Monday, February 28, 2011

Living in the Shadows

After a terrible bout with the stomach flu, my body did eventually recover and came back stronger than before. 2 days after receiving fluids at the hospital, I found my energy and strength returned, my mind was clear, and I felt ready to reenter society.

Every time I reemerge I have to mentally prepare myself for a unique set of challenges. What people may not understand is that Chemotherapy intentionally destroys your immune system- day by day, moment by moment, cell by cell, in order to rebuild it into a healthy one that will hopefully sustain me for a long a beautiful life.

Before Cancer, my immune system, served as my armor to protect me from disease and infection.  Now it is inherently broken- leaving me feeling naked, vulnerable, exposed.

The armor that I have to protect myself now comes from a magic shot called nuelasta which takes accesses my bone marrow in order to replenish my cells. This shot is what helps to rebuild my immune system after I have nadered ( or dropped) which occurs around day ten.
While Neulasta is without a doubt an incredible weapon, my real armor is created and built in my mind. 

Since the stomach flu I have talked to a number of other Hodgkins and Non-Hodgkins survivors  about the precautionary measures they took in order to help prevent infection. The level of precautions taken varied significantly from  person to person.  Most that I spoke to quit work, stopped exercising, and decided to hole up in their childhood homes until they were out of hell.

This approach may be the best for certain people, but for me, I know this type of existence would permanently damage my soul.

I cannot become a recluse, where my existence lies between the hospital and the home. I am not being told to stay at home by my doctors, but when my levels are low I have to take serious precautions. When my levels are ok, the owness is on me to decide what I am comfortable exposing myself to and what precautionary measures I want to integrate. 

Every time I leave the house I enter a war zone.  On some days my body can potentially handle the confrontation with other diseases, and on other days it can't.

How do I avoid and protect myself from diseases I can't actually see?

I have decided that during this time where my health is my number one priority I have to accept that I am going to live in the shadows.  There will be moments where I step out into the sunshine, bask in it and then return into the darkness- but that is ok, and it makes those moments in the sun all the more sweet.

I have integrated a number of suggestions that my doctors and fellow survivors have impressed upon me.

1.  I wear a mask in public places when my levels are low.
2. I always wear a mask at concerts, movie theaters, and other large public spaces.
3.  I always wear a mask and gloves in cabs, and I don't use public transportation.
4.  I opt for the early bird special at restaurants so I can avoid crowds.
5.  I run like hell if I hear someone coughing.
6.  I wash my hands all the time- really all the time. 
7.  I avoid small children that have not had their shots.
8.  I don't eat at salad bars or share food.
9.  Every time I leave the house I have to think hard if the benefit outweighs the cost.

So this is my life if a bubble. I realize it is a temporary bubble, and it is a bubble that very well may become too claustrophobic or too large at times, requiring me to make serious adjustments. 

At the end of the day, I need to protect myself and participate in life, in a way that I feel comfortable.   For the first time in my life, I am driving the bus and calling the shots, and I realize that this role can be hard for those closest to me.  

For those closest to me, I realize it is painful to see me in a mask and gloves. I realize it is hard to see me bald and malnourished. I also know that is is hard to watch me live in the shadows when in my life before cancer, I was dancing in the sunlight.

This existence is temporary. I am investing in my health right now, so I can protect myself, fight with the power that lies within me, and live a long life that will be profoundly changed but greatly enhanced because of this experience.

Until then- here's to seeing you all in the darkness or in the sunlight.

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