Time Buffers… It Does Not Heal All Wounds

Four years ago this morning, my dad called me at around 8:00 a.m.  He knew I generally slept until noon (up all night), so I knew it was something different and serious before I answered the phone.  He told me he couldn’t walk right, and asked if I could come to the house and see what I thought (have been an RN since 1985, though disabled for the last 15 years- I keep up with medical stuff by keeping myself alive).  I asked him if I had time for a shower, anticipating we’d be going to the ER, and he said yes, but don’t take too long. Dad had been having back issues and some weird symptoms on and off since the November prior to March 3, 2016.  He needed a better work-up, and at this point, the ER was our best bet.

I took my shower and packed my meds/insulin figuring that I’d be away from home for hours.  Then I drove to the house.  I wasn’t really prepared for what I saw.  Dad stood up when I came down the hallway after letting myself in with the garage door opener I kept for checking his house when he was on vacations.  Dad was standing next to the bed, with ‘balance’ that looked like someone trying to stand on an inner tube in a pool.   He had no clue where his body was in space (proprioception problem).  I told him to sit down, and I’d get what he needed.  First order of business was breakfast, even though I suggested he wait because of any lab tests  that might be done, but if I didn’t feed him, he wasn’t going to the hospital.  OK… food first.  I don’t even remember what I got for him. I do know it was in a bowl, and doubt I made oatmeal, so likely cold cereal.

His lady friend (not going into detail about her, as she was a self-serving “care taker” who was handy on occasion) came over and got some of his belongings together to take in case he was admitted.  I wasn’t going to take him home in his condition, so started getting my speech ready for that conversation with the ER doc.   I got his electric shaver and warm washcloth, as well as his toothbrush- he wasn’t going anywhere ungroomed.  Then I told him I was calling 911, since I knew there was no way to get him in and out of the car safely with what I saw of his balance issues.   He didn’t argue.  I knew he was scared.

The ambulance took some time to get to the house, as his address was in the county (by one block), and the station responsible for sending emergency help was several miles away.  They came in and got him loaded up, and I told them in no uncertain terms that we were to go to a specific hospital that wasn’t the closest.  His vital signs were fine, and he was not in respiratory, cardiac, or any other distress physically.  They agreed.  I followed in my car (and lady friend took her car).

I told the folks at the ER that I needed to be back with dad, since he tended to downplay things to strangers.  They needed to know about the months of erratic symptoms.  They also needed to know that dad would not do anything medically unless he could ask ME if it was legit.  He used to say he was getting a return on his investment in sending me to nursing school.  They let me back as soon as they had him gowned up.  He was terrified.

As with any ER, it takes time to sort through everything and get testing done.  We were there for at least 9 hours, in which time he had several tests done, including an MRI that almost didn’t happen because of dad’s claustrophobia.  He almost changed his wishes for a traditional casket burial because of claustrophobia.  They sedated him (a Benadryl made him loopy for a couple of days, so the stuff they gave him IV really made him blotto, which is what he needed so the MRI could happen).  They found some strange lesions on his spine- not what we were expecting.  There was talk of sending him home (alone), and I pitched a semi-dignified fit.  They said that the ER was for finding problems – and not necessarily to admit people. I told them of his living situation, my disability in not being able to care for him adequately when he couldn’t transfer safely, and the other safety issues in sending him home.  They did admit him, and he never saw his home of 40 years again.

I’ll never forget that day, or the 19 hours on April 3-4, 2016, just a month after he was admitted, and going a rehab facility that repeatedly blew off his complaints of abdominal pain.  On April 4, 2016,  he died after a diverticula that hadn’t been diagnosed ruptured and caused catastrophic infections in his abdomen, extending into his bladder and  filling it with gas.  He was a great dad- and I’m so fortunate to have ‘landed’ with him when I was adopted at 10 days old.  He is still missed daily, though it’s easier to remember the good and goofy stuff.  My mom died in 2003, and I couldn’t anticipate the devastation of losing my last parent, and the one who was constantly looking out for me and my best interests starting from that first day in 1963. I didn’t grow  up with siblings.  My mom did things in her own way to show her love, but dad was more open about it. We had a great relationship when I became an adult, and I could tell him anything.  When I was younger, I didn’t appreciate his work stress, or the ways he made sure that all vacations included things just for me along with general sight-seeing.  He’d go out of his way to make sure I got something special out of each trip.

I now live in his house (was also my home for 9 years as a teenager through nursing school), and I’m so thankful.  I have him, and my mom, in every room of this house, whether it’s some trinket or photo, or memories of things that we did here.  I couldn’t live anywhere else.  It’s home.  It’s my family in a house.  It’s what I have left.

My Earthly Rock… Part One

The last couple of months have been heart wrenching.  My dad died.  He was 83 years young, and until the end, he was very active.  A couple of weeks before he went to the hospital, he drove from south Florida to northern Illinois in two days, covering the distance from south Georgia to home in one day to outrun a snow/ice storm.   He had always been my biggest ‘cheerleader’ from the time he and mom got me at 10 days old until he died.  But let me back up a bit.

My dad had always been pretty healthy.  He had the standard appendectomy and gallbladder surgeries.  He did have a bout with thyroid cancer a few years ago, that required surgery and radiation, but he was considered to be cancer free with the scans monitoring his situation.   This is a guy who didn’t even own a bottle of Tylenol for a long time, and when he started having some unexplained back pain several months ago, he finally gave in and got some Aleve.   When he called his primary doc about the back pain in November 2015, the doc ordered muscle relaxants over the phone- for a guy who had no history of chronic back pain, and did have a history of cancer.  I wasn’t (and still am not) very happy about that.  I feel he should have been seen in person.  Just as a matter of good care for something that wasn’t part of dad’s history.  Dad just sucked it up and dealt with it.

He felt good enough to go to Florida after Christmas with his female acquaintance, whose daughter and son-in-law have a condo overlooking the ocean.  During his time there, he had what was felt to be food poisoning, and did a two night stint in the hospital down there, staying an extra night when he got too dizzy in the elevator when leaving the first time for them to actually let him go.  He felt bad enough after that to want to get home as soon as possible,  to see his own doctor who finally ordered an x-ray when he got back.  X-rays really aren’t that great for back pain unless there is a fracture of some sort, or the discs are showing degenerative changes (which is the very basic place to start with diagnostic testing).  The x-ray didn’t show much besides some normal aging changes.  The doc also gave dad some pain meds, which did help a bit.  But dad got worse.

On March 1 (a Tuesday), dad asked me to go to see his doctor with him (being the family RN, dad liked it when I could explain things to him after appointments in language that made more sense to someone not in the medical field).  He was able to walk into the office and perform all of the tests with no difficulty aside from some pain with specific movements.  The pain was mostly to the left of his spinal column in the chest portion of his spine (in the back).   The doc ordered an MRI, which dad did NOT like, because of claustrophobia, but it was the best thing he could have ordered…. and would have been much more useful a few months earlier.

The next day, dad called me to say that he woke up with his legs feeling weird, like he couldn’t feel them very well, but it had eased over the course of the day.  He chalked it up to the muscle relaxant he’d taken before bed the night before, and decided not to take any more of them.  The next day, Thursday March 3, dad called me at 8:00 a.m.  Anybody who knows me knows that I’m a night owl normally, and getting up around noon was my usual routine.  Dad always respected that, so I knew that if he was calling, something was really wrong.   He said he couldn’t walk right.  He’d gotten to the bathroom, but needed me to get over there as soon as I could.  I asked him if I had time for a shower, and he said yes.  I had already figured that going to the ER was the only logical thing to do at that point, and was getting ready for a day at the hospital, minimum.  When I got there, dad was sitting on the bed.  He stood up, and it was like watching someone try to stand on an inner tube in a swimming pool.   I told him to sit down, and just let me know what he needed to get ready to go to the ER via 911- it was going to be the safest way to transport him, as well as avoid the waiting room.   After he shaved and had a bowl of cereal, we got a few things put into a bag in case they kept him (I couldn’t imagine them not keeping him since he lived alone, I’m disabled enough that caring for him would be not very logical no matter how much I wanted to, and he needed to know why this was all happening… he needed tests).  Then EMS came for him, and I followed the ambulance to the hospital.

The usual ER things were done (IV, labs, x-rays), and then they ordered an MRI.  Dad was not amused, and was very anxious about the whole thing.  He’d gotten some pain meds, anxiety meds, and nausea meds, along with a washcloth over his eyes, and by the time he went to the MRI I don’t think he would have cared if they put him in a coal mine shaft.  He said it wasn’t so bad.  The results weren’t so good.  They’d only done the lower spine in the ER, as they can only test for emergent problems- and there were some ‘suspicious’ lesions in his lower spine.  It was enough to admit him.   And enough to scare him.

His oncologist (he requested) has been a family friend for decades, as well as my mom’s and my oncologist at times (mom died in 2003 after 17 years cancer free).   The good doc came up that evening, and suspected that dad had multiple myeloma based on the type of tumor he’d had in his thyroid gland a few years earlier, and the looks of the initial MRI.  He also said that they needed to get an MRI of the rest of his spine, since the area where dad had the most pain was higher up.  Dad has always been terrified of hearing ‘multiple myeloma’ since his mom died from that (with amyloidosis complicating things the most) in 1979.  SO much has changed in treating MM since then, and “Bob” (oncologist- not real name) said that if it was MM, that dad could have a good quality of life with chemotherapy pills.   But first,  more testing with the MRI being the one dad was most nervous about.

It took a couple of days to get dad through the MRI, but when they got it, they saw a lesion pressing ON dad’s spinal cord at T-7, causing the pain, as well as inability to feel where his feet were when he was trying to walk.  He could move his legs, and had good strength when pressing or pulling against the doc’s (or my) hands.  The pain at this point was the worst, but only really bad if he had to move.  I’d never seen him in so much pain, and in 20 years of working as an RN, I don’t know if I’d seen too many other people with that level of pain.  Even my chronic pain (which is a different beast altogether) paled in comparison (and I don’t condone comparing pain, as everybody feels it differently in accordance with their own very personal frame of reference).  But dad turned pale, and grimaced to the point of not recognizing him if I hadn’t been there when it happened.  He was immediately scheduled to start radiation to shrink the mass within a couple of hours of the MRI being done and read.   Biopsies were done of various areas in the spine and bone marrow, and the hope was still that dad was going to be able to go to the rehab hospital, and eventually return home.   At least that was what we were aiming for, and “Bob” was optimistic at that point.

Dad was in the hospital for about three weeks before being sent to the rehab hospital (NOT a nursing home with physical and occupational therapy, which are fine for many things, but not intensive rehab).   He was still very understandably terrified, but gave it his all once he knew that the rehab hospital would  only work with him if he could do three hours of therapy a day (broken up into four sessions between PT and OT).   He didn’t believe he’d be OK, but knew he had to work as if he believed if he wanted any chance at going home (with help if needed), and not a nursing home.   So, he worked as hard as he could, and was transferred to Van Matre Rehab Hospital for the next stage in his excruciating journey.

…. on to Part Two.