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So many questions--again....

Elsiekaye
Posts: 3
Joined: Dec 2016

Hello everyone,

This is my 2nd time on these boards-first time after my dad was diagnosed with Stage IV esophogeal cancer in 2012and everyone was very helpful and comforting. My mom (age 67) has just been diagnosed with Stage IV small cell lung cancer; it has metasticized to her spine (they are trying to shrink that tumor with radiation)and one small lesion on her brain (think they will be attempting radiation on that too but the spine was top priority). She has been in the hospital since Monday and it's all happening very fast. She gets released tomorrow and will do 7 days of outpatient radiation. Once they determine a course of chemo they will schedule that in about 2 weeks. I live with my young kids in Boston area and mom lives in NJ. I'm trying to convince her to come to Dana Farber/Brigham Womens' for a 2nd opinion and possibly to have chemo there so I can be with her full time to help her go through it. She has very little support where she lives and I worry that she will need more help than she thinks (she lives alone since my dad passed 4 years ago). I also want her to get the best treatment possible. Although it's very advanced I think they've come a long way with chemo and I'm guardedly hopeful that she can have a decent quality of life as this progresses. I would love to hear of anyone else's experience, thoughts, etc. Thanks so much. Holly

dennycee
Posts: 836
Joined: Mar 2011

Welcome to the lung cancer boards. So very sorry for the need that brings you here. My experience is with non small cell cancer but I can share what I know. They are now using Opdivo in clinical trials for small cell. Actually there are several promising new lines of treatment in small cell. Dana Farber would be an excellent choice for her treatment center. The treatment is difficult for anyone. Your mom may not be comfortable outside her home though.
How old are the kids? They're in school now? Would your inlaws be able to provide care for your kids in your home so you could stay with your mom a couple weeks

Elsiekaye
Posts: 3
Joined: Dec 2016

Hello again Dennycee-

Thanks for getting back to me. Sadly, I was on the esophageal boards 4 years ago when my dad was diagnosed with stage IV esophageal cancer. He passed away about 4 months after diagnosis.  And here we are again. Hard to comprehend. I had read about Opdivo but we're still just getting the initial treatment plan set up. And I'm waiting to hear what the 2nd opinion (online) from Dana Farber will be. (not expecting a different diagnosis, just want to make sure the treatment plans are similar). I've been here in NJ with my mom for 9 days now. I'm taking her to radiation tomorrow and then have to head back to Boston. My aunt and cousin will be taking over driving/helping out through Tuesday, when her radiation tx ends. It has been so hard to watch my mom go through this, but it has also been a blessing to spent this much time with her. I am cherishing every moment.  As for chemo, even the radiation has been tough for her (making her tired and she also can't drive while on the pain meds.). She is excruciatingly independent and that has been one of the toughest parts for her.  With my dad gone, it is going to be so difficult for her to go through chemo here while living alone.  Right now she says she wants to stay here in NJ for tx, but i think she is warming to the idea of coming to Boston, as she realizes that she's sick and needs help and can't do it all alone.  

My daughter is almost 13 and my son is 9. Unfortunately, my in-laws can't help, as they are much older and live in Pittsburgh. (This is the time in life I begin to wonder why we ever moved so far from family). This week the kids stayed in extended care at school until 6pm and my husband left work early to get them. I have a wonderful, supportive community where I live, so I could possibly do this again for a few weeks while she undergoes chemo here. It has been tough on my husband and kids but they know it's been even tougher for my mom. I will keep you posted. Thanks so much for listening. xxoo

 

dstaton
Posts: 3
Joined: Dec 2016

Hello Holly -

You appear to be a kind, good hearted person, willing to go to such lengths to help your mom go through this.  In fact, your post is the reason I joined this forum today.  Your mom  is blessed to have you, your husband, and your kids.  But having you all around her instead of in another state sounds like it would be much better for everyone involved.  While she is the one who physically has cancer, it affects your family just as profoundly.  Yes, having cancer can be terrifying, and losing a measure of independence is a challenge.  But as you pointed out, Boston is where your life,  support system, and family are, and you will be more able to help her if you are on solid ground yourself.  It's like what the flight attendants tell you before takeoff:  Secure your own oxygen mask before assisting others.

I was diagnosed with Stage IV NSCLC last year, and in the beginning, I thought the cancer was mine.  The rest of my family were concerned spectators, but hey -  I was the one with cancer.  Didn't take long though, to see the suffering my family was experiencing, and became clear in the first few months that the cancer was all of ours.   Their suffering was as difficult for them as mine was for me, just a different kind.  My kids (10 and 20 at the time) were afraid to lose their dad, and my wife was terrified of losing her husband.  Cancer is very generous.  Everyone in the family gets their serving of pain.

Glad to hear your mom is warming up to the idea of moving to Boston, where your support system could become hers.  You won't be much help to her stressed out about her, her treatments, and taking care of her at the same time worrying about your family back home.

The fact that her radiation treatments are ending, and the chemo hasn't started yet, makes this an excellent time for you to take her to Dana Farber for a second opinion.  If you take her before chemo, and present it as an option to consider and not a decision that has been made, that might help with the transition.  I wouldn't wait though, as switching doctors and medical facilities during ongoing treatment doesn't sound like the best of ideas.

If I were in her position, I personally would rather leave home to be surrounded by a loving family than stay at home to be passed around between friends and relatives for errands, rides to the doctor, and random emotional support.  I'm not her, and of course I don't know her.  Doesn't matter, though, as this is a decision she has to make for herself, and make it pretty soon.  Yes, it sucks that cancer is pushing her to make decisions much faster than she wants.  But as my catchphrase has become since my diagnosis, "it is what it is".

Best to you,
Dale

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