Friday, January 15, 2010

It Gets Worse Before It Gets Better

I know the last few entries have left lots of people with feelings of positivity and optimism; and lets hope (at least by the end of this one), that it stays that way. Here we go:

You guys, yesterday was quite possibly one of the most frightening days yet.

I got a phone call really early in the morning (around 5ish) that if I wanted to interact with Mark and talk to him, I'd better get to the hospital asap because they were going to intubate him. I was confused just a little because while yes he had been moved to the ICU, I had left him the night before breathing on a B-PAP machine. Yes, it was still difficult, but he was working through it. I think I somehow told myself that the intubation might not happen at all, and that the B-PAP might be fine.

(Oxygen explanation: As you all have been informed on the blog, Mark's been have really horrible difficulty breathing. The cancer has infiltrated his lungs (no it doesn't mean he also has lung cancer, it's an expected thing with his type of Leukemia), thus making it extremely difficult to breathe. At first he was on the cannula oxygen, which eventually was just not helping his pulse ox at all, then they moved him to a face mask oxygen with 2 little vents on the side so he would still be breathing in ambient air and not straight up oxygen. Again, after about a day or so on this type of oxygen, it wasn't cutting the pulse ox mustard, so he was moved to a face mask without vents and a bag of pure oxygen on the inside, no more ambient air. This helped...for about half a day, and then that night (about 2 nights ago), it wasn't working still, so they moved him to a B-PAP machine, (this is the same type of machine that blows a hard stream of air right into the mouth to get oxygen right into his lungs. now THIS one actually was great and his pulse ox jumped up and stayed steady (you want it around the mid 90's, and he was hovering around 93-96 most of the night). Then, this is where the call came into me at 5am)

I get into the car immediately and drive to the hospital; where at the front of the ICU, (where they had been letting me just walk right in), they stopped me at the "family waiting area" and said they were still working on him.

"What do you mean working on him?"

"The doctors will be out here in a moment to speak with you."

"What happened?"

"Just hang on one moment ma'am, and we'll send his team out here to speak with you."

I sit down and my brain is just blank and I'm numb and holding on by like a teeny tiny thread. Finally, (and thankfully) Dino and Jimmy walk in right at that moment and immediately calm me down. FINALLY doc comes out and explains to us that around 430am, Mark tried to get out of bed to go pee, in doing so he removed his facemask from the B-PAP machine and his pulse ox dropped dangerously low and when they got him back into bed and tried to raise it up, it wasn't happening. His lungs just would not expand anymore and they had to begin an intubation. They sedated him, and started it, but because Mark is Mark, the amount of sedation they gave him wasn't enough and he came out of it, fought against the team and removed the tube from his throat. It then takes a team of about six people (though as his brother Matt said "yeah but how many of them were women?" lol. Note to Matt: you realize Mark's gonna get you back for that one right?). Anyway, they hold him down, enough to give him a third sedation and take him under enough to intubate him, but he definitely fought them. His heart rate lowered so very low that for under 1 minute he coded (meaning his heart did stop), but they got him back with a shot of epinepherine. Finally the team was able to successfully intubate him, and get him stable.

When I say that they were able to get him stable, that means for the first time in over a week, Mark's pulse ox AND his heart rate were both in a nice, comfortable (and healthy) range of between about 94-99. Awesome. They also put him on a gas called Nitric Oxide. This is a gas that is mixed in with the 100% oxygen that they're administering; it induces vasodilation, which means that it is helping the inner lining of his blood vessels to expand, thus telling his other smooth muscles to relax and creating much better blood flow in his lungs. Nitric Oxide is not something that they want him on for a long time because it is actually a toxic gas; but since he was put on it, they've stepped him down a notch. At the beginning of this he was on 20, now they've stepped him down to 10. His heart rate has gone up and has gotten a little irregular, but his pulse ox remains at a solid 95.

It's really scary to see the man you love like this. Upon first glance his current state shocks you; as he's totally out and hooked up to more machines than you can even comprehend at first glance. However, I will say this: he's more rested now than he was before on all of the other types of oxygen he was on throughout this past week. He was working so very hard to breathe and he was exhausting himself. The state he's in now is making it so he gets rest, he relaxes, and he gets a break from working so damn hard to take a full, satisfactory, healthy breath.

Here's a bright spot when thinking (and looking at) this (extremely strong man) intubated and sedated: I asked many questions about the intubation; and they explained to me that on a ventilator, there are 2 types of settings. One setting is so that the machine totally and completely breathes for you, and the other setting is so that you actually naturally begin the breath, and then machine helps to complete it for you, (which is the setting that Mark is on). That's a very good thing. He's basically breathing on his own, he's just now being assisted by the ventilator.

Now, they less time they can keep him on the ventilator, the better. I have asked and asked how long they're going to keep him on it, and they have no idea yet, but their goal is to get him off of it as soon as possible. We need to get his lungs stronger before we do that though, and he needs all the downtime and rest he can get before we start messing with it. He's exhausted himself quite a bit in the last 14 days and needs this rest so badly.

I sat here with him for his first shot of Campath two days ago, and then again for his second one last night, and I'll be here again for it tonight. He receives his Campath shot between 5 and 6pm every night, and I sit here in anticipation of it each time as the more Campath he gets the sooner his lungs will begin to heal finally, (that's the idea anyway).

I had the opportunity to sit with his main oncologist for an hour yesterday, and I have to say, she is wonderful. She very patiently answered every single question that I had, and in no uncertain terms told me that she was very confident that we will see him walk out of this hospital on his own, much healthier. I asked her if it would be alright if I got his blood counts every night so that I can keep track of them as each treatment round of Campath is administered, because I feel like seeing his white count diminish even a little bit is a glimmer of hope and something to hold onto. She smiled and said "you're thinking like a hemotologist! I think it would be great if you did that, no problem, I'll tell the nurses to give you the readings as you wish." She did make sure I understood however, that it would take a handful of weeks of the treatment in order to see any kind of marked (pun intended) improvement. I said that was fine but that I wanted the last few days of them in order to have a comparison from right now through the entire treatment. She understood and was fine with it.

Now, the issue is his lungs. After he's rested from his ordeal this weekend, for a few days, the team is going to continue to figure out the gameplan for what to do about his lungs. As soon as I know something I will let all of you know too.

So now, we wait and we pray and we visit him and we post our comments here and on facebook so that when he is awake, he can check it all out and draw upon all of your kind words and positivity.

I have to say that in the last 14 days, I have come to understand how amazing Mark's circle of friends are. Every single one of them have been here as much as they can, sometimes every single day, all of them have offered to help me out too, which I gotta say you guys, thank you...I don't have to words to tell you how much you all mean to me, and to Mark. You all really blow my mind and are just outstanding, amazing people. Mark is one lucky guy to have you all. Mark's family (The Vancuras) stopped by to visit yesterday and were awesome and kind and it was great to meet all of them, (wish it could have been under better circumstances). My friends that have stepped up, I don't know what I'd do without you. Thank you to those of you that have constantly checked in on me and Mark and for just everything. My family has been nothing short of outstanding as well; thank you for everything you guys.

You guys, Mark is a very strong man. The fact that he's stubborn beyond belief will also help him fight this bitch of a disease. You all know that. He's resting now to be strong enough for what's to come. The title of this blog entry is because it's something that Mark said to me a few days before he was intubated; like he was warning me to brace myself. I did and I have, and now it's up to us to follow his lead. HE'S positive he's gonna beat this; so what we need to do is believe him. We need to stay positive, we need to be here for him no matter what, we need to make sure we lean on each other and are honest about how we're feeling because you guys...this sucks more than anything can suck...but Mark has assured me that he's up for the fight. He's my man, and I believe him...wholeheartedly. We will all have our down days of course, but nothing like what he's to endure in the coming again, let's take Mark's lead and let's visualize him walking out of this hospital, and visualize him at the huge party we're going to throw for him when he's defeated this. It's gonna be one hell of a party; and Mark will be at the center of it to remind you that he cheated death and he beat take out your wallets and buy him a drink. (You know that's gonna happen).

I want to keep track of his blood counts so at the end of my blog entries, I'm going to put what I've gotten from the nurses for that day.

Here is a list of what is considered to be the blood counts for a normal, healthy adult:
RED CELL COUNT: 4.47-5.91
HEMOGLOBIN: 13.5-17.5
PLATELETS: 150-450

WHITE: 96.6
RED: 3.1

WHITE: 141.2
RED: 2.39

(more blood counts were taken then at 1:54pm)
WHITE: 96.2
RED: 3.11

WHITE: 98.4
RED: 3.25

WHITE: 110
RED: 3.2

4:30pm Jan. 16 3mg (induction dose)
5:30pm Jan. 17 10mg
(and then tonight Jan. 18th, somewhere between 5 and 6pm, he should be receiving his final dose for his first week of treatment, and he'll be receiving 30mgs)

Love to all of you.


P.S. Before I left last night, I shot a picture of his vitals because they were so awesome. Here it is: