A Scary Day Becomes Less So

Today started out as a scary day. I had to get Josh up early to take a standardized exam at National University. It is part of his writing requirement for graduation at Harvard and the test started at 8 AM. Josh is not a morning person and it can be quite an ordeal to wake him and have him actually stay awake and get on with the day. I feel like we have reverted to high school days when I used a water pistol after the third attempt to get him up for school. I think he may still hold the record at Bellarmine (his high school) for number of days tardy. Shortly after Josh left and Amanda went to work, I started to have trouble breathing. It has been a long time since I could hear the fluid on my lungs with every breath. After about an hour of wheezing, the nausea kicked in and I realized that I am only two days out from chemotherapy and the blood transfusion. That explained my symptoms but did not help get rid of them. I occupied myself with the computer, reading blogs from some other cancer survivors. It helps to read what others are going through and how they are coping. There was one post I could not resist answering. A woman with metastatic breast cancer had her chemotherapy changed to a drug named Doxil. It is a new drug but has been around for some time as a treatment for ovarian cancer. It has some serious side effects, but I never came across an instruction such as the one she received from her doctor. No sex while she was on this treatment!!! I have spent many years lecturing nurses and patients on the sexual side effects of cancer treatment. Most of the lecture is devoted to how to be intimate despite the problems cancer causes in a relationship. I have never read anything in the literature about forbidding sex while on a specific drug. I checked the Ortho-Biotech website. Otho-Biotech is the distributor for Doxil. I also checked www.doxil.com. There is a black box warning about cardiac toxicity and the fact that the drug can lead to congestive heart failure, but I did not see anything prohibiting sexual activity while on Doxil. I emailed the woman with this information and told her to go back to the oncologist and demand an explanation for the ban on sex. Usually I have to beg doctors to talk to patients about sexual side effects of cancer. This is one time I wish the oncologist had said nothing. The poor woman was already grieving the loss of an important part of her relationship with her husband.

I had a great email from my cousin Dennis this week. I did not read email for a couple of days due to chemo anxiety on Wednesday and 11 hours at the cancer center on Thursday. This was great news about Anne‘s appointment to the Board of Directors of Prevent Child Abuse North Caroline. When I was in North Carolina for the cousins club last summer, Anne told me a bit about her work as a child advocate for abused or neglected children. It is such important work. I remember a little girl I found hiding under the sink in her mother’s room in the hospital. She did not want to come out but I finally coaxed her to come with me to the social worker’s office. I borrowed some crayons and asked her to draw me a picture of her family. I had no idea why she was hiding under the sink but I remembered hearing some shouting going on inside the mother’s room earlier that day. It turned out the mother was taking out her frustration at having leukemia on the child by abusing her verbally and then physically. We had to call child protective services to have the child removed from her mother’s custody. What a traumatic event that was for everyone involved. This event was many years ago and I can still see that child’s frightened face as clearly as if it was happening now. I am so glad that Anne is getting some recognition for the work she has been doing. If you are interested in reading the newspaper announcement and seeing a photo of my beautiful cousin (inner and outer beauty) here is the link: http://www.luminanews.com/article.asp?aid=3878&iid=156&sud=30

I took some Lasix when Josh got home and was able to get rid of some of the fluid that was making it hard for me to breathe. It is such a scary feeling when you cannot control what is going on in your body. I am counting the days until we leave for Baltimore to hear Gabby perform in the opera and I do not want anything to get in the way of that trip. I also took the last Emend of the three-day regimen for delayed nausea. I was able to sleep sitting up for a couple of hours and woke to beautiful sunshine with a slight breeze in the backyard. I love this house and all the fruit trees in the back and roses in the front. I hope that spring is finally here to stay.

Josh and I did some bowling on the Wii today. He won the first game and I beat him the second time. He then went on to play tennis and baseball while I settled in for a nap. My stamina is just not there today. Maybe tomorrow I’ll be able to do some exercises on the Wii Fit.

The photos are of my great-nephew Sawyer, who had his first birthday this week and of my great-niece Haley, who had her 8th birthday this week. Today is my mother's birthday. She is 88 today. There is much to celebrate.

What does “unresponsive” mean?
It has been a while since I sat down to write for the blog. I have been writing though. I had an article accepted by Oncology Nursing News for their column The Human Touch. The editor contacted me a while back about writing a story on a patient who touched me personally and affected the way I practiced oncology nursing. I have had so many patients touch my life it is hard to choose just one. I started to write about one family I dealt with whose story I tell to nurses who take my End of Life Nursing Education Curriculum. It was the second time I tried talking to someone who had stopped breathing and had no heartbeat. This man had end stage cancer and was struggling all day to stay alive until his daughter arrived from another state. We kept telling him what time it was and when his daughter’s plane was supposed to arrive. He did make it until she arrived at the hospital but stopped breathing shortly after her arrival. Her brother was in the room all day watching their father’s steady decline. He looked relieved now that the struggle was over. However, the daughter immediately became hysterical. Clearly, she was not ready to let her father go.
When my own father was dying in a hospice in Florida, many family members gathered together in his room, sleeping on a rollaway bed or in a nearby hotel room. I was there with my children who were in grammar school at the time, my sister, my brother, my mother, two nieces and a nephew. Family members who lived in Florida also came to visit but this was the core group who stayed at the hospice. My father was not talking very much at the time but he was able to say the things he felt were important. He helped write his eulogy to make sure his family knew that he loved my mother and that he was not a very good husband. He asked my daughter to sing for him, choosing songs from Fiddler on the Roof and other shows. This was quality time for our family. We took turns eating away from the hospital with half the group going out for meals at a time. Dad was never alone, but we did not prepare for the possibility that he might die when half of us were gone for a meal. When my father stopped breathing, the group that was out to dinner happened to be the half that included my brother. Years earlier, when my younger sister was dying following a bone marrow transplant, David had gone outside to smoke when Terri’s heart stopped. He was upset with himself for years afterward. I am not sure if he was more upset by the fact that he was not in the room when she died or the fact that he was not there because he needed a cigarette. When I saw that my father was not breathing, I got into bed next to him and spoke directly into his ear. I told him that David was not back from dinner and reminded him how upset David was when Terri died while he was outside smoking. I told my father that if he could just wait until David came back from dinner, I would have my daughter sing his favorite song from Fiddler on the Roof. Everyone in the room could hear what I was saying. Almost as soon as I stopped talking, my father took an audible breath and then resumed his breathing pattern of the past few hours, slow, shallow breaths. I looked at my twelve year old daughter and said simply, “You’re on.” She climbed up on the bed next to her Grandpa and started to sing “Sunrise, Sunset.”
My father did not seem to notice when David and the others came back from dinner. We all took turns saying good-bye as we gathered around the bed. After a while, Dad’s eyes opened and he appeared to be looking at someone or something across the room from his bed. He sat up and his eyes tracked movement toward the upper right corner of the room. Then he sighed and sank bank into the pillows. He was gone. I like to think that Terri or some other angel came to get him when the time was right, when we were all ready to let him go. The movement he was tracking was someone showing him the way to leave his earthly body. I can feel his presence now as I am typing this memory. I know he lives on in each of us whose life he touched.
My experience with my father’s death gave me the inspiration and the courage to try it again with a man who was my patient but really a stranger to me. Going back to the story of my patient and his children, I went to the head of the bed and got as close to this man as I could. I spoke directly into his ear. I told him his daughter was not ready for him to leave but I thought I could get her ready if he would give me about ten minutes. I told him I would take her outside the room and talk to her and then we would be back. To everyone’s great surprise, this man started breathing again. I looked at his son to be sure he was okay with what had just happened. I had not asked anyone’s permission to say what I did. I just followed my instincts. The son looked stunned but he was not upset with me. I took the man’s daughter into the hallway and quickly explained to her how difficult it was for her father to continue to live in a body that was failing him. I told her hard it was for him to breathe, even with the 100% oxygen we were giving him by a mask that made him feel like he was suffocating. I let her know how important it was for him to see her before he died, how he had waited all day for her to arrive and how we kept telling him what time it was and what time her flight would arrive. She began to sob and I held her in my arms. When I felt her crying slow down, I asked her what she wanted for her father. I told her it would help her father to know that she would be okay after his death and that she was able to let him go. As we turned to walk back into her father’s hospital room, I noticed that my uniform top was soaking wet. I also noticed that there was a calming presence about the daughter as she went to speak to her father for the last time. The room was full of this calming presence and of the love of a family as the man’s son and daughter sat on either side of him in his hospital bed. The man’s daughter shared her love for her father and told him how much she would miss him. She told him she would be okay after his death and that she and her brother would help each other get through the pain of losing him. She told him she was ready to let him go, that she hoped he would find peace and that she and her brother would always love him. I saw a tear run down her father’s face and I watched my patient take his last breath. I noted the time, but waited until the family was ready to let go of their father’s hands before performing my nursing tasks in verifying a lack of heart beat and blood pressure.
Since that patient’s death, I have not been hesitant to talk to patients who are unresponsive or who have actually stopped breathing. I tell the story of my father’s death and the death of this patient to nurses who take classes on care of the dying patient. I encourage them to talk to patients who are dying or who are comatose. I warn them never to say anything in the presence of an unresponsive patient that they do not want that patient to hear. Patients awake from coma and tell me everything I said or did in the room while they were supposedly unresponsive. But that is another story.
The story I share here is not the one I submitted to Oncology Nursing News. It was so hard to choose one patient from my years in oncology nursing. The patient I settled on is one who is still in my life through my ongoing friendship with his mother. Jason was a professional surfer who came to Stanford for treatment after his physician in Hawaii failed to diagnose his cancer. I am now working on editing the story down to 800 words!! It sounds like a lot of words but it really is difficult to convey our relationship in that many words. My first draft is 1550 words and the editor has promised to give me a few hints on where to make cuts.