Difficulty Swallowing: A Medical Chronicle by Matthew Geller

BOMB 2 Winter 1982
002 Fall 1982
Matthew Geller

The first foreign country I visited was Mexico. I knew enough Spanish to read a menu. But when I went to a restaurant and the waiter asked me what I wanted I realized I didn’t know how to order.

March 12, 1979

Elley, her parents, Dr. Weissburg, who was in charge of the case, Lauren Dillon (the head of Elley’s nursing team) and I all met in the Nurses’ Lounge to clear up some sources of confusion. What will chemotherapy treatment involve? What is the prognosis? We were all anxious to make the “right” decisions. Everyone in the room guarded an isolated territory of his own.

Elley and I had been assuming that she could expect to live 2–3 years; Dr. Weissburg immediately dispelled that notion by informing us that the average first remission is 8–10 months. He said that the treatment would consist of a seven day course of chemotherapy. The type and dose of chemicals used for treatment will be based on the type of leukemia and Elley’s age and physical condition. He admitted that there were no absolute rules—the exact recipe is always an educated guess. Fifty percent of the patients who have a remission need two courses of chemo. So, if the first course fails, this doesn’t rule out the possibility of a remission.

“Will the chemo make me sterile?” Elley asked.

“Yes, but most people who have leukemia don’t expect to have children,” Dr. Weissburg replied. I knew that Elley was concerned about losing an essential function of her body, not about having children.

“What if there is no remission after the second course?”

“We’ll worry about that only if it happens…one step at a time.”

March 14, 1979

10:00 PM


S: Pt. interviewed alone and c friend, Matt. Expressed concern over sterility, need to talk to others about what experience will be. Expressed desire to speak c others who may have had chemotherapy. c/o (complaining of) pain & feeling she was not always responded to when asked for pain med (medicine)—“Don’t they believe me?”—and that plans not always explained to her. c/o feeling lonely & frightened.

O: Very attractive woman who looks very frightened but is anxious to talk about her concerns. Matt is always verbal and is willing to help out in practical matters—getting her mouthwash, etc.

A: Appropriately frightened young woman who is trying to approach her illness in an intellectual manner. Needs information as well as understanding to make her feel somewhat in control.

P: 1. Evaluate what she knows about illness. Slowly give accurate answers and explanations for day to day problems.

2. Need to investigate possibility of introducing Ellen to others who have had similar experience.

3. When c/o pain: along with medicating, stay c pt and reassure her.

4. I will return Friday to further evaluate plan.

                                                                                           Maureen Youst RN

March 23, 1979

Elley lay on her side while I sat on the edge of the bed and held her hand. Dr. Gains stood behind her with a long hollow needle. He pushed and twisted the needle into her hip bone. First he aspirated some liquid from the marrow. Then he withdrew the needle, changed it and inserted a new one. Finally he pulled on the syringe to suck a fragment of the bone itself into the needle. The pain was foreign and excruciating.

March 25, 1979

3:00 PM

Pancytopenia & AML

S: “My hair is starting to fall out.”

O: Pt’s hair has started falling out of head, axilla, and groin area. Pt was aware this was side effect of Adriamycin and did not seem too upset.

VSS. T:996–992. CBC (complete blood counts) results not back yet.

A: Stable.

P. ✓ counts. Await bone marrow results.

                                                                                                      L. Dillon RN

3:10 PM


O: Hematocrit=32.6 WBC=1000 plat=1000. Mouth is clear. No sign of infection. There are small petechiae present on legs and arms. No other signs of bleeding. Pt was beginning to have alopecia so she requested to have her head shaved—which was done today. Pt taking po well so IV has been d/c’d (discontinued).

                                                                                                      L. Dillon RN

March 27, 1979

12:00 pm

? Shock ? Denial ? Acceptance & need for 2nd chemo.

S: “I’m going to start chemo tomorrow AM.”

O: Pt upset & crying on news of counts. Family & MD supportive by 6:30 pm. Other friends visiting & share news of 2nd chemo regime. Pt quiet & semi anxious yet appears accepting. Questions about effects of 2nd course. Holds hands c boyfriend.

A: Anxious, yet hopeful.

F: Support c factual info (information). Explain all procedures as they are done; be frank but optimistic; relate counts as they are learned; provide for phoning c family, friends.

                                                                                                      C. Small RN

March 31, 1979

The doctors and nurses have tried various treatments to alleviate Elley’s throat pain. Their best remedy is a 10• cocaine elixir that only gives slight, temporary relief. We have repeatedly asked for a less diluted solution, but they claim to be doing all that they can. Elley and I split the dose, since getting high together is more satisfying than the pain relief. The doctors can’t find the source of the throat infection and are therefore unsure of how to treat it. Elley sleeps through long parts of the day to escape the pain.

Apr 2, 1979

Progress Note

S: Feeling better this afternoon. Says she feels very weak & tired in AMS but better in the afternoon. Throat still sore but better. Mouth slightly sore.

O: T-9-99 po.

Neck: sl tender R cervical area but o nodes.

Throat: post ph (posterior pharynx) sl eryth o exudate.

Mouth: mucous membrane o ulcers/lesions.

Hct=34 WBC=1.1 96 lymphs 4 blasts plat=6000.

A: Blasts in peripheral smear very disturbing. The 2nd course of chemo has not had time to exert maximum effect yet, so hopefully will do better in next few days.

P: Survey culture done.

                                                                                                      H. Lerner MD
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Originally published in

BOMB 2, Winter 1982

Tim Burns & Jim Jarmusch, ABC No Rio, Charles Ludlam & Christopher Scott, Jacki Ochs, Michael Smith, Mirielle Cervenka, Gary Indiana, Sonia Delauney, and Phillipe Demontaut.

Read the issue
002 Fall 1982