Tag Archives: PADIMAC

Disbelief

For the last fourteen days, I have wandered around the corridors of my flat in a state of disbelief, doubting my ears and those belonging to the head of Mamma Jones. When I was bored of that, my brain waited for the other shoe to fall, because in my world, it almost always does. The shoe drops to the ground, damp and covered in holes, and myeloma wins some more in this game we call My Life.

Let’s face it, since the 17 August 2012, my life has hardly been the warehouse party I would have liked it to be. There have been ups and there have been downs. There have been good cylinders and bad cylinders. There has been treatment and after treatment and setback after setback. I feel like my stoicism, made way to a pessimistic realism disguised with a smile and nifty wordplay.

The last 15 months have not been easy, just in case you were in any doubt. Anybody who wants to know that can know that, because I have recorded them for all the world to see, accompanied by a plethora of grammatical errors and melancholy. The fault there belongs to the drugs and not to me, I assure you. I was once as hard as nails.

The last 15 months has changed me irrevocably. Sure, much of the old me is still about, but to be dramatic, I am not what I once was and nor will I ever be. My Myeloma and me will be forever entwined; the blood sucking, life zapping, filthy bastard that it is. We’re together now and that is how it has got to be.

Two weeks ago, I heard something, four times, that defied my expectations. Unlike many people, who I wanted to greet in a dark alleyway with a pair of nunchucks when they opened their mouths or touched a keyboard prior toy transplant, I did not believe that my transplant would give me a remission. At some point, I was told that in all likelihood, this would not happen. To protect myself, that is what I had to expect. After the dogged stubbornness of my disease, the chances of my transplant failing right off the bat, were high. And still, I went in fighting, backed up by my Support Network, waiting there like a fleet of Lancaster Bombers, with teddy bears on board to protect and comfort me.

And here we now are, back to that pesky disbelief. I did not want to write it down for fear of jinxing it, thinking that I would force the gods that be, the Medically Trained People that is, to shout “CORRECTION, it’s not over, we’re giving you another round of treatment because we have to, and thus, you cannot resume your life.” I definitely did not want that to happen. I do not want it to happen.

I may have uttered the words to one or forty people close to me, but I have not believed them. At a time when I imagined I would be singing and dancing and prancing, I walked around like I was suffering from concussion. I cried. Even Mamma Jones drew a tear and that just plain freaked me out. I have made practical steps that somebody in my position might do, like plan a return to work, spend a few nights pretending I am 21 again and slept, but it did not sink in. I would not let it sink in until I received it in writing. Until I had the proof I needed to know that for however long I have, that I am in remission. There I said it. I am in remission. I don’t think I am in remission. I am. It’s not how I imagined it, nor did it come as quickly as I had wished, but it is here. I now have evidence that there is no evidence of myeloma, and that made my day yesterday.

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I am in remission. I might just say it again, because even with the proof, I still don’t quite believe it.

That damp, dirty shoe is going to fall at some point in my future, but for now I am going to exhale like I have never exhaled before and relish in this feeling that after 15 months of illness, sickness, treatment and limbo, I am free. Well, as free as I am ever going to be from this. And that fact makes me do something I had yet to experience and that is to cry rivers of joy. Joy and relief.

Those of us unfortunate enough to have myeloma know that the magic word of which I speak does not mean a reversal of fortune and a physical rewind to a pre myeloma life. Everything that poisoned my innards, has left a mark, and now the challenge is to learn to live with that. I still experience pain, I am still in recovery following the Big T and I am still required to attend the hospital and receive the fortnightly injection of Velcade. This is why we are intertwined. The story goes on, and hopefully, on and on and on.

In time, I will learn that this first all consuming 15 months were only part of my story. I have to learn to live with My Myeloma now, I have to properly enter the big wide world and discover my limitations and exceed its expectations, and I hope that I will continue to be surrounded by the people I love for the ride.

Right now, however, and I mean right now, at this instance, I can officially say that after so much, so much time, so much pain, so many needles, so many stem cells, so many drugs, that this chapter, this volume, this tomb, and whatever else I have called it, is over. It’s done. It’s closed.

The only thing left to say is, my name is Emma Jane Jones and I am in remission.

EJB x

To be continued… For sure.

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So Long, Velcade

Today, I am truly, truly thankful that on Thursday, I received my last ever dose of Velcade aka Cillit Bang.

I grateful that I have come away after 24 injections of the stuff with only minor side effects. I can still do up my buttons, yes. Buttons. I am relieved that my neuropathy is now mild, with my ability to get a dead hand or arm now only slightly easy. I can now sit still, and for eighty percent of the time, I will not get cramp or pins and needles on the lefthand side of my body. I trust that in time, this will disappear completely. I still get dizzy on occasion (2-3 times a week as the questionnaire goes), and I hope too that this will disappear.

The above is the serious stuff, though it is not the main reason I am thankful today.

Today, the reason I am pleased that I am no longer going to be injected with this bleach-like-medicine, is because I know that the inflammations and marks currently irritating my waistband will go away and they are not going to be joined by more inflammations and marks in two weeks time. This week, the Velcade must have known our time was up and felt the need to leaving a parting gift. It has decided to replicate mosquito bites on my stomach. I mean, the big mean sort of mosquito thirsty for your blood. The stretch marks don’t help. I should not have indulged quite so much at Christmas. Imagine walking in a pair of jeans with an inflamed, red, itchy and dry stretch mark on your stomach, if you can’t imagine it, find a mosquito and eat some cream… It is far from pleasant, it is irritating and it hurts. It does not hurt like a fracture, but there is quite a sting to it. See?

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In the grand scheme of things, the above is minor. I know that, but it is the one thing today that has really made me think about My Myeloma. It’s the myeloma’s fault that is on my stomach along with 21 other blobs*. Fortunately, I have just whacked a healthy lashing of Lucas’ Papaw Ointment on my stomach all the way from Down Under, which I hope will work where the nappy rash ointment has not.

Let us all hope I do not scratch it in my sleep. That would not do at all.

EJB x

* In case you are worried about continuity, 22 of my 24 injections were on my stomach. The other two were on my arm.

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What Next?

Today, I have had my final dose of Velcade. This means I have had my last dose of treatment on the PADIMAC trial. It would be unfair of me to say that PADIMAC has failed me, for I have had a partial response, however I did not want a partial response. I wanted my paraprotein to go down to 0. I wanted to be able to harvest my eggs and my healthy stem cell. I want to be going back to work now. I want to have hair. Eighteen weeks and two days ago, I thought that the above would happen. Well, most of it. After my first cycle, I was sure of it. I thought that at the start of 2013, I would be better and that by now, I would be getting ready to return to work, just potentially with slightly shorter hair. I still have hair and the hair I lost is starting to grow back. It need not have bothered for I’ll be shaving it off in a month. At the time I thought my chance of having my own babies was nonexistent, which is good because I prepared myself for the worst. As it turns out, at this moment, I can still have babies; it is unlikely that I will be able to have my own babies in two months time. Thank goodness I prepared myself for the worst.

Over the last eighteen weeks, I have had six cycles of treatment involving 66 pricks of a needle, a facial hair load of steroids, chemotherapy, received a stomach full of scars and produced two buckets full of my pee as well as seven egg cups worth. In this time, I have learnt how my body will feel within in each three week cycle. Every side effect I know and I can manage them, even the horrible ones. I know when I cannot get out of bed and I know when I can. I know when I will not be able to toilet and more often than not, I know when I can. I know when I will not want to eat nor drink and I know when I will. I know when I need to speak to the Medically Trained People and I know when I don’t. Knowing all these things means I know when something is wrong, because my experience tells me so. I do not know what my future holds.

I have a rough outline of what is to come and I have a rather horrible decision to make before that. Regardless of my decision, I know that the treatment to come is going to make me feel more ill than I have ever felt before. I face at least three months of a low immune system, and during that time, until my blood count returns to normal, every sneeze, headache or frustrating stool is going to come with a waterfall of paranoia. Any immunity I have built up over my 28 years will be lost; my body will start afresh. Hopefully.

As for my future treatment and the transplant, I am terrified. I am so scared about the side effects, the chest line, transfusions, missing my flat and death. I don’t want any of it, but I know that all of it bar the latter, is necessary. It will happen. It is happening. I want to get better. Correction, I need to get better. To curb my mawkish thoughts, I have to remember one thing. I have to remember that I got this far. I got through my diagnosis and I now understand what is happening to me. I got through my eighteen weeks of treatment and everything that entailed. I have got this far with my head held high and with my personality still intact, albeit, clinging on for dear life. I did it.

And by hook or by crook, I will get through this next stage, as scary as it seems now. I have to. Every part of my treatment is a means to an end. I have said that from the start and I will have to continue to say it regularly because it is true, and because I now suffer from short term memory loss.

For now, I am going to enjoy my four weeks off of treatment. I am going to build up a bank of positivity because I know I will need it.

A means to an end.

EJB x

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Day 1, Cycle 6

I was in such a good mood this morning.

Today, as it turned out, I had cancer. I spent seven hours and fifteen minutes at the hospital waiting for today’s treatment of Doxorubicin and Velcade and transport. It is Day 1 of my last cycle on PADIMAC. The rest of my cycle better not be like this. Please. I need a life that is not just this.

On Day 1, before I get my main drugs, I have to have a blood test, my vitals, a pregnancy test (to confirm, despite several imaginary attempts, I am not pregnant) and receive fluids and anti-sickness medication. All in, it should be done in 90 minutes. Today, everything and anything after midday was a shambles and the 90 minutes was but a dream set in a meadow in the Spring, with me wearing white and doing carthwheels.

I had counselling this morning at 11:00hrs and landed on the second floor at 11:55hrs. Fine. I was jolly, the counselling was productive and my outfit only contained some black today. Being the selfish person I am, I had already informed the hospital that I had been double booked and asked that I be checked in at 11:00hrs still because I have now experienced ten Mondays before this one, and know that they run slightly behind schedule and offered to have my bloods tested elsewhere to speed up the process. It did not speed up the process.

I understand that there are staff shortages and the nurses cannot come in if they are sick, but this is the excuse I hear every Monday and to be honest, Tuesday. I am 28 years old and want to live as much of my life as I can, but alas, today was wasted sitting on a chair with only my tired brain for company.

My day actually started at 09:00hrs, at which time I was ready to leave the flat as instructed. Once I realised that it was going to be at least a nine hour day, I spent 90 minutes crying (on and off) because I had to cancel my plans this evening, because it dawned on me that I could no longer have the time to fulfil my Christmas Baking Gift Challenge and because all of it was completely out of my control. My day was about My Myeloma and only that, and there was absolutely nothing I could do about it.

I suppose, I cannot complain too much, for my lunch was provided, and I am a very lucky to have had the corned beef sandwich on white. It was a culinary delight. Okay, I am reaching here, but I do not want to be a completely negative person. My heart is warm and I am kind. I am not usually somebody who is rude to her nurse.

As well as the above, today I learnt, in the context of cancer and the cannula what ’tissued’ means. It is not pleasant. My cannula was fitted two hours before I was attached to anything, the first being the anti-sickness drug. There were no issues with the application, it flushed well and it was almost pleasant. I gushed. Somebody then, during the two hours wait, moved, a lot it would seem because somebody managed to bend the cannula so that it was no longer in a vein. Unfortunately, this was only discover after they had tried to put the drugs in my arm, which then looked like the photographs below but worse. For a period, my arm looked like it had half a golf ball in it. It’s going to bruise and the vein is still like one of Madonna’s..

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Oh, and I managed to fracture another rib last night in my sleep. In my sleep. Score.

So that was my day. It sucked. I am exhausted and cannot write nor speak with any enthusiasm.

Tomorrow will be better.

EJB x

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Day 7

It’s Sunday night. I have made it to Sunday night. I have also managed to wash myself. Twice. I have left the flat once. In your face fatigue. Just to remind you, the above is the sum of my achievements since 16:00hrs on Thursday.

I have no idea how many hours I have slept nor the time I have spent lying in the dark, but I do not care. I am just happy that it is Sunday night and that I have made it to this point with only the one private temper tantrum. Disney helped.

The end is in sight. Until next time…

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Knight Of The Living Dead

It’s Day 5 of the Fifth PADIMAC Cycle. Look at my face. Look at it.

Do you fancy being my knight in shining armour? I’ll pay you back with really fun things in about six months if you just come to my rescue now… I’ll buy a book and ask for more radiotherapy to make it worth your while. Remember, I’ll be skinnier then too.

Sold?

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The Lesser Of Two Evils🔥

It is that time again, welcome to Cycle Five! Steroids. Yes. Chemotherapy. Yes. Velcade. Double yes.

I dread the week ahead. Correction, the next nine days. I feel slightly guilty for having these thoughts, because I willed for me to go onto a fifth round of PADIMAC. I willed for me to go into the clinic for four days for at least five hours per day, knowing that the treatment will make me feel rotten for the five days following. I know that staying on the trial is the best thing for me, but that does not take away the fact that my treatment is unpleasant. Ever the pragmatist, I am prepared for it. The clean pyjamas are out, the easy to heat meals are in, easy to watch entertainment is on my television and the activities to keep me relatively entertained at the clinic are in my bag.

Even with activities like reading about information management, I am likely to get bored. Two of my three main clinic buddies are still on a working holiday (selfish), and my other clinic buddy actually has a nine-to-five and has previously been taking time off, so boredom is well and truly is on the cards. I am not sure why the rest of my friends have to work; this world is too cruel. I have probably planned too many activities, as well as my scintillating read, I plan to do some writing (never did I think I would be the sort of person to slip that into a conversation), catch up with my chemospondence and chat utter nonsense to the Medically Trained People. I am sure they appreciate it. If only I had my energy in the evening and not the day when I am stuck in the clinic alone.

As I know what is ahead, I made sure that I thoroughly enjoyed my week off. I especially enjoyed my weekend, once I knew that I did not have to wallow in treatment anxiety and pity. I baked, I cooked, I had quality time with my AQ, people farted in front of me and I laughed. I even gave myself a break from the blog, in an attempt to not think about My Myeloma. For most the time it worked. Inevitably though, it creeps in… I enjoy myself with my friends and get into my bed thinking about how I much enjoyed myself and my brain goes “don’t forget you have cancer, your enjoyment is a sham”, or something along those lines and I am back right back down to reality. I will not need to be reminded of this fact this week, but that’s okay because my brain is not going to work properly anyway.

So, let this week commence… Give it to me PADIMAC.

Think paraprotein reduction please.

EJB x

Oh, before I forget, guess who gets to have a pregnancy test today? I just knew it was wrong for me to have all that unprotected sex with randoms last week… Oh well. You live and learn.

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Nineteen

At 11:25hrs this morning, I received a call from the hospital informing me that my paraprotein had reduced by four, below the halfway mark to 19. Nineteen.

Thank all the swear words for that.

I now get to have a Christmas at home with my family and I get to keep what is left of my hair for a little bit longer. Knowing that at some point in the new year, I will undergo a high dose of chemotherapy (aka The Diet), I have decided to indulge this Christmas. Cream can now be yogurt to me.

I could write reams and reams about how relieved and happy I am about the news I received this morning, but I have decided to get up and enjoy my day instead. I have chutney and scones to make.

Many thanks for all the messages this morning. I think my body heard what it had to do.

EJB x

In case you thought this was all over, I should probably warn you that I get to go through all of this again in three weeks time, just without the possibility of spending my Christmas in a hospital bed with T13’s Angels. That will be 2013’s challenge.

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A Crossroads?

Have I come to the end of the road called PADIMAC? I do not know. My doctors do not know. Perhaps PADIMAC has been my A road leading to a motorway. Maybe I am just at a roundabout. Going round and round and straight on a bit and the round again. The last three weeks have felt a little bit like driving through Milton Keynes. Yes, I know I have exhausted this particular metaphor. I will stop now. I promise.

Today, as expected, one of my doctors talked me through the other treatment options should my paraprotein not reduce below 20 on Friday. The blood that will tell my doctors the answer was removed from my arm at 10:30hrs this morning. Who knew that a few millilitres of red and white blood cells and a bit of plasma could influence so much? Not me, that is for sure.

I was relatively relaxed prior to my appointment. I expected to be told that I would be put on a different course of treatment similar to the one I am on now. On reflection, I may have been told this.

Earlier today, I had a slight whine about how much of my time is spent waiting. Perhaps my whinge was slightly unfair, but, that said, I now have to wait two days to see whether I will start my fifth PADIMAC cycle on Monday. I knew this much already. I need to drop four points or whatever the measurement they use is called. This is Treatment Option 1. If this is not the case, I will have to wait a little bit longer…

If my paraprotein level is above 20 on Friday, which would mean that I have dropped less than three points in my fourth cycle, I will need to have another bone marrow biopsy. Two weeks after that, once the results are in, the Medically Trained People will decide how I am going to proceed. This is called limbo.

If my bone marrow juice and bone tells the Medically Trained People that I have had a good response, I will go into hospital for an intense dose of chemotherapy followed by stem cell support. This is Treatment Option 2. Treatment Option 2 will steal my Christmas.

If I have not had a good response, there are two further treatment options. Treatment Option 3 also steals Christmas and is another high dose of chemotherapy in hospital. Treatment Option 4, is what I thought I was going to be told today, and involves a drug taken orally in my flat on a four week cycle.

This is all I know. I do not know how long Treatment Options 2-4 will take, nor do I know what they involve and their vital statistics. I have many questions; the list grows every time I talk to somebody. I must try not to over think this, all I will get is dead ends (whoops, the metaphor came back). I cannot influence this.

My doctor rather helpfully drew a diagram, the sort one would find in ‘More’ magazine, for clarity. I can confirm that it is clear.

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I am frightened. The devil you know is better than the devil you don’t. Fact.

Think 19.

EJB x

🎄👻😭It will only be one Christmas, it’ll only be one Chistmas, it’ll only be one Christmas.🎄👻😭

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Knowing The Cycle

I am wiped out. As in, actually wiped out. For the last four days, I have been into the clinic everyday, for a minimum of four and a half hours each trip, and I have received four doses of chemotherapy and two reduced doses of velcade. And thus, as my body now battles four days worth of rather strong chemicals, and I guess My Myeloma, I am absolutely pooped.

Current symptoms include the following:

• fatigue – I fell asleep on my way home in the ambulance
• lack of concentration
• nausea
• stomach cramps
• slight neuropathy in my left limbs – aka the pins and needles and more cramp
• hot flushes
• a constant taste of metal in my mouth – Tin Mouth, Tin Mouth! The un-kissable dream
• headache
• neck stiffness
• constipation

Don’t feel sorry for me though, oh no.

What differs from this cycle from my previous three cycles, specifically the last one when my symptoms worsened, is that I know there is an end date to this misery. I am not entirely sure whether I will be fortunate enough for this to pass by Saturday morning but if it doesn’t, I know it will pass at some point over the weekend or early next week. Hell, it may even pass tomorrow. Who knows? Must stay hydrated.

I have no control over this feeling, but I do have control in how I manage it mentally. So, what you are actually reading is a happy blog, you just need to read between the lines.

My key message to you and myself is that this will pass. Although I am pretty much bed bound right now, I know it will pass at some point. These current feelings and sensations are just another chapter in my future best seller ‘A Means To An End: Marry Me, I Am Bald, I Had Cancer, But I Think You Are Fly’.

In the long run, feeling this shit, is making me better. One day, some clever person will invent drugs that do not have side effects, but in the meantime, I am a brave enough Very Pleasant Young Lady who is just going to lie in bed by herself and ride out this rather nasty wave.

As I am not one to shy away from the hideous side of my treatment, please feel free to view this photograph of me looking tired. I am sure Housemate saw worse when he got home this evening.

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Sleep tight now.

EJBx

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