10.13.2009

back

So I'm back in the hospital again. It's been two weeks as of today. I'm going a little crazy from being so isolated, but things have finally changed a bit, so this week hasn't been quite so boring.

I'm in here because since leaving HUP, the amount of inflammation in my lungs has gone up a lot and my oxygen needs were up to 100%. Up until now they have been giving me tons of steroids, but having little success in reducing my oxygen requirement.

As of yesterday they had reached a point where they felt that I needed to have an open lung biopsy to determine whether inflammation or infection was the culprit. Really to rule out infection and start cytoxan treatment or to pin point the unlikely infection. We needed to rule out infection because the cytoxan would wipe out my immune system and an infection could kill me.

Open lung biopsy is not a simple procedure. The technique that they use is video assisted, so it's simpler than the old technique that required a four inch incision between my ribs, but it still requires general anesthesia with intubation. They go in and take three or four thumbnail sized chunks of lung tissue then analyze them for a difinitive answer.

At that point, the plan was to start cytoxan and proceed with the full stem cell transplant. So big changes, fast.

Last night, however, I had a repeat CT scan and apparently the steroids have finally started working and the inflammation has been decreased by half since last week. So it looks as if we don't need a sample of the tissue to determine what the cause is because infection wouldn't respond like that.

So now I'm waiting again to talk to the pulmonologist and oncologist about what we do now. From conversations we had yesterday, my guess is that we'll just continue on with the cytoxan treatment and get this transplant moving, but who knows, they may have other ideas.

So that's it for now. I'd update more often if life was less boring or if I had a real WiFi connection from this room - I love my iPhone, just not for long correspondence. So I'll keep in touch as I know more.
Mobile Blogging from here.

9.22.2009

Alive and Working on the Kicking Part.

I’m back.

Sorry to worry you. If I’d had the ability I would have given an update, but things were bad and I was unconscious.

I’m writing now (I finally have a computer and internet access!) from a physical rehabilitation facility. The last three months I’ve been residing at the Hospital of the University of Pennsylvania. Between my last post and this one, well insanity is one apt way of describing it.

July 4th, while most of the nation was enjoying barbecues and fireworks, I went into complete respiratory failure, was intubated, and put on a vent. I don’t remember that day, thank god, or any day for the remainder of the month of July, so I’ll tell you what my wonderful family and friends, who stayed by my side night and day, have told me.

After being intubated the first time, I was extubated for two days before having to be reintubated. In addition to respiratory failure, I had kidney failure and came perilously close to heart failure. My body swelled up with edema so badly that my eyelids could not close over my swollen eyes. I was running high fevers nearly everyday, but the doctors could not find any source of infection. Even though they couldn’t find a cause for infection, my white counts were elevated and I was treated with tons of antibiotics and antifungals, including Vancomycin, which is supposed to kill pretty much anything. My lung collapsed at one point due to a pneumothorax and a chest tube was inserted to try to relieve the pressure. I had a jejunal tube inserted to allow for the administration of tube feedings directly into my small intestine and at the same time they inserted a G tube to drain the contents of my stomach continuously and performed a tracheotomy. There were more than a few times that the doctors just didn’t know what more to do for me. They didn’t think I was going to make it several times, so much so that they told my parents to say their goodbyes and to have my family come say theirs. BF says that he and my mother were actually talking about funeral arrangements at one point.

But through what was even referred to by the doctors as a miracle, I pulled through. As scary as it was for all of the people who care about me, I feel like the lucky one. I was thoroughly sedated and paralyzed (they said that the levels of drugs that they had to use to keep me unconscious was enough to kill most people). I don’t remember a thing; I woke up after being extubated thinking that it was still early July and was blown away to learn that it was early August.

Extubation wasn’t the end of my fight though. Once conscious I experienced shock and adrenal insufficiency syndrome, brought on by the discontinuation of the bolus doses of prednisone that I had been receiving while intubated. I was also still on the ventilator and had to be weaned off of that, but I’m happy to say that my oxygen requirements have dropped from needing total support to only requiring two liters of O2 by nasal cannula.

Once the shock and adrenal insufficiency resolved I was left with one major problem: the paralytic agents that they had to use to keep me in sync with the ventilator left me with severe neuropathy and muscle weakness. I couldn’t move below my neck more than a twitch of my hand. Throughout the last month and a half I have regained control over most of my body. It started at the top and has worked its way down so that now the only thing I can’t do is move my feet, and even that is getting a little better everyday.

By the end of August I was well enough to leave the ICU and return to one of the pulmonary floors in the hospital. You see the initiating cause of all of these symptoms and syndromes seems to be that I was aspirating stomach acid, which caused aspiration pneumonia. Both lungs were almost completely occluded in the xrays. Apparently the pneumonia just caused a cascade of problems, activating an immune response in my screwed up immune system and affecting a host of organ systems. So only naturally I ended up on the pulmonary floor especially since the entire point of me staying in the hospital at that point was to try to decrease my oxygen needs and get me off of the trach. That happened pretty quickly, but just as I thought I was ready to go to rehab my body threw me another curve ball: methemoglobinemia. Methemoglobinemia is an extremely rare side effect of an antibiotic called dapsone that I was taking to prevent me from developing PCP pneumonia. Methemoglobin is a kind of hemoglobin that does not carry oxygen and high levels of it can cause all sorts of lack-of-oxygen problems; mine was that it increased my oxygen needs three-fold overnight. It was a set back and few days of testing before the arterial blood gas was drawn and the docs figured out what the problem was. It was another few days, after the discontinuation of the offending antibiotic before my O2 saturation came back up to normal. Then of course they wanted to watch me for a few more days before talking about leaving for rehab. By this point I was jut about crawling out of my skin, aching to get out of there.

When I finally got the okay for my doctor to move on to rehab I came upon yet another hurtle; my health insurance company decided that I wasn’t sick enough to go to an acute rehab facility and wanted me to go to a nursing home instead. Now my problems with that were many. First and foremost, at a nursing home I would get about a third as much time each day doing rehab than in an acute care facility and, damn it, I couldn’t stand the idea of stretching out my rehabilitation for any longer than absolutely necessary. Second, I’m only twenty-five. I would be, for all intents and purposes, alone in a nursing home where most of the residents have at least forty years on me. The doctors at HUP agreed; their biggest concern being my often-sudden decline in health and the fact that I get tachycardic and my oxygen saturation tends to drop pretty significantly when I do any physical therapy (physical anything really). So we appealed the decision from all sides. BF filed a personal appeal and the doctors filed a separate appeal and after a rollercoaster of emotional buildups and letdowns, we finally won the appeal on Friday and I moved into my new digs Saturday afternoon.

I’ve already started PT and it’s going great. I still can’t use my feet well, but I’ve learned to transfer in and out of a wheelchair, I can do all of the personal grooming and dressing stuff again, and I’m getting pretty good at walking with the walker with minimal support from the therapist. Not to mention that I can type and read again. That was really the worst; my fine motor skills were so bad that I couldn’t change the TV channel myself or turn the pages of a book, so I spent my time watching one TV station with only mealtimes and visits from the fam to break up the monotony.

Now, I’m busy, busy, busy. They make us get up and dressed and into the dining room for breakfast by 8:30, I have physical therapy at 11:00, followed by lunch in the dining room at noon, then I have occupational therapy at 2:00, followed immediately by another round of PT at 3:00, and the day ends with dinner at 5:30 back in the dining room. I’m getting pretty good with the wheelchair and that’s where I spent all of my down time between activities (intead or sitting in bed like I had been). I was pleasantly surprised today when I realized that I had been out of bed all day for the first time in three months.

So that’s my story in the smallest nutshell I could realistically fit it in. I’m still learning what happened in July through the stories that my family is feeding me bit by bit. While I’m really glad I don’t remember anything, it breaks my heart that I had to put them through the emotional rollercoaster of not knowing whether I’d live or die from one day to the next, facing the possibility that I would end up a vegetable or permanently paralyzed, and just the overwhelming stress that they must’ve felt at being unable to do anything to make me better and not really knowing why I got so sick to begin with.

Well, I’d better get some sleep; they’ll be waking me up in seven hours and I have another tough (but rewarding) day ahead of me tomorrow. I have my laptop now and wireless access (my room at HUP was a dead zone) so I’m really back and I can return to writing more frequently. I’ll certainly be sure to keep everyone apprised of my progress and I’m sure I’ll elaborate on the goings on of the last three months in an upcoming post. I definitely still have a lot to think about and come to grips with and as my blog is my little slice of therapy, you all get to hear whatever it is that comes out of this insanity.

Thanks for the concern and I’m sorry for the worry that my sudden silence must have caused for some people.

G’night!

6.27.2009

Like a Rubber Ball.

So I started this post last night before I went to sleep and when I came back to it things had changed so much that I had to throw out the old one and start again. I won't give you a play-by-play of this week, partly because I've been running fevers and there are parts that are a bit blurred, partly because I've been on an intravenous dilauded pump that gives me .4mg every time I hit the button, and mostly because it will bore you. So let me tell you where we are today.

The infection in my lower abdomen is gone. My belly is still a little sore and a little fatter than I remember it being, but otherwise, back to normal. So that's alright. Except the fevers haven't gone away completely and they think that I have pneumonia.

In the last 24 hours, my condition has gone from scary and uncertain to stable and steadily improving. Last night I was on 100% oxygen by non-rebreather mask and my arterial blood gas readings were still showing a drop in the oxygen in my blood. They were getting constantly closer to having to intubate me and put me in a ventilator. Instead they tried a PH drug called Flolan or epoprostenol. When inhaled, it works to dilate the blood vessels that it can get to, so with the pneumonia blocking a portion of my lung, this drug is working to maximize the potential of the remainder of my lung tissue. Usually this this drug is given by way of a constant subcutaneous infusion pump, but they wanted a concentrated rather than systemic effect, so I've got an awful, heavy, awkward mask on that I might be able to take off for more than ten seconds sometime tomorrow. But it's working! I'm down to only 40% oxygen and my blood gasses are looking great. I have a PICC line and a direct arterial line so that they can take blood gasses frequently without needing to keep stabbing me. It's nice being stick-free. By Sunday my veins had become so inflamed that they weren't able to get a line in one at all and they tried everywhere; I had an intra-juggular IV for about ten minutes before it just failed

They're not actually sure if this is a pneumonia. It could be also be inflammation of my lung tissues. There are several big problems standing in the way of us figuring out the answer to that question. The first is that they would need to do a bronchoscopy. I'm not breathing well enough for bronchoscopy without a ventilator, which can be very dangerous and difficult to get off of, so that's not an option.

The second complication is that they've discovered that the small a hole in my heart that's been there my whole life has now started shunting deoxygenated blood from my right atrium to mix with oxygenated blood in the left, lowering the oxygen concentration for the entire combined volume of blood. This was apparently caused by the pressure in my heart becoming high enough that it further opened the small PFO that was there, and formed the shunt. The PFO can't be fixed now though. If they repaired the damage and blocked the hole, the blood would go back into my lungs at a high enough pressure to do some real damage.

So since they can't truly assess what the real problem is and because they can't repair the damage to my heart yet they're attacking it from three sides: the Flolan to open up my airways and decrease the pressure of the shunt, intravenous antibiotics for the possible pneumonia, and prednisone for the inflammation. I'm also on IV heparin to maintain anticoagulation, IV dilauded, self-administered up to once every ten minutes, for pain, IV zofran for nausea, and all of my regular pills.

So that's it for now, I'm going to go take a nap The doctor just informed me that because I'm down to only needing 40% oxygen they're going to start weaning me off of the Flolan and I may be done with this damn mask sooner than we'd thought. Yay!





6.26.2009

quick update

So today's deal -comparing the CT from Tuesday to yesterday's - shows that the pneumonia is a little bigger and there's more fluid in my lungs. My ABG isn't going up with as much oxygen as they can throw at me, so they think there's a shunt. And today I'm having an echo with a bubble test to determine whether my formerly nobigproblem PFO could be the big problem. The possibility that I'll need to be intubated is still very real. No fevers though! Alright, I'm gonna try to sleep some more. Just wanted to give you an update.

6.25.2009

surreal

I'm getting the feeling that describing a fever is a bit like describing an acid trip. Everyone would be bored. So I won't, but let me just say Whoa! My fever spiked again tonight a bit before midnight, went well above 102, and just broke a half an hour ago. It was like coming back from a different planet to one where I'm suddenly cold and drenched in sweat and sprouting thirty different wires.

I'm going to try to sleep now, get some rest before this place starts buzzin'. I'll try to write more later.

6.19.2009

Joy of joys

I have a fever of 102.2F, my belly is tight and bloated, it aches, and it's getting more difficult to breathe.

This sucks! We played it super-safe to avoid ovarian hyperstimulation ayndrome, but apparently not safe enough.

They want me to go to HUP to be evaluated, but of course it's rush hour and getting there would take an hour and a half or more. In addition to that, there's no way I trust myself to drive right now, the fever's got me all shaky, I can't take a full breath, and sitting upright hurts. So I'm waiting for BF to come home from work and give me a ride to my usual hospital back near where we lived before.

And I can't find my godforsaken pulse oximeter, so I can't test the oxygen in my blood. My lips are feeling rather tingly though, and that's never a good sign.

This really, really, really fucking sucks.

6.18.2009

Bloaty

Well, I feel like crap.  A whole different kind of crap today than yesterday or last week.  My belly is huge.  It feels like it's been inflated like a balloon.  They warned me that this could happen.  Apparently after they empty out the ovarian follicles, they fill back up with fluid and blood.  There's also a fair amount of cramping involved.  Sucks.  

Anyway, I got a call this afternoon and six of the sixteen embryos were successfully fertilized and frozen today.  One more did get fertilized, but two sperm got in and that's just twenty-three too many chromosomes for a viable little embryo to have, so it was a no-go.  

I'm going in on Monday to talk to Dr. G. about removing an ovary for cryopreservation.  And that's it.  No more fertility drugs.  No more waiting.  Until the transplant is over, I don't need to spend any more time worrying about procreation.  Thank freaking god.  I'm sick of it.  It's going to be so nice to stop worrying about this and start worrying about...shit...chemo.  

Well it never stops, right?

6.17.2009

Gooooaaallll!

I'm in no small amount of pain after the egg retrieval this morning, so I'll be brief.

It was more successful than we'd even dared to hope. They retrieved sixteen eggs, meaning we got an egg from nearly every follicle they measured on Monday. Amazing, really. One of the top retrievals that they've ever had at this clinic.

Tomorrow, I'll know how many are fertilized and will be frozen. And now, my sweet boyfriend is back with my chicken nuggets and vanilla milkshake. If only Chik-fil-a offered an "add a shot of morphine" option.

6.15.2009

Forty Sticks in Fifteen Days...

But I'm Done!

Not really.  I get to take Lovenox twice more before the retrieval Wednesday morning and BF gets to give me my Novarel trigger in an hour and a half, but that's pretty damn close to done.  I've never been so happy to be through with something in my whole life.  Those things didn't hurt Day One, but Jesus Christ!  By last night I was hesitating to pierce my skin because they hurt so bad.  Also, every single little puncture wound bleeds for what feels like forever now because of the injectable anticoagulant.  I made the mistake of wearing a light yellow shirt on Saturday and ended up scrubbing a dozen little blood stains (and a couple big ones) off of it with a toothbrush in the bathroom sink (shirt is now perfect and stain removal is strangely gratifying).   

Okay, that's it for now.  Just had to show someone my poor bruised belly.  Not as bad as it could've been judging by that first stick, but generally aggravating.  I wish that was the worst of it, but I couldn't work up the nerve to ask the ultrasound tech for a picture of my humongous ovaries for my blog.  

6.12.2009

Nothing As It Seems

I just got back from yet another trip downtown for yet another ultrasound.   My ovaries are so freakin' huge.  They hurt now.  It sucks. 

The good news is that I've now got seven follicles on the right side and six on the left, Thirteen! Much better odds.  Even my nurse expressed how pleased she was with the increase in number.  And my uterus is looking great - a perfect state for transferring embryos.  If only that's what we were doing.  But it bodes well for a successful transfer once we're ready for that, if we're ever ready for that.  Have I mentioned how much a really really really want to get pregnant, like myself, without having to use a surrogate? Well, I do.  And this whole process has only increased that desire.  Now, I just have to talk BF into having more than one kid, but we'll cross that bridge when we get to it.   

The crappy news? While the number has gone up, the size is still only creeping up and they're not ready for the retrieval that we had anticipated would happen on Sunday.  So now it becomes a day-to-day thing.  I have a 20mg syringe of Lupron sitting in my fridge waiting for the word to go ahead and trigger, but until that comes it's Gonal-F, ganirelix, Menopur, and Lovenox along with daily blood work and ultrasounds.  I forgot to mention the Menopur!  I got a call from my nurse yesterday afternoon, around two, telling me that I had to go back down to the office to pick up a new drug, Menopur, which will help to elevate my LH level and produce better quality eggs.  At the time I was at the local hospital waiting to get an x-ray on my foot to evaluate for a possible broken toe (I don't know what I did, but it hurts like hell and is nice and purple) after which we were going to an appointment for BF to be evaluated for eye surgery to correct his nearsightedness.  We had to rush to drive all the way back to University City and then back past our house to King of Prussia.  We did it, getting to the eye doctor's office just five minutes late for his four o'clock appointment.  

So that's my current insane situation.  I'm going to go try to take a nap before my math test this afternoon.  Then, we're going to see Eddie Vedder tonight!  I'm so excited, it's going to be lots of fun!  But now, I sleep.

6.11.2009

...from the University of Pennsylvania Bookstore.

It's awesome that all of the college bookstores in Philly are run by B&N now. Certainly makes them more useful and the ability to have a vanilla latte while shopping for algebra books is rather pleasant.

I just had my third ultrasound - nine follicles on my left ovary, five on the right. Yay! The fellow who did the ultrasound said that she thinks it calls for another day of elevated stimulation and another ultrasound tomorrow morning and then I should be ready for either the Ovidrel or Lupron (up to Dr. G.) tomorrow night and egg retrieval Sunday. Very Exciting!

So I just thought I'd give a quick update while I'm sitting here. BF is at a VM Ware discussion group nearby that should let out in a few minutes. We got to drive down here together today; it was nice to have the company (sorry but LM is not a great conversationalist: if he's not tellingcme how to drive, he's either whispering to himself or ignoring me). Now we're going to go get some brunch and then go enjoy this overcast, humid, almost chilly, glorious summer day!
Mobile Blogging from here.

6.09.2009

The State of Affairs.

I had my second ultrasound today.  It went much easier than the last time.  The key to this ease: I decided that it would be less tiresome to wake up earlier than to drag the four-year old in to the city with me.  I was out of the house by seven, at UPenn by eight, and home by nine-thirty.  BF had to go into work an hour late, but LM didn't have to suffer through getting drug out of bed early only to have to sit and wait and be quiet.

It was an insane drive downtown and I'm really glad LM wasn't in the car.  It was spitting when I got into the car, but as soon as I pulled out of our driveway it started pouring.  As I got on I-76 the sky went from cloudy to slate gray and by the time I was close to the city I could see bolts of lightning crackling through the Philadelphia skyline.  As I got off and pulled onto Market Street, what I thought was bad became drastically worse.  The light said eight at night rather than eight in the morning and the deluge was nearly too much for my wipers to take.  I silently thanked whatever higher power there may be that the doctor's office has a connected parking garage as I watched people's umbrellas flip inside out while they struggled down the street, completely drenched.  

Once inside, things went as smoothly as I could have possibly hoped for.  I checked in at the office, went down to the lab where I sat for all of half a second before being called back for my blood draw.  As soon as I got back upstairs, my fabulous nurse was waiting and took me right back for my ultrasound.  My follicle counts aren't very high, five around twelve millimeters on my left ovary, four around the same size on the right side.  The nurse said that that's what they expected since they were trying to play it safe so as to not induce OHSS.  I'd be lying if I said I wasn't a little disappointed by the count.  It really limits my options after retrieval.  I had hoped that we'd get enough to be able to freeze a few unfertilized eggs in addition to the embryos, but the doc said to assume that we'll only get half as many eggs as follicles and half as many embryos as eggs.  I know that it only takes one to have a baby, but I don't get a second go at this.   I'm going to try not to worry about it though.  I know it won't help anything and that it's out of my hands anyway.  We can't afford to repeat the IVF if it doesn't work and we won't even know if it fails until I'm sterile.  I also don't want to sound all gloom and doom because I'm not.  All other signs show that there shouldn't be anything wrong with the number or quality of my eggs and BF is equally fertile, so maybe we'll get more eggs than expected, maybe more will fertilize, maybe the embryos will all be fabulous.  Also, if that doesn't go my way, maybe they'll be able to successfully develop eggs from the ovarian tissue that we're freezing and then there's always that very, very slight chance that I won't be sterile after the stem cell transplant and I could get pregnant naturally.  

And on that note... I've decided to forego tubal ligation.  Surprisingly, it was my dad's concern that made me start thinking about finding another option.  While we were standing in line to ride a roller coaster at Hershey Park, he asked whether or not I had to do it or if it was a choice I was making.  I've always been really close with my dad and I always weight his opinions and concerns heavily.  This time, it was really the tone of his voice and the look he gave me that made me think that I might want to give this one some more thought.  So I thought a bit and when Dr. G. asked me during my Day One ultrasound whether or not I still wanted to do it I said I wanted to reexamine my options.  She said that she was relieved that I said that because she didn't think sterilization was the best option for me.  I had decided on tubal ligation because I thought that there weren't any other roads open for me.  Every gynecologist that I went to was reluctant to give me any of the hormonal forms or an IUD because they weren't comfortable enough with my illnesses or medications and I don't feel comfortable enough using barrier methods by themselves.  Dr. G. said that she has no problems with giving me the Mirena IUC and that she'll be glad to do that instead of the ligation.  Now my only problem is that my HMO doesn't currently cover Mirena.  I don't think that is going to be a big problem though because they'll pay for the Copper-T IUD and there are definite medical reasons that I can't get that one and that Mirena is the better choice for me, so I'll just have to apply for pre-approval and then appeal it if they deny me coverage.

Alrighty then, not much else going on, not much else to say.  Just taking things day by day, doing what needs to be done.  I haven't noticed any serious side-effects from the hormones yet, so we'll see how things go.  At this point we're looking at egg retrieval on Friday or Saturday.  Exciting!
 

6.04.2009

The School Issue.

When I was seven, my parents separated.   Luckily neither of them actually went very far.  They lived in the same school district, just a few blocks from one another.  This eliminated lots of potential issues.  Neither parent had to be "the weekend parent" or the "weekday parent."  If a book or shirt or school project was left behind at the other parents' house, it wasn't a massive undertaking to retrieve said item.  But my parents were by no means typical when it comes to shared custody.  We went on family vacations together, each was always friendly with the other, welcome in each other's homes, at holidays, etc.

Our own custodial situation is a bit different, though we have managed to maintain a good degree of friendliness and amicability, sharing birthdays, dinners, etc.  Location is the biggest difference.  BF and I have remained in the same general area that he and his ex lived in pre-divorce, in fact, we're seriously considering moving back into the home that BF and his ex purchased together (yeah, I thought they sold it too, I'll explain later).  However, LM's mom has no intention of living in the suburbs; she's decided to become a city dweller.  She's living in the 'burbs now, but isn't pleased with that and is planning on moving before LM enters kindergarten.  This leaves us in a bit of a quandary.  We already live in different school districts a good distance from one another and when she moves it will be about a forty-five minute drive between us.  So, it doesn't really seem to make much sense for either parent to have such a long drive to get the kid to and from school for half of the week.

As a result of all of this, we've been looking at private schools.  The problem is that while were solidly middle-class, we can't afford to pay $20k a year for elementary school.  In addition to that $20k a YEAR for ELEMENTARY SCHOOL!!!  I'm morally opposed to the utter ridiculousness of that.  I didn't even pay $20k a year for college!  So we've found some Montessori schools that fall into the "affordable" category, but we still have some reservations about the amount of academic success that they are going to provide and the school that we like does seem a bit run down.  

The other option that we've uncovered seems like a real gem.  It's only $4k a year.  It's a National Blue Ribbon School.  It's Middle States Accredited.  All of the teachers are state accredited and participate in Act 48, which requires that teachers get additional education every few years to keep up-to-date with the latest teaching methods.  In addition to that, this school is in an ideal location for both of us to get him there easily.  Lots of plusses, right?

Well, there's one big problem.  It's a Catholic school.  None of this little boys parents are down with JC, let alone the Catholic Church.  In fact, I would definitely say that we're at the opposite end of the spectrum on most issues - take assisted reproduction, premarital sex, contraception, stem cells, and homosexual marriage as just a few.  The school doesn't seem to stress religion as much as living a Christian life, but I wonder about the reality of that situation.  I wonder if he's would feel like the odd one out, especially when the other kids are having their first Communion or Confirmation.  I also wonder how much we're going to have to re-teach at home.  Not that I think it's a bad thing to (gasp!) actually have to teach your kids yourself, I just worry about the "But my teacher said..." factor.  And I don't think it would be a bad thing if LM were to end up believing in some higher power, I just don't want that to be a result of our decision to give him a Catholic education.  I think that theological exploration is an important part of figuring out who you are, but I don't think that elementary school is the right place or age for that kind of contemplation and I don't want his religious decisions to be the result of being programmed as a child.  That being said, I also see it as a great opportunity to teach him to be a skeptical consumer of education, to learn that not everything that we're taught in the classroom is fact and that examining that information and deciding what we find to be truth is an important part of the learning process.

To make this decision even more difficult, when we started looking at Montessori schools, one of the big attractions was that he could start attending in the fall for pre-K and not have to change schools again until after elementary school.  Now our little guy has had quite a few school changes in the last couple years.  He's gone to two different schools and then no school during the time he's with BF and I and from his mom's house he's stayed home with family, gone to one school in the city, another in the 'burbs, which he's grown really attached to, and now he's scheduled to start at a different school downtown, closer to where his mom works, when the school he's in now lets out for the summer.  He's resistant to the idea of leaving the school he's in now, but that's an inevitability - it's over priced and too far away from any of his parents while he's there.  He only has one friend that he speaks of there and one of the places that he could use some help advancing (as is true with so many intelligent little people) is in his ability to socialize with children his own age.  I'm hoping that once he's settled in with one group of kids that he can stick with, he'll be more apt to make some friends. 

So the issues between the two schools, as I see them, are that the first offers an excellent academic curriculum, but doesn't have a preschool or a summer program, and that it offers a religious education.  The second offers an alternative education and curriculum that centers on the child's interests and learning through various styles, he'll be with the same group of people from September through the end of sixth grade, including the summer, but the technology, facilities, and teaching equipment were old and unimpressive and they don't have the highly credentialed academic program that the other does and that we feel LM deserves.

So please feel free to weigh in as to what you would do here or what you think about our little conundrum.  Goodness knows, we don't know what to do yet.  I'll keep you updated as to what we're going to do or any other options that arise.

Oh and regarding the house, which I promised to get back to, I'll explain, but not today.  Suffice to say, we may be moving back in as soon as we can.  Fun stuff!

5.27.2009

Onco Update

Ahhh...I had a nice long visit with my oncologist today.  I really like her; she's not just there to talk about the procedure and then get me out of there.  We bullshit about our kids, lives, the conflict between reproductive medicine and the Catholic Church.  It makes it less of a pain in the ass to make the forty minute drive and try to find parking downtown when I know I at least have some pleasing conversation to go along with the talk of chemotherapy and isolation.

We got everything lined up and tentatively scheduled for me to be admitted the Monday after July 4th weekend.  I'll be in the hospital for three days then discharged to quasi-isolation at my mom's house.  Day ten post-chemo, I'll start having daily blood tests and within a few days my blood counts will be back up high enough to do the pheresis.  Then, I get better for a little more than a month.  She said that there should be a month there that I'll feel pretty good and I won't have to be on strict isolation, I just have to be cautious and wear a mask in risky situations.

Then in late August I'll go in for the transplant.  It's what I thought the timeline was going to look like, but it's good to have confirmation of that.

I took my last dose of progesterone yesterday, so theoretically, my body should be ready to start with the ovarian stimulation, I just have to wait to start until I get my (fake) period.  And then, well then I get to stop talking and start actually doing something.  The hormones are already driving me crazy and I'm not really looking forward to what I'm going to be like going forward.  I ordered some hair stuff off of an infomercial (totally out of character) and BF told me I was being silly because I won't have hair in a month.  I burst in to tears and ran and jumped under the covers.  This afternoon I was driving downtown listening to my iPod.  The acoustic version of Foo Fighters "Everlong" came on, followed by "My Hero" - before I knew it I was weeping uncontrollably.  This is only going to get worse.  I pity BF.

5.14.2009

The Divine Getaway and My Big Mouth

Well, the weekend was fabulous.  BF got a great deal from TravelZoo and we got an incredible room for a steal.  The hotel itself was absolutely gorgeous.  It's a historic site that was accurately redone in 2007 to show of its Victorian roots.  The bottom floor was breathtaking, with sitting areas inside, porches with rocking chairs and lounges around the exteriors, walls full of old pictures, displays of old guest logs including President James Buchanan, who made Bedford Springs his summer White House.  There were two pools; an outdoor pool with little cabanas and an indoor pool filled with water from the seven mineral springs on the property.  The spa also uses the mineral spring water in their hot tub and cold plunge.

The room itself was beautiful.  It had a great big king size bed with a feather bed, down comforter, and down pillows.  It was like sleeping on a cloud.  The room had two french doors that opened up to a porch that had two rocking chairs and a little table.  The porch was shared with five or six other rooms and looked out over their beautiful lawn and gardens.  

Saturday morning I awoke in the cloud of a bed to fresh orange juice and coffee that was left at our door (gratis!).  It was quite the pick-me-up and we were out the door to breakfast in no time.  The free breakfast buffet included made-to-order omelettes, scrambled eggs, bacon, ham hocks, sausage, french toast, oatmeal, pastries, cereal, fresh fruit, and a selection of chesses.  It was awesome.  I had toast with blackberry preserves, bacon, cantaloupe, and a spinach, mushroom and cheddar cheese omelette.  It was a great start to our day.

When we were planning our trip, we thought that Fallingwater, the Frank Lloyd Wright house in Western Pennsylvania, was about forty minutes from our hotel.  It turned out to be a bit more than twice that, but it was a beautiful day and I love driving around when it's just BF and I (not that I ever get to drive; he a control freak).  So we got to Fallingwater in time for the 12:00 tour and really enjoyed it.  The pictures that are on the website don't even do it justice.  The views of the waterfalls running under the house from the terraces are spectacular.  If you have the opportunity, I highly recommend the tour.  Of course the house was built in the 1930's as a private residence, so it's not very handicapped accessible.  We scaled several sets of stairs in our climb around what is essentially a four-story house.  Luckily they had a van to take guests back to the visitor's center if you couldn't make the walk back, which I couldn't.  

After our equally enjoyable drive back to the resort, we went to a program called "Cooking with the Chef" which we, especially BF who is very into cooking, were really looking forward to.  It wasn't quite what we expected though.  We thought be actually be cooking with the chef.  Silly us, apparently.  The chef selected one person from our group to serve as sous chef while the rest of us drank champagne and watched.  They made sea scallops in a brandy sauce finished with butter, tuna tartar on a crouton, and jumbo lump crab cakes, that were literally falling apart there was so much crab in them,  with a miso vinaigrette dressing.  The perks of getting such a nice, free lunch of seafood and champagne almost made up for the fact that we didn't get to cook anything, but BF was definitely still disappointed.  

After lunch we laid around the room for about an hour before my facial.  When you schedule, the spa asks you to come up to an hour before your treatment so that you can take advantage of their hot mineral baths, a very sweet perk.  Our room was directly above the spa, so I took the elevator down, checked in, and was escorted into the ladies half of the spa.  There I was given a robe and flip flops and instructed on how to use the baths and steam and that there were showers and toiletries there for my convenience.  I changed into my bathing suit, had a nice shower with their signature walnut apricot body scrub, enjoyed the steam room, then a dip in the hot mineral bath, followed by a quick plunge into the cold mineral bath, and when I say cold, you have to remember that I'd just come out of a soak in a hot tub at about 102 degrees.  The water was paralyzingly cold.  My first instinct was to get the hell out, but I figured I'd try it and totally submerged myself for a few seconds.  

After the hot-cold-hot-cold, I decided that I was done with the baths, put on my robe, grabbed my book, and went into the relaxation room to wait for the aesthetician.  I'm reading "Eat, Pray, Love" a book that my mom's been trying to get me to read for a while and that I'm really liking.  I'm in the part of the book where the main character/author was studying at an ashram in India, and it was the perfect pre-facial reading material.  

The facial itself was fabulous.  Not knowing what would be right for my skin, I left it up to the aesthetician.  She used rose oils because my skin is apparently dry and sensitive.  After the 50-minute treatment, I felt as if my feet were no longer firmly attached to the ground.  I floated back to the room where BF was waiting to tell me how fabulous I looked and smelled.  

Then we had a late dinner in the tavern at the resort.  Good food, good conversation.  Mostly.  There should be a rule about talking about your real-life while on vacation.  Real-life dilemmas can really screw up a beautiful evening.  BF and I got to talking about whether we might just move back in to the house that he and his wife still technically own (as the person who moved in and was supposed to take over their mortgage hasn't been able to get a mortgage and is essentially renting the property without a lease).  I said that I was alright with that, but that I was uncomfortable with my position legally, that I didn't feel comfortable living in and contributing to building a home in a house that would be entirely his, to which I would have to claim should we split up.  He doesn't see why that would make me uncomfortable about my position, but he also doesn't understand why I want to get married.  I often feel like my standing in our life is defined by my health, like he's waiting to see if this transplant works before he makes any definite commitment to me.  That adds even more anxiety to my current situation because I feel that not only does my future health rest upon this procedure succeeding, but so does my relationship.  He says he just can't go on doing everything, by himself, forever.  He's a bit of a drama queen with that stuff, because he doesn't do everything by himself, I do help, just not consistently, but if he were a single guy with a son part-time, he would have just about as much to do and he would be responsible for every last bit of it.  Money also factors into it.  He also makes about seven times the salary the I make in a year, so as far as making a mortgage payment, yeah, he's the one paying.  This, as a reason for me not being a "full partner", drives me crazy, especially since when I met him, before we were dating, when we were only friends, I let him know that my greatest ambition in life was to be a mom and that I wanted to stay home with my kids and raise them as my primary occupation.  So I brought up a slew of issues from "I want a cut" to "how well am I actually going to have to be before you accept it and can be happy with our relationship". 

Not the best conversation for a date let alone a romantic getaway. He ended the coversation rather abruptly and said he needed to get out of the restaurant.  We walked back to our room in silence, stopping a couple times along the way to look at the pictures and displays of the hotel's history.  By the time we got back to the room, it was after ten and we had to be up early the next day.  We got into some comfy clothes, read a bit, watched some TV, and went to sleep.  

I slept terribly that night.  I was tossing and turning and at one point I actually woke up choking, I had either inhaled saliva or stomach acid, but either way it was pretty awful.  

The next morning we woke up to the same orange juice and coffee and had another nice breakfast down at the buffet.  Then we parted ways, I had a massage and he went to pack our bags.  I didn't do the whole bath thing again before my massage, but after a nice long massage, with a masseur that was very good about being aware of my fibromyalgia, I took a nice hot shower using all of the spa's fabulous soaps and such.  Then I went back to the room, where BF had everything ready to go, and we left.  

We had planned on doing something along the way on the drive home, but I was in pretty bad pain after all of the walking at Fallingwater and the rough sleep the night before, so we just came home.  As soon as we got home I laid down and napped for about two hours.  While I was napping he went to pick up the little guy.  LM was so sweet when he came home, we snuggled for almost an hour before it was time for him to go to bed.  I love it when he comes home, it just feels like somethings missing when we don't have him here.

So I've been trying to feel better over the last couple days, I've been pretty stiff.  The LM was sick yesterday, so I spent a lot of my day tending to him, some kind of stomach bug or something.  Today, I imploded.  I was walking like a little old lady, so I spent most of my time laying on the couch.  Hopefully, tomorrow will be better for it.

I'm still bummed about our fight Saturday night.  I hate when nothing gets resolved or even understood better.  It's just a frustrating situation.  I want him to say that he loves me and that he wants to spend the rest of his life with me no matter what.  I want to feel like if I stay sick, or if I get better then worse, that I don't have to worry about losing him.  I want him to be one of those partners who stays with their sick spouse no matter what, I want that "in sickness and in health" and I don't know how to resolve within myself that he's not going to give that to me, not now at least.  It's depressing in the one place in my life that I expect to be the anthesis of depressing.  I wish I could just say "well fuck him" if that's what it comes to, but I know that I'll be crushed.  On the other hand, I don't know that he'd ever actually leave me, he might just resent me more.  And I really wish I was strong enough to not put up with being resented over being chronically ill, but it would take a lot to get me to that point.  I love him too damn much.  I guess that's why it hurts so much.

5.08.2009

Mini Break

I'm writing from the car. We've been on the road for about two hours now, not counting a quick stop to sit down and have a bite to eat. We're on our way to Bedford Springs Resort & Spa out in central Pennsylvania. I love spur of the moment trips.

My mom had suggested that we go to Jamaica for five days with her and my brother at the end of the month, but I'll either be on fertility drugs or having an egg retrieval that week, so it didn't seem like a great idea. Bf still wanted to do something fun before the hell begins though and his ex wife wanted to keep the little man for an extra day this weekend so that they could take a little trip. Unfortunately, their trip fell through due to her boyfriend's uncoopperative ex wife, but she's still keeping the little guy so that we can keep our plans and she can have him for Mother's Day.

We had been considering going to Baltimore and the National Aquarium, but then BF found this place. He said he wanted to do something for me for Mother's Day that was less activity centric, more of a getaway. I love this man.

So we've got a spa suite for tonight and tomorrow night. Tomorrow we're going to tour Fallingwater, the Frank Lloyd Wright house out here. After that, I have a mineral bath and facial scheduled. Then Sunday morning, I have another mineral bath and a massage before we go home. We don't have anything else specifically planned, but I'm sure we'll check out the local scene, whatever scene there is, or maybe we'll just lounge about in the pools, hot tubs, and glorious nature.

Well I hope all you moms have a great day on Sunday and everyone else remember to remind your mom just how awesome she is!


Mobile Blogging from here.

5.02.2009

Need New Glasses

So I'm indecisive and I need some advice. As I'm not going to have any eyelashes or eyebrows post-chemo, I feel like my standard wire rim glasses aren't going to cut it, so I'm getting a new pair (or two - the prices can't be beat!) and I would love it if you would weigh in on the choices I've narrowed it down to.

Yeah, I know you don't get to see them on my face, but the shape of all three are pretty similar and all three look good, I just can't decide which one is the best and which color I want. So that's where you come in. Here they are, what do you think?


Pair #1 - look close, they're clear with red stripes throughout and only $8 a pair



Pair #2 - Comes in the four nifty colors below - $19 a pair



Pair #3 - Three cool colors and $8 each





What's in a Cure?

One day I post three times and then a week without anything. Nothing to post really. I'm in a holding pattern. Waiting to do this IVF crap. My body isn't on board with that one, so it looks like we're going to have to shoot me full of drugs just to get things started. The problem being that I was on Depo-Provera for so long that I stopped having a monthly cycle and it takes some time to get going again once you're off of the shot. So it looks like they're going to have to give me another drug, called Prometrium, to give me a "fake period" (no ovulation involved) to basically get me back to Day 1 of a normal cycle and then we can start the follicle stimulating hormones.

My pulmonologist is onboard with the transplant. She agreed with my conclusion that with both my pulmonary pressures down and my diffusing capacity down, i.e. my breathing is getting worse, but my hypertension is getting better, it must be the pulmonary fibrosis that is causing most of the problems here, so the scleroderma is the major factor. That just reinforces the idea that SCT is the best option for me. SCT can't fix the pulmonary hypertension, so if that was out of control, we could only hope to see minimal improvement with the transplant. Since the scleroderma seems to be the key culprit and the PAH is under control, then if the SCT does what it should and kicks the scleroderma's ass, I should be in much better shape.

Still don't know if my lungs are ever going to be better than they are now. I've spoken with doctors and people who've undergone chemo for scleroderma with pulmonary fibrosis and the verdict seems to be that they can stop the disease from getting worse, but fibrosis is a buildup of scar tissue and they can't get rid of that. The PAH is still a big question mark. I haven't found anyone who has had SCT for scleroderma with PAH, so there's really no way to know. Some cases of PAH are caused by things like Fen Phen, but when the person stops doing the drug, the disease doesn't stop advancing. Other types of PAH are secondary to things like tumors or clotting disorders and when the underlying diseases are cured, the PAH goes away. So the question is, how will scleroderma react? Up until now SCT there wasn't anything out there that could "cure" scleroderma. High dose chemo might put it into remission, but not forever. So now I've got a brand new, experimental treatment, but even if this does cure the scleroderma, I don't really know what life's going to be like after that cure.

And that's just the medical side of things. I really don't know what life as a whole is going to be like post-transplant. I've never been well as an adult. I've never had the opportunity to work without waking up every morning and taking stock of my symptoms. I've never been able to make plans for next week or next month (or sometimes even tomorrow) without hesitation. I can't wait to get on a bike again, to run without worrying that I won't walk for a week, to get down on the floor and play with the little man without thinking about how I'm going to make it back up.

It's going to be like learning to live again. It's exciting, but it's also really scary. I'm hoping that I'll psychologically be able to jump back into life, that I won't hesitate. I'm really hoping to regain my social life and actually have some friends again. The big one that is hanging over my head is having a real job for essentially the first time. But when that really worries me I just think back to November of 2005. I was sick, my best friend had died of a drug overdose two months before, I was knee deep in end-of-the-semester insanity, carrying a full course load of five classes, I was working almost forty hours a week, and my only real coworker in the administrative end of the business, my boss, had just been fired without a replacement. I thought I was going to break down, failing the business and school while destroying my health. Instead I excelled. I got straight A's, all of the orders went out, and with the exception of a couple level 10 migraine headaches (I missed out on both Thanksgiving and Christmas Eve that year), my health remained pretty stable and I made it in to work regularly.

I don't know why I eternally doubt myself so much. Under pressure, when it really comes down to it, I always expect to fail and I usually come out on top. I'm a worrier I guess. Having so little control over my body also feeds that one. When I took my capstone class at Temple, we had to spend the semester writing a thesis paper on post-WWII Europe. A lot of the class was going back and forth to see the professor and discuss our ideas and spending time in the library doing research. I was just too sick to make it downtown much that semester. I missed half of my meetings and got so far behind that though I managed to crank out thirty pages on the collapse of communism in the Eastern Bloc, they were pretty much crap and combined with the percentage of the grade that came from just being there when you were supposed to, I managed to get a D- and it cost me my double major. So I'm hoping that when my body isn't such a big factor in the equation and I can rely solely on my intelligence and will power to get me through I can once again have some faith in my ability to make what I want happen.

So much for having nothing to post, right? You should see me in real life. It’s easy to understand when BF forgets I even said most of what I say. I can talk about nothing for hours.

4.27.2009

Bitch Bitch Bitch

Last night, BF and I were fighting and I just needed to get out of here. I got my shit together, went outside, and then I sat in the car for a half hour and just cried into the steering wheel; I didn't have enough gas to go anywhere.

I've been a royal mess. I've been crying at everything. I've been irritable, weepy, and just sad. I'm hoping that I'm premenstrual. If not I'm just an insane bitch.

It's not as if I have nothing to be upset about. All of this stem cell crap is really freaking heavy. BF doesn't get it. He says that I'm getting what I wanted and I should be happy and excited that it's happening. He says I'm just wasting time be being upset or worrying about the outcome. He just doesn't get it and apparently nothing I can say is going to make him get it.

It's isolating and incredibly frustrating. I feel like I have all these people around me, but I'm all alone with the reality of all of this.

I just hope I get my damn period this week. Then I can go from PMS to artificially injecting myself with fertility drugs that will do god-knows-what to my mood.

Ugh. I just want to get this crap started already so that I don't have to think about it and be scared/anxious/excited/nervous all of the time. I won't have to feel guilty about not going out or doing the laundry or any of the myriad other things that BF wants me to do now and then gets frustrated with me when I can't. I'll look sick. For some reason, whether they know that you're sick or not, people are reluctant to give you permission to be sick unless you look it. You don't get freedom from the eye rolling and sighs that imply that you really could be doing whatever it is they want you to do, but you just won't. Well, after the chemo there will be no denying that I look sick. Maybe then I can get a break from feeling like a massive disappointment.

4.24.2009

Chemo Blog

So I've started a new blog for the impending transplant. The point of it is to have a private place to be able to easily spread info among all of my friends and family, stuff that I might not want to be broadcasting to the whole world, like hospital room numbers, dates, blood counts, etc.

I will still be posting her regularly, it's just that there are some things I don't want the world to know, and I find the blog format the easiest for disseminating that kind of information rather than making/taking a million calls/emails. I'm sure you all understand.

So, of course, I'd like to extend an invitation to those of you who read here if you want to follow that kind of stuff. Just shoot me an email, if I don't already know who you are let me know, that kind of thing. It is on the personal side, so if you don't regularly follow my blog or know me in real life, please don't be offended if I don't invite you to read.

Coping

I'm part of an email support group for scleroderma patients and their families in the Southeastern PA area.

I had some trouble with the question for this week and when I finally was able to answer this evening, it just felt like it belonged here.

This week's question was - What helps you cope with scleroderma?


I've been thinking about this one since C. posted it. My first instinct was "Not very well." Honestly, this disease has taken over my life. I'm still a very young woman. I just finished college. I was planning on starting a career and a family. I had an active social life. Now, I have no social life besides my family. I have no job. I have such bad joint pain, fatigue and shortness of breath that there are many days that I don't even get off of the couch. I may not ever have children or be able to start that career for which I studied so long and so hard.

Hope is how I'm coping right now. Hope that I might be close to a cure, hope that life might be normal, whatever that is, hope that I'll be able to have kids, hope that I can be a productive member of society again.

I write my blog. That helps. It gives me the freedom to let it all out.

My family...well, I feel like I have to cushion all of this for them. My disease is active and aggressive. They're always telling me how great I look and I hate having a negative answer to "how are you doing?" every time someone asks, so I lie.

[Ed. Note: Yep, some of the family reads this, but some things are easier to type than to say.]

But the best way for me to cope is to be as active and aggressive in fighting this disease as it is in destroying my body. Over the last year things have turned from bothersome and limiting to life-threatening and inhibiting. For a while I was depressed and defeated. Then I got angry, really pissed off. At the doctors who weren't doing enough, at life for sticking me with this disease, angry at my age, at my body.

Let me say that being angry is a great motivator. I decided to take my treatment into my own hands. I found doctors who were willing to be appropriately aggressive and now I'm able to fight with all I am, to work as much as possible to reverse this disease's hold on my life. So that's how I best cope, I fight. I'm having a stem cell transplant, I'm doing IVF to preserve my fertility, and I'm doing my best to stay aggressive.

If that fight fails, well I really don't know how I'll cope. Pulmonary hypertension is fatal and scleroderma has induced an aggressive form of interstitial fibrosis. If I lose this fight I won't be coping with living with a chronic disease, I'll be coping with dying of a terminal disease and that's not something I'm ready to think about yet.

4.20.2009

Conception

Let me just start off by saying that if you have any qualms about hearing the words "menstrual cycle" then you should probably just skip this post in its entirety.

That said, it's like a roller coaster over here.

Somehow in all of my neuroticism and insanity over the last few weeks, I managed to completely loose track of my cycle. Today is Day 23. Holy shit. That means that *if* I get my period this week, I'll start the IVF cycle immediately. Nervous excitement abounds! I'm going to have a blood test tomorrow or the next day to see if I ovulated this month, I just can't wait another five to ten days to see if it's going to happen. I don't have much patience for waiting for these kinds of things. I was the girl in high school that was on the pill, but still took a pregnancy test as soon as my period was a couple days late. I need to know!

I said I was neurotic, right? But we (BF and I) went in and had a consult with the nurse who explained the whole procedure and I'm full of nervous excitement. This is really going to happen!

So if I did ovulate, my next cycle should start between the 25th and 30th and then the two week circus begins. I’ll first start with Gonal-F (follicle stimulating hormone) from Day 1 until egg retrieval, which should be around Day 14. I'll also start with Lovenox on Day 1 to replace my Coumadin so that if we have to do emergency surgery for any reason I'll be okay and so that when they do the egg retrieval I can be taken off of the anticoagulants quickly. BF and I will both have to take a course of antibiotics for the first week just to make sure I don't have any infections and that he doesn't have one that he could pass to me. I'll start Cetrotide midway through the cycle to suppress natural ovulation. Throughout the entire cycle I will be getting regular (read: constant) blood work and transvaginal ultrasounds to monitor my hormone levels and the progression of my follicle growth. Once they have reached the ideal point where they're nearly ready, I'll give myself a shot of Lupron. This will give my eggs the final shot of hormones that they'll need to fully mature. Exactly thirty-five hours after the Lupron shot, I'll have the egg retrieval and whatever eggs they can collect will then be fertilized with BF's sperm. Not exactly the romantic way I'd imagined we'd conceived, but nothing else in this life has gone as expected, so I'm learning to just roll with it.

If I don't get my period this month, they will make me get my period next month with a drug called Prometrium. Once I have that fake period, my hormone levels will be at the right place to start a cycle and it will go along just like if I had menstruated normally.

So I'm very, very excited. I hadn't thought how far I was into this cycle before we went into this visit today and to realize that we're possibly this close is really exciting. Not only because of what we're doing, but because I'm actually doing something. And it was also very nice to find out that the protocol that they have me on consists entirely of drugs that are injected subcutaneously, so I can give myself all of them.

One another subject entirely, LM had his third birthday celebration (dinner and cake at my mom's) tonight and then got to sleep over at his pseudo-grandma's house. I'm glad that they like each other so much. I have a VQ scan scheduled for 8:30 am tomorrow morning and it's hard enough to get myself out of the house without him, so it's nice to be able to just pick him up when I'm done.

Alright, well the day has just caught up with me very suddenly and I've become slow and achy, so I'll sign off for tonight.

I hope the mood swings haven't been too insane and I hope you'll all hang on for the next few months’ worth!

4.18.2009

A Roll Call of Sorts

Okay, I know, four posts in one day is a bit much, but this one will be quick.

First, I see that I've got a few more readers coming by these days. Good stuff, but none of you are commenting. So, how about de-lurking for a purpose?

I'm trying to amass a reading list for my upcoming confinement. My profile should give you a general sense of my taste in books - not very literary, mostly sci-fi/fantasy/horror or just weird. I also like historical fiction and light non-fiction.

I'd love to hear whose visiting along with any book suggestions or any other suggestions on what I might want to take with me. So far I want to bring a sleep mask, dvd player, movies, iPod, notecards, some board games, video games, beading stuff...and that's about it. I'm going to be in-patient for a month and I want it to be as homey as possible, but I'm not sure what else to bring, so your suggestions are welcome.

And, of course, if you don't happen to have a suggestion, no sweat, but I still would like to know who you are and where you're from!

Alright, I'm looking forward to hearing from you all!

Happy Birthday My Sweet Little Man!

He is truly becoming a little man. He's getting taller. He's getting more personality. His ability to reason and make deductions based on what he already knows is astounding at times. Every day with him is interesting and fulfilling and challenging.

I had no idea what I was getting into when I moved in with BF and LM. LM was just starting to talk and walk. It was so easy. It was so different. Then, it was about keeping him occupied, feeding him, changing him and making sure he got enough sleep.

It's a whole new ballgame now and I really love it. He's got such excellent linguistic skills that it's really a joy to talk to him now, to actually have conversations. And he wants to learn things and teaching is pretty much my thing, so I'm really loving that. We had a whole mini-lesson the other day about who the men on our coins are and what they did and why they were important. I was thrilled and he really seemed to enjoy it.

I love him to death, but I like him more all the time. I'm so glad that he's a part of my life and that I'm lucky enough to be a part of his. Parenting is just so rewarding. I always knew that I wanted to be a mom, but I had no idea of what it would actually be like. And at this point I really do feel like a mom and just to boost my self-confidence in that area, LM told his mom that I'm one of his parents. He definitely favors his dad when he's here, but I've been noticing more and more that he really does treat me like a mom.

* * *


The birthday party turned out pretty well. We decided to do a combination party this year with LM's mom, so the little guy got to have a whole lot of his favorite people around, all at once. It's the first time we've ever all gotten together like that and it went really well. We rented space at Smith Memorial Playhouse, a very cool place. If you live in the Philadelphia area and have kids under ten, you need to check it out. It's free to play on the playground and they have the coolest, most unique playground equipment I've ever seen.

Getting there was absolutely insane though. It was a great zoo day in addition to a Phillies game, so traffic inched all of the way down I-76. All of us, hosts and guests, were late. His poor grandparents didn't get there until the party was practivcally over.

We had fun though. The train cake came out pretty well (and I was feeling well enough to frost and decorate it), but on the way down we had to stop a little too short and the train fell on it's side. We mostly salvaged it, so it wasn't a total loss.

LM enjoyed his gifts and we just got finished reading on of his new "Martha Speaks" books, which he loves. It was a really good day on the whole and it's good to have had this as a sort of ice breaker. It's the first time that both sides of LM's family have been in the same room and I hope it leads to more of these joint holidays/events. It was good for him and I think it's good for all of us too. I was particularly happy about how things went with LM's aunt. Things have been historically tense and unfriendly between the two of us, but today we both made an effort to put it behind us and not only co-exist, but actually be nice to one another. I'm hopeful that this can be the way things are from here on out. I like their family, the past has just strained relations. Maybe enough time has passed that they can see me for who I really am rather than how I came into their lives.

Anyway, it was a good day, exhausting, but good. I've been laying on the couch since we got home and I'll be going to sleep very soon. It's good to have an exhausting day every once in a while.

G'night all!