Hangin' With The Saint

Entered St. Francis hospital on Friday September 29th.
Underwent 4 days of intense chemotherapy treatment which was at a dosage of 10X what I've received before. Next three days were used for total body radiation therapy which I had never done before. Two 30 minute treatments per day. Just laying there on your side with a nice warm blanket covering you up with easy listening music in the background. Went off without a hitch.

The afternoon of September 4th was a party... 
My stem cell replacement party began with music from Seeds, and Glen Kaiser and friends setting the mood. With an army of nurses, technicians, med students, and of course Anna by my side, they pushed my stem cells harvested in July back into my body. WOW! It was a bit surreal. 

They had told me the preservatives used in keeping my stem cells would taste like and give off the aroma of creamed corn. Sure enough... they were right. A couple of nurses took turns pushing the stem cells back in to my bloodstream through a huge 60 ml syringe. It was an adrenaline rush to watch them reenter my body!  Afterward all the nurses congratulated me with high fives and "happy birthdays".  They say it is basically a new birth for your system.

SYSTEM REBOOT.................. MORE LATER..............:-)

All Systems Go...

My last chemo treatment was in the first weeks of June.  A few weeks later I was back at St. Francis for an outpatient procedure to place an Apheresis Catheter in the jugular vein on the right side of my neck.  For the next few days they harvested the stem cells from my blood with this really cool machine that looked like something out of Back To The Future.

Amanda, my stem cell harvesting nurse, was wonderful.  Thank you Lord for great nurses!  My stem cells are now frozen in liquid nitrogen under lock and key at St. Francis awaiting my arrival for my Stem Cell Replacement Therapy.  

On August 29th I will begin this final phase of the treatment which will finish killing off any remaining cancer cells in my body. It gives me the best chance for a long remission of the cancer. I would be fine if it never came back but... it's a lymphoma that cannot be cured... just managed.  

I will be getting 4 days of chemotherapy at a dosage of about 10 times the amount I had been getting previous.  YIKES!  Then over the next 2 and a half days I will receive 5 total body radiation treatments.  The doc said they were low dose but I think I will put some un-popped popcorn in my pockets just to see what will happen.  After the 5th radiation treatment they will have hopefully killed all the remaining cancer causing cells in my body tissues, my blood, and my bone marrow.  Then on the afternoon of the 8th day in the hospital I get my harvested stem cells back in my blood.  

This is where the "coolness" happens!  My stem cells know they are back in MY body and begin to realize that I need some bone marrow to produce white blood cells since those doctors have killed them all.  So my stem cells head for the bones and dive in and begin manufacturing the blood cells I need. PRETTY COOL!  Over the course of the next few weeks my body will begin to repair and replace all the things lacking for my immune system to begin to be able to fight off infections again. Once my white blood count reaches a certain point they will tell me to "hit the road" and after 3 to 4 weeks in that hospital room and bed I am sure I won't be able to get out of there quick enough.  

Please pray that the therapy will accomplish its' purpose and that I will remain healthy during the treatment.  Also pray for Anna as she gets to sit by my side and watch all this happen to her husband... it ain't easy.

I thank God for your prayers.

THINGS I'VE LEARNED....

... God provides for and protects my family.  --  When I first was diagnosed with Lymphoma all I could think about was that God could not allow me to die because my wife and children needed me. I was the provider... I was the protector.  It took me a few days for the Lord to impress upon me that... He is the provider... He is the protector... of me and my family. He uses me in that way, but they would be provided for even if I weren't around. But... I would like to stay around.

... Going from 330 lbs down to 250 lbs is a good thing, not a bad thing.  --   I just wouldn't recommend cancer as a weight loss program.

... Thin folks have a whole different set of problems,  including trying to cross your legs without any "padding" over your bones.  --  Still not sure how is to be done without hurting.

... Never take your wife for granted.  --  Realize she is a gift from God and your helpmate in this world and you would be lost without her.

... Tell your family that you love them every time you can.

... NEVER, EVER, pass up an opportunity to have a cone of vanilla soft serve ice cream.  --  NOT ice milk or some low fat impostor version

... WhataBurger Fried Lemon pies make a trip to Tulsa worth it.

... Great Doctors are extremely important, and great nurses make your life easier.

... Compression hose and grippy socks make a fashion statement.  --  Just not sure what that statement is.

... Never trust a hospital menu that says it is a five star dining experience.

... Random acts of kindness just seem more special when you can't do things for yourself.

... more later...

Final 3 days of fun

On the drive to my final 3 day chemo Tulsa radio said "Avoid 61st and Yale, there is , a police standoff at St. Francis hospital."  Made parking a little tricky and had to walk through a SWAT team at the South entrance, but now I'm sitting on my bed, port accessed, blood drawn, ready for chemo treatment. So ready for this stuff to be done.

Last PET scan show that the tumor in my abdomen was minuscule!  Hooray!  Chemo this weekend, stem cell harvesting in a few weeks and then a countdown to the final month long treatment.

Three Day Chemo treatments Begin!

I started an update about three weeks ago but had trouble posting it, so thought I would give it another try...

(from three weeks ago)...  This is day two of my first three day chemo treatments to finish off the last 20%of this crazy tumor on my abdomen.  This is the "ICE, ICE, BABY" treatment regimens. Seems to be going greet. One of the first new drugs,  "I" , had a possible side effect of hallucinations...but none appeared.  (glad of that). Today I get "C".   It all seems to be going well. I also get "E" and another 24hour infusion of "I".  The hospital staff is great and they treat me as though I'm the only one in the treatment center...oh...I am the only one here thie weekend. Doc. Lynch has been by a few times and says things are proceeding very well. Hoping my body responds as well to the ICE as it did to R-CHOP.

(fast forward to May 16th...today)... Well I am back at St. Francis for the second of three rounds of the three day chemo treatments.  Great nurses taking care of me, a friendly Doctor that enjoys answering my questions, and my wife with me through it all... I am truly blessed. Hopefully two and a half weeks from now the PET scan will show no more signs of the tumor and I can begin prepping for the Stem Cell Replacement Therapy to come. Soooooooo ready to be through the treatments.

I feel very good and I really think my body has responded well to being "infused" with so much poison chemicals over these last 6 months. Just seem to get tired easily but otherwise not many negative side effects. I give praise to the Lord for keeping me safe and healthy through it all.

Wow! I need to catch up.

Just looked and saw my last blog entry was the end of January as I was going into chemo number 5.  For a guy who has nothing much scheduled to do with his days they sure seem to fill up quickly.

Well I am now one full month out of my last chemo treatment (number 6) that was on February18th. I got a cool certificate and Anna posted it on the fridge; just like the accomplishments I had as a kiddo.

Time sure flies by.  The six treatments went by so quickly.  Made lots of new friends in the infusion center and will actually kind of miss sitting in the recliner with my wife by my side while Cyndy and Jack kept the bags of chemo drugs dripping into my system for 5 or 6 hours. Surprisingly good coffee for a clinic, lots of Little Debbie snack cakes to munch on, and interesting conversations around the room with others battling this crazy disease.

I am sure everyone has unique responses to dealing with chemotherapy infusion but as for me I found it exhilarating.  Perhaps it was from the "good" drugs they gave me to combat the feeling of the "bad" drugs, or maybe just the adrenaline rush of knowing that the chemo they were pushing through my port into my heart was heading on it's way to kill those cancer cells. Either way, I looked forward to chemo days and shooting another bullet against this cancer.

I don't want to give the impression that fighting cancer is fun or without it taking it's toll on me. Fatigue, pain, nausea, and just knowing that nothing is right about what you are going through makes for some long days and some sleepless nights. But praise God that this first stint of the journey is over.

A few weeks after my last chemo I had another PET scan. This time in the Tulsa office of Oklahoma Oncology and a few days later received the results while visiting with Dr.Lynch.  All my lymph nodes responded wonderfully to the 6 rounds of R-CHOP and most of all the tumor in my abdomen, which started out about the size of a football (regulation NFL size, not those wimpy NERF ones), has reduced in size by 80 percent.  While that is great news, we were hoping it was reduced down to nearly nothing so we could proceed with the Autologous Stem Cell Therapy (big words I know) but it wasn't.  Sooo.... I get to have a few more chemo treatments to finish off shrinking away the rest of the tumor.  No more R-CHOP for me... I am moving on to a new therapy called ICE.

NO.... I won't be doing any white guy rap, just a different form of chemo. It will be a little more intensive as the chemo is delivered over three days in St. Francis Hospital in Tulsa instead of the 5 hour infusion in Tahlequah.  Logistically will be a little tougher, but after two rounds they hope the tumor will be gone and we can move toward that final phase of the Autologous Stem Cell Therapy.  Even though the time frame is a bit longer, it will give me the best chance of being cancer free at the end.

Dr. Lynch offered some more encouraging news that if the cancer recurs years from now there is a new treatment that has just been approved by the FDA and it is in the form of a pill.  A pill that kills lymphoma... wow!  Now that is truly a miracle.  And who knows what new treatments may even come after that. 

We will trust God and see what He has in store for me. Again I thank all of you that are praying for Anna and me (and my family).  We have been truly blessed by it.

My friend Josh Maxwell and many others would want me to make sure that I inform you about the Benefit for Brownie they are putting together to help with these medical costs.  I am very thankful I have medical insurance and I appreciate what they are doing to help me deal with the sometimes overwhelming reality of what all this treatment is costing.  

Brownie

Five and Counting

Chemo number five is underway today. Interestingly, there is a nationwide shortage of saline, probably due to the number of flu cases.  Won't affect my treatment. Well, it actually might actually speed it up a bit. After today I have just one more scheduled chemo near the middle of February then sit tight for a month and have another PET scan. Hopefully all of the tumors will have been completely melted away by the chemicals and I can proceed with the final leg of this portion of the journey...the stem cell replacement. Not sure what to expect from this other than the fact that it will keep me in a hospital for a full month. WOW!

My infusion today is being done over in the Tahlequah Oncology clinic, next door to TCH.  They have officially moved out of the hospital. The new room is six or seven times as large as the hospital, which is great because Anna will be able to be next to me for the entire treatment (crocheting dish cloths for some of the staff).

I have been surprised of late at the number of people I come in contact with that do not recognize me. I guess being 90 pounds lighter than I was in July, having a short buzz cut, and no big bushy beard makes me look like a different person. I noticed it a few weeks ago when I ran into one of my former students, Will Grayson, at Walmart. As I approached him with a big smile on my face, he noticed me out of the corner of his eye and quickly looked back down then glanced again at me as I approached him and looked away again, probably hoping I wasn't heading staight for him, but I was. Then when I spoke to him he immediately recognized me. It was kinda funny and surprising to me, but it has happened many times since then and I am getting use to it.  So... If you see a thin guy with a beanie cap on approaching you like he knows you, it just might be me.

Thanks to everyone who is continually lifting  me up in their prayers...it is working.