To all Fellow Yellow Diarists…

To all Fellow Yellow Diarists, Enlightened Friends and Supporters

There has been such a constant outpouring of love and generosity since I began the Yellow Diaries. As I prepare for the final leg of my treatment for Multiple Myeloma, a lot of you have asked how you can continue to support this journey.
First know that I am grateful for all your open hearted responses already.
Second: please do not illegally download the films into which Shamim, Hanan, Sheetal and I have poured our creative energies. Purchase The World Unseen and I Can’t Think Straight from the Enlightenment website and you will be supporting not just the films we created, but future film projects made with passion and integrity. Without this support, there will be no more. In addition, we the artists collectively cannot sustain ourselves financially if you are watching the fruit of our labour for free. Think about it- its difficult enough to remain true to your vision and passion. Working with Shamim and Hanan has been deeply inspiring and I would like to work with them again and again. I would like to continue to make my living as a actor committed to working on projects which illuminate and provoke. This can only happen if you express your support by buying the films.

Happy Holidays and a Yellow Wish for all-
Love,
Lisa

Two Miracles

I’m a scientist. I don’t believe in miracles. They are impossible. However, twice this year I have been presented with an event so improbable and yet so undeniable that my logical, analytic brain staggered as if knocked out in a WWE Smackdown. My brain still cannot explain away these, what shall I call them, great, unexpected gifts? (None of my terminology seems to be correct. We like to say

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Operation Reboot Continued

Keep your chin up. Like a nosebleed.

I got that off facebook.

Ha.

Light precipitation tonight. All over my pillow. Every morning I wake to tickle from disengaged follicles. My hair is falling, my hair is falling! Evidence. Finally! The little piles make me think of the pleasant tangles washed up on the beach of Georgian Bay. Each length has a story, not necessary to know. But necessary to note. This reverse sowing that’s taking place on my head.

I am so relieved.

Suppose your hair doesn’t fall out.

This from Bobcat while shaving my head. He was concentrating on the back of my scalp. Two long Hassidic like sideburns framed my otherwise exposed face. An oversight or it just amused Bobcat to suggest eastern european origins. Wrong gender, but what the hey.

Whaddya mean suppose my hair doesn’t fall out?

I began to tug at the wispy sideburns.

I mean it would be funny if after you get buzzed, you don’t lose your hair. Ha!

Larry David eye narrow.

But EVERYONE told me they lost their hair. Sindi had thick, beautiful Indian hair. She thought it would last. Then it fell out in clumps in the shower one day.

I paused, captivated by the drama of it. An extreme Rapunzel moment.

You know Bobcat, every Cancer rookie believes they are different. The Cyclophosphamide or Melphalan is not gonna make ME pukey or constipated or infertile….

I’m special.

Well as it turns out, the Great Cancer archipelago is populated only by special people.

Who are there by special invitation.

Most of my words were drowned out by Bobcat’s buzzer. Even in my own head.

That’s why I’m happy I’m losing my hair. It’s a trap, but I’m entitled to this happiness. This increment of everything. So I enjoy the increasing spread across my head. There is a lot to be said for the impact of a shiny scalp. And never again will it be so acceptable for someone to find your hair in their food.

mazeltov

From the wispy wizardress.

So Operation Reboot Chemo began on November 23rd. The first step in mobilising those stem cells. Three days after that first hit, Neupogen or G-CSF injections began. G-CSF stands for ‘granulocyte-colony stimulating factor hormone’ and ‘I’m ready for my Master’s degree’. So the neupogen stimulates your bone marrow and increases the number of circulating stem cells. Chemo kills, neupogen grows, so you could say there’s an accelerated overthrow of the marrow status quo. A White Revolution without the KKK or the Shah. Then after a few days, you report to the Stem Cell Collection Unit. Blood is drawn and the results of the blood work, especially a test called CD34 decide whether you get hooked up to a cell separator device, known as an apheresis machine.

You can salute now.

It’s metallic transcendence.

Dials turn in steady sounds on the COBE Spectra Machine. I don’t know how to pronounce apheresis. But something close to sacred is taking place.

Or at least, they don’t let the sacred be taken away.

For a better description of the process http://goodbloodbadblood.wordpress.com/

Me, I don’t have the knack of objective reportage.

So I will digress.

I got my first neupogen injection at PMH on November 26th. After that a homecare nurse came every morning to affix sharp point to syringe. I insisted on two separate injections as one continuous plunge felt like a fountain on fat wings.

Talk to me. Distract me!

Dad blinked from the computer where he was researching MM. My father has walked all the earth and back in pursuit of a cure without leaving home.

Moved by the quiver in my eyes, the nurse started talking. She told me about a trendy clothes store I have never heard of and cannot pronounce. She spun a story about bargains and made in Bangladesh wares which made me forget the neat ways of her hands. And when it was over we threw the used syringes into a glass bottle.

I have medical waste!

Neupogen can cause bone ache. Or let’s say bone sensation.

Finally. A message from the marrow. Let it tilt back its maw and speak like a gloomy pelican.

Oh boy.

I didn’t know what I was in for.

Black merchandise.

Yellow bone.

Who has seen your bones?

Neither you nor I

But when you bow your head in pain

The marrow passes by

And Christmas is close. I have a list. It’s simple.

I wish everyone Critical Illness Insurance.

And for myself, a zygote.

Children: gather round and heed my advice. Ensure you have Critical Illness insurance. Most critical illnesses including Cancer are covered under these policies. If you are diagnosed, you should receive a tax-free lump sum payment designed to alleviate the financial strain and deal with non-medical expenses. Let me tell you- you don’t think about it when you’re a young raver and everything circulates around your pretty axis. You don’t want to think about it later when gravity takes charge. I hope you never have to cash in, but…

Think. About. It.

Or don’t think about it. Just get some.

I owe my first born to the Actra Fraternal Benefit Society. It’s my actor’s union insurance program. They are providing me with some weekly income benefits and helping to cover the cost of medication. That’s one thing they don’t tell you when you join the Cancer Club. Membership is honking expensive. If AFBS didn’t help cover the cost of my treatment, along with the Trillium Drug Program, I’d be donating my internal organs for a profit. All of them.

Hey that reminds me. I still have a ziplock bag of my hair.

Yellow Fever

This gives me Yellow Fever:

Dear Lisa R Ray:

Thank you for your recent application for Line of credit Critical Illness and Life Insurance

Unfortunately, we are unable to offer you the Line of Credit Critical Illness and Life Insurance coverage based on your history of cancer.

Buh.

Double buh.

How dare you brand me not by the perfumed magnitude that I carry within, but by this hard footed detour where my body takes me for the moment. Are you punishing me, are you marginalising me for a condition which arrived from some outstation we cannot pinpoint or know?

Do we need to stand off for a fistful of dust?

I want to speak and be overheard. And stretch wide because there’s space enough.

Makes me want to lower my bald head and charge.

Can you say ‘advocacy’? Will you sell light on the road with me?

I went to Wellspring, a non profit organisation which offers a wide range of cancer support programs. I went for advice on government financial assistance, cause, you know, I’m unemployed. And I’m gonna remain unemployed for a while. By the end of my meeting, Eileen had a sticky smile and had to rub her forehead a lot.

As a self-employed freelancer, I have no access to UI or unemployment insurance. Canadian parliament just passed a bill entitling us non-conventional workers to the same, but let’s see what happens. As for CPP or the Canadian Pension Plan, you have to contribute 4 years out of the last 6 to qualify for disability.

So, if you’re in Canada, make sure you contribute to CPP. Even if you are a self-employed shmuck like I was.

Except I contributed three out of six.

Um. You need a financial advisor. Eileen rubs her head one last time.

For the dead there’s land enough.

That Neruda. You can cross reference his every line.

So this Christmas, give yourself the gift of a little extra insurance.

And pomegranates. High in antioxidants. Dad wordlessly hands me a bowl every evening.

As for the zygote, I have not yet frozen my eggs. But I must. This morning I mobilised myself to a fertility clinic. I may need to delay my stem cell transplant to realise the hope for life in this life. A four celled zygote. We won’t call it Neville though.

That’s the name of our hairy baby. Bobcat and mine. More on that later.

Bobcat is back. I am at peace. This separation was not long. But it was too long. Yellow sobs and heart flutter became a cross country Bobcat ball breaking affair. We are entangled, we share a yellow soul. So bobcat out of the 416 is  a wasteland arrived. He’s the source and without him the Yellow hive goes silent. It stop with a shudder, all my insides.

I have not been like this before. Besides shape shifting my body, the cancer has shifted my psyche.

It will be ok.

La la la la la.

He runs his hand over my shiny head.

Where else have you lost hair? Hmmmm?

LAUGHSHOCK: the recurrent shock of laughter in life. Or life in laughter.

Bad Bobcat. You so bad.

Another Shuvo-ism: we recycle every single molecule in our bodies on average every 7 years, you are just doing an assisted clean up of your immune system a little ahead of schedule!

Keep me posted as you prep for your coming ctrl-apple-reset

December 21st, the solstice is called Borodin in Bengali, my father’s native language.

Borodin means

Big Day.

Radiating Love All Around – by George!

Myeloma patients take note:  Multiple myeloma is a unique cancer and you will not be well served in your treatment decisions if you do not allign yourself with a doctor who specializes in treating myeloma.

Sue was referred by her regular doctor to a very nice cancer doctor in Fresno.  That doctor, an oncologist without experience treating myeloma, upon properly diagnosing multiple myeloma, referred Sue to Dr. Jeffrey Wolf, a specialist in treating multiple myeloma who is practicing at UC San Francisco Medical Center. That referral was the best thing that could have happened under the circumstances.

There are a number of reasons why I say it was the best thing.  Foremost among them from my perspective is that I have enjoyed these all expenses paid vacations to San Francisco. Foremost among them from Sue’s perspective is that Dr. Wolf really knows multiple myeloma.  As a bonus, he’s a pretty nice guy.

Sue has talked to at least six hematology/oncology doctors in the past ten days about the pain she is experiencing.  About ten days ago the Fresno oncologist misdiagnosed Sue’s pain as osteoarthritis and prescribed Vicodin.  The pain persisted and increased, and Friday Sue paid a visit to Dr. Wolf.  He immediately hospitalized her and ordered a new MRI.  The new MRI showed inflamed nerves (nerve roots) radiating out of the thecal sac at the bottom of the spinal cord (in the sacral area near S1, S2, and S3).  As I understand it, the thecal sac is like a, well, a sack, that surrounds the spinal cord.  Several doctors from this hospital stopped by Sue’s room to discuss the inflamed nerves and possible causes.  But none of them were certain of the cause.

Enter Dr. Wolf.  He was off Saturday and Sunday but back on the job today.  Apparently unknown to a lot of people, even medical professionals working in the bone marrow transplant/stem cell transplant department of a major regional teaching medical hospital, was this important, arcane fact:  Chemo therapy can kill all (or mostly all) of the myeloma cancer cells in your body except in two “sanctuary” areas of the body.  Those are: (1) in testicles; and (2) in the thecal sac.  Thus, and particularly in regard to the area inside the thecal sac, the blood tests may show the myeloma to be in complete remission (CR), but there can still be active myeloma cells within the thecal sac.

Dr. Wolf is quite certain that is what is happening with Sue, and that it completely explains her recent symptoms.  Further, the only way to treat these cancerous cells within the thecal sac is with radiation.  Fortunately, the radiation will be carefully directed to cause minimal tissue damage, and the nerves can practically take unlimited radiation without damage, while the myeloma cells are very sensitive to the radiation and should be totally eradicated by this treatment.

Sue is now (circa 2 p.m.) undergoing the PET scan which will show Dr. Wolf where all the live colonies of cancer cells are within the thecal sac.  He will then be in direct contact with the radiation oncologist in Fresno to indicate what needs to be done.  Sue is being discharged this afternoon and will be going back to Fresno with me today.  She’ll start radiation therapy in Fresno as soon as possible.

Once again, our thanks go to all of you for your prayers and concern.  Additionally, special thanks to Jerry, Ermintrude and Pat for your comments on the issues of radiation and PET scans.  I raised your concerns with Dr. Wolf.  Pat, you are correct that the PET scan is the only way for Dr. Wolf to identify where the cancer cells are clustering.  Jerry and Ermintrude, this radiation will be very directed and, for better or worse, it is the only way to kill myeloma cells within the thecal sac.

So off we go, radiating love all around.

Suki-Yaki Doctor Talkie – by George!

Today was another cloudy and chilly day in San Francisco, but the rain stopped and the sun came out in bits and patches.  Chilly with patches of sun, but not real warm sun, kind of describes the day in all it’s particulars.  Our blog buddy, Becky L, warned us early on after the myeloma diagnosis to hang on because this would be an up and down ride.  Well, Becky, you were right.

Sue was napping this afternoon and I was bored from being cooped up in a tiny hospital room while the City was doing its Sunday thing, so I decided to take a walk.  I walked west on Irving to 9th Avenue and encountered the Thai Noodle Cafe.  There’s nothing like a big bowl of steaming hot Thai suki-yaki soup (not to be confused with Japanese sukiyaki).  Matched with hot sake wine and soft Thai music, it’ll take the chill off any day. It’ll melt your stress and put you in a meditative state of mind.  Or is that a medicated state of mind?  Oh, never mind.  Moving on.

I bought a Starbucks cranberry bliss bar on the walk back to appease Sue and got back to the hospital just in time to hear the latest from the on-duty doctors.  Sue’s midnight MRI Friday night revealed inflamation in the nerve roots (the area where nerves leave the spinal cord) in her lower back (regions S1, S2 and S3).  This inflamation extends out on both sides of her sacrum, and is the probable cause of her back pain and the probable cause of her muscle weakness in her legs and the probable cause of the increase in her neuropathy.  The good news today was that there is no evidence in the MRI of a fractured bone and it does not appear to the doctors that Sue’s symptons are resulting from a tumor or myeloma cell mass pressing on Sue’s spinal cord.

There are a host of possible causes of the inflamation of the nerve roots, and some of those are not good.  Well, they’re all not good but some are worse than others.  Some of the possible causes which have been discussed are: (a) the nerve damage is resultant from the Velcade (that’s the same awful chemo stuff that caused Sue’s neuropathy, but which also killed a bunch of the myeloma cells and stopped the original back pain); (b) a viral injury, possibly related to the shingles which attacked Sue a couple of times during her chemo treatments; (c) possibly the myeloma is acting up again in that localized area; (d) some of the lesions which occurred in Sue’s pelvis and sacrum prior to chemotherapy treatment could be implicated.  The doctor used some words I wrote down but couldn’t understand or spell well enough to google.  I thought he said something like “gimbray syndrom” but he dismissed it immediately as just talking out loud, so I left it hanging in my note book like a dangling participle.

The other good news is that, for now, the extreme pain Sue was experiencing is being controlled, they are treating the inflamation with steroids and that appears to be working, and they are continuing to investigate to find the cause of this new problem.  The bad news is that Sue’s not going home tomorrow, but I probably will.  The other other bad news is that this guest chair “bed” they let me sleep on in Sue’s room is killing my back.  I’m going to have to apply to get some of Sue’s pain medication if I have to sleep on this goofy thing too many more nights.  Sheesh.  Grand Hyatt king one night and couch rat the next.  Like Becky said, up and down.

The doctors here have not ruled out radiation therapy.  The plan is to put Sue through more tests tomorrow, including a PET scan (that’s Positron Emission Tomography).  Dr. Wolf is going to be around and back on the case tomorrow.  We like Dr. Wolf.  He’s as comforting as a sheep’s wool sweater on a chilly San Francisco day.  Hmm.  Maybe alpaca?

Shatner and Palin

Perfect follow-up to my last post. William Shatner appeared on the Tonight Show to do a “dramatic reading” from Palin’s Going Rogue book. Then to Shatner’s Surprise, Palin appeared to read from his autiobiography “Up Till Now”. Made for an amusing Tonight Show moment.

Really Good Day

I just called mom, probably 6:45. She hadn’t answered two of my earlier calls. When I DID get to talk to her she sheepishly told me that she had swiped the earplugs they gave her for the MRI. She said they were really good and had a cord attaching them so they didn’t get lost. In her words “they’re really nice.” Anyway they had helped her get a good two and a half hour or so nap in this afternoon. I guess she was up late last night. They took her for an MRI last night between 11:00 PM and 1:00 AM all the regular people had gone home for the night but these people were called in special. In the morning, all the doctors came into her room. She said it felt like an episode of House. They had just had their pow wow, came in with hypothesis, doing strength tests etc. One side (I think she said left) is significantly weaker. Her spinal column is in tact, some of her nerves were showing inflammation and maybe this could be connected to the shingles she had early on in the diagnosis.
Mom says her pain is under control, they’re giving her a medication called Dilaudid.

She says all of this stuff that’s going on is affirming because these doctors are recognizing that the issues are real, and are seriously investigating the reasons and what can be done to fix them.

This experience is soooo different from mom’s last experience. She said she had a “really good day.”

Still no answers, but the detective work is going. Progress is good right?At least things are happening.

Saturday 9:30 AM

My mother wanted me to reasure all her readers that :
She is still in general remission, but because her 13th and 14th chromasomes are also mutated her strain of Multiple Myeloma is much harder to treat. This is why Dr. Wolf wants to get to the bottom of this and figure out whats going on with the lesion in her bone. Granted this is still sort of an if and that’s why they’re doing the tests.

Some good news is that they finally found a medicine for the pain. (Vicodin and Demerol werent really doing the trick.) She says it kicks in quickly but only lasts for an hour/hour and a half. It’s important that they figure out how to manage the pain so she can com home for radiation.

Ellen’s Lawn

I’m back

I never left but I’ve been busy. Committing my flesh one place while my mind goes somewhere else.

Like yesterday. Critiquing another hospital drop ceiling, while a radioactive marker circulates in my blood. Par example. Why are ceilings not more user friendly?  Or counting to three and going to that tranquil pasture in my head while a Quinton Line is yanked out of chest.

No wonder I’m feeling fractured.

I am not feeling whole.

So I’ve been forging a smile. Then I show up. Friends help me cross thresholds and while we laugh and my mind is otherwise engaged, my body can quietly blubber away. I sit on the floor of Ted and Tara’s kitchen and hug Flora. Contact with a small, vital body is the antidote. My body unshrivels. Arm move without fear of IV reflux. Fuck the self-pity. Mental smack upside the face. We do what we are meant to do.

What we need to do is play.

Playtime!

Everyday has been playtime. More or less.

And we all know that playtime ends with fist shakes and tears.

That just about sums up my last two weeks.

Oh yeah- and I still have hair.

It’s growing, dammit.

But you wanna hear about the stem cell collection, right?

First, there’s a laminated painting in the stem cell collection suite in PMH, right next to the washroom when you first walk in. It caught my eye cause I have a thing for lamination. Under the painting, words. My next favourite thing is a laminated parable:

Ellen’s Lawn

An Analogy for an Autologous Stem Cell Transplant

During my stem cell reinfusion, a casual observer had asked for a description of the process. Dr Franke’s response, directed at me was, ‘You are a lawn’

My lawn had weeds, so weed killer (chemotherapy) was applied. The results of the weed killer were not seen for a number of days but the weeds slowly started to wither and finally died. Because the weed killer was so strong it also wiped out some of my lawn (bone marrow) as well! Then the rains (saline IV) came and washed all the weed killer away.

‘Today I’m planting your new seeds which will take time to germinate. In about a week we’ll add fertilizer which will help your newly germinated seeds grow.”

My ‘seeds’ responded to the fertilizer (Neupogen) and pushed through the soil into the sunlight. With the light from the sun (nurturing) and all the special care, the new lawn became lush and healthy.

buh.

So like, I’m grass.

Yeah, I’m grass.

That’s why I’m feeling trampled.

Day one of harvesting is like any other. I know I’m gonna be hit with an ‘intermediate’ dose of chemo so I show up prepared: with Bobcat and a scrabble board. I am slightly alarmed that today, I get a bed. It feels considerate and ominous at the same time. Yellow quakes.

I haven’t met a PMH nurse yet that doesn’t braise my brisket. They are uniformly engaging and compassionate. In an un-uniform way.

So my nurse explains how the next four hours are going to go.

I am accessed. Port drip. Tube and plastic slide.

And GO

We begin a rabid game of scrabble. If scrabble were a contact sport, this would be the bloodiest rugby game on record. Played in the Collesium. With spikes.

It's a scrabble-off

Bobcat’s eyes go all scottish loch on me- opaque enough to hide a beast.

We yell. We challenge. I scoff. He snorts. I tug my  IV line. A little.

I even forget the liquid siege will burn through me for a while.

I throw down a ‘fez’. He tries to convince that ‘pos’ is a word. Nurse mediates. I want a scrabble dictionary for Christmas.

And then, ‘hitched’ takes my lead.

Bobcat win.

Dad enters. As we collect the pieces of words, Bobcat grips me with his eyes.

Remember how you felt. I want you to feel angry. And charged. Fight the bitse.

And he left.

Dad and I watched saline drip changed for chemo. Not the Velcade I’d been on for four cycles which was an antipasti pump into vein, but a primi secondi chemo. Acid drip for one hour. And at the end: nausea, fatigue, hair loss and other assorted dolci.

I even get pink ice. Apparently this counteracts the sudden sinus congestion and headgroan when the poison hits your bloodstream. You know, brain freeze fixes just about anything.

Obama want a popsicle?

THE solution to all your ills

From what I gathered, this first blitz of chemo helps to mobilize blood stem cells.

Stem cells, of course, are thought to be the origin of all blood cells. They live in bone marrow and are capable of producing red and white blood cells as well as platelets.

They are the thespians of your organism. Eager to morph into something else.

And three days after chemo, Neupogen shots begin.

And then you begin to mobilize.

A very worthy endeavour I’m told.

But before that, my saintly father took me home.

Saint Salil, my dad

I fell into bed. There I remained. For the next two days.

Later that week, Bobcat had to leave Toronto on work. Before, I had strength not to notice his absence. Now my sight costs me. I’m not sure if we can make it. I hope. But I’m not sure.

Everything is wounding me on this vigil.

If I had to describe a stem cell collection, I’d say it’s like watching a jet refuel.

There’s something significant going on. You can feel it. It’s awe-inspiring and essential. For what will come next.

Full flight.

But truthfully, there’s nothing to see.

It’s downright mundane.

Except, you know, I got the whole spectrum lighting experience. Even threw in a dawn simulator along with a hearty dose of Seasonal Affective Disorder (SAD). So I have tales of Quinton lines, and other assorted drama to share.

And unpeel.

It’s damn cold today. I”m not into Toronto just now.

As my log burns low, a Yellow Delivery. News from Andrew Winters, the transplant coordinator.

My Stem Cell Transplant is scheduled for December 21st!!! In Hamilton.

Grace.

And Grit.

A book recommended by Moira, Grace and Grit. I started working with Moira on healing beyond the body.

Tomorrow a playtime with words. I will be reading at the Small Press of Toronto (SPoT) Winter Fair at the Gladstone Hotel. I am not sure what to do. Many other experienced wordsmiths will be reading too. I will watch them. Then I will breathe in a way which hopefully doesn’t make me light-headed. Like during my Pulmonary Function Test last week. Which I think I failed.

I am frightened in a way which makes me forget the Cancer.

I am frightened in a way which makes me feel alive.

And I will remember:

Exactitude is not truth.

Thanks Matisse.

You’ve given me some copy to live by.

And on December 13th, a kirtan for Carrie Lundy’s mom Audree. Audree was diagnosed with advanced colon cancer last year. Recently her doctors sent her home. Audree and her daughter Carrie are fighting off feelings of defeat in Winnipeg. My Moksha yoga sangha will be doing a traditional call and response chant for Audree Saturday evening. Sometimes the best response is to sing.

We’re singing with you Audree.

News from Shamim and Hanan. Enlightenment Productions has raised an additional $5000 online for the David and Molly Bloom Multiple Myeloma Research Chair at PMH.

Whoop whoop.

6:00 PM

The Doctor in S.F. noticed some stuff in a past MRI and thinks it may be that OR that there could be a pocket of cells that didnt get killed. If this is the case she’ll begin radiation.

According to ther “This doesnt mean anything bad…I’m not sick…I just hurt.”

She says this situation is a lot different because she feels normal, just pain.

When I talked to her on the phone at maybe 5:40 pm she said they had given her quite a bit of demerol. It didnt really help the pain, but she felt good. Haha. She says its nice to have people who know what theyre doing with the meds because she doesnt feel bad about taking more when other people are in charge.