Thanks and apologies

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skypup
Posts: 2598
Joined: Mon Dec 17, 2012 12:12 pm

Re: Thanks and apologies

Postby skypup » Tue Apr 01, 2014 11:25 pm

Thanks, everyone! (((my friends)))

I now have the songs from Frozen going through my head --- LOVE that movie! There was a sing-along version in the theaters for a while. Couldn't get anyone to go, but I bet a bunch of living-in-the-moment cancer patients would!

Thanks, OSM, the pain will wear a person down. At least it hasn't gotten worse, and I get periods when it is better. Frustrating, though. It is SOOO good to see your name on here again!

So much love here… cancer can't steal that.

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Cherie
Posts: 590
Joined: Fri Jul 12, 2013 11:20 am
Facebook Username: cherie
Location: New Zealand

Re: Thanks and apologies

Postby Cherie » Tue Apr 01, 2014 11:37 pm

So Skypup let us know how you are doing you know we don't judge.

I hope all is well.
36Yo F
2000 UC
2013 Stage 4 CC 15/126 LN spread to the omentum
June Collectomy all visible cancer removed
July Folfox + Avastin
2/14 clean scan
8/14 Ileo-anal pouch surgery still NED
1/15 Emergency illeostomy spread to peritoneum and small bowel

skypup
Posts: 2598
Joined: Mon Dec 17, 2012 12:12 pm

Re: Thanks and apologies

Postby skypup » Wed Apr 02, 2014 12:06 am

Hi Cherie. My story may have different details, but the basics seem really similar for all of us stage IVers, I think. The reality of what it means to be dying from cancer, albeit slowly (which I am grateful for), is continually sinking in more and more. Tom's recent post spoke to that so well; he is in the middle stage, it seems to me. I remember so much of what he is feeling. I have crawled past the "Who am I now?" question, now that I am no longer the worker, the planner, the mountain trekker, the walker, the dog agility player, on and on I/we could go. So "who I am" becomes simply a person who gets to walk between worlds for an extended period of time. (Or not actually walk much, as the case may be. Ha!)

The chemo is doing it's job, I am stable with continued shrinkage and dropping CEA. There is a small chance the MDA liver docs will be willing to do something aggressive now, a couple of liver resections or SIRspheres, I guess (not curative, so I'll get the goods on that if it is offered to me). I'll know more soon. In the meantime, I have to be happy that my biweekly poisoning and its three days of despair are keeping me at a place where I get a week of feeling okay. That's a trade-off I can still make.

Pain. If any of you are dealing with this, take heart and be very proactive! I asked to see a pain mgmt doc 3 months ago. It was so wonderful to talk to someone whose focus was on the very thing that oncologists seem to just accept without paying much attention to. He found an opiod that doesn't make me sick and too dopey. I won't take it during the day unless I'm really needing it b/c it does make me feel weird, but at night it's a pretty wonderful floating weirdness. I'm sleeping better than I have in years, albeit with some very strange dreams. I jokingly call going to bed retreating to my own private opium den. At least I do with people who know me well enough to recognize the humor and irony in me saying something like that.

Hope that wasn't too much. Thanks for asking, Cherie. I've been following your story, of course.

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Maia
Posts: 2443
Joined: Fri Aug 24, 2012 8:00 am

Re: Thanks and apologies

Postby Maia » Wed Apr 02, 2014 6:29 am

Skypup wrote:So much love here… cancer can't steal that.


Amen to that. : )
Skypuppy, I don't feel you owe me thanks or apologies so I'm just saying: happy to see you here again. Image

Pain. If any of you are dealing with this, take heart and be very proactive! I asked to see a pain mgmt doc 3 months ago. It was so wonderful to talk to someone whose focus was on the very thing that oncologists seem to just accept without paying much attention to.


And amen to that too. Nobody should be in pain, at any stage of this journey. Doctors have the tools to manage that but, yes, patients/ caregivers have to be proactive, sometimes very proactive. That's great advice, Sky, thanks for saying that.

dianne052506
Posts: 1651
Joined: Sun Nov 02, 2008 11:57 pm
Location: North Carolina

Re: Thanks and apologies

Postby dianne052506 » Wed Apr 02, 2014 10:48 am

Skypup, the only apology you owe to me is for not posting enough! I enjoy hearing from you and your posts lift my spirits. I hope nothing has happened to bring on your feeling a need to apologize. We are all on a journey through hell. Sometimes we manage it with grace, sometimes not.
The last two days I have been whiny lump on a log, but reading about Traveler001 has given me something of an attitude adjustment. Since I don't know how little time I have, I need to be sure i am acting in the way i want to be remembered. Eric's grace and humor were a wonderful example.
hang in there, skypup.
Dianne
May 06 Stage IV CC: liver,ovarian mets
Oct 07 inoperable lung mets
Feb 08 - Apr'12 chemo
allergic to oxaliplatin, irinotecan
Aug '12-Feb'14 Genentech PD-L1/Avastin trial
Mar '14 -radiation to largest lung nodule
still recovering; looking at trials again

dianne052506
Posts: 1651
Joined: Sun Nov 02, 2008 11:57 pm
Location: North Carolina

Re: Thanks and apologies

Postby dianne052506 » Wed Apr 02, 2014 12:32 pm

Idina Mendel from Frozen was also on Broadway in Wicked. The song For Good from Wicked about friendship is one of my "funeral" songs. Part of the lyrics (can't figure out how to copy a link while on the smart phone) is about apologies.

And just to clear the air
I ask forgiveness
For the things I've done you blame me for

But then I guess we know
There's blame to share

And none of it seems to matter anymore.

Helping each other on this jouney is all that really matters.
Dianne
May 06 Stage IV CC: liver,ovarian mets
Oct 07 inoperable lung mets
Feb 08 - Apr'12 chemo
allergic to oxaliplatin, irinotecan
Aug '12-Feb'14 Genentech PD-L1/Avastin trial
Mar '14 -radiation to largest lung nodule
still recovering; looking at trials again


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