Sue Charen

Boring is Good

"Boring is good," said the doctor on Monday. And is seems more boring all the time. Sue takes anti-nausea drugs on a time table, sleeps/naps, and nibbles on soup, fruit and frozen fruit bars. Her "numbers" are generally much better and improving. She is still fairly weak, but with rest, nutrition and boring days, should improve. Next week we will see if the the liver is better with an MRI.

It also looks like the hospital visits should taper off. All this means returning to DC for the rest of the recovery, may be next week.

In the mean time we are researching into the bone marrow transplant programs here at Hopkins and also Seattle. Depending on the potential donor availability, it may start within 6 or so weeks.

Topsy Turvy

When going into cancer treatment, your life changes dramatically. It is hard to explain in what ways, beyond the day to day travails of medical care. Whether swallowing endless pills, feeling weak, being connected to bags dripping liquids into you, wearing clothes that make it easier for doctors to probe you or endless other bizarre situations, it is hard to explain how it makes you feel. I was listening to NPR and heard another installment of Leroy Sievers talking about his own difficult experience with cancer. This blog/site is to let friends, family and colleagues keep up with Sue's condition. I would recommend reading and listening to Sievers blog to get a sense of what the experience is like.

Update: Sue had a quiet weekend except for a short Saturday morning trip to the hospital for fluids and at home IV medicine (which will continue for two weeks). She slept, ate a little, played cards, and slept some more. Today, Monday, she will be in the hospital for tests and fluids and a doctors appointment about bone marrow decisions and planning out further treatment.

Post Thanksgiving Days

Although it is nice to leave a hospital, Thursday ended up being pretty rough for Sue. She was extremely nauseous all day and most of Friday. It was decided since her lab results keep showing improving results that besides coming in on Saturday for fluids by IV, she should be fine back at the apartment. Also, to help with the liver infection, Sue will be getting an anti-fungal by IV at home. We had the equipment delivered and a nurse will be by today to show us how to give the daily dose.

Sue has been sleeping a lot since last night due especially to the anti-nausea drugs. But she also seems better to me. So for now, she will stay out of the hospital except for her frequent appointments.

Thanksgiving

Yesterday, the doctors told us that Sue was ready to leave the hospital. So today, Thanksgiving Day, Sue got to come back to the Baltimore apartment. Her white blood cell and neutrophil count was sufficient to leave and are improving daily. Her kidneys also continue to improve.

But Sue is still quite weak after weeks in bed and tough chemo. Although it should be much better in a few weeks more, it can be very frustrating.

She has been sleeping quite a bit since coming back. And since she still can't eat regular foods yet, she slept through dinner. But we are all thankful that she is doing so well. And there will be next Thanksgiving.

Neutrophils Come Back

Over the weekend and yesterday Sue's lab tests show a small number of neutrophils (important component of the white blood). Not yet back to normal, but a major positive sign. And with neutrophils, Sue should be able to heal faster, avoid her recent fevers, and better fight the yeast infection of the liver.

Yesterday, Sue ate a cracker with her soup. The first solid food in a long time. This recovery is about small steps.

Eighty-third day

There is no special aspect of the 83rd day. There have been ups and downs. Bad news and improving news. Sue is recovering and we are starting to think about the next portion of the treatment, the bone marrow transplant, although that may be two to four months away. Throughout it all, her folks (my dear in-laws) have been there. There when I was back at work. There when Sue was very ill. There when all it meant was just being there. Love.

Hard to Distingush Good from Bad News

Sue had a rough night last night when she had a hard time breathing due to extra fluid in her lungs. It was probably due to the white blood cells (neutrophils) coming back, although the blood tests haven't shown it yet. The nurses checked Sue every hour through the night, and Sue was fine. Well except for not getting any sleep. Sue took a couple laps around the hall (important for keeping the lungs clear of fluid as well as just good). She is eating soup and fruit ices, but still has not eaten anything solid for two weeks.

Sue has a had a few guests in the last couple of days. It is nice since the week and a half when she was too sick.

Dark Outside

Sue is doing fine, but the recovery is slow. She still does not have any apparent white blood cells. But she is eating soup and ices, getting up and walking in the room.

Today it is very dark outside and stormy despite being the middle of the day. There is a tornado watch and the construction site next to the hospital looks like a hole filled with mud. Rain, rain, go...

Continued Good News with Caveats

There is good news. Sue is feeling much better and even took a couple bites of soup and jello. She also is getting around better and seems stronger. Also, the last of the residual chemo is gone. Her kidneys are doing better, but still need more healing. We are hoping that her white blood cells are coming back shortly. However, her liver will still need to be cured. This should be possible with new blood cells.

Also, the bone marrow coordinator says there are some potential donors that have been matched. There is a bit of a process of finding out whether the matched potential donors are healthy enough or willing to be donors. Apparently, many people who put themselves into the registry do it just for someone they knew. We are hopeful that at least one of the matches will be willing and healthy enough. This does not mean that we are stopping asking people to participate. First, until the marrow/stem cells are actually donated we are going to be at risk of not having a donor. And second, having gone through the agony of finding out that none of her three brothers were full matches, and worrying that there might not be any other matches, we feel strongly that everyone that is able should participate.

Sitting in a Chair

Sue is recovering slowly, but surely. Today, for the first time in a week, she sat down in a chair. It was only for a half hour, but it was a sign of renewed strength. She still cannot eat, but has been drinking. All of her nutrition is fed in intravenously. Inside her mouth and stomach, the effects of the chemo are still considerable, but are going to be healing soon.

There was a short, but helpful, non-technical article about leukemia (in light of Ed Bradley). It mentions that being a donor is about as easy as donating blood. Sue has Acute Lymphocytic Leukemia and is Philadelphia positive. This appears to mean that she will need to take Gleevec from now on. In addition, it appears that the best chance for a cure means enduring a bone marrow transplant.

Thanks again for everyones calls and cards. And thanks for those who have sent in for their marrow donor kits. We realize this has been a very long episode.