Sue Charen

Update and the new Birthday

It is really nice to get lost in normality. With Sue going to work 3 days a week and my being somewhat busy, days slip by without crises. Yes, the Gleevec seems to be causing finger and leg cramping. But Sue will try out a second generation drug that seems to have fewer side effects. Yes, Sue needs to have blood drawn to decrease her iron levels for the next two years, but we found a local hospital that can use the port Sue has rather than the long drive to Baltimore every month. And the hip is still hurting, but the orthopedist seems to think that the damage is not increasing so that the need for a hip replacement has significantly decreased.

And Sue is stronger, going to physical therapy and now to exercise in a pool session. As more time gets between the initial illness and the transplant, the road to recovery seems more forward movement and fewer steps backwards.

This Sunday is the second anniversary of the bone marrow transplant. Last years "birthday" celebration was not very pleasant (high fever, then being kept captive in an emergency room for 11 hours). I felt so bad for a friend who had us over for a day at their beach house and which turned into a crisis situation. I am hoping for an easier and more enjoyable celebration this June 21st.  

Rash Decision?

We are always on the look out for rashes. The potential of a GVHD rash is unlikely now, but possible. The last major rash was caused by a drug reaction. It will take a long time for Sue's skin to be fully recovered so other minor skin issues can crop up. But the other type of rash we are worried about is caused by the shingles, an unpleasant and very painful condition that is more likely due to the impacted immune system. Last night what looked like a rash that could be getting worse. Could it be....shingles?

We sprung into action, sending an email with a photo of the afflicted area to the doctor and dermatologist. The dermatologist said to come in. Not sure when and after waiting awhile for an answer, we jumped in the car in the morning to ride up to Baltimore. Fortunately, she could see us. And, whew, it was just a mild skin condition that a topical prescription could help with, but definitely not shingles. We jumped back in the car and came back home.

It will be nice to feel less frantic about seemingly small things, but it is still time to be vigilant. Sue still has a permanent port for giving back blood (probably for at least 18 months) which is limiting. Speaking of which, Sue found a local hospital that could take blood from the port so we could avoid going all the way to Baltimore every month. So we also found out that since we have a local place and since Sue is doing well, we will only need to see her oncologist/doctor at Hopkins every 4 months or so.

Also Sue is getting more hand cramps which are likely caused by the Gleevec so since there is another similar drug, she may be switching. Physical therapy, both aquatic and non, are going well, although her hip is still in a little pain and her hamstring has been acting up. The hip will need to be checked again this summer. But all in all, things are going well.

Respiratory Illness

Sue came down with a respiratory illness last week, just after a successful blood draw (2 down, lots more to go). Who knows where it came from, all the sick people in the hospital, someone in a store or restaurant or something. So Sue was mainly sidelined except she was well enough to stay through most of the Seder at my cousin's house in Baltimore. The fevers had subsided by the Seder and I think she is on the mend. This again was an illness that would have been very dangerous just a year ago and required hospitalization. Now we can just monitor and consult with doctors by phone and email.

Today Sue will restart her aquatic physical therapy. Two steps forward....

The Pistachio Jungle

When I was a kid, one of the "funny" jokes we told was, "What's worse than biting into an apple and finding a worm?" "I don't know, what?" "Finding half a worm!" Yuck, yuck yuck.

As I write this I am looking at a half a bag of pistachios that is supposed to be "held" as part of a voluntary recall. Apparently, before anyone was known to be hurt, a company that processes and roasts pistachios was concerned that salmonella may have contaminated pistachios. The FDA has alerted people to the recall at http://www.fda.gov/pistachios/. As it has been a week since eating the pistachios in the bag, I am assuming we are OK. And Sue is no longer being bothered by or testing positive for C Diff.

But as Sue has had a slightly bumpy health issues that do not seem to be related to the leukemia or to the effects of the treatment, it is mostly the memory and worry that are carried on. To be sure there are still the problems that still actually plague Sue, like the hip damage that still causes pain, the peripheral neuropathy in the toes, and other aspects of being on high dose chemotherapy and steroids.

But the pistachios and the realization that there is risk for everyone. Sue got another cold, and we realized we had slacked off in using Purell at every moment. Hygiene is of major importance to immune suppressed people, which Sue is no longer considered (although she is still missing her last round of immunizations to be given in six months). But we still need to be a little careful to wash before eating or coming into contact with people (please wash your hands). And we hope that we do not have to stare at our food and just hope that it was produced in a sanitary method.

(I will try to post more often realizing I almost missed posting in March altogether. Must admit been posting to my own blogs recently.)

Also, to recap a missed oddity. Sue missed having enough blood to give last time by the narrowest of margins. This Friday we go back for the the next try. Wish her good luck.

Cascading and Interconnected Causes and Effects

Let's start with the good news, Sue is on the mend.

The last month or two has been a series of connected illnesses and torments that have kept Sue less than well. And actually the string of problems were caused by issues well over a year ago. Sue had three problems that came about due to the leukemia treatment (and the disease itself), first was anemia for which Sue received many blood transfusions, second was the harsh chemotherapy that made finding veins tougher for nurses, and getting a difficult to completely get rid of GI infection while in the hospital.

So because the blood transfusions left with way to much iron, Sue needed to give back blood. In order to give blood, Sue needed to get a permanent port placed, because her poor veins were insufficient to draw blood. And due to a skin infection by an incision made while have the port placed. And to get rid to the skin infection, Sue took a powerful antibiotic, which in turn killed off much the of the good bacteria and gave the bad bacteria a chance to succeed causing a GI infection to come back. So now Sue needed to take new antibiotics for her GI tract infection. Then one of the two antibiotics caused a serious fully body skin rash.

Finally things seem to be getting back to normal. All these things would be bad enough on their own, but what made the whole thing worse is that the skin rash looked like a rash caused by GVHD (graft versus host disease). Fortunately the skin biopsy pretty much ruled that out, as GVHD can be a serious long term problem as well an acute danger. I think that Sue has come to the end of the spectacular string of illnesses and can get back the run of the mill recovery she had been having.

Antibiotic Hell

The antibiotic that Sue took for the skin infection seems to have had a bad side effect beyond those listed. The antibiotic seems to have disrupted the healthy balance of bacteria that is in the GI tract, allowing an infection probably gotten in the hospital to resurface. To counteract this new infection/overload of bad bacteria, Sue is now on two other antibiotics. The infection can be serious and therefore we have acted quickly to make sure that we are as pro-active as possible in dealing with this. Sue has been taking it easy for the last few days and seems to be slowly on the mend. There seem to have been some mild side effects, but the doctors do not seem to think that they are serious or more than the direct effect of the infection (anemia, rash, etc.).

In any case, we are ever vigilant.

Thanks to my dad for visiting in the midst of this episode and helping out.

Let the Leeching Begin

On Friday, Sue started her two year course of blood draws to reduce iron. The Mediport that was placed at the end of last year was used successfully to drain the unit of blood. Every month until the iron level is back to normal, this procedure is done. Essentially, she has to undo the liver iron intake for every transfusion she received during the leukemic anemia, the chemo and the bone marrow transplant.

Unfortunately there seems to be a slight skin infection at one of the two sites of incisions. To deal with this Sue has been put on a ten day course of a new, powerful antibiotic that can have serious side effects. Unlike any previous drugs, Sue has to carefully avoid a large number foods that contain tyramine (cheese, chocolate, aged meats...). Obviously, this is no fun, especially when already having background pain from the hip and trying to watch for various symptoms already.

And then, for Sue, was the pain of the Giant's playoff defeat.

Nonetheless we are looking forward to the inauguration which we will be watching from home only a couple of miles from the Capitol.

Happy New Year and New Normal

Every New Year is a reminder of what Sue went through, both good and bad, and how for now, every year further from the diagnosis and initial treatment is very much welcomed. It is now over two years from the last time Sue tested positive. And Sue is adapting to the "new normal," the term used for bone marrow transplant recipients and intense chemo patients to describe the new reality. The Bone Marrow Foundation sends out newsletters at key times in the recovery process. Sue just received the year past transplant one. The newsletter featured some of the things that patients must watch out for and how it is to adjust to this new normal.

One of the odd things to adjust for is normality. Sue came down with a cold (still is coughing). But except for a precautionary course of antibiotics, Sue could suffer through it like most of us. No need to run to the ER or be admitted for a hospital stay. And Sue even flew for the first time in over two years to visit family in Florida (which was wonderful to see so many in one place for a leisurely time).

As we pass yet another mark of recovery and further signs of normality, we rejoice in just being able to celebrate a new year. We also want to express our sorrow at the passing after a vibrant life of a dear friend of the family and who visited us in Baltimore and was always a joy to be with.

We wish every one a happy, healthy new year.

Love,
Sue and Daniel

3 Star Emergency Room -- The New Rating System

Unfortunately, Sue got a fever the day after the Mediport, a permanent port, was put in place. So far it seems that the fever may be caused by something unrelated to the new port and the procedure. Sue is on Cipro and taking acetaminophen and taking it easy. The fever was never very high and is now down to low-grade.

On Friday night, the on call doctor asked that we go to a local emergency room. Being very cautious is one aspect of going through a bone marrow transplant. So now we are slowly getting emergency room savvy. After the last episode in June, we swore off the last ER. This time we decided to try out an equidistant one at Georgetown (although we did discuss going up to Baltimore). Fortunately, this time the stay was much better in almost every way. Despite getting just as many tests including X-ray and needing just as many nurses to finally get blood from Sue, the overall time was only about three hours instead of the horrendous eleven hour saga. And we were much happier with the treatment. And it was not so much because of the facilities, but more the quality of care. It is true that the other emergency room was a bit crowded, but that might have been avoided had they had taken less time on less pressing cases (like ours where a doctor with privileges at that hospital for Sue called in advance to ask for only labs to be taken).

It may seem frivilous to rate hospitals, but after reading the story in the New York Times today, perhaps it will help get all of us better care.

UPDATE Monday night: The fever is now gone.

A New Building and Thanksgiving

Sue has seen a great deal of the Johns Hopkins Hospital, but today we went to a new building, Blalock. Sue went through a procedure to place a permanent port that sit under her skin. As she needs to give blood monthly for the next two years and it was too difficult to do it the old fashioned way with a needle, the doctors decided on this port. Fortunately, everything seemed to go very well. For the next week or two there will be some reduced flexibility, but except for setting off airport metal detectors (yes, the port has some metal), it should not impair much.

Thanksgiving was in New Jersey with my side of the family and it was delightful to see my brothers family and cousins, uncles, etc. I had just gotten over a cold that somehow I was able to keep from passing on to Sue. And with the holiday, it reminded both Sue and I of all of the support of family, friends and colleagues over this long haul. It seems to drag on, but really it has been a real recovery in the last six months or so. Sue is working more and more. And despite the bump in the road of the hip problems and needing the port, she is much stronger.

Here is to a festive holiday season with family and much love to all of you.