Saturday, January 15, 2011

Learning to Embrace Difference

My entire life I have always been hard to label. In some ways I believe who I was in High School is partially representative of who I am today. Granted, I am no longer wearing head to toe J-Crew suits, body piercings or what my friends called Dr. Evil Shirts- but I recognize there are still some similarities.

In High School I never really fit anywhere. I was never cool, but never full on nerdy. I was not a theatre or music star, but I had my moments. I was never a top athlete, but was good enough.  I was never in all honors classes, but I was used to excelling and I loved learning.
I was and am a floater. Hard to categorize, easily malleable, and a friend to many. I easily moved from the scrounge where the alternative kids hung out, to the back two tables in the cafeteria where the athletes and high school hotties ate lunch.  In truth, my favorite place was always with my childhood friends who are still my nearest and dearest.

I floated in and out because I never wanted to be categorized. I loved a lot of things, and wasn't willing to fully commit to being a certain way. Maybe I was unique, different, or one could argue a total weirdo.

When graduation came, I knew I couldn't take the more logical and perhaps more comfortable route. I chose to break free from the U.S. and head to land of French Canadians for some culture and education. Choosing to go to school at Mcgill in Montreal was hands down the best decision I have made in  the past 15 years (thank you Liza Behles for your strong recommendation- I would not have chosen to go there without your guidance!).  My days in Montreal nourished me in a way I never thought was possible. My interests widened, I had friends from all over the world, and I started to realize very quickly that there was a rich and beautiful life outside of the shtetl where I grew up in Chicago. My hunger for learning and traveling grew exponentially, and I have explored many parts of the world as a result.  In college I had friends from traditional Moroccan Jewish backgrounds, to the slums of Toronto. Some were privileged children of diplomats, and others were from broken homes. McGill was perfect for me because there was no real Greek scene but rather a club scene based on one's intersts. I was peripherally involved in many clubs ( from Hillel to social action to the Outdoors Club). I didn't have to be one way or the other in Montreal. This was a city where difference was celebrated, and I flourished as a result.    

Fortunately or unfortunately, my Cancer is also different. She has appropriately modeled herself after me- and frankly I don't like it. They say copying is the ultimate form of flattery- in this case, I wish she would just leave me alone. 

Yesterday I learned that I do not have a definitive diagnosis. I am currently have what they call Intermediate Hodgkins also known as grey-zone Hodgkins. In 2008 they reclassified Hodgkin's into (straight up Hodgkins), Non-Hodgkins, and Intermediate Hodgkins.

Once again I am somewhere in between.

On Friday, my oncologist and 10 other of his colleagues which consist of surgeons, oncologists, pathologists, my fertility navigator and social worker, reviewed my case top to bottom.

This week I had a pulmonary function test, maga exam, chest x-ray, full body CT, and a bone marrow biopsy.  The results from these tests help to paint a bigger picture of what is going on in my body. Thank G-d, my bone marrow biopsy came back negative. I don't have cancer in my bones which would indicate that my Cancer was much more advanced than they originally anticipated. I also according to the CT scan have no cancer below my diaphragm- hallelujah!!!!!!!!!!!

I was excited- notably excited- jumping up and down excited. But- this all changed when I learned the biopsy from my neck is being further and further examined. Every time they do what is called a staining of my cells, they are learning more about the non-Hodgkins that lives inside me.

I spoke with Dr. Gordon's nurse and asked her flat out- "How rare is my disorder?". She answered- "It's rare". I then asked, "Has anyone been treated at Northwestern with this disease?", she replied " No".

Ok- I get it- I know I am different- but in this circumstance- why cant I just be plain vanilla? I don't want to be different, I don't want to be unique- I just want to be average.
I called Dr. Gordon in tears- i felt like I was back at the beginning. How could I not have an official diagnosis? What did this all mean? 

Dr. Gordon has this incredible ability to calm me down. He spoke to me honestly, candidly and in a way that I could understand. 

Here's the deal- there are other people that have had my disease ( my rare and unusual disease) but- they were never classified as such because its a new diagnosis. Because this is a new diagnosis- there is not one preferred type of treatment. If my stains show up as indicating more non-Hodgkin's features, I will be treated with a very different chemo regimen called Epoch and they will add Ritixun. to target my non-Hodgkins presentation. Epoch requires 4 days of hospitalization, a pick line, and treatments once every three weeks. Eventually - if preferred, treatments can be done in the comfort of one's home. I will still require 6 cycles ( or 6 months of treatment).  If my stains come back indicating more Hodgkin's, then we will resume with the anticipated ABVD + Rituxin regimen which is outpatient and occurs every two weeks.

There's more.

For the past few months I have had headaches that have gotten worse. I wake up with them, go to bed with them.  Times when I am headache free are few and far between. Apparently the headaches I am having every day have nothing to do with Cancer. Granted they could be stress or tension headaches but this symptom is not typically presented with Hodgkins' patients. Joy.

I am scheduled for a brain CT on Monday or Tuesday to make sure there isn't anything else going on. 

I was once again on information overload. I should also note that I am incredibly hormonal from the fertility drugs that seem to be working, and have given me a nice little temporary gut to boot. 

For the next few days I have to learn to be o.k with not knowing. I also desperately need to embrace my difference, and learn to trust the process. I can't expect to learn everything about intermediate Hodgkins in 3 days. There is no way for me to anticipate what my scans will yield and what the final verdict will be.  Part of me feels that by letting my doctors do the heavy lifting, I am thereby surrendering. I need to somehow reframe how I feel about this or the process of healing is going to be that much harder.

In the past 29 years, my difference has been a blessing. I hope and pray, that my rare, unique, and newly classifiable Cancer similarly proves to be a gift.  

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