The Blood/Brain Barrier...

So, we're back at Vanderbilt for Paul's 3rd (and hopefully last) round of Chemo before his stem cell transplant.

This Chemo is targeting his central nervous system as they found blasts (baby cancer cells which I refer to as blasted blasts!) in the spinal fluid. Apparently not all Chemotherapy can cross the blood/brain barrier but this stuff will. So he's getting 2 potent bags every day for 6 days. Here's his blog which gives the details and how he's doing with all of this: Thrilled to Death.

It will take one week to administer the Chemo, one week for it to brew inside, killing those blasted blasts, then another week or two for his immune system to come back up to normal levels.

I'm spending evenings/nights there with him at the hospital and then I go over to the apartment during the day to help the kids with their schooling and visit with whichever lady is there from our village.

I can honestly say at this time that Life is Good!

So, I stay in the mornings until after the doctors make their rounds. I love that we get to see and hear from the team working on Paul's case each and every morning. Our current head doctor (I'm sure there's a more impressive title to use there but I'm not sure what it is) is Dr Greer.

He's the older gentleman with the snazzy tie, casually leaning on the end of the bed. One feels as though one (or one's husband) is in good hands with Dr Greer.

But I confess to experiencing some brain/blood barriers myself with these visits.


If you had distinguished people coming to your room each morning, what would you do? Well, I would fold up the blankets, tidy up the place, fix my hair, and hold off going to the bathroom so as not to miss their visit. (I have to walk a good distance to use the restroom. The one in our room is reserved for Paul while he's receiving Chemo.)

This morning Dr Greer and his team were a bit later than usual...

Now don't panic. I'm not going to go through my Depends! story again.

As we waited for Dr Greer's team to arrive, my brain started finding myriads of minuscule details to attend to. Here's what it looked like:

Brain: "Oh! Those blankets are folded really sloppy!" Arms reached out and quickly refolded blankets.

Brain: "Ugh! Are those my shoes I smell? I REALLY need to clean those!" Arms dug into bag quickly-before the doctors arrived- for Lysol to disinfect the air (Doesn't everyone carry travel-size Lysol in their bag?!)

Brain: "Is this shirt too wrinkled?" Body quickly moved to mirror to inspect the shirt. While there, fingers fluffed hair. Hair then proceeded to fall back into the exact place it was before the fluffing. And on and on it went. Brain busy. Blood seemingly barred from brain.

Then Paul got up and announced that he was going to the exercise bike. He suggested the doctors could look for him on the exercise bike in the hall if they came before he returned.

Brain finally stopped fidgeting. Besides, everything was ready. We just needed the doctors to arrive.

A few minutes later - and I mean minutes - the doctor and his entourage were at our door! (Of course!)

Sigh. Brain thoughts: "They're going to go see him at the exercise bike. I've straightened up and cleaned up and Lysol-ed up for nothing. Oh well. The polite thing would be to go ahead and tell them where he is."

I opened the door and found myself face to face with Dr Greer. I sweetly told him where he could find Paul. He gazed back in his polite way as I talked and agreeably planned to go find Paul on the exercise bike.

I pulled my head back inside the room and THEN - only then - remembered that I NEVER BRUSHED MY TEETH this morning! Talk about a blood/brain barrier!

I'm quite certain I delivered that sweet face to face message to that distinguished gentleman with my most awful morning dragon breath! ARRRGH! And to his credit he never flinched even a little. Not even an eyelid flicker!

So, that's life at Vanderbilt at this time. I'll leave you with this awesome picture of PiccMan minus the cape! I may be failing at being awesome, but I assure you he is not!

The Handsome Doctors (Smart Too!)

So I've tried to be a good wife through all of this. On one particular evening I was pre-reading one of Paul's blog posts. He was talking about our doctors and he went so far as to comment on their good looks. As I don't consider this his area of expertise(!) I chimed in with a small protest on an inaccuracy that needed adjusting. You see he commented that one was less good-looking than another. As both of these doctors are good-looking I told him he should say as much and perhaps differentiate by stating that one is dark while the other is blond. To my absolute amazement (and consternation), Paul laughed outloud VERY loudly and reassured me this was a guy thing. Sigh. He left it as is and posted the blog!

I must confess to an IMMENSE amount of satisfaction the next morning when I was validated, albeit unknowingly, by Susan, our nurse for that day. In talking with Paul about something, Dr Lammers' name came up and she clarified which doctor they were speaking of by asking, "You mean the handsome one?" (He was deemed less handsome in Paul's blog.) Paul and I burst out laughing. As she had not read his blog yet, she had no idea she was authenticating my argument. Thank you, Susan!

I've got one picture with our current four doctors. Unfortunately this picture does not present Dr Strickland at his best so I will follow that one with a great one I got of him next to Dr Lammers.

Dr Lammers, Doc Halliday, Dr Paul, and Dr Strickland

Dr Strickland and Dr Lammers

Dr Strickland is an Associate Professor of Medicine here at Vanderbilt. When one googles Dr Strickland (as of course I did) one quickly finds that he is indeed very accomplished. He oversees many of the clinical trials here at Vanderbilt for the Leukemia ward and I've heard it stated that he is the best(!) when it comes to research. As Paul's Leukemia is quite unique - meaning there's very little if any data to turn to - it brings a lot of peace of mind knowing an accomplished fact finder and problem solver is heading up his care.

Another VERY delightful tidbit on Dr Strickland's accomplishments: his initial 4 yr degree (his BS) is in.... ready for this?.... ZOOLOGY!!!!! Now is that great info for my LOL blog or what?! And obviously the PERFECT doctor for Paul! Clearly he has the broad data bank one would need to diagnose Paul and all his, er, peculiarities! For the record, Dr Strickland did go on to obtain an M.S.in Biomedical Sciences. He completed a Master of Science in Clinical Investigation at Vanderbilt in 2009. Clearly we are in good hands. Handsome and smart too! (The whole "handsome" thing came up from a conversation Paul was having with him, looking for info to use in analogies. Dr Strickland came up with a great analogy on the spot involving teenagers and Paul asked permission to use this. Dr Strickland - who is GREAT with people - jokingly said something about giving credit to the handsome doctor -- then cautioned not to confuse him with Dr Lammers...and so the parlay began...)

One last tidbit on Dr Strickland and then I'll move on. He's also published. One article in particular caught my attention and I in fact had a very enjoyable read on, "Hiccups: Underappreciated and Underrecognized" co-authored by Dr Strickland and an associate. While I had several quips and fun points to make from this paper - hey, he even put in a good word for acupuncture! I'm going to refrain - perhaps save that for another blog - in order to touch on the other docs just a bit.

So Dr Lammers has to be next.

He did the actual biopsy on Paul yesterday. I believe he's in his last year of studies and he's actually moving to another floor as of Monday. They move around while learning stuff. (Very technical clarification there, I know.) So, he's tall - wears size 8 gloves -- Amma and Ariel wear size 6, Rushie wears size 7 for reference -- and seems quiet. He did an awesome job on Paul's biopsy (my experienced opinion there - after all, I'd already watched, er, ONE.) He at first encountered the same problem as the doctor who did Paul's initial one in Corinth several weeks ago. The problem being NO LIQUID MARROW. I have no idea what this signifies, I just know they apparently get liquid first then an actual bone specimen and Paul didn't have liquid. Dr Lammers then proceeded, as did the initial doctor several weeks ago, to procure a bone specimen. Now that looked very, er, interesting. You see, Dr Lammers, as I've said, is quite tall and to see this large man bending way over, using all his body weight to, um, I guess dig through (very appropriate medical term, I know) Paul's very dense hip bone - as if one were going after a particularly stubborn cork on a desired bottle of wine, continually turning and turning the cork screw - was an arresting site for this wife to be sure. We were able to conclude that those years of Paul's pounding the pavement - ie jogging - weren't in vain. Paul has very dense bones. Obtaining a piece of Paul's hipbone required a good bit of effort on the doctor's part. But he was successful in the end. The technician standing by gave a small exclamation of approval causing me to conclude he was, indeed, very good at what he did. Here's his handiwork for those of you experienced with this kind of thing. You can see if you agree with the technician:

For you non-techies, the red stuff is the bone

Now what happened next sets Dr Lammers - and Dr Strickland - apart from other doctors, I'm sure.

First, the gloves....

During the bone-procuring procedure Dr Strickland was standing by, overseeing. When there was no liquid marrow he asked a few seemingly casual questions and then announced that he was going to go get his gloves. As way of explanation he reassured us all that this is a little trick he uses. He never actually has to use his gloves, somehow just the suggestion gets things happening in a direction he'd like them to go. Meanwhile, Dr Lammers continued to work on Paul and as Dr Strickland took his stand there with his magical gloves on, Dr Lammers drew up what looked to me like blood but was apparently the coveted liquid bone marrow-and lots of it! (Did he just go deeper in the same spot? Did he somehow move over to a different place in that marrow area? And most importantly, how can I get a pair of those magical gloves? These are questions I'll have to ask them tomorrow morning - the team of doctors comes by EVERY morning - even on weekends - so we get plenty of time to ask our questions and stay in touch with what they're thinking/working on.)

They make a great team! Clean-up and all!

Just before the biopsy began Dr Lammers asked if this was going to be televised live. They've grown used to the murmurs about our blogs. So, in answer to your question, Dr Lammer: No. It wasn't televised live. It was spelled out in a play-by-play afterwards! :-)

Now I know this blog is getting long but I simply cannot write a blog on our doctors and not include Doc Halliday! Cowboy boots and all. (Sorry, no picture of the boots at this time but I'll work on that...)

Doc Halliday is from Texas but you'd never know from the way he talks. No accent that I can tell. His one giveaway is the cowboy boots he wears when doing his rounds. (Confessions: I've never actually noticed the boots myself but a great little nurse clued me in on that nice little tidbit.)

He unknowingly endeared himself to us the very first time we met with him. It was our admissions day. He accompanied another doctor (Dr Lehman who sadly moved on.) It was Dr Lehman who asked all the questions and seemed to be in charge. He then left and it was up to Doc Halliday to close up our meeting. Paul asked, "Do y'all just have until tomorrow afternoon to decide on what Chemo regimen to give me?" Doc Halliday responded with, "Well if by "Y'all" you mean Dr Strickland and Dr Greer then Yes, I think so." He went on to place himself at the bottom of the pay-grade scale. It was very winsome! He's the guy most often seen here on our ward and seems to be the first responder when a doctor is needed. He's also the one who checks on Paul first thing each morning - except yesterday morning - I overheard Dr Strickland's quip, "So Doc Halliday is on holiday?"

One morning Doc Halliday found Paul on the exercise bike (again) and started smiling from down the hall. "Let me guess," he called, "You feel great!" See why we like him?

This morning he told Paul that he forwarded Paul's blog to his father who is also a doctor. He asked his dad, "Have you ever had a patient write such nice things about you?" And his dad responded with, "No. Someone did once make a comment about me on the internet, "Odd but good doctor!" That gave us a good laugh.

As for Dr Paul, well - he's new. And he's quiet - though I'll confess to seeing him chatting away at the desk - and he seems to stay busy. And I like his name! So he's a keeper as well.

Sigh. Sad as it may be, I guess it's time to conclude my circumlocution (fancy word I just found for ramblings) on the very wonderful, wonderful doctors here at Vanderbilt who are working their tails off to save Paul's life. And I'm so grateful! They gave us the much hoped and prayed for news this morning that his biopsy looks clean. Continue to remember them and pray for them as they search for a bone marrow match and continue to see him through to a cure!!!!

Reporting live from room 11010 (and grateful to be here!)... Godspeed and Good Night!

Day 13 "It's Been a Good Day"

I'm going to interrupt my usual quirky series to give you a more straightforward update on Paul since he isn't up to it today.

This is day 13 and as best as I can tell he's handled Day 13 really awesome. You see, we've been told that a Leukemia patient receives Chemo for 7 days and the Chemo continues to work it's, er, magic for another week. On Day 14 everything is at its lowest. Days 13-14 are also generally the toughest days on the Leukemia patient. So that's where Paul is at. And in light of this I have to say that he is doing amazingly well! At one point today he quoted that amazing 13th Warrior, "It's been a good day."

His day started really early with a transfusion of Platelets. Later in the morning he received two pints of blood. Those things all make him feel better.

He had a lot of trouble this morning with what I would have to describe as violent chills. He got out of bed as little as possible so as to avoid those shiverings. He stayed wrapped up in blankets and a shawl most of the day.

At one point he asked me to crawl into bed with him. We huddled (Did y'all see March of the Penguins?) to keep him warm. That was a very sweet time for me. We stayed cuddled while he slept for a good while.

The chemo kills all rapidly reproducing cells and that includes saliva. As a result he's got a couple of mouth sores (a common side effect) he's working around. There's a magic formula he can take called "Miracle Mouthwash" and it numbs those sores immediately. Paul has a routine worked out now and he generally applies that just before eating. Today, however, he stuck with a baking soda/salt rinse they also gave him and he didn't eat much in the way of solids. That's in part due to mouth sores, in part in an effort to cut down on eliminations (those 'rhoids are still there), and lastly in part to the beginnings of nausea.

So up to this point he has mouth sores, chills, some nausea, and hemorrhoid issues. He's dealing with stuff at the top, in the middle, and the bottom. He's managed all of this amazingly well. He takes a pain pill when he needs to go to the bathroom to help with that and somehow there was Benadryl added on this morning. That makes him very groggy so he dozed on and off pretty much the entire day.

Then this afternoon his temperature started going up. When it got to 103 they started him on an IV with antibiotics. They drew some blood to check for infection. His PICC site is just a little red and could be a possible cause of the fever.

Louise, our wonderful wonderful nurse today also said that Neutropenic fevers are not uncommon. (Neutropenic has to do with having very little or no little something or anothers in your blood)
His temperature kept going up and down but never exceeded 103. It mostly stayed around 101 and this evening (they also gave him some Tylenol) it was back to 98.something. Through all this Paul mostly laid quietly in bed. He's letting things do what they need to do. And every once in a while his radiant smile pokes through.

Tomorrow is the big day! Tomorrow they do a bone marrow biopsy to see if they killed all the Leukemia (and other) cells. If not, he will have to do another round of Chemo. This round was a 7/3 - 7 days of one thing combined with 3 days of another. They would do a 5/3 (I think) if they were unable to get all the cells this last time. Obviously we are hoping to get an "all clear" result. I know many are praying.

If it is all clear then Paul will stay here for 4-6 weeks while his body rebuilds using only healthy cells. After that he should be released for a while. There will be two "consolidation" sessions which are short Chemo blasts to double check that they didn't miss anything. I'm not sure how long he'll be admitted for those. Then after that they will begin the discussions on bone marrow transplant.

(I hope I'm getting all this info correct. Describing scenes rather than imparting technical info are much more my forte.)

We have a little news on finding a donor. They checked the national donor bank and came up with three potential matches. They are contacting them now to begin the screening process. When they look for matches they do tests on six things to find a match. I have no idea what those six things are but I know that ethnic background plays a big part. His sister was a 4/6 match. They said that it is possible to use that though they would prefer a 6/6. The doctor said that they are also going to check the international donor bank and he's hoping they may come up with something as Paul is half Portuguese. That's pretty much all we know on that at this point. You can pray with Paul for that process in finding a donor (though Paul isn't really praying in this picture, he's trying to stay warm)

And I'll leave you with this sneak preview picture which will be included in my next post entitled, "The Handsome Doctors (Smart too!)" I've got some great stuff for that post! Stay Tuned!

Leukemia - It's got Perks!

So who would have thought there'd be perks to having Leukemia?!

We (Paul and I) ordered online "business" cards (the free ones) for each of us since we are continually giving out blog addresses to people here. Having a little card to hand out will be so much easier than spelling out blog addresses all the time. Paul's card has "Thrilled to Death" in large print. Mine is more demure with a "LOL"...

So here's the perk - The "I have Leukemia" card: Paul got a sales call last night from the company he ordered with. And the girl was as slick as a baby's runny nose (sorry - I claim no skill for creating great similes) and she was ending her sales pitch with a, "Does that work for you?" - which included a monthly subscription to something or another. Paul responded with, "So if I don't cancel you're going to charge me $29.99 a month?!" She started to reiterate the advantages to this unsolicited product when Paul interrupted her:

"Well, here, let me tell you where I'm at. I'm at Vanderbilt hospital and I'm being treated for Acute Leukemia. (At this point the sales girl began to sputter a bit) I'm getting treated with Chemo right now and can probably expect to be here for the next 4-6 weeks..." Needless to say, the conversation was quickly and efficiently brought to an end with no further suggestions from the sales girl. It definitely made me smile. I did feel for the girl. I'm sure she's just doing her job. But you've got to admit that it's GREAT to get out of those slippery conversations by having the sales person in a hurry to end the call!

Oh, here's another GREAT perk for the patients here at 11 North (Vanderbilt lingo for Leukemia ward, located on 11th floor)- check out the stylin' no-slip yellow booties:

As many of you have probably heard, we have been given an apartment for FREE for the duration of this Leukemia journey here in Nashville. Our children are moving in already - the younger ones, the boys will come up on weekends as they work full time. Thank goodness for our Village! The children can relocate easily and there are people to take care of them. Paul and I can join them when he's released in 4-6 weeks while we prepare/wait for his bone marrow transplant. And then our family can continue to stay the duration of the transplant and recovery time. Is that incredible or what?! We are so so grateful. And it's a very nice apartment! The kids love the pool of course.

This is completely funded by the American Cancer Society (yes, those people referred to in Paul's blog...life is so full of ironies!)

Let me take this moment to plug all these things I myself have not paid much attention to until now. Cancer research organizations -- they have helped us all along the way here as you can see. Please consider donating as we could never repay what we've been given by others who've donated before us. Bone marrow donor - EVERYONE SHOULD DO THIS!!! This is a free and simple process. You go to your doctor or local health department and they swab the saliva in your cheek. THAT's IT! From there your info goes into a central bone marrow bank that doctors then search when looking for a bone marrow donor. The donor bank is relatively small compared to the number of humans in existence and I believe that's in part to a lack of awareness. Hence this paragraph! A very small amount of donors are called upon to actually donate. Only if you're a match for someone and the process is fairly simple. It seems tragic that someone would die simply because others didn't know they could save them at no risk to themselves! Spread the word about this! Lastly, give blood! Paul would already be dead but others have given their blood.

Paul continues to do well though he did experience some side effects yesterday. As they involve hemorrhoids and stuff I'll let you read his, er, cleaned up version.

In the midst of yesterday he was able to figure out that getting up and moving around helps everything. I enjoyed watching him deactivate his recently learned habits. He got off his IV yesterday (milestone!) but the habit of grabbing for it before walking remained. More than once yesterday I watched him grab at mid-air.

Then this morning as the nurse was checking in with him at the start of her shift (Susan - who has been attending the past couple of days so is familiar with where he's at) Paul told her that he figured out one of the problems from yesterday. He realized he was having trouble burping and when he does burp it completely relieves the symptoms. He suggested the need to be put on someone's shoulder from time to time and patted on the back. Susan responded with a dry, "So you want us to burp you every day?" I laughed. Her tone was perfect. She continued with a, "I'm sorry but that's outside my field of practice!"

I'll leave you with this picture taken this morning of Paul and Susan. As his shirt says (a lovely gift from little Katie - thank you!) IT'S ALL GOOD!