02/08/14 14:30
Who can find a virtuous and capable spouse?
He is more precious than rubies.
-- improvisation on Proverbs 31.10
The Caretaker’s Story
For this particular page, I’m going to invite a guest author: my husband. This wasn’t just happening to me, it was happening to him, too. (And six months later he came down with the shingles to prove it.) As the patient, I had my first truly abrupt realization about what my husband was going through when he told me that our cancer center was having a class on the issues for the family members of patients. I checked my chemo schedule and the date looked doable, it was going to be held during one of my “good” weeks, so I said I could probably go to it. “No,” my husband practically shouted, “It’s for the families of cancer patients.” I laughed because he sounded like a kid hanging a sign on his tree house saying no girls allowed. My next thought was that he probably did need a forum to ask the questions and discuss the things he couldn’t in front of me. And I was really glad he was going to get that. When I asked him for a piece to put on this site, here's what he was willing to say in front of me. He’s not a native speaker of English, but he’s a beautiful writer all the same.
Cancerland
During the summer and autumn of that year, I realized that my wife was not feeling well. She scheduled a series of doctor visits that included a sonogram and a visit to a gynecologist recommended by her PCP. I did not fully understand the exact nature of those examinations and what they were looking for. In retrospect, it is strange that I could not figure out where we were heading toward. I was indeed not looking that way. There was a particularly painful examination my wife went through, and so I had driven her to that appointment. That was a biopsy. I was still unsure what they were looking for. Two weeks later, we went together to hear the result of the examination. I offered that we go to that one together, too. I felt it was necessary, but I did not know why.
A gynecologist's waiting room is not a comfortable place for men. It was worse than usual that day. I was flipping through one magazine after another magazine. I had a feeling something bad may happen if I was not careful enough. Her turn came. She got up and a nurse took her to one of the exam rooms. I was staring after them like it would prevent bad things. To my surprise the door opened within a minute. I heard a voice say, “Bring ...” I thought the doctor was sending the nurse to fetch something. I was right. The nurse came out to bring the husband. When I entered the exam room, I saw my wife sitting. She looked up at me with eyes almost like she was in a dream and said, “She says I have cancer.” This is how we went to Cancerland.
Unlike Disneyland, Cancerland is not far from home. Men and women, young people, old people and even children live in Cancerland. They don't appear to be different from regular people. They don't act differently. In most cases, the people in Cancerland don't look sick, either. You can see people in worse shape at the local Safeway store. The difference is mostly state of mind. Everyone in Cancerland is acutely aware of our mortality. In cancer research as well as treatment, a five years survival rate is often discussed. The five-year survival rate of any random group of people might not be 100%. But, healthy “normal” people don't have to think about it.
Cold Winter
In the Pacific northwest, we usually have a mild winter with light snow, except for a few cold waves which happen only occasionally. In the week following the diagnosis, we had such an arctic blast. The temperature dropped to 20 F, and we had unusually clear days. Looking into the deep blue sky, I realized that I am in a different place now. The familiar landscape of our neighborhood, muddy paths in the alleys, bare trees with ivy climbing on them, the dying blackberry bushes, were now covered by a shiny frost. Grass I stepped on and berries I picked up and ate during summer days looked foreign and cold like marble sculptures. I realized we had traveled a great distance from where we were three months before.
While trying to digest unfamiliar concepts such as 'tumor marker' and ' five-year survival rate', the hatred toward people who didn't have to deal with cancer grew in me. They know nothing about the life with cancer. Yet they use the term cancer a lot to represent something unwanted. Books written by cancer patients sell because people are curious to hear what dying men/women have to say. It is like people going to watch public executions who are eager to look at the condemned prisoner. They use cancer in cheap TV shows as a convenient way of getting rid of some character.
The Surgery
The surgery was scheduled at one of the major medical centers in our city. She was told to arrive there at 5:00 a.m., three hours before the scheduled surgery time. I couldn't sleep the night before. The trajectory of our lives was vastly affected by the results of the surgery. Surgeries are usually a part of treatment for diseases. In Cancerland, surgeries are a means of diagnostics as well. Cancer diagnoses are usually done by biopsy or some diagnostic imaging technology. People getting surgery generally know they have cancer. However, the extent of the cancer is only determined during surgery. In our case, we knew my wife had an adenocarcinoma in her uterus. We also knew about possible metastasis from a CT scan. But, we didn't know the exact conditions in her abdomen until the doctor got in there and saw with his own eyes.
It was a big hospital. I don't know how many operating rooms they have. There were at least a dozen patients getting operated on that morning. After some confusion about scheduling, we were taken to the surgery preparation room. At that moment, she was like a car on an assembly line. While our surgeon was getting there, various people came and did various things to her – asked questions, stuck needles, started an IV, and explained anesthesia. At 8:00, she was rolled to the surgery room. The surgeon came in his surgery outfit and met us halfway there. He had a full smile in his face. I thought, “This guy likes his job.” When I tried to follow them, I was told to leave. There was off limit sign. I kissed her and said goodbye. She does not remember it because of the medication she was given. It was around 8:00. I won't see her till noon. I had always been with her since hearing the diagnosis. This was the first time we were separated for an extended period of time.
Family members of surgery patients are given a pager as well as a coupon for the cafeteria. I was not in the mood to eat or drink. I knew they were cutting her open and she was fighting for her life. How can I taste coffee? For purely logistical reasons, I went to the coffee shop and drank two big cups of orange juice. Now, I had to kill my time. Three and a half hours is a long time for a surgery. Since I was in a hospital complex, it was a good idea to look for good resources. I consulted the hospital directory and went to the cancer resource center. I told the receptionist that I would like to consult with one of the social workers and gave my contact information. It was around 9:00. The regular weekday was beginning at the hospital. In the family waiting room, people started getting paged one by one. When the surgery is done, the family member gets to see the surgeon to be briefed about the surgery. Family members were generally calm and appeared to be pleased about the surgeries and heading to the rooms of the patients. My turn never seemed to come. What happened? It's been already three hours. It shouldn't have taken a full three hours and a half. I was waiting past the scheduled surgery time and it was noon. By this time all the other people from morning surgery had gone. Patients for afternoon surgery were arriving. Then my growing concern transformed itself into confidence because at that moment, my pager rang. I jumped up and walked to the surgery front desk.
It was not about her surgery. A social worker sent from the cancer resource center had come to see me. We sat in a conference room and talked. The social worker said that she identified me by simply looking around the waiting area. I looked so worried. She told me that the time around surgery is the scariest time. She had materials describing resources such as classes, library, support groups. We discussed about questions I had. The fact she was talking to me for 40 minutes during this crucial time was the greatest gift. Years later, I am still sending donations to that cancer resource center. By the time I finished talking to the social worker, my wife was an hour overdue. I went to the front desk and asked them to check her status. After a few phone calls, I was told that the surgeon was on the way to see me. There was still a 30-minute wait until I saw him.
The surgeon looked tired. He told me that the cancer had spread. Then he started to draw a diagram of the abdomen and explained the location of the cancer and what it had looked like (a thin blue layer, the size of a quarter coin). He mentioned a few other suspicious objects he has seen. Since there was metastasis outside the uterus he said he was going to recommend chemotherapy, radiation therapy or a combination of them. That meant we had to go through another few months of treatment. Strangely I did not feel disappointment. It is not a matter of whether I liked it or not. We had to do what was necessary. Then he said a dozen lymph nodes he had inspected all appeared to be normal. I recognized its importance. Cancer cells travel to other organs through blood vessels and lymph nodes are the gate keepers. If the lymph nodes were unaffected, there was a good chance the cancer cells had not gone into her blood. Of course visual inspection is not sufficient. He was going to send lymph node samples to the lab to be examined. I asked him a few questions. I asked if the cancer had penetrated the uterus wall. He said no. I asked if the possible metastases were adjacent to uterus. He said yes. I asked if he had switched from robotic surgery to open surgery (as he had warned us he might have to). He said only robotic surgery was done, as planned. Although chemotherapy was a drawback, I began to feel this is not bad news.
The surgery receptionist came and told me that my wife was being taken to her room. I thanked the surgeon and headed to the room. When I got to the room, she was just arriving in on a gurney. To my surprise the nurse asked her if she could move to the bed. When she said she couldn't, they lifted her and moved her. Later I found out she was not bandaged. There were five small incisions in her belly. They were glued shut. She appeared to be alert and was able to talk normally. First thing she asked was, “Am I safe?” I told her yes. That was my honest feeling. Then she asked, “What did he say?” I summarized what he said. She did not quite understand why that was good news. I tried to explain it. But, mostly I felt it was good based on my gut feeling. And my gut feeling was based on the information I had. Because of the pain medication she was given, her mind slipped away occasionally. I don't remember much of that afternoon. At one point, the doctor showed up and talked to the patient.
Toward the evening, I got tired and did not know how to think. All questions were flying around. How would she recover from this big surgery? What would be the effect of instant menopause? What is chemotherapy? How long does this continue? Are we ever going to go back to normal life? I was suffering from these noises in my mind. My wife's hospital room had an extra bed where I was allowed to stay. I went back to our house briefly to fetch the necessary items for an overnight stay.
The house looked exactly as we had left it that morning. My cat was sitting at the top of the stairway as he had been when we left for the hospital. Everything was quiet. I sat down, ate dinner and read a while. I felt the noise in my head diminish. I knew how to think. The surgeon removed the cancer and everything suspicious. Lymph node invasion was unlikely. Suspicious objects are all limited to the adjacent area of the uterus. In case something is left, she is getting chemotherapy. This is a good plan. This is not denial, either. I went back to the hospital. In her incoherent state, my wife did not realize I had been away for a while. With constant beeping from the machines and frequent visits from nurses, we had a restless night. I longed for the morning to come, staring at the lights blinking on the top of the hospital building. I noticed that the blinking red light was synchronized with my heartbeat.
The blinking lights lost their strength when the morning came. It was a rainy day. The hospital room was on the ninth floor overlooking a busy highway. To many people, that was a typical weekday morning. I was looking at it in Cancerland. They brought her breakfast. I went to the cafeteria for my breakfast. As I walked out from the elevator, I realized that the building where she was admitted was a part of “Providence Cancer Center.” Cancer center? I still could not accept the idea.
During the morning my wife was able to get up. She first tried to go to the bathroom. That went well. We then walked out and shuffled a few hallways. As we walked we saw patients in their rooms. Some of them were reading, some were watching TV and some were asleep. I kept asking myself, “Does she have a cancer?” “Him, too?” By noon time, we had explored all hallways on that floor. My wife needed a doctor to examine her to release her from the hospital. We ended up waiting several hours until a physician’s assistant (PA) showed up. We had been told that because of the less invasive robotic surgery, she would be able to go home the day following surgery. But, I had not really believed it. When the PA said that she could go home, I hurried to the car so that I could take my wife home before the PA changed her mind. We arrived home around 4:00 p.m. and she managed to walk upstairs to bed. After she fell into much needed sleep, I went to do grocery shopping. I felt lucky, like I’d been to a battlefield and got home without major injury.
My wife's recovery was remarkable. We were told that she would be bed bound for a week to ten days. But, she was able to walk around the house immediately and within a week she managed to walk out of the door. I was happy again at this time. We were living quietly, concentrating on the recovery from surgery. I tried not to think about the future plans.
The Path Report
Ten days after surgery, we met with the doctor to discuss the next step. The organs taken out during surgery had been sent to the lab and a pathology report was sent back to the doctor. The report was written in a language we couldn't understand. But, our eyes were drawn to the line stating “Stage: 4B”. That was a great shock to my wife. We both knew that the area outside of the uterus was affected, which made it at least stage 3 cancer. But, why was it stage 4B? Stage 4 is the most advanced stage of cancer and 4B is worse than 4A. The doctor told us that the five-year survival rate for stage 4B endometrial cancer is around 16%. There is no wonder my wife was devastated.
I had a slightly different reaction. After listening to the doctor’s explanation and my attempt to decode the report, I thought that there is no new problem presented in this report. The affected area described in the report is what we already knew. The cancer was limited to the uterus and larger omentum which is a part the peritoneum surrounding the uterus. Since this part of the peritoneum is located outside of the pelvic bone, the cancer was considered to have spread outside of the pelvic area. As a result, this case was categorized as stage 4. If the cancer has gone to the peritoneum below the uterus, that would have been considered to be stage 3A and the five-year survival rate for that is 79%. I did not see these categories as being logical. I said to myself, this staging may have some academic meaning. But it does not have to have meaning for us. The path report supported all the good news I heard on the surgery day – the cancer was limited to the uterus and adjacent area, lymph nodes are clean. Stage 4 is not what I wanted hear, but it was just a matter of what someone calls the situation.
Nevertheless, the doctor recommended chemotherapy. We had no objection to it. Chemotherapy was scary. But, we felt that we would do whatever it takes to fight. Chemotherapy was scheduled to start in ten days.
Chemotherapy
What I knew about chemotherapy was very little. I knew people get sick from treatment and some people die from treatment. I had hoped we wouldn’t have to deal with it. However, with doctor’s explanation after surgery, chemotherapy was not optional. After that, I never questioned whether she should receive chemotherapy. Instead I tried to figure out what is it and how it is done. What I learned is that chemo is several cycles of large amounts of infused drugs. The cycle is anywhere between a few days to a few weeks depending on the nature of the drug. The drugs have been tested and used for decades. There are other drugs to treat side effects. It did not sound impossible. I believed my wife had much strength in her body. I had no doubt she could handle it.
Surgery was already in the past. We knew what chemotherapy was. I still had fear for some unexpected event. From the beginning of this journey, we had so many bad surprises. I am always worried about some new bad surprise. It continues to this date. I am not sure when I can be free from this fear.
Fortunately, we did not experience bad surprises during chemotherapy. Things happened as planned. My wife went through six rounds of three-week cycles. The patient is given steroids before the chemo drugs. They feel upbeat for the day. For the next several days, the chemo drug slowly appears and it is the hardest week. The patient has to struggle with slow recovery during the second week. During the third week, the patient can feel he/she is gaining strength. That is the good week. The book they gave us said the patient looses her hair in the second week and that is exactly what happened to my wife. There were problems we did not expect such as heavy constipation. But it was written somewhere in the book.
We soon established a routine. My task was to maintain the rhythms of the day, week and month. The repetition of similar activities became like calm breathing. I hoped that would bring us back a normal life. Food preparation was a part of the weekly routine and was not hard. I didn't have to do fancy cooking. The patient cannot taste meals during chemotherapy. I made sure to supply balanced nutrition to maintain and enhance the patient's strength and my own. We were lucky that my employer allowed flexible work hours during this time. That made a big difference.
Instead of more bad surprises, there were finally good surprises. At the clinic where we went, chemotherapy was done in a large shared room where patients sit in a big reclining chair and wait for several hours during the infusion. I haven't seen a more friendly and peaceful place than the “chemo room.” In this quiet room dozen of patients were receiving treatments. Everyone was working on their own individual treatment. But we were bound by a common cause – fighting against cancer. In cancer life, maintaining mental health is at least as important as drugs and surgery done to you. Since each patient is the expert on their own mental state and most were willing to share their experiences with others, the conversation in chemo room is healing. There are no hoarded trade secrets. Everyone cares for everyone else.
People in the chemo room were only known by their first names. We usually didn't discuss our professional or social status since they are not important. We talked to each other when we felt like doing so. There was no pressure to keep up conversation. Silence was one of the options. My employer allowed me to work from the chemo room on my laptop. On treatment days, we packed our lunch and spent most of the day in the chemo room. We took two chairs next to each other. My wife either read or slept during her infusion. From time to time we visited other patients or nurses working in the room. I sat and worked if I was not needed. With the nice quiet environment and nice wifi, I was able to work. I enjoyed the feeling of belonging to something and working toward a common goal.
For several months, all household responsibilities fell to my hands. Since I had the luxury of working from home this wasn’t too hard. I set a weekly meal plan and just executed it. Sometimes, it was very hard for my wife to eat anything. Still, I prepared her plate every meal time. I took her for a walk every day. Eighteen weeks of chemo went somewhat fast.
A month after the completion of chemotherapy, we went back to the clinic to start the cycle of radiation therapy. We were told that radiation is not as consuming as chemotherapy. It is probably true. But, it was a psychological burden. She needed to be alone in the room and there were no other colleagues. I was allowed in the room until the therapy started. The hardest thing for me was that I had to leave her alone in the room. The radiation they use for therapy is so dangerous, everyone has to stay away, leaving her in the room.
I don’t remember when her hair started growing back. I had no doubt her hair would grow back, but hair is so unimportant at the time. I longed for regular life. The five-year mark seemed to be so far away.
I tell myself to keep climbing without looking at the summit. ###
He is more precious than rubies.
-- improvisation on Proverbs 31.10
The Caretaker’s Story
For this particular page, I’m going to invite a guest author: my husband. This wasn’t just happening to me, it was happening to him, too. (And six months later he came down with the shingles to prove it.) As the patient, I had my first truly abrupt realization about what my husband was going through when he told me that our cancer center was having a class on the issues for the family members of patients. I checked my chemo schedule and the date looked doable, it was going to be held during one of my “good” weeks, so I said I could probably go to it. “No,” my husband practically shouted, “It’s for the families of cancer patients.” I laughed because he sounded like a kid hanging a sign on his tree house saying no girls allowed. My next thought was that he probably did need a forum to ask the questions and discuss the things he couldn’t in front of me. And I was really glad he was going to get that. When I asked him for a piece to put on this site, here's what he was willing to say in front of me. He’s not a native speaker of English, but he’s a beautiful writer all the same.
Cancerland
During the summer and autumn of that year, I realized that my wife was not feeling well. She scheduled a series of doctor visits that included a sonogram and a visit to a gynecologist recommended by her PCP. I did not fully understand the exact nature of those examinations and what they were looking for. In retrospect, it is strange that I could not figure out where we were heading toward. I was indeed not looking that way. There was a particularly painful examination my wife went through, and so I had driven her to that appointment. That was a biopsy. I was still unsure what they were looking for. Two weeks later, we went together to hear the result of the examination. I offered that we go to that one together, too. I felt it was necessary, but I did not know why.
A gynecologist's waiting room is not a comfortable place for men. It was worse than usual that day. I was flipping through one magazine after another magazine. I had a feeling something bad may happen if I was not careful enough. Her turn came. She got up and a nurse took her to one of the exam rooms. I was staring after them like it would prevent bad things. To my surprise the door opened within a minute. I heard a voice say, “Bring ...” I thought the doctor was sending the nurse to fetch something. I was right. The nurse came out to bring the husband. When I entered the exam room, I saw my wife sitting. She looked up at me with eyes almost like she was in a dream and said, “She says I have cancer.” This is how we went to Cancerland.
Unlike Disneyland, Cancerland is not far from home. Men and women, young people, old people and even children live in Cancerland. They don't appear to be different from regular people. They don't act differently. In most cases, the people in Cancerland don't look sick, either. You can see people in worse shape at the local Safeway store. The difference is mostly state of mind. Everyone in Cancerland is acutely aware of our mortality. In cancer research as well as treatment, a five years survival rate is often discussed. The five-year survival rate of any random group of people might not be 100%. But, healthy “normal” people don't have to think about it.
Cold Winter
In the Pacific northwest, we usually have a mild winter with light snow, except for a few cold waves which happen only occasionally. In the week following the diagnosis, we had such an arctic blast. The temperature dropped to 20 F, and we had unusually clear days. Looking into the deep blue sky, I realized that I am in a different place now. The familiar landscape of our neighborhood, muddy paths in the alleys, bare trees with ivy climbing on them, the dying blackberry bushes, were now covered by a shiny frost. Grass I stepped on and berries I picked up and ate during summer days looked foreign and cold like marble sculptures. I realized we had traveled a great distance from where we were three months before.
While trying to digest unfamiliar concepts such as 'tumor marker' and ' five-year survival rate', the hatred toward people who didn't have to deal with cancer grew in me. They know nothing about the life with cancer. Yet they use the term cancer a lot to represent something unwanted. Books written by cancer patients sell because people are curious to hear what dying men/women have to say. It is like people going to watch public executions who are eager to look at the condemned prisoner. They use cancer in cheap TV shows as a convenient way of getting rid of some character.
The Surgery
The surgery was scheduled at one of the major medical centers in our city. She was told to arrive there at 5:00 a.m., three hours before the scheduled surgery time. I couldn't sleep the night before. The trajectory of our lives was vastly affected by the results of the surgery. Surgeries are usually a part of treatment for diseases. In Cancerland, surgeries are a means of diagnostics as well. Cancer diagnoses are usually done by biopsy or some diagnostic imaging technology. People getting surgery generally know they have cancer. However, the extent of the cancer is only determined during surgery. In our case, we knew my wife had an adenocarcinoma in her uterus. We also knew about possible metastasis from a CT scan. But, we didn't know the exact conditions in her abdomen until the doctor got in there and saw with his own eyes.
It was a big hospital. I don't know how many operating rooms they have. There were at least a dozen patients getting operated on that morning. After some confusion about scheduling, we were taken to the surgery preparation room. At that moment, she was like a car on an assembly line. While our surgeon was getting there, various people came and did various things to her – asked questions, stuck needles, started an IV, and explained anesthesia. At 8:00, she was rolled to the surgery room. The surgeon came in his surgery outfit and met us halfway there. He had a full smile in his face. I thought, “This guy likes his job.” When I tried to follow them, I was told to leave. There was off limit sign. I kissed her and said goodbye. She does not remember it because of the medication she was given. It was around 8:00. I won't see her till noon. I had always been with her since hearing the diagnosis. This was the first time we were separated for an extended period of time.
Family members of surgery patients are given a pager as well as a coupon for the cafeteria. I was not in the mood to eat or drink. I knew they were cutting her open and she was fighting for her life. How can I taste coffee? For purely logistical reasons, I went to the coffee shop and drank two big cups of orange juice. Now, I had to kill my time. Three and a half hours is a long time for a surgery. Since I was in a hospital complex, it was a good idea to look for good resources. I consulted the hospital directory and went to the cancer resource center. I told the receptionist that I would like to consult with one of the social workers and gave my contact information. It was around 9:00. The regular weekday was beginning at the hospital. In the family waiting room, people started getting paged one by one. When the surgery is done, the family member gets to see the surgeon to be briefed about the surgery. Family members were generally calm and appeared to be pleased about the surgeries and heading to the rooms of the patients. My turn never seemed to come. What happened? It's been already three hours. It shouldn't have taken a full three hours and a half. I was waiting past the scheduled surgery time and it was noon. By this time all the other people from morning surgery had gone. Patients for afternoon surgery were arriving. Then my growing concern transformed itself into confidence because at that moment, my pager rang. I jumped up and walked to the surgery front desk.
It was not about her surgery. A social worker sent from the cancer resource center had come to see me. We sat in a conference room and talked. The social worker said that she identified me by simply looking around the waiting area. I looked so worried. She told me that the time around surgery is the scariest time. She had materials describing resources such as classes, library, support groups. We discussed about questions I had. The fact she was talking to me for 40 minutes during this crucial time was the greatest gift. Years later, I am still sending donations to that cancer resource center. By the time I finished talking to the social worker, my wife was an hour overdue. I went to the front desk and asked them to check her status. After a few phone calls, I was told that the surgeon was on the way to see me. There was still a 30-minute wait until I saw him.
The surgeon looked tired. He told me that the cancer had spread. Then he started to draw a diagram of the abdomen and explained the location of the cancer and what it had looked like (a thin blue layer, the size of a quarter coin). He mentioned a few other suspicious objects he has seen. Since there was metastasis outside the uterus he said he was going to recommend chemotherapy, radiation therapy or a combination of them. That meant we had to go through another few months of treatment. Strangely I did not feel disappointment. It is not a matter of whether I liked it or not. We had to do what was necessary. Then he said a dozen lymph nodes he had inspected all appeared to be normal. I recognized its importance. Cancer cells travel to other organs through blood vessels and lymph nodes are the gate keepers. If the lymph nodes were unaffected, there was a good chance the cancer cells had not gone into her blood. Of course visual inspection is not sufficient. He was going to send lymph node samples to the lab to be examined. I asked him a few questions. I asked if the cancer had penetrated the uterus wall. He said no. I asked if the possible metastases were adjacent to uterus. He said yes. I asked if he had switched from robotic surgery to open surgery (as he had warned us he might have to). He said only robotic surgery was done, as planned. Although chemotherapy was a drawback, I began to feel this is not bad news.
The surgery receptionist came and told me that my wife was being taken to her room. I thanked the surgeon and headed to the room. When I got to the room, she was just arriving in on a gurney. To my surprise the nurse asked her if she could move to the bed. When she said she couldn't, they lifted her and moved her. Later I found out she was not bandaged. There were five small incisions in her belly. They were glued shut. She appeared to be alert and was able to talk normally. First thing she asked was, “Am I safe?” I told her yes. That was my honest feeling. Then she asked, “What did he say?” I summarized what he said. She did not quite understand why that was good news. I tried to explain it. But, mostly I felt it was good based on my gut feeling. And my gut feeling was based on the information I had. Because of the pain medication she was given, her mind slipped away occasionally. I don't remember much of that afternoon. At one point, the doctor showed up and talked to the patient.
Toward the evening, I got tired and did not know how to think. All questions were flying around. How would she recover from this big surgery? What would be the effect of instant menopause? What is chemotherapy? How long does this continue? Are we ever going to go back to normal life? I was suffering from these noises in my mind. My wife's hospital room had an extra bed where I was allowed to stay. I went back to our house briefly to fetch the necessary items for an overnight stay.
The house looked exactly as we had left it that morning. My cat was sitting at the top of the stairway as he had been when we left for the hospital. Everything was quiet. I sat down, ate dinner and read a while. I felt the noise in my head diminish. I knew how to think. The surgeon removed the cancer and everything suspicious. Lymph node invasion was unlikely. Suspicious objects are all limited to the adjacent area of the uterus. In case something is left, she is getting chemotherapy. This is a good plan. This is not denial, either. I went back to the hospital. In her incoherent state, my wife did not realize I had been away for a while. With constant beeping from the machines and frequent visits from nurses, we had a restless night. I longed for the morning to come, staring at the lights blinking on the top of the hospital building. I noticed that the blinking red light was synchronized with my heartbeat.
The blinking lights lost their strength when the morning came. It was a rainy day. The hospital room was on the ninth floor overlooking a busy highway. To many people, that was a typical weekday morning. I was looking at it in Cancerland. They brought her breakfast. I went to the cafeteria for my breakfast. As I walked out from the elevator, I realized that the building where she was admitted was a part of “Providence Cancer Center.” Cancer center? I still could not accept the idea.
During the morning my wife was able to get up. She first tried to go to the bathroom. That went well. We then walked out and shuffled a few hallways. As we walked we saw patients in their rooms. Some of them were reading, some were watching TV and some were asleep. I kept asking myself, “Does she have a cancer?” “Him, too?” By noon time, we had explored all hallways on that floor. My wife needed a doctor to examine her to release her from the hospital. We ended up waiting several hours until a physician’s assistant (PA) showed up. We had been told that because of the less invasive robotic surgery, she would be able to go home the day following surgery. But, I had not really believed it. When the PA said that she could go home, I hurried to the car so that I could take my wife home before the PA changed her mind. We arrived home around 4:00 p.m. and she managed to walk upstairs to bed. After she fell into much needed sleep, I went to do grocery shopping. I felt lucky, like I’d been to a battlefield and got home without major injury.
My wife's recovery was remarkable. We were told that she would be bed bound for a week to ten days. But, she was able to walk around the house immediately and within a week she managed to walk out of the door. I was happy again at this time. We were living quietly, concentrating on the recovery from surgery. I tried not to think about the future plans.
The Path Report
Ten days after surgery, we met with the doctor to discuss the next step. The organs taken out during surgery had been sent to the lab and a pathology report was sent back to the doctor. The report was written in a language we couldn't understand. But, our eyes were drawn to the line stating “Stage: 4B”. That was a great shock to my wife. We both knew that the area outside of the uterus was affected, which made it at least stage 3 cancer. But, why was it stage 4B? Stage 4 is the most advanced stage of cancer and 4B is worse than 4A. The doctor told us that the five-year survival rate for stage 4B endometrial cancer is around 16%. There is no wonder my wife was devastated.
I had a slightly different reaction. After listening to the doctor’s explanation and my attempt to decode the report, I thought that there is no new problem presented in this report. The affected area described in the report is what we already knew. The cancer was limited to the uterus and larger omentum which is a part the peritoneum surrounding the uterus. Since this part of the peritoneum is located outside of the pelvic bone, the cancer was considered to have spread outside of the pelvic area. As a result, this case was categorized as stage 4. If the cancer has gone to the peritoneum below the uterus, that would have been considered to be stage 3A and the five-year survival rate for that is 79%. I did not see these categories as being logical. I said to myself, this staging may have some academic meaning. But it does not have to have meaning for us. The path report supported all the good news I heard on the surgery day – the cancer was limited to the uterus and adjacent area, lymph nodes are clean. Stage 4 is not what I wanted hear, but it was just a matter of what someone calls the situation.
Nevertheless, the doctor recommended chemotherapy. We had no objection to it. Chemotherapy was scary. But, we felt that we would do whatever it takes to fight. Chemotherapy was scheduled to start in ten days.
Chemotherapy
What I knew about chemotherapy was very little. I knew people get sick from treatment and some people die from treatment. I had hoped we wouldn’t have to deal with it. However, with doctor’s explanation after surgery, chemotherapy was not optional. After that, I never questioned whether she should receive chemotherapy. Instead I tried to figure out what is it and how it is done. What I learned is that chemo is several cycles of large amounts of infused drugs. The cycle is anywhere between a few days to a few weeks depending on the nature of the drug. The drugs have been tested and used for decades. There are other drugs to treat side effects. It did not sound impossible. I believed my wife had much strength in her body. I had no doubt she could handle it.
Surgery was already in the past. We knew what chemotherapy was. I still had fear for some unexpected event. From the beginning of this journey, we had so many bad surprises. I am always worried about some new bad surprise. It continues to this date. I am not sure when I can be free from this fear.
Fortunately, we did not experience bad surprises during chemotherapy. Things happened as planned. My wife went through six rounds of three-week cycles. The patient is given steroids before the chemo drugs. They feel upbeat for the day. For the next several days, the chemo drug slowly appears and it is the hardest week. The patient has to struggle with slow recovery during the second week. During the third week, the patient can feel he/she is gaining strength. That is the good week. The book they gave us said the patient looses her hair in the second week and that is exactly what happened to my wife. There were problems we did not expect such as heavy constipation. But it was written somewhere in the book.
We soon established a routine. My task was to maintain the rhythms of the day, week and month. The repetition of similar activities became like calm breathing. I hoped that would bring us back a normal life. Food preparation was a part of the weekly routine and was not hard. I didn't have to do fancy cooking. The patient cannot taste meals during chemotherapy. I made sure to supply balanced nutrition to maintain and enhance the patient's strength and my own. We were lucky that my employer allowed flexible work hours during this time. That made a big difference.
Instead of more bad surprises, there were finally good surprises. At the clinic where we went, chemotherapy was done in a large shared room where patients sit in a big reclining chair and wait for several hours during the infusion. I haven't seen a more friendly and peaceful place than the “chemo room.” In this quiet room dozen of patients were receiving treatments. Everyone was working on their own individual treatment. But we were bound by a common cause – fighting against cancer. In cancer life, maintaining mental health is at least as important as drugs and surgery done to you. Since each patient is the expert on their own mental state and most were willing to share their experiences with others, the conversation in chemo room is healing. There are no hoarded trade secrets. Everyone cares for everyone else.
People in the chemo room were only known by their first names. We usually didn't discuss our professional or social status since they are not important. We talked to each other when we felt like doing so. There was no pressure to keep up conversation. Silence was one of the options. My employer allowed me to work from the chemo room on my laptop. On treatment days, we packed our lunch and spent most of the day in the chemo room. We took two chairs next to each other. My wife either read or slept during her infusion. From time to time we visited other patients or nurses working in the room. I sat and worked if I was not needed. With the nice quiet environment and nice wifi, I was able to work. I enjoyed the feeling of belonging to something and working toward a common goal.
For several months, all household responsibilities fell to my hands. Since I had the luxury of working from home this wasn’t too hard. I set a weekly meal plan and just executed it. Sometimes, it was very hard for my wife to eat anything. Still, I prepared her plate every meal time. I took her for a walk every day. Eighteen weeks of chemo went somewhat fast.
A month after the completion of chemotherapy, we went back to the clinic to start the cycle of radiation therapy. We were told that radiation is not as consuming as chemotherapy. It is probably true. But, it was a psychological burden. She needed to be alone in the room and there were no other colleagues. I was allowed in the room until the therapy started. The hardest thing for me was that I had to leave her alone in the room. The radiation they use for therapy is so dangerous, everyone has to stay away, leaving her in the room.
I don’t remember when her hair started growing back. I had no doubt her hair would grow back, but hair is so unimportant at the time. I longed for regular life. The five-year mark seemed to be so far away.
I tell myself to keep climbing without looking at the summit. ###
Photo credit my own.