Happy New Year!! It's March Forth!!!

I'm weird.  I know it. But, I make complete and total sense...to me!!! My favorite day is here. MARCH FORTH!!  I am so incredibly blessed to be here to celebrate it....again.
Here's a review:

2011: 3/4/11 - March Forth!!!!

2012: anti PD1 update from Moffitt

2013: March Forth...again!!!!!

2014: My favorite day ~ March Forth...with a special pic/vid for J& F!!!!

2015: Long term melanoma survivors....MARCH FORTH!!!!!

2016: Endobronchial Melanoma "Little is known...." Hear ye, hear ye....MARCH FORTH!!!!!

Spring always seems the best time to celebrate and glory in the New Year. And while I have recently lost dear melanoma peeps, felt inadequate to remedy the hurt and pain of too many of my little charges at work, looked around and had the sinking feeling that the world and its leaders have gone completely mad - the beauty of nature, and love of family and friends surrounds me still.

In appreciation of all the gifts I have been given, I send warm sunshine, delicate blooms, and the intrepid spirit that Mother Nature gives and instills in all her living things...to each of you.
March Forth!  love, les

March FORTH ~ no matter the tempest that surrounds you...

We are here.  Together.  On my favorite day.  Lucky to be able to live and love and continue to March FORTH!!!  (Here's a retrospective/explanation with links and beauty within!)

Despite the ugly all too easily found in the world - across the globe and across the hall - we will MARCH FORTH!!!  Despite the hurt and injustices that dear ones experience all to often - we will MARCH FORTH!!!!  Despite the struggles with ill health, poor treatment, and lack of access that far too many experience - we will MARCH FORTH!!!  TODAY on this most hopeful of days, and all the others in between - WE WILL MARCH FORTH!!!!!!!!!!!!!!!

Marching through life is not easy.  Life doesn't roll that way.  But, no matter the tempest in your teapot, you are loved.  You are worthy.  You can - MARCH FORTH!!!  Knowing all the while, you will never March Forth alone.  ~ love, les

March Forth ~ My FAVORITE day!!

March Forth.  The day hope springs eternal.  The day mother nature shows us the beauty that life really is ~ and is yet to become. 

All in all, a day of hope and promise and love for you and yours!!!

Yes, I am strange.  And yes, I've thought that MARCH FORTH should be the REAL meaning of this day on the calendar since I was a child.  If this solitary day left you inspired, but wanting even more, this really is YOUR day!!!  Here is a March Forth retrospective, just for you!

I live chaotically.   You may live any way you like!  Just LIVE!!!!! - love, les

March Forth...again!!!!!

My favorite day.  March forth into spring. May it bring happy opportunities and much joy.  Thinking of you on your scan day tomorrow, Jonathan!!!  March forth!!!! - c

My favorite day ~ March FORTH!

With political nastiness enraging us, viral mutations endangering us, robo calls that torture us, cancer continuing to hurt so many of us - amid aggravations large and small - it can be hard to remain strong, much less positive.  Still, on this day of days, a day that has always read a little differently for me, there is much that can inspire us to MARCH FORTH!

What I can do — I will —
Though it be little as a Daffodil —
That I cannot — must be ~ Unknown to possibility
                                                             ~ Emily Dickinson

From my yard to yours, no matter your struggles, there is beauty still.  March Forth! ~ les

3/4/11 - March Forth!!!!

My favorite date on the entire calendar!!! What other date could be so enthusiastic and optimistic?

Started my day with 15 minutes on the elliptical for 318 calories burned. Not exactly beast worthy (that would require 333!), but pretty good as a beast in training.....again! :>( Oh well, marching forth nevertheless!

Then, we got to have a fun trip to Atlanta to meet Rosie after she got out of class. She took us to one of her favorite new finds in Atlanta...H Mart....an Asian market with amazing fruits and veggies...including many I know not what to do with....and every type of meat and fish! It was like a trip back to China town in San Francisco! We got to have a delicious lunch of Benito boxes and noodle bowls....It was GREAT! Rosie looked fabulous as ever...seems to be getting things under control after the wild rush her semester has been this time what with starting 4 days behind due to the crazy Atlanta ice storm. She's a trooper and makes us so proud!

Talked to Fred-o by phone today. He's churning out one paper after another! Looking forward to getting to spend time with him on his spring break in one week and then with Rosie in two weeks. Wish they could have fallen together, but we will have a weekend to share where they overlap!

Busy times coming up. Off with Brent this weekend. Then to work Mon-Wed. He and I will fly out of Atlanta Thurs to land in St Pete. We will have Thurs to putter about and end up in our hotel with a kitchen on the beach in Tampa. Friday will be the final treatment of this session, which is usually done by 1pm or so...then we can laze about that afternoon and all day Sat. We fly back to Chattanooga on Sunday am and get to see Fred-o. Monday is a day of scans. Kik may come for a visit on Tues. But I'll get to do around with Fred. Thurs, Brent and I are off again, leaving for Tampa around 5pm out of Atlanta, because Brent is going to work that morning. Friday will be a meeting with Weber and leukophoresis. But that evening, we will be picking up the Roo in Atlanta for her spring break as we head home for a weekend with both the binga-heads!!!!

So....a busy couple of weeks ahead.....MARCH FORTH! c

My favorite day ~ March Forth...with a special pic/vid for J& F!!!!

My sweet love, said, "Come on!  You have to come outside for a minute!!  Come on!"  And there it was, the first crocus of Spring.  Yes, Spring...shall come!!!  Again!  So, March Forth!  With spirit and determination and beauty and love.  All for you today, J!  All for you!!!!

Scroll down just a bit on the link below.  Forget all the shadow business.  You and F are the peeps who show me the way, teach me who I want to be.....and no!...you have never gone unnoticed...not by me!  Did you ever know that you are my hero?  I could fly higher than eagle because the two of you are the wind beneath my wings.

Wind Beneath My Wings

Thanks for being you....to J & F!  Forever. - c

Endobronchial Melanoma "Little is known...." Hear ye, hear ye....MARCH FORTH!!!!!

Endobronchial Metastases from Melanoma:  A survival analysis.  Chaussende, Hermant, Tazi-Mezlek, et al. Clin Respir J. 2016 Jan 20.

Metastatic spread to the tracheobronchial tree from other than bronchopulmonary tumors is a common clinical problem. However, malignant melanomas, a highly metastatic potential tumor, is rarely metastasing in the airways. Therefore little is known about survival of patients with endobronchial metastasis from melanoma. The aim of our study was to assess survival of patients with endobronchial metastasis of melanomas according to clinical and radiological features, to determine any possible factor affecting survival. This retrospective study included 19 patients who underwent a bronchoscopy from 11 different hospitals. Data about patients' demographics, symptoms, radiographic, endoscopic findings and treatment were investigated to evaluate any possible impact on survival. Endobronchial metastases occurred at a median of 48 months (range 0-120) following the diagnosis of the primary tumor. 73.7% of patients had other proven metastases when the endobronchial involvement was diagnosed. Symptoms are not specific as well as radiological features. Median overall survival of the studied population was 6 months (range 1-46). Factors of poor survival were multiple metastatic sites, pleural and soft tissue metastasis. Different treatment modalities applied in our patients showed no effect on survival. Patients with endobronchial metastasis have overall poor survival, affected by multiple organ involvement, the presence of pleural and soft tissue disease, while no impact on survival has been shown by any treatment applied. Oh, yeah.  Melanoma CAN look like that!!!!  Matter of fact...it did for me:  Got melanoma? Get yourself a melanoma specialist!!!  And even then, your melanoma specialist may not know what you are dealing with.  But, peeps!!!!  I'm still here!  Granted my endobronchial melanoma was more my presentation (albeit 7 and 3 years respectively after two cutaneous primaries!) rather than after melanoma had invaded many organs.  I feel pretty sure, given its small size, that my brain met was an off shoot from my lung mess...rather than the other way around....but, that additional met was present at diagnosis.  And YES!!!!!  You have one rattie, dear researcher peeps, for whom treatment has had an impact on survival!!!!  If heaven forbid this happens to you.....get the best care you can.  Don't listen to answers that make no sense.  Consider treatment even IF you have only "6 months to live"!!!!  I'm still here after a lobectomy of my right upper lung followed by 2 1/2 years of anti-PD1 and my 2010 endobronchial met!!! Hang in there ratties!  We are showing the way...bit by bit...day by day!  And on my favorite day of all days....MARCH FORTH!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!  Love, c

March Forth - for Ukraine

It is with a heavy heart, palpable sadness, and worries that are utterly insignificant to everything the people of Ukraine are experiencing as they are so cruelly attacked by Putin's army, that I dedicate my favorite day - to them.

Today I share the blues and yellows of my world in their honor ~

My dear fellow citizens of this world, dear people of Ukraine, you have demonstrated strength and courage that is awe inspiring.  A spirit that remains a shining light despite the atrocities that you have been dealt and continue to face.  I'm sure it is impossible to feel, but ever so many of us are holding you in our hearts and working to find more tangible ways to give you aid.

Remain strong as you can.  Sending you love and my best hope as I celebrate your beautiful blue and yellow.  March Forth.  ~ les 

Long term melanoma survivors....MARCH FORTH!!!!!

It is strangely disconcerting to consider that you may LIVE after being flat out told you weren't going to...or at least no longer than a few months!  I was informed of that very thing several times.  B and I were just remembering what the oncology radiologist who provided SRS to my brain met said at my last appointment with him...  He would - "see [me] back in a few months and 'we' would do whole brain radiation then!"  On leaving, I told B that unbeknownst to that fat little turd, it REALLY was my discharge appointment.  I would NOT be back to see HIM!!!!  He was a jerk who clearly had no knowledge about how he SHOULD be treating patients ethically nor any comprehension of appropriate radiation care for melanoma!  You most certainly can, and should, use SRS multiple times if necessary before jumping to whole brain radiation in melanoma!!!  But, I digress...I hold no animosity to other docs who gave me the same limited life expectancy.  They were telling me the data that was the REALITY of the time!  There was no ipi, anti-PD1, BRAFi!!!  Options were few and far between and 6 months or so was EXACTLY the planet time most folks like me had to look forward to....then. When you add to that rather scaring experience the fact that melanoma doesn't play like other cancers....it can be hard for patients who are doing well, to go back to "normal" indeed!

Depression, Anxiety and Quality of Life in Long-Term Survivors of Malignant Melanoma:  A Register-Based Cohort Study. Beutel, Fishchbeck, Binder, et al.  PLoS One.  2015, January.

Via a state cancer registry in Germany a cohort of survivors of malignant melanoma were contacted.  Of 1302 contactable patients, 689 completed a questionnaire that addressed anxiety, depression, and quality of life.  Results were statistically analyzed and compared to surveys from the general adult population.  

At an average of 8.4 years (5.7-12.2) after diagnosis distress was higher in women than in men.  There was a decline of functioning and increase of symptoms across the age range of both genders.  Compared to the general population there was slightly increased depression in the female melanoma survivors, but no impaired quality of life.  "Yet, survivors evidenced functional decline and more physical symptoms. Distress and reduced quality of life were consistently predicted by lack of social support, fear of recurrence, pessimism and self-blame."  

"Overall, long-term survivors have adjusted well achieving a global quality of life comparable to the general population.  Yet, compromised functional dimensions, physical symptoms and distress indicate the need for integrating psycho-oncological screening into oncological follow-up..."

Not sure what to make of all that.  Women are wimpier than men?  Maybe....or perhaps they are more willing to admit their fears on paper?  Are cancer patients routinely offered psychological support?  I have never been.  And if I had, I doubt it would have been covered by my insurance.  It was certainly not offered as part of my clinical trial.

Sometimes I do think folks who have been through what I have also shared are incredibly focused on this pain or that sensation.  "Could it be melanoma again?"  "My treatments have made me forgetful!"  "Ever since I had ____________ I just can't work!"  Then again, I have known the healthiest of folks to be absolutely certain they have this dread disease or the other because they had a headache, a simple procedure, or a hang nail.  I wonder, "Do I do this?  Do I over analyze each sensation or event?  OR...Do I refuse to address the things I should?"

It is hard to know what is in the heart of a man...or sometimes even your own.  I figure we all must do the best we can.  I don't think I ignore or am unduly focused on my personal state.  But, I may not be the best judge.  Finding balance is not easy for anyone.  I hope that I simply embrace all the moments I can, today and always!!!  So....MARCH FORTH....on this, my favorite day!!!  Love, c

March-ing FORTH!

While many recent days have been painfully cold and rainy at our City Bus Barn or under a tent down by the river where we have been vaccinating around 700 to 1,000 peeps daily depending on the site, today was fairly warm and really lovely!  No matter the weather, I am glad working on my local vaccination team is something I can help with.  And in the spirit of my favorite day - this was in my snack bag today - 

Bentie knows my heart!!  Once home, these beauties brought a smile ~

Wishing a day of good thoughts and beauty for each of you.  With much love and hope, MARCH FORTH!!! - les

Hope springs eternal...

Well, maybe it does and maybe it doesn't.  I tend to see eternally optimistic and hopeful people and others who couldn't carry a basket of hope if you cling wrapped it and tied it to them.  As usual, this quote doesn't mean the obvious to me (if you remember: March 4th = March forth....in my head).  Rather, it means...spring is the hope....that is eternal.  And so it is....through all the drear rain and cold...the crocus and the daffodils are peaking their heads out on the mountain.  New growth is evident on the forsythia, irises and hyacinths.  Of course, Brent has always referred to them as the "stupid flowers".  But, I like them. They are brave. They are optimistic.  They see spring on the horizon long before the rest of us.  Hope springs eternal.....or at least, spring does.

And, before I lay me down to sleep, I think of Steven's scans to keep, free and clear, and without an image, no thing to watch, no single blemish....No! Worry free...is what I hope, his scans will be.

Hopefully yours - c

anti PD1 update from Moffitt

Our trip to Moffitt went well...more on that later.  Here is the best data I was able to glean from the coordinator and NP I saw on this visit. (Weber was out of town.)

According to their reports...all the patients in the resected 1mg, 3mg, and 10 mg/kg groups of this trial continue to do well with the exceptions of the patients who had to drop off early on that I have already talked about.  One patient that I've mentioned before CONTINUES to show improvement/regression of the tumors that initially progressed, despite, STILL, having been given no other treatment.  Apparently, this has fostered discussions of whether or not the maintenance doses that I and others are taking at this point are even needed.  At any rate, I am very pleased for that person and what that says about the potential of MDX-1106.  On  a slightly more worrisome note, some of the patients in the 3mg/kg group are dealing with more side effects than have been experienced in my cohort.  I've already mentioned one patient that had swelling of the optic nerve with subsequent vision impairment that was, I'm told, relieved by steroids.  Additionally, there have been 2 patients with colitis (1 currently in hospital) and 2 episodes of pneumonitis. The 10mg/kg group has only two patients who have begun dosing (one is only 2 treatments in) though we were assured that the cohort is now full, lacking at most, only one unfilled spot, though our sources suspected that it was filled as well. So...as yet it is unclear what, if any, side effects those folks may experience at the increased dose.  On a positive note, if this works like ipi....the patients given 10mg/kg did much better as far as tumor burden and regression than the patients with 3mg...but did experience greater side effects.

A slightly narcissistic thought/question....  I had a really pretty bad "asthma" flare around Christmas, after my last infusion on December 9.  Also some of my scans have shown white patchy stuff in my lungs, that we have attributed to my asthma.  Sort of makes me wonder if it was really a very mild pneumonitis all along.  We'll pay more attention to what my lungs do in the next couple of weeks to see if there is a pattern there.

Given some of the questions that have been posted re: results for patients on the Cure Tech version of anti-PD1 we asked about those patients as well.  We learned:  100 patients were placed on the trial nationally.  Moffitt acquired 4 slots.  Currently 1 slot remains open because the patient that was to take it failed the lymphocyte criteria.  Nationally, we were told, that the Cure Tech trial is "closed", "since the slots are filled".  Nationally, the best response so far is only "stable disease....with some who have progressed".  "There have been no patients with regression."  At Moffitt, there has been stable disease in their 3 patients.




Overall, we were told that "it appears that anti-PD1 holds a great deal of promise" since patients like me (ie stage IV...and we all know...there is no stage V!!!!!!) are still alive and kicking at this point.

MARCH FORTH....there is hope.  3/4/12 - C

LIVING ironically ~ post cancer and during COVID-19 ~ Welcome to the world, baby girl?????

Isn't it ironic???!!  Having been in personal isolation for the past year and a half due to my surgeries in 2018 for adenocarcinoma ex-goblet cell of the appendix and subsequent chemotherapy - I was very much looking forward to rejoining the world this spring!!!  I had fun working on Roo's spring wardrobe.  I cleaned ALL my closets and cupboards.  Scrubbed the baseboards, refrigerator, every tray and drawer in the kitchen.  Oiled and cleaned under, beside and behind the furniture.   Spring cleaning done early!!!  I was ret tah go!  Enter COVID-19 necessitated social isolation!!!

To explain ~ My second episode of malignant cancer and its treatment proved incredibly difficult to rebound from - physically and mentally.  Not news to any cancer patient, but old school chemotherapy is a bitch!  I continue to live with significant neuropathies especially to hands and feet (a burning pain mixed with strange numbness and weird jingy jangy sensations) along with a variety of skin afflictions and joint pain that are improving.  Sadly, these side effects are incredibly common with chemo.  Every patient forum for cancer treated in this manner, has a zillion posts from folks dealing with similar side effects, all searching for help and answers.  Too often, oncologists provide no particularly valuable warnings of what is coming nor advice on how to deal with these issues once present.  Even worse, there is often an undertone of, "You had cancer.  You're still here.  Are you not grateful?"  You may be sent to rheumatologists or dermatologists. (I declined.) Still - no real solutions are provided.  X-rays and scans of joints are usually negative. Patients are often told that "nothing is wrong".  Skin weirdnesses are very common.  Soon after starting chemo I developed thick waxy yellow plaques to my face, arms and hands, improving some once off chemo.  Since then my skin in those areas has peeled repeatedly.  My joints - and bones generally - hurt everywhere, all the time, during chemo.  With chemo completed, the generalized pain improved, but my joints continued to ache.  What's a girl to do?  I started short workouts on the elliptical.  I took walks.  I began to run.  It hurt.  But, today the joint pain is better.  I started using some OTC retinol products to the plaques on my hands and face, based on some research B found.  They improved gradually.  Apropos of nothing, my face will still randomly peel, but the plaques have resolved.  Neuropathies remain pretty much unchanged, waking me some nights, not on others.  It is what it is.

Mentally, it has been a struggle.  It was hard to accept the need for help from others.  Hard to be the cause of worry - again!  Hard to lose the "future" I had drafted for myself.  Hard to make garments - something I had been excited about - for a body so radically changed.  A body that may not need said garments period.  Besides, a body not going out and about can't justify the production of new clothing, can it?  Self worth is hard to find when you don't seem to be doing anything productive!  But gradually, through the love and encouragement of my dear ones, the beauty of books and nature, the resilience of the human spirit - I began to MARCH FORTH!

Over the past few months, I have taken baby steps to rejoin my world.  Roo's wedding.  Visiting friends engaged in their own struggles.  Sewing projects for myself and others.  A bit of travel with B.  Finally feeling free to play!  I even got a job!!!  YEP! Sho did!  As a Census Worker, to begin later this summer, a useful and interesting way to start being a productive human once again.

Which brings me back to IRONY and COVID-19! Just as I attained the strength to end my personal sequester, our globe has been attacked by nasty strands of RNA using human cells to replicate and grow.  Like cancer, COVID-19 is not impressed with how much money you have, the color of your skin, the state or country in which you live.  Neither cancer nor viruses value maps.  They are not deterred by walls or lines drawn in the sand.  It is immaterial to them who you vote for - or against.  They don't care if you are young or old.  However, the data for this particular virus tells us that the older and immune-compromised among us are at greater risk for significant illness.  THIS DOES NOT MEAN THAT YOUNGER FOLKS WON'T GET INFECTED!!!!  It just means they are somewhat less likely to be at risk for hospitalization and death.  Given the numbers expected to be infected in the US (and across the globe) and the data already demonstrated regarding the proportion who will require hospital care - it is clear that if the outbreak is allowed to occur all at once, the capacity of our healthcare system to provide care to all who need it - both the suffers of COVID-19 and those with heart attacks, strokes, appendicitis, trauma and all the other expected illnesses those systems address daily - would be overwhelmed!  Therefore, it is obligatory for all of us to do our part to slow the spread of this virus as much as possible in order to ensure the availability of healthcare resources for those who need them.  Apart from needed testing, the common sense action we can all provide to stem the tide, is social distancing.  It is just that simple.

As disappointing, frightening and strange as this new reality is - WE CAN DO THIS!!!  Last Friday, Roo was told - starting Monday you will teach online - from home.  Okie dokie then.  A bit of brain storming with fellow teachers and she is up and running.  Work and assignments posted on line.  Videos of instruction produced at home.  Check her utube channel Moore Math with Mittens if you want to beef up your geometry and algebra 2 skillz!!!! I am so incredibly proud of her and teachers across the globe who are stepping up to meet the needs of their students on incredibly short notice with lots of love and creativity!!  Sadly, for many children in this country, their school lunch is the only significant meal they have.  At Roo's school her principals (already amazing multi-taskers and certified bus drivers) are traveling the bus route, taking lunches to students along with delivering and picking up printed school work to students without internet access while simultaneously working to get those kiddos online! She and ever so many other teachers have stepped up to this unprecedented challenge, keeping our nation learning and our kids busy and comforted by caring faces - even if they are only "virtual"!!

You parents are awesome, too!   Granted, it is more than you ever asked for, but I know you are are doing a great job for your kids and the rest of us really do appreciate you for it!!!  Still, responses to this new arrangement posted by some of my friends with kids at home have made me laugh out loud:

There are all the unsung heroes of our everyday now juggling even greater burdens - the delivery workers (from mail, to food, to products), checkout clerks, grocery employees of all stripes, pharmacy staff, all our healthcare personnel - from housekeeping to radiology to respiratory therapy to nurses to doctors and everyone in between ~ blessings, gratitude and strength to you all.

Then, there's this guy!  Petrified of bringing crud home to me - given the history shared above, having had asthma from childhood, donating half of my right lung to melanoma and wheezing my way through 2 1/2 years of immunotherapy in that ta dah - this is the crazy get-up that B donned to make a run to Wally World yesterday!  He didn't really think his attire was going be completely protective against the corona virus, but did report being the recipient of a lot of side eye and folks definitely gave the #crazperson a wide berth - which was exactly what he wanted.  That pic cracks me up every time I see it!!!

Yes, things feel out of control.  Plans made even days ago - from the mundane to the adventurous - are turned on their head.  Loved ones may suffer.  Elderly in nursing homes are most certainly confused with new routines and the absence of expected visitors.  Children are at loose ends.  Parents are burdened further.  The global economy and incomes of friends and family will certainly be affected.  Jerks - IN MY HOMETOWN!!!! - try to benefit from the desperation of others:  He has 17,700 bottles of hand sanitizer and no where to sell them  WHAT AN A$$HOLE!!!!!!!!!!  But, despite disease, difficulties and despicables - the world is filled with beauty still.  A young family in my neighborhood volunteered to make grocery runs for those who are unable to do so for themselves.  Brent and I are searching for ways to put our skills and training to use. Yes, personal dreams and plans have been for the moment dashed. But, if ever there was a time when society was blessed with the technology to allow physical distancing WITHOUT social isolation, it is now.  As we cancer survivors have already learned, when shit hits the fan, that which is most important in life comes to the surface very quickly and the rest - didn't really matter after all.

Stay safe.  Take care of yourself.  Take care of each other.  Alone we are little more than ripples in the sea of life.  But together, we can do great things.   Love, les

LIVING with cancer. The need for psycho-social services. Pati continues to lead the way

B came upon this abstract today.  It touches on something elemental...the psychosocial aspects of a cancer diagnosis.  Having 'cancer' affects the patient, the family, everything.  We are not who we once were.  But, in the midst of trying to survive our cancer (with the simultaneous need to learn a completely new, and often foreign, cancer language - fit in doctor appointments, surgeries, radiation, oncologic therapies, manage pain and fatigue, not to mention bills and family obligations) - LIVING with cancer is a topic that is almost never addressed, while patients and their families try to soldier on with little to no psychological support or effort by institutions or medical providers to teach needed skills and coping mechanisms for the new cancer reality in which we now live.

A very dear one of mine has written:

Psycho-Oncology: A Patient's View. Garcia-Prieto P. Recent Results Cancer Res. 2018;210:57-66. doi: 10.1007/978-3-319-64310-6_4.  

Culturally the most important, valued, and less stigmatized part of cancer care is the medical part: The surgeon cutting the tumors out and the oncologist leading the strategic decision-making of the medical treatments available. The least valued and stigmatized part of cancer remains the psychosocial care. This chapter describes-through the eyes of an academic, psychologist, stage IV melanoma patient, and patient advocate-how one patient navigated changing psycho-oncological needs from early stage-to-stage IV through a whole range of psychological interventions available. Her voice joins that of all cancer patients around the world whom are urgently calling for psycho-oncological care to be fully recognized as a central part of cancer treatment.

I have tried to address this need, this world ~ many times:
2011:  Chemo Limo
2012:  My Life with Cancer
2014:  Tears and melanoma...they're not always sad...
2015:  Long term melanoma survivors....MARCH FORTH!!!!!
2015:  What to say and do....and NOT!!...for a cancer FRIEND (not patient)!
2015:  Health Monitor Magazine interview
2016:  Don't give up. Don't ever give up.
April 2017:  The Mental Price of Melanoma
June 2017:  ASCO 2017: Friends in need are friends indeed! Here's to the caregivers!!!

Yes, LIVING with cancer is not for sissies.  Luckily, we have had many advocates and dear cancer friends who, as beacons of light, have helped guide our way...even if current medical systems across the globe fail to address psychosocial needs as best they might.  Not the least of these amazing peeps is the author of the article highlighted above ~  Patricia Garcia-Prieto.

If you do not have time or interest in perusing my links above...I understand completely!!!  But, please!  Do have a peek at this one.... My Ode to Pati....a fallen comrade  especially her video, What's one life worth? [linked within].

You remain in my heart, Pati.  You continue to lead the way.  I hope your husband and sons are doing well.  love, les

Winter games...

As always in life, regardless of season, this winter brought births and losses.  Beautiful times.  Frustrating moments.  I've ellipticalled more often than run outdoors; usually 4 times a week.  I've dealt with mercifully brief bouts of rashes and mouth ulcers.  Work has been busy.  Lots of little critters sick with flu and other bugs, yet still fun with the exuberant spirit of childhood. For instance:  my greeting to a particularly bright 4 year old.... "Oh, no!  Are you feeling bad?"  Impressive snorting and dramatic swallowing of mucus is exhibited, followed by careful placement of busy, slightly gooey hands about 1 1/2 inches apart.  "Not real bad.  I'm only this much sick!"

 There was winter weather.....

Ice, ice baby!!!

Sewing...two practice dresses to get acquainted with my serger and this pattern so as to be brave enough to address print placement and cut into the fabric Ruthie gave me....  But, I did it!!!

                     

Dinners with friends...

Playing with food...as ever...but with large thanks to a dear one who gave me:  World Spice at Home, by Beville and Hearne.  Love it!  Thus far it has produced:

Five Seed Roasted Potatoes...which I really liked:
2 #'s small potatoes   2 T olive oil    1 t  mustard seeds   1 t nigella seeds
1 t cumin seeds     1/2 t ajwain seed     1/2 t fennel seeds     1 t Kosher salt
Oven at 425.  Blanch potatoes for 8 minutes, drain.  Toast the spices in oil until you make a big mess. Toss potatoes with spices and oil.  Spread in one layer on baking sheet and roast for 20-30 minutes.  Sprinkle with salt and pepper.  Yummy.  (Though I must confess, those pictured are only 4 Seed Potatoes, as I did not have the ajwain seeds at that time!  But, I do now!!!) 

Rosie's new fav:  Honey-glazed Eggplant with Ras el Hanout...
Ras el Hanout is a blend of spices (22 in my cookbook!!!) that originally, spice merchants in North African bazaars combined, each making it a little differently, and sold as "head of the shop"!  Luckily, you can find the blend ready made in shops like World Market. 
1/2 c honey     1/2 c olive oil     1/4 c white wine vinegar     1 T ras el hanout
1/2 t Kosher salt     4 small or 2 large eggplants, cut in half moon slices
Whisk ingredients, except eggplants, together.  Toss the eggplant slices in mixture and let sit, stirring occasionally to coat, for an hour or so.  Sear in single layer in hot skillet, though you have to be careful not to let the honey burn, flipping pieces from side to side, until golden and soft.  You will probably have to do this in batches.  Place them on a greased baking sheet as they are done.  Once all are browned, drizzle any remaining sauce over.  They can be done ahead by several hours to this point.  When ready to serve...place in hot oven (400) until sizzling.  Yummy.  Sweet and spicy!

More Sewing with skirts made for Roo...

Reading....
Five Days at Memorial, by Sheri Fink.
The story of that hospital and its occupants during Katrina.  Let's just say: it did not go well!  Here folks had the worst outcomes of the many caregivers and patients who found themselves trapped and desperate during that horrible storm. Suffice it to say, that I can almost (ALMOST, mind you!) comprehend the thought process behind the alleged "euthanasia" that went on at Memorial better than I can tolerate the complete abandonment of care that so many of the doctors and nurses at that facility adopted...from the start!!!  Hell, we send medics into war zones and THEY manage!!!!  It is an incredibly researched, well put together story...but, don't read it unless you're willing to be supremely frustrated!!!

The Immortal Evening, by Stanley Plumly.
The story of a legendary dinner in 1817, hosted by the painter Benjamin Robert Haydon and attended by John Keats, William Wordsworth, Charles Lamb and sundry others....all seated in a large room with Haydon's painting, Christ's Entry into Jerusalem, hanging behind them.  With the guests not only present for dinner, but as part of the crowd in the painting as well.  The book required a great deal more work than a normal read in order for me to appreciate the characters and events. For instance, I learned:  John Keats, think Ode to a Grecian Urn, was a licensed surgeon, and earned his keep that way.  However, he suffered bouts of depression fearing he would never be a poet and died at the age of 26 from TB.  Wordsworth [Remember...I wandered lonely as a cloud...???] was a long-lived pompous old goat who brooked no interruptions or criticism, dying at age 80.  Lamb was a writer and essayist who stuttered but paid bills for himself and his crazy ass sister who killed their mom with a kitchen knife when they were in their early 20's, through his work in an accountant's office.  He never married and took care of his sister his entire life.  I might have to read some of his writing.  He was quite witty and one of his essays is titled:  "Lawyers, I suppose,were children once."  Joseph Ritchie, another MD, stopped by the gathering just before his adventure to find the source of the River Niger during which he fell sick and died.  And then there's Haydon.  A man deeply in love with his wife and children, but the worst provider EVER, focused as he was on his desire for gigantic canvases painted with religious histories...that NO ONE wanted to buy, rather than on paintings of the day and portraits at which he excelled!  He spent time in debtors prison on at least three different occasions.  Shockingly, his plight worsened after every visit.  He was a very good, popular writer/lecturer and a sought after dinner guest being well read and entertaining in this time before TV and internet.  He finally did himself in...in a fashion fitting how he lived...in his studio after his last showing had done less well than PT Barnum's exhibition of Tom Thumb. Initially - unsuccessfully - shooting himself in the head, followed by cutting his neck in one direction...again unsuccessful....finally, in the other he attained his desired end.  However, he will be forever owed a debt of gratitude that I cannot repay.  His admiration for the Elgin Marbles, hidden away in an old barn and then in a backyard garden, led him to petition for and succeed in their preservation as well as the creation of the British Museum!  A more magnificent place I don't think I will ever see.  (Yes, better than the Louvre!)  While I can certainly argue that the Elgin Marbles belong in Greece, at least they are not languishing, hidden from all, in a barn!!! So....not sure if this sounds like a recommendation....but it is!

There was a re-read of All Over But the Shoutin', by Rick Bragg.  'Cause that boy can tell a tale and it sounds like home.

And the discovery of a tiny little book, Three Men in a Boat, by Jerome Jerome. I know, his parents didn't like him. Maybe it's just me, but I found it funny as hell.  Yeah, probably just me.  But...give it a try...it won't waste too much of your time.

There was writing....  Lots of writing. (More to come on that one!) Organizing and researching of melanoma articles.  My personal cookbook - re-done - as it was suffering from all manner of scribbles and notes stuck in.  A French Cookbook from a little place my friends visited years ago...left in my care to translate with B...is almost finished.  Sorry, Kay!!!  Bet you thought it had been swallowed up!!!  But, no!!  It has been well cared for and will soon be done!  And, Eric...your question has not been ignored!!!  I have been diligently putting together information on anti-PDL1: MEDI4663 and MPDL3280A.  A post is coming soon, I promise.

As more scans and another Tampa journey approaches, Spring will come, we will March Forth, and all the ice will be but glistening, fragile memories....

Happy games....no matter the season - love, c

A mixture

The past week has brought "a mixture" of thoughts, feelings, and activities....here's a sampling:

The Mundane:
It was a busy work week, since I worked an extra day.  But, being serendipitously off on Thursday allowed me to catch up on chores and clean my windows!  (Frankie and I are alike, Ruthie!  It requires a Special Leave day to do it!!!)  This effort carries with it, an optimistic view that most of the pollen has done its fertile duty and will remain somewhat less thick.  At any rate, the view of my pink roses with the bed of yellow and cobalt irises beneath is much clearer now.  Friday was the annual March of Dimes, Walk for Babies for which my office always gives a great show of support...
both in attendance and dollars earned.  So, after work we all met there and Bentie was sweet enough to drive down to join us for the event.  Way to go, Peds Care!  And a huge thank you to all the other caring folks who gave their time, money and effort in making the event successful and providing resources for children with birth defects and prematurity.

Funny Date night....times 2:  
1:  So...after the walk...Brent and I decided to check out a new Cuban restaurant near the office.  It had come highly recommended and since Brent and I both love Cuban food and can't readily hit the great spots on Calle' Ocho in Miami were very eager to try it.  In we went and were eagerly greeted by an exuberant fellow...apparently the chef...behind the counter.  While we both spend at least 60% of every work day speaking Spanish...Cuban Spanish is a whole other animal!  The man's excited exclamations were incomprehensible!  Rendering the Brent-ster, whose Spanish is far better than mine, deaf and mute!  So...I was on my own, but in that strange way in which off my beaten path of childhood illness and medical jargon that is my Spanish works for me....after a disquietening 30-40 second time delay...I comprehend...and can move forward in some lame Spanish manner.  And so we did!  Brent's time lag finally recovered as well....and he was soon jabbering away.  He and the chef/owner ended up chatting away about Cuba and how Brent knew so much about this and that and Brent allowed that he had been married to a Cuban.  This brought big eyes with very high eyebrows as the man gestured to me, incredulously!  It was quite a joke, when Brent explained..."Oh, No!  Different wife today!!"  By the end, we were all pals and Brent was speaking in French and English to some new arrivals who were from Cuba as well as the Dominican Republic.  He's a silly boy!  It was fun.
2.  Then, last night we had great plans to run some errands and manage to fit in a date night as well.  At a record pace we made a dry cleaning run, a drop off at the recycle and Good Will, nabbed a car wash, a drug store stop and just as we were ordering decadent fries and dogs at Good Dogs by the park...the phone rings and the doc covering the evening clinic is sick. So....end of date night and B is off to save lives and save the day.  Oh well...finished my errands and got the laundry caught up at home, watching The English Patient while doing my nails.  Brent arrived at the end....heartened as always, to find me watching a "cheery movie"!

SO....you don't like your life:
Odd thought, I suppose.  But, one that's been on my mind lately.  So many folks pick themselves up, deal with the cards they're dealt, move on.  Others...dwell on their bad luck, misery, bad choices, mean people, hard times, etc....and wallow in it.  I'm sure dealing with Stage IV melanoma, or any other terminal disease, changes a person.  I think I am probably less patient....not that patience was EVER my forte....too many things to do and too short a time in which to do them, has always been my guiding principle and I am certain I have not relaxed that mantra one bit. However, I think I am more patient with children and those who are putting forth an effort.  I find myself going out of my way to try to assist them.  I also think that I am more appreciative of things...small and large.  But, have I any patience for whining, complaining, wishing your life was better....or over...NO!  Not at all!  Don't like your life?  CHANGE IT!  Babies and children do it every day.  They topple over....they try again.  They try to speak, no one understands....they try again.  They want to jump, to run, to read...to pass this subject...they work hard...they try again.  That's really all it takes.  Ask anybody with a terminal illness.  One day, you're ok.  The next day, you're not.  They endure this pain, this surgery, that treatment.  They adapt to insults, to limitations, and they move on.  Making the most of every moment they can.  Working to deal with the latest injustice, the disease, or the cure, hands out.  Want to hear the real kicker???  Most of them do it with a great sense of humor and incredible strength.  You know how?  Because they know...LIFE IS A TERMINAL CONDITION!  Nobody is getting out alive.   So you damn well better make the most of it!  Don't like your life?  CHANGE IT!!!!  We ALL.....have the choice.  We ALL can make the most of what we have.  We ALL can make our lives better....or not.

Remembrances:
On this two year anniversary of lung amputation days after brain zappage....it's weird.  Ran very well today...and lately.  Seem to be able to think ok.  Heading down the last stretch towards new scans and more treatments in my tri-monthly punctuated life.  But, my thoughts have been about a small thankfulness...that once, about 25 years ago....I did something right.  When a small patient I was fortunate enough to love and care for, for about 13 years, needed a jugular line placed...I...at age 19 or 20, was smart enough to know...she shouldn't have to do this alone.  Having been through this myself...it is not the least bit fun.  Plastic sheeting over face.  No air to be had.  Numbing agent administered, but given no time to act.  Puncture made and line threaded immediately....a very strange and unpleasant sensation...with all the people around you...acting as though you aren't even there.  But...no!  With mask and hair covering applied.  The rest of sterile technique be damned.  I was under the plastic, sterile drape with her.  To kiss her cheek.  To hold her close.  A sweet baby, with no way to know what we were doing...much less why.  I made sure anesthesia had due time.  That she was safe and felt ok.  I did it right.  For that...I am grateful.

The final mixture:
Take 1/4 c olive oil.  Bring to a gentle heat. Add 4-5 cloves garlic, minced. Warm through for a minute or so...but don't allow to brown.  Take off heat and add:  1 tsp dried oregano, 1 tsp or so of fresh thyme, 1 tsp salt, pepper, the zest of one lemon, and 1/3 c of dry white wine.  Preheat oven to 400.  Coat both sides of 4, bone in, skin on, chicken breasts in mixture and pour remainder in pan.  Place a slice of lemon beneath each.  Roast until fully cooked and skin is crispy for 40 - 45 minutes, depending on size of breasts.  Delicious. 

ENJOY...this recipe...and the rest of your life.....what you have today....what you remember.....it is all any of us have.  Love - c.