1st meeting with oncologist

We had our first meeting with the UCLA oncology team to discuss pathology results and treatment options. This was a lllloooonnnngggg meeting. As usual, there were delays in getting the appointment to start on time, the cancer center was pretty busy for 7:30am on a holiday week! Once we got the ear of the doctor, he confirmed the diagnosis of a IV glioblastoma multiforme. In the week since we found out about the diagnosis, we setup command central in our home office and had relatives manning computers, doing research, making calls and sending emails to find out as much as possible about treatment options before going to today's appointment. So, because I was preppared for this meeting, we trapped the doctor with us for 3+ hours to get all of our questions answered. When I have more energy, I'll post all the details on the blog. Basically, we're going to start off with the standard treatment that includes regional radiation for 6 weeks paired with chemotherapy and see how that goes. If it doesn't seem to be controlling the cancer, we have an arsenal of other therapies, clinical trials, etc to try. Our next step is that tomorrow (12/29), we are meeting with a nutrionist/herbologist/accupunturist at Cedar Sinai that also happens to be a 10+ year glioblastoma survivior (this is an outstanding survival time BTW!). We feel that nutrition has to play some role in beating this thing, so we're going to check out what he recommends. On Friday (12/30) we have our first appointment with a radio oncologist at Hoag to talk about and prepare for radiation treatments that will begin as soon as we can get them setup. We're also picking up our chemotherapy pills tomorrow and will start them the same day that radiation treatment starts.

the fight continues...

The pathology reports came in today and confirmed that Mark's brain tumor was malignant. It is diagnosed as a grade 4 glioblastoma multiforme and will require further treatment. During surgery they were able to remove the majority of the tumor, but statistics show that it is impossible to get all of the cancerous cells without taking good brain tissue along with it. The surgeon is satisfied that he removed the most amount of the tumor that was surgically possible. Some parts of the tumor were too close to the speech areas to safely remove it surgically. We have an appointment with an oncologist on Wednesday 12/28 to discuss pathology report, future treatment and possible clinical trials. Common treatment requires radiation along with chemotherapy. We're expected to start radiation in January but are looking into possible alternative treatments as well. This type of tumor is as aggressive as they come, so we're eager to start treatment ASAP. We must wait at least 2-4 weeks after surgery to begin treatment because he has to heal first. With the rate that Mark is healing, we'll be starting treatment in no time. Mark is healing incredibly fast. We were released from the hospital on Thursday and he is walking, sleeping, eating, and speaking normally. It really seems as if nothing is wrong, but we know we have a big fight ahead of us and are ready to take it on full speed. We have a great support team surrounding us with doctors, family, friends, friends of friends, work and church and we're all determined to beat this!!! People keep asking how they can help...here's how:
* keep us in your prayers
* send us food (although we're really picky now and only eat organic foods..sorry)
* keep us laughing (jokes, funny stories, funny movies, etc.)
* keep telling us that you're with us and are part of the team :)

surgery update

The doctor finally came out to let us all know that the surgery was complete and Mark was doing well. He notified us that they weren't able to get it all because some of it was too close to some sensitive areas of the brain and further treatment would be required. We will also be getting final biopsy results in about a week or so.

As far as recovery, Mark has amazed all of his doctors. He was out if ICU in less than 24 hours and is already walking, talking and eating normally. He is actually supposed to be released either today or tomorrow. A therapist also evaluated Mark and saw no problems with speech and just some slight issues with sequencing. We will be having another full evaluation in a month to determine if therapy will be needed.

closing up

Just got a call from the OR. They are now closing him up and will do another scan to check for bleeding. He should be in recovery in about 2 hours. A recovery nurse will contact s to let us know when we can see him. I asked about results of a biopsy, but the nurse indicated that the doctor would have to speak to me about those results. He did not have to use any of the blood that he donated.

next update

Incision was made around 11:30am. Just got an update at2:45pm and they have already removed part of the tumor. They just reviewed a second MRI and are going back in for more. They said he was doing well.

prep work still going on

We got our first update around 11am. They said that they just did the first MRI to get an initial look before beginning. They have not yet started the actual surgery but will keep us updated. Could be another hour or so after they finish reviewing the scans.

finally in!

we again were at the hospital at 5am. This time it was actually going to happen. Mark was in great spirits before hand and we were all laughing and joking up until they wheeled him away around 8am. They now estimate a 10-12 hour surgery. I'll update this blog when new info comes in.

deja vu

Well, we actually made it to the hospital at 5:00am today for a 7:30am surgery.
Mark was psyched up and ready to go.
He was in his hospital gown, had on some sexy circulation stockings and had an IV drip going.
We talked to the anestesiologist and the surgeon and were all set to go.
7:30am rolled around and then 8:00am and then 8:30am....
we found out that there were several trauma cases that came in and filled up all of the ICU beds.
Because of this, they couldn't do surgery, because there were no ICU beds to use for recovery.
We waited around for a few more hours to see if any were going to open up, but they didn't and surgery was AGAIN postponed 'til Monday (12/19) @ 7:30am!! What a let down. The surgeon knew that this was psychologically difficult to get ready, set and then stop so many times. He assured us that he was going to pull strings so this wouldn't happen to us again. So...we're looking forward to a nice weekend and then surgery 1st thing Monday morning. The nice thing is that we've been able to spend some quality time with the family hanging out, rather than just staring at Mark in bed. Mark now has a shaved head and looks pretty suave. Brock shaved his head too in support of Dad (Brock's got a pretty good shaped head as it turns out :)...soooo cute!

Anyway, keep the prayers going, we still need them :)

surgery postponed

Just got word that surgery was postponed, again!
There were some red line cases that pushed all of the surgeries today and there is a case that is much more severe than Mark's that is high risk and must be performed tomorrow. Mark's surgery is now scheduled for Friday, but we're not sure what time yet. We'll know more tomorrow.

more updates

Got some more info about surgery tomorrow...
We check in at 11:30am
Surgery is scheduled for 2:00pm

He's supposed to be in the hospital for about 5 days.
Once he is able to walk around on his own, he will be discharged.
Once home, there will be a home health care worker that will visit to assess how he is doing.
They will schedule in-home physical therapy based on their evaluation.
Over time, when they assess that he is able to visit an outside facility for physical therapy, we will.

surgery date moved!

Late Friday, we were informed that Mark's surgery date/time was moved.
His surgery will now be on Thursday, 12/15 around noon.
Apparently, the doctor had some sort of conference that he had committed to that the office staff was unaware of??!!

Also, I found out about parking.
Parking is $8/day.
There is parking at the hospital near Tiverton entrance and also across the street at the medical plaza.
Parking prices are the same at both lots.

Here is info/map if you're interested:

http://www.healthcare.ucla.edu/shared/maps/#medical-center

more info about the surgery

talked to the doctor to get some more info about surgery...

Mark was not able to give his second pint of blood on Tuesday because he had a slight fever and swollen glands. We have to monitor his health. If it doesn't improve by Monday, surgery may be cancelled. They will not administer anastesia if he is ill. Mark is laying low and resting trying to keep well. If surgery cancelled, there may be an opening on 12/20, but if not, it could be postponed till after the holidays :/

hospital:
10833 LeConte Avenue, Westwood, CA 90095
310-825-4321
the surgery will take 6-8 hours
Mark will not be awake during the surgery
he will be in ICU the first 2 days and family will not be able to stay
he'll be in an open area with just curtains and other patients and it will be noisy
he probably won't be alert til late in the evening and may not remember anything if spoken to that night
he should be more alert the next day
he will eventually be moved to a more private room on the third day
he should be in the hospital at least 5 days but could be longer
visiting hours are 8:30am-7pm, but not between 2pm-4pm
he will be very tired the first few weeks and will sleep alot
he will be going through some sort of physical therapy where they will come to the house (home health)
they will shave his head an inch on either side of the incision
the incision will be about 8 inches long
after surgery it will have staples
he will not be able to get them wet for 10-14 days while staples are in