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

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

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