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Member (Idle past 1405 days) Posts: 20714 From: the other end of the sidewalk Joined: |
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Author | Topic: Living with Cancer (from Cancer Survivors) | |||||||||||||||||||||||||||||||||||||||||||||||||||||||
Asgara Member (Idle past 2302 days) Posts: 1783 From: Wisconsin, USA Joined: |
Heading back to Mayo today. Tomorrow I get all my testing done pre-surgery. Having my second thoracotomy on Tues.
Please keep all pertinent appendages crossed and swing any appropriate barnyard fowl.
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Asgara Member (Idle past 2302 days) Posts: 1783 From: Wisconsin, USA Joined:
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Wow! I don't even know what to say. Any way I could conceivably say thanks will never be enough, but I will say it... THANK YOU ALL!
I've been here in one form or another for 12 years. I've seen posters come and go. I've seen them pitch a tent in the corner and settle in for the long haul. This group has been like family. I'm currently sitting at another crossroads in my cancer journey. I'm in recovery from my second thoracotomy in less than a year. I'm due to start my third group of chemo treatments on the 1st of June. I was at my one month post-op follow up at Mayo last week and got some not great news. I now have several good sized mets in my peritoneal cavity. The team at Mayo is now saying that the plan has changed from hitting this aggressively with chemo and surgery in an attempt to get rid of it... to taking it softer with chemo hoping for maintenance...a balancing act between keeping the cancer at bay and not wearing me out with the chemo. I see my local team tomorrow to discuss options and make a plan. The nurses there say that Mayo doesn't know me and they do. They know what I can handle and how hard I fight. My favorite nurse insists that they will get me through this. So, If anyone is interested I'll update when I know more. Oh, Perdition didn't mention this but one of the life events that keep him a lurker now is my almost 3 year old first grandchild, Moira. She is plenty reason enough for this Gaga to stick around. Love you all!~~Asgara Edited by Asgara, : typo
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Asgara Member (Idle past 2302 days) Posts: 1783 From: Wisconsin, USA Joined:
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Ok, just going to copy my last Facebook post. Easier than composing a new message. Facebook friends, feel free to ignore this.
Many of you know that I was back at Mayo the beginning of May for my 30 day post-op appointment. The news I got was not what I was expecting or what I wanted to hear. The plan had been to go back on chemo then probably zap the two remaining lung mets with radio frequency ablation, finish out the chemo and then see what happens. What I was told instead is that there are now several tumors in my abdominal cavity, what are called peritoneal mets. They aren't part of an organ per se but are attached to the peritoneum; the 'sack' that holds the abdominal organs. These tumors did not show up in scans the end of January. Plan has warped from "hit it hard and aggressive with chemo and surgery to try and clear it all out' to 'go softer and just try and maintain status or hope for some shrinkage with chemo.' I do have an appointment with my original surgeon this Friday just to see if he has any opinion on my future course. The surgeon does offer a very intense form of surgery/chemo combo that you used to have to travel to the big names to even discuss. Unfortunately, right now, I am not eligible for this surgery as I still have involvement elsewhere, namely the lungs. This could change in the future and it is nice to know that option is available locally from a surgeon I know and trust. As it stands right now, I start back on the original chemo again on Monday the 1st. If we see that this chemo works on my tumors we'll stay on this while carefully monitoring the neuropathy that is a side effect. I still have issues with my feet from the chemo 2 and a half years ago. I do not want it permanently in my hands too. If the side effects get too hard we will take off the heavy hitter in the chemo cocktail and I will try just going on maintenance chemo and see if it continues to work. Fortunately, I am still on first line chemo for colon cancer and there are still several other options waiting for me if needed. Believe me also, I am keeping a close eye on trials coming down the road. Keeping a VERY close eye on the vaccine we got from Cuba. Roswell Park in NY is starting work on it. The hope is that it can be fast tracked through trials as there are many years of records that came with it from Cuba.
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Asgara Member (Idle past 2302 days) Posts: 1783 From: Wisconsin, USA Joined:
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Thought I'd give you all an update.
I have been on chemo since I healed up from last thoracotomy last April. Chemo was hitting me very hard before Oct of last year. I was too fatigued to even drive so my posse took care of me. . Had one point I was just begging them to put me in hospital and let me sleep it out. I had a long break over the holidays and felt well enough to take a road trip with Perdition, his wife, and my fabulous granddaughter Moira. Started back on the chemo after Xmas and have been doing much better. I had a CT scan in March and then just last week. I'm just copying my FB post here.... ...scan came back good.... a couple of little nodules on right lung are a tiny bit bigger... small nodules on left lung are unchanged but the peritoneal nodules have all decreased...a 15 mm that used to be 18..... an 18 that used to be 29...... a 16 that used to be 20.... a 13 that used to be 17..... and a 15 that used to be 24. blood work is starting to get to the stage where I might be skipping some chemos and I will be getting Neulasta on wed. I'll find out then if my CEA is still coming down.... Chemo is starting to catch up to me again so, again, might be having some breaks. Any questions feel free to ask. Feel free to friend me on FB too... just pm me so I know who it is. Update Your Browser | Facebook Edited by Asgara, : No reason given.
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Asgara Member (Idle past 2302 days) Posts: 1783 From: Wisconsin, USA Joined:
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Well I guess it is that time for an update.
Officially I am on hospice. That doesn't mean that I've given up or anything it just means that right now there's nothing for me to work on and I'm just working on feeling better. Currently my life is working on goals. I made it to my big family reunion trip up to Northern Michigan and it was fabulous. Made a long day trip to Chicago yesterday with my granddaughter to see her very first play for her 5th birthday. The biggest news was my daughter managed to surprise me with a wedding. She knew I desperately wanted to be at her wedding and she planned it in 3 weeks and I got to be there with her brother, Perdition, officiating. Next goals in line are for the second granddaughter's first birthday in January. Next comes my daughter's graduation hopefully in December if not this spring. She will be a wonderful teacher. My hospice nurse says she currently has people who have been on hospice for over 3 years. My very biggest goal is to beat that record. Once again feel free to follow me on Facebook at Gayla.Ross. Send me a message real quick to let me know who you really are. I don't plan on going anywhere too quickly. Love you all. Edited by Asgara, : No reason given. Edited by Asgara, : No reason given.
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Asgara Member (Idle past 2302 days) Posts: 1783 From: Wisconsin, USA Joined:
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I would never tell you to take a flying anything Faith
I tend to stay away from anything too alternative but i am reading and listening through your links. Motivation and energy are my downfalls currently. When I have both in some abundance I like to plan things with my family, especially the now TWO granddaughters that Perdition and his wife have given me. Moira just turned 5 and Keira is 7.5 months.
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