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Monday, August 8, 2011

where y'at? what it is.

where y'at? what it is.

Where y'at is a slang greeting in New Orleans. When you meet someone in the street this is what they  ask. Then you reply with the key phrase what it is. If you respond wrong, the initiator will know you are not local. Where y'at is also a New Orleans way of asking how things have been going for a person in general.

Well lets just say "y'all" just asked me where y'at? Here's my response...
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I've been poked, prodded, poisoned, cleared of poisons, rolled into metal cylinders for an MRI, confined to bed for hours for a CAT-SCAN, given multiple units of blood, had bone marrow removed more times than I'd like to remember, ditto spinal fluid. I was also the first patient to contract the Norovirus in the hospital..  Being that most patients on the oncology floor are immunosuppressed, I was isolated from the rest of the patients, surrounded by doctors and nurses in yellow gowns and felt like the big cootie monster. I could handle almost anything that was expected of me but isolate me from people, keep me from socializing and the light fades and the world is eternally grey. The internet and cell phone helped but there's nothing like face to face chats with neighbors.

My ALL diagnosis (acute lymphoblastic leukemia) was made on 11/30/10.  I began chemo therapy immediately at UCSF. I finished my therapy schedule on 7/30/11. I got through it. I stayed strong. A new chapter has opened up in my life. With that comes a multitude of questions about my future, my life span. How much time I have.

These are frightening questions to ask. When I do my internet searches, the results are terrifying. Today when I had to grab some information for this blog post, I ended up on the Web M.D site. Here's some of the terrifying information they offer:

 "adult patients with ALL are at risk of developing central nervous system (CNS) involvement during the course of their disease"

"Appropriate initial treatment...results in a complete remission rate of up to 80%. Median remission duration for the complete responders is approximately 15 months."

"Patients who experience a relapse after remission can be expected to succumb within 1 year, even if a second complete remission is achieved."

Okay enough of that horrible, ugly stuff. The information above was compiled by the National Cancer Institute and was last updated August 2010. There are other treatment alternatives should the ALL return like bone marrow transplants but honestly I don't want to deal with writing about that unless I have to.

So, where do I stand now?

I don't know.

I so want to have the view that my glass is half full rather than half empty. I have been out of the hospital for a week. I feel like I've been trying to stay afloat. I don't want to be driven by negative thoughts. I want to clear the negatives out and focus on what I have in my life now: my husband, my children, my grandchildren, my fabulous friends, my artwork.

Where to start or where to leave off is a mystery. I have work to do. I need to seek out those like me. Survivors.

But first of all, I have to break my fear. Mortal life isn't eternal.I have to return to the idea that each day is as precious as a lifetime. I'm struggling. Yes I'm fearful but I'm determined to keep working to better live with this fear. I'm sad but I still allow myself to laugh. I'm angry - yes, I occasionally say 'WHY ME?" but answer back it just is and we can't control all things in our lives.Finally, I've had days where I can't control any of the feelings and I try and loose myself in artwork or just feel bad. I don't believe in suppressing feelings.Let them out then move on. Feeling is living.

So that's where I'mat.

3 comments:

  1. p.s. some advice from the Daily Buddha:
    Do not look back and grieve over the past, for it is gone; and do not be troubled about the future, for it has not yet come. Live in the present, and make it so beautiful that it will be worth remembering.

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  2. Happy to hear that you TODAY you are well. Today is all we have. Tomorrow is not promised to us. I'm happy to hear an update. I'll keep praying, love and blessings to you!

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  3. Honey...you are so right. TODAY is all we have!!
    big hugs to you,
    Martha

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