Sue Charen

Welcome News for the Labor Day Weekend

Sue has had a string of friends visiting over the Labor Day Weekend. Friends from junior high, book club and work, all stopping by our house. It has been a good weekend that started out with welcome news from Sue's doctor. Apparently the last two results from the chemo/LPs came back clear of leukemia. It is now down to an undetectable level. Sue will continue to receive chemotherapy, but probably somewhat less often, perhaps every other week. 

Although the last LP went much better, Sue still needed time to recover. With more time between treatments, Sue should be getting more energy and less nausea we hope.

Earthquake and Waiting

Sue has had a couple of intrathecal chemo treatments (direct delivery of chemo to the central nervous fluid by way of an LP, lumbar puncture). These times the chemo was an easier to tolerate type. Still the LP itself can cause a bit of nausea especially the day of. We are still waiting for the results from the last two, which will tell the doctor if she has to continue the twice weekly chemo. 

While we were waiting, Sue in bed recovering from the LP/chemo, the house started to shake and the telltale rumble of an earthquake struck. I quickly checked out the USGS site to confirm (http://earthquake.usgs.gov/earthquakes/recenteqsus/ ). 

While we continue to wait for the results, and now as the excitement of the quake recedes, I continue to do research on the potential drugs that may be helpful to Sue. New drugs are being tested that may be eventually approved for use by the FDA that could be potentially better than the one that Sue is taking (and itself is the third of the wonder drugs that Sue has been on). 

Waiting for results, waiting for new answers, waiting for FDA approvals, but the shaking yesterday did not speed up the process. But it was an interesting diversion.

Arachnoiditis

Apparently, the pain was caused by arachnoiditis which can be caused by the type of procedure and chemo Sue had. Fortunately, the effects have mainly worn off and Sue is doing much better. The steroids given to other patients have staved off this problem, but for Sue it might have helped to have more steroids. 

Due to the still apparent leukemia found in the spinal fluid, the doctor has moved Sue to having chemo more often. But, for now, not the harsher one that caused the arachnoiditis. Sue will be treated Wednesday, next Monday and next Friday possibly. 

Sue is working right now and enjoying the cool breezes from the yard. 

Very Rough Week, But Ending on a Positive Note

Sue has had a horrible week recovering from the delayed reaction to the chemo. The doctor is probably planning to avoid this type of chemo for Sue in the future. For most of the days from Monday to Thursday were in bed with pain and nausea.

But today, Sue has been up during the day for a late breakfast and sitting out on the porch and a little work catch up. And today the weather has been splendid for getting fresh air outside. I don't think she will be up to seeing the Perseid meteor showers tonight and tomorrow night unfortunately, but I think the weekend will see continued recovery.

We go back for lab work on Monday at Johns Hopkins. 

Feeling Really Lousy

Sue has had an unexpected lousy 3 days. Last week the chemo went smoothly. And the steroids probably made the next few days pretty good and Sue was able to enjoy our friends' weekend visit. But starting Sunday and getting real bad on Monday, what may be a reaction to the chemo, Sue started feeling intense pain and nausea. This combination led to sleeping and taking pain relievers and anti-nausea to limit the discomfort. 

Sue is not feeling as much pain as before and may be recovering, but it has knocked out much of her energy. We had been hoping for an easy week free of visits and able to get back to normal, but no such luck. We will see if this can be avoided the next round in about a month. 

 

Deer Munching on Leaves

Sue is resting from a very long day at Hopkins yesterday. The lumbar puncture procedure went smoothly and the chemo was delivered. Sue seemed to handle it OK, but perhaps with a slight reaction. This treatment is likely to happen every 5 to 6 weeks for awhile. 

The birds are very happy with the bird feeders and it is very restful to watch them eat while Sue sits on the back porch. Today, a deer came through the yard to feast on some leaves out by the shed. 

Back for Chemo Tomorrow

Sue will be back to Baltimore for chemo, but this time it will be through a lumbar puncture. The procedure will be done as an outpatient procedure and Sue should be back to WV by evening. Sue was back in at Johns Hopkins on Monday for labs. Generally the numbers were good, but the white count was on the high side of normal, plus Sue has had some headaches, so it was decided to move sooner to the chemo. The plan has been to do these chemo sessions once a month for awhile. The procedure will also test for the presence of leukemia in the CNS (central nervous system).

The new dosage of Sprycel has made a huge improvement in reducing the nausea level. Sue still has some, but it is much more manageable. 

Sue's Chicago family visited for a couple of days, which was fun. And our worn out old bird feeder was repainted by our nieces and nephew and is now feeding lots of birds in the backyard. 

A Week

On Friday Sue went in to see the oncologist about next steps. Sue was told to start retaking the new drug again (Sprycel). Sue had not felt great taking it before and unfortunately she has had a bit of nausea again. Sue had just recovered from the nausea from the chemo. We are working out a better schedule for the anti-nausea drugs to both keep the nausea away and to avoid to much of the sedative effect.

Starting in 2-4 weeks Sue will get monthly chemo by way of lumbar punctures to get to her CNS (cental nervous system). Although this will not be easy, it will be outpatient with few apparent side effects.

Some of my New Jersey cousins vistied as well as Sue's NY uncle and aunt. And over the weekend some of Sue NJ friends came down for a visit. So it has been a little busy, but Sue is getting her rest. 

Good Weekend

Saturday at Hopkins was very easy, with improving numbers and Sue feeling still better. And we will be back at Hopkins Monday morning for another check of Sue's numbers. 

Eat My Words

One more day... not. Actually, and unexpectedly by everyone, Sue's chemo drug level went up a little bit. That added a couple of days onto the stay at Hopkins. Finally the number was down to a safe level for Sue to leave, which we did today/Friday. And because of that odd jump in the numbers, the doctors want to closely monitor the level, so we are back for an outpatient visit Saturday and Monday (hoping they don't have us come in on Sunday too).

That being said, Sue is much improved with a good appetite and much reduced nausea and much more energy. So we are back in the house tonight for some decent sleep for the first time in just over a week. And enjoyed sitting on the back porch in the cool evening watching the birds at the feeder and the wild flowers that are blooming in the patch I made last month.