I'm sitting next to Chris, trying to offer him comfort. I'm afraid that I'm not doing a very good job. If you've read his post (located below), you know that I had a shady result in my blood tests. I'm showing 3% blasts in my blood work and according to my nurses and transplant team, it's not unusual to have 0-5% blasts in your blood. Sometimes, it just happens.
Chris is ready to climb the walls and eat the drywall, he's so tense. He's really worried about what my bone marrow biopsy will reveal today. The APN put a rush on the order, so we might know something in 4 to 5 hours. They've promised to call us when they know something. These will only be preliminary results. The full diagnostic will be available sometime next week.
As for me, I'm not going to worry about it until I have to. I feel well. My appetite is good and I'm not exhibiting any of the signs that I did when I was initially diagnosed. I've been warned by my doctor that it could be nothing, but we wouldn't know until the BMA came through. He also said that he wasn't sure that it was a sign of a relapse, since my other numbers were coming up. Either way, I'm going to sit tight until we hear something definitive.
Over the last seven months, I've been poked and prodded more than I care to think about. This is just another little bump in the road. I've been warned of pneumonia, CMV, CMV pneumonia, herpes, staph infection, CVC infection, bacterial infection of various sorts and body parts, and fungal infection. The boogey man is microscopic and there is very little that I can do about it, other than take it one day at a time.
Faith and determination have taken me a long way and I'm not about to give up now just because of this.
Friday, July 27, 2007
Helplessness
Day +58 (D 196)
I am sitting in the BMA clinic on the 7th floor at MDA. Today I am very nearly heartbroken and feel helpless.
Our CBCs from clinic today confirmed that Ann needed to get a bone marrow aspiration so that the presence of leukemic cells could be confirmed or ruled out.
The blast cells measured in Ann's peripheral blood rose from 2% to 3%. While this is not a terribly large increase it does beg the question as to why the little bastards are there at all.
This is in spite of Ann's platelets and red blood cells continuing to rise.
The possible scenarios that I outlined in a previous post that could have lead to the presence of blast cells have all been ruled out and discounted by the transplant specialists.
They believe there are only two conditions under which blast cells would be present in any volume in peripheral blood. The first is due to marrow regeneration and the second is the presence of leukemia.
MDA says that they will try to get the preliminary results of the marrow aspiration to us by the end of the day. The doctor did note that a similar thing happened to another patient and resolved itself ...
What does this mean? Is it a relapse or a just a minor complication?
I am sitting in the BMA clinic on the 7th floor at MDA. Today I am very nearly heartbroken and feel helpless.
Our CBCs from clinic today confirmed that Ann needed to get a bone marrow aspiration so that the presence of leukemic cells could be confirmed or ruled out.
The blast cells measured in Ann's peripheral blood rose from 2% to 3%. While this is not a terribly large increase it does beg the question as to why the little bastards are there at all.
This is in spite of Ann's platelets and red blood cells continuing to rise.
The possible scenarios that I outlined in a previous post that could have lead to the presence of blast cells have all been ruled out and discounted by the transplant specialists.
They believe there are only two conditions under which blast cells would be present in any volume in peripheral blood. The first is due to marrow regeneration and the second is the presence of leukemia.
MDA says that they will try to get the preliminary results of the marrow aspiration to us by the end of the day. The doctor did note that a similar thing happened to another patient and resolved itself ...
What does this mean? Is it a relapse or a just a minor complication?
Tuesday, July 24, 2007
Widespread Panic
Day +55 (D 193)
Ann's CBCs for today...
WBC 9.80 K/uL (4.0 - 11.0)
RBC 2.96 K/uL (4.0 - 5.0)
HGB 9.80 G/dL (12.0 - 16.0)
PLT 264.0 K/uL (140 - 440)
Lymphocyte Absolute Count 0.98 K/uL (1.0 - 4.80)
Neutrophil Absolute Count 8.23 K/uL (1.7 - 7.30)
Monocyte Absolute Count 0.39 K/uL (0.08 -0.70)
Neutrophil Percent 84.0% (42.0 - 66.0)
Lymphocyte Percent 10.0% (24.0 - 44.0)
Blast Percent 2.0% (0.0 - 0.0)
...
Panic: Defined as the primal urge to run in fear, or an overwhelming feeling of fear and anxiety. Also as sudden mass fear and anxiety over unanticipated events. Today I feel like the last definition is the most accurate in the context to today's CBC.
The results of Ann's CBC certainly fall into the category of "unanticipated events" mainly due to the presence of blast cells. Blast cells have been present in Ann's blood three separate times. First when we came to MDA, 193 days ago when there where so many of them in her blood that she was bordering on a stroke. Second after she was in remission and Neupogen was being used to regrow her marrow after chemo. Then finally today.
The problem with the blasts on today's CBC is that today is not 192 days ago and Ann has not been on Neupogen for almost a month. That left a couple of uncomfortable possibilities in my mind when the transplant APN handed us her results. The first was a clinical mistake...possible but not likely. Maybe those 2 cells out of a 100 counted where the baby stem cells reacting to something, or maybe it was a relapse.
It was the last possibility that sent me over the edge today. I should note that when I say "me" I mean me and not "me and Ann". Ann is quite the cool customer and very little fazes her. Fine I freely admit to being a worry wart. That is what Engineers are supposed to do, worry and obsess over the small details that foul up otherwise well laid out designs. So 2% blast cells looked like the end of the world to me around lunch time today. By contrast Ann wasn't bothered and actually took a nice big nap.
It wasn't until a good friend pointed out a few things that I had not considered that climbed down off the ceiling. The presence of blast cells in the blood can be caused by strenuous exercise. Ann has been doing plenty of that at the PT gym as of late. On a scale of 1 to 10 she rates her 2 hour morning works, out at an 8. She has begun to sweat so much that the PT's are starting to offer her a towel when she starts on the nautilus.
Blast cells can also be caused when your immune system reacts to a bug. In line with this over the last three days Ann has had some GI issues that have already bee ruled out as being related to GvHD. So they are likely caused by a bug that she picked up. This would explain general rise in WBCs over the last couple of days and the current higher than normal level of Neutrophils in Ann's blood. Neutrophils are the grunts of the human immune system, so an increased level of them and the GI issues tends to support the presence of a bug.
Our next clinic visit is Friday so we will find out if this is the case. If it is then Ann will probably get put on antibiotics (Levaquin is the one of choice) for a week. That is, if Ann's new immune system doesn't handle the problem all by itself before then.
Finally our friend pointed out that the "r" word would be highly unlikely because we just had a positive BMB that showed 100% engraftment of both cords on day +30. Recurrent leukemia would have to take hold in her marrow before overflowing blasts out into the blood.
So my panic has subsided and my emotion meter is back to the "cautiously optimistic" setting it was at before. Also Ann did compromise with me about her reation some what. She curled up on the couch where I could watch her sleeping.
Ann's CBCs for today...
WBC 9.80 K/uL (4.0 - 11.0)
RBC 2.96 K/uL (4.0 - 5.0)
HGB 9.80 G/dL (12.0 - 16.0)
PLT 264.0 K/uL (140 - 440)
Lymphocyte Absolute Count 0.98 K/uL (1.0 - 4.80)
Neutrophil Absolute Count 8.23 K/uL (1.7 - 7.30)
Monocyte Absolute Count 0.39 K/uL (0.08 -0.70)
Neutrophil Percent 84.0% (42.0 - 66.0)
Lymphocyte Percent 10.0% (24.0 - 44.0)
Blast Percent 2.0% (0.0 - 0.0)
...
Panic: Defined as the primal urge to run in fear, or an overwhelming feeling of fear and anxiety. Also as sudden mass fear and anxiety over unanticipated events. Today I feel like the last definition is the most accurate in the context to today's CBC.
The results of Ann's CBC certainly fall into the category of "unanticipated events" mainly due to the presence of blast cells. Blast cells have been present in Ann's blood three separate times. First when we came to MDA, 193 days ago when there where so many of them in her blood that she was bordering on a stroke. Second after she was in remission and Neupogen was being used to regrow her marrow after chemo. Then finally today.
The problem with the blasts on today's CBC is that today is not 192 days ago and Ann has not been on Neupogen for almost a month. That left a couple of uncomfortable possibilities in my mind when the transplant APN handed us her results. The first was a clinical mistake...possible but not likely. Maybe those 2 cells out of a 100 counted where the baby stem cells reacting to something, or maybe it was a relapse.
It was the last possibility that sent me over the edge today. I should note that when I say "me" I mean me and not "me and Ann". Ann is quite the cool customer and very little fazes her. Fine I freely admit to being a worry wart. That is what Engineers are supposed to do, worry and obsess over the small details that foul up otherwise well laid out designs. So 2% blast cells looked like the end of the world to me around lunch time today. By contrast Ann wasn't bothered and actually took a nice big nap.
It wasn't until a good friend pointed out a few things that I had not considered that climbed down off the ceiling. The presence of blast cells in the blood can be caused by strenuous exercise. Ann has been doing plenty of that at the PT gym as of late. On a scale of 1 to 10 she rates her 2 hour morning works, out at an 8. She has begun to sweat so much that the PT's are starting to offer her a towel when she starts on the nautilus.
Blast cells can also be caused when your immune system reacts to a bug. In line with this over the last three days Ann has had some GI issues that have already bee ruled out as being related to GvHD. So they are likely caused by a bug that she picked up. This would explain general rise in WBCs over the last couple of days and the current higher than normal level of Neutrophils in Ann's blood. Neutrophils are the grunts of the human immune system, so an increased level of them and the GI issues tends to support the presence of a bug.
Our next clinic visit is Friday so we will find out if this is the case. If it is then Ann will probably get put on antibiotics (Levaquin is the one of choice) for a week. That is, if Ann's new immune system doesn't handle the problem all by itself before then.
Finally our friend pointed out that the "r" word would be highly unlikely because we just had a positive BMB that showed 100% engraftment of both cords on day +30. Recurrent leukemia would have to take hold in her marrow before overflowing blasts out into the blood.
So my panic has subsided and my emotion meter is back to the "cautiously optimistic" setting it was at before. Also Ann did compromise with me about her reation some what. She curled up on the couch where I could watch her sleeping.
Monday, July 23, 2007
Friday, July 20, 2007
49 Days Left
Day +51 (D 189)
Hello everyone today was Ann's clinic day so without further ado here are her counts for the day...
WBC 8.20 K/uL (4.0 - 11.0)
ANC 5.81 K/uL (1.7 - 7.3)
RBC 2.97 K/uL (4.0 - 5.0)
HGB 9.60 G/dL (12.0 - 16.0)
PLT 210.0 K/uL (140 - 440)
As you can see the WBC and ANC counts are a bit higher than on Tuesday. I had a bit of anxiety over the WBC count being a bit higher, but the transplant team assured me that there are often major variations in healthy people so not to worry. Ann's baby stem cells are still getting the bugs out of the red blood cell production line, as her HGB and RBC numbers are up over our last clinic visit. Again the transplant team said thats normal and the red blood cell portion of her blood work should begin to trend more positive. Finally Ann's baby stem cells have apparently decided that she needs platelets and lots of them. No complaints from Ann as the bruises from her Neupogen and Lupren injections have finally faded to almost nothing now.
Ann continues to do well at Physical Therapy. So much so that she has been pushing the therapists to increase the intensity of her work outs. They were skeptical at first but, after seeing Ann's commitment and energy they were convinced. Ann's PT workouts have now expanded to the point at which it consumes all the time we would have normally spent in the transfusion unit. For example the 1000ml bag of magnesium she gets infused over three hours now actually ends before her work out is over. The poor therapists have to stop her IV pump (which goes off like a car alarm when it's program is finished) and flush her line.
Ann keeps joking that she is starting to work on her "trophy wife" body. I can't complain but I honestly don't care. Having her alive and happy is more important to me because I love so very deeply.
In non MDA related news we have discovered an interesting fact about Houston. This time its the cable company...Comcast. When we moved to our new apartment we where really excited that it had basic cable already. Well that initial excitement was short lived after looking over what Comcast provides on it s basic menu. 6 Spanish language channels, 4 channels of Houston public access, the big three networks, PBS, A & E and the Food network.
The logic of Comcast's offerings escapes us. We both love the Food Network and can watch hours of Alton Brown without getting bored but, after your fifteenth Rachel Ray rerun your ready to scoop your eyes out with a spoon (Yum-o!). We miss BBC America desperately, if for no other reasons than Graham Norton, Eddie Izzard and Gordon Ramsay.
Here is to 49 Days left...Bon nuit tout le monde.
Hello everyone today was Ann's clinic day so without further ado here are her counts for the day...
WBC 8.20 K/uL (4.0 - 11.0)
ANC 5.81 K/uL (1.7 - 7.3)
RBC 2.97 K/uL (4.0 - 5.0)
HGB 9.60 G/dL (12.0 - 16.0)
PLT 210.0 K/uL (140 - 440)
As you can see the WBC and ANC counts are a bit higher than on Tuesday. I had a bit of anxiety over the WBC count being a bit higher, but the transplant team assured me that there are often major variations in healthy people so not to worry. Ann's baby stem cells are still getting the bugs out of the red blood cell production line, as her HGB and RBC numbers are up over our last clinic visit. Again the transplant team said thats normal and the red blood cell portion of her blood work should begin to trend more positive. Finally Ann's baby stem cells have apparently decided that she needs platelets and lots of them. No complaints from Ann as the bruises from her Neupogen and Lupren injections have finally faded to almost nothing now.
Ann continues to do well at Physical Therapy. So much so that she has been pushing the therapists to increase the intensity of her work outs. They were skeptical at first but, after seeing Ann's commitment and energy they were convinced. Ann's PT workouts have now expanded to the point at which it consumes all the time we would have normally spent in the transfusion unit. For example the 1000ml bag of magnesium she gets infused over three hours now actually ends before her work out is over. The poor therapists have to stop her IV pump (which goes off like a car alarm when it's program is finished) and flush her line.
Ann keeps joking that she is starting to work on her "trophy wife" body. I can't complain but I honestly don't care. Having her alive and happy is more important to me because I love so very deeply.
In non MDA related news we have discovered an interesting fact about Houston. This time its the cable company...Comcast. When we moved to our new apartment we where really excited that it had basic cable already. Well that initial excitement was short lived after looking over what Comcast provides on it s basic menu. 6 Spanish language channels, 4 channels of Houston public access, the big three networks, PBS, A & E and the Food network.
The logic of Comcast's offerings escapes us. We both love the Food Network and can watch hours of Alton Brown without getting bored but, after your fifteenth Rachel Ray rerun your ready to scoop your eyes out with a spoon (Yum-o!). We miss BBC America desperately, if for no other reasons than Graham Norton, Eddie Izzard and Gordon Ramsay.
Here is to 49 Days left...Bon nuit tout le monde.
Tuesday, July 17, 2007
My turn
Day +48 (Day 186)
Today was refreshingly short. My doctor saw me today, since he was going on vacation and wouldn't be in for Friday. He had nothing new to report and neither did I. No rashes, no nausea, no other fun and noisy bodily functions. My numbers continue to be good, but my red blood cell count did fall. We expected this and so did the advance practice nurse. Without further ado, here they are:
Red Blood Cells 2.86 (4.00-5.50)
Hemoglobin 9.3 (12.0-16.0)
White Blood Cells 7.4 (4.0-11.0)
Platelets 163 (140-440)
Absolute Neutrophil Count 5.55 (1.70-7.30)
I had a slight reaction to some IV medicine today. I get it every two weeks to help prevent pneumonia. It's never bothered me before, but today, it gave me an off and on stomach ache which made me late for physical therapy. I had to cram in two hours of exercise into forty-five minutes. Not fun. I must admit that I do feel better with all of the exercising. The only thing that I have to complain about is that I continue to retain fluid. The doctor thinks that I'm also putting on weight. He was a little embarrassed about introducing the topic. The weight just settles around my middle, which is frustrating. Clothes don't fit and I constantly feel uncomfortable. C'est la vie.
No more clinic visits until Friday. It'll be nice to get to sleep until 8. I can't believe I almost forgot. They reduced the amount of magnesium I'm getting intravenously. Slowly but surely, I'm being weaned off. I can't wait to be free of IV bags and the CVC. That's it for tonight. Sleep tight, everyone.
On a personal note: Dr. Cyndi, I got to see the pictures. The girls are so beautiful. I can't believe how fast they're growing up. Thanks for sending them. :)
Today was refreshingly short. My doctor saw me today, since he was going on vacation and wouldn't be in for Friday. He had nothing new to report and neither did I. No rashes, no nausea, no other fun and noisy bodily functions. My numbers continue to be good, but my red blood cell count did fall. We expected this and so did the advance practice nurse. Without further ado, here they are:
Red Blood Cells 2.86 (4.00-5.50)
Hemoglobin 9.3 (12.0-16.0)
White Blood Cells 7.4 (4.0-11.0)
Platelets 163 (140-440)
Absolute Neutrophil Count 5.55 (1.70-7.30)
I had a slight reaction to some IV medicine today. I get it every two weeks to help prevent pneumonia. It's never bothered me before, but today, it gave me an off and on stomach ache which made me late for physical therapy. I had to cram in two hours of exercise into forty-five minutes. Not fun. I must admit that I do feel better with all of the exercising. The only thing that I have to complain about is that I continue to retain fluid. The doctor thinks that I'm also putting on weight. He was a little embarrassed about introducing the topic. The weight just settles around my middle, which is frustrating. Clothes don't fit and I constantly feel uncomfortable. C'est la vie.
No more clinic visits until Friday. It'll be nice to get to sleep until 8. I can't believe I almost forgot. They reduced the amount of magnesium I'm getting intravenously. Slowly but surely, I'm being weaned off. I can't wait to be free of IV bags and the CVC. That's it for tonight. Sleep tight, everyone.
On a personal note: Dr. Cyndi, I got to see the pictures. The girls are so beautiful. I can't believe how fast they're growing up. Thanks for sending them. :)
Monday, July 16, 2007
Platelets Normal and Making Red Blood Cells
Day +47 (D 185)
Wow, did we get some encouraging news today...
WBC 7.20 K/uL (4.0 - 11.0)
ANC 5.45 K/uL (1.7 - 7.3)
RBC 2.94 K/uL (4.0 - 5.0)
HGB 9.40 G/dL (12.0 - 16.0)
PLT 149.0 K/uL (140 - 440)
...thats right Ann made Red Blood Cells for the first time today and her Platelets reached normal for the first time since the transplant! The change in the RBCs may not be much compared to last Friday, but it is a definite improvement. It seems that all of Ann's virtual juice boxes, crayons and cookies have encouraged the baby stem cells to do what they are supposed to be doing. In fact this is really the first time Ann has made her own RBCs since she was diagnosed over half a year ago.
There is some more good news from Physical Therapy as well. Because Ann is quite the model patient, the Physical Therapists have been adding exercises for her to do. What started out as a half hour workout has quadrupled. While Ann is on the nautilus, several of the patients came over today and told her how much they admired the effort she was putting out.
Ann has been roughing out a theory that maybe the growth of the baby stem cells is encouraged by exercise. Which would increases circulation, and carry more oxygen to the marrow and in turn encourage the production of more healthy cells. I don't think any studies have been done on the effect of exercise on BMT patients, but it certainly sounds good. Of course the down side to being a physical therapy over-achiever is the sore muscles the next day. Thats a small price to pay though.
We are not out of the woods yet, but now with all the good news we are starting to think about the future as a bit more than a abstract concept. We are beginning to dare to think about the trips we have promised to take to visit family and friends, both old and new. Ann wants to go back to Negril, Jamaica and visit the place we got married again. I'm not sure that the doctors here at MDA would sanction a trip to the Caribbean but we will see. However, right now we are planning trips to the East and West Coast.
In the meantime Ann is really looking forward to being given the all-clear from MDA to leave. After not being able to drive for 6 months she is excited about getting her independence back. She is planning on making the drive back to Baton Rouge herself.
Wow, did we get some encouraging news today...
WBC 7.20 K/uL (4.0 - 11.0)
ANC 5.45 K/uL (1.7 - 7.3)
RBC 2.94 K/uL (4.0 - 5.0)
HGB 9.40 G/dL (12.0 - 16.0)
PLT 149.0 K/uL (140 - 440)
...thats right Ann made Red Blood Cells for the first time today and her Platelets reached normal for the first time since the transplant! The change in the RBCs may not be much compared to last Friday, but it is a definite improvement. It seems that all of Ann's virtual juice boxes, crayons and cookies have encouraged the baby stem cells to do what they are supposed to be doing. In fact this is really the first time Ann has made her own RBCs since she was diagnosed over half a year ago.
There is some more good news from Physical Therapy as well. Because Ann is quite the model patient, the Physical Therapists have been adding exercises for her to do. What started out as a half hour workout has quadrupled. While Ann is on the nautilus, several of the patients came over today and told her how much they admired the effort she was putting out.
Ann has been roughing out a theory that maybe the growth of the baby stem cells is encouraged by exercise. Which would increases circulation, and carry more oxygen to the marrow and in turn encourage the production of more healthy cells. I don't think any studies have been done on the effect of exercise on BMT patients, but it certainly sounds good. Of course the down side to being a physical therapy over-achiever is the sore muscles the next day. Thats a small price to pay though.
We are not out of the woods yet, but now with all the good news we are starting to think about the future as a bit more than a abstract concept. We are beginning to dare to think about the trips we have promised to take to visit family and friends, both old and new. Ann wants to go back to Negril, Jamaica and visit the place we got married again. I'm not sure that the doctors here at MDA would sanction a trip to the Caribbean but we will see. However, right now we are planning trips to the East and West Coast.
In the meantime Ann is really looking forward to being given the all-clear from MDA to leave. After not being able to drive for 6 months she is excited about getting her independence back. She is planning on making the drive back to Baton Rouge herself.
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