Catch my breath

What a whirlwind the last couple of weeks have been!  Finding out that the cancer is back and having to decide between treatment options.  Don't get me wrong!  I am not at all complaining about this since 3 years ago when I was first diagnosed with metastatic disease none of these options were available.  There were no options then.  What a long way we have come in the past couple of years, thankfully! I have been having a hard time making any decisions lately.  I was in for my MRI last week and when I was shown to the changing room to get into a gown, I spent way too much time trying to decide what colour of gown I wanted to wear - dark purple, dark blue, light purple, light blue, purplish blue, blueish purple....  decisions...... decisions.  I finally grabbed one and threw it on.  I'm finding the easiest decisions these days are so difficult to make.  What kind of toothpaste, deodorant or wine do I choose out of the millions on the the shelves?  I guess when you are faced with such big decisions like treatment options that your life depends on, it may be the little ones that end up being overwhelming. 

Anyhow, I had my scan and it confirmed what the other scan showed.  Cancer - melanoma.  The good news was that in the time between scans the tumours have not grown much at all.  I have decided to sign up for the clinical trial.  Sounds like I'm signing up for a yoga class or something.  Yep, sign me up!  I have already done alot of the required tests and scans so far.  The real test will be the brain MRI which I am having next week.  This could exclude me from the trial completely if there is any activity there.  So we will be anxious to get those results back.  Speaking of yoga classes, I am loving the restorative yoga class that I am taking with my sisters and one of our great friends.  It is really helping me to relax and stretch my body.  It's wonderful!  So I decided to sign up for a Pilate's class through cancer care in the spring.  I was a little surprised when I was told that you have to be finished treatment in order to sign up for this.  So, what about people who are on long term treatment?  I signed up for the restorative yoga class instead.  I'm finding that the system is not set up for patients who are living well with cancer.  Yes, I have been in and out of treatment and my cancer may not be curable but I still like to be active.  When I was in at the resource centre looking for books about living with cancer all I could find were books about survival after cancer.  What if there is no "after cancer" for you?  I spoke to the coordinator there to try and get some suggestions but I don't think she even really understood.  There were a couple of chapters which dealt with this.  Some people live well with cancer for years.  Trust me, I know.  I've met several of them and they are people just like you and me.  They are people who cherish every day because they know how precious life is.  They hold their children close because they know how much every hug and kiss means.  They lay in their husband's arms at night and shed a tear or two because they know how fortunate they are to have this time together.  But on the outside, they may look just like you. 

When you hear about someone with stage IV cancer which has spread to major organs what do you picture?  Someone lying in a hospital bed or at home in bed too sick to move or do anything?  Or do you picture someone like me - at the rink watching my kids play hockey, out at a concert dancing with the girls, striking a pose at yoga, tobogganing down Jim's Hill?  I do feel very fortunate to be able to still do all of these things (and I do have to nap to manage fatigue) but I am out there living life.  Now don't get me wrong, I know that this isn't always the case for people at this stage of disease.  But because of the many medical advances it is more common for people to live longer with cancer even if it is not "curable".  At many of the retreats and conferences I have been to, it is very difficult to tell who is the survivor and who isn't.  I know I've mentioned this before but it really is so true.  We are running marathons (definitely not me but I know many who have), cycling, hiking, and yes we can even do Pilate's.  Cancer is changing and does not always follow our typical idea of a cancer patient. 

At my appointment we also had a discussion about travelling and found out that Disney World is definitely out of the question because of the medications that I will be on.  The main reason being that I can not have any sun exposure because the medications cause extreme sun sensitivity which has been known to cause 3rd degree burns.  I have to be very careful so Florida is apparently out of the question.  I will have to always wear sunblock and was advised to get UV protection clothes.  I find it interesting that my disease can be caused from sun exposure and the drug that they use to treat it causes this.  Bizarre!  My doctor also discussed with us the risks involved in travelling because I can't get insurance and how if I were to need health care I could wind up in real trouble.  So, if we are wanting to take a vacation we would need to stay in Canada.  Now, good thing we've so far only taken the kids to Alberta (Drumhellar/Edmonton) so we have many more provinces and places to explore.  The kids have talked about Niagra Falls, the hockey hall of fame, the ocean, a fishing trip as some ideas.  If you've been on a family vacation and had a fabulous time somewhere in Canada please feel free to comment and let us know where you've been! 

I've been thinking alot about how grateful I am to have the support system that we have all around us.  The many messages that I have received is overwhelming and I appreciate them so much.  They give me strength and courage to keep smiling and enjoying life.  My entire family has gotten alot of support from friends, family, co-workers, employers....  It makes things much easier on all of us to have this gift.  We have had many special moments together in the past few weeks and this has meant alot to us.  So, although we are all feeling the stress and pressure of what this latest diagnosis means, we still have times of laughter, dancing, joy and happiness.  It's not all doom and gloom around here.  We love each other and we appreciate our time together and the life that we have together.  We will continue to be there for each other and lift each other up.  Cancer is a family illness and it's effects ripple out into the entire family.  It's not just about one person. 

Tomorrow it's time for another CT scan so maybe we'll make it a fun Friday night out!  Somehow, Kelly Clarkson always comes out with a song for how I'm feeling at the time.  I am definitely spending some time catching my breath these days!  Hope you all enjoy the weekend doing whatever matters to you!!!

xo
Natalie

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! 

xo
Natalie