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

2 comments:

  1. I had an MRI two years ago, and I was scared prior to the procedure. When I arrived the day of the MRI, the medical staff was professional and kind. They eased my nerves, and helped me to stay calm. The MRI ended up being a breeze! My results were good, and I was so relieved.

    ReplyDelete
    Replies
    1. So happy to hear that it ended up being a good experience for you, Kacey. The staff make all the difference. Cheers to good results!

      Delete