Subj: Hard News from Tom 94-11-06 23:30:17 EDT From: Tom Mandel

Some of you may have noticed over the past several months that I've not been quite as ubiquitous in our message boards as in the past or maybe that some of my responses have been a bit sharper than usual. Since we all sort of know each other, given the curious connections this new medium provides, I thought I'd say why...

To put it simply, I've been ill for several months. We all thought it was just a virus that was taking longer than usual to go away but unfortunately, as I traveled down the diagnostic path, the news was not good. No way to put this gently, so I'll just say it: Last Friday I found out that I have inoperable lung cancer (stage 4 adenocarcinoma, for those of you who are into technical details).

Next week, I start the arduous trek through modern medicine, such as it is, with radiation and perhaps chemotherapy, and doing whatever else I can do to marshall the army of good cells to enter into battle with the army of bad cells. My plan is to do everything I can to get on top of this beast, and to enjoy my life, which to me mostly means spending a lot of time with my friends, including the many I've made in this medium over the past decade and especially this last year.

I'm still going to be here in TIME Online, hosting the message boards, but there may be times during therapy or while I'm off visiting dear friends around the world that I'm not around quite as much as I have been. I don't plan to go into hiding or anything like that, and all of you here, friends, foes, and lurkers alike, are more important to me now than you were in the past. So let's continue to have a good time together, and please bear with my occasional absences and be gentle with each other.

Subj: Re:Hard News from Tom From: Walt Isaac

Working with Tom Mandel has been one of the great pleasures of our foray into cyberspace. Tom, you have an amazing grace when it comes to fostering a spirit of community, working with people trying to explore a new realm, and mixing insight with humor. That grace and style will be something you bring to this battle, and all of us marching to your banner know it will serve you well. In addition, you're really a cool guy. We love you.

Subj: Re:Tom's Voice, Tom's Face 94-12-20 09:55:52 EDT From: MelodyWin

Dear Tom,

I have no idea what you look like, what your voice sounds like, and, until very recently, I had no idea what you ate(or should I say drank) for breakfast-lunch and dinner. But over the past 6 months, there has been this presence/life force/ intelligence/humor of Tom Mandel everywhere on the Time Online boards.

I am in awe of the way you have been able to create such a diverse virtual community of people here, constantly responding to posts all over the boards -- making this the best place to hang-out online.

And now, with the disclosure of your illness, the updates on your treatments, the personal and yet intimately private way you are staying in touch, I am all the more in awe of your courage and how you are continuing to include us all on your next phase of the journey. (What else would one expect from the first graduate furturist?)

Thank you for continuing to reach out to all of us. May our prayers and hopes and dreams for you circle back to you and carry you through the winter solstice and the spring equinox and summer solstice and the autumnal equinox and into the next millenium. I pray you are not in too much pain.

Melody

Subj: Re:Virtual Blankets 94-12-21 11:29:32 EDT From: ABSea

Happy Solstice, everyone. I think a few pagan rites are in order, don't you, Tom?

BTW, I was thinking as I almost misspelled rites that we are about to enter a period of America history when pagan rights are likely to come under assault again. Now as you know, Tom, I'm all for a healthy dose of libertarian governance. But I am concerned that the rise of the Christian Right issues of school prayer, pro-life, etc. (stuff that, to my mind, contradicts libertarian philosophy) may bring with it some unfortunate pagan-bashing.

So I think it's appropropriate on this Day of Solstice to put in a word for some of the better pagan rites. I have in mind things like wild naked dancing in front of large bonfires where everybody is sweating profusely and glistening in the firelight; drinking mulled wine and wassail (or Glug if you are of the Nordic persuasion); sexual abandon....

You may not feel up to all this, Tom, but maybe you can talk Maria into setting a large bonfire and going through the rest of it while you sit back and take it all in. %-)

Subj: Re:Virtual Blankets From: Tom Mandel

Bonfires?!! Wild drinking parties??!! Sexual abandon?!?

Subj: Re:Virtual Blankets From: RLDuncan

What an astounding topic. I stay away for 24 hours and find this whole improbable crew in the midst of a complex metaphor, trooping off naked to Maui to dance and glisten, led by Dave in a hat and ABSea (you folks are seeing quite a different ABsea online than the quite solid fellow we know in our halls). Barry, you may not bring your hockey stick.

Also I'd like to applaud a couple of upward ticks in Tom's condition. To wit: his doctor's approval of the way he's handled the radiation, and his perking up online when libidinous activities were mentioned.

I kind of like this carousal idea, and only, mind you, to help support Tom, I intend to tag along, carry a camera and we'll supply a little CuCmee for the Internet.

Ummph. First I have to do my stretching exercises.

Subj: Hair today, gone tomorrow... 94-12-28 21:00:06 EDT From: Tom Mandel

Uh oh. Is that little plinking noise the sound of hair falling quietly to the floor? Yes, indeed...ah well...where did I stash those hats...? %-)

Subj: Re:Gone Today, Hair Tomorrow 94-12-29 00:56:34 EDT From: BT Agland1

Really tomas........

unique art forms are currently possible sans hair, consider for example spinning it into yarn for a woven hair hat, or balling it into a gigantic hair ball, and then there is always the possibility of the proverbial hair shirt, not to mention the enormous saving of time from not having to patronize the local clip joints.... Jackson Pollock would reccommend using it for drip painting, also the impromptu macrame tying gives one pause

Subj: Bill the Cat 95-01-03 14:03:05 EDT From: Tom Mandel

I woke up this morning feeling like a cat in a vast fields of hairballs! PFFFT!

Subj: Re:Bill the Cat 95-01-03 23:44:59 EDT From: JCASTRO

Tom, have you considered painting your head?

Think of the possibilities! You could paint it blue and gold, for my beloved Cal.

Or red and gold, for TIME.

You could diagram your brain - showing the sections devoted to intellectual passion, sex, liberal ideology, futuristic pondering, sex, well you get the idea.

Subj: The blues... 95-01-21 01:35:38 EDT From: Tom Mandel

About the blues, well, yes, I want a sharper remission...what I WANT is the damn cancer gone, out, blotto, erased, but the real world reminded me today that's not the way this works generally. That surviving "marker" tumor in my neck is a distant metastasis, and it nudges me to remember what I'd really like to forget, deny, ignore, and that is my mortality.

Life's edges get sharper when every sweet bite has a bitter echo...

In the past two days, I've also heard from three friends about their recent cancer diagnoses--new diagnoses--and that woke me up a bit. Damned demographics.

But basically, I feel pretty good right now, and really look forward to side effects of treatment passing away. Then, onward...

Subj: Re:The Rainbow... 95-01-21 21:23:53 EDT From: BT Agland1

tomas.....

my beautiful fifteen year old daughter told me something just after her bone marrow transplant that i've never forgotten: "Get the most from life, always take advantages of the opportunities that arise because they may not come again. One can never tell what they may have sacrificed unless they have pursued it" It was her way of telling me she intended to take it all in now.

She convinced us to take her to Yucatan and together we climbed the pyramid at Chichen Itza, swam in the underground river at Xcaret, walked through the ruins at Tulume, and drove a jeep into the jungle to see the pyramid at Coba.

Kendra always felt she had a huge advantage over us because she had acquired the ability to put things in the appropriate perspective, she told me " daddy you really don't know anything about life until you spit in death's eye."

Subj: Status... 95-02-02 23:20:35 EDT From: Tom Mandel

No way to say this except say it: the biopsy of the lymph node on the left side of my neck came back positive for adenocarcinoma. What this means, in brief, is that my disease was somewhat more advanced when it was originally diagnosed than we had thought. It also means that it doesn't make a lot of sense to continue with the current cisplatin/VP-16 therapy, which just doesn't seem to be doing anything beneficial and of course has serious side effects.

Subj: Hard day night... 95-03-01 01:32:31 EDT From: Tom Mandel

...the love around me is what I'm hanging onto today and tonight...I've had a difficult couple of weeks, something going on in my right lung that we can't figure out, maybe collapsing again, maybe pneumonia, maybe some more tumor, who knows, but it's been sort of gnawing away at me for a week or so...my asthma has gotten gradually worse and that wears me down, wheezing and trying to catch my breath, wondering whether it's time to up my prednisone dose, worried that if I can't get off the prednisone, I'll be ineligible for the gene therapy experiment, and tonight, I've got a bit of pleuritic pain right around where my chest x-ray shows something fuzzy and progressive, and so I'm really, really scared, not because I'm going to keel over tonight but because I have to deal with the hard truth of a progressive illness, something that just sort of trends downward gradually.

I really hate this...I don't know what to do or what to say...I sure know that I don't want to die but sometimes, tonight, I do have to admit to myself that's really what I have to face, and I don't know how to do it. I mean I sit here crying and asking myself what next? I don't even know how to talk about it, except to ramble like this, words just dribbling out onto the net and this screen. I find myself asking catechism questions about death: is there a God, is there a heaven, what's it like to go there? But all I am coming up with aren't answers but feelings that I'm a lost little child, all alone, or about to have to leave all my friends and do something alone, something I just don't know how to do.

I wish I could just for once be in a large room with all of you, the people who post here and the ones who just lurk and read, greet each of you, embrace you, shake your hand, kiss your cheek, just hold on...maybe if I could hold on to all of you, I wouldn't have to go down this path like this, but well, that's now how life works, is it....

I wish I could be in a large room with all the people I've ever known, my friends from childhood, people I've surfed and played with, my colleagues over the years, the women I've loved and who've loved me, my dear family, even the ones long estranged, all the web of my life, so that I wrap myself in all of them and all of you and everyone else I know and then somehow I won't have to let go.

Friday's my birthday, my 49th, and some of my closest friends out here are going to have a nice party for me Saturday afternoon, which I'm looking forward to. But I'm also not looking forward to it because I'm afraid it will be my last birthday party, and in fact that's what's bothering me a lot...was last Christmas my last Christmas, the snowstorm in New York my last snowstorm, each event, each greeting and each goodbye the last time I get to do this with this friend and that lover?

I sure know how to hug and hold on to you but I don't know how to let go and tonight I don't quite know how to stop thinking about it...

Subj: Re:Hard days night... 95-03-01 08:31:32 EDT From: BBracey

I think we all know that birth is the beginning of the long road toward death, and that some go gently and some just go, without a reflective thought, a hug, a last kiss or a first kiss. It is something to think about but not to dwell on.

Jackie had the same thinking... but we always hope for the best for all. It goes without saying that we love you. I guess I better get the Hindu parables out.. to give you some other religious thinking about mortality...my words are clumsy this morning.

Real friends want to say to real people that we will be your spirit and your voice and your ideas and we want to encourage you not to be sad..to take advantage of the awareness you have and every moment. I would never have met you Tom in the real world, so the interface is a grace and your sharing all the more positive. I never heard of the poet you spoke so highly of. So I have all of these books and am taking the time to read them.

You have permission to be whatever you like , and tell us what you like.

Tom, some people never live.

They are shells walking around with empty eyes.

When I am sad, or hassled, I have "Henderson the Rain King..." it makes me laugh out loud... or I read some favorites..

Tom we have not come this far with you down the path to let go of your hand or your heart. Love and slow hugs... Bonnie

Subj: Re:Hard day night... 95-03-01 12:51:47 EDT From: Tom Mandel

You know, there's this little group of us on the WELL, sort of unwilling members of a club no one wants to belong to, and we're all sort of spinning around in strange little orbits...myself, a guy who's slipping into problematic territory after five years of CML (leukemia), two guys getting to the advanced states of Hepatitis C, a woman with ALS...all kind of holding hands across cyberspace, a kind of floating support group...

All of this helps.

Subj: My party 95-03-05 00:13:31 EDT From: Tom Mandel

It was a tough week, with my right lung collapsing and my asthma ramping up, but it ended on a very sweet note when about 30 of my closest friends joined me to celebrate my 49th birthday in Palo Alto today. Some of them have been friends since I last lived in Hawaii 25 years ago, and most of them had never met each other...someone ask why I'd been keeping them all apart and I said I was saving them for all for a rainy day.

They brought me wonderful presents from gorgeous orchids to hysterically funny Callahan cartoon books, to a Nerf ball gun and erotic post cards.

It was the best birthday party I ever had, even better than the one when I was 8 and my parents invited their good friend Hopalong Cassiday (no kidding!).

God bless my friends, each and every one of them.

Subj: Desert Dreams 95-03-11 20:12:01 EDT From: JASPAR

I've been off work the last 2 days (notice my extra postings?). Threw my back out moving furniture in our downstairs rooms. Our house is on a hill that is now saturated...and goo is seeping in.... Whole house may go down in the next 5 pointer.... Mosquitos abound.... Wife and I are bitten all over.

Tom! Maybe it is time for all of us to move to a REAL desert climate. Like now ....

Maybe I could open the Conservative Bar of Needles, replete with Rush Listening Room (actually, the whole Bar), Gun Store next door, and you could open your Liberal Bar across the street, replete with a ______ (fill in the blank) Room, and a _____ (fill in the blank) store next to it.

Whaddya think?

Subj: Re:Desert Dreams 95-03-11 20:22:56 EDT From: Tom Mandel

Lemme see, the Hillary Clinton Reading Room (liberals can read but conservatives can only listen)...and a Peyote Religious Ceremonial Button Store!!!

Subj: Tough question.... 95-03-19 00:18:15 EDT From: JASPAR

Wow, I changed the "Enter Subject" Box 4 times. This is getting very sensitive....

Tom, you are the leader here. This is your Folder.

Anything you want to say that you haven't said?

We can take it, we are here for you.

Subj: Re:Tough question.... 95-03-19 02:13:45 EDT From: Tom Mandel

Hmmm...well, I had a pretty nasty bronchospasm on the way in my front door tonight. I guess the cold air got to my asthma. I got it under control with the abuterol inhalation machine.

These past few weeks, fear of my cancer and dealing with it has been pushed into the background by worsening asthma. At several times this past week I've felt like a pulmonary cripple, and it's pretty damn scary. I hope this clears up soon, else I will be moving to wheelchair and oxygen bottle fairly soon. This is not something I anticipated...

Subj: Breathing lessons 95-03-20 14:11:50 EDT From: DaveGin

Jaspar, you are always a surprise. Not that you have wisom and insight...but that you so easily share it. Thanks.

The power of surrender...to routine, to our body's natural healing powers or to God's will...makes us stronger than anything we can do on our own. Not a particularly easy lesson to learn, however.

There has been some study done (help me out here, folks), that actually scientifically studied the efficacy of prayer....and found that there does seem to be something to it. Under controlled studies, they determined that prayer, whether personal or intercessory for others, did seem to benefit ill folks. Those prayers that focused on surrender to God's will seemed to work better. A book has been written about this...I saw the review but not can't find it.

Anyway...breath easy Tom. Fight those things you can...but know that we're here to help you breath in and breath out.

BTW, Mason, the Chickenhawk guy wrote a sequel, which detailed his post-vietnam fall and reconciliation. If it's as harrowing and true as Chickenhawk...should be a very good book.

Funny about "Dispatches." I was in a very differerent bed when I read Michael Herr's reports on the seige of Khe Sanh in VN in Esquire. It was the top bunk of an open barracks bay at Fort Polk, La. in July 1969, where I was spending the summer after being invited by Richard Nixon to defend the nation. Scared/bored and desparate for something to read, I went AWOL one humid Sunday to the PX, where I found the Esquire. I hid it under my mattress and read it at night under the dim lights of the latrine..

Herr's stuff was scary/funny/frantic/true and was as good a training manual possible for the schitzophrenia of Vietnam. The first rock-n-roll war, he called it. Not for the first time, I asked myself what the hell I had gotten myself into. Nearly 30 years later, I'm still not sure.

Subj: Dear friends... 95-03-25 21:41:16 EDT From: Tom Mandel

My dear friends...

First of all, Maria and I thank you very much for your good wishes for our wedding, which we've got scheduled for April 1st, a week from today. (Ignore the April Fool connotation, please, it's just the first convenient day.)

Second, it's been a pretty tough week and I'm starting to get worried that, well, I'm not going to be around a lot longer. Between my three days in the hospital and increasing dependence on O2 at home, I sense that my health is headed in the wrong direction a bit too fast. I had an asthma attack this afternoon that was really scary but I pulled out of it okay. The problem is I'm already pretty much at the maximum care that medicine can provide for asthma; short of being in a hospital, not a great idea for various other reasons, I'm sort of stuck out here on a limb.

I'm going to do everything I can to pull through this crisis but if I don't, well, I want you all to know how grateful I am for what you've all brought together here over these past six months. This has been the finest time of my life and it's been that partly because of all of you and the love you've brought here.

I'm not saying goodbye because I'm not planning to go anywhere. I'll probably chime in in an hour or two, and tomorrow morning, and so on, but I am kind of edgy and so, well...

All my love,

--Tom

Subj: Another poem 95-03-26 20:46:07 EDT From: ABSea

Tom (and everybody),

When I was recently in Florida, visiting my father, I went with him to his tiny little Episcopal Church. The sermon was given by the visiting "Primus" of Scotland, that is, the head of the presiding bishop of the church of England in Scotland, a gentle and persuasive speaker who talked about different kinds of prayer.

He read to us one of his personal favorite poems, one written by a Welsh monk named R.S. Thomas. The subject of the poem is an island off the coast of Wales -- one of many small rocky outposes where ancient monks moved to meditate in solitude. The poem is entitled "Pilgrimages."

There is an island there is no going
to but in a small boat, the way
the saint went, travelling the gallery
of the frightened faces of
the long-drowned, munching the gravel
of its beaches. So I have gone
up the salt lane to the building
with the stone altar, and the candles
gone out, and kneeled and lifted
my eyes to the furious gargoyle
of the owl that is like a god
gone small and resentful. There
is no body in the stained window
of the sky now. Am I too late?
Were they too late also, those
first pilgrims? He is such a fast
God, always before us, and
leaving as we arrive.

There are those here
not given to prayer, whose office
is the blank sea that they say daily.
What they listen to is not
hymns, but the slow chemistry of the soil,
that turns saints' bones into dust,
dust to an irritant of the nostril.
There is no time on this island.
The swinging pendulum of the tide
has no clock; the events
are dateless. These people are not
late or soon; they are just
here, with only the one question
to ask, which life answers
by being in them. It is I
who ask. Was the pilgrimage
I made to come to my own
self, to learn that, in times
like these, and for one like me,
God will never be plain and
out there, but dark rather, and
inexplicable, as though he were in here?

We people are not late or soon either, Tom. We are just here. And life is still with each of us, for the time being.

And God, I suspect, IS in here as well.

Subj: Death turned to me and smiled 95-03-29 13:52:23 EDT From: Tom Mandel

Well, I'm back, after the toughest day physically and emotionally so far.

Sit down for the hard facts of life and death...my restaging came back showing that my mother of all tumors has bit into me in a really big way...I have widespread metasteses of the bone (femur, ribs, left shoulder), 10-12 brain tumors (asymptomatic so far), and cancer in my left adrenal gland plus 10-15% of my liver.

I'm going to do a short fast course of radiation at the brain mets and some of the more painful bone mets and then probably a round of taxol plus something else just to take one last whack at the tumor.

My prognosis is, oh, 3 weeks to 3 months, but I would guess toward the latter because of the aggressiveness of my tumor. Sonofabitch is eating me alive!

I'm not sure how much longer I'll be online because it is very painful to sit here and type and heavy narcotics (which I am starting to get into) prevent me from thinking clearly. But I'll be trying to set up a bedside computer operation and should be able to check in from there.

I'm still here, I'm still alive, I still love you all...

Subj: On the parallel road 95-03-29 20:20:06 EDT From: J Swadesh

Tom, you are a wonderful teacher. We all must travel the road that you travel. You show us all that honorable men endure the difficult in honorable ways.

Each of us, caught up in the relatively small problems of everyday life, tend to look away from the larger problem of the shortness of life itself... to leave the problems of the future until the future is here (2). We are all on that parallel road with you. Some of us see and some do not.

Anyway, I'll be here, maybe silent for lack of words, but thinking of you with admiration, with prayers, glad to know you, even through the ether. As will many, many others.

Subj: Re:Tom's story 95-03-31 10:38:28 EDT From: ABSea

A ways back on these message boards, someone (I should take the time to go back and see who) asked a question that has been haunting me since:

Who will tell Tom's story?

My first, journalist's, instinct was to say to myself, "Aha, a book based on these boards, laced with bio material from Tom's life!" And maybe that will happen.

But even if it doesn't happen just so, I've concluded happily that Tom's story is already being told and will continue to be told among us all. So many times I've seen here words to the effect that Tom has changed our lives, taught us something, exemplified something - always something worthwhile. You must know, Tom, that so many people will remember you in ways that 99.9% of the souls aren't remembered.

That's a great gift in itself, one I could only hope to receive myself when my time comes, which of course it will.

WE will tell your story, Tom. You can count on it.

Subj: At Tom's request... 95-04-03 00:09:20 EDT From: TBarreca

...I'm posting this. He wanted to let his beloved friends here know what's going on.

This morning, Tom had a severe bronchial spasm, and was re-admitted to the hospital. He will remain there indefinitely. An X-ray that was taken on re-admittance revealed that the cancer has spread to his left lung. The disease appears to be spreading explosively. Only God knows whether Tom has days, weeks, or months.

I know you guys believe how much Tom sincerely loves you, how much he's enjoyed getting to know you in the time we've all had together. I am sure that you will all join in prayer for a miracle on his behalf.

Tom and Maria both requested that people refrain from trying to call him or drop by. He really needs his energy. But please know that every day either I or someone else will print all the well-wishing messages posted here, and will bring them to the hospital.

Thank you all very much.

Subj: Just so you know... 95-04-04 05:23:43 EDT From: TBarreca

I got back from the hospital a couple of hours ago. Patrizia (PDiL) stayed there tonight at Maria's request (among her many talents is nursing, in which she has advanced degrees). Tom rested fairly quietly throughout the evening, with the exception of one fairly severe bronchial attack. Earlier in the day, he read and enjoyed the posts from here that PDiL printed out for him. Tomorrow his closest family members (aunts, uncles, cousins) from back East are due to arrive. While the request to abstain from calling and visiting remains in place, he loves getting his posts. And there's a small chance that he may log in here for a few minutes if I can get AOL successfully installed on my PowerBook, a task that would be easier if my brain were working better.

G'night, sweethearts, it's time to go-oo....

Subj: Tom is gone 95-04-05 07:23:27 EDT From: PhilipED

Tom died in his sleep at about 2:20 AM, listening to Beethoven's 9th.

Subj: Re:Tom is gone 95-04-05 07:57:46 EDT From: TBarreca

It had been a very rough day. I knew it from this morning when he didn't feel well enough to log in here (yeah, I got AOL installed on my notebook). His lungs were shutting down.

But it was a beautiful day, too. His relatives made it into town in time to catch the last of his lucidity, and that was a blessing of unimaginable magnitude. All his 3D friends were with him till very near the end (with the exception of Patrizia, who was there with Maria till the very end), and all of you were there with us, in a spirit so tangible than I could almost see your tear-stained, but smiling, faces.

The last thing that Joel, probably Tom's oldest friend, said as he left Tom's room for the last time was "Goodnight, sweet prince." A quote from Shakespeare, I believe. Seemed stunningly appropriate and left me in tears as I held Tom's hand.

Subj: Re:Tom is gone 95-04-05 10:04:41 EDT From: BenTrumble

It isn't fair -- because he died in Spring. When life is meant to flourish, we're told, not, to wither away. April, at the end of the rainy season. Twenty years to the day after my grandfather died I realized when I got the call. There were azaleas flowering in Charleston those decades ago, there were azaleas in Palo Alto just last weekend.

So Tom Mandel, who was once a warrior, has lost his battle to pathology. Marine -- Iconoclast -- Futurist -- Friend. I have never understood Death, though I have seen a lot of it. Death does not know the irony it creates. Tom Mandel spent his years taming the c-space where we build our virtual worlds, homogenizing the bits and bytes, smoothing the way for reign of information... I wonder now -- was Tom the last bright star, the last rough voice, the last original we shall meet here? Was he too good at what he did so well?

Tonight my heart shall wander with the lost souls who gather somewhere in the darkness of San Francisco, when the mist rolls in through the Golden Gate Gate, when the the fog horns sound. Tonight my heart shall huddle beneath its cardboard blankets, homeless -- because its world has somehow changed.

I miss him already.

He never stopped fighting.


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