Finally.

All of last week I was waiting...and waiting...and waiting.  I had taken five days of medroxyprogesterone to try to induce a period so that we could start with the fertility drugs.  I took the last pill Tuesday.  Wednesday, no period.  Thursday, no period. Friday, no period.  

Saturday, BF and I were leaving for a trip to Hershey Park, which is about two hours from our home, with the little man, my dad, step-mom, their kids, and my brother.  We had booked our hotel and were going to take part in the park's preview plan; if you have tickets for one day, you can get in the park for free after 7:30 the night before.  We had packed our bags and were stopping for lunch before going to the mall for haircuts and the semi-weekly kid swap.  

As we split a milkshake I said to BF, "Okay.  As long as I don't get my period in the next eighteen hours we're just fine." The I went to the bathroom and...Well, I'm sure you can guess how that story ends.

The way the IVF cycle works, the first day that you have your period before 9 am is day one of the cycle.  Having gotten my period at 3:00 in the afternoon on Saturday, Sunday would have been day one.  I didn't want to mess up this cycle, but I also didn't want to skip Hershey, make the guys skip the preview night, or drive the two hours by myself on Sunday morning after driving an hour back and forth from the doctor's office in downtown Philadelphia. 

Luckily, my awesome IVF nurse had given me her cell phone number and had said to call anytime about anything at all, no matter how small.  This, I figured, more than warranted a call.  She agreed.  She also assured me that waiting until Monday morning to start the cycle wasn't going to ruin anything and that I should go to Hershey and enjoy myself and then get downtown first thing Monday for blood work and an ultrasound. 

So we went to Hershey and had a fabulous time.  I was afraid it would be difficult to keep all eleven of us together, but we managed to keep it together pretty well.  It helped that my step-mom had the baby to contend with and doesn't really like roller coasters or "thrill rides"; she kept an eye on the LM and her own six-year old son most of the time.  It also helped that Hershey is laid out exceptionally well and the lines were incredibly short.  There are eight or nine different areas, each with a big ride or two, a few kiddie rides, and a couple rides that everyone could go on.  We were able to go to an area, split up for a little while so that we “big kids” could go on a roller coaster, my step-mom would take the little guys to ride on a ride they'd enjoy, and then we'd all get back together for a ride or two that we all liked.  

I also got one of those great little scooter-like ride on ECVs.  It was the best.  They have keys, so I could ride it up to the entrance of a ride and take the key with me so that I didn't have to worry about someone taking off with it.  And the lines were so short that I didn't feel like I was standing for too long, although there were still some long walks through queues and up stairs at the water slides.  I was pretty exhausted and achy at the end of the day, but the point is that I managed to get through a twelve-hour day that would have otherwise been impossible.  

Sunday night, we didn't get home until 12:30 and after two weeks of insomnia, I fell asleep minutes after my head hit the pillow, despite being sunburned and unable to lie on my side as I usually do.  Monday morning, LM and I were up and out of the house at 7:30 and got down to UPenn about an hour later.  He was a real trooper and reminded me all morning of exactly why I want another little person running around the house.  He snuggled with me in the waiting room, asked dozens of questions about why we were there, told me about how he was going to help when we have a baby, and how he would like to work at the doctor's office and, the best, told me how much he loves me “a hundred million billion” and will be my friend forever, over and over again.  We had to wait to have an ultrasound and then wait again for blood work and it was 10:30 by the time we got back to the car to leave.  He was sound asleep in the backseat about five minutes into the trip home and slept for more than three hours that afternoon.  Shortly after he got up from his nap, I got a call from my nurse with the good news that I could go ahead and start with 150 I.U. of Gonal-F every day through Wednesday and come back in on Thursday morning for a second blood draw.  She also let me know that I have seventeen antral follicles (which I have since learned bodes very well for the success of the egg retrieval) and that my estradiol and luteinizing hormone levels are 77 and 4.5, respectively (which still means nothing to me).

The first injection was easy.  I don't mind needles and this one is tiny and just a subcutaneous injection.  It's also a cool pre-loaded pen; I just attach a new needle, dial in the right dose, pop the plunger up, stab my belly, and press the plunger all the way in.  Very cool.  This morning, however, I woke up to this fabulous little gem:

I don't have room for two weeks full of bruises that size on my lower belly.  Also, later this week I'll be adding injections of Cetrotide daily and possibly Pergonal. Can you imagine how purple I'm going to be? How many different shades of bruise I'll be representing? I'm hoping that injection #2, which I gave my self this evening, won't prompt such an extreme reaction. On the whole I'm thrilled to be started. I'm not feeling any bad hormonal side effects yet and I'm just happy that we're able to do this and that I'm finally moving forward with the treatment.  The purple…Well, I don’t like it, but it makes my stomach match my heavily-bruised appendages and it certainly won’t kill me.

Well, I'm off to bed. BF is getting antsy.  I'll let everyone know how things are going as they progress and I'm working on a post about the schools that we're looking at for LM.  So think about this one for me - but don't answer until you hear the whole story: what do you think about the child of strictly secularly thinking people attending a parochial school? 

Huzzah!

They didn't total my car! In fact, it's in the shop right now being put back together.

It was so nice to get the call yesterday. And now I have a nice rental car, so I'm not trapped; I can go out during the day and do whatever I want. And I'll have my own car back soon (hopefully).

BF and I had a nice little date last night. Dinner was okay, but the restaurant had let a group of seventy-five women take over the dining room. They were making announcements, giving away prizes, applauding at everything; it put a real damper on our meal (which was otherwise pretty yummy. We complained to the manager about our problem with the large, loud group, and she comped our meal. After dinner, we went to see Iron Man 2, which I thought was pretty good for an action hero movie. It didn't let out until close to midnight, so we just went home and went to bed.

Today, I'm hoping for the energy to get my vegetable plants planted in the garden. It's a nice sunshine-y day and I would really love to be able to get out there and do some work. We have lots of sprouts that need to go into the ground: peas, beans, carrots, cucumbers, tomatoes, and hot and bell peppers. I know there are more, I'm just cant remember them.

The best news of the week: BF and I are going to Madison Square Garden to see Pearl Jam. I'm very excited, it's gonna be a blast. This will be the third time I've seen them live and I love the concerts.

Alright, that's enough for now. I'll write again soon.

My Poor Car

Yesterday evening, at ten o'clock, a middle-aged Vietnamese man drove his silver Sienna mini-van into the rear driver's side of my Jetta, crushing a good portion of the rear of my car and completely destroying the rear axle. I was no where near the car at the time of the accident. I was sitting on my couch watching TV and my car was parked, perfectly legally, on the street. We only found out that the car had be hit when we were greeted by a police officer at our door.

I'm pissed...and sad. I loved that car. It was my first real substantial adult purchase. I spent five years paying the damned thing off, and now, almost a year to the day after I've paid it off, this happens. So now they'll say it's totaled, write me a check for somewhere around five thousand dollars, and send me on my way, and I will have to go through the pain in the ass of buying a new used-car for less than half of what I spent for my Jetta. I felt like I had the car thing covered, at least for the foreseeable future. It was nine years old, but it was still in good shape.

So until I find out what the insurance companies have to say about the matter, I'm stuck playing a waiting game. And until this guy accepts liability for the accident, I don't even have a rental to drive because, yes, I am that cheap and wouldn't pay the eight dollars a month to have one covered under my own policy and I have to wait for his insurance carrier.

This Sucks.

Lonesome

When I was a teenager I was surrounded by friends. They were mostly of the outcast, drinking, and smoking variety, ungrounded, no jobs or big ambitions. Thats not to say that a few of us went on to bigger and better things, but some of them barely made it out of high school. So there are a couple of things that started to distance us. The first was the death of my best friend Colin. Sitting around, smoking pot, talking about bullshit just started feeling empty with out him there; it felt wrong somehow. Then there was college. My free time disappeared. I hardly had anytime with my BF and the little man, let alone time to just veg out, smoke pot, and watch tv. And after college, well after college I got sick as hell. The PAH was diagnosed, my lung capacity crashed. That year I wasn't up to reconnecting with anyone, and then the next year we had this whole six month hospitalization hell.

So now here I am. Things are starting to look up. Despite the chemo fatigue, I'm driving again, I'm going out, I'm even gardening. But I'm lonely. I have my BF, and he's pretty much my everything. He's been gone since yesterday morning, off to Milwaukee to by a new motorcycle (one I can ride on this time!) and without him here it occurs to me that I've go nothing to do. I'm still in touch with a couple of girls, just by phone and email, i miss 'em. It's just hard to try to reestablish relationships knowing that I may have to reschedule six times, or just cancel all together or get sick in the middle of being out and having to cut out early.

It never occurred to me when I was well that any of this could happen. That I'd get sick. That I'd lose my friends. That I'd become so dependent. This doesn't feel like me anymore.

Spring!

This was, as usual, a pretty nasty winter in Philadelphia. Wind chills that make you feel like your face is going to tear off, a couple feet of snow that just didn't want to melt, like I said, typical. But it is Spring At Last! It's sunny and green and just so encouraging. I've been sprouting vegetable seeds for by garden. Bf built the garden for me this week. We're doing a raised garden so that Bf doesn't have to dig up all that space for a garden that's really my thing, not his. He's always available to help me out when I need him to, but I do try to make things simple and less back-breaking-labor intense, if I can. In a couple weeks I'll get to plant my seedlings. I'm growing peas, lima beans, green beans, broccoli, spinach, shallots, peppers, and cucumbers. It's my first attempt at having a vegetable garden in like fifteen years, but my dad and I did pretty well back then.

We're also finishing up the renovation of our house and unpacking all of the boxes that've been hanging around waiting for the renovation to be finished. Yesterday, we went and picked up the rug we'd picked out for the living room. It's cool. It's an oval with lines on it, kinda like a watermelon, but in shades of brown instead of green. And any day now we get our new sofa and love seat in Ivy (which they don't have a picture of). I'm so excited; this is the first time BF and I have bought real, good quality furniture. Not that the IKEA stuff is bad quality, it just always ends up falling short of our expectations.

As far as my health goes...well...it's a mixed bag. I've been getting chemo once a month, which leaves me really exhausted for the next week or so, but the third and fourth weeks of the month I feel pretty great. The big problem for me right now is my G tube. It keeps getting infected and that hurts like hell. It's really just a giant pain in the ass; I don't know how I'm supposed to live with this thing. If I drink too much it comes out of the hole, same with food, smelling like vomit. So I'm always cleaning it, changing the dressing, changing my shirt; it's ridiculous and I hate it.

In other, better news, we just had the little man's fifth birthday party! He's getting so big, it'ss scary how fast he's gone from being a baby to really being a little boy. We shop for clothes now that are fitted neither for a certain number of months or for toddlers. He starts kindergarten in September. He's learning like a sponge. He reads words, adds and subtracts, it's just wild to be a part of. I also found out that I went to high school with his teacher, which was an odd but good revelation; I always liked her, she was a really good person then and it doesn't seem like anything's changed.

Alright, that's all for now. I'll check back in soon.

I Keep Forgetting!

I keep forgetting to mention that I''ve started a charity!

It's called Knit for the Needy and it's a group of people using loom knitting, or whatever other knit-craft they enjoy, to create hats for the homeless in the Philadelphia area. This way people can give their free-time, time on the train, little bits of stolen time here and there, and work from they're home , office, or wherever else they please.

I don't have many volunteers yet, but I'm hoping to get plenty between now and the Fall, so that we can have plenty of hats by the time next winter rolls around.

The charity website is www.knitfortheneedy.org and I'd love to see anyone who's interested check it out and perhaps volunteer themselves. Loom knitting hats is a very easy process that usually takes between five and six hours per hat, so you can really see the results of your work immediately!

I know, I Know...

I know. I said that there was another post coming, like soon, after that last purge of an entry. Things have just been, well I guess very productive and a little exciting, but mostly boring.

After I left the hospital I went to my most-excellent-Mother’s house to rehab, and there was plenty of rehab. I couldn’t walk or stand. My legs were like Jell-o. But with the help of my physical therapist and my own strength-of-will I got up and walking with a walker in about a month. By the middle of February I had already been walking around without the walker for a while. At the same time we were still controlling (and are still controlling) my GI issues. I have to suction my stomach through a gastronomy tube that goes through my abdomen and at night I get feedings through a jejunal tube that bypasses my stomach and feeds me directly into my small intestine. Lovely, eh?

Anyway, by the end of February I felt well enough to get out. In fact I felt that it was imperative that I leave the state and do something fun. After all, after six months in the hospital “cabin fever” doesn’t ever begin to describe it. So we booked two tickets to Vegas and flew out there. The trouble is, we’re not really the “Vegas types”; we don’t really gamble, go to dance clubs, drink, or pay highly inflated rates to fly over the Grand Canyon or the Strip, but we still thought that there’d beplenty to keep us busy. And there was a lot, just not enough. We had a great dinner at a nice restaurant, saw two Circue du Solieil shows. But we ended up taking a five hour drive to the Grand Canyon only to find that there was a very localized snowstorm that had whited out all of the “scenic vistas” we’d been waiting so long to see. And other than that and a couple little side trips, we spent a lot of time sitting in our hotel room watching Olympic curling and fighting over whether or not it was my fault the vacation was going so badly. But, great vacation or not, we got away and it actually did wonders for our relationship. It was really hard for BF to deal with me being hospitalized for six months and essentially being hospitalized for another two months at my Mother’s house.

Once we got home from Vegas and I moved back home with BF, things got a lot better between us. I’ve been able to do a lot more to help around the house, and BF is more understanding about the things that I can’t do. And not to get too intimate, but things have been a lot better in that department as well.

So now we’re just living life as best we can. The house is still not-quite-renovated, the laundry never ends, and half the boxes are still packed from the move, but we’ve got our own house, I’m building a vegetable garden in the side yard, BF’s building a deck in the back, the little guy’s about to turn five and he’s getting a great big play set with swings and a slide for the back yard. Things are good. We’re happy. I’m doing a round of chemo a month; I’ve had three so far and they’re not so bad. Oh and before I forget, my step-mom’s pregnant again, so I’ll be getting a new baby brother in six months. It’s pretty exciting.

Well, I guess that’s it for now. I’ll write again. Can’t promise when, but hopefully soon! Thanks for bothering to read!

My Return to Real Life

Sorry it's been so long. Things just got so depressing that I couldn't stand writing another post that said "So, I'm still in the hospital...", so I just decided not to say anything.

Real quick, here's the rundown of the last seven months. I went to the ER with abdominal pain, fever, and unexplained shortness of breath on June 19th. I was admitted to The Hospital of the University of Pennsylvania where my aspiration pneumonia continued to worsen for another two weeks before my lungs failed and I was intubated. I was intubated for a month while the doctors tried to keep me on this side of deaths door. I had acute respiratory distress syndrome and then as that was clearing up I developed adrenal insufficiency syndrome, which was another difficult fight. After I was transferred out of the ICU, I developed methhemoglobinemia as a side effect of one of the drugs I was on and it kept me there even longer.

I was transferred to a phical rehab because I had muscle wasting and neuropathy in my lower limbs. For two weeks I worked hard to get walking again, but then had another episode of aspiration pneumonia that landed me in Einstein's ICU for two weeks and then I was moved to the ICU at Thomas Jefferson University. This was the beginning of October. I spent October and November getting new aspiration pneumonias and recovering from them. In December they finally decided to do something more permanent to make me better. They surgically placed a combination G/J tube into my stomach and jejunum. The G tube drains all of the acid and food out of my stomach so that I can't aspirate and the J tube delivers daily tube feedings lower down into my digestive tract so that I still get the nutrition I need. After recovering from the surgery for a few weeks I actually got to come home. December 18, I was released and came home to my mom's house. I've been working hard with a physical therapist that comes to the house two times a week and now I'm walking with a walker and can even climb the steps now, though it still wears me out pretty badly.

While recovering I started loom knitting hats and I've turned my interest in it into a charity, knitting hats for the homeless. You should check it out.

Knit for the Needy

Well that's life right now, hopefully I won't have to tell that story again anytime soon. I'll write again soon, I've got plenty to say, but for now I'm going to be off.

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.

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 4^th, 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!