Sue Charen

House Plants

Mundane issues. Finally we have real house plants in the apartment. We have had some small plants in the last year and cut flowers too, but Sue got us to get several plants that are substantial and should last awhile. To be extra cautious we had gotten rid of all the house plants after the bone marrow transplant, a step that was recommended. And once the reason to not have them was over, not a firm deadline, but as other things were OK, like going into crowded theaters, etc., we started the garden outside. And a small plant would show up inside, but never one that had staying power. 

Now we have a few hanging/cascading plants, small cactus and a medium sized potted tree. 

Mundane, but wonderful.

Sue continues to have pain from the bone issues, but so far it is manageable. The physical therapists say she can start back in aqua therapy in a few weeks. Sue is working more and more, to the point that it is mainly doctor, bloodletting and physical therapy appointments that keep it from being very close to a full work week.

House plants. Small things make big differences.

Petty Torments Redux

So far, so good with the Tasigna. Just a little redness in the face, but the first tests went well. We will find out in a couple of weeks whether the Sue is free of the major possible side effects that can come with the new drug.

Unfortunately, Sue must still give blood every three or four weeks to lower her iron levels. And worse yet, there is a nurse that made an inconvenience into an unpleasant situation. The same nurse who got the faulty reading that I mentioned last month, was there to draw blood this Friday too. Another nurse had to come by to help when the first nurse was not able to start the process. Then after a long and unnecessarily drawn out episode we took off resolved to never get the same nurse. After dozens of different nurses you get to learn which are the few less good ones. Most have been both excellent and caring. Petty torments are to be expected in recovery, except when it comes to the care givers.

We spent last weekend in Toronto and London, Ontario wishing my mom well at the Breast Cancer Survivor Dragon Boat Races. Her team won two of their races. We saw my brother's family and had a great time. It was nice to get back to Canada after four years.

UPDATE:

Hospital was very accommodating. Sue will have a new nurse from now on.

Faulty Test

Three weeks ago, Sue went in for her blood withdrawal to draw down the excess iron. Before drawing the unit, a quick red blood test is done to ensure Sue has enough to start with. The reading was higher than normal, a good sign that Sue is producing blood even better. Unfortunately, the test was way off and she was actually a little low. Having low red blood count is worrisome considering her original diagnosis was based on a very, very low red blood count. But thanks to the faulty pre-withdrawal test, the blood was drawn and so Sue had an even lower blood level. And the doctors said to test again in a week to see how things were going. Sooooo, going into a week vacation, starting off weak and a little worried was not optimal. However, we had a good time and Sue did pretty well.

Upon arrival back in DC and due for a follow up blood test, Sue was tested and shown to be back to close to normal. Yea! And then just this Friday, Sue had a regular test for blood levels (no more fast tests that may be inaccurate). The normal test adds about 45 minutes to the process, but is worth the peace of mind. And Sue had another unit taken. Every three months Sue will have the iron levels checked. It will be great once it is in a safe range and also have the permanent port taken out.

Sue will start trying out the new Leukemia drug, Tasigna. We delayed it for the vacation and the blood issue. Sue's doctor has to examine her after two weeks on the medicine to check against some potential negative side effects. Overall the new drug has fewer and lighter side effects overall, but still can be troublesome.

My grandma is having a hard time with her health. Fortunately my folks are taking good care of her and her medical treatment is much improved now that she is in Canada (moved from Alabama).

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.

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

Bump, Bump and Bump in the Road

It has been a bit bumpy for Sue in the last two weeks. It started with her hips hurting and later while doing some chores straining her back and then getting a fever and a fever. With the fever and possibility of some infection, Sue's doctor immediately put her on a Z-Pack (broad spectrum anti-biotic). With that and Tylenol the fever went down. But then Sue was at the hospital for a visit including getting her vaccinations (baby vacs as well as the standard flu vaccine). Whether it was the other infection coming back or a vaccines reaction, Sue's fever came back. Fortunately it now seems gone.

The back has slowly gotten better and Sue is back at aquatic physical therapy and yoga (gentle).

The hip pain still is present and according to the doctor all is not great. Sue also got an MRI that showed the ravages of AVN, a condition that can cause bone deterioration. This problem is not probably going to get better and was caused by the heavy chemo and high dose steroids. It seems like the only fix is to eventually get a hip replacement. May be if everything stays the same it can be put off indefinitely, but may be something that needs to be done within one to five years. We will be checking with specialists to get a better sense of the timing and options.

And we may have a solution for the blood donation problem to ease the excess iron--a permanent under the skin port. This should allow for monthly blood draws but not interfere with swimming and showering. It will take a minor procedure to get it in, but for the next two years during the blood donation time, it should not otherwise slow down Sue's recovery.

It would be nice to have it be easier, but this is a very long road and the treatments were very tough to get through and as we know can create serious problems down the road. On the other hand, this form of leukemia has lots of new medicines that seem to make it manageable. For example, Sue may move off of Gleevec to a newer med with fewer adverse side effects.

Jewish New Year

At the beginning of the Jewish New Year, you reflect on the year past and what the future will bring. For Sue, this is double duty because being born on the Jewish New Year, she is super concentrated on what she has made it through and what is ahead. Generally Sue has been doing OK, but with some aches and pains. Recovery is a very long process and Sue is focusing on continuing to get better. And Sue was very happy and thankful for all the birthday greetings.

With the New Year upon us we wish every one a happy and healthy New Year.

A Vein Attempt

Yesterday we traveled up to Johns Hopkins for the first blood donation appointment. Unfortunately, the nurses could not find a vein that would be usable for donation. Sue has been a "hard stick," but it seemed completely impossible yesterday. There are some options that we are hoping the doctor will tell us at the next appointment in October. Sue needs to greatly reduce the iron that she has accumulated from all the transfusions she had.

Well, we will be getting away for a couple of days to celebrate Sue's birthday this Sunday. Sue has not been well enough to celebrate the last two, but we are hoping for some rest and quiet this time around in an idyllic setting.

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.