Stop Brain Cancer

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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.

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.

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).

• I was told on Monday of this week by the neuro oncology team at UCLA that the pathologists didn’t know what kind of tumor that I had. The neurosurgeon’s told us that I had a pineal blastoma the day of my 2nd surgery. Now a month later they don’t know what it is. In the meantime I am waiting to start treatment (radiation) and can’t do anything until my oncologists give the green light and my tumor type is determined. My tumor is being shipped up to UCSF to see if they’re pathologists can figure it out. Apparently the tumor tested positive & negative to different cancers which made it confusing to the UCLA pathologists. Since I don’t have a picture of my MRI before or after surgery-you might be able to figure out where my tumor was in this brain picture. My tumor was on the pineal gland pressing up against the cerebellum and the cerebrum (deep inside my brain). The last MRI results showed that the tumor was gone (you could not visibly see it). We’re hoping that it doesn’t start growing back while we are waiting for me to start treatment…..

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.