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I’d Like My Husband Back, Please.

Everyone wants to know how Michael is doing, and the only answer I have is a resounding “I don’t know.”

I watch him like a hawk, looking for any sign of improvement or decline.  Promising signs include the fact that his color has remained good since he came home from the hospital a few days ago (it’s no longer the pale, ashen look he had before they topped him off with three units of blood), and he no longer seems to be running any kind of fever, even the low-grade variety.  Discouraging signs include the fact that he’s still got a nasty, rattly cough, and he’s still draggy and tired.  It’s true that he hasn’t missed a single one of the kids’ Little League games, and he can even be spotted out on the field during games, but if you watch a little longer, you might also see him lying down on the bench in the dugout between innings.

I’m not sure what we should be expecting in terms of recovery here.  I’ve stopped looking for a noticeable turnaround and figure at this point that it’s going to be very slow and gradual.  Any improvement does seem so incremental at this point that I’m not even sure what’s real and what’s imagined.  It’s frustrating and disheartening, and it’s difficult to see a light at the end of the tunnel right now.  It feels on some level that we’ve been taken back to chemo days.

Everyone is stressed out and emotionally impacted.  Daisy seems to have been hit the hardest, swinging back and forth between snotty and bratty, and tearful and clingy.  She’s afraid that something bad is going to happen to her or to Daddy when her back is turned.  She and Annabelle went on a field trip for school today, and their teacher (also a friend) texted me, telling me that Daisy was afraid something bad was going to happen to her Daddy while she was away on her field trip, and could Michael call her cell and talk to Daisy and reassure her?  Bickering, tattling, sassiness, and whining have reached a fever pitch with almost all the kids (though, surprisingly, Annabelle, the one we have perhaps wrongly labeled our “problem child,” seems to be holding it together better than anyone else, and her behavior has been notably positive).  Petty crimes have cropped up; Daisy has been caught lying both at school and at home a number of times, and Joey was caught stealing (a baseball card that he regretted trading with his brother) and forging a signature on his homework (the same brother’s signature; he was made to face the music and confess to his teacher that he forged the signature).  It’s difficult to distinguish between what’s just age-related and what’s stress-related, and how to proceed with discipline in either case.

I think we’re all just plumb wore out.

I want our life back.  Michael and I have a romantic trip for two to San Francisco on the books in a month – the first time in five years we will have been away just the two of us – and I don’t even know if it’s going to happen now.  We have a family vacation planned in two months’ time, and I don’t know if that’s going to happen, either.  We seem to be in a holding pattern.  I want a future to look forward to, to count on.  I want my family healthy and happy.

Michael will see his doctor next week and hopefully we’ll get a better idea then of where everything stands.  Until then, we wait.  Patience.  Optimism.  Easier said than done.

Speedbump? Hurdle? Pothole? I don’t Know Anymore.

I wrote a long, ranty post yesterday about how hard everything has been.  Not just the last few weeks, but the last couple-three years, what with Michael battling cancer, then the emotional fallout from that, then the setbacks along the way, up to and including his most recent hospitalization, emergency surgery and brush with the Grim Reaper, how difficult a time he’s had trying to rebound from that surgery and sepsis, and the toll it all takes on poor little me.  It was a release to write it all out, but I didn’t like the whining, complaining tone of it, so I decided to sleep on it before deciding to share it.  Sometimes I do that (believe it or not) – I pour my heart and guts out and don’t share it.

Before I could sleep on it, though, things took another turn.  A recap:

As I said, Michael has had the toughest time bouncing back from his latest hospitalization.  I have waited and waited over the last two weeks since he came home for him to turn a corner, so to speak.  With his previous surgeries/hospitalizations, there would always come a point when he would just seem more like himself again, his energy and strength would noticeably improve, and it would be clear that he was on the mend.  That hasn’t happened this time.  He’s been weak and so incredibly fatigued, sleeping the night and half the day away, with the most minor exertion wearing him out and requiring him to lie down.  He’s had a low-grade fever that has come and gone for two weeks, very little appetite (and has continued to lose weight), and difficulty breathing deeply.  And I admit it, I’ve grown frustrated and a little impatient.  It is difficult to be the one to have to hold it all together, to try to meet everyone’s needs (and to feel like I’m failing), to feel like there is absolutely no room for me to be unwell (even if I have the flu or a raging UTI) or to crack a little bit.  So on top of it all, moods have not been the most pleasant and skirmishes have erupted here and there.

A week ago, both of Michael’s doctors told him that it was the effects of sepsis that were making his recovery such a struggle (plus he had developed anemia).  Which, of course, has been infuriating because it seems so crystal clear that the sepsis could have been prevented had they not allowed him to just languish in a hospital bed for twenty-four hours with no visit from an actual physician while they just pumped him full of pain meds.  But okay, this is what we have to deal with – it can’t be undone.

Yesterday afternoon Michael made himself a cup of coffee (his second of the day) just to try to get through the afternoon.  Upon finishing it, he promptly fell asleep on the patio swing for two and a half hours.  I woke him up around dinner time, and . . . I don’t know.  Some gear shifted in my head or something.  He was again complaining of pain in his ribs and back when he tried to breathe deeply, he was coughing a weak but rattly cough and I just though, enough.  He’s not getting better, and he might even be getting worse.  What if he’s got pneumonia?

So I talked him into going to Urgent Care because I knew they could do a quick chest x-ray on the spot.  So he drove himself to Urgent Care and it was closed.  Of course!  He came home and we hunkered down, prepared to ride out yet another night like this.  Through all of this, I was texting updates to my friend, who used to be a nurse, and she mentioned the word “embolism,” and I went into instant panic.  “ER, Michael.”  “No,” he said.  Who can blame the poor man?  He’s been to the ER so many times in the last two years that we’ve both lost count.  They recognize him on sight there!  “We’re going,” I insisted.  A friend/neighbor came to stay with the kids, and off we went.

Based upon his symptoms, the two things the intake nurse mentioned were pneumonia and embolism, neither uncommon post-surgery.  They got him into a bed in a cubicle, took a bunch of blood and a chest x-ray, and we waited for hours.  Finally around 12:30 a.m. the doctor came in and said that Michael’s white blood cell count was elevated, indicating some kind of infection, and the chest x-ray was inconclusive.  They were now going to do a CT scan of his chest and abdomen, and it was going to be several more hours of waiting.  I decided at this point to go home.  My friend has her own kids to look after and get to school in the morning, and I didn’t want my kids, the four youngest of whom were already in bed when Michael and I left for the hospital, to wake up and find both of us gone.

I got home around 1:00, climbed into bed some time around 2:00, and slept fitfully until a little after 4:00 a.m. when Michael called me to tell me that the CT scan had revealed multiple abscesses in his abdomen as well as “a touch” of pneumonia.  Fucking fuck fuck.

So he was admitted, again.  He’s on heavy-duty IV antibiotics, and they are going to attempt to drain the abscesses with a needle.  If this is not successful, more surgery is a possibility.  Also, he is, as I type this, receiving a transfusion of three units of blood because of the severity of his anemia.

I did not go back to sleep after that 4:00 a.m. phone call.  I laid in bed contemplating all of this, my whole body buzzing and trembling with stress and adrenaline.  I couldn’t decide what to do about school today, and the prospect of telling the kids that Dad is in the hospital again put knots in my stomach.

When the girls started trailing sleepily out of their room, I decided on the fly to try to keep everything as normal as possible and send them to school as usual.  How I was going to get them there in my exhausted state, I wasn’t sure.  For a few fleeting moments I thought maybe with the morning hustle and bustle, they wouldn’t notice that Daddy was missing and I could stall an explanation for later in the day.  And all through breakfast, the girls didn’t say a word about Daddy, and neither did I.  Then it was time to get the boys up, and right away they both asked where Dad was, being that the two of them were still awake the night before when we headed to the ER.  So, with dread in my heart, I gathered all the kids in the boys’ room and told them, as matter-of-factly but optimistically as I could, that Daddy is in the hospital.  I honestly thought I was going to throw up.  The horrified, bewildered look on all their faces, as they all said in unison, “AGAIN?!?” just about killed me.

So this is where everything stands for now.  Finn and I went to the hospital and hung out with Daddy for a little while this morning.  We are all tired . . . so very tired.  Voices are cracking and tears are spilling.  Hard times.

Rebound

Michael went to the doctor yesterday to have his fourteen staples removed (I don’t know why, shortly after his surgery, I thought he only had eight).  Monday marked two weeks since his surgery, and I have to say that his recovery has been very slow going.  He seems to be having a much more difficult time rebounding this time than he did from his big cancer surgery almost two years ago.  Both doctors he saw yesterday – the doctor who performed his surgery two weeks ago, and his oncologist for a regular post-cancer checkup – said that he is still suffering the effects of sepsis, and that’s why he is having such a difficult time recovering.  Do you know what sepsis is?  I had a vague idea, until I started researching it: SEPSIS.  That’s some very scary shit.  Extremely serious.  Life threatening.

It is still very difficult to wrap my head around the fact that in the hospital – a place one goes to trusting they will be taken care of and that every measure will be taken to preserve life and health – he was allowed to deteriorate to the point of sepsis, mainly due to what appears to have been inattentiveness.  It was a Sunday.  There was no doctor on the premises for that department, and for whatever reason, the doctor on call was not available.  Michael knew something was terribly wrong on Sunday as he lay in the hospital bed, and he kept asking to see a doctor.  I went to the hospital to see him Sunday afternoon and was very unsettled by the condition he was in, and I went to the nurse’s station and asked when he would see a doctor, and nobody seemed to know anything.  I was told that the doctor had been paged and was expected to be in at some unknown time to make rounds.  The nurses just increased Michael’s pain meds, and the doctor didn’t get to him until early Monday morning, and by then he was already septic and in dire straights.  Had his condition been taken more seriously on Sunday, had a doctor seen him and done surgery sooner, it could have been a less dramatic surgery, and certainly his recovery would not be so difficult now.

And the whole family has naturally been impacted.  Daisy is an emotional wreck – needing constant hugs, not wanting to separate from us, breaking down in tears over everything.  The other kids are acting out emotionally and behaviorally.  I’m wiped out.  Michael is here, but sort of not here.  He’s tired all the time and sleeps A LOT.  I’m trying to meet everyone’s needs and take care of mostly everything, and I admit it – I find myself feeling resentful at times.  And tired.  And emotional.

Such an ordeal for everyone, and one that could have been minimized.

It’s hard not to let my mind run away and imagine the what ifs – what if they had let him go for another hour or two?  What if he had died?  It was such a close call.

But he didn’t die, they did catch it in time, and for that I’m grateful.

But still angry.

What a Difference Two Years and a Battle With Cancer Makes

February, 2009 - shortly after his cancer diagnosis

April, 2011

I don’t want to belabor the whole cancer thing, because we’ve been trying so hard for almost a year and a half now to put it all behind us and get on with our life, but it has a way of biting you in the ass even after you’ve left (or tried to) the ordeal behind you.  Like an earthquake, cancer tends to send out aftershocks, and we’ve had a few – this latest one being the most intense.

I was really struck by how gaunt Michael looked when he came home from the hospital a few days ago (he’s looking better day by day, by the way), and the difference that has been made in the last two years.  If one is inclined to see silver linings, clearly he is at a much healthier weight now, and has adopted a healthier lifestyle.  Which is good, because I plan on keeping him around for a while.

Home

Michael was discharged from the hospital yesterday morning, eight and a half days after being admitted.  That’s longer than he was in when he had his initial cancer surgery, and the incision he has rivals that first one – a vertical slice about eight inches long running up the middle of his abdomen.  He lost quite a bit of weight in the hospital and looks gaunt.  He’s weak and sore and has quite a recovery ahead of him.  But he still went to Joey’s baseball game last night.  He’s determined not to miss a game.  Probably not the best thing for him to have done physically, but clearly what he needed mentally.

To say it’s wonderful to have him home sounds empty and inadequate.  All I know is that I feel complete with him here, and when he was gone there was a void.  When you’re faced with losing someone, it’s funny how all the little grievances you have fall away, and all that’s left is how much they mean to you.

Today, though, I feel a lethargy settling on me.  It’s as if the euphoria of getting him back yesterday has worn off and now I’m decompressing, processing what happened.  When he was in the hospital, it was survival mode, and I was running on adrenaline.  Just put one foot in front of the other and deal, because that’s just what you have to do.  It was hard, and I was scared, and seeing him all hooked up to machines and in pain was awful, but I don’t think I really let myself think about how bad it might be.  The truth, though, is that he could have died.  He was septic and his body was shutting down.  The doctor told him yesterday before he was discharged that had he not been young, he wouldn’t have made it.  So why did he languish in a hospital bed in no-man’s land all day on Sunday without seeing a doctor, while they just kept upping his pain meds?  He could have died.  A few more hours, and he might have died.  The reality of that, the gravity of it, it’s doing a number on me.

But he’s here.  I don’t want to be one of those people who sits around wringing their hands thinking their life is so hard.  There will always be worse circumstances, people who are faced with harsher things.  And yet, I can’t help thinking . . . how much more?  We’ve been though so much.  How much more?

Better

I made an executive decision last night that, sick or not sick, I was going to see Michael in the hospital this morning.  It’s been awful to stay away, and going did me a world of good (and hopefully it did him some good, too).  I curled up on his bed with him for a while, we walked the halls, talked and even shared a few giggles.  Ahhhh, just what the doctor ordered.

Michael is making steps towards recovery and coming home, but it’s slow going.  While I was there, some of his medical trappings were removed.  This is progress.  I also got to see his incision, which was also the first time he’s seen it, and it’s pretty significant – quite a bit longer than I had expected. It’s all put back together by I don’t know how many sutures and eight shiny staples.

The Waiting Game

An uneventful day as far as newsworthy developments.  I don’t even have any new catastrophes to report!  I guess the gods are smiling on us for the time being.

Michael is recovering at the pace he’s supposed to be recovering at, which feels very slow to us and I’m sure to him.  It’s really hard just waiting . . . waiting for him to be well enough to come home.  And it’s made even harder by the fact that for now I have to stay away because of my being sick.  And I rarely get sick!  The timing is just stupendous, no?

Daisy and Annabelle’s teacher, who was also Joey’s first-grade teacher, and who has also become a true friend, took the five older kids to the hospital to see Dad today.  (And she took them to the bookstore – and bought them books – and then out for ice cream!  It’s crazy how good she is to us.)  I know Michael was thrilled to see his beloved spawn, but apparently was only up for a short visit with them.  He’s still got pain and is easily tired.  And goodness knows those kids can wear a person out!

Anyway, I think the visit was good and bad.  I really can’t say how Michael is feeling about it, but I suspect it might have made him miss home even more.  Lilah and Daisy were apparently pretty freaked out seeing Daddy in his current condition, although by the time they got home, Lilah was fine.  Daisy, on the other hand, she is having a really tough time with all of this, and the visit may have made things worse for her.  Ever since Michael went into the hospital, she’s been mopey and very clingy, following me around like a shadow, needing constant hugs and reassurance, and breaking into spontaneous tears.  It’s hard to make a very sensitive, emotional six-year-old understand that Daddy will come home, that we just have to be patient and wait for the doctors to help him get better.

The other kids are doing surprisingly well.  Kevin has been a huge help, and he and Joey have been getting along famously, which I love to see.  There have been the usual skirmishes among all the kids, but for the most part there is a feeling of pulling together.

Today

No major developments to report today.  I woke up with a nasty cough and laryngitis this morning and got to feeling more and more fluish as the day wore on; I’ve had something coming on for a few days but had hoped it would go away if I ignored it.  Not so.  So unfortunately, I can’t even go visit Michael in the hospital now.  I was looking forward to taking the kids to see him today – which I think would do both them and him a world of good – now that he’s out of ICU, but that plan went out the window.  So I stayed home and finished cleaning up the garage and feeling a little sorry for myself and for us.

When I talked to Michael last night, he had developed a low-grade fever.  When I talked to him first thing this morning, he sounded awful and said he was having trouble breathing.  I got really worried – did he have pneumonia now?  I swear, one of my biggest worries at this point is that he’s going to develop some secondary infection or illness just by virtue of being in the hospital.  Anyway, I talked to his nurse later in the morning who told me that he is FINE, that his trouble breathing has to do with the pain from his incision.  She said he’s exactly on the path to recovery where they want him to be, so that was a relief.  I know they got him up and walking a little more today, so that’s good.  I’m so sad that he’s there alone with no visitors.  Apparently his doctor doesn’t think he’ll be home before Monday or Tuesday.

I miss him like crazy.  Even with a houseful of kids, there is a terrible Michael-shaped emptiness.  All the little things you take for granted become so magnified when they’re suddenly missing.  The kids miss him too and his absence is taking a toll on them.  I keep thinking about how Saturday started out as a pleasant, average Saturday.  We took the kids to the park in the morning, then I took Joey out for ice cream and sightseeing around town, Kevin went to a friend’s for a sleepover . . . never imagining that another smackdown was just around the corner.

We’ve had a tough time the last few months . . . coming back from cancer is harder and more complicated than a lot of people realize.  There have been a lot of factors putting a strain on things – health and financial concerns, depression and anxiety, conflict with extended family – and we’ve been faced with the fact that even the most solid of marriages stumble in the face of so much adversity.  We’ve only just started coming back from a pretty dark period, and now this, obviously a setback.  We’ll get through it, I know we will, but . . . well, it’s just hard.  Life is so unpredictable and often unfair.  I don’t want to crumble and become a bitter person.  I sometimes cry and throw my hands up and shake my fists at the injustice of it all, but I will not let myself lose sight of all we have to be thankful for.  Like friends who deliver food and flowers and booze to my house.  Seriously, so much love, so many good people.

We’ll get through this.

I Wanted To Cry, But All I Could Do Was Laugh

Okay, first?  I’ve have a cocktail or two under my belt.  Just sayin’.

So, really, what else could possibly happen?  Well, a burst water pipe that floods the garage and necessitates an emergency call to a plumber, that’s what.  I went downstairs to the garage for something this afternoon – I don’t even remember what, and I almost never go down to the garage because it creeps me out so much – and noticed water pooled on the floor.  My first inclination, in all seriousness, was this: “If I turn around and go back inside and pretend I never saw it, it’ll be like it’s not actually happening.”  That thought lasted for approximately 3.75 seconds.  But alas, maturity and responsibility won out, and I was forced to call Michael at the hospital – that’s right, I called my poor, recovering-from-major-abdominal-surgery-zoned-out-on-pain-meds husband like the ninny I really am and said, “What do I do?”  He instructed me to turn off the main water line and see if there was a loose connection on the water heater, which has actually been prone to leaking of late.  So I went back downstairs to investigate further, whereupon I discovered water pouring out of a hole in the wall above the water heater in the dark, creepy little utility closet in the garage, home to the rat ghosts.  My next thought?  “Fuck.” Clearly I had to call a plumber stat, and I’m already mourning the thousands of dollars this is going to cost.

The plumber, someone we’ve used before, was here in ten minutes (cue the Lone Ranger music).  Turns out it was this that caused the torrential flooding:

Wait, let’s get a closer look –

See that little pinhole?  That’s the sucker that wreaked havoc on my garage!  A corroded copper pipe.  Anyway, ended up only costing a couple hundred to fix, not a couple thousand.  We do need a new water heater, but that’s not the immediate concern, so.  It could have been worse!

So Kevin and I spent the afternoon dragging everything out of the flooded half of the garage (why, oh why, does my husband keep so many empty boxes?!?), and I swept as much of the standing water out as I could, and hopefully everything will dry out in the next day or so.

You know that saying, “When it rains, it pours”?  It’s become a comedy over here.  I mean, what’s next?  Maybe my truck will break down or one of my kids will break a bone.  Bring it on!  I’m feeling feisty.

I am, in all seriousness, in surprisingly good spirits.  I have so many good people in my life, and they’re all converging on us with food and offers of help, and just plain love.  I am a very lucky woman.

I saw Michael this morning.  when I got to his room, they had him sitting up in a chair, and while I was there, they had him get up and walk a little for the first time since surgery.  He’s doing as well as they expect him to be doing.  He’s still doped up and faded in and out while I was there. Later in the day, after I left, he was moved out of ICU and back to the regular floor, so that’s a sign of progress.  He texted me later that they put a PICC line in, which felt like a setback to me, as it harkens back to his cancer treatment, but in reality, I guess this is apparently the new thinking, that PICC lines are better than long-term IVs as far as risk of infection, etc.  I talked to him on the phone a little while ago and he’s developed a low-grade fever.  I’m trying not to worry.  He’s in good hands, right?

I miss him.

Out Of The Woods

I don’t know how long Michael was in surgery this morning, I just know that I got a call from his surgeon sooner than I expected to.  The surgery went well.  They located the obstruction and removed it, as well as some tissue that had died as a result of the obstruction, and put him back together, good as new.  After surgery he was taken back to ICU on a ventilator and various other accoutrements.  He’s been through a pretty major trauma, and his body needs to rest and heal, so a machine would breathe for him for a while, and various other contraptions would take care of various other tasks for him, so really, all he has to do at this point is enjoy the vacay.  Ha.  Ha.

I went to see him this afternoon.  Remembering how difficult it was to see him after his cancer surgery, whereupon I proceeded to have a sobbing-screaming-pounding-with-my-fists breakdown in my truck in the parking structure of the hospital, I steeled myself on the drive over this afternoon for how he would look, pale and helpless as a baby, hooked up to all kinds of monitors and tubes and whatnot.  It wasn’t going to be pretty, and I was going to suck it up and be strong.

So I strode – that’s right, strode – into his room, took one look at him with a giant tube down his throat breathing for him and various other stuff taped across his face, lying there unconscious, and broke down.  Of course.  The staff was so kind, really.  They must see this all the time, various next of kin coming in and falling apart at patients’ bedsides.  I was doing the hiccupping sobbing thing, and someone discreetly called a social worker to come talk to me.  She took me into a little conference room, sat me down with a box of tissues and proceeded to ask me all kinds of kind, caring questions while I bawled my little heart out.  She asked me about family.  I hate that question.  “I don’t have family.  We’re estranged.”  This is usually a fork in the road in new relationships – they either get it, or they don’t, and if they don’t, you can see a wall of judgment go up.  She said, “I’m estranged from my family too, don’t worry about it.”  Ahhh.  Okay, maybe she was lying to make me feel better, but I’m totally okay with that.

Michael’s car is still parked in the ER parking lot, since he drove himself there Saturday night.  I was looking for his keys and discovered that everything he came into the ER with – his clothes, his keys, his wallet, his phone – were missing.  His nurse started making phone calls to try to track it all down.  Then a doctor came in to look Michael over.  This was during my crying jag (maybe he was the one who called the social worker?),  and it came to his attention somehow that Michael’s personal effects were missing.  I told him the nurses were trying to track it down.  He said to me, “Let’s go find it. Come with me.”  And I followed him out and to the unit where Michael was yesterday.  He stopped at the nurses’ station and said indignantly, “Where is the charge nurse?”  He explained that my husband’s things were missing, in a how-dare-you-cause-this-woman-any-additional-anguish-by-losing-her-husband’s-things sort of manner.  I was a little embarrassed (because I really don’t think it was anyone’s fault), but also grateful.  One of the nurses at the station pulled a bag from behind the desk.  “This it?” she asked.  Yep, there were all his things.  Phew.

Anyway.  Michael was in and out of consciousness.  They actually took him off the ventilator while I was there, so that’s a good sign.  He’s on major pain meds and can have nothing by mouth for several days.  The surgery he had was very much like the surgery Finn had at birth, so a lot of this looks very familiar actually.  It’s hard to see someone you love like that – diminished, helpless, in pain.  Because he was intubated, he had a lot of difficulty talking, but he wrote on a piece of paper for me, “I’m here,” and “I was scared.  Shitless.”  That pretty much says it all.  I would have given anything to crawl into bed with him and just stay until he’s better.  But of course, I couldn’t.  I had to get back home to the kids.  And that’s tough, being torn like that.

He’ll be in the hospital for several days, possibly a week.  And after another major abdominal surgery, I imagine he’ll need several weeks to recover.

Friends are rallying around us, as they have in our times of need before.  Another crisis survived.  I am grateful.