I completed my 12th and final round of chemo last September. Two months have passed and I am still feeling very lethargic each day. I feel like some strength and energy has come back though. It has been nice not having to deal with the whole process of ordering and taking chemo drugs and all of the other meds to counter balance the side effects. Despite my feeling tired all day every day, my family and I carry on with the usual daily routines and responsibilities that we have along with the occasional fun activities on the weekends. I have continued to work closer to my former full time hours.
Some of the activities that we have enjoyed in the last couple months have included taking Ian to Disneyland for the first time and participating in another brain tumor 5k at the Exposition Park in L.A. After going to 2 brain tumor association 5K’s in the past 6 months I am really looking forward to a local 5K in Camarillo that I am helping to put on- to raise money for brain cancer research create more awareness. With the assistance of the Kiwanis club, we will be having the 5K in Camarillo on April 2nd 2014.
My last visit to the chemo oncologist was in October. I had another MRI and the results have remained the same (no tumor growth). My doctor informed me that I would continue to get MRI’s done every other month for a couple years, then once every 3 months, then after 5 years once every 6 months, etc… We have appreciated everyone’s continued kind words of encouragement, prayers, and support as I have been beginning my road to recovery.
Alot has happened during the last 5 chemo treatments (May through August). I am about to start my twelth and final round of chemotherapy next week. My lethargy has progressively gotten worse over the course of treatment. Also my lack of appetite has still been an issue. Still, at each doctor’s visit the MRI results have not changed-the brain scan looks the same showing what the doctor suspects as scar tissue (although he says there is always the possibility that it is remaining tumor). My doctor said that it will probably be 2 months post treatment when I will notice a difference in my energy level, but it will still take much time to get back to feeling normal.
Despite my symptoms I still have gotten some physical activity including some short bike rides and running two 5K’s. One of the 5K’s was for the American Brain Tumor Association which I ran with my mom, wife and son at the L.A. Arboretum. I have been coordinating with the Camarillo Kiwanis Club in putting on a 5K in Camarillo to support Brain Tumor research. Luckily I have had a lot of contacts and support in making this possible at the end of spring 2014.
After a full year of being off work I started back at AppleOne in June. Luckily my employer has been flexible in allowing me to have a shortened work day (because of intense fatigue in the afternoon) and working from home during my chemo and recovery week. When my wife had to return back to work in August after her summer break we had to find a school/day care for our son. Luckily we found a nice Montessori which is down the street from my work.
During the summer we had many family and friends visit us from out of town. We also made a couple trips down to San Diego to visit with my grandmother (10 days before she passed away) and to go to her funeral services a month later during the weekend of what would have been her 91st birthday.
My 6th round of Chemo started on April 1, 2013. I noticed that I had more energy during my last treatment. After 2 months of not puking, I ended up getting sick a couple days after my week of chemo. One event that I went to with my family last month was the local Scandinavian Festival. It was fun watching my son find his way through the bounce house maze and play croquet. It was a hot day but we still enjoyed eating Swedish meatballs and Aebleskivers and checking out the booths.
I started my 5th round of chemo on March 4, 2013. That day I spent at UCLA doing all my tests and meeting with my chemo oncologist. The MRI showed that there was no tumor growth. During March my nausea remained under control. Besides being very tired and having no energy other negative symptoms that I’ve experienced in previous months have lessened quite a bit. Half way through the month we celebrated my son’s 2nd birthday and had a fun party. My wife’s birthday was a day apart from my son’s. At the end of March my wife had her spring break and we enjoyed going to San Diego for a few days to celebrate Easter and spend time with family.
My energy level during the month of February has been better than in previous months. I am still more tired during my week of chemo, but the side effects have been somewhat milder. The Tuesday after my week of chemo I did experience vomiting/dry heaving. I was able to help outside in the yard during the church youth service project, which I have never been able to do before. Since I’ve had my surgeries last summer, we’ve had lots of support from church members it is a real unique sense of community when people come together to help. We’ve had a great turn out of church youth and adult leaders on a few different occasions doing yardwork on Saturday mornings. We’ve also been blessed with people bringing us meals during the weeks of my chemo, and people volunteering to watch ian. Just this past weekend (my last weekend before my 6th chemo treatment) I went on a bike ride for the first time since before I had my surgeries-9 months. It was a short, casual bike ride on flat ground but it was a big deal that I was able to do it.
I began my 3rd round of chemo on January 7, 2013. Compared to my chemo treatment in December, I wasn’t as sick. I was able to hold down more food, not feel quite as nauseous and had a little more energy than I did in December. I still had low energy and felt like lying down most of my week of chemo and most of the week after the treatment. I went to UCLA on January 7th and got another MRI. Still everything looks good and there is no tumor regrowth. I was told by my chemo oncologist that I can come back every 8 weeks instead of 4 weeks to get an MRI and get checked out. Luckily I got to celebrate the holidays during my off weeks and spend time with family and friends.
My second round of chemo began on Monday December 10th, 2012. I had another MRI which looked good-still no tumor regrowth. Looking back on my experience during my second treatment I realized that I might have had the stomach flu at the same time. My nausea and vomiting was so much worse the second month and even began the day before I started my first dose of chemo. I was puking so much that I contemplated going to the ER to get some fluids back in me since I couldn’t even keep down water. Eventually about 3 or 4 days after I stopped taking the chemo I was able to start holding more food down. And about a full week after chemo I was finally able to get up and move around some-and be able to enjoy Christmas.
From my experience during the first 2 months of chemo I’ve noticed that my energy level is very low. Of course the week and a half of laying around, barely eating, and throwing up would cause low energy but the chemo drugs make it all worse. It feels like I’m winded when I get up a few feet to go to the bathroom and walk back to the couch. I’ve dropped about 25 pounds since the summer when all my brain surgeries and treatments started. Now I am considered underweight.