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Sunday, September 20, 2009

Not Ready Yet

"Life Recipes" by Alison, writing from Pennsylvania, USA

I believe that we don't truly know how strong we are until we are faced with some of life's greatest challenges. For some, it could be gathering the inner strength to leave an abusive relationship. For others, it could be finding the courage to leave a job to pursue a dream. For me, it is facing the possibility of death and saying, "I am not ready yet."

As I have gotten older, I have developed, as many people living in my area, sinus problems. Infections started in my early 20s, but they were random and years separated them. The symptoms of each one were different; no two were alike. The last one started a year or so ago and it never seemed to go fully go away. Multiple trips to the doctor and antibiotics never seemed to help. Eventually, I gave up and decided that this is how it was going to be. I still had my sense of smell since one nostril was clear. It was the opposite side that was "stuffed up".

Earlier this year, things stared to change. After a few months of putting up with constant nasal dripping among other things, I finally had enough. I made an appointment with an ENT (Ear, Nose and Throat) doctor to get some medication that would finally clear up what I thought was chronic sinusitis once and for all.

After allergy testing, a CAT scan, and some probing done by the doctor, it was determined that I had a polyp inside my left nostril. There was no asking what I wanted to do. I was told that I would be scheduled for surgery within the month. What concerned my doctor was not the fact of the polyp. It was that I only had one on one side, and not one on each side like allergy sufferers normally do. He wanted to know "where it was coming from". The places he suggested scared me, but still I had hope that everything would be all right.

I had the surgery on 12 August and everything seemed to go very well. After the packing was removed a day later I could inhale through both nostrils for the first time in almost two years. Life was good. I followed the doctor's directions so everything seemed to be headed toward being given a clean bill of heath at my follow up visit a week later.

It was the calm before the storm.

I was told I have cancer, and one so rare that when the pathologist tested the biopsy, he tested it more than once to be 100% certain he wasn't misdiagnosing it. It is called olfactory neuroblastoma and has been diagnosed less than a thousand times since the 1920s.

An ironic thing happened that day. When I got a call from the doctor's office to reschedule my appointment to a time later in the day, they also suggested that I take something for pain. I knew what that meant – more probing. I was NOT in the mood for that. I never am, but since I was still sensitive from the surgery I was even less in the mood than normal. I called my mother to ask her if she could drive me to and from the appointment since I shouldn't drive when on prescription pain medication.

I had no idea of the prognosis waiting for me, but something deep down inside me wanted her to go. I half-jokingly said, "I want my mommy to come with me and hold my hand." Although I only took over-the-counter meds, my mother decided to take me in her car. All the way there I "talked" to my guardian angel, begging for a painless appointment.

I felt like a child sitting in the waiting room with my mother. I should be able to go to a doctor's visit by myself; I am 38 years old after all. This was the first time I had been there with her since I started seeing the ENT doctor two months prior. My name was called and we both went into the exam room. The physician's assistant came in and did a little probing, but nowhere near what had been done in the past. Finally, the doctor came in and sat down for a chat. My mother jokingly said something about how she hoped that I didn't need any more surgeries. The doctor replied, "Actually, she will." He then dropped the bomb.

I sat in shock. I was completely blind-sided. I was positive that I would be given a clean bill of health and that I would be scheduling my allergy shots with the receptionist when I was done. It took everything I had to stay breathing because I could feel my throat closing. Thankfully, my mother was there to ask questions, because I probably only heard every fifth word he said. I do remember him saying that I was the second person he has seen in his entire career that had this, so he was referring me to another doctor at the University of Pennsylvania.

As we were standing by the receptionists' desk, I finally broke down crying. The first thing I said to my mother was, "Why do I have to have a weird one?" I knew she couldn't answer this. I wasn't looking for an answer. I just needed to ask. Once we were back in her car, I sat quietly and almost numb. Thoughts were racing through my mind one right after the other. "Am I going to live to see my next birthday? What is my mom thinking? How am I going to tell people? Will the words come out of my mouth? My life has changed forever..." Once they finally slowed down I said to myself, "There HAS to be something good that comes from this."

After meeting the doctor at the University of Pennsylvania a few days later, I can't imagine being in better hands. I felt comfortable with him from the first moment I saw him. He scheduled an MRI, CAT and PET scan for me to get more detailed information and to see if the cancer had spread anywhere else in my body. He also sent my pathology slides to the Pathology department at Penn to verify the diagnosis and to see if they could tell him how aggressive the cells are.

Thankfully, the tumor is small and it has not spread anywhere else. What does that mean for me? I have an 8 hour surgery scheduled on 24 September and he will perform the majority of it. A neurosurgeon will then come in at the end to patch up the membrane around my brain. Once they test the remaining tumor (what was at first thought of as a polyp), he will then tell me the duration and amount of radiation I will need. Chemotherapy is still a possibility, but the impression that I got from the doctor is that it is unlikely.

As much as I don't want to lose my hair, I know I am one of the very lucky ones. My tumor was one that wanted to see the light of day. Had it grown up into my brain and not down into my sinus cavity I would have never known, or it may have been too late. My doctor said that I am a young woman, and although it will be a long haul (although I don't think three to six months is long in the grand scheme of things), there is no reason why I shouldn't live until I am 90. I have a grandmother who is 91. I would like to outlive her.

Now, as I wait for the process to begin, I have to go through the phase of telling people. It's a learning experience. The more you say it, the easier it becomes and you also get better at handling people's reactions. Some are in shock, some look at you with pity or at least "differently", and some chose to ignore it all together. The first words out of the majority of people's mouths are, "You are going to be fine." Oddly, that may be true, but sometimes you don't want to hear that. Sometimes, it feels that they are trivializing a very serious thing. I know they don't mean to do that; they just don't know what else to say and want me to keep my spirits up. I can understand that. I feel in my heart that I will be fine, but no one truly knows, not even the doctor. The area he will be working on is the underside of my brain. He is human. Things happen. Of course I have complete confidence in him, but things happen.

After I told a dear friend of mine about my latest news, he looked at me and said that he now knows that because of my attitude regarding this situation, that I must be an angel. I don't know about that. I like to think that anyone in my situation would do the same thing. It is what it is. There is no use feeling sorry for yourself. You do what needs to be done to fix it.

At times I feel like I am living with a false sense of security, because I do believe that as long as I do what my doctor says, I will be just fine. Radiation won't be pleasant, but if it keeps me on Earth for many more decades, I will, as my maternal grandfather would say, "just do it".

If I had received a much more grave diagnosis, my reaction might be completely different. I don't know, and hope I never find out. But, if that is what is in the "plan" for me, hopefully my grandfather's "just do it" attitude would channel through me then, too.

But I am trying to stay positive. I had a dream last week where my paternal grandfather came for a short "visit" with only one thing to say, "We're not ready for you yet." I immediately woke up and my first thought was, "That's good Pop-pa, because I am not ready to see you either."

I like being on this side of the ground. I told my doctor at my first appointment, "I have a lot to do in my life...A LOT." I will do whatever I need to to stay here.

Editor's note: Everyone at Tarkan Deluxe - and across the globe - is praying for Alison to make a speedy recovery. Get well and come back to us real soon Alison.

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