Fighting for time: I was diagnosed with... - SHARE Metastatic ...

SHARE Metastatic Breast Cancer

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Fighting for time

Aelgersma profile image
13 Replies

I was diagnosed with brca + breast cancer in 2011. After a double mastectomy, hysterectomy & ovaries, 5 years of appts, tests and meds, I was told in Sept breast cancer is back. Stage IV metastasized to bones and liver is full. I am getting chemo as I write this. Round 6 of the red devil. Fighting for more time with my 19 year old daughter. Looking for support from someone who has walked in these shoes. I am heartbroken.

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Aelgersma profile image
Aelgersma
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13 Replies
SusanDB profile image
SusanDB

Dear Sister, I am walking in similar shoes, and I want to encourage you to keep hoping. I was diagnosed with ER+ ILC in January 2016, partial left masectomy, 4 rounds chemo in April. In July, as we were preparing for radiation, learned that the cancer had spread to one vertebrae. But it was aggressive, spreading rapidly. By December 2016 it was in over half my vertebrae skull to tailbone, hips, sternum, 2 ribs, and liver (bigger in February than in December). Ibrance and Letrozole, 2 rounds in fall, didn’t have any positive effect. More radiation over Christmas. And now on 3rd round of oral chemo; first dosage made me miserably sick, but new dosage I'm feeling better.

I too have a 19 year old daughter who is sort of lost. I so want to be there for her. Last fall I was anxious a lot, so much that I cried and worried often. A counselor named that as perseverating behavior, and she encouraged me to focus on what I can do rather than worry about things I cannot do. So I've done several positive things. But there are others I want to work on.

I know sometimes I'm fatigued, or head in a fog, or sick. But making a priority of things to do with my daughter in the present (and 19 year olds often are so independent), and things to do for her to enjoy later on -whether I'm here or gone-well those are important.

I read about a daughter who wrote a series of letters for her mother to read when she was lonely, worried, remembering, etc. Then the teenage daughter died in a car crash. Her mother found the letters, opens one only under the specific circumstances, and is receiving the blessings of her daughter's thoughtfulness.

I will pray for the chemo to work on shrinking your tumors, for you to tolerate the medication, and for you to have hope one day, one week, at a time.

daf10 profile image
daf10

heed the words of SusanDB as she is giving you sound advice There are many new drugs on the market which are helping stage 4 women live longer and healthier lives. besides the chemo that you are presently taking there are also a lot of clinical trials going on which you might be eligible for I know it it is hard not to focus on the future, but try and live for the moment and enjoy the things that you love and hold dear Remember we are here to support you. Let us be your outlet for your fears and anxieties.

Aelgersma profile image
Aelgersma in reply to daf10

Thank u for reaching out to me 💙

Partia profile image
Partia

I am so sorry sweetie. My stage 5 came back after 15 yrs. To bones and a little in my lungs. Praying for you.

Partia profile image
Partia in reply to Partia

Stage 4 I meant

Dartyus profile image
Dartyus

I am praying for a miracle for you and that you are able to tolerate you medication so you will be on the road to recovery. God bless you and your daughter.

Darcydaely profile image
Darcydaely

Praying for you!

RLN-overcomer profile image
RLN-overcomer

Greetings: Sister/Warrior/Aelgersma and SusanDB I serve a God who is still in the business of working miracles. I am one of them .In 2006 I was misdiagnosed. in 2007 I returned to the medical facility with an additional lump that had metastasized. A lot of the medical staff couldn't look me straight in the eye as they ran around nervously sending me for more test . The 38 year experienced oncologist in 2007 said I was not going to live to see 2009 . I am a living testimony.( Dr./God )restored my body which has no evidence of disease present. Some might call me a holy roller, Yeeeeesssssss I am honored and proud to be so designated.(smile) I pray you too will be a living testimony.Sisters/Warriors/Overcomers do your part, put your hands up in praise and prayer and God will do the rest. May God grant you ,your daughters and your loved ones health and happiness Amen .P.S. Share gave me this magnet a few years ago that is on my refrigerator that had this wonderful phrase on it: "Just when the caterpillar thought the world had ended, it became a butterfly".

03Amegios profile image
03Amegios

I will be praying for you.

Jan_Schnabel1 profile image
Jan_Schnabel1

Hang in there my warrior friend. You are far from alone. I know the fear you are feeling. I am desperate to see my 15 year old graduate from high school, and I am determined to do just that! The letrozole and ibrance are working well for me, but I am tied to my nutritionist, my naturopath, my acupuncturist and anyone else I can find. In addition to my prescription meds, I'm taking mega doses of D3, calcium, turmeric, flax seed, fish oil and CBD, among others.

So know that you're not alone, try to stay positive, and remember that we are all praying for you.

Jan

Cowgirl2 profile image
Cowgirl2

I am so sorry to hear this. Your story is similar to mine.

I am 52. In 2005 I was diagnosed with Stage 2B IDC and DCIS. I first had a lumpectomy. I had 4 rounds of heavy doses of The "red devil" and rounds of Taxol. Then I had 37 radiation treatments. I was on Aromasin for 9 years and then found out on March 31, 2014 that my cancer was back. On April 1, 2014, I was told I had Metastatic Breast Cancer. It was definitely a hard pill to swallow but I have great doctors and a great Goo so I am doing good right now. Sending prayers your way.

Aelgersma profile image
Aelgersma

Thank you to all who have reached out. I am fighting not only cancer but "sad". I finished round 6 of the red devil, and it's scary to move to something else as that harsh chemo was doing what it was suppose to. My tumor marker went from 3446 to 282. I will be starting ibrance and fluvestrant after a ton more labs and scans. I am trying to find happy in every day but sometimes it's hard. I live in NW iowa and it's still so cold and dreary and gloomy which probably doesn't help. Prayers to everyone!

Tera987 profile image
Tera987 in reply to Aelgersma

That is great news keep up the work. The path is exactly what you need. What a jump in your numbers. 😘

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