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

Tuesday, September 20, 2016

Back on the Roller Coaster

Soooo......  This summer has not been quite what I had hoped for. I was very happy at my appointment in June to be given the summer off from cancer care but silly me - thinking that I had any control over what cancer does. July was wonderful as we enjoyed our time away from the busy scheduled life during the school year.  We spent a lot of time out on the deck and enjoying the pool.  We drove up to Swan River for Jeff's sister's beautiful wedding and spent some long overdue time visiting with family. So great to reconnect with everyone again!  We celebrated a lot, as this summer was full of milestones for our family. Birthdays, anniversaries, graduations....  lots of parties happening around here!

Meanwhile, at the end of July I went in for my regularly scheduled brain MRI and I received a call a few days later. My neurosurgeon wanted to see me.  My heart dropped.  He never wants to see me so something must be up.  We would need to wait until after the long weekend for his next clinic day with no clue as to what this must mean.  This was difficult to say the least as I usually feel much more in control of what is happening.  My health care providers are usually much more open about what I can expect and this has made it so much easier on all of us.  But not this time, they wouldn't give me any further information.  I called my oncologist's office and my regular nurse was away.  Great just my luck!  The nurse was so very sweet and contacted my doctor right away who was also very concerned about this.  He scheduled an urgent CT scan of my body to see if there had been any changes there.  So we made it through the weekend trying to distract ourselves and not get too worried.  A few bottles glasses of wine helped a lot!

The appointment was both relieving & scary as shit.  The cancer in my brain has progressed.  The largest tumour being over 2 cm which is the second largest tumour I have ever had up there.  The other smudges on the scan were consistent in size & shape with similar ones that I had before which were gamma knifed.   So I would be scheduled for gamma knife ASAP and these would all be treated.  I left there feeling sick to my stomach but also glad that they could treat them.  I had been stable for well over a year so this news really burst my bubble that I had been floating around in.  The following day I was in to see my oncologist and received the results of my body CT scan.  Good news!  Everything is still stable.  A few lymph nodes had increased in size but that could be from anything really so not super concerning right now.  We were all very relieved to hear this news but my doctor was really not impressed with my brain MRI results so was scheduling me to start a new chemotherapy ASAP.  He felt that I was not responding to my current meds enough anymore and it was time for a change.  We were in shock.  This would mean that I would be starting on the next treatment (my last available treatment here in Manitoba at the moment).  The pharmacist came in to discuss side effects, etc - for any of you that have had the new chemo side effects chat - it's not fun.  They tell you all of the horrible things that may or may not happen to you from starting a new drug.  Her voice became more and more muffled as I eventually blocked her out entirely. My mom doesn't even remember her being there which goes to show how unpleasant of an experience it was.  Just block it out and go to your happy place.  So I was being scheduled to have a port-a-cath inserted and would start the new treatment as soon as I had gamma knife.

The next day, my neurosurgeon calls me.  He had taken my case to brain tumour rounds the day before and there was some concern raised about me going in for gamma knife.  Apparently, this tumour had been gamma knifed twice already and they were thinking that it wasn't a good idea to treat it again.  Now, having had brain mets for almost 7 years and already having gamma knife surgery 5 times they aren't sure what the effects would be.  As he put it, we are treading in new waters here and we don't want to cause more of a problem.  My symptoms have been pretty minimal.  I had just started having head aches and nothing major.  They were surprised that I am not having anything strange happening with my left side since the tumour is on the right side of the brain and apparently I could be noticing some funny feelings, which I am not.  So the decision was made to do a more specialized MRI which was called a spectroscopy MRI.  This would show more of what the tissue is made up.  I had this done a few days later and it showed inflammation & necrotic tissue was making the tumour seem larger than what it really is. If you are confused at this point join the club! I figure even my doctors aren't quite sure what to make of things at this point so how should I be able to?  So my two specialists have a phone conversation and decide that we will hold off on starting the new treatment and will do another scan mid October to see what's changed. They don't want to jump in and intervene when I am really not having a lot of symptoms right now.  We don't want to be causing any problems that I don't need.  He did speak to me about possibly needing surgery to go in and clean things up. Not liking the idea of that but we'll see.

So now we wait for the next scan ..... It's been a wild couple of months that's for sure! So up and down and I am just trying to ride the waves without drowning.  It's a good thing that I have complete faith & trust in my doctors and the decisions they make.  Sometimes I tend to get very focused on that and doing a lot of research on my own.  But for now I will focus on taking care of myself and my family and letting things go.  I will focus on the present and right now I'm feeling pretty good so I will stick with that.  The boys are all getting back into the fall routine with back to school, hockey, volleyball, working...  Life goes on and we do the best we can at making it great!

I had an awesome 41st birthday this month!  Jeff took me out for an amazing dinner, we got together with family for cake and then the following weekend I enjoyed a day at the spa and a girls' night out with friends. What a great way to celebrate another year and also to relax & laugh and let some stress go as we lit up the dance floor!  We celebrated Jeff's 40th in August when his family was down visiting but his big day was actually this past weekend.  Now he can't bug me about still being in his 30's.  We're both in our 40's now babe!!  There has definitely been lots to celebrate!

This weekend I will be walking in the Strides for Melanoma walk here in Winnipeg and feel that it is more important than ever.  Being faced with the reality that my treatment options are dwindling is very scary.  There is still a lot of work & research to do!  I often hear people talk about a cure for cancer but it's not that simple.  There won't be one cure for cancer.  Each cancer is so different & unique and not all drugs work for all people so there will never just be one blanket cure all.  There have been many breakthrough medications released in the past few years and I hope & pray that this continues.

This summer I have been reminded that life is messy.  It doesn't always go as planned and we sometimes really struggle.  For me it's about finding balance in living my amazing life and working through all the tough stuff.  I find myself relying on the things that I have learned on retreat and from others to stay afloat; self care, living in the moment,  having faith, trust & gratitude for the things that are good in our lives (and when all else fails a nice glass of wine and some good laughs or sometimes a good cry).  Thank you to all of my family & friends who have been there the last several weeks to keep me going.  Whether I've spoken to you about what's going on or not I know that I have a lot of cheerleaders out there and I so appreciate that.  I am one lucky girl to have such a strong circle of support around me!

xoxo Natalie

Wednesday, June 15, 2016

Reasons to Smile

I'm amazed that it has been almost a year since I've blogged.  A year full of living life!  I really don't know where to start.  It's a strange and wonderful experience to be living in what I like to think of as these bonus years.  Years that cancer has threatened to take away.  So many milestones that I have been here to see and celebrate with my beautiful family.  For this I feel such a deep sense of gratitude I can not even put into words and this gratitude is what keeps me smiling.

Over this last year my scans have been very stable. No evidence of disease in my body and my last brain scan showed no new tumours since my gamma knife treatment last year.  A couple of the existing tumours may have even shrunk a little which is surprising since my treatment hasn't changed. I'm still on the oral medication Dabrafinib (Tafinlar) and it remains to work at keeping things stable.  I've been on the BRAF inhibiting drugs for almost 3 1/2 years now which is well beyond what was initially expected which was 6 months.  In fact, my doctor is feeling so confident about my health status right now I am getting a summer break from going into the clinic.  Yayyyy!!  I will remain on my meds and will see him again after I have my next regular CT scan at the end of August.  I have a brain MRI scheduled in July and will receive the results of that from my brain doc.  My appointments have now become just a quick check in to see how I'm doing.  Of course blood work, but that's just checking to see how my body is handling the treatment and everything has been good there.  It's my scans that will show if my treatment needs to be changed.  So we go on living in these 3 month time frames - very relieved for every time scans are stable and we can breathe easier for another 3 months.  For some reason stepping through those doors at Cancer Care as a patient makes me feel - well I guess - like I am a patient, like I'm a sick person.  Just when I start feeling normal again then it's time for another appointment.  I think about it when I have an upcoming appointment, even if I know that everything is fine.  There is an unsteady feeling about it like at anytime they could tell me that things have changed and my treatment stops working.  It's scary.  So anytime away from there is fine by me. There are two very promising treatments that they are using in my clinic right now besides the one I'm on and I am very excited to hear about what else is new out there at our annual Melanoma Information night this month.  I'm very thankful to know that if the cancer decides to reappear, there are options.  There is hope. 

I had the sweetest encounter the other day at Cancer Care.  I was there for a committee meeting and afterwards decided to go to the resource center and check out a few books.  As I was finishing up, a very fragile looking lady came in wearing a big beautiful sunhat.  Love her for that alone!  She maneuvered her walker through the doorway not taking her eyes off of me for a second with the biggest smile on her face. Then she exclaimed in a voice much louder than I expected "Wow!  Just Wow!!"  I smiled not really sure what all the excitement was about.  Until she said "Your hair! Like Wow!"  I'm sure my face turned beet red as I realized that all eyes were on me.  The kind volunteer lady said "I know right, it's beautiful!"  For those of you that havn't seen me in a while I have grown quite the curly, frizzy, crazy head of hair.  I call it the chemo curl.  Some people lose their hair, others get crazy hair.  The conversation went on to other things and then back to the hair, and then onto other things - and then back to the hair.  She was a very chatty, spunky lady.  She shared some of her cancer story with me and why she was at the clinic.  She then apologized for going on about my hair and then said something to me that has now changed not only the way I see this crazy head of hair but also is a great reminder about the little things in life.  She said "I don't have much to smile about these days but your hair sure makes me smile."  

So we keep on living everyday taking notice of the little things we have around us to smile about.  Even in a world that can feel full of uncertainty, sadness & fear; remembering that there can also be gratitude, happiness & love and making sure that these are the things that take center stage in our lives.  

xoxo Natalie

Friday, July 24, 2015

Glimmers of hope

I'm sitting in the Cancer Care Lab waiting to get my blood work done and I wonder....  has anyone ever broken down in tears in here....  like had a breakdown....  lost their shit.....  I've never really seen anyone with tears streaming down their face.  Cancer Care must do a really good job of fixing everyone up before sending them along their merry way.  Either that or people wait until they get out to their cars until they let all their sadness, anger and frustration go.  Maybe the parking lot is full of all the broken, sobbing patients.  I've just seen my doctor and now I sit in the lab chair and I want to cry, sob actually.  I'm alone for a moment while the technician leaves to enter my info into the computer and in that moment it's starting to sink in and I want to scream.  I am very familiar with all the people in here having been coming monthly for so long.  There's a new face there though and she looks over at me and smiles.  That makes me want to cry even more but I don't.  I get my blood drawn and leave "Have a good day!"

A couple of months earlier I was in for my regular check up and although my body scan had remained clear and stable, my brain scan had showed some activity.  A few new tumours and some growth in others.  I had been in to see the Neurosurgeon and was being scheduled for gamma knife #5.  I had been told that one of the tumours was in the pons again (not a good place to have a tumour) and that one of the other tumours had been bleeding.  (also not good)  This was terrifying news to get.  When I saw the Neurosurgeon and went over the scans with him I found out that this was not true.  Not sure how that mistake was made but was relieved that it was.  I walked away from that appointment on cloud 9, sang all the way home in the car.  Then realized that I still had to go for gamma to have a few tumours treated but happy that it wasn't worse.  It's all about perspective I guess.  On my way home I ran into my family doctor at the liquor store (yes, I felt like a glass of wine after that day) and as he was curious about how things had turned out having heard about the mix up,  so we had a quick conversation in the middle of the LC.  This is now my life..... talking to my GP in a liquor store about brain tumours, bleeding and otherwise.  You have to laugh ....... or have a nervous breakdown.  

So, at my check up I learned that a new drug had just been approved!  The combination therapy that I had tried to get on through a clinical trial a few years ago has just become available.  This combination is the drug that I am currently on now Dabrafinib plus a MEK inhibitor which combined in the clinical trials showed much better response rates.  So I was super happy to get started on this right away.  The drug that I am on now is working really great for me but this could work even better for longer and hopefully would help to control the tumours in the brain plus the side effects are minimal.  Great!  Sign me up!  I started on it a few days later. 

A couple of weeks later and I was in for gamma knife surgery.  Since this was #5 for me I knew what to expect and things went pretty smoothly.  It was really nice to catch up with my wonderful nurses Michelle and Olive.  They make the whole gamma experience so much more comfortable and bearable.  My sisters and I had a hair straightening party the night before so that we could calm down my crazy hair to make it a bit easier when it was time to attach the gamma head frame.  Because of the different drugs I've been on my hair has thinned out at different times and has now grown in as tight corkscrew curls.  The great thing is that it has grown back in!!  After the pre-gamma MRI the surgeons come up with a treatment plan and come and talk to me.  I have 4 tumours that they will treat and my treatment time will be 1 hour.  I am shocked at this since the last few times it was only 20 minutes or so.  This seems like a long time to me to be laying in that machine with my head bolted to table but I guess before I was only getting 1 or 2 tumours treated.  He returns a few minutes later to let us know that there is actually 1 more that they would like to treat so that would bump my time up to 1 hour and 30 minutes.  Yuck!  I pick out a couple of CD's (good thing I brought a few to choose from) and I am the first out of the four of us to go in for my treatment.  My sisters are just arriving to let Jeff take off to get to work.  It has been an early morning having to be at the hospital before 6.  I come out an hour and a half later with a throbbing head ache.  I don't always get the rebound headache afterwards but this time is especially bad.  They wrap my head with gauze and give me some Tylenol and a couple of hours later I am able to head home.  

I usually bounce back from gamma within a day or two but this time not so much.  I hadn't been having any side effects from the new treatment so that was a relief.  It's always difficult and scary to start a new chemo drug like that.  You just don't know how your body will react to it. Then I woke up one morning feeling like my head weighed 100 pounds.  My head was pounding and I felt like I was in a fog.  Before gamma knife I was having episodes of a knocking and throbbing sensation in the right side of my head and lots of dizziness.  I had 2 minor episodes after gamma knife and then it stopped.  But this was completely different.  I was hoping it was just a flu or something but it continued everyday all day.  The fatigue was draining me so that I could barely get through the day.  Something was wrong.  I called my gamma nurse and after talking to my doctor I was scheduled for a head CT scan.  Could it be swelling from gamma which was quite common and could be treated with steroids or something else.  Meanwhile a lump had appeared on my inner thigh.  I couldn't see anything on my skin but could feel this painful lump underneath.  I thought I'd just watch it for a bit and see what happens.  Within a week I had these painful spots which now had turned red and spread to both thighs and arms.  I knew something was going on but I really didn't want to sound alarm bells and have them discontinue my treatment.  I tend to suffer on through things hoping they will clear themselves up so that I can stay on the best treatment available.  I mean chemo isn't supposed to be easy right?  Some people are super sick through their treatments and still carry on.

I got a call from my pharmacist checking in on things to see how I was feeling.  I couldn't lie to her so I mentioned these rash like hives.  She was very understanding and encouraged me to call my nurse and even offered to do it for me since this was a reportable symptom.  These treatments are all so new so I guess they want to keep a really close eye on things because they really don't know all the side effects yet.  After a talk with my nurse we decide that it can wait until Wednesday when I'm scheduled to come in for my appointment.  Wednesday comes and my doctor, my nurse and a resident are all examining my skin which has become even worse over the last few days and I cringe whenever someone touches me.  My doctor says he doesn't think that it appears like melanoma lesions which is what he automatically thought when he heard about these spots.  Now, this didn't even enter my mind!  That my cancer was spreading into lesions all over my arms and legs.  Could that really happen?  No, it doesn't appear to be consistent with melanoma.  It may be Erythema Nodosum, a rash that would be caused from the new drug and causing inflammation in the tissue under the skin.  You need to stop treatment immediately.  No, I don't want to stop the treatment.  I want to be on the best treatment and this is it right now.  Can't I take Benedryl or something?  No, this can be fatal.  What?  How can a rash be fatal?  Our conversation went something like that back and forth.  In the end I get the point and realize that I have to stop it.  If the lesions go away we know they were from the drug.  If they don't I will be scheduled for a biopsy.  I still feel grateful that I can stay on the one drug and just discontinue the new one but I want to be on the best.  He does mention that we can look at restarting it as a half dose next month.  I hang on to this hope and make my way to the lab where I sit up in the chair and try my best to hold back the tears.  I can't explain what it feels like to have your treatment stopped.  It sucks!  I see these treatments as my tools to fix my body... help me fight defend myself against the cancer.  The more treatments you go through the emptier the toolbox gets.  So now I have 2 treatments in my toolbox, the one I'm on now & 1 more that would be very accessible in the future.  There is also 1 coming in the future that may be hopefully an option if I need it.  There is more hope than ever right now in the melanoma world.

My head CT scan comes back looking good and they see no reason for the symptoms that I'm having.  Then, within a week of being off the new drug the headaches subside and the fog I've been living in clears.  I realize just how terrible I've been feeling.  Sometimes you don't realize it until you're feeling normal again.  The skin lesions all turn into bruising which looked terrible but then cleared up on their own.  I did have one of them get infected which was a pain but healed on its own.  Shows me how great my body is still working at healing itself.  Obviously, this new drug was not only causing issues in my arms and legs but was also causing problems in the brain.  That's the last thing I need.  The next few weeks are amazing!  Feeling so much better I am able to have fun with Jeff and the boys.  Jeff worked like a madman trying to finish building our deck so that we would have the summer with the pool up and running.  What an amazing job he did!  It looks fabulous and we have been spending lots of time enjoying it.  It's our little oasis!  Now if the construction happening across the road would give it a rest we could have a peaceful summer!  We are having a super relaxed summer anyway with the boys.  No scheduled activities - just fun and we are loving it!  We had a fabulous time in Vancouver with Callanish when we went for the premier of the documentary I was a part of.  We all had a great time!  The premier was a great success for Callanish and received a lot of positive feedback and they had to schedule more showings.  Goes to show how important the work that they are doing is and how wonderful they all are!  My family doc was in Vancouver for a conference and saw the documentary while he was there.  He was quite surprised when my face popped up on the screen not expecting that I would be in a documentary half way across the country.  And I was shocked that he happened to be at the first conference that it was shown.  Very grateful that my health care team is always out there searching for information and anything that could help them with treating their patients.

I did decide to restart the Trametinib at a half dose at my last appointment to see if I could tolerate it and then slowly build up to the full dose.  I felt that because I started the drug and had gamma knife so close together that it was just too much for my body to take.  Maybe now I would be able to tolerate it better?  But I changed my mind the following day.  I am feeling so great now and want to keep it that way for the rest of the summer.  I think that sometimes I let fear dictate my decisions, especially when it comes to treatment.  Maybe that just isn't the treatment for me.  I went for my first post gamma brain MRI last night so will find out next week what kind of response I am having.  The hope is that it stopped all the tumours from growing anymore and will start shrinking them.  I have responded amazingly well to the drug that I am currently on and although they tell me it's a short term solution, I'm not so sure about that.  There is evidence now showing that there are a small number of people having spectacular responses.  (I love when my doctor says the word Spectacular!  It hasn't been a word that melanoma doctors have gotten to say in the past with it having had such a grim prognosis - until now!)  My doctor doesn't really know what to recommend at this point and says that because I've been on this drug longer than anyone else in Manitoba, he can't say for sure anymore that it will stop working.  Could this miracle drug be a longer term answer for some than originally thought?  I'll go with that.  And so, as long as these glimmers of hope keep shimmering so will I.  

On that note, I hope that you all enjoy this amazing summer!!  Don't forget your hats & shades and cover up!  xo Natalie