CarynRose
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Topic: CarynRose
Posted By: Nancy
Subject: CarynRose
Date Posted: Oct 23 2008 at 3:25pm
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Ladies,
I just read CarynRose's carepage, and her hubby did the update. This morning when Caryn was brushing her teeth she could not spit to rinse, nor could she get her face to smile. He said she recognized what this might be and called 911 and had herself taken to Robert Wood Johnson.
She had a CAT scan and it showed nothing...( he jokingly said oh c'mon you know what I mean!). The story Caryn related to the medicos strongly suggest a TIA...mini stroke. She still has a dull headache and ringing in the ears and tomorrow they will do another test.
Her hubby said that prayers and warm thoughts are welcome.
Just thought you all would want to know.
Nancy
------------- Nancy
DD Lori dx TNBC June 13,2007
Lumpectomy due to incorrect dx of a cyst
mastectomy July 6 2007
chemo ACT all 3 every 3 weeks 6 tx Aug-Nov
28 rads ended Jan 2008
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Replies:
Posted By: Nancy
Date Posted: Oct 23 2008 at 3:29pm
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I just saw where Beth Anne posted about Caryn on the Welcome New Members forum. I just got on the site and didn't see it.
Nancy
------------- Nancy
DD Lori dx TNBC June 13,2007
Lumpectomy due to incorrect dx of a cyst
mastectomy July 6 2007
chemo ACT all 3 every 3 weeks 6 tx Aug-Nov
28 rads ended Jan 2008
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Posted By: Cheryl51
Date Posted: Oct 23 2008 at 5:32pm
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I just want to give a shout out to CarynRose....I'm sending love and light.
Cheryl51
------------- Diagnosed 3/07, Stage IIB, Grade 3, 2/10 nodes positive
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Posted By: Beth Anne
Date Posted: Oct 24 2008 at 4:24am
Nancy,
Thank you for posting here... I am still trying to figure out how to start a new topic...

All my best for Caryn
 
Beth Anne
------------- Dx 5/07 DCIS Stage3 gr9 A/C x 6, Abrax x 16 Bi-Mass 2/08
Navelbine x 12, finished radiation end of July 08. DX Brain Met's 2/09StageIV
CK3/09.Brain resection4/09 WBR
Dreaming of dancing with Ned!
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Posted By: Ronda
Date Posted: Oct 24 2008 at 7:31am
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Thanks Nancy for posting,
Big hugs and warm wishes for a speedy recovery Caryn! I'm lighting a candle for you today and praying that this is a minor set back. My sister in-law had 2 strokes at 35 and has made a full recovery. This is my prayer for you.
Love,
Ronda
------------- DX 3/07 IDC Trip neg, stage 2b, SN biopsy 3 node neg. No vascular invasion, Mast 4/07 AC+T DD Finshed 8/07 BRCA 1, Proph Mast 10/07. Reconst & Prophy Hyst. 10/08
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Posted By: trip2
Date Posted: Oct 24 2008 at 2:00pm
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Thank you Nancy,
CarynRose heal quickly! You are in my prayers.
------------- Stage 2 2003
Stage 1 2007
BRCA 1+
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Posted By: Nancy
Date Posted: Oct 24 2008 at 2:52pm
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Hey all,
Update on CarynRose.................I am typing what her husband Steve wrote.
Her dear hubby....says:
Caryn had her two tests today...MRI and MRA, and they came back clean. While the jury is "still out", per se, the MD's are calling this a definite vascular incident. In layman's terms, for some reason, blood flow was restricted to the brain, which affected the nervous system...at least that's my understanding of it. All of this seems related to the Avastin which definitely affects the growth of blood vessels. And, it turns out that the facial paralysis was really on the LEFT side (there's still no smile there and that cute dimple is gone).
Caryn is resting comfortably tonight and she and I were both able to get Reiki massages today (Thank you Misha and Deb). She'll be staying in RWJUH until at least Sunday. Phone calls, visits and prayers continue to be most welcome.
Steve
Warm wishes for a speedy recovery Caryn,
Hugs, Nancy
------------- Nancy
DD Lori dx TNBC June 13,2007
Lumpectomy due to incorrect dx of a cyst
mastectomy July 6 2007
chemo ACT all 3 every 3 weeks 6 tx Aug-Nov
28 rads ended Jan 2008
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Posted By: Jessie
Date Posted: Oct 24 2008 at 4:11pm
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You're in my thoughts Caryn, also you, Steve. This has to be very scary for you. I'm so glad you have good doctors who are watching you closely.
Hugs to you both,
Jessie
------------- IDC,Stage I,Grade 3,dx 4/06
dbl mast 5/06,
systemic MRSA post surgery
septic shock, heart attack
triple bypass 1/07
no chemo due to infections and heart issues
so far NED!
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Posted By: NancyJane
Date Posted: Oct 25 2008 at 4:14am
Dear CarynRose:
Know that you are in my thoughts and prayers. Much love and light being sent your way  !!
------------- 41yr dx 7/25/08
Lumpectomy and ax node disection (38 nodes, all clean!) 8/12/08
T2 grd 3, N0, TN IDC
BRCA1+
ACx4,Tx12 10/08-3/09
prophylactic hyst, ooph,mast & one-step recon 3/30/09
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Posted By: Nancy
Date Posted: Oct 27 2008 at 4:34pm
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Update on CarynRose...
Just got this from Caryn's carepage from her hubby:
More news
Posted 7 minutes ago
Ok folks...here's the latest
Caryn had the Lumbar Puncture (hereafter referred to as the LP) today. They (whomever 'they' are) did not find any proteins that would serve as an indicator of spinal METS (metastases), but they did record an elevated white blood cell count, which brings us back to.....
...an indication of some sort of (viral) infection. So we are back to Bell's Palsy or a similar condition brought about, most likely, by the use of Avastin. The theory is that the Avastin activated a chronic condition which previously lay dormant.
Stay tuned to this channel for further updates....I now return you to your previously scheduled AOL , or other ISP, session.
Steve
No wonder Caryn is always in such an upbeat mood....no matter what....her hubby must be the greatest!! 
Nancy
jQuery(document).ready(function(){
})
------------- Nancy
DD Lori dx TNBC June 13,2007
Lumpectomy due to incorrect dx of a cyst
mastectomy July 6 2007
chemo ACT all 3 every 3 weeks 6 tx Aug-Nov
28 rads ended Jan 2008
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Posted By: trip2
Date Posted: Oct 28 2008 at 6:38am
Thank you Nancy!
------------- Stage 2 2003
Stage 1 2007
BRCA 1+
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Posted By: billie
Date Posted: Oct 28 2008 at 7:35am
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Hey CarynRose,
We miss you terribly and we all wish you a fast recovery.Lots and Lots of Hugggggssss from all of us. Billie
------------- Billie posting for sis Betty/67/caucasion female/diagnosed 2-27-08/gradeIII/7mm/invasive ductal carcinoma/T N /clear margins/node neg/4 X's taxotere-cytoxan/36 rads/7-08 PET/CT double image/no cancer
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Posted By: Nancy
Date Posted: Oct 28 2008 at 5:27pm
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Another update from Caryn's husband Steve, and on her carepage.
Oct 28th
Posted 2 hours ago
Dear Diary,
After waiting for the cleaning ladies to finish here, I got over to the hospital. My parents had gone over several hours ahead of me. When I got there, two 'clown volunteers' were entertaining the room and I joined in. Apparently, Caryn had 2 clowns yesterday as well, so thanks to all 4 of you for lifting the spirits and for clowning around. I was also delighted to notice a significant increase in the non-indegenous flora (translated: flowers that people have sent) in the room, including a lovely arrangement from my Kingston co-workers.
As for Caryn's condition.....well, 'they' are continuing to examine the spinal fluid for the root cause of what would appear to be Bell's Palsy. Caryn's face is definitely drooping more which means it'll be tougher to smile when people come to visit. Still looking into the 'dormant virus awakened' theory or the 'bacterial infection' theory.
That's all for tonight, dear friend. Mom and Dad will visit in the morning and then drive back to MD, and I'll be there to visit after work.
------------- Nancy
DD Lori dx TNBC June 13,2007
Lumpectomy due to incorrect dx of a cyst
mastectomy July 6 2007
chemo ACT all 3 every 3 weeks 6 tx Aug-Nov
28 rads ended Jan 2008
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Posted By: Nancy
Date Posted: Oct 29 2008 at 5:17pm
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This just in from Steve...Please read!!!
Update
Posted 34 minutes ago
Hello All,
We got some rather disturbing news today from the oncologist at RWJ. Apparently, further studies of the spinal fluid revealed the presence of atypical cells. To a cancer patient like Caryn, atypical =cancer. They are supposed to do a second tap tomorrow. Suffice it to say this is not at all good.
At this point, I do not know exactly what comes next, but what I do know is that I MUST make this URGENT appeal to family and friends...Caryn is feeling very afraid and very small right now and she needs you...I am begging you...visit, call , send flowers, send cards, send prayers....please.
Steve jQuery(document).ready(function(){ })
------------- Nancy
DD Lori dx TNBC June 13,2007
Lumpectomy due to incorrect dx of a cyst
mastectomy July 6 2007
chemo ACT all 3 every 3 weeks 6 tx Aug-Nov
28 rads ended Jan 2008
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Posted By: Bunnysmama
Date Posted: Oct 29 2008 at 6:23pm
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Nancy, I've been off the site for a while and just saw this posting. Please let me know how I can get in touch with Caryn. She has been so strong and positive for all of us, and she deserves to know how much love and support she has from us in return.
Caryn, you are in my thoughts and prayers.
------------- Dx 11/06 @ age 37
IDC
Stage I, Grade 3
BRCA2+
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Posted By: Nancy
Date Posted: Oct 29 2008 at 6:33pm
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Another update from Steve....
Address
Posted 14 minutes ago
For those of you who have asked for it, Caryn's address is:
Patient Caryn Rosenberg Room 4227 c/o Robert Wood Johnson University Hospital One Hamilton Health Place Hamilton, NJ 08690
Thank you thank you thank you
jQuery(document).ready(function(){
})
------------- Nancy
DD Lori dx TNBC June 13,2007
Lumpectomy due to incorrect dx of a cyst
mastectomy July 6 2007
chemo ACT all 3 every 3 weeks 6 tx Aug-Nov
28 rads ended Jan 2008
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Posted By: Sadie Rose
Date Posted: Oct 29 2008 at 6:55pm
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Nancy- Thank you for sharing this information. I am getting a card out tonight.
Sadie
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Posted By: trip2
Date Posted: Oct 30 2008 at 8:09am
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Nancy thank you so much!
My card is on the way and CarynRose you are in my prayers that this second tap is a clear one.
------------- Stage 2 2003
Stage 1 2007
BRCA 1+
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Posted By: Sadie Rose
Date Posted: Oct 30 2008 at 12:07pm
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CarynRose,
Thinking of you today. Sending positive thoughts your way~~~~~~~.
Warmly,
Sadie
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Posted By: Jessie
Date Posted: Oct 31 2008 at 8:01am
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Nancy,
Thanks for the address.
CarynRose and Steve,
I'm sending my prayers for your peace and strength.
Love and hugs,
Jessie
------------- IDC,Stage I,Grade 3,dx 4/06
dbl mast 5/06,
systemic MRSA post surgery
septic shock, heart attack
triple bypass 1/07
no chemo due to infections and heart issues
so far NED!
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Posted By: Bunnysmama
Date Posted: Oct 31 2008 at 8:15am
I sent a card out to her today. Does anyone have an update on how she's doing? I'm hoping and praying for some good news!
------------- Dx 11/06 @ age 37
IDC
Stage I, Grade 3
BRCA2+
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Posted By: Nancy
Date Posted: Oct 31 2008 at 8:17am
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Bunnysmama,
I have not had an update on Caryn's carepage.....nothing has come through. I keep checking every time I sit down at the computer. Steve did not update the page last night. Perhaps she went home? Don't know, but I will post as soon as I get it.
Nancy
------------- Nancy
DD Lori dx TNBC June 13,2007
Lumpectomy due to incorrect dx of a cyst
mastectomy July 6 2007
chemo ACT all 3 every 3 weeks 6 tx Aug-Nov
28 rads ended Jan 2008
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Posted By: Lauriejn
Date Posted: Oct 31 2008 at 8:28am
There's been another update. We need to gather around Caryn and family big time.
------------- Dx Oct2008- IDC Gr 3/Stage 3C
Mastectomy 11/7/08- 6/21 nodes
Bone Mets dx Dec 2008-Stage 4
Albany, NY BRCA neg
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Posted By: Nancy
Date Posted: Oct 31 2008 at 8:29am
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The update from Steve....just got it
No More Doubt...It's back
Posted 6 minutes ago
OK Folks,
This is it...the oncologist came by about an hour agototellus that they found somecancer cellsin Caryn's cerebral spinal fluid (CSF). With nomore to be done hereat RWJUH,I'll likely br bringing her home tomorrow (SAT) and westillplan to go to AC Sun-Tues. Afterthat,we needyou....visit,call,send cards,etc tothe house...if ever Caryn has touched you, touched your life, made a difference, you need to make a difference for her now.
As for next step, we will be consulting with CTCA and will likely be having a shunt installed in her skull(like a port) so the chemo can be put directly into the spine. I can honestly tell you all that we are very scared and we don't know how much time we have.....please please please visit, call,whatever before it's too late.
Steve
jQuery(document).ready(function(){
})
------------- Nancy
DD Lori dx TNBC June 13,2007
Lumpectomy due to incorrect dx of a cyst
mastectomy July 6 2007
chemo ACT all 3 every 3 weeks 6 tx Aug-Nov
28 rads ended Jan 2008
|
Posted By: trip2
Date Posted: Oct 31 2008 at 8:46am
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Oh Nancy I feel so terribly bad about reading of CarynRose's latest news.
I can feel her husband's fear and desperation in his posts.
Ladies, please send cards or call CarynRose, she really needs us now and she has helped all of us at one time or another. She has been a tremendous asset in this forum.
When I was in the hospital a couple of weeks ago I cannot begin to tell you what all those cards sent by some of you meant to my spirit and gave me that extra support that makes a big difference!
PM me or Hayley, Nancy, and we will give you her address. She needs us now to support her! Please!!
------------- Stage 2 2003
Stage 1 2007
BRCA 1+
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Posted By: Ronda
Date Posted: Oct 31 2008 at 9:32am
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Had to edit this, because I just read the post about her cancer being back....I'm heart broken. I sent her a card yesterday.
Ronda
------------- DX 3/07 IDC Trip neg, stage 2b, SN biopsy 3 node neg. No vascular invasion, Mast 4/07 AC+T DD Finshed 8/07 BRCA 1, Proph Mast 10/07. Reconst & Prophy Hyst. 10/08
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Posted By: Nancy
Date Posted: Oct 31 2008 at 10:54am
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Ronda,
2boysmom posted about Caryn on the Mets forum also, so maybe more gals will see the latest and let Caryn know how much we care about her.
Nancy
------------- Nancy
DD Lori dx TNBC June 13,2007
Lumpectomy due to incorrect dx of a cyst
mastectomy July 6 2007
chemo ACT all 3 every 3 weeks 6 tx Aug-Nov
28 rads ended Jan 2008
|
Posted By: Nancy
Date Posted: Oct 31 2008 at 3:16pm
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Ladies,
Please if you want Caryn's home address, just pm me, Pam or Hayley.
Caryn,
If you see this please know that you are in my thoughts and prayers as always. You have shown so much love and concern for everyone on this site, and have always tried to steer the gals in the right direction, by giving all of us the honest truth.
Love,
Nancy
------------- Nancy
DD Lori dx TNBC June 13,2007
Lumpectomy due to incorrect dx of a cyst
mastectomy July 6 2007
chemo ACT all 3 every 3 weeks 6 tx Aug-Nov
28 rads ended Jan 2008
|
Posted By: Sadie Rose
Date Posted: Oct 31 2008 at 3:25pm
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CarynRose,
Sending you care and concern tonight. Hope you are resting and able to feel the warm thought being sent for you and your lovely family.
Sadie
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Posted By: sibu
Date Posted: Nov 01 2008 at 10:47am
Bumping up, in case people missed it during the week.
Caryn has been such a force of warmth, intelligence and strength on this board. I hope she is flooded with cards and kind words in these difficult moments.
------------- Donna, age 42
Dx IDC 12/06, 5/18 Nodes + BRCA1+
Double mast. 1/07
Chemo 6 X TAC 6/07, rads 10/07
Hyst./Recon. 12/07
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Posted By: Nancy
Date Posted: Nov 02 2008 at 5:30pm
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Her is Caryn's carepage update.
Caryn,
Much love your way sweetie. Lori and I are praying for you and we send many loving thoughts and cyber hugs tonight.
Love Nancy
Atlantic City a No Go
Posted 5 hours ago
Disclaimer: This central nervous system stuff is screwing with my typing and spelling. I'm doing the best I can, but please excuse my quasi-English.
Well, we had the best intentions. I didn't want to let cancer get the better of me in terms of living my life, but after 3 hours of trying to take a shower and dressing, I experienced an extreme fatigue and weakness that I've never had before. I couldn't even manage to raise my voice loud enough so Steve could hear me. And I had a stomach ache, something that I'm not known to have.
The thought for me was that if my central nervous were shutting down, that it would also be affecting my internal organs.
And so, we called CTCA and we're heading there for triage tomorrow. They said pack a bag because they might admit me.
This seems to all be happening so quickly, but right now, I don't have details and so I'm trying to just 'be' with what is happening and trying not to let the fear overwhelm me.
I don't know how often I'll be posting, but I wanted to update you.
Love, Caryn
jQuery(document).ready(function(){
})
------------- Nancy
DD Lori dx TNBC June 13,2007
Lumpectomy due to incorrect dx of a cyst
mastectomy July 6 2007
chemo ACT all 3 every 3 weeks 6 tx Aug-Nov
28 rads ended Jan 2008
|
Posted By: Cheryl51
Date Posted: Nov 02 2008 at 7:30pm
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Holding you in healing light, Caryn.
Cheryl51
------------- Diagnosed 3/07, Stage IIB, Grade 3, 2/10 nodes positive
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Posted By: Bunnysmama
Date Posted: Nov 03 2008 at 3:55am
Caryn, you are in my heart and on my mind. Be strong! I'm sending warm hugs your way.
------------- Dx 11/06 @ age 37
IDC
Stage I, Grade 3
BRCA2+
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Posted By: Sadie Rose
Date Posted: Nov 03 2008 at 4:06am
Caryn,
Visualize a warm healing light surrounding you with all of our caring thoughts for you. Have someone throw a blanket in the dryer to heat it and then wrap up in it. Feel the warmth.
Sa
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Posted By: Sadie Rose
Date Posted: Nov 03 2008 at 4:07am
Caryn,
Visualize a warm healing light surrounding you with all of our caring thoughts for you. Have someone throw a blanket in the dryer to heat it and then wrap up in it. Feel the warmth.
Sadie
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Posted By: trip2
Date Posted: Nov 03 2008 at 4:43am
Caryn, sending healing cyber hugs.
------------- Stage 2 2003
Stage 1 2007
BRCA 1+
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Posted By: Nancy
Date Posted: Nov 03 2008 at 9:19am
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update from Caryn
HERE WE GO ----
Posted 13 minutes ago
OK, I'm at CTCA. Was admitted today in waiting to get to Temple in Philadelphia to have an Omaya Reservoir installed in my head. That will enable us to directly infuse chemo into my cerebro-spinal fluid and eliminate the few cancer cells that they have found there.
OK, so how did we get here? Those who are familiar with cancer know that when someone is given systemic chemo, it usually doesn't cross something called the brain/blood barrier. That means that as they were giving me what they were last year, it was getting at the cancer 'from the neck down', and quite well, thank G-d. However, there were probably ALWAYS seeds of cancer that ended up in my central nervous system. They weren't reached by the systemic chemo and they lay in wait, unseen. According to Dr. Willis, only a very few cancer cells pressing or bothering on nerves can cause a rather pronounced reaction, and this is what he thinks is happening in the case of my facial paralysis.
Anyway, right now, the plan is to use methotrexate into the CSF (cerebro-spinal fluid); however, there are other things that Dr. Willis has up his sleeve, including bringing in radiology for possible tomotherapy and using an oral chemo (don't have the name off the top of my head, but it begins with a T, I think. It's supposed to make chemo more effective on breast cancer cells.
How it will work: (disclaimer -- if you are queasy, skip this part, but in the interest of full journalistic expression, here goes). Each chemo treatment will begin with them creating a sterile field on the top of my head. They will withdraw a small amount of CSF and replace the same amount with chemo. On a regular basis, they will test the CSF for cancer cells and adjust as necessary in terms of frequency and amount. I don't know how long this will go on, but the shorter period of suffering, the better. I'm told from start to finish, the entire chemo treatment would be about an hour or so??? I don't know what happens to me after that. Do I stay at CTCA? Do I stay at a local hotel? Do I go home?
They just came into the room and told me that I may be going over to Temple University Hospital this afternoon for surgery first thing tomorrow and then watching my healing there for a day or so. Then, possibly starting chemo at Temple.
From what I understand, this will probably be the hardest chemo I've ever had. I've been so lucky up til now -- very little nausea, living more or less vertical for most of the treatments, etc. They think that this one might knock me down for the count somewhat more. And I'll have a shunt in the top of my head.
I think what Steve and I will need is a lot more logistical help than we have in the past. I don't know what it will look like, but I know that there will be times when he'll have to be at work and caring for our home, doggie, his dear, dear self, his folks, his daughter, my mom, etc., etc. and I'm gonna need someone by my side to help advocate for me. I know that many of my family members are far away and very busy, but I am asking you to please try to see yourselves clear to maybe schedule time to come to NJ or PA (it's not that far) and help out.
To those who live in the Philly/South/Central NJ area, I'd love for you to visit. I don't know how I'll be, but having you around just helps me. I might not be a great conversationalist, but feeling your presence and energy will help me heal. And, it's a great thing to do for the soul... LOL.
I feel all your love and your prayers and surely if that is all it takes, this cancer thing will be beat. For now, however, there is lots of medical work to be done; lots of red tape and ridiculous BS to be surmounted to get a cure for cancer. And not enough is being done. We MUST do what we can to grease the treads. And maybe that starts with voting tomorrow in the US. I'll tell you that my choice is Barack Obama because I don't think that the republican plan will allow for the incredible increase in research that is necessary to move this forward.
Maybe I can be the first BRCA1+/triple negative stage 4 CURE.
Love, Caryn
jQuery(document).ready(function(){
})
------------- Nancy
DD Lori dx TNBC June 13,2007
Lumpectomy due to incorrect dx of a cyst
mastectomy July 6 2007
chemo ACT all 3 every 3 weeks 6 tx Aug-Nov
28 rads ended Jan 2008
|
Posted By: Jessie
Date Posted: Nov 03 2008 at 12:11pm
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Caryn and Steve,
How I wish I were already retired so I could come north and be your "nanny/advocate". You're right, you need an advocate by your side always.
Yes, my (absentee) vote was for Obama because he has the vision and the drive to make things better. His history with his mother no doubt heightens his desire to see that research is enhanced and treatments are available to all.
Know that you have the care and concern of all of us. My prayer for you and Steve is the same I prayed for myself when the path was tenuous --- that you are given strength, serenity, and peace during your battle.
Love,
Jessie
------------- IDC,Stage I,Grade 3,dx 4/06
dbl mast 5/06,
systemic MRSA post surgery
septic shock, heart attack
triple bypass 1/07
no chemo due to infections and heart issues
so far NED!
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Posted By: cg---
Date Posted: Nov 03 2008 at 12:26pm
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Dear Caryn,
You are our heroine. Your attitude, your kindness, your advocacy make all of us stronger women. I thank you.
I suspect that you will be given Methotrexate and Thiotepa (not available in Canada for breast cancer unless special access permission to obtain and then they have to buy it from Bedford Pharmaceuticals).
Did they mention using folinic acid (leucovorin) it can be used as an enhancer with methotrexate or as a chemoprotectant from the side effects.
Topotecan is being looked at in Phase I clinical trials for breast cancer.
Anything you want researched have Steve send out a message and we will look up anything you need.
Love,
Connie
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Posted By: Nancy
Date Posted: Nov 03 2008 at 1:30pm
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Dear Caryn,
Please know that I cannot get you out of my mind. Not that I am trying, sweetie, but I keep looking at your picture, and see a woman who has endured so much and yet continues to give back daily to others in need.
When our grandson had chemo, he had the spinal fluid drawn and then the chemo infused in that spot. He too had methotrexate.
We will be here for you anytime you want to post. As Connie said...tell Steve to just ask.
Much love and many many hugs,
Nancy
PS....my vote and my husband's vote ....for Obama....
and....Ronda has threatened to jump off a bridge if he doesn't win 
------------- Nancy
DD Lori dx TNBC June 13,2007
Lumpectomy due to incorrect dx of a cyst
mastectomy July 6 2007
chemo ACT all 3 every 3 weeks 6 tx Aug-Nov
28 rads ended Jan 2008
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Posted By: NancyJane
Date Posted: Nov 03 2008 at 2:33pm
Caryn, my dear, I am showering you with love, light and positive energy from sunny Key Largo. Feel the healing energy surround you .
------------- 41yr dx 7/25/08
Lumpectomy and ax node disection (38 nodes, all clean!) 8/12/08
T2 grd 3, N0, TN IDC
BRCA1+
ACx4,Tx12 10/08-3/09
prophylactic hyst, ooph,mast & one-step recon 3/30/09
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Posted By: thinkpositive
Date Posted: Nov 03 2008 at 3:26pm
Caryn and Steve,
Please know that we are all thinking of you as you go through this very difficult time. Our prayers and love are with you. You inspire us all as you face this challenge. Lots of hugs and good wishes.
------------- dx 3/06 stg II 0/7 lymph
bilateral mastectomy 7/06 AC/Taxol lung mets 1/08 Avastin Abraxene 02/08/9/08
Brca neg Avastin Xeloda 10/08
Curagen 2/09 Ixempra 6/09 Lung Mets
Gemzar/ Carboplatin 9/09
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Posted By: asinglerose
Date Posted: Nov 03 2008 at 6:08pm
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Caryn
I never had the pleasure to know you but I have said a prayer for you and I am sending powerful positive energy your way.
Aleida
------------- Aleida
dx 8/22/08, TNBC, IDC,
Lumpectomy/10/6/08 right breast/ 8mm/
clear nodes/ clear margins/ Stage1/ TAXOTERE/CYTOXAN every 3 weeks X4/ 45 RADS!
PRAYING FOR THE BEST!!
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Posted By: sicknurse
Date Posted: Nov 03 2008 at 7:46pm
Much love and prayers to you, Caryn and family! Get well soon!
------------- sicknurse
dx: 12/07 Left breast St.II,TNBC,BRCA neg
1/08-5/08 ACT chemo
7/28/08 Lumpectomy,3 nodes - NO CANCER!
9/08-10/08 Radiation
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Posted By: Nancy
Date Posted: Nov 04 2008 at 7:57am
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This is the latest from Caryn...
Caryn,
We all will continue to send those inspirational thoughts your way. We care deeply about you and Steve.
Nancy
Heading to Temple in a few minutes...
Posted 49 minutes ago
Well, I've had my chest exray, my acupuncture treatment, Reiki, and am now waiting for them to come get me and bring me to Temple University Hospital.
I feel like I've done all I can to prepare my body, mind, and spirit for this next step and so now I leave it in G-d's hands. I can feel all of your prayers and support.
I love you all.
Caryn
jQuery(document).ready(function(){
})
------------- Nancy
DD Lori dx TNBC June 13,2007
Lumpectomy due to incorrect dx of a cyst
mastectomy July 6 2007
chemo ACT all 3 every 3 weeks 6 tx Aug-Nov
28 rads ended Jan 2008
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Posted By: peach
Date Posted: Nov 04 2008 at 8:46am
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Caryn,
Thank you so much for the wealth of information you always share with us. I always look forward to reading your post.
It sounds like you are in good hands and your Docs know what they are doing. Take care of yourself and stay strong.
Love and prayers.
Pat
------------- Dx 5/07 TNBC
IDC Stg.2, Gr.2,
Sentinel node 0/1 BRCA-
Lumpectomy,Chemo(AC-T DD)Rads
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Posted By: caro36
Date Posted: Nov 04 2008 at 9:38am
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Dear Caryn, please know you and your husband are in my thoughts and prayers. lots of love, strength and cyber hugs.
Caroline
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Posted By: Nancy
Date Posted: Nov 04 2008 at 7:38pm
|
an update from Caryn
Caryn,
Obama has won and now perhaps there will be change....for all here on the site and for all those diagnosed with cancer...for you dear Caryn.
Love,
Nancy
In Temple
Posted 3 hours ago
How cute is it that a Jewish woman goes to Temple (Univ Hosp) for surgery?
Please send all the prayers and love and blessings and good thoughts that you can muster in Caryn's direction (face towards Philadelphia).
You are all such a treasure to us both
jQuery(document).ready(function(){
})
------------- Nancy
DD Lori dx TNBC June 13,2007
Lumpectomy due to incorrect dx of a cyst
mastectomy July 6 2007
chemo ACT all 3 every 3 weeks 6 tx Aug-Nov
28 rads ended Jan 2008
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Posted By: Nancy
Date Posted: Nov 05 2008 at 4:48pm
|
an update from Caryn's husband Steve
Hole in the Head
Posted 24 minutes ago
Well, as the PREGO sauce commercial says, it's in there. When Steven (brother -in -law) and I left the hospital, Caryn was resting comfortably (well as comfortable as possible), taking small sips of apple juice. I believe they're going to be giving her some morphine to take the edge off and then tomorrow she'll be returned to CTCA where, hopefully, we can start the chemo by Friday.
It's been a truly hectic day or so, with changes in surgical times, the move and surgery, the excitement over the election, and as an extra bonus.....I popped a crown and post right out of my mouth (where else would it have been?) last night. I will have it replaced, hopefully with real good cement, in the morning, before driving down to Philly.
Our thanks to all of you for your prayers, thoughts, e-mails, phone calls, flowers, with a special mention to my folks for driving up from Maryland to support me today and my brother-in-law for coming down to spend the afternoon in the surgery waiting room.
Steve
------------- Nancy
DD Lori dx TNBC June 13,2007
Lumpectomy due to incorrect dx of a cyst
mastectomy July 6 2007
chemo ACT all 3 every 3 weeks 6 tx Aug-Nov
28 rads ended Jan 2008
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Posted By: Terri
Date Posted: Nov 06 2008 at 7:59pm
|
Caryn,
I`m hoping you are feeling well and will be able to have the chemo tomorrow (or today really). We all are sending our love and good energy that everything will go well. 
Love, Terri
------------- IDC DX 8/17/07 (age 41)
Stage 1 Grade 1-2, 1.35 cm
2 nodes neg, Lumpectomy 10/07
Chemo: FEC 100 x 6, 35 rads
BRCA 1/2 NEG
PET/CT & Brain CT Nov 09
Brain MRI Aug 2012 NED
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Posted By: Nancy
Date Posted: Nov 07 2008 at 7:14pm
|
an update from Caryn
Caryn,
you are an amazingwoman, and I can visualize the meds as sunshine because we know you as our ray of sunshine here. I and Lori will be visualizing you as well and healthy and back here giving all that wonderful advice to so many new gals.
Love,
Nancy
Today's Treatment
Posted 3 hours ago
This morning Dr. Willis came into my room and told me that we would start treatment today. He really feels like the task at hand is to physically put chemotherapy (methotrexate) onto the cancer cells in the lining of my central nervous system. He wants to be aggressive about this and so we'll be doing the treatments once a week for at least 4 sessions.
He had his nurse practitioner Deb come to my bedside, gown up, and sterilize the area at the top of my head. Then, she withdrew about 5cc of CSF and put it into vials for it to be analyzed by the lab and cytology to measure amount of cancer cells and just give us a general starting point. Then, she replaced the 5 ccs with 5ccs of methotrexate, which I call 'liquid sunshine' because of its bright yellow color. As she added it to the resevoir at my head, I imagined fresh, cleansing sunshine pouring down through the top of my head, swishing through all the nooks and crannies, washing out all the little corners and linings, causing any cancer cells to stop growing and stop multiplying and washing them away, while allowing healthy nerve cells to grow and function. Sort of like 'weed and feed.'
While Deb was doing this, Carol, my Reiki nurse, stood by my side and applied gentle Reiki, while the CareChannel played soothing music. Then, both before and after, we were visited by various chaplins/pastors. Sister William shared water from Lourdes with me and prayed for my complete restoration of health.
And then, I sat and let it start to work. Had a bit of a headache for about 10 minutes afterwards. Got really tired for most of the afternoon, but was relieved to be starting the process of healing.
Next, Dr. Willis wants me to look into tomotherapy radiation as well as using an oral chemo called something like Tiperal? It's shown promise for improving the effectiveness of breast cancer treatments like radiation and other chemos. And so, I'm up for it.
We also discussed that in my case, we are going to be really proactive, acting on any indication of recurrence because my body shows it up relatively early and so we can use chemo to 'keep me chronic.' WOW! Can you imagine trying to treat Stage 4 triple negative breast cancer as CHRONIC??!! Will it be hard? Sure. Because all we have at this point for triple negative is chemo, but if you treat early and often, maybe that is workable until their next step.
Nice to see that Dr. Willis is thinking out of the box. The other day, he even mentioned toying with some Avastin in my head.
Sue F -- I wonder if there is any interest in shoving some PARP inhibitor up there. Do any of your contacts have data on that? Would you also please remind our Advocacy panel gentleman (I think from Sloan) that we are working chronically here and any help he wants to provide to keep me on schedule to attend my nephew's bar mitzvah in 11 years.
And, so tonight, there are still neurological deficits that we don't know whether they will or won't go away. And so, I sort of have a 'new normal' for life -- a new face; less ability to hear; eyesight slightly askew; difficulty speaking; slight paralysis from the waist down. There are physical, speech, and occupational therapy options for me and a strong, strong spirit to keep me going. And that spirit is buoyed my your support, love, and prayers.
But, it's all LIFE and that is good.
Much, much love, Caryn
------------- Nancy
DD Lori dx TNBC June 13,2007
Lumpectomy due to incorrect dx of a cyst
mastectomy July 6 2007
chemo ACT all 3 every 3 weeks 6 tx Aug-Nov
28 rads ended Jan 2008
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Posted By: trip2
Date Posted: Nov 08 2008 at 5:53am
Thank you so much Nancy for bringing these to our forum.
------------- Stage 2 2003
Stage 1 2007
BRCA 1+
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Posted By: TriciaL
Date Posted: Nov 10 2008 at 5:45am
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Caryn,
I saw you post and am sending positive energy your way.
I work at TomoTherapy in Madison, WI and saw this may be a potential treatment for you. If you have any questions or want further info, please feel free to write privately or post.
We have had some tremendous ladies with Stage IV breast cancer who whose doctors had not previously given them alot of hope. Two are Andrea and Pam...They sought second and third opinions and were their own best advocates. They eventually got treated with TomoTherapy, based on their (new) doctors' advice, and were in Madison this past summer to share their stories.
There stories are on the TomoTherapy website
http://www.tomotherapy.com/patient/profiles/pt_prunge/ - http://www.tomotherapy.com/patient/profiles/pt_prunge/%22
We still keep in contact, and when they agree, we can put other women in their situtation in touch with them.
Very best to you as you undergo your treatment,
Tricia
mailto:tluedtke@tomotherapy.com -
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Posted By: Cheryl51
Date Posted: Nov 10 2008 at 6:30am
|
Hey Caryn,
You are just amazing!! I'm sending lots of healing energy your way. I completely believe in the visualizations and other vibes that you are pulling into your life.
Love and light,
Cheryl51
------------- Diagnosed 3/07, Stage IIB, Grade 3, 2/10 nodes positive
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Posted By: Nancy
Date Posted: Nov 10 2008 at 7:15am
|
Ladies....I neglected to post this from yesterday. I apologize. I know that Caryn had posted on the mets forum to CalGal yesterday.
Nancy
Sunday Morning
Posted 1 day ago
After a relatively peaceful night, I woke this morning to my, what appears to be, regular AM headache. Waiting for the nurse to bring the percocet. It will help. My plans today are simple. I just want to get out of bed, clean myself, and perhaps dress in street clothes.
I notice that my mind is working slower. Logical actions take longer to form and be acted upon. Normal reactions to situations take a while to make themselves apparent to me. I don't remember to eat, take my meds, etc. I pray that this will subside as the cancer subsides.
I do remember that with previous chemo, there was a jump in tumor marker measurement that seemed somewhat scary until we were reminded that it was my body's way of sloughing off the dead cancer. Let's hope the muddled-ness is just an indication of that.
Certainly, the spirit is still in there.
Love, Caryn
jQuery(document).ready(function(){
})
------------- Nancy
DD Lori dx TNBC June 13,2007
Lumpectomy due to incorrect dx of a cyst
mastectomy July 6 2007
chemo ACT all 3 every 3 weeks 6 tx Aug-Nov
28 rads ended Jan 2008
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Posted By: Nancy
Date Posted: Nov 10 2008 at 10:47am
|
Just treceived this...and knew you would all want to read the update.
Nancy
I'M COMING HOME!!
Posted 27 minutes ago
I just finished speaking with my discharge nurse and as soon as Steve can get here this afternoon, I'm sprung. I'm definitely NOT 100% or anywhere near it. I'll be glad when I get to 50%. I'm very nervous about being able to remain vertical when standing at home and negotiate my stairs. That's why I'm so appreciative to those who will be coming to sit with me. And, in a day or so, I'll also have a home care nurse come to evaluate me for the care I need in terms of bathing, self care, etc. UGH!
It's an adjustment, that is for sure, but I'm up to rolling with the punches and doing what needs to be done.
We're also setting up physical, occupational, and speech therapy in hopes that I can steady my head and balance, and maybe get some return motion to my face.
Next steps: chemo on Wednesday; setting up home for our future beyond that.
More to come.....
Love, Caryn
jQuery(document).ready(function(){
})
------------- Nancy
DD Lori dx TNBC June 13,2007
Lumpectomy due to incorrect dx of a cyst
mastectomy July 6 2007
chemo ACT all 3 every 3 weeks 6 tx Aug-Nov
28 rads ended Jan 2008
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Posted By: SnoozBar
Date Posted: Nov 11 2008 at 1:30am
CarynRose,
I just got on this site a few months ago and just read this post from beginning to end. OH, what a strong woman you are. What a hero you are to all of these women on this site. I will be praying for you tonight. You are an angel.
Mary
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Posted By: Nancy
Date Posted: Nov 12 2008 at 2:02pm
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Just got an update from Caryn's carepage.
If someone knows her number...perhaps you can call to remind both Steve and her to eat. We all know what it is like to not feel well, and all of you gals know what it is like going through treatments. You don't want to eat....but you have to eat to maintain your strength.
Nancy
Oh G-d, this is hard
Posted 16 minutes ago
Going to be short. Can barely see to type. This is kicking the sh*t out of me; so weak. Helps when I eat, but we sort of forgot to get me food in time today.
But, keeping in mind that if this is what I feel like, imagine what the cancer is feeling.
We're going to have to figure out a better way to manage the logistics of this as running to Philly and back on THE treatment day isn't really working.
Please send healing prayers and ask G-d to remind me (and Steve) to eat.
Love, Caryn
------------- Nancy
DD Lori dx TNBC June 13,2007
Lumpectomy due to incorrect dx of a cyst
mastectomy July 6 2007
chemo ACT all 3 every 3 weeks 6 tx Aug-Nov
28 rads ended Jan 2008
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Posted By: becca
Date Posted: Nov 12 2008 at 3:40pm
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SENDING THOSE PRAYERS
------------- Age58 DX 12/07
Grand Junction, Colorado
Lumpectomy 1/08/08
Stage IIIA grade3
5/19 nodes
chemo 5/08 radiation 7/08
clear pet 9/08
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Posted By: Cheryl51
Date Posted: Nov 12 2008 at 3:54pm
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Caryn,
Prayers, love, light to you and Steve. I wish I could bring you a meal.....
I'm in your corner.
Love to you both,
Cheryl51
------------- Diagnosed 3/07, Stage IIB, Grade 3, 2/10 nodes positive
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Posted By: Nancy
Date Posted: Nov 13 2008 at 8:28am
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An update from Caryn.... feeling 50% better is a good thing.
Nancy
The Process
Posted 50 minutes ago
Well, it's day two and with food (thank you LDK and MA), company (thank you M and D), I'm hanging in there.
Steve helped me downstairs this morning and made me a nice 3 egg omlette and toast (bagels are my favorite comfort bread). Then, after he went to work, M came by to just sit with me while I slept. When I woke up, he and D were exchanging greetings and D continued to sit with me. She is going shopping today to get basic staples so I have whatever I need, whenever I'm hungry, so we don't run into situations like yesterday.
I'm weak, tired, but at least 50% better than I was yesterday.
I'm now waiting for the home healthcare evaluator to arrive so we can get me approved for a home health aide to help with my bathing and care as well as approval for PT, OT, and ST.
I think I'll take a nap til he/she gets here.
Love, Caryn
jQuery(document).ready(function(){
})
------------- Nancy
DD Lori dx TNBC June 13,2007
Lumpectomy due to incorrect dx of a cyst
mastectomy July 6 2007
chemo ACT all 3 every 3 weeks 6 tx Aug-Nov
28 rads ended Jan 2008
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Posted By: SnoozBar
Date Posted: Nov 13 2008 at 4:05pm
We are thinking about you Miss CarynRose, Sending all of our positivity your way.
Mary
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Posted By: CarynRose
Date Posted: Nov 13 2008 at 5:51pm
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You guys are amazing. Thank you so much for your support and your love. We received your lovely gifts and I will never, never, never, never, never, never, give up!!!
You are my wings ladies and when the strange thoughts start to cloud my mind and make me think things that I won't empower this journey, I remind myself of you and the fight that all of you have for me.
I love you all!!
Caryn
------------- Orig dx 6/03 - St.2a, IDC
gr.3,0 nodes, TNBC/BRCA1+
7/07 St 4 mets to nodes/lungs. PACA/Rads NED 11/07-10/08
Lepto mets 10/08
Rads for 4 brain tumors 4/10.
Leptomets return 6/10
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Posted By: Nancy
Date Posted: Nov 13 2008 at 6:14pm
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Dear Caryn,
I knew that you would like that!! We love you, as we do all the gals here, and you are truly an inspiration to anyone who ever reads your inspiring posts. Get well sweetie 
Love,
Nancy
------------- Nancy
DD Lori dx TNBC June 13,2007
Lumpectomy due to incorrect dx of a cyst
mastectomy July 6 2007
chemo ACT all 3 every 3 weeks 6 tx Aug-Nov
28 rads ended Jan 2008
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Posted By: Terri
Date Posted: Nov 13 2008 at 8:46pm
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Caryn,
I`m so glad you are feeling even 50% better  . You are an inspiration to all of us! Please be KIND to yourself, eat well and get all the rest you need. We will be here sending our love and support 
Terri
------------- IDC DX 8/17/07 (age 41)
Stage 1 Grade 1-2, 1.35 cm
2 nodes neg, Lumpectomy 10/07
Chemo: FEC 100 x 6, 35 rads
BRCA 1/2 NEG
PET/CT & Brain CT Nov 09
Brain MRI Aug 2012 NED
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Posted By: Ronda
Date Posted: Nov 14 2008 at 5:44am
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Caryn,
SMOOOOOOOOOCH!
Ronda
------------- DX 3/07 IDC Trip neg, stage 2b, SN biopsy 3 node neg. No vascular invasion, Mast 4/07 AC+T DD Finshed 8/07 BRCA 1, Proph Mast 10/07. Reconst & Prophy Hyst. 10/08
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Posted By: trip2
Date Posted: Nov 14 2008 at 6:22am
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Caryn,
Thank you! You have given so much to this forum and you bet we are fighting with you. 
------------- Stage 2 2003
Stage 1 2007
BRCA 1+
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Posted By: Cheryl51
Date Posted: Nov 14 2008 at 8:19am
Posted By: AustinCarol
Date Posted: Nov 14 2008 at 3:55pm
Caryn,
You go girl! 
Just keep on fighting this with all of your ability and we are all praying and send waves of positive thoughts to you.
PT, OT, ST can all be very effective.
-Carol
------------- Dx 01/06 DCIS LB (age 47) TN Stage 2a; High grade; MBRS 9/9; 4 cm; nodes neg; BRCA-
Tx neoadjuvant AC4 + T4 dose dense; Lump 06/06; 35 rads (7 boosts) 08/06
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Posted By: Nancy
Date Posted: Nov 15 2008 at 7:38am
|
an update from Caryn...
Still Healing
Posted 6 hours ago
I was soooooo taken care of yesterday. The outpouring of pure lovingkindness and nurturing are surely inspiring. From 8am until 5pm, whenever I opened my eyes, there was a wonderful angel watching over me, making sure I had whatever I might need. And then came dear Tara with her chicken soup and unbelieveable cheesecake, not to mention, wonderful care and conversation. June and Ken stopped by and so our fridge is FULL. As a matter of fact, I'm in the process of trying to buy a second fridge online this weekend.
Physically, I feel a bit stronger. There are still deficits that I'm noticing. I do have weakness in my legs and so going up and downstairs is a once a day thing and I can't take a step at a time. I have to put both feet on each step. (OK, I try to do the last few steps the old way -- my mantra is "as long as I can, I will"). My eyes are having trouble focusing and so I can see the TV and the computer screen, but every once in a while, I can't read print. Oh that is frustrating!
Today, Julia from CTCA has come by and is staying with me until Steve comes home from work. Then I'll clean myself up and we're heading over to see my Mom. I'm so eager to see her and hope that I don't scare her. Last night when I called she was so excited to hear from me, but also sooooo worried. It is obvious to me that she knows something is wrong. I'll just take it as it comes. I Fwon't mentioned the cancer returning, just that we tweeked my suppressant therapy and that it's kicking my but. Hopefully, with some makeup (try to apply THAT with poorly focusing eyes -- thanks to my Mom's lessons years ago, I think I can do it by feel and lots of blending), I'll be able to even up my face so that it won't be too obvious.
For now, I'm going to rest.
Love, Caryn
jQuery(document).ready(function(){
})
------------- Nancy
DD Lori dx TNBC June 13,2007
Lumpectomy due to incorrect dx of a cyst
mastectomy July 6 2007
chemo ACT all 3 every 3 weeks 6 tx Aug-Nov
28 rads ended Jan 2008
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Posted By: Cheryl51
Date Posted: Nov 15 2008 at 8:49am
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Dearest Caryn,
My dear departed mother used to constantly remind me that you had to "suffer to be beautiful" instilling in me the legacy of "if you can't be good or feel good, you can at least look good." God knows, I try  
Good luck with the make up. It sounds like you've got a lot of practice with it.
I'm thinking of you...sending love and light.
Cheryl51
------------- Diagnosed 3/07, Stage IIB, Grade 3, 2/10 nodes positive
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Posted By: Nancy
Date Posted: Nov 16 2008 at 9:34am
|
an update from Caryn...sorry this is late..
Nancy
My Visit with Mom
Posted 5 hours ago
We were able to get me to Mom's by late afternoon (took a while to shower, put on make up, 'energize'). I walked in as Mom was sitting at the table eating her dinner. Immediately, she was so happy to see me, but looked at me VERY critically. She was definitely seeing something different. And so, I just said, "Mom, do I look different?" And she nodded. So, at that point, I needed to deal with my facial issue.
I told Mom that we think that due to some side effects from my suppressant therapy, we irritated the facial nerve. I told her how it happened, when I was brushing my teeth. How they tested me for stroke, etc, and that I DID NOT have a stroke. She got it and seemed relieved with the explanation.
I told her that the headaches that I had been having were gone (OK, they are still there, but not bad, and are going away). I also told her that the suppressant therapy that we're still doing now sort of knock the heck out of me now.
She sat, holding my hands, with her eyes closed, and even though I couldn't understand the sounds she was making, I knew that she was praying to G-d to protect and care for me. I reassured her the best I could do, rubbed her back, and let her 'glet' me.
Here's what I know. Though I didn't say it, my mother knows that the cancer is back. I won't mention it to her and I'll get past this 'flare up', but Mom and I are too connected for her not to know. How it will affect her is up to G-d. I pray that we are both OK. I think we will be. I know that it's out of my control.
I'm sort of lounging this morning. Looking forward to seeing Beth and Larry this morning and brother Steve and Riesha later on.
And as always, Steve is by my side. Steven -- I know how hard this is on you and know that this is definitely NOT something in our plan. You are my prince and have really shown up to be there for me, us, and our family. I love you beyond words, honey.
Love, Caryn
------------- Nancy
DD Lori dx TNBC June 13,2007
Lumpectomy due to incorrect dx of a cyst
mastectomy July 6 2007
chemo ACT all 3 every 3 weeks 6 tx Aug-Nov
28 rads ended Jan 2008
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Posted By: Terri
Date Posted: Nov 16 2008 at 9:59am
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Caryn,
God bless you for trying to spare your mother from your latest battle. I understand having those feelings. I didn`t tell my mom when I was going through all the tests before dx even though I knew it was cancer deep down. Then I waited 3 days until I could see her in person to tell her. Her reaction was the most heartbreaking one of anyone I told. You are such an amazing beautiful person. 
I`m so glad you are surrounded by love at home. We are all with you holding your hand in spirit!
Love, Terri
------------- IDC DX 8/17/07 (age 41)
Stage 1 Grade 1-2, 1.35 cm
2 nodes neg, Lumpectomy 10/07
Chemo: FEC 100 x 6, 35 rads
BRCA 1/2 NEG
PET/CT & Brain CT Nov 09
Brain MRI Aug 2012 NED
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Posted By: Terri
Date Posted: Nov 16 2008 at 10:00am
|
Nancy,
Thankyou again for all the updates. I smile through my tears.
------------- IDC DX 8/17/07 (age 41)
Stage 1 Grade 1-2, 1.35 cm
2 nodes neg, Lumpectomy 10/07
Chemo: FEC 100 x 6, 35 rads
BRCA 1/2 NEG
PET/CT & Brain CT Nov 09
Brain MRI Aug 2012 NED
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Posted By: Cheryl51
Date Posted: Nov 16 2008 at 12:09pm
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Dearest Caryn,
I continue to be so moved by your courage and spirit. You are an inspiration.
I can totally relate to keeping issues contained around family members. I do this with my 15 year old son. I just don't talk about issues until all the tests are in. Why upset others with uncertainty? At the same time, I think that he, like you mother, know when things are off.
And Steve....you da man 
Love and light,
Cheryl51
------------- Diagnosed 3/07, Stage IIB, Grade 3, 2/10 nodes positive
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Posted By: NancyJane
Date Posted: Nov 16 2008 at 1:09pm
Caryn:
The beauty of your relatonship with your Mother is so apparent in your post. Love is a magical thing. Know that you and your family are in my thoughts and prayers.  !!!
------------- 41yr dx 7/25/08
Lumpectomy and ax node disection (38 nodes, all clean!) 8/12/08
T2 grd 3, N0, TN IDC
BRCA1+
ACx4,Tx12 10/08-3/09
prophylactic hyst, ooph,mast & one-step recon 3/30/09
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Posted By: CarynRose
Date Posted: Nov 16 2008 at 1:55pm
|
I'm not sure it is apparent with regard to my mother -- two years ago, she had a massive stroke and it left her unable to move her right side and unable to speak. Of course that never stops us from communicating, but given her medical situation, it makes no sense to burden her with all the details of my case right now.
Still, as I mentioned in my Carepage, I know that she knows and as she held my hand in hers and babbled/mumbled, I know that she was praying to G-d to heal me and protect me.
I have everything that I ever needed from my Mom and it lives inside me. She did a great job in 'growing me'. And, I got to tell her so.
Pretty cool.
Thank you all for your support and prayers. This fight continues!! That is, this fight FOR life!!!
Love ya,
Caryn
------------- Orig dx 6/03 - St.2a, IDC
gr.3,0 nodes, TNBC/BRCA1+
7/07 St 4 mets to nodes/lungs. PACA/Rads NED 11/07-10/08
Lepto mets 10/08
Rads for 4 brain tumors 4/10.
Leptomets return 6/10
|
Posted By: nosurrender
Date Posted: Nov 16 2008 at 7:05pm
((((Caryn)))) Just want you to know I am thinking about you and praying really hard. Love you, g
------------- www.nosurrenderbreastcancerhelp.com
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Posted By: Nancy
Date Posted: Nov 17 2008 at 12:03pm
|
an update from Caryn
Dear Caryn,
Please know that you are in my thoughts and prayers.
Love Nancy
Current Status
Posted 15 minutes ago
Well, today is Monday and I've had a nice opportunity to just hang out at home and sort of take stock of my current status. I don't know if my symptoms are from the CNS mets, the chemo that I'm getting for that, the post surgical side effects, but there are certainly deficits.
Firstly, I get tired VERY quickly. A walk to the bathroom or into the kitchen will cause me to need a nap for about a half hour.
I also am not seeing very well. My eyes can focus on the TV and with my glasses, I can sometimes see the computer, but I can't read any print in magazines or books. I certainly can't see puzzles or things like that.
My legs are weak, but I do have ok balance. I can climb the stairs slowly and it really winds me.
My face is still paralyzed. I can feel the left side of my face, and I can move my tongue, but I can't move the cheek, lips, and forehead.
My mind is much, much slower and I always feel 'spacey'. If I had to judge, it's like I've lost about 30 to 40 IQ points (I was 138 to start).
Steve makes jokes and I don't get them and have to ask him if he's serious.
I have a dull ache in my lower back and lack certain feeling in my bum and other areas, so that the need for certain bodily functions isn't always apparent.
I can still type, just can't focus on what I'm typing. (Thank Heavens for all those years of working in offices and having to learn to type -- ah the days when a woman couldn't get the Account Exec job without going through the secretarial pool first).
OK, I'm rambling.
Just wanted to report in.
Thanks so much to AG for coming to visit today. I think I'm strong enough now where I'm OK in the house alone as long as the home health aide comes. That should be starting very soon.
Love, Caryn
------------- Nancy
DD Lori dx TNBC June 13,2007
Lumpectomy due to incorrect dx of a cyst
mastectomy July 6 2007
chemo ACT all 3 every 3 weeks 6 tx Aug-Nov
28 rads ended Jan 2008
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Posted By: Cheryl51
Date Posted: Nov 17 2008 at 3:36pm
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Hey Caryn,
I check in every day to hear your "rambling".... keep it coming, girl. You're a 
Love and light,
Cheryl51
------------- Diagnosed 3/07, Stage IIB, Grade 3, 2/10 nodes positive
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Posted By: NancyJane
Date Posted: Nov 17 2008 at 3:40pm
|
Nancy:
Thank you so much for updating this post here.
Caryn, I derive so much strength from your posts. You are an inspiration. My heart fills with so much love, courage and hope as I read your thoughts. Know that all of us here are surrounding you with strength and healing energy, lots of 3N cyber positive power being sent straight to you!
Much love,
------------- 41yr dx 7/25/08
Lumpectomy and ax node disection (38 nodes, all clean!) 8/12/08
T2 grd 3, N0, TN IDC
BRCA1+
ACx4,Tx12 10/08-3/09
prophylactic hyst, ooph,mast & one-step recon 3/30/09
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Posted By: 3neg
Date Posted: Nov 17 2008 at 10:01pm
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Caryn..I've not been on here forever but was told of your situation. My heart goes out to you and I'm adding your name (Hebrew name was given to me) to our misheberach list.
------------- Laughter is the sun that drives winter from the human face.
---anonymous
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Posted By: Nancy
Date Posted: Nov 18 2008 at 9:30am
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an update from Caryn
This sounds really great ladies!! Way to go Caryn. I bet Rosie loved the walk also. 
Nancy
Physical Therapy
Posted 21 minutes ago
I'm exhausted as I write this, but pretty happy too. I just finished my first physical therapy session. We walked around the block with Rosie!! Took it very slowly; my therapist held Rosie's leash; but I did a walk around our block!!
Woo Hoo!!
Caryn
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------------- Nancy
DD Lori dx TNBC June 13,2007
Lumpectomy due to incorrect dx of a cyst
mastectomy July 6 2007
chemo ACT all 3 every 3 weeks 6 tx Aug-Nov
28 rads ended Jan 2008
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Posted By: trip2
Date Posted: Nov 18 2008 at 12:30pm
Ohhh that is flat wonderful! Way to go Caryn.
------------- Stage 2 2003
Stage 1 2007
BRCA 1+
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Posted By: Sadie Rose
Date Posted: Nov 18 2008 at 1:07pm
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Hi Caryn,
I am so glad you were able to go for a walk. Isn't amazing how important and rich being able to do every day things is. I hope yours strength builds up by leaps and bounds. Keep stepping. 
Warmly,
Sadie
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Posted By: Cheryl51
Date Posted: Nov 18 2008 at 1:17pm
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Caryn,
I'm so happy to hear that you were out walking...I know that must have felt absolutely great!
Cheryl51
------------- Diagnosed 3/07, Stage IIB, Grade 3, 2/10 nodes positive
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Posted By: Jessie
Date Posted: Nov 18 2008 at 4:10pm
Caryn,
You're amazing ! I've been through enough to know how much a walk outside can mean -- and how thrilling ! You're getting wonderful and comprehensive care. Your postings about your family are beautiful -- what love they show. All this should knock that devil cancer out! 
Thinking of you every day,
Jessie
------------- IDC,Stage I,Grade 3,dx 4/06
dbl mast 5/06,
systemic MRSA post surgery
septic shock, heart attack
triple bypass 1/07
no chemo due to infections and heart issues
so far NED!
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Posted By: Nancy
Date Posted: Nov 19 2008 at 7:31am
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an update from Caryn
Nancy
CTCA and TUH Today
Posted 4 hours ago
We're heading out to Philly today, first to Temple University Hospital to meet with the neurosurgeon to check out the hole in my head. He'll remove the staples (YAY, I can shampoo there!!) and, I suppose, release me. Then we head to CTCA for labs, chemo, FOOD (won't drop that out again), Reiki, and Acupuncture. After that, Steve will take me to the Radisson where I'll crash for the night. It will be good to have a soft place to land. My inlaws will meet us at the hotel and will stay over night as Steve comes home. Then, tomorrow, the three of us will drive home to Robbinsville. And then, I would imagine that I'll just chill Thursday.
Friday, OT comes and we'll work my balance, and maybe even retraining me in the kitchen. I really miss my cooking. It's such a nice creative outlet for me and I love tending and nurturing to Steve and Rosie and me.
Cheers, Caryn
PS -- also wanted to report that I'm feeling a little less 'spacey' as of yesterday. Still looking at the world through the Phantom of the Opera Mask, but my thought processes seem to be less cloudy. Thank G-d!!
------------- Nancy
DD Lori dx TNBC June 13,2007
Lumpectomy due to incorrect dx of a cyst
mastectomy July 6 2007
chemo ACT all 3 every 3 weeks 6 tx Aug-Nov
28 rads ended Jan 2008
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Posted By: Nancy
Date Posted: Nov 19 2008 at 5:46pm
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update ladies and this sounds really promising!
A sleep number bed and someone to cut your food for you...sweetie...you deserve to be spoon fed...with the silver spoon Caryn!
Love
Nancy
Treatment 3 in Place
Posted 3 hours ago
Ok, here I lie... on my Sleep Number bed at the Radisson, stiller than still. Man does this treatment take a lot out of me. I'm as meek as a tiny kitten, but that is the only bad news.
We got a clean bill of health from the neurosurgeon and guess what? There were no staples in my head; I could have been shampooing for a week. GRRRRRRRR. Oh well. The bottom line is that there is no need to see the neurosurgeon anymore.
We then headed to CTCA where after lunch (yes, I ate), I had my labs taken and vitals done. Then Deb, the nurse practitioner who does my infusion came to me to say that the first of the cytology reports were in and that comparing the first and the second samples show that the chemo IS WORKING!!! It's gone from 'cancer present' to 'rare cancer present'. In other words, we're making progress in getting rid of the cancer in my cerebral spinal fluid (CSF). There was less protein that showed up and things appear to be clearing. THANK G-D!!!!! Praise Him!!
Next onto Reiki, where Carol helped me prepare to open for cleansing, healing of the Methotrexate.
Then we had a little snafu. Somehow, Deb wasn't able to access the Ommaya Reservoir. However she tried, she couldn't get clear CSF to come out. So, we 'closed me up' and sent me for my acupuncture until she could contact the neurosurgeon at Temple for advice and assistance. In the meantime, Jeananne, infusion nurse extrordinaire became available and she joined Deb in our next attempt. Very interesting that several months ago, Jeananne was telling me how she was studying for a certification that brought her up to a higher level of being able to not only access ports, but do other infusion jobs. How perfect that her studying was making her ready to actually be able to do my Ommaya access. And she is GOOD. She went in at a different angle and as easily as anything, out came 6 cc of clear CSF. Then in went 3cc of methotrexate and 3cc of saline. And now, is the headache and the incredible weakness. I could barely walk into the hotel and sort of floated to my room and plopped on the bed.
Steve and my inlaws helped me get settled and then Steve left for home and my inlaws are just down the hall if I need them. I ordered room service and was very hungry. The room service guy came into the room and even opened my ketchup bottle and practically cut the food for me. I felt very taken care of.
And so, tonite, I rest and recover. Tomorrow, I'll go home and rest some more as a prepare for a week off from treatment. They are giving me off for Thanksgiving. Cousin Ellen, that means that Steve and I are planning on coming to you. I'll be slow, but I plan to be there!! YAY!!
Today was the first chemo for my FORCE sister and I was thinking of her while I was going through my treatment today, sending her healing waves of fresh cleansing chemo, swishing away any cancer and replacing it with healing normal cells. I hope that all went well today.
I'm pooped and will turn in for the night in a bit. I could feel all of your support and energy today. It really helped me stay open to healing and G-d's love. Thank you so much.
Love, Caryn
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------------- Nancy
DD Lori dx TNBC June 13,2007
Lumpectomy due to incorrect dx of a cyst
mastectomy July 6 2007
chemo ACT all 3 every 3 weeks 6 tx Aug-Nov
28 rads ended Jan 2008
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Posted By: Nancy
Date Posted: Nov 20 2008 at 4:31pm
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an update from Caryn
OT's are wonderful people Caryn, and there are so many ways to chop that garlic and those onions without chopping your fingers. Have fun cooking...if that is what you want to do.
Love, Nancy
Chemo Cooking.....
Posted 1 hour ago
Boy am I glad that I stayed at the hotel last night. It was very good to be cared for and also good just to crash. I got a good night's sleep, a good hearty breakfast (yummy pancakes), and then my wonderful inlaws drove me home where I plopped down on the sofa to rest and 'cook.'
I'm still very weak and tired, but hopeful that with the one week reprieve from treatment, I'll have more energy.
Tomorrow, my MIL and FIL will leave around mid-day and the occupational therapist is due around 1pm. I know that OT sometimes uses the kitchen for therapy. It would be great if we could practice on some cooking. I just have this yen to slice up some onions and garlic(without slicing my fingers) and making up a nice dinner. Too soon? Who knows? We'll find out tomorrow.
Love, Caryn
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------------- Nancy
DD Lori dx TNBC June 13,2007
Lumpectomy due to incorrect dx of a cyst
mastectomy July 6 2007
chemo ACT all 3 every 3 weeks 6 tx Aug-Nov
28 rads ended Jan 2008
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Posted By: CarynRose
Date Posted: Nov 20 2008 at 4:54pm
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Oh.... did I mention?
I HATE BEING SICK!!!!
------------- Orig dx 6/03 - St.2a, IDC
gr.3,0 nodes, TNBC/BRCA1+
7/07 St 4 mets to nodes/lungs. PACA/Rads NED 11/07-10/08
Lepto mets 10/08
Rads for 4 brain tumors 4/10.
Leptomets return 6/10
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Posted By: Nancy
Date Posted: Nov 20 2008 at 5:01pm
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Caryn,
I don't think you have to tell us that sweetie. You are a doer, a mover and a shaker, and the restrictions put on you at this time are not what you would ever want. The prayers are always there Caryn....always.
Love,
Nancy
------------- Nancy
DD Lori dx TNBC June 13,2007
Lumpectomy due to incorrect dx of a cyst
mastectomy July 6 2007
chemo ACT all 3 every 3 weeks 6 tx Aug-Nov
28 rads ended Jan 2008
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Posted By: CarynRose
Date Posted: Nov 20 2008 at 5:58pm
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Yeah, but I'm feeling particularly disabled tonight and it makes me sad and so frustrated.
Love,
Caryn
------------- Orig dx 6/03 - St.2a, IDC
gr.3,0 nodes, TNBC/BRCA1+
7/07 St 4 mets to nodes/lungs. PACA/Rads NED 11/07-10/08
Lepto mets 10/08
Rads for 4 brain tumors 4/10.
Leptomets return 6/10
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Posted By: Nancy
Date Posted: Nov 20 2008 at 6:14pm
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Dear Caryn,
I cannot begin to imagine what you are feeling. I cannot find the right words to comfort you. 
From all your postings to everyone here on the site and from what I have read on the FORCE site, you are a person who is always doing for others. Always putting others before yourself. Now you need that from everyone you have helped. Lori has always said that if a person is not physically strong then you are at the mercy of others for everything.
I do not know you personally, but the physical aspect right now in your life, is what is probably the most frustrating. You will regain your strength sweetie...it will take time...but you are a strong woman. You will never...never....never....never....never give up.
Much love and many many hugs,
Nancy
------------- Nancy
DD Lori dx TNBC June 13,2007
Lumpectomy due to incorrect dx of a cyst
mastectomy July 6 2007
chemo ACT all 3 every 3 weeks 6 tx Aug-Nov
28 rads ended Jan 2008
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Posted By: Sadie Rose
Date Posted: Nov 20 2008 at 6:25pm
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Caryn,
I can not fully know what you are going through, but I so identify with the frustration of not feeling well. Last year I was hospitalized suddenly with a blood clot in my lungs. It was such a shock to be wheeled from a PET scan straight into a hospital bed. I hated being confined to the bed. I talked them into letting me go home a day early. It was so good to get back home and to have my comfort things around me.
I hope your first day home went well and that you have a peaceful sleep tonight. You are always in my thoughts.
Warmly,
Sadie
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Posted By: Nancy
Date Posted: Nov 21 2008 at 6:18pm
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an update from Caryn
Nancy
Occupational Therapy
Posted 3 hours ago
I had my first meeting with the Occupational Therapist today. She didn't say anything that surprised me. My main issue is endurance along with a vision issue that prevents me from interacting with the world without feeling like I'm behind a prism of some sort.
We went through the kitchen and she gave me some tips to stay safe while manuevering around the room. First rule -- everything off of the countertops so I can hold on and get from one part of the room to the other. That will be a relief as the clutter in that room has been driving me crazy since I got home from the hospital, but I just didn't have the strength to do anything about it.
Next Wednesday, she's coming back and will help me make a veggie dish that we can bring to Ellen's house on Thanksgiving. Cool!
She also is recommending a doctor who is able to help with sort of prism type glasses to help me see straight. She said that my left eye is a little off. If I'd been an older woman who'd had a stroke, she wouldn't even think of making the correction, but with someone my age who is committed to an active life, she definitely believes this type of help is necessary.
She'll be back a few more times and we'll work from there.
She also definitely believes that I will benefit from the E-stim, which will help my face. It's an outpatient therapy and she believes that the local Robert Wood Johnson physical therapy facility at Quakerbridge will provide transportation there for me. This is a good thing as Martha would say.
Been noticing some grief bubbling up on occasion. That's a good thing too because it may be that my seige mentality may be pulling back and I can relax into healing and getting the emotion out. Frankly, I can use a good cry -- though it is really, really painful for my face.
I got a call from one of the women who came to sit with me last week. She wanted to check on me and see if I wanted her to come by again next week. Thankfully, I think I'm good on my own, but it was really nice to hear from her. I told her that we will get together more socially soon, now that I can be more vertical. We have a lot in common as our parents were Holocaust survivors and we both have that kind of strength that comes from that in our backgrounds.
Tomorrow, Steve actually took off from work and so we're spending the whole day together. I'm soooooo psyched! There is a lot to do around the house, but it will really be nice to share the day with my hubby. Just as long as he doesn't call me delirious....LOL.
Love, Caryn
PS--- I forgot to add that over the last few days, I've been getting so many cards and letters from so many of you. They mean sooooooooo much to me as each word you've written inspire me to keep going. You are sharing your lives with me and it helps me motivate to get back into my life. I love hearing about Kathie's sailing the winter --- LOVE the dolphins!! And how Kathie H. is traveling the midwest. And today, I even received a thank you card from Stephanie's family. In the card there was a photo of our dear FORCE sister whom we lost so recently. She's my guardian angel; I can feel it and seeing her photo hit me hard. I love the cards. Thank you.
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------------- Nancy
DD Lori dx TNBC June 13,2007
Lumpectomy due to incorrect dx of a cyst
mastectomy July 6 2007
chemo ACT all 3 every 3 weeks 6 tx Aug-Nov
28 rads ended Jan 2008
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Posted By: Nancy
Date Posted: Nov 23 2008 at 1:25pm
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an u0pdate from Caryn
So good to hear that you had such a wonderful day.
Love,
Nancy
A Very Nice Sunday
Posted 1 hour ago
After some nasty insomnia last night, I finally fell asleep in our living room around 3am. Probably has something to do with the steroid they have me taking for the inflammation. Woke feeling ok and was happy to shower and shampoo.
Then my cousin Len and his wife Susan came to visit from NYC. What a lovely visit we had. Just chatted about travel and life in general. Very little about the cancer, which is such a nice relief. It is very nice to have family around.
Got a call from Agnes that she and Mom have been invited over to a neighbor's home for Thanksgiving. This is a woman whom we invited to Mom's house for Rosh Hashanah and she is now returning the favor. I'm so grateful that Mom has a place to go for the holiday. This woman has a piano and her caregiver plays and sings. Mom and Agnes will have a wonderful time.
Steve headed over to the Hamilton Marketplace and did some shopping, including at Linens and Things, which is going OOB. We replaced our toaster oven with a convection oven and stocked up on other necessities. He's pooped now, poor guy. Just settling in to watch some football. I'm going to try to help out tonight with dinner.
Love, Caryn
------------- Nancy
DD Lori dx TNBC June 13,2007
Lumpectomy due to incorrect dx of a cyst
mastectomy July 6 2007
chemo ACT all 3 every 3 weeks 6 tx Aug-Nov
28 rads ended Jan 2008
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Posted By: Cheryl51
Date Posted: Nov 23 2008 at 3:29pm
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Dear Caryn,
I am so happy for you to be home and beginning to be "normal" again. Whatever normal is certainly eludes me
I felt for you when you wrote about grief beginning to show itself. I can really relate to the "soldier energy" of getting through such a frightening crisis. It's all you can do just to get through it, hoping you will and not allowing much else to enter your mind, or your soul. I do hope you can now rest and that with that rest will come the emotion that is there.
You are an amazing woman. I stand in awe.
Cheryl51
------------- Diagnosed 3/07, Stage IIB, Grade 3, 2/10 nodes positive
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Posted By: NancyJane
Date Posted: Nov 23 2008 at 3:40pm
Caryn:
Your posts are such a treat. I love hearing about your day and each new thing you are adding back to your routine. I too love to cook and can so relate to your desire to get back into the kitchen. I bet you are itching to try out the new oven! Sending you lots of love from sunny Key Largo ... 
------------- 41yr dx 7/25/08
Lumpectomy and ax node disection (38 nodes, all clean!) 8/12/08
T2 grd 3, N0, TN IDC
BRCA1+
ACx4,Tx12 10/08-3/09
prophylactic hyst, ooph,mast & one-step recon 3/30/09
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Posted By: anna921
Date Posted: Nov 23 2008 at 4:58pm
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Nancy,
since I'm pretty new to this board, would you mind explaining to me and other new comers who Caryn is? I've read your/her posts, but didn't want to intrude. From what I've gathered, Caryn has had quite a bad time with it all but has kept and keeping her spirits up.
------------- August 2007, Stage III, 5+ cm, Grade 4F, 4 FAC with booster after 4 days, 12 weekly Taxol, radical mastectomy, 36 radiation treatments.
Houston, Texas
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