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 guys...so 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.

-Leslie

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?"

"Yes."

"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."

"ICU??"

"Yes, we'll let you know."

"When?"

"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 matter...so thank you.

Love to all of you.

-Leslie

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"...um...definitely 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 does...so 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 word...so 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.

-LK

"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."

"Okay."

"Really?"

"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.