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