Old 12-01-18 | 01:57 PM
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canklecat
Me duelen las nalgas
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Joined: Aug 2015
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From: Texas

Bikes: Centurion Ironman, Trek 5900, Univega Via Carisma, Globe Carmel

Dodged a bullet -- maybe: A cautionary tale

This may be most relevant to folks who neglect their own health for various reasons.

I've mentioned my thyroid problems in other threads. Long story short, after surgery in November to remove the swollen left half of the thyroid, pathology found cancer.

I'm meeting with the doctors next week to discuss details and the prognosis. For now they believe they got it all and are recommending annual follow-up ultrasounds of the remaining right half of the thyroid.

It's impossible to say whether this specific problem could have been prevented or avoided with earlier treatment. But the fact is, I neglected my health for years -- more than a decade, in fact. I've been the primary caregiver for three successive older family members -- both grandparents, 10 years apart; then, for 11 years, my mom who died a few weeks ago. My background was in health care, so I was the most logical person to take on this role. While all three family members had good health insurance and access to in-home assistance from nurses and aides, the real life problems are more complicated. In-home aides tend to be unskilled and undependable. As we age don't always make the best decisions about our own care. It helps to have a trusted and reasonably objective family member or friend to at least consult for feedback.

In my case my grandparents were both reasonably alert and cognizant enough to handle most decisions for themselves, other than the last few weeks of life. Both died at home, with assistance from hospice care with my grandmother. My mom was a bigger challenge. In addition to many physical problems she had dementia. From 2006 through 2017 her condition gradually worsened, occasionally getting much worse, then a little better. By January this year, after her fourth knee surgery, it was clear she needed more help than I could handle on my own and Medicare/Medicaid wouldn't cover enough in-home nursing and aides to make up the difference. She spent all year in a nearby nursing home where I could keep an eye on her. She died there in hospice care a few weeks ago.

I fell into the cliched caregiver trap of neglecting my own health. The only time I'd seen a doctor in 17 years was after I was hit by a car in 2001. In addition to the injuries the doctors also discovered I had Hashimoto's, an auto-immune disorder that causes hypothyroidism (not all hypothyroidism is due to Hashimoto's, so the complications are different). I had a prescription for thyroid meds but after I took over as my mom's caregiver in 2006 I neglected to continue taking the meds or to get follow-up blood tests, etc.

In January this year I thought I had the flu, which was unusual in itself. For some reason I rarely get the flu and hadn't bothered with a flu shot in many years. But after more than a month it was apparent this wasn't the flu. It seemed more like my old thyroid problems -- exhaustion, aching, depressed, etc. I found an old prescription for levothyroxine and resumed taking it. Within a few weeks I felt better. By springtime I was strong enough that I was setting some of my fastest Strava times since resuming cycling in 2015, even cracking the top ten on a few tough segments.

In May I was hit by a car, breaking and dislocating my shoulder and re-injuring the neck injury from the 2001 collision. While prepping me for shoulder surgery the anesthesiologist noticed my thyroid was so swollen it was crushing my trachea and esophagus. He recommended against day surgery at their outpatient clinic because I couldn't be intubated -- even an infant's tube wouldn't fit.

I knew my thyroid was swollen but didn't realize how bad it was. It happened so gradually that I was only aware of some difficulty swallowing. It felt like a big oval pill was stuck in my throat, permanently. I didn't notice any breathing problems until I was giving maximum effort during bike rides for interval training or trying to crack the top ten on a Strava segment. I just figured it was my old asthma nemesis.

I registered with the local public health care system, which had been good with my mom so I trusted them. But I got a barely competent nurse practitioner who seemed indifferent and gave bad advice. For some reason she told me I didn't need the thyroid meds and told me to discontinue it. That made no sense to me -- the reason my lab tests were within normal limits was *because* of the thyroid meds. But I didn't want to seem uncooperative so I discontinued the meds.

By late July or early August I was practically incapacitated. The worst came when I could barely crawl across the floor to get to the bathroom. A neighbor drove me to the urgent care clinic where a doctor confirmed my thyroid wasn't functioning. The doctor also wondered why the NP told me to discontinue the thyroid med and put me back on levothyroxine. This time it took almost three months before I began to feel normal.

Meanwhile a friend and younger veteran suggested I sign up for the VA, where he got good care. I had registered with the VA 20 years ago but was rejected because at the time they were underfunded, understaffed and overwhelmed with veterans with combat disabilities -- I had no service connected disability, other than minor back pain from lifting patients (I was a Navy Hospital Corpsman).

But now the VA is more than caught up locally and had actually been mailing me letters for three years inviting me to come in to be evaluated. I'd been so busy with my mom I never got around to it, until I really needed help this year.

Besides the shoulder injury -- wasn't much anyone could do about it but wait for healing and physical therapy -- the thyroid problem was rapidly worsening. Between the community hospital and VA I had four needle biopsies, ultrasounds, and either MRIs or CT scans -- hard to recall because I had so many identical diagnostics for the shoulder and neck injury as well. The biopsies were all inconclusive -- dead, calcified tissue, but none of the biopsies could extract enough tissue to be sure whether there was any cancer. The diagnostics showed nodules and spots that caused concerns, so both ENT docs at the community hospital and VA gave identical recommendations.

I went with the VA for full treatment because their level of care and compassion were surprisingly good. This was a welcomed change from the indifference shown 20 years earlier. I know some younger veterans with service connected disabilities who won't go back to the VA now because of the poor treatment they received 20 or so years ago. I've tried to assure them that our local VA is reformed and doing very well. The hospital facility is dated and some clinics appear overcrowded, notably with older, disabled and homeless vets. But the staff treat everyone with respect and compassion.

Surgery went well -- fortunately the thyroid is literally only skin deep and there were no tendrils to complicate removal. It was technically day surgery but I had no one at home to watch me that night. No problem. The VA provided lodgings the night before surgery (they have a large facility nearby with a short term and permanent nursing home, and rooms for overnight guests like me). And they kept me in the hospital overnight to be sure I was recovered enough to go home. I took the train partway home, where a friend drove me the rest of the way home to skip the long and tiring bus transfers. The TRE train between Fort Worth and Dallas is actually smoother, easier and quicker than driving. But the buses can be slow and tedious.

Not much pain, haven't really needed the pain meds -- maybe twice since surgery 11 days ago. No complications. I've even ridden my bike two or three times, starting two days after surgery. The doctor said it was okay to ride my bike as soon as I felt like it, but to avoid lifting more than 10-15 lbs. My road bike weighs 24 lbs. I interpreted that as a prescription for a carbon fiber bike, but I'm not sure my insurance will pay for that particular mobility device.

However the cancer report from pathology indicates this isn't over. Even if surgery caught it, once you've heard the "C" word it's hard to shake. The doctor doesn't anticipate any long term complications, but with my family history it's reasonable to be concerned. My dad died after 10 years with prostate cancer. And my great-aunt died with leukemia. My grandmother had colon tumors, all benign. I don't recall any other family with cancer but I'm not in contact with some of our large extended family.

I was actually more concerned about the other ailments common to my family members who became sedentary with age and infirmities -- obesity, heart and respiratory disease, and, in my mom's case, dementia. That's the main reason I resumed cycling three years ago. My weight is back to near-optimal, I'm in better physical shape overall, and that probably helped with a quick recovery from surgery.

But I do wonder whether I could have made the last few years easier on myself if I'd seen a doctor sooner, especially taking advantage of the reformed VA's offers.

Anyway, if you're in a similar situation, don't neglect your own health.

One of my local cycling friends is entering the same situation I was in a decade ago. I need to have a sit-down with him to discuss this stuff. We all tell ourselves we know better and, yes, we'll look after ourselves. But men in particular need a buddy to nudge or shove them once in awhile.

Thanks for reading. I always intend to write shorter pieces. Failed again.
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