Another amazing retreat!!

This last month, as most of the months flying by these days, has been full of its ups and downs.  I can't wait to share a little about the retreat that I was able to go to with the Callanish Society in Vancouver.  This was a definite up moment for me in February.  I had a fantastic start to the retreat when I got to Vancouver and was greeted by my amazing friend who I met at the last retreat I was on and her husband.  We spent the night chatting about life and everything else under the sun.  They took me down to the ocean in the morning and we walked and went for brunch.  It was such a beautiful, sunny day.  Later in the afternoon one of the other participants from the retreat came and picked me up and we were on our way to pick up a few more people and then on our way up to Brew Creek Lodge.  What a beautiful drive up through the mountains.  I was pretty quiet on the drive up taking in the breathtaking scenes.  Not used to views like that here on the Prairies! 

What can I say about the retreat itself?  The next week would be full of long chats with other women with metastatic cancer knowing exactly what it's all about, nurturing meals all made with fresh ingrediants and lots of love, mornings started with Qigong/meditation where we would wake our bodies and set our intentions for the day, intense sessions which I was always amazed would unfold in magical ways, restful afternoons to choose what we needed most in that moment for ourselves, relaxation sessions where we were tucked in to our cozy nests where we could just breathe and feel whatever would come up, evening council by the fire speaking our truths about the day, playing guitars and ukelales, singing songs......  I could go on and on about all the amazing things that we did and the realizations that I was able to have from being away and taking this time.  So grateful that this was made possible for me.  I learned so much from these other woman about living with incurable cancer and what that means. 

I was very fortunate to not have any major side effects from the chemo while I was away.  I started just the day before I flew out and two days into the retreat I started with the rash on my face.  Getting a rash is the most common side effect of this drug so I was not surprised when this happened.  My sister, thankfully, had sent some cream along with me which really came in handy.  When I returned home and got settled into life again I seemed to get sicker and sicker.  The rash spread from my face down my entire body until I was covered from head to toe.  I was started on a steroid cream and some Benadryl and this seemed to ease things a bit.  Almost as soon as I got this under control I started having some pain in my legs.  Then the fever, chills, night sweats, racing pounding heart and that's when I knew it was time to go in and see someone.  I was trying to ignore this for a few days but was pretty sure I was getting some sort of infection.  I tried getting out for a long walk, going shopping but nothing was making me feel better.  Friday night I was really worried that something horrible was going to happen in the night so Saturday morning I went in to Emergency.  Jeff was taking Gavin up north for a hockey game so my sisters both came with me.  I have to say that I was very impressed with the care that I immediately received there.

My fever continued and after every test under the sun it showed that my blood counts were not good.  My white cells were way below normal and I was neutropenic.  Which basically means that my immune system was shot and I was very vulnerable to infection.  My chemo was immediately stopped which I was not happy about.  That was one of the reasons why I did not go in sooner.  I was worried about them having to stop the chemo.  I accepted the fact that it had to be done.  I was also started on an antibiotic since my symptoms were all showing that I had some sort of infection.  I was happily sent home with the advice to stay away from crowds and sick people until my blood work improved.  I spent the next several days resting and seeing improvements in my energy level.  I was pretty exhausted so was sleeping lots during the day.  Then the rash which I still had started getting worse.  I went in to see the doctor on Wednesday and when I saw my dermatologist she knew right away that I actually had two rashes - one from the chemo and one from the antibiotic.  Yikes!!  So I had a reaction to the antibiotic and that was just making everything worse.  I was taken off everything and told to watch my temperature closely.  It turns out that all of the symptoms I was having could have been from the chemo.  Maybe there was no infection?  My body was just really reacting to the chemo.  So now we will wait for a couple of weeks until things stabilize in my body and we will retry the chemo at a lower dose.  It turns out that maybe it was just too much for me.  I am looking forward to my usual doctor returning from holidays since of course when this all happens he's gone and I'm seeing someone else that I've never seen before.  That doesn't help matters. 

So that's what has been going on around here.  The kids have been extra worried about their mom and not liking that I havn't been feeling good.  Now that my energy is coming back they seem to be more settled.  It really does effect how they are dealing with things.  I'm just glad that they can open up and share how they are feeling so that we can talk about it and they can see that things will get better.  Jeff and I have always been very honest with the kids about what's happening.  I want them to know that we are not keeping anything from them and that they are very much a part of things.  I have learned over time that if we don't share things with them they just fill in the blanks on their own and usually come up with some worse scenario. 

I've really been noticing in the past couple of weeks how beautiful the snow looks.  While I was out for a walk through Quarry Park last week I really noticed the sun reflecting off of the snow making it look like diamonds.  I felt like I was walking on millions of packed diamonds.  I could see each snow flake shimmering on the ground.  When I got home I noticed in our tree out in the front yard just a few tiny icicles hanging on the branches and how beautiful they were.  It's strange how feeling unwell has made my eyes open and made me able to see all of this beauty all around me.  It truly is amazing!  I'm not sure if it's that I've slowed things way down since coming back from retreat or the need to focus on some good because it makes me feel better.  But whatever the reason I'll take it!  Hope you can all take the time to enjoy what is all around us!    xo

Learning through cancer

I have learned one thing over the past couple of weeks.  I am definitely not cut out to be a patient....  As a part of this clinical trial I have had to have several different tests and scans lately.  I have realized how odd this is for me.  I don't feel sick, yet I'm at the hospital surrounded by sick people, being treated like a sick person and it just doesn't feel right.  It's actually making me feel sick just being there.  I havn't had to be at the hospital for a few days and am feeling more like myself because of it.  It's like you have to give up part of your identity when you are there just to preserve it.  I come home feeling bruised and less than a person then I did before I went.  I went for a CT last week and found myself getting so frustrated because I was being treated like a nobody - just another body.  As I was getting prepared for the scan the technician's cell phone rang and he picked it up chatting to his friend the entire time he was prepping me.  Then when it was time to inject the contrast and the IV broke apart I wound up with a mix of blood and contrast all over me.  He of course blamed the nurse who put it in for not making sure it was tight.  I kept thinking to myself, "Maybe if you were paying attention to what you were doing...."  Of course I didn't say anything about it.  Just thanked them and left.  It's really nice when they can pay attention to you, what they are doing and make you feel comfortable.  Unfortunately, this is not always the case.  I imagine it is difficult to see each person seperately after having one person after another go through your care but we are individuals and I deserve to be treated as one.  Ok, that's my rant!  Glad that the majority of my health care professionals have been considerate, caring and good at their jobs. 

I did have my brain MRI also this past week and unfortunately the results were not what we had hoped for.  I have two new brain tumours which means that I am excluded from the clinical trial which I was hoping to get in to.   We were obviously upset with this news but am relieved that there are other options.  I was in to see my doctor the following day and he gave me my presciption which I will be starting on Wednesday.  I am looking at it like this.....  I may have gotten the same drug on the trial anyway since it was split half and half, I don't like being at the hospital being poked and prodded all the time which would have happened on the trial regularly, and it may be safer to be on the approved drug since it has been well tested.  It is what it is and so we move on with the options that we have in front of us.  And again, I do have to express that I am very happy to have any options and I don't take this for granted for a second.  I just sometimes wish that my options were more concrete. 

Part of the reason that we were holding off starting chemo is because the flu has been running through our house for the past week.  We need to make sure that everyone is healthy before I start.  I am being scheduled for Gamma Knife again in early April.  I don't have to stop the chemo while going for gamma so this is a relief.  The delay with the gamma is because the machine is going to be down for the month of March.  Hopefully the chemo will help out with these tumours anyway since it is thought that it passes through the blood/brain barrier.  Who knows?  Maybe by the time I go in for gamma they will already be gone!  One can only hope.  I am very anxious and excited to see my next set of scans to see how this drug is going to respond.

So, although I am starting chemo on Wednesday I am still going ahead and flying to Vancouver for a retreat through the Callanish Society for people with metastatic cancer.  Good thing my medication is in pill form so I don't have to spend hours in the hospital.  I had registered for this a while ago and despite these latest findings think that now it is even more important for me to go.  I get alot out of these retreats and need this time to work through everything that is going on both in my mind and body.  So I'm very grateful that things came together and I am able to go.  I believe so much that when things are meant to happen they do!  I am hoping that the side effects which we are expecting take some time to come up and that I'm feeling Ok while I'm away. 

When all of this first happened last month, my mom and sisters decided that a night away with the girls was in order.  We booked into the Fort Gary Hotel for a pajama party.  OMG!  What a fun night!  We spent the day at the spa getting pampered, enjoyed a delicous dinner in our suite, and I actually had the best sleep I have had in a long time that night (could have been the champagne).  It was so nice to put everything aside and just laugh and relax.  It was quite the snow storm outside and as we looked out the window it felt like we were in our own snowglobe.  So beautiful!  The staff were so accomodating and made this time so special for us!  Definitely my new favorite hotel and spa!!  Thanks Mom and Dad!!!

Another lesson learned is that sometimes things are out of our hands.  We can't control alot of what happens to us so we make the best of it and carry on.  I know that I can wish all I want that things are different but they are what they are.  Sometimes I think back to life without cancer and I envy that time.  I wish that I could have it back - not just for myself but for my whole family.  This has really changed us.  Worry, grief, sadness and anger are all with us every day.  It's trying to find the laughter, the love, the happiness, and the joy through it all that is rewarding and so worth it.  Cancer can not take that away from us, no matter how hard it tries.  And so we carry on loving and laughing!

xoxo
Natalie

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

Finding Peace

 So I must saying looking over my last blog I am in a much different place right now then I was then.  Sometimes this journey of life is so full of ups and downs that it is just easier to ride the waves instead of trying to fight against them.  I was talking to a friend last week and she reminded me of this.  The feeling of letting go and trusting that you will stay afloat.  One of my favorite things to do is to float around in the pool letting my body completely relax and just float along wherever and however it wants.  It's gives me such a feeling of relaxation and it feels good to let go and just trust.  November had it's definite ups and downs.  I did struggle alot with my feelings of worthiness, guilt and self-doubt.  I do believe that things happen as they are meant to and being able to trust in this has really helped me this past month.  I have been able to deal with alot that I have been pushing somewhere else, keeping busy with work and the kids.  It has been so difficult, yet so freeing to have the time to work through this.  No matter how hard we try to ignore or block the difficult stuff in our lives, it's still there and doesn't go away.  I have been able to let some of this go and have found some peace with things.  This is something that I am always looking for - peace.  It seems that just as I find some peace somehow I lose track of it and have to look for it again.  This is definitely something that comes and goes for me.

When I was younger my parents used to throw these dinner parties cooking up amazing food for our family.  We would sit around the dining room table for hours talking about life.  I remember one time we wrote down where we thought that we would be in 10 years.  I wonder what I wrote.  It would be funny to read that now.  Knowing my mom she probably still has them tucked away somewhere.  To celebrate my sister's birthday this month, my brother-in-law took us all out for dinner at our favorite restaurant - The Round Table.  It reminded me so much of those dinners we had years ago at mom and dad's.  All of us adults sitting around the table talking and really being able to catch up with each other.  It was such a special night and one that I will never forget.  My parents have always kept such a strong family connection in us.  My sisters are always there for me - always - no matter what.  And my brother-in-laws are not in-laws at all but I see them as my actual brothers.  They have both been in my life since I was in my teens.  We have all been through alot together and I am so thankful to have all of them in my life.  xoxo

We received the great news this month that my scan came back stable!  We were so relieved, after having two abnormal scans, this was a very welcome surprise.  The two tumours have not changed at all in the last three months so this means that the Gamma Knife is doing it's job and hopefully will continue working it's magic.  As I waited for these results, like always, I do two things.  Hope for the best while preparing for the worst.  I have found that this works for me.  If I go in adamant that my scans are clear and only thinking positive thoughts I feel devastated if they tell me that they have found something.  I know that it is sort of the in thing to do now when you have cancer - think positive, don't let the negativity in.  But over the last three years I have learned that this does not help.  No one feels positive all the time and to not be honest with how you are really feeling I think is not at all helpful.  I feel the best and the most at peace when I am honest with myself and with other people about how I am feeling.  So I guess it's time to be honest right now since I'm writing this.  I was very relieved to hear that my scan came back stable but at the same time was disappointed that the Gamma Knife didn't shrink them more or even make them disappear altogether.  I felt bad about feeling this way because maybe that was selfish of me to want more.  My doctors were very happy with these stable results.  They are happy that things are not progressing quicker which usually happens with this disease.  I am not the norm (my Neurosurgeon says I'm weird) which I'm happy about but I still want more.  They are happy with stable and I am still hoping for cured. 

The most wonderful thing that I learned at the Callanish Retreat is that it's OK to feel whatever you are feeling.  I have always been one to concentrate on the positive and that is not a bad thing.  But I have found that when I let the other (negative) feelings in and sit with them they eventually move on without me working hard at flipping them to positive or trying not to notice them.  I'm not afraid of feeling sad, worried, angry, frustrated or scared anymore.  And have found that by doing this they don't stay - they move along.  This leaves room for me to feel truly happy, hopeful, able to love and be loved, proud, joy and peace.  There have been so many times in the past month that I have been able to really feel these.  Numbing myself to all of the bad feelings that I don't like feeling also numbs all of the great feelings and these I have missed. 

I am waiting on some pretty big results right now.  Results that will tell me whether or not I would be eligible for a new drug that is being trialed now for metastatic melanoma.  If I have the BRAF mutation then this would be a drug that could be a potential future treatment option.  60% of melanomas have this and with this new drug have shown much better outcomes for people with later stage melanoma.  I have been wanting to know my BRAF status for a long time so this is a really good thing.  You are eligible for the drug when your melanoma becomes inoperable.  I havn't been able to understand the thought of waiting until this point before testing the patient.  I can't imagine....  You find out that you have inoperable melanoma.  They send your pathology off to find out if you are eligible for the drug which takes 3-4 weeks.  Now you are desperate for a drug that will give you more time and you have to wait when so much is at stake.  I can't imagine.  Not to mention that this would mean that you were not receiving any treatment during those 3-4 weeks giving the cancer time to spread.  I would much rather be waiting to hear now when so much is not at stake.  At least I will know what is in my hand and if I don't have the mutation then I know now and can concentrate on what is in my hand.  I have a scan scheduled at the end of the month to see how things are looking in my chest (lungs) so shortly into the new year I will know what's happening.  I'm feeling really great having no symptoms so hopefully this is a good sign.  I have wound up with a postoperative hernia from my two lung surgeries but we're hoping that this won't require surgery to repair anytime soon. 

Yesterday was a big anniversary for me - 3 years since my brain surgery!  I was surprised again this year when the anniversary of my diagnosis (Dec.9/09) went by without me even noticing.  I remember the date but never think of it on that day.  I guess it's really a time that I don't want to remember.  It's always the date of my surgery (Dec.15/09) that I really take notice and celebrate.  Yesterday I felt so thankful once again for all of the surgeons and surgical staff that took care of me and saved my life.  I wondered if they know now that I am still alive and doing great!  I know that the feeling at the time was that they were just giving me a bit more time so I wonder if they really know what they did for me and my family.  I have celebrated 4 christmases since then with my family.  4 christmases that we weren't sure that we would get to share together.  I wish that I could tell them all how much we appreciate what they did and how grateful we are to them.  I feel very thankful to all of my medical team - Oncology, Neurosurgery and Gamma Knife teams.  Together they have given me the most amazing gift of time......

Watching the news in the last couple of days has really been heartbreaking.  So many families grieving.  I can't even begin to imagine what they are feeling. To have Christmas quickly approaching and to be dealing with such loss my heart goes out to all of them.  I will be praying for all of these families.  I will also be cherishing every moment with Jeff and my boys and will be giving them extra hugs and cuddles.  We really need to slow down to enjoy what we have all around us. 

I feel in my heart that the new year is going to bring peace and healing.  I am putting this out there for everyone in the hopes that whatever is happening in your life you may begin to heal and feel the peace in your heart that you deserve.  I wish you all a very Merry Christmas with your loved ones and a New Year full of promise, hope and of course great health!

Cheers!
Natalie

Cancer/family/work - finding a balance

So doesn't the saying go that when one door closes, another one will open?  I sure hope that is true....

I have to admit that the last month has been a rough one.  I was looking back at my last post and find it very ironic that I was talking about how grateful I am to be able to work and how important it is to me and here I find myself back on sick leave.  I'm not really sure where to begin or how much I should really be discussing on my blog.  Will anything I say come back and negatively impact me.  Is honesty ever a bad thing? 

I will say that I have had to step back from work now finding this a very unsupportive and insensitive environment for me to work in and to be in.  My employer was trying to force me to come back full time without the previous work from home accomodations which were working out very well from both sides according to my supervisor.  Apparently, the work from home accomodation was only for a 3 month period and they will only accomodate for very short periods so that was the end of that whether my doctor agreed or not.  (which he didn't)  My doctor had written several notes to my work in the last few months and now I find out that none of these were acceptable according to my work.  They were fine at the time but all of a sudden not anymore.  Maybe this has something to do with the new HR manager which was recently hired at my work...  The stress of having to deal with this on top of my medical situation is simply too much for me at this point.  This is the worst that I have felt since the day that I was diagnosed - anger, sadness, frustration....  along with unworthiness, fear of dying (do they not want me because they think that I'm just going to go and die anyway?) Is my best not good enough?  Should I just be sucking it up and pushing myself as far as possible for them?  Pretending that having cancer doesn't affect me both physically and emotionally.  Fortunately, I had just had a performance appraisal done recently which was great so I try to remind myself that it is not me....  They just don't understand. 

This has all made me take a hard look at the reality of my life.  Why is working so important to me?  Well, it's because it makes me feel normal.  It convinces me that although I have a shitty diagnosis I am OK right now.  I feel that I can still be productive and that I still have a lot to offer the world.  Just because I have cancer does not mean that I can't do my job and I think that I've proven that at work over the last year.  They want to know way more than what I can possibly tell them.  It's hard for me to say that I don't know what will happen.  I live day to day hoping for the best trying to live every moment in the moment.  I can't look too far into the future because it scares me.  I know that I will miss out on so much of my life.  Will I be here to see my boys grow up?  Birthdays?  Graduate?  Decide on their careers?  Get married?  Have children?  Chances are I won't be here for some of these events.  I feel that in ways my work is throwing this in my face and forcing me to jump ahead and think about some of these really tough things which I wasn't ready to do.

So, lately I'm finding life very hard to cope with.  There are days when I don't even want to open my eyes, let alone go out into this scary, harsh world.  I feel beaten down.  Like no matter what I do I can't get ahead.  I have had to pick myself up and put the pieces back together so many times over the past few years that I'm feeling exhausted from it.  Yet I have no choice.  I'm going for my brain MRI in two weeks to find out if the newly treated tumour has shrunk and if the previously treated tumour has shrunk more.  Can I handle hearing any more bad news?  Will another tumour show up on this scan?  There's so much uncertainty that I feel completely overwhelmed sometimes.  When I was at work I could focus on other things and push ahead feeling successful with whatever I was doing. 

Financially, things are better and easier with me working.  We have to be realistic about this and prepare for the time when I am no longer here and my income is lost.  I don't want the family at that time to have major financial worries.  They will have enough worries....  I can't imagine the kids losing their mom, then having to pick up and move somewhere else because Jeff can't pay the mortgage on his own.  Change schools and move from their home in the middle of everything else.  That is one of my worst fears.  I've heard that there has been a lot of talk in the media lately about the financial issues that families going through cancer have to face.  The government is looking at this from a provincial and a federal level and planning on making some changes in regards to this.  I look forward to hearing more about these plans.  I would say that maybe allowing their employees who have cancer and who would still like to work keep their jobs would be a really great start!  (I work for the provincial government - go figure)

I am grateful that I had the chance to go away to Vancouver on a retreat with the Callanish Society.  It was amazing!!  It's difficult for me to put into words this experience.  I learned so much about myself and with everything that I had to deal with when I got home this retreat couldn't have happened at a better time!  It opened me up and let me express some of the feelings that I was trying not to feel or think about.  I felt so well cared for and they taught me how to take better care of myself.  Whether it's taking the time to relax and have a cup of tea or going for a nice walk.  Taking time to listen to what I need and give myself permission to have whatever feelings I am experiencing.  I must admit it was very hard coming back to reality - this crazy, fast paced world that we live in.  Coming from the peace and quiet up in Brew Creek into the Vancouver airport was sure an adjustment!  I loved every minute I had to spend with the other 6 amazing survivors, all of whom I had the opportunity to connect with during these 4 days.  I learned a great deal from all of them and know that we are friends for life.  Our time together was filled with relaxed chats around the fire, hiking through our beautiful surroundings, hot tub time, art time (which I surprisingly really enjoyed!), nourishing & delicious food made with lots of love, yoga and lots of relaxation & meditation....  I came away with a new found connection with myself and compassion for myself.  Opening up in this way leaves you feeling very vulnerable and that can be very scary but I find it all worth it in the end because I feel like a stronger person.  This couldn't have come at a better time.  I even met up with a friend at the airport for a coffee who I met a couple of years ago through YACC.  It was so great catching up with her and being able to debrief with someone who had been through it.  It was the perfect ending to a perfect weekend!

I had the opportunity to go in and speak to a couple of groups of medical students last week.  I shared my story with them and had some discussion about my experiences with cancer.  I think it went really well and I find that the more I share my story the easier it is.  I felt completely comfortable opening up to them and wow - they had some really great questions!  They looked so young!  Hard to believe those are our future doctors!  The assignment they were given after we left was to write a letter to themselves which would be given back to them when they graduate about what kind of doctor they would like to be.  So cool!  They were so eager to learn and understand things from the patient's perspective.

Everything going on with work right now has made me realize how lucky I am to have such amazing and supportive family and friends around me.  I have many more people on my side helping me through this then those that are making things more difficult for us.  I am so fortunate to have all of you in my life reminding me what is really important in life - which is all of you.  Hugs when I feel hopeless, an ear when I need to vent, advice (especially HR related these days) when I have no idea what to do, air miles when I need to escape on a retreat and have no airfare, cab fare and food money slipped into my pocket on the way to the airport, surprise pedicures when I'm feeling really down, scooping me up off the floor when I'm drowning in a pool of my own tears and reassuring me that everything will work out, drinking wine with me when all I want to do is forget everything and not care anymore.....  I am thankful for all of this and most importantly, a husband who can handle looking after things when I am not able to and three great boys who I know will grow up to do and accomplish amazing things in this world even if I am not around to see it.  People are what matter most - period.  This is what makes life memorable and worth living. 

I'm not sure what is going to happen next week or next month but I know that for today I will live a meaningful life and enjoy every minute of it.  Moments where I can say and believe that it is all worth it like last night sitting around a cozy fire with my hubby and my boys playing guitar and singing.  I have that memory forever now and when I'm feeling down I can remember that and feel my heart fill up with joy and love.  Life is made up of these moments if we take the time to notice them....  if we don't they pass us by unnoticed and gone forever....

Happy Thanksgiving!!

I hope that everyone is enjoying their Thanksgiving!  It really is so nice to focus on all that we are thankful for and recognize that even if things aren't going exactly the way that we want them to in our lives there are always wonderful things to be grateful for.  The whole family got together last night for a yummy Thanksgiving dinner at our place and it was so nice getting to spend this time all together.  The kids are growing up so quickly and I love to see them all hanging out together and having fun! 

We are very grateful for a few months of non-cancer time as I am not going in for any more tests or appointments until November.  I was hoping to stay away from hospitals during this time but unfortunately I have wound up there a couple of times in the last month.....I had a dizzy spell at work which ended up to be nothing serious.  They did a CT scan and it didn't show any changes in the brain so that was good.  It was thought that maybe I had been overdoing things, not keeping hydrated and needed to slow down a bit.  So that's what I did but as I was climbing up in my closet a few days later I fell and broke my foot.  So...... back to the hospital we went were it was confirmed that my foot was broken and I had torn a couple of ligaments in there.  This has forced me to slow down since I have been in a boot cast for the past 3 weeks.  It seems to be healing very quickly and I am looking forward to getting rid of this boot for good.  

I find it difficult to go in to get treatment for non-cancer things since I really don't like going through my whole history every time I go in.  I try to just slip it in when they ask about my health like it's no big deal.  Oh yeah and I have Metastatic Melanoma...  As soon as they saw my chart then the questions came up like "Were you dizzy when you fell?"  "Were you aware when you fell?"  "Do any of the treatments you were on cause bone weakening?"  It's like when you have cancer you have to explain every normal thing that happens.  No, I was stupidly trying to hoist myself up to grab something and missed.  Period.  That's it.  It's not like when you have cancer you are exempt from all the normal illnesses and accidents that happen to people.  Those things happen to us too.  My niece's response to hearing about my fall was "Does Auntie Natalie know that she is not a child anymore?"  LOL!  How many times have I told the boys not to climb up on their shelves for things?  I just learned this lesson a little later in life I guess.

I was fortunate enough not to have to take any time off work during the last few weeks.  I was able to work from home during this time which has been great!  Being able to work is very important to me.  I didn't realize how important until I was told that I would never be able to work again when I was first diagnosed.  It makes me feel independent and like I am contributing to something.  Since my kids are all in school now there is no point in me sitting at home all day.  I just feel better about myself and hopfully I'll be able to do this for a very long time. 

I am very excited about my trip to Vancouver this week!!  I am going on a 4 day Callanish Retreat for young adults.  I have been wanting to go on a retreat with Callanish for the last couple of years and finally got an opportunity so I jumped at it.  This is a healing retreat and I am looking forward to having some time to reflect on all that has happened and find some peace and strength from this.  I am a little nervous about travelling this far on my own since I have never done this before but at the same time am feeling that it is just what I need right now.  So, Vancouver here I come!!!

I hope that you all enjoy the long weekend with your loved ones!
Happy Thanksgiving!!!