Blue Haze

Today's entry is going to be a long one! Go and get a drink, a snack, turn on some good music, and make sure your sitting in your comfy chair :)


I will start with today and work backwards.... sorry it has been so long!



Barry's first radiation appointment was yesterday, and his second was today. We were just getting ready to leave yesterday and AJ and Samantha (my aunt and sister) arrived. So they decided to take Barry to his appointment for me. What a nice and welcomed surprise, especially when Daniel said he wanted to go with them and then he did! I had 2 glorious hours to myself, which I spent talking to my wonderful friend Nykki in England, and then to my great friend Kristine. So basically I did nothing, and I loved every minute of it lol. Not that I don't love Barry and Daniel, however it was nice to just relax and to have zero responsibilities!! So thank you do AJ and Samantha!

Barry said the treatment was painless, and he had no side effects as of yet. They said he might experience nausea and headaches, but neither has presented itself. They have said that he will lose his hair, most likely within a few weeks. It is still all in tact so far :)

Barry was taken into the treatment room which had a big machine (hopefully I will have pictures to follow soon) which rotates around his head to radiate in the correct places of Barry's brain. They lie Barry down, position him correctly and tell him not to move. They put a strap over his head to remind him not to move because everything is very precise. Then everyone but Barry leaves the room and the machine starts. It turns to one side of his head, lasts about a minute (during which Barry sees things with a blue haze) then it stops, his vision clears, and it rotates to the other side and repeats the process, along with the blue vision. He described it as wearing blue tinted sunglasses and as soon as the machine stops, his vision returns to normal. That, along with the noise from the machine, are the only indicators that there is actually something happening. So after the minute on each side, he is done. It's that simple and he is free to leave. Setting the machine up in the correct place actually takes longer than the zapping itself!

Barry is also glad that he is in an express group and he has to register at the front desk, then let the girls in the radiation department know he is there, and then wait to be called, which was before he even had a chance to sit down! No long queues, or waiting, or signing this, answering that questions, etc. Daniel and I went with him today and Daniel thought the big machine was quite impressive but a little loud. He really doesn't like loud noises and had to cover his ears today. Funny little man!

We saw the radiation doctor today and he has given Barry a timetable to ween himself off of the dexamethasone (which is the drug used to reduce swelling in the lesions on the brain). Currently Barry is taking 4 of the 4mg tablets per day. On September 5th, he is to start taking 1 of the 4mg tablets two times a day. Then on September 8th, he is to take 1/2 of a tablet twice a day. On September 11th (Barry's birthday) he goes down to 1/2 a tablet once daily and on September 14th he stops the tablets completely.

The swelling that Barry did have once these lesions were discovered was very minimal and with the dexamethasone and the radiation, swelling should not exist by September 14th. Which is great!

Our question to the doctor today was when would they know if this has worked. This doctor (which I will remind you I am not fond of) said that this will be discussed with the oncologist once the treatment is completed. Charming, eh? I am glad I wasn't there (I knew to keep my distance and evening seeing him made me angry and unsettled) or I might not have held back my response to his answer. That being said, we hopefully shouldn't have to see him again, and if Barry needs to see a radiologist again, we will ask for someone other that him.

Our door has been revolving as of late, and I can see it continuing for some time! We have nurses, physiotherapists, dieticians, social workers, and family in and out! There is someone here every day, sometimes 2 or 3 different people a day. We love the visits from friends and family, but the professional visits are tough. I hate that our apartment isn't clean enough or tidy enough and Daniel loves to run around in just his underpants and a t-shirtand sometimes he doesn't like them visiting and he doesn't have a problem letting them know that. Its just stressfull from my perspective. Tomorrow we have the social worker and the nurse visiting. Thursday its the physiotherapist again, a trip to Daniel's school, and then radiation. Next week will be a little more quiet as Barry is done with the radiation on Friday.

Sunday, as you know, we went to Buffalo to meet with Barry's first wife and son, Wendie and Craig. There was a gap since they last saw each other, and it was time. As Dot said, who is Wendie's mum, it was long over due, regardless of Barry's health. And I think, if I can speak for all of us, it went well. Craig is so handsome, and polite, and lovely, Wendie has done a great job raising such a great son! He is now 21 and planning to join the Marines in the new year. Barry is so proud of him, he really is. What happened in the past is just that ,the past and we all came together to reconnect and start fresh. It made me happy, and I know Wendie was pleased, to see Craig and Barry together. Once Wendie recovers from her super long drive, she will send me some pictures and I will post some here.

We drove to Buffalo, with Daniel as well, and met them at their motel where we just talked together. What a wondeful sight to see everyone talking and laughing together, no fighting, no bad feelings, just being together. Daniel was not so sure of Craig before we arrived. You see, he had asked us a few weeks ago for a little sister, and then we tell him he has a big brother. He was not pleased lol. I told him to wait and meet Craig and then we could decide if we liked him. Well, Craig gave him a little football and played catch with him and taught him how to throw. Needless to day, Daniel loves him and was even referring to him as his brother! He was asking questions, saying, "why is my brother not drinking his water?", "why is my brother this, why is my brother that?". It was very sweet and I loved that he just accepted Craig as his brother once they met. We had a nice lunch and then went back to the motel for more talking and we called Dot, Wendie's mum, in England. It was nice for me to put a voice to the face and the kind words she has sent to us, and all the lovely things she has done. Barry said she sounded the same as he remembered and that it was great to talk to her again. He has always been fond of her, and its nice to reconnect again. He really enjoyed it and it brought back many great memories of laughter and fun!

I hope that we can see Wendie and Craig again, and we are planning a visit at Christmas, before Craig joins the Marines. Wendie said that the Marines fly parents to North Carolina once they graduate after 13 weeks, so Barry has that to look forward to. That meant a lot that she would want him there to share in that experience. Someone told me, and I can't remember who it was, that it is good for Barry to have goals, to set his sights in the future, to actually see things happening, so that he doesn't dwell on the cancer and become overwhelmed with pity and grief. So now we have Christmas to look forward to and then Craig's graduation, and then his birthday with Steve on their roadtrip! I, as Barry's wife and the one that sees his ups and downs, appreciate these "goals" that Barry looks forward to! It really does take his mind off of things for a time. I can't believe that he is looking forward to Christmas as much as he is. I think its not about the gifts, as Christmas can always feel, but about connecting, sharing, and laughing. Laughter is Barry's best medicine, and good friends and family mean more to him now. I hope that through all of this ordeal, and Barry's battle, that each and every one that reads this takes that sentiment from this. Life is short and precious, and savour it. Everything can change with the drop of a hat.

Barry has received 2 more cards since I last updated the blog.

1. June and Fred Rosenberg, from BC, Canada who are friends of Jenny, Karen's mum in Australia. Thank you for your prayers :)

2. Trish Zuppa from Buffalo, NY, also a friend of Jenny! Thank you so much, and we were just in Buffalo!!

Please keep the cards coming, and if you haven't sent one yet, you still have time to make it before his birthday! Barry is doubtfull that he will receive 50 cards with 50 pennies. Lets show him it can happen! xxx

I also wanted to say a thank you to Steve, Barry's brother. The phone calls are great. Please keep them coming. I know it can be hard, being so far, and Barry feels the same way. The phone calls bring you guys together and bridge the world. Barry seems to have a skip in his step after speaking with you. And Daniel loves to hear about the Australian animals. He can even spot OZ on a map of the world now!! xxxx

As I said above somewhere, Daniel is starting school soon. He goes Thursday to meet his teacher, Mrs. Manford and to see his classroom. Then the following Thursday he actually goes to school for the entire day! I think I will need a box of tissue that day! Then the following Tuesday he starts his regular schedule of Tuesdays, Thursdays and alternate Fridays for the entire day. Barry and I sit and talk about it and wonder where the time has gone! Nearly 4 on October 29th! He's not a baby, or a toddler, but a little boy now! A big boy, if you ask Daniel! We're so proud of him!!

Well, I think I have said more than my fair share! I haven't written in a few days just because of time! There never seems to be enough of it lol. Wonder why that is??? haha. So now that your bums are numb, I will end here.

All my love xxx