What a difference a(nother) year makes

Today marks what we in the brain tumor community (and yes, sadly there is a brain tumor community) call my second tumorversary or the two year anniversary of the day I found out that I have a brain tumor.  Two years ago I drove the three hours from home to school in Starkville, Mississippi. I began working in my office to prepare for my seminar later in the day.  After going upstairs to get articles I had printed and to see my professors and fellow students, I had a seizure in the stairwell on the third floor.  That night, two ambulance rides and two hospitals later, my husband and children were in the room with me when I was told that I have a brain tumor.

One year ago the hair that I had lost from radiation treatments had grown back in but was still very short.  I still had four months of chemotherapy left in my treatment.  I was spending two weeks of each month sick and in bed sleeping and two weeks going to work and taking classes.  Actually the class I was taking this time last year was an online health care marketing class so I was able to do some work during the weeks I was sick.  I was also able to use my contacts at UAB to interview the head of cancer services and the marketing director of cancer services at UAB.  They later interviewed me and I was featured as a patient story on the Comprehensive Cancer Center’s website.

In the last two years I have changed some things in my life and I have kept some things the same.  I now see some blessings that have come from my experience.  About two years ago Dr. Daugherty, a member of my church, published a book called Cancer. The Unexpected Gift.  The whole idea was offensive to me.  I was angry with God and scared and didn’t want to see anything positive about my situation.  I was afraid that I would not be able to see my children grow up or to be with my husband of only four years, who had already lost one wife to a brain tumor. 

Two years later I am still here.  I am feeling much stronger and more positive about my situation.  I will officially begin work all over again toward my doctorate on Monday.  I appreciate the time with my family more than ever before and try to make more time with them.  Two years ago I began writing things that I wanted to tell my children.  Now I have had the chance to say those things to them.  I don’t put off things that can be said and done now.

I am working every week now and am so thankful to be able to do that.  In fact, I currently have two part time jobs in addition to being in school.  Some days are stressful but so far I’ve not had any trouble remembering how lucky I am to be able to do everything I’m doing.  I’ve walked in two 5Ks and hope to run part of the next one in October.

In eleven days I will have my next three month MRI.  I’m a little nervous but don’t expect any problems since I’m feeling so well and don’t have any concerning symptoms.  I know that if the cancer does grow at some point in the future I will have my family, friends and especially my God to see me through whatever is in store.  I even want to get a copy of Dr. Daugherty’s book and read it now.

Exercising Faith

I am fortunate to have grown up in a family of Christians.  We attended church, not just regularly, but pretty much every time the doors were opened.  I accepted Jesus into my heart as a child and my beliefs have always been a part of my life.  I can remember a few times, and I’m sure that there were others, that I wondered about my faith.  Was it really personal?  Did I believe just because that’s what I’d been taught all my life? There were other times that God felt so close that I had no doubts but every so often fear and uncertainty would creep into my mind.

One of the blessings that comes in difficult times is that faith can be tested.  Tests of faith are like exercising the muscles of the body.  Testing makes faith grow stronger.

When I was confronted with the reality of having a brain tumor, it was all or nothing for my beliefs.  I would trust that Jesus’ promises would see me though or I could wallow in despair.  My research into survivability statistics was not good. 

I never thought that if my faith was strong enough I would miraculously be cured (though I do believe that God could choose to work that way if that were His will).  I exercised my faith in this situation by putting my future completely into God’s hands.  I prayed that I would like to be healed but that I accepted whatever plan that He had for my life. I knew that whether I lived or died and how disabled I might become was ultimately in God’s hands and that “we know in all things God works together for the good of those who love him, who have been called according to his purpose.” (Romans 8:28, NIV) The experiences that I needed to go through would ultimately be for the best and would be within God’s will. God’s big picture view is so much more than I can imagine so I must trust that He knows better than I what needs to happen.  I don’t mean that I trusted God and refused treatments.  I did have all of the conventional medical treatments that my neuro-oncologist and his team recommended.  I also began being more careful about what I was eating and taking better care of my health in general.

It was hard the first time I prayed that I would accept whatever God’s will was, even if it was not for healing, but after I took that step I felt a deep peace.  I had to take that step out and trust God with everything.  One of my favorite stories from the Bible is in Joshua 3 when the Israelites crossed the Jordan River.  The river did not stop flowing until the priests stepped out and their feet actually touched the rushing floodwaters.  Once the priests had stepped out in faith the rest of the Israelites were able to cross over on dry ground to the Promised Land.

Patient Story on UAB's Website

In Fall 2010, I took a class on Marketing for Heath Care Management. We had to interview someone who worked in health care marketing.  I decided that my brain tumor and all of those trips to Birmingham should be good for something so I set up an interview with the head of marketing for the cancer services division at UAB. Everyone was helpful and spent a lot of time answering all of my questions and I got a great grade on my paper. 

I got a call a couple of weeks later asking if they could interview me for a "patient story."  I was interviewed for this back in the fall and just found out that it was actually up on UAB's website today. It is about UAB's Comprehensive Cancer Center rather than specifically the Brain Tumor Center which I also highly recommend.  I hope that no one reading this has to go through what my family and I have had to experience over the past year and a half, but if you do, I would be happy to talk with you about what you are going through.

Click here to see my story on UAB's website

The New Normal

Since the very beginning of treatment for my brain tumor I have heard that after treatment life will settle back down and there will be a “new normal.” I have been told by the doctors that I will never feel the way I did before my seizure or before radiation and chemotherapy but that I will return to a good quality of life.  The question that I have been wondering about is how will I know when I’ve reached the point of the new normal? That is, at what point will I have improved the most that I am going to, both mentally and physically?

I completed radiation treatments in December 2009 and finished chemotherapy on January 1, 2011, so I’m off of the heavy duty stuff. Even so, I still take about eleven pills a day for seizures, headaches, tremors, vitamins, etc.  Part of the new normal includes taking a small pharmacy with me on overnight trips and keeping a list of all my meds in my purse at all times in case of an emergency.  I am feeling much better these days.  I still get fatigued and take a nap most afternoons. I’m working two part-time jobs though and taking a class.

I had a taste of the new normal last week that I had not anticipated.  On Friday, February 4, I had an episode of slight dizziness and double vision that lasted about 45 minutes.  Before I knew I had a brain tumor I probably would have said, “Hmm, that’s weird. I must be getting old.”  Instead, I emailed my neuro-oncologist Friday morning who emailed me back saying he wanted me to have an MRI, to start taking medication that would decrease edema on the brain and no driving until I saw him on Monday.

Thankfully, the MRI showed no change with the tumor and my vision issues would have been caused from an entirely different area of the brain.  They did make an appointment for me to see a neuro-opthomologist  at the Eye Foundation at UAB just to check things out from a neurological point of view. 

For now I guess the new normal involves that many little things will be treated as big deals until proven otherwise. It makes me tired just thinking about it.

I Resolve

I do not usually make New Year’s Resolutions but I do like to think about my goals for the year. Lately I have been thinking about what I want to accomplish, not only because of the new year but also because I have just completed treatment for my brain tumor. I’ll give a full medical status update in the next day or so. I am so much more fortunate than most brain tumor patients. I did have to stop work on my doctoral program but I have started to take graduate level classes at UNA again (one at a time). I have continued to work throughout treatments and am now consulting and also working part-time as a Clinical Assistant for a few classes each semester at UNA. I am hoping that in the next month or so my feelings of fatigue will level out and I will settle in to what they call the “new normal.”

One thing that I want to continue to do is to push myself both mentally and physically. My doctors have encouraged this. I will feel better and I am likely to have my intellectual abilities last longer, and to be able to compensate better, the more I use my brain for these types of activities. I am also planning for continuing my career, because I am trusting God that I will be around for many more years.

A second thing that I plan to strive for is for those times when fatigue or otherwise not feeling well causes me to need to take some time to just give myself a break. I want to remind myself that there is no need to feel guilty when I can’t manage to get everything done that I want to do all the time. I will need to take breaks and I give myself permission to do that without guilt.

I, of course, want to lose some weight and exercise more but there is absolutely no way that I’m sharing specific numbers with everyone! The main thing is that I want to spend lots of time with my family and loved ones this year and to end the year healthier and stronger than I am now.

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.