Psychosocial What?!?

Posted on by MaryO

So, I went to my PCP last week for a followup on my meds after my sky-high blood pressure reading in the ER. The good news is that we finally have my blood pressure at an acceptable leve.

Then, he asked if I was getting enough sleep.

Well…

I told him I usually woke up about 3:00 am to go to the bathroom, then couldn’t get back to sleep so I’d get up to do some computer work. We talked about melatonin and other drugs and I declined for now.  Melatonin sometimes works but I never know when that will be.  I’m not sure I want to get into other meds at this time, either.

Somehow, this discussion morphed into the rest of my life – trying to arrange mom’s service, trying to get her to Maine for burial, my broken thumb, plumbing issue 1 ($$$) and ongoing plumbing issue 2 ($?), DH testing, work, piano students, music rehearsals, and on and on.

So, I came home and checked MyChart.  I saw new words in there I’d never seen before.  Psychosocial stress.  What in the world?

My friend Google says:

“Psychosocial stress is the emotional and physical strain resulting from adverse social situations, interpersonal relationships, or life demands (e.g., job insecurity, discrimination, or traumatic events) that exceed an individual’s coping abilities. It triggers both psychological (anxiety, burnout) and physiological reactions (elevated cortisol, inflammation). Chronic exposure can lead to severe mental and physical health issues, including cardiovascular diseases, depression, and cognitive decline.”

So, I guess he was right – I am psychosocially stressed.  And I don’t see any way out of it in the near term.  Plumbing issue 2 was fixed – finally – Monday so there’s one issue done with.  My mom’s service will happen on Saturday ready or not.

Other than that, the PSS will go on and on and on…

 

Past Monday Anniversaries

Posted on by MaryO

Sharing again this year since it’s another Monday.

Today I am hugely thankful that the last major issue we had here was in 2013 when Tom had his heart attack.  That event caused me to start a whole new blog to post about our experiences.

screenshot-2016-11-05-06-30-59

Adapted from https://maryomedical.com/2013/02/08/the-beginning/

January 27, 2013 was our 40th anniversary.  DH called me and said he was leaving a conference in Washington, DC and we’d go out to brunch when he got home.

The next thing I had heard was that he was in the ER with a suspected heart attack.  I rushed to the ER and found him in his cubicle.  He’d had 3 nitroglycerine pills by then and figured he could go home.

Wrong!  They had him stay overnight at the hospital.  January 28th, they decided to send him by ambulance to Fairfax Hospital for a cardiac catheterization and possible stent.

At the end of that, the surgeon came into my waiting room and said that he needed triple bypass NOW.  Three of the arteries were 100% blocked.  They got me calmed down to see him in the OR.

He was trying to get odds of not doing this surgery and just leaving then.  Finally, I said that he would do this surgery, we weren’t going to fool with this.

I really lost it when they asked me if we had any children and I said 1 son in NYC.  They called him at work in New York and had him get there as soon as possible.  I’m sure he could hear the fear in my voice.

They wheeled DH off for surgery and I waited again.  Luckily, 2 church friends came and sat with me and our pastor arrived about 8:00PM.  Our son arrived about 8:30PM after taking the Acela and a taxi directly to the hospital.

The surgery was over about 9:00PM but when we saw Tom, he was still under anesthesia.  They kept him that way until the next morning since he was too confused when they woke him up.

Long story short (too late!) – he got out of the hospital on the 31st and I played nurse 24/7.   He couldn’t drive/go anywhere for 6 weeks, and then there were 12 weeks of cardiac rehab.

One of the things that came out or cardiac rehab was becoming friendly with 2 other couples (although one of them has since split up).  We go out to dinner every couple months…and none of the surgeons would be happy about our choices.

heart-line

A slightly different take on the events, written 3 weeks later on the same blog.

Icy Days and Mondays…*

* With apologies to Karen Carpenter!

I know I’m not supposed to “relive” events.  I have done that too often with my Cushing’s and cancer adventures and I’m told that reliving causes nearly as much stress as the original event.

So, I plan to write down my memories here and try to let them go…

It all started on Sunday, January 27, 2013 – our 40th wedding anniversary.  I picked up my mom and went to church so I could sing in the choir.  DH went to a meeting of some sort on Benghazi.

After church, I stopped off in the church office for a goodie bag that the Staff Parish Committee had left.

Dropped my mom off at her house and went home.  I put the goodie bag on the dining room table and logged onto the computer to do some work.

I got a couple text messages from DH:

Text message

I figured I’d take a nap until DH came home for that late brunch.

The next thing I hear was my phone ringing, a call from DH.  He was in the ER at Fair Oaks with a heart attack.  OMG!

I immediately leaped up and rushed out the door.  I called one of my pastors and got to the ER in record time.   When I arrived, he was in a bed, all hooked up to monitors, fluids and such.  He was awake and feeling pretty well thanks to the nitroglycerine they had given him immediately after arrival.

When we had a chance to talk, it turned out that he had been in his conference and realized his chest was getting tight.  He found the hotel’s store and bought aspirin – 3 for $11.00 which he thought was extravagant.  He bought them and took them anyway – and probably saved his life.

On the way home, he was feeling pretty good so he stopped at the mall to buy an anniversary gift.  The salesgirl in Zales didn’t know that ruby was the stone for the 40th anniversary and was kind of ribbing DH for waiting until the last minute to buy a gift.  He walked out of there, felt more tightness and headed to the ER…where he called me.

DH was feeling pretty well thanks to the nitroglycerin and aspirin plus whatever else they had in the IV and wanted to go home.  The staff said no way – he had to stay overnight so he could be monitored.

The “automatic clock” on the wall said it was Monday.  Other rooms said Sunday.  Hmmm

A trainee EMT came in to ask some questions as part of his learning process.  Every time DH mentioned the word “Benghazi”, his blood pressure spiked about 40 points or so.  That term became verboten ever after.

My pastor stopped by and we had some nice chats and prayers.

Time passed, tests were done, doctors and nurses stopped by.  Finally, DH was moved to his room upstairs.

About 9 or so I went home and found our dog huddled by the front door – I had left so quickly I hadn’t left her any lights on.  I imagine she was quite worried.

I can’t even remember what I had to eat for dinner but I really wanted something chocolate.  On a whim, I looked in that goodie bag and there was a double-sized brownie.  I think I ate that in record time and it really hit the spot.

Ice

Monday morning (for real!), I checked the weather and found that school was starting late because of icy conditions.  I put on boots and took the dog out.  It seemed to be raining – if it’s raining, it must be warm, right?  So I didn’t really pay attention (and I had other things on my mind!) and completely missed seeing the black ice.

Next thing I knew, I had fallen on one knee, my cell phone in my pocket bruised my other thigh and my left arm hurt where I’d reached out to catch myself.  Luckily, I hadn’t let go of the dog’s leash.

I ended up sitting in a puddle of icy water for a long time, figuring out how to get up.  I finally sort of crawled up the trash can that was sitting in the driveway.

The dog had an abbreviated walk, I changed my wet, cold clothes and headed to the hospital.  I was showing DH my knee and one of the staff bandaged it up for me.  I told him I hadn’t fallen at the hospital and wouldn’t sue but I guess he wanted to be sure.

(Today, Monday February 18, my knee still has a huge lump under the skin and hurts when I touch it, although I’m no longer limping,  The bruise/pain from cell phone finally went away)

The hospital staff decided DH should go to another hospital which is world renowned for its work with heart cases to have a heart catheterization and possible stent.  DH was ready to walk out to my car to drive him to Fairfax Hospital.  He wasn’t thrilled when he was strapped to a gurney and out to an ambulance instead.

I headed over in my car.  They’d changed the entrances to the hospital since the last time I was there and I couldn’t find the “Grey Entrance”.  Finally, after wandering around for a long time, I found it.

I saw DH in the prep room where they got him ready for the heart catheterization – then they rolled him away after explaining all the things that could go wrong.

I went out to the waiting room, got some coffee and a sandwich and hunkered down with my iPad.

Eventually, my beeper went off and I was called back to the room where DH had been prepped.  The surgeon was there this time.  She said that 3 arteries were nearly 100% blocked and they needed to do emergency triple bypass.  They also needed me to convince DH of this since he was figuring he could tough it out.

I started crying but she said I had to get myself together and convince him NOW.  I had to put on scrubs and off I went to the OR.  I got there, DH was on the table trying to figure out the odds if he didn’t do this surgery.  All the medical staff said that he had  a very low chance of survival without the operation.  He still wasn’t sure.  He wasn’t afraid to die.  Tough Guy, Yadda Yadda.

One of the nurses asked me if we had any kids.  I said only one, in NYC.  She said I should call him and get him here ASAP.  She even dialed the number.  I talked to DS at work and he agreed to come right away.  He was pretty scared, too.  He later revealed that he had been crying on the train ride.

I went back to the OR, told DH that DS was coming and that he was going to do the surgery like it or not.  I signed the paperwork and sent him to a very scary surgery.

It was about 4:30 by then and I needed to take the dog out again.  They said I could go home – surgery wouldn’t be over until about 8:00PM or so. Got home, took the dog, made sure that there were lights on, and headed back to the hospital.  Another pastor from my church called.  He said he’d be by the waiting room later.

Two friends from the church office texted me to say they were coming over to sit with me in the waiting room.  They got there about 6:30 and we decided food might be a good thing.  We headed out, following a variety of directions and signs and walked for a l-o-n-g time.

My knee was killing me.  We got to the cafeteria and found out that it was closed.  the 24-hour one was elsewhere.  We finally found that, got some food and my cellphone rang.  The surgeon would be coming out soon to talk to me.

We hustled back to the waiting room and the surgeon came out about 8:00 with good news.  Successful surgery!  DH wasn’t awake yet but we could see him about 9:00PM.

The pastor arrived about 8:30, then DS got there about 8:45.  Finally, they said we could see DH although he still was asleep.  My friends left, pastor and DS went in to see him in ICU, sleeping so peacefully with so many lines attached.  The pastor prayed, then left.  DS and I decided to stay to see DH awake.

About an hour later, the ICU tech said they were going to keep him asleep overnight so we went home.

Monday

Tuesday, January 29 – DS called the hospital fairly early and found that DH was still a bit agitated so they were keeping him under a bit. I took the dog out and we got ready to head back.

I got a call that he was waking up but agitated.  He kept fighting with the nurses on the day of the week.  He kept saying it was Monday, even though it was Tuesday.  Surprise, surprise.  The calendar on the wall hadn’t been changed.  It still read Monday.  No wonder that’s what he thought!

We stayed all day, though nurses, techs, doctor visits and such.  He was in ICU so was monitored very well.  DH was quite confused and repeated himself a lot.  He wasn’t quite sure what had happened.

Monday

Wednesday, January 30.  DH had been moved from ICU into a regular room and we had to follow visiting hours, even though we were family.  We could visit at 11 and had to leave at 1, then back for 6-8.  Actually, this worked out well since I was able to take my first nap since this whole ordeal began.

DH had called DS early in the morning and  said he “needed” his cell phone to make some work calls.  Luckily, DS talked him out of that, saying that he could say some wrong things, given his temporary memory issues.  Thank goodness!  I didn’t want him spending his days talking on the phone.

We got there about 10:45am and they still wouldn’t let us in due to “flu season”.  I’m not sure how we could give him the flu in those 15 minutes before official visiting hours.

I glanced at the whiteboard on the wall where the nurses’ names, doctor’s name and such were written.  Unfortunately, no one had changed this whiteboard since Monday, so that’s what it still said.  <sigh>

We visited – DH got to eat a bit and had started having lines removed.  He thought he might put his shorts on so went into the bathroom to do that.  Unfortunately, he managed to pull the IV out of his hand and bled quite a bit.  The nurse sent him back to bed and said no more of that!

A representative from the group Mended Hearts stopped by with information and a heart-shaped pillow.  They have meetings the first Saturday of the month, so we might go to some of those.

The first pastor dropped by again and we made plans for Friday to pick up DH’s car which was still at the ER.  No one else I know could get it – it’s a standard shift car.

Not much else – visiting, napping, improvements every day.

Not Monday

Finally, it’s not Monday!  Nowhere, nohow.  Just Thursday, January 31 after 4 days of Monday.  Hooray!

DS had a headache so I went to the hospital alone.  He was going to come for the nighttime visiting hours.  As it happened, DH came home this day after lots of testing, last minute X-Ray, discharge notes, complaints about the night nurse…

We got home about 5:00PM.  Yea!

Now the real work began – visiting nurses, medications, doctor visits, rehab.

Since it’s no longer Monday, this post is over 🙂

heart-line

Whew!  There was a lot more after the surgery – visiting nurses, cardiac rehab, so on and on.

I am hugely thankful for my pastors, friends, family, people who brought us dinners, all the doctors, nurses, surgeons, visiting nurses, rehab personal, Mended Hearts, ambulance folks, aspirin, nitroglycerin, insurance, Fair Oaks Hospital, Fairfax Hospital, everyone involved in any way with this escapade.

Five orange pumpkins sit in a row in front of a distressed, wooden background.

What a Week!

Posted on by MaryO

Following last Friday’s Emergency Room Adventure, I have seen both a thumb surgeon and a heart specialist.

Wednesday, was the thumb surgeon.  Surprisingly, he accepted the xrays from the hospital and their diagnosis:

A closed avulsion fracture of the right thumb phalanx means a small piece of bone at the end of a thumb bone (phalanx) broke off, usually where a tendon or ligament attaches, without the skin breaking. Treatment often involves splinting, rest, ice, and physical therapy, aiming for healing within weeks, but surgery might be needed for significant displacement or instability to restore full function, preventing chronic weakness or arthritis.

So far, so good.  He recommended a hand therapist who would make me a custom cast which I will wear for 6 weeks and see him again to decide the next steps.

I have called twice and sent a message to this person with no response.  If I’ve heard nothing by Monday, I guess I’ll have to go to the second recommendation.

 

Yesterday, Friday, I went to the heart specialist.  They actually did call me to remind me that the ER wanted me to have this appointment ASAP.

They redid the EKG, asked lots of questions, took my blood pressure several times.  Now, they’re worried that my blood pressure is possibly too low (112/ 68 mmHg) so they may lower the meds that the hospital gave me.

I still have bloodwork to do, an appointment with them in 2 weeks and another in 6 months.

All in all, really good news.

It Was a Day Like All Days. Or, Was It?

Posted on by MaryO

This is the followup to yesterdays post Good News for Me! Drinking Coffee in the Morning Reduces the Risk for Death.

Friday, January 2, 2026 started normal enough.  I went to Pender to practice my upcoming piano-organ duet with a friend.  Then, I was going to the local stand-alone emergency room to check out my thumb.

No big deal, right?

The practice went well and I went home to pick up DH to go to Inova-GoHealth Urgent Care – Greenbriar to see about my painful thumb.  This is the same thumb from my May 17 post but a different problem.

Last weekend starting Christmas Day until Sunday, December 28 we had been to NYC to visit our son and his family.  Leaving Sunday evening, we got to Moynihan Station to take the train home.  Because I had a rolling suitcase, we took the ramp to the train hall instead of the stairs.

It’s unclear what happened next but I know DH fell on the ramp and knocked me over as well as a sign.  My hand was still wrapped around the handle of the suitcase and was hurting quite a bit.

Fast forward to yesterday – my thumb was still hurting so we headed off to the Inova-GoHealth.  They do the usual, weight, height, review meds, take blood pressure.  A bit high.  Take it again – higher still.  Tech person calls in doctor.  Higher again.  He says that they can’t help me or my thumb.  I have to go to the real hospital emergency room.  NOW.

So, we drive over to the ER.  I found that my keys set off the metal detector. While I was signing in with my referral papers, they called me back to triage.  BP is higher again (mine was now over 200/90!).  White Coat Syndrome, maybe?

 

According to google:
“White coat syndrome (or hypertension) is when your blood pressure spikes to high levels in a doctor’s office due to anxiety or stress about the visit, but returns to normal at home, marked by elevated readings (>140/90 mmHg) in the clinic but normal readings (<135/85 mmHg) elsewhere, requiring home monitoring to prevent misdiagnosis and potential long-term risks like heart issues.”

Symptoms

  • No symptoms at home: The primary sign is normal blood pressure outside the clinic.
  • Anxiety/Stress: Feeling nervous, anxious, or stressed during a medical appointment or when a blood pressure cuff is applied.
  • Elevated readings: Blood pressure consistently over 140/90 mmHg in the office, but below 135/85 mmHg at home.

Causes & Risk Factors

  • Anxiety: The stress and fear associated with medical settings, doctors, or past negative experiences.
  • Stressful environment: The clinical setting itself triggers a physiological stress response.
  • Risk factors for hypertension: Being older, overweight, or having certain chronic conditions can increase risk.

Management & Prevention

  • Home Monitoring: Regularly checking blood pressure at home or using 24-hour ambulatory monitoring to get accurate readings.
  • Stress Reduction: Identifying and addressing the sources of anxiety about doctor visits.
  • Lifestyle Changes: Adopting healthy habits like a good diet, exercise, and managing stress.
  • Provider Communication: Talking to your healthcare team to rule out actual hypertension and avoid unnecessary medication.

Why it matters

  • Misdiagnosis: Can lead to unnecessary hypertension treatment.
  • Increased Risk: Even temporary spikes can strain the heart, potentially increasing long-term risks for heart attack, stroke, and heart failure, say Adventist Health and American Heart Association Journals.

So, I was put in a room and all kinds of tests were started, lots of blood taken, EKG leads applied, more blood pressure monitoring.  This went on for a couple hours, just watching numbers fluctuate.

Then – finally – the long-coveted x-ray of my hand!

Some more monitoring,  Various medical staff told us what some of the numbers meant.  A doctor came in.  One of the staff told him that he was concerned/confused about my EKG results.  The doctor came back and told me that he was going to do a consultation with a cardiac doctor about the EKG.

More monitoring.

The doctor finally came back and said that we could go home.  BUT.  I have to call their cardiac doctor ASAP on Monday morning followed by their recommended Orthopedic Surgeon, followed by my PCP.  I saved some time with all this and arranged the PCP through MyChart.

The nurse came back to remove the EKG leads and give me some Losartan and HCTZ  (hydrochlorothiazide) pills.  I couldn’t hold the water to take the pills so I handed it to DH.  Of course, he immediately started drinking my pill water.

Got the water back, clothes back on and finally on our way home.

Total time: 7 hours.

Test results

And that thumb?

An avulsion fracture fragment.  Google says: “An avulsed fracture fragment is a small piece of bone that breaks off from the main bone, pulled away by a strong force exerted by a tendon or ligament, often during sudden movements in sports, leading to pain, swelling, and instability, with treatment ranging from rest and casting for small fragments to surgery if the fragment is large or significantly displaced”.

Everything else normal except “Regarding her elevated blood pressure, patient has some interesting changes in her EKG while she is here including left bundle branch block but then back to sinus rhythm. No cardiac symptoms. Cardiac workup otherwise reassuring including troponin. Normal creatinine in regards to elevated blood pressure. I will discuss with Virginia Heart cardiology but generally with think that discharge on blood pressure medication outpatient follow-up might be reasonable”.

So,

Maybe more after the cardiologist, maybe surgery after the Orthopedic Surgeon, maybe just a weird day for me.

Good News for Me! Drinking Coffee in the Morning Reduces the Risk for Death

Posted on by MaryO

Did drinking coffee save my life yesterday?  More on that after I reflect more on the events of the last 24 hours.

This morning, from my email:

Drinking Coffee in the Morning Reduces the Risk for Death

Key takeaways:

  • Morning coffee drinkers had a 16% risk reduction for death from all causes.
  • Morning coffee drinkers who consumed between over two to three or more cups achieved the greatest benefits.

People who drink coffee in the morning have a lower risk for death from all causes compared with those who do not drink coffee at all, results from an observational cohort study published in the European Heart Journal showed.

The association between morning coffee consumption and reduced mortality risk appeared especially strong with respect to CVD, according to researchers. Meanwhile, the analysis revealed that those who drank coffee throughout the day did not achieve the same mortality benefits as morning drinkers.

“While moderate coffee drinking has been recommended for the beneficial relations with health based on previous studies, primary care providers [should] be informed that the time of coffee drinking also matters, beyond the amounts consumed,” Lu Qi, MD, PhD, a professor at Tulane University Celia Scott Weatherhead School of Public Health and Tropical Medicine, told Healio.

Current research suggests that coffee consumption “doesn’t raise the risk of cardiovascular disease, and it seems to lower the risk of some chronic diseases, such as type 2 diabetes,” Qi said in a press release.

“Given the effects that caffeine has on our bodies, we wanted to see if the time of day when you drink coffee has any impact on heart health.”

In the study, Qi and colleagues assessed links between mortality and coffee consumption — including the volume and timing — using data from the National Health and Nutrition Examination Survey from 1999 to 2018.

The analysis comprised 40,725 adults who had given dietary data of what they consumed on at least one day. This included a subgroup of 1,463 adults who completed a detailed food and drink diary for an entire week.

Overall, 48% of the cohort did not drink coffee, 36% had a morning-type coffee drinking pattern — primarily drinking from 4 a.m. to 11:59 a.m. — and 16% had an all-day drinking pattern.

The researchers found that, after adjusting for factors like sleep hours and caffeinated and decaffeinated coffee intake amounts, morning coffee drinkers were 16% (HR = 0.84; 95% CI, 0.74-0.95) less likely to die of any cause and 31% (HR = 0.69; 95% CI, 0.55-0.87) less likely to die from CVD compared with those who did not drink coffee.

People who drank coffee all day did not have any risk reductions vs. those who did not drink coffee.

The amount of coffee consumed among morning drinkers also influenced risk reductions, as researchers reported HRs for all-cause mortality of:

  • 0.85 (95% CI, 0.71-1.01) among those who consumed more than zero to one cup;
  • 0.84 (95% CI, 0.73-0.96) among those who consumed more than one to two cups;
  • 0.72 (95% CI, 0.6-0.86) among those who consumed more than two to three cups; and
  • 0.79 (95% CI, 0.65-0.97) among those who consumed more than three cups.

Study results showed similar patterns for mortality from CVD, “but the interaction term was not significant,” Qi and colleagues wrote.

The researchers identified a couple of study limitations. For example, the analysis used self-reported dietary data, opening the potential for recall bias, while they also could not rule out possible residual and unmeasured cofounders.

The study did not explain why morning coffee consumption reduced the risk for death from CVD, Qi said in the release.

“A possible explanation is that consuming coffee in the afternoon or evening may disrupt circadian rhythms and levels of hormones such as melatonin,” he said. “This, in turn, leads to changes in cardiovascular risk factors such as inflammation and [BP].”

Qi told Healio that regarding future research, “more studies are needed to investigate coffee drinking timing with other health outcomes, in different populations, and clinical trials would be helpful to provide evidence for causality.”

References:

Sources/Disclosures

Source:

Wang X, et al. Eur Heart J. et al. 2025;doi:10.1093/eurheartj/ehae871.

From https://www.healio.com/news/primary-care/20250110/drinking-coffee-in-the-morning-reduces-the-risk-for-death?utm_source=selligent&utm_medium=email&utm_campaign=20260103HM&utm_content=20260103HM

38 Years Cushing’s Free!

Posted on by MaryO

Today is the 38th anniversary of my pituitary surgery at NIH.

As one can imagine, it hasn’t been all happiness and light.  Most of my journey has been documented here and on the message boards – and elsewhere around the web.

My Cushing’s has been in remission for most of these 30 years.  Due to scarring from my pituitary surgery, I developed adrenal insufficiency.

I took growth hormone for a while.

When I got kidney cancer, I had to stop the GH, even though no doctor would admit to any connection between the two.  Even though I’m when I got to 10 years NED (no evidence of disease) from cancer, I couldn’t go back on the GH.

However, this year I went back on it (Omnitrope this time) in late June.  Hooray!  I still don’t know if it’s going to work but I have high hopes.  I am posting some of how that’s going here.

During that surgery, doctors removed my left kidney, my adrenal gland, and some lymph nodes.  Thankfully, the cancer was contained – but my adrenal insufficiency is even more severe than it was.

In the last couple years, I’ve developed ongoing knee issues.  Because of my cortisol use to keep the AI at bay, my endocrinologist doesn’t want me to get a cortisone injection in my knee.

My mom has moved in with us, bring some challenges…

But, this is a post about Giving Thanks.  The series will be continued on this blog unless I give thanks about something else Cushing’s related 🙂

I am so thankful that in 1987 the NIH existed and that my endo knew enough to send me there.

I am thankful for Dr. Ed Oldfield, my pituitary neurosurgeon at NIH.  Unfortunately, Dr. Oldfield died a couple months ago.

I’m thankful for Dr. Harvey Cushing and all the work he did.  Otherwise, I might be the fat lady in Ringling Brothers now.

To be continued in the following days here at http://www.maryo.co/

Other Stuff, Part 1: Cushing’s

Posted on by MaryO

Based on one of the comments for my first post (The Beginning), I’m going to mention some of our past medical misadventures here, too.

This one was mine, and it was a doozy!

Seven Dwarves of Cushing's

From a recent post on one of my blogs: A Quarter of a Century

I had my one, and only, pituitary surgery on this date in 1987.  Of course, I was trying to get a diagnosis for several years before that.

I know it’s hard to get a diagnosis now – imagine how hard it was over 30 years ago – before the Internet, Facebook, Twitter, message boards, chatrooms.  No online support – no support anywhere.

Finding any information possible at the Public Library.  Days that you feel like death warmed over, heading out to the library to Xerox medical articles you don’t understand, poring over them at home, trying to find any kernel of hope for what you have.  Then trying to convince doctors when your family doesn’t even believe you.

Finally, a doctor believes you…but he’s the wrong kind of doctor so he sends you away.  Another year goes by.  The endo recommends surgery but there are only 3 possibilities anywhere.  NIH – close by and free, Montreal – they speak French – and San Francisco.

After a diagnosis, 6 weeks of inpatient testing at the NIH.

From my bio at http://www.cushings-help.com/maryos_story.htm

There were about 12 of us there and it was nice not to be alone with this mystery disease. Many of these Cushies (mostly women) were getting bald, couldn’t walk, having strokes, had diabetes. One was blind, one had a heart attack while I was there. Towards the end of my testing period, I was looking forward to the surgery just to get this whole mess over with. While I was at NIH, I was gaining about a pound a day!

The MRI still showed nothing, so they did a Petrosal Sinus Sampling Test. That scared me more than the prospect of surgery. (This test carries the risk of stroke and uncontrollable bleeding from the incision points.) Catheters were fed from my groin area to my pituitary gland and dye was injected. I could watch the whole procedure on monitors. I could not move during this test or for several hours afterwards to prevent uncontrolable bleeding from a major artery. The test did show where the tumor probably was located. Also done were more sophisticated dexamethasone suppression tests where drugs were administered by IV and blood was drawn every hour (they put a heplock in my arm so they don’t have to keep sticking me). I got to go home for a weekend and then went back for the surgery – the Transsphenoidal Resection. I fully expected to die during surgery (and didn’t care if I did) so I signed my will and wrote last letters to those I wanted to say goodbye to. During the time I was home just before surgery, a college classmate of mine (I didn’t know her) did die at NIH of a Cushing’s-related problem. I’m so glad I didn’t find out until a couple months later!

November 3, 1987, the surgeon, Dr. Ed Oldfield, cut the gum above my front teeth under my upper lip so there is no scar. He used tiny tools and microscopes. My tumor was removed successfully. In some cases (not mine) the surgeon uses a plug of fat from the abdomen to help seal the cut. Afterwards, I was in intensive care overnight and went to a neurology ward for a few days until I could walk without being dizzy. I had some major headaches for a day or two but they gave me drugs (morphine) for those. Also, I had cotton plugs in my nostrils. It was a big day when they came out. I had diabetes insipidus (DI) for a little while, but that went away by itself – thank goodness!

I had to use a foam product called “Toothies” to brush my teeth without hitting the incision. Before they let me go home, I had to learn to give myself an injection in my thigh. They sent me home with a supply of injectible cortisone in case my level ever fell too low (it didn’t). I was weaned gradually off cortisone pills (scary). I now take no medications. I had to get a Medic Alert bracelet. I will always need to tell medical staff when I have any kind of procedure – the effects of my excess cortisone will remain forever.

I went back to the NIH for several follow-up visits of a week each where they did all the blood and urine testing again. After a few years NIH set me free. Now I go to my “outside” endocrinologist every year for the dexamethasone suppression test, 24-hour urine and regular blood testing.

As I get further away from my surgery, I have less and less chance that my tumor will grow back. I have never lost all the weight I gained and I still have the hair on my chin but most of my other symptoms are gone. I am still and always tired and need a nap most days. I do not, however, still need to take whole days off just to sleep.

I consider myself very lucky that I was treated before I got as bad as some of the others on my floor at NIH but think it is crazy that these symptoms are not taken seriously by doctors.

 

My whole, long journey with diagnosing and treating Cushings can be found in my bio at https://cushingsbios.com/2025/10/28/maryo-pituitary-bio/

Other Cushing’s sites.

Pituitary Tumor Affecting The Optic Chiasm?

Posted on by MaryO

I went to a new eye doctor recently and mentioned that I’d had pituitary surgery in 1987.  She asked me if I ever had a visual field test and I think I said something like DUH!.  No one has ever mentioned this to me even though I’ve been seeing eye doctors forever, long before my Cushing’s.

She said that she sees many(!?!) patients with pituitary tumors and the tumor can cause issues by pressing on the optic chiasm.  This was all news to me.

It seems like this would not be an issue all these years later but I think I’m going to do the test anyway.

Has anyone else been tested?  What were the results?

Of course I came home and looked this up.

Google AI said:

A pituitary tumor, also known as a pituitary adenoma, can cause significant vision problems by compressing the optic chiasm. The optic chiasm is a structure at the base of the brain where the optic nerves from each eye cross and transmit visual information to the brain. A large tumor (macroadenoma) growing upward from the pituitary gland can press on these nerves, disrupting vision. 

Pituitary Tumors | Barrow Neurological Institute
Can Pituitary Tumours Cause Eye Problems?
Pituitary Gland Location and Main Functions | Barrow ...
Pituitary Tumors – NOVEL
Pituitary Gland Function: Anatomy & Function of the Master ...

Symptoms of optic chiasm compression

Visual symptoms often develop gradually, and a person may not notice changes until the vision loss is advanced. Common signs and symptoms include: 

  • Loss of peripheral vision: The classic symptom is bitemporal hemianopsia, which is the loss of vision on the outer (temporal) side of both visual fields, corresponding to the fibers that cross at the chiasm.
  • Blurred vision: A decrease in central visual acuity can occur, especially if the tumor also compresses one of the optic nerves.
  • Loss of color vision: A reduced ability to perceive colors (dyschromatopsia) is another possible symptom.
  • Headaches: The pressure from a growing tumor on surrounding structures can cause headaches, which are one of the most common symptoms reported by patients.
  • Double vision (diplopia): This may occur if the tumor expands laterally and compresses the cranial nerves that control eye movement.
  • Pituitary apoplexy: A sudden hemorrhage into the tumor can cause an acute, severe headache and rapid vision loss, which is a medical emergency. 

Diagnosis

To determine the extent of optic chiasm compression, a medical team will perform several diagnostic steps:

  • Comprehensive eye exam: An ophthalmologist or neuro-ophthalmologist will perform a visual acuity test to measure central vision and a visual field test to map out the entire field of vision.
  • Optical coherence tomography (OCT): This imaging technique can measure the thickness of the retinal nerve fiber layer, which helps detect damage to the optic nerve from chronic pressure.
  • Neuroimaging: An MRI of the brain with and without contrast is the preferred method to visualize the tumor, confirm its size, and see its proximity to the optic nerves and chiasm.
  • Endocrine workup: Blood tests are necessary to check hormone levels, especially for tumors that secrete excess hormones, such as prolactin. 

Treatment and prognosis

The treatment for optic chiasm compression depends on the tumor’s size, type, and growth pattern. Early diagnosis and treatment offer the best chance for vision recovery. 

  • Medication: For prolactin-secreting tumors (prolactinomas), medication such as cabergoline can often shrink the tumor and relieve pressure on the optic chiasm, potentially restoring vision without surgery.
  • Surgery: The most common approach for tumors that compress the optic chiasm is surgical resection, often performed through the nose using a minimally invasive transsphenoidal approach.
  • Radiation therapy: This may be used as a secondary treatment if surgery is not fully successful, or for tumors that cannot be treated with medication.
  • Prognosis: Recovery of vision is common after successful treatment, especially if the compression has not been long-standing. Many patients experience a significant improvement in their visual field. Long-term monitoring with regular MRI scans and visual field tests is necessary to check for tumor regrowth. 

National Cancer Survivor’s Day

Posted on by MaryO

Observed annually on the first Sunday in June, National Cancer Survivor’s Day has been set aside to “demonstrate that life after a cancer diagnosis can be a reality.”

Each year on National Cancer Survivor’s Day, events and celebrations are held and hosted around the United States by local communities, hospitals and support groups honoring cancer survivors.  Events may include parades, carnivals, art exhibits, contests and testimonies. President George W. Bush and the National Cancer Institute director each included a commencement at the 2008 celebration.

So today is my day and my mom’s day and countless other people’s day.  I’m a kidney cancer survivor – 19 years now!  Also squamous cell carcinoma for me.

My mom survived colon cancer TWICE

My sister-in-law survived breast cancer TWICE

My DH survived melanoma and is working hard at surviving prostate cancer.

It hasn’t been all good though.  There have been many more in my extended family who did not survive, including my dad and my aunt. 

Congratulations to the survivors on this special “Who Knew” holiday, National Cancer Survivor’s Day

Will the Days of Hitchhiking Return?

Posted on by MaryO

 

Yesterday (May 16, 2025), I had an appointment with a new-to-me hand and wrist doctor for pain I’m having in my right thumb.  As a pianist/organist/bell ringer/balalaika-ist this isn’t a good place to have pain.

I even have a handle on my coffee cup that’s giving me pain so I’ll have to drink left-handed for a while.

Of course, the first thing they did was take x-rays.  The tech put my hand in all kinds of positions I didn’t know were available and asked me to hold them.  I’m sure that  these didn’t help my pain at all.

The x-rays showed:

Arthritis of carpometacarpal (CMC) joint of right thumb, Degenerative arthritis of metacarpophalangeal joint of right thumb, and Degenerative arthritis of interphalangeal joint of right thumb.

Ok, then.

The doctor came in and asked questions, touched, pushed, pulled places on my thumb – “Does this hurt?”  DUH

 

There were the usual 3 options.  Brace/Voltaren, injection, surgery (Trapeziectomy).

Google AI Says:

This surgical procedure, commonly known as trapeziectomy with ligament reconstruction and tendon interposition (LRTI) or suspensionplasty, is used to treat thumb carpometacarpal (CMC) joint arthritis. It involves removing the trapezium bone, a small bone at the base of the thumb, and then either suspending the thumb’s metacarpal bone (the bone in the thumb) to the second metacarpal bone with a suture or tendon or using a tendon to support the thumb metacarpal base. 

Here’s a more detailed explanation: 

1. The Problem:

  • Thumb CMC joint arthritis causes pain, stiffness, and limited movement in the thumb. 
  • The trapezium bone is a key part of this joint and can become damaged or worn out due to arthritis. 

2. The Procedure:

  • Trapeziectomy:
    The surgeon makes an incision near the thumb’s CMC joint and carefully removes the trapezium bone. 

  • Suspension:
    To prevent the thumb metacarpal bone from collapsing into the space where the trapezium was, the surgeon often uses one of two methods:
    • Suture Suspension: A suture is used to connect the first metacarpal bone to the second metacarpal bone, providing support. 
    • Tendon Interposition: A tendon is used to support the thumb metacarpal base and act as a replacement for the trapezium. 

  • Other Procedures:
    In some cases, other procedures may be performed to further improve stability or function. 

3. Benefits:

Reduced pain and improved thumb function, Increased thumb mobility and flexibility, and Better grip and pinch strength. 

4. Potential Risks:

  • Continued pain, swelling, stiffness, or weakness.
  • Nerve damage and numbness.
  • Scarring.
  • Infection.
  • Bleeding.
  • Allergic reactions. 

trapeziectomy-factsheet

So, yesterday, I opted for everything except surgery…for now.

First up was the dreaded injection.  I’d read on some message boards and found out from some friends that this “could” be painful.  Major DUH.

As usual, the doctor froze the skin with lidocaine (XYLOCAINE), then injected Betamethasone (CELESTONE) into the carpometacarpal (CMC) joint of right thumb.  This was a new steroid for me so…

Celestone Soluspan is a steroid that prevents the release of substances in the body that cause inflammation.

Celestone Soluspan is used to treat many different inflammatory conditions such as allergic reactions, ulcerative colitis, arthritis, lupus, multiple sclerosis, inflammation of the joints or tendons, and problems caused by low adrenal gland hormone levels.

Celestone Soluspan may also be used for other purposes not listed in this medication guide.

From drugs.com

 

I showed the doctor the brace I had been using.  Years ago with my knee issues, I discovered BioSkin braces for people –

like me who are allergic to neoprene among other things.

Of course, the one I showed him was a reject, being more for carpal tunnel so he “gave” me a thumb spica.  I said “gave” in quotes because they billed me $105.  Presumably, insurance will pay.  I looked it up on the brace company website and found that it would have cost me $45 to buy from them.  Nice markup!

The new spica worked well – I’m to wear that during the day – but I can tell I was starting to itch, so I ordered the BioSkin version from amazon.  That won’t come for a couple weeks, though, so I’ll be itching some.

The doctor also recommended icing for 20 minutes at a time several times a day.  I told him I’d bought a thumb freezer gel pack and he’d never heard of that.  Maybe I’ll take one in next time.

Looking at past posts in this blog, I found that thumb issues have been going on since 2018 but I guess that what the ER did then worked until now!

Hopefully, I get another 8 years out of this visit!