Living and Fighting with Two Diseases – Danielle’s Story
From Cushing’s Disease to Addison’s Disease & surviving 3 brain surgeries, Danielle is a brain tumour survivor who first shared her story in 2015. After almost a decade of living with a brain tumour and a rare disease she has again graciously provided an update – all the while spreading awareness of brain tumours. Here is her story:
On August 6, 2015, after suffering for years with unexplained symptoms, I underwent my first transsphenoidal endoscopic pituitary brain surgery to remove a pituitary adenoma.
Over the last 10 years, MANY things have taken place. I have had three brain surgeries, was blessed to have a healthy beautiful little girl (who recently turned ONE) and due to continued symptoms from my tumour; opted to have both my adrenal glands (bilateral adrenalectomy) removed in May 2021. After more than 10 long years of battling Cushing’s disease, this surgery rid me of my symptoms but left me on life-sustaining medication for the rest of my life. I am now living with a new disease; Addison’s disease (also called adrenal insufficiency) for the rest of my life and I am still continuing to navigate this new norm today.
Flash back to the beginning
After my first surgery in 2015, I often found myself saying, “I just want my life to be normal again.”
However, after nearly a decade and three brain surgeries, I have realized and accepted that my life will NEVER be normal or NEVER be the same. I am learning to accept what is my new norm, and I am starting to make peace with the reality of my new life.
I have watched myself change significantly into a person I can honestly say I am proud of. I have come out of this a stronger person. I have been pushed to my absolute limits and because of this I have found my inner strength.
I would be lying if I said living with both an aggressive recurrent brain tumour and Cushing’s disease isn’t difficult. Cushing’s is an unpleasant disease. It wreaks havoc on you physically, mentally and emotionally. Many people think you have surgery. You rest. You recover. You are healed. IF ONLY IT WERE THIS SIMPLE.
A bit about Cushing’s Disease
From an outside perspective, the majority of people think post-surgery, you look fine = you are better. Now, don’t get me wrong, after all three of my surgeries eventually I was left with some reprieve. My body and levels would semi-calm down and between each surgery I did have some relief. Some people who have better, let’s call it “luck”, do end up having successful surgeries and live the rest of their lives with no necessary treatment at all.
Unfortunately, this was not the case with me.
Unlike a cut where you can physically see the healing process, one cannot see our brains healing or the affects this invisible disease has on those suffering. All of the hormone changes and other typically unnoticeable symptoms associated with Cushing’s disease make it very hard for an observer to truly understand how complex it really is.
With Cushing’s disease, the adenoma causes the pituitary gland to release too much ACTH. ACTH stimulates production and release of cortisol, a stress hormone. Too much ACTH causes the adrenal glands to make too much cortisol, causing all of the terrible symptoms.
After my first surgery and my most recent one, I was put on a synthetic hydrocortisone replacement. This is because once the tumour is removed, the pituitary gland is dormant and does not release ACTH, therefore, the adrenal glands do not make any cortisol.
The goal is for the medication to be a temporary means until your body regulates the release of ACTH and cortisol normally.
From here, I started my journey of self-weaning. This was a test in itself. There is no “black and white” method to properly wean off your meds, and it’s different for every single patient.
If you wean too fast, you’ll put yourself into adrenal crisis. I’ve found myself in the emergency room many times because of this. If you taper too slowly, you’re artificially causing symptoms of Cushing’s disease and you are not pushing your pituitary gland to wake up on its own.
From Cushing’s Disease to Addison’s Disease
When tapering yourself off your meds, your body experiences withdrawals similar to a drug addict’s. These were some of the worst days of my life. It took me years to manage my medications, and no one can tell you how to do this. You and only you will know how you feel and what your body is telling you.
Having had to deal with this in the past, has somewhat saved me after my most recent surgery that left me with no adrenal glands.
I am now left drug dependent for the rest of my life. It has been a continued learning curve to find the right dosages, and even now after 8 months, I am still navigating this.
Once my adrenal glands were removed, my body now no longer is able to produce certain hormones on its own, so I take medication four times a day and will for the rest of my life. My body no longer is able to regulate salts as a result, so in hot weather, after strenuous exercises or upon dehydration I have to up my medication or face going into adrenal crisis; a medical emergency.
I wear a medical alert bracelet, my family members, friends, and my workplace are educated on what to do in case of an adrenal crisis, and I carry emergency injections and my medication on me at ALL times. My diaper bag, stroller, purse, car; you name it, I have my meds.
Missing even one dose of my medication can be fatal. That being said, all of the risks and side effects associated with this major life-changing surgery were carefully thought out by myself and my whole team of doctors.
The actual surgery itself went great. I had the best specialist and surgeon at Toronto General Hospital and for the rest of my life will continue to have follow-ups with my Endocrinology team and my neurology team.
I will forever be monitored through urine labs, blood work, and MRI’s but would pick this life 1000x over compared to what I was living with before.
The recovery was HARD! Very hard. It took a lot of work and listening to my body. It was the hardest thing leaving my 3-month-old daughter at the time and being ALL alone in the hospital during COVID for my surgery, but I did it and now nearly 8 months post-surgery, I am finally starting to look like my old self and I am finally starting to have more better days.
I am down nearly 80+lbs from a very hard and high-risk pregnancy that nearly was fatal, starting to exercise and enjoying more things that I used to. I am still learning to manage my meds and alter them in times of stress, over-exertion, and in times of need. I have accepted my medication is just another part of my daily routine and life.
For 10 years of my life, like many Cushing’s patients; I have had little to NO control. No control over how I look. How I think and how I feel.
It’s very hard to look in the mirror most days and see my swollen, bloated, fat puffy face, arms, legs and neck staring back at me. To put on clothes and they don’t fit. To have aching legs and joints and go days without sleep all while doing my very best to eat healthy, exercise and work extremely hard on my mental health.
You can do everything in your power to try and control these things, but the disease and hormones are in charge.
The biggest piece of advice I can give people in a similar situation – living with a rare disease and brain tumour – is to listen to your body.
I take advantage of the days I feel well, and I rest when I need a break.
Knowing my own personal limits has become one of the most important parts of my new life. I make realistic plans and sensible, attainable goals. Prioritizing my time and understanding my physical limits with work, meals, exercise, family, and fun is important.
But, I also make sure I set aside time for me, especially when it comes to my mental health. With a new baby at home and being a first-time Mom, this has been very, very important.
It’s okay to say NO when you are too tired, or have had a few bad days. I have accepted this and learned I am no good to anyone else if I am not okay myself.
My therapist (who, I might add, has SAVED my life in many ways) always reminds me of the example of the oxygen masks on an airplane. You put your mask on first before you help others around you. This message has resonated with me in many ways – especially now more than ever being a new Mom.
Just before Christmas of 2019, I had my third pituitary repeat brain surgery. Merry Christmas to me!
My husband often jokes we should have shares in the Toronto hospital parking garages, as we are here so much. Sometimes you have to use humour to make light of these situations, and thank GOD for my husband for this!
Talk of radiation was first spoken of, but after careful consideration a third surgery to “explore” and remove whatever was causing more havoc in my brain was decided. At this point too, I had also tried various other medical treatments in the past without any success – Ketoconazole, Cabergoline, Metformin and Dexamethasone to name a few.
Some people can tolerate these medications and are able to stay on them for years or even forever with great success. Again, I was not so lucky. They left me with terrible adverse side effects and no relief from my symptoms.
A big decision
After the surgery in December 2019, I knew the likelihood of further treatment was high due to the severity of my Cushing’s disease and remnants of tumour cells in other areas of my brain. However, given the fact my disease was manageable at the time, with the blessings and go-ahead from my doctors, my husband and I decided we were going to try and start a family.
This is something I have wanted my entire life. We both did. We both knew the risks associated with trying to conceive while having active Cushing’s disease, but at the time, things were stable.
We tried for a few months with no expectations and also talked about adopting, surrogacy and IVF if needed. We had no expectations because – not to sound negative but… – my health hasn’t exactly led me to believe in many positive things over the last 10 years.
After a routine blood/urine/MRI appointment my doctor called and asked to see me in person.
This is never a good thing.
My husband and I drove to the city and met my endocrinologist. I just knew in my heart this appointment was NOT going to be a positive one. After a lengthy conversation filled with anger, frustration and many many tears from my end, he told both of us it would be in our best interest to stop trying to conceive. My Cushing’s disease was again active to the point where it was not safe for myself or potentially a fetus.
I was devastated. We both were.
I wiped my face, sat up straight and told him “Okay then, if I can’t have a baby, I want to have my adrenals out and I want them out NOW. I am READY.”
I had already put my entire life on hold for years and now the one thing I wanted more than anything was being taken off the table.I knew that after three failed brain surgery attempts and numerous medications failing, I was only left with one choice…
Surgically removing both my adrenal glands.
Risk and reward
We talked about the major risks associated with this surgery as they would be taking out organs that could NEVER be put back. I would have to be on lifelong medication replacements and missing my meds even for just one day could be fatal.
I signed some paperwork and got the name of a specialized surgeon who would meet with us and potentially do the surgery. As we were walking out the door my doctor said I might as well do my blood work at the lab and asked if there was any possible way I could be pregnant.
I told him I would go do this now and “NO,” I had taken a pregnancy test the previous morning that read negative.
I left that office with a mix of emotions, to say the least. Holding my husband’s hand, trying to be strong, we walked out of the hospital. I called my Mom and the tears just fled. Tear that felt like they had been festering for decades.
I was crushed by the news but I was also so ready to fight through another battle.
Fast-forward a few hours
My husband and I went for a walk in the city instead of getting in the car and going home. For anyone that knows my husband, he LOVES retail therapy. I was sitting in the change room waiting for him to try on some clothes when I received a “ping” on my phone. I get all my lab results to an online portal and opened the tabs. ACTH, Cortisol, CBC, T3; the normal routine blood work I have every 3 months; however there was a new one.
When I opened it, it read, Positive: PREGNANT!
The next few hours were a whirlwind – a huge mix of emotions.
We were both in shock as we were locked in a department store with COVID limiting numbers of people in and out and the doors being locked from the inside. All I remember is sitting on the curb of a street in Toronto with tears again flowing down my face.
But I didn’t know if they were happy tears or fearful ones at this point, as we had just been told hours earlier to STOP trying to have a baby as it was not safe.
After the next few days talking to all my doctors, they all reiterated to us many times that this was a blessing and that I would be thoroughly monitored throughout my pregnancy and for us to celebrate this wonderful and amazing news.
Pregnancy with Cushing’s disease
There is limited evidence and studies of pregnancy and Cushing’s disease, because most women are not able to get pregnant. The ones who do are often not able to carry to term. I was referred to an incredible team of doctors at both Toronto General Hospital and Mount Sinai Hospital for their high-risk pregnancy program.
Throughout my pregnancy, I had a team composed of a high-risk OBGYN, a nurse practitioner, my own personal nurse, three high-risk endocrinologists and a hematologist.
I had monthly ultrasounds, monthly glucose challenge tests and had to have weekly blood work done.
I was injecting myself with insulin needles three times a day and administering needles in my stomach every day for a blood clot. I spent the next eight months of my life in and out of doctors appointments, hospitals, labs and living in constant worry that my disease was going to affect my unborn baby.
It was the hardest eight months of my life.
Not only did I gain a significant amount of weight, I developed severe heart issues, kidney issues, gestational diabetes, increase kidney stones, a blood clot in my arm and was even deemed to have surgery six months into my pregnancy. Thankfully, we passed on that one.
Pregnancy is made to look so beautiful in the world of social media we live in. However, I often found myself saying, “You do not have to love your pregnancy to love your baby.”
I will tell you – I sure as hell didn’t love anything about my pregnancy but loved that growing little thing inside me more than life itself. Pregnancy was hard. Very hard. I threw up for eight months, at least three times a day on top of everything else as well.
However, if I had to do it all over again to get where I am now, I would do it a hundred times over!
Peyton Ray Froio
Friday, January 22, 2021, 9:45am.
My life was forever changed. After what seemed like the longest eight months of my life, my beautiful and 100 per cent healthy baby girl blessed us with her presence.
I was induced a month early due to my health declining. Despite having an emergency C section after 24-plus hours of labouring and a few complications, my daughter was born – tiny but mighty, and completely healthy.
Today she just turned one and is growing and thriving – the true definition of a miracle.
Time to heal
After her birth, the initial thought was to allow myself and my body some time to heal and then consider my surgery to remove the adrenal glands. However, three months post-pregnancy, my disease was again rampant. My body was suffering with symptoms and declining at a rapid rate; that is why the bilateral surgery to remove both adrenal glands was 100% necessary. I was a mix of emotions. After 3 brain surgeries my nerves were now accustomed to being put under and hospital routines etc. But leaving my daughter and being alone during a pandemic was what hit me the hardest.
I however was suffering, my health declining rapidly and because of this, I finally found some light at the end of this VERY long tunnel.
Adrenal removal for me was necessary to control the excessive cortisol levels in people with Cushing’s disease like myself who continued to fail post-surgery and to improve after pituitary surgery or through medication. Yes, there were MANY risks associated with this design and post-surgery life is not easy.
Living for today
I try my best not to live my life in worry of what my future holds – to live for the moment by taking it day-by-day and hour-by-hour some days. My husband – who is my ROCK and whose life has been just as affected as mine throughout all my challenges – reminds me all the time, we will cross these bridges when and if I get to them.
They say having a good attitude is half the battle, but I believe it is much, much more!
Over the last ten years, I’ve experienced some of the darkest days of my life. That being said, I also have experienced some of the best days of my life and met some amazing friends along the way.
I now just stop and look at my daughter and for once in my whole life I accept all that I have had to go through. Maybe if my life didn’t throw me all these challenges when they did, I may not have been blessed to be her mom.
I don’t feel sorry for myself and I don’t want anyone to ever feel sorry for me either. Without my struggles, I wouldn’t be where I am today.
I felt so alone throughout my original diagnosis, surgery and recovery. I had no one to talk to who could relate or validate how I was feeling.
As much as my friends, my family, my doctors and my therapists tried to understand, they couldn’t. Like any experience in life, no-one can fully appreciate what someone is going through unless they’ve walked a mile in their shoes.
By sharing my first story with Brain Tumour Foundation of Canada many years ago now, I allowed myself to be vulnerable. I shared my struggles and the reality of this difficult disease. But I am so happy I did. It has allowed me to connect with so many people in similar situations and has allowed me to feel like I am no longer alone.
I hope this most recent update gives people hope that you can get pregnant and have a healthy child as well. Because of this, I will continue to spread awareness of brain tumours, Cushing’s disease, Addison’s disease, and other brain-related illnesses.
My neurosurgeon once told me, “If our story can help just one person, we’ve both done our jobs.”
I can proudly say to her, we’ve BOTH done our jobs and exceeded with flying colours.
I am so thankful for my support system for continuing to listen to me, motivate me and push me.
I am eternally grateful for my husband, my daughter, my parents, my brothers, my family members, my friends, my colleagues, my therapists and my medical team.
I am thankful for all of it. The highs. The lows. The struggles. The setbacks. The comebacks. Everything!
It does take a lot of work but I promise you, you can do it. YOU’VE GOT THIS!
For those of you who followed along with Danielle’s #TurnMayGrey fundraising initiative, Danielle along with Anastasia and Angel Jewelry by Anastasia sold over 800 awareness bracelets and raised a GRAND TOTAL of $40,600 for Brain Tumour Foundation of Canada. The funds will be going towards research, and we couldn’t be more humbled by her amazing contribution to the fight to #EndBrainTumours.
(To see more and follow along with Danielle’s advocacy, check out @turnmaygrey.)