Sunday, January 31, 2010

Baby Steps

Jan. 31, 2010

This past Thursday, Mark's throat tube vent was replaced with a tracheotomy vent. This has proven to be much better for him comfort wise, as well as vitals wise, as since switching to this, his pulse ox has been much better.

The apparatus that was used to secure the throat tube in his mouth, has been removed from his face, and the feeding tube that used to be through his mouth is now repositioned to be through his nose, making everything much more comfortable for him.

He was also placed on constant dialysis to help clean his system out because his kidneys just weren't doing enough. The damage to his kidneys from his code (two weeks ago) was just a little too shocking and they're just taking too long to heal. The doctors have assured us that they will heal eventually but their own healing process is too slow for all of the other stuff that's happening in his body. They're just not strong enough to handle filtering out the toxins that are being released from the breakdown of the leukemia cells, so this is why the dialysis was begun.

It has proven to be really good for him, as ever since the dialysis (and trach actually), his vitals have improved quite a bit. He's had a little bit of trouble with his blood pressure and heart rate though. For about two days after the trach and the dialysis, his blood pressure would randomly decrease dramatically and his heart rate would bounce all over the place. They gave him some meds to regulate both, however, this morning (Sunday), they stopped both and he's been maintaining both on his own. (VERY good news).

After the trach was put in, they started to back off a bit from his sedation, waking him up more. Between Thursday night and today, Mark's been waking up, and has been more lucid than he's been at all in the last two weeks. He's still a little bit doped up, and he can't figure out yet why we can't hear him when he tries to speak, but he does understand everything and he does respond to you. (When I walked into his room on Thursday night and went up to him and kissed him, his flexed his feet and his eyes flew open, and I got a nice, big smile out of absolutely made my entire week).

It's been a tough couple of weeks on everyone, but on Mark especially. He's been fighting his ass off you guys. I think when you walk into his room, you can feel it. You can sense this really strong energy coming from him. Yeah, he's hooked up to a bunch of crap, and he's tied down to the bed, but he's fighting, and he's in there, and he's getting better. Stronger. The day it was most apparent to me was on Friday night when his oncologist came into the room to chat with me. She went over her theory as to why we still hadn't been seeing any decrease in his white count and she thought it was because he was receiving the subcutaneous shots in his belly and that's where he's been retaining a lot of fluid, so she was concerned that it wasn't sufficiently being absorbed into his body. She ordered that he start receiving the shots in his shoulders instead. After her explanation, she said, "Leslie, I want you to know that there is a very large group of people, here at The University of Chicago Hospitals that cannot get your boyfriend Mark off of their minds. While yes, our team meetings about him are only on Tuesdays, none of us can stop thinking of him, none of us can stop trying to figure out why this young man is still laying here in this bed. I promise you, he is a fighter, and we are all trying to get him better, it's just unfortunately a very slow process." Then, it was here that Dr. Odenike showed a very compassionate and human side of herself that I actually appreciated very much, she started to cry a little bit. The resident that was standing with her in the room, put her hand on her shoulder, and she continued speaking and said to me "I am sorry, I know that there are many doctors that are stoic and do not show much emotion, but there are also doctors that are not like that as well, I am one of them. I care very much for my patients, and I want you to know that Mark is very special to me, and I can tell by how many people I see here every day, no matter what time of the day it is, how special he is to everyone too." I thanked her, she hugged me, and then left the room to finish her rounds.

Today, (Sunday), a cardiology team was brought in because of Mark's heart rate. The main cardiology doc told me that Mark has what's called "Atrial Flutter"; wish is like a un-synched heart rhythm. He assured me that this is very common in patients that have other large organs that are in distress and that are in a state of recuperation. He believes that Mark's healing lungs are causing this irregular heart beat. He's put mark on a beta blocker called Esmolol. This will help not just with the heart rhythm, but also with blood pressure and will also make it easier to help get some of the fluid off of his abdomen.

What I took from all of that was that he said "I believe it's because of Mark's healing lungs that's causing this irregularity". His lungs are healing. This is outstanding news.

Also, as soon as his oxygen needs are lower, Mark will be given an attachment for his trach tube that he'll be able to put on the end of the tube in order for us to be able to hear his voice.

As I said earlier, yes he is lucid, but he's still on the Versed drug which really messes with your short term memory. When he wakes up and is communicating with you, he's very confused about what's happening, so you just have to remind him of where he is, and why he's restrained, (so he won't pull out the tubes that are keeping him safe and healing him). It breaks your heart because then he falls back to sleep and then when he wakes up, you have to go through it again. Last night he was awake for a while and I was able to update him on a lot, and I got to the "you've been asleep for about two weeks", he mouthed "bullshit", and he laughed. It's okay, I feel like every time he wakes up, he does remember some stuff, just not everything. I can't wait until they stop that particular medication and he can begin to retain what's going on. If only because you can tell how frustrated he is. He's getting there you guys, I promise.

As it stands now, his vent settings are about a 9-10 peep (they keep moving back and forth between the 9 setting and the 10 setting, but's not 20 which is what he was before), and he's at 60% oxygen and they just told me today that he's in charge of his own breaths now. AWESOME!!! So when this decreases even more, he'll be able to communicate with us a lot better. When he's awake and lucid, he's talking and talking and talking a mile a minute, trying to say stuff to us and trying and trying to express himself. Unfortunately, not 1 of us are very good lip readers. The only things that any of us can ever make out are "water", "this is bullshit", "home" and (my favorite) "I love you".

So, we've had two very good days...VERY good days. It's very exciting and yes, I'm happy for them but because ICU is so damned unpredictable, and things could change in a moment, I'm not going to be as overjoyed about it until they say to me "we're moving him to a regular room" and we're out of there. That day will come, we all just have to be patient (one of my biggest, personal lessons in all of this), and continue being there for Mark, and when he's better and we can hear his voice, I'm certain he'll have a LOT to say to us. I'll speak for everyone and say, "we can't freaking wait."

(Blood count update, I'm working on a document that I'll be able to share with all of you via a link. It's not done yet, but I'll post the link to it later when I have the whole thing typed out. As the days tick by, listing the counts the way I've been listing them is getting to be too much, so I'm putting them in a spreadsheet that's much easier to read and to compare the days).

Love to all of you.


Wednesday, January 27, 2010

ICU A.K.A. "The Crappiest Rollercoaster Ride EVER"

Jan. 27, 2010

Mark is approaching the cut-off time for having the throat-tube type of vent. Unfortunately, his lungs are taking a bit longer to heal, and he will need to remain on the vent. Now, Docs do not like to keep patients on this type of vent for much longer than two weeks because of the very high risk of infection. The next step will be a Tracheotomy, where they will be cutting a hole into his neck, and inserting the Trach tube there rather than having it down his throat, with his mouth open, giving greater incidence for infection. The sooner a trach is done the lower his chance of contracting ventilator-related pneumonia. Once off of the throat tube, he'll be able to exist without sedation, and he'll be able to interact, and speak (though the speaking part might take a little while after the procedure, so that his throat can heal. It is promised to be very raw and sore after they finally remove the throat tube). He will most likely have a feeding tube through his nose for nourishment purposes.

Other organs that are taking their sweet ass time healing are his kidneys. The Lasix he's been getting is helping, but not enough and definitely not fast enough so they will probably be giving him some dialysis treatments sooner rather than later. His body needs to be cleaned out in a big way; and this should help him.

I'm not sure when the trach will be happening, (I'll probably find out more later this evening), but my guess is that they're probably hoping to do it as soon as possible. The problem however, is that now Mark's been moved back up to a 12 peep, and an 80% oxygen assist on the vent. The Pulmonary team do not like moving from the throat tube vent to a trach vent with patients that have that high of an oxygen he STILL has to be moved down in order to get the trach. The last thing his doc told me was that he would be conferring with Pulmonary to see if they would, but at the time of the conversation, he didn't think so.

So, once again, we wait and we hope.

The brightest moment of my day yesterday was when I walked into the room, up to Mark's bed, leaned over, squeezed his hand and called his name. He opened his eyes, again extremely lucid, and around the breathing tube he puckered his lips and blew me a kiss. Two of them actually. I was SO excited, I'm sure I almost yelped but I was also in shock. I looked at Rob to see if he saw that too, to prove that it wasn't just "crazy hopeful girlfriend" syndrome, and he verified it for me. Clearly my reaction amused Mark because when we looked back, he was smiling. Then, as fast as that interaction happened, he was back to sleep. Talk about something to help you hold on. Your boyfriend whose body is riddled with an asshole of a disease, who can't breathe at all, or move at all, manages to blow you a kiss and smile at you, despite the fact that he's got a breathing tube shoved down his throat?? That's enough to keep on keeping on for a very very long time. Just thinking about it, I want to do a little happy dance. (Thanks baby, I'm sure you won't remember doing that when you wake up, but I promise you I'll never forget it).

He had a ton of visitors last night, and by the end of the evening, he was sort of trying his damnedest to stay awake and interact with people, and his heart rate was just spiking again, really high. (Also another fever, low-grade at around 101). It was time for him to rest so everyone trickled out, his nurse gave him even more sedation, and he was out again, resting peacefully. I watched his heart rate drop just a little bit before I left.

I'll try to post again this evening when I'm home from the hospital to give any sort of update I can.

Once again, (and I'm going to say this every time I post, because I honestly cannot say it enough): THANK YOU to everyone that's offered help, given help, come to visit, has come to my rescue (in more ways than 1), has checked in with calls, texts, emails, etc. All of you have been truly and wholeheartedly invaluable and appreciated through all of this...and you will continue to be.

Love to all of you.


Tuesday, January 26, 2010

It's The Good Days That Get You Through The Bad Ones

Jan. 24-Today (Jan. 26)

If there were bigger things to report, I would be posting more frequently but as of right now, everything is pretty much the exact same, with little bits of good moments and good progress here and there.

Today marks day 10 of intubation, and last night I can certainly say was one of the best evening's Mark has had in a while.

Last night while I was with Mark, I went up to him and just looked into his face. He very calmly opened his eyes, and very lucidly looked right at me. In the last handful of days, he has been opening his eyes but he's clearly hopped up on the goofballs and isn't very "there". THIS TIME, he was 100% there, so much so, I could hardly believe it. I said "honey, can you see me and hear me?" In response, he very clearly nodded yes, and didn't take his eyes off of mine. He lifted up his hand and grabbed mine and squeezed. It was a pretty outstanding moment, and I hugged the nurse that came in right after that. After prolonged eye contact, and me whispering encouraging things to him, he fell back to sleep. For the next three hours or so, this was his pattern about every 10-15 minutes at first, and then more frequently. As he started to awaken more frequently, and stay awake longer, I would remind him of his intubation, and he'd scowl and shake his head "no". (I.e. he doesn't believe he's been sleeping for 10 days, thank you amnesia medication). As the windows of wakefulness became more frequent, he'd become more and more agitated as he realized more that he was tied down and unable to touch his face/breathing tube. I just wanted to make sure he wasn't in pain, as he kept twisting on the bed and kicking his feet, all with a clearly irritated scowl on his face. I said "Mark, are you in pain right now? Do you need more pain medication?" And he looked right at me again, and clearly shook his head no. I said "Would you like me to turn your music up?" He nodded, and then fell back to sleep again. When he woke up again, he reached for my hand, and squeezed it again, and I told him to be calm, and relax and to try and allow the machine to help make him better, to try to not fight against it, (which he was doing by chewing on the breathing tube, and breathing really fast causing the machine alarms to sound). He did chill out a lot.

Before I left last night, I had a talk with the doctor and asked that he make sure that Mark was sedated through the night only JUST to make sure he was sleeping comfortably, as I didn't want him to come to full wakefulness without a loved one there to calm him down. Also, the longer he was off sedatives, the higher his heart rate would spike really high, and he'd upset himself. Doc agreed he needed time to chill out and rest, and he gave him some more Versed to chill out and sleep.

Most of the night last night, his pulse ox was at 95, and his heart rate was at 90, (when he was getting agitated, it spiked as high as 165). The breathing machine was at a 10 peep, and at 60% oxygen.

(Explanation of Ventilator settings: when you see me mention his "Peep" setting, that can best be explained by how much pressure there is, within Mark's lungs, after he exhales. Right now, the machine is assisting him a lot in the initial taking of the breath, and every time we all exhale, there is a little bit of pressure left in our lungs which keeps them inflated and able to receive more oxygen by our next breath, (otherwise our lungs would collapse). This extra pressure within our lungs (that keeps them in a "balloon-like" state), is called a Peep. You and I have a "peep" of peeps are like golf scores, the lower the peep, the better. At the beginning of yesterday, he was at a peep of 12, today he's at 10, which is good news. The way they determine how much to start backing off from the peep and thus weening him off of the ventilator, is by how long he can maintain a healthy, mid 90s pulse ox, and steady heart rate. He needs to maintain healthy settings for both, for over a full 24 hour period before they'll even consider turning down his peep.

Also, he's currently receiving 60% of his oxygen from the machine, which is a setting we also want to eventually decrease. So you have to think about the fact that the whole interior lining of his lungs are fluid filled. And think of it as like a sopping wet sponge, an already wet sponge can't absorb more water, so first it has to dry out in order to do it's job. Make sense?)

This morning, I spoke with his nurse and he's still on the same ventilator settings; and because he's spiked a fever, his heart rate is up as well. (Elevated heart rate is expected with fevers, and fevers are expected after his shots of Campath, which happened last night at 10:58pm). Unfortunately, his pulse ox is bouncing between 89-91 again, which is too low to consider moving down on the vent settings, (which could totally change by this evening).

Last night was seriously an indication that he IS getting better though. I haven't seen him that lucid, with such amazingly strong vitals in a while.

I haven't had a chance to get updated blood counts, but I will tonight and try to update them before I go to bed tonight, (if I'm not too completely exhausted when I get home from the hospital).

So, again, he's getting's very...very...very slow.

His kidneys are much better for sure, his legs aren't as bloated, and these are all good things to hold onto to help us all get through some of the more crappy days that are inevitable in the ICU.

Keep the faith you guys. He is bouncing back, he's just taking his sweet ass time which I'm totally fine with. ;)

Love to you all.


Saturday, January 23, 2010

Slow And Steady Wins The Race

Jan. 23, 2010 (Day 6 of intubation)

Okay, There isn't a lot that has changed, (really only meaning that Mark is still intubated and in ICU). What HAS changed is the fact that he is definitely getting a lot better. He is maintaining a much more stable pulse ox and heart rate over all, (though his heart rate increases when he spikes a fever, which the doc told me is a typical side effect of the Campath). His fevers don't tend to ever get too high, I think the highest was around 102 or so, and they don't typically last very long.

They were extremely worried about his kidneys but now have changed their tune and are saying that they're functioning a lot better than they were when he was first intubated (6 days ago). His "output" (i.e peeing) is a LOT better this week; they're giving him Lasix which helps with this process. Also, it helps with relieving some of the fluid that is trapped in his lungs, (had no idea that urinating actually helped fluid filled lungs). While his kidney function isn't "perfect", it's leaps and bounds better than it was last week.

They've got him on a steady stream of sedation, (Fetanyl and they just gave him some Ativan to mellow him out more because he was getting really agitated). Starting about two days ago, they've begun to shut off his sedation to "wake him up" at least once a day but when they see him getting a bit irritable, they interpret that as him being in pain and they put him under again. When the sedation IS shut off however, he does try his damnedest to open his eyes and he DOES listen to you. We consistently have to remind him that he's got a tube in his throat and he can't speak because it's very obvious that A. he's trying to say something, and B. he's really pissed off that he's restrained. We just tell him to relax and rest, and then immediately, he falls asleep again and chills out. The docs want us to keep trying to talk to him, to remind him of where he is, and to remind him that he has a tube in his throat. Because he's had the amnesia medication along with his sedatives, as he awakens, it's understandable that he's agitated, as to him, it's still last week, and his last memory of being awake was fighting with the team that was trying to intubate him. So it makes sense, but what's great is that he definitely listens to us when we tell him to relax, and to just try to open his eyes.

Mark's really good friend Talon got into town on Wednesday and has been with him every day since. He even gave Mark a mani/pedi (for the guys that don't know that I'm talking about: a manicure & pedicure). You think I'm kidding, but his feet look awesome...and so supple. Dino has been nothing short of awesome and has been here every day as well, he claims that Talon was the only one responsible for the manscaping but I still have my suspicions. Dino, Talon and Mark go way way back and have CRAZY stories about the hijinx the three of them caused. Let's just say, they put the "SHE" in SHEnannigans. Oh boys.

Mark's oncologist (Dr. Odenike)has changed his Campath schedule to be every other day now, which is good. He'll be getting the last of his first week of shots tonight around 9pm, we've got a LOOOONG way to go...but you know what? It's okay. I've got to say, I've personally flipped a switch about being patient with Mark's care, (hence the title of this post). I think when we all first learned that Mark was sick, and sick with something like Leukemia, and sick with a Leukemia that is so rare and aggressive, all I wanted was for someone to hurry up and fix my boyfriend. I can't tell you how many times I thought to myself "OKAY, shut up and fix him then!!" My natural impatience has been making this process get the better of me and help to dwindle my reserve. I finally made peace with the fact that this disease is FAST...but his treatment must be slow. I believe that saying "slow and steady wins the race". (It really does). The trick in all of this (for me personally anyway) is for me to keep reminding myself of that. The more time we take in Mark's healing, the more stable and secure and final his eventual remission will be...and it's not going to happen in a month, or two months, or even three months. It's finally okay with me because it has to be.

Mark will beat this, he will get better, he will walk out of this hospital on his own two, (very well groomed) feet...I just have to shut up and be patient.

So as of right now guys and gals, we wait. He's OKAY right now. He IS getting better, but it's just slow. It's a good thing that he's waking up every day, it's a good thing that he listens to you when you tell him to open his eyes. His lungs are still fluid filled, but they're a little better than they were, and for today, right this second, that has to be enough...and it is.


JAN 20, 2010
WHITE: 96.9
RED: 3.24

WHITE: 96.4
RED: 3.10

JAN. 21, 2010:
WHITE: 98.1
RED: 3.23

WHITE: 106.3
RED: 3.03

JAN. 22, 2010:
WHITE: 97.8
RED: 2.96

WHITE: 108
RED: 2.91

JAN. 23, 2010:
WHITE: 119.2
RED: 2.88

(CAMPATH shot scheduled for tonight at 9:00pm)

Love to all of you,

Friday, January 22, 2010

I changed the order of the blog posts

Just a note to you all: Originally when Mark and I sat down to create the blog, we did it so that it would appear in chronological order; so that everyone would get the story correct. However, as the days go on, it's getting a bit overwhelming to scroll through the entire thing, (and all of my long winded posts), to get to the most recently updated one. From now on, all new entries will appear here at the top of the blog, to keep it all organized and easy to read. (to get the full story in order, read it backwards).

I'm new to the blogging world, so I'm still figuring out the logistics. Forgive my blog-ignorance.

I'll be posting a new entry later today.

Thank you for keeping up; and for all of your wonderful words of encouragement.


Wednesday, January 20, 2010

Day 3 of Intubation...

I'm having a particularly down day myself (no 1 particular reason, I just miss talking to my boyfriend and seeing him smile and hearing his voice)'m going to get lost in just reporting back to you all (technically) exactly what's gone down in the last couple of days.

Every morning, right before I start work, I call the hospital for an update on how he did through out the night. Yesterday A.M., I called to get the report. His nurse Kathy said that he had a pretty quiet evening, and that his iTunes were still playing, (when I left on Monday night, I made sure his iPod was on shuffle and told his night nurse to keep it going all night no matter what. Music mellows him out and with his erratic heart rate, both Lori and I thought it would be a great idea to keep the tunes on).

It's a good thing for Mark to have a "quiet" and uneventful night so I was happy. I got even more excited when Kathy told me that early yesterday morning when she called his name he tried to open his eyes and did, though only a little bit. (They have him under very heavy sedation, and on an "amnesia" drug that makes you totally lose track of time). Then she told me that she held his hand and told him to squeeze her hand if he could hear and understand her, and he did. She then asked him to wiggle his toes, and he did that too. I cannot tell you how much this information changed my day immediately. I was so happy to hear this. I mean, I know he's just placed under sedation, and that he's fine, it's just scary and any amount of communication or lucidity for some reason makes me happy.

Then Kathy let me know that they held off on giving him his third dose of Campath because they were worried about his kidneys and they wanted to see if the kidney problem was brought on because of one of the side effects of the Campath.

(NOTE: One of the things that happens in patients with Leukemia, that are undergoing Campath treatments is that as soon as the Campath starts to work, the cancer cells in the body start to break down. When cancer cells break down, they release various toxins into the bloodstream that could cause a myriad of other issues and complications. So, when giving Mark each Campath treatment, he is closely monitored to make sure that they can head any of the nasty toxins off at the pass. What they'll do is administer other drugs to counteract the effects of certain toxins. This IS something we definitely want them to do; but it also makes him very sick and very weak. The fact that he's under sedation doesn't help a lot either; but as we all know, that's to keep him oxygenated enough to keep working. (If it isn't 1 thing, it's another)...)

SO, they are worried about renal failure, (i.e kidney failure). I asked what exactly caused that; or what their suspicions were that could have caused that and they actually DON'T suspect that it was the Campath that did that. What they think is that it was his brief code that shocked his kidneys. (ANOTHER NOTE: When other more important organs in the body are in distress, the kidneys are the first to sacrifice themselves, so it would totally make sense that the code (i.e. heart and lung failure) is what shocked them. Basically what they immediately do is stop accepting blood from the body in order to keep running smoothly thus forcing that vital blood to be used up by whatever organs are in distress, (heat and lungs). Make sense?)...

Now, what they've told me is that they're not worried about long term damage at all. They in fact believe that the kidneys will eventually and totally heal themselves over time, but that in the course of Mark's treatment, they may have to give him some dialysis in order to help him sufficiently clean out his body, (thus also helping to remove and rid his body of all of the toxins that are being released from the constantly breaking down cancer cells because of the Camptah).

That's that explanation.

They also inserted a chest tube yesterday in the lung that had the pleural effusion. (A pleural effusion: excess fluid that gathers in the pleural cavity, which is the fluid filled space that surrounds the lungs). Now, originally I thought that they placed the chest tube in the side of his lungs that had this excess fluid, in order to drain it...not the case. I spoke directly to his oncologist last night and she explained to me that they actually put the chest tube into the side of his chest that experienced the pneumothorax (which can actually be a more dire medical emergency where air or gas is present in the pleural cavity, and this happened during his bronchoscopy when they accidentally punctured one of the tiny air filled sacs in his lung). A pneumothorax can cause a shitload of pain, (more-so I understand than excess fluid, though both are painful), so this was of a higher priority. The chest tube was inserted and the air (and a small amount of fluid) were helped to be released. Almost immediately, his pulse ox went to the mid 90's (freaking outstanding!!), and his heart rate stayed at a very solid 99, (also freaking outstanding). So moral of the story: we like the chest tube decision.

After speaking with Dr. Odenike at length again, she informed me that because Mark missed his third day in a row of the Campath that he did in fact receive one last night (TUESDAY JAN. 19TH). I asked her if he was back on track and that he'd get his three days in a row again of it; she explained that since Mark is an inpatient that his new schedule of Campath administration would now be on Mondays, Wednesdays and on Fridays...which is better actually as it makes it easier on his body and also so that his team can closely monitor any possible complication that could arise from treatment.

Below is one of the last chest films that they took of him BEFORE they inserted the chest tube, (I'll get a snap of one later tonight of what it's looking like now, about a day after the chest tube was inserted, and will post that in the coming days). (chest xray: any of the dark space you see is actually, free and clear breathing space, any of the white space you see are imperfections and fluid, which are the culprits of his not being able to breathe at all).

(Oxygen update as of Jan. 19, 2010: they've totally taken him off of his Nitric Oxide gas (very good news), and he is now at only 50% oxygen (awesome), and he's been maintaining a healthy mid 90's pulse ox, and around a 100 heart rate).

WHITE: 81.5
RED: 3.06

WHITE: 84.3
RED: 3.20

WHITE: 86.5
RED: 3.17

WHITE: 98.1
RED: 3.12

Mark's night nurse today was Jean (730pm-730am)

Chest Xray:

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:

Thursday, January 14, 2010

Sit-Com moment of the Day

Christian was hanging out with me in the afternoon; he was going to favor me by taking my car in for an oil change, but there were no open appointments. He had brought me coffee anyway, and I was dozing in and and out of sleep due to the amount of meds they were feeding me at that point, So I am sure my company wasn't that great.
The whole day I was just "working at breathing" so I was very tired, and Chris got to see the irony of so many people coming in to see every fifteen minutes and asking me the same questions over and over, only to leave by saying "you should get some rest". X-ray, blood, vitals, repeat.
They inform me that they are going to take me into ICU. Maybe. If they can find a bed. If they can't, they perform the keg-tapping right here in the room in which I lay.
"We'll know in ten minutes", is the word we get at 1:50. So it's no surprise that they come in and say they will do the procedure in-room at 2:15. Then again, no surprise, when at 2:30 we are told they've got a room, and we'll be going, like, now.
The RN loads up my bed with a traveler Oxygen tank, my IV, and drop the side rails so we can navigate through the narrow doorways to ICU. Christian and the NSA on duty start packing up the room of accumulated items gather in a short week and realize that we may need a bellman's cart. Not wanting to need a map as well, Chris asks the RN if he can come along to see where the steamer trunks will be forwarded to. No Problem! Chris then hops on bed-moving duty and we carefully navigate our way through the twisty hallways. Only to find that Chris will not be allowed in ICU right away, and he gets left at the "front gate" and I am wheeled through, down to the room waiting for me.
The room is there, there are two nurses waiting to accept me, and three residents. They line up my "old bed" with my "new bed", raise it to a matching level, and more docs pile into the room, getting into their game faces. I am asked if I can slide over onto the new bed by someone and proceed to do so, then someone begins lowing the of head my bed down, and I ask "I am laying down for this? That's not gonna happen". "oh, yeah, oh yeah", while continuing to force me into what I see as certain death. (they tried making me lay down earlier in the day and the pulse-ox dropped from 93 to 76 IN THE PROCESS of laying down). "Up, Up, Up", I yell and finally get compliance.
Sliding over, I get a minor cramp in my left leg, and holler out "OOh, cramp, cramp", which brings a nurse running toward me from the doorway. She almost makes it to me, when she stubs her toe on and kicks over my oxygen tank. "Does this belong here?", she asks to the room and is largely ignored by the roomful of Drs. I would have answered her, but I was busy writhing on the bed with my leg cramp and a sealed oxygen mask that used to be connected to that tank she was carrying out the door.
I get the mask off of my face and start gasping at the thin air in the room, only to have the nurse return and notice my dance, red face and manic behavior.
She gives me my Oxygen and I get to suck that invisible gas like the first beer after work on hot summer day.

The whole scene plays in my head now like a missing clip from "Faulty Towers"

Wednesday, January 13, 2010

The University of Chicago

Monday January 11, 2010:
Today, it is our third day here at UofC. Mark is in an isolation room to clear him of any infections that could endanger any other patients that he will (eventually) be in close proximity to on the Leukemia floor. The idea first here is to clear up the pneumonia in his lungs, drain the fluid from behind his lungs, and clear him of any other infection before he's moved to a regular room.
It was my first day back to work after the holiday and the previous week's scary ordeal at Illinois Masonic. I've been sleeping right next to Mark in his room every night since he was admitted seven days ago. The hospital staff brings a cot into his room and sets it up right next to his bed, so if anything happens in the middle of the night or he needs something, I can help immediately.

Because today was my first day back to work, I was unable to stay with Mark during the day. One of Mark's best friends, Vanda (a nurse and overall amazing and kind woman), stayed with him all day. Today he'd had a procedure done to drain the fluid from the back of his lungs. They removed about 2 liters of fluid from his body, Mark insists that it looked like home brewed beer. :) After the procedure, breathing was intensely easier for him, and he didn't feel like he necessarily needed the oxygen much more; (though the nurses still make him wear it).

He also had an echocardiogram done as well to make sure his heart was in good enough shape to endure what he's about to go through. These first few days are all about preparing him physically in order to begin his chemo treatment.

Tomorrow we meet with his oncology team to not only find out what the chemotherapy schedule will consist of, but we also will get details about the results of all of the tests he's had done, (at last count I believe it was around thirty-something vials of blood that have been taken thus far, I'm sure Mark would correct me but he's sleeping right now).

I think this long and drawn out initial blog-entry gets us up to speed. We'll start keeping a daily log of what's going on with him, how his health is progressing, what he's thinking, which docs are making him laugh and which ones piss him off. I'll also post myself about my perspective of things as well.

Please feel free to leave any comments or thoughts and words of encouragement here. Every single positive word counts and brings us closer to the Curing of Vancura you bring it on.

So far...thank you to every single one of you that have stopped by to visit, (at one point I think we had like 9 people in the room, all in "clean gowns", gloves and face masks. I should have taken a picture).

If you'd like to visit Mark, make sure you just check in with him directly or with me so that we can be sure that he's up for it. These initial days have been totally exhausting for him; and with the chemo starting shortly, it's probably good to check in just to make sure. Also, because they're going to be testing him constantly, it's likely that there will be days where he's barely in his room. Feel free to text me or call me; (Mark too, but it might take him a minute to answer you).

Okay guys n gals, I'm tired too and Mark's snoring is making me want to cuddle up and sleep myself.

Love to all of you.


Some photos I snapped during some more smiley moments:

Mark at Illinois Masonic

Illinois Masonic 2

Illinois Masonic 3

Mark & Jimmy at Illinois Masonic

Mark being transferred via ambulance to The University of Chicago Hospitals

Day 10 at UofC

Rough, rough, ROUGH night last night.

Yesterday during the day, I called Mark from my office just to check up on him. When I left the hospital early yesterday morning (Jan. 13), he was in good spirits, bright eyed, getting ready to order himself some breakfast from the hospital cafeteria...things were great.

Usually all day long Mark and I text each other with updates, encouraging words, and silly things to make one another laugh. I hadn't gotten one from him all morning or early afternoon, so I sent him one. Then another, and another, and another without an answer. So (of course) I begin to panic. I called his cell, no answer, called his room, no answer. Around 430 or so I texted his friend (& coworker) Lori to see if she'd heard from him at all, she hadn't but was already on her way to the hospital. Once she got there, and didn't find him in his room, she discovered that they had brought Mark down to Pulmonary to do a Bronchoscopy which he still was not back from.

Finally they bring him back (about six hours after the procedure, which they knocked him out for). We didn't realize he was even getting that done, so this is why I was confused and unsure of where he'd disappeared to. He got back into the room and was understandably starving, so he ordered himself some food. Vanda arrived shortly after Lori, then I got there and Brian and Laura showed up to visit as well; and shortly thereafter Ryan came by with some PSP games for Mark. (thanks everybody BTW).

I arrived around 7pm, and between about 7 and 8pm (after he'd eaten a small amount), the anesthesia from his procedure was starting to wear off a little and he was starting to really feel some pain in his lungs. Each 5 minute span that passed, we all noticed that his breathing got worse and worse. The nurse came in and switched his cannula oxygen (that means the little oxygen things that go right into your nose) to a full face mask, (that's the one that looks scarier on patients but is a LOT easier for them to breathe and it doesn't irritate the nasal passage). But we notice that he's really sucking in the oxygen and is not feeling like he's getting enough, ("Oxygen Hungry" is the term that we learned from our awesome friend (and kick ass nurse herself) the lovely Vanda, (fyi: we're very lucky to have her on our side, as she explains EVERYTHING that's happening and has just been a huge saving grace!!!! LOVE you V!!).

His oxygen got turned up and it only made it better for him for a matter of minutes. He was actually getting worn out from trying to breathe. After everyone left for the night was right when things started to get a little nuts.

Starting around 930pm, it was just way too difficult for him to breathe, something was up. So I went and grabbed the nurse, who in turn paged the resident on duty, who in turn paged the thoracic surgeons on duty. They ordered another chest xray at around 1030pm and discovered that even more fluid had built up again on the back of the left lung, and that there was "partial air escape" from the procedure they did on his right lung. I went to speak with the Thoracic team to ask why they even did a bronchoscopy anyway, and they told me the reason was so that they could take a biopsy of the inside of Mark's lung to see if any of the Leukemia cells had infiltrated inside the lung and was actually the reason that we can't seem to get his lungs healed. Had no idea they even suspected that and that was the first I'd heard that. Mark too.

The Thoracic team was now contemplating inserting a chest tube into Mark to help him with his breathing; but because this is a pretty intense decision, they wanted to see how he'd respond first to a few breathing treatments before they went ahead and did that. Breathing Treatment: (that's where they put like a saline mist through the oxygen mask with a bit of a medication that helps to open up the lungs). After the first breathing treatment, he was a little bit better and around midnight, was when one of the residents came in to discuss more about the chest tube. I said "don't they do chest tubes for people with collapsed lungs?" He said "His right lung is partially collapsed, that's what the wheezing sound is when he breathes out". (To be honest that sorta pissed me off cuz um...why not tell me that to begin with??).

"How did his lung collapse?"

"Sometimes that happens with the type of procedure he had today?"

"And the chest tube will totally fix that?"


"Will it screw him up more if he gets a chest tube?"

"It shouldn't, but we're thinking of sending him to ICU so he has more 1 on 1 supervision."


"Yes, we'll let you know."


"I don't know."

Now it's about 2am; and Mark has finally relaxed a little because I asked that the doctors give him like an hour to calm down, (his heart rate was intensely high and as he told the team of surgeons when they asked him how he was feeling and why he was sweating so badly, "I'm freaking out, that's why I'm sweating my ass off!")

After of about an hour of a steady pulse ox (a reading to tell how much oxygen is in his blood, you want it to be in the mid 90s and up), and his heart rate was under 110 and he was actually finally sleeping a little; I talked to the Thoracic surgeons again and asked if the chest tube was definitely happening. They told me that they wanted to try to see if he could make it through the night without one first as Mark wanted his actual oncology team to be there when and if the chest tube happened, and not the midnight team that didn't really know his case as well as his regular team did. I asked "Is that safe when a patient has a partially collapsed lung?" They said it was if he was supervised closely, which...he definitely was.

The nurse came in and gave him another breathing treatment, and some more Dilaudid and then a drug called Lasix which helps excessive fluid accumulation and swelling in the body. The docs told me that the bronchoscopy definitely irritates the lungs when performed and that this is where most of his discomfort was coming from.

He was snoring now, and breathing steadily, and the wheezing had almost stopped. He was comfortable. I layed my head down on the edge of his bed and slept for a moment, then I felt his hand touch the back of my head and wake me up. He was totally awake, staring right at me, smiling. Not only that, but...well...(and in the name of keeping this blog clean as I know that my mother and entire extended family is reading this), I'll say this: he grabbed me in a silly way that only a boyfriend should grab a girlfriend. Get me? Pretty much indicating "sweetie, I'm totally fine, stop freaking out." So, I did.

I went out of the room and told the docs that he was comfortable now and that as long as they thought he was safe to sleep, that he should be allowed to get some rest and asked if they would stop waking him up every ten minutes. They said it was safe as long as he kept his pulse ox/finger sensor on. I stayed awake watching the machine for a while to make sure it was steady; planning on running out of the room to get the nurse had it gone crazy again. It was fine. He was sleeping. I calmed down too.

I had a long conversation with one of the Thoracic surgeons about what was up with him. Here's the deal:

Now the docs aren't totally sure that the "infection" he has in his lungs is a separate infection, aside from his Leukemia. They now suspect that his infection could be PART of his Leukemia; which is why they did a biopsy last night. The fluid he'd had drained from behind his left lung earlier in the week is back again, and they are also testing that to see if it's part of the cancer or it's own infection. They are leaning toward it being part of the Leukemia as most of the infectious tests they've done to figure out what type of pneumonia (or whatever) infection it is, have all come back negative. IF the infection is in fact deemed to be part of the Leukemia, they actually plan on beginning the Campath asap; which will then hopefully begin to help heal him and get him on this road to actively getting better.

The reason they are moving so incredibly slow, (because that's exactly what I asked them, "why are you guys taking forever to do everything?"), again has to do with the fact that Mark's type of Leukemia is so rare, that they HAVE HAVE HAVE to test absolutely every single angle to make sure they are not missing a thing. They are being careful, so we (I) just have to remain patient and steadfast and trust that this team of experts are taking every precaution that they can to get Mark healthy.

So you guys, yeah. It was a rocky night. But I did go into work this morning after waking up to find that his breathing was a LOOOOT better; and the docs are planning on removing the fluid from his lungs again. I spoke to his oncology team before I left, (who have been nothing short of wonderful and patient with my impatience and bitchiness), and they promised me that Campath would be starting soon (not today though), and that I can page them whenever I want to see what's up (especially if I can't find him like before). Right now they're just trying to make him as comfortable as possible before the Campath begins; which (again) they assured me, was starting as soon as possible, (if not this week, then early next week for sure).

I do trust them. I do think they're doing a good job. I just hate being totally out of control of helping him and solving the problem.

Thank you again for all of your wonderful words of support and your visits and texts and emails and cards and gifts and just all around kindness. Everyone has just been so incredible. Both Mark and I are totally drawing on that positivity every day...and it really does thank you.

Love to all of you.


Tuesday, January 12, 2010

The Diagnosis

Mark ended up being hospitalized at Illinois Masonic for five days, with a barrage of blood tests, various combinations of IV drips and pain management, xrays, cat scans, etc. We not only discover that his white cell count is crazy high, but his spleen is enlarged, and he's got fluid behind his left lung, and pneumonia to top it all off.

On Friday Jan. 8th, he was transferred to University of Chicago Medical Center with a diagnosis of T-Cell Prolymphocytic Leukemia. It is a very rare and aggressive form of cancer. Please don't make the mistake I did and read whatever random thing you find on the internet about the disease; the fact is that because it's so rare, lots of the information online is old and not at all up to date with any of the current prognosis reports or therapies. I did a great job of freaking myself out based on the crap I read online and of all people, Mark had to take the laptop away from me. I've since come to rest with the fact that he's been diagnosed...bottom line; and it's a fact, and there's no amount of keyboard problem solving I can do that will change the fact that he's got this suck ass disease.

"Did she really just use the "C-word"???

January 12, 2010:
We woke up with the understanding that Mark's oncology team would be stopping in to explain what his treatment plan was. We've both been waiting and waiting to hear what to expect, and it's kind of driving us both nuts. If you asked Mark though, he'd probably tell you that I was more anxious and impatient about it than he...(he'd be correct).

Early on in the morning, cardiology came by to take Mark to get a stress test, (again, this is all part of making sure he's healthy enough to endure the upcoming, hard treatment to battle the Leukemia). When he's out of the room, I stay there and try to close my eyes for a few minutes or I flip channels. While he was gone, his nurse at the time (the nurses are different every day, I don't think we've had the same one twice yet), came into the room and said that they needed to move Mark to the opposite side of the unit because they had another patient in the ER waiting to be admitted, and of course Mark's isolation room was the only one with a heart monitor...whey they needed. So, I immediately began packing everything up as I wanted to have him moved and settled in before he was back from his stress test.

His new room is "TS676", (and for those of you that would like to send him something in the mail you can send it to:
University of Chicago Hospital
Attention: Mark Vancura - RM TS676
5841 S. Maryland Ave.
Chicago, IL 60637)

So he gets back from his stress test and slept for a bit as that (understandably) exhausted him too. It's mid-afternoon now and we've still yet to see his team to get the details about what's up.

At around 3pm or so, a pulmonary team came in to insert what is called a "PICC Line" into his upper arm. This is a tube and valve system that is inserted underneath the skin of his upper left arm, and travels through his upper chest to right near his heart. This system is where his chemo (more on that later) & all IV medications will be administered through. It also makes it so that they don't have to keep sticking him with needles. The PICC line is also something that will remain in his arm even if he is (later on) cleared to leave the hospital in between treatments, (again, more on that in a bit).

I needed to run some errands for Mark so I left at around 3:50pm, and of course not 10 minutes later, his team comes by. Here are the biggest key points that we learned:
-Mark's T-PLL is a disease that is so rare that there isn't a lot of research about it, however, his oncologist/hematologist is an expert in her field and has a LOT of experience dealing with Leukemia. (She told Mark that last year they only saw 1 and maybe 2 cases of the specific type of Leukemia that he has).

-Here's where Mark's disease lies in the hierarchy of Leukemia's: There's "Chronic" Leukemia, and then there's "Acute" Leukemia. Mark has a type of Leukemia that lies right in between those two types (leave it to Mark to pick the most difficult one, he keeps saying "do I do anything the easy way" not)...which means that therapies that are used for each the CLL (chronic) and ALL (Acute) are going to be used on Mark. A drug called Campath is what the team has decided to go with. It's a drug that the FDA has approved for the use of treating CLL, but not necessarily for T-PLL, but UofC is a teaching/research hospital and therefore they're allowed to utilize this drug for this purpose.

-Mark's doc said Campath is it's own drug and therefore cannot necessarily be called "Chemotherapy". Chemotherapy attacks all parts of the body, while Campath is designed to attack cancer just in the blood (i.e. leukemia is cancer of the blood). She specifically said "It's not really Chemo, but if you call it that, I won't be offended". So for all intents and purposes, Campath "is" (sort of) Chemo just in a different way. Campath also does not affect your DNA like chemo genetically, he'll be safer (so-to-speak).

-His Campath treatment will begin as soon as the infection in his lungs is cleared up. His treatment will be 3 times a week for anywhere from 4-12 weeks. The doctor's plan here is that Campath will force his cancer into remission; and as soon as he's in remission, he will have a bone marrow/stem cell transplant. Her exact words were "...I'm confident that with the use of the Campath therapy and in conjunction with the transplant, that we can cure you." She totally used the "cure" word; and not one single doctor that we've seen in these past 9 days has ever one time used that it gave us both something pretty profound to hang onto. Still, she didn't promise anything, but the way she explained the plan really pushed us both into an extremely positive mindset.

-He will remain in the hospital for his entire treatment because Campath will be attacking all aspects of his blood, (red blood cells, white blood cells and his platelets), causing him to be extremely susceptible to infection and sickness. So, he'll have to remain there in order to make sure he's healthy. (note: if you think you want to come visit him, even if you suspect you may have even the tiniest cold or whatever, give him a call instead and wait till you're better, cuz we've gotta keep this guy healthy...dig?)

I think that brings us up-to-date so far. Keep checking back for updates, and THANK YOU SO MUCH to everyone that has offered to help out, that has stopped by for visits, for the ENORMOUS amounts of phone calls and texts. Every little bit and every single positive thought and amount of support truly does help.

Our circle of support has been so incredible. Thank you everyone!!

Love to you all.


Monday, January 11, 2010

"Honey, this isn't just a back strain..."

After about two weeks of holiday partying and visiting family and "go go go"; Mark and I decided to spend Sunday night January 3, 2010 at home, watching movies, drinking some wine and just chilling out. We did just that and actually went to bed fairly early, (for us anyway).

The entire night he'd been a bit uncomfortable because of an ache in the lower, left side of his back, somewhat beneath his ribs. He assumed that it was that he'd "slept funny" and pulled a muscle in his back. I hate seeing him in pain, and as the night progressed, it got worse and worse so I offered to massage his back and try to get the knot out. I tried everything, light massage, slightly harder, hot towel, aspercream. I even called a massage therapist friend of mine to make sure I was doing it correctly and to get some pointers. After about an hour of working on the knot, he actually felt a little better and we decided to go to sleep.

At around 3am, he woke up screaming and writhing in pain as laying flat, or lying down at all, hurt him too badly. He got up and started pacing around my kitchen, sat down for a bit, really just trying to find some way to sit or stand that didn't hurt. It wasn't happening. No matter how he positioned himself, he was just in agony and I couldn't watch it anymore.

"Honey, I think this is more than just a back strain, I think we should maybe go to the ER."

"We're not going to the ER, it's fine. I just need to get some sleep."

"You can barely sit down, how do you think you're gonna sleep like this. I think we should go."

"I'm not going to the emergency room for a back pain."

Here was where there was a long pause in the conversation as I just stared at him and he moaned in pain, clutching his side.

"Mark, I'm pretty sure honey, this isn't just a back pain."

"I know."

"Okay, then we're going to the Emergency Room, right now."



"Yeah, get my wallet."

So I find his wallet and after figuring out where we need to go from Mark's insurance card, we head to Illinois Masonic.

That's the story of what it was that actually prompted us to even go to an emergency room at all. A suspected back muscle strain.

In the ER, after waiting an eternity to be called back, we finally go. Three and a half hours later, after the doctor almost sent us home with some valium and ibuprofen with a "pulled muscle" diagnosis, and after I asked her "are you absolutely positive that all this is is a pulled muscle? Are you sure", and after she ordered blood tests because I asked her to be sure, we were told that Mark's white blood cell count was abnormally elevated and that they planned on keeping him overnight to do more testing.