The Making of The Mask - Pre Radiation Set-Up

Well, today was the start of my radiation therapy. I had to fast for three hours - I ate at exactly 3 hours before and RIGHT after. Fay made sure to pack me lunch.

I checked in and was brought back to get my IV line put in - ON TIME again - awesome. It wasn't like the hospital experience where one nurse missed my vein a total of five times. The nurse today got it on the first try and I was all set to go....then we were told that they were running an hour behind schedule... ugh. So much for on time.

After a few more questions for Dr. Swift, my Radio-Oncologist, and an hour wait we were brought into the Computed Tomography (CT) room where Fay documented the entire process with pictures and some video.


They brought the "mask" out and I was shocked. It was a thin piece of flat plastic about the size of a piece of binder paper. It was placed into a bath of hot water for several minutes and was pulled out with tongs.

The technician then placed the mask around my face and head. Stretching it and molding it around my face. Then attaching the flat piece to the table with plastic clips.

It felt like a very hot blanket on my face. For someone with claustrophobia, it would be their worst nightmare. It's crucial that I don't move my head when I'm inside the radiation machine, so the mask will ensure that I am still.

Before

The plan is to merge, on a computer, my MRI before surgery, my MRI just after surgery and the two CT scans from today in order to identify the exact location and treatment for my tumor. Then Dr. Swift creates a map that the radiation machine uses to "zap" (technical term) my tumor from 360 degrees every day, except weekends, for 6 weeks.

CT scans are pretty quick compared to MRI's which can last 45 minutes to one hour.  After the mask hardened, the technician left the room for my first scan. Since I was asked to keep my eyes closed, and stickers were placed on my eyelids, I couldn't keep track of time but the first one felt like no longer than 5 minutes.

I was brought out of the device, eyes still closed, connected to the CT contrast material and sent back in the machine for another scan, this time with contrast.

After

It started with a voice, over a loud speaker, saying that the contrast was being put into my veins.  Then, I felt a warming sensation all over my body. It slowly got warmer and warmer and then my body got down right hot! It only lasted a minute or so. It was the opposite of the MRI contrast, which sends a cooling sensation. Then after approximately 5 minutes I was done and the Mask was FINALLY removed!

I was in the mask for approximately 15 minutes. As time passed, I became more and more panicky. Especially, with my eyes closed.  I have no idea how someone who has any difficulty with claustrophobia handles it.

We were then given a date for our first radiation appointment (Tuesday, March 17th), my IV was removed, and I was told to drink eight 8oz glasses of water to help flush the contrast from my body, and we were allowed to leave.

The entire experience was surreal...

"Thoughts, feelings and most of the typing by Josh, organization and editing by Fay" 

Radiation Oncology Appointment - 3/4/15

The appointment went as well as could be expected. A lot of information, in a short amount of time. Speaking of time, we were called in ON TIME - no waiting!

Below are some answers to some of the major questions that were asked in my Radio-Oncology appointment.

Dr. Swift

We will be using Intensity-Modulated Radiation Therapy  (IMRT) for 6 weeks, 5 days a week. I guess tumors stop growing on the weekends?? (Thanks Julie)

The beams of radiation will rotate around my head, 360 degrees, and every beam is slightly different. The focus being on the tumor and little surrounding area. After the initial 30 minute treatment visit, they will then last about 15 minutes. The actual radiation treatment, once the beams are on, is less than 2 minutes. In addition, I will meet with Dr. Swift once a week so he can check in to see if there are any problems.

What side effects can I expect given the location of the tumor, type of tumor and amount/duration of treatment?

Short Term Effects:
Fatigue, possible patchy hair loss, nausea, sore skin, possible headaches from swelling. If I develop headaches, I will be put back on steroids to control it.

Long Term Effects:
Two long term risks were mentioned:
*Possible new tumor (about 15 years on average) could be a benign or malignant brain tumor (1/300)
*Less than 1% chance of needing surgery to remove healthy cells that were damaged by radiation.

What is the sum of radiation that I can expect over the course of my treatment?
The dose is unknown until mapping and CT scan are complete. But for my type and grade of tumor, the dose range is 54-60 unit gray.
A personalized mask will be made (see picture) to ensure I do not move during treatment. I have an appointment to have this done this Friday, March 6.

 


What did the Tumor Board recommend?
Everyone at the Tumor Board agreed with being as aggressive as possible so that we stop the tumor from growing into some very critical areas (motor cortex) and we can prevent serious, permanent long term deficits.

Damage to the Hipacampas?
The Doctor said that they try to spare it if they can. He said that the location of my tumor is above it and not touching it. Therefore, in my case, radiation will not involve this part of the brain.

Will radiation cause difficulty in future readings of my MRI's?
All teams are familiar with reading MRI's of people who have had radiation. No concern.

What, if any, impact will it have on my seizures? Radiation treatment can cause seizures. However, since I already have a history of seizures (I am currently taking two anti-seizure meds) it would be impossible to know if the radiation treatment was the cause.
The ultimate goal is to be taken off of all seizure meds after treatment is completed.

All in all, this was a very informative discussion and I'm proceeding as recommended.

Tumor Location - Click to enlarge

"Thoughts and feelings by Josh, organization and editing by Fay"

Radiation Concerns

I'm feeling very nervous that radiation might impact me more than I expected. Especially, after talking with a family friend whose husband just passed away from a brain tumor.

She was more than generous to take time, even though she is going through so much, to talk with me about some things that she wish she had known before her husband started radiation. She gave me some really good information and good questions to ask the doctor. I'm so thankful to her for our talk.

There are a lot of factors that come into play - there are more than 120 different brain tumor types, different grade levels (how aggressive), types of radiation, amount/length of radiation, and the location of the tumor in the brain that effect treatment outcome.

After learning more about it, I'm really apprehensive about starting radiation therapy. I'm anxious about tomorrow's meeting with the Radio-Oncologist.

National Brain Tumor Society Support

Many thanks to the National Brain Tumor Society for featuring my blog, on Facebook, the morning of my third brain surgery. I've been involved with this great organization now for 10+ years and plan on helping them for many more. 

I wound up having an emergency surgery, which meant that I had three surgeries in a week's time. I'm home now and struggling through physical, speech, and occupational therapies. I am also about to face 5 weeks of radiation followed up with a year of Oral Chemotherapy (Temodar) to address the remaining 20% of inoperable tumor. 

I intend to continue raising funds to fight brain tumors and will be at their San Francisco Walk on May 2nd.

Thank you NBTS - Josh 

"Northern California Brain Tumor Community: While you can't see it I'd like to share the incredible support that was shown to Josh because of each of you...his message reached over 20,000 people, over 100 comments of love and support were posted. Josh we are all pulling for you this week! "

Update & Plan - post by Fay

We met with Josh's NeuroOncologist today.The plan is to do Radiation (5 days a week) for 5 weeks followed up with a year of Oral Chemotherapy (Temodar).

The Tumor Board met today to discuss Josh's case and came up with treatment plan options.

The three options presented to us were:

1. Wait & Watch - follow with MRI in 3 months
2. Begin Chemotherapy for 12 months (a few types to be considered)
3. Begin Radiation and follow up with Oral Chemotherapy for 12 months

Ultimately the choice is Josh's, but it was recommended that we act aggressively and promptly. There is concern because the tumor has grown so close to critical areas of the brain. The idea is to catch/stop the tumor before it grows into these danger areas.  It has started growing down and back (deeper).
Josh is on board with moving forward aggressively.

I'm not sure what he was thinking, but I was completely caught off guard when I heard the Doctor's words.   I felt like I had been punched and knocked down. As I sat there, I concentrated on not crying.
He's just barely through the surgeries and he's struggling through recovery and now he still has to go through this.
I don't know what else to say right now.

Post Surgery Check-up: Good News & Bad News

Thoughts and feelings by Josh, organized and edited by Fay.

Well, I received some good news and some bad news today... and waited an extremely long time. What gets me through the wait is knowing that the doctor is taking extra time with people in my situation.

First the good news. The surgery was a success. The grid monitoring that was done proved to be a huge aid to the surgeon in guiding him safely during surgery - though it was a terribly painful and stressful process, it was well worth it.

During my final surgery, they were able to "shock" the electrodes to guide them through surgery to remove as much of the tumor as possible.  In addition they removed a small seizure focus point. The seizure focus points that remain are far away from the tumor site and would have been difficult to track and remove. The other GOOD news is that the pathology of the brain tumor shows that my tumor has remained a Grade 2 Oligodendroglioma - it has NOT upgraded. 

Oh, and my staples are out and I can finally wash my hair... tomorrow! Only about 10 of the 54 staples hurt when the came out. They do not provide pain medicine and the pain was only a few seconds for each one. Also, one stitch was removed where the drain had been placed during the emergency surgery.




Now the bad news: Approx 20% of the tumor remains. It is too deep and too close to the motor cortex to safely reach. This is where the mapping helped, they could see how far was safe to go before permanently leaving me without the use of my right arm or worse. He pushed it as far as he could while ensuring that I didn't come out of this with any deficits. Dr. Chang (picture above) said that the Neurologist who was present during surgery was scared about going any further because when they touched certain areas, my hand and face twitched.

The 80% of tumor that was removed had well defined, clear boarders. The 20% that remains has roots and branches that are not well defined. Dr. Chang explained that the if you picture the tumor as black and the healthy brain as white, the part of tumor that is left is gray - blending or mixing with the regular brain and therefore, inoperable.

My case will be presented to the "Tumor Board" this Friday.  This is when teams of experts meet and discuss patient cases. My Surgeon, my Neuro-Oncologist, a Pathologist and Radiologist will all attend to discuss my treatment options. My latest MRI, day after the final surgery, as well as all of my case notes will be presented. There is some disagreement of treatment plans with a slow growing tumor type. We were warned that disagreements will be had and that I will receive a call with all of my options. We were told that there is no single right answer - there is some controversy over what treatment is best.

Since surgery is no longer a safe option for me, we are looking at chemo, radiation, or the wait and watch plan.

Other items: I am now allowed to lift up to 25lbs - carefully, I've developed a rash caused by one (or all) of the medicines, my brain is still swollen, it hurts to cough, and I can exercise as tolerated. Now that I have tapered off the steroids, as of this morning, I'm anxious to work off the more than a few pounds that I've gained.

My tumor, thankfully, is still slow growing. I've come to know so many families absolutely torn apart by this disease. A family friend passed away just last night and it actually hurts to think of his family...his wife and his two very young kids.

So, while it is hard not to feel depressed, I know I am fortunate.
For now, I will enjoy my first beer with my father-in-law and focus on my recovery.