Sunday, January 4, 2009

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.


9 comments:

  1. Hey kiddo, you are a miracle. I am so incredibly proud of you and your courage to keep on truckin'
    The whole world should know how amazing you are and your ulta-amazing pursuit to live
    bless you so very much
    lots of love, LK

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  2. hey kiddo, you are amazing. I am so proud of you.
    You are incredible and an inspiration to all. I wish the whole world could know of you be the wiser for it.
    Bless you so much
    lots of love

    Lynda Kay

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  3. Hi Debra....I understand your struggle with the limo...but I have a few travel experiences with you myself! It seems that you traveled with some unusual "tools" to some of the trips we were on...and it quickly became moments that I needed to appear to "not know you". How you kept a straight face explaining why you had what you had..I will never forget! Also traveling with me when I was the one who may need oxygen..and we both checked in "disabled" looking very normal. Oh the things we can hide when we want to..

    I am also smiling at the "great blood donor"...because no one believed me when I would say "I must have gotten 18 year old blood"...because sometimes it was such a boost. I say...keep going for the "great blood" and defy the odds.

    You are a very strong person and I remember talking to Lynda Kay about you alot after we had our Club Survivor meeting. Then there was the day when she called and asked if I thought it was ok if she donated artwork in your name at the Cancer Center. Whoa...no one ever asked me that question before..but I am sure glad she did. What a great tribute to your fight and your contribution to the cancer community. I am sure glad we all made the connection!!

    Take care,
    Jere

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  4. Debbe I am here in Livermore! You are my long-time friend and inspiration since NHS. When is the best time to see you?

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  5. Debbe,
    I was so relieved to get your holiday card and newsletter last week. All of us at NCCS (Board and Staff) have been eager to hear how you are managing with all the challenges that come with this stage of survivorship you are living with. You have always been and remain an incredibly articulate and passionate advocate for how to manage survivorship in the face of many daunting and unforseen circumstances. You have the admiration, respect, and love of so many. All of us at NCCS are holding you in our hearts with healing thoughts, caring and friendship. Thank you for letting be with you via this blog at this stage of your journey. We will stay in touch.

    Love,
    Ellen

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  6. Debbe,
    I wrote a note on this blog but it appeared not to go through. I was so glad to see the website and to know there is a way to be in touch with you as you experience this stage of survivorship. All of us on the Board and staff of NCCS have been thinking of you and are amazed by your will to take journeys with your children that are challenging your physical stamina, but clearly are creating such good memories for you and your children can revisit again and again. The pictures say so much. I send you healing thoughts and so much appreciation for allowing us to have this window into your life as you wrestle with this damn cancer. We will look to this blog to stay in touch with you and I send you a very big collective hug from so many of us at NCCS who care about you.

    Love,
    Ellen

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  7. Aloha Debra,

    I love your blog idea. I was glad to see you were able to do more in Kauai than I thought with the not so great weather.

    By the way, you're my hero. You accomplish more than I do! Did you get to see the Patrick Swayze interview with Barbara Walters?

    Please give me a call or email me when you're up to it....I'd love to come down for a visit. Even if you would like me to be there to get you to the infusion center or anything else I can help you with. Home ph is better than cell...530)878-8699 and my email is jgkailua@gmail.com.

    Lots of love and aloha,

    Joanna

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  8. Hi Debra,

    Thought I'd try one more time to make this posting work.

    I am so proud of you and far you have come, especially after spending that year with Jason at Stanford and what I saw and learned. You are my hero! Hope you can keep suprising the Doctors and everyone.

    My codependent, caretater nature in me is going nuts wanting to know how you're doing and if I can be there to help out. Check the emails I sent to debraocn@sbcglobal.net.....especially the one about sodium bicarbonate.

    Love you,
    Joanna

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  9. Hi Debra,

    I'm going to try one more time posting. It's quite tricky.

    Anyway my codependent, caretaker nature in me is going nuts wondering how you are doing and if I can be there to help out.

    You totally amaze me how you've pulled through every setback....you're my hero! I sure hope and pray you have more suprises for the Doctors and everyone.

    Please check my emails I sent to debraocn@sbcglobal.net, especially the one about sodium bicarbonate and stopping cancer.

    I love you,
    Joanna

    ReplyDelete