Merry Christmas 2019!

It’s that time of the year again, and given that we’ve made the decision to donate to Myeloma UK rather than send all our local/ online friends cards, it’s time for the Christmas newsletter to come out on my blog. This is my one post of the year where I don’t actually write it – instead, Nick has the privilege of sharing our past year with friends and family! So, over to Nick…….

To our family and all our friends (I say our friends, but of course mean Debs friends – I don’t bring much to that particular party)

Unbelievably this is CNL9 from the Famille de Gascoyne. I genuinely believed in 2010 when Deb first suggested a newsletter that it was one of her passing fancies – like going to church with the kids, buying an ice-cream maker or having regular quality time with yours truly (cheeky wink emoji), but I was wrong and you don’t hear me say that often, let alone commit it to text.

So here I am, nearly a decade later, trying yet again to make the trials, tribulations and joys of an average Midlands family vaguely interesting and usually failing – but because one or two of you told Deb you found my witterings slightly humorous, I now have to do this for the rest of my life.

Thanks and Happy Christmas.

Ok, now I have set the tone please settle down with a warm cup of bleach and enjoy the next few minutes!

2019 has been a year of house renovations, family growth, evil return of Myeloma, GCSEs starting, new jobs and dog whispering – and not necessarily in that order.

Let’s address the crap bit first. As many of you know, Deb has started treatment again for myeloma following relapse and she makes the pilgrimage each Monday to QE Birmingham where they infuse her with newly approved treatments to kill as much of the cancer as possible in preparation for another stem cell transplant some time next year (something to look forward to!!).

However, true to form, Deb is not defined by her illness but rather uses it in the most positive of ways to support the charities that in turn support us and many other Myeloma patients. We are so proud that she was officially recognised this year when she was nominated for, and won, ‘Helpline Volunteer of the Year’ at the Helpline Parnership awards, which recognised both her fundraising for Myeloma UK’s Peer support network (£125k and counting – spoiler alert as you are about to see another way we can take your cash) and her active participation as a Peer Support Volunteer.

In the 132 years I have been writing these newsletters, this is the first time I can quote someone (accurately) – in this case the Chief Exec of Helplines Partnership……

 “Deb is a superb fundraiser for Myeloma UK, enabling key services to continue, an ambassador, a committed volunteer for over a decade and great at her job because she has true empathy with her peers.”

She went on to say……“and of course this can only be achieved by the support of a wonderful, attractive and super-intelligent partner.” But that bit didn’t make the paper!

As stated earlier, Deb continues to actively fundraise and is currently focused on her 50KB450 and getting as many people involved as possible (www.justgiving.com/50kb450) and Sam has got into the act with his 15b415 (www.justgiving.com/15b415). Please take a look, keep up your support and maybe Deb can push for a CBE or become a Dame……

Whilst doing this, until recently when she has had to stop, Deb has helped to look after her father (who has sadly had to move to a home after a bad fall), netballed, social media’ed, dog trained, project managed, argued with builders and generally managed the entire household and all the work that goes into running a young(ish) family. I am, as always, inspired and proud in equal measure.

For balance and accuracy I should also mention that when she is on high dose steroid she is an evil witch – but only when she is awake. They didn’t mention that in the newspaper either – fake news strikes again!

All that work on the house has meant we have had more ‘staycations’ than holidays away, but in October we did travel to the far-away land of deep fried pizza and Irn Bru on a cultural exchange to sunny Scotland. Whisky, socially educating the children with the Rocky Horror Picture Show, visiting Myeloma UK, camera obscurer and hot tubs is a good summary of our adventure. We had a great time and are starting to think about next years oddessy once treatment is over.

Moving on to the fruit of my loins…..

Rebecca is 15 and in her first year of GCSEs (wow – where did that time go?). She has gone from strength to strength this year and is super busy with a plethora (always wanted to get that word into a newsletter – it means loads but sounds far more pretentious) of activities and interests.

She has progressed from guides to Rangers after a great 3 years & completing the Baden Powel award, volunteers weekly at her local Brownies, has fundraised for a trip to Romania in 2020 where she’ll work as part of a community program (or complain regularly about the food, or both), is doing the Duke of Edinburgh challenge, learning taekwondo, studying photography & cornering the Hagley babysitting market!

In early Autumn, she and I completed the Yorkshire 3 peaks as we cavorted for 12 hours over 3 gigantic mountains in Gods own country of Yorkshire. I say we cavorted. To be clear, Rebecca cavorted. I walked, stumbled, limped and then cried – but with Mrs G support we completed the task and thanks to everyone who supported and sponsored the event. Rebecca has had a great year and we are super proud of the person she is!

Sam in now 13 and well into his third year at secondary school. I have just re-read last years exciting instalment of the Gascoyne Christmas Newsletter, and to be honest I could just cut & paste my summary of the boy-child. School, football, mates and Xbox (not necessarily in that order). I mean this in a positive way because one year it might read very differently – but for now I can say we are proud parents of a bright, funny, kind boy. Football is still a big part of his life and at the end of last season he was awarded ‘Most Improved Player’ for his local team – as proud parents we applauded and after the presentation asked how he felt and he said ‘ I must be most improved cos I was shocking at the start of the season, Dad can I have some money for getting the trophy?’ A theme is starting to appear me thinks.

I asked Sam if he wanted me to say anything else about him and after a milli-second consideration he said ‘No. Can I have some money for a drink?’ – particularly strange as we’re at home!

For me 2019 has been a year of house renovation, family and starting a new job. I am now working with a team who have brought a new blood cancer treatment to the market in the form of CAR T – google it and be amazed as it is truly fascinating and of course I have a personal interest as they research potential use in myeloma. Watch this space. [Edit Deb: He has been a superb strength too to us all as a family – he does it quietly and without fuss so I need to add this as it is a huge job that he takes on without complaint after his long days in London. We couldn’t have managed the last few months on treatment without his love and support and whilst he would say it’s just his job/ life, not everyone would do it so well].

So that’s it. 2020 will bring its own challenges, highs and lows and I want to thank all of you in advance for your support and love – we do, and certainly will, benefit from it all.

Wishing you all a Happy & Healthy Christmas and 2019

With all our love

Nick, Deb, Rebecca, Sam & Marley xx

10th Cancerversary!

Happy Canceversary to me!  It has been 10 years today since I was diagnosed with Multiple Myeloma!
My treatment included high doses of chemotherapy,  Melphalan, Velcade, Thalidomide, Revelomid, and two stem cell transplants.  This kicked me down to “barely breathing,” but kicked Myeloma into a “Complete Response.”   I was on Maintenance medication for about 4 years and have slowly regained my strength since then.  I continue to do blood tests and lab work every three months and scans and a bone marrow biopsy once a year.

To celebrate 10 years my family gathered in Salt Lake City with the LLS “Light the Night” event.
It was wonderful to have my whole family (minus two babies) together reflecting on this journey and rejoicing in LIFE!

34 years together and counting!!!!

                                           

We wore stickers saying, “Kelly’s Kicking Cancer since 2008”

                       
                     

                                                               

I feel healthy and strong and try to keep cancer on the “back burner,” where it can’t take over my thoughts or negatively affect the day to day decisions I make.  I am a full-time teacher, wife, mother, and grandmother and I have so much to be thankful for!
So the big question is, am I cured?  Unfortunately there is no cure YET for Myeloma but good things are happening in the Myeloma research field and also in patient research.
                    Life is Good!

  Healthtree.org is a website and patient research platform that was created by a Myeloma patient and her husband right here in Utah.  Through patients sharing their specific types of mm and treatments with other myeloma patients and doctors around the world, researchers are able to find what works and why it works and then treat patients with the right treatment for their specific type of Myeloma.  This simple, free website uses the power of the internet to share useful information with each other instead of trying to reinvent the wheel with each new patient.

 I don’t know why I have been so lucky at this point to be celebrating 10 years with no maintenance medications beyond my initial treatment but if others can learn from my experiences, I am glad to help.  Please check out this website and see what can be possible by sharing information.

Sweltering

Helter Skelter in a summer swelter. The birds flew off with a fallout shelter. Eight miles high and falling fast
American Pie – Don McLean

Got to love the unrelenting heat … KFLC = 291 (as of 22nd June) … 

Not much to report, really. It is now 6 months since I began my chemo. Various delays have dragged the process out even more than I had anticipated. 25 weeks down, but 6 still to go. I’m pretty much fed up with the whole experience. I can’t even be bothered to regale you with the story of the week we just wasted while the hospital forgot to order my next consignment of drugs. My sister came to stay last week. It was lovely to see her – and a load lifted, for Marisa, to have someone else to cook the tea, and walk the dog. I’m thankful for that. Each week is one closer to the end.

My light chains continue their slow descent, which is the main thing. The last month’s results indicate that I will be approaching this transplant process with my myeloma more suppressed than last time round. Indeed, I’m hopeful I will start this SCT with my light chains almost where they were at the end of the last one. That makes me optimistic the outcome of the transplant will be another deep long remission* (though there’s nothing certain, at any point, about myeloma prognosis).

I’m fairly sure that my myeloma is no longer contributing any symptoms. My ups and downs, of which there are still too many, must all be drug side effects (mostly, I blame the thalidomide). I’m endeavouring to live quiet and subdued, so as not to disrupt or provoke my body. It means I do little, but if it reduces the flare ups of bone pain, or infection, its worth it. Frustrating though. And boring. I can’t help wondering about the figure I cut. I can see in the mirror that I look reasonably healthy, except I can’t stand upright. But I imagine that the rest – getting up late, sitting in armchairs a lot – bears more than a passing resemblance to laziness.

Yesterday morning I waved off Marisa and the boys as they headed to the airport and a flight to the French Med. A friend has generously invited Marisa to start the school holidays with a week at their family’s holiday apartment. I figured my presence wouldn’t add to anyone’s enjoyment.

So, I have a week on my own. I’m going to take myself down to Sussex and enjoy the weather. Peace and quiet has a certain appeal, and anyway, mine is an inherently lonely journey. Strip away the various illnesses and the aches, and the most notable aspect of the last 6 months, is the enveloping solitude. My 2018 hardly intersects with anyone else’s. I do look forward to rejoining the world around me as a proper participant, when this leg of the journey is done.

I had hoped to be out of treatment during the school holidays, but that is not how it has worked out. Despite the chemo, we have booked a holiday for the last 2 weeks of August. Assuming I can get my pharmaceuticals through customs, I’ll be taking my last few pills, and hopefully not too stricken with aches. We will be staying at an all-inclusive resort, very much not our normal style. I’m really looking forward to it. It will give Marisa two whole weeks off; offer the kids plenty to do; and let me sit by the pool without feeling like I’m a big drag anchor.

I am, as always, incredibly grateful to Marisa. She has carried the load, again, this year, and put up with me. (No-one would want to have to share a bed with me, I can assure you. You have no idea.) It seems too little, on my part, to have merely taken my pills, and tried not to moan.

Still, the end is now in sight. I’m looking forward to being more fully present. Yes, I’ll still have the transplant to get through, but that is a known quantity, and finite. So, I have this week to embrace my solitude. From next week, I want to be able to enjoy the summer with my kids and my wife – to emerge from the chemo-fog back towards some approximation of normal. I’ll still have to take it easy for a little while longer, because I still have a few more weeks’ drugs to take, but it’s not so long now.

* There’s some discussion, on myeloma threads, about whether myeloma actually has “remission”. In the sense applied to some other cancers, where “remission” means “gone away, hopefully not coming back”, it does not, because it is always in the process of coming back. But in the “remitting/ relapsing” sense applied to some other diseases – such as multiple sclerosis – it very much does. For me it is most helpful to think of my myeloma in terms of managing a chronic disease. And I use the word “remission” in that context.

Happy Mothers Day

To Mothers everywhere, here in physical form and all those who are gone from us, we remember your love and sacrifice.

None of us would be here without our mothers.

This is me and Sachi. 1986. I’m 34 yo. We waited quite a while to have our first child.Scan 6

 

 

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Then this is me and Zephyr in 1995. I’m 43. Whoa… where does the time go????

I’m going to the gym finally today. I feel good enough to go.

 

 

 

Family

Red shovel in the morning, walkers take warning.

Red shovel in the morning, walkers take warning.

By early winter, walking in our town became difficult. Cold snow fell for several days. Sidewalks were clogged with dry powder higher than my boot tops. So, I walked in the street where slicks of ice lurked.

Storm front after storm front flowed from the west and collided with frigid air stalled in the high desert of eastern Oregon. This weather pattern dropped anchor in the Columbia River Gorge. We were blocked in but prepared for the tough conditions. Christmas celebrations approached and we anticipated a new grandson’s arrival in January.

Then suddenly, the general tenor of winter darkened. My wife’s sister, Janet, suffered a right-brain hemorrhagic stroke on December 21st, the winter solstice.

Her home is in San Miguel, Mexico. There, her husband is a resident at a care facility outside of town. He is physically and cognitively incapacitated by Lewy Bodies disease. She looks after his affairs and supports him with regular visits. She’d come to Oregon this winter to deal with routine ongoing medical conditions of her own.

Bad weather caused her doctor’s appointments to be postponed. So, her stay in Portland extended beyond its original intentions. We shared dinner together in Hood River on the 14th. Janet looked good and appeared happy and healthy.

The sisters: Janet, Linda, and Marilyn.

The sisters: Janet, Linda, and Marilyn.

She returned to Portland and was finalizing her health affairs co-incident with the occurrence of her stroke. Friends, with whom she was staying, called an ambulance. When notified, my wife left immediately to be at her sister’s side. She was joined, shortly thereafter, by her brother and other sister. Seven weeks have passed. During that time, my wife has made just two brief trips home.

Meanwhile, I remained in Hood River. I had cancer treatments to manage and holiday events to share with our son’s family. Considering Janet’s situation, I can hardly complain about my health issues. Janet needed surgery to clean out the brain bleed. Had this stroke occurred in Mexico, it is likely she would have died. That’s not because the quality of care is lacking south of the border. But, any delay in the approvals for surgery could have been fatal.

Early on, turmoil ruled. Eventually, she graduated from the ICU to a step down unit. Then, she left the hospital for an acute care nursing facility. Permanent deficits as a result of the stroke have not been determined. However, independence sufficient to live alone has evolved from doubtful to maybe.

L-R: My wife, Janet, Nick, and Linda.

L-R: My wife, Janet, Nick, and Linda.

The three sisters, Marilyn, Janet, and Linda along with their half-brother Nick are remarkable individuals. Their parents did a good job. Compassion and empathy runs deep in these four. I am proud to be included among this clan. There are no children to care for Janet in her time of need. So, it falls to this consortium of family affection. Janet’s siblings must supply the long term support. And, they have willingly responded.

I am reminded, once again, how close we all are to the other side and how precarious life is as we step onto the slippery surface of aging. Who, we wonder, will be there when we stumble? Families remain the source of our greatest joys … and most heart wrenching pain. Each one speaks a unique language that tells its own tale. Ours is that of resilience and we speak it fluently.

 

New numbers and comments in The Drill.

Tagged: cancer, Columbia River Gorge, family, Good Blood Bad Blood, hemorrhagic stroke, Hood River, Hood River Valley, Lewy Bodies Disease, Marilyn, mortality, multiple myeloma, relapse

Notes To My Grandson

Hospital parking lot.

Hospital parking lot.

On the day you arrived, temperatures dropped into the single digits. A winter storm had battered northwest Oregon. For three days, feathers of dry snow fell in the mountains and throughout the Columbia Gorge. The Hood River Valley, which is named for the town that will be your home, rested under a thick white blanket.

Schools closed and the interstate shut down. A weather advisory halted activity in most communities. But you were safe in the care of your intrepid mom and dad. They arrived at the hospital at 5:30 am, having navigated blizzard-like conditions with the aplomb for which they are renowned. Your parents possess the determined grit of athletes, a trait you will inherit.

You and mom.

You and mom.

We knew when you would be born. A C-section was scheduled for January 11, 2017. Risk factors that arose after your sister’s delivery, three years ago, predicated the operation that brought you into the world. Your birth occurred at 8:28 am. You weighed 9.7 pounds and measured 21 and 1/2 inches in length.

You emerged from surgery with bruises on your upper arms and a red abrasion on the back of your head. At my first sighting in the maternity ward, your skin glowed with colors ranging from light pink to deep purple. You had remarkably long fingers and toes. Chubby, well developed arms and legs reflected the strength of the woman who carried you for the nine months of your development.

You quickly took to nursing even though mom’s milk did not flow the first day. With each attempt at feeding you lay contented on your mother’s chest nuzzling and bonding alongside she who would be your primary guide during infancy.

You and dad.

You and dad.

Everyone took turns holding you. First of all, your dad. His self-confidence is one of your birthrights. As a builder, he gets things done. You will come of age in a community built, in part, by your father and his friends.

After dad came Grammy Jennifer, Gramma D, Nana, Papa Guerra, and myself. You have adoring grandparents who were present on the day you were born. Grandpa Jeff came a day later, equally proud and excited by your arrival into the world.

Your long wavy hair resembled big sister Savannah’s at the time of her birth. She had spent the morning with the grandmas, then visited for the first time in the middle of the afternoon. You were not yet eight hours old when she held you gently in her arms. If you fussed, she consoled you with soft reassurances. Mostly, though, she marveled at your twitches and reflexes … your aliveness.

You and Nana and big sister Savannah.

You and Nana and big sister Savannah.

Soon, her every move will captivate your attention. Her creative play and caring nature are personality traits you will mimic. You could not ask for a better role model.

On day two, donor breast milk satisfied your hunger. This led to long naps punctuated by squeaks, snuffles, and murmurs. I held you for 20 minutes during one of these rest periods. If you stirred awake, gentle rocking helped you relax.

By the third day, your sleep periods increased further. Again, I cradled you in my arms, this time for over an hour. You slept peacefully, occasionally shrugging your big shoulders and kicking the blanket off your feet.

Courtyard of the hospital cafeteria.

Courtyard of the hospital cafeteria.

Later that day, Friday the 13th, you exited the hospital. Packed snow covered the streets. The temperature hovered at 17 degrees. Your birth certificate read, Samuel Edward Smith. The first name has a solidity that appealed to your parents. Your middle name is a tribute to grandfather “Papa Guerra,” your mom’s dad.

I like the name. Nonetheless, given the wildness of the winter’s weather, I felt partial to calling you Stormy.

Tagged: C-section, Caesarian Birth, Childbirth, Columbia River Gorge, Donor breast milk, family, grandchildren, healthcare, Hood River, Hood River Valley, Oregon, Providence Hood River Memorial Hospital, weather

The (Almost) European Vacation 

If I have said it once, it is worth repeating, going on holiday when one has Myeloma is an expensive, administrative nightmare. 

My recent holiday, was booked before I relapsed. In it’s origins, it was meant to be a holiday of relief. Relief for me that I had made it through two stem cell transplants in 2015 and lived to tell the tale. Relief to my parents that they were able to use their annual leave for something that did not involve staying with me in two different hospitals and then caring for me when I was discharged. It was exciting and it gave us all something to look forward to. There was promise too,  promise that I would be healthy enough to enjoy it without threat, and promise that I would be in the position where I would be able to financially contribute towards my own holiday. I am a 32 year old adult after all. 

Two months after we booked said holiday, I relapsed, thus evaporating all that promise and relief we had when Mamma Jones made the booking. This left five months of frought waiting, full of what ifs, maybes and fear that for whatever reason, I would not be able to go. Underlying all of this was the very real question that if the worst did happen, the £250+ travel insurance policy I had taken out would be sufficient to get my parents their money back. 

As the five months went on, I found myself not simply needing a holiday because I had not been on one since 2014, but needing one because my life had become dominated by my treatment. I had had no time to come to terms with my diagnosis and my prognosis, and unknown fully to me, I had fallen into the   the worst period of My Myeloma journey thus far. That’s not hyperbole, I’ve been metaphorically stuck in a mental well for half of 2016. Five months of constant treatment, looming unemployment, living in the triangle of my flat, my parents’ house and my hospital, had become nothing if not mundane, uncertain and depressing. To put it very simply, I needed the break. An escape.

Remember that I mentioned the holiday being an administrative nightmare? Well, two weeks before departure, in response to a form I filled out declaring my disability, which I completed to make sure I had the necessary assistance whilst we were away, I was told that I had to get written medical approval before I would be allowed on the ship. Drama. That’s right, I was going cruising. AND, there was drama. In the end, after an anxious wait, it turned out to be a fairly straightforward process, but I ask you, how many 32 year olds would have to jump through so many hoops before being allowed to go on a holiday? 

Logistically, I had to make sure I had enough medication for the 12 night cruise, which creates much checking, double checking and a healthy supply of dosette boxes. Mamma Jones and I had to barter with each other over what would be reasonable activities for us to do ashore at each port. I am prone to thinking (wishing) that I can do more than I am physically able, like an eight hour day, and she is prone to being a super protective mummy, worried that her ill daughter is going to push herself too hard and collapse in a ball on a nicely tiled Mediterranean ground. The bartering took some time. I like to think I was the winner here.

The biggest pre holiday issue? Chemotherapy. From the start, I was adamant that I did not want to be on my chemotherapy medication when I was holiday. It took four months to get the answer I wanted, with various options touted along the way. Three days before we departed I was told that I was allowed to have two weeks off from the Ixazomib, Dexamethasone and Revlimid. Trust me when I say, this was a holiday in itself.  

Some may think that this was an unwise decision on my part, but I weighed it up. I didn’t have much else to think about, so overthinking is now pretty common. Any physical setback I experienced would be far outweighed by the mental strength I would gain from really being able to experience something new. I think I was right. My pain has increased significantly over the last three weeks, I don’t know if was because I delayed my treatment by a fortnight, a result of doing too much, something worse or any combination of the above; but I have been reminded what it feels like to live. 

???

Ask yourself, have the expectations for one of your holidays ever been so great? 

???

I do hate to harp on about my age yet again, but on a cruise, especially a P&O cruise in November, age is most definitely an important number. I acknowledge that cruises are not particularly cool nor are they fashionable holidays for somebody born in 1984. For somebody like me however, who misses seasons in a blink of an eye, who struggles to walk a few metres and carry her handbag, a cruise is the ideal holiday. The Ideal Holiday. I boarded at Southampton, unpacked once and I was taken to Gibraltar, Valencia, Cartegena, Tangier, Seville and Lisbon, before returning to Southampton, where Mamma Jones’ car was waiting for us. Excluding the pre holiday admistration, the doing part of the holiday was so easy. Evidentially, the ease of a cruise has a lot to do with the demographic of the ship’s holiday makers. This has nothing to do with me, but on one relaxed sea day, Mamma Jones’s foot was the victim of a mobility scooter drive by in which the perpetrator not only failed to stop at the scene of the accident, but was completely oblivious to it. The perpetrator then proceeded to bring down a clothing rail in her wake.

There was just one not so small snag… One lingering question that I could not get out of my head that constantly threatened turning our holiday into something bittersweet. Would this holiday be my last holiday? Every time I thought about it, and I would catch myself doing it multiple times a day, I had to swallow quickly and push that morbid thought as far away from my mind as possible. I could feel how much fun I was having and then see how much fun Mamma Jones was having, and I could not help but think, would the two of us ever enjoy something like this together again? Would I ever be able to go on holiday with my sister again? And each time, like just now, I had to swallow quite ferociously and not speak, because the thought of my Mum having to find a new travel buddy or my family going somewhere without me breaks my metaphorical heart just a little bit. 

I might have cancer, I definitely have one with no cure and an unknown prognosis, but that is not the only issue when it comes to the prospect of my future holidays. Some life might grow on trees, but money does not and future holidays accompanied by astronomical travel insurance premiums do not come for free, even if I do feel like I deserve it.

As horrible as all of that is to consider, it spurred me on to have the best darn time possible on the ship I decided to call, the Floating Coccoon. 

My body knew what it had to do and boy oh boy, my body did not fail me. Gone were the much needed lie ins and the penchant for afternoon naps. There were concessions sure, I was in bed by 10pm every night at the very latest, and by 7pm of every day I struggled to sit in a seat because I had failed to lie down enough during the day. I was back to sleeping on six pillows. I am still on 6 pillows. There was just one evening where I stayed in with exhaustion, getting into my pjs at 6pm. These are groundbreaking statistics for me. 

It really is like my body knew, for on the last night of our holiday, after one almighty click in my neck, I could no longer walk with my walking stick because I did not have the upper body strength to hold. I have been suffering since. It’s a small, somewhat painful concession that was completely worth it.
I could go on and on and on, but I think you now have the idea. I enjoyed myself.

In the 12 days we were away, I witnessed 12 spectacular sunrises, 12 sunsets, one mega moon, two rainbows, violent seas, six different ports in three different countries and history. So, so much history. And colour. New colours everywhere for my eyes to feast on. My NOW TV box does not begin to compare.  For 12 days, my eyes were spoilt. For 12 days, my Instagram feed contained images that were not of dogs. For 12 days, I allowed myself the occasional alcoholic beverage and I ran the germ infested gauntlet that is a hydro pool. For 12 days, I felt free from my shackles. 

To my beloved Mamma Jones and Haemo Dad, thank you. 



EJB x

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Picking Blueberries

Blueberries

Blueberries

Recently, my wife and I visited a U-pick blueberry farm in the upper Hood River Valley. Mourning doves crooned in the surrounding forest. A smear of clouds waltzed across the summer’s sky. We expected our son and granddaughter to join us. Acres of mature bushes, loaded with ripe fruit, beckoned. 

The farm is located on Dee Flats, near our old stomping grounds adjacent to the Mt. Hood National Forest. This plateau of volcanic rock is noted for the depth of its topsoil. Fruit orchards prosper in the fertile sediment deposited over time by winds that scour the Lost Lake Canyon.

U pick and the honor system. Weigh the berries and put your money in the box.

U pick and the honor system. Weigh the berries and put your money in the box.

We live in town now, 15 miles downriver, but for over 35 years had a small house within a mile of the berry patch. In years past, I ran the roads of this plateau to alleviate the stress of work and parenting. Later, when recovering from a stem cell transplant for my cancer, multiple myeloma, I recuperated with daily walks around the cultivated blocks of pear orchards. Often, my youngest son and his goofy dogs accompanied me on the circuit of farms.

This visit to the former neighborhood evoked memories of family history. It was here that we sank roots deep into a mountain community and made a small Oregon town our home. One son, Noah, has moved away, yet it was he who pined most for the homestead of his youth when we sold the house.

The other son, Isaac, the aforementioned youngest, chose to remain in the valley. His family resides close to Dee, along the east fork of the Hood River. Within moments of he and Savannah joining us, blue streaks from the irresitible fruit colored her cheeks. 

Me, my wife Marilyn, Savannah, and her Daddy, Isaac.

Me, my wife Marilyn, Savannah, and her Daddy, Isaac.

Our buckets filled quickly. Soon, 43 pounds tipped the scales at the pay station. So too, my heart felt the sweet weight of reminiscence on what we’ve known together: the joys, the hopes, love and pain, the investment into and profit from nurturing, the confidence instilled, the fear and missteps, the forgiveness, and, most of all, the shared trust for the journey, not the destination.

Savannah gobbled the berries like a famished bear cub. Uncertainties lay ahead for her as they do for any child. And, given my age, I can never know what solutions she will choose. Yet, I am consoled. She has excellent guides.

Before leaving, we posed for photos in the morning light. Doves continued their serenade. More pickers arrived carrying bags and buckets. Though it’s risky to predict the future, I think it likely that the winter of 2016 -2017 will be blessed with blueberries for our pancakes.

Tagged: blueberries, cancer, family, Hood River, Hood River Valley, Marilyn, multiple myeloma, nature, parenting, stem cell transplant, writing

Happy Fathers Day!!

To my husband and the best father 2 kids could have asked for. My husband was a completely involved father when they were young and still is. Just this past week he took our daughter with him on his work trip up the farthest point in California. Eureka. As a sales rep he gets to go to some great places, stay in nice hotels, eat out and see the areas he’s servicing. So when a chance arises that he can take one of us (and he pays the extra ,of course) then it’s like a mini-vacation for who ever goes. So have a geat Fathers Day!!!

 The Notice Board

Way back in 2013, I spent 11 days of my life in a room of great bleakness. It is difficult to conjure up the mental differences between slight and great bleakness, but  for me it was a room that encompasses everything that was bad with this word. If only it were the interior design of that room that was a problem. The centrepiece, if such a room could be deemed to have a centrepiece that was not its bed on wheels, was a grey notice board with three signs to the right hand side of the board. The biggest sign told me how to wash my hands properly (but I think I moved it there) , the second poster told me if and why I would be eligible for the Patient Transport Service and finally, there was a leaflet, that if you looked really hard at, you could see the 12pt font printed list of all the additional fatty foods I could order from from the canteen due to my not eating right and the neutropenia. I still cannot get over the fact that eating badly is considered to be better for you than a piece of fruit in any situation, but there it is. The PTS sign had some late 90s clipart on in and somebody had definitely used the ‘Tools’ section on MS Word on all the documents.  I hated that notice board. I have also realised that I still hate that notice board. 

The closer I got to April’s transplant, the most frantic I become about ensuring that I would never have to look at that grey notice board again or it’s posters. One of those things could not be achieved because all hospitals all over the land, have posters telling visitors how to wash their hands, and I currently have my sight and can pee, so put two and two together. Developing a board that would be nice to look at became almost integral to my planning. I mentioned in to friends and the importance of of was mentioned in my counselling sessions.

All in all, I think I visited four art gallery shops, the BFI shop, two Boot’s Pharmacists for printing purposes and Amazon. I had mini pegs, string two different styles of pins and just under 15 postcards to accompany my ten or so photographs. I was going to be the best notice board that had ever been nailed to a wall. 

And then, realistically being £20 lighter, it turned out that I did not need it during Transplant Number 1. I am not kidding when I say that I was slightly disappointed by this. I was disappointed that I was not become sick enough to to be admitted to hospital to see my notice board come to fruition. 

Unlike the majority of you folks out there, I realised that I would very soon be given the opportunity that did not involve committing a crime or other institutionalisation, to be in a room with a notice board. I hoped and I waited and I packed my ‘art’ with wanting. Then last Wednesay happened, I was admitted. With breath that was baited, I was taken to Room 10. I knew the word ‘room’ meant I would be in my own room, but in the few short pushes in the wheelchair I closed my eyes and touched EMan’s paw. It worked, and  because when the door opened, I saw not a notice board but a white board. I’m an artist of many a media, and just as soon as I received confirmation from three different Medically Trained People that the board was not there for medicinal reasons, it was go go. I was ready for my Art.  Given the change in background, Mamma Jones had to go out and buy scissors and tape, and given the passing of time, I misplaced a few photographs and postcards. 

In the end, not all of my support network was represented, and I had to explain to far too many people that some of the photos were not of my own (presumably failed) wedding, but it worked. I had directed a little something of my own to make what was a 7 night stay in hospital, that very bit not bearable.

  

And yes, it had fairy lights too.

And double yes, it’s back to being a white board.

EJB x