Sue Charen

Happy Birthday Sue! (Friday)

Wow. Friday is Sue's birthday. Sue is feeling much better. And doing much better than last birthday. Also Friday is a day to see the GVHD team and do labs at the hospital. It has been fairly quiet for the last few days, except for getting ready to move.

Preparing for the return

It has been easy on the recovery side. Just taking it easy. However, getting ready to leave and getting ready to arrive is a bit more hectic. The apartment kitchen is being painted this week and the place needs to be fixed up for Sue's arrival yet. And the backyard needs serious attention, being as overgrown as a forest in places. Thanks for the help and offers of help from our friends. The move itself should be relatively easy with some help in that there isn't a lot to move (I brought some stuff back today). Throw in preparing to give speech in a week and Sue's birthday on Friday, it will be busy.

Discharged

Well, today Sue was told she would be discharged as of Tuesday, her last day in the IPOP clinic. Starting next Friday she will have to come in probably once a week to see the GVHD team, have her labs done (mainly blood tests) and see her oncologist about once a month.

The meeting today with the GVHD team was very easy. Sue looks good with some residual skin dryness and some effects of the high dose steroids. And with the discharge the steroids will be tapering off to nothing over a few weeks. And we can stop some of the anti-biotics. Sue has gone from nearly 40 pills a day to half that. And as her ability to retain electrolytes gets better, that will mean fewer pills as well.

I will start packing up to go Sunday and the following Sunday we will leave the apartment here in Baltimore. It will nice to be back in the neighborhood.

Continued Recovery

Today we attended the discharge classes. We will find out tomorrow at the GVHD assessment whether the steroids will be lowered enough to allow for discharge. Essentially discharge means that Sue won't need to go to the clinic called IPOP and be as closely monitored. We will continue to go to Hopkins about weekly at least for several months (others choose to go to other places, but we are close enough and appreciate the very high level of care and doctors). Since the result from the skin biopsy came back showing a diminished amount of GVHD and Sue's other lab work shows great improvement, it seems very likely we will be discharged. In any case, we will definitely be moving on the 30th back to DC.
Some of the things that we will have to do according to the classes for at least a year include:

• constant washing of hands
• avoiding contact with small children
• avoiding gardening
• avoiding pets slobbering on your face (petting ok)
• no picking up after pets
• no sushi
• wash your hands some more
• staying away from large crowds
• wearing a mask in most outings around other people
• absolutely no sunburns (for rest of life)
• stay away from sick people or people who have gotten the "live" flu vaccine
• have caregiver get flu vaccine ASAP
• avoid air travel
• and keep washing your hands

Of course there are a lot more, but these are the ones that affect others the most. We will probably stay on the conservative side of staying away from infectious agents or GVHD triggers. However, the idea is not to stay in a bubble. Sue has some immunity and should be able to tolerate day to day reasonable exposure.  So we will continue to have visitors and get out, but cautiously.

So have an easy fast, a good new year and see you back in DC soon.

Homeward Bound

Sue is getting her hair back slowly. Very soft right now as it comes in. Not like a crew cut. Sue will likely be have her steroid treatment reduced enough to not need the heavy antibiotics she now takes next week. And we will be taking the discharge class on Thursday where we will learn how to live with GVHD potential and a vulnerable immune system (pets/no pets, shaking hands... probably not for a year, watching skin, etc). And then we need to move somehow at the end of September back to our apartment in DC.

Sue is still somewhat tired and has difficulty walking due to the chemo that hurt her nerves in her feet (very common for the type of chemo she received). But she has much more energy, was cracking jokes at hospital, and seems much closer to her normal self. We are hoping for a gradual improvement (with some aspects measured in weeks and others like the nerve damage recovery in months or years). And infection and GVHD will be a constant concern for the year.

Sue is still in remission from leukemia and has been for a year. It is strange, but all of the pain of the last year that Sue is endured is from the treatment. All of it very necessary, but very painful, debilitating and dangerous.

Last year Sue did not have a birthday as it was a very difficult time at the hospital getting her first round of tough chemotherapy. But I think she will be doing well enough to enjoy it this year. Well wishers please note that we will be moving that weekend so our address will be changing and I know even without having gone to the discharge class yet that flowers and plants are not allowed. I will of course read any comments to her blog to her. On the 28th.

La Shonah Tovah

The sun is setting here at the apartment. It was an easy, but long day at the hospital. Sue needed two units of red blood (this is expected from time to time). Sue is doing much better. We will see the GVHD team on Friday and probably Sue's oncologist who Sue will start to see regularly again when she gets discharged. We are assuming that their assessment will be good and we can start planning for the discharge later this month.

We wish everyone a sweet and happy new year.

Love,
Daniel and Sue

Frederico the Frog

Sue named the frog living in the fish pond, "Frederico the frog." The frog doesn't seem to mind the name, but is very shy. You can usually find Frederico in the morning sunning on the lily pads.

Today was a short day at the hospital. Sue is doing well, staying up over twelve hours a day, with a normal appetite, and her skin is much better. We may be able to go only twice a week to the hospital if this keeps up. We will know more once the steroid treatment decreases as they check closely to see if the GVHD stays away.

Visitors

On Saturday, two friends spent time with Sue while I ran some errands down in DC. Sue is now staying awake for most of the day. And still eating normal amounts. We had both Saturday and Sunday off. And the dry skin seems to be less dry. Tomorrow, we will be decreasing the steroid treatment again (each week, Sue should be able to reduce the steroids until it is down to zero). Sue still has to take many pills each day, but she should be down to under 30 a day. And we are still on track to moving back to DC at the end of the month.

Two Quiet Days

The last two days have been quiet. Sue is stronger and eating more. Her rash is gone and the dry skin seems to be getting better. Sue was well enough on Tuesday that the nurses let her have two days off.

Tomorrow we see the GVHD team and see how her treatment should go.

Labor Day at the Beach

It is nice when you don't have to travel to be at the beach on Labor Day. Some of my cousins came over for a cookout at the apartment. With dozens of boats floating by, three adjacent cookouts and perfect cookout weather, we had a great time. Sue ate her hamburger and fixings with no problem and stayed out (but in the shade). Since we didn't have to go to the hospital it was a very easy day as well. Although Sunday at the hospital was relatively quick at about four hours.

The GVHD doctor stopped by and looked at Sue and said she was doing very well. The last bone marrow biopsy came back negative for leukemia. And Sue is reacting well to the high dose steroids with GVHD going away. However, Sue's skin is very dry and must get a lot of moisturizer (and sun screen when outside). And there are a few other things that make the recovery from GVHD and the transplant uncomfortable, but nothing serious.