Two years later
A continued search for answers, and a new understanding of what it means to be chronically ill.
It’s been two years since my neurosurgery and I’m angry.
I’m angry because I thought I would be healthy by now. I’m angry because I can’t even get a clear reading of my hormone levels. I’m angry because my doctors put their egos before my care. I’m angry because I’m still suffering. I’m angry, tired and frustrated.
When my pituitary tumor showed up on an MRI nearly three years ago, I was scared but also took my cues from my doctors at the time who assured me that a simple surgery to remove the tumor would eradicate the disease, and the experience of blood tests and injections and medications and procedures would be a blip in a long life. But as I learned in early 2019 a few months after my surgery, some of the tumor cells were not able to be removed and the harmful effects of excess IGF-1 hormone would continue.
One year out from my surgery, I was starting to understand that many challenges lay ahead. And in January of this year as I got a clearer picture of what I was dealing with, I wrote about the many twists and turns on my health journey. Somehow it’s only gotten twistier and turnier since then.
Long story short: There’s still no consensus over whether my tumor has grown since my surgery. According to an IGF-1 measurement from one major lab, my levels are normal, and according to another major lab, they’re off the charts. I’ve increased my weekly injections to twice weekly, which has so far made no impact on my levels or symptoms. I’m working with doctors at two major hospitals, which is creating more confusion than help. I know in my body that the disease is still very much present. I’ve adjusted to the idea that I will never be truly done with Acromegaly, and that the best I can likely hope for is managing my symptoms.
The term “chronically ill” has taken on new meaning. I used to think it only applied to people with a visible disability, or those with easily-recognized diseases like diabetes or cancer. But after dealing with my own rare illness for years now, it’s made me think about how many people I’ve interacted with through work, school, life who’ve been chronically ill, suffered silently, and I never knew.
There are still days when I’m out on a casual walk and my fingers swell, my body temperature is totally off, and I feel like I’m completely out of batteries. I feel leaden and brittle all at once. But from the outside, you probably wouldn’t know. Maybe I look a little sluggish, a little out of breath. The screaming inside my head, the self-consciousness, the abject frustration at not being healthy when I was told this would be over by now can’t be seen with the naked eye. And while I try to be open about it with my loved ones, the experience of suffering through a chronic illness has created a deep loneliness because no one truly understands how I feel.
And a global pandemic on top of it all certainly hasn’t helped.
I wish I had a sunnier perspective, and I wish I had better news to report. But I feel it’s important to continue being transparent about how much this all really sucks because I think it’s important for people to hear. Since I’ve been writing about my Acromegaly experience, I’ve had multiple strangers reach out to me to say they came across my posts in researching the disease and that it made them feel less alone. I was also able to give them advice about navigating the wild world of endocrinology and help connect them to resources. It’s made me realize what a dearth of information that I — just a patient — have filled in so many blanks left by health care providers.
So, what now? I’m going to consult virtually with yet another doctor who my dad discovered thanks to even more of his diligent research. This doctor, who I’ll see next month, is based in California. He’s an expert in my specific disease, not just pituitary disorders in general, and I’m hoping he’ll be able to look at my case and size up what needs to come next.
I’ve said it before, and I’ll say it again: When it comes to your own health, complacency is not an option. If you feel you’re receiving substandard guidance, if you feel your doctor isn’t treating you with appropriate respect and care, it is your right to seek alternatives. It is your right to question them. I’ve found the way doctors respond to being questioned reveals their true character. Good doctors understand that you are allowed to be selfish when it’s your own quality of life at stake.
I remain grateful to my parents, my boyfriend, and friends who’ve remained fiercely supportive as I continue to struggle. And I’d be remiss if I didn’t mention one of my greatest sources of support throughout this deeply challenging time: a group chat with three friends I met via Twitter who’ve helped me get through some of my darkest days by talking about health, illness and life in the most honest and nonjudgmental way. I never knew how much I needed them until I found them.
I hope to be back with better news soon. Until then, wishing everyone good health and better days ahead for us all.
M
