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.
I just learned that you and your son both post here. Just how cool is that!!
Je Suis Charlie
Under a government which imprisons any unjustly, the true place for a just man is also in prison. Thoreau: Civil Disobedience (1846)
If there is no struggle, there is no progress. Those who profess to favor freedom, and deprecate agitation, are men who want crops without plowing up the ground, they want rain without thunder and lightning. Frederick Douglass
The only thing I suggest is that genes died as a result of all those people and animals dying in the Flood, whose traits were lost to the species and therefore the alleles for those traits, so the genes just died and remain in the genome as corpses. Faith
Thanks to you for being alive and part of our extended family as well. I cannot imagine how it is to battle cancer. My father left us at age 59 when I was but 17 years old. He lives on in my thoughts and memories---and my faith promises me that he is still alive in one form or another.
I've been here in one form or another for 12 years.
Indeed you have. I have seen your name up on that list even though rarely hearing from you. Family is like that. We often take each other for granted, but we do cherish the presence of one another in this life and, hopefully for all eternity. Though our hope lives on eternally through our children, grandchildren, and extended family, we each have hope for ourselves, our legacy and purpose in the life we live now. So...to get personal if i may, what is it within you that causes you to fight, even when you are weary and longing for sleep and inner peace? Is it more than family and extended family?
I'm currently sitting at another crossroads in my cancer journey.
Do you see it as a cancer journey or do you see it as an overall journey that transcends cancer, pain, and struggle....I was never really impressed to bring you up in my prayers until now...after seeing your sweet picture and realizing just how alive and valuable you are!
Any way I could conceivably say thanks will never be enough, but I will say it... THANK YOU ALL!
It is we who also thank you! Thank you for being alive! Thank you for being among us...we also thank the amazing people who care for you professionally and who also live their lives to the fullest and the utmost. You represent the triumph of life...you represent hope...and I am grateful to be able to talk with you---even on an anonymous internet...which suddenly seems more personal than it has been previously.
add by edit: I am off work today...watching movies...I just watched Lincoln with Danial day Lewis...it was a well done flick. Also bought Cowboys & Aliens...an odd one but I love watching actors and actresses celebrate human life through their craft and art!
Edited by Phat, : No reason given.
Saying, "I don't know," is the same as saying, "Maybe."~ZombieRingo It's easy to see the speck in somebody else's ideas - unless it's blocked by the beam in your own.~Ringo If a savage stops believing in his wooden god, it does not mean that there is no God — only that God is not wooden.(Leo Tolstoy)
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.
I'm so sorry to hear that the result was not what you hoped for. Where I live in Victoria there is a world class cancer centre. They also have a program called POG which is a last ditch effort to get rid of cancer.
... 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.
As I said on facebook, there is the option of taking a vaccine vacation to cuba.
You should also look into the (non-halucinogenic) oils from canabis in shrinking tumors.
And I'm sure you have heard more than enough about diet ... but stay away from sugars (they feed tumors) and sugar precursors (starches).
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.
That's great Asgara. Mine has gone well as well. The type of cancer I had, (olfactory neuroblastoma), often recurs I have been ok so far. I had the surgery in May 2015 and finished radiation Jult 2015. (No chemo.)
The 10 hr surgery I had with both an ENT surgeon and a neurosurgeon went really well and the margins were negative. I have had 2 MRI's since then and they have both shown clear. I continue to see the ENT surgeon every 3 months and that will likley go on indefinitely.
With all of the renovation done in my sinuses and in the cribriform plate below the brain I have not had many issues.
The radiation brought on some problems of which most have cleared up, but I still need surgery for a Zenker's Diverticulitum which will happen some time later this year which was likely caused indirectly by the radiation.
However life is really good and it is better to be looking down at the grass than up at the roots.
The future for cancer treatment keeps looking brighter all the time so I think we can still make 100 eh.
He has told you, O man, what is good ; And what does the LORD require of you But to do justice, to love kindness, And to walk humbly with your God.