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

Out with 2009 and in with 2010

Well, 2009 was both a good and a bad year. Good in that we had a new granddaughter born in November – and she is growing like crazy and smiling and laughing now. She brings a smile to all 5 grandparent’s faces when they see her and hold her. Good in that Brian got work till mid January, 2010 and saved us from the poor-house. Brooke and Ryan both turned 2 this year. Hard to believe!

We had a small and quiet Christmas this year – only 13 and that included 2 kids. My three kids were here as well as some friends we have had before and a new set. Brian’s son, CW and his wife Leina and their two girls, Brooke and Ayla came over in the afternoon to exchange gifts and visit – was great to have the little girls here! And then went to Matt & Britt’s for brunch on Boxing Day and it tasted very yummy indeed – but food made by others usually does! But this really was good!

Bad in the fact that the cancer doesn’t quite know what to do. With each round, the first three treatments go great and often in the CT scan show shrinkage, but for some reason the last three treatments do no fair as well.

I saw Dr. Pansegrau this morning to get my results of the CT scan taken on the 21^st of December. My last chemo was on December 3^rd. Brian actually asked me last night what I felt the outcome would be today – and I hate being right when it comes to my cancer. I said I thought there was some growth in the tumours. He thought maybe they had just stayed as they were. Well, guess we were both right, as there was growth in some tumours – 8mm to 15mm, 5mm to 9mm and I can’t remember the sizes of the others that grew. For the most part, they had just stayed the same. Not really what we wanted but at least they all hadn’t grown. Told Dr. P that I had been very tired of late, not wanting to eat – feel hungry but once I start after three or four mouthfuls I am full. I have been dropping weight and this was noted by him as well – he said I was this weight in July, but I don’t remember looking like I do now back then. I am waiting for a call for an ultrasound of the liver – they want to keep checking on that to make sure the cancer hadn’t spread.

He talked about two different therapies – one hormonal and the other chemotherapy. I mentioned that each time Iam on hormonal, it does not work and he agreed. So, I am now starting the 4^th round of chemo – this one totally different from all of the rest. This one is an oral chemotherapy called Capecitabine, that I take twice daily – albeit each time I take the meds – I take 4 pills – so eight a day. 112 for a week and 224 for two weeks. And then a week off and two on and one off. They only give you one treatment at a time and that is fine by me – the blister packs are huge.

There are some doozy side effects – some of which I have already had and well, the others are brand new. Heart problems is a side effect and with me having the left bundle branch block and a rapid heart rate, will have to watch out for any signs of heart issues – and the nurses and pharmacist have all said, if it is going to happen, it is normally in the first 24 to 72 hours and if it does, call the nursing hot line or get to emergency. Risk of infection of course is always in the background; just have to keep an eye on my temperature which I have been the past few days. Increased risk of bleeding and bruising. I just have to remember, no cutting myself!!! Nausea and vomiting – I have meds for those. Hair loss is very rare – wahooooo – though possibly thinning. Mouth sores are a big time problem, not just. The two worst side effects are hand-foot skin reaction and diarrhea – the later needs no explanation! The skin reaction does not sound at all fun. Your palms of your hands and soles of your feet can tingle, become red, numb, painful or swollen. Skin can become extremely dry, itchy and fall off in patches or come off in sheets – yech! I need to get some good lanolin-containing cream and also some Vitamin B6 (50-150mg) per day. Brian has said not hot tub for me…. Laughing of course! And my hot tubbing could be limited if the skin reacts like they have said – I use if to relieve the pain and soreness of my joints – so rather than being in 15 or 20 minutes, could be 5 to 10 minutes.

I go for lab work on Jan 18 at 2pm and then see Dr. P at 3:40pm, to see how the numbers are and how I am reacting. Ohhh speaking of numbers!!! Neuts are 3.17, Whites are 1.75 and hemoglobin is 114 – which have come down since the last blood work – it was 124 on Dec 3. But all in all, great numbers. I don’t have all the rest of the numbers as the lab was taking so long in getting them to the pharmacy that the pharmacist just told me to go home with the meds and if there was anything strange about them, she would call me. She just called to let me know they had been found!

So that is all for 2009!

To everyone – may you have a Happy and Healthy 2010 and have lots of fun on New Year’s Eve – but do drive safe, want to see you next year!

Cheers

Roni & Brian

Last chemo of round 3 and Merry Christmas!

Hi everyone

Well, had my last chemo of round #3 yesterday. I thought it was chemo #20 but I kind of forgot how to add! It was actually round #24 - no wonder I am tired!!!

Sandy came with me again and as usual, we have a lot of fun! Did the lab work and then headed to Timmy's for a cuppa hot chocolate - and it was yummy! Sat and talked for a while and then headed to her car to get my quilt bag and my box of ornaments for the nurses and went into the cancer clinic! I ran into Whitney in the waiting area, so she got her ornament first! I got Olivia as my nurse, and of course, I have never had her, and didn't have an ornament for her (but will on the 21st). She hooked me up right away and got the premeds into my system and then as soon as that was done (20 minutes) she hooked up the chemo drug. Now during all of this, all the other nurses are coming to get their ornaments and they all loved them. 14 ornaments for 13 nurses and 1 wonderful volunteer. Dr. P's will have to wait till the 21st as he was on holidays! I go in for a CT scan on Dec 21st and then see Dr. P on the 29th. Kinda hard having to wait for the results over Christmas, but what can you do, right! Once we get the results, then shall see what will happen next. I am hoping for a month or two off from the chemo just to give the body a time to recoup. And after the chemo, Sandy and I went for lunch at one of the local pubs by my house and I had the best hamburger....LOL... it just tasted so good and nothing fancy, just a Samz burger!

The holiday season has begun! The house is all decorated for Christmas - Meghan and Patrick helped me get the tree up and decorated on Tuesday. Doesn't look too bad - if I do say so myself! Got my Christmas cards done - to mail them tomorrow! Luncheons and dinners are coming up over the next few weeks. And then Christmas dinner! That will be a lot of fun - with family and friends - the more the merrier!

On the local news last night, there was a feature on a young cancer patient. I had the opportunity to be her room mate when I was in the hospital the first time. She is an amazing 18 year old (almost 19 I believe) and when we were in the hospital together we talked and laughed - took turns seeing what we had as a meal - taking the lid off and giving it a yay or nay. More nays than yays!!! There was an article on her in the Vancouver Sun today and she will be co-hosting on the news on one of the radio stations tonight - I will listen to it! Like me, her cancer has spread into her lungs. I love her attitude - a quote from the paper - "Eventually I will pass away.....but just because I'm sick doesn't mean anything else has to change. I am just a regular person." We have become Facebook friends, so will keep up with her on there, she is a busy young lady!

My son Patrick was accepted into the military and will be joining the Navy. He will do his basic in Quebec (cold) and he should be gone by the end of January. Once his basic is done, takes 4 months I believe, he will be posted in Esquimalt (outside of Victoria) and that made me very happy to hear. He has some of his aunts and uncles in Victoria, so that will be nice for him and for them as well. Gives me an excuse to visit the island a little more!

Well, that is it for now...... have a very Merry Christmas everyone and will have a new blog on the 29th of December!

Love and hugs to all!

Roni

PS - pictures to follow - having problems uploading them to here! May not get pictures here , have been trying to load them since Friday and no luck at all.

#19 and more

Hello everyone!

A few things to report but nothing really exciting - oh yeah, just my birthday!

Tuesday was my birthday and a rather busy day at that! My gf Sandy came over for a glass of wine some wonderful cheeses. And as usual, great conversation. When I was on Facebook, I was blown away and humbled by the number of wonderful birthday wishes I had from around the world! It was great. Then Brian and I headed out for dinner to one of our fav little hang-outs, The Saint St. Grill in Port Moody. Unfortunately our favourite host, Jay was off that night, so we had Pavlina instead. And as usual - the food was great and we came away stuffed and contented.

I decided to get brave and try some acupuncture to help with the pain in my arms and such. Mila came over on Wednesday morning - and I was a little apprehensive to say the least. But after she straightened my back and neck it was ok. She injected 13 little needles into me - one between the eyes - this one is hard not to laugh at! You can see it all the time and it wobbles. One on each foot, two by each knee and three on each arm. She let them stay in for about 40 minutes and took them out. She also placed some magnets in key points - pain, relaxation and nausea. So far pain free - the neuropathy is still there but nearly as bad. The arms haven't fallen asleep at all since Wed and I love it!

Then went to see the oncologist. My regular doctor was away so met with Dr. Johal - very young and reserved -as one of the nurses said, "he is still shiny". He didn't seem to mind I had tried the acupuncture and wasn't concerned on my weight loss. Though Lesley, who took my weight and such was a little concerned - I had lost 10 lbs since seeing the oncologist the last time. No complaints from me, but guess they will keep a check on that. He mentioned that maybe there would be a bit of a break from chemo at the end of this round - which is fine with me, 16 months of steady chemo is hard on a body believe you me. But will all depend on the CT scan and what Dr. P has to say when I see him Dec 29.

Lisa and Shelley

Had chemo this morning - and Jaimie came with me. He has been a friend since we were in high school - so long time friend. We got to the chemo waiting area a little early - about 1/2 hour and Phil came out and go this patient and said hi to me and then came out again when it was now past my time to have been in the chemo lab. He asked why I was there and still waiting. Said I was there for 11:15 chemo - and he said that is not a normal time but he would check for me. Came back out and said Shelley would be my

Jaimie

nurse today and she was running a wee bit behind. Shortly thereafter, I was in Pod 4. She was busy so let her finish with her other patients and then she asked how I was doing. She was a little concerned on the acupuncture but mainly worried about infection. No problems with that. My numbers were fantastic - haemoglobin was 126, neuts were 2.15 and platelets were 2.16 so all in all pretty damn good. For a lot of cancer patients these can be considered low counts, but for me they are right where I want them. For the pre-meds going, which took about 15 minutes and then the 30 minute wait to get it all into my system and then 30 minutes for the chemo to go through and we were outta there. Will be back next Thursday for #20 and my last of this round and maybe for a few months!!! And for the last half of my chemo, I had Lisa Marie for my nurse - I met her the first time I was in the hospital and she was a student nurse!!!

Friday was my birthday lunch over at Shannon's - Meghan and her two little ones were there. And got to meet Marla, the newest puppy in the family. She is a cutie - a little crazy, but she is 3 months old. Tucker is great with her. And Ryan, just wasn't sure at time about her - same size and craziness! Chasing each other - and Marla in into kisses. The lunch was wonderful and very tasty - I even got a birthday cake - it was yummy.

Well, that has been it for this week. Will update again next week on my last chemo. Twenty chemos in 16 months is a lot and will be nice to maybe get a bit of a break and let the body heal on its own for a while. And get rid of some of the toxic chemicals which are in my body now.

All for now

Roni

What a difference a year makes

Got another fill up!

Hi there

Well, went yesterday for my usual fill-up!

Ok, I went for another transfusion! This was number 3 and then 2nd in 6 weeks. Had a wee bit more fun in the room this time, though still the youngest one there!!! Brought water and snacks with me this time which did help pass some of the time away. And had two different books - though can't remember what I read! Lot of good that does, huh. So will have to go back and re-read. I was in bed by 9 and asleep very quickly. The poor heart didn't know what to do with those extra two pints of blood - so figured it was time to shut the body down and rest and I did!

Next chemo is on the 26th so nothing to report till then - hopefully.

Madelynn is doing well - though haven't seen her since Monday.....LOL... will have to see if the family will come over for a visit on the weekend - like Sunday. Subtle aren't I!

I have put my name in for some volunteer work and have been picked for three different events. One will be a lot of fun - working for the Arts Club Theatre during the Olympics on Granville Island. Working the green room - which will be a lot of fun for sure! As well as a greeter/rover. Two others haven't really heard what I will be doing, but should be getting a phone call soon.

Well that is about all for now.

Call me, write me, email me, poke me........ I am bored people.... never hear from anyone.... seems like all my friends have gone poof. Though my FB friends seem to be around!!

Roni