The importance of being earnest about skin checks

Please welcome Julie Pippert, a friend and fellow member of the American Cancer Society’s Blogging Advisory Council.

It was just this little spot. An annoying little spot on my nose. It would start to go away and then would flare up, get a sort of crusty scab, then fade down to something like a scar. When it first arrived, I thought it was acne. It was on my nose, after all, and it flared up during PMS. But it never went away, it just kept cycling up and down as my body cycled up and down.

The thing is, I knew it was something. My mother had skin cancer years ago when I was in college. She went in for a day patient surgery to have it removed, and it all began with this annoying spot on her nose. In my early twenties about twenty years ago I had this mole that was exhibiting those “red flag” symptoms and the dermatologist excised the area and sent samples for biopsy. Nothing, thankfully, but the doctor warned me I was the poster child for skin cancer, and the pre-cancerous spot on my arm was a big screaming warning.

I heeded it, and became diligent about limiting sun exposure and wearing sun block. I always wore hats out, too. As a result, my skin looks pretty good for my age, but…it was not enough and too little, too late.

That spot on my nose was why my big Choose You goal was skin care and skin checks. So yesterday I went to the dermatologist for a long overdue skin check, and she found several areas of skin cancer. The spot on the nose, she treated right away. The rest are a little more complicated and I go back very soon for treatment of those. The bad news? Skin cancer. The good news? I got a check and it is all caught early. The shock? The area of largest concern was not even a spot I worried about. I thought it was just a no big deal freckle.

As soon as I got home I notified my Choose You group for support. I knew they’d accept my whining and give me the love I craved. The second thing I did was dive into the Google, as much as I knew that was a bad idea. However, I went to the American Cancer Society’s skin cancer facts site and got really good, non-scary information.

So how did I get skin cancer and what does it mean?

I am fair complected, got sunburns as a child, have a family history of skin cancer, and I am in the sun every day (with sun block on). My skin has little melatonin, and responds to UV by freckling. I also have moles, some of which have been atypical.

The important thing is that I got that check. So we caught this early and can treat it with one of the simple treatments, including cryosurgery ( liquid nitrogen freezing off of the area) and excision or Mohs.

The worrisome spot on my nose is very early stages and was treated with cryosurgery right in the office. I’ll return for a biopsy of the other areas. From that point, we’ll know better what the situation is and the best method of treatment. Right now, my doctor suspect, based on visual, that it’s all local. That’s good news. Basal cell and squamous cell carcinoma have a very high cure rate.

What made me suspicious?

I knew my mother’s story of her skin cancer, so when the spot on my nose didn’t heal, I knew I had a problem. I delayed longer than I should have — a warning sign is a sore that doesn’t heal in two weeks, so I should have gotten check a couple of months ago — but luckily I did go get checked.

Skin cancer is actually the most common cancer, and over 2 million Americans will get the same diagnosis as me this year.

However, the more serious areas did not even arouse my suspicions and I’m still not sure why they concerned my doctor. At best, I can think the only symptom might be a slight spread of brown pigmentation.

The point there is: GO GET CHECKED. You can’t diagnose yourself, only a doctor is trained to know for sure.

If you are at risk, you should get checked early and regularly.

Could I have prevented this?

Skin cancer is fairly preventable, but I had so many risk factors I’m not going to play the “if only I had” blame game. Nobody was taking skin cancer or sun block seriously in the 70s nor even in the 80s (aka the Baby oil and Crisco days). Because of my fair skin, and my tendency to burn, I was never a sun goddess. As a child, my mother even made me wear a t-shirt over my swim suit for protection. I don’t think we even knew about sunblock when I was a child. So even though I never stayed in the sun much, wore hats, and added in sunblock as soon as I was aware, I still got the cancer.

I have made lots of changes for my kids, even though, courtesy of their dark-skinned father, they have better melatonin and pigment than I do.

I follow the skin care/cancer prevention advice from ACS:

Can skin cancer be prevented? The best ways to lower the risk of non-melanoma skin cancer are to avoid intense sunlight for long periods of time and to practice sun safety. You can continue to exercise and enjoy the outdoors while practicing sun safety at the same time. Here are some ways you can do this:

• Avoid the sun between 10 a.m. and 4 p.m.
• Seek shade: Look for shade, especially in the middle of the day when the sun’s rays are strongest. Practice the shadow rule and teach it to children. If your shadow is shorter than you, the sun’s rays are at their strongest.
• Slip on a shirt: Cover up with protective clothing to guard as much skin as possible when you are out in the sun. Choose comfortable clothes made of tightly woven fabrics that you cannot see through when held up to a light.
• Slop on sunscreen: Use sunscreen and lip balm with a sun protection factor (SPF) of 15 or higher. Apply a generous amount of sunscreen (about a palmful) and reapply after swimming, toweling dry, or perspiring. Use sunscreen even on hazy or overcast days.
• Slap on a hat: Cover your head with a wide-brimmed hat, shading your face, ears, and neck. If you choose a baseball cap, remember to protect your ears and neck with sunscreen.
• Wrap on sunglasses: Wear sunglasses with 99% to 100% UV absorption to provide optimal protection for the eyes and the surrounding skin.
• Follow these practices to protect your skin even on cloudy or overcast days. UV rays travel through clouds.
• Avoid other sources of UV light. Tanning beds and sun lamps are dangerous because they can damage your skin.

Thanks for listening, friends. You can read more of Julie’s journey at Julie Pippert: Using My Words and the Choose You Blog for the American Cancer Society, where this post was originally posted. I’m also hoping she’ll come back here and share more with our Mothers With Cancer community.

Five Years Ago Today…

By Jenster

Five years ago today I had the life-saving surgery to remove the cancerous tumor from my body. Not only was the malignancy removed, my entire left breast was removed.

Five years ago today I had a huge incision across the concave side of my chest and a drainage tube at each end. Of course, five years ago today I didn’t actually see the incision. That happened five years ago tomorrow.

Five years ago today we didn’t know exactly what we were dealing with – if the cancer had spread and what kind of treatment I’d have to go through.

Five years ago today I had a lot of questions. Or at least I think I had a lot of questions. Five years ago today I was on pretty good meds so I might not have had any questions other than when I’d get the next happy pill.

Five years ago today I knew my life had been forever altered, but I had no idea to what extent. Five years ago today I figured I’d go through treatment – whatever that might mean – and eventually everything would be back to normal.

Five years ago today I was a little delusional.

Five years ago today somebody stole my pink ribbon car magnet off the back of my van while I was having a mastectomy.

Five years ago today the surgical waiting room was full of people I love with all my heart. Those people prayed for me, they told stories about me and they ate my peanut M&Ms.

Five years ago today I assured those people I love that everything would be okay as I left them at the surgical waiting room on my way back to pre-op. (I might not have been quite so magnanimous had I known they were going to eat my peanut M&Ms.)

Five years ago today I sang “I Want To Be Sedated” as they wheeled me into the operating room. At least that’s the story Todd tells. With my history it’s very likely.

Five years ago today my sister, Terri, and my Mother-In-Law went shopping and bought me all sorts of beautiful things to make my recovery as pleasant as possible.

More than five years ago today I believed Todd loved me and God would see us through this whole ordeal.

Five years ago today was the start of that belief turning into knowledge.

Today is a huge day for me. Five years in the life of a cancer survivor is a big thing. It’s that magic day when the risk of recurrence or metastasis is reduced. I like the sound of that.

But…

Today is the day after Lynn Redgrave died from breast cancer.

Today I have breast cancer sisters with recurrences and metastases.

Today I’m thrilled to have made it to five years with my four favorite words, “No Evidence of Disease”, but I can’t help but think of those who haven’t been so fortunate.

So…

Today I will celebrate my milestone.

Today I will enjoy the beautiful roses Todd bought me.

Today I will relish every kind comment either in person or on my Facebook status.

Today I will thank God for my good health.

And…

Sunday I will walk in the Philadelphia Race for the Cure for every woman I know who has dealt/is dealing with this disease.

Today Todd gave me a dozen red roses and five pink roses:

Today Todd gave me five more pink roses for my bedside table:

Today it’s good to be me.

Crossposted at Jenster’s Musings

Struggling.

(by Susan, diagnosed with a recurrence of inflammatory or infiltrating breast cancer and locoregional metastasis in March/April 2010.)

I admit, I’m struggling.

I suppose it’s not uncommon for a person diagnosed with a third cancer in three years or a metastasis of a previous cancer to be anxious, quiet, and withdrawn.

I know it’s not uncommon for us to withdraw into ourselves or close family, to concentrate on the logistics of cancer diagnosis, the testing, the treatments, the side effects, the complications, the procedures, the planning appointments, the specialists, and the treatments to come. That’s normal, right?

But I’ve been surprised a bit at how this all has gone down. I am relying more on my nearest and dearest, setting up playdates nearly every day (even though many of them fall through because of illness, mine, theirs, or kids), cleaning the house obsessively (because God forbid it be out of order should someone drop by; they might suspect I’m struggling), spring cleaning and changing out the winter clothes for summer (labeling bins so that the change back for fall is easy for whoever does the chore, since I don’t know how sick I’ll be then), setting up summer activities to distract and engage the children, offering to watch others’ kids when possible (since I’ll need them to watch mine), joining a church again at last (I need to have a family of faith, since I was so disappointed by the brush-off that I got from my pastor last time I was in treatment, homebound, worried, and desperate to understand), paying the bills (and setting them up for automatic payment), calling contractors (to paint, to rewire, to fix the gutters, things I’ve put off for months or years), giving away outgrown toys and reorganizing the lego and playmobil sets that march across the playroom. Mundane stuff, right?

Isn’t this the time that I feel so blessed to have caught the cancer early enough for simple treatment? Before it went to my bones or brain?

Isn’t this the time that I spend all day snuggling my children? (Actually, I do. I spend all day snuggling and reading to my children. And then when they go to school or play independently I clean, so I can snuggle them more when they come back. This is not the way I used to do it. I used to work when they were at school, and teach them to clean with me (among many, many other things) when they were at home. But I can’t concentrate on work and do a good job right now. Luckily, the laundry doesn’t require much concentration. I have control over the laundry. I don’t have control over the cancer.)

Isn’t this the time that I reflect, here on the blog, and share these thoughts with you? It is, isn’t it? But why have I not been able to write real, intimate thoughts like this with you lately? Why am I so quiet? Why can’t I sit here and tell you, once again, like I pledged in 2007, to tell you what it’s really like to be a cancer patient and survivor? Am I ashamed to tell you that this time it’s not as easy? That some days, I don’t know how we’ll get through it? That I rage against the cancer in private? That I sink into my bed, seeking comfort? That I still have no answers for why this all is happening to me, and I search my past, wondering if it was something in the physics building at college or graduate school, wondering if it was the work I did in the clean room, marshalling van der waals forces to move nanoparticles from needle to needle, or those years with the mass spectrometer, where I was the only one to consistently wear my radiation monitor, even though it showed only low levels? That I wonder if the cancer was caused by the mercury spill that I worked next to for four days, because I didn’t know it was there and the technician didn’t want to be bothered with cleaning it up? That maybe if I had become a writer, or a microbiologist, or something on the other side of campus I wouldn’t be sick today? That then I feel ashamed for questioning, because surely all the research labs I worked in and was surrounded by followed standard radiation protocols and were safe for students and researchers? That I know that I can’t blame myself for contracting inflammatory breast cancer, Paget’s, and infiltrating breast cancer (if that’s even what it is), but yet, some days, I still do?

Isn’t this the time that I feel grateful?

I want to feel grateful. I want to feel that grace that came over me last time when I realized how close a call I had. I want to write words of hope and strength and coping here, so that others may see that the fight is not hopeless and dismal. I want to reach back to so many who have reached out, on this blog, on their own blogs, on twitter, and in person, dropping by or taking me out, helping me laugh again.

I love it. I love you. I do. And I appreciate it so much more than I have been able to say.

I haven’t been able to say it. Truthfully, I’m struggling. I’m not sleeping at night (at all, some nights, four in the last three weeks, and only a few hours most nights). I’m not eating, but I’ve gained 14 pounds since my medication was switched in February. I’ve found out only this week that two additional side effects of the aromasin are weight gain and the inability to lose weight. Nice. Thanks a lot, aromasin. No wonder my clothes don’t fit and I feel so crappy helping the kids scale the pirate ship or scrambling into the tunnel at the nature center.

I’m worried about my kids and how they’re coping. I’m helicopter parenting them at school, I know, but I want them to be in a place where there is love and friendship, not exclusion, pre-bullying, and fighting games. I’ve seen the effects of these things recently, and it makes me sick. I’m working so hard to provide them with supportive, positive playdates to counteract that time when they are essentially unsupervised on the playground at school. I’m looking into support for families now, before it gets worse, and I’m calling on resources from the American Cancer Society, The Wellness Community, CancerCare for Kids, and KidsKonnected to help me find out where to go and what to do to help my kids weather the stormy days as I adjust to the new treatment and recover from the surgery and its complications (the seroma is quite large, needing draining several times a week, and the draining has introduced an infection into the wound, which keeps me awake all night now with alternating hot flashes and chills, in two to ten minute cycles, for hours). I’m looking for other resources now, finally able to reach out and ask for help, and I want most of all help for my children, to help them feel like regular kids, and to give them a place where they can talk if they need to. I am looking. I don’t have a link for that. I want to find a place, though, and I am finally strong enough to reach out and ask. Have you seen one? Do you know a place on the East Coast where kids with cancer can relax and talk to each other or a professional about their fears?

I am realizing that I’m withdrawn, because I’m afraid. I make plans, but I’m not sure whether I’m planning to enjoy these things with my children, or providing them a place to go when I’m exhausted and in pain from the radiation that is to come. I tidy up the paperwork, the finances, the house, old contracts, loose ends, in hopes of regaining control over something concrete in this life. I realize now that it’s probably because the thing that I want to control the most — cancer — is not really up to me anymore. I have a treatment plan, with the endorsement of the oncology experts at Georgetown and Sloan-Kettering, and now I must trust it and move forward with hope and confidence.

I want to be strong. I want to accept this with grace. I want to just take it in stride and continue on with my blogs, my projects, my playdates, and my work. One day soon I will. But for now, I struggle. I admit it.

I admit it.

Crossposted on Toddler Planet.

The Iceburg of Cancer

By Lorri Steer

Monday our local paper ran a cover story about a play that the local community college is presenting this week. It’s called “At Wit’s Start” and was written by a young doctor who found herself battling stage 4 ovarian cancer. It’s based on her Pulitzer Prize winning book. I can’t wait to see the show but I had issue with how part of the article was portrayed. My letter follows.

This is for all the women who are currently going through chemo and dealing with hair loss. I know your pain.

Thank you for your cover article on the upcoming Front Range Community College play “At Wit’s Start.” As a young women living with advanced stage cancer myself, I very much look forward to attending the show.

While Mr. Rochat’s article is well written, I take issue with one point. The caption on the “If You Go” photo reads: “Stephanie Roscoe has to shave her head every other day for the role of Dr. Vivien Wit.” (italics mine.) She chooses to shave her hair to add an authentic feel to character. A sacrifice for art? Perhaps. The same unwilling “has to” hair loss chemotherapy patients endure? Not at all.

I’m bothered by the implication that there is any kind of likeness in choosing to shave one’s head for a play and loosing one’s hair (including eyebrows, eyelashes and all bodily hair) in a medical gamble to save one’s life from a killer disease.

Please don’t draw parallels between the baldness a cancer patient endures and the shaved head of an actress. Cancer’s suffering runs deep and a bald head is just the tip of the ice burg.