La Dolce Vita

Last month we rode in the LIVESTRONG challenge. Our kids, Kelden & Nick, myself and my sister, Michelle (who flew in from Phili) all did the 45 mile ride. We had a blast! The ride was great – steep hills, lots of curves and even a small creek crossing. We rode through the Austin country side and past people’s farms. There were over a 4500 participants and more than $3.8 million was raised to fund cancer research and education. It was really impressive to see such a turn-out and the volunteers were great. Thanks to everyone who contributed!

Kev is continuing with his chemo cycles – he finishes up his 9th cycle this week. There has been no discussion as to when these rounds will stop. I suspect that as long as he is showing some positive effects and no better option is available we will continue with the Nexavar and Abraxane. He gets scans at the end of this month – the typical MRI and CT but also this time a PET scan is scheduled. The MRI gives a good look at the brain. The CT is good for the torso – major organs. The PET (positron emission tomography) is a full body scan that acquires metabolic information based on the detection of radiation-tagged glucose. A PET scan can distinguish between living and dead tumors unlike MRI or CT which only confirms the presence of a mass. He doesn’t get PET scans very often – I think he’s only had 3 in the last 8 years. Probably because the cost is more than 10x that of a standard CT and the results would not really change the treatment protocol, given the limited choices. But now they want some info that they can't get from the CT/MRI.

A few weeks ago Kev and a few of his colleagues were rewarded by Boeing with a trip to Kennedy Space Center (KSC) to see the Space Shuttle STS-122/10A launch. Although he had seen landings (at Edward’s AFB), he had never seen a launch so this was definitely a great award. The launch went off on time with mostly clear skies and they had front row viewing near the VAB. (see picture). The following day he returned home to work the mission and was very closely involved in the repair to the torn solar array. A picture of Kev and some colleagues at work.

Apparently his MacGyver skills at keeping old lawnmowers/cars/houses running also work well for space hardware. He was part of a small team that designed and tested the "hinge stabilizer" (aka cuff-link) that resulted in the repaired P6 4B solar array. Here's a couple of entertaining links from Space.com: Terrific mission & How to Build a Cuff-Link.

Although the cancer is not going away, Kev’s health has improved greatly since August. He is completely off all pain meds and he is sleeping far better than he has in over a year. He appears to have healed completely from the hip replacement surgery. He still has a limp and walks with a cane, but otherwise no one could tell he was ever so sick. Even his hair has grown in enough to pass for a nearly normal 40-something!

Chemo continues with cycle 8

This weekend is the LIVESTRONG Challenge. Thanks to everyone who has donated. I’m starting to worry that our training wasn’t nearly aggressive enough. The 40-mile course is actually 45.54 miles with about 1100 ft of elevation gain. The posting explains: “Route distances will vary slightly for the LIVESTRONG Challenge Austin due to road limitations that compromise the LAF’s high safety standard. However, the constantly rolling Hill Country terrain coupled with heat, wind exposure and the infamous Texas chip and seal pavement makes the Austin course the most difficult in the series.” …hmm..nice – I definitely think the emphasis this weekend will be on “Challenge”.

Kevin is doing great. He is gaining weight – currently at 165 lbs. It’s hard to believe this past spring he was only 140 lbs. He is also regaining a lot of his strength and has even started doing a few little projects around the house. – Must be all the positive energy everyone is sending his way. He is in the 2nd week of cycle 8 with his chemo. Last month they tried to double his dose (cycle 7) and after a couple weeks some of the bad side effects came back on pretty strong, so they backed off. This time through they started him at 1.5x standard dose. His scans continue to show stabilization, but the hope is that we can actually get some regression of the tumors. The brain MRI was also positive (as in good news). The Stereotactic Radiosurgery seems to have helped since the MRI indicates necrosis in the frontal lobe tumor. We also discovered (from scans made the day of the radiosurgery) that just prior to the procedure, the tumor began to bleed quite a bit. But now the scans show a decreased amount of blood indicating it is being absorbed back into to the body.

Stereotactic Radiosurgery

Despite the name it does not actually involve any "surgery". Instead it uses a focused beam of high-dose radiation aimed directly at the tumor in the brain. Kevin had his procedure a week ago last Thursday, Aug 9th. Unfortunately they changed the plan late the night before and instead of checking in on Wed night they decided we should arrive at the hospital first thing on Thursday - 6:30 am. If there's one thing I'm learning through this journey it's to expect changes, but I still don't like it.

First an IV catheter was placed in Kev's arm for fluids and meds. Next a metal ring-frame was installed on his head. It's held in place with screws in 4 places. Local anesthesia is used to numb the area just prior to inserting the screws. I was in the room with him as they were installing the ring frame, mid-way through the process, the neurosurgeon and nurse look at me and ask if I'm OK. As typical, these procedure are much worse for me than Kev. Luckily I had a chair in a corner and could lean against the wall. After the frame was on, Kevin commented that it felt like his head was in a vise - but of course - his head WAS in a vise.

Next contrast material gets injected in though the IV. This makes the tumor very visible on the CT scans. A cage-like grid is placed over the frame and the entire thing clamps to the table. The cage acts like a grid on a map and helps the Drs determine the exact location of the tumor. After the CT scan we went to a room and waited. During this time the radio-physicist maps the tumor location and determines the best strength and directions for the radiation. Then they actually make a dry-run to verify everything works as planned. This takes about 6 hours and Kevin slept the entire time. I spent the time in silence worrying about the past, present and future.

When the neurosurgeon and radio-physicists were finished they came and got us and took us over to the Radiation dept. Kevin goes on the table with the frame secured to hold his head in position and the high-dose radiation beam is aimed at the tumor from different angles. This takes about 45 mins. The frame is removed and we go back to our room to wait the required 2 hrs (for monitoring) before we can leave. After an hour drive, we made it back home by 7:00 pm.

Now we wait until his next MRI (Sep 25) to see if it was effective. In the mean-time we continue with the chemo-therapy.

Starting Cycle 6

Wow, it’s been over a month since our last post – time does fly sometimes. We’ve been pretty busy not only with the many Dr visits, but also with all the usual activities a family with two teenagers experiences. Kev recovered very well from his brain surgery although there seems to be some lingering numbness/tingling effects to his left arm. The neurosurgeon agrees that that could be from the surgery since the area of the brain he was working on controls the motor functions of his left arm/side. The very good news is that the pathology report post surgery did not find any cancerous cells in what was removed – the neurosurgeon was as surprised as us since all indications pointed to a reoccurrence.

Kev returned to his chemo schedule the week after surgery and has now finished up cycle 5. Scans last week showed stabilization and some regression of his remaining tumors. So he will continue with the chemo starting cycle 6 this weekend. Much of the usual side effects are still bothering him – the neuropathy in his feet was especially painful so he was given a new drug, Lyrica, to help with that – it’s working pretty well. The hair loss continues. Luckily, all the skin issues seem to be avoided this time.

He met with the radiologist who will be performing the radio-surgery on the tumor in his in frontal lobe next week (Aug 9). Apparently this time they want him to check in the night before and stay over. Since the procedure is scheduled to start at 6:00 am – this is beats an hour-long drive at 5:00.

Kev’s sleep patterns have been a mess for the past month – it wasn’t exactly normal before the brain surgery, but after it really went haywire. Immediately following the surgery Kev barely slept at all. He’d stay up until 4-5 am fall asleep for a couple hours and be up at 7-8. He seemed to have lot’s of energy and would get work complete in the middle of the night – he even finished up the plans for our garage rework/remodel. We suspected this was due to the steroid, Dexamethosone, he was taking to help with swelling reduction/healing. But it continued even after he discontinued use – up to a couple weeks ago. Then he started falling asleep at about 8 pm and sleeping easily until 10 am or when the kids would start making too much noise or needed a ride somewhere. Now he often naps at 3 pm, 7 pm and finally going to bed for the night at about 1 am.

His pharmaceutical menu now includes:
Nexavar (chemotherapy drug)
Abraxane (chemotherapy drug)
Hydrocodone, Oxycontin, Oxycodone & Actiq (his suite of narcotics for pain – his favorite being the Actiq lollipops)
Lyrica (neuropathy pain relief)
Keppra (anti-convulsant)
Ritalin ( to help stay awake/alert during the day)
Ambien (to help sleep at night)

Recovery

Kev was released from the hospital on Thursday (6/28) and has been feeling great! Seen here visiting with one of our chickens and enjoying the nice weather this weekend. The surgeon did a great job matching up the new scar with the old. I resisted the urge to ask if he re-used the same screws - $1068 ea (and we thought space hardware was expensive)!

Kev was working from home on Thursday and returned to the office today. He meets with the oncologist on Friday (7/6) and his pain management Dr on Tuesday (7/10). Then he goes back to the nuerologist in 3 weeks (7/24) to get his stitches removed.