Prompted by a hashtag!

For World Ovarian Cancer Day on May 8th this year, OCRA ran a campaign called #ReachForTheScars. OCRA's goal with this program was to spotlight the stories, experience and the physical visible and invisible scars of women with ovarian cancer .

We who have been diagnosed have scars that are visible - although we may choose to hide those and some scars that are invisible. Your life being on the line can be a stressful and dare I say traumatic experience for those diagnosed with ovarian cancer. So with these scars there are stories. Here is mine once again. 

For World Ovarian Cancer Day, I chose this year to do a quick watercolor painting of my scars as part of the #ReachForTheScars campaign. These scars are hidden under clothes most of the time. You will not see these scars since you won't find me wearing a bikini or crop shirts. 

The first scar was the vertical one, made in 2005. It came after an hours long surgery - hysterectomy, oopherectomy and debulking surgery for stage 3B high grade serous ovarian cancer. This one healed over time as I continued treatment with nine cycles of carboplatin and taxol. In 2006 there was no evidence of disease. 

I recurred in 2008. The lesions that appeared on my liver and spleen were discreet,  so surgery was an option. I had choices : chemo ( carbo / taxol again) first then surgery, chemo first then surgery or a clinical trial which included bevacizumab.  I chose the surgery first which was done by a surgical oncologist along with my gyn onc. That surgery is what led to my second scar, a  horizontal one.  The surgeon removed my spleen on the left side of my abdomen and resectioned the lower lobe of my  liver which was on the right side of my abdomen. Their removal at the same time is why my OC scars now look like a T. 

Along with other cancer survivors, I carry invisible scars too. I continue to fear a recurrence. The fear is not as strong as in the early years of my survivorship but there are times when news of another long term survivor recurring after 15 years brings it back into the forefront.  I deal with some neuropathy in my toes. I have learned to deal with it by buying shoes with larger toe boxes. I admit they are not the most fashionable shoes but they work for me. And let's not forget how I still forget the names of things.  Thanks chemo brain!

I had thought that those two scars would be my last but just this week I have gained a new one. In April, I pointed out a new pink rough spot on the back of my arm to my dermatologist. After a biopsy came back that the spot was basal cell carcinoma, I decided to have incisional surgery this week to have it removed . This scar will be more visible due to its location and may lead to people asking questions about it. That is OK though. Then I can tell them how important it is to check your skin and see a dermatologist if you see anything new or a spot that changes in appearance. As we head into summer -my advice is to wear sunscreen , hats and spf 50 clothing when out in the sun for a period of time. 

 Do you have hidden scars caused by ovarian cancer? Share them in the comments. 

 Dee

Every Day is a Blessing! 

 

 

Scars

Recently the #bcsm community discussed the invisible scars of breast cancer. It was an interesting and fast paced chat on Twitter. Later one survivor described her scars in a blog posted on Nancy’s Point  http://nancyspoint.com/breast-cancer-is-a-string-of-losses/ . I tweeted that gyn cancer survivors have invisible scars too and then decided to write about it here. 

Scars can be both visible and invisible. I have a number of visible scars. I have a scar on my neck from thyroid surgery in 1982. From my initial hysterectomy and debulking surgery in 2005, I have an eight inch vertical scar that begins at my belly button. From my liver resection and spleenectomy in 2008, I have two scars. One that travels 10 inches horizontally across my abdomen below my rib cage and another 4 inch vertical scar that meets up with the scar from my hysterectomy.The scars together have the shape of a capital letter T. 

These scars are starting to fade since my last surgery. But harder to fade are the scars that are invisible to others.These scars are very individual just as every woman diagnosed with ovarian cancer has a similar but different journey with the disease. Some of these scars can be physically painful while others can be emotionally painful. 

My first invisible scar is the neuropathy in my toes. Sometimes my toes are numb and sometimes my toes feel as if someone is sticking a knife into them. No one can tell when my toes are  bothering me but me, unless of course you have caught me taking off my shoe and rubbed my toes. 

I have trouble remembering the names of everyday things. Instead, I describe what it is I am talking about. I have written about this happening a few times in this blog. I read things and reread things and reread things again. I write entries for this blog and leave blank spaces because I can’t remember specific words. It takes me multiple tries to write what it is I want to say. ( Three days to draft, reread, rewrite this entry.) When I give talks I write the speech and then practice it over and over again. I am happy when my family can tell me the word I am missing and help me out.  But at times not remembering has brought me to tears.  I am sure that the invisible scar of chemobrain as survivors call it or cognitive impairtment as professionals call it  is due to the life-saving 16 chemotherapy treatments that have put me in remission. 

Instant menopause has brought it’s own set of invisible scars. Sure I was 50 and not having another child when my ovaries, uterus etc were removed but that doesn’t mean  the physical changes that have occurred due to the surgery are any less painful. Some women in their 20s and 30s are dealing with loosing their fertility. Some of us are experiencing hot flashes sooner than expected and some of us are dealing with issues that are difficult to talk about even with our physicians. 

Then there is the invisible scar due to worrying about a recurrence or waiting for the other shoe to drop. This scar is invisible to others most of the time. It is my own personal worry. Is that gas or bloating? Is that pain under my ribs from scar tissue or is It back? Why am I urinating more frequently? Most times I can talk myself back from the edge by telling myself that I have a plan which includes seeing my doctor frequently enough that if It does come back we will treat It quickly. Sometimes this scar does become visible as “scanxiety”. I am not a pleasant person to be around when it comes time to have a CA-125 blood test or a CT scan. Until the results are in and I get the all clear for 4 more months I am a nervous Nellie. 

I also have an invisible scar from loss. Being in the club of ovarian cancer survivors automatically brings along with it loss.  Support groups and involvement in local ovarian cancer organizations has afforded me the opportunity to share this journey with some pretty incredible women. We have helped each other along the way with hugs, phones calls, e-mails and laughs. But along with this joy there is the pain of their loss. Every death takes it toll. Would I rather to have never met these woman? No not at all. It was wonderful having them in my life. 

Those around us may think that since we aren’t in active treatment cancer no longer impacts our lives. But for those of us living with a cancer diagnosis and treatment may be sad or scared or nervous long after. We may put on a happy face to our family or friends because we don't want them to worry. Sometimes we can deal with these scars ourselves and sometimes we need help from support groups, social workers or therapists. We are not weak when we reach out for help  but rather we are exhibiting strength in recognizing these invisible scars. 

Dee 

Every Day is a Blessing!