Long Story, Short.

So much to tell you about my weekend in Saskatchewan with some of the best friends a girl could ask for - but no time right now.
Just wanted you all to be aware of the fact that once again, we got some pretty discouraging news today from my surgeon. I went to see him for what I thought would be a routine, regularly-scheduled follow up appointment. Unfortunately, he had already received the preliminary findings from my recent CT scan and they were anything but positive. The tumors on my liver have been growing and multiplying and spreading to my lungs. This was not a huge shock for me, because I am pretty aware of my body and I have been feeling pretty awful lately. It really was more of a confirmation about what I knew in my heart of hearts was happening. That however did not make it easier on my Dad, on Tim, on Chantelle or Kris or Mar or Parch or Nance or (I suspect) Pam. It's been a tough day all around and I just wanted to recognize those of you that have been so present and strong for me in this battle. I couldn't possibly ask for better people to have on my side and at my back. And every single one of you made me smile or laugh until I cried today. That in itself is a damn miracle. I love you all.
Will right more when time permits. Do me a favour though and don't ask about next steps because I haven't figured that out yet. Tim and I have to consult with the onc's ASAP and we won't know much more until then. Just know that we are not about to give up - there are other treatment options and we will explore them all.

A Few Thoughts...

Hello Everyone,

Once again - sleepless and on the sofa with a heating pad on my back and a burr in my saddle. (Been a little grumpy b/c of the way I have been feeling lately.) I have just been so sick since starting this new cocktail and I can't help but wonder - is it the chemo making me so sick or the canser spreading? I am fighting the back pain and abdominal pain, but along with that comes an upset stomach, bloating, gas, alternating constipation/diahrrea/and nausea whenever I eat. I have heatburn all the time, my esophagus hurts when I swallow anything and I have stuff going on at the back door that no one should have to deal with.

My mouth is full of canker sores and I have been having nosebleeds that almost end me in emerg. I feel like my liver is so inflamed and swollen, that it has to be the canser. Add to that that I just read a stupid on-line article about the inevitability of chemo resistance and that there are new miracle drugs on the horizon - that won't be out for a decade and it just all kind of sucks the life and fire out of me. I haven't slept more than 4 hours in a row in almost two weeks and it is taking a toll on my mood and my ability to cope with the side effects, so I've had to start taking anti-anxiety meds more regularly.

Tim is so worried about me that I am worried about him. Not to be a downer - I just wanted you all to know why I have been incomunnicado lately. BUT, yesterday was my first good day (for the most part) in a very long time, so I am hoping to tag on another few feel-good days before chemo again on Tuesday.

Anyway - I wanted you all to know that I am heading to Saskatoon on Saturday for a CT scan and what I expect to be my last chemo treatment at the Canser clinic there. It has become too much of a burden, physically and financially for me to get my treatments there when they are no longer covering Avastin for me. There are also other contributing factors - like the fact that one of my two oncologists there suggested testing my initial biopsy results for a genetic marker that would indicate one treatment option over another - in JANUARY, and I have still heard nothing about it. He is also the one who promised to try to get me covered for Avastin - and I've never heard from him again. The other doc, though nice, is terrible at getting paperwork done when I need it for insurance purposes and so on. Either he just doesn't bother doing it or their medical records people "misplace it." Meanwhile, I take a form into Dr. Chouinard in Cambridge and it is ready two days later - with no eye rolling or sighing involved.

I also intend to put my condo on the market while there, so if anyone knows anyone who wants to buy a gently-used, single owner, two-bedroom townhouse style condo in Arbor Creek with central air, central vac, two owned parking spaces and a partially finished basement - let me know. ;-)

I have been feeling particularly overwhelmed lately - so much to do and feeling pressure to get it all done.  All I want right now is to be in a new house with Tim, one where we have the freedom to enjoy a nice backyard, for BBQ'ing, reading, gardening, relaxing and dare-I-say, entertaining?  This will not be a quick or painless project, but I look forward to getting it underway. 

The other top-of-mind issue is the wedding(s). I will have my dress on the first of May, but it is almost impossible to book anything AND gauge how I will be feeling when the time comes. The last thing I want is to be miserably sick on my wedding day. It keeps me awake at night.

Wow, I am just FULL of sunshine and roses, aren't I?  I need to stop taking all this stuff so seriously and go sit on a patio somewhere and have a few cocktails - maybe that will cure what ails me. Did I mention it was +24 in Cambridge yesterday? Ha! But so windy I almost blew away and it rained in the evening so we couldn't go out on the porch and enjoy it anyway...and apparently we can expect snow tonight and tomorrow morning. Weird.

That's it for now - either time to try to nap or give up and have a coffee...maybe both.

Talk/see you all very soon.
BJ - out.

#32 Update

Well Folks,
It's been a while since my last update, so here I am.
Chemo #32, so far has been easier than the last. I convinced my doc to give me the full dose of Atropine, so my worst side effects on Day 1 were fatigue and hot flashes. Day 2 and 3 were ok, relatively speaking...and Days 4,5 and 6 were each their own little slice of hell.  I am getting very tired of sleeping in 4 hour intervals. I am extremely tired of all the nose bleeds. And about to lose my patience with my guts. Looking for a better day today.
Good news is the Masters was very exciting and hopefully I am on the up-swing.

There's a Wolf in the Hen House...

And just like that, the weekend is over in the blink of an eye. It's been a while since my last post and I'm not sure where to begin. As I mentioned earlier, this new treatment is no picnic. I have been experiencing a lot of abdominal pain, bloating and nausea. Now this is all new to me because the one positive thing I have been able to say over the last year is that I haven't had any real stomach issues at all since my bowel resection. Lately, not so much. Every time I eat, I bloat out to look like I am about 6 months pregnant - not overly attractive on a 5 foot, malnourished and underweight girl. I am hoping it is something that can be treated as a side effect of the Folfiri and will ask tomorrow during my appointment with the oncologist. The other issues these past few weeks have been continuous and constant back and flank pain. Two weeks ago the doc thought it was worth a try to put me on Gabepentin for the possible nerve damage in my back from my surgery and a daily dose of Decadron to take down any swelling of the tissue encapsulating my liver. Unfortunately, I received no relief and started suffering from too many side effects, so I stopped taking them on Saturday. I have to say, I haven't felt this awful for this length of time in a long time. It's not great for the psyche - makes you wonder if the canser is advancing and plowing through my abdominal organs, if I am having a negative reaction to the new chemo, if all of my numbers are elevated because the tumors have become too much and my liver is shutting down...sigh...one never knows because the doc's won't give their real opinions until they see a CT scan. And they don't happen very often. The one positive that came out of last week though was that after getting the go - ahead from my doc I finally booked a massage - and it may have been the best one I have ever had. The fact that for three solid hours after, I was pain free for the first time in ten days, gave me hope that a lot of this pain could be muscle - related. My chiro has been telling me all year that my body is having real trouble staying aligned because of all the scar tissue in my abdomen - he works on breaking it up every time I see him, but it's been awhile since I was in Saskatoon last.
The truth is the past few weeks have been pretty dark for me. It's tough not to read too much into these side effects when they go on and on with no relief. And remember, I have an idea of the natural progression of these things and what to watch for after experiencing my mom's decline when she was sick. There have been nights when I have been convinced I wouldn't see another Christmas, let alone another birthday. And poor, sweet Tim has once again been taking the brunt of my fears. He's such a good man - understanding, empathetic and forgiving. Not sure what I would so without him...

Happy, Happy Birthday Darlin'!

So, enough of the negative stuff - let's talk about the adventures the Bender family had this weekend. On Saturday morning, Tim and I took the kids to the Sugarbush Farm at St. Jacob's market. And Man, was it cold outside...but we got to take a horse-drawn tram/carriage to the farm, learn how sap is collected and treated and then we had pancakes and maple syrup for lunch. And let me just say, Avery ate her weight in pancakes - I've never seen anything like it.

Saturday night we went out to Tim's folks for a combined birthday supper and WOW! Barb Bender knows how to cook! We were both so full that we had to unbutton our jeans on the way home. Speaking of the way home, we saw in a farmer's field one of the coolest live action wildlife events I have ever seen. Picture it: 4 deer in a clearing - tails straight up and at the ready...and when we looked over we knew why - there were at least two wolves on the opposite side of the clearing that started the chase right before our eyes! So cool. The girls made it into the thick foliage of the bush and I am secretly hoping the wolves went hungry last night.

Today the kids and I took Daddy out for lunch for his birthday and then had cake and presents and balloons at home. I think overall, it turned out to be a nice day for him - and that's all we can ever ask for these days, isn't it?


 

Checking In...

Hey Everyone,
Just a quick note to check in and to apologize to everyone for being a little hard to reach lately. It's been a rough week since getting back from Jamaica - and I have every intention of getting back to all of you (hopefully this week).
Thinking of you all...

#31 and FOLFIRI is Kicking my Ass Again...

Yikes, what can I say but someone must have found it an amusing little gag to convince  me that FOLFIRI would be a cake-walk compared to FOLFOX. Wrong,wrong, on so many levels wrong. They continue to be stingy with the Atropine and I am left with hours upon hours of stomach cramps, sour guts and internal gas. This is all very new to me since I have had very few problems with my guts since my surgery. Add to that the newly sparked back pain (which may be lingering nerve damage from the botched epidural I had last year - my doc has put me on gabipenton to try to alleviate the pain, but it could take several weeks to work. Next question - is my liver swelling as a reaction to the new chemo, or worst possibility of all, is it advancing?  Either way, she has seen fit to put me on a regular dosing regime of Dexamethasone - which will like cause weight gain and moon face. Add to the the anti-cholinergic side effects like dry mouth and dry eyes and it makes for a very sick, tired girl who is no fun at all to be around.  All very interesting concerns that the sooner the better we can get figured out will be nice. The pain and the unknowing is driving me slowly insane.  Unfortunately, my next CT isn't booked until the third week of April, so I need to get used to being in the dark once again.
As a result of all these things, I am getting very little sleep, so here I am!

I am looking forward to giving you the down-low on our trip to Sandals Whitehouse in Jamaica. We left on my birthday after spendng a great evening with Andy, Pearl, Juston and Marta the night before our flight. That means we got to fly on my birthday - in first class, mimosas and all. It was a very nice treat that we don't engage in very often...

Mimosa and a touch TV screen with remote? The man was in heaven.

Getting ready to board

More mimosas...and the blankets and pillows were a welcome sight as well.

Thank you Air - Transat for the best flight ever.

The trip itself was magnificent on all accounts - the weather, the accomodations, the food, the entertainment and the staff were all incredible.  

The view of our room from our favorite pool location where Tim could play pool volleyball to his heart's content:

And dominate, he did...

It is our dream to own a nice hammock one day - love it!

Breakfast on Day 1

We took daily walks along the very long beach front...

The water was so shallow, warm and the loveliest turquoise color you could imagine.

Add caption

Don't think they liked our attention but...

We made some friends along the beach..

Tim got to meet Bob Marley...

Had a tour of the grounds - complete with my very own bouquet of all the flowers...

We had some lovely meals - dinner at Jasmine's

Tempura and Spring Rolls

Fresh rolls

Dinner at Neptune's

I had the smoked  pork

And Tim had the tuna steak

We spent our evenings playing pool, ping pong and

shuffleboard,

Enjoying a few bevvies...

We became huge fans of the Lychee Martini

Tim surprised me with a private candlelight dinner on the beech at sunset - it was the most amazing romantic night ever...

 We had an amazing night and a glorious sunset - best birthday gift a girl could ask for!

The next day we took and excursion to YS Falls where we were able to do some zip-lining and swimming in the falls:

Geared up...

My first jump...

Third jump - longest, fastest and bumpiest - SO FUN!

Tim's final jump.

 And then off to the waterfalls...

So friggin' cold

Warmer on his lap

Tim jumping into the falls...

 

So beautiful

 Best holiday of my life and I can't say enough good things about it!

One More Sleep...

 
Hello All!
Things are looking up! Had a great mani/pedi yesterday and the good news is that I feel like a Girly-girl again! Yay! Thanks to Nancy for surprising me with a pedicure - on her - for my birthday. What a Sweetheart. Nothing makes me feel prettier than a french mani/pedi, well....except newly highlighted hair, but I can get over that.

The not-so-good news is that by the time I got home I was so sick I could barely walk, I had such bad abdominal and back pain that I thought I was going to toss my cookies. Not sure what that was about, bot the traveling-pharmacy I call my carry-on JUST got a little heavier. The Tylenol wasn't cutting it so I took an Ondansatron (steroid) and Tim convinced me to take some Ibuprophen (which I wasn't able to take the whole time I was on Avastin due to the risk of internal bleeding) and then I was right as rain. Yikes, hope that doesn't happen again in the next 9 days.

I'm looking forward to tonight - having dinner with the Miniches and the Sharratts and the opportunity to watch GSP defend his title on UFC. I'm nervous already.

We have the kids today until noon and a few little errands and final packing to do - then heading into Toronto about 4p our time. I hope you all have a fantastic week... 

The upcoming weather forecast for Jamaica:
Not to rub it in or anything.

Long Term Forecast Updated:Saturday, March 16, 2013, 3:05

• Day
• Night

	Sunday March 17	Monday March 18	Tuesday March 19	Wednesday March 20	Thursday March 21	Friday March 22
Conditions 6am - 6pm
	Isolated showers	Isolated showers	Isolated showers	Isolated showers	Isolated showers	Isolated showers
P.O.P.	40 %	40 %	40 %	40 %	40 %	40 %
High	29 °C	29 °C	30 °C	31 °C	31 °C	30 °C
Feels Like	37	38	38	39	38	38
Low	22 °C	21 °C	19 °C	19 °C	19 °C	20 °C
Wind	E  10 km/h	E  10 km/h	E  10 km/h	E  5 km/h	E  10 km/h	SE  15 km/h
24-Hr Rain	close to 1 mm	close to 1 mm	1-3 mm	close to 1 mm	less than 1 mm	less than 1 mm