How is my family handling everything?

 

Everyday I get a chance to connect personally with someone, either by phone or by email that I don't talk to on a day to day basis.  I make this one of my goals to stay connected while I feel so very out of touch with reality right now.  The most common question I get asked is " How is your family handling this?"  My answer to this is not simple.  As you know I have four children all with different personalities and lives.  Then there is Phil, this manly man in my life that is my caregiver and most trusted person in the world to me.  

In fact, it is a pretty multi-layered answer to that question mostly because there is more than one person involved. 

I will start with Phil, my husband of almost 14 years and partner in crime for 16 years.  He is now also my caregiver and has always been my true friend. He IS the strength I need ALL the time.  Even if I get frustrated, sad, mad and hate myself (believe me I do) and may seem "ornery" as he tells me, he lays next to me in bed every night with a back rub and "I love you" and "let's get you healthy."  How does he feel?  I couldn't answer that for him, what I see in him is true love and companionship that undoubtedly is never going to end.  He starts my day everyday and ends my day everyday and he does it with a calm, reassuring sense of love every single time.  That tells me he is on the same page as me, we both know I have a job to do, and we are going to get it done no matter what we have to do to get there.  We both want to be at the end of this life together.....old and alive!

 

My dear Abby, she is 14, how does she feel?  Well, Abby is my old soul who just naturally knows how to handle me.  She is the quiet observer, yet we call her the "drama queen" in our house.  Abby texts me everyday multiple times just to check-in and see how I am feeling. Her responses are always positive and uplifting even if my texts back to her are rather dismal at times.  All she wants is to get this job done because we have a life to live and this was not part of our plan!

Georgia, 11 (very near 12), my outspoken (really where does that come from?) animated and full of information daughter.  How does she feel? I would say she is taking this in stride, she too, knows we have been faced with a task and the job needs to get done.  Her Mom having cancer really sucks and it is almost a motivator to her to want to do better.  Georgia swims competitively and has applied this battle to her own life with an attitude of we are gonna kick ass, and that's what she does, every single day. With an "I love you" and a daily update of the days gossip she keeps it real for me all the time.

 

Stella bear, she's 9, is my baby nurse.  She is a natural born caregiver and just tells me she hopes I feel better every single day.  She is tender, and snugly and loves me more than I could ever put into words and she makes me feel that every time she lays eyes on me.

 

Then there is Mr. Vinnie, he's 6 now, he's just such a nice guy.  He is very curious about all this cancer business.  We have never made this scary or something he needs to be scared of, so for him everyday is like a science chat.  He has all kinds of suggestions for the scientists at the Cancer agency of how they could kill cancer without making his Mom sick, and always wants to know when my eyebrows are going to fall out. I would say he feels sad some days when I'm sick, and just like normal when I'm back up and running.  He's 6 I don't expect great revelations, what I know is every night he tells me he loves me to infinity and that's all I need to know.

 

To sum it all up, I think my family is ok.  We are that, a family and we talk about this cancer business openly and discuss it like any other topic.  We are not afraid of cancer and look at this as a detour in our family plan. 

I am grateful for each and every one of them and would not want to be any place else than home!

Things are gonna have to change....

So I'm still lying on the couch trying to keep from feeling nauseated and gross. I am keeping some small bits of food down and I am managing to keep liquids down in small sips.  It is really frustrating to not be feeling any better yet.  I am very slowly turning the corner but really not that much better.  So I have been expecting a call from Dr. Bernstein, my oncologist, because she has been out of town and I knew she was going to want to talk to me about the future of my treatment based on the last episode at chemo with another allergic reaction.  So the "call" came today.  Dr. Bernstein said she literally had just got back into town and the first chart she had on her desk was mine. OH GOD, I thought inside.  I knew from the first time that she had said that they may have to stop the protocol if I had another reaction, and in fact that is almost what she said she wanted to do.  She had already emailed a whole bunch of other oncologists throughout the province that she was trying to collaborate on what the next step for some form of treatment for me should be.  She said more than one time, that she is very concerned about me having these anaphylactic reactions that are too risky to keep administering these drugs.  The other side is, she does want to see me receive some more chemotherapy of some kind to benefit from the efficacy of the herceptin with the standard chemo drugs. 
So I have an appointment with her on February 18 and by then she will have some other options that she thinks will be good options to keep me on some chemotherapy and the herceptin.  It sounds like I will have to go weekly now to get treatment and all of my medications will have to change that go with the treatments. ie. no more neupogen or anti-nauseant drugs.
We will have to wait and see.  For the meantime, I'm just trying to keep from feeling like barfing all day!  I hope to have more upbeat updates soon! x0x

I'm down and out.....

Me with the Cryomits on to prevent
my fingernails from coming off

Well it has been a rough few days to say the least. I'm sorry I haven't been well enough to even post a sentence to say I was down and out.  It started on Saturday 2 days post chemo round 2.  I just felt so lethargic and gross that I couldn't even get out of bed.  I don't ever lay around and hate wasting a whole day in bed, I like a good sleep in, but I literally was in bed all day.  I had a bath or two just to have a change of scenery and sooth the general malaise feeling, I just couldn't shake the lethargy.  It ended up turning into full blown nausea by about 2:00am and I was wanting to throw up but had nothing in me to get out.  So by 8:30am I had had enough of this death feeling and decided I needed to call the medical oncologist on-call.  The fact of the matter is that you are not supposed to feel sick at all while going through this.  They have repeatedly told me this, so I have no qualms about calling for help when I'm just done.  I knew I was seriously dehydrated by this point and would need some fluids and probably some anti-nauseate medication that could be given IV (via my handy dandy porta cath.) Dr. Coppin (I think) called me back right away and had me go up to VGH for IV fluids and meds right away.  He called them to let them know I was coming, and was a chemotherapy patient and needed attention asap.  Phil got me up to VGH by 10:30am and guess what we walked in behind in emerg?  You guessed it, the prisoner from Wilkinson road jail who was chained to his wheelchair, looked less than a desirable character accompanied by two huge jail guards.  Are you kidding me? It's really a time like this that I think the world is just not fair.  He was there for his stab wound that had become seriously infected, and I'm there because of my chemotherapy riddled body that is almost giving out on me. Where's the fairness in that?  Oh well, I proceeded to lay across 3 waiting chairs and Phil's lap because I could not even sit upright from the dizziness and nausea.  All the while being overlooked by the prisoner who seemed all to interested in what was wrong with me.  Of course that's how it would happen there always has to be a little flare in my life! So five hours on a stretcher in emergency at VGH with a nurse who I knew from my 4 west days 2 litres of fluids and a cocktail of anti-nauseate meds and I was sent home. Auntie stayed with me the whole time while Phil went home and dealt with all the kids. I still felt shitty not really any better actually, but I knew I was hydrated at least and could maybe come home and sleep in my bed.  Oh ya, I started the neupogen shots the day before and I seem to be tolerating them ok, so I had to come home and inject those bad boys too.  By 22:00 I was beside myself and I have some IM shots of gravol so I had to call in reinforcements (otherwise known as Alma) and called her to come over and give me a nice shot in the ass to get me through the night.  Thank god she did, I think that's what helped me turn the corner, somewhat.  I slept, had crazy dreams mind you, none the less I slept. I woke up still nauseated but not trying to vomit anymore, so Phil got me up and showered so I could feel somewhat like a human being.  I have no energy even showering is like running a marathon, it's unbelievable.  I spent the day resting on the couch, I ate small bits of food, had Kraft dinner for breakfast, and my god send Rhonda who cleans my house came and cleaned up and changed my bed sheets and made me something to eat.  I had a nice visit from Diane and Laura and baby Anderson for a couple of hours in the afternoon. They brought the best homemade chicken & rice soup with homemade bread.  It was a nice break from the long days of feeling so sick and gross to have a couple of visitors for a while. I have to mention that we have had an abundance of people dropping off meals that are just fabulous.  We have had to freeze some of them as Phil is having a hard time getting through serving all of them.  It is just so kind of people and we can not express our appreciation enough. So the gist of this is I'm sick and tired of being sick and tired and hopefully I'll turn the corner soon enough and be back on track in the land of the living. x0x

Chemo Round 2!

Arrived at the Cancer Agency for 10:30am today. Phil and Abby came with me and Auntie was going to stop by around 12:00pm to see how I was making out and give Phil a break.   I was in fine form, just a bit sore from my port a cath insertion.  I have 2 incisions one in my neck (it's kinda like a puncture, you know ice pick style!) and the other is the actual port a cath.  Dr. Hiayashi set it all up to be ready to go and boy oh boy did it ever work like a hot damn!

Abby and I

Auntie and I

Sandhu and I

I was up and running within minutes of arriving and had the herceptin run first.  They ran it over an hour and then I had to have a 30 minute observation period. All went well and I felt fine. I ate some lunch and on to the cyclophosphamide.  They could have run this over 20mins but last time I got this funny nasal congestion and head zingers as I called them so they ran it over an hour instead to try and alleviate those symptoms. It seemed to work because I didn't have any symptoms.  The goal is to have no symptoms so things were going smoothly.  I had some guest visitors Kimberly came to visit she works over at the Jubilee and Sandhu stopped by too.  It was nice to pass the time and see my good friends.  Auntie came by too, but didn't stay too long as apparently I was quite popular and the chemo room wardens would only let me have one visitor at a time. Rules are rules I guess.  So they started the docetaxel last.  If you remember, after the massive reaction that I had last time they reduced the dose of both the cyclophosphamide and the docetaxel to 80% of the protocol as to alleviate me having another reaction.  They also front end loaded me with IV doses of benedryl and dexamethasone to try and combat any reactions.  I was quite dopey and comfortable and Abby came to sit with me for a bit, the drug was going to run over an hour.  I started to feel my tongue get funny and thick and didn't say anything for a couple of minutes to my nurse.  I finally decided I should say something and she came over and I was laying right back in my chair.  I had told her that last time it wasn't until I stood up that the reaction set in so we decided to sit me upright to see if it was a true reaction........and BINGO then it started....another full blown reaction with shortness of breath, chest heaviness and thick tongue.  OMG!! I couldn't believe it. So out came the big guns, curtains closed, nurses everywhere, doctor flying into area, holy crap not again!  So they fired me full of more IV benedryl, gave me a ventolin nebulizer that I breathed in, and some hydrocortisone IV.  If you wanna see dopey that was me!  It settled down within 15 mins or so but very scary. As soon as it started happening Abby jumped up and ran to get her Dad, she was ok just worried but her Dad kept her calm.  My biggest fear is they are going to want to stop the protocol and I am not going to get to have the full benefit of what I have started!  I'm in it to win it now, so I want to finish!  I'm half way through the roughest part I got to get through this.  Who would have ever thought I would have been begging to get chemotherapy?  I will see Dr. Bernstein my medical oncologist on Feb 18 to discuss all this, she is out of the country right now at a conference over seas, so I imagine she may even call me when she gets back. I am confident we can work something out but I am not willing to throw in the towel yet.  Come on body don't fail me now!
What was really nice was after 7 hours at the Cancer agency we came home to Monique and Doug having pizzas ordered and we had a nice dinner.  Then we decided to shave my head biker style!  My hair was falling out and as I called them, they were like shards so I decided to take control and not have little hairs everywhere.  Monique started the process and then my fellow baldie friend did the honours of the close shave with the razor!

Doug and I

smooth as silk

x0x

Port a Cath is IN!

I had to be at VGH for 11:00am.  Auntie picked me up and we were there jolly on the spot!  My surgery was for 13:10 and I had to check into surgical daycare.  You know what having a surgery at 13:00 in the afternoon means?  I was STARVING! I hadn't eaten or had no fluids since 24:00 last night.  I was almost ready to eat the furniture, and all I could smell was the nurses heating up their lunches! They all smelled like a roast beef dinner!  So I text Phil a suggestion list of what he should bring for me to eat when he picked me up. He thought I was crazy but didn't argue :)
I had a lovely nurse Theresa, very thorough.  She called the anaesthetist in the O.R. and asked him to order my same pre-op meds that I had for my breast surgery that kept me from barfing afterwards! She was great!
Auntie stayed with me, we read the port a cath information manual and used our funniest German accent to recite it...as the port a cath acronym is SVAD, which we thought was very German sounding so that's how we read the whole manual!! LOL We didn't realize there was a lady next to us behind the curtain, she must have thought we were nuts!!  I sent Auntie on her way around 12:00pm so she could go have lunch with Uncle. 
I managed to doze off for a bit and to my surprise I was woken up by an old clerk friend of mine from 4 west at the Jubilee. She is the clerk in the O.R now and saw that I was in for surgery and knew a little about what was going on for me in this last while so she stopped by and we had a great chinwag!  A good way to kill some time.  Even though I work at the Jubilee it's amazing how many people you still know at other sites. I knew the lab gal, the admitting clerk, and the O.R. nurse and clerk. You can never hide when you work in healthcare! LOL It's ok though people are so uplifting and have such kind words of encouragement and it is an almost camaraderie that I feel. 
They didn't end up coming to get me until 13:40 they were running a bit late, so I headed upstairs to the O.R.  I was very popular when I arrived....the anaesthetist (Dr. Terry Murphy, lovely)  arrived to have a chat, then Dr. Hiyashi came to have a chat and the O.R. nurse had a flurry of questions and then I sat and waited some more.  I got wheeled into the room and slithered onto the metal slab and got a special pillow for my head and then the dreaded IV needed to be put in so I could have my "free sleep" as I call it.  It went it with no issues and it wasn't much longer and I was drifting off.  I woke up in PAR with no pain, just a really sore neck.  They have to puncture a hole/slit in your neck and then put the catheter in your chest some how that all goes together.  I'm sure they have some choice positions they put you in and thus the sore neck. 
I feel sleepy and am going to head to bed with some pain relief and ice pack.  I'm ok though and will go to chemo tomorrow.  Dr. Hiyahsi has left me all set to go for tomorrow.
Here's the damage:

Good deals are just the best!

I love a good deal.  I think I can say confidently I am the deal Queen!  It doesn't matter the amount of the deal, a deal is a deal. I also love to share a good deal story.  Often the deals happen at the grocery store, because sadly, that's where I do the majority of my shopping. I wish it were at Aritzia or somewhere nice like that. 
Today was a little different, I had to go to get my scrub sponges to prep for my surgery tomorrow and some gravol for chemo time, so thus, I headed to the drug store. I didn't need to venture to far from home so I went to the Broadmead Pharmasave. Now I don't know if you have ever been there, surprisingly they have the best stuff! Purses, scarves, hats,beautiful makeup, lovely things for your home decor and if you look around you can get a good deal....
*The backstory:  My friend Kimberly came to visit (may I mention with her adorable french bulldog, Houston) my first week of chemo, it was a Sunday and we were just hanging out in our sweats but all I kept saying to her was "You smell so good." I don't normally smell people or have a nose for a good scent or perfume, but she smelled great. It was Juicy Couture perfume.  I don't wear perfume or scents, I think the last time I wore perfume was when I was thirteen and it was some vanilla scent from the Body Shop that made me feel like I was in an ice cream parlour all day.


The Deal
Those shiny ones look like condoms, they are the bubble bath samples:)

It's probably some weird "chemo brain" fixation I have been having but none the less I have thought about this perfume for 2 weeks.  So today while at Pharmasave, after having the greatest time with my new best friend Emma the cosmetics girl, I bought new foundation (The Balm) and lipsticks and mascara (for the last days that I have eyelashes), and then I came across "the deal!"
I had been hesitating finding the perfume to purchase it because I was anticipating a large price tag, and that it has $120 per bottle. My deal, a gift set of Juicy Couture perfume, body sorbet and bath gel all for $55.00 (regularly $90!) I was so excited, I have absolutely no need for this but bought it instantly!
It was so much fun, I spent over an hour in the cosmetics department of the Pharmasave, ran into a gal I know from my neighbourhood, picked out all this new makeup and got a great deal!  I also got freebie gifts, because remember I have a new best friend now, and she gave me vitabath bubbles and cosmetic bags (which aren't in the picture because they have already been claimed by the "who's that for?" teenager!) The best part I only need to spend another $20 and I get $20 gift card because I signed up for some Pharmasave club.

So I spent the morning at the Cancer Agency for my check in appointment, then went up to 4South for a quick visit with the gals, and had a nice coffee with the "smelly one" Kimberly.

It was a nice day to head into the next week or so for what is to come. 
Port a cath tomorrow, chemo Thursday.
x0x

Gearing up

So today was the last day before my week gears up to the second round of chemo. I had a nice day, Abby is off for exam week and we went out with Auntie and my cousin Jennifer for lunch.  We had a fairly non-eventful weekend and just stayed close to home and had a nice visit from my BF from Nanaimo.
The gearing up week starts tomorrow with a trip to the BCCA for an appointment with Dr. Battershill (GPO)  for my pre-chemo check in and to get my bloodwork done and assessed to be sure that my system is ready for another jolt.  Wednesday I will go in to the Victoria General Hospital for my port a cath insertion by Dr. Hiyashi.  It is done under a general anaesthetic, it should only take about an hour or so and then recovery time and I will be home by dinner most likely.  Thursday is the big day! Round two of chemo!  The anxiety has slightly started to kick in thinking about what is to come.  I have been told every round is different and I have been given lots of tips on how to try and make it the best possible, the most important one is I need to drink lots of fluids before, during and after the chemo. 
I start the dexamethasone (steroid) drug on Wednesday, so I will be up all night for the next 2-3 days after that, so I have got some good sewing projects lined up and will probably do some more food blogging too. 
So overall the last 8 days have been pretty good ones.  I am on a 21 day cycle and hope that I have even more good days on the next round.  My hair is starting to fall out now, from everywhere, not just my head!  Amazingly, the hair on my head actually grew back a great deal from when I shaved it 3 weeks ago.  Here's hoping it grows that fast when I start growing it back permanently!  I will be posting more frequent updates around the chemo days.
Happy Monday to everyone, I hope you had an enjoyable weekend and a great week to come. Thank you for all the positive energy and think of me on Wednesday and Thursday especially this week, I'll take all that love and use it to power through!
x0x