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Old 03-07-2011, 08:16 AM   #1
Merry
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I'm Taking Care of My Mom

Five years ago my Mom beat Breast Cancer only to develop lung cancer in October. It's Stage 4 and she was taking chemo only to hold it at bay and give her more time, or so said the docs. She contracted MRSA from the damn port they put in her and it had to be removed. Four weeks of every day anti-biotic transfusions killed the bacteria but she was unable to receive chemo. After this last round of chemo, she's been nothing but nauseated and we have tried most all of the anti-nausea drugs including synthetic marijuana which made her sicker.
I have been staying at her house since Dec 20 and it feels like I'm just waiting around for her to die. She skipped her next chemo treatment because she's been too sick to get off the couch and when the Visting Nurse came by, we spoke of hospice care because she is thinking she cannot take being sick like this in her remaining time. She's a fighter and this is killing me because it feels like she's giving up. I don't want her to do anything extraordinary that will cause her misery but I don't wanna lose my Mom. We've been extremely close all our lives and I know in my mind that everyone dies, but oh man, NOT LIKE THIS!
I have to call the clinic today to cancel her chemo and I don't know what to ask or say to them. Will the Oncologist still consider my Mom her patient or do they just 'write her off' and let the hospice take over? I would very much like to have someone order a PET scan, or MRI or SOME kind of test to see if the cancer spread, but the last time I asked, I was told that it was "too soon" because she only had 2 chemo treatments.

I am on my own pretty much in taking care of my Mom. I don't know if I am doing anything right other than being a good cook, and housekeeper, lol. She's so weak and tired all the time that it breaks my heart to see what was once a vibrant, fiesty woman who was always in her garden or flower beds reduced to this pale, wan and wobbly woman.
I don't get much time to myself and is that selfish of me to think that? I walk her dog for about an hr every day when I know she can be left alone. I'm not far away in case something happens but if it did, I'd never forgive myself. It feels so wonderful to be outside for a little while but then I have to come back to this House of Pain. I'm trying very hard to make her laugh and keep the vibes light but we both know how this ends.
I'm not sure if I'm asking anything, but thanks for just letting me write this down because I have no outlet to let off the pressure I feel inside. I left my husband behind to come back here to look after my Mom and I miss my new life in a new state. When I feel overwhelmed I guiltily wish I was back there with him and our dog. My younger brother is totally useless as far as help and I have to take care of his lunch, dinner, laundry, messes in the house, because Mom has made him dependent on her care over the years and if I don't do it, she will try to.
How do I learn to accept that she can't fight this disease with chemo treatments and watch her slip away without a fight? It seems so wrong but yet I can't bear to see her so sick from the treatments that are not going to cure her. It's truly a "rock and a hard place" where I am today....
God bless you for letting me 'vent' a bit....peace and love, mgl
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Old 03-07-2011, 08:48 AM   #2
Mary L
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Re: I'm Taking Care of My Mom

Merry, you are a wonderful daughter and you are doing a great job and making your Mom's final days happy for her. She sounds like a very strong woman and you are also. Have you talked to her oncologist about Hospice? He would know when it is time. It might be helpful if they could come and give you a break every day. I took care of my sister at the end of her life and Hospice came everyday at the end and they would tell me to do something for myself for an hour. It is a very difficult thing to do but when you look back on the quality time you spent with your Mom, you be so glad that you were there for her. I will pray for your Mom and also you. Best Wishes!!! Mary L
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Mary L from PA Diag: Oct 2003 w/6mm mass, IDC grade III ductal carcinoma in-situ, IBC stage IIIB. tx A/C followed by Taxotere(only able to have 2 tx, allergic), mastectomy, 3 0ut of 7 positive nodes. 35 rads. Recurrence 9 months later, skin mets to mastectomy site. Tx Carboplatin/Herceptin. Stayed on Herceptin almost 5 years, had 3 more recurrences when I had to stop Herceptin due to my ejection fraction getting too low. Herceptin stopped and ned 3 years in Oct. 2010.
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Old 03-07-2011, 10:33 AM   #3
NanaJoni
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Re: I'm Taking Care of My Mom

Merry - God bless you for all you are doing for your mother. It sounds like you've done everything possible to make things as good for her as you can but it also sounds like you need some help at this point. I agree with Mary L - it's time for hospice care. The care they will give your mom not only is the medical care but, more important, the emotional care for her and for you. Your oncologist should be able to help you set that up. You are not being selfish for wanting things to be they way they were before your mom became so sick. And, believe, me vent away here because you will get enormous amounts of support from people who truly understand what you are going through. So, don't wait - contact someone today to get the hospice care started and ask if there is someone you can turn to for counseling and support as you travel this difficult road. Your mother must be a wonderful woman to have raised a caring daughter like you.
__________________
Joni -64 yrs old -
3/01/10: found lump in rt.breast
3/12/10: mammogram/ultrasnd/biopsy-invasive bc & DCIS; 2 tumors (2cm er-/pr-/HER2-& 1.8 cm er-/pr-/HER2+); grade 3;poorly differentiated
3/24/10:sent.node biopsy clear
3/31/10:bi-lateral mx.;atypical ductal hyperplasia-lft side
4/21/10:wound revision-infection/scarring 4/28/10:seromas both sides
5/21/10:port installed,TCH chemo (6 x 3 wks); Herc,-1yr; 33 rad tx after chemo
07/2010: port not working-2nd port didnt'work;3rd port opposite side.
07/2010: 2 weeks after 3rd port surgery, threw 3 pulm. emboli-IVC filter installed; warfarin
08/2010: hospitalizations w/3 of chemos; decision to stop after 4th-on to radiation in Oct 2010;Herc cont.
12/03/2010 - finished 33 rads Hooray!! cont. Herc. every 3 wks
4/2011 - pneumonia ??? Nope-radiation pneumonitis. No more Herc.
5/2011 - NED!!! port out.
8/2011 - clean PET & CT scans.Still NED
7/2012 - Still NED/very blessed.
2/2013 - 6 mos checkup-all clear. CA2729 down frm 13 to 11.
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Old 03-07-2011, 04:38 PM   #4
Elizabethtx
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Re: I'm Taking Care of My Mom

I wish I knew exactly what to say to make you feel better. You are doing everything you can to help your mother. At this point it sounds like she needs to decide where she is headed. It is all about choices. I am sorry she feels too sick to fight. Get some help through hospice care. I will pray for you both!
__________________
Diagnosed: Feb 2010 @ 46 yrs old
Invasive Ductual Carcinoma, left
2/28/10 Bilateral Mastectomy (tissue saving for future reconstruction)
3.2 cm 2/18 +lymph nodes
Stage 2b; E+/P+/Her2 +++
Nottingham score grade 2
Ki67 30%
3/2010 A/C 4 DD/2wks
5/2010 Herceptin/Taxotere 4D/3wks
8/2010 Herceptin until May 2011
Tamoxifin 20mg
9/2010 RAD 34 treatments
Pet scan Aug 2010 clear
Port removed July 2011
Bone scan, chest MRI 12/11 clear
Vaccine trial began Oct 2011








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Old 03-08-2011, 11:59 AM   #5
Jackie07
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Re: I'm Taking Care of My Mom

Sorry for the situation. You sound like a very level-headed person who just needs an outlet to share your feelings. Let us know how things are going. And know that we are praying for both your Mom and your family.
__________________
Jackie07
http://www.kevinmd.com/blog/2011/06/doctors-letter-patient-newly-diagnosed-cancer.html
http://www.asco.org/ASCOv2/MultiMedi...=114&trackID=2

NICU 4.4 LB
Erythema Nodosum 85
Life-long Central Neurocytoma 4x5x6.5 cm 23 hrs 62090 semi-coma 10 d PT OT ST 30 d
3 Infertility tmts 99 > 3 u. fibroids > Pills
CN 3 GKRS 52301
IDC 1.2 cm Her2 +++ ER 5% R. Lmptmy SLNB+1 71703 6 FEC 33 R Tamoxifen
Recc IIB 2.5 cm Bi-L Mast 61407 2/9 nds PET
6 TCH Cellulitis - Lymphedema - compression sleeve & glove
H w x 4 MUGA 51 D, J 49 M
Diastasis recti
Tamoxifen B. scan
Irrtbl bowel 1'09
Colonoscopy 313
BRCA1 V1247I
hptc hemangioma
Vertigo
GI - > yogurt
hysterectomy/oophorectomy 011410
Exemestane 25 mg tab 102912 ~ 101016 stopped due to r. hip/l.thigh pain after long walk
DEXA 1/13
1-2016 lesions in liver largest 9mm & 1.3 cm onco. says not cancer.
3-11 Appendectomy - visually O.K., a lot of puss. Final path result - not cancer.
Start Vitamin D3 and Calcium supplement (600mg x2)
10-10 Stopped Exemestane due to r. hip/l.thigh pain OKed by Onco 11-08-2016
7-23-2018 9 mm groundglass nodule within the right lower lobe with indolent behavior. Due to possible adenocarcinoma, Recommend annual surveilence.
7-10-2019 CT to check lung nodule.
1-10-2020 8mm stable nodule on R Lung, two 6mm new ones on L Lung, a possible lymph node involvement in inter fissule.
"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." Irene from Tampa

Advocacy is a passion .. not a pastime - Joe
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Old 03-09-2011, 01:22 AM   #6
Trish
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Re: I'm Taking Care of My Mom

Thanks for sharing your story with us. Your mother is very lucky to have you as her daughter. It is important (and not at all selfish) to take time to care for yourself. Your well being is important for both of you.
Trish
__________________
5/2004 (R) 30mm bre gr3 infiltrating ductal ca 16/18nodes er (2+) pr (3+) HER2 (3+)
6/2004
6 cycles(FEC), Oct 40 rads, Tamoxifen
5/2006
oopherectomy, Arimedex
12/2006
liver mets largest 9cm
1/2007
Herceptin,
3/2007
Taxol + Herc
1/2008
Herc alone
4/2008
Multiple bone mets,Zometa
7/2008
Herc + Gemcitabine
8/2008
Herc+Navelbine/vinoralbine
10/2008
Herc+Carboplatin+Taxol
12/2008
Tykerb+Xeloda
2/2010
Herceptin + trial drug
5/2010
Herceptin+Tykerb
8/2010
Tykerb+Abraxane
9/2010
Abraxane
12/2010
Abraxane+Tyk+Herc
4/2011
Tyk+Herc+Femara
6/2011
Liver and bone mets prog.Abraxane continue Herceptin,Tykerb,Femara and Zometa
8/2011
Probable liver progression and increased neuropathy. Xeloda with Tyk+Herc. Zometa 6 weekly.
9/2011
Liver progression,TM +++. Cyclophosphamide and Methotrexate metro Herc Zometa
10/2011 liver mets prog.Herc, 3 Tykerb +2mg decodron daily,Zometa
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Old 03-10-2011, 11:55 AM   #7
Colleens_Husband
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Re: I'm Taking Care of My Mom

Merry:

I took care of my wife, Colleen and I know what you are feeling about all of this. This can easily be the most frustrating and taxing thing you every will do in your life, and it also can be the most rewarding thing you can ever do at the same time.

I hear what you are saying when you mentioned that you do not know if you are doing things the right way. It really doesn't matter too much if you are a perfect caregiver. What matters is that you are a caregiver. Just being there and trying is enough. You aren't a medical professional, you are just a normal person doing the best you can and that makes you a saintly person in my book.

Finally, when I was getting overwhelmed taking care of someone with chemo, raising two children, and trying to keep a business running in bad economic times, someone said something that really opened my eyes. When the oxygen masks fall from the ceiling of the airplane, the parents are supposed to put their oxygen masks on first so that they can effectively care for their children. This is a very sensible thing for the health and safety of both the parent and child. Likewise, you need to take care of yourself in much the same manner as the oxygen mask. If you get emotionally and physically beat down, then you will not be able to care for your mom. If you need to, arrange hospice care for an afternoon (and if you are clever, you can get it for free) and go take a walk, go to a movie, spoil yourself, do whateveer you need to do to recharge yourself. If you do this, then you can do a much better job caring for your mom.

Being a male person, I am sometimes plagued by the delusion that I can be Superman. I can do anything, endlessly without respite, without thanks, and without help. This is, of course a useful form of madness, but it is madness all the same.

Merry, please take excellent care of yourself. The path you are following is not easy, but you will ultimately be very glad you followed it. Remember that you are not alone. We are here for you. You are in our hearts and prayers.

Lee
__________________
This happened to Colleen:

Diagnosed in September 2007
ER-/PR-/HER2 Neu+++ 2.1 cm x .9 cm spicluted tumor with three fingers, Stage 2B
Sentinal node biopsy and lymph node removal with 3/18 positive in October 2007
4 TAC infusions
lumpectomy March 2008, bad margins
Re-excision on June 3rd, 2008 with clean margins
Fitted for compression sleeve July 16, 2008
Started the first of two TCH infusions August 14, 2008
Done with chemo and now a member of the blue dot club 9/17/08
Starting radiation October 1, 2008
life is still on hold
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Old 03-10-2011, 02:11 PM   #8
Jackie07
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Re: I'm Taking Care of My Mom

Perhaps to seek a 2nd opinion?

Chemotherapy for lung cancer can be harsh. The Mother of two of our church members had refused chemo after just a couple of rounds 13 years ago. Her local oncologist had stated she'd not last more than 6 months without chemo. Her daughters took her to MD Anderson for consultation and they changed her medication. She lived three more years with good quality of life - attending church regularly, even gave a public testimony one time, until a couple of months before she passed in 2001.
__________________
Jackie07
http://www.kevinmd.com/blog/2011/06/doctors-letter-patient-newly-diagnosed-cancer.html
http://www.asco.org/ASCOv2/MultiMedi...=114&trackID=2

NICU 4.4 LB
Erythema Nodosum 85
Life-long Central Neurocytoma 4x5x6.5 cm 23 hrs 62090 semi-coma 10 d PT OT ST 30 d
3 Infertility tmts 99 > 3 u. fibroids > Pills
CN 3 GKRS 52301
IDC 1.2 cm Her2 +++ ER 5% R. Lmptmy SLNB+1 71703 6 FEC 33 R Tamoxifen
Recc IIB 2.5 cm Bi-L Mast 61407 2/9 nds PET
6 TCH Cellulitis - Lymphedema - compression sleeve & glove
H w x 4 MUGA 51 D, J 49 M
Diastasis recti
Tamoxifen B. scan
Irrtbl bowel 1'09
Colonoscopy 313
BRCA1 V1247I
hptc hemangioma
Vertigo
GI - > yogurt
hysterectomy/oophorectomy 011410
Exemestane 25 mg tab 102912 ~ 101016 stopped due to r. hip/l.thigh pain after long walk
DEXA 1/13
1-2016 lesions in liver largest 9mm & 1.3 cm onco. says not cancer.
3-11 Appendectomy - visually O.K., a lot of puss. Final path result - not cancer.
Start Vitamin D3 and Calcium supplement (600mg x2)
10-10 Stopped Exemestane due to r. hip/l.thigh pain OKed by Onco 11-08-2016
7-23-2018 9 mm groundglass nodule within the right lower lobe with indolent behavior. Due to possible adenocarcinoma, Recommend annual surveilence.
7-10-2019 CT to check lung nodule.
1-10-2020 8mm stable nodule on R Lung, two 6mm new ones on L Lung, a possible lymph node involvement in inter fissule.
"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." Irene from Tampa

Advocacy is a passion .. not a pastime - Joe

Last edited by Jackie07; 03-10-2011 at 02:24 PM..
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Old 03-12-2011, 05:29 AM   #9
Merry
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Re: I'm Taking Care of My Mom

Thank you very much for your kind words and thoughts. I try to do the best I can but sometimes I forget to be as nice as I can be and Mom and I will 'spar' like we have done all our lives but this time I can't just go home and leave her alone for a few days. Usually when that would happen, we'd not talk for a couple of days and then I'd call her to see if she wants to go shopping and we'd act like nothing happened. It's so different now but then I think the last thing I should do is treat her differently.
I'm walking a rope without a net and I'm happy I thought to see about cancer care message boards because I am alone in dealing with this pain, and it's a pain I never have felt before. Life is so good but it sure can suck sometimes.....
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Old 03-12-2011, 08:33 AM   #10
Mary L
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Re: I'm Taking Care of My Mom

Merry, Treat your Mom the way you always have. She knows you love her unconditionally. You are doing a wonderful thing for your Mom. I'm glad you found us. Mary L
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Mary L from PA Diag: Oct 2003 w/6mm mass, IDC grade III ductal carcinoma in-situ, IBC stage IIIB. tx A/C followed by Taxotere(only able to have 2 tx, allergic), mastectomy, 3 0ut of 7 positive nodes. 35 rads. Recurrence 9 months later, skin mets to mastectomy site. Tx Carboplatin/Herceptin. Stayed on Herceptin almost 5 years, had 3 more recurrences when I had to stop Herceptin due to my ejection fraction getting too low. Herceptin stopped and ned 3 years in Oct. 2010.
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Old 03-12-2011, 02:07 PM   #11
Merry
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Re: I'm Taking Care of My Mom

Thank you so much Mary! You're a superwoman yourself to be able to take the time to respond to my posts when you are fighting your own battle. Many good vibes to you and it just goes to show how tough we women are!
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Old 03-15-2011, 08:19 AM   #12
schoolteacher
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Re: I'm Taking Care of My Mom

Merry, thinking of you today. I understand about you and your mom sparing. My mom and I do the same thing. Hope you have a great day. Hope your mom is doing well today.

Amelia
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Old 03-24-2011, 06:22 AM   #13
Merry
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Re: I'm Taking Care of My Mom

Thanks Schoolteacher!

We went to the doc to see if her lungs needed to be drained. It's just awful to see how good she looks and yet the cancer is all thru her body. The family doc answers our questions better than that oncologist. She can't have radiation or surgery because it wouldn't be worth the discomfort because the cancer is everywhere. She says that it's in the lung fluid, and because the fluid leaks out, cancer cells go all over the body. Doesn't that just suck? Takes away all shreds of hope. I don't know how people can get thru anything bad without hope. How does a fatally sick person get up every morning knowing life can end any time? I don't know how she does it, but I give her all the credit in the universe for doing it. I'm the one who seems to be despairing the most, lol but she doesn't know it. I tease and mess with her like I've always done.
I'm just so tired. I never seem to get enough sleep. I hate my old bed, I hate being "stuck" in one room, I miss my own home, my husband and my dog. I miss having 2 bathrooms! lol Listen to ME whine when she is the one going thru hell. I just thank God she's having a good stretch of days since she decided to not take chemo anymore. It made her so sick and nothing helped the nausea and we have just about every pill they can perscribe. Even pot pills which I think I'll take since she can't..lol Wink!
Thanks for "listening" to my type. I'm just so pissed off and stressed so thin and wishing for remission so I can at least THINK about flying back home for a little while.
God bless everyone here....peace, MgL
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Old 03-24-2011, 09:35 AM   #14
Mary L
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Re: I'm Taking Care of My Mom

Merry, sounds like you need a break. You are doing a wonderful thing for your Mom. Is hospice coming in to relieve you? If they aren't get it set up. I feel sad that your Mom is going through all of this. It is a very sad time for both of you but you are there for her and I know she is so glad that you are. You are in my prayers and I send my Besst Wishes. Mary L
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Mary L from PA Diag: Oct 2003 w/6mm mass, IDC grade III ductal carcinoma in-situ, IBC stage IIIB. tx A/C followed by Taxotere(only able to have 2 tx, allergic), mastectomy, 3 0ut of 7 positive nodes. 35 rads. Recurrence 9 months later, skin mets to mastectomy site. Tx Carboplatin/Herceptin. Stayed on Herceptin almost 5 years, had 3 more recurrences when I had to stop Herceptin due to my ejection fraction getting too low. Herceptin stopped and ned 3 years in Oct. 2010.
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Old 03-24-2011, 11:52 PM   #15
Trish
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Re: I'm Taking Care of My Mom

I'm convinced it is harder being the one taking care than the one with cancer. Please do try and get a break if you possibly can. My best wishes,
Trish
__________________
5/2004 (R) 30mm bre gr3 infiltrating ductal ca 16/18nodes er (2+) pr (3+) HER2 (3+)
6/2004
6 cycles(FEC), Oct 40 rads, Tamoxifen
5/2006
oopherectomy, Arimedex
12/2006
liver mets largest 9cm
1/2007
Herceptin,
3/2007
Taxol + Herc
1/2008
Herc alone
4/2008
Multiple bone mets,Zometa
7/2008
Herc + Gemcitabine
8/2008
Herc+Navelbine/vinoralbine
10/2008
Herc+Carboplatin+Taxol
12/2008
Tykerb+Xeloda
2/2010
Herceptin + trial drug
5/2010
Herceptin+Tykerb
8/2010
Tykerb+Abraxane
9/2010
Abraxane
12/2010
Abraxane+Tyk+Herc
4/2011
Tyk+Herc+Femara
6/2011
Liver and bone mets prog.Abraxane continue Herceptin,Tykerb,Femara and Zometa
8/2011
Probable liver progression and increased neuropathy. Xeloda with Tyk+Herc. Zometa 6 weekly.
9/2011
Liver progression,TM +++. Cyclophosphamide and Methotrexate metro Herc Zometa
10/2011 liver mets prog.Herc, 3 Tykerb +2mg decodron daily,Zometa

Last edited by Trish; 03-24-2011 at 11:53 PM.. Reason: typo
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Old 03-29-2011, 12:43 PM   #16
Merry
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Re: I'm Taking Care of My Mom

Hey everyone, I've been pretty sick for a week. Had the flu or something and was totally useless to myself and my Mom. I'm thankful that she was able to do for herself for a few days. I feel guilty as all hell but I had my head in a bucket and couldn't help it. Got some meds from our doc and it's clearing up the ear infections and upper res infection. Leave it to ME to get BOTH ears infected! I did get her to the doc and for some tests on her lung. She'll have to have it tapped next Mon, and Doc increased the Lasix back to 80mg a day. Sigh..she can go into Hospice but she refuses to do it. She was told that it doesn't mean she's dying right now, and that she can opt out anytime she wants. They'll stop by to check on her just like the Visiting Nurse does now. I can't say it to her, but it would help ME so much! Jeez..selfish bitch, aren't I??! I don't talke much to any of my old friends or visited anyone because I am always here with her or taking her whacked out dog for a walk. lol It was almost nice being sick because I slept for days and I never get much sleep anymore. I miss my husband but going back to the SW is out of the question and he can't come here either. Sorry everyone, I'm whining again and that's not what I mean to do. Thanks for putting up with me....peace...
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Old 03-29-2011, 05:30 PM   #17
NanaJoni
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Re: I'm Taking Care of My Mom

Merry - whine away. It's very therapeutic and all of us understand the pressure you are under. That kind of stress opens you up to so many physical and emotional ills. Just unload on here and try very hard not to feel guilty - it's the most wasteful of all emotions.
__________________
Joni -64 yrs old -
3/01/10: found lump in rt.breast
3/12/10: mammogram/ultrasnd/biopsy-invasive bc & DCIS; 2 tumors (2cm er-/pr-/HER2-& 1.8 cm er-/pr-/HER2+); grade 3;poorly differentiated
3/24/10:sent.node biopsy clear
3/31/10:bi-lateral mx.;atypical ductal hyperplasia-lft side
4/21/10:wound revision-infection/scarring 4/28/10:seromas both sides
5/21/10:port installed,TCH chemo (6 x 3 wks); Herc,-1yr; 33 rad tx after chemo
07/2010: port not working-2nd port didnt'work;3rd port opposite side.
07/2010: 2 weeks after 3rd port surgery, threw 3 pulm. emboli-IVC filter installed; warfarin
08/2010: hospitalizations w/3 of chemos; decision to stop after 4th-on to radiation in Oct 2010;Herc cont.
12/03/2010 - finished 33 rads Hooray!! cont. Herc. every 3 wks
4/2011 - pneumonia ??? Nope-radiation pneumonitis. No more Herc.
5/2011 - NED!!! port out.
8/2011 - clean PET & CT scans.Still NED
7/2012 - Still NED/very blessed.
2/2013 - 6 mos checkup-all clear. CA2729 down frm 13 to 11.
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Old 03-29-2011, 07:25 PM   #18
Merry
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Re: I'm Taking Care of My Mom

I'm sitting on my bed crying and thanking God I found this site and for you wonderful ladies who have gone thru so much yet have so much to give to a stranger.
God bless all the Pink Ladies everywhere....
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Old 03-30-2011, 12:01 AM   #19
Trish
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Join Date: May 2010
Location: Melbourne, Australia
Posts: 434
Re: I'm Taking Care of My Mom

It's pretty tough when you think getting sick is a break! Do your best to take care of yourself in whatever way you can. Does your mother know how much it would help you if she could get a little more professional support? Don't apologise for sharing these things with us. It's not whining, it's survival.
Yours Trish
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Old 03-31-2011, 08:49 PM   #20
Merry
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Join Date: Feb 2011
Posts: 32
Re: I'm Taking Care of My Mom

Thank you very much Trish. I am not sure if Mom understands that it would help me if she had Hospice here at the house now. They've told her that she can start it now and then if she feels ok, she can stop it anytime. Today she said that she didn't want it. After the Visiting Nurse left, she told me that she wouldn't have a doctor anymore if Hospice stepped in because they would be the ones to distribute any meds she would need. I don't recall the Hospice Nurse I spoke to saying it that way, and I said I was pretty sure she would be still be under her doctor's care. They're suppose to call and talk to her to explain things that she'll hopefully understand.

She has an appt to have her lung tapped on Monday, which was HER choice of day to go in, instead of going in sooner, like on Friday. Well, tonight she told me that her oxygen level was down to 78% just from walking outside and back in. It was ok yesterday. And it's fine if she's sitting or laying down. The last time this happened it was because she puts treatment off til the last second and then I scramble around like a crazy person trying to take care of her, change appointments and generally freaking out because I can't help her other than get her on her oxy machine and make her comfortable.

So tonight I will be too worried to sleep much. I don't know if the hospital will take her on Friday if her levels are worse because her appt is on Monday and they said she can't have any freaking aspirin 5 days before they tap. I told her that this is getting hard on me trying to make health decisions about her care and how soon she needs this or that. All she said was "not to worry, she'll be fine!" LoL THIS IS WHY I'M CRAZY! LoLoL

My Mom, dying from Stage 4 Lung Cancer, and the "tappers" are worried about her having aspirin?? And I think I'm the one losing my mind..lol

So, I guess unless she's bedridden, she won't get Hospice started. And I just hang around doing what I can, being there for her, and sometimes wishing I could go back home and be with my husband and our dog in the desert and this is just a bad dream.

There, I've said it, I'm selfish and not feeling like such a good daughter....but thank you for letting me type away some frustration.
God bless you and keep you from harm....peace, G
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