Brain Surgery
Cushing’s Disease
This has been quite an experience. The layers of luck I have had getting here have been mind boggling. Cushing’s disease is a strange one, with a wide variety of symptoms that can all be caused by other things. When things like high blood pressure, fatigue, bruising, random infections, beer bellies etc. are considered individually they are all easily attributed to and treated as individual problems. Only when considered as a whole would Cushing’s even be on the radar to consider.
Cushing’s is basically a condition of abnormally high cortisol hormone in the body. I’m no expert, but here’s a breakdown of my layman’s understanding. There are many subclassifications of Cushing’s, syndrome or disease, ACTH dependent, ectopic, all of which I’m likely to misinterpret so I’ll leave all that to the doctors or you can peruse the Mayo Clinic details. The condition is rare but the most common cause is an active tumor typically affecting the pituitary gland causing it to generate excess ACTH hormone, which then signals the adrenal glands to overproduce cortisol. Cortisol is a stress related hormone and signals the body to enter “fight or flight” mode when we are under threat. Long term elevated cortisol in the body causes it to ignore normal things like healing, energy management, and general maintenance and balance tasks while the body physically stays prepared to fend off a threat that isn’t really happening. This condition is very dangerous if left untreated as the body simply falls apart. As you might imagine, this can contribute to a whole lot of odd symptoms and is the reason that Cushing’s is so difficult to diagnose. For me, the most dangerous of the Cushing’s symptoms is elevated blood pressure. I already struggle with that and have been monitoring and medicating for years due to a genetic disposition to heart problems that took out my grandfather in his early 50’s and made a strong attempt on my father’s life at exactly the same age.
For years I simply thought I was getting old and falling apart. The symptoms were usually individual problems that came after my work or pleasure travels or simply from doing chores and projects at home. Random infections, bruises, aches and pains, minor injuries, all were seemingly explainable with frustratingly minor events. My body shape was changing as well, but potentially within the bounds of a normal aging male with minimal fitness routines. I had a little more belly to go with my thin arms and legs that seemed like an unfortunate reality only mitigatable by an actual exercise routine. A little extra puffiness around my neck line that Heather had been noticing for years seemed like an inexplicable oddity even though she knew it wasn’t right. Casual mentions of that puffiness at the doctor’s office didn’t lead to anything without the context of everything else. I suspect I avoided the typical weight gain with belly stretchy marks and extra “moon face” that characterize Cushing’s through my ongoing OCD level tracking of my diet and control of my caloric intake.
Then came a virus toward the end of 2024. A routine cold or flu but this time with a strong element of fatigue that I had never experienced before. The head and chest symptoms were minor and went away while the fatigue just stayed. I was tired and winded after the simplest of tasks. Oh well I thought, I guess I’m getting old. Then I added some testosterone therapy in an effort to regain some libido, also assumed to be a normal part of the aging process. The hope was not only with a little interest back to my libido, but also in regaining some energy and stamina to build on and get my body back on track. The libido part worked as advertised, but the stamina never did. As other side effects started to appear along with the general odd things I’d been dealing with for years I no longer fit into the regular aging curve. Something was amiss.
Extraordinary Luck
Unrelated things all came together:
- I had to reschedule my annual cardiologist appointment, landing many months later
- My primary care physician had retired, so I scheduled with a new provider
- My blood pressure readings remained alarmingly high, prompting some discussion and testing to evaluate my medication before my rescheduled cardiologist appointment
The first stroke of luck: A completely unrelated blood test ordered by my cardiologist identified an issue I’ve never had before. My potassium measured critically low, and I had to get that corrected immediately as I was on the edge of requiring hospitalization. I didn’t feel any different, and would have otherwise had no idea something was critically wrong. With some medication, the potassium levels returned but now my blood chemistry was on watch. This was only a couple weeks before my first visit with my new primary care physician.
Second stroke of luck: My new primary care physician is a younger doctor, reasonably fresh out of residency. During my initial visit, I outlined all the strange symptoms I had been dealing with over the last year and more. To the young doctor I immediately became an interesting challenge. We all agreed something was going on, but what?! After a bunch of blood and urine testing, my extremely elevated cortisol levels and array of symptoms pointed to Cushing’s syndrome and I entered the care of Endocrinology to proceed.
Third stroke of luck: My endocrinologist is not only an expert in Cushing’s, but is also teamed up with one of the best neurosurgeons in the country. Now we dug deep into more testing, wide varieties of blood screening and imaging to identify the culprit of the Cushing’s. A CT and PET scan showed a small lesion on my pituitary gland and very high metabolic activities in my adrenals. This aligned with one of the more common causes of Cushing’s, changing from syndrome to disease when accompanied by a tumor. However, the tumor was too small to be an obvious cause of all this trouble. Imaging showed some other potentials, high activity in my left adrenal gland, some other spots here and there as read by the radiologist leading to some disturbing Google searches but not a lot of discussion of concern from the medical teams.
Nothing was lining up perfectly. This was frustrating for everyone as it meant no clear treatment plan could be setup, and more and more testing was required for me. I then had to go through the first surgical procedure, an IPSS test specifically designed to check for Cushing’s. Basically an angioplasty with catheters monitored by live Xray from my groin all the way up to my brain but without any actual actions other than controlled blood sample collection. After hours in the hospital to make sure my femoral arteries were all sealed up properly and some rather rough days of healing I was back to working and living, but dealing with the same escalating symptoms of a body overrun by cortisol due to Cushing’s. The test results came back and pointed to the pituitary adenoma identified in the CT scan, but not quite with the level of confidence we were hoping for.
Forth stroke of luck: The endocrinologist and neurosurgeon made the decision to get that adenoma out of there and I was scheduled for surgery. This decision had some risk, what if that was not the source of the Cushing’s? If that was the case, I was about to take on a rather serious surgery that would not affect my condition at all. Which would then lead to more testing and more surgeries. We moved forward and the surgery came, and the combined expertise of the neurosurgeon and ear nose and throat teams led to a smooth execution and removal of the entire adenoma living in my skull. When the analysis of the growth came back, Crooke’s cells were identified which are an additional rarity in tumors that cause them to be especially aggressive. This provided a final explanation of why such a small tumor was causing such an aggressive reaction with my pituitary gland and flooding my body with cortisol.
So it seems that I was a case of a rare disease caused by a rare tumor that happened to contain a rare type of cells.
What Now?
Now I’m in recovery. The physical trauma of the surgery is proving normal, as 2 weeks passed my nose was slowly returning to normal. The hormone driven recovery caused by the changes to my pituitary gland is trickier. I don’t know what is in store for me over the next year. I’ve been warned of the difficulty as my body relearns how to balance itself, but remain hopeful that I will move past Cushing’s Disease and live as a recovered patient in remission.
Now I have to figure out what actual getting old stuff looks like. Hopefully as my body returns to whatever my new normal is, I will have the stamina to engage in actual healthy lifestyle activities and live out the remainder of my life in the best condition possible.
Untreated, Cushing’s is a death sentence. I’ve been given a gift with all this luck and now I have to figure out how to use it. I don’t know how much life has been extended to me or what other things are waiting for me in the last parts of my life, but perhaps this is a wakeup call to refocus my priorities and use the remainder of my life in the best way possible. This is pretty scary, the human condition combined with the location and times I find myself in creates some challenges that have to be balanced somehow. There are quite a few things that I already know but am now facing how to actually implement.
Work and career are not the defining points of life.
But at the same time, we live in a time and society that requires us to play this game of work to trade our time for money. This money is required at minimum to cover basic needs of food and shelter and up to a point of diminishing returns comfort and entertainment. Heather and I have already been struggling with this balance, her role being the push into life experience over work and my role being the anchor back to practical reality to make sure we can afford the experiences. I can’t help but think this Cushing’s experience is yet another call to evaluate this balance in my own life. I need to make sure I’m focusing on what really matters in my own life and in the lives of those that I love.
Health requires work.
For almost 2 years now, an avalanche of small things have stopped me from pursuing real healthy activities that would help maintain my body during the last parts of my life. While I’ve done well with diet through data tracking that aligns with my nerdy brain, which has kept my weight in check even through the endless hunger symptom of Cushing’s, I am still really bad at committing to physical exercise. That needs to change in order to fight the primary thing that will continue to threaten my life, my genetic tendency for high blood pressure.
What to do about satisfaction in life?
This is something we all have to deal with, and accelerates as we approach the latter portion of our lives. As I turn 50 in 2025, the reality is that I’m past the halfway mark now. This event only emphasizes that I have little time left and brings the thoughts of satisfaction more and more to the surface. The classic meaning of life question, what’s the point of all this?
I’ve always been a believer that there really isn’t a tangible point and the experiences and the lessons that we learn from them are the real purpose of life. Everything is temporary here in our little trip in the time bound physical world we find ourselves in. That truth and the teachings of every religion ever point to the fact that things like money, power, physical things are all distractions and not at all what we’re here for. There is no real value in “legacy” because that implies something physical that remains in this world and is therefore impermanent. Outside of our own experiences and lessons, we have an input to the experiences of the life around us as well. If you consider the life around us as an equally miraculous manifestation of divinity as I do, then we have an obligation to help their experience and learning as well.
My own experiences are greatly influenced and expanded by my life with Heather. On my own and left to my introvert tendencies, I would never do many of the things we’ve done and continue to strive for. She has pushed me to see the world, and my travels around the world are greatly valuable to my life and learning experience. Humanity everywhere is worth seeing, it is so easy to live in our localized world and let that color our judgement of the world and the life it contains. As we continue in this life, the challenge for myself and my life with Heather will be to balance that with societal obligations like finances. Money may be only a fiction of our society, but it’s very real for our ability to move about in comfort, freedom, and with security. This is and will always be a challenge for Heather and I to agree on, and sometimes I’m not sure how it will work out. The thought “I’m not sure how this will work out” should be a real consideration for all relationships. All I know is that I’ll do my best to keep that partnership, as I do believe that Heather’s influence pulls me out of my comfort and into life in ways that I would never do on my own.
That leaves the larger purpose of being a force of positivity to the life around me. For my trip in this physical world, I tend to enjoy the interactions with the physical rules we’re bound to and how we can manipulate them through science and physics etc. That’s why I’m drawn to engineering and creating things. Music fits into this, and I’ve always been drawn to the creation and reproduction of music, which is just a mathematical relationship of physical vibrations through different mediums. The how and why behind those vibrations and the energy required in the storage and transmission of them drives my engineering curiosity into electronics, acoustics, and mechanical disciplines. But how does this really contribute tangibly beyond my own little life experience?
For whatever reason I am not drawn to the intangible interactions between life as in the emotional components of life among fellow travelers in this world. That’s not only frustrating for a person like Heather being an empath type that has a much stronger awareness and use for these interactions, but makes my ability to help others with their journey more difficult. What can I do to contribute to the divine experiment?
What to do?
I believe our true contribution to this divine experiment lie at the individual level, the interactions between ourselves and those that we touch on a daily basis. These do not have to be large, repeated or continued interactions. They can be as simple as a single favor or action that brings something positive to another life in that moment. That moment could be fleeting, or become a life long memory. I also believe the opportunities to contribute are all around us, and in order to best be prepared for them all it takes is for us to be present in each and every moment.
That leaves me without any tangible immediate actions out of this whole experience. Instead, the same action comes up again and again: be present! That is the first and foremost action for me. There may be a whole lot of situational specifics to deal with as they come, but those can only be actioned at the time they occur. I truly believe that if I can be really present, the correct actions become clear. The distractions are always elsewhere and usually in the future or past as well. This is all fiction of our brain and ego, when we stop listening to that fiction we find the right way to go.
I’m confident that no matter what I’m doing, be it work, travel, hanging with those that I love or simply interacting with a neighbor or random stranger in the world, I’ll have the opportunity to use that moment as a positive interaction and growth, no matter how small.