Monday, September 28, 2015

Week 60 - pacman treatment #8 of 8

Well. That's done! Another item off my bucket list, check!  I am safely tucked into my hotel room all quiet and dark with my blankie and cuppa tea, my bloodstream coursing with a fresh $30 000 worth of immunotherapy drug.  I made it.  My last treatment of ipilimumab in this 68-week clinical trial.  Four treatments three weeks apart, and then four treatments three months apart; week 1 was in August 2014. 

I hesitate to congratulate myself, or even to be graceful about accepting the congrats of others, especially today.  

It is with mixed emotion that I put one foot in front of the other and made it through the day.  Over the course of the last 60 weeks I "almost bailed" on this treatment several times (4 372 times to be exact), even up until yesterday when I had to wrench myself into the drivers seat of my car and force myself to go through with this.

It may be difficult for some to understand why I would say this, and if you are new to my blog I can point you to some past articles which may help explain my point of view on the matter.  (The Pacman Effect, Chemo Brain, Back into the waiting pool, Alternative Treatments, Re-Calculating...)

For some unknown reason, somewhere deep inside, even after all of this, the surgeries, the treatments, the scars, the pain, anger, fear, the grief and the loss... I still think they got the wrong guy.  
They made a mistake.  
It can't be me.  

I have always had trouble with commitment, and I may be known to rebel against authority on the odd occasion, I'm a free spirit tree-hugger, and a stubborn one I'm told.  So wrap that all up in one package and label it with a life-sentence of MELANOMA and I'm a permanently cranky fusspot ready to throw a hissyfit at any moment.  And I sure as hell don't want to be pumped full of drugs to add to my general confusion and malaise.

I just want to cocoon, to be alone, to take off for some new place where I don't have to talk or think about it.  I can just float along a merry little river, leaving all of this behind me.  Hang out in the sun, paint coconuts on a beach somewhere, or serve cappuccino to tourists in my Tuscan Trattoria.

But then I wake up.  Hhhmm.. it IS me they're talking about.  And I have to step up to the plate and take what is offered to me.  If I ever want to make it to my Tuscan Trattoria then I'd better get my sorry ass in the chemo chair and do as I'm told.  

Part of the complication of having the choice of which method to use to fight cancer in my particular situation, is the option to not do it.  I hear my Oncologist in one ear, saying I don't necessarily HAVE to have all eight treatments, that four is the standard of care for stage IV patients, so may be fine for my stage IIIB.

And then I hear my family and friends and family physician encouraging me to stick with it, how can there be harm in having more of the treatment?  They must have planned this clinical trial with eight treatments for a reason?? Best case scenario is it holds off recurrence that much longer (as opposed to having stopped at the fourth treatment, last Thanksgiving, thereby having the possibility of being back on the hot list by now).  

The statistics from this trial are still rolling in, and I consider myself fortunate to have received this drug and now that I have completed the trial I am part of the research they are doing in order to help melanoma patients.  
I guess I will concede and congratulate myself on that part of this accomplishment.   

Otherwise... I had good discussions today with my oncologist and the research associate in charge of my schedule.  They gave me some details I have been worrying about, and gave me an idea of what my care plan looks like in the near future.  

They said the numbers are similar for non-recurrence and recurrence with ipilimumab and interferon.  Good stories and bad, still weighing out the results to better predict what I commonly refer to as CHANCE.

I was also able to confirm that it is indeed the drug company that has paid for my expensive treatments in this trial.  This little detail has caused me much anxiety: I hate the thought of four possibly unnecessary drug treatments being paid for by Health Canada. Some of my friends have called me weird for this admission, but whatever LOL  That's me, and that's what was bugging me.  

Going forward I have eight weeks left in the trial, at least three months of fresh side-effects, with the possibility of more after that, the new year will bring the first quarter since last August where I won't have had ipilimumab.  

CT scans tomorrow, then every three months still for another year.  I will continue to be monitored at Sunnybrook (Odette Cancer Centre) and I will be sure to report the information I receive from this trial study when it is done.  I am one of the last MEC3 participants to trickle in, as I slid in under the timeline wire last year when I qualified and rushed my paperwork through to get into this trial in the first place.  

Just because I had my last treatment today does not mean this is over.
Unfortunately, it doesn't work that way.  It is the end of this particular drug treatment, but what lies ahead is still very much uncertain.  I do know what to expect symptom-wise for the next few months, and I may even throw a pacman party when I'm feeling better, but who knows?  I can't commit.  I will just continue with this one day at a time stuff until it gets easier, whenever that may be.  

Happy week 60 of 68.  And thank you yet again to my family and friends for your love and support.  The flood of messages you sent yesterday got me to Toronto, literally.  And the texts, emails, messages, and facebook love today got me through my 90-minute IV infusion.  Thank you ever so much.  xoxo

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