Wednesday, March 31, 2010

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.

Friday, March 26, 2010


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 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)

Tuesday, March 23, 2010

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.

Sunday, March 14, 2010

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

Saturday, March 6, 2010

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.