Says Breakfast

Early morning update on “how’s Mark, where’s Mark, how are you holding up?” I didn’t even realize how much time has passed since I posted a substantive update. Maybe that’s your answer right there?! At least to Part 3 of those questions. But let’s focus on the big guy in the center of this storm. Mark continues to improve in so many important ways. While being in the middle of round two of chemo right now, he continues to not experience any majorly feared chemo symptoms. He’s not feeling particularly sick, and while he’s expressed surprise that there’s more hair in the bottom of the drain these days, he’s staying calm about it. He even gained 6 pounds in one day this week, he said! But he thinks it’s the gallons of saline and drugs ending in -cide that might have done it.

In the everyday’s-an-adventure saga swirling around Mark, and unbeknownst to him at this point, his insurance on Tuesday let us know that Wednesday would be his last cover day for his skilled nursing home. Now, as much as I’d like to throw insurance under the bus completely, part of this is that the social worker never did discharge planning with us. And being a newbie to all this, I just la-la-la’d along trusting them when they said he wasn’t leaving any time soon, and didn’t know that I should be furiously planning for Step #182 of this journey. All the way until they said, “hey! It’s tomorrow!” Ugh. Luckily, the mighty force of Mark’s sisters worked with me and yesterday we were granted a four day extension by Aetna. That buys us some time to figure out where Mark goes next.

“But Aetna said he doesn’t need skilled nursing anymore. Why can’t he just come home?” Excellent question. The tiny problem is that across the board, speech therapy to nursing to social workers to case manager, everyone at the nursing home says he will continue to need 24/7 care. That’s 24 hours a day, someone with him. All the days. Plus of course transport to doc appointments, bringing in in-home care for therapies and such. So the choice is go ahead and try to make that work, or find a personal care home for him while he continues to heal and fight his cancer.

“How are you holding up?” I really liked the maybe four days I got in the last week where there was no immediate crisis. The good old days! Yesterday, I taught my classes and also talked to, in no particular order, Aetna three times, the nursing home four times, Mark twice, neurosurgery once, as well as toured two personal care homes, and did a phone interview with someone I could hire to come into the house. I also served the boys dinner and took Matthew to fencing. And worried about how to make this rather impossible decision. I slept pretty poorly last night. I am still putting one foot in front of the other.

The guy in the center of this storm was funny on the phone last night. I asked if he had eaten breakfast. He said “of course, breakfast is the most important meal of the day.” “That’s what I hear,” I said. He replied, “Says Breakfast.”

Ever onward, D.

Sinuses can have cancer, too

Today I met Mark — he arrived via transport provided by the skilled nursing facility — at the hospital for his outpatient medical oncology appointment to prep for round two of chemo next week. (Did you know that you have to add a descriptive word in front of the word “oncologist?” Me either. Mark has to see a radiation oncologist, medical oncologist, and dental oncologist).

We also met with neurosurgeon who rounded on Mark when he was inpatient. I asked a lot of questions. The more I learn, the more questions I have. I learned a few more things today. So on the one month anniversary of his surgery, I thought I’d give a brief recap and include more details now that I’m more knowledgeable. Keep in mind that that’s not very knowledgeable, relative to what I now deeply understand about the massive complexity of the human body.

Mark’s tumor started in his sinus, so it’s considered a sinus cancer. From there it marched through his skull and into his brain cavity. I say brain cavity rather than brain because it didn’t make little roadways into his brain, it just grew in the space normally reserved in our skull for only BRAIN. So imagine something wedged into your head like, say, a baseball, where there was no room for a baseball per se.

When did it start? We don’t know. It’s an aggressive cancer so it’s hard to say. I spend an unnecessary amount of time trying to recall the signs of this coming. We’ll never know when it began.

I learned many more details about the surgery, and you can ask me if you’re into learning about brain surgery. As a science teacher and a generally curious person, I am. And learn I did. Let’s just say that Mark will probably need to carry a card that says “body contains metal.” Which is kinda cool, if you think about it in a space odyssey kind-of-way. If you think about as someone who mostly likes life to make predictable sense, it’s a bit more challenging. And yes, I went home and watched a YouTube video of a bilateral craniotomy. I suggest caution if you choose to do this.

The tumor, in addition to exploring his eye orbitals and sinuses, pressed into his prefrontal cortex and eventually caused swelling of his brain. The prefrontal cortex does a few important jobs for us, and when it gets fussed with it can lead to some problems. These include impaired judgement, memory loss, reduced motor skills and spatial reasoning (see our van as evidence), inability to understand/interpret social cues, impaired language skills, loss of empathetic reasoning, reduced impulse control.

Given all that, one month into the repair effort on this problem, Mark is doing remarkably well. He’s quite agile, but not yet consistently so. He’s regaining memory, but not yet consistently so. He’s apt to suddenly make decisions, some good (used a wheelchair at the hospital today! Yay!) and some not (suddenly standing up to get out of the wheelchair and stumbling before nearby hands catch him). He’s good with some numbers (Yay! I now know how to check messages on the house phone!), and not with others (being at the hospital from 1:15 – 3:15 pm is two hours. I’m pretty sure. I’m tired, but I’m pretty confident on that one). The docs say, and I understand and agree with them, that we just have to wait and see. Mark has to do the work — OT, PT, speech, chemo, radiation — but we have to wait and see.

So today I waited. 4 hours at the hospital today = 4 hours getting to talk with Mark, hold his hand, rest my head on his shoulder. We found things to laugh about. He teased me and I teased him back. He drank a diet ginger ale even though he’s skinny as a rail. I got him to eat some peanut butter and crackers. He wheeled himself along stubbornly until he got tired of running into walls, and then I stepped in and straightened his path. I’m reminded of this Bible verse: two are better than one… if either of them falls down, one can help the other up. And so, together we keep going.
Ever onward, D.

WANTED: Mark

Note to the masses: if you visit Mark, do not leave with him. He will likely tell you that he can, but that is not true. This note is necessary for one good reason: Mark escaped. He’s been hankering to get out, as you can imagine, and even tried using the magic acronym “AMA” to set him free, but the social worker has been helping me keep him put. He’s still recovering from a very significant surgery, and he still has a lot going on medically other than that. He isn’t making a lot of sense these days. He told me about a wonderful lunch he had in the dining hall with a new resident. “I told her about the library and the swimming pools and picnics we have here!” he enthusiastically recalled.

Mark gets daily speech, PT and OT. His next round of chemo is Sept 11, 12, and 13. One major struggle is that while the facility will transport him, he can’t navigate the hospital alone. He can’t find his way to a doctor’s office or recall why he’s there. I’m back to school, and I am balancing working with arranging for someone to be with Mark at every appointment. And there are a lot of appointments. In addition to chemo, in the “neuro” alone prefix, he’s got neurosurgery, neurology, and neuropsychology appointments. He has opthalmology and ENT to follow up with. He needs to meet with the radiation oncologist. They told me he should really check in with his PCP, too. He’s getting a little sick of all of it.

We knew Mark was a flight risk. That’s why he was given an ankle monitor when he arrived at skilled nursing. The ankle monitor is designed to set off an alarm if Mark passes the threshold of the front door.

All went fine, until the woman who’s ALWAYS at the front desk in on the daylight shift went on vacation. Mark looks more like a regular visitor than a typical resident there. He’s tall enough that you can’t easily see his surgical scar on the top of his head. The average age in skilled nursing appears to be about 80, so at 56 he doesn’t remotely fit the profile of a skilled living resident. He wears regular street clothes, and he isn’t using an ambulatory assistance device, relying on the walls when he needs to steady himself. So one day when Mark followed a group of visitors out the front door after figuring out how to remove his ankle monitor, the woman at the front desk didn’t even look up.

I was at work when I got a call from his friend, who had gone to visit Mark that day. “Um, I’ve got Mark at the house. Should I stay with him?” “YOU WHAT?” I yelled into the phone. The friend sounded nervous, “I found him at the end of the parking lot when I showed up to visit, and he said he was waiting for a ride home. I brought him home.” “HE HAD BRAIN SURGERY! HE CAN’T COME HOME!” I said, adding a few choice curse words. “TAKE HIM BACK!” “Um, okay,” I could practically hear the sweat begin to cover his brow. “Okay, let me try to get him back in the car.” I hung up and called the facility. “MY HUSBAND ESCAPED. SOMEONE LET HIM OUT!” I yelled at the front desk lady. She put me through to the supervisor, who anxiously told me the friend should bring Mark back. Um, yeah. I gave him the friend’s phone number and he said he’d call as soon as they got back. I waited. And waited. Thirty minutes later, the call came that he had been returned, safe and sound.

I had installed a Nest security camera on the house, and I looked at the footage later. I watched Mark’s awkward gate as he approached the front door, the black surgical stitches still arcing across his skull. I watched as two minutes later he left the house and got back into the car with his friend.

I drove the facility to meet with the supervisor. I learned that skilled nursing really doesn’t want to lose your loved one, because they have to report these things to the state. It creates a lot of paperwork and dings their permanent record. Which I was glad to hear. I also learned that they can’t restrain or drug your loved one to keep them in. It creates more of a prison-like situation. Not allowed. The ankle monitor Mark had was the most secure device that was permitted. Short of the dementia unit, they couldn’t lock Mark in.

I toured the dementia unit with the supervisor. If you’ve never toured a dementia unit, you might be — as I was — picturing grandma and grandpa saying silly things and shuffling around. What it looked like was a dismal locked ward with a swarm of wheelchairs loitering around the nurse’s station, some people yelling, many sleeping, and others looking confused or agitated. The smell was strong. The atmosphere was of impending doom. This would not work.

To try harder to keep Mark in, the supervisor put up a “Wanted” style poster at the front desk. A black and white mug shot of Mark looking ancient and exhausted was taped a magic marker headline stating “ELOPEMENT RISK.” The posted a 24/7 sitter in his room.

Later, I asked Mark if he remembered escaping. “Oh yes,” he said calmly. “Why did you do that?” I asked. “I wanted to go home and have a beer,” he said.

That seemed pretty logical to me.

The People Who Know Things

Day 21 ends with Mark┬ábeing placed! Finally. Moving to a skilled nursing facility. This has not been an easily won battle. Mark’s been ready, the docs say, to be discharged for a few days. Hospital social workers have been trying to find a skilled nursing facility that will take him. I think of them as The People Who Know Things. They’ve been trying to bring me up to speed on how this massive part of the US health care system works. The problem seems to be Mark’s combination of needs. He’s still confused and being guarded by a sitter to keep him safe. The People Who Know Things tell me the only option for keeping him safe once he’s discharged to skilled nursing is to be placed in a locked unit, and the only kind of locked unit is dementia.

This sounds both terrible and great. It’s great because once Mark got out of the neuro ICU, which is locked, the next units he has been on are unlocked. Surprisingly, for the fact that this is the major trauma hosptial in our city, there’s almost no security other than in the ER. You can walk right in, take the elevators up, and walk into the units without ever saying hello to a single staffperson. That also means that Mark could probably figure out how to make it to the elevators and end up anywhere in the hospital, or out of it for that matter, and it’d take a long time to find him. I like the idea of him not being able to get lost or escape.

The People Who Know Things are having a hard time getting Mark a placement. They ask me for parameters. They print off lists and ask me to prioritize my choices. I’ve heard of none of these places. The print offs are from internet searches and they have star ratings. What do these mean? Not much, the People tell me. They take my random rankings and make calls. Rejection, rejection, rejection. We move from facilities within 5 miles to within 10, then 15. T “Why won’t they take him?” I’m trying to understand. The People tell me that they don’t want to take someone who is not only needing rehabiliation from brain surgery, but who also has to be go to chemo. Facilities don’t want to cut into their bottom line by having to transport Mark to his many trips to the hospital.

Yet another list of options is generated. One social worker points to the name of a facility and says, “My dad was in this one. It was good.” Okay, I said, making it my latest top pick. She called, and miraculously, they said yes. We had a placement. Within a day, Mark would be transported by ambulance to a skilled nursing facility.

Suck it SNUC

Okay, you have to get yourself in the mindset of someone whose life has been chaotic and terrifying for three weeks to appreciate this. Where gallows humor is one of the ways to survive and persist through the muck of sadness and complex medical care. My dear friend Kim, whose gifts of humor and intelligence know no bounds, wrote a rap that captures the essence of the current experience. Key to appreciating it is knowing that Mark has been a tad non-compliant, and that docs call skilled nursing a SNIF and that the cancer Mark has is called SNUC. Thanks for the LOL, Kim!

I feel so stuck
since I contracted this SNUC
going to a snif
hoping to avoid cDif
sick of my pic line
wanna be online
really not feelin fine
wanna see sunshine
optic nerve? not doing well
need a nurse? i refuse to ring the bell
gotta babysitter
restraints and the mittas
No to the sodium
wanna yell from podium
NONE OF YOUR BUSINESS
IF I GOTTA HEART!

Kim’s song is much better than the poem I wrote last night (apologies to my mom and dad for cursing AGAIN):

Oh snap!
Mark has SNUC
And now we’re F*****ed.

Hospital Gratitude

Hospital dispatch: Day 18 in the neuro ICU. I’m giving a shout out to every doctor, PA, and nurse who’s treated Mark from neurosurgery, otolaryngology (it’s a learning opportunity–look it up!), Oncology, pulmonology, and any other -ologies I am forgetting. Also speech, PT and OT. And the case worker. And nutrition and housekeeping and security. And the parking attendant who is the most dapper dresser with the sweetest smile everyday. And Annie, my new friend from the waiting room in the neuro ICU who has laughed and cried and talked with me for weeks as she worries and waits for progress with her mom. I’ve been dropped into this complex community during this truly horrific time, and I’m so grateful for all these people.

Alexa, Stop!

Part of daily challenge is the total lack of control we have as the medical world swallows Mark up. We are waiting for tests, waiting for answers, waiting for treatments. I wait for Mark to wake up. I wait to see how much of him is going to return. Knowing Mark has cancer living in his head, it’s frustrating to wait for his body to be well enough to start chemo. I obsess over all those devilish cancer cells racing to multiply and invade new spaces. Each day without the chemo feels like we could be losing the race.

Mark was finally cleared for chemo yesterday. He had his first treatment today, the first of three days in a row on, 18 days off, that is the planned protocol. He tolerated his first treatment well. Meaning, my fiesty fighter didn’t fight it. You’d think with him having consented to brain surgery that it’d be no concern that he’d allow chemo. But Mark remains true to form and even with cognitive deficits and sleep aides, if he’s alert enough he picks and chooses what he’ll consent to. Yesterday, the nurse came in and handed him a little cup of his morning medications. “What’s this one?” he said, pointing to a small white pill. “It’s a sodium pill,” she said. “I’m not taking that one,” he said, and then took the others: anti-seizure pills, pain pills, anti-anxiety pills. Him saying yes to anything isn’t guarenteed.

To be fair, he still seems fairly confused. He often doesn’t remember one hour to the next. He doesn’t remember who came to visit him yesterday. The remote control for the TV doesn’t mean anything to him, he can’t use his cellphone, and the call button for the nurse remains a mystery.

Last year, I bought an Alexa. We didn’t have a stereo system, and I wanted a reliable way to play any music I wanted in the house. I had tried a vareity of small speakers with bluetooth and wasn’t satisfied with any of them. Mark and I often spent evenings taking turns asking Alexa to play songs. Mark loves music, and knows the lyrics to many songs across genres, starting from about 1940 and excluding most of the pop world of the 2000’s. One of the saddest moments from this past spring, as Mark plunged into sickness, was when Alexa stopped being able to understand him. His nose was permanently clogged (by tumor, we now knew), and when he was tired he slurred his words like a drunk. Now, from his hospital bed, as the equipment beeped around him day and night, Mark would call out over and over “Alexa, stop!” Alexa still wasn’t listening to him. He was patient with her. He would give up, fall alseep, wake up, try again.

Mark – Bad Patient

Mark spent 21 days in the neuro ICU before being discharged first to the neurology unit and then to oncology to wait for chemo to start. Mark’s body was slowly getting stronger, but one thing remained the same: Mark was a pretty bad patient. This wasn’t a huge surprise, as he was a pretty bad patient before he ever got to the hospital. At one point last spring, I answered the house phone and was told that Mark’s cholesterol was elevated. “They want you to start on a statin right away,” I said. “I’m not doing that,” he shot back. At this point, he had already stopped taking his dilantin. I knew it was useless to argue.

In the hospital, Mark continued to be difficult. Before he had even opened his eyes after the surgery, he was working on getting his restraints off. In addition to the restraints, he had mittens on both hands so he couldn’t use his fingers. He was surrounded by equipment keeping him alive, but the primitive “fight!” part of his brain was doing great. He’d work until he’d exhaust himself out to get these restraints off, a few minutes at a time, sleep, repeat. One day, he finally achieved success. His sister Marcia was visiting, and we were standing on either side of his bed. Mark started working on his restraints. We gently laughed at the impressive survival response. Then suddenly he got one mitt off. Marcia grabbed one arm, I grabbed the other, and he somehow STILL was able to use his one free hand to pull the other mitt off. He immediately went for his head, which was covered in drains and a ventilator and about 100 stitches holding his skin together. We held, I yelled, and Mark was able to get his hand to his ventilator and begin pulling. He began coughing out clotted blood as the nurses ran in and Marcia and I backed away, frozen, staring at him thrash. Marcia grabbed my arm and said, “Let’s leave. This scene will be burned into your brain. You don’t need to watch this.” I let her lead me out. She was right.

It should not have come as a surprise when I came into his room one day and the nurse told me he had pulled out his PICC line. Mark was awake sometimes could communicate a litte. I asked Mark, “why did you do that?” He said it was an accident. The nurse held out his arms and demonstrated how long a PICC line is. Not an accident. A few days later, I was told that Mark had pulled out his lumbar drain overnight. I was afraid he was going to hurt himself. They added in medications to keep him more sedated.

Once he got downgraded to the neurology unit, Mark maintained the fight position. His baseline in life is not wanting help. With the recent brain surgery, his poor vision, and challenges with balance, the doctors labelled him a fall risk and insisted that he get help getting out of bed. It was unclear if he understood what the call button was, or whether he just refused to use it. One night, I called the nurse’s station to check on Mark. They connected me to Mark’s nurse, who said, “He’s being difficult. In fact, he’s standing in his doorway right now. Sir! Sir! I need you to go back into your room.” I heard Mark mutter “No.” The nurse asked me if I could talk sense into him. I said, “If I could have talked sense into him, we wouldn’t be in this position right now.” The nurse kept me on the phone and I heard him say, “Sir, I’m on the phone with your wife right now and she wants you to go back to bed.” I heard Mark slur out “I’m sure she’d like me to do a lot of things.” I hurried off the phone, and laughed for a long time at Mark’s fiesty spirit. After a few of these incidents, the hospital posted a “sitter” in Mark’s room 24/7 to make sure that Mark stayed put.

For as much as I was terrified that he’d hurt himself, I also could appreciate his desire for autonomy in a situation in which he completely lacked control. Within a couple months, he had gone from a man who happily went to work, took care of a house and a gaggle of kids, paid the bills, andran at lunch time, to a guy who was not allowed to walk into the bathroom alone. I’d rather he fight than give up.