Thursday, 30 January 2014

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. 

Saturday, 18 January 2014

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.

Sunday, 12 January 2014


 
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