I flew to New Jersey recently to meet with renowned sarcoma specialist Dr. Pecora for a second opinion. We took off from Pearson flying though rain, lightening and heavy winds that pushed and pulled the plane around as we ascended above the clouds. The turbulence was appropriate as it reflected how I was feeling on the inside, my emotions swinging from optimism to fear and everything in between. We landed safely an hour and half later, took a car to our hotel and went to sleep with the cautious optimism that I finally settled on as I thought more about what answers or lack there of tomorrow would bring. The next mornings weather was again another reflection of my own emotions as the sun peeked through the clouds between short downpours of rain. My anxiety flew as wildly as a leaf in a tornado and it took some very conscious breathing to steady myself as the appointment drew closer. My stomach was killing me and I couldn’t tell whether it was from the anxiety or the pills I’m taking now, either way, I wasn’t able to eat my lunch before the appointment so, by the time we got there, I was starving and emotional to the point where I was in tears while thanking the nurse that was taking my blood for being so gentle. We were accompanied through the clinic from one room to another where we signed papers and answered the same questions over and over again. “What’s your full name and date of birth, are you a smoker, do you drink, do you have any history of medical conditions, are you allergic to anything,”? Every person we saw wanted to know the answers to these questions and as I rambled through the answers all I could think was when do I get to ask my own questions? Can you help me, how long do I have left to live? My list of questions isn’t as long and when we did finally see the doctor, he still wasn’t able to answer any of them for me. He was really stoic and honest about the situation, he told us that while he has had success in the past with treating intimal sarcoma. He wanted to remind me that there are 143 different types of sarcoma each with their own sub categories and there are only about a 1000 cases a year in the United States. It’s incredible rarity means that many doctors don’t have any experience treating it. But doctor Pecora in particular has had success in finding the right treatment plan by doing genomic sequencing using a sample of the tumour. So they’re going to get a sample sent to them from Mount Sinai and run the tests which take about two weeks and then they’ll call me and let me know if there’s anything they can do or not. So it’s not the worst news in the world but its also not the best news. Try as I might to get a read on the doctor, his poker face was strong and I really couldn’t tell if he was optimistic or not about the case, so I think I just need to stay in this state of cautious optimism for now and see what happens with the results of the testing. We’ll have the sample sent as soon as possible and in the meantime I’ll distract myself with the things and people I love. I’ll continue to cherish each moment, cry when I’m sad and laugh when I’m happy, dance with Riley and Rachel, look for shooting stars in the night sky so I can make my wish that Riley and the new baby grow up healthy and happy.
So there is a sliver of hope now. There’s tangible hope that the testing comes back and they find that there are a combination of medications they can use to stunt the growth of the tumours or potentially do surgery to remove the main mass. “I live my life with hope, always hope that the future will be better than the present”-Drizzt. I don’t know if its the sliver of hope or the little bit of peach fuzz growing on my head but today, for the time in so many months, I looked at myself in the mirror and was happy with what I saw looking back at me. Going through chemo and having your body go through this metamorphosis is jarring and it takes so much away from your sense of self. Everyone around you tells you you’re still the same person to them but it doesn’t change the fact that you don’t feel like yourself despite all the things you do to try and maintain a level of normalcy. When you dont recognize the person in the mirror, it takes a toll on you mentally so I’m so happy that even this little bit of regrowth on my face and head has given me the opportunity to see myself and in turn feel like myself again after so long. It makes me want to jump around, dance with Riley, kiss Rachel and snuggle with Mowgli. I will cherish this feeling as I’ve been cherishing everything, because I don’t know how long it will last. Our flight home was smooth and quiet.
Now, I look forward with a sliver of hope.