Up Down Upside

I have a namesake.  Forrest Harland MacKay Kenny was born September 18.   This healthy boy is a brother to Sebastian and our two grandsons bring much joy.  Their parents are Sarah and Nate.  Our second daughter and husband, Bronwyn and Owen, are expecting their first child in mid-November.  Such wonderful event.

We had a family camping trip to Kicking Horse Campground in Yoho National Park in July.  This is a place with many memories of hiking and tenting for our family.  True confession:  Di and I stayed at Cathedral Mountain Lodge and simply crossed the road to our kids' campsites for dinners and campfires.  Nice!  We visited Takkakaw Falls and canoed on Emerald Lake, both wonderful opportunities to breathe mountain air!

My brother Dave was able to get in on a cancellation at Lake O'Hara, my favourite place in the world,
at the end of July.  This was a gift from my brother and sister and was a very special time.  We reminisced, canoed and had some wheelchair adventures on the paths.

I also enjoyed visits from dear friends from childhood, private school, university and medical school.  It was wonderful to re-connect.

The most recent MRI showed that the astrocytoma looks stable.  In any case, there was no growth.  I am currently on Avastin infusions every two weeks and this has allowed me to be more stable.  The temozolomide was stopped as it did not work.  I have significant weakness, some of which could be from the dex.  We are currently tapering the dose.  As well, the anti-convulsants are being increased.

As a medical residate said to me in June, "I am on a slow incline upwards."  ;)

Not good news

From my brother:

My Dearest Family and Friends,
As I have heard from so many of you expressing your love and concern for Hal and our family, it is becoming a little overwhelming trying to respond to you all in a way I wish I could. Therefore I am giving you all a summary of my perception of the status of my brother Hal's illness. I trust that you will understand if I do not respond to individual emails as I simply cannot keep up with all of the correspondence from everyone. I have written below a brief synopsis of where he’s at right now. It is healing for me to put words to my experience on this journey, for Hal’s journey is, at least in part, my journey.

As most of you are aware, last November Hal was in Vancouver to receive the award for Alberta's Outstanding Family Physician. Three days before the award ceremony he had a seizure and a few days later came the grave diagnosis: a grade III Anaplastic Astrocytoma - an aggressive, inoperable tumor intersecting three lobes of his brain. The prognosis was grim. With no treatment, he would live an estimated three-four months; with aggressive radiation and chemotherapy, one-three years, and with a miracle, longer.

For the past six months I have traveled, at least to a degree, with Hal through the radiation, chemotherapy and steroid journey: nausea, diarrhea, itching rashes, headaches, seizures, and so little energy that putting his feet on the floor in the morning can be called success. And then there are the symptoms resulting from the tumor itself: aphasia, memory loss, and more severe headaches. The MRI about two months ago showed that the tumor was stable, meaning the chemo and radiation had stopped its growth. This was good news at the time and beyond what was originally expected for that point in his treatment.

In the past two weeks, however, Hal has had symptoms of weakness in the right side of his body, which are going beyond the side effects of the chemotherapy. His most recent MRI this week did not present us with good news. It showed that the tumor is again growing, which means that he is no longer responding to the chemo. His alternative now is to try a drug called Avistan, which, I understand, is still in the experimental stage in the treatment of brain tumors. It is not chemotherapy (in that it is not meant to break down tumors) but instead somehow attacks the blood vessels of the tumor, preventing it from growing. While very costly, he is going to try four treatments. Apparently 20% of brain tumor patients of his type respond positively to this approach, so we are expecting good things and will know by the end of the summer if Avistan will help him.

Hal is settling in to the reality of his situation. He is handling the whole thing with grace and courage, as he has done so the entire past seven months. In addition to his amazing wife, Dianne, Hal’s wonderful children are also giving him strength on this journey. Sarah and Nate are expecting their second child in September and Brody has been working on photo projects with Hal.  Bronwyn is expecting her first child and due to give birth in November. Bronwyn and Owen have so wanted a baby for some time. Hal’s goal now is to live long enough to his see this grandchild. If he lives longer, he will gratefully accept the gift.

On behalf of our family, I thank you for your love, your patience, and your prayers during these most challenging and difficult times. This whole experience has shown how hugely unjust and unfair that a person of Hal’s character and stature would have to bear this kind of hell during the last months of his life. It is awful that a person who has given so much of their life to others is faced with such anguish in the last chapter of their own life. In the midst of my grief, one spark of solace in this experience is to witness how all that Hal has given to others is coming back to him - from the community that cherishes him. The love that has so freely flowed through him in his life and in his work as a healer in his community now surrounds him. As I observe this I am inspired. May we each know such love that returns to us from others through service to others.

As a student on this journey with Hal, one of my lessons is to embrace uncertainty as a part of life (for a longer list of some of my other learnings, see: http://conta.cc/1lWwUPj )
Uncertainty has been an essential ingredient in this whole experience. My willingness to accept this has enabled me to find a degree of peace, as I learn to be more fully present to what surrounds me now, rather than to indulge in my fears about the future. The more uncertain things seem to be, the more security I am discovering. One of Hal's challenges, over the remaining time of his life, as he embraces the reality of his impending death, will be not to let the prospect of dying get in the way of fully living the time he has left. Perhaps this is a challenge we all face.

With love,

Dave

Dexamethazone

Dexamethazone.  I've been on at least a medium dose since November.  Any lower dose I have trouble.  I really wasn't having any side effects.  I started wearing sweat pants in mid-March as they were more comfortable.  I'm down ten pounds but I need to buy new pants for brother-in-law's wedding.  Turns out my waist size has increased four inches.  Dexamethazone.

I have had weakness with right my hand and foot which has come on since last month.  My next MRI is tomorrow and next oncology appointment is Tuesday so hopefully will get some insight as to what is causing this.

Hoping for the best,
Hal

Spring Sprint

The Brain Tumour Foundation of Canada held their annual Spring Sprint fundraiser in sixteen cities across Canada recently.  The walk or fun-run aims to raise funds to transform the future for brain tumour patients and families.  Thanks to the efforts of our three children, Sarah, Bronwyn and Brody, we participated in both Team Hal Edmonton May 31 and Team Hal Calgary June 8.  The t-shirts said "Hal's Angels"!  Both events had gorgeous weather and were a celebration with family, friends and colleagues in support of Hal.  We were overwhelmed and so grateful.  It was the best thing for our family as it made us part of the bigger picture.  It continues to boggle the mind that 27 Canadians are diagnosed every day with brain tumours.

We are happy to announce there are two baby bumps in our family.  Sarah and Nathan are due September 26 with a sibling for Sebastian.  Bronwyn and Owen are due November 16 with their first child.

I had a great time sorting hundreds of my Dad's slides with my brother Dave and sister Kate.  It was a walk down memory lane with my sibs and we had lots of laughs.

I have an MRI June 21 then begin my 5th round of adjuvant chemo June 24.  I anticipate taking the full dose of Temozolomide this time as this dose at 75% has gone quite well.  Fatigue and weakness continue to be daily challenges.  Most days I am able to do some walking and enjoy the sunshine.

Some of Team Hal Calgary 

Photographs

 

It has been six weeks since my last entry.  I had planned on blogging once or twice a week!

I was hospitalized for a week in April.  Since then I have been getting better, although I have proximal weakness.  My well being is probably because of the dexamethazone.  My limbs are getting skinny but my belly is growing!  You can check it out:
https://www.flickr.com/photos/halirvine/13928874128/
 
The aphasia seems to be different from what it was before the March 2nd seizures.  My reading, speech and writing abilities are limited.  I'm thankful Di can help me with this.  I feel like what I have in my head to say is correct, but what comes out isn't!

Photography and working with images continues to be a rewarding activity for me.  I am currently digitalizing my slides as well as some of my father's.  I had a nice walk down memory lane with my two siblings sorting our father's many slides last weekend.

Di & I just celebrated our fortieth wedding anniversary.

The Brain Tumour Foundation of Canada organizes their major fundraiser, Spring Sprint, all across Canada and we hope to be in Edmonton for the May 31st event and Calgary for the June 8th event.  Team Hal has been organized by our children.  Rest assured I won't be sprinting!  It is actually a 2.5km/5km fun run/walk.  I am planning to wheel along beside my two year old grandson!

I appreciate hearing from you and your friendship and support mean so very much to me.
Hal

ICU (a second time)

I was good  for the rest of February and had a great day on March 1 at the Rimrock Hotel.  I received the Alberta Family Physician of the Year Award early in the morning (all of my family were there for the presentation which was very special) and all of us then went on to  the Banff Springs for brunch.
Then I woke up at home the morning of March 2 feeling very unwell and had a seizure, followed by one more at Sundre Hospital and two more as Stars was landing at FH.  I ended up in ICU intubated.  I also started the first higher dose of temozolomine while in ICU - so was not sure if I was feeling bad from the seizures, the temozolomine or from the anti-epileptic medication.  I was discharged home Friday, March 7.  So I have been with constipation (from temozolomine), diarrhea (from Keppra), a lot of fatigue, some weakness, continuing nausea and no appetite as well as poor speech and word finding.
I have appointments at TBCC Thursday and Friday of this week and I hope medication changes will deal with most of the problems!
I will be in touch once I am feeling better.
Hal

Pet Therapy

How a week makes a difference!

The itchy rash resolved - so it was likely from Septra.  I did follow through with an appointment with Dr. Hanson, an epileptologist (is that a word?).  While the rash was unlikely due to Keppra I can likely get by with a lower dose.  I have had some diarrhea and my mood has been a bit more depressed - both of these could be contributed to by the Keppra.  So I am weaning that dose.

The kids were home for the Family Day Weekend, and the Edmonton kids brought Dezi home - they were looking after her while we were in Calgary for radiation therapy.  I thought she would need some time to get familiar with Sundre but she has settled in to home like she never left.  It is great to have her around, and she is a perfect nap companion.  

I have more energy as the effects of the radiation resolve, but I still run out of steam pretty quickly.  Also as physical energy improves I am aware of some more depressed mood at times.  So this journey continues up and down from day to day.

Invalid Time

My last blog January 30 was so positive!  I was done with radiation and feeling better after increasing dexamethasone.  Well, the positive feeling was short-lived!  Lots of up and down feelings over the last 2 weeks have reminded me that side effects of radiation continue to keep getting worse for 2 - 3 weeks and then start to improve.  Di tells me I should accept that this is my invalid time, but it is hard to accept 16 sleep hour days and being non-functional when I'm awake.

Also I have been coping with an itchy rash for 10 days which is certainly medication related, but it is a challenge to figure out what medication is the culprit and how to best treat it.

However, it is not all negative.  Yesterday I had an uplifing visit with Dr. Bob Lee, one of my mentors from medical school.  Bob is still physical with skiing and still creating fabulous photography images.  Bob was part of the 1986 Canadian expedition to Everest and his photographs from that expedition remain inspiring, along all his photographs from the Kananaskis and all around the world.

So not much to do right now except ride out the ups and downs for now and look for feeling better down the road.

Tea.  Floral Jasmine Green Tea.  Heaven!

Day 89 of this adventure.  It has been essentially 3 months already...

30th RT done yesterday!  Not without some drama:  a problem with the cooling system across the entire RT system, so everything was shut down (I was in the treatment room, mask on, when everything was closed down).  Lots of re-booking of appointments.  But I didn't want to come again for my last treatment, so I waited 2 hours and finished treatments!

HOORAY I'M DONE RADIATION TREATMENTS!

Lots of people have commented on how quickly the 7 weeks flew past - but not for me - it was an excruciating long 7 weeks.  So good to be home and I can schedule my own time! 

To deal with the boredom mainly I will be using photography and music (both are creative and neither needs words).  I can come and to go either as I feel.  And Di is willing to try giving me piano lessons! 

Today I'm feeling the best I've felt for about a week after upping my dexamethasone dose to 2 mg a day yesterday.  I was trying to wean the dose to 0.5mg daily, but getting increasing headache and fatigue.  I discussed is with the RT nurse and increased the dose after she conferred with the radiation oncologist.  I'm feeling miraculously better than I was and am actually functional part of the day.

So settling in to HOME.  Lots of projects to keep me as busy as I can be.  The challenge is to deal with my limits, but today is better than yesterday, so I am there. 

Routine life is full of routines, like washing the dishes.

My brother finds it refreshing to spend time with me because I live in the present.  My routine revolves around the next radiation treatment and that is far as I can plan, because I won't know how I will feel, and the next appointment is only confirmed the day before.  The RT appointment determines when I eat, when I take my meds, and when I do most things.

So living in the present is "refreshing".  I don't have depression from living in the past, and I don't have anxiety from living in the future.  And I'm not living too busy - like my sister who has asked to us to call within a 15 minute window between when she is driving between appointments about her fractured shoulder from biking in too much of a hurry.  

So I should be at peace!

But I'm bored.  I think boredom is my current big challenge. 

I feel limited in so many ways: I can't drive, I can"t read or listen except to the simplest stuff because of comprehension issues, I can't talk or write because of expression issues (these little blogs are a 1 - 2 day project).  I can't participate with conversations about medical care / policies (which I had planned to do in semi-retirement).  I can't realistically return to part-time work.

My main hobby is photography (motorcycling is out) - but is limited by fatigue and time organized around my RT times.

So finding things to do within my limits is my current big challenge to fight the boredom.

 

Brain Exercise

After frenetic and wonderful holiday times with family and friends, we are settling in to routine around treatments.

Monday (January 6) I saw Dr. Sutherland (my neurosurgeon) and he gave us an encouraging opinion: I am obviously responding to treatment because I am clinically the same or better than when I left hospital.  If I was not responding to treatment I would be much clinically worse.

For the most part I am feeling ok.  While I rarely feel well, I rarely feel very unwell either.

Radiation treatment side effects start 2 – 3 weeks after initial treatment and are expected to gradually get worse until about 2 weeks after treatments finish.  I compare radiation treatment to sunburn (which is an effect of radiation exposure): Day 1 isn’t too bad, but days 2 – 4 can be nasty.

Radiation treatment causes some skin irritation and “patchy” hair loss, brain inflammation and swelling causes headache, nausea and fatigue.  I have minimal headache and nausea and minimal skin irritation, and I seem to have some patches of smooth scalp where hair is not growing.  Fatigue is my thing and I’m starting to understand the difference between “brain fatigue” which is helped by brain rest or a walk, and physical exhaustion which is helped by sleep (10 – 12 hours overnight and 1 – 3 hours of naps).  My “brain fatigue” comes after 20 – 30 minutes of brain activity: reading, writing, puzzles – then I feel like I can’t think.  I’m trying to balance brain rest (concussion research shows this is important in brain healing after injury) and brain exercise (which is important after brain injury to allow the plastic effect of neurons and connections to change to improve brain function).

Now I am going to get technical about how radiation and chemotherapy works, at least as my simple mind understands it.

Radiation (the kind I’m getting is focused photons) effects water to create radical ions which causes oxygenation damage to cells (mainly through DNA damage).  This is why they steer us away from taking anti-oxidants during treatment.  While anti-oxidants are quite helpful for preventing cell / DNA damage, cancer and slow aging in healthy people, it works against the radiation-induced damage, and can hinder its beneficial effects.  The improvement in radiation therapy over the years has been massive; they don’t just put you in a room with a pot of radium or cobalt any more.  Every RT machine is a mini linear accelerator that makes the radiation rays. Technicians can then target the tumor in 3D and avoid healthy tissues with tolerations of ~3mm.  Cool way more positive effects and minimal bad effects.

Temozolomide is a fairly new drug that I’m taking for chemotherapy.  It is a small molecule, that is absorbed well orally or IV, and also breachs the blood/brain barrier and is taken up into neural tissue.  It targets one of the proteins that cells use to help them repair DNA damage (gene specific stuff).  So it works well together with radiotherapy and is now first line treatment of gliomas.

While the research on temozolomide shows median survival increases to only 14 months from 12 months, the experience is new with this drug, and it seems to open a window for long term survival.

There is also some research on novel treatments involving viruses and vaccines.

All in the future is not bright, but neither is it dark.

Hal

 December 22, 2013

Even though our apartment in Kensington is cozy and perfect for our time in Calgary, it was wonderful to get home for the weekend.  Coming into Sundre, I don't remember ever having so much snow.  But we arrived home to our road ploughed, sidewalk and driveway shoveled clear, and evidence of an elf infestation in the house: wreaths, Christmas florals, decorations, and gifts!  We are so blessed with such great friends!
So for the 7 RT (out of 30) treatments have gone smooth.  The first day I did acute nausea and vomiting after the treatment, because I figured I wouldn't need the Stemetil before treatment and I didn't have anything to eat right after treatment which had been advised.  I did that only once!
Some fatigue / poor stamina are the main side effects, and the ongoing frustrating anomia aphasia - although Di tells me I'm improving, but she has to proof read my emails before I send them!
We are planning to stay with the kids in Edmonton Dec 25 and 26.  Christmas will be a wonderful time.
May the approaching light of the new year shine on a better year in 2014!
All the best,
Hal

December 9, 2013:

Better shave than deal with patchy hair loss!

I want to let everyone know that I am doing well and looking forward to the next phase of this adventure with an astocytoma.
Treatment with radiation and temozolomide starts on Thursday.  We have rented a small apartment in Kensington for the 6 weeks of treatment so we won't have to worry about traveling back and forth to the city.  This will also make it easier visiting with friends who are in the city (if I'm feeling up to it).  Kensington is a great neighbourhood to stay in - funky shops and easy access to the river walking path.
I am overwhelmed by the amount of support and love flowing from friends, community of Sundre, and the medical community across the country.  Being a patient and receiving so much  support, and from at times unexpected places, makes me realize how everyone has been touched by cancer in one way or another.  Certainly I'm not alone in facing this challenge, and the great amount of support lets me know that I am experiencing a very human thing and restores my faith in humanity.
Hal

November 24, 2013

So how it starts:
 
I was in Vancouver to attend the GPA Update, to receive for the Alberta Family Physician of the Year award, and attend the CFPC FMF.  I had a generalized seizure that was rewarded with a guest stay in the St. Paul's Hospital ICU and has resulted with a "mild" but very frustrating receptive and expressive dysphasia / aphasia.  So I can't continue with committee or clinical work in the forseeable future.
The cause is a high grade anaplastic astrocytoma.  I  will be starting radiotherapy and temozolomide in a couple of weeks.
The output of love and support has been incredible (another benefit of rural practice) and I appreciate so much the supportive messages from colleagues across the country.
I'm looking forward to catching up with people at  Alberta Fitness, Fun and Facts at the end of February, and the R&R in Banff at the end of March.
My thoughts of support go to the BCGPAs with their current challenges.
Hal


Hal Irvine BSc MD FCFP
Rural Family Physician - Anesthesiologist
Clinical Associate Professor
Department of Family Medicine
University of Calgary

P.O. Box 1159                                          #17 The Graine
Sundre, AB, Canada  T0M 1X0                1106 - Seventh Street
                                                                 Nelson, BC, Canada  V1L 0A1