Sunday, September 25, 2011

One of those days....

...when I feel shattered into a million pieces.  Each little piece was something that I thought we would do as middle aged people with grown children. 

There is the travel piece:  We would be free to go places. I wasn't thinking too extravagantly: I just thought it would be wonderful to see other places in the US by car.  Fall in New England, Niagara, New York City, Hawaii.  Well, maybe not ALL destinations would involve driving.    San Francisco was somewhere we thought we might spend some romantic days and nights.  Or just get in the car and drive and see where the road took us even if it was just to Enumclaw.  Now it's an effort to go a few miles let alone take a trip across state to visit family.   We do travel.  Northbound on 405 to Overlake Cancer Center is about as far as I see us going for the time being.  Both of us have loved the ocean.  I doubt we'll get there again, together.

The retirement piece.  That one is broken beyond belief now.  The assumption was (and how foolish is it to make assumptions about the path of one's life?  There's a hard lesson) that we would grow old together in a fairly comfortable retirement.  In addition to a modest trip or two every year we could volunteer, take classes, work in in our garden, just BE together.  Maybe we would have had grandchildren.  There could someday be grandchildren but the odds say that they will not have a paternal grandfather.  A little piece of their lives broken too before they are even here to know it.

What else?  For me, I selfishly mourn that I will (the odds support this) be alone as I age and and I die.  Not the way I thought would happen.

Wednesday, September 21, 2011


Something to be a little happy about!  Mark can eat with some comfort after using Patty's "magic mouthwash".  It's worrisome when he can't eat or loses weight.  If only I could lose the weight for him. 

Tuesday, September 20, 2011

Would you like a side of.....

....effects with your chemo?  Many extra items have been on the chemo menu since this began five years ago.  Nausea, fatigue, peeling and painful skin on feet and hands, and of course hair loss.  I know that hair loss is traumatic for many, as it probably would be for me, but these others hurt.   Radiation served a hefty helping of burnt skin.  The newest offering is mouth sores.  Mark was nearly unable to eat dinner tonight due the painful mouth.  I scraped half of his meal into the recycle bin.  In my own anxiety, I ate enough for him too.  So what can he do?  Salt water rinses several times a day for one.  Today Patty gave him a bottle of  pink "magic mouth wash". It's a medicated mouth wash with benadryl and mylanta that numbs his mouth.  He says it's like a shot from the dentist.  He'll try it tomorrow before breakfast to see if he can eat comfortably and if he can taste the food.   People with sore mouths and esophaguses (esophogi?)  use this.  Just one more thing that adds to the difficulty of living with cancer.  One more thing that chips away at life's joys.

Sunday, September 18, 2011

Wouldn't You Smile Too.....

.....if you could have one these gadgets inserted into your upper chest and threaded into your jugular vein?   There are options, too.  The interventional radiologist said, "Hey if you want to switch from the jugular, we could go the subclavian route." Simple as that!   If I had a port, I'd be infusing my morning coffee and my afternoon menopausal chocolate syrup fixes.   Not only would that save time, it would save dish washing water.  All of us would be happier in the mornings and before dinner, as well as just a little bit greener.   That smiling woman probably is planning on an infusion of Dilettante chocolate sauce!  Does it even look like she needs an artificial orifice in her body through which she will receive toxic chemicals intended to kill or stunt the growth of cancer cells? As a side effect these various juices kill other things, good things too, but that woman has no worries. 
Today Mark is still recovering from his port installation surgery. Hospital people call it a "procedure", which is probably another example of Hospital as Second Language. What makes a it procedure and not a surgery when they both require sedation and scalpels?   Because it wasn't done in an official OR? As far as I'm concerned, if they gave him la-la land drugs and made him bleed with a sharp knife, it was a surgery.   Whatever the official title, he is recovering from it.  Last night he had a fairly decent sleep.  The pain in his shoulder and chest is less.

   As you can see, they gave him a treat with his"happy meal".  Inside this thick folder are a few cards for his wallet, a rubber bracelet to identify him as a power port person, and a user's guide.  Can we just plug him into things here at home now?  "Hey dear, you seem fatigued.  How about we plug you into the socket for some instant energy?"    Can he use a really short cord when he's whacking weeds?    Another humorous (or not) thing about that folder is that he got it on Friday when he had the 46 hour infusion device disconnected.  The nurses gave it to him with a yellow stickie note: "Mr. Baxter left this.  Dr. Crossland please give it to him."  Dr. Crossland is Dr. Smith's wife.  How was Mark to remember to take his goodie bag with him when he was either sleeping, half sleeping, or mumbling things that almost made sense?  The sticker should have read, "Mr. Baxter, who was either asleep or babbling semi coherently, left this.  Dr. Crossland, please give it to Mrs. Baxter."  Leave it to the wives; we'll get it done.

Wednesday, September 14, 2011

Port in a Storm

It was another difficult day doing the cancer-dance, although it worked out in the end.  We arrived at the hospital for the port replacement as directed at 8:00 a.m..  Mark got a reminder call last night to show up at admitting at 8 and so we did.  The procedure would be done at 10 a.m., he would recover and shortly after noon he'd go to Dr. Smith's office to get hooked up to the portable infuser.  He went through the paperwork gauntlet (I had time to get a latte).  A volunteer, an elderly man in a yellow polo shirt guided us up to Mark's room.  The room was in the Lang Oncology Unit: lots of very sick looking people in beds.  I took quick peeks as we walked down the polished hall.  Nobody was laughing, watching TV, sitting in chairs, or apparently eating breakfast.  Was that true or just what I expected to see in a cancer ward?  We were ushered into room W22 and a tall, brown haired nurse, Mairita came in behind us.  She wore bright green cargo pants and a flowered top.  She looked perplexed. 

            “Mr. Baxter, you weren’t supposed to arrive until 10!”  The white haired volunteer’s face took on a look of wrinkled befuddlement.   We explained that we were told to show up at 8 and more puzzlement resulted until suddenly Dr. Smith walked in and things abruptly changed.  He was clearly not pleased with the nurse’s uncertainty.  Of course, Mark was scheduled to arrive at 8 and the procedure would be done asap!  He then talked to us and explained the radiologist’s findings….port was a mess of kinks, bends, and clots leading to discomfort and inefficient infusion of medicine.  “After  all this confusion,” I said, “I hope they do the right thing.”  He said, “Oh don’t worry, it’ll get done right.”  Then he left and we heard him out in the hall talking to the nurse and her saying, “Yes, Dr. Smith, sorry, Dr. Smith, we’ll get right on it, Dr. Smith”.  Hmmm, I thought.  He’s got some clout around here, just as I thought yesterday when we suddenly learned that Mark had this coveted 8 o’clock slot after being told to wait for a call and there were no openings until Thursday at the earliest.

            Mairita reappeared, got Mark into bed and did all the things that nurses do to make people comfortable and reassured. She was a nice woman from Latvia with a charming accent.  She took the vitals, medical history, and medication list.  An IV nurse came in and installed a needle in his arm, then a tech came by and drew blood.  And then we waited.  At about 10:30 a transport guy who looked eerily like the “Dexter” serial killer character arrived, transferred Mark to a gurney and we rolled downstairs to interventional radiology and into a kind of holding pen for patients.  It was a drab, dimly lit, cool room with a few parking stalls for gurneys, separated by curtains.  Lots of random appearing (to me) medical equipment sat around.  The doctor arrived.  A very nice, disturbingly youngish but very confident guy.  He explained the entire procedure, made a few jokes, reassured us that he could have done this port replacement surgery on the first day of his fellowship.  Oddly, this did not give me total reassurance.  A few minutes later another transport guy showed up to take Mark up to the third floor for the procedure because their normal room across the hall was out of commission.  So, where should I wait?, I asked.  Why, go back upstairs to room W22 on the oncology unit.  (Now why do they say “on the unit” instead of “in the unit”.  HSL….Hospital as Second Language, I guess.) 

            Before leaving the original room, I had asked Mairita if I should just come back and wait for Mark to be deposited later.  “No,” she said, “He’s not coming back here.  They’ll tell you where to wait.” Okay, but I was puzzled.  Why would they admit him to a regular and very expensive hospital room, only for  2.5 hours?  What other place would they take him?  Maybe they have an interventional radiology recovery room, I thought.  What do I know, anyway?

Back in the dank, gloomy room in interventional radiology, I sat marooned and confused.  The transport guy said a nurse would tell me where to wait.  So I waited, alone in this stark room with tangles of abandoned medical equipment.  An ominous looking defibrillator lurked in a corner, a stethoscope casually tossed over it.  A nurse named Ann did come and ask me what I was doing there.  I explained the situation and she said she would make a call and  I should wait.  So I waited, getting more and more irritated.  I fell prey to one of the worst things about being the “well spouse” left alone to wait in a hospital: time to think and nothing pleasant to think about.  Is this the future?  Sitting in cool, bland, awful rooms waiting to be told where to go, what to do, told to wait, by kindly strangers?   I almost had tears but got tough and held them back.  Another nurse came by, did a double take and asked me the same thing.  I told her that nurse Ann was checking.  She said that she  would check on Ann’s checking.  Another 10 minutes crawled past and a different nurse came in.   She had seen me there when “Dexter” brought Mark down earlier.  “What are you still doing here?”  I explained again.  She led me through glum, labyrinthine halls to  the nurses’ office and made some calls, then sent me to sit out in the waiting room.  A minute later the first nurse, Ann, came out and said, “Ok, we got it.  Go back up to the room you came from.”  I did, feeling another twinge upon seeing “Lang Oncology Unit” engraved in glass at the entrance to the unit. 
This led to another long, long wait.  Nurses and techs came and went, one brought me coffee but none could tell me when Mark would return and really, how would they know?  A harried looking Mairita came in and said that the charge nurse (more HSL needed here) called her and asked why she, Mairita, was refusing to take back her patient, Mr. Baxter!  Of course she wasn’t refusing to take him back.  She was actually confused because she thought that he would have been taken directly to Dr. Smith’s office for a chemo infusion.  What, I wonder, do patients and families do when they are even more confounded and less in possession of their faculties than I felt at that moment? 
I felt as if I were adrift on a foggy, tossing sea with no horizon.

            So there I sat, waiting.  I leafed through a couple of Martha Stewart Living magazines that I brought with me.  Should I make Asian style marinated pork chops with baby bok choy someday?   Maybe the herbed rice to go with?  How about if I use some tiles, lace, and spray paint to make coasters for Christmas gifts?  Who cares?    I tried to read The Magicians on my Kindle but the whiny main character started to get on my nerves.  Do I care that he turned into a gray goose and migrated to the Antarctic outpost of his magic school with his schoolmates?   I lost track of how many times I ducked into the “Patient Only” bathroom, afraid to leave the room lest Mark return or somebody came looking for me with bad news.   Hallway sounds were indistinct but intrusive.  If I were a patient, there’d be no rest or napping for me.  Somewhere a baby cried.  “Hey,” said a man’s voice “I’m not suburbany, ya know”.  Some distraught people strode past the open door and I heard a young woman say tearfully,  “This is BAD, really bad.”  Nurses clocked by in their clogs, visitors  with softer soles padded past,  cell phones whistled, twittered, jangled.   Alarms squawked and beeped.  A voice on the loudspeaker announced several times , “Critical response team to the behavioral unit”.   Somebody else must be having a bad day.  Workers pushed rumbling food carts along, and a tall, energetic, bald woman did lap and after lap, pushing her rattling IV pole. Probably doing her post operative jogging.  Obviously an overachiever.  Musak wasn’t much aid in relaxation.  A dismal version of “Somewhere Over the Rainbow” was bothersome but somehow apt.   We’re not in Kansas anymore, are we?  Bland landscapes featuring fuzzy streams wandering through gauzy autumn afternoons hung on the walls.  Is this what I want to see in an oncology unit?   Maybe in a place where so many patients lay unmoving in their beds, ashen and wasted, spring flowers might not work either.  I scrawled a log on a yellow legal pad that I had in my go-to-hospital bag (and why didn’t I think to put a peanut butter sandwich in there?)  Sample entries:  12:27 – he’s still not back.  Where is he?  Did that Dexter guy take him somewhere?  12:42 – still not back.   12:44 – I’m really hungry.  12:46 – where?  Why am I writing all this stuff?  And finally, 1:10 – he’s back!   There he was, groggy but able to say hi, able to help shift himself from the gurney to the hospital bed.  I did a quick check:  color good, breathing fine, oxygen prongs in nose (probably normal procedure), eyes open.  Nobody came in behind the gurney with clipboard in hand, and the serious “I have bad news” face that I have seen before.

What had taken so long?  Of course, the procedure wasn’t quite the piece of cake that the young, confident doctor predicted.  The interventional radiology transport guy (not Dexter) explained.  There were clots to clear out, they had to “debride” scar tissue, and the tube really didn’t want to come out.  But it’s out and Mark is now the owner of a new and upgraded “power port”.  This port, unlike the last,  will allow for the injection of contrast into him for future CT scans through the port instead of through an IV in the arm.  It’s like upgrading my 4 cylinder Accord to the 6.  The nurse came back, took vitals and praised his excellent blood pressure.  I felt like the mother of a straight A student at conference time.  She brought him the cranberry juice he wanted so badly, after no liquids for about 15 hours.   We waited again, both of us very hungry but Mark with the advantage of drifting in and out of awareness.  Now and then he would say thickly , “Should I call Patty?  Tell her where I am?”  I assured him that she knew and he’d sound drunk if he called anybody.  A tech handed me a menu.  I ordered us a lunch to share.  Who knew you could get decent chicken noodle soup and a club sandwich delivered quickly and hot in the hospital?   Mark was more awake after he had his juice and ate some food.  Mairita, the nurse, sat down and gave him discharge instructions.  He changed back into his street clothes and his foul smelling slippers.  (I’d have said, hey what died in here, as I tried to help him on with them, but that would have been unforgivable in the Lang Oncology Unit of Overlake Hospital and Medical Center: Medical Excellence Everyday)  Saul, another transport guy, appeared with a wheelchair and rolled Mark  out of the Lang, down the elevator, over the shiny bamboo floors, past admitting, back up the medical tower and into the familiar haven of Dr. Smith’s office.
Safe haven

            We walked slowly to the infusion suite where Judy and Sherrie practically pounced on him.  They fussed over him,  gently pressed and probed the skin around the new port.  Judy attached the portable pump filled with 46 hours worth of cancer killing juice.  They listened to our tale of confusion and delay with smiles and sympathy.  I told them how Dr. Smith seemed a little irritated.  Sherrie said, “A little?  We heard how mad he was at them over there.”  After hearing that things changed when he made an appearance, they laughed and said, “Well, he IS the Chief of Staff.”  It pays to have a doc in high places!  Maybe the ordeal would have been even more provoking otherwise.

            As an anticlimax: After being sent off with hugs and smiles, we are now home.  Mark is snoring away on the big leather chair in the family room.   Gray Cat is sharing the ottoman with his smelly-slippered feet and Maia is sleeping next to the chair.  I’m exhausted and drained and wishing I could not go to work tomorrow but knowing that I’ll go. 

Thursday, September 8, 2011


Why would somebody who purports to care for Mark describe him as "dying"?  To me.   Only to lash out and hurt me, to guilt me into something. Why would this person basically accuse me of keeping her from her dying brother?   But I'm strong in the face of this hurtful, irrational behavior because I know the truth.

Growing and Shrinking

The scan results are in.  The main tumor hasn't really grown much and that's good.  However, some small spots were found on lymph nodes near the lungs.  So the treatment changes and we, in our ways, roll with the punches.  Dr. Smith is confident that this new chemotherapy will get rid of these small spots in a fairly short time.  I hope that's so.  The changed regimen will be a new (to Mark) drug.  It will take 3 hours to infuse and then 48 hours of the pump.  Oh my, back to the pump!  This will be happen weekly.

Am I sad?  Well, yes and no.  I didn't expect good news.  In fact, I thought it would be far worse that it is.  I'm not happy to see him have to go through the new infusion and the pump.  But on we go.  Our world has contracted again.

Sunday, September 4, 2011

"The Long Goodbye"

I will have have to read this series of articles on Slate.  Just from this brief quote, I know that I am living through something similar.  I found this snippet here:

Which will lead me to this: