3k

Light up, light up, as if you have a choice
Run – Snow Patrol

Sum, ergo curro (my contribution to updating Descartes)

To celebrate my continued good health, I ran 3k at 7am this morning. It felt good. Ben and Gyles came with me, and I’m pleased that my aching bones are still more than a match for the under 10s. My advantage will be short-lived, so I better take advantage of it while I can.

Heat Wave

I ran when I was younger the county roads in our valley. During those years, I never figured out what I was chasing … or running from. Perhaps, I just wanted to be alone. I traversed loops around the rectangular blocks of apple, pear, and cherry orchards, noting the seasons as blossoms emerged from their dormant winter and the fruit swelled on the branches and then was picked or fell to the ground and the leaves of the trees turned yellow and orange after harvest.

I ran by fenced pastures observed by the indolent glower of cattle endlessly chewing the rye and barley grasses in fields made tall and green from the plentiful water tables of northern Oregon. I followed graveled roads into the forest where loggers had clear cut majestic stands of fir trees and ran back along the forks of the Hood River and its tributary creeks.

Forest  Floor Detail
Mt. Hood from the Umbrella Falls Trail
Picking Blueberries with our Granddaughter in Parkdale
The Beach at Manzanita
Coastal Flowers
Friends at Manzanita
Lampoei's-The Best Thai Takeout in the Columbia Gorge

Sometimes, I wandered the dirt trails next to irrigation ditches and once stumbled and fell miles from home and limped back with torn ligaments in my ankle. I ran and I ran for ten years or more up and down the rolling hills in the lower, the upper, and central valleys, in the rain, snow even, and most trying, the blistering heat of summer.

Normally, residents of Hood River endure one period of 95-100 degree temperatures in the summer. This year, however, we’ve seen several hot spells, which old timers in the valley say are the worst in memory. In late June, the first brief but intense heat wave broke. Then, by Independence Day, another blast of hot weather returned and scorched the valley. A handful of wet days provided relief before a final more lengthy succession of hot days stifled activities for the remainder of July and into the first 10 days of August and stores sold out their air conditioners and fans and people mulled over what to do.

Throughout the surprising summer heat, we sought relief by hiking at altitude, visiting the coast, and refusing to cook meals at home. Seven of us followed the dog bone loop from Hood River Meadows to Umbrella Falls and back on Mt. Hood’s northeast slope. It’s just five miles but climbs steadily through the forest’s abundant shade before descending exposed to the sun. The thin alpine air caused me to stop occasionally and catch my breath but overall, I tolerated the low grade anemia related to my blood cancer, multiple myeloma.

On the following weekend, my wife and I escaped to Manzanita on the Oregon Coast. We walked miles on beach sand with friends enjoying the coolness of overcast windless days. My stamina felt remarkable compared to a year ago, which I credit to a change in medication.

Summer Sky at Dawn
Summer Flowers in the Garden
Summer Thunderheads
Happy Garden Flower
Summer Sky at Dusk
Summer Evening with our Granddaughter

Finally, the most recent string of hot weather days came to an end. The air, a broth thickened with heat, clung to my skin when I stepped outside. Thunderheads bubbled above the foothills below Mt. Hood. The sky darkened and a sluggish breeze stirred the leaves on the trees and the shrubs. Soon, it stiffened, teasing the chimes in my yard to sing along with the rattle of kettledrums that rolled forward from the ridges into the valley. Rain began to fall and would continue for several hours and the wind, indifferent to direction, dispelled the heat and something in the fragrance of the wet pavement reminded me of when I was a runner.

I remembered that the hardest part of any run was starting and the first few hundred yards before my body found its rhythm. I recalled the suffering satisfaction of long runs and the realization that stamina and endurance and well being must be earned with plodding effort, with staying at it, whatever it may be. And, I thought, “Today would be a good day to run,” and stood there for several more minutes observing the storm, getting wet, in the late summer of the warmest summer in memory.

Normalish

I’m wasting my young years. It doesn’t matter. I’m chasing old ideas. It doesn’t matter
Wasting My Young Years – London Grammar

Check up (from 10th Jan tests): … Haemoglobin 12.4 … Neutrophils 2.26 … Platelets 176 … Kappa FLCs 61 …

My scores. Blood count normal, normal and normal. Even my lymphocytes (0.86 and counting) are getting more normal. (The lack of them was what sent me scurrying to hospital when I got a fever last month.)

And my light chains are actually DOWN. I was beginning to get used to them creeping up…. 62… 65… 69 in previous tests. Changes at this level are meaningless (number too volatile, test too sensitive), but even so I imagined a trend where I would very slowly emerge from remission. But no.

I think these are the best results I’ve ever had.

I was so pumped up, I decided today was the day to go for a run. Only a mile and a half. But crucially, I was not in pain. That’s my first run for 98 weeks, since the time I broke my back. A really quite significant mile stone, then and now.

Endurance Tests

Cancer is an endurance test. One thing I have learnt since my diagnosis, is that to enable good health and a continuance of life, one has to put in the training and endure all the shit cancer throws at you. You get your rest, take your supplements, work out the brain, set targets and hope that you will reach the finish line intact.

Eleven months or so ago, when somebody told me they were planning to do an endurance test of their own, I thought I would have long finished this particular test of my own. Long finished. That has not been the case. My test goes on and nobody know when that will finish and that fact makes us all sigh. Sigh.

Tomorrow, it is the Ironman Wales. Wales is a country in the United Kingdom FYI. I won’t tell you all about it again, because I already did that once before (http://ejbones.wordpress.com/tag/myeloma-uk/), when I asked you for your money then. In short, Neil will be swimming, cycling and running tomorrow to raise money for Myeloma UK. It is an endurance test indeed, especially because his wife has just had a 15 day old baby.

So, right now, to assist similar people who are currently on the endurance test that is myeloma, I am asking for your money again.

https://www.justgiving.com/Neil-Whitney/?utm_source=Sharethis

Oh, and good luck Neil!

EJB x

The Great Manchester 10k Run

I wanted to post about doing the Manchester 10k run on 20th May before now but a holiday to the Italian Lakes and Switzerland (yes another!) got in the way.

Well I did it, it was bloody hard going though and I felt a tremendous sense of achievement – I wrote an account for publication on the Myeloma UK website/newsletter which will no doubt be heavily edited but what follows is what I wrote

The Bupa Great Manchester 10k Run 2012

I first did the Great Manchester 10k Run in 2009 when I was fit and well. On that occasion I raised money for Mind, a mental health charity, after a close friend of mine took her own life after struggling with mental illness. I found that the training in the wind and rain helped me come to terms with my friend’s death and I ran it in 68 minutes and really enjoyed the day and the physical challenge. I decided to enter again in 2010 but a combination of an injury and lack of motivation caused me to pull out and defer my place to 2011.

However in December 2010 I got diagnosed with multiple myeloma following emergency admission into hospital for kidney failure. Prior to that I had been feeling tired and had achey legs but my kidneys had deteriorated within a space of a week to 10 to 15% of normal function. I started treatment on 29 December 2010 on cyclosphamide, dexamethasone and thalidomide initially as part of the Myeloma X1 trial. After 1.5 cycles I had to stop taking thalidomide and come off the trial due to allergic reactions and too many side effects. I then started PAD and had two cycles of that which brought me into remission followed by a stem cell transplant on 1 September 2011.

The May 2011 10k had passed me by as I was in the midst of treatment and in no fit state to train for a run either mentally or physically but I did manage to celebrate my 50th birthday also in May.

I recovered fairly quickly after my stem cell transplant with about 14 days in hospital and then about 6 weeks of resting and walking a little more each day. A couple of months later I was sent the details of the Great Manchester run in May 2012 and thought, what the heck, I am going to enter this so I registered. My bone marrow biopsy after 3 months showed less than 5% abnormal cells and I was told I was in very good partial remission. I tramped around London, Dublin, Alicante on weekend breaks and got fitter and more active.

Training in earnest didnt really start till February 2012. I followed the same training plan as I did in 2009 starting with 20 minutes walk/run around 3 times a week and building up a little each week. I did find it a struggle at times and initially would come in from the run, go upstairs to shower and change and then find myself lying down for an hour as I felt so tired! But over the next couple of months my fitness levels improved and I didnt feel so tired afterwards.

After I was diagnosed with myeloma and during treatment which was tough going I got quite depressed and nearly threw out all my sports gear. Prior to being diagnosed I loved playing tennis, squash and did the odd run now and then. I thought that I would never do these things again even in remission as  these are high impact activities and as myeloma weakens the bones, I didnt think that it would  be possible. Instead I considered walking and more gentle activities such as yoga and tai chi. However my consultant told me that I could do what I liked providing I build up gently as my bones were as strong as anybody elses and my skeletal xrays had been normal.

As the day got nearer and I created my Justgiving page, received my Myeloma UK vest and fundraising pack and people started to sponsor me I realised it was actually going to happen and despite people telling me to take it easy my naturally competitive self wanted to do the best I could but I did find the training hard going. The final practice run was the Sunday before when I did 45 minutes but my pace was slow and laboured. I wondered whether I was taking on too much but was determined to do it even if I had to crawl round.

My parents were coming for the weekend to cheer me on and had also raised quite alot of money from their friends so the pressure was on! My wave started at 12.10 and as I walked through the crowds with my parents to find a suitable spot for them to cheer me on and then walked alone to the starting point and lined up with the other runners to warm up and then listen to an opera singer whose name I have forgotten singing You Raise Me Up, I felt very emotional thinking about what I had been through, what I was about to do and the fact that I never thought I would be able to do this again. I felt happy to be there and enjoyed and savoured the atmosphere of participating in a run involving 40,000 runners all running for charities that meant something to them.

Then the gun sounded and Bobby Charlton and other celebs waved us on from the podium and as I ran down Chepstow St I managed a smile and a wave to my parents and then began the hard slog round the course. When I got to the 4k mark I was surprised I had only done 4k and there was so much more to go but kept going. I got some advice from my boss last time I did it which was never stop and walk otherwise you wont be able to get going again. I stuck to that in 2009 and stuck to it in 2012 even though my jog was at a snails pace at times, it was a jog and not a walk. I kept going past the Old Trafford Football ground, home of my beloved football team and back down Chester Rd bolstered by the support from the crowd. I had my name above my race number and it was really good to hear people shouting come on Wendy!

On approaching the finish line back in the City centre on Deansgate, the crowds got denser and noisier which spurred me on and I managed a slight increase in pace and to feebly raise my arms as I got to the finish line!  Participants are told to keep moving so you dont clog up the runners coming in behind you and then I handed in the microchip which I had attached to one of my trainers so that my time could be recorded and then texted to me later.

I was delighted and relieved to have completed the run but my next task was finding my parents who werent at our agreed meeting place. I had given them my phone, purse and clothes to look after so had no means of contacting them, no money and no clothes to change into!

I had also arranged to meet some other runners who were raising money for Myeloma UK at a pub later.  It was good to see their Myeloma UK orange running vests as I hadnt seen anyone with a Myeloma UK vest along the way. Eventually I was reunited with my parents at Jamie Oliver’s restaurant for lunch and a celebratory drink after I had drank plenty of water of course. I dont know who was more exhausted, them from wandering around Manchester or me. When I got my phone back I found out from a text from BUPA that I had completed the run in 68 minutes, exactly the same time as in 2009. I was stunned and delighted as I didnt think that my pace had been as fast as 2009 and it was such a struggle getting round but it must have been all in my head!

By the time we got home we were all shattered and an early night was in order. Surprisingly although I was a little stiff I was able to walk the next day and set about the task of gathering in the sponsorship money. I was overwhelmed by the support I got from family and friends and their generosity. I was chuffed by my time and personal achievement and have raised £1000 for Myeloma UK. Would I do it again next year? Definitely!

Ps It is not too late to make a donation to Myeloma UK, check out my page at www.justgiving.com/wendyduffield

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The BUPA Great Manchester Run 2012

I am going to do the Manchester 10k run on Sunday 20th May and I hope to raise money for Myeloma UK, the only UK charity specifically dealing with Myeloma.

http://www.myeloma.org.uk.

Myeloma UK informs and supports people affected by myeloma and helps improve treatment and standards of care through research, education, campaigning and raising awareness.”

It has been invaluable for me and my family.  They organise info days,  arrange local support groups and host a discussion forum for patients and carers. They also have a specialist nurse available to talk to about any aspect of your illness or treatment.

I did the run in 2009 to raise money for Mind after a close friend of mine who had been struggling with mental illness for some time took her own life, but then I was relatively fit.  I found the training for it, those runs in the wind and the rain over the winter months after she died a useful tool for dealing with my grief and shock.

3 years on and I am running again (well hardly running, jogging slowly is more accurate at this stage!).   This time around how different life is for me.  My friend’s suicide was the toughest thing I had dealt with so far,  it was certainly the most difficult, saddest and most shocking event up till then in my relatively emotionally stable world.

Now what am I running for and why do such a physically demanding activity  (for someone with myeloma), only 8 or 9 months post stem cell transplant?

I am not entirely sure but it is something to do with wanting to be free, in control of my own body and mind and I know it has so much to do with wanting to be normal, back into the life I had.   Doing the 10k would prove to me and the world that I was ok, not a myeloma sufferer, not a patient or somebody with cancer.  The reality is that I will always be that because a relapse is inevitable as myeloma is currently incurable, I just dont know when that will be.  I got a harsh reminder of how fragile my remission is when I read about the Basil Skyers Myeloma Foundation

http://www.basilskyersfoundation.org/

The Basil Skyers Myeloma Foundation is run entirely by volunteers and was established in memory of Basil Skyers who died of Multiple Myeloma on August 2, 2010.  The charity aims to provide support of a non medical nature for people living with Multiple Myeloma, and to raise awareness about this condition.

Basil was diagnosed with Multiple Myeloma in 2008. After receiving intensive chemotherapy and a stem cell (bone marrow) transplant, Basil was actively supported by his family, his employer (Dixons Retail PLC) and his friends. The support provided to Basil fitted with the rhythms of his changed life by taking account of the physical aspects of his condition, and the social implications of his absence from, and his subsequent return, to work.

Whilst Multiple Myeloma is the second commonest form of blood cancer of which there are 4,000 new diagnoses each year in the UK, often the first family, friends or colleagues hear the words Multiple Myeloma is, as in Basil’s case, at the point of diagnosis.

It is a devastating illness that attacks the blood plasma cells and bones, causes intense pain and major problems with mobility and dexterity.  Due to red blood cells in the bone marrow where blood is produced being crowded out by cancerous Myeloma cells, extreme fatigue, breathlessness and confusion are common features of the condition.  There are a number of treatments for Multiple Myeloma but currently, there is no cure and the average life expectancy from diagnosis is between 3 to 5 years.

The average onset age for Myeloma is 60+ but that picture has begun to change dramatically in recent years, as more and more young people in their 30s and 40s, like Basil, are being diagnosed with this condition.

I have more or less quoted verbatim from the website because it describes so well the nature of the disease and the impact that it has.   I felt scared and depressed reading this, this guy was younger than me when diagnosed, has had the same treatment as me and died two years later. How can life be so unfair?  Rationally I know, as I am always being told, that the disease is so individual that I cannot compare myself to others. It seems that with any cancer there are degrees of unluckiness  (fairly bad,bad,awful,worst etc etc) but I have already survived the bottom range of the survival statistic ie the 12 month to 5 years one that I was given upon diagnosis.

Am I lucky?  I dont feel lucky and I dont feel like some people in remission seem to ( the glad to be alive, jump out of bed with joy brigade) but I do try to find something in each day to enjoy or to appreciate. Today it was seeing the David Shrigley exhibition in London, some of his drawings and cartoons made me laugh out loud, then coming back on the train, seeing the last of the snow on the fields, gazing mindlessly out of the window and tonight going to a friend’s for a roast dinner so just for today, life is good!

I need to learn to keep my mouth shut

Several months ago several individuals alongside the UMCCC develoment office had the idea of getting a team of dominators together to participate in the Annual Dexter-Ann Arbor Run who want to take on the mission of Cancer Kicker: Inspire others and Kick Cancer…specifically Multiple Myeloma.

I thought this was a great idea and that if 10 people signed up, I would run the 5k. I also foolishly said if 20+ sign up to take on this charge, I would run the 10k. I must admit, I was expecting just a handful of people to be up for this challenge. Well…guess again. We already have 50+ people signed up and I am sure that number will continue to grow.
That means….I need to start running some serious miles over the next 4 weeks. The race is at the beginning of June and right now I am slugging through 3 miles, once per week. Before I started the onslaught of chemo I ran in the Big House Big Heart 10K with a bunch of friends and we managed to push strollers the whole way and finish right around 50 minutes.

My goal this time is to finish. To keep my body moving forward the whole time, without walking. If over 50 people are willing to join the momentum we are building to dominate MM for good, I can find a way to get through this race! If you want to join, it’s not too late (instructions here).
Time to go for a run. -Phil