For some reason my last post, posted before I was done and it was in rough draft format so I apologize if it didn’t make sense! But let’s start from the beginning of the day.
My appointment with the gastroenterologist was for 9am at Princess Margaret Hospital. This is a center that specializes in cancer. It is right next to Mount Sinai which is fantastic and really convenient because that is where all my other specialist appointments take place (genetic councellor, dietitian, fertility). My mom came by my house at 6:30am and we drove off to catch the train into Toronto. Just before we got onto the highway, we saw the traffic backing up and decided to do a quick detour and go the opposite direction and take some back roads to the train station. Good move for us because later I found out the highway was closed due to a tractor trailer roll over and a fuel spill. It snarled up most of the morning commute. We would have missed our appointment if we didn’t take the detour. But, we arrived at the train station right on time to buy our tickets and jump on the train. Lucky event #1.
Once we arrived in Toronto we had to take the subway to get to the hospital. At this time we were right in the heart of the morning rush. There were masses of people going here and there. We shuffled through the crowds to the subway and got on. We were going to meet Brandon at the hospital (he worked during the morning and had time in the middle of the day to come to my appointments before going back to work). We thought he was going to just make the appointment on time. When we got off the subway, we happened to run into Brandon, who had also just arrived at the hospital. He happened to spot us in the crowd. He made it with ample time. Lucky event #2.
I just want to add an aside that today was the first day I actually felt nervous about what was going on. I woke up at 4am and couldn’t get back to sleep. I laid in bed doing my usual strategies to fall asleep (deep breathing, counting sheep, and visioning a seed in the ground waiting for it to grow – which usually works because it is soo boring). Eventually it was 5am and I decided it was acceptable to get up. Lucky for me, the Olympic Women’s Halfpipe Qualfiers were streaming live on TV so I had something to entertain myself before my mom came to get me. Lucky event #3. I think I was so nervous because I knew today was the end of the line for appointments. Today would be the day we would set the big date!
After signing in at the check in desk at the GI clinic at Princess Margaret, I waited with my posse (mom, and Brandon) and watched the Olympics on the T.V until we were called in. We were greeted with the gastroenterologist who let us know we would be meeting with her Fellow before speaking with her. That was great because we were able to ask all our questions about the surgery and recovery and not feel pressured for time. The Fellow asked if we had anything big coming up in our lives and I mentioned that we had a trip to Japan planned but that I was also willing to cancel it if there was urgency for the surgery.
When all our questions were answered the Fellow left the room to the gastroenterologist up to speed and both came back into the room. Oh and they also brought a medical resident. So it was like a big party in a small room. We CDH1 mutation people must make interesting cases!
I asked the gastroenterologist about the differences between doing it in Hamilton vs. Toronto and after discussion we all agreed it was better in Toronto for a few reasons. The clinical team is more specalised in working with people with CDH1 mutations. The pathologist has more training in examining my stomach after it has been removed. My data can help out with future research with CDH1 mutation. Just to name a few.
Now onto timing, the gastroenterologist assured me that I would be okay to go to Japan from a medical perspective but if it’s too hard to handle psychologically, I could have the surgery sooner. All the stomachs that she has removed prophylactically have had no more than T1a stage cancer with no lymph node involvement. Nobody has needed chemo or radiation. Some had early cancer on biopsy and others did not. She also said we could do a CT scan on my abdomen and pelvis as another screen to ensure that there isn’t anything worse in my stomach that we don’t know about. After some discussion, she decided to see what she could line up and left the room with all her posse. After about 10 minutes the Fellow returned with a requisition for a CT scan. She told us to go to Mount Sinai to get one done and then come back and we can discuss further. Mom and I were both floored at the speed I could get a CT scan and also get back to talk to her. Yet again, another reason why CDH1 gives you the fast lane card. I have patients that wait 3 months or more just to get a CT scan on their bodies. Lucky event #4.
Brandon, mom and I walked over to Mount Sinai to the imaging department. At this point, I had to cancel my dietitian appointment because there was no way I was going to make it. I was brought into the CT scan waiting area and told to drink 1 litre of water over the next hour because they were going to inject dye through my veins via IV so they could be viewed during the CT scan. Oh yay, another IV!
So I sat in the waiting room, drinking my giant glass of water, and watched the Women’s Halfpipe Semi-finals on the T.V. Yay for Olympic entertainment! Brandon and Mom waited in the main waiting area. After 1 hour, I was called into the CT scan room and gowned up. Now the fun part begins.
I warned the technician that she would likely have a hard time getting the IV in. Again, I had to explain why I was there. People are always shocked to hear why you are there getting these procedures. I guess it is shocking, but I’ve come to terms with it. I’ve gotten my schpeel down to an oscar length speech now.
Poke, Poke, Poke….lots of apologies from the tech. Miss vien, try again, miss again. Try again…bingo! Huzzah! A big bruise likely awaits. If I have one tomorrow, I’ll post a picture. The IV wasn’t even the worst part. Then, I had to get IV dye into my system, along with meds to make it so my stomach wouldn’t spasm during the procedure. That was a cake walk. Next the horrible, horrible, gas pills.
I wouldn’t even call them pills. It’s like trying to take a shot glass full of sour cinnamon and then if that wasn’t bad enough, it explodes into fizz as soon as you put water on it to swallow it down. But wait, that’s not all. You get to do it twice!! Oh and did I mention, you aren’t allowed to burp.
After the gas pills, the CT scan started. I was lying on a bed with my arms overhead and I went in and out of the machine. The whole scan took less than 5 minutes which was great because I really wasn’t comfortable. Once it was done, I sat up and had the best belch ever.
Then it was back to Mount Sinai. We met back up with the gastroenterologist. Now the part that you are all waiting for. When is the surgery?!?!?!? Drum roll please…..
May 14th, 2014
The CT scan was normal. She assured us that time isn’t a huge issue and that May 14th is good. She said she may also be able to move it up if someone cancels after we get back from Japan (April 12).
So that’s my day in a nutshell. Not really a long story short but I know there were a bunch of people who wanted to know all the details. I am happy I can go to Japan. I am relieved that this cancer wasn’t a huge issue to the gastroenterologist in Toronto. I’m glad I can finish my snowboarding season. I feel good that there is a surgical date set.
Oh and just to top the day off. Mom and I made it off the subway, ran to the train and made it in just as the doors were closing. Lucky event #5!
Next appointment will be fertility – Feb 26th.
P.S. I also got my giant bowl of ramen after all my appointments were completed today. Sorry, Steve, I should have taken a picture!!
P.P.S. If you want to follow my blog, you can get email notifications if you sign up on the right hand side of the page. I have had a few friends mention to me they were unaware of this so I thought I’d just put it out there.