Melanoma Moments

Wanted: Participants Needed for On-line Study

Sue — Thu, 24 Jan 2008 16:00:20 +0000

From the MPIP board: The University of Pennsylvania is working with an international consortium of melanoma researchers called GenoMEL. The project is being led by Julia Newton Bishop of the University of Leeds, England. The study examines two key questions: How do people interpret their risk of melanoma and what protective measures are acceptable to them.

Go to www.genomel.org to complete the survey. Thanks for helping out!

I took it (takes about 20 minutes or so), and am curious to see the results.

Recurrence fears

Sue — Mon, 21 Jan 2008 19:53:45 +0000

Even though the surgeon told me that recurrence rates for someone in my circumstances is 5-7 percent, I can’t help but worry. Especially after reading about so many whose mel recurred years and years after the initial diagnosis on the MPIP board. Yikes.

So it looks like I’m going to go from being seriously lackadaisical about my health (if it ain’t broke, don’t fix it) to being downright paranoid…

One way to get over white-coat syndrome

Sue — Wed, 09 Jan 2008 16:55:07 +0000

Not my favorite way, but with all the doctor visits I’ve been having lately, I should get over my white-coat syndrome terror of they-who-wear-stethoscopes!

When my regular doc’s take-Advil-and-take-it-easy advice had zero effect on my screwed up non-melanoma knee, I went to DH’s chiropractor to see if he could work some magic on Monday. My knee still hurt, but my back felt fabulous! Then yesterday it was way worse, like I couldn’t make it all the way down the driveway to get the mail.

But today, knock on wood, the pain finally seems to be backing down. I was getting worried about stressing out my mm leg and popping the scar open! And of course, still lurking in the back of my mind is “bone mets. Must be bone mets.” Saw Dr. Joe again and got cracked in about 20 places, lectured on my bad posture and non-ergonomic workspace, and inundated with ortho pillows to try to keep me from killing my back slouching around in my favorite chair.

I’m really hoping that with icing, exercises, and rest it’ll back to normal by Sunday, because I have to go to a conference in Seattle next week and hate to think of trying to hobble around a convention center.

So, tomorrow I have the eye doc, then Dr.s Joe and Tanabe (surgeon) on Friday. Then hopefully I will be doctor-free for a while. No offense to the docs, but I’d really, really like that!

Scans revisited

Sue — Fri, 04 Jan 2008 19:30:22 +0000

In a comment in the below post, Amy asked if I was considering a PET scan even though the nodes came out negative, because there is a chance it could have spread via my bloodstream.

About getting scans: I am agonizing over that (see this post). I will talk about it again when I see the surgeon next Friday, but he strongly advocates not scanning, even if it was in the nodes. I want scans, particularly since my friend’s husband had negative nodes, then came up stage 4 two years later–it spread via his blood to his lungs, then moved on from there. It’s rare, but it can happen. When it happens to someone you know, the fear is even greater.

So, I’m not too comfortable with “watchful waiting” and three-month derm checks.

Plus, I have the feeling that I’ll turn into the world’s biggest hypochondriac and think every sneeze means it’s back. Already a sore knee got me thinking about bone mets.

If he stays adamant about no scans, I may have to switch to another doc, even though I really, really like this guy. I just think it’d make me crazy not to at least have a baseline and yearly check of some kind other than a regular physical and derm checks. Or maybe my regular physician can order these? I’m not sure how this all works.

Lies, damn lies, and statistics

Sue — Thu, 03 Jan 2008 14:53:02 +0000

But in this case, I’ll consider the survival statistics for my melanoma situation to be true, because they’re awfully good. First, the staging. The primary tumor is T3a, node status is NO, distant metastasis is MO.
Which puts me at Stage IIA, a most excellent place to be, especially considering where my mind was putting me yesterday.

The five-year survival rate for people in my situation is 97.0%, and the disease-free survival rate is 93.3%. Doesn’t get much better than that. Everything drops precipitously if mel has spread to the lymph nodes. But mine didn’t. Oh thank you powers that be!

Can’t even begin to say how good it felt to wake up this morning smiling and disease-free. I wish I could bottle this feeling.

Life is so incredibly precious, and I plan to enjoy every minute of it I’m being granted.

Sue, meet NED

Sue — Thu, 03 Jan 2008 02:42:22 +0000

Talk about a whiplash day. I was just here in my home office cleaning up a few last things for the night when my phone rang, and for some reason I answered it. It was Dr. Tanabe! With the results!

Drumroll please….

Lymph nodes negative
Excised skin negative

I have met NED (no clinical evidence of disease), and I think I’m in love!!!!!!! This is a double-fudge brownie with hot fudge and whipped cream and sprinkles Woo Hoo yahoo holy &*()^%$ OMG I am so happy and screaming and crying for joy night. I can’t wipe the smile off my face.

Thank you Dr. T for the best anniversary present ever (today is DH and my 15th anniversary)! DH and I are laughing, and crying, and laughing again. I know we still have to pay attention and things could change. I remind myself that Joe’s lymph nodes were negative before he went straight to stage IV. Anything can happen with this horrid freaking beast of a disease.

But my survival odds are looking pretty damn good right now.

So cute: My sister called and left a message while DH and I were out for our celebratory dinner. She goes, “Woo hoo!! Just called to say Woo Hoo!” Feels so amazingly good to laugh again, and everything’s good for a laugh right now.

Woo hoo!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Just shoot me now

Sue — Wed, 02 Jan 2008 17:51:57 +0000

OK, this really will be my last “waiting for SNB results is making me crazy” post. I finally had someone return my call to the surgeon’s office. She said that he would discuss the results with me at my post-surgical appointment. Which isn’t until the 11th. Why did he say the results would be back in 10-12 days if I wouldn’t know about them until a month later???? I took it to mean that I would get the results. I couldn’t give a rat’s ass when he gets them. There was never any mention of having to wait until my next appt. I could swear he said he’d call as soon as they were back. I am so pissed I can’t see straight.

I am trying to readjust my thinking. You know, first I could put it out of my mind (sort of, a little) by telling myself that I wouldn’t know for 10-12 days, so just live life until then. Then after Christmas. Then, you know, things are probably backed up, so after New Year’s for sure. Now I have eight more &(*!@) days to sit and worry and wonder what ifs and research too much and make myself crazy.

At least I can stop carrying both phones around with me all day, every day, anticipating/dreading every time one of them rang.

And I can’t help but think that if the results were good, they would tell me over the phone. I have no idea if this is standard procedure or not–and if it is, I sure wish he would have told us that. Which he did not. And frankly, I’d rather hear whatever they may be at home, and have some time to sit with them, be they good or bad, before talking options. And should the news be bad, I do not want to break down into a raging lunatic in the surgeon’s office. Much rather do that in the privacy of my own home, thank you very much.

So, I’ll be living in limbo, a little less optimistic and a lot more freaked than I was earlier today.

Damn!!!!!!!!!

On a positive, I hope, note, I did get an appointment with my PCP to get my non-MM leg checked out today, so maybe I can at least get both feet back under me in a literal sense, if not a figurative one. Of course, my brain being the disaster hound it is, immediately went to, “sure hope the knee pain isn’t the melanoma metastasizing in my leg bones.” Which I am sure it is not. But I can’t shut that voice up, either.

Just spoke with DH, and he says he distinctly remembers the doc saying he’d call us as soon as the results were in, too, both in the consult and post-surgery while I was still out of it. I am definitely getting a digital recorder to bring to the next appointment. DH was the note-taker, but I think he gets more freaked out than I do.
I am so disappointed, no, that’s the wrong word. Let’s call it disheartened. Like someone just threw a giant lead coat over my shoulders.

Depressed

Sue — Tue, 01 Jan 2008 14:46:40 +0000

I had a huge crying jag breakdown last night around 2 am (not sleeping well), and woke up really, really down. This is not how I want to start 2008. I think hormones are mixing with anxiety and coming up with an emotionally toxic brew. Part of the problem is that, just as I was starting to get back to normal mobility-wise, something went bling in my left knee on Saturday–I didn’t whack it, or twist it, or anything. It just started hurting. Feels like an icepick under my kneecap every time I take a step. Of course, my regular doc is closed until tomorrow, though I doubt there’s much she can do anyway. At least I had one day of being able to get around like a normal person and take my Augie dog for a good walk. Have been trying to lay low and get my non-melanoma leg back since, which is not helping. Sigh.

Realized Monday that my surgeon won’t be back from vacation until Weds. So, hopefully I’ll hear something tomorrow.

It’s supposed to rain, sleet, and snow today. Perfect for the mood I’m in. And I think we’re going to see Atonement this afternoon, which should be good for a non-self-pity cry. I hope it’s half as good as the book was.

Write a message for New Years Eve

Sue — Sun, 30 Dec 2007 23:00:51 +0000

Someone on the MPIP bulletin board just posted this from AP:

“For the first time, anyone can get a message printed on a piece of the multicolored confetti by visiting the Times Square Information Center or by using the Internet to type a message on a “Wishing Wall Online” – http://tinyurl.com/2c5efd.”

I’m going to send one for my fellow melanoma travelers. What a great idea.

Questions to ask yourself

Sue — Sun, 30 Dec 2007 00:03:41 +0000

Saw this on a listserv and wanted to put it down here so I don’t forget it:

Questions to Ask Yourself, Regularly

What am I resisting?
What is the lesson here?
Have I been here before?
Am I losing energy to this?
Am I holding on to something I need to let go of?
Am I in the present?
What do I need to do now?
Who`s in control here?
What is my responsibility here?
Am I at peace with this?