BMBx #10

BMBx - Bone Marrow Biopsy. Thursday 6/28/2012. 

Tomorrow will be the 10th time I have to endure this procedure. Hands down, this has been the single, most painful of all medical procedures for me, because even though it lasts about 5-15 minutes depending on the technique and experience of the doctor or nurse performing it, there's a baseline for the amount of pain you'll feel.

In comparing all of the painful events that have taken place in the last 2.5 years, there are two different types of pain: acute and chronic. Acute to me means an extremely unbearable instance of pain and chronic is mostly long-term pain, which in the recent past has also been largely unbearable as waking up everyday with the same feeling of something destroying your body adds up to a burden more than one can handle. A BMBx belongs to the acute category and the only way for me to convey how deep into your bones they reach with that needle is through this video. It's one thing to try to put into words what exactly they do, which I don't think I can even fairly accomplish, but a whole another to have a video of the entire procedure.

http://www.youtube.com/watch?v=qfOeGWRmyl0&feature=relmfu

http://en.wikipedia.org/wiki/Bone_marrow_examination

 I don't exactly act like this girl when I'm in there anymore as I'm well aware of what is to come, but the first time they performed it on me, I felt as if I will never be able to walk again due to this giant hole being drilled into the back of my hip. My bones were so strong at that point that the nurse practitioner couldn't even insert the needle deep enough into the bone marrow to be able to take an aspirate sample. She drilled me for 10 minutes as I laid there wondering when this is going to be over and screaming in pain. Eventually, I was sick of screaming and started to cry, because I didn't know why I deserved torture of that extremity and started a  mental list of the darkest moments that I knew I would experience in the months and years to come. She finally quit and left to ask the doctor what she should do and he told her to just start over and try the left side. I do not understand why they did not choose the left side to begin with as I'm a right handed person, so my right side is much stronger than my left...She came back and told me this, but gave me a 30 minute break in between the two tries.

Those 30 minutes were eternities to me. The darkest eternities. Imagine having felt that degree of pain for the first time and thinking that wasn't even as deep as they want to go. How much worse is that going to feel? How much longer is that going to take? The worst part, repetition of the entire procedure, one more hole in the hip and soreness for months on both sides. Thankfully, she succeeded in cracking into this one and took the aspirate. They use a hollow needle as the base so that they can insert another one to pull out the aspirate sample. When they're doing this,  it feels like someone is pulling the life right out of you. I never knew what bone marrow really was, but when they took an aspirate from it, I knew exactly deep they went in and wondered how that part of my body will ever repair. Older people probably faint when they're experience this step. If they have a sufficient amount of aspirate, they move the base in deeper to get the actual biopsy, meaning a chunk of your bone. All of this ideally is done within 5-10 minutes, but most of mine have taken longer. At Hopkins, they did a very in depth biopsy, where the aspirate was taken about 4-5 times. Usually, having this done once during the whole thing is painful enough, but that day, I was very, very close to losing consciousness due to pain. These days, I barely make a sound when the pain hits me, but it takes a tremendous amount of self control to not beat the crap out of the person doing this to you. I just try to grab onto the bed I'm laying on or whatever else is within reach when the pressure along with the pain starts. 


The best strategy is to just not think about the pain until it actually comes, because that is a complete waste of time. 

What a G

At the doctor's office today, a student was shadowing my oncologist. Before coming in to see me, they discussed my case and I just happened to be in the room right next to them. It was pretty weird hearing him summarize the entire case from the beginning until now. Here's what he said to the student:

"Our next patient is a young woman with Acute Lymphocytic Leukemia who I diagnosed about 2 and a half years ago. She received what we call the hyper-CVAD chemotherapy regimen and she handled it very poorly requiring us to stop the treatment halfway. She experienced extreme toxicity and remained in the ICU for quite a bit of time and developed an uncommon complication that patients sometimes experience with chemotherapy called, Reversible Posterior Leukoencephalopathy Syndrome (PRES), meaning swelling of the brain causing temporary seizures and brain damage. Over the next few months after that, she recovered, but couldn't handle maintenance chemotherapy either. She did go into full remission following the first cycle of chemo and did well between the critical illness following the initial treatment and the relapse. The relapse required a bone marrow transplant, but her insurance company required her to choose from either Johns Hopkins or VCU for the procedure. The problems with the seizures due to the Reversible Posterior Leukoencephalopathy were seen recently with another trip to the ICU post the transplant process which included full body radiation as well as high dose chemotherapy generating similar toxicity as the first round of treatment. She was at Hopkins for the last few months, but now is back in the area and we are following her closely. After the initial transplant protocol, there were problems such as GVH, CMV, liver damage, etc. She requires blood transfusions due to the medications she is on for these conditions as they reduce the ability for the marrow to produce new blood cells as well as neupogen shots for the neutropenia. The comprehensive metabolic panel (CMP) pretty much looks normal now, with the liver healing over time. Let's see how she is feeling today."

Hearing such a concise summary of all that has happened since the beginning gave me an outsider's perspective that I never get. It's always me reflecting on my own condition. I wondered what the student thought before he came into the room to see me with the doctor and what he expected my present condition to be. He probably thought I would be in a wheelchair or extremely weak where I required a lot of help walking and definitely not expecting me to say that I'm doing well when the doctor asked, "how are you doing?" I could sense some degree of relief in his mannerisms after our interaction, but he entered with a surprised look on his face. Anyone who hears the details written above or in my medical records would not expect me to be where I am today.

I can imagine what they think in their head once they put together a picture of all that's written above. That picture is not what I look like. It's not at all what I feel. I got lucky to have survived the worst, but after that, I did everything I could to undo the damage, because I wanted my old life back and no one was going to just hand it to me. Not even the passing of time. These students read about me, and then they come see me, and when I walk away, they must think, "wow, what a G!"

An article explaining PRES:

http://www.kma.org.kw/kmj/Issues/June2006/Original%20Article/78-04%20Reversible%20Posterior.pdf

http://www.newyorker.com/online/blogs/newsdesk/2012/06/atul-gawande-failure-and-rescue.html

Good article.

At times I just think I'm going to burst and the aftermath will be no messier than what has been created of me in the last 8 months. People are sick of hearing the same thing over and over again - why I can't see them and how my blood counts are too low. Half of the time they don't even understand what that means and having to explain over and over again, I just don't have the patience for that any more. They don't have the patience to keep asking me when they can see me and get a vague answer. Over time, it takes a toll on those relationships no matter what.

Why is my blood not growing? Why do I need to get transfusions every couple weeks or so? Well, mostly because of the complications that happened from March until now. They are resolving, yes. With a lot of medication and a lot of resilience, I am stronger than say a month ago. I couldn't walk then without some support, but the strength has been coming back. The only setbacks are the days when I'm losing blood and my cells are dying, but even on those days, I can go about my daily routine. My fear now is what if this is a long term condition? What if it takes years for my bones to make their own blood and in the meantime too much passes creating more and more health issues. People keep saying, oh a few more months and you'll be fine. Well, that's no longer a guarantee. It's not a promise. All the doctors can assess is a day to day report, there can't be any forecasts.

A lot of times, I'm neutropenic and have to say no to even people coming over. I can't go anywhere myself during the day because the sun burns me. I haven't gone anywhere since Jan. 1st except the hospital and the doctor's office. What kind of a mental condition do you think that has put me into? Don't you think I'm gonna start taking risks now and not wait for my cells to grow? I have to balance the risks I take with the risk that this may always be the case and waiting is just a waste of time. I'm not getting any younger and the last time I waited for stuff, it was the wrong thing to do. Why? Look where I am now. What if I never took a risk and danced again and just thought ok 3 years from now, I won't be doing chemo and I can do whatever I want? I would have no new memories to live off of now. That's all I do now - live off of memories. There's no guarantee even now that I won't relapse again and that in a few months, I'll be doing whatever I want.

I know, I know, I should just be happy I have a second chance. A lot of people in my situation don't get that. I saw a young patient the other day at the doctor's office looking at his blood report and felt sick to my stomach. I knew exactly what he felt before he was handed that piece of paper and having it in his hands finally and interpreting the results are one of the scariest things I have ever felt in my life. I wanted to hold his hand and hope that he's as lucky as me or even luckier and that the fact that his hands were also shaking didn't mean he was expecting something awful. A lot of time, we just expect nothing and that's the best plan, because wasting time in formulating anything beyond a few days at a time is foolish when sitting in a cancer patient's chair. If you show up at your doctor's office every time hoping to see unrealistic results, the disappointment is too great; there's no need to spend time thinking about the results of your biopsy or blood tests. Take the day you have off and chill. Who knows, tomorrow they might send you to the hospital again. I drove by INOVA Fairfax before the relapse with an amazing fear and just wished so badly that I wouldn't have to go there again, but what was the point in that? I've added Hopkins to that same list of places that scare the bajeesus out of me.