Coping with mom's diagnosis & next steps

Emilylaughed

In October, my mom was diagnosed with stage III breast cancer.



At first, when we didn't have any details, I was beyond terrified. My mom hadn't been to a doctor all of my adult life. She swore that she'd rather just fall over one day. Something changed, and I still don't know what it was... but she went to the doctor. And good Lord, from that time on, she was a trooper.



It's been 6 months. Cancer doesn't terrify me the same way it did in October. But the thought of losing my mom is still scary.



She's done 8 rounds of chemo. She reacted well to treatment. The tumor, which was enormous, has shrunk incredibly well. We had one tweak to treatment, changing up the order of her chemo cocktail at Christmas because of a rash. Other than that, she's felt better than she has in years. Her attitude is incredible. And I've stood by her side, fighting every step of the way.



Next up on the plan is a mastectomy. Today, we met with the surgeon. The rash came back this weekend. The surgeon did a biopsy, but didn't seem overly worried about it. Tomorrow we meet with the oncologist again.



It's been six months since this overwhelming terror has overtaken me. Once the initial shock was gone, my focus shifted to taking care of my mom. To learning about anything and everything that I could that would make her strong, help her heal, and focus on what happens when she gets better. I've kept her busy. I've taken care of things that she can't. I've talked to insurance, doctors, schedulers, and I've done it all without falling to pieces. I've cooked, I've found exercises, and I've spent time.



Dear God, today I feel like I've lost it. I'm standing on the cliff and looking out wondering if the chemo was enough—standing here and knowing that my mom is squarely relying on my support to continue to pull her through—standing here and knowing that no one's life is forever, but hoping so much to have her here a little longer... I feel so unbelievably alone.



I know I can't let her see how scared I am right now. I'm the rock. But I'm having such a hard time keeping it together. Things are changing. I knew that after chemo, we would be entering into a new world. There was so much to take in today, though—surgery details. That stupid rash that could be so many things... worst case, cancer spreading. The PET was clean, except for the original tumor, but who knows? Every path is different, and cancer is unpredictable. The rash wasn't there a week ago when the scan was run. And now I'm scared.



I hate feeling so weak. My mother's faith is so strong. I wish I had just an ounce of it right now. I pray with all of my strength that the fight is worth fighting, and that everything is going to be ok in the end. That in a year's time, all of this will be behind us, and we can be living happy and healthy lives. Making memories. Loving each moment.



I want to be loving each moment right now. But why can't I breathe into this pain? I can't find the presence to focus enough on the time that has been given, and instead I am dwelling on what's been lost. Logically, I know this is backwards. But I can't help myself.



How do you cope with all of this emotion? How do you stay strong for your loved one? What words of wisdom pull you through the dark times? How do you keep focusing on hope? We didn't even really get bad news, and yet I've fallen to pieces. Have I just tried to stay strong for too long?

Margi1959

Hi Emilylaughed

So sorry you're having to travel this part of the journey.  Yes, it's very scary but it sounds like you're already doing an admirable job.  I was my mother's primary caregiver in her final round with cancer, but this was her third time at bat.  From her initial diagnosis at Stage 1 - she did live another 16 years so, a cancer diagnosis isn't necessarily an immediate death sentence anymore. 

My mantra getting through my mother's illness was:  "you never know how strong you are, until being strong is your only option." (you'll see it in my signature below, too - I still carry it)  Hopefully, you can get some mileage out of that, as well.

Hang in there,

Margi

regbeach

Emilylaughed, You have me in tears.  How old is your mother? I am going through a similar thing.  I don't have an answer.  I try to "give myself permission to cry" and some days I just don't want to talk about it with anyone because I don't want to cry.  What prompts it -- someone asking how I am doing.  The thought that runs through my mind is "You have no idea what I have been through because there are no words that can adequately describe it."   Sometimes with mom, I see a glimpse of her old self or I feel sad and fight back tears. "Trust in the Lord, with all my heart."   My long time boyfriends says I break down too much, that I have to be strong.  He doesn't understand the crying phone call is just the 'not strong' part, every other part of the day is "strong beyond words."

My mom is 73. She has a large stroke in June. She can only walk with assistance, can't use one arm, doesn't understand all communication and, in general, can't speak (except for intermittent, coherent words she is able to get out).  She continues with therapy and each accomplishment is a miracle.  I moved in with her and take care of her which has put a tremendous strain on my long time relationship especially since he travels for work and goes to our house in another state periodically.

For many months, I stayed up late researching insurance, medicines, therapies, on and on- looking for knowledge to negotiate through this all and looking for hope.  An ICU nurse told me "No one knows how they will do this, but everyone finds a way."  I have no idea how I have made it this far- almost 1 year.  In January, her shower aide found a lump which we had removed in April.  Now, I research chemo and look for a clear answer.  We are at the point of deciding if she will get chemo- Stage 2, triple negative, Grade 3.  Thursday we have to decide.  I still need to explain it to her in simple words, with pictures.

The MOs concern is her inability to communicate if something is wrong.  My greatest fear is that she will get some severe infection or some catastrophic thing will happen because we chose chemo.  I share your fears.

The day of surgery I was a wreck. I slept a few hours and had to be at hospital at 5:45 am after showering her, cab in NYC, 2 hrs of waiting and hearing about all the risks of surgery from various people who come in the pre-op room, waiting for surgery to be done was torture.  I checked out the hotel, drove the car to a parking garage, just expecting to pull in, get my bag together, sit and regroup.  Instead immediately upon entering, I had to get out of car and give my keys to an attendant.  I said I thought I would just park.  He said you are parking.  The tears were coming.  He told me how to get back to hospital, the wrong section, a tunnel, turns.  It was just TOO MUCH.  I burst into tears...to park my car.  He gave me a hug- a stranger in NYC.  He told me to "Be strong" which when my boyfriend said it seemed incompassionate.  

You will breakdown and so will I but I think it's OK.  We are human.  As I was told years ago, give yourself permission to cry, then get on with your day. 

You are in my thoughts.  We will somehow do whatever needs to be done!