Volume II: Déjà Vu

As much as it may have appeared to you that my last blog was intentionally brief and not proof read, thus expressing my raw emotion and anger at my current situation, I can confirm that that was not my plan. As much as I like dramatic emphasis, I also like a beginning, a middle and an end, more than that however, I enjoy something that resembles a point. Let this be a lesson to all you bloggers, do not put your mobile phone into the pocket of your jeans, when you cannot walk straight, mid blog post. Intentional or not, it proved to be one of my most popular blog posts to date. Alas, maybe all my blog posts should be as punchy; I just have too many words in my head.

The initial intention when I started to write ‘Volume II’, was to provide an informative overview of the new treatment plan with a rousing, motivational ending full of cliches, about how I was going to fight and not flight. The ending of course, would have you applauding me for my never ending resolve, whilst saying to anybody you encounter that I am an incredibly brave, independent, woman worthy of an OBE. I suppose I have cut to the chase a bit, but at 05:00hrs in the morning, let me see what I can do.

And so, it starts all over again.

Yesterday [we are now talking about last Thursday], the plan, if you can call it a plan for me, was laid out before my eyes. It is with great pride that I was able to make it through the appointment, where it was confirmed to me that my life would once again be fatigue fuelled, without crying. I may have swallowed more than usual, but I did not cry. I saved the crying for Mamma Jones over our laksa soups, by myself on the bus and pretty much any other place I went last week.

So, after 60+ Velcade injections over my 22 month myeloma lifespan, we are no more. After two relapses and a transplant, it has been decided that my stomach can be spared of further marking and my limbs can hopefully, be spared of the pin and the needle. It’s going to be all about the tablets. Unlike my recent Velcade injections, there is nothing about the new treatment that can be considered maintenance; it is a big fat, steroid supported course of treatment.

For those of you in the myeloma-know, my treatment will not be that surprising. It consists of a four week cycle, with three weeks on and one week off of Revlimid and a pulse of steroids. The first cycle has not one, but two pulses of steroids. I will remind you all, because it is a fact burnt onto my worst nightmares, I do not get on well with the ‘roids. At it’s most pleasurable, dexamethasone gave me a beard. I do not like having a beard. The two drugs are supported by a whole host of other drugs, but I will share those with you when I collect them tomorrow. As a preview, I think I am returning to the territory of 30+ pills a day. Chalky.

I start the treatment on Wednesday. Tomorrow, I get to have my seventh bone marrow biopsy. I am looking forward to the cake I get to have after that deed is done. Although I know the start date, I have no idea how long I will be on the treatment for. I know that I have been given permission by the Medically Trained People to go on my booked holiday on 1 October, so one can assume that I will still be in treatment then. It’s a big black indefinite hole.

The treatment I will be on does not come with the hope of a prolonged remission. Thus, there will need to be a decision made in my months to come about me having an allograft. Two months after my autograft last year, I made that particular decision about the donor transplant and that decision was a go. All or nothing. When I made that decision, I did not know that I would have to think about playing my trump card so soon. It is a terrifying prospect.

There are going to be many a side effect coming my way, not least the return of the fuller beard. I am not kidding myself, there will be fatigue, so much frigging fatigue that looking at me will have my guests yawning. As a result of the fatigue and the chemical imbalance in my body, I imagine that I am going to have the odd moment of feeling overwhelmingly sad. I am preparing for these inevitabilities. The latter side effect will not be helped by the fact the treatment is all home based. I need daily interaction and the lack of it, was the hardest thing I found with VDT/VTD and my post transplant recovery. Without interaction, which intravenous meds afford, though nowhere near as much as living does, I fear myeloma will take over.

Having been through all this before, my sense of déjà vu tells me that I need to have sufficient home based activities to prevent the madness. That is just one part of my sanity preserving strategy. I know that I need to get better at asking people for help, even if that help is just company. Flip that coin however, and I also need to be able to say ‘no’. The above three things are far easier than me being able to eradicate the current guilt I have over my relapse. My relapse has let people down; it’s let me down. I am yet to start my treatment, but in the last three days, I have had to forgo two important events because of My Relapse. I hate that my will is not currently strong enough to fight my myeloma. I have never considered myself unreliable, unless the topic is defrosting the freezer or clearing the end cupboard, before. I hate it. In fact, hate does not even begin to cover it.

It has been a week since my world once again imploded. There have been too many emotions to list them, and too many tears to count them. I turned a corner on Thursday, but it would be naive of me to think that my negative thoughts have been banished from my week, let alone forever. It’s a journey and there are going to be highs and there are going to be several lows. I may lose all my money, I will lose my hair and I am going to fight to not lose any more of myself. It’s going to be shit. Monumentally, shit.

I know I am not ready to give up yet. My relapse puts me between a rock and a hard place, and the only option for me at this moment in time is to fight. I will fight for myself and I will fight for everybody in my support network. I cannot give up yet, I am only thirty years old. I still want to see me at forty, even now there is absolutely no chance of children. It’s an uphill battle and I am not ready to lose it yet. I cannot lose it yet.

And so, Dexamethasone and Revlimid, bring it on.

Bring it on, again.

EJB x

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One thought on “Volume II: Déjà Vu

  1. Terri J says:

    There is a plan. That’s the good news & with the new medicines available there may be future plans. My daughter is on Revilmid for maintenance after her stem cell transplant. Yes she does have fatigue but she has learned to pick & chose what she wants to do & can do. She works full time & usually can do a couple of things a week. We went on our 9 day trip & she took Revilmid the whole time so travel is not out of the question.You can’t drink alcohol on Revilmid. You can’t get pregnant on Revilmid. They remind you of this every month before delivery. She is not losing her hair. In fact it seems to make her mustache grows so she uses NAIR facial hair removal twice a week.
    A relapse is so disheartening. She hasn’t reached that place yet but I know it will be awful for all of us. Remember there are a lot of people out there pulling for you & hoping this can keep the monster at bay .

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