What they never told me

When I was diagnosed with ovarian cancer, I had the benefit (if you can call it that) of having seen every woman in my family battle breast cancer along with seeing my step-dad battle colon cancer.  Therefore, I was blessed with tons of support from family members who had been through it (some more than one time).  I was given tips and tricks for dealing with chemo, hair loss, foods to eat, etc.  I am also blessed by having the support of friends, co-workers, and my bosses as I near the end of my routine treatments. With any luck, I will stay in remission. However, there are things that I have learned during my journey and I’d like to share some of them in case anyone may benefit from them.

No one ever told me (in no particular order):

  • Some of my friends and family would distance themselves and while others I didn’t expect would be a source of support.
  • How unimportant some things are when my life was on the line.
  •  I would have a ‘front butt’ after tumor debulking surgery and that my belly button would be moved in the process.
  • My incision from the surgery would not heal right away and I would end up with a seroma.
  •  I would find a new use for maxi-pads when my seroma started gushing on a Saturday.
  •  I would teach oncology nurses and a resident how to ‘wick’ a seroma.
  •  Potential side effects of chemo included removing my ‘filter’ when I had something to say.
  • How nice it was to not have hair.  I could not have a ‘bad hair day.’ I went from 20 minute showers – shampoo, conditioner, shave, rinse out the conditioner – to being able to shower in 90 seconds flat.  I had no hair to style, no eyebrows to pluck, and no lashes to put mascara on so I had more time to sleep.
  • I would save money because I was not buying hair products.
  • I would look in the mirror and not recognize myself.
  • How really big my head is.
  • It’s o.k. to sleep at odd hours.
  • I could stay clear of negative people.
  • It’s o.k. to go to the store in my pajamas.
  • I could do things I want to do and not feel guilty.
  • Once I was in remission, people would stop calling me, emailing me, and asking me how I am doing.
  • Being diagnosed with late stage cancer doesn’t mean terminal cancer.
  • Being ‘sick and tired’ takes on a whole new meaning.
  • Losing energy and stamina so quickly when chemo started did not mean that it would come back as quickly.  In fact, it takes a very long time to return.
  • Complete strangers would pray for me.
  • I could sweat so much.
  • My fight against cancer would serve as inspiration to some people to eat healthier and to exercise.
  • I could have pain from numbness.
  • I’d be labeled for the rest of my life. My own PCP has the sphincter police answer his phone and I have to be assertive to get in for a regular visit.
  • About the kindness of strangers, random acts of kindness, & the power of prayer. I can truly feel those around me.
  • If there’s ‘a small chance’ of something unexpected that might happen, it would happen to me.
  • Some people stared & others made no eye contact when I wore a scarf.
  • It’s o.k. to ask for help.
  • I would go to a conference where I knew absolutely no one and leave with many friends.
  • I would go to Capitol Hill to speak with the staff of U.S. Senators and Congress to advocate for research dollars and awareness of ovarian cancer.
  • I would meet Miss U.S.A.
  • I would complete a half marathon exactly one year after my tumor debulking surgery.
  • Being on a dance floor with a boatload of cancer survivors belting out Gloria Gaynor’s “I Will Survive” would be one of my most-treasured memories.
  • There are no more bad days – there are now only good days and great days.  As far as I’m concerned, the only bad day I’ll have is the day the good Lord takes me to His home.
  • My teenage son would not be embarrassed to be around his bald mom and would also wear a teal ‘Fight Like A Girl’ t-shirt to school on my chemo days each week for 18 weeks straight.
  • My retired Navy sweetie would keep his head shaved in support of me, also wear a teal ‘Fight Like A Girl’ t-shirt on my chemo days, and be my biggest advocate.
  • I would start a blog – for myself as a form of therapy – and that it would be read around the world and help people.
  • I hadn’t truly lived until I realized I might not be around to see my son grow up.
  • I’m stronger than I knew.

These are just a few of the many things that I’ve learned.  If you are a survivor, I encourage you to share your thoughts here as well. We all have something to offer to help others who are on this journey with this insidious disease.

Video

Getting outside of my comfort zone

This past July, I had the privilege of attending the 15th annual Ovarian Cancer National Alliance conference in Washington, D.C.  I did not know a single person before going but I wanted to step outside my comfort zone and see what this conference was all about since I’d heard great things about previous ones.  The weekend was full of information about clinical trials, the latest research, and loads and loads of support from numerous organizations as well as fellow survivors.  I had the honor of meeting – in person – some of my “teal sisters” that I’d met through an online support group.  The energy and positive vibe throughout the weekend was fantastic.  I learned so much from other survivors from how to deal with side effects to how to deal with stress to nutrition guidelines to getting involved in advocacy.

We had fabulous speakers including the physicians with the latest research, people who spoke about their personal journeys or the journeys of their family members, and Jack Andraka also spoke to us.  He is the 15-year old who won the Intel award for developing a simple test (which only costs 3 cents) that has so far been 100% accurate in detecting pancreatic, ovarian, and lung cancers.  His test hasn’t yet been entered into human trials but he hopes to do that soon. He is a down-to-earth person who truly wants to find an early detection test for cancer and he may have found it.  I, for one, am very grateful for his research. If you would like to see a bit more about him,  please click the link: Jack Andraka Interview with Diane Sawyer   Our keynote speaker was Miss USA, Olivia Culpo, who had been crowned a few weeks before the conference.  Her mission for this year is to raise awareness about breast and ovarian cancers.  She is a very well-spoken, kind, and intelligent young woman who will work tirelessly to promote this awareness.

In conjunction with the conference, I participated in Advocacy Day. I went to Capitol Hill with about 70 other women and families – including Miss USA – to advocate for research dollars and to advocate for September to be officially recognized as Ovarian Cancer Awareness Month.  This was a totally new experience for me but it was very gratifying.  I met with the staff members of the Senators and Congresswoman from my state.  They were very receptive to my cause and listened to my story with concern.  I told them that mortality rates have not changed in the last 40 years for women dealing with ovarian cancer and that this cancer affects all ages including 3-year old girls, teenagers, women in their 20s, etc.  This is not an ‘older’ woman’s cancer.  The statistics are grim but hopefully, in some small way, I hope I’ve made a difference to raise awareness and get research dollars to find an early detection test for this insidious disease.

I felt like I had met a whole new branch on my family tree during this trip and I was so bummed when the conference ended because I really enjoyed meeting everyone and sharing our experiences.   Therefore, I jumped at the chance to attend a smaller conference in Boston this weekend that was organized by Ovations for the Cure.  Again, I went to the conference not knowing anyone. (As it turns out, I met up with a woman I’d met at the DC conference and there was also a woman from my church who attended.) It was a one-day event but it also provided information and I again had the opportunity to meet other survivors.  There was no cost for this event which was held at the Four Seasons in Boston.  The conference was very informative and we were treated to a fabulous lunch in Aujourd’hui. After all the poking, prodding, needles, surgeries, chemicals, etc., of the past year, it was so refreshing to have had this opportunity to participate in a local event and have lunch in a 5-star restaurant at no cost to me.

What I learned at both conferences is that there are a lot of women living with ovarian cancer.  I want to stress the word LIVING.  These women and their families have such positive attitudes and they do not let anyone rain on their parades.  They are intelligent women who ask intelligent questions and they will keep fighting to beat cancer.  They will find the best clinical trial or the ‘right’ oncologist to work with to get into remission. Some are fighting for their 2nd, 3rd, and 4th remissions.  They are the most open, considerate, and generous people that I have met.

Ironically, getting outside my comfort zone and meeting cancer survivors has provided a great deal of comfort to me.   My goal is to continue to help women and provide support just like the women who have helped me.  Yes, we are statistics but we don’t let statistics define us. We will beat the odds!

Advocacy Day 2012

Boston Lunch Menu

Miss USA Olivia Culpo and me at the OCNA conference

Attitude really IS everything

These days when someone approaches me to ask how I’m doing, I always hear, “Your attitude is amazing.”  This is great to hear but it makes me wonder what other people’s attitudes are.  I am an honest person and will admit to fatigue but I’m happy about life and I’m happy to be back at work.  Since my diagnosis, I have taken the approach that I’m going to beat this dreaded disease. I’ve never wavered from this.  I tend to keep negative people and negative energy away from me so perhaps I’m in my own little naive world.  Or perhaps I come from a reality-driven world thanks to the incredibly strong women in my family.  Let’s back up a bit….

All the women on both sides of my family have battled breast cancer (most have had to do it twice) and won.  I have seen this for all of my adult life and I honestly don’t remember a time growing up where one of my grandmother’s didn’t manage to squeeze her breast cancer (pun intended!) into every conversation. She also managed to plan her death from the first time she was diagnosed and often spoke of that as well.   She was a 2-time 26-year breast cancer survivor so she was cancer-free during these conversations and although the conversations were a bit morbid, she taught me that it’s o.k. for women to know what cancer is and her 26-year survival example showed me that it wasn’t a death sentence even though she planned for it on a regular basis.  Although it probably tired most folks out hearing her talk about her breast cancer and subsequent recoveries, what she did for me was empower me.  Her own mother likely passed away from “a woman’s cancer” although it wasn’t talked about way-back-when.  My grandmother changed that by going COMPLETELY the other way but I’m o.k. with that.  The door of communication was open.  WIDE OPEN.

Because of my grandmother’s breast cancer and her daughter’s as well (my aunt), several members of that side of the family have been tested for the BRCA mutation.  Several of them have it and by deduction, my grandmother had it as well although I don’t know that she was ever tested.  We are able to trace it back a few generations due to the extension of the same mutation in the family.   Again, armed with the knowledge that there’s a mutation in the family, I was not afraid to be tested as well.  Because of my grandmother, I knew that for myself it would be better to know as much as possible.   I was never afraid of the results because I knew deep in my gut that I had it, too.

I learned in 2006 that I carry a BRCA1 mutation so ever since then, I’ve been screened every six months for breast cancer (mammograms and breast MRIs).  After my last mammogram this past July, I was chatting with my breast oncology nurse practitioner and she looked me in the eye and said, “I can monitor your breasts.  What concerns me is your ovaries.  Oftentimes, ovarian cancer can start in the fallopian tubes and that just doesn’t show up on ultrasound.”  This was an “ah-ha” moment for me.  I got a referral from my family doctor to see the gynecologic oncologist and I met with her about the possibility of removing the ovaries and tubes as a preventative measure because of the BRCA1 mutation.  One week later I woke up from surgery and she told me that I have ovarian cancer (I had no symptoms).  Had I not known I had the genetics for this and been vigilant about the breast exams for the last several years, I would not have had the nurse telling me that my ovaries concerned her.   I would still not know that I have ovarian cancer and by the time I did find out, my prognosis might not be as good as it is now.  This all leads back to my grandmother’s continuous babble about her own breast cancer. (In the end, it was ovarian cancer that took her life.)  At least she opened that door of communication for me and I’ll always be grateful to her for it.

The other side of the family has breast cancer as well but it’s not likely that there’s a mutation and no one has been tested.  The women are strong souls and all have beaten breast cancer.   With all the cancer in my family, I have never once heard, “Poor me” or “Why me?”  It’s certainly possible that all the women have uttered these words at some point but if they did, it was behind closed doors and it didn’t last long.  All the women in my family are strong women with strong personalities (both a blessing and a curse, I’m sure) who aren’t going to let a cancer diagnosis mess up their plans for long.  Which brings me back to the original topic:  Attitude is everything.

Last week, I was texting with my BFSB (Best Friend Since Birth) and I mentioned to her about people continually mentioning my positive attitude.  She wrote back that some people are probably still curled up and having pity parties while I’m not doing that.  This was an eye-opener for me.  I wrote back, “The women in my family don’t have pity parties.  They have the suck-it-up-and-deal-with-it parties.”  Honestly, that is such a true statement.  This is what I have always seen and I know no other way to handle a cancer diagnosis.  I will always be grateful to all the women in my family for showing me grace and strength while dealing with whatever life throws at them.

I will stay positive because I’m not ready to die.  While it’s true that I have all my legal stuff in order, I do not dwell on it.  I take comfort in knowing that my wishes are on paper and that frees up my energy to fight this disease.  Remaining positive also gives me energy to fight.  If I don’t stay positive, I might as well give up.  In my family, that is just not an option.  If I have anything to say about it, it never will be an option.

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