when i look to the sky

it has been a while since i have written. i have been helping out an organization called Smile Forever. i actually created the website for them, which is a first time but i taught myself. i have been so lucky to find something to do while i am not able to work.
i have some mild chronic gvhd right now and mostly is affecting my eyes with dry eyes, so i am on a regimen of taking 4 eye drops a day in each eye and then a steroid eye drop at night. a bit of mild skin gvhd, but my doctor tells me that having a little bit of gvhd is a good thing. gvhd means graft versus host disesase.
but if you'd like to check out the website, it is http://www.smile-forever.org
i finally brought my bike to get a tune up becuase i want to start riding again, and i am really excited about this.
my new apartment is more quiet and i am enjoying the suburbs. my friend told me that someone asked how i was doing and she responded, "she is going through menopause and has moved to the suburbs!" I don't know about that response but it is true. i have been declared in menopause which hit me more abruptly and made me sad for a few days more than i thought it would. but luckily, i did not have many of the effects or if i did they were interlinked with my chemo so i just assumed it was the chemotherapy effects.
i have been going to a lot of doctors appointments. i had a minor surgery to remove a mole on my back. so for a few weeks, i had to go there once a week. then i had to deal with eye doctors and my own transplant doctors.
i have joined some leukemia/lymphoma message boards and was told by my doctor to wait until a year. I told her that was next month and she said another year. i have followed some people that have gone down a really horrible path. i realize how lucky i am.
but i believe i am so lucky because i have had the love and support of so many people. i believe having my mom be with me everyday and supporting me the way she did helped me survive this. i believe the support, the phone calls, the letters, the outpouring of love kept me going. OF course the people closest to me and my little baby niece who is now 5, taylor.
i feel as i have watched her grow i have had my own growth and i feel differently and have learned the acceptance of many things.
i have become involved with this organization because I realize how hard it is to get financial aid and how difficult it still is for me sometimes to feel secure financially. Also the pain in a parent's eyes as they are left to struggle with the emotions of watching a child go through this and then also have to worry about how to financially handle it. it is disgusting and sad.
i have been through quite a few hospital settings and the amazing hospitals i have been through, the social workers are over-worked and can't give the proper attention to the financial aid and the emotional aid to a patient. They should be two different people. I do not want the person who I discuss my emotions and feelings with talking to me about my finances. I separated myself from having a therapist at my hospital last November. I met my therapist through a group therapy that I was in.
Yesterday when I had therapy I felt so much calmer, different than I had felt in months. Now it may be the ativan but I feel that my mind is settling and also has a way to talk about different things.
I am only one year out of transplant and still scared. On April 3rd, I have a series of tests and also I get my one year immunizations.
I hope things continue on the path I am on.
I know it can be hard to understand this war that happens as a stem cell transplant patient. The war,the understanding that other transplant patients have or the people that sat in my room and watched me go through vomiting every meal and the headaches, etc. But as hard as it is, I have been so lucky to have people who have been by my side and i have loved greatly.
I have been busy but I plan to write a book that I have started because it is needed.
And my family and friends, I still need you immensely.
I love you,
Jenn

happy birthday rebecca 03/14/07

June 14, 2004 was a surreal day for me as my mother called me to let
me know rebecca had passed away. She told me she took her own life. I
went hysterical and i could not stop crying. But I was really hard to
have a grasp and there are times still when I feel that rebecca
understands what I go through more than most. Reba, as Jenna would
call her, lit up my life and so many others. Her smile was contagious
and nothing she did was ever questioned.
As my own road has gone down this path of cancer and transplant, I
occasionally talk to Rebecca especially while driving and blasting
music on a summer/spring day when the sunroof is open and there are
no barriers. That is the way rebecca let us all feel, free.
But unfortunately, illness can make you become a prisoner.
Today was the first day I went to visit Rebecca alone since her
funeral in June. That day, as we drove into the cemetery gates, I
broke down in an hysterical cry and I felt like I had to put myself
together and a part of me felt ashamed that I could have been more of
a friend to Rebecca. The what ifs and the how comes circulate the
mind but there is a peacefulness. I wanted to do something weird and
different. I didn't want to follow this jewish traditional gathering.
I wanted to crawl into the box, the coffin and hug her one more time
and not be there with family members, my sister, her best friend,
reading eulogies. I wanted to laugh with her and say 'fuck this shit'.

When I relapsed I found myself terrified when the doctors told me I
would have to be on lots of steroids. Immediately, my mind went to
Rebecca. The future may or may not lead me into needing steroids but
I have been a very very lucky person who has not needed steroids
through my post transplant so far. The massive doses, i mean, 160-200
mg a day. That is a lot. And I have believed the reason for this is
because Rebecca watches over me and has helped protect me. I believe
Rebecca and I had a friendship that was special and I finally have
come to realize that it was time to stop being regretful for what I
have not done but for what I can do.

So today was Rebecca's birthday. And I remember one night, she came
over to my friend's chris' house and was smoking cigarettes upset
because people had forgotten her birthday. I remember her birthday
and her deathday every year. I sometimes thought maybe there was some
3 month correlation between them and then did not know if she knew
she ended her life on flag day. So today, I went to a beautiful
florist and I told him, I needed something funky and not bland. I was
going to a cemetary, but these flowers needed to feel like they were
having a party because it was my sister's best friend's birthday and
a close friend to me. He put every flower in a water holder with
spikes because I told him I hated those cemetery holders. So off I
went to therapy and then to Long Island to see Rebecca. It took
forever, the traffic sucked. I listened to music and through about
seeing Rebecca now. I was scared and I did this alone and I felt free
about this.

I finally arrived at the cemetery at about 3:15pm. I wanted to bring
my camera but I forgot. I walked over and I saw that tree, a tree
that I remembered seeing Rebecca's mom standing near and I was
watching her hysterical. And I felt so uncomfortable in my funeral
attire that day. I felt so much more comfortable there today. Jeans
that I was going to lean beside her gravesite. And Alison told me to
put pebbles or rocks on it so I did for every person. So I forgot
where it was and left info in the car and finally found it. Rebecca
Michele Eisen and I felt like I had not seen my friend in a really
long time. There were some stones, 3 on the grave. I kneeled down
next to the grave and I started crying. My pants were getting muddied
and I had also taken some pebbles from trees near the parking lot, a
pocketful. I put them down and I said this was for me, my sister,
alyson, taylor, my mom, my dad, my brother, alison, jenna, chris and
our friends. I opened up the flowers and just set them up all around
it with colors. And I sat there on the cellophane from the flowers
and I started crying and crying and crying. I had a bottle of water
and I poured some on the "love never dies" and near her and I took a
drink. I thought we could have a drink of water together and then I
just started to say outloud "i love you". repeatedly.
Right beside me there was a stick that looked like a y.
In front of her grave, in front of the flowers, i stuck it in the
ground, because sometimes i feel like "why?"
Then I took a few stones and next to sister, I put a pebble for my
sister, because they were like sisters. Next to Aunt, I put a stone
for my niece because Rebecca was an Aunt to my niece she was a part
of our family. and next to friend, i put one for me and then I put
the rest around it and put them around the word. I told her happy
birthday.

I looked up and saw another tree and I said, this is so "six feet
under" like the show and started to laugh.

I sat there and I wanted to lay there and it was beautiful and it was
painful and it was fulfilling and freeing.

i went into the information session and read the rules AFTER i
basically did whatever I wanted to.

I went into the bathroom and there was this really ugly green couch,
and I just sat. no reason. I just sad, "fuck it, let me sit". And
that couch was one of the most comfortable couches, I have ever sat
on. I just sat there and thought to myself, "this is a really
comfortable couch. wow." I then went out, no one was at the
information desk, so i took a jewish calendar and then got a map of
how to find grave sites there.

I opened my sunroof, blasted some music and left. Rebecca still feels
like she is with me.

Here are some pictures. i forgot my camera so they are off my camera
phone.

Happy birthday Rebecca,
I love you


~jenn

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