Denise

We have started a new feature on our web site called #YourFight.  It provides a chance to let readers share their battle with cancer in their own words.  We will be featuring these stories on a regular basis.  If you would like to share yours, follow the link here to find out how.  The stories and treatments you will read about are specific for each individual and may be different than your own.  These posts are designed to tell the stories of the reality of cancer and it’s impact on our lives, not as medical advice.   If you or anyone you know is going through similar battles, we encourage you to be an informed health consumer and seek professional medical advice.

Today’s post comes from Denise ( @Servivorgirl on Twitter) who describes her unbelievable battle with ovarian cancer.  Nobody really understands the battles that occur behind the scenes with cancer and Denise provides her own personal reflections and insight of how cancer has impacted her life.  Thank you Denise for sharing, our thoughts are with you.  Denise in her own words……..

Abolish cancer story: Ovarian Cancer, Stage IIIC      Living, Dying, Living again

Hello, my name is Denise. I am a single female and I am surviving Ovarian Cancer.  On July 29, 2009 I was diagnosed with an aggressive form of Stage IIIC Ovarian Cancer, my life will never be the same.  I never could have imagined the devastation, the pain, and complete uprooting and transformation of my life, and to the lives of those in my family, because of this terrible disease.

I am a transplant to Seattle because of my need for help from my loyal and loving family while I endured chemotherapy.  I stay in Seattle to be with my family and to remain under the care of my gynecological oncologist.  I have other family in Colorado and California, and miss them dearly. The family members here in Seattle literally put their lives on hold for long periods of time to help me.  People flew thousands of miles to help me move or take care of me while in California.  The emotional toll on all of us is overwhelming, but we are doing OK, because we love each other so so much.  I have the best family one could imagine, I am lucky and blessed.

Prior to my diagnoses, I was working full time, barely getting by, but managing.  I lived in a nice little community in northern California, had a few very good friends and was really hoping to find a healthy relationship. I had decided that I wanted to get married. I was embracing  my spiritual connection with God but a I was mess medically.  Although I was struggling, I was able to pay bills, go to church and talk with my family on a regular basis.  For a 45 year old single female, I didn’t make very much money, but I could take care of myself. I wasn’t totally happy, but I was getting by, making plans for a better life. I was hopeful.

I was diagnosed with rheumatoid arthritis at age 15, and that event was a devastation to me both physically and psychologically. The benefits of having RA, and now having cancer, are that I am used to pain, used to fatigue, and have developed a strong will to make it through traumatic events. It had helped me to be prepared for the day I was forced to face Ovarian Cancer.

It is a bit of a miracle that I am alive, because of how far the disease had progressed prior to surgery. I had no idea that I had Ovarian Cancer, and to be honest, after the diagnoses, I remember asking myself, how come nobody knows about this.

Ovarian Cancer is sneaky, it causes your body to go through changes that mimic other problems, mainly gastro-intestinal, and even when you know something isn’t quite right with your pelvic area, you must also rely on an intelligent doctor who is aware of the “whispering dangers” of OC.  None of my doctors caught it even though my body was telling them something was amiss, not one.

My surgery consisted of a total abdominal hysterectomy, removal of my appendix, omentum, many surrounding tumors and lymph nodes. The poorly differentiated cells had attacked all of my female anatomy, appendix, bladder, multiple lymph nodes and omentum.

For several months prior to surgery I was only able to eat one meal per day, and drink health shakes for dinner. I got too full and just couldn’t eat.  At the same time my belly was swelling up like a balloon and my abdominal pain was so severe that I would have to lay down every hour for 5 minutes just to keep from crying.  I had a strange rash on my belly, and my belly button went from an “innie” to an “outie”.  I fell at a department store one day because I was too weak to pull out a shopping cart.  It would take pages and pages and pages to tell you about all the medical mishaps leading to my surgery, so I wont do that to you. 

Approximately 5 months prior to my diagnoses, my regular gynecologist failed to do a bimanual exam.  I had been complaining of severe fatigue, had cervical dysplasia, abdominal pain, horrible heavy periods intermixed with absences of periods for months at a time.  I had bouts of severe abdominal pain off and on over several years.  I got constipated easily, had urinary issues, back pain and even started having hot flashes (up to 10 a day).  Then all of a sudden when my belly grew, my periods stopped altogether.

Prior to 2009, I had a trans-vaginal ultrasound, and never got the results of that.  In the time from 2006 and 2009 I was told by three different doctors that I was too young to have ovarian cancer.  I was denied a CA 125 when my fatigue, pain and periods were out of control because of my history of RA (inflammation can elevate CA125).  Previous colonoscopy revealed nothing.  Yet I knew there was something wrong.

I did not know that I was BRCA 1 mutation positive until I came to Seattle.  It’s a very expensive test, but I believe that it should be made more available and less expensive.  Knowing about a genetic predisposition to ovarian cancer is critical.

The irony in learning this information is that when I was 18, my rheumatologist told me not to have children.  I was devastated.  He was a kind doctor and I trusted him.  He said “you won’t be able to care for them with your bad hands, it will be too hard.”   I became severely depressed from having RA and being forced into accepting that I will never have children.  I felt ugly, got heavy and withdrew. It really messed me up. My life for years was very destructive.  I tried to commit suicide because of it. I never found a man who wanted to marry me.  I guess that was not meant to be.  Now I just want to live.

So 27 years after I’m told not to have children and that I have a crippling disease,  I learn that I have a genetic mutation that  potentially causes ovarian cancer.  If I would have known this back then, I would have had a prophylactic hysterectomy at that time.  The irony.  I could have been saved from ovarian cancer, maybe.

My RA caused me to lose my career back in the mid nineties as a health care professional, and ever since then my income dwindled downward.  When I was diagnosed with OC, I had been with a job for over two years, for the first time since 1995.  My RA was under control with a biologic drug. I was just getting back on my feet, preparing to rent an apartment on my own and to have a dignified life.  I have lived in over 26 places in my life, most of them after college, because of poor health and not being able to afford rent. I was forced to stop taking the only medicine that controlled my RA when I was diagnosed with OC.

So on July 29, 2009 God blessed me with the precise and delicate hands of a gynecological surgeon in California to save me on the table.  God graced me with an amazing gynecological oncologist and treatment team in Seattle.  Most of all God blessed me with a very loving and supportive family that had taken me in and helped me get back on my feet after chemotherapy.

Chemotherapy and cancer changed my personality some, I got depressed, paranoid, anxious and down right angry.  Then I started to become more peaceful as the poisons started leaving my body.  I have ongoing mental issues with forgetfulness and confusion sometimes. I am also more sensitive to life, people, their needs, and want to help.  That is a good thing.

Chemo steals your soul and God rebuilds it.  I had my grandmother’s rosary on my tummy every day for 9 months after my surgery.  I still have all kinds of abdominal issues, pain, real bad fatigue, severe hot flashes, anxiety and nausea.  My RA is not in control. But I’m here, breathing, walking, planning, giving, loving and living.

I now reside in a one bedroom apartment, near mom and my sister’s family.  I have to confess that I didn’t want to move out of mom’s house.  I loved living with her.  My mom is now on dialysis, as she has had Type I diabetes for 40 years.  I pray that my cancer did not make her more sick.  It was such a stressful time, and I hope I am not to blame.  She did so much for me……….that’s another story.

I have a part time job now that allows me to live on my own while figuring out what I will be able to do to keep my disability.  I can’t work full time, ugh.  It’s a lot of pressure, I don’t want to fail again.

Looking back, I can’t figure out what I could have done differently.  When you are told you are too young, three times by three different doctors, to have ovarian cancer, and then almost die from ovarian cancer…..what can a woman do?  Looking back I should have followed my gut when I met certain people and listened when my instincts said, “run now”.  Maybe I would have found different doctors, but maybe it would have been the same no matter what.  Only God knows those kinds of things.

I try not to think about statistics and my life expectancy.  I’m just trying now to do everything I can to raise awareness of Ovarian Cancer.  I have a blog that helps me to share my journey and I have started a cause to get people to support a request that Facebook turn it’s pages “Teal” during September of 2012.

I would never have made it through this ordeal had it not been for my deep faith in God and that he helped my family, friends, and medical team take care of me.  My dear mom flew to California along with my aunt and sister for my surgery.  My sister and brother came to help me move to Seattle.  My brother drove my car from California to Seattle, loaded with all it could carry.  The rest went with an former boyfriend in his SUV to Seattle.  Everything else had to go.  That was the second time in my life I lost most of my possessions.

My mom let me live with her for two years.  My aunt and sister called me almost every day.  My cousin and uncle called me almost every day, from Colorado.  My father would call me every week from Colorado and thanks to test messaging I could chat with my brother, sister, aunt and friends all the time.  There are so many loving souls to thank.  It’s a miracle I am here.

My mission is to stay alive as long as I can, treat my body well, improve my happiness and energy every day, love my family and friends like there’s no tomorrow and spread the word about Ovarian Cancer.  I feel best when I allow God to help me, and in him I find my strength.  Thank you for reading my story.

My blog is http://nobodyhasovariancancer.blogspot.com/ and on there you will see my link to the cause:

Teal to Heal, Turn Facebook Teal in September

Love,

Denise