Tag Archives: leukemia

Crying, rivers and streams

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I used to have a husband.

I used to have a man that loved me, took care of me, put me first and who put my happiness above all else. I married this man, I loved him, I gave everything to him, I tried to make him happy and to take care of him. We made two beautiful, perfect little lives together. I was exceedingly lucky.

Our marriage wasn’t perfect, but it was ours and it worked. For a time it worked. And then it didn’t work.

He got leukemia, twice, he had two bone marrow transplants; he developed an illness called GVHD (graft versus host disease), which some transplant patients get, but he survived. He survived, but we didn’t. I don’t even know when and how it happened, our marriage died, slowly, over time, we didn’t even notice. One day everything was fine, and the next I simply can’t take the fighting any longer and I ask him to leave, for the night, for a few days, just to get a break from it all. He left, and it was a nightmare, so he came back after a week, but he never really came back. He came back and slept in another room, he shut down or off or maybe I only then started noticing. He simply didn’t love me anymore. It took me forever to understand those words. How, how can he not love me anymore? We’re supposed to love each other forever. We’re supposed to love each other more each day, not less, not stop.

It took months, months of arguing, of crying, of trying to wrap my mind around it, months of negotiating, figuring out what we were doing, months of hopes and crushed hope, months of misunderstandings, of righteous indignation and of broken hearts.

Finally in September I accepted that I could not and would not try to keep a man who loved me, yes, because we’ve been together for sixteen years and have two children, but who no longer loved me as his wife, who no longer loved me for me. And then it took two more months before he finally moved out of the house, but only half way, all his stuff is still here. And after that we still went on for months trying to figure out a new routine, trying to parent together without being together, trying to become independent from the other while maintaining a good relationship. I never threw a vase at him. I wish I had. I wish I had yelled at him, I wish I had gotten angry at him and thrown plates at his head, I’ve got so many plates. I wish I hadn’t cried quite so much.

Last week he was diagnosed with leukemia again. AGAIN. And I’ve started crying again, and I can’t stop, I literally can’t stop. I used to have a husband, now I have a man that I love, but with whom I am no longer married – on paper, I am, but in every other way that counts, I’m not – who needs me, who I can’t abandon if for no other reason that he’s the father of my children and because I can’t imagine a life without him in it, and because he is my family and I am his. And so I can’t stop crying, crying rivers and streams.

Like a dagger, or a whisper

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Recently, something happened that touched me, pleased me, and broke my heart all at the same time. A girl wrote me… well, let’s be honest, a woman wrote me, a woman my age, which is why I wrote girl just now… when will I start perceiving myself and my contemporaries as the old fogies we are rather than the adolescent I believe myself to be? Yet that is neither here nor there.

So this woman wrote me an email, she’d been reading my old blog, moomser, and was asking if I’d moved elsewhere, so I redirected her here. I asked a bit about her and the email that followed broke my heart and made me cry. Actual, literal, tears.

Many moons ago I wrote a post titled “There, but for the grace of God” (http://moomser.blogspot.it/2011/11/there-but-for-grace-of-god.html) , take a minute to read it if you’re up to it, because nothing I’ve experienced so far has once brought me that feeling of having barely avoided tragedy so much as the email I received a few days hence. This woman who wrote me, she could have been me, or rather I could have been her; her situation was so similar, so similar and yet, as she says herself, so different. And reading her email, it made me ashamed, because for months, for years, even now, I concentrate on the consequences of The Husband’s illness, and there are still many, but at the end of the day I still have a husband, my children still have their father. And she does not.

I cannot even imagine, my brain refuses to imagine, how that feels.

I’m going to be brutally honest for a minute here, please don’t judge me too harshly…. there are days, in fact, there are entire weeks, where the Husband and I don’t get along, at all, and I have more than once entertained the thought that my life would be easier if he had died. Yes. I actually just wrote that. Out loud, as it were. I can barely bring myself to reread the words. Not my children’s lives, of course, I would never wish something like that on them, but my life, yes. At times I’ve though that had he not survived the illness then I would have mourned for him, I would have grieved, it would have been unspeakably difficult, but I would have healed and moved on, as I’ve seen countless people do. I would not be fighting to fit this new person I am married to (because the illness has inevitably changed him) into a box shaped like my old husband. The leukemia and all that came after changed him, as it changed me, but sometimes it’s hard to be married to a person so different from the person you married. So I’ve (callously) wondered “what if” in my darkest moments. And now I feel ashamed.

The email I received was in no way self-pitying, it was upbeat, engaging and she spent more time talking about the similarities between our situations than the differences, but the differences are what broke my heart. I cried for this woman I’ve never met and I cringed at all the posts I’ve written complaining about the Husband for this and that other reason. Because I still have a husband, and my children still have a father, and that is a much bigger blessing than I often realize.

Over the years I’ve been contacted by several women in my, or similar, situation, but I’ve gradually moved away from the illness and that period in my life and I’ve lost touch with most of them. Although I still wonder about each and every one of them, how they’re faring, how their stories continued… but this last woman, well she touched me in a way few people have in my life, because, well, truly, there but for the grace of God go I.

All this to say, every time I get a comment or an email from a reader, it teaches me something about life, about love, about death and sorrow and pain, but also hope, and happiness and health, it touches my heart like a dagger, or a slap, or a whisper, or a caress, but it never, ever leaves me indifferent. So thank you. Thank you for reading, thank you for writing, for reaching out, thank you for being a part of my life.

On death and dying

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This has been a strange week, what with the Boston Marathon and West, Texas, and I know I should probably be writing about that, but something else happened and it’s what stayed at the forefront of my mind.

On Wednesday, I had to go sign some documents with The Husband for the never-ending saga that is the house reno, and since we were done early we managed to get a rare, quick, lunch together. We were chatting about his brother’s baby’s christening that’s in a few weeks, planning travel (it’s in Milan) and dinner out with our friends and whatnot, and I remarked on the fact that I thought his brother would have asked him to be the baby’s godfather, whereas they decided to ask the other uncle and our niece. And The Husband’s matter of fact answer was that they made the better choice since his life expectancy wasn’t very good, and then he went right back to eating his sandwich.

I was kind of shocked and speechless by his answer. I was also surprised to be shocked and speechless. I know his life expectancy isn’t very good. He signed dozens of documents when he was undergoing treatment that stated that he understood the risks of chemo, and radiation therapy, and the transplant and blah, blah, blah. He’s been on some heavy duty drugs for the three years now. We know. But, since he’s always seemed so removed from his illness, he always seemed to do everything the doctors told him, but without ever truly thinking about it, he seemed to ignore the illness and his recovery in a sense, I always thought he avoided thinking about all the negative implications.

It shocked me because I had never really thought about the fact that he lives his life with the uncertainty of seeing his children grow up, with the thought that at some point, some possibly not too distant point in the future, he’ll leave me a widow and our children orphaned.

It shocked me to imagine that he doesn’t think he’s going to be around very long.

How do you live like that?

The leukemia is in remission, he should be relieved, he should be looking forward and thinking about his future, instead with every handful of pills he takes every day, twice a day, he thinks that his life expectancy isn’t very good.

I realize I’m not saying anything new, we were aware of this, but I never really thought about it, about how it impacted him (ridiculous, since he’s the one it’s impacting daily). It just made me really sad for him, to think that this is how he lives his life, with Damocles’ sword overhead. So with tragedy and death all around us these days, this is what I’ve been thinking about, the uncertainty of life and the gift each day that we have really is.

If wishes were horses…

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It’s a beautiful day today, the sun is shining, the birds are chirping, the breeze is still cool but there’s hope of warmer weather in the air. And I’ve been totally jacked up since yesterday, my trainer even asked me if I was on amphetamines yesterday morning since he’d never seen me so chipper so early (or ever, in fact). The answer is no, in case you’re wondering, I wasn’t, I was probably just high on the unexpected, unseasonable, sunshine.

But of course, as life has taught me repeatedly lately, to every high there is a low… something about keeping balance in the universe… although, if you ask me, there’s altogether too much low in the universe and definitely not enough high.

Anyway… the Husband is ill again. Nothing serious. He’s just got a relatively high temperature and is nauseous, which could be nothing or it could be plenty, but that’s not my point. I’m just so monumentally sick and tired of him getting sick. Of course he’s not capital S sick, but still, every few weeks, or months when we’re really lucky, he gets sick again. He lies in bed all day, he doesn’t eat, he needs to be taken care of, and sometimes he gets better on his own and other times he spends 10 days in the hospital like we did in Houston, racking up a bill that would have bought us a new house (thank god we still have insurance). He’s not big on complaining, mind you, and we’re married so there’s the whole in sickness/health thing, also I love him, but still, I would like to go back to a life where we could travel and not worry about whether there was a decent hospital nearby.

Ever since I moved to this site from Moomser I promised myself it wouldn’t be about the leukemia and all the crap that ensued, I didn’t want to rehash all that, but trying to keep that part of my life from this blog has resulted in my not having an awful lot to post about. I’m so tired of living with the consequences of his illness, but I’m going to have to make peace with it, because this is what our lives are about, still, three years in. Three years isn’t all that long, but believe me, it feels like a lifetime, a lifetime of worry, and fear, and misery, and meds, and hospitals, lots and lots of hospitals.

I know it’ll get better, at the depressingly slow, slower than a snail’s pace we’ve been moving in, I just wish I had something to take my mind off it, something light, and fun, and easy, to distract me. Then again, if wishes were horses, beggars would ride…

Nurses make all the difference and a tangent on America

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We’re obviously still in the hospital. We’ve been through a lot of nurses since we’ve been here, day nurses, night nurses, nurses’ assistants… the doctors pretty much stay the same, but the nurses change almost every day. We had a great nurse for two days in a row, Jan. She was a very sweet, mothering type, which promptly sent me over the edge. I’m fine as long as no one is acting concerned about me, but the minute they start asking me how I’m doing I completely lose my shit. There was some crying. Plus, we had an unpleasant visit in the Eye Center, yesterday, that left us a bit deflated. The Husband’s been having problems with his eyes, his vision is blurry, foggy, his eyes feel grainy, and it worsens as the day progresses. Obviously this has all gotten worse since we got here due to lack of sleep, the dry hospital air, and some anxiety. The eye doctor wasn’t a very nice person. Which is fine, because, in my opinion doctors need to be good at being doctors and their personality is secondary to that. Of course, in an ideal world, all doctors would be great at their job and have fantastic bedside manner, but I’m not an idealist. But the husband got very anxious, and a bit depressed, and when that happens it becomes really hard to get him out of his downward spiral. Jan helped with that a lot.

Nurses have a thankless job, in my opinion. They do a lot of cleaning up after patients, of measuring disgusting bodily fluids, of coddling people who are ill, and cranky, and unhappy. They have a lot of paperwork, they have to always be attentive cause a mistake could be fatal, and no one really thanks them for it. When people get better they reference the doctor, oh, so and so doctor was amazing, he saved my life… but what about the nurses? And it’s harder to establish a relationship with them cause their shifts are all over the place. Generally, you see the same doctor or two every day, so it’s easier with them, nurses come and go.

We have another great nurse today, John. The first thing he did this morning at the beginning of his shift was come in and say that he was Italian too, by his great grandfather or something like that. He immediately tried to establish a connection. And I guess it worked cause both the husband and I like him quite a bit. Of course, it made us laugh because he’s about as Italian as my knock off, made in China, Prada, but he’s a great guy, he made a point of trying to make us comfortable.

Also, and I’m off on a tangent here, I love that in America everyone (or rather, many people) have a sense of their roots. I’m Italian, I’m Irish, I’m Chinese, you hear from these people who have been living here for generations, who’ve never set foot in their countries of “origin”, who have none of the original traditions left other than what has evolved within their own families to give them a sense of who they were. This is just so quintessentially American to me. An Italian would look at this guy and be like dude, you’re so not Italian man, you’re the typical American (which, incidentally, is what the husband and I were doing in our bitchy heads this morning), but he still has a sense of belonging to a culture that he only knows second, or rather, third and fourth hand. And I imagine that this connection that he feels to his roots is probably what his great-grandfather would have wanted to preserve when he took that difficult and lonely boat ride across the Atlantic to an unknown place in search of a better and more optimistic future.

So the nurses here, they are great, and I just thought it needed to be said.

How am I feeling, facebook? You really want to know?

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I’ve been on Facebook for years now, can’t even really remember how many. I’ve never gone off it, I have no strong feelings about it either way. I don’t feel like it’s invading my privacy, or that it’s covering a broader, hidden, conspiracy to deprive me of my civil rights. I just enjoy seeing what my friends and acquaintances are up to, being nosy about their lives. Plus it’s a fast and effective way to communicate what’s going on with me. I used to like the original third-person prompt for the status update “Bonny is….” it was kind of fun talking about myself impersonally and it made for some hilarious reading what with everyone screwing up their personal pronouns (myself included). Lately though, Facebook has started getting a little too touchy feely for my taste, a little too new agey bullshit…. The prompts now are “How are you feeling, Bonny?”, “How are you doing, Bonny?” “What’s going on…:”.

How am I feeling, Facebook? Do you really want to know? Cause that’s going to make for some pretty disconcerting status updates.

But since you ask, I’m pretty fucking tired, Facebook. The Husband is still in the hospital, we’re getting some more tests done, we’re not really sure what’s wrong with him. My kids, they’re pretty upset. The day before yesterday I left the Husband in the late afternoon, so I could spend some time with the kids, and the Boy had a massive meltdown. “Why is my daddy sick, no one else’s daddy is sick”, that broke my heart. I’m also pretty pissed off at the universe right now, Facebook. And yes, I know, things could be worse, they could be harder, we are pretty lucky, but I’m going to be pissed for just a little while longer ok? I’m going to throw a small, internal, tantrum, and shake my fist at fate, because I am sick and fucking tired of this. I’m tired of having to manage everyone, the kids, my mom, the Husband, his mom… I’m tired of having to be apparently calm and level-headed, of making decisions, of reassuring people, I’m tired of running around from hospital to home, and home to hospital, eating a bite here, taking a quick shower there, dispensing hugs and kisses, playing, entertaining, feeding, hand-holding and coddling, constantly in my practical, comfortable, t-shirt and yoga pants, so I can sleep in my clothes and not look like a complete fucking mess all the time.

 

I want to be able to relax, for just five minutes, I don’t want to worry about the husband, or the kids, or the state of the world economy, for five freaking minutes. That’s my goal this year, five minutes of just absolute peace and contentment.

And also, I need half an hour to wash and dry my hair. How’s that for a status update, Facebook?

Swimming upstream and other things

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Sometimes things don’t go as we would have liked. I feel like that is a lesson life is determined to teach me over and over again. This Houston vacation we are on… not so much of a vacation. We arrived day late, I got sick on Christmas day, the Girl got a little sick, I was in bed for a week, the Husband managed the kids. New Year’s it looked like we were all getting better, and then I got sick again, the Husband started feeling unwell, with a completely unrelated problem, I got better (ish), he got sicker, he spent a week in bed, finally I had to take him to the hospital. We are now at MD Anderson Cancer Center, trying to figure out if he has a virus, if he’s feeling ill because of one of the many consequences of the transplant, if we’re going home as planned on Wednesday (if he can even fly)…

The kids, they are being wonderful, my friends here are being amazing at keeping them entertained, my mother is really doing everything she can to help out… but a vacation it is not.

The Husband jokes that now we’ve gotten first hand experience of the American health industry, which in Europe is often viewed with a certain degree of curiosity and awe, but that’s fodder for another post. Personally, I would’ve done without this insight, but at least he’s staying positive.

I, on the other hand, am a little deflated, I always have such high hopes for my time at home. But, I don’t want to be a total sourpuss, not at the beginning of a new year. There are lessons to be learned in this experience. We can’t control everything or anything really, we can’t count on things going the way we want. I’m not being negative, I’m just trying to keep things in perspective. Our expectations often get the best of us, our ideals, our wishes, wishes that we invest so much in that we start thinking of them as facts, as law, but things don’t always go as we would like and there is no point trying to swim upstream sometimes. The biggest lesson I need to learn this year, I think, is to relax and go with the flow, which for a neurotic control freak is a very hard lesson indeed. But, stranger things have happened, so, I assume, there’s hope for me yet.

For now, send us happy, positive, upbeat thoughts, if you can, and soon enough we’ll all be heading home. Wherever the hell that is!

Because TV and cancer just don’t go hand in hand

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Let me just start off by saying that I don’t have high hopes of this post actually making sense to everyone, but bear with me because I’m pretty pissed off. But first a quick tangent to get the new readers up to speed: my husband had leukemia, he was diagnosed at the end of 2009, he had chemo, radiation therapy and a bone marrow transplant in 2010. And we thought he had beat it. In February 2011 he was re-diagnosed, he had more chemo and another bone marrow transplant. He’s been in remission since. And now back to the point of this post.

I’ve just recently found a way to watch Netflix in Italy (not available here) so I’ve been doing a LOT of the watching of tv shows. In fact, I’ve started watching Brothers and Sisters. It’s a decent show, funny at times, sad at times, Rob Lowe is in it… I’m about half way through season 4, and if I wasn’t so late to the party (it aired a couple of years ago, I think) I would contact the writers and tell them to go screw themselves. Or, you know, to do some research before writing stuff. Now, I’m not an idiot (most of the time), I know that tv shows aren’t real and much of the stuff they portray does not reflect reality, I also get that most of us watch tv to get away from reality not get slapped in the face with it. But still.

One of the characters, Kitty, has lymphoma, she has chemo, she loses her hair, she doesn’t seem to be getting better, the second round of chemo doesn’t work, so she has a bone marrow transplant. Three weeks later: she’s fine! In remission! In fact, she’s home with her baby! Her blood white cell count is up! And OMG a few months later she’s considering running for office. WOW!

To be honest I’m not sure why this pissed me off so much, I don’t think we’re actually going to have a zombie apocalypse nor do I believe that the vampires are among us, but these episodes hit a little too close to home.

The Husband had his second BM transplant over a year and a half ago, and he still hasn’t recuperated his energy. When you get a BM transplant you’re in a sterile room for weeks afterwards, once you get to go home your immune system is still so suppressed you have to wear a mask everywhere, even in your own home, your child gets a cold and you have to stay away from them, and you’re certainly not hugging and kissing all your family members with tears and soulful music moments before a transplant.

A year and a half later, and the Husband still has to take a crap load of meds to keep his immune system suppressed, because if he doesn’t his immune system will attack his body. He’s got scars all over his torso from GVHD (graft versus host disease) which happens when they adjust his meds, because his liver or his kidneys are overloaded, and he gets these horrible red splotches all over his skin, because his immune system, the transplanted bone marrow, doesn’t recognize the rest of his body. He gets tired, easily. His heart is stressed, as are his lungs, from the radiation therapy.

He’s better, of course, every day that passes he gets a little better, but he’s not fine. Not by any stretch of the imagination. His hair hasn’t even grown back. The first time around it was all back after six months, but the meds he’s taking now are keeping his hair from growing back, and he hates it. He hates being bald, because he didn’t become bald “naturally” he’s bald because of the disease, so every time he looks in the mirror he remembers how sick he was, and how unwell he still is.

A few months ago, he had some very bad stomach pains and he was nauseous, there was a stomach flu going around. He felt horrible for twenty-four hours, we had to call the doctor in the middle of the night. The doc gave him two shots but told him that if he wasn’t feeling better by morning he had to go to the hospital, that he should have, in fact, gone straight to the hospital. I have never seen anyone more terrified of anything in his life. He was shaking, not from the pain, but from the fear of having to go back in.

This is what it’s like a year and a half after a bone marrow transplant. You get better, slowly. You go on with your life, partially. You get stronger, hopefully. But you certainly aren’t back to normal. In fact, you can’t even see normal off out on the horizon. And you absolutely aren’t off running for office.

Linking up today with Shell from Things I can’t say