Terminate the TumorColin's Brain Cancer Blog

July 13th- I was referred to and saw a neurologist for numbness on my right side. The numbness started in my leg and over the course of two weeks moved up my right side and at this point was only to my neck. Besides the numbness, my exam was normal with no balance issues or weakness. The neurologist was skeptical if my insurance company would even cover a MRI since my symptoms were not that severe. But she pleaded my case, and the MRI was scheduled for the following week.

July 21st- MRI at Henrico Doctor’s Hospital 7:00am. After MRI, I returned to work and awaited a call from my neurologists. At this time I was not highly concerned because I was sure that it was just a pinched nerve or something not that detrimental. At around 10:30am I received a call from my neurologist with the result from my MRI. She was concerned that my scan showed a lesion on my brain in an area that would be affecting the sensation on my right side. She stated that she would be calling one of her colleagues who she felt might have a better idea at how to move forward. At this point, the news had left me unsettled and I left work shortly after and went home to relax until further instruction. I called Christine and let her know what was going on and also called my parents. After about an hour of being at home, I received a call from my neurologist who informed me that it would be best if I went to the ER since the testing that needed to be done would be extensive and it would be easier than running around town. I was told to pack for a couple of days. I called Christine who was very upset by the news and left work immediately to take me to the hospital. Back to Henrico Doctors’ Hospital. We waited in the ER for a couple of hours and saw the neurologist at the hospital who was able to show us the MRI images. The image showed a lesion (infection, tumor, etc.) on my left side thalamus, which is in the middle of my brain. The size of the lesion was compared to a grape or olive. After an examination by the doctor, I was taken to a room to stay for at least a couple of days for testing. My parents and brother came up that evening to join me and keep me company. Another neurologist came and did another examination and my only symptom still being my numbness. I had a CT scan done this night with and without contrast (the contrast is this radioactive looking Gatorade, but tastes like shit). This was pretty much all that happened that day and had to wait until the next day for them to review the CT scan.

July 22nd- Around mid-day I got a visit from the hematologist who now informed us that the CT scan suggested a tumor! He also noted that I had some spots on my lungs (used to smoke a lot but quit three years ago) but none were bigger than a couple of millimeters so the tumor did not migrate from my lungs. Besides the spots in my lungs, the rest of my body was clear. He also did an examination to check me for melanomas (these are common for people my age) and found nothing which meant that if it is a tumor, it did not come from anywhere else in my body. But alas, I was informed that a neurosurgeon would be coming by to talk to me later that night. Later that night, the neurosurgeon came by and informed my family and I that it was most likely a tumor, but more than likely a low grade tumor and probably benign based on my age and lack of symptoms other than the numbness. But all this is impossible to determine unless they do a biopsy on the tissue. Most of the time they would remove as much as they can when doing the biopsy but because it was in the center of my brain, they did not think it would be a good idea to try and remove it. So they planned to a needle biopsy the following week. I was released that evening.

July 24th- Another CT scan in the afternoon and a meeting with the neurosurgeon in the afternoon. My father came up from Danville to join me for the appointment. Not only is he an RN, but his brother was battling gastric cancer at the time, so he wanted to absorb as much information as he could. We spoke about the procedure and all the risks involved in sticking a needle into my brain. He reiterated that most likely it is a low grade benign tumor and treatment would depend. My biopsy was scheduled for July 29th. On my dad’s way home this evening he was informed that his brother had passed away at home; the funeral was on July 28th.

July 29th- Most of my family traveled from Danville to join me for the biopsy. The procedure was early in the morning and my brother drove me to the hospital that morning. I was not really worried about the procedure so much, but just anxious about the results. I had to leave my brother in the waiting room as they took me back to prep. Prep really just involved drugging me and strapping this huge frame to my head. And when I say strap, I mean they screwed this frame to my head. And they I remember waking up in recovery with a catheter, and it still creeps me out that they did that while I was asleep!

The neurosurgeon came in and told me everything went well and he would be coming by my room later that day to check on my status. I sat around at the hospital for most of that day with my family and the doctor did not come by until about 9 that night. He checked my neuro- response which is a little more numbness and weakness on my right side which could just be due to the biopsy. I also had another CT scan that day which showed that everything looked normal after the biopsy. The neurosurgeon told me I could go home in the morning and they would have the results of the biopsy in a few days. Christine and I were anxious since she was leaving on Monday morning to start her apartment hunting in New York and the last thing we wanted was troublesome news with her away and me in town by myself. But at this point we were anxious about results, but the doctor seemed optimistic that it would be a low-grade tumor most likely benign.

July 30th- I go home! I was told not to wash my hair for about a week, but had Christine shave my head that night. I must say reality hit me when I took off the bandage and saw the four staples that went across my head. This is serious! Thank you Christine for comforting me and Raymond for the joke about a ladder for bugs or something like that. But Christine was happy. She loves my hair short. And I think that I secretly deny liking it too.

July 31st- Diagnosis Day: I was playing Call of Duty: World at War because I was trying to work on my strength in my right hand. I was not playing that well, but it was the effort that was making me feel better. Then my neurosurgeon called while I was playing. He stated that they were still doing some additional tests but the initial pathology was back and he was afraid that it is a malignant grade 4 astrocytoma. He apologized and asked if I was alone, which I was, and let me know that he would call my father for me. I was standing in my apartment crying by myself. My father talked to the doctor while I explained to my mother that this was as serious as it gets. My mom got off the phone with me and called my aunt who also lives in Richmond and instructed her to come to my house. I talked to my father for awhile but really at this point could not be comforted. I know the prognosis. But now I have to tell Christine. I called her and let her know the news. She left work immediately to join me in our apartment. But how do you really tell the person you want to spend the rest of your life with that all of those plans and dreams could very well be done with? At this point I only think the worst. There is no hope. I had already given up. My aunt showed up before Christine which involved much more crying and hopelessness. I apologize that I do not remember any positive conversation that I might have had at this point with anyone. I felt lost. When Christine came home and my aunt left, we felt lost together. We made the mistake of looking at the internet immediately which only seemed to confirm what we already felt; defeated. Every site only seemed to confirm that even with treatment (chemotherapy, radiation, surgery if possible) this cancer was so aggressive that little of what we did would matter. It is the most aggressive form of its cancer also known as Glioblastoma Multiforme. When spent most of the afternoon crying and coming to realize that the life that we planned to one day have was not going to happen. Christine quickly decided that she was no longer moving to New York and would be staying here to go through whatever we had to go through. My brother Eric in Blacksburg also heard the news and drove to Richmond late that afternoon to lend his support. The first couple of days are a blur of emotions. I felt numb to everything and everyone who was not my family or Christine. I appreciated Pam and Tristan having us over that first night and then me trying to be normal at Brittany’s birthday the next day, but I felt so numb and angry towards everyone those first couple of days. I was angry that everyone else could have normal lives, and mine would be changed forever. I did not want to be around anyone but Christine. Before my brother left on Sunday he let me know that he would be moving to Richmond to help me go through my treatments and to make sure I would stay positive through all this. He instituted a “no sulking” rule. He said we knew what we were dealing with and now we needed to do something about it. It’s easier said than do, but it did help to boost my spirits a bit.

August 3rd- I had appointment to meet with my radiologist. My father came up the night before to join and be supportive. It’s also helpful to have a trained RN there to translate medical jargon and ask the right questions. So the radiologist explains what radiation therapy entails. I get a mask made? Crazy. Of course my father had to make a joke about my gigantic head. And then of course information about side effects. My hair is going to fall out where the radiation beams are focused, nausea, dry and irritated skin, brain swelling, etc. I am still shocked at everything at this point and just nod a lot.

I trust that the doctors will prescribe the best thing for me. I have another MRI for the next day scheduled (which was changed to Thursday since when I still had the staples in my head for my surgery) because they need an updated one so they can map out how they are going to focus the radiation. After this appointment I went with my dad to St. Mary’s Hospital where they have a brain tumor center. I spoke with Sherry Fox who runs the center and she was amazing. She gave my father and I so much information on my diagnosis and offered any and all assistance if I needed to get a second opinion or needed to find specific clinical trials. I walked out of her office feeling so much more ahead of the curb in regards to my diagnosis and the battle I had ahead and with a tote bag filled with information on cancer, finding doctors that work for you, a binder to organize all my files, etc. This was the first time I really felt like I could fight through this.

August 4th- I spent most of this day waiting for my afternoon appointment with my oncologist and studying up on my “enemy”. I managed to get through my first book on brain tumors in a day. Thanks to Sherry Fox, I had most of what I needed to prepare. I met my oncologist that afternoon. He was very abrasive and the regimen he gave me almost seemed “cookie cutter” in the way he explained it. “ We are going to start off with Radiation and Temador, and we are also going to put you on this clinical trial with a drug called Avastin”, he said. Clinical trials already? I thought we went to clinical once the initial treatment did not work. This guy must not think I have a chance. “ This cancer is aggressive. It is resilient. It is difficult to treat. But it is not hopeless”, he said. Are sure about that last part? Because hopeless is how I feel after our conversation. And they all keep saying the same thing. That I am 24 years old, fairly healthy and the tumor is relatively small. All these things are in my favor. It is hard to think that when the internet keeps telling me that the only hope at survival is having the tumor removed and then treated. My oncologist did not seem hopeful. He wrote me a prescription for a steroid to help with the brain-swelling which was making the numbness worse, and one for Xanax which would take the edge off all the emotions I was feeling after my oncologist appointment. He left and then I met the research nurse who explained my clinical trial and all the side effects of the all the medications I would be taking. I would be taking Temodar, radiation and Avastin all at the same time. Temodar is chemo and attacks newly dividing cells (cancer cells). It also makes the cells more sensitive to radiation. Radiation of course would use focused radiation beams to kill the cancerous cells in my brain. They now use multi-focal radiation which means they use several beams at low doses so they do not damage surrounding tissue. And the final drug is Avastin, which takes something out of my bloodstream that normally tells the cancer cells to make blood vessels creating a negative growing environment for the cancer itself. I signed a bunch of papers saying that I willingly enrolled and a waiver stating that they were not liable for any side effects/ medical needs resulting from the study, my treatment was scheduled to start on August 18th. I went home skeptical and with more feelings of defeat then before my appointment. Luckily, by this point, Christine had put away her own feelings of defeat and doubt to be as positive as she could be to make sure I was staying as optimistic as possible.

August 5th- I had an appointment with my neurosurgeon to get my staples out. I spoke with him about my concerns and revisited the idea of surgery. He still strongly advised against it. He said that where it is located he would only be able to get 50-60% which would not be worth the risk. But he told me that if we go through the initial phase of treatment and had my MRI and still felt strongly about surgery he would look at it again.

Will be continued shortly…

Tags: chemotherapy, diagnosis, Journal Entry, Radiation Therapy

This entry was posted on Thursday, September 3rd, 2009 at 10:42 pm and is filed under Colin's Entries, Colin's Journal. You can follow any comments to this entry through the RSS 2.0 feed. You can leave a comment, or trackback from your own site.