Guest Kaylei Posted April 7, 2007 Share Posted April 7, 2007 Eleven months ago I was diagnosed as Stage IV NSCLC. My journey so far is a little different than many of the journeys I read about. Which goes to show how different cancer is for each and every one of us. I'm Stage IV but I've had surgery to remove the one small tumor in my upper left lobe (a tumor NOT found on an Xray). Mild-like symptoms that concerned me that maybe I was having a stroke sent me initially to the emergency room where a scan of my brain showed something. CT scan of lung next day showed a small tumor. Initially I was told by the first oncologist I was inoperable. However, my neurosurgeon and lung doctor were more optomistic. Fortunately fast action and firing the first oncologist and working with my incredibly progressive lung doctor, neurosurgeon and newly replaced oncologist who were open to thinking outside the box had me within a month treated with Gamma Knife and and then upper left lobectomy followed by adjuvant chemo right after that. It was because after confirming that for some odd reason the cancer shot so straight to my brain and appeared contained as in no lymph node involvement etc. I was so fortunate that they were willing to think outside the box. They agreed if the pet scan and other scans were clean then yes, especially considering how my general health was very good, then lets do it. So I got the gamma knife on all three brain mets and then the upper left lobectomy within a month of finding out about the cancer!!!!!!!!!!!!!!! The 12 lymph nodes removed were clean and there was no other spread to my lungs. I've been told that it was pretty rare a window of opportunity that happened, and that of course I am still Stage IV and that's fine with me. I'm living quite healthy and closely monitoring the behavior of "the beast". Such as I have had a flare up of a few more brain mets and I was told from the beginning that was a likelihood and we would treat them as they arise. So we zapped a couple last month, two with Gamma and one with localized radiation. Got em! Whole brain radiation is of course a good option for me to get any other cancer cells that may be lurking around in my head. But again, I've asked that we not for now and save it for later if needed. What if that was my last flare up of brain mets? Why do whole brain radiation yet when we can just zap a little more with the Gamma Knife. I'm living quite well with a chronic illness and life is good! So here I am and happy to be a part of such a wonderful group. You guys have no idea how much your stories have helped me as I have read through this forum! Thank you and I hope that in some small way I can give something back here to you guys by joining in! Quote Link to comment Share on other sites More sharing options...
ernrol Posted April 7, 2007 Share Posted April 7, 2007 Welcome to the site. It sounds like you are doing all the right things. It's always great to hear about some one winning. Stay positive, Ernie Quote Link to comment Share on other sites More sharing options...
Kasey Posted April 7, 2007 Share Posted April 7, 2007 Welcome Kaylei!!! You sound like you have had an incredible journey these past 11 months and have come out on top . Good for you. Beleive it or not, I think I 'met' you in MySpace !!!! From time to time I visit Katie's space there and saw you listed as one of her friends. I don't actually have a MySpace. Katie tells me it is EASY......but I am technologically impaired ! Perhaps she (or you) can help me with it. It seems there are a few lc folks there. I need to learn how you find each other there. Anyway, I digress. Kaylei, I am so pleased you have found your way here.......not pleased that you had the need though. There are many 'experts' on tx, and the most compassionate folks you can find anywhere here at LCSC. I'm looking forward to spending some time together. KAsey Quote Link to comment Share on other sites More sharing options...
Don M Posted April 7, 2007 Share Posted April 7, 2007 Welcome Kaylei. I hope you have no more brain mets ever. I would hold off on the wbr too. Don M Quote Link to comment Share on other sites More sharing options...
Shelley (MLC) Posted April 7, 2007 Share Posted April 7, 2007 Kaylei, welcome to the site and thank you so much for sharing your story. It gives all of us hope! It sounds like you found a wonderful Dr. I wish more of them would "think outside the box". My best wishes for you. Shelley Quote Link to comment Share on other sites More sharing options...
mary1958 Posted April 7, 2007 Share Posted April 7, 2007 Welcome Kaylei. Your story is certainly one of courage and not giving up! Quote Link to comment Share on other sites More sharing options...
recce101 Posted April 8, 2007 Share Posted April 8, 2007 Hi, Kaylei, and a big welcome to the LCSC!! One thing that came to mind as I read through your post and profile is how outmoded the lung cancer staging system has become. You're living proof that no matter where the system places a person on the I thru IV scale, every patient should be treated as an individual. You can thank your lucky stars that you found a medical team that did just that. And your great attitude certainly didn't hurt. Did you get your treatment in Ok City? The three happiest years of my childhood were spent in Altus -- we moved up there from Texas to be near relatives during World War II, since it looked as if my dad was about to be drafted (he wasn't, thanks to a rule change that exempted fathers). Then I spent another three years at Vance AFB (near Enid) at the beginning of my flying career. You'll be an inspiration to lots of folks in our corner of cyberspace, especially those newly diagnosed as Stage IV whose doctors still have their feet planted somewhere in the middle of the last century. To paraphrase what we Air Force types used to say about one of our sister services, "...years of tradition unhampered by progress." Again, welcome, and (P.S) I enjoyed visiting your web pages. Aloha, Ned Quote Link to comment Share on other sites More sharing options...
carolhg Posted April 8, 2007 Share Posted April 8, 2007 WOW! That is a great story and you certainly had wonderful doctors once you kicked the first onc to the curb. We need more doctors who think outside the box. Welcome! Carol Quote Link to comment Share on other sites More sharing options...
daddyslittlegirl Posted April 8, 2007 Share Posted April 8, 2007 WOW! What a wonderful story. Thank you so much for sharing and welcome to the sight. I'm so glad you joined, it's people like you that help to give others the hope we need. God Bless! Quote Link to comment Share on other sites More sharing options...
missyk Posted April 8, 2007 Share Posted April 8, 2007 Kaylei... Welcome to this wonderful place! I was so happy to read your story...but sorry that you've a reason to join us. I'm happy to hear, too, that there exists a medical team that's willing to do whatever THEY think will help, instead of leaning on outdated treatment plans. All my best to you...sending prayers that you'll never need to zap another met!! Quote Link to comment Share on other sites More sharing options...
Guest Kaylei Posted April 8, 2007 Share Posted April 8, 2007 I'm speechless. Well almost, but for me its about as close as I ever get to being speechless. Katie you told me I would find wonderful friends and incredible support here and you are right! That quiet part of the cancer journey, that part that feels very solitary at times, well, you guys just took that completely away. I feel like I found my way home. Katie, thanks also for helping getting me registered since even though, Kasey, I have a space on myspace (which my daughter helped me with) I was so technically challenged I needed Katie's help get me up and running here! LOL However, I got that myspace thing figured out now so I'd be glad to help you Kasey if you want to get one set up! Thank you Kasey also for the warm welcome to the forum! Ned, yes I got my treatment here in Oklahoma City and I just can't say enough good about my "team". When I spoke to my lung doc's nurse last week she told me how he got "Doctor of the Year" award at the hospital. He so deserves it. I'd vote him for "Greatest Doctor in the World" if I could. I hope for all of us that more funding for research, more thinking outside the box happens soon and the willingness to take more risks for us. This attitude needs to change. And Ned, thanks also for letting me know you enjoyed my site, I appreciate that. Missyk thanks for the prayers and I hope too I never need to have another brain met zapped. Last month I felt like they were starting to sprout like weeds! The only side effect I have from all this last zapping in my head is occassional numb feeling I get in my left hand and the left side of my face. It comes and goes. They are keeping me on a low dose of steroids because I tend to get brain swelling after the Gamma. I guess I may be on steroids a month or so which will basically mean I will be shopping for clothes two sizes larger and at the rate I'm going, by next week. Daddyslittlegirl,Carol,Mary1958, Shelley,Don M,and Ernie, thanks to all of you for your kind words and encouragement, and for the warm welcome to this group. Katie, I know I said thanks already, but I want to say it again and tell you that I am so grateful to you for all the blessings you have brought to my life. You have really touched my heart in so many ways. Happy Easter Everybody! With Gratitude, Kaylei Quote Link to comment Share on other sites More sharing options...
trish2418 Posted April 8, 2007 Share Posted April 8, 2007 Welcome, Kaylei. I'm so glad treatment is going well for you. Keep on posting afnd inspiring the rest of us. Trish Quote Link to comment Share on other sites More sharing options...
barbara5452 Posted April 8, 2007 Share Posted April 8, 2007 Kaylei, it is stories like yours that keeps hope in all of our hearts, thanks for sharing. Quote Link to comment Share on other sites More sharing options...
mamasbabygirl Posted April 8, 2007 Share Posted April 8, 2007 Wow, you are so very lucky to have found such an aggressive team, it is unheard of! I hope that you stay strong and positive-welcome! Quote Link to comment Share on other sites More sharing options...
Don Wood Posted April 9, 2007 Share Posted April 9, 2007 Welcome! Quote Link to comment Share on other sites More sharing options...
Donna G Posted April 9, 2007 Share Posted April 9, 2007 Welcome! I am so happy for you that at such a young age you found doctors willing to go all the way for you! Soon, very soon you will be celebrating one full year of survival! Let's have a party! Donna G Quote Link to comment Share on other sites More sharing options...
Judy-OK Posted April 10, 2007 Share Posted April 10, 2007 Kaylei ..... from one Okie to another welcome to this wonderful site. I, like Kasey, have not figured out the my space stuff yet but I do check this site out daily. I had a friend that had gamma knife done in OKC will have to find out who her team was ... I do know she just loved them. Judy Quote Link to comment Share on other sites More sharing options...
ztweb Posted April 10, 2007 Share Posted April 10, 2007 Welcome! I am so happy to read about your positive attitude and your strength! Thanks for joining us! Jen Quote Link to comment Share on other sites More sharing options...
alexan Posted April 10, 2007 Share Posted April 10, 2007 Bienvenida !!!!!!! bucky Quote Link to comment Share on other sites More sharing options...
Maryanne Posted April 11, 2007 Share Posted April 11, 2007 Wow!!!! What an inspiration you are. You are soooo welcome here. We need these wonderful uplifting stories for people who walked or are walking in your shoes. This shows them there is help out there. If you are not satisfied with the help you are getting look elsewhere. Having your wonderful doctors going "out of the box for you" cetainly paid off, big time. I am proud of you and all your progress. May you continue on that road of healing. Thank you for sharing. I am so glad our Katie found you and brought you here. Do you have a link to your my space site? Take care, and again we welcome you to our family Maryanne Quote Link to comment Share on other sites More sharing options...
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