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

Nasty Side Effects

So, it has been interesting the last few weeks with the chemo drug. It and I just aren’t seeing eye to eye! It has been giving me lots of side effects and at times they are quite painful. The hands have been red, hot and swollen. The finger tips will feel almost rubbery at times and then at other times they are very cold and will have a pale blue hue! Nausea has been quite nasty, sometimes the meds work and sometimes they don’t. The feet have been picked on the most by the drugs. Very tender heels and the balls of the feet. And blisters – holy crap! Remember when you got new thongs (flip fops for the younger generation) and you always got a blister on your foot. Well one maybe would be ok – but had 4 and 5 on each foot – between the toes! Ouch. And the temptation to break the blister was so there, but I was good and left them alone!

Phoned the nursing line three times – which I have never done, and the nurses are so good and of course they are ones that I have had in the chemo room. Had Trace on Thursday and he said not to take the evening pill and if still felt the same way on Friday, not to take the morning pill and phone into the nursing line. He also said to stay off my feet as much as possible and to not do dishes – now that one I liked!! I did have to call, and got Shelley – she listened to what I had to say, and said she would go and talk to Gary and call me right back. Oh I would say less than 4 minutes before she called me back – Gary had said to go off the drugs and would see me in a week anyways. Gary had said that once the side effects started to affect my daily life, then off the meds. Monday phoned in again and got Phil and he said just take care of the feet and the hands.

Friday was blood work day and a visit to see Dr. P. Brian and Patrick were both with me. The gals in the Medical Day Care are great – funny and caring. Though had one nurse who was from Royal Columbian and I swear she was an older Heidi – hair pulled into two buns on each side of her head!! Gained 1 kilo – I wasn’t too happy with that – most women will agree with that – we like the scale to go down not up! Gary said my numbers were good – within range – though my tumour markers were up to 257 – and he didn’t seem to be overly concerned, but it will get watched for sure. He asked how I had been since going off the meds a week ago. Said it had gotten worse (which I was told by Shelley) and that the feet were very sore as were the hands. He checked out both. I told him that I was not happy with the drug at all. He said I could quit I right now or try and see what it would be like at ¾ strength. I would be taking 6 pills a day rather than 8. He also said I had the CT scan coming up and then we would see if there was any shrinkage in the tumours. If not, then possibly do another drug cocktail. Patrick asked him about my memory loss – lovely child!!! I said chemo brain. And Gary agreed – they don’t know why chemo brain happens. And Brian mentioned my light headiness. Gary asked how often it happened and how long it took for it to go away. Another thing to keep an eye on. I had good heart and lung sounds – I like that. He gave me a new Rx for anti-nauseau and I have had them before.

I am having the bone scan on Tuesday and asked him if I was going to have to wait 3 weeks (that is when I see him next) to get the results. He said that those scan results take a little longer, but I could call him on Friday or Monday and ask to speak with him. He said he would call me back with the results. Which will be just fine, thank you very much! I am a little impatient when it comes to getting results!

Went out to the waiting area as we always do, when one of the chemo nurses, Olivia, came over and sat and talked with me about calling the nursing line, just some tips on handling the hands and feet. Then she went away and then came back again – said that Gary was only giving me 10 days worth of the meds and that someone from the nursing line would be checking up on me – so getting a weekly call from them. Then out comes Gary – this never happens!! Just backing up what Olivia had said. Went and got my meds from the pharmacy and will see Gary on March 1^st.

Went to my Women with Metastatic cancers group session on Wednesday. It was pretty upbeat for the most part, had a new gal join us which is nice to see. Some of the other women who hadn’t been for a bit were there and we had a lot of laughs this week and less tears. We may cancel the next meeting as it is during the Olympics and well, it will be chaotic around the cancer clinic!

Had fun working in my garden in the front the other day. Meghan and her kids were over. So Ryan who is 2 ½ helped us too! I moved him to the other side of the garden and gave him a little shovel and he moved dirt around! Managed to plant bulbs in two large planters (with the much needed help of Brian!). Meghan is good at working in the garden – so she cleared out a good amount of the weeds that had sprung up with our spring-like weather. And we planted a bunch more bulbs. These were bulbs that should have been planted in the fall. Oh well, better late than never!! Once I finish this blog, shall go out again – it is a beautiful spring day here – yeah, I know it is still winter, but tell Mother Nature that.

Seeing as Patrick will be leaving soon for basic training, we had a “Mug-Out” for him at one of the local pubs!!! He had a great time, though I think his head hurts just a little today!! Brian presented him with a boson’s whistle – which he will so get used to hearing once he is onboard one of the ships. And of course no one took pictures of this and there were a few cameras around. Everyone had a great time – think there were about 25 people there – we took over the entire patio at one point! Was nice seeing some of the kids he went to school with, his cadets friends, relay friends, family friends and most importantly, family – Shannon and Meghan were both there. His swearing-in ceremony is on the 11^th and he flies out on the 20^th. Will be quite in the house with him gone.

Think that is about it. No – that is not all! Brian is officially a Commissionaire – looked quite dapper in his uniform when they took his picture for his licence. So may not see much of him during the Olympics – with him working and me volunteering as well.

The Olympics start on Friday and everyone is getting excited – we just want some more snow on the local mountains! And our Canadian athletes are going to do Canada proud and bring home some gold!

That is all for now. Next posting will be March 1^st unless there is something thing oddball with the bone scan and don’t think there will be anything. And will tell you about my volunteer stuff that I will be doing during the Olympics – it is going to be fun!!

Go Canada Go!!!!

Good Start to 2010

Hope that everyone had a great Christmas and New Year’s! We had a very quiet New Year’s!!!! We were both in bed by 10:30!! What can I say, we were tired. We did go out for dinner with family - Brian’s nephew is a Dec 31 birthday!

Well, have been on the new drug for two weeks and then one week off. Have had lots of the side effects – nausea, diarrhea, redness and swelling of hands and starting on the feet (at least no skin peeling or coming off!), more headaches and stabbing pain in the head - Dr. P wants to keep a check on this. Some lower back pain, but this could be stress. Been using Badger Balm for my hands - they get extremely dry and painful - and this helps big time - smells good too!

Had my blood work done today – and the one thing with not seeing the chemo nurses, is that I don’t get my exact numbers! But Dr. P said they were in the normal range – my last set were dropping so, will just have to wait and see – I can always get a copy of the report. Gave him my list of aches and pains. I had been wheezing a bit last week – Friday I believe – and had to use the inhaler. He listened to my lungs and said they sounded ok, but would keep an eye on this. He is sending me for a bone scan just to make sure that everything is ok. Also setting up the next CT scan which will be after treatment 3 which will be 6 weeks from now. Weight has gone down again, but he doesn’t seem too concerned (and neither am I!). We discussed the compassionate club and I will have to go online to find out more info – the BCCA does not say yes or no regarding this, but if a patient wishes to try it, the doctors will say yes. Would help the nausea and possibly help with the appetite. And of course, this is not covered by medical – LOL. There is also a pill that has the main ingredient of marijuana and agency will give that to you – to help control nausea and vomiting. So, out of curiosity - what do you think about the use of pot for helping pain, nausea and the like? Or do you think the BCCA's pill would be better?

The abdomen ultrasound was good, no real change. There are still the cysts on the liver and on the kidney – so will probably get another one done around the time of the CT scan.

I asked him how many tumours I actually had. By that point, he didn’t have my file handy – so he couldn’t remember. But he said after 3 or 4 tumours, they really don’t count – they look at the size and density. We just know that there are lots of them in both lungs – more so in the right one as well as having the larger ones. I would just like to see a copy of the ct scan or lung xray just to see - and throw darts at it!

Then had to sit around an additional 30 minutes to get my medication. Why is it in doctor's offices you wait for ever and for perscriptions at the cancer clinic!!! So it was 5 by the time we got out of there – I had been there since 2! But at least I got to visit Samantha, who was in having her chemo today – was a short visit, but that is ok – we talk all the time on Facebook! She is such a remarkable young lady and has gone through so much and is still has a powerhouse of energy!

So that is it for the medical update – there is progression and we will deal with it as it goes along. The cancer just has to remember who it is up against! And I will not back down!

On another note, I know that people are reading the blog, we have a counter – but so few reply. I have heard from people they don’t know what to say. Hell with the cancer – tell me what is going on with you! Some people have clued into this and I think it is great to hear about a baby getting his first tooth or walking, weather where you live (and for some of you it sucks!), what you are doing for holidays. Anything – just say hello.

Same as giving me a phone call. I would love to hear from you – some of you I haven’t heard from in a year – I have had to call you instead. And the same reason comes up – we don’t want to bother you, don’t want to upset you or don’t know what to say - same thing applies. Or come on over for a cuppa tea or a glass of wine – I can still have wine, just drink smaller amounts. You can always find me on Facebook too!

Brian has started a new job which is great – finished his contract on Wednesday last week and started on the Thursday! He and I will not see much of each other during February with the Olympics! He will be busy with his work (Commissionaires) and I will be doing two volunteer events. I will be driving for Molson House/Hockey Canada and being a roving greeter for CHMC Granville Island. Sounds like it will be a lot of fun! Hmmmmm – wonder if I will get to drive around any hockey players!!!!

My kids are all doing great! Shannon is back to work after having a relaxing month off - need to ask her how yesterday was! She works so hard at her job and is passionate about it!Meghan and the kids are doing fine - they are actually on their way over here for a visit. Had to believe Madelynn is 2 and a half months already. Patrick is getting ready to set off to his new adventure. He will be sworn into the Military on the 11th of February and then off to training on the 20th. So, what do you think of that! Or what do you think about my son joining the military - we are all very proud of him.

All for now – next blog will probably be February 5 when I go back to see Dr. P.

Hugz to all

Roni