A shark attacked a local surfer the other day in the Monterey Bay south of me, at Marina State Beach. I was glad to learn that the young man will survive and is recovering. His friends who helped him get to shore are heroes, in my eyes. Ironically, the Monterey Bay Aquarium had just received a White Shark which had been captured off the coast of southern California.

That made me think again of last weekend's Ocean of Hope where those other surfers had paddled their way across the Catalina Channel (sans sharks) to raise money and awareness on behalf of Sarcoma. I think they were quite successful at it, as $80,000 was raised. Wish I could have been there to cheer them on!

A recent, well-written, article published in the Orange County Register by Spencer Kornhaber grabbed my interest, as I learned about how Keith Munemitsu began the Ocean of Hope campaign on behalf of his High School friend, Suzanne Leider, (picture above) the founder of Sarcoma Alliance.

Kornhaber wrote:

"Inspired by a magazine article about a son who paddleboarded for his cancer-patient father, Munemitsu took a year off work to train for the 32-mile Catalina Classic paddleboard race. He raised money for a local hospital in Leider's honor, and in 1999 paddled from Catalina to Manhattan Beach. Munemitsu's paddle across the channel grew into Ocean of Hope, a campaign to get paddleboarders to raise money for the Sarcoma Alliance by racing in the annual Catalina Classic. Since it started, the number of paddlers in Ocean of Hope has risen from one to 25 and they've raised more than a quarter-million dollars."

I realize there is a difference between paddleboarding and other kinds of surfing, so I apologize to anyone who feels this is not an accurate comparison. In my mind, anyone who uses a board for the pleasure of being "One with the Ocean" has my admiration, and respect, regardless of the type of board used, or the techniques of using it. More than play, this takes an incredible amount of strength, agility, shrewd judgement and a talent for facing the risks of certain dangers the average person does not need to consider. Observing those who ride the waves is the closest thing I can get to enjoying the thrill of it.

I don't know how long Spencer Kornhaber's article will stay in print, but I hope you will take a look at it. Also, here, you can see an excellent follow-up article by the same reporter. It is an odd coincidence that the young man who was attacked by the shark

Suzanne Lieder is no longer with us, having fought the battle with the Sarcoma Beast. In a way, Keith has been her hero, and now the hero of all sarcoma patients, in that he has brought to life the method whereby the Ocean of Hope event can bring opportunity for other sarcoma patients to survive.

The next time I go up to Steamer's Lane in Santa Cruz or any of the other local surfing locations I like to visit, I will be wondering how many other surfers out there on the Pacific might have hope in their hearts for someone they know who has, or had, Sarcoma.

I wonder what would happen if the Ocean of Hope event spread out all along the California Coast. Or, how about throughout the world? Would we, then, have a cure for Sarcoma?

Living near large bodies of water all my life, (Niagara Falls, Lake Ontario, Monterey Bay) I am well aware of my romantically inclined nostalgia over sailing vessels of any kind. So, my interest was immediately peaked when I read a news article about a little girl who lived in Cruden Bay, near Aberdeen, Scotland. It is the home of the mysterious Slain's Castle where Bram Stoker got his inspiration for his story of Dracula. And, I bet you thought he was in Transylvania when he wrote that book!

This would have been Siobhan's 11th birthday. She died of Ewing's Sarcoma. I wonder if she felt the same way about the water as I do. I can imagine her standing near the cliff mesmerized by the sea with the wind blowing through her hair, and the memory of it sustaining her as she lay in her hospital bed wishing she were elsewhere. I often did that when I was in the hospital dealing with chondrosarcoma recurrences.

What does all this have to do with my nostalgia over sailing vessels?

Her uncle, Gordon Morrison, has built a sailboat in her honor and christened it Siobhan. image: It has been launched into the North Sea in her memory. What is different about the voyage is that there are no sailors aboard. The little four foot model vessel will travel alone through the sea by herself. She has been launched from the shore of historical Boddam at the easternmost edge of the land.

Apparently this is a centuries old tradition, but Siobhan's uncle wants to create a new memory with releasing his model. He is raising funds from this endeavor and offering another model sailboat in return for the person who can guess the mileage traveled before the final destination of the Siobhan. Within the model is a satellite tracking device (also a donation) in order to follow the little ship. Siobhan's uncle is doing this in gratitude to the Royal Aberdeen Children's Hospital where she received her care during her battle with Ewing's.

Ocean of Hope is this Sunday. I hope you live close enough to attend.

My friend, Dave Murphy, once gave me a T-shirt with "Ocean of Hope" printed on it. At the time, being thickheaded, I didn't know what it was. Ocean of Hope is a fund raising event specifically aimed toward Sarcomas.

What I also didn't know, was that it was started in order to honor the memory of Suzanne Leider.

I found Suzanne's site back in the late 90's. She had her contact information on the site so I called her. She was so gracious and kind. She understood what I had been through with my own complicated Sarcoma histoy, and we had a bond. I was so sad when she died. But her legacy lives on in the Sarcoma Alliance and in the Ocean of Hope.

The 32 mile Catalina Classic paddle boarding race is like a marathon. Among other participants, a group of paddlers raise contributions every year by racing in the Catalina Classic to benefit sarcoma patients.

"Each racer will spend anywhere from six to ten hours on the water, propelled only by their arms – but, participants say, that's nothing compared to the trials of sarcoma patients."

So, get yourself out to Catalina where the paddlers will head for Manhattan Beach this Sunday. If you can't make it, you can still help out by going right here on the internet.

Do something to help increase the chances for survival for Sarcoma patients.

The last few days I have held my breath every time the update landed in my email inbox from Miles Levin's Carepage. I signed up for it, just like many thousands (I believe) all over the world.

I held my breath because I didn't want to read those words:

"Miles Levin died today."

But, I couldn't be a coward and delete the email. So, I would go to the site and read the latest, mostly from his Mom, as Miles hadn't been up to it. Each day, while discussing it with another sarcoma group leader, it was a little like watching Hurricane Dean travel across the Atlantic building up strength for destruction, and waiting but not wanting to know. Hoping the monster storm will just quietly give up and go away. Instead this is a lot more personal, even though I have never met Miles. It's an unsettling, in-between state of mind, a twisting in the heart, a shaking of the soul. Miles and his family have touched so many in such a personal way. I am one of them.

Sometimes, when condolences are offered, people will say, "He'll never be forgotten." I think in this case, truer words were never spoken.

But, it's my view that there are not enough words on this planet, nor in any language, that will be enough to soothe the deep loss that his family has experienced. Of course, many are able to express what is in their hearts, simply because it seems that Miles, and his family have touched others in ways they never suspected. One could not read Miles' messages and not have their heart opened.

I remember reading somewhere that when the heart opens completely, it opens fully into compassion. Though the joy of opening the heart is incredibly beautiful, one cannot feel compassion without also experiencing the tears that come with it.

We all deal with death in different ways. Some walk away: "I cannot face it!". I don't think they are to be blamed. I have seen it more than once while ministering to my group members, when a family member couldn't handle their loved one's death. On the opposite pole, there is the death where no one has walked away, where the person dying is not entirely alone with it, where the family accompanies him or her as far as that last breath will take them. It's hard to accept, the numbness and desolation.

Somehow, it seems, that we cannot really indulge ourselves in the grieving process because we need to follow through with all that comes next, (whatever the individual choices). It's not simple. Death touches us in the most vulnerable part of us, that part where we want to have some semblance of control in our lives. Are we going to cling to the idea that death is not inevitable, when it is happening right in front of us? Do we not learn how precious is every moment, the turmoil as well as the peace? Do we not make a turn in the pathway our lives have taken, and start a new journey because of the changes brought about by having been left behind?

In other cultures death is a more public experience than we (in the US) are likely to have occur. It is hidden away in a safe place so that we can pretend it doesn't happen, at least not nearby, not in our face, so-to-speak.

But, I think Miles and his family have changed that. This has been a most public life, and death. Miles has been so often quoted: "Dying is not what scares me. It's dying and having had no impact."

I cannot even fathom the impact that Miles has had upon this world. It boggles my mind to imagine all the people who have been gifted with his pure innocence and enlightened wisdom.

I cannot even fathom that Miles Levin died today.

Sometimes I smile and feel so happy inside. Another person has finished with Sarcoma and has the opportunity to go on into the rest of life with it behind them, with the wisdom and compassion they have gained from the experience to live life fully, and let go of the little things. What a price to pay for that knowledge! But, it is with joy that my heart allows me to free my concerns for them.

Sometimes I cry, the tears rolling down my cheeks, or the gut feels queasy, or just plain outright sobbing for people I only know through cyberspace. How can this be? The world is here on a screen, at my fingertips where strangers can open my heart to care so much about them.

Truly, this reminds me, too, keep living life to the fullest. I don't mean just to keep a positive attitude and smile with gratitude at all the good things only. I mean to take it all in, and allow myself to find the beauty and deeper meaning in some of the not so good. It seems to make it easier to acknowledge the difficult challenges life brings. It makes the good things all that more precious. Doesn't it?

It makes me look inside when I am disturbed by some new awfulness in life. The fact that the engine in my car blew and I have no money to fix it. Or, I have to depend on others to take me places. Of course this affects me. But, do I want to torture myself by letting my feelings overtake me? Or a bridge collapses 2,000 miles from me and people fall into the Mississippi River. It bothers me that these kinds of things happen, things I can't control. Things that hurt others. Things that destroy. But, does it have to destroy hope? Or compassion?

It all gives me perspective and patience, and a different philosophy on how I handle things. It makes me value my time and how I spend it. Do I want to go shopping for the latest fashions? Fill my house with knick-knacks? Spend my time playing blackjack on the computer?

No. I want to keep doing what I am doing, moderating an online support group for Chondrosarcoma patients, researching new articles on Sarcomas, keeping this blog so that someone, somewhere might find a little hope, a little understanding and sometimes a a sad story to learn from.

Though I went through eleven years of recurrences and still lived with the sense of waiting for the other shoe to drop. What will the next scan reveal? I have now survived forty years. I used to feel rootless, not able to find my niche in the world, wondering, "What is my purpose?". But, not anymore. Now I know this is it, where every day, sometimes I smile and sometimes I cry.

Mike was first diagnosed in 1985 with Non-Hodgkins Burkitt's Lymphoma when he was 8-years-old. Although the doctors thought he’d not survive, Mike managed to get through his treatments and was in remission within a year. At such a young age to deal with this challenge, he managed to find the positive in everything, even losing his hair. His lifelong friend, Carol, says, "He would look at you and say, 'Watch this!' and with a huge laugh, he’d pull out his hair."

He continued to entertain others with his natural talents through junior high, high school, and college. He graduated from Syracuse University with a theatre degree and moved to NY to pursue a career in theatre on Broadway. He was an incredible singer, dancer and actor.

Soon Mike got a leading role in a family theatre production for the musical version of Winnie the Pooh. Mike then, co-starred in an on stage performance in the musical, "Big River". Shortly after that, he also had a part on the TV series, "Sound Effects". His exciting new career was off to a good start until, in December of 2000, after having some continuing pain in his shoulder, he was diagnosed with cancer again. This time, it was a very aggressive form of Chondrosarcoma found in his spine, and chest wall. Then, it was discovered in his heart, too. A very unusual manifestation.

Mike had nothing but a positive outlook. He was so determined and had unbelievable strength and faith in overcoming it this time, too.

By January 2001, Mike had open heart surgery, chest wall surgery and spinal surgery at Sloan Kettering in NY city. After which, he then went through several months of extensive chemo. Unfortunately, it was soon discovered to have also spread to his pelvis, and eventually metastasized to his lungs.

The doctors were amazed that he continued to be so strong throughout all this. But, when the doctors put him in the terminal phase, Mike started researching alternative therapies and found new hope in healing himself. He tried various methods and treatments that seemed to be so advanced, he thought they would work. He tried so hard to find a way to survive.

Mike died in March of 2002. He was 25-years-old.

"He touched so many lives in such a beautiful way. He was so full of energy, always laughing and so passionate about life and living it the best you possibly can. He was an incredible inspiration giving me the strength to endure through life's challenges, whatever they may be."

You can see pictures from the Team Sarcoma Event in Vermont at:

http://moonrose.phanfare.com/

If you notice that there are none of me, that is because I was taking the pictures.

The following entry is posted in the Italian language. I dedicate today to Kirsty and to those who love her.

London 2004

Nell' Aprile 2003 la mia amica Kirsty noto' una protuberanza sulla parte anterire della coscia sinistra. Il suo medico, visibilmente allarmato, la riferi' di urgenza ad un Ortopedico generico che lavorava in uno dei maggiori ospedali di Londra, il quale confermo' un sospetto tumore.

Dopo una serie di radiografie e biopsie apparentemente inconclusive, l' Ortopedico comunico' a Kirsty che l' unico modo per arrivare ad una diagnosi ben precisa era quello di estrarre il tumore chirirgicamente e poi farlo analizzare.

L' operazione - estesa e complicata - ebbe luogo alla fine di Maggio e il risultato dell' analisi patologica fu che questo era un chondrosarcoma di Grado I, completamente reciso con margini minimi.

Fin da principio, l' Ortopedico di Kirsty si mostro' una persona con cui era molto difficile comunicare: difficile fargli domande e difficile anche avere delle chiare risposte. Sotto molti aspetti, la qualita' della sua cura era stata abusiva e consistentemente carente in termini di un adeguato processo di consultazione con Kirsty. Consequentemente, anche dopo avere avuto questi risultati, a Kirsty rimasero una serie di domande e preoccupazioni non risolte. Durante il corso dell' ultima consultazione l' Ortopedico le aveva detto che c' era un 40% di possibilita' di ricorrenza. Questa era una percentualita' molto alta. Ma era proprio cosi'? C' era un rapporto causale tra nicotina, bagni di sole e condrosarcomi?

Tutto questo insieme di cose, insomma, avevano portato Kirsty a richiedere attraverso il suo medico una seconda opinione da un Professore che lavorava all' interno di una clinica ed una team specializzata in sarcomi. Questa consultazione ebbe luogo in Giugno e le informazioni ricevute da questo Professore, una persona molto cortese ed appropriata, rassicurarono molto Kirsty: non c' era alcuna evidenza di un rapporto causale tra nicotina, bagni di sole e condrosarcomi; e la percentuale di ricorrenze a suo parere era molto piu' bassa: circa il 20%.

Il resto dell' estate passo' tranquillamente, fiinche' in Ottobre Kirsty ando' a fare delle radiografie di controllo. Gia' da qualche settimana aveva notato una nuova protuberanza esattamente allo stesso punto di quella precendente; cosi' che, durante il corso della sua visita, la fece notare allo stesso Ortopedico che l' aveva operata. Dopo averla esaminata, l' Ortopedico le disse che molto probabilmente si trattava di una ricorrenza del condrosarcoma, questa volta pero' nell' anca e piu' profondo di quello precendente. Al quale questo aggiunse che molto probabilmente questa volta l' unica soluzione sarebbe stata un' amputazione totale dell' arto.

Dall' inizio, Kirsty ed io avevamo reagito a questa situazione in modo molto diverso. Ovviamente lei aveva molta paura e quindi non voleva approfondire la sua comprensione delle implicazioni di questo tipo di cancro. Per quanto riguardava me, anch' io avevo paura; pero' mi rendevo conto che c' erano tutta una serie di dure decisioni da prendere e volevo che Kirsty fosse in grado di prenderle alla luce di informazioni chiare sia su questo tipo di tumore sia sulle alternative possibili. Dato che non c' era modo di ottenere tutto cio' dal suo Ortopedico, cominciai a far ricerca su internet. Il seguente e' un esempio di quello che leggevo:

CONDROSARCOMI

I condrosarcomi sono tumori maligni del tipo sarcomatoso nel contesto dei quali sono presenti cellule della serie cartilaginea. Si distinguono condrosarcomi centrali, che originano all'interno dell'osso, condrosarcomi periferici che originano da una preesistente esostosi, oltre ai condrosarcomi periostei, mesenchimali a cellule chiare, di cui non trattiamo perche' piu' rari.

Il condrosarcoma e' uno dei piu' frequenti tumori maligni dello scheletro, si manifesta prevalentemente nel sesso maschile in una eta' compresa tra i 20 ed i 60 anni, ma puo' comparire anche nel bambino e nell'adolescente. Le sedi preferite sono il bacino, il femore prossimale, la scapola, la tibia, la colonna e tutte le altre ossa di origine cartilaginea.

La sintomatologia e' generalmente tardiva per la lenta evoluzione del tumore ed i primi segni clinici si possono avere a distanza di parecchi anni dall'inizio dell'evoluzione del tumore (anche 5 o piu' anni). Nelle forme centrali il sintomo iniziale e' il dolore che puo' diventare intenso quando vengono superati i limiti dell'osso e si spande nell'articolazione vicina. Nel condrosarcoma periferico il primo segno puo' essere dato dalla presenza di una massa voluminosa, dove prima si trovava una esostosi, che continua ad espandersi.

Esistono diversi gradi di malignita' (I - II - III) che sono caratterizzati da una diversa rapidita' di evoluzione e dalla piu' o meno precoce metastatizzazione; dai gradi inferiori, con il trascorrere degli anni, si puo' passare a quelli superiori ed il tumore assume quindi caratteri di piu' spiccata malignita'. Le metastasi sono generalmente per via ematica (rare quelle ghiandolari) e possono essere anche molto tardive, cioè a distanza anche di parecchi anni dall'inizio della sintomatologia.

Radiograficamente il condrosarcoma centrale a prevalentemente osteolitico, ma puo' impregnarsi di sali calcarei, assumendo successivamente radiopacita' . L'area osteolitica si espande nella spugnosa poi supera la corticale dell'osso e deborda nelle parti molli circostanti. Le aree calcifiche si osservano soprattutto nei tumori a piu' lenta evoluzione e quindi a piu' bassa malignita'.

Il condrosarcoma periferico si distingue piu' facilmente in quanto si manifesta attorno ad una primitiva esostosi, come una massa abbondantemente calcificata, che assume spesso la forma del cavolfiore. In alcuni casi la opacita' e' minima ed e' intercalata da aree radiotrasparenti le quail sono indice di maggior malignita' del tumore.

Anatomicamente l'aspetto macroscopico e microscopico variano a seconda del grado di malignita' del tumore. L'esame istologico deve essere fatto su cartilagine non decalcificata per avere un quadro piu' preciso. Nella forma periferica la cartilagine in genere e' ben differenziata, appare molto piu' vitale e rigogliosa di quanto non si osservi nella forma centrale. Si riscontrano nei due tumori, tre gradi di malignita' .

Nel grado I e' spesso difficile la distinzione dal condroma, data solo dalla presenza di cellule che dimostrano una maggiore tendenza alla proliferazione.

Nel grado II la atipia cellulare e' piiu' evidente. I nuclei delle cellule sono piu' voluminosi; sono abbondanti le cellule con piu' nuclei, ipercromici. Nel suo contesto sono presenti aree mixoidi, con cellule a forma fusata o stellata. Nella forma centrale si osserva la penetrazione del tumore negli spazi midollari dell'osso.

Nel grado III si osserva ancora la differenziazione cartilaginea. Le cellule sono piu' spesso atipiche, con nuclei molto ipercromici, numerose ed abbondantemente polimorfe. L'osso circostante viene rapidamente infiltrato.

Le caratteristiche istologiche descritte non empre sono evidenti in tutto il tumore per cui la diagnosi di malignità puo' essere fatta soltanto dopo una accurata ricerca su numerosi preparati istologici eseguiti su prelievi da diverse sedi del tumore.

La terapia deve tenere conto che in questi tumori esiste sempre una progressione di malignita’ che puo' arrivare alla differenziazione cellulare ed ad un conseguente aumento di aggressivita’. La cura e’ esclusivamente chirurgica e va dalla resezione abbondante, quando sia risparmiata la corticale, alla amputazione, quando il tumore invade le parti

molli circostanti.

Il tumore e' radioresistente e non e' sensibile agli antiblastici.

Piu' leggevo piu' paura avevo, piu' mi sembrava importante che almeno una di noi due sapesse precisamente tutto quello che c' era da sapere su questo cancro. Mi sentivo molto sola con quello che imparavo, molto spaventata, molto incerta sul futuro di Kirsty. Mi addolorava il pensiero che dovesse soffrire ancora di piu' di quello che aveva gia' sofferto. Sentivo una profonda tristezza, una grande rabbia, cosi' tante emozioni forti. Fu a questo punto che feci domanda per diventare membro del Chondrosarcoma Support Group, il gruppo istaurato e moderato da Elizabeth Munroz, nella speranza di trovare sostegno e informazioni. E per un anno, questo gruppo fu una sorgente continua di sostegno, informazioni, discussione e amicizia; e rimane tutt' ora una delle esperienze piu' profonde della mia vita.

Nel Novembre dello stesso anno l' Ortopedico di Kirsty la sottopose a un' ulteriore biopsia sostenendo sempre che l' unica soluzione sarebbe comunque stata una totale amputazione dell' arto. Data la sfiducia che ormai era subentrata nel loro rapporto, gia' da qualche settimana Kirsty aveva richiesto attraverso il suo medico che la sua cura fosse trasferita alla clinica dei sarcomi dove era andata per una seconda opinione.

Il trasferimento fu accettato alla fine di Novembre. Dopo una serie di ulteriori radiografie, alla fine del Gennaio 2004 il Professore di questa clinica ci informo' che in realta' Kirsty aveva una ricorrenza del condrosarcoma, questa volta nell' acetabolo. A questo aggiunse che stranamente questo tumore era gia' visibile nelle radiografie fatte a Maggio - cioe' le radiografie fatte prima dell' operazione, e che, data la profondita' e posizione, il loro chirurgo non avrebbe potuto fare altro che una totale amputazione dell' arto. In conclusione, disse che in ogni caso avrebbe consultato altri colleghi specializzati in questo tipo di condizioni per vedere se sarebbe stato possible per qualcuno di fare un intervento che salvasse l' arto.

All' inizio di Febbraio lo stesso Professore rispose a un mio email informandomi che un gruppo di specialisti si erano riuniti per riesaminare il caso di Kirsty. C' era la possibilita' che il problema fosse piu' benigno di quanto non fosse sembrato e un intervento per salvare l' arto era anche stato attivamente considerato. A questo aggiunse che la cura di Kirsty sarebbe stata trasferita all' ospedale dove lavorava questa team di specialisti e che, fosse stato ancora necessario, sarebbe stato contento di riferire il case anche a un rinomato specialista Italiano - cosa che Kirsty ed io avevamo richiesto.

Il 25 Febbraio Kirsty ed io andammo a un appuntamento con il suo nuovo specialista, il quale ci informo che il risultato della reviosione del suo caso aveva rivelato che non aveva mai avuto un condrosarcoma. Quello che aveva sempre avuto, invece, era una condromatosi sinoviale, estesa dalla coscia fino all' acetabolo. A questo aggiunse che, visto che non aveva alcun sintomo, nessun intevento chirurgico sarebbe stato necessario, solo delle regolari radiografie.

Felicita', rabbia, dubbio: tutto in una volta. E se si sbagliassero? Richidemmo che il caso fosse esaminato anche dallo specialista Italiano, il che fu accettato cosi’ che tutte le radiografie e vetrini vennero inviati in Italia.

Il 29 Marzo Kirsty ed io ricevemmo il sequente e-mail da questo specialista:

Suggetto: Diagnosi

Gentile Signora,

questo messaggio e' per confermare che la nostra diagnosi e' Condromatosi Sinoviale.

CONDROMATOSI SINOVIALE

La condromatosi sinoviale e' una rara condizione benigna. Ci sono diverse opinioni a riguardo della possibilita' di trasformazioni maligne di questa condizione. In ogni case, ci sono almeno 19 casi ben documentati di questo tipo di trasformazione.| Differenziare tra condromatosi sinoviale e condrosarcoma puo' essere molto difficile.

Who would have thought that a penchant for eating junk food, would turn out to be life saving? Lucia's husband, Mike, jokes about this in relationship to his diagnosis of Thoracic Chordoma. In 2006, he was having gall bladder problems, which can be exacerbated by eating junk food. Lucia, worried about Mike's suffering, insisted he go to the doctor. That was when his Gall Bladder disease was diagnosed. But, an incidental X-ray was interpreted as the worst possible news. The man she loved who has been the solid gold rock her in life was told he had lung cancer, the deady Mesothelioma. Lucia thought her world had come to an end.

With a thriving business to manage, she felt like she had been kicked by a horse. She literally lost the strenghth to keep standing. Although she had never missed an appointment with any of her clients before, she found it nearly impossible to continue. Fortunately, her staff and co-workers understood completely and insisted she go home. It would be, after all, a long weekend to absorb it all. Her entire salon stood strong, and competently took over her responsibilities.

It was at this time when Mike was able to quickly arrange a second opinion, and learned that under no circumstances should he do anything further until he was in the hands of qualified Oncologists, which were not to be found in his local community. The X-ray had been read incorrectly. There was no tumor inside his lungs. He did not have Mesothelioma. He did have a tumor, though. But it was in his back, at the spine.

Mike was able to have his gall-bladder surgery and his tumor surgery both at the same time. He saw Thoracic Specialist Dr. Rafi, at Loma Linda University hospital, who was able to peel the encapsulated tumor off his bone in one piece. Mike was able to return home in 3 days, and took the rest of the month to recuperate. During this time, since he had been offered a new job just before the diagnosis, Mike attended to his new training, while waiting for his body to heal. Not one to waste time, he also continued to manage the construction plans for Lucia's new Salon.

As in many cases of Sarcoma, the actual diagnosis was not pinpointed until the biopsy results came back. Mike had Chordoma.

Inwardly, Lucia took all this very hard. She had spent considerable time on the internet researching spine tumors. This didn't encourage her as she found so much disturbing information and hadn't understood the true diagnosis. With so much overload of confusing information she felt like her world was falling apart.

But, how could she not be encouraged by Mike, who in the face of it all, continued to do the things he wanted to do, and accomplished so much while being hampered by his situation. She quickly learned how to be strong right alongside him.

Still, she found it helped to have support for herself through the Chordoma Support group. Still, sometimes the worst case scenarios of other members were presented based upon the writer's understanding and experience. And this was unnerving. Lucia had to make a decision to not fall into the trap of fearing the worst. But, she didn't want to sugar coat the situation. Not one to hide behind not facing the facts, Lucia chose to understand that there are possibilities, and challenges they would face that might not always present the best of outcomes. She wasn't going to pretend that everything was fine when it was not. She wanted to be prepared if things got bad, and work her way upwards from there. If she understood all the options, she wouldn't have any unpleasant surprises. It truly helped her to know all the facts, and it turned out that she felt so much better when Mike didn't have all the bad things happen that she feared.

Mike and Lucia are in the best years of their life, with four kids between them, and two grandchildren. This of course, affected the whole family. Rather than keep it all hidden, they shared the diagnosis with their kids. Mike's grown son, like his father, has been a rock throughout it all. Lucia's daughters were shocked that the only man they ever considered to be their Dad was going through this. Facing the situation together, with each other's support has brought them closer together. The grandkids are not old enough to have to know all the details, so they had no added burden of stress, and the family was able to still enjoy life to the fullest.

After Mike recuperated from his surgery he received further treatment at Loma Linda, one of four hospitals in the country that has Proton Beam Radiation, during which time he continued to work and attend classes related to his new training. He was not going to waste a moment feeling sorry for himself. He saw that Lucia needed encouragement to get back to being focused on her work as well. She had already spent too much time worrying thinking about the fact that they had just broke ground on a new salon, when their world was turned upside down by Chordoma.

Lucia says: "I just had to clear my mind of the belief that every treatment was possibly going to cause irreversible damage to my best friend’s body. There were days when I didn’t know if I was coming or going.

It's incredible how all this happened and things are still OK. My salon has done well. The entire staff has been strong and stable, and it just keeps getting better. We finished the new salon within the building permit time, and looking back, I can’t believe Mike did this for me, all while going through such a major life crisis.

I learned that the best thing to do is surround yourself with good, positive people including family, friends, and clients. The little things, including all the unnecessary drama, really don’t matter in the big scheme of life."

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I haven't given up on keeping the Blog.

This last week has been quite challenging while I have been fighting off Bronchitis.

Got some antibiotics and am doing better. Now, my Asthma has been aggravated.

So, I have been needing to focus on taking care of myself. In the meantime, I have also been catching up on taking care of my Group. So, please excuse me for not keeping up.