The Whispers of Ovarian Cancer

Inspired by my friend

As per my last post, I wrote about my dear friend Jennifer whose fight with cancer was truly inspiring.  Unfortunatley, it deeply saddens me to admit thats she passed away a few days after that last post.   Her death hit me hard, but more so then making me sad - it has encouraged me to take advantage of life and every opportunity that it brings!  She was an amazing person, and not just because she was a cancer survivor.  I miss her terribly, and think of her all the time.

She is a driving force behind my becoming the a Regional Chair, and part of the Young Adult Leadership Committee for the I'm Too Young For This Cancer Foundation.  Jennifer and I met through this organization about a year and a half ago and I'm thankful everyday that I became a part of this amazing cause.  

On June 10th, the New York chapter of I'm too young for this (or I2Y as wel call it) is having it's annual "Un-Gala."  It's our area's biggest fundraiser of the year.  For those in the NY area, please come out andcelebrate survivorship with us!  Tickets are on sale now!  If you want to donate you can do that as well at http://ungala.i2y.com

Even though I am sad that Jennifer can't physically be there with me, I know she will be there in spirit!  

My 100th Post

This is apparently my 100th blog post!  Woo Hoo.  Unfortunately, what brings me to write is not out of joy or pleasure.  I am writing because I found out today, that a dear friend of mine may not have too much more time.  She, is only 30 years old and has been battling cancer for the past two years.  When I say battle, I mean battle.  A fight like one I have never witnessed.   Her cancer started in her heart, spread to her lungs, and is now in her brain.  She has had multiple open heart surgeries, hundreds of chemo treatments, nausea, fatigue, infections, too many tests and scans to count.   There is only so much fighting one person can do, and on one hand I want to tell her to keep on fighting - but on the other I want to assure her that it is understandable to want to stop.  I saw her today in ICU, after suffering a stroke.  She is paralyzed on one side of her body, and is suffering.  It was devastating to see.  And has made me very very angry and sad.  I ask for those of you out there who pray, please do so for her and her family. 

And after reading this please try to take a step back and appreciate all that is around you.  Because after seeing what horrible things are possible, at any age- for anyone - really puts things into perspective. 

Sick of it.

I am just sick of it.  Sick of having been diagnosed with cancer, sick of thinking about it, sick of worrying, sick of having reminders around me all the time of what happened, sick of being angry, sick of being frustrated, sick of being jealous and resentful of others without this burden, sick of being the "go to" person because I am a cancer survivor, sick of getting tested, sick of getting test results, sick of feeling powerless, sick of not knowing, sick of night sweats, sick of hot flashes, sick of periods that are barely periods that sometimes come and go when they feel like it, sick of being irregular, sick of feeling older than I am, sick of the idea that I cannot bare children, sick of all the feelings that topic brings up in me, sick of people around me having babies and my feeling negatively about it, sick of  the thought of my closest friend having a baby doesn't only bring up joy and happiness, sick of the negativity, sick of being a survivor.

Where does this rant come from?  I got my blood work results back.  And they remain consistent at 8.  Now, I KNOW that I SHOULD be grateful, happy, relieved, etc.  I SHOULDbe glad that my level hasn't gone up again.  But, the truth is at this point I am just riddled with anger and resentment.  Annoyed that the level didn't come back down to the usual 5 or 6.   Annoyed that I cannot just appreicate that fact that I am well and that it didn't go up.   I really want to feel happy, relieved, hopeful - but I don't.  Not today.  Not yet.  I just got the results and all I can really feel is just frustration and anger.  Both are feelings that I don't like - I don't like feeling this way.  

So sick of it.  Just sometimes wish all of it would just go away and leave me alone.  Reh.

Word.

So, the new year is upon us.  And, this year - 2009 will mark my five years from diagnosis.  January was the time of diagnosis, and July will mark five years NED.  They say that five years of no evidence of disease is a pretty good indicator that statistically, your cancer is gone.  So, a big year to say the least.  I don't want to get  ahead of myself, and jinx anything.  After all, my last blood work did show a slight increase in level, and I don't have a follow up until next month.  But, as the new year gets closer,  I am spending some time contemplating what it means to be so far out.  

I have a favor to ask.  I am asking all of you out there in blog world who may (or may not) be reading this for some help.  I would like to know in your own words (well word actually) what it would mean to you to be five years cancer free.  I am looking for one word actually, that can summarize what it means to be NED for five years.  I will fill you in on what it is for at a later date, but for right now I would like to know just a word.

Thanks, and I would like to wish you a very Happy and Healthy holiday season!!!!

8

So, today I saw my oncologist.  Something that I look forward to, as she is amazing and always really reassuring.  I haven't seen her in 9 months, and was anxious about our appointment.  She tells me that my CT was clear - thank goodness.  And that my CA-125 went from 6 to 8.  Now, I know that 8 in itself is nothing to be concerned about (which is what my doc said).  However - in the years since I was declared NED - my number has been waivering between 4 and 6.  So, now here I am at 8. 

I know what you are going to say - that these levels jump up and down - and that is totally normal and expected.  And I agree with you.  But my brain just doesn't totally agree.  I am full of anxiety about what if this is an upward trend.

So, to ease some of my anxiey my doc gave me a script for another blood level that I will have done in 3 months.  I'll just be praying for lucky number 7 to make me feel better! 

FRUSTRATED!~!

OK, now today is the second time that I wrote a post for this blog and tried to preview it - and the post was lost.  I am sorry but I can't retype all that I just did again!  I am so frustrated.

But, there are some important tidbits...

I celebrated four years NED.

I participated in the I'm too young for this second annual "Stupid Cancer Gala" which was amazing.  See pics here

At the gala, I briefly met a young survivor there and was turned onto her web site to check out her music.  I learned to today in a NY Times Article that she recently passed away.  She was only 30 years old!  Please visit her website, and learn more about this incredible woman.  On the site, you can download her music for $1, and the donation goes to a fund created to help pay her medical bills!  Please check it out.

I am so sorry but I just cannot write more - again.

OK SAVE - :)

Revlon Run Walk # 5

This year on May 3rd, I will be particpating in the Revlon Run Walk for Women's Cancers for the fifth time.  I can't believe it's number five.  I am excited about the walk coming up, and tend to look at this event a lot differently than I used to.  When I was first diagnosed, I felt a bit obligated to participate - and felt very overwhelmed by the idea of being a survivor.  The second year, I felt so excited about it - being a year away from being diagnosed and being well.  Over the past three years, I guess I have begun to see this event as a chance to give something back, and to continually remind others (* and myself) that though I have been out of the woods (wood- knock please) for a few years - that one can never / should never forget.  Here is a link to our teams site, should you want to join our team or make a donation.  Please feel free!

All About N.E.D.

Sign It and Pass

I have just been informed of a petition created to support the creation of a patient bill of rights for adolescent and young adult cancer survivors.  Check it out.  Please sign it and pass it on.

SeventyK

Cancer and Work

For those who don't know it, I am a Social Worker.  I work as an adolescent therapist at a special education High School.  I love my job, despite the fact that it can be emotionally exhausting.   As a therapist, part of the work being in touch with yourself and constantly gaining self awareness.  To see what types of topics you react to, and why.  Exploring your feelings that your clients bring up in you, is vital to doing  a good job. 

I have had some challenges along the way with regards to Cancer in my work.  First, having to disclose my illness to my clients at the time of going through treatment because - well I was bald.  And not wanting to lie or cover something up to them - to not be one of the many others in their lives who have not been honest or forthcoming with them.  So I told them, all that they asked and wanted to know.  Since my recovery, and now not being sick - it is no longer a topic of conversation at work.  (Even though I have had the same coworkers since - which at times is comforting and at others it bothers me - especially when someone says "wow Jen, your hair has gotten so long!  Duh, as if four years of growth wouldn't amount to anything)  And, all the students who I worked with four years ago when I was ill - have since moved on from our program.  So, my newer clients have no idea about what went on - as it should be.

But, there are some instances where it becomes very challenging to separate my feelings.  A student told me the other day that his uncle (whom is like a father figure to him) was diagnosed with liver cancer.  The following day, a female student told me she'd been to the gynecologist for the first time and had a cyst on her ovary.  These stories, their concerns, their fears, bring up so much in me - that at times I am flooded with feelings that it makes it more challenging to do the work.  Like when my student told me that his uncle "is going to die," I felt myself compelled to tell him that "having cancer is not a death sentence."  That was not about him, or where he was - it was about me.  When my female student told me about the cysts and no intent to followup with a doctor, I became enraged and basically told her she "had" to go to the doctor.  As opposed to exploring with her why she was avoiding it, I lectured her like a parent.   Now, the good thing - is that I am aware of these things - and I know why I reacted the way I did - and I know that I need to better control my responses about this topic.  But it's hard.   The feeling that I have about cancer are so real, and so raw  - that any trigger is capable of creating an emotional - not rational reaction. Which on a day to day, is fine - but in my work it makes it hard. 

So, I just wanted to share some of how having Cancer continues to affect my work - and of course affect me.  My supervisor a while back said to me "I'd love to hear more about how your experience impacts your work."  But I truly avoided that topic with him - due to fear of being overloaded and breaking down.  But I know it is something I need to process and constantly keep in my awareness.   I guess I should talk with him about it.  Maybe I will. 

08

My new years resolution of 2007 were  "to drink at least one glass of tea each day.  - to take care of myself - to exercise - to sleep well - to avoid negative thinking - to be kind to others - and to myself."

Let's assess how I did with those.   I did greatly increase my tea intake from years past.  Investing in all sorts of interesting types and flavors.  My personal favorite African Rooibos, Nana and of course Green.  But, I do realize as I think back to the entire year - that my tea intake did cut back during warm Summer months.  But when there was a chill in the air, I most certainly did have tea on most nights - as I am having RIGHT NOW - YUMMS! 

I think I took pretty good care of myself, physically speaking.  I continue to exercise.  I actually have been running more and more, and being able to sustain for longer periods of time.   I have come to the sad sad sad realization though that ones body does not rebound as quickly as one ages.  As I crossed the 30 threshold this year, I realize that if I do lax on working out - my body shows changes very very quickly.   

I think I have slept well in 07, trying to get at least 7 hours per night.  Aside from the annoying night sweats which plague me on most evenings causing me to wake up and have to change frequently.  Damn hormones, or lack thereof.   

Have I avoided negative thinking?  I think I have not been as negative as I could be, however, I do have my moments.  But don't we all?

And, I do believe I am always kind to others.  Sometimes not my husband, or my parents (but isn't it those who we are closest to that get the brunt of it???) .  But everyone else, yes - always kind.

My new years resolutions for 2008 are as follows, though in no particular order....

1.  To renovate OUR home (as it became our home this year) Next project our bathroom!!!!

2.  To go through all of my photos (for those who don't know - I am a sucker for holding onto every last photo - or piece of memorabilia that I feel is significant.  In other words I can't throw things away that I find to be important - but this has led to boxes and boxes of stuff).  My plan, is to go through my albums, throw pics away and scan in to the computer all those I would like to preserve.  yay project!  In fact, I began this process today - no time like the present.   I will periodically be posting some of my favorite pics of all time.  But for the new year, here is one I scanned today one of my finer moments in the third grade!!! 

This is when my mom was still dressing me and cutting my hair!!!

3.  To embrace having more time w/ my husband, because thankfully he got a new job and his work schedule will be changing.  No more night shifts, no more going days without seeing each other awake.  So my resolution, is to enjoy our time together and try not to bicker more just because we can.

I wish everyone a HEALTHY and a happy new year (because lets face it - health really does have to come first).  Cheers!