I Think It’s Going Okay

One more infusion will get me to the free week of series two, except that it’s no longer free.  It will be free from shots, but since I’m tolerating the meds well, I’m instructed to continue the thalidomide through the free weeks.  The shots leave red patches on my stomach.  They’re starting to resemble a camouflage pattern but I suppose its really chemouflage.  The needle is actually short and small.  I told the nurse she could stand at the edge of the carpet in the Chemo lounge, and I would stand by my chair and hold my shirt up.  She could test her skill and toss it like a dart.  Liability is such a big wet blanket that spoils so much fun.

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Learning To Cycle

I have now been on VDT or in fact VTD, I just don’t know which, for just over a week. In other words, I have been on my new treatment cycle for just over a week.

There is so much to learn.

New drugs means new side effects, which means new good days and new bad days. Maybe it means more good days or more bad days. We just don’t know that yet. All I know thus far is that I am on some drugs, and they come with new side effects. I will put my hands up in the air and admit I am impatient to discover all the side effects, at this very moment, so I can plan my life and rule out the days that whilst I am on VDT/VTD, no longer exist.

I am aware that whatever I have experienced thus far is likely to be the tip of an iceberg. A bringing down of the Titanic sought of iceberg, but the tip of an iceberg all the same. PADIMAC started off easy and then progressively became more and more difficult until I was crying into my pillow on Christmas Day. I hope that does not happen with VDT/VTD, but I would be a fool to think that this was not a possibility. Drugs designed to make you feel better, do in fact make you feel worse. That is the law.

Back to the Now, however, for the future I will deal with, if in fact I have to deal with it. My current side effects are not that bad. Sure, they are omnipresent, and unpleasant, but I am still functioning, so, score!

On a daily basis I have an unknown quantity of shit hanging out in my bowel, but that warranted it’s own blog. By the way, we have got this sorted to every other day. Hopefully. At night time, I experience an interrupted sleep, during which I drink at least one litre of water, which means regular visits to the toilet throughout the night. This is not my favourite thing about life in the dark, oh no. The best thing about the night is the hot flushes. Or at least I think they are hot flushes. Are hot flushes normally accompanied by the sweaty crevice? Well if the answer is yes, I am getting multiple hot flushes every night and I am waking up wet. Well, moist. It depends on the crevice.

I am trying to get myself into a routine, so the thalidomide is taken anywhere within a three to four hour window. Within an hour of taking it, I am usually asleep, if only for a few hours. The time I take it, seems to have no bearing on the hangover I experience in the morning. I describe this feeling as ‘groggy’. I have never been a morning person; I am definitely not one now. I slur until about 13:00hrs, but the key thing my friends, is that I function.

What else is there?

Ah yes, Tin Mouth has returned. It turns out that the taste of metal I blamed on the chemotherapy during PADIMAC is actually caused by the steroids. So, for three days a week, my mouth tastes like a vampire’s wet dream.

I also think the steroids are to blame for ‘extreme’ fatigue, I experienced last Monday and yesterday. There is something so familiar about this feeling. The headache, the bruise like pain in my neck and shoulders, and the total removal of energy from my being. Cosy.

I haven’t mentioned the Velcade… My love of the Cilet Bang is well documented. For the time being at least, it is behaving. I have occasional pins and needles and a tasteful red mark on my stomach. I definitely did not scream ‘fuck off pins and needles’ at my right foot last Friday night, and I am not imagining pains whenever my limbs are resting in my bed. It is fine. Everything is fine.

And that is my new cycle. It could be better, it could be worse. It just, is I guess and the sooner I can get into a predictable routine the better. If only so I can exist around its limitations.

VDT/VTD will not be the boss of me.

Only 15 more weeks to go.

EJB x

A Month’s Supply

I am used to shoving drugs down my gob. Prior to my diagnosis, I was rather terrible at it, which the multi-vitamin tablets with a sell by date of March 2010, I found in my drawer would testify. I am now pretty good at remembering. I may have forgotten one or two doses after PADIMAC ended, but on reviewing the bag of drugs I was given yesterday for VTD, forgetting is not going to be possible. There are a lot of drugs and I fear I am going to have to be stringent with the timetable. I hate a timetable. It is day two and I am already behind schedule with the steroids. I would have liked to have taken them three hours ago. I’ll pay for that tonight.

My name is Emma Jane Jones and I am a drugs fiend. Apparently.

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The above is my month’s supply of drugs. Well, 28 days to be precise. The pile contains all my VTD meds bar the Velcade, which I get to go to the clinic for once a week. The bag itself contains 502 pills and 20 pre-made injections. I also have a further drug left over from PADIMAC, which I also have to take three times a week.

I just did a quick calculation in my head and I do not have enough syringes for 28 days. I will need to sort that. For this incredibly interesting exercise, that though is by the by. Honestly, this blog is so interesting, I am setting you up for a day of fun.

Now you have been warned, I am imagining that my daily drug routine is going to look something like this. Brace yourself.

I wake up, stretch, look at my phone and take one Lansoprazole to protect my stomach with a bit of water. Wait for 30 minutes to an hour before I take two 10mg and a 5mg tablets of MST (morphine), one Aciclovir, which I believe helps to fight of infection and a Allopurinal tablet, which even after a Google search, I do not have the slightest clue what it is for. I know I was told what it’s use was in September. I have since forgotten because the drugs made me, and I have thrown away the piece of paper telling me its purpose in my life.

On Velcade Days and the day after, I also need to take 10 2mg Dexamethasone tablets (steroids, sorry FUCKING STEROIDS!!!). I like to take these as early as possible, so they do not keep me awake. History tells me that they may well still keep me awake.

At some point in the afternoon, I treat myself to another Aciclovir tablet. Three times a week, on a Monday, Wednesday and Friday, this will be accompanied by a large glass of water and a Co-Trimoxazole tablet to prevent chest infections.

Around 19:00hrs, I will gently caress the skin around my stomach with an anti-septic wipe before I stab the area with a blood thinner known as Fragmin. This is required because the Thalidomide can cause blood clotting as well as birth defects in babies. You have been warned.

At Bedtime Garden, I then get to finish my day with another Aciclovir, one 30mg and one 5mg tablet of MST and two Thalidomide tablets. Apparently, it is best to take the latter at nighttime because it makes you sleepy. I can confirm that I had no issues with sleep last night, but it was only day one. I will assess over the next week when it is best for me to take this drug. Interesting huh?

So, the survey says that on a good day I am prescribed 12 tablets and an injection. On a Monday and Wednesday this increases by one to 13. On a Friday, which is currently my Velcade Day, I take 23 and the injection. On a Saturday, I take 22 pills.

It’s nothing really is it?

Well, I also have in my Drug Drawer some Domperidome, an anti sickness pill, that I can take as and when required and the good old faithful Paracetamol.

Remember, you British Tax Payers are paying for all of this and for that I thank you.

Must dash, my stomach is now lined with a fibrous milkshake, so I must take the ‘roids’.

Boom.

EJB x

Pregnancy Prevention Programme

Thalidomide comes with strict controls, especially for the ladies of childbearing years. I am one of those, especially now the fake menopause is ending. If you do not know why thalidomide requires a signatory, Google it. I do not need to Google it because yesterday I was given a very helpful pamphlet entitled ‘Pregnancy Prevention Programme’. If you do not know what that is about, then I will think you a simpleton.

Relax. I’m going to tell you anyway.

So, my new treatment, like the old one comes with regular pregnancy testing. Now, I understand why this is a requirement, but I am still traumatised by the sex chat I had with a senior Medical Trained Person on 22 August 2012 by my hospital bed. I remember the rules and I vaguely remember where my stash of nearing the sell by date condoms live. Did you know that a condom is barrier protection? Well, it is. Tell your kids.

I am used to the humiliation of being exposed to regular pregnancy tests, even though my treatment and My Myeloma means that I may never have children of my own. I assume though, that one must be subjected to such controls because there are stupid people in this world. One such control, which I had to sign yesterday was with regards to the birth control I was going to use whilst undergoing my treatment. It was great, because I was sitting a room with the nice, new, Medically Trained Person and Mamma Jones and when the question came, ‘what birth control method are you going to use?’ I had a quick conversation with myself, wondering how I was going to answer this question. The first point started, ‘well, there is this boy…’, but I shut that one down pretty quickly to ‘have you heard of unrequited love?. Again, I stopped it because nobody needs to be subjected to that. I then moved on to ‘well, I have cancer, my hair is non existent on my head and you just prescribed me a healthy dose of facial hair inducing steroids and I am in bed by 22:00hrs every night, so nobody is going to want to tap this anytime soon’. Again, I did not vocalise that one. Then, I thought ‘shit, my Mum is with me’., but I think she likes to be apart of these discussions, so I am sure it was fun for her. Fun for me on the other hand… We are very close now, my six year old niece made it so. To put an end to my puzzled look, at the Medically Trained Person’s suggestion, I opted for abstinence. At least then, I can say that is why I am not getting routine Special Cuddles. I wish I had this excuse before. I am not expecting a barrage of eligible bachelors taking pity on me anytime soon either. What is really good about all of this, is that if my circumstances change, I get to talk about it with the Medically Trained People. Thankfully, I am a fan of everybody knowing my business, so it’s just an extra person to text, should anybody realise that I am the Bees Knees in spite of My Myeloma. I mean, I am more mobile now.

I then got to pee into a jug, just to confirm that I had not gotten myself pregnant in the last seven days. I was not. Shock, horror. Relief.

And that was it. Well, until next month when I will have to pee into a cup, correction, jug (targeting issues) again, and then hold my breath for the negative because some people are not aware of personal responsibility. Sure, people make mistakes, but I have cancer, so I have to remember Rabin’s Rules. Well, if the time ever arose and I wasn’t a randy drunk, I’d remember Rabin’s Rules.

At least I thought that was it until Mamma Jones asked me the result of my pregnancy test again over lunch. The conversation went something along the lines of this…

MJ: What was the result of your pregnancy test?
EJB: Negative.
MJ: Phew, I thought it would just be Sods Law if you were pregnant. You know… It’s a possibility.
EJB: No it wasn’t. I am a grown up…. Anyway, they did a test last week…. Bloody Lara.
EJB: [uncomfortable embarrassment]

So all you 28 year olds… Try speaking to a parent about that.

It doesn’t matter anymore though does it. I am not a catch and I have taken a vow of abstinence. I hear that it is really fun.

EJB x

Bring It On Please

I woke up this morning, after I had crashed in my bed the day before, knowing that I was ready. Something had shifted. I was ready to start my new treatment cycle, and as angry as I am, moping is not going to change things. So, I woke up ready to attack this motherfucker with drugs funded by your tax money, and I think I am ready its side effects.

Having read the guidance yesterday, I took my time depositing with the greatest of ease this morning because I know that that is going to become difficult again. Bloody shit. Linseed will also be making a return, that’s for sure. Once I was finished doing that, <em>twice</em>, I got dressed. Some would say that I was overdressed for a trip to Daycare, but I do not give a damn. It continues to be my armour. You know that there was a Mac Matte on my luscious lips. <em>Something about me has to remain luscious</em>. Dancing around the flat in my bra and skirt may have seemed overkill, but it made me feel like Sharon Stone and it just confirmed that I was <em>ready</em>.

The chrome coloured lining is that I have been through this before. I know the tricks of the trade and I will use them to make <em>this</em> easier. Upon arrival at the Macmillan Centre I took myself to the Lower Ground Floor where my favourite Blood Taking Man took my blood, because I had the foresight to pick up a blood form yesterday. I then went up a floor to check that my prescription was ready after being deposited yesterday. <em>It wasn’t.</em> I expected this, I have been through it all before, remember? So I smiled politely and said I would be back. I made my way up the Second Floor also known as Daycare, at 11:00hrs. The best time to receive drugs for you get a free lunch. I did not need to check in, I just said hello to my favourite iPhone Loving Receptionist and that was it. It was like the last three months had never happened. The Medically Trained People were saying hello, seeing how I was and I managed to be glued to my iPhone, iPad and iPod all at the same time. It was normal. A normal to which I have become accustomed since this all started six months ago. When I was called over, a mere ten minutes later, I made my way to my favourite red seat next to the power points and settled on down.

Now, I said to the Medically Trained People yesterday that I wanted to be in and out in an hour. It was actually 90 minutes, but I will let them off that because I asked for some extra drugs yesterday and I was surprised to find this waiting to be administered today. That meant a cannula, but I love the Zometa too much to complain. Cannula’s are not a regular occurrence with VTD.

So there I sat, in my favourite red chair getting the drugs and knowing the forms. I was all zeros today, which means no side effects. That will come. I had my blood pressure taken sitting and standing. They didn’t need to tell me, I knew that was coming too. If this is what I have to do once a week, then so be it. I am ready.

At Velcade Time, when the second nurse arrived, I excitingly declared “Emma Jane Jones. 24th of the 5th, 1984. In the stomach please.” And that was it. It was done. Well almost, my nurse, who had evidently never met me before insisted that I had a blue book to record my appointments. Like I said, she clearly had never met me before. As with PADIMAC, that book will last a week. I do not forget my appointments. I then picked up a blood form for next week and got the lift downstairs, where I collected my bag of goodies, which by this point in time was ready. ID at the ready because I was collecting a controlled substance.

Tonight I have to give myself an injection and take my thalidomide and that will be my Day One done. It’s like the first time all over again.

So I finish as I started. <em>Bring. It.On.</em> <strong>I am ready.</strong>

EJB x

P.S. If you want a laugh, try listening to me pronounce ‘thalidomide’. It’s impossible I tell you. Impossible.

Day 4 / Treatment 2

I just got home from my second Chemo treatment. In official Chemo Lingo, that would be Day 4 / Treatment 2. So far, any effects I’m feeling have been very minor and fleeting (but hopefully the good effects are going on inside like they are supposed to). Day 1 / Treatment 1 was Monday, February 25th. It was a longer stay, including an IV and a visit to the Chemo Lounge. If all goes well, I can avoid having IV’s or a port, and get my Velcade shots sub-cue. They have a polite medical term for sticking a needle in a handful of flab, I forgot what they called it, but that is subcutaneous. After the hospital visit (and every evening of the two “on weeks”) I go home and take about 15 pills. One is the other main component of my Chemo, that’ the Thalidomide pill, a hand full of small steroid pills, and some other assorted pills, some I take daily anyway.

This will go on for three cycles of two weeks on and one week off. At the end of those cycles, I will be re-evaluated and may get another cycle or two, and then maybe a stem cell transplant.

Thank you for your prayers for Diane and me, for all the kindness, and for asking how we are doing. A lot of folks are very private about their medical concerns, I probably talk too freely about mine, but blessings have come from that. You and others telling me you are praying are blessings; some were very unexpected. One said they don’t normally pray, but they are praying for me. That fills my heart with hope.

Still Waiting

Still Waiting

SURPRISE!

Last Saturday, Diane and I were invited to our friend’s house for dinner. It turned out it was a surprise party for me, a show of support before I venture off into the world of chemotherapy. The house was nearly full of kids. Well, when I met them they were kids. Now, many of them have kids of their own. Almost everyone there had been in a high school or middle school youth group when I had been a helper or leader. I always thought some sort of reunion would be amazing.

Mike, I understand it was your idea. Nathan, I’m told you were in on it from the start. Marika and Addie, I know you had a lot to do with making it happen. Thank you. You could not have done a nicer thing for me. I don’t know how to express this better. It was the nicest thing. It was awesome to greet and hug everyone. I miss my friends and the time we shared in the youth group.

I had to tell everyone that my treatments were postponed one week due to an issue with my insurance company. My oncologist planned on using Velcade and Revlimid, a combination she has used for Multiple Myeloma patients many times, but apparently not with patients who have the same insurance company I have. The letter I received disallowing prior authorization of Revlimid said in part, “Our doctors and pharmacists study the safety and effectiveness of drugs to help you choose those with the best overall value,” and ended with, “Please let us know if we can be of further assistance to you.”

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A lot of the kids in this picture made it to the party. I will post a newer version soon.

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Friends at the Surprise Party

So, my treatments begin Monday with Velcade and Thalomid (Thalidomide). I’m hoping one of them will knock out this cold and ear infection.

Going Loopy

Have you seen the film Julie and Julia about the young woman who decided to make every recipe in Julia Childs’ book and blog about it?  I seem to remember seeing a blog where someone was knitting every sock in a sock book.   Now although I am quite infatuated with Comfort Knitting and Crochet Afghans I wouldn’t contemplate doing every single one as there are several that I would have no desire to make – this being one that fell into that category…

It’s called Flokati after the greek rugs it’s based on and is supposed to be knit.  Once I’d got over my initial ’Oh no!’ when I was asked to do one I did this…

and wasn’t happy with it for a number of reasons – the stitch was messy, my first lot of loops weren’t loopy enough and some attempted to disappear to the back side (as it were), I made the second lot bigger but they still seemed loose so after finding a more satisfactory looking, but very time consuming, loop knitting method on the web I decided to try crocheting – I had crocheted loopy ears for the toy spaniels I did last year but couldn’t recall where I’d got the pattern from.

I tried a stitch in the Vogue Knitting Dictionary of Crochet Stitches (the left hand side of the photo) but wasn’t convinced that those loops would be stable.

I got another method off the internet but as can be seen from the right hand side of the photo it somehow got wider and I didn’t like the loopy side either…

Then I happened upon a free Loop Stitch Pillow pattern on the Lion Brand Yarn site and was more than happy with it.  It was easy to do, didn’t involved making the loop on one side and then moving it to the other and looks like this up close…

three rows of double crochet (US – single crochet) and between each loop stitch row.  When tousled to hide the in-between rows it looks like this…

On the rear every fourth row is a bit uneven…

but who’s going to see the back – apart from us.  In total it measure 74 cm (29″) by 94 cm (37″) and is in aran (worsted) weight yarn on a size 5.00mm hook and has probably cured my aversion to any large area of loops.

Plus here’s another pic worthy of note…

In case you’re wondering that would be two, yes two, empty washing baskets.  All the clean washing as of today is ironed and put away or just put away.  B nearly sabotaged this when he did some more washing just before tea but fortunately fresh from the dryer nothing needed ironing.  I think this is the first time since I got home at Christmas, or possibly the second, that we have had a clean laundry free zone in the back bedroom.

I think it’s safe to say that taking the Thalidomide (200 mg) earlier in the evening, 8 pm o’clock being the optimum time for me – having moved from just before bed, so about 10.30, and having tried various times between then and half seven.  I’m still not that good in a morning but I never have been but am getting up easier and do feel significantly better later in the day – which is just as well as the Peritoneal Nurse called this morning to confirm that she can start my training tomorrow after Haemodialysis.  YAY.

Taking the Thalidomide earlier hasn’t made any difference to my forgetfulness and in fact in telling you about training tomorrow has reminded me that I need to make some butties to take with me!

Hiccy Burpy to me

Hiccy Burpy was on a card I got a friend years and years ago – it featured drunken frogs.  It really amused me.  B says it doesn’t take much but I found this particularly amusing.

Its been a lovely bright sunny day

(photo does not do it justice)

B and I went to a friends for tea yesterday where I got a cake with four candles in it and a rousing rendition of Happy Birthday by a quartet – minus the one member of the house who’s actually in a choir.

We discussed going out for tea ie, I suggested we go to the one pub within walking distance, take Bud and sit outside – B thought this idea sucked as it was so nice we wouldn’t get a seat outside so we decided on an Indian takeaway, after neighbours and eldest nephew suggested newish Indian restaurant we decided on this, we didn’t know opening times, they weren’t open when I phoned, B and Bud got back from their walk and I suggested we call on the way back from dialysis tomorrow and have an Indian takeaway tonight!

Bud got to have the chicken tikka but everyone declined the salad

Here’s some other pics…

 

Yoga Frog – The Tree

After an inquisitive visit from the small furry family member…

it was a fallen tree – making him jump.  Bud did like the box too

‘I just caught it, it was trying to escape’

I felt bad taking a chunk out of Tatty Ted but he tasted yummy

Wonder whose legs those are

These were off Bud.  I tapped B on the arm nine times and asked if that was how Bud has requested them.  B looked at me quizzically – ‘Nine times.  After eight.’  Not as funny as I thought apparently.

New shawl, PJ bottoms and socks

Look I’ve got five o’clock shadow – not to worry we’ll get rid of that next DT-PACE

‘What are you doing?’

‘Come here my pretty’

 

‘Hey! That’s my behind – get your own.’

‘I’m not very happy about this – you know I don’t pose’

My sister in law is improving her crochet skills daily – like this tag.  It’s really funny/strange watching her crochet left handed.

Sheep – the source of hours of pleasure and not just for the Welsh

On Friday when Prof realised it was my birthday today he said ‘Well done’ and I nearly piped up ‘What for getting to another one?’ but although I’ve been taking the Thalidomide earlier (7.30pm to 8.00 pm) and this has made me perkier earlier in the day, I still need a bit of a run up to get to smart a*se mode.

Then today when all three of us were sitting on the settee and I’d finished opening the presents and cards I had at the time I sat there and started getting teary – I did leak a little bit.  B asked me why I was crying, was it because of the cancer.  I said no.  He said ‘You wouldn’t be crying if you didn’t have myeloma.’   When I could trust myself to speak without bawling I said ‘I know no-one knows what will happen and lots of people don’t make their next birthday but I’m just so grateful that I did.’

No MORE THALIDOMIDE for Jude – March 21 2012

Slept here at home continuously because that’s all my mind is up to – SLEEPING – I CANNOT THINK and I am unstable on my feet. Then, all day long, I lay on the sofa and slept some more. I cannot do the computer, send an email or anything. I AM NOT TAKING Thalidomide ANYMORE and did not take any tonight.

My guts are raw, but I am able to eat and even feel a little better after I eat.