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