4 years NED

[ljdub]

I keep seeing from new posters that they come to this forum for hope and maybe some cheering up when they are feeling that their worlds have spun out of control, so I'm posting my story so others can see it IS possible to survive this disease.

The basics of my story are in my signature, but details are:

I had no symptoms whatsoever - my cancer was found entirely by accident when I got a respiratory infection (had gotten these easily all my life) and my doc ordered a chest x-ray. Suspicious spot showed up on the upper right lobe, looked about an inch or so on the films. Had a cat scan and then a needle biopsy to confirm - NSCLC adenocarcinoma.

Ordered me to surgeon immediately, who got my hospital records and asked me as we looked at them why I hadn't done anything about the "spot" exactly one year before when I had a previous respiratory infection and chest xray. My reply - Nobody told me there was a problem. In fact, my doc's office had missed it entirely and called to say all my tests were fine, I just had your standard resp infection. Wow. What do you do with THAT kind of information, when you know something might have been caught a whole year earlier? It sure messes with your head.... would it have made a difference? Who can know?

Went for the mediastinoscopy to check for lymph node involvement - none indicated by that procedure, so scheduled surgery to remove upper right lobe. This was looking fairly ok, maybe early stage and no treatment other than surgery might be needed?

Bummer. Once inside, had to remove middle right lobe, as well as the top, plus a bunch of ugly looking lymph nodes, but had to stop messing with one sitting right on top of my pulmonary artery, since if that were nicked, end of story..... so, now radiation and chemo were definitely in my future and it seemed I was being re-staged every time I turned around, and getting progessively worse news each time.

Decided since I had world class Mayo Clinic in my backyard, so to speak (2 hours south in Phx area) I'd put myself in their hands. My oncologist there was wonderful beyond description. Suggestion: make sure you really like and trust your oncologist - it makes SUCH a difference as you or your loved one goes through this awful time.

Scheduled radiation 5 days a week and chemo once a week, for 6 weeks. I was SO lucky - my blood work was phenomenal, white counts stayed virtually normal until the very last treatment, when I had my first neulasta treatment. I lost my hair, but the wig was better than my own hair, or at least easier! Very little nausea at all - the worst part of chemo for me was sitting there for several hours while it dripped in!

Radiation was more of a challenge for me. They were targeting the very center of my chest, that pulmonary window, and my esophagus got terribly burned. After a while I couldn't eat much of anything - it simply hurt too much. They did give me a magic "potion" to help with this - it did numb the esophagus, but as soon as I ate or drank anything, that effect was erased. Needless to say, appetite went WAY down, probably as a result of the chemo together with radiation pain. Eventually I couldn't even drink water without crying in pain, and that's when I decided it was enough for me. I completed 27 of the 30 scheduled radiation treatments, and though they would have preferred me to complete the last 3, they respected my decision. I was down 40 pounds by that time, but then, I could afford to lose it!

So, that completed treatment and we came home to begin regular CAT and PET scans, at first every 3 months, then every 4 - 5, and now as I begin the last year before reaching the 5 year all clear mark, we're just doing a chest xray every 6 months. At my last visit, my oncologist was jubilant - he said the best advice he could give me was to wear my seatbelt, since everything else was doing so great!

I should add that my original oncologist, who was with me through all of treatment and beyond, left to do research into this disease, which though I hated to lose him as my doc, I was so glad someone of his caliber would be doing. I didn't care for my next assigned onc, so I requested another, and HIM, I love! Again, having the right doc makes all the difference in your attitude, so keep looking until you find the right one for you!

So, on this roller coaster ride I began by thinking we might just cut out the "bad" parts and be done with it, 1a maybe! but as most of us learn, it's rarely quite that easy with this disease.....and I was restaged at every step until it ended up 3a or possibly 3b - they were never entirely sure if it had crossed the window to the left side so we just blasted away and hoped, and so far, it's done the trick.

I know how very lucky I am - and I also know I had an enormous support system, with so many prayers and good thoughts being sent on my behalf that it just felt like I "floated" through it on a pillow of good vibrations. I also didn't focus on it - I viewed it as a temporary detour on my life road as much as was possible, and I think by not making it the complete focus of my thoughts, I didn't give it power, if that makes any sense. Not denial, since you can't deny it when you're going through this, but refusing to give it any more power over me or my thoughts than absolutely necessary. I also had an incredible support in my husband, who kept things as normal for me as possible, God bless him. So... though 4 years ago I had to face the possibility that I might not live to see my daughter find love, have a family, etc., now I can say I was there to walk her down the aisle 18 months ago, and now she is 4 months pregnant with my first grandchild, and I can only be so grateful that I'm here to share these milestones.

I hope that others find some strength in reading this story, and that there will be many others blessed as I have been to come through this battle this far and still be here, living full lives and sharing time with their loved ones, which is all that really matters in the end, isn't it? I always welcome questions or any way I might be able to share something that might help, so don't hesitate to email me if there's some way I can assist or just to listen. Blessings to you,