“My Voice” by Heidi Saum

Heidi Saum - 'Survivor'

My story of survival begins on March 31, 2001. After suffering a seizure I was rushed to Arrowhead Regional Medical Center where I was given the diagnosis: inoperable brain tumor in my left frontal lobe. Scared beyond belief, soon after hearing those words I asked the male nurse if I was going to die. When he replied with the words, “I don’t know”, my heart sank and thus began an 11 year fight. I immediately thought and was told later by doctors that I didn’t have long to live. I was 20 years old and dying an early death.

Depression struck, but the funny thing is that for the first time in my short life I really wanted to live. I had had a long struggle with severe suicidal depression as an adolescent and young adult, but I was not going to let cancer kill me. I had overcome so much and I was determined from the start that I would overcome this too. I knew I had to be stronger than the cancer.

After being diagnosed my symptoms began to get progressively worse and I was spiraling out of control. The frontal lobe is responsible for a number of higher mental functions including the ability to recognize future consequences resulting from current actions, to choose between good and bad actions (or better and best), override and suppress unacceptable social responses, and determine similarities and differences between things or events among other things. I was experiencing grand mal seizures as well as focal seizures regularly and severe headaches as a result of my brain tumor. Fortunately, today and for the past 5 years I have had a team of doctors who understand how the brain functions and I am on all of the medication I need to be on to control these specific symptoms; thus, I am very high functioning for a person with a frontal lobe tumor. However, without the medication I would be susceptible to a range of personality and behavior deficits as well as frequent seizures.

As a result of the worsening symptoms, I was scheduled for surgery six months after my diagnosis. Scheduled for October 18, 2001, the surgery lasted eight hours and was only partially successful. Apparently my tumor has what they call fingers, which are attached to healthy brain tissue and trying to remove them with surgery could be more detrimental than the symptoms they cause. Immediately after the surgery, I woke up (still in the operating room) and thanked the surgeons! I sat up on the gurney and waved high to my friends and family as I was rolled passed the waiting room windows on my way to recovery and the ICU. Just twelve hours after surgery I was walking around the hospital and two days later I was released.

Following my surgery, I received daily radiation therapy for a period of 30 days. Unfortunately, the treatment was not successful. The tumor did not shrink. I did, however, become very fatigued and lose my hair as a result of the treatment.

I can recall being very angry as a result of having endured two unsuccessful treatments. In fact, angry is a nice way of saying it. In actuality I was pissed and believed at this point I was doomed. Another obstacle I faced at this time was the fact that I was not fortunate enough to have health insurance. I believed then as I do today that had I had health insurance I would have received a higher level of care as after the surgery and radiation I was left with no hope, no more options, and hundreds of thousands of dollars in debt. I was not given chemotherapy as an option and even worse, I was not scheduled for periodical brain scans so for the next five years I lived in fear, trying every homeopathic treatment I could find.

In January of 2006, however, I got health insurance through my partner at the time and was scheduled for an MRI and a visit to a neurologist. My MRI showed growth; my tumor had crossed over into the right hemisphere and began to invade more healthy tissue. My symptoms had become unmanageable at this point as well. The neurologist suggested that I ought to see a neuro-oncologist in Los Angeles and begin chemotherapy immediately so this is what I did.

Upon visiting the neuro-oncologist I was told I would begin chemotherapy. I was to take an oral form a chemotherapy called Temodar for a period of one year. The schedule would be 5 days on and 23 days off. I was working as a food server at the time, but after my first chemo I realized I would not be able to continue working. The side effects were almost unbearable. They included among others, constant vomiting and dry heaving, and severe physical pain and fatigue. I went on permanent disability (which I am still on today, although I hope and believe that someday I will be well enough to work a steady job again). After my first year of chemo, the tumor was still as present as it had been before I began treatment so I began a second year. However, during this second year the side effects began to proliferate and I became house-ridden and very very sick and fragile. I was hospitalized at least once a week and sometimes for weeks at a time. I lost ninety pounds and was literally dying; not as a result of my cancer, but as a result of the side effects of chemo. I made the choice to stop chemo after one night of unbearable pain and a visit to the emergency room. I will never forget that night. I was screaming in pain. Even the morphine they were giving me once I arrived at the hospital was not helping.

Since I made that huge choice I have been in better physical and mental health than ever. Although I still have stage 3 brain cancer. I am happier and healthier than I could have ever imagined. I AM A SURVIVOR. I have survived childhood sexual, physical, and mental abuse, rape, suicidal depression as a teenager and young adult, and cancer. I am grateful for each of these things, especially the cancer, because they have made me who I am today. I see the world in a different light than the average person. Because I am alive and have been so close to death I am grateful for every experience, big and small. I can’t emphasize enough how happy I am just to be alive after so much struggle and not just to be alive, but to be thriving. I recently experienced the best day of my life thus far. I graduated with my Master’s degree in Sociology. (After being diagnosed in 2001 I continued my education. The only point at which I was not enrolled in school was during the two years I was on chemotherapy).

To me, being a survivor means many things. Most importantly, however, it means that I am empowered. Most of my life, my power has been taken away from me and today I have that power back and I am in charge of my life. To me, that is priceless.