July 23, 2012

Perspective, a father’s: Worries about Cure

Worries About the Cure

 

We continue with Judy’s father in this final post.

 

When you have been told there really is no hope for your child, and then, after more testing and surgery, another doctor says. “We are going for the cure,” you are too overwhelmed to think of all that the word “cure” may imply. You learn over time that the word cure is used for cures that last five or more years, and you struggle to grasp if that can be true. What never entered my mind in those days was the question, what if the cure itself produces other serious problems.

 

It is not that the questions about how radiation treatments intended to kill cancer cells affected other cells, did not cross our minds; it’s just that radiation was the ONLY option available, and so, we moved forward.

 

We were allowed to be present when Judy was examined to see the location of the tumors within her chest during her first visit to the fluoroscope. Judy was put under the fluoroscope, a machine which gave an x-rayed sort of TV picture of her chest and neck and allowed the physicians to map out where the radiation treatments would need to be aimed and delivered. Purplish/red marks much like tattoos were drawn on her chest and neck to make “boundaries” for the radiation.

 

Sylvia and I had to wear large lead aprons to protect us from the radiation put out by the x-rays of the fluoroscope. What in the world, we thought, is the likely damage all that radiation will cause to Judy lying directly under that machine, as the x-rays bombarded her totally unprotected body when we, merely standing off to the side, had to be protected by lead aprons!

 

How could this not be harmful to Judy?

 

Similar worries came from the daily visits for the actual radiation treatments.

Sylvia had to make most of the trips for Judy’s radiation treatment. Butterworth Hospital (now called Spectrum) had recently obtained a new linear accelerator. This was quite an advance over the older form of radiation treatments, cobalt. The linear accelerator could focus the radiation much more specifically; therefore, any stray radiation and the subsequent side effects should be minimized.

 

Judy really felt pretty good most of that time, and since no radiation went to the abdominal area, she had only minimal nausea. For us as Judy’s parents, the difficulty was seeing the other people in the radiation waiting room, all with similar purplish/red marks showing where their radiation treatments would be focused. They, as Judy also noticed, were all elderly people, some very old and frail. These people seemed to be getting radiation to add a year or two to already lengthy lives. What was a fifth grade girl doing in such an environment?

 

It was hard to remain hopeful as we watched these old people shuffling around in their hospital gowns next to our young daughter, both getting basically the same treatment. Could we too expect only a few more years of added life for our Judy? Was it the case that the radiation treatments were so harmful that they could be safely used only for these elderly people, since they would probably not live long enough for the harmful effects to reveal themselves? If yes, then what does this mean for our daughter who was only ten years old!ut our daughter was only ten!

 

The radiation Judy received then was much more intense than would be used now. Her skin inside the outline marked by the radiologist’s red marks turned reddish brown, similar to a severe sunburn. But after a time that exact same pattern of burnt skin showed up on her back. The radiation had penetrated all the way through from the front of her chest to the back! What must the radiation have done to all the cells inside? How much damage was being done there? Had the radiologists or the medical profession sufficiently studied what those harsh rays could do to otherwise healthy and growing cells?

 

These were the intense concerns and worries I wrote already about in Judy’s book more than 10 years ago. Judy’s book gives a thorough account of the variety of health problems and new cancers she dealt within the first three decades after her cure, all caused by the life-saving cure.

Our concerns of 4 decades ago have proven legitimate as Judy has faced thyroid and breast cancers. Both of which were the direct result of her radiation therapy.

A mere ten years ago it seemed there was no concern for heart damage from the radiation. Today, however, we know that that radiation which cured her had left a devastating trail of damage, life-threatening damage, to her heart, damage for which now the only cure is a new heart.”

 

Late effects of cancer therapies is a story that has been told primarily through the lives of children [and] adolescents who have outlived their original cancers long enough to appreciate the impact of those curative treatments on their personal health and wellbeing.

 

In 2012, early detection and intervention is the goal, lifeline [and] prevention is a dream yet to be realized. Researchers and medical institutions in relentless pursuit of the dream are not lacking; research dollars are lacking.

 

The challenge is to begin with the end in mind. In myHeart’s mind, the end should be the eradication of the malignancy embodied by an emerging healthy, vibrant individual full of hope and a sense of a future without fear of late effects or at the very least informed and equipped regarding the potential health risks and a plan for lifetime follow up.

 

If you would be so kind as to leave your thoughts, lived experiences in the comment section below, myHeart would be appreciative. Also, if you know someone who might glean some benefit from this post, please share it with them.

 

Simply

StephieDee [and] Judy 


 

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