Thursday, 1 February 2018

Despite the circumstances

Time evaporated during the frigid days of the holidays - thanks to dominoes and cards with Jack and Davis.  It was exactly how we like it - uneventful, restful and chill.  Lots of laughs, good food and good rest.

Since the new year, I've had 2 treatments (they are IV every three weeks) and things continue to be stable on the disease front and improving on the issues front.  2 scans I had during the holidays which were focused on the "non-brain/spine" areas of the body were clear.  A small lung issue showed up but we're just going to monitor it at this point.  I saw Dr. Nixon early January to review these scans and she was happy with our success against the key symptoms related to vision and balance.  The plan forward is to continue the infusions of antibodies until the benefits are no longer better than the risks.

To clarify on the infusions - as many of you have asked, and it can be confusing.  Basically, the "chemo" I started doing in August was initially 3 drugs - 1 "chemo" drug and 2 "antibodies".  The objective of all 3 is to reduce or reduce or limit the advancement of the disease.  The chemo drug does that more broadly - blowing apart cancer cells but of course damaging healthy cells while doing so.  Hence it is more toxic to the body,  Antibodies are more focused as they target a certain type of cell that exists due to the type of breast cancer tumour (primary or metastatic) has.  In my case, the tumour was HER-2 positive, so the two antibodies look for those cells to "attach" themselves to and block the reproduction of disease cells.  The antibodies don't kick the healthy white cells like the chemo one does, so positively impacts some side effects - i.e. my mouth doesn't get all infected and make eating difficult.  We did 3 rounds of "chemo" with all 3 drugs infused, and then dropped the 1 chemo drug after that. So, since November, my IV infusions have only been the antibodies and therefore some of the side effects I had earlier have subsided.  On the downside, the antibodies are hard on the heart, which had already taken several beatings over the years of treatments, so I had an Echo test earlier this month just to keep an eye on that as well.  It's all a market of risks - choose one instead of another - but right now it seems like the choices are striking a pretty good balance.

What is remarkable is that in early January, Dr. Nixon indicated I didn't need to see her (pending any changes of course) until March 7.  MARCH - 9 weeks from the day I saw her.  It was surreal to insert a calendar entry for so far away.  Back in August, I wasn't sure if I'd make Christmas, let alone MARCH.  It doesn't change the story ending, but it is sure nice to have a few weeks with just the infusions and minor appointments.  I am still rather exhausted most days, but I've been able to enjoy more visits with friends and family and even go to a few movies (prep for the Oscars).  Wheelchair seating or sometimes using just my cane (!). I just had my oldest friend (friendship age not hers) fly in from Vancouver for a night and it was such a refreshing shade of normal for 40 hours.  February is looking full of more visits like those, and more time with family and friends, as well as hopefully progress on my 2121 project.  Normal life stuff.  Miraculous and marvellous.

Later this month I'll get another MRI of my spine and head (last one was in November) and then March 7 we'll see where things are at.  I've still got my "guys" working on my spine (a visualization I started back in August when we knew there was no treatment for the spine) so you never know.  Regardless of what the scan shows I'll continue enjoying what I can for as long as I can. My doctors agree that symptoms rule the action - even if the pictures aren't pretty, what really matters is what symptoms/function I have or don't have.  I recall my doctors telling me years ago after ICU and the pulmonary embolism that my lungs "look like someone took a crow bar to them" but because my pulmonary functions tests were almost normal, I didn't need to use puffers or medication.  It's kind of like life.  Life circumstances can seem pretty horrific but if you can create and sustain happiness regardless, what does it matter?

I realize this post has been a bit technical and medical but I know a lot of you have asked such questions.  How are you doing? just isn't easy to give a simple answer to.  Overall, I'm feeling better than I have felt in the past months. Thanks for your continued support, prayers, love, energy or whatever you prefer to call it. 💙


Wednesday, 20 December 2017

Award presentation video

Just got this from my talented and generous uncle Allan Pinvidic so wanted to share....great for those who missed the event!