Brains, Balls, Bunnies and Boylston

We both had a very full day today and it is not over. Orion spent nearly five hours with a nordic psychologist Dr. Davidsdottir getting every corner of his brain pried open for a complete baseline cognitive assessment prior to his six weeks of radiation therapy sometime after Swarthmore Commencement. She says to me, "well, I guess I do not have to tell you that he is highly intelligent and has no learning disabilities". I replied "no, I guess he has that going for him".

While he was solving puzzles I headed out through the Common and down Boylston with the goal of reaching the Back Fens and Fenway, No, not the ballpark but the wetlands, where I hoped I would get a fix of nature. Nope. The Fen is filled with non-native invasive plants, trash and Canada geese. Little else. Sigh. I did enjoy Boylston Avenue with its myriad of human characters and bizarre outfits from drunks, to musicians, to toughs, to drop dead gorgeous women. Here is what I did not see- the elderly. One of my growing irritations with Boston is the condition of the sidewalks. Not one has been suitable for an elderly walker. Bricks are missing, curbs are heaved up, no utility or city worker thinks anything of leaving bolts and open wires growing up out of the sidewalks. Not a place for a walker.

Now as we round out wild meat week we have two choices that we have selected, one for tonight and one for tomorrow during the April 1 snowstorm. Wild Boar Balls or Bunny Sausages. More on those anon.

The photo is of poor hungry Orion after five hours of testing waiting for me to photograph his lunch, The 21st Amendment Burger at the lunch bar across from the State House, appropriately called the 21st Amendment. He says it was fabulous. I celebrated the actual amendment by having a beer.

TUNA!

The king of all fish, the ruler of the Vahalla of fishermen!

That is what Ernest Hemingway called Tuna. I was "into" Papa after reading a delightful book on food and Hemingway. The author went through all of Hemingway's books, writings, columns, and interview and came up with recipes and commentaries on Hemingway's gustatory loves. Yesterday's Lion meal was his recipe. So I came across something he wrote in "The Sun Also Rises", which he wrote in the summer of 1925 in Pamplona. He writes of the comraderie of men in a bar, arms about each other drinking Rioja wine and enjoying Escabeche de Atun, marinated tuna with onions. It sounded so appealing to me I made it for dinner this evening and my good friend, buddy, companion and son Orion enjoyed it with me as we retold the days walk and the running of the Boston autos through the narrow streets and confusing intersections.





I, for one, have been having a wonderful life.

The Mid-Day Walk of Orion Sauter

We had our first splendid spring day here in Boston and I warned Orion that we needed to make a significant effort at walking. He chose to head first to one of the Apple stores, this one at the Galleria Mall in Cambridge. He assured me that he was feeling fine, even though this past week's chemo session had exhausted him and left him five pounds lighter. Off we marched down Temple, turning on to Cambridge and heading for the Charles River. This morning there was a great commotion of emergency vehicles whose cacophony raised me from my bed. Out the window was a TV news helicopter pointing it's camera laden nose at the hospital. I turned on the news to see the very chopper. A T worker had fallen thirty feet down a shaft at the Charles St. Station, breaking both legs. When we reached the station all emergency workers had left but the news crews were milking the story. I loved that the story said that they had taken the injured worker to a local hospital. How much more local could a hospital be than walking across the sidewalk into MGH?

We picked our way across Storrow Drive and on to the Longfellow Bridge. Great views of the city but no birds on the water. None! Reaching the Cambridge side we headed east to the Galleria mall. Pretty bland stuff but I enjoyed handling the new iPad 2 and the Mac Air laptops. Orion shopped for new headphones and had an iced coffee to fortify himself. We struck out along the canal and walked to the science museum where I asked a Statie in dark sunglasses who was as big as a mountain for directions by foot back to Boston. He grinned and laid on his thickest accent. I thought of Alec Baldwin in "the departed".

We crossed the road and walked along the Charlestown shore where the Mystic river mixes in the marshes now largely drained and tamed. This is where the British Warship the Somerset was anchored the night of Paul Revere's ride. We angled and twisted along and finally landed in Little Italy. All along I had been asking Orion his status and watching him carefully. We had now walked more than two and a half miles. He replied that he was fine but fading. Quickly I chose lunch at Antico Forno and we were quickly seated with ice water in our hands.

Orion chose a three course lunch with an Italian beer, I went with my perennial favorite the pizza Margarita, also with beer. Delicious warm bread with oil and olives kept us busy. I delighted in watching him eat.

Back out into the sunshine we headed past Government Center and on to our apartment. More than four miles and now he sits reading. I am happy.

The Importance of Being Earnest

As part of our Hemingway wild game dinner we had Hemingway martinis - Gordon's Gin and Noilly Prat vermouth in a ten to one ratio. Ever the physicist, Orion saw this delightful optical effect.



Another installment in our wild meats week. Yams, French bread, Quinoa salad, and Lion chops. Yes, Lion. It was delicate and slightly sweet but TOUGH and we had no steak knives. Ah well. RIP Papa.

Disneyland it ain't

We were back in the clinic today to have blood work done. A new room for us in pediatric oncology, Disney characters. Orion laughed because I was outraged at the terrible disneyification of Pooh and just as outraged that MGH probably did not get permission to use these images.

The counts came back and once again lots of items high or low but quite impressive considering what he is going through. We go back on Friday for another set. Orion asked, well what can go wrong, whats the worst that could happen? They shrugged and said well we might have to give you a transfusion but that is quick and easy. Everybody left happy and we headed out to Savenor's to select tonight's wild meat.

Rest and Wild Foods Week

Our dinner this evening during rest and recovery week. He was pretty battered this cycle of Etoposide and Ifosmaside. More fatigue and more nausea than previous cycles. So I was looking for some fun and dubbed this wild meats week. We walked through Boston Common today, finding some signs of spring in this colder than average March. Daffodils, crocus, tulip leaves are up. Robins are everywhere. I found a song sparrow and grackles. A few days ago from Orion's room I spied the peregrine falcon pair who nest on the Custom House tower. I also picked off an osprey high above the Hancock Tower. Spring. It is TOO cold and windy so it was a relief to reach Savenors on Charles street, our goal. We pawed over the rattlesnake, lion, boar, squab, elk, kangaroo and god knows what else before settling on the Llama for dinner.

So in the photo are Llama roast, green beans, pilaf, Choyote with caramelized onions and roast red potatoes. Yep, that is how we live!




I have always loved helicopters, starting in the early 1950's when they landed in my housing project yard for rescue operations during Hurricane Diane. So every time I am in Orion's room in Ellison and I hear loud rotor noise I run to the opposite side of the building to see the lifeflights coming in. I am addicted.

Waiting for Release

Orion has finished his fourth chemo cycle, two more to go! If he is well hydrated we should be back in the apartment by 9:30 tonight. He has been very tired and his appetite has been poor. His tumor markers of AFP and HcG have fallen to normal.

Next week is rest and relaxation with a few doctor visits to the clinic for blood work and a special one to have a baseline neuropsychology study done prior to proton therapy which is pencilled in for the end of May after Commencment at Swarthmore.

The Sunbather

Orion and I were tickled by this photograph that I took in the clinic on Tuesday. Those are his black shoe shod feet as he lounges waiting for his blood counts to come back. The room is the one that I have pictured before, a scene on the shore.

But look carefully. What is real and what imagination? There are many delightful surprises. Click the image to make it full size.

The World is Reading

Orion's story is being read in these countries:

United States
Germany
Italy
Singapore
Canada
Jordan
Chile
Russia
United Kingdom
Kenya
Saudi Arabia
Indonesia
France
Australia
Ukraine
South Korea
Czech Republic
Poland
Netherlands
Iran
Vietnam
China
India
Brazil
Morocco
Malaysia
Iran
Mongolia
Romania
Latvia
Dominican Republic
Spain
Turkey
Aruba
Sweden
Serbia
Thailand
Pakistan
Moldova
Costa Rica



All of these readers know Orion or Steve or Sally. He is loved.

Another Day, Another Chemical

I just left Orion in the good hands at MGH for the night. He is in for five days taking chemo cycle number 4, Ifosfamide and Etoposide with some side orders of Mesna. All went well. The Etoposide always causes his blood pressure to drop at first and then his good body seems to say, "ah I know this" and responds, bringing his keel back to plumb. As I left I noted his roommate seems to need a nurse sitting by the bedside. She, Emily, is another skilled and caring nurse so I felt even better. Out in the hall I announced my departure to Orion's assigned nurse, our favorite Karen, and she said, oh, not spending the night with us? A tease. More of this through Saturday with release on Sunday.

Next week is rest and relaxation in the condo on Beacon Hill. Orion is looking forward to "wild meats of the world week", supplied by Savenor's, Julia Child's favorite butcher. I shall be the chef and waiter.

Window to the Soul, er Brain

We had a lovely time back home in Ashfield. Rachel came up from DC on break from law school. Darcy wants to move in with her.



Orion's eyeball! One of the more bizarre symptoms that he had and the one that the MGH doctors loved to check on is Parinaud's syndrome. The tumor compresses the tectum of the midbrain, at the top of the brain stem and prevents Orion's eyes from looking up. Up until a few weeks ago his eyes could go no farther up than dead level. This weekend he said he could, for the first time in six months, see objects in his periphery. A big deal! I asked him to roll his eyes upward and incredibly they moved! With the vanquishing of the tumor all his cranial tissue are rearranging themselves back to normal.

We are back in Boston now in our condo on Beacon Hill. Tomorrow he goes in for his fourth chemo session lasting through the weekend and then we (he) rests and recovers for another two weeks.

The Bill Dwight Show Broadcast

So we heard from many of you that that you enjoyed the live broadcast of Orion and Steve but some of you missed it or were too impatient to get through the first ten minutes of the show before we came on. STICK with it!

http://billdwightshow.com/

The show was called Half Empty + Half Full = Totally Awesome by Jaz Tupelo.

Hamp Hillbillies

We loaded up the Volvo and moved this antique sofa down to the Northampton condo. The sofa was purchased by Orion's great grandfather, Nathan Weltman. We made it in one piece, no one got hurt.

Orion live on The Bill Dwight Show

This Thursday at 8:15 A.M. Orion and I will be guests on The Bill Dwight Show. You can listen live over the internet or catch the podcasts When it goes up later in the day.

Valley Free Radio

Uneventful is Good

All of you blog readers are probably wondering, "Did Steve fall off the edge of the earth? Where is he?" Well, we traded places. He's at home, painting the condo, and I'm here with Orion, not posting. Sorry, but we're happy things are going well and there's not much to say.
I set up a little office in the bedroom so that I could be a telecommuter. I've certainly enjoyed the fast Internet and my new iPhone, AND getting to be with Orion all day, but I miss the face-to-face of office life.
Dinner with Susan Wednesday was a lovely diversion. There's just a comfortable feeling being in a home. And we can always count on a fabulous dessert from Susan. Yum.
In medical news, we had two office visits where blood and history were taken. It was nice for me to meet all the incredible medical staff whom I've been hearing about. Orion walks into the clinic and everyone says hi. He doesn't need to tell anyone his name. Now there's a mixed blessing! Orion's white blood count continues to stay high, and one of the cancer markers has plummeted to "normal". Such good news that we've been released for 11 days until the next chemo cycle. We're headed home this morning!
Our treat to ourselves yesterday was lunch at Toscono's for Boston's Restaurant Week. A lovely meal and great service on Charles St. I offered Orion wine with lunch, but he declined, saying it didn't seem like a good idea just before a blood test.

Orion heads to Michigan

Orion has accepted the offer of a fellowship at the University of Michigan to study theoretical particle physics. All of Ann Arbor awaits his Triumph. Note the haze of excited electrons around him in this old photograph.

Hello from Swarthmore

1) My name is Will, and I am from Swarthmore.

Yesterday, seven of us drove up from Swarthmore to visit Orion in Beantown. Sally referred to us as the Swarthmore Seven: Jen, Julia, Amber, Anne Charlotte, John, Kevin, and me! None of us have seen Orion since January, and suffice it to say that we have missed him.

After our arrival, Steve and Sally treated us all to Whole Foods, which was great fun to pick out of the buffet. Even more exciting was trying to figure out which box belonged to which hungry student when we returned to the apartment. The chaos of eight Swarthmore students filling up on tofu, samosas, and fried chicken is a sight to see.

Today we have given over the daylight hours to playing on the Wii (I trounced them all, no matter what you hear to the contrary) and Orion has been making truffles. We have also managed a walk around Boston to the state house (just up the street), the Common, and the Quincy Market, as well as a visit to Orion's floor on Ellison 18.

Our visit is almost over, but we'll all be sorry to go. It's nice to be together again towards the end of our time at Swarthmore, and our hosts have been most gracious. Boston is a beautiful city, but it's been even better to see Orion, Steve, and Sally.

2) Hello, everyone. This is Jen, Orion's favorite young lady. I haven't confirmed this with him, but it must be true nonetheless (or else someone needs a gentle beatdown). It's been lovely seeing him again, and hearing his snickers instead of seeing his "Heh" on our AIM chats (yes, we still use AIM, outdated as it is). I will miss him bunches. It looks like the next time that we will all get to see him is the final rite of passage: graduation. Scary thought. Many thanks to Steve and Sally for taking such good care of us :)

3) Hello, blog-readers! This is Amber, the one in the photo wearing the grey sweatshirt with a ridiculous rainbow on the front. As I was at home in California over winter break, I hadn't seen Orion since December. I'm so glad to have the chance to come up to Boston and see him. We've all missed his wit, near-encyclopedic knowledge of sci-fi and classic movies, and, of course, his baking. It's good to see him doing so well, and, as Will said, we will be sorry to leave tomorrow.

4) Hi, this is Anne Charlotte now! Everyone else has given a pretty exhaustive description of our weekend here, but I'm going to chime in anyway. I think we've all enjoyed tromping around Boston, visiting Orion's awesome apartment, and flailing at the Wii. But most of all, it's been great to see Orion again! All the other things have been fun, but the highlight of the visit was definitely hanging out with Orion, no matter what we were doing. Like Amber and Will have said, I think we'll all be sad to leave.

5) Kevin here. We hardly thought in December how long it would be before we had another chance to see Orion, and it's been great to spend some time with him today. We hope our odyssey to Boston has cheered him up and not just exhausted him.

6) Hi, this is John. I've been spending most of the day trying very hard not to cough on Orion, with a brief interlude of Wii victory (Will's comments notwithstanding). It's been great to spend some time with Orion. Thanks to him for putting up with all the chaos we brought along with us, and to Steve and Sally for their generous hospitality.

7) Hey, this is Julia! The above writers have recounted most of the events of this weekend, with the exception of my spectacular failure at the Wii (and my lack of tact). We've all had a great time seeing Orion after so many months and having the chance to enjoy his delicious baking. I hope he's enjoyed our visit as much as I know we have, and that we will get to see him again soon!

Swat comes to Beacon Hill

This weekend a group of Orion's friends came up from Swarthmore to visit. He is enjoying it very much. Left to right are Julia, Jen, Orion, Kevin, John, Anne Charlotte, Amber, and Will.

Half Way Through Chemotherapy!

I just gave Orion an injection of Neulasta and so marks the half way point of his chemotherapy. The last time I gave someone a shot was back in 1985 and it was a goat. Pretty much the same thing, neither the goat nor my son complained about Nurse Steve. When the doctors and nurses at MGH asked if I would be up to it I said, sure I have done goats. They looked at me like I was crazy so I asked what is the material difference between a goat and Orion? They were speechless and worried.

The Neulasta stimulates his bone marrow to produce white blood cells. This has worked well so far. I have mentioned it before but the price billed to the insurance company is $3500 for each injection. This morning the UPS overnight delivery guy just left it on the street after buzzing our door.

Dorothy: We melted her! Wizard of Oz: Oh, you liquidated her, eh? Very resourceful!

Okay here we go. Two MRI scans, one from January 18 and one from last night after 2 chemo cycles. Very dramatic results. On the left of these dyptichs is the scan from last night, on the right from January 18th before chemo began. Looking on the right images you can see a central white object. That is the 4 cm. tumor. Additionally, the tumor had spread or disseminated along the midline of the brain, spreading into the ventricles, those reservoirs of cerebrospinal fluid that act as reservoirs and pressure regulators. A bad prognosis!

On the left images you can see that the tumor is gone! Incredible stuff but the best part is that in some of these rare cases there resides a disgusting teratoma, a tumor that is not phased by chemotherapy or radiation. So horrible, Stephen King wrote a novel about one- The Dark Half. Read it if you dare. There does not seem to be one present! So no more surgery!!

So this cancer tumor, malignant, has apparently been destroyed by these awful chemicals. Seems mostly to have been comprised of primitive germ cells, which wandered off track in the first few days of Orion's fetal development. These germ cells are "exquisitely" sensitive to chemo and radiation. So far so good. What little is known of Orion's rare species of cancers is that the full six cycles of chemo MUST be given and the full radiation course must follow.

Cancer is grotesque in that is cellular, hard to see the little bastards. A single cell can escape, wounded from these first washes of carboplatin, etoposide and iphosmaside and return years later, it's vows renewed.

So on he presses using the kind of warfare that I approve of- scorched earth, salted fields, no prisoners. Orion's price? The danger of permanent physical damage to his hearing, his kidneys, his liver, his bladder and the dark possibility of future cancer caused by radiation, like the Curies. Is it love or toxic radiation?

All hail SCIENCE!

I am Made of Poison!

That is what his T shirt says. So true. Today he is in the clinic getting loaded with nasty chemicals. He will be here all day. I will leave him twice I think, once to get lunch for both of us and once to start dinner.

We will review the images from last night's epic MRis -Two hours! In an hour or so, but Dr. Ebb did pop in and say that there was Dramatic improvement. So Orion has that going for him.