It is Wednesday, February 9, 2011 and the worst part of this experience is mostly behind me. The worst part for me was telling the ones I love that I have leukemia. It makes it more real when everyone knows. When I only knew, I could almost pretend that it wasn't true, but once it is out there in the universe all bets are off!
My day began with a bone marrow biopsy. Don't ever let anyone tell you that it is uncomfortable, but not that painful! I asked the nurses and even the doctor if they were going to give me anything to make the procedure easier. They all said no. I wasn’t happy and I was a bit baffled. Last night I told the nurse that I had a headache. It was around midnight. She called my doctor, woke him up, and he ordered 4 mg of morphine. She comes in with a syringe and I ask her what it is. Morphine! Morphine for a headache??? Come on, a bit overkill. I told her that I was thinking more along the lines of Tylenol, but she said that he didn’t order that. I told her thanks, but no thanks, I needed to have my wits about me so that I could keep an eye on them. I asked for an ice pack instead. This is why I am a bit baffled by the lack of medication for the bone marrow biopsy. I think it was my doctor’s way of punishing me for waking him up!
Now, for the biopsy itself, two doctors come walking in and tell me they are there to do the procedure. Mind you one of the doctors is of average size, the other one.....well think of the Indian in "One Flew Over the Cuckoo's Nest", I said, "So, you are doing the procedure and he is going to hold me down, right?". I ask THEM if they are going to give me anything to make this easier and they too said no, “It will only take 5 – 10 minutes with minor discomfort.” They ask Joe to leave, I protest and I lose. So now the score is doctors 2, patient 0. They raise my bed and ask me to roll over onto my right side. I ask them to tell me everything that they are going to do, BEFORE they do it. This plan starts off well and then takes a nose dive!
The first thing he does is cover the backside of my rear end with a paper like cloth with a hole in it. He states that this is going to be a simple biopsy as he can easily locate my hip bone. He swabs on antiseptic and tells me that he is going to numb the area. The numbing consists of my skin, and the muscles and tissue down TO the bone. It burns and stings but isn’t unbearably painful. Next I feel some pressure and ask him what he is doing. He replies’ “The biopsy.” Duh! Not exactly what I had in my, I ask him to be more specific and he says that he is now going to penetrate the bone. This is where the real fun begins.
I feel a ton of pressure and moderate pain. I am hanging in there and ask him how much longer. He says, “Awhile”, once again, not a good answer! I feel him starting to twist and really pound on the needle in my hip. I literally start screaming, “Ow, Ow, Ow, Ow, OW!” “How much longer?”, “Are you almost through the bone?” His reply, “For a skinny little girl like you, you sure have hard bones!” Great, right?
He continues to pound and I finally feel a pop. Of course, I think that we are through the bone and done, except for the aspiration. Wrong! He continues to twist and pound as he is surprised that this still hurts. The pain is excruciating and I am screaming. They call for another nurse, to calm me down and hold me still. I am begging for a sledge hammer to hit me in the head. I ask how much longer and he tells me that he has to do it again, in another location. I am in tears and so much pain that I do not know how I am going to make it through this experience again.
He removes the needle and starts over. This time it is even worse. I am now getting sharp pains down my leg in addition to the pain of him penetrating the bone. I am continually asking for updates and how much longer. He is very uncooperative and the nurse finally says about 3-5 more minutes. This helps tremendously as now there is an end in sight.
He finally says that we are almost done and that he is going to pull out the marrow. Now that is the oddest sensation ever. It hurts like crazy and feels as if they are pulling your insides out from your toes. The only good thing about it is that it means that you are almost finished. The needle comes out and you are left with the same feeling as a toothache, in your hip. The ache subsides after a few days. Needless to say, I have quite a few nasty words to say to the doctor and inform him that I will NEVER go through that again without being medicated or knocked out cold! The procedure lasted 35 minutes, a far cry from 5-10 minutes. I’ll take that morphine now, please!
For those of you that are not faint at heart. This girl is my hero. She did so much better than me. It also seems as though they froze her bone. I wonder why they didn't freeze mine.
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Why don't you have a general anesthesia? I have had 3 bone marrows...all of them done while under a general. I wouldn't have it any other way. Reading about your experience made me cry! All that pain and stress is so unnecessary!! It sounds as if the Drs. were inept!ReplyDelete
Thanks for your compassion! I will never let them do a bone marrow biopsy with being knocked out again! I was shocked when everyone I asked for something, nurses and doctors alike, told me no.ReplyDelete
I do have a new doctor now at UCLA.
Do you have CML?
Best to you, Michele.
I had a bone marrow biopsy done in the physicians office, it - was brutal! Like you, I will NEVER under go that procedure without some kind of anesthesia... Someone I know had one recently, and they gave her an epidural before the biopsy... Anything - is better than nothing... I honestly think Dr.'s that perform this should HAVE IT DONE themselves, and "then" decided whether or not it warrants anesthesia... I was hoping Dr's other than the one I had were more compassionate. I would like to know how to bring a little awareness about this procedure! I felt betrayed, when the chips were already down!ReplyDelete
No kidding! My subsequent Dr.'s were appalled.....I still am in disbelief that it really happened. It;s kind of like when they used to make women go through labor without any help. Barbaric!ReplyDelete
Hi! Somehow found your blog - I've been blogging my husband's adventures of fighting CML for the last 2 months. He had the same experience as you with the bone marrow tests. Took 45 minutes. He's not going in again without being knocked out either. We were at M.D. Anderson and saw at least 15 people come in and out of the procedure without a single problem. Not sure why some people have problems and others don't.ReplyDelete
When my kids go to bed I'm going to catch up on the rest of your story - I started at the beginning!
Hey! Thanks so much for stopping by and reading. I am now following your blog, too.Sounds like I was diagnosed just 2 months before Josh. Life sure is unpredictable. I shall catch up on his story tonight as well.ReplyDelete
My best to you and your family!
Hi Michele - Well that should be your last BMA.ReplyDelete
Only used for diagnosis. From here on end bloods are all that is needed to collate your BCR-ABL/BCR%. I can recall having a BMA - I could not walk without a limp for at least 5 days. Like yourself felt bruising. The difference of my procedure is that in Australia (West) we have medication support for BMA's and my Haem/specialist is a humanist and in private practice. I would state great that it took so long to get the aspiration done to get thru bone. That will stand you in good stead for many years to come. It means you have strong bones. I heard of someone recently who had spongy marrow and the specialists could not get a great bioposy. Keep exercising so that your muscle and bone strength keeps up as some people have reported a leaching in calcium. Plus exercise is great for general health and if experiencing fatique with either the CML condition or from glivec medication this will assist to alleviate the problem. Listen to your body and rest when you need to do so. BMA - take some support medication next time - life is not supposed to be that unbearable for procedures. Keep Well - love reading your blog. I have a rebirthing and now 4 years old (DX August 2007) and PCRU with a CMR (MMRx5)
Whoo Hoo, Sue! That is awesome! Four years, wow! I do have a new doctor now and he does wish to perform another BMB at the six month mark, but will knock me out. Love that!ReplyDelete
And yes, the doc doing the biopsy DID say.."For a skinny little thing, you sure have hard bones!" so yes for that I am grateful!
Thanks for supporting and reading my blog!
My best to you and your continued re-birthdays!
Wow, that does sound awful! Mine haven't been that bad, if it were, I'd get off the bed and slug someone! I am puzzled though, I have osteoporosis so you would think my Onc would have an easy time with my BMB procedures, but he doesn't. He says my bones are hard too, and he can never get the aspiration because the marrow is too thick. Three BMB's and no fluid. I'm thinking my next BMB should be done by another Onc.ReplyDelete
Morphine for a headache and nada for BMB, crazy!
I know, huh? Never again though!!ReplyDelete