happiness is......family

It is a bit after 1 AM and I am still wide-awake. Thursday was supposed to be a chemo day, but in my mind, I had already decided my counts would be too low to be treated. The previous week, my platelet count was 31,000. To be treated the minimum counts should be an absolute neutrophil count of 1500, and a platelet count of 100,000. The absolute neutrophil count is a measure of the ability of the immune system to fight off infection. Low white cell counts in chemotherapy patients can be fatal. I have only been neutropenic (had a dangerously low white count) once in this treatment period. This has also been my lowest platelet count. Platelets help your blood clot, so the risk is that you could bleed to death without sufficient platelets. Normally you try to minimize the risk by not shaving with a straight edge razor, avoiding contact sports, using a soft toothbrush, not exercising, and generally being careful. You would also avoid medical procedures when possible. I thought it unlikely my platelet count would go from 31,000 to over 100,000 in a week’s time and I have to admit that part of me was hoping my counts would be too low to be treated. I have not had a single day in the last week when I did not feel sick from the chemo and spent one entire day returning anything that went past my lips headed toward my stomach. Starting the nausea cycle again was not very appealing.
I had a hard time getting up and getting ready to leave for Stanford Thursday morning. It did not help that Josh and I both slept through the alarms. We did not hear Amanda leave for the gym or for work. When I finally did get up, I was so short of breath from going upstairs to get ready, I think I scared Josh’s cat. She started following me around, rather than her normal routine of running in the opposite direction as soon as she sees me. I called the Cancer Center to let them know I was going to be late and we finally left the house ten minutes before we were supposed to be at the Infusion Center to have my blood drawn. One of the research docs was waiting for us because they needed more of my blood for their study. I was actually glad to see her because I was not clear on whether they needed blood every time I had chemo. I am still not clear but as long as they keep trying to figure out why my cancer is growing and how to stop it, they can have all the blood they need.
Things were backed up in the infusion center and the clinic by the time we arrived and tempers were growing short among those who had been waiting more than an hour. We waited so long to have my blood drawn that the breast cancer clinic was calling me at home to find out where I was. When we got downstairs for my 10:30 clinic appointment it was a little after 1 PM. One of the patients was trying to get the receptionist to reschedule her appointment for another day. She lived very close to Stanford and had an appointment somewhere else at 3 PM. The receptionist checked the queue and told this woman she would be the next patient called. I loved the woman’s response. She said – “Yes, but then I’ll be sitting in the exam room for another hour waiting for the doctor.” She was correct – obviously, this was not her first trip to the Cancer Center. On days like this, some things are predictable. Managers will be handing out snacks and apologies. Free parking passes will follow this. In addition, there would be a large tank of oxygen waiting for me in the exam room. There was a time when I waited so long for the doctor that I ran out of oxygen in my tank and did not know it. No one else noticed either. I fell asleep waiting and it was not until someone woke me up that we noticed my tank was empty. It was fortunate I was able to wake up. Now we always have a spare tank in the car and we know that we have to check the gauge at least hourly.
It sounds terrible, making sick people wait so long for their scheduled appointments, but it is never intentional and Stanford has always been willing to call in extra staff when it was necessary. The problem is that everyone wants to go to the best doctors and the best cancer center and have access to the latest research. It is an impossible situation because, as a care provider, you want to be the best and provide the best care, but the volume of patients grows geometrically each year while the number of physicians, clinic rooms, and staff does not. The Cancer Center met its ten year projected growth target in its third year and space has become a critical issue. When I was working as the triage nurse, my manager got someone from the bone marrow transplant service to help me catch up on my work for a few weeks. The problem was that I then had to give Margie my desk, my computer and my phone. I then had to go from office to office, looking for a spot where I could work. I had all my files on a memory stick and I would come in early looking for any open space to work.
I did not get any chemotherapy on Thursday. We decided to tackle my relentless nausea instead. Since it has gone on so long and I am losing weight in the process, we are going to ask the GI medicine team to see if they can find an obstruction or other problem that is causing the nausea. Dr. Carlson thinks the nausea may actually be a protective mechanism if there is something blocking my digestive tract. My body does not want to make the problem worse, so the nausea prevents me from eating which would make any obstruction worse. In 2005, I had an endoscopy after problems with nausea and vomiting and it was discovered that I had two ulcers caused by the chemotherapy. I started taking Protonix and the ulcers resolved in about 6 weeks. I do not remember the endoscopy itself, so I must have been out for the procedure. The other possibility we discussed is that there could be something wrong with my kidney. Whatever the problem turns out to be, the immediate thing to tackle was trying to clean out my system and get rid of the nausea. Josh immediately opted out of that procedure and called one of my nursing friends to come over and help Thursday evening.
I thought I was doing better, but then had a relapse early this morning. So I am back to being cautious about what I eat, eating slowly and trying to pick food that gives a reward – platelets, red blood cells, protein.
To pass the time I have been surfing the internet, visiting a lot of shopping sites. I have my mother’s birthday gift ready to mail and Haley’s birthday gift as well. I discovered a great web site for kids to learn about investing. It is called oneshare.com and allows you to buy one printed share of a stock, which is then matted and framed as a gift. There is a small plate where you can have a quotation or greeting engraved. It also has a book to teach kids about investing and saving. It is very nice. I chose a share of Dreamworks for Haley. Lisa is the family stock researcher so I thought it would be a good thing for Haley and her Mom to do together.
Yesterday I received an amazing gift from my cousins. They sent a card with a check and instructions that it is to be used for something that would “bring a smile to my face.” I have been overwhelmed with their thoughtfulness and generosity, which has led to a few crying jags. I am not someone who cries a lot, but it seems when I am sick the tears flow more often and unpredictably. Family is important to me. You have probably noticed this from the blog. Our family is a bit large with many cousins who grew up in close proximity in the New York-New Jersey metropolitan area. I have a lot of good memories of horse back riding in what is now a large shopping mall, swimming at the cabana club or at the lake, after school play time and trips to New York City for shows, shopping or ice skating in Rockefeller Center.
The thing that makes me happiest is being with family. Living in California for so many years, I want my children to get to know some of their East Coast cousins. So the thing that would bring me great joy, Pam & Jerry, Lydia & Elliot, Ron, Barry, Rhoda, Rona, Dennis & Ann and Bobby & Jerry would be to spend time with all of you and my children and Tina and Del this summer on the beach in Wrightsville NC. This means I need to get my butt in better shape for traveling. Josh is going to help me set up a Wii Fit in the family room so I can work on my balance and breathing and do some strength training. The Cancer Center offers free yoga classes and an exercise program through the YMCA. I took the exercise program just before I had this latest recurrence. I remember I felt so great at the end of the class. I was shocked when my CT scans showed my cancer was growing. I would like to feel that good again, so that I can travel and do some things outside of the house. THANK YOU, THANK YOU, THANK YOU. I am so looking forward to vacation time this summer.

Dear Mr. President . . .

Last night, I watched the President address Congress. I must admit, it was a nice sight after so many years, to see Nancy Pelosi, Democrat from my own state, Joe Biden, Democratic Vice President and President Obama in the center of my widescreen TV. Afterward, I sat down and wrote two letters to the President and one comment on his agenda. I checked out the new website, whitehouse.gov, requested a birthday greeting for my soon to be 89 year old mother, and invited the First Family to the University of Maryland Opera Studio production of Eugene Onegin. This morning I awoke worried that I write to the President so often, the Secret Service may show up at my doorstep to make sure I'm not a stalker. I also worried that my daughter would be upset at my inviting the President to her school's opera, but it's local and she was about the same age as his youngest daughter when she started to become interested in opera. And it's more likely than not that the President will never see my emails.
It's been a productive week here, considering the fact I haven't felt that great in more than a week. I've been working on bills, shopping on the internet, writing and reading and trying to get ready for Lent. Hard to believe today is Ash Wednesday. Josh and I planned out a nice dinner designed to boost my red blood cells -- filet mignon, steamed zucchini or broccoli and baked potato. And there is a bit of a contest connected to it. If my counts improve based on my diet, my cousin Pam has promised to gain weight!!! Pam has been a real blessing the past few months. She calls regularly and her calls always cheer me up. Today we were trying to come up with the names of all the siblings who came to the US with our parents. I always have to write it down and I always believed there were 6 brothers an 6 sisters. Now I'm not so sure. I definitely don't know the birth order except that Jenny and Dave are the oldest and Isaac is the youngest. If I post it here, maybe some of my cousins can help with the birth order. (By the way, our grandparents had the octo-mama beat by 1 child. There were 15 children born to the family and 12 came to the US. Isaac, the youngest went back to Europe with my grandfather and did not return until he was discovered in a refugee camp after WWII.)
Dave, Murray, Bob aka Adolph, Aaron, Isaac, Jenny, Laura, Hilda, Loretta aka Sarah, Frieda, Mary, Frank!!!We forgot Frank this morning - probably because Pam and I are both too young to have known him. But I do remember the two Franks who came after him. His son, who was in utero at the time of his death and his grandson who is one of the taller cousins and became known as Big Little Frank due to his (1)Height and (2) Age.
I'm trying to learn more about my family. I don't know why I waited over 50 years to make my curiosity known. I guess I'm afraid that my mother is never going to get around to labeling the photos in all her albums and I will never know who those folks are, dressed in black with wigs and long beards. Mom can't even remember all of their names. She does remember that of all the people who walked out of Russia in the 1920's with my grandfather, she is the only one left. I have a cousin I never met who is a neurosurgeon in New York. His mother Betty made the trip to Poland and eventually to the US. His name is Jeff Gutin. I know that he has twins and was on staff at UCSF for a time. I met his mother at a family wedding in 1980 in the Midwest and kept in touch with her by mail for many years. That is my mother's half of the family.
My father was one of 15 children. From what I could tell, I think his mother had diabetes, probably gestational at first. He used to have nightmares that his mother was buried alive because she took ill on a Friday and was buried before sundown. As a child, he had seen her sleep for long periods and then wake up and go one with her life. Life was hard back then. I'm not sure it's any easier now. Three children did not survive childhood. I don't know how long they lived or what their names were. Overall, I think I had a loving family. I have a lot of good memories of family. Often, my cousins were also my friends. Nutley, NJ was not a very friendly place in my youth. It was a "closed society" when I moved there in the third grade. Relationships had been forged in nursery school and it was tough to break in. With so many cousins, there was a precedent set for playing together and exchanging the clothes we had outgrown. My brother was close in age to Bernie and Ronnie Lewis. I remember stories of Bernie doing something wrong and my brother David getting the blame. At my brother's funeral, Ronnie talked about getting dating tips from David. My sister was close to several cousins - Beth, Nora, Rona and Paula. I am sandwiched between my cousins Lloyd and Pam and we all went to the same grammar, junior high and high school. Of course Nutley only has ONE junior high school and one high school. I can remember my surprise when I moved to California and discovered that a town could have as many as 5 high schools.
My mother was pregnant at the same time as some of my cousins because she married at 18 and my father was 8 years her senior. My oldest nephew is only 2 years younger than my younger sister and never called her Aunt. Getting to know my family may be a huge undertaking, but I want to know more of the stories and the family history.

So -- if you are related to me in any way, post to the blog. tell me some of your favorite family stories. What do you remember from your childhood? Funny stories are particularly appreciated.

Also -a question for those of you who might know. Yesterday I received a notice that my bio would be included in Who's Who in Health and Medicine. There is no charge for the bio to be included, but of course if you want the book, it is a mere $276. I've always thought this was a "fake" honor meant to sell books. Who else would buy a $276 book of bios beside your parents? I've always ignored these things when they came in the mail. I suppose they put your bio in the book anyway, but I may be wrong. Does anyone know what the story is with this organization? My kids were in the high school edition of the book based on their GPA and service to their school. I can't remember if I purchased the books then or not. I do remember being less cynical about the books back then.

The End of a Career?

How do you feel at the end of a career?
With the economy in bad shape, many people who are not ill are facing the end of their career. I recently experienced the death of a colleague from breast cancer. Anna was very angry about the way the hospital treated her at the end of her life. I understood completely. Anna was much better at expressing her anger than I am, but I can learn. I remember her yelling at me that she had given her best to the hospital every day. Her reward was to have her benefits terminated the night before her mastectomy. Part of this was her own fault, in that she did not push the benefits office hard enough to tell her the amount she would have to pay to COBRA her benefits. On the other hand, why must it be like pulling teeth without anesthesia to get information from your own benefits office? It should be very straightforward. If you are not able to work, and you pay the premium of $2,000 per year (an arbitrary number), you are entitled to continue all of your benefits. This is a little less than $200 per month. After a year on social security disability benefits, you become eligible for Medicare. You should not become another statistic measuring the number of uninsured. You should not have to think about whether you can afford your medications. You should not have to go to the emergency room for your daily health care. This only compounds an already overburdened system of care. The last time I went to the emergency room, I waited five and a half hours before I was seen by a physician. The care was spotty at best. Miscommunication was rampant. I was coughing and had pain in my chest. This should have been an emergent situation. In fact, I had fractured ribs and a collapsed lung. I was not getting enough oxygen but was not put on supplemental oxygen immediately. It was not until the CT scan showed the collapsed lung that the ED staff became concerned. I was admitted to the hospital for 4 days during which time I began chemotherapy.
My benefits ended on February 14, 2009. Happy Valentine’s Day. We love you; now stay well and out of the hospital. Yesterday I felt sick all day, but I didn’t want to go to the clinic. If each week of chemo costs over $8,000, how much would it cost to be sick? Can I afford it? It is certainly cheaper to stay home and take anti-emetics, Tums, and other medications than it is to go see the doctor. If I had insurance, I could afford the $25 co-pay for my oncologist. Since my benefits terminated, I have no way of knowing how much an office visit will cost. It is not just the co-pay; it is the entire amount. Two days of hydration and antiemetics with a unit of transfused blood cost in excess of $30,000.
Let me go back and tell you about my friend Anna. She was a nursing assistant on the oncology/hematology floor. She rarely took a break and we had to nag her to eat. She would go out of her way to make patients feel comfortable. Warm baths, warm blankets and towels to dry off were the natural course of events. Then there was the moisturizing lotion, the baby powder, and anything else that could add to your comfort. I remember her going up to the gift shop for warm, fuzzy socks that nor only kept my feet warm, but were soft and feminine (if socks can truly be considered feminine) If you wanted something the hospital did not have, she might go to the store after work and get it. I once watched this woman, who was barely 5 feet tall; carry a tree to a co-worker’s housewarming party. Patients would ask for Anna specifically. I am always cold and Anna made sure I was warm during and after my shower each day. She was so thoughtful. Was the hospital thoughtful when it came to Anna’s care? I know that her medical team cared a great deal about her. I spoke to her surgeon the night before her mastectomy, when we were struggling to get the surgery covered. He was prepared to do the surgery whether he was paid for his time and talents or not. We tried to reassure Anna that she would have her surgery at the scheduled time. She worried that she would arrive at the hospital at 5 AM only to be turned away. “They use me up and then they throw me away,” she told me. I knew just what she meant. I also feel I have much I can still offer the hospital. I am a great teacher, I listen well, and I mentor leadership in others, so they will in turn mentor other leaders. This is how a great organization grows. Recognize the talents of your staff encourage them, be grateful for their willingness to share their time and talents, and allow them to mentor others. Stanford is a magnet hospital. It is easy to see why. We have a magnetic staff that encourages greatness in all of us. Ideas are respected, nurtured and shared. I hope that Anna saw that before she died. We valued the contribution to patient care that she made. We recognized its importance.
Anna used to tease me by introducing me to her family and friends as her “boss.” I never felt we had that type of relationship. Yes, I was the assistant manager on her unit. We all felt that we were a cohesive unit, available to provide the best cancer care possible, by working together. It was not a tiered system. It was an unbroken circle of care, with the patient and their family at the center. This is the model of care we chose for our patient population. Cancer is an overwhelming disease. It requires an army of caregivers to keep patients symptom free and happy.
This is a story of mixed blessings. Anna had her surgery and lived for a few more months. I hope she knew how much she was appreciated by her coworkers and by the patients she served. Patients and family members still ask about her. It is difficult to make the transition from caregiver to patient; difficult for the patient and difficult for those who were your patients. In the end, I hope Anna did not believe the hospital had “thrown her away.” I continue to mourn her absence. Stanford is made up of so many people like Anna, who give as much as they can to make the patient’s experience as tolerable as possible. As a patient, I feel blessed to have these colleagues care for me. As an employee, I am honored to work with them. I feel fortunate to receive my care at Stanford and will feel even more fortunate if their football team continues to hand over the axe to Cal. [Sorry, the California Golden Bear Rally Committee member in me could not resist that ending.]