Background


I get about a dozen emails every week from people with a dying/dead parent, asking me for advice or just asking me to be a sounding board for them. Yesterday I received an email from someone who’s mother was just given a few weeks to live after recently finding out she had cancer. The writer asked me what I wish I would have asked my mom before she died.

A lot of what I would ask or do now is different from what I would have done at the time because I am now a mother and at the time I wasn’t even dating anyone (see how much happens in 3 years?) In retrospect, I would have asked her a lot of questions that would have made me feel stupid at the time, since they weren’t even in the near future, but I would have been happy to have the answers later. I don’t regret not asking her these questions for this precise reason – I wasn’t even able to see past the fact that she was dying to a time where I would be happy. Regardless, by the time we knew it was the end, she couldn’t talk anymore anyway, so none of these would have been an option.

I’d ask her about her pregnancies, and what it was like for her to be a mom for the first time (I am the eldest). And I’d ask her about her births and recoveries and how she got through everything. I’d ask her what challenges she came across with pregnancy and marriage and what she did to resolve them, and I’d ask her how can you love a tiny person so much and still have enough room to love another (we are three girls).

I’d ask her about my childhood, what kind of a kid I was like, what she would have done differently with us and what she would have done the same. I’d ask her about her wedding and what the planning was like, and what tips she may have for me and if she’d be OK with me wearing her wedding dress (which I did).

I’d ask her why my meatballs aren’t as delicious as hers and for her recipe for chili.

I’d ask her to reassure me that I will find someone who I would like to marry (and who’d like to marry me) and that I would be a great mom. And I’d ask for her to list the reasons since I wouldn’t believe her anyway.

I’d ask her to record a video of herself reading some stories for my future kids, like “Goodnight, Moon”, which my nephew and niece both loved so much, so they could somehow know her, even the puffy and weird version of her, though that may be painful to watch.

Most of all, I would ask her to hug me so I could sniff her and feel her touch. I would give almost anything just to feel her touch and smell her.

When I started “Daughter of Cancer,” the only purpose it held, as far as I was concerned, was an outlet for what I was feeling and couldn’t share with my friends and family. I felt like I was exploding inside and had to get things out, but did not want to burden anyone with my feelings (it’s just who I am).

What has happened over the past year has been nothing less than shocking to me; Turns out this blog has become a place for people who are going through what I am going through – or are about to, or already have – to see that there are other people experiencing the same exact feelings and pain that, with all good intentions, cannot be fathomed by someone “on the outside.”

I often receive comments and private emails from people who thank me for the blog. More often than that, I get emails from people who ask me how I can live without my mom, how I wake up every day, how I function. I received one such email this morning. Seeing as the one year anniversary of my mom’s death is coming up next week (according to the Hebrew calendar, 2 weeks later according to the regular one), this is a topic I’ve been reflecting on a lot lately. Below you will find the answer to this morning’s email (almost verbatim). I thought my readers may find it interesting and, perhaps, helpful.

Dear Reader,

Sunday will be the 1 year anniversary of my mom’s death (according to the Jewish calendar). My mom’s chemos didn’t help her – she was on 3 or 4 different types. What’s worse is that once she was deemed terminal (officially, seeing as glioblastoma is terminal cancer to begin with), the doctor whose study she was in became really rude. Like we don’t matter anymore since we’re no good for the study. When we called to ask what to do, he told us we aren’t his problem anymore.

As for how do I start each day without my mom? Shockingly, I do. I don’t know how. Before she died, and before she was terminal, and before she was even sick, I never thought I’d be able to survive not having my mom around. Not at an earlier time than I’d expect (old age).

But I do, somehow. I was very lucky in that I fell in love a month after she died. I honestly don’t know how I would have gone through it without him. I don’t mean that I would talk to him about stuff, because I wouldn’t. What I mean is that suddenly this amazing thing happened to me and I was distracted. My distraction clearly delayed my grief (sort of), but it made it come in bites that were easier to handle, I guess.

Regardless, my sisters have gotten through it, too. One is married with 2 kids, but the other isn’t, and she didn’t have anyone this year.

I always thought not having my mom would kill me. It hasn’t. I have no idea how. But it’s hard. Don’t think every day is a bright new challenge. I had a terrible day on Tuesday, one that even had me angry at The Boy, and we don’t fight. Everything was annoying me, and I couldn’t stop crying. It happens.

Before she died I would run away to cry privately, but I don’t control it anymore. I have given into it, and it actually helped. Not caring what people say. They get used to it. People who don’t know you probbaly won’t say anytihng anyway, and people who know you may, but probably won’t. If anyone asks, I say I’m sorry, I can’t control it anymore, it will pass, just ignore it. Just like I have told my coworker several times over the past few days.

My personal position was that I would never talk to anyone about how I was feeling and I would cry privately, but towards the end, when my mom couldn’t recognize me anymore and didn’t understand what was going on around her, I just couldn’t anymore. I lost control of my emotions. And it is still like that, though not as hard. And apparently it isn’t the end of the world.

I try to focus on events. I think of how long until X happens. For example, Sunday will be my mom’s memorial. Instead of focusing on that, I try to focus on the fact that my 1 year anniversary with The Boy will be a month later. I think of friends’ and family’s birthday parties, of trips or vacations I go on, on meetings that I will soon have with friends whom I haven’t seen in a while. I talk to my 4 year old nephew who always something hilarious to say, and I go to my ballet classes. They don’t make me as happy as they used to, but that’s OK, I still usually enjoy them. I think about the launch of the new website at work, and the family dinner we’ll be having on Friday. That’s how I get through the hard days.

Thankfully, the hard days don’t happen as often as they used to. And when they do, I just try to get through them without hurting the people who care about me. It’s all part of being the other type of cancer survivor.

“… And I’m getting it back on the road now, but I’m taking the long way around.” (From Taking the Long Way by the Dixie Chicks)

Today marks two years since my world turned upside down.

It’s been two years since my mother couldn’t feel a part of her face for a few minutes and went to the hospital.

It’s been two years since I found out who my friends are. Or, rather, who isn’t.

It’s been two years since my sister called me at 5:30 am when I was in Palo Alto for work to tell me I needed to come back, it’s cancer, and surgery was in a week.

It’s been two years since the term glioblastoma became so familiar.

It’s been two years since I have learned to sound like an episode of ER.

It’s been two years since I started having to hide myself even more than before.

It’s been two years since I became Talia 2.0.

It’s been two years since we celebrated my mother’s 55th birthday at the hospital. What are you supposed to say? Happy birthday?

Speaking of, tomorrow would have been her 57th birthday. Are we supposed to celebrate? Mourn? Ignore? Will April 22 ever look the same again?

Two years ago tonight, I was at dinner with 5 friends (3 of whom I am longer in touch with, and their absence is not felt in the least) when my dad called to say they were in the ER, but that everything was OK. I figured my mom had issues with her hand again – she had just had carpel tunnel surgery, and was having issues, so I figured it was related.

It was related, all right. She just didn’t have Carpel Tunnel Syndrome, but a brain tumor. She had been misdiagnosed (shocker).

I won’t write out the whole process since it is detailed in the background post, and, for now, I won’t be “releasing” any more information. But it got me thinking that the top of my world has come crashing down six times in the past two years.

The first time was with tumor #1, first discovery of the disease, where we were still very optomistic.

The second time was tumor #2, when we thought things were going well, and almost a year to the day after the initial tumor, another one popped up.

The third time was just a few weeks later, with tumor #3 that paralyzed my mother’s right side.

The fourth time was in December when she lost the ability to talk altogether.

The fifth time was at the end of January or the beginning of February (can’t remember) when she could no longer recognize us or understand what was going on around her.

The sixth and final time was March 3, when she died.

(Comic relief: Every time I typed “six” I accidentally typed “sux” – Freudian slip?)

These were also the six times I lost my mother.

The first time was when we found out she had terminal cancer.

The second time was when it came back a year later, so quickly. We knew, at this point, that it was aggressive, and longevity wasn’t so much an option anymore.

The third time was when she was paralyzed. Whatever hope she still possessed with tumor #2 was completely taken away by tumor #3, The Paralyzer. This is when depression really set in. And if you knew my mom, you knew she wasn’t a depressed person at all. So we had taken her lead. At least I did. This was also the beginning of the loss of her personal dignity, since she needed us to assist her in basic functions that most of us perform on our own. I don’t think I ever told anyone this, but I think it was harder on me than it was on her.

The fourth time was when she could no longer talk and could barely move. At this point, the doctors told us there was nothing more they could do and they were taking her off chemo. They said it was a matter of days to weeks. While devastating, this was actually a relief of sorts. I had spent so long dreading hearing those words, that when they finally came, the relief of not having to wait for them anymore spread over me, but not for very long. These were really hard days. I spent them at her apartment (I had just been laid off, so the timing was great), and seeing her not remember our names – and be completely aware of it – was probably one of the hardest things I have ever had to deal with.

The fifth time was when my mom didn’t know who I was anymore.

The sixth time was when my mom was no more.

I no longer feel the stress and anxiety that I felt before she died. I was feeling so heavy for so long, and I didn’t even know it until she had died and suddenly the weight had been lifted. Now that weight has been replaced with sadness.

Sadness is easier to deal with, I think, because you just cry and move on. I haven’t had a big cry since she died – I haven’t felt the need to. That’s not to say I haven’t cried, because I have.

A wise person was able to put my feelings into words a few days ago: I want the sadness to be over, but, on the other hand, I feel it’s too soon for it to go away.

I feel the same about these six anniversaries. Will I be “celebrating” them for long? Will I forget them? Or will they just stay with me forever?

Happy would-be 57th birthday, Mom.

I miss writing mom with a capital M.

P.S. If you haven’t yet answered my short poll, please let me know how you found out about Daughter of Cancer and how you keep updated. Thanks!

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.