Decorum

There were two events yesterday, two and a half really, which proved to me, if I needed anymore proof, that I now have absolutely no decorum whatsoever. The subject in question, was of course, my faeces or my lack there of.

Everybody requires a little bit of context and this is mine. I am currently on six tablets of docusate sodium a day plus two senna pills before I go to bed, and still, despite this hefty dose of laxatives, going to the toilet continues to be the bane of my daily existence. In case you were wondering, myeloma is the bane of my world. At least once daily, I also have a portion of linseed, which I believe gives the medicine a healthy, natural helping hand. Linseed also means I occasionally have to visit a Holland and Barrett, thus allowing me to feel superior to the unhealthy masses, that is, until I look in a mirror.

I have long been of the opinion and voiced it several times, that constipation is one of the biggest, unspoken downsides of my medical predicament. I had an appointment with a Senior Medically Trained Person recently, who I had not met before, but Mamma Jones once saw on the television and I instantly took a liking to him when he asked me about the difficulty of my bowel movements.

In that appointment, he told me that one side effect of the radiotherapy would be a slightly jippy tummy. It was a statement that solidified my positive opinion of him. I have now had three sessions of radiotherapy and that particular side effect is yet to appear. I am forgiving him of that, if in a few weeks time, I am able to sit on the toilet without a fear of snapping my spine in three when the struggle ups it’s game.

That is the unsavoury background to my daily (if I am clutching the glass half full), trials and tribulations. I will indeed talk about them to anybody who is willing to listen. The only difference is, depending on the company, I might deepen the code of the subject in which I speak.

Yesterday then, I had a particularly traumatic morning. I had to be up and dressed by 10am, ahead of the Patient Transport Service collecting me for my two hospital appointments of the day, the first of which, was at midday. The PTS can pick me up anytime between 10:00hrs and my appointment time two hours later. As such, stage fright usually kicks in and I cannot pass what needs to be passed because I need a clear 30 minutes to do it. Unfortunately for me, the biological need kicked in around 11:15hrs, shortly after I discovered my transport was not in fact, picking me up at the agreed time. In a panic, I booked a taxi and then visited the room between my kitchen and my bedroom. It was an act that was indeed a mistake for there was not enough time for me to do what needed to be done.

This brings me to my first example. Mid act, I had to give in. As I uncomfortably made my way through my flat to the waiting taxi outside, I said something to Housemate that does not need to be repeated here, such was the level of my crudeness. All that needs to be said is that it Is a term usually reserved for the delivery room in a hospital.

It was a very uncomfortable taxi ride, during which, it became apparent to me that I was going to have to be late for my counselling appointment at midday. Not wanting to be rude, I thought it necessary upon my arrival at the Cancer Centre to inform the relevant people that I may be a little late to my appointment.

Most people would probably have asked the the lady on reception to inform my counsellor that I would be late and send my apologies. Not me. In my second example, the conversation went something like this:

“Hi, I have an appointment with Sxxxx at midday, but I am going to be late…. I have a problem. Not a bad problem you understand, but the one people get with their medication that they don’t really talk about… You know… Um, I just really have to go to the toilet and I’m really uncomfortable and it might take a while. Can you let her know? I’ll go down to her office when I am done.”

It was a conversation that was greeted by a knowing smile, and off I went. Fifteen minutes later, with a large smile on my face, I returned to the reception desk to see smiles all round. I then proceeded to discuss matters in more depth for five minutes more.

Later in the day, I received a text message from a dear friend of mine, who is also experiencing similar woes, and what followed was a lengthy, open discussion about my troubles of the day and the effectiveness of linseed. It was that conversation that confirmed what I have long known… Cancer causes constipation and I absolutely love shouting it from the rooftops.

Surrender

There comes a time in everybody’s life when they have to surrender. They have to give in. Their hands are tied. They have to retreat. They are getting ready to wash their hands.

I am at such a point. I am at the end of my tether. I am waving the white flag.

I am finally ready for the laxative.

Please do not be disappointed. I no longer have the time to be constipated. Whilst we are on the subject, I do not have the time for the other thing either.

Yesterday, I realised after spending two hours on a ceramic bowl sweating through my nightie, that I was fighting a losing battle. I can recall my 17 month long reason for not taking laxatives but my enemy has changed, and I do not think my weapons are strong enough. I am too busy to remember to prepare and eat linseed everyday. The fortnightly velcade injection is preventing me from forming a routine, and it is keeping me on my toes with its unpredictable attacks. For two months, I have been unable to take my eye off the ball due to a very real fear of being caught short. I am fighting on my own. In this fight, it is not fair for me to slip my bowel woes into conversations with Housemate when he returns from work. Nobody needs to know. Big Sister is also not prepared for my observation on the frequency and odour of my wind. It is not right.

Enough is enough. My head is bowed.

The truth is, there is not enough time between my injections for my body to regulate and there is too little time between my injections for my body to get used to the cleaning product. It is torture or at least any torture I have ever known. Two months of it.

So, with the treaty signed I really home with these laxatives that I, Emma Jane Jones will be able to start making regular, erm, reparations.

EJBx

Rite of Passage

Few people, unless they have been in the position where they have had to take strong drugs, will truly understand how said drugs can disrupt your body. Even when you think you have been there and got the t-shirt factory, it can still take you by surprise. Despite the fact they are designed to make you feel better, in the short term, they make you feel quite the opposite. They make you tired, they make hungry, they make you lose your appetite, they make you sick, they weaken your heart and so on and so forth, until we get to their secondary role as a butt plug.

Currently, I am trying to learn and understand what the fortnightly payoff is for having a poison injected into my stomach. There is always a payoff and a debt for goodness, and I’m adjusting to that once more. I know what the velcade side effects look like when they are accompanied by other hard drugs, but I do not know what it looks like all on its lonesome and this has me ready to pounce on any change in or on my body.

My post transplant world, fraught with its own issues and darkness, is the longest I have gone without hard drugs, since all this started. The beauty of this little factoid, is that it enabled my body and my system, should we say, a chance to regulate, a chance to acclimatise. Just as I have had to get used to living with this, so too has my body. The problem however, as I am discovering as I type, is that everything and anything that is not the norm, wreaks sheer havoc on my insides. I am mainly talking about drugs here, but it also applies to bacteria. I think an episode last week involving some past its sell by date bean curd made Housemate never want to sleep with his door slightly ajar again… On the other end of the scale, when I was forced to take Oramorph, I made the deal with the devil, which allowed me to sleep, but stopped be from doing something rather special, for a whole week.

At the moment, I know that my limbs are more prone to numbness than they should be. I have had my phone resting in my right hand for a good 15 minutes now and the sensation in my right hand particularly, is not a pleasant one. With my two injections to date, I have been kept up once with the desire to chop my left arm off, as I was aware of its presence and only it’s presence. The neuropathy is the easiest thing to measure. It’s the same as it has always been, and velcade has always been its cause.

More difficult to measure is the fatigue. Fatigue is our plague. I am tired pretty much all of the time, so it is difficult to separate the causes. After each injection I ask myself and others whether I am tired because I am just tired, or am I tired because I have just had bleach injected into my stomach? It’s too soon to be able to answer that question. Not that it stops me from hypothesising.

Of one thing I am certain. I had my last injection 9 days ago and since then, I have managed to empty my bowels two and a half times. The same thing happened a fortnight before. Another deal with the devil, eh?

On the above, I can whinge and I can moan, and I do whinge and moan, but I also need to just get on with it. It is a payoff; maintain a remission for little discomfort here and there.

The truth is, I know it could be so much worse, so it just has to be dealt with. It’s part of growing up.

EJB x

Movement

After a lengthy period of the trots, I am informed that some individuals, may experience constipation. When one is taking six drugs on top of other drugs, which is said to lead to blockages, a person may experience constipation. When a body subject to change, experiences a lot of change, I imagine, a human, may experience constipation.

The Medically Trained People expect some difficulty in this area, and persons who may be troubled by infrequent stools, are offered medicine, to ease the process along somewhat. Some individuals opt against using this medicine because it makes their insides feel like they are on fire, regardless of there being a need to incinerate their waste or not. Such people, let’s call them patients, may suffer from lengthy periods of constipation, especially, when they usually use their diet to regulate such things, and they currently do not have a diet to speak of. Tricky.

Sometimes though, life cannot be that bad. Life cannot be that unfair. And so, today, after a six day absence, it gave me great pleasure to say “welcome back Buddy, welcome back”.

Thankfully, it was a painless reunion.

I called my Mum.

EJB x

Clogged

I am going to spend my day waiting to get poorly. If that doesn’t happen today, I am going to spend all day tomorrow waiting to get poorly. I have been told what symptoms to look out for over and over again; the squits, vomit, mouth pain and fatigue. Done. Squits, vomit, mouth pain and fatigue. The emphasis on this story is the squits. I am expecting, and have been expecting lava.

So imagine my surprise this morning when I realised that I am clogged up. That’s right, the increase in medication has made me constipated. I was not expecting this.

Fortunately, Mr Constipation and I have met before… He’s not going to know what’s hit him next week, neither, I suppose, will my anus.

EJB x

Relapsed High-Risk Myeloma – Update May 17 2013

So, how do I feel? Just to remind you,  I’m in Cycle 1 of Bendamustine/Revlimid/ Dex, which began 7 May 2013. I have only 5% normal bone marrow function with 95% plasma cell infiltration.

  1. You only received the Bendamustine IV Day 1 and 2 of the 28 Day Cycle.
  2. This is Day 11 of Revlimid 5 mg on the 21 day cycle. I seem to be tolerating the Revlimid okay except for days of diarrhea treated with Imodium, followed by constipation, etc.
  3. I continue to take 10 mg of Dex every other night. I forgot to take my Dex one “due night” 16 May 2013 and the next day I felt like a person made of stone – could barely move around and get from laying or sitting to standing – it was REALLY HARD. All of my bones hurt, especially my left arm with the hardware and screws and by back – so, I’m NEVER going to miss my Dex dosing again, even though I look so puffy and have the appetite of an a wolf.
  4. I will finish my Z-Pack antibiotic for the sinus infection tomorrow 18 May 2013. I’ve had thick – copious – NASTY drainage (I’ll spare you the photo, but you know I have one) and I might need to ask Dr. Padavanija for second round of antibiotics to clear this up a bit more when I see her again 21 May 2013. The terrible pain I had in my left sinus area is much improved, although I still have a bit of left-sided neck – headache.
  5. Holding Aspirin 81 mg while platelets are so low.

Amazingly, I feel pretty well – especially in the mornings. I am sleeping better now that I am taking 5 mg of Xanax at bedtime. 

I have to be careful since my platelets are only 18 (norms 140-440) not to bump myself, fall, or do anything that might start bleeding, because it is unlikely we could get it to stop and I’d bleed out OR have a stroke – so, I’ve been doing a lot of couch potato computer work and watching Jani and Faye WORK around me!!! and I mean WORK – 2 days of cleaning.

BED CHANGER – So work work work was the order for the day.  Here is Faye, the changer of beds!
TOILET CLEANER…..and the cleaner of toilets!

TRANSPORTER – And of course transporting cleaning supplies.

LAUNDRESS – Here’s Faye tending to laundry duties!

BUSH PLANTER – Faye the consummate gardener.

POOPER SCOOPER – Faye tends to tidying after three golden retrievers.
LAWN MOWER – Here’s Faye mowing the lawn, appropriately attired in boots with adequate eye protection.
WEED WHACKER – And no lawn duty is ever complete without expert trimming.

FLOOR WASHER – Here’s Faye relishing washing the kitchen floor on her knees!
SCANNER EXTRAORDINAIRE – Faye, who is also technologically gifted, helps with scanning 9 million documents for Judy’s genealogy projects.

VACUUMER -And now it’s time for vacuuming and vacuuming and vacuuming….remember the 3 trievers aka hair-balls!

DISHWASHER – Faye is also an expert dishwasher!

CARWASHER – Faye’s talent extends to washing Jonah.

SLACKER – Faye get a very very brief break and a tiny yogurt snack – aren’t we generous!
FAYE, Ph.D. – Faye inherits Judy’s regalia cap – looking smart and so multi-talented!

And with all the work complete, now it’s time for some farewell photos.






Until we meet again dear Faye.

And now the CONTEST 
This is a REAL CONTEST

Some of the Faye photos were staged and some were real. Which tasks were STAGED?
Below in the “COMMENTS”, list those activities that you believe were staged. It’s okay to be Anonymous in the comments, if you win, I’ll get your info later.

The 1st person to correctly list the staged activities, will win this authentic MACKAY, IDAHO one size fits all – cap (will be mailed to you only if you live in the USA).



All good adventure stories need a CONTEST!



Better Out Than In

Better Out Than In, that’s my motto. It’s my motto for every aspect of my life; not just for my faeces. Holding stuff inside you, I find, just manifests into something much bigger, heavier and uglier, and before you know it, you look just like the woman in the new advert for Senokot. Uncomfortable and ready to cry/stab somebody with a lollipop stick.

I am a human, and thus I am fragile, I am not infallible, and there are times when my body and me to not heed our own advice.

Not this last week….

It gives me great pleasure to announce that for the last seven days, I have woken up to the natural desire to play sudoku in a room in my flat (or Mamma Jones’ house) that is not my bedroom. For about five minutes. There may have been two occasions after the first puzzle, where I may have had to use a quick cheat to help me through a tough spot, but that was only because I was being impatient. Regardless of that, and I thought I needed to be honest, I am proud of my body. I cannot remember the last time it wanted to play sudoku seven days in a row at roughly the same time everyday. It won’t last, but it makes me feel better, laying down, depositing, those numbers. Better out than in.

Clearly, when things such as this, work normally, I do get a slight fear that my treatment is not working. When I am very ill, bedridden with side effects, I have to tell myself that it is only the treatment working overtime and it’ll be worth it in the long run. The problem with that logic arises when things are hunky dory. It’s fine though, because I really have been super tired this week, so, I hope that’s enough. It cannot be all His tit to my tat.

A much lighter and cleansed,
EJB x

Clogged Systems

I backed my car out of the garage and neatly ran over a folding aluminum chair that was holding a number of car washing accessories. The aluminum tubes making up the chair wrapped themselves around the axle, and turned with the motion of the wheel. It sounded like a blind man trying to find his way. tap tap tap. I stopped the car and looked underneath to see if I could do something about the new vehicle accessory, but being a cripple pretty much limits my list of physical abilities. I sighed and returned to the drivers seat. I simply had to get to the drug store. I’m not sure if it was all of the cheese in the last few days of meals, an abundance of salt in the chili without beans I ate the day before, but let’s just say that the works were stopped up. It was at the point where I had to do something about it.

I drove up the road towards the little strip mall a few blocks away and the little drug store nestled between a massage parlor and pizza joint. The loud tapping noise the car made caused people both inside the large plate glass windows and out on the sidewalk to gawk at me as I navigated my van into a handicapped parking slot. A passing woman had two children in tow and she pulled them near in a protective action as she looked at me. There was compassion in her eyes; the same expression I see on veterinarians just before they put the family pet to sleep for the last time. I crawled into the back of my van and unclamped my scooter from the retaining straps that keep it from pinballing itself around the interior. Hitting the switch, the door opened, the ramp extended and I drove out. I’d just gotten to the bottom of the ramp when my attention was called to the fact that I’d forgotten to disconnect the battery charging cable. It’s a thick wire that hooks my scooter to the vehicle battery system to keep it fully charged. The wire snapped taught, the scooter stopped dead and inertia tossed me onto the tarmac.

Bummer. I crawled back onto my scooter, and after disconnecting the cable, rolled my way into the store. When I was young, my mother talked me into stopping by a drug store to pick up a few items needed for the family. I presented the list to the clerk who read it aloud, and yelled to a worker back in the pharmacy to bring some tampons to the counter for the “nice looking young man.” I was not at all complimented by being called a handsome young man, I was too busy being embarrassed at the association between me and a box of tampons. It didn’t help that a few people in line giggled at my discomfort. Today’s trip could be all the more embarrassing, after all constipation is an icky subject. I certainly wanted a bit of stealth involved in my mission, and I’d already made a spectacle of myself in the parking lot.

Rolling around the aisles, I finally found the shelves containing laxative products and began to look for the big guns: enema kits. As I was running my eyes over the different packages on the shelf, a clerk wandered over, ready to be helpful. I could tell because he said “May I help you find anything?”

“That’s okay.” I said quietly. “I think I’ve got this.”

“Do you need a laxative or an enema?” he boomed. He spoke loudly enough that the other people in the store all looked over.

“I can find it, thanks.” I said.

“We actually have a pretty good selection here. Everything from Docusate and Sennacott to Fleet. We have generic laxatives too. How plugged up are you? How many days have you had trouble going?” I could have sworn that everyone in the store leaned in to hear the answer.

“I’ve got it, thanks.” I said again. I had taken a generic product from the shelf.

“That’s a pretty good one. Just as good as Fleet enema but a third less money. Do you need any instructions for use?”

I stared daggers at the clerk. “Hey buddy. Are you constipated?” I asked.

“Why, no.” came the reply.

“Too bad because right about now I’m thinking of kicking the crap out of you. Get away from me.” I growled.

“Yes, yes. For sure. Constipation can really put a sufferer in a bad mood.” said the clerk.

“So can clerks with no sense of customer dignity. You’re embarrassing me. Now, would you please go help someone else?”

“Sure, sure.” he said. Then he called out to the girl at the register: “Mary, ring this man’s enema kit up for him, will you?” He scampered off towards the rear of the store. I rolled sullenly to the register and handed over my purchase along with my debit card.

Back outside, I rolled back up the ramp and into my van. Climbing into the driver’s seat, I pushed the button that retracted the ramp and closed the door. I backed out of the parking spot, changed gears and began to drive out to the street. A few people were smiling widely and pointing to my car. My face was superheated from humiliation and it took me a minute or two to realize that the battery charging cable was hanging out of the door and dragging alongside the car as I drove. I reached back trying to grab the cable and maybe pull it in enough to keep the connector from dragging on the street. I pressed the brake to slow as little as I did this, and my scooter, which I hadn’t strapped down, rolled forward and smashed my fingers. I screamed a scatological epithet.

Then thought how ironic it was that this is what the whole trip had been about.

Pomalidomide (Pomalyst) Update For Relapse After 15 Doses – March 19 2013

Tuesday, 19 Mar 2013: I’ve taken 15 doses of Pomalidomide (Pomalyst) in Cycle 1 for my relapsed myeloma. I should have had my blood tested today, but Dr. Padavanija is out-of-town and they scheduled me for Friday, 22 Mar 2013 at St. Luke’s Hospital in Twin Falls, Idaho.

I’ve decided that I’m way too puffy and effected from Dex 40 mg weekly on Tuesday’s, so I lowered the dose to 30 mg today, dividing it in 2 doses (breakfast 15 mg and dinner 15 mg). I’ll discuss this with the doctor on Friday at my appointment.

Again, the St. Luke’s Hospital MSTI Boise Pharmacist called today to check on my Pomalyst side effects. Not much different than last week except I am constipated.

  • burning scalp (improving a lot)
  • creepy legs (had before I started Pomalyst, but seems worse at night – haven’t taken much oxy this week (maybe two doses of 1/4 tab).
  • increased neuropathy of left leg especially from knee to groin – was about a 2 (1-10 scale) prior to Pomalyst and now 4. I am attributing my left hip pain to neuropathy now since all of my tests (plain x-rays and MRI were normal). At times, I had right hip pain too.
  • tired, especially after taking – serious fatigue each afternoon – can’t do anything. Easily out of breath, but lungs are clear with no cough. Don’t let these walk photos fool you in to thinking I’m leading a normal life – I AM NOT!
  • constipation – working with 2-3 Senna-S nightly and 2 Phillips Magnesium tablets nightly – without much success. Experience GI reflux on dex day (Tuesday).
Monday, 18 Mar 2013:  No gastritis at all this day. Walked the Mine Hill with Jani and the dogs this afternoon. 0.71 miles at a 4 percent grade up and then down to Jonah at the Cattle Guard. Jonah had a flat tire over the weekend they found a nail in the tire this morning.
Kemmer and me. ICY COLD WIND

Jani, Zoe, Kady, and Kemmer with Mt. McCaleb in the background – Jani ended up walking the Kemmer and Zoe (sisters from the same litter who will be 5 years old on 6 Apr 2013) all the way home and I drove from the Cattle Guard with 12 year-old Kady.

Monday night into Tuesday, I had terrible neuropathy and creepy legs and was unable to sleep…most probably from the Mine Hill walk Monday.

Tuesday, 19 March 2013: I was too tired to do much today. Jani went with Ron rock hunting.
She found a geode.

And a lucky horseshoe for me!



Dumping

If one were to rewind three months to the last days of PADIMAC, I believe I would have said that there was one thing I would never take for granted again. It’s something every able bodied person can do, even babies. At the time however, I was not able bodied. I was stuffed.

Fast forward to last Friday, after nearly three months of being treatment free, and I can honestly say that I had once again started to take my natural right to deposit, for granted. Then this VTD came along, a rude reawakening for those of us unfortunate enough to have to go through cancer treatment. Gone is the morning routine. Gone is the morning reprieve. Gone is the not thinking. In their place is an indescribable feeling of discomfort that makes you want to rip out your innards. Approximately 5lbs of discomfort… I would imagine.

Everything about having myeloma is difficult, but this side effect is my worst, because let’s face it, pooing should be simple. Every toilet based joke hinges on this assumption.

One day, the Medically Trained People may design a chemotherapy drug that does not make one feel the need to gentle coerce their waste out by talking to it, whispering sweet nothings, insisting that there is no need to be shy and that it is better out than in. I imagine some people would do this, I am not saying that is what I did this morning.

It is strange to think that I am now back in the position where a nice bit of splash back is worthy of celebration, but unfortunately I am. After Housemate left this morning, I celebrated. I celebrated for the first time in four days. That’s right, four days. In case you were wondering, that is 16 meals including a curry, a tin of baked beans (half cold, half heated), a mug full of linseed, prunes, a banana and three birds eye chillies.

Sometimes, shit just is not fair.