Dear Friend with Cancer

Dear Friend with Cancer,

Cancer sucks.  Period.  We both have it and we both have recurred twice.  There will likely be no long remissions for either one of us but one thing I know for sure:  we can LIVE with cancer.  That’s right.  We can live with it because it can be treated like other chronic illnesses such as diabetes.

Sure, chemo sucks, but it can work to prolong our lives.  There may also be clinical trials that might help.  However, nothing will work if we are not ‘plugged in’ and are not being an active participant in our medical journey.  I am a firm believer that attitude is at least half the battle if not more.  Without a positive attitude most of the time, our life becomes very short.  (It’s o.k. to have sad days as long as we don’t unpack and stay there.)

Unfortunately, with this latest recurrence, it looks like you have given up hope and there’s not a single thing I can do about it.   I am not scolding you in any way, I assure you.  I am merely stating my observation from the perspective of someone who cares about you.

To all the ladies out there dealing with ovarian cancer, support is available either in person or via phone, email, or the internet:

SHARE – this organization has a hotline that you can call at any time and speak with a trained fellow survivor.

Woman to Woman – this organization is a partnership between QVC  and the Ovarian Cancer Research Fund Alliance.  It is in several hospitals around the country and also provides support to women diagnosed with ovarian cancer.

Ovarian Cancer Resources – these organizations are partner members with the Ovarian Cancer Research Fund Alliance.  Many have support groups available.

In my state, we are fortunate to have the Patrick Dempsey Center for Cancer Hope and Healing.  This organization provides support, exercise, nutrition, crafts, etc., to cancer patients, their families, and their caregivers FOR FREE.  It’s an amazing organization that I drive two hours each way so that I can go there for my own support as well as for my son.

My sweet friend, so many people love you and care about you.   I have never felt so helpless as I do right now.  There is support available and I hope you will reach out. No one gets through cancer alone.

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It’s OK to Advocate for Yourself

Throughout the last 5+ years, I have learned a lot about advocating for the ovarian cancer community: I have been to Capitol Hill several times to ask for research for dollars for better treatments and an early detection test, I have participated in the American Association for Cancer Research Survivor Scientist Program, I have been a consumer reviewer for potential innovative research, and I am a presenter with Survivors Teaching Students® where we speak with 3rd-year medical students, physicians’ assistant students, and nursing students about our stories in the hopes that they will refer patients who present with symptoms to a gynecologic oncologist so that if ovarian cancer is present, it will be diagnosed at an earlier stage.

In these past few years, I have also learned to advocate for myself especially when it comes to healthcare.  For example:

  • During my frontline chemotherapy treatments, the infusion center where I was initially sent was being remodeled.  The temporary setup was not ideal:  patients were packed in like sardines, there was absolutely no privacy in conversations because the arms of the most uncomfortable chairs were touching the next patient’s chair, and my first treatment included the nurse seating me and then going to lunch for an hour so no one checked on me or explained what was happening. When I finally received chemotherapy, I felt like I was not a person at all  – I was merely “a port access” and no one looked me in the eyes to tell me what was happening or how long it would last.  I was already terrified to receive chemotherapy and by the time I left, I was so stressed about this experience that when I saw my oncologist the following week, I told her about my experience and I asked if there was another location for chemotherapy where I would be treated a person first and patient second.  She was wonderfully supportive and found me another place to receive chemotherapy for the duration of my treatments.
    • The “takeaway” is:  Express your concerns and ask for what you want/need. Do not suffer in silence.
  • I am a supporter of clinical trials; however, they are often an administrative nightmare for the patient who is already stressed but then must take on the role of communicating between the various parties involved.  If your oncologist is also facilitating the clinical trial, things tend to run much smoother.  I have experienced the smoother option as well as the administrative nightmare but patients still need to advocate for themselves if they really want in a trial.  Be the squeaky wheel because time is often a stringent guideline to get in to one.  At the same time, if the trial is not meeting the patient’s needs, it is o.k. to voluntarily leave a trial.  I did this a few years ago when I was in a maintenance trial in Boston. There was ZERO communication within that facility, my calendar for trial tests was wrong (they wanted to do tests that didn’t need to be done because it was on the calendar in error) and I pointed it out every week, then every month, and no one took responsibility.  I had to physically carry information from one desk to another in the same office.  I also did not receive the travel reimbursement that the clinical trial covered although I asked about it every time I went. After 5 months, I told the Boston doctor that I was going back home for follow-up care. I told her that this was a “world-class” hospital but that does not mean that treatment and care is any less stressful if the patient has to do other people’s work.   She agreed that there were issues – because I had been bringing them up at every visit – but did not seem concerned enough to try and fix it.
    • The “takeaway” is: Just because it’s a world-class hospital and has a great reputation does not mean that it will do everything it can to ease your stress as a cancer patient.  Tell them what you want/need and if they won’t fix it, it’s o.k. to go elsewhere.  (I did eventually receive my travel reimbursements but it took a very long time and I had to keep asking every week.)
  • If you have scans or tests done, do not leave it up to the doctor’s office to call you.  I know too many people who “fell through the cracks” and did not receive the call-back for mammograms, etc.  Call the office.
    • The “takeaway” is:  Be the squeaky wheel.  It’s your health that is at stake.  Keep calling until you get answers.
  • Second opinions are totally o.k. to seek out.  I have a terrific gynecologic oncologist in my home state who facilitates clinical trials.  However, there was one that I really wanted to get into (I’ve been in 4 different trials thus far) that was in Boston.  I went to Boston last fall and it was determined that the trial may not be my best option so we pursued traditional chemotherapy in the hopes of shrinking the rogue tumor and then perhaps I could get into a different trial.  The tumor stopped responding to chemotherapy and the Boston physicians recommended surgery with a particular surgeon.  I was not in favor of this ( I had already had two other tumor debulking surgeries at this point and really did not want another surgery) but I had a consultation with that surgeon who was terrific.  However, he was a GI surgeon and not a gynecologic oncologist. I am very knowledgeable about how my cancer grows and oftentimes there are small tumors in my pelvic region that do not show up on scans.   Therefore, I wanted a gynecologic oncologist in the OR just in case he/she determined that the scheduled surgical procedure may not be the best option once he/she looked around after the initial cut.  My Boston physician would not be there and the GI surgeon did not think it was necessary.  My “gut” feeling was that this was not the way to go.  Again, even though Boston has world-class hospitals with world-class physicians, it was not the best option for me.  I went back home and met with my gynecologic oncologist as well as a surgical oncologist that she recommended.  I felt so much better about their approach and scheduled the surgery with both of them in the OR with the gynecologic oncologist “driving” the surgery.   In the interest of full disclosure, the surgery ended up being the same that Boston would have done. However, I would not have that piece of mind of a gynecologic oncologist looking around at the beginning of the surgery to see if there were any more tumors lurking about or to change plans if need be.
    • The “takeaway” is:  Be knowledgeable about your illness.  Listen to your gut. It’s o.k. to get second opinions. Do not worry about hurting anyone’s feelings because it’s YOUR body and YOUR life.

Whether it’s cancer or another chronic illness, be knowledgeable and ask for what you need.  If you are not getting what you need or are not getting answers from your current physician, find another one who believes in patient-centered care.  That is where you will find the best care for YOU.

Self Advocacy PostIt

What the Dempsey Center and Dempsey Challenge mean to me (Hint: They are tops on my list!)

When it comes to ovarian cancer, statistics show that only 40-45% of women will survive five years after diagnosis because it is usually diagnosed at a late stage.  Those statistics suck.  Period.  My grandmother passed within months of being diagnosed.  I have a cousin who passed after battling for 3 1/2 years.  I am losing friends every week to this insidious disease. It is a sad reality of ovarian cancer – we need an early detection test and we need better treatments.  In the meantime, how does a woman navigate through this journey with support and hope?

In one month, it will be five years since I was diagnosed with ovarian cancer.  Today, I am still battling it for the 3rd time (almost a year this time around).  If it were not for the support of other survivors, many of whom I have not met in person, I would not have made it this far.  They provide information, support, what-to-do/what-not-to-do advice, and they are always available at any time of the day or night thanks to the internet.

Throughout this time, I have also been blessed to have The Patrick Dempsey Center for Cancer Hope & Healing  available to me as well as to my family as a wonderful resource for support, exercise, cooking, crafting, etc., and all of this is provided for FREE because, well, cancer is just STUPID EXPENSIVE.  Most of the funding to provide these services comes through the annual Dempsey Challenge  where 100% of the funds raised go directly to the Center.  It’s a lengthy drive for me but it is very much worth it and I will keep going because of everything that the Center offers.

With any luck, I will hit that five-year mark next month and I want to celebrate BIG TIME.  I am not planning on any trips or large purchases (other than a bit of remodeling at home). This will also be my 5th year to participate in the Dempsey Challenge on October 1st-2nd and I want to raise a lot of money for this place.  It has been good to me and it is has been an amazing resource for my son.

I want to give back to say thank you, thank you, thank you!  I have set a big goal and I think I can do it.  No amount is too small to make a difference.  For every $25 donated, I will donate a crocheted chemo cap to the Dempsey Center that will be available for cancer patients.  All donations are tax-deductible and you can donate by going to my personal fundraising page.

All cancers matter and no one gets through cancer alone.  Thank you for your support!!!

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What Will Your Dash Be?

No one knows how long we have but we should make the best of the time we do have. Life cannot be taken for granted. What will your dash be? You know – the dash between your birth date and the date of your death. It’s been a while since I’ve written a post and this is because my cancer came back. I again went through chemo and am now in a clinical trial with an oral medication that will hopefully prevent recurrence. While dealing with the “feeling like I’ve been hit in the gut again” emotions that go along with being told that the cancer was back, I took a good hard look at what my purpose must be to keep going through this. Some people say that I’m an inspiration, some say that I’m tough, and some people just don’t talk to me because they don’t know what to say.

Growing up, I was quite introverted and preferred to mingle with the wallpaper rather than talk to people. As I became an adult, I found myself working in jobs that required conversation with people and that helped break me out of my shell. After being diagnosed with cancer the first time, I truly didn’t care about being shy any longer. If nothing else – besides being a mom which is my greatest accomplishment – I think that one thing I have done is to try and raise awareness about ovarian cancer to anyone who will listen. My passion is advocacy. I have been to Capitol Hill four times in the last 2 1/2 years to talk to legislators. I have sent emails to legislators. I have spoken to nursing students as a part of the Survivors Teaching Students ® program to help change the medical profession’s outdated views on ovarian cancer. I have been interviewed by the local news. I next want to get involved in research advocacy because honestly, we need an early detection test and we need better treatment options.

What motivates me is that I don’t ever want any other woman to go through ovarian cancer. Sadly, many women do. My cancer is caused by a genetic mutation which runs rampant through one side of my family. I have been blessed by the kindness of strangers – thanks to the internet – to find support, knowledge, and strength to get through this insidious disease. Most women in my family have had breast cancer or ovarian cancer or both. One of those was a distant cousin that I met through email because we both battled ovarian cancer – her first, then me. Then she recurred, then I did. We exchanged emails about our treatments and surgeries and hopes and fears. She fought for 3 1/2 years before the cancer took her life a few days ago at the age of 40. She was so young but I have no doubt that her dash tells a great story about her life which included offering me support. I know how much she loved her daughter and that she never wanted her to face cancer. And now that my cousin is gone, I will continue to advocate so that her daughter may never have to deal with ovarian cancer in her lifetime. I don’t know how long I have but I want my dash to include that I did all that I could to help the next generation of women by raising awareness about the need for research for an early detection test and patient-targeted therapies to stop cancer in its tracks.  What will your dash be?

The Dash by Linda Ellis

The Dash by Linda Ellis

Angelsong is an amazing experience

Going through cancer and chemotherapy leaves most people with some battle scars – both those you can see and those you cannot – and there is often a heightened sense of anxiety at times.  During my own journey,  I have explored all sorts of alternative therapies including diet, herbal supplements, yoga, meditation, and music.  All of them have been very positive experiences for me.  I am open to just about any alternative idea that does not involve hallucinations or drugs.  I also believe that people cross our paths for a reason.  I have met many wonderful people in the last couple of years and one of them is Amy Robbins-Wilson.  

She literally lights up a room when she walks in and has the ability to draw people towards her.  As I’ve gotten to know her, I’ve learned that she possesses two Master’s degrees, she is a Reiki Master and Awakener, and she has the voice of an angel.  One of the more fascinating aspects about her is that she performs Angelsong Sessions for individuals and Angelsong Circles for a group of people. Ah, and what is Angelsong, you ask?  According to Amy’s website (link is below), Angelsong is “a form of energetic singing that is a combination of live a capella-inspired song and healing techniques. Amy opens transformational space through music” to assist people experiencing stress, grief, loss, or those looking for a sense of balance.  She sings over the person/people and smooths out energetic auras.   No, this is not based on science as we know it and it may sound wacky to some.  However, I have been able to experience an Angelsong session firsthand it was unlike anything I have ever experienced.  

The session began when Amy sat me down in a chair that faced a window overlooking the beautiful outdoors.  I closed my eyes and she started singing and moving about the space.  I have no idea how long I sat there because I got lost in her voice and my own meditation.   Afterwards, I felt such a sense of healing and peace.  The best analogy I can draw is that it is a spiritual yoga.  When I do yoga, I am so focused on what I’m doing and on my own breath that I cannot think of anything else and when the class is over, I feel a sense of peace.  This is the same feeling I had during and after the Angelsong session.  No anxiety, no jitters, and surprisingly, the nearly constant pain in my chest where my port had been was gone.  I have a back injury that has gotten worse over the years.  After the Angelsong session was over, my back pain was nearly gone, too.  It’s been a few days and neither pain has not come back.  I still feel centered, peaceful, and feel that I have found another method of healing.   I know, I know….some may say it’s a placebo effect or this can’t really happen because it makes no sense in the scientific world. Whatever it is, IT IS REAL.  If you get the chance, I highly recommend trying one of these sessions.  It is perfect for new moms, cancer patients, those in hospice, or anyone who needs some healing and balance.  It is one of the best therapies I have experienced and if you keep an open mind, it can help you, too.   Check her out at Amy’s website and if you’d like to hear her angelic voice, check out  Amy sings “I Remember You.”

 

 

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Got de-ported – Now what?

I was de-ported last week.  Not in a Justin-Bieber-kind-of-way but in a medical-sort-of-way.  I had my one remaining IV mediport removed.   When I was originally diagnosed with ovarian cancer, I qualified for a clinical trial which required two ports – one was IP (intra peritoneal) and one was the traditional IV power port in the chest.  Due to clinical trial protocol, I had the IP port out as soon as I finished chemo.  My trial included Avastin treatments which went on for several more months so I kept the IV port.  Once Avastin treatments were over, I thought I’d have the IV port taken out right away.  However, after thinking about it, I opted to keep it.  I felt that it was my umbrella, so-to-speak, so that I could keep the “rain” away which means if I kept the port, maybe I’d never need again.  Ovarian cancer has a high recurrence rate and I was late-stage when I was originally diagnosed so it’s very possible that it will come back.  

However, I have decided that 2014 is the year for change.  Since I put so much effort into staring down cancer, after treatment was completed, I started getting involved in advocacy through the Ovarian Cancer National Alliance (see my previous post with former Miss USA Olivia Culpo).  Now that my port is out, I feel even more passion for continuing the advocacy efforts to educate women, medical professionals, Capitol Hill, and anyone else who will listen about the signs, symptoms, and unquestionable need for an early detection test for ovarian cancer.

This is why my efforts will now be with the GrassTops Program through the Ovarian Cancer National Alliance. I have enjoyed being a part of the Ovarian Cancer National Alliance’s annual conference for the last two years.  This new opportunity with GrassTops will allow me to continue to speak for young girls, teenagers, and women of all ages who have lost their lives to this disease (including my grandmother) as well as to speak for those who are still in the fight and those who have not yet been diagnosed.  I am committing the next two years to help the Alliance raise awareness and research dollars.

Since this is my year for change, I have also been blessed with a charity fundraising slot in the 2014 Boston Marathon (as a former resident, Boston is my adopted hometown).  Boston is a HUGE marathon and has always been a goal of mine.  I completed five marathons prior to my cancer diagnosis.  The Boston Marathon will my first marathon post-cancer and post-chemo.  My body is built for endurance, not speed, so I will never be a time qualifier yet I was truly lucky to gain a charity slot for South Boston Neighborhood House a.k.a. The Ollie.

I feel strong – both physically and emotionally.  I cannot dwell on the probability of recurrence.  I need to enjoy TODAY.  I will not let cancer sap any more of my happiness nor will I be saddled with “what-ifs.”   It’s time to move forward and put cancer in the rear-view mirror. One day recently I awoke and said, “I’m all done with this mediport.”  So out it came last week and I have no regrets.  I am so excited to be healthy enough to be training for another marathon. Boston will be a homecoming of sorts for me and it will be a dream come true.

This is the year for change – the Boston Marathon is a life-long dream and I will realize that dream very soon. If you are able to help me reach my fundraising goal for South Boston Neighborhood House, please do so through this link.. Even $10 will go a long way to help this fantastic organization that does so much to support the South Boston community.  Thank you in advance!!!  I also dream of an early detection test for ovarian cancer.  I will continue the fight for all women. I will do all of this without any more mediports in me.  So long, cancer!!

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My Favorite Charitable Event

So it’s definitely been a while since I’ve posted anything and I apologize for the long wait. I have been busy with work and raising my son and trying my darndest to stay in remission (so far, so good!).  Last weekend, I had the opportunity to participate in The Dempsey Challenge.  This was my second year doing so.  This event runs all weekend with the running events being held on Saturday and the biking events are held on Sunday.  In addition, there’s a ton of activities to participate in leading up to the big weekend which are all totally optional but they really add to the spirit of this very sincere and generous cause.  Let me backtrack just a bit…

When I was diagnosed with ovarian cancer two years ago, I did not know any survivors of this insidious disease.  My own grandmother had passed away from it nearly 14 years prior to my diagnosis.  It’s known as The Silent Killer for a reason.  I didn’t want this cancer to take my life and prevent me from raising my son and seeing him graduate high school and college and see the man that he will become.

I was careful in my searches on the internet when I was first diagnosed because of all the terrible stuff out there about this cancer. I tried to learn about the disease but didn’t go too deep since I didn’t want to scare myself.  I realize that’s naive but that’s what worked for me at the time.  What I really wanted was to know someone who was a survivor and thus began my search on the internet for any survivors in my area.  The only one that I was able to find was Amanda Dempsey, mother of three.  Not only was she a survivor, she had battled several times and was still around.  So this is what I held onto – a woman that I had never met but she lives in my area.  I “knew” someone who had battled ovarian cancer and won so this added some fuel to my fight.

Since there was no cancer-specific support group in my area, I turned to the internet and was blessed to find some very giving women who offered loads of support in a safe and confidential setting even though they’d never met me.  With their generous sharing of information, I was able to gain enormous knowledge and emotional support from survivors who told me that I was more than a statistic.  Between them and the support of my friends, family, and co-workers, I was able to navigate through the surgeries, chemo, and all those lousy side effects.  During this time, I had heard that there was a cancer support center that was being planned in the central part of the state and it was inspired by the same woman who inspired me – Amanda Dempsey.  This was good news to me since it sounded like it would be a place that was very much needed but didn’t exist yet.  I wondered if it would be too good to be true but I kept my hopes up.

In the meantime, thanks to these generous women on the internet, I learned of the annual Ovarian Cancer National Alliance that is held each July in Washington, DC.  In July 2012, I went to DC and was fortunate to meet some of these wonderful ladies in person.  It truly gave me a passion to help others and once I came home,  I decided that I wanted to participate in a fundraiser for this new cancer center that I had heard about. The fundraiser is called the The Dempsey Challenge and all of the money raised goes to the Patrick Dempsey Center for Cancer Hope and Healing.   I have had the pleasure of going to the Center which offers support, gentle exercise, massage, information, and a lot of hugs for all cancer patients and their families and caregivers regardless of the type of cancer one has.  The bonus:  the Center does not charge anyone for any of the services they offer.  It is truly a safe and welcoming place to go to heal.  Having cancer leaves us shunned at times because those not familiar with the disease just either stay away or don’t know what to say to a person who has no hair and a swollen chemo face.  This is NOT the case at the Center.  Everyone is accepted and valued and they provide so much support and information.

The Dempsey Challenge is a truly wonderful event to participate in.  There’s no competition (the events are not officially timed) and the generous support of all the participants and volunteers is top-notch. Survivors are recognized and sincerely welcomed and celebrated (just like they are at the Center).  Not one cent that is raised by the participants goes towards putting on the event.  They have a lot of sponsors who generously cover all of the costs for the weekend which is a lot of fun for families, survivors, and caregivers.  It is by far one of the best organized events I have ever participated in.  This is the second year that I have participated and it’s something that I plan on being a part of every year.

It is also at this fundraiser that I have had the pleasure of seeing the beautiful Amanda Dempsey, ovarian cancer survivor and mother of 3. She’s such a fighter and I doubt she knows how many people she inspires.  She inspires me each and every day.

To learn more about the Challenge and to donate, please go to:  The Patrick Dempsey Center for Cancer Hope & Healing

To learn more about this wonderful place that was inspired by Amanda, please check out this video:

 

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