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.