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"...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.