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.


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.


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.


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.

Bump in the Road

Mom has been having a lot of hip/leg/back pain lately. It had been gettting worse. She figured theyed get it sorted out on her appointment in San Francisco, but didn’t think it’d be anything big. Ijust got a text message from her saying that the “pain may be caused by lesion in sacrum. Admit to csuf med today. Not emergency, but timely. Pray that we figure it out. Please.” Soooo that was quite the news. I’ll be posting updates as I get them here.

Strange Attractor

Most of my friends don’t find me to be all that strange. They wouldn’t be my friends if they did now would they. Has anyone ever told you, “Like attracts like, You reap what you sow or Be careful what you wish for! or the ominous You are what you eat!” Given a 7 per 100,000 chance of contracting myeloma and a 1 in 6000 chance of meeting someone with myeloma why did my dearest of friends have to join this dreaded club? My head feel like this strange attractor (created by sandyckato) when I ponder the significance.

So why do I ponder, toss, turn and toil? That is the nature of still needing a bit of work to do before total enlightenment. In the mean time I am honored to finally be able to justify all this obsessive compulsive myeloma info gathering I’ve done over the last 4 years. Of course he is not particularly interested in it, but that just means I don’t have long boring conversations with him. I secretly record every number, ask leading questions and obsess about their significance. (Insanely persisting in the same behavior over and over again expecting a different result every time.)  It is hard to believe that it has been 4 years. I’m in a different shape compared to 4 years ago, but then that is in large part because I’m inherently lazy. My left forearm is still not attached to my left shoulder so that means I don’t do shit and I have become round.  A new shape.

I smile tons and life is grand. Happy Holidays!

catch up

I apologize for the abruptness of the last post. I was really stressed out and scared, but I am a lot calmer now. I thought maybe I this might be a good time to catch up on my dad’s experience.

As mentioned, my dad was diagnosed last April. He was at stage 3. He never liked the doctors so prior to his bout with pneumonia, he never went to the doctors. We suspect that he had MM for a while. His hospitalization with pneumonia was last Feb and from there everything was a blur. Many tests were done and next thing we know, he was diagnosed with MM. Two months later, he was admitted for endocarditis, and while he was in the hospital he had his first BMB. His bmb showed 80% plasma content. After his month stay, his o/h started him on 10mg of Revlimid and low dose Dex (started low due to prior infections) and the Rev increased to 25mg over the next months. Rev/dex worked very well, brought him to almost a complete remission. His o/h started talking about a aSTC but he was responding so well to the Rev/dex we pushed it back.

A little introduction:
When my dad was diagnosed he was 57. He has always been healthy and active. We immigrated here in 1992, we have a typical immigrant story, except for MM. My parents worked their way up from having very little to making something out of themselves. It was really hard for them to adjust to a whole different life and country, and now they have to adjust to the diagnosis. My dad has amazing doctors and nurses, we are so thankful for all they have done.

So a little about me, I am currently finishing up my last year of undergrad, majoring in Neurobiology, Phyisiology, and Behavior, with a minor in Nutrition. I can’t wait to graduate and move back home to spend time with my family, though I also really like living on my own. It is hard to fully enjoy being on my own when my heart is at home with my family, especially my dad’s. My dad’s diagnosis has influenced me a lot in many ways. After I graduate, my dad’s transplant doctor offered me a research position in MM. I have always wanted to start a blog that documented my father’s experience with MM, but I was a bit hesitant. I don’t share much of what I go through with my friends because I don’t think they would understand and I definitely don’t want them to feel bad for my family and me. Sometimes I feel like I can’t share my thoughts and feelings and it just builds in me. I thought maybe this would be a good chance for me to express how I feel and my perspective on my dad’s myeloma experience. I guess I exploded in my last post because everything was getting so heavy.

D3 Post Transplant!!

Today, December 07, 2009, is day three after stem cell transplant. I go from the transplant house to Methodist’s Hospital every morning at 1000 CST for blood work and checking the Hickman Catheter. On Day 1 (Saturday), I went over to the hospital and had the bllod work done and back home by about noon. All was going weel, no nausea fromt he melphan from the preveious couple of days, no side effects/uncomfortableness from the transplant etc. About 1500 R on Saturday I got a call from the hospital, I needed 2 units of blood for low hemoglobin. No problem, mom and I walked on over and spent 5 hours getting a blood transfusion, then walked back to the transplant house.

Day 2, Sunday, was rather uneventful. Went to the hospital, bloodwook, checked the Hickman, etc. Walked ome had lunch, etc, did a litle computer work. Missed the Vikings first touchdown but did see several of the Cardinal’s TDs!

Day 3, Monday, started out as usual. We caught the shuttle too the hospital and went to get the blood work done. Trouble is this time the lines were plugged, seems the catheter lines had clotted?????? I really don’t like the idea of blood clots but the nurse practicioner (sp) rea-assured me it wasn’t what I thought. the BMT nurse put some solvent in lumens and let it set for a while and then is started working. Blood draws as normal. The BMT nurse did change the dresssing on the Hickman for us so that was nice, Mom got to see it done again for when she does it! Day 3 was not done yet, we had to get some more meds before we left the hospital, Norvasc for blood pressue so we picked that up on the way out, got my glasses fixed (the plastic part that goes over the left ear fell off somewhere Saturday) and went and ate lunch. We got back to the room at about 1400 and the phone rang at 1430, that I had to come back to the hospital to pick up some potassium supplements. another trip back to the pharmacy and more scripts!

So today, I added 3 more pills to take to my daily routine, removed 1 other, have a whole rainbow of fruity flavors to take……!

Mom started charting my calorie and protein intake for the dietician, I am to target 1900 calories and 75 mg of protein per day. Well sunday was a good day, the dietician figured it was bout 4000 calries and 300 g of protein. I thought I may come up alittle short! Today should be OK to, we had a big breakfast and then went to the Pannekoeken for a lunch of country fried steak.

Day 4 post transplant is tomorrow, the BMT nurse said my counts will continue to drop for a couple of more days until engraftment and then start to pick back up!

Nice to report no nausea, vomitting, diarrehia…. and my energy level seems to be OK. Mom has been a big help, we go for a couple of walks a day and she takes care of all my meds and gets my meals ready for me. The BMT nurse said that the caregiver is very important and boy was she right!

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Dex and Dope

Highly intelligent people often display a huge gift: the ability to rapidly and distantly free associate, connecting ideas to areas that are so far away that most people can’t see the connections unless they are patiently taught. There are other aspects to intelligence, of course, but the ability to free associate over vast mental distances is one of the most obvious to the sensitive onlooker.