Embrace the Suck

Just when you think you have broken the code, they change the rules! After five inpatient stays at the VA Hospital in Salt Lake City, I thought I had things figured out. There are certainly parts of being hospitalized that don’t change, but the level of things for the bone marrow transplant here at the Seattle VA are ratcheted up a few notches with respect to keeping things über-sterile.  I’m now well into the process of killing my immune system off to make way for the new one, courtesy of “Hans,” my mystery donor. This is Spring Cleaning taken to a whole new level!

And to take Spring Fever to a whole new level, I settled into the new digs in the room at the end of the hall of the Bone Marrow Transplant Unit (MTU).  It has a lovely view and I don’t even have to walk to the window to see where I’d really rather be. My son and I had a quick intro to some rules of the road from the night nurse and he was off…I was not. I’ll be here for 3-4 weeks while I get my chemo and the life-saving transplant.

With that in mind, I set out to start learning the new slate of names of the medical and support staff that make up the MTU and to be sure, I want them to remember me. In the time prior to being admitted, I found a souvenir shop downtown Seattle with a metal sign that was intended for a bar that read name your poison. Being one to be literal when it suits me, I bought the sign, wrote Busulfan on the sign, and hung it on my door. Keeping things light!  I have a few other smaller things for the upcoming days. I’m intent on keeping people smiling so that when I feel lousy, they'll get me smiling again.

With my sign on the left and my new fancy dancing partner flashing her toxic chemical goodness for all to see. I'll bet you're *so* jealous! ;-)

Late in the day yesterday, I thought we might be getting close to one of those points where I’d need a little help smiling. PICC lines have been the point of infusion and blood draws for the past six months, the most recent of which was installed about 2½ months ago. Sometimes, these catheters migrate a little and can be difficult to draw blood from.  Such was the case yesterday, so after some contortions to see if the we could get a blood return and half a dozen unsuccessful sticks into my skin (peripherals), I ended up having to get a new line installed. While it’s not as painful as a biopsy, neither is it painless. Essentially, a narrow tube about 16” long is routed through a vein in my arm up to a junction just above my heart near the superior vena cava. To get to a vein big enough to support that catheter, the nurse has to use an ultrasound and get rather deep into my arm. It’s semi-surgical. I stay awake for the whole thing and get a local injection of Lidocaine. When I found out I’d be getting a new PICC line installed, I was less than happy. This is actually my fifth. One of the nurses who had been trying (in vein?!)  to draw blood earlier was watching the procedure and was actually rather quick to offer me something for pain. I’m tired of hurting, so I accepted. I actually have developed a rather high threshold of pain, but after this long, I’m ready to adopt better life through chemistry as my motto until this odyssey is over.

This is a PICC catheter going in and yes, that's me. The keyboard to your left goes to an ultrasound machine that helps the nurse/IV technician find the best vein. Inside the central line catheter, there is a little metallic piece that is picked up by the gray yoke/magnetometer on my chest so the exact location can be determined. After he positions the PICC, I get an X-Ray to confirm it is in the right place and they put a sterile dressing on the insertion sight. You can see the line going in my arm through a small incision.

Thankfully, the pain passes in a day or so and I get back to my normal jovial self. Even my favorite Brooklyn-born nurse told me I that I looked good today. I’m feeling good…for now. I know everything could change on a dime, so I’m doing what I can to enjoy the moment – carpe momentum! – or something like that anyway. By the time the late afternoon arrived, it was just the two nurses and me – from a pretty noisy day to a quiet ward. Suffice it to say, with no other inpatients, the nurses and I struck up a good conversation until sleep finally caught me.  I don’t know if it was the pre-meds, nerves, or something I ate, but I was back to my old hospital habit of staring at the ceiling in the wee hours of the morning.  Last night though, I was out cold.

I started chemo yesterday morning at 0-dark 15. It had to be started with near military precision so that blood levels could be measured at prescribed intervals. That tells the pharmacist how to adjust the dosage – something called pharmacokinetics. Say that 3 times fast! Since it’s impossible to reverse, I’m strapping in and holding on for the rough ride ahead. The transplant itself is less than a week away…hard to imagine that in six days, I’ll begin the process of coming alive.  So many parallels could be drawn at this point, but I’ll hold back until I actually have the new stem cells coursing through my veins.

Certainly, there will be much to think about as my body starts succumbing to the toxic chemical goodness and I take a nose dive back into frailty. There will be a lot as well to build up on the recovery side. I took a tour of the all new Salt Lake City Public Safety Building just before I left for Seattle and I saw the particular members of the structure that made it capable of withstanding an earthquake. Much like that, I know that my own body will resemble that in a way. It may appear similar on the outside, but perhaps a bit different than I can conceive; and I know the rebuilding will be good as well as necessary and it will belie the inner strength that comes from a visit with death. You can’t not be changed when you stare death in the face, but neither should one be cavalier about it. The stakes are just too high and they are permanent. It’s gonna hurt and it’s gonna suck, but the cost of life doesn’t have a price tag. Time to embrace the pain; time to embrace the suck (see note below)

Be well, stay strong, and much love to you all!

Music for the day from the Goo Goo Dolls - Better Days

And you ask me what I want this year
And I try to make this kind and clear
Just a chance that maybe we'll find better days
Cuz I don't need boxes wrapped in strings
And desire and love and empty things
Just a chance that maybe we'll find better days

So take these words
And sing out loud
Cuz everyone is forgiven now
Cuz tonight's the night the world begins again

And it's someplace simple where we could live
And something only you can give
And thats faith and trust and peace while we're alive
And the one poor child that saved this world
And there's 10 million more who probably could
If we all just stopped and said a prayer for them

So take these words
And sing out loud
Cuz everyone is forgiven now
Cuz tonight's the night the world begins again

I wish everyone was loved tonight
And somehow stop this endless fight
Just a chance that maybe we'll find better days

So take these words
And sing out loud
Cuz everyone is forgiven now
Cuz tonight's the night the world begins again
Cuz tonight's the night the world begins again

"Embrace the suck" is actually a military term meaning: the situation is bad, but deal with it.

 

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

 

Pain and Suffering

Ah, what a topic, huh? It’s a topic I can’t speak about with much authority as I have been extraordinarily healthy most of my life.  That’s not to say that I haven’t been injured or experienced my own ups and downs, but clearly I haven’t had to walk down the road of chronic pain or extended physical or emotional discomfort. For those who have issues with pain and suffering, I’m much more empathetic now than I used to be and I suspect that after my treatment is over, it’ll be all the more so. That’s not something I revel in, of course, but it’s something I know is part of healing.

At the risk of sounding cliché, pain is important. It’s something that preserves, warns, and protects us from something really serious. Those afflicted with Hanson’s Disease (leprosy) pray for the gift of pain while we in this country can rattle off the trade names of a couple of dozen pain relievers without much effort. While there are certainly times a pain reliever is appropriate, more often than not, we mask problems with a pill when we should be paying attention to what the pain is telling us. Pain is good.

I think it’s important to embrace the pain. Now, before you label me as masochistic, understand that what I’m saying is that what I mean by embracing the pain has more to do with understanding what your body is telling you may be wrong rather than taking pleasure in hurting. Obviously, there’s a distinct difference and while I don’t enjoy pain and suffering at face value, going through these experiences have brought me closer to others and have transformed me into someone different, better I hope. Again, I don’t look forward to being miserable and I won’t allow these experiences to define who I am, I do see these bouts with hardship as opportunities. Being bitter gets you nowhere except perhaps a group of compadres who are equally miserable with whom you have nothing in common except some sour grapes that you can share with each other. Talk about a healthy relationship!

I have been giving some thought to this topic more because I know that even though the fun-ness I’m experiencing with the chemo currently isn’t at all pleasant, the transplant process will make this all look like a cake walk. In fact, when I was chatting with another vet who had been through the marrow transplant process. He said he had basically forgotten about two months of his treatment because he was medicated through much of it. He has a different condition and other complications, but he was pretty direct with me that it was rough and that even a couple of vets there didn’t survive the transplant process because they wouldn’t get out of bed. They just died. It was more sobering to hear from him about the road ahead of me than from the doctor. I did ask my doctor about this and she did acknowledge that medication was there for a reason. Rather telling, huh? On the other hand, she was direct as well in saying that your body knows when it’s ready and suddenly you feel good again. After having had a couple of blood transfusions during my first round of chemo, I totally get that. It was amazing what the difference a little bag of blood could do.

Having finished dose 6 of 6 of this course of chemo, I’m still feeling really good and full of energy. My appetite has been really strong and with a little help from the Mr. Coffee down the hall, I’m keeping regular and alert. Although there is coffee served at every meal I get, it’s really weak and I’m amazed at what an impact regular strength coffee is doing! I asked my mom bring in some nice coffee and a box of Girl Scout cookies from my apartment for the nurse’s station to show my appreciation.  We gotta take care of those who take care of us, right?  They are my superheroes after all!

My hem/onc doctor is rotating back to the Huntsman Cancer Institute and I’ll be meeting a new doc who is rotating to the VA tomorrow, so I’ll be able to get a better feel for when I can expect to be discharged. I’ll be getting my third of four stab-in-the-back (intrathecal) chemo treatments tomorrow.  I’m pleased that these haven’t been nearly as painful or uncomfortable as they sounded and they have actually taken care of the one symptom for the leukemia no one saw as such: double vision. Things are happening.

The weather is getting better and although I do have a window, my view only serves to make me want to get outside all the more.  Thankfully, I’ve been getting out of doors long enough to soak in some much needed sunshine and fresh air outside of the four walls of this hospital room.  Spring Fever is much more intense than I ever remember. No surprise there, I’m sure, but that’s hardly real pain and suffering, is it?

There’s no doubt I’ll have more to say on this subject as I progress through my treatment and I experience some really unpleasant things during the transplant procedure, but I bring it up now again because it’s something that is central to our human experience, something we have to learn to not just accept or tolerate, but embrace as natural and necessary and it’s not an easy thing to say when all you want to be is comfortably numb. For the time, I endeavor to be strong and optimistic and continue to thank you all for being my support. Time for my meds ;-)

Music of the day – I Get Knocked Down (But I Get Up Again) by Chumbawamba.

     I get knocked down
     But I get up again
     You're never going to keep me down

Seems appropriate, don’t you think?

Be well, stay strong, and much love to you all!