Tara Beers Gibson, PhD

My husband passed away almost five months ago, and I’m angry with  him.

Scott lost his eight-month battle with an aggressive,  undifferentiated form of sarcoma—he had just turned 38. After the initial shock  of his diagnosis and the news that his spinal tumor had already spread to his  lungs, liver, bones, bone marrow, and brain, I immediately understood there was  only one ending to this story, and we would not be able to spend our lifetimes  together to raise our two young children as planned.  

Early on, Scott looked through my teary eyes and said, “I know you  know, but don’t tell me.” And thus the denial began.

Scott was reluctant to talk about getting a will or medical power  of attorney back in September 2007 when he was diagnosed. He saw contacting an  attorney as confessing his impending death, even though I was preparing my own  will at the same time. He died less than one month after signing the forms. I am  upset with Scott for almost leaving me financially unprepared.

Scott imagined he had more time to take care of his personal  affairs. I encouraged him to write letters to the kids for their graduation,  first day of college, wedding day, first child—any moment when he could have  conveyed his innermost wishes and dreams for them. But he delayed day after day  because writing down such thoughts was the ultimate admission that he would not  be saying those words in person to his grown children.

Now I have the daunting task of being Scott’s mouthpiece and  relaying my impressions of his personal hopes and desires for our children. At  this moment, that responsibility feels hefty, but I hope with time I am strong  enough to lift it up for Scott and our kids. I am upset with Scott for not  communicating with our children directly.

Scott and I did not discuss the future and the reality that our  life journeys were about to diverge onto separate paths. I was terrified of  being left behind, a young widow alone to raise two young kids. Could I endure  it? Was I strong enough? Who would be there to support me emotionally?

We were supposed to be life partners, going to soccer games and  ballet recitals, standing proudly when our kids succeeded and comforting them  when they did not, becoming grandparents together. We wanted to travel the world  to share new adventures; now there was no more time.

During Scott’s illness, I longed to share these thoughts and  doubts with him. I was scared and needed my husband’s comfort and reassurance.  But because of the denial, we could not face the future together. So each day I  cared for him, standing beside the bed, trapped alone with my fears. I am upset  with Scott for leaving me.

Scott smiled at me at sunset one day as the kids scurried from the  car into the house to greet our dog. I paused and smiled back, and amid our  silence, the breeze carried the meaning behind his smile into my heart: “You are  strong. You can do this. You will endure. I will support your spirit. Kiss our  children for me every day. I love you.”

This is not the ending I imagined, but it gives me some sense of  permission to move forward in life. I am strong and I will endure for our  children and for Scott.

Tara Beers Gibson, PhD, serves as a scientific adviser for  

 and an associate director of scientific affairs at Physicians’  Education Resource.

Articles

Patient denial places added burden on caregivers. 

Scott's Denial

Swapping of genetic material between chromosomes 9 and 22, a  chromosomal translocation called the Philadelphia chromosome, causes CML. The  Philadelphia chromosome encodes a new set of instructions for making an abnormal  fusion protein known as bcr-abl, a tyrosine kinase that cannot be turned off and  constantly stimulates the white blood cells to grow and multiply. 

An accurate diagnosis of CML is confirmed by the Philadelphia  chromosome using conventional chromosome analysis, new labeled chromosome probes  (fluorescent in situ hybridization, or FISH), or molecular probes using a  technique called polymerase chain reaction (PCR), which is widely used for DNA  fingerprinting analysis in paternity and criminal cases.

Currently, there are several screening methods for detecting the  abnormally short Philadelphia chromosome. The most common is a bone marrow  aspiration from the hip bone that involves extracting chromosomes from dividing  leukemia cells. The method is painful and because only a few cells can be  scored, it may lead to a false-negative result. But it is still a useful test  because it can detect other chromosomal abnormalities that occasionally can be  seen in CML patients.

FISH uses fluorescent molecular probes to  locate the chromosomal positions of bcr and abl. If the two genes are fused  together in a single chromosome, their presence near each other can be detected  by the change in color. False positives may occur if the two genes happen to be  close together.

FISH is more sensitive than the conventional chromosome analysis  in detecting the Philadelphia chromosome and can detect up to one abnormal cell  in 100. As it does not require dividing cells, FISH can be done with a blood  sample as opposed to a bone marrow biopsy. Recently, laboratories have started  doing FISH using double fusion probes that score the presence of bcr-abl twice  in each cell. This increases the sensitivity and decreases the number of  false-positive results.

But the most sensitive method for detecting specific bcr-abl  mutations is reverse transcriptase PCR (RT-PCR). RT-PCR amplifies a specific DNA  sequence in a drop of blood and reads the pattern of the bcr-abl protein. Its  high sensitivity can detect even a single leukemia cell with the Philadelphia  chromosome among a million normal white blood cells. The test can detect any  residual CML disease after a stem cell or bone marrow transplant or monitor the  response to a targeted therapy, such as Gleevec.

Quantitative RT-PCR tests can measure the  actual number of leukemia cells. Results can vary across laboratories, so it is  best to get the test done at the same laboratory. Since RT-PCR has the  possibility of false positives and false negatives, the test is usually repeated  on a regular basis to uncover any trends.

 Swapping of genetic material between chromosomes 9 and 22, a chromosomal  translocation called the Philadelphia chromosome, causes CML. 

Tara Beers Gibson, PhD

Scott's Denial

v4n2 - Monitoring CML: One Cell in a Million

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