Showing posts with label bone marrow biopsy. Show all posts
Showing posts with label bone marrow biopsy. Show all posts

Thursday, August 1, 2013

This is Spinal Tap – or – The Calm Before the Storm


Most of my time as of late has been spent in having baseline tests run and meeting the new medical staff, learning the new names, asking all the questions I can think of as well as the questions behind the questions. I’ve managed to get lost in the massive Seattle VA Hospital and wandered into the Emergency Room after taking a wrong turn, much to the amusement of a nurse. And *why* do the doctors look so young? Did Doogie Howser, MD take a spin through here?

While waiting and in between procedures, I’ve been chatting up my fellow transplant patients. Some of the caregivers have proven pretty opinionated, but my compadres with PICCs and ports are, to a person, really friendly and great to talk with. With nothing more than a handshake and a name, we’re all old friends already. A few of them have AML like I do, but the different conditions where bone marrow transplants are the prescribed protocol keep it interesting. I can’t pronounce all of the conditions, or drugs yet, but I do see that, once again, I’m the young buck on the ward.
My transplant has been hard-scheduled for August 21, which means the doctors have to decide my treatment protocol within the next couple of days. Depending on who you ask, there’s reasoning for either the mini or standard transplant. Each has its plusses and minuses, each has a lot of unknowns, and certainly each has its risks. But both have the same end result: I’ll have a new immune system and a new lease on life. My level of anxiety has been ratcheting down some as my burning questions are being answered, but there are still a lot of unknowns in a procedure that reminds me more of art than science. It really is a pharmacological miracle.
Bone marrow biopsy #5.
Lovely, huh? Drill, baby, drill.
Yesterday, I finished up my baseline testing prior to the transplant. Despite having had a bone marrow biopsy just a couple of weeks ago, I got yet another one as well as a lumbar puncture or “LP” as it’s called in the business. You might also say … wait for it … this is spinal tap. Of course, the procedures were done back-to-back, no pun intended, or maybe so. After all, both procedures are done on my back and they were done within minutes of each other.  Talk about fun! They were a bit more liberal with the pain killers (yeah!) and they let my son take some up close and personal pictures that show lots of nauseating detail for those who like that sort of thing. The only thing I need to do is get my PICC line dressing changed on Fridays and I have classes I get to attend with my son so we know the process for caregiving. So now, with the transplant’s scheduling and my testing done, that leaves a lot of time between now and then which is essentially unscheduled. The advice from the medical professionals: go see Seattle.

So the doctor’s orders have just taken a really nice turn!
This is Spinal Tap! (and yes, this really is me)
I should start by saying that the first scrip from the doctor right after my biopsy/LP for the post spinal tap headache was caffeine. He even said that on some occasions, they can give caffeine intravenously. And to think, all this time I thought that clever bit of repartée was something I said when I was dog-tired. Nope, they apparently really do it! So, with my two sons in tow, we took that medical advice literally and interpreted it in the words of good Will Shakespeare (I know he said this, don’t ask me how), Get thee to a Starbucks! I had to make sure my boys were in no pain as well after all. Since I had a little residual buzz going from the Demerol, my pinch-hitting photographer son now got to also be my chauffeur. Versatility Я Us!
That’s not to say that some sightseeing wasn’t already in the cards, but now it was doctor’s orders. Over the weekend, I met up with some high school classmates and took the scenic water tour on Lake Washington and Lake Union replete with some incredible kebabs on the barbie and some chipotle jam that will be in my cart the next time I hit Costco (Muchas many thanks, Bill & Michelle!). We found a deal at the base of the Seattle Space Needle that got us in to a number of local attractions with a significant discount, so in addition to the Space Needle, we’ve gone to the EMP Museum, taken a cruise around the harbor, visited the Seattle Aquarium, took the monorail over and wandered around the Pike Place Market. And yes, we made a pilgrimage to the original Starbucks. We still have tickets for the Museum of Flight and/or the Zoo (we have to pick one) and the Pacific Science Center. The Chihuly Garden and Glass Exhibition looks interesting and is right at the base of the Space Needle, so we may try that out.
Cruising around Lake Washington (l to r: my classmate Bobbie,
my son Austin, and Bobbie's son Wyatt on Bill & Michelle's
boat, the Mr. B
It probably sounds like it has been a busy week and, to be fair, it has been. On the flip side of that coin, once the transplant conditioning regimen begins, there won’t be much of anything going on outside the confines of the hospital for a few weeks and then it becomes a matter of a long, slow recovery to the new normal.
If you’re a Facebook friend, you can check out the pictures here; if you’re on Google+, you should be able to access the photos of us obeying doctor’s orders here.
With the iconic Seattle skyline in the background,
we had a great day for a cruise around the harbor.
In a real sense, this feels like the calm before the storm. There will be a lot of pain, discomfort, and all around yuckiness in the coming weeks, so I’m really grateful that these days leading up to that time is filled with some good memories with my two sons and of the city where the procedure that will keep me alive was pioneered. Sure, there is still some anxiety there over the unknowns and let’s face it, there will always be unknowns, but with the help of friends and family, I’m shedding the extra blood pressure and remembering that life is good and laughter is important and that making memories is more important than accumulating stuff, even if life is tough, the jokes are cheesy and the stuff is pretty cool.
Be well, stay strong, and much love to you all!  Oooh! Shiny object! Uh, Ritalin®, anyone? OK…give me the toxic chemical goodness and let’s get on with it!
Today’s music is from Linkin Park – Iridescent
When you were standing in the wake of devastation
When you were waiting on the edge of the unknown
With the cataclysm raining down
Your insides crying, "Save me now"
You were there, impossibly alone.

Do you feel cold and lost in desperation?
You build up hope, but failures all you've known.
Remember all the sadness and frustration
And let it go.
Let it go.

And in a burst of light that blinded every angel
As if the sky had blown the heavens into stars
You felt the gravity of tempered grace
Falling into empty space
With no one there to catch you in their arms.

Do you feel cold and lost in desperation?
You build up hope, but failures all you've known.
Remember all the sadness and frustration
And let it go.
Let it go.

(Instrumental Break)

Do you feel cold and lost in desperation?
You build up hope, but failures all you've known.
Remember all the sadness and frustration
And let it go.
Let it go.

Let it go.
Let it go.
Let it go.
Let it go.

Do you feel cold and lost in desperation?
You build up hope, but failures all you've known.
Remember all the sadness and frustration
And let it go.
Let it go.

Saturday, July 20, 2013

Drill, Baby, Drill!

Three times a week since I’ve been cut loose from the VA Hospital, my blood counts and chemistry have been monitored very closely. I’m now intimately familiar with WBC, RBC, HGB, HCT, PLT, ANC, and some other fun medical terms and drugs that I wish I didn’t know anything about. Since I have a central catheter (PICC) installed, getting a blood draw or an infusion of chemo, blood, or platelets are essentially painless procedures. They’re just time consuming. That became more of an issue as the weather got warmer and I became restless with being confined to the hospital. I got more of a case of cabin fever than anything else!

With a 28-day chemo cycle, my body's response was pretty predictable. That was the drill.

And then the call from Seattle came telling me that a bone marrow donor had been found and the routine changed. To be prepared for this new chapter, a bone marrow biopsy was required to ensure that I’m still in remission. I’ve had a lot of procedures, tests, pokes, and prods since this all began and honestly it hasn’t been bad.  More often than not, it’s a series of inconvenient truths that landed me in a hospital room and only when it became a cumulative thing did it really become what I would call bad. I would get something that, on a scale of 1 to 10, was a nominal 1 or 2, but when added to other 1s or 2s, it got worse and at some point, the group of small things overflowed and I would have my own personal meltdown.  A blood draw is not fun, but it’s barely a 1.  A headache is a 1.  Getting a PICC line installed is a solid 3, but those are really minor in the grand scheme of things because they pass rather quickly.  And let’s face it, a headache passes within 20 or 30 minutes after taking a pain reliever, so you can see that it hasn’t been too terribly onerous.

But there is one procedure I’ve had to undergo that has actually been pretty durned painful – the bone marrow biopsy.  There’s no getting around it – it hurts like a bear and makes you want to cuss like a sailor, but there’s no other way to test the marrow for cancer, so it’s a necessary thing.  Let me tell you how that works. The only way to get to the marrow is to get through the bone, of course. The site of choice is the pelvis and it’s closest to the skin in the small of the back.  If you reach behind you just above the waist line of your pants about 3” to either side of your spine, you’ll feel that special place where all the magic happens.

The nurse with that great combination of a smile and sympathetic look will introduce herself and bring in a cart full of goodies that would make Santa jealous. Then comes the doctor, replete with euphemisms and a packet covered in sterile white plastic with implements of torture that would make Torquemada jealous.  Remember, no one plans for the Spanish Inquisition, but they do schedule you for biopsies! This was my fourth…I know the drill, pun intended. The smiling doctor and the sympathetic smiling nurse then explain the procedure in a way that would sound no more unpleasant than a telemarketer calling during dinner (aka ‘pain in the ass’). Oh, the lies…they’re good at it with all the practice…and they smile all the while! I remember seeing a guy across the hall getting the briefing about a biopsy and I wanted to shout out to him, “It’s gonna hurt, get the drugs!” But the nurse closed the door. I never saw him again (insert frowny face here). Sure, it was because his procedure was done before mine and I was given some oral drugs for my chemo in my spinal cord, but we’re splitting hairs here!

Since this was my fourth biopsy, I asked the good doctor to spare me the euphemisms and move straight to me signing the release. I smiled and was polite about it of course.  I am a decent and polite guy, if not sporting a lively sense of humor with a touch of brashness at times, but hey, I know Santa Claus isn’t real and I know this is gonna hurt...bad.

Let the games begin!

So, I take my shoes off and hike my shorts down a bit and the good doctor starts to give me a sterilizing sponge bath on my back side. Isopropyl 2013? Open that puppy and let’s have a whiff of that lovely cork! Lovely bouquet with oaky undertones. Whine spectator gives it a 91! How many of you can say you’ve had that one, hmmm? It’s nothing special—it’s cold and you know you’ll have a questionable stain later. Yeah, it’s from the iodine, but people are just so suspicious! Alas, I digress.

Let the euphemisms flow effortlessly off the tongue!

“So, here’s that little bee sting” (translation – I’m giving you a shot to numb your back side so I can really hurt you). So, I feel the needle and the lidocaine expanding under my skin. My heart races a bit because I know what’s next.  At this point, she makes a small incision down to my pelvis, which I don’t really feel too much, but there’s some "pressure."  She tells me she’s numbing the bone, which I think is not something that is really possible, but it sounds good, doesn’t it? At this point, things take an ugly turn and I’m having flashbacks to Westerns where they give the cowboy with an imbedded bullet that needs to come out; and our unfortunate hero needs something to chew on.  In my case, I buried my face into the pillow and tried to grab on to something. For a lovely petite Asian gal, the doctor can wield an auger! I’ll be her forearms are shredded! Those white coats hide a lot, I’m sure. She takes a hand drill and pushes it into my pelvis and damn, it hurts.


For a petite lady, she sure could put some serious power behind that auger.  "And now, you'll feel some pressure."  Ya think? So, she drills through the pelvis and gets into the marrow. Where's that leather strap to chew on when you really need it?
Drill, baby, drill!

Once the drill has gone into the inside of the bone, she withdraws the bone core and draws out the marrow. Sucking that out also hurts like hell. She then withdraws the auger and puts a rather large Band-Aid on the wound and I’m done. She has me lay on my back for about half an hour and then I walk away. It takes all of about 15 minutes start to finish and I’m left with a dull throb.  My pain level spiked at a solid 6 or 7, but now as I walk out, it’s barely a 1…and I’m feeling a bit shaky. The nurse with the sympathetic look? Well, she's really looking the part now and the doctor has said, "sorry" about 8 times. She knows she hurt me.
You can see the doctor pulling out the aspirate marrow.  Lovely, huh?

I have a pretty high threshold of pain and I realize this is something I need to have done since AML is a disorder focusing on marrow and I of course, am getting a marrow transplant, but there has to be a way to alleviate the pain more than popping a couple of pills.  It’s not important that I’m awake for the procedure even. Alas I digress once again and I am not, by nature, a complainer or whiner and I don’t even take aspirin unless I have a helluva headache…but come on! I have a PICC line in my arm.  Would it hurt to put something to take the edge off in that little line?

Ah well, what doesn’t kill you makes you stronger, right? I guess I should be getting pretty strong.

Be well, stay strong, and much love to you all!
Today's music - Broken by Lifehouse
 


The broken clock is a comfort
It helps me sleep tonight
Maybe it can start tomorrow
From stealing all my time
And I am here still waiting
Though I still have my doubts
I am damaged at best
Like you've already figured out
I'm falling apart
I'm barley breathing
With a broken heart
That's still beating
In the pain
There is healing
In your name
I find meaning
So I'm holding on
I'm holding on
I'm holding on
I'm barely holding on to you
The broken locks were a warning
You got inside my head
I tried my best to be guarded
I'm an open book instead
And I still see your reflection
Inside of my eyes
That are looking for purpose
They're still looking for life
I'm falling apart
I'm barely breathing
With a broken heart
That's still beating
In the pain(In the pain)
Is there healing?
In your name(In your name)
I find meaning
So I'm holding on(I'm still holding)
I'm holding on(I'm still holding)
I'm holding on(I'm still holding)
I'm barely holding on to you
I'm hanging on another day
Just to see what you will throw my way
And I'm hanging on to the words you say
You said that I will be okay
Broken lights on the freeway
Left me here alone
I may have lost my way now
I haven't forgotten my way home
I'm falling apart
I'm barely breathing
With a broken heart
That's still beating
In the pain(In the pain)
There is healing
In your name(In your name)
I find meaning
So I'm holding on(I'm still holding)
I'm holding on(I'm still holding)
I'm holding on(I'm still holding)
I'm barely holding on to you
I'm holding on(I'm still holding)
I'm holding on(I'm still holding)
I'm holding on(I'm still holding)
I'm barely holding on to you