Second Hand News.

4/2/18

If I were a news outlet, I guess I’d be out of business by now. I’m the newspaper delivery person who didn’t bring you your Sunday paper (actually, maybe I took it instead). I’m the TV station with the old test pattern graphic on, except it’s there 24/7. I’m what you get during the zombie apocalypse, you know, after all the government broadcasts have stopped, and all you hear is static. I’m what you get below 88, and above 108 on your FM radio. Nada folks. I’m breaking news, without the breaking part, or the news part. I’m all the news that’s fit to print, but with no press, and no paper. I could go on and on with my metaphors, but the basic fact is that it’s been a helluva long time since I’ve posted. So below you’ll see I started this post back on April 2nd- talk about old news. But since many of you are unawares of what this last month has brought, I’m going to leave most everything in. Hopefully, you’ll follow along with my ramblings, even if some of it seems like watching an old SNL weekend update that no longer has the same wit because the stories are dated. You are welcome to change the channel at any point during this broadcast.

Monday April 2nd: Sitting at MGH in Danvers as Abby starts her new chemo/immunotherapy combo today and watching the snow fall. It’s been a pretty weird winter weather-wise, so I guess why should the start of spring be any different? I think I remember many years ago being on Nantucket for the daffodil festival with some friends (BK- Before Kids) for Abby's birthday (April 27) and it was snowing while we were walking around and she started to cry, or maybe just sniffle a bit, because she missed Maryland. Or technically the Maryland weather. Or more technically, Maryland weather in April. Before it gets hot. Way too hot. But there’s no crying about the weather in our house anymore. Bitching occasionally, mostly just on my part when I’m putting shovel to stairs. Or snowblower to snowbank. Mainly, because there’s so much else usually to do. In retrospect, I should’ve spelled out “cancer” during the last big snowfall, then pissed all over it. Damn- missed my opportunity for a great photo AND some punkish artistic expression with deep meaning.  Abby’s asleep right now during her first bolus (“dose”) of chemo There’s some noise in our room at MGH that sounds just like the sound the “Alien” monster made when it got near someone, that weird “click click click” sound. It's not quite as loud, but still a bit creepy, and there is a vent in our room too. Should I be concerned? Should I go make a flamethrower with the oxygen tank and some kind of fuel and get all MacGyver on it? Should I be carted away (don’t answer that)? And now an alarm is sounding (for real) and I am truly having an “Aliensque” experience. If the lights start flashing I feel I am deep trouble. OK- so the alarm is that the infusion is done (still very loud)- waiting on the nurse now. Alien is still click click clicking away though, and I am wondering what else I could use for a weapon in this small room. Lots of syringes; a magazine I could roll up; medical waste (gross); a pillow - could smother the f’er; waste basket (not good theatre or weapon); random bolted-to-the-wall medical equipment (useless); hand cream (death by moisturizer?); my laptop (wait I need that); a curtain (hiding behind them never works in the movies); and lots a latex gloves- well at least I won’t get my hands dirty. Maybe it’s just that we’ve been in this small room for 5 hrs+ with 3 to go? I mention the “Alien” theory I’ve developed to the nurse who just came in; she laughs, but unfortunately, has never seen any of them so has no idea what I’m talking about and is now slowly backing out of the room. OK made that last bit up...  The last few weeks, or however long since my last post, have been per usual, “interesting”. Lots of arguing with insurance companies about meds, prescriptions, prior authorizations and the like. Walking the fine tightrope about reordering new scrips the day we can while at the same time knowing CVS doesn’t normally have the drug in stock so they will have to order it and therefore won’t come in until after Abby runs out. Have tried multiple workarounds to this but it never is the same scenario or the same drug or the same exact situation. Just lots of balls in the air and trying to keep them aloft.  Tuesday, April 10th. We’re at MGH doing follow-up after last weeks chemo/immunotherapy. Did I mention the name of one of the drugs? Somewhere, there’s a researcher laughing his/her ass off, but are you ready for this? It’s called “5FU”. Or, said more demonstratively, it’s fiiiive…(and a big) FU! and then you thrust your middle finger into the air! That’s right everybody, FU- seems so appropriate. So “5FU" and “Cetuximab” are the cocktail ingredients cozying up to Abby for the next 2 months. Essentially, she goes in every 2 weeks, stays for a chunk of the day on the chemo, then goes home with a fanny pack that has a portable pump that stays running for 2 days, then we go back and have it unplugged from her power port. Sounds romantic doesn’t it? But I digress folks, we’re here for a check up basically, but also have to mention to the doc that Abby’s feeding tube is clogged. Normally, I’ve become pretty adept at unclogging the f’er, but couldn’t do it before we left the house- tried, but just ran out of time. So a nurse well-practiced in this art form comes in; tries, and fails to unclog it. Then they bring the expert, Carl, who we know quite well (we know everybody at this point), and poor Carl can’t Roto-Rooter the tube either. The verdict- it’s got be replaced. Well, we’ve already been at MGH (Danvers) a few hours at this point, and they call ahead to Salem Hospital to see if they can work us in. Long story long- we go to Salem, the nurse tries and fails to unclog it, confirms it’s got to go, then tells us it will be 2-3hr. wait. Now this is definitely not a fine dining establishment we want to wait that long for; there’s no bar to wait at, no snacks unless you count graham crackers, and the lighting is way too harsh. So we’re told we can come back at 10am the next day and not wait, so Abby’s up for that, but it means she won’t have any food/nutrition/fluids until then, basically fasting, and it’s not even Yom Kippur. I wanted to suck it up and wait, but I only get one vote, and Abby gets, well, all the votes. It’s her body and I’m not living with the toll it takes physically on her, except as a husband and caregiver, but it’s not the same as actually having the physical pain and exhaustion she goes through daily. So with the votes tallied, I lose both the electoral and popular vote by a landslide, and so we head home.  The next day, Abby seems good- gets ready, morning’s going smoothly, and we just need to give her some meds since we’ll be gone for awhile. Abby’s feeling somewhat anxious about the procedure, even though it “technically” isn’t supposed to hurt, and it only takes an hour in the OR, but still- this tube’s in your body through your stomach, and well, it’s just a weird thing that’s going on and even if it’s just “uncomfortable”, she doesn’t want any more pain in her life than necessary, and neither do I. So she takes her regular dose of OXY, and a very small dose of Ativan for anxiety, which she hasn’t taken in months. I leave the room to pack up the rest of stuff, and I come back into the bedroom a few minutes later, and where’s my wife? Is see her sitting on the ottoman, but she’s really not there. I mean, she's teleported to another planet- possibly even out of our solar system. “Hello?” “Abby?” “Honey- what’s up?” Is that a smile or a grimace? More smile I think. WTF- is she high from the meds, and that fast? Well okey dokee we need to be somewhere very soon, so it’s time to rise and shine my lady. After carefully navigating her down the stairs to the entry hall, then down the porch stairs and into the car, I strap my Raggedy Abby doll into the car and off we go. We get to Salem Hospital, and by this time I’m really escorting her into the hospital- “Wheelchair, Abby?” Nope- doesn’t want one. I manage to get her into the IR (Intervention Radiology) and we get called to register. I flop her into the chair, and I explain the recents events, and yes, she’ll need a wheelchair, or maybe a landing strip so we can set down the plane she’s flying on. Away we go, with me explaining her current state of mind. We go to pre-op; all her vitals are fine, so they said she’s good to go, and probably won’t remember the procedure. Well, OK, that’s a good thing I guess. So I take my seat back out in the waiting room- kind of like sitting in coach class- crowded, no leg room, bad snacks. About an hour or so is what I’m told. Fortunately, I am always prepared for long waits, and almost always have papers/projects to grade with me. True to their word, about an hour (or so) later, I’m retrieved from the very crowded coach room and go back to recovery, where I find Abby in pretty much the same state I left her in, except now she has a nice new unclogged feeding/med tube (officially known as her “J/G-tube” for those with a thirst for random bits of trivia, as in “So you know what the name is for those tubes sometimes people need to use eat with when they can’t eat normally? It’s called a J/G tube” Woot woot give me another beer!").  As the minutes pass and I see no signs of my wife anywhere in the building, despite the fact that she’s lying next to me, I say to the nurse, “Um, she really still seems to be out of it”. Well sure lets check on that. Vitals are still fine, pupils ok, etc.  ACT I (12pm) Scene: Recovery room Nurse: (talking quite loudly but short of yelling) “Abby- can you hear me”, “Hi Abby- can you open your eyes for me?”  Me: “Hi honey- how ‘ya doing? Do you know where you are?” Abby: (head shakes no sort of, eyes are still closed) Me: “Is this normal?” Nurse: “We have a reversal drug (similar to NARCAN but used on non-opioid drugs like Ativan) we can try if it comes to that.” Me: "Is this normal”? Nurse: “Tell me again what happened.” ACT II (1pm) (See ACT I) ACT III (5pm) Scene: ER room, with Abby, Me, Nurse and Doctor, several hours later. Did not use “reversal drug” as was deemed not necessary, yet. Me: "Is this normal?” Nurse/Doctor: (said together) “Tell me again what happened." Doctor: “She’s slowly becoming more aware. We need to run some tests to make sure there isn't any brain trauma, and also check that she didn’t aspirate.” Me: “Yes, I see that’s she’s slowly coming out of it. Was this an accidental OD?” Is this normal? Nurse/Doctor: (said together) “Possibly- that’s we need to run the tests to rule things out. we are going to give her some fluids now.” ACT IV (8pm) Scene: Cancer floor, double-room, Abby is checked into hospital. Patient on other side of curtain is a teenager, approx. 13 years old, parents are w/her. Is definitely scared- has never stayed in the hospital- there is crying. Meanwhile, Abby is still flying, maybe at 15,000 ft. instead of 30,000 ft. Me: “Is this normal?” Nurse: “Tell me again what happened.” ACT V (10pm) Scene: Abby is flying at approx. 10,000 ft. She has had no food and one bolus of fluids in the last 60hrs. Very cranky and obstinate. Decides to pull her IV out of her arm.  Me: “What are you doing- aahhhhh…?" Abby: “Mmmmgrrrumph.” Me: (pressing nurse button-does not seem to be working) “Abby, let me have your arm- blood, is spurting everywhere." Abby: “Mmmmgrrrumph.” Me: “Stop moving and let me put pressure on this and raise your arm up- I need to wrap it in gauze.” Abby: “Mmmmgrrrumph.” Me: “Nurse?!" Abby: “Mmmmgrrrumph.” Me: “Are you grimacing or smiling?" Abby: “Mmmmgrrrumph.” ACT VI (11pm) Scene: Same room, different time. Abby is now at 5,000 ft. Possibly getting ready to land in the next few hours. IV is back in place. Meanwhile, all tests are all negative. Doctor visits. Me: “When do think she can go home tomorrow.” Doctor: “Should be able to get you out by noon. Needs to see the dietician and speech therapist before we can release her.” Me: “What? Why? When?” Doctor: (something long, complicated and pretty irrelevant to the current situation) Me: “Is this normal?" ACT VII (12am) Scene: Same room, different time. Abby is hovering at 5,000 ft. Nurse visits.  Nurse: “You can’t stay here overnight.” Me: “Well, she can’t be left alone. She’s cranky and somewhat combative. She just tried to leave the hospital on her own. Someone has to be with her 24/7.” Nurse: “Why did she try and leave the hospital?” Me: “Wouldn’t you?” Nurse: “I can get an aide to sit with her.” Me: “Is this normal?"

ACT VIII (2am)

Scene: Same room, different time. Abby is still hovering at 5,000 ft. but landing gear is down. Nurse visits with aide in tow. 

Nurse: “You can’t stay here overnight.”

Me: “Oh hi- are you the aide staying with my wife? Her name is Abby.”

Pleasantries exchanged. Parents are still with the girl on the other side of the curtain- they’re not leaving. I don’t say a word- I wouldn’t leave my kid’s side either.

ACT IX (2:45am)

Scene: Abby has landed safely. Aide is in room texting.

Nurse: “You can’t stay here overnight.” Me: “Yes, I’ve heard that.”  Scene: Craig goes home.  Me (to the dogs): “Is this normal? Curtain closes. 

Folks, I could easily continue our “Play" well into the next day, but to summarize: we were finally discharged the next day at 5:45pm. No food for Abby, finally got her some more fluids though. Ridiculous meetings with nutritionist and speech therapist. I got to tell them all of Abby’s history, medical, nutrition, drugs etc. Was a wonderful and lovely afternoon with tea and crumpets. Teenage girl, fortunately for her, got a private room in the a.m. and got away from all the insanity on our side of the curtain. Poor kid. Final diagnosis though- most likely minor OD- no more Ativan in Abby’s future; that plus lack of food and fluids did her bad. Glad everything was aok, but I was saying it all along- too many meds and no food/fluids = bumpy flight, especially when you haven’t bought a ticket.

Which brings us to present day, May 1st. Well, I skipped lots of stuff of course in the last few weeks. So, for a synopsis, here goes: Abby started her new chemo/immunotherapy (Cetuximab and 5FU) 3 weeks ago and is supposed to be given every other week, with new scans most likely after 4 treatments (2 months). A minor setback with the second treatment as her white blood cell count was low, and she was anemic, so they skipped her second treatment and postponed it to last week, where all went well. This week is an off week for her- I get to do my final grading of papers and submit them, so good timing I guess. Tomorrow I get to move Aliza out of her dorm at Emerson and home for the summer- a wonderful past-time in good ‘ole Beantown, though never as fun as move-in day September 1, which this year we will experience again (been there done that with Ben) as she will be moving into her first apartment.  I have a couple of weeks off then start a summer class. Ben graduates May 25th this month from MassArt- budding cinematographer and ready to work. Always good stuff to along with the other “stuff”, and I always have to remind myself of that; some days it’s easier than others, no doubt about that Jack.  

Honestly, there’s really never a week, or a day, that doesn’t have some tale to tell. Some are the things that made “Seinfeld" so great, such as yesterday when my (not regular) mailman delivered a pile of mail to me from mixed households that didn’t belong to me, so I ran after him to give them back and he said “I don’t know where these people live”. And I said, “Well look, these people live at blah blah Paradise Road, these people live right there (pointing).” So I stood there reading the addresses off of the mail-pieces, hoping he’d catch on that indeed, he could figure out where these people lived by looking at the their addresses on the envelopes. I ended up handing them back to him, bid him a fond adieu, and watched him in confusion try and figure out what had just happened. He may still be wandering my neighborhood, surely to show up in the new horror movie, “The Mailman Cometh”. Of course, there are the many things that end up on shows like “ER”, St. Elsewhere and Nurse Jackie. I always hope for more Seinfeld and less ER… 

We think a lot about all our friends and family, and are always so thankful for the different types of kindness everyone has extended towards us. Keep praying your prayers, lighting the lights, sending good cheer, and keeping in touch. I will once again, try to be a better informer and reporter. Write less, more often, I keep telling myself. 

Go B’s, Celts, Sox (please don’t get my hopes up), and happy spring everyone, despite the hot, gross weather paying us a visit for the next couple of days. I didn’t bitch about the cold or the winter, so now, well the gloves are off (literally) and the AC will be on soon.

Much love,

Abby, Craig, Ben and Aliza