I started my first month of chemotherapy in November 2012. Luckily I started on November 13th and had some time to recover before Thanksgiving. My chemo schedule includes taking pills at night before bed for 5 days a month and then getting the remaining 25 days to recover before the next round. I will be doing chemo treatments for 12 months with 1-2 month check ups at UCLA for MRI’s and doctors visits.
On November 13th I had my MRI at UCLA and met with my chemo oncologist to discuss my treatment schedule. The MRI looked good and I had no tumor regrowth. The first day after taking the chemo drugs (Temodar) I didn’t notice a big difference. Going into the rest of the five days I began to get sick-mostly nauseous and weak. The side effects of Temodar besides feeling sick includes constipation. And all of the anti-nausea drugs also cause constipation. During my chemo round in November I tried to balance the anti-nausea drugs with a handful of laxatives (both prescription and over the counter). The balancing act between the two was not very successful. I eventually got through the week and began to take short trips out of the house starting 3 days after my last chemo dose.
My last day of chemo + radiation was Wednesday October 24th, 2012. It was a relief to finally put an end to my brain getting fried, literally. The lead door to the treatment room was a foot thick-I think I was on the wrong side. For the duration of my 6 weeks of radiation I went on and off the chemo because the side effects (especially nausea) were so intense. I was sick in bed most of the time, with an occasional break on the weekends when I wasn’t getting radiation. The radiation would heat up my head so much that I craved eating anything cold, especially frozen sorbets. Normally cold foods would give me “brain freeze”-but not when I was exposed to the radiation. As a result of the radiation I stop growing hair from the middle of my head all the way down. It looks like I have a “jar head” haircut with a perfect line all the way around. My ears were burned pretty badly after the radiation treatments and I had to apply lots of lotions to help it heal. My memory was also effected by the radiation. The side effects are supposed to last 6 months to a year.
At the completion of my treatment I received my souvenir radiation mask along with a certificate of completion signed by the doctor and his staff. This is the radiation mask that I got to wear when I was bolted to the table, 10 minutes a day for 6 weeks. The mask was so tight up against my face that I couldn’t move my mouth or chin.
Backyard BBQ September 2012
After waiting to get the new pathology of my tumor (for the 3rd time) I hit a few more roadblocks before finally starting my treatment. At first there was a delay in the UHC specialty pharmacy getting my chemo drugs ordered and shipped. Then, after we received the drugs, I couldn’t get my radiation appointment until a week later.
I finally started my chemo and radiation treatment on Monday, September 17, 2012. After being told by my radiation doctor and his nurse practioner that I wouldn’t notice any side effects from radiation until a few weeks into treatment and hearing that the chemo drugs usually take a few days to take effect I thought I would gradually get sick. Luckily for me I got very sick by day 2 and have stayed sick ever since. Because the first few days of chemo + radiation I was so miserable: dizzy, nauseous, couldn’t keep food down, etc., the chemo oncology department at UCLA decided to have me temporarily stop the chemo pills. I also increased my anti-nausea pills and took a strong steroid dose which is supposed to help with brain swelling. I have been totally off the chemo for more than a week and a half but I am still sick and according to the radiation clinic they didn’t think radiation would make me feel dizzy and nauseous. After doing my own research online I’ve found that people can get nauseous when they undergo radiation specifically to the brain.
After emailing the chemo oncologists after my 3rd day of treatment explaining how sick I was, one of the doctor’s told me that it wasn’t normal for me to get this sick so soon into treatment. She thought maybe I should get an MRI and some bloodwork to see if there was another problem. On my 4th day of treatment I got an MRI but according to my radiation doctor everything looked fine. And my bloodwork also came back normal.
I have completed 2 weeks of radiation and have 4 weeks to go. So far I have lost 10 pounds after starting treatment. On the weekends I get a break from the radiation and my nausea sometimes decreases slightly. I’m not sure when my chemo oncologist will want me to resume my chemo treatment but I’m meeting with him this week so I guess I’ll find out then.
Last Monday, August 27th, I met with my neuro oncologist and neuro surgeon. I also got an MRI. The MRI revealed that my tumor had not grown back, there was just scar tissue. Also we got feedback from the UCSF’s pathology report. I can’t remember the technical terms that they used, but pretty much it was still unclear what the tumor actually was. The neuro oncologist said that they may never really know what it was. Because of that, they want me to start chemo and radiation combined for 6 weeks (starting soon) and then I will take chemo 5 days on, 25 days off for about 1 year. They could not compare my situation to anyone elses-they said they couldn’t look me up in a textbook to know exactly how to treat me because I had a tumor like no one else (or atleast hasn’t been documented). Both of my doctors said that they would discuss my treatment plan at a board meeting tonight (Wednesday 8/29) at UCLA to make sure everyone is in agreement before I get started. The chemo that I will be taking is not as aggressive as they originally planned on me taking (when they thought I had the pineal blastoma). But I will probably still experience side effects of nausea, drowsiness, lack of appetite, and low white blood cell count (decreased immunity).
The outpouring of prayers and support from so many people over the past several weeks has been overwhelming. We have appreciated all of the acts of kindness and service that we have received. We know that the prayers, trips to the temple, and fasts by many different people have truly helped us.
Two days prior to my first craniotomy my wife and I felt sad, fearful, and uneasy. The day before the surgery we felt the most at peace, totally opposite from what we had felt the day before. It was as if someone was physically lifting us up from our sadness and fears and giving us incredible strength. We realized later on that two different wards had been fasting for us (and many other individuals) the day before and the day of the surgery. We have still continued to feel peace throughout this difficult time, but the strength and comfort we felt the day before and the day of the surgery was like no other.
It was a miracle in itself that my diagnosis and prognosis had changed between the first and second surgeries. It is very rare for a diagnosis to change from one type of cancer to another. We were grateful to learn about the possibility of my having years to live versus months.
The sequence of events leading up to both surgeries happened for a reason. If the first craniotomy was not aborted from the false diagnosis Robert could have sufferred more impairment from the surgery because of the brain route that was taken. Also it would have been impossible to completely retract the entire tumor based on the angle the doctor had entering the brain.
There was a delay in finding out about the new diagnosis based on the final pathology report, and a delay in getting the second craniotomy. After making preparations for the second craniotomy, I found out the day before the surgery that it was cancelled and postponed a week. Not being told the reason why, my wife and I were frustrated about the delay. Soon after we spoke to Dr. Yang who told us about his meeting with the chief neurosurgeon, Dr. Martin, to discuss my case. Dr. Martin had recommended accessing the tumor through the occipital lobe, which was a better angle-allowing for the entire tumor to be retracted. Because of Dr. Martin’s experience with occipital lobe craniotomies Dr. Yang asked him to perform the surgery. It was a blessing to have two top neurosurgeons performing the surgery and successfully taking out all the tumor that they could see.
Dr. Yang mentioned God’s hand in helping him throughout the surgery. He had an advantage going into my brain a second time because he had seen the tumor and new what he was dealing with. Also, the scar tissue from the first craniotomy provided a guide or pathway for the surgeons to follow, making the retraction much easier.
This whole experience has helped my wife and I become stronger. We try to enjoy as much time together as we can and not take it for granted. We have been reminded how short our time is in this life and how much we appreciate our knowledge and belief of eternal families.
Luckily for the second surgery I was able to show up the morning of instead of hanging out for days in the hospital prior to the surgery. I was told that the recovery time post surgery would be 3-5 days-it ended up being more like 11 days (and I got to spend my birthday there). The reason they kept me so long-and most of the time I was in the ICU-was because I had high fluid pressure in my brain causing intense headaches. The doctor’s weren’t sure if either my shunt was working properly, a ventricle was blocked, or if it was normal aftermath post surgery. After the pressure and headaches gradually lessened in severity over the next several days they decided to send me home. I still experience headaches but they are not as intense or frequent as they were before. Another side effect
My wife took this picture the day I was released from the hospital
of the surgery was double vision. Because they accessed the tumor through the occipital lobe we new there could be issues with my eyes (mostly temporary). The double vision lasted quite awhile, but it too gradually got better over time.