Sunday, April 08, 2007

It's probably nothing

I guess I'll get right to the point.

The good news is I met the new oncology doctor on Friday, and he's great. Great. The man is a genius, and he's very open to my opinion and the way I think things should be done, and what I want and need as a patient.

Bad news is he thinks he's found a lump in my stomach, a lymph node that he believes may be the size of a small egg. We're both pretty sure that it's scar tissue from earlier surgery, but just to be safe, I'm getting a PET scan and a CT scheduled.

So, not sure what's to say. I am scared, even though I know that I probably shouldn't be. I should be just resting in the fact that this lump is very, very near my surgery site and that the news will come back at as nothing. Nevertheless, it is nerve wracking. I guess because this is my first scare, it's to be expected. I'm mad at myself for not taking more comfort in the fact that the probability is in my favor.

Ugh. All these emotions, all over again. And anger. Anger that this is my life. Anger that I have to do the dr. appts every three months. Mad that I still break out in hives when I have to go there. Mad that everytime I go, something like this could happen. It's like at any point it could all go downhill. And then mad at myself for all those feelings, mad at myself for feeling sorry for myself when so many others have it so much worse. Mad that my friends are dying and I'm complaining about a lump.

My oncologist and I talked for a long time about this- like 45 minutes about melanoma and what having it means. It's an aggressive cancer. And, unlike some cancers, it almost always returns. Sure, the chance of it lowers after about 15 years of no recurrence, but the fact is, it's not one of those cancers you can be pretty sure is gone. So, there's that. Then there's the fact that the only treatment once interferon is over is IL-2, and that's definately not a sure thing, either. It's a help if you're a healthy person, like I am. If you're healthy, it's about a 1 in 5 chance. But if you can't handle the whole treatment, which, let's face it, is tough, then it's only about a 6% chance. Not to mention the potential damage it can do to your heart, liver, etc. I'm not sure I'd do IL-2 if the melanoma returned. In fact, I'm pretty sure I would not. So, as my oncologist said, "when it returns," he says to me, "we can take measures to delay death, but not significant measures. Once it's back, life expectancy is 9 months. A delay of a few months or a year is possible, but there's really nothing we can do to stop it." That's a real slap in the face even on a good day. But a day when you've just found a lump, it's enough to make you crazy. And, by the way, you can just call me Crazy from here on out. I'm going crazy with all this to think about.

I'm checking into a vaccine that has had great success overseas, but is not available here in the U.S. Not available to humans, that is, but to dogs. From what I hear, the shot is about $60g's and pretty effective (1 in 4). So it's not like my options totally suck. I mean, I guess, at least there's hope.

That's about it. I'm obviously a bit down. But I know I can count on good news soon. And, this is good for me anyhow, to deal with these things. Good for me, but not easy.



Shannon said...

Hey Lori, just wanted to pop in and let you know how much I appreciated your comment on my blog!! Your words really meant the world to me...Thank you. And of course, I do know you--well, so to speak, as I regularly check your blog for updates too. I gotta admit, that I admire you and your very well expressed honesty and bravery too!
I hope like hell that this shitty ol' lump turns out to be a BIG nothing...definitely not stinkin' ol' mel rearing its ugly ol' head again!!
And hell are right is scary as HELL, but I can tell from your posts that you are one heck of a tough fighter; and no matter what happens you would give melanoma a HUGE kick in the ass!!

Wishing you only the best of luck & sending lots of positive vibes~

Carver said...

Someone on the MPIP posted an article for you to see if it was the vaccine you were considering and at the end it had information for contacting someone in Italy. Since you weren't getting much help from you request, I'm posting that contact information below in case you didn't see it. My suggestion didn't have an email but this one did and since it was in English I would think you could email the Italian contact in English if you don't speak Italian. I hope you aren't having a recurrence but as someone who is always zipping ahead to the B plan (A plan being no recurrence), I wanted to make sure you had the contact information. Take care from the friendly melanoma community stalker, moi.

For additional information, contact Giorgio Parmiani, Unit of Immunotherapy of Human Tumors, Istituto Nazionale per lo Studio e la Cura dei Tumori, Via Venezian 1, 20133, Milan, Italy. E-mail:

mlittle said...

Don't you just HATE it. Life FINALLY seems to be returning to normal, or some semblance of it anyway, then right out of nowhere... WHAM! (kind of like a car wreck ;) Something comes along to knock you back into that funk.

Damn, girl. I'm sorry you have to go through this. I hope you find out it's nothin' but scar tissue, or a practical joke from the ol' easter bunny.

Of course you're scared. You have every right to be quaking in your boots. Who wouldn't be? But there is absolutely no reason why you can't be like Robert S from the MPIP.... NED for 41 years at stage 3C.

Sending good thoughts and cyber hugs your way.


Ann Kowalski said...

Hi Lori, First I have to say that I love your blog. I also want to give you a little encouragement. I had a small egg shaped "lump" near my groin appear approx. 9 months after my original diagnosis
My oncologist thought it was a lymph node too. I was totally freaked out and figured that it had to be melanoma...How could it not be, it was right near where I had a cancerous node removed 9 months earlier. Well, It was nothing more than a fatty tumor. I had another one appear a year after that and it was nothing that time as well. I am NED 5 years now and I suspect that you will be able to put this new blip in the road behind you soon.

Take care,

Ann from Michigan

Anonymous said...

Miss M,
I wish that this wasn't happening to you. I can say that and mean it b/c the same thing happened to me, and I was just as shocked and surprised as you are. And, unlike yours will be, mine was a lymph node positive with melanoma. The good news is life does not end there, there is still more life to be lived, and I learned to deal with it the same whay I learned to deal with my first diagnosis. I know, either way, that you will too. It's difficult, but remember that God does not lay more on us than we can carry. And you will find, just like you did the first time, a peace inside of you where you can rest assured that things will be ok. All the answers are there inside you, you just have to find them. WE ALL know that you will.

kim said...

Lori Lee,
Scar tissue is my vote...It took 2 biopsies of the lump forming around my skin graft for me to calm down about it since the lump I had a year ago was a recurrence!
Diagnosis: SCAR
Yep. Both times and the darned thing is still getting bigger. I guess I have learned that scars can continue to grow.
And a lump can just be a lump.

Everything's gonna be alright.
Love you Sweet Girl.

Snobby Bobby said...

I'm always amazed by the girl I get to call mine. You're so upbeat even when you get news you might have some scar tissue :). You continue to inspire (yes, I said inspire) me on a daily basis.

I love ya, little monkey!

Thanks goes out to people like Shannon, Carver (glad you liked the pic), Melissa, Ann, Kim, Faith, Katherine, Lynda, Sarah, Mandy, Peter, Candi Faye, the list goes on...that come out of the woodwork and offer great advice and love.

Peter said...


This is really lousy - Just when you are doing so well, and hope that you are past the worst, something like this comes along and kicks you in the butt.

I'm not talking about the actual cause, or the diagnosis when it comes, whatever that might be, but the intense stress this must be causing you and Bobby. Particularly when you have been losing some of your friends to mel.

Good advice follows: Feel free to ignore as you will! Until you have the scan results, be calm, spoil yourself, don't over-react. Most important is to look after yourself and your mental state. Nothing else is important.

Jocelyn and I sincerely hope it is just a scar, or something else treatable. We are thinking good thoughts for you, and mentioning you in our prayers.

I know you will be fighting all the way, and admire you and send you all support. Please let us all know as soon as you get news.


Holly said...

Lori, as you NIKE running buddy and a fellow MEL Warrior, I just want you to know that you are in my thoughts! I'll run HARD for you tonight and hope that this lump turns out to be nothing but a bunch of scar tissue.

You have every right to feel crazy, angry, scared, and frustrated! Tell MEL to F*CK OFF and you just KEEP LIVING STRONG!!!

Stephanie said...

Miss M -

I've been following your blog for over a year now. Even people that you don't know are cheering for you and sending good thoughts and karma your direction. That's got to help get you through this next few weeks. It will BE OK!!!!


faye said...

What could I POSSIBLY add to this list of amazing and insightful comments. Ever since I've known Lori, I've felt really blessed and fortunate to be her friend. I see that a lot of people here 'get' how wonderful she is, too. I can only tell you that she is even better in person!

Love you Lori!!

faye said...

Hi Lori, Thinking of you today!!!! ...soooo much! Love ya!

Anonymous said...

Just try to remember that you are the awesome Lori Lee with the power to leap this hurdle. You have a reserve of strength, love, laughter, and vitality with your name on it - it's in's in us, your Gilda's family.
I love you and where ever this journey takes you, I'll be riding shotgun (whenever Bobby lets me).



I'm Too Young For This!