Haunted by a Phantom Future

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The following essay is from the NPR My Cancer weekly podcast:

People who have lost a limb say that sometimes they can still feel it. They feel phantom pain from an arm or a leg that's no longer there. Clearly the brain, or at least some part of it, didn't get the message.

As a cancer patient, I've lost little bits of my body. Some pieces have been cut out, some burned, frozen, radiated, or poisoned with drugs. We hope most of the tissue that was killed was tumor cells.

And I have a form of phantom pain, too. I have a phantom future. I've always been a fan of tortured metaphors, but let me explain. The day before I was diagnosed almost two years ago, my future was wide open. Okay, I was getting older, a little too old to start a whole new career. I have a mortgage and obligations, so I couldn't just grab a backpack and head out on the road. But you know what I mean. There was still plenty of life out there to be lived. I had options.

A day later, all that changed. My future was cut off. I had serious cancer. In those first few weeks, I was told I had six months left, then 12, then 20. None of those prognoses really matter, except to scare the heck out of you. But they had one thing in common. They curtailed my life. My death, whenever it came, was most likely going to be much sooner than I expected. The unlimited horizon I considered my future? That was gone.

It's funny. I still think it's all out there. I think about jobs and career paths, things I want to do, things I have to get done. I plan ahead. And then, of course, I'm reminded of the reality of my life. My death from cancer doesn't appear imminent. But I know I won't be able to do some of the things I want to. For one thing, my body has been pretty beat up. I'm just not physically up to it.

When I find myself thinking two, or three, or even more years ahead, am I being silly? Feeling the phantom pain of a future that's no longer there?

I don't think so. The alternative would seem to be just giving up. Telling yourself you have no future, so why even bother to dream? That really is the road to an early death.

On the other hand, I need to be honest with myself. Cancer has stolen at least some of my future. Of course, a lot of people didn't expect me to live this long. Who knows how much time I really have left? I'd hate to find myself two or three years down the road with no plan for the future at all.

I guess I'll just keep planning and dreaming. People who have those phantom pains say they feel like the real thing. So my phantom future might as well feel real to me too.

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Morning Leroy,

This is a day of heartache for me. Your blog touched on all those chords, how do you hope, dream, plan? How do you not hope, dream, plan? I feel the tug-of-war sensation with dreaming/planning, and the opposite pull of how much time is there, really?

This weighs on my mind so much. About my mom too. She has stage 4 uterine cancer. But she won't talk about it. She's a "rose-colored glasses" kind of person, and was raised to never talk about her own fears, struggles. I know they are there though, I can hear it in her voice, when she yells at me about something off-the-wall, I can see it in her eyes when I see her, but when I ask her, she just says, "everything's okay, I'm fine, etc." So what do I do? I care and ache for her. She's my mom.

Well, thanks for "listening". Hang in there Leroy. (As you seem to be doing.) Thank you so much for your willingness to share this stuff, thank you for your honesty and for your vulnerability.

Take care, you & Laurie, and everyone.

Kim

Sent by Kim Blankenship | 8:03 AM | 8-29-2007

Leroy
Perception is reality...if we think it is true then it is. No one is guaranteed a future. Live today!

Sent by Patricia A | 8:05 AM | 8-29-2007

Oh, how true. Just yesterday I had an arguement with myself that went something like....When are you going to stop being so weighed down by your perception of what this disease has stolen from your future. How irrational, I tried to tell myself. More of my future may be intact than I think. Nonetheless, it does in fact feel like my future is phantom sometimes. OK, lots of times. As you say, that seems like just giving up. Your words have inspired me to try harder to win this arguement. And, just as important, I'm happy to read that you will continue planning and dreaming.

Thanks for another hitting-it-on-the-head posting.

Sent by Olivia | 8:11 AM | 8-29-2007

Dear Leroy, I don't have a prognosis but reading how others continued on past their prognosis gives me courage and hope. I am trying to plan for the future too, small goals - like collecting SS Disability after the 5 month waiting period, waiting for my daughters to find someone to share the rest of their lives with. Taking a trip with my new passport. And when I get strong enough volunteering to free medical clinic as I miss nursing. Dreams are what keep us going. Certain things don't seem practical (like spending money fixing my teeth) but others can be accomplished and enjoyed. I have now been "slashed, poisoned and will be burned" - things I never thought I would do but I am grateful to continue on. I believe there is still work for me to do here so I will keep planning and dreaming like you. Thank you for your wonderful writing. God Bless.

Sent by Vicki (FL) | 8:16 AM | 8-29-2007

I'm reading a really wonderful book right now titled, "The Anatomy of Hope: How People Prevail in the Face of Illness," by Dr. Jerome Groopman, a hematologist/oncologist. I highly recommend it. It dissects hope -- hope being a vision for how to get to the future, as opposed to simple optimism that everything is going to work out -- and why it helps us live longer.

Cancer has caused my future to seemingly be thown up into the air. Now my plans are less long-term and more single-event oriented, like finally making that trip to Paris. Finish that book. I wonder if I'll ever get back that thinking about my career and where it's going.

Sent by Jordis | 8:22 AM | 8-29-2007

Leroy,

Keep planning for the future! You're absolutely right, not planning is a form of giving up and that's just another way of letting the "beast" win. I'm a two time survivor of separate diseases. The doctors tell me I'm healthy and while I never go a day without thinking about my cancer, I don't stop working, planning and enjoying the present and the prospect of the future, regardless of how long that future really is. Anything less is admitting defeat and we simply just can't afford that!

Sent by Dave Caplin | 8:27 AM | 8-29-2007

Plan for the future, dream and be optimistic, not naive, but optimistic! Yes, the dark clouds continue to hover above us but there is also sunshine and HOPE that are there to balance it all out.

Before cancer, we weren't immortal! We just thought so!! Cancer, forcefully and without fanfare, brought our mortality front and center into our lives. Now our journey is a bit more uncertain or is it really?

I choose to be optimistic, to plan, to dream and to HOPE. The alternatives are just too depressing to contemplate and to live with each day. I am NOT naive. The dark clouds do sometimes blot out the sunshine but I do my best not to give in to the darkness.

Leroy, make your plans while tempering them with your new limitations. Dream the dreams of your future. Remain optimistic. Your future will be a phantom only if you allow it to be so.

If you have not read Tony Snow's article "Cancer's Unexpected Blessings", I highly recommend it. He talks about choices and faith. He is eloquent in writing about his journey just as you are.

Blessings and prayers as always.

Sent by Al Cato | 8:31 AM | 8-29-2007

I think you are living proof of the mind/body connection. Your attitude has surely contributed to the fact that you are still here. Here's to your continued well being.

Sent by Jennifer | 8:31 AM | 8-29-2007

Dear Leroy
None of us really know when our last day is. Those of us with cancer (I am a two year breast cancer survior) have been given a window that it might not be as long as we once thought. So its all been said before, live each day to the fullest, but it does have some truth to it. My body feels pretty beat up too, it hurts to lift my granddaughter, but I wouldn't miss those moments for 10 extra years on earth. I have my scans next month, and so I'm worried till I hear the results, but I can't do much to chance what ever the results are. I pray for you everyday, and all the people who live with this disease. Keep the faith. You know we could walk outside and get hit with a truck... a little cancer humor.

Sent by ellie wingerson | 8:39 AM | 8-29-2007

There was a Star Trek: The Next Generation episode titled "The Inner Light" (http://en.wikipedia.org/wiki/The_Inner_Light_(TNG_episode)). In the episode, the captain lives an entire life, complete with wife, children and grandchildren due to the scan of a probe that affects his neurological activity. When the captain comes back to "present time", he is shocked to learn that only a mere 25 minutes have passed aboard his ship.

When I was first diagnosed, I knew that cancer would steal at least part, if not all, of what I believed to be my intended future. I felt as though with whatever time I had to live, I needed to cram an entire life of events into it.

Almost four and a half years after diagnosis, I am still sobered by the statistics of my condition. Every headache leaves me wondering, "is it back?". But I have lived a lifetime in that span and have appreciated it far more than I ever could have before diagnosis.

Of course, perhaps it's all a figment of my imagination, being a malignant brain tumor and all I suppose impressive hallucinations are possible. But I think I'd be more athletic purely in my imagination. So I'm going to stick with having lived and appreciated a lifetime in the last four years.

Here's to all of us planning for and living to the fullest with whatever time we have.

Sent by Ariella in NH | 8:43 AM | 8-29-2007

Leroy

This is one of your all time BEST posts!!!

ALWAYS keep on planning and DREAMING!!!

It matters much less whether those plans and dreams are ever realized.. it only matters that you LIVE what ever life you have left.. and who knows what that might be!

Things can change in a moment... a new treatment or drug or what have you and poof you have another year or two or more

I think if you ever stop planning and dreaming... more than "giving up" (which I dislike that term intensely) you simply stop LIVING and that is indeed when you begin to die!

There does come a time when enough is enough... and that point does NOT equate to "giving up".. it is when all else is depleted... the intensity of the disease, pain, wrath taken... a point at which we can peacefully cross over to the other side and begin the next journey.... and I do NOT consider that "giving up"

So for the foreseeable future Leroy... just keep on planning and dreaming and LIVING!!!

Sent by Ron Bye (NH) | 8:45 AM | 8-29-2007

Good stuff. As I've said before, I am in a clinical trial for recurrent prostate cancer. I'm retired, with a pension and modest TSP and SEP accounts. My investment horizon is age 70, eleven years hence. The trial seems to be working, but you never know. I could legally start pulling the money in six months, and one might be tempted in this climate of market volatility to put everything in something more safe.

With chemo and its daily travails six months behind me, my future is enjoying today, this weekend, a trip next month, some more scans next February, and a nest egg against some health scare or other emergency in 2018.
If not for me, for loved ones.

A cancer acquaintance with a poorer prognosis bought an Escalade last year, and he's put a lot of miles on it. I stick with the 2000 Accord sedan.

All subject to change. Keep the faith, all..

Sent by Jack Burrington | 8:54 AM | 8-29-2007

You know, we have a dear friend who is preparing for her 92nd Birthday on the 12th of this month. She has enjoyed great health and a really good constitution. She is fully away of how lucky she is. Still drives he own car (only for short trips to the local stores). She is a joy to be around and go places with, yet every once in a while she seems to stop short and realize how old she truly is and wonders, out loud, how much longer she will have and why she has been so fortunate.
I, who am 15 yrs her junior, wonder what she feels like and how she can be so cheerful, happy, and active, when she never know what each day may bring? She knows she can't live forever.
Leroy, aren't we all in the same boat? None of us know how much time we have left. What we do know is what we have today and how we deal with it. We still have control of NOW. Try to only think of tomorrow as the future and let's make it worthwhile. Small things still bring joy and we must focus on them. I am frghtened, yet I got such joy from a long phone call with my youngest brother yesterday (61), amd I also talked with my sister in law, who has been battling lung C for over two years now and still sounds so interested in what is going on around her. She lost her husband, my husband's younger brother to C two weeks ago.
What I am trying to say, I think, is that ATTITUDE seems to be the key. Otherwise, we simply "give up" and wait for the Grim Reaper to come.
I don't think I shsll mske it that easy for him. Will you? I don't believe so.

Sent by J C Rakowski | 9:04 AM | 8-29-2007

Dear Leroy,

Just keep dreaming. Your phantom future may very well be real. What you are doing now is VERY REAL. Your insights are profound. Your words are healing. And you are loved and adored on a moment to moment basis, more than you will ever know.

Prayers to you and Laurie........Sasha

Sent by sasha | 9:12 AM | 8-29-2007

This hit home. A woman I know who had supported me through my cancer struggle has just been diagnosed with a recurrence of her cancer. I am, as far as I know, cancer free but I have a checkup today and have the usual nerves about getting bad news.

I've been thinking more and more about the future lately, and right now I have no reason to think I shouldn't. But I don't take for granted that I have as much time as I hope, and I certainly don't expect I'll live into my 80s, which I was pretty sure of before. And my cancer battles (I was diagnosed with two cancers at the same time) have left me more easily fatigued, as well as with some other disabilities that have already put a permanent block on some of the plans I once had.

I think the important thing is that we do keep dreaming, though. It gives us hope for our lives.

Sent by N.R. | 9:13 AM | 8-29-2007

Today's message was great . . . having lost my husband to cancer in February, I vividly remember the day he was diagnosed . . . I agree whole-heartedly you must focus on the future. We never know when God wants us home. People always say our family was blessed to have 1-1/2 years to say goodbye to Steve (died at 57) and yes we were, but in other ways it was very hard. Chemo and Radiation many times left him feeling like he was not "living" life.

I did not know of your site prior to his death, now I find it very interesting as I reflect back on our journey.

My thoughts and prayers are with you and your family.

Sent by Kathy Hanlin | 9:34 AM | 8-29-2007

I heard Mr. Sievers essay this morning(AUG 29) on my drive into work and it was as if he was speaking my thoughts and worries. I was diagnosed with Kidney cancer a year ago last April (on my birthday). The future has been one of my biggest concerns; my family's certainly, but also allowing myself to think about the future and planning for one.

Sent by Charles Pennington | 9:35 AM | 8-29-2007

Oh Leroy, your words brought tears to my eyes today. I hadn't actually heard you on the radio for a while - that was a nice treat. But this idea of a phantom future - it crystallized my own thoughts on cancer and my future. Some would say that I'm silly to worry about not having much of a future - no mets, "cured," whatever that means, of breast cancer - but I can't shake the feeling that I might not make it quite as long as I expected. So while I definitely plan for the future, even years ahead, a little dark cloud sneaks in now and again, reminding me that I just might not be there for my daughter's wedding.

Sent by Gretchen Hoag | 9:43 AM | 8-29-2007

I agree that that's the only way to live ones' life. I just saw an article recently about a woman in her 90's who'd just graduated from college. Many would argue that that's a waste of her time and money, as it's unlikley that she'd live long enough to get any financial return on her degree. I think that it's obvious that the destination wasn't her goal- the trip was. Having metastatic disease puts more of a question mark in the forefront of our lives, but I like to think that continuing to be hopeful about the future, and acting in a way that assumes that we have a future is good for us. If I didn't think that I have years ahead, it wouldn't make sense for me to do what I do- start a small business, exercise regularly, think about going to Europe in the next year or two. I'd much rather dream, too.

Sent by Nancy K. Clark | 9:49 AM | 8-29-2007

Leroy--considering that we all die anyway--dream, plan and do whatever you damn please!

Sent by Vicki. | 9:52 AM | 8-29-2007

Planning and dreaming ... whether you're healthy or not ... should be a part of your life. When my husband was diagnosed last year, we had to cancel a return trip to Hana, Maui. During those many months in the hospital, I wasn't able to think about planning the return trip - we were in the fight of our lives - but I could certainly dream about the day we would once again be in that lovely place. Those nights when our doctors didn't think he would make it til morning ... my Hana dream gave me hope. And now that he is in remission and able to walk again, our Hana dream is coming in stronger. Still not quite ready to begin the planning, but I'm not giving up on that dream. Never will.

Sent by Dianne in NV | 9:54 AM | 8-29-2007

Silly thinking about the future, no. It is human nature. My friend just diagnosed with bladder cancer is on a roller coaster right now. Her future before involved being a grandmother for the first time early next year. Suddenly she is frozen in time. I try to help as much as I can, but sometimes it is like she is on fast forward, and I just want to hit the pause button.

Any suggestions besides just being there? It almost seems like this is a rerun from my sisters diagnosis. The only difference, I am not as intimately involved and for my sanity that is probably good.

Sent by Sue Chap | 10:01 AM | 8-29-2007

Hi Leroy and friends,

Your post rang true again.

These last few weeks I have been thinking about the fact that my body can't now, and probably will never be able to do so many of the things that I did before, or would like to do in the future. Sometimes I get sort of wistful about that; sometimes I get sad.

Since I know I will see 3 docs for post-radiation check-backs next week, I wonder if I should even bother to schedule PT appointments to help get my strength back. Should I wait to see if it will be worth the effort? I don't mean to sound depressed because I'm not. I'm just trying to be realistic.

I know I will have some amount of future. The question is how will my battered body handle that future, no matter how long or short it may be?

The only thing I know for sure is that the better I feel mentally the better I feel physically. The identical aches and pains bother me a whole lot more on down days than they do on up days. So I'm going for staying more positive and feeling less pain. It is really my only viable choice.

Thanks for being out there everyone. Here's to the future.

Sent by Laurel M. Jones | 10:16 AM | 8-29-2007

I used to be ambitious, and forward-looking, and eager to get to the future. That was before inflammatory breast cancer and all that that implies. I, too, feel that phantom future: making plans that I don't really think I'll be able to fulfill. But I suppose that's not different from real life, is it? I do indulge much more in the present, and the very near future, so my husband and I seem to be having an inordinate amount of fun. We entertain, we travel, we go mountain biking, we drink lots of red wine, and we certainly don't work too hard. Maybe that's how we should be living regardless of my health. But I refuse to thank cancer for the dope-slap that forced us into this extreme 'carpe diem' lifestyle.

Sent by Joan Jones | 10:21 AM | 8-29-2007

Dear Leroy, My husband and I met when he was diagnosed "terminal" and though we all know that we are terminal in life since no one gets out of here alive, I never really fully understood the finality until listening to you this morning on NPR.
His cancer recently surged and once again we were told there are no options.
I understand better than ever the concept of fear that goes along with losing the hopes of dreaming.
I've worked with hospice patients and have worked in the hospitals and I've always contended it's better to know than to not know, but after living with my husband and his fears about the loss of his future, I'm not sure knowing is such a grand idea.
Keep your hopes and dreams alive, for when you stop is when you lose.
May you be blessed and continue to write and live as happily as you can.

Sent by debb harelik | 10:22 AM | 8-29-2007

Hello Leroy and et al..
The ever elusive future... it is all so tricky..I saw my onc yesterday and he wants me to enroll in a clinical trial for another year of treatment because although my cancer hasn't meted yet, he said that there is 40-50% chance my cancer will return...I am 39 and thinking about quality of life vs quantity of life. The past year of treatment curtailed my life immensely, couldn't run and hike and be the very active person I am. As I contemplate whether or not to be sick from the attempted cures for another year, I can't help but think that it may not be worth it. I do't want to live what remains of life sick from treatment. Do I live longer nauseaous and fatigued unable to live my life or do I roll the dice and live my life until I am no longer able to?

thanks for the post today...

Sent by Yvette | 10:26 AM | 8-29-2007

Your posts are inspirational Leroy. I'm the cancer center manager for Revolution Health (http://www.revolutionhealth.com/conditions/cancer/) and do a cancer blog of my own (http://www.revolutionhealth.com/blogs/carolynscancercorner). You've been through it all and manage to have a sense of humor and calmness. Perhaps that's not how you really are, but you must make others feel better. Please don't stop writing and keep fighting.

Sent by Carolyn Hall | 10:30 AM | 8-29-2007

Well, I don't agree that the only alternative to having dreams for the future is just giving up. There is the Buddhist concept of putting both future and past out of your mind (or trying to) and living more fully in the present, with heightened awareness of and appreciation for every bird twitter, vivid green leaf or baby's smile.

Of course, we're all human and bound to have regrets. I wanted to be a grandma! And fully expected to one day be a crotchety old 90-year-old crone. Guess I'll have to buy the purple clothes and turn eccentric now -- 30 years sooner than expected. That could be fun.

Sent by Doris | 10:46 AM | 8-29-2007

I spent the day yesterday making business plans; I would stop in the middle of a projection and walk away. So I decided I would just call everyone with your cancer joke; everyone laughed but they said the one running saying just one more chemo treatment was me...so I went back to my business plan. I have this moment, right here, right now. Isn't that what we all truly have? I stil have a few more people to call....and a future that promises hope - if not for me - at least for another living with cancer who will benefit from the trial study I will be undergoing.

Sent by Kay | 10:57 AM | 8-29-2007

Good Morning Leroy,
I loved your words of wisdom today. The truth is we are all just one heartbeat away from our new destination, whether we live in cancer world or help those who do, we all need to take one day at a time. Keep up the great work Leroy, inspiration and good outlook is what keeps us all going. Hugs to you and your family.

Sent by Teresa in WV | 11:04 AM | 8-29-2007

A cancer diagnosis really made me understand that there are no guarantees in life, and that my life might be shorter than I hoped. I have had friends struck down horribly and unexpectedly at young ages, too, so while they were examples of that concept, they didn???t survive to comprehend it and perhaps change aspects of their lives.
So have you found that this knowledge- that you may not be around into your 90???s--has focused your energy on packing new things into your days to ???live life to its fullest???, or have you found that it makes you appreciate the smaller things in your everyday life? Or has it not changed much about your life (other than adding in the interminable medical appointments and procedures)?

Sent by Maggie | 11:19 AM | 8-29-2007

Leroy, Thank you for a beautiful commentary that so touched me. Ten years ago I was diagnosed with lung cancer ??? a tumor the size of a chicken egg lodged in my right lung. I was 49 years old, and it was my third cancer. My entire right lung was removed.

I fully and deeply understand what you mean about the horizon disappearing. I went home and prepared to die, but I was bound to have fun while I waited. Those of us with the wherewithal to anticipate and prepare plan for the future have certain visions of how our lives will unfold. In my case, I was just beginning to anticipate the joy of retirement. Coming from a conscientious blue-collar family, I had saved and prepared, but still felt pangs of fear for those uncertain years. I wanted to see my daughter finish her education. I wanted to see my grand daughter grow up. I wanted to be there to care for my husband who is 15 years my senior. Suddenly, I felt that I had been robbed! I knew I was lucky to have had half a century, since relatively few in this world have such longevity. But I had PLANS, too, doggone it! Now I had to start all over with NEW plans.

Oddly, once I accepted the odds, life seemed so much easier. Rather than planning for a long and nebulous future, now all I had to plan for was my imminent death. It lifted a great degree of responsibility from my mind.

I had been planning to see the world in my retirement. Now it looked like I wouldn???t make it to retirement. So I sold my life insurance in a Viatical settlement, and started to travel throughout much of the ancient world that I had ached to see for years. Fortunately, I kept my job, health insurance, and retirement savings. Because, three years later, I woke up and realized that, while I was out of insurance money, I was still alive!

And here I am, now ten years past the Big ???C,??? still living a full life. I had to update my life plan yet again, and believe it or not, that was kind of difficult. Believing that you are going to live is a much more complex matter than ???knowing??? you are gong to die. But I still wake up every morning, look out the window, and reflect how beautiful my live in this world really is, and not a moment passes that I am thankful.

And thankful to friends like you, who put into such eloquent prose my deepest feelings. Thanks again.

Sent by Donna Jean | 11:21 AM | 8-29-2007

Leroy - thanks, I really enjoyed yesterdays "Tumor Humor". As for the future...the future will take care of itself. Worrying about a reoccurence didn't stop me from having one - yet here I am living my life - enjoying my life. I use mindfulness to try to focus on today - one of the greatest - if not most difficult lessons cancer has taught me.

Sent by Beth | 11:21 AM | 8-29-2007

But Leroy,
Losing the future has its benefits. You get to live fully today. And if that isn't enough, it's okay to sneak a peak at tomorrow, but that's as far as it goes.
I just went from stage III to Stage IV, but today is a good day.
Allen

Sent by allen | 11:26 AM | 8-29-2007

Hi Leroy and all

The notion of the phantom future really struck a chord ??? but maybe not in the same way is it hit you. Within hours of realizing that my future wasn???t going to be what I???d {rather vaguely) planned, I was planning the new future that had been rather abruptly thrust upon me. At the time my brain was swollen, my cancer was very much present and without intervention (which was thorough and [so far] effective) could have killed me in a time-span of 2 seconds to 2 months. Ten months later, like the Eveready Bunny, I???m still drumming along ??? if not at full speed. The difference between me (us)and the bunny is that I know my batteries will run out. Since I???m functioning well and limited largely only by fatigue, I know I???m better off than most ???especially those of us with brain cancer. I???m caught in the paradox of the ???phantom future??? which teases me with the idea that I can go on like this (or better) indefinitely, and the data, which suggest that I probably, at best have another 2 ??? 3 years before decline sets in and imminent death becomes the reality.

But this is a future nonetheless. And there are a few people with glioblastomas who continue to make it for a good deal longer. So how do I plan and for what do I hope?

Like you, Leroy, and many of the rest of you, I keep on keeping on ??? and for more than ???One day at a time,??? ??? though I am grateful for each day as it comes. I find myself in the boundary space between the long-term, medium-term and the immediate. It???s a constantly interesting, if somewhat challenging (for me not really frightening space, except occasionally). It???s challenging because I am confronted with the realities that ???If not now, when???? and ???what am I really invited to do with the life that I have and the conditions under which I have to live it???? Over the past 10 months I have been powerfully confronted with the the twin questions: ???what does the end of life have to do with the ends of life???? and what do the ends of life have to do with the end of life???? For some years, without using these words, I had been thinking about them. My cancer has given me the opportunity and challenge to work on them with greater focus for whatever time I have left - 2 seconds or 22 years. It helps me and others to have a faith commitment (in my case both Christian and universalist) that supports and indeed urges this approach.
Yesterday, I spent several hours with a fellow glioblastoma survivor who has just gotten over being cut and is in the process of being burned and poisoned. We agreed that in some ways having these usually deadly cancers has been a blessing (I know this is heresy on this blog ???what can be good about cancer?). But it has thrown us both into direct confrontation with our life commitments in ways that had not been the case before. We see this challenge as a blessing, even though there is a great deal about cancer that certainly is not. We???ve both had to give up a great deal that was open to us before cancer. I am not talking about this as ???count your blessings??? hokum, or ???adjusting??? to a ???new normal.??? We are not machines that need periodic adjusting. Nor is there anything about this that is normal. Rather, it is a matter of seeing, as most in this ???blogmunity??? have, that for every future that is ripped away, there is another that is given that has its own challenges and opportunities, if only we are able to discern them.

Like ???tough love??? There is also ???tough hope.??? Sometimes, as with us, it can be very tough indeed.
But it is still hope. And it can continue to inspire us to do what we can with what we have and perhaps even transcend its limitations.

Vaya con Dios,

John Shippee
Atlanta, Georgia

Sent by johnshippee | 11:29 AM | 8-29-2007

Hello Leroy,
THis is my second post, and I hope I do not sound inane. I am extremely lucky, as I have, to the best of my knowledge, good health. I have been diagnosed as of last September, with high blood pressure, which I take a low dosage of medication. It is controlled and nicely so, but it could be a precursor of something worse and I'm reminded of that ocassionally. I'm adopted, you see, so I've no knowledge what so ever of any REAL family medical history, I was adopted at birth. I do think though that it is importtant, as you've so eloquently stated, to keep planning for the future. I'm blessed, I have a beautiful, devoted wife, five children and two grandchildren, so I agree with you and others here, let's keep planning for the future. My best thoughts go out to you sir.

Sent by Charles Willingham | 11:36 AM | 8-29-2007

Good morning Leroy. It's a beautiful metaphor, and not that tortured. I got it right away. I agree with JC Rakowski up there. She put it beautifully. I'm gonna say it again "None of us know how much time we have left. What we do know is what we have today and how we deal with it. We still have control of NOW. Try to only think of tomorrow as the future and let's make it worthwhile. Small things still bring joy and we must focus on them." I have found that a balance between blowing all my money and doing wild and crazy things, and saving prudently for the future, is a fine line to tread but it keeps me in today, it keeps me hoping, and it keeps me happy. I am in the moment. We live longer than the generations that came before us, and in our collective older age,the numbers that are afflicted with cancer are a huge, huge phenomena. Be happy today, it's beautiful!

Sent by Alycia Keating | 11:36 AM | 8-29-2007

Re: Phantom Future
I believe in the amazing power of a positive attitude. Ten yrs. ago I found I had colon cancer. Five yrs. ago I was expected to die in surgery when they removed 70% of my liver. Two yrs. ago I was told I had less than 1% chance of surviving 24 months. I'm a stage 4. In 2006 I consumed 8 months of chemo for nodules in my lung.
As of now I've had no sign of cancer for the last 13 mo. and my Dr. doesn't feel the need to see me until Dec.
I simply will not accept cancer taking control of my body. Call me naive but I have plans for the next 10 - 20 yrs.
I'm in the middle of building two airplanes, each of which would take at least 5-10yrs. I look forward to flying both. I am currently 72yrs. old and to me that nothing more than a man-made number. I do believe that not allowing myself any stress or negative thoughts, that so powerful positive attitude, has tremendous influence over the body's immune system. I works for me.
Roman Bukolt

Sent by Roman Bukolt. Madison, Wi. | 11:47 AM | 8-29-2007

Dear Leroy,
As a caretaker to my husband,you have echoed my thoughts about his future. To plan or not to plan, that is the big question. I believe that not to plan is to give in. He believes in deciding things on a day to day basis. Which one of us is right? I do not know. He never was much of an advance planner and I was one. In times of stress, people become more of who they were before. If you were always a planner and dreamer, continue in that vein. It's worked for you before and it will work again.

Sent by Elaine | 11:50 AM | 8-29-2007

Tim McGraw's song "Live like you were dying" seems to fit todays blog.

Burge and I continued to buy clothes (one's he could wear in the hospital) plan the farm work and talk about our children's schedules even in the darkest moments. It was the only thing that kept us both going. Of course, we also used our heads and didn't buy boats, campers, etc. I noticed that his friends began to free up their schedules and give their families more time, buy "the car" they wanted, etc. which I think is important. As one friend said, "I decided this wasn't a dress rehearsal, we are all going faster down the path to death...Burge was just going a little faster than the rest."

Praying for you Elise.

Nikki

Sent by Nikki | 11:50 AM | 8-29-2007

"Get busy living, or get busy dying"

-Tim Robbis as Andy Dufresne in "The Shawshank Redemption"

Sent by Scott Fertig | 11:59 AM | 8-29-2007

Dear Leroy,
Great post today! Until cancer slithered into my life I felt as if I had decades left. I was 40 when I was diagnosed. Now, 18 months later, I realize I am mortal, I will not live forever, and because of cancer it is uncertain how long I will live (stage IV unknown primary with mets to pelvis, abdomen, liver & lymphnodes). One thing is certain however, I WILL LIVE! Don't get me wrong, I have my moments and I am in pain, but by and large I feel positive. I am so lucky to be surrounded by an unbelievable support group, I am blessed. I am off to see a specialist in Nashville, I still have hope. My prognosis is just a statistic, I am a person! One positive note on getting a crummy prognosis, it gives me a target to beat. In the meantime, I just keep living everyday to the fullest! I may not have decades, but I'll fight for every extra day I can, one moment & memory at a time! Peace to all.

Sent by Martie | 12:10 PM | 8-29-2007

I read your blog every-day Leroy, and I love your thoughts. My wife is now waiting to die; we're at home with Hospice and I am her primary care-giver. Our future together is cut off.

But I cannot live there, or I'll miss my wife here. And I still have a future here - we talk about it sometimes, what I'll do after she's gone - with the house, with my career, with the cats, with my dream of hiking that was curtailed when she was first diagnosed 4 years ago.

She has a future in heaven too, and we've talked about that. That she'll intercede for me, and she'll save me a place for when I join her. But we don't live there; we continue to enjoy what moments we have now when our hourly roller-coaster ride allows us, and that's enough - that's living.

Sent by Alan Cardenas | 12:16 PM | 8-29-2007

Leroy,

For what it's worth, you came to the right conclusion. Forgive me if I am repeating myself, but a lovely friend of mine died of BC several years ago in the early spring. But not before she planted flowers she KNEW she would never see. And she didn't, but the rest of us did.

Sent by Diana Kitch | 12:17 PM | 8-29-2007

Hey Leroy,
If you see even the slightest, most remote semblance of a path, take it. Keep planning, my friend. Cancer can take pieces of us physically, but it is not allowed to take any pieces of our dreams.
stay safe, stay strong,
Lance

Sent by Lance Carlson | 12:33 PM | 8-29-2007

When I watched you on television with Ted Koppel, I contemplated the title of the show: "Living With Cancer". I realized then that is exactly what I am doing. I am living with cancer. Not waiting to die. In past generations, the diagnosis of cancer often arrived so late and the medical resources were so few that the end was clearly in sight. Now, we live with cancer, sometimes for many years. Sure, our lives are different, involve a great deal of struggle, and we don't always feel good. But we are living and living means making plans. Living well means having dreams. So, Leroy, you have hopes and dreams because you are not waiting to die. You can do that another time.

Sandi from Illinois

Sent by Sandra Locus | 12:35 PM | 8-29-2007

Just months before I was diagnosed with breast cancer, Hurricane Katrina came ashore in my hometown. I live less than a mile from the beach. Contrary to popular belief, Katrina landed in Waveland Mississippi ( not New Orleans) ...with 160 mph winds and a 40 yes 40 ft tidal surge...we lost our entire town ! I learned then that the reality we think we know is hardly reality...it can change any minute. As I and my little town struggled to understand why we had lost EVERYTHING and listened to the people of New Orleans cry...I understood that I cannot rely on a future that may not happen. I have to live for what I have now. Cancer may some day end my life, but it will not take away my hope. Hope for a longer life, a fuller life and hope for all of us to live happy lives. By the way, thanks to all of you who prayed for us, sent money and help..today is the 2 year anniversary of Katrina...we are still here!!!

Sent by Liz Zimmerman | 12:57 PM | 8-29-2007

I cried listening to you this morning. It is too close to home. I finised the treatment for breast cancer last fall.
Phantom Future is such an appropriate words for me now. Born in a family of longevity, I am the first one to get cancer. Before the diagnos, my future plan included my 85th birthday. But now I am 55 and I can tell that the chance to be able to celebrate my 85th shrank considerably. But I can not give up my life. Phantom or real, we have to dream on until the last day.
Leroy, dream on and we will celebrate our 85th. Thanks for your insight.

Sent by Missy Steppler | 12:59 PM | 8-29-2007

Diana:

Thanks for the poem.

Bob A.

Sent by Bob A. | 1:04 PM | 8-29-2007

Leroy!

We heard your broadcast this morning on our way to treatment. While we thoroughly enjoy reading your articles, it was a treat to hear your voice -- a welcome, soothing treat.

With regard to making plans:
Because of our careers, we've often joked that we seem to make plans so that we'll have something to do in case no emergency comes up. *grins* It's served us well over the years and has certainly made dealing with this cancer a little easier.

Lastly, I, and many of our generation never expected to see the turn of the century, or, more precisely, we expected we'd destroy the planet before then. So, when I think about it, I've already been alive seven years longer than I'd thought I'd be. *shrugs*

susan> ...or I should say 'solar susan." Good to have a last day of radiation! And thanks for the idea!

Laura> we'll be telling that joke a lot around here. Thanks for that!

Wishing us all the best *tosses three coins in the fountain*

-dp

Sent by dp | 1:23 PM | 8-29-2007

Your essay this morning really stirred up a lot of thoughts that had been sort of floating around in my mind.

I'm 60, and happy to say that.

Since my cancer was diagnosed not quiet two years ago, my expected remaining life span has gone from not more than six months, to one-in-seven that I'ld make it three years, to a 70% chance that I'll go five years without a remission.

All along, I've been telling myself and my wife and kids that I could step in front of a bus tomorrow, so that the numbers really don't mean much. The facts are that I am going to die, sometime, from something, and that, unless I am prepared to take my own life, I can't know when or how death will come.

After I was diagnosed, when a decision had to be made, with full knowledge that the experience was going to be unimaginably ugly, horrendously expensive, and unlikely to save my life, I could not refuse the recommended treatment for my cancer. I guess I'll always wonder whether that was really courage or cowardness. Given all the cicumstances, it was not an easy call.

I tell myself and the world that I made the decision I did because my kids expect the old man, if he's going down, to go down fighting. That is a noble explanation and it is true enough that I can live with it.

I now realize that it isn't the whole truth, though. It is also true that when push came to shove, somehow I could not give up on the idea that I had some sort of individual future. The old ego was desperate to survive on almost any terms.

Fighting to live seems in some sence selfish, and thus not quite as noble as fighting so one may be remembered as having died bravely. When I didn't die as forecast, as others were doing all around me, I actually felt some guilt, which I worked through by convincing myself that some good purpose would be served by my living.

I also had to adjust to the fact that in deciding to fight, I had committed myself to some sort of a future, however "phantom." In this sence, living with, say, the possibility of remission, and the certain suffering and possible death that would follow, is just the price we pay for living. Now that I think of it, maybe the decision to fight to live, even though living means living with that shadow always over your head, is itself a brave thing.

Anyway, all such musings aside, now, nearly two years on, miracle of wonderous and mundane miracles, I woke up this morning, kissed my wife, drank some coffee, walked my dog, and am listening to jazz while I write this. Once I'm finished here, I plan to mow the grass and maybe pick up my older gandson after school. Tonight, I hope, I'll watch the moon rise over the mountains, kiss my wife and finish reading a really super crime novel. Hopefully, along the way, I'll do somebody some good.

I don't know why I have this day, but I do, and I plan to enjoy it. And maybe, God willing, the bus won't hit me and I'll wake up tomorrow.

Enough. Ive got grass to mow.

Sent by Rick Baish | 1:38 PM | 8-29-2007

wow. you know, i like most people, can relate to your post. it is a tight rope we walk in learning to die while we are still living. for me, to grasp the "live each day to the fullest" thing means to so fully embrace death that i have no plans for a future. and some things, like getting that PhD, can't be done in a day. so, do i not dream of those things, but only grab onto what i can accomplish today? and yet, i can slip too easily into complacency, forgetting that my future is uncertain, putting off things i could do today for a day when i feel more in the mood to do them. so what can we do? i often look in the mirror and can see too much. i think my bigger struggle is in accepting my human nature, in being graceful towards myself. i'm just not going to get that perfect balance anytime soon. so i have to accept where i am today, the only day i have, the only moment i have. i appreciate your honesty- it's touched a deep place.

Sent by Aimee Shaw | 1:47 PM | 8-29-2007

Before you know what kindness really is
you must lose things,
feel the future dissolve in a moment
like salt in a weakened broth
What you held in your hand,
what you counted and carefully saved,
all this must go so you know
how desolate the landscape can be
between the regions of kindness.
--from "Kindness" by Naomi Shihab Nye

Your post reminded me of this poem.
Ach, so much to carry today.
We are listening.

Sent by Jen (Ann Arbor) | 1:48 PM | 8-29-2007

Morning Leroy & Everyone,
Have been here from the start, first time to write my thoughts.What everyone has written had been like a perfect autumn day and a golden thread to hold onto.I feel so uplifted and so understood, these thoughts from the hearts of ya'all helps me to validate my being here now, like I am ,with cancer. I feel the phantom future,thanks Leroy for giving it a sense for our reality.I do my best to carry on with life with my old self and new self,and have pieced them together as best as I can,ha, which never really feels quite good enough.Although everyone around me says I'm doin great,now that really makes me feel good to make them feel happy!!!I do go through each day for that time and space and that helps keeps me focused on little things that never spiked all of my senses before cancer.Now thats a good thing that has come out of all this.I think the phantom that now sits on our life gives a very uneasy feel in all aspects of our lives. The thing I "hate",and I never used that word until 3 years ago,is that it has the power to change everything in our lives in the time it takes to say it.I feel love for everyone here and for all you're true feelings through these words, sometimes I think I can read between the lines as they say,and I feel very lucky to have you Leroy and ya'all here for this journey we are on.There is strength in numbers.Leroy with you at the helm and giving us a space which we can all gather at, a boat,naugh, lets make it a big ole' ocean liner I know I don't feel alone anymore.Pray you are doing better each day.Like in StarWars"May the force be with You".~Peace~

Sent by Lynda | 2:09 PM | 8-29-2007

Dear Leroy,
You always turn the negative into a positive...what a life lesson for us all. Today as I drink my Gatorade I will raise my cup to your wonderful phantom future!
Charlotte in Temecula

Sent by Charlotte Kewish | 2:10 PM | 8-29-2007

Dear Leroy,

We all have a phantom future; having cancer just brings it into clearer focus. I was blessed to have my second child at 39. There were complications because of my age - I had preeclampsia and she was born at 30 weeks at 2 lbs, 12 ounces, and we both almost died. There were babies beside us in incubators born at the same gestational age who had brain bleeds, heart defects, mental difficulties. I was so afraid for her, but my husband never even considered that she wouldn't be ok. He just waited, patiently, until she was ready to come home, six weeks after she was born. Today she is starting first grade, with no ill effects of her prematurity except some vision issues (corrected by glasses). There isn't a day that goes by that I don't look at her and wonder how long I am going to be with her, not only because I'm older, but because I worry about what might happen to me. All the other mothers my age have grandkids, and I'm starting over. My other child, a son, is in college. I have such empathy for young mothers with cancer who may not see their children grow up. That seems like the cruelest blow one could possibly get, and one that haunts me over and over. I don't take even one single day for granted. But I try to reason - in my own warped way - about history. What would've ever been built, what would've ever been planned, what countries would've ever been conquered, if the people primarily responsible would've had the attitude - "well, I won't do anything, because I might not be here" to finish it, to see it, to use it - whatever. No one would ever accomplish anything! We'd all be sitting on our butts day in, day out, waiting to die! None of is guaranteed even the next breath. It's scary, but makes that breath, when it comes, oh so precious.
Much love, comfort and healing to everyone.

Sent by Connie E. | 2:11 PM | 8-29-2007

I think we should all plan for our future, it keeps us going. We all must hope for a future. Why else would we go thru all we do if we didn't think we had one. Prognosis are only made to be broken. So everyone, dream, plan and hope for your future, if we don't then cancer wins. God bless

Sent by David White | 2:15 PM | 8-29-2007

Leroy, you said a few weeks ago that cancer twists our present and steals our future. Many of the women in my family lived into their 90's. Until last September, I always assumed I would too. Now things seem more immediate but I'm still planning for that cruise year after next! Thanks for your eloquent words.

Sent by glenda | 2:18 PM | 8-29-2007

Thank you so much for - with your usual keen perception - finding just the right turn of phrase to describe this god-awful limbo cancer throws us into. I have been wrestling with the hope, grief, and uncertainty of a "phantom future" these past two years, lacking a word to describe this awkward state. Do I plan for that? CAN I plan for that? Will I be here then? Striking the balance you describe - between living and planning and honestly, realistically facing the Mack truck we happen to know is bearing down on us - it sure ain't easy, is it?

Sent by Max Beck | 2:26 PM | 8-29-2007

Oh my Leroy, you got all 'a this one. forgive my baseball analogy, but this one went, not to the bleachers, but clear to the street. I know that's why people admire you.....because you say things that we all identify with. My recent example of defying the phantom future was buying a pair of Clark's shoes. I've been wearing this brand of shoes since the early 70s. They cost too much, last for years and are the most comfortable men's shoe on the planet. I'd been putting off replacing my old pair (6 years old) because "well, why spend that money when........."? I can't believe how good it felt to slip my feet into these new ones.....all of a sudden this is about way more than just a pair of shoes. You're still battin' a thousand, Buddy.

Sent by James Wallman | 2:33 PM | 8-29-2007

Leroy, Cancer causes pain in so many ways. The life cut short, and so forth. I still catch myself dreaming, and wonder the point of it all. But, you can't just stop something you have always done. Cancer beats us up in so many ways, we have to hold onto our dreams! Keep yours! Stan

Sent by Stan Wozniak | 2:45 PM | 8-29-2007

I will not let cancer steal my future my hope my heart or my soul. It simply can't have it.
Its a tough journey no doubt..but living in today making it the best day humanly possible is where its at. I use to dwell on what's happening down the road. I think thats really overwhelming with cancer in our lives. I don't do that anymore it takes up to much of my energy
I still have dreams and hopes for the future just on a new level. Cancer makes life different. But if we let it us robs us of the above. Then we are goners. From the start I said it was not getting me or the pieces of me that matter the most.
Some times we sow seeds one day at time on the rockies paths...Then we look back and see wild flowers. IT gives us hope to move along the way little by little inch by inch. IT may win but being positive along the ways is important.
I just keep on plugging way even with the issues that come cancer. I keep trying new things to get things done that I want to do. Maybe I just like a darn good challenge!!Cause I sure have plenty these days.

Gretchen I didn't think I would be there to see my youngest son make it to junior high. That was really tough. But some how I made it..I understand the dark clouds and days. I do had mine.I don't dwell on what I can't do..now..Is on what I can do and what i do see that day. Not sure it helps but I do understand..

Leroy thanks for making my day and really helping me to understand all cancer patients have some of same thoughts just maybe on different levels.
Awsome is all I can say.

Have a good day Take care of you...Everyone.

Sent by Kerry | 2:48 PM | 8-29-2007

Leroy
I've been following your blog ever since the show on TV, but today's message really hit home. My husband was diagnosed with glioblastoma almost 3 years ago, so he has outlived all predictions. But the initial loss of a future - of growing old together - is what initially hurt me the most and still does. We're running out of treatment options, so that new future is looming even more ominously. But we try to fill each day with enough love and life for me to take on into that "future".
Stay strong!
Pat

Sent by Patricia Syvertsen | 2:54 PM | 8-29-2007

LeRoy, thanks again for bringing up a critical issue about living with cancer. As I near the end of my chemo for colon cancer, I am told that I can 'go back' to my normal life. That seems foreign to me, even though I have been working part time already. But I won't really be going back; work will never hold the same attraction to me.
I do dream about the future,but with some trepidation. Even if my scans and colonoscopy come back 'clean, who knows what life will be like 3 or 5 years from now? Sure, we need to have dreams, but I am trying to concentrate on short term plans. I try to make a positive difference every day, just like your blog does for thousands of us. Thank you for your diligence and caring in the midst of your own problems. May your future be bright

Sent by Lou Loggi | 3:26 PM | 8-29-2007

Leroy, you've MADE MY DAY! There are times when the chemo have me weak. Those are the times I have to work at seeing a future for me. I tell everyone that if it were not for those we love in this world, we'd all just give up and not do chemo again. Ha! Today, you've reminded me I must "live" with this cancer and not give in to it. You see, we all love you and need you here to give us that kick in the pants from time to time, to remind us that we also need to think ahead to things positive. My daughter-in-law heard that her babie's birth might be two weeks later than the due date of Sept 9th. I was thinking to myself, "Oh no! Fourteen days less time to spend with him!". Well, I'm not thinking that now. I'm thinking that there will be that amount of time I can get that baby quilt completed and his mom and dad can get the nursery in order. He'll have more time to develop those little lungs so we can listen to him cry loudly. After all, good things are worth waiting for, aren't they? You are such an inspiration to us all. We never know what we're going to read when we see the notice that you've posted a new blog. We laugh and cry with you. I heard on a tv show last night that laughter is like "sprinting". It's the best medicine. Been fishing lately? Or, just sat on a river bank and watched the water run by you? I just did that in Oregon as I taught my great niece and nephew to fish. I sat on big boulders that went out into the river there in Canyonville, Oregon and let my feet dangle in the cool water. We watched "eagles" flying above us. Watched the pine trees swaying in the gentle wind. Now that was feeling "alive"! Try it!

Sent by LindaW | 3:46 PM | 8-29-2007

Leroy,
Once again we all seem to be on the same page. My husband thought we had a future planned out until he was diagnosed 3 years ago. As with all cancer the prognosis is just a number but it is difficult, if not impossible, to get that out of your mind. One day I want to hoard all we have for the future and the next it's go for what you want because tomorrow is guaranteed for no one. I am sending my husband to visit his dearest friend this weekend just in case. Thanks for writing on this particular thought on this day. I wish I had your strength.

Sent by kathie | 4:02 PM | 8-29-2007

Leroy, I too heard you this morning, and what you said about living with cancer rings true for me. I have Brain Cancer. Last summer I had a successful surgery with the majority of the tumor removed, but now I'm on the every 6 month watch list. I was standing in the drug store with my husband a few days ago, and needed my calcium chews, and actually said "why am I even bothering taking calcium for my bones? Its not like I'm going to be alive at age 75 to even get osteoporosis". (I'm only 40) My husband said "you have to get it, because if you are alive at age 75, you'll be very mad at yourself for not buying the calcium" I love him so much!

Sent by Rebecca | 5:02 PM | 8-29-2007

I've dealt with both types of phantom pains. I lost both breasts to cancer and I knew I might experience the phantom pain. One day shortly after surgery, I complained to my husband that my nipples hurt. It's the weirdest sensation...and..how do you scratch?? My husband replied "how do you know? You don't even know where they are or what shelf they're on". I just busted up laughing.

On losing the future..I thought the best way to die was to actually get hit from behind by a bus. You wouldn't see it coming, wouldn't fuss about it or have anxiety. I decided I could still die that way. I live my life as though I have forever. I make plans for five or ten years down the road. This way, I don't feel cancer took my future. I would much rather be planning next year's show season than my funeral, even if reality says I shouldn't. I'm planning to be surprised when I go ;-)

Sent by Karen D. | 5:20 PM | 8-29-2007

Leroy, Great post today. Uplifting.

Yvette, my heart is with you and the decisions you have to make. Quality verses quantity. Such a hard decision. Such a personal decision. My husband chose quality over quantity and has just tried to continue on living each day the best he can. At each onc. visit when asked if decision has changed and he says no I want to scream YES, but I know this is his decision to make. He continues to look to a future that for him is probably short but he lives today doing the things that are important to him and that his body will let him do.

Allen Cardenas, my thoughts and prayers will be with you and your wife. I know where you are at is so terribly hard. Just please try to take things one day at a time. We are walking with you both.

Sent by dorothy | 5:39 PM | 8-29-2007

While composing my earlier post today, the chemo-brain kicked in and I twice wrote "remission" when I meant "recurrence." I can't blame chemo though for my recurrent tendency to too quickly push the e-mail send button.

Sent by Rick Baish | 6:05 PM | 8-29-2007

As the main care taker and advisor to my mom, age 50, who was diagnosed with ovarian cancer in February of 2006. I too understand this phantom future you spoke of. Your comments come a day before my mom???s MRI results, which is always a moment of wondering what the future holds. So far, my mom has been turning out successful test results for the past year following her 6 rounds with chemo. I dream of the future. I dream she will continue to share the joy my first child, her first grandchild, brings to her every day for years to come. I dream of my mom finding the perfect partner to share the rest of her life with. I dream of places she will visit. I dream of my mom having less and less doctor visits because she continues to thrive and be cancer free. I hope she dreams of these same dreams and even bigger dreams I couldn???t imagine. I hope tomorrow???s test results reveal we can continue with our plans for our phantom future.

Sent by Kirsten | 7:22 PM | 8-29-2007

Leroy,
I heard your voice on the radio for the first time today. I have followed your blog since the beginning. Keep up the good work...it is making a difference for all of us.
We love you and pray for you every day.
Thanks for sharing your heart.

Sent by Bethann | 7:57 PM | 8-29-2007

Dear Leroy/All,

I was reading a book that my therapist gave me after my husband got ill. I read a quote that hit right on target with todays subject matter.

"Worrying about something that may not happen is like paying interest on money you may never borrow"

Maybe we do have a "Phantom future"

Sent by sasha | 8:48 PM | 8-29-2007

I"m finding it hard to even plan on little things, like recently my mom asked if i wanted a ticket to a music show i'd love to go to. My first reaction is yes! definitely. then i realized that the show is the day before my last day of radiation, and that i will probably be exhausted and not feeling up to going out, especially a late night concert. So, reality kicks in, i can't plan.

Sent by Jenn | 9:12 PM | 8-29-2007

Hi Leroy
I really enjoyed this essay.I have stage IV Peritoneal cancer so I really to so many of the things you do.I would really enjoy hearing about your family/parter, and role in your struggle with cancer.sometimes i get so absorbed in my illness that i forget how much our caregivers are suffering right along with us. how can we help them??
Mary Scruggs
Cypress TX

Sent by Mary Scruggs | 9:23 PM | 8-29-2007

Damn you're good, Leroy. You so sum up what I have thought about so many times yet don't want to share with my loved ones so as not to worry them. Every day I read your blog and this is the first time I've been able to get so close to someone else's cancer since my bc diagnosis in 2001. Thank you for your guts, your brain, and your humor. :)

Sent by Lori | 10:32 PM | 8-29-2007

Dear Leroy,
I've contemplated many times sending you a comment, but I'm always afraid that I might say the wrong thing. But this post has touched me deeply. I was diagnosed almost 2 years ago with stage IV colorectal cancer and at that time I was given 22 mos to 5 years. Last August I made a reservation for my husband and I, to go to Alaska on a cruise this August, and we just came back from it, I felt good and was able to completely enjoy the trip. But now, my sister in law wants to plan a trip for next August, which will be almost 3 years since diagnosis, and I find myself unable to plan that far in advance. I'm terrified to make plans since I'll be passing my first time frame. I know I should be rejoicing in that I'm still doing well, but the reality is, that can change at any time. It's a terrible place to be.....I try to remain hopeful, but I completely relate to the phantom future, I'm right there with you. Right now I'm living every day to the fullest and hoping that I have many more days to live that way! You are a great inspiration to us all and I'm addicted to your blog.......it's my morning coffee!
My thoughts and prayers are with you and yours every day.
Susan

Sent by Susan | 1:47 AM | 8-30-2007

Good essay Leroy. All the comments were wonderful as well. I cannot agree more with a lot of you. Attitude is so very important. We have to keep our dreams and hopes alive. To do otherwise is to die. I refuse to do that. I say this as I am in a wait and see situation. I hate it. I have ovarian cancer. Survived several surgeries each followed with chemo. Now I have 2 enlarged lymph nodes very close to my aorta near my spine. An area they do not want to do surgery on. Does anyone out there have any suggestions for my situation. My docs want to wait another month and see how it goes as I am not symptomatic. I feel wonderful as a matter of fact.

Keep hoping and dreaming everyone.

Sent by Betty in Germany | 3:01 AM | 8-30-2007

Dear Leroy,

I have dreams, too. Or I did. I never believed my dreams would be shattered in the way they have been, so utterly hurt and disappointed in those I always
thought would be willing, and bound by oath, to help me if I found myself in this horrible situation. To be here at this hour, so tense and angry that I have been abandoned and deserted by those I was taught to believe would be of help at a time like this, to have once known a sense of peace, believing there would not be a question if it was worth the effort to continue.

Unexpectedly, the dream turned to a nightmare. At this point I am blaming myself for something I must have done, some shortcoming that has led me to this point in time where I know only one thing for certain---I have never known such loneliness and fear, ever, from the time I was conceived---nor could I have anticipated experiencing the feelings that bring me here to write these thoughts. I have never been so afraid, so terrified...and I want nothing more than to awaken from this nightmare and find the truth is, that is all it is -- a nightmare.

Love, Briana

Sent by briana | 4:03 AM | 8-30-2007

Briana:
You did nothing wrong. It was done to you.

I'd like to give you some words that would make it better, but having gone through all we have, I don't think words will change how you feel. I used to think prayer would help, but at some point, even it stopped helping. I, too, thought my friends would help, but at some point, they got too busy.

In my case, I got lucky. I met a total stranger in the Hobby Lobby while looking at beads. I made a comment, she answered back, and the friendship started then and there. I think what helped was the fact that we did not have a past, or maybe even a future. We could start right then and there...no expectations, no disappointments.

Is there anyway you can find a help group where you might also find such a friend? You MUST stop blaming yourself because your friends are human and may not be able to handle what is going on.

I'm setting up a hotmail account so you can email me is you'd like. It is ForBurge@hotmail.com Please feel free to contact me at that address.

Nikki

Sent by Nikki | 11:49 AM | 8-30-2007

Dear Leroy,
I was touched by your essay. The comments have also been great. I work as a hospital chaplain and see many patients living with cancer. Patients with symptoms struggle to have hope. I work with a palliative care team made up of a palliative care physician, social worker, nurse and myself. We work aggressively to manage physical, psychosocial, emotional, and spiritual pain even while patients are receiving aggressive curative care. Pain in any level makes it a challenge to have hope.
Thank you for sharing of yourself.
I am holding you in the Light,
Yoshiya

Sent by Yoshiya Togami | 1:06 PM | 8-30-2007

Don't you think these posts say a lot for the future? You could put it into a book - your posts & pertinent daily comments.

My son is now back at work since the end of July, after a year being off. He has done very well & is extremely lucky thus far, w/only several side effects (no surgical repair - almost guaranteed originally).

When I talk to a friend whose husband died 20 yrs ago - successful professor who had to make it on his own - w/a brain
tumor. The justification!!!!!! In those days chemo was a relatively new treatment - they made their location choice - which meant they had to travel. Then the treatment, in its infancy, required massive doses followed by resting for 3 wks & then another massive dose. His 2nd
treatment left him blind.

I tell her all the time, my son has people like him to thank. AND, future
patients will be recipients of everyone
going through treatments now.

I truly feel, that hanging on will give everyone currently in treatment, new options for their future.

YAHOO to all of you.

Sent by Joan P | 1:56 PM | 8-30-2007

Hi Leroy

Read your thoughts on Phantom Future and began to wonder about my life. Came to realize that before cancer, we all lived with a phantom future but were too stubborn to see it. I, like so many, just thought I was immortal. Sure I'd die someday but that was far in the future. It was until this gorilla called cancer wacked me up-side the head and got my attention. It was then that I decided that I'M NOT GOING yet. I have a future and I'm going to live it.
I do enjoy reading your thoughts ever since I saw you on the cancer special of few months back.
Be strong
greg

Sent by greg szyndrowski | 9:25 PM | 8-30-2007

Great Post....You found the common denominator of all of us. I feel for all those folks who will leave this world before us and don't know it.

We have been given the knowledge and it is up to us to use it wisely and productively

Sent by Bill Nakos | 10:37 AM | 8-31-2007

so here's a thing. i commented weeks and weeks ago about my father saying, "i'm not dying. i'm alive until i'm dead." i like this very much, and it seems relevant to this post, so i'm repeating it.

but there's another dimension to it: that of the loved ones. as my father's loved one, i added this to his statement: "i will have as much time as i need to be sad when dad is no longer alive. right now, i will focus on my great good fortune that he is still here."

this is an exceptionally hard thing to do. but focusing on the present in that way is enormously rewarding. yes, we shall have forever to be sad. but if we can manage to focus on the present during the 'alive' parts, we shall also forever have the memory of having done so. this makes things possible.

Sent by mary | 2:39 PM | 8-31-2007

hello leroy, i heard some of your words the other day on npr and just finished reading all of your words.you touched me in that in my mid 60s i am starting a 3rd career an was reminded by you that none of us know how much time that we have left on this earth. so why not give whatever we dream about a try. your courage and optimism is a true inspiration. thank you for that and i wish you as much joy as you can pack into the suitcase of life that you carry with you.

Sent by barbara herbst | 2:54 PM | 8-31-2007

Leroy -

I just heard your discussion on NPR. I'm a little late. I am so happy to have come upon this blog

I am a 1 1/2 year breast cancer survivor and have felt the same "phantom" loss of my future. It is hard to make plans when you're not sure if you'll be around to see things through. I was 42 years old at diagnosis. My friends were having babies, buying houses, changing jobs, putting additions on their homes. The cancer diagnosis stopped all me plans in its tracks. The loss of my future has been more painful than the loss of major body parts - I've lost both breasts and both ovaries to this cancer. I feel pretty beat up myself.

Sent by Nan Alexander | 9:07 PM | 9-4-2007

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