Mom and me, w-a-a-a-y back in sepia, black and white photo times…
My mom is 100 years old in 2024! Happy Mother’s Day, Mom š
May 09
Irony
18 years ago today, I had my left kidney and 10 pounds of cancer removed. Ā This anniversary is, of course, a bigĀ 
A few weeks before that surgery, I had returned to Johns Hopkins to be retested for Growth Hormone. Ā There’s a whole lot of info on my past experiences with HGHĀ in my bio atĀ https://cushingsbios.com/2013/04/29/maryo-pituitary-bio/Ā This excerpt is from that blog post:
Wow, what a nightmare my argenine retest started! I went back for that Thursday, April 27, 2006. Although the test was shorter, I got back to my hotel and just slept and slept. I was so glad that I hadnāt decided to go home after the test.
Friday I felt fine and drove back home, no problem. I picked up my husband for a biopsy and took him to an outpatient surgical center. While I was there waiting for the biopsy to be completed, I started noticing blood in my urine and major abdominal cramps. I left messages for several of my doctors on what I should do. I finally decided to see my PCP after I got my husband home.
When Tom was done with his testing, his doctor took one look at me and asked if I wanted an ambulance. I said no, that I thought I could make it to the emergency room ok ā Tom couldnāt drive because of the anaesthetic they had given him. I barely made it to the ER and left the car with Tom to park. Tomās doctor followed us to the ER and became my new doctor.
They took me in pretty fast since I was in so much pain, and had the blood in my urine. They thought it was a kidney stone. After a CT scan, my new doctor said that, yes, I had a kidney stone but it wasnāt the worst of my problems, that I had kidney cancer. Wow, what a surprise that was! I was admitted to that hospital, had more CT scans, MRIs, bone scans, they looked everywhere.
My open radical nephrectomy was May 9, 2006 in another hospital from the one where the initial diagnosis was made. My surgeon felt that he needed a specialist from that hospital because he believed preop that my tumor had invaded into the vena cava because of its appearance on the various scans. Luckily, that was not the case.
My entire left kidney and the encapsulated cancer (10 pounds worth!) were removed, along with my left adrenal gland and some lymph nodes. Although the cancer (renal cell carcinoma AKA RCC) was very close to hemorrhaging, the surgeon believes he got it all. He said I was so lucky. If the surgery had been delayed any longer, the outcome would have been much different. I will be repeating the CT scans every 3 months, just to be sure that there is no cancer hiding anywhere. As it turns out, I can never say Iām cured, just NED (no evidence of disease). This thing can recur at any time, anywhere in my body.
I credit the argenine re-test with somehow aggravating my kidneys and revealing this cancer. Before the test, I had no clue that there was any problem. The argenine test showed that my IGF is still low but due to the kidney cancer I cannot take my growth hormone for another 5 years ā so the test was useless anyway, except to hasten this newest diagnosis.
So, how am I “celebrating” my cancer anniversary? Yes, I’m retesting to see if I can go back on growth hormone, the drug that either helped my cancer to grow or helped diagnose it.
May 08
See the Little Icon in Your Browser?
If you see it, you probably know what it is because you installed a browser extension called something like “X-Clacks-Overhead” in memoryĀ of Terry Pratchett. Ā If you click on it, it says “GNU Terry Pratchett”
What in the world?
The GNU Terry Pratchett plugin transmits an “X-Clacks-Overhead” header reading, āGNU Terry Pratchettā so that Terryās name is whispered forevermore in the Internetās āoverheadā.
In Pratchettās book āGoing Postalā, workers who die in the line of duty have their names transmitted up and down the Discworldās telegraph system as a tribute.
From Going Postal:
āWe keep that name moving in the Overhead,ā he said, and it seemed to Princess that the wind in the shutter arrays above her blew more forlornly, and the everlasting clicking of the shutters grew more urgent. āHeād never have wanted to go home. He was a real linesman. His name is in the code, in the wind in the rigging and the shutters. Havenāt you ever heard the saying: āA manās not dead while his name is still spokenā?ā
What does the GNU stand for?
In Going Postal, the G means that the message should be passed on, the N means āNot Loggedā, and the U means that it should be turned around at the end of the line.
GNU Terry Pratchett
May 01
Happy Beltane!
Summer inĀ Edinburgh,Ā Scotland, kicks off with an evening of whimsical revelry. Colorful characters parade atop a hill, dancing and marching to the beat of pounding drums. Fires blaze, warming the air with their bright, smoky flames.
Beltane or Beltain is the Gaelic May Day festival. Most commonly it is held on 1 May, or about halfway between the spring equinox and the summer solstice.
Also known asĀ CĆ©tshamhainĀ (“first of summer”), it marked the beginning ofĀ summerĀ and was when cattle wereĀ driven outĀ to the summer pastures. Rituals were performed to protect the cattle, crops and people, and to encourage growth.
SpecialĀ bonfiresĀ were kindled, and their flames, smoke and ashes were deemed to have protective powers. The people and their cattle would walk around or between bonfires, and sometimes leap over the flames or embers. All household fires would be doused and then re-lit from the Beltane bonfire.
These gatherings would be accompanied by a feast, and some of the food and drink would be offered. Doors, windows, byres and livestock would be decorated with yellow May flowers, perhaps because they evoked fire.
Apr 30
It’s National Bugs Bunny Day!
National Bugs Bunny Day is observed each year on April 30. Ā Bugs Bunny is the famous cartoon character best remembered for his roles in Looney Tunes and Merrie Melodies produced by Warner Bros. Ā He is known Ā for his popular catchphrase āWhatās up, doc?ā
Bugs Bunny first appeared in a shortĀ film on April 30, 1938, and has since been enjoyed by millions of viewers.
Apr 30
Really?? It’s National Bubble Tea Day
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I love bubble tea (aka boba tea) and I’m so glad there’s a day for it.Ā At one point, I considered buying a machine to make my own.Ā Amazon now sells premade boba (of course!)
In the 1980s, the Taiwanese developed a beverage combining the refreshing goodness of tea, the wholesome creaminess of milk and the fun, delicious surprise of bubbles. The bubbles, also known as boba or pearls, are made from tapioca. The tea can be created with or without milk, ice, sugar, and toppings.
Apr 16
Culloden
The Battle of Culloden was the final confrontation of the Jacobite rising of 1745.
On this date, 16 April 1746, the Jacobite army of Charles Edward Stuart was decisively defeated by a British government force under Prince William Augustus, Duke of Cumberland, on Drummossie Moor near Inverness in the Scottish Highlands.
1250 Jacobites died at the battle, and almost as many were wounded with 376 taken prisoner (those who were professional soldiers or who were worth a ransom). The government troops lost 50 men while around 300 were wounded.
I took the photos below when we visited Culloden in 2023.
Cushing’s
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What I'm Doing for Rare Disease DayEach and every day since 1987, I tell anyone who will listen about Cushingās...
- ā¹ļø Cushing's Disease BasicsCushing's Disease is a rare condition caused by excessive production of cortisol, a hormone essential for various bodily functions. It is a specific form of Cushing's Syndrome, where the overproduction of cortisol is due to a tumor in the pituitary gland. The condition affects 10 to 15 people per million each year, predominantly women between […]
- āļø Rare Disease Day 2026: MaryO, Pituitary/Adrenal Insufficiency/Kidney Cancer BioFor all of my early life, I was the good, compliant, patient. I took whatever pills the doctor prescribed, did whatever tests h/she (most always aĀ HE) wrote for. Believed that whatever he said was the absolute truth. He had been to med school. He knew what was wrong with me even though he didn't live […]
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Today is Rare Disease DayToday is Rare Disease Day. Learn all about Cushing's Disease at http://www.cushings-help.com/
- š° Disease Remission and Surgical Outcomes of Endoscopic Transsphenoidal Surgery for Cushing Disease: A Single Center ExperienceTranssphenoidal surgery is the primary treatment for patients with Cushing disease (CD). This study assessed the surgical and endocrinologic outcomes of patients with CD following endoscopic pituitary surgery using strict biochemical criteria to guide surveillance in patients not achieving early remission.
- š Save the Date: Menopause: new approach to management on Sunday February 22 2026 at 6 PMMenopause: new approach to management Theodore Friedman, MD, PhD will be giving a GoodHormoneHealth webinar on Menopause
- š Save the Date: Pituitary Adenoma Education Da1 February 22 2026Donāt miss this opportunity to learn from Mayo Clinic specialists.
- š° BIPSS Diagnostic Method May Cause False Positive in Some Cases of Cyclic Cushingās SyndromeA diagnostic technique calledĀ bilateral inferior petrosal sinus samplingĀ (BIPSS), which measures the levels of theĀ adrenocorticotropic hormoneĀ (ACTH) produced by theĀ pituitary gland, should only be used to diagnose cyclicĀ Cushingās syndromeĀ patients during periods of cortisol excess, a case report shows. When it is used during a spontaneous remission period of cycling Cushingās syndrome, this kind of sampling can lead […]
- š° Metabolomic Biomarkers in Urine of Cushingās Syndrome PatientsCushingās syndrome (CS) is a disease which results from excessive levels of cortisol in the human body. The disorder is associated with various signs and symptoms which are also common for the general population not suffering from compound hypersecretion. Thus, more sensitive and selective methods are required for the diagnosis of CS.
- ā¹ļø Understanding Cortisol: The Stress Hormone ExplainedCortisol testing is not routinely done during medical check-ups, and there currently arenāt any at-home tests available to assess cortisol levels. Most healthcare providers only recommend testing for cortisol if there are symptoms indicative of conditions like Cushingās syndrome.
Music and Local Events
- š„ March Forth/FourthToday would probably have been a better day for the Music Man post since itās about marching forth on March Fourth.
- š National Grammar DayNational Grammar Day is observed across the United States each year on March 4th. According to Global Language Monitor, the estimated number of words in the English language is 1,025,109. There is some controversy to that number, but itās safe to say it is over a million.
- ā¦ļø Lenten Hymn and Devotion, Week 3Brian Stevenson, Pender UMC Director of Handbells and Ensembles, presents a series of hymn-based devotions at noon on Wednesdays during Lent. The Third Hymn-based Devotion is When I Survey the Wondrous Cross
- š„ The Music ManRemembering all the words is no small feat. I first started collecting records (yes, records!) of musicals when I was in high school in Springfield, MA. Our library had an outstanding record collection, but I could only check out one (or 2?) at a time. I would bring my record(s) home, and listen to them […]
- š¹ A Parentās Guide to Piano MaestroIt will be fun watching your child improve their piano skills all while having fun using Piano Maestro in lessons each week! As your childās teacher (or YOUR teacher!), Iām looking forward to seeing the progress they will make when they start using it at home each day. This guide will help you understand how […]
- š¦ Rare Disease DayThis day is more than a call to awareness; it's a global movement aimed at bridging the gap between isolation and community, despair and hope, challenges and solutions.
- š¹ Technic Series: Scales and ArpeggiosAn arpeggio (it. /arĖpeddŹo/) is a musical technique where notes in a chord are played or sung in sequence, one after the other, rather than being played together like a chord. This word comes from the Italian word āarpeggiareā, which means āto play on a harpā. An alternative translation of this term is ābroken chordā.
- ā¦ļø Lenten Hymn and Devotion, Week 2Brian Stevenson, Pender UMC Director of Handbells and Ensembles, presents a series of hymn-based devotions at noon on Wednesdays during Lent. The Second Hymn-based Devotion is Ah, Holy Jesus.
- š Practice Pie: The Step-By-Step Guide To Helping Your Child Enjoy Their Music PracticeIn Practice Pie, Iāll teach you how to support your child in their musical journey. I canāt promise it will be as easy as pie (but then, is pie really easy?) but I can promise to make it quick and practical, with a little humour thrown in for good measure.
- š„ Fun with Music for Preschoolers, MondayStep into a world of giggles and song with āFun with Music" at Pender!Ā This is not just any music class ā it's a journey through sound and imagination designed especially for preschoolers and their favorite grown-ups. Since 2013, Jim and Roberta Pont have been creating a space where tiny toes tap, and little voices […]