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.


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.


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.


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.