Lump pt. IV – an unexpected journey

Pulmonary embolism: the sudden blockage of a major blood vessel (artery) in the lung, usually by a blood clot. In most cases, the clots are small and are not deadly, but they can damage the lung. But if the clot is large and stops blood flow to the lung, it can be deadly. Quick treatment could save your life or reduce the risk of future problems.

That.

She was feeling weak.  She was feeling short of breath.  Going down the outside stairs winded her.  Going up the outside stairs exhausted her.  At first she thought it was a cold.  She saw her GP, who gave her antibiotics.  But the symptoms persisted.

And then we were at the ER.

She never had any of the horrible symptoms – never had the sharp chest pains, never coughed up bloody mucus.  She was just weak and easily fatigued by such normally mundane activities as walking from one end of the house to the other.

She had “substantial” pulmonary embolisms in both lungs.

I never found out exactly what that meant – whether it was a couple of giant clots or a whole bunch of small ones or how much clot it took to make “substantial” clotting. It’s one of those terms that is both alarmingly specific and vague enough to allow the imagination free reign.

Emergency Room workers are very calm and friendly.  No matter what you are in for, they always seem to have that attitude that you have a cold, are staying home from school, and they are kindly grandparents who will bring you soup and make sure you are all tucked in and warm.  So when she was diagnosed and the doctor came in to discuss the matter, it was in the manner of helping her decide whether she wanted a sandwich or soup for lunch.  She was going to be admitted.  They were going to keep her overnight for observation.  Her condition was serious.  The whole thing was related to us in that gentle, matter-of-fact manner that would have lulled me to sleep if it hadn’t been such dire news.

So they admitted her.  I went home to take care of a few things.  While I was gone, they moved her to Intensive Care.  I got the notice.  I almost lost it.  In the parlance, “shit got real.”

Sophie heads for ICU

Back to the hospital.  This time into ICU. ICU is what everyone dreams of hospital care being like – it is quiet (but that’s because most patients are too sick to make much noise), rooms are spacious (because crash teams need room to work), and the staff to patient ratio is 1/1 (because disaster can strike at any time).  She had been moved to ICU for 24-hour monitoring because of the possibility of a blood clot breaking loose from her lung, lodging in her heart, and sending her into cardiac arrest.  She was now hooked up to many machines that went whir and beep and ping.  There was a monitor over her head with lots of wavy lines and numbers.  She had several shunts in her arms and hand.

Eventually a doctor came in – an internal medicine specialist this time, not an ER doc.  The new doctor explained that there were two ways to treat pulmonary embolisms.

1. Anticoagulants (AKA blood thinners).  These work by preventing existing blood clots from growing, and new blood clots from forming.  They rely on the body’s own defenses to eventually dissolve existing blood clots
2. Thrombolitic medications (AKA clot busters).  these actually dissolve existing blood clots, but there is a risk of excessive bleeding, particularly in the brain.  The chance is around 2%.

At present, given her blood pressure and condition, the risk/benefits were about the same for each – for anticoagulants there was a mild risk as long as the clots were in place of a clot migrating to the heart and causing a coronary event.  BUT, modern medicine knows a fair bit about treating coronary events.  Thrombolitics would eliminate this threat, but instead carried the small risk of a stroke.  Stokes = bad.  We can’t fix strokes.

At one point the doctor asked her what she thought.  Then the doctor asked me what I thought.

I hadn’t the faintest idea.  The doctor would have gotten more information out of me by asking what I thought the optimal parameters for a Mars orbital insertion were.  Unaccountably, I felt for just an instant that I should have paid more attention to those medicine commercials on TV.  Had I missed one?  “When YOU have pulmonary embolism, ask your doctor about…”

Needless to say I could offer no advice.  It still bothers me that I was asked.

The doctor decided to go with the blood thinners.

That night when I got home, I thought about my feelings almost a year ago when she was first diagnosed with cancer.  “Holy shit!” I thought then, “there is a measurable chance that Lump could kill her in a year or less!”.  Then we hit chemo and I thought “Holy shit!  There is a small but measurable chance that chemo could kill her over the next few weeks!”

That night it was “Holy shit!  There is a chance, a real honest-to-God chance that my phone could ring at 3:00 am and inform me that she had died – TONIGHT!”

This caused me to lose a LOT of sleep during the subsequent nights.  As I am writing this it is causing me to lose sleep still.

“Mutants and Masterminds” is not the sort of game to run in a hospital.

The thing about hospital stays is that they are largely quite boring.  Of course this is by both circumstance and design – usually by the time one is in the hospital, particularly ICU, one is in pretty horrible shape, so such activities as dancing, marathon, and holding a book for extended periods are beyond one’s capabilities (though the advent of Kindle – smaller and lighter than a book – has mitigated the latter somewhat).  Hospitals also try to reduce the stress and strain on each individual patient, so things like group singalongs, yodeling competitions, and dramatic readings from WEB du Bois are generally frowned upon.  Entertainment consists mostly of sleeping, watching small televisions that are mounted too far away, listening to machines go whir and beep and ping, and occasional visits by someone who will stab you and draw your blood while making amiable small talk.  Hospital tray tables are far too small for most games and frequently have medical supplies on them in any event.

So mostly what one does in a hospital is lie there.  Or in the case of visitors, sit there.

“Fun” is not a word much used to describe this situation.

After a couple of days in ICU, she was moved to TCU (“Transitional Care Unit”).  TCU is what most people think of when they think of hospital visits.  The staff/patient ratio is considerably smaller, rooms are smaller and packed closer together, the patients are in better shape overall and so more fractious, and when you ring the nursing station with a problem or one of your machines starts going ping or beep or whir insistently it may be 10 minutes before anyone comes to see what is going on.  It’s louder both because the patients are more active, because the staff has to talk to one another up and down the hallway, and because there are more alarms going off for longer periods.

I was still worried about the prospect of coronary arrest, so TCU scared the living hell out of me.  Probably it shouldn’t have – she was largely out of danger (“largely” in my mind, meant “THERE IS STILL SOME DANGER!!!!”) and the staff of TCU seemed to be competent and compassionate.  But it was strange – TCU felt more like emergency care than the emergency room and ICU did.  I suppose it’s because in all those medical dramas there is always something going on causing the staff to run around and alarms to sound and the like, whereas in REAL emergency rooms and ICU there is a great effort made to keep everything calm and quiet.

There were a couple of patients in TCU who had some form of dementia.  I imagine that it isn’t uncommon.  They made a lot of noise and were generally less than cooperative.  One kept trying to escape.  I thought of how terrifying it must be, over and above just the terror of dementia and confusion, to find yourself in a room in a place where you know no one, plugged into a bunch of machines that go ping and whir and beep, with no idea where you are or how you got there or why, dressed in a gown that could not have been better designed to make you feel helpless and vulnerable.  Many horror movies start out like this.

On her second day in TCU I am able to take a walk with her up and down the hallway.  It isn’t exactly romantic what with medical personnel going back and forth (one hovering nearby to prevent a fall) and equipment parked here and there.  And of course the privacy in the rooms approaches zero so I have to keep my eyes rigidly focused on the end of the hallway so as not to see into other people’s rooms.  And I think to myself “This is someday.  There will come that day, sometime in the future, where this isn’t a thing to get over, when this isn’t a few steps on the road to recovery.  There will come a day, for her or for me or for both of us, when this is the best there is – a short stroll down a hospital corridor arm-in-arm.”  And there is, I admit, a certain romance in that.  One born of many other walks, long and short, over the years, through so many other places.  A certain apprehension, of course, with the realization that we have likely taken our longest walks together, that if we are not closer to the end than the beginning (which is what it feels like) we are at best very much in the middle.  The clock ticks more loudly, the calendar pages turn more swiftly.  But there is also comfort in knowing that we will not face those last walks alone.

And then they let her go and I drive her home again.

 

 

2016 – No Justice. No Peace.

 

I spent 2016 feeling largely like someone had taken a bat to my head and wielded it with conviction.

To be honest the last few years have not been good ones.  For very good and sufficient reasons we left Seattle and the friends I had made there (making friends is hard for me – making friends outside of gaming is almost impossible) and moved to Eureka.  That turned into a disaster as the economic downturn robbed Sophie of work.  When we came to the Bay Area it was functionally as economic refugees.  And we’ve been economic refugees since.  My mental health deteriorated to the point that I wind up spending at least a day a week as a complete or near non-functional, and my sleep schedule is now so erratic as to be effectively random.

Throughout the last twenty years Sophie has been a foundation of strength for me.  Recent years have put strains on our relationship and on her, as tough times frequently do.  They were almost too much for us.  That happens, and usually earlier than it happened to us, but we came back from it, and in 2016 we were on the way back up in our relationship.

Then came that goddamned motherfucking cancer.

In truth, if terrifying, life-threatening cancer there had to be this was pretty much the best terrifying, life-threatening cancer ever.  It was caught early due to Sophie’s diligence with breast cancer exams (lesson to all of you out there – DO YOUR SELF-EXAMS!  That applies to everyone, of any gender – I’ve started doing them for my he-boobs).  It was big and scary when found, but responded well to chemotherapy.  Surgery was as successful as it is possible for surgery to be – we couldn’t have hoped for a better result.  Radiation therapy seemed to go by very quickly, and didn’t develop any of the side-effects which might have slowed treatment (thus reducing its effectiveness).  We got lovely support from friends and family – scarves and money and ointment for radiation burns and physical presence and love.

But cancer is shite.  Now that we’re getting out of the crisis portion of treatment, it’s easy to look back and say “Hey, that wasn’t so bad – we were really lucky!”.  But cancer never feels lucky.  There are few people out there who are diagnosed with cancer and rejoice.  There are few people who go through the weeks of discomfort and nausea and weakness of chemotherapy and rejoice.  There are few people who lie on a gurney waiting to have pieces of them cut out and rejoice.  There are few people who have to go in five days a week to get shot with a radiation gun that rejoice.  Hindsight is a great comforter, a defense mechanism for softening unpleasant experiences, but it fools us into thinking things were less unpleasant than they were.  Going through the experience of cancer is nothing short of catastrophic – even if the end result of the treatment is a good one – and going through the experience of cancer in the United States for-profit medical system where you also have to worry about the six-figure costs of your treatment and receiving bills for more than every single thing you own on a regular basis – is soul-crushing.

Lots of people also died this last year.  I’m really not that much into the phenomena of celebrity deaths, but the drum beat was constant and loud this past year.  It was a phenomena that was frequent enough to be nigh inescapable no matter who you were or which celebrities you loved.   I guess we should get used to it – our idols are typically older than we are, and so we are likely to lose most of them before we go.

Politics in the US were also a disaster this last year.  To be fair, politics in America have been a disaster since the redistricting  in 2010, but most of us weren’t paying enough attention to realize just how bad things were getting.  We knew that Obama held the White House.  We were aware that Republicans held Congress.  But we didn’t pay that much attention to what was going on at the state level outside our own states (and in California, with its super-majority in Sacramento, it was admittedly difficult to see just how far down the toilet state politics had gone nation-wide).  Nobody could quite believe that Donald Trump could become President – it just HAD to be some sort of a mistake.  Worse even, because we hadn’t been paying attention we didn’t quite realize that the Democrats were in such a huge hole.  Two weeks before the election progressives, even those who weren’t all that hot about Clinton, were confidently predicting her easy victory, a Democratic majority in the Senate, and four years of Supreme Court nominations.  Election wonks were predicting the end of the Republican party.  It wasn’t until one day after the election that we woke up to discover that not only had Clinton and the Democratic party somehow failed to prevail over Trump, but that the party that we thought was one of the two political powers in our two-party system was a smoking ruin, not only shut out of the Federal government but in many states – the majority of states – irrelevant and powerless  as far down as the county level.  That it was so far gone that the Republicans were close to the super-majority they needed to call and implement changes to the Constitution without even needing the consent or involvement of Democratic controlled states.  That all those things we had supported – women’s rights, LGBTQ equality, minority rights, disability rights, immigrant rights – were now sitting on the chopping block waiting for the ax.  That somehow all the victories that we achieved over recent years, and even victories that we thought were won and settled decades ago, had lost much of their protection.

It was bewildering.  It’s still bewildering.  Like many of us I am still stunned by it, still coming to grips with it, still trying to figure out what to do now.

So many things piled one on top of another.

To be sure, 2016 had good times too.  Let not the crap cause me to forget what was good about the year.

• Big Bad Con was one of the best things that happened to me this year
• The visit by Sophie’s mother (though a bit stressful) was a happy occasion and fun
• The cats give me joy on a regular basis
• the visit by our friend Paul was great
• the visit by our friend Bryanna was also great
• I attended Pride Day in San Francisco for the first time
• the numerous visits to our friends Steve and Dorene, and their support during Sophie’s cancer treatment, were touching and uplifting
• I read some really good books
• I had some very good meals
• Although FTF gaming was sparse, I had a wonderful time in some of the online RPGs I ran/played in

It’s important for me to remember these things because my natural tendency is to forget or disregard them.  I am pessimistic and depressive by nature, and spend far too much time focused on the crappy things in life, and not enough time focused on the good stuff.  And there certainly was a lot of good stuff to be thankful and grateful for this past year.

So yes, 2016 was an incredibly toxic year.  It was a year I will certainly look back on with a great deal of fear and loathing.  It was a year of scary, a year of not nice, a year when my eyes were opened to shit going on in this world that I had blinded myself to in the past, and a year when I was reminded to my horror and dread that all things come to an end one day.  But it was also a year that I resolved to see – a year that I learned and grew.  It was a year that held precious memories in addition to the horrible ones, a year that held friendship and support, a year that taught lessons that I needed to be taught, and were necessary to see me have a chance to successfully navigate 2017.

It would be nice if I could say now, looking back on the year, that if I could do it over I wouldn’t change a thing.  But that’s just sentimental claptrap.  There’s ALWAYS something – we humans are fallible creatures (so unlike cats!) and we make mistakes both big and small all the time, some of them for important reasons that we think are justifiable, and some for dumb reasons like we aren’t paying attention or didn’t think things through.  We SHOULD have regrets about some of the things we have done, it’s a sign that we learned something and that even if we didn’t figure out what we should have done, even if we couldn’t fix the damage we did, there was still something learned even if it was simply that the previous way of acting or thinking was wrong or inappropriate or over-general.  We can improve.

There are a lot of things I want to tackle in 2017.  There are a lot of things I am looking forward to in 2017.  And of course there will be things that come up that will be painful and awkward and even downright embarrassing or shameful or uncomfortable that I will need to learn from in 2017.  Politically, 2017 will almost certainly be pretty horrible for a lot of people that I care about – 2016 was just the trailer for that, 2017 will be the beginning of the movie.  Sophie will still be dealing with her cancer through early 2017 and to a lesser extent beyond.  My depression isn’t going to magically go away.  But Big Bad Con will still be there this year, as will (hopefully) Kublacon.  I have some writing ideas.  I live in a beautiful place for photography.  My wonderful wife is alive and improving thanks to her own hard work and the work of her physicians and care teams.  I still have friends, and maybe I will make more this year.  There’s plenty to do, a lot to get involved with, and maybe even orks to fight in Warhammer 40k (if I make enough soup for Sophie).  There will be good moments in 2017.

2017 will be OK.

What’s Next for Lump?

We are now at the point where the pace of treatment and the pace of developments for Lump has slowed considerably.  Barring some sort of catastrophe I will be writing Lump posts occasionally, but not at anything like the rate that things have been written in the past.

For the new year I am hoping to finish up “-isms and Me” with the most important entry – the one about my experiences, and then make it an occasional series based on all the shit that I anticipate going down because of the incoming administration.  I also want to move the “Jesus Can’t Have Nice Things” stuff that I currently use “Two She-Bears” for over to this site as a regular feature.  I am guessing there is enough material to make it weekly, but you never know.

For all of those who have followed my journey through Lump so far, thank you.  For those of you who haven’t, why on earth are you reading this?

Lump pt. 3 -The Day After Last

 

She’s done with radiation therapy.

More or less.

There are still the radiation burns to heal.  There is still an open blister to treat.  There are still the side effects of fatigue and pain to be dealt with.  Some of them will go away quickly – five to seven days.  A few will take longer, possibly years.  One or two, such as scarring, may never go away at all.

Stretching on into the future, there is more to come.  There are continued Herceptin infusions until the middle of next year.  There is hormone therapy for three years.  There will be more frequent check-ups and follow-ups and blood tests and monitoring.  There will be increased worry, additional concern, nagging doubt, insecurity.

There will be frequent reminders of mortality, that comes for us all.

But the pace changes now.  Things are no longer in crisis mode.  In the near future treatment and sickness and side-effects will no longer be a part of our daily lives.  She will still have a constant reminder of her body’s fragility, of course.  But we can once again start thinking of things like travel and camping and attending KublaCon and visiting her family.

We don’t have the faintest idea of what to do now.

She and I talked about it last night.  Despite the fact that she had just finished her treatments and we had reached an awesome milestone, we both felt sad, and somewhat bewildered.  Neither one of us knew what to do now.  There is a whole lifestyle tempo change staring us in the face after almost a year of dealing with Lump.  And we haven’t really prepared for it.  We’ve been so busy dealing with things day-by-day that there hasn’t really been much chance to think of any future plans.  We’re barely out of the hospital grind when we discover we are suddenly stuck in a rut.

Maybe that shouldn’t surprise us.  In a way its rather funny actually.  When she first discovered Lump she acted without hesitation, without letting fear hamper her decisions.  We moved into crisis mode not effortlessly, but decisively and with determination.  Now we find ourselves moving out of crisis mode, and that level of decisiveness and determination seems suddenly to have left us – we made it to, if not the finish line then at least a finish line, and have found ourselves taken by surprise that the race goes on and our determination gas tanks are near empty.  We’re not sure what to make of this – at a time when we should be giddy with excitement and relief, at a time where she of all people should be feeling pride in her accomplishment, satisfaction in the positive outcome made possible in large part because of her determination to beat Lump, she is instead both melancholy and deflated.  Part of this can be attributed to her treatment side-effects: she is uncomfortable much of the time and lacks energy.  Part of it is because of other medical problems she has at the moment that have had their treatment delayed by radiation therapy, which are now impinging on the holidays and threatening to make them less enjoyable.

Part of it is just change.

People are pretty good about changing when they have to.  I, at least, am terrible about changing when I don’t have to.  And who likes change when they are sick?  It’s hard to remember at this time when things should be so encouraging, but she’s still sick and weak and struggling.  Lump and chemicals and surgery and radiation have kicked her around for the better part of a year like a soccer ball at the World Cup finals.  And she has taken it.  She has taken everything that they have thrown at her – all the parts that have been poisoned and cut and burned out, all the hair loss and nausea and loss of appetite, all the weakness and discomfort and pain, all the needles and exams and tests, all the changing rooms and hospital gowns and covering her head in public, all the explanations to friends and loved ones – and the next explanations and the next explanations and the clarifications of explanations and the revisions and the next step explanations, all necessary and important to keep our support network up to date but all tiring particularly when repeated for the nth time.  She has been brave and loyal and true throughout it all – a veritable paladin who was able to look beyond what she was going through and be a friend and adviser to others going through the same thing.  It shouldn’t be a surprise that she is tired now.

Tonight we are going out for dinner to celebrate.  It’s important to celebrate the victories.  And this is a victory.  Her victory.  I get to share in it though, for which I am very grateful.  We’ll see what the future brings.  For now, we HAVE a future, and I think that is what we are just starting to realize again.  We haven’t reached for it yet, but it’s there waiting for us.  It’s what she fought for.  Its what she endured for.  It’s what she put up with all sorts of indignity and inconvenience and discomfort and sickness for.  And if it takes us a few days to realize that the fruits of all her labor are dangling before us, and that we can now reach out and take them, that’s okay.

She deserves her moment of relaxation.  She deserves some time to recover.  She deserves a bit of a rest.

She saved our future.  Let her catch her breath.

 

Lump pt. 3 – Waiting Room

The person who sits quietly, reading a handheld electronic device.

The busy person, working away on a laptop.

The person who sits quietly, reading an actual paper book.

The ancient person, looking rumpled.

The young person, wearing neon shoes.

The middle-aged person who actually thumbs through the magazines.

The person who works sudoku puzzles, muttering.

The person who seems far too sick to be the one in the waiting room.

The person who comes dressed for jogging.

The couple who exchange few words.

The couple who chat amiably.

The couple who say nothing at all.

The person here for the first time, who can’t help looking around.

The person who has been here before, disinterested.

The person here for what they hope to be the last time, radiating suppressed excitement and relief.

The person who is amazed at how quickly it goes.

The person who is bored and thinks it is taking forever.

The person who slouches in the chair, struggling to stay awake.

The person who sits prim and erect, eyes forward, like a statue.

The person dressed in a ripped and stained tee and sweatpants.

The person who is dressed as if they were in church.

The person who is dressed for work.

The family discussing things.

The family just making conversation.

The family keeping an eye on the young ones.

The friend who drove someone here.

The friend who came along in the Redi-Wheels van.

The friend who came to give support.

The black person.

The yellow person.

The red person.

The white person.

The gay person.

The straight person.

The bi person.

The asexual person.

English speaker.

Chinese speaker.

Spanish speaker.

The Russian speaker.

 

These are the people like me.

These are the people of the waiting room.

These are the people who are the spectators, the supporters, the cheerleaders.  Not the people with Lump, but the people who love someone with Lump.

We’re all different.

We’re all the same.

Whatever our age, however we dress, no matter what we do to pass the time, we keep one eye – always – on the doorway through which our loved ones pass on their way to get treatment.  Waiting for their return to us from the mysterious world into which they disappear to get treatment for the silent and terrifying illness for which we can do nothing but be there.

We watch each other as well.  Even those who fiddle with their hand held devices and read their books and try to seem disinterested watch one another.  We catch one another’s eye from time to time and we smile at one another and we communicate with our eyes and our body language and sometimes occasionally by speaking “Yes, I am there too.  No, there’s nothing wrong with you.  I feel sad like you feel sad and I feel worried like you feel worried and I’m here to be supportive like you are here to be supportive.  And I’m scared too and there is nothing wrong with you and I hope your person is all right.”  We nod.  We smile.  We note one another’s cancer pins and we feel less alone.

And then the door opens and eyes flick in that direction to see who it is coming out and we all start our internal checklist:  face set in a positive smile?  Check.  No sign of worry?  Check.  Eyes dry?  Check.  Because this is our moment.  This is what we are here for.  Our someone will be coming through that door and it is our job, our ONLY job at that moment, to make them feel loved and special and wanted in the aftermath of being stripped, stuffed into a machine, and having radiation shot into their boob or prostate or brain.  And because we only have a second – less than a second – to make sure we do it right, we develop that little checklist to make sure we give the first impression that we are there to give, the reassurance that is our purpose, we have the checklist.  And after the first few times in the waiting room, the checklist becomes instinct when the door opens.  We want to radiate that same sense of support, or serenity, of positive regard, for everyone who comes out that door.  It’s partially Pavlovian – the sound of the door triggering an automatic response.  But mostly I think it’s solidarity.  The people coming out through that door are all dealing with Lump.  We want to give them every chance, every support, no matter who they are.

And so the heads swivel, each of us put on that supportive look, just for an instant, and then go back to waiting for our someone to come through the door.

Lump pt. 3 – Truckin’

 

She’s started radiation therapy.  It is extremely boring.

Five days a week we have to drive to the radiation center where she goes in with the other patients to get radiant and I sit in the waiting room with all the other pensive loved ones.  I am always among the youngest people there (aside from the occasional offspring).  I fiddle with my Kindle Fire or read my Paperwhite or stare at the coffee table books (“The Australian Landscape and its Artists” – where did THAT come from?”).  It only takes a few minutes – no more than 15-20 and she is out again and ready to go.  Not even time to get really into a good book.

I am a child of the cold war, so there is something about radiation that makes me feel uneasy.  Having spent my first couple of years of school diving under my desk periodically before everyone in authority decided that fuck it, all the kids are going to be dead anyway so why waste school time drilling them, I knew much more about how much radiation it took to kill you than how much radiation it took to keep you alive.  It didn’t come in tiny measured doses focused on destroying only very specific areas of tissue – it was flung at you across the poles in megaton packages by inscrutable Russians and Chinese.

And the comic book promise that it could give you super powers?  Totally a lie.

Aside from that, however, it has been a breeze compared to chemo and the run up to surgery.  Fifteen minutes of “bzzap!” and done for the day.  She isn’t suffering much in terms of side effects (though the skin in the area remains sensitive and is starting to sunburn) and an online friend, SJ, who has been through radiation treatment, sent her some moisturizing cream that helps.

I think we have finally achieved the new normal.  The normal where it doesn’t seem strange anymore that she wears a scarf on her head every day (though her eyebrows and eyelashes are back, and the short stubble on her head is a deep brown).  Where cooking restrictions (much reduced in any event) are just part of the meal planning.  The daily trips to radiation therapy are just a part of the daily schedule.

You get used to almost anything, I suppose.

Lump pt. 2 – The Tenth Day

The day arrives.  We get up, get in the car, and go to the hospital.  She hasn’t had anything to eat for the last 12 hours, so I also skip breakfast, vowing to have something after she has gone into surgery.

There is no alien invasion.

The San Andreas fault gives nary a tremble.

She does not have a heart attack on the table and die.

There are no complications resulting in the transformation of the surgery into a radical mastectomy.

The worst – the VERY worst thing that happens is that she forgets her Kaiser card and sends me back home to get it.  I can’t find it (turns out to be under some papers on her desk).

D. comes to keep me company.  I am mildly resentful until D. gets there because what I want to do is just sit quietly and be frightened.  But its the right call, and D.’s presence for the several hours of the operation and the recovery is a great comfort to me, as well as a distraction that prevents me from, well, sitting quietly and being frightened.

The surgical waiting room is a dreary, depressing place.  It is in the old wing of the hospital and is close, stuffy, disorganized, and without windows to the outside world.  The entire area feels a bit weird and unsettling, I think because being part of the oldest portion of the hospital it isn’t laid out like the parts I have been in.  The person who is supposed to be keeping track of the surgeries and alerting people to when they can go in and see their loved ones keeps wandering in and out, sometimes for as long as half an hour.  No lie, when the phone rings from surgery to announce that so-and-so is out of surgery, a random waiting person has to answer it.  I feel a certain amount of sympathy for the person who keeps wandering in and out:  its obviously a boring job just having to sit there and answer the phone a couple of times an hour.  Still, I don’t feel that random people should be answering the phone and giving updates to other random people.  That just doesn’t seem professional.

Three hours pass while she is prepped and taken into surgery.  Surgery lasts 2 hours and 5 minutes.  There’s a tv screen that shows the status of each patient.  It’s color coded, though as D. points out the color coding does not seem entirely accurate.  Every so often it crashes and someone has to jiggle the mouse to get it back in working order.  There is also a television that plays insipid game shows.

At some point I get something to eat with D.

(Yes, D. also manages to keep me from starving myself while I wait).

Eventually the surgery is over and she gets moved into Recovery 1.  The person who keeps wandering in and out tells me that I can’t see her yet, even though the sign on the wall says that patients can have one visitor in Recovery 1.  D. asks if I want to push for it, but I say “no”.  I don’t want to make a scene, and I am so wired up and tense that if I start anything any resistance to my request will quickly reduce me to hysteria.  I am actually doing well, but I know I’m still on edge.

After an hour’s wait she is moved into Recovery 2.  A random person answers the phone and lets me know that I can see her now.  And I do.

Yeah, I know what you are thinking, but to me she never looked more beautiful than right this minute.

We talk for awhile and the nurse gives us a rundown of the various things that she is and isn’t supposed to do post-surgery.  The nurse mentions that she will need some drugs at the pharmacy, and thinking of D. still waiting I volunteer to go get them and give D. a chance to visit.

Now comes the SECOND worst thing to happen.

D. isn’t in the waiting room.

I wait for a few minutes, thinking she might have gone to the bathroom, but then the person who wanders in and out wanders in and I ask about D.  The person who wanders in and out hasn’t seen D.  I explain that I need to go to the pharmacy and could the person who wanders in and out please let D. know that it’s possible to go in for a visit now?  The person who wanders in and out says “of course”.  I go the the pharmacy, get the drugs (along with around $5,000.00 worth of other drugs that the pharmacy does not notice have been cancelled and later won’t take back).  Knowing that she is having a nice visit with D. I decide to take a side trip and get something to drink.  Then I head back for surgery and I FIND D. IN THE HALLWAY!  The person who wanders in and out did not give my message to D. because D. was on the phone.

I do not murder the person who wanders in and out.

So I send D. back for a visit and sit in the waiting room again,  fiddling with my phone and watching the person who wanders in and out wander in and out and trying to guess from the expressions and body language of the other people there how serious their loved one’s surgery is and finally the phone rings and a random person answers it and calls my name, telling me that it is okay for me to go back and see her now.

So she and I and D. have a nice visit until the nurse tells us that she can go home now.  I get the car and D. gets her out to the pickup point and she gets in.  Then D. takes us all out for Japanese food, which again is really nice of D., and she drinks miso soup and has sushi and then we say goodbye to D. and we go home and we live happily ever after, at least for a few days.

 

Lump pt. 2 – Nine Days

(NOTE:  this entry was written post surgery.  I found myself completely unable to write about it as it was happening).

Disaster.

Due to an error, she has been taking her anticoagulant for several days too long.  Her blood takes 4x the normal amount of time to clot.

Surgery must be delayed.

From what she tells me both her surgeon and surgical scheduling are a bit miffed by this, as though she were an errant child who had willfully stolen a cookie before dinner.  Naughty naughty.  But there is no help for it, and surgery is moved back by nine days.

Nine days.

It doesn’t sound like so very long, does it?  Just over a week.  No big deal.

It’s a big deal.

There are lots of things that we don’t know about Lump – the most important being how prone it is to spread.  But the one thing that we do know, with an absolute and chilling certainty, is that it grows – fast.  Very fast.  Hatefully, malevolently, terrifyingly fast.

Every night I watch her sleep.  Every night my eyes are drawn to that spot.  And every night I think of Lump, battered but not destroyed, lurking within her and growing stronger.  Getting bigger again.  Looming like a thunderhead within her flesh.

We were both psyched up for the surgery, and had primed ourselves to face the stresses and uncertainty of that procedure.  We were ready to deal with that day and that procedure and the possibility of problems.  But now we had to wait.  Wait nine days, knowing that nothing, nothing would get better during that time.

It’s like being squeezed in a vice.  Mentally it’s hard to catch my breath.  Half the time (the time I am supposed to be sleeping generally) I want to run around and let off steam and act like a screaming nutcase.  The other half of the time (the time I am supposed to be awake, generally) I just want to curl up and fall into a deep slumber, not to be awakened for nine days.

I hate Lump and I fear Lump for what Lump is doing to her.  I want, more than anything, for her surgeon to go in and cut Lump out of her, stab Lump with a scalpel, and throw Lump into a pile of medical waste for incineration.  For nine days my dreamt-of retribution is delayed and I feel constantly jittery and unfocused, like I have had too much coffee while pulling an all-nighter.

Of course we get through it.  What else can we do?  It’s a setback, and it’s difficult, and there are moments when the tension or despair or frustration rise and threaten to overwhelm.  And I wish I could say that the nine days are a breeze, filled with enjoyment of life and living in the moment and pleasant times – and there is some of that.  A lot of that actually.  That doesn’t make up for all the stress and fear though.  Or the sense of anticipation betrayed.  It’s HARD to get through because it is a HARD thing for us.

But in the end we make it.  She makes it.  I make it.  The time passes and we go on.

Lump pt. 2 – The Calm Before

 

Next week is unknown.

Next week could bring good news or bad.

Next week everything could go to shit.

Next week everything could be all right.

And there is nothing whatsoever that we can do about it today.

In a few days things will start happening fast – there will be consults and tests and evaluations.  Her genetic scan will come back, and may change everything or nothing.  Her medication regimen will change in the run up to surgery.  There will be special antiseptic cleansing and no food after a certain point and the (almost) final time for the surgery will be set.  Then comes the big day and we will go to the hospital at the appointed time and she will be whisked away from me and off to surgery and I will spend a couple of hours staring at the clock and fiddling with my phone and wishing I hadn’t finished the good book I was reading (though if I hadn’t I still wouldn’t be reading it).  Then I will get to see her and she will rest for awhile and then we will go home.

We went out for dinner tonight.  It was a nice place – probably nicer than we could afford (we owe a lot of people money) but we were frugal in our choices.  She still doesn’t have much appetite since her last chemo, though that was weeks ago, so she made do with an appetizer and some clam chowder.  I had fish and chips.  We split a dessert.  It was fun and charming and romantic and above all normal except for the scarf.  There’s still a scarf.

After dinner we went for a walk along the waterfront.  It’s hard, in a way, to do that.  I used to go for long beach walks, and hikes, and camping with her and now a five-minute walk on flat, paved ground leaves her needing to rest and that’s painful to see.  But at the same time it was nice and romantic to sit on a bench together, just the two of us, watching the sky dim (Bay Area fog = no real sunset), watching a couple play with their dogs, watching the waves on the rocks and the pelicans and that one lone, stubborn surfer who just wouldn’t come in until catching one last wave.  Chatting about inconsequential things.  Being close.  Sharing warmth.  Sharing history.

It was nice.

Sometimes you just have to let tomorrow be tomorrow.

Sometimes you just have to live in the moment.

Sometimes, even knowing that bad times are ahead, you have to focus on the good time that is now.

Sometimes you need to acknowledge the the moment, savor it, use it to (re)build your strength.

Sometimes you just have to let yourself have fun, no matter how dire the future is.

Lump pt. 2 – Paperwork

I’ve been having nightmares, waking up crying, struggling to sleep, then fighting desperately to wake up.

In my dreams things have gone horribly wrong, the way things seldom do, but with that brutal speed that is the hallmark of complications during surgery.  There were cancer cells in the lymph nodes, cancer cells in the chest wall, there was the necessity of altering the surgical procedure and anesthesia  and a heart attack or respiratory failure, and just like that she is gone.

But not.

A part of her still lives.  Her chest still rises and falls.  Her heart still beats.  Everything is still there but the wit and the humor and the smile and the shared jokes and twenty years of life experience.  What’s left lies on a table surrounded by machines that go whir and beep and ping.  I’m looking through a window into the room.  Doctors and nurses and assorted medical staff are looking back.  Behind me I can hear so many, many people.  Her family, our friends, my family.

All telling me what to do.  What they would do if they were me.  They get louder and louder.  And they are angry and afraid and they all have an opinion and not one of them agrees with what I think I should do.  The medical staff, by contrast, are completely silent and faceless in their surgical gowns and masks.  They just stare, saying nothing, offering no opinion, no hint, no guidance.  Only the machines make noise.

And that’s where I usually wake up.

She’s filling out her patient care instructions in anticipation of her surgery in a week.  Part of that is deciding whether she wants a Do Not Resuscitate and Comfort Care order and under what circumstances.  It’s unlikely that there will be any sort of serious problem, of course, but it’s always good to be prepared.  I should do one too, just in case – you never know when you might need one.  But I have a special fear of these things, because I have been on the merry-go-round of DNR once before.

My mother had a kidney transplant.  It went horribly wrong.  When she started rejecting the kidney, her surgical team decided on “aggressive” therapy to save it.  This meant pumping her full of immunosuppresants to halt the rejection.  With her immune system shut down my mother would then come down with all sorts of ailments that would roar through her body like a forest fire.  When she got sick enough that it could no longer be ignored, she would be taken off the suppressants and pumped full of antibiotics and such to ward off whatever was making her sick.  Which was great except that then she would start rejecting the kidney again.  So back came the suppressants and back came the infection and the cycle repeated over and over again.  By the time the decision was reached that the transplant wasn’t viable my mother was too weak to undergo another surgery.  So the cycle went on over and over.  Eventually she dropped into a coma.  A yeast infection was killing her.

A.  Fucking.  YEAST INFECTION.

My mother had left instructions for this eventuality.  They called for comfort care only the minute she was diagnosed as being terminal.  Functionally, she was terminal once they couldn’t get the kidney out.  Certainly she was terminal once they had gone through several more rounds of treatment and it was obvious to everyone that she wasn’t going to pull out of her downward spiral.

But her doctors wouldn’t say it.  And my step-father couldn’t ask.  So I had to ask.  In fact I had to do more than ask – I had to ask repeatedly and eventually drive to Davis and confront her doctor in person.  And in the end I was the one who had to say the words, to not just say them but pull out the DNR order and wave it around and demand that they take my mother off life support and let her die.

My step-father was with me.  He looked so small.  He didn’t say a word.  All I could see in his eyes was “Please don’t do it.  Please do.”

In a week we go in for surgery.  It’s entirely routine.  We should be in and out same day.  It shouldn’t even require general anesthesia.  A scalpel, some gauze, and the surgical equivalent of a melon baller and we’re done!  Huzzah!

But it can go bad so quickly.  And it scares me that I can walk into the hospital for something minor and face Armageddon before I walk out.  But I will do it.  Whatever she puts in her patient care instructions, I will make certain that they are carried out per her wishes.  I just have to make sure I am strong enough when the time comes.