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Even the bone marrow aspirations at the clinic were a learning experience. I wonder why
all the technicians don't know that two fenatyl "lollypops" will generally cause nausea for
the patient? Administering the same drug intravenously seldom causes the same effect.
That is a frustrating lesson to learn, especially knowing how much Aldeane hated to have
emetic episodes (that is much too nice of a term to use for throwing up).
During this phase, Aldeane also had a psychological struggle with the illness that had
been presented to her. All her life she had prepared herself for breast cancer, especially
since her mother and grandmother had encountered that disease. Since it was such a
shock to get a different serious illness, she was able to play a mind game by denying to
herself that MDS was "cancer". As Caregiver, I did not feel it was my job to throw this in her
face. I even found corroboration on the internet that MDS is not cancer. It was not
necessary to determine if this was absolutely true, I let her try and cope in whatever way
she felt that she could be in control. It was not until we were at the transplant clinic that a
doctor confronted her with the question of why she was at a cancer center if she did not
have cancer. To this day, I am not sure whether or not MDS (especially in its early stages)
is cancer or not. Uncontrolled it can turn into Leukemia, but our bodies are continually
controlling trace amounts of "cancerous" cells so when does it become "cancer" as a
diagnosed disease? Fortunately, by the time this incident with the doctor happened,
Aldeane was able to cope with the use of that word.
Searching for a donor
Finding that Aldeane's lone sibling provided a "perfect" HLA match saved us the agony that
you may have to encounter. We were blessed with an immediate solution so we did not
have to sit around and wait through the endless rejections. You will have to find another
source to help you through that leg of the journey.
Lessons learned by the Caregiver while the patient is undergoing the chemotherapy that
kills off all of her bone marrow and then receives the life-giving stem cells from her donor:
that tears help wash away the tension as you watch helplessly while your beloved
is in pain and agony,
how frustration sets in as doctors or nurses do not accept your observations of
how to best help the patient,
how elated one can be when blood test results show the engraftment of the stem
cell transplant, or even the delight of seeing subsequent small improvements in