Seriously? Mom has stage IV with spinal metastases?

Zelby · July 2012

My mom had ER+/Her2+ breast cancer 10 years ago and has been followed all this time at Dana Farber with clean mammograms, etc. However, she was consistently complaining of hip pain and then back pain. Her primary care doctor played around with her statin, ordered physical therapy, etc., for months, but apparently didn't notice that her calcium levels were increasing or that she had abnormal bone scans nor did he think to suspect that as a breast cancer survivor she might have bone metastases. She called with questions about her pain but he didn't call her back for several weeks. I begged her to get a new doctor, to call Dana Farber, to call his office again, to give me his name so I could call and ask why he wasn't returning her calls...and then two weeks ago she had such searing pain that she found herself in an ambulance on the way to a local general hospital. Here we are now with a Stage IV breast cancer diagnosis, emergency radiation every day, inpatient treatment at Brigham for pain control and things are a total mess.

She and my father divorced after she found out that he had been cheating on her during her first round with cancer and we live very far apart (I live in North Carolina, she in Massachusetts). She has a nearly-completed house that she's been building for 3 years and I'm trying to get it habitable with furniture from a home she owns down here that she purchased after the divorce but decided was a mistake. She hates it here and misses her Massachusetts friends and the only thing that seems to be keeping her going is her dream house.

She doesn't seem to understand that we need to make decisions and act on things quickly. Her prognosis is less than six months, though the medical oncologist was a little bit more optimistic than the radiation oncologist and they are going try some drugs.

I'm beyond distressed. I'm angry at everyone, I'm sick at the thought she may never be able to live in her house, and I just don't know if leaving her so far away is the right decision. I have a little bit of flexibility right now because everyone at work feels sorry for me, but I have a very demanding job and a husband who lives five hours away in the opposite direction (married two months), so I've been flying back and forth but I can't live in Massachusetts and I can't afford the time or the money to make bi-weekly trips for much longer. She hates it here in North Carolina and if she moved her she'd be very isolated because my sister and I will be the only people she really knows and I can't spend endless time with her. At most she'd have company for supper in the evening, and even at that, not every night as I'm in a long distance relationship and often have work-related evening "entertainment" committments, and my sister won't make the time.

I just don't know what to do. Every time I think of it I just want to lay my head down on the table and cry. Is it crazy to leave her with a personal care assistant and a visiting nurse in the house she has poured her heart and soul into and which is within walking distance of her dearest friends? Am I just in denial that this could possibly work? She has enough money to keep her comfortable and afford reasonable care, even if she has to pay for some or all of it of pocket. But can I really trust hired help? Friends are great but they aren't family.

Thanks for reading my rant. This is the first place I've found where there seems to be an active caregiver/loved-ones community and I'm so tired of editing myself and tailoring my message to each person I speak with, all of whom are giving me conflicting advice about what is best to do. My sister thinks she should move down here, but frankly, my sister can be feckless and often has poor judgment, plus I know she won't put in the time. I just would hate for my mom's last months to be sad and lonely and full of regrets.

Laurie08 · July 2012

I am so sorry for what your mother and your family is going through. It is so tough to try to deal with the issues you have on hand and all of the feelings swirling around. I just have one question, what does your Mom want? I know she doesn't seem to see the time frame of things but I think what she wants is what matters most. I would sit down and talk with her, or call her since you aren't geologically close and tell her it is important for her to make a decision so YOU know what to do to help her. Give her a couple of days to think about it and then talk again and put it into action. If things don't work out you can change them.

I have had BC and lost my mom to BC and one thing I learned about my mother having BC is it is not about me or what I want. She was a person before I was born, she has needs and wants and when someone is going through something so difficult you should just try to make it easier for them. You might not agree with it, or be nervous about their choices but she is smart and deserves to have the final say. In my humble opinion.

Odds are it won't be easy no matter what, what will be will be. But, you can both live with no regrets and what ifs.

I hope this helps and that I did not over step at all. A big hug to you and your family.

SheChirple · July 2012

I agree with Laurie. You must talk to your mother.

I would respect her wishes and, if possible, commit to spending one full weekend a month with her, and more as needed. Then do it. It sounds like that 72 hr commitment is more than you can give her locally if you moved her to you.

If you and sister could alternate weekends. At each visit you could monitor, help and plan. Get to know her caregivers while you are there.

Help her to get her full affairs in order, as well.

Bless you and good luck.

Zelby · July 2012

Thanks so much for your quick reply.

My mom and I have had many, many (many) discussions about it. She wants to be in Massachusetts. I want to help her have what she wants. But one big problem that I see is that her cognition is very cloudy, partly from the pain meds, partly from the pain, partly denial, and partly because I think she was already getting a little cognitively impaired (I noticed it especially when I was planning my wedding... she couldn't help with the most trivial tasks and instead kept giving me more things to do -- even getting her to help with the escort cards was a challenge even though she said she wanted to do it [and as an aside, she did not assign my father a table and I had to send friends scrambling to get her right before my ceremony so that he wouldn't know he'd been snubbed -- it was unintentional/maybe subconcious, who knows?]).

The oncologist said that her calcium level -- which is now under better control -- may be contributing to her cognitive impairment and sometimes she seems so lucid, but the nurse at Brigham told me that she spent about an hour and a half talking about rehab facilities and couldn't get my mom to make any sort of decision, even though beds were getting snapped up left and right and she couldn't stay as an inpatient at Brigham for much longer. I had to get on the phone at the nurse's request and tell her that she had to make up her mind. It was just so weird to have our roles flipped.

I went into her house here in North Carolina before my last trip up last week and took pictures of every single piece of furniture and artwork and have movers waiting on standby who are extremely compassionate, but she couldn't/wouldn't tell me what she wanted me to have moved even during multiple visits to the hospital in which we talked for hours (the new house is smaller). I didn't get a list until today -- and now I have to let the movers know so that they can find the right size truck. We lost a precious week with her delaying being willing to even look at the photos and let me write things down. Now I'm working from vague descriptions relayed by my sister who was with her today. My mom is also making changes to the plan with the builder and driving him absolutely crazy because he is trying to get a certificate of occupancy as quickly as possible -- now she may want the blue tiles, and instead of the white paint maybe buttercream would be better (etc.). It's as if she is in complete denial that there are time constraints and that nobody is going to be able to accomodate her at the snap of a finger and she needs someplace to live if she's staying in Mass. We need a quick temporary set of decisions and we can move other furniture up or around or pick different colors later. She was transferred yesterday to a rehab facility near the hospital so she can finish up her daily emergency radiation but she is done on Wed. and thinks she's going right to her new house.

Today she told me that her plan was to rent a hospital bed and then whenever the rest of the furniture gets there, it gets there. But that is unrealistic because she needs 24/7 care (which she has been told by Brigham and by the rehab facility and which on some level she knows. I have yet to identify a service because I don't know when the house is going to be liveable and my mom keeps telling me she has a "longevity planner" but not giving me the contact information) and I doubt we're going to find someone who is willing to sit on a deck chair in an unfurnished house. I am tearing my hair out. I want her to live there. It's what she wants. But can we do this?

Seriously? Mom has stage IV with spinal metastases?

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