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.
