Holly Butcher: her letter goes viral after she dies at age 27

Many thanks to Cynthia for posting about a letter written by a young Australian woman, Holly Butcher, who died on January 4.  She had Ewing’s sarcoma, a rare type of bone cancer that usually affects young people and children.

I was quite touched by parts of it, so I decided to write a quick post. Before I forget, here’s the link to an Australian news article about Holly (and you can get to and read her full letter there, too): goo.gl/sLEYd8

In Holly’s letter, I recognized some of the feelings I myself have/have had…For instance, the irritation that I feel at times because my girlfriends don’t want to turn off their cellphones while we are playing cards. These weekly get-togethers, which last a couple of hours or so, are an important moment for all four of us. It’s therapeutic, too, for all of us. We chat up a storm, we laugh, we are silly, we eat homemade goodies, we make fun of one another, and so on. It’s OUR FUN TIME TOGETHER. But it can also be our serious time whenever one of us has a problem to talk about and try to solve. Before the cellphone era, there were no interruptions. But now the cellphones have to be turned on (not mine, by the way. Mine is always OFF).

It’s all the more annoying when I consider that, just a few years ago, those cellphones didn’t even exist…Our generation grew up with rotary dial phones, which then became cordless phones. Cellphones entered our lives in the late 1990s (if I am not mistaken). Before then, we weren’t connected to the world every single nanosecond of the day…but hey, we managed to survive anyway. So why is it that nowadays we are obsessively and almost physically attached to those little, annoying devices (useful in emergencies, I’ll grant you that)?

Anyway…Sorry for the rant. That was just a thought that popped into my head as I was reading the part about girlfriends having their hair done and so on.

Like Holly, I have always been frustrated that certain subjects are taboo. Death, she writes, is treated as a taboo subject, as though it will never happen to us, and that is certainly true.

Cancer is also taboo. Here in Italy people always die after “a long illness” or “an incurable illness” and similar euphemisms. Very rarely does someone mention the dreaded word, “cancro.” Even now, in the 21st century! Whenever I hear that a friend’s relative has died after a long illness, I always ask “was it cancer?” If the answer is yes, and it almost always is, then I ask, “what type of cancer was it?”

I’m not afraid to use that word anymore. But many years ago, the situation was quite different. When I was first told I had multiple myeloma, I thought I was going to die at any minute. But if cancer hadn’t been such a taboo subject throughout my life, I’m sure I would have had an easier time dealing with this terrible diagnosis.

And that’s my point here, really: we have to bring these topics out into the open. Of course, not ALL the time, duh!  I mean, who wants to talk about cancer and/or death all the time? Yikes! Not I, for sure!!!  🙂 

Anyway, I haven’t died (yet), and, as the  years have gone by with no great shake-ups, I have followed some of the suggestions mentioned in Holly’s letter…For example, Stefano and I have become birdwatchers (although we still say “hey, look, there’s a BIRD over there!” hehehe, still rather terrible at identifying birds, we are…), we travel as much as possible (not lately, but I hope that will change soon). And so on.

And then there’s the part about stopping to watch/listen to Nature…to cuddle with your pet (a dog, in her case…cats, in mine)…to listen, really listen to music…to eat the cake – zero guilt…to say no to things you really don’t want to do…

Oh yes, indeed. I do try…although life does get in the way sometimes, as it has recently when I’ve had to deal with a few stressful personal items. But…life goes on, and I’m certainly not a “whinger.” Uh-uh. No way. I deal with the stress, do my best, and get on with it!

In sum, there are a lot of really good suggestions in this letter, and that is why I decided to post this link, even though, yes, it’s always sad, very sad, to read about someone’s death, particularly that of a young person.

But her letter is actually very upbeat, as you will see, and that’s how she wants to be remembered…as will I, too, someday!

🙂

Talktalk

There are things I want to say, but I don’t know if they will be to you
Alcoholiday – Teenage Fanclub

I’m sticking this up here as part of the “complete record” aspect of dialm.

I remember, 5½ years ago, spending a lot of time working out how to talk about myeloma. It is one of the reasons I started this blog. One choice I made was to write to groups of my friends, letting them know the situation. It isn’t great subject matter for a letter, but the benefit – for me – of writing it once, rather than saying it endlessly, is huge.

I find myself in the same situation again now. I’ve just written to a group of my friends. I’m posting it here not so much for posterity, but in the vague awareness that someone else, in a similar position, may find it useful to see how I manage my own situation.

Talking about illness is tricky. I don’t believe it is constructive to ignore it. Nor do I want to spend all day every day talking about it. I’ve learned lots, from other people, about the many different ways people handle it. Some better. Some worse. This is my way. You might find it informative. Or you might think I’m nuts. Either response is fine by me.

Dear friends

This is a bit of an odd letter. Odder for you to read than for me to write because it’s not new news to me.

Some of you know already that I have myeloma – a type of blood cancer. It causes anaemia, poor immunity and damages bones. I was diagnosed nearly six years ago, after I broke quite a few vertebrae in my back while out running. It can be treated, but can’t be cured. I had a lot of treatment six years ago and have been reasonably well since then, but it has been coming back slowly for a while, and I need to have more treatment this year.

I’m not sure how the treatment will affect me (the drugs are ones I haven’t taken before), but I’m assuming I won’t always be at my best! I wanted you all to know so that you understand if I look a bit worse than normal, and if I sometimes can’t attend things when I should. (I’ll need to have a stem cell transplant at some point in the summer, which will be a lot more intense.)

I write a blog, which tells the story, for anyone who is interested, but also means people who want to know how I am can find out, without us all having to talk about it. This doesn’t mean it’s a taboo subject, but it’s not anyone’s preferred topic of conversation in the pub either. At least, not all the time.

The blog is at dialmformyeloma.blogspot.com

If you want to get notified of updates, you can either click the link on the blog and give it your email address, or you can follow me on twitter: @alexlondon.

I’ll see you all soon I hope. I’ll take all your good wishes as read, so don’t feel any obligation to reply to this letter, or even to mention it. In my experience, my myeloma gets more than its fair share of airtime anyway.

Alex

Super Bowl Sunday Drink Ideas

As our life is slowly returning to “semi-normal”, we decided it was time to start entertaining again.

Our usual suspects will be here for our annual Super Bowl Party.

These drinks from Brooklyn Crafted and Sparkling Ice sound like fun!

Game-day Ginger Whiskey Cider courtesy of Brooklyn Crafted

Ingredients
2 oz. Hard Cider
1 oz. Whiskey
Brooklyn Crafted Ginger Beer Mini in Traditional, to fill
Crushed Ice

Directions
In a 12-16 oz. high ball glass, combine the hard cider and whiskey. Fill the glass with crushed ice and top with Brooklyn Crafted.

Super Bowl Supercooler courtesy of Sparkling Ice

Ingredients
1 Part Riesling
1 Part Sparkling Ice Pomegranate Blueberry
Pomegranate Seeds
Cranberries
Teaspoon Agave
Mint

Directions
Mix all in a pitcher, pour into wine glasses, and add a mint leaf garnish.

TimeBoMB

Mother, do you think they’ll drop the bomb? Mother, do you think they’ll like this song? Mother, do you think they’ll try to break my balls?
Mother – Pink Floyd

BoMB time

Thought you’d be as delighted as I am to know I’m going to have a bone marrow biopsy on Monday!

Oh the anticipation.

Hopefully, I’ll also have a lung function test, another MRI and an echocardiogram. After which, all systems go for treatment!

But only one of those appointments fills me with dread.

They have not offered me any sedation. They never do, though if I insisted on it, they’d have to provide it. But that would require another member of staff, and things are stretched enough as it is. Anyway, there isn’t any gas in the little room they use. So if you are to be sedated, it has to happen in the main treatment space, i.e. in public rather than in private. I’m not sure which is worse. At least in private, no-one can hear my screams.

Minimalism, Creating routines

HDT quote.jpg

Thoreau says it all in this quote, I think.

We need to think about what we buy, what we consume and what we do with it all after we no longer need it. Plus, how many hours did you work to get that new whatever. It’s certainly food for thought.

But today in my minimalism series, I want to address routines. So you’ve decluttered, purged, donated, thrown away, and organized whats left. Now comes keeping it going by creating routines. Daily, weekly, monthly.

When I started my minimalism journey it was Flylady that helped me get going. I was starting a new chemotherapy after remission of 4 years. The chemo was fairly easy to tolerate 21 days on 7 days off. But the steroids were tough, so I found FlyLady and started implementing the 15-minute rule and followed her weekly zones.

There are 5 zones and every 5 weeks you go thru your whole house. Since decluttering and purging, tidying and housework are a breeze. My biggest zone, and by that I mean the most time consuming, is the kitchen.  I can do all the other rooms in about 10 minutes.  I also do the weekly home blessing which includes washing mirrors and dusting.

She also has an evening and morning routine.  I do the morning one based on what I need. For instance, I do 1X of laundry a day, I swish and swipe the bathroom in the morning, I make sure the counters are clean and the sink as well. Of course, I make the bed daily. I think the evening one would be especially important if you have kids going to school and need to plan lunches etc.

I think it’s important to create your own routine based on what your life looks like. If I had young children, I’m sure it would be different, working professionals will look different too. Start with the basics

  • make your bed
  • tidy the living room or any room that needs picking up
  • 1X laundry a day, done from start to finish
  • clean sink
  • wipe bathroom down
  • empty dishwasher
  • plan dinner

I plan dinner with a weekly rotation but I plan specifically in the morning what I ‘m doing for dinner.

Keep at it. It took a while to get my routine down and it will you too.  Do the most important things first and then schedule 15 minutes for the rest and see how much you can accomplish in 15 minutes.

There are tons of Pinterest ideas for routines to check as well.

 

 

 

We’re Rolling Right Along

Dom is getting stronger day by day.  His physical therapist has basically made Dom his “project”.  Dom almost feels guilty, as the guy pretty much ignores everybody else when we’re there 3 days a week.

He loves his rollator and doesn’t use a wheelchair any longer.

Things are finally returning to normal for us.

We attended Mass for the first time in months last week.  It felt SO GOOD to be back!

We spent much of today at the Tulane Cancer Center.  Dr. Safah grabbed some blood work for his M-Spike and Light Chains.

She also gave us orders for a couple of MRIs on Friday.  We can do that locally.

He’s getting his monthly Zometa infusion tomorrow.

Then back to Tulane in a couple of weeks.

She mentioned a drug that kills Myeloma, but isn’t CHEMO.  Sounds good to us.  We’ll learn a lot more in a couple of weeks.

Thanks for continued prayers and good vibes!

Minimalism, now to organize!

9aff9c2e96b462ea1d37c12c64c687dcSo, you’ve decluttered, purged, and got rid of the stuff(at least for this round,)and things look pretty good.

Now comes some organizing. Let the fun begin.

In my pantry, which is a stainless steel restaurant shelving, I use Ikea jars.

Plus 1/2 gallon Ball jars.

I like them equally but the IKEA jars are almost 1/2 the price. When I’m in Ikea, I always try and pick up a few. So into these jars, I put my organic long grain white rice, organic short grain brown rice, pasta, polenta, WW flour, and organic white flour.  Also, my black beans, pinto beans, garbanzo beans and green lentils.

The glass jars make the pantry look more attractive. Especially since my shelves are open.

In my bathroom, I use Target’s white baskets and keep q-tips and extra stuff in.

IMG_1187.jpg

IMG_1188.jpg

You can be very creative in creating organized belongings. I use vintage suitcases to store my kid’s Waldorf wood toys that I just haven’t gotten rid of yet. I did donate the Waldorf dolls as they were made of cotton and wool and would eventually degrade.

I also have 2 under bed bins to hold my vintage tablecloths and a few odds and ends. Our bedframe(homemade) is wood and low to the floor so using the area underneath it is wise and useful.

After the purge, organize in a neat and clean way.  Your home will be easier to keep tidy and to clean.

 

Minimalism, create white space

9a1fb140b9232e6ec8deba592897d9cb.jpgAhhh, to have the things out of the house. It’s very freeing and leaves open lots of possibilities.

It’s best to follow, though, the one in one out rule once you’ve done a good purge. So, if you buy a new T-shirt and the old one goes out. Same with everything, although, one caveat might be if you are buying something you need and don’t have one like it to discard. In that event, just find another item not related to donate.  Of course, I don’t follow this to the letter at all. For Christmas, we all received(from Santa) 2 Easton Press books. Since I’ve decluttered almost all my other books, I didn’t feel the need to reduce the books.  They are beautiful classics that are leather bound and gold gilded. I bought a lot on eBay before Christmas for an amazing price of 80.00 for 7 books.  Very sweet deal.

Creating white space is leaving some spaces unfilled. Perhaps a shelf only with a few items. I try and keep one open shelf or at least 1/2 of a shelf open. It’s much easier on the eyes not for it to be packed.img_0363

Also, creating white space allows you to open up to new possibilities and ideas. Rearrange your furniture or think of a creative solution to small space living(or medium, or large) but something new.   The possibilities are endless really when we have decluttered down to the essential, purged all the unnecessary things that we hold on to, white space let’s us be creative.

Plus, it’s really fun!!

Try to empty a shelf, a cabinet shelf, or a drawer.  Let it be a  space for light to come in.