Sue Charen

Visit

Sunday is getting better. Uncle and Aunt came down from Long Island to say hi. They brought food, including the delicious soup that we have been having from time to time (except Sue who can't eat reheated food). Sue is up and eating (crunchy, peeled apple).

Sleep: Nothing to Yawn At

Days of sleep interspersed  with  nausea, pills and clinic visits. Naps, and more naps. Sue takes Ativan among other anti-nausea drugs. And then sleeps, sleeps through otherwise upset stomachs.

Right now she is sleeping. When the phone rings, "yes, Sue is sleeping," becomes the common refrain. We are one and half weeks into a 4 or so week chemotherapy regime.

And then there is the wild weather. The wind blows very hard. And now the sky is perfect blue, no clouds and sun permeating the corners of the apartment. I took a short walk this morning and the sun beat down warming my face, and the breeze making me pull my coat closed.

Last night the walk included flying obstacles, the wind whipped up cardboard and pebbles. It was dangerous walking face toward the blowing. And at night the rain pelted the windows.

And Sue sleeps some more. I hear the Giants are winning.

To the Marrow

Right now Sue is waiting to hear back as to whether there are bone marrow matches. Her brothers were only half matches.

Many people have asked me how they can add themselves to the marrow registry to see if they are a match for Sue. Below are some of the facts of bone marrow donations.

• Except for siblings, matching is only done for universal registries.
• Becoming part of the donor database takes time (ordering the kit, sending it in, having the DNA testing for the key match points). Two months or so.
• The chances are very low that you personally will be a match for Sue.
• The chances are much better that you may be a match for someone else--someone whose life you might be able to improve or save.
• Testing usually involves a cheek swab or in some cases a small blood sample.
• The normal cost of donating your potential match is $52 (I know it sounds ridiculous to charge someone for something like this, but that is the reality).
• It would be great if everybody who was a potential match was in the registry, but this is not the case.
• Generally, the procedure for harvesting for donation is safe, easy and usually painless. See the National Marrow Donation Program for more.

So, please, consider donating some time, money and effort to adding your potential match to the registry. Either individually -- http://www.marrow.org/HELP/Join_the_Registry/Join_Now/join_now.html?src=text
-- or as a group through your community, everyone can participate.

The Longest Day

8:20 Check in (times are approximate)
8:30 Vital signs taken
8:40 Lay in a bed getting saline solution and chemo

then there was several hours getting platelets, waiting hours to get the lumbar puncture, two hours getting a unit of red blood

6:40 it is finally over

feeling better and happy to be home. time to take pills, watch tv, take more pills.  sleep. and back at the clinic by 8:30am.

Rough Day

It is a rough day when Sue is not up for a Giants game with her brother, Michael, here too. The chemo has made her pretty nauseous all day and unable to keep everything down (but Sue was able to take her pills and some food after lots of anti-nausea drugs.

Michael spent a lot of time helping me get up-to-date scientific papers on bone marrow/stem cell transplants vs. just Gleevec+chemo. Lots of foreign terms for me (a little dizzying), but it helps to better understand the options.

Weekend Roundup

Well, there has been a bit of news since the last post. Since I wasn't feeling great, I stayed in DC and rested. I am now back in Baltimore. Two of her brothers, Jeff and Michael,  are visiting, and  sitting around watching football.

News:
Sue's bone marrow biopsy was found to be clear of Leukemia. This means that the chemotherapy has been effective. It does not mean that the Leukemia is gone, just that it has diminished greatly. The second round should push it to zero/complete remission.

Unfortunately, none of Sue's three brothers was a full match for bone marrow transplant. If Sue is to get a bone marrow transplant, she will have to find a match in the national marrow bank. I will be posting more information on what it takes to be a potential donor.

I went to a conference at GWU Hospital sponsored by the Leukemia and Lymphoma Society. It was very helpful at finding out many of the issues related to the treatment. I will relate some of the information later. I also want to thank the other attendees and the former patient who gave both helpful information and hope.

That's the wrap up. More soon.

Warning: Roll the Window Down a Little

With two days off, Sue was able to do some traveling sort of. This morning, Sue's folks drove to the Kosher grocery with Sue. And Sue got to wait in the car, so they rolled down the window a little--you know the sun was out. ;-)

Then Sue went for a short walk by the Inner Harbor with her mom. Then she had a long nap.

Tomorrow, Sue goes back to the hospital for what may be daily chemo treatments and followups. We haven't been told for sure when the treatments would start again.

Yesterday, I felt I was coming down with a cold or something, so I am still down in DC. I am sorry I missed keeping the site updated yesterday (esp. in light of recent comments). I feel better and may be back up there soon. I will continue to update from afar till then.

Also, it looks like Sue's dad and I will go to a Saturday conference on bone marrow transplants to learn as much as we can about the care and issues related to the procedure.

Biopsy

Today was the day for the bone marrow biopsy. This is the first biopsy since the beginning when a couple were done. We have not heard about it yet. No matter what it shows, later this week the second phase of induction will begin. This is a month long round of chemo.

And Sue will have the next two days off.

Sunday at Baltimore

Today is a lazy day around the apartment. Without having to go to the hospital, today Sue could get rested up. Without much of a fever and a bit more energy, there was a little bit of football watching. Sue's folks took a walk around the Inner Harbor. Then I walked around a little later. Sue got a few calls and was up to talking.

And it was a great day to walk around. I will post some pics today of the view today from the balcony.

Coming Back from the Hospital

The ride home today from the hospital was more fun, because it was around the time that mail is delivered. Today there were three cards. Sue was really happy to get them. It is so nice to get feel connected to friends and family.

Sue wanted me to make sure to thank everybody for their cards and messages.

Today was also better than yesterday in that although it was an eight hour hospital visit, she received two units of blood. Now she has much more energy. The fever still shows up from time to time, and the Cipro is still causing some nausea, but between the blood and cards (and a little tv) things felt better.

Oh, yes. And tomorrow she has off.