Lance Armstrong’s Missing Testicle

So yesterday was my first post in a while and I think it opened the flood gates.  I laid in bed thinking and writing in my head where everything sounds much better than when I actually sit and write it down.  Amazing how I can compose an entire book, memo, narrative, in my head but when I actually go to write it down and can barely remember a thing.  Honestly I bet I could be a fantastic writer if I did not have to do the actual physical writing and could just transcribe from my thoughts.  At least it seems pretty good while lying awake at night.

Then first thing when I woke up this morning I thought about Lance Armstrong and his testicular cancer.  Well, not exactly that but my train of thought took me there pretty quickly.  I think the steroids have made me pretty wired and sleeping is difficult now.  Plus once my thoughts get going and a noise distracts me I cannot stop.  The sprinklers were going and I could hear them so of course I fixated on them and could not block them out and then I started thinking and writing in my head and off I went, toss and turn and write for a couple of sleepless hours.  The big debate is should I just get up and write or should I fight it and try and get back to sleep.  I know I need the sleep and rest etc but when you are wide awake you cannot help it.

I am going to digress a minute because I want to explain something.  I sort have a lot to say and as I laid in bed I thought about lots of stuff and it would cause this to be an EPIC post.  So big I was thinking it would not fit on Facebook.  There had to be a limit to how much they would let you post.  I will try my best to break this up and cover the subjects I was thinking about because it will be much easier to digest and I don’t think I have time to sit and write it all out this morning.  Plus it was really good stuff in my head.  Once I mull it over it is probably fluffy drivel that I find so annoying on the internet.  Also, that is why I struggle a bit putting my thoughts into tangible words.  Do I really care to do this, do other people really care what I have to say just because I have a life changing disease.  There are lots of people that are going through what I am how am I any better, different, meaningful.  I mean, who really gives a shit what I have to say.  Maybe I should have gotten that philosophy minor in college but then who cares does it actually make a difference in anything.  No idea but I think it may help me sort some things out.  I spend WAY to much time on the internet but I cannot help it.  I am a curious person and like to learn.  Much of what I have read is the cathartic effects of writing.  I should just put this in a personal journal or something like that but then I would not get the Facebook accolades we so desire.  I think that is why I like the blog site a bit more.  I can just put it out there and it is what it is.  No FB feedback.

Now for a double digression to get to the point of what I started in the previous paragraph, my mind is like a butterfly, it just flits about taking me where ever it seems to go.  That is my life these days and my new life motto I guess.  Accomplishing a task is a herculean effort anymore.  I start something with the clear goal of completing it and the next thing I know I have learned how to build a mud hut on the island of Ibadu that is made from spit and bark of the Babunga tree.  Seriously I will have no idea how I got there nor what I was trying to do in the first place.  (That will lead to another post about Internet time and the exponential time suck).  There is so much going on inside my head anymore staying on task is practically impossible.  So, I am just a butterfly now.  Honestly I want to find a researcher and get them to name a new species of butterfly Digression.  Actually Surreal Digression, as most of my life seems so surreal anymore.  Surrealus Digressus would be a great name.

OK I could ramble along all day with this BS but I have to get back to the main topic here.  I will save my musings for other posts so I can be one of those other bloggers with a life changing disease that makes me philosophical thus have important things to say.

I have been watching the Tour de France and I think that made me think about Lance this morning.  Now he was not the first thing I thought of when I woke up.  It was really the results of my blood test from yesterday.  Each week they draw blood to check my levels and see if everything is hunky dory while under chemo treatment.  Yesterday I felt a bit weird as I was fairly light headed, a bit more dizzy than normal.  My feet would get sort of numb when I sat, if I got up quick I would get lite headed.  My calves have funny sensations.  What do you do when you have odd symptoms?  You go to the internet of course.   I start researching restless leg syndrome to see if maybe something like that is happening.  The steroids have really improved the muscle tics but my right calf still seems to be funky.  Of course that has me worried a bit as GBM’s make you more susceptible to blood clots in your legs.  I have always been pretty in-tune with my body so when something funky is going on I notice.  Plus I am now hyper aware of any abnormality.  The Doctors say that is really only a problem in sedate people and I am far from that but still when you have these weird twitches, feelings, sensations in your leg that do not seem to be going away you think about it – a lot.  When you go in for the blood draw they check your blood pressure.  I thought maybe it was too low as the symptoms I was having are similar to low blood pressure.  I have never really had low blood pressure I have always been sort of on the high side, 130/80.  Since the surgery I have been pretty normal 120/79 but the other day I was 113/seventy something.  I am rarely that low so I thought maybe it was BP.  But I was spot on at my appointment so that is not it.  That made me think of my blood this morning.  As I said my weekly blood draw is to check my blood cells and make sure they are staying in the normal range as the chemo inhibits the creation of all new cells in your body.  Blood cells are created regularly so the chemo has a big impact on them.  When I looked at my last two test results my “normal” range was on the lower side and in many cases was below the “normal” thresholds.  I could look back at my records from the days after surgery and saw I was low in most of the key areas other than white blood cells.  They were always in the good zone.  And that would make sense as I was healing from rather significant trauma.  (damn I take a long time to get to a point – sorry butterfly digression there)

So when I woke up I thought maybe my blood counts are getting low.  I have been trying to eat things that help you create blood cells but still not sure if it is making a difference or not.  That made me think of Lance.  When you get a disease there are SO many pills.  You take drugs to counter the affects of the other drugs, quite the vicious circle.  I hated taking an Advil if I had a headache and now I have a little old man pill kit loaded up with my morning pills, my afternoon chemo pills, my evening pills.  If my blood counts get low they will just give me medications to boost them.  I doubt it will be any performance enhancing drugs but you never know.  I am at the point where I am getting desensitized to all the drugs and the needle pokes and the oh you have this issue, take this drug to fix it.

The whole chemo radiation process it to try and kill/weaken the tumor cells.  The goal is to not let the treatment kill you so really you are fighting against the thing that is trying to save you from the bad thing trying to kill you in the first place.  That is a crazy thought.  So now you have this guy that is a pretty good bike racer and has some amazing potential in a situation where he is constantly getting jacked with drugs and can see how they “fix” the deficits that arise.  How can you blame him for not “using” them to “enhance” his performance.  These bike racers are amazing and some of the toughest guys out there.  Watching a guy smash into a rock wall at 30+ mph and get back on his bike and keep going is quite remarkable.  I have no idea what kind of physical torture they put themselves through.  I sure don’t have that ability inside of me.  Yah I ride my bike in circles on the weekends in the fall and make myself kinda sick doing it but it is nothing like what they do day in and day out.  Now I don’t really know all the details in the Lance Armstrong case.  It sounded like he was a real dick about a lot of it and that is why there was so much animosity against him.  I am sure he deserves it BUT he was still an amazing bike rider and I can understand a bit why the drug situation was easy for him to get into.

That was a whole lot of words to say how I thought about Lance Armstrong when I woke up but it also paints a picture of what is going on inside my head anymore.  Just a butterfly flitting about landing on random bits here and there. Plus I saved you from the epic post I created in my head that would probably be 5 times this long.  I will save some of those musings for later, if I can remember them.  They come and go pretty quickly anymore.

 

Day 4 – All Trails Challenge

So after our Day 3 adventure we wanted to wrap that area up.  Plus we wanted a quick and easy to get to hike and I was thinking of doing something short as I road the trainer for an hour while Jessie went to Dance Class in the morning.  We headed out at 3 in the afternoon to complete the Jay trail at the Audubon Society as we did not realized a when we were there on Wednesday that it did a full loop around the preserve.  It was a great trail and there was almost no one there.  The sun was out with a few puffy clouds and we had nice tree cover so it was still pretty cool.  When we were there the birds were away.  The center was still closed but Ruby, the local Turkey Vulture, was out.  So we got a better picture than Wednesday.   On the loop Jessie found a perfect tree to fit into and I found a nice clump to climb on (pictures below).

After completing our loop we headed across the street to Collins Sanctuary.  There are a couple of nice loop trails here with quite a few man made bridges to keep you out of the mud.  Jessie again was enamored with a tree and we found a monster slug.  This guy was a fatty (pictures below).  As we looped around and got onto Founder Trail we came into an area affectionately known as woodpecker alley.  There were some amazing trees here that had really cool patterns from the local woodpeckers looking for bugs.  Amazing to see what they can do to a tree. (pictures below)

Once we completed the Collins loop I wanted to call it done but Jessie wanted to keep going.  We had trails to hike!  Off to Upper Macleay trail and Pittock Mansion.  So up we went and it was such a beautiful day I could understand not wanting to stop.  After being in a place where we saw maybe 3 people the Wildwood trail was packed in comparison.  We diverted up the steeper Upper Macleay to bypass a large group that smelled like they were doused in perfume and would not move very fast.  Intersected with the Wildwood and continued up the hill to the parking lot at Pittock Mansion.  We then crossed the parking lot and headed down the Wildwood to the road.  We considered that good then headed up to walk the mansion grounds.

It is funny in the 11 years we have lived here we had never been to Pittock, now in less than a month we had been here twice.  It is really a magnificent place.  Do the tour once (and if you are a local you can get a pass from the library for 2 adults and 2 kids for free admission).  Then just come and visit the grounds.  They have some amazing plants and the view is stunning.  (see pictures below)

After our wonder around the mansion we headed back down and did a little loop out to one of the local neighborhoods on the Macleay trail.  That is one thing that makes Forest Park so fantastic.  There is trail access all over town and on many neighborhood streets.  I would love to have that access from my house.

Once back from our loop we tied into Wildwood and finished back at the Audubon Society parking lot where we started.

My iPhone tracking -> http://cyclemeter.com/e270d94f4da916b7/Walk-20160710-1506?v=1

Day 4 – 2 hours 45 minutes and iPhone said 5.99 miles.  I am not going to mess with trying to figure out the miles on three different areas on the mape to get a closer approximation so I am calling it at 6 miles.

Total – 17.79 of 80 miles but the backtracking issue % is jacked now.  We heard it was closer to 100 miles with backtracking so we will call it 17.79% complete (this is not scientifically complete).

Total Dog Count: 5 more so 20 (should have been counting slugs – as you can see below, Jessie wanted to get into the action)

Total Time: 7 hours and 32 minutes

Day 3 – All Trails Challenge

We had some great friends want to go for a hike with us so we knocked out another few miles on the all trails challenge.  Shawn, his fiance Dianne, and his daughter Hailey (she is featured below holding the salamanders).  It was actually very nice to go for a walk in the rain again.  We have had a fairly cold and cloudy July and that has been nice for the guy that is not a big fan of 80+ degree weather.  I prefer those 70 degree days.

The 5 of us met up at Lower MacLeay park and headed up the trail to the Audubon Society [audubonportland.org].  They have a nice bird hospital there where you can take injured birds to be rehabbed.  They also have a great learning center and some very nice trails.  If you go while they are open you can see several birds they have that cannot be released as they are too acclimated to humans.  Often they will have them out on display.

Lower MacLeay park is probably my most visited area in all of Forest Park as we just work down the street and it is a nice lunchtime escape.  I also spent two cold rainy days searching for one of the Cross Crusade Grail pieces in that park several years ago.  It was great fun but believe me I have looked behind every bush, structure, stream log, tree in a half mile radius.  I never found it.

The hike is great as it is a well defined trail that follows Balch creek up the hill to an old stone structure that was from an original settlement.  Known as the Stone House (Picture below with Jessie looking at some recent storm damage) it is a popular place to rest on the trail or for high school kids to smoke.  It is also where the Lower MacLeary trail officially ends and the Wildwood trail continues up the hill to the right.  We stopped for a few moments to explore and then headed up the hill.

Once we got to the Audubon Society we found it closed but we could still wander around on the trails.  As a change up we got a nice picture of a snail, Hailey with the salamander, some wild berries, AND the ever present Forest Park trail slug.  This time on the tree.

According to our iPhone mileage it was 4.33 miles.  When I added up from the map with some guestamation for the Audubon trails (based on their map) I get more like 5.02 miles.

 

Day 3 – about 2 hours and 5’ish miles.  BUT we are not sure if the Audubon trails count as part of the All Trails Challenge

http://cyclemeter.com/e270d94f4da916b7/Walk-20160707-1844?v=1

Total – 11.79 of 80 miles completed so about 14% done. BUT we had to backtrack down the trail we went up so that % is wrong.

Total Dog Count: 15 (still, no new dogs on this hike)

Total Time: 4 Hours 47 Minutes

Thanks to Shawn, Dianne, and Hailey for a nice evening stroll.

What do they say? No news is good news?

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.

Quick update and thanks

The steroid they gave Tom seems to be working and his spasms are decreasing in frequency and severity along with the dizziness, though he still has some of the dizziness. We are tentatively looking at a part-time return for him to work next week. Work in the morning-workout, then I will take him to radiation and he can rest in the afternoon. 
And again, thank you to everyone who has taken the time out of their busy lives to send texts, emails, messages, cards, phone calls, presents, come to visit, brought food, stayed in hotels to see us, helped in the yard, signed up for the Tumor walk and those who have donated. More thanks to those who have driven in our crazy traffic and construction to get to us and those who have reached out across time zones. I know cancer and hospitals really aren’t most people’s cup of tea, but it really means so much and really does wonders for our spirits that so many of you have shown your support and continue to be part of our lives during all this. Big thanks to Frank Enderle and Jeff Torgerson for making weekly visits-Endo for even helping get Tom to some of his appointments when I have work conflicts and Torgy for keeping me sane. You all are so appreciated!

6 weeks post op

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!

The Ketogenic Diet and You

We are two weeks officially into the Ketogenic diet today and it’s going fairly well but the carb cravings are making me a little nuts. Surprisingly not missing the alcohol much. I am down 5 lbs and the bigger victory is that Tom is not down any weight. This week I’ve traded a little variety in the meal plan for my sanity and since the recipes make 4 servings, we’re having leftovers. 🙂 I also tried my hand at ketogenic peanut butter cookies this week and they must have been edible as Tom downed 5 of them as soon as he discovered them. Most of the resources on this diet are geared toward losing weight (though it is also used to treat epilepsy and fight cancer) so we were fortunate to get a dietitian through OHSU as a resource who is helping to make sure Tom is still doing all the right things nutrition wise. The University of Michigan has a study going right now regarding this diet and Tom’s specific type of tumor (Glioblastoma) that we are reading up on. 
We saw Dr. Jerry again today. Honestly that man is the weekly dose of hope that we need in our lives right now. Love him. Nothing new really except he is attending a Glioblastoma conference this week and he also said he made a list of trials that he wants to bring to Portland. If he ever moves, we are going to follow him. That’s right folks, there is definitely a restraining order in our future. 
One final bit of good news. We got the results of Tom’s series of MRI’s and there is no evidence of tumor regrowth since the surgery. Big sigh of relief. He’s also doing really well so far with the chemo and radiation. 25 more treatments to go!

Team food baby update!

Team Food Baby Update:We have raised an incredible $1405 for the National Brain Tumor Society! Wow!!!!!! Thanks so much to all the generous people who have donated! Can you help us get to $1500 today? There’s still plenty of time to join the walk or donate! I set up a separate group-Team Food Baby on Facebook if anyone wants to join. We are currently coordinating one of the next two weekends for a team BBQ and viewing of the movie Juno. Here’s the team link to join or donate. If you want to join the FB group for our walking team, send a request to the group. If not on FB, send me an email at jessica.kincaid1@gmail.com and I will keep you updated on team events.

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

Heads up for visitors!

Heads up for visitors!!! They are doing construction around our place at least for the next week so your best bet to avoid is to come in from the south on Gaarde and then turn onto 121st. Thanks to everyone who has come to see us or meet up with us! You are all wonderful and appreciated! We are pretty open in upcoming weeks so if you want to see us suggest a date or two that works for you!

Day Two – Radiation with Pictures

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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