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.

And So, Here I Am Again.

I am relatively sure that if a survey were taken of several hundred people asking them to list 10 things they feel uncomfortable or embarrassed doing, I would bet that asking for help would appear somewhere on that list. No one wants to ask for help. It starts when we are little and learning to walk. We want to do it ourselves. Then in grade school we don't raise our hand to ask a question or say that we don't understand the material for fear of being judged or thought of as stupid. As we become adults we find it hard to ask for help when we are struggling because society has taught us that we must learn to stand on our own 2 feet. Asking for any kind of help is hard, but when money is the issue, it becomes unbearable! 

Almost exactly a year ago I found myself in a situation I never thought I would be in. I had been diagnosed with a brain tumor, technically a pituitary tumor, but it was in the middle of my brain, so brain surgery was required. I had lost ALL of my peripheral vision because the tumor was pressing on my optic nerves. I had no idea how I was going to afford the astronomical medical costs and loss of wages that having this surgery would cause. And before you ask, yes I do have insurance, but 30% of a $229,000 hospital bill, even when it is cut down to the "reasonable and customary" charge was something this single mom could not even fathom of how to come up with the money to pay. I am not an extravagant person. I never really have been, but when I became the single mother of 2 girls ages 2 and 5, frugal became my middle name. I have no savings as eating was more important to us. We rarely take vacations because we can't afford them. I am not saying all this to solicit a pat on the back. I want to share that I am not a frivolous person when it comes to money. See, there's that fear of being judged rearing it's ugly head. Last year my youngest daughter started a GoFundMe page to help with my medical expenses and to help with my loss of wages while I was recovering. I was humbled to say the least. Friends and strangers came to my aid. I was so grateful. Never in a million years would I have thought last year that I would be going through all this again, but I am. The Reader's Digest version is that there was some of the tumor left. When the neurosurgeon describes the tumor as "huge" you know it must have been a bear. I knew that eventually I might have to have that removed if it grew, but about a month ago I was devastated to learn that I had now developed a cyst in the same area, and it is already affecting my vision. This has changed everything. I was planning to wait so I could save up vacation and sick time to avoid loss of wages. Maybe I could save a little money or get a part time job to bank some to help with expenses, but now I am right back in the same boat and can't do either of those things because of the quick pace at which we have to move to get the tumor and cyst out. My surgery is scheduled for November 2nd. Added to that they are doing the procedure this time with an "inter-operative MRI" to make sure ALL of the tumor is gone before I come out of the operating room. I found out today that because of that I will need an additional MRI before I go into surgery to make sure that process runs smoothly. I am still trying to find the money to pay for the MRI done last summer that revealed the cyst. Just to give you an idea, each MRI costs me $750.00. The hospital bill will cost into the thousands, and because of recovery time, I may lose anywhere from $500.00 to $1000.00 in wages, not to mention that last year my "disability" income did not even get approved until well after I had returned to work. As we all know, bills don't wait. they are due when they are due. I'm not going to go on and on, and I am not trying to make this sound like a sob story. The long and short of it is that I am asking for help again. I wish I didn't have to, and if I win Publisher's Clearing House, I will make sure to let everyone know and give any GoFundMe money to charity, but until that happens, I will need money to hopefully get this thing in my brain to leave and STAY GONE this time. 

I know so many of you that read this blog helped me last time, and I will never be able to tell you how grateful I was and still am. Let me say thank you in advance to anyone who chooses to help now, and my greatest wish is that some day I will be in the financial position to pay it forward 1000 times over. The link to the page is above, but I will post it here again. Thank you. I love you all!

https://www.gofundme.com/b26dhnqu#