Time to stop watching and join in…
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Hi Harmony
Like you I’ve just joined after ‘lurking’ for a while. It’s great to hear of someone else being so upbeat about all this – I thought I was a bit odd because I’ve always stayed so positive (despite the best efforts of various Doctor dooms). I’ve also been a bit shy of posting because I wasn’t sure if I should come on here being so positive, your post has shown me that a positive attitude is a real tonic.
My only symptom has been a slight stitch in my side and like you I’ve got some lymph node involvement but also mets in my lungs. It depends on which Doctor I’m talking to as to how serious these are!
Keep staying positive as it’s a waste of time to be miserable.
Good luck with the Gem/Cis.
Julie (Munchkin)
Hello Harmony. Let me add my welcome to all of the others! Please please please keep posting and keeping it real. I’ve found it so very helpful to read about what actually happens when dealing with this. Makes the future seem less scary somehow.
Happy birthday to your son, and keep striding forward! All the best to you
Janet
Hi Harmony,
We’re so glad to “meet” you! Your spirit and energy are an inspiration to all of us. Hope you continue to do well and enjoy life every day!
All the best to you,
Kristin
Welcome and yes you bring us all Hope. Funny about you shaving your head. Our doctors all made sure myhusband knew that in treating CC you don’t lose your hair. But I’m sure a new style is refreshing and easy. Keep us all posted. My husband is on his second week of 7 day 5FU drip into his port, for 5 weeks, so that is like 35 days straight chemo drip and then radiation 5 days a week for 25 visits. Week two, he is wearing down and man, he lost 60 lbs and is so cold and weak, I’m amazed that some people can continue to work. Keep us all posted.
Hi Harm!
I think the only problem we’ll have here on the board is figuring out how to bottle your energy and clone you! You are an amazing woman!
I KNOW you will be a wonderful asset to our family! Welcome and many hugs!
Pam
Wow – Harm!! WELCOME & THANKS for your inspiring posts. They’ve VERY helpful – particularly as my sister’s on Gem/Cis, too.
Please keep coming back & sharing your news with us
My very best wishes
JuliaHi Harmony:
I will chime in with the others welcoming you to this site. Feel free to come back as often as necessary.
Prayers are coming your way from Wisconsin. Happy Birthday to your little guy.
Go with God and KEEP KICKIN’ THAT cancer.
Margaret (My husband and Cholangiocarcinoma)
Hi Harmony.
Welcome to the site although I am sorry that you have to be here. I can’t really add anything to what the others have said, but I just wanted to join them in welcoming you here. Please keep coming back as you will get a load of support from us all. I was my dads carer during his fight with CC and everyone here helped me so much, and I know that they will all do the same for you.
Thank you for sharing your story with us all, and I do love your attitude.
My best wishes to you,
Gavin
Welcome to the site, though I am so sorry you have to be here. Can I just say that I enjoyed reading your post Harm – you have a knack for writing and communicating yourself and I don’t find it off putting at all.
Best wishes to you in continuing your fight!
Wow… you are truly incredible! We DO want your hope!! Thanks for sharing your story – Happy Birthday to your little one, and enjoy living that amazing life of yours!
Thanks for the warm welcome, all. I want to be positive – if I keep it up, I really believe it. Not everyone is into prayer, but I am, and it helps me. I don’t believe for a second that God “gave” me this yuckiness, but I do believe that He’s re-purposing this business into something positive for me. I’ve learned a lot from this short journey so far, and every day I get more out of it.
I’m from Austin, TX, and absolutely love it here. I had the option of moving my care to MD Anderson when the diagnosis was made, but to be honest, I was so blessed to be introduced to an oncologist here in central Texas who is considered a rock-star and my surgical oncologist completed fellowship with MD Anderson and was chief of surgery at UT Medical. They’re both side by side with me in this fight, and are willing to be more aggressive than the norm. I agreed in my mind to give them first crack at me – if it didn’t get better, I’d be moving on. But it has gotten better, and more than what they were expecting. So, they’ve got my business.
Kris, Kombucha is just fermented tea – a raw, usually organic beverage that is basically a feel good tonic for me. The fermenting process gives it a great quantity of polyphenols, antioxidents and probiotics. In addition, it’s a great detoxifier, and since my liver is dealing with both cancer and chemo, I wanted to help it out a bit and see if we can get the leftover chemo out of my body as soon as I was done using it. I drink it every day, just a 16 oz bottle – the flavor takes some getting used to (almost a cross between hard apple cider with some vinegar thrown in), but I’m hooked. I have no clue how much it actually does for my body, but yep, if it might help, I’m willing to give ‘er a whirl.
Ok kids, I broke my own rule of not jacking around with cancer unless it’s cancer-butt-kicking day (chemo day). So I’ll be back on 3/19, my next chemo, to check back in. I really do peruse this site while I’m sitting there all freakin day loading up on poison and 2 liters of IV fluids – sweet that infusion has wi-fi. Today is my son’s 4th birthday, so I’m going to pick my little pirate up from school and live some more life….at least till it’s bedtime.
Really, God bless all of us. Every day I fight, I fight for all of you, too.
Harmony,
It’s wonderful to surprise the doctors, and what a job you have done!
Please explain to me these 3 cycle rounds. My doc said I would have 8 3-cycle rounds. Day 1, day 8 and a week off. Sounded ok to me until I thought wait a minute, there’s actually a week off between day 1 and day 8… that means it’s really once a week. Sounds like you have it on day 1, day 8 and then day 16?
Also, is the port in your chest? How do you feel about that? I’m such a wimp about hospital/doctor things (have always been very healthy), but I do much better when things don’t come as a surprise to me.
Kathy
Hello Harmony,
Welcome to the site. We are in the same age group and with the same determination. Like you I dont know what the future holds, but I am going to do anything to get there. I need to look into Kombucha, havent heard of it before.Take care.
KrisHi Kathy:
I have to say, I think we’ve all been surprised with how well I’ve at least handled the Gemsar/Cisplat combo. I have a port and my cycle is currently 2 on, 1 off. So I go in two Fridays in a row for my infusion and then have a week off. Pretty standard, from what I understand. My two largest side effects have been heartburn (which is incredibly well controlled with a Protonix scrip) and insomnia the weekend of chemo (again, thanks decadron). Basically we’re doing 3 cycle rounds. After each 3 cycles (6 treatments), we’re re-evaluating what’s happening. My oncologist noted that the second set of 3 cycles seemed to have more of a cumulitive effect on the cancer than the first 3 cycles, so we’re hoping this round (which ends April 16) will do even more. I guess we’ll find out.
Of note, my tumor markers were always on the low side. Highest I ever had for CA19-9 was 90. Right now I’m hanging at 40. Eh, it’s just a number, as long as it doesn’t go up, I’m happy.
I have to say that I’m living life just fine as it is. I still work full time because I like it, I’m an active wife and mother, and aside from not having quite as much stamina as before, I feel like I’m doing ok. I had chemo on Friday but on Saturday I was totally fine to run errands all day, take my son to a Dr. Suess b-day party at the library, and then a dog expo right after. I work out on the treadmill 4 days a week, speed-walking. I’m hoping it helps to keep extraneous fat off and maybe I’ll see an energy boost to combat some of the mild fatigue I sometimes have. It’s all a big science experiment to me right now, because hey, I’m willing to throw just about anything at it and see if it sticks.
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