A Few Good Memes

Hello everyone,

Anna got some really good news on Wednesday, but it is tempered by the fact that Anna feels really lousy.

It’s been a while since I wrote an update, so this one might run long.

In order to explain the good news, I need to back up a few days. Anna has finished her first 3 rounds of Chemotherapy and Radiation. On Monday, she met with doctors in Lafayette to review the results of a PET Scan (a type of X-Ray) and talk about where things stood after the initial round of treatment. The PET Scan showed several new areas of concern — which all later turned out to be nothing — but which had everyone worried for a few days. The PET Scan showed new “hot spots” (white areas that might be new tumors) on her right lung and right hip. The doctors advised Anna to get a CAT Scan and then meet with Dr. Einhorn, a specialist at the IU Medical Center in tumors in unusual cases, such as Anna’s. Anna and Jason scrambled and with the aid of some dedicated radiology doctors in Lafayette, got the CAT done on Tuesday and the results sent immediately to Dr. Einhorn. That’s the background.

Dr. Einhorn said…

1. Anna’s response to the treatment is “spectacular.”

2. The tumor in Anna’s right leg has shrunk so much that they can’t physically find it with an external exam.

3. Since they never radiated the leg tumor, they know that the particular chemotherapy drugs used were highly effective.

4. The CAT scan still shows a large mass in the lower lobe of her left lung. The CAT scan does not distinguish between tumor and scar tissue once treatment begins and humans don’t have any other diagnostic tools that can distinguish between them. So he assumes that some of the mass is scar tissue and some is tumor. He has no idea how much of each.

5. He wants Anna to have her next HDR treatment — that’s were they stick the radiating device down her throat in order to blast the tumor in her in lung directly (instead of from the outside). [Anna had the HDR treatment on Thursday after seeing Einhorn.]

6. He wants Anna to have another round of chemotherapy using the same drugs. According to Einhorn, studies have shown that, if a patient is responding well to the first 3 rounds of chemo, then a 4th round is effective, but a 5th and 6th are not. [Anna will start her 4th round of chemotherapy on Monday.]

7. Given the dramatic improvement in the tumor in Anna’s leg, there is no chance (100% no chance) that the so called “hot spots” that showed up in the PET Scan are new tumors. He totally dismissed them as either inflammation or side effects from the radiation treatments.

8. He thinks it is unlikely that Anna will have surgery.

9. He is much more optimistic about Anna’s situation than he was when he first met her 2 months ago!

Anna wanted to know about her life expectancy. Dr. Einhorn said first said that the average person with her disease would have about 12 months. Then he said “We all have patients who live 5 years or more. Those are the ones who have spectacular responses to treatment and you are one of those patients.” Wahooooo! Let’s hope she has much more than 5 years.

Still Anna feels bad and is suffering some depression from feeling like her role in life right now is to be a punching bag for treatment. She has wondered whether they should stop treatment so that she can have a higher quality of life with her family during the time she has left. Over the past month, she’s had some good days, but she has also - spent a week in the hospital with a case of pneumonia that was so severe they had to call in an infectious disease specialist - been so nauseous that she throws up several times each day - spent huge chucks of time in bed exhausted - been unable to find books or books on tape or much of anything else that is interesting

People who were at the dedication of Anna and Jason’s daughter Emma might be surprised that Anna feels so bad. On that day and the several days before it, she was in really good shape. She was cheerful. She was able to drive a car. She was able to speak to the congregation (even though speech is frequently a challenge). Then a few days later she was hospitalized.

So all this goes in cycles. Some days are good, some days stink. Dr. Einhorn said that Anna should start to feel more like herself 6 weeks after the 4th round of Chemotherapy. That’s early August.

We are all hopeful that Anna can keep her spirits up until she starts to feel better.

We are encouraging her to exercise (even if that’s just a walk 1/2 down the block). We are encouraging her and Jason to take a vacation in 6 or 8 weeks. They’ve worked so hard on this thing that they’ll need some time to chill out.

Anna and Jason want to thank you all for your thoughts, support and prayers. It’s working. Anna has been humbled by the huge wave of support her family and friends have shown. She’s said to me several times that she wishes she could get all the postcards and pictures from around the world and just skip the cancer.

Many thanks to all of you. I will write again soon with ideas about how you might help over the coming weeks.