My Third Bone Marrow Biopsy

What I realized very quickly yesterday during my third bone marrow biopsy is that the brain does a great job at blocking out most of our most painful experiences.  I thought  I was accurately remembering my two previous bone marrow biopsies quite well but I was sort of fooled by my brain doing what it does best...  adapting and protecting us.  

As the doctor was digging deeper and deeper into my pelvis yesterday and the pain was getting unbelievably unbearable, a lot of my memories that I had completely forgotten from my previous bone marrow biopsies came flooding back in vivid detail.

Apparently, the brain adapts to pain.  I've noticed this with my extensive spinal injuries as well as my everyday bone pain caused by my primary illness.  Honestly, for the most part, I don't really notice this constant chronic pain anymore.  It just sort of simmers there in the background.  I don't even remember what it is like to be pain-free.  I'm in significant pain everyday but my brain seems to block most of it out.  It isn't until I notice a change in my demeanor that I realize I am in significantly more pain and that I should do something about it.  

When I am in acute spinal pain, the memories of my long, grueling spinal recovery come flooding back.  It isn't until I experience the acute spinal pain again that I suddenly remember how intense the pain was and there being absolutely no relief for it no matter what I try.  I suddenly remember all the hospital visits and x-rays and CT scans and MRIs.  I remember the torturous tests.  I remember the neuro-surgeons and evaluations in darkened examining rooms with imaging up on lightboxes on the wall.  I suddenly remember the intense physical and occupational therapy, eight hours a day, five days a week, for six solid weeks to help me walk again, stand again, do menial things around the house again.  I suddenly remember the pain during that intense physical and occupational therapy.  I suddenly remember all of the weird exercise stations resembling a weird combination of gymnastics equipment and kindergarten activity centers as well as little sections of homes where I can practice new techniques for accomplishing menial home tasks that most people don't even think twice about accomplishing with little to no thought.  I suddenly remember the smells of the therapy facility, of the hospitals.  I suddenly remember music from that time.  

Then the memories of losing my career which involved temporarily losing my flight status, my worldwide status, my security clearances, etc, come flooding back.  I suddenly remember losing my home, losing my wife at the time.  I lost my mobility, freedom, career, even purpose.  I had to start over at square one again, through very difficult physical and emotional pain, as though I was just graduating from school except now I was nearing 40 years old.  Every time my spinal injuries flare up into significant pain, all of these seemingly forgotten memories come flooding back.  Then I feel like I am back at stage one of grief again for a short time until I work through the stages again.  It is a cycle that repeats, over and over.  This has been happening for 25 years now.

I forget how rough and how bad things were after my extensive spinal injuries.  I forget until my spinal pain worsens again then all those memories come flooding back.  That's the sort of thing that the brain does for us...  it pushes those painful times back to the far recesses of our subconscious. 

A similar thing happened yesterday during my bone marrow biopsy.  As I was experiencing pain during the biopsy, memories I had long forgotten about my previous bone marrow biopsies came flooding back in an instant.  

At one point during yesterday's biopsy procedure, one particular memory came flooding back from my first biopsy so I started telling the doctor about it as she was digging deeper into my pelvis.  This memory was of after the biopsy when the nurse rolled me over from my stomach onto my back.  As she rolled me over, my leg flopped off the table just dangling from my hip which was still on the table...  the nurse looked at me in horror and said, "Your just joking around, right?"  

No...  I couldn't move my leg.  It was numb and it was under the power of only gravity.  Apparently the doctor must have hit a nerve when he was injecting me with the local anesthetic.  As the anesthetic wore off, I slowly gained more control of my leg again.

After conveying this long forgotten memory to my current doctor as she was working on me, she briefly stopped working on me and urgently asked, "That's not happening now, is it?"  I told her no and that it was just a memory I had forgotten to tell her about when we were discussing my history but that I was remembering more now due to experiencing the same pain again. 

During that first biopsy, that particular doctor bent the first aspiration needle and it got stuck in the bone...  he finally got it out...  then used a heavier gauge needle...  bent that one too and really got that one stuck in my bone.  The nurse was holding me down as the doctor was attempting to jerk it out of my bone.  He then had to call for someone to bring an even heavier gauge needle.  Then, afterward, my leg flopped off the table as gravity was its only controller for a while.  

A lot of similar memories came flooding back during yesterday's biopsy.  My current doctor was sort of laughing about how the brain protects us by pushing those terrible memories deep back into our subconscious.  

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So, around noon yesterday, Sheila and I headed up to the University of Vermont Medical Center in Burlington for my third bone marrow biopsy (the first one was about 20 years ago).  I was confident that I would not experience the horrors of my first biopsy (only some of which are explained above).  I now have a new oncology team and it is a very experienced and accomplished team.  Coming into this procedure today, I knew there would be some pain but, honestly and in hindsight, I realize I had forgotten about how much pain and even the type of pain.  

During the drive up to the hospital though, Sheila and I talked lightly about previous biopsies and our last discussion with my oncologist.  I was actually telling her that I couldn't remember some of the biopsies yet I felt I had a good bead on what to expect on this day.  I was feeling good about this biopsy and, at the time, I just wanted it to be off my calendar and in the past.  

My overall health has been really lousy lately so, if this biopsy can find something that we can fix, then that would be great.  It would be terrible to not check and then later find out that I had some new condition that could possibly be slowed down or put into remission.  So, I need to do the bone marrow biopsy and I have no problem with that.  I'm not one to procrastinate or do things slowly.  I like to jump right in and push on through to completion.

Once we arrived at the hospital, we sat in the waiting room for a bit.  I couldn't help but wonder about the overall health of each of the patients waiting with me (similar to "people watching" at the mall or in a city).  I noticed a couple of things right away...  

First, with the exception of maybe one or two patients, Sheila and I were the youngest in the room.  Everyone else was in their 70s and 80s.  The next thing I noticed was that almost all of these patients knew all the nurses and doctors by their first names which is an indication that they were receiving ongoing chemo treatments.  I've seen this before while Sheila was going through her radiation treatments.  Even we knew everyone by their first names back then.  Seeing all these elderly patients makes me wonder how people that age can find the energy to endure a grueling chemotherapy course of treatment.  It also made me wonder about the usefulness and purpose of people living longer and longer if they are going to have to find the energy to endure intensive therapy like chemotherapy.  So I just sat there in the waiting room pondering these kind of depressing thoughts rather than get anxious about my own impending procedure.

At around 1:15pm, I was called in for the preliminary screening and blood drawing.  The doctor took a bunch of blood and then separated it into the appropriate vials.  I've been through this so often and for so long that I knew what each of the vials was for...  this color for this, that color for that, this other color goes to the Mayo Clinic.  That one vial headed to the Mayo Clinic is for a very specific test related to my primary illness, Systemic Mastocytosis.  The other vials would go to the lab in the hospital for all the usual work-ups.  

In this photo below, Sheila captured me leaving the room where they did the preliminary screening and bloodwork...

Within a few minutes, we were brought to the room where they would do the biopsy.  This room was opposite the open group chemo beds where patients were getting their chemo treatments.  There is plenty of room for family at each of the beds too.  As we waited, nurses kept checking in on us asking if we needed anything to drink, blankets, etc.  

I have to admit that I got a bit quiet at this point.  Part of it was due to not being able to think of anything other than what I was about to experience.  Part of it was due to my pre-medication beginning to affect me by making me drowsy.  The reality of where we were was also setting in at this point.  My mind was going to Sheila's recent cancer treatment as well as all the hospital visits for my own health problems.  I was already lying in a comfortable hospital bed and my eyes just wanted to close but I also wanted to get this done and get home.  

Although I was rather quiet, I had all sorts of stuff running through my head.  I was thinking about the procedure and about the things that are concerning my oncologist.  At this point, however, talking about it was only getting me a little anxious so I just laid there trying to relax.  

I was able to keep my own clothes rather than wear a hospital gown.  I've already been down this road a few times so I expected to remain in my clothes.  As such, I made sure to wear jeans I usually only wear around the house that have an elastic waistband.  They are sort of like denim sweats.  I wear these jeans around the house instead of looking like a slob in sweats.  These stretchy jeans that I usually only wear around the house, however, would make it easy for the doctor to get at my pelvis.  

I checked the settings on the little compact camera I brought along with us, shot a photo of Sheila, and then handed it back to her so she could shoot some photos through the procedure.

In this photo, below, the doctor was beginning to work on me...  disinfecting the area of my pelvis, putting absorbent pads under me and tucked into and over my clothes...  and explaining the plan.  I would remain in this position for the entire procedure.  At the moment, I was thinking this procedure would take about ten minutes or so.  I was so very much wrong in that estimation.  

They started with the first of three rounds of local anesthetic, each going deeper toward my pelvis.  The first one felt similar to getting a shot of novocaine at the dentist.  This one was a bit more intense though.  At the dentist, it feels like a tiny pin prick and then a slow light pressure.  This was more like a hot thumbtack, some deep pressure, followed by a cold wet feeling around the area. 

The second round of anesthetic was deeper and more painful.  The third round was more involved but with less pain, thankfully, due to having the previous two rounds of anesthetic.  Now, for some reason, I was starting to think that the worst was over.  At this point, however, I was still erroneously thinking that my previous bone marrow biopsies were quick.  On this day, it didn't work out that way.  Unfortunately, the worst wasn't over and it only got worse and worse throughout the procedure.  

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Within a few minutes of administering the rounds of local anesthetic, my doctor then spent quite a bit of time working her way in toward my bone with a large aspiration needle...  little by little...  carefully but firmly pushing in repetitive waves...  push, push, push...  little by little...  push, push, push...  constantly talking to me explaining what is happening and asking how I am doing.  As the pain gets to an unbearable level again, she stops and then adds more anesthetic.  

At this point, the pain is mostly a very deep pressure that is difficult to explain.  The pressure builds to a searing pain, then to a sharp pain.  We stop again and add more anesthetic.  It seems like the deeper we go, the more anesthetic we need to add.

After all these additional rounds of anesthetic, I'm thinking once again, "okay, the worst must be behind me now"...  with this much anesthetic, I shouldn't feel much unbearable pain, right?  

Wrong again.  

The pain of drawing out the actual samples is brutal...  more brutal than I had remembered anyway.  The doctor warns me that the pain will now get bad for a short time and advises me to take a slow deep breath through my nose and slowly exhale through my mouth on the count of three...  "three...  two...  one.... breathe..."  I breathe in deeply...  

The pain was brutal but it only lasted about ten seconds.  She had warned that I would feel the pain down to my toes but even that wasn't an accurate description.  I can't even accurately describe it.  It is like someone is forcefully pulling my skeleton and soul out of my body while, at the same time, applying a deep pressure like nothing I have ever felt before.  It is an odd pulling and pushing sensation combined together with a deep sharp life-sucking pain.

In my head, I'm thinking about Civil War casualties and limbs being sawn off with handsaws in tents with only alcohol as a pseudo-anesthetic.  I'm lying in this bed wondering as I did in childhood history classes how those soldiers endured through that trauma.  And, I did what I always have done in tough situations since childhood...  I reminded myself that "if others can get through this, so can I."  

It was around this point that the memory of my leg flopping off the table after the first biopsy came back to me all of a sudden.  Maybe it was because the pain was definitely throughout my pelvic region now as well as deep in my buttocks and thighs.  The doctor and I sort of laughed about me forgetting about my floppy leg and I put her at ease saying that I was not feeling that way today.  This is when we mused a bit about how the brain seems to mask bad or traumatic experiences.  

Once again, I began thinking, "okay, that is it, it's over and time to clean me up."  

It wasn't over.  We had more samples to draw out.  

She again warns me about more pain coming my way and tells me to breathe deeply on three...   "three...  two...  one...  breathe...."  

I breathe in deeply and another sample is drawn out with what feels like hundreds of pounds of pressure...  the pain is brutal...  again, as she is drawing out the sample, she counts down from ten.  When she gets down to three, the pain begins to subside a bit. 

By now, I am completely soaked in sweat due to the pain.  I am hot and sweating profusely.  The doctor stops again and asks how I feel perhaps because of my involuntary groaning and moaning or perhaps because I am now sweating profusely.  I inform her that, yes, the pain is unbearable again.  She then pulls something out of me and the sharpest of the pain is gone.  She administers more local anesthetic then puts whatever she pulled out back in me.

Then it was time for yet another sample.  Now I'm thinking, "when is this going to end?"  I'm wondering how much time has passed.  I'm wondering why I didn't remember my first two bone marrow biopsies being so involved...

She then warned me this one would be the worst of all of them and, yes, she was very correct.  She started her countdown for me to breathe deeply, "three...  two...  one.... breathe...."  

During this last sample, amidst drawing out the sample with what felt like an industrial-strength vacuum sucking through a Venturi tube, it felt like we combined all the pain and pressure of the first two samples and then some for good measure.  It felt like whatever she was drawing out was still attached and didn't want to be drawn out.  This one took my breath away and drew forth deep involuntary groans from somewhere deep inside me.  She again slowly counted down from ten as she drew out the sample.  This time the pain continued to increase and peaked around three and didn't taper off until after she said, "one".  

I was soaked in sweat.  I had tears in my eyes and I was glad we were done with the worst of this biopsy.  

The doctor said I could relax now and patched me up while talking about the procedure and the samples she aspirated.  I couldn't see what was going on behind me during any of this procedure but Sheila filled me in after the doctors left the room.

Until Sheila told me what they did, I had no idea that they took at least three samples including what Sheila described as "fluid and chunks".  During each of those countdowns from three and then me breathing deeply, I just thought she was still trying to press more deeply into my bone.  I didn't realize she had pulled out multiple samples.  Now it was beginning to make sense when I started to line up what I remember with what Sheila was telling me she saw...  multiple samples of fluid and chunks.  

The doctor applied pressure to my pelvis for about five minutes and then dressed the area.  

As she applied pressure to my pelvis, she asked me whether I had done any long term prednisone therapy.  I explained that I only recently did about six or seven days of prednisone after my hospital visit in January and also one of my pre-medication medications was prednisone so...  no, no long term therapy.  She explained that she felt my pelvis felt "soft and rubbery" which often happens after long term prednisone therapy.  I've already had a couple of bone scans and they found that my bones were fine but I suppose it looks like my oncologist may be ordering another new Dexa bone density scan.  My primary illness, over time, does terrible damage to my bones hence all the bone and joint pain I have each day. 

After applying about five minutes of pressure on my pelvis and dressing the area, then they slowly rolled me onto my back.  Since I was soaked with sweat due to the pain of the procedure, I was now shivering uncontrollably.  Sheila covered me in a blanket so I could warm up.  

We left the hospital at around 4pm just in time for rush hour traffic.  The drive home was no picnic either.  Every little bump in the road, every pothole, even the rumbling vibration of our studded snow tires was quite painful for the entire ride home. 

We were back in the house by 4:30pm, on the couch, watching television.  We ordered some pizza and garlic knots for dinner.  Before long, sitting on the couch was painful so we moved to the bedroom.  I took more medications including some that make me drowsy and that helped me sleep for a few hours.

I awoke at 2:30am, in pain again.  The pain wasn't terrible but it was enough to wake me up and keep me awake.  I decided to do some reading.  At 4:30am the pain was getting unbearable again so I got up, slowly limped to the bathroom, and then took another AlevePM.  I was hoping that the antihistamine in the AlevePM would allow me to fall back asleep but it didn't.  I continued reading until Sheila got up a little before 6am to get ready for work.  I decided to get up with Sheila, take more medications as well as my morning dose of my usual medications.  

I was told that tomorrow likely won't be any better than today.  We'll see how that goes.  Things are okay today though in the big scheme of things.

Now we're waiting on the results but this could take a while.  Some of the bone marrow biopsy specimens probably needed to go to the Mayo Clinic for specialized C-Kit testing.  This C-Kit mutation is a marker in the DNA or RNA for a more aggressive form of my primary illness, Systemic Mastocytosis...  hmmm...  it is likely in my RNA since it is found in the bone marrow.  

I'm not sure what I am hoping for here.  I guess I want to get back to a place of more stable health because I'm really struggling to get any little task accomplished even on a relatively "good" day (which is nothing even closely resembling a healthy person's good day).  I'm hoping we might figure out how to do that with this latest round of diagnostic testing.  Then again, on the other hand, I'm also hoping that nothing is found...  no cancers, no leukemias, no progression into a more aggressive Systemic Mastocytosis.  Then, I wonder how I am supposed to get to a more stable condition if nothing is found...  so, as you can see, I'm not sure what I am hoping for here.  

My primary illness, Systemic Mastocytosis, has no cure so we just try to manage symptoms as best as possible.  Maybe having COVID a few times has pushed my primary illness into overdrive and it will eventually settle down...  maybe...  hopefully?...  

Anyway, now we wait for test results and a pathology report...

UPDATE:  5pm - Sheila just changed my dressing.  As she was trying to carefully remove the original dressing, I told her that I felt like I was gored by a bull.  She replied, "well, you pretty much were!"  

She said the area looked good...  no swelling...  no redness...  and it appears to be healing well so she cleaned it up a bit and re-dressed it.  

I still feel like I was gored by a big ole bull!  I believe all of the anesthetic from yesterday has worn off.