You Just Couldn't Say Good-bye

It has been almost a month since I had my follow-up to the follow-up MRI to check the status of Mike Wazowski and his residence in my brain. If you follow this blog or you know me, you know that in September of 2015 I was diagnosed with a tumor on my pituitary gland. A tumor that even the neurosurgeon described as HUGE. From the MRI pictures you could see that the tumor was a big round circle with a smaller darker circle inside of it. The smaller circle looked like an eye, so I "lovingly" named the tumor Mike Wazowski. In July of 2016 I found out that after surgery, Mike was still hanging out, at least part of him, and he had brought along a friend, a cyst growing in the exact same place where Mike had been evicted. Surgery number 2 in November 2016, Follow-up MRI in February of 2017, and finally, Follow-up to the follow-up just last month. The good news is the cyst is gone. The other news, I won't call it bad, is that Mike has left a little piece of himself with me. I knew this right after my second surgery. There was a little piece of the tumor attached to a blood vessel in my brain. As I'm sure you can imagine, that's pretty delicate stuff. The neurosurgeon couldn't just go ripping things off of a blood vessel, and so Mini Mike was allowed to stay with the understanding that his blood supply would be cut off, and he would be getting a weekly dose of Cabergoline, a drug that inhibits his growth. Just last week I saw my neurosurgeon to find out how Mini Mike was dealing with these terms. Here's the good news about the "not bad" news. Mini Mike hasn't invited anyone else in, and he hasn't gotten any bigger. He's just staying right where he was, away from my optic nerves and anything else that might cause me trouble. Dr. Sahni, my neurosurgeon, and I decided to just let Mini Mike stay, and, for now, we would extend his conditional lease for another 6 months. Did I want him to move out totally? Absolutely, but I guess he just couldn't say Good-bye, and, for now, I'll indulge him as long as he goes by the rules.

Not What I Expected

Well, ladies and gentlemen, tomorrow will mark a week since round 2 of brain surgery. Before going in last week, I thought, this won't be as bad. At least I know what to expect this time. I got through it before without many issues, this should be the same....right? As my drama teacher used to say when we flippantly assumed something, "WRONG!" Yes, I was going in for the same procedure, a transsphenoidal hypophysectomy, something my nurses must not have known right away while prepping me for surgery last Wednesday morning because they kept talking about someone coming in to do my fiducicials - something used to help in surgery if it were being done cranially. It wasn't, and, thank God, they figured that out. They rolled me down to do a CT, then an MRI before I ever went into surgery. I don't remember much after that. It was probably around 9:30 in the morning when surgery finally began. I probably woke up in recovery around 8pm that night. Yes, if you read anything previous to this, it was MUCH longer. Why?, you may ask. Well, they removed as much of the leftover tumor from last year and drained and removed the cyst that had developed, and closed me up. Then they wheeled me into the MRI room, while still under anesthesia to check to see if anything else was left. There was. Back to the operating room to open me back up and do a little more house cleaning, essentially 2 procedures for the price of 1. So, about 11 hours later, surgery was over. This compared to approximately 5 hours last year. What does that matter?, you might say. I am finding a whole hell of a lot. First of all, my throat hurt terribly from having the intubation tube in it for so long. This made swallowing almost excruciating. Consequently, this made eating extremely difficult. Added to that, just like before, my entire nose and nasal cavity was packed. No breathing through the nose. If you've ever had sinus issues and been all stopped up, you know what it's like trying to eat and breathe at the same time. Sleeping was a whole other issue. The first night I woke up every 10 minutes as breathing through my mouth caused EXTREME dryness. The roof of my mouth also hurt from the intubation tube, so trying to close my mouth and swallow with next to no saliva was a real chore. The next night got a little better. I only woke up every 20 minutes, and by the third day I actually took a nap sitting up for almost an hour. By Saturday I was allowed to come home, but to my disappointment, I still had to keep my nose packed until Monday. I was devastated. Last time, my surgery was on Tuesday, and my packing came out on Friday. I guess it could have had something to do with the fact that they actually rooted around twice in there and had to make sure healing was well on its way. Finally, joy of joys!, yesterday (Monday) my packing came out. You cannot know how happy I was, aside from the fact that it feels like your brain is really coming out through your nose. I CAN BREATHE AGAIN! I am still sleepier than normal, and my throat still hurts, but things are getting better day by day. I will have a follow up visit with my neurosurgeon on November 29th. After that I will have an MRI in mid January to see if everybody is finally OUT. Spoiler Alert: It seems there is some that is attached to a blood vessel, and I may still need Gamma Knife Surgery (pinpointed radiation) to remove that, but we will cross that bridge if we come to it. For now, I am thinking that Mike and his "cysta" are finally gone, and I will continue to heal. Thank you all for your good thoughts, prayers and surrounding me with love and light. I am not out of the woods yet, but I'm in a nice clearing for now.

I Thought You Were Gone, Mike!

A month ago I posted the results of my follow up with the eye doctor after my tumor was removed, and the results were amazing, even by his standards. Almost all of my peripheral vision has been restored, and still could improve more with time. Yay! I guess such great results kind of set me up on a mountaintop about this whole experience that it’s all over, and life is, once again, back to normal, or as normal as my life is. Not so, my friend. Last week I had my follow up with the neurosurgeon after my New Year’s Eve MRI, 2 months post tumor removal. I looked at the CD they give you. It definitely looked different and that hole was no longer full of the big white spot as you see in the picture, but I have no idea what I’m looking at. As I sat in Dr. Sahni’s office last week waiting for him to come in, I was imagining what he’d say:

Dr. Sahni: Well, Miss Moore, the tumor is totally gone. Dr. Astruc says your vision is almost completely back to normal, so unless you have any problems, I’ll see you in a year. Nice to meet you. Good luck!

That’s not exactly how it went. It’s nothing earth shattering, but there is still some of the tumor left. It is now in the bottom of the cavity where my pituitary gland lives and far away from my optic nerves, so nothing is being affected. It’s just sitting there, and it might just sit there forever, which would be the preferred scenario, but it could also grow back. Cue sound effect of Boos and hissing from the crowd. Apparently it was huge! In fact, Dr. Sahni said that many surgeons would not have removed it by the method mine was removed, through the nasal cavity. It would have been the “movie version” of brain surgery, shaved head, boring into the skull, through the brain stuff. As large as it was, and given the way it was removed, the doctor could not be overly aggressive because that could have caused some permanent damage. So, I am sure you are wondering what happens now. Well, you are if you’re still reading this. In 4 months I have another MRI, cha ching $$, $2400.00, to see if it has grown. If it has, we do the whole thing all over again, or if it hasn’t, we wait, the word everybody loves to hear. In another four months from July we do another MRI, cha ching $$, another $2400, to see if it’s grown, if it still is just sitting there, as my grandmother used to say, like a bump on a log, we wait 6 months, and you guessed it, another MRI. It seems Mike Wasowski just couldn’t bear to leave his Boo. But this isn’t a Disney movie, and I would have preferred for Mike to have just walked back into that closet and shredded my door for good! 

It's Not Brain Surgery...Wait! Yes It Is!

The big white spot in the center is the tumor.

On September 9^th I went to the eye doctor. It had been over a year since I had had an exam, and it seemed that more and more issues were coming up with my vision, especially at night. I went for the exam, and if you’ve ever had an eye exam, you know they put this big machine in front of your face that looks like a huge, bionic pair of glasses.

 The room is dark, and they show you on the wall in front of you, about 15 feet away, a strip with four capital letters, black on a white background. They test one eye at a time. First up – the Right eye. I could see the first 2 letters fairly clearly, the last 2 I couldn’t, and when I say I couldn’t, I mean, THEY WERE NOT THERE! Not fuzz, not unclear, ABSENT! I blinked my eyes, and they would appear briefly, but fade away to invisibility. I told the doctor this. He switched to the left eye, same problem, but I could see 3 of the letters, the 4^th pulling the same disappearing act (reading right to left.) We finished the exam. He turned on the lights, and was writing out my prescription, ready to send me on my way. I stopped and said, “Wait a minute! What causes that, the letters disappearing?”

He paused a moment, then decided he might dilate my eyes, and “take a look” I waited for my pupils to dilate, then went back into the room and he looked into my eyes with a light as bright as a thousand suns for what seemed like forever. Then, giving you the Reader’s Digest Condensed Version, he told me even though I was very young to have it, I had the beginning stages of Macular Degeneration. If you don’t know what that is, it is an incurable eye disease that would eventually leave me almost blind, no central vision at all. He told me about some vitamins I could take to help slow down or stop the process, and told me some foods to eat that would help and sent me on my way. As I often do in these life changing moments, I took to Facebook and posted a brief summary of what I just shared. A very good friend, who happens to be an OD, immediately commented, “Get a second opinion.” Shortly after that I was at an event with my sister, and she said, “You need to go see someone else about your eyes.” Ironically they both recommended the same person, Dr. Juan Astruc. I saw him on September 30^th, and after 2 hours of tests and scans, and staring into the light and dilated eyeballs, Dr. Astruc came in to tell me I did not have Macular Degeneration. WHEW! Big sigh of relief! I’m not going blind. Then he said, “The next thing I say is going to freak you out, but don’t let it freak you out. You have a tumor pressing on your optic nerve,” quickly adding, “it’s benign.” YAY!....I have…a tumor!?? Wait. What? He went on to explain that they were common enough that he had the neurosurgeon on speed dial, and that the surgery wouldn’t be invasive, they go in through your nose. I’d need to have an MRI, but it was all treatable and everything would be fine. Fast forward to last Monday, October 12th. I had an MRI and saw the neurosurgeon, Dr. K. Singh Sahni, the next day, and he showed me the films. The tumor is a pituitary tumor and is larger than they thought. It has affected almost all of my peripheral vision, and we have to move pretty quickly, as in less than 2 weeks from today, I will be recovering from brain surgery. Naively when Dr. Astruc told me that they would go in through my nose, I was thinking it might even be outpatient. Boy, were my eyes opened. 4 to 5 days in the hospital, the first night in ICU. I am trying to get used to the idea, and don't know if it has fully hit me yet, but I know all is well, and what is going to happen is going to happen. I'm in good hands. Readers use this as a cautionary tale. If I had not gotten a second opinion, I would be well on my way to going blind, and not because of Macular Degeneration, because the tumor would continue to grow until irreparable damage was done to my optic nerve. Listen to your body, and be your own advocate!