On 3/14/2008
JuJusdaughter wrote:
Hello... I hoped that I could help...
Your post touched my heart, and today I pray for you and your mom. I have no other help -- only questions and if you do not mind, might you or others help me understand a little more about myelofibrosis?
I tried to find info at the Mayo Clinic site. I understand a little more, but what was not mentioned is
Hello... I hoped that I could help...
Your post touched my heart, and today I pray for you and your mom. I have no other help -- only questions and if you do not mind, might you or others help me understand a little more about myelofibrosis?
I tried to find info at the Mayo Clinic site. I understand a little more, but what was not mentioned is how long a person can have this and how slow or how fast it progresses. In the marrow, from one single morphed stem cell, scar tissue invades creating abnormal, sick, few and overpopulation of various cells... (in a nut shell?) How long does this process take before complications become extreme?
I imagine that initial onset and early symptoms might be fatigue, aches and pains.... can anyone tell me how long this early stage usually lasts? Does it vary?
Thank-you for your time. I love the love between my children and me. How sweet you love for your mother.
In LOVE sincere
AnotherMother
Private Reply Reply to This Message
Stages: this does vary from patient to patient really. My mother's early symptoms were lack of energy, unusual brusing (like someone had rubbed soot into her skin), noticable wieght loss in a very short time and leg pain. She may have been developing these problems for a while before she was diagnosed.
Her Cause: A chemotherapy medicine used to treat breast cancer in addition to radiation. This combo has been determined to cause this disease. But what are you gonna do? You take your chemo and radiation treatments and you kick cancers butt! That's what ya DO!
This doesn't mean this will happen to everyone! It's still a rare disease ok? Other possibilities: prologned exposure to benzene can cause this disorder too. Commercial detergents, bleach, gasoline, and you can even find it in the tobacco of our cigarettes. They put that poison on the leaves so the tobacco will not burn up to fast! I still haven't figured out how that is legal!
Your next quesitons:
How slow/how fast /how long: With my mothers situation she had bout six months before she required blood transfusions at that time she delt with leg pain, night sweats and bruising Now in her second year of mainating, she has one transfusion every 3 to 4 weeks, and recently had to add plateletts transfusion along with the red blood cell transfusion. She now keeps her leg pain under control with vicoprofen. The nose bleeds have not been as bad lately, since she will never take asprin again. Now, she also gets fever when her leg pain is bad. The nurse had to give her delauded during her last transfusion. She wasn't having a reaction or anything, thats just the disease flaring up when usualy no one is around when that happens. Her other symptoms that weren't there in the first six months were;loss of concentration,short term memory loss and confusion.
She is stable right now, but you can see that the disease has progressed over 2 years. I say stable because her liver and spleen show no signs of enlargement, and her symptoms are these that I mentioned and there are no more to add to the list right now.
So this is the hardest part for caregivers...you never know when the disease will begin to transmutate. I hope this helps you in some way!
I am amazed at her innerstrength, even though she has pain that constantly reminds her of the inevitable. :(
Private Reply Reply to This Message
Thank-you for your reply. I am still curious, though, about time... Is this cancer 2, 5, 10 year expectancy? Or is it totally unpredictable?
On another note, and more important, I want to tell you that you have touched my heart with your note... So with that, I write you again. I shall give you a little background so you know that my compassion and thoughts for you are not without some bases of understanding and empathy for both you and your mother.
I am currently being tested at SCCA for "something". Low grade fevers for over 3 years, great fatigue, pain "all over" (like I have the bad flu all the time). Night sweats come and go -- but when they come, I soak the whole side of our bed. Joint pain comes and goes and it can be quite difficult some days. There are some days within a week that I might feel a wee bit better, but overall, in the last three years, I have felt worse. My spleen is enlarged, and so too is my liver, though mildly so. My T cells are increased -- my immune system is compromised and so when I get sick with a cold, recently it develops into pneumonia (twice in the last 7 months.) I have increased lymphocytes... I pray I will have a definitive diagnosis soon. That said, I have had to learn to live with pain and fatigue for over 3 years, and so bad that I can't work and I need help with the house work even. Just loading the dishwasher creates sweaty, need to lie down, fatigue.
I have learned that who I am is not what I do. I used to be able to do so much. I used to be a sculptor, and then I went back to school when my youngest started school, and became a nurse. I was able to work full time for just over a year (and I LOVED it) before "mind over matter" did not cut it anymore. No matter what I do, I have not been able to "get better". I am by nature, more of a doer and caregiver than one who needs (or easily asks for) help. My body has transformed creating for my spirit roads to unfamiliar places of BEING.
I love caregivers. I love my children and husband. More and more I believe that such love is a gift, not only for the sick, but also (and maybe more so) for the caregivers. I see this more clear now that I am not able to "do" care giving.
Caregivers (you) are such a blessing! Your acts of love and concern for your mother are treasures from the Heart of all hearts. You are "being beauty" in the help and support you give. In reality such care creates a collaborative work of art, and a beautiful harmonic song, seen and heard in, what I call, "the in-between spaces" between you and your mother.
Every moment you spend with your mother, loving and caring, thinking and praying, you participate in eternity -- forever. Such acts are not only for the here and now. Such acts spin silver and gold cords to and from the Giver.
So, when you write, "I am amazed at her [your mother] innerstrength, even though she has pain that constantly reminds her of the inevitable."
I write: I am amazed at your inner strength; in and through your love and care for your mother, may you be reminded often that it is "inevitable" that you are participating in the Eternal Gift of everlasting love.
God is Love...
Another Mother
Thank-you for your reply. I am still curious, though, about time... Is this cancer 2, 5, 10 year expectancy? Or is it totally unpredictable?
On another note, and more important, I want to tell you that you have touched my heart with your note... So with that, I write you again. I shall give you a little background so you know that my compassion and thoughts for you are not without some bases of understanding and empathy for both you and your mother.
I am currently being tested at SCCA for "something". Low grade fevers for over 3 years, great fatigue, pain "all over" (like I have the bad flu all the time). Night sweats come and go -- but when they come, I soak the whole side of our bed. Joint pain comes and goes and it can be quite difficult some days. There are some days within a week that I might feel a wee bit better, but overall, in the last three years, I have felt worse. My spleen is enlarged, and so too is my liver, though mildly so. My T cells are increased -- my immune system is compromised and so when I get sick with a cold, recently it develops into pneumonia (twice in the last 7 months.) I have increased lymphocytes... I pray I will have a definitive diagnosis soon. That said, I have had to learn to live with pain and fatigue for over 3 years, and so bad that I can't work and I need help with the house work even. Just loading the dishwasher creates sweaty, need to lie down, fatigue.
I have learned that who I am is not what I do. I used to be able to do so much. I used to be a sculptor, and then I went back to school when my youngest started school, and became a nurse. I was able to work full time for just over a year (and I LOVED it) before "mind over matter" did not cut it anymore. No matter what I do, I have not been able to "get better". I am by nature, more of a doer and caregiver than one who needs (or easily asks for) help. My body has transformed creating for my spirit roads to unfamiliar places of BEING.
I love caregivers. I love my children and husband. More and more I believe that such love is a gift, not only for the sick, but also (and maybe more so) for the caregivers. I see this more clear now that I am not able to "do" care giving.
Caregivers (you) are such a blessing! Your acts of love and concern for your mother are treasures from the Heart of all hearts. You are "being beauty" in the help and support you give. In reality such care creates a collaborative work of art, and a beautiful harmonic song, seen and heard in, what I call, "the in-between spaces" between you and your mother.
Every moment you spend with your mother, loving and caring, thinking and praying, you participate in eternity -- forever. Such acts are not only for the here and now. Such acts spin silver and gold cords to and from the Giver.
So, when you write, "I am amazed at her [your mother] innerstrength, even though she has pain that constantly reminds her of the inevitable."
I write: I am amazed at your inner strength; in and through your love and care for your mother, may you be reminded often that it is "inevitable" that you are participating in the Eternal Gift of everlasting love.
God is Love...
Another Mother
Thank-you for your reply. I am still curious, though, about time... Is this cancer 2, 5, 10 year expectancy? Or is it totally unpredictable?
On another note, and more important, I want to tell you that you have touched my heart with your note... So with that, I write you again. I shall give you a little background so you know that my compassion and thoughts for you are not without some bases of understanding and empathy for both you and your mother.
I am currently being tested at SCCA for "something". Low grade fevers for over 3 years, great fatigue, pain "all over" (like I have the bad flu all the time). Night sweats come and go -- but when they come, I soak the whole side of our bed. Joint pain comes and goes and it can be quite difficult some days. There are some days within a week that I might feel a wee bit better, but overall, in the last three years, I have felt worse. My spleen is enlarged, and so too is my liver, though mildly so. My T cells are increased -- my immune system is compromised and so when I get sick with a cold, recently it develops into pneumonia (twice in the last 7 months.) I have increased lymphocytes... I pray I will have a definitive diagnosis soon. That said, I have had to learn to live with pain and fatigue for over 3 years, and so bad that I can't work and I need help with the house work even. Just loading the dishwasher creates sweaty, need to lie down, fatigue.
I have learned that who I am is not what I do. I used to be able to do so much. I used to be a sculptor, and then I went back to school when my youngest started school, and became a nurse. I was able to work full time for just over a year (and I LOVED it) before "mind over matter" did not cut it anymore. No matter what I do, I have not been able to "get better". I am by nature, more of a doer and caregiver than one who needs (or easily asks for) help. My body has transformed creating for my spirit roads to unfamiliar places of BEING.
I love caregivers. I love my children and husband. More and more I believe that such love is a gift, not only for the sick, but also (and maybe more so) for the caregivers. I see this more clear now that I am not able to "do" care giving.
Caregivers (you) are such a blessing! Your acts of love and concern for your mother are treasures from the Heart of all hearts. You are "being beauty" in the help and support you give. In reality such care creates a collaborative work of art, and a beautiful harmonic song, seen and heard in, what I call, "the in-between spaces" between you and your mother.
Every moment you spend with your mother, loving and caring, thinking and praying, you participate in eternity -- forever. Such acts are not only for the here and now. Such acts spin silver and gold cords to and from the Giver.
So, when you write, "I am amazed at her [your mother] innerstrength, even though she has pain that constantly reminds her of the inevitable."
I write: I am amazed at your inner strength; in and through your love and care for your mother, may you be reminded often that it is "inevitable" that you are participating in the Eternal Gift of everlasting love.
God is Love...
Another Mother