Getting prepped for the LA

So here I am trying on the short pants. I may not need them.
I dont want to blind any astronauts with these pasty sticks.

I will be posting pix and text from my LA visit!
Stay tuned!

Just an update. Nothing new to report!

The only to report at this time is a wonderful time on staycation.
I've been hanging around, drawing and strumming the guitar. I've taken the dog for long walks and enjoyed sleeping late. Slowly I've been doing projects around the house that have been in the cobwebs of my mind and preparing myself to work harder to get this beast on the market and sold, thereby freeing me up even more than I am now. Certainly, my future is wide open from here, as I feel like a brand new man, with great energy and fresh ideas. to quote Ministry: "I found myself in love with the world", a feeling I hope never dies. I'd like to start doing even more things for myself, and become an better individual every day. I feel that I am well on my way to shiny things, and everybody loves shiny things, don't we?
That is all for now.
Thank you all for your support while times were hard, and for all the smiles and warm receptions as I healed and got better. I am humbled through all of your showers of love. I'm trying to live up to the love I have received. It's quite a lot!

I can't sit still!

I am so giddy at this moment that I'm having a hard time sitting still long enough to type. I know, it has been a while since I've posted. The delay was caused by a deep Chicago winter. Nothing more, nothing less. A week after my last post I had a bone marrow biopsy in it's routine place, the next one will be in three months or so. I was to get back results from this biopsy last Wednesday, the 2nd. Except the clinic was closed due to some 20+ inches of snow. Which forced the doctors to delay my appointment one week until today.
Are you putting this together yet?
My blood counts are still "pudgy". (Doc's word, not mine)
WBC: 1.8
Hemogolobin: 10.4
Platelets: 77
For me that's not pudgy, that's damn near normal! Save the WBC, that is. Either way, my counts continue their slow climb from the forced zeros of last April. As for how I feel, well, I feel great. I even managed to get some cross-country skiing in, an exercise I was concerned about because of it's great aerobic activity. I was gassed pretty good a couple of times for sure, but I still had a good time, and wasn't completely wiped out. I'm not saying I didn't "wipe out", because I did do that three times. All part of skiing. No yard sales, though.
The blood counts are not the source of my giddiness however.
The overjoy stems from the doctor informing me that I may travel, return to work and do just about everything I wish to. WHoo Hoo!!!!! I still have to avoid sick folk and children, but I can get back into a normal life instead of this weird lifestyle of hermitage and sun avoidance. A little bit of travel, then it's back to work!! I'm very excited and revved up like real-life Hot Wheels® car. My skin may just split from trying to contain this energy! How about another exclamation mark?!?!
Plus, Plus, Plus!
I don't have to return to the clinic for two months. Two Months!!! That's a summer vacation to me. After every week for as far back as I can think right now, two months seems an eternity. An eternity of hoots and hollers!!!
I would be remiss if I didn't take a moment here to thank all of you for your support and friendship, especially Jaymce and the baker. Without your assistance, I still wouldn't be talking, typing or even breathing. I thank you all with my whole heart and being.
Oh my goodness, where do I go and what do I do next?
The world is my oyster and I plan on slurping it up with great gusto.
Somebody get this man a Schlitz!

A Milestone of sorts.

Today marks the end of one year.
One year after I took one too many steps towards the edge of life, one too many away from the oxygen I was being given and one too short to reach a nurse.
I am going to use today to reaffirm my own strength, the benefit of great doctors and nurses and the value of being loved and loving right back.
It seems strange going through this reminiscence without Leslie nearby, as she was the voice for me when I couldn't communicate and the pipeline through whom I received all of your messages of support, love and concern. Although I am currently cancer free now, I can see that my life will always be affected by the nasty disease that took me into a brief death last year, early in the morning on January 15th. This disease has changed the pattern of life that I knew, changed my direction, changed my outlook, and changed nearly everything I thought I knew.
I thought I knew what death was and I was, perhaps, frightened a bit. My experience showed me that there's nothing to worry about, and, as I experienced (or just plain old dreamed up some scenario) that it wasn't my time to go, nor was I anywhere close to my time. So I came back for my things, my friends, my family and for my love.
Take a moment to think about what you thought you knew and throw it out. Just realize that all we have is our connection to each other, our shared experiences and nothing else. The rest of the things that occupy our lives, the TV, the sports, the food, the cars, computers, all the STUFF, don't matter at all. The only thing that matters is our feelings for one another and the time we can spend while we have it. together. When it is gone, this time thing, it's gone. Repairs cannot be made at the rest stop down the road, for all of our roads don't neccesarily follow the same route. Take care in those that matter to you and leave those that don't outside of your mind and hearts.
My heart is currently working pretty well and my blood levels are cooperating with keeping me out of the hospital and away from new blood transfusions. I'm trying to get an approval from the good doctor to return me to work. Think of that; I might just return to work soon! Of course, last fall I kept hearing, "Maybe next month" from my doctor's mouth, so I'm leery of feeling too good about what might happen and I'm trying to concentrate on what is happening. And what is happening is I'm feeling really good. I'm getting sustained good moods, high levels of activity and I can think fairly well without the dreaded 'cancer-brain' swiss cheese effect. Which makes me as good as the average employee. Of course, I fear for an illness setting in and sending me back to the hospital. I have fear about chemicals and fears about hanging out near people that may or may not be sick, I can't tell. Is that a runny nose from the cold weather or a runny nose from a cold? Did they wash their hands? Before or after they shook my hand? Purell never looked so good to me. While I wait for the doctor to give me the 'okay' and while I debate over the next step in my upside-down life, I'm concentrating on making my home neater, brighter and better. This big house is going back on the market in March, as I believe I will be able to handle the weekly showings and the general upkeep that will be needed to keep the curb appeal high. I can also watch the football playoffs with interest because our beloved Bears are involved. And that means there will be group parties with the food, laughter and fun that come along with spending Sunday afternoon with your best peeps...
Now let me tell you, this is not an anniversary to be celebrated, this year after death, no, no, not at all. I could have easily have failed in my attempts to stay alive and not be here writing to you as I am. The true anniversary to be celebrated is the one on which I received my sister Jeanne's stem cells and started life with an entirely new blood system, one that is still in 'baby' mode. (Heck, I've not even gotten a measles or polio shot yet!) That is the day the medical team calls "Day Zero", and my new birthday! Whoo-Hoo, another birthday for me! I don't deserve two, but then, Guy Fiero doesn't deserve to filmed while wielding a knife. So I get two now! This April 27th will mark my new birthday, Year One. I'm thinking a baseball game might be in order. (Big surprise, yeah?) Who knows, maybe I'll have to work that day. Werd.

Happy New Year!!!

Was that a tough year or what?
A year ago today I went to the hospital to check out a severe pain in my back, thinking that at the very worst I had a broken rib. It never occurred to me that the lump under my ribs was my spleen. It never occurred to me that the pain I felt while breathing was more serious than a bone poking into my lung. Now that would be pretty serious, yes? And who among you thinks that I would go about injuring myself in such a simple way. No, I was having serious issues with organs and blood, all secretive and microscopic. In my defense, the ER doctor was going to let me go home with a handful of Vicodin. I still have my initial diagnosis and prescribed action of Physical Therapy and painkillers, ironic because two weeks later I ceased movement altogether. I would have had a tougher year if I took the first diagnosis given to me. I was saved by the insistence of Leslie, who was my angel and my love. I can never thank her enough for that persistence, but sadly we have gone our own ways now. Cancer, which I was finally diagnosed with a few days later, takes its toll on a lot of things.
Basically, I've spent the whole year fighting cancer. Sometimes more directly than others, but it has been cancer I've been fighting, even when the current diagnosis is pneumonia, the gangster behind the scenes is cancer. My current health situation is "barely healthy", but "holding serve". What this means is my blood levels (WBC, Hemoglobin, Platelets, etc.) are just above the levels to send me back into the hospital to have IVs and hourly testing and observation. It appears that my counts are not getting into normal ranges yet, but they are slowly moving there. Slower than that. Slower still. Almost at a standstill. Little bit faster now.
This year has taught me that stubborness, willpower and patience can get you through some real tough situations. Most of the physical is willpower, which surprised the hell out of me. This year, I've had to do things physically I never even thought about. I never think twice about walking, yet I had to learn to do it all over. Many more things just like that. This year had brought me more tears than I thought I could cry, more pain than I thought I could endure and more love into my heart and life than I certainly deserve and never thought existed in such quantities. This year I've made many new connections and reconnected some old ones. I've gotten so much love this year and it has buoyed me through the extremely difficult times, when darkness seemed destined to take over, always someone stood up and lifted me up.
I thank you all for your support and kindness. I will attempt to repay you with unusually good spirits and appreciation for the life we all share.
This year has given me challenges I didn't foresee and so many, many drugs I never wanted to take. There were some days that I literally told the time according to the pills I was swallowing. At least now, I use a timer to indicate my next dosage. Without work to guide my workweek, all the days seem to run together. I use the weekly pill holder to tell me the days, otherwise I couldn't keep straight if I had taken my dosage for three O'clock when I was in the middle of my 7 O'clock dosage. Very confusing. I think I've got it down now, I hope there's nothing added to my schedule now that is taken more than once a day.
Also this year, I developed a sweet tooth. I cannot recall having one before, even as a child, but now, I go through serious cravings for sweet things. Cookies, candies and chocolate. And have I figured out some of my chocolate problems from a couple of years ago! I'm trying hard to stay out of making of small chocolates, because I don't think I need the pounds added to me. I'm rather liking my weight while it remains under 200#s. I play golf better and my clothes fit better, except for my tux. Oh yeah and that blue blazer. Okay I like how t-shirts and dress shirts fit me.
I learned this year that the patient is in charge of their care. I learned how to talk to doctors, how not to talk to doctors and how to ask for better care. I also learned that nurses are truly underrated and wonderful.
This past year I'd like to place in a lucite box. I'd like to look at it from time to time, but I would rather not live through most of it again. In a lucite box, I could see which parts are loose and fall about, which parts are solid and strong, and all of it never let out again.
Let's make this new year a fantastic one, with smaller challenges and higher rewards.
Let's make this new year one that we want to live over and over again.
Let's make it a year to remember fondly and lovingly.
Let's make it a year of prosperity.
Let's make it everything we want.
Let's beat the challenges.
Who's with me?

Merry Christmas!

Merry Christmas, everybody!

I hope that this holiday brings you everything you could want. May the weather treat you right and the food be bountiful.
I'm having a hard time getting into the Christmas spirit. I make cookies for people and that helps a lot, especially if I play something 'holidayish' in the background as I bake. So far i've made Meringue cookies, Oatmeal Raisin cookies and Sugar cookies. Tomorrow I plan on making a bunch more meringues and try to master them. Plus I to make some coffee flavored ones.
I think the reason I'm having a hard time going all Christmas is all of my longing for the end of the year; As you all know, this year has not been very kind to me. Each month has brought a new challenge, some more frightening than others. All I can do is countdown until the new year begins and things can really crank out new. Still, I fear for the return of cancer, not that there's been ANY sign of that, but little things that I think were markers as I look back on the year before I was diagnosed make me paranoid and a little bit worried. Then I have lowering hemoglobin counts and have to hope that the full-on white blood cells aren't in full-on attack mode and wiping out my oxygen-carrying cells. This trait could be a bad sign, one leading to "transfusion dependency" or something like that. Whatever it's called I don't want any part of it, as the transfusion process is not what you would call a useful way to spend time.
Speaking of transfusion, while I was in the hospital last month, my condition had gotten so bad the call was sent out to my sister Jeanne for another round of stem cells for a transfusion to help me out of my bad blood battle. She complied and the stem cells are now sitting at UCMC waiting for my next health failure. Optimistic thought process, isn't it? Well, as you know by now, my body did battle and kicked pneumonia's ass and the doctors have no idea what happened or why. So all I'm asking for Christmas is to remain healthy and stay out of Señor Transfusion's way. A transfusion sticks me in the hospital for 21 days at a minimum and I'd rather not think about that option, as last month was nearly completed in a room where everyone who came in had to wear a mask. If I can avoid that mess and cruise though a couple of months with not too many challenges, I will be a very happy man. A few of you may know, I'm a lot easier to deal with when I'm happy. Right now, just waking up makes me happy. Hell, I got happy when I cleaned the snow off of my car the other day. Of course, I didn't clean any snow off of my car all of last winter, so I was due.

Worried, I may be, but my spirits remain high, as evidenced by this photo:


Now, does anybody want a meringue cookie? I'll be starting them in the morning.
Right after breakfast.

Not quite back to September standing, but...

I saw my attending physician yesterday, apparently I've taken a whole new step in my health care: I completely ignored the "take One a day" and moved it on down to zero, in regards to this steroid I was on. This steroid was to help my blood from fighting amongst itself, in the classic Lewis Carroll version of Red versus White. Well, after reading the written instructions day after day while the dose decreased, I got to one a day, took one one day and then just stopped. After testing me, the doc said, okay, don't take anymore. Perhaps I can be in the guessing game, too.
Most of you are probably wondering how I'm feeling. To tell you the truth, this week and most of last, I don't feel sick at all. I've no longer got the pneumonia, my strength is coming back, some through workout, some through increased red cell (and hemogloblin) counts, I'm free to eat anything I choose, and do. I've got mobility in the form of car, I've got time to shop in odd hours so I miss the sick people, and I even managed to get myself two pairs of glasses after wearing a busted up pair for a year.
And what a year it was! I do believe this has been the longest year I ever lived. It started so well, I was in love, fat and happy from New Year's Eve, just floating along, then, "wham"! I'm in the hospital and I've got issues and as listed on my hospital chart "problems". What a list of problems that is! If you'd like to talk about permanent records, the hospital's got mine listed and ready for viewing. It's an impressive list that I hope none of you achieve.
Perhaps next year I will be afforded the opportunity to return to work. Maybe a travel to L.A, or even Hawaii. I do know that next year will cost me more than this past year, due to some insurance changes, darnit. Just as long as I stay out of "Lifetime Limits" and "Out-of-Network, Out-of-Pocket" areas, I ought to manage. Still, there are ghosts of plans for fund-raisers to help me with the ever mounting bills and for those planning, I thank you. I'd like to plan a golf fund-raiser, but I'm afraid we'd drink the profits right out of that one. We shall see what 2011 brings us, I'm hoping for health most of all and a hospital-free year. The odds are stacked against me, for I've still got the immune system of a baby, as I just received my second pneumonia shot yesterday, next immunization shot in two months. The odds are stacked because I live in a city where a sniffle is ever present and public transportation is a crowded and dirty affair. The odds are stacked because my lungs are susceptible to infection and I've got the golden ticket for pneumonia. I don't want this ticket, but somehow I won it and it is non-transferable. Plus, no one seems to wish to buy it off of me. Another darnit.
If anybody has any free time over Christmas break, I would welcome your company for a puzzle, a card game (cribbage, anyone?) or playing of video games. Or anything else! I'm free to travel to lightly populated places and hope that my attitude might lighten up enough to have some fun with ya. Of course, now, the museum or other places of high children content would be out of the picture.
Looking forward to next year, aren't you?

I'm not imagining things. Yet.

So I have been home for a little more than a week. Last Wednesday found me spending all day in the hospital, back in 5NE, only this time I was waiting for blood to be given to me. If you have been keeping track, these were pints 9 and 10 for the month. Which is all the blood a body can store, 8 to 10 pints. Since I've received so much blood, there was an extra step the technicians had to take (and from now on) which is to match anti-bodies in the blood and not just type. Total time waster. And on Wednesday, I was 1.) unprepared for the blood transfusion, 2.) Unaware of the extra typing that had to be done for me to receive blood and 3.) mad as hell that it took more than 9 hours to get me my blood. Add to that the four hours it takes to transfuse the blood, and I get home at midnight. Mind you, I'm still tired from my release less than 48 hours earlier after spending 19 days in a very small room. My mood on Thanksgiving was less than stellar. The food that my good friend had cooked up was uplifting, as was the testosterone filled movie. So there was that.
All this blood reception business was to insure that I remained healthy over the long weekend, so I could remain out of the emergency room and another stay at UCMC. Today I roll in for check up (on the 1st of December, hello snow!) and find that my white cells have been attacking all the red blood cells, not recognizing them as their own, rather, seeing the red blood cells as invaders and removing them. Only this is bad internally, but treatable, I'm told. This news makes me feel better because I was starting to stress about how much stairs affected me and stole my wind. Medium to long walks were wiping me out, too, but I was attributing this symptom to the pneumonia, which I am still kicking ass on. The good doctor also explained that my heart and lungs are working in fine form because I am able to get around even through this lack of red blood cells.
I just thought I was looking really pale because I haven't been outside in a couple of months, first from the cold, then from the stay in isolation, multiplied by my white heritage of Irish and Polish and whatever. No, Turns out I'm pale as paper due to lack of red blood cells. Which, HEY! Surprise!, I am receiving more of tomorrow. Hopefully without to much of a wait. I will be getting someone else to give me ride, because the treatment I've been put on starting today, is a little pill that will make me go crazy. (crazier?) A steroid called Prednisone, if you want to look it up. Combine that with the rest of my meds, and I will be seeing things and getting goofy with my moods. I've already got tripped out dreams from one of my meds, this will only amplify and release the weirdness into the daytime hours. A good thing though, is this drug will increase my appetite, which has been horrifically on the negative side. Maybe I will imagine something tasty wandering through my living room. Look out, dog!

Home, but undiagnosed.

Last night I was shipped home from UCMC and my little isolation room. Twice in the past nineteen days I made journeys from that small room, once for a CT Scan of my chest (I keep asking how many I've had this year, but no seems to want to tell me) and once for a Echocardiogram that I foretold as a waste of time and energy, but the doctorbs seemed to want to through with anyway. I managed to 'escape' from the hospital without the doctorbs taking a chunk from my lung, inserting a chest tube and generally setting my health on an edge, just for 25% chance of identifying the pneumonia I have (had?) in my lungs. That was their plan, and I'll be damned if I'm SIGNING UP for a chest tube. And it's lovely companion, the Pleurovac A-6000. Having a chest tube inserted in your side is akin to having a vaccuum tube (it's that hard) inserted on one end of your lung, on your side. My scar from the last one is still three inches long, dark purple and nasty looking. It's that kind of fun.
Apparently the shots they started handing me of neupagen did the trick for me. They raised my WBC to levels where I could start fighting off the crappy diseases by myself. Raised them from my entering numbers of 0.2 to yesterday's number of 4.7
4.7 is a normal person's count. Now, I'm nowhere near normal, in any arena of my life, but that neupagen gave me strength to begin to stop coughing all day, stop being tired all day every day and get going with the process of getting better.
Upon seeing my WBCs climb, the doctorbs started to wean me off all the IV antibiotics I was on and start me on oral antibiotics, because, let's remember here, the docs still hadn't figured out what I had. All they saw was improvement in my health and they did not know why so they wished to keep me on all the meds they could so as to release me under my terms. In the previous week, the doctorbs had wished to release me home with an IV, an IV pole, and somehow magically get back and forth from the clinic three times weekly. That was one option, which I turned down. Another of their fine ideas was to send me to a nursing home, which I also turned down. Then I demanded they just figure out what the hell is wrong with me, or at least give me something so that I may fight it off. I kept reitterating that I kicked Cancer's ass, and right now I needed just little help and I would kick this pneumonia's ass too. I fought these docs hard, I gotta tell you.
They never figured out what is wrong with me, other than having the common cold, but at least now, I am home, I can sleep for more that three hours uninterrupted, I can shave this beard off, I can shower!, I can cook and I can begin to get back to where I was before October brought me a cold.
Happy Thanksgiving, Everybody.
I've got lots to be thankful for, and I hope you are all very happy on Turkey day and gorge yourself on love and happiness.


PS: The color of Leukemia Awareness's Ribbon is Orange. There's a week in February dedicated to it, and September is the month. Just FYI...

I thought I'd be out of here by now...

I've been here now in "isolation" for 13 days, with nothing new to report. The doctors are unaware what type of Pneumonia I've got, they haven't yet stopped the fevers and I'm still very sick with what I and the doctors can tell is a cold. Okay, well, they did stop the fevers for like a week, but they decided to take me off a an antibiotic randomly and then my fevers came back. So much for Dr. guesswork. I'm also still battling a sore throat; it seems that the back of my throat is awfully sensitive and barks at me when I try to enjoy things that are acidic, like orange juice, tomato sauce, hot peppers, etc. Basicly, the spice I like to eat on a daily basis. So the blandness of the food isn't helping my already poor appetite. I'm going down white bread lane and I'm not happy about it at all.
It seems like when i get a fever in here, I get far less rest and sleep than one would expect a hospital to be allowing. First, there are blood cultures which must be taken while feverish. Then there is the X-ray dude who comes and gives me a chest x-ray, then there is, or sometimes not, the delivery of Tylenol to help me out. Mostly not, as that gets forgotten with all the tests on everybody's mind. Then there's the early morning blood draw, followed by vital sign taking (which also happens during fever), then in comes housecleaning, followed by a nurse changing my IV, and every single one of these people apologise for waking me up and tell me I should get some rest. Finally i order breakfast, and sleep until they bring it, then I go back to sleep for fifteen minutes, to be waken by a doctor or nurse coming to check on my lungs or whatever. Then i eat and go back to sleep.
Jeebus, I'm tired.
So I have been giving the doctors a ten ton of crap, demanding answers for their actions, asking the right questions and generally putting them on the spot and making them squirm. I ask them why they decided 'that' antibiotic was the one that was unimportant. i ask them when they will identify the disease in my lungs. I ask them when the fevers will stop. And i ask them to tell me honestly when I will be going home. So far, I've got no answers, just a lot of frustration. Poor little doctors don't realize how bad they are going to be reamed if they don't start producing results. I'm just not good with frustration.

You Let them do What?

Today finds me back in the comfort suites of the UCMC, as my battle against the fever that would not die, the hacking cough of hell and the sore throat of a giarraffe was going poorly. So Poorly, that i developed pneumonia. Which could flat out kill me. So I got admitted Wednesday, saw a battery of doctors, talked to too many nurses and had a fitfull first day.
So there are many questions:
Did i get pneumonia because my cold had just gotten that bad?
was the pneumonia able to infiltrate because the cold had pretty much knocked me down?

Either way, my heart is no longer racing, my head a bit clearer and I'm looking forward to seeing pictures of Stosh, so let's look at the bright side of things yeah?
There's the wonderment of the first snow, hockey is in full season, and they've got to put up that huge damn tree in Daley Plaza. And Thanksgiving should be fun for everyone. I am still on the "No Children" ban, so my family is going to get a Skype visit, perhaps from a decent viewing point.

Remember way back in January when I had a Bronchioscope and, they, like, poked a hole in my lung?
Well, it turns out I let them give me another Bronchioscope this morning. Maybe it was 104.4 fever. Maybe is was my delusional state after so many nights of not sleeping. Maybe I just knew that it was my best chance to identify this pneumonia so I can get back to being Mark and stop trying to fight a fever on a daily basis.
all right, I'm tired, I feel like i can sleep and I am going to take advantage of that.

I'm being dragged down by the common cold

Okay sportsfans, I'll give you the sugar first.
Back on Day 180, I had a bone morrow biopsy, which was the best one so far in terms of pain. Which, of course is like saying I had the best root canal ever. And the results, well, they remain the same! "There is no evidence of leukemia in the marrow sample" Hooray for that, because I was worried, what with this three week cold of flus and the sore throat.
My WBC dropped down to 0.3, so they gave me a shot yesterday of Neuplasta, a longer-lasting version of Neupagen. And there is concern for for my other counts, so I have to go in on Wednesday for a CBC and possible blood transfusion. I'm telling you, this cold thing is a Rhino!
I'm still hanging in there, I just don't have a whole lot of energy and get tired in a very short period of time. Stupid Blood. I just wish I could sleep for a long period of time. Waking up every 2 hours is very disruptive. Last night I did manage to get a solid six hour sleep with dreams included and it felt wonderful.
If I were back at work, I would have missed three weeks this month. With a cold.
Is that just nuts? Doctor knows best I suppose. I've just got to evade the pneumonia.
That'll be be the end of me I fear.
I'm trying to use all this "sick time" to just do little tiny things around the house. Things I've been meaning to do for a while, but I let slide while I was able to enjoy the outside. Moving lamps, putting away boxes that have been sitting on the floor for months, just real small stuff, remember I get tired real easy. But these small accomplishments make me feel productive and raise my spirits a bit.
Talk about raising spirits, have any of you been watching this AMAZING set of baseball playoffs? The Giants appear to raising the spirit of the whole of San Fransisco. The fans rendition of Journey's "The Lights" made me cry. seriously.
I will be back next week with updates from Weds.
Until then, it's loads of peppermint tea with loads of honey, so I can keep chugging water. If any of you would like to cure the cold, I'm ready.

Sick for a week now, and a week more expected.

I started to feel ill last weekend, and truly felt bad Monday morning the 11th. Today is the 18th and I have been back to the U of C three times to try and garner some help for how awful I'm feeling. Everyday I fight off a low-grade fever, I have a wicked painful cough, and terrible sore throat. I've taken nearly every over-the-counter cold and flu remedy but nothing sticks and nothing seems to work two times in a row. Cough drops are my best friend right now, and I have been going to sleep with one in my mouth, usually waking up with it stuck to my arm.
What is this terrible ailment, you ask?
Lab test have confirmed it to be the almighty Rhinovirus. Yep, the common cold.
A cold used to, maybe, knock me down, at tops, for a half of a day. I have been bed-ridden for more than a week, and I'm getting tired of sleeping 19 hours a day, waking only for medicine, baseball, and soup.
My doctors have cleared my body of cancer - which we will test again this Friday - yet the common cold has kicked me down a flight of stairs and thrown grandma's piano after me.
I suppose I got over confident in my body's healing, and now I am paying the price.
Stupid cold.
Stupid me.
I'll let you know when I get on the good side again.
-Mark

Does Leukemia have an awareness color??

Leslie here!! What's up blog readers?? It's FRIDAY!! Let's celebrate!!! :)

So I have a question. DOES our dreaded Leukemia/blood cancer have a color? Like the Susan G. Komen pink for breast cancer awareness that's everywhere?? I mean, I have to say, KUDOS to that campaign...honestly, I see the pink EVERYWHERE!!! The NFL is even wearing it!! It's on our food packaging, on our televisions, on vehicles, it's at the bank, it's all over the internet, it's on television sitcoms, it's on pretty much every piece of massly consumed product you can imagine...and I think it's safe to say...the campaign has worked. Don't we all see that pink and immediately know what's up? THAT is a successful awareness campaign. So...then of course it brings to MY mind..."but what about Leukemia?" "What about T-PLL?" Do we have a color? How many people even actually know that Leukemia is actually a blood cancer and not a tumor cancer? How many of you were already aware of that before our beloved Mark got sick? I know there are many medical professionals that read this blog (my mom is an ER tech at Botsford Hospital in Detroit, and her and her medical-type friends read and talk about this blog a lot at work), so I know you guys and gals of course already knew that Leukemia is a blood cancer, but those of you out there that had really only heard the word "Leukemia" before, did you know already that it was actually cancer of the blood and bone marrow? I'm curious. I personally have this drive and need to want to educate people on this disease, and I feel like more can be done to drive awareness about this illness so that maybe...just maybe...more research can be done about this cancer and maybe...just maybe...one day...we make even more progress towards a cure.

I've already emailed the Leukemia & Lymphoma Society to ask if there's an awareness color, and I'll let ya know what they say. In the meantime, (and I mentioned this in my previous entry), I wanted to more sufficiently explain our awesome "Top Blog of 2010" award. The award was given to various people who have blogs about various medical conditions. There were a handful of awards given to the top Leukemia blogs of 2010, (you can see the nifty "award seal" on the home page of this blog), and I wanted to say "thank you" to the Medical Billing & Coding Organization for the honor. "Curing Vancura" is listed amongst many other blogs about Leukemia, all that outline their own personal journeys through this horrid disease. But what I like most about getting the award, is that it helps with the awareness thing that I've been internally obsessed with since the word "Leukemia" was uttered to us back on Jan. 8, 2010.

I have this need to talk about what happened to my man. I have this desire to tell people exactly what happened and to let them know that if it's happening to them or to someone that they love, not to freak out too much, that things can be done. To trust their doctors enough, but no so much that you're afraid to ask questions. That it's okay to challenge them, it's okay to make them show you exactly what's happening if you're confused. To be brave. I just want to offer a place to go, and a bit of knowledge and hopefully solace to those that are panicking, those that are living in a constant state of fear, those that feel alone. Mark and I both do. He's already talked to a few different people via email and via telephone that have stumbled upon our blog, because they're going through the same thing, and through that, WE can find our peace too because we now find ourselves in the position of support givers because we've been through it (and are truthfully still going through it). And let me tell you, there were many nights in 2010 that I wasn't sure we'd ever get here. Now that we are, I can feel this passion building in me, in us...that we're supposed to reach out and offer up our support and our knowledge and experience and to be advocates. How could we not? After the incredible support bestowed upon both of us, both Mark and I feel an intense need to give back.

At any rate, Mark's still got a ways to go. His white count is still low, but he's so happy and healthy. The (now quarterly I believe), bone marrow biopsy that he gets has been turning up with "zero sign of leukemia", and as long as that stays like that, we're both happy. Now just crossing our fingers for a healthier white count. Of course will keep you all posted on that progress.

In the meantime, check out the list of blogs that we are honored to be mentioned with. I kind of scrolled down looking for "Curing Vancura" and got a lovely sense of pride when I saw it amongst the list. Here's the website: CLICK HERE

And if anyone knows the answer to my question about Leukemia's awareness color...give me a shout...leave a comment.

Love to you all.

-Leslie
(and Mark)

A New Entry From Leslie

Hey Everybody, guess who it is?? It’s me Leslie!! I haven’t written a blog entry in quite a while, and in checking our "curingvancura" gmail account, it seems as though we've wan a "top blog" award with the medical & billing coding organization for blogs about Leukemia! Wow. I'm speechless.

Anyway, I've got an update for you finally. I’ve been leaving the writing to Mark since he’s been willing and capable, but after meeting many more of you face to face at various weddings, events, and gatherings, I’ve decided to post another entry if only because so many of you have asked me to. No prob. Here goes:

So, to say that a lot has happened in the past year is a huge understatement. To say that emotions about Mark’s illness has run the gamut is also a huge understatement. To say that it’s not only been extremely difficult on the man himself, but on us as a couple, (an albeit “new” couple) is probably one of the biggest understatements yet.

The joy of today is that Mark is alive. Mark is healthy, (for all intents and purposes), Mark is (so I’m seeing) back to fully being himself again. That he’s made it back from the brink, and has gone through the horrible time that he has, is quite honestly nothing short of a miracle. We can all gather our collective sighs of relief as one, and relax a little right? Right.

I personally feel like if before this whole year, I was chronologically a 36 year old female with the spunk and energy of a 25 year old, that after this year, it’s likely (and obvious to me and probably me alone) that my chronological age has caught up with my mental, and emotional one. 2010 has forever changed me, a little bit for the worse, but most of it for the better.

I’ve learned so much about how I handle myself in a crises situation, and how emotionally durable I can be. Mark tells me sometimes that one of the most surprising things to him about me is how fragile I am. I think that’s interesting that he says that because what I’ve learned this year is that in order to be a fragile person, you actually have to be strong enough to risk being broken, and if there are any examples of that in my life, it’s for sure 2010. This year my heart has been stolen, it’s been filled up, it’s been terrified, it’s been completely broken and mended and broken again…and I don’t think a truly fragile person could ever live to tell the story so, to Mark’s “fragile” thoughts about me, I say “I am the strongest fragile person you will ever meet.” And y’know? I’m kind of proud of myself for that.

One of the most surprising things to me this year has been actually getting to know my boyfriend for the first time, after already being together for almost a year. Before Mark got sick, we had only been dating for a teeny tiny three months. And everybody knows…what happens within the first three months of dating? Unicorns and rainbows and gumdrops and LOOOOOOOOOOOOVE. Right? Well, that was for sure true for us too.

Mark and I agree that we got one of the rawest deals in the history of the “newly dating”. Right when we should have been existing together in that dreamy, blissful haze of “new romance”, (and we did live there for pretty much the entire first three months. And let it be known, it was one of the happiest times of my life), right smack dab in the middle of that, we got hit in the mouth by some real life….really hard and really fast. And why mince words, it’s one hundred percent, completely and totally sucked. And both Mark and I have had to grieve for that couple that we were back then, because after being through what we went through together, at such an early time in our relationship, it totally changed us as a couple. And once again, some of it good…some of it bad. Even Mark’s doctor has said before - that couples that have been together for years and years, that endure cancer treatment together don’t make it, or are forever changed as a couple because of it. Well, even though we’ve only been together a short time, I’m here to tell you, there is no possible way we could have gone through this past year and not changed as a couple. We are after all, both only human.

To say that the “romance” got yoinked away from us is another one of those understatements. And it’s been really hard to try and get that back, and it’s a daily struggle. Both my and Mark’s timeline is pretty screwed up. He was asleep for a little over an eighth of our relationship, (at that time), and then when he woke up, he thought we’d been together for a year and a half already; and having to remind him that “no sweetie, you’ve known me only five months”, really messes with your mind.

You’ll probably remember that I blogged about moving in with Mark back when he first got released from the hospital. I did, and I was very happy to do that cuz the poor guy totally needed someone like 24/7. His second time however, being released back home after his transplant, (which btw was simply administered via an IV that smelled like creamed corn, and then he was done. It wasn’t as invasive as I had expected it to be, and I was able to sit and chat with him while he received his sister Jeanne’s stem cells). Anyway, his second time being released from the hospital was a pretty different story and he was finally able to do pretty much everything for himself; so being that Mark and I (at that point), had only been together for approximately seven or so months, that I also had my own condo that I hadn’t been to in a few months, and that I was also starting a new job on the way Northside, I decided it was best for me to go back home, and try to get some semblance of normalcy back into not just Mark’s life, but mine as well. And you know, I’m going to say this and this might make some of you angry, but it’s my truth and I’m not embarrassed by any of it, and I honestly don’t think Mark would be either.

The last admission in the hospital, while physically much less traumatic for Mark, it was one of the most intense for him emotionally. He sat fully aware and fully awake in his hospital room, not allowed to leave this little, tiny prison…and he was alone with his thoughts. Because of the less emergent nature of this particular admission, there were stretches of days that he was by himself. I only missed two days the whole time he was in there, because I was feeling run down and scared I was coming down with a cold and was really super paranoid about infecting him. I would often arrive to visit with Mark around 3 or 4 in the afternoons and stay as late as I could keep my eyes open. There were some days though where I couldn’t make it there until pretty late at night because I was either completely exhausted and needed to sleep or because I was searching for a job, which took up most of my day.

Regardless of how late it was, I always made sure to get there though. Mark would admit to you too that during this time, a lot of his anger about being sick, his anger about being left alone, his anger at being terrified that his treatment wouldn’t work and his anger about being scared of dying…got transferred onto me. I think he’d fully admit that to any one of you if you asked. And there were nights in that hospital room, that he’d be mad at me for being there to visit too late. (And yes, he’s fully aware of how irrational that is now, but back then, we were like live wires of emotional exhaustion, and everything that was said got taken very personally, it was almost impossible not to take it that way. Feelings got very hurt during that time). And because I was hanging on by one little, emotional thread, the mere insinuation from him, that I let him down in any way totally devastated me and I lashed out back at him. We fought. We totally did. But I ask any one of you, put yourselves in that exact same situation, with your significant other, and there’s no possible way you’re going to get through that totally clear of any strife between the two of you. It’s too big of an emotional beast for any two people to handle perfectly. Let alone two people who barely know each other.

After that portion of horribleness between us, and trying to truly consider where the anger and strife was probably coming from, I decided to move out of Mark’s house, while he was still in the hospital. I was hoping that once he was released, that it would actually help us to get some sort of normalcy into our lives again. And “normalcy” for both Mark and myself, (minus any kind of illness that is), means an independent woman, and an independent man, living in their own respective homes, trying to forge through a brand new relationship with each other, while maintaining their own individualized lives.

So after I was feeling as though he wanted to fast forward our relationship into “old married couple-land”, which was really just born out of him feeling so isolated in the hospital, and was really just Mark trying to make sure he was never alone, (understandable)...with me moved out, it just made him feel abandoned by me, and as though I “regressed” our relationship by moving out. So, we’ve got some issues. But again you guys, I ask…how the holy-heck could we not?

Time has long since passed since I’ve been back at my house on the North Side, and Mark has successfully been living his (now healthy) life on the South Side. We see each other, (or try to), a few times a week. I’ve gone back to producing the theater that I produce at night, and Mark’s actually been to a lot of my theater stuff too since being cleared for concerts and rock shows, (though still no sports games with assigned seating, much to his dismay). One of my favorite things in the entire world right now is when Mark shows up to something with me, and seeing everyone’s shocked faces at how amazing he looks. He looks like a young and handsome Freddy Mercury…or honestly, just like a younger, more mustachioed version of himself. Very handsome, very smiley and very happy to give hugs to those whose eyes bug out of their heads when he walks in the door with me.

Actually, this summer Mark’s done many fun extra curricular activities, and though his favorite one (baseball) is not on that list, there were many fun gatherings and events that he’s been able to go to!! Which is awesome. At one point I thought about keeping a list of them for him, so that on the days when he felt “trapped inside by his immune system” I’d be able to show him the list of stuff he HAS been able to do, instead of letting him focus on the stuff he HASN’T been able to do. I didn’t end up making that list, because (thankfully)…we both just got too busy keeping up with each others events, parties and functions.

So, now where does that leave “us”? Well, every day is different. Every day is a choice to be together. Every day we get to know each other more and more. Mark’s learned for the first time just how insanely busy I get between my day job and my “theater” job at night, I’ve learned how quick he can be to a hot temper, (my brother Kevin is the same way), he’s learned that I have no problem crying when I’m hurt or sad, I’ve learned that he can be mean, he’s learned that I am one of the world’s most horrible house keepers and that I am not a patient woman. We’re kind of getting a lot of the “real and human” sides of each other right now. The “unicorns and rainbows” state of “us” is sort of a distant memory, and there are many days that are near to impossible to remember that at one time, we fell very quickly in love with one another. But ya know what? That’s totally okay. I’d much rather have a realistic and honest relationship than something fleeting and frivolous, and just not real. And no matter what happens between Mark & I in the future, we are forever changed for knowing each other.

Mark is alive, and his leukemis is technically “in remission”. And I’ve been waiting a long time to type those words.

We love each other, and we do have wonderful days amidst all of the craziness of trying to get to know one another after all that’s happened this year. He drives me insane and makes me so mad sometimes because he’s one of the most stubborn men in the universe, but I do then remember that it’s that same exact stubborn nature, that I personally believe helped get him through this horrible illness. So many times, I do let it slide, but not before giving him an earful about chilling out sometimes. ;)

We do laugh a lot when one of us discovers a new and strange quirk about the other that hasn’t come up yet, and it’s times like that that we remember it really hasn’t been that long, and maybe we should give one another a bit of a break. So we do kiss and make up pretty readily…which I think is pretty great.

Oct. 17th 2010 is the 1 year anniversary of our first date. Our “apple pie” date. For those of you that don’t know that story, I’ll save that for another future blog entry. Anyway, this year, on Oct. 17th is the same weekend that my little brother Michael will be getting married, and Mark and I will be at the wedding together; and hopefully, at 11:59pm on Oct. 16th, we’ll be on the dance floor, being silly, being a little tipsy…dancing like fools…and we won’t even notice it when the clock strikes 12. Which is exactly how it should be.

-Leslie

It's hard work taking it easy!!

So, let me ask you: How many of you thought I could actually "take it easy"?
My way of taking it easy means barbequeing, fishing and golfing. Enough, actually, to make up for a half of a year of inactivity. My golf game is getting back to where I was last year, my fishing skills are back to "top Fisherman" status and my barbeque skills, well, for those who have had the opportunity to taste my efforts in the past, my skills have not diminished at all. in fact they may have increased, what with my newly enhanced taste buds. You see, ever since my transplant, perhaps since my release from the hospital after the first go-round, my sense of taste and smell seems more acute than ever. Everything tastes new, smells are far more distinctive than I can remember and I take great enjoyment from grabbing these things as new experiences and enjoying the hell out of them.
I'm enjoying my freedom from the clinic as well. Oh man, now, I genuinely liked the medical staff and they sure made my treatments as pleasant as possible, but the freedom of schedule and freedom from just being in a hospital environment is a great benefit. Physically by eliminating contact from the unhealthy and being home. Mentally the effect cannot be mathematically calculated. Maybe some wizard or soothsayer can tell you the true value of mental happiness gained from a bit of hospital freedom, but I surely can not.
I've been taking this time I have now and living as if I am retired. But it's exhausting! I do enjoy putting myself at the edge of limits and stretching those limits, and that is what I'm doing now: bringing my limits back to those you would expect from a mainly healthy dude around my age. What I am seeing is that I am making myself stronger than I was before, but the path is slow and patience must be a factor. Walking more than 6 miles tires me these days, but I can walk! I try to make myself sweat from physical exertion at least once per day.
I have been making plans to get back to work soon, and I am really looking forward to it, for I'd like to see my life return to normal adventures. Too much to ask? I think not.
Chickenfest, for those who missed it, was a blast. A great party, a great way to return to my (semi)normal self and get on doing what I do best: Have fun!
in two years, there will be another one. Make your plans now. As for me, I've got a golf game to get ready for, just as soon as I re-spool this fishing reel. It's hard work living like you want to!

Maybe I should lay off the gas pedal.

in every stage of my recovery (am I even allowed to call it recovery if I am not recovered yet?) I have pushed my doctors to allow for me to get back to being normal as fast as possible. I pushed to get the tubes out of me once I woke up from my little coma. I then pushed the nurses to let me walk on my own and get on the stationary bike to regain my strength. I pushed to get that chest tube out. I pushed the whole medical team to let me come home back in February a mere three weeks after a complete systems failure. I pushed them to take the trach tube out of my neck. I pushed again and again after my transplant, trying to get out of the hospital the second time. Then I pushed some more to get my Hickman centerline out well before it was expected. Now, things are seemingly normal, and I can't stop pushing my poor doctor some more: When can I go back to work? When can I start getting my immunization shots? When can I do yardwork again? When can attend a rockshow? A Baseball game? When can I drink beers? If I can't swim, can I wade? When can I hang out with kids again? When can I fly? ride my bike? take the "L"? Take the bus?
I feel like a child who broke his leg in the middle of summer and just wants to go outside and just play, man.
I've thought this through this past week, since taking it in and having a grand birthday, seriously just happy to share a room with superb friends and laughs until we are all wiped out from the good time. I'm going to take some time and relax from all my pushing now. i'm going to enjoy a summer month of activity light enough to call quality exercise for senior citizens, but nothing more strenuous than that. I'll learn a new skill, like playing guitar, something that I can create with and have fun, without feeling like I'm just passing time. By the way, I received a guitar for my birthday from a very generous friend and I now have the tools to play in a creative manner.
i've found that it is easier now to create since my mind is active again. I think that is what hurt the most; not being able to think in the manner that I have grown quite used to. It hurts being stupid about things that used to come naturally, you know? Like when I had to relearn how to walk, I had to relearn how to use my brain but that took longer. Now, before i can run physically, i can run mentally. Capice? I really like to run mentally. the timing of this couldn't come at a better time, for baseball playoffs are approaching! I kid, because we all know the Cubs are "Completely Useless By September", especially this year. I won't deny rooting for the White Sox, but those clowns are playing an awful lot like the Cubs lately. I still watch both teams, dammit, right down to the end.
So here I am, looking at the calendar and realizing that I am only four months out of transplant. My blood counts are slowly rising, s-l-o-w-l-y r-i-s-i-n-g, so i will chill, listen to Dr. Artz' advice and listen to my body, and start getting comfortable with a daily routine, and enjoying that routine. I will mark the calendar for a return to work at six months out from transplant and enjoy every moment of the time in between, trying not to focus on what lies ahead, but instead focusing on the details of every day, every hour, every minute, and revel in every sunrise.
I really am just happy to be alive, amongst friends and healthy.
I think we all ought to feel that way, but I understand if somedays it's hard to realize what is truly important and what is really small potatoes.
Oh and please feel welcome to enjoy Chickenfest with all of us mad fools. Life is meant to be lived and let us live heartily with many variations of poultry cooking goodness. Everyone is welcome, come celebrate!

DAY 100 !!! - August 4th

Today marks the magical day #100. Hooray! this day is only statistically important because most people, if they are to get a serious blowback from stem cell transplant, have their hardest battles inside the 100 day mark.
Now, I'm not out of the woods yet and still am operating on an infantile immune system, but I'm getting stronger all the time and feeling more and more like myself as the summer wanes. I've had issues only on back-to-back strenuous days and have learned to plan my weeks better. i've regained my skills in the kitchen and can manuever just as well as I ever did.
The body is something that has come along because I've focused on being healthy, eating well and getting proper exercise. My mind is now getting into shape and I'm having fewer and fewer occasions of 'cancer brain' and find my wits returning and my mind regaining memory and details. Still, i get moments when I forget what the hell I was doing as I walk into a new room, much like an aged person.
Of course I am getting older, but this week, getting older is something for me to celebrate. Remember way back in January when the odds of me getting older were slim? January seems like a lifetime ago to me. So many minutes I spent looking at the ceiling in the hospital just thinking and willing myself to get better, never looking at bad news at set backs, just looking forward to my next healthy milestone. Such a long time ago. So many dreams ago, so many hurdles and short-term goals ago, I remember so foggily my entrance to the emergency room, doubled over in pain and now, I feel great and look physically, at least to myself, better than I did in December. Better than I have in quite a few years. So this Friday's anniversary of another trip around the sun, another count of sunrises, all of them gifts, will feel special to me. Special like a true present, a real gift to myself.
My current issues are mainly financial, with not working and trying to keep on top of all my medicines, trying to re-arrange some bills and mainly just staying afloat. Just day-to-day life in this economy, I'm learning.
My medical update: the last bone marrow biopsy (jeez, am I the only guy who gets hungry thinking about his own bone marrow?) showed all new cells, no bad blood, and zero leukemia. I recall Dr. Odenike telling me there was a chance we had to cure cancer, and i believed her. I didn't doubt her one bit and now it seems that is case. A truly miraculous turn of events and a tremendous achievement by all of the medical staff at U of C. Workers of miracles, them peoples.
I'll rap at you folks after the weekend; I've got some more contemplating to do for a day or two, then it's down to less serious matters and rejoicing in the life I been given. Like your clocks up and we'll all raise a toast at 7:35pm CST on Friday.

You are all invited (so long as you're healthy)

The past ten days or so I have felt marvelous, save for the one occasion when I tried to golf two days in a row. I found on that day that my recovery skills are not what I wish, but hey, I'm still golfing. It could be the heat we've been experiencing, but last year I would have reveled in these same temps, so I blame it on lack of quality bloods cells at this stage of recooperation. Still I managed to play some decent golf this week, back to a level I can be comfortable enough with to talk smack, which is a huge part of my golf enjoyment. Can't talk smack if you can't back it up, you know.
Day 100 is rapidly approaching with a tidbit of knowledge: Statisticly speaking, most of the horrible infections I am so vunerable to take hold within the 100 day mark. So, whoo-hoo, two weeks more until I climb out of DefCon 1. Still I'll be in DefCon 2, but I will be able to relax a bit more around people and not totally freak out like I've been doing on my sojourns into various storefronts.

And, as a bonus, I've been 'given permission' to commence with CHICKENFEST plans!
All of y'all can attend, so long as you're healthy. No runny noses, no sore throats, no sniffles, colds or fevers. No open wounds. No NOTHING that even sounds like a sickness. LouPinella, you can't come. Ricketts, you should probably stay away too. Ii'm a fan and all, don't get me wrong, but your names sound like a major illness.
This Chickenfest craziness will be occuring on September 5th, the Sunday of Labor Day weekend. All you gotta bring is a chicken dish. There will be an evite very soon, so keep an eye open for that. You heard it here.

As for my health, I'm getting stronger again, this time around forming actual muscles, taking less meds - I'm down to seven, I think - and my mind is getting quicker with use. Still, I'm missing the crowds of summerfests I love, with the live music and goofy people watching. I may be able to attend a rock show in October, but certainly not yet. Until I drive my neighbors crazy with my mock shows from the basement, with the stereo cranked up load.

Stay happy people, this is a great life. Let's all take ten minutes and enjoy today. Breathe deep and regard that as a blessing in itself. Look at nature and marvel at its gorgeousness. Have a cocktail and watch the sunset. Whatever, just take a moment to revel in the fact that we're alive. I sure am.

66 days old.

That's right. I'm 66 days old, not 66 years. That's how old this new immune system is, after accepting my sister's stem cells. At least, I've appeared to have accepted them into my body so far, and have shown no signs of GVHD (. Really, i've displayed no signs of Illness whatsoever. The worst thing to come on through was a small bout with depression, but even that was small and hardly noticeable (I think). I've started working on my golf game, and have gotten really good at a few video games.
Oh! I have also developed a HUGE sweet tooth, a peculiar happening, because prior to my transplant, I had zero desire for sweets. Now, I'm all about the cookies and sugar, even going so far as to place a couple of spoons of sugar in my coffee. That little nugget of information will stop more than a few persons in their tracks. Ice cream, cakes, pies, DingDongs®, you name it, I'm eatin' sweets.
66 is an important number in my healing process. It's two-thirds of the way to day 100, a day talked about in reverent tones by those in the transplant world. I won't even pretend to know why day 100 holds magical powers, but I'm planning on it like a release date from this imposed anti-social activity. Trust me, I really want to be out there in the sun and fun of this Chicago summer, as it is just rocking along without me, dangit.
If anyone is around the SouthWest side of Chicago this 4th of July, feel free to drop on by my house for some burger or brats and some cold refreshments. We'll be hanging out in the yard like there's nothing wrong with anybody. ("remember back in January when I had cancer?""Yeah, that seems like 10 years ago.")
We'll be turning up the tunes from the downtown rawk show and playing some yard games. Come on by! all are welcome.
Oh! Bonus from being in such poor straights this winter: when people see me, it's always this: "you look so good!". I guess when the last time you have been seen you had tubes from everywhere and machines hooked up to every organ, upright equals looking good. Sweet bonus. I honestly think I look like a slob all the time, but even the nurses I see on a weekly basis tell me I look better and healthier every week, so I've got to be making some progress. Today I was told that I am unrecognizable from the fellow they saw in February. I suppose it's a good thing that I've stopped wearing pajamas everywhere, too. That and the upright, walking and talking thing, too.
Okay!~ TO wrap this up: BBQ on Sunday, come on by. Just leave the childrens at home. And bring ice. or Champagne. A summer party can never have too much of either.
Today's picture of health:

Still hanging on the line.

Like Laundry, I'm still hanging on the line.
I'm just healthy enough not to require a blood transfusion, just healthy enough not to have any complications, just healthy enough to hang out and do almost nothing. I can fish, but I can't dig for worms. I can walk the dog, but I can't pick up her 'leavings'. Golf appears to be the main activity for me, but I'm to stay out of the sun. So I've been wearing long sleeves and loads of sunscreen, but still having fun out there.
I can eat berries, after frozen or cooked, but I've got a ten ton on the vine. That I'm not allowed to pick due to the likelihood of being scratched and poked by the brambles.
Christian and Dennis have been playing groundskeepers to my house, So i've just got to make them a pie or two from the berries I need picked. Whomever picks them will get a pie too! So come on down to the southside and pick some berries for me, yeah?
Short post today: Nothing new to report, nothing new happening just a slow, long climb to being a completely healthy human again. Seriously, did you expect me to watch soccer all month? It seems all I did in February was watch curling, a bit more exciting of a game. Hockey is over and the baseball in this town leaves me wanting to drown my sorrows, but I'm not allowed to do that either.
I've got golf, and fishing with lures.
And pie making, eventually.

Today's Picture of continuing health:

Looking for Count Zero

Today marks day 39. This is the day count 'after transplant'.
So far, I'm doing great, or so I'm told by the nurses and doctors in charge of my well-being. Today i will receive the test results of the 30 day bone marrow biopsy. Allegedly. My pelvic bone still feels a tad bruised from last Friday's perferation procedure, but I'm at least able to move around without discomfort, until I lapse back into my slouch mode and throw myself onto the couch, car seat or bed without concern. Only then am I reminded of the holes punched into my bone last week. But today, today I am looking forward to hearing the doctor inform me that no Leukemia was found in the marrow pulled. Which will give me a 60 day reprieve until my next biopsy.
Hoo-Ray!
Maybe I can get more answers today as well, to such questions as: When can I enjoy a cold adult beverage? How long before I can attend an event with a large crowd? When will I be able to fly? When will I be able to return to work?
It seems sort of cruel that I am forced to take the summer off, yet cannot go to baseball games or drink beer. Two of my favorite summertime activities! I feel as if I am grounded and house arrest all at the same time. Stupid cancer. I don't even feel sick! Do I look sick to you?


I suppose that is part of my issues, I've never confronted my own mortality, even in the face of this disease. I've never felt as if I was going to die, never felt as if I needed to live life any fuller than I had been living. I am forced to slow down, though and slowing down was never, ever my thing. I can't handle moderation! I have a hard time with this retirement pace and I find my creative outlets aren't very creative when I've nothing to rest from. Too much rest makes me ornery and feisty. Okay, MORE feisty.
It may be time to start hitting the weights and wearing myself out in a far more physical manner, time to start pushing my body back into shape, if only just to get rid of these restless feelings. The problem is, weight lifting is boring, Sidney. Maybe i'll start bench pressing the dog. That ought to make things at least squirmier.
in the meantime, I will continue my mastery of urban fishing, golf and video-gaming until I scare off all would-be challengers. Thank goodness for online anonymity and gameplay so I can continue to eviscerate at will.
Today I'm not looking for a high score though. I'm looking for Count Zero, and a few answers.

UPDATE!!:
The results are back from the biopsy and I was told that there is no sign of Leukemia and I'm on the superstar healing program. I'm to remain in boredom land and refrain from most of the good summertime activities, as whined about above, and to remember, no swimming for a year, no yard work and stay away from the children under the age of 16. Those sick buggers.

Home is sweet now!

I've been home now for little more than a week. It is good to be home! sleeping in my own bed, uninterrupted sleep (by both nurse and IV pole beep), the constant company of my dog, friends helping me out, life seems to be on quite the uptick. I still get frustrated because I'd like to garden a bit, and spend more time in the sun, but the reality is this slightly inconvenient style of life is a much better alternative to being on the wrong side of the dirt.
I am surprised to be still sporting my mohawk; a lot of my hair fell out, and it is quite thinner than when I went into the hospital a month ago, but if you never saw me before the chemo you'd never know. My 'playoff beard' looks a bit scraggly, but not much worse than some of the Blackhawk beards. I will shave that soon, I don't like the white very much. Leslie calls it 'distinguished' but I think she's just being kind. I did shave much of the beard last week - after I shaved in the hospital with nothing more than a washcloth and some soap! - and still don't actually need a shave again; quite the odd thing for a guy who used to gain a five o'clock shadow by three.
Life at home is a lot more tiring than I perceived it to be as everything wears me out: going up stairs, going downstairs, making the bed, doing laundry, I mean everything just takes more energy than I have to spend. Naps, man, naps are a wonderful thing. But I can drive without too much effort, and the shaking head of my doctor, but as I am told by the nurses, I doing far better than most of the patients in my situation. Hell, my immune system is only 26 days old. I'm a bay-bee! So I try and make myself stronger by staying on my exercise bike and pushing the limits of what I think I can do. Mostly avoiding the doldrums that I believe could be detrimental to my situation; I honestly believe attitude and mental perception are my strengths, so I work to keep both very healthy.
If you've got some free time, feel free to call me! My number is 773 284 2617. I can't promise not to swear, but I can promise it won't be at you. Email works too. I'm most always at home, stop on by! we can play cards or video games, or just shoot the breeze on the back porch. I might put you to work in the flower beds, but you can handle it. Later in the summer (not much!) I'm going to need volunteers to pick my raspberries, pickers get first crack at whatever dessert I devise, be it sorbet or baked goods.
Oh, but I wasn't home yesterday afternoon! I actually made it around the nine hole course nearby without falling down or wiping myself out too bad. Although I napped later and went to bed early, still it felt good to do an exercise I enjoy and get the wind in my face. Just between you and I though, I have no strength and lost a few yards on yards on my irons. I can still putt though. Didn't lose a ball either. High score though...
Next week I'm desperate to get myself some fishing. We'll see if I can't arrange that. Until then, it's household duties, walking around the block, and video action.
My spirits are high, my heart rate remains regular and steady, and the sun comes up every morning. Things are sweet.

Race ya!

Tomorrow i go home. Allegedly. I've remained a boring patient for most of this stay at the hospital, except for last Friday, when my heart went into "atrial flutter". Which meant they (the docs) sent me down the hall from the transplant wing into a room with a heart monitor, as my heart wouldn't release the beat of 160 without some sort of treatment. Many drug trials later, the docs reduced my rate back to a normal beat and rhythm on Saturday, only for my crazy heart to develop an "atrial fibrillation" on Monday. Again with drug trials and beta-blockers and now i'm at a regular rhythm again, and it appears that I can go home tomorrow. As long as i can make it through the night without incident, and I can stay at home as long as I can remain without illness, infection and more heart racing incidents. There will be no lawn-mowing, no gardening, no strenuous activity for a while and no heavy duty work around the house. Luckily for me it is almost summer and I can concentrate on golfing and fishing, right? Anyone who cares to drop a line in the water should look me up, my license is up to date and my reels are all wound. My golf clubs should be in order, but my dreams have told me otherwise and they are all i have to gauge my golf by these days. Perhaps we can form a group and make road rally to the drive-in some saturday night - it is the one way for me to see movies without being in a large crowd of people. I'll race you for the good spot in the middle in front of the snack bar.

"Bored is Good"

The doctors and nurses coming through my room who look me over and check my signs all say the same thing: "bored is good". Compared to my last extended stay here at the UofC Hospitals, I can agree, but my mind compared to then is far more alert and my body certainly feels much, much stronger. I can get out of bed without help, for starters. i can walk down the hall and take rides on the stationary bike, too, but getting out of bed and spinning a wheel for any period of time doesn't take away the feeling of boredom. It must be time for me to work on being a patient patient.
My lab results as of this morning mark me as Neutropenic as my platelet count went below 50 (42) and my WBC fell to 0.9. The White Blood Count surprises me, because I started receiving the shots that are meant to spur on the growth of more WBC, but I was told today that would take nearly a week. I should have realized that from the treatment my sister Jeanne went through and so I will have to just wait for my counts to get back to the normal person range. While I count the days, of course.
My friends are still amazing me with their kindness and outpouring of affection. I've had a nice small stream of close friends bringing me foods I love (today i had pork chop sammich from Maxwell Street. Damn good) and keeping me entertained as well as can be entertained in this 12 x 10 box. If I didn't have my friends, I would have lost my mind a few days ago, even though the staff in the hospital try and keep us patients happy (i.e., the pina coloda smoothie I'm sucking down from the afternoon ice cream cart while i type), because I am just not accustomed to waiting for things to happen. I much rather prefer to poke sticks in the fire and raise more flames. Perhaps i will start poking at things next week if I get stir crazy. For right now, however, I will adhere to the mantra of all the medical professionals in charge of my health and myself and just repeat "Bored is Good". It's gotta beat the agony of tubes in every orifice and complete muscle atrophy, yeah?

Transplant complete

Now the transplant is done, I'm all better and can get on to getting home, yeah?
Not that fast or simple, my peoples. i wish it were. Now comes the steep and heavy watchful eyes on my poor battered immuno system. I must remain healthy. No infections, no illnesses, no colds, no sneezing, no throat tickles, no nothing.

The transplant itself was indeed anti-climactic. I actually slept through most of it, as the additive they put in the stem cells from Jeanne, made me sleepy when combined with the Adovair(sp?). And today, the day after, I apparently smell an awful lot like creamed corn. Cooking up right here in my little chamber at the U of C Medical Center. Of course, i cannot smell it, as it the odor is oozing from my pores, but those who walk in my small domain comment on it as if I were the Del Monte man himself. The other small side effect I noticed was that with every bag of cells, my face would flush and my temperature would elevate a tad. But after the second bag, I slept though the remainder of the transplant, so I cannot accurately relay if this occurred on every bag.

Yesterday, after I awoke from my restful procedure, my appetite was back on track, and I was ravished and ate a hot dog, followed by some beef panang. Now as I wake this morning, my usual hunger pains that I have become accustomed to having the minute I open my eyes are not with me. In fact I feel bloated and full, even though I am not holding anything inside, at least not that I'm aware. i wonder if one or two of these anti-biotics are bloating me out or maybe it was the MSG in my panang. Either way, I am not hungry as per usual, and that is kind of bumming me out a bit. I do have a bit of nervous energy, but that may be from all of the sleep I've accumulated in the past 36 hours. I suspect that as soon as I am able (when the lounge opens) I will go down the hall and get on the stationary bike, just to calm myself down and perhaps burn off some of this bloat.

The sun comes up as I write and I can't help to think "Another Sunrise Seen, Another Blessing". Little more than three months ago, I certainly was in no shape to even think about moving around and getting down the hall, let alone on a bike of any sorts. All i have to this time is stay the hell outta the ICU, remain healthy, and wait. Tick, tock.

I appreciate all the well wishes, prayers and thoughts that came across yesterday, and I hope you all will see me succeed at kicking cancer's carapace in a righteous manner. When I am well, I will invite you all to a grand party for us all to celebrate together, so that I may show my gratitude in person.

Patience.

Last day of Chemo, today Sunday the 25th.

Today will be my last day of chemo and allegedly this is the day that will do the most damage to my body. This malphalan stuff will make me lose my hair, give me mouth sores and diarrhea. What a Sunday Funday!
Oh, yeah, I had to take the anti-nausea meds first so I'm not all pukey. Hopefully, I get through this with most of the above happening, but my immune system, the one that I have gotten used to removing all illnesses within hours, has been disabled and wiped out in the effort to prepare my body for the transplant on Tuesday. Before Tuesday's transplant comes Monday, my only day off from Chemo and treatments. I'm curious to see if I get separated from my constant companion during this stay at Hotel de University of Chicago, the IV pole. He's not very talkative and most of the time, is just trying to trip me up, slow me down, or hold me back. That rat bastard. I'd like to throw him in the River.
Don't get me wrong, I'm not trying to complain here, I'm just bit run-down and keep getting more run down as my treatment moves along; I was told this would happen and I am prepared as well as anyone could be.
I am grateful for all of my friends who have written me and come to visit me in my 'hotel' rooms. I feel as if I have the biggest support team around and they give me the strength I need to move forward and get out of this cancerous situation. I am extremely grateful for my sister Jeanne's kind donation of time and Stem cells. I'll be writing letters to Santa on her behalf, you can bet on that. I'm grateful for my angel, the lovely Leslie, for without her constant questioning, I wouldn't be as healthy as I am now, and realistically, missing an organ or two if she hadn't started questioning the doctors from day one. She's been the real rock throughout this ordeal, and also the comforting pillow where I can rest my head, reviving my strength for me to continue on and continue my fight.
I'll be out of the hospital in little more than two weeks, and hope to be living my normal life at the beginning of July. I was hoping for the beginning of June, but that would be too amazing for even the best superhero. In all likely hood, that means no Bluesfest for me. Mark my words right now, There will be a Chickenfest this summer and all of y'all are invited. The date will be revealed (or decided upon) when I can fully claim myself to be free of cancer so we can celebrate with beer and chicken-eating.
While I wrote this, the Malphalan was pumped into my central line and this line of type signifies the end of my Chemo. Not the effects, mind you, but the end of mean spirited drugs entering my veins. Hooray for that, and thanks for all your well wishing, prayers, cards, emails and what-nots. I hope to thank you all in person while we eat chicken this summer.
Tuesday is transplant day, so send Jeanne some thanks and Leslie some help so we can all be happy together, yeah?

I get my hair cut twice a year, whether it needs it or not...

(apologies for the sideways viewing)

I'm a big fan of mohawks and think they look supercool.

Cancer hasn't met a guy like me before. I'm about to open up a gigantic can of whoop-ass on Señor leukemia and hope to never see him again.

Thanks to my sister and her donation of time and stem cells, I should be healthy and back to normal style living before summer's start, at least that's what I'm on planning on. The doctorinos are preaching caution and guarded optimism but I can't start thinking of losing any battles in my personal war against the cancer in my blood. Hell, I've amazed myself in the vast difference between pictures I took of myself in January and what I see today in the mirror.

So I've cut my hair in the style of the classic fierce American warrior, as I prepare to take no prisoners and cut the fear out of the word "cancer" right along ridding the cancer from my body.

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!!