Handcuffed To The Ocean

I apologize for having been MIA for the last few weeks. I signed contracts with Putnam/Penguin to produce a new 3rd edition to The Complete Idiot’s Guide to Private Investigating. I wrote most of that  while I was in the hospital. I’m now working on the edits that the various editors have made. So I have sort of neglected the blog. I do have another blog on Haleigh coming up. It is old material but it contains material that will be all new to you folks.

While I was in Gainesville as an out-patient (for a 100 days after the transplant) some friends from my church drove over from Ponte Vedra, FL. They brought their two kids, their teenage son, Conner, and their daughter, Lexi, who was on her way to BYU to college. Lexi plays the harp. They brought it  in from their car and she played a couple of songs for me. I’ve posted them to Youtube and you can hear and see her here.

As for my condition, I have returned home and no longer need a 24 hour care giver. While I was in Gainsville my wife needed a break so one of my daughters flew out from San Diego to stay with me and the wife could go home for 5 days. My daughter Brookie has 4 children so my other daughter Kjristi, who also has 4 kids pititched in and watched Brookie’s kids while Brookie’s husband was at work.

You may rember on the post before last I mentioned a young woman who had breast cancer and now had leukemia. What I didn’t tell you was that she was  also pregnant. I saw her last week and they were going to take the baby when she reached 29 weeks. Which was last week. Then they would start the intensive chemo prior to doing the bone marrow transplant.

Sometimes we think our burden in life is heavy. Then we meet a person whose burden is twice as heavy as our own.

Frank Green, Jeffrey "Hammerhead" Philips and Me

In my last post my post I mentioned I had the cytomegalovirus. I have been receiving daily infusions (seven days a week) of foscarnet  which is a drug designed to control the virus. If we can get the CMV count down to zero twice then we will discontinue the treatments but monitor the CMV counts. The foscarnet kicks my butt.

Last week two of my good friends paid me a visit. Frank Green, who has taught me more about the craft of writing than anybody. He is truly a master of the Word. He holds a free writer’s workshop in his home every Wednesday night and has for twenty years. Frank has crewed for me on my boat and I have killed him three times but each time he has resurrected. His doctor won’t let him travel with me any more.

The other friend was Jeffrey “Hammerhead” Philips who has also crewed for me. I’ve known Jeffrey for almost 20 years. He is a terrific writer and you can buy his book Murder on Devil Ray Reef by clicking on the book cover to the left of this post. It’s a terrific read and I recommend it.

It is good to have friends who support you when times are tough. They stayed with me while I slept through part of the 3 1/2 hour infusion process and then we made a quick run to the store.

Trying to knock out the CMV

Thank you to all of my friends.

Beauty in the Midst of Pollution

There are times when I expect we all contemplate death. Life is full of challenges and especially those that attack our health and our emotions. I was sitting in the BMT clinic this morning with a young lady who had breast cancer. She did the chemo, the radiation, and had the reconstructive surgery. I had been warned  in my own case that the chemo for my leukemia treatment might control the leukemia but could also cause me to get other cancers, especially skin cancers. Which it did.

Well this young lady, after going through the breast cancer treatment, now has leukemia which was caused by the breast cancer chemotherapy . They told her there was a five percent chance of her chemotherapy causing other cancers and unfortunately she fell in that small percentage.  Now she is looking at a bone marrow transplant. So what is the purpose in life of all these difficult circumstances that we find ourselves struggling through? Is this really the refiner’s fire? I have come to two conclusions. At the end of one’s life (not that I am there yet) what really matters is the type of person you’ve become during this journey. Generous, kind, considerate, friendly or maybe mean, intolerant of others, and generally old and ornery.

The other conclusion I have reached is that even out of the worst of conditions, war, pestilence, imprisonment or pollution,  small things of great beauty can be found if you open your eyes to your true surroundings. In the midst of going through this bone marrow-stem cell transplant I’ve seem to come up with something that is called  the Cytomegalovirus(CMV). About 85 % of people have this virus lying dormant in their systems. Me too. Your immune system keeps it in check and you never know it’s there. When your immune system is depressed, all of the sudden the virus wakes up, looks around and says, “hey, I’m free” and begins to wreak havoc. We artificially depressed my immune system to allow my donor’s stem cells to graft into my bone marrow. So now this CMV is beginning to grow. Those $75 per pills (4 a day) that I received a few weeks ago were supposed to have knocked it back down. And they did for a few days but it seems to be making a comeback. So now I am going in every morning for an infusion of a drug that is in very short supply. So short that the drug manufacturer only supplies it to Bone Marrow Clinics (yeah, that is us) and no where else. You can google CMV and read all about it. Bottom line, is that if we don’t get it under control it proves to be 100% fatal in BMT patients. The doctors here tell me they haven’t lost a patient to to CMV in 8 years so I’m not too concerned.

But back to the point of this post. Across the back road at the Shands Cancer Institute where the Bone Marrow Transplant Clinic is located, there is a very, very, scummy pond. I’ve heard that the motel (which is now closed) behind the pond , dumped raw sewage in to the pond. I don’t know if that is true or not but it’s about the scummiest pond I’ve ever seen. Still in the midst of this pond, standing in several feet of water and on the banks of the pond are some of the most beautiful hibiscus I have ever seen. 

Hibiscus at Scum Pond

Is there beauty even in the center of a sometimes scummy world? Yes, there is.

Frozen Towels on Steve trying to reduce fever of 103.6

First I want thank all of you who have donated to the Steve Brown Bone Marrow Transplant  Fund. Your continuing donationas are of tremendous help to me. I have to add a new drug to the plethora drugs they already have me on. They said they had to get “prior authorization” for it. So I suggested I just go ahead and buy it. It is kind of critical that I get it. I asked how much it was and the pharmacist  said a 30 day supply of these pills sells for (are you sitting down?) $6000. The donate button to the left still works. Thank you so much.

Sorry that I have been missing in action latley. These last three weeks have been particularly rough. The good news is that they did the DNA tests on me and the donor grafted in 100% . So that is excellent. Once the donor grafts he begins to reject my body. This called graft vs host disease. He attacks my various organs. So far he has attacked my skin and my eyes. 

 I have not been able to read a computera screen for 3 weeks. But it is better  today. I had to be readmitted to the hospital twice because of fevers in the 103.6 range. I was back in for 8 days. Out for 3 days and then back in for another 8. Now I am out staying in this apartment close to Shands Cancer Hospital in Gainesville Fl with a 24   Hour hour caregiver.

My good writing buddy Jeffrey “hammerhead ” Philips came up and relieved my wife for a few days as my caregiver. That was the second time my fever went off the charts. So we wet towels and put them in the freezer. Then laid them all over my body to reduce the fever. It is really very effective . But once I started vomiting we decided to head for the hospital . Good move  because I was inpatient there for another 8 days.

First I’d like to thank all of you who have have so generously donated to the Steve Brown Bone Marrow Transplant Fund by clicking on the donation button to the left of this post. Next week a choice group of authors have banded together to donate to the fund proceeds of all the books they sell on July 16, 2012 through this website. My good friend and author Jeffrey Philips has organized this event. He’ll post photos of their books with links to Amazon where they can be purchased. Some of these books are paperbacks and there will be separate links to the paperbacks. Most of the the others are e-books so you’ll need an ebook reader, tablet, iPad, or read it as a pdf file on your computer. The prices are very inexpensive you you should consider buying several. You might find a new author that  you’re never read before and fall in love the author.

July 16, it tuns out will be  a very special day for me. On that date they will do some DNA analysis, to see who is in control of my body. My donor or me.

Now on to where I am. The BMT unit here really puts an emphasis on exercise while your in inpatient. They recommend you walk a least a mile. They also offer “chair yoga” on Tuesday’s Thursday’s afternoon.

I’b been feeling pretty well and was getting my mile in every day. Then I started with the chair yoga.

They took me down in a wheel chair, I could have walked but they insisted that I ride. There is a tunnel that runs between the Cancer Hospital and what they call the north tower. After an hour wait, they laid me on a table and did an ultrasound around the CVL line. No blood clots. I could have told them that . Not that I’ve ever had a blot clot but this pain wasn’t that severe. So it was a late night that night. For the last 4 days my Absolute Neutroplhil count has been rising. It was supposed to go down to  zero and the donor’s bone marrow stem cells were supposed to graft in and the count would start rising as the donor cells grafted in and begin to get to work. But mine never bottomed out. They got as low as 160 which is pretty low but it’s not zero. Your normal count should be between 2,000 and 7,000. If your count is below 500 you’re considered neutropenic and have to eat a neutropenic diet which means no fresh fruits, especially thin skinned ones. A banana that you can peel is normally alright but Shands goes a step further and says no fresh fruit. Or lettuce or tomatoes. They want to a avoid all germs. You have to wear a mask whenever you leave your room and you can’t leave the hospital floor.

My neutrophil count began rising from the 160 level for the last four days. I actually got into the 500′s yesterday. The question is, whose neutrophils are they? Mine or the donors? They would have expected that I would show some signs of Graft vs Host Disease (GVHD). In fact they like to see a little of that as it indicates the donor cells have began to graft in.

I have been feeling pretty good, just very tired, but everyday I walk a mile in laps around the floor. All of the doctors and nurses here say that walking, staying up, moving around, biking, (yes I have a stationary bike in my room) all promote faster healing and prompt the bone marrow to produce its product in a shorter time frame.

Steve receiving two bags of platelets. Note the clock on the wall 5:20 am

Then last night my platelet count dropped to 18. Platelets are the blood cells that produce clotting of the blood at sites of injuries. Normal platelet count is between 150 and 450 so you can see 18 is pretty darn low. So at 5 am this morning they gave me two bags of platelets. I wondered what blood types the platelets were because I am A+ and my donor is B+ and they are not compatible. They split the difference and gave be platelets from some one that was AB+.

With BMTs the doctors and staff count the day you receive the BMT as day zero. Then each day after day zero increases by one. So today is day 6.  Not a whole lot to report however I have a hunch that my temperature is starting to rise. This is normal as my immune system approaches zero. Your immune system is measured by the amount of white blood cells in your body. To be more specific, there are several types of white bloods. Kind of like bees in a hive, there worker bees, drones, and queen bees. The white blood cells that actually fight infection are called neutrophils.

The normal neutrophil count is 1.7 thousand per CC to 7.00 thousand per CC.  The blast of chemo given right before the transplant is designed to bring the neutrophil down to zero. Right now mine is at 0.15. I expect they’ll all be gone within another day or so.

One of things they do to you is put in what is called a trifusion CVL line. That is line that goes into your chest and dumps into your Vena Cava, the large vein that dumps directly in your heart. I’ve had a few issues with mine. Usually only two of the three lines work. At the beginning it leaked some and now there is some pain around it, even though it has been in there over a month.

CVL in the left chest

The nurse just came in and said they’re taking me down for an ultrasound to make sure there is no blood clot in it. This is at 10:04 pm. I’m including one photo of the CVL. I hope it doesn’t  gross you out. The whole thing creeps me out.

One of the best parts of being here at Shands (yeah there is one good part) is Danielle Decosmo. She originally was a volunteer that would go to patients rooms, and to the infusion room (where there are a bunch of chairs with folks getting chemo infusions) and sing to them. She was so good that the hospital hired her. She’s terrific. I had her sing Somewhere Over the Rainbow. Here it is. Enjoy.

Working on a book the afternoon of the transplant.

I was supposed to have the transplant on June 14, but the donor’s product was delayed in flight because of bad weather. I think the product was coming from Germany but nobody will confirm that. They said it’s just like you see on television. The guy with the blood product gets on a plane with the stem cell’s in a hand carried cooler and flies directly to the US and then to the Gainesville, Fl airport. He brings it to the hospital and it goes to the bone marrow lab where they “clean it up”. Not sure what that means, but I think they try to extract any  extraneous red blood cells. Especially in my case the donor is B+ and my blood type is A+ so they are very incompatible and they were expecting some serious rejection problems.

They had the crash cart, oxygen, and  suction standing by just in case. Had me a little bit worried. I was given a bunch of “pre-meds” and including steroids starting about 8am. Finally about 10 am we started the transplant.The room was full of people, nurses, doctors, lab techs, watching the procedure. Below you’ll see a photo of me during the transplant. Actually it turned out kind of boring. They don’t want any excitement during the procedure. Boring is good. I was feeling pretty good afterwards and later in the afternoon was able to walk 4 laps around the ward. Fourteen laps is a mile.

Standing Room Only During the Transplant

My blood counts should drop considerably over the next 5-7 days until my immune system is totally down to zero.  About that time, hopefully, the stem cells will began to graft. Then we have to fight what is known as Graft vs Host disease. I’ll save that for a later blog. Over the last two days my immune system has dropped in half and then in half again last night.

During this whole chemo thing prepping for the BMT I’ve felt pretty good except for Wednesday where I felt really crappy and all of the intense chemo was catching up with me. What’s funny is the nurses come in to the room to began a chemo drip and they don all of this protective gear, goggles, mask, chemo gown so that they don’t get accidentally splashed with it. Yet it goes almost directly into my heart via a CVL line, which I’ll go into later. Makes me wonder if it’s so hazardous to them, what is it doing to me?

The nurse today told me about a guy who walked over to the other Shands north tower across the street pushing his IV cart with him. He didn’t realize that he was dripping chemo all the way and they had to call in the hazmat team to clean it up. Makes me wonder.

I was feeling well enough later in the afternoon to go back to writing a book I’m working on.

It’s hard to know where to start this blog.  So let’s start with today. Today is transplant day, and also Flag day. June 14, 2012. In April 2010 I was diagnosed with Chronic Lymphocytic Leukemia (CLL)and Small Lymphocytic Lymphoma. While by name CLL is chronic, mine was quite acute and has been very aggressive. The first CT scan showed that all of my lymph nodes were engaged, the spleen was twice it’s normal size and the cancer had most likely metastasized  throughout my body.

After two years of chemo we’ve gotten the spleen back to only slightly enlarged and the leukemia into remission. The only cure for this leukemia is a Bone Marrow Transplant (BMT). The BMT has to be done while the leukemia is in remission. My initial investigation into the BMT process revealed a particularly high mortality rate. Forty percent die during the procedure and an another 20 percent don’t make it to the first year. No way, I thought. Better to dance with the devil I know than with the devil I don’t know.

Apheresis Machine Ready to Go

But here I am, receiving immature bone marrow stem cells from a MUD–Matched Unrelated Donor. This donor is probably from overseas somewhere. They won’t tell me where. I know his blood type is B+ and mine is A+ so we expect there to be some rejection issues. They are flying the donor cells in today to the Gainesville Florida airport. The courier will bring them to the hospital where the BMT lab is standing by, working late, to “clean them up” before they are put into me.

I have been taking very heavy doses of chemotherapy for the past 5 days which is designed to pretty well kill off my own immune system and make room for the donor cells to graft in.  These donor cells are collected through a process known as Apheresis. That procedure is preceded with 5 days of twice a day high dose Nuprogen shots to encourage the bone marrow to release these immature stem cells into the blood stream. Then the Apheresis machine is hooked up to you and the blood flows through the machine and back into your body. The machine filters out these stem cells and Viola!

Hooked up for back-up collection of my own bone marrow stem cells

As a backup, they collected some of my own stem cells using the same procedure just in the event that the donor cells don’t graft they can hopefully graft mine own back in and I won’t be any worse off. Above is a photo of me hooked up to the Apheresis machine for 3 days straight.