Monday, August 19, 2013

"LIMBO" 

  This painting was from Christmas Day last year when I had a Nuetropenic Fever.  This is when all your counts drop dangerously low,  that you can't fight off infection and a high fever occurs.  These were the worst.  When you have cancer you acquire certain cancer accessories, (cancessories?) that must be nearby at all times.  Ex: A thermometer, hand sanitizer, barf bag, pills, weed, etc.   Sometimes after feeling chills and taking my temp. I would actually lie and beg my parents not to call my doctor about having a fever,  because I would absolutely dread being admitted.  I knew that even though I had just spent the last two weeks in bed, sick from chemo,  that I would ultimately be sentenced to at least another week in the hospital.  That is the majority of a month,  sick in bed.  And every month,  the same thing. Alone in a room, where your days and nights are broken up by being stuck by needles and poked and prodded by nurses and doctors asking you annoying questions about everything, including what your poop is like.  lol.  

  I remember having to be rushed to the Er in the middle of the night,  shaking so violently,  from a 104 fever that 4 heated blankets could  barely warm me up.  I remember waking up, soaking in so much sweat,  that I could see the imprint of my body on the sheets.  Sometimes, my heart rate so high, and my blood pressure, scary low, I would get a headache from hearing my heart beat so loud.  It was then, I was convinced the end was near.  Feeling that bad, I sometimes would momentarily accept death because I just wanted a rest from all the physical pain. The worst was the utter loneliness of it all.  I remember how much that Christmas sucked and my whole family stood in the doorway of the hospital room, with masks on.   Watching the nurse take tubes and tubes of blood, as I shook under the blankets.  I'd be so anemic that my blood would pour out like water all over the place.  In those times,  I would realize how alien my body was to me, and how it did what it wanted to.  Much like a broken machine gone haywire.  

 I know that was the first time my sister saw how sick ( she was visiting from Cali) I was and it probably freaked her out a lot.  I wonder what my parents told her.  When one family member has cancer basically the whole family does.  It changes every one's lives.   I am lucky to have such a strong, amazing family.  I have needed them to be my rock, and they have gone beyond that.  I actually had a doctor tell me he had never had a patient with such amazing parents, and I believe it.  I remember being miserable,  and too weak to walk,  and my dad pretending to let go of my wheelchair in the parking lots.  I love my dad for his dad jokes and you really need to keep a sense of humor as much as possible, because this is life no matter how much it didn't go our way, it is still life.  We are all still here!   My dad is an Irish singer so his schedule, being pretty flexible, would take me to chemo everyone morning at like 6 am to mass. gen.  He was so popular with the nurse staff because he is just so rad!  If you've met him, you'd know. I've always been the eldest daughter and it is hard to show how weak I am to my brother and sister.  I guess that's one of things that I hate the most about cancer.  I have met so many amazing people who happen to have cancer and although visually appear physically weak inside are so fucking strong and inspiring.  I hate the idea of a poor little cancer patient as a victim.  Although our bodies are failing our minds are very strong.

 Unfortunately, I got these damned Nuetropenic fevers almost every time I did chemo last year.  During these fevers, I would have to be isolated for about a week and a half.  I often, was so sick,  I felt somewhere between life and death.  Sometimes,  I still feel like that when I am sick or how my whole life revolves around getting "better".  Everything else has been put on hold.  Sometimes,  I think I would rather be in jail.  At least then I would be able to think about getting out.  I used to think it would all be Temporary but its been almost 3 years since my diagnosis and I can't see a light at the end of the tunnel anymore.  I'd be foolish to do so after cancer has repeatedly slapped me in the face every time I get my hopes up about ANYTHING. 

  This past week I was reminded after having to stay inpatient again at Sloan Kettering, at how old it gets spending your days sick in bed at the hospital.  This time I wasn't nuetropenic but after continuous vomiting, a fever, and a sharp pain in my stomach I took a cab to the hospital to get some help.  To my surprise my doctors discovered I had Appendicitis!  I was sent down to get scans and while I sat in the wheel chair waiting, I prayed it really was Appendicitis and not a tumor in my stomach.  Hearing it was Appendicitis was actually a relief! At first I was told that I'd be going straight into surgery which I wasn't that upset about since I've been through so many worse surgeries in the past 2 1/2 years.  

  I'm going to count them for "fun": 

3 biopsies in left foot to find out if it was cancer and what kind.  I was awake for two of these where they removed bone and tissue from MY LEFT FOOT,  I had never been in so much pain as that second one and actually screamed and cried the whole way home.  

3 Port surgeries.  One to have it implanted when i was diagnosed, one to have it removed where i was told to celebrate because i was done with chemo...  One to have it re implanted after I relapsed and had to start chemo again.. Although that one hurt the least, it was the saddest. 

Pelvic lymph node biopsy where I was also awake and had a needle the size of a sewing needle stuck through my hip.  watching on the screen was pretty surreal.

Surgery on the back of left knee and left pelvis, where about 30 lymph nodes were removed.  This was a big like 9 hour surgery.  I basically had to learn to walk again right after and had tubes and bags of blood coming out of my leg for about a month.  no fun and really gross especially when the doctor pulled them out nice and slooowwww.

Surgery to have my ovary moved over!  Yes that's right, before I relapsed my radiologist suggested I move one of them over so it wouldn't get fried during pelvic radiation. 

In the end, I ended up, not having surgery for the Appendicitis and Colitis that I was told I acquired from Irinotecan (chemo drug).  My guts were all inflamed and I was treated with antibiotics and no eating or drinking for about a week.  I was put on a strict diet of just mouth watering ice cubes! mmmm.  After awhile I was allowed to have clear liquids.  Apple juice and broth never tasted so good!

  I am lucky to have had all the visitors that I did.  I had so many!  It made my time go by so much faster.  So if you came to visit me although I might have acted loopy because of the morphine, it meant a lot. I really have the coolest friends.  Also my mom came down again, and I don't know what I would do without her.  She is the most selfless, talented, and genuinely good hearted person I know and has been by my side in Nyc this whole difficult summer 

  I'm glad that all this shit happened before my art show and not during, because although I'm nervous to share such personal pieces , I am so excited to see the paintings (which I finished in the hospital) all together and see old and new friends all in one room.  I think its going to be a bit overwhelming but in a really amazing way.  It feels so good to have something to feel good about after constant sadness! There will be old college friends there and people who I've never even met, but feel like i know so well, because of their consistent encouraging emails and facebook messages.  It is so nice to have set a goal and actually accomplished it.  To feel a sense of control for once! This could very well be the biggest day of my life.  Who knows?  Although I don't look to far ahead anymore, hopefully this is just the beginning of things to come.  




22 comments:

  1. Hey I have a quick question about your blog, could you email me when you have a chance? Thanks! -Cam

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  2. Just discovered your blog and wanted to send you a message of support. I hope you are feeling better at this time.

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