Event Planning

Events terrify me these days. They terrify me not because I am socially awkward, though I can be slightly awkward at times because My Myeloma led to my almost sobriety. Events terrify me because they come with so much baggage. The baggage usually comes from my puny brain, and mostly stems from a belief I have that people, that’s right the broad brush stroke of people, do not full understand myeloma and think that it and by connection, me, are a pain in one’s arse.

Will my energy last? Will somebody who does not know about myeloma, or is just plain ignorant, put me in some sort of headlock and yank my neck down? Will a drunk person bash into my back causing it to fracture? Will my back fracture by itself? Will I cause a scene? Will I spend the entire time wanting and needing my bed? Will I have any fun at all? Will people understand that I cannot have fun like I used to? How will I get to my bed? What will happen if I have bowel issues?

Three or four or all of these thoughts tend to pass through my head prior to any scheduled event. They did prior to my relapse, so in the time hence, said fears have only increased.

There are times when I cannot go to events. It has taken nearly two years for me to fully admit this to myself, but it is the sad truth. There are just some events where the value of pain and fatigue crush the chance of whatever fun I may have, and in turn, ever so occasionally, I will let people down by my absence. And yes, I value myself enough to believe that my absence would feature on people’s radar. It’s never an excuse.

A few weeks ago, 12 days ago to be precise, I had to attend an event. Not just any event, a wedding. Not a wedding located in taxi distance from my flat, a wedding near Halifax, Yorkshire. Due to some well documented issues with my back and the acceptance mentioned in the paragraph above, I was unable to attend the hen do.

I have been to a wedding with myeloma in my body. I have also declined two other wedding invitations because the myeloma forbid it. At the wedding I attended, I was a bridesmaid, but there was no fear attached to that event because I was surrounded by a family who know too much about myeloma, so I knew that my limitations had been thought of. My family was also invited to said wedding, so they were around in the evening to mind me. Mind me they did, but not before a drunken fool made my spine go into spasm. The wedding was also located a mere 8 miles from my second bed, which came in handy when I needed to lie down.

Anyway, I digress, back to the wedding in Halifax, away from these comforts. I was advised by a Medically Trained Person not to attend. It was some advice that I paid absolutely no attention to at all. Instead, I set my mind to attending, and put a personal delivery plan into motion, to ensure my success. Sod the bride and groom, it became about me getting through the day. Well, it became a little bit about that, it was still their special day.

I had a week of resting to preserve energy and one day of not leaving the flat at all, lying flat, on the wedding eve. I changed the days I was supposed to take my steroids to avoid any chance of a crash, and I also used those bastards to assist with my staying power (something I did as a bridesmaid too). I also took cereal bars, lots and lots of cereal bars and lollipops, should I, at any time feel like I was about to crash. And still, there continued to be some mild fretting over my usual event related insecurities.

The point of this blog is to say that all that worry, all my worry was redundant. I might even go as far as to say that it was unnecessary. I have long worried that my friends do not understand myeloma and that within that, they do not have the patience for it. The patience for me. It is a long running theme in my counselling sessions. The wedding was on a Saturday and by the Sunday night I had this strange feeling of love and gratitude in my stomach. Almost shamefully, I was beyond pleasantly surprised.

There was a group of about 15 people at the wedding, who I felt were on hand to make my life easier. Actually, my description is incorrect, because I did not feel like me having myeloma was a big deal or a chore or a nuisance (apart from when it came to getting to the car at 01:00hrs, and even then, I was assured that I was none of these things). Some how, it subtly blended into the background, bar my profuse sweating, and I was able to last the entire day just like them.

If you are wondering what the hell I am going on about, let me enlighten you.

• The day before the wedding, a friend came round to paint my toenails because I cannot.

• I did not need to think about any mode of transport, I was driven to and from Halifax riding shot gun.I was also driven to and from the wedding venues, totalling four journeys, with four different sets of people.

• I was allocated a place to lie down, should I (and I did) need it during the day.

• A friend noticed my profuse sweating, and gave me a cooling wipe.

• I was given a means to return to my hotel at any time, should I (and I did not) need it.

• A friend convinced a stranger to drive up a long steep hill at 01:30hrs in a pick up truck to collect me because my lift to the hotel could not get up the hill and the booked taxi refused to.

• The bride kindly excused me from my pre wedding commitment to make jam, because she knew I would struggle to stand and bend at my hob.

So you see, the moral of the story is this: My Support Network do get it, it is not just a select few who understand my plight, and when done correctly, I can pluck a good 12 hours worth of energy from somewhere. Oh, and my friends do sometimes make me feel warm and gooey inside. And I looked nice.




P.S. I slept for 14.5 hours the day after the wedding. It was grand.


My writing skills… my mental clarity… my English vocabulary… my concentration… my memory… all rather rusty, I’m afraid, after my vacation.

Is it the sea water and sunshine perhaps, like an old Fiat car…? Maybe holiday inertia or just being out of practice? I suspect the latter, and as I do want to get back into writing, because I enjoy it, I am starting off with a meandering post to ease me back into writing again and see where it leads…

Meandering river 2Meandering river 1

Details of medical stuff – yes, there are more to share – responses to the questions people have posed, the much-anticipated Grand Tour, along with other List for Living exploits will follow, once I regain a sense of how to write and hopefully make writing a more integral part of my day/week.

When I first began this blog, it was a space to express myself and what I was experiencing, in particular the emotional/psychological aspect of living with cancer, which continues to fascinate me; to keep a record of medical treatment (lest I forget); and to share what was going on with those who care about me and anyone else who wanted to know without having to keep repeating myself, especially when I was too fatigued to take phone calls. If by chance my blog helped others going through the same thing, then that was an added bonus.

From my stats I can see that my post on having the Hickman line inserted, for example, is a popular read. Now that really IS an exclusive audience! But I’m sure that level of detail about the procedure isn’t available elsewhere, so I’m pleased to help.

I notice a trend with many of the myeloma blogs I follow… When we’re in remission, or no longer in treatment, we generally have more energy and are able to get on with life, with doing things that we’ve not felt like or been able to do during treatment and therefore we have less hours on the sofa – more on bicycles, in aeroplanes, trains, workplaces or even running shoes (not me, but one myeloma friend is currently in training for a triathlon!), which tends to translate into less time/inclination to blog. We also have less to write about in terms of the myeloma per se and so we question what to do with our blogs, whether we will continue to write and if so, about what?

At least one blogger I follow hasn’t written anything for many months. This is a good thing for her, because she is now putting her energy into a much-loved job, her two children, husband and other non-myeloma-related activities. She must now be celebrating two years post-auto transplant, as she had hers four weeks before I had mine, in July 2011 and is still in remission. Long may that continue for her.

Sadly, there are also some bloggers who stopped because they became too ill or died. I don’t feel comfortable removing their blogs from my feed, or removing those who followed my blog from my list of followers, so they remain in memoriam.

As time has gone on, my motivation for blogging has changed. For a start, I discovered that I enjoy writing so much more than I could have imagined, given how much I hated written assignments for courses or reports at work. I like being able to share my thoughts; the audience can choose to read or not, but in the meantime, I can hold forth.


There are times when I may have become carried away with entertaining rather than writing from the heart, which is fun, but may need tempering? I hope to be more grounded and congruent from now on. Feedback is most welcome…

Being told that I write well also encourages me to keep writing and makes me wonder what else I might want to write and how I might actually go about doing that, especially if I could earn an income from it. Any ideas, advice or suggestions?

Being in pretty good health these days, the blog is and will be much more focused on “Living my life”, than on “with myeloma”. Nonetheless, just going through treatment, even if it had led to a cure (as it does with some cancers), has had an impact on me and I am forever changed, as I think is anyone touched by cancer or any other life-threatening disease, including carers, friends and family. I feel I have gained so much from my experience and now have the chance to approach life differently. This is not a bad thing in my opinion.

Having said that, I AM still living with myeloma… I will almost certainly experience a relapse at some point. That knowledge is something I live with and it affects all my choices, whether humble or grand, on a virtually daily basis. Neither is this a bad thing.

Even in remission, I am definitely living WITH myeloma and all that it means. So, writing about how it is for me at this stage feels as important and intrigues me as much as the initial stages of diagnosis and treatment. I think it’s an issue that can be forgotten or abandoned by cancer bloggers as they take back their “normal” lives and maybe stop writing. I dare say they don’t stop thinking and having feelings about cancer, even if they’ve been told they’re cured. But maybe some are too busy, and maybe some make sure they are too busy, so they don’t have to think/feel/write about it?

I don’t feel like I have a “normal life” to reclaim. Receiving a cancer diagnosis and going through the past two and half years of treatment created a huge hiatus in my life and I am now rebuilding it almost from scratch. This too is no bad thing. In fact, mostly it feels exciting.

Without a specific career, employment, partner or children, I feel much freer for now at least, to make different decisions about my life than I could before I was ill. It’s all about perspective, choices, attitude and priorities. I know I’m not having a unique experience here, but nonetheless, as clichéd as it is, I appreciate the opportunity to do things differently and of course I want to write about my experience of that process.

As those who’ve been following this blog will know, I am excited about my List for Living, which I am gaily tripping through. Of course, I want to share my experiences of ticking off items on it, but I also want to review, edit and add to it. Some items are no longer what I want, some having been done leave space for new ones to be added. I can’t possibly have a list that ever runs out, now can I? Where’s the fun in that?

So, I am looking forward to continuing to write and hoping you’ll continue to follow my journey, even if it’s less myeloma-related than before, but I’m hoping it will be very much about living… Not just the fun aspects, but ALL of it. I reckon that’s what being alive is all about.

2013 Mt. McCaleb Cemetery Book Displayed Memorial Day – May 26 2013

Jani and Robbyn finished up the final Mt. McCaleb Cemetery Book Alpha List for Memorial Day 2013 this morning. Then, Jani and I drove the updated book out to the cemetery, cleaned the little kiosk where the cemetery book is kept, and placed our “work of art” in its place.

Judy Malkiewicz placing the 2013 Memorial Day Cemetery Book in the Smith Kiosk at the Mt. McCaleb Cemetery, Mackay, Idaho. 

We put up signs (yellow) directing people to the Mt. McCaleb Cemetery Book location. The Mackay Cemetery Board is going to vote on a more permanent sign indicating the location of the cemetery book in the Smith Kiosk that Earl Lockie has made. However, it was not ready for this Memorial Day.

Contents of the covered cemetery book case (2013 Memorial Day Cemetery Book, scratch paper and pencils, cemetery plat maps, and an article about the Mt. McCaleb Cemetery Book burning up in April 1938 when Mackay City Hall burned to the ground – limiting the accuracy of the cemetery book today between 1901 and 1938.

Jani and Robbyn did all the walking in the cemetery looking for the veteran’s headstones, while I did what people with very low platelets do BEST – one-with-the-sofa. 

However, I think my platelets may be increasing some – I haven’t had any blood from my nose or throat for several days. I’m on Day 18/21 of the Revlimid 5 mg and continuing every other day Dex 10 mg. My energy seems to be a tad better too, especially in the morning when I’m able to feed the dogs, unload the dishwasher, and pick up the house. I’m go Tuesday, 28 May 2013 to have my blood tested at the Lost Rivers Medical Center. If the values are okay, I will not have to continue on to St. Luke’s Hospital in Twin Falls. If the values are too low, we will continue on to St. Luke’s for “rescue transfusion(s)”.
Drove Jani, Rob, Bonnie, and Kris on a Mine Hill tour above Mackay in Jonah. I NEVER GOT OUT OF THE TRUCK – I forgot my camera card, Jani’s camera’s battery died, Bonnie only shot video, and Kris didn’t have a camera —– oh well….here is an old photo.

Jani, Robbyn, Bonnie and Kris saw a bull moose on their walk with the dogs this evening.
And a short video of the same moose later at his link: 

Again, I did what I do BEST while they walked – one-with-the-sofa.

Identity shift

On 16 April, I was eleven months post-transplant. That’s almost a year! And what a celebration I’m going to have for my one-year anniversary, on 16 May! But for now, I’m quite content with quietly appreciating how well things are going, as is my consultant, whom I saw in clinic on Thursday that week. More on both these topics later.

After a six-week break, it all felt strangely alien, less comforting, less like ‘the community centre’ than usual. I saw a friend and one or two familiar faces, but it felt more like the kind of occasional hospital appointment that ‘normal’ people have from time to time, that you attend, see the clinician and leave promptly, to get on with your day – like a place you don’t belong and don’t wish to belong, unless you’re yearning to be a doctor, nurse or medical receptionist.

Going to regular clinic appointments has been a huge part of my life for over two years. As they are now decreasing in frequency, it feels strange, like I have to let go of something that however unwanted and unpleasant, was nonetheless a safe place, where I am amongst peers, people who understand, with whom I do not need to explain, a place where I belong and where very little is expected of me because I’m ill.

As another blogger, Helen writes:

When you have cancer your life is changed for ever. At times it seems to spin out of your control. There are big question marks against all the things you thought were certain.

And yet there is one thing you can reply on. The regularity of your treatment. The chemo sessions and all the other associated appointments are comforting. Having a medical schedule gives your life shape and it gives you back some control.

Three weeks ago, I took my first solo long-distance drive to West Wales (4-5 hours) since the transplant. I had been feeling quite anxious about it, as up till now, when I’ve travelled that far, a friend has shared the driving with me.

A44As I drove, with my choice of music playing loud enough to sing along, the roads clear, the winding pass to Aberystwyth absolutely gob-smackingly glorious, with the sun shining, the sunroof open, sunglasses on – yes, it was THAT sunny day! – I began to notice that I was okay.

I was doing something quite normal, without needing help or rest (or steroids!) :) .
Of course I was tired and needed a couple of Paracetamol once I arrived, but I did it… on my own! And who wouldn’t be tired and aching after driving 4-5 hours?

Great celebratory driving music!

While I was driving, I had a revelation – a minor epiphany. I realised that, for over two years, I have had an identity as an ill person. And I have been ill, so that’s not only hardly surprising, but it’s totally allowed. With that unbidden identity came some advantages, advantages that I am loath to give up. But now that I am beginning to feel well… perhaps it’s time to ditch the old identity? Perhaps it’s time to quit thinking of myself as an ill person? Perhaps it’s time to give up the sneaky advantages? To see myself differently? To take up life’s challenges with a slightly shifted perspective? So I decided to no longer think of myself as an ill person. It seemed like a radical, and slightly scary idea.

Whereas following the autologous transplant, I noticed improvements in my stamina, morale and general recovery on a week-by-week basis, over a fairly short period of time (around 3 months), recuperating from the allogeneic transplant has been much slower and longer, not to mention a bumpier and more anxious ride. At times it has felt like a permanent state, something that would never end – that I would always be in recovery.

To some degree I’d grown to accept it and I’d adapted to it. But although acceptance allows me to be okay with my current reality, adapting to it can be a way to retreat from the world and no longer reach for the things I want, maybe no longer even allow myself to want. Well, if you can’t have or do something, it’s better not to want it than to feel frustrated and disappointed.

So giving up my identity, my status, as an ill person feels like quite a daunting, psychological giant step. But, at this point, a realistic one… Although the recuperation process is not completely over yet, I definitely notice improvements, maybe not week-by-week, but certainly month-by-month. I look back at what I was able to do or how much rest I needed after doing things and I see that these days the doing is more and the resting is less.

Finally and slowly, I’m learning to trust the process, to trust that my energy is improving and will improve enough to have a good life, that my appetite for life is growing stronger and will continue to grow, that I am in remission and that there is a good chance of a long remission. I may have turned some invisible corner…

It’s a strange state to be in. When someone asks me how I am, or, something that happens ever more frequently these days, when someone tells me how well I look, I still find myself wanting to add on a protective get-out clause, a leftover from being ‘an ill person’, like “I’m ok… BUT I do still get very tired.” I am re-training myself to respond with a beaming smile and a hearty “Yes, I’m doing really well.”

No, I’m not exactly the same as I was, I’m not completely well as I knew myself three years ago. I do still suffer with fatigue, I do need to manage my energy and I can’t easily do certain chores without getting back pain, but I have friends with all sorts of pains and conditions that they manage, take tablets for and live with. They don’t constantly tell me exactly how their condition is unless it has flared up or they’ve had a crisis. And more importantly, they get on with life, within the restrictions of their health conditions. So what’s the difference?

Thinking of myself as a well person, or at least not an ill person makes a real difference to how I face life and how I spend my time. Successfully driving to Wales felt like a real challenge and was a gratifying eye-opener. Once I arrived, I applied my new-found sense of ability (as opposed to disability) to pull my weight and play a more active part in activities. Not using my illness, or fear as a reason not to do things. And not needing quite so much looking after, although that’s always nice from time to time… even if you’re not ill.

IMG_1062So while I didn’t do much washing up – that really hurts my back – I did manage to sweep the kitchen floor at the hostel. I wasn’t up to the disorienting hubbub of the large group, but I happily connected with friends in ones and twos. I didn’t go for any long walks or cycle rides, like some of my very active friends, but I did walk up the mount at Mwnt with some of them. Admittedly we took the path with a gentle incline. Enjoying the view from the top and seeing a porpoise was wonderful.

I wonder if the reason I felt so odd at clinic last week was due to my internal identity shift… Maybe I don’t belong there right now… at least not in the same way as I have done for the last two years…?

It’s only a vague sense just now and I feel reluctant to put it into words in public, in case I’m expected to run out into the world, take up full-time work, take up full responsibilities, give up the welfare benefits I receive, give up my blue badge, not to mention other support that I get because I’m ill. I also have a vague unease about tempting fate. But it’s a beginning and the very fact that I am able to willingly embrace no longer being an ill person, is probably a reliable sign that it may no longer be the case.

Out of adversity…

“Out of adversity comes opportunity.”

– Benjamin Franklin

Tuesdays come around each week, regular as clockwork. These days Tuesdays see me going to Derby. Well, it makes a change from weekly visits to clinic… but that was on Thursdays. Anyway, my weekly visits to Derby started last summer through an exciting opportunity that came my way…

A few months after the stem cell transplant last year, I was beginning to feel stronger, a bit more human. I certainly wasn’t ready for paid employment, as I was very much still recuperating, but I wasn’t feeling too bad in between the languishing fatigue and I wanted to do something good with the energy I had. I find that doing good generally makes me feel good and feeling good is definitely part of my recovery plan.

I’ve always been a big fan of voluntary work and have volunteered for a variety of projects and organisations over the years, from mediation to mentoring, narrowboating to coaching youth at risk, reading with youngsters and Playback Theatre. And a few years ago, I initiated a Big Lunch in my neighbourhood to bring people together. Volunteering is a bit of a healthy addiction for me.

So, I had begun to think about volunteering as a way forward… a way to re-engage with people, to do something of value, to gradually re-build my confidence and stamina, to gently test my energy levels without putting myself under too much pressure and to hopefully shake off the growing anxiety and depression that was lurking. But I hadn’t actually made a move until I got a phone call from a friend.

Simon works for Community Action Derby, an organisation that supports local voluntary and community groups. Amongst other roles, Simon takes the lead on a community reporting project called Citizens’ Eye Derby, which uses digital media (video filming, interviewing, blogging) to tell stories and report on issues happening in and relevant to the local community, with the aim of raising awareness and improving life for people in Derby.

When he told me about the project, I thought it sounded interesting and exciting, which was exactly the response he wanted from me, because he wanted me to join the team. I think he also wanted to support me in my recovery. Thanks Simon! x

I had no prior experience of filming, not even making home videos of children or pets doing cute things, but Simon reads my blog and he thought that my writing skills would be an asset to the team. I could learn the filming and editing skills ‘on the job’.

That was back in July and I’ve been a voluntary community reporter since then. When I first started, I was a gibbering wreck, still quite lost in the pit of depression, lacking confidence and feeling that I had precious little to offer. I don’t think I contributed much initially, even in conversation. I was really not in a good place.

But over the months, I’ve not only been able to contribute and come out of the depression (thanks to good support and Fluoxetine [Prozac] as much as volunteering), but I’ve also learned heaps of new skills, and watched delightedly as my confidence has grown. I’ve met lovely new colleagues, both volunteers and paid staff, I’ve interviewed and filmed some really committed, admirable people. I really enjoy the work and the great team we have.

Initially, we worked on short films about different volunteering experiences, such as young people using hip-hop to engage with other young people, older people challenging feelings of no longer being of value, a visually impaired young woman supporting other disabled young people and one of our team members, Debbie’s experience of volunteering at the Paralympics.

As the team have developed skills and confidence, we are widening our repertoire, getting a bit bolder and tackling weightier issues, campaigns and problems affecting people in the community.

Having identified an issue we want to explore, we work in small project teams of 2-4 people. We usually start off by doing some research online or through contacts, trying to understand the issue as much as possible from all angles, to see what is already available in the public domain, including any other films or articles, to see what has not been said or asked and to discover any controversial views on the subject.

We draw up a preliminary storyboard: a flexible outline of what we want to cover, which direction we want to take, etc. Then we contact relevant organisations and individuals to explain what we do and find out if they would like to share their story with us.

The next step is to agree dates to interview and film the participants, having a conversation first about what we and they wish to cover, explaining how we work and allaying any concerns about ‘performing’. As well as speaking to the organisations involved, we especially want to capture the voices of individual local people who are affected, so an organisation will ask their users/participants/clients if anyone is willing to be filmed or recorded.

citizenseyederbyOnce the filming is completed, we usually have a lot of footage, out of which we need to create a film. This involves compiling and editing the clips into an order that makes sense, sometimes requiring a change in the initial storyboard, adding cutaway shots, voiceovers and titles, and finally the Citizens’ Eye logo.

The editing is definitely the longest part of the process, but it is so satisfying when there’s a watchable film that makes a strong point at the end of it. Once it’s ready, we upload it to our YouTube channel and to the Citizens’ Eye Derby website, where one of the team will write a blog post to introduce the video. And then we hit the PUBLISH key!

Please feel free to visit the website and subscribe to the blog if you’re interested to see how we develop.

The first film I was fully involved in focused on a truly supportive mini community that has developed amongst neighbours living in a cul-de-sac. I really enjoyed interviewing Arthur – he was so animated and had so much to share… There was a LOT of footage we didn’t use, as we try to keep the films as brief as possible, to keep the attention of our audience. I’m hoping we can go back to film him again about one of the other topics he was enthusiastic about.

On the weightier side, we recently published a film about the rise in the use of food banks in the city. Derby is not alone in seeing an increase in the number of people in food poverty. Austerity measures are cruel, demeaning and create poverty, not wealth. Sadly it’s a nationwide problem… and this in the seventh wealthiest nation in the world!

I’m very proud of this film because it’s the first project that I led and the project team of Suzie, Rebeca and I worked hard to make it an impactful piece of reporting. I hope you agree.

On the back of this type of work, Citizens’ Eye is now receiving attention and invitations from people/organisations wanting us to help spread their concern/issue, or wanting to share the work they are doing to improve things for the community. This is one of the aims of Citizens’ Eye, to help local people, groups, organisations to share their stories.

Watch out for upcoming films on cuts in supported housing, alcoholism in Derby, the work of the BME [Black and Minority Ethnic] Network and Local Area Co-ordination [LAC] – building social capital at the individual and community level.

As we grow, we also intend to share our skills and offer training to local groups so that they can create their own videos and blogs. With this in mind, two of us have been asked to work with Media Trust (who helped the project with initial training and support), to devise training that we would provide at no or minimal charge to help local groups get started with digital media promotion. This is a great opportunity for me to bring my training experience into play and to work with one of the team members who has a degree in Broadcast Media and professional experience of film production.

If I had not been ill…
If my employment contract had not ended shortly after I was diagnosed…
leaving me with free time without having to go back to work quickly…
If I had not needed to regain my confidence and rebuild my stamina…
If I had not been faced with the adversity of myeloma…
If I had not written about it…
I would not have known that I can write… and nor would my friend, Simon.

If, if, if… I may not have had this opportunity, from which who knows what other opportunities may arise… like maybe making a short film of my own? (See my List for Living).

Thank you Benjamin Franklin, for your wise words!

All views expressed are my own and are not necessarily shared by Community Action Derby, Citizens’ Eye Derby or other members of the team.

Cycle 2 Pomalidomide For Relapse Update – April 5 2013

On 2 Apr 2013 started Cycle 2 Pomalidomide at 3 mg nightly and 40 mg Dex weekly (on Tuesday’s). I consulted Dr. Smith at UCH regarding dropping the pomalidomide dosage from 4 mg to 3 mg since my platelets are so low and liable. He was in agreement.

Had a TERRIBLE day yesterday, 4 Apr 2013 with a left-sided neck ache and NO ENERGY. I don’t know if this was sort of migraine-event or just coming down off of 40 mg of Dex. I haven’t had migraine in greater than 5 years. I didn’t sleep more than a couple of hours in the last 24 hours. I felt so badly, that I did not take the 3 mg of pomalidomide at bedtime.

This morning, 5 Apr 2013, I feel better. Still shaky from the dex, but the left-sided neck ache is gone. I have very little energy and increased heart rate with activity.

The nurse from St. Luke’s Hospital, Twin Falls, Idaho called and said they were faxing a CBC lab test order to Lost Rivers Medical Center. So, I went to Arco, Idaho and had my blood tested this morning, 5 Apr 2013.

My white blood cell count is slightly lower at 2.0 (norms 4.5-11); absolute neutrophil count (ANC) lower at 1.09 (norms 1.9-8.8); hemoglobin lower at 8.5 (norms 12-16); and platelets slightly up, but still critically low at 45 (norms 140-440).

I will go back to Arco on 10 Apr 2013 to have another CBC.

Summary February 1 to February 5 2013

Feb 1 2013 (Friday): Walked Kemmer 0.82 miles.

Saw a not so lucky porcupine along side the road. They are really cute animals.

Feb 2 2013 (Saturday): Walked Kemmer 1.32 miles to the Big Lost River Smelter Bridge. I had upper back pain across my scapula especially on the right side, so I took ½ Percocet, which really helped. I haven’t taken any Percocet since 20 Dec 2012 when I needed it for my post- Bard Power Port placement. Plain Tylenol has been helping adequately with my leg and back pains. I decided to hold my Fragmin injection, which probably wasn’t a good idea. I took ½ Imodium because I am back on Revlimid 10 mg (Day 4/21) and it always gives me diarrhea.

Feb 3 2013 (Sunday):Walked Kemmer 0.82 miles. 

I took ½ Percocet twice for leg pain and “creepy legs”. Started back on the Fragmin 15,000 units injection. I can take 10 mg of dex on Sunday’s and I decided not to take it since I was able to maintain my walking schedule. I had a little bit of chest pain, especially on the left side, which I attributed to stomach acid. I took Pepcid and felt better even though I take Zantac and Prilosec twice daily on a regular basis. My stomach is ALWAYS a bit upset.

Feb 4 2013 (Monday):Didn’t walk Kemmer today because I used all of my available energy to help at the Mackay Food Bank – filling boxes. I wore gloves and mask the whole time – but, I kept up with everyone. I can’t believe they haven’t fired me since I’ve missed so many months.

I decided to take just 7,500 units of Fragmin today since my abdomen is one bigger bruise than it usually is from the injections. I took ½ Percocet twice again in the 24 hours for leg tightness, but I’m sure I do not need it.

Feb 5 2013 (Tuesday): Decided not to take any more Percocet for the time being. I walked Kemmer 0.82 miles. 

Stopped to talk to my neighbor who is here to ice fish on the Mackay Dam…always enjoy our visits.

Used my available energy to vacuum part of the house after a friend carried my inversion table upstairs to get it out of the way. Spent a fair amount of time one-with-my-sofa. In fact, my sofa is a big part of my life every day!

Much Better Energy Today – November 25 2012

I had much better energy today…woke to just over an inch of new snow and shoveled my driveway and my father’s which took about an hour. Came home and vacuumed the house and did more laundry.

This period of time (15 Nov to 26 Nov 2012) has been a chemo break for me following my 1st cycle of carfilzomib.  I had to take 20 mg of dex on 19 November 2012 to end Cycle 1. 

I will begin the 2nd cycle of carfilzomib/dex tomorrow on 27 Nov 2012. This consists of IV carfilzomib/dex Tuesday/Wednesday for 3 weeks with only 20 mg of Dex at the beginning of the 4th week – then a week off.

I start the 2nd cycle of Revlimid 10 mg on 27 Nov 2012 for 21 days too.

Hence, I think my lack of energy was due to coming off the dex more than anything else – although, my hemoglobin (oxygen carrying) is below normal at 10.5 (norms 12-15.5) on 20 Nov 2012. Plus, I came back home to 6,000 feet elevation from Scottsdale, Arizona at 1,510 feet.

Release On Temporary License

I am free. I am free. I am free.

Well, for the next ten days I am free. I am free of drugs. Free from treatment. Free from extreme lethargy. Free.*

I have been released from my treatment prison on temporary license for ten days. Ten whole days of feeling as near as possible to the Emma Jane Jones I like.

It all boils down to energy and having it.

I will make the most of my freedom while I can because I know that on 26 November it all starts again. My week ahead involves friends, cinema, work, friends, family, arts and crafts, friends, baking and films. Bliss.

Ever the sensible one, my home curfew has been set at 22:00hrs.


* I do have to go into the clinic on Wednesday for my end of cycle consultant appointment, during which I will discuss my future treatment options given my disappointing response thus far. I cannot wait for that. My previous sentence was a lie by the way.


EJB: Hi Energy, how was your break? Did you have a good holiday?
Energy: Yes thanks. Five days just wasn’t long enough.
EJB: Well, how about a mini break this Friday? I can do without you for a little bit longer.
Energy: Sure thing. Thanks.