Why do I blog?

I posted my first blog entry and my daughter's evaluation is that "you're writing too much." She didn't read the entry. She looked at the amount of writing as I scrolled down the page to show her my first two followers of the blog. I don't know if there is a set length a blog entry is supposed to be, but I will try to be more succinct in the future.



I've started this blog for two primary reasons. I would like to keep my friends and family updated on my health and I also want to share my thoughts as I reflect on my life. There is a big "disconnect" between my head and my heart when I think about the prediction that I have "days to weeks" to live. Most of the time I do not feel as if I am dying. There are times, particularly when breathing is difficult or I am in pain, that I DO feel as if my life will end soon. Many people have encouraged me to write a book to share all of the experiences I've had. I'm not sure I have enough time to complete a book. I have agreed to try and my daughter has agreed to help me. [Helping involves more than asking me several times a day "How's the book coming along?" or "Have you written anything today?"]



My purpose is to inform and to educate. I aim to inform and educate myself as well as others. Last week I was reading a blog entry by Dana Jennings in the New York Times. Dana has prostate cancer and has been writing about his experiences since November 2008. I love his blog because he is both entertaining and honest. He talks about sex after surgery and about hormones that transform men into women as they devour any remaining cancer cells. These are subjects I have been lecturing about for many years, mostly at conferences for cancer survivors. At my last "Sexuality and Intimacy" workshop, there were 48 women and 2 men in attendance. The men stayed to talk to me while I put away my samples of sex toys, lotions and potions. They told me they had assumed the workshop would be for men and were very surprised to walk into a room full of women. I didn't mention that most of my workshops are attended by women. My "matter of fact" delivery of the necessary information was the best part of the workshop for them. That is the whole point of the workshop --- to give patients information they need in a format that is easy to understand.

So, for my daughter's sake, I will end my blog entry now. I will try to keep my entries short and to the point. This is a warning, that I can also be wordy and that I think things out while I write. Living with dying is not an easy task. I have read about it, taught nursing workshops on caring for dying patients and for patients in pain, and taught patient workshops on preparing for death. None of these has completely prepared me for actually living with the fact that I am dying years before I planned to. I hope we can help each other and learn together.

Traveling while living with cancer.

Sunset at The Point at Poipu Beach

NaPaLi Coast from deck of The Lucky Lady

Waimea Canyon from the air via

Wings over Kauai with Bruce, our pilot

The NaPa Li Coast from the air, again

with Bruce flying us in Wings over Kauai

I'm not sure which waterfall this was. It was

on our drive to the North Shore

The new year is upon us and I can't say that I did anything very exciting to welcome it. I have been exhausted since our return from Kauai. It was very cold when we got back and the driver I hired to meet us at the airport was nowhere in sight. Josh and Gabby piled our luggage onto a cart while I called the limo company to track down our ride home. I was told that there was a mixup with our driver and the dispatcher wanted to know if we wanted to wait 10-15 minutes or just grab a taxi. I looked at the cart piled high with our luggage, carryons, and bags, then considered the space needed for me, my oxygen and my wheelchair. I said we'd wait. We had figured out how to load everything into the Lincoln Town Car on the way to the airport and it required putting the wheelchair in the front and the three of us sharing the back seat. The trunk was filled to capacity with everything else. I could not imagine fitting everything into a taxicab.

Twenty-five minutes later a driver appeared. He was from another company, so I assumed there was some cooperation among the few limo companies servicing San Jose airport. Josh showed him how to fit everything into the trunk, told him the wheelchair had to go in the front seat and we were headed for home at last. When we arrived it was all I could do to go straight to my bed and promptly fall into a deep sleep. When I woke that evening, Josh and Gabby were still asleep. My exhaustion continued for the next two weeks. Tonight is the first time I feel some energy and that is probably steroid induced as I had chemo yesterday.

Two images come to mind from this little adventure. The first is from my childhood. Limos were pretty special at that time. I only saw them for weddings and funerals. I always wondered about the occupants, whenever we saw a limousine on the road. I remember seeing a limousine on a pretty regular basis when I was a child. The reason for it only made sense to me years later. My brother was living on Friedland Road in Nutley, New Jersey at the time. I visited frequently to play with my nephew and niece. It was a very short street with duplex apartments. A long black limo started to appear parked at the apartment across the street. When we played outside, I would go over and peek in the darkened windows of the car, leaving my breath marks on the window. Sometimes there were men in the back seat, just sitting and talking. At other times the limo was empty, waiting for someone who needed a ride somewhere. We played guessing games, trying to imagine who might be rich enough, or famous enough, to need a long, black limosine so many times. Years later I discovered it was for Frankie Vallee who lived there with his children in the earliest days of his fame. I wonder if Nutley is mentioned in Jersey Boys, a play I still want to see.

The second image is really a thought. Looking at all the bags with me in the wheelchair hooked up to oxygen, I could not imagine making this trip without Josh and Gabby to help me. It was pretty smooth sailing on the way to Kauai. All of the flight attendants were surprised to see me with an oxygen concentrator, in spite of numerous calls in the weeks before our trip to verify that I had obtained one of the FAA approved models that was listed as acceptable to American Airlines. Each time I called, I asked whether there was a notation on our reservation that I would be traveling with oxygen and a personal wheelchair. Each time I was assured it was noted in the record. They were all extremely helpful with pre-boarding and helping us get settled in with the oxygen. This needed to go under the seat in front of me, but was a tight fit. It left little room for my legs for a 6 hour flight. Fortunately, the plane was not full and each of us was able to stretch out across three seats. As our oxygen supply got close to empty, the flight attendant showed us a cigarettle lighter type outlet to plug in the charger.

I'm sharing this much detail about the mechanics of our travels because I don't think people understand how much planning and pre-arranging is involved when you travel while you are sick. Sometimes this travel is necessary to seek a second opinion or obtain treatment available only at a particular medical center. I well remember a short flight from San Jose to Seattle with my sister in a wheelchair and heavy envelopes full of xrays and scans, test results and pathology reports piled on her lap. Not only were these large envelopes heavy, they were awkward to carry. Our flight was delayed and then cancelled because Seattle was having a freak snowstorm, closing their airport. We had to come back the following day and try again. I also remember flying to New York as an oncology nurse to bring a friend home who oringinally went for a second opinion, ended up getting sicker while there, and coming home directly from the hospital. An ambulance was to meet my arriving flight and we would ride the same plane back to San Jose. We had to be seated in first class, in a seat that would allow me to take care of my friend.

Travel under difficult circumstances can always be arranged. It helps if someone who has done it before can help you. Some hospitals have arrangements with airlines to provide seats at a discounted rate for patients or family members coming to visit at a critical time. At Stanford, the oncology social workers know how to work with the airlines. It generally requires a note on hospital letterhead signed by a physician. I watched http://www.kayak.com/ for weeks to check for the lowest possible air fares. I had time to plan this vacation. Sometimes you don't have the time to plan in advance. That is what credit cards are for. You can pay it off later. The important thing is to meet the needs of the patient and family.

When we arrived in Kauai, I was so relieved. I was not entirely sure I would be able to get to Hawaii. I had a blood transfusion the day before we left to help with my energy and my breathing. It must have been a great blood donor because I did not let down until the very end of the trip, when I knew my bed was nearby. It was a fabulous trip. Hope you enjoy the photos.