Monthly Archives: September 2011

Helpless and Frustrated

Looks like this might turn into a “My mom has cancer and this is how my life sucks because of it” blog.

So today I walked into the house after meeting the girls at the bus stop at the end of the day to hear a message being left on the house answering machine (yes, we still have one of those!). I heard my mother’s name and was able to grab it in time. It was my mother’s surgeon’s office calling me, because the oxygen company had been to her house earlier and found her in a state of “extreme confusion” and could not even provide the name or number of someone to call. They could tell I lived a few hours away but wondered if there was someone who could check on her.

Oh man….

I called the one friend of hers I have contact information for. Then I called my mom. She didn’t seem confused as much as she sounded frustrated and helpless. She’d had her first chemotherapy treatment earlier in the week and had been feeling relatively OK from that….except for having her oxygen levels quadrupled, morphine based pain pills and, oh yeah, the accidents she reports having “everywhere”.

She was upset that the oxygen man was intimidating her and arguing with her over her oxygen level. She said he wasn’t showing her any respect. I suspect that, while my mom may have in fact been at least partially confused about any number of things, mostly she was in a high state of anxiety which is what really alarmed the oxygen guy.

At one point in the conversation she said, “I know I can’t afford it, but part of me thinks I should just check myself into a nursing home.” This from the woman who has been telling me for YEARS that if she ever needs to go to a nursing home to give her a bottle of pills and a bottle of scotch and she’ll take care of the rest.

So, I need to go check on her again. I cannot keep going to see her every weekend. And yet, I don’t know what to do.

A Mother Tale

One Monday morning in late July I received a call from my mother’s cell phone on my cell phone. This alarmed me for two-and-a-half reasons. One, my mother and I have a standing phone date for Sunday mornings. We rarely talk to one another on a different day. Two, my mother rarely uses her cell phone. And the half, she rarely calls my cell phone, since she is afraid she will reach me when I’m driving. (Lots of “rarely” in that paragraph!)

My alarm only increased when I actually answered the call and she said she was calling me from the Emergency Room at the hospital (she lives 2 hours away from me). She had been experiencing chest pains and called 911. She said she was feeling much better now, and they hadn’t found anything wrong with her heart, but were going to keep her overnight.

In the course of checking her chest via an x-ray, MRI or CAT scan (she used all 3 terms in reporting to me, so I’m not sure which one(s) they actually did), they saw some spots on her lungs that concerned them and that they needed to test further. “Spots on the lung” is a bad term in our family – my sister had cancer in her foot that metastasized to her lungs. To us this signals the beginning of the end, and even my mom said it was like going through that all over again.

A biopsy was ordered. She was petrified going in for the outpatient procedure, and was immeasurably relieved when it turned out to be not such a big deal. Her regular doctor met with her to review the results several days later, which were “inconclusive”, but he said, and I’m quoting her quoting him here, “With your history of smoking I would suspect we’re looking at lung cancer.”

My mother, who smoked for 40-something years and quit maybe 10 years ago, was incensed at this comment. She felt like he was “kicking her when she was down” and that he shouldn’t be bringing up the past, since what’s done is done. I tend to take a more pragmatic view – he was weighing the facts here (she smoked for a long time) and giving his professional opinion.

They set her up with an oncologist who ordered more tests: PET scan, mediastinoscopy, etc.

My mom called me the day before the mediastinoscopy procedure, which is a fancy word for a lung biopsy. She had labored breathing and was having trouble catching her breath talking to me. She was afraid she wouldn’t make it through the procedure (which is done on an outpatient basis) and that she was deteriorating so fast she thought she’d be gone by Halloween. The doctors have been trying to get her to go on oxygen at home because her breathing is so bad, but she’s been resisting because she’s afraid it will make her home bound. During that same conversation she asked me to come to her appointment, on a Thursday.

Quick little aside here: I live 2 hours away, work full time, and am sole parent to 2 young children. Finding out on a Sunday that I am wanted at an appointment on a Thursday sent me into stress overload. It wasn’t that I didn’t want to go, it was the logistics involved in getting me there. End of aside.

She called me Monday evening after the procedure. She sounded so much better than she had the day before, and had agreed to be set up with oxygen at home. “It really makes a difference!” she proclaimed.


Fast forward three days to Thursday morning. I dropped my girls off at their school’s breakfast program so I could leave a few minutes earlier for my two hour drive. I arrived at my mom’s house to a sign on her door saying “NO SMOKING! Oxygen in use!” Maybe this is a law to post such a sign? To my knowledge my mother does not receive visitors who smoke, and certainly not in her house anyway.

She had a list of things for me to do, so we got right to it. I changed her sheets, sorted towels, pulled out hard to reach items from her hard to reach pantry and did a little work in her yard. She kept trying to help me, but with her limited strength, mobility and the oxygen cord in the way, I had to keep reminding her to relax and let me do it all myself. Before long it was time for us to eat lunch before our outside-the-house activities. She had a coupon for a little place on a marina so we headed off there using her portable oxygen machine which plugs right into my car charger.

At lunch we had some tough talks. I’d done plenty of research based on what her doctor had told me when he called after her procedure on Monday. She is also refusing to tell her sister about any of this, and asked me not to as well…..except she asked me after I’d already told her. So her sister (who she hasn’t spoken to in several months) and I are keeping up a charade for now. So far I have been unsuccessful in convincing my mother to tell her sister, that this might even remotely be the right thing to do. More on this another time.

So if you’re still reading I’ve realized this is very long. Sorry about that Chief, but I want to get out everything up till the present. Keep reading or not, I’m going to keep writing.

At the oncologist’s office my mom started to get very anxious. She’s a pretty anxious person anyway, but add the stress of everything going on and her oxygen levels dropped and her pain increased. She was having trouble forming thoughts and asking questions, understanding the answers.

My mom has Stage 4 Non Small Cell Lung Cancer. Her doctor showed us one of her scans. You can see the tumors spread all over both lungs. No wonder she can hardly catch a breath.

The treatment protocol is chemotherapy. The goal is palliative, not a cure or even remission. Keeping her as comfortable as possible, basically. I asked the doctor how much time we were talking about both with and without treatment. He could only speak in terms of medians, of course. No one can say how any given individual will respond to treatment or not. So with those disclaimers out of the way, he told us that without treatment we are looking at 12 months, and with treatment we are adding an extra 2 months. Two months?!?!? Did he really say MONTHS??? I was expecting to hear years to which I would wholeheartedly agree that treatment is necessary and worth it. For two months? At what cost to quality of life?

This is all my mom’s decision, and I support whatever choice she makes. For me, I would really have to look hard at what treatment would do to my body, my way of life and whether that is how I want to spend the time I have left.

My mother has, so far, elected to receive treatment. She was originally scheduled for her first chemotherapy treatment today, but it has been postponed till next week after she has had a chance to see another doctor for a second opinion. Meanwhile, she sounds worse every time I talk to her. She cannot catch her breath on the phone, is very anxious, depressed and helpless. All of which is understandable to a large extent.

I am my mother’s only living child. Much of her care is my responsibility, and yet due to other responsibilities I have, I cannot be there for a lot of this. I feel stressed and helpless.

My sister died of cancer as a teen. My father died of cancer at a young 62. My mother will likely die of cancer in her early 70’s. Which kind of cancer is coming for me?

Cancer sucks. That is all (for now).