love

Dear A at Playing the Hand I was Dealt was just dealt a really bad card recently.  Her sweet kitty Moush Moush has had a recurrence of a rare form of cancer.  I know this is not a high traffic blog, but for anyone out there with even a bit of spirituality, good will, love of animals, or just plain old love, send it A’s way for her and her dear Moush Moush.

I’m posting pictures of my kitties.  I grew up in a cat household.  Ok, it was also a crazy house too, but there were cats.  Thank god there were cats.  Of the many cats we had, there was one who was dearest to me.  My cat.  With a silly name that only a 6 year old would give to a cat, Muffin.  Muffin was white with grey saddle markings with faint ringed stripes on his tail and more evident stripes on his knees.  I called them his knee pads.  He had a small grey dot on his face too, a sort of beauty mark.  He was so precious to me, born on my sleeping bag after his mom got herself knocked up shortly after the blizzard of 78 (oh yes, we were aware….the event was held in my backyard in broad daylight and was quite euphemistically referred to as “Rocky’s Wedding”).

old black and white photo of girl watching kittens nursing.

Baby pictures, Muffin and siblings.

old photo of white and grey cat

In his prime.

After Muffin died, I did not think I would want another cat.  I can’t.  too heart broken.  Then this beast came into my life.  Max. I thought he was full grown when I got him but he just kept growing.  He was huge in his prime.  Not fat, just LARGE.

orange and white tabby cat backlit on couch

My beautiful Max.

Max was with me for 16 years.  He died after being ill for a long time.  He was a trooper, purring through being sick.  I learned that from him.  After Max died, I really did not want another cat.  Seeing other cats made me cry, and the thought of getting another felt like a betrayal to his memory.  Then, it was christmas.  And it was going to snow, the weather forecasts called for blizzard conditions with lots of snow and high winds there in my coastal New England hometown.  And there had been this stray who we met when Max and hubby and I had moved into the neighborhood just a couple of months prior….but I hadn’t seen her for a while.  I’d been very absorbed with Max’s illness, and then after I hadn’t been up for going out hunting for the stray.  And she had stayed away.  So on Christmas day, after dinner, my sister and I went out looking around.  I half hoped we wouldn’t find her, that she had already found a home.  Nope.  She came bounding up with her crazy sustained meow while running.  Her hallmark.  How you always knew she was coming before even seeing her, this bouncing “aaaaaaaaaaaaaahhhhhhhhhhnnnn” that she did.  Hubby and I even had taken to referring to her by this as her name.  “Saw ‘aaaaaaaahhhn’ outside just now.  Gonna go sneak her some food.”  The next day, after she’d spent the night in the basement, then worked her way up into the house, we decided to name her.  We tried out different sounds on her.  She seemed to respond to the ones closest to her hallmark meow, so we called her Anya.

photo of brown tabby cat resting

Very skinny stray, enjoying the crap out of my couch during a Christmas blizzard.

Despite looking calm in the picture above, Anya spent the first few weeks pretty edgy with us.  She started warming up to me after my hysterectomy.  I was home for several weeks, and she had me all to herself.  She’s still jumpy if there are too many humans moving around at once, but she’s becoming quite the little housecat.

None of my cats has replaced the other in my love.  They have each been special in their own way.  I know that when Anya passes, I will get another cat.  We’d like to get another now, because I think it’s good for cats to have friends.  And I think it’s good for people to have cats.  And there are plenty who need homes.  So maybe Anya will get a little brother at some point (if my husband has his way).  I have love to give and I will give it.  It hurts sometimes too, but I won’t let this stop me from looking for the joy I know they bring into my life and the warm and affectionate home I can provide for them.

orange and white tabby cat smiling

Happy Max, Fall 2006

So say a prayer, a spell, a chant for A’s girl Moush Moush.  Wishing her love and healing and time with her mom.

Family time

My sister’s birthday was yesterday.  Although we haven’t been speaking since 2011, her birthday is not meaningless for me.  We had been very close all of my life, save for the periodic episodes of her deciding not to talk to me.  Those started after I got sick(er) and increased in frequency as the years went by.  The first one was in 2005, when things really took a turn for me.  It was a tough year, marked by a bad break up of a long  term relationship (in part because the guy couldn’t handle being yoked to a sicky), a transformation in my migraines to daily headaches, the addition of vertigo, massive weight loss from the then recent state change in my gut, and the onset of debilitating hip pain which now just comes and goes.

The next time my sister stopped talking to me was when I was un/underemployed after leaving grad school due to the inability to manage my health without academic accommodations.  And then most recently, this.  This is the longest period so far, coming up on 2 years.  We’ve had one short facebook chat, around this time last year, when I stumbled upon a news story in the local Big Northeastern City Big Newspaper where our mother was interviewed about her having come to the catholic faith late in her life.  The writer of this piece wanted to show how a parish was still growing despite the sexual abuse scandal that has been sweeping the catholic church for years now.  I don’t know if my mother was put forward by the parish leadership or if she self elected to tell “her story” but somehow she ended up as one of three people interviewed for it.  Her “story” was that she felt bad seeing the effects of the abuse and identified with the church leadership because there had been abuse in HER family and she didn’t know about it until too late and now, like the catholic church, had to deal with the mess.

Yes, she did.  My mother did liken herself to the pope.  And she also did completely and so publicly revise my family’s history – most notably with regards to her knowledge and the timing of that knowledge.  She knew plenty early to do something to stop it from continuing, and she didn’t.  The person who told her was my sister, as a very young child.  My mother knew, and she did not take steps to remove the abuser from our home or to protect us from him.  And so the abuse continued for years.

I wrote a scathing letter to the reporter.  Because she didn’t disclose the relation of those “abused” in my mother’s story, I don’t think the reporter technically violated privacy laws.  However, she acted unethically and I was sure to let her know exactly what I thought of that.  Before sending in this letter, because it disclosed some details of the abuse and my family’s history, I wrote to my sister and told my little brother.  See, that’s what you’re supposed to do before you start airing family’s dirty laundry in public.  They were both ok with what I wrote and with my sending it in.  But aside from that interaction, I have not had any conversations with, emails between, or sightings of my sister since late Fall 2011.

photo of boston from beach

4th of July, from the beach in my hometown.

This time, we stopped talking with a bang instead of the usual inscrutable random reason, like “you rolled your eyes when I said X during conversation Y at Christmas!” (2005).   This time, I blew the hell up.  It was related to health stuff.  I’d spent the day in the hospital, a day that was supposed to be a vacation day that I was going to spend with her.  The day after Halloween, and I had been looking forward to it for months.  But I’d had chest pain for days, that just kept getting worse.  Called my doc  after the weekend was over and was told “go to the ER!”  I hate that.  I won’t do that again, but I did it that time.  My sister took me, didn’t have to but she offered.  But I could tell she didn’t want to be there, stuck in the ER with me appearing not to be ill except for occasionally flinching when the pain gripped my chest.  So I told her if she wanted to go she could.  She did.  And fucked off for a while.  When time came to pick me up, I called and got no answer a few times.  Finally I got her, she was doing dishes.  She picked me up and instead of going straight home where I could rest (because I got speed and steroids in the ER and felt like shit), we had to stop at her house and finish doing whatever she was doing….her house was warm.  Bright.  Difficult.  Then to my place, where she did her laundry (I offered, but I had figured she’d maybe at least start it during the hours I spent in the ER).  And then the family bullshit.  She hadn’t been talking to my brother for a while at that point.  They’d had a fight.  She was supposed to see him that night for the first time in a while.  And she wanted to strategize with me I guess.  Talk about it.  Analyze it.  In the weeks before this planned event, she had tried to engage me in similar discussions.  I had told her that I did not want to be in the middle of her and my brother again.  That I hoped things worked out and they could reconnect but that I was not going to mediate.  I told my brother the same thing.

That night, in the course of this discussion, I tried saying this again.  And god I was so tired and so sad about my day being blown to shit.  And about not being able to do the things I wanted to.  My guard was down and my emotional resources were just gone.  And she decided that my brother and I had been conspiring against her, money was involved (tangentially, I thought but not for her).  She started going into her seething rage mode, tight mouthed and snippy.  The one that I, by that point, knew marked the start of a several month’s silence on her part.  I was panicky about this, those “no talking” times hurt, as I am pretty sure they were designed to do.  Then I got pissed off.  How dare she drop this in my lap, and then especially.  Why did it always have to be all about her and her tragic life?  And I got snappy with her.  She was going to leave in a huff, as she does before not talking to me for months, and seeing that this was where things seemed to be going, it was like a spark for what – that day – was a very short fuse.  If she’s going to act like my having a bad reaction to her bullshit is a monstrosity, then why do I hold back?  Why hide the rage and frustration that I feel about my health and my life getting so small, why hide how much it invalidates and demoralizes me when she sits there telling me all the things I should do, or could do (if only I’d stop playing sick apparently)….why hide how angry it makes me when an occasional failure to treat her with the delicate kid gloves she requires results in earning her apparent spite and condemnation? And so this time, I really blew up.  And while I’ve missed my relationship with her, I have not missed the relationship we had had for the last few years.  What I missed was one that had been gone for a while.

In the very early morning of her birthday, I woke up screaming.  That was 1:00 AM July 4, and my throat still hurts.  It was a lot of screaming.  It was a bad dream.  It involved illness, my mother, my sister, so much pain – both physical and emotional.  At the end of this horrible dream, I was being held down and hurt horribly, and woke up screaming.  Woke up my husband, who – god bless him – tried to calm me by holding me tight.  Not a good idea.  It took at least a half hour for me to stop crying after finally being able to articulate that he needed to let go.  Crying partly about becoming combative with him in my confusion, partly from the remnants of rage and horror, and partly from the continuing physical pain which rapidly became very real when my too tight muscles and rigid tendons were locked in his arms.  We finally got up and came downstairs, smoked, and recovered.  I told him about the dream and I said I was really sorry for throwing elbows while he was trying to comfort me.  I explained that if I need to be held after  a dream like that (they happen about 2x a year, more during stressy periods or holidays and family birthdays), I will tell him.  He was deeply apologetic for holding me like that, he said he had only wanted to comfort me and stop me from getting hurt – which I really do get.  When someone who dislocates is thrashing violently (not to mention screaming like they are being stabbed), it makes sense to want to hold them.  I told my husband that it was a good thing my parents lived far enough away to be inconvenient for me to drive over there and just start slapping.  If someone’s going to get elbowed in the face because I continue to suffer the ill effects of a broken development, it should be them.

In the late morning of the 4th, my brother texted me that my uncle died the night before.  This is not a man I knew well.  This is the second husband of a once favorite aunt.  Favorite of us kids, not of me specifically – she is my brother’s godmother and while she and her first husband made us all very welcome in their home, they had a special bond with my little brother.  Went spent a lot of holidays with her and her first husband.  He was a kind man who, even after getting sick with liver cancer, would try to be as fun as he could for quite some time before the depression and physical illness robbed him of that.  They had been very much in love and he had died young and rather suddenly.  Lost weight, got jaundice, got diagnosed, died all in a few months.  It took my aunt a long time to recover some footing from this.  Finally, at quite a later point in life, she met a man who she adored.  They quickly married.  I met him with her at another uncle’s funeral in 2007.  She seemed so happy, despite the sad occasion, when she spoke of this man and looked at him.  I was happy for her. A few years later, he had a stroke.  Then another.  A pretty bad one.  The next time I met him, last year, he had significant aphasia.  He could speak but it was with significant effort.  I found out from little brother that a few months ago, he had deteriorated further, another stroke, and had been transferred to hospice/rehab.  Basically, it was rehab but the staff and my aunt knew that it was really just comfort measures and palliative care.

The practical upshot of this is that I will be seeing the family quite soon for the memorial services.  What a week to have to see them.

mistakes were made

I just finished reading a chilling essay by an ER doctor at a local B.A.T.H. relating his experiences with a hospital’s massive, life ending errors during the care of his mother.  The article is titled As She Lay Dying: How I Fought To Stop Medical Errors From Killing My Mom, published in Health Affairs.

Here’s the part that moved me to tears:

“I wish I’d done more at that point—raised hell, insisted on waking both my mom’s oncologist and the hospital’s intensive care doctor at home, demanded that they come to the hospital. Instead, by that point I felt lost and powerless. I’d already insisted that my mom be moved to the ICU. What would happen if I made additional demands? Would the ICU nurse start avoiding my mom’s room? If I criticized my mom’s oncologist, what would happen to their relationship? I knew there could be a downside to being too demanding in a hospital.”

Yes, there certainly can be.  This is a grinding, soul crushing position to be in – knowing that the standard of care that is being delivered is wrong and bad  but also knowing that your advocacy will be seen as so contentious that it could result in a lower standard of care; having said everything you can as well as you can say it and being dismissed; feeling like there is nothing else you can do.  It is a terrible, helpless feeling.  When my brother was suffering from a MRSA pneumonia in a little crap hospital that makes its money off baby birthing and out patient oncology treatment, I recall having a similar feeling.  Can’t they do a sensitivity on the specimens to find out why it isn’t responding to vancomycin?  Can’t the nurses fix the IV line since it’s clearly infiltrating? (my mother actually ended up redoing it one night after over a day of pump alarms and my brother’s arm swollen up…she got caught and an incident report was filed.  I still wonder if in the incident report anyone bothered to mention that (a) she’s been a nurse – including ER, trauma/burn, and ICU – for 40 years (b) the floor staff were avoiding my brother’s room because he was HIV positive and had a MRSA pneumonia and they didn’t want the hassle of gowning up).  My brother’s illness was slower moving that that of the mother of the author of the essay.  Because of this, we were able to successfully advocate for his removal to a B.A.T.H., where they did do real testing on what they got out of his lungs and discovered that this was not garden variety MRSA (vancomycin resistant and PVL positive).

You want to think that medical knowledge and familiarity with “the system” will help in being a good patient advocate, whether you’re advocating for a loved one or yourself.  You want to think that a plea – phrased carefully and civilly – for a better level of care, more attention to protocol, would not fall on ears deafened by ignorant adherence to all the wrong values.  This essay highlights how medical care environments can so easily be a system where dysfunctional politics and personalities are allowed to flourish, where more value is placed in not wanting to step on professional toes than in putting in place best practice protocols (read the part about the hospital administrator’s reason for why the hospital didn’t have a policy where ICU doctors took lead in caring for ICU patients).

bee joke

If you haven’t heard Tig Notaro’s stand-up act where she discusses her recent diagnosis of breast cancer (and I mean recent, as in just got the diagnosis before going on stage), you should.  It’s amazing.  Here’s an interview Ms. Notaro gave on NPR’s “Fresh Air”.  The set up, without giving away “spoilers”, is that Ms. Notaro has had a staggeringly terrible year by all accounts.  How many of us have been there?  Not a lot in the general population, but if you’re reading this blog, I think the odds that you’re in this group are greatly increased.  I don’t know if this act will resonate as much with others….I hope so.  For those of us who have been there, it’s like a bolt of lighting.

An excerpt:

What’s nice about all of this is you can always rest assured that God never gives you more than you can handle. (Pause) Never. Never. When you’ve had it, God goes, “All right, that’s it.” I just keep picturing God going, “You know what? I think she can take a little more.” And then the angels are standing back, going, “God, what are you doing? You’re out of your mind!” And God was like, “No, no no, I really think she can handle this.” “Why, God, why? Why?” “I don’t know, just trust me on this. She can handle this.” God is insane, if there at all.

My favorite part, it’s hard to tell.  I laughed until I cried about the survey the hospital sent to her mother, which Ms. Notaro opened and read just after she returned from her mother’s funeral.  But I think the very best part is the bee joke.  To me, it’s a moment of reflection on life “before” from the perspective of life after.  The absurdity of trying to pretend everything is normal when it’s so clearly not was captured perfectly.  A transcript is useless, an excerpt won’t give the set up, which is essentially the whole “act” to that point.  All the life shaking things that have happened, the unknown that she’s looking toward, wondering if god has more in store for her because clearly she can “handle” it, and there’s this bee joke which was funny before but now is elevated to the level of breathtakingly painful, and yes, funny but for a totally different reason.  It’s the funny of standing there, pointing and laughing at the absurdity of the world being turned completely inside out and knowing that not only do you need to get up and keep going but that you’re supposed to keep going like nothing happened to show how strong and unafraid you are – be normal, care about things that you now see as simple and not worth the time, tell the bee joke.  What an amazing gift she has that she can communicate this experience.

The act is available for purchase on Louis CK’s website.  No DRM, no corporate overhead.  Proceeds go to Ms. Notaro and Louis CK (who hosts the site and is an amazing comic, worth supporting).  Ms. Notaro has said she will donate a portion to cancer research.

life saver, really

We used to get them in our christmas stockings – a multipack “book” of lifesaver candies that included the usual fruit assortment rolls and I think some individual flavors, butter rum and wild cherry being my favorites as a child.  We used to take a roll of wint-o-green into the closet and bite down hard on the candies with our mouths open to show the sparks.  But I’ve always sort of thought of them as sort of second tier candy.  For years now, if I wanted a hard candy to pop in my mouth in case I need a quick blood sugar boost or to calm my stomach, I usually went for a ricola or a ginger candy.  However, neither of these two more sophisticated candies helped much with the massive dry mouth that the anti-anxiety medication has been causing. I haven’t been taking the med much, just once a day some nights, and only a couple of nights (i.e. not every night).  I noticed the first day after I took one though that about half way through the next day, my mouth dried out like I had just eaten a bowlful of easy chair.  WTF?   It gets like this sometimes about 20 minutes or so after I take a hyoscyamine , which I had been doing quite a lot the week prior but which I avoided once the dry mouth got raging.  If you look up this anxiety med, it lists dry mouth as a “rare” side effect.  Well count me as rare then because this shit is bad.

Yesterday was the worst.  Worse than taking a day-full of hyoscyamine on top of antihistamines and a nasal decongestant, a combo I’ve had occasion to take in the past.  By yesterday, I had taken the anxiety meds two nights in a row.  All day, I hadn’t been able to go more than 10 minutes between ricolas and I was drinking more water than I normally do (which admittedly, is an insufficient amount).  I left work early to go to the wake of a relative and stopped at the drug store on my way home – determined to find something that would at least take the edge off the dry mouth.  I knew I wanted something sugar free because if I am going to need to eat these things like candy (ha) I would prefer they not be little sugar bombs for the sake of my teeth if nothing else.

I looked at the cough drop aisle, stared at each item trying to recall the feel of it in my mouth if I had had them in the past ,and trying to imagine the flavors and what sensations they would elicit if I had not.  Nothing seemed right.  The best I could conjure up was sticky and numb.

Then the candy aisle.  And the bags of sugar free candies.  The bags of sugar free wild cherry life savers.  I considered them.  I considered how the last time I had cherry lifesavers, they felt too bitingly sweet and how if, while eating them, I let them lay in one spot instead of switching them around in my mouth, I could practically feel my saliva glands straining to meet the not so much fruity as chemical intensity.  Ah.  That will do, I thought.

And it did.

that time of year

It’s finals.  Ha, you thought I meant christmas.  It’s that too, but final exams loom so large and immediate that the holiday is only a very hazy twinkling on the horizon.  In the lead up to this most busy time of year, I have had a few real sucker punches.  One is that I received notice that a parent of favorite student worker died.  This seemed unexpected as the student had not mentioned illness.  Yesterday, I found out that the death was due to suicide.

There is no discussion, only whispered talk.  I find this problematic and distasteful.  Worse, one person who had said initially that they would sign a card for the student has, since learning of the cause of death, become reluctant to put their name on it.  Why?  The student’s parent still died.  It is still a loss – all the more potent due to the circumstances.  I know a card is not going to make it all better, but the student feeling alone and forgotten certainly won’t help either.

gone

My cat died Thursday night.  We don’t know exactly what was happening with him physically – on the last day, he went back to the vet for an ultrasound of some of the lumps and a needle biopsy, but he had gone so far down hill.  On Tuesday, two days before he died, his bloodwork had had some abnormalities, but nothing that suggested whatever processes were going on were so advanced.  While I am glad that he didn’t linger on for too long so sick, I am sad that it was so quick that we were unable to do much to relieve his suffering at the end.  He died while I was on my way to the vet, knowing that I would be putting him to sleep when I arrived.  My husband was there though, at the end, and held him while he was in respiratory failure and the techs tried to administer oxygen.  They gave Max a shot of valium to try to calm him, and as my husband was still holding him, he stopped breathing.  It’s been a very sad few days, with more to come I’m sure.  The vet said on Thursday afternoon that she suspected there was some infection going on – they had found evidence of pleural effusion, pancreatitis, and endocarditis that afternoon.  On Tuesday, he had only an elevated WBC count and was anemic.  I’m hoping that at least nothing we did worsened the situation.  The vet has sent off the lymph aspirate and the fluid they drew off his lungs near the end for analysis so we may have some idea next week what happened.  I do feel the need to know.  He was not a very healthy cat, he was old and had had some significant digestive symptoms for years.  I don’t feel shocked, I’ve been preparing for this every time he would go into a flare where he’d go off his food and lose weight.  But I wish the end had been less painful for him.

Orange and white tabby sitting in "cat tree" at a window while morning sunlight fills the room.

Max August 2010