Phase II trial of the oral PARP inhibitor olaparib in BRCA-deficient advanced breast cancer. - ASCO

Phase II trial of the oral PARP inhibitor olaparib in BRCA-deficient advanced breast cancer. - ASCO

Does anyone have any information on this clinical trial?  I have already had carbo/platinum but now want to see if adding a PARP inhibitor will buy me some more time? Email me at this blog or at www.debraocn@sbcglobal.net  I have seen a lot of information posted showing 12-40% overall improvement in survival.

Debra

Thanks To My Cousins

To My Dear Cousins,

I couldn't let another day go by without letting you know how much I loved being with all of you in North Carolina.  Cousins Club has come to mean a lot to me.  I am thankful that you welcomed Gabrielle into the group as she now looks forward to it every summer. When I got back home I found out that my chemotherapy was no longer working.  I tried another drug which didn't work either and then another type of IV chemotherapy which my body could not tolerate.  So as far as treatment this is the end of the road for me. I thanked  the researcher who gave me an extra 11 months and sent him back to his lab to cure some more mice for me. Now I am home with hospice care and Gabrielle and Josh are taking care of me.  The first few days I don't remember, I guess I was comatose.  There has been a steady stream of visitors from everywhere.  Lisa brought Hayden to meet his Auntie Debbe because I couldn't go to Madison, though if it were humanly possible I would have gotten on the plane.  I have been looking at lots of pictures, some from before I was born.  Some of these people I know are related, but I am not sure who they are.  One woman looks like Pammy so I am assuming it is Aunt Loretta.  The others in the photos must be brothers and sisters, but they are dressed "gangster style."  Looking at these photos reminds me of the good old days.

Being with family has brought me a lot of happiness.

The Blog is Back !!

It has been quite some time since my last blog entry and I want to reassure you all that I am still alive and kicking. It took me a long time to recover from the trip to San Antonio for the Oncology Nursing Society Congress (see last blog entry). I spent the last couple of days of that trip in bed in my hotel with my sister Tina and my son Josh taking care of me. I flew home and had chemo the next day. That did not help with the recovery process. I was getting worried about being able to attend Josh’s graduation in Boston. After a week of resting in bed, I realized I was having internal bleeding and we headed off to the emergency room. It was going to take a couple of days to get an endoscopy and colonoscopy scheduled, so I opted to go home until there was an opening for me in the hospital’s schedule. By that time I needed a blood transfusion, so had that done as an outpatient and then was “scoped.” I had two bleeding ulcers, probably caused by the chemotherapy and the fact that my health insurance company (Anthem Blue Cross) refused to refill my prescription for Protonix. Instead of paying for my monthly prescription, the insurance company ended up paying thousands of dollars for an emergency room visit, blood transfusion, endoscopy and colonoscopy. After all of that, the treatment for the bleeding ulcer was a prescription for Protonix. I wonder which Blue Cross employee got a bonus for denying authorization to renew my original Protonix prescription.

After making sure my red blood cell counts were staying within normal range, I was given approval to fly to Boston for the graduation. I was so determined to be at that graduation, I might have gone even without the approval. Josh worked as an EMT while attending school, so I was confident he knew the best hospitals in Boston to go to in case of emergency. Graduation was June 4th but we had to be in Boston early for some of the other ceremonies. On Monday, Josh was one of 14 members of his class to be inducted into the honor society. He received a special tassel for his cap (red and gold rather than black) and an honor cord for his gown (see photos). I thought this would make it easier to find him in the entrance procession into Harvard Yard. This was an excellent theory that did not prove true in reality.

The night before graduation, we met cousins Rona and Amy, and Tina and Del for dinner on the waterfront. I remembered a restaurant from my trip to Boston for an oncology conference as having excellent service and food as well as a great view of boats on the water. The memory turned out to be better than reality this time. I should have let Rona pick the restaurant since she has lived in the Boston area for so long. Tina, Josh and I had lobster and I know I enjoyed mine. Spending time with family was great and I am glad Josh finally was able to meet some of his East Coast cousins.

We had to get up at 4 AM on graduation day, check out of our hotel and drive into Cambridge. We were able to find a parking place on the street because I brought my handicapped parking placard with me from California. We then scouted out a place for Tina and Del to park and headed for the gates. There was a problem with getting our tickets for the handicapped section. The tickets they mailed to us had to be exchanged for a different set of tickets, so we had to meet someone from the Harvard Disabilities Office at 6 AM in front of a statue in Harvard Yard. Tina, Del and I had to find this on our own because Josh was having breakfast with his class and had to be on line for the procession at 7 AM. You can see from the photo that we were freezing. Del was nice enough to get us some hot tea so we could warm our hands on the cup! The ceremony was impressive with what seemed like an endless line of students marching into Harvard Yard from the streets surrounding the campus. Students either sat with their school or with the residence house where they lived. Each of these had a banner. You can get some idea of this from the photo. We knew that the Extension School was behind the Divinity School. Those students were waving something pink, so I had an idea of where to look for Josh. There were nine honorary doctorates awarded, but the only names I recognized were Steven Chu from the Department of Energy, Winston Marsalis and Joan Didion.

This ceremony ended at 11:50 AM, giving us ten minutes to get to the building where the Extension School was to award individual diplomas. We raced over there and found a lovely buffet set up. Just as I was about to take my first bite of lunch, an official from the school found me and said it was time for me to be seated in the handicapped section. Tina was pushing my wheelchair in the door and, at the same time, the usher was grabbing for my food. No food was permitted in the auditorium, so I ate as much as I could before the rest was taken away. Tina and I had great seats – on the stage and facing the podium where the Dean handed each graduate their diploma. Josh had the second highest GPA in his class and received the Phelps Prize for that.

When this ceremony ended, we were supposed to head back to Harvard Yard to hear the commencement address by Dr. Steven Chu. We were all hungry and exhausted, having been out late the previous night and getting up at 4 AM. Josh’s friend informed us that we could listen to the commencement address online if we were interested and suggested we get something to eat instead. We headed for a nearby hotel that was dispensing champagne to graduates and their families and had a nice meal together. We then returned our rental car and drove to New Jersey with Tina and Del. On the way to NJ, Josh was opening the folders he received with his diploma and various awards. Much to his surprise, we found that the Phelps Prize came with a check as well as a nice certificate and bronze medal.

We had a nice visit with Tina and Del. Our cousin Pam came out from New York to visit, Fern and Sandy drove up from south Jersey, and we were able to spend time visiting my mother as well. I was worried about seeing Sandy since she is too ill to drive and so am I. I appreciated so many relatives and friends coming to see me in NJ. I wish we had more time to visit but I needed one day to recover from every day we did something. Josh had a chance to go to New York with Bobby and then it was back to California for more chemotherapy.

There was another long recovery period and I needed another blood transfusion when I got home. I was feeling pretty good and trying to walk more. Gabby arrived from Maryland by the time Josh and I got home and she took over the Mommy caregiving duties to give Josh some time off during the summer.

The next trip I had planned was the annual cousins club reunion in Wilmington, North Carolina. I was really looking forward to that. Josh was going to attend for the first time and I was excited about him meeting some more of his East Coast cousins. A couple of days before we were to leave, I started feeling tired and short of breath. I felt like I needed another blood transfusion but when we checked my blood counts, I was not anemic. My oncologist was worried about a pulmonary embolism and told us if I flew with a PE, the result could be fatal. I needed to have a special CT scan to rule out the possibility of a PE, but because I am allergic to the contrast dye, the test could not be performed until I completed a 13 hour de-sensitization to the contrast dye. This meant we would probably miss our flight from San Jose to Atlanta. I was admitted to the hospital and started taking steroids. My blood counts were re-checked and we found out that my platelet (part of the blood that contributes to clotting) count was dangerously low. At 1 AM I was given a platelet transfusion and 40 minutes after it completed, I broke out in hives everywhere. I was given a lot of Benadryl to minimize this reaction and then finally had my CT scan which showed no sign of a PE. Unfortunately, it also showed that the amount of cancer in my lungs had increased, despite being on chemotherapy. When we got back from North Carolina, we would have to deal with the fact that the chemotherapy was no longer working.

I think that is enough for today. Next time I’ll tell you about the trip to see family in North Carolina and what happened when we returned to California. I will do my best to keep this blog up to date. Josh has agreed to help me by writing some posts on days when I am not feeling up to it.

Thanks to everyone who called, wrote, emailed or otherwise checked up on me. I am sorry it has taken so long to get back to the blog. I have been thinking about writing for weeks, but have spent so much time going back and forth to Stanford for tests, transfusions and treatment that it has exhausted me.

San Antonio April 30

Arrived in San Antonio

Josh and I arrived in San Antonio at 7:15 PM Saturday night. The airport appeared to be abandoned, as if they had already rolled up the sidewalks and gone to bed. We retrieved our luggage and went looking for a taxicab. To get out of the terminal, there was no handicapped doorway and the area in front of the exit door was uphill. I tried to wheel myself up and then through the door Josh had left open as he pushed the luggage cart through the door. It did not work. I started to slide backward and Josh was not able to rescue me quickly enough. Fortunately, I rolled into sympathetic arms and a nice young woman pushed me out the door and over to the taxicab line. Josh was already there trying to get us a taxi van. The attendant went way overboard and rounded up a handicapped van that could secure my wheelchair in the back with chains. This left the back seat for luggage and Josh sat up front with the driver. It was fiesta time in San Antonio and many city streets were blocked off by police cars for the big parade with mariachi bands and dancers. Each time the taxi driver slowed down at an intersection and then accelerated through it, I thought I was afflicted with whiplash. The wheelchair moved forward slightly and then the chains jerked it backward forcefully. What a ride! We finally made it to our hotel, exhausted and sore. We checked in and I fell asleep for the next day and a half. Josh only slept for a day and explored the area around the hotel while I continued to sleep. He found a small market, the McDonalds and the local internet service. The hotel charges $10/day for internet service while the San Antonio internet is $10/week. He signed up for the San Antonio public internet service, but when we were upgraded to a river view room, we found the internet did not work on that side of the hotel. The upgraded room also did not have a handicapped accessible bathroom, so we opted to go back to our original room before the thousands of oncology nurses arrived for the conference.

On Tuesday night, Tina arrived and on Wednesday morning, we left early for the convention center. I picked up my motorized scooter chair at the convention center Tuesday evening with Josh. We went down to the Riverwalk earlier in the day with my wheelchair and discovered the Riverwalk is not very handicapped friendly. Some of the paving is ornamental but painful for those in wheelchairs. Restaurants are not accessible to the handicapped because you can’t get in the door unless you climb stairs. Josh and I finally found a place to eat on Tuesday. It was not our first or second choice restaurant but by then we were hungry and thirsty and Josh had worked very hard pushing me in the wheelchair. At 4 PM, we picked up the electric scooter chair and Josh pushed the empty wheelchair back to the hotel. I have the scooter until noon on Sunday, about 24 hours before we leave for home.

Wednesday morning Tina and I headed to the convention center in my scooter chair. There is construction going on at the convention center so it was rather inconvenient to go in the temporary entrance, walk down a corridor, turn left, walk down another corridor and then exit the convention center. We then walked outside in a westerly direction until we came upon another door that we entered which led to the main lobby. We went to the resource area to pick up my materials for my SIG (special interest group) meeting on Survivorship, Quality of Life and Rehabilitation on Thursday. I also went to the Speakers Prep Room and worked on my slides, adding information I received since the slides were due on April 21. We were getting loaded down, having picked up our tote bags with convention materials and my syllabus for the entire Congress. We left for our hotel at 2:30 PM and arrived at the room about 3:00. Josh was getting ready to do his interview for his school project and the maids wanted to clean the room. We asked the maids to give us an hour so Josh could finish the interview and Tina and I crashed on the beds until 5 PM. The maids then came back and Tina and I got ready to go to my dinner meeting. I called ahead to be sure Tina could get in as my caregiver and was told by IMER that it would not be a problem. In the meantime, Josh and Tina decided to drop me off at the dinner meeting and go out to dinner, and then come back at 8:30 to pick me up. I was close to the beginning of the line when they left, but to my surprise they stopped letting people in to the meeting just before they got to me. Several people had cut in line in front of me and I did not complain until I found out that I was the first person they were not going to let into the dinner meeting despite my having pre-registered for this educational offering. I pointed out that several of the women in front of me had cut in line and that my caregiver had just gone to dinner, leaving me to attend the dinner meeting until 8:30PM. The woman behind me in line verified that several people had cut in line and that I needed to attend the meeting because I was in a wheelchair. I was grateful for the help and I was let into the meeting. Getting to a seat was more difficult. I had to park my scooter and haul my oxygen and my bag over to a table as there was no way my electric chair would fit between the tables to get to an available seat. Of course, while I was parking the scooter, someone took the seat the waiter had found for me. I talked to him and he found me another seat. Relieved, I sat down, hoping to learn a new treatment targeted therapy for metastatic breast cancer. I was disappointed as the physician started to speak about a 1998 study comparing ACT (adriamycin, cytoxan plus taxol) with ACT + herceptin, targeted to her2neu. This was not new, as the study was released 11 years ago and led to FDA approval of herceptin, now a big source of revenue for Genentech Bio-oncology. I was at The March in Washington, DC with some Genentech employees who had helped us work on developing The Cancer Survival Toolbox when they learned of the FDA approval of herceptin. We helped them celebrate the rest of that night. The nurses who spoke had good information on symptom management of side effects of targeted therapies, but there was not much new information on targeted therapies for metastatic breast cancer. I was very disappointed. I did not receive a continuing education credit for this meeting because they ran out of program materials before I got into the dinner meeting. I did receive a memory stick with the class presentations on it, so I have all the slides that were shown, and hopefully, some of the narrative that went with the slides.

Thursday morning was the official start of the 34th Annual Oncology Nursing Society Congress. Tina and I left the hotel at 7:40 AM to get to the convention center by 8 AM, have breakfast, pick up the rest of my materials for my 11:15 AM presentation, and head for the opening ceremonies at 9 AM. I was supposed to present Marcia Grant with an award during our SIG meeting, but when I went to pick it up, it was not with the other materials for the SIG meeting. We followed the crowds of people heading for opening ceremonies, but their lines ended at a mariachi band serenading the nurses as they went down two long escalators. My scooter would not fit on the escalator steps so we turned around and looked for an elevator. After finding the elevator, we headed downstairs and sat on the right side of the huge hall for opening ceremonies. The keynote was entitled “Why I Wore Lipstick to my mastectomy” presented by Geralyn Lucas, an editorial producer for 20/20 who wrote a book of the same title, which was turned into an Emmy nominated movie. It was a good presentation and I enjoyed it. Tina cried through parts of it. After opening ceremonies we headed for the elevator, only to find a large crowd waiting for the one elevator to the second floor. I ended up getting stuck in the elevator because we tried to fit too many people in the elevator. I pushed the scooter as far forward as it would go and it got stuck underneath the railing at the back of the elevator. We could not get out before the door closed and headed back downstairs. On the ground floor people were surprised that I did not want to get out of the elevator. Tina and I were the only ones on the elevator. So Tina explained our dilemma and the nurses helped get my scooter out from underneath the railing and turned it around to face the front of the elevator. By this time we were on the second floor again and everyone allowed me to get out first which barely gave me enough time to prepare the room for my SIG meeting.

Tina and I went to another lecture, then visited the exhibit hall before we started looking for a place to have lunch. I must tell you that I was absolutely stunned to see three people from Stanford F Ground Staff walk into the Survivorship SIG meeting while I was talking from my slides. Albert, Rosella and Mary were there. Albert is supposed to be picking Josh and me up from the airport Monday evening so I really did not expect to see him in San Antonio today. More about that, and other Congress news tomorrow. It is nearly 1 AM and I must sleep. The OCN Recognition Breakfast is at 6 AM but I do not think I can get up for it. Tina will not last all day if we leave that early tomorrow and I will run out of batteries for my oxygen before it is time for me to moderate the podium session if I start the day at 5:30 AM. So Goodnight to you all. Tune in tomorrow.

Thursday, April 17, 2009

I made it to Maryland. Not that I was going to let anything stop me from getting here. We had three suitcases, one devoted to Josh’s schoolbooks, the wheelchair, the portable oxygen concentrator, Josh’s backpack, my purse and my computer bag. San Jose Airport is under construction so Joyce had to let us off some distance from the terminal itself. We were just trying to figure out how to get me in the wheelchair and the cart with all the luggage across the street to the terminal when my angel sent a very nice man over who volunteered to push the luggage cart to curbside check in for us. Once we got there, he whispered something to the person working check in and disappeared. At curbside, they did not weigh the bags, so we were not charged for the fact that the school bag was over 40 pounds. After Josh took time for a last smoke, we headed for security. No lines but we still had to walk down a hallway only to turn into the marked off area and walk back through the same hallway to the security desk. The person ahead of us had a typo on her boarding pass and two security people were trying to decide whether to let her through. She was trying to explain that the computer did not allow her to correct the typo once it was entered but that fact did not help the security folks engage their common sense gene and they remained confused as to what to do about this discrepancy between the boarding pass and the name on the woman’s identification. Eventually, one of them turned her attention to our boarding passes and we joined the line of people waiting to be strip searched before heading for the boarding gates. Off with the coat, the sweater, the shoes, and Josh’s belt. Out come the two laptops and the plastic bag full of prescription medications. Then I get in the special line to be patted down in the wheelchair and to have the oxygen concentrator tested to be sure it is not a bomb in disguise. Josh warns me about saying the word “bomb” in an airport. Finally, we are cleared for takeoff to our gate and we begin getting dressed again and repacking the computer bags. We stop to get lunch that we can take on board and then it is time to go. San Jose is one of the few major airports where you still have to climb stairs to board the aircraft. Our Continental flight is boarding from both the front and the rear of the aircraft. We are seated in the back half of the plane so we head for the rear stairs. I climb the stairs while a Continental agent holds the oxygen for me. When I get to my seat, I am very short of breath. This is surprising to me because there were fewer stairs than I have at home. It takes me several minutes to catch my breath and I am fine for the rest of this flight to Houston, where we have to change planes. Continental is one of the few airlines that still serve meals. We did not know this before boarding and have already consumed our sandwiches before the meal cart comes around with hot chicken sandwiches, salad and a tiny chocolate bar for dessert. We will be served a similar meal on our Houston to Baltimore flight, with a ham sandwich replacing the chicken sandwich. Our flight lands early in Houston and we have plenty of time to make our connection. The gate area is crowded and there are several people in wheelchairs waiting to preboard. I am not sure whether it is because of the oxygen or the fact that I have my own wheelchair, but we are moved to the front of the line and board the aircraft first. On this flight, there is no one else in our row, so Josh can sit on the aisle and have the middle seat empty. The movie is Marley and Me so I decide to buy headphones for $1. I raise the shade and look out the window to see very dark, low clouds. A storm is moving in. I say out loud, “Nothing is going to stop me from seeing this opera,” and lower the shade. A few minutes later, our plane backs out from the gate and we are taking off. Apparently, we were one of the last flights to leave Houston that night as the storm moved in and stopped outbound flights for several hours. Amanda’s friends who were flying from Houston to San Jose had their flight cancelled and faced the possibility of spending the night in Houston. We heard via a text message to Josh that they were able to get a flight out at 9 PM. We are lucky to land on time in Baltimore and Gabby picks us up shortly after we retrieve our bags. Josh pushes the luggage cart and I am able to propel myself in the wheelchair to the curbside pickup area. We arrive at Gabby’s apartment and realize we left the handicapped parking placard in my car at home. So Gabby drops us at the door and then parks the car. This will be our MO for the weekend – drop Debra at the door and then find a place to park the car. It is after midnight when we arrive in Gabby’s apartment and I need a bed to crash in. My hearing is muffled from the change in altitude and I am wheezing. We did not bring the nebulizer so I take some Lasix and go to bed. Gabby wakes me once during the night because I am wheezing loudly. I take another Lasix in the morning but I do not feel I am getting the full effect of the medication. Gabby sleeps in on Friday so that she will be well rested for her performance.

Adolescent and Young Adult Survivor Week 2009

We have just completed Adolescent and Young Adult Cancer Awareness Week. It is the 7th National celebration of this event, but the first year I am aware of attention being drawn to it. Many national cancer centers held conferences or other events to bring together patients, caregivers and long-term survivors who were diagnosed between the ages of 15 and 39. When I was diagnosed with Hodgkin’s disease at the age of 25, people preferred not to talk about cancer in children and young adults. Survival rates were 50% or less so if you were diagnosed, family and friends jumped to the assumption that you did not have long to live. I remember the first time I was admitted to the hospital. I went in for a week of tests to stage my cancer. Today, all of this would be done on an outpatient basis. When we exited the elevator on the fifth floor of the hospital, there was a sign welcoming us to their new Cancer Center. A social worker greeted us. My mother immediately switched from her regular glasses to her sunglasses. We had just come inside and it was not sunny in the hospital. I did not understand what was happening with my mother at the time, but the social worker did. She suggested the nurse take me on a tour of the unit while she talked with my mother. The sunglasses were so that I could not see her crying. I think she was glad to go to the social worker’s office and close the door so that she could have time to adjust to the fact she was leaving me on the CANCER floor of this hospital.

When we got to my room, there was only one bed and there was a woman in it. She was about 60 years old and told me she had kidney cancer. The nurse had been telling me about all the state of the art cancer treatments that were available at this hospital, which was staffed by UCLA physicians. I asked her if sleeping on the floor was a new cancer treatment. I was trying to lighten the mood, which had been way too serious since I was told I had cancer and would not be going home from the doctor’s office. My nurse was able to locate a bed for me, but I found that I had trouble talking to my roommate. I was worried about missing school, telling my husband I had cancer and using up my sick days at work. I rarely used sick days and the only time I was out for a week or ore was when I went on my honeymoon. She was worried about her bird being home alone. Her cancer was detected when the chiropractor she was seeing accidentally broke her arm while treating her. Somehow, that led the emergency room to a diagnosis of kidney cancer. My mother developed a friendship with this woman. I think it helped both of them to have something other than my cancer to talk about

When I had my surgery to determine how advanced my cancer was, I found out that some of the patients on the floor had asked that I be transferred to the pediatric unit. They thought I was a teenager and did not belong on an adult cancer floor. They changed their minds when I developed a pulmonary embolism after surgery. What I remember about that day was visiting with my friend Linda Bader, a friend from high school who had come to California to help me get through treatment. Her younger sister died from Hodgkin’s disease several years earlier. Linda wanted to make sure I did not die. I knew this because as the nurse was pulling her out of the room during my “code” she looked me in the eye and yelled at me, “If you die now, I am going to kill you!” I remember thinking that did not make any sense. That is the last thing I remember hearing. The last thing I remember feeling is someone stabbing me with a needle in my wrist. None of the doctors or nurses in the room talked to me during this emergency. I did not get a warning before being stuck with needles, before a hard board was shoved under my back or before someone pulled down my nightgown to attach sticky pads to my chest. At this time in my life, I was not a nurse and had no idea what was being done to me or why it was being done. It would have helped me immensely if anyone in the room had told me what they thought the problem was and what they were doing to fix it. All I knew was that it felt like someone was lying on top of my chest and that the someone weighed a ton. It was hard to breathe. It was scary. All of my support system had been dragged out of the room while the silent, masochistic medical team ran in.

This was my first major encounter with the medical system. I had appendicitis at 16, although I am still not entirely convinced it was appendicitis . I thought at the time it was a pulled muscle from helping someone out of a wheelchair while working as a candy striper. When I had my cancer surgery, I imagined I would be back at work the following week. I never imagined it would be six weeks recovery time or that the incision would be from my breastbone to my pubic bone. I felt as if I was carved up like a Thanksgiving turkey.

The first support group I attended for cancer patients was called Make Today Count. It was held at the community hospital near my home. At the last minute, I decided I did not want to attend. I had no idea what it would be like and I was shy, nervous about telling anyone I had cancer and frustrated at the fact that I was too weak from radiation and surgery to walk in the front door on my own power. Linda drove me to the meeting. She was pushing my wheelchair and when I told her I changed my mind about attending the group, she said she was pushing the wheelchair and it was going to the support group (with its passenger).

As we entered the room where the group was meeting, I saw a long conference table. Each seat was occupied by someone with either gray or white hair. Many people in the room were very thin. Most were wrinkled. Not one person in the room was younger than my mother's age. I wanted to turn around and run out the door. The group was very welcoming. They made room for the wheelchair at the table, served cookies and drinks and then went around the table and introduced themselves individually. As part of the introduction at their meetings, each person was required to say one good thing that happened to them since the last meeting. I could not think of anything to say. I hated my doctor, hated having cancer, hated missing work, hated having to drop out of school, and hated my body for not doing what I wanted it to. I just dumped all that negativity in the meeting. I was not planning to come back, so I thought this would be a safe place to vent. The group members had many helpful suggestions, the best one coming from a man who was in his 40’s. Prior to my attending the meeting, Allan had been the youngest group member. He loved his oncologist and suggested I fire my doctor and go see his instead. This was a shocking idea to me. I never considered it a possibility to fire my doctor. I thought if I told my doctor he was terrible at communicating and that I always felt as if I had failed him some way when my lab tests were abnormal, he would not want to take care of me and would tell all the other oncologists I was a bad patient so they would not want to take care of me either. Allan assured me his oncologist was different. He was right. Gary Dosik had just moved to LA from MD Anderson Cancer Center. His area of research was lymphoma. The first time I saw him as a patient, he told me we had to be a team. Since I lived in my body, he told me I was the best source of information about what was going on in my body. He wanted to be able to rely on my information while treating my cancer. He actually asked me if I would agree to be part of my own healthcare team. I do not know where Dr. Dosik is today, but if you are lucky enough to be one of his patients, you have a great doctor. You have a doctor who gets it.

It is an amazing thing to have a week dedicated to adolescents and young adults with cancer. It has been educational to find that cancer is the leading killer of young adults who die from any illness. It saddens me to learn that there has been no significant progress in the survival rates for young adults with cancer in the past thirty years. There are 9,500 new cases of pediatric cancer annually in the USA and 70,000 new cases of cancer in young adults. While 94% of all cancer occurs in those over 40 years of age, 10% of all survivors are in the young adult population (age less than 40). This means there are more than 1 million young adult cancer survivors in the USA alone. [Source: www.imtooyoungforthis.org]

Today there are a few clinics devoted to young adult survivors of cancer. We need this type of clinic in every cancer center. Some survivors have become researchers into our own peer group. Dr. Brad Zebrack, a professor of social work at USC was part of my Hodgkin’s support group from the 1980’s. Others lead advocacy or support groups – Ellen Stovall of NCCS, Lance Armstrong and Doug Ullman, of LAF, Matthew Zachary of I’mTooYoungForThis.org, Heidi Adams of Planet Cancer, Selma Schimmel of Vital Options. Still others have written books to help new survivors on their journey: Wendy Harp ham, Kathy Later and so many others. Since I know all of these people, because we are all passionate about survivorship and tend to travel in the same circles, it is easy to generalize and believe that all cancer survivors are talking about their disease, coping better than in years past and have the information they need for healthy survivorship. I have only to go to a national cancer meeting, or talk to patients in my own cancer center to be reminded that this lofty goal has not been achieved. Newly diagnosed survivors do not have the information needed to deal with the side effects, both physical and psychosocial, of treatment. They still struggle with financial issues, waiting months to hear from social security, fighting with their insurance provider for coverage of their treatment, trying to work through treatment or finding ways to pay the bills when they are unable to work. How far have we come in 30 years? How much farther do we need to go? Will the Obama health care reform improve survival for young adults with cancer? If we want to make things better for young cancer survivors and for all cancer survivors, we must work together to change the status quo. Go to the website for NCCS (www.canceradvocacy.org), click on “Take Action” and find out how you can help.

Healing Thoughts to All

“Healing thoughts to all,” is the way my friend Linda Zame signed off her emails and posts to the Long Term Survivors Listserv on ACOR. I am in stunned silence as I write this evening that my friend Linda died on Thursday night. She was in the hospital to start on TPN after dropping to 115 pounds following treatment for colon cancer. Like me, Linda was a long-term survivor of more than one type of cancer. Treatment left her with cardiac problems and her latest diagnosis with colon cancer began shortly before my own recurrence with breast cancer. Linda came to Stanford to be seen by Steve Hancock. She needed to see the best so I called a colleague, George Fisher, to see if he would see Linda while she was in the Bay Area. Unknown to me, he returned my call from the airport. He was on the way out of town but reviewed Linda’s situation and sent off an email to Dr. Hancock with his recommendations. Linda, her husband Bill and I met for dinner at PF Chang’s and then kept in touch while she was starting treatment at Stanford.
Linda started the long-term survivors’ listserv and was the driving force in making it the excellent resource it is. She often responded to people offline and provided information on the best resources for cancer survivors – physicians, clinics, studies of long term and late effects. In addition to her survivorship work, Linda loved opera. She had season tickets to the LA Opera and we often talked about the productions she saw. I told her about Gabby studying opera performance at USC and invited her to come and hear Gabby perform. She and Bill attended Gabby’s senior recital and told me they were blown away by her voice. This became something else we could share – something beyond the world of cancer.

I was amazed at all that Linda accomplished in her lifetime. She was well traveled, despite the difficulties of traveling when your baggage includes long term and late effects of cancer treatment. Linda was planning an extended trip to Italy when she died and invited me to spend some time with her and Bill should I be able to travel to Italy, as well. I am worried about making it to Baltimore. I had not even considered a trip to Europe. She talked hopefully about reversing her colostomy and about how helpful her sister has been by coming to stay with her and help care for her. We shared how lucky we were to have family members willing to put their own life on hold in order to help us fight the beast that cancer presents in our lives. She was amazed at losing so much weight and I am amazed that I keep gaining weight whether I eat or not.

Linda went into the hospital to start on intravenous nutrition in an effort to regain her strength and gain some weight back. She explained that it was simpler to start this in the hospital because of all the weight she already lost. I don’t think anyone anticipated this simple procedure would end in her death. Bill sent me an email explaining that she got up to go to the bathroom and felt dizzy. How many times has this happened to me? I can count the concussions from times I stood up, dropped my blood pressure and passed out. From my own experience I can take comfort in knowing that it happens so fast, you don’t have time to realize what is going on. One minute you are awake and talking, saying you don’t feel right, and then you wake up when it is all over. Or you don’t wake up at all. I thank God that Linda did not suffer. I thank God that she had the support of a loving husband and a loving family and that she was well aware of their love and support. I thank God for her friendship, for bringing us together to learn from each other and share our life’s experiences. I am so glad she was able to meet Gabby and to hear her sing. The world is a better place because Linda lived in it. I will miss her. I will never forget her. Healing thoughts to all who knew and loved Linda.

Faux Pas?

I just listened to the late news. Much to my surprise, the teaser was the faux pas committed by Michelle Obama when she visited the queen of England at Buckingham Palace. Of course, you had to listen to the entire news program before the nature of the faux pas was revealed. What was this grievous act? It seems that while they were visiting the Queen slipped her arm around Mrs. Obama’s back in a gesture of affection. Mrs. Obama returned the gesture. This has supposedly distressed the British people. One is not supposed to touch the Queen, even if she touches you first. Personally, I think it would be more offensive to ignore an obvious gesture of affection from the Queen but I do not know the first thing about royal rules of etiquette. From the perspective of someone who thinks about life and death on a daily basis, the news flash was the symbolism of an affectionate exchange of touch between the leaders of two world powers. I read into that gesture the hope of cooperation and collaboration between those world powers in solving the economic crisis, resolving world conflicts, preventing any future world conflicts, reducing global warming, and attempting to bring about peace and prosperity for all nations. I know I am a hopeless optimist. I prefer looking at the positive implications of any scenario. I was also encouraged by reports of President Obama meeting the leaders of Russia and
China. I prefer open and honest dialogue to threats of weapons of mass destruction. In the sixties, the popular slogan against the Vietnam War was “Make love not war.” Forty years later, it is time to live that slogan. The UK is our ally, despite the thousands of protesters who smashed windows in the financial district today while carrying signs declaring the ineffectiveness of capitalism. It would be nice to be able to say that all of the major world powers enjoyed a positive relationship and agreed to work together to make the planet one where we could all live together, sharing its resources and ensuring a positive quality of life for all its inhabitants.

Mrs. Obama did not commit a faux pas, in my opinion. She and Queen Elizabeth took a step toward showing the world how its leaders should behave toward each other.

Earthqake!!

I had an exciting weekend with unexpected company and nice weather. Friends Dotty and Mike Sanford were in the area visiting his children and stopped by after not being able to reach me on the phone. I met Dotty when I was being treated for Hodgkin’s disease in 1980. Her husband Alan was in my support group and he was the one who convinced me that it was okay to fire my first oncologist. This was the doctor who told us, “Do this or die” when we asked if there was an alternative to the treatment plan he outlined. As it turned out, Doug was correct in his assessment that the amount of radiation I was to receive was too much radiation. I had nearly 6,000 rads of mediastinal radiation. That is radiation to the center of my chest, which 25 years later caused my breast cancer. Of course, who knows whether I would have survived 25 years after being diagnosed with Hodgkin’s disease without this radiation? Today’s treatment protocol for Hodgkin’s disease includes only about 2400 rads of radiation along with chemotherapy. I have kept in touch with Dotty over the years. She became active in the Sierra Club after Alan died and met Mike while she was climbing mountains. It was good to see her and spend some time catching up.

I also had a nice long letter from another old friend this week. Mary and Wayne Saddler are friends we met when Josh was a baby. Josh and their daughter Michaele went to Gymboree together, were in play groups in Las Madres and we were also in a babysitting coop. We were sad when they moved away, first to Santa Rosa and then to Ventura, California when our children were still young. We have stayed in touch and they attended one of Gabrielle’s performances at USC when I was too ill to attend. I think that is the only performance (of opera scenes) I ever missed. Mary gave me a full report and they were there to support Gabrielle in person. Mary was also there for the operas and graduation at USC. It was great to have a nice long letter to savor. Friends make such excellent medicine on days when you are down. I have been waiting for my “boost” from the blood transfusion to kick in, but have been in bed much of the time since chemo. Friends make the day better in all ways.

Patrice is back from St Louis and her Jubilee celebration of her vows. She said the liturgy was wonderful and she was able to see her family and have a nice dinner with them. I wish I could have seen the celebration and heard her give the homily. She did let me read it before she left and I thought it was great with a nice surprise ending. I missed her while she was away. Today she is going to come by and take me out for a short while.

This morning my cousin Pam called from the East Coast and while we were on the phone, we had a 4.6 earthquake. The house was rolling for quite a while and now I am watching the news accounts as we wait to see if there will be aftershocks. Josh slept through the whole thing. My bed was moving as well but as I looked outside, I could see the sun shining on the lemon tree and a slight breeze blowing in the backyard. I guessed the magnitude would be at least a four and I was right. They just announced the epicenter as Morgan Hill, which is the next town south of San Jose as you drive down the 101 freeway. Fortunately, nothing fell off the shelves so I do not think there was any damage. They just announced the quake was off the Calaveras Fault on a new fault line and was a 4.3 quake located 11 miles north of Morgan Hill. This is quite close to the house.

The government released its report on the health reform summit today. It is 56 pages long. You can download it from the web at www.whitehouse.gov. Go to the White House Blog and look at Nancy-Ann DeParle’s March 30 blog entry. The report is White House Forum on Health Reform Report. Another shorter report is available on www.HealthReform.Gov and is The Cost of Inaction. It is a compilation of statistics on the cost of doing nothing with respect to health reform, including the impact on the economy in general. It seems the location of the California summit on health care reform was changed from May to April and from San Francisco to Los Angeles. I was hoping to attend this summit but it will be much harder to get to LA than to just drive up to San Francisco. I guess I will have to rely on my frequent emails to the President to try to make my opinion heard.

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.

Another (Long) Day in the ITA

Thursday was chemo day once again. This is the week when I do not have a clinic appointment. I just go the Infusion Treatment Area for a lab draw and then get my chemotherapy. The drugs and dose are the same as last week so there is no need to see the doctor as well. Bob is out of town this week, which turned out to cause a delay in other matters related to my pain management, but I will get to that later. I had a 9 AM appointment that meant driving to the Cancer Center in rush hour traffic. It was a hassle getting Josh out of bed and then getting him out the door, but we managed to arrive relatively close to our appointment time, cruising into the check in line at 9:08. We then had to wait 30 minutes before being called back for a lab draw. All labs for chemotherapy patients are run stat. This means the results are supposed to be back in one hour. We planned for Josh to drive up to the new Pain Clinic location in Redwood City to pick up my narcotic refill. I called the pain clinic on Wednesday to let them know that the Fentanyl patch is not lasting the full 72 hours. Dr. Carlson suggested changing the patch every 48 hours as the patch does give good pain control for the first 2 days. On the third day, the pain returns in my neck, back and legs. I can use the Dilaudid for breakthrough pain but I am still having a gag reflex when I try to take my pills. I already have to take 22 pills a day, without adding any more for breakthrough pain. The pain clinic set up a system where you can email them your current question or problem and they are supposed to call you with a solution within 24 hours. When I did not receive any response to my emails, I started calling them at the new location in Redwood City (Stanford’s new outpatient North Campus). I found out the email system has not been transferred to the new location, but there is no notice of that on their website. So, on Thursday I arranged for Josh to pick up the prescription while I got my chemotherapy. Redwood City is an hour away from the house and 20 minutes from the Cancer Center. Rather than changing the time interval between Fentanyl patches, the physician wanted to increase the dose. Josh thinks this is to prevent abuse of narcotics by patients who will store up extra patches for the time when they cannot get a prescription. I do not think this philosophy should be applied to terminal cancer patients. There is no point to storing up narcotics in my case.
When I was able to speak to someone in the pain clinic, I learned they mailed the prescription to the Walgreen’s in the Cancer Center on Wednesday. I told the clinic’s MA I had specifically instructed them NOT to mail the prescription because I was wearing my last patch and the pharmacy told me it would take a week for them to get and process the prescription. The reaction was for her to get defensive about the fact that I did not speak to her on Wednesday. I thought this was a very strange reaction. I then suggested having one of the doctors at the Cancer Center write me a prescription so that I could fill it while I was at the Cancer Center. The reaction to that suggestion was even more bizarre. I was reminded that I had signed an exclusivity contract with the pain clinic when I first became a patient (in 2005). This contract stated that all of my narcotics needed to be prescribed by the pain clinic physicians. I felt like a suspected drug addict or possibly a patient who made money by selling their prescribed narcotics for a tidy profit. The response I wanted was concern that my pain is controlled rather than harassment as to who writes the actual prescription. There should also be concern that I am not put into physical withdrawal due to a mix-up in whether the prescription was to be picked up or mailed to the pharmacy. At the end of the phone call, the MA (medical assistant) agreed to ask the physician in the clinic whether he/she would be willing to re-write the prescription for Josh to pick up. I was to wait for her to call me back. Two hours later, I had not heard from her so called the pain clinic again. At that time, she was out to lunch and would be gone for 30 minutes. I left her a voice mail, explaining again that I lived an hour away from the clinic, I was wearing my last Fentanyl patch, and that my son was still waiting to hear whether he should drive up to the clinic for the prescription. I waited an hour and a half, a total of four hours since my first phone call to the clinic, before calling again. The prescription was not at the front desk. The secretary said she would go look for it elsewhere in the clinic and call me back. In the meantime, I paged my physician’s assistant in clinic to see whether she would be willing to write me a prescription for at least a couple of patches to cover the time it would take for the pharmacy to receive and process the prescription that was mailed to them on Wednesday. I also called the pharmacy to ask whether they received the prescription in Thursday’s mail. They did not. My PA was willing, but unable, to write the prescription because she needs Bob Carlson to co-sign narcotic prescriptions for her. From the beginning of the blog, you know that Bob is out of town until Monday. Finally, at 3 PM, the pain clinic called to say the prescription was found sitting on the desk of the physician and I sent Josh to Redwood City to pick it up. I wonder what would have happened if Josh drove to the pain clinic at 9:30 AM without my calling them first to make sure the prescription was ready when he got there. His original plan was to drop me off at the ITA and leave right away because if you take the car out of the parking lot within the first 45 minutes of parking, there is no charge for parking.
While I was dealing with the pain clinic on the phone, I was also trying to get my chemotherapy started. My labs were drawn shortly after 9:30 AM. My blood counts were back in a little over an hour, but two hours later, we still did not have the result of my metabolic panel. This is needed because the dose of Carboplatin is based on my kidney function and a test result called the serum creatinine. The pharmacist cannot mix the carboplatin without knowing this value. When the results of my blood chemistries finally came back, the creatinine was fine but my liver function values were elevated again. They have been elevated almost every time I get chemotherapy, but the increase over last week was enough to trigger a call to the PA to make sure she still wanted to give me chemotherapy. She did. From my appointment time at 9:00 AM until my first premedication was given at 12:53 PM was almost 4 hours! I should have finished my chemotherapy by that time. Everyone who was in the infusion room when I arrived was gone by this time. I even managed to move over to a chair by the window when that person left. People who came into the infusion room after I was there were also gone, having finished their chemotherapy before I even started mine.
The Gemcitabine was given first and took slightly more than an hour to infuse. During that time, I called MetLife to attempt to get a quote for continuing my life insurance, Downey Savings about transferring my IRA to my TIAA-CREF account, Bank of America about my missing ATM card and shopped online for a color printer/scanner. I also talked to Gabby and found out she will perform in Onegin on April 17 and April 19. The Carboplatin was started at 2:05 PM while Josh was en route to the pain clinic. I asked him to get me something to eat on the way back because my empty stomach was starting to churn out acid. He has a class at 5 PM so we needed to rush home once the chemotherapy was done. It was going to be very close. The carboplatin takes about an hour to infuse and then I needed to have my port flushed and disconnected. We then had to pack up, get the car and hopefully get on the freeway before rush hour traffic was too bad.
The battery on my computer was dying out while Josh was gone. I stood up and tried to plug in the charger but my oxygen tubing did not reach far enough to get me to the plug on the wall next to my chair. Directly behind my chair, I saw several available outlets, so I turned around to use one of those. In doing so, I must have pulled the call light cord out of the wall because there was suddenly a rush of staff around my chair looking at me. I had no idea why they were there and they did not say anything. Later, when my IV pump alarmed, I looked for the call light to let my nurse know about the pump and found both ends of the cord in my chair. I used my voice as a call system and it seemed to work just as well. The patient in the chair next to mine had the curtains pulled all around her chair for privacy, which blocked my view to the nurses’ desk and their view to me. Staff in the ITA and in the emergency department rarely makes certain I have a call light nearby when they leave my area. When I need to call for assistance, I have to go hunting for the call light. Usually I look behind the bed to see where it is plugged into the wall and then reel in the cord until I find the call button.
I read a couple of interesting articles in the Oncology Nursing Forum while my chemotherapy was infusing and Bev came over from F Ground to visit in the morning while I was waiting for my lab results. I did some work on the internet and made many phone calls. Josh arrived from the pain clinic and Walgreens just as my nurse was removing the Huber needle from my port. He wanted to stop at the Oriental market on the way home to buy fish for dinner. He planned to make sushi. We made great time on the freeway, using the carpool lane. I waited in the car while Josh ran in to shop. While he was in the store, I opened the bag from Walgreens to check the prescription. It was supposed to be for Emend, the anti-nausea drug I take on the first 3 days of my chemotherapy cycle. When I looked at the bottle, I found the wrong drug! A perfect end to the day. I called Walgreens to ask why they gave Josh Ativan instead of Emend. Emend is a difficult drug to find as it is expensive, relatively new, and only used for chemotherapy patients. It was going to be impossible to drive back to the Walgreens at the Cancer Center to get the Emend, so they offered to call other Walgreens in San Jose to see if I could get the prescription filled closer to home. They found a pharmacy that is 9 miles from the house and I arranged for them to have the prescription ready for pickup after Josh’s seminar.
I have not included everything that happened in today’s blog entry. Believe it or not, there was more. I did register a complaint before leaving the ITA. I feel that 4 hours is too long to wait for my chemotherapy to start. I should be done with chemotherapy in that amount of time. If I arrive at 9, my labs should be drawn by 9:15. There is a sign in the waiting area asking patients to inform the receptionist if they wait longer than 15 minutes for their appointment. If the labs are drawn by 9:30, the results should be back in one hour. I can give the pharmacy another hour to make up the drugs which means my premeds could be given at 11:00 and the chemotherapy started at 11:30. Infusion time for Gemcitabine is about an hour and it is followed by another hour of Carboplatin. Chemo should finish by 1:30, followed by 30 minutes to flush the line, disconnect the Huber needle and send me on my way. We could then beat rush hour traffic and be home in plenty of time for Josh’s class without having to rush. If you remember last week’s blog about chemo day, we were at the Cancer Center until 7:40 PM following an appointment time of 11 AM for lab draw and 12:45 for the doctor.
I know that hospitals are feeling the impact of the economy. The hospital is full all the time, but is not being reimbursed for many of the patients who have no health insurance. This number has been rising steadily. One hospital in the area has closed its doors for two months while it reorganizes under new management. This put a strain on all of the other hospitals in the area. Patients cannot be turned away without being evaluated first. This is having an impact on the emergency department where the wait is long. Cancer patients can be seen in the ITA rather than the emergency department, but this impacts the amount of time patients in the ITA must wait for their appointment. There are a finite number of beds, a finite number of nurses and a growing number of patients. Add to this picture the fact that the outpatient area has recently gone live with the new EPIC computer system and nurses are still learning to work with this system. Many patients complain their nurses are always looking at the computer rather than spending the usual amount of time interacting with patients. I keep thinking about a conversation I had with Rep. Zoe Lofgren last time I went to lobby for health care. She told me the health care system was not going to get fixed until everyone realized it was broken. I do not know how we are going to accomplish this. People who are not impacted by health care do not want to think about it. This is not an issue that is going to go away or get better on its own. The system is not only broken, it is going to start resulting in increased mortality if we do not do something about it NOW. I have been trying to improve access to quality cancer care for all Americans since my sister died in 1986. That is a long time to work on something without seeing significant progress. It is hard not to get discouraged. It is exhausting to deal with insurance companies, benefits departments, the billing department of the hospital, social security and pharmacies almost every day when my focus should be on helping myself feel physically better. I do not want to sound like a whiner, but I need to know this is going to get better. Can anyone promise me the bureaucracy of illness will consume less of my time every day so I can focus on feeling better?

Hope in a jar.

I bought some hope in a jar this week. It is a small jar of cream moisturizer made by a company called philosophy.com. The front of the vial states, “Where there is hope there can be faith; where there is faith miracles can occur.” I wish it were really that easy to have hope. Some days it can be very elusive and other days it is just there. I hope for a cure, for a day without nausea, for energy to get up and do things, for the ability to travel and see family and friends. There are days when I hope for my old life back, when I was the one taking care of others rather than having others taking care of me. There is much to hope for in life and I am always ready to welcome a miracle. A couple of weeks ago it was a miracle to keep a meal down, but I did it and my counts came up enough to have chemotherapy the following week. That was my miracle for the week. I ended up taking a vacation from chemo that week, but that too was just what I needed. This week the side effects are not as bad after having that extra week off treatment.
This week I am starting to get excited about the trip to see Gabby sing. She is in rehearsal so late that we do not get as much time to talk on the phone. We used to talk every day and she would get upset if we missed a day. Now she is so busy, it is hard to coordinate breaks in rehearsal with the three-hour time difference between California and Maryland. I was on the phone today ordering an electric wheelchair, reserving the oxygen concentrator, getting travel insurance and trying to square things away with my insurance companies. I am in the middle of converting my benefits at work through COBRA. Each thing is separate and complicated, with different rules and a very short turnaround time. I worry that the clock is ticking and I have only 31 days to make the conversion. I need to complete all of this paperwork before I will feel comfortable and secure in getting my medical needs met and paid for by insurance. I applied for a waiver of premium and the benefits specialist at Stanford tells me that if this is approved, the premiums I have already paid will be refunded to me. That would be fabulous because I could use the money from the health insurance premium to cover the life insurance premium.
The change to daylight savings time this weekend feels different from other years. I am waking up when it is very dark outside and going back to sleep until it is bright sunlight outside. Since I do not sleep through the night, I do not feel rested when I wake up and then keep napping during the day. Josh and Amanda are having trouble adjusting to the change in time also. I was able to go out on Sunday afternoon. I went to Jamba Juice, had my nails done and checked out a new gelato store next to the nail place. Since my trip to Italy last year, I am always looking for good gelato in the US. This is a very small place but the gelato I tasted was good. They ran out of several flavors by late afternoon, when I got there. I am looking forward to sampling some more flavors. A very simple thing, gelato, but one that can bring a great deal of joy as well as bringing back some great memories of a trip I did not think I would be able to make. Now that I think about that trip, I really pushed myself to be able to go. I knew that there would be others in the group who needed to struggle with all the walking and I tried to keep up with them. I wanted to experience everything I could on the trip and I did my best to accomplish that. I suppose whatever I do, there will always be others who are also struggling to keep up. I can use them for inspiration and push on to make my goals. For the short term, that is getting through the next few chemo treatments in good enough shape to make the trip to Baltimore. I can use my jar of hope for inspiration as well. While I have hope, I can push on in faith that I will make the trip and see Gabby perform, visit my mother in NJ and make the oncology nursing meeting .

Success At Last

Success at Last
Yesterday was chemo day—actually that would be two days ago since it is 2 AM as I write this. Thursday was a very successful day. Josh and I were out of the house on time for a change, and I even had time to shower, wash and style my hair and put makeup on before we left. We stopped at VITA Administration in Mountain View to drop off my first COBRA check so that the pharmacy portion would be reinstated prior to my chemotherapy appointment. Thanks to help from Laura Gothic in human resources, the cancellation of my health insurance was reversed within 48 hours of my phone call to the benefits office. I arrived a bit early to the ITA (infusion treatment area) to have my blood drawn and then met with Bea Bravo, my oncology social worker, who is helping with the rest of my benefits that have been cancelled. We went over my list of questions for the benefits office. When I tried to ask my questions prior to the time my benefits were due to be cancelled, I was told I would have to submit any questions in writing first and the benefits office would then respond to my list of questions. They did not promise to answer the questions, just to respond to the list. Bea suggested she review the list first to be sure I did not omit any areas that might be important or come up later. We were just getting around to doing that because of time constraints and the fact that I have felt so rotten the past couple of weeks. I took notes on her comments and revised the list. I called Laura on Friday to verify her email address so I could send her the list of questions. She told me a benefits specialist named Monique had been assigned to me and that I should submit the questions to her. Monique was to call me on Friday or Monday. I emphasized to Laura that the clock is running on converting my supplemental life insurance. I know that my portion of the premium is $91.77 per month, but I will have to pick up the Stanford portion of the premium as well. I do not know what that amount is.
On Friday, I received an acknowledgement in the mail of the check I dropped off on Thursday and enclosing 18 envelopes and payment coupons for my 18 months of COBRA coverage. By the end of that time, I should be eligible for Medicare. The ominous cover letter contains several warnings: the premium can be changed at any time and VITA may not notify me in time to change the amount of my monthly payment; that if I am late in a payment my COBRA will be cancelled permanently and nothing can be done to reinstate it; and payments are due on the first of the month. I am paying $617/month for my health and dental insurance. That is 7404/year. It seems like quite a lot, but the expense of not having insurance is far worse. I will have to be very good at budgeting things, but I think this can be done.
Also on Friday, I received my first social security check. There was no explanation of the benefit amount and I was told by the paralegal at the disability law firm that I was approved for $2012/month. This check was for $1500 so we are guessing the law firm got their 25% of the first check fee. They did absolutely nothing to deserve this fee as I ended up doing all the work. This included calling them all the time to ask what they had done. All of my requests for a written documentation of the work done were ignored. They promised to send it and never did. This included my most recent request for documentation of work performed by any member of their law firm. I tried to file a complaint with the state bar association, but was told I do not even have enough information to do this as I was always passed off to a paralegal and never spoke to any attorney in the firm. The bar associate I spoke to insisted there had to be a lawyer working on my case because it is illegal for a paralegal to handle the case alone. If there was an attorney, I never had his/her name, never spoke to him/her on the phone, and never received any correspondence signed by anyone other than a paralegal. In addition, this firm of 60 attorneys has only one fax line so it was impossible to send a fax during normal business hours. This seems like malpractice to me. To tell a client to fax something to you without mentioning that you will likely get a busy signal for hours, is at the very least extremely rude. Add to it the fact that your entire client list consists of people who are permanently disabled and may not be physically capable of staying next to a fax machine for hours just to hit the redial key every time amounts to intentional infliction of physical and emotional distress. Josh feels I should just let it go. The firm got $500, which he feels, is a lot less than they expected. We also felt the first check was going to be larger since we applied for benefits in August 2008. Evidently, there is a 5-month waiting period to receive benefits. My first check is for the month of March. Social Security deducts the amount of my state disability from the federal award until the end of 12 months, at which time my state disability benefits end.
Finally, Friday’s mail brought the great news that my insurance company has approved the $30,000 statement I received from Stanford for payment. That was when I did not know Stanford cancelled my health insurance and I went into the ITA for a blood transfusion, fluids, anti-nausea meds and electrolyte replacements.
One more thing that could be considered a plus for a day of mail---I did not receive any bills to be paid! There was cute card from the Toolbox team with individual notes enclosed from everyone who attended the meeting. I wish I was well enough to travel to San Antonio for the meeting, but I am now trying to get strong enough to travel to Gabby’s opera and then NJ and San Antonio. Tina told me yesterday that she is going to come to San Antonio with Josh and me. She cannot stay the entire time we are in San Antonio but she can help with the flight there and help take care of me, which will give Josh more time to do his schoolwork. Also found out the hotel where we are staying has a spa and if my platelet count is high enough, I want to have a massage while we are there.