Wednesday, March 18, 2009

Ya Gotta Have Friends...

...to make the day last long. More importantly, to knit you things and remind you that there is humor in every situation. A couple of weeks ago, Roxie offered to knit me a shawl and I cheerfully accepted. Who am I to turn down offers of knitted love? And so I've been keeping an eye out for a package and making Jim listen for the mail and for a knock on the door whenever I'm not home. Yesterday, a great big box arrived (pictures tomorrowish, i have to re-charge my camera. the wait will be worth it, it's a big box of awesome!). There were tons of presents in there! Tons!

Naturally, there was the shawl for me. It's beautiful. Roxie also tucked a couple of books in the package for me, the first two of her wonderful Sanna books. If you haven't read them, you should. I am always hesitant to recommend books for other people, I have such broad tastes. But these books are absorbing and easily some of the best written fiction I have ever read, ever. Seriously good books, delicious reading. I started with the third one and couldn't put it down 'til I'd read it through. And then I wanted there to be more. I'm halfway through the first one now, and I am loving every page.

In her infinite Kindness, Roxie also sent a sweater for the alien baby. It's purple, and has eight or ten arms on it. I laughed hysterically when I opened that one. Roxie noted that if I decided not to keep the alien baby, it would make a whimsical hat. And I might just need that. See, I saw the surgeon today. He told me a rather different version of things from the last doctor. The probability is still that this thing is a benign fibrous tumor (recover time on this surgery will be weeks. weeks! damn.) but if it turns out to be synnovial cell sarcoma, I will need chemo and radiation. This will hopefully shrink it, but it will also kill any cancer cells floating around in the fluid around my lungs. If it's cancer, then we're also looking at removing anything that this is touching, which could be quite a lot, and bumps the recovery time up quite a bit. So, I'm trying to think positive and I'm also gearing up for war. We won't know for a few more weeks, we're still waiting for genetic tests to confirm this and let us know if it'll respond well to chemo. More breath-holding and finger-crossing, though to a lesser degree. As always, I'll keep you guys posted.

Here's hoping the rest of your week goes smoothly and quickly and that it's filled with wonderful surprises.

Thursday, March 12, 2009

It's benign!

I didn't want to make anyone wait any longer than they had to for news. I'm home from the doctor's now and I feel like I can actually take a deep breath for the first time in a month. It feels somehow like all of my muscles have all unclenched and relaxed all at once. This might just be the best feeling ever.

Okay, so the medical details. Laslow-Mitford is most probably a benign fibrous tumor of the pleura, but there is a chance that it's a low-grade synovial cell sarcoma. That requires a genetic test to determine, which will take a couple of weeks to sort out. Apparently, the treatment is the same either way--removal. I am so onboard with removal! So we are running full-steam ahead with the removal plan. I contacted Dr. Metz, my cousin's best friend's dad from last post, and he is going to put me in touch with a surgeon. There is a chance that part of my lung may have to come out, and we're not at all sure if that lung will ever recover and get back to full capacity. Once this is all over, I'm going to make sure I start exercising regularly, I want that capacity back!

So, the worst is over. The fear and the stabbity bits are all done, and now we just worry about the surgery. For that, they will have to put me to sleep. Totally non-negotiable. If they won't, I have a friend with a hacksaw and a shop-vac, we can do this ourselves. I want to thank you all again for the warmth and the kindness and the comfort you've given me. Every comment, every facebook post, every e-mail has been appreciated. I think the greatest comfort through this past month (i can't believe it, but it's a month almost to the day. worst. month. ever.) has been knowing that I am not alone, and that there are people spanning the country and even the globe who care enough to say so and to support me. Thank you all for being on this long, scary ride with me. It's not quite over yet, but we've made it through the worst bits. I can truthfully say I couldn't have made it through with my sanity incact without you all. And now, I think it's time to go celebrate!

Tuesday, March 10, 2009

Whew!

That was a whole mess of grump right there in that last post, wasn't it? Thanks so much for the support, and for listening to me vent. I don't know what it was, but suddenly, everything was piling up on me and I was just feeling a little smushed and crushed and crumpled around the edges. Not broken, though. Never broken, right? Right.

There is some good news and some positivity through all this, though. My cousin Maggie's best friend is named Isabella. Momolla brought my aunt and uncle up to speed on the Laslow-Mitford situation and my aunt passed this information along to Isabella's parents. Isabella's dad happens to be Dr. James Metz, one of the foremost pediatric oncologists in south Jersey. Apparently, he wanted to step in and take charge of my treatment and make sure I was being taken good care of and that I was in good hands. My aunt talked him down a little, and he sent me his personal cell phone number and the message that if I had any questions, needed any help or wanted a second opinion, I could call him. This level of generosity from a total stranger just floors me. Here I am, his daughter's friend's cousin, and how tenuous a link is that? And yet, he was concerned enough to reach out and offer any help he could. I think when I am feeling a little more grounded, probably tomorrow, I will call him and thank him for his kindness. And ask him a few questions. I'm not exactly a pediatric oncology patient, but he might know of some resources I can use, especially with the insurance company.

Speaking of those stupid assholes, I'm going to e-mail that same aunt and ask about legal aid. She's a lawyer and works in a federal court building so she probably has a much better idea of what's available than I do. And she's pretty awesome, so it'll be nice to catch up. I feel a little bad I haven't let them know what's going on before, but what with trying to keep everyone updated, some of the people I love have slipped through the cracks. As it is, there is a list that Jim and I divide up after every procedure for who needs to be called and updated. Somehow, though, I always miss someone.

Through all the fear and the nerves and the waiting, I have been surrounded by the most phenomenal support and just covered in kindness. As with anything in life, there's sweet to go with the bitter. I truly am blessed with wonderful women who have stepped up to offer comfort and warmth and humor and caring. And tons of hugs, whether virtual or actual. Thank you all, for letting me fall apart a little, and for giving me strength when I need it. I couldn't do this with any degree of grace were it not for you all. On Thursday I meet with the doctor again, and I'll let you all know how that goes as soon as I do. I'm keeping my fingers crossed and keeping my mantra going through my mind.

Monday, March 9, 2009

Murt...

You know you've been in a relationship for a while when you start to develop your own language. See, murt is a word I made up a while back when I was grumbling and muttering and Jim and I (and even colleen) have put it into use. Murt expresses disdain, frustration, anger, sadness, and general grossness of feeling. It's a multi-use word, and very handy for when you just can't put your finger on the right word. Today, I am murt. I am the mayor of Murtistan. I am the Murtfullest citizen of the great planet of Murt. Today is not my friend.

See, I found out today that my PET scan is canceled. Really, that's not so terrible, I can re-schedule it. But since my insurance company (we'll discuss them more later on. they're also on my shit list) only has the inconclusive results from the first biopsy to go by, they won't approve a PET scan. Now, they know the results are inconclusive and show inflammation. But they choose to interpret that as not showing evidence of malignancy or something like that. And there are no results from the second biopsy yet. Naturally, since no stage of this has been easy, Pottstown couldn't identify the alien lung baby and had to send samples out to the Mayo Clinic or to an Air Force (or maybe army, i forget. i was a little overwhelmed when this was being discussed, having just been poked with many sharp things) base in Washington, D.C. We are still crossing our fingers and waiting for results, hopefully we'll still know what's going on by Thursday. The bright side of this is that I'm able to have a real day off tomorrow. The down side is that if I do really need this test, I'll have to wait even longer for it, since it's tough as hell to get a PET scan appointment.

And my insurance company sent me some paperwork today letting me know that I have several claims pending review, since this might be a pre-existing condition. If they decide, upon medical review, that this is the case, I could come out of this whole wonderful experience with tens of thousands of dollars worth of debt. The insurance company is sending me a questionnaire, I'm going to see what I can do about this. I somehow doubt that this is a pre-existing anything. And I'm going to refer to this as an alien lung baby and declare myself the foremost expert in the area of alien lung babies. That way, I can tell them with absolute certainty that this is a recent development. And then we'll be done. And if they won't pay for this for some reason, I'm going to have to auction off everything I own just to get this handled and I might cry. And be living in a box. Because, you know, this just wasn't tough enough before.

And to top everything off, a little old lady called me a bitch tonight. She came in and told me she needed a headlight put in and that she had a church meeting in fifteen minutes. She was really mad when I responded that we had two people in the shop in front of her and that I could get her car in the shop in about half an hour. Things got better from there when I refused to have my mechanics stop working on the cars that they had in the shop so they could fix her problem immediately (one of the customers had been there for a couple of hours. i would like to see the old bat explain to the customer waiting for her car back what made her so special) and in front of a customer she called me a bitch. I really, really wanted to ask her why she's special. I really, really wanted to tell her to suck on my dick and choke on it. I especially wanted to tell her to get out, that I didn't need her brand of crap because I have a lot of crap in my life right now. I wanted to tell her that there is an alien baby in my lung and that I don't give a hot, wet shit about her car or her church meeting and ask her if she talked to god with that mouth. But that seemed a little inappropriate, since there was a friendly customer standing right in front of me who didn't need to hear any of that. And actually, he gave me his business card and told me that my manager could call him if the old bat called a complaint in to my corporate office. He'd stick up for me and tell everyone how professional I was. So that guy's cool in my book. The old bat, though... She'd just better hope I don't see her car parked somewhere. I know a lot of ways to make it so your car won't start. Because to demonstrate her sweetness even further, she drove around to the back of the shop to talk to my mechanics directly. They said they couldn't help her and she told them how kind they are. She also told them I'm going to hell. When I came out to tell her again that I could get her car pulled in shortly, she told me I would get my reward. I told her to have a nice evening. Sometimes, I hate people.

And my lady boss has a new favorite at work and I am not it. She's prepping him to be the assistant when my dude boss who gets things done and everyone really likes leaves. And I think that'll go poorly. I'm also already getting shit from her about the two weekends I requested off (they're a month apart. nobody else wants the time off. there are no conflicts. none) and she told me that she'd "been really lenient with this." and we couldn't discuss anything any further because there were customers to help. But, um, excuse me? Been really lenient? There is an ALIEN BABY ON MY LUNG! I am not making this up, could not make this up if I tried. I have worked while going through some pretty rough issues here. And right before and right after some pretty rough medical stuff. Screw your leniency. In fact, screw you, woman. I called out once because I had just had tubes shoved down my throat and had a fever and was coughing up blood (no worries, the doctor's office said that it was normal. gross, but normal. and the fever was related to the plague i'd had for a while. not just any cold for me, i get the plauge) and she wanted to know if I was sure I wouldn't make it in. When I told her there was a chance my lung would collapse with this last biopsy and I might maybe spend a week in the hospital she said, "Oh, so I should have Jeff close that Friday, then?" So. My job. Not my very favorite right now.

So yeah. I have had it with today. And really, with my life in general right now. I'm trying to let the shit from work roll off my back because there are so many more important things for me to deal with right now. And I'm trying so hard to stay positive and to be strong and to keep moving forward with my life. I'm trying and trying, and right now, I don't think I'm doing a very good job. Honestly, right now I feel kind of broken. It's me vs. life and life is so kicking my ass today.

Saturday, March 7, 2009

No News

...is good news, right? Right. At least for now. Still no biopsy results. I swear, if they didn't get enough of a sample, the good doctor can just guess. As long as the alien baby comes out, we're good. At least the only thing left is a PET scan, which Momolla informs me will make me glow in the dark for a few days (they'll inject me with radioactive stuff. well, i only live a couple of miles from the nuclear plant, so i guess it's no worse than usual) but that's just an injection. I can totally take an injection. I meet with the radiologist on the 12th to see what the alien baby is, so I will let you guys know as soon as I do.

But let's not dwell on the unknown and the fear right now, eh? More than ever, I've been trying to concentrate on the divine in the chaos, the moments of grace. I got rather an extended one this Thursday. Through the last three weeks (is it only three weeks? gods, it feels like forever), Jim has been my constant source of strength and humor. I'm reminded why I love him so much about seventy-five times a day. Even though he's spent practically all his waking time with me or taking care of me or listening to me talk, he still wants to spend time with me. In fact, he still wanted to go on a date. So, naturally, we did. We didn't go to a fancy dinner, we didn't get dressed up. But after we'd come home and showered and napped after the MRI (i always get the crack-of-dawn appointments. insult to injury) we headed out to the Philadelphia Premium Outlets, a kind of outdoor mall full of, what else, designer outlets. The weather was warm and mild and the sun was out and we were able to people watch (one of our favorite hobbies together) and have lunch. It was nothing momentous or special or even really exciting. But for a couple of hours, we got to be just be. We weren't going to any appointments, we weren't talking about Laslow-Mitford, we were just wandering around, looking at all the "cheap" stuff that was still much too expensive and making fun of people for buying the ugly overstock that ended up in the outlet for a reason. Or for wearing ugly shoes. Or just because they were there. And we got a ton of free samples in the candy shop (we ended up getting a second round when we went back in to actually buy some. score!) from the nice ladies therein. All in all, it was a lovely afternoon. It was nice to get to spend even a part of a day off doing something fun and positive and relaxing.

There's actually been less knitting lately, since I've been spending some time sleeping and more time at work. But eventually, I'll finish something worth posting. And then we can pretend like this is a real knitting blog or something. I hope the rest of your weekend is warm and relaxing and that you find a moment of grace to hold onto when you need it.

Wednesday, March 4, 2009

Emo Post!

'Cause you guys said I could be emo. Biopsy #2 is done now, and I am home, recovering and drifting around in my head. They gave me a percocet after, so I'm a little spacey. I'd like to say I acquitted myself well during the procedure, but that would be a lie. And one does not lie to one's blog. This hurt. This hurt a lot, and it continues to hurt, good drugs or no. I didn't move the whole time, but I cried like a sissy when the good doctor man stuck the big needle in me. I couldn't help it, 'cause well, I hurt. I have a pretty high tolerance for pain (i've got tattoos and piercings, i can handle pain) but this was extraordinary. Why this never occurred to me, I don't know, but there are definitely enough nerve endings on your internal organs that you can feel it when they're being poked at. And the sensation of the needle piercing the lining around my lung was a) gross b) weird and c) awful. Thankfully, no lung collapse today. But my goodness, I hurt. And I couldn't flinch or anything, so I just laid there and cried because I was tired (i think i managed about an hour and half of sleep last night, cumlative) and scared and lonely and hurt and for the life of me, I couldn't keep myself together. So yeah, that sucked. The medical staff were all really kind and helpful, one particular nurse held my hand and told me it would be over soon, and I was too busy gritting my teeth to thank her. And thinking mean things about my doctor man. There was some of that, too.

Anyway, I'm home now and that whole awful mess is behind me and it wasn't even as terrible as it could have been. Depending on how things go, I could have the biopsy results in a few days, or the pathologists might be stumped and have to send the samples out to some exotic research centers for more diagnosing. I know one thing for sure, though. If this biopsy doesn't tell us what this is, one way or another the mass is coming out. I am not sitting through another biopsy, and no force on Earth will compell me to. In fact, the next person to suggest they might like to poke around my lungal region with anything sharp will probably get beaten. Or stabbed. I have nice, pointy knitting needles.

I'm just feeling battered and sorry for myself, which I expect will pass when I get some sleep. Jim has taken the bestest care of me since we woke up this morning, he even bought me chocolate. Isn't he a sweetheart? I mentioned doing the dishes and he told me that my only job today was to take a nap, he'd handle the cleaning. And judging by the way everything feels all swimmy now, it's probably time to go do my job.

Sunday, March 1, 2009

I'm so Lame...

...I had half a post written the other night before I realized it was entirely too emo. Like totally way too emo. So that one got scrapped, and I decided it might be best to avoid blogging late at night when I'm tired and scared and have taken lots of cold medications.

I haven't updated you guys on the health front in a couple of days because there's not much to say, really. My next biopsy is this Wednesday, and I have to be awake for it. I met with my interventional radiologist (isn't that the coolest title ever? it sounds like he's the guy you talk to if you get hooked on x-rays) and he explained how this one would work. Apparently, he sticks me with a (relatively, he swears it's not real huge) needle in the chestal region and then puts a smaller needle in that one to take various bits of the alien lung baby away. I have to be awake for this, even though they can only numb the skin (there will be a "pinching" sensation when he punctures the lung linings. pinching. right. i've heard that one before.) because sedatives interfere with your breathing and there's a chance my lung might collapse.

How cool is that? Now, I could just have a smallish bit of a lung collapse (the chances are somewhere around one in four, roughly), in which case they basically just keep an eye on me. I could have a mediumish lung collaps, where I get a nifty drinking straw and mechanical device put in my chest for a couple of days. Or, and this one is pretty cool, I could have a rather largeish dramaticish lung collapse where I get a garden hose put in my chest (i swear, he called it a garden hose. i like this guy) and a week at the hospital. The odds of that are pretty small, but they exist. I'm trying to ignore the possibility of lung collapse entirely, since I am rather younger and healthier than the nice doctor man's average patient. But there's a little part of me that keeps thinking, why would this part be any easier than the rest of it? Thankfully, this should be the last biopsy they need. If they still can't tell me what the alien baby is, we resort to the angry scared Emily who tells the nice doctor to take the alien baby out and decide what it is later because she is tired of being poked and prodded and stuck and examined. She is also having some chest pain, and is finding that walking up the stairs leaves her panting like she's just old or something and she finds that unacceptable.

But some good has come from this ordeal. My darling Momolla has bowed to popular pressure, and is making me a sweater. I'd like to thank you all for supporting my decision to embrace my dad's DNA and use an unpleasant situation to extort presents from my family. I do believe that if it were just me begging for a sweater, I might still be cold and unloved. But thanks to all of you choosing to back my play for knitted love, there might even now be something pretty and blue and warm for me on Momolla's clever needles. And speaking of knitting love, Galad's lovely daughter Nicole sent me some get well soon yarn, which absolutely made my day. She also sent me a lovely letter telling me how many people are pulling for me and telling me not to "let the bastards grind me down." I think Nicole and I would get along great!

Really, if I make it through the next few weeks with my sanity intact, it will be because of my amazing support group. Your concern and your support have been a huge comfort to me. All your warmth and kindness and humor, as always, give me strength and hope. It's a great feeling to know that whatever happens, there are people out there who are rooting for me. I'm knitting on, and maybe by the time this is all over and done with, I'll have something to show for it. And maybe soon, I'll have a reason to update my blog with something other than gloomy medical news. I hope this new week is warm and enjoyable and productive for you all.