The Mother of All Surgeries comes to Vancouver

MOAS Comes to Vancouver

I had the chance to meet with Dr. Yarrow McConnell, an amazing doctor that trained under the one and only Dr. Temple.

Its no secret that I love Dr. Temple. Adore, in fact, and that is shared by my whole family.  His skill and his kindness helped me make it through the surgery and its aftermath. Still, having to go to Alberta for my surgery was  a huge upheaval for me and my entire family, and it was pure luck that my sister had moved to Calgary about a month before my diagnosis so  we could all stay there.

Fact is, 2012 could've easily ruined us financially if we hadn't had that sort of support. Besides the stresses on family, on work and school(*for my son ), there is also the financial considerations. We are blessed with the possibility of going to Alberta and have that surgery and stay in the hospital covered... but my goodness, how much easier would it be if it were available here!

When Dr. McFadden first asked us, back on diagnosis day, how we felt about Calgary I thought my sister had been calling and pestering him. Seriously, that was what came to mind. He quickly explained that no - the surgery was only offered in a few places in Canada, and the best ( and the one that BC had an agreement with ) was offered at the Tom Baker Center under Dr. Mack and Dr. Temple.

Wow. Suddenly  I had to go to another province, to have a fighting chance. And mind you, I would've gone anywhere where I had a chance to beat the cancer... but I had a young son,  modest incomes... even the thought of Calgary seemed incredibly faraway. Thankfully my family pooled together, and we made it happen. It was an incredible feat of love, dedication and luck. But it WAS hard. How much easier might recovery had been if I could've been home... with my things, my food, my bed? (Not that I don't love my parents and sisters, but there's something about being in your OWN bed!)

This is a chance for people to have that. For people that hear 'Calgary' and know they have no way of making that possible, no chance of getting there or looking after themselves later.

I really like Dr. McConnell. She was kind, enthusiastic and determined to keep a program going here. She trained under Dr. T in Calgary for three years, I believe, and the fact that it will be available here makes it so much easier for anyone needing it.

I am hoping to be able to help with awareness locally too, and give back a little to those in the middle of the journey. Here is to 2014!

Huh.

So I got TWO calls from the cancer centre today. I was expecting them to be a cancellation of my liver MRI, since my oncologist didn't seem to think I needed one after all... but that didn't turn out to be the case.

One was to CONFIRM my MRI, and to let me know that yes, on the 5th I need to be there in the morning.
The 2nd was to let me know that Dr. T has asked an associate of his, Dr. Mc, to take me on for consultations.

I had heard about her when I had my check up in the summer; I know she trained extensively with her and they are trying to establish the same type of program that the Calgary center has here in BC. I think its fabulous, and I'm both happy to meet her and to hopefully be part of the program being available to more BC patients. Still, a little part of me is sad that I won't be seeing Dr. T anymore... he really is that amazing.

I also thought that meant that my next follow up would be the 6 month from Dr.T's ( January), but she wants to see me in just over three weeks. Overall I'm feeling a little nervous, but hey... the more information and attention the better.

Finally got to make an appointment with my sister's naturopath for later this month too.  I balked a little at the "Oh we charge $150 for new patients", but at the end of the day I just need someone that can see all the issues, bits missing and things I want to accomplish and help me design a nutrition plan.

Today is my son's 9th birthday.... and I feel so blessed to be here to celebrate it with him. :)

Whew!

Good news... clean MRI!! :D NED! Dr. J doesn't think I need to have the liver MRI based on this one, so that one might be cancelled. He will confer with the radiologist and probably Dr. Temple.

I DO have to get back on calcium and vitamin D, and he has ordered a bone density scan I need to have done as a baseline, as I am at higher risk for osteoporosis. I'm actually also having done hepatitis exams, just to be on the safe side.

So what's up with my liver then?

Well, it would seem there is fatty liver infiltration.  Because I don't have a gallbladder anymore I can't really process fats at all - most is tossed out, other absorbed into places that it shouldn't, like my liver.

This is also compounded by the weight I gained since March or so - rapid weight gain thanks to the thyroid issues is still weight, and done in such a short amount of time that my body is feeling the impact.

So, the solution is weightloss, but also  revised eating habits for me.  While we've come a long way and we've just started our family challenge ( thank you Ula and Val for the tips) I will probably need more strict monitoring and expert advise on how to go about doing that, because of ALL the things that got taken out of my body and all the types of food I can't process anymore ( like probiotics).

Chris' insurance covers a naturopath, so now that I have all the information ( pending the bonemass and hep tests) I will follow up and try and get an appointment with one. Onwards!

And six weeks later...

I had more bloodwork done and went in to see my GP again.

Medication has helped my HBP and my thyroid issues, but my liver enzymes keep going up.  On her advise I contacted my oncologists, and Dr. T suggested a CT scan or an MRI to see what's up with my liver. All advised not jumping to scary conclusions, but they were also concerned.

My 6 month MRI is coming up on October 9th. That's booked, and ready, as is meeting with Dr. J  two weeks after that (* he's away until the end of this month). It took some pushing and explaining, but his office has sent a request to the imaging department, as we need to see what is going on with my liver, which apparently means an MRI focusing on the liver ( no date set yet).

Wee.

I'd chalk it up to feeling nervous about my 6 month MRI if my bloodwork wasn't consistently getting higher. Of course, my paranoia takes over and keeps conjuring up the worst scenarios possible. Don't we all do that? I'm taking it day by day but some days are rougher than others.

This fall  (all of 2 weeks ago) we finally chose to pull our son out of a school that wasn't meeting his needs and homeschool him. He has been thriving and we have both been loving it, but the health issues rearing up have us nervous on that regard too. We choose to go ahead and take this leap of faith because we HAVE to be able to plan to some degree, to anticipate a future and prepare accordingly. It has been immensely  rewarding to see him thriving, even if this particular journey has no map of the road ahead. Isn't that true of life in general?

At least I've never been daunted by the road less traveled.

The Not-So-Fun Aftereffects

 A week after we got back from Alberta I went to see my GP, as I'd been having random vertigo for a few days.  I also wanted to discuss getting on HRT as Dr. T had suggested, so I thought it was better to go to my doctor than to a random clinic.

Honestly, I thought that I was getting an ear infection, having had a really bad one ( with severe and constant vertigo) about fifteen years ago. That said, I thought we'd be in and out in a half hour.

I really should've known better, as life seems to like curveballs.

In the end I didn't get HRT. When I described the vertigo and she checked me over there was nothing wrong with my ears, but my blood pressure was a whooping 162/120 ( or thereabouts).  I left her office with blood pressure medication ( !) and a slew of lab tests I had to get done.

The next morning ( still a little shell-shocked), I went to get them all done. There were flags all over the place. She called me in on Tuesday to discuss the results; my thyroid had jumped 8 times from a test we had done in April, and there were concerns about my kidney and liver functions.

I was pissed. I'll be honest. I was furious after we left that office, because I left with a prescription for thyroid medication and the possibility that there might be issues with my liver or kidneys in the relatively near future. What's the cause? Probably chemotherapy. It isn't rare for the cocktail that I was in to cause any of these issues, and its just my luck that it might cause all of them. I mean, I seem to have gotten just about all other weird side effects.

After the crankiness subsided, I took a deep breath. I know that the surgery and chemo saved my life. Sure, chemotherapy may be the equivalent of leeches to people a hundred years from now, but its the best weapon we have. And I went in, guns blazing, to throw everything but the sink at it.

So, for now I'm in a couple of medications, and in five weeks we will get all the tests redone and see how things are evolving. I am hoping that the medication gets to the root of the problem, and hopefully it gives my body time to recover more from the chemo.

Today is my boy's first day at his first sleepaway camp. I will focus on that instead.

The Anniversary Check up And the Strange Workings of the Universe

We just returned from a week-long drive to Alberta for my 1 year check up with Dr. T.

Anniversaries are scary; every doubt seems to creep up and keep you from sleeping well. I have had amazing care throughout this journey, but my doubts and worries are always put to rest by Dr. T. He is the expert who opened me up and took the cancer away, or as my son so eloquently puts it 'kicked the jelly's butt.'

I wanted to go and see him so that I could take a breath and move on. I don't think that you ever entirely move on from cancer, but for the past year and a half I have been living in the moment and in fear. In hope, partly, but mostly in fear. I hate being afraid; in middle school I took up drama to force me to confront my fear of crowds and public speaking, and since I have tried to face my terrors the same way. 

I wasn't prepared for cancer. Not for the practicalities of treatment, for the friends made ( and lost) along the way, not for the sheer pummeling that body and spirit can take. Mostly, however, I wasn't prepared to lose my ability to project myself into the future and plan what may lay ahead.

Dr. T was amazing. We discussed the MRI ( NED, stellar) he did an exam; he encouraged me to go back onto HRT as that will help me rediscover more normalcy in my life as well. He was delighted to hear that I am back to my old self, even playing soccer with my son; he was sad that I didn't bring him to meet him, but I promised that one day I will.  He asked me if I had written any more books, and thanked me for the copy that I sent him.  This wonderful expert, this amazing human being... how can I describe the love that my family feels for him? It isn't just gratitude, or admiration, but genuine affection.  This was the person who saved my life, and managed to save our family.  I asked a question for a friend whose family member is undergoing this journey and he was quick to point me ( and her ) in the right direction.  How are we so blessed, to have found him in our path? I finally got to meet in person his wonderful assistant D. - what a team! People who genuinely care and try to help feel so rare, this day and age. I hope they continue to inspire everyone that works with them for many, many years to come.

Another joy was in seeing my sisters and parents, all reunited in Calgary to make some better memories this year. Aiden got to play with his cousins, and while poor Chris slept away the week  thanks to a miserable bout with bronchitis we all made wonderful new summer memories of that beautiful place.

My sister Ula and her husband MOVED cities so they could be close to the hospital and support me and my guys. They didn't ask, they did it... they went above and beyond, and showed us the sort of love that I am still in awe of. 
My youngest sister, Val, had an internship in NYC that she passed up ( despite my protests) to be at my side and help me through the aftermath of surgery. She told me that whatever her future held would still be there, but that she needed to be there that summer to help me through the rougher times. And she did. This past Spring she got a different internship in NYC and today released the first single "M&Ms" of her EP Saudade: http://www.thisisfakediy.co.uk/articles/news/listen-tei-shi-streams-debut-single-mms/

 I have to believe that life is coming full circle, and letting us all rebuild. I can see the future now. I can plan, and picture my son graduating highschool, university, getting married. I can see my sisters in their careers and partnerships, happy and fulfilled. Like the fortune cookie I received as a teenager, my future now feels as boundless as the lofty heavens.

The MRIs will continue, every 6 months. I don't know that those quite end. But perhaps between those half year intervals I will disconnect a little and just build new memories every chance I get. I always get the questions and the comments, so if you ever need to reach out, I am happy to answer.

So here's to tomorrow, and all the tomorrows yet to come.

MOAS Anniversary

June 7th was the anniversary of my MOAS, the cytoreductive surgery.
I was dreading it and planning to be a hermit, but fate had other plans for me. First my son volunteers me  as a parent helper at their heritage walk and art workshop that day  (so how could I say no?) and then the day before our upstairs neighbors floods our apartment!

Suffice it to say it wasn't the most relaxing all days all around. It did, however, remind me again to put things in perspective and not sweat the smaller things as much. Aiden and the kids in his class had a fabulous time despite the pouring rain, we are not at fault so the strata and the guy upstairs will have to pay for the damage.

Most importantly? I'm around to deal with life's stresses alongside my guys and realize how lucky we are. <3