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Old 08-29-2007, 04:46 AM   #41
IRENE FROM TAMPA
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Smile So glad to hear

That you and your hubby had a better day yesterday.

Sheila - I know exactly what you speak of and what you are feeling.

My sig. other and I just came through very similar situation. He became very distant with me, became depressed and we are currently going to a therapist to try to help us. The therapist mentioned that I am handling things better and I am the one with the cancer. As men do, they keep their feelings inside, unlike us women who can handle situations differently - Venus & Mars you know....

He has dealt with my illness for so many years and has been there for me but this life with cancer is like a yo-yo and I guess it started taking a toll on him. He feels he can not "save" me and is torn up with this thought.
I told him he did not "need" to save me, just be there for me. I guess with so much emphasis on my illness, I am sure that he felt tossed aside. He has never said this but I need to start considering him more. We are doing much better and I am incouraging him to "talk" to me more about his feelings. I was also going to check on finding him a support group for caregivers, which might help him to speak to others in the same situation.

Sheila - sorry for going on so long but I just wanted to share my story with you in hopes that you will feel a little bit better in knowing that you are not alone and that this WILL get better for you and your hubby. Just in what you both did yesterday, laughing, crying and talking TOGETHER is the road back for you both. To reconnect..... I am reading a book at the moment which talks about how different men are then women and how they perceive things in their lives. Boy, we have our work cut out for us.. lol

Email me any time you wish to just chat. I am very good at listening my friend.

Take care and hope thinks continue to get better for you both. AND IT WILL.
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Irene from Tampa
1996 - INFILT DUCTAL CAR.W/ LYMPH NODE INVOLVEMENT. ADRIA/CYTOXIN/5FU
1999 - RECURR. TO AUXILA AND 2 TUMORS IN LIVER
TREAT: STEM CELL REPLACEMENT/HERCEPTIN.
2002 - RECUR TO LIVER
TREAT: NAVELBINE, THEN GEMZAR, THEN XELODA.
2004 - TUMORS STILL IN LIVER
TREAT: RFA TO LIVER
STABLE UNTIL
2004 - TUMOR PROGRESSION IN LIVER.
TREAT: RESECT HALF OF LIVER.
2005 - RECURR TO LYMPH NODE OUTSIDE OF LIVER.
TREAT: TAXOL/CARPO/HERCEPTIN. FAILED ON
THIS TRIO. STARTED ON ABRAXANE.
2006 - PROGRESS WITH 2ND TUMOR GROWTH.
TREAT: AUG. BEGAN ON TYKERB/XELODA
TRIAL. CONSIDERED STABLE TO DATE.
2007 - TAKEN OFF OF TYKERB/XELODA TRIAL DUE TO
PROGRESS STARTING TYKERB/AVASTIN.
NOV 2007 - SCANS SHOW PROGRESS TUMOR GROWTH
IN ABDOM. AND TWO NEW TUMORS IN NECK AREA.
BEGAN HERCEPTIN/AVASTIN/TAXOTERE
Feb 08 - Ixempra/Xeloda
June 08 - Her/DM1 trial

"I WANT TO BE AN OUTRAGEOUS OLD WOMAN WHO NEVER GETS CALLED AN OLD LADY. I WANT TO GET SHARP EDGED & EARTH COLORED, TILL I FADE AWAY FROM PURE JOY."
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Old 08-29-2007, 05:24 AM   #42
madubois63
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Sheila - You've gotten some AMAZING advise, but let me add that you can call CancerCare too. They have volunteers that will drive you. One person can drive you, and one person can pick you up. Please don't feel like a burden to everyone. When you get better, you can volunteer and help someone else. When I first got sick and had to leave my job, money was nearly non-existent. Christmas was so sad for me, but a local church came through and brought us presents and food. Another organization bought coats for my kids and more presents. I cried and cried because I felt like I was taking advantage. Then I remembered that I have given to so many organizations over the years, and this was my pay back. I had danced for 24 hours, walked miles and miles for this or that and even stayed awake for nearly a week (I did hallucinate) to raise money for battered women. Right now, I just do little things as pay back. If someone needs a dollar, I give. If a woman walking with four kids needs a ride, I drive her. If a newbie writes me in the middle of the night, I call her. You need to do this one thing to help your husband and yourself. When you were driving yourself, it was easier for your husband to forget (or put aside) the thoughts of loosing you. Watching it must be horrible. And this past weekend was very important. You have to make the effort to put cancer on the back burner for a few hours and be people. I am so glad you had that time! Make more of it. Please remember cancer HATES the sound of laughter.
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Stage IV Inflammatory BC 1/00
Mod Rad Mastectomy 24nod/5+
Adriomycin Cytoxin Taxol
Tamoxifen 4 1/2 yrs
Radiation - 32 x
Metastatic BC lung/liver 10/04
thorocentesis 2x - pleurodesis
Herceptin Taxatiere Carbo
Femera/Lupron
BC NED 4/05
chemo induced Acute Myeloid Leukemia 5/06
Induction/consolidation chemo
bone marrow transplant - 11/3/06
Severe Host vs Graft Disease of liver
BC mets to lung 11/07
Fasoladex Herceptin Zometa Xeloda
GVHD/Iron overload to liver
Avascular Necrosis/morphine pump 10/10
metastatic brain tumor
steriotactic radiosurgery
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Old 08-29-2007, 06:47 AM   #43
Mary Anne in TX
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What a powerful thread! Thanks Sheila, for your honesty & willingness to begin it! And it's great news to see that you two have turned this thing around! Warrior power!

I sure do think cancer is about losing things....like breasts, security, hair, energy, some friends, etc.
But, I've lost some really great things too.....like:
the need to try to please everyone
the desire to be like everyone else
the fear of my family not being there for me (this was huge!)
the desire to have things others have
trying to do it all...thinking everything is My Job!
believing house work comes first
and thinking cancer is the worst thing...I've decided I'm really a very lucky girl (I think that's easier for me to say cause I'm 62 OR maybe cause cancer has made me finally grow up for real!)
I think for me the bestest thing about cancer has been learning to celebrate every single day and all the small wonderful things God put in this ol' world...most of all people like all of you!
I'm working to lose some more stuff this week...I still slip into the control stuff/having to know what's coming. Gotta get that one licked. It sure can rob me of the Good Stuff!
Not having any alcohol to finish (family FULL of alcoholics) yesterday I found a way to make having chocolate brownie for dessert a way to "finish" my lunch!
Love to all, mary anne
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MA in TX.
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 08-31-2007, 12:34 AM   #44
TriciaK
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I read all of this thread for the first time tonight, and it has been so very touching. Sheila, I have found all your posts to be outstanding---your wonderful personality really comes through. Truly you are an Amazon warrior! You have gotten such wonderful, empathetic responses from everyone. I hope you know how loved and appreciated you are by all of us on this website. I have just one thing to add: One of the biggest differences between men and women is that men have an innate need to "fix it". They especially feel that they should be able to solve all the needs and problems of the one they love most and feel most responsible for, their wives or their significant other. When these problems are as difficult and demanding as fighting cancer is, a man feels totally helpless and frustrated, as if he is failing as a man. A frustrated, helpless man is often an angry man. One of the best ways to deal with this is to empathize with him by using feeling words, such as "Are you feeling frustrated and helpless because you can't fix this or solve this problem for me?" And let him know you don't expect or need him to fix it or solve it---just to listen and be there and empathise. My husband is a psychologist, and he has expressed this feeling of helplessness about not being able to "fix" my health problems. Even though we both understand his frustration, it is still there and he needs reassurance from me that it's okay, that I appreciate his wanting to solve my problems, but I don't need fixing as much as I need his love and support. I don't know if this is helpful to you, but it does sound as if you two have finally been able to share some feelings. True communication is on a feeling level, heart to heart and spiriit to spirit. This kind of communication comes more naturally to a woman, because men are often more left brained and logical. But they can learn to share on a feeling level, and a wise woman can gently teach him how to do this by being patient, loving and appreciative. Not always easy when you are fighting cancer! Thank you for sharing so much of yourself on this website--I know everyone who has read this post and others you've shared has felt of your strong spirit and is praying for you! Hugs, Tricia
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Old 08-31-2007, 12:16 PM   #45
hutchibk
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Tricia - I just love your posts... please drop your wisdom on us more often. I am always so interested when I see that you have responded!

Of course, I am interested to read everyone's posts, but Tricia doesn't grace us as often with her wisdom... and I love to read her perspective.
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Brenda

NOV 2012 - 9 yr anniversary
JULY 2012 - 7 yr anniversary stage IV (of 50...)

Nov'03~ dX stage 2B
Dec'03~
Rt side mastectomy, Her2+, ER/PR+, 10 nodes out, one node positive
Jan'04~
Taxotere/Adria/Cytoxan x 6, NED, no Rads, Tamox. 1 year, Arimadex 3 mo., NED 14 mo.
Sept'05~
micro mets lungs/chest nodes/underarm node, Switched to Aromasin, T/C/H x 7, NED 6 months - Herceptin only
Aug'06~
micro mets chest nodes, & bone spot @ C3 neck, Added Taxol to Herceptin
Feb'07~ Genetic testing, BRCA 1&2 neg

Apr'07~
MRI - two 9mm brain mets & 5 punctates, new left chest met, & small increase of bone spot C3 neck, Stopped Aromasin
May'07~
Started Tykerb/Xeloda, no WBR for now
June'07~
MRI - stable brain mets, no new mets, 9mm spots less enhanced, CA15.3 down 45.5 to 9.3 in 10 wks, Ty/Xel working magic!
Aug'07~
MRI - brain mets shrunk half, NO NEW BRAIN METS!!, TMs stable @ 9.2
Oct'07~
PET/CT & MRI show NED
Apr'08~
scans still show NED in the head, small bone spot on right iliac crest (rear pelvic bone)
Sept'08~
MRI shows activity in brain mets, completed 5 fractions/5 consecutive days of IMRT to zap the pesky buggers
Oct'08~
dropped Xeloda, switched to tri-weekly Herceptin in combo with Tykerb, extend to tri-monthly Zometa infusion
Dec'08~
Brain MRI- 4 spots reduced to punctate size, large spot shrunk by 3mm, CT of torso clear/pelvis spot stable
June'09~
new 3-4mm left cerrebellar spot zapped with IMRT targeted rads
Sept'09~
new 6mm & 1 cm spots in pituitary/optic chiasm area. Rx= 25 days of 3D conformal fractionated targeted IMRT to the tumors.
Oct'09~
25 days of low dose 3D conformal fractionated targeted IMRT to the bone mets spot on rt. iliac crest that have been watching for 2 years. Added daily Aromasin back into treatment regimen.
Apr'10~ Brain MRI clear! But, see new small spot on adrenal gland. Change from Aromasin back to Tamoxifen.
June'10~ Tumor markers (CA15.3) dropped from 37 to 23 after one month on Tamoxifen. Continue to monitor adrenal gland spot. Remain on Tykerb/Herceptin/Tamoxifen.
Nov'10~ Radiate positive mediastinal node that was pressing on recurrent laryngeal nerve, causing paralyzed larynx and a funny voice.
Jan'11~ MRI shows possible activity or perhaps just scar tissue/necrotic increase on 3 previously treated brain spots and a pituitary spot. 5 days of IMRT on 4 spots.
Feb'11~ Enrolled in T-DM1 EAP in Denver, first treatment March 25, 2011.
Mar'11~ Finally started T-DM1 EAP in Denver at Rocky Mountain Cancer Center/Rose on Mar. 25... hallelujah.

"I would rather be anecdotally alive than statistically dead."
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