Balancing life and loss

I can't believe it's been months since my last post.  So much has happened that I'm not even sure where to start! 

Our trip to DisneyWorld in June was amazing!  It really is a magical place where you can forget about your worries for a little while.  We made so many great family memories that we will have forever!  It would have been even better if we hadn't picked up some sort of flu but we paced ourselved and by the end of the week we had made it to almost everthing on our list.  We are very thankful that we had this very special time together and we are grateful to everyone who helped make this happen for us.

While in Disney I got the news that a very special friend of mine had passed away.  Part of the reason for my lapse in writing is because I've been finding it very difficult to sort out all my thoughts and feelings since then.  I knew that she was really ill before I left but felt stunned and shocked at hearing that she was gone.  Watching the fireworks that night I felt her with me and knowing that she would want me to cherish this time with my family I was able to hold her in my heart and enjoy our time away.  It has shown me that you can feel grief and loss and still have room for some happiness and joy.  Gill's friendship really meant alot to me and I miss her every single day.  Many days have been difficult knowing that she is not here.  She faced her illness with such grace and strength.  We had many Skype conversations full of meaningful words as well as lots of laughs.  My heart goes out to her family, especially her amazing husband who always took such good care of her.  Her spirit will stay strong in my life as well as in the lives of many others.  xoxo

Our summer has been full of ups and downs.  We have been able so spend some great times with family in the past couple of months.  Our annual trip to Kenora with the Lindsays was awesome as always.  The kids always have such a great time there!  Caramel too!  We made it up to see the family in Swan River and celebrated Jeff's grandma's 90th birthday! So inspiring to see her still living such a full and independent life!  We've had some really fun pool party days this summer too!  I love that we are making a point of getting together with family to stay connected instead of just at big occasions like Christmas.  Makes for some really nice visits.  We celebrated Tyler and Gavin's 15 and 12th birthdays!  Can't believe the boys are growing up so fast!!!

So the end of summer seemed to creep on us and before we knew it back to school was here!  All three of the boys have settled back into school and everyone is happy with their teachers and classes. It's looking like it will be a great year for all.  Hockey is back in full swing so back to the rink we go!

That is pretty much a summary of what we have been up to this summer.  As far as my health goes things have been stable.  I'm still on the same chemotherapy treatment.  My scans in July were very positive showing further shrinkage of the tumours.  It also showed that the one in my adrenal gland is now undetectable so as far as I am aware the only tumours left are in my liver and they have all shrunk in size.  The ones in my brain have been stable since my last gamma knife treatment.  I am tolerating the vemi fairly well being able to manage the side effects with medication and also by taking good care of myself.  I usually know what kind of day I'm going to have when I wake up in the morning so I can plan accordingly.  I started working out at the gym again and this is really helping me keep up my energy.  Some days I feel fantastic!  Other days I spend resting and doing my best to get through.  I have learned not to harp on it.  It is what it is and so sometimes  my body just gives in to the toxicity that the drug brings.  I am due for more scans in the next couple of weeks which will tell us if I am still responding to the vemi.  We are keeping our fingers crossed for some more good news!

I am very grateful that although I do have my bad days, I have some really fantastic days too!  The girls and I went with my niece Rachel to pick out her grad dress.  She is so incredibly gorgeous inside and out.  We are all so proud of the amazing young woman she has grown up to be.  Having all boys this is something I will never get to do with them so it was a very special day.  (And we all actually agreed on the same dress in the end which was a bonus)  Jeff & I have had some really great days by the pool with the boys too!  They can spend hours just swimming around making up silly games and competing for the best dive.  Kaden learned how to swim the length of the pool twice under water this year without taking a breath, which when the adults tried to do, we all failed.  I went with Kaden on the grade 4 field trip this week and had so much fun.   On Friday my sister and I went on a road trip to the Petroforms in the Whiteshell.  We had a really great day.  If you havn't heard of this amazing, peaceful place it's definitely worth the trip.  After soaking up all that great healing energy we had our great lunch that we had packed and headed to check out the suspension bridge close by and made our way to the rapids.  We stopped to take some crazy jump shots which was quite hilarious.  After many, many attempts we finally got a few half descent ones.  What a fun way to warm up on a cold day!  A big thanks to Mikey and Bonnie who introduced us to this fun idea!  It has become quite the challenge!! 

This summer I also had the opportunity to talk about sun awareness and living with melanoma with CBC  news.  I did this interview hoping to raise some more awareness of how to protect ourselves from this disease.  If one person saw this and made the decision to skip the tanning beds or decided to slap on some sunscreen this summer at the beach I am happy.  I am meeting more and more people all the time who are unfortunately being diagnosed and being consumed into the melanoma world.  It is not a  place that you want to be.  Trust me. 

This is my absolute favorite time of year!  Fall to me brings such comfort.  I always loved playing out in the leaves as a little girl and that hasn't changed.  I love getting ready for those cozy winter nights.  We've been busy bringing in the garden veggies, freezing, canning salsa, baking cinnamon buns and cookies....  I just love being at home with the kids and being able to do these things right now.  I went and signed Tyler up for Driver's Ed the other day and it really dawned on me how grateful I was to be here to do that.  It brought me a lot more hope thinking that those things that I've assumed I wouldn't be here to see or do with the boys, I just may!  I take none of it for granted.  It's been almost 4 years since my metastatic diagnosis and there has been so many really awesome things happen since then.  The boys were 5, 8, and 11 - they are now 9 (well almost), 12 and 15.  There has been a lot of living during this time and I am thankful for it.  So although life is far from perfect and the struggles of dealing with this disease (for the whole family) can be so overwhelming it is all so worth having every day of it! 

This one is for you Gill.  You will live in my heart every day and I will always remember and cherish you!  xoxo

Thankfulness & Exciting Adventures!!

Finally, it looks like summer is here!!!  Time to get out into the yard and start thinking about what to plant this year.  I can't wait to get some seeds in the ground for those yummy, fresh veggies. 

I'll start with how well gamma knife went....  It was great!  Now people laugh at me when I say this but I can't even describe the relief that I felt finding out that my tumours are shrinking!  Like I said in my last blog I was very nervous to have that MRI done just before my treatment because I wasn't sure what these tumours had been doing over the past several weeks.  The neurosurgeon came in to the room and asked if I was on any chemotherapy because they were having trouble finding them on the scan.  The MRI showed that the largest of the two tumours was undetectable!  Gone!  The other tumour was still there, but teeny tiny and a new tiny tumour was detected.  This new one, once they looked back on my previous scan, was actually there but was so small that it was missed.  These two small tumours were easily treated and I was back home before noon. 

We were thrilled with this and I was anxious to have my CT done of the rest of my body to see if the rest were responding the same way.  I had my CT done last week and spent the weekend agonizing over what the results would be.  It is so hard when you are waiting to hear such important information.  Would the Vemurafinib be working as well on the rest of my body?  I had a dream on the weekend that despite being on chemo, the cancer had spread even more through my abdomen.  I woke up terrified and it took me a few minutes before I realized that it was just a dream.  I can't stand those dreams that feel so real that when you wake up in the morning it's like you lived it all through the night and so you feel exhausted.  This happens to me often and I guess is my way of letting my fears out.  Because of this I decided that I would be more realistic with my expectations for this scan.  I couldn't help but hope that all the tumours would be undetectable on the scan and that they would tell me that I was back to No Evidence of Disease.  I am missing Ned!  I changed my expectations to hoping that nothing new would show up on this scan and that the tumours were stable, not growing in size.  At times it is so difficult to get in to the mental head space where you are hoping for the best but at the same time prepared for the worst case scenario. 

So we were very happy this morning to hear that I am responding to the Vemurafinib with all tumours shrinking and one in my chest has actually resolved.  Many of them have shrunk to half the size as my last scan!  This news I can be very happy with!  We spoke to the doctor a little more about how the trials are looking at this point, as this drug is so new that they are still uncertain of long term success rates.  There are a group of patients which are still responding after 24 months with the average length of response being 6 months.  My doctor is holding another information session in a few weeks, once he's back from his conference, to share the new treatments and advances being made.  Will definitely be going to that!  Information is power! 

It's sometimes difficult for us to feel that we are getting anywhere with the treatment of cancer.  People are still getting diagnosed every day, still going through difficult treatments and surgeries, and are sometimes still dying.  It's hard not to wonder if we keep pumping more money into cancer research will it really make a difference?  Where does all the money go?  Why is it taking so long?  My kids have even asked us all of these questions.  I really don't know the answers but I do know that it IS making a difference.  It sometimes just feels that we are making baby steps.  But, I can personally say that because of cancer research I am still alive.  Surgery and Gamma knife saved my life giving me more time.  That time has enabled me to be here while they have researched and developed the new drug that I am now on which is right now keeping my disease under control.  This is not only giving me more time to be with my family and to watch my boys as they grow but it is also giving the researchers more time to develop better, longer lasting treatments.  I think that it is important to look at these steps and to see how far we have come even in recent years.  I am very thankful to everyone who helps raise funds to help in the fight against cancer.  Whether it's walking, running, cycling, climbing, horseback riding.....  The list goes on and on and sometimes we get a little tired of donating our money only to wonder what difference it will really make.  Trust me, it does make a difference!  We may not be talking a cure yet, but it is definitely making a difference with the management and treatment of cancer.  So a big thank you to everyone out there who is getting involved and making a difference.  With this, the day will come when cancer will become a very treatable illness!

In one of my previous posts I talked about travelling and how much I would like to do some travelling with the family in the near future.  We have been doing some planning after talking to my health care professionals and it is going to happen!  The Love family is on our way to Disney World!!!  :)  The boys were very disappointed when I was strongly cautioned about traveling out of the country but because of the fact that I am doing well right now we are going to go for it!  I did also find out that I do have full travel health coverage in spite of my health condition now so we don`t have to worry about that.  We are getting a lot of help from family in order to make this happen and are overwhelmed with how much everyone is wanting to help make this trip very special for us.  Everything has just fallen in to place as things do when they are meant to be so although, this feels a little last minute I know that it will be amazing!  I can`t wait to see the boys faces as they enjoy every minute of Disney.  They are even excited just to fly on an airplane so I can`t imagine they`re reactions as we experience the fun Disney has to offer!!!!

Well, I`d better get packing!!
Hope you all are enjoying the start to summer and are doing what you love!!

xo   Natalie

Fun Times!!

Hi all!

Where do I start?  I can't imagine life without the fun and good times that somehow we are able to make happen these days.  Would we make a point of getting together, spending these good times together if it weren't for cancer?  It's one thing to get together on holidays or special occasions once in a while but to have a party to celebrate a break from chemo?  Is that normal?  I'm not sure but it was sure fun!  A few weeks ago we were sitting and watching my oldest sister's wedding video and we were remembering how much fun weddings are.  Everyone dancing, happy, music, drinks, kids falling asleep on chairs....  We decided that this is exactly what we needed right now!  Except with no weddings being planned in the near future it looked like it wasn't going to happen.  Sometimes we sit around and come up with these great ideas but then nothing ever comes of it.  Well, when cancer is a part of your life sometimes you can't just dream about having fun or wait for the perfect time to have fun, or hope that someone is planning a fun time and you will be invited.  Sometimes you have to drop everything and just make the fun happen! 

So my family planned a dance party for the following weekend "Just Because".  It was a fantastic idea and although last minute was perfect timing.  This time of year people find themselves feeling blah.  Snow still falling outside, wondering when Spring will finally arrive.  It was nice to break things up.  Since I was off my medication for a couple of weeks I was feeling great!  My family was very happy to have our family and friends come out to have fun but also show their support.  It was a nice reminder that people care and are there for all of us!  Several times during the night I looked around and felt so amazingly happy and lucky....  And I kept my boots on until the very end of the night even though my feet were killing me! 

The following week I was back in to see the doctor and was happy to hear that my blood work had returned to normal.  It is still a mystery as to the exact reason why my counts dropped so low.  Possibly a viral infection but hopefully not my body's response to the drug itself.  The doctor decided to start me back on the Vemurafinib again, this time on a bit of a lower dose.  Jeff and I had been going back and forth about all of us going down to Grand Forks for Kaden's hockey tournament the following weekend.  We decided before going in for this appointment that we would discuss the possibility of postponing chemo so that we could all go without being worried about me getting sick. We decided that starting chemo on the Monday would be just fine and the doctor wasn't worried about postponing for a few days so this is what we did.  We had a great time and Kaden had a blast playing hockey!  We were so glad to make this trip happen as a whole family.

So when we returned home on the Monday I started chemo again and by Tuesday I had a rash again from head to toe.  I couldn't believe how quickly it just popped up!  We have gotten this under control and it seems to be OK now.  Another annoying side effect so far is this joint pain that I'm having a hard time with.  My mom has rheumatoid arthritis so has been so helpful in giving me ways to deal with this.  Hopefully this doesn't last since I've been feeling like a little old lady hobbling around.  It turns out this is a common side effect of this drug.  I have been getting out and walking every day which has been helping so far so fingers crossed that this won't become a real challenge.  We have once again had the flu in our house!  This year has been especially bad for that with our family.  We all ended up taking turns and now I am hoping that that's it!  Just starting chemo and getting the flu is not fun.  It's an added stress to worry about keeping the medication in so that we can see some results.  Hopefully we don't see the flu again for a very long time!

This week I am scheduled to go in for Gamma Knife so I'm getting a little anxious to have that done and to find out how things are looking up there.  It has been a while since my last scan so hopefully we are relieved with the results.  The following week I will be back in to see my doctor and we will be scheduling some scans to see if the Vemurafinib is working well like we hope.   We'll have to plan something fun to make this wait go by quicker!!  Waiting for results is so brutal for all of us!!!!  Especially when so much depends on them!  Having things to look forward to is making all the difference right now.  My friend took me to see Bon Jovi last week and we had a blast!  This was the 3rd time that Lea-Anne and I have seen them together since we were teenagers!  What a great night! 

Feeling very grateful for all of these amazing moments both with my friends and my family.  Lately, it feels as though every hug and every laugh I share with someone gives me more strength to overcome what I need to.  Today life is great so it is a time to take advantage of the day and do something memorable.  Time to get out there and grab on to the day!!!

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