Sunday, June 24, 2012

Fears of Recurrence

So I can't believe that it's been so long since my last post.  Life has just been busy I guess.  We had a great trip out to Alberta and had a blast.  Drumhellar was amazing and Edmonton was lots of fun!!  It was so nice to get away from everything for a week.  I barely thought about cancer the whole time we were gone.  This was partly due to the fact that shortly before we left we went in to Cancer Care to find out the results of my scans and we were ecstatic to find out that they had all come back clear!  There was no melanoma spread anywhere else so this was obviously was a huge relief.  Whenever I do have a recurrence it's always a worry that it spread to more than just that area.  I had a very thorough work up done and nothing was found so we were really able to relax and enjoy our time away.

I sometimes find it hard to process everything that has happened and honestly finding out about this last brain tumour does not feel real at all.  It was a whirlwind to say the least - finding out about it and then within weeks having it treated.  I took a couple of days off work and then that was it.  Life resumed back to normal almost immediately which was great but I find myself now when I have a quiet moment having to try to push it somewhere back in my mind.  The chance of recurrence seems more likely every time that I hear those words, "We found something on your scan".  I try to just be grateful to have today and that my treatments have worked so far but sometimes I feel that it's just not good enough.  Why should I have to be just thankful to have today when I want so much more?  The fear of recurrence has actually changed into a fear of untreatable cancer.  When I start feeling this way I then feel guilty for it because of all of those that I know have been lost to this disease.  Who am I to not be grateful for even still being here?  It's such a strange wave of emotions to be stranded in.  When we face our fears new ones seem to arise.  It's strange - I've had so many people tell me that their greatest fear was having brain mets until they met me.  My greatest fear was always having a recurrence and now that I've got that under my belt a few times over, my fear has turned into having my cancer spread to my bones.  I have met survivors whose cancer has spread to their bones and their fear is of something else.  We all fear different things and it seems that once we overcome that fear a new one sneaks up behind us.

There have been huge advances made in the last couple of years for melanoma patients but is it good enough.  Recently, a man from Toronto has been in the media with his family basically begging for a chance to go on a drug which is in clinical trials and is showing great promise in the treatment of late stage melanoma.  He is being denied this opportunity - he has metastatic melanoma with brain mets.  Obviously, this struck a nerve for my family and we were all very confused and upset that this is happening.  His oncologist thinks that this drug may help and he is dying so what is there to lose?  Some drugs are given on a compassionate basis but this one is not yet.  Sometimes certain rules make absolutely no sense.  Is this how the clinical trials work?  Hand pick the healthiest of your group of patients, try them on the drug and then quickly close the trial and post your results showing how wonderful your drug works.  How about showing a true portrayal of a drug and its effects on all patients.  Just because a person has advanced disease does not mean that they are not a good candidate for a drug trial.  For example, I could be refused for certain drug trials because of my brain mets even though I am a relatively healthy, young patient.  But people with brain mets don't have a high chance of survival so they wouldn't want to use me in their trial because I may bring down their numbers. 

How ridiculous - maybe I would survive and bring their numbers up and show their drug to be a miracle drug.  So, I hope that whoever has the power; whether it's the drug company or Health Canada will give this man a chance at more life.  Darcy has three young children who would like their Dad to be around longer.  If you havn't seen this story in the media there is a petition that has almost 200, 000 signatures on it requesting compassionate access be given to him.  They have a page on Facebook called Help Save Darcy that you can go to for more information.  Now, on the other hand I do understand how the drug companies need to be careful not to give out these drugs freely, especially when only phase 1 testing has been done on them.  They don't know the exact dose to give or for how long so the need for further testing is definitely there but if someone is going to die anyway what is the harm in letting them try it, especially if they are willing to accept the risks....

We are sure glad that the rain clouds have gone away for the past few days and let the sun come out and shine.  The kids have been swimming lots and spending lots of time outside playing which is great.  I will be taking a day a week off for the summer to slow down and spend some time with the kids and my work is allowing me to work from home once a week so this will be so much better for us.  I am finding the commute and working 5 days a week exhausting right now and want to spend as much time with my kiddos as I can.  I am really craving some quiet time and time to just hang out with my family.  We havn't planned much in the way of summer plans but of course are looking forward to our weekend in Kenora with the Lindsays.  Things seem to get so busy and then before you know it the week is over so I'm going to concentrate on slowing things down and not getting hung up on the formalities of life.  It's time to kick back, relax and enjoy the summer!!!  I hope you all get the chance to do the same!!!

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