Cushing's Disease: Episode III - Revenge of the Tumor
Cushing's Disease: Episode III – Revenge of the Tumor
War! Cara is crumbling
under the attacks by the ruthless
pituitary tumor, Mama Fratelli.
There are heroes on both sides!...
I had several other titles dreamed up for this post but given that today is May the 4th a.k.a. “Star Wars Day,” for all you Disney/Star Wars fans out there, I thought I would give a nod to that as this is my third installment regarding this delightful journey I have been on. So May the 4th be with us all today as I get to the point…
When we last left off… my endocrinologist made the shocking observation that not all of my lab work was pointing to my tumor causing me to have Cushing’s Disease. A lot of the labs and diagnostic tests were inconclusive or not helpful at all. There was no clear answer. So everything was put on hold.
After completing several more labs and scans over the past few weeks, it turns out that my pituitary tumor is in fact the root cause of me having Cushing’s Disease. Although living with this disease was extended by this additional work, I am grateful for the diligence of my doctor in making sure that it is 100% the source. I mean who wants to have major surgery that they may not have needed??
I am also relieved that no other masses were found in my scans. With this disease the cause can be a pituitary tumor, an adrenal gland tumor (which was previously ruled out) or another ectopic source like a cancerous lung or other organ tumor. I am fortunate that the pituitary tumors are almost never cancerous and that I hopefully won’t have an additional battle to fight. This is not lost on me that I am one of the lucky ones in that respect.
This is not to say that this epic journey is finished though. As my brother-in-law sarcastically pointed out when I got the news, “Mama Fratelli is guilty after all!” Yep. She sure is. And since “Goonies Never Say Die” - move over lady. Your days are numbered.
In less than 2 weeks I will be undergoing the pituitary surgery that I have previously scheduled and canceled twice. While I feel like it’s a bit of a groundhog day situation with the preparations and pre-op appointments, I was not able to see it through previously and it wasn’t as real feeling those first two times. As I said to the pre-op nurse this past week, “Well, I guess we are really doing this.” Third time is the charm as they say. I am extremely scared and apprehensive that it is in fact coming to fruition this time around. There are a lot of unknowns as to how the surgery will go and what the recovery process that is ahead of me will be like. The doctors can only give me the facts, the statistics and the average reactions but these are guesses at best. It will be a unique, individual process for me as all medical journeys are.
Since finding out that this was indeed my next inevitable step, it’s been hard. Most days I have been waking up and the first thing that runs through my head is the countdown to my surgery date. Next the to-do list follows. I have been told I will be down for a good 4 weeks followed by a 6 to 12 month hormone re-balancing process where I will likely feel like I have a really bad flu. That’s right… 6 to 12 MONTHS I will feel like I have the flu. It’s overwhelming, all consuming and thinking about this lingering for that long makes this whole ordeal continue to be one hell of a roller coaster ride. However, the thought of going further down the rabbit hole of extreme fatigue, sleeplessness, weight gain I can’t control, mounting other symptoms and the long term permanent conditions with no end in sight outweighs those fears. After almost two years of this nonsense, I am done. I just want to get this over with and be on the other side. I want to feel and look like myself again. I want my life back.
Advocate!
I have no regrets that I advocated so hard for my health and I feel good that my doctors are confident in the next steps. However, even with that reassurance there have been some really tough moments the past few weeks which has meant I haven’t felt particularly witty or inspired to write about it. As the Wook said to me, “We haven’t seen Gayle in a while…” - and she would be right. Advocating isn’t always easy and it can be draining. So Gayle’s been in hibernation. I hope she returns soon.
On top of what seemed like endless lab tests and scans, I celebrated another trip around the sun last month. What a trip it was. All I could think about was hopefully when I celebrate my next birthday I will be on the other side of all this. Wouldn’t that be a wish come true? It was also Spring Break at the same time that week for my little darlings. (Break? Break for who? Certainly not me.) We returned from a short birthday/Spring Break excursion and then immediately had some major home renovations that started which I was managing in addition to my usual day to day duties. Mostly though, I am just tired all the time and as I said to several friends - I am currently surviving, not thriving.
During this time, I have had to learn to slow down. While I am normally go, go, go all day every day with my type-A personality, driven Aries ways, I am currently not able to do all the things for all the people that I love - but rather the bare minimum at best. I have had to lean on my husband hard even though he’s still trying to work and do all the things he normally does. Sadly, I have had to tell my kids on many occasions that I can’t do fun things with them because I am too tired or need to rest in order to stay healthy. I had to call my good friend Brando of 33 years to tell him that I can’t attend his upcoming wedding to the soulmate he spent decades looking for because it is just days before my surgery. I have had two recent horrendous sinus infections that took weeks to get over and I can’t risk being exposed to germs, getting sick again and jeopardize my surgery getting canceled. I have had to refuse invitations to meet up with friends and have become somewhat of a recluse. I also have had to bow out of future trips because I just don’t know what’s ahead of me and the post-op restrictions are somewhat long term.
I haven’t felt like doing many of the things I normally love to do to fuel my soul and so it makes this waiting game until surgery even longer. Instead, I have had to plan for and document being completely out of commission with all of the responsibilities that I shoulder at home for the next few weeks. I have been wracking my brain to write down all things that only I do, know, take care of, etc so that things can stay somewhat normal for my kids. I know I have excellent support planned during my recovery but my kids are clearly feeling the stress of having Mom be down. It makes me feel a little better knowing that they will be able to keep somewhat of a routine to get them through it all. However, it’s a lot to think about, every day, all day and it makes me more tired.
As always though, I am trying to keep perspective. Even though there are a ton of risks with the surgery, my overall condition is likely curable - a luxury that not all in a health crisis are afforded. One of the things that has helped me through this phase is a new podcast I found called “MeSsy” that is hosted by Christina Applegate and Jamie-Lynn Sigler. Both of them have been diagnosed with Multiple Sclerosis. Both are middle-aged moms of school aged children like me however their health situation is quite different. What they have experienced with their disease is heartbreaking to hear about and sadly for them, it’s degenerative and there is no cure. What a heavy burden that is to carry. I bow down to them for continuing to fight and share their stories publically. I consider myself fortunate that there is a real possible light at the end of the tunnel for my disease and that hopefully 6 to 12 months from now, I could be back to how I was before all this began.
What I love about this podcast is that both of them keep it real. There are moments of sadness and vulnerability. There are moments of support and grace given to one another. But there are also moments when they find the humor in their disease and try to have a good laugh about it. I have tried to do the same on all accounts.
Each week they end the podcast by reading an inspirational quote from a stack of cards. The first week the podcast aired, they read them to one another and the first quote struck a huge chord with me, my journey and my mission for this blog.
"We don't receive wisdom; we must discover it for ourselves
after a journey that no one can take for us or spare us."
- Marcel Proust
After reading the quotes, they then end the podcast by saying to one another… “And so it is.” Yes. Yes. It really is. Thank you for sharing all this wisdom ladies.
This is a journey that I have to walk for myself and no one could have spared me. I am so appreciative to those of you that have walked alongside me. I am trying to be grateful for the wisdom that has been bestowed upon me during this journey thus far but I hope the greater lesson in this all becomes clear. We will see what the coming weeks bring and I hope to be on the other side of this soon.
And so it is.
