Hello Everyone:
At Pat's request we want to explain why this blog has been updated less often than we originally intended when we began it back last July. For one thing, much of what has been happening with Marcia, especially in the last few months, has been sort of "holding pattern" stuff... dealing with side effects, trying one "cure" and then another, circumstances little changed, no new information, etc., etc. When we've had some solid news, we've been sure to report it, but sometimes it has just been more of the same with nothing really different.
But the other reason is that the writer from the beginning in July of '09, whom some of you may know, Kathie Keil Crozier, was herself diagnosed with breast cancer on October 1 '09. This was completely unexpected - no signs or symptoms at all - and came from a routine mammogram. In October and November she had three surgeries to finally get good margins on the tumor and remove lymph nodes. The cancer was determined to be stage II, with a 2.1 centimeter tumor and involvement in only the sentinel lymph node. Unfortunately they had to take 14 nodes in all for the pathology to be certain. There is no reason right now to believe that the cancer has gone elsewhere however she coming up on her third round of 6 chemo therapies. She is in two clinical trials that will support this process and follow her for the next 10 years. Daily radiation therapy for 33 days (Mondays through Fridays - apparently cancer does not work on weekends) will follow the chemo and then medication - likely a pill - for several years after that should finish up the process. Unfortunately the process has made it difficult if not impossible to do much coherent writing on some of the 21 days between chemos, so it's been necessary to seize the moments to write when she can.
We just wanted you to know about this too... life sure is interesting isn't it? On September 22nd Kathie was down at Fred Hutch with Pat and Tina for the training to be one of Marcia's helpers and on October 1st - the first day of Breast Cancer awareness month, she was in the process herself. The good news is that Marcia has another totally bald buddy... solidarity!
Thanks
Pat and Tina and Shawna
[and.... writer's note... thanks,
Kathie Keil Crozier]
Monday, February 15, 2010
Marcia's News for February 15th
Hello Everyone:
Marcia's good news is that according to all the most recent diagnostic testing the bone marrow transplant has worked and her bone marrow is doing all the normal things it is supposed to do. This is of course wonderful news. Unfortunately, side effects from the process continue to create all kinds of huge challenges and are now where her biggest fight is taking place. The most dangerous and persistent of these... the one now causing the majority of the problems, is the Graft-Versus-Host Disease(GVHD). It has proved to be stubborn and persistent and resistant to some degree or another of most of the remedies that have been tried. It is better than it was, but it continues to be her biggest challenge now.
Last week another port was surgically placed on her left chest and an entirely new treatment was begun. The port proved very difficult to get into place and her left side has three incisions from three attempts and is painful and sore and black and blue, as she says, with no blue, just black. This had to be done to accommodate this newest treatment. It is called THERAKOS™ Photopheresis and is a process slightly similar to dialysis. What it does is remove a small amount of the patient's blood into a machine which then separates it into it's various components, adds medications to the white blood cells, activates the medication by UVA light and then finally, returns the treated white blood cells to the patient's body. The intention and expectation is that this process significantly boosts the effectiveness of the medications and in some way boosts the immune system's response to the medications and the overall healing process. This information is taken from and more information can be found at www.therakos.com.
Tina and Pat are taking a lot of control of her nutrition. They are being very careful and diligent to see which foods agree with her and which do not and are shaping what she eats accordingly. They are also giving her protein shakes, all of which, until the surgery to install the port, had started to work very well and should continue to do so going forward. In addition to this, some of the medications that were previously used are being reduced or eliminated, so that many of the medication side effects are being reduced.
She remains very, very weak and right now is not capable of independent movement... moving in bed, shifting positions, and she is unable to stand or walk at all. Needless to say this is very discouraging. She really really dislikes (read hates :) the therapies because they are so uncomfortable and require so much exertion, but she does them. Recently they have brought in a machine... a contraption... that assists with standing because she just cannot stand unassisted, even with support of two people. This machine supports in all the right places and allowed her to stand upright without the fear of falling and that in turns allows circulation, stretching and strengthening of those areas that have become too weak to support her.
Most importantly Marcia continues to hang in there and fight hard to get over all of this and get back home. She has never, in any way, given up, nor is there any reason to think that she ever will. She has proved to be a tremendous fighter and the rest of us continue to be amazed at her strength and determination to beat this thing. We have every expectation that she can and that she will.
As always, please keep Marcia, and all of us in your thoughts and prayers. Thanks so much for the support you have already given us. We appreciate everything so much.
Marcia's Family
Marcia's good news is that according to all the most recent diagnostic testing the bone marrow transplant has worked and her bone marrow is doing all the normal things it is supposed to do. This is of course wonderful news. Unfortunately, side effects from the process continue to create all kinds of huge challenges and are now where her biggest fight is taking place. The most dangerous and persistent of these... the one now causing the majority of the problems, is the Graft-Versus-Host Disease(GVHD). It has proved to be stubborn and persistent and resistant to some degree or another of most of the remedies that have been tried. It is better than it was, but it continues to be her biggest challenge now.
Last week another port was surgically placed on her left chest and an entirely new treatment was begun. The port proved very difficult to get into place and her left side has three incisions from three attempts and is painful and sore and black and blue, as she says, with no blue, just black. This had to be done to accommodate this newest treatment. It is called THERAKOS™ Photopheresis and is a process slightly similar to dialysis. What it does is remove a small amount of the patient's blood into a machine which then separates it into it's various components, adds medications to the white blood cells, activates the medication by UVA light and then finally, returns the treated white blood cells to the patient's body. The intention and expectation is that this process significantly boosts the effectiveness of the medications and in some way boosts the immune system's response to the medications and the overall healing process. This information is taken from and more information can be found at www.therakos.com.
Tina and Pat are taking a lot of control of her nutrition. They are being very careful and diligent to see which foods agree with her and which do not and are shaping what she eats accordingly. They are also giving her protein shakes, all of which, until the surgery to install the port, had started to work very well and should continue to do so going forward. In addition to this, some of the medications that were previously used are being reduced or eliminated, so that many of the medication side effects are being reduced.
She remains very, very weak and right now is not capable of independent movement... moving in bed, shifting positions, and she is unable to stand or walk at all. Needless to say this is very discouraging. She really really dislikes (read hates :) the therapies because they are so uncomfortable and require so much exertion, but she does them. Recently they have brought in a machine... a contraption... that assists with standing because she just cannot stand unassisted, even with support of two people. This machine supports in all the right places and allowed her to stand upright without the fear of falling and that in turns allows circulation, stretching and strengthening of those areas that have become too weak to support her.
Most importantly Marcia continues to hang in there and fight hard to get over all of this and get back home. She has never, in any way, given up, nor is there any reason to think that she ever will. She has proved to be a tremendous fighter and the rest of us continue to be amazed at her strength and determination to beat this thing. We have every expectation that she can and that she will.
As always, please keep Marcia, and all of us in your thoughts and prayers. Thanks so much for the support you have already given us. We appreciate everything so much.
Marcia's Family
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