Rachel began having occasional headaches beginning January, 1995. We thought nothing of it. I suggested that she mark the calendar whenever she got a headache and to our surprise, we discovered that they all coincided with the second day of her periods. On August 1, 1995, she got another headache, right on schedule. But this one did not go away. After several days, she went to our family doctor who prescribed migraine medications. When this did not work, we finally went for a CT. The date Monday, August 28, 1995 will be forever etched in my mind. It was at night. Rachel was in agony as we arrived at Assuta Hospital in Tel Aviv. When our turn finally arrived, I insisted on standing by her side. They thought I was overreacting, but agreed and gave me a lead apron. After about two minutes of scans, the technician came out and asked me if I was sure that her headaches had only begun a couple weeks before. I knew something was wrong. We waited for the radiology report and read it immediately. Rather than the “normal” which we expected, we got a two page document describing lesions all over Rachel’s brain. There were three of 20-25 mm diameter, and the rest were smaller. Rachel had a feeling this was not good. I was sure of it. When we got home that night, Rachel was exhausted and went right to sleep. I was up into the small hours of the night, memorizing her scans and crying.
Rachel had scheduled a job interview for the next day. She intended to keep her appointment. The job involved translating documents from Hebrew to English with the Defense Ministry. The interview included a psychometric test which involves figure/shape associations and relationships. This evaluates your effectiveness under pressure. After the test, her interviewer told her that the results indicated that she might not function well under pressure. She said "You want to know about pressure? I have just been diagnosed with a head full of tumors! What do you say to that?" Needless to say, we never heard from the Defense Ministry again.
That afternoon, Rachel called her parents in Baltimore and told them the bad news. At the same time that Rachel was speaking with her mother, her brother David, who lived in New York, received a message that he was needed in Baltimore. David is a mystic who gets messages from God. I believe that David is for real. There are too many unexplainable things that happen when he is around. When he arrived in Baltimore, his parents told him what was happening to Rachel. He then understood why he was summoned. He was to deliver a prayer. It is from end of the Aleinu prayer in the Jewish liturgy. This prayer is recited three times a day. It is composed of three passages, the first from the book of Proverbs and the second two from the book of Isaiah. "Be not afraid of sudden terror, neither of the destruction of the wicked, when it cometh (Proverbs Ch. 3, v. 25). Take counsel together, and it shall be brought to nought; Speak the word, and it shall not stand; For God is with us (Isaiah Ch. 8, v. 10). Even to old age I am the same, and even to hoar hairs will I carry you; I have made, and I will bear; Yea, I will carry, and will deliver (Isaiah Ch. 46, v. 4)." The Hebrew has a poetic beauty which does not translate well. The message of this prayer, said David, was that whatever it is that Rachel has, she will be fine in the end. The road will not be easy. There will be suffering. But the final outcome is already known. Rachel will live. Though we were not sure what to make of this, it gave us hope. We already knew that there was more to David than meets the eye.
That night, I called a family friend who is a surgeon at Shaarei Zedek Hospital in Jerusalem. I asked him what to do. Our family doctor wanted to refer us to a neurologist. This friend said "You need an oncologist." I was not surprised. But still, I was shocked. He put us in touch with a senior oncologist at his hospital and we set up an appointment the next morning for that same afternoon. After a beautiful hour’s drive to Jerusalem, we got out of the car and Rachel fainted in the parking lot. The date was Wednesday, August 30, 1995. The doctor saw us after a short wait. I remember sitting in the waiting room my arm around Rachel. We were a scared, young couple, completely unaware of the upheaval ahead of us. After looking at the CT films, he examined Rachel. He explained that there were several tests which he wanted performed. He could send us home with referrals and we could do them at our leisure. However, given that Rachel had fainted shortly before, he suggested that it might be better to admit her to the hospital and do all of the tests on an inpatient basis. We readily agreed. The admission form which he wrote up had the following diagnosis: multiple brain mets, unknown primary.
We were unprepared for an overnight stay, so I went to buy some basics: toothbrush, toothpaste, socks (Rachel always had cold feet at night, even in summer). Rachel’s brother, Israel, lives in Jerusalem, so I went shopping in his neighborhood. I stopped off at his house to tell him our bad news. I collapsed on his shoulder and cried that I did not want Rachel to get to the point where she is nothing more than a shell of a person hooked up to tubes in a hospital. How close this image came to the truth in the end, albeit only for a few hours.
I left Rachel in the hospital that night and drove home to care for my kids. During the next day, a battery of tests were performed: full blood tests, whole body CT, and others. That Friday, she was sent home since no tests are performed on Saturday. We were to return Sunday.
We went straight from the hospital to pick up our daughter Hadas from her first day in first grade. Rachel was upset that morning because for the first time ever, she did not accompany our child to school on the first day of first grade. I had brought Hadas to school in the morning and then driven to Jerusalem to bring Rachel home. She was so pleased to be able to be there to pick her up in the afternoon. It was so important to Rachel that she be there for her children.
That Friday, September 1, 1995, was my 41st birthday. My kids had prepared a surprise party for me when we got home. It was a golden moment. We had not mentioned cancer to the kids yet, and we were all so happy. It was the kids’ last moment of innocence. After the party we sat the kids down at the table and explained that we believe Mommy has cancer. We explained a bit about cancer, that yes, it is bad, but that many people don’t die from it and that Mommy would not die from it. We had decided from the beginning to be candid and upbeat. We ourselves were optimistic, since we had her brother David’s prayer with its promise of recovery and living to old age. The kids did not really take it all in. They did not know what to make of this news. It had no meaning since Mommy looked perfectly normal. She was not sick. How their lives were to change!
Rachel went back to the hospital on Sunday, September 3, 1995. More tests. One of the CT films showed something suspicious on the pancreas. They were going to do a needle biopsy of the pancreas under ultrasound guidance, but when we hooked Rachel up to the ultrasound, there was no tumor there. False alarm? In retrospect, maybe not.
There were also three lesions on the periphery of her left lung. A fine needle aspiration failed. It was decided to perform a thoracotomy, an open lung biopsy. We had no idea that this was major surgery. On September 12, 1995, under general anesthesia, Rachel had her operation. Afterward, I was allowed into the recovery room. Poor Rachel was out of it. She was naked, covered with a sheet, and mumbling that her back hurt. She was saying that she wanted to lie down. She was lying on her back. She woke up several hours later. She stayed in the hospital for several days after the operation because of a pneumothorax and fluid in her lung cavity which had to drain. We got the biopsy results a couple days later. No cancer! The pathologist saw Pulmonary Embolism. A blood clot. We breathed a sigh of relief.
We spent the following weeks trying to understand how her brain could also be full of pulmonary embolism. One doctor told us "You have been given very good news!" I asked him how to explain the brain lesions. He had no ready explanation, but added that the chances of Rachel having one disease in her lung and another in her brain were infinitesimal. I mentioned that even that is a real chance, and that the person who has a one in a million disease has that disease 100%.
We became more and more dissatisfied with the hand waving explanations of how these lesions got to Rachel’s brain. We got the name of a neurosurgeon at Hadassah who was the friend of a friend. In preparation for this, we had an MRI performed. He saw us immediately. He thought, based on the MRI images, that the brain lesions were tumors. He presented the case before the neurosurgery department and the recommendation was to perform a stereotactic biopsy. The biopsy was scheduled for the following week. We checked in on the next to last Sunday of October, 1995. The biopsy was the next day, and we checked out the day after the biopsy.
That Friday morning, we got a phone call from the neurosurgeon. He told Rachel that he would prefer to see us in person, but that he believed we would have wanted the news as soon as possible. He was actually quite brave. We were both sitting on the sofa. Prepared for the worst, I put my arm around Rachel’s shoulder. She listened calmly to the doctor. Then, suddenly, she let out a long, loud, piercing wail and began crying. I took the phone and spoke with the doctor. He told me that the diagnosis was papillary carcinoma. We later had the slides reexamined by other pathologists and the revised diagnosis was poorly differentiated adenocarcinoma with no indication of the location of the primary tumor.
We were in shock. Somehow, we got through that day. I don’t remember if we told the kids that Mommy does, indeed, have cancer. I believe that we told them that same day. We never wanted them to hear anything about Rachel’s illness from anyone else. We certainly told them the good news a month earlier that Mommy did not have cancer, when her lung biopsy showed only pulmonary embolism.
That evening and the following day was the Sabbath. The Jewish day begins with sunset. I would normally go to services with the kids, while Rachel would stay home. That evening, I did not want to leave her alone, and sent the kids to services by themselves.
The following morning Rachel decided not to come along to morning services. After services, I tried to get out in a hurry. I did not want to speak with anyone. However, several friends managed to corner me with the question “Where’s Rachel?”. I told them, without too much elaboration what the situation was. They were stunned. That afternoon, several friends came over for a quiet visit. It was very nice seeing Rachel holding court.
There is a rabbi in a city called Bnei Brak who has made it his business to know the best doctors for any given problem. He is a remarkable one man referral service. He has no medical training. Yet, people come to him from all over the country. We understood from several oncologists both in Israel and the U.S., that the treatment would be whole head radiation. Rabbi Firer put us in touch with a doctor at Sheba Hospital, Tel Hashomer who would handle this. Rachel underwent 22 treatments from mid-November to mid-December, 1995. Our synagogue community is so wonderful that as soon as word was out that Rachel would be traveling to the hospital every day for a month, a driving schedule was organized so that I would not have to drive her every day. People were lining up for the opportunity to spend the afternoon with Rachel at her radiation treatment.
We finished radiation in mid-December and had our follow-up CT at the end of January, 1995. The CT showed that the tumors had not responded to the radiation. We were devastated. We had expected that the radiation would do the trick. True, they had not grown, but we wanted more.
We switched to Hadassah Hospital in Jerusalem. Since the disease did not appear to be progressing, we were advised to wait and see. This seemed reasonable to us. In April, we did another CT which showed minimal growth. We continued to wait.
Rachel’s headaches were under control this entire time thanks to dexamethasone. We were tapering her dose all the time in an attempt to keep it as low as possible. In mid-June, 1996, we got too low. Rachel’s headaches returned with a vengeance. CT showed massive edema in her brain, the same finding that we saw in August, 1995. Rachel was hospitalized and put on high doses of dex in order to control the edema. It worked. After three days in the hospital, Rachel was released, free of headaches, but on a higher dose of dex.
While still in the hospital, we did another whole body CT. The tumors in the brain had grown a bit. There was a tumor now in her left lung. There was also a suspicious shadow in her pancreas.
We were considering bronchoscopy to see what was in her lung. Rachel decided to delay the procedure, since she had heard how unpleasant it could be. God felt otherwise. On July 11, 1996, while at the Western Wall in Jerusalem, Rachel began feeling severe chest and upper back pains. A friend brought her to the emergency room at Hadassah where I met her. X-ray showed that her left lung had completely collapsed. She was scheduled the following morning for the procedure which she had hoped to avoid, bronchoscopy. Rachel had six bronchoscopies all told. She always felt this was retribution for avoiding the procedure in the first place. The bronchoscopy showed that Rachel had a tumor at the bifurcation of the two major bronchi in her left lung. The tumor had blocked air intake to the upper and lower lobes of her left lung, causing collapse. A passage through the tumor was opened using laser. Another crisis resolved. Rachel underwent several additional broncoscopies in the following months for brachytherapy.
In mid-July, Rachel had a few mini-seizures and headaches. The symptoms had returned. During this hospitalization, we began chemotherapy with carboplatin/vp-16. Rachel had two courses of this. All seemed to be going well. No ill effects, thanks to kytril. Her hair, which had grown back thinly after the radiation, stayed. At the end of August, Rachel had a horrible day. Major seizures, fainting, vomiting, and severe headaches showed that the chemo had done nothing. CT showed that the brain tumors had not grown, but the edema had progressed. And since there was clinical worsening of her situation, it was decided to abandon carboplatin/vp-16. The next chemo was continuous infusion of 5-FU using a portable pump. This went very well. Unfortunately, the 5-FU also did not affect her tumors.
A chance event revealed the presence of a tumor on the retina of her left eye. I had noticed that our daughter, Hadas, was turning her head slightly to look at the illustrations in the books which I was reading to her. I took her to the ophthalmologist and Rachel came along for the walk. This was in September, 1995. Rachel mentioned to him that her vision had become somewhat blurry and she had a loss of peripheral vision. So while we were there for Hadas, he also had a look in her eyes. He discovered a small tumor on her left retina. We went for a fluorscein angiogram of the retina which showed the tumor in vivid detail. Now we had to decide what to do about this. The ophthalmologists at Hadassah were recommending laser surgery. We considered radiation also. In the end we opted for the laser treatment. We did this on November 25, 1996 at the Mt. Scopus campus of Hadassah Hospital. This added another hospital to our growing list. Follow-up in January showed that the tumor appeared to be responding. This was the only piece of medical good news that we heard from the time of our diagnosis until Rachel’s death.
Rachel had been on 40 mg. dexamethasone since late August, 1996 following her seizures. The symptoms were under control, but the steroids were causing their own symptoms. Weakness in the legs, a fallen abdomen, and difficulty sleeping were some of the problems. We were constantly trying to taper the steroids in order to alleviate these symptoms. Between September and December, 1996, Rachel had lowered her steroid dose from 40 mg to 18 mg. It’s hard to imagine the courage which this took. I knew how she dreaded the return of her headaches which we knew would happen if the dose of steroids was too low. She mentions her fear of headaches over and over in her journal which she kept during her last three months. We went for a CT on December 23, 1996 to check the state of the edema in her head. Rachel had had contrast material injected many times. This time, however, she reacted and went into anaphylactic shock. She stopped breathing and had no pulse or blood pressure. A medical team brought her back to life.
As a result of Rachel’s most recent CT experience, she could no longer use this as a method of assessing the state of her disease. Now we would need MRI for the brain, bronchoscopy for the lung, ultrasound for the abdomen, and bone scans for the bones (CT of October, 1996 had indicated some bone involvement).
Radiology reports beginning June, 1996 mentioned a suspicious spot in Rachel’s pancreas. We went for an ultrasound on January 14, 1996. I was with her as I was for every other procedure. Every screen which came up showed a dark circular mass which the technician would mark for measuring. I knew that this was not good. There were too many of these masses. On the way out of the ultrasound room, Rachel asked me what I saw. I hedged and answered "Bubbie, I’ve become an expert on CT, but not on ultrasound. Let’s wait for the results." She said to me "I’ve got a bad feeling about this. But while lying on the table in there I got a message from God. I’ve never gotten a direct message before. It said that whatever this test shows, I will be able to handle it". And she did. We got the report a half hour later. It spoke of a tumor in her pancreas about 2.5 cm diameter. It said that her liver had multiple metastases, the largest was 3.7 X 2.3 cm. We knew that this was bad. But Rachel said "The same miracle which will deal with my brain, eye, and lung will also deal with this." She was amazing.
That afternoon, we went for a bone scan. I only got the results of that test three weeks after Rachel’s death. The bone scan showed metastases in her pelvis and vertebrae.
We were scheduled to go in on January 20 for a pulmonology exam. Then on February 9 for a brain MRI. Then on March 11 for an eye ultrasound. None of these exams were to be.
Rachel died on January 20, 1996 after setting out on her way to her favorite activity: sitting in a cafe and writing in her journal. A description of her last day and funeral is elsewhere at this site.
We had become acquainted with many hospitals. They were (in order of appearance): Assuta (Tel Aviv) original CT; Shaarei Zedek (Jerusalem) initial hospitalization; Rambam (Haifa) blood work after diagnosis of pulmonary embolism in lung; Hadassah Ein Kerem (Jerusalem) brain biopsy and later care; Beilinson (Petach Tikva) confirmation of pathology report; Sheba (Tel Hashomer) head radiation; Kaplan (Rehovot) ER during fever between chemo, psychooncologist; Hadassah Mt. Scopus (Jerusalem) laser eye surgery. Apologies to any which I may have forgotten.