29 down 1 to go!
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.
Thank you All – Recap, Portland Brain Tumor Walk.
Jessie and I are thoroughly pooped. What a great day and great motivation heading into my last full week of radiation and chemo. This is a huge, Huge, HUGE, THANK YOU (!!!) to everyone that has supported us as we have progressed through this ordeal. From all the offers of; if you need something call, the meal train, our friends and family that came from far and wide to visit and participate in the the tumor walk, EVERYONE that donated and helped fund raise for the walk. I NEVER expected anything like this. I knew I had great friends and family and that they would “be there for me if I ever needed it” but I never thought I would “need it”. I cannot express enough how touched I am when ever I am in contact with any of you. Your generosity is greater than I can thank and I appreciate it so much.
Going to the tumor walk today I saw that same level of support in dozens of groups and families. It is amazing how we can rally around to support each other in times of need. It is extremely encouraging to see other survivors thriving and inspiring others as this can be a terrifying ordeal. I was not comfortable being up with a group of people deemed Tumor Survivors. I don’t feel I have survived anything. Everything has gone so well and it has been such a short time I don’t feel like I have been through the gauntlet that others have. While I hope I don’t have to, I am constantly worried that it will get worse at some point. That nagging feeling that all has gone too well so that something bad is bound to happen. Of course we intend to keep the all’s well going for as long as possible and hope to put this behind us soon. Sadly with Brain Tumors I don’t think you really get to live that life.
It has been a great weekend seeing everyone and just having a good party. We love to host and feel so comfortable in that environment. Next time, I am going to have a beer! And thank you all so very much for everything. I honestly cannot say that enough.
Tom’s surprise
Tom’s sister Anita designed these awesome shirts and they surprised Tom with them at the walk today. I got one too!!! Tom’s niece Nicole and her boyfriend Ty also joined us. We are so thankful they all journeyed from Spokane for the event! Mot is Tom spelled backwards and as his mom retold it on the phone tonight he was a little boy who wrote “Mot” all over the place, walls, etc. ❤️❤️❤️
Brain Tumor Walk Weekend
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!
Response to question, how much longer?
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!
Day 6 – All Trails “Slug” Challenge
Last weekend was derailed by my poor planning so we made sure to make it out this week. This should have been called the All Slug Challenge as there were so many slugs and snails on the trail you had to watch closely where you stepped to avoid them. We should have been counting slugs instead of dogs this whole time it would probably have been more interesting.
Again, we went out to Germantown road but this time we went on the north side. I had never been to the north of Germantown so most of this walk was new. It was very peaceful and an absolutely perfect morning. I think this was the first hike where it was a sunny day. Most mornings, thankfully, have been overcast and cool. In fear of it getting really hot like the last two days we wanted to get out early and beat some of that heat. Fortunately most hiking in Forest Park is shaded so it is never too hot. The trail head was packed indicating how popular this area is. The nice thing about the park is the size. It is so huge you never see that many people. Especially in the more remote areas.
Because of the All Trails Challenge we often do quick little out and backs to hit the lesser used trails. We have to hit ALL the trails so we end up backtracking a bit. This time we had a very short but steep out and back on Firelane 8. This was slug paradise. They were everywhere and they were huge. I have a couple of pictures below. The one on the tree was massive. I did not put my foot up there for scale but he was bigger than the one by my foot in the first picture.
We continued along Wildwood until the intersection of Firelane 10. Headed down Firelane 10, with a little diversion on Keyser Trail, until we got back to Germantown road. Did a quick crossing and up Cannon Trail back to the car. It was a relatively short hike but we had lots to get done today and thought this would be a nice quick section to knock out. I think we can wrap this area up with two LONG hikes in the coming weeks.
In the pictures below I had my first opportunities to take some shots with the sun dappled light creating some nice shadows; highlighting what I love about this park. I mean, seriously, where can you find such and awesome place right in the city? We have green all round us year round with these amazing trails. Each hike I wonder, who the heck made all these trails? (the photo of the Bruno Kolkowski memorial bench got me thinking about that this time) How and why was Forest Park even created? Who had the forethought to set this in place so many years ago. I never think of people from the 1800’s and early 1900’s as “nature lovers” or “environmentalists”. I always thought of them as “exploit the environment and bend to the will of man” types. Clearly I am wrong in that perception thanks to a few individuals that took it upon themselves to save areas for future use. Look at the national parks as an example. This curiosity about Forest Park has lead me to do a little research on the net. I have found some books and have them reserved at the library. As I find out new and interesting tidbits I will try and include them on these posts. Forest park is something special in Portland and seeing how this is a fundraiser for the Forest Park Conservancy so think about a donation if you have the means and interest -> DonateHere
In my preliminary research I found this article from the Oregon Encyclopedia on Forest Park -> Link
I wanted to highlight one point with an excerpt below:
The first person to recommend that the forested hills be made into a park was landscape architect John L. Olmsted, who developed a citywide plan for Portland in 1903 in conjunction with the upcoming 1905 Lewis and Clark Exposition. Olmsted, stepson of the famed landscape architect Frederick Law Olmsted, strongly recommended that the “romantic wooded hillsides” be preserved as parkland, saying, “It is true that some people look upon such woods merely as a troublesome encumbrance standing in the way of more profitable use, but future generations will not feel so and will bless the men who were wise enough to get such woods preserved.”
Looking back at what the Olmsted family did for this country and the amount of amazing parks and public spaces they had a hand in creating is stunning. All over this country in many major cities you can see their work; most done over 100 years ago. It would be interesting to talk to them about it now. Forest Park park is a great reminder of what makes Portland such a special place. It is the largest forested natural area in any city in the United States. BUT just because we have this amazing Forest Park, don’t move to Portland. We are getting to big for our infrastructure. Instead find an amazing place where you currently live and help make it great. I found a reference to a website (The Trust for Public Land) that ranks cities based on their public parks. What a fantastic resource -> ClickHere for the list. Portland is only ranked #6, Minneapolis is #1, St Paul #2 so move there. I hear it is beautiful in the winter, ay.
Here are a few more links about the park:
In the pictures this week I love the random small flowers and the hints of development in the park of times past. You can see where roads were, old water pipes, street lights, that ancient crumbling infrastructure from the turn of the century. Fun to see odd/random man made stuff in the middle of this forest. Also, I want to note, it is good to look up once in a while. The tree canopy with a blue sky in the background and sunlight making the leaves glow bright green is often overlooked. Plus, you can see all the moss on the trees, watch them sway in the wind, maybe see a critter or two. Such a different perspective from the endless vertical trees looking ahead or the winding of the brown dusty trail (or the slugs on the ground).
Looks like we got about three trail miles. Add a little section on the road to cross over, that is ballpark a tenth of a mile, and that puts us (according to map numbers) at 3.18 miles or so.
7/30/2016
my iPhone tracking -> http://cyclemeter.com/e270d94f4da916b7/Walk-20160730-0922
Day 6 – 1.5 hours and iPhone said 3.00 miles. I calculated 3.18 on the map so we will go with that.
Total – 27.17 of our now guestimated 100 miles so 27.17%
Total Dog Count: 4 more so now we are at 34
Total Time: 11 hours 32 minutes
Back to work
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.
If you are not part of the solution you are part of the problem.
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.
Thanks!!
Day 5 – All Trails Challenge
When the weekend hits we are off to the NW corner of Forest Park. There are so many trails out there and it takes a bit longer to get to so it is nice to have the extra time to drive out that way for a hike. We headed to the trailhead just across from Skyline Tavern. The only problem is, there is no parking up there except for the Tavern parking lot and it is plastered with no parking signs. We decided not to risk it even though it was early on a Sunday morning. We drove down German Town road to start at the bottom and work our way to the top and back. Again it was a nice overcast day so it was perfect hiking temperature. It sure would be nice if the summer was like this, nice cool mornings and warm afternoons. We started up Tolinda Trail to Waterline Trail, did a quick out and back on Wildwood (North) to knock out that section then up Waterline and back to finish it off. Once back to the Wildwood intersection we headed south to tie back into Springville road and completed the portion we started back on July 4th. All the way down to the St Johns bridge road then back our trail head off Germantown road.
All in all a nice day and quite a few people given the remoteness. But then with all the trailheads off Germantown it makes sense. Oh and it happened to be STP weekend (that is the Seattle to Portland bike ride) so we got to see a few TIRED cyclists rolling into town. Not that many interesting photo opportunities this time around.
my iPhone tracking -> http://cyclemeter.com/e270d94f4da916b7/Walk-20160717-0904?v=1
Day 5 – 2.5 hours and iPhone said 5.78 miles. I calculated 6.2 on the map so we will go with that.
Total – 23.99 of our now guestimated 100 miles so 23.99%
Total Dog Count: 10 more so now we are at 30
Total Time: 10 hours 2 minutes
