Elephant in a Bird Cage

I haven't updated in a long time.  Writing to you all has been a cloud that hung over my head for quite some time but I resisted because giving a short "blurb" about my progress seemed so simple and yet it was so hard.  There have been many ups and downs I have faced, since I last wrote seriously.  I can't believe that as of three days ago, I have been diagnosed with adenocarcinoma for ten months. 

Since my last health entry, I've experienced some set backs and some improvements.  By the end of the summer I decided to enroll in a Literary Nonfiction class so that I could get some practice in for creative writing.  I've wanted to go to the New School in the Village for quite some time and it's a very competitive school for specifically nonfiction writing.  Most schools have MFA in writing for Fiction or Poetry but I have been extremely impressed with the non-credit class I am taking in preparation for my application.  They only take 24 students PER YEAR into the nonfiction master's writing program so I was very motivated to learn as much as I could from my professor.  When I started the class, I realized HOW MUCH my brain radiation had affected my thinking.  Much of our class time is spent in discussion and often it would take ages for me to formulate the right words or to comprehend what a piece was saying.  I had never in my life felt learning disabled and I believe this was the first time ever I experienced anything like that.  I felt like I looked like a deer caught in headlights whenever the professor called on me in the beginning of class.  But as time went on I began to feel more comfortable with everyone and I think that people understood that I have cancer and that it was difficult and I worked hard and felt more at ease.  It just made me feel like cancer set me back so much because of the brain radiation and that was a very sad feeling.  Feeling like I lost my precious ability to think; or to say it differently, feeling like I lost my mind!  That has much improved of course--even in the beginning it was hard to say the right words (ie. I would call a pencil a penquill by accident or stutter quite a bit).  It was a llittle uphill battle but I tried my best. 

Another set back was ending up back in the hospital.  This was from pain a cyst that I had in my right ovary that was 5cm long.  I was having pain in my abdomen but I didn't want to go there and waste all these doctor's time and my own time.  I was glad that I finally went of course, but being in the hospital robs me of something each time.  It takes some bit of strength I had out and sometimes I feel like nothing gets put back in it's place.  I think I have been trying to place everything back together, in some sort of mediocre mirage, by myself.  Little by little, I'd start studying for italian again, trying to walk fast/jog once around the track!, tutoring a ten year old girl in math and social studies, babysitting for Caleb Shish--basically I feel like I've been picking up all the pieces of my life that were knocked out when I was diagnosed with cancer.

And then two weeks ago I ended up in the hospital again for extreme pain.  I thought that I was getting so busy, getting my life back, putting the pieces back together that I missed the signs of all the extreme pain I was feeling.  I was getting a lot of pain in my back but I thought I must have pulled a muscle or strained my back or was sore from too much working out.  I realized that I needed to go to the ER one Friday night and good friends brought me right away...after much testing it was found that the cancer is growing, my miracle drug-Tarceva-doesn't seem to be working as effectively anymore, and that I would have to do emergency radiation.

I was shocked.  I think this was more shocking that my first, original diagnosis even though, I cannot tell you exactly why that is.  I have gone through the radiation treatments and am done actually but they brought with them a lot of anxiety and pain.  I have been through so much pain this past couple of weeks that it's been unbearable.  I have seriously maxed out on the pain medications as far as narcotics go.  Basically, the worst side effects have been this extreme pain, lack of appetite (I mean I could go for days without eating), no bowel movements (please pray for this! it's actually VERY serious), a severe anxiety  and a lot of drowsiness.  All of these have been very frustrating side effects because they all seem to work against one another as well. 

It has been difficult to connect to God, to pray.  I need more than ever, especially during the night hours, to know that God is with me.  I ask God to reveal Himself as Immanuel "God with me" in what is the VERY darkest part of my life. 

Currently Reading Quicksand and Passing (American Women Writers Series) By Nella Larsen see related

Things I Learned While On STINT...

Salve amici!  A year ago this Sunday, I arrived home from living abroad in Roma.  I do not think that I have ever learned so much about myself, what I am capable of and how much I need to change in such a short period of time.  Here is a list of things I compiled. 

Have I said lately that I miss my teammates to such varying degrees at any given moment--they have a special place in my heart.  Rome STINT holler. ;)

• I have a New York accent. [shocker!]
• I can cook.
• I am more like my mother than I ever could have dreamed.
• Ministry is an extremely relational career path.  It can even drain a definite extrovert like me.
• My way is not always the right, best, correct way.
• I love New York.
• But there are other great places in the world. [It's true!  Gasp...]
• I feel like I never knew what grace and forgiveness and humility was before.
• An American should never make a chocolate torte.  Nobody should.  Ever.
• Having the bigger house, better job and faster car isn't important.
• Learning in a step by step, little by little process. 
• Real, creative, genuine people make me happy.
• I can control how I spend my money/Buying things don't have to thrill me.
• There is no such thing as a perfect STINTer.
• It's not everyone else's fault.
• It's not always my fault.
• It is so scary to move to another country--but so worth it.
• I enjoy sleep.
• Despite tragedy, it is possible to dream again.
• I am not better because I am from New York City.
• A happy medium is sometimes so hard to attain.
• Jesus can change someone's life.
• It's okay to do something someone else's way-even if I (falsely) think my way is better.
• I am a creative person.
• Grace is an amazing, active, beautiful, live-changing thing.
• My house doesn't always have to be perfect.
• There is beauty in little things in life...
• Sciopero happens.
• I do appreciate the beauty of nature. [This city girl never thought about the green outdoors.]
• I really do hate living out my flaws and mistakes surrounded so closely by people.
• Everyone possesses the power to bring positive things into the world.
• Making a "good impression" on other's isn't always the best way.
• Be yourself, even when it hurts.
• I *can* be okay with being a work in progress.
• I am not perfect.
• My value is not in productivity.
• It's impossible to have a clean bathroom with six girls.
• I don't have to complain about things I don't like about myself--just make steps to change them.
• I am completely wrapped up in comfortability--temperature, location, and weather conditions mean far too much and have too much weight to determine my enjoyment.
• Oh, I thought you were Puerto Rican or something?
• I am SO fallible.
• Everything in my life is not for my enjoyment.  That is not the goal.
• Two years ago I had no idea what flexibility was.
• Don't be fooled-there are such things as STINT googles.
• Italian washing machines do not get things clean.
  
• And most importantly, I learned who John Deere is. :)

Currently Listening To The 5 Boroughs By Beastie Boys see related

Four months, three days

[I've been working on this post for about a month, so much time has passed in the interim.**]

Four months, three days ago my life changed drastically.  I look at that time and I feel like eons have passed in the interim.  I feel stretched to my uttermost and yet, I've decided to "rage against the dying of the light."  I believe for a miracle but prepare myself also for the fact that I am terminally ill.  When I was first diagnosed in February, the doctor told my mother that I didn't have much time to live, probably about two months.  My primary physician told my mother that the doctors acted as if they had buried me already because every staff person was crying when they were done working with me and the hospital didn't give me much hope as far as treatment because I was too far gone.  Imagine if I stumbled on my pulmonogist (Dr. Mann) or my cardiothoracic surgeon (Dr. Lajam) crying-which did happen when they visited me daily.  Knowing that it feels good to look back and realize that I have had those two months and added three.  Now being at Memorial Sloan Kettering I've been given a year to a couple of years which is so odd to me.  I don't think I'm dying soon, I know I have a lot of time but this poison in my body still exists and it's hard to recognize that and to accept it.  I suppose I am saying all this because I don't always feel like I have cancer.  And when I do feel like I have cancer, I don't look like I expect cancer patients to look.  But when I see at how diminished my capacity is from what it once was, I realize that in small ways this disease is trying to rob me of my life.  Thank goodness something in me does say "no!"...I want to live my life full of Grace and Beauty regardless.  Not that every moment will be perfect but that I can still become the person I was meant to be.

I've noticed a greater sense of emotionalism these past couple weeks.  If you can imagine what it feels like to be perpetually standing on an abyss, waiting for the inevitable to come, even though it won't come for quite some time, and regardless there you are hanging at the edge of a precipice-that's what I daily feel like.  That feeling is getting better but it started because two weeks ago we got in a car accident.  I thought to myself when it happened, "What more can we take?" and literally felt like evil surrounded me.  My mother's car had already been totaled two days after my diagnosis and four months later a guy ran a stop sign and we collided.  I was devastated by this even though the damages were minor.  I felt like danger and emergencies were lurking at every corner.  I became very sensitive of my family and dreamed of horrible things happening to them.  Finally, my mother got the courage up to drive again and I clutch the door because I am afraid that one driver will make an irresponsible mistake and it will be over.  I know that's normal.  But I feared people/myself falling down stairs, looking out the window and falling out, air conditioners falling on someone, walking down the sidewalk and falling into a hole even though I could easily die of that than of cancer.  We just don't know.  I don't mean to morbid, I'm just processing out loud these fears that have come closer to be realities.  I used to be able to be confident in my ability to take care of my widowed mother and handicapped brother when I was older and it feels dibilitating to know that that might not be so. 

A month ago I was in the hospital for a week and something about that experience took a lot of my inner ability to fight which I am regaining back.  I have also learned that I have cancer in my thyroid and spine.  I just want to get it out.  I pray to God that He would have mercy on me and heal me.  I ask that you would pray that too.

Also to my dismay, I've learned that I probably am not be able to have kids.  That came as a huge shock to me because although I thought that it was probably going to happen (as a result of the chemotherapy), the disappointment still stung.  I felt sad that I didn't know enough information to maybe harvest eggs, but regardless of the excessive costs they would never replant them into a cancer patient who hasn't been in remission for at least five years.  I guess that this doesn't directly affect NOW me because I'm not married but one thing I look forward to so much is having a baby-that looks like me and my husband.  And I know that everything was going so fast when I was diagnosed, I'm sure my doctors didn't think about it and being that my cancer is for 60-70 year olds, I'm sure they don't have to talk about fertility ever.  If it is the case that I am infertile I rest in knowing that I did always want to adopt kids from around the world and maybe that is exactly why I have had that desire.  It will be disappointing news to me (as it is now dealing with that thought) but at least a bit more bearable.

I have 100% decided that I will not go back to teaching this fall.  I thought that I would but I am quickly realizing that I don't have the same chuzpah that makes me an effective educator.  I don't have the energy to deal with in house suspension kids with severe behavior disorders.  Maybe in a future time in my life.  I am grateful for my teaching job this year because this was the first year that GHI (the insurance the Board of Education uses) accepted Memorial Sloan Kettering in their approved hospitals.  I am also grateful that my Italian principal (do you think maybe that's why I got hired?) hired me for one of the last four positions New York City had for English. I met so many substitutes who wanted my job, my exact position in fact, and I got it.  Even when I feel my most despondent or in pain, I know deep in my heart that God orchestrated that for me because it fits together too seamlessly, and I am grateful. 

Right now, I am looking for a part-time online job or call at home customer service job.  In my free time I am working on educating myself and preparing for graduate school in the future.  I know that the radiation has affected my memory and speech so I am working on vocabulary, reading New York Times articles, reviewing Italian words and practicing the piano to reverse the damage done by the diminishing of my brain cells.  And slowly, I'm improving.  At first the words or notes would swim in front of my eyes but I am becoming more accustomed to it now.

I'm still holding on folks.

Please pray for:

• Courage in the face of fear.
• My upcoming catscan.  My first scan showed some improvement but my second one was the same.  I am really hoping to see some changes in this scan.
• Broken ribs.  They really prevent me from doing things that I would normally do like exercise or drive my car and the pain has becoming difficult to deal with as well. 
• The upcoming fertility exam.  After running tests they will be able to tell me if I am capable of having children.
• Leg and stomach pain.  This past week I have started having trouble walking because of it.
• SLEEP.
• And still last but not least, continued, improved health!  Healing from cancer...
  
  

Currently Listening Luca Dirisio By Luca Dirisio Calma e Sanguefreddo see related