Living with Leukemia part 8: The Ugly Truth

The thing about cancer is that it completely changes your life, whether you’re the one to have it or someone close to you. What’s surprising is the extent to which it changes you, I can honestly say that I’m a completely different person now than I was two years ago, and I have no idea whether I will ever go back to being the person that I was then. Probably not. Another surprising thing is that, at least in my case, most of the changes aren’t positive, I truly wish I hadn’t become this way.

I used to be pretty judgmental, motherhood took care of some of that attitude, and then cancer took care of the rest, so you won’t find me judging as readily anymore. At the beginning of this whole cancer debacle I was talking to my therapist and telling her I was upset with myself cause I felt like I wasn’t doing enough, and that it bothered me how often people would come up to me and say I was so strong, and I was dealing with this so well and what with a new baby and all, and my answer was always, well, what the hell else am I supposed to do? And my therapist said that I’d be surprised at how many people leave when they find themselves in my situation. 

Obviously, my initial reaction was disbelief, I mean, really leaving a loved one who’s just been diagnosed with leukemia? Who does that? What sort of horrible human being abandons another in a time of need? And then you start hearing things, because you start paying attention, and you realized that you’re surrounded by “people who leave”, the husband who runs off never to be heard from again when his wife is diagnosed with breast cancer, the girlfriend who breaks off the engagement… there are so many, more than one can even imagine. I was appalled, who does such a horrible thing, I’d think, why would you react like that, how can you leave?

They say you shouldn’t judge until you’ve walked a mile in another man’s shoes, right? Well, now I’ve walked that mile, and I’m not so quick to judge. Cancer changes things, a lot. It’s a long, sad and sorry process with no guarantee of anything at the end. There are days, there are many days, when I wish I could be one of those people who leave. Have I shocked you?

Cancer changes things. I love my husband, I always will, he’s the father of my children, but we’re barely husband and wife anymore. We live our lives beside each other, but not together anymore, and we have no energy and no hope to look to the future anymore. So, yeah, the truth is sometimes I wish I could leave because I’ve realized that leaving would be so much easier. 

A few weeks ago, at my Mom’s wedding, one of my cousins who I hadn’t seen in years, said to me that I was the column of the family, always taking care of things, always doing what I’m supposed to. How sad is that? But, uncomfortably true. I need to take care of things, make them work, make them right. I’m not a person who leaves, but god do I wish I was.

I got an email a few weeks ago from a girl who reads this blog, I have yet to find the words to answer her. She finds herself in a situation similar to mine, which in a way was comforting to me because it made me feel much less lonely; now I’m not going to get all up in her business here because it’s not my place, but her email got me thinking (among many, many things) this: her boyfriend has leukemia with a very similar path to my husband’s but the thing is, they hadn’t been together very long when this all started for them, they’d only recently moved in together… and lately all I want to say to her with all the strength in my body is get out, get out while you still can. I can’t even imagine facing this whole, long, terrible ordeal without the strength of years together to help you through. I’m barely making it and I’ve been with the husband for twelve years, we have two kids, we stood up in front of church and state and swore to stay together in sickness and in health. And most of the time I feel like I’m a strong wind away from it all falling apart. 

But the truth is, I don’t think she’s one of the people who leave either.

I realize there’s no limitation period for leaving, one can up and go at any time, but there are people who can and people who can’t. Sometimes I try and look to the future and it depresses me to no end, because this illness is one step forward two steps back the whole way. Last year I used to think in terms of when the husband gets better, when we’ll get back to normal, when we’ll be able to do this or that, this year, after the second transplant, I cautiously thought if we get back to normal, but now, now I have no hope. Nothing specific has happened, his blood work is good, but he still feels pretty consistently like shit. And let me tell you, a person who feels like shit all the time tends to be an asshole most of the time. Through no fault of his, let’s be clear, but still it’s a normal and consistent reaction.

And now before you judge me, think, seriously think about living with someone who feels ill most of the time, who can’t eat because most foods and smells disgust him and you’re the one cooking, who acts normally one minute and then yells at you the next because he’s trying to act normal but snaps because he’s just uncomfortable all the time, but you’re the one getting snapped at, who always shuts you down when you suggest something because his initial reaction to everything is negative. Of course I understand that he’s like this because he feels like crap ALL THE TIME. I get it. And I also realize that I can’t really know how he feels, because, well, I’m not in his shoes, and I don’t want to be, I thank God every day that I’m not. I get that it’s not his fault. I get that he’s struggling more than I am. I get it. My brain understands all of it, I swear, but my heart is tired and sad and lonely. Cancer changes things more than I thought possible, and now I’ve found myself waking up in a panic at night wondering if things will ever go back, if they will ever get better. And that’s why I wish I was one of the people who leave. Because if you leave you may well feel guilty and ashamed but you’re living your life, you’re working towards something, you’ve got a future to build and at this point I honestly can’t say which is the better trade off.

The point is moot, of course, cause I can’t leave. I don’t know if it’s genetic wiring, if it’s an overwhelming sense of duty, if it’s love, but for now leaving is not an option for me, but let’s not judge too harshly the people who can and do leave. Having cancer is terrible, it’s undeniably worst for the person who has it than for anyone else around them, but being the person taking care of things, picking up the slack, being the sounding board, the shoulder to cry on and the punching bag isn’t exactly a walk in the park either. Being the person next to someone who is fighting cancer is sad, and frustrating, and exasperating, and tiring, and it’s very, very lonely. Cancer changes everything, and that, my friends, is the ugly truth.




I'm linking up today with Shell at Things I Can't Say.

Right here, right now

I’ve kind of been having a hard time writing lately, I have many posts in the making and I can’t seem to finish any of them. My head is all over the place and it’s making me even less productive than usual.

I’ve been in the throes of a stomach virus in the past few days, so I’m quite possibly dehydrated and delusional (please keep this in mind as you read this) anyway, today as I was driving somewhere to do something positively vital (or something to that effect) I started thinking that we live too long nowadays.

Seriously, for thousands of years we were old at 40 or 50, if we were even so lucky as to get that far. Nowadays we don’t even start really living until then. We are too old. Our best years are over before we’ve even lived a third of our lives. (Obviously this thought process managed to spiral completely out of control). All the things we dream of when we’re young, we’ve done or likely won’t get done by the time we’re only halfway through our lives (if that, much sooner in my opinion) so what have we got left?

I’ve reached all my major milestones, I went to University, got my first (and then second, third and fourth) job, I got engaged (!), then married (!!), then I had children (!!!) and now… well now I get to raise them and look forward to all of their milestones, but it’s not really the same is it? Sometimes it feels like the long walk towards death has started, and every minute that passes I’m just walking faster.

This is just a recap  of what my brain was flinging at me this morning. I practically had a panic attack in the car. I mean, seriously, at death’s door??

But in a way it’s true, at least for me, I’m a goal-oriented person, most of the time if I’m doing something I’m already planning the next step. And now I’ve started thinking that maybe that’s not such a good thing, not only because I have no clearly defined “next” right now, but also because if I spend my entire life thinking five steps ahead at what comes next, when do I actually concentrate on what’s going on right this minute.

I guess what I realized today (and yes, I see now that it’s obvious) is that life isn’t a series of checks to get off my to do list. 

So as of now I’m going to stop worrying about what the hell I’m going to do in the future, when we’re going to buy a house, when I’m going back to work, when this or that or the other happens because things are going to happen either way and thinking ahead does nothing but give me more time to worry or obsess. 

Or that’s my lofty goal for the month anyway. Although, I wonder… is it even possible to change our way of thinking so radically. I mean can a planner, an obsess-er and a think ahead-er really turn into a live-in-the-present-moment kind of person?

And this is the point when I start obsessing again. Will this work? What can I do to make it work? Here let me get out a pen and plan this out…. How does one stop. And. Just. Relax?

I took yoga for many years, off and on, and I loathed the meditation part of the lesson, because I simply cannot make my mind shut up and just “om” already. I don’t know how to do quiet, peaceful presence, I don’t know how to shut out thought. I mean, if I have a negative thought I know how to replace it with another more positive thought to get myself out of a funk (except for this morning, apparently), but to simply still my thoughts… impossible. So how does one live in the moment?

Cause sometimes I get the feeling that my life is passing me by, I’m living it on fast forward, and I’d just like to be present right here and now for a while. How hard can it be? Any suggestions?

p.s. and when I say living on fast-forward I don’t mean that I have to much to do, quite the opposite, my head is so all over the place I can’t seem to get anything done.

Lucky in love

My Mom’s a major romantic. Really, a first class, professional romantic.

This veil is actually a Spanish Mantilla - it was handmade by some of the last women alive that still hand embroider on silk, it was a literal work of art and I hope my daughter decides to wear it if she chooses to marry.

She dried and kept the first flowers the Husband ever sent me from Italy to Houston, just in case I wanted them one day. She kept our locks of hair, our cutest baby outfits, random little notes and drawings from our childhood and from my dad. She made my wedding day extra special, going out of her way to help me realize all my dreams. As I said, she’s a romantic. My dad? Not so much.

These pictures are in no way related to the text, other than they're from my Mom's wedding day and my kids are adorable.

When my parents met it was love at first sight, and despite the many, many years difference between them, their romance progressed at lighting speed. Before they even blinked my Mom had moved from Brazil to Italy and was pregnant with me. My Dad, at the time, was going through (or had just gone through – I’m not exactly sure of the exact timeline) a complicated divorce in addition to which the ludicrous Italian Catholic-based divorce laws said, at the time, that a couple had to be legally separated for at least 5 years before being granted a divorce (nowadays it’s three years. Yes, three years). My dad, who was not even remotely a “grey area” type of guy renounced the entire institution of marriage swearing up, down and around that he would never, ever get married ever again. My dewy-eyed, barely twenty year-old mother, agreed with him because, well, what else was she going to do?

This one here probably wouldn't have been as complacent as her Nana.

Fast-forward a few years and my dad decides to move the entire fam across the pond to seek new fortunes in the new world. Alas, the stringent American Immigration laws would not extend his visa to his “life partner”, it was a get married or get out of town ultimatum. So they got married. In Vegas. My Dad barely made the effort to comb his hair before stepping into the chapel. Basically, not what a romantic girl dreams of when imagining her wedding day. Still, my Mom made the best of it, she dried and kept the half-assed bouquet he bought her, and framed the few photographs.

Let me be clear, my Dad loved my Mom more than life itself, but he was no romantic.

Years later, my Mother, having finally found her voice, issued her own ultimatum: give me a real wedding or suffer very dire consequences. My Dad agreed, bought her an actual engagement ring, and then sort of forgot about the whole thing (as men are wont to do).  Obviously there was no sense of urgency, they’d already been together for thirty plus years, one year more or less wasn’t going to change a thing… except my Dad died. So it appeared my Mom was never going to get the wedding she had always dreamt of.

Some people, though, are really lucky in love. A few years after my Dad’s passing, and much to her children and step children’s collective relief she fell in love again with a great guy. Don’t get me wrong, he will never replace my Dad (to me, lest you think me disloyal) but he’s exactly who my Mom needed and wanted at this time in her life. He’s the bee’s knees.

The Groom's cake - I didn't manage to get in there and snap a picture before they started cutting.

I already mentioned how cool it was of him to get married in a foreign country, in a foreign language, in a foreign church (i.e. in Rome, in Italian and in the Catholic church) – well, cool and a little reckless as he, and more than half of the guests, had no earthly idea what in the heck was going on – but it’s not just that. He gave my Mom her dream. I’m pretty sure that his entire involvement in this whole affair was something along the lines of “this is your suit, show up at this church”; my Mom, on the other hand, organized everything with such minute attention to detail that I almost didn’t recognize her.

She got her dream wedding, and her dream husband (twice in one lifetime, I’m telling you lucky in love), and for a romantic such as she there really isn’t anything to top that. Because, you know, it’s not just about the wedding itself, it’s about a sense of fulfillment, of accomplishment, sometimes we need to see our dreams come true, whatever these may be. And I, for one, was over the moon to see my Mom live her dream, after all, how often do we get to do that, it’s usually always the other way around.

Today I’m linking up with Heather over at Life made lovely, for the woman who made my life lovely every day. 

Birthday Coconut Cake with Lemon Cream Cheese Frosting

Monday was my birthday. I’ve been a bit melancholy lately so I haven’t been in much of a celebratory mood, but I’d been thinking of making a coconut cake or pie for a while so I took the bull by the horns so to speak. Surprisingly, I had a really hard time finding a recipe for coconut cake that actually used coconut in the cake itself rather than just the frosting. I ended up mashing together two separate recipes (this one and that one) and I’m pretty happy with the result, although next time I won’t be lazy and I’ll actually make a real seven-minute frosting to go with it.

I'm very happy with my cake!

It's always best to get help when blowing out the candles.

A bonus: the cake itself is dairy-free, cause it uses coconut oil rather than butter. I haven’t found a really great dairy-free frosting recipe, but don’t despair I’m still researching!

For the cake:

This is what you need:

6 eggs

300 grams (1 ½ cups) coconut milk

45 grams (7 Tbsp.) grated coconut

200 grams (1 cup) raw cane sugar

1 gram (1/8 tsp.) salt

16 grams (4 tsp.) baking powder

200 grams (1 cup) coconut oil, melted

250 grams (2 cups) flour – I like to mix and match flours so this time I used 75grams whole wheat flour, 60 grams spelt flour and 115 grams regular cake flour, this combination turned out great, the cake was soft and fluffy and had pretty beigish color that I prefer to just plain white.

This is what you do:

Preheat oven to 175°C (350°F). Grease two 9-inch cake pans with some coconut oil – or get a really short person to do it for you.

First things first: stir the grated coconut into the coconut milk and let it soak while you get everything else ready.

Separate the egg whites from the yolks and beat egg whites until stiff (like whipped cream).

Put the yolks in a larger bowl and add the sugar, salt, and coconut oil mine was a bit hard cause it’s starting to get chilly here so I put it in the microwave on high for ten seconds, it wasn’t actually melted but it was soft, I didn’t want to add warm coconut oil to the eggs lest they start cooking. 

Beat everything together till smooth.

Stir the baking powder into the flour mixture, and add to yolk mixture. Add the coconut milk with the shredded coconut. I like to alternate wet and dry ingredients since most recipes ask you to do this, so I alternated the flour and the coconut milk but not sure that it’s actually necessary here. Beat until well combined and remember to scrape down the sides and bottom well while mixing.

Gently fold your egg whites into the batter and pour the batter evenly into your pans. Bake 30 minutes, or until a toothpick inserted in the center comes out clean.

Let the cakes cool well before icing.

For the lemon cream cheese frosting:

This is what you need:

150 – 160 grams Philadelphia cream cheese

120 grams (1 packet – 1 cup) confectioner’s sugar

1 large lemon

2 TBS coconut milk

This is what you do:

Beat the cream cheese until well combined and fluffy

Add the powdered sugar, lemon zest, lemon juice and coconut milk. Mix well, but don’t overbeat or it’ll get runny. Spread a thin layer of the filling on top of each cake.

At this point you can make 7 minute frosting (I don’t have a recipe up, but it’s very basic and easy to find) and use that and some grated coconut to make it look really awesome.

I wanted something lighter so I just lightly frosted with the lemon cream cheese, doesn’t look as good, but tastes great!

It helps to have eager dishwashers afterwards:

Of course, you must try it right away: 

Happily it was pronounced very good:

And then of course presents were opened:

Linking up with Alli-n-son today for Sweet tooth friday!

Virtual Coffee {25}

Hello dear friends and welcome to coffee. We’ll be enjoying a nice Coconut Cake with Lemon Cream Cheese Frosting today with our coffee, as yesterday was my birthday and I finally had an excuse to make this cake I’d been wanting to try for awhile now. It came out really well, if I do say so myself (recipe scheduled for Thursday).

If we were really having coffee today, I’d tell you I’m still recuperating after my Mom’s wedding weekend in Rome. It was very emotional and beautiful and exciting to be there, but the trip is L O N G! I’ve got a wedding recap post in the making, but I just wanted to start sharing a few pictures with you:

This is my mother, ain't she purdy?!

Her veil was a literal work of art.

The Happy Couple
(please excuse poor quality of picture, not their fault!)

I’d tell you I was amazed at the kiddos, cause they were exceedingly well behaved and patient. They sat relatively calmly through a 12 hour car trip, normally we would make the drive in about 6 hours, but what with the new, more stringent speed limits and the fact that you can’t keep kids strapped in their carseats for that long without a break, it turned into an odyssey. They were wonderful at both the wedding and the dinner the next night, they were friendly and well-behaved and great entertainment both during and after the service, they even managed to walk down the aisle (with me).

It’s funny to see how oblivious children are in what we consider formal situations. During the wedding mass the girl kept calling “Nana” and wondering why her Nana wasn’t going to play with her (her other grandma eventually took her outside for a much needed break), the boy kept asking me in a stage whisper when Nana was going to dance, cause somehow he put together the fact that there was music during the service and the fact that we’d talked about the wedding and I had mentioned dancing so he concluded there should be dancing in church (and there probably should have been, I mean, it would certainly have made the catholic mass less tedious!)

Look at that happy face!

I’d tell you I met my new stepsisters and they were both wonderful women, I wish we had had more time together. It’s amazing how families can get reconstructed from one day to the next, what wonderful opportunities we have to connect with people in the modern world if only we’re willing to take them!

If we were really having coffee today, I’d tell you I’m having a hard time getting back into a routine, getting our activities started for winter and such. Fall is coming, and with it a kind of longing or anticipation for my Houston trip this winter. I’m finally going home, after three years (if all goes well) and seeing many friends from Houston this weekend has only made me more impatient. I’d like to manage to live in the present, to enjoy each moment as it comes, instead I’m both excited about and impatient for a trip that’s not exactly right around the corner. There’s this constant yearning for time to go by faster, for the snow to get here already cause it would mean it’s almost time to leave… But I’m not too happy about these feelings, this is one of my favorite times of the year, the chilly weather, all the festivities, the town fairs that start now, Halloween, Thanksgiving, Christmas concerts and shopping and decorating.

I usually love Fall and the beginning of Winter cause it’s a time of such promise… and now all I want is for it to be over already so I can bask in the Houston heat (compared to here, of course!). I swear, it’s like I’m never happy!

Anyway, I’ll try and concentrate more on the present and less on the future cause the future will come eventually and the present is gone in an instant.

And with that, I’d offer you more cake, and send you off to visit our hostess Amy as usual. Toodles.

Amazingly I didn't manage to take one focused picture of the bride and groom!
(Hopefully the husband did a better job, and I can post some of his pics!)