February 2009

Yesterday I wrote a top 10 (that became 11) list of things I hate hearing. There is actually one more, but it deserves it’s own post.

The absolute worst thing anyone can say to me is “be strong” or “you are so strong.” I am not strong. The fact that I don’t break down at any given moment is not due to my “strength.” No one knows what’s going through my head, and what I’m thinking or feeling.

I’m not in denial in any way. I know what’s going on. But when tumor #2 happened, and especially #3 (The Paralyzer), I developed a mechanism that, to this day, makes me feel guilty. I basically remove myself from the situation and almost “pretend” that it’s not my mom that I’m looking at.

Sometimes I accidentally switch the off button, like last week, which caused me to cry for 4 days straight (to the point where I didn’t even go to my ballet and lyrical classes, and anyone who knows me knows that I don’t skip those EVER).

It’s a double-edged sword. Either I fall apart (read: not strong), or I pretend that what’s happening is unrelated to me (read: not strong, just chicken, with a dollop of guilt).

This is the only way I get through my days, and especially the hospital visits. Seeing what’s become of my mom, in no time, is too terrible to be able to deal with if I wouldn’t pretend. Especially since none of this should have been happening for at least another 30 years.

Silence does not equal strength. Silence is just silence, at least in my case.


In no particular order, the following is a top 10 list of things I HATE hearing. They don’t make me feel better, they only piss me off. Most of my friends already have this list memorized, though most of them don’t know this blog exists:

  1. You’re in my thoughts
  2. You’re in my prayers
  3. G-d is with you
  4. Really, anything involving G-d
  5. Everything will be OK (Yihiye Beseder)
  6. This too shall pass
  7. Everything happens for a reason
  8. Things get worse before they get better
  9. Cheer up/smile/anything along those lines (stop trying to make me feel better!)
  10. Go to your dance classes/go to a party/go out with friends/don’t stay home (I go out all the time, if I’m not in the mood, don’t try to make me.)
  11. Don’t stop telling me your problems because “they aren’t as bad as mine.” If I don’t want to hear your issues, I won’t answer your phone calls.

Update: Number 12 received its own post.

My mom stopped breathing about 3 weeks ago.

Apparently the law is that, while you can ask for an DNR for a family member (do no rescucitate – no life-saving measures such as CPR), you cannot ask to be denied treatment. I don’t know what the entire law is, maybe it’s because she has been unable to communicate in any way for weeks now and there was nothing written in a will, but even though there was NO reason to save her life, they did.

They gave her oxygen. I know it sounds so cruel. How can a daughter (and husband and parents) want her mother to suffer?

The alternative is more suffering. As you can read in my background post, there’s nothing left of my mom, but her body. There’s no way to save her, there’s no treatment to give her, they can just try to make her comfortable.

So instead of letting her die a couple weeks ago, now she has to have endless seizures (most of them small) that make her heart weaker and weaker and weaker until it gives out.

This is cruel and unusual punishment.

My mom couldn’t feel the side of her face for a couple minutes and went to the ER  in April 2007 on the evening before her 55th birthday. Several days later, she was diagnosed with glioblastoma,  a (terminal) form of brain cancer. My first thoughts were of Marnie Rose, a young pediatrician who I knew from Hillel in Houston who had died at 27 (she was on a reality series on ABC named Houston Medical while she was battling the disease) and Kim Perrot, the point guard for the Houston Comets who had died of brain cancer.

She had brain surgery almost immediately and began radiotherapy, and then a one year course of chemotherapy. During her 9th course, a second tumor was found.

All in all, she has had 2 brain surgeries, radiation therapy (several types), and 3 different types of chemo (including biological and chemical combinations), but they tumors kept coming back. In all “fairness,” the neuro-oncologist said that the surgeon can remove the ones he sees, but there’s no way to prevent new ones from coming. Not to mention the fact that, in this day and age, there’s no reason to hide anything, what with the Internet being at our fingertips.

It actually took me more than a year after her initial diagnosis to go online and check mortality rates. This was when the third tumor came, the one that paralyzed her right side. If you’re really lucky, you have 3 years. That’s if you are under 50, which she wasn’t, and there are no neurological side effects, which she already had. Basically it said the average is 7.5 months.

In December my mom’s condition took a sudden turn for the worse and she lost her ability to talk and move (though she got some movement back). We were told by the doctors that it was a matter of days to weeks. It has been just over 2 months now, and she’s been in a full care facility because we can’t take care of her ourselves anymore. She is mostly fed through an IV. She doesn’t recognize us and doesn’t understand anything that is said to her, which is probably a blessing at this point. She’s on morphine, so she’s out of it most of the time anyway.

Now we’re just waiting for her to die.

It can happen one of two ways:

1) The tumors and edemas will grow until one of them make a hole so big that another one will drop into her brainstem and kill her instantaneously (this is the one we’re “hoping” for)

2) She will have many seizures, each of which will weaken her heart until it gives out. Seeing as she’s so young (56), she has an incredibly strong heart, so this means a lot of suffering (which she is going through).

Meanwhile we are trying to pretend life is normal and go on with our daily routines, whatever those are.

Update: My mother has passed away.