Posted by Perrin Derrick On December 4, 2014
Today was great. I will elaborate more later but just wanted to let everyone know we are talking with doctors this week and coming up with cancer action plans.
I didn’t hear what I wanted to hear today, but I did hear what I needed to hear today.
I’m going to get some real world work done and should have a video for you on Thursday.
Take care now
Posted by Perrin Derrick On December 2, 2014
So sweets are a problem…. a seriously huge problem. Plain sugar, sugar substitutes or anything that has a huge glycemic index will cause you problems. So choose your poision in the form of sugar or sugar substitute, they will kill you.
There off my soap box now.
This week’s forecast is set for travel with a chance for answers:
Tuesday – We drop off our little crew with family in Port Lavaca. They are amazing and the kiddos love it there. So thankful we have them in our life and our kids are so loved by so many.
Wednesday – Austin, Texas is the home of N4H Research. Glen R. Luepnitz, Ph.D. is the man with the plan. He holds a doctorate in Nutritional Counseling and that is really cool. I’m going in to pick his brain on nutritional oncology. That would be the type of oncology that does not involve chemotherapy.
Thursday – The Burzynski Clinic in Houston, Texas will be our destination. Stanislaw R. Burzynski, M.D., Ph.D. is a cancer mad man. This is a good thing. 10 years before I was born he identified naturally occurring peptides in the human body which he concluded control cancer growth. He found that there is a marked deficiency of these peptides in cancer patients. My M.D. Anderson oncologist doesn’t care what causes cancer and only has one way to fix it…. Chemotherapy.
Friday – Well that is up in the air. We are hoping to get into Dr Hammond’s office in Dallas. He reads the RGCC Blood test and dissects what works best in the body. I had blood sent to Greece in September and it was tested against a board of chemos and natural substances that kill the cancer in my body.
I’m really looking forward to getting into Hammond’s office. His office has real promise in my world.
We will keep you posted on what is going on this week and how the travels are going.
Posted by Perrin Derrick On November 25, 2014
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 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 firstname.lastname@example.org. I have 15 days to make a decision on what to do about chemotherapy.
Posted by Perrin Derrick On November 24, 2014
“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
Posted by Perrin Derrick On November 23, 2014
I’m sitting here getting a new bag and trying to figure out some research on my chemotherapy protocol.
It all seems to be uncharted territory. The protocol has only been used for 7 years so we don’t have a lot of information about long term issues that typically pop up with other chemotherapy drugs.
Posted by Perrin Derrick On November 18, 2014
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.
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!
Posted by Perrin Derrick On November 14, 2014
Overall a good week. New things are coming soon to the video production side of these post.
Have a good friday
Posted by Perrin Derrick On November 13, 2014
Trying to stay cool with chemo on my back
Each 21 days I start a new 5 day cycle. Each 5 days brings be a mix of chemotherapy that is trying to kill my cancer while coming close to killing me. It took me a long time to get okay with chemotherapy and allow it to run in my veins. The picc line I have runs into my arm and across into my heart. I had an extra x-ray to make sure it had reached my heart. So chemo start to the heart and then pumped to all the other organs for it to work.
There is the setup. 5 months of showers in plastic wrap.
Hats and chemo go hand in hand, well head in hat.
When the pump line fails in the night you wake up in a pool of chemotherapy. So you pack up all your goodies that were contaminated and take them to the hospital so they can burn it all. Not fun stuff.
Posted by Perrin Derrick On November 5, 2014
My first oncologist at MD Anderson was in the Orthopaedics department. Kendra looked at all the people there and then proclaimed,
“They all walk like you do”
Sure enough all the patients there had a limp just like I did. I could try like hell to not to limp and even on the days I thought I was walking good people would still ask me why I was limping. It seemed like there was no getting away from it. The original department put me on crutches and told me to stay off of it. Being that my first MRI, the one that caught the cancer, indicated I had a tear on my hip and a fracture of the bone I knew why I was walking funny. A few days of trekking around MD Anderson on my crutches helps lesson the inflammation in my hip. I also removed all refined food substances from my diet. That was the 1-2 punch to get me prepped and ready to pour chemotherapy on the fire.
After all the scans and test I was bounced from the Orthopaedics to the Lymphoma department. They we not so concerned about me being on crutches and so they went back to storage. Working out and pushing it was something okay-ed by my doctor here at MD Anderson. So I’m back on the bicycle and working out from time to time. On this break I will try harder to eat best and ride hard.
Posted by Perrin Derrick On November 4, 2014
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!