The University of Cancer, Part 3

Ripples in a Puddle

Ripples in a Puddle

I tried to get ahead of spring in late January. I prepped my flower beds with bags of topsoil. I stirred the mucky surface saturated with winter rain. Then, more rain interrupted my effort and I contracted a couple of acute upper respiratory infections. These, coupled with what has evolved into an intolerable treatment regimen, made yard work difficult. The rough patch persisted and I became so tired of being so tired.

Spring doesn’t wait. What is done, is done. I make amends for the delayed dreams of January. I’ve ordered flowers. I’ll plant a couple of tomatoes in the sunniest spot. I hired out the pruning of the burning bush hedges, the laurels, and lilacs. I fertilized the lawn. I play catchup, utilizing the energetic days to spread weed-ex and cedar chips, in hopes of minimizing hand plucking crab grass later on. Spring races away in unfettered growth, but leaves behind a fertile path to follow.

The Most Telling Cancer Marker for MM is the M-Protein Level.

The Most Telling Cancer Marker for MM is the M-Protein Level.

As to that pesky cancer: it has an uncanny similarity to spring with its desire to grow, grow, grow. The drugs act like weed killers. The cancer retreats. Along with it, though, my quality of life declines.

Winter found me reeling from recurring infections and the harsh side effects. I couldn’t tolerate the drug I’d switched to last July. It worked, but I paid a price. I insisted on down-dosing in March. At first, the lower dose seemed to alleviate the fatigue and weakness. Halfway through the month, though, the doldrums re-appeared. I felt shriveled by the meds. Viruses poured through the sieve of my weak immune system. These, along with anemia and increased neuropathy in my feet and hands shrunk my world. Each week, I was either a zombie or a steroid junkie: dull as a stump or perky with unfocused ADHD.

So, recently, I chose to stop taking all meds. I’d had enough. I needed to come up for air. After six plus years on the teeter-totter of various regimens, I’d forgotten what it felt like to be me.

White Paper Birch Shedding its Skin

White Paper Birch Shedding its Skin

Soon, I’ll inform the new oncologist, Dr. B. The timing is excellent as he began work at Providence, Hood River in March. We will start from scratch to work on another way forward. 

Several options exist for MM patients in my situation. They come with unique side effect profiles and a paragraph or two of small print dangers. Thus far, until now, I have breezed through the treatments, tolerating each change. I am hopeful a more balanced plan, suitable to me, can be found.

More numbers in The Drill.

 

Tagged: cancer, chemotherapy, dexamethasone, gardening, Hood River, Hood River Valley, multiple myeloma, nature, peripheral neuropathy, pomalidomide, Providence Hood River Memorial Hospital, relapse, remission, steroids, thalidomide, writing

Menopausal Moments

Ok so this one is a bit personal…..

After my transplant I wrote about how I was possibly going through an early menopause. The hormone levels suggested it, the hot flushes suggested it, basically everything was suggesting that I was having to deal with the symptoms of the menopause at just 36 years old. That is what drugs and transplants do to you. Unfortunately, because I had the coil and wasn’t having monthly periods, the hospital was unable to confirm that this is what has happened. I was torn as to whether this mattered or not but in the end, I decided that it does matter.

I think I have mentioned that with the trial I am on, I receive Revlimid each month. Revlimid is a derivative of thalidomide and so the pharma company has to be remarkably careful to ensure that people don’t get pregnant whilst taking it. When I go for my monthly appointments, I have to wait each time for the pregnancy test to come back negative because I am of childbearing age. That doesn’t sound too bad apart from pregnancy tests aren’t like a blue line from a urine sample…they are done via bloods and this takes about 2 hours to come back which extends my day which is long enough anyway. So if I can prove that I have gone through the menopause, eventually they will stop me having to wait for that test and I will be able to get home far quicker. It still isn’t totally straightforward as there is a chance that they will make me wait for 2 years from the coil coming out to prove I still haven’t had a period (!*!*!*!) . However, at least if I can start the process now it will help eventually.

On this basis, I had the coil removed 6 weeks ago….that all seems really straightforward….apart from now I am having major mood swings that I haven’t had for years….and I seem to have developed the appetite of a heffalump! I am eating for England and piling the pounds on, losing the plot about things that really aren’t that important, and finding myself cross about everything. Arrgghh….why isn’t it simple? What is worse is that when I read up on it online, most people say that they have the opposite….weight loss and much happier without the coil…I would love that!

I need to rethink my strategy on the whole thing I think, but I’m not sure how. My plan is to see what the hospital say next month..they will do the hormone tests for me again to confirm whether they suggest I am peri or post menopausal and then they’ll have to liaise with Celgene who produce Revlimid and pay for the trial I am on. Hopefully they can get some agreement that I have gone through it, and perhaps then I can just have the coil again if the mood swings don’t go away! Otherwise Nick might just have to get a white coat for me….poor bloke!

In the meantime, I think it needs to be a diet of water and lettuce for the next month :-(

New Recipe To Treat Multiple Myeloma? Scientists Combine Turmeric Spice With Thalidomide

Virginia Commonwealth University (VCU) scientists recently cooked up something entirely different. In an effort to create a new and effective cancer treatment, they combined features of thalidomide, a familiar pharmaceutical anti-nausea medication, with those of turmeric, a common kitchen spice. What did they find? The hybrid molecules they created from the two wildly different ingredients proved effective in killing multiple myeloma, a cancer of the plasma cells, the white blood cells that produce antibodies.

“Overall, the combination of the spice and the drug was significantly more potent than either individually, suggesting that this hybrid strategy in drug design could lead to novel compounds with improved biological activities,” Steven Grant, M.D., research member at VCU Massey Cancer Center, stated in a press release.

JUMP

VDT/VTD Complete

Last night, shortly after 23:00hrs, I made my way to my Drug’s Drawer, which it’s quite a distance from my bed, removed the packet of thalidomide and felt relieved, that for the foreseeable future, I was taking my last dose of thalidomide. Once I swallowed the two plastic coated tablets, that was it, VTD/VDT was over. I was done.

Considering that I did not know I was going to be on VTD/VDT, nor did I want to, I can say that the last four months, 112 days, has gone reasonably quickly. In that time, I failed to establish the correct name of the treatment, but I do know that I took 224 tablets of thalidomide, 480 Dexamethasone tablets, have 16 more Velcade injections and thus have 112 nightly injections of Fragmin, equating to four full sharps boxes, which needed to be disposed of. All of it was done without a break. My last Velcade injection was last Friday, prior to the long walk to my drugs drawer, I gave myself my last injection of Fragmin, and my last dose of Dexamethasone, thankfully was a good few Mondays ago. The times, they are a changing.

Clearly, it is probably not the last time I will ever take these drugs. At the start of January, I said I had had my last ever Velcade; this was, quite quickly, not the case. I have learnt by now, in this merry game of myeloma treatment, to never say never. I may have given myself my last injection of Fragmin, but if my transplant does go ahead, I imagine that I will be given something similar to Fragmin because I am not going to be moving much, and as the person trained in ladies’ bits and pieces said, my weight makes me more vulnerable. Unfortunately, steroids form a back bone to myeloma treatment according to the Medically Trained Person I asked on Wednesday, so at some point, they will also return to my life. In spite of that reality check, that in all likelihood, last night was not the last time I would take any of the drugs, I still allowed myself a wry smile and an inner flutter of excitement that I had completed this round of treatment. The sight of that empty thalidomide box, my oh my, did it give me goosebumps.

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It is done. One more chapter down.

The journey I am on… Bloody hell.

Mamma Jones said that I should celebrate last night, but unfortunately, after a relatively busy two days prior, I was incapable of celebrating yesterday. I did not leave the flat all day. To be perfectly honest, I do not recall walking past my bedroom towards the front door. I essentially existed within three rooms. This fact, did put a dampener on any celebrations because my nemesis, Mr Frustration reared his ugly head. Though, that does bring me on to the second reason I am pleased this treatment is over. That side effect, fatigue. The fact I have taken my last dose of thalidomide, means that at some point in my near future, the level of fatigue I have been experiencing will fade. It will not be today, but they will and with just 11 days before I go in to hospital (possibly), that is most welcome. It is beyond welcome in fact. I do not want spend any of the days I have left, this side of my transplant, not leaving my flat. No way, Jose.

So, with great pleasure and relief, I can say, VDT/VTD, complete.

EJB x

The Moody Cow (Proper)

I have not enjoyed this last week. In fact on the scale of all things enjoyable, the majority of my week has been in the minus. If I had any doubt that my fatigue was going to get worse, there is no doubt now. Fatigue has become my ruler, and it has led to me not doing what I wish, instead, I have had to cancel my plans and thus waste time, imitating a lazy fat slob, who does nothing with her day but lie on her bum getting value for money from her monthly Netflix fee. To say that this makes me sad, would be an understatement. Today, for example, when I realised that I would not be able to go out for lunch, I produced a big wet patch on the lefthand side of my bed with my tears. My week has been full of similar disappointments. I have been cancelling plans left, right and centre, because I know that my body is just not going to get me to where I want to go.

Contrary to population opinion, I do not put on a brave face for every minute of every day. People may think that, for that is what I allow them to see, but all of the things that made My Myeloma shit ten months ago, still exist and occasionally I give in to them. Occasionally, I become a victim of self pity. I allow myself to wallow in my situation and that is what has happened to me this week. All my rational thought has been buried deep under my bed, so the only thing I have been left with is dirty, rotten, stinking thoughts, which turn me, Miss Sunshine-And-Flowers into what is commonly known as a Moody Cow. For the last five days, I believe it would be a fair assessment to say I have been the moodiest of Moody Cows. It is not pleasant.

I am frustrated. All so very frustrated.

I am no stranger to fatigue; it has been my friend this last 317 at least. What makes my current levels feel so different is time. Lack there of. There is a ticking clock constantly in my head, and my deadline is looming. If I stand back, and peer into my life with my friend Common Sense, I would realise that it does not matter what I do with the next three weeks, for there will be time to be the life and soul of my party post transplant. The trouble is, I cannot do that. I have always managed my fatigue by giving in to it one day, because I know I can make up for it the next, or in the following week. The problem I have now, is that for the foreseeable future, I do not have a next week. Not having a next week, makes the days I spend in/on bed, and I have spent much of my last week in a horizontal position, seem like an eternity. Not only is it an eternity, it feels like a wasted eternity. There are so many other things I would prefer to be doing and need to do, but alas, my body is saying ‘no’.

In planet eternity, by default, I fall into a form of isolation. Without energy, I tend to isolate myself because I do not have the energy for conversation nor, leave the compound that is my flat. In my irrational world, this breeds thoughts of loneliness. When I feel lonely, more breeding takes place and out pops anger, paranoia and jealously. I am lonely because my exhaustion dictates that I do not have the energy to see people. All the while though, I have a feeling in the pit of my stomach telling me that I should be seeing people, that I should be doing something productive and thus, all I feel is guilt. Guilty that I am not achieving what I can achieve and guilty because I feel like I am letting people down. It’s a vicious circle, because then, I get angry. I am angry because I cannot do what I had planned and I am jealous because others can do what they had planned. Furthermore, because people can do these things, my loneliness translates this as their apathy towards me.

It’s a difficult situation and there is no winning solution. On the one hand, I am too tired to speak and plan, but on the other hand, I want my phone to be constantly buzzing so I know that even if I am stuck in this prison, I continue to receive my correspondence. This week, I have let myself feel like I am in solitary. I am in a Segregation Unit of my own making. I let the thoughts creep in of people not understanding, not caring, not grasping my currently levels of anxiety and fatigue and I hit back with the full force of my passive aggression. I hate it, but whilst I feel like I am being held hostage by my medication in this three week egg timer, I am going to act out (or in).

I know I am being ridiculous. I do not need people to tell me that. Rarely, when I have these thoughts do they stick around long enough for me to have to vocalise them. I throw them away. The egg timer is filling up fast and because of that, the negativity is sticking around. Being mature and stuff, instead of handling my negatively in a constructive manner, I act like a child. This embarrasses me. A twin did not need to receive my stream of consciousness earlier in the week, however she did. It clearly demonstrates that I am currently a Moody Cow. It is not big and it is not clever, but it is the reality of My Myeloma. It shames me, but like I said, at times, these outbursts happen. So, without further ceremony, I give you exhibits a and b:

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Needy

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Pathetic

I know this will get better, it always does, but it is just tough. Tougher than over cooked beef. I cannot emphasise that enough. My paranoia tells me that people do not really understand it. A friend asked me this week if I used my tiredness as an excuse to not see people, not to answer my phone, and my response to that was simple. I wish it was an excuse. It is the reason why; an excuse implies that I have some control over it. I do not. My current level of fatigue is such that my bed is my default position and anything outside of it, exhausts me thinking about it, let alone doing it. I would not choose to sit on my bum for this level of time. I would not choose to have a day of activity bookended by a day and a half of rest.

This is my life, and the sooner I accept that willpower is not going to win out before my transplant, the better.

Just five more days of thalidomide. Five more days.

EJB x

P.S. For those of you who get my blog emailed to you, I apologise for the earlier publication. If you have not guessed, that was an error, and I ask you kindly, to delete it.

Side Effects

I’m alive. I’m alive. I’m alive.

Hello there. I would like to say that the reason I have not written a blog for so long is because I am so well that there is simply no need for me to off load my thoughts into the ether to prevent me from having a psychological breakdown, but alas, that would be a lie. And I am all about the truth. The truth is simple. I have been too tired. Tiredness sounds like a weak excuse, but it is not. I have been experiencing a tiredness that is so overpowering, I can spend a good two hours staring into space before I have realised that this is not a good use of my time and then when I do realise, there is not a damn thing I can do about it.

To be absolutely clear, this tiredness is quite different to a steroid crash. I do not feel ill when I am tired, which is a bonus. Unfortunately, whilst I do not feel sick, the tiredness just creeps in and completely takes over every other part of my being, so that the only thing I am capable of doing is lying down by myself with nothing but blankness from my brain for company. My TV may be on, but I am not watching it. I may even be able to produce some words to Housemate, like, “night”, but essentially, I feel like my brain has shut down. Blankness is the best way to describe it. If you could see me, and I could gesture to show what it is like, I would produce a confused look on my face, with my mouth open and make a constant dull moan. Let us add a metaphorical ringing in my ears, for luck. I see it as a form of stupor. At times, I worry that I am catatonic. The tiredness by the way, to ensure that we are all on the same page, is not about sleeping or my need for more sleep. I find that sleep and tiredness do not necessarily go together like a horse and carriage. Is this enough? Is the incapability explained?

As my last treatment cycle drew to a close, which by the way, was last week, it became increasingly clear to me that the tiredness was getting worse and thus my ability to do normal things was reducing. I found myself longing for my steroid crash (a ridiculous notion), because it would allow me to spend time in bed. I do not think others would judge me for spending more time in bed, but I would judge myself. I have said previously and it is my desire, that I want to live as normal a life as possible. During my cycles, after the crash, I try to do this, I try to be normal. I make plans, I go to work, I see people or at least I try to see people and at the start of VDT/VTD this was fine. I could achieve everything I wanted to achieve. Now? I cannot achieve or do everything I want to achieve with my time. By the time I get into my bed, which is key blog writing time, everything has been spent. I am done and the ringing commences. My body is in the middle of a war with my brain and the body is winning. I am essentially stuck in a stinking, dirty trench.

I believe an example would help hammer home my point. Two weeks ago, I had a day where I had three things planned. Treatment, a trip to Tunbidge Wells and then a show in the evening; I was very much looking forward to the latter. By the time I had completed the first two, my body was so exhausted and I felt so incapable of doing anything, I cried. I cried on my bed like a big old baby because I could not see how it would be humanly possible for me to get my body out of my flat, on a bus to the Southbank and back. The thought of it made me panic. Panic because I did not know whether I could last another four hours, and if I couldn’t, predicting when my body was going to breakdown. Was it going to breakdown at the theatre, were my friends going to see? Were they going to realise that there are times when I cannot make conversation because my brain shuts down or are they just going to think I am a rude self indulgent bitch incapable of holding a conversation? Which option is better? Breaking down at the theatre was my preferred option to doing in on the bus, because at least then, I could hop in a taxi home. But what if it happened on the bus? That 30 minute journey would be excruciating and then, would I even have the energy to walk home when I reached my stop? Then I panicked because I did not want to fail. I wanted to go out and defeat was not an option, well, it was, but I believe if I had allowed my brain to lose, I would have spiralled into a pit of depression. In the end, I went, I ate some food and that gave me some energy for four hours, but it was a struggle. I subsequently spent much of the next day in bed. Well, until the evening when I went on a hen do.

That was the day I realised that the tiredness was not run of the mill and I was officially drowning in it.

The wicked truth is that I have been taking thalidomide every day for the last 91 days without a break, and it is taking it’s toll of my body. The Medically Trained People told me to expect my side effects to worsen as I got deeper into my treatment, and my, were they correct. The main side effect for me, is not the neuropathy, it’s the fatigue. I have three weeks left of this treatment and I know that I am not going to be capable of having multiple plans in a day. At the moment, if I do have multiple plans, I worry about when I can squeeze in rest and if I cannot, whether I am going to be able to do it. Everything in Myelomaville is a balancing act, and unfortunately for me, I am just going to have to give more weight to my bed. Perhaps I need to conduct my life solely from my flat again, because I am finding that even a solitary plan can be exhausting. Knowing that I have to walk from a to b, or get somewhere, or speak to people, makes me tired before I have even done anything. Again, sadly, I find, this means that I see less people because I cannot make the effort to be sociable. It can be lonely. It is also frustrating.

I had planned to write this blog eight days ago, but My Myeloma had other plans. To be more specific, my side effects had other plans. I am just coming out from my monthly steroid crash, which last week proved to be the worst yet. I can say, hands down, that I have felt the worst I have felt since the autumn. Maybe since I was in hospital. The side effects will get worse as you go through your treatment. It’s been a delight. I do not want to dwell on it, but in short, I had to stay at Mamma Jones’ house because I was incapable of looking after myself. I even tried to postpone my treatment, but I had no luck there. As many people know, I am glass half full, so I just saw it as training for my transplant. I definitely did not cry a lot.

Here is an aside for you. I realised that a sign that things were improving was when I put a bra on. The support meant that I was planning to not spend the entire day horizontally. Also, wearing something that did not have an elastic acted waist. Needless to say, at its worst, I looked H.O.T. Hot.

So, there it is. The reason I have not been blogging or maintaining as much contact as I would like. Tiredness. It really is not fair. It sucks all the funny out of my mind and I am not used to that. I need to laugh.

As with everything, I am just going to plough on through and hope that I can get to the end of this cycle in one piece, without plunging into a cesspit of depression. In order to ensure that the latter does not happen, I will keep blogging. Self preservation and all that. Plus, some really exciting shit is about to happen.

EJB x

P.S. I thank you for your concern. It warmed my womb.

Stress Management

In the last few weeks, I have not thought that much about the fact that I have cancer. When I initially thought of that statement, I was going to say ‘recently’, until I recalled that my last crash was only three weeks ago and I know that back then, all those hours ago, I thought about it a lot. That’s the thing about My Myeloma; I’m only as good as my current good weeks. The bad gets forgotten, and it will stay that way until I start chugging down those ‘roids again on Friday, actually, when I come off them on Tuesday.* So, to rephrase; today, I have not thought that much about the fact that I have cancer. It may even extend to last week too, if we can exclude a few live episodes of the roadshow here and there (I even did one on the phone). Ah, the beauty of telecommunications.

Fatigue *may* have been stalking me a bit this week (just ask my pillows), but apart from that, and whilst we are on the subject, some bone pain, I feel a-okay.

Today, for reasons I am not going to share because I am sure you would find it mind numbingly boring and EJ Bones is about cancer. It’d be called EJ Jones otherwise, and then I really would get into trouble telling people about all the aspects of my life and The Network. I’ve watched Julia and Julia. I know about the pitfalls of blogging. Anyway, I am digressing… Today, I worried about something that wasn’t cancer. It actually preoccupied my thoughts. I know that that has happened previously in the last eight months, but I cannot remember when exactly (like I said, only as good as my current good week). Having to engage my brain in something wholly, not wholly, but you know, a lot, with something that for today and perhaps tomorrow and even the next day depending on how tomorrow goes, that is not my illness, banishing It to the sidelines, no matter how stupid I may look, or how flustered I get working things out during this break, is kind of nice.

I nearly text somebody earlier, I have the draft, it went something like this:

Today would have been a bad day if I did not know what Myeloma was and I didn’t have it. As it happens, apart from some testy moments which made me sweat (for once not a flush), and tiredness, I think I enjoyed myself. Is it strange to think that? See you tomorrow. You’ll know it’s me, I’ll have bags under my eyes.

I am always being told that I need to take things easy and I do. My focus, my main focus is to get better (whatever He looks like). Today, for example, whilst my mind has been otherwise engaged, I still had to make concessions. I got into bed at 21:00hrs, shortly after taking my nighttime drugs, so that I can get up in the morning. That said, I have to get the balance right between getting myself better and living. The two are not mutual exclusive. I feel better when I am doing the latter. I’ve been going through this for long enough to nearly always know when to call something quits. So, people, do not panic. I suppose, one could argue that it is wrong for one thing to occupy my thoughts at anytime, but, I’m learning slowly and every normal person gets a good four hours on me a day, so they can fill their minds with more things. And, really, don’t rain on my parade.

I know I am not in a long term, sustainable position, but it is the best I can do for now. Damn. It is not sustainable is it? Not beyond my treatment anyway… Well, I do need to see people and tidy my wardrobe and read a book and bake a cake and go to the cinema and some other stuff. So yes, it is not fair nor sustainable. But it is my now.

I suppose what I am trying to say is that today, I feel like I actually lived with cancer. Good and bad. Omnipresent as always, but not everything.

It didn’t make me sad today. Not once.

EJB x

* Note to self and steroids, must not be ill next Wednesday night. I have a date with some Mormons. Actually, do Mormons feature in The Book of Mormon? Is it appropriate to keep saying Mormons? Political correction. Note to self, must not be ill next Wednesday night. I have a date with some contemporary musical theatre.

Promising New Agents for Multiple Myeloma

Drug development for this type of bone marrow cancer has been gaining momentum, with two new proteasome inhibitor approvals in the last year alone and a number of new treatments in late-stage pipeline

Multiple myeloma (also known as myeloma or plasma cell myeloma) is a type of bone marrow cancer. Plasma cells found in the bone marrow divide uncontrollably and form tumours that can destroy bones (leading to bone pain) and damage the kidneys. In addition, there is an increased risk of infection as the cancerous plasma cells overcrowd healthy plasma cells preventing the normal production of blood cells, and therefore antibodies, required for immunity.

Multiple myeloma is a disease of the elderly, with the median age at diagnosis of 69 years, and it is more common in men than women. While it is a relatively rare cancer, it is one of the more common haematological malignancies and the economic costs associated with multiple myeloma are among the highest.

Treatment is complex and therapy choices depend on patient age, severity of symptoms and whether or not he will undergo stem cell transplantation. Treatment modalities include chemotherapy and immunosuppression, transplantation, radiation therapy, and adjunct therapies (eg bisphosphonates for bone complications or surgery to treat or prevent bone fractures).

While significant developments have been made in the treatment of multiple myeloma during the past 10 years, the disease remains incurable. But with the approval within the past year of two new drugs (pomalidomide and carfilzomib) and several novel agents at phase III development, it appears that drug development for multiple myeloma continues to gain momentum

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My Left Hand

Last week I sat in my appointment with the Medically Trained People and when I was asked the question “how is the neuropathy?”, I responded with “it’s nothing, nothing like before, in fact, I do not need to discuss it with you, so it is not an issue right now“.

Now, I do not mean to speak ill of the people I love, but I am a fool. A big old plonker. I tempted fate and now fate is holding my left arm hostage.

For those of you wondering what the heck ‘neuropathy’ is and what it means for me, then wonder no more… http://ejbones.wordpress.com/2012/11/19/cillit-bang/ I was preoccupied with this particular side effect for quite a while and somehow, I get the feeling, that I will begin to dwell on it once again. Do you know how I know this? It’s because I have a left arm.

For the last week, I have been constantly aware of the fact that I have a left arm. Intermittently, I am aware that I have extremities on the left hand side of my body, but it is the arm and hand bearing the brunt of the Velcade madness. If one is lucky, they have a complete set of limbs, but I bet during the course of a normal day, you do not think about your limbs. They are just there and they do their job. Velcade makes me know that I have limbs. In everything I do and everywhere I go, I am accompanied by them and a growing sense that I want to rip them off. Obviously, I will not rip them off; My Myeloma is enough to contend with at the moment thank you.

One Medically Trained Person told me that the side effects from the Velcade would be eased by the Thalidomide. This pleased me. However, since then, two Medically Trained People have told me that the Thalidomide enhances the side effects and thus it is super duper important that I report any changes to them. So… Helpful. They all agreed that the symptoms will get progressively worse the more injections I have, so I have concluded that… Hang on, my left arm just wanted to say “hello”… where was I? Yes, I have concluded that I will monitor the side effects like I did on PADIMAC. My dose was reduced after three cycles on PADIMAC, I wonder whether I will be able to make it to the end of my second cycle before that happens now. Worst case scenario is that I have to start a new treatment, if the neuropathy becomes unbearable. We, by we, I mean my arm and me, do not want that to happen.

I know my side effects are not that bad when compared to what other people experience. I can still do up my buttons and I do not have constant tingling in my fingers and toes. What I have is, dead arm. If it is not dead, my arm is morbidly obese weighing in at 100lbs and it is a chore carting that imaginary weight around with me everyday. My arm is also fond of the dull ache, correct, constant dull ache. I have a left arm. When I am sitting still or lying down all I am aware of is my arm. Arm, arm, arm, I have an arm, it is on the left hand side of my body, arm, arm, arm. Whilst I may not have constant pins and needles, it is very easy for me to get them. If I hold my phone the wrong way in bed, then that’s it. Needles and pins, pins and needles. I have an arm and it wants to wake me up.

Time will tell… I have managed it before and I will manage it again. In the meantime, my arm and me wish you well.

EJB x

Just A Quick Note

I’m about half way through series three, about eight weeks on chemo.  It is beginning to wear; I’ve left work early a couple times, just very tired.  I should be modifying performance curves for segments of pavement, but it’s becoming difficult to concentrate.  The items on my short list of symptoms so far have politely taken turns, one at a time temporarily taking position at the top of the list.  The doctors say I look good and my blood looks good, so we continue on.

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More Waiting