Tuesday, July 24, 2012

Day 38 just the news, now with an update

Long day and I am very tired. I will write more tomorrow, but wanted to let you know that my labs were pretty good. My hgb is 10.9 (which is a little low still, but not much), my platelets are 682 (which is still too high, but more normal than last draw--yeah!) and my white count and types of white cells are still normal, normal, normal.

The bone marrow went really well and only hurt a bit. There was actually nothing in it that would qualify for the label "pain" so that made for a very good day.

I stopped by my office and said hi, saw a couple of patients, lots of friends, got lots of hugs and happy greetings.

Emily and I did the crossword puzzle which was fun and I very much appreciated her company on my journeys today.

More tomorrow, for now off to a well deserved and very comfy bed for me. Don't stay up too late, friends!

update #1
OK, it's morning and now I am energetic enough to write. I've done my sudoku, had my coffee and the dog's state of near starvation has been slaked for the moment so now I can think properly.

I've never really described a bone marrow biopsy, have I? I've described it to a few people in person, but not here. I am sure there are other, better descriptions out there on the web, but here is what it has been like for me. Clearly, I am not an expert in them, having had only three, but three is getting to be enough to be more than a novice. An important thing to know before we start that not everyone knows about me is that I have an abuse history. It's not a huge history and I have spent a lot of time in therapy and done a lot of work, but it's there. Why it's relevant here is that a bone marrow biopsy is done behind me so I can't see what's coming and there are parts that hurt a lot and even some parts that cross over into pain. I always warn people who are about to work on me that I have this history, that I don't have PTSD, but that they should treat me as though I do and that I want them to talk to me a lot and tell me what they are doing; that will help me a lot.

The location of a bone marrow biopsy is the iliac crest. To find it on yourself roughly, put your hand on your hip with your fingers pointing towards your spine in the back. About under the pads of your fingers is where we're putting the needle. I've never seen any of these implements so I don't know what they look like at all, but I sure know what they look like in my imagination.

First we assume the position; some docs have one lie on one's side, Dr. Hill had me lie on my stomach. Either way is equivalent in my book, but not everyone can lie on their stomach, of course. Then lots of chlorhexidine, some drapes, small talk, marking with a pen (people either use ink or pressure and just dent the skin--you can imagine how hard one must push to dent the skin and make it last long enough to get the next step going; it's not terrible, but alarming if one is not expecting it--one doc did not warn me about this and was quite surprised when I jumped as the pen pushed into my butt--sorry; I can't see what you are doing!). Sterile gloves on and it's time for the lidocaine. Just like at the dentist, the lidocaine doesn't really hurt, but it is sure nice to get a warning. They describe that they put a wheal in at the surface, wait and then go deeper and then deeper. Unlike at the dentist, where I think the nerves are all in well known place, this seems less predictable. Sometimes I feel weird tingling or even electric sensations in other places in my pelvis and once even in the hip joint. It passes quickly.

The next step is when they take some kind of cutting needle and drill it into the bone. In my imagination, it looks like an old fashioned cork screw and they just turn it slowly in. The bone is completely numb so I cannot feel it going in, or feel the bone it's going into vibrating, but I can feel the bone vibrating against the adjacent bones. The first time, I felt it in my knee (the hip bone's connected to the thigh bone, the thigh bone's connected to the knee bone--don't know why I didn't feel it at all in my hip). You know how if you are on a very bumpy gravel road and you get shaken by the trip, how that feels? Well, imagine that feeling in one isolated joint that no one is even touching. It's weird. This last time, I felt it in my spine. It doesn't hurt, it is actually sort of funny.

Then, we make contact with the marrow space. Two of the three times I felt a little pop! right at the moment the cork screw pushed through the cortex of the bone. It didn't hurt, but again felt weird. Of course, in the normal course of events, no one is ever aware of their bone marrow or their marrow space so these sensations are things that my brain has never had to process before.

The next part is the painful part. Everything above can be controlled with lidocaine or is caused by the lidocaine. Not so much the next part. There seem to be two steps to this: a "core biopsy" or something similar which is when they use the hollow needle to take out a piece of bone marrow all intercalated with bone. I imagine it all cozy, doing its thing, only the marrow at the very edge is aware that anything out of the ordinary is happening, then blammo! into the fixative for you. It is roughly one centimeter long and about the thickness of a piece of yarn you would knit a baby sweater with. They send it to the lab where they "demineralize" (dissolve the bone away from) it and then they look at it under a microscope and make smart pronouncements. I think this step usually is quite painful although I'm not 100% sure because I can't see what they are doing when.

The other step is for 100% sure painful (unless it's not) and involves "aspirating" the bone marrow. I imagine a long thin eyedropper sucking up marrow juice and in my mind the vaccuum it creates is what hurts so much. Have you ever had sciatica? Well, it feels kind of like that, except for me, I've always felt like I could feel the sciatica taking a path that made sense (butt to thigh to knee, worse if I bend this way, etc.). Aspiration feels like a lightening bolt with one end fixed to the site has been let loose in my body and the other end swings wildly around: hip to back to thigh to pelvis to hip to ... It is the kind of pain that requires your attention. For me, this is the part I dread. The lidocaine part, the drilling part, the bruised feeling afterwards, it's all fine. It's just the 5, 10, maybe even 15 seconds of pain that make me try to avoid the procedure. This pain is so far off the pain scale of anything else I can remember experiencing that there is no comparing it. It is totally fascinating, however, because if I can wrest even the tiniest drop of attention from it (which is the whole point of breathing exercises for me), it does decrease. The amount of energy required to pull my attention away from it is astonishing, however, and I lack the initiative to do it for myself--my attention is like a deer in the headlights staring at the pain--but someone else can tell me to do it and I can pull 1 or maybe 5% of my attention away and it helps a lot.

Back to the bone marrow situation. I'm still lying on my belly with an eyedropper sticking out of my backside. Here is the amazing part! This last biopsy, there was no pain. No pain. Dr. Hill said, "ok, there's the first aspirate; I think I'll need about 10 cc's for all the send out tests we're doing." I thought to myself, "he must have done a different kind of aspirate; here comes the painful part," and there was no pain. None. Not a bit. Next, he said, "Ok, we're done" and I was shocked. What? When's the terrible part coming? Here I made all this adrenalin and there's nothing to use it for? Aren't you even going to break my kneecap?

Evidently not. All bandaged up. Specimen to lab, last case of the day. Here roll over and lie on this pressure dressing for twenty minutes. I'll get you some cranberry juice and then you can go home.

I tried to explain to Dr Hill that the usual pain was not there and he kept apologizing for the lidocaine. The assistant said it didn't hurt because he aspirated slowly. Really?!? You're telling me that if everyone who does bone marrow biopsies aspirated more slowly, the worst part of the procedure would just not exist? When I think about how many times patients have told me about how miserable a procedure it is, plus my own two experiences of it being painful, I am not even sure how I should feel. I'm almost looking forward to my next one so that I can ask the biopsier to do the experiment.

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