19. One year later…

It’s been one year since I was diagnosed with multiple myeloma. I have learned much since then – about the disease, about myself and about the joy of support from friends, family and even strangers. It has not been an unprofitable year! Nonetheless, both Joni and I will be glad to get back to our jobs this month. It feels a bit like going back to school after a long break, back to something we are meant to do and back to feeling useful.

I have to remind myself from time to time that although I hope to spend many years in remission this myeloma will one day reappear. Relapse is more or less a fact of life for me and for the other 1200 Canadians who are diagnosed with MM every year. And so I feel an obligation to continue to help fund the research that will save our very lives in the future.

OUR APPEAL TO YOU

Please consider supporting our efforts. You can make a tax deductible donation online at our personal page:   http:/pmhf3.akaraisin.com/MMSTWM2012/jackieseaton1/

All the donations we collect will go to fund new research and clinical trials at The Molly and David Bloom Chair in Multiple Myeloma Research at the Princess Margaret Hospital in Toronto. This relatively young program is dynamic and has risen to become one of the leading institutions for myeloma research in the world, constantly moving discoveries from the lab to the clinic.  Year after year new, less toxic drugs and therapies are approved in Canada. A mere 5 or 6 years ago a diagnosis of Myeloma usually translated to fairly brief and terrifying outcomes. Today research has changed MM from an aggressively fatal disease to a chronic and manageable one with very optimistic outcomes which are expanding constantly. Multiple Myeloma is on the ropes!

A STORY

I have to tell you this story: A few weeks ago I was notified that a donation had been made on our page by someone whose name I did not recognize. I checked the phone book here in Perth and there was indeed a listing. So I called, curious to find out more.

 ”I read about your plans in the Perth Courier for Myeloma Awareness Month in September”, she said, “and I wanted to do something.” She came to Perth recently from northern Ontario, to be close to her grandchildren after the death of her husband. He died of Multiple Myeloma only 6 years ago. The problem was that he went undiagnosed, or misdiagnosed, for far too long. Eventually his kidneys failed and he soon succumbed. I did not say the words to her that were blaring in my skull: “This should not have happened!” What I did say was that her story strengthened my resolve to improve awareness of Myeloma symptoms so that patients themselves are better prepared to ask their doctor about the possibility of blood cancer before irreparable damage is done.

AN INVITATION

On September 23 at 2 p.m.  The Perth Citizens’ Band  (celebrating its 160th anniversary!)  is giving a free benefit concert for Myeloma Awareness  in the beautiful Stewart Park Band Shell. For the finale of the concert they will debut a new composition by Perth composer Jack Hurd, the “Myeloma March”. Many of our friends will be bringing complimentary home baking and apple cider. This is not a fundraiser, just a good time musical event.

Have a great Fall everyone.

Love,

Jackie and Joni

18. A Clean Bill of Health !

Hi everyone – We have some great news! Today is day 100 since Jackie’s stem cell transplant, a milestone the transplant team uses to mark the end of a period of high alert for any sign of infection or other threats. A couple of days ago he met with a hematologist for an update. The doctor gave him the very best news we could hope for.

Most important, the protein markers for Multiple Myeloma have dropped by 94% since diagnosis. Complete remission doesn’t really apply to Myeloma patients because there will always be a few rogue proteins around if you look hard enough for them. But he’s about as close to remission as one can be. The technical designation is “Very Good Partial Remission”. In other words we look forward to  years, possibly many years, of normal life and activity.

His immune system has rebooted successfully and all the restrictions on food, well water, dental work, mowing the lawn, hugging, and a host of other bothersome items, have been lifted. He can pick up where he left off almost a year ago!

Should he relapse at some point, as almost all Myeloma patients do sooner or later, there are various effective therapies at hand, including a bag of his own healthy stem cells currently being stored for a second transplant if need be.

Life sure looks good from here. It’s back to the garden and back to the studio!

JONI

Every time we post a blog entry Joni and I excitedly wait for the responses – and they tend to flood in almost immediately. It puts us in touch with family and friends in a very unique way and of course buoys our spirits, making this whole thing, perversely, fun. I won’t dwell on it, but I need to say thanks. Really. Thanks. A lot.

As you can imagine we are wasting no time regaining strength and getting back into the things we love to do. No surprise that we try to include Ivan at every possible opportunity.

__________________________________________________

A PLAN FOR 2012  – FUNDRAISING AND AWARENESS

I don’t know where I’d be without the transplant team at the Ottawa Hospital; and of course they wouldn’t be doing what they do so well without a host of Myeloma researchers behind them.

September is Myeloma Awareness Month and again we have a plan to let  those around us know more about Multiple Myeloma and to further the tremendous strides that have been made in the last five or six years in treating this disease.

Last year we were joined by about 75 friends and all of us actually marched five kilometers up Highway 511 north of Perth. It seems everyone is marching for a cause these days and good on them! But we wanted to try something different this year in Perth.

We have a local institution here – The Perth Citizens’ Band. It is celebrating its 160^th year of continuous music making and is by far the oldest band in Canada. Incredible! When you think of it, it’s even older than Canada.

The Band has  generously agreed to support Myeloma awareness by giving a free public concert. And it gets even better.

FRIENDS AND FAMILY: WE ARE PLEASED TO ANNOUNCE…

_____________________________________________________________________________

MYELOMA PATIENTS ALMOST ALWAYS RELAPSE AT SOME POINT. IT IS THE INVESTMENT IN RESEARCH AND TRIALS TODAY THAT WILL SAVE US TOMORROW.
The Princess Margaret Hospital is a major, international centre for Multiple Myeloma research and is on the cutting edge of innovative, life-extending treatments.

IF YOU WOULD LIKE TO SUPPORT US BY DONATING TO MYELOMA RESEARCH AT THE PRINCESS MARGARET HOSPITAL

PLEASE VISIT OUR PERSONAL PAGE:

http://pmhf3.akaraisin.com/MMSTWM2012/jackieseaton1

Contact:   Jackie Seaton & Joni Seligman

Email       js@ripnet.com

17. Press “PAUSE”

We have been discharged from hospital and are back home in Perth. I will have regular monitoring at the Transplant Clinic, twice a week for the first few months, less often after that, but I’m more or less on maintenance for the next year. By then I should feel as well and energetic as ever I did.

These chapters were intended to tell the step by step story of my treatment for Multiple Myeloma as well as to bring a better awareness and understanding about a disease most of us had never heard of. But the disease and the treatment are now mostly suspended and with a little luck I will soon enter a long period of remission. Perhaps many years.

So for now, let’s take a break. We hope to have a brief update later in the summer – and also, I have I an exciting new “Myeloma Event” for September (Myeloma Awareness month) that I’ve just started planning and I know you’re going to want to know about that!

_____________________________________________________________________________

This Blog has meant so much to Joni and me. Your responses in particular were buoyant and funny and encouraging no end. It also gave us a framework to make sense of a capricious, life-altering event which might otherwise have overwhelmed us. Thank you all for being a part of it.

The truth is, the writing has recorded a memory I want to hang on to. What are memories, Woody Allen once wrote? “Are they things we have or are they things we’ve lost?” I can’t remember ever being so provoked and challenged by such a simple statement.  You see, I want to keep this memory and will shield it any way I can from the erosion of time. But there is another part of me that wants, more than anything, to lose it.

16. Unanticipated …

Before we go to the “unanticipated” side of the ledger I want to say a few nice things about the Stem Cell / Bone Marrow Transplant Unit (BMT) at the Ottawa General. It was set up about 18 years ago and is almost unique in Canada, with one exception in Vancouver, in the way it delivers treatment.

What makes this program different, and logistically amazing, is the coordination of hematologists, GP’s, specially trained nurses, nutritionists, pharmacists, and Canadian Blood Services all under one roof working 24 hours a day, 7 days a week. Patients are admitted in theory as in-patients. All their medication is therefore provided at no cost. Some of those meds are extremely expensive and would surely strain normal family budgets. In practice, however, we function as out-patients. We are expected to stay near the hospital and travel back and forth each day. There are good reasons for this – less exposure to infection, better food, and much more exercise. But it is a demanding routine and a full time care giver is assumed. I have one, in house, and I virtually choke up thinking about how much she does and what I would ever do without her.

It goes without saying that the warmth and level of care from all the staff is as high as it could possibly be.

At home we are expected to monitor ourselves frequently, especially with respect to body temperature, and should anything untoward occur it generally takes about three minutes to get the on-call hematologist on the phone. There is a bed available at all times throughout the process, day and night. I know, because unfortunately I have needed one.

UNANTICIPATED

The transplant itself has gone smoothly, speedily and without significant side effects from chemotherapy. My blood levels reached a point this week sufficient to discharge me, exactly 2 weeks after transplant. To our dismay,  a completely unrelated problem has really knocked me for sixes.

Harry, the pharmacist on the Transplant Team, is a character, very upbeat and jocular. Always kidding around and raising patients’ spirits. We joust once in a while.

“So, the ladies down in ultra sound say the organs are fine but they’ve never seen a prostate as large as yours! ”

“Really? You must have heard wrong Harry. Are you sure they said ‘prostate’ ?

Alas, it’s true and I have a catheter to prove it. The condition is uncomfortable at the lowest end of the scale, relieved from time to time by a  procedure called “Liquid Manipulation”, administered  by Sandra, a most wonderful nurse with whom I have recently developed an intimate friendship.

 

Many men my age have some version of broken plumbing. One of the most famous and outspoken is the 19^th century Norwegian Expressionist, Edvard Munch, who I think really nailed it:

By 1892 Munch was feeling much more positive about life after prostate enlargement. Looking back at “The Scream” and what had so moved him at the time, he recorded a much gentler and more hopeful view than the moment captured on canvas. His words echoed through the following decades and were often quoted as encouragement to men suffering from this most stressful disorder:

“I was walking along a path with two friends – the sun was setting – suddenly the sky turned blood red – I paused, feeling exhausted, and leaned on the fence – there was blood and tongues of fire above the blue-black fjord and the city – my friends walked on, and I stood there trembling with anxiety – and I sensed an infinite scream passing through nature.”

I can so relate to that! Thanks Edvard.

I’ll likely be discharged after the weekend and return to the transplant clinic twice a week. I’ll have to deal with this unanticipated problem starting with my regular urologist in Perth. But best not to dwell on this. Let’s cross to the sunny side of the street.

Hopewell Ave. Ottawa – near Sunnyside

J&J

POSTSCRIPT

Speaking of artists, I have a friend and colleague at Riverguild Fine Crafts, the local cooperative in Perth, through which we’ve both sold our work over the last 30 years. Franc van Oort is a master printer (etchings), trained in the Netherlands. [portfolio]

Recently he’s been working on a truly wonderful series of large paintings called “New Lanark County Watercolours.”  (May 17 – 31)

VERNISSAGE AT THE RIVERGUILD

Thursday, May 17,  5 – 7 pm

If you are within shouting distance of Perth, try and go there for me.

I can’t make it myself – have to see my urologist.

Jackie

15. HOPEWELL

We are living with friends, Tony and Bobbie Jean, on “Hopewell” Avenue, just a few minutes from the Ottawa General. They are so kind. We met 33 years ago when our kids, who are all still friends, were at Playgroup together in Sharbot Lake.

 Around the corner from Hopewell is a kids’ park. Hard to resist a last rendez-vous with Ivan before transplant.

 

  DAY ZERO

I get my stem cells back. I can fairly hear my wee friends making their way through the byways of my innards to a now deserted marrow nestled in the Hobbit-like spaces of my bones: “Honey, I’m home!  …  Hey, where is everyone?”

The team warned us that the preservative mixed with the stem cells would cause my breath or pores to exude a smell I myself would not be able to detect but which would be apparent to those around me. Annoyingly so. It turned out to smell like sweet corn. When Tony returned from work he thought it was dinner on the go. Unable to produce any corn for dinner we opened doors and windows. I sucked on mints until bedtime.

 DAY ONE

The smell is mostly gone but my taste buds are tingling and, according to plan will soon take flight for a period of weeks or months. Damn. This happens because the effects of the toxins in the Malphalan, which began this procedure, begin to manifest in various ways. As the fast growing cells in the body realize they are mortally wounded they begin to dismantle themselves. That includes the cells in the mouth and all the way down the lining of the digestive system. All the way down. I’m not there yet. I have a few days’ honeymoon before the dam breaks.

OKAY, TOO MUCH INFORMATION.

LET’S SKIP A FEW DAYS.

This was supper for several days running. I can Ensure you it was a challenge.

DAY FIVE

Today, my white cell count bottomed to zero but I seem to have escaped, so far, the worst side effects. Except for a low level tummy rumble I feel pretty good. The doctor this morning was impressed. I might make the honour roll. If I can stave off infection for another week I should start to edge upwards and begin rebuilding.

AND FOR FUN …

My erudite chum, and master Windsor Chair maker David Ambrose, sent me packing off to Ottawa with a size Large historical novel: “A Man of Parts” by David Lodge. It’s an absorbing rendition of the mature years of the writer H.G.Wells, containing a roughly equal balance between his prodigious sexual adventures on the one hand and an exquisitely detailed history of the Fabian Society on the other. Not for the faint of heart, but so much more interesting than “War and Peace”.

 What I wholeheartedly do recommend, if you’re looking for some really good TV, is the fabulous BBC production of “State of Play” (2003). Kept us going for days in a row!

_________________________________________________________________________________

 On a final medical note, the stem cell team is trying to explain the reverse effect of the chemotherapy on my follicles. Apparently I’ve had a good hair day.

Love,

JACKIE & JONI

14. Taking the plunge …

My dad was an enthusiastic taker of pictures. In later years he used a Nikon SLR but when we were young his camera of choice was a Kodak stereoscopic model. Its two binocular lenses captured everything, amazingly, in 3-D. He was always jostling for the right photographic moment and angle, whether the shot was of us boys behind the ski boat up at Lake Simcoe, or of Buttons, our Boston Terrier, leaping over the floral clock at Niagara Falls, caught mid-air the instant before her surprising plunge into the unseen moat surrounding it.

Growing up in Toronto, the end of summer was always marked by a trip with Dad to the Canadian National Exhibition, which we simply called the “Ex”. The highlight of the Ex was the midway and the highlight of the midway, for all of us including him, was the roller coaster.

My memory of this is so vivid it gives me butterflies as I write. Dad made sure we sat in the front car. We climbed to the highest point of the rails, approaching the ultimate moment in time and space before that fearful, thrilling plunge. Hovering for a nanosecond  at the very peak was when he made his move. He stood up, got his picture of the crowds and the Toronto waterfront spread out before him, then sat back down just as the coaster gathered speed, we kids screaming in terror, me hanging on to my little brother Mark who I thought might slip from under the safety bar, and my carefree father grinning a satisfied grin.

I did not search for this memory, it came to me unbidden as I approach my final and strongest dose of chemicals a few days from now. It will be more toxic than I care to think about, designed to kill all the cells in my bone marrow, good ones and bad ones alike, plunging my immune system and blood counts to zero. 

“We’ve done this for 20 years” says the doctor. “It’s textbook. The descent will be dramatic and you will feel like crap but after a week or so you should level out and feel the stem cells doing their rescue work, pulling you back from the brink. Stay in Ottawa, close to the hospital, for about a month so we can check you each day until your blood counts stabilize. Then you can return home. In 6 to 12 months you’ll feel normal again, hopefully for years to come.” He grins a satisfied grin.

I feel like a little boy about to plunge. Fearful. Thrilled to think of the end of this ride.

PS:

I have felt well enough the last month to complete a firing which I unloaded early this week. It will be my last for quite a while and I will miss being able to do this.

Much harder, though, is not being able to see our grandson Ivan. It’s been more than a month now and we have been warned against being with kids, little germ factories that they are, for 2 to 3 months after treatment. We can Skype, but try doing that with someone who doesn’t really speak English yet.

PASSOVER

For the first time in our lives we spent Passover alone, without the extended family. Too much hugging and kissing and risk of infection. While we sorely missed the big Seder  we did manage to fashion a reasonable facsimile for ourselves, complete with gefilte fish as the appetizer (thank you Holly!).

_______________________________________________________________________________

Finally, I gave an interview recently which has just been published. You can read it, if you’re interested, at this link: theHumm Interview, April 2012

________________________________________________________________________________

EMAIL:   js@ripnet.com

13. A bump in the road …

My Stem Cell Transplant was scheduled for last week but is now delayed while I recover from a cough and cold. Bad timing, but far better before transplant than after.  Meantime, I’m waiting to get better, comfortably, and will let you all know as soon as we are rescheduled.

A WORD OF ADVICE … So far I have been spared the worst side effects of chemo: nausea, vomiting, mucositis, hair loss, and for the most part, except for one day, diarrhea.  In case of diarrhea the patient handbook advises the importance of “keeping your rectal area clean” and to “use zinc oxide cream to protect skin breakdown.”

Good advice, but remember, if you keep the zinc cream in the same drawer as the Sensodyne toothpaste, be aware that the tubes look similar and could be mistaken for each other. I can report that the zinc cream works well and is quite soothing; the Sensodyne, not so much.