Sunday, October 25, 2020

Letting the Cat Out of the Bag



"Procrastination won't change a thing, 

Just you wait and see...!" 

  - Me 

Ok, I admit. I have been putting off writing this blog post for far too long now!

Don't ask me why. I just kept holding out as if some "thing" would maybe happen, some change or event that would take away the necessity for it. 

Or maybe it was a simple form of denial, thinking that if I put down into words what I hold in my heart that it transforms the idea into a physical form with much more real-ness, which is scary! 

Or maybe it's just plain laziness on my part. After all, I've been prone to that all my life and perhaps even more so since receiving this news, which just sort-of sucked the wind from my sails. 

The thing is that I've already presented this news to the worldwide web through my social media accounts. Which, by-the-way, if you were not aware of or familiar with, you can find and follow along from there. However, if you happen to already follow my Facebook page The Cushing's Trail or the new Support Group Cushie's Corner, which is also on Facebook, there's a good chance that you have already heard the news anyway. The point being, that it simply doesn't make one bit of sense to hold out. 

Getting on with it -

So really, what this post is about and what I've come here to reveal is that after four amazing years of enjoying what could be referred to as a "normal life", whatever that is. For me it is one that is absent the on-going and mounting symptoms, frustrations and disabilities that are a part of Cushing's Disease, I have discovered a growing number of symptoms starting to recur. Such as:

  • Sudden Rapid Weight Gain
  • Easy skin bruising / bleeding
  • Slow to heal
  • Excessive hair loss
  • Brittle bones and teeth
  • Exaggerated mood swings
  • Insomnia
  • Very high blood pressure
  • Heart palpatations
  • Impaired ognitive function 
  • Muscle waisting & fatigue 

So with much apprehension and reluctance, I contacted my Endocrynologists and Neurosurgeon from my first round of Cushings and gave them all the details as to what I was experiencing and they suggested that I could very well be having a recurrence. 

As I'm sure you might could imagine, I was suddenly filled with a truck-ton of heavy emotions upon hearing this from them! Up until this point, I had not ever even entertained the idea that a recurrence was even a possibility. 

In my disbelief, I ran some Google searches on the odds and likelyhood of recurrence with Cushing's Disease and found, to my dismay, that it is much more common than I would have ever thought. And, even more disturbing was how that percentage grows exponentially the further out you get from the initial surgery paticularly once you have reached the four year mark! If you've been following along with my blog, you will know that I just published a post celebrating my 4th year of freedom from this dreadful beast of a disease! Oh, the irony!! 

So Now What? -

"Life is what happens when 

your busy making plans!"

- John Lennon 

I have to admit, it would seem that no matter how old I get, how much experience I obtain in this crazy world, I am stubborn to learn that life is not so interested in the plans we make rather, it has an agenda all on it's own and for it's own purposes. 

My plans were to continue taveling full-time around the Country exploring and experiencing all of the amazing people & places that exist. This was a dream from long ago that I finaly decided to pursue following the first surgery. Funny how these life events change our perspective on things and transfer energy into paths that we would, more than likely only continue to just dream about. I have been recently building a website and blogging about my travels under the Social Media Title "RVRoadramblers" which includes a Facebook, Pinterest, Instagram, Twitter, and YouTube accounts.

However, with this latest discovery, I've had to make a change in plans where this time of year would normally make like a snowbird and head South for warmer weather. This year I had planned on finally making my way down to explore the beautiful state of Florida, something I have had on my bucket list for a long time.

Instead however, I have made my way back to Colorado so I can be near to my Doctors, Friends and Family until we figure out what can be done.

I have very little else to go on at this point waiting until I get my ducks in a row with an Insurance plan that will work in Colorado and with a pre-existing condition, a task that will not be easily resolved. 

My Endocrynologists has been very attentive and helpful by agreeing to work with me via email and telephone until I things in order, which has been a big help! She has written prescriptions for Rouvestatin to tame down my blood pressure issue and also Ketoconazole, which is very effective at curbing the symptoms that occur naturally from Cushing's Disease. At the moment, she has me taking 800mg, One pill every 8hrs with a double dose at 10pm. And I have begun to notice a slight difference since starting those medications. 

The next big procedures to come will be an MRI and a Petrosal Sinus Sampling (PSS) to get some more specific information on the tumor itself which, along with at least a half dozen more Blood, Urine and Saliva tests, should begin to unlock the doors of options that will be available for eliminating this Beast once and for all! 

If you've experienced the effects of Cushing's Disease in your life either personally or through a friend or family member, I would love to hear from you or them. Please be sure to share with me in the comments section down below. And also to let anyone you know that might be experiencing the effects of Cushing's about this Blog or the other Social Media Accounts I mentioned above. You never know when you might just be saving a life by doing so. 

"Awareness and Action 

are the 

Keys to Change!"

- Me

Wednesday, September 16, 2020

Happy Anniversary! : The BIG Four!

Four Year Anniversary Cake with Candle


   You hear it all the time, “Wow! Can you believe it’s been (fill in the blank) yrs. since (fill in the blank) happened!? Seems like it was just yesterday!”

I could have easily started this post, and kinda did if you think about it!, with that worn-out old statement! Because this month just happens to mark a very significant anniversary for me. It was just four years ago today that I was being scheduled to have my surgical procedure done on my Pituitary Gland, which the doctors like to refer to as Endoscopic Transsphenoidal Surgery. (ETS)

If you’re not familiar with what that is exactly, don’t worry because I certainly wasn’t when I first heard of it. But if we break it down a bit into smaller peices, it’s like this: 

Endoscopic:  “An endoscopy is a procedure used in medicine to look inside the body. The endoscopy procedure uses an endoscope to examine the interior of a hollow organ or cavity of the body. Unlike many other medical imaging techniques, endoscopes are inserted directly into the organ. There are many types of endoscopes.” - from Wikipedia


Transsphenoidal:  “Transsphenoidal surgery This is the most common way to remove pituitary tumors. Transsphenoidal means that the surgery is done through the sphenoid sinus, a hollow space in the skull behind the nasal passages and below the brain. The back wall of the sinus covers the pituitary gland.” - from


In other words, they basically drill a small hole up through your nose and insert a sort of microscope that enables the surgeon to carefully remove portions of the Pituitary that contain the tumor which is producing the hormone that tells the Adrenal glands to flood the body with tremendous quantities of Cortisol (not good!) which then triggers a whole slew of nasty complications described or defined as “Cushing’s Syndrom”.

  Though there are several other treatment options depending on the individual’s particular circumstances, ETS is typically the most common and go-to procedure for treating Cushing’s and arguably produces the best results toward possible remission. 

Transsphenoidal Surgery: The Silver Bullet

   For me, the initial outcome was like a magic bullet with Cushing’s name on it! It would be misleading of me to to not admit the fact that recovery from the operation was a bit brutal through the first three to five days. However, I remember there being an excitement or anticipation of how life would change and how different it would be to finally be free from the never-ending onslaught of complications that plague your day to day existence and those thoughts give great power to get you through the initial days of recovery. 

   Looking Back: A Lesson in Reflection

   Shortly following the ETS procedure, I spent a lot of time thinking about, talking about, and of course, comparing my “old life” with the new one that was unfolding before my eyes. And I was constantly amazed at how rapidly and dramatically things were changing! 

   The first year was the transition year with the most dramatic changes and was fairly unsettled. It was a balancing act as all of my physical, mental and emotional capacities worked out what would be their new normal. Probably the biggest and most outwardly noticeable change during that time was the steady but rapid loss of weight, which was definitely a huge boost to my emotional spirit which, in turn, further gave me greater energy levels to do more and be more. 

Just Before Surgery


2yr After Surgery

   Since then, every year has improved upon the last and has continued to influence my life in ways that I could not have imagined. The newly acquired perspective on just how short and precious our lives truly are coupled with the renewed energy and motivation gave way to our decision to let go of most of all our material possessions that we had been accumulating over the years, significantly reduce our over-all cost of living expenses and take off on a completely different lifestyle that would enable us to focus more on experiencing people, places and things on a much deeper, meaningful level for us, which has been an amazing journey that extends way beyond any of my wildest expectations. Not that there hasn’t been any bumps along the way! Life will always have a few curve balls to keep things interesting, but through these experiences over my life and particularly over these last four years, I think that it is fair for me to say that, I have gained the ability to see through them in a more appreciative way and with greater patience than I was able to before and it has given me the opportunity to succeed greater personal achievments with less sacrifice to who I truly am as a person today. 

   So, in celebration and appreciation, here’s to the last four incredible years of steady progress toward a more purpose-filled life with excitement and anticipation of what may come over the next four.

Monday, August 31, 2020

In the News: Isturisa (osilodrostat)


Latest News

    In the wonderful world of health & medicine, it is an unfortunate truth that progress happens in small doses and and at a pace that is barely noticeable as can be witnessed in the scramble to produce a working vaccine for this current Corona Pandemic. 

    However, much like catching that unexpected glance of a shooting star as it races across the night sky, we are sometimes blessed with the opportunity to catch a glimpse at the truth that despite the temptation to fall victim to frustration and hopeless convictions, there is, in fact, a forward movement of progress that is definitely at work.

    During my latest research on the latest Cushing's News, I happened across this article, which ignited in me that same response as to the shooting star I mentioned above. It's been a while since I've seen anything new come about as the result of ongoing research for treatment options available to Cushing's Disease patients. 

FDA stamp of approval

    Evidently, as of March of this year (2020), the FDA (US Food and Drug Administration), the folks who are burdened with the responsibility of determining whether or not a particular food or medicine can be deemed safe for human consumption or not, released a bulletin regarding a new Drug called Isturisa, that they have given the designation of "Orphan Drug", which is evidently a designation given to any substance meant to treat rare disease or conditions such as Cushing's. 

    The FDA claims that Isturisa works to disarm the synthesis of Cortisol in the body thereby reducing the overall destructive effects that abnormally high levels of the hormone have on the rest of the body. Upon evaluation, they are claiming an 86% success rate at restoring Cortisol levels to near normal levels, which is a very impressive statistic, in my opinion! 

Boxes of Isturisa a new Cushing's Disease medication

    Though, due to the fact that these drugs are not a remedy to the remaining root issue, which is the presence of a benign tumor located somewhere behind the scenes running amok, this new kid on the block option, like others of its kind (i.e. Ketoconazole) is mostly considered as an alternative to a surgical procedure but where surgery is no longer an option available or as a temporary bridge to provide some relief of symptoms while the wait for surgery is at an extended length of time, like during a Covid-19 Pandemic! For now, surgery still remains as the go-to procedure for dealing with Cushing's Disease as it strikes directly at the root of the problem. 

    Anyway, regardless of the fact that Cushing's Disease remains on the list of rare diseases lacking a definitive cure, it is quite refreshing to see some evidence of activity toward the relief of it's dramatic and altogether dangerous effects on the body. Though I must admit, that pesky little kernel of conspiracy theorist that looms within me often wonders if these efforts coming from big Pharma aren't just polished-up, freshly presented money pots for our precious few remaining dollars! But, I should leave that for now and let you be your own judge on that. 

    If you're interested in reading the full press release on Isturisa from the FDA, I have provided a link to it for you here: Isturisa (osilodrostat)

    As always, I hope that all is well in your world. If you have any questions or additional information to share, please be sure to leave a comment below and thank you for visiting The Cushing's Trail!