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To Myself on the Day of My Cushing’s Disease Diagnosis

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Dear Jen,

Oh sweetie. I know you just got some really disturbing news. You just opened up your MyChart account and found a message from Dr. Mulligan telling you that you have Cushing’s disease, and he recommends surgery to remove the pituitary tumor that’s caused it. I know you’re really scared right now. I also know you’re angry, that you don’t understand how God let this happen to you, that you want somebody to lash out at or blame. I just want to tell you to take a deep breath, sit down and that everything is going to be OK.

First off, you’re going to see Dr. Recinos again. You’re going to wait over an hour in an exam room because he’s going to be way behind that day with some serious cases. Your husband will be with you. He’ll try to keep you calm, but it won’t work. You’ll end up pacing in the hallways. The nurses will keep looking at you funny because they know you’re angry you have to wait so long. You’re not really sure why you’re angry except that you’re really nervous and scared. It seems ridiculous somebody would make you wait this long, knowing you’re about ready to jump out of your skin because you’re so freaked out. By the time Dr. Recinos comes in, you’ll sit down, he’ll look at you with his kind face and say in the most heartfelt way possible, he is very sorry he made you wait. That moment you will burst into tears and cry so hard you’ll end up hiding your head behind your husband’s shoulder while two residents look on in horror.

That appointment will go much better after that point. Dr. Recinos will explain to you the reason you’re so emotional, or one of the reasons, is because of Cushing’s disease. He’ll explain to you how you have so much cortisol in your system that a lot of things are happening to your body that you don’t really understand, including weight gain, high blood pressure and emotional outbursts like this one.

Then he’ll explain the surgery to you. Just know you are going to be freaked out by what he says, and spend a lot of your time convinced there’s no way you’re going to survive the surgery — that all of the horrible things he told you that could possibly happen, will happen to you.

That’s not going to happen.

But you’re going to think it will for a while, and then one day you’re finally going to wake up and realize that he does the surgery three to four times a week, and most patients have done extremely well. You’ll realize the percentage of complications is 1 percent. Then you’ll meet your second surgeon Dr. Woodard, a really nice guy. When you tell him you’re nervous he’ll look at you and say, “Well you don’t really have a choice do you?”

And it’s true, you don’t really have a choice.

You could keep the tumor in your head and continue to get sicker and sicker until one of the things the Cushing’s has caused, kills you. That’s not any way to live. And you know that, but it’s so hard because you want to believe for some reason, you won’t need to have the surgery. You even keep it in the back of your mind up until the day of the surgery, “I can back out of this at any time.” You won’t. You can’t really, but for some reason hanging on to the fact you could back out at any time comforts you.

You’ll talk to Dr. Recinos’s nurse Suha frequently. She’ll be very supportive and answer your questions openly and quickly. When she says to you for the second time, “Is there anything else we can do for you?” you will say, “Yes. I want to talk to someone who’s done this before.” You need to know that a real person actually made it through the surgery and came out OK. You will meet your new friend Rohnda. Even though your church, friends, family and husband are being extremely supportive, you will get the knowledge and support from Rohnda that only someone who’s been there can provide. She will be a great friend to you and an infinite giver of support. You’ll thank God for her when this is over. She’ll be the one who tells you one last time before the surgery that you are brave and you will believe her.

On the day of your surgery, your husband and mother-in-law will bring you to the hospital at 5 a.m. You’re so tired and oddly calm, you actually start cracking jokes with the woman checking you in because she is having a hard time spelling your husband’s last name. You quip, “Now you know why I didn’t change mine.”

You’ll get taken to a small room where they take your vitals, do a pregnancy test and get you dressed for surgery. They’ll take you to the OR from there. You’ll say goodbye to your husband with a brave face, and then cry when you get outside the OR room because you’re so scared. Your friend Emily, who works at the hospital in the surgical department, will wait with you outside the OR and comfort you until they are ready to take you in (she’ll also fix it so you have all the best nursing and surgery staff that day). Once you’re in the OR, it will go pretty quickly. You’ll see Dr. Recinos dressed for surgery. He looks so calm and confident you feel a little better. Then you won’t remember anything until they wake you up after surgery.

And you do wake up! Hallelujah! Your first thought when they tell you the surgery is over is, “I made it this far.” You realize in the extreme haze of anesthesia, you were safe the whole time. You were riding on a wave of prayer and good wishes from your church, your friends and your family. You were safe the whole time.

I won’t talk too much about your time in the hospital. Just remember to rest as much as possible. Despite the noise and feeling really awful when your cortisol drops to extremely low levels, you are going to make it out of there and be able to recover at home.

When you get home you’ll try to take it easy, but you’ll keep pushing yourself. Your husband will cook for you and take you for a walk once or twice a day. You’ll keep trying to be normal and do things like take a shower, but then you’ll be knocked out for the next four hours. The anesthesia haze will stay with you for two weeks. You really won’t feel better until after that. It will be hard not to bend over or blow your nose. You’ll really struggle with that. It will be extra fun when you get to start doing sinus rinses and big nasty globs of bloody packing starts coming out of your nose. Better out than in! One more thing, you’ll feel bad about taking the oxycodone. Don’t. You had brain surgery and that’s going to cause some head pain.

The good news is you’ll keep getting better and better. The challenging news is you’ll go back to work too early and end up having to take more time off a couple months later. The steroid taper is going to be really rough on your body. Even though you end up feeling guilty for not working, trust me, it’s the best thing for you. In the end, your supervisor will replace you when you are on medical leave. This might upset you, but believe me it is for the best. It’s going to enable you to make a fresh start. That job was no good for you anyway. You know you wanted to quit — you just hadn’t found another job yet. Your employer will be very generous by keeping you on your insurance for two months while you make multiple bids on available positions. There will only be one position you’ll get an interview for in that time, but you’ll turn them down when they ask you to go to the next level of interviewing. It was too much like the job you just lost and you couldn’t see letting yourself get caught up in another high-stress situation. You just had brain surgery. That changes a person. You won’t be willing to let yourself get compromised again like that in the future.

At 11 months post surgery you are doing great! You’ll have just finished up a course at Tri-C called “Women in Transition.” Your psych doctor has started lowering your anxiety meds, allowing an increase in energy throughout the day. But the great new is your test results show your adrenals are functioning normally! You can now start the final taper off the hydrocortisone you’ve been taking faithfully since the surgery. You started off taking 60 milligrams a day and you’re now down to 5 milligrams! In 10 days you’ll be off the steroids completely.

There is still a question of whether or not your blood sugar is too high, but once you get off the steroids you can test again. Your last blood pressure reading was 115/80 and you’ve lost 11 pounds. You don’t get hot and sweaty like you used to before the surgery, and the anxiety has eased up a bit. For the first time since the surgery, you actually feel good. Take a bow, girl. It looks like you’re in remission. Your eyes are bright. Your future is wide open.

You are crushing Cushing’s.

You can do this. I believe in you.

Follow this journey on Graceful When I Need to Be

Originally published: August 10, 2016
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