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Old 11-02-2013, 07:48 AM   #1
NEDenise
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Location: Philly Suburbs
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Re: NEDenise Downer Alert!

Ann - I feel your pain (from the fall at least). Feeling older than my years sucks! Dirty house sucks too... but I'm learning to live with it.

Doc called yesterday... among other things I'm sure...
I have a UTI that wasn't showing overt symptoms because of all the steroids.
Maybe it's wishful thinking on my part, but I actually think my blechy-ometer score might be a tiny bit lower after only one hefty dose of Cipro.

God! Wouldn't it be AWESOME if all this latest crap were related to something as easy to fix as an infection!?
I still have to have all the nasty tests to rule out other, more terrifying possibilities...
but... a little hope to hang my hat on is a beautiful thing.

You know me... hate going to that "dark place"... worrying about my beautiful boys facing young adulthood without the unconditional love of Mom. Nothing can replace that, and I'm just not willing to let that go!! They may look like men at 14 and 16... but they're still my babies.

So... sick reality that we all embrace around here... I'm actually cheered up by a raging infection... I don't even care if it's spread to my blood! Still waaaay better than the alternatives on the short list and the scary mention of WBR again.

The weaning is on hold though. Fall risk is too great (trust me... it's like watching a baby learn to walk... people want to stand behind me to catch me!) So I'm back to 8mg/day with some talk of even bumping that higher next week if need be. Whatever! Again, with the waaaaay better than the other terrifying alternatives thing!

So friends... thanks for checking in and for all the encouragement.
I hope all of this isn't TMI...
but...
I guess no one has to read if they don't want to...
and maybe all this shared info will help someone else down the line... at least I hope so.

Love to all! Hugs to those who need them most!
And prayers... lots of prayers!
Denise
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Old 11-02-2013, 03:25 PM   #2
dawny
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Location: Geelong, Australia
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Re: NEDenise Downer Alert!

NEDenise, YAY infection, woohoo. Let's cheer for an infection lol. I really hope that's all it is, and you start to feel like yourself again. I don't like to hear the fear in your words, fingers crossed for you Denny.
Dawn xxxx
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Dx May 27 2011, age 43
Stage 1V 3.6cm breast lump, spot on lungs, nodes chest + neck
HER2+ ER/PR-
Abraxane weekly - 16 weeks
Herceptin every third week
September 26 2011 N.E.D!
Herceptin ongoing
8th Dec 2011 Brain MRI - clear
20th Dec 2011 bone/cat scan clear still NED
April 2012 scans show axillary node lump - ? what to do...
June 2012 Axillary node dissection 1/11 nodes affected, a wide local excision shows DCIS. Now what to do again? Watch and scan 3 monthly
April 2013, two spots in nodes to chest wall, start TDM1 (Kadcycla) as part of clinical trial
July 2013 stable
Oct 2013 progression off TDM-1 (Kadcycla)
Nov 2013 radiation to lymph nodes in sternum
Dec 2013. Mastectomy right side, pathology shows tumour was HER-2 negative, no wonder TDM-1 (Kadcycla) didn’t work!
April 2014 NED. On Herceptin only
August 2014 NED. On Herceptin only
March 2015. NED. On Herceptin only
September 2015 NED on Herceptin only
March 2016. Pulmonary embolism, Clexane injections daily forever. Still NED On Herceptin only
Nov 2016. Bone Mets in ribs - Radiation. Don’t know if bone Mets are er-/pr-/HER2+ or triple negative.
Can’t give self injections on to tablets (Xarelto) for blood clots.
2017 NED - On Herceptin only
2018 NED - On Herceptin only
2019 NED - On Herceptin only
2020 NED - On Herceptin only
2021 NED - On Herceptin only
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Old 11-02-2013, 05:53 PM   #3
Andrea Barnett Budin
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Location: LAND OF YES! w/home in Boca Raton, Florida Orig from L.I., N.Y. Ever hovering IN THE NOW...
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Re: NEDenise Downer Alert!

Yes, double yay for the uti. Let's blame it all on that. Until proven otherwise -- which won't happen. Sorry you have to go through all those tests. Just to prove you're okay.

I have been there. Feeling sick all the time. Weak. Frail. I saw myself as a fragile person. I began to unconsciously treat myself as an invalid. Until I woke up and realized I had to stop that. Stop the visions of my babies (who were full grown, but still my babies) without me. I didn't want to miss a single holiday, birthday, whatever.

And that's when I started to learn, or re-learn, the power of our thoughts. Guided imagery is serious business. We don't want our worst nightmares to come true. We have to THINK FROM THE END, meaning when we are through the process and at our desired goal! We have to see ourselves not as weak, though we are not stupid, and know that the precarious steps we take say so much. We have to determine that we are not buying into the story that is presenting itself.

Realists don't succeed. Einstein reminded us that Imagination is greater than intelligence.

So imagine yourself well and healthy. This reminds your body to remember what it feels like to be well and healthy. Our reasonable brains can hardly recall how that feels, but our bodies definitely do. They can replicate the symptoms of being well and healthy!

We can't think, I am know I am going downhill, this is it, the end is near. That is wrong-thinking! Detrimental to our health.

When we're in the process of getting to our dream, we will have crappy days on top of lousier days, but -- we are making our way to our desired finish line!

Don't allow negative thoughts to rent space in your brain, please. For your own good. Cause what you think, will come to be. So use your power for your highest good.

Don't let your unwanted thoughts rule your life. Plant some seeds and watch them blossom in front of your eyes!

With love,

Andi
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Andi BB
'95 post-meno dx Invasive LOBULAR w/9cm tumor! YIKES + 2/21 nodes. Clear mammo 10 mnths earlier. Mastec/tram flap reconst/PORT/8 mnths chemo (4Adria/8CMF). Borderline ER/PR. Tamoxifen 2 yrs. Felt BLESSED. I could walk and talk, feed and bathe myself! I KNEW I would survive...

'98 -- multiple mets to liver. HER2+ 80%. ER/PR- Raging, highly aggressive tumors spreading fast. New PORT. 9 mnths Taxotere Fought fire w/fire! Pronounced in cautious remission 5/99. Taxotere weekly for 6 wks, 2 wks off -- for 9 mnths. TALK ABOUT GRUELING! (I believe they've altered that protocol since those days -- sure hope so!!)
+ good old Vit H wkly for 1st 3 yrs, then triple dosage ev 3 wks for 7 yrs more... The "easy" chemo, right?! Not a walk in the park, but not a freight train coming at 'ya either...

Added Herceptin Nov '98 (6 wks after FDA fast-tracked it for met bc). Stayed w/Vit H till July '08! Now I AM FREE! Humbly and eternally grateful for this life-saving drug! NED since '99 and planning on keeping it that way. To hell w/poor prognosis and nasty stats! STOPPED VIT H JULY '08...! REMAIN STABLE... Eternally grateful...Yes is a world & in this world of yes live (skillfully curled) all worlds ... (e e cummings) EVERY DAY I BEAT MY PREVIOUS RECORD FOR # OF CONSECUTIVE DAYS I'VE STAYED ALIVE. Smile KNOWING you too can be a miracle. Up to me and God now...
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