THIRDWAVEDAVE'S HEALTH UPDATE: THE PHONE CALL I WAS WAITING FOR

I belong to one of the most amazing email groups--CONRECO.  Some of the smartest, politically savvy individuals on the Internet. They're also some of the most generous, patriotic people you'd ever want to know.


Back on April 10, I put out a notice that I'd be making a slight change to my blog site: the inclusion of "gaming" and "my health" as topics of discussion.  Many know that I'm waiting for a bone marrow transplant for CML--a rare form of Leukemia--and the notice prompted many to wish me luck and to include me in their daily prayers.  Powerful support group, and most appreciated.


One of the members (won't mention a name since I don't have permission at this time) told me of someone who's a 10 year Leukemia survivor and wanted to know if I'd like to talk with her.  My answer was in the affirmative, of course. 


Well, this morning a call came in from one Rhonda Kokot.  She had AML, a very deadly version of what I have, CML.  10 years ago treatment options were few, and what drugs were available, according to Rhonda, were ineffective, so transplant was the course of action. Rhonda went thru chemo, radiation and the transplant with flying colors.  It wasn't easy, but she made it.


When she called this morning, she was on the road traveling to a race... a half-marathon race in which she's a participant!  God love her.  


During the call, Rhonda took me thru the bone marrow transplant process from beginning to end, answering any and all questions I had lurking in the recesses of my fertile imagination.  I know doctors prefer not to scare you, so they tend to "soften" the language when describing certain medical procedures, especially ones that could end in a 21 gun salute, followed by the folding of Old Glory and sounding of TAPS. 


A half-marathon!  You know that's 13 plus miles, right?  Bless her heart. 


Since I'll be in the hospital for a month, maybe longer, Rhonda took the time to advise me on how to make the stay more comfortable, more home-like. Some items never occurred to me, some did.  Long ago I learned to bring my own clothes.  The hospital gown is simply unacceptable, as anyone who's been in the hospital knows. People close to me know my feelings about the person who invented that wonderful garment.


Our conversation was most productive and cleared up several things I was nervous about.  However, I do realize each person reacts to these transplants in different ways--according to research studies, most are devoid of the horror stories you hear about.  There will be some bumps in the road, I know this, and they'll be dealt with as they arise.  Rhonda had a few nasty items hit her too, but nothing her medical team couldn't handle. And today, medical teams can handle a great deal of trouble.   


I can't thank Rhonda Kokot enough for taking time out of her day--her weekend--to talk me down off the ledge. And to the CONRECO member who set up this meeting.  Blessings to you as well.  


******


Now on to the phone call I've been waiting for. You're probably thinking I was waiting for Rhonda Kokot's call.  Well, it was one of the calls I was waiting on, but not "the" phone call.


Last Thursday, one of my medical team members phoned me.  Christine's message was straightforward: that my donor still had a few routine tests to go thru but at this time they were able to "green light" my transplant. I must say, those words brought back the feelings of anxiety that only a first static line jump can create in the pit of your stomach. Some of you will understand what I'm talking about.


So, my orders are as follows:  The University of California Cancer Center will be expecting me May 4th for admission.  Chemo will begin soon after one medical procedure is complete--the installation of a chest catheter, not sure of the technical name.


On May 10th, my donor's bone marrow will arrive at Sacramento International, then transported to the cancer center. Soon after arrival, the bone marrow will begin flowing into my veins.


As a reminder, I will have a laptop and video at my bedside so I can document this process the best I can.  On those days when I'm not feeling well enough, Andrea Shea King will transcribe by phone to my blog anything of note.


That's it for now.  Updates will follow in the days to come. Blessings to all of you who've prayed for me.  Don't stop now!  


***

Waiting on a Bone Marrow Transplant.

Dear Friends,

Many of you have been praying for Dave's recovery, and for that he is appreciative.

He's asked me to update you on his condition. As you know if you've read the previous posts linked below, Dave's been fighting what's known as Chronic Myelogenous Leukemia for several years. Last year he began a clinical trial with drug maker Novartis, using Tasigna, a relatively new drug with promising results. Without getting too technical, this drug prevents the bone marrow from overproducing the white blood cells that literally crowd out the red blood cells we all need to live.

For reasons yet unknown, Dave's disease became quite aggressive in the past several weeks, causing him a great deal of fatigue and discomfort as the CML shifted from "chronic" to "acute".

Since he was admitted into UC Davis Medical Center in Sacramento three weeks ago, Dave has been undergoing extensive tests for a bone marrow transplant. His oncologists are searching for an appropriate match in the bone marrow donor database and as soon as one is found, the transplant will take place.

Meanwhile, his immune system is virtually non-existent and he's being kept in an isolation unit. Visitors must gown up as thoroughly as an OR surgeon to ensure Dave is not exposed to any bacteria, virus, or germ that could complicate his condition.

Dave doesn't yet have his personal computer with him, but we're hoping that will change very soon. He's looking forward to getting back online and emailing with you!

We will keep you posted as soon as there's something new to report. Thank you for your emails (send to him in care of me at: Radiopatriot@gmail.com), phone calls and prayers. You have no idea how much they cheer him.

Here are the previous posts by Dave about CML

TWD Update: UC Davis Cancer Center, Tasigna and CML - July 29, 2010

TWD UPDATE PT. 2: TASIGNA + 30 DAYS - Sept. 8, 2010

TWD UPDATE PT 3: CML, TASIGNA + 60 DAYS - Nov. 7, 2010

Scroll down to read my last two reports.

TWD UPDATE PT. 2: TASIGNA + 30 DAYS

*The first TWD Update is here.

Since the first update a lot has happened. A month ago I began taking a new generation cancer drug--TASIGNA. The drug was just approved by the FDA in June and I'm part of the ongoing clinical trial. If Tasigna continues its success rate, it will replace Gleevec as the first-line defense against Chronic Myeloid Leukemia.

In the short span of a month, this is where I'm at:

White blood cell counts are the most important item tracked on the blood test. In June my WBC was 32,000 (normal is 5-10k.) We expected it to rise prior to medication to about 40,000. We were wrong. It skyrocketed to 105,000--30 days ago. This is a place you really don't want to be.

I began with 300mgs of Tasigna, and within the first few days I had every side-effect in the book. It's a thick book. My doctor brought me back in a few days later to see how I was tolerating the meds. I survived all side-effects, even the big one: Sudden Cardiac Death. This is always a good sign, or so I'm told. After seeing the results, the doctor then doubled the dosage to 600mg. I thought since 300mgs was so much fun, 600 should be a blast! Actually, it wasn't that bad.

As the days went by, my body began fighting off the side-effects, but a couple remain with me. This is normal and I can live with it.

I'm supposed to weigh 185 lbs. At one time I dipped into the high 140s. I began treatment at 154 lbs, and today I weighed in at 160.5 lbs--when you lose that much weight, you begin counting those half pounds. Gaining weight is very good sign.

Today my WBC registered 3,500 (normal is 5-10k.) My doctor said it's off-the-charts good news. However, he said the drug was working too well and we'd have to reduce the daily dosage to 450mgs. The idea here is to raise my WBC to within the normal range of 5-10k. This should be no problem.

Because of today's outstanding test results, my doctor has already ordered additional and advanced blood tests that will examine down to the cellular level to see if the Philadelphia Chromosome is packing its bags and leaving town. The goal of this drug is to add yrs to one's survival or rid the body of the PC. If you can rid your system of the PC, you're essentially cured. And there are many cases of this on record. I plan to be added to that list.

Many wonderful people have included me in their daily prayers. Words escape me--Thank You wouldn't be enough. But please keep me in your prayers because they're the best damn health coverage I could ever hope to have.

Blessings from me to you.

UC Davis Medical Center--Sacramento