Jet Lag

The CLL-Patient Advocacy Group (CLL-PAG) meeting in Niagara Falls was a busy, emotional,and informative three days.

I am still recovering from the stress of travel, but I will review the content and the texture of the meeting soon, including my performance as the comic leukemic.

If you wonder why the last post was so much longer than this one, that's because it was written on the long plane flights home.

Dr. Forman April 16, 2009, my diet and supplements, and my comedy routine in Niagara Falls

Much to share:

Let me start with my appointment with Dr. Forman last week.

All my lab remains normal and I have no evidence from lab tests of the dangerous post transplant lympho-proliferative disorder (PTLD). No active EBV in my blood to be found.

My B cells are only about 1% of my lymphs and my T cells are normal with healthy CD4/CD8 ratios.

I am realizing that my doctors’ appointments are become less important, less dramatic, and less frequent. And I don’t post on them, as I walk out the door.

Maybe the rest of my life is just getting busier.

I don’t see my doctor for over 2 months now.

The question is no longer whether my nodes have grown or not. My radiologist friend from France is the latest doctor to confirm the growth. My mesenteric nodes are more bulky. The rest are stable. That’s undeniable now. Four different readings: one conclusion. They're bigger.

What does it mean?

There is still some question as to whether the growth is a sign of relapse though I would say if they shrink it was a sign of remission. Either way I would be happy.

Biopsy is way too dangerous and really an overreaction.

So the question is when to repeat the scan. The range of medical advice is from 3 months to until there is a clear indication.

I am thinking the middle road. No need to rush into a life threatening second transplant, but you don’t want to wait too long, when the disease may be harder to control, bulky or worse yet, undergone clonal evolution. 

6-12 months makes sense. That's Dr. Forman's plan. A minimum of once a year. CT is cancelled for June.

I suspect this is all moot. The disease will decide. I doubt I will grow massive gut nodes without something popping up somewhere else or my lab showing subtle signs of recurrence.

The real question is what to do about the growing nodes seen only on CT scan. Do we jump it and hit the cancer when the tumor burden is low? Bexxar to deliver a toxic radioactive payload to my nodes while my bone marrow is clean? That might make sense. The NK study to immunologically mop up the remains of the Amalakites?  Revlimid to increase the immune surveillance? 

I am revisiting old battlefields in my head.

Dr Rai says let someone else worry about your nodes. He says my loss of the graft is bad news, but not a death sentence. He says specifically no Bexxar or Revlimid.

He says I have gotten quite well, and done it while staying remarkably unscathed from treatment. And the next steps could be most dangerous and I may not miss the minefields a second time.

So best to just forget about it.

Or try something different. If they are all gut nodes, let me target the gut. For me that means the organic vegan low glycemic index diet. To you that means raw green vegies and raw nuts and seeds. Oh, they can be dehydrated or blended or juiced, but that’s about it.

This diet is nearly impossible when you travel (although Toronto had a great raw restaurant-LIVE- check it out), and hard when you are at home. You spend a lot of time chewing. You spend a lot of time eating. And what goes in, come out, so you spend a lot of time indisposed.  The term bulky does not only refer to lymph nodes.

Let me be clear there is no evidence that it works. In fact, on a similar diet, my CLL got worse about 2 years ago. This time I am stricter and avoiding the sugars in fruits and carrots and beets.  It is based on the rainbow green cuisine writings of Dr Gabriel Cousens.

It is pretty far out.

People ask me how I can stay on this diet.

One: It’s delish

Two: It’s healthy

Three: I am fighting for my life

Four: I’m no saint, I cheat a little

Five: When I am cured, or if there if no benefit, I will definitely loosen up.

While on that strict diet, I continue with my zinc and Vitamin D3 (6000 IU) a day unless I walk shirtless on the beach). I still drink three pots of organic Japanese green tea, and I have added vegetable source digestive enzymes and an organic source of Vitamin C. And I thought adding 2 Teavigo green tea extract with all that EGCG might make the nodes a bit less hospitable for my cancer bad boys.

Add to those 1-2 tablespoons of organic cold pressed flaxseed oil (fancy linseed oil commonly used to thin paints) and EFA (Essential Fatty acids) and vitamin mix that are part of the Budwig diet. Check it out.

Further out you say.

I am not done yet.

I am even considering (all my hard core medical readers are running for the doors now) the infamous “detoxifying” Zeolite of MLM (multi-level marketing) disgrace, though I see no reason not to buy the cheapest stuff I can find. This MLM stuff is pretty nasty and turns be off the whole business,  and it smells of pseudo-science to me, but MDs I respect have recommended it.

Remember, none of this is of any proven value (except the green tea),

The good news is that also none of this is too pricey (well maybe the Zeolite), and all of it pretty healthy and safe.

So when my next CT shows my guts nodes have shrunk, my doctors will say: See Brian, you worried for nothing. But you and I will know that it was my diet and supplements that righted the ship.

And if those nodes, and this is most unlikely, have grown, I am not going to eat a steak, or even a smoked meat sandwich, but I might order some sushi or have a thick wedge of sharp cheddar cheese on a piece of home baked apple pie. Organic, of course.

Have you lost all respect for me, my hard nosed colleagues? Remember I am the one who tried and rejected Chinese medicine when it did not work, and embraced the most aggressive intervention in Western medicine: a stem cell transplant. The jury is still out on that, but it sure benefited  much more than all my alternative treatments.

But I am still looking, refining, guessing, experimenting, and trying not to be stupid.

Last thing:

The CLL-PAG conference at Niagara Falls was very special. More later. I did my comedy routine.  I won't be self-deprecating. I killed them. It was a smashing success. It helps that I had such a generous and kind hearted audience. And they all had CLl, or doctored or cared for someone with CLL.

I had such fun. Little is better in life than making people laugh at their predicament. Except maybe making their doctors laugh at themselves.

Niagara CLL-PAG Conference

Comedy went well. You might say I slayed them.

The conference was above and beyond.

Then into the eye of the storm for a cleansing experience on the Maid of the Mist.

More later when I am back in town.

Moving on

Thanks  for all the wonderful  notes, cards, and emails about Miriam.

It deeply helped me and my family through a rough time.

Now I am working on a comic speech on leukemia for the Leukemia and Lymphoma Conference in Niagara Falls.

As usual I have left things to the last moment, and  no surprise here: It is not easy to be funny about cancer.

But it is possible.

I feel a bit schitzy as I am torn between trying to go for the patients' and doctors' heart and teach others what I have learned, and trying to go for the audience's funny bones and have some fun at my own expense. And while I'm at it, throw a few good natured barbs at the CLL experts.

Well, back to work.

Good and Bad

My son, Ben graduated from Art Center of Design, Pasadena yesterday with a BFA. His major was film directing. Even, if I am his Dad, I can say he's one creative, hard working kid. We are very happy and very proud.

When we got back to our house, Miriam, our old sick dog, was extremely lethargic and could hardly walk without her legs slipping out from under her. She was not interested in food or water. Her breathing was labored, and she soon was struggling to just lift her head. After a family conference, we took her to the vet to put her down. She died with 4 of us around her. Very peaceful. We are very sad. She was a good dog.

The family's emotion have been whipped around.

Walking against the Wind

The sand on the beach on Balboa Peninsula recalled snow drifts in Morin Heights, Quebec almost 40 years ago, and although the strong cold wind had a bite, its teeth were not the sharp canines that had cut through my flesh in a Laurentian blizzard.

Walking against the wind seems cleansing. Good to do, but tough.

Miriam, our sickly dog, seems brighter today. Her cancer can behave like that. Ups and down. Barry B. (see comment) suggested modified citrus pectin (MCP), and there are a few studies that look promising.  It may slow the growth of the cancer. So might the NSAI she is taking for pain. Not a cure.

I will pick the MCP up tomorrow. Thank you Barry for the tip.

Me? I too have my  ups and down. The imminent possible return to work is forcing me to reflect on what's been lost and gained over the last year. It will be a major shifting of gears, done before my masterpiece is painted and my  great Canadian/American novel is on top of the NYT bestsellers list.

Transitions are always tough.

Tomorrow I see Dr. Forman. Another chance to take measure of my progress. Now that's a word that cuts both way for those of us with cancer.

I better lighten up before Niagara Falls.

Yesterday my wife and I spend a wonderful afternoon with friends that I had not seen in 22 years. Fellow Canadians. We lived nearby in Claremont, and then they followed their dream to Hawaii. It had a lot to do with surfing. I even learned to surf from this old friend in my 30s.

It was so sweet to see how they had so fully self actualized, had lived the life they wanted. It was wonderful to see how gracefully they had slipped into "retirement". Much to learn. It felt good to reconnect.

Walking the dog

Miriam, our faithful companion since we rescued her as a young adult 14 years ago, has not been walking well for the last few days.

Today we found out why. She has an aggressive cancer: hemiangiosarcoma. 

The prognosis is grim and rapid.  Her age, kidney disease, and anemia don't help. Treatment is usually futile.

We are devastated.

She remains cheerful, though more lethargic.

She is an old dog, very much loved. 

I can't say anymore without losing my composure. Funny how much an old dog can touch your heart.

Walking- Zazen

I drove the 45 miles to the  Rinzi-Ji Zen Center, got out of the car, and within less than a minute was walking Zazen (in meditation), arms folded in front, in silence, lock step with the monks and the guests, repeatedly transversing the same path through the yard of the center, then sitting in the Zendo, then walking more, about an hour in total. 

Talk about downshifting.

Excellent, but my monkey brain didn't shut up most of the time. 

Teisho (Zen teaching) by the 102 year old master lasted well over an hour. He sat on his elevated throne, lotus position, like a stone, while I needed to shift my position to comfort my arthritic knees several times. He talked about his coming to the USA as a Japanese citizen and the obstacles and discrimination he overcame and the support he received. It was wonderful to hear the strength of his voice and the Zen twists of his mind so brightly illuminated as he tried to nudge us forward, towards enlightenment, I guess. 

I have a long way to go.

Miracles

I am back.

My hard drive was busting at the seams with 119 of 120 Gigabytes full. So I transplanted a new 32o gig HD into my Macbook.

 

Don't fret. The old drive has a home too. It will soon be safely ensconced in a firewire case, so it can continue its life as a bootable external drive, forever ready to bring me back to April 11, 2009, at least in my digital world.

Another ending today. The LA King's season.  I pride myself on being a good foul weather friend. Someone you can count on when things aren't going your way. But it is getting hard to root for a team that hasn't made the playoffs in 6 years. I love hockey, but I hate losing.

Something to look forward to: Tom Robbin's new book: B is for Beer will be launched before the end of the month. Knowing how he writes,  launched is probably a good choice of words. I am anticipating a wild white water trip with previously unknown landmarks that will soon be part of my psychic landscape and making some new imaginary friends on the way.

Which I did in the plane. Not imaginary, that is. A wonderful attorney and constitutional law expert from the Reagan White House. What a fine raconteur. My wife and I stayed in touch with him and his son and I heard him speak locally to a legal group on lesson from Vietnam. He spend hours afterward talking about Jefferson. A very different way to spend a day.

And at the beginning of the week, another of my spiritual advisor, Leonard Cohen was impressive. He made no pretense of being anything other than a 72 year old man wearing a dark business suit and a rakishly tilted fedora, kneeling and singing to the floor at times in a voice that came from somewhere much older and a place very close to the source of some ancient truths. His performance said it can get better, you can go deeper, there is more to life than a wrinkle free face and a angsty destructive kinetic energy of youth. He teaches us Lurianic Kaballah: There's a crack in everything. That's how the light gets in. And more. So much more.

Last night a wonderful Sabbath dinner with friends. Kosher for Passover.

Tomorrow, 102 year old Joshu Roshi will be giving a Dharma talk in Japanese. I plan to go, though I won't make the 5:45 AM start of meditation. Roshi's Dharma talks are not directly instructive, never conclusive, and always confusing and ponderous. At least to these unenlightened ears.

Our Passover Seder 4 days ago was wonderful. Only my wife and my son and his girlfriend. A comic cosmic Jewish Buddhist themed inward journey with the hopes of freeing up from our personal Pharaohs. Mine is living with the unknown. And great food. Thank you, wonderful wife.

Tomorrow is a time of rebirth for my Christian friends. I wish you all a Happy and Joyous Easter. 

It is again, another season of miracles. So many of us could use a miracle or two. Me included.

Keep praying. Keep learning. Keep creating. 

At least keep going.

Another scotoma and a very busy and beautiful day

Passover, Leonard Cohen, the blessing for the return of the Sun (it only happens every 28 years), and in the middle of the day another scotoma (like a migraine aura without the migraine, I was blinded briefly in the middle of the day for about 20 minutes this time in both eyes in the left field of vision, see prior post from 4 months ago). 

Not up for much writing but I will say the concert was endearing and powerful, the blessing was transcendent and glorious, the scotoma was only briefly annoying and not serious, and the seder was fun, delicious and helpful for growth.

All in all, a very fine day, with no time to reflect or comment on all its splendors.

Leonard Cohen

Cohen set the world right. A triumphant concert. 

More later. It is 2:20 AM.

Good news

My platelets were over 400,000, at the upper end of normal, so my bruising was not a sign of an imminent raid by renegade antibodies on those defenseless sticky cells that keep me from bleeding to death from the slightest bump.

To celebrate I stopped at Grant's for Guns on the way home and bought a necessary piece of equipment when you have cheap seats for the Cohen concert: binoculars.

As a long time member or the LC forum, I was able to pick up 2 tickets ahead of the general sale, and they will be waiting at will call in San Diego. Pre-concert meet-ups for rabid fans are being arranged, but I think I am more worried about eating. I doubt Copley Hall has a wide selection of raw vegan treats.

 

"If music be the food of love, play on" Well spoken, Mr. Shakespeare.

Will Cohen's " There ain't no cure for love" be remember for as many years?

The shoreline and the sea

So much to say.

On my last trip (Baltimore-Chicago), I noticed a right axillary (armpit) node. Was it there for a long time and I just hadn't felt it before or was it a harbinger of a lymphoma on the march? My CT scan showed a .5 cm node. This feels bigger. Nothing else I can feel. We will see what Dr. Forman says.

Another thing: The morning of my lecture in Baltimore, I woke up with what looked like a small black eye, without the punch in the face to cause it. No other bruises or bleeding from gums or nose or petechiae (small red dots that appear when platelets go missing). That is a trail I know too well and I have no desire to revisit. My platelets were a very normal 425,000 last week , and I will check them again tomorrow.

I ignored them both until my return.

So do the node and the bruise mean anything? Probably not, but in the land of remission, where whether I am listening or not, the sound of the hoof beats while not always apocalyptic, might be heard pounding at anytime, and demand that I stop what I am doing and pay some attention to the thunder in the arena.

This is the place I wanted to avoid. That was the reason for the transplant. This is the world I didn't want to enter.

I guess it is just one more trial. One more tug and push that I won't allow to upset my balance for long.

The CBC tomorrow will give me  reassurance about the bruise, but not the node.

Today with the full moon, the tide was so high, I couldn't walk under the pier. The old fishermen's village, normally 30 feet from the water's edge, had waves beating against its footing. If the fishmongers still went out in their dories, their work would have been made easy. I love the way the beach is always different. Yesterday, Patty and I saw our shadows in the mist. Our shadows in the mist. How strange and surrealistic pillowed is that?

Everything changes. Like the shoreline and the sea, as you said so many years ago,Mr. Cohen. I just keep walking and remembering what really matters.

My friend, rabbi Haim Beliak send me a link  http://modernhaggadah.com/CHAG/   for a downloadable Haggadah for Passover for Jew-Boos ( Jewish- Buddhists). Preparing a new service every Passover is a labor of love, and when it works well, of redemption. This year again, I pray we all can leave behind our personal bondage.

Before that, tomorrow I get to see my all time favorite Jew-Boo, fellow ex Montrealer now leaving in SoCal, Leonard Cohen. I last saw him when he last toured 15 years ago. He was a child of 57 years on that tour, my age now. I was a meager 42. My oldest child was 13 and the youngest who graduates from college next month was in kindergarden. Dylan was right: Time is a jet plane. Will Leonard tour again at 87? Why not. I would pay to see him. I'd only be 72 and I understand the grocer of despair is rocking out at that age. 

I was in my early 20's in Montreal the first time I saw him. Suzanne was in the audience.

I am so excited about the show, about Pesach, about walking on.

I am so lucky.

Home again to stay

13 of the last 18 days I have been on the road, or more correctly, in the air.

That was four cities for an equal number of lectures to nearly 2000 doctors and other healthcare professionals on migraines. I am happy to report that I was well received and well reviewed. I told them all of my CLL and transplant to bring home the message that we doctors can develop expertise in any new clinical area if we are sufficiently motivated.

It was six different art museums in New York, Pittsburgh, Baltimore and Chicago.  The Yousef Karsh portraits in the basement of the Art Institute of Chicago was the show stopper. His photos define iconic. The Einstein, the Shaw, the Churchill, the Ali, the Bogart, the Crawford....the list is too long. Don't miss it. Mind you, the circus show at the Baltimore Museum of Art was pretty great too. And I mustn't forget the floating balloons at the Warhol or the theater painting by a very young Chagal at the Jewish.

It was blocks and blocks of walking in the cold, and buses and subways and cabs and a few limos back and forth from the airports.

It was seeing some old friends and meeting some new ones. It was visiting two of my children. It was eating vegan or raw by bringing food with me or traveling long distances from my hotel to find my kind of food.  It was some astounding feast and some pretty bland feedings.  Add Karyn's Cooked to my list of great diners in Shytown. Thank you again http://www.happycow.net/

It was two excellent doctors visits.

It was great to get home last night and know that I won't be flying again for three weeks.