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.

Happy New Year - 2010

It is always good to have more years and anniversaries between the time of the onset and now. And things are still very good with the recovery. The new drug is more difficult to take, but is much better in terms of side effects. And AVN (bone death in the hip and shoulder) is an aggravating side effect of the high dose steroids and chemo and it causes pain, but does not seem to need surgery fortunately. 

Generally things are getting more normal and the hope is that with all the physical therapy, Sue can become more active in the coming months. 

And there is less to report. Sue skipped her blood letting for the holiday travel, but will be back to it this week. 

Sooooooo I guess that is it for now. More soon. And have a very happy and healthy 2010!

Halloween: Warning- There Will Be Blood ... Discussed

"I want to suck your blood". Unfortunately, this is what the nurse says about every three weeks to Sue. OK, that's not exactly what gets said, but for this last Friday's blood letting session it would have been appropriate. The doctor thinks that may be by next summer Sue will be able to stop this as her iron levels might be low enough by then. The restrictions of having the permanent port necessary for Sue getting this done are a little bothersome (no golf swinging or active swimming). 

Fortunately we think we uncovered a minor medical mystery. A few months ago, for the preliminary blood test to see if Sue has enough red blood to allow for that month's blood letting, the result came back that she had more than she normally had. That seemed like good news, and cleared the way for proceeding with the blood letting. Unfortunately, the more comprehensive blood test came back after the blood was taken saying the opposite--that Sue was below the amount needed. After a week of worrying and trying not to overdo things, a new blood test showed that Sue was on the way back to normal. 

From then on till this last Friday, Sue would come in an hour early to get the more accurate and comprehensive blood test to avoid the same situation. After a test a month ago comparing the comprehensive with the pin prick test, we decided to try and go back to the pin prick and assume that the mistake had been an anomaly. However, this last Friday the pin prick came back high again. Worrying that this was another mistake, we talked with the nurse. Well, apparently there are some people whose pin pricks produce different results from what a comprehensive test would show. 

So the nurse took blood directly from the port and using the same quick tester that is used for the pin prick, did another test. And the results...came back normal for Sue, enough to go ahead, but not nearly as high as the pin prick. Well, thanks to this realization, Sue can come in at the normal time and just will get the quick test through the port rather than a pin prick--saving us at least an hour each visit and giving us another insight into knowledge that should be better known by all medical staff.

We had a nice Halloween even though Sue is a little tired and feels the effects of the blood loss for at least a couple days. 

Soon Sue will see the orthopedist about her shoulder which has some of the same bone damage as was seen in her hip. 

September Remembers

Wow, September has come and gone. Sue had her birthday fall on Yom Kippur this year, so we celebrated the next day. And Sue's folks were here for the holidays. Not much news on the health front except that Sue's shoulder has been painful and on Friday at Hopkins we had an MRI done. No results on that back. The iron levels are still high, but coming down. Sue is now on an every three weeks schedule of blood giving. Fortunately she normally is back to levels to allow that type of schedule. May be within a year at this rate, Sue can be done with this and be able to have the permanent port taken out. Sue is now down to only four prescriptions, but those may be necessary for awhile.

Sue is at work more and able to handle more generally. Recovery is very slow and hard to see progress on a daily or even weekly timetable, but every month seems to get better. Plus I've been busier myself (until I got a cold from someone at a conference despite using Purell every few minutes). 

Three Years

It was three years ago that Sue was diagnosed with Acute Lymphocytic Leukemia with Philadelphia Chromosome Positive. Sue called to tell me that her doctor had gotten the blood test back and that she must immediately go to the emergency room because of severe anemia. After receiving a few units of red blood, she was sent to a room in the hospital.

It was walking around the hallway that I saw women pushing their poles with chemo bags with infusion pumps around that I realized that Sue might have cancer. And it was in the lobby the next day that I saw the LLS table with leukemia brochures (Leukemia and Lymphoma Society). I took all of the different ones, dreading, but knowing that there was a chance that Sue...

It was not until the Hematologist came to do the tests and then get the results right before Labor Day 2006, that Sue was diagnosed with ALL. And then about two weeks later with the full diagnosis. By that time, because there was no time to spare, Sue was already two weeks into heavy chemo. Fortunately, there was a new drug that worked well, though only in conjunction with damaging and dangerous treatments and transplant.

Three years out and we look back at the both the hell and also all of the love and help from friends, family, doctors and strangers. Three years out and we are looking ahead too.

Much love,

Daniel

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).

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....