Hang On and Enjoy the Ride!

Hello Friends,
It has been awhile since my last post, but the holidays have been very busy for the Bender household. We had an incredible time and made lots of good memories.  Tim and I had a hoot shopping for the kids this year, below are some pictures while waiting in line at Tim Horton's mid-way through one of our many shopping excursions. I have taken to wearing my hair a bit differently and Tim insists on taking pictures of me constantly. 

Christmas itself was good for my soul. Tim and I spent a quiet Christmas Eve and morning together, watching movies and drinking Mimosa's. Then the kids came to us around noon on Christmas Day and chaos ensued. We had so much fun watching the kids open their presents that we completely forgot to take any pictures. Bah. That evening we spent with Tim's family in Wellesley, eating our weight in appetizers and dainties. Tim's mom, Barb sure knows how to entertain.  I can't say what a nice time I had, Tim's family is so warm and welcoming and we shared a lot of laughter that night. Luckily, his brother-in-law took some pictures, so I will post those when I get them.  

I have to say that one of the prettiest, most functional gifts I got was from Tim's folks - check out these bad boys:

The cutest, warmest boots EVER! I haven't had a single day of cold feet since I got them, and that's saying something considering the neuropathy from which I have been suffering.

And look at these beautiful bracelets Barb makes....aren't they gorgeous? I can't stop wearing them.

 

We FINALLY got a goodly amount of snow the evening of the 26th. To be honest I was quite fine without a white Christmas but was super-stoked (that's the P.A. coming out in me) when the storm came. It felt like home. And Bailey is thrilled, because despite her diminutive status, she is very much a "Winter Dog". Tim had some serious shoveling to do, and because he is so focused on living a better life these days, shoveled not only our sidewalk and driveway, but did the neighbours' as well.
 

Tim and Bailey on the trail behind our house.

 Yesterday was an absolutely beautiful day - a little grey but with a steady, soft snowfall all day. It was the perfect opportunity to take the kids sledding. Now please know that I can't even REMEMBER the last time I went sledding and I wasn't sure how the old derriere was going to hold up BUT we have some really great foam sleds that seem to be a lot safer than the blue crazy carpets of my youth. We had a blast!

It was a fantastic day.

I have been thinking about some very good girlfriends who are going through some trying times right now - you know who you are. My thoughts and prayers and good vibes are on their way to you. Hugs and lots of love too.

Milestone Week

All,

This is definitely a week of milestones for me. Yesterday would have been my mom's 66th birthday had canser not taken her so early. You have all heard of me talk about her, so I won't tell you all the great things about her AGAIN. Just know that I am thinking about her a lot right now.

This week we also decorated the tree for the first time as a family...you will notice that it starts out looking one way and ends up looking completely different. Originally, we let the kids decorate the whole thing and then I went back and re-did it with lights, garland and all.

Notice all the bulbs are smack-dab in the middle, right at kid-height...

What it looked like then....

And what it looks like now...

Our cinnamon scented centre piece.

Yesterday Tim and I decided to sponsor a little 7 year old boy from Mozambique - his village doesn't have a well for fresh water, he doesn't go to school and his mom is on her own trying to care for her children. I was in tears when the lady from World Vision told us his story. The Bender clan as a group has adopted a local family for Christmas. And yesterday I went to Wal-Mart and purchased gifts for a toy-drive at Avery's school.  Ever since the shooting in Newtown, Tim and I have been so much more aware of the struggles that others face and we are doing our best to do as many good things for others as we can. It makes us happy to help good people who are less fortunate.

Today was my 25th Chemo Anniversary. Yikes. It took forever and I feel a little "off", so am laying on the sofa with Tim watching the Anderson Cooper coverage of the Newtown shooting, crying like a baby.

Thanks to all who texted today to check in on me...
Please take good care.

Wednesday Update:
Today was ANOTHER milestone for both Tim and I - we attended Avery's Christmas concert over lunchtime. It was the first time either of us had attended one as a parent as opposed to a participant. I would like to post some pictures, but try not to post pics of other people's children without their approval. So instead, I will post one of Avery on her way to the stage:

o

She did a fantastic job! Recited part of a poem and sang a lively rendition of "Father Christmas".

 Aftterwards, we had a few minutes before Tim had to go back to work so we both stopped for gas and a quick McDonald's run. Something we've NEVER done before ;-)
And if you believe that< I have a bridge to sell you...

She Is Fierce

I FINALLY got word from Dr. Sami today about the results of my CT scan...and the news is as good as I could have hoped for. He said that for the most part, my tumors are stable - they have grown, but only by two mm's on average, so although there are a lot of them, they are still very small...which means they are pretty much stable. Considering the fact that after the last CT and without the addition of oxaliplatin they had doubled in size, this is great news. He also said that my spine and pelvic bones are all clear, which is FANTASTIC because previously there was a "spot" on my spine and that has been playing with my head for weeks - I have been having a lot of back pain that I can now attribute to other things. Insert HUGE sigh of relief here. So the plan for now is to stay the course and continue on with FOLFOX on Tuesday.

We chatted about targeted radiation therapy and targeted chemotherapy, and at this point he thinks my mets are too small for it to be effective but suggested that I speak to Dr. Shaw about that when I get the chance. 

I am so very grateful that we finally caught a break. This news couldn't have come at a better time. Now we feel like we can relax and enjoy the holiday season. As it should be.

A few pics:

Texting the Inner Circle with my good news

Celebrating the good news with  a Moose Winooski's Coronita Margarita!

Back in Ontario

Well, here I am, back in Ontario with Tim and the kids. The last couple of days in Saskatoon were awesome - and very indicative of the kind of friends I have. Mike spent many hours driving me around to two hospitals, three pharmacies, my dental clinic and Tim Horton's in the middle of a snowy and difficult-to-maneuver Saskatoon. Kristie and Sophie came over for a visit and I got LOTS of Sophie cuddles and giggles. Chantelle and Sonya came over my last night with pizza and homemade cake pops to keep me company and send me off. I was feeling pretty good those few days so it was easy to enjoy. Unfortunately, due to weather and a variety of other factors, I did not get to see any of my family or Parchy, which was a bit of a downer. 

Thanks to the steroids I was hyper this round and got very little sleep, especially the last night when I knew I had to get up before 4am to fly to Calgary. I am glad that I decided to meet up with Tim on his way home though - didn't realize how much I had missed him until I saw him walk through the security line. I also got the chance to visit with some old Janssen friends; Mike, Brayden, Dino, and Robin. I can't tell you how good it was for my soul and how very much I miss being a part of your ranks.

These past few days have been an interesting mix of contentment to be back with my little family, utter exhaustion and feeling like garbage as a result of chemo and one hell of a winter cold. Tim has been a doll and taking great care of me, even though he too is still feeling unwell and trying to recover from a week away at meetings with a two hour time difference. I literally have been sleeping about 15 hours a day, just trying to recover and get back to my old self. The neuropathy is not great, I am covered in cankers and cold sores, and my GI tract feels like someone has cleaned it with steel wool. But the good news is that my head space is MUCH improved from what it was a few weeks ago. 

 I was feeling so sorry for myself and so angry with the universe that I momentarily forgot about the good things in my life and how they buoy me everyday. I was worrying about things I can't control. I began resenting those around me who are healthy. And I shut down.

And Lord help me if Kendal finds out....

Because as much as I fear canser, I fear being "that poor girl with canser" more. I was letting it win, I was licking my wounds, I was hiding - because I didn't want my friends and family knowing how very much I was struggling. And poor Tim was left with the fall-out.  Funny how a change of scenery, good times with good friends. missing my "husband" and some potentially positive news about new treatments can set a girl right again.  
One thing I can say about this whole "canser" thing is that it is a never-ending battle of highs and lows. But I am just lucky enough to have very understanding people who love me - no matter how difficult I am.

24

Wow. It has been a week of incredible ups and downs for me and it's only TUESDAY. I cannot tell a lie. I have been having a very difficult past few weeks emotionally working up to this week - December 1st was the anniversary of my surgery, I wasn't looking forward to being away from Tim, the kids and Bailey, the implications of this week's CT scan and missing my old care-free life and career before canser.  So I have been absent from the blog for that reason and now have so much to say I hardly know where to start.
  
I am currently back in the land of Green and White....and more white with all this damn snow. Tim and I flew out on Sunday, he to Calgary and on to Banff for a National Sales Meeting and me to Saskatoon via Winnipeg to spend time with family and friends, oncologists and surgeons, nurses and pharmacists, radiologists and imaging techs, fellow patients and comrades in arms. 

Chantelle picked me up from the airport on Sunday and then took me for a few groceries. My sister, niece and grand-niece had plans to come spend Sunday night with me but had to cancel due to dangerous driving conditions. Monday morning Chantelle picked me up first thing for breakfast and to head over to the canser clinic. We were very lucky to get in right away for bloodwork. While in line I was lucky enough to run into my friend Korrine from Prince Albert who was diagnosed with leukemia earlier this year and is now canser-free! It has been a very hard year for her, but now she has the opportunity to recuperate and look forward to living her life with a new perspective. THEN we ran into Kelly and Elayna (if you'll remember, they are ALSO from Prince Albert, as am I - starting to wonder about that little common thread...) who also has leukemia and was in the city for another procedure and treatment. I'm telling you - as much as it's nice to see a familiar face or two, this is getting really ridiculous.


After chatting with them, we went in to see Dr. Sami and the first thing out of his mouth was a compliment on my appearance which I quickly shrugged off, wanting to get down to business. And then he said, "I'm serious, a person's external appearance is very indicative of what's going on internally, and you look great." Very encouraging words Darlin', but SHOW ME THE MONEY. Prove it. He also said that he was SHOCKED that after 23 treatments I still have my hair and he tells all his new patients about me to give them hope that they may too keep theirs. It was touching. But still, I'd rather look like a baby bird and be canser-free - not to be insensitive to my friends who have lost theirs - I count myself incredibly lucky in this one area.  He gave us a great deal of time to ask all the burning questions that have been floating around my head since the bad news after my last CT scan results. I told him that after the emotional break-down that later ensued, Tim and I got cracking and phoned a few clinics based in New York specializing in liver ablation therapy (targeted tumor radiation) and a hospital in Tiajuana called the Oasis of Hope that specializes in natural therapies that make the tumours more susceptible to chemo and less likely to become resistant to it. I told him that I had had a few telephone consultaions and was interested in possibly pursuing them at a later date and asked his opinion. He was relatively open to the idea and agreed to refer me for a PET scan, but told me I would either have to go to Edmonton or Winnipeg or wait 3 months until Saskatoon gets it's PET scan. The other option is to request it in Ontario, but the timing of that will depend on my CT results and how well the current treatment is working. 

After that we grabbed a quick lunch at Earl's (oh, how I've missed you my friend) and then headed over to see my surgeon Paul, the whole time complaining that it was going to be a waste of time because he can do no more for me surgically. Wrong. Well, he can't do anything more surgically - but Chantelle and I grilled him about the possibility of periodically resecting additional pieces of my liver, letting them rejuvenate canser-free and so on. Turns out that is NOT possible because there is no accurate way to measure liver function on individual portions of the liver - so cutting out tumours could result in removing the remaining functioning parts of my liver. Poo. BUT it wasn't a complete waste of time because we then discussed the other treatment options I have bee researching in the States and Mexico...to which he said "Barb, they do those treatments here in Canada as well, in fact there are two radiologists at St. Paul's in Saskatoon doing targeted radiation and targeted radio-therapy on liver mets. We also have the option to do targeted chemotherapy on your liver tumors." To which I say, great, but why hasn't this come up before??? It is just such an amazing example of how you HAVE to be your own advocate, research and ask as many questions as you can. Seriously? So Paul said he would consult with Dr. Shaw who scrubbed in on my surgery and is the local liver guru and see if he could get me an appointment to see him this week to discuss our options. Paul said he will know better if there is any data out there to support the use of these therapies with my type of canser. To which I say, to hell with data - there won't be any because of the rarity of my canser, but SIGN ME UP anyway. I will be your guinea pig if it extends or saves my life. Bring it on. 

Unbeknownst to me, at the very same time, Tim is in Banff at meetings chatting with Kathleen, Janssen's SW Ontario oncology rep and they are having a VERY similar discussion.  Only in this conversation, that there is an incredible doc in Kitchener doing these treatments as well. (For those of you unfamiliar with the geography of Ontario, Kitchener is 10 minutes up the 401 from my house in Cambridge.) So all of a sudden I feel like we have all these other possibilities, that are closer to home and won't bankrupt us in the meantime. So once again, I am finding the hope that I have been missing these past weeks and months. 

After that we headed to City Hospital for my CT scan. It was relatively quick and painless if you don't count the THREE tries and repeated DIGGING around for a "bouncy" vein with a needle the size of which would make a horse cry. I am expecting the results early next week and and will communicate them as soon as possible.

Today (yesterday actually, since it's 2am) was Chemo #24. Crazy. Once again, Chantelle picked me up for breakfast and we headed over to the hospital. Kristie met us just after 9 and then Mar popped in later in the morning. It was fantastic to spend the time and share some laughs with my girls again. It reminded me of a scene from Sex & the City when Samantha was in chemo and Carrie, Charlotte and Miranda showed up with a cooler full of popsicles. I have good friends and I forget how you make me laugh. I love you Ladies. Kristie stayed the whole time even though she is "this" close to going into labour, then we grabbed some lunch and went our separate ways for naps.

Chantelle threw a little pre-Christmas get-together tonight and invited many of my favorite Saskatoon people. Unfortunately Parch couldn't come because he has a bacterial infection and doesn't want to make me sick. Bah. I miss him. Please see below:

Marlys

Heather

Kevin and Heather

Heather and Telly

Linda

Chantelle and Gum

Linda and Bob

Bob

Mike (and me standing on the sofa)

Kristie, Kell and Shardelle

It was a fantastic evening for me. So many laughs that I can't remember why half of them happened. I have amazing friends - thank you for everything.

I am exhausted but can't sleep. Night time is always the hardest for me. Turns out I have trouble sleeping alone these days, no Tim, no Bailey, no Avers. I'd be lying if I said I sleep when Riley crawls in with us - hard to sleep when one has to constantly be on the defensive to avoid random appendages in your face.  Doesn't mean I don't miss his random kisses and "I weally wove you Bowbie"(s). Time to try though. Goodnight.