Mom starts chemo for triple negative bc Jan 3rd

sinemetu
sinemetu Member Posts: 2

Hi, I just found and signed onto this site tonight. I am the oldest child of 5 grown children and my Mom had a lumpectomy Dec 5th. My Dad has several businesses and we're all very busy within the family businesses. I have been taking my Mom to all her doctor appointments for the most part. After her lumpectomy, we went to the oncologist. We were aware she would be doing radiation, but that's when we were told it was "triple negative" and that chemo was to start Jan 3rd. It was quite a shock for both Mom and myself. By nightfall we were in the ER because she was exhibiting stroke symptoms (she already had a stroke in 08) and I feel it was the stress of being told about chemo.

I found myself very angry at my father for not taking the time to come to these appointments and placing me in a "secretary" position of getting all the info and reporting back to him. Being a survivor of uterine cancer, this standoffish reaction didn't surprise me because of the way they treated my own cancer in '06. I felt alone at the time. I don't want Mom to feel alone. Since she got the news of chemo, it hit her pretty hard and I've been doing my best to be there for her, take her to the appointments, make notes in a tablet for all the different doctors. Ask questions, etc etc. What I can't STAND is when my Dad takes her out for their weekly jaunts to a local club (bar) and every Tom, Dick and Harry gives them advice and input on what treatment she should be getting, what doctor she should be seeing etc. My Dad confronts me with "why isn't she taking a chemo pill like Bob's daughter" and things like that. I want so bad to say, "Why aren't you at the dr appointments and why are you taking advice from your bar friends?" But I hate to argue with all the already present stress with all this.

My Mom was informed by the Dr that the chemo regimen (Adriamyacin & Cytoxin every 2 weeks for 4 sessions to start and then Taxol for 4 sessions every 2 weeks) will result in total hair loss. She was very upset as she has always prided her red hair over the years. We both have our hair styled by a friend who has had lots of experience with women in chemotherapy. At my friend's advice, I gently discussed with my Mom about cutting her hair very short & stylish before chemo starts so that when the hair loss starts that 1) there's not so much hair coming out at once to depress her and 2) she can still feel pretty. We've sat and looked through a catalog from the ACS for wigs, headscarves and other accessories and she's very receptive to headwear. I say positive things like "Mom, I know you can really rock a headscarf." I know I can't totally relate because I won't be the one going through chemo. I want to be supportive and help to keep her mood light but dont' want her to think I am downplaying any of this. I get so frustrated with myself for trying to find just the right thing to say.

I also feel guilty because while I love my Mom dearly and will do anything to support her, I am so stressed and tired with the day to day regime of doctor appointments, trying to work the family businesses and "reporting back to my Dad". And trying to take care of my own kids and house in my "spare time" while other make plans and do their daily thing. I get angry and then I feel guilty. I do talk to my siblings about chipping in (I had a meeting with my sisters about everyone chipping in to make freezer meals for my parents so my mother doesn't overwhelm herself with trying to cook for my father.)

If I hear one more person say, "Well just tell your family to help"... sorry but that doesn't always work in the real world. And I can't just not take mom to where she needs to go. Otherwise, she will take herself or try to and I know she can't mentally handle these doctor appointments for all the terminology, doctor names, schedule etc. It's confusing enough for ME and I'm taking notes!

She goes in the hospital tomorrow morning for her Mediport and she pretty much TOLD Dad that he's taking her. I was proud of her. I know this is long and babbly, sorry.

I'm looking to find out as much as I can of others who have gone through and are going through treatment of triple negative breast cancer as well as other caretakers for tactics in handling family as well as ourselves. So much going on and I get overwhelmed at times. I am taking care of myself best I can as far as sleep and nutritional food (I'm on a strict low fat diet and before all this happened lost over 100 lbs. It has given me the discipline as well as extra energy to handle this as best I can) so I do realize the importance of that as well.

Thanks for listening,

Pam

Comments

  • rachelvk
    rachelvk Member Posts: 1,411
    edited December 2011

    I'm sorry about your mother's diagnosis, and the tough situation you've been put in. First off, thank you for doing everything you have for your mom. It sounds like you're both approaching the hair loss with a good attitude, which is about the only way to deal with it. I'm on Day 16 after my first chemo tx (AC-Taxotere), and I expect my hair will be gone by the end of the week - what a New Years.... But I have picked out a great wig and was surprised to find that I look really great in scarves and turbans. I don't think your mom will think you're taking it too lightly - and if you feel the need to be serious or express sadness, she'll understand that, too.

    It's very good that your mom may have started taking a stand about your father's role. Have you talked about this with your mom? It sounds like she would have the best chance of influencing his behavior, and sometimes a situation like this is just the type of thing to jolt people out of their old routines. I know my Mom has had to deal with complaining from my Dad about things related to my treatment, such as her spending so much time here with me after my surgery - but her response has been to look at him and say "It's not about you." So far, that seems to work.

    I wish you the best - and use this site however it helps you. There are some great women, each with their own stories and challenges, and it's a great place to vent and look for support. No one can do this on their own, and you certainly deserve support and advice as you help your mom get through this. 

  • sinemetu
    sinemetu Member Posts: 2
    edited January 2012

    Chemo is getting pushed off til Jan 24th. They couldn't put the mediport in due to complications. She had an ER visit and the arm in which her IV was put in for that got infected. It's mild and it looks like that should clear up soon and the port should be going in the week of the 16th.

    Mom is getting her major hair cut this Thursday with our friend. We have assorted headware on order through the ACS and that should be coming in within the next few days. But now she's convinced that she won't lose much hair. My Dad's denial has a lot to do with this. I'm all about keeping a positive attitude, but this bothers me. I guess if it were me, I'd expect the worst and then be happy if a surprise comes through. But from what I'm reading with her treatment and what the oncologist told us with Adriamycin and Cytoxin is that hair is going to come out a LOT about 2 weeks after the first treatment. I know this is a tough issue for her to handle. I DO understand it. I'm just unsure what to say when she says "I'm praying on it and I don't think I'm going to lose my hair." I hesitate and I know my 'poker face' is bad. I say things like "Well, let's take it one day at a time and see what happens."

    Yes, heck of a New Year's for you, I'm so sorry. I've been so exhausted and spent emotionally, the "holiday" was more of catching up on sleep, trying (unsuccessfully) to clean before all the dr appointment start up again. Thanks so much for responding, I know you have so much going on. Please keep in touch as how you're doing, feeling etc.

    Hugs,

    Pam

  • chrissyb
    chrissyb Member Posts: 16,818
    edited January 2012

    Hi Pam, I'm not TN but I did want to give you a big ((((((hug)))))) for you and for the support you are giving your mom.  If she is in denial about loosing her hair, there is not much you can do to persuade her, the only thing you can do is be there when it does start to fall.  Hopefully by the time she has her Mediport put in the reality of what's going on will have sunk in a little and your dad's reaction is very typical.  Most men don't know how to handle this kind of Dx and so do the worst thing.........it has a lot to do with the fear of loss.  Once your mom stars treatment, I'm sure things will change for the better as he will see that she does need him.

    Good luck with everything and please let us know how you both are.  I'm happy that you are well after your brush with cancer but you also must keep in mind that you need to stay healthy if you are to help your mom.

    Love n hugs.  Chrissy

  • dlb823
    dlb823 Member Posts: 9,430
    edited January 2012

    Hi, Pam ~ I just came across your post tonight, and wanted suggest if you haven't already, that you check out the Triple Negative Forum.  (Click on Forum Index above and scroll down until you see it.)  I think you may find a wealth of information within that section related to TNBC.  I'm not TN, but I know it can be tricky to treat, and I've learned from being on BCO for some time that it's extremely important to be working with an oncologist who is very experienced treating it, and up on the latest TN research -- not just a general oncologist who probably doesn't see that much of it and has to keep track of what's new for a wide range of cancers.  

    And if your Mom is still stressed about chemo, I wanted to suggest something that helped me with my fear prior to starting it.  It's a guided imagery CD by BellaRuth Naperstek, and it's available @ www.healthjourneys.com.   

    I don't know a lot about them, but there's also something called the Penguin Cold Caps to prevent hair loss.  You can use the search box to upper right to find one or more threads here about them.

    And lastly, I just wanted to suggest that you show your Mom BCO and get her on the support group thread here for women starting chemo this month. (Again, click on Forum Index and look for the Chemotherapy section.)   It's a great way to have more day-to-day support for what she'll be going through.    (((Hugs)))  Deanna

  • hydeskate
    hydeskate Member Posts: 297
    edited January 2012

    I have triple negative but much younger than your mom, I had Abraxane followed by AC, I lost my hair two weeks after starting chemo. I actually had a college women's soccer team cut, style my hair before my coworker gave me a military buzz cut. Unlike my mother I preferred going bald, I found funny hats to wear during the winter. 

    My mother also had cancer (ovarian) and one of the most upsetting things was the loss of her hair.  She refused to let anyone see her without hair she even went to bed wearing the wig.  I remember searching for wig shops around town for my mom, she was a strong woman who rarely showed emotions until that week we spent looking for the right wig  I didn't understant until I faced losing my hair.   I wish I had been able to go to all her appointments like you but my mother choose to go by herself. 

    Dealing with family can be tricky because they always talk to someone or read something and start questioning.  I would go to the Triple Negative Breast Cancer Foundation website to get more information, the biggest thing is there is no pill for Triple Negative, Only option is Chemo, which TNBC responds well to, the pill thing is a question I get asked all the time. I

    Ignore any statistics you see because everyone responds different.  Heck I was stage IV out of the gate and have been NED (No evidence of Disease) since 2009.  I keep a Carebridge page to update family and I will link articles pertaining to questions that have been asked.   Basically I am having to educated the family while also telling them what is going on. 

    It is very furstrating trying to make sure you don't say the wrong things, basically don't treat her like she is helpless.  That is what my Dad and Sister would do when I brought my mom home on weekends (she moved in with me 9 months before her death and lived with me 7 of those) she lived with me becasue I was 30 minutes from UNC Cancer Center. 

    She knew her body and limitations she would drop me off work in the morning drive to the Cancer Cancer Center to get treatment, come back to my work and curl up the sofa in my office until it was time for me to get off.  She would cook something, I learned quickly to let her do what she had always done, we ate and then she would rest again.  When we went home all my sister and Dad would due was nagg the crap out of her until she went off on them, I had to tell them to lay off. 

    Like her I know my limits, I also learned that it's better for the family to keep them abreast and educate them at the same time.  It was very over whelming at hte beginning having to repeat the same thongs over and over again to cousin, aunts, friends, etc.  I got to the point I refused to answer any phone calls, so everyone was calling my sister she too got overwhelmed.  When I finally got adjusted to my new life I started my carebridge blog. 

    It sounds like you are very close to your mother, just being there will help her allot.  Also when you talking or just lounging make sure to take note of her body language, you can learn allot, and it will give you a clue to what she needs. Some men can't handle the doctor appointment and treatments, my Dad being one of them he emotionaly couldn't handle it, some will also block our or refuse to observe what is going on right in fromt of them. (my sister).  

  • mermaid_1010
    mermaid_1010 Member Posts: 56
    edited April 2013

    Pam, I am just reading your post now... In this time I hope your Mom's hair has regrown.  I know how upsetting it is. I have TNBC that came back last year.  I found out about Penguin cold caps just in time before I started chemo the second time around and am so thankful I did.  I have a full head of hair.  I hope she is in a better place now, I hope it is growing fast for her.   :)

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