I am blogging on this site for the last time.  I have finally broke down and decided to pay for a blog.  Please visit my new site, see you there

A little promotion to a worthy cause.  This April 30th in NYC, I am leading a team in the Revlon Run Walk for Women's Cancers.  Please feel free to check out my teams site and make a donation if possible.

I got a call the other night from my soon to be mother in law, that my fiancé’s grandma had at sonogram and it showed a large complex cyst on one of her ovaries.  OYE VEY!!!!

I think time stopped in that moment.  I was stuck in some parallel universe of past and present.  Flashing back instantly to the first time hearing that term from my gynecologist.  I thought, the word complex can't be good.  I mean we all want our organs, body parts, cysts to be simple right???

After a few minutes of being stuck, I snapped out of myself and immediately called her.  I felt this strong urge to talk to someone who could possibly be having similar experience that I did initially.  I felt the need to be supportive, and informative, and just there. 

I could hear the anxiety in her voice.  I mean why should she be nervous????  She is only 78, she only has lost her mother, brother, husband and son to cancer.  Her remaining child, her daughter has been surviving for about 6 years with this awful disease.  And now here she is being told she has a cyst that needs to be looked at.  Why should she be concerned???? 

After we spoke of a plan, to get a CA 125 done, and to meet with an oncologist about surgery she says to me..."I feel like my family has been targeted, like we have been plagued." 
Ah, the old conspiracy theory.  My therapist had asked me "do you ever wonder 'why me?'"  Not really, where is that thought going to get me??  I am not going to get an answer; it's just a waste of time really.  Do I think I have been plagued as grandma said? No. 

But I can see why she would feel that way after sustaining sooo many losses by the same disease taking different forms.   I can see why one would think that they have been cursed in someway. 

Me?  I just think that people get cancer, one reason of another.  I unfortunately was one of those people, but I never really pondered why.  I have more important things to focus on, like my new grandma.

The phone rang....my heart races and then stops and the nurse on the phone looks through the fax for my blood work results.  It feels like an eternity for her to say one number....

"Your CA - 125 is less than five" says the nurse.

"less than five????" I repeat back to make sure I got that right.

"Yes."

WHEW, my whole body just goes limp. My heart starts racing, as if it realizes that it had stopped for  few moments and now needs to catch up.  I just stare into space trying to take it all in and remind myself to appreciate this positive news and remember how this feels to exhale and just relax for a moment.

Waiting for your test results back from your doctor has to be one of the most challenging things when dealing with Cancer.  You have CT Scans, blood work, MRI's, etc. done and it takes about on average 3-5 buisness days to get the results back.  So after day 2, you get this deep pit in the bottom of your stomach, you can't sleep, you can't eat (except sugar and caffeine).  By day 3, you become a ball of nerves unable to concentrate, unable to be in the present because your mind is out there playing the "what if" game.   

Day 4, well the only time that I ever knew what it felt like to make it to day 4 without results was probably the most important results I was waiting for.  It was when I was waiting confirmation that I did indeed have Ovarian Cancer.  Day 4 came after my surgery and we still did not have biopsy results back.   I grew sicker and sicker and was literally a couch potato unable to communciate with the world.

Day 5,  my doctor told me that they wanted to do additional cross sections of my biopsies so we wouldn't have the results for another day.  Now I was going into catotonic mode, barely eating or sleeping or communicating....just waiting.  I remember just being on my own planet, feeling like nobody could reach me until the voice of my doctor was there to bring me back to sanity.

As I said, I have not made it to a day 4 in a while.  I am now here on day 3, I already know that my results are at the office.  I am just waiting for my doctor to have the time to check them out, and give me a call about them.  That is almost worse, because I know they are there, a piece of paper sitting on a desk waiting to be read.

Sometimes I feel like nobody can hear me.  I tell people, (not many people - only the select few that I trust with my feelings) that I am scared about getting my blood work results back.  I am scared that my counts will rise even the slightest, possibly indicating a recurrence.  They're response is often "the results will be fine" or "you are worrying / getting yourself crazy for nothing" or "you have to think positively."  Don't you hear me?  I am telling you I am scared, can't you just let me be scared instead of trying to talk me out of it.  I just want them to say "UM YEAH, you have a good reason to be scared and it's OK whatever the results are we'll deal with it." 

Now, I know that people have a hard time talking about Cancer.  Especially my closest family and friends who are obviously emotionally involved and invested.  I know there is a healthy level of denial that gets many of them through their day thinking "Jen is now fine, it's over, the Cancer is gone."   I can respect that this is what they do to protect themself from uncomfortable feelings and thoughts.  To protect themselves for the idea that it may not be over. 

But that doesn't work for me.   Not when every three months I go through these tests that are just agonizing.  I keep thinking as more times goes by and I get through more exams, it will get easier, and less stressful.  But thus far, it hasn't.  In fact, now it feels like my stress level is at an all time high. 

I wish someone would just hear me, and listen to me.  That's it.  I am really not looking for answers from them.  Just an ear.

One of the biggest problems with being diagnosed with Cancer, is distiguishing between problematic symptoms and normal everyday bodily functions.   Not a day goes by, when I don't feel my stomach and think to myself "am I more bloated today?" Or I have a twinge in my side and I think "What was that??? Could it be the Cancer spreading?"  It is constant and it is annoying.  I would love to go back in time and not be so overly concerned about my body.  But I tell myself, that I have to pay close attention because can't let any sort of signal or whisper go unnoticed or unheard.

I am now constantly listening, especially on a day like today when tomorrow I will be going for routine bloodwork that can confirm my biggest fear, the fear of reoccurrence that I live with everyday. 

I have to say, since day one of being diagnosed with cancer people go out of their way to tell me how great I look.   One of the first things out of peoples mouths when they see me is a compliment on my appearance.   You would think I would find it flattering, but I find it to be rather annoying.  When I was first diagnosed I got "you look so great, I can't believe you have cancer."  Then when my hair fell out I heard "you are so pretty, even without hair, you know not many people can pull that off."  OR "you don't even look sick, you look so healthy and alive." 

Now that I am "recovered," I hear "You look so great!"  "Your hair looks so great like that."  "You look better with short hair than long hair."  "You should keep your hair this short because it suits you"
BLAH BLAH BLAH

Do they think these words make me feel better?  Do they think that I like hearing how wonderful I looked bald, or now how great my hair looks short?  Do they think that by saying I look good can imply that I must feel good?  Do they think that bringing constant attention to my appearance and how it has changed is a pleasant reminder of what has happened?  Do they think that I may not like my hair short?  Do they think I wouldn't in a heartbeat have my hair be long the way it was before chemo?  Do they think that their opinion of how I look means any thing to me at this point because HELLO I have had lots of shit on my plate and their compliments don't help!!!

NO, because you know what?  They don't think before they speak.  People should really listen to themselves more often.

It is said that Ovarian Cancer WHISPERS, known as a "Silent killer."  The reason behind all of this quiet is because the symptoms of this cancer are vague and can be justified as other common female ailments.  The common hints that this cancer can be lurking about are: bloating, irregular periods, break through bleeding, constipation (changes in bowel habits), cramping, and lower back pain.  Unfortunately, often this disease will remain unnoticed because women aren't listening to their bodies and hearing these whispers that something is terribly wrong.

 

It was in mid-August 2003 when I began to listen....

I went to my OBGYN for a regular routine yearly visit.  As my doc was checking things out, she pressed around internally and on my abdomen, and at one spot I cringed.  The first whisper that I actually noticed.   In fact, I winced and am so thankful that she heard me and asked "did that hurt?"  If she hadn't asked me, I am not sure if I even would have spoken up.  Those three little words saved my life. 

 

She suggested I go for a sonogram right away, which I did the following week.  I wasn't even too concerned being I was only 26, and thought what could possibly be wrong down there???  I got a call from my doc two days later asking me in to see her immediately to discuss the results.  My anxiety began to increase.  She told me I had a complex cyst on one of my ovaries and it needed to come out IMMEDIATELY.  I remember thinking about that word, as if I had to run into surgery at that moment.  I asked her if this could be anything dangerous and she responded "At your age, very unlikely."  She referred me to an oncologist.  Well, if it wasn't dangerous WHY am I going to see an oncologist??? 

 

So I went, to see the cancer doc.  Who gave me an internal exam and said "hmmm I think what we are feeling could be endometriosis."  Now, he didn't say that it definitely was, in fact he was suggesting that I have a laparoscopy done just to get in there and biopsy to be certain.  But all my brain needed to hear was it could be something other than cancer, and I went with that.   

 

I spoke with a friend of mine, who I knew had struggled with Endometriosis and went to see her doc.  He looked at my sonogram and asked we do another one to compare.  He agreed it COULD be endo, and suggested I go on the pill for six weeks and then have another sonogram to compare.  He said "if it is endo, it will most likely shrink."  So, I went on birth control and came back to him and the sonogram showed the cyst hadn't shrunk in fact it had grown slightly.  He then agreed with the oncologist that I should have surgery to see what is going on down there....

 

As standard surgery prep, I had blood work done and my doc ordered a CA 125 count.  I didn't even know about it, or knew what it was until I got a call from my primary physician sounding concerned stating that this level was elevated and that is abnormal.  Now, a CA 125 is a Cancer Antigen blood level that can sometimes be correlated with having cancer cells in your body.  A normal level would be between 1 - 35.  Mine was 38.  Just to put that into perspective, some ladies have numbers into the thousands, and here mine is at 38.  AH, another whisper.  Nothing was yelling out YOU HAVE CANCER YET!  My doc said to me right before we scheduled a surgery date, "a 38 level could be anything, I am not concerned."

 

On December 29th, I was going in for this laparoscopy to see was this endometriosis?  OR something else?  As I woke from surgery, I remember my doc in my face telling me he biopsied a bunch of sites and that the initial results came back positive for "borderline Ovarian Cancer."  My response was "so I have cancer?" and he says "NO, it is similar but not cancer." 

 

Now I am thoroughly confused and I research this term and learn that "borderline" refers to the slow growing, non invasive type of cancer cells.  That it indeed was a type of cancer, but not "as dangerous."  Now the whispers are becoming louder and I start to really get concerned.  As I do more reading on the internet, and learn that I may loose my ovaries.  Not having had children yet, I grow more and more anxious at that thought.

 

I make several appointments with the BEST Oncologists in the area to see who would indeed open me up and go in and remove these borderline cells.  I decided to go with the Cancer King, Memorial Sloan Kettering Cancer Center.  I met with a surgeon and was scheduled for a laparotomy two weeks later.

 

On January 27th, I went into surgery again, this time a much more invasive procedure with intent to remove cysts, biopsy all over the place for additional cells, and try try try to leave me some piece of my ovary.  I woke up and learned that not only did I have Borderline Cells, but ALSO MALIGNANT cancer cells on both ovaries!  Now I am half conscious after surgery but there is YELLING in my ear, saying "Oh my god, I have CANCER."  My surgeon left in a quarter of one of my ovaries because he said it looks healthy.  He did though warn me that if the final pathology comes back positive the rest of that ovary should come out.  That is a lot of information to take in all at once.  My surgeon was very optimistic that he got all the Cancer out, and that I would recover and not need further treatment.  This made me somewhat relieved and able to get through the next few weeks of agony at home being bored and in pain from surgery.

 

I got a call on February 7th, that call was it.  The final pathology came back positive for Cancer cells in not only both ovaries, but in the fluid in my pelvis and in my abdomen.  I was told I was a

Stage IIIA.

As a result, I would need Chemotherapy to begin right away and also another surgery afterwards to do biopsies again. 

 

I remember feeling as if I had just received a death sentence.  I was so afraid of the future and what would happen to me.  How would chemo be?  Would I get real sick?  Would I loose my hair?  Would I ever be cured???

 

Well, on Feb 20th I met with my medical oncologist (who from the moment I met her made me feel strong and confident) and began chemotherapy.  I had six rounds of the Carbo/Taxol cocktail, once every three weeks.  I have to say, I really impressed myself during these few months.  I was like a high speed train and nothing was stopping me.  I don't even think I looked around during this time, I was on fast forward and I knew what my goal was and I didn't loose sight of it.  Even loosing my hair didn't phase me much, I became much more stylish and was forced to create headwear to compliment my outfits!

 

On June 8th finished up Chemo, as I watched my CA 125 shrink more and more down to a 16 - 12 - 9 - 8.  Had another surgery on July 6th which declared me NED (no evidence of disease)!!!  The hardest part was knowing that I will never be able to have a child of my own.  They had to take out my remaining ovary.  Thankfully, they left in my uterus with hopes some day I can implant a donor egg and still carry a pregnancy.  This was a really hard thing to hear, and to tell you the truth I don't know if I have made peace with this yet.   As thankful as  I was to be in good health, and done with chemo, I am saddened by this loss, the loss of my fertility. 

 

Now, It is seven months later, and the fear takes hold often.  I fear that I am not listening hard enough to my body and I will miss one of those little whispers and the Cancer will start to grow again.  My doc tells me I am in the 80 - 90% of the Cancer not returning.  I try to believe that.  But there is always that 10%.   I am on a routine of CT Scans every three months as well as a CA 125.  My last count was a lovely 5 and my last scan was clean.

 

I feel good, but am scared.  A feeling I was not to familiar with before.  Thankfully, I am becoming a better listener and I hope that other ladies out there will hear this and listen too -