May 042017
 

[for you TL/DR people: MRI was good next one in two months]

This has gotten so mundane that I don’t even post about it anymore.  Life just plugs along with the daily inconveniences of wearing sticky, itchy, annoying pads on my head.  I am sure they will be even worse when it gets hot in summer.  I had a great visit with Jessica Morris in NYC.  She is a few months ahead of me and is an Optune wearer.  She had problems with the pads overheating in the summer last year.  So another thing to look forward to.

My Aunt Chemo still comes to visit for 5 days every month and she love to bring along the constipation just to let me know she loves me.   Jessie and I have gotten better at dealing with this little gem and it has gotten better each round of Chemo.

So onto the good stuff.  The MRI went fine – soon I will be able to sleep in that clicking, clacking, booop booop booop tube.  There are two machines they seem to put the brain people in.  The one I had today must be a slightly different model since the tests sound and feel different.  The technician was new and she asked if I get these once a year – HA!  I counted all of the times while I was in there and I am pretty sure I am up to 12 now, 11 of those at OHSU, 1 at Providence when they found the tumor.  I really don’t remember that one much since I was so drugged up from the vertigo.

Today was the first time I actually got to see my scans the same day as my scan.  There are two types of images they use to “read” MRI’s.  The contrast is what they use to see if tumor is regrowing.  The good news there is it does not look like it.  Plus there are these two open areas called the ventricles. that run down the middle lower part of the brain.  My Doctor told me when a tumor starts growing it pushes good brain mass aside and that often squashes into the ventricle.  Mine looks great so it does not look like anything new is growing.

The second scan they look at does not have contrast and is called the FLAIR.  Without getting super deep into the weeds it looks at the substance of the brain based on how it reacts to the magnetic field created by the MRI.  Fat will look different from gray matter vs fluid in the brain etc.  I did have one area that showed up quite large on the FLAIR.  They think that may be from the radiation treatment.  They referred to it as Gliosis.  I will talk to my radiation oncologist about it tomorrow.

So after all that, they are happy with the scan as far as tumor progression, cautious about the potential radiation damage (I am going to blame that for my CRS syndrome [Can’t Remember Shit]), and will have me back in two months this time.  Personally I prefer the two month schedule.  I want to catch ANYTHING early when it comes to this thing growing back.

Will update tomorrow with my “2nd opinion”

Nov 202016
 

…it is when this bird takes his Optune pads off.

The Novocure/Optune results released this week have been very positive and I know it should be helping to keep this old tumor at bay AND it is a great non-invasive way to treat but it does feel like a cage at times.  I have gone just under three weeks with this thing and when I first heard about it I could not figure out why (if you had the pads on) you would not be running it 24/7.  Now I understand how nice it is to have it off.  I really noticed it yesterday when Jessie put it back on after several hours with no pads on.  My cross races and gym time are about the only time I don’t wear the pads and those 2-3 hours are glorious.  After experiencing that feeling I think we will settle into an every two day rotation where we replace my pads at work after I go to the gym.  Being unencumbered is so nice.  My mom has been on Oxygen due to pulmonary fibrosis and I can relate to her situation always being attached to something.  It is so draining to constantly be lugging something around.  Thank god I have the new version that is so much smaller than the previous version.  I hate to complain about something that is working to save my life but it is a transition accept and deal with.

Plus these pads get heavy, the four pads together weigh just over 8 ounces and then have a 2 foot cable pony tail.  It seems like you always have something tugging you down like a ball and chain.  I am less likely to get up and do something because I am attached and have to lug this thing around.  The backpack is helpful but that gets cumbersome and annoying after a while.  The pack is just a little small for me.

Yesterday was so wonderful with probably the longest period of not wearing it.  I just felt that weight and tug once Jess started attaching those pads – my cage, keeping me from flying like I used to.  But better to have some clipped wings than to have no wings at all.  Optune, just keep me alive and I will find my own way to fly.

MRI next week – fingers crossed it is a non-event AND we get to see Dr Jerry after his return from the Society of Neuro Oncologists (SNO) conference.  I am sure he will be all jazzed with new and exciting discoveries that will pump us up as well.  Half the battle is looking forward, staying positive, and having little victory’s.

Here is to next weeks VICTORY!

Oct 012016
 

Sunday night is the big night – first day of 28 day cycle – the denying reality is over.  It has been a great break from treatments but sadly it has to come to an end.  That is the shitty thing, there is no “cure” just hopeful optimism that we don’t see re-occurrence.  So onto phase 3 of the standard of care (SOC) playbook.  It started with cut the sucker out, then radiate and drug what was left, now just keep drugging it until it rears its ugly head.  My Oncologist is old school and has great success with the old SOC.  His theory, if it an’t broke don’t fix it.  Well I am broke and I want to be fixed dammit so we are looking into additional therapies. One is Optune from Novocure.  This is a device I wear on my head (as much as possible) that generates an electrical field to inhibit cell division.  Amazing story behind the development of this technology (Read here).  I always love stories that have the developed in the basement or garage aspect to them.  This device has done so well they ended trials early to put into production.  In many cases Optune is being considered part of the SOC since it has such a positive result.

That is sort of the problem once you have one of these suckers cut out.  They don’t want to do too many things that deviate from the SOC and reserve the other treatments until re-occurrence.  Sort of leaves those of us that want to prevent re-occurrence with few options.

I am getting pretty used to this Ketogenic diet thing. Actually I find it pretty interesting from a endurance training standpoint and look forward to adjusting my training accordingly.  I have delved into some great books by Dr Phil Maffetone and his site (Here).  His method is called Maximum Aerobic Function (MAF) where you train at a lower heart rate, stay 100% aerobic so you are burning fat for fuel, and build that system up so you generate more power at that lower heart rate.  The great thing is you don’t need to eat all the time as you are not burning glucose as an energy source and have to constantly replenish it.  Everyone, no matter how fat or skinny, has huge reserves of energy in our fat storage.  You just have to train your body to use it.  There are a whole lot of other benefits as well that I won’t go into so I can avoid the dreaded TLDR comments I will move on.  If you are interested google him, look at his site, get a book or two from the library, (FYI: the red book is more for just a healthy lifestyle, the yellow one is for athletic training) – will turn your thoughts about athletic performance and training upside down.

Speaking of athletics, I raced again last Wednesday.  Sadly because of my oncology appointments and MRI’s the week before I missed that weeks race.  I paid for it last week.  The good thing, my times have gotten progressively better (but then it is not always the same course week to week but very similar) but the suffering was much greater Wednesday than the previous two races.  I think I pushed more just because I knew I could and that = more suffering.  The last race of the Wednesday night series is this week. That is a day of decision right now since I will be 3 days into my 5 day chemo session.  I just have no idea how I will feel and how I will recover.  The Cross Crusade starts up next weekend and I hope to race on Sunday.  Again will be a game time decision since that is just a few days after I end my chemo.  I keep hearing how weak and sick people feel after their first round of high dose chemo so I don’t want to commit to anything because of pride if I think it will compromise me in other ways.  I am hopefully optimistic I can race in both.

Wow, really digressed there.  So to summarize after our victory post of no regrowth, I start on what they call the 28 day cycle. Five days of high dose chemo at night before bed (in hopes you sleep through the nausea),  then day 21 blood test, day 28 blood test, if labs are good, another round.  If bad we wait a bit for blood issue to resolve.  Next MRI is in two months the Wednesday before Thanksgiving.  At some point I will hear if I am approved for Optune (my insurance case worker has to approve) and that will be added to the mix.

The rest is continue on with life as normal, the problem is realizing you are not normal anymore, I have never craved normalcy so much.

 

 

Sep 222016
 

​Just finished with Neuro Oncologist and Dr Jerry our Radiation Oncologist it was great news. My scans were clear and showed no evidence of regrowth. 

I hope I NEVER get tired of saying this but it was better than we expected and better than they expected. 

Next round will be 28 day cycle of chemo. 5 days on 23 days off. Another scan in 2 months. 

Now time for dinner – whoo hoo!

Aug 042016
 

Well over half way. I have today and tomorrow, next week then Monday the 15th is my last treatment. Then I get a month off – no chemo, no radiation. About three weeks into that month downtime I get my first MRI and hope all is well. From there I go on what they call a 28 day cycle where it is 5 days of heavy dose chemo, 23 days off. I will be on that, more than likely, for a very long time. With luck and good fortune nothing grows back and in a few years I can stop the chemo. I think the plan is MRI’s every three months. I am in a trial for a new contrast agent so not sure on the scheduling yet. That is the plan stan.

Oh and the hair is definitely falling out. I am pretty lucky as I keep my hair pretty short and my hairline recedes perfectly to expose the area being radiated. So it is just the periphery hairline that is thinning out. No need to shave my head, yet. The big question, given that my hair has been on a steady “receding” trend, will it grow back once radiation is done. Fingers crossed it does!

Jul 072016
 

So day two, no big deal but I have pictures this time. Close up of me in my mask and the big old brain zapper machine.

They have lasers that are used to align my position. The panels on the left and right come out and take pictures of my head and position. They come back in and make adjustments to the table before treatment starts. Then the big machine at the top shoots me with radiation. It is pretty cool how it works. It is a beam of radiation with and aperture that adjusts as it moves around my head to block the beam. So if you aim a flashlight at the wall and had cut outs that you placed over the flashlight blocking part of the beam that is what the machine does so it can target specific areas and only hit what it needs to.

It does one pass (that only takes 30 seconds or so) then they make some adjustments and it does one more pass back. Then I am done.

I think today was maybe 15 minutes? 2 down 28 more to go!!

0706161357a 0706161357b

Jul 052016
 

​Well first Chemo and Radiation done. Other than a slightly queasy stomach that could be from not eating for 5 hours I feel fine. The mask is kind of a pain. Very tight and hurts my scar a bit. Will try and get a picture tomorrow. It is a creepy feeling being locked in place with a cage around your face and then some big machine blasting radiation at your head. I cannot see as the mask prevents me from opening my eyes. I sure hope I don’t get a cold. I cannot breathe out my mouth as well. I hope they let me have the mask when this is all done. 

1 down 29 to go! Then hopefully this little bastard will be dead.

Jul 012016
 

It is always exciting to get a package from UPS. It is like Christmas. Until today. Now shit gets real.

Not something I wanted to receive from UPS – ever….

Chemo

Jun 302016
 

So this whole tumor thing and the internet sucks. Just google glioblastoma (GBM) and average life span and you might want to start shopping for a casket. I had not spoken to any of my Doctors about my “odds” just because it is a pretty difficult conversation. And I sorta did not want to know. Well we had a great conversation with my Radiation Oncologist Dr Jerry Joboin and he said I am not a typical GBM patient. I have everything positive I can hope for AND it might not be a full blown GBM. That is extremely positive and may indicate we caught it early or during a transformation from a lower grade tumor to the higher grade. He was very encouraging and said I would be a desirable candidate on almost any trial. When you hear your chances are more in the 5-6 year range and that is because the technology has not been around long enough to have results better than that it is a good start. Plus the amount of research and technology is booming so often the best defense is just being around long enough for the next breakthrough to occur. It is very uplifting knowing you have someone in your corner like that. I actually feel like I can look forward to a full life. It is still going to suck most of the time but it is a better start than the data we initially thought.

Jun 302016
 

A quick clarification on Tom’s treatments-The chemo is a pill he will take an hour before the radiation. He will take that pill 7 days a week for 6 weeks for this round. 

The radiation is a short visit to the Beaverton campus 5 days a week for 6 weeks where they will target a small area of his brain for 10-15 min with the radiation. He’ll have to get labs done there once a week and we will meet with Dr. Jaboin every Monday after it starts. While we appreciate the offers to sit with him through the treatments, they don’t allow anyone in that radiation room for safety reasons. Thanks everyone for your continued offers of support. We are so lucky to have all of you!