Time to go to work on those tumors again

It has taken me a really long time to write this blog…it’s been on my mind but I've been so hesitant to put words to paper.  Why? 

Part of it is my family may read my blog, and I always like to tell them difficult news only once I have it sorted out in my head, or at least partially sorted out.  I try not to make it too messy for them.  As in...”here is what’s happening inside my body and here is what we are going to do about it”...have a plan. 

Part of it was a huge disappointment I had with God.  And who wants to write about that! 

And I guess part of it is this is a chapter I just didn't want to happen and writing about it is so permanent and real. 

But I committed to sharing my story in an open and honest way, as I truly believe that is how I may help someone else.  No one is alone in their journey; somewhere we are sharing the same experiences.   

The reality is that I have technically I have not been without tumors for a long time…but I have been able to ignore them.  July 2012 I underwent surgery to remove them, hoping for a tumor free status but a CT scan 3 months later revealed that we missed one, it was too small to detect at the time we operated.  We watched it grow, slowly, very slowly and February 2013 treated it with radiation.  That worked well for that tumor but, but by summer we knew from the scans that more were appearing.  I am fortunate that they grow slow.  We watch and wait.  It may actually be a medical term; what are you doing about those tumors?  We are using the Wait and Watch technique.   But in March 2014 though my oncologist Dr. Kavan in Montreal is saying we need to act on these.  Dr. Engel at KGH says surgery is very, very risky and difficult, so we go the chemotherapy route.  Dr. Kavan in Montreal and Dr. Gregg in Kingston both agree on the same treatment plan, and co-operate in my care plan –oh glorious that we have come so far in this sharing of my care.  The chemo we are going to try is called Trabectedin.  It’s also called Yondelis.  Essentially it works by sticking to the DNA in cells and damaging it, something about a low groove becoming a high groove.  This stops the cancer from growing and multiplying.  I can receive the chemo in Kingston, also good news.

Trabectedin has in interesting story, it was found in the 50’s and 60’s that an extract from a Caribbean sea squirt had anticancer activity. Further development had to wait many years but in 1984 KL Reinhart went scuba diving off the reefs in West Indies to collect the sea squirts he needed to study further.  Today the drug is derived from a synthetic process and was first dosed to humans in 1996. It’s available to me through a compassionate care grant, which is good as it costs about $7000 per treatment and it's not covered by OHIP.

The treatment plan is all worked out, our day to day plan is worked out. I go for a treatment every 3 weeks and am in the hospital 2 nights per treatment. After a treatment  I need a couple of quiet days to rest, then I am up and running full tilt again :)  We have figured out how to handle work at JB Print, how to handle my animal chores, get Tanner on the bus each morning, how to get to treatment, etc.  So many things to be grateful for and so very little in the way of hardships to cope with.
It’s going to be easy -peasy. 

And here is the truth…I didn’t feel very easy-peasy.  I didn’t want to feel positive and grateful. I wanted to feel mad and sad.  I tried giving myself time; time to process, time to adjust.  I didn’t like what the tumors were doing.  I didn’t like committing to treatment, the schedule and side effects.  We kept talking about how well we were going to handle all the details but inside I was saying “I’m not okay with this”.  What do you do then?  I don’t have any amazing words of wisdom here for you. 

What happened was quite unplanned and by accident on my part.  One evening I got home first, then Paula and Derek (daughter and son-in-law) came home.  Paula is pregnant (she is super sweet so I blame what I say next on pregnancy hormones) and early in our conversation something got said that resulted in a snippy remark from her.  I started to choke up and left the room.  This beautiful girl followed me.  She sat beside me as I cried, cried hard.  I don’t cry often, even in private it’s hard for me to let emotions out like that.  Then I talked.  I told her I just wanted to feel sad, angry and frustrated about it sometimes, to not be all positive and organized all the time.  It makes me feel like what is happening is no big deal and it is a big deal to me.  She listened.  Then we went downstairs and I told Derek the shorter version of it.  He listened.  Oh, how awesome they were to just listen, to not try and fix or correct me.  I felt free, validated and understood…such a relief.  I didn’t need the world to know, just someone.  Then Derek asked if he could pray for me and there was more magic because in hearing his words to God I heard what I was having trouble believing in myself.  Derek spoke of my example to others, my faith, my efforts to use my journey to help others and most importantly how God was giving me role to play in a great plan.  He reaffirmed me in the most truthful of ways – in prayer, cause I know he would not lie to God. 

One night I crawled into Mike’s arms, the safest of all places in my world, and I said “I’m a little bit scared” and he said “I know, me too”.  That was enough for me.  The rest I know.

That’s the truth of it all; being told my disease continues was hard this time.  It was not a new turn of events; it’s the same story of a chronic disease and has been for mine for years and years.  My life is so full of blessings right now; it’s really, really a beautiful life.  It’s all good.  I think I just needed time to get it all out.

There has been more happen, more lessons, more making sense of it all, more realizations and great outcomes.  I think I will post this first, and then tell more in the next blog.  This seems like a good place to sign out.

Please don’t take my honesty here to mean I feel any less supported, loved and blessed.  My life is tremendous.  My family, my husband, my children, my friends, my workplace – it all is more supportive than I could ever ask for.  Each day I count gifts…there are so many.  I love my life. 

Because I was afraid you might still feel I am in a sad place and to assure you I am not  I created a photo album of “things that make me smile”.   Pics that make me smile album