Over the past 2 months, the question “How ya doin?’ ” has required much more thought and explanation than it used to and the answer itself changes everyday. I have wanted to shift the focus from my own well being to stress to others how hard this has been for those very close to me. I think about how Alix is juggling all of this, and how our nearly four year old boy has been affected by this craziness. But, the usual answer to the question has typically been a resounding “good!”
Blood counts were always at good levels. I never got very sick, or had to disrupt treatment. Overall, I have done exceptionally well throughout chemotherapy and radiation (both of which ended recently).
The past week has been a different story.
Radiation scar tissue and side affects, along with overall fatigue from the intense chemotherapy have gotten me down a bit. Things I have taken for granted such as sipping ice cold water are now more painful than I could have imagined. I cruised along up to this point in an almost arrogant manner thinking this treatment would not get to me. Sadly, it now has. The doctors say I have what amounts to 2nd degree burns in my esophagus and into my stomach. As you can imagine, it is nearly impossible to eat or drink anything.
I attended a crawfish boil when the symptoms first started and I stared at a warm piece of corn right out of the boil. When cooked properly, this is my favorite part of the boil. The jewel of the batch. I love the play of the sweet corn with the spice of the seasoning and the banknote of the shellfish flavor. It can sometimes be overcooked and mushy, but I could tell this one was cooked to perfection. I reached for it and took a bite, shooting the crawfish saturated juices across the table knowing I was rolling the dice. It hurt. It hurt in a way I cannot describe. I wish I could say it was worth it, but I do not think there is a food out there that would have been.
Some people would probably read this and think I am ridiculous but those that know me well know food is what I live for. It is what I think about all day and every day. The thoughts of this being the way I would have to live my life are very frightening to me. Foods that are acidic, heavily seasoned, and intensely flavored are the worst right now. They are out of the question. As a chef, these are the foods we love to eat and love to cook. For the first time in all of this, I feel defeated. I tried a sip of a beautiful IPA a friend had been saving for me for quite a while and said I would give it a shot. Well that ” shot” of beer went down about as badly as the Reingold we bought for 7.99 a case back at the Blue Horizon on Spring Break circa 2002.
Doctors say that the only treatment is not to treat it. Like a sunburn, I must let my body heal. So for the next 4-6 weeks, that is what I will do. I will try to rest and heal. Life does not stop, however. Cate and Carr are now in camp, getting older, and wanting to jump on their daddy. Restaurant menus need to be changed, tweaked, and pushed to make sure guests do not get bored. Dinner needs to be cooked and new dishes need to be inspired. This will be the hardest part for me yet.
During this time, we hope to travel to MDAnderson for a second opinion and perhaps see if there is additional treatment we can do pre-surgery. Surgery is tentatively set for late June or early July. It will most likely be a esophagectomy and or gastrectomy, where they would remove the esophagus, tumor, and infected lymph nodes. The hope is that the body would have no more cancer and we would proceed with recovery, which would take at best 2 months. We have a great surgical team and will know a little bit more about the next phase of this treatment in about a week.
Until then, we are living one day at a time, counting down to when I can eat that proverbial piece of corn. Grateful that I can still answer to those who ask, “Yeah, I’m doin’ okay.”
2 thoughts on “Half Way Mark”
ouch. glad you’re halfway there, but i can’t even imagine how bad it hurts to eat and drink. your words give an idea, but i’m sure it’s way worse. on a more selfish note, as someone who has to eat bland foods as well, i *(mainly e) would love it if you shared some bland food recipes! prayers to you and your family.
You probably do not remember meeting me. I worked with your mom when she was at Ochsner. She told me about this website when I asked her how you were doing. I was thrilled to read that you had hit the halfway mark, but after reading the rest, was so sad for you. The good news is that you are half way there and prior to this set back, you had done well. My mom struggled with this same disease and went through this challenging time in exactly the same way. The good news is that the surgery was easy after having endured this portion of the treatment and side effects. So, please hold that thought as you go through these next few weeks. Know that there are people praying for you that you don’t even know about and prayers can and will carry you through. God Bless Lisa Colletti