Sunday, January 29, 2012

M.I.A.?

Missing In Action? Not really.   I'm just laboring alongside my husband as he battles in the trenches of a new stem cell transplant. I've recently written an update or two on his blog if you want to follow our journey. While he's doing great, there's a lot to deal with at the moment. He's named his blog, "Thrilled to Death" and there's a lot of inspiration to be drawn from it! Be sure to check it out!

Not just hanging on, but THRILLED TO DEATH!

Monday, November 7, 2011

An Update on Paul

I'm going to interrupt my usual quirky observations with some straight-forward ones of Paul's progress over the weekend as he is too weak to blog himself at the moment.

He developed a temperature of 102 on Friday night (11.4.11) and we took him to the emergency room at Vanderbilt. That must be one of the busiest emergency rooms in America! Those people work very hard but it seemed to me they could use a few more people. And a few more rooms.

Because they were full (I've never seen an emergency room that full!) Paul waited in a secluded hall -he is still Neutropenic from his last round of Chemo two weeks ago. He has absolutely NO immune system. His white blood count is at 0.1 so he sat in a hall, away from people, until a bed opened up for him. About an hour. Once he was in a room they started him on antibiotics. His fever did seem to come down briefly that first night but overall, he maintained a temperature between 101-103 the entire weekend. His fever broke late Sunday afternoon.

Once in ER, we waited 15 hours for a regular hospital room to open up for him. During that time he slept as much as possible. He was feverish, chilled, nauseous, and had a headache. They were able to alleviate the nausea with meds but the rest stayed with him for a good while though they tried several things in an effort to make him more comfortable.



The Oncology floor where Leukemia patients usually go was full so he was given a room on another floor. One for Oncology overflow and general medicine. We got there Saturday afternoon and they continued with regular doses of antibiotics. His fever continued to be high.

During this time, lab results came back from some blood work done earlier in the week when they removed his PICC-line (it was looking VERY red around the site.) It was confirmed that he had a Staph infection. Probably a result of the PICC site. (Not unusual)

This allowed them to better target which antibiotics to use. During this time Paul remained very weak, nauseous, and feverish. His blood pressure was also low. He ate very little, if anything that day. Also somewhere in here they gave him some Platelets as they were too low.

In the middle of the night (Saturday/Sunday, around 3 AM,) Paul got up to use the bathroom. He must have gotten up too quickly. He fell as a result of momentarily blacking out. His IV pole also toppled with him, making a very loud noise. I awoke just in time to see him fall and I gave what was probably a good shout. Staff were immediately at the door. He regained consciousness almost immediately but was very dazed. As he was right in front of the door, I was unable to open the door to the large number of hospital staff on the other side until I helped Paul up. We (Paul and I) did manage to get him up and the staff in fairly quickly, I think. It's all a bit surreal now.

Also, now that we know everything is ok, I'll tell you about this part. As I helped him up I saw a pool of blood where his head had been. I refused to react to that at that moment, and kept getting him up so we could get the staff in the door. The blood turned out to be from a cracked IV line, but for the moment it greatly augmented the alarming state of things for me as you can imagine.

He did hit his head during that fall but showed no signs of injury. They did a CAT scan just to be sure. They also put him in "bed jail." The beds are wired with an alarm that, when activated, will sound every time the person gets out of bed. This requires an attendant to be there at all times when the patient is getting up. He stayed on "bed jail" - my term, obviously - for about 24 hours. They also switched his "booties" - non-slip socks they give-from blue to yellow. Apparently yellow have thicker and larger amounts of non-skid material on them. As many of us already think of him as Tom Bombadil (who had yellow boots), I particularly enjoy this added feature. Gives me something to smile about. He's so cute!


OK. In all fairness I should show you the first picture I took of him. It actually encapsulates his overall essence these past few days better. His radiant smile has only just broken through this morning. The picture with him smiling came after I said, well, I don't know what I said but it caused him to smile real big.


Sunday afternoon his fever finally broke and has remained normal since. That was a very welcomed milestone.

Sunday evening, I'm sorry to say, brought another eventful night. Earlier in the day he received an order for blood transfusions and some platelets. Transfusions are a very normal thing for people who have Chemo. Transfusions sustain them until their body recovers and produces its own blood cells.

His blood transfusions began about 5:30 p.m. About half way through his second bag of blood (around 9 PM) Paul experienced what he described as a heavy weight on his chest. He was also nauseated and his forehead broke out in a sweat. There was also an immediate need for the restroom facility with a sudden onslaught of diarrhea. The staff paused the blood transfusion in case he was having a reaction and sent for a cardiologist. There was an EKG taken as well as blood drawn for labs.

EKG was normal. After a good amount of examination, nothing seemed out of the ordinary and Paul settled in for bed.

Around 3 AM a resident doctor came up to talk to us. There were heart stress enzymes in his blood. This is indicative of a heart attack. Even mild. There were several tests run the rest of the night.

This morning the heads of Cardiology came to see Paul. They furthered the questioning and examinations. The head of the department said that, given the events, blood work, and description of last night, he would have to conclude Paul did experience a mild heart attack. He did not think this was related to the blood transfusion. He suggested the timing was a coincidence. They are proceeding with what testing they can today.

As Paul's platelets are low, they cannot do exploratory anything that requires threading tubing inside Paul's arteries. Our course of action is to continue to give blood and platelet transfusions and closely monitor Paul externally.

There are many factors to consider. His low blood pressure. Low blood volume. His last Chemo has a side effect of damaging the heart. But Paul seems completely fine. He wouldn't even describe the experience as painful in any way. If the nurse administering the blood transfusion hadn't told him to report anything that wasn't normal, he wouldn't have even mentioned it(!) as it wasn't painful.

So that brings us to this morning. "Joy comes in the morning!"

When Paul awoke this morning (after not much sleep) he was NOTICEABLY more his usual self!!! More alert. Smiles even. Willing to try his breakfast. He clearly felt better. He asked if he could walk a bit so we walked the floor loop a few times. He's back to checking and answering texts and emails a little bit. He's still weak but he's just so much better today. His temperature continues to be normal. I am relieved. (And happy for him!)

Thank you so much to all who have continually prayed for him. As you can see, his body is really working hard for him! And not without consequence.

We love you all. Thank you for being on this trek with us. I'll leave you with Paul's view this morning and his wonderful comment, "Those hills are beautiful!" I think a lot of people would have seen the cement buildings and limited view. Paul looks past all that and finds the beauty. Never have I met such a man who immediately finds God's beauty, presence, desire for each moment!! Even after the heart stuff yesterday his comment was, "I'm so glad God let this happen today instead of yesterday!"


PS - Just so you know, he'll probably cry when he reads this update. He's VERY tender right now. Tears up whenever I bring something sweet, pleasant, loving to his notice. Sunday morning I casually mentioned, "Everybody's probably gathering today. That means a lot of prayer will go up for you." And I smiled. And he teared up. Did I mention how much I love this amazing man? As I tear up...

Sunday, October 23, 2011

No Soccer, Paul...NO!


Paul has met his match. Granted, it's taken a whole team but they've managed to curtail him...

He asked the Vanderbilt staff this morning if they would let him go to his son's soccer game this afternoon, explaining that the IV pole would probably retract and fit in the car. And wouldn't ya know, they said no.

He first mentioned his intention to ask to his morning nurse whose name I won't mention so as not to incriminate her. She was very sympathetic towards Paul's plight and mentioned that his best bet for getting a yes would be Dr Greer as he has a very big heart.

Emboldened by this lovely tidbit, Paul was armed and dangerous by the time Dr Greer's team arrived for morning rounds. You see, Paul also had a trump card up his PICC-lined sleeve. He'd already seen his lab results online and noticed his Neutrophil counts (the cells that fight infection) were also high. He was ready with his case.

To Dr Greer's credit, he handled being put on the spot in front of several doctors in training with all the fineness and precision one would expect from a well experienced doctor. He in no way hemmed or hawed. Nor did he even evade an answer...he simply passed the buck...

Actually, he supported Paul's idea as to how it would be possible by explaining that they can, in fact, do this type of Chemo on an outpatient basis. He did caution as to liabilities for he and the hospital but then said they would not want to withhold his going based on that alone. He finished his sympathetic explanation with a, "But we'll have to get an OK from the nurses here. And they're probably going to squawk!"

Paul replied that he had actually already mentioned it to one of the nurses. Dr Greer asked what they said. Paul told him, "To ask Dr Greer as he's the most likely to say yes!" The room filled with laughter and Dr Greer went right from our room to the nurses main desk (next to our room) to plead our cause.

We could hear him delivering our request to Blanche, the head nurse, whom we really like a lot, and Paul actually unplugged his IV pole and was heading out the door to plead his own case when Blanche met him at the door with an ever so lovely smile and a, "I'm sorry but we can't let you do that."

Paul, grinning ear to ear, "Not even if I'm careful?"

Blanche, grinning just as much, "How do you think accidents happen? They're accidents!"

Paul, "I'll stand back from the scrimmage line and have my brother block any shots that come my direction!"

At that point, Blanche looked over at me and quipped, "He's incorrigible!" (or something like that) to which Paul responded,

"So that's a no?"

"NO!" Blanche obligingly reproved.

At this point I interjected, "Hold on! I've got to get a picture of you two!" Hence the picture at the start of this blog. The picture is obviously staged because Blanche isn't smiling and Blanche is ALWAYS smiling!

She said she told Dr Greer, "You know we can't approve that!" Dr Greer responded with, "I'm the good cop. You're the bad cop!"

So there you have it, Folks. An inside look at the masterful handling of one unorthodox zealot by obvious professionals who clearly have his best interests in mind even when he doesn't!

Here's a picture I took afterwards. Though it looks digitally altered, as if Paul's head was randomly inserted, it's not. He's on a yoga mat on the floor, nursing sciatica issues. Oh, did I mention he's got sciatica issues today and probably needs to rest as much as possible?

Saturday, October 22, 2011

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!