Monthly Archives: September 2014

I Can do This!

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pigeon 1Sometimes things in one’s life can be a bit overwhelming. The decision whether to get rid of the unwanted guest in my head by surgery or gamma knife has been consuming most of my thoughts.

Keith and I zipped down to Houston this week to talk to doctors at MD Anderson in their Acoustic Neuroma Center. Who knew? It’s a God thing remember? It did feel very odd being on the other side this time. My place there has always been as caregiver now I am the patient. Can’t say I like that very much. We met with some very nice and well respected doctors in this field. While none of them really told me anything I didn’t already know, I felt at ease with them and began to trust that I had come to the right place.

We did have to get out of our comfort zone though. We always stay at the Rotary House, which is just across the street from MD Anderson. We did not have enough preplanning time to make a reservation so rooms were available.  We picked the next thing we knew which was the extended stay hotel a few blocks away.  This was our home for 3 weeks when Keith first started treatment. The same place where we got our car broken into. The place where we met another couple from Ardmore whose husband was being treated. A place that allows you to bring your dogs with you. By the time we got there, it was after 8. When we were checking in, they informed us that they had given our queen bed away and we were given a room with two double beds. I could see the lines of concern forming between my husband’s brows as he said, “Why do I have a confirmation number for a queen bed, if you have given it away.” We were both too tired to argue so we made it work.  It actually felt plenty big because there were no dogs between us hogging the bed.  Sometimes our big king bed at home feels very small.

Our morning started bright and early as I had to check in at 7 a.m. for an 8 a.m. doctor’s appointment. Now I will tell you what the MD in MD Anderson stands for: Most of the Day. We experienced that over and over five years ago and we were starting our morning off the same way. Checked in at 7 a.m. and was told my appointment had been moved to 10 a.m.

After a quick breakfast in the cafeteria, we decided to go outside into their beautiful garden areas. It was a warm morning, flowers were blooming and the birds were out singing. We plopped down in the area where we always go to and up comes a pigeon and little scraggly bird with no tail. I never seem to have food at these times. Keith was prepared with a granola bar in his bag. The pigeon looked very healthy so I worked on feeding the little no-tailed bird. He got his fill and went on. Not the pigeon. Is it possible to fill them up? We decided to get a little creative and see if we could get him to eat out of our hands. Nope, not going to do it. Next we put food on the end of our shoes. Success. Then word spread and all of a sudden we had 6 or 7 pigeons. The one little pigeon did his best to shoo the others away, but alas, there were just too many. I am breaking up more of the granola bar when one of the pigeons fly’s up and gets on my hand! OMG! I am hand-feeding this pigeon. It was the greatest thing ever and what a way to start my day. Then Keith thought he would give it a try. Success. It was awesome. As we walked back across the street to head for my doctor’s appointment we see a sign that says, “Do not feed the birds.” We both agreed that there was no sign where we were sitting telling us that.  No rules broken.

Finally in the docs office and I start off with his “fellow”. This is a young man that I swear to you could have been my son-in-law Charles. He had different hair, but he was tall, skinny, sounded like Charles and had Charles’ eyes. It was like Charles was there. I found that very comforting. Then the surgeon came in and visited some more and answered more questions. The doc told me that if I were younger, his recommendation would be surgery. If I were 10 years older, his recommendation would be the gamma knife. Because I am the awesome age of 54. I can do either. So much for a recommendation.

So again, a big decision to make and I have to weigh the pros and cons of each.

  • Gamma Knife:
     Pro: It is outpatient, pretty much painless and I go on about my life the next day. I like the sound of that. Con: It doesn’t get rid of my tumor, just zaps it. I would also continue to lose my hearing in that ear as the tumor is still there mashing on my hearing nerve. I would have to have an MRI annually for the rest of my life to monitor it. There is no data out there beyond 15 years on its success rate of keeping it from growing back and growing back cancerous. YIKES.
  • Surgery Let’s start with the cons here: It’s brain surgery and they have to cut open my head. I will have some discomfort for 7-10 days with the incision. I may have some dizziness or balance problems for a few days. I would have to spend 3-5 days in the hospital and miss 4-6 weeks of work. Jeez. Pro: The tumor is removed and I don’t have to worry about it anymore. I may be able to salvage the remainder of my hearing in that ear and the ringing in my ear has a 50% chance of going away. I would REALLY love that.

It’s times like these when you just have to put your big girl panties on. While I am scared to death of the surgery and the days after, I am even more scared of the thought that when I’m 70, it could grow back and it could grow back cancerous. Do I really want to deal with brain cancer at 70? Maybe medical technology will have come a long way by then and it wouldn’t be any big deal. But do I really want to risk it. These are the thoughts that have just been churning away in my mind…. What to do, what to do. Keith and I have talked and talked and talked about it. He even told me he knew what he would do if it were him, but wouldn’t tell me so as not to influence my decision, because it is after all MY DECISION. Maybe I don’t want it to be my decision. I really would like someone to just say, “THIS is what you MUST do. Alas, that isn’t going to happen.

So I have decided surgery. I indeed have put my big girl panties on and tomorrow I’m emailing Houston with my decision. My husband, daughter and son are also going to have to their big boy britches and big girl panties on. It is going to be a stressful and draining experience for us all. I am hoping to be able to do it the first week of December.  That’s the plan Stan.  I just have to keep my chin up and my nerves at bay. For all of you out there that are praying for me, thank you and keep it up. This Episcopal gal accepts prayers from all religious denominations.

Yes, I can do this. Hey, I survived natural childbirth, I can do anything right. Oh and FYI: After I told Keith my decision, he said that is what he would do to.

An Unwelcome Visitor – In My Brain!

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MD AndersonIf there is one thing I have learned in my 50+ years of life is that life is full of ups and downs, blessings and curses, highs and lows, good and bad. It is truly a mixed bag. Some people seem to have more bad than good and some people never seem to have anything difficult happen to them. I think my life falls somewhere in the middle. There have been many times in my life that I have just floated along like a butterfly unaware of anything bad, nothing ever touching me. Then there have been times when I have been down in the muck and thought I would never get out. Those have all been learning experiences for me. They have made me who I am today and the highs and lows and blessings and challenges will continue to shape me, but they will not destroy me.  They serve to make me stronger.

Ten months after I married the man of my dreams, he is diagnosed with cancer. Together with God and MD Anderson, we kicked cancer’s but and just three short weeks ago MD Anderson officially graduated him and told us we didn’t have to come back. What an awesome feeling and an answered prayer for sure. For five years we continued to make that trek to Houston for his checkups. We jumped for joy and were giddy all the way home. Keith said to me, “We never have to come back here.” My response? “I know, unless I get sick.” Famous last words.

Last week I learned that I have an acoustic neuroma. A “what” you say? Basically it is a “benign” tumor in my brain that will have to be dealt with. It is not cancerous, it grows very slowly but it has to go. My first symptom, like millions of us out there, was Tinnitus. My left ear has been ringing for 9 months if not more. I have lost track because I spend all my time trying to ignore it. Then right as we are moving into the new house, I noticed that I am not hearing as well out of my left ear. It was like I was wearing an earplug. Things were kind of muffled. So off to the doctor I go, have an MRI and there it is, the unwelcome visitor in my brain. All 1.46 centimeters of it. Well crap. My local doctor sends me to a specialist in OKC who tells me what I have and what my options are. As he is describing the three possible surgical options of going into my brain, I could literally feel all the color drain from my face. He gave me the good, bad and ugly of a surgery. Then he gave me a little information about the “gamma knife” radiation option, which initially sounded great, but by the time he finished, wasn’t a perfect option either. At the end of his speech he asked if I had any questions. I can’t even speak at this point. Then just over my left shoulder comes a very strong voice, my hero husband who has LOTS of questions. Keith jumps right in and is asking questions right and left, some I am grasping and some I’m not. Then Keith asked the question, “what if we do nothing?” I perked up a bit for that one. Doctor said, “Eventually, she will die.” So much for doing nothing.   The doctor wanted to make sure that I understood that it was not a death sentence, it was fixable and it WAS NOT cancer. That did make me feel better. Obviously we have some research to do and some decisions to make.

In the car heading away I know I have to call my daughter who is waiting 350 miles away to hear what this doctor said. We talk about it, I tell her what the doctor said and that we didn’t have to do anything immediately. We would be exploring all options. She agreed, more research and exploring all options. Keith, trying to cheer me up and take my mind off it, takes me to test drive new cars. Great distraction!

We arrived home and I am trying to be brave. On the inside I need a good cry. On the outside, the tears aren’t coming. I admit it, I am scared. I have another conversation with my daughter who has spoken with her husband, Charles. My daughter is convinced that if I need surgery, we just need to pack up, come to Little Rock and have it done there. Not a bad idea.   We go to bed for the evening and I’m doing a little reading when my daughter calls again right at 10 p.m. Her message to me when I answer the phone, “Charles wants to talk to you.” Charles works in the medical field and with Neurosurgeons. I guess he has been kind of sharing my “issues” with them casually as I go through these tests. They have given him opinions and what not. So when Loni called him about what the doctor said about my “surgery” options, he called to make sure that I DID NOT let this ENT surgeon drill into my head.

The next morning I have my instructions from Charles: get another copy of my MRI disk and overnight it to him. He will ask his neurosurgeon to look at it and give us an unbiased opinion. We really liked that idea. So off to the hospital I go to get another copy of the disk. By the way, the little gal in medical records is not very friendly. She literally made me feel like I was imposing on her. Next off to the UPS Store to overnight it to Little Rock. By the way, the people at my UPS store, VERY friendly and VERY helpful.

So now it is Sunday morning and I am still thinking about my options. It’s hard to think about little else. My in-laws and brother in law were in from Texas and they did provide some distraction from my little tumor friend, but it was never very far from my mind. Then Keith and I wondered if MD Anderson would look at it. I’m thinking no since it’s not cancer. Then Keith replies, “Not cancer, but it is a brain tumor.” Good point. I went to their website and typed into the search: acoustic neuroma. OMG, they have an acoustic neuroma center and it’s part of the Head and Neck Center where Keith got treatment. About 30 minutes later Charles calls me. His neurosurgeon has looked at my disk. His response was if it were his wife, he would go the gamma-knife route. Then he said, “She needs to go to MD Anderson in Houston, Texas.” Feeling a bit like a God thing here. In fact, Dr. Thomas knows one of the head docs in the Acoustic Neuroma Center and he got the ball rolling to get me an appointment! Charles continued to follow up and by Wednesday, I had an official appointment for next week. Now I guess I can classify Charles as my hero son-in-law.

Yes, we are headed back to Houston, to the same place we never thought we would see again. To the place we know like the back of our hand. To the place that I entrusted the life of my husband and the place that did not disappoint. I am anxious to see what they suggest and how we will proceed.

I’ll keep you posted on the progress. Stay tuned.