A blog and post-surgical update

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.

Christ Has Risen, and so has my blog!

No promises about continuing to write/post on this blog, though it could be a nice alternative to blowing up Facebook with pictures of Ruthie every day. We shall see.

Anyway, I have something very specific that I want to put out there, an announcement of sorts. I have been thinking about how to tell people about this for a long time, and I believe now I am finally ready to talk about it in a more public way. Only a few people know as of now, some family members and our closest friends.

I have Cushing's Disease. There are different causes for Cushings, but in my case it is an endocrine disease that is being caused by a pituitary tumor. On June 20th I will FINALLY have surgery at Johns Hopkins to remove the tumor. A neurosurgeon and an ENT surgeon use small instruments to go up my nose and into my brain to remove the tumor. Because of a complication I have (a condition called Pseudotumor Cerebri, which will likely go away after my tumor is removed), I will need to be in the hospital for a night before the pituitary surgery. I'm going to need a lumbar catheter inserted so they can monitor my intercranial pressures during and after surgery. This is to keep me from developing a CSF (cerebral spinal fluid) leak after surgery. If I develop a leak or my intercranial pressure remains high, I will need to have a shunt and that is not something you want. The surgery to put in the shunt is easy, but there is a high complication rate and if you have a shunt in your brain you need to have surgery every 2-3 years for the rest of your life to replace/repair the shunt. So Thursday night I'll be in the hospital for the catheter insertion and monitoring. Friday and Saturday I'll be in the neuro-surgical ICU after surgery. Sunday I'll be moved to a regular step-down unit. And then on Monday, if everything goes as planned, I'll get to go home!

I'm not particularly nervous about the surgery itself. I've been feeling horrible and dealing with the symptoms and complications of full blown Cushings for over a year now, so I'm pretty ready to have this sucker cut out of me. When I saw the tumor on the MRI I felt so much hatred toward it. I don't feel like myself. I don't look like myself. I struggle to get through many days because I am so tired and weak. My memory and cognition are way off. I am short with Steph because I am frustrated from feeling like shit all the time and not being able to care for my daughter the way I would like to. Steph is upset because she has to take time off of work to help me or take me to doctor's appointments, so she has to ask her colleagues to cover some of her workload. Neither of us are good at asking or relying on others for help and so that is a difficulty we have been facing.

The outcome looks good. Based on the location of my tumor and the fact that they can see it well on the MRI, there is an 80-90% chance that they will be able to get the entire tumor out and I can go on with my life and be healthy. However, there is about a 30% chance of recurrence at some point in my life. I will need to get MRIs yearly and blood tests on a regular basis.

I'm not really sure what to expect regarding the recovery. I know that I am going to have a really bad headache for a few weeks. I won't be able to lift more than 15 lbs. for at least 8 weeks, so I will not be able to pick Ruthie up. That is what kills me the most. I try not to think about that. If I think about it I start to cry. You can't drink through a straw or breathe through your nose. You can't sneeze for 3 months. Then there are the endocrine issues. I have had abnormally high cortisol levels for years and years, so coming off of all that cortisol is not going to be pleasant. I will need to be on steroids for a few weeks in order to help ease that transition. From what I've read online, people say they sleep a lot. I guess that's good because I'm going to have to be flat in bed anyway, so better to be asleep than to be bored.

I think the biggest struggle for me will be staying in bed and allowing other people to manage my house and look after Ruthie. I am used to having everything precisely the way I want it during the day. My mom will be here for a few weeks to help us (thank God) and that is easier for me to deal with emotionally. She and Ruthie are already very bonded and I have no question that my mom knows what she is doing. And I feel completely comfortable asking my mom to do things a certain way if I feel strongly about it. However, we are also in the process of hiring a nanny to watch Ruthie for the rest of my recovery time. That is harder for me. How am I going to be able to sit in bed while some rando watches my child for me downstairs? I am going to want to go downstairs and meddle in everything or at the very least supervise. I worry that Ruthie will feel abandoned by me or think I am ignoring her. I can't say something like, "Oh, Mama has to go to work so we can eat good meals and do fun things!". I'll just be laying like a log in the other room. I would die without this surgery, and it is going to be life-altering in many ways, so it does benefit Ruthie in the long run, but there is no way that she can understand that now.

Right now I am trying to mentally and emotionally prepare myself for the separation from Ruthie. The days without seeing her while I am in the hospital will be the worst. I will rely on my mom and Steph to send me photos and videos. I also have a billion pre-op appointments in the upcoming weeks, so that will keep me busy. I basically am at the Johns Hopkins Outpatient Center twice a week these days for various blood tests, scans, and appointments with specialists.

So...now you all know. I was never trying to hide anything from anyone, but it's difficult to just be like "Guess what, I have a brain tumor!". I don't want people to walk on eggshells around me or feel like this is all we need to ever talk about. Perhaps it is weird to blog about this and have that be the way most people find out, but we live in a digital age and it seemed to make the most sense to me. I'm not going to call up everyone I know and tell them. Sending out a text would also be weird. I felt iffy about all my options, but this one felt best to me in the end.

OK, that is all for now. Maybe more on this blog later, maybe not. No promises, people.

The Cherry Song

I gave my love a cherry...the origin of the name of this blog.

"The Cherry Song", also called "The Riddle Song", is a 15th Century English lullaby. Steph's mom used to sing it to her when she was a little girl. Sometimes Steph would sing it to me late at night before we went to sleep. Now we sing it to our daughter, Ruth. Here are the words as I learned them (when I went to do some research on the song, I found multiple versions of the lyrics):

I gave my love a cherry that had no stone.
I gave my love a chicken that had no bone.
I gave my love a baby with no crying.
I gave my love a story that had no end.

How can there be a cherry that has no stone?
How can there be a chicken that has no bone?
How can there be a baby with no crying?
How can there be a story that has no end?

A cherry when it's blooming, it has no stone.
A chicken in the egg, it has no bone.
A baby when its sleeping, has no crying.
The story of our love, it has no end.

I'm not quite sure what I want this blog to be, but I feel like there needs to be some sort of documentation that I can look back on and that possibly Ruthie can look back on one day. Every day of parenting brings new emotions and lessons with it, but time goes by so quickly (though I admit that at times the days/nights feel very long) and I already have trouble remembering Ruth's very first days on this earth. The actual birth I remember pretty clearly (and hope to write about), but the four days and three nights we spent in the hospital are mostly a blur.

Photo: A blooming cherry tree in Sherwood Gardens. I believe I took that photo in 2011. We were having a luxurious weekday picnic with Jess and Mike. I can't wait to take Ruthie to Sherwood Gardens this Spring. Lots of great photo opportunities, plus who doesn't love a weekday picnic in the park.