Critical Care Nurse Becomes

by Nancy Murphy

HAVE been a critical care nurse for eleven years, special- izing in recovery room nursing open heart nursing, CCU, and ICU nursing. I worked in the Montefiore Hospital, Bronx,

N. Y., as Senior RN in the recovery room/Open Heart Unit for seven years and in Palisades General Hospital, North Bergen, N.J., in the CCU for three years. An additional year was spent as a critical care float at Englewood Hospital also in New Jersey. During these years I have cared for the most acute patients with all of the sophisticated monitoring devices available.

On October 8, 1983, I was working as charge nurse on the night shift in Englewood Hospital’s Neuro-Intensive Care Unit, caring for patients who had undergone craniotomies. Little did I know that ten days later I would be in this same in- tensive care unit recovering from my own crani- otomy. How could this be happening to me? I am

the nurse who took care of these patients. Now I have to accept being the patient!

I was not prepared for what was ahead of me. Since then I have learned how difficult it is to be a patient, especially one facing a serious diagnosis. I had worked long enough to know that doctors shade the truth of their patients’ diagnosis from patients and their families. Now I was the patient, but also a person with some medical knowledge. The more questions I asked the more I was led to believe that everything was fine. I wanted to read my chart, especially the pathology report, but I was asked if I trusted my doctors. On one hand I did trust my doctors but on the other I wanted to know everything I could about my illness. I didn’t read my chart while I was in the hospital but now that I am feeling stronger I am doing my own research. If I am struggling to find the answers, what about patients who have little or no medical knowledge who want information? Aren’t they en- titled to answers, too?

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Critical Care Patient This is how my story began. . . . Since 1974, I had had occasional migraine

headaches. I was treated at the Montefiore Hospital Headache Unit, in the Bronx, N.Y. As there was no CT scan at the time, an EEG and skull X-ray series were performed which proved to be normal. I also have allergies, especially hay fever, which causes sinusitis. I was placed on Fiornal one tablet q4h prn. When my headaches became less frequent, I stopped going to tlhe Headache Unit.

In general, my physical health had been good. I had two boys; one born in January, 1978, and the other in July, 1980. I had no physical problems during or after my pregnancies. At the same time I was working full time at Montefiore Hospital and attending school part time in pursuit of a B.S.N. degree. I was graduated and stopped working in June, 1980, shortly before the birth of my second son. In late August, 1981, 1 became pregnant again. Throughout the pregnancy I had episodes of high blood pressure, occasioiial headaches, and periods of feeling weak and faint. My obstetrician thought I might be heading for toxemia but it never developed. My blood pressure went back to normal at the time of delivery and my daughter was born in May of 1982.

I went back to work part time on weekends at Palisades General CCU Unit, North Bergen, N.J. In January, 1983, I started ha.ving short memory lapses. I would take a patient’s vital signs and forget the readings right after taking them. I would have to retake them and write them down immedi- ately. Remembering what was said during shift reports and telephone conversations also became a

problem. My headaches started again, but were relieved by Fiornal. However, I never felt right, always tired, and found it hard to remember things. I blamed this on being a housewife/work- ing mother with three small children.

Then sometime in April, 1983, I almost blacked out at home while reading the paper. I became nauseated and had banging in my ears. My blood pressure and heart rate were normal at this time. I saw a cardiologist immediately who did a complete cardiac workup: echocardiogram, EKG, chest X-ray,-stress test, and Holter monitor. He found that I have a very slight mitral prolapse and tachycardia, with bursts up to 160 rate, and placed me on Inderal 10 mg bid. If I didn’t improve I was to be seen by a neurologist.

I researched the use of Biofeedback; a technique that uses electrodes to monitor the body’s ability to relax, which in turn decreases the heart rate. It also helps with migraine headaches. I learned several exercises while attending Biofeedback classes. I learned to control my body by learning how to relax. My heart rate returned to normal and I was weaned off Inderal completely.

I finished Biofeedback and continued to have an occasional short memory lapse. Brief episodes of blurring vision began at this time. I had two migraine headaches which confined me to bed for the day. In July, 1983, I saw a neurologist and upon physical exam he found everything normal. His instructions were to call him if I developed any changes.

The last week in September, 1983, I developed the worst headaches of my life. They were different

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from regular migraines. It felt like my head was ex- ploding. I could barely lift my head off the pillow. I slept on two pillows to help relieve the pressure I was feeling in my head, I called my neurologist and was placed on Bellergal one tablet QID. Each tablet contains phenobarbital, 20 mg ergotamine targrate, a sympathetic inhibitor, and 0.3 mg Bellafoline as a parasympathetic inhibitor.

On October 6, 1983, the pain became unbear- able. I called the neurologist to ask him if I could possible have a brain tumor since the headaches were different from my migraines. .He said, he didn’t think this was a possibility because of his findings in July. Nevertheless, he scheduled an EEG and CT scan for me on October 12th, as an outpatient, just to make sure. A follow-up ap- pointment was made with the neurologist for the next day to go over the results of the tests. At seven on the night of October 12th, I received a phone call from the neurologist which shattered me. The CT scan showed a shadow, most likely a tumor, in the right temporal area. I was to go to Englewood Hospital immediately to be admitted. My husband and I had to pack up our three small children and drop them off with their grandparents.

The nightmare was just beginning. I met with my neurosurgeon who thought, from the CT scan and arteriogram which followed later, that I had a tumor but it appeared to be benign. It was on the more dormant side of the brain and was approx- imately the size of a baseball. My prognosis was good and I should not have any motor deficits afterwards. Surgery was booked for 9:OO A.M. on the 18th of October. I celebrated my 31st birthday on October 15th in my hospital room.

I chose my neurosurgeon and anesthesiologist because I had worked with both of them and trusted their work.1 knew my neurosurgeon always ordered the entire head of his crainiotomy patients shaved as a prep the night before surgery. The very thought of being bald, of losing my long hair was unbearable. It just added to my terror and anger that this was happening to me. I asked the neuro- surgeon if he could have just the right temporal area shaved and leave the rest of my hair intact. He agreed and the nurses on the pre-op floor combed my hair in numerous braids and pulled them to the left side of my head. I can’t even begin to tell you how important it was for me to be able to keep part of my hair. By combing the hair over the incision I

was able to cover it one week after surgery. On October 18, 1983, at approximately noon, I

arrived in the recovery room and was thankful to open my eyes and see the nurses I had worked with in the past, and to be able to move all my ex- tremities. It was so good to hold my husband’s hand again. I was alive and intact!

The tumor was described as a astrocytoma grade 11, with an excellent prognosis. Most of the tumor was removed, but as some cells were left I would need radiotherapy for six weeks. What did all this really mean? My physicians never mentioned the word cancer to me. I was doing well and had no physical deficits. What more did I want? I felt I needed to know more. Why didn’t they say it was cancer and that I would probably need chemother- apy in addition to the radiation? I had to get a booklet from another hospital explaining radiation and its side effects because it wasn’t explained to me. The information in that booklet prepared me to buy a wig styled like my own hair weeks before it started to fall out. I refused to walk around bald.

While I was in the hospital I was taking approx- imately 20 mg of Decadron a day in divided doses. The medication was an effort to reduce the cere- bral swelling and papilledema of my right eye both prior to and after surgery. When my neurosurgeon would try to decrease the amount Decadron I was receiving I would get severe headaches. I was talk- ing and doing activities much too quickly. My doc- tors said that it was probably the Decadron, that the problems would subside as the dosage was decreased.

1 was released from the hospital on October 28, and on October 31 I developed a Decadron psy- chosis; the worst case my neurosurgeon had seen in the last ten years. I was in a manic state and had to be readmitted to Englewood Hospital, but this time to the psychiatric floor.

When corticosteroids are used, psychic derangements may appear. They range from euphoria, insomnia, mood swings, personality changes, and severe depression to frank psychotic manifestations.

Mental and personality changes occur frequently in patients with intracranial neoplasms. A promin- ent manifestation is confusion consisting of im- pairment of the patient’s awareness accompanied by defects in attention span and memory, and a

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loss of normal appreciation for and perception of the environment. The person may be unaware of time, place, or identity of st:lf or others (Jones, et al., 1979)

I became a very difficult patiient to manage because I didn’t see anything wrong with myself even though I sincerely believed I had had a vision from God and had to save the world from nuclear war. I was placed on Lithium Carbonate, 300 mg qid, as Lithium alters sodium translport in nerve and mus- cle cells and effects a shift toward intraneuronal metabolism of catecholamines, but the specific biochemical mechanism of Lithium action in mania is unknown (PDR, 1979).

I was eventually weaned off the Decadron, radiotherapy was finished, and the cerebral edema and papilledema I had experienced in my right eye (the operative site) was impIoving. It took several months of taking Lithium, having Lithium blood levels drawn, and seeing a psychiatrist before I got back to my normal state of mind. I never had mood swings or emotional instability prior to my surgery. It was very difficult for me to face what happened, especially since remembered all my delusions. This was a surgical complication and the one least expected for me to have. It was very em- barassing to be a psychiatric patient in the hospital in which I had worked. There were so many prob- lems for me to deal with: recovering from my surgery; searching for the truth about my diag- nosis; accepting my cancer; and becoming emo- tionally stable again.

I am pleased to say that I have been completely off the Lithium since July 1, 1984. I am psycholo- gically stable and no longer need to see a psychi- atrist. Since March of 1984 I have been receiving chemotherapy every six weeks with little or no side effects. A CT scan done in September of 1984 showed no signs of tumor regrowth. I completed my radiotherapy months ago and my hair has grown back slowly.

Since I had never worked on an oncology unit, my knowledge of neoplasms of the central nervous system was limited. When I was recovering, I call- ed the Cancer Information Center in New York for more information on astrocytomas and their treat- ment with radiation and Chemotherapy. I read that

Cerebral astrocytomas comprise the single largest group of primary brain tumors. They may

be located at any site and range from low grade (Grade I) to high grade (Grade IV in malignancy. For low grade lesions located in surgically accessi- ble sites, surgery is the basic treatment. Posterior, frontal or temporal and partial lesions are often diffuse with infiltration of surrounding brain, even though low in histological malignancy. Thus biopsy is the relevant surgical measure unless the tumor is well encapsulated and can be separated cleanly from surrounding brain.

In most available studies comparing survival in patients with incomplete removal of Grade I or I1 tumors who received localized irradiation with doses in excess of 5000 rad compared with unir- radiated patients treated in the same period at the same institution, show a significant advantage for the irradiated group.

Low grade gliomas (astrocytomas, Grade 11) are located on the histopathology continuum of gliomas somewhere between benign astrocytomas and those which truly show malignant tendencies. To whatever extent possible a re-review of the pathological material, the clinical course of the pa- tient, the surgeon’s notes, and a neuroradiologic presentation of the tumor should be undertaken so as to attempt to either declare it of the low grade astrocytic series or recognize its malignant poten- tial. There is some question as to the indications of chemotherapy in the low grade gliomas. As noted above the value of radiotherapy is unproven but it is indeed highly suggestive (Memorial Sloan Ket- tering Cancer Center). As my tumor fell into the above category my

physicians decided to treat me with the chemo- therapy agent BCNU or Carmustine, an alkylating agent. The dosage is based on height and weight (surface area) and is given 100 to 150 mg in- travenously for two days every six to eight weeks.

The anti-cancer drugs used in chemotherapy produce more extensive injury to cancer cells than to normal cells and the physician maintains a delicate balance between dose and frequency by giving enough chemotherapy to kill cancer cells without destroying too many healthy ones. Side ef- fects and toxicity are:

1) Nausea and vomiting approximately two hours after injection. Pretreatment with antiemetics can alleviate its severity. [I took Compazine 15 mg im- mediately after the treatment and had no prob- lems.] 2) Hepatotoxicity-this is mild and reversible. It is uncommon but more prevalent than with other chemotherapy agents.

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3) Myelosuppression - this is the major dose limiting factor. The marked delay in hemtopoietic toxicity characteristic of this drug occurs regardless of the dose or schedule. In general theombocytopenia occurs first and improves more rapidly than leukopenia. 4) Local burning along the vein of injection has been reported in association with the flushing of the skin, When the drug is infused too quickly pigmentation can occur along the vein of injection (Memorial Sloan Kettering Cancer Center).

I received BCNU every six to eight weeks with periodic CT scans to check for possible regrowth and/or swelling. I had some papilledema prior to surgery and after. The papilledema subsided as of March, 1985; chemotherapy was discontinued June, 1985. I am on phenobarbital 30 mg 1 tablet tid and 2 tablets hs. od. I have never had a seizure and this is a preventative medication against seizure for the rest of my life. I have to have periodic phenobarbital blood levels. I have to see my neurologist every four to six months and my oncologist every six to eight weeks for check ups.

I am not ready to return to work yet as the phenobarbital makes me drowsy, but eventually I will develop a tolerance to it. I am just happy to be alive and home with my family. I will continue to fight this cancer and keep up with my research. My only regret is that while I was in the hospital the physicans did not ask someone from the Cancer Society to speak to me. I would have liked to talk to someone who was recovering from brain cancer or any cancer patient. It is hoped that some day soon patients will get the right amount of informa- tion from their physicians to understand their con- dition. My current plans include trying to help other cancer patients to learn more about their cancer and how to fight it. My husband and I now attend an American Cancer Society support group.

When I worked in critical care units most of our patients with cancer were terminal. Seeing their condition made me think that cancer was an im- mediate death sentence. Since then I have learned that cancer can be conquered. I am happy to report that each CT scan has shown improvement from previous CT scans. There is no longer any en- hancement. In other words, cancer growth can not be seen. The BCNU has worked. I am feeling well and thankful for the help and support I have received from my family. I will probably need

medical follow-up for the rest of my life but that is a small price to pay to be well. I am looking for- ward to going back to caring for critical care pa- tients. I feel that I will be an even better nurse because of my own experience as a patient.

We, as nurses, must help our cancer patients to reveal their true feelings. We should also assist them in getting the information they need. It is the most frightening time of the patient’s life. Patients may feel as if they are being left in the dark won- dering what their fate reallly is. Patients need to talk, but sometimes the ice has to be broken first. It is difficult for cancer patients to talk about their fears, especially concerning death and dying and who will help their families. I went through all these feelings even though my cancer is of a lower grade. I kept most of my feelings to myself and tried to work them out on my own. I could have us- ed some honest answers right after surgery when I asked for the truth.

I offer the following suggestions for patients and families based on my own experiences:

If someone is having persistent headaches which become more painful than usual, a constant ache or soreness, located in the back, front, or side of the head or behind the eyes, often present upon waking in the morning, he or she should be check- ed by a neurologist. Obvious symptoms such as vomiting, impaired speech, hearing loss, ringing and buzzing in the ears, small muscle weakness, lack of coordination, balance problems, changes in personality, drowsiness and seizures, all warrant a check by a neurologist. Remember, however, even in my case I had seen a cardiologist then a neurologist and had been diagnosed as neurologically intact. It was not until I insisted that my headaches were different from my migraines and that something was wrong with me did the neurologist do a CT scan to alleviate what he con- sidered my unfounded fears. Individuals basically know their own bodies and can tell when some- thing is not right. It may mean visits to several physicians before the right diagnosis is made. My brain tumor was there for several years without be- ing detected because I was not showing any neuro- logical deficits. My tumor would have continued to grow and become a more serious problem in time if left undetected. I feel I owe my life to a CT scan.

Once faced with the diagnosis of brain tumor re-

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quiring surgical removal 1. made sure I would be operated on in a reputable medical center under the care of a capable neurosurgeon and anesthesi- ologist. The patient has to feel comfortable with his doctors and be encouraged to ask plenty of questions. It may be helpful to write the questions down before going to see the physician and to take notes when getting the answers. The patient might also want to make use of a tape recorder if he or she is not too nervous to ask questions or record the answers. Some physicians will even tape their ex- planations of the impending surgery as part of ob- taining the patient’s consent for surgery. The pa- tient can check the Directory of Medical Specialist or the doctors certified as surgeons by the American Board of Surgery for a list of competent physicians in their own area. Another source is the patient’s state or local medical society.

After the patient is admitted to the hospital the nurses have to help the patient to ask for and receive the necessary information about their diagnosis, surgery, and follow-up treatment. Un- fortunately, I have found doctors to be very evasive with patients and families. Nurses have to try to get physicians to spend more time with their patients.

We nurses have to help patients get the right referrals to organizations such as the American Cancer Society. This toll free number is 1-800-4-CANCER, which will put patients and families in contact with support groups located in their own area. Information is also available on the patient’s cancer, treatments, and places to call for other support services. (These support services in- clude financial assistance, transportation, help in the home, free wigs, and other services.)It took me an entire year to find out about this toll free number and the American Cancer Society support group in my area. It is sad that not one of my doc- tors, especially my oncologist, could recommend it. The group has helped me and now I volunteer in hopes of helping others to deal with their cancer or that of a member of their family.

References Physicians’ Desk Reference, 33rd Edition,

1979, Litton Industries, Inc., Oradell, N.J., pp. 836, 1366.

Memorial Sloan Kettering Cancer Center, Infor- mational articles on the Central Nervous System and Carmustin BCNU, Office of Cancer Com- munications, New York, N.Y.

BOUND VOLUMES AVAILABLE

If your bound volume sets of Perspectives in Psychiatric Care or Nursing Forum are incomplete, we have g d news for you. Thanks to the cooperation of our subscribers who responded to our call for out-of-print single copies of certain issues, we are now able to provide complete bound sets of back issues of both our journals while the supply lasts. Your librarians will appreciate your bringing this memo to their attention. Bound volumes from Volume 1 of both journals are now ready for mailing.

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