The Joy of Flight

 
“I used to savor the plane trips on the way to a story. Usually that would be the last chance for a decent meal. And yes, given where we were usually going, airplane food actually counted as a decent meal.”
 
 

I used to travel a lot. Sometimes I'd be on the road at least six months out of the year. And I loved it. And that didn't count vacations. Early in my career as a journalist, I used to take what I considered adventure vacations: safaris in Kenya, visits to China and Tibet. But as I traveled more and more for work, and as those trips became more "adventurous," my idea of a vacation changed. I wanted to just go and relax. I think the high point, or low, depending on your view, was when we went to a hotel on the Big Island of Hawaii. Each lounge chair by the pool had a little plastic flag on it. If you wanted a drink, you just put up the flag. You didn't even have to raise your hand. That was about as far from adventure as you could get.

Of course, all of that changed about a year and a half ago when we found the cancer. I kept working during most of the time that I was being treated. I even made a couple of day trips. But that was about it for travel. Unless of course you count the drive up to Baltimore to Johns Hopkins for chemo, or scans, or radiation or whatever. If only I could have gotten bonus miles for those trips.

I used to savor the plane trips on the way to a story. Usually that would be the last chance for a decent meal. And yes, given where we were usually going, airplane food actually counted as a decent meal. The last chance for a drink. The last real bathroom you might see for weeks. It was the calm before the storm. And it was also the last time that it would be quiet. No more phone calls, no more e-mails. All the planning that could be done, had been done.

I'm writing this on the plane, on the first vacation, the first real trip, I've been able to take. I realize that I've lost a lot of my old habits. I used to be able to pack in my sleep. Now I have to think about it. But I have to admit that it sort of feels good to be back on the road again. It's a little piece of my old life that I've been able to regain.

I'm looking forward to doing a lot of nothing on this vacation. I've brought a couple of good mysteries, and I plan on sitting by the pool and just relaxing. Quite honestly, over this last year and a half, I've had enough adventure. But I'm pretty sure that they got rid of those little flags on the lounge chairs. Oh well.

Leroy Sievers is on vacation. He'll update his blog occasionally while he's away.

 

Comments (Send a comment)

Enjoy Hawaii, and do us all a favor, by NOT updating your blog on vacation...

You can tell us all about it, upon your return..

As we do, when we're on vacation..our pager status goes to 'Not on call, and not available'...

Sent by Krupali Tejura MD | 7:12 AM ET | 05-09-2007

Good Morning Leroy

Well it seems I have become yet another of your "faithful following"! LOL

My travel experiences and desires to travel have seemed to be in total opposition to yours.. though admittedly I did not travel for work back then... but I also had no real desire to travel either. For years and years I simply WORKED... I went 10 years without any kind of vacation at all! In teh past 35 years I have taken a grand total of perhaps just over 20 weeks vacation... and most of those have been in the last 15 years and a number of them have been in conjunction with some sort of business! :-)

What can I say... I admit it... I am a workaholic....

I will also admit... my desire to travel and see different places in teh world has grown dramatically in the last 10 years... I have also begun to travel for work.. being on several boards of directors and involved with competitive racquetball and most recently with cancer advocacy.

I have also loved fishing and would just love to have teh opportunity to fish many many places around the world... maybe some day!

So as I said... my desires seem to be completely opposite yours in that I am looking for excitement and new experiences when I travel and seldom sit still...

I guess that may also be related to teh fact my cancer experience was also at teh opposite end of my life.... I was diagnosed in 1975 at the ripe old age of 20...

I do hope you do absolutely NOTHING on this trip and enjoy the hell out of it!!

Thanks again for all you have done for all of us by sharing your story!

Sent by Ronald K. Bye | 7:22 AM ET | 05-09-2007

I'm in the middle of treatment for breast cancer, surgery is next then more chemo then radiation. I'm really hoping that i'll be finished with treatment before the end of the year. I have a tradition with an English friend of mine, we go somewhere for New Years every year, have done so for 7 years now. I don't want this cancer to take away my tradition of travel. Maybe this time i'll try Hawaii?
have fun leroy! even if it means sleeping on the beach.

Sent by Jenn | 7:23 AM ET | 05-09-2007

Get me one of those chairs with a flag on it! I too have had enough "adventure" for one life and I'm only 37. I can't wait to hear about Hawaii and the way you will tell it will be so enjoyable. Soon I'll be making my own trips, not because I'm dying but because I'm living again.

Bless you! Live it up! Have a mai-tai for me.

One of the club members,

Lori

Sent by Lori Levin | 7:31 AM ET | 05-09-2007

Leroy I am grateful for your courage and for your willingness to stand naked in a world that leaves you nake to the world that is horrified by the word cancer. This is my third visit - this time stage four. My family watched Living with Cancer and heard words that I typically write in a journal or speak aloud to a therapist. For the first time I was able to say "You know I am jealous of people who are healthy" or simply "I am afraid." But most of all, it gave my family permission to speak honestly about their fears and anger. My wish for your dear soul and your family is that you are able to swim with the dolphins, soak in all the wonderful energy of the islands, and simply be.....

Sent by Kay | 7:43 AM ET | 05-09-2007

Good morning, Leroy! Well, I guess it is still night where you are. I hope you are sleeping well. I just want to put in a few words for "relaxing" on vacation. Everything does not have to be adventurous to be an adventure. My profession is nursing educator. For the last 15 or so years, I have taught an elective course titled: "Stress Management for Nurses". In that course, we talk about how in our culture we move too fast to pay attention to subtle cues our bodies are sending us to say they need something. And there is too much noise in our world to "hear" the self-talk our own brains are constantly doing that gives us messages about how to live our lives. Often, we miss the essence of our lives by rushing from activity to activity (or doing 'multi-tasks' at one time), and by filling our ears with constant sound. I teach my students the value of silence and the power of meditation and breathing for relaxation. Since I have been in treatment for metastatic breast cancer, I have spent more time practicing what I preach. It helps me get through the awful side effects of chemotherapy, the aloneness of the radiation room, the claustrophobic capsule of the PET scanner. My last MRI was of my entire spine and took almost two hours in that capsule. I handled it just fine! I went to the beach. Really, I just closed my eyes, took some slow, deep relaxation breaths, and imagined that I was sitting on a beautiful, beach in perfect weather with nothing but gulls and ocean sounds for company. I can think of no more positive way to restore your soul and rejuvenate your poor, tortured body, Leroy, than to RELAX while you are actually on a real beach. I hope you get to one of the small islands in Hawaii: one that can still be called "paradise". Sit there, breathe, and just be.

Sent by Sandra Shuler | 8:34 AM ET | 05-09-2007

Glad you are revisiting your traveling moments. Hope you had a good meal on the flight - so rare these days. And hope you are not too tired to enjoy your first day on vacation. I also love reading and sitting by the beach so can picture you there. Enjoy and keep on letting us hear about your adventures and pleasures. Even though you said you have had enough adventures I'm confident that more are coming your way but they will be pleasant ones I'm sure!

Sent by Vicki | 8:34 AM ET | 05-09-2007

Hi Leroy,

What an idyllic image! You... stretched out on a poolside/beachside lounge chair, in hat, shades, Hawaiian shirt, shorts, and flipflops (I hope)...either reading or peacefully dozing, enjoying the soft breezes.

Air travel with what it has become these days, might just be the low point of your vacation. Luckily, by the time you catch that return flight, you'll be in such a Hawaiian state of mind, that the trip shouldn't bother so much.

Tomorrow, I've been invited to attend a lunchtime seminar on ovarian cancer, sponsored by the medical department at my last employer. I've decided to wear a Hawaiian shirt for the occasion.

Sent by Sheara | 9:12 AM ET | 05-09-2007

Enjoy every minute, Leroy. You earned it! The Discovery program, by the way, was superb--riveting and unforgettable, even for those of us who've been spared of cancer thus far. Congratulations. Rest up.

Sent by Judy MInkove | 9:24 AM ET | 05-09-2007

LeRoy - all my life I have dreaded the idea that the "Big C" would become part of my body and even though I have escaped it so far (I am 71), it could raise its head any time, I am sure. My Mother died of it at 45 so even though I do not share a story of "surviving", I am remarking on the documentary we viewed on Sunday and the courage you gave me to face whatever there is to face if and when it might come into my life or someone close to me. I thank you for making me realize that having courage to face the obstacles, the fortitude to brave the adversities and the positive feelings that one must have to fight. Thank you for communicating words that are spoken so rarely, thank you for giving us people who have no idea when it might strike, the courage to face the fight. We salute you and God Bless you.

Sent by Maxine Davis | 10:00 AM ET | 05-09-2007

Leroy,
I grew up when travel included silver service and china and sleeping berths. Needless to say travel today pales by comparison. Don't like the going and coming, but still enjoy the being there. Hope you enjoy it, too. Hawaii is very into tourism. Bet you could ASK for a flag and get one!

Sent by Diana Kitch | 10:49 AM ET | 05-09-2007

Hi Leroy,
I was diagnosed with Multiple Myeloma on April of 2002. Since then I've had a stem cell transplant, many bone marrow biopsy's, various clinical trials and many other tests.
Yesterday, May 8th, my oncologist informed me that the medication I'm presently taking is no longer holding my counts down. He offered me another trial that is quite intense. This news just knocked the wind out of me. This medication was supposed to be a miricle drug just recently approved by the FDA.
But as we know all people are different and all medicines react differenly with each individual. Up to yesterday I have always been optimistic about having this disease. Depending on my faith in God, I was never depressed and never allowed my family to get depressed. But yesterday's news just deflated me.
I had taped the three hour Discovery program and after waking up at 2:30am this morning, thinking about doing another trial, I decided to watch it. You and all the others were just great. All of you were just inspiring to the point that my spirits were lifted up to new heights.
Thank you for sharing your journey.

Sent by Bob Savana | 11:03 AM ET | 05-09-2007

Leroy,

As I write, I imagine you're getting ready to watch the sunrise. I hear in Hawaii they are spectacular. You are doing what I've I always wanted to do: go to the islands. I am hoping my husband takes me next year as a graduation gift, but if not, I'll take us. Really, it's the least I can do for someone who has and always will be my caregiver.

As a caregiver, he's done so much. Right before my diagnosis, we took a vacation to Monterey, Ca, ate well, (I highly recommend everything at Roy's) and spent some time on the beach. I was inbetween procedures in sorting out a diagnosis and my doctor told me to go as we had this vacation planned for several months. Watching the ocean and the sand and the sun, I didn't want to go home and face what news was waiting for me. One day, I melted down. I cried, feeling like a child throwing a tantrum because they cannot have candy before dinner. He was there to hold me and to remind me as he always does, he'll be there with me. And he was. Everytime.

We've been fortunate to make the trip out to CA several times since then and walk on the same beach. And I hope to return many, many more times.

Leroy, I'll raise my tea with your Mai Tai and wish you brilliant sun, beautiful vistas, and soothing waters.

Bottoms-up!

Sent by Teri Thomas | 11:03 AM ET | 05-09-2007

I will second what Dr. Tejura said, and encourage you to take a real vacation from everything, including this blog. We can all do without our daily Leroy fix while you're gone, especially knowing that you are blissfully ignoring cancer world for a little while.

Sent by Gretchen Hoag | 11:04 AM ET | 05-09-2007

Savor! Celebrate! Decompress!

Sent by Sarah | 11:26 AM ET | 05-09-2007

Leroy,

I just want to add a word about Laurie's important part in the "Living With Cancer" special. She came across as earthy and wise. Her response to E.Edward's question about why she wasn't in the video was reasoned, and her candor ("we do fight") was authentic. You might call it a real reality show - a very intellegent and moving experience which sets a new standard for what TV is capable of.
Laurie just glowed : that kind of light comes from inner beauty. You are fortunate to have her by your side...as she is for your being there.

Cathi Simmons

Sent by Cathi Simmons | 11:29 AM ET | 05-09-2007

Good Morning Leroy,

My wife died of Cancer a little more than three years ago and I can tell you for sure it has changed my life Forever!
I watched the Koppel story just last night and felt compelled to send you a message to let you know that your concerns about the lives of your loved ones are real.

I am 61 years old now and unemployed but I continue to talk to people about this horrible disease. The kids have all pretty much gotten over the death of their mother but let me tell you from experience that losing the person that was your life's Partner is absolutely the hardest thing I have ever had to get through. I don't think I will ever get through it.

I started doing my own research on Cancer during her illness and treatment so I could become informed on the best way to treat and possibly defeat this disease and during this part of my experience I came accross some interesting things that made me a different person.

When my wife was diagnosed with inoperable and terminal Cancer on Nov. 5th, 2003, we were told she had stage four Cancer in the upper part of the left lung. They called it a Neuroendicrine tumor. Prior to that she had been treated by a physician for something they called secondary Tuberculosis and they had her on strong antibiotics like Cipro and Biaxan for approximately five years. We did not know at the time that being exposed to antibiotics for such a long time not only kills the bad Bacteria in your system but also all the good Bacteria a person needs to sustain life. Therefore her Immune system was seriously compromised and unable to fight off the everyday stuff we come into contact with.

I saw you reading a book during the interview and I will recommend a couple books to you. Pick up a copy of of "A Cancer Battle Plan" by Anne Fram at Barnes and Noble. There is another book by G. Edward Griffen that I recomend and it's called "World Without Cancer". You can get it at www.realityzone.com you can order the complete vitanin b-17 package and you may learn a lot or you may not even believe it at all.

My wife was diagnosed on Nov. 5, 2003 and they started Radiation later that month, with her completing treatment on Dec, 31, 2003. She passed away in my arms at the hospital on the morning of March 17, 2004. Her last few months were horrible for her and the whole family. You talked about crying and I know what you mean, I never knew so many tears could come from my body and to this day I still shed tears over this loss.

Ever since her death it seems that my life has gone down hill. I lost my job a year and a half after she died due to my employer moving business out of California to Oklahoma. I find that seeking work at the age of 61 is almost impossible in the manufacturing sector of corporate America. I have worked in this sector all my life and they just don't want you when you get to this age.

I have a Sister who is a Cancer Survivor and her husband is also a Cancer Survivor and they are Cancer free today. Neither one of them took chemotherapy or radiation. They did however have surgery. They learned the significance of eating the right foods.

I hope you will see this whole letter in an unedited form because I see that they edit them.

I wish you and your Family the very best and sincerely hope you can be Cancer Free some day and still be very much alive.

Sent by George Swackhammer | 11:33 AM ET | 05-09-2007

Enjoy the trip Leroy...I will have a Mai Tai in your behalf.

Sent by Kerry | 12:12 PM ET | 05-09-2007

Leroy, I hope you find one of those flags and just sit back and enjoy! No computer, no phone, nothing. Let only the waves and the sun be your companions.(and of course, those mai tais!)We will be here when you get back. Best to you.

Sent by Jenene Koegel | 12:21 PM ET | 05-09-2007

Hi Leroy, your comments about travel really hit home for me. I used to savour the idea of travelling, look forward to being in a place where no one knew me and I could forget about my everyday responsibilities for a while and just focus on the task at hand, giving a lecture, attending a conference and checking out the city. But now my responsibilities are always with me (cancer) and the idea of getting prepared to deal with whatever side effect might come my way during my travels is truly overwhelming. Packing has become a two day affair for an overnight excursion and I am always on edge that I have forgotten the one thing I need to handle the side effect that will surely come on my trip. I also find travelling exhausting and crave coming home to my own bed and comforts. So far I haven't gone away on a vacation toting my cancer with me, maybe that would be different. Enjoy your time in Hawaii and thanks for continuing to write this on your travels.

Sent by estelle | 12:43 PM ET | 05-09-2007

Dear Leroy,
I had to see this blog and be a part of it after viewing the Discovery show.There should be more high profile dialogue, even if just for information and the comfort of the company we are in...This past March my three sisters, my 78 year old mother, and I left our frigid east coast and traveled to see the red rocks of Sedona and the Grand Canyon. We also lost some change in Vegas before flying on to San Francisco and making a road trip down to Monterey.We laughed, we cried, we prayed, and boy did we walk!The trip was my idea and I believe that my sisters and mother agreed because...well, let's just say that there are some benefits to this "cancer thing". People say "yes" to me more often now than before...My husband and I will celebrate 30 years of wedded bliss and three years since brain tumor diagnosis in October. I've started to plan the trip already...there's a huge world out there to see...maybe Greece this time. Aloha!!!

Sent by nancy lavelle | 12:51 PM ET | 05-09-2007

Aloha Leroy! Get the sand between your toes, that flag up, and just kick back. You are earned every moment of it.

Sent by Pat Zalewski | 1:03 PM ET | 05-09-2007

Leroy! Have a wonderful time on your vacation. I've been listening to you, reading your space, and watched you on your TV special with your friend Ted Koppel. I was diagnosed with breast cancer in August 22, 2005 (funny, I can't remember my loved ones' birthdays but that date is just right there...). I'm going to Las Vegas in a few weeks. I figure if I'm going to be a gambler, I'm going to be the best there is. As you say, the ride is no fun if you don't take your hands off the wheel and throw them over your head. Well, throw your hands over your head Leroy. You give me faith, hope, and buck up my courage. I'll have a drink for you. Thank you...for telling us all how it feels. Because it feels just like you say it does.

Sent by Maureen | 1:37 PM ET | 05-09-2007

Maybe I'm selfish but I would miss your blog terribly. Several people have encouraged you to take a break from writing it. Please don't.

Sent by helen | 2:50 PM ET | 05-09-2007

Have a great time, Leroy. Those chairs sound much better than the chairs in the chemo room, where you always get another "cocktail" whether the flag is up or not.

I'll look forward to seeing your blog in a couple of weeks - unitl then, enjoy and savor each minute.

Sent by Art Ritter | 2:53 PM ET | 05-09-2007

Well I'm thinkig by now you should have had a few mai tai's in ya. lol Right before all this cancer stuff started I took my first solo flight out of the states to Ireland. And then it was pretty usual for me to take hoppers to L.A., S.F. or las Vegas.No big deal. Then about 3 months ago I finally took a flight, by myself, to LA. To meet a fellow tumor head. Jeannie. I was really scared. I couldn't believe how scared. I felt I was not as sharp as I was before. Truth be told I'm not. But I do have a hole in my head now, so I can get away with it. So she was waiting for me at the bottom of the escalator with a sign reading GBM. We were laughing so hard. Short story long. lol It was nice to have a normal experience. We just hung out and talked about everything, except cancer.....Aloha

Sent by christine | 3:01 PM ET | 05-09-2007

Thanks for being the voice for so many people. My husband was diagnosed with lung cancer in Feb 2006. He has had his right lung removed & chemo. He doesn't want to read your blog and went to bed before the Living with Cancer Documentary was complete. He did laugh about not knowing whether to get new glasses because he had the same issue, should he waste the money. He did get the glasses & is doing good. His next scan is in 2 weeks. I am the one who needs your blog & I sure do appreciate it. Next show should include the care givers too. We just don't know what to do or say sometimes. He says he will not get his cancer back, but it was diagnosed as a stage 4 & I worry it will return & he will not be prepared. Keep up the fight & enjoy your trip.

Sent by Kathy | 5:16 PM ET | 05-09-2007

Leroy- Loved you on tv and your voice, which I hadn't heard before, was exactly as I "heard" it while reading your blogs. I will smile all week just thinking of you relaxing on a lounge chair on the big island. I love lyour girlgried or wife- I could see the humor, intelligence and love in her eyes. Have so much fun !!!

Sent by Linda | 6:47 PM ET | 05-09-2007

Happy Trails....take this time to un-plug from it all....no cell phones, no email, no blog....perhaps no nightly news. Relax, savor your time together (without the rest of us) and recharge your batteries.

Sent by Karen | 6:53 PM ET | 05-09-2007

Aloha Leroy, I wonder if, while you are sitting around the pool, or snorkeling, or drinking your mai tais, you are allowing yourself to not speak or think of cancer. I wonder, too, if you will decide to stop your blog. Has been declared cancer free now put you in a new club? For those of us who wish and hope they will someday hear they are cancer free, I hope you are enjoying these days for yourself and for us. That may sound selfish on my part, but today I'm wishing for a Mojito and feeling a bit left out. Thanks for listening, Leroy.

Sent by Ellie Algatt | 7:24 PM ET | 05-09-2007

I watched the documentary on Discovery and loved it. I hope two of my children and wife kinda understand where I'm coming from. I have stage IV colon cancer that has just come back. Like yourself I want to know the time, but Dr. Sun @ University of Penn stated you don't walk up and tell a mother of new born baby that it'll die in 99 years, so get over it. I just wanted to plan for all things that have to be done for my wife (of 32years) and children. I hope to talk more about my condition; I get chem 4 hours at one shot,then go home for 72 hrs with a pack on. Every three weeks so I do get one week a month where I feel good.

Sent by Ben Carpenter | 8:01 PM ET | 05-09-2007

I watched Living with Cancer and had to say thanks for your courage. I was diagnosed with cancer two years ago at the age of 46. Initially , I was told I had six months to a year to live. My Internist upon hearing the news suggested I " get my affairs in order "and offered me a prescription for Ambien . And just to round out the multitude of medicinal goodwill my oncologist upon first meeting told me that even though I may not be able to eat one day she had a patient who was fed intravenously at night and attended basketball games regularly. God love all the doctoes but humanitarians they ain't ! Smart yes . sensitive no. You spoke so eloquently and on point about what so many of us are experiencing . It was difficult to watch and yet at the same time reassuring to know I'm not alone . Listening to you was like hearing myself . Thank you !

Sent by Stephanie Welch | 8:08 PM ET | 05-09-2007

Aloha, Leroy. I saw Ted's documentary on you and promptly read through as much of your blog archives as possible (and am listening toTalk of the Nation as I write this. I blog as well, on Vox. I'm a Stage IV Lung cancer patient, non-smoker, with many bone mets and the largest tumor in my upper left lobe. I was on a study--chemo +Avastin, started Aug.2006 and my CT scan today showed progression, and just like that, I think I've been taken off the study. I don't know if I'll get crossed over to Tarceva (the other half of the study was Avastin + placebo--which I received--or Avastin + Tarceva since Nov 2006) or not, but now my oncologist is considering a jump to a new, semi-untested drug called Alimta (which I feel uncertain of). I have fluid around my heart and a bit in my lung as well. This has lead to the hardest quality-of-life issue for me, the topic of this post, "The joy of flight". I've been told I can fly from here (SF bay area)to Reno or Portland, Oregon...but Hawaii is out. And if I go on new medication, a cruise in July might be out (I also get seasick). So I think I can relate to that really strange feeling of going to Hawaii...for a vacation...from the "course" you've been through. It's race-day for me again, but hopefully after this I'll pass the lung function test and immediately fly to Hawaii or Australia, or someplace, just to know that for a moment, I can breathe in the barely pressurized cabin of a jumbo jet so I can check off the list some of the things I wanted to do before the next time I'm grounded. It might be for good then, but shame on me for not going to Hawaii right after the first round of chemo. Never again!

Everything you've related in your blog is so spot on, it's unbelievable. The longer I go, the less I want to read, but lately I feel I need to learn more in order to be proactive. I receive care at a huge HMO (Kaiser Permanente), which demands the patient be vigilant.

Anyway, you're an inspiration. Best wishes to you. Peace and mahalo!

Sent by Jasmin Cramer | 8:11 PM ET | 05-09-2007

Leroy-
It was funny the other night sitting in the audience. Watching as the sound went in and out I caught a glimpse of Lance sitting in a hospital bed with a small "bullet" hole in the left side on his chest. I immediately glanced over to a new friend of the club I met named Aaron and pulled my own shirt over asking, "hey, do you have one of these too?" He did. Maybe that's the badge you have to flash for the express lane

Sent by Ehren Heyer | 10:18 PM ET | 05-09-2007

Tin B over 2 years ago i found out i had cancer of the esophagus. they told me it was inoperable. my wife being a nurse she started calling and at the end of the day she found a Dr that could do the opertation. operarion.Thank you God. ihad had a gastric bypass a couple years earlier so that caused some issues but Dr carl was great and he has great people with him.
after the surgery i pushed my self to the limit to get my life back. see i loved my job dealing with all my customers/ Friends. I always looked foreward to the next day
after 10 mo of hard work i started back at work for schindler elevator.
they were great to me they started me out on light duty for around 2 to 3 mo .
well after going back to workthings were good for some time..i started getting pain from timt to time in my head. we just thought it was sinus issues. after a few days my wife took me to the hospital where she works. they were great in no time the gave me a cat scan and the dr told me he found two tumors in my brain. this was on thurs they set up appointment for friday(next day) to see surgen.
Monday morning i was in surgery getting it removed. they took out one over 4cm but had to leave one thay was 1.2 cm
just finished up ym whole head radiation 2 weeks ago and this week i go in for a new mri to cee what is going on so we will know where to go from here.
sorry for any errors i lost a lot of my ability to so things like typing etc but it is coming cack very slow
i hope you can read this as i said i had brain surgeryso take it easy on me hahaha

Sent by Tim Browning | 10:33 PM ET | 05-09-2007

Leroy,
I just wanted to echo what a great film the Discovery Channel program was. I don't have cancer. I have an extremely rare genetic condition called Hermansky-Pudlak Syndrome or HPS. While our journeys aren't the same by any stretch, there was so much in the film that I could relate to - your experiences don't just speak to people with cancer, but to all of us who battle life threatening diseases every day. Currently I am very lucky and doing very well. I'm in a clinical trial that seems to be going well - but getting there was quite a trip. There are only about a thousand known cases of HPS in the world. We have a patient advocacy group, but it's all volunteer. We don't have the funds for a single paid staff person to advocate for research - but we fight on. Our president and founder has run our organization from a table in her basement for 14 years. She was able to convince the NIH to research our disease. Together we've traveled the country trying to get the interest of bench researchers and talking to drug companies. For us, there are no specialists, no parking garages full of other members of the club. I don't know what I'd do without the internet to stay in touch with other HPS patients as none live anywhere nearby. I plan to use segments of the film (and refer to your blog) to help discuss some of the issues that we face that are so much like many that you brought up.

Enjoy Hawaii! And Thanks!

Sent by Heather Kirkwood | 12:15 AM ET | 05-10-2007

I saw the show and it was amazing. Thank you so much for sharing. I hope after the show you can use that "cancer card" to get the best tables and the fastes drinks to the cabana. I hope you don't think about the cancer, and take a cancer vacation. Now that you are feeling better, maybe you can go a whole day without thinking about it. That is my wish for you on your holiday :-)

I am 33 year old Breast Cancer Survivor (I guess, I go back for my first three month check up next week) So in the last few months, I lost 5 lbs - my boob, gained 25 lbs - chemo weight, gained 3 lbs with the addition of Betty Boob - my prothesis, lost 1 lb in my hair, gained .0001 oz in my new GI jane hair that is starting to come back. So all in all I guess that makes ahead in the game. I have more than I started with -- some weight and some wisdom. Thank you for sharing yours with the world.

Sent by Helga | 1:23 AM ET | 05-10-2007

Aloha Leroy! I enjoyed your segment on the Ted Koppel special. My final chemo treatment for breast cancer will be next week. At age 39 and with two young daughters, your message of hope has lifted my spirits.

We live on Oahu, so if you're here, make sure you get a burger from Kua Aina and a shave ice (with ice cream) in Haleiwa!

Sent by Lori N. | 2:48 AM ET | 05-10-2007

We should all enjoy the simple pleasures of life. I am a follower of this type of vacationing. My favorite vacations involved relaxation time.

Enjoy yours Leroy.

Sent by Betty in Germany | 3:24 AM ET | 05-10-2007

Leroy, I've commented before and I don't know if you get them or not so I might be talking to some air right now, but at least I'll get it off my chest. Saw the Ted Koppell special. I never heard you mention a caretaker. I WAS a caretaker. I have been getting your blog and wrote to you several times when my husband was sick. I guess you could say I'm jealous of you. My husband NEVER was able to even drive after his first chemo much less work, take overnight trips or go to Hawaii. It took every ounce of energy he had to get to the doctor each week. He did chemo and then radiation on the brain at the end because it spread from the lung to liver to bone to brain. Nice, huh? He also became a skeleton which I noticed you aren't. Have a good time in Hawaii. I wish I had that opportunity. My husband passed away on January 3rd and made it 9 months from diagnosis. He never talked about it, but knew he'd beat it. He did not have any quality of life after the first injection and his were 6 hours like yours, but divided up over 3 days every 3 weeks. As the caretaker, it was rough so I wondered why you didn't mention what they did for you.

Sent by Betsy | 11:01 AM ET | 05-10-2007

Leroy, Enjoy, and I hope no one has your cell phone number. Have a mai-tai for me! Cheers, Tom

Sent by Tom K in Sydney | 6:26 PM ET | 05-10-2007

Leroy - congrats on your trip. Hope you have fun.
3 months ago I was given a clear scan from stage 3B lung cancer,again. I have been battling this for 3-1/2 years. 3 times I have been given a break from chemo (the longest time being 6 months, which is fine it gives me a much needed breather. We just got back from Oregon (a free for now celebration). God has bless me in so many ways & looks like he has blessed you! Take care. I look forward to your blog. Fay

Sent by Fay | 6:46 PM ET | 05-10-2007

Leroy, I just wanted to let you know I am a colon cancer surivor and watched your show the other night. It made me sad and happy but mostly your story gave me hope. I learned we are own advocates. I am a stage 4 survior and was young with my dx. I am feeling well and it is tough to get info regarding my future. The show told the patient's stories and that is what I liked. i enjoyed waiting for appts and tests was like water torture... Keep writing and I will be reading and learning as your write. I was able to make it to Hawai as well in FEB. I plan to go back again soon. My favorite place as well. Thank you for sharing. Kathy

Sent by Kathleen M. Hitchcock | 8:35 PM ET | 05-10-2007

Mr. Sievers,
My 40 year old sister is also dying of cancer, colon cancer. She is doing a blog too and her link is http://blogs.chron.com/cancerdiva/
I have seen your show with Mr. Koppel and I think I see Terry's strength in you and many other cancer patients I have known(my mom and my dad).
Our father died 3 years ago of colon cancer too and it runs in our family. But anyway, I wanted to tell you thank you for what you do and keep your positive nature for others out there to understand this disease and it's effects on all that it touches. You are an inspiration to me and many many others, just as my baby sister.
God bless you

Sent by Steve Hayes | 10:56 AM ET | 05-11-2007

Hello Leroy,
I confess that, prior to the television special, I did not know your name and yet I feel comfortable addressing you by your first name. I am a breast cancer survivor (diagnosed 2004) and I immediately adopted you as a brother because we all belong to the same family, the one to which no one wants to belong. I was touched by the straightforward, honest, eloquent, and soul-baring way you express
yourself and describe your journey with cancer.
Today you were talking about fear and, of course, we can all relate. I have been supposedly cancer-free for the last 30 months yet I am resonably sure that it will one day come back to get me. Although it will surely win that final war, I am determined that it will not win all the little battles. I will not live each day thinking about the day it returns because then all of my days are tarnished. I want to share a quote from philosopher Horace Kallen, "There are persons who shape their lives by the fear of death, and persons who shape their lives by the joy of life, the former live dying; the latter die living. Leroy, lets die living.
Linda,
Chatham, Ont.

Sent by Linda Dawson | 1:09 PM ET | 05-11-2007

Leroy,

24 years ago, I was diagnosed with an Adenoid Cystic Carcinoma. I was only 34 years old and father of a ninth month boy.

In April 2000 I was diagnosed with a brain tumor stage III anaplastic mixed glioma. Two years of chemotherapy and everyday sharing your fears. Every visit to the Oncologist buys me six months of hope.

The battle against cancer is cruel on the human mind.

I enjoyed your interview with Mr. Koppel and I admire you for living with cancer without loosing your self-esteem.

Sincerely,
Leon Jinich


Sent by leon jinich | 11:03 AM ET | 05-13-2007

Hi Leroy, I have not seen the special,but, am looking forward to seeing it. I have cancer too. Thanks for sharing your story and I know it has helped many " cope" with this disease. It took a lot of courage...thank you! Sincerely, Cindy Estes

Sent by cindy Estes | 8:49 PM ET | 05-13-2007

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Leroy Sievers

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Leroy Sievers in the Ted Koppel Documentary

A Ted Koppel documentary focuses on his friend Leroy Sievers' "My Cancer" blog and the response it evokes.

 
 
 

About 'My Cancer'

My Cancer will be updated Monday through Friday with posts and commentaries from Leroy Sievers. A journalist for more than 25 years, Leroy has worked at CBS News and ABC News, where he was the executive producer at Nightline. You can follow his story through this blog, his weekly podcast and his monthly series on Morning Edition.

 
 

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