Category Archives: MM = Malignant Melanoma

Sometimes, Cancer Isn’t Cured with Stitches

Yesterday I found out that a young woman who I was introduced to via social networking shortly after I was diagnosed with Malignant Melanoma had passed away from her cancer. She was only 40 and left behind a husband and two young sons, and her name is Dawn.

While my mole was simply removed with a wide-margin surgery, her treatment was to take out a couple of her lymph nodes in her groin to biopsy them as well along with the mole removal. Dawn’s treatment was considered successful after her second lymph node surgery, CT and PET scans in the winter of 2009, a full year before my diagnosis and treatment. She was instructed to get a mole check every three months; I went in every six.

Last February when she told her doctor she’d been having pain, he proactively ordered a scan even though she’d been given the all clear by her dermatologist. That’s when they discovered her cancer had returned. Then after some chemo treatment, they performed surgery just three weeks ago and basically found the tumors were inoperable. Last week she came home and began “planning visitations and playlists“.

Her story is both frightening similar and altogether different from mine. I don’t compare my situation her hers to bring attention to myself, but as a simple reminder to that I don’t believe that fate has anything to do with how our lives turn out. It’s simply luck, whether good or bad. I didn’t “deserve” getting cancer, and Dawn certainly didn’t “deserve” to die. A roll of dice has left me cancer-free (as far as I know), but her death has shaken me to the quick. In another six months, my diagnosis could be as equally dire. Like her, I look back on past symptoms (the severe breast pain; the bone-melting fatigue) and wonder if the doctors really did weigh in my past diagnosis.

I don’t want to harp on you, my friends, the seriousness and dangers of tanning, whether by bed or sun, but if my story of survival doesn’t convince you that you need to be sun-conscious, I hope that Dawn’s life and her legacy does.

Sing It With Me Now: Sunshiiiine On My Shoooooulders Makes Me Happyyyyyy

In the past week I ran across this article about an elderly gentleman who after nearly three decades of truck-driving, developed an interesting case of what is called unilateral dermatoheliosis (a fancy term for "sun damage"). The left side of his face (hence the "unilateral") is visibly more wrinkled and droopy than the right. The photograph is meant to shock us as to the damage caused by repetitive exposure to the sun and serve as a warning to reduce our risks. Not surprisingly, this has led to the debate as to how evil sunscreen is, chemically altering our bodies and generating third nipples and pus-filled toenails. Have you even met me??

I was diagnosed with malignant melanoma in 2010 and I unashamedly admit to harping on my friends who unwittingly announce, "ohemgee! I got The Worse sunburn this weekend while boating!" Frankly, I don’t find it an amusing anecdote, and I find it similar to my 20-something nieces and nephews regaling of how much they puked in the neighbor’s yard last night after binge-drinking. It’s stupid, self-harming behavior that’s entirely preventable.

It’s been a long time since I have felt so unwavering about a topic. I’m about to get up on my high horse and RIIIIIIDE!!

What really twisted my knickers were the remarks that came up in response to this particular image (which I discovered has been circulating around the ‘web for a couple years now…), specifically how they would rather send their kids outside without sunscreen and expose them to the risks of the sun rather than apply sunscreen because the risks that can be attributed to the chemicals. Then there’s the argument that exposure to the sun is good for us and our children.

…Regretfully, this is true.

My oldest sister was diagnosed with rickets as a little girl. When the disease was described to me, I imagined that she had decided to hole up in the basement and live among the toads and salamanders we shared the dirt walls with, and that she only came up to go to school. It explained so much about my weird sister… Now of course, I was just a child then and have since realized that my sister’s rickets resulted in her refusal to drink or eat dairy of any kind (not an uncommon side-affect of having been raised on a dairy farm. Some day I’ll tell you about chickens. REAL chickens.). My sister did not acquire rickets because she was not outside getting sun, it was her crappy diet.

"Sunlight lets human skin cells convert Vitamin D from an inactive to active state," (Wikipedia) That’s the simplest definition I have found, but what’s difficult to calculate is HOW much sunlight is needed to do this. Surprisingly, it is very little. VERY little: 10 minutes a day for most Caucasians. For me, that’s how long it takes me to walk up our lane to the mailbox and back dressed in shorts and a t-shirt. Plus, our bodies can store Vitamin D, which is how we get by in the winter months, in addition to foods that are supplemented with the vitamin. That means if you are going boating, beaching or biking, you’re going to need to protect yourself from the sun for all but a handful of minutes, which is the amount of time it will take for you to properly apply it. Sunscreens are not your only options here, but let’s talk about it.

Sunscreens can be filled with lots of nasty chemicals. The kind of stuff you don’t want on your skin when you go out in the sun, much less every day and certainly not every day on your kid’s skin. I found this wonderful website that can help you immensely wade through the goop of sunscreens, whether you just need a lip balm or something mineral-free for your family. It’s Environmental Working Group (ewg.org) and this database on their site lets you look up the sunscreen you are using; research the ones that your friends have "recommended"; or to research what ones are the best to go out and get. I wish I had known of this website before our Disney trip as it includes make-up and moisturizers as well.

From this website, a bullet-point review of sunscreen (emphasis is mine):

  • Use a sunscreen with a minimum of SPF 15 and a maximum of SPF 50;
  • Make sure labels list UVA and UVB (or broad spectrum protection);
  • Avoid products containing oxybenzone and retinyl palminate if you’re concerned about potentially toxic chemicals;
  • Choose lotions versus spray sunscreens for a more evenly distributed protection.
  • Remember to apply at least 2 ounces of lotion (about a shot glass full) and reapply often. The sun breaks down the ingredients in sunscreen that protect your skin. Experts recommend reapplying every two hours, or after swimming or heavy sweating.

Not only is anything over SPF 30 a waste of money, it can actually contain more harmful ingredients. With the new labeling requirements, it’s easy to spot the ones that say "broad spectrum". I do like the convenience of the spray, but only because I use to not like having the lotion on my hands and nowhere convenient to wipe them. Now that I can use every drop of coverage possible, excess just gets wiped off on my arms and legs. You all should know what a shot glass looks like. Imagine it full of your fave booze. That’s how much an adult needs to use with EACH application.

OK. You don’t like sunscreen. Fine, I get that it smells, is sticky, can make the kid’s eyes burn out of their heads, attracts dust, is full of poisonous shit. Well, whatever. No one ever said "sun protection" comes in applicable sunscreens only. Here’s your chance to show off your Scarlett O’Hara straw hat or to take a stroll with a parasol or wear a flowy beach cover-up. I have versions of all of those and I can’t tell you how freeing it actually is to 1) not have to do my hair just to go to the pool or beach; 2) get to use the silk parasol my husband had personalized with my name from Disney (and receive compliments everywhere I go with it) and the luxury of shade when there is none to be found (soccer field! track field! local car show! parade!); and 3) keep my fat ass under wraps.

I am definitely in the minority here in Hickville, USA. I guess I would have to call myself progressive when I’m surrounded by a sea of farmer’s tans, exposed bra straps and tank tops. I had to make this lifestyle work for me. I’m aging and my children are so young. I want to see my daughter get old enough she can sign my living will and put me away in a nursing home. I don’t want her to get married and have "In memory of my late Mother" typed in hindsight on the wedding program.

I honestly didn’t mean for this to be so long and I admit that about three-quarters of the way through, my bitch-and-complain sail lost wind, which explains why I started off so ranty and then petered out. To end this diatribe, I’ll share a quick exchange between my husband and myself from this weekend when we went to the local lakeside beach. Setting the scene: Me, sitting under our enormous sport-brella. Sparring Partner, sitting just outside of the shaded area next to me where I notice his back is getting a bit red in spite of getting an application of sunscreen.

"Hey, why don’t you scoot back a bit so you’re in the shade?"

"I’m fine. It’s not affecting you."

"If I had had lung cancer, and I knew you were smoking cigarettes when you weren’t around me, would you still say ‘It’s not affecting you,’ as an excuse to smoke?"

He moved to sit in the shade with me.

Your choice to not protect yourself may not directly AFFECT me, but it does have an effect on me. I care.

It’s Just One

With most of us experiencing early spring-almost-summer, it’s tempting to head back outside and soak in the sun without care. A coworker said she was outside this past weekend for about 20 minutes and sunburned her back. It was hazy that day, which is especially deceiving.

I had my third mole-check after I was diagnosed with malignant melanoma and while the last time I went scott free, today I am sporting a simple bandaid on my left forearm. I wait two weeks for the results of the biopsy.

I’ve had friends and family explain how they’re afraid to get their moles checked out. They have so many! They’d be covered with bandages from all the biopsies!

It doesn’t work that way. Sure, if you have lots of moles covering your body, then yes, you ARE at higher risk because your body is funkifying the pigment in your skin. But it’s not the one-hundred moles on your right shoulder you need to worry about. It’s the ONE that doesn’t look like the others that you need to have looked at by your dermatologist right now.

Me? I don’t have a lot of moles. I have ‘sun-spots" on my hands and I have a very faint pregnancy mask. My dermatologist loves me because it takes him just a couple minutes to examine my skin. That ONE he took yesterday stood apart. No bigger than a mark made by a Sharpie pen-tip and dark. He may have decided to take it just because I asked about it. Why wonder later, he said, so it’s gone.

After having had seven biopsies, I do have two major scars. However, they are both direct results of surgery, not biopsies. Scars are ugly, I’ll give you that. But radiation therapy and chemotherapy is uglier. Dressed up in your Sunday best lying on a bed of white satin and air-brushed to look semi-human even though you’re dead is Ugliest, even if you haven’t a scratch on you.

Ambivalence is My Middle Name

It’s funny how I don’t feel like updating here anymore. Every day several times a day I think, “Hey! That would make for a great blog post!” and then? Seriously. I haven’t written a great blog post since never. Speaking of which, I started blogging August 2005.

I have no idea why I brought that up since it’s October somethingorother. Which also reminds me, I won’t be participating in NaBloMo or whatever it’s called.

Did I just hear a collective sigh of relief?

My daughter still hasn’t pooped in the potty but she’s not holding it for five days at a stretch, either. She keeps telling me “next time”. In an uncharactheristic move, she also pissed her pants while sitting on my glider-rocker. As I was stripping her down for a quick belly-button-on-down bath, I asked why she did it.

“It was an accident, Mommy! I’m sorry.” …. dramatic pause … I love you.”

I bought a couple tuttu skirts from Target thinking they’d be a novelty. However, Aitch has become so enamoured with them, I went and bought a couple more. She has worn one at least every day now. When it’s cooler, she’ll succumb to the addition of leggings, but it’s like trying to wrestle a cat into a pillowcase.

I went back for a three-month follow-up appointment with my PA. I need a refill of the paxil and ambien. The thing is is that I didn’t really want a refill of the ambien because I was anticipating my evenings just so I could TAKE the ambien. He said as long as I’m able to get up in the morning and feel rested that I’m taking it as I should. And then we talked more about my depression. Actually he asked why I thought I was depressed. I told him I wasn’t really sure, but that maybe it was the miscarriages and infertility or the pregnancy with Aitch that I was sure was going to end with a dead baby and then the loss of my job after ten years and then the cancer. Oh, and let’s not forget my son’s ADHD which makes him do things that make me so angry at everyone and everything that I’m sure my fury will result in one of those rare cases of spontaneous combustion and the only thing that will be left will be a pair of hopefully fabulous shoes and a singe mark on the ceiling.

I’m sorry. What was the question again?

He suggested, as many of you did, I seek counseling. I told him I would think about it, because you see I am still in denial. Enough so I didn’t pick up my refill of paxil and ambien. At least not yet.

Looking Good

Aside from whining about not being able to enjoy the summer and sun as much as I use to, I actually am being proactive and getting out with the kids when I can. I happen to have this week off from work which coincided with summer actually making an appearance (heat index today of 105-110 F). That means trips to the local city pool or even hitting the road for an hour’s drive to a water park.

This spring I bought a new swimsuit. I’ve worn it now a couple of times to the pool and to say I feel conspicuous is an understatement. The other day I sat at the edge of the baby pool while Aitch played and another mom sat down not far from me. She had on a cute bikini and I thought how lucky she was to not only have a svelte post-baby body but to let the sun’s rays soak into her skin for that healthy looking tan. Then there I was with my swim skirt, rash guard top and large-brimmed hat. I wondered briefly if I could pull off the celebrity-in-disguise bit, but realized pretty quickly no celebrity would be at the delapidated city pool.

Yesterday I took the kids to the water park. Aitch wanted to wear her “princess” swimsuit, a Target purchase quickly made so she’d have something to wear for swimming lessons at the Y a couple months ago. I hate it because Ariel is emblazoned on the front, but it was cheap, she liked it and it would never see the light of day. I had already ordered a swimsuit to wear outside, which she did at the water park. I told her that I had already packed her swimsuit and we couldn’t wear “Mermaid” anymore (time to hide that sucker!).

I’m glad she’s too little to have noticed all the little girls (and babies!) dressed in tiny little swimsuits. Even bikinis on the infants! Really?? Here she was in a long-sleeved rash guard and the only girl wearing one. My son has a rash guard as well, but it’s not unusual to see boys wearing them. I had one parent ask me where I found the girl’s rashguard as she had a niece who easily burned and I gladly shared that I had ordered it from Land’s End.

When we got home after spending a few hours at the park and took our baths/showers, I was actually happy to see that neither child showed signs of having been in the sun and water for the afternoon. While I do miss getting a tan, even I was just as pale as I was when we left the house…except for one area: my upper chest. My swimsuit covers me to my neck and I had a hat on, but the shallow scoop-neck left uncovered an area that I never thought to add sunscreen to. It’s not burnt, but there’s color. And that color is a reminder that I wasn’t as deligent as I should have been, but now I will know for next time.

I ordered my swim top from Girls4Sport (G4S). While they have swim tops that are traditional in coverage, they also carry short-, three-quarter and long-sleeves. I bought the three-quarter ringer style and am very happy with how it looks and performs. It took an extensive search to find rash guards that weren’t plain looking AND that had a built in shelf bra. How awesome are these UPF50 fabrics?!

(This is the style I got)

 

(This was my 2nd choice)

Here’s how my kids looked at the water park:

As I mentioned, I bought Aitch’s suit from Land’s End. Of course, they are marked way down now, but this is her top in green batik. Her skirt in tide green, while the pattern was not marketed as “coordinating”, I purchased because the colors were similar and I liked more of a quirky look.

The swim trunks on Doodicus were from Target. I think the rash guard was from Old Navy. I got these last year before I understood the importance of the UPF so I have no idea if his shirt is rated. I will be ordering him something I know has proper protection for next year.

I’m Tired of Being “One out of X”

My sister, who I haven’t seen for about six years, is visiting this summer with her kids from overseas. They live in the Middle East and her oldest daughter is in her tweens. My sister asked that I order a swimsuit that they picked out on-line that consisted of a rash guard and board shorts. Conservative, but not nearly as conservative as the one she packed with her.

I ordered the suit and then in a bone-head move that could only be contributed to being the daughter of a woman who is slipping swiftly and surely into senility, I’ve lost the shopping bag with the suit in it.

I KNOW, RIGHT?!!

I offered to take her shopping so we could find something else, but I was reminded it had to go to “here and here!” or else she’d have to wear the traditional swimsuit. My niece was rolling her eyes and giving me the neck-slashing signal behind her mother’s back, a “no way in hell am I wearing that!” move. I told her that she won’t feel too out-of-place. My swimsuit also went to “here and here!” on me, “because I can no longer be in the sun,” and Sparring Partner, hitch-hiking on the conversation corrected, “no, you don’t want to be in the sun.”

With guests in the house, I could only change the subject. But now I’m rerunning what he said in my mind and getting angry. Does he not realize I had skin cancer? Does he not realize that I will probably get it again, only sooner with sun exposure?? Does he not realize that after 40 years of exposing myself to the sun’s rays, I have to hope that I can spend the next 40 avoiding them?!

For the past several years, I’ve been dealing with shit statistics: “Infertility affects 1 in 6 couples,” and now I have this to contend with, “Malignant Melanoma kills 1 in 7 diagnosed with the cancer.” It was hard enough explaining to him how I felt being part of the first group. Am I going to be beating my head against a brick wall on the second one?

Unhealthy Thoughts

Upon seeing a new post from me today you might assume it’s one about Father’s Day or our 14th wedding anniversary (which will be tomorrow). Maybe an addendum to multi-installment posts from last year at this time, which were about my solo trip to Boston to meet up with several bloggers?

But it’s none of those. What else could I possible add to what I’ve said in the past about Father’s Day or our anniversary? And my East Coast trip will always be a wonderful adventure.

Instead, I need to talk about how this summer has started off as a rather rude slap to the face. I’ve always looked forward to this time of the year as a vacation, regardless of how much I was working. Evenings were spent on the deck sipping lemonade (which may or may not have been infused with vodka) and I would spend the weekdays hoping the weekends were going to be sunny and hot so I could go to the pool, water park or the lake.

Last year, after years of putting it on my wish list for the family, we finally bought an annual membership to one of the small private lakes nearby. We spent several evenings last year on the sandy shores…actually more often in the shallows of the lake trying to keep Aitch from walking in over head with fearless abandon; and I remember thinking how this year it would be even more relaxing with the kids just a little older. I could sit in a chair and soak up the sun’s rays, acquiring a healthy, golden glow that had come so easily in the past. I loved seeing the tan lines of flip-flops on my feet symbolizing freedom, vacation, warmth, and care-free days.

Even though I’ve had nine months to get use to the idea that my summers will never be the same, it’s been a harder-than-expected adjustment now that the temperature has finally warmed up. I almost can forget the seriousness of being diagnosed with malignant melanoma until someone asks about my scar. When I tell them what it’s from, they get a pitying look on their face and almost always have a story about how their neighbor, uncle, co-worker, or cousin died from it. It’s then that I’m reminded with a thud that I can’t just walk out into the yard to pull weeds or water my new trees or mow the grass without hesitation, without preparation, without protection.

We installed an umbrella on the riding mower and I bought a full-coverage, long-sleeved swim top. Cans of sunscreen are tucked away by the exterior doors, garage, and in my van, just an arm’s-length away when I need them. I’ve bought a few hats for those times I expect to be in the sun for an extended period of time: parades, picnics, farmers market, antique fairs… and of course, the lake.

Even though I feel I’m pretty prepared, I’m not enjoying the first summer-like days of the season very much. When I got back from a late afternoon trip to the lake with the kids, I noticed faint lines on my feet from my flip-flops. What made me feel so happy before, now makes me nervous. I wore sunscreen and stood in the shade as much as I could while staying within close range of Aitch who still is fearless in the water, and we were out there for less than an hour. And last night, Sparring Partner and I set up the pool, and each time I wasn’t immediately needed to help SP with something, I stood in the shade of the house envious of my husband’s lack of stinky and sticky sunscreen and obvious sock tan-lines.

I hope that this first summer will be all I need to adjust to this lifestyle change. I also hope that I’ll get at least 40 more in case it isn’t.

Yeah! Yeah! Yeah! (boo!)

When I get the mail, I read who it’s addressed to and then who it’s from. Saturday there was a letter addressed to me and I groaned. Another rejection letter to rip up in front of my daughter who laughs hysterically every time. I can’t believe I missed out on my 15 minutes of fucking fame by two years.

Then I noticed the return address. Huh, that’s odd, I thought. I hadn’t applied for anything with my dermatology clinic…oh…OH! I knew with that letter that it was good news because bad news warrants a phone call. I ripped open the envelope to find a one page letter with four separate boxes of information. Two of the boxes were checked.

“No cancer was found…” !!! Yippee! I’m a bit embarrassed to admit that I sobbed in relief.

Here are those moles:

Inner Arm
Inner Thigh (aka The One-Haired Bastard)
Chest

The other section marked wasn’t quite as good, but not altogether bad:

“…an atypical mole – not 100% normal…” Dysplastic Nevus.

Of course I had to look up dysplastic nevus and really found nothing useful. I don’t fit the profile for someone at risk for dysplastic nevus, nor for malignant melanoma, but here I am. I tan easily and I don’t have a body full of freckles and moles and there’s absolutely no family history. My dermatologist told me during my exam last week that it would be easy to find unusual moles because I didn’t hardly have any. Also, dysplastic nevus usually means moles that are large and of different shades and margins, but this one? This bad baby was just a tiny little dot on the top of my foot. Of the moles biopsied, I was the least suspicious of this one:

Left Foot

Since my diagnosis of MM six months ago, I’ve seen updates from a couple of my friends about getting their moles checked. Whether it’s due to my diagnosis or not, I’m always glad to see that they are being pro-active. Get checked, even if there hasn’t been any changes to moles you may have. The worse part is you may have to get naked (I got to keep my underwear and bra on) in front of a young, good-looking doctor. And since I know many of you have had more intimate “exchanges” with medical professionals, this kind of visit will feel like walking around your home.

I already have my next appointment scheduled. Another six months. I can’t look at it as another six months I’ll be cancer-free. Instead, I can only look at this past six as such. The next six months will be once again full of uncertainty and worry. I just hope that I’ll luck out this next time and not have to get nekkid again for a whole year.

Six Months Later and I’m Right Back Where I Started

Yesterday was my six month appointment with my dermatologist. It was scheduled as a mole check, not necessarily a follow up to my surgery on the malignant melanoma in October. The scar has improved in appearance, but it still has the ability to make my friends pull back in horror and grimace when I show them. The edges are still rather purplish-red prompting the doc to suggest laser work to break down those blood vessels and lighten the scar’s edges if things don’t improve on their own in another three months. Due to lack of insurance – or a job – I’ll be stuck with red, angry margins for a while.

He then did a quick mole-check, literally scanning me from head to toe. He asked if I had any moles that I was concerned about and I showed him three, two of which he agreed should be biopsied, while the third was a wild card and he would biopsy anyway and eliminate it from future worries altogether. A fourth mole, a freckle really, on the top of my foot he marked with his pen to be sliced.

The nurse numbed the four areas quickly and efficiently and then he removed each and dropped them in their respective vials to be sent off to the lab. I should have the results by the end of next week. Then again, maybe not.

I was glad to get rid of the mole on my inner thigh (the one that looks the most suspicious). That fucker was growing a singular hair of bristle brush quality. I remember after my pregnancy with Aitch, once I could finally see that part of me again, the hair had sprouted to mythical proportions. I’m fairly certain a little boy named Jack was eyeballing it as a worthy challenge.

And now I wait again and hope for good news. My doctor was especially pleased when I told him that my swimsuit this year is one that covers me neck to hip and shoulders to forearm. A rashguard designed specifically for women with a built-in shelf-bra. Now I can stop taking those contortionist lessons that I had scheduled to help me apply sunscreen to my back with my feet.

Ten Weeks Later

I had what is probably my last post-surgical follow-up with the plastic surgeon today. I should note here that the other surgical oncologist never did schedule return appointment with him. That kind of makes him an asshole to me. On the other hand, that kind makes me an asshole as well as I didn’t call him out on it and darken his office doorway.

I didn’t really care for the plastic surgeon when we first met. He seemed a bit standoffiish and impersonal for my liking. However, over the past couple of appointments he has grown on me. My only complaint now with him is that each time I see him, he tells me something he should have told me at the last appointment.

Today he asked me if I was rubbing the scar. No, I answered, should I be? Yes, he said and I should get some silicone gel to rub on it as well. So now I wonder how long I should have been massaging it. Bah.

One side of what I should now call The Scar is still quite tender. As he poke and prodded that side he suddenly gave it a pinch on a particularly inflamed area. Once I climbed back down from the ceiling he told me that I had an ingrown hair and he had opened it up.

Now you see, he does sound like bit of an asshole, doesn’t he? But he’s direct and doesn’t try to schmooze and I think that makes up for everything else. He asked what I was doing for Christmas and when I asked him, he easily told me about his four children – mostly adult-aged but single – and how they would all be home this weekend.

I took advantage of him and asked him if he thought I’d be a good candidate for restylane to help my “smile” lines and the dark bags under my eyes. He wheeled his stool up close to survey my face and said, “You’re not too bad yet…” YET?!!

Ok, so he could have left off that little word. I still kind of like him.

Updated pictures are on my Flickr page.

Survivor

It was just a couple of months ago that I was diagnosed with malignant melanoma. It seems odd to even say or think the word cancer since in my case the diagnosis and the removal of it occurred within days of each other. In other words, could I really be a cancer survivor when I really don’t feel as if I ever had cancer?

Very shortly after I lost my job at the hospital two years ago, I found out one of my friends still working there was diagnosed with Stage IV breast cancer. They gave her six months to live. As of last week, she is still alive but in so much pain that she refuses to see anyone. The only treatment available to her at this point makes her violently ill and unable to function physically or mentally. Her family doesn’t know if she’ll make it through the holidays.

Last week we received word that Sparring Partner’s CousinP from Boston, the one who graciously gave up his free time to me while I was visiting there, was diagnosed with testicular cancer. We don’t know any more than that right now except that he has taken the news very, very hard.

S.P. told me I should give him a call and talk to him “about what we had in common.” Obviously, I understand where he was coming from but the suggestion was ludicrous because I just don’t feel as if I do have anything in common with him, just as I don’t know how to talk to my friend who is quite likely on her deathbed with cancer.

I had a cancerous growth. I had it removed. I don’t see myself as a cancer survivor and quite frankly, I’m sure many feel the same way towards those with this particular type of cancer…some might even say it’s a pseudo cancer.

I rarely think of it, except when I accidentally hit my leg against something or when Aitch demands to see my “big owie” (to which she always exclaims “Oooh! That’s a big owie!” and then kisses it to “make it better”). Sometimes I examine it while getting dressed. I stopped commenting out loud about how ugly the remaining scar is as S.P. would remind me, almost reprovingly, “The cancer was ugly. This (he would look pointedly at the hole in my leg) is not ugly.”

I appreciate his sentiment, but I guess I’m vain. The large scar seems to be the “pay off” for what seems to be a curable (for the time being) cancer; simply cut it out much like a rotten spot from an apple.

My friend with terminal cancer is a survivor, regardless of what comes in the next few weeks. My husband’s cousin will be a survivor because of the uncertainty he will face. If I am lucky (very, very lucky) my cancer will not return and I will never have to perceive myself as a survivor.

11 of 30: Bills, Bills, Bills

Now that NaBloPoMo is a third of the way over, are you just pushing the PGDN button on your keyboard while in your reader? Go ahead, you can admit it to me. I do it and I’m participating for heaven’s sake.

Working a decade in the healthcare industry has given me such an insight to the internal bullshit, especially the patient billing. EOBs (Explanation of Benefits) are not scary and confusing bits of paper to me. Now that I’m self-pay/private-pay/uninsured/underinsured I can easily understand why so many billed people get annoyed and angry and frustrated.

One of the clinics I use locally gives self-pay patients a 25% discount.  The hospital I had my surgery at in The Metro gave us a 20% discount. However, the hospital, my former employer, had a policy of giving a whopping 5% discount for self-pay patients IF paid within 30 days of the first statement. It would seem that in the past couple of years they’ve been under a bit of a financial strain, what with deciding to build a multi-million dollar expansion during the financial downturn and losing their asses SO when I received a statement from them, I found out that the “generous” cash discount offer had been rescinded.

Of course I’ll be calling to negotiate: 10% discount or I’ll pay $10 a month for the next couple of years. Of course I’ll be nice. I can be nice. Stop looking at me like that. I can too.

I also called another clinic about a balance from Doodicus’s visit to find out what kind of discount they offer. The person who took my call countered me with the most ridiculous response: “We are a self-funded, self-employed clinic.”

“And I’m an unemployed, uninsured guarantor on my son’s account, so what?”

“We don’t offer a cash discount. We don’t get kick-backs from the state.”

“Neither do I.”

Really?? As long as that doctor sees any patient who has insurance, he (“he” as in “his business office manager”) is     negotiating discounts. This rep went on to tell me that they can set up a payment plan but that they have a minimum monthly requirement. I should have replied with, “Well, I have a maximum monthly availability and that trumps your requirement,” but I didn’t. I could tell I was stressing her out, so I told her once I get a statement we can figure out how to proceed. Never mind Doodicus’s visit was nearly two months ago already.

The other notable experience I had as an uninsured patient was just yesterday at yet another follow-up appointment with the surgeon (don’t have to go back for another six weeks!). Just as the nurse calls me back, I get halted by the receptionist who informs me that their business office manager wants to speak to me first. O f course I know what this is about. I get redirected to a tiny, windowless, torture room where the manager hems and haws uncomfortably while she pulls up my account on the computer, which she informs me has been “flagged.”

“Have you talked to anyone in our office about financial counseling?”

“No and I don’t need to.”

She stared back at me, a little stunned.

“Oh. Well, we normally try to work out something with our private-pay patients before their balance gets too out of hand and your account, which is over a certain amount was flagged because we didn’t have any arrangements in place.”

I wanted to tell her that it’s not my fault that no one from HER staff contacted me about the financial arrangements. The surgery was scheduled. It wasn’t emergent. Not my responsibility. I don’t work for the surgeon, she does. I also thought about telling her that there’s really nothing she can do at this point as she can’t deny me my follow-up visits which are all included in the surgery itself, but I didn’t. I just told her that when I finally get a bill, I’ll take care of it. She told me it was sent out on the 5th….it’s the 11th and I STILL don’t have it. Gotta love that outsourcing, don’t you?

Now don’t you wish you had clicked the PGDN button?

Earning a Medical Degree One Illness at a Time

You know, as soon as this whole business with my melanoma has blown over, I can’t help but wonder what other crap bit of luck is going to drop in my lap. Maybe I shouldn’t wonder too hard, hmmm? Especially since Sparring Partner’s dad has been feeling under the weather; or since my dad is recovering from a crushed vertebra; or since two year olds are prone to all kinds of accidents…

My second follow up with the plastic surgeon was a couple of days ago. I was looking forward to this one because it meant getting the stitches out of my foot. I had no idea that the stitches were causing me so much discomfort until they came out. My foot had healed up so well that they were ripping my skin back up again with every step. In fact I think they were in too long since the resident had to open a third set of pick-ups when the first two he tried were too dull to remove a piece of blue nylon that had become embedded under the skin.

Oh, you’re shuddering at the thought?? Trust me, I had a death grip on the exam table, nails dug in deep, and my head averted to keep myself from kicking him in the face as part of an automatic reflex to watching some one picking at the sole of my foot with a foot long pair of sharp tweezers.

The tagaderm (a transparent film dressing) is still in place over the donor site. I was told that eventually it’ll come off on its own and the site will still be red and raw. Funny isn’t it, how long it’ll end up taking to heal, huh? Another fact I wasn’t made aware of by the oncologist or surgeon. These were the EASY wounds.

As for the MM site? It’s still ugly, but getting better. It’s sore, especially in the morning, but at least the swelling in my ankle goes down by then. Oh, I didn’t mention that earlier, did I? Yes, my right ankle swells and gets painful by the end of the day. Apparently there was significant damage to the vessels and my lymphatic system needs to figure out a new way to move fluid around the site.

As for the good news, at least 80% of the graft took. I didn’t ask what will happen with the area that didn’t. I’d ask in two weeks when they asked I return, but I didn’t schedule that appointment. I walked past the desk without a second look. Sparring Partner suggested I go back in a month instead.

You’ll have to check out my “Cost of Healthcare” page. I’ll have that updated soon. Here I was just thinking a month ago that overall, our out-of-pocket expenses were way less than an annual insurance premium plus copays and deductibles. Alas…the kids didn’t need to go to college anyway. Look where it got me.

Instead of Pictures…

Maybe once it starts to heal up and not look like a giant eel took a bite out of my leg and left a black, festering wound, I’ll post pictures here. However, until then I figure it might be easier on the eye (and stomach) to just post the link to a new set I created on my Flickr account.

Yes, I have Flickr. Don’t you? And if you do, how come I’m not stalking you there as well?? Uppity asshole.

This is the link then. Now you have a choice and sometimes even the simple choices are really nice to have.

My Cancer: A set on Flickr.

I Did Not Escape So Easily

My follow-up appointment to my surgery was yesterday. I was SO excited about it because it meant finally getting the plaster splint removed, letting the surgical site heal, and just moving on. Bye-bye, Cancer! Pfffft!!

I was excited about finally getting to take a shower. Shaving my legs that were resembling a tarantula’s. Washing away the week of bed-ridden stink. Wearing shoes; REAL shoes, not Crocs (actually just Croc, since I could only wear one shoe). Returning the walker and the crutches.

What did I say earlier? Bye-bye, Cancer? Pffffft?

I wasn’t prepared – at all – for my appointment yesterday, which was a follow-up with the plastic surgeon. I guess what I saw on the bottom of my other foot was what I thought I would see on my leg. I was thrilled when the nurse started removing the splint without the doctor even there. She unwrapped the compression bandages and then carefully cut away the padding from my shin and eased the plaster cast from the back of my leg, pausing briefly when the gauze seemed to have stuck to the site.

She picked it away from what was holding the gauze: a staple. A staple that was connecting my skin to a sponge. There was a sponge stapled to the back of my leg. A round sponge. The staples pulled on my skin to create unnatural and gruesome wrinkles. I was shocked but fascinated. I took a picture and sent it quickly to Sparring Partner who was in the lobby with the kids.

The surgeon came in shortly and picked up the staple-removing pliers and lifted my foot to his lap. I awkwardly turned my leg so he could reach first one side and then the other, plucking at the staples as I bit my lip in pain. One of the staples was stubborn, he picked at it and I yelled OUCH! and quickly apologized as he halted the torture briefly to almost glare at me.

Finally the staples were out and I fanned my face with my hand. He asked if I was going to faint. I said no, that I had just gotten really hot. I wish I had fainted. The pinching of the pliers and the quiet “click” against the staples was sickening. He pulled the sponge away and a wadded mess of bloody gauze lay underneath. I turned my head away as he removed it. I’ve never shied away from gore, but this was too much.

When I looked again, he was examining his work and I gasped and said, “That looks terrible! ….no offense…” He ignored me and picked up a tiny pair of scissors and snipped an overhang of graft skin. I felt nothing. I said it looks like a shark bite. He replied he’s seen one and yes, the site does look like a shark bite; a very small one, he amended. Small. The size of my palm. I took another picture with my phone. And then I said, “So. This is what malignant melanoma can do…” He nodded sagely.

He cleaned the wound, added some ointment, which because of the depth of the wound, most nerves were gone and I never even felt, covered it with a pad, packed it again with gauze and wrapped it all back up again in a compression bandage. He told me I could shower. I asked what’s the best way to cover it during the shower. Oh, no, he said, you will change this every day and can leave it uncovered for your shower (!!!!). I’ll see you in another week, he said, and walked out.

I have pictures, but quite frankly, they are awful. I will post them, but not today. I am still trying to wrap my head around everything. I wasn’t prepared for being incapacitated for a week. But mostly, I wasn’t prepared to see what I have seen. I guess that’s what I get for thinking this whole MM went too smoothly for me: diagnosed and removed with negative secondary biopsy results. Smooth sailing…I knew I would have a scar. I expected something similar to what was on my foot. A vertical line or something less invasive. But to see that hole in my leg. Well, it upsets me even now to think about it so that’s why I’ll wait to show you another time.