Living with Leukemia part 9. The End.

When I started this series of posts on how the Husband’s illness affected us I never thought I’d end up where I am right now. I actually thought I’d be at the opposite of where I am right now. Cause where I am right now is at the dashing of all my hopes and dreams. The other day I mentioned a quote by Dr Seuss from Oh, the places you will go, if only we knew when we embarked on this voyage the places we would go. We would at least have tried to veer off course, perhaps.

The Husband and I, we’ve been off for some time, possibly since a little while before his illness. When I think back to when he was first diagnosed, how we honestly thought it would bring us closer together, how such a serious hurdle to overcome together would help us put aside all our pettiness and it would bridge whatever divide had started to come between us, how silly of us. It did, of course, for a time, it brought us back together, we clung to each other like a drowning man to a life raft. And yet here we are discussing the dreaded S word, the one that precedes the much more final D word, the point of no return.

Tonight I lay in bed next to the Boy and all I could feel was guilty. The endless debate in my head: how can I seriously consider tearing apart his stability, pulling the rug out from under him, how do I break up his home? And yet, how do I not? What am I teaching him, we’re his example of love, of companionship, of partnership, we’re teaching him how to relate to others, is this really what I want for him?

The Husband and I, we’re civil, most of the time, we’re friends, we talk and get along but we also hate each other, we’re mean, and unpleasant, we’re not really good examples. We could go on like this for years, most likely, but why? Why should we, when we still remember what it was like to love each other, to like each other?

I don’t know where this is going, but I do know it can’t stay like this, because if no one is happy then everybody loses.

This is the last living with leukemia post I’ll write, because it’s heartbreaking to me that we managed to avoid the one and only really terrifying ending that could have come from this illness, that of a life without the Husband, ironic then, that now I may still be living my life without the Husband. 


If you're interested in the other Living with Leukemia posts you can find them here:
Part 1 - The Girl
Part 2 - Me
Part 3 - Me again
Part 4 - Broken
Part 5 - Anniversary of T.W.C.O.A.T.
Part 6 - Anger
Part 7 - Loneliness
Part 8 - The Ugly Truth

Sometimes I don't make a bit of sense

I haven’t disappeared, or given up blogging… but the husband’s gone back to Italy and this means two things: I am the children’s number one entertainer and my photo editor, organizer and transferer from memory card to computer is gone. Hence, no writing and certainly no photos. Alas (or thankfully, depending on the points of view) we are flying back to Italy next week and we’ll be back to our regularly scheduled programming.

I wrote this post last week (or the week before, have completely lost track of time) and though it is long and rambling and not completely coherent I felt bad just leaving it sitting there so am posting. So for now, I leave you with this, and I’ll be back to writing and commenting (and tweeting, pining and what have you) next week if the jet-lag and my two kids don’t kill me.

The question I hated the most at the beginning of the whole leukemia saga was “how are you?”, with the head tilt and the concerned expression. And my answer was always “fine”, because what the hell else was I supposed to say, right?

I certainly couldn’t answer: “I feel like something large and slobbery ate me, digested me and shit me out and I was just barely conscious enough to experience it all”, because, well, who wants to hear that, and what could they possibly say in return. 

After two years nobody asks me that anymore, people go on with their lives and even though the husband actually was re-diagnosed this year and had a second transplant, the news was old and trite and simply didn’t elicit the same sensationalistic reactions. Which kind of surprised me, on the one hand, because obviously with cancer if someone relapses pretty quickly after treatment the odds of them surviving kind of start going down. On the other hand, I had fewer questions to answer and fewer people to reassure and that was definitely a good thing for me.

Now, though, I’m seeing lots of people that I hadn’t seen since before the illness so the how are yous have started all over again. And this time around, with a teeny bit more maturity and distance from the fact I’ve started giving it some actual thought. How am I? The first thing that popped into my mind when I thought this was, well, I’m way better than I would be if the husband had died aren’t I? Certainly on the more positive side of the spectrum as far as possible attitudes go, but not quite comforting either.

How am I?

I’m a little sadder, generally, than I used to be. Not about anything specific, I just used to be more happy-go-lucky. I’m a little more distant I’m trying to let go of my expectations. I’ve had some disappointments, throughout these two years of the husband’s illness, from people I thought would be closer to me, from people that really should have been closer to me, but I’ve learned something very important in the process. Most of our disappointments are the result of our expectations, if we can let go of those our lives will be much easier. I hope I learn to do this in this lifetime.

I also have a more developed sense of what’s important in life. Not that I don’t often find myself wasting time and energy on futile feelings and actions but I’m learning to recognize them as unimportant, and I hope to get to the point of just letting them go (soon). 

So, how am I doing? Better than I would have thought, worst than some people think. It isn’t all water under the bridge yet, unfortunately. Every day that passes that the Husband doesn’t relapse is a good day, but we don’t know it’s a good day until it’s over. It’s like you wake up and hold part of your breath, and you hold it all day, and at the end of the day you breathe out and think phew, one day further from the transplant. Every day we’re a little more optimistic, but the illness is still very much a part of our lives. Even though the people around us forget, and thank goodness that they do, we don’t forget. Not ever.

So this makes me more emotional and I have a shorter temper especially when I see people close to me getting angry and upset over stupid little things. I want to tell them, you’re alive, you’re healthy, you’re loved, stop fucking worrying about what people think about you, or stop getting mad because that guy cut you off or who the hell cares that this or that wasn’t perfect, but this is what people do and who am I to say they shouldn’t.

I find I’ve distanced myself emotionally from many of the people I love, but that happens I think when you try and let go of your expectations. With no expectations there are no disappointments, but there’s a certain, necessary, emotional aridity that’s a direct result.

So, how am I? Well, I haven’t really figured it out yet, but at least I’ve started asking the question too, and maybe, hopefully, someday soon I’ll know and I’ll start feeling normal again. 

There, but for the grace of God

A few days ago I ran into a lady I know, and I found out that she recently lost her husband. Her husband had cancer, from asbestos. They diagnosed him last December, he passed in August. She’s doing what any of us would be doing in her place, she’s going to work, going about her daily activities, doing what needs to be done, she’s holding up, she’s… surviving…

But she’s devastated, she looks terrible, she’s aged, and her eyes are sad. Her eyes are vast pits of sadness, I could barely stand to look into them, such was the loneliness, the hopelessness, the unadulterated, boundless, inexplicable, all-encompassing despair.

Seeing her didn’t so much as take my breath away as it quite simply sucked it so violently out of my ribcage I wondered if I would ever breath again. I had no words, no comfort to give, nothing to offer that could possibly make her feel better, because, let’s be honest nothing will make her feel better for a really, really long time.

And all throughout this brief encounter, as I let her talk because talking about it seemed what she needed in that moment, as I looked at her, tried to show her support, tried to express something, anything that would show her I cared, a teeny voice whispered in my ear… “there, but for the grace of God, go I”.

Linking up today with Shell at Things I Can't Say

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.

Living with Leukemia. Part 7. Loneliness

Loneliness is a sad, sorry state. I’ve always been wary of being alone. I left my family when I was relatively young, but I was lucky enough and patient enough to build strong relationships with friends and long-distance relationships with family because I never wanted to be alone. I got married, started a family of my own and thought I really would never be alone. But then, years in, I realized that we are, in fact, always alone. 

Someone once said to me that I needed to harden myself against this fear because in the end everyone dies alone and there’s neither shame nor sorrow in living alone. This thought always made me a little sad. Then something happens, in my case it was the Husband’s illness… and I’m back at the idea of being alone.

The reality of this phase in our lives is that he’s alone with his illness, his recovery, his fight I can only sit by and observe, try to help, but in the end I can’t really know how he feels and by the same token, I’m alone on my end, he doesn’t know how I feel, how it’s affected me nor does he, or probably should he, care.

How to deal, how to claw my way out of this incomparable sadness, out of this quite possibly unjustified sadness, is a mystery to me. I often find myself looking at my life like I’m looking in a mirror towards a parallel dimension, another me, smiling, taking care of her children, her family, doing everyday mundane things, enjoying a holiday, talking to friends, and then there’s me, looking through the glass, a little sad, a little melancholic a knot in my throat that won’t let me cry but won’t go away either. A constant undercurrent of tension, clenched teeth, always, slightly on edge, possibly not enough to warrant real worry, but just enough to take the joy out of things. 

I’m often confronted by the idea that the person I married, my other half, isn’t there for me, can’t be there for me, not right now anyway and I wonder what to do when I’m the one adrift. I don’t want to whine, I don’t want to assign blame where no blame can be assigned, but I feel how I feel and there’s not an awful lot I can do about it. So what do I do about it?

I find myself looking at other people now, people around me, working, living, smiling, doing their thing and I wonder if maybe they’re a little sad too, I search strangers’ faces wondering if maybe their smile doesn’t quite reach their eyes, and wondering how they do it, how they plod through their days, how they sleep through their nights. And I feel guilty (when don’t I?) because I think how lucky we are, the husband’s here, with us, my children are healthy and a joy to raise, we’re solvent, we have jobs to go to, a roof over our heads, no major crises befall us and yet the constant, relentless sadness sucking at my soul, making me feel so lonely I could cry but actually can’t. It’s inexplicable and inescapable and leaves me wondering what I should do.

Virtual Coffee {8}

Too bad Tuesday comes around but once a week cause I really enjoy this virtual coffee date. Well, actually maybe it’s not so bad as Tuesday is the Nanny’s day off and my life runs significantly less smoothly without her.  Anyway, now that I can finally sit down with my lovely Nespresso Coffee, I would tell you that my house looks like a train wreck (just without all the blood and gore of course).

You see spring is finally, officially here and I can no longer ignore my bi-yearly duty of the “seasonal closet rearrange” (about which I wrote extensively here, if you’re interested). This year I totally lucked out because my MIL and the husband’s aunt are visiting so not only do I have two extra sets of hands to move four people’s clothes, bags and shoes around, my MIL is also an organizational genius and she’s rearranging all my closets so I will never have to go throw this massive pain in the behind again. Ever. I am beyond thrilled. Also, I have someone with a very critical eye going through all my crap with me and constantly going “are you sure you want to keep that?”. Now, I realize I may sound sarcastic right now, but I swear I’m not. Most of my friends would want to kill their MILs for sticking their nose so far into their business, but I am genuinely, seriously relieved and happy to have someone help me put order in my life. I love order, I’m simply missing the gene necessary to achieve it independently.

Also, if we were really having coffee today I would tell you that the boy seems to have potty trained himself all on his own this week, with really minimal intervention from me. I’ll be dedicating a post to this (isn’t my content grand?!) but I don’t want to jinx it, so for now I’m just sharing the news with a sigh of relief and the rest of my thoughts on this thoroughly interesting subject shall be forthcoming. I’m sure you’re all on the edge of your seats in anticipation.

I would also tell you that I’m beyond thrilled (again) because the husband is showing signs of having GVHD (graft versus host disease) which sounds truly horrible and means that his immune system attacks certain cells on his body, in this case his skin, but is really, actually, wonderfully amazing news because it means that the immune system is starting to work and therefor should take care of the few random cancer cells that always remain after chemo. Basically, the husband has a rash that itches and stings and is a ginormous pain but we’re all thrilled to pieces cause it’s a sign the transplant worked and this time his immune system is doing it’s damn job. It doesn’t mean we’re out of the woods or anything but it’s a positive sign and frankly at this point we are happy to celebrate even the smallest victories.

Ok, finished my cup and hope you enjoyed yours! I’m off to stare in wonderment at my halfway finished closet and try to get the rest of the mess under control.

Oh, but one last thing, I have an extra special, super duper guest post tomorrow that you absolutely cannot miss because this girl’s writing is amazing. So please come back to check her out and say hello.

Now go say hi to our hostess Amy!

For my Italian readers: MIL sta per mother in law (suocera)

First week down

Last Sunday was a very depressing day, this Sunday was much better, we’re adjusting. I can’t say it was fun and carefree, per say, but at least the black cloud hovering above our heads is a much friendlier grey.

The husband finished chemo Saturday and today he’s having the transplant and then we wait. We wait, and hope and pray (and do a little fortune dance) that everything works out and that his immune system kicks in to fight the leukemia swiftly and definitively.

It’s amazing to me how people adjust to whatever situation. I always wondered how people dealt with things like wars and disasters, my dad (who was a young man during WWII) said to me once that you adjust because that becomes your reality. It’s sad, but simple. I’m not comparing our situation to a war, or a terrible natural or man-made disaster (just think of the recent ones) but if people can adjust to such terrible ordeals they can definitely adjust to tiny, small-scale personal “disasters”. We’ve adjusted, it has become our reality and that’s how we get through it.

Of course, I can’t wait for this to no longer be our reality and for the husband to get home and be well so we can move on, but it’s not as bad as I thought. The kids are getting used to talking to him on the computer (the Girl even kisses the screen to say bye), I’m getting used to this temporary single-parenthood (hat tipped to actual single parents, by the way), the sun is shining and everything is looking up.

Now, for actual news of the husband: he’s getting the first transplant today, it’s like a blood transfusion with the original donor’s cells, so it’s almost like an autologous bone marrow transplant, meaning it’s easier to handle.  Then we have to wait for him to start feeling the effects of the chemo, which will make him feel really bad for a few days (hopefully not weeks), and then we wait for his blood counts to go up. He should be allowed to come home once his white blood cells are at around 1500 (normal is 4000) so he has at least some immunity to be able to leave the sterile room.

This is what we know for now, the rest they’ll tell us as we go along. Most of what they’re doing is experimental at this point cause of how soon the cancer came back. I was going to start that last sentence with “unfortunately”, but in keeping with my new more positive attitude I should have started it with “fortunately” since we’re lucky to live near a hospital that can and is willing to try experimental treatment in this case.

Wow, I started out thinking this was going to be a really short, quick update post, and I’ve been rambling on forever. Brevity is not my thing lately. Ok, I’ll shut up now, see you tomorrow for virtual coffee!

No woman no cry

The original title of this post was “Heartbreak, a little piece at a time” but then I went and got inspired by the king of reggae of all people. This post has been a weeklong work in progress, so if it sounds fragmented, well, it’s because it is. Let’s just say it reflects how my feelings have evolved throughout the week.

My chest hurts. It physically hurts though there is no physical reason for it. My sternum feels like it’s been whacked repeatedly, it feels bruised; it hurts at the slightest touch. I debated with myself long and hard about whether I wanted to write this post or not, it’s almost too personal for my personal blog, but at the same time the reason why I started blogging was to have a place where I could write what I couldn’t say out loud. That’s why I don’t use our names… but then I went and told everyone I know about it and now I find myself wondering whether I can talk about whatever I want or not cause I’m not just communicating with strangers, I’m also communicating with friends and family. The conclusion I came to was that I’m thirty five years old and I need to be able to communicate what I need to communicate without having to worry about anybody’s opinion, or judgment. It just means that my friends and my family may find out something new about me, because at the end of the day, those people who judge will judge me whether I speak my mind or not, so I might as well vent in the process.

So let me tell you why my chest hurts. Many moons ago a Chinese doctor told me that the center of the chest, the sternum, represents our emotions, our feelings. It’s where we send (or more precisely, block) all that emotional energy that we don’t want to, or simply can’t, deal with. I’m a huge repressor of my feelings, I always have been, so my chest has often hurt, off and on. Obviously lately I’ve had to keep it together, be strong, be centered, and you can’t do that if your emotions are all over the place, so you repress them. And that’s why my chest hurts. And that’s why I don’t want to talk about the husband’s illness this time around.

I’ll write about it till my finger’s cramp, but I do not want to talk about it, because I’ll start crying and I won’t be able to stop. All this to say, don’t ask me about the husband, please, again, I will keep everyone posted. If you really can’t help yourself, send me an email but don’t make me talk about it cause I can’t.

What prompted this post? What’s so personal that I can’t talk about it?

Well, Sunday was our last day together, we celebrated Easter, we spent a gorgeous day with absolutely beautiful weather together. And the husband packed his bag. As he was packing his bag he started quietly crying. Now think about this for a sec, you walk into your bedroom and your husband, your man, your rock, your soul mate is packing his bag for the hospital and he’s crying. He’s crying because he doesn’t want to leave his family, he doesn’t want to be ill, he doesn’t want to be shut up in a sterile room for a month, and then another month, he doesn’t want to feel like shit run over again, he’s scared and angry and afraid he’s never going to get better. And tell me, tell me if it doesn’t feel like your heart is going to implode in your chest.

There is nothing I can do. There is nothing I can say to make him feel better, to make it easier, and it breaks my heart.

The unfairness of it all has no explanation, no meaning, nothing that we can cling to and say if we do this or that everything will be alright in the end, because we have no way of knowing. I guess what’s different the second time you hear the doctors say leukemia is that you simply don’t go in with the same blind hope that in the end everything will be alright, because, quite simply, we have no way of knowing.

Now this post has been in the making for a few days, it’s been read, and re-read, written and re-written and what I can say at this point is that now that he’s in the hospital both the husband’s mood and my own have improved greatly. Dreading something is much harder than actually living it. When you’re weathering the storm you’re too busy to worry about the water seeping under the doorframe, so to speak. Whereas when you’re waiting for it, sitting in front of the weather channel going “oh shit, the hurricane’s coming” it feels like the worst thing in the world. So, here we are in the middle of the freaking hurricane.

You know, many months ago I read a blog post where the author was talking about a friend who was fighting cancer or something like that, I can’t remember, but what stuck to my mind is an idea she put forth in her post I think it may even have been the title of the post: “It’s better than chemo” and the sense was that we complain daily about hundreds of little annoyances but really if we compare them to having to undergo treatment for cancer they really start to seem insignificant.  And so I started saying it to myself, in my head, occasionally: “the baby kept me up all night… well, it’s better than chemo”, “I have to work late again, eh, it’s better than chemo”, “the car won’t start…”, “that asshole cut me off…”, “I lost my keys…” most things are actually better than chemo, except possibly the alternative to having chemo if you have cancer (i.e. death). It really puts a lot of things into perspective.

I guess that my long and rambling point is that cancer sucks, it sucks that the husband is back in the hospital, it sucks horribly that he’s not yet forty, has two small children and a wife who loves him more than even she thought possible (that would be me) and he has such an aggressive, recurring, crappity crap pot leukemia that won’t leave us the hell alone, it sucks beyond what is humanly imaginable that he has to go through the whole treatment again after less than a year but it sucks infinitely, monumentally less than the alternative, doesn’t it?

So there you go, despite my best intentions of writing a sad, sad post, it seems that the silver lining is always lurking somewhere in the back of my mind. I guess this is what I want to leave with you today, as a sort of hat tipping to my dad and to the husband, the two most optimistic people on the planet, there is always some good to be found in hardship. And that is what we must grab ahold of with all our strength, because in the end, thinking of the good is what gets us through it.

My heart breaks every time I see the husband in pain, or upset, or dreading the chemo, the endless transfusions, the loss of his hair and his strength and his will, and yet we treasure the time we get together when I visit in the hospital, quiet time, just he and I, to talk and dream and plan our future together whatever and whenever it may be. Because though it’s true that we’ve lost the blind hope of the newbies we still need to hope, believe and have faith that in the end “everything’s gonna be alright” because that’s what life is all about (or so Bob Marley says).

Virtual Coffee {5}

Hello friends, I’m late posting today cause it’s been an insane day. I fear I may sound whiny with our coffee today, so if that’s going to irritate you and you want to leave I understand. No, that’s not true, I will get upset everybody needs a good whine every once in a while! Plus, I’ll let you whine all you want next and I won’t roll my eyes at you once. Promise.

As most of you know (and if you don’t read here, and here, and here, oh and here) the husband went back in to the hospital yesterday morning. He started his six days of chemo today and will have the transplant next week. What this means for me, apart from a lot of heartbreak (incidentally, tomorrow’s post will be unnecessarily depressing, I’m warning you so you can steer clear if you’re pms-ing or tear-prone or just having a bad day) is getting used to a different routine.

I need to get back in the groove we had last year. Just getting his meals to him today was a challenge, I need to start planning menus again, so I know what to buy for him and I have to start cooking in the mornings again, so I can bring him his lunch and dinner on time and I need to keep on top of his laundry and generally making sure I keep his needs met, cause he doesn’t need to worry about stuff like running out of underwear or having to eat the totally disgusting hospital food. It’s no big deal, we’ve already had practice, but today it all threw me for a loop for some reason and I spent the day running around town like the goose in a wild goose chase.

So anyway, I totally need this coffee, though as I’m writing it’s actually 11pm where I live, plus it’s decaf so no chance of it keeping me awake, the empty bed should do it. Sniff.

Ok. All whined out. Thank you for listening. I may not put out my best work this week, but we should be back to our regularly scheduled programming by next week at the latest so don’t lose hope!

God I’m depressing today… go visit Amy, she’ll cheer you right up I’m sure!

Oh, also, you’re turn, go ahead whine away!

It is what it is

No long-winded preamble today, I just don’t have it in me. The husband had the bone marrow biopsy again today; the blast cells have increased, meaning the leukemia is in full swing, meaning he’s being admitted into the hospital on Monday for another transplant.

The only good thing we can think of is that we can stop stressing. The past two weeks have been wonderful on one hand and intensely yet quietly stressful on the other. Did we do the right thing by waiting? Should he have just gone in when the doctors wanted him to and be done with it? He would be halfway through the first treatment by now. But on the other hand the work he did emotionally, the cleansing diet, the memories we made are priceless and I wouldn’t have wanted to give them up. We’ve been spending so much time together, having such a wonderful time, but underneath it all the doubts, the fear, the stress. At least now we know, and it is what it is.

He had the biopsy this morning and we spent every minute since then thinking about what the outcome was going to be, but acting like it was the furthest thing from our minds. Hope in our hearts, doubts in our heads. And then we got the call at four in the afternoon; the disappointment took our breaths away. And we went from sadness, to anger, to disbelief to anger, to fear – of the treatment, of how badly he’s going to feel, of the possible consequences on his already challenged internal organs, of the nausea, of the loneliness. But in the end, what can we do? All the anger, all the tears, all the disbelief in the world aren’t going to change the outcome. He has to go in the hospital, we’ll both be lonely, each on our end, the kids will miss him, there will be challenges, he’ll feel crappy for who knows how long, but it is what it is and we can’t change it and whining about it isn’t going to make it go by any faster.

So we went out and bought the boy a tractor, the Easter Bunny was supposed to bring it, but what the hell. We set out to get one of those electric tractors with an engine but he fixated on one with pedals, with a wagon for his sister and a digger attachment in the front. He’s in seventh heaven, and the smile on his face when we told him he didn’t have to wait for Easter to get his tractor was priceless.

This weekend should be sunny, we’re barbecuing on Saturday, we’re going to enjoy our last few days together, we may even go for a bike ride or down to the beach for the day, and then on Sunday we’ll pack the husband’s bag; because we’ve decided to be happy and relaxed despite the situation, or we’re trying to be in any case. Because life is simply what it is.

Buying Time

This week has been an emotional rollercoaster. Well, the whole month’s been an emotional rollercoaster, but this week we seem to have reached and descended from the highest peak. And nobody threw up. So, phew!

On Tuesday, which incidentally feels like it happened about three years ago rather than three days ago, the husband had a bone marrow biopsy. We spent Wednesday with bated breath, jumping every time the phone rang, waiting for the results, which were honestly neither hear nor there, neither fish nor fowl, neither… well, I could go on like this for a while, but I’ll spare you. Basically, the blast cells (i.e. crappy cancer cells) had increased, but by a relatively small percentage. The husband, who is undergoing an alternative treatment that I’m not going to get into now, but I will explain in detail in the near future (not trying to be cryptic, but we do have our reasons, so bear with us!) was hoping that the blasts had decreased. At the same time, we were having some strong doubts as to whether this alternative treatment had had enough time to actually be effective. After long discussions with his doctors, who obviously strongly advised him to start the treatment as planned on Thursday (24th), we decided to take a two-week hiatus and have another BM biopsy before starting the conventional treatment.

This decision was taken neither lightly nor recklessly. We are perfectly conscious of the fact that we have two small children and our first and foremost responsibility is towards them. That said, the rate at which these cells are multiplying suggest that in two weeks time they should/could have increased by about 10 – 15%, after much thought we decided that this calculated risk was acceptable.

When talking about cancer, alternative therapies can be considered a load of hooey, or not. I’m not going to get into this now, but I will say that both the husband and I strongly believe that when fighting an illness of this magnitude medicine will only get you so far. The patient’s attitude, his outlook, his optimism, his strength and desire to get better are just as, if not more, important than all the chemo in the world. So, for the naysayers, whom I wish to exhort now to please keep their opinions to themselves for the time being, let’s just say he’s taking these two weeks to spend some quality time with his wife and kids before being shut up in a sterile room for several months, and leave it at that. He is taking supplements, and he has changed his diet, he is resting, so that his body will be better prepared for the onslaught of chemicals that may come. He’s recharging his batteries, creating memories to cling to, and enjoying the start of spring, so that, if he does have to go through the conventional treatment, he will at least be more prepared physically, emotionally and spiritually.

Our belief is, of course, that he won’t have to go through the conventional treatment because, as I said, the mind is a powerful thing, and stranger things have happened. Prayers and positive thoughts and energy help too, so will be expecting loads of good vibes from our readers! ;-)

Living with Leukemia. Part 6. Anger

Honestly, I was really hoping to be done with the whole Living with Leukemia series. I thought I would do a post in April about what life was like a year after the transplant and then I’d be able to forget the whole sad ordeal. Why is it that nothing ever goes according to plan?

So here we are again, talking about chemo and transplants and what not, and my strongest feeling right now is anger. I’m angry. I’m so royally pissed off that there are no words to describe it. And I don’t want to talk about it, which is why I’m writing about it.

So first things first, don’t ask me how we’re doing, and more than anything don’t ask me how the husband’s doing. We’ve got two blogs, we’ll be writing about it, I promise, but I cannot, I simply cannot spend another year talking about how he’s doing, how the chemo is making him feel like shit, speculating about what could or could not happen and what the next move is. Ask me how I am, ask me about the kids, but don’t expect me to talk about the cancer cause I just can’t. Sorry.

Now that I got that off my chest… we can move on to the anger and anxiety, which much like Jack and Jill, go hand in hand until they both go tumbling down.

As I mentioned in previous posts, I’m a little stressed. I’m stressed because life was finally going back to normal, the husband is feeling good again, he’s got energy, he can play with the kids, he goes to work, we were making plans for our future… And two weeks ago it literally came tumbling down. Because, and this is what nobody talks about as “it’s just not done”, when you’ve got a very resistant type of leukemia, you have a BM transplant after three rounds of extremely aggressive chemo and radiation therapy so strong that your body could not withstand another round, and the fucking leukemia comes back after less than a year the undertone to every single conversion with your doctor becomes if you survive.

This time around we know what we’re going to be going through, the husband knows exactly how shitty he’s going to feel, I have to watch him go through the whole damn process again, the kids won’t see him for at least a month and when he comes home he won’t have the strength and energy to be with us like he does now. And we don’t know how it’s going to go. Of course, we had no guarantees the first time around either, but then again the first time around we weren’t told, and I quote “if you had gone to another hospital they would have told you there was nothing else to do.”

So this is why I’m angry. Because after the year we just had shouldn’t we be given a break? I mean, really, fate or whatever else manages the events in our lives, the happiness and suffering allotted to us, couldn’t just have diverted its attention from us for a little while? Horrible things happen daily to all manner of people, just turn on the news. But I’m still mad. I just wanted to have a few years of calm, and planning for the future and raising our kids with no major drama. Is that really too much to expect?

Breathe

I can’t sleep. If I wake up at night, and I’m doing an awful lot of that cause the kids seem to have picked up on the tension and call me two or three times a night, I can’t go back to sleep. I think of all the things we could’ve done or should’ve done or need to do before the husband goes back into the hospital (sometime next week). 
Saturday we met up with some good friends from Milan. We decided to have a picnic at the beach. And I started stressing about it Friday. I hope it’s sunny, the husband needs some sun before he gets shut up in the sterile room, I hope the kids are good, he needs to relax, I hope everything goes well… Basically a recipe for disaster, I worked myself up to such a state of agitation that I spent the entire day feeling sick, my stomach in knots, angry at the weather for being crappy, wondering if maybe we should go somewhere else where it was more sunny, and generally not enjoying a minute of the outing.

All for absolutely no reason, cause I can’t control the weather and other people and the husband would probably have had a much more enjoyable time if his wife had been a little less neurotic and sleep deprived.

The fact is there’s a clock ticking above my head, counting down to Thursday or Friday when he has to be admitted in the hospital. The doctor’s keep moving the dates up, he was supposed to do the biopsy on Wednesday but now they’re saying Tuesday’s better and it’s driving me insane because I feel like there’s no time. It’s good that they’re on top of the ball, trying to get everything done as soon as possible, they’ve been telling us from the start how important it is to get in there as quickly as possible, but at the same time I want to say, no stop, we need more time why are you rushing like this, is there something you haven’t told us?

The husband turns to me, more and more often, and says:  breathe. Because apparently I hold my breath, constantly, like that will somehow stop time: oh, I’m not breathing hence time isn’t passing. Totally ridiculous, I know, and yet at times it’s just easier to not breathe.