How Not to Cry

Yes, I spoke at her funeral. I wrote a text which I practiced at home and then read in front of the hundreds of people there. I looked away from the people and instead focused on her photo. I was speaking to her, after all, so I spoke to the huge picture of her smiling 4 year old face on the altar, next to the flowers and teddy bears, balloons and toys surrounding the wooden box containing her ashes.

I didn’t cry. Not even a bit.

And people said I was strong. Some people hinted that there was something abnormal about me. Emotionless? My husband would probably laugh at that. Martin has to preview movies and tv shows before I watch them in case they are too sad or upsetting. I frequently am told “Oh I found a great new TV show but you can’t watch it.” We have a perfect way of sharing tasks in our home in fact. In addition to checking whether movies and tv shows are Nicole-proof, Martin also buys all the groceries, puts gas in both our cars, is in charge of the wine-supply (important!), and has developed an elaborate document scanning system to minimize useless paperwork… (hey wait a minute, what are all those papers piled around his computer over there?) I cook the food he buys, drive the cars until they are wheezing forward on fumes alone, drink the wine, and open the mail. Sounds fair enough, right?

 

My point is, I am anything but emotionless. Inside, my tears were like Niagara Falls at her funeral. But I kept it in, not out of a lack of feeling.

No, it’s just that I wasn’t there for me. I was there to support her family, and in that role, the best thing I could do for them was to be strong and hold it all in. So, I had to make sure I didn’t cry. How? It’s complicated. A delicate balance between extreme concentration on what I’m doing while at the same time avoiding any thoughts about what I am doing. So if you noticed I wasn’t really very social on that day it’s because my brain was too busy doing cartwheels. Talking would potentially have upset the delicate balance.

Now, time has passed. I’ve been to the grave a few times. I’ve re-lit the candles and swept the snow off the teddy bears and stood looking at the ground. She’s not really there. I don’t feel her presence, not like the way I do when I’m driving in the car and hear one of the songs she liked so much. The grave is a place on this earth for a person who is no longer on this earth. The grave is for us. So I try to make it look nice. But I don’t think Zoé would stay there long, anyway, there are not enough toys. The other day there was quite a bit of snow covering everything, she would have liked that I think. I bet she would have laughed hysterically and run around getting cold and covered in snow and not cared at all about the consequences.

I forgot my gloves and swept the snow off all the teddy bears and flowers with my hands and felt my fingers freeze but I didn’t notice they hurt till I was back in the car later and they started to thaw. So maybe I’m not emotionless but feelingless? Numb?

No, that’s not it. I just don’t show it. In fact, I feel a lot of sadness and anger at the thought that Zoé died . Yes, there, I said it. I know we’re supposed to say things like Zoé “passed away” or “left us” or “went to a better place”.  Does it make it feel less harsh, less upsetting, to not use the word “died”? But that’s what happened. She died and it’s totally, completely unfair and it hurts. It’s just a word. Whether you want to say passed away or died, it comes down to the same thing. She died and we didn’t so we’re left here with her teddy bears and toys. And she’s somewhere else, probably having loads of fun because she just was not the type of person who sat around thinking about the difference between the words “died” and “passed away” and whether or not you should or shouldn’t cry at funerals. I bet if Zoé had lived she would have been the type of adult who never put gas in her car and drove on fumes, because she just had too many other fun things to do to stop. And maybe that’s why it feels so unfair, because we don’t get to share those moments with her. I would love to have had the chance to run out of gas with adult Zoé.

But I guess there is something to be learned from all this (other than the sudden realization that came over me when I wrote that last sentence that maybe some people are just born without the ability to notice the car gas level, which means that running out of gas is actually not my fault but a true genetic predisposition). There must be a lesson in all this because I don’t always feel sad and angry, often I’m happy when I think about Zoé, because she existed, and because through her I made some new friends. Even though there is tragedy in the story, there is also happiness.

You could say the lesson is to live in the moment and treasure all the time you have together because you never know when it could end. And that would be true. But I’ve tried that, and it takes a huge amount of energy to always live in the present moment. And it’s just not always possible because sometimes you need to plan for the future. For one thing, in our home, if I stopped planning for the future and chose to live in the moment we would be eating a lot of raw meat. Many children in this home would be wearing clothes that are dirty and several sizes too small. My older boys would have to wear shoes that have holes in the front for their toes to poke through.  I would not be able to see my husband at his computer behind the piles of paper and things surrounding him. (hey wait a minute… it’s already like that!) And of course if I didn’t think of the future ever I would probably be sitting here pregnant with my 25th child. (Oh I almost had a little heart attack just at the thought.)

So no, I just can’t live in the moment all the time. And I do appreciate all the time I have with all the people I care about, but sometimes I also appreciate being alone.

So what the lesson? Zoé, are you listening here? Any advice? (I know it’s an ironic thing to write because not only was Zoé not able to read yet but she didn’t speak a word of English. But I like to think that when she left her body here, she became a multi-lingual intellectual. I still think she’s running out of gas in her car up there though. Some things can’t change.)

Ah, the answer does come to me. A thought sent from “above” or just the logical answer to my question? Who knows.

Fun. Zoé always chose fun. That’s the lesson. photo (88)

 

They say life is not measured by the number of breaths you take but by the number of moments that take your breath away. So maybe I didn’t get to drive around with Zoé in a car with no gas (why do I envision us like Thelma and Louise in that description?) But I did have some fun with her, I am even proud to say she once insisted on coming over to my place to be babysat when her mom had an appointment. And we did have fun.

In the end, you probably only regret the things you chose not to do, not the things you did. So while we’re here let’s live like Zoé and have fun.

So when I’m gone, I hope someone passes by my grave and keeps it pretty too. But I won’t be there. Not enough toys.

Advice to the Newbies

 

newbie

Don’t you wish someone had been there at the beginning to give you some straightforward advice on what you were going to be dealing with ? On what to do? What to expect? Kind of a “what to expect when you’re expecting cancer” kind of book? Well, here is my list of pearls of wisdom, and I call on all my other cancer friends out there to add to it, share their experience to help the newbies entering this world… Please add your comments at the end.

 

  1. First, cry. Then get up, and get strong. Being strong might mean you just get through the day. You have no other choice. Get to work on your new life goal: Cancer Fighter.
  2. Accept any help you are offered (if it truly helps). The help must be no-strings-attached and guilt free.
  3. Speak up. Ask questions. If you don’t understand, ask again. Don’t be afraid of doctors, nurses, technicians, anesthesiologists or hospital clowns. They are there to try and cure this cancer. You deserve to know what’s going on, and to have an active role in it.
  4. Get copies of all the paperwork. Every scan, every test result, every protocol. Write down what your doctor says.
  5. Cry again. Then get back on your feet, get strong, and get back to work.
  6. Not everyone is like me, but I needed to understand as much as possible about the cancer we were dealing with. I wanted to know the treatment plan in detail, the drug names, the side effects.
  7. Accept that your schedule has now become completely unpredictable. This is one of the hardest things to deal with at first. Plans will change. A lot. The treatment dates will change. Your other appointments will have to change to fit. Very few things will remain on a predictable course the way they did before. Go with the flow.  This is a lot easier said than done, I know, but what I’m getting at is: you don’t have a choice. So let go of worrying about controlling the plan.
  8. Take a good long look at your life, and start to eliminate all the extra negatives that are dragging you down. Negative people, negative situations, negative habits. You no longer have any time for this.
  9. Replace the negatives with positives. Encourage positive friendships, people who make you feel good about life. Participate in uplifting activities, from exercise to talking on the phone with a good friend, to girl’s night out, to a romantic dinner for two.
  10. Learn to notice the difference between what matters and what doesn’t. For real. Like, before all this: it rains as you run for the bus and you miss it, and show up at work late with ridiculous hair. Versus now: it rains as you head to the hospital for a scan that will tell you whether the treatment is working or not. The last white blood cell count report was ridiculously low. There are 20 steps from the parking lot to the hospital door and you’ve forgotten an umbrella. Hair is not an issue, as it is non-existent. A man offers to walk with you under his umbrella. This matters.
  11. You guessed it, cry again.  You’re entitled, and if you hold it in, it will be the volcano that explodes when least expected. Then, get up, get strong… You know the routine.
  12. During the hardest moments of treatment, take it one day at a time. This means that you actually just focus on what is going on that day. Take it one hour at a time if necessary. Don’t plan too much for next Friday when you’re still trying to make it through today.
  13. Make a very, very short list of priorities. Something like, rest, nutrition, family, and then, work (yes, you still need financial stability, especially now. But work will come after health for quite a while, and rightly so.)
  14. Once you have the time and energy, make sure you have at least one activity that has nothing to do with cancer. You can’t live in that world all the time. I don’t mean you have to join a weekly Tae Kwon Do class or start Norwegian language lessons, just one thing, on a regular basis, that has nothing to do with cancer.
  15. Don’t dwell too much on how people (friends and family especially) are behaving. You will be surprised at who comes through for you, and who doesn’t. People will show up to help when you had no expectations of them. Others will disappear, much to your surprise and chagrin. Don’t hold it against them too much. People all react in different ways to difficult life events.
  16. Celebrate every victory.
  17. This time, instead of crying, laugh. Laugh and laugh, until you cry. Preferably not alone, as by now I hope you have learned to surround yourself with positive people. Then, get up, get strong…

Feelings

How are you feeling?

I get that question a lot. How do you feel? How are you doing? How are you holding up?

It’s comforting to know that people care. But it’s also so hard to answer. The emotional range inside me can be quite vast. Sometimes I’m not even sure how I feel.

I don’t think I will ever go back to how I felt “before”. That’s because even when things are looking really good for Elliot, really quite optimistic, there is one feeling I can’t seem to get back: feeling carefree. That feeling has left the building.

There’s one feeling that is constant, that I think many cancer world inhabitants can relate to. Sometimes just a faint whisper of it in the background of your mind, other times a huge roar overwhelming you. I can’t quite name it, it’s not something I felt before this. But the best description is that’s it’s a cross between anger and fear. Those two feelings combine to make one overpowering feeling… Shall we call it Fanger?

And it’s not just plain anger and fear, but outright rage and overwhelming terror, all rolled into one emotion.  That’s Fanger.

It’s what you feel when you think about the Whys. And the What Ifs. It goes quite well with a nice serving of the phrase “It’s not fair.” (Add whatever extra words in that sentence you deem necessary).

Another strange feeling I have felt since beginning this cancer journey is called Wope. It’s a combination of Hope and Worry. It feels like juggling ten sharp swords while riding a unicycle on a tightrope which is maybe hanging over a net… Nobody really wants to be around you when you’re feeling Wope so it’s best to keep it to yourself.

Oh and then there’s that lovely feeling Anxhaustion, the overwhelming anxiety mixed up with absolute exhaustion, which is encountered usually about three hours before you can possibly go to bed, and often being especially high on the days before a scan or MRI.  Anyone messes with a person feeling Anxhaustion is likely to get their head bit off.

Oh but wait, one of my favorites is Imdreadcipation, isn’t it yours too? That wonderful cocktail of impatience, dread and anticipation you feel while waiting for the test results, waiting to see the oncologist, waiting to get the chemo, waiting to have a scan, waiting, waiting, waiting…

Then again there’s that occasional bout of Nervanity, that combo of nervousness and insanity that often strikes suddenly, like right after your child has knocked over the tray of medicine in his struggle to get away from the nurse and you have to start the whole procedure over, and you are overcome with completely inappropriate laughter.

And let’s not forget Sorryuckyourself, often felt when people stare at you when you’re out in public. I’ve felt it when stopping quickly for groceries at the store after a chemo day and Elliot has an “I want a toy” tantrum. It’s a mix of feeling sorry for yourself and feeling like telling people exactly what they can do with their parenting advice.

But the very best, I guess, is Grelief, the mix of relief when you finally get good results and grief at the knowledge that your life will never be the same again.