A new day

There are two particularly frustrating scenarios to face when one is writing: the first is when you can think of nothing to say, and the second is when there are so many thoughts in your head that it seems impossible to put them all into some kind of coherent order.

I suppose I should catch people up with what's going on. I had the stem cell transplant yesterday, and it came off without a hitch. Other than having little to no appetite, things are going really well. I am sailing through so far. Of course, there are harder days to come when my counts completely tank. I'm really hoping that they will be able to release me by next Friday, or Monday the 12th at the latest. Still, it feels really far away. I am really really tired of being here.

I wish I had more to tell you, but so far it has been pretty boring. Please keep praying for me and my family. We need it more than I can say.

Day 5, 673,999

Ok, so that tittle isn't exactly accurate, but that's how it feels to me. I am going to stay positive in this blog, but if I were to complain I would say the following things:

1. Low-bacteria hospital food stinks
2. It stinks being woken up every 3 hours for vitals
3. Peeing in a basin isn't as easy as it looks.
4. Hospital beds aren't terribly comfortable.
5. I hate wearing a face mask every time I leave my room.

But I am not going to complain. In fact, I actually am doing really well so far, praise God. It's nice not to feel too bad yet. I know the worst is to come, but at least it isn't here yet. I feel bad for Justin and Beverly who don't have too much to do when they are up at the hospital. When I feel decent, I am pretty self-sufficient. However, I have the feeling that their day is coming soon.

I hope each and every one of you had a blessed Christmas.

I wish

The first chemo has come and gone, and it turns out that I am handling it pretty well. I don't have any nausea and I'm just a little tired from my night. Everyone always says that the hospital is the worst place to get rest, and it turns out that they were right. I got about six hours sleep last night once everything was said and done. Probably the most interesting/funny part was when the tech came in to weigh me. At the time, I was on the laptop and the gentleman asked me if the laptop was heavy. I responded that it weighed 5 lbs or so, and he thought it wouldn't be a big deal, so he pressed the button on the bed to check my weight. I'm not going to tell you how much I weigh, but suffice it to say that the weight he called out was about 60 lbs lower than my accurate weight. I told him that it wasn't correct, and he asked if it was off by those 5 lbs or so. I informed him that it was closer to 60 lbs off, and he wasn't convinced, so he brought in another scale that eventually gave him my real weight.

Everything is just plugging along. I'm waiting for news on various friends and family who are either in the hospital or having surgery, and hopefully we'll know soon how each of them are doing. So, officially I have accomplished day 2 of 21.
19 more to go.

Day -7

According to the hospital folk, this is Day -7 of my stay. The stem cell transplant day is the official Day 1. It's been a very uneventful day mostly, because I didn't start the chemo today. I'm here in the new hospital, the Ronald Reagan Medical Center, which has only been open since August and it's super nice. The room I'm in is very nice, with a reclining chair and a couch which pulls out into a bed. There's lots of storage and all my favorite cable channels. The staff has been very attentive so far, and the low-bacteria menu isn't too bad. The best part is that the room doesn't smell too hospitally.

Tomorrow begins the chemo, as well as lots of pills and other medical stuff. I felt very bad for my mother-in-law because it was so boring today, but I guess that ultimately, it's better when a hospital stay is boring.

In another note, I wanted to ask for prayers for my friend Nell, who is 16 and going in for a brain surgery tomorrow. We're praying that she comes through it with no complications.

Got to go now....time for them to take vitals.
Otherwise, it's all quied

This is it

As I sit here roughly twelve hours before I am admitted to the hospital, I am starting to get a little antsy. It's the same way anyone would feel before embarking on one of life's great journeys, although except for college, most people's great life experiences don't quite involve so many drugs. I am so grateful for this opportunity at a shot at a cancer free life, but it's hard to mentally prepare myself for the adverse side effects that I will experience over the next few months. I promise that I will do my best to keep everyone up to date on the day to day hospital excitement. I will undoubtedly have some stories. In return, all of you can try and have a lovely fun Christmas with your families and friends. I would appreciate everyone continuing to keep me in prayer, as well as my family...especially my Dad. We could use all the prayer we can get right now.

Thankfully, my mother-in-law Beverly is here for the next two weeks, thanks to the sacrifice of Bobby(my father-in-law). He's holding down the fort for a while so that Bev could come and take care of us, and goodness knows we need it. At least this way I know that Justin will eat something decent from time to time. Honestly, it almost feels as if I am turning myself over to be incarcerated. I mean, I am going to be living in a little room which I can't leave, and people I don't know are responsible for my entire life. Hopefully the food will be slightly better than hospital food. For those of you who have my cell number, I will have it with me. In the case that I have bad cell reception, I will probably post my hospital room number.

So, here's to my first (and hopefully last) hospital stay. May it be as brief and yet as successful as possible, with as little hiccups along the way as possible.

See you on the flip side.

Packing for the weirdest vacation ever

Now that the dust of has settled on the news of the stem cell transplant, it's time to get ready for the next 2 months. It's like packing for the weirdest vacation ever, where you only need pajamas and things which don't contain any bacteria. Plus, we have to get the upstairs ready for the stream of caretakers who are going to be staying with us over the following weeks. But everything is being done with great thanksgiving. I keep telling people that this stem cell transplant is my Christmas present, and they typically respond with pity. However, I mean it with sincere joy that I get a transplant for Christmas. It's kind of ironic that it is taking place during this particular season when we celebrate Christ's birth because some people consider the date of their transplant their second birthday. It's the start of their new life.

So although it makes me sad that I won't be with my family and friends for Christmas, in some ways this transplant makes this advent season so memorable and special.

Finally, I feel the need to publicly acknowledge a couple of people. I generally don't do this because if had to list all the people I am thankful for I could go on forever. However, these warrant some special notice. I posted several weeks ago about how we had an exceptionally large co-pay to make for some drugs that I needed. When I wrote about it my purpose was to let people know what was going on, never to solicit financial aid. There were some people who took it upon themselves to try and help us out with our expenses and they sent us money. Although we never asked for it, we were overwhelmed with gratitude for their generosity. I don't want to write their names, because I don't want to upset them...but you know who you are and the thank you notes are in the mail. I just can't tell you what a help it was. It ratchets down the stress on an immensely stressful situation, and we will never be able to thank you enough. (This is not a solicitation for more funds.)

Of course, there have been all of you who have sent a card or a book or a hat, and those who have cooked us a meal and bought us tequila. (For Justin, not me.) Thank you. From the bottom of my heart, thank you. I could never really express to you how much each one means to us.

!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

I am to excited to think of a coherent title to this blog. That's because I just got the call from my transplant coordinator. Our prayers have been answered!!! My cytogenetics game back completely normal...no wonky cells! That means the stem cell transplant is back on! We learned in English class that we should diversify our punctuation in a paragraph, but forget it! I'm too excited! Yippee!!

Good Day

This has been a great day today. To begin, they got all of the stem cells they needed from me yesterday, so I didn't have to do any more harvesting today. That meant that they were able to remove both my picc line and the despised groin catheter. They placed my chest catheter, which isn't too bad. It's on the same side as my port was, and the doctor placed it around the old scar, so it reduces the number of scars I will have. It went really well and I didn't have any complications from the anesthesia.

On top of that, I have a friend who was having a hysterectomy today because they thought she had tumors on her ovaries, but after they did the procedure they discovered that the growths weren't malignant. It's the best news. I am so happy, I just can't even tell you. We have been praying so much for her, and this is such an answer to prayer.

It's been a smooth, nice day with good news all around. I still don't know about the stem cell transplant being a go or not, but I am enjoying the good days when they come.

Hope I have more good news to give you soon!

Howdy, Hermaphrodite!

Now, if that title doesn't draw you in, nothing ever will. We'll get to that in a minute. To begin, today like yesterday was a very long day. Justin and I left the house at 5:45 this morning in order to get down to UCLA by 7 am. I had to get there early in order for them to check me out to see if I needed platelets. Justin dropped me off and went to work, whereas I had to go and get blood drawn. Turns out that my platelet level increased overnight to a level where they didn't have give me anything after all. So, I had an hour and a half to kill before my 9:45 appointment. I read/slept in the lobby until it was time, and then I made my way up to the hemaphoresis clinic. (This is where the story gets way more interesting.)

This was the morning for the beginning, and hopefully the end, of my stem cell harvest. It's important to know that in order for them to harvest cells, they either have to be able to get to veins in each arm to draw from, or they have to put in a catheter. Well, of course, they couldn't get a vein in my right arm, and the picc line wasn't an option, so they had to put another catheter in me....in my groin. Yes....I said groin. Now, this is going to get mildly graphic, so you have been warned.

As soon as I made it to the clinic and signed the consent forms, I was then instructed to remove everything from the waist down. It's also important to know that the clinic is set up in a square with a nurses desk in the center, and 5 beds spaced around 2 of the walls. There's nothing like knowing that a thin hospital blanket is all that is separating the goods God gave you from a room full of people. Anyways, the Doctor eventually showed up and inserted the groin catheter. It's inserted into a vein in your groin, in the crease between your thigh and your privates. Once he was done, I had these two giant tubes sticking out of my groin which they hooked up to the stem cell collection machine. The look of the machine is reminiscent of a dialysis machine, but it works in a different way. Because of the tubes and the placement of the catheter, I had to remain sans clothes for the entire 5 hours of stem cell harvesting. It meant that if I had to pee within that time period, it meant bedpan. Now, do you think I managed to hold it for 5 hours? Of course not. So, finally I told the nurse that I had to go and she brought over the bed pan. Now, I've never used one before, so I was unclear on how exactly it worked. She had me lift up my butt with my legs, and she put underneath me a bed pan and told me to go. There I was, in some sort of yoga position, holding myself up on a bedpan, and the physics of the angles of the thing meant pee was going everywhere before hitting the pan. And, of course, the nurse was called away mid-stream, so I spent 3 minutes holding myself precariously over a plastic tub of my own urine, willing it not to spill anywhere and hoping my legs would continue to hold. Fortunately, she returned before anything more catastrophic happened then the loss of the remaining shreds of my dignity. Eventually, that was cleaned up, and the harvest continued.

Finally, after 4 hours I finished my harvest for the day. Since we are not sure if we got all the cells we need yet, they had to leave the groin catheter for the night. The nurse wrapped the tubes in gauze and then wrapped it in that bandage stuff which you get when you give blood. Then, I was allowed to finally put on my pants. However, I then noticed an "interesting" result of this. When I put on my pants, because of how the tube was wrapped and the placement, it appeared that I had a male bulge in my pants. Hence the hermaphrodite comment. And, if you think that i am exaggerating, I will have you know that Justin burst out laughing as soon as he saw it. I think I said earlier that during my bedpan incident I lost the remaining shreds of my dignity. That was incorrect. It was at the point that I noticed my new appendage that I actually lost the remaining shreds of dignity. Therefore, I will not be going out in public until it is removed, which will hopefully be tomorrow.

Tomorrow they will hopefully removing my picc line and my groin catheter and replacing it with a chest catheter. So, hopefully my self esteem will rise again tomorrow. One can only hope. And maybe you got a giggle at my expense...someone really should.

A very merry weekend

Don't you just love the Christmas season? I do, and instead of sitting around the house this weekend worrying and falling into some sort of anxiety fueled fit, I decided to decorate the house and have a small party. Justin and I bought decorations for our "new" Christmas tree which was given to us to our good friends, Shannon and Gabriel. Shannon had warned us that it wasn't a very expensive tree, but Justin's reply was that he didn't care if it looked like the Charlie Brown Christmas tree as long it was free. Luckily it is a lovely tree, and we have the coolest star on top of it. We had some friends come over Saturday night and all played "Would you rather?" which is not a game I would suggest playing with 5 engineers.

Anyways, I've been up since 5:45 because I had to get over to UCLA to get some blood tests done. I managed to make it back in time to stick myself with neupogen at 8, and then make Justin breakfast before he went to work. So, I'm ready for a nap.

I still don't know yet whether the stem cell transplant is a go or not. I will know in the next few days, and as always, I will post when I know. One thing, though, is that I want everyone to know that even if I can't do the stem cell transplant, that doesn't mean that this is the end of the line for me. Far from it, actually. It's just that the transplant would be my best option. I am starting to get the feeling that some people thought that it was all over for me if this doesn't happen, and that's just not the case. That doesn't mean that I won't be severely disappointed if it doesn't happen, but I won't go jumping off a cliff or anything. I just wanted to clear that up.

Waiting, waiting....

Well, we're still waiting to get the bone marrow test results back to see if my cells come back normal. Waiting sucks. That's about the only thing I can say about it. My transplant coordinator seems optimistic, whereas the doctor just sort of shrugged and said, "We'll see." Not the kind of interaction that most engenders confidence. I waiver between confidence and despair, and I suffer all the ups and downs which come from riding the roller coaster. My gut instinct is that these cells are going to come back normal, but my Eeyore side pushes me to brace for the worst. When I know what's what I will post it, but likely if it's not the news I want I will then curl up into a fetal position for a while.

Of course, when I start to feel sorry for myself, I have to be reminded that things could be much worse. I always meet people in waiting rooms, and yesterday in the midst of a 3 hour wait to see the doctor I met a 25 year old woman who has aggressive b-cell lymphoma, as well as a husband and a 2 year old. She's hoping to get a stem cell transplant too. I can't even imagine trying to do this while also being a stay at home mom to a 2 year old. Her name is Sharla if anyone would like to add her to your prayer lists.

The moral of the story is that life isn't fair, but it is beautiful.

/sigh

5 days of injections down....quite a few more to go. I am happy to report though, that both Justin and I have given the injections with no hiccups. Even better, they apparently aren't going to cause me any major bone pain.

So far, everything has gone so well, and so the pessimistic part of me is cringing in my head waiting for the other shoe to drop. But, I think I am going to take advice from one of my aunt's and stop cringing. I am going to expect that things are going to work out. I mean, I feel like I have so much more to do in life than sit on the couch and convalesce. I want to be doing something, not being sick.

In mere minutes, Justin and I will be heading down to UCLA once again to sign all the consent forms for my stem cell transplant. If it is anything like our last couple of trips, we will be there for hours. If everything goes well, I could be having the stem cells harvested as soon as next week. So that is what I am going to hope for.

You'll have to forgive me if my blogs become increasingly tinged with anxiety. It's just that as all of this hurtles closer and closer, with uncertain outcomes and possibilities, I struggle to put off my nervousness. But I am determined to remain positive. I'm sure you can understand.