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.

 

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!!

ovarian-cancer-ribbon2.jpg

 

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

Yoga, Physical Therapy, and Waxing the Legs

This has been a week of “firsts,” a week of doing things only for me, and a week of pain (some good and one not so good).  Read on…

A good friend of mine and I were catching up over breakfast the other day and she invited me to one of her yoga classes that she attends.  I am always skeptical of yoga classes because I’m as flexible as a two-by-four and  I was standing in the wrong line when God handed out coordination.  In addition, I have literally been pushed farther than I can go in a previous class that I attended years ago and I have been leery ever since.  She assured me this was a gentle class and it would be good for me.  I agreed to go and I have to say, it was a wonderful experience.  I don’t know a lot of the moves but I tried to do my best. At one point, I was so proud of myself when we had to stand on one leg like a flamingo and twist our arms around each other because I did not fall.  My supporting leg shook like crazy but I stayed upright.  For me, this was empowering because my balance has been thrown for a loop after chemo and neuropathy.  I woke up with sore muscles the next day but it was a ‘good’ pain.  I had done something beneficial to both my physical and mental health and I plan on going again next week.

I also started physical therapy today to hopefully deal with the balance issues that neuropathy has exacerbated.  Now keep in mind that I am not a coordinated person and I can trip over a piece of lint on a good day.  Throw in the neuropathy and the whole process involved in recovering from surgeries and chemo and I am a sight to see when I’m on the move.  I was ‘evaluated’ today and  I now have finger exercises, stability ball exercises, and balance exercises to work on.  I need to strengthen my abs (by-product of surgery and plain old fatigue from chemo) and my ankles.   Apparently my ankles have been overcompensating due to the weak core muscles and the neuropathy in the toes.  I have to retrain them to do what they are supposed to do.   This is what my physical therapist told me today.  “Seriously?” I asked.  She said, “seriously.”  “OK, so show me what to do.”  She did the exercises and then she had me do them.  Although these seem relatively easy when reading about them or watching someone else do them, some are quite challenging to me which is a bitter pill to swallow. Because my ankles have supported me through five marathons,  in my mind I felt that I shouldn’t have to start with the ‘baby’ stuff but goodness gracious, the ‘baby’ stuff can be difficult. And painful.   Again, this is a ‘good’ pain.  I plan on seeing progress each week and feeling more confident in my balance.

Lastly, my hair has really started to grow back.  I never lost all of the hair on my head but I lost a good chunk of it.  It has since started to fill in so now I don’t look like a person with really bad hair plugs anymore (the ‘do does look like something out of Star Trek but I’m ok with that).  Along with the growth on my head, my leg hair has also grown back (I never lost the arm hair so there’s no rhyme or reason to this hair loss thing).  Both the hair on the head and the leg hair are very soft.  Last night, I decided to try waxing the legs rather than shaving.  Having never done this before, I dutifully read the directions, warmed the wax, rolled the wax on, pressed the paper down, and let ‘er rip.  Um, no thank you.  What a miserable experience THAT was.  I shall hang onto my razor and contribute the blades to my local landfill as needed.

Thank You for Donating

I have always been the person who donates her time, efforts, etc., to causes like helping at the soup kitchen, cooking for functions at church, volunteering at PTA functions, etc. I like staying behind the scenes and quietly helping because that’s where I’m comfortable.  I have also anonymously helped people in another way — I am a 4+-gallon blood donor.

I am nearing the end of my scheduled chemo treatments so my body has taken some hits with fatigue, low appetite, low magnesium, etc.  My blood is tested every week a couple of days before my chemo treatments due to the clinical trial I am in.  This past week, my red blood cells were down for the first time ever.  I was retested on the day of chemo and they were even lower. My option?  A blood transfusion.  This rocked me on my heels.  I have always been the donor.  I’m the one who helps other people.  Suddenly I found myself on the other side as the person needing help.

Throughout this process of dealing with cancer, I have learned to accept help when it’s offered and to ask for it when it’s needed.  My pride has taken a back seat and I am grateful to everyone who has helped me in any way whether it’s shuttling my kiddo around, cooking meals for us, checking on us from time-to-time, etc.  Therefore, it’s a bit odd that I went back to my old ways because I was initially resistant to the idea of a transfusion — I wanted my body to be strong enough to “bounce back.”  Reality, however, had a different plan.  After discussing the pros and cons of the blood transfusion with my sweetie and folks from my medical team, I opted to have the transfusion.  I will say it was a very humbling experience for me.  I have never minded taking time out of my day to donate blood for others.  As I watched the nurse hook me up to receive my transfusion, I said a silent “thank you” to the person who took time out of his/her day to donate so that I could get my red blood cell count up.  After my transfusion, I felt better and less fatigued.  I am so grateful to my anonymous donor.

I have three chemo treatments left and although chemo is cumulative, my plan is to sail through them without any further issues.  However, if I need another blood transfusion, I am hopeful that it will be there if I need it.  My donation days are likely over.  Blood supply is critically low right now.  Donations are low this time of year so if you are able to donate, please do it.  Do not let a fear of needles or an excuse of being too busy stop you.  A momentary needle stick (it doesn’t hurt for more than a few seconds) and 15-20 minutes lying down will help up to three people.   You will feel so good afterwards.

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.

 

 

Previous Older Entries

%d bloggers like this: