I know many of you have been anxiously waiting an up to date report regarding Sabine's condition. Last week we had the kidney biopsy and are now getting those results back along with the results of some intensive blood and urine work.
Sabine does not have a kidney (renal) disease. Instead, her kidneys have been "plugged up" with some blood cells causing 90% of her kidney function to fail.
So, the kidney team is now in the background and the blood team in the forefront. We have met twice with a member of the blood (hematologists) team and they have yet to make a diagnosis. But from were I am -- listening -- researching on the internet -- and putting things together, I expect they will be telling us sometime this week (and maybe after a bone marrow biopsy) that Sabine has multiple myeloma -- a cancer of the blood. At least that is what I am prepared for and if something changes -- like telling us it's all a big joke -- that's what we both think it is.
There are things that can be done to reduce the impact and try and control the disease, but there currently is no cure for it.
When we get out of here, there will be frequent checks on her blood and kidneys and an effort to get this disease into remission.
Sabine will have a suppressed immune system and will be very susceptible to colds, infections, etc. So please don't be around her if you have anything that is catching.
At the same time, she will probably experience some bone pain as there already is some lesions and bone loss already spotted in yesterday's x-rays. This could eventually make her very susceptible to bone breakages.
Then there is the on-going problem of her lack of kidney function: she must be sure to keep those kidneys hydrated and must chemically control her high blood pressure that the kidney failure has caused. Her current kidney failure is believe to be permanent.
Presently, we have the high blood pressure and anemia that is causing a loss of energy on her part; hence my intense gate-keeping for your phone calls and visits.
As I have told some of you already, if you can't talk to her without crying, don't. Wait until you get yourself together so that you can be of help by being supportive and upbeat with her.
Well, that's the report from the trenches. We have both had our crying jags and no doubt many of you will too as you read this. We are grieving the loss of what we had -- but, at the same time, we can welcome a new and exciting future together.
But remember, we are both fighters, trust in God, and we will get through this with your prayers and with God's help.
Now is the time for positive thinking and a chance for her to experience again the healing power of love and prayer.
I am signing out for now. There is more info on MM (multiple myeloma) below. You may want to check it out to see what lies ahead.
In the meantime, we may be discharged today and the future work and treatment will be done out-patient.
We both send our love to you and thank you for you concern, prayer, offers of help and support and -- above all -- your love,
Here is some information from a very good website on myeloma at: http://northtexas.myeloma.org
Also see http://myeloma.org which is the site of the International Myeloma Foundation.
Multiple myeloma is a blood cancer. Other better-known blood cancers are leukemia and lymphoma. It is called “multiple” because this cancer typically causes problems in more than one place in the body.
The occurrence of myeloma is on the rise in the United States. It currently has no known cure, but it is usually slow-growing and can be treated. Myeloma has long been known as a disease of the elderly, but in recent years more and more younger people are being diagnosed with this cancer.
The cause of myeloma is not known, but it is thought that certain industrial products, farm fertilizers and pesticides, and radiation might all be contributing factors.
There is no known hereditary factor associated with myeloma, although the occurrence of myeloma within families is being studied.
Multiple myeloma is slightly more likely in men than in women, and it is more common in African-Americans than in Caucasians.
Common problems seen at and prior to diagnosis are tiredness, weakness, infections, bone pain, and fractures.
Multiple myeloma is called a hematological cancer and affects the plasma cell, one of the blood cells that comprise the immune system. The plasma cell is an immunoglobulin-secreting cell. In other words, it is a “factory” that the immune system creates in order to generate massive amounts of antibodies, or immunoglobulins, in order to fight “invaders.” Immunoglobulin is a protein that, when produced by a malignant plasma cell, is called myeloma protein or m-protein.
Normal bone marrow contains less than 5% plasma cells. In multiple myeloma there are usually more than 30% plasma cells and that number can increase to over 90%.
There are over 15, 000 new cases of myeloma in the U.S. each year, representing 15% of all blood cancers and 1% of all types of cancer.
According to the International Myeloma Foundation (IMF), “There is only a weak family tendency to develop myeloma. Approximately 3-5% of patients with myeloma give a history of myeloma or a related blood/bone marrow condition within the extended family. Thus far, no specific gene has been linked to this myeloma tendency.”
There are three typical ways that myeloma affects a person. First, myeloma suppresses the immune system, which leaves the person more likely to get sinus, respiratory, and other infections. A suppressed immune system may mean anemia (weakness, tiredness) and low platelets (slowness to heal).
Second, myeloma affects the skeleton. Lesions may lead to compression fractures in the spine, broken ribs, arms, shoulders, or legs. Bone pain is often a side effect of the disease.
Third, the myeloma protein may affect the kidneys to a significant degree. It is not uncommon for patients to have kidney damage and even kidney failure at diagnosis.