My Diagnosis – Part Two

After my initial diagnosis at my local hospital, I was sent home and told to wait for further instructions. For those few days that I was home, I was oblivious to what was going on. Still in shock and on new medications to try to stop the seizures, a lot of these memories are a blur.

It was a Friday and I was told that my care would be transferred to Hamilton, a city about an hour away from home. My instructions were to check in on Monday but on Sunday I was hit with another seizure. It was the first of many to come that Marcus witnessed. He panicked and didn’t know what to do. It was milder than the first and I was conscious throughout it. When the seizure temporarily  subsided, Marcus called the hospital in Hamilton and he was told to bring me in that night.

My parents drove as Marcus comforted me in the back seat. He spoke to me calmly and gently the whole way, reassuring me that I was okay and we were almost there. He was my rock, my lifeline which without, I don’t know what I would have done. I was in a constant mild seizure because I was panicking and didn’t know what to do, it was completely out of my hands. It was the longest car ride I’ve ever had.

When we finally got there, I was admitted and put in a room. I was scheduled to have a biopsy the following day. My sister Sonja stayed overnight with me in the cold room. She slept on a gurney with no sheets or blankets while Marcus went home to be with our son. She tried to distract herself by watching the movie Mama Mia but it only left her unable to listen to Abba again. She now associates their beautiful music with heartache because it brings her back to that awful night in the hospital.

On Monday, I was seen by many nurses, interns and doctors. Marcus returned to be with me. A young intern had looked at my MRI report and confidently told me that the tumour was a meningioma and could be removed. This type of tumour grows between the skull and the meninges, a protective cover that surrounds the brain. We were so relieved. My thoughts were, I would have surgery, cut the sucker out and get back to my life, but it wasn’t to be.

My neurosurgeon came in to introduce himself after the intern left and told us that the tumour was inoperable, the intern was wrong. How could he have been so wrong? He had misinterpreted the MRI and was over confident for his young age and inexperience. My neurosurgeon described the tumour as “crabgrass growing through a sponge” and I remember the words “quality of life”.

Later that day, I was taken into the operating room. There were so many people around me, all busy getting prepared. A kind nurse spoke to me as she put the gas over my mouth and nose. She asked me if I had any kids and I told her I had a four year old son. The damn broke and I began to cry, then everything went black. While I was asleep, they drilled through my skull, cut into my brain and removed small pieces of the tumour to determine its type and grade. It would be several agonizing weeks before we got the results back. In the meantime, I was put on several different anti seizure medications to try and get the seizures under control. I was also put on an anti inflammatory drug that gave me the appetite of a bear and the swollen cheeks of a chipmunk. Sometimes I felt like I didn’t recognize myself in the mirror.

When the results finally came in, I was told I had one inoperable, grade two, oligo-astrocytoma tumour. It measured 3.2 x 5 x 5, about the size of a plumb and located in my right frontal lobe. It was growing into the part of my brain that controls the motor skills on the left side of my body. Every time I had a seizure, my brain would feel scrambled and I would lose the ability to move my left foot for some time. As a result, I spent several months in physiotherapy re-learning how to walk properly.

When I heard the word “inoperable” from my neurosurgeon, the first words that came out of my mouth were, “I want to live!” Not once did I ask for a prognosis because I simply do not believe that a doctor knows or can tell me how much time I have left to live. Like Deepak Chopra says, “Believe the diagnosis, not the prognosis!” I strongly believe everybody  is different and I could heal myself, I WILL heal myself, I AM healing myself! And so began my journey to healing with a positive attitude and a strong will to live, for my son, my husband and for myself.

I met with a team of doctors and they all agreed that the best course of action for me would be chemotherapy. According to one of the doctors, it was an “exciting time” in the brain cancer world. Just a few years earlier, there were no drugs for brain tumours because it was very difficult to get medication to cross the blood brain barrier. Lucky me.

I was prescribed a drug called Temozolomide. It was an oral chemotherapy that I would take for five days, every month for a year, so toxic that I couldn’t touch it with my bare skin. The first pill was the hardest to swallow, still in disbelief that I was taking chemotherapy. It was an expensive drug that is not covered by OHIP, we had to pay for the first several months until we were covered by a different plan called Trillium. I found it very difficult to understand how my cancer treatment was not covered, but breast reductions and other non life threatening treatments were.
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I had monthly appointments with my doctor at the cancer centre and it never ceased to shock me how busy they were. So many people, young and old fighting the same battle I was. It was a whole different world, one that I never knew existed. Rooms filled with people just like me, waiting for their names to be called. I was shuffled from one waiting room to another, often spending hours there.

I was pretty lucky the first month of my treatment, not having any bad side effects other than fatigue and constipation. When I say “constipation”, I don’t mean having a hard time having a bowel movement. I mean that despite being on laxatives everyday during the treatment, I could not go at all. Now, I’m sharing this with you because I know that many people have gone through the same thing and I want to be honest with you. So, if you are sensitive or queezy, I recommend you skip the next paragraph.

It wasn’t until a few days after I stopped taking the drugs that I felt like I finally needed to move my bowels and I dreaded it. To tell you that my poop was hard is an understatement. I felt like I was passing something as big and as hard as a baseball. Often, my husband would hear me screaming from the bathroom because of the pain from ripping large, deep fissures in my butt (sorry mom, I don’t know how else to say it). The toilet bowl would be spattered with blood but I always healed….until the next month.

The second month was not so good. After I took the pills I felt like I was run over by a steamroller. I had a hard time getting out of bed and taking a shower was the most I could do in one day. Even that I had to do sitting down. I knew chemotherapy was going to be difficult, but I didn’t know if what I was feeling was normal.

A month later, I went back to my oncologist for the following months pills. They did blood work to make sure my body was ready and strong enough to take the next round. The results of the blood work showed that my platelet count was too low. A healthy body has a platelet count of between 150 and 400, I had 8. The doctors words to me were “Boy, we really knocked the stuffing out of you!” He asked me if I had any bruises on my body. I told him I didn’t but he asked me to lift up my pants so he could see my legs. I raised my pants and saw a bruise on my lower left leg. It was bigger than my hand and dark black, I gasped in surprise. He immediately sent me to the hospital next door for a platelet transfusion and to begin a round of intravenous antibiotics. This was difficult to swallow, I felt like I was being kicked when I was already down.

I just want to finish this blog with a big thank you to all you blood donors out there. What you do is so important and you really do save lives. You’re why I’m still here so, THANK YOU from the bottom of my heart! 🙂