Friday, April 13, 2007

Pitty-Party Interuptus

Author's NOTE: In the interest of full disclosure, I am posting this email that I send to my MPIP List because I realized that this is one of the realities of my life that I try to keep private. I'm not always the happy, go-lucky, upbeat Cancer Survivor/Triathlete that you see here. But I suspect you guys already *knew* that... You are all pretty darn SMART that way! Still, it's a side of my *survivor ship* that I tend not to share with anybody other than fellow survivors.

I hope this post can serve as a "been there, felt that, still feeling it now" for those fellow Mel Warriors out there who lurk out there.

I'm with you guys, I am you guys .. I just happen to like to swim, bike and run allot too.

LiveSTRONG! Holly

So I am coming up on my 2 year check-up. This year has not been quite the year I expected it to be. I guess I thought that once I finished Interferon, everything would be "simply glorious" and I would go back to Life as I knew it, only better!"

Not quite...

Since I finished the Interferon in May 2006, I have struggled with my hormones and my weight. I have gained about 40 pounds, missed multiple periods, gone through they symptoms of early menopause (night sweats, hot flashes) added two more doctors to my roster and after a whole lot of thyroid testing - been diagnosed with Polysystic Ovarian Syndrome (PCOS) (which I am relieved to say seems to have nothing to do with Melanoma or the year of Interferon) and started treatment for PCOS. My running pace is slower now than it was on Interferon!! Chalk that up to the extra 40 pounds of weight I am carrying around these days. Weight that is "very slowly" coming off but not without considerably effort.

Now, coming up on the latest Derm visit and ONC visit and test, I find myself with an "blister" that I can't explain.

At first, I was convinced that it is a blister from the seam of my bathing suit. My other clothes don't rub against the spot in general so I don't imagine that my shirt could irritate my skin enough not to let this blister heal. In the last two weeks it has gotten less swollen and less
red but it's still there.

I know the drill: Call the derm earlier than planned for my follow-up and have them check it out.

Still I will feel stupid AND at the same time very relieved when it turns out to be nothing. I'll be even happier when I get the latest round of CT scans done and I can say "2 years NED".

I am an optimist, overall, and I am trying to find my "new normal" but lately I find myself mourning the "Old ME" and feeling a little cranky that I have so far to go to "get back" to my old state of health and fitness.

BLAH ... Holly's Pitty Party is over... I'm still here, that alone should be enough. I only wish that Kim from Iowa, Heather, Rob in VA and so many others were still here too!

Even when you are N.E.D (No Evidence of Disease) there is this nasty side effect that come with any Cancer Diagnosis. The side effect is "Necessary Vigilance". Every new spot, every unexplained ache, pain or odd symptom must be acknowledge, investigated and ruled out.

If you are lucky, you find a team of doctors who like you and don't mind "ruling out the possibilities" if you are not so lucky, you get a team of doctors who roll their eyes and run the tests but call you "difficult" or high maintenance. If you have the latter, I say "Find a new Doctor! I know I have done that once already this year.

Melanoma Sucks!!!


kerihadley said...

i could never know the constant worry but am reassured at the constant vigilance.

thanks for sharing, hope it takes the weight off you shoulders to get your worries out on "paper". We love you and are all here for you even when you're "cranky".

Carver said...

Hi Holly,

I responded to your MPIP post and this may be repetitive but I wanted you to know that I don't think it's a pitty party for you to acknowledge what sucks about being a melanoma survivor. Yep, it's hard to see so many good people that don't survive this disease and it puts things into perspective. That said, having our lives changed in ways we don't expect sucks.

I'm older than you are (turning 50 this fall) but I expected to get back to my pre-melanoma life fast. I am greatful for what I have but that doesn't mean I can ignore the downside of what being a melanoma survivor means. Your post resonated with me and I think you are very brave and exemplify living strong.
For Me you said so much with: "I'm with you guys, I am you guys .. I just happen to like to swim, bike and run allot too."

I hope the blister will come back benign and will be sending out strong vibes for you. I hope you can skip feeling stupid when you get good news because being vigilant is smart. I'm glad you found a new doctor when you had one that didn't work for you. Best of luck with your 2 year round of appointments and scans. As ever, Carver

Pem said...

There are some good books about finding a new you instead of trying to go back to what was. I like Arthur Frank's The Wounded Storyteller. I'm not a cancer survivor but found cancer survivor books useful as I worked through another kind of healing