Reflection

I can't help but feel cheated, cheated on life. Cheated on all of the memories that I will never be able to create with family and friends due to my struggle with cancer.

From time spent in hospitals, recovery at home, doctor's appointments, therapists, therapy, MRIs, medication bills, losing my license multiple times, 100's of seizures and the financial impact this has had on my family. This does not include any of physical, mental side effects and pain I have endured fighting this disease. It has changed me.

Fay, I am so sorry this happened to us. You probably do, and should, feel cheated as well. I am not the husband you fell in love with and I would do anything to change it all. I am so sorry for some of the things you have witnessed and images that have been burned into your mind. To wonder when my next seizure will come or when the tumor will come back. You have to worry about things that most people will never face.

This is the true damage of brain cancer, especially Oligodendroglioma;s as they unfortunately almost always reoccur. Because surgery didn't remove all of it, it will keep coming back until it eventually it kills me.

It is tough to think about recurrence but it never leaves my mind. I had my first surgery at the end of the year in 2004, MRI showed growth just 3 years later in 2007 which I fought with 12 months of chemo. Then in 2011, I had my second surgery. The next time it returned was in 2015, when I decided to be very aggressive with treatment: surgeries, radiation and one more year of chemo. All this time still suffering from seizures. My family and I deal with the pain and suffering in our own ways and we have been impacted from that first day.

I sit and reflect what next year will bring. I have fewer options than before. My brain is such a mess that without causing serious deficits, additional surgeries are no longer an option. This leaves me with another round of chemo, which loses it effectiveness every time and another go of targeted radiation that will likely cause additional damage.

For the last 5,339 days since that first seizure, I make it through each day and I end every night scared of what will happen next.  Will this be the day I have another seizure, how many more days until my tumor comes back stronger. A portion remains in my motor cortex which controls the right side of my body. Along with all of these concerns I am now hyper aware of every time I feel anything out of the ordinary on my right side.

I will continue to fight this every day but I can't say it is always easy. It is not. It is difficult having this the first thing you think about and your last thought. The not knowing what is next is the worst feeling of all. It is physically and emotionally draining.

I have, through no fault of my own put my family through hell. I will "celebrate" 15 years as a survivor Dec. 17th this year and while I think I dedicated 100% of my energy just pushing through each day, as best I can, I can't help to think about what could have been. Cancer has destroyed my life...

14 Years

Still kicking....

Better late than never

Suck's I didn't get to taste the cake Fay made for me....I spent that night and the next few days in the worst hospital ever. Thankfully, not brain tumor related and all is back to normal.

12 fucking years....

Stable

That counts as stable? Take your word for it doctor. Win either way!

Long over due....again.....

No news is good news.  Hosted a bunch of Streetboarders at our house in May, short trip to Barcelona in June and a trip to Japan, again, with Dylan in July.  You can follow our adventure on our two Instagram accounts. 

Family account  and  My Instagram Account

Otherwise just been super tired. I've been taking an hour nap in my car during lunch during the week. I have another MRI and see the DR. in two weeks so hopefully we will figure things out.

We will be at volunteering at the Silicon Valley Brain Tumor walk on Sept. 10th next Saturday so if you are in the area feel free to join us.

 http://www.braintumorcommunity.org/site/TR/TeamraiserEvents/SiliconValleyBrainTumorWalk   

Mt. Fuji Summit, Approx. ~4:30am

Moved to tears...

Damn-it.... forgot to publish this.....  Long overdue....  this was scheduled to post on June 16th of last year....




Your network of friends used to be within a 5 mile radius when we were younger. No computers, no internet and only a single home phone, connected by a chord no less, that if it was busy you were out of luck until they were off the phone. The world is a much smaller place now and my network of friends reaches all over the world.

I've been around the world with "my streetboarding family". China, Spain, England, France, Japan and more. We're always having such fun and it's like we have never been apart. Skating and hanging out like we see each other every day

Little background: Streetboarding is most similar to snowboarding. In that you are connected to the board via bindings. You can check out some of Colin's and Christian's edits.

I've known "Bob" (Ismael Calvo) for more about 15 years. He's was a rider for Dimension Streetboards since the beginning (aside from 10 or so years since I have kicked him off the team in Spain...). He call's Chile home but spends a good deal of time traveling and skating with his friends.

I was in San Francisco with Ismael and friends about 1 year ago. Just as I was recovering from another battle of my own. Bob was determined to 5-0 a huge rail and it didn't end well. I have never witnessed a crash this bad, I seriously thought he broke his back. (4th slam in the intro). To this day I'm grateful and amazed that he can walk, let alone skate.

When we are together he is always asking me "what keeps you moving forward". I don't know really, family and friends. I do know that others are in worse situations than me and for that I am grateful.

If I had to describe Bob's skating in just a few words it would be: Dedication and Style. The video below show's you what I mean. I didn't know that Ismael was working on a video until the "coming soon" video came out like a week ago and since it's been released I have probably watched it at least 100 times.

Thanks Bob for continually pushing Streetboarding forward but for the kind and thoughtful ending. It brought tears to my eyes.

Ismael Calvo - Strap In To Live from Colin Horan on Vimeo.

Go Grey in May

Im done. Officially done with 12 months of Chemo.

New Year - New Outlook

Can't believe its a New Year!  Exactly 365 days since my surgery last year.

2015 was a year that challenged me like no other, but here I am, starting my tenth month of chemo. I'm "carpet bombing" my system for 5 days straight then taking 23 days to recover. Just as I'm starting to feel better, with more energy, I start another round. Only 2 more months to go and then I'm officially done. 

Rosicrucian Peace Garden 

I've promised myself to spend a lot more time with family, with friends and just having a more positive outlook on everything. I have my days, like everyone, but I hope to keep my stress level in check and just focus on enjoying each day. 

New Year, new job (still at the Bank) and new outlook. Going to try to enjoy the little things... 

Happy New Year

Long overdue...

This post is a long overdue update and I'm not sure who even checks this blog anymore. I'm doing OK, back at work since July 1st, and currently on my 6 of 12 months chemo cycle. Oh - I'm tired by the way, crazy tired and not working out as much as I want to, but overall I'm fine. Did I mention I'm tired?

In search of skipping rocks

Oh, the challenge I made with Adam to race a half marathon this year....yea, that's not going to happen! Next year, I challenge you to walking casino to casino in Vegas - Deal?

The Silicon Brain Tumor Walk was September 26th. I took Hayden on an early morning walk, around the only lake with water in San Jose, while Dylan, Quinn and a good friend, Adam, volunteered to help set up the event site. After skipping rocks with Hayden, I went to the car and napped (that's how exhausted I've been).

It was good catching up with old friends that I haven't seen in the past few years. One of my Brain Tumor Friends (BTF?) was in the Army stationed in Saudi Arabia when in February 2011 he woke up with a terrible headache and had trouble putting on his belt. He had surgery in Germany and back at Stanford to deal with the standard and ever changing level of care for a (GBM).

2012 Walk in S.F.

Another BTF family was at the walk, Team EveryDayLeftRightLeft, Karyn, who unfortunately was also diagnosed with a GBM 4. We met through our kids soccer team. I encourage you to read her blog here --> www.everydayleft.com

Before the walk they call all of the brain tumor survivors for several pictures up on stage together. This was the first time that I actually said to my
wife that I don't want to go up there. I didn't belong. I've had 5 brain surgeries, radiation, broken neck, been on chemo twice and still struggle with seizures and I just didn't fit in. But, she made me go up on stage.

I'm coming up on 11 years of survival from this disease. I've put in a pretty good fight. Don't get me wrong, I've had a few set backs along the way, yet here I am. I can spend time with my family, travel, skate, work and enjoy all my wonderful tumor and tumor free friends. 

Feeling very fortunate, lucky, in good hands, whatever you call it, I'm grateful. 

Hospital Stay Recap - Josh's Perspective

FYI: This is a long post and is not an update, but instead, my perspective on my hospital stay. I think Fay covered it well from an outside perspective but I would like to cover it from a patient's view. REMINDER: The plan was to implant electrodes on my brain, remove me from my seizure meds, induce a seizure, then remove the tumor and seizure focus site(s) one week later. That was the plan. Click to enlarge any pictures..

Day 1:  I remember everything up to "goodbye Fay". The next thing I remember is throwing up from the anesthesia. I recall telling the anesthesiologist that I have not had issues in the past - I spoke too soon. I faded in and out of consciousness. Really, Day 1 is a blur.

Day 2: I recall very little except the pain part. I remember waking up in extreme pain. I was screaming, "get this thing out of my head!". It was the most horrendous pain imaginable. Despite all the discussing, planning and scheduling that was done for this whole ordeal, I wanted the electrodes out of my fucking brain or I wanted to die.

I had gathered great attention in my room as my pain level was spiraling out of control. Thankfully, my wife was there to handle the situation. I was in too much pain to tell what was going on. I was only aware of the pain and faces of everyone in the room. Next thing I know, I wake up in a much better mood and WAY less pain. I was transferred into my own room on the Epilepsy Ward, I ate my first solid foods and I was feeling relatively good. Finally, the pain was under control. Looking back this would be my worst day in the hospital by FAR.

Day 3:  Again Day 3 was a blur - actually I don't remember it at all. Another surgery....an emergency surgery that I would know nothing about until later on day 4.

Day 4: The first thing I recall was waking up, maybe mid day. I wasn't aware that I had had another surgery. Apparently I had a few late night seizures on Day 3. I was later told by Fay that I had had a CT scan because my condition had been declining. The scan showed that I had bleeding and it was causing pressure on my brain. This pressure was causing my symptoms. I remember earlier in the day the doctors coming in from time to time to discuss how I was doing and performing some tests but, they failed to mention I had had another brain surgery! AND have another scar.

Day 5:  This was the day that they ran tests while they stimulated areas of my brain using the electrodes. The day they were trying to gather information in order to map my surgery. I only remember the set-up and maybe about the first 30 minutes. I'm guessing it was the large amount of Ativan they were giving me via IV as the reason I didn't recall the entire test. They decided to give me Ativan because there was so much activity (brain noise) that it was making it difficult to record the info they needed.

They had me read while they stimulated different areas of my brain. I WISH I could remember all of the tests and explain it to everyone. Actually, I wish I had the forethought to video it. It was an amazing process. At one point, they had me repeat phrases and one was, "beer and pizza" and I could actually taste it as I said it. The taste was so real - it was crazy. Like I was sitting down at a pizza parlor. Fay was allowed to watch the entire testing. She said she wanted to tell them to stop and that it was enough. She said it was very long and very intense. She felt like they were torturing me and kept telling me to wake up. It lasted nearly 4 hours.

Day 6 & 7: Are the only days I truly recall vividly. My pain was pretty well manged with my medication schedule. These were mostly rest days. I remember Julie and Chris coming by for a visit with some food. My Dad, Aunt and Uncle dropped by. I also remember, by this point, that I was getting extremely frustrated by the straps on my arms. Not only did I have restraints on my wrists but I also had a chest shirt (straight jacket) that was totally limiting my movement. I just wanted to move so badly.... Just for a minute to lay on my stomach, turn on my side, sit in a chair. Anything other than the position I was in. I wasn't allowed!!!

Rhonda and Tom brought Hayden for a visit on Sunday! We had a nice lunch together. I was surprised at how well he did. Even though three nurses worked on making me look kid friendly, I know I looked crazy with all my bandages.

Day 8: The day of the third brain surgery. The day of the removal the electrodes, the tumor and the seizure focus sight. I was trying to stay calm as I waited. I was scheduled to be the first surgery of the day but, it got pushed back. The waiting was awful.

This time I remember being taken into the surgery room where my brain was about to be opened. They moved me from the hospital bed to the operating table. I remember thinking that this was a lot smaller table than I expected. They strapped me down and I remember A LOT of people moving and talking. An oxygen mask was put on my face and I was told to relax and breathe deeply. That's its...that's all I recall. I don't think it is standard process to be put to sleep in the actual Operating Room so this was a first experience for me. Or maybe it is standard and this time I just remembered it. Again, after that I was in the ICU for the day so I don't really remember much.

 Day 9:  This was the day I was officially removed from my "straight jacket" and wrist restraints! The doctors didn't feel that I was a seizure risk anymore. I was also in a shared (tiny!) room! Ugh!  Physical therapy had just started. I remember walking up and down the hall in extreme pain but, I was actually up and walking! Note: One day after brain surgery! I also had a new baseline MRI as well.

I had a visit from Dr. Chang and my most important question was, "how did the surgery go and when can I get the hell out of here!?"

I put huge effort into completing the 4 tasks on the "Discharge Checklist". I wanted the hell out of the hospital.

Day 10: I went home one day earlier than expected since I was up and walking and my pain was mostly under control. Recovery at home would be more difficult and longer than I have experienced, but at least I'd be at home.

1. During the time in the hospital I was asked the following questions either hourly or every other hour. Regardless of the hour and regardless if I was asleep. Do you know where you are? What reason? The date? Who's the President? What's your birthday?, etc. - one time answering with the question "Do you know why you are here? I answered "Crani-fucking-otomy"

2. The neurological tests were completed every few hours as well. Even waking me up if I was sleeping.  Those were the most frustrating. They would ask me to use my right hand even though I could barley move my right arm.


3. Drugs: They gave me a lot of them: Anethesia,  percoset, Ativan, Keppra and on and on.  The Ativan via IV had an immediate effect that would "calm" my brain down. It also put me in a comatose state and make me excessively tired. So tired that I don't remember ever getting it.   Fay and Rhonda have a lot of stuff to hold over me for the Anethesia and the times when I was really out of it. I guess I was saying some crazy stuff. Unfortunately, Fay found this part really scary. I was also taking Percosot every 4 hours for the pain.


3. Fenabarbatyl, well that was a different story. They would only allow me to take so much Percoset in a 24 hour period. So in between this time when I had to be held over I would take an IV of fentalyne to hold me over. This stuff was strong, too strong in a way. I don't recall this drug from having prior surgeries. It would kick in immediately and would make me start hallucinating about 10 minutes later. I clearly remember in my MRI on Day 9 seeing rabbits eating carrots in a field and rainbows overhead. Note: The rabbits were standing like humans and talking!

*********
The reason I have done so well, the only reason, is the support of family and friends. If I didn't have that I wouldn't have pushed so hard to recover. Now I've completed Radiation, physical, speech and occupational therapy sessions and I'm up and running again.

I'll be going back to work on July 1st, and aside from the Chemo for the next 12 months I'm 99% recovered! I can't thank you all enough for the positive impact you have had on my recovery and to the support you have provided to my family.

THANK YOU

Chemo Starts Tonight

My yearlong course of Chemotherapy starts tonight. I had an MRI today, blood work, and we met with my Oncologist today. The MRI looked fine and the lab tests are normal so I am clear to start the Temodar tonight.

What's Going On...

The Chemotherapy arrived in the mail. Josh's yearlong course begins on Tuesday, May 27th.

It's kind of ironic because today is the first day that he has NOT napped since starting Radiation.  

The Chemotherapy will cause fatigue.

He just started feeling well enough to start on a home improvement project. It started out to be a little fixing up in the office but has turned out to be a major project. A lot more than he expected!

We haven't been updating the Blog lately. I'm not sure why Josh hasn't, but I know that I haven't because after our last visit with his Neuro Oncologist, I felt discouraged. Every time we go there, I come out feeling like I got blind-sided with a punch to the gut. This time, we were told that because the tumor has grown into the Motor Cortex, it is probable that Josh will have right side deficits in the future. We knew that the tumor had reached this area and that it was unsafe to surgically remove anymore of it but, I had not expected to hear this bit of detail. I understand that the purpose of  Radiation and Chemotherapy is to slow the growth of the tumor that was left behind. But still, after surgery, 6 weeks of radiation, and a year of chemo, it's scary to hear that this is still the prognosis. He went through and is going through all of this and still...

So, that's why I haven't felt up to an update.

Amazingly, Josh has been doing well. Aside from the news from the doctor and feeling exhausted, his mood is good. He's keeping active and hoping to take a trip before he starts back at work. By the way, his hair still hasn't started growing back. 

I keep waiting to see a Blog post from him.

I remember this stuff...DO NOT Touch!

 

Radiation Mask - Smash That Mask! (Video)

Stanford Brain Tumor Support Group

I've gone to more than my share of brain tumor support groups. I haven't really been that much the last few months because of that last few months because of schedules issues but I do get a benefit from it. Just hearing the group talk about how they deal with seizures, or their tumor gives me a great perspective. 

The only heart wrenching thing is the sheer number of "turnover" in the group. I sometimes feel bad that I have so far, and continue to be, so relatively unaffected by this horrible disise. 

I went tonight to touch base with all those in the group that I haven't seen in awhile. I'm not sure if this is a good thing but the support group has grown quite a bit since the last time I have gone.

The facilitators of this group, Sharon and Joanie are kind enough to hold this meeting every month. Sharon is a retired UCSF nurse and Joanie is a retired Kaiser nurse. The support group is hosted by the surgeon who has opened my brain a handful of times, Dr. Chang. 

It was nice to catch up with some old friends and I hope to return to this group regularly once I am through my recovery.

What's Up...

Jett takes a swing at the mask

Some friends gathered and celebrated the end of my radiation treatment with me this weekend. And, my radiation mask was hung like a pinata. The kids had fun smashing it with a bat and it finally broke. The next birthday party we have I plan to just hang up any plastic item from a tree, give the kids a bat and let them go. It was hours of fun for the kids. 

I was surprised with a special performance by both Adam and Enzo. Lola made a "pin the tail on the brain tumor" game. It was great to relax and celebrate. 

Thanks for all the support Team Mick received. As of now, the 2015 Brain Tumor Event raised over $400,000 which will help fund brain tumor research. Thanks to those who were able to join us for the walk and for all of the generous donations.

This Friday, we're meeting with my Neuro Oncologist to discuss my chemotherapy plan. And, in a couple of weeks I am scheduled for my first post radiation MRI.

I'm still tired and taking naps during the day but the worst of my recovery is, thankfully, behind me!!!

Kids having fun on the trampoline

Adam 

Lola

Enzo

Walking Today to Honor & Remember

It's Over

Radiation is officially over! 30 for 30. Done! I'm still so tired and without my hair but, we won't be making the daily drive to Stanford. Guess what!? The grand opening of the Stanford Cancer Treatment Center is in July...in San Jose. Turns out I missed being radiated in my hometown by weeks.

I guess I was expecting to feel excited, different on the final session. I felt the same as I did for 30 days - I felt nothing as I laid there. Though it feels damn good to know I don't have to go tomorrow.

The Radiology Technicians were so wonderful. It almost makes me want to go back to visit them. Almost...

The fatigue is expected to last at least a month more. In about a week, my head should start to peel. I'm really hoping my hair grows back.
The next step is Chemotherapy. But, I'm looking forward to a break first. 

My brother-in-law summed it up well... "Congratulations? Is that really what you wanted? It's like congratulating you on having a tumor. I'm so glad it's over though." You have to know him to know this was a really sweet comment!