Sunday, January 20, 2013

Tough News

I can't believe that I havn't been on here since before Christmas.  I hope that everyone enjoyed Christmas and the holidays with their loved ones.  We had a nice Christmas except for the fact that I came down with the flu so missed out on some fun family get togethers.  The flu has been especially bad this year in our house.  For a while there was always someone sick.  Hopefully that is the end of that.  The boys are so much fun to watch Christmas morning seeing the excitement in their eyes!  I love it!

Of course, cancer was not too far from our minds as I had a scan scheduled for the 29th and always suffer from a little bit of scanxiety just before.  It's always a challenge to find balance between enjoying life and coping with the difficult obstacles that we face.  I went in to see my doctor last week to get the results of my scan and also my BRAF results.  The results of my scan were not good showing that the cancer has likely spread to multiple areas.  We were devestated.  Jeff and my mom both came with me to this appointment.  We really weren't expecting to hear this; although knew that likely we would hear this news eventually.   Unfortunately, this is inoperable and so we are looking at systemic treatment options.  The good news was that I do carry the BRAF mutation so I was given three options:  1) do nothing = not happening  2)  go on Vemurafenib which is the standard of care OR 3)  go on a clinical trial comparing Vemurafenib to two other drugs Dabrafenib and Trametinib.  The clinical trial is right here in Winnipeg.  Most clinical trials exclude patients with brain mets but for this one as long as they are stable you are eligible after "passing" extensive phyical exams and tests.  I have been doing alot of reading, discussing and thinking about what is best for me. 

I have another week and a half before I go back to see my doctor with a decision.  I really have been feeling pretty good and can't believe that I have these tumours in my body without any symptoms.  My mind has a hard time accepting this when physically I'm feeling good.  I did mention in my last blog that we thought that I had a hernia from my surgeries and now I'm not convinced that is what the pain is from.  For any of you anatomy pros out there the CT showed a few new lesions in the liver, a nodule in the adrenal gland and a paratracheal lymph node.  I am going for an MRI of my liver this week so that we can get a better look at what is going on there.  I keep thinking that there must be some kind of mistake.  My last few CT scans have shown some low density lesions in my liver and I wasn't even really sure what that meant but now I guess the concern is that there are some new ones that have popped up.   So much information to process.  Again I have to voice how grateful I am to my medical team.  My doctor knows exactly how to talk to me without beating around the bush and wasting time, guaging how much information I can absorb while also being kind.  My nurse is so very supportive and I trust her 100% with everything.  I feel like they are experts in their field and that they know when it's time to jump in with treatment and that time is now.  I met the research nurse in charge of the clinical trial as well and I like that I am made to feel that I have open access to them with questions and concerns. 

Meanwhile, we have been busy with the boys hockey which has been a nice distraction and Tyler is getting ready for exam time.  Gavin's team won silver at our tournament in Stonewall last weekend and today Kaden's team is going for gold in Warren.  We are really focused on spending lots of family time together and are thinking about taking the kids on vacation.  Maybe this is the time for our Disney vacation?  While I am still feeling good and have the energy.  Either treatment that I decide to take has it's share of side effects.  So I am focusing also on getting my body as strong as possible for this next treatment.  I have been watching some great documentaries lately, one of them was Hungry for Change, about food and its effects on our bodies.  I don't at all think that you can cure your cancer by what you eat but I do think that the healthier my body is the easier I will get through the treatments and the better my body will respond.  If I have to be on treatment now for the rest of my life, I really need to be able to feel good and have some energy for the things that I love in life. 

I strongly believe that as close to nature as you can, get the better able your body is to use that food to your advantage.  Fueling your body this way makes sense to me.  I have thought about what I have done in the last few months that may have caused this to happen but have to take a step back and realize that I don't have control over the cancer in this way.  I wish that it were that simple.  That there was some secret that I just needed to figure out in order to cure myself.  Like if I just stopped eating ice cream or chips that the cancer wouldn't come back.  I am working on not blaming myself everytime I have a recurrence.  My doctor has told me several times that I don't have any control over it.  It will come and go as it pleases.  That is hard to accept because I want to believe that I have some control over it and that it doesn't have that control over me.  "But doctor, that can't be....  I've been drinking and eating anything green, taking supplements, exercising.  Oh wait - I did have a chocolate bar a few weeks ago.  That's it!  That's why it came back!"  Like how ridiculous does that sound?  I feel like a child sometimes in that I can't control the things going on around me but the one thing that I can control is food so that is where I focus.  I have obviously made some big changes in my diet over the past few years and am feeling alot better for it but I also realize that there is alot more to cancer than that.

So what is the best kind of medicine?  Laughter of course!  My bestfriend has prescribed Laughter Therapy so her and I went to Rumours Comedy Club on the weekend.  It was awesome!  I felt so much lighter coming home.  What a great way to relieve stress!  Not a good way to relieve stress is yelling at psychotic hockey moms in the stands.  This one lady was yelling throughout the entire game yesterday driving everyone crazy.  When Gavin got run down in his net and she was screaming at the refs about the penalty call I couldn't contain myself anymore.  Oops!   Lots of long hot baths, winter walks and steaming cups of tea are probably better ways of coping right now. 

Speaking of which, a walk sounds great right now!  Hope everyone out there enjoys the day and takes notice of all the little wonderful things that are all around you! 


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