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

ATTENTION MARKETING: Red Hot Romance

What a great way to end 2016 than to find out my gift bags I gave out at Romance Writer’s of America conference last July, made an impact. Kobo Writing Life posted about them as well as giving the symptoms of Ovarian Cancer a bit of a review.
Like Schoolhouse Rock told us all long ago, Knowledge is Power.
Empower yourself. Know the symptoms and get treatment if you suspect anything.

Kobo Writing Life

Patricia W. Fischer writes Red Hot romance.

It’s true. We found that out when we met her at the Romance Writers of America annual conference in San Diego this past summer.

That’s because Patricia was handing out this cute little wrapped package that included Original Red Hots Cinnamon Candy with a sticker that nicely ties in her fiction. This is the perfect little promotional item that is easily remembered.

img_00181Patricia W. Fischer‘s Red Hot Romance treat bag

Inside the package was the package of Red Hots candy, a bookmark with several of Patricia’s book covers on them as well as a QR code that links to her website and a card spreading the word about an important topic: Ovarian Cancer

img_00191The items from Patrica’s Red Hot package

We applaud Patricia not only for the fun little treat that reminds people about the type of books she writes, but also…

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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!!!

CancerRibbons

 

What To Do–Make Eye Contact

I’m super excited to introduce What to Do Wednesdays to all of you.

Many times when people are hit with that dreaded “C” word, the patient, family, friends alike have no idea what to do. How to help or even where to start.

We’re hoping that this weekly post will give many of you ideas on how you can help in the most productive ways. These will cover everything from social interaction, things to do, recipes, and general feedback so let’s begin…

2015 12 30 Dr Seuss Eyes
With the end of 2015 quickly approaching, so many of us are writing down (either literally or mentally) those over the top resolutions we’re going to accomplish in 2016. (i.e. Lose 75 pounds by Spring Break, find a new job that pays double, but has less responsibility, organize my entire house, eat only organic foods, clean up my potty mouth, etc).

They are all very well intentioned and obtainable, but what I’ve found is many of these resolutions are the ultimate goals. No one ever talks about the journey to get there or the small goals and accomplishments that happen along the way. It’s always the eyes on the prize–the big prize.

Problem is, if the only thing you focus on is the end result, the after picture as it were, then you’ll never get there. It takes work to achieve any goal and fighting cancer, whether you’re the patient or the caregiver, can feel like an everyday uphill battle.

As a person looking from the outside in, it can be extremely difficult to know what to do for those dealing with cancer.
Do I say something?
Do I do something?
What do I do?
Do I even know them well enough to get involved?
I don’t know them at all, so do I really need to do anything?

Here’s the deal. Just like those New Year’s Resolutions we’re all going to set, but many will have no actual plan to accomplish, it starts with small, purposeful steps. Understand, when helping or addressing those that are fighting cancer, Nothing you do has to be grandiose.

It can be the small gestures that can speak volumes. I’ve learned this as Seana has been so gracious to share her thoughts, feelings, and experiences with me about her journey with Ovarian Cancer.
There were things I hadn’t even considered or understood, which brings me to my first tip of what to do when someone you know/work with/see is affected by cancer.

Make eye contact

2015 12 30 Eye Strength

When people are diagnosed with cancer, people around them stop making eye contact with them.
People at work, people at their church, their friends, people they’ve talked to at the grocery store each week, other parents in the carpool—the list goes on and on.
You think, “oh not me. I wouldn’t avoid looking at someone who’s been diagnosed with this.”
Really? It’s hard. It’s hard to look at someone after that crappy news and act like things are peachy keen. It doesn’t mean it can’t be done because it’s done everyday, but understand it’s hard. It’s difficult for the person you’re looking at as well as yourself because the things you weren’t thinking about yesterday  (cancer) are on your mind today.
This especially holds true when the chemotherapy has caused hair loss and I mean every stinking strand of hair from the top of your head to the bottom of your feet. Eyelashes, eyebrows, arm hair, pubic hair, every kind of hair falls out and this can be visually confusing to those around the person going through it, but don’t turn away.
Do you best not to make that cringe face or with tear-filled eyes. Simply talk to this person, keep the lines of communication open.

If you’ve always known the person, keep talking to them, make eye contact, ask them the same questions you always ask:
Did you watch Grandfathered last night? Isn’t John Stamos gorgeous?
Have you seen that new Star Wars movie? Why don’t they have any Rey action figures at Target?
Did you get that last TPS report?
Did you want anything from Starbucks?

Many who are hit with the “C” word go through a lot of introspection, wonder what they did “wrong”, curse themselves for not eating enough salad–scratch that–not enough organic salad, for being mean to that kid who picked his nose in the third grade, I should have taken that multivitamin everyday, I shouldn’t have looked at those Playboy magazines…the list is endless. There are many, many things that race through their minds like that endless (and annoying) ticker tape that runs across the bottom on the screen of newscasts.

Those who’ve been hit in the face with this diagnosis have enough going on without people avoiding them. Without losing human contact with the people they see on a daily basis. The simple act of looking someone in the eyes can speak volumes.
2015 12 30 Eyes and Audrey

 

 

 

 

 

 

I hope this helps. Come back each week to read another tip on how to help and what to do for those who are dealing with cancer.

Thanks for reading.

 

5 Things You Should Know About Ovarian Cancer

**appeared on MomSmack.com**2014 9 7 JKade OC Awareness

By Seana Roubinek and Patricia W. Fischer

Ovarian Cancer (OC). In March, it trended like wildfire due to actress/director Angelina Jolie’s announcement that she’d recently undergone a preventive surgical procedure because of a pre-cancer scare. Because of this and her family history (mother and grandmother died from OC*) along with having the BRAC-1 gene, Jolie decided on the elective removal of her ovaries (oopherectomy) and fallopian tubes was the best course of action. Now her chances of ever being diagnosed with OC have plummeted by 80-90%**.
It’s certainly a proactive approach and one we applaud her for, but what about all those out there who know nothing about OC?
According to the Ovarian Cancer National Alliance, OC is the 11th most common cancer among women, it is the fifth leading cause of cancer-related death among women, and is the deadliest of gynecologic cancers.***
Because it’s a deep belly cancer, it is harder to detect, but it’s not impossible if you know what to look for.
Here are a few ways you can inform yourself about the symptoms of OC and what to do if you suspect something’s up.

(1) Get tested. If any woman in your family (sisters, mom, grandmothers, aunts, daughters) has been diagnosed with breast or ovarian cancer, get tested for the BRCA-1 or BRCA-2 genes. Women with these genes are more likely to develop breast cancer and ovarian cancer. Understand not all breast cancers are genetic so if you come up negative for either of these genes, that doesn’t mean you should avoid annual mammograms or monthly breast-self exams. Along with that, not all ovarian cancers are linked to breast cancers.
Many insurance providers will cover for genetic testing, especially with a strong family history of the disease.

(2) Give me a BEAT— Once called the silent killer because of its lack of obvious symptoms, OC can be hard to detect, but it’s far from quiet. Just remember 12-BEAT.
B-bloating
E-Eating, feeling full sooner than normal;
A-Abdominal Pain;
T-Trouble with urination or bowels (poop)
Additional concerns can include fatigue, indigestion, back pain, pain with intercourse, constipation and menstrual irregularities. Although these symptoms sound rather simple and we’ve all had them from time to time, the parameters of concern start when you have these symptoms more than 12 times during the course of one month. Also if the symptoms are new or unusual for you, contact your gynecologist.

(3) Who you calling old? If anyone tells you OC is an “old lady’s disease”, they’re full of it. Ovarian cancer has been diagnosed in pre-pubescent girls all the way to women in their nineties. The average age of new ovarian cancer patients is 63 years (not old as far as we’re concerned), that means half of the new cases are women younger than that. If you have concerning symptoms and a physician tells you you’re too young for OC, you might want to consider finding another doctor.

(4) Surgical Intervention—Like a woman having her breasts removed greatly decreases the chances of having breast cancer, undergoing removal of the ovaries and fallopian tubes (where many cases of OC begins) decreases a woman’s chance of developing OC down to 1-3%. Because the pelvic area can still include some of the epithelium, the same tissue that covers the ovaries, having OC is still possible, but a whole lot less likely with the ovaries and fallopian tubes removed.

(5) Rule of Three—If you suspect OC, there are a few tests/exams you can have to help rule it out. First, a physical/pelvic exam by your gynecologist. Be sure to explain symptoms and concerns.
Second, a trans-vaginal ultrasound can help visualize internal organs and possibly see something too small to palpate.
Third, a CA-125 blood test can also detect many, not all, forms of OC. Know there is much debate on whether this test is useful for women with an average risk of developing OC.

You have to be an advocate for your own health. If you have new or unusual symptoms that persist, keep a journal, write down what makes it worse or better so you have a specific list to hand to your health care practitioner.

For more questions or information about OC, be sure and talk to your doctor, nurse, or organizations such as the Ovarian Cancer National Alliance.

*http://en.wikipedia.org/wiki/Angelina_Jolie

**http://www.mayoclinic.org/tests-procedures/oophorectomy/in-depth/breast-cancer/ART-20047337

***http://www.ovariancancer.org/about/statistics/

Yep, that's us

Yep, that’s us. Seana (L) and Patricia (R) on Patricia’s great-grandmother’s couch in Austin, Texas, late 1960’s.

Bios:

Seana Roubinek is a 2-time ovarian cancer survivor.  Upon finishing chemotherapy the first time and there was no evidence of disease (NED), she was left with that “What do I now?” feeling.  She attended her first Ovarian Cancer National Alliance annual conference and discovered she had a passion for advocacy – both at the legislative level and through OCNA’s signature program Survivors Teaching Students (r) which involves speaking with 3rd year medical students and nursing students about the signs and symptoms of ovarian cancer.  After her 2nd bout with ovarian cancer, she decided to extend her advocacy efforts to include research and will be a representative of the ovarian cancer community at the American Association of Cancer Research annual conference in Philadelphia this April.

Patricia W. Fischer is an award-winning romance writer, health journalist, and former trauma nurse. She’s written for multiple publications including American Journal of Nursing, Nurse Week, iVillage, Hot Mom’s Club, Modern Mom, and Dallas Child. She’s a mom of four and has two contemporary romance series out.

Since 1967, Seana and Patricia have been best friends. They were introduced to each other when they were put in the same crib while their parents played bridge. They have future plans to be the two crazy cat ladies at the end of the street who yell at kids who walk across their lawns.

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

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