Did you ever have any of those-”I really have no clue but am afraid to ask” situations? I don’t know about you, reader, but what I knew about “chemo” before my son was diagnosed was very limited. What I did know was that when a person had cancer, then they had to have chemotherapy in order to get better. Was chemotherapy a drug, a few drugs, radiation…what? I was totally clueless!. And honestly, even though I knew some people who had cancer, I was not close enough to them to learn exactly what chemotherapy was all about.
And then our son was diagnosed with leukemia. I now know more about chemo then I ever wanted to. Maybe ignorance was bliss, no?
When Nicky was receiving treatment, I had others who surrounded me who knew as much about chemo as I once did. They were also unsure about what this secret remedy “behind the curtain” was as well. Some were brave enough to ask what medicine Nicky was taking, some would try to read up on it to be supportive, while others were apprehensive about asking any questions at all.
Sympathy is when a person has compassion for another person’s sadness or pain. On the other hand, empathy allows a person to have a deeper understanding of that pain or sadness either because of a personal experience or of their own innate ability to imagine and connect. I can see how being able to understand what chemo is allows a person to be empathetic towards others who have cancer. This “empathy” allows friends and family to offer incredible support to the one going through chemo or to those who are taking care of a child or family member who is not well.
In her book, Childhood Leukemia, Nancy Keene writes that “The word chemotherapy is derived from the combination “chemical and therapy or treatment. It means using drugs, singly or in combination, to destroy or disrupt the growth of cancer cells without permanently damaging normal cells.” p.171
If any of you are supporting a friend who has a child or loved one who is going through chemo, then be encouraged to simply go ahead and ask about their treatment. That person acting as the primary caregiver can feel very isolated in a few ways. One is in a physical manner because of the time distanced from others while taking care of the child. And the other is by having an emotional disconnect because of how others cannot possibly understand all that the child and the family are enduring. True friends will gently ask, be open and genuinely interested when explanations are given.
Sometimes when people asked me about chemo, I would simply explain it the way I understood it best. To me, chemotherapy is like an umbrella. Under it are all of the treatment medicines that are right for a particular type of cancer. Once it was determined exactly which type of leukemia (cancer of the blood) that Nicky had, then the doctors knew the exact protocol that he would receive.
Nicky’s protocol was AALL0232. You can see in the umbrella graphic above all of the various medicines that fall under it. Some drugs were given every day or on certain days each month. Other drugs were given at different stages in this three and a half year plan. How the drugs were administered varied: orally, intravenously, intrathecally (spinal tap), subcutaneously (injections that went just under the skin), or intramuscularly (injections that went into large muscles). Many times the drugs were administered in more than just one way to reach different targeted areas.
The hospital where Nicky was treated was the right place for him to be. We felt good about the treatment plan, the doctors, nurses and staff as well as the facility. If for some reason we moved or had wanted to go elsewhere, Nicky would have received the same exact treatment. This specific protocol is what hospitals around the country use to successfully treat this type of leukemia (T-Cell ALL).
Hmm…looking over the medicines, it looks light–meds are missing. The missing medicines are those he took because of the chemo. The antinausea drug (Zofran), antibiotics, Fentanyl and Versed (for pain and to reduce memory during spinal tap), Morphine, Oxycodone, Colace, Glycolax and many other side effect drugs that helped his body to deal with the weakened state that it was in.
For those of you who are standing by and supporting someone with cancer, does this help your understanding a bit of what a friend or a friend’s child may be going through? How about you, reader? Are you one who may be experiencing or perhaps have already experienced something similar to this? How do you explain being “in treatment” to others?
And lastly, how does it help to have others understand what is happening?
Please share your comments.