Since being diagnosed with cancer (that sounds really weird to say), I have been making some phone calls to see which surgeon can get me in fastest. The gastroenterologist in Hamilton may be able to get me in as early as Feb 24th. My genetic counsellor is from Toronto and is recommending that I consult with that surgeon prior to making the final decision. She has been doing prophylactic gastrectomies for CDH1 carriers for the past 3-4 years and has done over 20 to date.
My original appointment with the gastroenterologist in Toronto was on March 12. At first this seemed reasonable but now with this diagnosis it seems too far away. My genetic counsellor has spoke with the surgeon and they are going to try get me in sooner. At this point I’m waiting for the office to call me back. I hope to have an appointment booked by next week and a surgical date booked by next week as well.
I don’t want to downplay the seriousness of this situation. I have remained as positive as I can about this whole adventure. But I won’t lie, there are times where it’s upsetting to know what has happened. Am I scared? Yes, sometimes I think about the worst outcome (on surgery they find that the cancer is more spread then we had thought, and it has invaded my lymph nodes…at that point I may need chemo and radiation). However, I am someone who believes that you have a choice on how you can feel about things, and I choose to take each piece of news with as much positivity as I can. I could look at this whole journey so far and be upset about everything, but that won’t change the outcome. So you mine as well stay positive!
The chance is low that I will need chemo and radiation, but we can’t be 100% sure until the surgery. When I’m on the table, the gastroenterologist will see if the cancer has invaded my lymph nodes. Brandon worries that the cancer could be more widespread than we had thought because it is not common to find the signet cells on biopsy and it was found. Some people just have only this on the final pathological report once their stomach has been analyzed. Others have had negative biopsies and more advanced cancer. Others just have a few other areas of microscopic cancer. So it’s really all up in the air at this point. There won’t be a true answer what I have until after my stomach is out. Your mind is a wonderful thing, but it can play some pretty mean tricks on you if you let it!
Knowing that I could be having surgery within the next month or so is a crazy thing. I have been thinking about everything I do in my life and how it will change after surgery. For instance, I won’t be able to lift anything heavy for 12 weeks post op. When Brandon and I was at the grocery store last night, I was carrying all our items in a basket. He asked me if he could carry it because it was getting pretty heavy. I didn’t let him though, because I wanted to keep lifting as much as I could while I still can (even if that meant a little struggling at the end of the shop – I didn’t let it show though!!) I also have been maximizing my weekends doing as many active things as I can because that will be something else I’ll have to build back up to doing. I’m going to try get to the ski hill as possible! I’m missing my baseball season so I CAN’T miss all of my snowboarding season!!!
I think the thing I am most worried about after surgery is the weight loss I will experience. Most people lose about 15-20lbs post surgery. I am a healthy 125lbs at this point in time. I am 5’2 with an athletic build. I have a crazy fast metabolism. It’s scary to think that I could drop down to 105lbs. So for the next few weeks I’m going to gain as much weight as I can. I never thought I would ever say that in my life!
Telling my friends has been a difficult thing. Most people are shocked that, ‘oh you have cancer!?!?!’. I do my best to reassure them that it’s very microscopic and contained. It may have been like that for years and it may stay that way. I’m not dying. It has been caught super early. I just have to act on it now because we don’t know the catalyst that will make it spread. Overall, I don’t really like telling people I have cancer because I don’t want them to feel sorry for me. But, I think talking about it helps me accept the realism of the situation.
So the race is on…what ever surgeon can get me in first will be the one who does the surgery. I still want to go to Japan at the end of March, but it’s not looking so good at this point. We will see!!