Tag: cancer

Where to from here?

March 14, 2015
I’m in the purgatory of the cancer world. They call it remission. So I’m in remission waiting to be declared cured.

Where does life take me from here on out?

Not really sure what today holds. To be honest I’m not sure what this life holds. In the last 12 months I have come down with cancer, fought cancer, and as I sit today my cancer is in remission. Sure it took 6 months of traveling back and forth to Houston and putting a lot on hold, but now looking back on the journey it seems too easy. Is this it? Is getting rid of cancer this easy? If that is how it works then what do I do now? A marathon race, triathlon, Everest? Feeling like superman but with the need to go out there and kick ass.

The folks who have supported me and my family during my cancer fight have propelled my ego into rock star status. When I would blog, or talk people instead. I feel like I need to continue on and provide more content about my life.

Cancer has jacked with my head. I find my self looking for the bigger purpose in life. Ridding my bicycle seems to take the mind off of my purpose. I have list upon list of things I need to do but I want to rip them up and go ride. I want to ride, and ride and ride. Ride from here to there where “there” is more than a few hundred miles away. I want nature and bare bones living more and more. Sure as I’m typing this up I’m 25,000 feet in the air riding to Florida on a trip to Costa Rica. I have headphones in listening to a book about 2 ladies and their journey from the West coast to the East coast. So I have a laptop and a phone running audibles talking about simplifying life. Does it make since to you? Yea me neither. I wish to be connected and disconnected at the same time. My work can’t be done without the tools of a digital camera and computer. How could I do work if I get rid of the digital devices? How could you read what I have to type if I give it up.

I have a dream:
Today my dream is tied up to a 300 mile bike ride from south Arizona to Phoenix. The concept of being able to traverse over a long distance while taking care of self and bike to reach a destination at the end of rough/beautiful territory. Sure some scratch their heads and say “I’ve been to Arizona and there is nothing beautiful about it!” but like west Texas’ Big Bend Country, you love it or hate it. The summer before my freshman year in High-school I spent a week in Tempe, AZ. I remember it as 100 plus degrees 100% of time. That was when the monsoons were not sweeping small cars into the flood channels. It could be the brutal weather, the rattlesnakes, or the prickly desert floor, but I think a 300 mile bike race in the rough back country would be perfect for me at this point in life.

So once I get things in order at home and at work I hope to be out on the trail beating life. The start will be the Arizona trail, then the Colorado 500, and then the biggie on the list will be the Tour Divide. That is the race from Banff Canada to Antelope Wells, New Mexico. It runs for over 2,700 miles and would be 25+ days in the saddle.

I’m still working on this post cancer life of mine. I will let you know how it is going.

-Derrick

Wanting to ride and camp in the wilderness – Rookie

Posted by Perrin Derrick On F j, Y

Rookie Derrick Perrin here. I’m starting my first season of riding long distances on a mountain bike packed with wilderness camping gear. I’m going to short list my reasons for having a passion for bike-packing and then write you out a few run-on sentences with a lot of spelling/grammar errors.

Reasons to ride ultra marathon wilderness mountain bike races:

Watch Ride the Divide June 2014 and was excited to ride ultra races. Bought a bike 15 days later. Was diagnosed with cancer 2 months later.
Riding for James, Label bike TOKC
Figuring out what to do next – how is life post cancer work out?
What money goes for – Awareness & education
I have never set goals and now I am.
What if I fail? Pick up the pieces and keep moving in a positive direction

The bike broke me, the bike fix me. That is the book theme here.

Overnight I had so much attention I felt like I was a rock-star. Only I was a rock star without a band and a tour bus and groupies, no only thing I had was cancer.

Derrick Perrin at the observation deck at M.D. Anderson – Houston, Texas

September 2014 I’m sitting in a hospital bed at MD Anderson and my charge nurse pops in the room with “Oh is this your first time for Chemotherapy?”

Yes, I’m a rookie. Quickly ideas of never wanting to be a veteran here at 1515 Holcomb lane arrive. This is the first of 5 days of my first round of Lymphoma treatments.

I was treated great, but I felt like a rookie. Growing up playing youth sports the feeling of rookie had come and gone several times. Those times if you screwed up or didn’t get it right people laughed or teased you, but as I sit in a hospital with cancer there were was no time to mess things up. I was out to get it right.

I was diagnosed with cancer towards the end of August 2014. The 12 months before my right hip had been giving me troubles. Time and time again I shrugged it off and took more over the counter painkillers. They did the job and kept the pain under control. After long days on the job I would have extra pain, but thought it was muscular or a structural issues. I never thought for once it was cancer. Well, I take that back. After looking up my symptoms on doctor diagnosis website I read it might be cancer. This was supported by a friend of mine who had recently passed. She was younger than me and ran into some hip pain. She was crazy active and the owner of a Zumba fitness studio. That is the equivalent of salsa – yoga dancing for the uninformed. So after a few years fight she passed and then my hip pain set in. It was easy to blow off the cancer concept due to the fact I’m 10 foot tall and bulletproof… I had been up to this point.

My entire life I had been active and this hip thing was hurting my activities. I went to my general doctor only to get a pill that worked worse than I what I was already on. I iced, foam rolled, had professional massage appointments, multiple trips to the chiropractor over weeks and weeks. I never seemed to get any better. Things did get worse. After long shooting days I would crawl to bed or use the dirty clothes bin as an ole-lady walker. It was painful, but I didn’t have cancer. I figured it was just a muscle issue because that is what the orthopedic specialist said it would probably be. He made a list from most likely to not very likely and cancer was not on that list. The items listed where:

Torn Left Hip labrum
Muscular tear or strain
bursitis
arthritis

Like I mentioned before, no where did my orthopedic doctor mention cancer. He did want me to get a MRI with a cortisone shot. I put it off thinking a torn labium was the problem and I could not schedule a surgery for months and there is no use looking at my inner bits without the opportunity for surgery. I continued my life of massage therapy to remove my knotted up muscles. I also quit running and started looking for a bicycle. I found one on my wife’s birthday in June 2014. I got on it and rode for double digit miles the first day. I was so excited I had an activity that didn’t piss off my hip. The freedom of getting on and losing the pain that came with walking was great.
Two months passed and my hip was no better and no worse. I had really enjoyed my time on the bike. It had been years since some asshole took mine and rode off into the sunset. That had to look fun being most folks around my parts don’t fit on a XL bicycle frame. Yes, I’m still working on that forgiveness thing. I don’t have it down quite yet. So I was out riding at night and I found a cool little ditch to practice shifting gears quick and pulling myself out of a hole. I was super cool up to the tipping point. I came up the side at a diagonal and missed a gear shift sending me toppling right. If it would have been my left side I would have just stuck out my leg and rolled back a bit, but it was my right side. My right hip was the injured hip and made it hard to throw one leg over my bike frame to get on. I was babying it and didn’t know it till I landed on my hip and crash, boom, bang there was a crap load of pain. I was lying at the bottom of a ditch with my beloved bike frame on top of me. There is some sort of metaphor there but I just don’t know what to read of it.
I made it 3 days before I dug up my MRI orders. It was 93 days passed the prescription date and I had to call the orthopedic office to reschedule. I was ready for answers but wasn’t sure about the cortisone shot. After weighing the options I went with it. It was August 21, 2015 when I walked into my local radiologist shop. The shot and scan were easy going. This MRI would be my first ride in the big doughnut, but not my last. I tried to scan the screen right after my MRI and see if I could see a labium tear or anything else. I saw nothing out of the ordinary and figured I would be feeling better once the shot kicked in. I was right, the next few days brought me relief that had been on vacation for a while.
The weekend came and went and on my hip started to feel better but not perfect. I really wanted my radiology report so I called and dropped by for a copy. I ran out to the car to see what my problem was. I read it twice before falling into tears. Right acetabular fracture and also a mass” we some of the first things I gathered from the notes. I then came across this little gem of life changing information, “ Given the patient’s age and appearance, differential considerations would be led with multiple myeloma/plasmacytoma, lymphoma or sarcoma.” Well crap Lymphoma is what Zumba Christina had and I had just attended funeral services for my friend James Ragan who lost his fight with osteosarcoma. I knew the hill I was facing was huge when I looked up myeloma/plasmacytoma and it pretty much told me to go write up my will.
The next 72 hours were a train wreck at best. Sleepless nights, blog post, my self imposed Facebook prohibition was lifted and the prayers began. We drove to Wimberley Texas to visit one of my new doctors and while we were there James Ragan’s mom called and let me know my ass needed to be at MD Anderson by 6:30 the next morning. So we stopped off at picked up some clothing and a toothbrush between San Marcos and Houston. We arrived around 4 and I found a nice place to sleep before labs opened. From that day on I learned that cancer had more to do with hurdles tossed in your way than with simply taking some medication that might kill you if the cancer didn’t get you first.

If it would not have been for the Ragan family and their involvement with MD Anderson I would not have been in their care so fast. There is a reason God put them in my life.

As I went thru chemo treatment I kept riding my bike. My oncologist and mom would talk about my safety and ability to ride a bike. He said it was okay for me to go and push as hard as I can. So that is what I want to do. I did a lot of research on what it took mentally and physically. I also read a lot of trail reports on what gear is must have and what can be left behind. I don’t mind being a rookie on a bike. I’m looking forward to it. I figure I have been in and out of a lot fighting cancer. My mentally is stronger at a cost of leaving my physical weaker.

I was receiving chemotherapy at the same time I was trying to heal my fractured hip bone. My doctor had one concern and that was for me to not die from lymphoma. He didn’t really care if I could walk right or how well my hip healed. All subsequent MRI scans show a star style bone reconstruction. I have stuck with my bike and with yoga as my 2 main rehab activities. The yoga keeps me limber, the bike keeps me sane.

Sure I would love to go out in the wilderness and disappear for a few days in the back country, but there are a lot of things that have to be done for that to happen.

In between, and during many of my chemotherapy rounds I would get on my bike and ride. You don’t get to think about much but the bike when you are on a ride. The brain is functioning on balance and direction when the lungs and muscles are trying to reach a happy medium of converting oxygen to carbon dioxide. Its really a great feeling to ride a bike.

This is the trailer for the film that first perked my love of bike packing. One day I would love to have the chance to ride the Tour Divide. Between now and then I would love to start off my rookie season by riding the AZT 300, CTR 500, and then come back the next year for the AZT750. That would be a hell of a rookie season.

-Derrick

The Big Spill

Posted by Perrin Derrick On F j, Y

“Hey honey, hey, hey” I say to Kendra as I try to gently wake her up on what is setup to be a very crappy Monday. “Please don’t roll over, don’t lay in this” I’m trying to be gentle by alerting Kendra that there is a pool of chemotherapy in our bed. This is not a pool she wants to go swimming in.

October 2014 – My first chemo outpatient experience came with a chemotherapy spill kit. That was right before Halloween and there was a lot of joking about me wearing it as a costume. Its a full blue gown with face mask and 2 sets of gloves. We passed due to the Ebola scare and the fact we might need it one day. Today is the day.

When I was getting my first bag exchange on round 2 the nurse jumped my ass saying

Don’t pull to hard, we want the chemotherapy in you and not on you. That would be a very bad thing to happen!

Now Time 2014 – All joking aside Its Monday morning and I have been laying in chemo for over 2 hours. We scramble to crack open the Halloween chemo spill kit and find out what can be done to stop today. We looked long and hard for the mini time machine but neither one of us found it. That is really what we need right now is a time machine so we could step back and stop the spill before it starts. Damn, no time machine. Next step, read the instructions and find out what we have gotten our-self into. In the chemo spill kit there were bags for the bags that your contaminated gear goes in. Those two bags fit into another large bag. The large bag is yellow and has scary looking logos on it. These are the type of bags that would be fun to fill with leaves and leave on your neighbors front porch for April Fools day. This is not a bag you want to fill up with your bedding and chemo pumps and head to the hospital with. This is a bag you want to burn in a bonfire.

I have ran these drugs for over 300 hours. Same bags, same drugs, same sleeping arrangement… Why did my system leak today?

So I head out to the hospital with my yellow Santa bag and am very surprised by my access to walking through the entire complex with a contaminated bag. They check me in, hand me my pager and let me sit in the main lobby for 30 minutes. Once the pager rings I’m escorted to a door I didn’t know existed. I’m placed in a room down the hall behind the door I didn’t know existed. I’m escorted to a room with a bed and a chair. I’m instructed to not sit on the bed.

So here I am sitting in the chemo-spill-chair waiting.

While I wait there is an 8 year old girl crying down the hall. She is hooked up and not happy. Well little girl I’m about to be hooked back up and not happy either. I say a little prayer for you and your family. It hurts like hell to see something like cancer happen to folks that are so young. I’m quickly reminded I have it a lot better than she does. Although this morning sucks ass I’m going back to my beautiful family, home, and business in the next 48 hours. I have a clean pet scan and life is good. I have not seen a unicorn or a rainbow today but that doesn’t mean I’m not going to stop looking for them. God got me up early today for a reason. I’ve got to find out what I can do with this beautiful day.

So my nurse is at communication central talking to my doctor, a pharmacist, the nurse and the nurse’s nurse to see what we can do. Since the “time machine” and the “loss of chemo measurement device” were not present in the chemotherapy spill kit we don’t really know how much chemo was pumped into my bed and not me. So we will restart my chemotherapy bag soon and reset the time to when I found out it was leaking. I was scheduled to complete this round of chemotherapy at 11pm tonight. The post-spill schedule has me ending this bag at 6am in the morning and then taking an hour and a half break before I get my last 1 hour bag. This is bad, really really bad. This protocol runs for 101 hours beginning to end…. but not this time. with my 2 breaks we are looking at a 109 hour run with breaks of potency. The concept here was to run a high potency for a length of time so it kills cells over that length of time without wavering. Solid poison over a solid amount of time and not ups and downs. That is what I signed up for but will not be getting. Side note: the chemo left in the bags will need to be tossed out. That is over $800 of drugs down the drain due to a faulty $3 rubber tube connector.

So Thanksgiving week is off to a rough start. By the end of the week I will celebrate my 37th birthday and follow up the next day by videotaping a beautiful wedding. Things are looking to get better and better. Hell they have to after a morning like this. As I complete this post I’m laughing at the situation. It was laugh or cry and laughing just felt better.

Take care, & thanks for your prayers

Derrick Perrin

No Dee, not you.

Posted by Perrin Derrick On F j, Y

In between my rounds of chemotherapy my family and I would return home in Corpus Christi. From finish to the next start we would get about 14 days at home. These days were strange. You would try to work on the list of things to do you created in Houston. Cancer has a nasty way of kicking you while you are down. You come home to broken cars, water leaks, or pissed off clients who don’t understand what is happening to your life. You try your best to hold it together for the ones around you and then the phone rings. One phone call that really stands out is from my old friend Eric. If you kept up with my video post he is the one I called out when playing piano on chemo round 1.

That morning I had been working late and Eric had been drinking late. It must have been around 2am when the phone rang. Eric was in tears trying to find a way to trade places with me. I have a feeling it was a Facebook post of my little Sophie that put Eric into motion.

Brazos Bend State Park – November 2014

He was not the first person who looked for some way to trade bodies. Sorry man, God didn’t make life that easy. Eric’s compassion for my situation was deep. The line I kept hearing was, “Not you Dee, you have little Sophie to raise.”
Well my friend I have a little growing up left to do and I’m working hard to make sure I’m here for my little children. I really appreciate the love and the late night check ins. You rock sir.

So keep on keeping in touch and go work on that song!

Perrin Cacncer 11.03.2014 Brazos Bend SP

Posted by Perrin Derrick On F j, Y

I’m up here at M.D. Anderson for my last day of chemotherapy. Tonight concludes round 3 of 6. He have been lucky to have our family take care of the children for rounds 1 & 2. This time we have them in Houston with us. Things are different, but I think its better to have them here.

Today we spent time hiking Brazos Bend State Park.

We met a retired school teacher at the visitor center and we all got to pet a baby alligator. She was so sweet and asked if I could be added to her prayer list. You bet you lady. She was also nice enough to snap a family photo next to the oldest tree in the park. Prayers back to you sweet lady with the snakes and baby alligators.

We hiked for about 4+ miles and saw one alligator out in the wild. I love it that Kendra loves nature so much and wants to be in it as often as she can. Tomorrow we look to hike in the Big Thicket north of Houston. Wednesday I’m back at MD Anderson for a nulesta shot and then off to Corpus Christi.

Each brake is a bit worse than the previous. Keep in mind I’m accumulating chemotherapy each round. As my doctor put it I will be hit down to 90% the first time and then 90% of 90% the next. So each time my bounce back takes longer. This will be compounded by the upping of dose for round 4. Lets just say I’m probably not going to be taking long walks on the beach or hiking in the woods come round 6. We will see how far my will can go. Somewhere down the road I’m told I will need blood transfusions and other blood products. Yea, blood products… sounds fun right?

Well my battery is about to run out before my Cyclophosphamide does. The nurse acted like I get a bigger dose than the average Joe. Oh well, have a great night!

Derrick Perrin

Cancer, Its a beautiful thing!

Posted by Perrin Derrick On F j, Y

I sat outside the doctor’s office where I had my MRI done. I opened up the paperwork preparing to see the length of my Hip labral tear and I did get that and so much more. In that same report I got the news that I had cancer. In that same second I got a new perspective on life. 15 minutes after reading the results and letting it sink in I had to pull the car over and reread the report and make sure Derrick Perrin was the name attached to the report.

Yep, it was me on the top of the medical report, and unless the scan of my most inner bits was 100% wrong I have some form of cancer. After the tears stopped I immediately had a new focus. I don’t know how others handle the information but my first question is how long do I have to live. I bypassed the “How bad is it” because I knew it had been hurting me for quite a while wasn’t getting any better.

As I sit today I know its a stage 4 diffused large b cell lymphoma.

When someone has a car wreck or a heart attack and dies they leave us abruptly. They are gone it a flash without a chance of saying thank you or goodby. I’m lucky and see the world through my cancer glasses. The world is so beautiful this way. I’m not sure if other folks can truly understand. Before I was diagnosed I knew a few folks who had cancer and had a perspective that only comes with cancer. I just couldn’t figure it out till I was diagnosed. Its like a switch went off, or on depending on how you look at it.

I now sit in M.D. Anderson. I’m on day 2 of 5 of chemotherapy. These last 3 weeks have been hard as shit. Be here, be there, come quick, wait long & come back soon. If taking care of cancer was just taking the right medicines I think there would be a higher survival rate. But having a new look on life helps get past the crap easier.

And back to how cancer is a beautiful!

New Living Translation – Psalm 139:16
You saw me before I was born. Every day of my life was recorded in your book. Every moment was laid out before a single day had passed.

So knowing I don’t really have control helps and brings be comfort. We all know we are going to die sometime. We don’t know if it will be why we sleep or in a car accident or any other way he has chosen. We just know there is no fountain of youth and a day has already been chosen to meet our maker. In my new vision on life I can properly tell folks thank you and what they mean to me in my life. It gives me a chance to say goodby. We don’t know if that goodby is 3 weeks, 3 years, 30 years or longer. I get to share love with everyone who has shared their love with me. Each passing day I find there are more and more of you out there. If you have reached out I thank you so much and if I don’t get to personally chat with you please know I cherish each and every letter, card, comment, prayer, like, & share. You guys make this fight a lot easier to face. I’m trying to write more often and will be expressing things here. I’m finding a way to fold up the macho man appearance and share whats going on inside.

Derrick Perrin at the observation deck at M.D. Anderson – Houston, Texas

Thank you for the love and prayers. I appreciate all of you and am thankful I have what I have because I have been shown a greater love than I ever knew was possible. I’m trying to share that love back. I’m not wishing everyone could get cancer, I just wish everyone could see the world the way I do now.

Back to the fight. I love you all.

Derrick

I Have

Posted by Perrin Derrick On F j, Y

Well folks I just wanted to let you know what I have.

Perrin Family at Sophie’s Birth

I have an amazing family

I have friends that just wont stop (even if you want them)

I have people praying for me that I have never met

I have doctors scheduling and waiting for my arrival at M.D. Anderson (sometime in the next few days)

And I have a God who created me and knows the what, where, and how of everything around me.

I also have a tumor in my right hip/pelvis area that showed up on my MRI last week. So if I have ever been a pain in your ass the favor has been returned and I now have a pain in my ass. On great days I walk with a limp. The MRI/CT Scan report came back saying,

“Given the patient’s age and appearance, differential considerations would be led with multiple myeloma/plasmacytoma, lymphoma or sarcoma.”

So yea if none of those sound fun it is because they are not. After speaking with Gloria Ragan she said the blood work is steering away from sarcoma. She lost her son to Osteosarcoma this past year and has been an amazing resource. Her son James was simply amazing and although I only knew him for 2 years and being 16 year younger he had an amazing perspective on life and is a role model on how to treat others. Jams, thank your for sharing a part of your live with me.

Today if you ask me how I’m doing you can expect me to start crying. I don’t think its because I’m stopping to think about what we are facing, but the fact everyone is showing me so much love and compassion. I would have never expected it in a million years.

I feel like I don’t deserve it, but I thank you so much for all the love in support. As I’m writing this now I have to stop, wipe tears, and blow the nose.

I’m ready to start this fight and I know I have one hell of a team around me. I will try to keep you posted with the progress and how things are going.

Thanks for the prayers

-Derrick

DerrickPerrin.com