The Kindness of Strangers: Social Media’s Power to Help & Heal

May 11, 2009 Hungarian writer Robert Zend once said, “There are too many people, and too few human beings.”

I’d normally agree, but I guess media is shifting my frame of reference a tad, as this is the second time in recent months I’ve been overwhelmed by social media’s unique ability to engage, inspire and come to the aid of a total stranger with empathy sans motivation.

The first time was when fellow Age of Conversation co-author Marcus Brown launched “I Care and I think you do too” a social media campaign for a single mother suffering from cancer in central Germany, struggling to bring up her two children. She was disheartened by the lack of light at the end of the tunnel and felt like no one gives a rip. (which cancer survivors know, can be the kiss of death in socio-emotional support circles)

He placed it in a compelling context, “I’m not going to ask you to donate money. I’m simply going to ask you to give a damn…I’m going to ask you to stop for one minute and think about how you would feel in this woman’s position. I’m going to ask you to stop worrying about the economy, your RSS feeds and how many people follow you on Twitter or Facebook…I just want you to show this woman that you care. You can either upload a picture of yourself to flickr or your blog and let her know you care.”

I don’t know where all of our family photos are in the stream, (that was my daughter previously) and frankly, ‘I don’t care’ but I DO care that the woman impacted with a profound lack of hope has been boosted by an outpouring of sincere thoughts from all ages and stages around the globe to uplift her spirits and let her know that total strangers in fact DO care…

“I care” as a movement could use some suction with far-reaching tentacles on many levels; after all, there are many willing to extend a hand even when they’re in quicksand themselves…(think economy, community, crisis mode, disaster relief, it all brings out some of the best attributes in people!)

Which brings me to my next ‘stranger’ story…My own loss of my beloved dog Annie, one week ago today, to be exact, out of the blue.

One day, tennis balls, swimming and a bit of a gimp thought to be arthritis, the next day, ‘bone cancer, osteosarcoma, amputate or die.’ Perhaps I should say, ‘amputate THEN die.’ As the outcome and prognosis was anything but good…(yes, that’s me hugging her in her last hours as my daughter snapped and sniffled behind the iphone)

In one of those “best of times, worst of times” Tale of Two Cities Dickensian moments,  my heart broke, but my faith in humanity soared, inspired by the outreach of total strangers when faced with a decision that wasn’t even in the conversation a week prior.

Imagine having 48 hours, ‘a weekend’ to decide the fate of a family member that you adore…desperately searching for factual data and multiple sources and second opinions and firsthand input…

Whether it’s a health diagnosis for yourself, a senior/sandwich generation scenario, a child in need or a canine/kitty companion…the ‘virtual’ support from afar can be tantamount to getting through an emotional sea change. (e.g. MyVetwork.com for military outreach, The Motherhood for community neighborhoods)

There’s just something comforting to hear from a ‘been there, done that’ tribe, whether you know them or not…because it immediately forms a bond of compassion and data-sharing without the emotional baggage of those ‘too close’ to the given event to weigh in without the ‘shock and awe’ factor that often worsens a situation. (e.g. those well-meaning folks that want to ‘help’ and they end up blubbering basket cases that you end up consoling in addition to your own grief)

Therein lies the genuine beauty of social media’s acquaintance-based information sharing in the collective data pool of life…The ‘what do I do’ questions are personal, but resolute…You’re seeking analysis of knowledge and solutions, over conjecture and judgment.

So I write this with bleary, teary eyes, still puffy a week later, to remind myself that there are OTHERS out there who will be faced with this decision, and may need this information regurgitated in one spot.

After all, it seems like only yesterday when Annie’s brother, Bill left the building, and I wrote this post about how to cope with kids’ grief, amidst loss.

This time, my daughter wanted to ‘be there’ for it all. Euthanasia, the last breath, the works…(she wants to be a vet tech, so this makes sense at almost 14, but I still had that ‘sheltering’ sigh of wishing I could protect her from the pain)

Every dog we’ve had has left the planet in my arms, in the comfort of my voice, with all family members out of the room, as I’m ‘trained in these kinds of things,’ not to mention a tough ol’ bird, having been through some surprising sinkholes on the road of life.

She didn’t understand the outreach to the social media corridors at first,

“Wait a sec, mom, you’re gonna ask a total STRANGER for advice; how do you even trust that?”

I tried to explain that it’s part of my ‘critical thinking skills’ toolbox, to balance rhetoric and reality sans vested interests, but she just couldn’t grasp the concept of some faceless entity weighing in on ‘what to do’ with our dearest golden girl…In THAT sense, I suppose I’m more of a ‘digital native’ than she is…

Interestingly enough, some of my closest face to face friends were not only ‘absent’ but deafeningly quiet, almost like, ‘whoa, we KNOW what Annie means to her, better steer clear, cut a wide swath’ whereas the online presence of people DON’T know, and had the requisite distance to offer logic and reason with unguarded warmth and empathy to boot.

No worries of ‘should I say this or that’ just ‘put it out there’ one human being to another, shielded by the anonymity of being a stranger, yet ironically, brought together by intimacy and shared purpose…

So to those who ‘pooh-pooh’ the ‘virtual’ connection of human contact, let it be said that the online presence of those who have shared similar circumstances brought to me a support system of unprecedented factual data and in some instances, perpetual ties to what it means to be sharing the same planet.

To give you a feel for the depth of this experience, I’ll share one particular instance via our NextNow Collaboratory when we attended the Santa Cruz summit, headed up by leaders like Bonnie DeVarco, (see Bonnie’s Stanford Media X exhibit on visualization starting next week through year’s end!) and NN Co-founder Claudia Welss, Eileen Clegg and Regan Caruthers, etc. In this case, the “friend of a friend” Laurie Lehman arrived with none other than Mr. ‘human glue’ himself, NN network champion, Bill Daul.

Bill must’ve put out the word to a few self-selected collaboratory crew that I was facing a tough decision, because within 24 hours, I received this note, all in lower case like a stream of consciousness care package that warmed my heart…

…“bill just said that your girl, annie, has cancer and that you lost another dog last year.  i understand what you are feeling, i believe.  two years ago i had 5 dogs, and in one year i lost 3 to cancer, two just 10 days apart.  they were 10 and 12, son and mother, and my 11 year old boy who was diagnosed and died within 10 days. i have two now, 3 and 7.  i am so sorry for your earlier loss and what you are dealing with now.  my heart hurts for you.  i still miss my 3 very much, and i am grateful every day for the two i have still with me.  i almost lost my younger boy 10 months ago when he was hit by a car and almost died.  but last saturday, he won his first point in the show ring – his back legs were both injured terribly and i didn’t know if he would live, much less walk or run, so this was a true miracle for me.

i am really good with dog medicine and care, if you need some help or information about pain control and what is possible and works – also about surgery and treatment or i can get information for you.  i also have good friends who are vets and share information with me quite generously.  i also have vets i like, though they are in Gilroy and Santa Cruz – I live in Hollister. my thoughts are with you, and i am so sorry you are having to go through this.  it hurts so much.  if you want to talk, my cell is xxxxxxxx and you have my email now.  anything i might be able to do to help, even just talk about it, please don’t hesitate to get in touch. i don’t know your annie’s situation, but please make sure you work with a vet who will provide good pain meds.  if you don’t have one, you should find someone with a specialty in oncology or internal medicine at a good clinic.

when my atreyu came home from his major ortho surgery, he was given 75 mg tramadol 3-4 times a day AND an nsaid – and a sedative if needed.my personal tramadol dosage was 50  mg twice a day, and atreyu weighs 50 lbs., so that dosage was huge in comparison and didn’t totally knock him out.  he needed it for at least two weeks.

when my whippet came home with a badly broken leg, she had a fentanyl patch on and a full nsaid dosage after iv morphine.  some vets are just better with pain control, but it sounds like you’re doing the best thing this morning.—please keep me in the loop.  i’m thinking good thoughts for you both.”

A total stranger who doesn’t know me from Adam, is reaching out to help in a time of need? It was one of those media moments, like the “5 People You Meet in Heaven” experiences, where you cross paths in life with someone who alters your worldview and shifts your consciousness to a different level.

In this case, Laurie Lehman not only reached out TO me, but also FOR me, posting on social media sites and list serves with dog lovers, vet techs, animal pros and experienced caregivers of all kinds offering an ear, a shoulder, a cyber hug from afar.

She could’ve easily left it at ‘I made an overture,’ and called it a day…but she followed up with, “Hi, Amy, I just wanted to check in to see how you and Annie are doing.  How did the oncologist visit go?”

I’m not a ‘leaner’ by nature, but I really WAS conflicted with the decision options and found myself responding that night:

“Hey Laurie…It was too late to call by the time I got my teary daughter to bed just 30 min. ago! Are you around tmrw. by chance? I actually WOULD like to chat for a jiff as I weigh these tough options, as it is indeed osteosarcoma, back leg/bone, $1000 tests revealed no metastatic evidence elsewhere via xray, blood panel or ultrasound (yet) 6 mos. ‘median’ projection of survival post amputation per the websites?

“Doc says that’s a median so it all depends; and it’s thread-bare and could snap at any time…She’s not weight-bearing at all…just tiptoe-ing on the other three paws…(or practicing to be a tripod, finances willing) Which is another story altogether…another $4000+ or so…Would love to snag you for a quick debrief if you’re able? Thanks for the thoughts…Very kind of you…Gonna go soak my head in the bath…Best, Amy”

Her reply? Again, keep in mind we don’t KNOW each other, but are growing more intimate via this online exchange of emotions…

… “oh, damn, i’m SO sorry!  i don’t know what breed she is -how big?  what a miserable situation for all of you!  i know the terrible thing the $$$ causes – I swear I will not add another dog until I have some assurance I can afford the not so rare horror story.  Atreyu’s surgery/icu/post-op care was around $5,000, and my son helped and took out the Care loan, as I was simply beyond the capacity in every way to manage.  But, you can/could choose a longer time to pay it off, though the interest jumps up at 6 months.  I was able to simply write a check for that amount for my nova just a couple of years prior…how old is annie? —cancer and dogs seems just out of control these days.  it’s just everywhere.  yes, feel free to call me – if i can’t talk right then, i’ll call back as soon as possible.  i can usually just take a walk outside when i want to.  what’s your number? have a good bath and maybe some wine.  i’m sure you’ve already had plenty of tears…Laurie”

Then I started getting bold and ‘cc’ ing her on my questions to the surgeon/oncologist as I almost felt as if Laurie could give me the ‘straighter scoop’ with her social media specialists even more than the specialist veterinarians…Her replies are in italics.

My questions:

If we do NOT go with surgery, how much relief could she get with the pain meds if your report says ‘2-3 mos.’ survival??? (e.g. quality of life issue) Or is it better to ‘put her down’ sooner rather than later…(selfishness factor/human need for emotional support vs. dog’s need to pass peacefully)

hi, amy, i think you will know if the pain can’t be adequately controlled – there wouldn’t be any reason NOT to go to the most potent drugs available to keep her comfortable.

AJ: The oncologists recommend chemo, but again, the quality of life issue is in play…(hers AND ours, as we’re heavily strapped economically) Would she be ‘sick’ during her IV doses and feeling ill/nausea? I’m wondering how much getting to it fast/amputation will minimize trauma?

“They” say that chemo is not supposed to make the animal as ill as it does humans – or they just tolerate it better. BTW, my sister had the same surgery it sounds that your mom had about 5 yrs ago with no chemo.  She was 59 and is now 65.  Our mom died of lung cancer at age 76, a year after diagnosis.

Vet Rx notes: Please feel free to increase her pain medications over the weekend. The safe dose range for tramadol is 1-3 tabs every 8-12 hours. Go ahead and bump her up to 2 tabs every 8 hours. The Rimadyl can be given twice daily, so bump her up to 75mg every 12 hours. She should be off Rimadyl for 48 hours before surgery. The tramadol can continue. The family will discuss the plan of action for Annie…

See the note on Rimadyl being discontinued 48 hrs prior to surgery.  And it looks as if they have given you the go ahead to bump up the tramadol quite a bit, which she will need for sure after stopping the rimadyl. Please let me know how it goes today. Hugs to you all, Laurie

Hi, Amy, I just asked on one of my dog lists about experience with osteosarcoma and received these replies within a short time, one is both a friend and vet and her suggestion should be helpful…I’ll forward any additional ones that are worthwhile. Oh, and pics of my two guys for you. Best, Laurie

Again, she has extended herself and opens the door to yet another flood of expertise from vet/dog lover list serves…

For anyone who will ever go through this osteosarcoma dilemma, I’m posting the forwarded conversations and omitting names, since, again, they’re strangers and I don’t have permission to repost except from Laurie…so here goes!

If it helps even ONE person down the line deal with this nightmare, let it be so.

Subject: Canine Osteosarcoma Question
From: Laurie Lehman:

A friend has a 10 yr old Golden with osteosarcoma – just diagnosed.  All tests show no spread – blood and ultrasound. The dog is otherwise healthy, but the bone is very thin and the vet is concerned that the leg might break if nothing is done.  It is a back leg and she already isn’t bearing weight on it but gets around ok that way. The vet said median survival post surgery is 6 months. My friend is willing to have the amputation done, but wonders if that is the kindest thing for her dog. Any thoughts – experiences?

Answers:

I had a Chart Polski (Dx’d at age 6 years old) with Osteo in a rear leg; no spread to lungs seen at time of Dx.  – hah!  rarely is that the truth down the line.  Amputated.  The first 3 days were a little rough, but within 2 weeks he was back to normal and I couldn’t catch him he was still a happy guy completely out of pain and his happy self, running around chasing his ‘girls’.

Even with chemo, he only lasted 8 months; metastasis to lungs by then. Up until the last week or so, he did well.  He even scratched at the door with both front legs to ask to come in!  A good balancing act! I’d amputate again in a heartbeat if the dog was otherwise ‘healthy’ (relatively speaking, other than likely terminal cancer) and strong in the front or rear, wherever the bad leg was.  It removes the pain of the tumor. I am very happy I made that decision.

Many dogs live at least this long w amputation and w/o chemo from what I hear.  He was not that lucky. Of course (the veterinarians) will have the real scientific scoop. My heart goes out to your friend :o( Osteo really really really sucks.

From a revered vet on their list serve:

Tell her to go to www.veterinarypartner.com and enter “osteosarcoma” as the search term – complete details, including accurate survival times for various treatment modalities there.

If there is no amputation, dogs don’t live very long at all, and the pain gets very terrible very quickly (unable to be controlled).

I agree that dogs mentally and physically do very well with amputation (unless they are big, heavy Rotties with arthritis, etc), even the sighthounds (I’ve seen quite a few greyhounds with amputated limbs, and they don’t seem to even know they are gone -and they are still fast! )

The owner should speak to an oncologist if they can regarding chemotherapeutic options, and move quickly with a decision.  Accurate staging before decisions are made is very important.

The best outcome for this dog is amputation AND chemotherapy, as yes, there are always already microscopic metastasis to the lungs (we just can’t yet detect them).

From Laurie in response to list serves:
Thanks, all!  Amy was at the veterinary oncologist yesterday and they suggested amputation plus single drug chemo after 3 weeks. The only options seem to be amputation or euthanasia because of the thinness of the bone and increasing pain.

Sensing my growing ambivalence, almost by osmosis, she sent another note, adding a kind alternative to lighten the load of my frustrating conundrum…

“Here come some more list serve comments…

…And please don’t think for a millisecond that I would think any differently of you if you decided on euthanasia instead!  I have no idea what my choice would be if faced with the same situation.  As someone said, it is a crapshoot and you might gain nothing or very little or you might be lucky and get a good amount of good time together.  Such tough decision we must make, and I also know how painful and traumatic they are when you’re just not sure what the “right” thing is.  In the end, I believe that the right thing is to protect them from unnecessary suffering, and you would be doing that either way, Amy.—Laurie”

***********

Another pet owner replied:

“I believe that the only effective thing you can do that will both
alleviate the pain that comes with ostesarcoma and the frequent cases of spontaneous breakage is to amputate the affected limb. Or euthanize within a short period of time which isn’t a likely choice for most in the situation described.

They (experts) say that without any chemo and/or radiation it’s 6 months, and with it up 1-2 years or thereabouts. You’ll hear varying lengths of survival time with either treatment choice, so it can be a crap shoot. I think dogs adjust pretty quickly to losing a limb. So that would not be an issue for me unless the dog were frail, elderly, orotherwise compromised.”

************

”A friend has a deerhound who had osteo which hadn’t spread, she had her front leg amputated.  Darcy is now 18 months post diagnosis and doing well, yet I also know of a greyhound who had the same, amputation and have only lived for 6 months after the op but I don’t remember that he had chemo. Darcy did have chemo following the surgery, she has just had her 6th birthday, a day her owners never thought they would see.

***I think it varies quite a bit.  I’ve had them live six months to three
and a half years (dog did not die from cancer) post-amp, the average being
around a year.  I don’t use chemo, but I do use a variety of holistic
treatments, the gold star being IV C, but it’s expensive.  I really think
you have to make the decision to amputate or let go, it becomes too painful
without amputation.”

From the veterinarian again:

Info from the link I posted (veterinarypartner.com)

– Median survival time for dogs who do not receive chemotherapy for osteosarcoma is 4 to 5 months from the time of diagnosis regardless of whether or not they have amputation.  59 days if it’s already in the lymph nodes.  Pain will cause euthanasia very quickly.

– Amputation, radiation therapy and drugs are used to control pain

– If one decides to treat the osteosarcoma, survival rates go up markedly (amputation is not treatment, it is pain control):

Cisplatin:  median survival time 400 days.  Survival at 1 year: 30% to 60%   Survival at 2 years: 7% to 21%

Carboplatin:  similar to cisplatin

Doxorubicin:  median survival time is 365 days.  10% still alive at 2 years

Doxorubicin and Cisplatin in Combination:  48% survival at 1 year , 30% survival at 2 years, 16% survival at 3 years.

(all the above take into consideration, but are affected, by things such as age, condition at diagnosis, other disease (kidneys, heart, etc)

The most effective treatment with best results is clearly amputation if in a limb for pain control, and a doxorubricin/cisplatin chemotherapy combo to treat the cancer.

(Again, depends upon how the animal presents, how long dog has been lame or sick before being brought to vet, etc.)

Thank you to all of you who have shared their information and experience on this subject.  My friend is still trying to decide what is best to do – mainly for her adored dog.  It is truly a difficult decision, I realize.— Laurie

**********

You might want to have her look at the Navy Protocol, named after Navy,
a Golden whose owners did not want to amputate, and a success story.  My
greyhound who beat osteo was on the Navy Protocol but only for two months because he couldn’t tolerate Celebrex longer.  After that, he was switched to alternative supplements.  She might want to take a look at this bone cancer document which also has a link to the Angiogensis Foundation.

And another follow up from the veterinarian on the list serve:

“Just to keep in line with being the wet blanket:   The “Navy” protocol (anti-angiogenesis – AMAS – protocol) was initiated experimentally at Tufts in 2002 or so.   A handful of dogs were treated.  One dog “responded”.  But that dog had never been accurately diagnosed as having osteosarcoma in the first place. The AMAS protocol has been abandoned as a possible treatment consideration for osteosarcoma.

Tufts does not endorse it as a valid or effective treatment option for osteosarcoma.   It is considered to have a very high toxicity level, with great chance of inducing internal or spontaneous bleeding, and no proven effectiveness. Years ago, anti-angiogenesis was a promising possible cancer therapy option that since has never lived up to it’s promise or hope, unfortunately.”

**************

So you see how this social media community collective knowledge hub moved me so? (yes, it applies to media/serious games, health 2.0, VW networks and other edu-blogger list serves too, I realize)

These are just a few of the tons of resources that flooded me…Total strangers.

And Laurie not only was ‘with me until the end’ when I made the decision to let Annie go on Monday (Annie began panting heavily over the weekend and by Monday was not walking on it at all, which could easily mean she fractured it and couldn’t get past the pain) Laurie sent a comforting column from a dear friend of hers, condolence notes and photos of her own animals, to complete the circle of our shared experience…all virtual, mind you.

This astounds when one thinks about the people you ‘meet’ and never get to know. After all, we’d ‘met’ at the Santa Cruz event but never ‘connected’ in person…there were tons of people there and only time to chat with a few between sessions.

Little did I know the same lady I’d passed a cup of water to would be the one who would help me say goodbye to my beloved sidekick who was never a step away from my bod.

Yep, a week ago today I lost Annie, but I found a renewal of hope and promise for human beings helping one another with selfless compassion.

I wrote:

“Dearest Laurie and Bill…I’m huddled up at the outpost apartment with my daughter on a futon at my feet because neither of us can bear that big ol’ empty bed without her by my side…at least not the first night…I can’t thank you enough for all of your support and kindness with your outreach in such a lousy, difficult time.

I’m actually going to write a blog post compilation of the important data you shared from the list-serves and your pals, (won’t mention names, except yours, if I may?) because it’s a fabulous example of social media connectivity getting info into one’s hands on important decisions when the clock is ticking at 48 hours until ‘D-day’—The decision here was multi-fold…Annie took a turn for the worse this morning (I believe the bone shattered) as her panting and pain increased and she went beyond ‘hiking it up high’ to not wanting to move much at all…so I took the day off to just hold her and feed her all her faves, and pulled K out of school an hour before the doc came, as we slated it for 3:30 and I knew she’d never be able to process the accelerated timeframe without being a mess…

As it IS we’re a mess…puffy, teary, red and bleary…sigh. But I can’t thank you enough for your kindness…and will try not to sink into a pity party, and instead celebrate her life…just not quite ready yet to ‘deal’ with not hearing her ‘tic-tic-tic’ nails on the hardwood Pergo flooring, or returning home to have silence instead of a trill and a wag of excitement and loving welcome…

She gave me so much…for so long during these last few years of turmoil…and I know I gave her unconditional love beyond words for a fabulous ‘act two’ in life…so I hope someday I’ll achieve a similar level of love in my own wacky world. Meanwhile, thank you again…and hugs to you both. With all my love, Amy

Laurie responded with sympathy, empathy, a story to bring a smile and a sincerity I haven’t felt in a long time online OR offline.

It was a refreshing hug from humanity…a gentle, genuine renewal of faith that not humans are not predominantly car-honking, finger-flipping, road-ragin’ nimwits with the IQ of an eight ball, it just FEELS that way sometimes.

“I am so terribly sorry, Amy, and please pass on my condolences to your daughter.  It was good that she was able to be there, and that your vet came to the house instead of you having to take Annie there.…Annie was kind and made the decision for you.  She knew what the best thing was while her humans struggled with the various possibilities.  She left you with no doubts about what had to happen – what a great gift.  The pain is no less intense, but your decision will never be in question in your own mind.

…My Merlin was a thief, and he most loved to steal food.  He could open anything – doors, drawers, cabinets, ovens, the refrigerator, and he did.  I had to keep a baby lock on the frig, and he would listen closely each time it was opened and closed just in case it didn’t close and lock…The last 10 days of his life, I bought and cooked all his favorite things – beef strogonoff, watermelon and angel food cake.  He had those every day.  That made him pretty happy.   When I took him to the vet the last day, I ran back in the house and grabbed the last big hunk of angel food cake and put it in a plastic bag to give him there.  When we arrived, I left him in the van and went in to ask the staff just to come and get me by the side door – I’d wait in the van with Merlin.

I was only gone a couple of minutes, but when I opened the van door and started looking for the cake, it was gone!  Then I looked in the back and there was Merlin with the bag, crumbs all over, eating every last bit he could find after stealing the bag off the front seat and tearing it open.  His last act was to steal his favorite food and gulp it down. no doubt thinking how smart he was to get it all before he was caught, and having such fun doing it.

I was so happy to have been able to give him (and to receive from him) that unexpected gift and to see the joy on his face at getting away with something again.  The two of us went in and he, too, was able to lie with me on the floor on a big blanket as he went to sleep for the last time.

Please, if you have any photos of Annie, send them.  I’d love to see her.  I know how sad you will be for quite a while.  Losing them is a tremendous and terrible thing, and we mourn for a long, long time. Sadly, Laurie”

Well, Laurie, in this blog post you’ll see many, photos of our last moments with Annie…

What you WON’T see is the uplifted heart and spirit within me knowing that people like YOU on this planet are healing and helping total strangers…

Just think…with collective knowledge and the proper tools, outreach, aid, and distribution channels of this powerful medium for positive change, social media could lend a hand to so many simply by saying, “I care. And I think you do too.”

I can almost see Annie wagging with a tennis ball up there somewhere happy to see that humans are actually capable of extending copious quantities of unconditional love and caring too…

George Bernard Shaw said,

“Only on paper has humanity yet achieved glory, beauty, truth, knowledge, virtue, and abiding love.” Clearly, George never met Laurie Lehman and her social media canine compadres…

Thanks to all who believe in random acts of kindness…I’ll be forever appreciative of the peace they brought me with my decision.

R.I.P. Annie girl.