CHAPTER 5 – #The-‘First’-Opinion

After the final telephone conversation with the surgeon I was asked to come in and meet the #oncologist to go over my results. That was Wednesday February 18, 2015. My appointment was at 12pm. I didn’t go to work that day; I was too much of a nervous wreck. I could not concentrate on anything. Zina met me promptly at 1130am and we sat in the cafeteria of the Amerikan Hastanesi to pass the time. She had an espresso and I had water. I think I was nervous but I’m not sure. I think she also tried to cheer me up and keep me positive, but that was easier said than done. I did not have a clue where my brain was. The #blackouts seemed to become more frequent and it was getting more and more frightening… I would be doing or saying something and then a few seconds later it was as if none of what happened several seconds before, had actually happened. Almost as if my brain had an on and off switch that I could not control. But for real! It would literally turn on and off and I would have no recollection of what happened during those off times. I like to believe that they were only a few seconds, less than 5, so that I didn’t do something that I would later regret. Luckily they only lasted a few seconds.

So it was on Wednesday February 18, 2015 when I received my initial #diagnosis of #Follicular Non-Hodgkin’s Lymphoma. I had heard about lymphoma, as I had been doing some research prior to my diagnosis, but honestly had no idea what it meant or what it could be. While all of this was transpiring, and I mean the events leading up to the diagnosis, I knew it was not good news. My doctor’s tried to hide it but did not do a good job. Everything they said and their tone, as well as my own instinct [which is usually right], told me that there was something seriously wrong. But #Cancer?!? I still can’t even bring myself to say those three words: #I have cancer. It did not even sound right as the words rolled off my tongue. It was almost as if I was making a joke. It still today does not seem real. But perhaps I am still in #denial. On that day I was definitely in denial but also in severe #disbelief. Immediately I turned into action mode. I had to find out everything about lymphoma, my options, more tests, the treatments, where I was going to get treated. I had no time for #emotions.

In lieu of all of this, I did not mention the conversations I had with my mom and my sister as well as friends that didn’t know. I would have regular conversations. Bite my tongue and tell them that everything was fine and business as usual. I hated lying to them but in my own way I felt that I was protecting them. I could not stand for them to start worrying when the #results were not even official yet. Little by little I started telling some of my friends. Nicole was the first and then friends in DC as they were all wondering why I had cancelled my trip. In all of this, I never said a word to my mom or my sister. What about my dad you ask? Well we had been estranged for quite some time so to be honest he was not the first on my list. My sister was going to sit for the bar exam end of February so there was no way that I was going to disrupt that. It was going to be her third time and that exam is hard! As for my mom, she works in a remote village in the middle of nowhere in Ethiopia where it is hotter than hell and she has high blood pressure. I was not going to jeopardize her health.

My thoughts when deciding who and when to tell were this: I didn’t even know the full story. I wanted to know and understand everything, everything which meant the #diagnosis, the #prognosis, the second and third opinions, the course or courses of# treatment and the outcome. I wanted to be the #master of my #disease so that when I told loved ones I would be able to explain it to them and hope that they would not see the worst of it. It worked… somewhat. Of course, family will cry, loved ones are going to be extremely concerned, because ultimately no one knows anything about #cancer really. Not even the doctors. Courses of #treatment are based on what has worked in the past for someone who had the exact same diagnosis. It’s a science but it’s also not. It’s impossible to tailor everyone’s treatment, diagnosis and especially prognosis. I have seen it. Two of my friend’s parents died within a year of each other. Each having had treatment and gone into remission. Both being extremely healthy and active and when that asshole came back, he came back with a vengeance. Within months they were gone. Another friend’s parent on the other hand had stage 4 lymphoma and now he is doing great, 5 years in. I met a woman during treatment that also had stage 4 and then was fine, but when I saw her she was coming in for radiation because she developed a brain tumor. So who knows but as the doctor’s say: lymphoma is the best type of cancer to have. Ironic isn’t it?

I digress, as I will often throughout my story. Things will come to mind that feel pertinent and I will include them, but then I will go on with my story. So here we are Wednesday February 18, 2015. Zina and I are waiting anxiously in the waiting room now. Other patients are being called and the clock ticks on and on. I wonder when it will be my chance. I wonder if he is stalling for a reason. See this doctor took a liking to me. Almost like a father figure. He would give me great big hugs and tell me everything was going to be ok. I really believed him and felt bad when I decided to go with another doctor. But that was my prerogative. So anyhow, almost 45 minutes later he calls us in… I’ll have to copy down Zina’s notes and ask her because I honestly don’t remember how the conversation got started. I just remember hearing Follicular Lymphoma, non-hodgkin. Then he said something about #Stage 1 but it would not be official until I did more #tests. It was also #indolent (slow growing), which was excellent news apparently and that I would just need #radiation. Zina started crying from relief bless her heart. She grabbed my hand and squeezed it tight. That really helped as it sort of woke me up. I was physically there but mentally confused. #Cancer? I heard… ‘more tests.’ What tests? He said a #bone marrow biopsy to make sure that it hadn’t spread to my marrow (i.e. leukemia) and a PET scan. A ‘what’ scan? A what biopsy? And you are doing the biopsy today? In 2 hours? Wait what is a bone marrow biopsy??? I was to find out very soon and not in a good way.

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