A dragonfly, shoes and roses

Hello friends

I know it has been a while since I wrote on the blog last, but lots has been going on and as well, I have not had the feeling that the blog was being read or was of any interest to people.

I have met with Dr. Klimo and he put me on the capsitabine (the oral drug) and will be on it two weeks on and two weeks off. I also had my first shot of faslodix which is the anti-hormonal drug that I will be getting once a month – it slows down the production of estrogen – not that I have much left – LOL! And by the way, the needles for this sucker is about 2 inches long and I am not kidding! If you remember, I was on capsitabine through the Cancer Agency, but at a much higher dosage. I am now on for the first three days 1000mg and then after that 2000mg per day. This is in comparison to 4000mg right off the bat with the agency. I have had mild side effects with this drug – mostly the hands burning a bit and drying out. The feet are just fine! Last Friday, I started the Vinorelbine at Lions Gate Hospital – via IV – doesn’t take long to get it into my system – think getting the anti-nausea meds first took longer! Had some issues with the insurance company and the drug pharmacy that provides the drug to the hospital – had three phone calls during my treatment! Was funny in one way, but stressful in other ways.

The side effects from this drug are nasty – far worse than some of the other chemos –but at least for only a short time. Was sick from Friday until Sunday, so I can handle that – not the greatest way to drop pounds but I lost 7 over the weekend. Gives you an idea how bad the side effects were!

Meghan and Madelynn came with me to the hospital. The nurses loved Madelynn and she was such a good baby the entire time we were there. We found out that she loves to play with napkins and shred them into pieces – it was actually quite fun to watch her!

Next week will be busy for me medically! Supposed to see Dr. P on Tuesday, but I think I am going to cancel the appointment and just get my paperwork from the last month – which will show the results of my CT scan which I had last week. I also see my family doctor for my injection, Dr. Klimo on Thursday to see how I am doing and get blood work done and then on Friday have my IV chemo! See, I told you I would be busy!

Ok, now that we have the medical stuff out of the way! Onto the fun stuff. Shannon took me to a place called Club Colour – a place in Langley where you can paint ceramics. They have just about anything you can think of from frogs to horses, monkeys to lizards, travel mugs and regular mugs, cookware, Christmas ornaments, dragons and castles. It is amazing. And so much fun and inexpensive! I can’t say what Shannon was working on as it is not finished and could be a gift for someone or she might keep it for herself! I went small and painted a dragonfly. Now when you paint your ceramics, you have to put on three thick coats of paint, use the blow dryer on the item. It may sound easy, but the small pieces can be a bit of a pain! And when you finish them, they don’t look that great, but once fired, they look wonderful – as you can see by the picture here. Now, I had so much fun the first time that Patrick and I went today and I painted a stoner frog – you will see him in a few weeks and well, can’t say what Patrick painted as his is a gift for someone! It is an inexpensive way to have fun and just be a kid again. I will be going back a whole lot more!

Now, for those of you who live in the Vancouver area, you know about the annual Army & Navy shoe sale. I have never been! That has now changed. Though I didn’t go opening day – that gets a little crazy. But Shannon and I went to the one in Langley the same day we did our painting. And I got the sexiest shoes for the Military Ball Brian and I are going to this Saturday! 3.5” spike heels with some bling on the toe – they look fantastic – and yes, there will be pictures after the ball! And Shannon bought me some cute little mules – orange and black – they are so cute and so comfy.


Been working in the garden a bit – well more Brian than me, but I will get there. I have been using the weed puller getting rid of the dang dandelions. Brian got his veggie garden going and I got the seeds planted and some of them are starting to sprout. The roses in front of the house are starting to bloom – yes, I said roses!

Getting ready for the Relay for Life. My personal goal is $2,000 and I am just $76 shy of it. The team goal of $10,000 – well, at this point in time, we are a long way off – about $7,000. Hopefully, once we get some more team members, we will raise our goal – I want our team, the Country Dancing Boobies to be in the top 20 teams this year. Have also been busy with the steering committee, my partner Mary and I are getting things ready for the Survivor Tent – not must breakfast, but some fun activities which I think all survivors will enjoy. I know she and I will enjoy them! Also, my friend Rae came over along with Patrick’s girlfriend Lisa, and we cut out about 100 daffodils which will be used at the Relay. We will have to get together again and finish off the last 100 and make some other items which we will sell at the Relay and maybe beforehand.

This Saturday, is the 65th Garrison Military Ball and is being held at the Hotel Vancouver. I love going to this ball – it is very formal and elegant. Men in their dress reds and blues or tuxes and ladies in full length ball gowns. It looks amazing. This year is very special. It is the 100th Anniversary of the Seaforth Highlanders of Canada, the 100th Anniversary of the Royal Canadian Navy, the 65th Anniversary of the liberation of the Netherlands and the 65th Anniversary of VE Day. So a lot of pomp and pageantry. The Lt Gov of British Columbia will be there as well as the Dutch Ambassador and his wife from the Netherlands. Lots of military bands will be there. The band that is always there is the 15th Field Regimental Band along with the 72nd Seaforth Highlanders, the British Columbia Regiment Pipe Band and hopefully the Naden Band from CFB Esquimalt. There will be lots of pictures for you all to see in my next blog.

Almost forgot - bad me - but we also went to a wedding a couple of weeks ago - the first of 4 this year. Cam and Kyara got married on the 25th. Cam is Corey's twin. Kyara looked so beautiful and Cam cleaned up very nicely! And Ryan was the cutest little ring bearer, even if he did steal the show at some points! We had a great time and wish the newlyweds a liftime of love and happiness.

Well, that is about it – I am done and time for me to head to bed. Ok, after I attach some pictures here and then bed! Hope to hear from more friends on the blog –I do love to hear from you and it means a great deal to me!
Hugz and love
Roni

Busy Weekend and Treatment Start-Up

Hi everyone!

Thought I would give an update as to what has been going on the past few weeks!

On a drug theme - no, not those kind of drugs! I had to find out from my insurance company what percentage they would pay for two of the drugs that Dr. Klimo wants me to go on. I got a call from the drug company that make Faslodex and they are going to co-pay, so I will not have to be out of pocket for that drug - it is expensive. My first dose will arrive here tomorrow and I will take it to my family doctor next week for her to inject it into my poor butt! The other drug, Vinorelbine, again, my insurance company will pay 100% of that drug. So, now just waiting to hear back from the nurse and the pharmacist. Will need to book a time for blood work at the medical day care at Lions Gate Hospital and then a chemo time as well. Things are moving forward and I am so glad about that. If you remember, I tend to be subject to lots of the side effects of any drug I have been given over the last 2 years. With the Faslodex - could be a good chance I could end up in hospital - it causes bladder infections and fevers - just what I need. There are lots of side effects for both of the drugs, but I will just try the power of positive thinking and maybe they will just not appear!!!

On Saturday, the 10th of April, it was the kick off for the Coquitlam Relay for Life and I was at our mall, with some of my family. They had me "lighting" one of the luminaries (was made for me last year by Chelsea!) and then pictures taken. We got about $100 donated and sounds like we may have gotten one team for the relay.

Later that afternoon, I headed down to the Hotel Vancouver to volunteer at the Diamond Ball, which is one of the big fundraising events for the Canadian Cancer Society. It was amazing and so beautiful. I was one of the volunteers for the VIP Champagne Reception! Got to talk to some wonderful patrons and may have talked one couple to coming to the Military Ball in May!! -
I was smart and took my flats - after a couple of hours of just standing in heels, the legs and feet get sore. And once they started yelling at me, I changed from the heels to the flats!! Came home to a beautiful bottle of red wine - it was so good! Thank you Brian!

Starting to gear up for the Relay for Life in June. Need to talk to a few places for items for our Silent Auction. And going to make a few items we can sell at the track and to friends. Should be a lot of fun. And if you want to join the team, just let me know and I will give you instructions and the same goes if you would like to make a donation as well. My goal for the team is $10,000 and my goal is $2,000. I would love to be in the Top 20 Teams, but I need you to help me!

That is about it for now. Will keep you posted about the chemo and hopefully will have pictures of the nurses at the hospital.

Ciao for now!

Roni

Whirlwind Week!

Hi all

Time for an update - just took me a little longer than I had hoped. Last week was a crazy one - and for the most part was a great week!

Saw Dr. P on Tuesday and had my blood work done. Numbers were in the normal range he said - I will need to get a copy of my file again to see what he wrote and to actually see what the numbers were. He asked how I had been feeling since seeing him last and with taking the tamoxifen. Other than tired, not much has changed. But did tell him that I felt I had been dumped by the BCCA. He asked why - and said it was how Brian and I felt and how it was told to us. Also told him that I had been to see Dr. Klimo and Gary asked how that went. Told him that I was more than likely going to go with Paul as he was not going to give up on me and that the had drugs he was willing to try and help me live with more quality not just length. He asked that I try and stay on the Tamoxifen for a month and then see what the CT scan shows.


But on a righter note from the cancer clinic, as I mentioned, Rae had made some caps during her time as a volunteer during the Olympics. I took them into the chemo room - well, wanted to say hello to all of the nurses as I hadn't seen them for a while. They loved the caps. Lisa took them all out of the bag and the women patients got all excited. Two of them were wearing the caps by the time I left. They were very much appreciated!!!

My friends Carol and Mary Margaret arrived from the States on Tuesday and enjoyed their company for a few days. Was first time meeting Carol and we just clicked. Mary Margaret and I had briefly met 7 years ago but only for an hour. Took them to the Vancouver Aquarium and they thoroughly enjoyed it - I did too. Loved the 4D show that they have going on at the moment. And if you live in the city, you should try and get to see it, it is very cool and that is all I am going to say at the moment!!! Carol kindly took Brian and I to dinner and we went to Ozarks in Langley. Some of the best ribs I have had!!! Thanks to Rick and Chantal for the tip!!! They left on Friday and had forgotten it was the start of the long weekend - so took them about 4 hours to cross!

Also on Tuesday (was a busy day) - I spoke at Maple Ridge Secondary School as part of their in-house Relay for Life. The crowd of students was smaller which was a little disappointing, but I got my point across, even if through tears. I had a wonderful support group with me - Meghan/Ryan/Madelynn, Patrick/Lisa, Scott, Carol and Mary Margaret. I will be going to their relay in May for the Survivor Lap. I hope that they surpass what they raised last year - $17,000! Way to go Ramblers! Unfortunately there was only one picture take of just me but oh well, that is ok.

I spoke at length with the pharmacist from Lions Gate Hospital on Thursday regarding the different drugs that Dr. K was thinking of putting me on. Seems strange to have a doctor who really does want to help and not just by the book. From what Marcus said wounds like I will be on a few different drugs at the same time. And possibly an immune system booster and I like the idea of that. So, once I hear back from my insurance company as to what they will cover and what %, then we will go from there and start the new treatment.

Saturday we had our Easter dinner - with family. Shannon and Dwayne were there as were his Mom and Dad - Diane and Ron and his youngest brother, Dustin. Patrick and Lisa. Meghan with Ryan and Madelynn - unfortunately, Corey had to work this year but he was there in spirit! The turkey and ham went over well with everyone! I even had my "midnight" turkey sandwich - though it wasn't quite midnight!

It is Easter today - Happy Easter everyone! And it is nice and quiet today. Sheets out on the line - they will smell wonderful tonight. Got caught up on my emails and my facebook - I was lagging a wee bit, but I am all caught up now!!

Guess that is about it for now! More once I start the drugs and possibly meet new nurses at the chemo room at LGH.

Roni

From Sadness to Happiness

Hi everyone!

Well, the last three weeks have been an emotional roller coaster for me and for my family and friends. There were lots of tears from me to say the least.

I had friends come over to visit with food and wine - I like this! My brother Donnie came down from Clearwater with my oldest niece, Elaine (she is actually older than me - ok, by 20 days!). Had a semi family reunion - my oldest sister Margaret came over with her daughter Margie and her son Tommy and his girlfriend Kim. Patrick made heck of an awesome prime rib roast! We had a great time visiting, laughing and crying.

I got set up with the Tri-Cities Home care folks - and have had two visits from them already! The woman who came on Friday is coming again April 1st - she wants to hear what happened with two doctor visits. I really don't need them yet - I have no intentions of leaving this earth for quite a while, thank you very much!!

But, now we come to my visit with Dr. Klimo this afternoon. Shannon came with me - my extra ears! After checking to make sure there were no extra lumps and bumps on me, we went into his office. He checked my file and asked what the cancer agency had said. Basically, no more they could do and they gave up on me. Well, there is no way this doctor is giving up on me! There were several different treatments he is going to try. From the sounds of two of them, one is oral and the other is a muscular injection - owie! And not sure what else he has up his sleeve. His comment to me was I was too young to be given up on and there are treatments to help. Now the downside to all of this is that some of the drugs are not covered by our medical plan, but he said he had never heard of an insurance company refusing to pay for the drug through extended medical. Not sure which one of two drugs he mentioned today is the one not covered or if these are even the drugs he is going to use! He mentioned Faslodex (Fulvestrant) and Exemestane (Aromasin). My treatments will no longer be at the cancer clinic in Surrey, but will be going to Lions Gate Hospital and using their chemotherapy department - long drive, but worth it. I went to register at the clinic and then they said they would call me about chemo teach - told her I could teach it, that I had been on chemo for over 18 months! So, will wait to hear from the hospital.

I also asked him about genetic testing for Shannon, Meghan and Patrick - he said it is a good idea and guess his office will set it up. With having so many cases of breast cancer so close in the family, it is good to get it checked! So, again will have to wait to hear back from his office.

Then it was time for Shannon and I to have lunch at the Quay in North Van. We picked up some meat, cheeses, olives, bread and a tapenade and sat outside in the sun and just enjoyed the afternoon. Talked lots and lost track of time. We wandered through the Quay and poked into some of the stores - ohhhh there were some good ones! Shall have to do that again, for sure!

I go and see Dr. Pansegrau next week - and will let him know that I have gone with Dr. Klimo. And then say goodbye to the nurses - that will be hard - they have been so good. And so has Gary - not his fault BCCA won't think outside of the box.

My friend Rae, when she was volunteering for the Olympics, knitted a whole bunch of hats for cancer patients to wear when they lose their hair. I am taking some to Surrey and some to Lions Gate for patients there. Thank you so much Rae, this means a great deal to me and especially for patients!

I am looking forward to next week. Two very special friends are coming up from the States to visit me. Carol and Mary Margaret - I can't wait. I have been friends with these two ladies for 8 years and never met them. Well, met MM for about an hour in 2003! We met through and online support group "Belly Dancers with Breast Cancer" and we have been through thick and thin together. Hope they won't change their minds when they read this blog!!!

The Olympics and Paralympics are now done! What an exciting time it was here in Vancouver and in Whistler! The world saw our beautiful city, the weather was beautiful (though at times not too great for some of the events). Canada received the most gold medals ever won - it was fantastic!! The Paralympics were so good - and the city just came alive with them as well. Everyone has their own little memory of the games and these will stay with them forever!

Thank you for all the prayers that were sent my way - I got them all - and well, it worked for now and that is what counts!

And now, I think I will go and have a glass of wine - been a very good day!

Ciao for now!
Roni

'Tis grace hath brought me safe thus far,
And grace will lead me home.

So, what is like to live with someone who is dealing with a terminal illness? To start off I can’t tell you. I can however, share with you what it is like to live with a Cancer Warrior.

She starts her day with a standard morning routine, that is to say she puts her pants on one leg at a time just like the rest of us. The rest of us head off to work, the mall, the gym or where ever. Our Warrior readies for battle…ever day.

Over the last year and a half or so she has waged a very personal war against an unrelenting disease that ravages her body. This disease knows no sympathy, no empathy, no compassion. From the get-go she was told there is no cure but it can be slowed down. Now anyone who follows this blog knows that modern medical science has not prevailed, cancer continues to win each battle. Roni has endure four different chemo cocktails, each with it own peculiar side effects. Some of these effects have been quite apparent, i.e. the loss of hair. Others are more subtle, perhaps only her kids and I would notice these changes. She has endured two hospital stays when the chemo knocked her immune system to hell and back and a one day visit to VGH to have port put in to a vein so she would no longer be getting IV needles into veins that were becoming increasingly hard to find. This ongoing battle has bloodied and wearied our Warrior but still she steadfastly soldiers on.

I have been privileged to share this journey with a woman who does not know how to quit. Roni has taught me much about courage and determination. Taking one day at a time she unknowingly inspires many of us. I’ve been kicking around this chunk granite for more than half a century and I can honestly say I do not know many men who have balls as big as the pair this woman has.

I’ve learned that when one is forced to confront their own mortality there are generally five stages:

1.Denial:Example - "I feel fine."; "This can't be happening."
2.Anger: Example - "Why me? It's not fair!" "NO! NO! How can you accept this!"
3.Bargaining: Example - "Just let me live to see my children graduate."; "I'll do anything, can't you stretch it out? A few more years."
4.Depression: Example - "I'm so sad, why bother with anything?"; "I'm going to die . . . What's the point?"
5.Acceptance: Example - "It's going to be OK."; "I can't fight it, I may as well prepare for it."

Denial never happened. This is Roni second go-round with cancer so there simply was no denial. Anger never really happened either. Previous experience has taught Roni not to waste time and energy on getting mad over something you can’t control. The energy is better invested in combating the disease. Bargaining did briefly occur but again Roni quickly realized that she had no chip to bargain with. Depression, perhaps a little but ‘happy pills’ help and the doctors are on side when it comes to the mental health issues. This not to say that Roni, or for that matter the rest of us, don’t have bad days and sad moments. We work through it and with hugs and tears… the sun rises then next day.

Roni’s primary oncologist, as you know, has told us they have exhausted their bag of tricks. The focus now shifts to quality of life rather than quantity. This where you all come in, Team Roni members all need to step up and be a friend. Phone, email, letters or cards, take her for lunch, invite her for dinner, come share some wine, join Country Dancing Boobies. Ostriches are not allowed; your head in the sand will not make this go away!! If you are so inclined, with spring coming, come and putter around the garden with Roni. Share a story, a laugh, a few tears, hugs, a prayer…we all have something to offer.

Fighting Cancer is a team sport,
Get on a Team.


Brian

Highs and Lows

Well – Vancouver has been on an Olympic high for 17 days – and it was fantastic! The streets were alive with Olympic fever – smiles on every face! And Canada rocked the world with the most gold medals ever won by a nation! It was an amazing time for everyone!

Patrick flew out on the 20^th for his training in Quebec. And a snow storm shortly followed him! Just told him, he is not allowed to send it this way. The Olympics are over and the mountains don’t need the snow! He also bought himself a nice little truck, which Mom gets to drive till he is back - maybe I will give it back to him!!!

Brian and I went to see Dr. P today. Gary can never be a poker player – his face and eyes always give him away. We didn’t get the news that we wanted or were really prepared for. The CT scan showed that the tumours were growing again – one had gone from 1.8x1.1cm to 2.1x1.6cm; another one 1.19x1.3cm - had been 1.3x1.0cm the last time. There is clearly progression of the disease as well as some of the lesions are enlarged. In a segment of the right upper lobe is a nodule which is now 7mm in diameter compared to 5mm the last scan. We talked about chemo – there isn’t much left that they can give me or that I haven’t had already. There is one, but he feels that because of how the tumours have been reacting to the last 4 chemo drugs that this one would more than likely not work – just too hard on the body. He has put me back on Tamoxifen again. I was on it for 5 years after the first bout of cancer – but then there were no tumours. Most people tolerate this drug quite well – there are lots of side effects but I only had one or two the last time and they were very minor. One of the side effects that we will have to keep an eye out for is blood clots – I had no issue with this previously. Hot flashes (now those I will want – I am so damn cold most of the time now!!). There were a lot of tears – I just wasn’t expecting to be told they were running out of options already. He is setting up for a home care nurse to come and do an assessment. This is not for now but down the road when I may need more care. Best to have it set in place rather than scrambling in a panic. Not sure how long that will take to set up. I mentioned to him that I can’t get warm and that I am tired and not sleeping well – he replied that the cancer was active and that was my body reacting to it. I also mentioned and he asked as well, that my cough was back – the bark. He listened to my lungs which he said sounded clear, which is good, I guess. No fluid which is a very good thing. I could get lucky and get another good run on the Tamoxifen – who knows!!

I think that I will call Dr. Klimo tomorrow and see if I can get an appointment with him - I have nothing to lose and a lot to gain. Not sure how long it will take to get into to see him or if I need to get Dr. Bond to refer me back to him - though it has been less than a year since I have seen him.

Right now, I am numb, not really knowing what to feel or how to react. I have talked with Shannon, Meghan and Patrick. Now I just trying to concentrate and write this blog – taken me a bit to write this amount – but that is ok, it like other things can wait. I think I am going to pour myself a nice glass of Irish whiskey and just curl up on the couch with the fire place on and then maybe the hot tub. It is going to be a fend for yourself dinner tonight!

There some good things coming up - three weddings this year. Cam and Kyara - April 25, Matt and Britt - June 12 and Leah and Colin - August 14. Good excuse to buy a new dress. We also have the Military Ball May 8 and that is always a lot of fun - means I should try on my ball gown and make sure it fits ok! I have volunteered and waiting to hear back to pour at the Vancouver Playhouse Wine Festival. And of course the Relay for Life in June.

Would love to hear from our friends – online, by phone and come on over for a visit – can make a pretty good cappuccino!!! Lunch would be fun to do as well.

All for now, my Irish is awaiting me!

Roni

Mini Update

Have a mini update!

First - good news! Patrick was sworn into the Canadian Military on Thursday - so we are now part of a much bigger family! There were 8 young men including Patrick that went from civilian life to military life in a short but nice ceremony. Brian and I were there, as were his sisters and their husbands. His Dad was there in spirit - as he is working in England at the moment. Patrick will fly out of Vancouver on the 20th to St. Jean sur Richeleau (near Montreal) - now the time sucks!!! We have to get him to the airport for 5am and his flight via Calgary is at 7. I think that is when it will get more real for me. But he is doing something that he has wanted for a long time and he will do great and we are all so very proud of him!!!

Got my check up call from one of the nurses, Olivia, from the Nursing Line at the Cancer Clinic today. Wanting to see how I was doing going back on the chemo meds at a reduced dosage. Well, some of the symptoms have started already and this has Dr. P concerned - he is worried that the symptoms will be worse seeing as they have started so early. He pulled me off the meds. So will find out on March 1st what they are going to do. I am waiting for the results of the bone scan - could find out on Monday and have a CT scan booked for the 18th. One of these days they will hopefully find a drug that works with me and shrinks those dang tumours!

Vancouver is going crazy right now - opening ceremonies for the Olympics are in a few hours and the city will be alive with Olympic fever - oh yeah, the city already is!! I watched yesterday as the Olympic flame went by me in PoCo. Was a really great feeling - being part of history and so close to the flame. I plan on sitting down in a few hours and watching the ceremonies - I bet they will be wonderful.

Will update once I get some more information - could be next week or could be March 1st.

Cheers

Roni