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GIST Support International - It's OK When You Don't Feel Up
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It's Okay When You Don't Feel Up

by Louise Ladd

Louise wrote this letter to her listmate friend who was feeling down...

 
Sue, I haven't used  your new drug so I can't help you with information about it, but I have many years' experience with fighting Gist, and I know how really down you can get at times.  I've had to deal with some bad set-backs, the most recent one last fall, and boy, there were times when I  wondered how I could escape this earth with the least amount of trouble, and many more times when I was scared to death and couldn't bear the idea of not being here for my family. 

Thank heavens, those feelings departed, and I'm still around, battling away, and having some good times too.      My tumor ruptured from my small intestine 12 years ago this coming July 4th.  It's not only the country's birthday, but it was also my 54th birthday, and we were on our way to visit my daughter and granddaughter, to  watch the fireworks with them.  That night, the fireworks were all inside my belly, as you can imagine.  The pain was more than I'd ever experienced in my life.

With only one surgeon on duty that holiday night in that small hospital, they didn't get around to operating on me until 3 AM and by then, they tell me, the peritonitis was so bad I almost died.  Then this past fall I collapsed from side effects, mainly edema, out of control with Gleevec, and they tell me I almost died twice during that time, before I woke up in the hospital.  I have no memory of the first week or two, thank heavens.  But I sure was glad to be back with my family, who were simply wonderful, staying with me almost around the clock.

So I've almost died three times.  That's a big idea and often I can't quite wrap my mind around the fact.  You think you might be facing death, and a shortened life.  I know exactly how you feel about leaving your babies... even though mine are adults now, they still need me, and my 6 grandchildren need me.  I don't want to leave them, or Doug, who has taken care of me all these years.  He needs me too.  You and I both have strong loves here, and we can get very unhappy facing the idea that we might not be here for 90+ years, like my mother and grandmother.  I know what it is to get deeply sad, really deep-down depressed, about the idea.  I want my full 90 years, and maybe more, but sometimes I've accepted the fact that I won't have my full term.  Other times I get sad, and mad.  It isn't fair, not at all!

But I try to remember one fact: when they decided the mysterious lump they'd removed that terrible 4th of July night was cancer, they called it leiomyosarcoma (LMS), because, outside 1 or 2 labs, GIST wasn't even known back then as a separate disease.  And the life span for LMS, the only facts I could find back in those pre-Google, pre-computer-in-every-home days, was that 9 out of 10 people did not survive 5 years.  But I decided that I would be the 1 in 10 who did live 5 years and beyond-- I'd do anything to stick around until they developed a magic pill that would take the tumors away.  So I had one operation after another, one "procedure" after another.  And by golly, in less than 5 years, they announced Gleevec.  My tumor was re-tested and I had GIST, which very often responds to Gleevec, not LMS, which, unfairly, doesn't.  Most of my LMS friends are gone now, I'm sad to say, but 11 3/4 years later, I'm still here.  It's a miracle.

My miracle is a pill, too, not an IV drug, so I just pop a few pills instead of sitting in a chair for hours while the IV drips into my veins or port.  And there are lots more drugs behind it, if or when it stops helping, as you've found out.  Maybe one of those drugs that's still in the lab, one we don't even have a name for yet, is the one that will work on your tumor.  If it could happen to me, why shouldn't it happen to you?

Hope is hard to find in the dark, where you're groping now, but easier if you turn on the light.  Click!  It's on.  But when we're really depressed, that's easy to say, almost impossible to do.  

But it is a goal you can work toward.  Watching your children play or concentrate on a tough math problem, seeing their smiles, spotting the first spring flowers, noticing all the beauty around us, can help send us in the right direction.  Enjoy every little thing you can, and keep searching for more to lift you up.  Serious depression is a serious problem, however, and sometimes it takes professional help to begin the climb up.  My middle child has bipolar disease and has fought depression for most of his life, so I'm the last one to say that beating serious depression is easy.

But the little things do help sometimes.  Exercise helps.  Finishing a task helps.  Doing a job you've put off but do anyway helps.  Lots of things help if we pat ourselves on the back for them, and if we make the time we need to both see and seek the help we need.

You're like most of us, beginning this battle up and ready for a fight.  And we keep fighting and trying.  But, if we're honest, most of us will also admit there are times when we feel beaten down, too tired, out of steam and too darn discouraged, just as you've expressed.  We can't be "good" all the time.  We have to give ourselves permission to feel many other emotions.  Whatever they are, as they come along, realize you're only normal for feeling that way. 

Use all the great suggestions for how to find the upbeat stuff, but realize we all get discouraged, angry, upset at times, and it's okay.  We all do.  It's part of the game.  

But also keep in mind that miracles do happen.  My miracle pill isn't perfect, but it sure beats the alternatives, so there's always something I can cling to when I need to pull myself up from the pits.  No one promised me a rose garden, I believe someone once said, so, like this letter, our emotions go up and down, around and around, because fighting cancer is like that.

I hope you're on, or will soon be on, the upswing, but if not, remember you have lots of company, and never hesitate to tell us when you feel like this.  We all care, and we will try to help. One of the first things I did shortly after my diagnosis was to seek out a hypnotherapist to help me on this journey, so don't hesitate to find a professional if you need one.  Your kids need an upbeat mother more than a new toy, your husband needs you more than a new computer or power tool.  Spend the money on them by helping yourself, if you need help.  Dump your problems in a pro's lap, instead of in theirs.

Sorry to ramble on so long with all this advice.  You're quite free to accept or reject it, but write again whenever you need us.  We're here to help if possible, and to care, as we always do.

Louise, from CT



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