March 8, 2010 at 9:18 pm #36082darlaParticipant
Welcome aboard. As you have learned, this is the best place to go for support, advice and everything else concerning CC. Wow! What an uplifting story. I love your attitude and strength. I am sure that your story will give hope to others who come here looking for it. You are young and have that wonderful little boy, so you have so much to live for. Love the hair story!
Keep posting, you are a welcome addition to our family.
DarlaMarch 8, 2010 at 9:14 pm #36081lainyParticipant
Hi Harmony and WELCOME to our wonderful family. I am in AWE of you! You are something else, girl! You are a total inspiration to everyone “lurking” on this Board and then some. By the way we love “lurks” as eventually come on board. What a wonderful story and your little munchkin will be so very proud of his mother when he is old enough to understand. Who know, maybe he will take you to “show & tell”. Just kidding. But why not you are already a survivor and a hero. Mind telling us where you hail from? Keep up the great attitude and wishing you all the luck in the world, and now that you took the jump to post don’t be a stranger.March 8, 2010 at 9:05 pm #36080kathybMember
Thank you so much for posting! I have an inoperable tumor the size yours was. Went through 24/7 chemo and radiation last fall which made it stop growing, but didn’t shrink it. Now I’m debating when to start Gemzar/Cisplatin. I thought my oncologist said it would be easier chemo than before, but I’m not so sure about that after reading more about it. Was your chemo every week? Mine is to be every week for around 6 months! What were your side effects? I think I do better if I’m more prepared. Did you have a picc line or port? I’m feeling great and would not know anything was wrong these days if I didn’t have this diagnosis.
Thanks again for posting. I know chemo doesn’t work for everyone, but it just might for me if it did for you :o)
KathyMarch 8, 2010 at 8:29 pm #3247harmonyMember
Hi, I’m Harmony. I’ve been “lurking” for months, ever since my diagnosis – mostly because I’m still figuring out what I need to say, and what needs to be said. May seem strange, but I know that when I was diagnosed, what I wanted more than anything was something positive to help me catch my breath and fight fight fight. CC is just so stinking rare and I felt like I needed those awesome cure stories to help me believe that I could beat this too.
I’m 31, the mother of a 4 year old son. On a Sunday in the middle of September 2009, I had a stomachache, kind of like a stitch in my side. It didn’t go away thru the day, so I dropped by my Dr. the next morning. By 5 pm that afternoon, I had already had an ultrasound, a CT and an appointment the next morning with an oncologist. By that Friday, I had a biopsy and a Stage III-IV diagnosis of CC. My liver was distended from a 6.5 cm mass and I have some local lymph node involvement. The stomach pain was my first and only presenting symptom. No history of gastro issues, healthy, mostly organic eater, follow a low fat diet, no heavy drinking, and no traveling to locales that would’ve exposed me to liver flukes. Basically, them’s the breaks, Harm.
My options were limited, since I was not a surgical candidate with the lymph node involvement. I agreed with my oncologist’s recommendation to hit it hard with the Gemsar/Cisplatin combo and began chemo on 10/1/09. I supplement my chemo with what I consider my science experiment: daily turmeric ingested via the shot-glass method (olive oil, black pepper, and about a TBS of turmeric mixed in a shot glass and downed right before dinner) and a bottle of Kombucha daily (to which I’m now addicted).
Fast forward to the beginning of March 2010. After 6 total cycles of chemo (including one blissful month off that I took in February so I could take a girl’s trip to Mexico), my cancer activity has shown a 50% shrinkage. The mass in my liver itself is now about 3 cm. The cancer activity in my lymph nodes is melting away, and according to my surgical oncologist, the aggressive resection with lymph node removal is looking more and more like a viable option for me. I’ve gained back the weight I lost around diagnosis (10 lbs) and then another 10 (thanks, decadron), and haven’t had pain since the first cycle of chemo.
Will this keep working so that I can cut this evil disease out of my body? I guess we’ll find out. What do I want to accomplish by posting this to begin with? Honestly, I want to give someone what I wanted and needed in the beginning – a picture of someone kicking butt. I felt like I had to run out into the street and throw myself at stranger’s feet, begging someone to help me. Sheer terror. Guess, what….the terror is gone. I want people to be able to catch their breath and realize that YOU CAN WIN. I have no idea what will happen to me – I could die of a zillion things, but I’m really hoping it’s not this. I don’t know, unfortunately, what people want though. Do people want my hope? Does it help to see someone thriving?
I’m in communication with the social worker for my oncologist to see if I can be of assistance to other cancer patients who get that slap-you-in-the-face diagnosis but need to see or talk to someone who got thru that and is battling it out, so that helps with their fear. For us here who are either in the trenches, or fighting alongside a loved one, I say thank you for letting me watch you the last several months. I want to add to this community, but worry that the energy that I generate to at least help keep me going would be off-putting. Do you guys want to know about my infusion nurse telling me at the very beginning that my hair would fall out, so I shaved my head, only for my hair not to fall out? Yeah, I loved my hair. It’s now a cute pixie and all, but man, I felt like a brainiac when I had a shaved head but it just kept coming. Honestly, I love the way that God taught me about vanity. Get over yourself, Harm.
Anyhow, that’s it. Keep fighting. All you have to do is get through today – so make sure it’s the best it can be.
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