Health Update: Limbo

Enough people have asked me about my medical situation that I feel I should just post another health update.  Anyone who reads this blog for posts about violin making or parenting or cakes and feels this is too much information, please read this, or this, or this instead, and I'll meet you at the kitchen remodel post soon.

To recap, I've been struggling with granulomatous mastitis for over a year.  It may be gone, but it's hard to tell.  I have been on and off steroids since December.  When I went off them the first time a few months ago I thought we were done, but then my breast started to flare up and hurt again, so back on them I went, and at a higher dosage for longer than the first time.  The steroids weren't pleasant but they did the trick.  I'm off them now and hoping this time it's for good.  Generally people with this condition suffer it for about a year to a year and a half before it burns itself out, and it's been a year and two months, so maybe I can start really healing.

Beautiful Day for a Biopsy

Well, it was a beautiful day, anyway.  We've had a gorgeous week here, all in the upper-sixties/low-seventies.  I would have loved to have gone biking along the lake, or even spent a nice hour sitting outside, but I've had to be content with simply having my front door to the store open while I admire the sunshine from my workbench.  Quinn and I took a walk the other evening to pick up things at Target and marveled the whole way that we didn't need jackets.  I love a warm day in fall.

Anyway, I decided I really didn't have much choice other than to just do the next biopsy.  It makes sense to rule out cancer, and the whole thing has been going on too long not to try to find an explanation.  But I dreaded it.

It hurt.  I cried during the procedure because of the pain.  I cried at the mammogram afterward because... I'm not sure why.  I was feeling emotional I suppose.  I hate crying in public, but once you start it's hard to stop.

No Way to Make Some Things Pleasant

I'm going to start off by saying I'm fine.  I'M FINE.  This is not a plea for sympathy.  In fact, sort of the opposite, as odd as that seems, because I'm finding this easier to write about than talk about with anyone.  I don't want to talk about it, but I still have thoughts I need to sort through, and that's really what this blog is for.

This week I went for a followup mammogram.  The one I got just after my birthday was with a new "3-D" machine and it apparently sees more than the old machines, so the new pictures essentially became the new baseline, and they needed to look at some things more closely.  Most of those things turned out to be cysts that they are not worried about.  One small nodule requires a biopsy to be sure it's benign.

Not Interested in Dying

We got an email from my dad last night.  My dad doesn't email very often.  He used to write us a great deal, most often on post it notes that accompanied packets of articles he'd hand selected for us.  Sometimes there was a lot crammed onto the post it notes, but usually they were brief.  My favorite was one that read: "Dear Kory, This is more than I wrote to your brother, Love Dad."  His emails are brief as well, seldom more than a half dozen lines at best, but always both poignant and funny.

Last night's email was particularly powerful.  He reminded us that we had reached the one year anniversary of a doctor telling my mom in the hospital that my dad may not make it through the night.  But he did.  And he's still around a year later having settled back in at home, vacationed with us at the cottage, and seen his grandchildren all grow that much taller and more interesting.  If his cancer returns there is nothing left to be done about it, and things are still complicated (particularly from my mom's end), but he's home and getting around under his own power, doing what interests him, and mostly just being my dad.  When I think about the nightmarish hospital stays from last year it's hard not to marvel at the difference today.

Dad also mentioned a recent obituary in the Times that said the deceased "had no interest in dying" and he probably didn't either.  I'm glad that's nowhere on my dad's to do list.  Because I need my dad.

Aren't Roller Coasters Supposed to Be Fun? (Babble)

I’m hoping this is the last update about my father in the hospital.  I’m exhausted by the whole thing and I’m not even directly involved, so I can’t imagine how my mom is feeling at this point.

My dad has stage four cancer, and the only treatment possible was twelve weeks of chemo.  He did well with his treatment until the last round when they put him on a drug called Xeloda and it sent him into the emergency room.  He nearly died.

His journey within the hospital, as I explained it to my kids the other night, was that:  He started in the ICU, improved enough to move to the oncology ward, improved further and got to move to rehab, then a blood infection sent him back to the ICU, and now he’s working his way back up to rehab.  It has been a nightmarish few weeks watching my dad roll up and down from a sleepy and delusional state to seeming like himself, from pain to relative comfort, from people saying we should prepare to let him go to him reading the New York Times again and drawing in his sketchbook.  The news when they rushed him back into the ICU was so dire that I packed my car and made arrangements to drive out to Detroit, but my brother kind of beat me to it.  He flew in from New York and we decided it made more sense to tag team if possible.  He emailed photos of dad’s rapid improvement, and promised to call if he honestly thought I needed to go there.


The most recent picture I’ve seen of dad he was sitting up and smiling, sketchbook in hand, somehow managing to bring a touch of dignity to his silly looking hospital gown.  He looks like my dad again.  That wasn’t true when I was out there a few weeks ago. The hope at this point is he goes back to rehab where they will make sure he is strong enough to return home.  If I don’t write otherwise, just assume that’s the case.

I’m sick of this roller coaster and I’m glad to get off for a while.

On the Mend (Babble)

Thanks again to everyone who expressed kind thoughts about my dad in the hospital.  He’s still there, but he’s doing better.

When he was originally rushed to the emergency room they only gave him a 50-50 chance of surviving the weekend.  Now he’s on the mend.

My dad is an interesting man.  He’s gentle, educated, and kind-hearted.  He loves art, his books, his newspapers, and most of all his family.  It’s been painful to watch him suffer the indignities of an extended hospital stay.

However, he’s now in the rehab section, trying to put on some weight and gain enough strength to go home.  He is done with chemo.  With luck it bought us a few years of time, but my mom has decided she doesn’t want to take him back to the hospital again.  Living with stage four cancer is hard enough without the added trauma of that environment.  I for one don’t ever want to see the inside of that hospital again.


So now we wait, and hope, and figure out what life is like now with whatever new limitations dad may have based on his health.  I have my fingers crossed that maybe we can still eke out a trip to Paris if dad is up to it at some point.  Or even just a visit to finally see our new home in Milwaukee.  Either sounds grand to me.

And he just might make enough of a recovery for that.  Because my dad is tougher than one would guess.  He survived both a broken wrist and broken leg in India a dozen years ago, and had to fly home with a cast on his arm but without any treatment to the leg other than a few pain killers.  And every time I’ve seen him in the hospital since then his determination to simply get home is almost tangible.  Even in his most drug and pain induced haze I could see him fighting.  It’s not the kind of fighting people who don’t know him would easily recognize, but my mom and my brothers and I could.  There is nothing he wants more in this world than to be at home with my mom, among his books, working on a drawing in his sketch pad, and hoping one of his children may come by.  I can’t wait until he’s returned to that place.

In the meantime, my old neighborhood has power again, and the dozens of tree removal trucks have been working non-stop to remove evidence of the storm.  My mom sent me some of her pictures of the aftermath from the weekend I was there (still can’t believe I forgot my own camera), so if anyone is curious to see some wind shear destruction, here’s a little slide show:

Whirlwind (Babble)

How was your Labor Day weekend?  Mine was surreal.

I drove out to Detroit and back to visit my dad in the hospital for a couple of days.  My dad didn’t resemble himself, hospitals are strange, I think a tornado touched down in my parents’ neighborhood (even though the weather people there kept calling it a wind shear but I don’t think I buy that), the power was (and still is) out so we came back every night to a dark house, dozens of hundred year old trees upended pieces of sidewalk and smashed garages and punctured roofs making the whole area look like a tree-seeking bomb hit it.  (What a time to forget my camera.)

So.  That was a lot of stuff.  And now I’m home and trying to process it all.

I started my trip in our twelve-year-old Hyundai, minus the radio that was stolen out of it last week.  (That’s the third time.  People keep asking if we lock the doors to the car, but I’d rather lose the radio than have the window smashed and lose the radio, so no, we don’t lock the doors.  I guess with the newest one we’ll bring the radio’s faceplate indoors each time.)  I brought along an iPod and listened to various podcasts on the insanely boring drive that is the trip from Milwaukee to Detroit.

I stopped in Chicago on the way to say goodbye to my brother and his girlfriend before they moved to Germany.  It was too short a visit.  I don’t see them enough, and I don’t realize until I’m with them again how much there is to say.  I wish we’d had more time, but for some things there is never enough time.


I arrived in my hometown of Pleasant Ridge, MI to find dozens of downed trees.  My mom called to warn me ahead of time that there had been a severe storm and there was no power, so I came armed with my favorite flashlight and a headlamp.  It took me a while to find a path to the house.  The normal route was blocked by fallen power lines and trees, as were several alternate routes, but eventually I found my way.  I think our specific block and a couple on either side of it got the worst of the damage.  It’s both impressive and sad.  I dropped off my things and headed to the hospital around dinnertime.

My dad was awake when I arrived, and glad to see me, but he wasn’t awake for very long.  He’s weak and thin.  Swallowing anything causes him enormous pain.  He fades in and out.  He winces in his sleep which is hard to watch.  He’s disoriented.  He just wants to go home.

The main thing I was able to provide for my dad in the hospital was music.  It was too hard to read to him or carry on a conversation because he was seldom conscious for more than half a minute at a time.  I put a mute on my instrument to keep the volume lower and played a lot of Bach.  My dad loves Bach.  There were times I was sure he was sound asleep and I kept playing, only to hear him say without opening his eyes, “Very nice” when I got to the end of a piece.  I don’t think there is any applause this season that will mean as much as those quiet words.

There are several good things about playing live music for someone in the hospital; it blocks out all the beeping and chatter that is a constant part of life there, you can sleep to it or actively listen and it’s all fine, and I think it help set my dad apart as a patient.  Everyone in the oncology ward said they liked hearing the music, and I would see people pause in the doorway as I played.  (One nurse was even proud to have figured out I was playing a viola, not a violin.)  I think anything that draws attention to the fact that my dad is loved and adored gives him an advantage in an environment that is dehumanizing, and now even the people who don’t deal with him directly know he’s the man whose daughter plays music for him.  He’s not just some old man hooked up to a million tubes.  He’s special.  He’s my dad.

Mom and I didn’t stay until the very end of visiting hours each night because it helped to get back to the house while there was still some natural light.  Having the power out at home was such a strange added twist to the trip.  We walked around the house in headlamps and never got over the habit of flicking the light switches when we walked into certain rooms.  We could still use the stove top if we lit the gas ourselves with a match, but cooking in the dark is weird.  My first night home it was warm enough we went for a long walk.  (The temperature dropped by about thirty degrees not long after I arrived and I hadn’t packed for that.  Mom gave me a jacket but for the most part I was really cold in Michigan.)

It’s hard to describe what the storm did to my old neighborhood.  No one was hurt, and most of the houses were spared, but the few that got whomped by trees really got whomped.  Several garages were crushed, as were a few cars.  My parents’ property was spared, which is good because I don’t know how they could handle one more thing.  With luck insurance will do what insurance is supposed to, and I’m hoping nothing too personal was lost by any of the people who experienced damage to their property.  It’s a lot of expense and inconvenience but probably not the end of the world for most of the neighbors.  The thing that has changed is the general look and character of the street.  The trees that came down were about a century old, most of them on personal property, not city trees.  (Although the ones by the street that came down ripped up the sidewalks, which was something to see.)  There is a lot of light suddenly where no one is used to seeing it.  Everyone’s view has changed.

I’m glad I was able to be there with my mom at such a strange and trying time.  It felt good to make her laugh.  I made her go with me into the chapel at the hospital and I taught her how to play Heart and Soul.  The place was empty, and my mom looked alarmed when I sat down at the piano because she thought we were being disrespectful.  But to paraphrase Kurt Vonnegut, all music is sacred.  And music makes things better so I didn’t feel for a moment we were doing anything wrong.  I bossed mom around on the keyboard until she was able to poke out enough of a bass line to play along with, and she laughed and wiped at her eyes.  It was worth the drive to Michigan just for that.

My dad was doing well enough when I left late on Tuesday that I felt it was okay for me to go home.  The medication that sent him to the ICU (Xeloda) had horrible effects on his body and he nearly died, but the ever encouraging and kind Dr. Pearlman said we’re past the hump and dad was improving.  I trust him.  All the nurses were excellent, and I am forever impressed at how caring yet firm the physical therapy people are.

On the downside, some people in hospitals need to remember that discussions about life and death are not casual events for many of us.  One well-meaning young doctor rattled my mother badly in the hall when she stopped us on the way to lunch to ask if we had orders in place about whether or not to revive my dad if he got suddenly worse.  She saw a frail man with stage four cancer and was calling things as she saw them based on her everyday experiences, but she doesn’t know how hard my dad wants to fight.  She just kept saying, “Because he’s really very sick, and if you’re not here we need to know whether you want us to let him go if his heart stops.”  My mom was flustered as she explained that at this point in time we’re quite sure my dad would want to be revived if possible and of course she’d signed papers to that effect. 

It was not appropriate to approach us in that way.  We had been feeling okay on our way to lunch, and that doctor destroyed our equanimity for the day.  There was also a palliative specialist who talked to my mom only in terms of dad never leaving the hospital and how to go about pulling the plug.  I hope we never see either of those doctors again.  I know there is a time and a place for those important discussions, but they shouldn’t have been sprung on us when what we needed was reassurance.
 
On the drive back to Milwaukee I thought about the trees of my childhood.  When I was little, Pleasant Ridge was filled with huge, majestic elms with limbs that spread out like fountains shading all the streets.  When I was nine, our neighborhood, like much of the nation, was struck by Dutch elm disease.  We lost all of those trees.  The neighborhood seemed unbearably bright for a long time.  But the truth is that there were many smaller trees in the neighborhood that could suddenly reach for the light.  I looked around my old street before I left, past the endless rows of tree removal trucks and wood chippers, the debris in the streets, and damaged maples with what was left of their splintery limbs poking at the sky while awaiting chainsaws and cranes coming to take them down.  I saw the new generation of smaller trees, some of which had grown up leaning odd directions just to find some sun.  The neighborhood will be different, and for a while it will be unbearably bright.  But now the new trees have a chance to grow into new roles. 

It won’t be the same, this new view, but for some it will be the view they grow up with.  The new view will become home.

Don't Suffer Before You Have To (Babble)

I worry.  I’m not obsessive about it and I enjoy my life, but I like to feel prepared.  Most of the time when I worry, it’s merely a way of analyzing a concern and getting a jump on addressing it.  If I didn’t worry about my kids getting cranky on a long outing I wouldn’t have thought ahead to bring a snack.  Many moms in particular spend time worrying as a kind of preemptive strike.  Worry now prevents a meltdown later.  As long as it doesn’t drag you down, worry can be constructive.

But there is a limit.  Worry with no endpoint can be debilitating.  If something is too large or unsolvable worry can gnaw at you until you are ragged.  And if worry stretches on too long it hurts.

My family found out this week that my dad’s health is in trouble.  He went into the hospital on Christmas day, and recently had surgery.  I don’t have enough significant details to write about even if they were mine to share, but suffice it to say we’ve all had to stop and shift what we are doing to accommodate this new situation.  My brothers and I are all looking at what responsibilities in our own lives can be set aside, and when, so that we can coordinate a tag team effort to go out to Michigan and help.  I’m in line first for when dad gets out of the hospital.

My first reaction to the news that my dad was in pain and my mom was possibly overwhelmed was akin to panic.  There is nothing more upsetting than feeling helpless, especially where loved ones are concerned.  A serious situation deserves a serious response.  And I am in a different state with nothing to offer from here and it’s frustrating and scary.


But the night we got the news my brothers and I tried to communicate using Skype.  The group conversation was too awkward, so Barrett Skyped me directly.  He’s in Germany at the moment, and it was really the only way to talk to him.  We said the couple of important things that needed saying, and then we started to laugh.  Not in any riotous kind of way, but Quinn was lining things up on the bed and Mona kept appearing and calling Barrett the wrong name the way she usually does, and, well, seeing my brother makes me happy.  So we laughed a bit.

I was really conflicted about that.  It seemed disrespectful of my dad’s troubles.  If his pain mattered to me, how could I laugh?

The truth is that life is more complicated than that.  I remember crying during my first miscarriage and feeling as if I would never smile again, but at some point you can’t keep crying.  Eventually you sleep and you eat something and you get dressed and move on.  And if you have small children as funny and sweet as mine, you laugh.  Whether you want to or not, you laugh.  Because it’s disrespectful to ignore that side of life, too.

The morning after I talked to my mom and my brothers I got an email from my friend, Sarah.  She has had more than her share of dealing with long term illness and hospitals, and she gave me practical advice based on her experience.  All of it was interesting and insightful, but at the moment the most invaluable thing she said was, “Don’t suffer before you have to.”  Because if a fight is long you can burn out on suffering and not be useful.  She also advised me to not turn away humor when it presents itself.  A good laugh is sometimes the best thing.

This has been immensely helpful to me.  I feel as if I’ve been given permission to laugh.  I didn’t realize I needed that until it came.  The same way it was all right to enjoy the company of my extended family at my grandmother’s funeral, despite the sad circumstances, it’s okay to laugh with my brothers even if our dad is sick.  When I think about myself when I’m sick, do I prefer it if my kids are in some kind of mourning because I’m in bed, or giggling together down the hall?  When my kids are happy my world is better.  I’m still someone’s kid. I can’t imagine my dad wouldn’t choose the sound of his own children laughing together over our worried mutterings.

So when I need to cry I will cry, but if I feel like laughing I will allow that to happen, too.  Because if I didn’t, what is the point?  Of anything?  I will not suffer before I have to.  And I will worry in small doses–just enough to keep the meltdowns at bay.