Michael

There are certain people who have impacted my life in special ways since I began my brain tumor journey. Michael is one of those people that I met early on. He, his mother and father were living at the Joe Lee Griffin Hope Lodge in Birmingham when I was there from late October through early December 2009.

Michael had been diagnosed with glioblastoma multifome (GBM) nine and a half years earlier. I knew from research about my tumor that his diagnosis most often comes with a life expectancy of a year or less. It is almost unheard of that someone would live as long as Michael had. I have since made contact with a few people online but I have never personally met anyone who has lived as long with this diagnosis. This is significant to me because my tumor (an astrocytoma) is a grade 2 glioma and Michael’s tumor was a grade 4 glioma. The difference between grade 2 and grade 4 is the aggressiveness of the tumor growth. Left unchecked, my tumor would be expected to eventually change to a more aggressive type.

Michael was easy to notice at Hope Lodge. He wasn’t the only person in a wheelchair but he also had large bald patches in several areas over his head and was paralyzed on one side of his body. His speech was usually limited to yes and no responses because he had trouble searching for the correct words to say. Physically Michael was not in good shape when I met him but mentally he was still stronger than many people knew. You just had to take the time to talk with him in ways that allowed him to respond with a “yes” or “no.”Michael’s mother mothered us all. She sat and talked with me about parenting, and priorities, and about how plans change when things happen, and about how God takes care of us through it all. Michael’s dad tried to sell tickets to the elevator and played tricks on people and kept everyone laughing.

My first week at Hope Lodge I was in good spirits. I was settling in and was not feeling any effects yet from the daily chemo or radiation treatments. We had a group room on the first floor where we ate our meals and visited with each other. I was talking to Michael and his parents about what they had been through. We talked about the importance of a positive attitude. I made some comment along the lines of that while that I don’t believe that positive thinking cures cancer, I sure don’t think dwelling on the negative does me or my family any good, so I choose to believe in the most positive outcomes. Michael, who had been sitting quietly, suddenly thrust his good arm into the air in a fist and yelled, “Yeah!” I think that’s the first word I ever hear him say and it has stayed with me ever since.

You Never Know

Right after my brain tumor was discovered I was put on steroids to decrease swelling in my brain. I was on them for about three months. One of the common side effects of this type of steroid is mood swings.  At doctor appointments they would ask if I’d been experiencing mood swings and I’d say, “No, not too much,” then Tony would raise his eyebrows and smile a little. Hmm, he’s very diplomatic.

On, Wednesday, October 14, 2009, Tony and I went to Birmingham to get the results from my biopsy that was done a week before. I still had pain from where the hole was drilled through my skull and from where the four screws from the halo device had been screwed into my head for the surgery. We found out about the type of tumor I have and about the size of it. A neurosurgeon was there who explained that the tumor was inoperable. Options were explained to us and we decided to go ahead with radiation and chemotherapy beginning the following week. We went to another building for a CT scan and had a mask made that I wore every day during radiation so that my head would be in exactly the same position each time. It was a long, physically and emotionally draining day.

By the time we made it back to Florence it was late in the evening but we needed a few things from Wal-Mart. After we got the things we needed we got in line to check out. There were not many people there but there was one man in front of us. He just had a few items. He took the items out of his cart, put them on the counter, walked around his cart, paid for his items and then walked away, leaving his cart right in front of the counter. I did not think twice. I took my cart and shoved his cart just hard enough for it to bump into him and said, “How rude!” He just gave me a look and left the store.

I’ve thought about this incident a lot since then. Every now and then I feel a tiny bit guilty (though not often, I admit). Mostly what I think about is that we have no idea what the people around us are going through at any given time.  That man had no idea what I was going through. The cashier who isn’t friendly might be going through a divorce. People all around us are finding out that they have cancer, that their children have learning disabilities, that parents have Alzheimer’s, that they have lost jobs. I have never been known as a patient person and I really have to struggle with that now especially on days that I don’t feel well. That’s why I try to remind myself of that day in Wal-Mart. That man didn’t know what I was feeling but I also have no idea what problems he might have in his life.

Tumorversary

September 29, 2010 was the first anniversary of the day I found out that I have a brain tumor. A lot of people have had questions about the tumor, how I found out about it, how I am feeling, what the treatments are and things like this. Some friends have hesitated to ask since they are not sure if I want to share or not. By the way, I don’t mind sharing at all and sometime soon I hope to write about raising awareness of brain tumors. In the interest of answering some questions, I will share some of the story of the last year of my life.

In August and September of last year I commuted 2 or 3 days each week to Starkville, Mississippi to work on my Ph.D. in management at Mississippi State. On Tuesday, September 29, I had been at school for about an hour and was walking from the M&IS offices on the 3^rd floor back to my office on the 2^nd floor when I suddenly felt more dizzy then I had ever felt in my life. I was in a stairwell but was thankfully unable to get to the top of the stairs. I tried to open the door to go back into the hallway but was unable to grasp the door handle. At this point I was so dizzy that I decided to sit down and put my head between my knees. After a few moments I lay over on my side and I felt my head begin to jerk. I had the thought that, “I think I’m having a seizure,” and then I lost consciousness.

I think it was only a few minutes later, Nadine, the departmental secretary opened the door to the stairwell. I was on the floor behind the door and two of my fingers were pinched between the door and the floor. I still have very little feeling in the tip of my ring finger on my left hand because of nerve damage from this. The pain from my fingers being crushed roused me enough to be aware that someone was there and for me to say, “I need help.” I heard someone say, “Oh my gosh!” and I lost consciousness again.

The next thing that I was aware of was being loaded into an ambulance and I was flailing and fighting someone who was yelling at me to calm down and stop fighting. I was panicked and not really aware of what I was doing or why but I couldn’t stop. Apparently, I pulled out a couple of IVs. By the time we arrived in the ER at the hospital in Starkville I was calmer and more aware. Shannan and D’Lisa, two of my good friends from school stayed with me in the emergency room. They contacted my husband, Tony, who was at home with my 10 year old son who had stayed home from school sick that day. Tony checked my 15 year old daughter out of school and the 3 of them headed for Starkville.

At the hospital in Starkville they performed a CT scan then almost immediately loaded me into another ambulance and sent me to Tupelo. They explained that there was something on the CT scan and the nearest neurologist was in Tupelo. An MRI in Tupelo revealed a tumor that I was informed about that evening.

I chose to go to the brain tumor center at UAB and had a stereotactic biopsy (needle biopsy) on October 7. The results of that were that I have a grade 2 astrocytoma. It is a large tumor, measuring roughly 7cm x 5cm x 4 cm, and is in the right parietal and occipital lobes. It is considered inoperable because it would very severely impact the quality of my life (movement, vision and speech). On October 22, I began radiation treatments with concurrent chemotherapy. I lived in Birmingham at Hope Lodge for 6 weeks during the week and came home to Florence on the weekends. I had radiation 5 days a week for 6 weeks and oral chemotherapy every day. I finished those treatments in early December. In January, I started a regimen of oral chemotherapy where I take the chemo at home for five days each month.  I will finish my 12^th and final round of chemo in January 2011. This chemo does make me feel sick but it does not cause hair loss. The radiation did make my hair fall out but it is coming back in nicely. In fact it is quite thick, darker and curly now!

In between rounds of chemo, I feel good. I get tired more quickly than before but I have started working again. I’m working part-time for UNA and am also doing management consulting. This fall I’m even taking a class. I’m going to sleep about 9 pm, but it feels really good to do something that feels normal.

This is a longer posting than I plan to be making in general but I knew that there were questions to be answered. I don’t mind sharing information, especially if it can help others in some way, and I have had a year to research, so if there is something brain tumor related that I can help with, please let me know!

The little engine that could that could had to try first

I've enjoyed reading the blogs of several of my friends and wished that I had a way with words that would make other people want to read about my experiences and thoughts. Most of my writing experience is in business and academic writing which tends to be fairly formulaic and would be boring in a blog. For that reason I had told myself and others that I did not have the skills needed to write a blog.
Everyone needs a friend who will say it like it is. My friend Andi said to me, "Well, have you tried?" Ouch.
So begins my foray into blogging. I expect to write about all sorts of things, brain tumors, autism, teenagers and whatever else happens to be going on in my life at the time.
Go ahead and give me comments. I'm more comfortable with two way conversations anyway!