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.

 

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

Cancer vs. Control Freaks

On Thursday, I went back to the hospital to receive my first chemo treatment. Since I had only been released on Tuesday after my collapsed lung ordeal, I felt like I’d barely left. My sweetheart and I were warmly welcomed by the nurses and set up in a very nice private room. This was the first of my “long” days (there will be six in all) where I received a couple of different chemo drugs as well as “symptom” meds to prevent the onset of symptoms. I settled in with my iPod and my book and my sweetie did the same.

Since I had nothing to compare the experience to, I didn’t know what to expect. My nurse was wonderful and explained every detail. All in all, it was a good day. It was also humbling because I know that much of the next few months is out of my control. What I have control over is:
* taking my medications (both traditional and complementary – my doc is aware of all that I’m taking)
* having “conversations” with my body to tell the good cells to fight off the bad cells
* exercising gently to keep my energy up
* eating as healthy as possible
* getting enough rest
* minimizing stress levels by spending time with my family, reading, cross-stitching, and enjoying other hobbies

Although it looks like there’s a lot that I have control over, ultimately it is up to my body to accept the medications to fight the cancer. In theory, this should stave off symptoms and side effects of the medications and ultimately beat the disease. The “control freak” in me needs to take a backseat. All I can do is support my body in its fight.

Embracing the unexpected

I came to the hospital for “routine” outpatient surgery last Thursday to place two port-a-caths so that chemotherapy can begin next week. One of the risks of placing an IV port-a-cath is the possibility of getting an air bubble around a lung. This happened to me so I was kept overnight for observation.

I woke up Friday morning and although I could feel a difference in breathing, I had very little pain. My oxygen levels were good so I grabbed my IV pole and strolled the hallways. After my morning x-ray, I learned that I had a collapsed lung. My outpatient surgery became a weekend stay instead.

As I sit in my hospital bed during this unexpected stay, I look out my window and I can see the snow-capped peak of Mt. Washington in the distance. I never expected to be in the cancer wing of a hospital and be able to see another state. Literally. This beautiful view is one of many “unexpecteds” that I have embraced this weekend.

Mt. Washington is way out there - smack-dab in the middle of the photo

Although my stay was not planned, I have made the best of it. My doctors and nurses were amazed that I was walking around with good oxygen levels and a collapsed lung. They continue to be pleasantly surprised that I have been wandering the hallways while carrying a portable lung vacuum with me.

I was supposed to have the chest tube removed today but since that didn’t happen, I couldn’t take the shower that I had been looking forward to for the last couple of days. I managed to wash my hair in the bathroom sink with the help of my sweetheart. He washed and rinsed for me and then he helped me shave and get cleaned up. He brought me pajamas from home as well as a Starbucks iced coffee drink which had been previously approved by my oncologist. My son brought his iPad for me to borrow which is what I am using to write this post.

To me, this is life and this is what I do — I “go with the flow” because lots of things in life are unexpected. This includes my cancer diagnosis. If I embrace the unexpectedness rather than fight it, I am able to appreciate some things that other people may take for granted — clean hair, a clean body, comfy pajamas, a decadent iced coffee drink, and seeing another beautiful state from my hospital window.

Sunset outside my hospital window

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.

My life lately is a lot like Charlie Brown vs. the football

As I watched It’s the Great Pumpkin, Charlie Brown last night, I began to see the similarities between the show and myself as I navigate the road to recovering from cancer. I haven’t started chemo yet so right now I am at the mercy of being scheduled for “this” surgery or “that” test.  On top of that, I often need to drive quite a distance to accommodate these procedures.  Just when I think I’m finally making progress, I get hit with another surprise.  Here are some examples of my journey so far:

1.)  I scheduled a laparoscopic surgery to prevent cancer and instead I learned that I have ovarian cancer.

2.)  After several days of recovering at home after having a radical hysterectomy, I woke up one morning – literally – to a weeping seroma.  Although this is common, I now had an open wound to treat.  (In all actuality, the weeping speeds up the healing process but I didn’t know this when I first woke up that Saturday morning with a damp nightshirt.)

3.)  I had a CAT scan last week where I was originally informed that I would need to drink a contrast before the test.  I mixed this as instructed and dutifully drank it on time.  I found out when I got to the medical center that there is an IV that is also required.  This news was not originally given to me because according to the tech, most people are afraid of needles.  I am a 4-gallon blood donor who has no fear of needles and I informed her of this.  I also told her that since I had to drive 1 1/2 hours to have the test done, I did not hydrate myself because I did not want to stop every 30 minutes searching for a rest room. Therefore, the tech had to try more than once to get the IV in.

In all of the cases above, I felt like Charlie Brown did each time he was given a rock when he went trick-or-treating.  In addition, I was literally lying on my back much like Charlie Brown is with stars spinning over his head after he has missed the football.    However, also like Charlie Brown, I am the eternal optimist in that I think I’m going to “kick that football all the way to the moon” each time.   I have no doubt that I will succeed.

I am more than “Who’s next?”

I have had two surgeries (an oophorectomy and then a radical hysterectomy) and am healing well according to my gynecologic oncologist. Before I start chemotherapy, my incision needs to finish healing and all my tests need to be complete. Last week, I had a CAT scan and EKG and today I had lab work done at my local medical center.  The resounding theme that keeps coming to me is that more than anything, I want to be treated as a person and not as “Who’s next?”

My doctor nor her staff fall into this category but others who work in medical facilities are guilty of this impersonable approach.  I am referring to the person who completes the registration process so that tests can be done as well as others who perform the tests.  These employees have a revolving door of new faces sitting in front of them throughout their workday.  I understand their need to “keep a distance” so as not to get personally attached to patients.  I also understand that there are time constraints and they don’t want to cause a back-up of patients and lose precious time.  However, plain ol’ common courtesy has evidently gone by the wayside.  No eye contact.  No “Good Morning.”  No “How are you feeling today?”  Just “Who’s next?”

If these hard-working individuals would realize that they are the first people I see when I come in for what are deemed “routine tests,” perhaps they would change their demeanor to be a bit more pleasant and potentially diffuse a somewhat stressful situation rather than exacerbating it.  These tests or procedures may be “routine” to them because they see them/perform them all day, everyday.  They are not “routine” to me because I am not “routine” – I am one woman who has a name, who has feelings, who happens to be a cancer patient that needs to have these tests done, and who would like to be seen as such rather than as “Who’s next?”

A simple greeting and some eye contact would be welcomed with open arms by this gal who must endure “routine tests” on her road to recovering from cancer.

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