Killers

I just got results from my naturopath for the latest blood test I had through him... My natural killer cell levels are rising. They currently stand at 51.4 up from previous tests when they were below 20. This is good news as the higher the number the better, as they play an important role in the immune system... particularly with the attack on mutant cells...

So the supplements seem to be doing their thing... so I stay the course...

Normalcy

I've been trying to get back to a "normal" routine... not a simple task, but something that I'm working toward mentally and physically.

Yesterday I saw my naturapathic doctor to go over the results of my latest blood work and adjust my diet/supplements accordingly. The news were as good as I could have hoped for... all the blood factors that he measures indicates NO ACTIVE CANCER!

He backed off the doses of a few supplements and is testing my natural killer cells to see if he can take me off one of the more expensive supplements. The work now with him is to continue to maintain a healthy climate in my body...

This good news, combined with the last clean scan has allowed me to begin to see a glimmer of light off in the distance. It has been VERY hard to think about having a future much farther out than a year from the present... It's not that I expect to be gone by then; but more of a lingering sense that I should be realistic and live only in the present. A ghost on my shoulder.

I'm amazed at how my mind works... On the way back from the naturapath, comforted by his findings, I found my mind drifting to art projects and ideas that I had casually shelved as I focused on more pressing issues...

Every bit of positive news opens the door of possibilities a little wider...

Thanks for all your continued support. Enjoy Thanksgiving...

Results...

Today we received the results of my recent scan: Clean! No growth of the pancreatic tumor, and no spots showing up anywhere else...

It's the best possible outcome (though ANY other outcome would be the worst possible), and needless to say we are VERY pleased and relieved. The past week has been strange, I've been a bit numb as I awaited today's news, not worried so much as cautious, afraid to be too optimistic in case the worst was revealed...

The mental game is the hardest part of this new life I am leading... I feel healthy, I continue to follow pretty strict dietary and naturopathic practices, so I feel I am doing almost everything I can to fend this off.. but, I am not quite able to believe that I am cured.

So on we go... next scan late January!

Chainlink has been installed...

Yesterday I had my hernia fixed. Wire mesh was put both under and over the tear in my muscle, joined through the hole. I am now home recovering... and re-discovering the postures and sensations of my last operation...only this time the opiates are a little weaker and the pain a fair amount lower (in location).

I was able to put off the surgery till now, allowing me to get my classes to a place where my absence would be more manageable than those tender first few weeks of school.

So I'm putting in lots of sofa time, an ice pack in my lap, Vicodin in my belly and a stack of old Gourmet Magazines that I have been obsessively pouring over... salivating over recipes, 99% of which I can't eat. It's hard to explain, but I get some kind of perverse pleasure by reading about all these rich and currently restricted foods. I need my 5 year survival certificate before I can let some of that stuff slip back into my diet.

That's not to say that we don't eat well. We do. Flavorful, organic, fresh foods, whole grains... I just miss the richness of cheese and cream sauces, not to mention a little beer and wine... at least I don't really crave sugar, that used to be a BIG part of my diet...

My last visit to the Naturopath to discuss my treatment and go over the latest blood work, revealed that my uptake of some vitamins and one blood factor had fallen off a bit. That combined with unpleasant digestive issues I have been having since the operation in March led Dr. Belanger to suggest that my pancreas may not be aiding digestion fully after sustaining damage from radiation, and that I should look into taking a pancreatic enzyme through my primary care doctor. I've been taking that enzyme for 3 weeks with every meal and my digestion has returned to normal... our next meeting in a month will reveal if that was also responsible for the blood level issues.

I feel strongly that the diet and supplements I've been on though Dr Belanger has been key, in combination with conventional care and other approaches, to my still being around.

And I am very happy to have the naturopathic treatments continuing, as it gives me a structure to continue my healing now that conventional medicine has nothing more to offer me.

My next MGH body scan results meeting is scheduled for October 27...

School Starts...

After a quiet July that ended with a clean scan, I stepped into an August that was full of travel and activities... Monika and I spent a weekend in NYC for a friends thesis exhibit, then another weekend near the finger lakes for a photographers' gathering, before heading to NC for a week of friends and image making, then back home for a short camping trip before driving Lucas down to Goucher College... plus a couple of lovely weddings tossed in for good measure... I did more in the past month than I did collectively in the past year and a half...

Now school has started and the exciting routine of teenage chaos mixed with creativity has begun... It feels good to be back at my trade... All the events of the past year and a half have created a lot of grist to expand and inform my teaching.

Next week I'll see my naturapathic doctor to discuss results from recent blood tests and adjust my treatments accordingly. I'm still taking a daily bucketful of supplements so I'm hoping that the blood results show a continued payoff in my healing.

It turns out I have a hernia! For months I thought it was just some residual discomfort from the operation, but it turns out to be a hernia in my groin. October 1st I'll have outpatient surgery to repair it. They tell me I'll miss a week or two of work while I recover. I hope not. So now I have pre-op blood and EKG tests and an x-ray scheduled...

All these things serve to distract me until the end of October when scan #2 is scheduled...

Clean Scan

We met with my oncologist today and the scan looked good! The tumor is unchanged, and there is nothing new.

That is as good as it gets in my world... I feel relief and will stay the course till the next scan in another 3 months. My doctor wants me scanned every 3 months for the first year, then every 6 months after that for another year or so.

Apart from diet, exercise and naturoapathic supplements, I am trying to stay focussed on my mental game... it's difficult to embrace a "normal" life when I know that I am living very close to a precipice. This first clean scan, makes it easier to believe that I might just get through this... That's the plan.

The rest of the summer will be full of travel, picture making and family...

Taking the plunge...

I'll be getting my first scan early next week, and will get the results from my oncologist on Wednesday the 28th.

This will be my first contact with the world of MGH and my cancer team since the operation in March. I've enjoyed being in a sort of limbo, quietly enjoying the summer while having no contact or interactions with the medical world. I knew this first scan would be coming, but was able to keep direct thought of it somewhere off in the ether...

So here's my situation:

A. If the IORT operation was successful in killing all the malignant cells in my tumor AND I didn't have any metastatic cells floating around my body, then I'll have a clean scan and can rest easy for another six months till the next scan.

B. If I had metastatic cells and they have begun to grow in other organs they may show up in the scan. If so, I'll have few treatment options beyond more chemo, and I'll be in big trouble.

I'm hoping that all the work I've been doing with conventional and naturapathic treatments as well as diet and mind/body work will have kept the cancer isolated in my shrinking tumor, that it was killed by the IORT and the scans will bear that out.

They tell me that after 2 years of clean scans I can start to rest easy, and after 5 years they stop looking, since nobody with active pancreatic cancer lives for 5 years...

So this is scan #1...

Summer

The hectic last few weeks of school are over and the summer is here...

My plans are to hang with Monika and the kids as much as possible, to relax, and then make pictures as often as I can. We'll go camping at our favorite spot, take a road trip to NC for a week and a half, and otherwise walk the dog and hang in the garden.

I feel pretty good apart from some issues I'm having with back pain (a 10 yr condition that pre-dates the cancer), so things are pretty stable on the health front.

All eyes look ahead toward a September scan as I continue this process...

Until then I'll keep doing what I've been doing, trying to keep a balance between elements of my old life, and the rigors and self awareness of my "new" life.

Hopefully I won't have much to report as the summer unfolds, I know it's boring from a blog reading point of view, but I must say I cherish the fact that I've had almost nothing going on medically for so long...

Have a great summer!

One year down...

Today I turned 49. Birthdays generally haven't meant very much to me as I've never been bothered about getting older...

But as this is a birthday that I was not predicted to see, I'm happy to report that I'm still here, with no plans to leave. Now I can't take birthdays for granted so this one feels pretty good.

Soon school will be out for the year, and I'm grateful that I can spend the summer hanging with my family, making pictures, and taking a couple of road trips.....

Art making

My energy has pretty much returned to normal levels, and my digestive system, thankfully, is now working pretty well. A recent visit to my Naturopathic doctor reveled that the blood levels which he's been treating with diet and supplements have stayed at desired levels even when I was off supplements and diet during the operation and recovery. He was able to cut my supplements roughly in half, and I am on a maintenance program to keep my levels strong. I was recently sent this link for a TED Talk. It deals with some of the basic approaches that some of my treatments address, it's worth a look:

http://www.ted.com/talks/william_li.html

As the school year is starting to wind down, I decided to bring my wet plate equipment back to school for demonstrations to my advanced classes and to see if making portraits of students was still something that appealed to me. My method of art making is to follow the flow of the work, taking my cues from what I am excited (driven) to explore. Throughout the winter and during treatments and recovery I often thought about what I might do if was able to work again, wondering if the portrait project I had been working on was still relevant. I'm a very different person than I was a year ago, so to test myself, I set up my equipment and started making pictures this week to see if it would click. On the first day, I made a picture a young man named Randolph who had a great afro parted down the middle. I like the picture a lot, and have realized that there is still a lot of work for me to do at school, and a lot more for me to learn, so I'm excited to keep at it.

Back in the game...

Sorry for the delay in new posts... It is a side effect of getting back to most of my old schedule...

I've been back at school teaching for the past 3 weeks, feeling stronger everyday. It feels great to be back at it! At first I rushed home for a 2 hour nap after teaching my classes, but by this week the naps have largely ended and I'm able to spend more time at school working... the timing is good, as this is one of our busiest seasons with large exhibitions, student projects and end of the year tasks fast approaching.

Hopefully I'll be able to bring my wet plate darkroom back to school next week for classroom demos and student portraits... this time last year I made two tintypes of my kids with their prom dates, and was pretty sure those would be the last pictures I would ever make. That was when I was looking at 10-12 months to live... it seems so long ago now, and clearly that's not how this is turning out - so far...

We've been working on getting back to our normal routines, visiting family and friends, cooking: we've suspended the wonderful Monday and Wednesday meals that this magical community has been bringing us all year; I lack the words to express how much the support and love that those meals brought us has helped... THANK YOU.

Since my conventional treatment has largely ended, the only proactive work I can continue is through diet, exercise and work with my naturapathic doctor. The goal is to keep my body's climate hostile to the spread of cancer while boosting my immune system to attack whatever may be left in me... From the beginning my naturapath has had me on a very healthy diet and on LOTS of supplements to boost my immune response while also affecting numerous blood factors that play a role in the spread and growth of cancer cells. ALL of my blood numbers have been improving steadily over the months from unhealthy levels to well below the desired levels, so while it's impossible to quantify what aspects of each of the various the treatments I've done has suppressed the cancer... I feel strongly that this is working... and it also feels good to have more work that I can focus on rather than just sit and wait for a scan in four months.

The hardest part of this phase of my condition is the mental game... I don't know if I have metastatic cancer that is slowly growing in my liver or lungs, OR if my treatments have worked and then the intraoperative radiation killed what was left of my growth and I am already cancer free. I need to get on with my life with the belief (hope) that I will survive, all the while knowing that at least statistically, I am still very likely to die within the next couple of years.

So right now, I'm happily moving forward looking forward to summer family time and projects, pleased to be treatment free, hoping and believing that the statistics have been defied and that I am free, but always with a little shadow of fear and doubt residing in the recesses of my resting mind...

Tenacity...

This this past week was April vacation. I've been starting to pick up my activities more, in the garden, running errands and preparing photography materials. This comes from a combination of feeling stronger and my desire to test my stamina to see if I'm ready to return to teaching... I'm bored being home without the ability to do a lot.

I'm planning to return to teaching tomorrow. Today, we went to a six hour photography conference at Simmons College, which was a good test of my readiness. My classes have been in very good hands, so I know I can return on my terms... and I think it's time. Monika was also acting as a gatekeeper, and she wouldn't ALLOW me to return until she's sure I'm ready.

A couple of days ago, I brought my wet plate set up on the road to try to photograph a magnificent tree in southern NH. With the help of a former student (as Sherpa), I hoped to photograph this tree before the foliage emerges. I've pursued this tree several times with mixed results, but recently I've been feeling the need to revisit it. The tree is about 50 yards into the woods, requiring us to haul the 8x10 camera, darkroom box/cart, gear, chemicals, trays and 10 gallons of water down a slope to the tree. The light turned out to be brighter than the weatherman predicted, so I didn't get the picture I had hoped for... that will have to wait for another day, but it felt good being out working for those 6 hours.

The tree is the very essence of tenacity, brazenly clinging to a cliff with many arm-like roots, seemingly defying gravity. I thought is was the perfect subject for my re-emergence into the world of the "doing".

Slowly building strength...

I feel pretty good. My wound is largely healed, it had been weeping fluid since I had the staples out, but it seems to be closing up nicely as of today. The pain is minimal, and easily controlled by advil and tylenol. My diet is back to my pre-surgery healthiness... today I started back up on my supplement regime... a hundred pills a day! I wish I could leave them behind, but I think they have played a major role in getting me to this place so I know I need to stay the course. I'll meet again with my naturalpathic doctor in a couple of weeks and see if I can modify the amount of supplements I take. Also, at $1000 a month I'd like to ease off financially also!

My biggest issue is fatigue. I get tired very easily. Because I otherwise feel good, it's very frustrating to be so weak and tired. I know that my body's been through a lot; between the operation and the high dose of radiation I have a lot of healing to do...

So my days consist of small activities followed closely by a nap with supplements and meals woven in... I was hoping I would be well enough to be back at school after April vacation next week, but only time will tell. In my current state I'd be napping by second period...

Todays big activities consisted of a short walk with Monika and the dog (resting at the halfway point), and I planted peas and salad green seeds in the garden beds that friends prepared over the weekend...

Down the road...

Well I'm home resting and am fully engaged in a slow heal...

I got home last Tuesday, and by the weekend I was able to wean off the opiates (goodbye visions) and am now pretty comfortable on Tylenol and Advil. It will be a while yet, I think, until my body gets back to a solid place. Everything is working, and I'm on the mend but I feel fragile. I'm slowly getting back to my previous healthy diet as my digestive system finds it's legs ... so to speak. I got my staples removed this Tuesday, all is well with my 7" wound... I have a pretty sweet scar in the works. My world right now consists of lots of naps, and not much of an attention span so my days include a lot of sitting in the garden watching the nuthatches that have moved into one of our birdhouses. I'm relying on the labor of friends to wake up the garden this spring, turning beds, getting compost and moving things around... soon I can start putting in seeds and seedlings... those who want to visit are welcome to stop by...

This operation represents the end of my treatments. Once my body heals from the operation, I will return to teaching, art; my regular life... sort of. I will try to continue to live in the healthy, present, conscious way that I have adopted during this illness. Every six months from here on out I will get a CT scan to see if cancer is growing anywhere else in my body. If it pops up, I'll have limited options and not too much time... My radiologist and surgeon said I have a 6 percent chance of a cure, and that if the cancer returns it is almost always in a place other than the site of the tumor because the IORT almost always kills the tumor. If all the work I've been doing with diet and supplements with my naturalpathic doctor has been working as well as it seems, (the fact that I even got to the IORT was a long shot), then I think I may have better odds than I've been given... They say that if I get clean scans for 2 years I can start to feel hopeful, and after 5 years I'd be considered cured...

So now I have the odd task of trying to move forward with my life, all the while knowing that I may still have limited time, and that if I am cured, I won't feel free for years...

It leaves me with lots to ponder as I sit here healing everyday...

Visions/Home

Hospital time is very slow. Because of regular checks, prods and procedures, I was interrupted often and it's really hard to sleep as streams of nurses, various doctors and residents make their way though. You lay out of time, in a daze. I was very lucky and had a roommate from VT, who had had a whipple operation by Dr Fernandez. Having a thoughtful and kind man with a related experience in the next bed, made my journey much easier.

The surgery had cut deep into my abdomen; and my skilled team of doctors did the job in just over 2 hours. Amazing!

The healing takes a LOT longer.

My surgeon, Dr Carlos Fernandez-del Castillo gave me a great report and a detailed account of the procedure... the highlight being that it was the best possible outcome: they found the tumor much smaller than they expected (a 2cm shriveled prune like growth) and in an excellent position to be radiated through a small cone. Everything else went well, and now only time will tell...

I'll discuss my thoughts on that in the next post...

By Tuesday, my pain management involved eating 8mg of dilaudid every 3 or 4 hours...leaving me pain free as long as my midriff didn't move in any direction...any move would result in jabs of pain that were uncomfortable but manageable...more drugs would numb all pain, but the narcotic effect would be unworkable...

As it was, by Monday night I was having pretty wild hallucinations... they persisted until today when I was able to reduce my dose by about a third...

After I got home and took my next round of medication, I rested while Monika made some food. Among the many strange things that came my way... I saw Deb's dog Buddy laying on the floor near me (he died March 2), but instead of his flowing golden fur, it was replaced with the iridescent red and brown feather plumage of our rooster... that was some look!

When I closed my eyes, I saw an awkward, young amateur Jewish comedian who wanted to put on an act for me. With his fro and unbuttoned print shirt and chains, he implored me to watch but I didn't want to, so I opened my eyes to get rid of the vision...when I closed them to check, he was still there so I opened my eyes again, but this time just he disappeared, the background around him stayed in my sight with just a cutout of his shape missing... eventually I was able to avoid the show.

Trust me it ain't easy being sick... you should have seen that shirt!

I'm so happy to be home...

Groggy, but on my way home...

I'm going home today!!!

Probably by early afternoon, my dad will come get me, pick up tons of my pain meds and drive me home. I'm on heavy opiates, and my stomach area is really tender even when I'm drugged. I'm groggy and can hallucinate just by closing my eyes... "on demand"

I'll post more when I start to get more comfortable and coherent, and when I'm ready for visits at home... It will take me a while to figure stuff out around comfort, diet, sleeping etc...

I'm looking at about 10 days of pain and heavy medications before things get incrementally easier...

HOME!!!!

Zapped - then zipped...

This is what David's new bling looks like! As Dave proudly showed it off to his sister's family yesterday, the sight of it made his niece faint. She was promptly brought down to the emergency room, where it was determined she was fine.

Yesterday morning Dave's epidural also started to act up, so he had another struggle with Pain, his old nemesis. After that it was pretty smooth all day, and he is getting closer to his old self by the hour. His corner of the hospital room is starting to look like a flower shop! Sweet smells and beautiful colors that remind us of spring!

This morning when I spoke with him he was starting to eat solid food. Dry toast never tasted so good.... He is also starting to peruse seed catalogues, with plans for the garden, and he now wants me to bring him his laptop so that he can resume his reading of blogs and news. This is a great sign, since he felt too weak to do any of that before. The docs are beginning to wean him off intravenous painkillers. Hopefully this will go smoothly.

There are too many of you to thank individually, for the unflagging kindness, love and generosity extended to us by our network of family, friends and kind strangers. You have supported us through these most difficult months of our lives, and many were the times when the solace and strength from all of you was the only thing that kept us from falling apart. You are all in my thoughts, and my heart is full of gratitude.

Peace and love,

Monika

Doing well, but tired and aching....

Dave spent the morning battling severe pains, since his epidural had been placed about three inches too low. And once the spiral of pain had started, it took quite an arsenal of medications to get it under control. By noon, however, he was beginning to feel fine, he managed to sit up in a straight-backed chair, and even walk a lapse around the ward. While he is progressing nicely, there are at times severe relapses of pain, and since he sleeps poorly he is prone to dozing off without warning. Due to these factors he feels it would be best to hold off on visiting him at the hospital, and instead wait until he is at home. That said, he is already turning into his old self, making jokes with the nurses, and befriending his fellow patient.

A decent night and one less tube

Dave had a relatively good night and called a bit ago sounding like the Dave we know and love. They took a tube out of his nose but he remains on an epidural for more time. He isn't ready for visitors or to answer any emails but we will let you know when he is. I'm printing out your posts to send to the hospital. Thanks! Deb

SUCCESS!!!

Deb here, just back from the hospital where I saw Dave in the recovery room along with his Dad and Monika. Here's the scoop:

Dave's surgery was a success. He got operated on at around 9 this morning and the doctor called Monika and said that everything went perfectly...the gallbladder is out, meaning he doesn't need a stent anymore, the tumor had grown very small, and the radiation went well. All things went perfectly!

Dave will be in the hospital for about 5-6 days. He does not have his computer yet but we will bring it to him when he is feeling ready for it.

He was dopily delighted to hear the good news from Monika and is going to go to his room within the hour.

Send all good wishes here and they will be relayed to Dave. Thanks to everyone for the good thoughts, prayers, and energy sent to the Prifti househould this week. We will keep you posted! Debora

Finally...

I't's the day before Friday's operation. I have regained my focus and am eager to enter this last big phase of my treatment.

I'm taking this day to rest, be mindful, and spend time with Monika. We'll probably play scrabble (I'll lose), then walk the dog in the woods. I'll go to yoga one last time for a while, then we'll have a simple meal and be early to bed.

Tomorrow I get there at 6 am to be prepped for the 8 am operation. Unless they find bad things and the operation ends fast, I should be done before 11. I will be staying at MGH for 5 days, before I get plopped on the sofa at home like a skinny version of Jabba the Hut for a few more weeks of healing.

There is so much riding on this procedure that it forces me to be reflective of the entire arc of my illness over the past 10 months. Apart from the difficulty of the treatments and the upheaval of our daily lives, I am certainly not the same person I was back in May; before I dropped 25 % of my old body with a healthy diet, and cast off probably another 50% of my old mind, attitudes and approach to life. This part of the illness has been a blessing, and leaves me with a model for how I hope to keep living if I'm able to get past this disease. I have shed a LOT of my old self, and am living a much more paced, appreciative and present life.

I'm SO ready to finally get this operation done...

We will try and get information on how it went, room info, etc... posted tomorrow night...

Thank You for all the supportive thoughts!

New Stent

I spent Thursday at MGH getting my stent replaced. It was successful. The doctor said it went very smoothly, taking a total of about seven minutes to complete. The other 5 hours I spent there consisted mostly of me laying in a pre-op bed waiting for my doctors to finish a much more difficult and time consuming procedure before they got to me.

Spending so long sitting in the ward, watching the constant flow of patients being brought in, prepped, and sent out for their procedures, reinforced the positive feelings I've had about all the care I've gotten at Mass General. In almost a year of weekly (sometimes daily) interactions at MGH, I have not had a single negative experience. The nurses across the board have been skillful and thoughtful, and the layers of oversight and professionalism on display has been impressive.

The thing that bothers me the most is being stuck with needles. Every visit requires at least one or two blood tests or IV's being set. I disliked needles before I got this illness, and it has now grown to dread and loathing. Yesterday I got hit three times...

On March 26th, I'll finally get the intraoperative radiation operation. I have two weeks to strengthen myself physically and mentally, and, hopefully, two weeks without needles...

Never a dull moment...

Now that the operation was postponed, the statute of limitations has run out on the temporary stent that I have in my bile duct. They last for 3 months, and the old one ran out last week, which is why we originally had the operation scheduled for the 3rd.

Monday, I started to have steady abdominal pain in my stent area, and was sent in for blood tests. I will have the stent replaced at MGH on Thursday afternoon. In the meantime, I'm home pumped up on pain meds... Money poorly spent by BCBS for a procedure that the operation would have made irrelevant.

Last week was disappointing. It was a difficult emotional transition to shift from the focused optimism I was carrying into the surgery, to the shock of the loss of coverage and cancellation of the surgery. I have quickly re-focused my concentration on the 26th and have been bolstered tremendously by the out pouring of support by my people in my time of need. When I realized that we could have raised all the money for the operation through the generosity of our family and friends, it took my breath away and allowed me to look past the set back, and ahead again to the operation. I felt like George Bailey at the end of "It's a Wonderful Life"...very rich in every way. And the fact that Monika's appeal was successful, and I won't need to tap that support is even better.

We are blessed to live in such a community as this, and to have you all in our lives. THANK YOU for your continued support.

I doubt I'd still be in this without you all behind me...

Things are breaking our way...

We just got a call from Blue Cross stating that they have reversed their decision and will now pay for the procedure!

It is as if we are finally able to let out a breath that we've been holding for three days... we are so relieved...

My Doctors had appealed again on March 3rd and their request was rejected. Monika then spent 14 hours on Wednesday compiling data, talking to doctors, insurance representatives, and then writing an impressive appeal. It seems to have done the trick!

Yesterday, we also re-scheduled the operation for March 26, so now I have a date to re-focus on, without the stress of how we would fund the $100,000 operation.

So many friends near and far have come forward with offers of time and treasure to get us through this; we are truly humbled by all of your love and support.

THANK YOU!

Update...

Today was a difficult day. We are still reeling from the last minute cancelation of the operation, and the uncertainty of what happens next.

Blue Cross/Blue Shield rejected my claim, and Monika has been spending the day compiling data and studies supplied by my doctors, and is writing a comprehensive appeal as we begin to fight this. Monika was told by BC/BS that this procedure is not considered effective, but we have learned that it was covered until October 2009 when they changed their policies.

After much discussion, we have instructed my doctors to reschedule the operation as soon as possible. They said it would be in April, but there is a chance that March 26th may work; so we are waiting for final word on the date. We decided to go forward even if all our appeals fail, because this represents my only/best chance to get cured of this disease.

We will cross the bridge of fund raising only if we have no alternative. I am deeply troubled by the thought of imposing on family, friends and community. Hopefully the coverage will come through...

Yesterday, as the denial of coverage and cancellation of the operation unfolded, Buddy, the 15 year old dog that lives with us (with our friend Deb) began to fail rapidly and died peacefully with Deb last night. He had a great life and was very old and fragile, but his passing added to an already surreal and stressful day.

Now I need to regroup and regain focus as my next goal gets pushed out a bit. I thought I would be in a hospital room by now, beginning my recovery from the operation, but instead I have to wait, and focus on strengthening my body and mind, and keep eating brussels sprouts and yams and taking tons of supplements.

I will post information on the appeals as I get more information.

Thank you for all your support and kind words...

Cancelled

I am NOT having the operation tomorrow.

At midday today, I got a call from my radiologist that Blue Cross would not cover my operation. We spent the afternoon working with the doctors to try and get through an emergency appeal, but they couldn't make it happen in time for Wednesday.

The out of pocket cost to us would be in the hundreds of thousands of dollars so we need to get the coverage approved first. My surgeon said he has done 120 of these and they've all been covered, so we are all very frustrated.

We will go forward with the appeals process and hopefully reschedule soon.

Needless to say we are not happy, but this is the situation, so now we deal with it...

The mellow before the storm...

It seems odd to me, but I feel quite calm and peaceful as I wait for Wednesday's operation. I've been expecting sleepless nights and stress in my body, but so far I feel good, serene, really. I'm sleeping well... mundane dreams. Today I cleaned my studio and did restorative yoga. On Monday I'll teach and get reiki at school, then after school I have a pre-op meeting at MGH to go over the procedure, medications, medical proxies, living wills, etc...

Tuesday will be a quiet day with Amanda, hopefully a long walk with her and the dog, then acupuncture and a simple meal with Monika and Amanda.

My operation is first thing in the morning on Wednesday (6 am), which suits me just fine as I want to get on with it without all the waiting that often happens at hospitals. The operation should last around 2 or so hours, then I'll be 5 days at MGH before I get home.

During this past 9 months I've come to understand that if I do EVERYTHING I can to overcome this cancer, and it doesn't work, then I can face the last hurdle at least knowing that I did my best. Right now I feel happy, strong and focused. Since I don't feel sick, it's hard to feel like I have a terminal disease. I take the cue from my body, so I'm optimistic about the chances of this operation working. If it doesn't, I'll cross that bridge when I get to it.

We will try and have Deb make a post on Wednesday night or Thursday to give an update on how it goes, room info etc...

Looking ahead...

We met with my surgeon Tuesday at MGH and discussed the upcoming procedure... I'll be getting intraoperative radiation on March 3. The tumor is down to about an inch, and will allow them to put a cone onto it that will expose the entire growth to radiation, but spare surrounding tissue. If they don't find any metastasized cancer in other places as they go in, then they will remove my gallbladder and do some other plumbing related work, then zap the tumor directly for 1.5 minutes. The location of the growth in relation to the arteries in my gut make the removal of the tumor impossible, so there is no option for the whipple technique.

I will be in the hospital for about 5 days, then home recovering for another 3-6 weeks.

This procedure has a chance of killing ALL the cancer cells in the tumor, and represents a curative possibility for me. The surgeon told us that there is about a 6% chance of cure for people in my situation who are able to get this procedure. Considering the fact that the growth has been shrinking, we are hoping that any cancer cells floating free in my body have been killed by chemo and all the other work I've been doing, and that this gives me a solid chance to get out of this chapter of my life alive...

One disquieting fact is that this procedure represents the last operative or radiation procedure open to me through conventional medicine. If the cancer persists, my only options would be palliative chemo treatments to give me comfort and extend my days.

It's been almost 9 months since this odyssey began, and all my work has been to get to the next treatment option without having any doors to treatment close. It's a strange feeling to be at a place where my options have become finite, with the outcome still undetermined.

When I was diagnosed, I knew it was unlikely that I would ever get to this procedure, as my prospects were not good. The numbers suggested that I would die by this May or June. I wish I could just jump ahead 12 more months to see if I'm in the clear, but I know that the outcome to this journey may reveal itself in slow time, with my efforts having to continue into an uncertain future. I am pleased and grateful to be at this place, and am really looking forward to getting this done!

I have a week to get my classes prepared for my absence, and if things go well, I will be back to my old life by mid April, with plenty of time to teach, start spring seeds and plant the fruit trees I ordered a few months ago...

Some light at the end of the tunnel...

Some good news today.

We met with my medical team to go over the latest scan, and the tumor has shrunk a bit smaller and is stable (not spreading). My radiologist said that it seems to have shrunk off one of the veins, but not yet enough for the whipple operation. I am eligible for intra-operative radiation, which involves an operation that cuts down to the tumor and then uses a protective cone to apply lots of radiation right onto the tumor without doing much damage to surrounding tissue. Several approaches/outcomes are possible; 1. They go in and radiate the tumor for 1.5 minutes and try to kill all of the cancer cells. 2. They go in and see that the tumor is smaller than they thought and will go ahead and do the whipple procedure to remove the tumor and surrounding tissue on the spot. 3. They go in and see cancer in other organs, and stop attempting the procedure because the cancer has spread and containment is not possible.

Sometimes, the cancer can be killed completely by the intra-operative radiation and if there is no other cancer in the body; it is cured... leaving only dead scar tissue.

This is what we hope for...

I am meeting with the surgeon on Tuesday and the operation will be scheduled ASAP.

In the meantime, I continue all the diet, supplements and alternative care work that has helped to get me here...

- David.

The drawing above was done by an old friend during the first week of my diagnosis. He did a bunch of drawings showing the cancer being purged or exploded from my body... it wasn't until we later learned about the intra-operative radiation procedure that we realized how similar his drawing is to where we ended up... He's going home tonight to do a bunch of drawings of me as an old man...

Normalcy

These weeks off are rejuvenating. I'm getting lots of rest and am able to teach without interruption. Today was the start of second semester classes, and I really enjoy these first days with new students. I do lament the fact that my best case scenario medically would be an operation that would likely keep me out of school for the rest of the year. Obviously I hope for that very thing, but I would miss the classroom. I draw LOTS of energy from students...

The fact that I don't feel sick right now, gives me some comfort. My doctors have told me that if the cancer is spreading, I should feel quite bad. So we all take this as a good sign.

I had a dream a week or so ago that I was lying down, feeling connected to the whole universe, and that a powerful white light was beaming into my abdomen, bathing me in bliss. I revelled in it until I was woken up by the sounds of Buddy struggling to stand (he's an old dog that lives with with us and has trouble standing up on wood floors). I went down and helped Buddy onto his dog bed then ran and dove back into bed trying to return to the dream. It was gone, but I vividly remember the feelings and sensations...

I'm taking it as an sign...

-D

Resting and Waiting

It's been a week since I ended the last round of treatments, and I'm slowly getting my strength and energy back. I've been sleeping a lot and I have a little more energy each day. Today I started back up with yoga classes; I've been feeling as limber as a bag of cement.

The Feng Shui Master came back last week. After learning that my scan from a month ago was good, he said he needed to follow up on his previous visits to do some new things to heal me. He is a complete mystery. The Master drives up in a big Mercedes, sports an Elvis like bouffant and a Chinese leisure suit, and uses i-phone apps to make his ancient calculations. This time he checked on the site of the animal ghost ceremony that he did the last time, making sure it was still fenced off from any human or animal contact. He also inspected all the other things he told us to do (most of which we did). He speaks no English, but says very little anyway, and explains almost nothing of the what's or why's of his actions.

This weeks action involved him making an alchemical mixture of various colored powders, mixing in some water, painting it on a large brass Chinese coin which, after a ceremony involving fire, bells, and numerous incomprehensible incantations, ended by me hanging the coin in the carefully chosen and measured spot on the wall, and then my carrying a laminated packet of something on my person and wearing a blessed jade and gold dragon necklace... I'm starting to feel like a Chinese Liberace... all in the name of healing...and fun.

February 11 is my next goal. It's the big day when I get the latest scan back and meet with my "team" to chart the next path...

This illness has changed the nature of "goals" for me. I used to think about long and short term goals; like what I'd like to accomplish in the next couple of years, and then 10 years and on retirement plans... Plans based on the illusion of unlimited time.

Now my goals are much closer to home... timed to help me make it through the next treatment, or through the few days it takes until a test or scan result comes in. These goals keep me much more focused in the moment, and consequently I feel more present and focused on each day. Grateful, really. (Scared, but grateful)

So February 11th is my current goal.

-D

Letting it do it's thing

Well, I made it through this round of radiation and chemo, and now have a few weeks rest from any treatments while the radiation continues to kills the cancer cells that have been damaged by those powerful, healing beams. I can get back to work helping my body recover, building up my strength and energy. And I can start up yoga and exercise again!

I will not miss driving in to MGH everyday, the hardest part for me has been sitting in the waiting room full of so many suffering people. It's a quiet, sad place... I felt like I didn't belong there, even though my prognosis is probably much worse than most of the people in the place... Ironic I know. It reminded me of a Bruegel or Bosch painting of the gates of hell. I got in and out as fast as I could, even though the people working there were very kind.

On February 9th I'll get new scans, and then on the 11th we'll meet with my medical team to see what happened, and decide what happens next...