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.

20121121-224946.jpg

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

Think 19.

EJB x

πŸŽ„πŸ‘»πŸ˜­It will only be one Christmas, it’ll only be one Chistmas, it’ll only be one Christmas.πŸŽ„πŸ‘»πŸ˜­

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2 thoughts on “A Crossroads?

  1. hello emma,

    i am so sorry for all the waiting you have to endure. i know there is nothing i can say to make it any easier – being in limbo totally sucks. but please know that i think your blog is amazing; you are a gifted wordsmith, and i know you are helping others with your candor as you chronicle this beastly journey of MM. please know that even though i don’t comment as often as i should, i do follow your blog, and i think of you every day.

    • ejbones says:

      Thanks Karen. At least I had some good news yesterday. I have to take the little victories whenever and wherever I can! It’ll all happen all over again at the end of the next cycle, but I’ll be able to prepare for it and it will not mean being hospitalised over Christmas.

      That said, they’ll be a lot of waiting around over the next fortnight as I have my treatment. It’ll soon be time to take up he knitting.

      Thanks again for reading the blog. It is still the best catharsis for me.

      Emma

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