Thursday, January 31, 2013

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!!!


1 comment:

  1. Heya lady,
    I'm sorry to hear you're having another recurrence- I know how you feel about being a stage IV cancer patient and trying to live as normally as possible while having procedures in between. There really should be a book about that.

    I read about your dilemma with family vacations in Canada- there is a program in Ontario for Cancer Patients to have a free vacation rental house in cottage country (Muskoka's and the Haliburton Highlands); if you want to come to Toronto-you can do all the fun stuff in the city like visit with us :), go to the Hockey Hall of Fame, the Eaton Centre and stuff then you can head up north. I think you just have to have cancer or have had cancer to qualify- I don't think it matters what province you live in; but you need to apply early like now-ish since it is pretty popular but its also open more than just the height of summer. I'll find the flyer (I have it here somewhere) and send you the link.
    Wishing you happy thoughts during treatment.

    Oh and I always pick the purple gown...and have one option for toothpaste and stuff around the house (I have trouble making decisions too)
    Miss you and all you're awesome sisters!!