Just one chemo/radiation treatment left on Monday. Whoo Hoo!
It will be nice to have a long rest from this and maybe feel normal for a while? There are still a bunch of appointments lined up until I see my Oncologists and do my post radiation MRI’s. I am currently seeing two different Physical Therapists. One as part of the radiation/chemo treatments to help manage the brain/nervous system. The other is for my balance/visual acuity issues from the inner ear issue. Next week I finally get to see the Otoneurologist. He is a Dr that specializes in neurological issues of the inner ear. If it was not for this problem I would be golden ponyboy (who got that reference ;p )
Since I am in the trial for the new contrast agent, I will have three MRI’s at 6 in the morning mid September. They are going to have me taper off the steroid and hopefully I can get off the anti-seizure med as well. I am not a fan of taking it.
I hope to go mountain biking on the 21st. I told my Radiation Oncologist I would take him and his friend up to Sandy Ridge. With the balance work the PT has given me I should be able to at least ride up the hill and roll down. Won’t be doing anything “crazy” or ride like my old self but it sure will feel great to get back on the bike. If I can just do one lap that will be a win! (actually after thinking about it, if you are going to go mountain biking after brain surgery it is a good idea to go with a Doctor 😉
Today I am meeting with a group that is forming a racing team for cyclocross this fall. I have been down the team route before and it did not really work out but I thought I would give it another shot. It might be fun to go out to a few races and “support the team” when I am unable to race. Since I will be starting chemo treatments probably the end of September racing will be quite limited and I am nowhere near race shape so I see lots of suffering in my future. First race is set for Sept 7 at Alpenrose. The Wednesday night Date Night series is probably my favorite. Just a great way to spend the evening after work. I have already registered and I will have 3 weeks to get ready!
After doing some reading it sounds like the 28-day Temodor cycle can really knock you down. I am starting to get a bit worried. Fingers crossed I am abby normal in how I tolerate those treatments as well. The 6 week chemo/radiation has gone better than we expected or hoped.
Oh and I also wanted to note. Being on this Ketogenic Diet one of the side effects can be horrible leg cramps. The diet flushes water and thus often flushes out much of the electrolyte minerals that your body normally holds onto like: potassium, magnesium, and sodium. I have had some cramping at night in my calves but last night they really hit me. I could not make them stop. I had some issues with this mountain biking in the summer a few years back and did some research. Apparently Pickle Juice can help eliminate cramps. So I got up and ate a couple of pickles. When I finished my 2nd one the cramps had stopped.
So, if you are prone to muscle cramps – eat a pickle or two!
Sorry this post is a bit disjointed sort of a ramble but it is a beautiful Saturday Morning. I have my coffee, the hummingbirds, so I can ramble if I want…
Thanks Everyone for all the encouragement I appreciate it immensely.
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!
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!!
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.
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.
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!
We have a great doctor ( Jerry Jaboin ). He focuses on research and knew about all the latest stuff we have read about on the internet. One comment he made is that not much progress was made on brain tumors a few years back because there was no money for research. That has changed recently and now lots of new developments are starting to happen. He is following clinical trials closely. His specialty is treating Glioblastomas so we feel like we are in the right hands. Plus he is a lot of fun to talk to and as Jessie said, gave us cheese.
I was fitted with a mask to hold my head in place so they can target the tumor area. They can shape the beam now and he feels the tumor was away from all the “vital” stuff so I should have a good treatment with very few side effects.
My first radiation treatment is scheduled for Tuesday next week.
This is NOT my mask but one I found on the internet to show what it looks like. I will see if I can get a picture of mine. I know they took a couple.
I have also made it into a study using a new contrast agent in MRI’s to using Ferumoxytol on Glioblastomas to highlight the cancer cells. Fermoxytol uses iron particles to show up differently in the tumor cells via an MRI. This is important after treatment as the area treated can be swollen and look as a false positive for tumor regrowth. The hope is this new view will give us a more accurate picture of the tumor blood supply and how much actual tumor there is.
And of course it would have been better if I could have had an MRI done with this new agent before surgery but we did not know it was a Glioblastoma before surgery. Everyone thought it was an Oligo and this study is not being used on Oligo’s.
So Wed, Thur, Friday I will have MRI’s done with various contrast agents and then Chemo and Radiation starts Tuesday next week due to 4th of July being on a Monday and delaying my start one day.
So my Fireworks will be a day late this year.
Overall doing well and everyone has been so positive given my age, fitness, and how well the surgery went. I cannot say enough how important it is to stay fit and eat healthy. You never know when you will REALLY need that fitness to kick in. I never would have expected that going to the gym every day would have resulted in me doing so well coping with a brain tumor. Dr Jaboin even made a comment how well a patient he had did as he started a fitness program once he went into radiation therapy and ended up in better shape than he started in. It is never too late to start!
Oh and Jessie and I have started on the Ketogenic Diet. It is supposed to be beneficial to cancer treatment. It goes completely in the opposite direction of what I normally ate as it is much higher in fat but it has a emphasis on vegetables and I can live with that. The bulk of the diet is fat with moderate protein and little to no carbs. I was really eating more protein with moderate carbs and little fat so maybe I will get lucky and die of heart disease in 30 years.
I would be happy with that!
In the race for favorite doc we have a winner! Meet Dr. Jerry Jaboin-the radiation oncologist. https://www.ohsu.edu/xd/health/services/providers/index.cfm?personID=3427
This guy is wicked smart, charismatic and really gives us a lot of confidence in his skill and this treatment. Plus he gave me cheese. Tom and I are going to adopt him. ❤️. Longer update later.