As of today, I am two weeks post-op from having my pituitary tumor removed. It is too early to tell for certain, but based on my post-op MRI, CT Scan, and blood work, it looks like my Cushing's Disease has been cured.
I am overwhelming happy and filled with love and gratitude.
I did not realize how sick I was. I was sick for so long with a rare, chronic illness. It just becomes a part of your life. Being tired, anxious, depressed, puffed up like a marshmallow, anemic, covered in bruises, having my muscles wasted away, foggy in the brain...it was just something I dealt with and worked around as best I could. I tried not to complain. I did not really talk with people about it. I just retreated into myself. I understand now why people stay in abusive relationships or in jobs that make them miserable. It is not just inertia. It's just easier to deal with the devil you know.
I remember waking up in the OR and someone taking out my breathing tube. I had nightmares about that and the surgery itself for almost a week. I could not breathe through my nose because of the nasal packing, the stents in my nose, and the inflammation of my sinuses. I was still loopy at that point and not yet in pain. I remember hearing someone dictating a note and saying, "Miss Katz is a delightful 32 year old woman", and I said "You're right. I am delightful. Thank you". Then they took me to the Neuro ICU and I started to become more aware of what was going on. I had an IV on the left side of my chest, my left foot, my right hand, and an arterial line in my right arm. I immediately asked for them to remove my foley catheter (I HATE those things), but they said I had to wait until 5pm (it was about 1:30pm at this point) when they got my urine sodium level back. Steph says that I was totally annoying and trying to get them to just remove everything. Well, to her I say that I am a SURGICAL SUPERSTAR and in order to be truly great at something, you sort of have to be annoying. Really successful people are always assholes. Look at Martha Stewart or Bill Gates. You have to be a perfectionist. You have to let no one get in your way. You have to keep reminding your incredibly sweet ICU Nurse (Rosemary, she is the best and I am forever grateful to her for her nurturing care) that you want these IVs out NOW. Every time she came in the room I would try to get her to remove another IV. I spent one night in the Neuro ICU and I had no intention of spending any more nights there. They come in hourly to do stuff to do and it is impossible to rest or recover. And I knew there was no way I was getting on the regular Neuro floor with an Arterial Line and a Foley Catheter.
Despite my surgical superstar status, I felt awful. I don't even know how to describe how badly I felt. It was not pain from the surgery. It was because I had no cortisol in my body and my body has been used to excess cortisol levels for so long. But they had to get me to the point of adrenal insufficiency to make sure that the surgery was a success. If I was still pumping out cortisol, then that meant there was still tumor in there. So it was really a good thing to feel like I was on the verge of death. I would have cried, but my sinuses were too stuffed up. But I prayed for sleep or death or anything to make it just stop. I wondered if I should have just let the Cushings slowly kill me instead of having surgery. That was how truly awful I felt. FINALLY they got my cortisol level back (it was 2, which so so incredibly low) and gave me some hydrocortisone. That's when my life started to get better and I began to feel like maybe I was going to get through this whole ordeal.
Already I have seen so many benefits from the surgery. My face and neck are much less puffy. My feet look like feet again and not bear paws. I have lost 15 lbs since my pre-op appointment. My blood pressure is back to normal. My vision is crisp and clear. I want to go out and socialize again. I feel happy and actually have some energy. It is probably going to take a year to truly know what normal feels like, and to lose weight and gain back all the muscle mass that I lost, but this is an excellent start. It is exciting for me because I feel like I have been given a second chance at life. If I had waited much longer, they would not have been able to do the surgery. The tumor was perilously close to my carotid artery and if it had started to grow on that artery I would have been toast. I am forever indebted to Dr. Lim for taking on my case. I know it was exceptionally difficult and even on the morning of the surgery he told me there was a chance that he could get in there and be able to do nothing. He took a chance on me after that "Other Surgeon Who Will Not Be Named" dumped me because my case was too complex and I didn't have the best chance of being a success statistic.
I will probably be on hydrocortisone for a few months until my pituitary gland wakes up and I start to produce the correct amount of cortisol on my own. It will also take a few months to see if my reproductive and thyroid hormones start to work again on their own. If not, I'll just have to take synthetic hormones. Now that I know what life is like post-tumor, I have no qualms about doing that if that's what it takes to keep living this life. The hardest thing right now is taking it slow. Like I said, this process is going to take time. I am not a patient person by nature. I want to make plans. I want to DO ALL THE THINGS. I want to SEE ALL THE PEOPLE. I really overdid it this past weekend and have consequently spent yesterday and today mostly in bed. It just feels so good to be interested in life again. I always loved my family and was grateful for them, for Ruthie, my friends, for my life in general, but I was really struggling. I see that now. I feel like I am now more myself than I ever have been, but I also feel like I barely know myself because all of this is new and foreign to me. I hope that makes sense.
The days I was in the hospital, Steph stayed with me (she is the best nurse EVER) and Liz stayed at our house with Ruthie. I have made three really good decisions in my life: 1) My relationship with Steph, 2) Having Ruthie, and 3) Having Liz join our family as our nanny/friend/plant manager/coffee dealer. I did not worry about Ruthie at all while I was in the hospital. Liz sent me pictures and videos of her. When they moved me to a regular floor, Liz brought Ruthie to the hospital so I could visit with her for a little while because I missed her so much. Liz basically took over and was a single parent for Ruthie for those few days. Steph, Ruthie, and I all love Liz so much. I don't know how we would have managed if we had not stolen her away from working at Artifact. I feel like she was fated to be a part of our family.
My mom was in town for a week and took care of Ruthie while I rested and to give Liz a break after I was in the hospital. She flew back home to Arizona today. I wish she would come and live with us. Watching them together is one of the great lights of my life. It is wonderful to see how much fun they have together and how much they love each other. It has been difficult to not be able to pick Ruthie up and hold her, but my mom would bring her to my bed in the morning and we would have "picnic breakfasts" together on a towel. If I sit in a chair and someone puts Ruthie on my lap, I can hold her that way. We have also been snuggling in bed together and watching 15 minutes or so of "Annie" or "Mary Poppins" at a time.
Our friends have been amazing, as always. Every day I get cards and presents in the mail. I get sweet little notes all the time in my e-mail and on Facebook. People have sent me food, books, and come over to visit and to play with Ruthie. I feel so cocooned by love from this network of people. I don't know what I have done to deserve all this. I feel like I have given next to nothing in the past three years because I have been sick and tired, blah, and not nearly the best version of myself. As soon as I am 100% again, I am going to start paying all this forward.
So, that is the update for now. Here is a photo Emily Stieff sent me of a goat she encountered this week in Italy. I feel like he is my spirit animal.
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