“Grief is being here when in your heart, mind and soul you’d rather be there.” Paul Alexander
One is only able to navigate the grief journey by acknowleding and honoring what is true to your story of loss. Sometimes the oceans of grief flow gently and other times they are rough and harsh. The ebb and flow will surely be there as the natural order of the grief progresses, waxes and wanes. Don’t rush the ocean and as best you can ride with the waves and curl in a ball when they threathen to overpower you. You can choose how you will face the tide. Befriend your grief by giving yourself permission, time, space and supports to adjust to this new world. There is not a right or wrong way to grieve. But there are ways to honor your individual pulse and rhythm.
Elisabeth Kubler Ross, a pioneer in the field of death and dying, spoke of the stages of dying which also transferred early on to the literature of bereavement. Denial, anger, bargaining, depression and acceptance became useful map points for the dying and grief process.The down side of looking at phases and stages is that one may judge oneself for not moving to the finish line. Grief is more like a hodge podge of moments than a race through to the finish line. We hear the questions in our hearts and in our minds as we engage in the difficult questions of "How do I get through today? What will trigger off my emotions? How do I sleep alone? How do I drive by the hospital where she died or go to church where the funeral was held? How can I possibly go shopping?"
We may look the same but the inner workings and rewiring of our heart strings and temperament need time and processing. I think we need more clothing or hats to wear when we are in facing the fires of grief....or perhaps wear a grief cast or sign that says: "Please Handle with Care!" My heart is hurting and my mind is working overtime to make sense of it all. Will someone listen long enough and not think I’m crazy or smile at me or pat my hand with a sympathic puppy dog look? I want you to know I’m in different terrain now.
Sunday, May 31, 2009
Sunday, May 17, 2009
He has been "gone" for seemingly forever now, having spent nearly 6 weeks in the hospital, highly isolated from the majority of human contact, fighting to conquer this monster called AML, Acute Mylenogeous Leukemia.
Thursday, May 14, 2009
THE LAST FEW WEEKS ....HAVE BEEN SPENT WITH MY [WANDA] MOM.
AS WE HER CHILDREN GATHERED AROUND HER BED ...SINGING "GOD BE WITH YOU UNTIL WE MEET AGAIN" SHE QUIETLY SLIPPED INTO HER HEAVENLY HOME.
IN THE LAST FEW WEEKS OF HER LIFE , MOM PICKED UP HER STILLED PAINT BRUSHES AND AS ONLY A ARTIST WOULD DO ....SHE PAINTED HER LIFE STORY
HER MIND, WHICH HAD BECOME DIM IN HER DECLINING YEARS, SURGED WITH VIBRANT COLORS ...NOT SEEN FOR SOME TIME ...AS SHE CHOSE A UNIQUE COLOR FOR EACH OF HER CHILDREN AND GRANDCHILDREN ... SHE WAS ABLE TO EXPRESS HER LOVE FOR US.
AS WE RESPONDED...WITH OUR COLOR OF GRADITUDE AND LOVE...THEIR WAS A BLENDING OF SUCH BEAUTY...
WITH RENEWED HASTE ...THE BRUSH STROKES WERE LARGER..AND THE COLORS MORE VIBRANT AS SHE EXPRESSED HER LOVE FOR HER LORD ....
AS SHE OBSERVED HER WORK...THERE STILL SEEM TO BE A COLOR THAT SHE WAS SERACHING FOR ...AND AS SHE QUIETLY ...PUT DOWN HER BRUSHES..[AS IT MUST BE WITH ALL OF US]....HER LORD PICKED UP THE BRUSH ...TOOK THE COLOR OF GRACE ....POURED IT OVER HER PAINTING ...
THE FINISHED WORK .....A MASTERPIECE...ORDAINED BY HER MASTER ...
WILLIMINA GRASHUIS ..APRIL 3 1919....MAY 9 2009
AGAIN ...WE NEED PRAYERS ...AS WE SAY ANOTHER GOOD BYE...
Monday, May 11, 2009
Earlier this year I was facing serious medical concerns. All initial tests and symptoms pointed to AML (Acute Myelogenous Leukemia) and when I started the research my heart and stomach hit the floor before my knees could to pray. However, after a month of in and out testing and several doctors later- it was discovered that I have SLE (Systemic Lupus Erythematosus, just "Lupus" for short). I will admit that it hasn't been easy, and there are times I find myself struggling more with the anger and hurt of being sick more than the actual symptoms themselves. However- I have never been more humble than I am today.
At the same time that I was facing my diagnosis a friend of mine's father was getting sick. He was eventually tested, and diagnosed with AML, and has struggled through treatment and to keep one step ahead of this disease for the better part of the last year. Recently his Dr. told him that he had lost the battle and that there was nothing else they could do for him.
His doctor obviously didn't know my friend Sara (the patients daughter) or the strength, love, energy, and power that this woman carries with her in her heart.
Maybe there is nothing else THAT Dr. could do for PapaAmore, but there is so much WE can do for him. Pray. Research. Make calls. Ask questions. Help find resources, studies, treatments. Everyone knows someone who holds the solution to another person's problems, it's all about network. And it's all about getting the word out. To each other, to God.
Do not give up. Believe. Fight. Love.
I invite you, no, I beg you to visit Sara's blog, the journey of her father's fight for his life, her fight for his life. So many miracles are already happening, so quickly.. already he has a new Dr., a new medicine, an invitation to the University of Chicago Lukemia center, someone who has offered to fly him.
The wheels are turning, God is listening. Be a part of something great. Even if all you can do is read, and pass the link on to someone else. If you can't help- you know someone who can, you just may not realize it.
There but for the grace of God go I..
Thursday, May 7, 2009
Saturday, May 2, 2009
How is MDS Treated?
Treatment for MDS depends on two main factors: the degree to which blood cell counts are reduced, and the risk of progression to AML.
In the high-risk group and the intermediate-risk group II, there is a high rate of progression to AML. These patients should consider receiving intravenous chemotherapy. Relatively strong doses of chemotherapy are given to "induce" control of the disease. One temporary side effect of inductive chemotherapy is further failure of the bone marrow. Initially, chemotherapy kills the bone marrow cells that normally produce platelet and red and white blood cells. This phase lasts several weeks, during which the patient remains hospitalized, receiving red cell and platelet transfusions along with antibiotics to fight infection. Because chemotherapy kills dividing cells elsewhere in the body, not just in the bone marrow, patients experience hair loss, mouth sores, and often diarrhea.
If induction chemotherapy manages to control the myelodysplastic cells, then relatively normal cells should grow. Within several weeks there will be enough red cells and platelet produced in the marrow to require fewer transfusions. Meanwhile, the white cell count should also rise, lessening the risk of infection.
Unfortunately, the chance of controlling MDS with induction chemotherapy is only about 30%. Even in successful cases, the disease often returns within twelve months. Thus aggressive chemotherapy is given to a minority of MDS patients.
Red Cell Transfusion
Alternatives to Red Cell Transfusion
The ideal treatment for anemia is to prevent or improve it so that blood transfusions are unnecessary. The following treatments offer limited success.
Bone Marrow Transplantation