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Old 02-21-2009, 01:28 PM   #1
StephN
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Question The "radio" in my head ...

We have had some conversations lately here as to how we deal with our diagnosis and attitude adjustments as we go along through our treatments and beyond.

Something in those posts triggered a realization that I had still been suppressing those cancer voices and fears as hard as ever. This takes a LOT of energy!

When I was diagnosed stage IV I had my CD player going for hours at a time, or turned the TV on when I was not really intending to pay attention to that. This distraction made it difficult to concentrate on things that I used to be able to do quite easily. This is NOT chemobrain, but seemed to go along with it.

Even with plenty to do to occupy my time, that radio with the cancer messages kept playing in my conscious mind. I think I have finally learned to turn it down low, but don't know if I can ever turn it OFF.

This phenomonon seems to part of the "chronic" aspect of this disease. And makes it hard to shake off and move around without those annoying cancer "public service announcements" interrupting my day.

Just thought I would put these thoughts out for others in case they also see this cause and relationship in their lives.
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"When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau
Live in the moment.

MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
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Old 02-21-2009, 03:12 PM   #2
Faith in Him
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Thanks Steph. It is good to know that we are not alone in our feelings. I too suffer from what you describe. I don't think anyone else would understand except for those of us that have walked in these shoes.

I am still very distracted by the cancer radio. The worest for me is when my school aged children are wanting to talking to me but I am not able to concentrate on what they are saying because I am thinking cancer. Of course, I am still in treatment so that may be why.

I wish I could learn to turn it down low like you have. Maybe in time.

Tonya
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DX 02/01/07
2.5 cm, Er/Pr-, Her2+++
18/20 Nodes
03/07 CT & Bone scan - Clear
AC x 4, Taxol x 4, Added Herceptin
Radiation until 09/07
Herceptin every 3 weeks until 06/08
01/10/08 local recurrence -IBC
01/28/08 CT & Brain MRI - clear
02/08 - Navelbine & Herceptin
05/08 -MRM
05/08 - Gemzar & Herceptin - didn't work
09/08 - Hyperthermia rads
03/09 - Tykerb/Xeloda
05/10 - Tram flap to fix wound
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Old 02-21-2009, 07:27 PM   #3
vickie h
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Hi Steph,

I have listened to the same radio stations you have mentioned for quite some time. Just yesterday, I disolved into tears when the "music" or "message" was so overwhelming. I think, lately, that the state of the world comes into play when being reminded (quietly) about my own cancer. That is when the fear rises up...not so much because of my own health, but because the "health" of the world appears to be failing and that affects me greatly.

My husband and I are involved with a homeless shelter here so we see firsthand the breakdown in our societal attitudes towards others. It is at those times that the radio gets a little louder and harder to turn down.

However,your message reminds me to keep my fingers on the dial, to empty the fear like a bucket of cold rainwater after a storm. And to keep forging ahead. Who knows? maybe someday we'll hear Beethoven or Stravinski, instead.

Thanks for the message, Steph. I truly appreciate everything you bring to this site. Love, vickie
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Life's not about waiting for the storm to pass,
It's about learning to dance in the rain.


Feb 04 IBC IIIC/IV er-/pr- her2+++
3/04 TCH X4
7/ 04 MRM 9/04 Taxol/herceptin wkly 1 yr 33X rads
11/04 skin mets 33x rads,10/05 Avast/Herc. 11 mos.
8/ 06 PET mets lymphs, neck
9/ 06 Navelbine/herceptin
11/ 06 PET NED
2/ 07 skin mets, 4/07 Xeloda, 5/07 add Tykerb
2/ 08 Tykerb failed. Doxil /Herceptin 6 months
8/08 PET skin mets, 8/08 Abraxane/Avastin
11/ 08 PET prog., skin mets
1/09 PET/CT progress, 1/09 Ixempra, 2/09 add Xeloda and low dose Naltrexone
2/09 off Ixempra/Xeloda
3/09 navelbine/herc/cytoxin 4/09 PET shows regress.7/09 start Topotecan. Failed.
8/09 extensive mets rgt brst, back and torso. starting Pazopanib clinical trial.
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Old 02-24-2009, 05:18 AM   #4
fullofbeans
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Hey Steph interesting.. What I find hard at the moment is the inability to plan: part of me (the head) says this is the last few years of your life (according to the stats) so make the best of it, and I do not care about "building" and pension & retirement is a word from the past..

Another voice (the heart) is telling me to build and put some hard work into it and who knows what will come out of it..dare dreaming of past goals that seemed impossible after the diagnosis and to which I have already mourned for, and found alternative ones. But building can be stressful specially with stage 4 circumstances and I am very aware of not straining me..

Not sure what my goals should be anymore, surviving and having a good time is suddenly no longuer enough, I have been and still am enjoying myself very much but something is starting to be lacking.. That said I am so very grateful too off course, which well, takes the perhaps necessary edge of wanting. A certain degree of disatisfaction I beleive is often necessary to change course..

Hey what the hell maybe I can do both! As it is starting to be stressful not to build..
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35 y/o
June 06: BC stage I
Grade 3; ER/PR neg
Her-2+++; lumpectomies

Aug 06: Stage IV
liver mets: 6 tumours
July 06 to Jan 07: 2*FEC+6*Taxotere; 3*TACE; LITT
March 07- Sept 07: Vaccination trial (phase 2, peptide based) at the UW (Seattle).
Herceptin since 2006
NED til Oct 09
Recurrence Oct 2009: to internal mammary gland since October 2009 missed on Oct and March 2010 scan.. palpable nodes in May 2010 when I realised..
Nov 2011:7 mets to lungs progressing fast failed hercp/tykerb/xeloda combo..

superior vena cava blocked: stent but face remains puffy

April 2012: Teresa Trial, randomised to TDM1
Nov 2012 progressing on TDM1
Dec 2012 blockage of my airways by tumours, obliteration of these blocking tumours breathing better but hoping for more- at mo too many tumours to count in the lungs and nodes.

Dec 2012 Starting new trial S-222611 phase 1b dual egfr her2+ inhibitor.



'Under no circumstances should you lose hope..' Dalai Lama
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Old 02-24-2009, 06:45 AM   #5
Mary Anne in TX
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It's that goofy "what if" message that interrupts all decisions. I have to talk out loud to myself to drown it out sometimes. Makes me crazy. Surely am glad I am around to hear it and fight it! ma
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Grateful for each and every day....

Diag. 12/05 at age 60
Stage II, Grade 3, 4.5 cm primary tumor
ER/PR- Her2 +3 strongly positive
Her2 by FISH 7.7 amplified
vascular invasion
Ki67 20% borderline
Jan - March '06 Taxotere/Adriamycin X 3 to try to shrink tumor - it grew
April '06 Rt Modified Radical Mas, 7 of 9 nodes positive
April - Aug. '06 Herceptin/Taxol/Carboplatin X 8 (dose dense)
Sept - Dec. '06 Navelbine/Herceptin x 8 (dose dense)
Radiation & Herceptin Jan. 22 - March 1, 2007
Finished Herceptin Dec. 10 '08! One extra year.
Port removed August, 2012.
8 1/2 years since diagnosis! 5 1/2 Years NED!
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Old 02-24-2009, 06:57 AM   #6
MJo
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Interesting. Like fullofbeans, I don't know what my goals should be any more. Even though I was Stage 1, every once in a while I tune into that radio station and the feeling becomes overwhelming. This morning I thought to myself "What if I do exactly what I want to do with my life?" Interesting thought. Have to figure out what it is.
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IDC, Stage I, Grade 2
Oncotype DX Score 32
Her2++ E+P+, Node Neg.
Lumpectomy 11/04/05 Clear Margins
3 Dose dense AC (Couldn't tolerate 4)
4 Dose dense Taxol & Herc. (Tolerated well)
36 weeks Herceptin (Could not complete one year due to decrease in MUGA score)
2 years of Arimidex, then three years of Femara
Finished Femara May 2011
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Old 02-24-2009, 08:47 AM   #7
sarah
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Stephanie,
I send you a big cyber hug and thank you for all the help you've given me and others on this site. I find reading books the best distraction - TV is too depressing or bad!
sorry you're having this anxiety.
hugs and love sarah
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Old 02-24-2009, 09:56 AM   #8
Shobha
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The radio is quite loud in my brain still and the only time I can able to lower the volume is when my 6 and 5 years old are around. As soon as they leave, it automatically gets loud.

I try to imagine their graduation, wedding and usually dissolve into tears. Then, I have to consciously push myself to think positive.

The other part of it is that I want to be on top of things but find the medical system frustrating. They will not do any scans or even blood tests after the completion of the treatment and this makes every ache and pain a threat in my mind. It causes so much restlessness.

love,
shobha
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DX: 06-30-2007 - left breast -stage IIIB, Her2/Neu 3+++, ER weakly positive, PR-
Taxol+herceptin weekly for 3 months
FEC+herceptin every 3 weeks for 3 months
BRCA 1 and 2 - Negative
Jan 2008 - Bilateral mastectomy, prophylactic Rt. side.
Radiation for 5 weeks
Completed my yr of herceptin on 07-14-2008
Brain MRI - 3/2/09 Clean
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