"Intrathecal Pain Pump"

St. Paul's Hospital - Vancouver

As I write this post I am a patient in the Palliative Care Unit at St. Paul's Hospital in Vancouver. I was admitted on referral from the BC Cancer Agency earlier in July to be evaluated for the "intrathecal pain pump" which delivers prescribed medication directly to the pain receptors within the spinal canal.

The beauty of this type of system is that it can vastly reduce the amount of "systemic" medication required to achieve pain relief in my case of intractable pain.  Thankfully, the results of the initial studies were positive and I am now equipped with the indwelling portable pump.  The pump lives under my ribs on my lower left abdomen.  A catheter goes from the pump into the spinal canal.  The hope is that I will realize significant gains in quality of life while continuing to live at home with wheelchair mobility.

The pump itself is about the size of a hockey puck and it carries three different medicines in suspension together in the pump reservoir.  These medications can be topped up as required with a visit to the pain clinic back here at St. Paul's Hospital.  While my own personal system is not exactly as that shown, the following illustration gives the general idea of the system and its various parts.

I am just putting this up as a short post for now to let family and friends know about this new direction in my own cancer care journey.  I hope I can post more over the weeks and months ahead as I learn to live with this new piece of hardware and as I am able to reflect further on living well with cancer.

Peace and blessings...  Rob; in Vancouver

Proactive Palliative Care

I have decided to name this new stage of the cancer journey as "proactive palliative care".  This is to differentiate an active approach towards healing and wellbeing from what might be understood as a more passive response to disease progression.

P r o a c t i v e   P a l l i a t i v e   C a r e

  

Under the rubric of "proactive palliative care" I will continue to assertively engage in treatment options which reduce pain, prolong life, and otherwise keep me in good health through this stage, however long it may last!  

Palliative care (from Latin palliare, to cloak) is an area of healthcare that focuses on relieving and preventing the suffering of patients... Palliative medicine utilizes a multidisciplinary approach to patient care, relying on input from physicians, pharmacists, nurses, chaplains, social workers, psychologists, and other allied health professionals in formulating a plan of care to relieve suffering in all areas of a patient's life. This multidisciplinary approach allows the palliative care team to address physical, emotional, spiritual, and social concerns that arise with advanced illness.  Wikipedia 2012

Sacral Cementoplasty

I continue to be awed by the incredible array of technological innovation brought to bear in contemporary cancer care.  The most recent procedure I have undergone while a patient at the BC Cancer Agency Hospital is known as "Sacral Cementoplasty".  This radiological intervention involved the insertion, and radiological guidance, of a needle through the fracture plane of my sacrum beginning at the left sacroiliac joint.  A fast-acting plastic cement was injected through the needle upon its withdrawal to stabilize the fracture and reduce the pain.  

After two weeks I am happy to report that I have been virtually pain-free since the procedure, which is truly awesome!  As a measure of my pain level I am once again able to concentrate enough to read, which I was unable to do since shortly after Christmas.

For all of this, again, I am eternally grateful! 

Peace and blessings... Rob; in Vancouver

I am a Lost One in a Foreign Land...

There is little more to add this week.  I am working with the palliative care team to get the right mix of pain medicine.  This is an ongoing process which seems to be bearing some fruit.  I am, at least, emerging from the fog enough to write a cognizant paragraph or two.  Maybe not!

Companionship:
I am deeply grateful for the gift of companionship that has been shared with me at this time. This gift is given in so many ways.  The very word "companion" has always inspired me.  It's roots suggest a literal sharing of bread, "com - pan" with bread.  Much of the companionship I share these days is indeed "with bread".

I have many colleagues, family, and friends who live deeply with me through these days of my illness.  I am mindful of their presence, their compassion, and their love even though my illness has created this barrier.  Not a real, physical barrier, but one of sleepiness and immobility.

People ask, "Should we call?  Can we visit?  When are your "down times"?.    Well, for now, I still enjoy afternoon visits in the condo and Pam and I enjoy weekend visits, mostly at home.  Email is probably the best way to connect.  If that changes we will let you know.

We are NOT Alone.
I wrote at some point earlier in "A Cancer Journal" of the very "real presence" of those who break bread and walk with us in our times of trial ("We Are Not Alone").  it is equally true that many of those who have shared their lives and since died remain with us divine companionship.

One of my favourite living mentors is Joyce Rupp.  I share this short prayer as a reflection on my own inner geography at this time. It calls for a slow, prayerful reading, if you are lucky enough to find such space in your life.

Divine Companion,

there's an ache in my heart

that stretches like a canyon,

crying out for all the familiar

faces and places of yesterday.

All the tears of my loneliness

gather themselves together quietly;

a hollow sadness rises in my soul

and presses against my every moment.

I am a lost one in a foreign land,

an orphaned one without a home.

I am out of place and unsettled,

yearning for peace that hides from me.

My feet take me through each day

but the rest of me just drags along,

wondering if I will ever feel at home,

doubting if this path is right for me.

Ever-Abiding Life Giver,

be a source of hope for me this day

as I adjust to this great change.

Be a sparkle of joy in my spirit

as I struggle with the pain of farewell.

Be a strong connector of love for me

as I leave many treasured ones behind.

Consoling One of My Heart,

assure me with glimmers of peace

that this transition can be a source of growth.

Grant me hopeful eyes to see beyond today

to the time when joy will tumble freely.

Lift up my heart and comfort me. 

Joyce Rupp

Peace be with you...  Rob; in Vancouver

"Life is short.  And we do not have long to

gladden the hearts of those who walk the way with us.  

So let us be swift to love.  And let us make haste to show kindness." 

Henri Amiel

Bad News!

It is always difficult to be the bearer of bad news about ones own health.  But there you have it!  So here it is… 

A CT scan this past week has confirmed that cancer has returned to my sacrum.  While it comes as no great surprise, given the increasing pain lately, it still comes as a great disappointment.

The recovery I was enjoying over the Summer and early Fall included some of my best periods of health and energy I have enjoyed for the past three years.  Pam and I were even beginning to indulge in something we’ve rarely done over the past eight years, anticipating and planning for the future!  Alas!  Such dreaming is not yet to be.

The situation as it currently stands is that I am able to walk only very short distances. I have a wheelchair in the condo and am able to use it for short local outings (accompanied).  I am also limited in terms of how long I can sit upright.  For the most part my days are bed-ridden unless broken by an appointment of one type or another. 

Treatment Plan:

With the retirement of my Oncologist, Dr. Paul Klimo, from the Lion’s Gate Clinic, we have decided to consolidate my care at the BC Cancer Agency.  The Vancouver Centre of the BCCA is a comprehensive cancer care facility where I will have chemo, radiation, pain management, and palliative care all under one roof.  My new medical oncology team is Drs. Cheung and Albarack.  Pam and I met them on Wednesday and came away with a strong sense that whatever lies ahead, we will be well supported by compassionate and competent medical care.  

Over the next few weeks I will have another scan, a meeting with my radiation oncologist, a meeting with the pain management team and another appointment with Dr. Albarack.  By then we will have a pretty good idea of what sort of treatment options are, or are not, available to me at this stage. 

Visits:

Over the past years I have enjoyed frequent visits from a wide range of family, friends, and colleagues.  These visits have often included scenic walks in Stanley Park or along the Seawall; lunch dates, picnics, or movies; and great conversation.  Unfortunately, many of these activities are now precluded by my mobility and sitting limitations.

I would appreciate weekday visitors but we need to work around the parkade renovations, which currently subject my condo to a relentless 8-hr barrage of jackhammering.  The contractors do usually have a predictable break for about 45 minutes at 2:00pm.  So if you are interested in a short visit and that time slot works for you send me a note.

Wheelchair walks will be a possibility when the weather improves as well.

Peace and blessings... Rob; in Vancouver

"Life is short.  And we do not have long to

gladden the hearts of those who walk the way with us.  

So let us be swift to love.  And let us make haste to show kindness." 

Henri Amiel

Canada Remembers

 

11 - 11 - 11

World War I was finally brought to an end with the signing of an armistice on the 11th hour of the 11th day of the 11th month of 1918.  On November 11, 1918, 93 years ago, the "war to end all wars" was over. The 4 years of brutal fighting claimed over 20 million lives, about half of which were civilians, and brought an end to the German, Russian, Ottoman, and Austro-Hungarian Empires.

The Fallen

For 91 years we have marked November 11th as a day to remember those who have lost their lives in military service and to reflect on the continued presence of war in our world.   This year we particularly remember those Canadians who have died in action since last Remembrance Day.

Corporal Steve Martin
Corporal Yannick Scherrer
Bombardier Karl Manning
Master Corporal Francis Roy
Master Corporal Byron Greff
(from CBC "In the Line of Duty")

---------------------

They shall grow not old,

as we that are left grow old:

age shall not weary them,

nor the years condemn.

At the going down of the sun

and in the morning

we will remember them...

 Mount Royal Kantorei - The Kontakion - from Kantorei on Vimeo.

"Give rest unto your servants with your saints
O God, Give rest, Give rest.
Where there is neither pain nor sorrow
Neither sighing but life everlasting."

A Musical Blessing:  "Kontakion" by Rupert Lang 

Hope

And still, we long and pray for peace in our day...

  
Amabile Boys Choir (Canada)

1- 'Peace Drum Song', Will Schmid

'Peace, bring us peace. Peace, bring peace.

Feel the heartbeat. Peace, understanding, hope to all.

Bring peace, blessed peace'.
2- 'Oseh Shalom', traditional Jewish prayer.

'May the One who causes peace to reign

in the high heavens, have peace descend upon us

...and let us say: Amen'.

Lest we forget, Lest we forget...     Rob; in Vancouver

Rob on the Radio

Mark Forsythe - BC Almanac

Last week I was a guest on CBC Radio's noon hour show "BC Almanac", with host Mark Forsythe.  The topic of conversation was "The Language of Cancer", inspired in part by the recent cancer death of NDP leader Jack Layton.  We were particularly speaking about the use of "battle" type metaphors when referring to the cancer experience.

I was on-air for about 20 minutes.  The opening part is a conversation with Mark and the second half is a call-in format.  You can listen to the show at this link... Rob on CBC Almanac.  My piece starts at about 20:19 in the podcast.

It was a wonderful experience to be able to speak on a matter which is so close to my heart.  Mark is a skilled interviewer and an easy guy to have a conversation with.

Be well enough...  Rob; in Vancouver

"Use what language you will, 

you can never say anything but what you are." 

Ralph Waldo Emerson

Keeping Our Fingers Crossed!

Chemo Radiation Finished!

I've just finished the last of 25 treatments of radiation for a final delivered dose of 4500 centiGrays of absorbed radiation.  With the end of radiation I am also finished the side program of chemotherapy.  The radiation effects continue for the next several weeks but I should start feeling better tomorrow now that the daily chemo is finished.  My radiation oncologist says that now we "keep our fingers crossed".

Dr. Paul Klimo Retires

It is fitting that as I finish this last round of treatment my principal oncologist of the last seven years, Dr. Paul Klimo, works his last day.  He is moving into a very well earned retirement.  He will be missed by his many cancer patients on the Northshore and throughout BC.  I will personally miss him very much.  He has been a steady presence to me throughout this journey and I shall miss his compassionate and competent care.

Seven Year Journey

Here is a quick look at this cancer journey so far, by the numbers...

• 7 Years  of living with stage 4 colon cancer.
• 5 major operations involving about...
• 45 Hours of surgery, and...
• 100 Days and nights in hospital.
• 40 Treatments of radiation.
• 100 Weeks of chemotherapy.
• 6 Weeks of intense rehabilitative therapy.
• 5 Pet scans.
• 5 MRI and/or Bone scans.
• 10 Chest X-rays.
• 20 CT scans.
• 100+ Blood tests.
• 20+ Doctors: GPs, oncologists, surgeons, physiatrists, urologists, etc.
• 50+ Lab techs, radiation techs, physio-therapists, occupational therapists, etc.
• 200+ Nurses: chemo nurses, O/R nurses, homecare nurses, etc.
• 7 Years of living with cancer.
• 2,500 Days of prayer and hope.
• 60,000+ Hours of Living FULLY... with fingers crossed!

All I can say is "Thank God for Medi-care".  And Thank God for the awesome community of colleagues, family, and friends who have walked with us every step of the way.  I cannot imagine enduring the trials of this journey without you all.  Thank You. Thank You.  Thank You.

With the completion of this program I am now finished all of the treatments related to my most recent recurrence.  I will update this blog periodically as any new information becomes available.  But for now it is mostly a focus on recovery.  

The Underwear Affair 2011

Pam and I are again joining with others to participate in "The Underwear Affair".  This is a BC Cancer Foundation fund-raiser to raise funds and awareness for cancers that "hit below the belt".  "Bringing awareness to down there-ness" is the theme.  The options are a 10k run or a 5k walk.  Pam and I will be doing the 5k walk and are walking to raise a few thousand dollars between us.  Please sponsor either one of us with a donation if you are able to.

• Pam's Underwear Affair Page
• Rob's Underwear Affair Page

For information and pictures of last year's event click here.

Thank You!

Peace and blessings... Rob; in Vancouver

"Life is not a matter of holding good cards, but rather, 

of playing a bad hand well!" 

Robert Louis Stevenson

"The Underwear Affair" 2010

Still Some Work to Do...

I have been enjoying a time of convalescence at home since my discharge from G.F. Strong in mid-April.  With the holiday of Easter and a delightful visit from Robyn, Brandon, and baby Jordan, not to mention the reading of copious quantities of fiction, I have hardly found a moment to do any "blogging".  I have also been waiting for some definitive direction to be determined with respect to my ongoing cancer journey.  With such direction now clear it seems like a good time to issue a "health update".

Surgical Recovery and Mobility

I have continued to make great strides in my recovery from February's surgery.  I am now walking comfortably with one cane and able to cover 1-2 km. in an outing.  The pace is somewhat slower than I would like but is improving.  I hope to be able to walk in the 5 km "Underwear Affair" walk in late-July.  Or at least half of it.

All wounds associated with the surgery are now well healed.  There was a pesky little portion on my lower back that was slow to heal but is now fully closed and looking good.  My general, neuro-spinal, and plastic surgeon's are all very well pleased with my recovery thus far.

Cancer Status

One of the big questions of course is "what of the cancer?"  Did they get it all?

I must preface the answer to this question with the sober realization that there is rarely any "unambiguously good news" for the metastatic colon cancer survivor.  Most of the great gains I have made in this 7 year journey have been tempered by the reality that stage 4 colon cancer is a very slippery and persistent disease, recurrences are common.  A "wait and see" attitude is often prescribed.

That being said, the news form my surgery is very good indeed.  The goal of the surgery was to achieve a complete "en bloc" resection of the sacral tumour and all of the associated soft-tissue cancer with clear margins all around.  The pathology reports do indicate that this was achieved.  YEAH!

HOWEVER... some of the sacral margins are only "marginally clear".  There is a section along the right side of the sacrum where the cancer was within a few millimetres of the surgical margin.  My spinal surgeon was concerned about this and referred me to the radiation department.  The radiation oncologist explained that they tend to treat such margins as though they were "not clear".  They reviewed my previous (Oct. 2009) radiation report, CT scanned my pelvis, and concluded that a program of radiation would help to reduce the possibility of recurrences along the surgical margin in question.  They further advised that this particular radiation treatment was made more effective by the concurrent administration of chemotherapy with capcitabine (aka Xeloda).  My own oncologist has concurred with the recommendation of this approach.

Radiation and Chemo 

SO... I will begin a 5 week program of radiation and chemo this coming Wednesday, May 25.  The radiation will be the same dose I received back in 2009, administered over 25 treatment sessions rather than 15,  meaning a much lower daily dose.  Side-effects will include fatigue.

The chemo program is intended to augment the radiation.  Xeloda is an orally administered version of the standard colon cancer chemo drug fluorouracil or 5FU. I had this same drug back in 2007.  Side-effects include the standard nausea,  fatigue, and reduced blood counts as well hand/foot rashes and mouth sores with prolonged usage.

With both the radiation and the chemo, the side-effects are cumulative and tend to be worse in the later stages of the program.  If the chemo side-effects become too bad we will reduce or eliminate the chemo dose.

So basically I am hunkering down for 5 weeks of a daily grind of radiation and chemo.  With luck I will be finished before the July 1st, Canada Day weekend and free from there on to enjoy the great Canadian summer!

After that... we will "wait and see"...

TTFN... Rob; in Vancouver

"The dream of wellness sustained me throughout the reality of the treatment."

Vickie Girard

It's a Girl!

Jordan Jeanette Fentie  

b. March 31, 2011

7lbs 6oz

Mother and Daughter

Brandon, Robyn, and Jordan Jeanette

Jordan is derived from the Hebrew yarden (to flow down, descend). The name is that of the chief river of Palestine, in which Jesus was baptized. Jordan originated as a given name in the Middle Ages, being bestowed upon those baptized in holy water said to be taken from the Jordan River. Jordan was one of the top names on Robyn and Brandon's "Girl Names" list.  They settled on it after the birth seeing that it was the name that best fit their new baby.

Jeanette is a female name, a diminutive form of the name Jeanne. Other variations are Janette and Janet.  The name is derived from the Hebrew "God is gracious". Jeanette was chosen as a tribute to Grandmother's Jean and Janet.  What a great way to carry names and memories into the future!

Jordan was delivered at 12:08pm after Robyn and Brandon arrived at the hospital at 11:30am!  Phew!  What a close call!

Jordan Jeanette Fentie
b. March 31, 2011

___________________________

Weekend Pass

I'm home from the Rehab Hospital on a full weekend pass, which means I am able to stay home overnight on both Friday and Saturday nights.  What a treat to sleep in my own bed with Grandma!  

I continue to make good progress and am now maneuvering indoor spaces with the aid of one cane (right hand to support left leg).   I'm still using the 4-wheeled walker for outdoor strolling.   

I had visits with all three of my surgeons this past week (General, Plastic, and Neuro/Spinal).  They are all pleased with my progress and see no particular problems.  Next on the agenda is a visit to the Cancer Agency to determine more definitively if there is any residual cancer left in the sacrum and whether or not radiation is advisable if there is, or even if there isn't.  I'll also be following up with my regular oncologist.

I'm scheduled to finish my rehab program on April 19th.  I'll be home after that and following an ongoing physio regimen as an "out-patient".  My physio-therapist is setting up a program that will include work-outs at my local community centre.

That's all folks!

Rob; in Vancouver

"A new baby is like the beginning of all things - 

Wonder, Hope, a dream of possibilities."

Edna J. Le Shan

Rob in Rehab!

Greetings Family and Friends, Far and Wide!

In the past week I have been transferred from Vancouver General Hospital to G.F. Strong Rehab Centre.  This is a significant move and indicates that I am sufficiently healed from the surgery so as to be ready for a rehab program.  G.F. Strong is a residential rehabilitation facility where people, like myself, with spinal, neurological, muscular, or skeletal injuries go through intense therapy towards regaining as much function as possible.  Rehab programs may be from 6 weeks to 3 months depending on the nature of the injury.   

A look at my Thursday schedule will give you a snapshot view of the kind of rehab therapy that happens at G.F. Strong.

• 08:00  Breakfast
• 08:45  W.O.W. :  Walk on Ward (15 minutes)
• 09:30 Dressing Change and Doctor Consultation
• 10:00 Physio-Therapy (30 minutes)
• 10:30 Home visit with Occupational Therapist (2 hrs)
• 12:30 Lunch
• 13:00 Meeting with Social Worker (1hour)
• 15:00 Doctor Consultation (30 minutes)
• 15:30 Physio-Therapy (30 minutes)
• 17:00 Supper
• 17:30 Taoist Tai Chi (1 hour):  Optional Program

Thursday was a little busier than a typical day but it does give you an idea of the range of of activities and programs that I am engaged in.

The Rehab Centre is staffed by a wonderful team of therapists, nurses, doctors, social workers, dieticians, care aides, and support staff who work together in a well coordinated, integrated approach. I have both an Occupational Therapist and a Physio-Therapist who will work with me for about an hour each day during the course of my program. 

Whereas in many medical institutions you feel like an anonymous number, at G.F. Strong you feel like the staff are honestly getting to know you.  This "patient centered", personal, and holistic approach is essential if true healing and wellness are to be realized.  I feel very fortunate to have this type of rehabilitation available to me.

Getting Around

I took my first steps last week and have been walking for short distances with a walker every day.  I have significant "nerve pain" in my left leg which limits the amount of walking I can do at this time.  Yesterday I was only able to walk for 4 minutes before the pain in my calf did me in.    In the meantime I mostly get around in a wheelchair, in which I am becoming more proficient each day.  I am most grateful for the memories of my paraplegic Aunt Shirley McFeat who I am reminded of daily.

Home Visits

One great advantage to being at G.F. Strong is the benefit of being able to go on home visits.  I am home on a day pass today (Saturday) and will be home again tomorrow.  Next weekend I hope to be able to stay Saturday night at home as well!   What a delight it is to be home.  And so much easier for Pam too!  I hope to be able to come home each weekend while I am in the residential program.

Thank You!  Thank You!  Thank You!

Pam and the Girls and I can not say or do enough to express our thanks for the many cards, notes, prayers, and expressions of love and good will we have received from so many family, friends, and colleagues.  We truly do feel held in the midst of a large community of caring and support.

Peace and blessings... Rob; in Vancouver

“I wake each morning with the thrill of expectation 

and the joy of being alive. And I'm thankful for this day.” 

Angela L. Wozniak