Trick or Treat

All,
Just a quick up-date to let you all know that I have arrived safe and sound in Saskatoon - greeted by the "crisp" Prairie air and content in the knowledge that in my suitcase waits my favorite pair of long underwear. Hawt, right? Tim, you are one lucky man.

The weekend was a good one for the James-Bender clan - we got the opportunity to celebrate Halloween early thanks to Riley's daycare provider Sheila. She threw a kid's party on Saturday night at one of the local community centres and we had a great time!  We didn't get as many pictures as I would have liked but I promise I will do much better on the 31st.

The Deputy Sheriff and his sidekick

Nothing better than pizza with a spider the size of a smart car on the wall behind you.

There's a new Sheriff in town...

Avery our little Spider Witch

Riley hammering the piniatta

Avers got the first apple she bobbed for!

 My schedule for this trip to Saskatoon includes bloodwork and a chemo review tomorrow and then chemo on Tuesday morning. I hope to see as many of you as I can before I leave Wednesday morning. It's a quick trip I know, but after the side effects I suffered last treatment, I thought I better get out while the getting was good and before the nausea kicked in.

I also wanted to let you all know that I recently got a new cell phone. Same number just easier for these poor old fingers to type on. I am however using barbjames7@gmail.com as my main email address so please change me in your contacts.

Three of my favorite people on the planet have already or are about to celebrate their birthdays this week, Happy Birthday Anne, Parch and Telly!

Happy Birthday Anna-Bell. I miss you and think of you often...

Gotta' love that baby-face. Happy Birthday ChiChi!

Not everyday you get your picture taken with a celebrity, huh Tell?
This picture was taken almost exactly a year ago in NYC - 
We definitely left our mark on the Big Apple.
Happy Happy Birthday - hope you are enjoying San Fran!

 

Chemo #20 Update

All,
Please forgive me for being incommunicado these past days. Turns out adding the Oxaliplatin back into the chemo mix has left me sicker than I remembered. Food all tastes awful, have been having hot flashes and bouts of weakness as well as on and off nausea. 
I will do my best to return all your calls and messages as soon as I can. We have been a little overwhelmed lately, but am looking forward to things getting back to normal next week.
By the way, I got a new cell phone last week - one with a touch screen now that my fingers are at the mercy of the Oxaliplatin again. This means no more BBM for me, just text messages or What's App. And you will be happy to know that you no longer need to rely on my sasktel email account that was always returning your emails. I have linked my gmail account (barbjames7@gmail.com) to my new cell and it works like a hot damn.

Thanks Everyone,
B~~

Cracklin' Rosie

Today marks the 16th anniversary of my Mom's death - she was 2 months shy of her 50th birthday and a year short of her 25th Anniversary with my Dad. And she was way too young to be taken so early by this damn disease.  

But as much as I miss her, I have a tonne of good memories of her. She instilled in me a deep love for old time country music and Elvis Presley. Weekends were spent cleaning the house to the likes of Dolly Parton, Kenny Rogers, George Jones, Tammy Wynette, Loretta Lynn and Conway Twitty. She had a 20 year crush on Victor Newman from the Young and the Restless. (Insert Eye-roll Here) She was a die-hard sports fan - CFL football, Blue Jays baseball (she thought Cito Gaston was dreamy), hockey and curling. 

She made the best cream peas and brown-sugar pork chops EVER (and she made them every year for my birthday dinner). Her pickles were the best I have ever come across and her strawberry pies were amazing. She truly believed that Pepsi was better than Coke. (WHAT???) Her favorite chocolate bar was a Jersey Milk and her favorite chips were Onion & Garlic. (Yuck.) And she had more than a passing fancy for chocolate covered cherries and black forest cake. 

She is the reason for a lot of my weird sayings, what I now refer to as "Rose-ism's" whenever Tim looks at me funny for something strange that comes out of my mouth. 
For example:
"Sit still, you're jumping around like a peanut on a toilet door." 
"Time to hit the fart sack."
"Home again, home again, jiggity-jig."



She is the reason I love to read and be surrounded by books. She made me the killer Scrabble player I am today and is the reason Tim refuses to play with me. She refused to stop playing until she won at least one game of cards on our family Rummy nights. She loved to jive and she had the greatest giggle around. That being said, she was also one of the grumpiest morning people that I have ever known, not always a great combination because my dad can be annoyingly chipper in the morning. You were taking your life into your own hands by talking to her before her morning coffee - and that has helped me a lot in how I deal with Tim in the wee hours of the morning these days. ;-)

She and my Dad illustrated on a daily basis what a good marriage is all about. They had their fights like everyone else - the occasional snip here or there and they could give each other the silent treatment with the best of them, but they also held hands on the sofa while watching TV at night. And even after almost 25 years together, it was nothing for them to hug and smooch in front of us, or for dad to give her the odd swat on her bottom as she walked by. She would love Tim and the relationship I have found with him.

She taught me the importance of family and the need to care for and maintain relationships with my elders. Holidays for us were spent visiting grandparents and aunts and uncles. When the time came, there was never a question at all that I would visit Grandpa in the care home every weekend- and like it. 

And she was brave. She left her first marriage with very little education and less money in order to protect her kids. She re-entered the workforce after 20 years of raising kids, and she was very good at it. Although she wasn't well educated in the classic sense of the word, she was incredibly smart. And she had a dedication to religion and prayer that I sometimes envy these days. 

Her signature scent was Night Magic by Avon, and I still have a bottle of it on my dresser that I smell whenever I need to remember her. She called me Bobbie-Anne. And she gave great hugs.

Matchbox Twenty - I Wish the Real World Would Just Stop Hasslin' Me

Ok Everyone,

Yesterday was Chemo #20 and man do I have a story. But first, let me explain...
As you can imagine and as my good friend Dave so eloquently put it on yesterday's blog: 
"Ironically we cancer patients want to get through these treatments according to the prescribed schedule for maximum efficacy - the protocols are designed with a schedule that sets dosing and cycles of treatment to maximize/optimize their results.  My attitude from day one has been let's go....full dose...manage the side effects as best as can be but stick with full dose to optimize the results.  Kill the beast...do their job."
(http://davidbenjaminbrown.blogspot.ca/)

This has never been so true for both of us. For him because he is so close to the end of his treatments and wants time to recover a bit before his baby arrives in November, and me because all I can think is now my tumours are growing and I hate it. Delays are not an option because I have already had three months of treatments that did NOTHING. So I suffered through 6 chemotherapy sessions and their side effects for NOTHING. So now that we are adding the effective portion of my cocktail back in, I was quite psyched up for chemo yesterday. Until I got there and saw the look of shock on the receptionist's face. Turn's out Dave and I have had a similar experiences this week - being turned away for our regularly scheduled appointments, although for very different reasons. Unfortunately, Oxaliplatin takes 2 hours to infuse and the total time required for the full treatment in 5 and a half hours. I was scheduled at 1pm yesterday so the clinic rescheduled me for 9:30am. Problem being that even though they called twice, I didn't recognize their phone number (it came up as a "private number") and therefore ignored it as I was so busy on the phone on Tuesday with friends and family discussing my CT results. So one of the nurses came out to tell me that they would have to push my treatment to Friday at the earliest. And honestly, I burst into tears. I felt so stupid for not checking my messages and felt like it was my fault. But, all I could think was this canser is GROWING, and I don't want to wait another couple of days to nuke them. Add to that that my next appointments in Saskatoon are already booked, my flights are booked, my rental car is booked, my family and friends have made plans around those dates. I had already taken the required anti-nausea meds and used the last of the special bandages I use after applying numbing cream to my port. So it was just bigger than me. While she was in the other room trying to reschedule me, I started weeping (very quietly) and expressing all these concerns to Tim. Made quite a spectacle of myself actually. I could feel the sympathetic eyes of all the other patients on me while Tim was trying to calm me down and make me see that it was just a blip. Unbeknownst to me, at this point our very sweet receptionist (whose name is either Susan or Donna, I'm not sure thanks to chemo brain - Barb B., can you help me on this one? Pretty young lady with black hair and olive skin.) went back and explained the story to the chemo nurses. And they came to my rescue, offering to work an hour of overtime so I could get my treatment as planned. Of course my first reaction was no, I didn't want to ruin anyone's dinner and upset their work-life balance and the guilt got the better of me. Sooooo....I started crying harder. But my chemo nurses, who all grabbed me and gave me a big hug, and said "S**T Happens Barb - Just get in the bed and we'll get you going", saved the day. A special shout out to Bruce who stayed late to take care of me without a single complaint. And Janice and oh jeez, it's happening again - I want to say Lynn or Leigh - both ladies were so compassionate and funny, that I soon got over the tears. In fact, Nurse "L" walked into my area wearing a huge pair of over-sized glasses and had me howling in about 10 seconds. Unfortunately, we didn't get a pic of her wearing them, but she made me put them on...and hence this very sexy photo:

Hawt, huh?

But really, not nearly as awesome as this:

What a trooper!

Then, Tim started harassing me by aggressively taking multiple unsolicited photos of me with his iPad:

This is me playing along with Tim's shenanigans...

This is me looking to see who is watching us...

Smile dissipating...

Note the purse lips - patience wearing off....

The standard eye roll - Anastasia Grey would be proud...

And finally the bird that ended it all!

To be honest, he took at least 30 pictures in the span of about 60 seconds and was sweet enough to delete the ones where the double chin was front and centre. He did HOWEVER keep the ones where my eyes were crossed and where I was looking completely stoned, and I am sure those will be circulating among our friends before too long. Jerk-store.

Tim had to leave to get some work done and take the kids to swimming, so my dear friend Erin drove in to spend the last couple of hours with me and drive me home. I had a brain-fart and forgot to take some pics of her, so here is an oldy, but goody:

As you can see, she is absolutely hideous. Ha! I think that my fellow male patients thought they had died and gone to heaven when she walked in.  Wouldn't be a bad way to go, I'm sure if anyone were to ask their opinion.  We had an awesome visit, and I am pretty sure having her there was a big reason for the fantastic care I got from Bruce and his willingness to put in some over-time! Seriously? How many 30-somethings do you think they get in that place? And even fewer cuter than us. Toot-toot.

The good news is that my oncologist popped in for a chat and to answer some questions for me while Erin was there. I expressed my concern about waiting another three months for a CT Scan to see if the Oxaliplatin will work again, when the tumors have doubled in size in the past three months  - so I asked if they double in size AGAIN, am I screwed? And he said no. Whew. Then he said we have to give it time to work and the fact that they had progressed and progressed at the rate they did, was unsurprising to him. Ok, that's great but I wish someone had warned me. Anyway, he said if it doesn't work or if the neuropothy gets progressively worse, we will just switch me from FOLFOX to FOLFIRI - the next step in treatment that doesn't cause neuropothy or hair loss. Whew. Unfortunately I didn't have the forethought to ask why it is the second step - is it more or less effective and what are the expected side effects? Dumb-Dumb. Tim had to count down backwards from 10 when I told him that I didn't ask these very basic questions. Oopsy. I blame  it on the chemo-fog. Good thing is that I see my SK oncologist in less than two weeks. A little shout-out to Erin for purposely refocusing the end of the conversation with the oncologist to the comment about him being unsurprised about the recent growth. Made me feel a tonne better, thank you Lady.

One more pic - just for bragging rights:

That's right my friends! The Roughriders are finally playing like we all know they can and the win against the Argos was one of the highlights of my weekend! Then Tim and I watched "Faith of a Nation" - a documentary on the Rider's "13th Man" and how it came back to bite us on the ass in the 2009 Grey Cup final. Which I watched with Erin in Milton. And which also ended up with me crying and demanding a green shot to numb the pain. These days I rely on Ativan for that! Ha!

Thanks for tuning in folks,
Take care.

CT Scan Update

Team James,

I hope you all had a lovely Thanksgiving weekend. We did - spent the weekend with the kids, Saturday night having a phenomenal meal with the Benders and Monday afternoon I impressed Tim with my culinary skills by roasting a 15lb turkey for the two of us. He was a HUGE fan of the stuffing, gravy and if I do say so myself, the very tender and juicy turkey meat. Unfortunately we will now be eating turkey for weeks!

Gobble-Gobble!

I'm not sure if I have ever really explained the extent of my illness on the blog. Sometimes I worry that giving it too much airtime or actually putting it down in words will make it real, but let's be honest, S**T just got real again in a very big way so I think now is a good time as any to describe my diagnosis and prognosis. As you know, my primary tumor spread through my lymphatic system and into my liver before it was caught. This is a result of the fact that small bowel cancer a) is so rare and b) exhibits very non-specific symptoms, often making it very difficult to diagnose in the early stages. So, my diagnosis is "Stage IV Metastatic Duodenal Adenocarcinoma."  According to the oncologist and surgeons it is not curable, BUT the hope is to treat it chronically like any other chronic disease. What that means for me we don't really know. If you were to look up this type of canser on-line, you would see that they designate it with a "dismal prognosis" and suggest a 2-Year Survival rate of only 5%. 

Well, they can forget that garbage, because I am already a year in and feeling pretty good considering. I am also, on average, 35 years younger than the typical patient who develops this specific disease, so I am definitely stronger physically and have more to live for. So there.

I know you have all been curious about the results from my latest CT. I actually got the results on Thursday afternoon, but they weren't what we had hoped, so Tim and I made the executive decision to keep them to ourselves until after the weekend in an effort to enjoy, and let our friends and family enjoy Thanksgiving. (Sorry)  So, after work on Thursday, Tim and I popped into Moore's to buy him some new ties and we were having a hoot. Until my phone rang. It was Dr. Sami, my Saskatoon Oncologist and he didn't sound like he had happy news. As you may remember, my Chemo treatments have involved a cocktail called FOLFOX, which includes Leucovorin, 5-FU and Oxaliplatin as well as an additional medication called Avastin. Beacause of the Oxaliplatin, I began to experience some very serious side effects, specifically hand and foot neuropathy, which basically means the nerves in my hands and feet were being damaged to the point of an inability to do up my own buttons or wear heels of any kind due to a lack of feeling.  This can be quite dangerous in one's everyday life, making one more likely to fall and get hurt or injure one's hands, increasing the risk of infection. It can also become permanent after a certain point. As a result, my oncologist thought it best to take a break from the Oxaliplatin 3 months ago.  Now up to that point, my tumors had successfully shrunk at each CT during the first 6 months. Unfortunately, in the past 3 months, they have grown quite aggressively, and are now back to the approximate size that they were when we started this process. Sigh. I cannot tell a lie, I was incredibly upset Thursday and Friday, but thanks to a mini-meltdown in the truck outside of Moore's, an incredibly supportive Tim, a few good cries and a last minute prescription of Ativan, I was able to get perspective and put my head back in the game by Saturday. 

The good news is that this has lit a fire under our asses to get back into a more healthy diet and lifestyle now that I have gained some weight. We have also been looking into some other treatments in the States and Mexico and have been lucky enough that the latest news has reignited the passion of some of my very good friends (thanks Chantelle, Nance, Mar, Keats, Shawna and if I know her, Michelle) to do their own research.  I have received some amazing phone calls and messages from friends and family near and far - thank you so much for your prayers and well wishes.

I can once again say "BRING IT ON!" and mean it. Thank you.
Hugs to all.
B~~

Autumn Update

Hello from colourful Ontario! 
Those of you who know me well, know that I am typically not a big fan of Fall. And by "not a big fan" I mean there have been years when it felt like someone flipped a switch in my psyche from NORMAL to DEPRESSED, BITCHY and LETHARGIC at the very second the first leaf started turning from green to amber - otherwise known as Seasonal Effective Disorder. The only thing that could pull me out of the depths of my depression was a daily elephant dose of Vitamin D and a nifty little blue light from Costco that cost me a hundred and fifty bucks. Well not this year my friends! I am shocked every morning when I leave the condo at how gloriously beautiful the trees are here. The reds and purples are so much more common here than in Saskatchewan. In fact, the combination of fall colours and the fog we had this morning was reminiscent for me of driving up the Cabot trail in late September a few years  ago. I know, I know - it's only October 3rd and I shouldn't get too cocky, but I cannot lie, the fact that the weather man is calling for up to 30cm of snow in certain parts of the prairies in the next few days doesn't hurt either!

Kitchener, Ontario

I need to do a quick shout-out to my little friend Emily M. from Thunder Bay! Emily is the youngest daughter of my good friend Marnie and a few weeks ago she ran in the Thunder Bay Terry Fox Run...and she dedicated her run to me. I can't even tell you how much it meant to me that she would think of me like that. Thank you Em, you made my day.

Emily "running for Barbie"!

For those of you who are curious about the results of last week's CT scan, you are not alone.  My oncologist popped in during chemo on Tuesday while I had a room-full of guests, (that's right, I hold court at the canser clinic every few weeks if you would like to attend) and said that unless he has to change my treatment regime due to lack of efficacy, I wouldn't hear from him and we could just discuss the results at my next appointment. In a month. A MONTH? And between being preoccupied with Chantelle and Mike and the typical chemo fog that sets in about an hour after the first drip - I said okay. Okay? That's NOT OKAY! I get the premise that no news is good news and that he probably didn't want to waste time calling me if there was no change BUT I still want to know. Are the tumors continuing to shrink or have they stabilized? The answer could mean the difference between going on as before and looking into a three-week intensive treatment clinic in Mexico or other alternative treatments. So, to answer the question many of you have asked - no, I still don't know the results. I left a voice mail with my oncology nurse on Monday afternoon and I have yet to hear back. Super. 

Honestly - I've discovered that this whole canser thing is a full-time damn job - between staying on top of my health care practitioners, booking appointments, dealing with the insurance companies and all their repetitive and redundant forms and actually recovering from the nukes every two weeks - I could really use a vacation. Oh well, maybe next year.

I will keep you posted as things arise, but thank you for your inquiries and warm thoughts. They continue to keep me positive and hopeful. And for those of you who have expressed concern because I haven't posted any photos of me lately - don't worry! I am "this close" to breaking the 100lb mark! Wahooo!