Friday, June 5, 2009

"Cancer Survivor"

Derek Swanson
Hoda Kotb
Frenchettia Payne
Massie Jadali
Lance Armstrong

These are cancer survivors. The Washington Cancer Institute sent me an invitation reminding me I'm part of this group. I've been invited to attend "National Cancer Survivors Day" at the Washington Hospital Center this Sunday.

I don't feel like I deserve the title "Cancer Survivor" at all. I didn't go through a fraction of what these people and tens of thousands of others did. I didn't undergo any treatment, chemotherapy or radiation. I didn't lose my hair. I wasn't even hospitalized. Yet by definition, I was diagnosed with cancer. Skin cancer. One year ago today.

I had Melanoma Stage 1B, Clark Level 4.
We caught it early.
It was a mole in the middle of my right forearm.

The invitation as well a recent conversation with friends has me thinking about my cancer experience. I've decided to record my memories, the traumas and the miracles for history's sake. I also want to do my small part to spread awareness and encourage others to know their skin and watch for signs.

My Story*
*I wrote this in different pieces, so if you're up to reading it (it's LOOOONG) please bear with me. I know it could be edited. I'm just happy to have it recorded.

April 4th: I remember when I first really took notice of the mole. My mom flew into town just before Anderson was born. When I picked her up at the airport the first thing she said to me was "What is that thing on your arm? Have you had it checked out?" It was a mole that had always (I think) been there then exploded in size during my third trimester. Looking back, it was huge and very noticeable. But I was 38 weeks pregnant. Everything was huge.

April 7th: I asked my OBGYN about it. She blew it off saying moles can grow during pregnancy. She said it was normal. I believed her. Why wouldn't I? She was a doctor. And I was about to have a baby, so I was a little distracted.

Clearly, I have many moles and freckles, but that monster on my right forearm was much bigger and different in color.

I remember, weeks later, debating whether or not I should visit a dermatologist to address a few things, including the mole. We were about to cancel our insurance (and temporarily go on private insurance), so we were cramming in many doctor appointments. I can't believe we debated this. I almost didn't go because it was inconvenient. Who would watch Anderson? When would we fit it in? The dermo was far away. We could use that co-pay money elsewhere. In the end we decided better safe than sorry. I'm so glad I'm safe and not sorry.

May 14th The dermatologist recommended the mole be biopsied, and she razored it off that day. I was glad the doctor was being thorough, but I still wasn't concerned. She biopsied two other skin tags while she was at it. No biggie.

May 31st: I will never forget running out of a movie (and missing the crucial beginning) to mail the letter to Fox (my employer) that canceled our insurance. I paused at the mailbox thinking, "We've received a clean bill of health from every doctor except the dermo. We never heard back after those biopsies." I hesitated. Then I reminded myself the letter had to be mailed by the 1st, or we would have to reimburse Fox for June insurance premiums. The following thought literally came, "Oh well, what's the worst that could happen? I'd have cancer? Yeah, right." I tossed the letter in the mail and ran back to the theater. (Thanks Mindy for sitting with me through the beginning of the same movie at the next showing so I could see it.)

If you look closely behind my bracelets you can see the mole. This is what was left after the first biopsy.

June 4th There was a massive storm. Torrential rains, high winds, tornadoes, hail. I was driving home from a Shade party when it began. I remember seeing all the tossed trees and damage the next morning. That storm was a lot like the storm we had here Wednesday night. It was eerily familiar. I began recording this story that night.

June 5th I got a phone call from the dermatologist. I couldn't understand anything she was saying. Her office had been damaged by the storm, so she was calling me from her cell phone and the reception was bad. To make matters worse she had a thick Indian accent. I kept asking her to repeat herself. Finally I caught the following words: "Melanoma... mole... tumor... malignant." I asked, "We're talking skin cancer?" She confirmed. The connection was terrible. I hung up. I was shaking. I was in disbelief. They don't tell you that kind of news over the phone, right? Surely I misunderstood. But I knew I had not mistaken those awful words. Skin cancer. I was 28 years old. I had a 7-week old baby. I had just canceled our insurance.

I called Harley who didn't answer his phone. I called my parents. They answered. Through the entire ordeal Harley and my Dad were surprisingly calm. They were deeply concerned, but never once freaked out. The news pushed my Mom into a minor nervous breakdown. We had a lot going on in our family a year ago. This was the final straw. Looking back I think this was hardest on her. Just yesterday she sent an email to a friend with updates on each of her kids. My update included the line: "Wendy has been cancer free for a year." I don't think that way. It's weird to me my Mom thinks that way and that she's talking about ME.

I followed the wise counsel of my Dad and called Fox to see if I could get back on their insurance. I was shocked to learn HR hadn't received my paperwork. It had been almost a week. It should have taken only 1 day for mail to reach Fox. I told HR to keep me on Fox insurance and disregard any cancellation paperwork they may receive. To my knowledge, Fox never received that paperwork. It was miraculously lost in the mail.

I went on with the week doing normal activities. I went visiting teaching. I babysat for a friend. We hosted a houseguest. Harley ran a 5K. We went out to dinner. I wasn't in pain. I didn't feel sick. The only thing that changed was I knew I had skin cancer and what was left of my biopsied mole was suddenly very big and ugly.

June 9th I called Haley and told her everything. She used to work in a dermatologist's office, and she helped me understand what the doctor told me over the phone. Turns out, the doctor and I had a miscommunication. Haley helped me discover I didn't have "Melanoma in Stage II," which is what I thought I heard (and had since been Googling), but instead had, "Melanoma in Situ," which is Stage 0. (Later, a second opinion would discover that was a misdiagnosis, and I actually had Stage 1.) Haley convinced me I was going to be okay. She used the word "cakewalk" to describe the simple surgery that would come next. I will forever be grateful to Haley for talking me through it. It's pretty ridiculous my childhood friend had to explain my diagnosis to me. It's pretty ridiculous that diagnosis was first miscommunicated and then wrong.

I remember not knowing how to tell people or if I should tell people. I knew I'd want to know if it were so-and-so, but what do you do? I didn't have the time or emotional energy to make individual phone calls. Do you send a mass email? Blog it? Make it your Facebook status? The truth is, we didn't tell a lot of people. Partly because the diagnosis kept changing. Partly because we didn't know how. I remember the reactions of those we did tell in great detail. Some overreacted. Others under-reacted, which in some cases, hurt my feelings. Some people acted like it wasn't that big of a deal. And maybe it wasn't. But, kind of, it was.

I was embarrassed when my Mom forwarded my long, detailed email, meant for only immediate family and close friends, to my entire extended family. She was well intended, but I felt silly knowing the entire family knew and they knew through a private email. I later gave my Mom a lesson on email etiquette.

June 11th I had my first appointment at Washington Cancer Institute at the Washington Hospital Center where I was treated by dermatologists specializing in melanoma. We learned I would need a second biopsy to ensure the tumor wasn't deeper than .76mm. The 2nd biopsy led to a 2nd opinion from a new pathologist. I appreciated how thorough the doctors at WCI were. Their motto: "Measure twice, cut once." These were the doctors who later correctly diagnosed me with Melanoma Stage 1B.

June 13th I came home after a busy day including Anderson's 2 month well visit and my biopsy #2 appointment. Anderson was asleep so I put him in his swing and fixed myself dinner. As I raised the first bite to my mouth, Anderson woke up screaming. He was having what we dubbed a "Souderton Sob," (because the first one happened in Souderton, PA) a sudden, LOUD, inconsolable crying fit. He had six during his first 3 months. They were scary to a first time parent. He'd cry so hard he couldn't breathe. The pediatrician said it was just reflux, not to worry and to do whatever it took to comfort him. I set down my fork, picked up my baby and started bouncing him in my non-stitched arm. I was hungry. I was tired. I was so overwhelmed. Harley was at school. My baby was screaming. My arm hurt. I still couldn't wrap my brain around skin cancer. We didn't have any family close to help or any close friends to call. I cried. I felt completely alone.

I remember feeling loved and not alone at other times as phone calls, emails, cards and efforts poured in from far away friends and family. My aunt Chris, who is a nurse, got so involved and was willing to pull all kinds of strings to get me help in Utah if needed. I will never forget Jessica's "Kick Cancer in the A$#" email pep talk or my sister Allison's willingness to fly out to help. I received a sweet card and a Joe's Crab Shack gift card from Kelly who explained she'd bring us dinner if she could, but she's in Utah, so this was the next best thing. I was so touched by this and many more gestures of kindness and love from others.

I hated that my summer plans were in jeopardy. One doctor told me to cancel my trip to Utah because lab results, a concrete diagnosis, and, at best case, only surgery, would take weeks. I was devastated. I'd been looking forward to summering in Utah since the day I found out I was pregnant. Family reunions, my brother's homecoming, showers, the 4th of July, friends, Anderson's blessing were all a "maybe" now. Beyond Utah was up in the air as well. Depending on the final diagnosis and surgery outcome, I may have to return to work after maternity leave, which, at that time, was not the plan.

Enter Dr. Singh, aka Dr. Fabulous. He was a young, enthusiastic resident who took such good care of me. He was thorough and firm when it mattered and realistic and flexible when it didn't. Best of all he "got it." He knew how important that Utah trip was to me. He made a few calls and got my lab work rushed through pathology. My results came back measuring 0.66mm deep, which meant the cancer was inflamed, not invasive, and had not spread. We planned to move forward with surgery to remove the tumor and surrounding area. Dr. Fabulous (that is seriously what I called him... even to his face) gave Harley a take home kit and permission to remove the one remaining stitch from my 2nd biopsy so we wouldn't have to come back the next week and cut our trip to Charlottesville short. Dr. Fabulous made more calls and booked a consultation with a plastic surgeon and an appointment for surgery a week later. All this meant my Utah trip would remain intact. I will forever be grateful to Dr. Fabulous. Best. doctor. I've. EVER. had. He told me he'd get me on that plane. And he did. He called me on my cell phone as I went into surgery to check in and wish me well. He was so great.

Weekend visit in Charlottesville with a bandage on my arm from biopsy #2.

June 16th I met with the plastic surgeon who drew on my arm and talked to me about the incision. He warned me he may need to do a skin graft. Fortunately, my recently prego body had enough extra flab on my arm, so that wasn't necessary.

The depth of the tumor determined the size of the incision. At the time of the drawings we didn't know how deep the tumor was. I ended up needing the larger incision.

Dr. Oldham told me my scar would be the length of a credit card.
It's more like the length of a checkbook.

June 24th Surgery Day. They kept me awake. I refused to watch. I kept myself distracted by starring at posters on the wall and telling Dr. Oldham all about my upcoming trip. Then I asked about his practice and which surgeries are most popular in Montgomery County. Answer: breast implants and tummy tucks. In the end, he talked me into looking at my arm. I wish I hadn't. All I remember is a lot of blood. Dr. Oldham told me the surgery went "beautifully," and I wouldn't need to see him again. He put big fat bandages on my arm and sent me home with painkillers. I was told I shouldn't lift anything heavy, including Anderson, and definitely not heavy luggage. I couldn't nurse on my right side.

June 25th I flew to Utah the next day. By myself. With Anderson. With the use of only one arm. Harley walked me all the way to the gate. At my Grandma's insistence, Harley arranged for inter-terminal transportation for me during my layover. I felt pretty stupid, but I knew I shouldn't risk lifting anything. Anderson was a complete angel on both flights and slept almost the entire time. Fellow passengers were nice and helpful. My parents were waiting on the other end.

24 hours after surgery I took off the white bandages and this is what was underneath.

Being in Utah was wonderful. My family was so helpful. I was supposed to keep my arm protected, so my amazing mom made fashionable arm covers. She took my Dad's tube socks, cut off the foot and sewed around the edge. I looked pretty dumb, but I was happy to have the protection. My arm was sore and the mere thought of bumping it into anything worried me.

Tube sock in black...
(My mom is the best, even with her eyes closed.)

And in white

I wasn't supposed to submerge my arm and the biggest summer bummer: no water skiing. :(

Anna kindly Photoshopped my scar after our family photo shoot. Thank you, Anna!

July 7th My parent's neighbor, Dr. Blood, removed my stitch. I was upset how long, bruised and lumpy the scar was. I was told it would take a year to heal. People tell me the scar looks great. They say they hardly notice it. Of course, I notice it. I wish it looked better. But looking back at these pictures I see it has significantly improved. Thank you, Mederma.

My fresh scar: bruised, lumpy and long

July 17th (?) I finally got the great news: "You are cancer free!" The lab results came back from surgery and all margins were clear. I was thrilled to put this behind me.

It is behind me. Sort of. I had an ugly reminder on my arm. I receive "cancer survivor" invites in the mail. The biggest one: I see melanoma dermatologists regularly. I've been going every three months for the last year. Now it will change to every four months, then twice a year. In five years I will go once a year for the rest of my life. I'm at a high risk of reoccurrence. I'm fine with regular check ups. I get a thorough, full body examine, and then I don't worry about it. I know my skin is in good hands.

My experience motivated every member of my family to see a dermatologist. My case was not hereditary, so we can't blame my fair skin. My case was random. "Unluck" of the draw. No one knows what causes melanoma. But having fair skin and a history of carcinoma in the family puts us all at greater risk.

In hindsight, it was more mentally overwhelming, emotionally exhausting and logistically frustrating that it was physically anything. I'm grateful for the miracles, both big and small, along the way. I'm deeply appreciative for the support and love we were shown. I can see now how blessed we were during those months.

Me, my scar and the guy who brought it to my attention today.
Doctors suspect without the pregnancy the mole would have grown much slower and would have probably gone unnoticed. Who knows when we would have finally caught it.

Do you notice my scar? (I do.)

Up close today

About the length of a highlighter

Have you ever tried to take a picture of your right arm? It's tricky. I never noticed cameras are designed for right-handers until today.

I would strongly encourage anyone who has a suspicious looking mole to see a doctor. Know your skin. Catch changes early. And go to a dermatologist. Remember, my very qualified OBGYN told me it was nothing.

The ABCDEs of Moles

Asymmetrical (moles should be symmetrical)
Borders (moles should be smooth, not irregular)
Coloring (moles should be one color, not show multiple shades)
Diameter (moles should not be larger than a pencil-top eraser)
E. Enlarging (moles should not change in size)

If your mole falls into any of these categories get it checked out! Melanoma is a rare type of skin cancer but causes the majority of skin cancer related deaths.


anna banana said...

Thank you for the history! I feel like I missed so much of what was going on with it, it was great to read the whole story, and you will be grateful you recorded it. You are a survivor, love you!

Kara said...

So glad you wrote the whole thing down; so will your posterity. I think your scar is beautiful- it adds character to an otherwise boring arm! Love you girl- so grateful you "beat the beast."

Ryan and Cheryl Harris said...

Great post. I read the whole thing and enjoyed it. I am going to make an appointment with my derm. next week. I have a couple that are looking suspicious. I can't wait until Ryan is a dermatologist and he can hook us all up regularly.

Ali Snow said...

Wow, that was long. I had forgotten a lot of those details. You'll be grateful you have that documented. I noticed you blurred out your CC number this time. Good girl. We're all happy it was nothing more than a quick surgery to make you cancer free.

Claudia said...

I had no idea. I am so sorry you went through this, but so glad you are 1 year cancer free. You are a survivor for so many reasons.

marti said...

What a terrible thing to go through while trying to figure out how to be a mom. I'm so glad you found Dr. Fabulous. You really do have to fight to get good health care sometimes. I'm so glad you're okay!

Kristi, Liezl, Quincy, and Josh said...

Wow Wendy, I feel silly I had no idea. I also feel super guilty that I think we were the ones who had you babysit when you first found out. You are amazing. Thanks for your example.

Crystal said...

yes I too was inspired by your story to go get my post pregnancy moles checked. Thank you for sharing the small and big miracles that brought you to today.

Mom said...

I just had a good cry.

Kelly D. said...

I'm SO thankful you're cancer free! Last year was so scary and I hated that you had to go through all that RIGHT after having Anderson. I know I've said this before, but I so admire how brave you were through it all!

My fingers are crossed that you and the big C never, ever have another encounter!

Jess said...

Wow, Wendy, I had no idea! All that and a new baby too? I'm so glad you made it through okay.

Ligia said...

Wendy, you are a survivor and I am so grateful for your example. You never cease to amaze me. Really. I am so glad to call you my friend.

Jen said...

I hadn't known about it previously, so thanks for sharing. I'm so glad that things are going so well now!

Harley King said...

I'm so glad you you didn't listen to me when I tried to talk you out of going to the doctor to save a $10 copay.

You are so worth $10.

Sarah S said...

It was really interesting reading your post and the progression of everything you went through with your skin cancer. I'm so sorry you had to go through all of that (and still do). I can't imagine how overwhelming that must have felt so soon after having a baby. You are TOUGH.

And Harley's comment made me laugh. You're worth way more than $10 :)

Rachel said...

Glad you wrote this out--the world needs to know your story!! I definitely have been more aware of any moles I have (none) lately.

So glad you went to that dermat0logist.

Szobonya Bercel said...

I'm so glad you're all right now...

Kelley said...

I am so glad you wrote your experience down and felt like you could share it. You approach life with such amazing energy. You are everything good all wrapped into one beautiful woman! Love you W2!

Emily said...

I've been waiting to read this post for a time when I wouldn't be here I am a week or so later... ;-)

I'm so glad you caught that mole, it is such a scary thing.

And the insurance thing too...STRESS. Well, the entire thing was stressful, duh.

I, too, had crazy mole changes after my 2nd pregnancy--and had one deeply removed. Yucky. But mine turned out cancer free. Still, reading your story makes me decide I will be extra cautious.


Joo Lin said...

Love ya Wendy - you're one of the coolest people I know. I'm lucky to be able to say we were roomies in college :)

The Knisley's said...

Wendy! Oh my goodness! I've been so out of the blogging world lately! I'm soo sorry about everything you went through. My heart goes out to you and I'm so happy that everything is alright now. You will continue to be in my prayers. Love, Faye