Reluctant grazing best describes my diet. Water tastes terrible. I wear a hydration backpack carrying 1500 ml of saline solution. A battery operated pump feeds me 250 ml for each of six hours. This replenishes my body fluids. You would think I could drink eight ounces of water every hour, but well, forget it. To do so, would be equivalent to torture.
My palate rebels against the chemo yet surprising concoctions work. Since large portions have no appeal, I rely on nutritional supplements previously foreign to my diet. Two days ago, I enjoyed a fruit cup in the morning, four sections of Ak Mak crackers with organic peanut butter, Chocolate Instant Breakfast in the afternoon, and two scrambled eggs alone for dinner. That was the most I’d eaten since last Friday.
Yesterday morning I had energy (thanks to my Instant Breakfast) and a craving for a sesame seed bagel with cream cheese. We walked to a coffee/pasteria. We sat outside in the morning sun and I ate half of my bagel. Now, this evening I’ve downed two frozen chicken enchiladas, ala Trader Joe’s. We’ll see if indulging my craving was prudent.
Everyday, I give blood and we clinic with the team nurse and PA. My platelets were so low; a transfusion was necessary. So, we returned to the apartment while the order went out for the platelets. I ate the other half of my bagel and shuttled back for the transfusion. The platelets are the color of applesauce. The infusion lasted one hour and my body accepted them with no reaction.
Those who’ve come this far understand I’m more into reporting than sympathy. This is the front line; I’m one sneeze away from the hospital. Each day I’m hanging on—barely. My WBC count is zero. No doubt, like my friend at the clinic, G, I am crawling with bugs. My comfort level is decent: only recently
have I felt physical pain, but I stare into space a lot, like someone on narcotics. For a portion of each day, nothing matters. Chemo makes you lose the inclination to care. I hate that more than anything. Maybe that’s why I went for the enchiladas.
Nausea is terrible. I’ve had three bouts. Once with the investigational drug, Amifostine, then the Melphalan raised its ugly head and I lost my dinner soup before bedtime. One morning, I could not even finish a glass of juice before vomiting four times. The persistent low-grade unease in my gut leads to what I call the chemo shuffle. It’s sort of a defense mechanism against upsetting the tender balance in my stomach.
Fighting cancer is a dance macabre. The patient not only battles the malignancy but struggles against the medicine intended to provide relief. Chemo is poison. It accomplishes miracles by targeting molecular weaknesses in cancer cells. However, it often damages healthy tissue and creates vulnerabilities that may lead to other cancers, sometimes years down the line. These are the compromises we make to live now. We try to balance the immediate risks against the long-term possibilities and, in the process, put ourselves through the discomfort of the chemo’s short-term effects. At this point we’ve done all that can be done. Perhaps a few months from now we’ll have a celebration. It’s just too bad I must run so many red lights to get there.
Melphalan, Captain Chemo, is the perfect anti-hero.
HOPE
Hope is the thing with feathers
That perches in the soul,
And sings the tune without the words,
And never stops at all,
And sweetest in the gale is heard,
And sore must be the storm
That could abash the little bird
That kept so many warm.
I’ve heard it in the chilliest land
And on the strangest sea;
Yet, never, in extremity,
It asked a crumb of me.
Emily Dickinson
Good Blood, Bad Blood 