Coming in at a whopping 3 times the normal limit, my white blood cells are at 30.5. This is down from 70 plus on Wednesday. As my W.B.C. count drops I feel better and better. That might also coincide with getting a few days away from chemotherapy.
So labs are going good. My hip has a little pan but I think it’s muscle sourness.
Headded into the weekend with a lot of family Christmas activities on our plate plus a wedding shoot on Saturday afternoon.
Kendra and I just made it in from round 5 of chemotherapy. We had a good time in Houston considering the cancer and chemotherapy gig. In this video I outline some of the things going on between round 4 and round 5.
On the way to pickup the family I stopped in for a naughty snack at Chick-fil-A. The sweet lady who handed me my order asked how I was doing at the hospital. I quickly noticed I was still sporting my plastic arm band. I’m guessing the chrome dome was another dead giveaway.
She wanted to know what I have and let me know her 10 year old son also has cancer. Not 10 minutes drive down the road this lady’s son was sitting in Texas Children’s Hospital fighting off leukemia. He has has it for 3 years. I didn’t know what to say. I have been fighting for 3 months and unless something strange pops up it looks like I’m in the clear for a while. I didn’t know if I should hug this stranger, cry, or run out the door. We traded names for prayer list and parted ways. For some reason the day I complete a chemotherapy round is always an emotional one. Patrick’s story got to me today.
So today I add 10 year old Patrick to the prayer list. He is up there with old buddy Andy Peal who is getting setup for head surgery in January.
Quick answer – I will be back to complete my last 2 rounds of chemotherapy starting next week
This week Kendra and I have been on a fact finding mission. We are trying to find out what is best for our family. I tracked down some of the best natural / holistic / unorthodox cancer fighting docs I had access to. These are amazingly bright and gifted doctors. I was surprised at what they had to say.
When I was first diagnosed and fast tracked through the back halls of MD Anderson I felt rushed and pushed and at times like I was being kicked into something I didn’t have time to think about. I know the big pharmaceutical business plan and it was hard to not see it around ever corner. When insurance has a hick-up and you find yourself faced with over rides, extensions, and swiping cards to pay out of pocket expenses the Big Pharma machine looks evil. At that time a lot of folks were praying for healing and I also reached out for prayers that my medical team would have the knowledge and the care to direct me properly. There have been some hurdles along the way. Twice the hospital missed giving me the right medication at the right time. There was also the morning I woke up laying in chemotherapy. That was not a cool morning, trust me you want the chemo in you and not on you.
So there I sat jumping into chemotherapy when everything I was reading told me to stay the hell away from the drug. Things changed a bit when the clinic PA walked in and explained Lymphoma to us. She saw there is some cancer in my family tree and informed us this cancer is not like any of those. She said the tumor is not like a regular cancer tumor. We went over all the nasty side effects and started running the EPOCH-R chemotherapy protocol.
After 3 runs of chemo I had a PET scan come back clean. Great, right? Not really. The doctor came back with upping my dose and wanting to hurt me even more. I was not a happy camper and had to question what he was doing. Dr’s don’t typically like that. We ran round 4 and came up with a plan to visit other doctors for 2nd opinions. Wednesday we were in Austin and Thursday Houston. Both alternative approach doctors sat down and explained things better than my MDA doctor had done.
The information given to me was not the information I wanted to hear. I wanted a maverick to set up and say “I have seen this before. Your chemotherapy is killing you. Please stop it now. Here is plan ‘B’ and plan ‘B’ is very successful”
Not even the doctor who was put on trial by the FDA want me to vary from my chemotherapy regiment. His oncologist was surprised at the cocktail. He was also happy with the results. It seems like the prayers for guidance have been working.
I’m where I need to be and will be continuing on with upping my chemotherapy starting next Thursday. I’m not happy about it and someone might have to handcuff and drag me into MD Anderson next week, but I now know that is where I need to be.
This concludes my loose ramble about this weeks road trip. Later I will break down each doctors visit and the information I was able to gain. My Austin doctor has some very positive diet and supplement directives that will help this next round of chemotherapy. I will post on that soon.
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.
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 email@example.com. I have 15 days to make a decision on what to do about chemotherapy.
“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.
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.
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.