Brain Tumors and Primary CNS Lymphoma
Brain tumors have changed my life in more ways than I could ever imagine. I will admit, not all the changes are bad. Cancer has taught me to stop sweating the small stuff. Life is only as bad as we perceive it to be.
My life was literally changed overnight by brain tumors. On July 10, 2013, I was out fishing for salmon and then hiking at the beautiful Mendenhall Glacier with my family and our new puppy. Life was “normal”; heck I considered my life to be perfect at that point. My husband and I had just bought our first home and I had received my master’s degree in May. We spent most of May on vacation and then spent June enjoying our new home and I became a full-time employee at Bartlett Hospital in Juneau, AK. Life was good. Then around 1 am on July 11, 2013 life changed.
I woke up with this weird sensation in my arm and as I sat up I had a throbbing headache. I woke my husband up and asked him to get me some water. As he was downstairs I realized I could not move the left side of my body. My heart was racing. I tried to stand up and I couldn’t. I fell to the ground like a rag doll. My husband returned to our room and he told me I was stuttering and the left side of my face was droopy. I was scared. My husband picked me up and carried me to the car and we raced to the hospital. When we arrived I was treated for a stroke. I was 28-years-old. How could I be having a stroke? I had multiple tests run and the doctors noticed something peculiar about my CT scans, so an MRI was done. There was no blood in my brain, but I was expressing many of the symptoms of a stroke. Turns out I had 3 brain tumors and massive swelling in my right parietal lobe. The largest tumor was 39mm, or about the size of a golf ball. My mind ran wild. How did I, a very healthy woman, have brain tumors? I just had a physical for the Coast Guard Reserves three weeks prior, with blood work, and everything showed me as healthy.
It was necessary for me to remain in the critical care unit at the hospital I was working at. I was angry and so anxious about what my future held. The hospital in Juneau is small. There is not a neurosurgeon there. I needed to go to Seattle to get care. I stabilized enough to fly on commercial air and did not have to be medi-vaced by helicopter. We stayed with family for a couple days and then I had a craniotomy on July 18, 2024, only a week after my non-vascular stroke. My neurosurgeon was Dr. Primrose at Virginia Mason Medical Center. I am grateful for him every day. The surgery was quick and as painless as brain surgery can be. He is a superhero to me and my family.
Within days I walking better and then within weeks I was walking without use of a cane. The week after my surgery I was diagnosed with a rare cancer called Primary Central Nervous System Lymphoma (PCNSL). I was matched with an oncologist that specializes in Lymphoma, Dr. Malpass. He is an amazing man and kept me well informed. I love him, and like my neurosurgeon, I am grateful for him daily. I started chemotherapy on July 31, 2013 to treat PCNSL. Within 3 weeks my life had changed from that one night I had a stroke. My son was 4 years old at the time and he was such a trooper. He understood that mommy has cancer and she is sick. When people are sick, some die but most are fine. Having a child through this whole experience made the experience “easier” if that is possible. I was not only fighting cancer for me, but I was fighting cancer for him and the future he has. I want to be part of his future.
After 8 rounds of high dose methotreaxate, which includes 8 weeks of being in the hospital for the treatment, and 4 rounds of rituxin I was told I was in remission On January 1, 2014. What a great way to start the new year, “cancer free.” My port was removed and after an unwanted 7 month “vacation” in Seattle my family and I were returning back to Juneau to finish unpacking our home and settling in. We arrived at the airport to a “Sea of Blue”. The Coast Guard unit my husband I were stationed at all showed up to welcome us back home. My doctors were amazed with how healthy I was during the chemotherapy process and believed my cancer was a “fluke.” The average person with PCNSL is a 65-year-old male.
On March 27, 2014 I had my first “check up” MRI. Once you have brain tumors MRI machines become your second home. You spend lots of time in them hoping and praying no new masses show up in your brain. Two days later my oncologist called and said “there is something we want to check out from your MRI.” Oh no. My heart sunk. Just like the day before my stroke, I felt fine. How can there be a foreign object growing in my brain? I am not sick. I did not go to Seattle for my appointments until April 14th. Two weeks later. During that two weeks though my health got progressively worse every day. I felt dizzy, almost like I had been drinking. I could not drive and needed to use a cane. I thought it was due to my stress and anxiety about seeing my oncologist. Turns out I was getting sicker because between the MRI I had on March 27 and the MRI I had on April 14 my tumor had grown from 28 mm to 49 mm. This time the tumor was growing in my left cerebellum. That week I was started on dexamethasone (steroids) and a chemotherapy called Alimta.
This chemo was so much easier than the last chemo I had since I did not have to go inpatient for this treatment. With the recurrence of my cancer I learned that the cancer was much more aggressive than originally thought. I am now in the process of going through a stem cell transplant. I am now receiving treatment at the Seattle Cancer Care Alliance, which partners with Fred Hutch Research Center. Fred Hutch is one of the top research facilities for stem cell research in the world. A stem cell transplant is now my only option to become healthy and be part of my son’s future.
My advice to anyone with brain tumors, or cancer in general, is don’t let your health issues consume you. You are more than your tumor/cancer. Tumors are not pleasant, but we, as humans, have the choice to be pleasant. You can wake up every day and be angry you have cancer or you can wake up and be grateful you woke up and are alive. Some people go to bed at night and don’t ever wake up. Life can change fast and as brain tumor survivors we need to change faster. Utilize all the resources you can. There are a lot of agencies out there that want to help people with cancer. I didn’t reach out at first because I am stubborn and told myself “I am fine, I don’t need help.” As treatment went on I realized cancer is not something I can beat on my own. I needed help. I used the American cancer society, reached out to the social workers at my hospital, and started searching for support groups. I am so grateful I am getting help from others. Remember, cancer is not something you need to take on by yourself. I believe cancer is very much a mental issue as a physical issue because as our bodies change when we have cancer, so do our minds and how we think. Don’t be embarrassed to tell someone you don’t feel right or express how stressed or depressed you are. Cancer is scary, but don’t let it consume you. Get help.