Back in for a CT Scan

Beth has had a cold and cough for a couple of weeks, and she’s still within the time period when she’s susceptible to a GVH-type of pneumonia. So they wanted her to come in for a CT scan to know for sure why she’s coughing.

An Open Letter to Robin Roberts on her MDS diagnosis

A Guest Post by Bethany Bugay

People are sending me emails about Robin Roberts from ABC’s Good Morning America Show. And I wanted to respond directly.

 

Dear Robin:

I read about your diagnosis of MDS. “MDS” (“myelodysplastic syndromes”) is a very broad category, and it’s probably a preliminary diagnosis. Thanks to genetic studies over the last 10 years, doctors can define which type of pre-leukemia you have, very precisely. They can and will come up with a more precise diagnosis.

Along with the precise definition of the disease, there are a number of new drugs which can very precisely address the specific genetic malady that you are dealing with. These drugs are better than plain old chemotherapy, but they’ll also continue to break down your body. Because this affects your blood, you may feel fatigued and lethargic. You may not be able to control your own body. Your immune system will become compromised, and you’ll become susceptible to infections, of the skin, intestines, and other things.

All of this is before they begin the “conditioning” phase, of radiation and chemotherapy.

You have a very good chance of beating this disease. There is a “cure,” in a procedure they call a bone marrow transplant, or a stem cell transplant. But it won’t be an easier path than the one you tracked with your breast cancer treatment, I’m sure.

You are already ahead of the game, because your sister is already able to be a donor. For me, the donor selection process was very long and complicated, because the doctors had to search for a “matched unrelated donor” (“MUD”).

It is all very scary even if you know that the doctors are prepared, (very prepared) for anything that comes along.

You are a very brave and strong woman. For you, this is round two of a battle with a type of cancer. You are more aware than most others what you’ll have to go through again because of your battle with breast cancer.

You said you plan to continue working. Fear of dying can be horrific. In some ways, it’s true, that work can distract you from your troubles. But the old saying is also true: nobody fighting cancer wishes that they had spent more time at the office.

You also said, “I will miss a chunk of time.” I expect that you might also lose a piece of your identity. You are a go getter, but you may not ultimately have total control of her body. No matter that you have had cancer before. To replay a hardship will maybe be harder because the expectations will differ. It may be depressing, and more emotional.

The “transplant” itself is uneventful. But when your new stem cells drain into your system, that’s when the true war to survive begins. Your body can feel completely debilitated. The process to build up body systems feels like coming back from the dead.  But you are going to do it again.

We pray for your strength to exceed what you had before, and for you to never, ever give up. Once the main battle is over, life is sweet again. You will come out of the dark, and you will even enjoy things that bothered you before, like standing in long lines at Wal-Mart, or even driving in heavy traffic again.

We pray for peace for you, and help for one going into a long darkness.

Bethany Bugay

A year ago today

It was one year ago today that we took Beth to MedExpress.

She had been working the midnight shift at Overlook Green; on Fridays and Saturdays, she was the shift supervisor and medications technician. Sunday morning, June 5, she got home late, probably around 11:00 am (from a shift that began 11:00 pm), and when she tried to get up, she just couldn’t go.

She called her supervisor and told her, there was just no way she could get to work that evening. So the supervisor suggested she go to MedExpress and get checked out.

The Nurse Practitioner took a look at Beth, checked her over, left for a while, and came back. I remember her looking at the swelling in Beth’s feet and lower legs. “You’re going to need more tests than we can give you here. Why don’t you go up to the emergency room?”

So we went up there and sat for a while. They ended up giving her the standard blood tests, and they found out that her Hemoglobin level was 5.7, a critically low level. They admitted her that night. Later during her stay there, one of the nurses told us that if she had bled out to that level (the normal is 12-15), she’d have been unconscious.

Bone Marrow Biopsy Results

Beth had a routine bone marrow biopsy on Tuesday — we’re about six months out from the transplant now. We heard some of the results of that test today — not everything is in yet, but what they did get is showing no recurrence of the disease. That puts the odds of relapse (which started off at about 35%) down to below 10%.

Initial odds weres something like this:

  • 30% cure;
  • 20% immediate complications;
  • 15% major longer-term complications;
  • 35% chance of relapse.

We had lots of “intermediate” complications to be sure, if we keep going like this, we’ll reach that “cure”.

Thoughts on a 25th wedding anniversary

Today is our 25th wedding anniversary; here is a photo of Beth and me from that day, June 1, 1987. We are both a little worse for the wear, but she still looks to me to be the same woman I married. Somewhere, there is a proverb about a homely man and a beautiful wife. I’ve often joked that we are the personification of that proverb. When I was in my early 20’s, I traveled with a handicapped Christian singer named Jeff Steinberg. Life on the road is lonely, and during those years, I wanted to be married more than anything. Beth is the wife that God gave me.

It’s true, the time goes by quickly. I can’t believe it’s been that long. I’m 52, and I have been married almost half my life, although, it’s virtually all my adult life. The good times seem to go past very quickly; the bad times drag on. We have six children, and I was present at the (conception! and) birth of every one of them. Beth had been in the U.S. Army before we met. At 9/11, she, being a long-time housewife and mother of five, wanted to “do something”. She joined the Army Reserve, thinking that this would not entail overseas duty. At one point she signed a longer re-enlistment, and not a week later, she was “involuntarily transferred” to a unit that was headed to Iraq. That was January 2003.

She served six months in Iraq, from April-October 2003. She was in the 203rd MI BN, the “weapons intelligence” group that was supposed to track down and catalog the “weapons of mass destruction”. There were no WMDs, but she was exposed to plenty of other weaponry, including ordinance and tanks, which contain depleted uranium, and thus a low level of radiation. We can’t prove it, but we think it’s very likely that her exposure, either to DU, or to benzene from (diesel fuel) burning trash and waste, that caused her recent bout with leukemia. Military service and leukemia form the book-ends that have shaped the second half of our 25 years.

In spite of the quickness of it, I’m eager to put these last 10 years behind us. Marriage is a gift; that we seem to have more time is another gift. It is hard to describe the feeling I have. To be sure, it has been difficult. And there is certainly a sense that we want more time together. We have spent far too little time alone, it seems. We’re going to do some of that this weekend, Lord willing.

They brought me a chair!

They do these bone marrow biopsies in the post-op recovery room, and reactions to my presence here varies, from those who are friendly to those who want to kick me out. But today is the first time they ever brought me a chair!

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