Wednesday, March 5, 2014

I'm back!!!!

Wow!  I can't believe I havn't blogged since before Christmas!!  If you are reading this - a big thank you for hanging in there with me!  Life has been very busy around here!  So I'll get right to it as I'm sure many of you reading this are wondering what's been happening.  Well, the day came in February when we found out that the chemotherapy I was on was no longer doing it's job.  Some new spots had popped up on my brain scan so a change in treatment was recommended by my oncologist.  We were told this day would come but were hoping it would be much later.  It was almost one year from the day I started on it which is twice as long as what most people get.  That's pretty good!  During this year they have come up with another drug which I am now on.  Goes to show how important time is when it comes to researching cancer treatments!

I've been taking the new drug Dabrafinib now for almost a month and after the initial side effects I am feeling pretty good.  It took my body just over a week to get used to things and the really good news is that so far I've been able to tolerate the full dose, unlike the last time when I wound up neutropenic in emerg and had to have my dose lowered.  The side effects are very similar to the other one with ongoing fever being the most common along with nausea, vomiting, diarrhea, joint pain and the list goes on.  I have not experienced any fever as of yet so fingers crossed.  The symptoms that I was experiencing on the other one have actually gotten better and some have even gone away entirely.  So I am actually feeling a lot better than I was on the Vemi.

We met with my neurosurgeon and decided to hold off doing gamma knife again for now.  These new spots are very small and don't seem to be causing any harm.  Hopefully this new drug will take care of them since it has been shown to cross into the blood brain barrier better than the Vemi which is always the issue with brain mets.  Most chemotherapy does not get into the brain because of this protective barrier.  There is a bit of a difference of opinion between my doctors explaining how these brain tumours spread and where they are coming from but nonetheless they are there and we need to stay on top of them.  An interesting thing we learned from the neurosurgeon is that the tumours I have had treated previously are now undetectable on scans.  This is uncommon with melanoma.  Usually the tumours shrink after being treated with gamma but still remain visible and this is concerning because it may be likely for them to reactivate and start growing again.  My body seems to respond to gamma knife very well and that shouldn't change.  The other good news was that the only visible tumours (besides in the brain) on my scan are in my liver and this appeared to no longer be vascular which means it's inactive.  Yayyyyy!!  I can handle that!

I'm feeling much better on this new drug and it is less toxic so we're keeping our fingers crossed that it is working really well.  I will have scans done in a couple of months to check things out.  Also, the drug company has released it to me on a compassionate use basis which is a huge relief since it comes with a price tag of almost $8000.00 per month and is not yet covered by Manitoba Health.  Yikes!!!!  My doctor was also very excited about a new treatment becoming available to us in the next few months which he thinks may be our next step.  Imagine - a year ago I would have only been offered palliative care.  Now don't get me wrong.  I know that for whatever reason I have responded remarkably well - "better than any of us could have hoped for" quoting my doctor during my visit last week.  But I don't want to sugar coat the reality of metastatic melanoma.  I have lost two very dear friends to this disease in December/January.  We are on the verge of coming out with new life extending treatments but is it happening quickly enough?  One of my friends was having to travel to Toronto for treatment.  When you are not well that makes things very rough.  This new treatment is coming to Manitoba only because my doctor is very vocal and involved.  Don't get me started on postage stamp medical care......  As Canadians I believe that we should all have access to the same drugs and treatments but unfortunately this is not always the case.  I have been struggling a lot lately with questions as to why them and not me.  Why have I responded so well? It is something that I think most cancer survivors struggle with when their friends pass on.  It is very devastating and difficult to understand.  Having lunches and coffee chats with these two amazing people who wanted to live, who had loved ones who needed them, who would have done anything for more time.  It's impossible to understand why they were taken from this world.

So now if we weren't in the cancer world enough, we have been thrown in even more so now.  My dad has been diagnosed with prostate cancer and after waiting for several months is going in for surgery tomorrow.  The waiting has been the most difficult part once again, especially after being told how aggressive it appears to be.  So to have this surgery done and to find out hopefully that things havn't spread and this is the only treatment he will need will be a real relief tomorrow.  All I can say is Cancer Sucks!  Jeff's grandma just went through her diagnosis and treatment of breast cancer having had a mastectomy which she did remarkable with and recovered amazingly well and quickly.  It seems that every time we turn around someone else is going through this.  My kids are getting real life lessons which I wish they didn't have to learn at such a young age but boy will they know how to deal with this stuff as they get older.  My youngest son, on the way home from visiting grandma in the hospital said to me, "We know more people who have survived cancer than people who die from it don't we?"  and he started listing all the people in our family who had both lived with and died from cancer.  This is so true and actually made me feel better about things but it's the ones who have died that stand out because of the intense feelings of grief.  It's hard to forget this when the threat is always there staring you in the face.

My main goal lately has been to stay in the present.  Enjoy what's going on around me right now.  Hockey has been a nice distraction lately.  We've been spending lots of time at the rink cheering the boys on. I've had much more energy lately so have been really getting into my workouts at the gym and focusing on good nutritious food.  Jeff, my parents and sisters have been doing the same so there's been some really fun family workout sessions at the gym.  My sisters have been really getting into eating clean too so it's been nice trading recipes and seeing the family putting their health first.  It is so important and something that tends to get neglected in everyone's busy lives.  I am reading a book called The Healing Journey right now and am really taking away a lot of insight from it.  I also start the yoga study which I signed up for next week.  Do you think yoga could have an impact on quality of life for someone with chronic cancer?  My bets are on yes!  Should be fun!

I am definitely glad that I am getting back into this blogging thing since it is definitely therapeutic and a release for me.  Thanks for listening!!!

Randy, I will never forget our chats especially every time I have a Tim's tea.
Gail, you lived everyday with such zest and vibrancy until your very last.  Sending you a hug and a margarita!

1 comment:

  1. Natalie: What a great and informative post. I've been studying cancer blogs lately to see what patients on the journey have been learning about the disease, which I think is important since the traditional medical community is so wrapped up into what it's doing that I feel like they've stopped questioning their assumptions about cancer. My mother beat breast cancer some years ago, but it left me with nagging questions about why a cure still eludes us, and why metastatic cancers seem to get less attention in the research than others. It's good to see you being very upbeat on your journey, which can be a source of hope and inspiration for others. Keep up the great blog! -- Sherman Morrison