Sherry D. - Diagnosed with a GBM IV in 2005

Sherry D. - Diagnosed with a GBM IV in 2005

Sherry D

I was diagnosed with a Glioblastoma Multiforme on December 6, 2005 at age 27 after having a Seizure at work. I had been having horrible headaches for three years prior to the diagnosis. The headaches started when I finished college and started my profession as a Social Services Caseworker for the State of Alabama. The job was stressful and when I saw a doctor about my headaches, I was told they were migraines. The doctor gave me samples of magnesium. The headaches got more frequent and accompanied Nausea. There were times I got headaches in the middle of the night and got up feeling nauseated, my husband would find me asleep on the bathroom floor the next morning. There was one occasion I was talking with a co-worker and I even jokingly told her I thought I had a brain Tumor or something.

By June of 2005, my husband and I started trying to have another child and I attributed all my symptoms to coming off my birth control. A month later my entire left side went numb after driving all day and I thought it was due to a pinched nerve because it went away after about 15 minutes. That happened two more times during my sleep. Two days before I had the first seizure, my head hurt so badly, I had to leave in the middle of grocery shopping to go to the car while my husband finished the shopping. I told him that day I could not take it anymore and had to see a different doctor. On the day of diagnosis, I was standing in a co-workers office talking and then walked off to go to lunch. I felt my left hand draw up and my left side went numb, I collapsed in the hallway. An ambulance took me to the local hospital ER. They did a cat scan and found a large mass near my right Temporal Lobe. I was immediately transferred to a larger hospital and put in neuro-intensive care. I had one doctor telling me to do surgery and have the tumor removed. I had another telling me to leave it alone and enjoy the rest of the time I had left because surgery would likely get only 60% and the side effects would likely leave me unable to care for myself. My son was nine at the time and all I could think of was him growing up without a mother. I went ahead and had a biopsy and the doctors said it was a grade III anaplastic astrocytoma. I was discharged home four days later with instructions to see a radiation specialist.

This all took place at Christmas, so I sat on it for a couple of weeks until we could get through the holidays. My family thought I was depressed and I had given up. I was in a fog from all the steroid and seizure medications. I had calls and letters from everyone I knew about what I should do and who I should see. I was not a religious person but I got a letter from a friend who had just been through breast Cancer and she suggested I give it all to God to handle and that I would be directed on what to do. I prayed that night and gave it all to him and the answer was then clear to me. A foster parent that I had just completed a sibling adoption for had casually mentioned she knew someone who went to MD Anderson Cancer Center in Houston and she gave me the contact information. I had no idea about anything related to any kind of illness much less cancer. No one in my family was ever sick. I never took any medication other than OTC and birth control. Something about MDACC felt right though. I called MDACC and made a self -referral and they got me in on January 5, 2006 to see a Neuro-Oncologist and a Neurosurgeon.

My husband and I drove to Houston for that first appointment because I was afraid a flight would aggravate the tumor. We had to circumvent the lower Louisiana area because Hurricane Katrina had just hit a few months earlier. A good friend started a fund for me and my local community did fundraisers and took donations to assist with travel and non-covered medical expenses. We met with the doctors at MDACC and their diagnosis was worse. They diagnosed me with a grade 4 Glioblastoma Multiforme. Pretty much the worst you could get. Their recommendation was surgery followed by radiation and Chemotherapy. The plan was to put me under anesthesia, surgically remove most of the tumor, and then wake me up so the surgeon could talk to me for the duration of the surgery. They stated they felt they could get 100% of the tumor!

During one of the pre-surgery MRI’s, I asked the radiologist just how big the tumor was because no one had told me just what the tumor related to in size, they just said it was large. He told me it was relative to a slice of sandwich bread. It had been explained to me that the tumor was in such a place that it could have permanently damaged my speech and motor skills and was particularly difficult to get to because the nature of the tumor is to grow like fringe down into the brain, similar to sand in the cracks of the sidewalk.

My surgery took place on Friday January 13, 2006, but did not go according to plan. When they woke me up to continue the last of the surgery, I had a seizure so they had to put me back under anesthesia. The post-op MRI revealed that they got 80% of the tumor. I felt this was a huge success! I had some residual weakness on my left side. I was not able to open my hand at all, but it got a little stronger each day. I was released from the hospital a week later and went home to Alabama. I did physical therapy for my hand and it got better each day. I went back to Houston 2 weeks later for an MRI and to have my staples removed.

After surgery, my MDACC doctor recommended chemotherapy with Temodar every day for 30 days with radiation. I chose to do the radiation and chemotherapy treatment at home and return to Houston for the follow-up MRI’s.

When I returned home from my surgery I was still in a haze all this happened so fast and it was hard to feel anything. All I knew was that I did not want to die. The thought of my son being alone without a mother was fuel enough to keep me going. My husband had to take off from work to care for me. I could not drive due to the seizures, after surgery he had to help me bathe, dress and do all the housework and try to work when he could. I went back to work a month after my surgery. I found a co-worker had put a calendar on my office door and all my co-workers had signed up for a day to drive me to radiation treatments.

I was still very new to the world of cancer and had to muddle my way through building an army of physicians for all my special needs. No one told me you had to have so many separate doctors. I thought I could have one doctor to do everything. My MDACC Neuro-Oncologist could only monitor my drug protocol and needed assistance from an Oncologist at home to do my labs and any immediate needs. My Radiologist had to get me an Oncologist. Then my MDACC Neurosurgeon said he could no longer refill my seizure medications and find a doctor at home. My Oncologist had to get me a Neurologist. So at this point, I had a Neurosurgeon, a Neuro-Oncologist, a Radiologist an Oncologist, and a Neurologist. I had a great Radiologist. He was so great that my first oncologist could not measure up to him. The first oncologist made me feel sick. Up until then I did not feel sick until I met him. He had a way about him that made me feel contagious. My Radiologist again found me my current Oncologist who is wonderful.

I returned to MDACC after radiation and the MRI was clear, showing no new growth. They recommended I participate in a drug trial with Temodar, Celebrex, and Thalidomide and Accutane. I was randomly picked for just three of the drugs: Temodar, Celebrex, and Thalidomide. I would take the Temodar and Celebrex every day and then the Thalidomide 7 days on 7 days off. As time passed they adjusted the doses up or down. With all my medications combined, there were times I took 32 pills a day. I went back to MDACC for about the first two years every two months for follow-ups.

As I got more comfortable with my treatment, I moved my MRI’s back home but continued the chemotherapy drug trial in partnership with MDACC. I had a new symptom about that time- focal seizures. My left side would go completely numb if I got stressed or if I did not get enough sleep. I did not lose consciousness I just went numb. It was as if someone drew a line straight down the middle of my body and one side would tingle then become immobile, restricting a lot of my movement and sometimes my vision. I could feel them coming on so I could prepare. My seizure medication was increased. A few months later, the seizure meds hospitalized me with pancreatitis and had to be completely changed. It took forever to get the right medication to keep me from having focal seizures. As long as I took care of myself, I did not seem to have them.

By 2008, my white and red cell counts started dropping from the chemo. I had to have two bone marrow biopsies. I had to come off the drug trial and my seizure medication had to be changed 3 times due to the dropping counts. I was on chemo much longer than they had anticipated so my doctors felt it was time to take me off. It had been two and a half years at that point. It was scary to me to come off, I was afraid that the chemo was the only thing keeping the tumor from growing back. I also had to have many blood and platelet transfusions, it took about 6 months to get my blood stable- not healthy but stable.

Currently, I am close to 4 years out. My blood is stable but not healthy and I have MRI’s every three months. I have had no reoccurrence to date. I still have weakness on my left side, but it is not a problem. I still have a little baldness on my right side from radiation, but I can do a great comb-over. The chemo has put me in menopause, so no chance of another child. I will be on seizure medication for the rest of my life. Out of all of this, the seizures scare me the most. I have to say that although this is by far the worst thing that has ever happened to me, it was not as bad as I thought it was going to be. I never accepted no. Don’t ever let a doctor take your hope away. I was told I had about 9 months to live and to go home and enjoy the rest of my time with my son. That doctor was wrong. He offered me no hope. There are always other doctors. There is always hope.

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