Category Archives: Tumor

Tumor

First Bike Ride in 5 months!!!

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Jessie got me out on the bike tonight.  We did a whopping 6’ish miles down to Summerlake park and back.  Balance was good, turning my head side to side was good, looking back over my left shoulder, not good.  I get a bit wobbly and can’t hold a straight line.  Have to really concentrate to do that.  Looking back over right was much better.  The other issue that has me concerned is when it got a little bumpy – that gave me some visual issues.  That is about it for the balance vision component.  The physicality on the other hand, that is an issue!!

I think this week will be spent on the trainer because I don’t think I could climb to the top of Sandy right now and feel good once done.  Just the little hills we did made my legs feel like lead and that was on my light road bike.  Lugging my heavy mountain bike up a much steeper hill for 3 miles that is a whole other story.  I am definitely weak and things just feel odd.  I don’t think the muscles are ready for heavy use yet.  LONG way to get for race shape in 3 and a half weeks.  First race might just be a parade lap.

Fingers crossed when that last chemo pill is taken on Monday the body starts healing fast!!!  I don’t have time to wait!!!

Diet, Radiation, Tumor

29 down 1 to go!

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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.

Tumor, TumorWalk

Brain Tumor Walk Weekend

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So here we are, Brain Tumor Walk weekend.  Time sure has gone fast.  I have a week and a day left with Chemo and Radiation.  I feel great but look forward to the break.  Just to get off some of the pills for a while.  I feel like we are getting the Ketogenic diet dialed in a bit.  Going back to work, and I never thought I would say this, has been nice.  It helps to have a good routine again and feel like I can still contribute.  Honestly I think my brain is working better than before.  Maybe diet, maybe getting something removed that was not supposed to be there, maybe the slight decrease in stress knowing what you are dealing with vs guessing.  Not sure but I will take it….

First, before I get distracted (you know those butterfly thoughts…), I want to say the biggest THANK YOU I possibly can to all of those that have supported Team Food Baby in the Tumor Walk (hell, and Jessie and me in general).  In a very short time we have raised over $4100.  For those of you doing the walk I really appreciate your time and support.  Getting up early on a Sunday morning and walking around downtown Portland is not my idea of a great time. So far the walk has raised over $88k, with the top 10 teams raising 3/4 of that (we are pretty solid at #5 thanks to you folks).  The more I have learned about cancer, tumor, health research in this country the more I realize it is people like us that make the difference.  The government cannot fund all of it.  Drug companies need to make money so they only want to fund what can generate a return.  So it takes the public that has been affected in some way help push the research forward.

I found out this week about an amazing event in Ohio called Petotonia.  It was created to help fund cancer research at the Ohio State University.  The brother of a good friend is riding in it this weekend.  Since 2009 this event has raised over $119 million for cancer research at Ohio State.  My friend shared with me a story about a researcher at OSU that had a new way to treat GBMs (what I have) and could not get funding from any government source.  This group gave him $900k to fund the research.  Maybe one day I can participate in this event as I would rather ride my bike for 100 miles than walk around downtown Portland.

  • Info on the event -> Link
  • Link to event page -> Link
  • If you want to donate here is Vince’s fundraising page (it is never too late) -> Link

Oh and while I am on the soapbox I would like to highly recommend the book, The Emperor of All Maladies: A Biography of Cancer (Amazon).  There is also a great three-part series done by Ken Burns, of PBS documentary fame, on Netflix basically covering the book.  I find it amazing to look back at the history of our fight against Cancer and see the theories from the 1920’s still being used today.  I experience it every day when I get my radiation treatments. Fascinating stuff.

Sorry quite the detour there from where I wanted to go with this post.  I wanted to add, I am very excited to see my sisters as they are coming to visit and participate in the walk tomorrow.  It is such a great feeling to have so much love an support when you are faced with a horrible life changing situation like we are going through now.  I cannot express how great everyone has been.  If I could say one thing to all of you reading this, don’t wait for such an event to love and appreciate those around you.  Make time for it regularly,  I know life gets busy and it can be expensive or time consuming but the people in your life are what makes life worth living.  Don’t take that for granted.

All in all – I think we are in a very good place.  It has been liberating to get back into the gym and feel my body responding to the workouts.  It takes a bit longer to recover but I can feel my strength returning.  Racing starts soon and I hope to be ready.  Shooting for Sept 7th for my first race.  All I have to do is ride my bike in circles for 30 mins and not finish last!

 

 

Oncology, Radiation, Tumor

Response to question, how much longer?

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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!

Tumor

Back to work

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On Monday I went back to work for the first time since the end of May.  I am now working part time in the morning then going to treatments in the afternoon.  It has been bittersweet going back to work as I feel like I have had a “taste” of retirement.  Monday morning as we pulled out of the garage and drove away from the house there was a bit of longing to stay home.  I always knew I would be going back to work and I enjoy my work but still it is really nice to just be at home puttering around.  I am really good at that.

Working just 4 hours a day is really hard.  The day goes so fast.  All it takes is one or two meetings and your day is just wiped out.  Plus, I have to change the structure of my work day now.  Monday just whooshed by and I was able to hit the gym before my treatment.  The goal is 4 hours of work in the morning, an hour of gym time, then off to get my brain zapped.  Mondays workout was quite the eye opener revealing just how much fitness I have lost.  I wanted to take it easy and did but boy there is a long way ahead.

A few weeks back we met with the Palliative care group at OHSU.  Their goal is to help you be comfortable throughout your treatment.  One of the questions I had was how to workout while undergoing treatment.  With any kind of training you are essentially breaking down your muscle in hope that your body repairs them thus making you stronger or more fit.  I was not sure what I should/should not do while taking a drug that inhibits cellular repair.  I was given a referral to see an Oncological <sp> Physical Therapist but she is so popular I could not get in until September.  Monday I got the call she had a cancellation so I went to see her on Tuesday.  Wow, so happy I did.  She said this is not going to be like typical PT for a knee where you see them for 6 weeks and you are done.  This will be a long term thing as I am dealing with a neurological issue and trauma to the brain that affects your entire body. They approach this as a complete system.  Your nervous system is tied into everything and does not turn off.  Plus it is sorta freaked out from the surgery, the swelling, the radiation, basically everything going on in the brain.  The eventual goal is to teach me ways to calm it down and reset it.  She talked about something called Neuro-Glides and Qigong so I will learn more about those on my next visits.

The good news is she wants me to do strength training but to listen to my body.  Don’t push as hard as I did in the past.  Maybe not multiple sets but one set and to get 10 good reps.  If I can do more than 10 my weight is too low and to increase.  AND it is going to take me a couple days to recover and expect that.

The other good news is she got me in with another PT that specializes in vestibular issues.  While I still do not have an actual diagnosis as to what caused my vertigo, it is generally accepted it is something related to my inner ear/8th nerve causing my balance and dizziness issues.  Looks like I will have to retrain the signalling system in my body to compensate as we have no ideal if/when it will heal.  I still have a week before I see him.

So, back at work and VERY glad to be able to return to work (they have been great throughout this whole ordeal and I really appreciate that).  Back to the gym and have a long road ahead.  Back to a little bit of normalcy and that is probably the best thing for me.

Tumor, TumorWalk

If you are not part of the solution you are part of the problem.

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Well it is another of those – bing wide awake mornings.  With this Ketogenic Diet and all the drugs constipation is a constant concern so one of the ways to battle that little problem is to drink an enormous volume of water.  From the time I wake up I literally pee every hour on the hour so it is almost impossible to make it through the night without having to make a trip to the restroom.  This often results in me wanting more water so a trip to the kitchen for yet another glass and the cycle resumes.  Because of my late night wanderings, and all ambient light, I am left more awake than sleepy and thus toss and turn once I have returned to the bed.  Tonight (well this morning really) was even worse as I was really mad at myself and I could not let it go.  Now I have fodder for another post.

Last night we went to Portland Brewing for the weekly Geeks Who Drink trivia night.  It is held there every Saturday at 7pm.  Portland Brewing will also do something pretty cool and will allow fundraising events where they will donate portions of the bill to some worthy cause.  Last night was a fundraiser for the National Brain Tumor Society and seeing how I have a brain tumor Jessie thought we should go.  (and to be honest we like beer, even though I cannot drink we feel pretty at home in a brewery and I miss them)

Jeff, Jessie, Frank, and myself went as representatives of Team Food Baby.  The host did a good job mentioning this was a fundraiser in conjunction with the standard trivia night.  There was a representative from the National Brain Tumor Society (NBTS) and she said a few words, gave some facts and figures, and we started in with the trivia.  Once the game ended and the waitress came by with the bill Jessie mentioned something to the waitress about the fundraiser.  The waitress said I am glad you mentioned that as we need the customer to say something to apply the donation to the charity.  I thought seeing how this was a “fundraiser” that all that would have been arranged in advance so I went and asked the rep from the NBTS if we had to specifically say something to the staff.  She said that was a good point and would say something about it to the group.

The whole time I was there I did not see anyone that appeared to be there due to a brain tumor and felt like I should say something.  This is part of my general struggle with my situation.  Do I get involved? How much? To what level? And why? I am sort of a private person and like to keep things to myself and not be a martyr or a hey look at me I have this horrible thing and I want to make you look at it and make you uncomfortable because of it and guilt you into doing something you don’t want to do because of me and my thing.  I never liked it when others did that to me.  Frank said something to me this week as I expressed my confliction about my situation and he said, in general, if you are not part of the solution you are part of the problem.  I felt compelled to stand up last night and help drive the point home that Brain Tumor suck and they can happen to anyone and implore those people to help out by tossing a few bucks into the kitty.  Did I do it? Nope and that is what bothers me.  Why didn’t I?

And that is why I was tossing and turning all morning.  I am not shy; I don’t have a problem talking in front of a bunch of people.  I have a good story to tell so why didn’t get up and say something.  I am sure we could have gotten a few bucks more.  Brain tumors are so rare and the numbers pretty low they did not get much attention a few years ago thus research is way behind.  I had an opportunity to help out and I did not take it.  I consider myself very lucky as I have not been debilitated (yet) from this disease and many people are.  I need to take advantage of my good fortune while I can and do what I can.  I will not make that mistake again and will work hard to be an active participant in this fight to find a cure.

It’s good to have a cause right?

So, those of you that are seeing this on facebook, can you do what a couple of my friends did and share in your feed, the link our team page, and say: Hey a friend of mine is in a shitty situation and there needs to be more research into brain tumors.  Cut into Starbucks (or Budweiser or Coors it’s shitty beer anyway) profit and skip that coffee (beer) this week and send some cash to fund brain tumor research.  You might just make a difference.

http://www.braintumorcommunity.org/site/TR/TeamraiserEvents/PortlandBrainTumorWalk?pg=team&fr_id=2735&team_id=78344

Thanks!!

Tumor

What do they say? No news is good news?

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So I have been really bad in posting. I think mainly because of the old adage, no news is good news. Plus, Jessie has been doing a great job of keeping everyone up to date. Other than the odd twitches and an itchy forehead from the radiation I have been doing pretty good. Still have dizziness issues from the lingering vertigo (I think – seems to get worse as the week of treatments progress). We are waiting for a referral to an ENT at OHSU to see what he thinks. The original specialist appointment is not until mid August. Hoping to see if anyone else can shed some light on the problem.
 
Going to head back to work next week part time in the mornings, hit the gym, then off to treatments in the afternoon. Hope I can push thought the predicted fatigue that is supposed to hit in that 4th week. So far I have had good energy and I think that steroid has me wired throughout the day. Makes it hard to sleep at night most of the time. Staying consistent with exercise is supposed to help tremendously with the fatigue and recovery. AND I want to be in some type of cycling shape when this treatment is over. Racing session is just around the corner. Jessie does not want me to lose any more weight but I think I can stand to lose a few more pounds. I have hit my goal for the start of racing season but if I can drop another 5 and get some muscle back I would be pretty happy starting the season.
 
Found out our radiology oncologist likes to mountain bike. He has a friend coming into town mid-August and I promised to take him to our best trails. I need to be ready for that!!! Time to shop for a new helmet! Now that I have a compromised cranium I want to make sure I have the best protection I can get!!!
 
Now time to crank out some all trails challenge updates.
Tumor

6 weeks post op

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We had the 6 week surgical follow-up yesterday. It seems like there is always a surprise when we visit that office and yesterday’s surprise was that the surgical fellow we had been dealing with (Dr. Ibrahim) had finished his fellowship and was on his way back to Egypt that very day so we had a new surgical fellow who had just moved to Portland. Dr. Ibrahim was really my lifeline on surgery day and met with me twice that day post-op to go over Tom’s status and how the procedure went and attended all his rounds in the hospital. He was the doctor who ultimately had to tell us the GBM diagnosis which I can’t imagine is ever easy no matter how many times you do it. We’re really sad we didn’t get to say good-bye and he didn’t get to see how well Tom is doing and that we have not let the diagnosis slow him down. For a surgeon, he was the most compassionate one we have met to date and I think he is going to do a remarkable job wherever he ends up in his future. The new doc seemed nice but seemed a little distracted by the GBM diagnosis and felt that he needed to let us know there was still hope (duh!). He did remark that the incision site is very well healed and the incision area has firmed up. We asked about biking and honestly this doc isn’t tremendously athletic so I don’t think he “gets it” but said he could do it as long as he is careful and there is always going to be the risk of trauma to the site. He also re-iterated that the most recent MRIs show no tumor regrowth at this time. We seem him again in 6 weeks as they are going to keep following him despite their work in this largely being done. We do have the scoop on another surgeon in Seattle formerly of OHSU who has had some great results with our oncologist Dr. Neuwelt as together they have an 8 yr GBM survivor and a 10 yr oligodendroglioma survivor that Tom is friends with. If there’s ever another surgery needed, we may consider him if he’s still practicing at that point. Though there’s no reason to think the current surgical team didn’t do an excellent job! 
Sunday Tom got a little too ambitious and did his hour on the stationary bike and then we did a 6 mile hike. Probably a bit much and we thought he was having some muscle spasms in arms and legs from overdoing. We saw Dr. Jerry on Monday who thought it might be electrical impulses from low magnesium levels, but his labs on Thursday showed the magnesium levels were fine (platelets and white blood count are doing great too!) so yesterday they prescribed a low-dose steroid as it could be a known and common side effect (microseizures) from the radiation causing swelling. We see Dr. Jerry again Monday and he can weigh in once he’s had the steroids for a few days. 
There’s also been an uptick in the dizziness which they are hoping the steroid will help. We are going to redouble our efforts to get in with an OHSU ENT as his ENT specialist appointment isn’t until mid August to follow-up up on the vertigo. 

Overall Tom is still doing great, a little more fatigued this week from the radiation but no signs of nausea yet. 21 treatments to go!

Oncology, Radiation

Day Two – Radiation with Pictures

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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!!

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Oncology, Radiation

Day One Radiation

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​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.