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!

Mood Swing!!!

We just got four tickets to see Eddie Vedder live at the Tower Theater in Philadelphia on June 12th!

I am freaking giddy!

My dad got me into Pearl Jam when I was like ten years old. They've been a favorite of his since their first album, but he's never been to see them and has always wanted to. I distinctly remember, about 15 years ago, him describing a dream about being at a PJ concert and having Eddie pull him up on stage.

They're also BF and my favorites. He's seen them eight or nine times and I saw them for the first (and second) time last summer.

It's going to be so awesome to see EV solo and really awesome to be able to take my dad!

Yay!!

Also, the migraine (all but) went away - so the day has taken a major turn for the better.

Bullshit!

Four hours from now we're having a 4th birthday party for the little man.

One hour ago I woke up with a head splitting migraine.

Took -triptan nasal spray. Waited.

The migraine hasn't gone away, but instead simply relocated to the opposite hemisphere of my head.

In half an hour BF wakes up. Not only is he going to be frustrated that I have a migraine, but he's expecting me to frost a birthday cake-bullet train (per the lm's request).

It's not happening. He can figure it out for himself or he can draw a damn train on a sheet cake and watch as the kid is just as happy with a cake of the non-contoured variety.

Don't know what I'm going to do about this party. Being one big medical mistake while also trying to be a parent, even a part-time parent, is so fucking disappointing all-around.

I want to be there. LM wants me to be there. BF definitely wants me to be there. But on the same note, I don't want to spend the party on the floor of a public restroom vomiting and wishing that I could just pass out already, which is precisely what a sunny day, movement, children, a playground, and a migraine turns into.

This is bullshit. I'm sick of it. I really wish I could just put all socializing on hold until after the transplant. There's a line from the movie "The Beach" that has been replaying itself over and over in my head for the last few days. Leonardo DiCaprio's character says something (which for some reason google is being zero assistance in finding the exact wording to) about how

When you're the victim of a shark attack the important thing is to get sick and die or get better. It's the hanging around that really pisses people off

It really does piss people off.

Hell, it pisses me off.

::Sniff::

So I had my right heart cath last week. My pulmonary arterial pressure has decreased "significantly." I'm not really sure what that means yet because I have the results from this one, but I don't have the results from the previous one. I see the pulmonologist again next Thursday, so I'll have more information then.

I'm just having lots and lots of tests right now. I had a pre-BMT dental evaluation today, just to make sure that my gums and teeth aren't harboring any bacteria that could come out later on. I also have to have a mammogram, a pelvic exam, a CT of my chest, abdomen and pelvis, and a MUGA scan to evaluate my left ventricular function. That's all in addition to the thirty or so different blood tests that I had done today.

There's not enough to do though. I never thought I'd say that, but I wish that I had far less free time. It's really starting to hit home that this is happening. I've been tearing up left and right. It sucks. We were out tonight picking up a book for my upcoming college algebra CLEP exam and we stopped in DSW to look at some boots for BF - he just got a motorcycle and apparently there is a lot of other crap that you need to buy to wear while riding them. Who knew? So while we were there I made my way over to the sea of sandals. I found a really cute pair of leather sandals and BF came over and picked out a couple more pairs for me to try on (he likes to pick out my clothes and he's pretty damn good at it). Two pairs in, I had to stop him and tell him it was time to go. I really wanted to cry and I felt ridiculous looking at sandals. I'm not going to have any reason to buy a new pair of sandals this summer, let alone a pair of designer sandals (no matter how good the sale).

It's not just little things getting to me. The really big ones are hitting home too. Death. Massive systemic infection. Months of isolation. Chicken pox.

It seems to be harder now that it's gorgeous out. Spring has finally sprung in Philadelphia and I love it. And that makes me more sad. I've started thinking about all of the things that I want to do now that it's warm out, all of that great summer stuff like going to the zoo and down the shore, playing mini-golf, riding roller coasters and swimming in the pool that's just a few yards from my door. It's really hitting home that all of that's going to be off limits this year, that once I go in for that first round of chemo I'm going to be stuck sitting around the house until at least Christmas.

It's just sad. It'll be worth it (I hope) and I want to do it. I just can't help but be sad. And I hate getting all choked up like this. It accomplishes nothing. Worrying does nothing but waste time and crying is even worse. I just wish I didn't have so much time to waste with worry. I thought I was going to do the therapy thing, but I just don't feel like that helps with any of this. These aren't issues that I can work through mentally. The only thin that's going to make all of this okay is time. One day this will all just be over and I won't have to think about it, but for now I guess I just have to deal with this great big mess of emotions.

New Button

Just a quick note.

You might have noticed the "Donate" button on the right side of the page and said "Huh, I wonder what that's for."

I've reached out to Wish Upon a Hero to ask for financial assistance in coming up with the $5,ooo that we'll need to pay for the in vitro fertilization.

I don't want to pressure anyone to do anything, I know that most people's financial situations aren't much better than ours. But if people are directed here from Wish Upon a Hero, I thought that that would make it easier for them to make a donation if that's what they want to do.

Insomnia

I thought it might be appropriate to give you guys a link to the stem cell transplant procedure documents that were published by the SCOT clinical trial so that you'll have a more full understanding of the process. It's very well done with pictures and is probably more helpful than just reading here if you're interested in understanding the procedure.

So here it is: SCOT Trial Study Procedure

Just FYI, I'm not actually in the study and I won't be getting total body irradiation.

I have a right heart catheterization scheduled for 9 am tomorrow. Now some would ask "Rachel, why the hell are you still awake at six in the morning?!" The answer to that has several parts and sucks. BF and I decided to get new fancy slats from Ikea for our bed to make the comfort adjustable. He didn't realize how time consuming the assembly of the slats would be, so he started after we watched Lost (10pm) and didn't get finished until about 1:15 am. Shitty. So we went to bed, but I was sleeping in that half-asleep half-awake way that when you periodically wake up completely, you don't feel like you actually slept at all. Well, the last time I woke up was to a persistent cough that just wasn't right. As I continued coughing and woke up all the way I realized that I had rolled closer to BF in bed and off of the inflatable ramp that keeps my head elevated while I sleep. Because of this, stomach acid was able to back up my throat at which point I managed to inhale the caustic fluid in addition to getting a nasty acid burn at the back of my throat. Hurts like a bitch.

I've stopped coughing now, but I'm having lung pain and it's tough trying to get back to sleep, It's a pretty disturbing experience and I'm waiting for the Ativan to take away the scared, anxious feelings that I'm having. This is the second time this has happened in a month. The first time, I fell asleep on the couch and woke up to the same thing. I don't know what to do about it. I probably should see a gastroenterologist again, or just see if my rheumatologist can prescribe me some GI drugs that I know can help this kind of thing.

On another note, I've joined a new email scleroderma support group and I really like it. there are less than 20 members, but I like the format a lot more that the group meeting type. Not having to sit in a meeting once a week is a plus since I have no control over what my health is going to be like on that day and another good part of it is that is can just be an ongoing dialogue, not just x number of hours, x times a week. I feel like we've already got a good conversation going and I'm hopeful that it will get better.

Well I'd better try to get some sleep before this thing as I have to leave the house in just over two hours. I've also got to figure out how to tell BF that I don't think that I can sleep in our bed until this is under control. I mean, I take Nexium three times a day, I sleep on a ramp that elevated our bed by six inches, I avoid acidic foods close to bedtime, but none of that is good enough. He's going to be upset. It's really important to him that we sleep in the same bed. It's important ot me too, but not as much as it is to him, and not enough that I'll suffer for it night after night. I'm not looking forward to that conversation.

Ah well, I’ll deal with it tomorrow.

Goodnight all!

Lovenox: Day One

Ouch!

Half a Step Forward

Nothing can just be easy.

My appointment with the fertility doctor started at two in the afternoon on one of the most major streets in Philadelphia. It took me fifteen minutes to park and I didn't see the entrance to the garage right next to the doctor's office and had to park two blocks away.

Now most people will look at that and say "so what?" That's what I was thinking as I pulled into the garage. Unfortunately, those two blocks were up a very gentle slope and I had to stop half way because things started having that wavy, dizzy look about them and I didn't want to fall over in the middle of the sidewalk. By the time I got to the door of the medical office building I was totally out of breath and already dreading the walk back to the car and the drive home.

It's weird to think that two years ago, I was taking the train downtown and walking the five blocks from the train station to the education building four days a week. Or that a year before that I was working full-time in addition to going to school four nights a week. It's more than weird, it sucks.

Anyway, I had a good meeting with the doctor. She's not promising anything, but she's not ruling anything out yet either. The first problem is that I've been on Depo-Provera for three years now and my ovaries are practically in hibernation. They've been showing signs that they're beginning to wake up for the last couple months though, so that may not be a huge problem. The next problem is that estrogen can cause blood clots and while the protocol doesn't call for estrogen, the whole process causes natural estrogen levels to get pretty high, so I might be at a higher risk of developing a clot. They might be able to go with a slightly higher dose of blood thinners to counteract that one. The biggest risk is called ovarian hyperstimulation syndrome. Now this is a risk for any woman going through IVF. The follicle stimulation can get out of control and can release fluid into the abdominal cavity causing pain and congesting breathing. This is obviously a concern for anyone, but a risk that could be deadly for me. So the plan is to start off with a relatively low dose of FSH to see how my body responds before we go full-throttle.

It wasn't all about risks though. There is a definite possibility that this will happen. She also said that we could freeze a mix of embryos and eggs so that if BF and I were to split up before we use the embryos, I could still use the eggs with a future partner of a donor's semen. Not that we're thinking of splitting up, but Pennsylvania law stipulates that in the case of separation, one of the genetic contributors to the embryo cannot use them without the consent of the other party. So while I'm covering all of my bases here, I might as well cover all of my bases, even the possibilities that I think are remote now.  

So in the next couple of weeks BF and I will have to undergo some testing.  We both have to have a battery of blood tests to ensure that if we use a gestational surrogate in the future, our embryos won't be carrying any potentially communicable diseases and to check for blood typing, etc.  I already had an ultrasound to take measurements of my ovaries and uterus (the uterus I could totally see, but jesus christ, ovaries are just dark splotches and that doctor was measuring them and counting and measuring follicles that I couldn't differentiate at all).  Oh and I got to have a pelvic exam with four people in the room in addition to the doctor.  Gotta love an audience right?  It's a good thing I've never been especially modest or I might have been massively horrified.  

After all of the checking of things, I got to sit down with the research study coordinator to go over a whole bunch of paperwork.  I'm taking part in two research studies in addition to the IVF and there was a shit load of paperwork to sign and questionnaires to fill out.  

Once we were finished with all of it, it was five thirty in the evening.  Rush hour in Center City.  I wanted to cry.  I hadn't taken any Percocet or Ativan all day because I was going to be driving and I was in lots of pain and in a pretty shitty mood.  Getting back to the garage wasn't nearly as bad as I was afraid it would be; it's finally spring in Philadelphia and though it isn't warm per say, I love light-sweater weather.  

Turns out that the weather wasn't the only beautiful thing that day, the traffic that I assumed was going to trap me on I-76 for an hour was perfectly smooth all the way back to my mom's house, where the little guy was busy being spoiled.

So on the whole, I'm encouraged.  Things aren't going to move as fast as I want them to, but there's still nothing barring the way entirely.  I also get to participate in some important science that will hopefully help women maintain their ability to have children after chemotherapy.  One study will help them figure out how to mature eggs outside of a woman's body, from frozen ovarian tissue.  The other study will monitor my hormone levels before, during, and after the chemo to help them learn about how chemo affects the hormones that are produced in young women.  Cytoxan causes early menopause in nearly all of the women who use it as a medical treatment, but they don't have any real information on the markers for menopause in young women, only on women who go through menopause at the normal age.  So this will allow them to see if it's the same or different and what determines whether or not the drop in hormone levels will reverse itself.

Oh and on a final note, does anyone else find the beer commercials that advertise the brewing method, such as "triple hops brewing" without actually explaining what that does to make the beer any better totally obnoxious?  I don't know a damn thing about brewing beer, they could add the hops to the beer in sixteen separate batches and I would be no more or less impressed.  How is this an effective advertising campaign?  

And on that note, I'm going to attempt to go sleep.

reality.

Meeting with the reproductive endocrinologist in T-minus three hours. I'm nervous. Not about anything in particular. There's nothing particularly anxiety producing about an IVF cycle that isn't supposed to actually end in a baby. Daily injections, but I'm going to have to start them soon anyway. All of these invasive procedures required that I go off of my oral blood thinners and start on the sub-Q stuff, so in about three weeks I should probably start getting those injections, plus Lupron for a couple weeks, then daily injections of follicle stimulating hormone to make my usually placid ovaries go into overdrive and mature ten plus eggs, which after several days and one injection of hCG, will be sucked out of my engorged ovaries with an aspiration syringe. Doesn't sound like it could be much worse than high-dose prednisone and I'm guessing that when I'm dry heaving on a hospital floor at three in the morning after four or five doses of chemo, I'll be dreaming of needle pricks and hormone-induced psychosis.

If you can't laugh, right?

I bought a couple of wigs last week. They're very cool. It seemed like a good idea at the time. Doesn't sound like a bad idea now. But as I look at them sitting on their fake heads in my room, a short cotton candy pink bob, long black hair with dark blue streaks, and shoulder length electric blue hair, I can't actually see myself feeling up to wearing them while being isolated, either in the hospital or at home. Maybe I'll be in a blue hair mood at some point during recovery, but who knows. I don't even wear a bra when I feel like crap - am I really going to feel like dealing with wig tape? Probably not.

So BF and I went to the fabric store the other night and picked out a bunch of great fabrics to make into headscarves. I got enough of one very cute flannel to make some pajama bottoms out of too. BF looked at me as I was showing him head scarves online and said "You know you're really going to look like a cancer patient in one of those, right?" I guess I won't be a part of the "but you don't look sick club anymore". It doesn't really change anything though. I'm sick either way.

This week has been especially difficult. My hands have been really bad and I think I have pneumonia. I had a CT in the ER on Saturday night, but it's impossible to tell if it's pneumonia or just what my lungs look like without comparing two CTs side-by-side. So I'm trying to get in to see me PCP, but you'd think I was trying to make an appointment for something fun because I can't even get through to the receptionist.

All right, I'd better go get the little man out of his jammies and away from the TV so that he can go to my mom's to be spoiled and I can go downtown to be prodded.