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.

 

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

Ch-ch-ch-changes

I have a previous post about being a control freak.  Those days are long-gone and that’s actually a very good thing.  As I near the end of my fourth chemo cycle (I am scheduled for 6), here are some changes that I have noticed since starting chemo back in November:

* Shower time – I inherited my dad’s preference for long showers.  However, thanks to the Taxol, I have about only about 1/4 -1/3 of my hair on my head and I do not have to shave the pits or legs. (I still have eyebrows and some eyelashes so Taxol has been rather random with hair loss for me.)   Therefore, I  don’t have my long hair to shampoo, condition or deep-condition, and no need to shave.  So my showers have gone from a good 15+ minutes to….well….since I don’t have anything to do in the shower other than soap up and rinse, I can be done in 60 seconds.  I try and stretch it out to a good 5 minutes if for no other reason than to allow the warm water to finally flow through the shower head.

* Stares from strangers – oh, the stares!  I’m so over them.  Seriously, a scarf on my head does not indicate that my cancer is contagious.  This issue is about those people and not about me.  I hold my head high, stare back with a gentle smile, and they look away.  Those people have to be able to sleep at night with how they live and treat people.   Enough said about this topic.

* Taste buds – what taste buds????   Most food tastes like cardboard or paste (flour-and-water paste – not the industrial paste/glue that comes in a plastic bottle).  Oh, well.  I look for foods with texture right now like nuts, fresh fruit, and some super-high acid like lemon juice or vinegar so that there is SOMETHING to motivate the taste buds.  I look forward to being able to taste food again especially since I am a trained chef and baker.

* Energy – chemo has definitely taken a toll on my energy.  I am told this is normal but it is frustrating.  I do try and get some exercise on a regular basis and lift super-light weights so that I do not overdo it.  I also try not to get down on myself because I cannot do what I would like to do.  It is o.k.  that I cannot do as much as I want to and my doctor told me this.  She also said that I will bounce back quicker once chemo is over because I am exercising.  This information rings happy bells for me so I keep moving even though I am often lapped by incredible women and men who are twice my age. I look forward to being that active at their age.

* Sleep – what sleep?  O.K., a slight exaggeration here but my ability to sleep is all over the place.  Sometimes I can sleep straight through the night, other times I wake up a lot, and sometimes I cannot sleep at all.  I am working on this and am hopeful this will improve very, very soon.

* Family and Friends – a slight tease here – I am adding this because this is the one area that HAS NOT CHANGED.   My family, friends, co-workers, and managers have been steadfast in their support and I cannot thank them enough.  I am so blessed to have them in my life.

All in all, change is actually good.  I cannot control any of these things – nor do I want to – because it means that the chemo is working.  That is the goal. As far as I am concerned, I am pronouncing myself cured.  The remaining treatments are just insurance.   This is how I roll.  It’s not how everyone rolls but it works for me.  Some may call me naive, some may think I have bravato or conceit, and some may think I should be realistic and look at statistics.  What I look at is ME – my treatments, my lab work, and my attitude.  I don’t care about all that other stuff.  My goal from the beginning was to beat this.  I will not lose sight of that goal.

 

 

Angels Among Us

I have always believed in angels and have always felt that I have a team of guardian angels watching over me in the spiritual world.  In the last several weeks, I have seen the faces of angels who walk among us.  One angel came to visit me and she was armed with several meals that she had prepared for my family along with an enormous gift bag from my flock of angels (a.k.a. co-workers) at work.  Another angel is my aunt who is also a two-time cancer survivor.  She has been a tremendous source of support to me with tips on dealing with the upcoming chemo, hair loss, and navigating the cancer diagnosis and “year’s worth of stuff to deal with.” Another angel is my best friend since birth who has answered my many medical questions (she’s an RN) and been a wonderful source of emotional support for me.  There is an angel in a fellow mom who has offered to help transport my kiddo during basketball season.  Many more angels — including more members of my family — have offered me support, transportation, meals, etc.

I had breakfast with a wonderful friend earlier this week.  She and I met through church and have developed a warm friendship.  She also happens to be a two-time cancer survivor who has the same oncologist that I have.  I have had lots and lots of support around me in recent weeks and I’m grateful for all of it and I pray that it continues.  However, there is nothing like being able to chat with a fellow cancer survivor who knows “all the parties involved” – the doctors, nurses, medical facilities, medical tests, the lengthy drive, etc.  We discussed the differences in our cancers and our incisions.   We discussed how our families have been affected and we discussed various bumps in the road (both literally and figuratively).  We discussed getting everything in place from a legal standpoint. I was able to lament about the last bath I was able to take in my garden tub with water jets.  (It was the day before my first surgery.)  I have not been able to take a long hot bath since then due to my incisions and she understands.

As I think about the “minor” surgery that is scheduled for tomorrow to put in the IV and IP ports for chemo, I am so grateful to be able to share my experiences with this wonderful friend.  Every surgery carries risks – no matter how “minor” it is — and she understands.  She has offered to do laundry for me.  She gave me tips on music to listen to in order to keep me in “fight mode.”  She has given me tips on how to keep my head warm and what fabrics don’t irritate the scalp.  She has offered to take me to chemo treatments and entertain me.  I was also able to ask her to be a “Standby Mom” to check on my kiddo if needed which she quickly agreed to without any hesitation.  She is another angel on my team who walks among us.

There are angels everywhere.  They show themselves in very caring ways.  Who knows?  You might even be an angel to someone who appreciates you.

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