Monday, September 3, 2018

Make a Memory

Today is September 3, 2018 and would have been Natalie’s 43rd birthday.  Before she left us, she tried to write her last blog but she simply ran out of time.  She asked us to write one last blog for her.
What would Natalie want all of you to know?  I think if we are to remain true to this blog, she always gave everyone an update on her health, then she’d leave us all with some hope and something to think about so we would really embrace our lives.

In January Natalie started to experience pain in her side and back which as the weeks passed, we eventually found out were bone metastases.  Truth be told Natalie always thought this would be the most difficult experience.  We remember her talking about meeting people who were living with bone mets and how she would be telling them that was her worst fear about cancer and then they would laugh and tell her that they always thought brain mets would be the worst.  I guess there is always going to be something that we fear in anticipation but when these things become part of our journey we just move on day to day as we always have.  We never know how we’ll handle something until we are faced with it.  Natalie handled this like everything else, with grace, humor and love…..and the occasional shot of Jaeger or her new found favorite….salted caramel Baileys Irish cream for a night cap.  Natalie continued to care for her family and enjoy the little things in life.  

In February we started to care more for her, first at home…..she did plan and orchestrate a lovely picnic for the girls for Valentines Day.  “Any excuse for a picnic” it didn’t have to be nice outside. Shortly after that lovely day she moved into the beautiful palliative care room at Stonewall hospital.  She quickly made it feel like home with her meditation corner with space for her dolls from Callanish, her Himalayan salt lamp, special stones form YACC retreats and her diffuser.  Everyone commented on how nice her room smelled which just illustrates the power of our sense of smell and the connection it has with our memories.  We remembered our Grandma from the smell of Avon lipstick or moth balls!! Natalie’s favourite was the peppermint oil she would dab along her hair line to help with the headaches.  Many of us will be flooded with memories from a whiff of peppermint oil and can’t help but smile. So many friends and loved ones sent texts, videos and love from across Canada as she lived those last days.  Her boys were able to visit often, sneaking in for cuddles in the middle of the day, because she was so close.  Jeff and Natalie continued to show us what real love can achieve.  Through the craziest of times, there was still laughter and such love.  She had family movies playing on her television and lovely music in the background and her room was filled with love from family, never alone.  On March 14, as the sunlight filled her room, Natalie took her last breaths in a loving embrace of her family.  It was as she had pictured it, soft, peaceful and surrounded by love.

Natalie never stopped living.  Up until her last few days she was trying to make plans, for herself and for us.  She would plan meals.  When the mystery fish arrived on her hospital tray, she looked at dad and said; “You know what would be really great?...  pickerel.”  Everyone laughed, but when the health care aid came in, she said, “You can take my tray, we’re having pickerel tonight.”  So off Dad went for fish and chips.  She planned most of her Celebration of Life.  When she was choosing the music and the food, she had a huge smile and said, “It’s going to be quite the party, I wish I was going to be there.”  When choosing the music she said you need to dance.  We told her, “There will be no dancing that day, but maybe in the days to come.”   

And there has been joy since that day.  Natalie had spent time learning how to really live amongst all this chaos on this cancer journey.  She taught us how to appreciate and participate in this life we’ve been given.  So as we move forward we are feeling such sorrow but are still able to find joy in our lives.  We know one of her greatest fears was that we would not be able to put one foot in front of the other.  She worked very hard to make sure we were not going to let that happen.  Natalie had participated in a process called ‘Dignity Therapy’.  She left us a legacy of her hopes and wishes for her family.  We try hard to move forward in a way that respects her wishes for us and reflects all that we have learned over the last eight and a half years.  In so many ways we feel that she is present beside us as we move forward.  

On August 18th we interred Natalie’s ashes at the Stonewall Cemetery.  
Mom wrote the following words which Dad read out that day:

Natalie is always with us. 
She’s the whisper of the leaves as you walk down the street.
She’s the smell of baking cookies and cinnamon buns. 
She’s the cool hand on your brow when you don’t feel well. 
She’s the sound of the cheering at the hockey game. 
She’s the beautiful colours of rainbows and dragon flies. 
She loves Christmas and the sound of our laughter. 
She’s always beside us, helping us along our way. 
She is our loving angel. 
She’s in our hearts forever.

We do feel Natalie's presence, continuing to be a part of our lives and hope that you open yourself to feel her presence in the lives of all she loved. 

We'd like to leave you with one of the last wishes she left for us:

Find your peace and breathe.
It's that simple.  

Natalie had chosen the following songs for her celebration of life:

Take Care,
Laura and Christine

Saturday, December 9, 2017

Finding Support & update

I've been wanting to write a blog about the support that I have found through the years and how it has helped me through some of the most difficult times of my life.  I came across some journaling that I had done while I was at my very first retreat.  Reading through this was a great reminder of how far I have come since then.  I do often talk about my friends and family and how much their support means to me and also my health care team and how they support me.  There is also another area of support which has helped me tremendously through the years and my journal was a great reminder of this.

My cousin was going to a retreat in BC for young adult cancer survivors and asked Jeff to go with him as his supporter.  Jeff went along and came home having had an incredible experience.  Not only did it benefit my cousin tremendously meeting these other survivors and supporters and feeling less isolated and connected to this great group of people.  It had a huge effect on Jeff as well.  Several months later we found out that my cancer had come back and metastasized.  Jeff really encouraged me to look into going on one of these retreats and so a few months after my recurrence I was on my way to BC for my first Young Adult Cancer Canada retreat.  It would be one of the best and important decisions I have ever made.  My sister came with me as my supporter and I have to be honest, I was super nervous.  It really took me out of my comfort zone and I was so glad that she was willing to go with me.  I was so unsure of what to expect.  What kind of group was this?  Were they going to brainwash me?  lol  Would it be some kind of crazy cult thing?  I really wasn't sure what to expect....  I can't imagine if I never knew anyone who had gone before and knew a bit about it.  Anyone who puts themselves out there is really brave.

We took a bus out to the retreat space where we would be spending the next 4 days.  I was already starting to feel comfortable just meeting a few people and the organizers and facilitators who are amazing and so great at what they do.  I wasn't used to talking openly about all of the pain and heartache that cancer brings into your life.  One day we spoke about the losses that we experience because of cancer and we were writing them on our rocks.  I got to the second rock and all of a sudden the grief all boiled up inside me and I ran out of the room embarrassed.  I hid in my room and bawled making noises I didn't even realize I had in me.  I realized that I had been holding all of this in and just trying to be positive.  I was trying to just focus on what was good in my life and pushing away from the other feelings that were there.  I was so afraid of what was to come, of losing my identity, my dignity and my hope.  One of the facilitators came in to comfort me and just hold me until the crying and shaking stopped.  It was the moment I could begin to heal; maybe not physically but emotionally.

Over these four days I learned so much about myself, I was so inspired by the wise survivors who I  met.  I watched an epic film called Wrong Way to Hope  which changed the way I looked at living with cancer.  Breaking limitations, believing, finding peace, hope & understanding were now things that I was moving toward.  This retreat changed my life. Here's a link to the YACC website....

My roommate had just been on a retreat through a different organization called the Callanish Society.  Some of the facilitators were on my retreat so I got to meet them and my roomie thought another retreat for deeper healing would be right up my alley and she was right.  Thanks so much for that!  It took me a couple years to get there but I found myself on a retreat looking for more answers.  Wow!  What an amazing experience!  I'm not going to pretend that it was easy putting myself out there but it was so worth it.   Through the week we would do different sessions which would help us to work through different areas in our lives.  I can't even put into words how amazing these survivors have been to me in my life over the years and retreats that I've been lucky enough to be able to attend.  It has completely transformed the way I've been able to live my life and I will  be forever grateful for these people in my life!  I was able to attend a retreat a few years ago with an inspiring group of women which was turned into a beautiful film.  Here's the link if you want to watch.....  I have learned so much from the stories that I heard and the way that others were dealing with living this disease - and not just living but living really well.  These ladies will always have a special place in my heart.

Today marks 8 years since we found out that I had metastatic cancer and would need urgent brain surgery. So hard to believe that I was given such a poor prognosis at that time, getting escorted from CT by Neurosurgeons in their white coats with my mom.  These last 8 years have been such a gift to us.  Being here to see my 3 little men grow into these awesome teenagers is such a miracle.  This has always been the hope - more time.

So, a little update on the latest.....  I had a scan a few weeks ago and it showed that the cancer has progressed in the brain since radiation.  Since I no longer need care from Cancer Care I have been getting treated by my family doctor solely.  It's always difficult when there's a shift like this in your treatment but once again my team has made this transition very smooth.  Saying good bye to my oncologist and nurse was difficult after being connected with them for so long but I know that they have done everything possible that they could.  I'm so thankful for my doctor who kept me healthy for so many years through medicine and became part of the family (my family even slipping and calling him Uncle Wong at times) lol... and the nurses who each played such a huge role in my healing; angels I believe that were sent to help me through different stages of my journey.  Once again my doctor and nurses through Palliative Care are so supportive and amazing and I feel have been brought into my life for a reason.

And so we continue on day by day living one moment at a time.  I'm actually feeling quite well and so have been able to continue on living pretty normally.  Of course, there's good days and bad days and a lot to think about and plan for but since these thoughts have been here for a long time it makes things a bit easier.  We still feel that no one really knows what can or will happen.  We've learned to expect the unexpected over the years with no one ever being able to guess what will happen so we're going to keep with that idea. I've been spending a lot of time with my family and this has been priceless.  Christmas is such a special time of year and always has been for us.  Having the holidays to focus on is wonderful!  As this season comes I hope you can all take time for yourselves and your loved ones and just breathe it all in!
xoxo Natalie

Saturday, October 7, 2017

Happy Thanksgiving!

Time is sure flying by!  Can't believe that Fall is here!  This is my favorite season since I love being outside with the changing leaves.  The boys are all back to school and getting settled into to their activities.  Thanksgiving weekend is a great time to sit back and really count our blessings.  I'm really looking forward to spending time with the family this weekend. 

We did have a really good summer I although did have to jump a few hurdles over the past couple of months. I have been recovering well from the radiation and my hair is even growing back a bit.  We have had a few scary days where I was experiencing some symptoms.  I woke up one morning and knew that something was going on.  I was having a lot of pressure and pulsating happening in my head and was feeling very unwell.  I called Jeff and was having trouble getting my words out to him. So frustrating when you can't communicate properly.  We decided it was time for a trip to the ER to find out what was going on.  By the time we got there I was able to find my words and the pressure and pulsating had started getting better.  I was seen pretty quickly after passing the stroke protocol tests, thank goodness.  A CT scan showed that there appeared to be a blood clot in my brain.  They weren't entirely sure if this was what was causing my symptoms or if this was an incidental finding but they were quite concerned.  After finding out from the ER doc this new diagnosis the neurologist and his team came in to explain things.  Normally, this would be treated with blood thinners but since I already have some tumours in the brain which are bleeding, they didn't want to do this in fear of causing more bleeding.  We have been told so many times that we are stuck between a rock and a hard place that my friend was joking about getting t-shirts made....  We know.... we're stuck between a rock and a hard place!!!  So basically there was nothing they could do and I went home to monitor my symptoms being told to come back if my symptoms worsened.  Pretty scary stuff!

I was offered the option to go on low dose Heparin injections to hopefully lessen the chances of the clot getting bigger and causing problems but in the end after much discussion decided to wait until my upcoming MRI and see how things were looking.  The MRI actually caused more confusion since it's not easy to compare a CT with an MRI.  So it was thought that maybe the clot looked less prominent but after my neurosurgeon took a close look it seems I would need another CT to accurately compare.  Well, since it's essentially untreatable anyway, there doesn't seem to be much reason to do that.  I have another MRI coming up in November so we'll see.  My scan results never seem to be straight forward sometimes causing more confusion than giving any answers. Some good news was that when I asked what was happening with the leptomeningeal metastases, it seems that it's now pretty much undetectable on the scan. If there is any left it is very faint. So thrilled!  The radiation may have really helped with this.  So all in all the MRI results were positive. I had about a 30% response from the radiation with some tumours shrinking and others disappearing, some stayed the same, no new ones and so a pretty stable scan.  The burden of disease has lessened so we're happy with that!

We are now adjusting to this new normal that has become our life.  So having exhausted all of my treatment options, (we had decided not to push further for the Ipilibumab) I was referred to the Palliative Care Program and have been in connection with these wonderful nurses over the last few months.  I want people to know that being in palliative care does not mean that I am dying or that I have given up.  The whole idea of palliative care has really changed over the years.  It's about living as well as I can and having the support and services to live well and to live at home as long as I can.  Also, helping me make decisions that are best for both myself and my family.  My GP has made this phase of my illness so much easier as he's so good at having these tough discussions with us and guiding us along the way.  I know I often talk about how great my health care team is but especially over the last several months I have felt so supported and really taken care of.  My oncologist is heading to a conference shortly and will bring back any new information or treatments in the works in other countries.  Feels good that I'm not being written off or ignored.  My nurse is so incredibly compassionate and understanding and so good at her job that I know when new symptoms pop up (and there have been lots of them) she is just a phone call away.  They have all been so caring and willing to do anything needed to make things easier.  I am very thankful for all of them!

If you've ever had to go to the ER, which most of us have at some point, it can be quite a hectic experience.  This last time was no different for me.  Spending hours lying in a bed, being poked and prodded, scanned and examined repeatedly is not fun.  The one upside - Jeff & I were being entertained by the ladies on either side of me.  We had the lady on the left yelling constantly and saying that she was dying and the lady to the right of us yelling at her to shut up.  This went on for quite a while until the lady to the right apparently had enough and yelled "You WILL be dead in a minute if you don't shut up".  And that was the end of that.  We didn't hear another peep.  We were trying not to laugh too loud!  The ER is definitely not a very healing place to be.  I realize that I got a diagnoses but because they couldn't treat the clot I really spent the day there for no reason.  I will definitely be trying avoid the ER and relying on my GP and the palliative nurses as things come up.  Not to mention the "healing" food that they give you to nourish your body...  a pork sandwich and a pudding.  I guess it's better than nothing but I really think we need to work on what we feed our patients, people who need real food to help in healing. 

This weekend especially I will be focused on what we have to be thankful for.  There is so much good in the world even in the midst of not only our own struggles but all of the craziness happening around the world right now.  So much pain and heartache, it's hard to wrap your mind around it all.  Yet the love and support that people have shown to each other is a beautiful thing.  I am so thankful for
all of the good in my life, mostly my awesome family and friends. 

Enjoy your weekend and Happy Thanksgiving everyone!!
xoxo Natalie

Monday, July 17, 2017

Hoping for access

Summer is finally here!  School's finished for another year and now we get to enjoy the next two months together! Although, I've already seen the back to school commercials on TV. Like really?  I just love this time.  Summer is always our time to relax, spend time by the pool and with each other.

I finished radiation the Friday of May long weekend and the whole treatment went really well.  The staff in there is amazing.  They made the whole process very comfortable and so super quick!  Couldn't believe what little time it took each day.  I did have some side effects but it was all manageable.  The fatigue is still hanging on quite a bit but I'm hoping this will improve in the next couple weeks.  I was able to join the student physiotherapy program at Cancer Care and they were able to really help me.  They set me up on an exercise program to help with fatigue and with some muscle strengthening.  Steroids really do a number wasting your muscles, and since it looks like I will be on them long term now I want to do what I can to keep strong.  I did try to wean off the steroids completely but was having too many side effects so will be staying on a low dose.  Now that the radiation is finished we are in this wait and see phase.  I have a brain MRI scheduled  in August and we will see where things are then.  I have been feeling quite well so take this as a good sign that the radiation has done something positive.  Fingers crossed!  

I've been sort of waiting to update my blog until I heard about whether or not I was getting access to the Ipilibumab (Yervoy) immunotherapy but here I am - still waiting.  I have been denied so far by the drug company and by Pharmacare.  I'm hoping to hear this week if my private insurance plan will step up and cover the cost.  It has been quite the process since I'm the first in Manitoba to be accessing this drug in the order that I am.  I was put on the Keytruda first so sort of skipped over the Ipi but it does work very well for some people so it's definitely worth a try.  It's a learning curve for everyone involved which is why each step is taking forever.  I feel at this point like I'm just floating around in limbo waiting and hoping for some good news.  It's been taking so much longer than I thought it would so I'm still trying to be patient but that's not easy.  My family is really feeling it too.  Waiting for anything is never any fun!  Especially something this big and life changing.  This drug could give me more time with my family.  Some people have responded really well to it.  Maybe I would too.

We attended the annual Melanoma Information Night this month and there was some really positive information shared.  Treatments are being combined and working together to give patients longer lives.  Stage 4 patients who would have been once told there was nothing more that could be done now have options.  It's pretty amazing for me to think back to that dismal first information night 7 years ago where there wasn't a lot of great information to be shared as compared to 2017.  Wow!  Things have really come a long way!!!  

Although these last couple of months have not been easy ones, there have been so many wonderful moments at the same time.  We have spent a lot of good quality time with the people we love.  I  have had so much love and support from everyone around me!  This is what I am staying focused on while we wait to hear if I have this next option.

I hope this summer brings you all wonderful time with your loved ones.  Lots of love and laughs!
xo Natalie

Monday, May 15, 2017

A New Chapter

Well, I would love to share good news with all of you on this blog but unfortunately this time the news has been very difficult to both process and accept and also to share with my friends & family.  So, I'll just jump right into it.  My latest brain scan came back and it wasn't good.  It looked like I was responding to the new treatment that I was on for a time but this last scan showed that the cancer has progressed and has done so quite quickly.  The tumours have grown and multiplied and the leptomeningeal metastasis has spread into some parts of my brain.  When I first heard this information I was shocked.  I had been feeling pretty good as I talked about in my last post.  I guess the symptoms had sort of been sneaking up on me.  There was some more swelling in the brain so back on the steroids I go.  At least I'll have some energy to get things done around here.  I tend to clean a lot when I'm on them since I wake up at 4 am felling ready to run a marathon.  The LM has been on our radar for many months but usually progresses quite quickly so there was some doubt as to whether or not it was, although my neurosurgeon has always said it was.  But, as we know, my cancer has never followed any sort of rules or really made any sense, thank goodness.  I was given one option for treatment which was whole brain radiation and after much thought and discussion decided to go for it.  The thought of doing nothing was just not for me. This reality has really shifted things for us.  The lingo has really changed.  Quality of life, more time, palliative care and other phrases like this are coming up more and more.  I swing back and forth like a pendulum between being so grateful for the last 7 1/2 years with metastatic cancer and always wanting so much more.  I'm well into my whole brain radiation treatments and actually feeling really good.  I'm done 8 out of the 12 so will finish on Friday.  Yes, my hair is starting to come out but I am planning on going wig shopping very soon to get some new new rockin' hair.  My boys are adamant that they need to be there.  I guess they don't want mom embarrassing them around town!

It's pretty surreal but life continues on.  Made it out to my son's last hockey tournament of the year last weekend.  Radiation in the morning and hockey in the evening.  I always say that life is about balance!  They could have turned the music down a bit but who am I to complain!  Our entire family went away on a family getaway hiking, reading & lounging in the mineral pool this past weekend - all 16 of us.  It was amazing spending that time together!  Time with family - nothing more important!  

Rest assured that I have the most brilliant melanoma doctor taking care of me.  He has been there from Day 1 when I found out that I had metastatic melanoma.  He has gotten me this far because of his expertise and his instincts which have never steered me wrong.  He flies to conferences & meetings around the world always staying front and center of all the new treatments and melanoma research coming available.  He brings that information to Winnipeg in annual information sessions and shares with his patients educating us and always keeping us in the loop.  We have had never-ending discussions in his clinic about what's new and available.  He's always patient with my millions of questions and makes me feel like my opinion matter.  Because he does his job so well I don't need to go out and research cures and treatments.  I can trust in him and spend my time doing what I do best and what's most important to me -  spending time with my loved ones.  So I know that although the thought of some magical cure all for cancer out there in the world can seem within touch, I feel very strongly that I have received and will continue to receive the best possible care available here in Canada or anywhere else in the world.  My health care team is the best and they proved once again over the last few weeks just how awesome they are and I am so grateful for them.

We still have so much hope.  I have always defied the statistics and I plan on continuing to do the same.  Our hope is that the radiation will stabilize things for as long as possible.  I recently had a CT scan of the body done so hopefully that will still be clear.  Will get that news this week.  Fingers crossed!  They are looking into another drug that I may possibly be able to get access too and I haven't tried yet so that is also out there as a possibility.  I sort of skipped over that one because the Pembrolizumab was looking so promising.  That's the thing with these drugs.  They are amazing and bring so much hope to many patients.  The bottom line is though, they either work for you or they don't.  So although I am disappointed that this new drug didn't work for me, I haven't lost hope for other patients or for something new to pop up on the horizon.  You never know in this fast changing field of cancer treatments what is around the corner.

So, we take things day by day enjoying our time together and feeling such love for this precious gift called life.  My boys continue to amaze & inspire me with the way they are handling things.  They are what keep me going every day. It doesn't hurt that I have the best husband in the entire world.  He's there for me and our boys in every way possible keeping a real sense of strength & steadiness in the family.  I am also lucky to have such a close family surrounding me supporting me in every way.  Along with great friends that I am so grateful for.

Since it is Melanoma Awareness month friends - please remember to cover up and protect yourselves from sun damage which can cause skin cancer.  It's not worth the tan!  Embrace the pale, you will thank yourself one day - trust me.  And I beg you to stay out of the tanning beds...  I love this advice that was printed in my radiation information package - Sunbathing and use of tanning booths are NEVER recommended for any person at any time.  Enjoy your time outdoors, just throw on your hat, shades & sunblock!

xoxo Natalie

Monday, March 20, 2017

New beginnings

Figured it was time for another post.  It's been a while.  The holidays flew by and things had gotten pretty hectic.  The last few months have been very difficult ones.  Amazingly though, things have turned around and gotten much better.  Finally feel like I'm going uphill.

The last post I shared that I had been started on steroids to decrease the swelling in my brain and once this was under control I could start up my treatments again.  I was on high dose steroids for a couple months and it worked at getting the swelling down.  I was able to have my next treatment at the end of December which was such a relief and also made me super nervous that it would cause more swelling and I would have to bump up the steroids again.  Thankfully, it was OK and I continued to decrease the steroids until I was completely off of them.  Yayyyyy!!  They were causing many side effects and I was relieved to be off them. Some people have to remain on a low dose long term I was told so I felt very lucky to be able to come off of them completely.  I think I had pretty much every side effect possible on them.  So the last couple of months I have been able to have my treatments on time and it seems that I am responding to the immunotherapy so far.  I didn't mention this in my last post since I was still trying to process it myself but when I went in for gamma knife the neurosurgeon discussed some new findings on my MRI with me.  I was diagnosed with leptomeningeal metastasis which basically means that the cancer had spread into the tissues surrounding the brain.  Pretty scary stuff.  This meant that I was no longer a candidate for gamma knife surgery anymore.  I was shocked and scared shitless.  Gamma knife has been my treatment over the last 7+ years.  It has worked for me and to think that it was no longer an option was terrifying.  He treated the 2 tumours that he could and spoke to me about referring me for whole brain radiation.  We researched this a lot when we got home and read that the immunotherapy drugs could work on this so we held on to this hope and tried to ignore all of the very sad statistics reported online.

I was having bad headaches and a lot of pressure in my heading preventing me from doing my normal every day things.  I spent a lot of time in the house since I wasn't up to doing much of anything.  Things were really going downhill fast and we were very worried that things wouldn't get better.  I was sick a lot and spent a lot of time going back and forth to the hospital.  I missed family birthday parties, my kids hockey games and just being able to get out and about.  After a couple treatments things started to turn around again.  Thank goodness!  I started feeling better each day until I was slowly able to start doing all those normal every day activities that we take for granted.  My next scans were pretty good.  My CT showed that my body was still clear and the brain MRI showed that the tumours had stabilized and guess what?  The leptomeningeal metastasis had cleared.  Unbelieveable!  This meant that the whole brain radiation wasn't needed which is a huge relief as my oncologist was worried about what this would do to my quality of life.  The gamma knife team was blown away!  These drugs are new and it's unknown exactly how people will respond to them.  I have improved so much over the last several weeks that I am able to start working out again  and have so much more energy to do things that I want.  I'm working at boosting my immune system up again since being on the steroids really did a number on it.  Each time I go in for a treatment the side effects are less and less.  Last time I really only had my rash flair up and that was it.  I really feel like it's working since I see a big difference in my side effects.  I had developed a pretty bad tremor in my right hand which was making it almost impossible to do anything with that hand.  It has almost completely disappeared!  I can go for long walks now which I havn't been able to do for a couple months.  It's pretty remarkable to be coming back from this and starting to feel normal again.  I'm actually excited to see what my next brain MRI shows next month.  I'm hoping that the tumours have continued to shrink (2 of them were still quite large) and that nothing new has popped up.

I have been reflecting back on the last few months and am feeling such tremendous gratitude.  I guess to know that things could have gone either way really shows me once again how precious life is.  I am surrounded by really amazing people and they all play such a big roll in my life.  My health care team has really been there and have gone above and beyond what I would ever expect.  They are angels! These new drugs they are coming out with are really exciting, not just for melanoma but for other cancers as well.  It brings more hope to patients for living a longer life.  I look around and am thankful for everyone around me.  I truly believe that people are brought into our lives at certain times for a purpose.  This has sure been an emotional journey but every time I come out the other side I learn so much about myself and about others.  Spring is one of my favorite seasons and this feels like perfect timing for a new beginning.

xoxo Natalie

Here's the Melanoma Network of Canada newsletter where my story was recently published if you want to check it out....

Thursday, December 1, 2016

Living it all

So my hope is that by the end of this post you have some sort of update that makes sense and gives you an idea of how things have been going. There has been quite a lot of changes since I wrote last.  I had a follow up MRI in October and the results were very mixed. The area that was concerning on the last scan has actually improved drastically. The area of necrosis or dead tissue had started resolving on its own which the doctors were very puzzled about and found very odd. How happy were we since this meant that I didn't need the surgery which would have been needed. So glad they waited a bit to see what would happen. Our bodies are very miraculous things!  The tough news was that a tumour on the other side (the left) which had previously been treated with gamma knife had grown quite a bit and I needed to go in for gamma knife again - #6.

The decision to start the new treatment Pembrolizumab was made pretty quickly and a few days later I went in for my first treatment. It was hard stopping the oral chemotherapy I'd been on for the last few years since I felt great on it and it was still working really well from the neck down. I 'm so very grateful that this drug worked so much longer for me than anyone ever expected. This gave the time for them to come out with something newer and better. There has never been any such drug for melanoma to the brain that works this well before so it's very exciting! They say I'm what they call an exceptional responder and since this new chemo works in the brain it is a really good option for me. So this treatment is taken intravenously every 3 weeks and I will remain on it long term. For this reason I am heading in to have a port-a-cath on Monday so they can have better access. I was really nervous about this but while in for gamma knife I met a sweet lady with melanoma from Saskatchewan who showed me her port and talked about her experience with it. Very reassuring for me.

So the day after my first treatment which went really well I started getting a headache which progressively got worse. We headed in to the emergency department after speaking to them at cancer care. The on call oncologist there was so knowledgeable about both my disease and the new drug I had been started on. Made things go so much smoother as she had contacted neurosurgery and let them know to expect me. Not going to say I didn't have to wait what felt like forever about 3 hours but they did get me in for a brain MRI so that was good. It did show a lot of swelling in there and it looked like quite a bit of growth in the tumour. The doctor explained that this could also be a response to the chemo. Sometimes it can look like it's progression but it's actually the drug doing it's job in there so that's what we went along with.  They started me on a high dose of steroids to be gradually decreased over the next few weeks.

A week later I went in for gamma knife and had this tumour treated and also one area on the right side that had shown up on the planning MRI they do beforehand. The treatment itself lasted just under an hour and I was home in the afternoon. It's actually kind of nice they have you there bright and early before 6 am so you can get back home. I was the first one through this time so that was nice. Things went well although I did miss my usual nurse and doctor.  They have both been there for my last 5 gamma knife surgeries.  The great staff in there makes the experience so much more comfortable. I am so thankful for them. So after getting home I was focusing on taking care of myself and getting lots of rest. I had a lot of swelling this time around my eye from the hardware that they put on you so for over a week I was walking around looking like I had badly lost a fistfight.

My youngest son had a hockey tournament in Brandon so we went for the weekend along with my parents and Jeffs parents came down too. I also got to sneak in a great visit with a forever friend. Gotta love those!  ❤️  And Jeff's Aunt came to a game. It was a really nice weekend!  I had noticed some symptoms while we were there and I was as coming off the steroids but I was so fixated on getting off of them so that I could have my next treatment that was scheduled I probably waited a bit too long before going in.

The day after getting back home the headaches, pressure and blurry vision got a lot worse so we went back into emerg. We had a very interesting night (to put it mildly) in emerg. Who knew Monday nights in Winnipeg were so crazy??  So I had a CT scan this time which showed quite a bit of swelling around the areas which had been gamma knifed. This isn't an unusual thing to happen after gamma since it can irritate things. I was reluctant to go back on the steroids because this would mean my treatment being postponed but the swelling needed to be taken down so they started me back on.  Sometimes the plan has to change and you have to go with the flow. I'm learning this but it's not always easy. My health care team has been absolutely amazing!  So grateful for them and so reassured to know that they have my back. My doctor has been involved in everything even over the weekend emerg visit. He's been advocating for me along with my nurse so that's pretty fantastic.

Now we focus on getting this swelling under control and get me ready for the next treatment as soon as we can. My boys are all taking such good care of me and we are continuing on with life as normal as we can. I feel like I'm holding on to them all so much tighter these days as things feel a little more unsteady. I just want to cuddle them all up in my arms and protect them. Life feels so very precious right now especially as we feel the Christmas season upon us. Next week will be 7 years since this really began for us and I couldn't be more proud of our boys for the way they have dealt with this. Especially having an irritable mother at the moment who can't sleep on steroids.... not easy.  I'm thinking I made a mistake when I cut out my red wine 🍷 intake because of the new treatment. It is anti-inflammatory right?  I wonder if I'm the only one that's ever googled this??  Jeff has been such a strong support of strength for all of us. I feel extremely lucky every day for my life and everyone I have around me. It's amazing to me that during tough times there is such an openness and vulnerability that comes in and can make you feel so alive, feel deeper. We celebrated my amazing dad's birthday the other night and to feel true happiness in the middle of this crazy time is very welcome.
I hope you all enjoy the holidays and are able to slow down and enjoy time with your loved ones. That is what it's all about...
xoxo Natalie