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My mom passed away from TNBC

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srb32281 View Drop Down
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    Posted: Nov 28 2018 at 1:27pm
My mom was diagnosed with stage 2 TNBC. She handled chemotherapy wonderfully and had a good response to surgery. As she was about to start radiation which was suppose to be the "easy" one she developed headaches.  But she was still herself.  about 6 weeks ago she couldn't eat without throwing up and just wasn't herself.  We already knew at that time she had a lesion on her brain but they were not sure if it was cancer since it was in an area cancer doesn't spread. I was concerned for her so my dad and I decided to take her to the ER.

They ended up admitting her and the goal was to figure out what exactly this lesion was since they couldn't biopsy it or do surgery since it was in the inner capsule. Her first night she had what they thought was a seizure so they moved her to the ICU.  She just wasn't herself again--but they thought it could be the amount of meds she was.  The neurologist came in and said they wanted to do a spinal tap to check the fluid. That is when my stomach dropped and I knew it spread to there based on her symptoms and signs.  I have worked in an oncology clinic for 13 years. After a few days on decadron she was getting better. Able to sit up, talk, etc.  But she was still so weak. They ended up discharging her to this day I regret doing this. 

Over that weekend, she got worse again. Hardly was walking without assistance but we took that as her being in bed for 10 days, she wouldn't eat or drink. It got to the point she was so weak my dad and I couldn't assist her anymore so back to the hospital we go.  They admitted her for dehyrdation.  We thought she was getting better but she still was weak, couldn't urinate, but she was responsive to us.  The goal was to get a shunt placed in her head for IT treatment and her oncologist was positive about the treatment so we had to be as well. 

Then on Nov 1st I got a call in the morning from the nurse who stated that my mom became unresponsive meaning she wasn't responding to their commands--another head CT it was and still stable as it was 3 weeks ago.  They moved her to another floor since the next day she was getting the shunt.  My dad said she was sleeping most of the day and he would come back up with me after work. When we go there she was still asleep and I noticed her breathing and mentioned something to the nurse about it--all i got was "yeah we think she is draining nasal fluid so we have her up a bit" to this day I wished I pushed it more.

My dad and I ended up leaving--1 hour later we got the call "We need you to come up here your mom is declining and we need family here". My dad and I raced up there I was scared beyond belief.  As soon as we hit the floor we were on we were told she made it and I just dropped to the ground crying.  The amount of people on the floor and chaos and the amount of people in the room--we had no idea what just happened.  Little did we know we had only 17 hours left with my mom.

We were told she suffered cardiac arrest and they are not sure why.  They were able to bring her back on a vent but her status was pretty serious since they were moving her to the ICU. We were told call family and get who needed to be here right away and they wanted to know what they should do if it were to happen again. The whole 2 hours is blur and scary.  

When we finally saw mom she was on a vent, had multiple medications going, they were trying to get her blood pressure up.  She was stable but they didn't know for how long.  My sisters who both lived out of town were able to make it the next morning. My dad and I didn't even sleep but she remained stable throughout the night and I believe she did because she knew my sisters were coming.  

Rounds were starting by the doctors and one who had been seeing my mom came in and told us she suffered respiratory arrest and they aren't sure why.  They weren't sure of her condition but the neurologist would come in and talk to us.  The neurologist came in and confirmed respiratory arrest and the devastating news during that code she had a lack of oxygen to her brain and from the CT she had swelling and severe damage to her brain stem. He stated "if she were to come to from this she wouldn't be who she was and would be required to need 24/7 care".  That was when I knew I lost my mom forever. My beautiful strong amazing loving mother passed away on Friday November 2, 2018 at 3:12pm and became my angel in the sky. 

If this damn disease caused this, then we need and must find a cure especially for TNBC.  What kills me is yes my mom died but she had a PET scan a week prior before her death and she had no other cancer in her body except in the spinal fluid and that lesion. That pisses me off because she was a fighter, she never complained, she was only 63 and this cancer had to spread to a part where there is possibly no hope. 

I'm trying to take her death as God planned it this way he knew in some way or form the IT treatment wasn't going to help her and he knew he had to end her suffering.  And god's plan can sometimes be good and sometimes leave us heart broken.  I'm glad my mom isn't suffering but here I am 37 without a mother. Without my best friend, without my whole heart and with my whole soul. She was my best friend and I depended so much on her in my life --and that is what she wanted to do for her family was provide for us with her love. It's going to be a tough year for me it has already been a tough 3 and half weeks and I know it's not going to get easier anytime soon. 

I have to have my faith, my strength, my hope to get through this life and know she is looking down on my guiding me through this with her signs I see on certain days and feeling her love.  
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parrynd1 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote parrynd1 Quote  Post ReplyReply Direct Link To This Post Posted: Nov 28 2018 at 1:56pm
Thank you for sharing you mom’s story. The only comfort I can offer is to say your mom is with you, just in a different way now. She raised you and is in you in so many things you do in your daily life whether it be a little mannerism or some life lesson she taught you. This disease is terrible and it’s very scary and just unfair in general. I feel touched by your mom’s journey as I have menigeal brain mets. I take comfort knowing I am in God’s hands and he has a plan for this whether I can see it or not, even if/when this disease claims me I know it is part of the greater good He has planned. I may not like it! But I can accept that. I’m glad your sisters were able to make it in time as well. I hope my family will have time to say goodbye to me. I feel like it would be hard to be taken suddenly and without any warning like so many are in car crashes or gun violence. I’ll be praying for your family to find comfort during this time.
Dx 9/016 Age 28, 3c, Grade 3, 1/5 Nodes, BRCA -, KI-67 >90%, I-Spy 2, DD A/C, Lumpectomy w/ 3 nodes removed, TC, Rads
2/2018 recurrence + brain & lung mets, Craniotomy, SRS, IPI-549, Opdivo/Avastin
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Post Options Post Options   Thanks (0) Thanks(0)   Quote srb32281 Quote  Post ReplyReply Direct Link To This Post Posted: Nov 28 2018 at 4:12pm
Thank you.  I appreciate your kind words.  The thing is I have no idea if this disease took her life since no one knows why it happened the way it did.  One doctor thinks she had a PE and it went to her heart. I told another doctor I worked with how I didn't know if I would be able to handle her in hospice since it was a struggle those last two weeks with her.  And as strange as this may sound I'm glad she wasn't able to see us or talk to us since it would've made it a million times harder. I guess you can say I am at peace with what happened.  

The most amazing thing in all of this when my sisters finally got there--her blood pressure never dropped it maintained until we decided to take her off the vent.  So I think she knew we were all there and was happy and at peace we were able to say good bye together and be there for each other.  The chaplain told us the hearing is the last to go so I'm praying she heard us say good bye or through out the night I came to her side held her hand and talked to her.  I know she can hear me now so I do talk to her even if I look like a crazy person.

I wish you the best in this awful disease and will pray for you. 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mainsailset Quote  Post ReplyReply Direct Link To This Post Posted: Nov 28 2018 at 7:55pm
Hello, and since I've been on both sides of cancer I have a bit of an idea of what you went through. There is such a strange feeling of helplessness, of 2nd guessing and the impossible as you are carried along on the journey of trying to help the one you love.

Your mom sounds like such a beautiful person and after hearing your story it sounds like she passed along her bravery to you. What a gift she gave you! I'm so glad she was able to hang on so that your sisters could say their goodbyes.

I took care of both my parents before they passed and both my sisters died of cancer. To this day, now years later, I still talk to all of them and my personal opinion is that it's a healthy thing to do. I've shared this story here before but will share it again...one time when I was particularly frazzled and trying to find my way through a lot of heartache and a crushing amount of things to do I looked up and could see what I knew was my mom coming down the hall towards me. She stood at the doorway, looked at me and then said very clearly, 'stop trying to catch all the arrows'.

That was such wonderful advice and I hope it helps you on your path. You may want to shoulder much of your family's pain as well as the day to day job of finding bits of normality again, but please remember to take moments to take care of yourself rather than spending all your energy trying to 'catch all the arrows'.

Best of luck to you and I hope you will visit this site often.
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 SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Nov 29 2018 at 9:40am
Dear srb,

Thank you for sharing with our wonderful TNBC Foundation family. 

I lost my mother to Metastatic Breast Cancer in 1964 when I was 20 and it still hurts.

You have my sincere condolences and I am sure everyone here shares my sentiments.

Wishing you some peace as you grieve. There is a book/CD I would recommend called Graceful Passages. If finances are tight, please send me a PM and I would be happy to send you copy. 

warmly,

Steve
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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