Sunday, June 03, 2007

Our Blessed Lady of Surgery: The Patron Saint of No More Friggin' Melanoma

So surgery has been officially set, and I get a little time off from school before hand, so I'm fairly happy with that. Yes, it sucks that this is what my vacation fund is going to, and it sucks that this is what I'm doing the first part of this summer, but such is life, I suppose. And considering what's going on with all the people around me, I really feel like I should be counting my blessings.

Just in the last week or so have I come to the realization of just how scary this surgery is to me. Maybe I knew all along and just didn't want to think about it, but one night Bobby and I were sitting, watching tv, and it just hit me that I knew why it makes me so nervous that it's so quickly approaching. When I started to talk about it, I got butterflies and that adrenally feeling like I do just before they roll me into the operating room. In reality, I know that things will be a lot better than my last surgery, and that I'll be in the hospital where meds will be available and I'll be able to recover well. My last surgery was the removal of all my lymph nodes in my right groin. The incision started about half way down my thigh, crossed over just above my hip, and stopped about 3 inches above the hip bone. They also removed my little pinky toe and a small part of my foot at the same time. It was, how do you say?, intensely painful, especially since I didn't have insurance at the time and had to do a "day surgery," which basically meant that after I came to, I had to get the hee-haw outta there. That meant getting out of the bed and into a wheelchair, out of the wheelchair and into a car, out of the car and walking into the house. Ouch. Yes, there were pain meds, but nothing really prepares you for walking (or should I say attempting to walk? more like dragging myself on crutches) just hours after they staple (87 staples, by the way) you shut. A full 10 on the one-to-ten pain scale. I didn't even know that pain like that could exist. Forget childbirth, if that's what it's like.
So there's something to be thankful for right there, kids- I won't be doing THAT this time around. I plan to use that to my full advantage, too, and to bask in the gratitude. But yes, I am a bummed about having to do this again. I'm also pretty bummed about the fact that I was just starting a half-marathon training program, and am running 3 miles fairly effortlessly these days, and now that's going to be shot all to hell. I really wanted this summer to be an opportunity to get back in the habit of working out 5 days a week, and I know what this surgery means for all that. My doc is hopeful that maybe I can pick up bike riding a few weeks after (I need to contact Holly about this, by the way), so that I can be up and moving and squashing the chance of a blood clot, and I'm all for that, too. But running has always been a real passion of mine and I'm sad that it's not going to be around for a while. I'm really sad, actually. And let's just say it, I'm pissed, too. I'm pissed even though I know things could be so much worse for me, and yes, I'm struggling with that, too. But since I'm being real, I'll just break it down for you.

I'm only out from Interferon 8 months, which has been about enough time for me to get things back together, to get to a place where I feel physically and emotionally like I'm finally back on track. And it's taken me all this time just to get my body used to running again, even though I do struggle with lymphadema and such, it is so much better than it was, and with the right tools, I've found it's even manageable. Now, now that I'm here, guess what? It's back.
That's just so wrong. I just want to scream (at who, I'm not really sure- or what?- my body???) "Leave me alone! I just want to live my normal life!" And yes, this is the reality of life after cancer- a constant maintaining of one's self, a constant "on guard" status. In reality, there is no life after cancer, there is only life after diagnosis, which means you do scans and you check yourself and you see docs regulary and you just accept that it could one day manifest itself again. That becomes a reality of daily life, that cancer could be back any day. But until it recurrs, I guess you just fool yourself into thinking that you did your time and you can get on with your life again. And if it happens, you'll face whatever comes when you get to it. Which is what I did. But I don't want this. I want to be able to work out and have a summer vacation and spend time away from work without having to live my life around cancer. I don't want to spend 6 weeks recovering from surgery, and then another who knows how many weeks trying to build up some sort of physical endurance again. For that year on Interferon of forced coach-potatoe-hood, I just packed on the pounds, even though everyone around kept saying, "You barely eat anything. I don't understand how you're gaining weight." Alas, I am a medical marvel. Part of that was how my body reacted to Interferon, and part of that was an infamously low metabolism that picks up dramatically when I commit myself to working out regularly. Interferon pushing me into pre-menopausal world didn't help with that issue, either. And now, I am scared of weight gain happening again. I know that sounds silly in the big scope of things, but this is part of my health, too, and I am tired of having so little choice in what is going on with my body. I don't even want to think about having to start all over, trying to get back to a normal physical state. And this isn't even normal. This is the starting over. After surgery, that will be the starting over from the last starting over.
More trivial things to complain about, you say? Sure, I've got them! I don't want to give up my favorite hobby and learn another sport. I don't want all of this damn money I've worked so hard for to go to something I care so little about. Life is too damn short. I want to live each day to the fullest without being confined to a hospital room or a bed! I want life without staples, without surgery, without 6 weeks recovery time.

And yet, most of that life is gone. I still grieve for that life sometimes, though most days I've accepted this new life, and can see the benefits of it, too. Would I trade all I've learned if I had a chance at getting my old life back? Today, yes. Yet, once again I must acknowledge how lucky I am indeed, to have all that I have, to be dealing with one tiny lymph node instead of other things, to be where I am today, to have the support that surrounds me. And I've committed to living life fully, no matter my circumstances. I'll do everything I can to live as normally as possible while I'm recovering, and I'm pretty sure that won't be as bad as I'm making it out to be tonight.


That's all for now, kids. Tune in next week, same Bat-time, same Bat-channel.

And please don't forget to keep Sarah and Shannon in your thoughts and prayers.


-L

6 comments:

Kari said...

Thanks so much for writing this blog. It has influenced my commitment to limiting my exposure to the sun by using sunblock and staying out of the sun as much as possible. More than anything else I've read. You are a gifted teacher in this regard. I sincerely hope the best for you and am wishing with all my might that everything goes as smoothly as possible.

Carver said...

Dear Lori,

I have the utmost respect for you and your ability to spell it all out so honestly. Yep it really does suck. I can empathize with so much of what you're saying and I hope that after you recover from this surgery you will be able to run. Running hasn't worked out for me post LND but I'm turning 50 this year. There's a man who posts some on the MPIP who is closer to your age and he had to have groin LNDs on both sides due to a recurrence that crossed to the other side and he has been able to resume running. So there's hope. I hope against hope you can resume all the good things in your life.

I can't believe they do the LND and amputation as a day surgery when people don't have insurance. That's criminal. I had the SNB and WLE as an outpatient surgery but not the subsequent groin LND which was much worse and did require a hospital stay. I'm outraged that you went through that and got sent home the same day. I am glad you'll be in the hospital during recovery this time. Makes a huge difference. BTW, I had a baby with only tylenol for pain relief and for me walking after the groin LND was much worse than that. That's why I can't believe they sent you home the same day. GRRRRRRR.

Take care of yourself and know you have a lot of people sending out good thoughts and prayers for you.

As ever, Carver

stephanie said...

I can relate to what you are saying about going back and forth emotionally when dealing with the "post diagnosis" stuff. One minute I look down at my scar and think "I look terrible, I will never be as good as I was before I had cancer" then the next minute I am thinking "Damn, I'm lucky to just be alive right now - it could be so much worse". Then I feel guilty for even thinking about my appearance.

One minute I want to "live life to the fullest" the next minute I just want to enjoy the simple things in life.

Like you, I just want to feel "normal" again. I feel so frustrated with all of the skin checks, biopsies, constant worry about it coming back - I just want to be ignorant about it all.

Then I tell myself that these procedures are keeping me healthy. I remind myself that it is one stetp towards being healthy again. I am doing the right thing by taking care of business now.

Will life ever be the same again? No, but it would have changed anyway without the cancer. There is one thing constant in life -- change.

But in the same vein, you can think "Will life always be like this?" No. It will change again.

Someday - it may not seem like it now -- but, there will be something that comes along and knocks this cancer off the map for us.

You've been through hell. Your last surgery will make you stronger and better prepared for this one. You will walk in that hospital a better prepared, stronger woman than you were the first time. Just foucs on doing what you need to do. Everything else will fall into place.

faye said...

Lori,

I have thought so much about how your plans have been wrecked by this, and I'm so sorry. They weren't just plans, they were the important kind of plans that scream, "FINALLY!" "A pay off for all this shit!"

I know how you've been holding on to thoughts and plans of this summer, how part of the reason you didn't apply for summer school was b/c you would be "living life to the fullest" this summer, vacationing and relaxing...and you've said that you only in recent years learned to "relax and do nothing," too. Is it wrong for me to be pissed off at the timing? Obviously, more than the timing, but especially the timing, I guess.

I know it is naive for me to say it doesn't seem fair, b/c what is fair anyways, and what do we really know about this transient existence, this illusory world, anyways? But, I guess I can't help being so human and wanting to scream at the universe that this is so fucking unfair.

At these times, I think of my brother who is severely disabled, which has nothing to do with you, really, but enters into my own head as I try to figure out the universe, especially watching you go through this untimely trauma, all the time feeling that you should feel guilty b/c your situation may not seem as severe as someone else's...for my whole life, I hated myself for being the 'ok' sibling when he has never in his 22 years gone to the bathroom on his own or been able to speak to express a single emotion...and, maybe b/c hating myself became intolerable, but I realized or decided that I must figure out how to suspend judgement, not just with him, but with everything..Trying has been easy. Doing it is so impossible. And, here I am, somewhere in the expanse between who I want to be and who I actually am. Shockingly human.

But you are Lori, and you, often without even knowing it, approach life with much more grace than that. Enough grace (and grits! :) ) to share with us in honesty. The sharing of your journey is a gift to all of us who read you and know you.

They say that how "functional" we are does not even matter until you put major anxiety into the picture--that is when we see the true colors...And, here you are, facing such a major anxiety producing series of events, from the initial cancer diagnosis, to feeling that you were "waiting," to this...And, the bottom line is that you're still an amazing person that anyone is lucky to know.

Peace in everything,
Candi

Anonymous said...

Yours was the first blog I read when I first faced the prospect of a life with melanoma and was desperately trying to understand what was happening and how other people approach it. Despite this fucked up situation, your strength, humor and determination are what define you and has left a lasting impression on me. I am sorry your body has to take another surgery, but I know your spirit won't bend. I am thinking about your speedy recovery.

Anonymous said...

I, too, found your blog on Google when I learned past December I had melanoma. You inspired me so much, everytime I felt like crying and giving up, I thought of your phrase ''you're living with melanoma, not dying from it''.

It is sometimes hard to live with it, true. And I haven't been throught as much as you have. But from what I've read, I am confident you will be stronger than you were when you had your first surgery. You'll just be fine.

Maybe you won't be running for a few months, but hey, you have a whole life ahead to catch the lost miles.

Good luck.

i2y

I'm Too Young For This!