David's Eulogy

Greetings friends,

In this, the last blog entry, I am posting the eulogy that our friend Debora wrote and delivered during David's memorial service. Many of you asked for a copy of it, and it is a beautiful tribute to David.
There is nothing in this life that does not remind me of David. While the children and I are struggling with the emptiness of our lives after he died, I take comfort in the knowledge that he lived a rich and full life, and was blessed with more true friends than anyone I have ever met.

Peace and love,
Monika


Eulogy


"I am beginning with a poem that Monika wrote for David:


Phone call to my husband

A thousand miles from home
I walk a beach, look for
sharks’ teeth and shells,
talk to you on the cell phone.
your voice against the hum of the ocean
brings me the contours of your face,
the muscle and tendon
of our unity. As you speak
I find dusky cones with creatures
still inside, their flesh
foreign, vulnerable,
those I throw far into the sea,
and you tell me of the peace march our children went to
and the dogs chasing each other in the snow.
Later I lay out my collection of shells,
Ponderous Arks, Fragile Surf Clams,
Spectral Bittersweets,
whole and broken, together
they seem a map of our lives
the surviving parts.
The slow builders and destroyers
of all the world’s structures,
patiently having left their
signs and markers for us to find.

Monika Andersson


Monika, Lucas, and Amanda, Dorothy and Jimmy, Sandra and Mike, and all of David’s close network of in-laws, cousins, nieces, nephews, and godparents from his Worcester childhood
And to - Linnea, Margaretha, and Hakan from Sweden,
We as friends, colleagues, artists, teachers, and students, have gathered here together as one family to offer our deep and abiding love as we pay tribute to and mourn the loss of our beloved David.
The past two and a half years have been difficult, spent suspended on a tightrope between mountains of hope and heartache. Yet, through it all, Dave shared his journey, exposed us to the very core of his humanity, and taught us that even in the most turbulent of times we can learn from each other, laugh together and that the courage and honesty that Dave and Monika have made available to us have made us wiser, stronger, and less afraid.
In a passage from the Tibetan Book of Living and Dying, a book Monika and Dave have both found comforting, Sogyal Rinpoche says,
“So each time the losses and deceptions of life teach us about impermanence, they bring us closer to the truth. When you fall from a great height, there is only one possible place to land: on the ground, the ground of truth. And if you have understanding….then falling is in no way a disaster, but the discovery of an inner refuge. Difficulties and obstacles, if properly understood and used, can often turn out to be an unexpected source of strength ”

In the hospital room at Emerson in those first days, a doctor came in to confirm the cancer and answer questions. The best treatment options were the fine doctors at Mass General, she said solemnly, telling him that if he were her own brother she would send him there. Then Dave asked in true Dave character: “ Ok, but let me ask you this, do you like your brother?”
And so it went over the course of the next few years, his humor and sharp wit mixed in to ease the tension and make it bearable in the most difficult of situations for anyone in the room.
And he always brought it down to a personal level, asking one doctor if he would do a risky procedure if it were his own son. Even busy doctors were drawn to him and could be found chatting at his bedside, having long, philosophical conversations about life.
They were inspired by his genuineness and his willingness to brave uncharted territory in the hopes of a continued life.
Before the risky surgery to put in a stent, Dave said to the surgeon, Dr. Calva: “Remember Doc, if you get to the point where you feel you should stop, keep going. Just keep going.”
Dr. Calva called him a brave man, one that furthered medicine, letting them know that procedures could be done much further along in a course of a disease.

Dave came from a wonderful, small family in a close-knit Albanian community in Worcester. Even from his childhood experiences photographing birds and identifying animal tracks Dave had a love for the natural world. He grew up next to conservation land, and even now when you look in his studio you can see collections of twigs, bones, nests and other natural artifacts he must have explored with great excitement as a boy. His passion for observation and making things by hand brought him to Massachusetts College of Art where Dave, Monika and I met in the photography program and became friends.

Before my commencement ceremony Dave was deep into telling a story, gesticulating wildly with his hands when his full glass of red punch cascaded down the front of my white dress, an event that cemented our friendship forever. Little did we know that our lives would parallel to such a degree over the course of the next thirty years. At 19, Dave was fairly impressed with himself for befriending the shy and talented Swedish girl that would become his wife, the mother of their children, and my best friend, and that all of us would be working artists, using our passion for photography to teach at the high school level.

Dave and Monika were inseparable since they first met in college, like the myth of Bacchus and Philemon that Dave liked to relate to Monika so often, about two lovers who longed to be together forever and upon their death the gods granted them their wish by turning them into one intertwining tree. That is how they saw their marriage. Dave called her Moon, Mandingo, and my Goddess.
She thought of him as the sun and she was the moon. She felt she was the indirect surface reflecting light, and he was the source. Not that one was greater than the other, but they existed in perfect balance.

Of course, their marriage, like all marriages, was not without its difficulties. Dave could be a tad bit bossy. And he had a knack for teasing Monika. He renamed all of her beloved chickens after famous chicken dishes: Cordon bleu, fricassee, coq au vin, parmesan, and stew spelled S-T-E-W who later became Gropius Dingle Claw. But Monika also knew exactly how to get Dave’s goat. She and I would often make up silly songs together, and we would bet in secret with 99% accuracy how many seconds it would take before we would hear him shouting, “Monika, Girls! Please stop! For the love of God. I’m leaving the room, I’m gonna leave!” as we laughed hysterically in the background. In the hospital under a heavy dose of medicine, Dave once yelled out “Monika, don’t touch my urinal! They’re going to think I’m the lunatic instead of you”, even though she was nowhere in it’s vicinity. They found a harmony that most couples can never attain. Every time Dave went on a trip, he would collect and bring back heart-shaped stones for Monika that now are visible throughout their house, a simple reminder of their unbroken friendship and imperishable love. Their home is a testament to their shared love of things: branches and yardsale gems garnish table tops and window-sills, rusted, broken objects are hung proudly on the walls next to beautiful pieces of art. Every ugly and broken piece of something, every stone or shell or twisted lump of roots that ordinary people would pass by unnoticed might be spied by them, collected and could be given a place of honor in their home.

Those of us who knew them held their marriage in high esteem. Editors of each others’ work and best supporters of each others’ art, they were two halves of a whole, intertwined like Dave’s tree, almost to the point of being able to read each others’ thoughts. One mind, two bodies. You could barely say one name without the other’s attached to it, Dave and Monika. They honored each others’ art, beliefs, and approach to life with admiration, patience, and compassion. In his final weeks, Dave told Monika “you are a magical being, don’t change”.

Their love for each other is clearly shown in the balance with which they raised their children….. Dave’s plethora of exuberant “you should’s” blended exquisitely with Monika’s calmer view of self-discovery. While Dave encouraged Lucas and Amanda to throw themselves into everything they do, Monika gave honest answers to all the questions they asked and encouraged them to be openly loving.

Both of them encouraged creative thinking, independence, and exploration into how things work. This was evidenced in Lucas’ two story Rube Goldberg style dog biscuit deliver system invention, which included pulleys, a basket, and some active dog participation. Amanda was the young entrepreneur of hand-made stuffed animal and cake baking businesses.

Even though Dave bought a boat, it barely made it out of the Brighton driveway. So Dave carved mackerel and salmon out of plywood, and Lucas sat in the land-locked boat and learned to fish. Dave and Monika made close bonds with their children’s friends and welcomed them as family.

They translated the balance of their personalities masterfully into the raising of two children who have developed an appreciation for nature, are good world citizens, have become actively engaged in life, and who understand the importance of friends and family, like their parents. Both Lucas and Amanda have shown amazing fortitude, maturity, and love to their parents through this difficult time.


Before moving to Concord, Dave and Monika first bought a house in Brighton where their children were first raised and they were all part of a community of friends, neighbors and artists.

in 1999 he received official honorable citizen citations from both the City of Boston and the State of Massachusetts, for his “countless hours of service and dedication to the Hobart Park Neighborhood Association”, which were rewards for his community building and advocacy on behalf of the Brighton neighborhood where they lived.

But Concord has been his place, and you are his people. Fresh out of grad school at Yale he took a one year replacement position at Concord Academy, followed by a visiting artist job at Concord Carlisle High School where he remained for the next 25 years.

He has built alliances here not only through his classroom teaching but in his community engagement with the Concord Art Association, the Communities for Restorative Justice program, and asking his friends (Monika and I, at least) to participate in the armchair travel lecture series for local residents. His numerous involvements at the high school included the Weeds organic gardening program, being a strong advocate of his fellow colleagues, and he always worked hard to champion the arts in education. Dave’s energy was boundless and his commitment to this town, unwavering.

That is why it shouldn’t have been such a surprise to see the incredible outpouring of generosity to Dave and Monika and their family from the time of his diagnosis that has continued to this day. Nothing warmed Dave’s heart more than to know what he had given his life to, the concern for and love of people, came back to him in bounty. The incredible meals, garage-building, acupuncture, shoveling, firewood, snow blowing, chicken feeding, dog walking, hospital driving, contacts and medical advice, friendship and love that poured out to us is a testament to a wonderful community that takes care of a resident who has made such a difference . Over a cup of coffee one morning with Dave, Monika and I had confessed that we thought having led quieter lives, had the roles been reversed, and it had been either of us instead, that perhaps we could count the people that would be there for us on our hands to which Dave replied with a smile: “Don’t worry girls, I’m going to lend you some of my people, I’ll get the numbers up there for you to at least 15, maybe even 20.”

I know that Dave was that one in a million teacher, the crazy, boisterous guru who on Halloween donned a caveman outfit. He was real, made everyone feel important, and was the only teacher I have ever known to get away with saying things in a classroom like:
“What are you thinking, are you on crack?”
“I’m going to smash you. I’m going to get in trouble. And it is going to be worth it.”
“Electroshock therapy: you, me, a toaster oven, and a bucket of water.”
“The quality I like most about myself is my ability to control my rage in the workplace.”
“Ah!...There is a God!...Just kidding, there isn’t.”
Dave also packed some serious garlic onto the garlic bread he made at home and brought in for lunch. On one occasion a student felt the urge to protect himself with a facemask when talking to Dave in class. This was also caveman day, and the day that the school superintendent and State board of education person came to visit his class. After the first few questions to Caveman Dave he asked: “And what practical applications do your classes in photography give to students for their future?” To which Dave replied, “Nothing, … absolutely nothing!”
But we know that this isn’t true and that if you have read his blog his students are the ones who say it best. Here are a few excerpts;
You always felt as much a friend as a teacher, which is a rare thing, especially at the high school level. My love of photography continues, and to this day I can still hear your voice in my head, “No squirrel pictures!” :)

Sincerest thanks for teaching me to believe in myself and that my art is worth creating and sharing with others.
The time spent in that classroom flew by and before I knew it you were helping me send in portfolios to college. I just read the post above mine and laughed out loud thinking of that squirrel picture you used as a demonstration of poor framing. We have a billion squirrels on our college campus and every time one scampers past I honestly think...how on earth would someone take a good picture of a squirrel? Not sure it could be done but if anyone is the man for the job it would be you. You have changed my life
You remain the one teacher who gave me detention. I deserved it!
Prifti, 

We both know I rarely did work in photo, but yours was still the class I learned the most in…You are not only the best teacher I’ve ever had, but also the best man I’ve ever known. I can’t adequately express how much you’ve impacted my life, so a simple thank you will have to suffice for now. Thank you for always making me smile. Thank you for teaching me how to do tintypes, which you assured me would get me into college and get me a husband. Thank you for teaching me how to slide when you weren’t even my softball coach. Thank you for your endlessly entertaining stories. Thank you for being the one teacher I was comfortable talking to about anything. Thank you for allowing me to be myself in your classroom, when I was too shy to be myself anywhere else at school. Thank you for being more than just a teacher, thank you for being my friend. Thank you so much for being a part of my life and inspiring me in every way. It is my life goal to be awe-inspiring, just like you are.
My fondest memories of high school are in your classroom, which was really the only place I didn’t feel lost at that point in life. I don’t know who I’d be if I hadn’t known you.

When I picture you, the first thing that comes to mind is your plaid button ups and ability to quick-fire insults at us. You were the first person I have ever shed tears over, and the first teacher that I have ever truly loved. Your legacy will live on through your children and your students.
I will be taking pictures for the rest of my life, thinking of you with every click of the shutter. I have never liked a teacher as I have liked you. I remember that one time when we were discussing religion, and we both agreed that we were agnostic. So, in honor of your agnosticism, have a great time in your next life as an eagle, or in heaven, as a spirit on earth, or in nothingness. And, take lots of pictures.
And my personal favorite:
Dave,
Things I have learned from you:

• Fresh eggs are way yellow-er and cook better than store bought.

• Once you name a chicken, you cannot eat it.

• Junk is rusty...Good Junk has patina.

• Art is created from passion. Craft is your passion perfected. Arts & Crafts is something Girl Scout Leaders do with popsicle sticks and pipe cleaners.

• Collecting skeleton keys is fun (my collection is still very small).

• If you have to have radiators, ornate ones are beautiful.

• Cavemen were in vogue way before Geiko made them mainstream.

• The traffic cone from your truck had a better vacation than me. It also looked better in vacation pictures!

• Eagle Scouts Rule!

• Ugly can be made beautiful with the right light and extra time in the darkroom.

• Very few people in this world will ever be as loved and respected by as many individuals as you.



And from a parent:
When we send our beloved children out in to the world, you are the exact person that we hope and pray will find them.

Everyone he encountered could not help but like him. He had an undeniable pull with people, and those who stayed in his orbit quickly grew to love him. Dave’s boisterous humor and his razor sharp wit could draw out the best in anyone. For this reason, he had a plethora of admiring friends and followers. Monika and Dave welcomed several people, including myself, to live with them in their home over the years. They became shepherds to a colorful flock of live-in artists, philosophers, and even a monk named Amdu, who could be seen snowblowing the drive in his Tibetan robes.
Dave’s relentless energy for creating, his positive outlook, and his unwavering belief that we can choose the life we live and live it with uncompromising joy and boundless exploration captured the hearts and minds of all he touched.
He was so prolific in his art-making, even the most accomplished artist would envy his stamina and passion.
Dave would go to extreme lengths to accomplish the work he set his mind to and engaged his friends in his endeavor. Friends might join him foraging on garbage day for unusual finds, combing the beach for shards of marble, and burying wood in the yard of the Brighton house for termites to eat until it was ready to be made into a sculpture. . In his friends, he had an army of faithful helpers ready to pull their car to a screeching halt on the side of the road to grab a piece of rusty metal that they knew he just had to have.
These favors were not an inconvenience to his friends. We felt blessed to be included in his work.
For instance, he could get my daughter Hannah to climb into the icy, muddy Assabet river on a spring morning in a thin, sleeveless dress and lie there shivering for two hours to pose as Ophelia for his series on mythology. To her, he was a mentor, a father-figure, and a close friend. He encouraged her more than any teacher to pursue her art and her life with honesty, integrity, and a brave sense of curiosity.
Six years ago, Dave took a workshop in Wet Plate photography at Bennington College where he met a group of artists who would become an integral part of his life and passionate artist-friends. They gave to each other many hours of meaningful discourse on photography and life which Dave loved so much. Calling themselves the Masterplaters, they worked together, fed each other’s spirits, and enjoyed each other until his last days.
Dave is not a person easily forgotten. Although his work will be held in galleries, museums, and private collections, it was always the making of the work that interested him the most. And, of course, the talk of artists.
Such was the effect of his generosity and unrelenting positivity. Despite his departure from this life, we still hold this effect he had within us, and we can use it to try to live with the compassion and vivacity he had.

By Dave’s example we have learned much about the importance of hope in the face of adversity, the paring down to what is truly important, the love of family and friends.
We will always carry Dave with us - each of us have our own particular memories: the creek of the stairs at 6:45 as he carried coffee to Monika before heading to school each morning, the friendly banter of student and mentor, the loud, sparring jokes of colleagues on poker night, his sideways smile, his hearty laugh, the glass of red punch.
Once, during the last weeks in a talk with Lucas he said: “My boy, it doesn’t matter what path you choose. You have so many options. Whatever you do, live your life with passion and compassion and you will have a magnificent life.”

This belief was echoed by Henry David Thoreau who said:
“You must live in the present, launch yourself on every wave, find your eternity in each moment. Fools stand on their island of opportunities and look toward another land. There is no other land; there is no other life but this.”
Dave, we love you, and thank you for making us part of your own magnificent life."

Written and delivered by Debora VanderMolen

David Prifti 1961-2011

David left this world on November 21 at 11.04 pm, surrounded by his loved ones.
He will be very much missed by his family and friends, whose lives were made better and happier for knowing him.
A memorial service will be held for David on Wednesday, November 30 at 4pm, at First Parish Unitarian Church in Concord, MA.

May peace and love fill all of our lives.
Monika

I came home from the hospital last Thursday, and have now entered home hospice care. I am facing the end of my life.
We don't know when this will happen, but it is now time for me to be with my family. Over these last two and a half years, Monika and I have been blessed with the love and support we have received from all of you. What could have been a time filled with only pain, fear and uncertainty, instead became a lesson in generosity and friendship. It has carried us through the darkest of times. For this I thank you.
Now I welcome your prayers for a peaceful passage.

Peace and love,
David

New Plans

Yesterday David's operation was cancelled due to risks of complications, which would outweigh any benefit. Because his blood infection involves the stent area, the removal of the clot would be too dangerous. We are now regrouping, making new plans that will allow him to come home and do a 6 week cure of antibiotics, in order to get his bacterial infection in check. Today he is being moved out of the ICU, since his blood pressure is back to normal, and we look forward to the beautiful views of Philips House, the fancy floor of previous stays. Hopefully he will be coming home in the beginning of the week.

Peace,
Monika

Hospital transfer

Last night David finally got his transfer to Mass General, in order to get access to the specialists there. The two chubby paramedics who brought him in were like a comedy team, a modern day Abbott and Costello perhaps, cracking jokes and making David snap some zingers right back at them. I was very thankful for the ease and joy they brought to their task, and it completely broke up the angst of the moment of separation as they took him away in the ambulance.

We were very relieved that a bed was found for him at Mass General, and he is now resting in the Medical ICU until tomorrow, when Doctor Calva will clear out the clots from his vein and his TIPs stent. Today he again got tapped, with five liters of fluid being removed from his stomach. He also had a CT scan to check on his blood flow in the affected areas, and an Electrocardiagram of his heart. That doctor told him his heart is the finest and healthiest example of a heart he has seen in 20 years, and promptly left behind a series of grainy ultrasound images showing said heart. We could barely make head or tail of the pictures, they all sort of looked like cartoon characters.

The team of doctors working on David is world class. Hopefully David will be restored to his old self after tomorrow's procedure!

Peace and love,
Monika

Developments....

Yesterday David had chills and a fever. I called his MGH medical team, and they suggested I bring him in to our local hospital, Emerson Hospital, for blood tests and to tap 6 liters from the rather substantial fluid deposit in his stomach. When the triage nurses saw him shivering and shaking from fevers, he was promptly admitted into the Emergency Room. Being a holiday, it turned out that no personnel was available to tap his stomach fluid, so they decided to keep him in over night, in order to perform the tap this morning.
Today they tapped him, and they also did an ultrasound to check for blood flow in his system. By afternoon they had found out a number of things. Firstly, both his portal vein and his TIPs stent are completely blocked, presumable by blood clots. Secondly, one of the bacteria in his blood has started growing, almost to the point of turning his blood septic. Thirdly, his blood pressure started falling to near dangerous levels. Tonight Emerson hospital transferred him to their ICU, and a call is in for a transfer to MGH hospital when a bed opens up. His blood pressure had to stabilize before he could be transported. As of now, he has been put on blood pressure medication, which has raised his blood pressure to a normal range. One of his antibiotics has been changed out for a stronger one, in order to combat the breakout infection in his blood. David and I are obviously disheartened by this turn of events, but we feel confident in the care of his doctors. Good energy and prayers are most welcome.

Peace,
Monika

David is home again!

Yes!
He is once again home!
We are very pleased!

Peace and love,
Monika

One step back....

Last night David spiked a fever, and I had to bring him back to Mass General Emergency Room. His stomach is still filled with fluid, and the doctors were concerned there may be some infection in his body. Blood tests have been done, and more are to come. Tomorrow his medical team may do an ultrasound exam, and perhaps remove more liquid from his stomach. We are hanging in there, expecting more answers and solutions.

Monika

Released from the hospital!

David is now at home! He is still very tired, he still holds a lot of water in his body, and he is not yet ready for visitors. He has home care nurses coming over to help him with IV medications, and he sleeps a lot. But at last, after three long weeks, he is back home! We are all delighted!

Peace,
Monika

Doing better!

After a few days of medical ups and downs, and doctors with varying opinions, it is now fairly clear that David is getting better. The bacterial and fungal infections in his blood are going away. His liver values are returning to normal. His temperature is no longer spiking. And his water weight is greatly diminished. He is still battling pain issues, and he has lost all the hard-won weight he put on over summer. We will have to feed him a lot when he gets home. As of now it sounds like they are preparing to send him home in a few days. I'll keep you posted!

Monika

Yesterday evening David was transferred out of the ICU and back to his posh single room with the fabulous view. It is a step in the right direction, but his blood tests show a new bacteria in his blood, one which requires yet another switch of antibiotics. A few days ago he had entrococchi bacteria, now he has gram negative rods. It is tricky to find the right balance of drugs, to fit each new species.

David is also retaining a large amount of water in his body, but today he was finally well enough to be put on diuretics, so that he can start to shed some of his water weight, which is probably in the range of 60-70 pounds worth. Such a large amount of fluid stresses his body, and makes him quite uncomfortable.

This afternoon the doctors did an MRI on him in order to try to pinpoint from where his infections originate. If they cannot treat the site from where all these infections arise, they will keep recurring, and that will not be workable. No word yet on what they found on the MRI, the image will have to be read by experts. We are hoping they can find some answers this time, and that we will know more tomorrow.

Peace and love,
Monika

Late Friday night David was transferred from the ICU to a fancy private room, with a view of the Charles River, and hallways with mahogany- paneled walls. It was posh. He enjoyed it for the weekend, then late Sunday he started having chills which persisted through the night, due to high fevers. His blood pressure dropped, remained low, and on Monday morning he was transferred back to ICU.
He has an infection in his blood, with a bacteria that is resistant to Vancomycin, and instead needs heavier antibiotics. This morning blood tests showed that he now also has a yeast infection in his blood. The doctor told him they will wipe out both the bacteria and the yeast by using powerful antibiotics and anti-fungal medicines respectively. This will keep him in the ICU for a bit longer though. Dave will have a CT scan later this afternoon, when they will look for infections in his body. More later.....

Peace,
Monika

Update

Sorry it has taken me a few days to get this update to you. One of the reasons for my tardiness is that school started back up, so I've been running between work and the hospital and coming home exhausted and dejected to walk the dog and crash. The other reason is that David seemed stuck in a cycle of mental confusion and sleeping, and I could not get a sense of where things were going.
Yesterday David was much better, and almost back to his own self, at least mentally. Just the day before he was hallucinating something crazy. A sampling of his drug-induced wisdom:
"This room looks like a Japanese kid's room." (About his hospital room).
"Raw fish, raw fish, just like at a Japanese birthday party."
"Look at those big flowers all over the wall. It's very Japanese." (He was on a Japanese kick that whole afternoon. He had had a Japanese nurse in the room for a couple of minutes.The day before that though, he had been in a Vietnamese restaurant for most of the day....)
Then he was ordering food. He was starving. He hadn't eaten for six days, and circled some 12 items off of the menu, including, soup, turkey pot pie, mashed potatoes, gravy, butter, rolls, blueberry pie, vanilla custard and chocolate ice cream. Then he turned to Amanda and said:
"You're not going to eat my food, are you?"
"No, of course not. Why would I?"
"Maybe you are trying to be Japanese."
"Why, is that what the Japanese do? Eat your food?"
"Yeah-uh! When their economy is in the tank it is."
Then he turned to me with an accusatory look, and said
"Monika. Will you stop playing with my urinal! They'll think I'm the crazy one."
I told him I would try to refrain myself.
Later he told Deb she couldn't stand up because she had a snake wrapped around her leg.
We were much amused, but it was also very worrisome. I couldn't tell if his confusion was strictly drug induced, or if there was something more dire going on. That was why it was such a relief to see him yesterday, completely lucid, and with his faculties back to normal.
Over these last few days he has been through a lot. He has been given 12 or so bags of blood. They did a procedure where they went in and unclotted his stent, which had become blocked. That went well, but he is still retaining fluid. He stopped bleeding, then started again. His blood values have been stable, then dropped again. Today they performed a colonoscopy, to try to figure out where he is bleeding from. David was up all through last night, prepping for the colonoscopy, so he is very tired today.
More later.....

Peace and love,
Monika

Knocked down a bit

We had a wonderful time at Nicky's and Nam's wedding last weekend in Baltimore, where David was the officiator for the lovely couple. It was a most beautiful event, and we danced and laughed and loved every minute of it!

Our week started up after Labor Day, and David went back to teaching, all excited and happy to be back in the normal routine. Then, on Thursday eve, he started vomiting up huge amounts of blood. He was home alone at the time, and called 911. He was taken by ambulance to Mass General Hospital Emergency room, where they admitted him as an acute case. Later in the night he was transferred to the ICU, where he remains today. He is doing better, and we both feel that he is in the right place, care wise. The first 24 hours he received seven bags of blood, which stabilized him. He has remained stable, only needing one more bag of blood, he is bleeding less, but they have not yet figured out where the bleeding is coming from. He is pumped up on pain killers, which makes him very tired and incoherent. Today he was allowed to sit in a chair for a while, and was put on a clear liquid diet. That is after having nothing but ice chips since Thursday night. He is progressing, and carefully watched. Being the weekend there are fewer doctors on duty, so from my end it seems that he is in a holding pattern until his regular team comes back tomorrow.

Things are moving in the right direction, but we are of course disappointed at this latest bump in the road to his recovery. I will write more later.

Monika

Changes

Today was a good day.

I was pacing around as I talked on the phone, and I came across my wedding ring hanging on an ornate candelabra. I had put it there a couple of months ago when I was at my weakest health and lightest weight, after it actually fell off my finger. Before, it had always been a chore to get it off. That was a low point for me; realizing that I had wasted away that much was hard to take. I put it on the candelabra so I would know where to find it.

Today I put it on my finger and it stayed put, and would require real effort if I wanted to take it off again.

It's been hard to accurately gauge my weight. I weigh myself every day when I get up, but it often fluctuates daily by several pounds so I try and look at weekly trends.

I have now passed the ring test and am clearly gaining weight. So my goal is to continue to work on strengthening my body, staying healthy...and gain some more weight.

Good News!

Good News!

After meeting with our oncologist on the 30th he told us that we couldn't possibly have had better outcomes to the procedures, that everything is working properly, and things are as good as they can be. After 5 months of difficult procedures and dire predictions we found ourselves stunned and flummoxed by his positive words! He also said he didn't think that David would still be alive after these past months. He said that he could not be more pleased with our progress, and that medically we are back on track. The stent and the blood thinners are working, and the ascites is gone. We won't need any more blood tests, and now we'll just have follow-up appointments every month, and intermittent CT scans to watch for the cancer returning.

We drove away from the appointment in a kind of daze. Only that week had David had to have his blood checked multiple times to check for a disorder caused by blood thinners. That came up negative. Now this! It took us until the next day to start to believe that David is now back on track, and that his body has taken a turn towards health.

We do know that things could still go wrong, but as of now we are hopeful and much relieved! David is spending his days building strength, muscle mass and gaining weight in preparation for getting back to teaching this September.

Rebuilding...

After 15 days os self administering IV antibiotics, I am now slowly getting my strength back. The antibiotics left me weary, tired and weak, plus I still have a bunch of medical issues related to fluid build up, pain, acities and weight loss. A lot on my table to deal with...

As I work out the variety of medical issues with my medical team, I am also on a rigorous alernative plan involving diet, exercise and naturopathic medicine. I am just now starting to feel some positive results...

My goals for the summer are clear.

* Resolve medical issues.
* Rebuild strength and energy
* Gain weight and muscle mass
* Be prepared to teach again in September

Everyday brings me a bit closer; and barring some surprise medical drama turning up, I should be good to go.

Home Again...

Just as I felt I was gaining strength and health back from my long MGH stay, I woke up early on the Friday of my 50th b-day, feeling like I was going to die of chills and delirium......Monika's previous post describes the day nicely...

Birthdays have never meant very much to me, and this year all I wanted was to have a small meal with the handful of friends who saw me everyday at MGH and got me through the ordeal with their love and daily presence, so I could thank them for getting me to #50. So I'm glad I was still able to do it...

The rest of the 4 days were spent trying to determine specifically what type of infection I had and to see if there are any issues with the stents or surgical sites from the MGH work. Happily (so far) everything seems fine in the scans with all my previous issues so we are hoping that this is just a separate infection that will not have ramifications in an ongoing way.

I will be receiving 10 days of IV antibiotics at home with the help of a visiting home nurse service. They will train me how to administer the antibiotic and be on call to help with any issues that arise...

Even in the comfort of a single room, and with me having only a few medical things done to me each day; I realized how much I needed to be out of hospitals right now. I was starting to become anxious that I'd have to spend another couple of days until all test results were in, or worse, that they would send me back to MGH for observation. I need a chance to build my identity away from hospitals and sickness, and my being back in the hospital set me off. My stress was considerable, but luckily my local GP doctor came everyday to see me and he understood that I would heal better at home, so he made it happen. I still may end back at MGH with bigger issues, as we chose to go down a perilous road with lots of risks, but for now at least, it's back to quiet methodical healing and rebuilding in the sanctuary of my garden and home, hoping that this infection is unrelated to all my other issues and that I am on track to become healed...

Time will tell.

50th Birthday....and complications

Yesterday was David's 50th Birthday! The preceding week he had been steadily improving, getting healthier and stronger each day, as he puttered around the garden, buying herbs at the nursery, planting tomatoes, walking with me and the dog. Then, early morning of his birthday, he woke up feeling sick, had cold shivers, ran a hot bath, but could not get warm no matter how hot the water was. He puked.... I took his heart rate and temperature, and both were running very high. I called his MGH team, and they told me to take him to our local hospital, so that they could properly monitor him. We spent most of yesterday in the emergency room, and around 5 pm he finally got admitted. Meanwhile we had invited a few close friends for dinner. In the end, I held the dinner party without David there, and then we all went to the hospital with cake, sang for him, and hung out. While this was certainly not how we had planned to spend his birthday, it was actually a very beautiful thing, and luckily David had a single room, so we didn't disturb anyone.
After multiple tests and scans, it is clear that David has an infection. Where it is, we may find out tomorrow after his CT scans have been read. Until then David is resting nicely in the hospital and getting the medicines he needs, which is good, because it was a little scary to see him so sick and feverish yesterday. He does feel and look much healthier today.

Peace and love,
Monika

Home...

Well, I made it home yesterday after what can only be called a very difficult 17 days at MGH. I come home with a fair amount of healing left to do, and a lot of things to balance as I transition back into my life.

My care at MGH was extra ordinary, from the team of doctors that managed my VERY complicated case to the nursing staff which was truly amazing. I dodged a lot of bullets during this stay and am really lucky and grateful to still be around. The level of knowledge, support and caring I received was like nothing I have ever encountered at a hospital (and I am used to getting very good care). The nurses and aids helped me through some pretty dark times...and I am most grateful.

After I was stable and able to be free of machines and IV's, it became clear to me that I needed to get home to really heal. Time is suspended in the hospital...day and night blur as you get checked 24/7, tested and attended to as buzzers go off, people moan, and staff rush around... you never really sleep and are always out of balance. At times, I needed LOTS of care and then lots of vigilance to make sure that I had stopped bleeding and it was safe for me to go back on blood thinners and prepare to go home.... So now that I am home, I can bask in the peace of my garden and the presence of my beautiful family. I already feel stronger.

The coming weeks will bring some challenges that I have to work through, but at least for now, I am in a great place, and hope to get my body back on track...

Thank you to all my friends and family by my side that saw me through this and for all of you who have kept me your thoughts...

Turning a corner...

Today David looked and felt well. His blood crits were holding steady, and the doctors think his inner bleeding has stopped. For some periods during the day he can now get unhooked from his IV lines, and has taken a few walks outside in the beautiful spring weather. He says it revives him, and that he can feel the healing influence of the sun on his body. This evening he looked very stylish in his hospital gown, as he and I went for a stroll at the edge of Beacon Hill. We paused in front of the Liberty hotel, admiring the soft light of late afternoon, (ignoring the looks from the posh crowd in the open air hotel bar).

While David now seems to be doing much better, it is important to note that his health issues are complex and many. There is no magic fix to his present situation, and whether or not he will flourish will depend on many factors. While we are relieved that things are looking good right now, we are in no way in the clear. But we welcome every success along this arduous walk towards healing.

Peace and love,

Monika

Nine lives...

One day David is doing great! The next day he crashes and is almost sent to the ICU. Yesterday was a day of worry and calamity, as David started passing massive amounts of blood. He got bag after bag of blood put into his system through his IVs, yet his blood values continued to indicate bleeding. He had an ultrasound and an endoscopy. The ultra-sound showed that the stents were working properly. The endoscopy was meant to establish where the bleeding came from, and since he is on blood thinners, and since he was told months ago that the ulcer would never heal, it was assumed that he now had a bleeding ulcer. Surprise, surprise, the ulcer was completely gone! That was good news. Bad news was that now they had no idea where he was bleeding from. As I left the hospital at 8.30 pm it was with a worried mind and heavy heart.

Fast forward to today, when he is looking great and the doctors are less worried about him. It appears the bleeding may be slowing or stopping, and he can now eat proper food, walk around, see his friends, and best of all; the blood values are getting better and better! So now he is not getting any more blood, and is being carefully watched and measured until all the answers are found. Very scary for us.

Still in the hospital....

David had a scary setback yesterday, when the doctors discovered some bleeding around his liver. This, most likely, is fallout from his Monday procedure. The trouble is that because he is on blood thinners, any bleed could be life theatening, and if they take him off the thinners, hecould form clots in the stent. They put him on rest, gave him 3 units of blood, then watched and treated him all day yesterday, and today things seem stable again. It means, however, that he will remain in the hospital for a while longer, perhaps through the weekend. We are both weary and bone-tired, but cautiously optimistic that he is now on the mend. If friends or relatives plan to visit him around lunch or dinner times, the word is that he is heartily tired of hospital food, and wouldn't mind an occasional tasty meal in its stead. And as always, we welcome your kind thoughts and prayers for a speedy recovery.

Peace and love,

Monika

YES!

The picture above is a scan of the small totem I found on the sidewalk today when Deb and I walked back from lunch, while waiting for David's procedure to take place. After a long day in the hospital waiting room, we found out that the procedure went well. We are SO relieved and happy! When the doctor came out to tell us the news he said that David is "a very brave man". I'm not sure, exactly, what he meant by that, (where there things he didn't tell us about?), but the procedure went well, and that is all that matters. The doctors will keep watch over him tomorrow, and perhaps the next day. We are hoping for continued healing and success!

To all a good night!

Monika

Update

Since his procedure on Wednesday David has been under observation in the hospital. A few complications have arisen, which necessitate another operation tomorrow morning. His stent is blocked by a blood clot, which needs to be removed, and another stent will be added, in order to take some of the pressure off of his portal vein. This should not be as risky as the operation he had on Wednesday. Still, it is not the development we were hoping for, but we are pushing on, and David is hopeful that this will alleviate his symptoms.

We welcome healing thoughts and prayers. We have been, and continue to be, fortified by the love and good wishes of our families and friends. Peace and blessings to all of you.

Monika

Wow!

David went in on Wednesday for his procedure.

Let me just tell you that the week preceding this event was one of the most tense and stressful times of our lives. We had been told that the operation had a 5-10% chance of success, a 90% chance of failure, and a 20% chance of him bleeding out and dying on the operating table.

Before going into surgery David made his wishes clear to the surgeon. "When you get to the point where you feel it's time to quit, just push on through and get the thing done", he said.

Deb and I sat waiting in the waiting room. The doctors had told us the operation would be at least two hours, but could last up to 4-5 hours. After 5 hours had passed and we had no news, I started getting worried, picturing David bleeding out on the table. Then, 5 1/2 hours into it, he came out. The operation had been an unexpected and complete success! The surgeons had achieved all the goals they had hoped for! They dissolved all but a small part of the blood clot, the inserted the stent, opened the portal vein, and the varicies had immediately gone down. It was a moment of pure joy!

To make a long story short, David is spending a few days at Mass General for observation, but is recouperating from this grueling procedure, and getting stronger and better each day. I tell him he certainly has a way of beating the worst odds, and that maybe the next thing he should do is to buy a lottery ticket. The main thing here though is that he is, presently, doing well, in spite of expectations to the contrary. Keep your good wishes, prayers and healing thoughts coming. We are not yet out of the woodworks, and welcome any help we can get. That said, we are deeply grateful for all the love and support we have already received.

Peace and Love,

Monika

Giving it a try...

After the appearance of the clot took my options off the table, we went in and met with the lead interventional radiologist, and based on our discussions and our stressing my willingness to assume risk to try and get a beneficial outcome, he has agreed to try and place a stent in my portal vein, including the area now effected by the clot.

We will do the procedure 11am on Wednesday at MGH, and he estimates a chance of success in only the 5 to 10% range due to the size of the area and the complicated nature of my current real estate. The risk of serious harm to me is much lower in the 20% area, due to the risk of bleeding that I have due to the portal hyper tension... We asked him to be very aggressive and try this even though this is a procedure which normally would not be done.

This is something that I can do, and right now just having something to try gives me comfort, even though the chances of it working are so low...

This will be a pretty standard stent placing procedure where they pass through big arteries around the heart to get near the liver and the portal vein so they can attempt the stent.

It would normally be an out patient procedure, but they reserved a bed for incase they need to keep me in.

We'll try and post the outcome as soon as we can...

Thanks for all the positive thoughts...this week I can really put them toward a specific goal...

xoxo d

Clean Scan, but with a catch...

Yesterday I got another clean CT scan showing no cancer growth. However the same scan shows a clot forming in my portal vein near the original blockage. The team met Tuesday and took the stent off the table as a treatment because of that, leaving me with the previous symptoms intact. We will be meeting with the interventional radiologist soon to discuss this and look for alternatives, but having the ulcer in my gut complicates everything as the blood thinners I would need to treat the clot (or manage the stent) will also cause bleeding of the ulcer... blood flow in that area is already slow so the chances of worse clotting is likely. (this is not a dangerous clot area for lung or brain damage, different system)

So right now things look grim. We will run all this by all our care takers including, each expert at MGH, and my naturopath and then proceed, to see if there is a way out of this mess for me...

Complications...

The repercussions of my illness have been vast. My loved ones and I have been through a lot and have learned allot along the way. Treatments both traditional and alternative have been exhausting, and as new challenges rose up, we have adapted, educated ourselves, made decisions and then attacked with all we have. And happily, we have been largely successful, demonstrated solely by the fact that I am still here counter to all original predictions.

These last couple of months have been a challenge, 1st dealing with the intestinal ulcer and bleeding, which turned out to be just the beginning of a variety of other issues that have emerged just as we were starting to allow thoughts of me having beat this cancer slip into our minds...

It turns out that the location of the original tumor is the cause of all my recent problems. Because it encased a major artery in my gut, it made me inoperable, and now two years later it seems that swelling and scar tissue from the interoperative radiation operation I had last year is constricting the artery and is causing my new problems. The constricted blood flow has caused portal hypertension, meaning a backup of blood and fluids is causing veins in my gut and esophagus to swell to a very large size with the risk of life threatening bleeding. Right now the veins in my esophagus are almost blocking the passage way. I was told by my local GI doctor that my only treatment was to take beta blocker drugs for life that would lower my blood pressure to reduce the risk of bleeding and I had to avoid all physical activity that might raise my blood pressure...No digging in my garden, no carrying anything heavy, no building, no strenuous activity of any kind. As a maker and a teacher this has been a terrible fate to come to terms with. And to make it worse, the drugs cause terrible fatigue, so I have been taking naps all day and can barely teach. These past few weeks have been some of the most challenging of our journey. Really depressing.

We decided to do what we did when I was first diagnosed with this disease: to use all of our powers to find the best people in the field and see if there were any other options that could help or at least ease some of my symptoms so that I could improve my quality of life.

Through my MGH oncologist we met with some liver specialists who discussed my case with the MGH team which includes lots of specialists: my oncologist, surgeon, interventional radiologists, and liver specialists,etc... and we received a call the day they met saying that they think they can put a permanent stent into my portal vein that has the potential to reverse all of these problems.

Things are now moving very quickly. Today I had almost a gallon (8.5 lbs.) of fluid drained from my abdomen (ascites, another side effect), and tomorrow I get another CT scan to make sure that the cancer hasn't returned and to provide a map for the radiologists to figure out how to get the stent in place. (we just had a clean scan in Feb. So we are hopeful that I'll be clear) There are still things that could go wrong or make this not happen, and the procedure will be dangerous due to my issues in that part of my body, but just the fact that the team thinks they can do it and there is a chance to reverse this and give me a more normal life feels like a warm hopeful light has just been turned on inside me.

I'll try and update this page more as things progress...It's been hard to write when there was only darkness...

Today...spring blooms in my garden and also possibilities....

Detour

Basking in the relief of my last clean scan, I looked forward to another three months of staying quietly on task, focusing on diet and supplements until my next scan at the end of April...

Unfortunately, another path unfolded for me.

This past Thursday, I got out of Mass General Hospital after almost a week of difficult drama. It's been a continuation of some internal bleeding issues that had put me into Emerson Hospital two other times during the last few weeks... Last Friday I ended up in the Emerson ICU unit and was eventually transferred to MGH, under the care of my oncology and surgical teams.

It was difficult for my team of doctors to figure out what was causing my bleeding issues, but after MANY tests (including lots of endoscopes), by Tuesday they concluded that it wasn't a return of this cancer I've been struggling with since 2009, and eventually a clear diagnosis and treatment plan came out of that.

Very good news for me! I have a nasty gastric ulcer just inside my duodenum.

I still have a serious condition, but one that can be treated and that I can recover from. I was stable enough to go home, though I still have to work out some medication and treatment issues, and I have to rest and heal some more before I can fully return to school. They believe that a combination of conditions in my body put me at risk for this gastric ulcer; complications of the cancer's involvement with the veins in my gut and subsequent radiation in that area (portal hypertension), as well as the heavy use of advil I've used over the years for my separate chronic back pain. I now need to live with new medications and an understanding of the ways that my body is compromised...

This sickness nonsense has been driving me crazy... and on top of all of it, Monika is in India until Wednesday on a school trip, so my timing was terrible!

I'll be staying home resting and healing for the next week or so before I can go back to work.

Many friends and family members stepped up to help me and to help keep our lives running at the house (the dog and chickens to say the least...) as well as at school, and many others with visits and words of support, so as usual: Thank you.

This has been one of those crazy months, but now I'm home, I'm on the mend, spring is breaking and today I actually feel pretty damn happy...

I don't know why but I'm not complaining...

Scan #3: Clean!

NO CHANGE!!

My oncologist reports that all indications are good. There has been no change in my scans or my tumor markers, indicating no cancer activity. He noted that my news is atypical, as pancreatic cancer usually comes right back without treatment. He says that with each scan I can feel that my odds of survival increase. I'll have my 4th scan at the end of April, marking the 1 year point since the IORT operation. At that point we'll push the scans to every 6 months. After 2 years I can start to feel optimistic, but by the 5 year mark I will be considered cured.

This week I had a fair amount of anticipatory stress as I awaited the appointment. That's a pattern of every scan result. The impending snowstorm increased that stress when I thought I might not make it in due to weather.

It's difficult not to futurize negative outcomes. In this week leading up to today my mind has been playing out how I would deal with the next few days if the news was bad. Would I go to school and start my second semester classes tomorrow? If I have only 6 months to live would I teach? What would I do? Monika brings me back to the reality of the moment, and that the decisions we make are based on the facts we have. For nearly 3 months I run around happily leading an almost normal life, the cancer a minor player in the shadows... then I have a scan and it reminds me that I still live with another reality...

Every clean scan brings me a bit closer to closing this chapter of my life...

scan #3

On Thursday, I get the next CAT scan to measure where I am on this journey. Obviously, I am hoping for the same results as in the past, another clean scan on a path to being declared free from this cancer.

I feel healthy, strong and full of energy, and am hoping that those feelings will be reflected in the scan. I'm trying to just get on with my life and am happily back to my full, busy life...

The worst part of all of this is the not knowing.... running around under an ever present sword of Damocles...

I'll get the scan results on February 2, so check in after that for the results...

Marking Time

The good news is that I have no news to report. I'm marking the passing of the new year quietly, feeling well, with energy and gratitude to family and friends.

Thank you for being interested in my plight, for checking in here, and for sending me good thoughts. I feel that many things have collectively contributed to my still being around to post these notes, not the least of which is all the human energy being expended on my behalf in the form of thoughts, wishes, prayers and actions... hard to quantify, but impossible to deny from where I stand.

Early next week I will get my latest blood test results through my naturopath, and they should inform us about the effects of some changes we've made in my supplements. Basically, we have cut back on some supplements to see if my healthy blood levels are being achieved by taking the supplements or by the healthy state of my body (being cancer free). If the numbers change, we pump back up the supplements... otherwise we follow a maintenance course...

I get my next CAT scan the last week of January, and will get the results from my oncologist on February 3rd. If I continue to have a clean scan, then I will eventually switch to scans every 6 months... cautiously heading toward that magical 5 year date where they stop looking for darkness...

In the meantime, I wish you all a new year full of wisdom and good health...

-D