Not ready - Page 3

Jackie07 · 06-08-2013, 04:52 PM

That sure was tough! Glad you 'survived' the procedure. Take it easy now. We are all rooting for you.

michka · 06-08-2013, 11:57 PM

CoolBreeze, I am so happy it is over. You are really courageous. My oncs explained the procedure in details and I thought I would never be able to do that. I am sorry you had to suffer.
Now they can shoot at the stupid met and it will never come back! Michka

Paula O · 06-09-2013, 03:17 AM

I'm so glad that procedure is behind you and hope it is very successful.

Cheering for ya,

Paula

NEDenise · 06-09-2013, 04:03 AM

Wow, Ann!
Another hurdle jumped...on to the next one!
Keep going strong...and thanks for taking the time to share the details...it's so important for those who follow to know what to expect.
Hope that horse morphs into a soft cuddly bunny next time it kicks!
Denise

vballmom · 06-09-2013, 06:04 AM

I'm so glad this step is behind you. I'm sorry that you had so much pain! I hope today you are already feeling better.

lkc Gumby · 06-09-2013, 12:38 PM

Congratulations on getting through this procedure. I Knew it would be painful, from my Mom's experience ( She said she would never have it done again too) But You did it, and now that's past. The soreness should resolve , but if you have continued difficulty breathing or shortness of breath, please let your doc know straight away.
As for the rude nurse, I am continually astounded by the lack of compassion in health care workers in the medical field towards patients that especially need gentle kindness. I truly hope and pray that you are now headed in the direction of a good and efficacious treatment plan.

SusanN · 06-09-2013, 01:09 PM

My prayers are with you beautiful girl...you are AMAZING...sending you HUGE HUGE HUGS!!! <3

norkdo · 06-10-2013, 04:37 AM

Praying for you, Ann. xo

KsGal · 06-11-2013, 01:49 AM

Hey Ann...just wanted you to know I was thinking about you this morning and sending prayers. Are you starting to feel any better?

Patb · 06-11-2013, 01:08 PM

Thinking of you and what you went through. I hope
each day is a little better and mainly that the procedure
works for you. Take care
patb

KDR · 06-11-2013, 02:15 PM

What hell! So glad this is behind you and wish you a peaceful recovery.

Karen

ammebarb · 06-11-2013, 03:31 PM

Thinking of you too, Ann, and keeping you in prayer.

Barb A.

CoolBreeze · 06-11-2013, 05:29 PM

Thank you ladies. I so appreciate your kindness.

Yes, today I am not hurting anymore and silly me, I spent the entire day cleaning out a room. My husband and son were using that spare room as their computer room and I decided that I wanted it back as my scrapbooking room, so I'm taking it over.

I took all their stuff out, picked up soda cans, found a bunch of missing spoons, cleaned up broken electronics, moved books, and started putting my scrap stuff away.

When the pain in my side starts,, I sit down. But I haven't had this kind of energy in years, probably because I'm so far out from chemo, so I wanted to do it while I can.

Tomorrow I have chemo again, darn. So there goes my energy. It was nice while it lasted! If this SBRT works and I can get off chemo for a while, my whole life can be like this again! Even though I know it won't last forever, it would be wonderful......

BonnieR · 06-11-2013, 07:26 PM

My theory is that you should not waste a feel good day by cleaning!!! But if it gave you satisfaction....go for it
I just wanted to drop in and tell you how much I love and admire you.
As a former nurse, I am appalled at the way you were spoken to. I really hope there is someone in authority to whom you can complain and report her. She has no business in patient care
Meanwhile, keep keeping the faith

Hopeful · 06-12-2013, 06:29 AM

Ann,

I am glad you got the good day you had yesterday, and spent it in a way that was meaningful to you. I wish you the best of luck with your treatment plan and will be watching for updates from you.

Hopeful

cheery · 06-12-2013, 07:32 AM

Glad for your update and to hear your energy level's up, even for a day.

Quick question out of curiosity, I've just seen a radiation onco and he was telling me SBRT is non-invasive as it does not involve putting in probes. But you've got probes put in? I'm scheduled for SBRT in mid July if liver scans are clear

guess you're going to be trailblazing the way for us.

CoolBreeze · 06-12-2013, 12:40 PM

Cheery, the actual SBRT is non-invasive. It's just a radiation beam, you can't see or feel it. Other things they do for liver, like ablation, need open access to the liver and they use probes to burn away tumor, etc. There are side effects to SBRT though - it can cause gastro problems, chest wall pain, fatique.

What I had wasn't a probe, it was a marker. They put them around the tumor so that it can be tracked through your breathing cycle. It was invasive to put those markers in, but only minimally, not like a surgical procedure (which I have also done).

Now I don't understand your sentence - you said you were going to have SBRT if your scans were clear? My understanding is they are destroying tumor tissue, they won't do it on regular tissue, which is what will happen if you get clean scans. They need to be able to see tumor to do this procedure. They do it on people like me, who have only been partially successful with chemos, or people early in mets who only have a met or two that they can get to. They like the tumor to be around 3 cm; that's the size they say they can destroy easily. So I am confused by what you just said - maybe you are having something different? How would they do SBRT with no tumor?

cheery · 06-12-2013, 07:59 PM

Thanks vm for the clarification, Coolbreeze. Hmm..there was no talk of needles to be put in during the discussion with the radiation onco. I'll have to give him a call on this. Having read your posts, the needles don't seem very friendly

And sorry for the confusion re the liver scans. I'm trying to zap off one tumour so the clear liver scans should show no other complication than that one tumour. He was telling me that he'd an earlier patient who had to abort as her MRI scan was not favourable.

The side effects, as I understand, is dependent on where the tumour is. Mine's on the edge so it might give me mild bone fractures as the worst case scenario. FYI only.

ETA - my initial tumour was 4.5cm and he's going to burn off all of it though it's now 1cm. This is to ensure we get all the diseased tumour tissue.

CoolBreeze · 06-12-2013, 08:46 PM

Yeah, Cheery, I'd be curious to know why yours is different than mine. Everything I read says fiducials are always placed when SBRT is in the liver but it might be that yours is so easy to get to that it isn't necessary? (Mine is wrapped around the portal vein)

Or, maybe you are having a different type of radiation procedure? There are several things they can do for us liver metsters now, maybe you aren't having the gamma knife/cyber knife type thing?

SBRT is a very high dose of radiation, so you only need a few sessions, unlike the kind that you get after lumpectomy where it's a low dose with lots of sessions. I think they said I would have five "fractions," done a couple of times a week (I think).

I would ask anyway, it's worth a question.

And if they say you have to do it, don't freak out. It is not a fun procedure for sure but it's not the worst thing that's ever happened and you'll be fine. Maybe you respond to versed and fentynl better than I do. The versed is supposed to make you forget and I have never, ever forgotten anything they've done to me on it. Lots of people seem to feel like these procedures are only painful afterwards.

If your liver biopsy was painless, than this will probably be painless too.

Good for having your tumor shrink so much! That's awesome. I bet this will kill it dead, never to return.

JillaryJill · 06-13-2013, 07:25 PM

Ann, you are an amazing lady. You are in my thoughts.