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.

Some Days Are Diamonds. Some Days Are Stones.

It is hard to believe that 2 weeks ago I had brain surgery to remove a "huge" tumor. Thinking back on everything that has happened since September 30th, it seems I'm watching some Lifetime movie. I just thought I was getting older, and I was becoming, at 51, one of those people who doesn't like to drive at night. I just don't see as well. Then going to the eye doctor and being told I had the beginning stages of an incurable disease that would, eventually, leave me blind. Through urgings from others getting a second opinion and finding out that I do not have said disease, but I do have a brain tumor. And now, 2 weeks past surgery, and I am dealing with the aftermath. I have had my share of life changing events starting with infancy. Not even a month after I was born, I choked on some milk and stopped breathing. There were no infant CPR classes in 1963. My father did not know what to do. I do not know how long I was not breathing but finally after my father held me upside down, I began to breathe. When I was 11 years old I was in a car accident where the back window exploded in my face. I had over 100 stitches in my forehead, nose, eyelid and under my eye. Years of plastic surgery would follow. I lost a child before it was ever born. But this brain tumor thing. This has been the hardest to get used to. The hardest part for me is that it didn't seem that hard. The surgery, the recovery in the hospital, the trip home, they didn't seem to carry the weight that BRAIN SURGERY should get. Don't get me wrong. It's not easy. I haven't slept through the night since surgery. I wake up about every hour. I have headaches every morning. My nose feels like it will never be normal again. And then there's the hot flashes I have been having. You see, when all this started, I thought of nothing but the fact that this tumor, because of its placement, was messing with my vision, but what I didn't think about was the fact that it was also growing on my pituitary gland which controls all kinds of things in your body like temperature and metabolism and blood pressure. So now, I must see an Endocrinologist to see how out of whack my pituitary gland got over the last 10 years as this tumor took up residence between the 2 lobes of my brain and crowded out and squeezed the little pea sized gland that controls so much in my body. I have no idea what path this journey will take me on or where I'll end up, but I'm glad to be alive, and I'm learning to not beat myself up just because I haven't bounced right back to where I was. I'll take the diamonds when they come, but remember that navigating the stones is a big part of the journey.

The Art of Recuperating

It has been a week since I had my brain surgery, and today I am not feeling so hot. Nothing awful, just out of sorts. Just to let you know, I am not the type of person who is good at taking it easy, even when I am healthy. People talk about taking vacations to tropical islands and doing nothing but lying on the beach. Paradise, right? Not for me. I might like it for an hour, 2, maybe even half a day, but then I would be itching to go, do and see. So, as you can imagine, this period of recuperation is not easy for me. Add to that having to have little things done for me, and it gets even harder. I have to keep reminding myself I just had major surgery. This isn't like back or abdominal surgery where my body tells me just how far I can go. This is all internal. I might have a mild headache or seem a little tired, but mostly I feel normal, but I can't cough or sneeze or blow my nose. I can't bend over. Do you know how many things you do in everyday life that require you to bend over? Socks, shoes, and forget dropping something. Washing in the shower becomes a delicately choreographed maneuver. I'm trying very hard to follow doctor's rules, and I have 2 "nurses" at home who certainly remind me. I have no idea how you monitor progress. Before last week's removal, this tumor had taken residence for 10 years in my brain. How different will things be? Patience is not my strong suit. I just want things to be normal. I want to cook, and bake, and clean....well...maybe I could go without cleaning for a while. :) Time will tell. I'll see my surgeon in 2 days and see what he has to say. Until then, it's all a waiting game. Day by day. Day by day.