What to say and do....and NOT!!...for a cancer FRIEND (not patient)!

I have been asked about this a few times....and thought about it a LOT!!!  I don't think any one person can speak for everyone, nor be an expert on what any other person would like, feel or think....but here are my thoughts:

Do NOT ask:  "How are you feeling?"   Sounds benign, right?  IT ISN'T!!!!  The answer you will most likely be given is, "Fine."  And once you hear that, you haven't really learned anything, have you?  The truth is far more likely to be, "Like utter shit, left out on a hot day, to steam into a lovely confluence of horror filled with flies!!!"  OR.... "Frightened out of my mind.  I don't know what to do. I don't know what is going to happen to me, my family, or my life.  I feel literally scared to death, except cancer will probably kill me first!"  Now...if you were to get either of those HONEST answers....what are you going to do with that?  Better to be real and specific.  If you are, you will get a more meaningful answer and show you really do care.  Examples:  "Is your surgery site causing you too much pain?"  "Have you had any bad flares of your arthralgias?"  Keep it pertinent to what your cancer FRIEND (NOT cancer PATIENT) has already told you.  And, whatever they answer....  If negative, meaning they are still experiencing pain or other difficulties....say, "Oh, I am so sorry."  If they are feeling better...say, "Oh, I am glad!!"  Either way:  MEAN IT!  BEST:  If you really want to know how your friend is feeling emotionally, ask that...specifically!  "Are you feeling afraid?"  "What is worrying you the most?" Expect that they may not answer....because they may feel that to admit fear or negative thoughts would frighten you or indicate weakness.  But, they may give you an answer that will hurt your heart.  Whatever it is, you can not fix it!  You CAN hold their hand and let them say it.

Do NOT say:  "Have you tried prayer?  ...more vegetables?  ....this diet?  ...that cream?"  All of those options are highly unlikely to cure your friend's cancer and imply that they either did something wrong or inadequately to get cancer in the first place or are not doing the right things to get rid of it now!!! Better:  Ask what your friend has been advised by their doctor or where they are in their workup process.  This way, you seem interested, in tune, and can learn how to help your friend by understanding where they are in the madness that is cancer treatment.

Do NOT say:  "It could be worse." Well maybe so, but seriously???????

Do NOT say:  "I know just how you feel."   No you don't.  Even if you have had cancer yourself.  You DO NOT know how your cancer friend feels!

Do NOT say:  "Think positive..."  OR:  "Put your faith in God...."  "....and you'll be fine."  If you are saying these things to your friend...they were probably already a positive believer.  They still got cancer.  Their faith and positivity did not protect them.  Further, amazing folks with the most positive spirits and trust in God die of cancer everyday.  I know, you mean well...don't know what else to say...and your friend probably will, too....but I'm telling you what they are thinking...so, just DON'T!

When you are lucky enough to coax your cancer friend to tell you their treatment plans or options.... Do NOT say:  "Oh goodness! I just don't understand that stuff!"  Never, never, say that.  EVER!  Because, about 10 minutes ago, your friend probably didn't "understand that stuff" either!!!!  If you really care, you can learn!  The Internet is an amazing tool and you CAN learn what you need to help your friend.   My sister, Ruthie, I learned sometime after the fact, sat with a medical dictionary when she first learned of my diagnosis and treatment options until the things she read, or that I sent her, made sense.  If you really don't think you can learn or understand what your friend is sharing with you....keep it to yourself!  Say instead:  "You are so amazing!  Dealing with all of this and working so hard to learn all this new information.  I am impressed." Better:  Do your homework.  If your friend can learn what they need to, so can you.  EVEN better:  Some cancer friends really do NOT understand their diagnosis and treatment options.  HELP THEM!!!!  Find resources and support groups.  Learn what you need to yourself and share with your friend.  Go to doctor appointments with them to help them listen, understand, and remember what was said. When you are the patient - emotions and pain and fear make comprehension and the ability to remember all that the doctor said very difficult.  Even with fairly good health and my background in medicine, I had trouble keeping it all straight!  Not having B or Ruthie there to help me at appointments would have left me very confused!

Do NOT say:  "You don't look sick."  While that may seem nice, it is also very strange to hear (and even see in the mirror) when you are dealing with a cancer diagnosis.  If your friend thinks you are a nice person, deep down, they will think you just aren't thinking and are trying to give them a compliment.  Else wise, they are going to think you are not appreciating their reality at all!  BETTER:  "You look pretty (handsome) today."  Because when your cancer friend really doesn't LOOK sick, they still FEEL that they are damaged goods.  Their body probably has scars that they do NOT think are lovely, even if YOU and the world in general can't see them.  They know aberrant cells may well be running rampant in their body and that is NOT the picture of health!

My best advice for you to help your cancer friend:  

Listen.  Yep.  Just be quiet, hold their hand, and LISTEN!

Give a hug.  An easy way to say a lot of nice stuff without having to speak at all!

Make plans for fun stuff THEY like.  Friend likes to garden, but is too sick and tired to do it themselves?  Pull up a chair in the shade and have them watch, supervise, and chat while YOU do the weeding.  Friend likes to read? Read to them.  Scary thoughts, pain killers, pain itself, can make focusing on the written word hard for even the most ardent reader.  Trust me, I thought after all my many surgeries..."Well...I'll just catch up on my reading."  Nope.  Not an option like I thought it would be...but almost all readers love to HEAR the words, even when we are not feeling our best.  Friend is a movie fanatic?  Rent a movie, bring popcorn, a comfy blanket and curl up on the couch with them and their favorite flic.  See????

Help!  Really, actually help.  Double a recipe when you are cooking your own dinner and bring it over ready to eat or freeze for later.  When at the grocery, call and say...."I'm already here, the strawberries look nice.  What else can I pick up for you?"  Mow their grass.  Clean their house.  If you can afford it, hire a maid service for them.  Arrange to take their kids to soccer practice, dance, or just to the park.  Parents with cancer feel like the biggest schmucks ever.  IS there a bigger burden to put on your kid?  NO!  Help them out.  Help them keep the lives of their kids as normal as possible.  THAT'S what they want....believe me!

Find the fun.  This one is not easy.  And you have to take the lead from your cancer friend.  But, when you can laugh with your friend, you have really done something.  Laughing at the crazy nuts you deal with in cancer care is essential.  The circumstances are often demeaning and ludicrous.  If you make your friend smile, you have given a gift that is unparalleled.  I still smile when I remember the pic a friend and fellow nurse of mine (Loooove you, Tammy B!!!) sent me of herself ON the potty (No!  I saw no parts, but I knew the room, the wall paper, the level of her head) while at work when I was getting injections and infusions miles away!  Not saying that would be the best thing to send to YOUR friend, but it worked for me!!!

Find a code, an inside joke or story....that builds camaraderie around what is now part of you AND your friend.  You know how close friends and family have stories about..."That time when....."  You know what I mean?  How when you have spent time and love and laughter with a dear one...you can just say one word...with a little look...and the whole story is clear...and you will both break into laughter or tears?  Well, the cancer experience needs that, too.  It is hard to predict how it will come about...but use it once it's there!

In my life and then cancer story, the issue of "HOPE" was a big deal.  Rosie used it via the dragonfly, the last thing to escape Pandora's box...hope flies on dragonfly wings...to tell and share her side of the cancer story.  The dragonfly is now a touchstone, signifying hope and love, for many of those dear to me.

Brent found a sweet and touching way to deal with and mark off my treatments as they were completed, especially when he could not travel with me to get them.  PIE!  Frozen apple pie, that he would reheat in the oven just before I got home....carefully cutting away the appropriate amount, but leaving "1/2 DONE!" or "3/4 DONE!" as we made it though.  Ruthie and I came to depend on those to light our way to progress.

Ruthie saved up stories of her week to tell me while I was getting noxious treatments....to take my mind off the pain and misery.  Sometimes she even had notes!  Her boys would even contribute..."Hey, Mom!  Tell Aunt Celeste about....."  It was wonderful.

We made up somewhat terrible names for hospital, airline, hotel, and car rental personnel.  Pilling sweater woman worked check-in.  Saggy booby lady  was weird and worked in one of the labs.  Baldy drove us nuts at car rental.  Frank (I think that may have been his real name, actually) seemed afraid of us at the airline check-in.  There were many more.  Maybe I'm just weird, but it gave me something real...a connection of understanding....to a friend...in a surreal and rather horrible circumstance.

So....just be a friend....to your cancer friend.  Be the person they already made friends with.  They need that now, more than ever.  And incredible thanks, to all my friends and dear ones, who continue my journey with me.  Love, c

ASCO 2017: Friends in need are friends indeed! Here's to the caregivers!!!

I do NOT believe in blaming the patient (their diet, stress, attitude, etc., etc.) for the development of their disease process...much less death!!!! I do believe in hope.  I believe in finding joy in every thing we can and living every minute of life to the fullest.  Play hard. Work hard.  Love and laugh even harder.  Those were my abiding principles before melanoma and they continue to be so now. However, as I've noted before, my belief that you can emote yourself out of cancer falls more along these lines:

I wrote this in 2012 ~ As much as we would like to truly believe that positivity can overcome anything and some studies demonstrate a beneficial effect from the "laughter is the best medicine" sort of thing.  Many books and studies out there prove otherwise. David Rakoff,  the incredibly funny, journalist and writer (1964-2012) talks about many of them in his book "Half Empty".  He experienced 18 months of chemo and radiation at the age of 22 when diagnosed with Hodgkin's disease, only to have a tumor that eventually took his life recur in his shoulder and metastasize.  Perhaps, he said it best in an interview with John Stewart.  "There was a study that showed that the long term mortality of people with lousy attitudes is no different from people with great attitudes.  So, you can be the worst bastard on the ward and you will not die at any greater rate than the other people.  People will simply be gladder when you do!"

On the other hand...going it alone in life is never easy.  And a cancer diagnosis can be extremely isolating.  There are scans and procedures which you must endure alone...even if there is someone who really wants to be by your side.  There are dark thoughts that are very difficult to share. And, some folks just can't (won't!) stand alongside to help you handle it.  I have found incredible solace and support in many of my dear ones, but I have also lost some I would have previously bet on to be my greatest advocates.  It hurts. And it happens...fairly often.

Now, there is this:

The effect of loneliness on cancer mortality.

ASCO 2017. J Clin Oncol 35, 2017. Dilppolito, Ambrosini, Shams, et al.

Background: Convergent findings indicate the need of broadening the vision of cancer beyond known prognostic factors, as many variables of different nature equally affect the course of disease. Loneliness has been found to be associated with various health outcomes, but its relationship with cancer remains unclear. Here we aimed to investigate the specific effect of loneliness and other demographic, psychological, and clinical variables on cancer mortality and to validate the Italian UCLA Loneliness Scale in cancer patients. Methods: This descriptive and correlational study was conducted at the Veneto Institute of Oncology in Padua. 400 patients undergoing chemotherapy from 01/2014 to 06/2015 were enrolled. The sample was stratified by sex and age (4 groups, 40-80 y). We collected demographic, clinical (site and stage of cancer, type of chemotherapy, death date), and psychosocial [self-esteem (RSE), perceived social support (MSPSS), social interaction anxiety (SIAS), personality (EPQR), and depression (BDI)] data. Results: GLM analyses: loneliness was higher in women than men and it linearly increased with age. Loneliness was also influenced by marital status, cohabitant offspring, and educational level, but not by clinical variables. Correlation analyses: loneliness was inversely related to RSE, MSPSS, and extroversion, and directly related to SIAS, neuroticism, and BDI. More importantly, a hierarchical binomial logistic regression revealed that patients’ mortality was reliably predicted by gender, stage of cancer at diagnosis, time from diagnosis to UCLA collection, BDI, and UCLA. In particular, high BDI predicted higher mortality; surprisingly, after controlling for BDI and other effects, high loneliness predicted lower mortality. Conclusions: Our results replicate prior research and reveal a surprising association between loneliness and mortality risk after partialling out the impact of, especially, depression. This suggests the role of loneliness on cancer course as an important health concern.

In this study, 400 peeps on chemo were evaluated utilizing demographic date (age, sex, marital status, etc...as well as stage of cancer) along with psychological data that scored them re:  self esteem, perceived social support, anxiety in social settings, personality type, depression and loneliness. Loneliness was higher in women, increased with age...was also influenced by marriage, children living in the same home, education (I presume folks with those things were less lonely, but that is not specifically stated), but NOT by clinical variables.  Folks who were extroverts with higher self esteem and greater social support were less lonely while those with anxiety, neuroses, and depression were more so.  No surprise there.  However, mortality was reliably predicted by gender, cancer stage, depression and loneliness.  Of course, if you were very ill physically, it would be hard NOT to be depressed!!  In fact, when the researchers controlled for other effects and just looked at loneliness vs depression...depressed folks still had a higher rate of mortality, while those reporting loneliness did not.

So....what does all this realistically mean?  Being ill is hard, lonely, and depressing.  The person affected doesn't feel good, faces a barrage of treatments that at best are: confusing, time consuming, expensive, often miserable and painful - while simultaneously losing personal relationships and status they held prior to being ill at home, at work, and socially!  The folks around them don't know what to do exactly and necessarily, must go on with their lives.  They are often forced to deal with holes created by the affected person's illness:  child care, household chores, salary that is now diminished... not to mention help meet the basic needs of the cancer friend with doctor's appointments, self-care, and on and on. Hard stuff...all the way around.

While no one can make another person happy and illness is depressing - no two ways around it - the role of caregiver is probably the most difficult thing about cancer, yet the biggest gift EVER to those of us with it.  I absolutely KNOW that I would not be here today were it not for my B, my kids, my sweet sister Ruthie, dear friends and my crazy nurse peeps.  Would. Not. Be. Here.  So...if you ever think your role as caregiver is insurmountable, I don't blame you.  But, I can assure you, you are giving the best gift in the whole world to your cancer person.

Additionally, cancer peeps are stubborn.  Well...some of them are....

I actually came across this note just this week!  All I can say is:  A) I did give it to B.  B) He is a sentimental nut.  C) Some cancer peeps do not obey or take direction well.  {I don't happen to know any personally, but....}

All this to say, if you feel you need help with depression, feeling down, coping with all the shit that a cancer diagnosis throws at you - as a cancer patient or caregiver - seek help!!!  You caregivers out there....try to get your cancer friend to seek help if you think they are in need.  Call their provider if you think it is warranted.  Perhaps, your cancer friend will be more amenable to suggestion than the one B and my nurses had to deal with...

Everyone is different, but if you are at a loss as to what to do or say for your cancer friend, there are many good sites out there to give you suggestions:
How to be a friend to someone with cancer - The American Cancer Society
Supporting a friend who has cancer - Cancer net
Ten tips for supporting a friend with cancer - Sloan Kettering
What to say and do....and NOT!!...for a cancer FRIEND (not patient)! - from me!!!

A thumb's up, while on the potty pic, may not be the way to make YOUR cancer friend's day, but Tammy B knew it was a great way to make mine.  I have a collection!!!  They still make me smile - No. Matter. What.

I wish I could offer more, but here is a bouquet of beauty, love, and warm wishes to each of you.

Take care.  Seek help when you need it. - much love, les

Where I've been, where I'm going ~ Fractals!

I have always felt it is hard to know where I'm going if I disregard where I've been.  At the same time, I really dislike focusing on the past.  I find myself conflicted about all those 'remembrances' that show up on Facebook and other social media these days.  Yeah, it's kinda cool to see those old pics and remember those events, but if I spend all my time looking back on what I've already done....how will I have time to live my life today?  Even so, I do like to consider the past.  Why did THAT happen?  What role did I play in making things good?  Making them go badly?  Where exactly did this thing go off the rails?  How did I get it back on track?  Some things are unknowable.  But, I often learn important lessons that, hopefully, allow me to make a better garment, enjoy my travels in a different way, become a better person/partner/friend/mom.

So, today...I will take a moment ~

I tend to look at things in one of two ways...in the micro or the macro.  I am a firm believer in the "God of Small Things".  It is hard for me to suppose that anyone who adopts the adage, "Don't sweat the details!" ever made a decent garment, cooked a truly delectable dish, was a good diagnostician, or a very good friend.  Details are what transform a wearable shirt into one that is exquisite with a perfect fit.  The small additions of this spice (That would be fresh thyme, people!!!) or those extra moments taken to caramelize the onions, takes French onion soup from a good, basic, filling lunch ~ to an incredible, unctuous bowl of deliciousness.  Remembering the small moments you've shared with friends, the little random comments they made regarding their likes and dislikes, makes me a friend that I would like to have.  I don't always succeed in this, but I know I did well when my dear one exclaims, "I can't believe you knew I liked this!"  That one moment when getting the history of her baby's illness from a worried mom, a small detail in her report tells me, "Ah hah!!!" and goes on to make all the difference in my diagnosis and treatment.  I guess listening and paying attention figures largely in this business as well.

My faith in and passion for turtles (You can find more than you ever wanted to know about that here:  Turtles and me.) brings me to my macro view.  Driving to work the other day, I heard this fabulously well told and all around awesome story on NPR/Living on Earth about the preservation of Blanding Turtles in Massachusetts through the efforts of some really cool peeps and amazing school children.  Turtles and kids?  You can bet I'm in!!!  (Here's the link and it really is worth a listen if you have a minute:  Living on Earth: Blanding turtles in the Northeast.)  And for all that I loved every bit about the story, one part I keep thinking about is how long turtles have been on the planet.  Over 200 million years!!!!  Listening to any story about how humans have clearly gummed up the works for all the species on our planet...including our own!!!...worries me intensely.  I mean for Pete's sake!  The sex of turtles is determined by temperature!  (Yeah, I didn't know that until I heard the story.)  Too hot or too cold and we've got ALL Sallies or ALL Sams.  That ain't gonna work out!  But, knowing that turtles have survived, despite gigantic volcanic eruptions, ice ages, and horrifying world leaders (ones with strange mustaches and orange complexions come to mind) brings me down from my tree.  Not that it makes me sanguine about all this.  It makes me want to work harder!  Do better!  These turtles and our kids deserve it!!  But...the big picture...in life, in turtle survival, in melanoma, allows me to focus on the small things. I am certain my clinical trial saved my life.  But now, the approval of the drug I took, Nivolumab/Opdivo for folks like me, may finally...save the lives of many more.  (Yes, you know I was yelling about it.  Check it here:  About DAMN time!!! Opdivo approved as adjuvant for resected melanoma with lymph node involvement or metastatic disease!!!!)

There have been many times in my life when looking further than a day or two ahead was a huge challenge for me ~ Looking forward..... Pondering what my future holds is still a bit tricky.  I figure that's true for all of us. So, with a conscious review of where I've been and one slightly squinted eye, I am looking forward.  Forward to more silliness with Rosie as I attempt 40 more seconds of push-ups, ("You can do anything for 40 seconds," our least preferred instructor shouts!) and crap out entirely, lying prone on my mat giggling uncontrollably.  Forward to more hikes and meals and love and laughter with my Bentie.  Forward to more stories from Fredo, the best yarn spinner among us, and perhaps to writing a few of my own.  Forward to immersing myself in the smiles and even tears of my little critters, making the most of those moments and hopefully impacting them and their families in a positive way.  Being creative in my small garden patch, at my sewing machine, at my cook top...everywhere.

I certainly do not wish to fail to see the forest as I examine the beauty in a leaf, or the overarching theme in the mosaic by limiting myself to a single tile.  The fractals that compose my life and the world around me allow me to see the whole.  I know where I've been, let's see where I go...

Wishing a vibrant 2018 to each of you.  May your days and moments be filled with beauty in things large and small.  - love, les

Sew Chaotically!! - African Wax Print top for a beautiful friend!!!

I had so much fun with my first foray into the use of African Wax Prints!!!

Here's the whole story:  Sew Chaotically! - African Wax Print Butterfly dress!!!

My dear friend, Ashia, has always been hugely and sweetly supportive of my sewing efforts!  But you should have seen her face light up in admiration of this fabric in particular!!  Despite my wild abandon in cutting out the pieces of my dress with zero focus on conservation of fabric....thinking only of which swath of color I wanted to place where...and the fullness of the dress itself..... I STILL had loads of fabric left.  6 yards is a lot, y'all!!!  So, I took it into my head to make a top for her.  I had her loan me a simple sleeveless, tunic top that she liked and fit her well.  I started with a basic paper tracing of front and back, with a line for the bust dart.  I don't know what I was thinking...something along the lines of:  just cut that line and slip in extra space....but quickly discovered what those with a brain more spatially related than mine would have intuitively grasped!  That WON'T work!!!  So....it was onto the internet to learn how to do a full bust adjustment!!!  (If you have looked at this blog for half a minute, you KNOW that is something for which I have had no prior need!!!!)  If you ARE in need, these two links were really helpful:

Workroom Social: Full bust adjustment tutorial

Craftsy: Full bust adjustment

It seems pretty clear and straightforward...NOW....but it pinched my brain for a minute there!!!

And there she is!!!  The top and my beautiful friend!!!  Love you, Ashia!!! - les

April/May/June/July and August Reads!

April:  

Prodigal Summer - Barbara Kingsolver.  Strong women with personal quirks, environmental preservation, the fleeting nature of love and the unpredictability of ones future are classic Kingsolver themes told in her amazing voice.  Not Poisonwood Bible, but a worthy read with memorable characters.  

May:

Unsheltered - Barbara Kingsolver.  Loved this one!  Two stories running parallel about two women I could admire and identify with.  

The Marriage Portrait - Maggie O'Farrell.  Engaging story of Renaissance Italy in the 1550's and the story of Lucrezia du' Medici as interpreted by the author.  Keeps you thinking but not in the league of Hamnet to me.

Euphoria - Lily King.  The story of three anthropologists caught up in their work and each other in the 1930's as they study the South Pacific tribes of New Guinea.  Drawn to it because of my dear Jonathan and his early work.  But these characters were something else.  Hmmm...

The Thing about Jellyfish - Ali Benjamin.  When 12 year old Suzy losses her best friend in a drowning accident, she struggles to make sense of her last months with her friend and the reason for her death.  A story and character that really touches your soul - in the vein of A Bridge to Terabithia and others.  

The Secret Life of Bees - Sue Monk Kidd.  A re-read.  An affirmation of how women can support one another - no matter their race, position, or beliefs. 

June:

The Song of Achilles -  Madeline Miller.  Oh, Patroclus.  What a dear friend you were.  The story of Achilles and the siege of Troy, perhaps as it should always have been told.  Well done!

Circe - Madeline Miller.  I loved this one so much!!!  My heart ached for her, but I feel blessed to have known her.  Motherhood and true love were described as I have felt them to be.

July:

The Penelopiad - Margaret Atwood.  A re-read.  But, needed to review Atwood's version after the roles Penelope and Odysseus played in Circe!

Young Mungo - Douglas Stewart.  A hard tale to take.  But a vivid and unflinching portrait of life in the tenements, project, public housing, schemes - whatever your town calls it - and all that can be lost there.

August:!  

Interpreter of Maladies - Jhumpa Lahiri.  The hands down best collection of short stories I have read in some time - perhaps ever! The characters are real and complete with vivid compelling stories you remember long after their brief pages have been read.

The Namesake - Jhumpa Lahiri.  I didn't love it as much as I had hoped, given how much I thought of  Lahiri's short stories. Still, a good read with lots to think about.

Remarkably Bright Creatures - Shelby Van Pelt.  Really liked this one, which surprised me given that one of the main characters (and one of my three favs) is an octopus. 

Read and live chaotically!!! - les

Sew Chaotically! ~ Romero Trousers - With so much love and thanks to Mary Anne...

Today is Melanoma Monday.  So dubbed to kick off the Melanoma Awareness Month of May.  Wearing orange to represent!  The top is the Kalle Shirt from Closet Case Patterns, made last summer.  A make I have really enjoyed.  But the bottoms and the love that went into them is the real story today.

They are the Romero Trousers, pattern from Pauline Alice.  I first made shorts from the pattern for Roo last summer:

 

Both versions are size 40, made with no changes other than using a self-drafted contoured waistband and 1/2 inch pinched out at centerback.  The pattern is very well drafted and a lot of fun to make. Here are the deets from making her a previous pair:   Roo's Purple Romeros

But, the two Romeros made for Roo are NOT where these pants started!  They started with a dear friend and her love, her willingness to put forth no small effort in the midst of her busy life as a nurse, homemaker, mother to three active boys, daughter, friend to many, wife to a busy pastor and therefore his church - And that's just the tip of her iceberg! - for me.  On seeing this somewhat whiny post of mine, back in September 2018 as I worked to rediscover my strength and place in the world as I recovered from my second cancer diagnosis and two abdominal surgeries:  Tales from REHAB - Part 1!, inspired by the lovely Lliria dress, by Pauline Alice  I pictured in that post, Mary Anne went out of her way to encourage me to carry on and make me smile - with hope.  Sending this:

From the minute I got that card and those amazing buttons, I knew that they would become my Mary Ann Romero Trousers.  Thank you my dear friend.  It has taken a minute for me to get it together.  The gift you gave has been more sustaining through those minutes than you know.  I now have a suit of armor, fastened with bright red love and strength, that protects me and makes me smile with every wear.

And that Lliria dress?  I have the fabric.  Had to get some slightly smaller buttons.  But, I think you will approve.  Can't wait to show you my Mary Anne Lliria!!!  We cannot all be the amazing woman you are.  But, you have shown me the incredible power that reaching out to those in need has to transform and inspire.

I have been blessed with more kindnesses from my dear peeps than I deserve.  I am ever so grateful to each of you.  Thanks for a gift so much greater than buttons, my dear Mary Anne! ~ love, les

RIP my dear Dr. Jeff Weber

I have not been able to find the words to describe the best physician who has ever provided me with care, the brilliant mind that I had the privilege to observe, the deep kindness rooted in his every response, his optimistic yet forever realistic approach, his busy body love of life, his enthusiasm for good food, his demand for precision, his incredible humor, his ability to do a complete physical and history (no dry labbing here!!!) within minutes, his humor, his smile, and yes - my friend - Jeff Weber.

So, it is probably best to let those who knew him well - do so here...

Omid Hamid MD

@OmidHamidMD

Jeff Weber's career was not only filled with patient advocacy, leadership and achievement but punctuated by mentorship. I urge all fellows and junior faculty to find someone like Jeff – great friend, amazing mentor, brother, leader.  Jeff was on a trial call this Thursday at 7 am running through patients, and plans.  He worked on Friday. Always leading by being the example.  Always communicated in the future tense.  Precise to a point, expert.  Dry wit.  When I was a resident on his service, you could wear scrubs but had to show up to rounds in a shirt and tie.  Respect.  As his fellow I raced to Norris to round on the IL2 patients before his 545 phone call. Tactical.  As his apprentice he insisted on 6 am education on Immunology, trials, life.  So grateful for his guidance, mentorship, friendship. Irreplaceable. May his memory be a blessing. I’m sure he’d ask us not to make such a fuss.

BMJ Editorial - Jeffrey SWeber, MD, PhD (1952–2024): in memoriam to discovery, friendship and family

Memoriam from AIM at Melanoma

Without having met Dr. Weber in 2010, I know I would not be here today.  Further, without having gotten to know Jeff over those years, to sharing a meal with him and conversation in his home with his beloved Linda in 2020, I would have missed out on personally being touched by a human comet. 

Thanks for all you did for me and so many others, Dr. Weber.  Thanks, for being my friend, Jeff.

May Linda and your daughters forever feel the warmth of your love, and memories enjoy the mischievous twinkle in your eyes with the slightly crooked smile that meant adventure was brewing.

Some losses are hard, but life is still blessed by the knowing. - les

Beautiful words, from an amazing melanoma warrior, and friend~

This is part of a post made by a dear friend of mine on the MIF forum.  If he can preserve such an inspirational attitude and appreciation for all that is good, after all that he has endured....there is absolutely NO excuse for the rest of us.  With his blessing.....

[Regarding] Pati's husband sorrowful post - very powerful and sad. She was so compassionate and smart, a real fighter and alive human being.

This fight to find good treatments for advanced melanoma is extremely frustrating, often unfair, filled with blind alleys, and at the same time more hopeful than it's ever been. We can be driven into making choices we never thought we'd consider out of a lack of reasonable alternatives. It feels terrible to have one's oncologist say, "I'm sorry but I have nothing more to offer you." And we can wish for pharmas, the FDA, etc. to make decisions on promising drug development more rapidly (and compassionately), but in many cases that's simply not how things work - often very depressing.

We have a lot of fallen warriors, a lot of wonderful and very real souls who have not made it, but there are increasing numbers who are, for whatever reasons, coping and making this more of a chronic disease state. So in spite of it all, there really is hope now.

Take good care, and make your days special,

Jonathan

Your words did much to ease my heart, my friend.  Pati would be proud.  Hugs - c

Running...thoughts. Alive? Dead?

Running today I found that I was thankful.  Thankful to be running well and easy after having a cold that flared up my asthma for the past couple of weeks.  Thankful that my sweet love was also my very best friend.  That my children are people I admire.  That my daughter and I could agree to disagree about Mrs. Dalloway, "Mrs. Dalloway said she would buy the flowers herself." That she would happily entertain my notions and have such conversations with me.  That I have the very BEST PEN PAL EVER (thanks Jonathan!).  And then....as I ran on, my thoughts turned to menus.  Tuna and soba noodles with sesame seeds, green onion and zucchini tonight.  Pork loin, dressing, green bean casserole, maybe brussies for Bentie, and gooey chocolate cake with rum soaked cherries on the side for Thanksgiving.  A blackberry syrup I need to make for the morning after's bread pudding.  Oh...and I need pumpkin for the pies.  Then, planning the sandwiches and scones with berries and cream for a perfectly British high tea in early December for a very special grad to be!!!!

But, last week, while jogging in a similarly foggy, misty, moisty late fall day here on the mountain, I was contemplating the silhouettes of the mostly bare trees.  A few were still hanging on to their brown and crumpled leaves, but most raised empty branches skyward.  With mild curiosity, I looked over at a neighbor's yard to see if the long dead tree he seems to be taking bets on as to whether it will land on his garage or the power line was still standing.  Yep.  Still there.  But now....it looked no different from its mates.  If you hadn't watched its demise over the past seasons, you would have to look very carefully to see that it is not as viable as its fellow forest friends.  And that made me think.  Do I live like I'm alive?  Or dead?  What do my choices and actions show?  Cause, spoiler alert!!!!  We will all join my now hidden friend sooner than we can imagine.  I won't have a choice about that.  But, I do have a choice about today.  When my leaves are intact, and even when they aren't....am I making the most of being alive?  I've watched some choose to live their life as though dead already, allowing opportunities for joy and love and friendship to wither and dry on their branches.  I don't want to "live" like that.  I don't want to be part of the walking dead, hiding among the living.  I know that everyday may not be filled with joy and delirious happiness...but I certainly want it to be filled with life!!!  Even if slightly random, bizarrely beautiful, and chaotic!  To yours - c

Chaotically Wonderful Words ~ Anais Nin

 

"Each friend represents a world in us, a world possibly not born until they arrive, and it is only by this meeting that a new world is born."

I strive to be the same real person in my interactions with everyone.  And I think I do.  And I think that is good.  Still, I think it is also true that a friendship really does become a world of its own, where you become more of yourself and create a special combined entity with your friend that can never be completely shared with anyone else.  

I remain ever grateful to all of you - far and near - who have melded their world with mine.

                                                                                   ~ les

Across Eight Aprils! Can you believe it????

Eight years ago today, I was in surgery having the right upper lobe of my lung removed three days after having radiation to my brain.  Such a crazy time.  Such a juxtaposition between what nature had wrought within me and the beauty she shares so abundantly every April here on the mountain.  When you pair that with my love for, Across Five Aprils, the story of a family during the American Civil War, so beautifully written by Irene Hunt, I find April particularly poignant and lovely.

My Aprils....

2017 ~ Across Seven Aprils
2016 ~ Spring Fling - Across Six Aprils
2015 ~ Across Five Aprils
2014 ~ Across Four Aprils....A melanoma perspective...
2013 ~ This year I didn't follow my usual look back...but wrote this instead:  UBUNTU - (oo-bun-too). I am, because we are.
2012 ~ Across Two Aprils
2011 ~ I fear I was too deep in the soup of my trial to look about me as much as I might have.  But on April 1, there was this:  A poem of comfort and sound advice for you... While on April 24, I reported on my most recent trip to Tampa:  More pie....well 3/4's at least!!!!
2010 ~ On this day, 8 years ago, there were these posts from my sweet girl:
Today is...a big day
Update on the surgery:
The Worst Part is Over
While on April 27, 2010, after application of my halo (Probably the only one I'll ever wear!!  HA!) while awaiting SRS...I wrote:  Brain Squeezers  Later that evening, there was this:  Home Again
I still like the essay written just before starting this blog:  Life

Yesterday, April did herself proud!  We had BIRD day!!!

I reveled in being present, listening to their busy twitter as I made a small rock wall around a flower bed, moved irises to new beds (I know!!!  I should have done that in the fall...but, it will all work out!!!), dug up some plants to share with a friend who has a new home, moved a few bluets from one creek to another, returned errant mint to its proper bed, and generally had a grand time playing in the dirt while enjoying nature's beauty.

We rounded out our evening at a vigil, sponsored by Chattanooga Students Leading Change who have been amazing in organizing rallies and our local  March for Our Lives, in honor of those who lost their lives to gun violence at a Waffle House in Nashville.

So, for just a moment ~ today ~ I look back.  I look back with great thanks and appreciation for those who cared for me and mine on that day 8 years ago and ever so many days since.  I look back on the beauty of yesterday and all the other Aprils I have been so generously blessed to enjoy. 

Most days, I look forward.  Today, I took care of my kiddos.  Helped a friend plant special flowers in her yard to commemorate a time of beauty and the pain of loss.  Each day I seek to contribute my bit, to strangers and dear ones alike, such that my presence on this spinning ball may be in some small way of value, if only for our brief moment.  But most of all, on days like today, I look to my heart...my ME...my reason...my love ~ B.  You have made, and continue to make, my Aprils possible.  With much love to you all ~ les