Sunday, February 28, 2010

Million-Dollar Man

Baby Steps.
I've got to take baby steps. My impatience with my progress is unwarranted yet I still have to force myself to slow down and take those baby steps. I want to be healthy NOW and have a hard time getting through the little things that will get me back into a reasonable body. Right now, I'm all skinny and bony and uncomfortable in almost any position. Too weak to run, too tired to workout very long and too impatient to wait.

This morning, I total all of my health claims and was shocked at how fast you can run up a million dollar claim. Apparently all this great treatment I've been receiving doesn't come cheap. The total as of this morning was $1,013,789. That's a lot of money to rack in just two months, considering I slept through three weeks of that. Good thing I've got a great insurance plan. Makes me feel seriously like Lee Majors because I've got two more months to go, a Stem-cell transfusion ahead of me and corresponding three-week hospital stay. Let's just hope it all goes smoothly so I don't end up in life-long debt.

I'm feeling good today, this Sunday morning, as the house is quiet, the animals are still sleepy, Leslie is sleeping in, Rob is sleeping in and I've got a breakfast in me and time to sort out my thoughts. Now I can work my legs a little bit, soak my feet and wait for the day to unfold. This is the life of a million-dollar man.

Monday, February 22, 2010

When Doctors Do Happy Dances

Feb. 22, 2010

Leslie here!!! Hey everybody!! So I'm back to (somewhat) of a normal routine; though I've been reorganizing my commutes/day/life/etc. so that I can be near Mark to help out around the house and help with his recovery. It's going well and (for the most part), Mark is an outstanding patient. HE may think that his progress isn't that great, but let me tell you, I feel like I've got my man back!! Yeah, he walks around a little slow, but so what...HE'S WALKING...and joking, and laughing and complaining and being silly, and loving, and jeez...to me, that's fanfreakingtastic!!

So I've started to devise some household systems for him that will A. make his life much easier and help to make his environment less complicated to navigate, B. set habits in place that keep his house (and him and his visitors and myself) as germ free as possible, C. Weather he likes it or not, I'm revising his very "bachelor-esque" way of organizing his laundry.

He can't really tackle the stairs in his house, so he can't go down there to do laundry anyway, so the system is under my attack and the articles will be clean, organized and brought UPSTAIRS and actually put away in places where he can easily access them, (i.e. like drawers and closets as opposed to oddly organized piles on a table in his basement "manroom").

Yes, Mark has/had a "manroom" in his basement. For those that don't know - Manroom definition: any place that a man exiles himself to do deceidedly "manly" things like play video/computer games, hang neon beer signs, play pool or air hockey or any other "please don't put that in the dining room" type of game; a place to work on/create/build/take-apart/invent structures for various uses, i.e. a "workshop"; (and in some cases, but not Mark's, house inordinate amounts of action figures, posters and comic books).

All of Mark's computers and gadgety things WERE downstairs in his manroom, his friends (while Mark was still in the hospital), have since moved many of these things upstairs into the now "office" so that he can easily access everything; and since he used to spend the majority of his time in his manroom, his laundry-logic was to just keep all articles of clothing in the basement, organized in piles on the table so he could easily and efficiently grab what he needed. Well, times have changed and the upstairs closets are going to start getting used. :)

So yeah, he's doing amazingly well. He keeps listening to his docs, and is staying on top of all of his physical therapy and general care. The hospital shipped an enormous amount of medical supplies to his place that we've yet to find a civilized way of organizing, (they're currently just sitting in boxes in the dining room because there's really just so much of it, it's kind of overwhelming). They've even sent us a suction machine. (NOTE: people with Trach's have to get occasional suction if their lungs are producing any kind of fluid. When Mark was in the hospital we had to have this done repeatedly (like about a dozen or so times a day), and in the time that he's been home, I think I've helped him with it maybe three or four times total, which is AWESOME. I'm telling you all, that trach's days are numbered).

I've also sufficiently changed and cleaned the whole trach apparatus for him and I gotta say; you'd think it'd be more gross, but it's not at all!!! It's actually kind of interesting and cool. I think he panicked about it once, when we were cleaning it and he got his first glimpse of what it looks like without the tube in it, and it startled him a little, but it was fine. We got it cleaned and put back in; easy peasy.

What's interesting too is how the two of us have changed in the six weeks he was in the hospital. I've had no choice but to become a much more patient person; and he's now nudged the other way, and is less patient, but it's mostly with his own progress. I keep reminding him that Rome wasn't built in a day and that he's doing great. Either way, with whatever emotion that seems to come out of either one of us, we somehow inherently know how to balance each other out in a way that is so constructive. I think we make a pretty kick ass team.

His feet are still doing the fluid-retention-swollen thing; and to date, it's the most irritating thing for him. That's really why he's forced to walk so slowly; it's because his feet are at least two sizes bigger than they normally are. Oddly, the rest of him is not. At the beginning of all of this he weighed about 225; and today he's down to 206. As he expressed to me yesterday, "I can FEEL the weight falling off of me". This is odd too since, he is constantly hungry and is constantly eating. (I'm not exaggerating when I say he eats 2 breakfasts a day, 2 lunches and 2 dinners every day). We suspect this has a lot to do with the huge array of medications he's on; but I believe at today's doctor's appointment that's one of the questions on his list. Stay tuned.

He was getting a bit of cabin fever yesterday so I took him out for the first time in a while. Nowhere major, we just went to get the car washed; off to payless to see if they had shoes in his swollen-feet size (14 or 15 is what we were guessing), then off to Target and the dollar store to stock up on hand sanitizers and other essentials. He was exhausted when we got home but really happy that he'd gotten to venture out. OH, and he got to devour a Chicago-dog; he was quite honestly a very happy man, especially after that part of the day. Then even more so later on in the evening when Christian, Sandy and Jimmy came by and we watched the prelim U.S. vs. Canada Olympic Hockey game complete with pizza and wings. He was all smiles by the end of the evening.

Me? I'm discovering very domestic aspects about myself that I've never really fully explored before; and I'm finding that I like them. Shocking. Artsy-city chick likes to successfully run a household and take care of her man. Who'd a thought? It has everything to do with Mark though. If it makes him happy or more comfortable, I'm on it and I'm excited to do it. Meals, laundry, naptime, showers, medications, dressings changed, tv shows/movies, whatever...bring it on. Like I said we make a pretty great team and I'm pretty positive that we bring out the best in each other.

So onward and upward you guys. And I just got a text from Mark (and from Jimmy) telling me that today at Mark's doctor's appointment, that Dr. Odenike came by and did a happy dance about his progress; and told Mark that it "made her year" when he was released!!!

Wow. Just wow.

Love to you all.

-Leslie

Sunday, February 21, 2010

The "looking great" factor

I've had a lot of visitors this week at home, and all of them tell me how great I'm looking. I was having a hard time with this as I never saw myself all tubed up, tied down, and nearly comatose. So All I could think was that I looked like crap with my hair all crazy, my walk that takes two minutes to leave a room, and the constant need to use the bathroom (thank you Lasisk).
So when I saw pictures of me laying on a bed with a tube in every available orifice, and read my charts about my heart nearly exploding, being coded and doped up for weeks just to keep me alive, I started to understand.

I'm lucky to be alive.

Somehow, I fought against leukemia in my sleep, now I fight against it in my waking hours with exercise and diet. Diet meaning eating whatever I can. Nonstop. Exercise means lifting two pound weights over my head, and lots of walking. I fight on and I'm just trying to stay healthy until the time comes for stem-cell transfusion (Bone Marrow Transfusion).
So all those people who tell me I look good or great, I get it now, and I thank you for your patience. I'm still working on getting better, be I'm not nearly satisfied with my progress yet.

Thursday, February 18, 2010

Home ain't so easy...

It has been a few days at home, and I'm still not fully acclimated. It seems that the freedoms of being home are costing me a bit more than they used to; I have a hard time getting low and getting back up. Which makes the lower cabinets nearly out of reach. And feeding the dog a spilling that she doesn't mind cleaning up.
The trip I took yesterday to the clinic for my Campath shot went fairly smoothly, but just being outside for just a few minutes stole my breath away. that was a shocker. I'm hoping that most of my trips to the clinic go so well.
Leslie is back from Detroit and helped me take my first my first shower since I don't know when. It felt so wonderful to have warm water all over me. Now it just feels good to be clean with clean hair and a shave. I feel nearly human.
Now i'm trying to work on my muscle strength, but I'm tired from just walking from one end of the house to the other, so it's very difficult to find the energy. I just want to be stronger! I look in the mirror and see the results of my long nap; my frame shows but my muscles are gone. It's plain odd to see myself in the mirror, as the hospitals are not full of them.
The food here at the house is much better; Christian cooked for me for two days and really hooked me up with solid food that I needed. Tonight Leslie is cooking, and I sure like home-cooking better that restaurant foods. I'm looking forward to tonight's meal. and the chocolate shake I'm about to make right now!
What I like about being home is the sleep I get. I like the comfort of my my couch. I like having my dog nearby, pretending she's protecting me. I like being able to watch the sun rise. I like having clothes to choose from and wear, even if they take a half-an-hour to put on. I like the 'smell' of home. I like the smell of cooking in my kitchen. I like the warmth of the radiators. I like the coolness of my own sheets.
I like being home, It's just more work than I remember. I'm very glad to have so many good friends to help me out and pitch in around this place.

Tuesday, February 16, 2010

Reunited

video

Home Again Home Again, Jiggity Jig Jig

Well, I'm home again. It is extremely comforting. And a bit overwhelming. This house is huge, with so much walking required; to answer the phone, door, nature's call, to fetch myself water, etc. Regular stuff tires me easily.
What I was looking forward to was a nice hot bath so I can finally feel clean-clean. So I filled the bath, and started taking off my clothes. When I was fully naked, I was too tired to get in the tub with my weak muscles, and would have been too humiliated to ask for help to get out of the tub, because I certainly would have needed it. So I was stuck with the standard wash down, got some new clothes on and then I went to bed, falling asleep faster than I can ever remember; my bed was so comfortable! Oh sweet queen bed. I slept with my feet elevated and I slept so long my feet are nearly normal-sized this morning. Hoo-ray!
Today is Leslie's grandmother's funeral; I wish I could by her side, as I'd like to give her the support she needs. I am stuck here, though, waiting for my nurse to come by and take blood, give me instructions on how to be home and yell at me for walking around with just socks on.
Today my dog comes home; I just hope I can contain her energy.
maybe I will harness some of that energy and pick through the huge pile of stuff accumulated while I was away.

Sunday, February 14, 2010

I'm so excited!

Here it is, my last full day (I hope) in the hospital. Yesterday, they took me off the worst of my drugs, Heparin. Every shot burned, and some nurses put that in slowly. Well no more of the worst! It is a blood thinner, and I was told that my movement (walking around) gave them reason to stop the treatment. Now, if could only get my feet down to normal size. they are still balooned and today they are painful from yesterday's walking.
I am nervous and curious about going home.
How often should I leave the house? Should I wear a mask when I do? How much will the dog affect me? When can I eat raw veggies again? How soon do I come back for the outpatient treatment?
I look forward to long bath, a good shave, and seeing my dog.
Leslie will be near Detroit, speaking at her grandmother's 'wake'. I am sure that the girl needs a better year than the one she's having.

Saturday, February 13, 2010

Almost Home

So they (the doctors) are trying to get me home on Monday. They have been planning with home health for delivery of oxygen, suction and I am sure other things as well. All of this seems unreal, as I've only been 'awake' for two weeks now. I've had to relearn to walk; relearn how to type; relearn how to use the phone.
Walking is the hardest and takes the most out of me, but it is funny to see nurses faces as I walk down the hallway for exercise; it is as if I was on a catwalk parading some nice new outfit designed by Coco Chanel herself.
Yesterday, Friday, they removed the dialysis tube from my neck. Which, Leslie tells me, was about 1cm thick.
The bandage just fell off in my sleep, and I was surprised to find a very small incision.
The doctors just came in to look me over. They are giving me Lasisk to help me remove extra fluids in the body, especially in my poor fat feet. When the fluids get down, I go home.
I wish I had those GI Joe feet that just pulled off and you could replace them.
Poor Leslie won't be here when I am released. Her much-loved grandmother passed away and she has to drive home to be near her family. I'm still stuck here in the hospital, but hopefully, on her return, I will be home and she can meet me there.
We shall see.
-Posted by Mark

Wednesday, February 10, 2010

The BEST news yet!!!!!

Feb. 10, 2010

First, I have to say I cannot even wrap my brain around how fast everything is happening!!! Check THIS out you guys:

1. Mark's chest tube was removed today (hooray!!)

2. Docs said he'll most likely be going home on Monday (holy crap!!!)

3. A smaller trach was put in today to replace the larger one he had in, and in two weeks will be totally removed, and the hole in his throat sewn up!!!

4. MARK'S SISTER JEANNE IS A FULL MATCH FOR HIS BONE MARROW/STEM CELL TRANSPLANT!!!!!!!!!!!!!!!!!

I'm shaking, I'm so happy!!!

TONS of Love,
Leslie & Mark

Tuesday, February 9, 2010

Just sharing a photo with you...

I meant to post this shot of Mark in the entry that I posted earlier today but got sidetracked. Here it is...I call this one "Mark Vancura: Kicking TPLL's ass one leukemia cell at a time"




(even with that feeding tube, he's just so handsome!!!)

A New Day, In (yet another) New Room

Tuesday Feb. 9, 2010

The first non ICU room they moved Mark to was smaller than small; and with between the number of visitors he gets, the cot they have in there for me, and any machines...it was a tight squeeze in 672. On Friday night they moved us just down the hall to TN659, MUCH MUCH bigger.

Here's what's up:

Mark has been doing so incredibly well that any free time I have, I'm really just spending it with him, so I've been a little lax on the blogging. The rate at which his condition is improving has definitely been sped up, (mostly by him and his sheer determination). Both of his catheters have been removed, all but 1 IV has been removed, (he's still got his antibiotic going, which is actually part of his chemo/bio-therapy treatment), his feeding tube has been removed, and at this point, the only tube he's got left is the chest tube which they've been talking about removing within the next couple of days.

His doctors are very excited about his progress, even Dr. Odenike did a little happy dance when she stopped by to visit a couple of days ago. Everyone is really happy. Best news of all? His white count, (at last record), was at 11. Reminder: a "healthy" count is anywhere from 3.5 to 11; so we're well on our way!!! The plan now however, is that the oncologists plan on "bottoming out" his white count before his transplant, so that they're basically working with a totally clean slate. And the lower his white count goes, the more susceptible he will be to outside illness and infection; so we all have to be extra diligent in keeping healthy if we're going to be around him.

Once his white count is where they want it to be, he'll have a bone marrow biopsy done again to test to see if any leukemia cells are still present. If they are Campath continues until it's eradicated, once that happens, he will most likely be sent home for a handful of days to rest before his transplant. As one of his oncologists explained to me, "he will be very very weak, and his immune system so compromised, we'd rather he be at home than in a hospital where cause for infection is greater than in his own living space. Once he's at home for a handful of days, and rests and gets stronger, we'll bring him back in for the transplant."

They've informed us that once he does go back in for the transplant, that he'll definitely be in the hospital for a sustained amount of time; (an exact amount of time isn't possible to predict now, this depends on many different factors).

As we stand, He's still getting his dialysis treatments; but his kidneys are definitely working, just not yet at their full capacity. (The docs expected this). They're a very slow organ to kick back in to do their job; so it'll be some time before we see any significant progress with them.

Mark's Campath schedule has gone back to the Mon, Wed, Fri doses, rather than the every other day dose. He's also now receiving physical therapy a few times per week to get his strength back; which he has quite a bit since leaving ICU, and it's getting increasingly better each day. You guys should see him, he's walking around his room now, putting himself in chairs, and exercising his legs on his own. It's pretty awesome.

His lungs are so so so SOOOO much better too!!! He's made it through full days without the use of oxygen at all, all the while maintaining a mid 90's pulse ox!!!! How's that for progress??? He's also dealing with his trach very well too; his nurses come in to suction him several times a day and he uses his little "speaking" attachment on the end of it sometimes. I can tell it annoys him though, so most of the time, he just pops it off and covers the trach with his finger to talk to you. (Note: lots of people have asked me if he sounds like that character on South Park. LOL. No, he does not. He's got his own voice, no mechanical-sounding voice at all, it's Mark's voice, just with slightly less volume so you have to be kind of close to him to hear). :)

The trach's days are numbered I'm assuming as well, so everyone keep your fingers crossed and positive vibes coming...he's WELL on his road of recovery.

Once again, thank you to everyone that's stopped by, brought food (Jeanne Ward, you are an angel), sent positive texts and calls, and emails and everything else. You're all very much as in our hearts and thoughts as we are in yours. Thank you.

Lots of love to you all.

Very Sincerely,
Leslie & Mark
xoxoxo

Friday, February 5, 2010

PEACE OUT ICU!!!!

February 5, 2010

Mark has been moved to a regular room on the oncology floor. GOODBYE ICU!!!

Everything is moving along beautifully. Mark is getting stronger every single day, his lungs are getting progressively better, his white blood cell count is in the low 20's, he's eating solid food again, and isn't on any pain killers or goofballs of any kind!!!

They transported him to the new room by bringing a "regular" bed to his ICU room, and moving him that way...and Mark tipped the hospital transport guys when they dropped him off...cuz that's how he rolls.

;)

His new room number is TN672

I slept next to him last night, and while he didn't sleep a whole lot, he was peaceful and comfortable (and I caught him reading through the blog in the middle of the night too, which I think finally exhausted him after seeing how long winded all of my posts are. HA!). I can't describe how lovely it was to sleep next to him again, holding his hand all night. Personally, I slept like a baby for the first time in a while. His pulse ox the whole night hovered in the mid 90's. When I got up and left for work this morning, he was at 100 for his pulse ox...(AWESOME!!!!)

Today's goals:
-Physical & Occupational therapy (strength building, i.e. sitting, standing, etc)
-Solid foods
-Campath shot
-Chest xray
-Blood count watch

GOOD STUFF YOU GUYS!!!

Now everybody together, on the count of three, 1-2-3....EXHALE!!!


Love to you all,
-Leslie (& Mark)

Wednesday, February 3, 2010

BEST. DAY. EVER.

Feb. 3, 2010

HOLY. CRAP.

Just got home from the hospital, and um...what a difference a day makes.

Mark's current update:
He's off the respirator, off of all pain and amnesia meds, off of dialysis, off of heart and blood pressure meds, and he's speaking again, WITH his own voice. He has no memory of the last three weeks. Oh and? His white blood cell count is in the low 30's and keeps moving downward. Quite possibly my happiest day of 2010...yet...!!! He's kicking cancers ass y'all!!!!!

Best moment of today: walking into his room, seeing the big smile on his face, and then walking to his bed and hearing him say in his own voice..."I love you Leslie...I've been waiting all day long to say that!!"

I had no idea they were taking him off of the respirator today, no idea they were stopping ALL of his goofball meds today...I would have been there had I known...but DAMN what a great surprise.

The occupational therapists even had him up and out of the bed today, practicing sitting and standing and exercising his legs.

I am overwhelmed with total happiness and love, and I am at a loss for words right now...so for now, I'm going to leave it as it is...

Good night to you all. As Dino says to me every night we leave the hospital, "tomorrow is another sunrise"...

Tomorrow then.

-Leslie

Good Stuff, Good Stuff, Good Stuff!!!

February 3, 2010

***(1 month ago today, at 3am, Mark and I were driving to the Emergency Room at Illinois Masonic Hospital thinking he had a torn muscle in his back. I can't believe how much has happened in such a tiny span of time)***

While a lot has happened since Sunday, things are still moving slowly, though what's fantastic is that they continue to move in a positive direction.

Mark has been so very aware and communicating and interacting with everyone. He's still on Versed (the goofball medication that makes you see things and forget pretty much everything), so while he's communicating, it's getting increasingly more frustrating since he has little retention. As his body gets better, and his lungs become even stronger, he WANTS to communicate more, but they've had him on a pretty steady stream of the goofballs so it's been making things a little difficult. I had a chat with his doctor about why he's still on the Versed, (which btw has nothing to do with pain killing and ONLY makes you forget stuff and makes it so you're not "combative" with hospital staff). Sigh. His restraints have been off of his wrists for a couple of days now, and he hasn't tried to pull anything out again. From my perspective, he's okay, and isn't fighting anymore and I mentioned this to the doc, to see if we could start trying to ween him off a little. Since our conversation he's been titrated down from 5mgs to 3mgs, to (just now I received a text from Dino, who is at the hospital with Mark now), nothing. The Versed has been turned off!!! This is AWESOME news!! Everyone cross your fingers that as he becomes more aware and the Versed fog starts to clear, that he doesn't start fighting with the staff again. I'm pretty positive he won't.

SO...we figured out why his heart rate was spiking so incredibly high and then falling so incredibly low so often. Mark had fluid around his heart, which is common with his type of cancer. Yesterday around 3pm or so, cardiology took him in for a pericardiocentesis, which is a procedure where they stick a needle into the membrane around his heart that has the fluid in it, and they remove it. They removed about half of a liter of fluid, which they've sent to be tested to see how many cancer cells are present in it. When he got back to the room, his vitals were so steady and fantastic!! Mid to upper 90's for his pulse ox, and around 100-105 for his heart rate. He's totally off of the blood pressure medication they had him on and he's been maintaining a healthy range ever since. They've taken him off of the constant dialysis and put him on treatment dialysis, where they administer it for three hours and then he's off of it for three hours, thus helping to basically kickstart his kidneys into doing their job again.

His vent settings are pretty awesome!! He's still bouncing between a 9 and a 10 peep, but they've moved him down to now 50% oxygen...(HAPPY DANCE!!!), he's got to be at a 5 peep and 40% or less oxygen for them to consider taking him off of the vent. He's on his way.

Last night he was sitting up in bed when I got there and was smiling and joking around. He's of of "droplet protection" and you don't need to gown up and glove up anymore to be in his room; this also means that his door can stay open. All night long last night, when nurses would walk by his room, they'd pass by with big happy smiles and raised eyebrows instead of sad faces and pitying stares. It was great! One nurse saw me in the hallway and said "Leslie, he's looking great!! I'm so happy for you guys! He'll be out of here in no time, I bet they move him to a regular room soon!" Simple words, but it made my night.

We've been trying to work with Mark on him writing down for us what he wants and what he's saying. It hasn't really been working well because of the Versed. He knows he wants to tell us something, but can't speak it, so when we put the dry erase board in his hands with the marker, he gets this look of intense concentration and is trying so damn hard to write something to us, but not a lot comes out yet. Jimmy did get him to write his name though, and that pretty much kicked ass. (See photo below).

The best news??? HIS WHITE CELL COUNT IS FINALLY MOVING IN THE DIRECTION WE WANT IT TO!!! Dr. Odenike, (his superhero oncologist), and her Fellow, Dr. Ericka (can't remember her last name), decided to stop giving him his Campath in his stomach and have been giving it in only his shoulder, and this appears to be the trick!! His white count was spiking really high for a bit last week, but then all of a sudden we started to see a huge drop, which is AWESOME!!! (See the chart below).

So everyone, keep your fingers crossed, and prayers coming, and positive vibes sending for this upswing in Mark's condition. I'm so excited I can't even explain. I feel like I want to run out into a field and do spins. :)

Here are some photos I put together for all of you. The first is Mark's white count chart I threw together, second is a photo and bio for Dr. Odenike, third is a triptych comparison of his chest films...last is the whiteboard that he wrote his name on.