Kids in the Hall

Well my kids were in the halls of the Cancer Lodge this last weekend, and I think everyone really enjoyed having them around.
For the older folks the two younger boys were like bringing puppies into a retirement complex. Coleman and Hannah were much admired and Coleman was very impressive with the way he could really slam those pool balls into their pockets with such confidence in the common room. Hannah with her quiet grace simply was just that.
Thank you Lynn for bringing everyone together for the weekend.
Within the Lodge there is a special room called the listening room. There's a large water feature that quietly trickles in the corner and the furnishings are simple, the room soft and spacious. While Joanne and I had the whole family together (along with and thanks to our wonderful Lynn) we thought it would be a good time to circle up in the Listening Room and give everyone a chance to express what they were feeling.
With the lights dimmed I took Joanne's stringy silk scarf and we all knelt around it; just close enough to touch. I started speaking to my kids telling them about my disease and that I was strong and I would never give up on them. Looking at each person I told them how I loved them and I would always be strong for them.
when we took turns talking we would creep a little closer to each other in the circle, and after each person spoke I would take their hands and we would put our foreheads together and cry a little, tears falling on Joanne's scarf. While My head was against each of my children's heads I would tell them how strong and beautiful they were and that I was going to be O.K.
After everyone had spoken all of our knees were touching and we all put our heads together, leaning over the cloth and it formed this small human shelter over the piece of fabric that had been catching out tears. I talked about it being like a house and how as a family we would always form a strong house.
Louis then banged a gong to clear the air and Lynn chanted Om, Tare, tu Tare, tura so ha which is a healing chant. We all joined in and repeated it many times.

Everyone felt much better, and we each took turns cutting pieces of the crying scarf to keep as medicine.
A thread came off Sef's piece of scarf soon after he cut it and he tossed it over the balcony into the wind. He said he gave a little prayer with it as it fell to the ground. As it should be : with every thread lost to the wind goes a prayer that our family, heads and spirits together, backs forming the frame of our little house, will weather this storm and many others after.

I'm very proud of my family for the bravery and love they showed that day.
Joanne has lots of scarf left for anyone who would like a piece

anyone interested in donating bone marrow could check out
www.onematch.ca
thanks.

On my moon

Well it was the harvest moon a couple of days ago, so it seems fitting that I had to give up a bit more blood to the Labtech people in labland yesterday. Could have been the gravitational pull from that large glowing orb that kept the needle point spot in my arm bleeding for hours afterward. A small nosebleed and bleeding from my gums are two more gross details of my day yesterday.
Dr Shepherd prescribed vitamin K supplements to help coagulation. Little vials of liquid drawn up into a needle and squirted into the back of my mouth (needle removed thanks). The pharmacist gave us the choice of using the vitamin K usually reserved for dogs who have ingested rat poison or this other mysterious stuff in a glass vial. I've always enjoyed a good mystery.
I'm not bleeding anymore after a couple of doses,but I can't help but wonder what in the world is going on inside me.

I think the health system should have a different scale of evaluating how their patients are doing;
Often I'm asked how's my discomfort level on a scale of one to ten. Maybe they should develop "The Seven Dwarfs" scale of well being,'cause I was feeling like at least 4 of the seven yesterday. Especially Grumpy in Joanne's loving opinion. Sleepy Sneezy Dopey, and I did go to see Doc. Definitely not bashful, as I tend to be a bit of a loose canon when I'm low on hemoglobin.
Maybe there was another dwarf that never made it past the Disney Editing Staff. Horny. But then,If I followed through on his personality trait I'd have a lot of explaining to do when questioned about where those bruises came from.
On a COMPLETELY different note:
Joanne and I had a wonderful experience with a 78 year old "energy worker"named Bett this morning.
It was a meditation/gentle massage experience that left us both feeling quite calm and well. This woman was amazing with all of her healing experience and wisdom. She does regular appointments at the cancer lodge, and we'll definitely see her again.
Instead of coming at me with needles, beeping machines and crisply trimmed moustaches, she had warm hands soothing sounds and sensitivity. What a relief.
The Doctors will let us know on Monday If I can go back to Salt Spring for a while. I'll be hoping for a marrow match on the international registry, which could take a couple of months, apparently.

Thanks to everyone for the contact and generosity. Thanks Chad Thompson for the leather medicine bag.
Feelin' the Love.

I've had a few visitors since my last entry, and have spent some time back on Salt Spring. My sister Wendy and her husband Don came out to the island and, although I have a touch of leukemia, I still wanted to show them the Saturday Market and at least point them in the direction of the wineries and the viewpoint at the top of Mount Maxwell. I wasn't always the tour guide, mainly because I tire easily . I think they were most impressed with Mike's showroom and garden.
The day they were leaving Joanne and I noticed a huge bruise on my elbow and small red bruise patches in various places on my skin. Joanne called into the hospital in Vancouver- although I had been stable two days before, my blood platelets were diving off and my hemoglobin count was down. So we tagged along to Vancouver with Wendy and Don to get me topped up with another transfusion.
The trouble is, my bone marrow just isn't making enough blood. I'm like and old engine that's burning oil. Don (who's a mechanic) mentioned that a dipstick would be handy, and, having worked with one in the Kootenays, I readily agreed.
(Sorry Cam, I couldn't resist}
Don and Wendy were really fantastic, it's great to reconnect after all these years. I was pleased to find that Don, after travelling on the ferry and inspecting the" Spirit of British Columbia's docking procedure, came away without losing any more fingers. Wendy was very loving and generous, but it was Don's parting words that really struck a chord..."Just relax". Few words well timed.

Being low on hemoglobin is sort of like being drunk at a Mormon barbecue. Every one is sober and you're getting maudlin and making rash comments about lingerie. I'll get teary about not having my shoelaces the same tightness. When I'm out in public surrounded by blushing and embarrassed family members I know it's time for a couple of pints of red.
I have a good appetite for whatever's on the grill and I'm not in any pain.
Being low on platelets is like having skin as thin as a ripe Bartlet pear, and I shouldn't pick my nose for fear of non stop bleeding. (a hard thing for a carpenter to resist when alone in the elevator) I should also avoid sharp objects like any woodworking tool ever made. I also can't fly in an airplane for fear of spontaneous bleeding. Other passengers are kinda put off by that sort of thing.
Being low on white blood cells means I'm susceptible to infection and should avoid crowds and babies. Crowds OF babies handling money would probably be the worst, so I guess no more Salt Spring Saturday markets for me!

My Mom Louise and Stepfather Jim have been in Vancouver visiting for a few days; they've been absolutely lovely and have been very brave sharing the Cancer Lodge cafeteria food with me. (which really isn't that bad once you recognise the creativity that goes into the soup de jour) .

Now to explain the butterflies:
Well it's all metaphorical of course: Up until now I've been going through life like a solitary determined caterpillar; Fairly thick skinned and unemotional, doing my daily task munching away at what i thought was my leafy life.
Then Life stands still where I am now at the chrysalis stage, where a thin skinned and emotional Brian is quietly developing.
Sometimes I tear up when Joanne tells me of the generosity of people I hardly know but who love our family enough to help out. Jo Jo says it's because I've made an impression through the work I did or the way I did it. Truth is I've always loved what I did and never really thought much beyond that. It's definitely not all about me; as a family we're a unit and it's been Joanne who has made most of the emotional connections .
I'm starting to understand how to let people in, and I'm looking forward to reconnection time. There's a Neil Young song that says one of these days he's going to sit down and write a long letter...well I guess this is my long letter. My cocoon is a time of change and waiting, and I find myself quietly weeping from all of the unexpected love and generosity shown by others. When Joanne looks at me her eyes are like titanium blue rods that go right through to her titanium blue shoes. She has the strength of the ancients to help our family through this. Her love is what wraps my chrysalis.

I will survive this thing.

All gallows humour aside, It's a fucking scary and strangely wonderful ride.
The Blue Morpho butterfly is me; at the end of this journey.

Thank you to everyone for helping us out.

Dr. Barclay

Here's a short document that definitely does not prevaricate about the bush.
I Like Dr.Barclay. He reminds me of an old horse Doctor. I'll be seeing him again tomorrow.

click on image to enlarge

This is our big hairy black thing. There's a new fire hydrant soon to be a little less pristine.

My life as a dog:

Nothing much happened today: I ate, went for a walk, napped quite a bit. Wondered about dinner, Joanne gave me a nice back scratch. A perfect day really.
The big news is Charlie and Ali had a little boy born at 6;15 pm Alberta time. A little brother to Liam.
I'll get more details posted as they come in. Very exciting. Wow.
I had some blood work done today and my hemoglobin is down a bit to 93, neutrophils also down to 0.4., platelets @ 21.

A huge thank you to everyone who is helping with meals these days. Like a dog, sometimes I'm not sure where the food comes from, but I sure do appreciate it!

Well it's time for me to turn about three circles, humph down into bed and chase a few rabbits.

Monday September 08

I spent Sunday with Joanne Coleman and Hannah In Vancouver. My ol' bossy friend Cam Mathieson was in Vancouver for a visit too, so he got his buddy (and my Milk River Canoeing Companion) Andy to drive us around the city a bit. Driving around with Andy and Cam is like seeing the sites with a Vegas comedy team. Lots of fun and much appreciated.

We saw Andy's art Gallery and went out for lunch. Some clothes shopping for Coleman and the rest of us sort of tagging along, enjoying the downtown scene and feeling vaguely out of place in some very hip stores for the youth of today.
Then oooo, by jiggers wouldn't you know it , Brian's darned biopsy site started weeping through the bandage.
Joanne and I had to head back to the hospital to have that changed and have more blood work done to determine if we should go home to Salt Spring. It all turned out O.K. and I blamed it on the Vancouver potholes and Andy's back alley driving.
We saw the house that Hannah will be staying at while dancing at the Arts Umbrella this year. Very nice. Modern with lots of post war wooden trim at the same time. She's going to have a great year I just Know it
We made it back to Salt Spring Last night. Very good to be home. We're in a watch and wait mode; getting blood work done on a regular basis and taking care of all the paper work. The House was very clean thanks to Pam and her amazing Crew, the dog was very happy and flee free thanks to Lynn and Mike and everything was as it should be thanks to everyone.
I should find out soon If my brother Al is a stem cell match.
more postings to come.
Thanks Gary for helping to set this up!

Nurse Charlie

I can;t believe the level of fine experienced staff they have here at the Cancer Clinic!
I never know what's going to happen around each corner
carpediem!

Nurse Charlie

Saturday September 06/08

My daughter Hannah and Son Coleman are in Vancouver today: I haven't seen Coleman since initially going to Victoria over two weeks ago! It looks like He's working on a moustache! Hannah will be going to the Arts Umbrella on Granville Island this year, so she's setting up a place to stay with a family who's billeting her. Very nice to see both of the teens.
I'm feeling well today, after a bit of a dissappointing day yesterday. No marrow matches found yet.
To marrow, to marrow, there's always to marrow.... yeesh,
Cam, my bossy friend from Nelson should be here today too, and we'll all likely go out for dinner. I'll post a picture of one of the lamps that Cam made and one of Nurse Charlie who's now back in Sylvan Lake where He and Ali and Liam are expecting a wee baby soon./Users/hairydog/Pictures/iPhoto Library/Modified/2008/29-Aug-08/200808292154.jpg/Users/hairydog/Pictures/iPhoto Library/Originals/2008/24-Jul-08_3/IMG_1694_4.JPG

After Victoria

I was transferred to Vancouver general hospital where, after a few days and one blood transfusion, I underwent another bone marrow biopsy.

This time I was given a platelet transfusion at the same time along with a little morphine and just a sprinkling of ativan.  I was still gripping the bloodstone Laura gave me pretty tight, 'cause when you feel the suction of the marrow going out of you there's no freezing or morphine that numbs the pain.  Thanks Joanne for holding my hand.

Sept. 05:

I found out today that of the four brothers and sisters that have had blood tests none of them matched for a transplant.  My brother Al is in Hawaii and still has to have his blood work done.

It's the leukemia lottery.

If Al doesn't match then there's a vast registry of potential doners who may match.

Dr Shepperd told us that the leukemia in my marrow remained stable so Joanne and I will be heading back to Salt Spring Island on Monday.  I'll have my blood tested three times a week and wait for word from Vancouver as to what the next step will be.  If I spike a fever or start bleeding for any reason then I'll be back at Vancouver General. If I need another blood transfusion then I will likely have that done in Victoria.

The waiting is a little unnerving, but I'm just going to look at each day straight on and make the most of things.  Tell my kids how much I love them and appreciate every moment.

I told my brother Charlie today that it's sort of like driving along a long stretch of highway, looking at the dashboard and noticing that you're way past empty on gas.  You really start to appreciate every telephone pole or fence post you get past before you have to push the damn truck to the gas station.

I just don't know where the next gas station is.

Thanks to everyone for their support today

An introduction to the blog... and the story

I've decided to start this blog to help keep my friends & family updated as to how things are progressing since being diagnosed with MDS/AML Myelodysplastic syndrome/ Acute myelo leukemia. MDS Leads to AML, right now I'm borderline AML and waiting for some test results from my second bone marrow biopsy.

I work for Hans Hazenboom as a finish carpenter and while working in his shop I nicked my finger on the tooth of a saw blade while building some cabinets. No big deal, just flush out any debris, put a band aid on and go back to work.

But this little wound was taking forever to heal and developed a bit of an inflammation/infection. I had also noticed that my legs were getting very bruised up; at the time I had been doing quite a bit of yard work and didn't think too much of it... just banging around in a drainage trench and cutting firewood for the winter. One day I was picking blackberries with my son Louis and got poked by a thorn right in the center of one of the bruises on my calf . I didn't really pay any attention to that until ,while working in my shop, I noticed a
steady trickle of blood down my leg and onto the shop floor.

Very strange, but I've always been one to rationalize what seem to be small things like that. The bruise was full of blood, so that pressure is all that was causing this bleeding. Simple!
A couple of days later at work the finger that was nicked by the saw blade was sore and swollen and towards the end of the day i noticed a red streak forming on the back of my hand.

Uh Oh, blood poisoning, I thought and quit work a little early to have it checked out at The Lady Minto. The doctor gave me a prescription for cellulitis and asked if my lymph glands felt swollen under my arms. I told him no, but noticed a bruise on my wrist and let him know that it seemed like I had been getting a lot of bruises lately. I showed him one of the big purple bruised on my legs and he scheduled me for blood work the next day, telling me to take a couple of days off.
The next day after the blood tests things started to happen very fast. My GP gave me a call in the morning to come and see him after lunch and then called right back to see me as soon as possible. Not good.

He let me know what his suspicions were right away and the word "leukemia" played prominently in the conversation. Within three hours of that conversation I was at the Royal Jubilee Hospital in Victoria getting a bone marrow biopsy. The initial results under a microscope showed some abnormal cells, a very low platelet count, low white blood cells and low hemoglobin. A day later and after more extensive tests I was told I had MDS. An Unlucky disease.

Here's a few photos of me.

when I was 11 or 12 kinda wild and untamed

my first blood transfusion Aug.30 2008

I'm 45, kinda wild and untamed, but with a few unwanted leukemia cells floating around in my bone marrow.