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.