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Mom has cancer, need help helping her

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clark2018 View Drop Down
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    Posted: Jul 16 2018 at 1:31pm
Hi My mom was diagnosed with TNBC in June. She is T2N1Mo Stage 2B grade 3. She is undergoing 4 month of chemo followed by (she thinks probably) full mastectomy and then radiation.  She is 65. They think it is highly unlikely it's genetic and her doc, the genetic specialist and my gyno all told me I don't need to be screened (based on that family cancer screening form). My sister (lives in another state) saw a new doc and he is having her tested. What do you all think?

Also, my mother has a history of diagnosed and untreated mental health issues. My sis and I have tried our whole adult lives to get her to seek help. She has always said there is nothing wrong with her, everyone else is sick in the head. (direct quote). She hasn't had a doctor or insurance in 20 years. Now she has social security and medicare. So, after 6 weeks of test and her first chemo 2 weeks ago, she is now barely hanging on. She did finally find a family physician and got  Celexa for anxiety/depression. I am working with her social worker and nurse navigator to try to make sure everyone explains everything to her clearly and plainly, and multiple times. 

So my second question other than the genetic testing is... does anyone have experience with this? I have a 5 year old and a full time job. I went to every appt with her through her first chemo appt. I can't continue to miss work and do all of that. But I don't  know how much more I can do. I cannot be at every appointment to clarify doctors orders or appointment times.

Sorry that was so long

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clark2018 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote clark2018 Quote  Post ReplyReply Direct Link To This Post Posted: Jul 16 2018 at 1:32pm
Edit from last post-- she has UNDIAGNOSED mental health issues.. we think anxieity, depression, panic disorder.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mainsailset Quote  Post ReplyReply Direct Link To This Post Posted: Jul 16 2018 at 5:46pm
Wow, you have a lot on your plate! Many people here have been caretakers of a loved one who has Tneg and so you'll find a great deal of support.

First off, it won't hurt to get yourself tested and in fact will then be one less thing to worry about for you. Whatever the results, you'll then be that much closer to having answers.

Since your mom suffers from the depression this may turn out to be a godsend for her to finally have a team get that addressed. Often, doctors will prescribe a medication that does double duty and addresses depression and anxiety. But, from personal experience of taking care of my sister, I'll also suggest that you have the doctors test her for adrenal issues or Addisons, which is adrenal failure. It could be that her normal sensitivity to stress will be compounded by the whole doctor thing and of course treatment so it's a good idea to get that looked into. My sister had Addisons and it was not diagnosed and really made her life wretched...but you can fix that.

As far as being the #1 caregiver, you simply cannot work full time with a youngster to care for and raise and split yourself all the time being there for your mom. You won't make it for the long haul and that's really important. Please ask your mom's social worker what options they have through various organizations to help out. There are financial aid packages, housekeeping aid, drivers back and forth to appointments and all kinds of things. That's what money raised by all those pink shirts goes to. Find out what's available and sign up for 'em all!

As far as working with the medical team, make sure that you receive or have access online to every report and office visit doc. This will give you the ability to see, even if you're not there, just what is going on and if anything needs to change. If there's anyone on the doctor's team who will respond to emails, get their address.

Please feel free to ask away if there's anything you need help understanding or if you just need to vent...this place is great for venting!
dx 7/08 TN 14x6.5x5.5 cm tumor

3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Bfriend Quote  Post ReplyReply Direct Link To This Post Posted: Jul 16 2018 at 7:11pm
Hi, I wanted to suggest looking up NAMI.org (National Alliance for Mental Illness) They have many chapters in smaller towns, not just big cities. My mom attends a chapter to support my brother with bi-polar. They have support for both the patient and caregivers. Also, they should be able to give you lots of information for resources in your city, county and state. Don't be hesitant to ask for help- sign-up for dinner deliveries at church. I know that people want to help if they only knew how to help and where. I am sorry that you are under so much pressure and I know how hard you are trying to be there for everyone who needs you. God Bless!
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clark2018 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote clark2018 Quote  Post ReplyReply Direct Link To This Post Posted: Jul 17 2018 at 10:41am
Hi -update. My mom was acting strangely at her blood-draw yesterday (today is her second chemo treatment). Hospital called me and said she made vague self harm threats. They sent the police to look for her to make a pscyh eval last night but she couldn't be found. Today she actually turned up for chemo #2. The had a team of staff waiting and were able to take her to a private room and then get her into an eval. The hospital person I talked to doesn't know what will happen next as it depends on the assement of her mental state. She could be released with new meds and referred to new docs... or something more serious such as a hold. 

She is on the verge of losing her apartment (she has missed a lot of her part time job) and sometime soon won't be able to pay rent. We know she cannot live at our house with my small son. I am sick.

Thank you all for your feedback. This is the best thing that could have happened. I just hope she isn't trying to pull the wool over the doctor's eyes. She is very good and pretending all is good when it is not. 


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Post Options Post Options   Thanks (0) Thanks(0)   Quote mainsailset Quote  Post ReplyReply Direct Link To This Post Posted: Jul 17 2018 at 3:54pm
Well, that's a pretty scary twist to the story. I'm so glad the doctors' office went ahead and sent out the police and then went forward with the eval when she came in. Kind of like getting team members when you've been on your own trying to figure out the best next step.

The pretending bit that you mention, boy I sure know what that's like and you really want people to believe you that something else is going on.

Do talk with the social worker in the clinic she's going to, there are people and organizations that can help and the sooner the better. In order to be treated properly and most effectively your mom is going to have to be stabilized mentally and financially.

One of the hardest parts of this disease is when the things roll over you that you can't do, that you feel helpless to correct. Having your mom in your own home with your son when all this is going on wouldn't help anyone. I found it was helpful to try and compartmentalize the problems I faced. It sounds like you're doing a good job to sort through some impossible tasks. Hang in there and please come back as often as you want to.
dx 7/08 TN 14x6.5x5.5 cm tumor

3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
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Post Options Post Options   Thanks (0) Thanks(0)   Quote clark2018 Quote  Post ReplyReply Direct Link To This Post Posted: Jul 17 2018 at 4:54pm
Thanks for your reply. She called me from the hospital ranting and raving  and saying she didn't do anything--and contradicting herself and hung up on me. I called back and the hospital won't give me any info at all due to HIPPA laws.  She now won't speak to me. I all I know is she is probably there for a 24 hour hold and is safe. So, that is good. 

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Post Options Post Options   Thanks (0) Thanks(0)   Quote mainsailset Quote  Post ReplyReply Direct Link To This Post Posted: Jul 18 2018 at 7:48pm
Yes, the 24 hour hold is a good thing, observation is a friend. I hope you'll be able to talk with the doctors and see if they will do paperwork to give you better access for what is going on or some kind of power of attorney with medical decision making. Take good care of yourself.
dx 7/08 TN 14x6.5x5.5 cm tumor

3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
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clark2018 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote clark2018 Quote  Post ReplyReply Direct Link To This Post Posted: Jul 19 2018 at 9:21am
No, the hospital let her out after about 8 hours probably because she went voluntarily. They wouldn't even tell me her status- only she can divulge that info. Anyway, she is out and acting like nothing happened. She won't even answer me and tell me if she was referred to a psych/ologist/iatrist, got medicine, nothing.  I am taking a step back as I cannot continue to deal with the drama. 


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Post Options Post Options   Thanks (0) Thanks(0)   Quote mainsailset Quote  Post ReplyReply Direct Link To This Post Posted: Jul 19 2018 at 11:57am
Good.
dx 7/08 TN 14x6.5x5.5 cm tumor

3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
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