N.B.

On the days when I feel like there is an improvement in my mental capability, I remember that my mobile phone device is full of  blogging material of questionable quality. It’s a responsibility, for I then feel tied down to telling what a lesser person would deem an uninteresting story, whilst simultaneously knowing that I personally, will feel instantly better for sharing and recording, in a way that can never be taken back, whatever the particular shit myeloma has thrown at me during x amount of time between blogs. 

As the earth has continued to rotate, I gave at least managed to hide the evidence of what could form a blog in my iCloud account instead. I guess today is one such day, I have some sort of energy, except, I started writing this blog about ten hours ago and so far, it looks absolutely nothing like I anticipated it would when I started morning. I am fairly certain for example what this will be the only time I mention NHS meals.

Of late, My Myeloma stories are overflowing in my virtual world and my actual mind, and not on my blog. Few people know just how many days I have spent sleeping in a room occupied by strangers or how many times I have been put to bed. There are times I am so confused by it all, that the easiest thing to do to manage it, is to fall asleep and forget it ever happened. I am not even sure what my reality is 100% of the time. I would have no clue at all if I didn’t attempt at least to try to maintain a record. I need a record of this. I want a record of the times I fell asleep mid sentence, or when I canceled plans with my friends and I cried myself to sleep because I saw no end in sight. Hell, I even want a record of my most recent and nightly nightmares. 

Right now, I’m experiencing something new almost daily, and yet I’m not fully documenting it, as I had once documented before, because the something belonging to my sister that entered my body three weeks ago or so (see I do not even know the day) seems to be killing off all my two autos later, surviving, brain cells. 

I have had four weeks of treatment,and of course we are running very close to a certain three year anniversary, so there are no shortages of tales to tell.  I want to tell them but it’s getting close to medication time.

Almost everything I have experienced since my allo commenced is ‘blog newsworthy’ (people write blogs about Stephanie Meyer’s arm hair right?), I just haven’t quite worked out where the energy is to tell you about it. Know I plan to, it might just come later than I actually experienced it.

I used to think that a late blog would be something of a disservice. If a blog was written out of anger for example, like the half written one I found the other morning, time gives me the ability to calm down, to compose myself, and omit the need to rebuild any of those metaphorical bridges that might have been damaged mid rant. On the downside, by waiting, it takes away that raw emotion, the raw emotion heightened by my inability to eat raw foods, and I feel a little bit like I am making things sound easier than they are. I feel like it makes me sound more composed than I am, when I am really not. Not only that, less blogs I dramatically reduces my site’s statistics and my ego likes the notifications. 

If there is one thing I have experienced a lot of since I started frequenting St Bartholomew’s Hospital everyday, it is raw uncensored emotion. Perhaps the fact I am too tired to blog is stopping me from writing something I would regret at a later date. It’s not a lie, it’s just presented a different way. That is what I keep telling myself when I look at my ever growing list of half finished drafts.

I cannot give you any specific examples, for that would really negate the need of this temporary notate bene. Hypothetically, however, I might have written something negative, something along the lines of;

There is still time to jinx this procedure by talking about it now and I most definitely, most adamantly, most whole-life-depends-on-it-do-not-want-to-jinx-this. But and that is a start a sentence with a capital ‘B, But, I do not like Saint Bartholomew’s Hospital. 

And then the hypothetical thought better of it… Like I said, I did not write that down, those thoughts are imagined. If somebody did hypothetically wake up one morning and write that down before they even got up to go to the toilet, I am sure they had good reason for doing so and it wasn’t because she felt the nursing assistance was slightly rude that morning… Hypothetically. Similarly, so too, could something like this have been said, despite me never actually joining any of these words together to make a cohesive sentence;

Every time I have experienced Red Thumping Rage over the last 17 days, I have felt like a teenage brat in great need of a reality check, a slap round the face, a smidgen of gratitude and a slow play replay of the NHS part of the 2012 Olympics opening ceremony.

I could even have imagined images of clutter or me sleeping. Maybe, like I said. I do not know. The negative portrayal of a scientific marvel does not sound like me. 

  
  

I love everything remember? I think my care is great. I love talking about myeloma and myself, and I cannot wait for the time when I have the effort to do it properly, with a proofread. Until that point comes back, we get what we get. 

It’s much like the unpredictable bowel.

EJB x

A BEaUtifUL MeSs

Family Easter Egg Hunt.
That cute little bunny is my grand daughter.

How can I explain all that has gone on in the past several months?  Life just seems to roll along and sometimes I can roll along with it and keep up with the daily normalcy of life.  Other times I have been the rock that silently lies still and immovable as life swirls too swiftly for me to catch up.
So How am I doing?
I am trying to make it through the last three months of maintenance therapy.  It seems to be getting harder.  I have been on 20 mg of Dexamethasone every three weeks.  I take it on days 1-4.  I used to get a little energy on those days but thats seems to be dwindling.  
From about day 5 to to 14 I get severe fatigue, achy muscles, and pain.  I slowly work my way back up and feel pretty good for a few days and then start all over again on day 21.  If all tests are good I should be off of any treatment by September.  If I can hold out that long.  It is SO tempting to just call it quits!  I have too many things to do, projects to accomplish, and people to do it with to spend half my life laying down!  
So that’s the latest report on “How I’m doing.”  I’m just telling it like it is.  

As for the home front it has been filled with great things as well as crisis.  I am writing about these things not to brag but explain how great, as well as crazy my life has been lately.
Trevor and Mallory. UVU graduation April 2011
Mallory our only daughter graduated from Utah Valley University in April.  She received a Bachelors degree in Behavioral Science.  We are so proud of her!  She has worked so hard to get through school quickly and can hopefully Trevor can do the same.

 Our son Jace has been out in the mission field for about ten weeks.  He Loves Puerto Rico and the people there.  Every week we wait anxiously for his next email.  Right now he is in Ponce.  He rides a bike along with another missionary-called his companion.  The companion instructed Jace on the fine art of catching lizards.  So as they are traveling along on their bikes they will catch a few and put them on their backpacks where they stay until taken off.  He has met many nice people and certainly stands out in a crowd.  He said several grandmothers tell him he has beautiful blues eyes.  
    It is so fun to share in his adventure.  If you would like to read parts of the letters he sends home you can go here.
Our two sons at home are keeping life rolling along, as I said before sometimes I can keep up and sometimes life just swirls around me.  Thankfully my husband pulls up the slack and spends a lot of needed time with them.
Last month, my son Trent completed his eagle project,  which took much planning and preparation.  He and several friends painted several buildings at a campground.  The total project took over 100 service hours to complete.  Trent demonstrated leadership and organizational skills to complete it.
   Our church has a very strong scouting program for boys and we really feel like it helps build Young men.  In a couple weeks their troop will go camping and river rafting. 
  Oh also this past month Spencer tested for his black belt.  He has worked really hard and for years to accomplish this goal.  It was more challenging to him then his older brothers,  We are so proud of him for sticking with it.  Now all my family have earned their black belts.  
Joe, Tyler, and Spencer after getting his blackbelt.
(whew stay with me here I’m not done yet.)  
So life has been just rolling along until Thursday May 26.  That evening I really  understood what it felt like to come so close to losing my husband.  As far as we can figure he choked on something and passed out.  When Trent and I found him he was turning blue with sporadic breathing.  I had Trent call an ambulance while I called my neighbor who is a Nurse Practitioner.  I was a basket case- (I guess becoming an EMT is out of the question for me.) Luckily his heart kept beating and he was getting some oxygen.  He was taken to the hospital and ended up spending three days there.  He had aspirated into his lungs so he was kept sedated and incubated for 24 hrs while they cleaned out his lungs and ran every imaginable test.  Nothing was conclusive.  The best possible medical reason this happened was that he just choked on something.  Thank goodness the other possibilities  were extremely serious.  Non-the-less this incident completely humbled us.  

    My body was already worn down from “dex week” and then with this added crisis, I ended up with an ugly case of pneumonia.  I’m sure you can imagine the chaos at our home this past week as he was recovering and I was getting sicker.  I am so eternally  grateful for strong family and neighbor support. 
Me at Huntsman Cancer Institute where I was treated
 March 2011
I have basically written the facts or events of the last few months, however the feelings and emotions are somewhat overwhelming.  It has been hard! and brings plenty of fresh prospective on what really matters.  I thought I pretty well had that covered with getting cancer but apparently the Lord has much more for us to learn.   It is absolutely a “Beautiful Mess” right now but as the song says, “here we are.”  I am still here and my husband is still here and we and our family are in this for the long haul.  But I do thinks its time for a vacation!