Tag: chemotherapy

Ringing out my last chemotherapy round

I completed my 6th, and last, round of chemotherapy on January 10, 2015

As much as I hated starting chemo, it was almost just as bad stopping the process. Sure, I was happy to have my permanent I.V. removed. With the picc line out I would be able to shower without wrapping part of my body in saran wrap. Without a picc line and without chemotherapy scheduled my body is on its own. By my mid chemo scan we could tell the drugs were working… “What happens when the drugs are stopped?” is a question often floating around in my brain.

We just wait and scan, and after waiting some more we will scan again

I have a pet scan scheduled on February 17th. We will be running the scan and having a doctors visit the same day at MD Anderson in Houston. I have a full plate of editing work between now and then so I don’t have to think about the scan all that much. If I have much time to do so it starts to scare the crap out of me. Yea, go a head and send me a note or a message to “not worry about it” or “wait till you get the results to think what the next steps might be” but that is easy to say. Yea, I’m staying positive and praying every day. I realize in the last 12 months I have had a cancer tumor and it has gone away. I pray that all tumors will forever stay away. I have a lot to do in life and to be honest I really don’t feel like dying anytime soon.

I didn’t have a video post since my last trip for round 6 so I’m posting it here.

I rang the bell

When I started my rounds of chemo I was unaware of the bell. Here is a photo of the bell that hangs in the Ambulatory Treatment Center.

When you complete your chemotherapy they let you ring the bell. They have the same setup for those who take radiation. I had mixed feelings about ringing the bell. It is there to celebrate an end, but for me it was a beginning. It is a start of no drugs and letting my body take care of itself.
It worked out like this. I completed my chemo and handed in my bag. I received my white blood booster and then was shipped up to the 8th floor to have my picc IV line removed. The process was fast and we were sent on our way. I was never asked if I wanted to ring the bell, but Kendra thought I should. In the end I’m glad she had me ask If I could. Standing there I knew I could not look at her or I would start to cry. It was one of those moments you know going in it will be emotional, and it was. I tried to get in and out, ring a ding and move on. The nurse who helped us celebrate was not satisfied with my ringing so she helped me out. She went on to let us know she has 5 family members fighting cancer.

I run into folks like this nurse all the time. It might be that I’m just in-tune when someone reaches out with cancer care or the fact God is salt and peppering these wonderful folks in my path. Either way I enjoy the love and affection found in the stories that are shared with me.

This road is hard

I try and try like hell to eat right and make the right decisions day in, day out. This is hard, really tough. One can only have so many green smoothies while trying to gain weight. I’m sitting around 195 pounds and that’s good for me. I’m just trying to make all the right decisions and not think to much about it. Wish me luck with that.

On a positive note we have been blessed with plenty of work lately. I have been spending a few hours a day at Keiwit Offshore in Ingleside Texas.

We crossed paths with the Browns last week at Coffee Waves. They play music and I had the opportunity to record their studio album in 2000. Here is a short clip of last week’s show.

Browns – Live Folk Music at Coffe Waves | Port Aransas from Big Box Pro Wedding Video on Vimeo.

This week I’m shooting their 2 hour performance. I always have a great time when I get to mix video and music in one production. Well off to bed for now. I’m tired of rambling on and will try to get another post out soon. Thanks for being a part of all this.

-Derrick

Watch “Chemotherapy round 6” on YouTube

Posted by Perrin Derrick On F j, Y

Chemotherapy round 6: http://youtu.be/eL1nE3b2kRw

This video is an update by Derrick Perrin on Derrick Perrin’s 6th and final round of Chemotherapy at MD Anderson.

Chemo Souvenirs

Posted by Perrin Derrick On F j, Y

On this chemotherapy journey I have picked up some souvenirs along the way. My first came on round one. I was staying inpatient at MD Anderson and they had a reward program for folks who walked. Kendra and I walked a lot so I got lots of colorful dots on my door. At the end I traded in dots for bandanas. Today in my home office I have a red and green bandana hanging from the wall. I’m guessing you could use these to cover your hairless head. Mine were autographed by my amazing nursing staff so they hang on the wall for now.

The next souvenir that has been accumulating in safety pins. I know, not as exciting as nurse autographed red and green bandanas, but trophies none the less. The process of wearing a backpack full of chemotherapy is unique. You have a backpack with IV bags inside and two bungee type umbilical cords that stretch out to my pic line.Without tethering the bungee to your clothing you setup a tug-a-thon with your chemo bag and your skin that the pic line is sutured to. So we introduce the safety pin. It attaches to your shirt and prevents arm failure.

The safety pins get collected and we start up the next round with a new pin. I believe two pins have done double duty since we only have 3 right now.

My collection of chemo safety pins

Should I keep them or try out what Kyle did? Check out what one man can do with a red paper clip:

http://oneredpaperclip.blogspot.com/

There is always the option to eBay them. I’m just happy to have received my last chemo safety pin and be looking at the end of my treatments. If you have ideas on what can be done with used safety pins please comment below. I’m up for suggestions.
Thanks for the love along the way,
Derrick

Research in numbers – Lymphoma

Posted by Perrin Derrick On F j, Y

Tuesday November 25th, 2014. This starts the 6th day of my 5 day Chemotherapy run. Read more on the delay of game in yesterdays fun filled post “The Big Spill”
It is cold this morning and I’m finding it very easy to find negativity in this huge revolving cancer door. Each time I hear a cough or see someone wipe their nose I cringe on the inside. I try to pour myself a fresh cup of water and I get this:
After staring at my Styrofoam cup of mineral water I was jolted into happiness by the bald lady wishing everyone a good-morning and calling everyone beautiful. I’m not sure if they hand out camper of the day here at MD Anderson, but if they do this lady has it in the bad and its not even 8a.m. So shifting gears and trying to be positive I pour out the mineral water and continue my quest for numbers when it comes to the drugs I’m taking. I have completed all but my last drug for this weeks run of chemotherapy. Today all I get is Cyclophosphamide. One hour of Cyclophosphamide is what is between me and being done with round 4 of chemotherapy. The quest for numbers is what determines if I’m back for rounds 5 and 6.

So here are some of the things I’m collecting. No pen and paper today so the rest of this blog post will be my note pad:
Chemotherapy is not just a single drug. For most cancer treatments there is only one type of chemotherapy given. My doctor chose a chemotherapy cocktail to given to a small population of cancer people.

This year I’m one in 70,800 people diagnosed with Non-Hodgkin Lymphoma.

We take this and then knock it down to 1 out of every 3 have Diffuse Large B Cell Lymphoma. That puts me into one out of 23,600 this year.
Depending on how test results come back doctors prescribe 3 main protocols:
CHOP
R-CHOP
EPOCH+R

CHOP is the old school protocol. R-Chop has been used for 20 years. EPOCH+R is the new kid on the block. The EPOCH+R is an aggressive protocol that I had to test into. My age, heath status, & electrocardiogram were all factors on what cocktail was hoked up to my IV. So I’m looking and looking for numbers of patients who fit my demographic and my drug class. I really don’t know how many of the 23,600 folks are fit enough to take the high dose super regiment of chemotherapy. I found out my dosage is 2x the normal dosing from what they ran in drug trials. This makes it hard to make a judgement on long term side effects. There are not enough years and enough data at my toxic concentrations to make a great decision now.

I challenge anyone reading this to help in finding any information in the positive or negative on long term effects of EPOCH+R.

Comment below or send email directly to derrick@bigboxpro.com. I have 15 days to make a decision on what to do about chemotherapy.

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

Hair today, gone tomorrow

Posted by Perrin Derrick On F j, Y

So this passed week the hair on the top of my head started to fall out. You might have seen the post and the video where I shaved it off before it fell out in patches. This week will be when I go from some hair to no hair. My eyebrows are now starting to fall like the autumn leaves.

Derrick Perrin with open eyes

My hair loss was really strange. I knew from the time I talked with my oncologist that I would be hit with some really strong chemotherapy. Due to my age they put me on high octane chemo. EPOCH+R or R-EPOCH is my chemotherapy of choice. Last week I felt some tingling associated with my hair follicles. Three days after the tingle I was out in my garage shaving them off. Three days ago I felt the same thing with my eyebrows and today with a mild pull and no pain I can get the hair to come right out.
MD Anderson has classes on how to paint on eyebrows and choosing the right wig. I think I might go to the “Groucho Marx” school of makeup.

I’m guessing spreading some super glue to my last few hairs wont make them say and look good? I really feel for the women I see around who are bald. They work so hard a beauty and advertising would make you think flowing hair is your key to Saint Peter’s gates, but its not. It is temporary and if this shit doesn’t kill you it will make you stronger.

I can’t wait till all my other hair falls out and I will go to Halloween as an Olympic swimmer.

Well that is it for now. If you want to find me just follow the track of hairs left behind.

-Derrick

My Chemo

Posted by Perrin Derrick On F j, Y

Today is my month anniversary of finding out I had some sort of cancer. Things are a bit slower now that we have been poked prodded and tested. My knowledge about cancer has grown larger than I could have ever imagined. Before I started my research I thought there was one type of chemotherapy. I quickly found out that is like saying there is one type of soda drink or on type of car. I also found out that if you mix them you can get a better result. My doctors have chosen a protocol or cocktail called R-EPOCH.

R-EPOCH:

Rituximab 375 mg/m2 IV on day 1 plus

Doxorubicin 15 mg/m2plus Etoposide 65 mg/m2plus Vincristine 0.5 mg/day by continuous IV infusion on days 2-4

Cyclophosphamide 750 mg/m2 on day 5

Prednisone 60 mg/m2 on days 1-14; every 21d[29]

So within the protocol there are a few drugs that have a spot in the sequence and a duration before the next one runs. While at the hospital you are connected for 5 days and your nurses are changing bags to keep it running non stop for 5 day. They hang a new bag and switch over right as soon as the old back completes.

So it all feeds into your PIC line shown here. I tried to get another color but purple is all they had. If I trace the line in my body up to my armpit I can roll it and make the tail outside of my skin move. I know sort of gross, but I had to share.
This line will be with me until the end of my chemotherapy run in January. On my days off from MD Anderson we have to flush the line and keep the insertion point clean. Kendra is doing a great job taking care of me and flushing me each night. I’m still getting use to sleeping with a tube coming out of my arm. It also have to wrap it up while strumming the guitar. If I don’t restrain it it thumps the guitar and I have an accompanist drummer.

There are a few other meds that I take to help with the chemotherapy. One shot to help with white blood cell count, another pill to help with nausea created by the chemo and there is a antibiotic to help with staying infection free.

Well thanks for reading and staying positive. I’m off to find a place that can do my blood-work locally. Fun times in Perrin Land.

-Derrick

DerrickPerrin.com