What a Long Strange Trip It's Been!

Well, it's about that time again. Time to update you on the status of the eviction of Mike Wasowski and his "Cysta." It has now been exactly 4 months since I had my second surgery to try to kick Mike Wasowski to the curb.
Quick Timeline of Events to this point: 
September 2015 - Can't see images in eye test. 1st Doc gives Dx of Macular Degeneration
                              Get second opinion. 2nd Doc discovers NO PERIPHERAL VISION thru Field                                  of Vision test. Suspects Pituitary Tumor affecting Optic Nerves. Referral to 
                              Neurosurgeon.
October 2015 -     MRI
                              Results show huge tumor taking up the space in the Brain called the Cella.                                        Immediate surgery is suggested.
                             I wait 2 weeks until my show closes
October 27, 2015 - Surgery to remove Tumor (Mike Wasowski)
December 31, 2015 - MRI
March 2016 -    Neurosurgeon breaks the news that there is some tumor left.
July 2016     -    MRI
September 2016 - Neurosurgeon tells me a cyst has developed where the tumor used to be. I will                                  need surgery AGAIN
                            2nd Field of Vision test shows cyst is already affecting vision
November 2, 2016 - 2nd surgery to remove leftover tumor and cyst. 
February 2017 - MRI

Which brings us to today. Well, there is good news and, well, not bad news, but not the "Yay! I'm rid of Mike forever!" news I'd hoped for. On February 20th I went to my wonderful Opthalmologist, Dr. Juan Astruc, the man responsible for diagnosing me correctly, and, not to be over dramatic, but for saving my eyesight and maybe my life. Another Field of Vision test, my third. My peripheral vision has returned 100% in both of my eyes. I am thrilled. He was too! You never really realize how much you use your peripheral vision until you lose it. Definitely encouraging news! Which brings me to my next Dr. Visit, Dr. Sahni, my neurosurgeon.
Most of us have lived somewhere for a long period of time, our childhood home or our first home with our spouse. It's hard to leave that to move on. Mike lived in my brain for at least 10 years. You might say he grew up there, and obviously he did not want to leave. Well, this time he's gone, but he left something behind for me to remember him. Truthfully, this memento was left from the very first surgery, but I had forgotten until I spoke with Dr. Sahni this past Tuesday. My daughter reminded me on the way home. Going back to post 1st surgery, there was a tiny bit of the tumor attached to a blood vessel. As you can imagine, that is a delicate situation. You don't just go cutting away next to something that could potentially cause a hemorrhage in your brain. After the 2nd surgery, I went on a prescription drug called Cabergoline. One of the uses for this drug is to suppress the growth of pituitary tumors: A.K.A. Mike Wasowski. Here's the not-so-great news: Mike isn't totally gone, but here's the good news: The memento he left behind hugging my blood vessel is shrinking thanks to my superhero, CABERGOLINE! Envision really buff guy in tights and a cape with a big "C" on his chest. 
So, where does this leave me in my saga with Mike Wasowski? We have not totally parted ways, and in June, I will have yet another MRI. If what's left behind is still shrinking, YAY! If not, or it's grown at all, we may have to go the radiation route, but I'm crossing that bridge when I come to it. For now I'm celebrating my restoration of vision and all the supportive friends and family I have on this wild ride!

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# 

Mike's "Cysta" is Already a Problem Tennant

Back in the middle of July I wrote an entry with an update on my tumor (Mike Wazowski). I know several of you have been following my progress through this whole tumor/brain surgery ordeal that started a little less than a year ago. Wow! That's hard to believe that it's been almost a year since the exisitence of Mike was first discovered. So much has happened in these last 10 months. When one is told that they have a tumor it strikes a chord. No matter what is said after that, you have this initial feeling of dread. It is probably because we've watched too many scenes in movies or on TV where the hero or heroine fights bravely to the death with a brain tumor, we instantly think CANCER. Mine was not cancer. It was never thought to be cancer, but knowing that, I almost took it too lightly at first. Even after everything was removed, (well, not everything) I felt fine, by my standards. I have my granfather's "shake it off" constitution, so I thought I'm feeling fine. It's all over, and even if there is something hanging around, I can live with it until it poses a threat. I had made all mylittle plans of waiting until May to have my surgery. Afterall that fits better with my schedule, and I can bank enough time at work to be able to take the month needed to recover at full salary instead of 2/3 or, worse, days with no salary at all. NEWSFLASH: Threat posed! Last week I saw Dr. Astruc, the eye specialist who first caught the problem, for a routine follow-up. Part of the follow-up was a field of vision test as I had had the previous 2 visits since Mike had mostly affected my peripheral vision. I was a little worried when I took the eye test, you know the one with the letters, and my right eye was acting the same way it had when all this mess started but not as bad. The last letter in the line was invisible, not the last 2. But, as we tend to do as humans, I rationalized. It's dark in here. Maybe I have something in my eye, etc., etc. Then I went to take the field of vision test, and we started the process of staring down the long tunnel and clicking the plastic piece in my hand every time I saw a flash of light. Back to the examining room to wait for Dr. Astruc. As he looked at the results compared with my results in May, I didn't hear what I wanted to hear. Left eye? PERFECT! Right eye? Another dark spot has appeared. Well, CRAP! He said that he thought the cyst was probably causing that, but he would send the report to Dr. Sahni, my neurosurgeon, and he would make the determination of how to proceed. I saw Dr. Astruc on a Wednesday, and Thursday morning I got a call from Dr. Sahni. To summarize: My plans to wait until May went out the window. In fact, when I told Dr. Sahni I wanted to wait until then, he chuckled and said, "No, you cannot wait until then." So as it stands now, I am shooting for the first week of November, almost exactly where I was a year ago. I'm not thrilled, but it is what it is. What else am I going to do? This time they will do what Dr. Sahni called an Inter-operative MRI. That means they will do the MRI while I am still under to make sure EVRYONE vacates! I can tell you one thing. Mike's not getting his security deposit back!

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.

Best Birthday Present EVER!!!!

Yesterday was my 52nd birthday. Yes, it was also Halloween.Growing up with a Halloween birthday and having a flair for the dramatic made every birthday party a dream. Of course they were always costume parties. As  I grew older, each year became a challenge as to what my costume would be. Consequently, as I grew older, and had children it became about the perfect costumes for them. To say we love Halloween in this house is an understatement. We start planning next year's costume almost as soon as the last trick-or-treater has left the house.  This year was no different. We started planning early and had a theme. Then something happened. Surgery was going to change my Halloween and birthday plans this year. I didn't get to dress up. I didn't get to go out. I couldn't even put fun make-up on because of the swelling in my lips and nose. You know what? It was still a great birthday! My youngest spent all morning decorating the house. I had a visit from one of my very best friends. Topping it all off, strawberry shortcake for my birthday.
Those are not the reasons this birthday is different than any other. At the risk of sounding corny, this year I got the best gift I have ever received. I got my sight back and maybe my life. Not a bad trade for not being able to dress up. I'll take it!

Mike Wazowski

Well, ladies and gents, it is 12:20 AM on the day of my surgery. I have eaten my last morsel and drunk my last sip of water. In 5 short hours I will be on my way to the hospital for brain surgery. As the witching hour approaches, it seems surreal. This morning around 8AM I will go to sleep, and when I wake up about 5 hours later, this tumor will be gone. There are so many things I wonder about. How will I feel? What will my vision be like? How much have I just gotten used to? Of course, the big one, how much pain will I feel? I will be honest. I am a tad bit apprehensive. The anticipation is always far worse than the actual event. But tonight as I was riding around taking care of last minute things, something wonderful was happening, My phone was blowing up with friends and family texting and posting to Facebook their loving thoughts and prayers. I went to an event on Sunday night for the Richmond Theatre Community. My night was filled with hugs and squeezes and kisses all wishing me well and surrounding me with love! How can things not go well today? 

You may be wondering about the title of this post. My tumor is pretty round, and it has a small dark spot in the center, an eye, if you will, so I have named it Mike Wazowski, after the character in "Monsters, Inc." Mikey, my friend, time to exit stage right, and forget about a sequel!

See you on the other side, my friends.  

Thank You is Not Enough!

If you read this blog, you know by now that I have a tumor sitting in the middle of my brain. All kinds of things run through your mind when someone tells you that you have a tumor. Of course, the first thought that springs to mind is Cancer. That is not what I am dealing with, and I am very relieved. However, it doesn’t mean that what I am dealing with is nothing either. When you go through something like this, you need someone to lean on, a rock. I have had that rock in my youngest daughter. She is only 19, but she has been there from the first diagnosis until now, and every step of the way she has provided me with just what I needed. Friday, she did something that touched me deeply. It is no secret to my friends or readers that I have struggled financially since I became a single mother in 1998. I truthfully had to start my life over from scratch. Just saying, that ain’t easy my friends. Imagine what I felt at the prospect of paying thousands to make sure that I would be able to have this tumor removed to regain my sight at the least and keep my life at the most. Once again, my rock, my champion, my hero swept in to save the day. This is what I read online Friday. 

Medical Funds for Mom's Brain Tumor

69

RICHMOND, VA MEDICAL

$6,870 of $20k

Raised by 69 people in 2 days

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Created October 23, 2015

Georgi Hicks

Hey everyone! My name is Georgi and I made this gofundme because, I need help. My mother just recently found out she has a brain tumor (pituitary gland tumor to be exact). We found out it is not cancerous but also found out that it is a lot bigger than we expected. When we discovered how large it was the doctor said every day she waits to get the surgery is another day she risks going blind. So, her surgery is scheduled for October 27th, this coming Tuesday. My mother is the stronest person I know. She has been through so much and has never put herself before anyone else. Even when she found out about this tumor, she pushed it back to finish the show she is currently in, because she didn't want people to lose income by having to end the run early.  I admire her strength, her confidence, her independence, her will, but most of all, her courage. She has always had to worry about money, ever since she became a single parent, started with nothing and had to raise two girls that were only two and five at the time. Even though we've always had money problems, she made it so that I never wanted for anything, and worked hard to make sure I could stay a child for as long as I could. Ever since the day my father left, she has not done one thing for herself. My mother is a hero, not my hero in particular, but A hero in general. And for once, this hero should be able to take off the cape and just worry about herself. This brain tumor is a big deal and she is being so positive about the whole thing, so I don't want her worrying about money, just this once, I want that worry to be absent from her mind. The money needed for the surgery, the three or four days in the ICU and the three weeks she'll be out of work is an overwhelming amount to us, and is money we don't have now, and won't have anytime soon. So, all of this to say, we need your help. Any donation helps! I am posting this because it is hard for her to see that she is so worthy of help and support, but i know she is, help me let her know how much she is. Thank you so much for taking the time to read all of this! So much love to all of you! Thank you

At the writing of this, the campaign has raised over $6000. To say I am humbled is an understatement. I am touched beyond belief at the love and support of my friends, family and strangers. Love is an amazing thing!

Entertaining Angels Unawares

In about a week from now, hopefully, I will be out of surgery and into recovery, perhaps even in my hospital room in the ICU. I am not nervous now. I know I am in good hands, and I trust my doctor. I can’t tell you how I’ll feel when I leave before dark next Tuesday morning to head to the hospital for the procedure. I have already had a major outpouring of support including some of you who read this blog. Medically, I know I will be fine. I have faith that all will go well. What I am worried about is finances, specifically the cost of all of this and what my insurance WON’T pay, and losing income as I stay home to recover. I had to go in to have all of my pre-op testing done this morning, and when HCA called to schedule, they asked me if I would like to take care of the $500.00 deposit they would require over the phone. I declined, knowing full well they would ask for it this morning, I was a little nervous. It’s embarrassing to tell people you don’t have money. I mean, it’s not like this is elective surgery. Have the tumor removed or go blind. Kind of a no-brainer, no pun intended. So today when I went in, I had 2 scenarios in my head. 1. I will offer them $50.00 and hope they take it or 2. I will cause a scene and tell them that if I walk out of here and drop dead because I have an aneurysm, it’s on them. Luckily, I did not have to employ either of these. I had a wonderful woman named Dee register me today. She asked the obligatory question, “Would you like to take care of the $500.00 deposit today?” I replied, “I don’t have it.” She never missed a beat, and said, “That’s all right. I do see that your surgery is in a week, they will require that it’s paid before they do the procedure.” She then handed me a business card and told me that if I thought the $500.00 would be a problem, I could call and make an arrangement. I instantly felt a peace about everything. She then proceeded to talk about the fact that she knew very few people who could sit down and write out a $500.00 check, thereby making me feel less embarrassed and more normal. Dee was my angel today. I firmly believe that I was called to her booth because God knew I needed her gentle spirit and demeanor today in my situation. I will call, and I will make arrangements, and because Dee guided me today, I will not have the added anxiety of money when I go to have brain surgery next week. So, thank you, Dee, and thank you, God, for sending an angel my way.