Wednesday 5 December 2012

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.







2 comments:

  1. YES!!! Possibilities! I'm jumping up and down for you. Let's get the show on the road!
    Barb

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  2. Hey, Barb! It was MEGA WONDERFUL to see you last night and to have some fun with you and your pals. That Chantelle sure knows how to do EVERYTHING with panache, doesn't she? I want to marry her. Kelly be warned.

    I'm so excited to hear that there are some more treatment possibilities for you to explore and yes ... WOW ... another reminder that one MUST be one's own health advocate and do one's own research so as to know what questions to ask just in order to have a sniff. I can't believe that you weren't already told about the possibilities right in your own backyard. What if you hadn't asked? *shudder*. I'm so glad windows (nay, DOORS) of hope continue to open to you ... nevermind you having to find them behind the curtains all by yourself.

    I'm also so glad that you get to look like a million bucks. It's hard to believe, by looking at you, that you could have any health issues at all. While that can work against you in some ways (SERIOUSLY, PEOPLE, I REALLY AM SICK ... yeah, right ...), I'm very glad that you've been given a break in that regard and Dr. Sami's words ring true. It surely must be a good indicator. It super sucked not having hair or eyebrows or eyelashes just because it was such a visual "tell" that I was going through some really bad shit. It's easier to pretend, even if for little whiles, that nothing's wrong if you can look in the mirror and see what you expect to see and if that's what others see, too. You deserve that bit of relief, that's for sure. And yes, I'd rather see a bald Barbie who has moved into the realm of "cancer-free" but getting there without being bald ... all the better.

    Twenty-four. I can't believe it. Surely there will be some extra special 25th anniversary chemo, right? Some glitter? Some champagne? Music? Dancing? Cupcakes?

    I hope December brings you all the magic of the season and more, Barb. BELIEVE!!

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