Friday, October 29, 2010

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.

Monday, October 18, 2010

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.

Friday, October 8, 2010

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 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.

(and Mark)

Monday, October 4, 2010

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.