Posted by: Ken Wheatley | June 23, 2009

Big Setback

It would be a gross understatement to say that today is a very bad day.

We met with Dr. B this morning at 9 and the news was that there are innumerable, apparently new, tumors now; the original tumor in her left lung has grown 50% in 6 weeks and is now back to the size it was when all this started in January 2008; the other existing tumors have increased by 20-30% in the past 6 weeks; there may be a tumor on her ribcage; and something wrong with the spinal discs behind her thorax.

But the worse, and most immediately threatening issue, is a tumor in her right lung that’s protruding into her major airway and partially blocking it. That’s why she’s having trouble breathing and coughing so badly.

So at 10am Dr. B called the pulmonary surgeon to see if he could operate on the airway tomorrow and remove that part of the tumor, but he said that it’s in an area that he can’t reach, so surgery isn’t an option. The tumor, which appears to be surrounding the airway tube, is about 2 inches long.

While Dr. Bwas talking with him, she sent us to radiation oncology for a consult with Dr. Lawson. He feels confident that radiation therapy (RT) would have an affect on the tumor site, but of course can’t guarantee what those results will be. He did say that it won’t eliminate the tumor, but should at least reduce it enough to open the airway again.

So he immediately scheduled her for a CAT scan/simulation at 3pm. That’s a procedure where they find the tumor site and mark – or tattoo – her body where the lasers have to line-up the radiation beam each time for treatment.

Dr. B and Dr. L both said initially that we would start treatment tomorrow, but by the afternoon Dr. L said that he wanted to start today. So after her simulation, which lasted about a half hour, they scheduled Sheila for the RT center at 5pm. The procedure took about 20 minutes.

So she’ll have RT everyday for the next two weeks, not including the weekends. And then they’ll check her 6 weeks later again to see what the results are. That’s how long the radiation continues to react with the cells. It doesn’t kill the cells instanteously.

Of course, Sheila didn’t receive chemo today. She’s out of the trial. It’s obviously stopped working.

Unfortunately, there aren’t any more trials that she’s eligible for in San Diego, so we now have to go to the City of Hope hospital in Los Angeles, or the USC Medical Center, also in Los Angeles. We’ve called the two doctors at USC to file for an appointment and should hear something in the next couple of days. It was too late to call the doctor’s office at the City of Hope. So we’ll do that tomorrow.

We’re at a crossroads of future trial eligibility. Sheila’s had three different treatments and most trials won’t take you if you have four or more. So this next step is critical. If there’s a trial that she’s eligible for and, god forbid, it doesn’t work, then our only option going forward is palliative care – care that treats the symptoms, but not the cause.

We’re also going to inquire about MD Anderson in Texas. They have a great reputation as well. But all of this has to happen within the next two weeks so that we’ve lined up a course of treatment that she can start after RT ends.

Needless to say, we’re scared and sad at the same time. We feel like the walls are drawing closer and our escape options are dwindling. It’s such a frustratingly helpless feeling. How can the cells be so “intelligent” and seemingly indestructible?

We’ve had our dark periods before and within a day or two our resolve rebounds, but it sure gets more difficult each time. I’m truly amazed at how stoicly Sheila handles the news now. I don’t know if it’s denial, or steel spine fortitude. I don’t want her to suffer. I don’t want to lose her. We still have adventures to do….

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Responses

  1. Sheila & Ken,
    As always, we are there for you two and maintain good thoughts and send our best wishes.

  2. Thanks Joni…Steve’s called a couple of times, so I thanked him over the phone…


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