Sue Charen

Good News Tempered the Stories of Others

First, the great news: Sue's bone marrow biopsy test came back negative. That was expected, but still very welcomed news. Sue has felt stronger and stronger, especially with the week at the beach. Today she started swimming (on top of a weekly gentle yoga session started a month ago).

Last week, Sue was deeply moved by Barack Obama's memory of his mother's cancer treatment.

"And -- and as someone who watched my mother argue with insurance companies while she lay in bed dying of cancer, I will make certain those companies stop discriminating against those who are sick and need care the most."

This reminded us of our own attempt at the Mayo Clinic Health Care Reform Symposium to argue that reform should include stop victimizing patients already coping with serious ailments. And Sue has been taking part in online discussions with other cancer patients, most of them young and trading tips on how to get the money to obtain life saving treatment.

As we count our own blessings, we feel for the others that struggle with cancer and then also have to struggle to get care in their weakened state. Thank you all who have helped Sue with her recovery and thanks to those who are helping other families.

Petting the Ponies

It was a good weekend and Friday doctor's appointment. On Friday Sue got what will be the last scheduled bone marrow biopsy and will now only need to see the doctor once every other month. Sue's recovery from the transplant is going well. Also the doctor mentioned that all of his ALL Philly + patients for the last few years that have gone through what Sue has gone through are doing well, and that other doctors seem to be seeing similar results. This is very hopeful news. Also, at the next doctor's appointment, Sue will start getting her vaccinations (just like a baby would). And although the doctor visits may slow down, Sue will have to go in at least monthly to donate blood (though it will just be thrown away) to help reduce the too high iron content.

On Sunday while visiting with friends in the country, Sue got to go to a stable and pet some horses. Sue used to ride for many years and it meant a lot to get out to see some close up. And we got to spend some quality time with very friendly Malamute dogs.

I want to personally thank Sarah Singer of the Leukemia and Lymphoma Society for her great help over the past two years. I received notice that she is leaving after many years to work elsewhere. I will personally miss her very much, for reaching out on several occasions to help Sue, my friend J, me and so many others. From the very beginning of this long journey when I called the Society to learn as much as I could when Sue was just being diagnosed to checking in to see how things were going with Sue, Sarah has been a rock, a resource and a friend. I wish her well in her new job and I know she will be very successful and a great help to others. Thank you from the bottom of my heart.

Back From the Beach

Sue and I are back from Rehoboth Beach. We had a great time sitting on the beach, walking the boardwalk and taking a week long break from the norm. Some of our family who stayed at the house with us saw a big improvement in Sue's strength and condition in the last few months. And the tent we got for the beach was great for everybody to stay out of the direct sunlight and kept Sue from getting a sunburn.

The water was a bit cool and Sue only took a dunk or two and did some wading. Sue had been not allowed by her doctors to go swimming up until recently (both because of the permanent port she had as well as avoiding infections). Bit by bit things are getting much better.

Friday in Baltimore

Getting closer to normal every visit now. The doctor says the petty torments should be receding now and that things would get closer to normal. Sue now has a reaction to wine and beer (probably anything with alcohol) which started only fairly recently, but may stick around. And it is time for the one year post BMT (bone marrow transplant) for a bone marrow biopsy next month. Also, next month begins a year long monthly phlebotomy (sounds better than blood letting) to get rid of the excessive iron build up from all of the transfusions. But other than this, things seem very good and the recovery is right on schedule.

Tomorrow we will be going to the beach for a week (the closest thing to a real vacation in over two years). And besides avoiding getting a sun burn, Sue is allowed to swim in the ocean and generally do what she can. And all this will help get her strength back from the very high dose steroid treatment for GVHD (the kind that hurts muscles). On to Rehoboth...

1400 Pill Cups

Sue's folk visited us this weekend. And Sue's mom brought 1400 pill cups (or 1400 plastic shot glasses depending on how you plan to use them). Although we have tried to reuse them by washing them, it is not worth it. Sue takes medicine about four times a day and having a clean pill cup helps. But finding the cups can be difficult. So Sue's mom has been bringing them on her visits. But this time she figured she would bring us a year+ supply. Every Sunday I set out the pills for the week in a week supply pill box (7 days by 4 times a day).

Eventually I hope to create an medication application to help organize all of it. During the heaviest pill taking days I used spreadsheets. Now with only 12-15 pills a day, that level of organization is less necessary. I have some friends who have shown an interest in helping with this project. It boggles my mind how people who are infirm juggle all the medicine that is prescribed to them.

Also, Bruce commented on the last post. And we are passing on to him any comments/thanks we get.

Bruce

After a year of waiting, the Bone Marrow Foundation allows bone marrow recipients and donors to know each other if both parties agree. I think a year is a good time frame as the transplant has at least a year long recovery and I am guessing that a little space to consider whether to communicate is a healthy thing.

Treatment of Sue's form of Leukemia depends on a donation from another person (some other diseases use self/autologous transplants). None of Sue's three brothers were a full match (each had a 25% chance). So Sue depended on someone out in the public walking around healthy with a closer blood genetic match than her brothers. Out of the millions of people registered for bone marrow donations (but most people have not made themselves available to be found), there were around fifteen potentials.

But Hopkins only recommends marrow donation (as opposed to peripheral stem cell donations which are based on harvesting the stem cells from the blood of the donor). Although there are ongoing studies to compare the success of each, Hopkins had reason to believe the advantages of the marrow donation outweighed the negatives (for example, lower level of GVHD-the foreign immune/blood system attacking the recipient versus a couple days longer before the new blood system starts working). Unfortunately this difference kept some of the potentials from donating.

But there was one.

We knew it was a man on the east coast of the US. I scanned the flight schedules guessing which city it might have been as we knew when the donation was to arrive at the local airport. Until the marrow arrives in the room and given to the patient there is a bit of anxiety as the patient's old blood system has been destroyed by chemo and only a donation in a small window can well.... you get the idea.

Little did we know that the donor was being asked even to the last minute whether he continued to consent (I knew that a donor could pull out at any point, but I figured once the person gave consent that the doctors would stop asking). Although the donation procedure is not very dangerous compared to many others and outside of scars the body recovers quickly (the body rebuilds the marrow, unlike a kidney donation). But it is uncomfortable and I did not know that there was a tremendous amount of paperwork and it seems very little assistance to the donor.

It is sad that most potential donors have to pay to be part of the national bone marrow registry in this country. Donors are saving lives and should not be allowed to have to be inconvenienced beyond the actual donation by paying or losing time from paid work.

So who are these heroes that step up to save lives of unknown recipients by being donors. In Judaism there is the notion of Tzedakah which tells us how to treat others with justice. A great rabbi suggested a scale of Tzedakah with the second highest form that of giving anonymously to those that do not know who the giver is. But the highest form of Tzedakah is when the donor gives the recipient the means and opportunity to not need continued charity. Truly, a marrow donation is that highest form of Tzedakah, because it gives the recipient to new blood system so that the recipient's own body can produce the blood and immune response that is necessary for life (no longer does Sue need donated blood).

25:35     When your brother becomes impoverished and loses the ability to support himself in the community, you must come to his aid. Help him survive, whether he is a proselyte or a native [Israelite]. *Leviticus 25:35

In all the waiting, in all of the anxiety, in all of the hoping, into our life came a person who gave Sue the chance to live and thrive, who actually gave a part of themself not knowing who it was that was being saved and at some effort and surely some trepidation.

So it was a wonderful thing for Sue to be able to tell her donor

Thank you Bruce.

Fireworks and Going to Work

Well, it has been quiet at home and work...except for those loud fireworks on the fourth. Sue and I went down to the mall (ok, a building on the mall with a spectacular view) and saw an awesome display. I posted two of the photos in the gallery.

Fortunately things have quieted down in terms of health issues. Sue is doing more work these days and getting out a bit more. But not really much to report. Next doctors appointment is on Friday.

Hope everybody enjoys the weekend.

The Perks of Great Doctors--Email

Being an out-patient has been made much easier by several of Sue's doctors by corresponding by email. It has cut down on phone tag and even the number of appointments. And the peace of mind that it has often given Sue is considerable. Last night Sue had a third reaction to drinking wine. Like the last two times the physical flush faded in less than an hour. This time we took a picture and emailed it in to the doctor. He let us know what type of allergy this was likely to be (hmmmm wondering if this was inherited from the donor) by email. Last year the GVHD team even requested being emailed with pictures of any rash so that they could rule out a GVHD rash. And at one point we did and got back word quickly that it was just a regular old rash.

There are a lot of ways that technology can make health care better and help patients. I think email is one of the easiest and most friendly and we are very grateful for doctors use it.

Feeling Better

Sue is feeling much better and seems back to the "normal" pace of recovery. It's been a tough June with the effects of the lumbar puncture/arachnoiditis/steroid treatments and the crazy fever that may have been viral or something else that did not show in the labs. Hoping for an easier July.

A Strange Anniversary of the Bone Marrow Transplant

On Friday, Sue and I went to Hopkins for an MRI and doctors appointment. Fortunately and as expected, nothing in the MRI showed that there was anything other than the suspected arachnoiditis (inflammation of the spine). And fortunately the steroid treatment seemed to have been successful and much of the pain and numbness is gone.

We then traveled down to Lake Anna in Virginia where a friend had invited us to their wonderful house. We were planning to have a quiet weekend by the water and celebrate getting through a tough year since the "rebirth" of the bone marrow transplant. The rest of Friday was relaxing and our friend was wonderful, cooking us a dinner overlooking the lake.

Unfortunately, Sue woke up on Saturday with a very high fever and nausea. The on call doctor, after hearing the symptoms said that if the fever came down with tylenol and no new symptoms, that we just needed to get to a clinic that day to take cultures and probably start antibiotics. The fever came down quickly and mainly the nausea passed which made the 90 minute trip back to DC much easier.

But, assuming that we could just go to an emergency room to quickly get the labs taken (Sue's DC doctor called over to let the hospital know that we should have the cultures taken and not have to stay for treatment assuming that Sue continued to feel better and the fever was under control). But this was not going to be a celebratory birthday or even an easy ending to a tough morning. The local emergency room folks had their own way of helping us with the anniversary by dragging out the normally half hour process into an over six hour marathon.

Instead of the normal one nurse or tech to draw blood, it took three over the course a few hours. And then there was a battle of the wills on whether they could add on even more time to get an x-ray that Sue's on call doctor had not asked for. And although Sue was taking their foibles in stride since she felt better, it did prolong how long it took to get home and start to recover. By the end of the long day, the doctors found a sign that it was probably just the type of infection that Sue, Sue's doctor and I thought was the cause. And then we left with the same prescription that the doctor had told us we should be getting.

Sunday has been much better with tylenol and the anti-biotics seeming to work quickly to make Sue feel more comfortable. It also made us realize we could have saved a few hours by driving all the way to Baltimore/Hopkins to get better treatment despite the extra two hours of road time. Anyway, all in all it was not so bad and gave us some entertainment to see how different hospitals can be. And perhaps, a relief that things seem to be getting better despite these little bumps in the road, as after all a comical six hours in a local hospital seems so petty compared to the really dangerous and difficult time of the Bone Marrow Transplant and chemotherapy of almost two years.