The Whispers of Ovarian Cancer

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!

Happy turkey

I hope everyone had a Happy Thanksgiving.  Mine was OK, food, family - blah blah blah.  I had an enjoyable, pretty relaxing four day weekend which was much needed!  I need to get ready for all the craziness that comes with the holidays. 

Recent events, went to see  Ani Difranco in concert last week and it made me so so happy.  I discovered her my freshman year of college, and instantly became a huge fan.  Over the years I have watched her career, and have bought all of her albums - however, hadn't been to one of her shows in about 7 years.  So it was very nostalgic and most enjoyable.  S0 much so, that we ran home and bought tix to see her again in January!  Yay!

Been back on an upswing with working out.   I do always feel better physically and mentally when I am exercising.  Let me be reminded of that when I go through the winter hiatus.

I have a CT scan tomorrow - joy.  Not excited at all.  Not looking forward to drinking the contrast smoothie, nor the IV contrast which makes me feel like I have to pee (those of you who have unfortunately been there know exactly what I am talking about)

But I am seeing my favorite doc ever next week - my onc.  I have some questions prepared for her.  Last year,  I asked her at what point (how many years of being NED) would she feel comfortable with myself going forward and exploring the idea of carrying a pregnancy.  (For those tuning in - I lost my ovaries to  OC but still have a uterus so I could have a donor egg / hubs sperm implanted).  Her response, upset me at the time was that "a lot of people make it to three years - lets give it more time."  Six months ago when I saw her, I was complaining about some hormonal stuff with regards to being on Loestrin and asked if she would put me on a higher level hormone pill to rid of some of the effects.  She flat out denied, and stated she was not comfortable with that and wanted me to remain on a low estrogen pill.  My concern is, if she wouldn't put me on a higher estrogen pill - will she ever think it's OK to start messing with higher levels of hormones to carry a pregnancy?  She, being from the oncology field - wanting to keep me cancer free - may never say she will approve that idea. 

I have been thinking a lot about this lately.  Because I think that in order to get myself through being ill, through surgery, and chemo.  I was optimistic about keeping my uterus - just in case - I wanted to use it in the future.  I never really allowed myself to process the "what ifs" regarding not being able to. 

Now, I am 30 years old, happily married.  And questi0ning - do I want a family?  OR am I thinking about this so much because it is a challenge that has been presented and I feel like I have to overcome it?  And am I thinking about it because that is what I am expected to do (expected by family, society, myself)?  I don't know if that makes sense, but there is a real defiant part of me that struggles with being told that I can't do something.  And I feel like I was sick for a reason, and is that reason to prevent me from having a family (or a sign that maybe I shouldn't) OR is the reason for me to really sit and ponder whether having a family is something I really want - rather than something that I should do. 

My thoughts are all jumbled in my head about the idea really.  I mean, how does one figure out that they want to be a parent?  And if so, how does one grasp the fact that in order to become a parent the process is going to be long and difficult?  And then how does one make the decision whether or not to put their health at risk in the process OR seek out other methods of having that family?

These are some of the post turkey thoughts.   Hope that you heads are clearer than mine!   I am going to eat some more left overs.

That's F---ed up

My husband and I have taken another step toward being all grown up - we bought a home.  Actually, we bought our home - the home we have lived in for the last four years.  Now, we officially own it.  It's a bit weird, and a tad scary - but it feels really good.  We have already begun making some changes, and over the next few months we will be doing lots of projects.  I'll keep you posted on the transformation!

But, what is F---ed up is that when I was purchasing home owners insurance - the lovely representative on the phone said "any interest in life or other type of insurances?"   Hmmm, life insurance?  Sounds like a good idea.  So, I questioned and to my dismay I found that I cannot get any at this time.   Basically, due to having had cancer a now "pre-existing condition," I cannot qualify until I am deemed cancer free for a period of 10 years!!!  Now, I am not naive I knew there would be some catch.  I knew that having had cancer could make such a process more difficult - but honestly I didn't think it would be impossible.  I was expecting a larger fee, or perhaps a five year period needed clear - BUT 10 YEARS!  I mean (knock on wood) that will hopefully be a possibility but it sucks just knowing that you cannot protect your loved ones just in case something (again, knock) should happen.  I am pretty ticked off by this, and think it's a bunch of BULL!

Thats is my rant for the day, please feel free to join in.

YOGA for OVCA

http://www.health.com/health/herecomesthesun/

I'll be there, anyone else in the NYC area want to join - feel free.  All proceeds go to Ovarian Cancer Research~

The big 3 - oh!

The time has come.  The time for me to move from my 20's to my 30's!!!!!  Today is my last day as a  20something (shit that means I need to change my title to my blog), as tomorrow I cross a threshold into a new decade of my life. 

This day brings many mixed feelings.   On one hand, I feel like I am becoming more of a "grownup" whatever that means.  That as being in my 20's has granted me some sort of immaturity, that will go away now that I am 30.  Even though, as we all know we become adults at 18 so technically I have been a grownup for a while.  I guess in your 30's you are expected to know more.  But I know this is only a frame of mind, and that I will continue to be young at heart in my own way. 

On the other hand, I am really happy to turn another year older.   It's another notch on my "cancer free belt."  Another year has passed, remaining NED.  Another year to be thankful for.  I feel like every year that I increase in age, away from 26 my year of diagnosis - is a reason to be happy and thankful.

As my birthday approached, I have been spending a lot of time contemplating all that has occurred in my 20's.  There have been a lot of life changing events that took place during this past decade.  Here 's a quick summary: attended college, began working, went from having random meaningless connections to the college male - to meeting my OTHER HALF at the age of 21, turned 21!!!! to being able to consume as much alcohol as you can legally, graduating COLLEGE, moving home - w/ my parents - which only lasted 8 months, getting my OWN APARTMENT with my best friend, living on a waitresses salary while going to graduate school, enhancing my learning in my field, getting a job for the first time as a CAREER, the LOSS of my grandfather and my boyfriends father, moving in with my boyfriend, getting DIAGNOSED with CANCER (surgeries, chemo, sickness, baldness etc _________),  getting declared in REMISSION, getting engaged and MARRIED, getting a DOG, buying a HOUSE.......

These were just an overall of some of the big highlights.  That is a lot of shifts, and changes to go through.  Some negative, some positive, all life altering and character building in some way.   I cannot imagine how many changes there are to come in my 30's.  I try not to think about what could / will be.  And just appreciate where I am right now - STILL 29!!!  I'll enjoy these last few hours that I can say that.  Tomorrow, just call me an old lady. 

Something amazing

I am always amazed at how people get connected through the internet.  I always feel grateful for the connections I have made in cyberland with fellow survivors.  Today, I learned about a new way to connect.  An amazing organization for young survivors.  Here is some info.  I highly encourage you to check it out. 

The site is called I'm too young for this.  It was named one of Time Magazines Time Magazines Top 50 websites of 2007. 

AND every Monday evening the excective director of the site Matthew Zachary leads a live show called The Stupid Cancer Show.  Tonight was the first night I listened in and he interviewed Fran Drescher.  It was pretty incredible.  You can go to the web site and listen to the podcast if you are interested. 

I am pretty blown away at what people can do when the put their minds to connecting others and advocating for a larger cancer community to make changes in the world.   Big ups to this organization and I am proud to say that my blog is listed on their site.

  ">

Year Three

Today is three years NED for me.  That is amazing that three years have gone by since I was told I was cancer-free.  I have to say this, it does get easier over time.  It gets easier in the fact that you adjust to the fact that shit happens.  You accept that you have had cancer.  You even get used to the idea that you will constantly have a heightened awareness of your body, and that is OK  because it keeps you on your guard.  And even though your awareness may be more so than it was in the past, it isn't always like that.  There are days, even weeks where you don't think about the idea of Cancer much.  You think of it less.  At this point, I would say something regarding cancer still pops into my head on most days.  But the thinking is different. 

I think three years out is pretty amazing, and I am really happy to be able to be here to say that. 

Oh, a quick followup to my last post (and thank you to those who expressed concerns!)  I felt bad for a week, my doc sent me to the ER because I had really bad abdominal pain.  And due to my history she was not fucking around.  So 12 hours later, I had a repeat of my blood work, a sonogram of my liver / gallbladder and a CT of my abdomen and pelvis (second one in a month).  All tests showed NOTHING.  So what is to explain these two episodes of vomiting, diarrhea and pain - I do not know.  It is unsettling, but I am feeling FINE now.  Good in fact.  I have a followup with a gastro coming up next week just as a precaution.  I am still hoping these two episodes were just some random acts, and that all will continue to be well.  Because I am NOT going back to the ER cause that was awful.  And I will not bore you with my rant about how our health care system SUCKS.