The Cunninghams Second Brain Surgery
Donation protected
What are the chances of two people who grew up 3,000 miles apart falling in love, getting married, and within the first 10 years of their relationship, the two people BOTH need brain surgery? Guess what! We are that couple!
Friends and fam are all probably very familiar with our story - in 2009 I went to the University of St Andrews in Scotland for a few years of college, where I met and fell in love with Robbie Cunningham back in February 2010. We got married in Colorado on February 15, 2014 and on October 18, 2014, Robbie had a series of seizures and was diagnosed with an anaplastic astrocytoma, which is a malignant brain tumor. Unfortunately for us at the time, we were still waiting on the US Citizenship and Immigration Services to process the paperwork that would have granted Robbie his permanent residency (“green card”) and the right to buy health insurance. Facing the prospect of going into six-figure debt overnight had we stayed in Colorado, we were lucky enough to be able to get on a plane back to Glasgow, Scotland to stay with his parents. Robbie got the surgery he needed on November 7, 2014. That was the start of a sixteen month journey through radiation and chemotherapy, which resulted in nearly five years of successful management of his brain cancer.
Really unfortunately, in December 2019 we found out that Robbie’s tumor had started growing again. In January 2020, he got a round of Gamma Knife radio-surgery (effectively a super precise but extraordinarily high dose of radiation) - and since then, his three-monthly MRIs have been totally stable. We've been really blessed that he hasn't seen any acute side effects from this round of treatment.
After addressing Robbie's recurrence in January, I've found that the year has been an extraordinarily rough one for my health. Right after Robbie’s Gamma Knife, we went skiing in Vermont and I tore my ACL - which needed a surgical repair which was put on hold during the NY coronavirus lockdown. Unluckily for me, I was one of the .2% (basically one in 1,000) of arthroscopic ACL reconstruction patients who got a staph infection after surgery. On June 12, I had to go back under the knife so my orthopedic surgeon could clean out my knee and try to prevent that infection from reaching my joint (which successfully we avoided). Needless to say, all of that sucked. It held up my recovery process, caused pain, and was a blow to my income. All of the recovery time needed after my ACL tear has had a huge limitation on my income as a yoga teacher/fitness instructor (and independent contractor, not generally an employee). Not to mention, since gyms and yoga studios have been closed in New York from March to August, there are simply less opportunities for me to make money. That has certainly been tough, though hardly a unique struggle.
Well, the summer did not get any kinder! Through July I went through a small litany of tests that led me to have my very first brain MRI on August. By then I knew that it was highly likely that we would find an issue on the MRI with my pituitary gland. Pituitary disorders are extraordinarily common - according to Johns Hopkins about 25% of people may have a pituitary tumor and not even know it! However, mine has turned out to be anything from common.
I’ve been diagnosed with a growth hormone-secreting macroadenoma. Macro- my tumor is bigger than 1cm // Adenoma - pituitary tumor. Most adenomas are non-functional - they don’t produce their own hormones. Almost all pituitary tumors are benign - so it’s extraordinarily unlikely that I have cancer. However. My tumor is way bigger than 1cm, has invaded my cavernous sinuses, is displacing my optic nerve, and is pumping out growth hormone like nobody’s business (well, not any healthy 28 year old!). It’s probably been growing for a decade or more. See that shiny nose-shaped thing near the mouse? That's my tumor, and those little holes are my internal carotid arteries.
The way it’s producing growth hormones means that I’ve got an additional diagnosis - acromegaly. Acromegaly is a chronic, rare disease (approximately 5 in 1,000,000 people might have acromegaly !) and because it’s so uncommon and because the physical signs of it come on so slowly and bewilderingly, it can be really hard to diagnose. If it goes undiagnosed for a long time it can lead to serious illnesses and be life-threatening. Luckily I’ve gotten a diagnosis and it’s led to an extraordinary feeling of relief for me. Every strange thing my body has done in the last decade can be explained by this disease! It explains my feet going up a size between ages 22-23, my ring size going up two sizes since I got my engagement ring in 2013, my worsening depression, my adult acne, even how much I sweat. It definitely explains the three “ear infections” I was diagnosed with between November 2018-July 2019 and onset of TMJ around a similar time — excess growth hormone was causing my jaw to literally grow, my bottom teeth have been spreading, and the pressure in my sinuses and have all been caused by this tumor (not just allergies like I was told!). I regularly deal with headaches and the feeling of “ear popping” daily, fatigue, and some joint discomfort. Since getting the MRI I’ve gotten a visual field test and guess what? That pressure on my optic nerve from the tumor has been subtlety effecting my peripheral vision! I wasn't aware of any vision changes at all, but I had noticed that I have had some extra clumsy moments over the last year or two.
So what does this mean for our future? On August 3 I got the MRI and found out it was this big old tumor. Nine days later I met my neurosurgeon, and on August 17 I met with the ENT that my neurosurgeon wants to operate with for our pre-op visit. That’s right, two brain surgeries in six years between Robbie and me. Because of how big the tumor is and the way it’s totally circling my left internal carotid artery, there’s no way the surgeon will get the whole thing. That means that after surgery, I’ll have to prepare for radiation to try to “zap” the edges of the tumor so that it doesn’t grow back. With all of the hormonal complications I’ve been low-key dealing with for the last decade, I’ll also need to see an endocrinologist for the foreseeable future. Hopefully the surgery and radiation will lower my growth hormone levels considerably, but I’ll need the endocrinologist to medically lower any extra growth hormone and support the extraordinarily low levels of other hormones in my system that I need to stay healthy. Maybe with some time to decompress, I get my peripheral vision back.
2020 has been a no good horrible year for everyone. To be honest in spite of all of this crummy-at-face-value news, I feel uniquely prepared and qualified to face brain surgery and radiation after being there for Robbie a few years back. Still though, this is my third surgery of the year (after only having my wisdom teeth out before this) and the stakes are a bit higher when operating inside someone’s head than on their knees. There’s still a looming prospect of a few months where I will have some work restrictions (as a yoga teacher/fitness instructor) and will probably have a significant increase in fatigue, along with who knows that side effects from starting hormone therapy.
Since letting friends and family know about my diagnosis I have been floored with the outpouring of love and support. So many people have asked me what they can do at this point, and I’ve been at a total loss. I really feel like I’m getting the emotional support I need through this journey, but I’m facing a daunting litany of tests, imaging and treatment. None of this will come cheap, especially when my ability to work has been so restricted this year already and Robbie is now facing serious uncertainty in his employment: he got furloughed five days before my MRI and we’re not sure if/when he’ll be brought back in to work full time. We're looking at some serious medical debt and $1000 COBRA payments a month - as we try to slowly work ourselves out from under our high deductible.
We are really aware that so many people are currently going through financial hardships during this pandemic - and completely understand if you can't donate. But so many people have asked how they can help right now, and if you’d like and are able to help financially support us as I go through surgery, radiation and all the followup care I'll need after, every dollar is appreciated and goes a long way.
-Ciara
Friends and fam are all probably very familiar with our story - in 2009 I went to the University of St Andrews in Scotland for a few years of college, where I met and fell in love with Robbie Cunningham back in February 2010. We got married in Colorado on February 15, 2014 and on October 18, 2014, Robbie had a series of seizures and was diagnosed with an anaplastic astrocytoma, which is a malignant brain tumor. Unfortunately for us at the time, we were still waiting on the US Citizenship and Immigration Services to process the paperwork that would have granted Robbie his permanent residency (“green card”) and the right to buy health insurance. Facing the prospect of going into six-figure debt overnight had we stayed in Colorado, we were lucky enough to be able to get on a plane back to Glasgow, Scotland to stay with his parents. Robbie got the surgery he needed on November 7, 2014. That was the start of a sixteen month journey through radiation and chemotherapy, which resulted in nearly five years of successful management of his brain cancer.
Really unfortunately, in December 2019 we found out that Robbie’s tumor had started growing again. In January 2020, he got a round of Gamma Knife radio-surgery (effectively a super precise but extraordinarily high dose of radiation) - and since then, his three-monthly MRIs have been totally stable. We've been really blessed that he hasn't seen any acute side effects from this round of treatment.
After addressing Robbie's recurrence in January, I've found that the year has been an extraordinarily rough one for my health. Right after Robbie’s Gamma Knife, we went skiing in Vermont and I tore my ACL - which needed a surgical repair which was put on hold during the NY coronavirus lockdown. Unluckily for me, I was one of the .2% (basically one in 1,000) of arthroscopic ACL reconstruction patients who got a staph infection after surgery. On June 12, I had to go back under the knife so my orthopedic surgeon could clean out my knee and try to prevent that infection from reaching my joint (which successfully we avoided). Needless to say, all of that sucked. It held up my recovery process, caused pain, and was a blow to my income. All of the recovery time needed after my ACL tear has had a huge limitation on my income as a yoga teacher/fitness instructor (and independent contractor, not generally an employee). Not to mention, since gyms and yoga studios have been closed in New York from March to August, there are simply less opportunities for me to make money. That has certainly been tough, though hardly a unique struggle.
Well, the summer did not get any kinder! Through July I went through a small litany of tests that led me to have my very first brain MRI on August. By then I knew that it was highly likely that we would find an issue on the MRI with my pituitary gland. Pituitary disorders are extraordinarily common - according to Johns Hopkins about 25% of people may have a pituitary tumor and not even know it! However, mine has turned out to be anything from common.
I’ve been diagnosed with a growth hormone-secreting macroadenoma. Macro- my tumor is bigger than 1cm // Adenoma - pituitary tumor. Most adenomas are non-functional - they don’t produce their own hormones. Almost all pituitary tumors are benign - so it’s extraordinarily unlikely that I have cancer. However. My tumor is way bigger than 1cm, has invaded my cavernous sinuses, is displacing my optic nerve, and is pumping out growth hormone like nobody’s business (well, not any healthy 28 year old!). It’s probably been growing for a decade or more. See that shiny nose-shaped thing near the mouse? That's my tumor, and those little holes are my internal carotid arteries.
The way it’s producing growth hormones means that I’ve got an additional diagnosis - acromegaly. Acromegaly is a chronic, rare disease (approximately 5 in 1,000,000 people might have acromegaly !) and because it’s so uncommon and because the physical signs of it come on so slowly and bewilderingly, it can be really hard to diagnose. If it goes undiagnosed for a long time it can lead to serious illnesses and be life-threatening. Luckily I’ve gotten a diagnosis and it’s led to an extraordinary feeling of relief for me. Every strange thing my body has done in the last decade can be explained by this disease! It explains my feet going up a size between ages 22-23, my ring size going up two sizes since I got my engagement ring in 2013, my worsening depression, my adult acne, even how much I sweat. It definitely explains the three “ear infections” I was diagnosed with between November 2018-July 2019 and onset of TMJ around a similar time — excess growth hormone was causing my jaw to literally grow, my bottom teeth have been spreading, and the pressure in my sinuses and have all been caused by this tumor (not just allergies like I was told!). I regularly deal with headaches and the feeling of “ear popping” daily, fatigue, and some joint discomfort. Since getting the MRI I’ve gotten a visual field test and guess what? That pressure on my optic nerve from the tumor has been subtlety effecting my peripheral vision! I wasn't aware of any vision changes at all, but I had noticed that I have had some extra clumsy moments over the last year or two.
So what does this mean for our future? On August 3 I got the MRI and found out it was this big old tumor. Nine days later I met my neurosurgeon, and on August 17 I met with the ENT that my neurosurgeon wants to operate with for our pre-op visit. That’s right, two brain surgeries in six years between Robbie and me. Because of how big the tumor is and the way it’s totally circling my left internal carotid artery, there’s no way the surgeon will get the whole thing. That means that after surgery, I’ll have to prepare for radiation to try to “zap” the edges of the tumor so that it doesn’t grow back. With all of the hormonal complications I’ve been low-key dealing with for the last decade, I’ll also need to see an endocrinologist for the foreseeable future. Hopefully the surgery and radiation will lower my growth hormone levels considerably, but I’ll need the endocrinologist to medically lower any extra growth hormone and support the extraordinarily low levels of other hormones in my system that I need to stay healthy. Maybe with some time to decompress, I get my peripheral vision back.
2020 has been a no good horrible year for everyone. To be honest in spite of all of this crummy-at-face-value news, I feel uniquely prepared and qualified to face brain surgery and radiation after being there for Robbie a few years back. Still though, this is my third surgery of the year (after only having my wisdom teeth out before this) and the stakes are a bit higher when operating inside someone’s head than on their knees. There’s still a looming prospect of a few months where I will have some work restrictions (as a yoga teacher/fitness instructor) and will probably have a significant increase in fatigue, along with who knows that side effects from starting hormone therapy.
Since letting friends and family know about my diagnosis I have been floored with the outpouring of love and support. So many people have asked me what they can do at this point, and I’ve been at a total loss. I really feel like I’m getting the emotional support I need through this journey, but I’m facing a daunting litany of tests, imaging and treatment. None of this will come cheap, especially when my ability to work has been so restricted this year already and Robbie is now facing serious uncertainty in his employment: he got furloughed five days before my MRI and we’re not sure if/when he’ll be brought back in to work full time. We're looking at some serious medical debt and $1000 COBRA payments a month - as we try to slowly work ourselves out from under our high deductible.
We are really aware that so many people are currently going through financial hardships during this pandemic - and completely understand if you can't donate. But so many people have asked how they can help right now, and if you’d like and are able to help financially support us as I go through surgery, radiation and all the followup care I'll need after, every dollar is appreciated and goes a long way.
-Ciara
Organizer
Ciara Cunningham
Organizer
Syracuse, NY