Day +5

Well, this is a little more intimidating than I imagined it being:  the very first blog entry. I laid in bed last night composing snippets in my mind, and I should have written it down then because I seem to be a better wordsmith in the late hours than in the sunshine! But, here goes nothing. The purpose of this blog is to keep those interested updated during the transplant, as well as to maintain a record for myself for future writing or just for future browsing, so I apologize now if it gets a little long-winded at times.

Day +5 seemed like a good day to start on, a nice multiple of five; I have always liked those. Just to clarify, every day after the transplant is a + day, so we are five days out from the transplant. It is hard to believe that I have been here for over a week already! The first week flew pretty quickly between getting the apartment settled, visitors, doctor appointments every day, chemotherapy, radiation, and finally the transplant. This week seems to be passing at a much slower rate, and I am finding that worry is setting in more now that I have less to occupy my time. I do not sleep well (constantly changing body temperature, like having hot flashes and having fever chills one right after the other--I do not recommend it) and so my days begin early and end late and there seems to be little to fill the space in-between. I feel purposeless and somewhat helpless in my own home, both of which are starting to get me down. So, I am devising some projects for myself for the rest of the summer, starting with this blog.

The transplant is pretty unremarkable so far. As my nurse said during my transplant, "People always think bone marrow transplants are so cool, but really, they are super boring." Nothing any different than getting basic I.V. fluids, or a transfusion. You just lay in a bed and the stem cells pour into your I.V.--pretty lame for such a big deal. The nausea started the day before the transplant, so my doctors are fairly confident it is due to one of the medications I am taking to prevent infections and rejection of my sister's stem cells and not due to the stem cells themselves. I suppose that is good news, but it does not get rid of the nausea. But, I guess I should not be complaining since there are much worse side effects I could have.

We had labs done this morning (I only go to the hospital three times a week, which seems strange to me for a bone marrow transplant, but there you have it) and my blood counts still have not dropped drastically. The nurses/doctors seem unconcerned, but I wonder privately if the transplant is even working. They expected my counts to "drop out" in the days following my transplant, and then eventually they would build back up, just like with my autologous transplant. However, my counts have remained steady. The nurse today said there are a "rare few" who never have their counts drop, but it worries me that I am, once again, the anomaly. Truly, in all things cancer, I would just like to be unremarkable. But, with no dropping blood counts, I feel pretty normal, aside from the nausea. I am pretty tired (anemia), but not really any worse for the wear (I say this with my body chock full of anti-nausea medication, I will try not to post any other time or the updates will probably be less informative and more of a tirade against the world, ha, ha, ha). The biggest bonus is that I do not have to wear a mask like other patients whose counts do drop. I have been dreading that from the beginning--they are hot, uncomfortable, and pretty much shout to the whole world, "HEY! I AM A CANCEROUS FREAK! THEY WON'T LET ME BREATHE YOUR AIR!" Unfortunately, my central line sticks out enough I think I still get the "cancerous freak" label, even though I am not restricted from the air supply.

My biggest battle is currently with my anti-rejection medicine, Tacrolimus. It makes my hands and feet feel like they are burning, and my face feels flushed. It may also be causing the nausea. Now, it is starting to make my skin sensitive, so when I rub my feet it leaves a burning sensation. I feel like my body wants to crawl out of itself, but not because of the transplant, just because of all the bad medications I have to take. Tacro, when not in prescription form, actually comes in individual bags all labeled "Hazardous." Comforting, right? Not so much. It is supposed to make your brain a little foggy, too, but I have not noticed that yet (although, if it does start to go, I probably still won't notice). I told Colten this morning that he did not need to make our bed every day while we live here and he looked at me like I might have gone off the deep end, but I think everything is still working up there, I just wanted to lighten his load a bit.  

Last week I found the journal I kept during my last transplant and I had to laugh at myself. All things are relative to what you are going through. I was agonizing about one month of being in the hospital, having a central line, yadda, yadda, yadda. That whole event was a total of 34 days, and then my life returned to normal. What I would not give to only be here for 34 days! And to get this stinking cord out of my chest. All the nurses go on and on about how nice they are, but they don't have to try and sleep with them, cover them up, deal with the soreness, or worry about showering with them. Yes, I am a little bitter about it. But, I digress. My point is that I thought that transplant was the worst thing I would ever go through, and it really wasn't. What is 34 days? Nothing. And really, what is 100 days for this transplant? In a whole lifetime? Not much. And I get to spend all those days (praying!) with my amazing husband and my gorgeous daughter. Pretty good deal, really. I cannot wait to look back at this and think, "Huh, it was rough, but it's over, and I'm fine now." I got my stitches taken out this morning (from the central line placement) and I worked myself up for a big ordeal that ended up being just a slight tug and then it was over. I guess that's how I feel about this transplant. I have been so worked up, and it will be over and done before I know it with just a little tug.

That's the current status with the transplant, as for our living arrangements, there are definitely worse places we could be. We ended up with a nice apartment that is actually a lot larger than our little trailer back home, and yet I find myself increasingly homesick. I have moaned and complained so many times over the past three years about our choice to live in a little mobile home in a crappy little trailer park to save money on renting during school, and I made the mistake of forgetting that my Father has a sense of humor, and I think He enjoys using it when His children whine even though they are given so much. "Really, Jaymi, you don't like your trailer? Can't stand having your own vegetable and flower gardens, your own yard, more than one parking spot, no neighbors above or below you? Well, let's change the scenery for you, I would not want you to be unhappy." Point taken, loud and clear. I will go home and be grateful. Salt Lake is beautiful, the mountains are literally at your door, and I think you could dub the place the City of Roses there are so many gorgeous bushes! But, the traffic is ridiculous, it is always a humid 90+ degrees (how can a place two and a half hours from my home have such a different climate?!), we have lot's of neighbors, no yard, and no privacy. I miss our little town of Pocatello where you can go anywhere, anytime and never plan for traffic, and we have our own home. But, as Rora likes to remind us, "Our new house has a pool!" And she and Daddy take advantage of it almost every day--so I am thankful.

Well, not much more to say today, that pretty much sums everything up. I will end this post with a "Rorie moment" from this morning. After our hospital visit we stopped to get a Sprite for my stomach, and the closest place was a Carl's Jr. restaurant. Rorie, thinking we were stopping for food and knowing it was much to early to eat lunch, said, "Mommy, I am not hungry." "That's fine," I responded, "you don't have to go in." As we pulled into a parking spot, a huge Playland came into view behind the mirrored walls of the restaurant and I heard Rorie squeak, "I am hungry! I am hungry!" Needless to say, I drank my Sprite inside and she enjoyed the Playland. I love my girl.

Something to remember and live by that I saw floating around on Facebook: "I am too positive to be doubtful, too optimistic to be fearful, and too determined to be defeated."