This morning Terry and I visited Beach Pea and his studio. The kiln had been fired yesterday and was still over 200 degrees. We hung out for a while, drank coffee and headed home. Around lunchtime, Tommie arrived from the cape and I invited Kate over for a study break. She proved to be both Maggie and Kita's favorite person ever, but they left her alone long enough to eat lunch with us.
Tommie and my next activity was to take Ellie to every shoe shop in the SeaCoast looking for the ideal birthday boots for an eleven year old. We finally found them at the closest shoe shop to our house, Bootleggers, which we had not even considered until we were desperate. Next year, we'll start there. The good news is that I was able to get chocolate in Portsmouth from where else? to take up for the nurses at the end of the week when I do chemojail.
For our capstone of the day, Tommie and I did the Fox Point 5 mile road race. It is a beautiful and very fun race in Newington which we walked. Our pace was about 16 and a half minute miles, but that is ok when I think about a hemoglobin of 10.5 and a VAD two days ago. I am a little tired now, but not badly. I think I may be a bit stiff in the morning, but that is why they make tylenol. Fox Point is one of the nicest of the Sea Coast Road Race Series races and the first year was for sure my favorite. Now, it's tied with the Market Day Race for my favorite.
If you are a runner or walker at all, consider doing the Road Race Series. It's good fun and keeps one motivated through the whole summer. I have gotten two jackets in previous years and loved wearing them, but this one (which I am on target to get), will be very special. The next races are both 5K's and the first one in early October should be at a time when I'm feeling fairly decent, but I'm a little worried about the second one which will be a few days after likely chemo jail #3. However, it's only 5K and there is no rule against using a wheelchair so Tommie says she'll push me if need be. Also, the worst time is not the first few days I'm home, but a few days after that. We'll see. I may need to be wheeled to my jacket.
For those of you who read every day, you may remember that I wanted to talk a little bit about bone marrow biopsies (BMB). I have now had four, two of which were painful and two of which were not. Even the ones without pain were uncomfortable and unpleasant, but they completely lacked the electric, roving, must-be-attended-to feeling that the ones with pain featured. The difference (I've been told) is the speed that things are put into and taken out of the marrow space. Evidently it does not like its pressure changed one bit. Of course, no one wants to gratuitously hurt their patient, so you would think that everybody would be really excited to learn which steps need to be done slowly to avoid pain. You might think that slowly the non-painful type of BMB would take over and replace the painful BMB as people noticed how much nicer it was for patients to miss out on the special pain of a BMB. You'd think wrong.
I have a clinic patient who has probably had two dozen BMBs (treated in Boston). She tells me that they all hurt and that they are mostly done by trainees. Now that I have learned that a BMB does not have to hurt, I cannot believe that she has been subjected to that sensation over and over and over again, every time gratuitous. I am not sure why the better innovation has not spread; that it takes more time seems possible, but really five minutes on a thirty minute procedure? Give me a break. It is possible that those who are doing more painful BMBs don't know that there is a better way. I would believe this if it was only older docs whose BMBs were painful, but my patient's and my experience with painful fellow BMBs makes this more doubtful. Or, if it is the case, why don't they know? Why has an innovation (evidently) that makes a painful procedure merely unpleasant not widely known about? Can it be that the people doing BMBs care so little for patient comfort that they have not noticed? Certainly, if anyone does a BMB on me that is painful again, they will be educated fully on the importance of not changing the pressure in the marrow space quickly. Maybe other patients just figure that some marrows hurt and some don't and there's nothing the practitioner can do to make it better? When they mention to the person whose marrow hurt that it hurt, everyone thinks it's the luck of the draw so there is nothing to be learned here. It's all very discouraging. Not only do I not want pain with BMBs, I want painful BMBs to stop for everyone. (disclaimer: when I say I had two BMBs without pain, I really mean NO pain. I'm sure it's not completely possible, even with perfect technique to always do painless BMBs, but I am equally sure that it is possible with better technique to do far more painless BMBs. Also, the unpleasant part, the lidocaine injections, don't have a painless replacement at this point.)
The "why do people use less than perfect technique for BMBs and cause unnecessary pain" question is reminiscent of why do people neglect to wash their hands and cause unnecessary infections question. I think health care facilities have done a remarkable job at changing the culture around hand washing and we're in the midst of a culture change about treating pain. Next, perhaps, a culture change about causing pain.
I wish I understood why a simple change to a procedure that eliminates its pain is not more widespread. I hope I can figure out why and help it spread further. Even better, I hope it gets spread more widely, quickly. I hope the innovations that would make your life easier are known to you or revealed soon.
Showing posts with label bone marrow biopsies. Show all posts
Showing posts with label bone marrow biopsies. Show all posts
Saturday, September 8, 2012
Thursday, September 6, 2012
Day 82 - good news, VAD in, dinner had
Today had two pieces of excitement: my bone marrow results came back a day early and I got my VAD. Dr. Hill called me to tell me they were normal just as the nurse was calling me in to pre-anesthesia for my VAD. I did get to talk with him a little bit, but mostly just had to go so I could do my pre-op stuff, i.e., hurry up and wait.
Dr. Hill said the flow cytometry came back normal and the microscope view came back normal except there weren't as many cells as they might expect so something is surpressing my bone marrow, probably the stupid virus. There was NO, not even a speck, of evidence for leukemia resurgence. So, excellent, excellent news. Phew! I am going back to plan A of consolidation #2 on September 14.
I will be getting this consolidation chemo through my brand new port that Dr. Mahon put in today. This was my first time at CMC as a patient and it was as wonderful an experience as I expected. Of course, I knew almost everyone who worked on me today, even in the OR because many of the nurses had worked on the floors before the OR. I saw several of my doctor friends, including Dr. Fahmy. He asked me if I were no longer in practice and I told him I had leukemia which he had not known. CMC clearly takes patient confidentiality very seriously, as he is one of the VP's at CMC and didn't even know why I had evaporated. Impressive. It was delightful to see all my old pals and to feel really well loved, supported and cared for by the people taking care of me.
Dr. Mahon said that Dr. Hill seemed surprised that he just said, "OK, we'll put the VAD in tomorrow." Dr. Mahon and really all the CMC surgeons have such a nice "can-do" attitude. One never feels like they are looking for an excuse to not do something; they answer yes instinctively. Speaking here as a doctor not a patient, it is so wonderful and makes life so much nicer.
Let me tell you about the day. I got there at 2:30 as instructed, hungry and thirsty. They had me put on a gown and wait in the bed. Dr. Mahon had some sort of other case in specials that was taking a longer time than expected and the nurse kept telling me it was a "zoo" today. This is probably about the best one can do. I don't really want to know just before the surgeon takes me to the OR that there were unexpected complications in the previous case. "Oh, he was caught by surprise by that bleeder and, you know, coding a patient takes a lot longer than you might think." Or "he didn't plan the previous case before you all that well and there were several complications that we weren't prepared for."
Anyway, the OR nurse came and interviewed me and was one of my old E200 friends and it turned out also knew Eva who had stopped by to say hi. Then we waited a long time and started to worried that by the time I went to the OR, had my procedure and recovered that poor Ellie would have been alone a long time. So, we enlisted my back up driver, Ana, and Terry went home to Ellie. Soon after he left, Dr. Mahon came in, examined and interviewed me and then the anesthesiologist who was one of the few I hadn't met. He had, however, been at a talk I gave a few months ago about palliative care so that was nice. He told me he thought it was a good talk. He was really interested in how I had gotten my diagnosis, how treatment was going, etc. and we had a very nice chat. I warned him that I was a lightweight for benzo's and he gave me one milligram of versed and I started to tell him the story of how I went to the cancer committee the day I had my suspicious CBC and how the next day everyone kept saying, "did you know you had AML when I saw you yesterday morning?" but I didn't get more than two sentences out. Next time I see him, I'll have to finish the story.
The next thing I knew, port in place, I was back in pre/post. I think I dozed off one more time, then woke ready to eat toast and drink cranberry juice. I dressed, Ana came in and off we went. Home to Terry, Ellie and delicious pizza.
I couldn't figure out exactly where in my day to put this jewel, so the end is as good as anyplace: here's a tip for budding nurses and doctors: "I feel for you, but the people I really feel sorry for are the ones who have to go without drinking for twelve hours" is maybe not the most sympathetic thing to say. A better option might be: "I feel for you; let me see if anesthesia will let you have ice chips." Try it out; it only hurts a little.
Other than that one nurse who I think was trying to be sympathetic, but was just slightly to the side of sympathetic, everyone, absolutely everyone, even the woman who was moving the extra beds around was kind, sympathetic, supportive, even loving. Totally blown away by the great care.
For you, I wish you an experience so much better than you were expecting that you are blown away, too. For me, I'll go with not too much pain and swelling from my new VAD.
Alternatively, I could wish you good news too and for me, I have no further wishes along those lines since I got my good news today.
Wanna see my port? I put it after the jump so you can avoid it if you want to.
Dr. Hill said the flow cytometry came back normal and the microscope view came back normal except there weren't as many cells as they might expect so something is surpressing my bone marrow, probably the stupid virus. There was NO, not even a speck, of evidence for leukemia resurgence. So, excellent, excellent news. Phew! I am going back to plan A of consolidation #2 on September 14.
I will be getting this consolidation chemo through my brand new port that Dr. Mahon put in today. This was my first time at CMC as a patient and it was as wonderful an experience as I expected. Of course, I knew almost everyone who worked on me today, even in the OR because many of the nurses had worked on the floors before the OR. I saw several of my doctor friends, including Dr. Fahmy. He asked me if I were no longer in practice and I told him I had leukemia which he had not known. CMC clearly takes patient confidentiality very seriously, as he is one of the VP's at CMC and didn't even know why I had evaporated. Impressive. It was delightful to see all my old pals and to feel really well loved, supported and cared for by the people taking care of me.
Dr. Mahon said that Dr. Hill seemed surprised that he just said, "OK, we'll put the VAD in tomorrow." Dr. Mahon and really all the CMC surgeons have such a nice "can-do" attitude. One never feels like they are looking for an excuse to not do something; they answer yes instinctively. Speaking here as a doctor not a patient, it is so wonderful and makes life so much nicer.
Let me tell you about the day. I got there at 2:30 as instructed, hungry and thirsty. They had me put on a gown and wait in the bed. Dr. Mahon had some sort of other case in specials that was taking a longer time than expected and the nurse kept telling me it was a "zoo" today. This is probably about the best one can do. I don't really want to know just before the surgeon takes me to the OR that there were unexpected complications in the previous case. "Oh, he was caught by surprise by that bleeder and, you know, coding a patient takes a lot longer than you might think." Or "he didn't plan the previous case before you all that well and there were several complications that we weren't prepared for."
Anyway, the OR nurse came and interviewed me and was one of my old E200 friends and it turned out also knew Eva who had stopped by to say hi. Then we waited a long time and started to worried that by the time I went to the OR, had my procedure and recovered that poor Ellie would have been alone a long time. So, we enlisted my back up driver, Ana, and Terry went home to Ellie. Soon after he left, Dr. Mahon came in, examined and interviewed me and then the anesthesiologist who was one of the few I hadn't met. He had, however, been at a talk I gave a few months ago about palliative care so that was nice. He told me he thought it was a good talk. He was really interested in how I had gotten my diagnosis, how treatment was going, etc. and we had a very nice chat. I warned him that I was a lightweight for benzo's and he gave me one milligram of versed and I started to tell him the story of how I went to the cancer committee the day I had my suspicious CBC and how the next day everyone kept saying, "did you know you had AML when I saw you yesterday morning?" but I didn't get more than two sentences out. Next time I see him, I'll have to finish the story.
The next thing I knew, port in place, I was back in pre/post. I think I dozed off one more time, then woke ready to eat toast and drink cranberry juice. I dressed, Ana came in and off we went. Home to Terry, Ellie and delicious pizza.
I couldn't figure out exactly where in my day to put this jewel, so the end is as good as anyplace: here's a tip for budding nurses and doctors: "I feel for you, but the people I really feel sorry for are the ones who have to go without drinking for twelve hours" is maybe not the most sympathetic thing to say. A better option might be: "I feel for you; let me see if anesthesia will let you have ice chips." Try it out; it only hurts a little.
Other than that one nurse who I think was trying to be sympathetic, but was just slightly to the side of sympathetic, everyone, absolutely everyone, even the woman who was moving the extra beds around was kind, sympathetic, supportive, even loving. Totally blown away by the great care.
For you, I wish you an experience so much better than you were expecting that you are blown away, too. For me, I'll go with not too much pain and swelling from my new VAD.
Alternatively, I could wish you good news too and for me, I have no further wishes along those lines since I got my good news today.
Wanna see my port? I put it after the jump so you can avoid it if you want to.
Wednesday, September 5, 2012
Day 81 - another bone marrow biopsy
Just to let you know I am bone tired tonight and so this will be very short. I did get the thread last night and finished one of the two ends of the pillow this morning. I am so pleased with it. I won't put a picture up until Tommie sees it this weekend because I want her to see it in person before she sees the picture.
Terry and I went up to Lebanon and got my labs which were just about the same as yesterdays--no worse, but no better. Dr. Hill said that he was pretty sure that this was just due to the virus, but that there was a little chance it was due to leukemia relapse and (of course) that is the kind of thing that is best caught and caught early so we should just do the bone marrow biopsy and then we would know. I tried to talk him into putting it off until Friday, but he pointed out that then if I had relapsed we would have lost several days, maybe even more than two because of the intervening weekend. OK, fine.
Beth, the nurse practitioner did it and I told her I'd give her an A+. There was nothing that was painful about it and she confirmed that it's all in the speed of inserting and removing things from the bone marrow space. There were a couple of times when I said to myself, "that could become pain," but it didn't. Her assistant and I prattled on and on about the best restaurants in the SeaCoast and she told me about a great chocolate and bakery shop near Lebanon. I am hopeful that my love of sweets will return and I can visit there in earnest in a few months.
I would like to write more about bone marrow biopsies and pain, but that is not happening tonight.
Also, just in case I need chemo this weekend (I won't; I won't; I won't; the leukemia is not back!), I need a port placed. The nurses who put in the PICC lines said (very nicely) that they do not want to see me again because my anatomy is too weird. The surgeons in Lebanon said they would be happy to put an access device into me next week, but unless it is an emergency, they can't do it this week. So, I called Dr. Mahon and didn't even have to beg. I am sure it was one of the odder phone calls he has gotten from a patient asking him to put in their own device, but he was very gracious and I am getting my VAD tomorrow afternoon.
I hope you are able to get help getting what you need without having to beg. Thank you, Dr. Mahon.
Terry and I went up to Lebanon and got my labs which were just about the same as yesterdays--no worse, but no better. Dr. Hill said that he was pretty sure that this was just due to the virus, but that there was a little chance it was due to leukemia relapse and (of course) that is the kind of thing that is best caught and caught early so we should just do the bone marrow biopsy and then we would know. I tried to talk him into putting it off until Friday, but he pointed out that then if I had relapsed we would have lost several days, maybe even more than two because of the intervening weekend. OK, fine.
Beth, the nurse practitioner did it and I told her I'd give her an A+. There was nothing that was painful about it and she confirmed that it's all in the speed of inserting and removing things from the bone marrow space. There were a couple of times when I said to myself, "that could become pain," but it didn't. Her assistant and I prattled on and on about the best restaurants in the SeaCoast and she told me about a great chocolate and bakery shop near Lebanon. I am hopeful that my love of sweets will return and I can visit there in earnest in a few months.
I would like to write more about bone marrow biopsies and pain, but that is not happening tonight.
Also, just in case I need chemo this weekend (I won't; I won't; I won't; the leukemia is not back!), I need a port placed. The nurses who put in the PICC lines said (very nicely) that they do not want to see me again because my anatomy is too weird. The surgeons in Lebanon said they would be happy to put an access device into me next week, but unless it is an emergency, they can't do it this week. So, I called Dr. Mahon and didn't even have to beg. I am sure it was one of the odder phone calls he has gotten from a patient asking him to put in their own device, but he was very gracious and I am getting my VAD tomorrow afternoon.
I hope you are able to get help getting what you need without having to beg. Thank you, Dr. Mahon.
Friday, July 27, 2012
Day 41 bone marrow results
Don't bury the headline: bone marrow results from Tuesday were normal. Everything was good. The leukemia appears to be among the missing, but not missed at this point. It has been beaten down to a level so low we cannot find it anymore, but it is still there in the corners in very small amounts and would come back if we gave it half a chance. Therefore, we will do more chemo. It turns out I was wrong and it's only three or four more rounds of chemo with maybe a stem cell transplant from me (autologous is the fancy word for it) thrown in for good measure. At this point, we are not anticipating the donor bone marrow transplant that had me so worried before to be necessary at all at any point. I'll talk a little about the difference between an autologous and allogeneic (from somebody else) another day.
Today's visit was sort of odd in that the fellow, Dr. Kebbekus, seemed to have become my main doctor with Dr. Hill just coming in at the end to say hi and check on the important details. Terry says that I am no longer interesting now that I am getting better and have become a "fellow case." That is OK; as I tell my patients all the time you don't want your doctor to find you interesting. (Sometimes we joke about the worst thing to hear one's doctor say, "O, I've read about this, but never seen it before" is usually people's favorite for things they don't want to hear me say.) At any rate, they both agree that I should go back to chemo jail on August 3'rd (Friday) for five days of chemo. The way it works is two doses twelve hours apart on day 1, 3 and 5. Usually they do the first dose in the evening and the last dose in the morning so the whole thing takes six days by the time it gets organized, the line is put in, etc. So, I think that means in Friday, out Wednesday am. The good thing about this admission is that I won't be neutropenic at all (my immune system will not really be affected by the chemo until I get home) so I can skip the mask and go outside and be a fairly normal person except that I will be a hospital patient.
Afterwards I will go home to recover and if I do well and don't have fevers, I can stay home. I will have to go in for blood counts a lot and possibly some transfusions. If I do get fevers, I think I can go to CMC to get treated for them (yeah for local hospital!). Then after I feel good, we'll do it again, but only 3 or 4 times which is better than the 5 I had somehow thought would be required.
After the appointment, we went to the coop which is a nice post hospital visit tradition we are developing. They have good yogurt and sandwiches there so I ate dinner on the way home while Terry fought with all the people who left work early to get a jump on drunk driving their way to the beach.
Today's visit was sort of odd in that the fellow, Dr. Kebbekus, seemed to have become my main doctor with Dr. Hill just coming in at the end to say hi and check on the important details. Terry says that I am no longer interesting now that I am getting better and have become a "fellow case." That is OK; as I tell my patients all the time you don't want your doctor to find you interesting. (Sometimes we joke about the worst thing to hear one's doctor say, "O, I've read about this, but never seen it before" is usually people's favorite for things they don't want to hear me say.) At any rate, they both agree that I should go back to chemo jail on August 3'rd (Friday) for five days of chemo. The way it works is two doses twelve hours apart on day 1, 3 and 5. Usually they do the first dose in the evening and the last dose in the morning so the whole thing takes six days by the time it gets organized, the line is put in, etc. So, I think that means in Friday, out Wednesday am. The good thing about this admission is that I won't be neutropenic at all (my immune system will not really be affected by the chemo until I get home) so I can skip the mask and go outside and be a fairly normal person except that I will be a hospital patient.
Afterwards I will go home to recover and if I do well and don't have fevers, I can stay home. I will have to go in for blood counts a lot and possibly some transfusions. If I do get fevers, I think I can go to CMC to get treated for them (yeah for local hospital!). Then after I feel good, we'll do it again, but only 3 or 4 times which is better than the 5 I had somehow thought would be required.
After the appointment, we went to the coop which is a nice post hospital visit tradition we are developing. They have good yogurt and sandwiches there so I ate dinner on the way home while Terry fought with all the people who left work early to get a jump on drunk driving their way to the beach.
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!
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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.
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!
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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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