached my limit, and you were so kind and caring. It meant so much to me, so thank you. You're the best xxx

Then also on the 2nd, Craig, Barry's son, and Wendie, his first wife and now my dear friend, will be driving up here from the USA. Wendie and I have bonded so much and have become friends, talking pretty much every day! And Daniel is very excited to see his brother again and to play football with him lol. Barry is really looking forward to seeing Craig, and to get to know him again. They are both so laid back and they just let things happen, and Barry doesn't want to overwhelm him with his cancer business, so things haven't been moving very quickly with their relationship. Barry was telling me last night that it will be nice to just be with Craig and let things happen naturally, instead of on a phone where things can be awkward for these two non talkers lol. So all around, we are excited for their visit.

And then, last but definitely not least, Dot, who is Wendie's mum, will be flying in from England on the 4th. I have not met Dot, but I feel as if I have. She is so kind and caring, I can't wait to finally meet her! And Barry and Dot got along famously way back when, so he is looking forward to the laughs and good times. And we are also excited, but on a lesser scale of course, to have some Fox's Glacier Mints, directly from the UK lol.

We are planning a dinner at a Chinese buffet restaurant down the road from us on Sunday, November 8th in the early afternoon. We want everyone to come that can! Please call me if you would like to join us. The more the merrier. I want to celebrate life, family and love. Please try to make it, because there will be a laugh or two to be had!

A few thank you's to mention before I sign off.

Jessica, thank you for the lovely dinner you made us before Barry's operation. It was so delicious and came at the perfect time. I can't thank you enough. And I know I haven't replied to your email, but your offer of making Daniel's cake in a train theme was another great offer, that I fully intend to take you up on! I cannot bake, and Daniel will be just thrilled! I also want your boys to come to the party and have some fun at the train museum if they can make it! There will hopefully be lots of kids there, and lots of fun! I will email you with the details as soon as I can.

Bieke, as always you have been simply wonderful. All the food, the curry, chili, soups, all amazing. And the time you spend with Daniel....we love the break, but most off all Daniel has so much fun with you. The advice you give me, even this evening, is so valuable to me. Its sometimes hard to see the forest from the trees, and what you say is so logical and real and easy. Thank you, I can't say it enough, nor can I express what it means to me. xx

Mum and Dad, thank you for everything you do for us. You really helped us out of a bind the other day. And driving all this way to take care of Daniel means a lot to us. We hope father is feeling better and is on the mend.

AJ thank you for the things you brought us the other day. We really needed it, and made our life so much easier. Thank you also for watching Daniel during part of Barry's chemotherapy appointment. Its easier to get through knowing he is well taken care of.

Samantha, thank you for taking charge of Daniel's Halloween costume! I think he is going to be the best looking cowboy in the north lol. He already loves the cowboy hat! Thank you, because this is one less thing that I have to do, but still needs to be done. xxx

Wendie, for listening to me during my highs and lows this month. I seriously can't wait for the big visit. People may not understand us, but as long as we do, it doesn't matter! You have turned into a great friend, and for that alone, thank you xxx

Finally, to Barry, I love you, and you are the best husband. I mean it when I say I would never change a thing, because loving you and being loved by you has made me the happiest woman alive. I never knew I could love someone with so much of my heart before I met you. I have become a much better person with you in my life. I love you all the way to the moon and back, my darling. You're simply the best!

Nykki, thanks for our chat the other day. For having never met you, we truly are kindred spirits, and your heart is so kind. Thank you for just being you.

Lots of love to you all xxxx

The Operation... So Far So Good :)

It has been brought to my attention that there are people out there that check our blog every day, and they are not happy with me causing a delay in getting something up here lol. So after a long week, I finally have Daniel at school, Barry watching Star Trek or something just as dreadful on the space channel, and I am here to write! So make sure you are comfortable, grab something to drink, but today I am sure you can leave the tissues...hopefully there won't be many mushy or gushy bits :)


As you know, Barry had his operation a week ago Thursday. He was asked to come in the day before, just so they could run any tests that they needed and we wouldn't have to make a special trip just for those tests.


Mount Sinai hospital is in downtown Toronto, and not a fun place to drive to, let me assure you! So on Wednesday, Barry's mum and dad came to ours, and offered to drive down with us so they could help me get back by leading the way! What a lifesaver that was! I had Barry to get us down there, but on the way back I was terrified to go it alone. It was also nice to just have them there with their upbeat outlook and Daniel always loves to have them around.


When we got to the hospital, Barry was taken to his room and as he beat his room mate by 2 minutes, he got to choose the bed he wanted. We were on the 11th floor and in an end room with windows on 2 sides of the room. What a view! From his room, he had a great view of the CN Tower, which was pretty neat, and because there was so much construction going on, he also had a full view of a huge crane! Daniel loved that! It was definitely better than the brick wall view he had for a bit at the Guelph hospital in July

Barry's room mate, John, was a very nice man who didn't mind Daniel in the room and was talkative and nice to have around. He was having an operation on his arm, so he wasn't terribly sick and he even made a few trips to the in hospital Tim Hortons's for Barry! His wife was lovely and Daniel liked her so much he even invited her to his birthday party lol. I think it made a big difference to have someone healthy and easy to get along with, instead of someone grumpy or very sick that can't talk at all. I remember years ago, when Barry and I were first together, I had pneumonia and I was hospitalized for a few days.


So we got Barry settled in, had a little visit, met Dr. Wunder (who was very easy on the eyes and not short like all the rest of Barry's doctors), listened to him explain what was going to happen and what Barry was to expect after the operation, and then we left. The drive home was slow going, and I am so grateful that I could follow Barry's parents! The traffic was heavy and having never driven this myself, it was nice to not have to worry. Also, Daniel was in the back seat and the boy loves to talk! He loved seeing the trains, the planes and the big windmill! It was a very exciting experience for him :)


When we got home, and Daniel was in bed, it was very quiet in our apartment. I don't like Barry being away. I didn't sleep well that night and all the nights Barry was away. Its a hard thing to get used to but I just kept telling myself this was for the greater good of Barry's life, so I managed to get through it!


The next day was the operation. He went to the operating room around noon and didn't finish surgery until 4:30, and we were told it was a 3 hour procedure. I am not a patient woman, and I found the waiting so hard. Daniel was at school, the apartment was too quiet, and I didn't have the ambition to do much to take my mind of Barry. I found out that Barry was being kept in the recovery room longer than normal because he had a slightly elevated heart rate. He was never given any drugs for this, but they wanted to be able to monitor him closely. The nurses told me he was doing well, and the operation was a success and that it went smoothly. Barry didn't return to his room until 10:30pm and the phones in the rooms are shut off at 10:00pm so I never was able to speak with him that night.


Friday morning I called him bright and early and it was so great to hear his voice. He had no pain, and was just bored and hungry lol. Daniel loved that he could talk to his Daddy before school and told him to get better! It was nice to see his smile grow while he was talking to Barry. I took Daniel to school, and when I got back I called Barry again. His breakfast wasn't enough (he needs to eat a bit more or else he gags and sometimes throws up due to his stomach surgery in July). I called the nurses station and advised him of this, and they were more than happy to bring him food between meals when he needed it. I was not able to go visit Barry on Friday, and that is the only thing I wanted to do! Barry still had no pain medicine and the nurses disconnected the pain pump and gave him tylenol every 4 hours. What a strong man Barry is. I would have been pushing that button as much as I could, but he really had no pain. Until he had to get up. Then it hurt a bit, and he was uncomfortable, but he pushed through it and still had no medicine.


Saturday, my aunt Janice and my uncle Gerry and Samantha packed into my little car and headed to Toronto with me. I was still nervous about making the trip myself, and my uncle knew the way, so off we went. I packed a bunch of sandwiches and some other goodies and we headed off at 9am. I am so glad they came, because one of the highways was closed and we had to detour off to Lakeshore and drive more in downtown Toronto. I would have got lost if it weren't for my uncle! Thanks for coming with me guys, it was fun (because I wasn't squished in the backseat) and I couldn't have done it without you!!


We had a nice long visit with Barry and Daniel had a great time colouring and visiting with Daddy. The drive home was nice (again, because I wasn't squished in the back seat lol) and I think everyone slept well that night!


While we were there, Barry and I spoke with the nurses and asked if he could be transferred to the Guelph hospital for the remainder of his time recovering, and we were told he would be discharged sooner than they could transfer him. So Sunday morning Barry was told he could come home!! I was so excited for myself, and for Barry because he was so isolated and so bored out there. And he always feels better being at home than in a stuffy hospital!


Bieke had agreed to watch Daniel and to take him to the Erin Fall Fair. He was so excited to see animals and go on a Ferris wheel! And that is exactly what he did. My little man, who is afraid of heights, rode on a Ferris wheel and was not scared. He also attempted to ride a pony, and actually got on the pony, but then felt very scared and had to be taken down. Poor little guy. But he had fun, and enjoyed spending time with Bieke. Thank you Bieke... once again you really helped us out! I don't think I could have managed the drive with him. The boy loves to talk, and as it was I took a wrong turn and headed the wrong way. Thank goodness for cell phones and Barry lol.


The trip home was a bit rough for Barry. He had to ride in the back seat because his leg couldn't bend enough to sit in the front and being stretched out was far more comfortable for him. By the time we arrived home, he was actually in quite a bit of pain because he didn't move his leg the entire trip. I got his walker from our apartment and brought it to the car, and he managed to get into the building. Our apartment is up about 10 steps so he painfully made it up the steps and then used his walker to get to his comfy spot on the couch. He took some of the codeine that the doctor prescribed before the operation, but since then hasn't had anything for pain. I know I said it before, but I can't believe his strength!


I think Barry is still bored, and longs to be able to simple things that we just take for granted like getting a glass of milk, or getting the mail. I feel terrible for him at times, and wish that he enjoyed reading or crosswords or something that could just take his mind off the boredom. I have started getting him to help me by doing things that can be done while sitting. This morning was garbage day, so I brought him the garbage cans and he wiped the 3 of them down and cleaned them. He also helped Daniel get dressed and ready for school this morning. Both of these tasks really helped me to be able to other things that needed doing and I think Barry felt more productive and useful. I have asked him to think of other things he can do while sitting that could help me out. I sometimes feel like his parent, always asking him to do things for me, so I thought if he came up with some things to do, it would help us both in the long run.


Ok... I have been working on this for days, but have been feeling very run down. Once Daniel goes to bed in the evenings, I follow his lead not long afterwards. It has been emotionally tough, and I will go more into details in my next blog post, which hopefully won't be far in the future.

Lots of love to you all, and I will be in touch soon. I was shocked and pleased to hear there are many people that check our blog every day. I was very touched, and since hearing that, I will make a better effort to write. I love writing, and although it doesn't always come out as nicely as I would like, I find it very helpful and therapeutic. We all need an outlet and this has become mine. I do picture everyone sitting at their desk, sipping tea, or coffee, or perhaps something a little stronger, reading these words. Its a nice picture, and I feel very cozy :)

xxxx

We're On an Upward Swing

Again, a few days have passed between blog entries. I, unfortunately, am still sick. This thing, whatever I have, just won't give in and go away! It progressed from sore throat to a sore throat and cough, with a stuffy, yet sometimes runny, nose, and the fever has remained. I am just so tired, and I feel so drained, and quite grumpy. Its so easy, when feeling like this, to get caught up with feelings of frustration and self pity and things being so unfair. Right or wrong, it has happened over the past few days, but I am trying to be stronger, to make every one's life easier!

Bieke Bieke Bieke.... you have been our savour! We love our little man to pieces, but the 2 naps I have had when he came to visit you were just what I needed! After you guys left, both times, I got Barry settled with everything he needed, and I just slept! The food you brought fed Barry, and the time Daniel spent with you he loved! Daniel loves you, and your family, and now even your little dog Max! Thank you, from the bottom of my heart. And thank you, as well, for picking up the few things we needed today. A real lifesaver!

I told Barry today that I don't have time to be sick lol. And to show you just how strong Barry is, once again, he hasn't been sick at all! This man has had chemotherapy, is living with a sick woman, and still, he is not sick! He amazes me every day with his strength!

So earlier this week, the day after we heard from Dr. Hoey about the change in plans for Barry, Dr. Wunder's assistant called with dates and times with Barry's surgery. He is going into the hospital in Toronto on October 7th to have some tests done, and then will have his operation on the 8th. We have to arrive between 12 and 1pm on Wednesday, which is good because we can avoid the rush hour traffic. I don't know if we should bring Daniel with us or not. He was having some stress because he was at hospitals and doctors appointments a lot so we were keeping him away from all of that. He is a little worried about Barry being away for a few days (they said he could be in for a few days afterwards, maybe come home Sunday or Monday) and Daniel asked if he could only go away for 1 day. I am not sure if it would be best to bring him, so he can see where Barry will be and then bring him again when we pick him up, or if we should not bring him. Any input from anyone would be greatly appreciated! Again, I wish there were a handbook for this. I might just ask Daniel, and see how he feels about it all. Once Barry is in the hospital, Daniel has school on Thursday and Friday, so that will at least keep him occupied.

After Barb, Dr. Wunder's assistant called with the details, we had a call a few hours later from Dr. Wunder himself! I have to say that this call was really heartwarming, and it gave Barry and myself a great feeling about this doctor. He spent about 20 minutes on the phone with me, explaining the procedure with a few more details. He answered all the questions we had, and he was just so kind and down to earth! Most importantly, he was VERY positive. He mentioned the success that Barry has had with chemotherapy and said it is a miracle! He said people with melanoma usually have a low success rate, and Barry's progress happens to about 1 person in a thousand! When I told Barry what he said he started crying and kissed his number 7 charm on his necklace. It was an uplifting moment for us both. Dr. Wunder also said that Barry should get this drug that passes through the blood brain barrier because of the success he has had.

After my call with Dr. Wunder, and after Barry and I calmed down from being so happy, I called Grand River Cancer Centre to cancel Barry's appointment for Chemotherapy on Monday. When I spoke with the nurse there, I mentioned this drug (which I now know is called TEMOZOLOMIDE) and the nurse said she would talk to the woman in the pharmacy that assists in getting drugs that are not usually covered by drug plans or for people that don't have drug plans. Gloria (the nurse) called me back and said that the woman in the pharmacy said they need to get what is called a section 16 from the government, which essentially allows Barry to have the drug and allows either the Community Care Access Centre drug plan that Barry has to cover it, or if they won't, then he can get it paid for by Trillium which is an Ontario based program that assists people with drug costs. IF Barry doesn't get the section 16, then the pharmacy lady will contact the company that manufactures the drug and ask for a compassionate care donation (I think that is what she called it) which means the company will donate the drugs to Barry. If that falls through, we will have a fundraiser (Lori, I will need your help with this!!) and get the money that way! I will not rest until we get it :) So when I was speaking with Gloria the nurse, she said the doctor (Dr. Hubay, who is filling in for Dr. Knight, Barry's normal oncologist, while he is on vacation) had already dictated the letter requesting the section 16, and that it would be typed up and sent out by Monday, hopefully. Then, we wait for approximately 2 weeks to hear back from the government for a reply. People from Grand River will call me and let me know the governments decision, but Gloria said that they have received approval for this very thing recently and that she felt positive it would come through. If there is something you can do for us, it is to pray that Barry gets approval for Temozolomide, and that is operation is a success!

Barry's parents came for a visit Saturday, and although I was not feeling great, it was nice to see them and it was nice to just rest while they were here. I was pretty emotional, and cried a few times, but I felt so much better after their visit. Stan, Barry's dad, brought me 2 books about healing from a friend of his. As Barry's parents are planning to move here shortly from St. Catharine's, they are clearing out some things they don't want or need any more. Well, Stan had a really nice golf picture that he didn't want anymore, so he brought it to his golf club for them to use. The woman he gave it to, Delia, of course asked why Stan was giving away this picture, and Barry's cancer came up. She was shocked, but said she had something for Stan. Off they went to Delia's car, and she handed him these 2 books. She doesn't know why she had them in the first place, and why they were never removed from her car, until she found out about Barry and she felt it was all meant to be. She wrote little notes in the books and passed them along to Stan and myself to read. Delia didn't have a reason to read these books herself, or a reason to keep them in her car. Everything happens for a reason, and our lives are forever touched by Delia. Thank you, Delia xx (Stan, I hope you told Delia to read the blog so she can keep updated!! lol) It just touched my heart, Delia's gifts, and the random way it came about.

I want to send out a big congratulations to Jill Ooms, who has become a friend of mine through Jenny and through this blog, and who is battling breast cancer. Today she, along with her family, participated in the Run for the Cure, which raises money for Breast Cancer. I am so proud of her, for raising money for the cure, and for the emotional race she ran today, remembering those that have lost their battle, celebrating for those that have won their battle, and fighting along side those that are still fighting their battles! You are really an inspiration, and wonderful woman who always has a kind word, uplifting comment, and brings me a smile, despite your own battle. xxxx

Steve and Karen, Barry's brother and his girlfriend, sent me a lovely card. It brought tears to my eyes, and when I read it, it helps me to carry on with my part of this fight. It was so so lovely, and the words were so kind. I almost felt awkward reading those words about me at first, but it feels so good to read them. It was very kind, and very heartwarming. Thank you and we can't wait to see you very soon xxxxx

We have finally planned somewhere to have Daniel's birthday party at the end of this month. His birthday is approaching quickly and our apartment is too small to have little kiddies running around in it! So after many failed attempts to have it at a farm, or a nature centre, or a children's museum, we have finally found the perfect place for a party for Daniel. We are having it at a railway museum just outside of town. Daniel is a huge HUGE fan of Thomas the Tank Engine, the children would get to ride a street car, we can bring in our own food (which is not allowed most places, surprisingly) and we get a room to ourselves at a reasonable rate. I asked Barry how many children we should invite (I was thinking 4 or 5) and he said 10! I told him he better be feeling good enough to tag along if that many children were coming lol. Daniel is super excited and keeps telling us that Emily needs to be invited. I guess that is his best friend at school. Daniel was listing of some other children he wanted to invite and then he told me he wanted Mrs. M to come, his teacher. I guess he really likes her!! lol It was too cute :) He also took it upon himself to invite Bieke to his party, which also warmed my heart.

Its 11pm now and even with my nap this afternoon, I am starting to fade. Thank you to everyone who reads this. I know I have said it before, but knowing that so many people take the time to stay up to date means a lot to Barry and I. We have had nearly 3000 views since the beginning! Every day we find out someone else who is reading along and sending us support, like Jody and Paula (muah!) and Sir and others we haven't talked to in a while. Thanks. You all make us stronger. STRENGTH IN NUMBERS. Its how we make it through this battle xxxxxxx

At Long Last...

... I have finally found the time to update our blog! I am so sorry its taken so long. Things have been very chaotic and changing from hour to hour lately.

I will start with saying that everyone is doing ok, that nothing bad has happened. I know I have received a few emails of concern and I just want to let everyone know we are ok. I am just tired! I have a very sore throat and a slight fever with aching bones. Nothing too worry some, just making me slower and more tired.

Barry's spirits, until today, have been quite down as well. His legs are very sore, and his good leg is tired from supporting the bad leg. He also had some swelling, and it was very uncomfortable with the pain and swelling to walk. Yesterday he cried from walking to the washroom and back. Poor thing. Its really terrible to see him in so much pain and not be able to do a damn thing for him. He has been keeping his legs and feet elevated, and the swelling has come down considerably in the bad leg and completely in the good leg. His boredom is driving him insane, and he is tired of sitting in the same spot. Thank goodness we have somewhat of a view out our window. Our last apartment in Hamilton had a brick wall outside our window. I try to keep his spirits up, buying him sherbet (he loves it) and trying to cook things he loves. Trying, not always doing so well lol. It breaks my heart when he cries, and I can only tell him things will get better so many times.

We had some good news today and minutes afterwards he said he was feeling more positive and emotionally better. That lifted a weight off my shoulders, because I was really starting to worry about him possibly being depressed. But could you blame him if he was? I certainly couldn't. I see every day how many things he can't do, and how many things frustrate him, and the amount of pain he deals with every day, and the thought that things might not work out that he struggles with. The amount of things I have swept under the rug, turned a blind eye to, or ignored to save Barry his dignity... things I can't and won't write about to not embarrass him, its a lot to hold inside. And that is just me, and I am not the one living through these things. I don't pity him, because that would not make Barry happy, but I feel a tremendous sadness for him, and I wish I could take it all away for him....

But I have gotten off track. Our good news. We had a call from the new orthopedic surgeon (Dr. Armstrong, the original orthopedic surgeon we met in the emergency room, is on vacation until next week, so we had to get a referral to a new one) Dr. Hoey (pronounces "who-wee") today and he has a date arranged for Barry's operation on his knee. He originally thought that a knee replacement would be the best option, and that it would give him the strength in his femur that he needs to be able to walk and prevent it from breaking. Dr. Hoey sent Barry's scans and reports to a Dr. Wunder (pronounced "wonder" which we find encouraging in itself!) who is located in Toronto at Mount Sinai hospital. He is more of an expert in this sort of thing, so they have decided not to do the knee replacement, but to do something they think will provide more support. They are going to "debulk" the femur of all the cancer they can (basically they will cut it out) and fill the hole that is left from that procedure with a bone cement. This is very strong stuff, and can also allow the bone, if it is not too badly damaged, to regenerate and heal. If the bone does not grow and regenerate, then the cement is strong enough to replace the bone he has lost. Then they will add a plate on the inner side of his thigh for extra support, and he will be able to walk again! They said he should be walking and the leg will be able to bear his weight possibly the next day, or at the latest, the day after that. The hospital stay would only be a few days, probably 4 at the most. This is very encouraging because anything else that previous doctors discussed would have a very long recovery time, and that is definitely not what we want. None of the procedures would completely rid the area of cancer, so we wanted the option that would have Barry back on his feet the quickest. So between Dr. Hoey and Dr. Wunder, we are very pleased with their respect for Barry, their team work, and the speed at which they are moving on arranging everything. Barry will be admitted to the hospital next Wednesday, the 7th of October, and the operation will take place the next day. I guess they want to do some scans and x-rays to figure out the course of action before they get in there. They also want to see if the tumour has shrunk, because Barry has had success with other tumours on his chest, back and arm that we could physically see.

I have so much more to write, and so many more things to tell everyone, but I am fading and am ready for bed. I have chills then I get so hot I sweat, and I just want to go to bed! 8:30 might be a record, but Daniel is home tomorrow and I know I won't get any rest between him and Barry. So I am going to take it while I can. Now lol.

Just before I go, I want to give a big thank you to Bieke today. She cooked us a lovely lasagna, and it was the perfect time to help us out! I didn't feel like cooking, and I made a pizza yesterday, so Daniel and Barry needed a good meal. Thank you, and it was delicious! It means a lot to us all, and I appreciate it more than you know! Your support, when others are having a hard time dealing with Barry's cancer, is so special and heart warming!

Lots of love to you all, xxxx.

Forever

This is a great song, so I thought I would put in on here. I put it at the top, so you could read and listen at the same time :) I have found my forever with Barry. As corny as it sounds, I cannot picture life with out us being a team, and that's just another reason among many, that Barry will win this battle.

We found out today from Dr. Ghert's office that Barry is not a candidate to have his femur cut off above the affected area and then a donor femur put back in place. We didn't actually get to speak to the doctor, so we aren't sure of the reasons, but after being told that the recovery time for this is 6 to twelve months, Barry knew that it wasn't the right choice for him. Who wants to look forward to that, really? I know I wouldn't want to be faced with that.

So, Barry is going to go ahead with the plate screwed into his femur option. Along with that, he is going to have some radiation, I believe it is 3 sessions 7 days apart. Dr. Basur, the radiation doctor we saw on Thursday, said that because of Barry's amazing response to the chemotherapy, he feels and hopes that it will reduce the cancer in his femur as well. Here's hoping!! It was nice to hear the positivity from him.

We tried to call Dr. Armstrong, the orthopedic surgeon that we met at the emergency room last Saturday, to arrange the operation, and low and behold he is on vacation until October 5th! Lovely. So then I tried to call the nurse at Grand River to refer Barry to another orthopedic surgeon, and the entire cancer centre was closed. At 4pm. Frustrating. Very frustrating. But we will call again first thing Monday morning, and try to get this all arranged. So much waiting.

I am also waiting for a woman from Henderson (the hospital in Hamilton) to call me with information about the very expensive drug that could help Barry. That will at least give me a starting point and some information to arm myself with. A friend of mine suggested to have a big fundraiser, like a stag and doe, to get enough money for one month's treatment, to get him started and to see if it would work. I love the idea, but don't have the time to organise it. I know people are always asking if we need anything, so anyone out there with huge ambition that would like to do this, by all means go ahead lol. I wish I had the time to put something together, because I really think this is the missing link to getting rid of this cancer. Its something we have to try. Fundraiser or not, we will get this drug for Barry!

Today was a hard day for Barry, emotionally. I can't begin to describe how it feels to watch him suffer like this. I know I have said it before, but he has always been so strong. Barry's parents told me that as a toddler he used to carry big rocks around, and once he pulled a tree stump out of the ground himself, and I have seen him carry things that would take two men normally. Now he doesn't have the strength to use his crutches, and a trip to the washroom wears him out. He needs a seat in the shower, not only for fear of slipping, but because its hard to stand for so long. He has to plan his trips to the washroom, because he is slow, he stays in the car instead of coming into the store, because its so much work to get in and out. Tonight he was really angry and frustrated at what he has become. I can only tell him it will get better so many times, both of us knowing that it might not get better for a while, if at all. We are being hit hard lately, and we are both finding it hard to stay strong. And the sad thing is, all we have is faith. When that starts to waiver, we become weaker, and then we can't stay as positive. Its all a vicious circle really. I think today's frustration is because we were so busy with errands, and Barry couldn't help. He did some dishes while I was out (he waits until I leave to do things I would tell him off for doing if I were home!) and he handled some important phone calls, but I was out all day running around, and he wants to take care of me and Daniel. This part is hard for him.

I didn't want to go and do all the things that had to be done, and I think perhaps if I was less vocal about that, it would be easier for him. So I am going to make an effort to keep those feelings to myself. I don't always want to make all the meals and do all the cleaning up. You have to keep in mind I am not the most domesticated wife lol. Barry enjoyed cooking, and always took over what I started. He washed and dried the clothes while I folded them. He washed the dishes and I put them away. We were a team, we filled each others holes, we were in sync. Now its me doing these things, and he wants to do them. Although for some reason he still won't sneak into the bathroom and clean the toilet.....

Support and kindness keep me motivated, so I thank everyone for hanging in there right beside us and not forgetting Barry's Battle. It means so much that there are people here for the long haul. That truly makes a huge difference to our attitudes. A nice phone call, or letter, or visit does two things: it takes us away from the cancer, and it (usually) makes us laugh at some point which lifts our spirits. We have heard so many times that people don't call because they know we are busy. Well, we have an answering machine, and I will 99% of the time put off doing the dishes (or something just as terrible) to have a lovely chat! Please don't be afraid to get in the way. We like pushy people that call and drop by unexpectedly! lol Please remember that :) And consider yourself told off lol.

Daniel continues to do well in school. He got another sticker for being a good listener. (I am beaming with pride!) He has been working on pulling up his own shorts/pants and can now do it without a thought. (he can count to 1000, read and spell, knows how to mix colours, but had no interest in dressing himself, go figure!). We are working on shoes, but those darn heels make it hard to get his foot in easily. His favourite friend at school is Emily and says he is extra kind to Colin as he cries every day because he misses his mommy. He is doing so well and we are so pleased he is finally in school! He has been asking to go for over a year now. We are glad that is over, because he never forgets lol.

We had the hospice lady, Peggy, visit with him on Wednesday. She read a book with him about the life cycle of a leaf (starts as a bud, forms into a leaf, changes colour, falls off, then dies) and he loves the book. She also said that things can change, but they are still the same thing. (the leaf changes colour but its still a leaf) and I think that has given him some peace. He is a unique little man, concerned about a lot, and this seems to have calmed him somewhat. And he told Bieke that we visit a lot of hospitals, so we haven't brought him with us since. I think that has made a big difference in him too. All this help with Daniel, from our family and friends, to his teacher, and Peggy, it reminds me that it does take a village to raise a child and it makes me feel good to have the support for him. Having Grandma pick him up from school and then having a pizza dinner, and a play date with Donna, and a trip to the park with Bieke, and learning so many new things at school, and a visit from Nanny and Grandad, and knowing he has a big brother out there, and getting a Koala from Uncle Steve, ALL help him to be a happier boy. It also fills in the gaps that Barry and I leave by having no choice but to fight this battle. I know he will be okay through this journey. Ok... I'm crying, but happy tears!!!

Time for bed now. Releasing this amount of emotion does also make me tired. But I think its good. It makes room for more, and I know there will be more tomorrow. Its cleansing and rejuvenating and good, even though its sometimes hard to see on the screen in black and white.

Lots of love to you all xxxxxx

There Is Some GREAT News in This Post...

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