A Screwy Blessing In Disguise & Random Roadtrips

Monday April 12, 2010

Hey All, Leslie here. Man, do I have some interesting updates for you all.

Okay first and foremost, Mark is doing so incredibly well. His doctors actually have postponed his admit date to April 19th, and his actual transplant will not happen now until April 26th. The week of the 19th he will begin the hardcore drug treatment, "pre-op" plan, and yes, we just found out that he will be losing his hair. They are giving him 1 shot, of 1 drug, only 1 time. It's called Melphalan, and he'll be getting it on the day after he's admitted. It's apparently so potent, it will definitely kill his hair follicle cells too. He's surprisingly okay with this, as he's planning a mohawk. You think I'm kidding. He wants to dye it blonde. I promise you, I'll take pics.

So...here's a bit of my news: I was laid off from my job, (of 12 years), on April 1. I'm finally pretty okay with it. I get to be with Mark as much as possible as he goes through this, and I don't have to worry about my PTO days or any other "day job" nonsense. Yes, I was completely blindsided and in shock. Mark totally took care of me and has been absolutely wonderful with my ups and downs in dealing with it. It really is like a death, especially after you've been at the same company for so long. Thankfully, I was taken care of with a severance and am now on unemployment, as I figure out my next steps. I knocked my resume into shape, after not having looked at it for oh...a decade or so (I know, bad!!), and I realized that I actually do have a LOT of marketable skills and that there really is no reason for me to be freaked out. My initial panic and anxiety had me convincing myself that I'd never find another job ever again...(my flair for the dramatic works in bad ways too...lol). I'll be okay, I will land on my feet. I always do. Thank god for the amazing support system I've got around me. Thank god for Mark. So, I'm trying to believe this was my screwy blessing in disguise. The possibilities are endless, and this is truly a once in a lifetime kind of thing, so my goodness am I going to enjoy this. I have so many ideas for what I'm going to do, and I can't wait to try them all. In the meantime, I get to be close by the man I love as he travels through one of the most difficult times in his life. Thank you universe for forcing me out of my comfort zone in order to embark onto better things.

In the time I've been laid off, Mark and I have had so much fun. We've been to two Sox games (yes, he's a die-hard Cubs fan, but they weren't in town for opening week, so if Mark has any chance to see baseball, he's all about it, even if it is the Sox). His doctor even cleared it that he could go, that it was alright that he was around that many people because it was in the open air.

We went to Cascade drive-in movie theater to see a double feature, (Clash of the Titans & Cop Out). Since he can't be actually "in" a movie theater with tons of people around, a drive in was perfect.

Our next "no day jobs" adventure, had us at Hawthorne Race Track to see the Illinois Derby. I won $17. ;)

And the best part? As I type this, I'm sitting on the back porch of a Palm City, FL home, staring out into a beautiful lake, in 75 degree weather. When his appointment was switched, we decided to hop into the car, (we brought Godiva), to take a spontaneous road trip to visit his brother Pat and his sister-in-law Cheri before he went in for transplant. How cool is that?? We've had a blast driving down here. We stopped in Nashville, TN and saw Music City and had some traditional Tennessee bbq. Next, we headed to Savannah, GA and hung out a bit on the River Walk, (what a beautiful city. I would love to go back and spend more time there). Our next stop was in Melbourne, FL where we stopped at Bonefish Willy's to have some fresh oysters & beer...right on the water,(it was delightful). Then, we hightailed it to Palm City, FL to surprise his brother. Cheri, (Pat's wife) knew we were coming, but Pat did not so it was a huge surprise to him to see Mark walking up to his front door with Godiva and myself. It was a pretty cool moment. After only having heard (and read) the crazy stuff his brother had been through, I'm sure it did Pat's soul good to see Mark, beaming smile and all, walking up his front porch to greet him. I personally got a bit choked up to tell ya the truth.

We hung out last night with Pat & Cheri and Mark made a delicious dinner of fresh shrimp & steak, with asparagus and a caprese salad. The four of us drank wine and played poker and laughed...a lot. It was truly a lovely time. Pat & Cheri's house is so pretty and homey and just plain relaxing. Godiva & their dog, Bailey get along for the most part, aside from a few tense moments, it's been totally fine. Godiva almost immediately went for a swim, and I got it on video, (trying to figure out how to get it uploaded here...will post as soon as that happens). :)

I think today's plan might either be golf or the beach, not sure...who cares though, we're on vacation right? Mark and Pat and the dogs are fishing off of the dock now, what a lovely time.

Will keep you all updated as the days get closer to transplant. Mark's in amazingly great spirits, and he is still in his ass kicking mindset, which I believe makes all the difference in the world.

Love to you all.

-Leslie & Mark

Some pix and a video:

Mark at one of the Sox games we went to, wearing the Rockies windbreaker that his dad sent him from Vegas:


Mark, as happy as can be after eating some fresh oysters and drinking some beer at Bonefish Willy's in Melbourne, FL:


Me, (also after oysters), at Bonefish Willy's in Melbourne, FL...good shot by Mark, with his cell phone!!:


Mark & Pat, all smiles!!

Spring Break!

I'm on Spring Break.

From the hospital, from Doctor's appointments, from Chemo treatments and from the brutal Chicago winter. I don't have to return to the doctor until April 7th; Such a long time, I having a hard time comprehending. So I'm keeping this here post short, because I'm about to go outside with the dog in the sun and sixty-plus degree temps.

I leave you with this picture of my health.

GREAT NEWS!!!!!

Friday March 26, 2010

What a way to kick off the weekend you guys!!!

I just got to my office and received a text from Mark. He's at his Friday morning doctor's appointment. Last Friday was his 2nd bone marrow biopsy, and so we've been waiting all week to find out what's up. His text said "the bone marrow biopsy shows no signs of the disease at all, I'm considered to be in "total remission"..." Which means that he is totally greenlit for his transplant to happen asap.

Mark's sis Jeanne has gone through her barrage of testing and we're just waiting to hear that she's ok and healthy too; and once that happens, they'll harvest the stem cells from her blood, and Mark will receive them asap. Then, we'll be counting the days that we're "out from transplant". I'M personally counting the days until I can start saying (and typing and texting) "Day 1 from transplant"...(and so on, and so on, and so on).

Today though everyone...is a milestone. I believe it's something to celebrate and be very happy for. Today we focus on the positive, we give thanks for the good things that have happened, and we keep moving forward.

Love to you all.

-Leslie (& Mark)

Picture Proof: Feb 8th and Today

I feel awesome. Okay, I feel awesome every other day. It seems as if I feel too good, over-extend myself, then just crash in a tired heap the following day. Then I feel great again. Like today, I feel as if I never had Leukemia and will continue to feel super until I try to open a soda or climb more than a flight and a half of stairs, at that point I will be reminded that I a weakling. So I'm drinking coffee, OJ and water while remaining at home.

I cannot say if this is "remission" from Leukemia, but I sure feel "normal". Which makes me dread the near future all the more, because I'm not really looking forward to more time in bed, sick with flu-like symptoms, for three weeks. I better get my reading list together, and quick.

My bloodwork results are quite shocking to see in comparison from just two months ago. Freakin' amazing stuff, really: My white blood count is down to 3.7, from 114. My red blood counts are still a tad low, as is my hemoglobin. My lymphocyte numbers have dropped to the low end of normal, and I'm rockin' the health-o-meter with my lowering of my resting heart rate with each visit to the clinic.


Tomorrow I should be getting back the results from Friday's biopsy of my Bone Marrow, which left me with a sore ass over the weekend, and my number one comfortable position is the ram-rod straight sitting position, with perfect posture. My readiness to slouch has been hampered by a twinge of pain as I try to slide into what used to be comfortable. Now it's sit like a proper englishman or go lay down. Thank the stars that only lasted a few days and now I just feel a bit bruised in the behind.
the anxiety is still building towards the transplant and all that leads to it, I'm hoping I can get through this without too much complaining and whining and come out the other side ready for golf, barbequeing and everything else summer brings. Like Chickenfest. Can't wait for that, but I can't plan too much because of the date unsuredness.
More later. Hopefully tomorrow I will being you good news from my marrow results.

i'm trying not to fool myself

This past week, I've gotten over the baby steps and made some great strides in wellness. I've gotten the trach tube removed and watched the hole in my throat go from a half inch wide to smaller than a cocktail straw in the opening. I've gotten over the pneumonia and started driving again. i've become comfortable in the kitchen again, and ventured down full length staircases. I have picked up a gold club and made swings without pain. Yes, I'm bragging. Geez, you would too, if you were in a coma two months ago. I'm starting to feel good, and I'm riding a stationary bike for cardio and leg strength. Perhaps i'm feeling too good, because I forget that I'm actually very sick and tend to over extend myself and then sleep for too many hours, worn out from what used to be a half-day's activity. Perhaps i'm feeling too good because I forget that I am to avoid crowds of people and illness centers such as the grocery store. Then i remember that I will have to be confined to a hospital for three weeks after my upcoming transplant and that allows me to enjoy these freedoms that i have now and prepare myself for the normal life that I expect to have in the upcoming summer.
Whatever sort of prescription plan that I'm on, courtesy of my medical team, with the Campath leading the way, is working wonders for me. My blood counts are that of a healthy individual, extremely healthy even. I just have to remain healthy for these next few weeks so I can make it through the hell of feverish days stuck in a hospital bed.
I'm going to let Leslie chat at you for a minute now:

Hey everybody!!! Wow, where do I start?? We haven't updated the blog in such long time really only because so many happy, positive things have been happening, and so quickly!! (Hard to keep up). This past month has been awesome. Mark's strength is just coming back so quickly, it's quite astonishing. I'm so proud of him. We even had our first restaurant dinner this past week. We went to Bella Notte on Grand Ave. and went on a real live date and everything!! It was awesome because we chose to do that on a Wednesday night so that it would be less crowded. Mark even drove; and it was the first time I've sat in the passenger seat, while he was driving, all year. I got to hold his hand again, while he drove, and we talked about our day, (one of my favorite things). It was really a nice, lovely, precious moment.

All week last week, he's gotten up with me in the morning, and has driven me to the el stop; and to see him so excited and happy to do that, is so cool. "It's an independence thing" he tells me. That's fine with me. As long as he can prove to me that he's not in any pain or exhaustion while doing it, I'll support it. ;) I try my best to keep him out of grocery stores too; but man, it's tough to do with this guy!! He LOVES being in grocery stores!!! I think it's the cook in him...well, I know it is. He loves being at close range of "great and interesting ingredients" at any given time, so I try my best to keep the house stocked with "interesting ingredients" so he can do his culinary creations as he likes. At the beginning of last week, I stopped by Whole Foods (a.k.a. "Whole Paycheck"), to buy these interesting ingredients so that I could keep as many of them as organic as possible (part of keeping people in cancer treatment healthy is consuming as organically as possible). While sorta pricey, it was great fun because my only instruction from Mark was "just buy anything you think looks good or interesting, and I'll come up with some way to cook it for us". How cool is that?? All in the last week he's made a delicious pot roast and root vegetables; grilled salmon with pineapple and yellow rice; and an awesome bbq'd pulled pork loin on a fresh french roll with outstanding mashed potatoes and a seared tuna steak with brussel sprouts...oh AND grilled pork chops with fresh fennel and apple. I mean, this dude can throw DOWN in the kitchen!! I think the cooking and the kitchen keeps him sane...and very very happy. How lucky am I that I get to reap the rewards of that?? It's pretty sweet.

So yes, we are taking advantage of this "healthy time"; and are gearing up for the journey of the transplant. The docs say it will happen within the next month. We're not totally sure when exactly; just within the next four weeks or so. So every single moment of strength, and happiness and any amount of laughter and levity is what's keeping both of us on track. And it's so nice that the trach's gone, the tubes are gone, the wound that the chest tube left has healed nicely, and I'm free to lay on him when we fall asleep without hurting him. You can bet the farm that those are the moments that I make sure to notice and appreciate more than anything.

We're on our way everybody. Thanks again for all of your kind words and encouragement. ALL OF THEM mean the world to both of us.

Love to you all.

-Leslie & Mark

Update on a Sunny Saturday

This week has been at bit rough on my psyche, body and I'm sure my friends as well. I found out Monday that I contracted pneumonia again, only to be told that it was half-expected with the Campath wreaking havoc on my immune system. So I just had to go along with the standard plan of rest, lots of fluids and keep on the antibiotics that I'm already on. Thursday was my only day away from the hospital, but I was far too wiped out and tired to actually accomplish much. Then Thursday night, I got happy again.
In creation, I find happiness.
Meaning that, I find happiness when I create something. Thursday night's case was a simple dinner; yet still a creation from raw materials. And in that happiness, I find strength to heal myself and feel less sorry for myself that "I'm sick" "I'm tired" and the other whines I generate while I'm sitting on my now-bony ass. You'd think that since my ass is bony now and it hurts to sit on things that are not extra cushioned that I would actually get and create, but, seriously, I was tired. And you all know, I am sick. But I am not incapable. As a matter of fact, I can now dress myself without assistance. Quite a proud moment for someone that just re-learned how to walk. And(!) I can wear shoes now that my feet don't swell up to twice their size anymore. Top all that off with two good things that happened today: I put on jeans (actual pants!) for the first time since the 3rd of January. Of course, Leslie had to dig around in the basement for a pair that would actually fit me, but she managed to located the one pair I had stashed for that occasion when I would drop 40lbs in two months while undergoing treatment for leukemia. Good thing I plan ahead like that.
The other good news is my insurance company has granted coverage for my upcoming Allo Stem Cell Infusion Transplant, which I found out from a letter in the good ol' US mail. So the Doctors can really start moving forward on that front, and I just have to remain healthy until the procedure goes down.
Now if I can only get strong enough to start actually creating more things than dinners, although my dinners do get plenty of compliments, I'd sure like to create more things that last longer than a few hours. Like those T-shirts I promised Bill S. and the rest of Jordan Youth. Funny how a near-death experience can make someone less of a perfectionist; what seemed to me to be an error on the printing screen in December certainly would be printed today and accepted as part of the handmade charm. Punk Rock live on.
Rock an Roll y'all, Rock and Roll.
Oh! and for those that think it was "warm" today in Chicago, I can tell you with all honesty that it really wasn't. I lasted ten minutes outside before I was cold and I still had a winter jacket on! remember this: 50º is cold. If you believe that it is not, go ahead and set your thermostat to 50º. I'm telling you COLD. Sunny afternoon or not.

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.

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

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.

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.

Reunited

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.

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.

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

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

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

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)

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.

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 him...it 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 hey...it'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.

-Leslie

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 need...so 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.

-Leslie

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 5...so 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 there...it'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.

-Leslie

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.

UPDATED BLOOD COUNTS:

JAN 20, 2010
2:00AM
WHITE: 96.9
RED: 3.24
HEMOGLOBIN: 10.3
HEMATACRIT: 31.6
PLATELETS: 126

2:00PM
WHITE: 96.4
RED: 3.10
HEMOGLOBIN: 10
HEMATACRIT: 30.2
PLATELETS: 118

JAN. 21, 2010:
2:00AM
WHITE: 98.1
RED: 3.23
HEMOGLOBIN: 10.1
HEMATACRIT: 31.6
PLATELETS: 134

2:00PM
WHITE: 106.3
RED: 3.03
HEMOGLOBIN: 9
HEMATACRIT: 29
PLATELETS: 132

JAN. 22, 2010:
2:00AM
WHITE: 97.8
RED: 2.96
HEMOGLOBIN: 9.2
HEMATACRIT: 28.7
PLATELETS: 129

2:00PM
WHITE: 108
RED: 2.91
HEMOGLOBIN: 9
HEMATACRIT: 30
PLATELTES: 129

JAN. 23, 2010:
2:00AM
WHITE: 119.2
RED: 2.88
HEMOGLOBIN: 10
HEMATACRIT: 30
PLATELETS: 127

(2PM RESULTS NOT BY YET)
(CAMPATH shot scheduled for tonight at 9:00pm)

Love to all of you,
Leslie

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.

-Leslie

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)...so..I'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).

BLOOD COUNTS FOR JAN. 18, 2010:
2:00AM
WHITE: 81.5
RED: 3.06
HEMOGLOBIN: 98
HEMATACRIT: 30
PLATELETS: 113

2:00PM
WHITE: 84.3
RED: 3.20
HEMOGLOBIN: 10.1
HEMATACRIT: 31
PLATELETS: 124

BLOOD COUNTS FOR JAN. 19, 2010:
2:00AM
WHITE: 86.5
RED: 3.17
HEMOGLOBIN: 10.1
HEMATACRIT: 30.8
PLATELETS: 119

3:00PM
WHITE: 98.1
RED: 3.12
HEMOGLOBIN: 10
HEMATACRIT: 30.3
PLATELETS: 125

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

Chest Xray:

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 days...so 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 cancer...so 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:
WHITE CELL COUNT: 3.5-11
RED CELL COUNT: 4.47-5.91
HEMOGLOBIN: 13.5-17.5
HEMATACRIT: 41-53
PLATELETS: 150-450

MARK'S BLOOD COUNTS ON JAN. 15, 2010:
WHITE: 96.6
RED: 3.1
HEMOGLOBIN: 10
HEMATACRIT: 30.4
PLATELETS: 117

MARK'S BLOOD COUNTS ON JAN. 16, 2010:
4:00AM
WHITE: 141.2
RED: 2.39
HEMOGLOBIN: 8
HEMATACRIT: 22
PLATELETS: 157

(more blood counts were taken then at 1:54pm)
WHITE: 96.2
RED: 3.11
HEMOGLOBIN: 10
HEMATACRIT: 30
PLATELETS: 133

MARK'S BLOOD COUNTS ON JAN. 17, 2010:
4:00AM:
WHITE: 98.4
RED: 3.25
HEMOGLOBIN: 10.1
HEMATACRIT: 31
PLATELETS: 121

(2:00PM):
WHITE: 110
RED: 3.2
HEMOGLOBIN: 10.5
HEMATACRIT: 31.8
PLATELETS: 122

CAMPATH ADMINISTRATION:
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.

-Leslie

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