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mariannebreathes

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    photography,parenting,camping,traveling,sci-fi

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  1. Hello everyone, I am so glad my pc still remembered my log in~! Thought I should update my status and see if my profile is still active. Anyhow I,m not sure how long my survivor status is- should the date start when I KNEW I was sick or 4 months later when they finally diagnosed me.......or when I was first labeled as " stable" ? If I go all the way to the beginning of this journey it will be 3 years now! The first year was pretty horrible what I remember of it. Then I spent over 14 months without a recurrence. But the nasty little visitor came back and this time in my adrenal gland. I found out on Christmas eve of 2009 that the smudge on the CT was sclc. The worst part was the uncertainty of my doctors - the arguing over treatments and the progression of my tumor throughout the first half of 2010. I actually told my doctors- I quit, that I didn't want chemo if they thought the treatment wouldn't ultimately help me. When I quit being their "patient" my whole life changed......I did what I never had the guts to do before. I got me a second opinion, and a third and a fourth.......and believe it or not, they surgically REMOVED my adrenal gland at Johns Hopkins and now I am receiving some post op radiation to the area. For the first time ever I was told that I am currently NED!!!!!!!!!! It's still hard to believe but I just keep trying to live every day as if it is my last and loving every minute of it. Sorry for the novel..........love and heartfelt prayers to you all Marianne
  2. Hi, I can understand how your mom feels. I was very down at the end of radiation and from chemo 4 thru 6. The sore throat was bad bad the first few days but improved dramatically for me and I consider myself lucky on that count. Even PCI was freaking me out a bit but now I am over a month out of that and am having many more good days than bad days. I am getting ready to turn 42 and have just completely finished menopause! The only things that got me through ( besides my beautiful little girl) is my Church, my ativan and my my hydros- ( probably in that order) My prayers and warm wishes to you and your mom!
  3. My hair started falling out in droves yesterday- and it's the short prickly hair so it's driving me nuts AND ticking me off. My head hurts sometimes but mostly I just feel like I AM in a fog and sleepy a lot. And in the last few days for some reason I have become very depressed. Not sure why that is.....but THANK YOU EVERYONE for your messages! Hugs and Prayers Marianne
  4. Ok Ned, just for you me and the kids will work on it next weekend and I promise to upload a pic good idea! Cancer might be scary But I can BE SCARIER LOL
  5. Hi everyone! I just finished my 10 days of PCI (brain) radiation and have my Hannibal lector mask to prove it. Just in time for HALLOWEEN too! I think i might paint it "glow in the dark" and nail it to one of our trees LOL Here is my question- for those of you that had PCI. Do you remember when your hair fell out or if it fell out? My doctor saw me on day 9 and said it might thin abit but he didn't think I would lose it . ON the other hand.....every hair on my head HURTS again so I think he might have spoken prematurely? Thanks for your input. prayers and hugs Marianne
  6. Hi, please forgive me if you read this on the other newsboard- I post on both because there not as many people out there with SCLC. Is there anyone out there who can share with me some good news that has been in a similar position? I have done my six rounds of chemo and my 30 rads and have nothing left but PCI. The radiologist said I have at least a 50% shrinkage but after that they can't tell. It could be scar tissue, dead tumor tissue, active cells- they just can't really tell and their attitude is to watch and wait. We were discussing my 7/31 scan and had a chemo right after that.......is it possible I will see more reduction in my next scan anyone? They have an oncologist appt scheduled for Sept 26th but no more scans right now. I cried all day yesterday- and I feel better today but it would be nice if I could here from some of you that kept your SCLC stable for awhile - or maybe it looked like tumor on the CT but never grew? I will grab onto any hope that I can and keep praying. God bless you all Marianne
  7. I want to thank all of you that have replied and I am sorry I wrote such a depressing post. I WILL call Monday at the Oncology Office and ask the P.A. to call in the script for Effexor? At the worst I could always quit taking it - if it didn't agree with me. As far as the question - what would counseling do for me? .....it really helped me deal with postpartum depression. The Cognitive Behavior Therapy was something I Could hold on to and I was hoping to find something like that again. Or maybe Ii just want someone to talk to------I sincerely see less than 2 people a month besides my immediate family and Healthcare professionals. I don't have anyone to talk to or listen to. So thank you all for listening to me-----reading my posts. Bless you all, marianne
  8. I am SO HAPPY for you----------*****HUGS****** That cuts your scanxiety in half Warmest wishes, Marianne
  9. Hi everyone, My life has drastically changed during the last 4 months since dx- but it seems that it is just catching up with me. Ever since the first or second week of July, I cannot stop crying. I am sleeping more and more , feeling more chest and back pain and SOB as time goes by. I was a wreck by 7/11 and went to the Onc for blood work thinking I was anemic- and maybe that was the cause of everything. They said my counts are super low but manageable and maybe I would consider an anti- depressant? I BULKED at that........and I don't know why. I have been on meds for depression before. But this time it seemed different. I am a true mess and rarely stop crying now - to the point I am SICK OF MYSELF. I had a scan 7/31 and the results seemed so ambigous compared to my last scan (on 6/12) and the shrinkage so small that they measured it out this time (the past few scans did not show measurements ) - something like 4.6 cm shrunk to 4.2 cm. Maybe I was so upbeat and hopeful because I spent the last several months in denial? Maybe I am going through the menopause the doctors warned about? I am on a waiting list for a Christian counseling center but in the mean time.......... I am asking you good people to share some of your "coping skills" for your low points...and has medication been helpful to you? Please tell me I can get past this - I am actually pretty healthy physically but slowly dying emotionally. I feel like I am failing GOD, my child and my family and I don't want to throw this "pity party" anymore. What happened to the "real me'? where I am I ? Thank you so much for letting me have a place to ramble Marianne
  10. Hi Kathy, I was diagnosed with SCLC in April, please feel free to PM anytime. Hugs, Marianne
  11. Thank you -so much EVERYBODY! The pain is less- and I think the fear was making the pain worse. I was immobilized by fear. My neuropathy seems to come and go and is not that extreme. That Magnesium oxide is really working for me!!! The breast and back pain has settled down to a soreness and like a light sunburn. Just 4 lortabs a day now. I have to leave the house= but want to thank ALL of YOU and GOD. He sent me a message today somehow........and it was "Don't DOUBT" and it has helped me immensely. HUGS AND PRAYERS to you ALL Marianne
  12. Thanks for replying--- the pain from my spine radiates in a band around to my nipple and it burns like sun burn - a constant pain that burns and tingles- that seems worse at night when I am not distracted. Sometimes a shooting pain now and then. The hydrocodone does nothing but help me sleep so now I have 100 useless pain pills,sigh Hurts worse with clothes touching it- it's the area right under my bra actually. I have had shingles before but always in my scalp.
  13. Hi Everyone, I know I don't post often though I tend to lurk alot. My 5th round of Cisplatin and Etoposide is coming up on July 14th. On July 5th I noticed my fingertips were tingling- the next day the soles of my feet were burning. Called oncology = dr. on call called back and said sounds like Neuropathy- talk to you reg onc about getting lyrica or neurontin. Called Office monday and was called back by a nurse to take Magnesium Oxide. Called back Tuesday because now my back was burning and my nipple (on the right side only) - no answer so frustrated I called radiology and by WED my Oncologist's P.A. asked me to come in- said she thinks I have shingles. So started taking zovirax on wed. Now it is Friday. Pain is still intense when I went to my reg Onc for blood work and standard visit. Tingling in fingers and feet are gone but back pain and nipple pain feel like serious burns. No lesions...no rash. Onc bangs on my spine a bit and ask a few questions and is pretty sure it is NOT shingles and NOT spine mets but doesn't know what it is. She gives me 100 lortabs and said I hope you feel better. Maybe you pulled a muscle? She ordered another Chest CT for July 31 Help--------what should I do? Am I being too anxious about this? Should I call a chiropractor? I see my radiologist NEXT Friday- should I go over all this with him and hope HE will be more proactive?
  14. I was looking at some older pics and some of Becca's baby pics and just getting all teary eyed and thankful of all the time I have had with my little miracle baby- the one they said I would never have so bare with me and maybe some will bring a smile to your face. These are all of Becca and her cousins, she is the only blonde. Warmest wishes to all of you! My sis with her first born last picture is Becca's only claim to fame
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