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