Uh, Oh – I’m nearly a day late (and a dollar short?)…and I’m not yet sure what today’s topic will be. Â I seem swamped by everything lately, waking up tired, napping, going to bed tired, waking up in the middle of the night, starting all over again…and my DH was diagnosed with cancer which makes everything more hectic and tiring.
It’s been like this since I was being diagnosed with Cushing’s in the mid-1980’s. Â You’d think things would be improved in the last 38 years. Â But, no.
My mind wants things to have improved, so I’ve taken on more challenges, and my Mom and DH have provided some for me (see one of my other blogs, MaryOMedical).
Thank goodness, I have only part-time jobs (5 0f them!), that I can mostly do from home. Â I don’t know how anyone post-Cushing’s could manage a full-time job!
I can see this post morphing into the topic “My Dream Day“…
I’d wake up refreshed and really awake at about 7:00AM and take the dog out for a brisk run.
Get home about 8:00AM and start on my website work.
Later in the morning, I’d get some bills paid – and there would be enough money to do so!
After lunch, out with the dog again, then practice the piano some, read a bit, finish up the website work, teach a few piano students, work on my church jobs, then dinner.
After dinner, check email, out with the dog, maybe handbell, balalaika or choir practice, a bit of TV, then bed about 10PM
Nothing fancy but NO NAPS. Â Work would be getting done, time for hobbies, 3 healthy meals.
Just a normal life that so many take for granted. Or, do they?
“Give yourself, your condition, or your health focus a mascot. Is it a real person? Fictional? Mythical being? Describe them. Bonus points if you provide a visual!”
Our “Official mascot” is the zebra.
Our mascot
In med school, student doctors are told âWhen you hear hoofbeats, think horses, not zebrasâ.
According to Wikipedia: âZebra is a medical slang term for a surprising diagnosis. Although rare diseases are, in general, surprising when they are encountered, other diseases can be surprising in a particular person and time, and so âzebraâ is the broader concept.
The term derives from the aphorism ‘When you hear hoofbeats behind you, donât expect to see a zebra’, which was coined in a slightly modified form in the late 1940s by Dr. Theodore Woodward, a former professor at the University of Maryland School of Medicine in Baltimore.  Since horses are the most commonly encountered hoofed animal and zebras are very rare, logically you could confidently guess that the animal making the hoofbeats is probably a horse.
A zebra cup my DH bought me đ
By 1960, the aphorism was widely known in medical circles.â
Why? Because those of us who DO have a rare disorder know from personal experience what it feels like to be dismissed by a doctor or in many cases, multiple doctors. Many physicians have completely lost the ability to even imagine that zebras may exist!  Cushing’s is too rare – you couldn’t possible have that.  Well… rare means some people get it.  Why couldn’t it be me?
Although one of my signature images has a zebra, many have rainbows or butterflies in them so I guess that I consider those my own personal mascots.
I have a special affinity for rainbows. To me, a rainbow is a sign that things are going to be ok.
Years ago, our little family was in Florida. I felt guilty about going because my dad was terminally ill with his second bout of colon cancer. I was worried about him and said a little prayer for him.
I was lying on the beach while DH and our son were in the ocean and I looked up and saw a rainbow. It was a perfectly clear, sunny afternoon. I even called the people out of the water, in case it was something I wanted to see that didn’t really exist. They saw it, too.
Where in the world did that rainbow come from, if it wasn’t a sign that everything would be ok?
Butterflies are something else again. Â I like them because I would like to think that my life has evolved like a butterfly’s, from something ugly and unattractive to something a big easier on the eye.
My Cushie self was the caterpillar, post-op is more butterfly-ish, if not in looks, in good deeds.
For as long as I can remember, I’ve loved butterflies for their beauty and what they stood for. I’ve always wanted to shed my cocoon and become someone else, someone beautiful, graceful.
One of my first memories as a kid was knocking on the back door of my house and when my mom answered, I’d pretend to somehow be an orphan, looking for some kind person to take me in. And I would try to be that different child, with new habits, in the hopes that my parents would somehow think better of me, love me more as this poor homeless kid than they did as their own.
The butterfly was trying to emerge but it never got too far. Somehow, I would slip into my original self and be a bother to my parents.
Sleep. Â Naps. Â Fatigue, Exhaustion. Â I still have them all. Â I wrote on my bio in 1987 after my pituitary surgery âI 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.â
That seems to be changing back, at least on the weekends. Â A recent weekend, both days, I took 7-hour naps each day and I still woke up tired. Thatâs awfully close to taking a whole day off to sleep again.
In 2006, I flew to Chicago, IL for a Cushingâs weekend in Rockford. Â Someone else drove us to Lake Geneva, Wisconsin for the day. Â Too much travel, too Cushie, whatever, I was too tired to stay awake. Â I actually had put my head down on the dining room table and fallen asleep but our hostess suggested the sofa instead. Â Amazing that I traveled that whole distance – and missed the main event đ
This sleeping thing really impacts my life.  Between piano lessons, I take a nap.  I sleep as late as possible in the mornings and afternoons are pretty much taken up by naps.  I nod off at night during TV. One time I came home between church services and missed the third service because I fell asleep.
I only TiVo old tv shows that I can watch and fall asleep to since I already know the ending.
A few years ago I was doing physical therapy twice a week for 2 hours at a time for a knee injury (read more about that in Bees Knees). Â I come home from that exhausted – and in more pain than when I went. Â I knew it was working and my knee got better for a while, but it’s such a time and energy sapper. Â Neither of which I can really spare.
Maybe now that Iâm nearly 19Â years out from my kidney cancer (May 9, 2006) I’ve been back on Growth Hormone again. Â My surgeon says he âthoughtâ itâs ok. Â I was sort of afraid to ask my endo about it, though but he gave me the go-ahead. Â I want to feel better and get the benefits of the GH again but I don’t want any type of cancer again and I certainly canât afford to lose another kidney.
I always laugh when I see that commercial online for something called Serovital. Â I saw it in Costco the other day and it mentions pituitary right on the package. Â I wish I could take the people buying this, sit them down and tell them not to mess with their pituitary glands. Â But I won’t. Â I’ll take a nap instead because Iâm feeling so old and weary today, and yesterday.
So, these are only seven of the many, many symptoms of Cushing’s. Â I had those above – and I often felt like I looked like one of those little bearded dwarves.
Cushing’s affects every part of the body. Â It’s not like when I had kidney cancer and only the kidney was affected.
Here are some of the many areas affected.
Progressive obesity and skin changes
Weight gain and fatty tissue deposits, particularly around the midsection and upper back, in the face (moon face) and between the shoulders (buffalo hump). Some symptoms such as sudden weight gain, are caused by excess cortisol. The excess cortisol in the body does not increase protein and carbohydrate metabolism. It slows or nearly disables metabolism function, which can cause weight gain (fat accumulation) in the buttocks, abdomen, cheeks, neck, or upper back.
Loss of muscle mass. Some areas of the body, such as the arms and legs, will remain thin.
Pink or purple stretch marks (striae) on the skin of the abdomen, thighs, breasts and arms
Thinning, fragile skin that bruises easily
Slow healing of cuts, insect bites and infections
Acne
Women with Cushing’s syndrome may experience:
Thicker or more visible body and facial hair (hirsutism)
Irregular or absent menstrual periods
Men with Cushing’s syndrome may experience:
Decreased libido
Decreased fertility
Erectile dysfunction
Other signs and symptoms include:
Fatigue
Muscle weakness
Depression, anxiety and irritability
Loss of emotional control
Cognitive difficulties
New or worsened high blood pressure
Glucose intolerance that may lead to diabetes
Headache
Bone loss, leading to fractures over time
Hyperlipidemia (elevated lipids – cholesterol – in the blood stream)
Recurrent opportunistic or bacterial infections
Think you have Cushing’s? Â Get to a doctor and don’t give up!
I’m on my second round of GH (I had to stop the first time due to cancer). I’ve been on Omnitrope since 2006 and the threads inside my pen must have worn down – I’m having a lot of trouble injecting it now.
I insert the needle and have to balance on the edge of the countertop in the bathroom and sort of lean in. Has anyone else had to replace the pen? I told my insurance company who sends the actual drug and they said “not us”. I don’t know if my endo has to prescribe another “starter kit” or what.
I did find a website that will sell me a new one for $200 but I’d rather not buy one that way. I found nothing on the Novartis website about this, eitherÂ
Patients with suspected adrenocortical carcinoma (ACC) may also undergo additional tests to identify excess sex steroids and steroid precursors, mineralocorticoids and glucocorticoids.
Table 2 provides a summary of the tests recommended by the European Society of Endocrinology in collaboration with the European Network for the Study of Adrenal Tumors in patients with suspected ACC.10
Table 2. Diagnostic work-up in patients with suspected or proven adrenocortical carcinoma. Reproduced from Fassnacht et al., 2018,10Â with permission under a Creative Commons Attribution 4.0 International License.
Did you know some people live without adrenal glands at all?
This can happen due to:
Surgery â for tumors like pheochromocytoma or Cushingâs
Metastatic cancer â when cancer spreads to both adrenal glands
Bleeding into the glands, infections like TB
Or genetic conditions (like CAH) where glands are non-functional
In all these cases, the result is the same:
No cortisol. No aldosterone. No hormone backup.
This is called absolute adrenal insufficiency.
When you have no adrenal glands, your body relies 100% on replacement therapy. There’s zero margin for error â even a delayed dose or skipped salt can lead to crisis.
Thatâs why we made todayâs image â with everything you NEED to know if you (or someone you love) is living without adrenal glands.
How in the world did we get here in a Cushing’s Challenge?  I’m sliding these in because earlier I linked (possibly!) my growth hormone use as a cause of my cancer – and I took the GH due to Cushing’s issues.  Clear?  LOL
I had found out that I had my kidney cancer on Friday, April 28, 2006 and my surgery on May 9, 2006. Â I was supposed to go on a Cushie Cruise to Bermuda on May 14, 2006. Â My surgeon said that there was no way I could go on that cruise and I could not postpone my surgery until after that cruise.
I got out of the hospital on the day that the other Cushies left for the cruise and realized that I wouldn’t have been much (ANY!) fun and I wouldn’t have had any.
An especially amusing thread from that cruise is The Adventures of Penelopee Cruise (on the Cushing’s Help message boards).  Someone had brought a UFC jug and decorated her and had her pose around the ship.
The beginning text reads:
Penelopee had a lovely time on Explorer of the Seas which was a five day cruise to Bermuda. She needed something to cheer her up since her brother, Tom, went off the deep end, but that’s another story!
Penelopee wanted to take in all of the sights and sounds of this lovely vessel. Every day she needed to do at least one special thing. Being a Cushie, she didn’t have enough spoons to do too much every day.
On the first day, she went sunning on the Libido deck……she didn’t last too long, only about 10 minutes. Goodness, look at her color! Do you think maybe her ACTH is too high?
Although I missed this trip, I was feeling well enough to go to Sedona, Arizona in August 2006. Â I convinced everyone that I was well enough to go off-road in a pink jeep, Â DH wanted to report me to my surgeon but I survived without too much pain and posed for the header image.
In 2009, I figured I had âextra yearsâ since I survived cancer and I wanted to do something kinda scary, yet fun. So, somehow, I decided on ziplining. Tom wouldnât go with me but Michael would so I set this up almost as soon as we booked a Caribbean cruise to replace the Cushie Cruise to Bermuda.
Each person had a harness around their legs with attached pulleys and carabiners. Women had them on their chests as well. In addition, we had leather construction gloves and hard hats.
We climbed to the top of the first platform and were given brief instructions and off we went. Because of the heavy gloves, I couldnât get any pictures. I had thought that they would take some of us on the hardest line to sell to us later but they didn’t. They also didnât have cave pictures or T-Shirts. What a missed opportunity!
This was so cool, so much fun. I thought I might be afraid at first but I wasnât. I just followed instructions and went.
Sometimes they told us to brake. We did that with the right hand, which was always on the upper cable.
After the second line, I must have braked too soon because I stopped before I got to the platform. Michael was headed toward me. The guide on the end of the platform wanted me to do some hand over hand maneuver but I couldnât figure out what he was saying so he came and got me by wrapping his legs around me and pulling me to the platform.
After that, no more problems with braking!
The next platform was very high â over 70 feet in the air â and the climb up was difficult. It was very hot and the rocks were very uneven. I donât know that I would have gotten to the next platform if Michael hadnât cheered me on all the way.
We zipped down the next six lines up to 250-feet between platforms and 85-feet high in the trees, at canopy level. It seemed like it was all over too soon.
But, I did it! No fear, just fun.
Enough of adventures – fun ones like these, and scary ones like transsphenoidal surgery and radical nephrectomy!
I first saw a similar image to this one with the saying Life. Be in it at a recreation center when my son was little. Â At the time, it was “Duh, of course, I’m in it”.
The original image was a couple of males, a couple of females, and a dog walking/running. Â No folks in wheelchairs, no older folks, and certainly no zebras.
It would be nice to have everyone out there walking or running but that’s not real life, at least in the Cushie world. Â It’s been a long time since I’ve really been In My Life – maybe it’s time to get back.
A dear friend who had not one, but two forms of cancer was traveling throughout Europe for the first time after her husband’s death wrote:
Some final words before I turn in for the night. If there is a spark of desire within you to do something which is not contrary to God’s Holy Law, find a way to make it happen. All things are possible and blessings abound for those who love Him. Life is such an adventure. Don’t be a spectator – live every single moment for Him and with Him.
Somedays, it’s hard even getting up in the morning but I’m trying. Pre-COVID I took Water Aerobics for People with Arthritis and I actually went to class three times a week.
After COVID, I took the stuff I learned there and did it 3 times a week as part of “water walking” by myself or with my DH.  I got a “part-time” job several years ago and I’m teaching piano online. We had plans for a cruise to Norway which COVID made us reschedule for Alaska, which wass to be rescheduled…again.
I’ve recently started playing the balalaika with an orchestra even though I never even touched one before.
This is the one and only life I’ll ever have and I want to make the most of it!
In March of 1987, after the endo finally confirmed that I had Cushingâs, I was sent to a local hospital where they repeated all those same tests for another week and decided that it was not my adrenal gland (Cushingâs Syndrome) creating the problem. The doctors and nurses had no idea what to do with me, so they put me on the brain cancer ward.
When I left this hospital after a week, we didnât know any more than we had before.
As luck would have it, NIH (National Institutes of Health, Bethesda, Maryland) was doing a clinical trial of Cushingâs. I live in the same area as NIH so it was not too inconvenient but very scary at first to think of being tested there. At that time I only had a choice of NIH, Mayo Clinic and a place in Quebec to do this then-rare pituitary surgery called a Transsphenoidal Resection.
My husband asked my endo if it were his wife, if he would recommend this surgery. Â The endo responded that he was divorcing his wife â he didnât care what happened to her. Â Oh, my!
I chose NIH â closest and free. After I was interviewed by the doctors there, I got a letter that I had been accepted into the clinical trial.
The night before I was admitted, I signed my will. Â I was sure I was going to die there. Â If not during testing, as a result of surgery.
The first time I was there was for 6 weeks as an inpatient. More of the same tests.
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, couldnât walk, having strokes, had diabetes. One was blind, one had a heart attack while I was there. Several were from Greece.
My first roommate was a nurse. Â She spent the entire first night screaming in pain. Â I was very glad when they moved me to a new room!
Towards the end of my testing period, I was looking forward to the surgery just to get this whole mess over with â either a cure or dying. While I was at NIH, I was gaining about a pound a day!
During the time I was home the weekend  before surgery, a college classmate of mine (I didnât know her) DID die at NIH of a Cushingâs-related problem. Iâm so glad I didnât find out until reading the alumnae magazine a couple months later!  She was the same class, same major, same home-town, same diseaseâŚ
We have a Scottish doctor named James Lind to thank for the clinical trial.  He  conducted the first ever clinical trial in 1747 and developed the theory that citrus fruits cured scurvy.  Lind  compared the effects of various different acidic substances, ranging from vinegar to cider, on groups of afflicted sailors, and found that the group who were given oranges and lemons had largely recovered from scurvy after 6 days.
Iâd like to think that I advanced the knowledge of Cushingâs at least a little bit by being a guinea pig in 1987-1989.
Several components of the National Institutes of Health (NIH) conduct and support research on Cushingâs syndrome and other disorders of the endocrine system, including the National Institute of Diabetes and Digestive and Kidney Diseases, the National Institute of Child Health and Human Development (NICHD), the National Institute of Neurological Disorders and Stroke, the National Cancer Institute, and the National Center for Research Resources.
NIH-supported scientists are conducting intensive research into the normal and abnormal function of the major endocrine glands and the many hormones of the endocrine system. Researchers continue to study the effects of excess cortisol, including its effect on brain structure and function. To refine the diagnostic process, studies are under way to assess the accuracy of existing screening tests and the effectiveness of new imaging techniques to evaluate patients with ectopic ACTH syndrome. Researchers are also investigating jugular vein sampling as a less invasive alternative to petrosal sinus sampling. Research into treatment options includes study of a new drug to treat the symptoms of Cushingâs syndrome caused by ectopic ACTH secretion.
Studies are under way to understand the causes of benign endocrine tumor formation, such as those that cause most cases of Cushingâs syndrome. In a few pituitary adenomas, specific gene defects have been identified and may provide important clues to understanding tumor formation. Endocrine factors may also play a role. Increasing evidence suggests that tumor formation is a multistep process. Understanding the basis of Cushingâs syndrome will yield new approaches to therapy.
The NIH supports research related to Cushingâs syndrome at medical centers throughout the United States. Scientists are also treating patients with Cushingâs syndrome at the NIH Clinical Center in Bethesda, MD. Physicians who are interested in referring an adult patient may contact Lynnette Nieman, M.D., at NICHD, 10 Center Drive, Room 1-3140, Bethesda, MD 20892-1109, or by phone at 301-496-8935. Physicians interested in referring a child or adolescent may contact Constantine Stratakis, M.D., D.Sc., at NICHD, 10 Center Drive, Room 1-3330, Bethesda, MD 20892-1103, or by phone at 301-402-1998.
