Posted by: Ken Wheatley | August 13, 2009

A “Snowstorm” + MRI Results = Candid Conversation

I haven’t been totally candid about certain things because Sheila didn’t know, and I didn’t want to take a chance of her finding out prematurely.

Dr. B had called my cellphone at 2 o’clock on Monday and wanted to speak with me privately. So I stepped out of Sheila’s room and Dr. B said that she had reviewed the latest CAT scan and it didn’t look good. She wanted to meet at 5 or 6 to show me the latest scan as compared to the one from 5 weeks ago.

That’s when I found out that the primary tumor in Sheila’s left lung had increased 3 times in size. What we told Sheila was only that the tumor had increased in size. What we didn’t tell her was that she has a veritable snowstorm of tumors in both lungs – all new within the last 5 weeks. It was both shocking and disheartening to see so many.

She also pointed out the fluid around Sheila’s lungs and another tumor on the right side of her chest wall.

With this information it was clear to Dr. B that Sheila couldn’t continue in the USC trial. We didn’t tell her that at the time. We didn’t tell her these things because we felt that she had received enough bad information in one week and therefore needed a break. More important, we didn’t feel that it would alter the course of treatment she was receiving in the near term.

I wasn’t too happy that the CAT scan happened last week and it sounded like Dr. B was just reviewing them now, almost a week later. But that’s water under the bridge at this point and doesn’t alter the results. As we’ve found – like the day they forgot to turn her oxygen back on when she returned from radiation treatment, for almost 8 hours – that they, the doctors and nurses, are all too human. We tend to forget that and endow them with an aura of perfect decision making and actions.

So yesterday morning the first glitch in the decision not to tell her surfaced when the doctors from pain management came into the room making suggestions about semi-dangerous procedures they could do to attempt to alleviate the pain. It seemed obvious that they hadn’t talked to Dr. B to get the latest update, but I couldn’t say anything to them at the moment. Instead, I had to wait until they left the room and unravel  the action plan with the attending doctor.

Plus, Sheila was talking with a friend who is also a lung cancer patient and she was expressing how hopeful and optimistic Dr. B was about her future and that she, Sheila, couldn’t wait to restart the USC clinical trial, etc.. The reality was that Dr. B was anything but optimistic, and Sheila wasn’t going to be doing any more trials.

I talked with Dr. B last night and decided that we’d tell her today, but we’d wait to get the results of the MRI, if Sheila was able to actually get the MRI done last night like planned. Which she did.

It was too difficult to coordinate having an anesthesiologist present in the MRI room to sedate and monitor Sheila so that she could tolerate the pain of laying still on a hard flat table for an hour and a half. So instead, they loaded her up with various drugs to make her really tired, and Sheila was then able to do the MRI without any problems.

So…Dr. B came by today at 5pm and told us that, unfortunately, they found 2 new tumors on Sheila’s spine – one in the middle of her back and another, I think she said L12, down near her tailbone. So that makes 4 tumors on her spine. The other two are at L3 (lower back) and behind the thorax. They are checking with Dr. Lawson at radiation oncology to see if they can start treating the middle tumor in case that’s what is causing the intense pain. We’ll find out tomorrow if they can do it.

Dr. B also said that Sheila’s in a very tough place now and it’s not looking good. For the first time she’s worried for Sheila. The tumors below Sheila’s neck are not being treated, so, if the CAT scan comparison is any gauge, the tumors are growing unchecked and potentially very fast. So the first hurdle is the next two weeks while she’s being treated for the brain tumors and hopefully the one on her spine. If she gets through those weeks, then there is a drug called Alimpta that has a 10% success rate in either inhibiting the further growth of the tumors or reducing them in size.

Finally, Dr. B told us that she feels Sheila has about 6 months to live. That’s longer than she told me on Monday. She said 3 to 4 months. In any case, she encouraged Sheila to get her life in order and start preparing.

Obviously we cried and Sheila’s very sad and scared now that a finite timeframe has been established. Of course, it’s a prediction, and predictions have been proven wrong in the past many times. So we will continue to hold out hope that something major in the way of a cure will happen within these 6 months. But in the meantime, we’re focused on first getting through these critical two weeks.


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