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

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.

 

 

Becoming one of the “follicularly challenged” (a.k.a. bald)

Several years ago, I watched the Grammys where Melissa Etheridge sang a Janis Joplin tribute with Joss Stone (another favorite artist of mine). Melissa was bald. Completely bald. She had big beautiful earrings, no hair, and her voice was incredibly strong. I remember thinking, “Wow. What an inspiration! She’s fighting breast cancer and she’s showing that she can still be her amazingly talented self even without hair. She’s not trying to hide it – she’s showing the world that she’s strong and cancer won’t get her.” I found her performance very empowering and I remember telling myself if I was ever faced with cancer, I would do the same – forget the wigs and go bald. A self-fulfilling prophecy, perhaps, because fast-forward to today and I find myself in that very situation.

When my doctor originally spoke to me about undergoing chemotherapy, she let me know that Taxol causes hair loss and that it comes out 18-21 days after the first treatment. I am in that “window” now and her words have come true. A few days ago, my hair started coming out in small clumps. Yesterday, I lost a huge amount while taking a shower. I have taken matters into my own hands – literally – and have decided to shave my head.

Today, I enlisted the help of my hairdresser who’s been doing my hair for several years. We have developed a warm friendship over the years and she knows more about my hair than I do. She graciously agreed to “do the deed.” She also helped me with my scarves which I ordered last month in preparation for this imminent day. (I ordered scarves to keep my head warm because I live in New England and wintertime is rapidly approaching.)

First day of chemotherapy (11.10.11) – full head of hair

It starts to come off

Only the bangs are left

Bald is beautiful

My pink camouflage scarf - FIGHT LIKE A GIRL!

I am o.k. with losing my hair. This is part of the journey to beating cancer. Each person needs to make his/her own decision when faced with hair loss. I have nothing against wigs. For me, I am choosing not to wear a wig at this time because my scalp is sensitive due to chemo. I may change my mind at some point but for now I’m comfortable going without one.

Thank you, Melissa Etheridge, for showing the world that a woman fighting cancer can still be beautiful without hair.

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