Handcuffed To The Ocean

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.