Radiation, Surprise Visitors and more

Hello everyone,

Christmas is just around the corner and I figure I should update the blog! – It has been a while, hasn’t it!

Last week, Brian and got to go to the 2010 Grant Recipient Reception for the CBCF for doctors who are doing various type of research with respect to breast cancer. It was a nice short and sweet event. No long speeches – just two and they were done within 45 minutes including handing out the monies and plaques. Was fun chatting with various staff from the foundation – all different levels. It was held at the Bill Reid Art Gallery and standing amongst his artwork as amazing – just wish I could afford some of it – but you could feel his spirit within the building. For those of you who do not know who he is, he is a renowned Haida Gwaii artist and is known all over the world. I also got my letter which is going out to over 100,000 people as one of the foundations big fundraiser and I proud to have my name attached to it.

Things at the BCCA have not changed from when I left them in March. As mentioned in the previous update, Dr. Sasha sent an email to Dr. Kwan at the agency for my appointment. Nothing. I had to call the agency and ask if there was an appointment to meet with him – and yes there was, they just hadn’t phoned me to let me know. So Brian and I met with him and a young student doctor. The appointment took almost 3 hours – long – never had so many questions asked!! They said I would get a call for my first appointment – they would do the brain first. Guess what – I had to call them to get the appointment – they were too busy to call patients with their appointment times. But I did get my times slowly but surely and radiation began. It was an interesting experience for sure. I felt like I was under the “K-Mart” blue light special! And it was warm. There were five treatments for the brain and then he decided he was not going to map neither the spine nor the hip. He told me to tell Dr. Klimo to order a bone scan!! Let’s just say, Dr. Klimo is not impressed – he knows there is something in the spine and hip! So, I have a bone scan on Monday afternoon. If I had to wait for the BCCA to book one it would be at least one or two months. Klimo orders and it is done! He had wanted it done yesterday but they were booked – and I am glad!

Chemo has started again and I am so glad. Gotta fight the dang tumours in my body. And also the extra drugs to keep the red and white counts where they should be – and that means bonus Airmiles at Safeway – wahooo!! Chemo starts today and then the next session is Christmas Eve – that will be the 3^rd one that has landed on that day! At least it is being done!!!

Went out to Club Colour the other day with my neighbor and painted a few pieces of ceramics for gifts for some of the staff at the clinic – will pick them up next week – and yes, will take pictures of them and post here. It is always so relaxing doing the painting and a lot of fun.

I finally applied for my handicap parking pass – now just have to take it into the office which I will do today on way home from chemo, if my driver had time! Will make things a lot easier when going out and not having to worry about running out of steam within a few feet – there are lots of spots where I grocery shop and at the mall.

The tree is up with the lights on – no decorations as of yet – will have to get on that. The lights are in the windows and on the pony wall. Just need to move the decorations from the boxes to the tree! Maybe I can get some volunteers!!! Patrick and Brian put the lights on the tree! And then get started on my Xmas baking. Have started making some chocolates and think tomorrow will be mincemeat and butter tarts. Then lots of little cookies with my Mom’s really old cookie press – can do lots of shapes for the shortbread and make some other cookies from the recipe book that I remember as a child. Then into the freezer they go.

We have another birthday party for one of our granddaughter’s. Ayla turns 2 on the 17^th, but her party is tomorrow, so will be lots of fun – a whole bunch of little kids running around!! Noise level should be interesting in the building they hold it in, but it is warm and that is good!

Christmas will be a little different this year. Brian has to work on Christmas Dad, but it is an afternoon shift so really not that bad. I am going to my former neighbor’s for dinner that evening – her daughter and son-in-law live a few blocks from here so they will take me. My kids will be at their father’s house. I will be hosting our Christmas dinner on Boxing Day – pot luck and can’t wait. Always fun to have the family over for dinner, especially when there are little kids around.

We had surprise visitors yesterday afternoon. My neice Elaine and her husband Jim had driven down from Clearwater to do some shoping and visit with his son who just lives up a few blocks from us. They were headed back home today so was just a short visit with us but tha tis ok. We don't get to see each other very often so the time we had was special.

Well, guess I should sign off for now, need to make a few phone calls before I go out and go out onto the deck and clean up the mess the Gloria made – she managed to knock over the recycle can and plastic is everywhere – silly cat. Write some cards and mail a gift.

So, if I am not on before Christmas – A Very Merry Christmas to everyone and lot of a peace and love. Looking forward to comments – they really do brighten my day when I read them.

Roni

Vancouver Fashion Week, Doc appts

Hi everyone

Well, I was part of the Vancouver Fashion Week - and what a lot of fun this was - this was the first year they included the Canadian Breast Cancer Foundation and some breast cancer survivors. Brian and I went to the Opening Gala on the Tuesday evening, November 2nd and met up with the designer who was going to be "dressing" me - Patricia Fieldwalker. What a wonderful lady she was! She was quite excited as to what she was going to be doing to me the next day. So, on Wednesday evening, the 3rd, we went to the hotel and were shown backstage to the dressing area. I had three hair dressers descend upon me - oh stop laughing, they had stuff to play with! Dylan, Katie-Rose and a few others had a blast playing with the french silk lace that Patricia had provided them along with an emerald green silk rose she had made. There were lots of bobby pins holding it all together and all had sparkles on them. Then the makeup artist got her chance with me. She did a great job but one of the head makeup gals came over and told her to make me more smokey - and she did - I suddenly had eyebrows again and beautiful green eyes, though she did have a heck of a problem with the eyelashes (mine are not very long). Then it was sit around time, Brian was asked to leave the room after being there for 90 minutes but he didn't mind, you can only look at the ceiling and your shoes for so long. With lots of 20 year olds clad in very little clothing all over the place. I had no real idea as to what was going on. All I knew was that one of the models would be in the robe before me and come off stage and I would get to put it on. It was so beautiful - wish I could have kept it. Brian was out front at this point watching the show and waiting for me to come out. Now at this point I am in the robe and waiting in the wings with the models and Patricia. She took a look at the robe and retied it to lay flat. And remember, I am also in 3.5" spike heels!!! The models did their last walk of the runway and then they introduced Patricia and myself - I couldn't hear this from where we were, but once she took my hand and led me onstage, it was exciting, there were people applauding and cameras flashing and down the runway we went!! It was a lot of fun and would do it again for them next year! When I came off stage, I was approached by the gal from the CBCF telling me that Black Out Productions wanted to do an interview of me! Told her ok, I needed to find my husband - who was in the media room at this point and they were waiting for me - no one told me that and I had gone backstage and changed into my jeans again, leaving my head wrap on. I quickly made to the media room, had a picture take with Patricia and then the organizer of the event, Jamal wanted pictures with me and with some of the models. There were cameras everywhere! Then it was time for the interview with Lauren. And of course I couldn't make it through without some tears but that was ok, They have included my blog on their website and I think that is awesome! Blackoutproductions.ca and then look for Breast Cancer Survivor Walks the Catwalk at the VFW. I can't get it to embed on this page, so you will have to do a little work and you can hear the interview and watch me walk down the catwalk!!!.

I lost a very dear friend on Wednesday afternoon - Samantha passed away at the age of 19. Even though I knew it was coming it was a very hard death the accept. This young woman became an instant friend two and a half years ago and she will be sadly missed. She was such an inspiration to other people, including me, to not accept the word can't. I was glad that I got a chance to visit with her at the hospice and to talk with her on the phone when I was in the hospital after my surgery - even then she was encouraging me to go forward. May you RIP Sam and you will always be in my heart.

Brian and I went to see Dr. Sasha on Wednesday and told him that I had had to call the FVCC to find out if I had an appointment - which I did - and my comment to the the clerk was, when was someone going to phone me? My appointment is Monday morning at 8:15. Dr. Sasha said he would send another email to Dr. Kwan telling him to get the treatment going - I was already three weeks behind and 2 months behind in my chemo. You can't do radiation and chemo at the same time - so this has been a major road block. I plan on telling him as well to get the treatment going this week. I want to get my health back as it has deteriorated considerably - I get winded very easily and find it difficult to walk up and down the stairs. This is all so new and a little nerve racking to say the least. But hopefully this doctor is good and knows what he is doing and gets into action quickly.

Hugz

Roni

That has been about it for the last few weeks. Will update next week with what Dr. Kwan has to say and also what Dr. Klimo has to say as I am to phone the clinic with my appointment dates and then go from there.

Just an update

Hi everyone

Just an update to keep everyone in the loop! Not too much has been going on over the last three weeks other than healing - and that is what s important!

As mentioned in the last post, Dr. Mutat took out his handiwork and it is healing wonderfully and he did a pretty good job at it as well.

I go back and see Dr. Klimo on the 10th for the change in protocol and then more than likely on the 12th for chemo - at long last - I am way too past due for my chemo (was due Oct 1 and well it kinda got pushed back) and need to get the nasty drugs into my system to start battling the tumours again. I also have an appointment with the BCCA to see a Dr. Winkle Kwan who is a radiation oncologist - Nov 15 - long time away at the FVCC where I had been previously. We were hoping to have gotten the radiation information and got the process going. But guess will have to wait to see him and see what he has to say.

On a real bright note, I will be part of Vancouver Fashion Week starting at the gala tomorrow evening. My designer, Patricia Fieldwalker is talking with the organizer and seeing if she is making me two outfits or one. I had thought just one for the fashion show on Wed but she seems to think she needs to make something for me for the gala - heck, I will take whatever she suggests! She sounds very bright and upbeat and that is real nice to have right now. At the end of the month, Brian and I will be attending the 2010 Grant reception for some of the top achievers within cancer research and I am very proud to be a part of this.

I want to send out some thank you notes via here - I know, cheating!!!! Anita - from UWLM - you make awesome banana blueberry bread!!! My friends from England want the recipe!!! Pink Angel thank you so much for the Cancer Vixen book - I am enjoying reading it and can relate all the way through, as can you I bet!! Annie, my wonderful older sister - thanks for the lottery ticket - it is a winner as you told me and has a few more draws to go - maybe a few more bucks would be nice!! Rae & Wilkie - thank you so much for the M&M card - it will go to good use for sure. Lori - the scone lady - they are amazingly good - one box down and another to go. NJ - your cake as always is so good - I really do want the recipe!! Other gals from UWLM for the chili and the pasta sauce - thank you so much - they are coming out next!!! All the flowers that came to the hospital and to home - they made my days even brighter. Especially the ones from the wedding in Hope!!! Long story on that one!!!!

Well that is about it for today - good news for a change and that is nice to have. Soon enough we will be back to ct scans and xray reports to see how the chemo and the radiation are working together in getting rid of the damn tumours.

Love to all
Roni

And now let the games begin

Hello everyone!

First of all, I want to send out a very special thank you to everyone who sent so much love and support to both me and my family over the past few weeks. It has been amazing and I am so overwhelmed at what I received. I hope that I can give it back ten-fold at some point in my life. Gals from work, Lodge Southern Cross, friends from afar and near - Thank you again!

This picture was taken just prior to the start of surgery - sort of the deer in the headlights look. Not sure what to expect for sure.

This is Friday afternoon just prior to Dr. Mutat taking the dressing off and with Diane - of the best nurses that I had while in - she had a tough job ahead of her and handled it with such professionalism and kindness.

This one was taken by Shannon once they put me in the ICU ward. I think I was awake and as soon as she went to take the picture, out I went!!! The hockey turban helped keep everything inside - hard to believe that less than 24 hours later it was off of my head! And yes, there are tubes coming from every which direction and yes, like the dressing, were all gone within 24 hours and it felt great and being able to just get up and walk around. When Dr. Mutat came to see my Friday afternoon, he told me I could go home Sunday - I said nope - I was not ready - emotionally or physically.

The Sunday morning stoned look!!!

For those of you who have been asking, here is a bit of information about the three tumours which Dr. Mutat removed on October 14th. One was the size of a half a pear - if you have a can of pears you can get the idea. That was the one that has been causing the most trouble and it all now makes sense to me. The other two were the size of creamers. They also found two on my spine - one at T-11 and one at V1 and the other is on my hip. These all now make sense in respect to pain I have been having.

Dr. Klimo is calling the BCCA to set up an appointment with the radiation oncologist for the brain and back and this will be done at the Fraser Valley Centre in Surrey. This will be all new to me and it is a little scary with what to expect etc. And he is also going to change my chemo protocol. I did not know but the brain blocks chemotherapy via the blood system. So it is going to try and think of another way to get in - like bloody hell it is!!

I go and see Dr. Mutat on the 28th for him to remove the 41 staples in my head - and I will be so glad once these are gone and I can go back hopefully to my normal sleep pattern. All in good time and one hour at a time.

I must say, that the medical care that I received while I was at Lions Gate Hospital, was the best I have ever received in any hospital. The nursing staff were fantastic, I can't say enough good things about them. Two of them stand out in particular - Diane and Kelly - you were great!! Diane had the hard part of taking the drainage tube from my head and that was the most painful thing that I have had done, but she just held my head, told me to press the medication button and let me cry. Even the food was decent - and that is saying a great deal - yummy meatloaf! Sure there was the odd nurse that wasn't quite ready for that floor but she will grow in time and will move elsewhere within the medical field. Kelly is a one year grad from Douglas Collage and is going to be a great nurse - she asked me if I would like a shower!! Chair showers are far too underrated......LOL..... they are awesome! It sounds like it would be easy, but you need three hands when it comes to juggling the nozzle, facecloth and soap - it is not as easy as one would think it would be. I managed to sneak the bottle home!! I even got a room with a view - not kidding. I requested a semi -private room and I got it on Saturday night - they needed my bed in ICU for a critical care patient from Emerg and I was the healthiest one on the ward and I could walk. Off Diane and I went to a sleepover! I got to pick my bed - by the window and by the bathroom. I had an inlet view and for those of you from the lower mainland will understand that. And had the room to myself till Sunday evening and it was perfect.

Thank you to Shannon's co-workers for making food packages for us - greatly appreciated. Anita's banana/blueberry loaf has been a hit with everyone who has had it! Peggy for the wonderful soup and lunch yesterday. I know there is more coming and just an early thank you very much. NJ - your cake is wonderful as usual - just attacked it today - and hopefully will last for company on the weekend!

I also received a bouquet of flowers and a beautiful note from a young lady I have not met but will do so this week. It brought tears to my eyes, but tears of happiness and joy - thank you so very much Selina!

I owe so much to my family - Brian, Shannon, Meghan, Patrick, Lindsay, Matt and CW - you were with me every way of the step and for this I thank you and love you. Not sure how I would have made it through this ordeal without you by my side!

There was to be another picture but will add it later, I want to get this out to people so that they know I am ok and looking forward to what my future holds!

This was taken with Dr. Mutat after he had removed all of my staples and he asked if I wanted to keep them - no thanks!!! There are a couple of titanium clps which will stay in to hold the brain intact (Good thing!)

Love

Roni

Quick update

Just a quick update here....

Mom is being released tonight from the hospital. I'm sure she will love to have visitors once she has settled in. Just call first is all she's asking, to make sure she is up to having company.

Surgery Updates

Hi Everyone,



Sorry to have not gotten this up sooner, it's been a bit busy the last couple of days.



Mom went in for surgery between 9 and 9:30am on Thursday morning. The surgery was supposed to last about 6 hours, however, it didn't end up taking quite that long. After a VERY long day waiting for news, the surgeon came out to talk to Shannon, Lindsay, Brian and Patrick to let them know how the surgery went. He was able to remove 3 tumors from the right side of her brain and she was stable the entire time. Mom then went into recovery for the next hour and a half and then was taken up the Neuroscience Critical Care Unit.



As the anaesthetic wore off and the pain meds kicked in (she was on patient controlled medication), Mom was quite the source of amusement. She even told Patrick he had to leave because he was too hot. . .



We have all been taking our turns to go in a visit with Mom and bring her anything she needs-magazines, pillows, chocolate, etc.



The nurses have been quite happy and surprised with how well Mom is recovering. The plan was that Mom would be in the NCCU for 48 hours and then in different ward for another 3-5 days, depending on her recovery. Well, the surgeon came by early last night to change the bandages and remove the iv/drainage tubes, (she had a central line in her neck, a line in her
port, an arterial line in her wrist, and a drainage tube from her brain about the size of an old style mouse cord), and was very happy with how well she was healing. So happy that he has said she may be able to come home on Sunday.



So what this then means, is that she won't be able to have any hospital visits from anyone other than immediate family. Mom will however be able to have visitors at home, once she has settled in and is feeling up to it.. For those who would like to come by and visit, please call first to make sure Mom is feeling up to it.



Mom wanted me to say a HUGE thank you for all the prayers & thoughts!!! And that she is looking forward to being home, in her own bed and talking to all of you again soon :)

Unexpected News

Hello everyone,

This is not a blog I anticipated writing after seeing Dr. Klimo on Thursday. When I sent to see him, first thing is off to the exam room and he checks for lumps and bumps (as he calls them) and asks me if there is anything new I should be telling him. Unfortunately, there was something I had to tell him. Told him that I had been having some issues with my eyes - seeing funny lines and other things along that line. He took me back to his office and we chatted a bit more - and then he said, I needed to go and have a CT scan of the head immediately. So, off I went down to the CT department and was taken immediately to the set up area - IV's etc. Because my veins play hide and seek, they had to call for an IV technician. She did a great job and got it in the first try, Once they put a bag of saline through you it is into the room where they keep the CT scanner. I lay on the bed - opposite way of normal - head where my feet normally are. I was put into a head brace and given the contract dye immediately. Then told to just relax and lay still! I was so comfy - and then they took a second set of scans - that worried me right off the bat. But once they were done, I lay a bit till I got my bearings an then sat up - and again had to sit for a few minutes as I was a little dizzy. No comments from the peanut gallery!

I went back upstairs, had a little lunch and then waited for Dr. Klimo. He called me into his office and he pulled up the scan - first response - "uh oh not good, bring your chair over to me" - that way I could see the screen and I knew what I saw was not good. Large dark spot the shape of an egg on the right side of my brain and several smaller "tufts" as I call them scattered around. Paul said that I needed to see the neurosurgeon on call immediately. I burst into tears as I knew the cancer had spread. You don't know how to react or think. The call was put out for Dr. Mutut and I waited. Called Brian and cried - but he said 'Roni, we have made it through stuff like this before, we will make it again." Then called the kids - that was hard to do. Shannon and Lindsay left work and came directly to the hospital and was so glad that they did. The nurses were wonderful - lots of comforting hugs and head rubs. Laura brought the social worker to meet with me and I was glad that she did. After waiting a while, I asked when the surgeon would be here. He was in surgery the rest of the day and was booked for Friday as well. The earliest I could get in was 9:45am on Saturday. It would be a hard wait, but we made it through it.

Thursday night, I had all my kids at the house - we had some wine and some munchies and just talked and cried and said we would be ok. I thank my kids for coming over - meant the world to Brian and to me. They are great kids. And they also got me two dozen beautiful pink roses - they look stunning!

Then it was time for phone calls to people who should know - and a few tears were shed - but tears of love and fear. I have contacted my family and most of my immediate friends.

Saturday came - Brian and I met with Dr. Mutut - we both liked him. He explained what he was going to do and what the large lesion had affected - some of my dexterity had been compromised. He is going to talk with Dr. Klimo tomorrow to discuss some items which I won't go into detail here. He thinks I should meet with the guy who puts you to sleep (brain not working to spell it!!) to see if my lungs are going to be able to handle the stress of the surgery. Good idea. He went through some of the things that could happen - bleeding from the brain, infection, seizures and stroke. Scary to hear but necessary. He said that he would take the main tumour and if he could he would try and remove the smaller ones. They don't like to expose the brain for too long and risk infection.

Sounds like surgery will be later this week - 3-5 days in the hospital. I will have my bag packed with my own pj's and such - might as well be comfy in there! Messes up Thanksgiving - but someone can cook the turkey and still have a family dinner. I won't be posting here during my time in the hospital.

Meghan or Shannon will more than likely put information on my Facebook wall as to when I can have visitors, what room I am in etc. I will be in Lions Gate Hospital - which is in North Vancouver for those of you not familiar with the area. I am kinda hoping that they will drain the right lung - will make breathing easier for sure. Two drains - one for the brain and one for the lung - ok that one is a chest tube.

I am keeping my fingers and toes crossed and hope that all goes well. Thank you so far for all of the good wishes and love and hugs. And from Sandy in England, the beautiful flower arrangement which arrived on Friday.

Remember to think of Brian too - some cooked meals would be great for him - subtle aren't I?

That is all for now.

Love
Roni