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

Slowly But Surely

Ok, so it has taken me a while to sit down and write this. Just had too much going on!

Chemo went as chemo does!! Slow and boring. Val came with me for the first time and as usual we had a good time. It was suggested by me Pain Management Specialist to have an x-ray taken of my lung to ensure that I didn't have a clot in it. Of course this took bit longer than we anticipated – was put on a Stat, but you forget that emergency cases bump Stat cases. So we didn’t get our nice lunch as planned but it tasted good nonetheless. I did get a ct scan taken the following week and will get those results on Sept 30!

Sunday, Sept 19, was the 1^st Annual Terry Fox Run in Coquitlam and I was honoured to have been asked to be one of the two key note speakers. The weather wasn’t the greatest, but as I said in my speech, Terry ran in far worse weather and for greater distances. I managed to deliver the speech with a few sniffles here and there. It was great to have all my kids there plus the few extra. Shannon did a great job and took a video of the speech. It was fun making the front page of the local commuter newspaper as well as the local paper again! The run was amazing - 427 people and over $16.000 raised - wait till next year!!!

Friday, Patrick made a 6 course tasting menu for the family! It was so yummy! And I had a blast shopping with him on Thursday at Lonsdale Quay and Granville Island Market. He is an amazing chef and you can see his passion in his presentation and in the taste. The game hens were the yummiest I have ever had!!!

Saturday was our neighbour's wedding. Donna and Deni – and it was a beautiful day – the sun shone down on the bride and groom. The reception was great – and the food – Mama Mia…. Traditional Italian wedding – lots and lots and lots of food. We even got a little bit of dancing in – though the lungs didn’t like trying to do the twist! But we did have a slow waltz and it was wonderful.

I have a busy week coming up. Going to have coffee with Vera Monday, she used to teach me belly dancing – oh stop laughing, I was pretty good! She was far better. Time to sneak a few things from her closet – seems I did this before!! Wednesday is coffee with Kim at the CBCF and then lunch with Lori – we will have a blast as we always do. Thursday is blood work day and visit with Dr. Klimo – have lots of questions for him and hopefully he will have some answers for me and good results. And then chemo on Friday and Pat is coming with me – time to take a peek at a few hats down on the Quay. I am hoping to get a visit with Samantha, who is in hospice - maybe some sour skittles will make her feel better!

That is all for now.

Love

Roni/Mom