Day +20

As far as transplant news, things are pretty unremarkable (so much so that it is almost remarkable! Ha!). My blood counts hit their low over the weekend, but when I had labs done again yesterday most of my counts were already starting to slowly creep back up. Those that weren't rising did not change, so I think the downhill slide is finally over. Unfortunately, that means it is time for the uphill climb. I am very, very tired. My counts did not "bottom-out," as they say, meaning that I do have some counts that stayed in the low-normal range and I was never officially neutropenic, but they are still very low and I can feel myself dragging. My Tacro level has not been tested yet this week (tomorrow's job), but my hands and feet are burning and shaking pretty badly, so I am hoping my dosage will get reduced a bit.

We found out on Monday that I will probably have to go on blood pressure medication. Tacro can cause high blood pressure, and my last two visits to the doctor I have had abnormally high readings. My blood pressure is usually excellent, and even though I know I have no control over it, I feel like I have failed somehow, like I am not taking care of my body. The docs decided to wait out this week and see if it drops, but I am not holding my breath. My other issue of the week has been my magnesium levels. Tacro (of course, what else?) makes your body lose magnesium. Magnesium plays a huge role in muscle function, and since your heart is a muscle, magnesium levels are something that gets watched pretty closely during transplants involving Tacro. My levels are still in the low-normal range, but I am starting to get muscle cramps in my legs and arms constantly. If we can't get my levels to increase through pill magnesium, we have to go to the hospital every day and get I.V. magnesium, which can take up to four hours per visit. So, we are definitely hoping not to have to resort to that! I can just imagine poor Rora having to sit there every day. My labs yesterday showed a slight increase in mag levels, so we are going to stay optimistic that we can get it under control.  

The only other tidbit of news is that yesterday afternoon I started itching all over, nonstop. It lasted all night and is still going strong today. Intense itchiness can be a sign of GVHD, so we plan to talk to the doctor about it tomorrow during our visit. I know it sounds ridiculous, but here's hoping it's the real deal! And hoping that it stops at that and progresses no further! We shall see.

Otherwise, no real news on the transplant front. Things are going well here in Utah, we are just trying to enjoy our lazy days and be grateful for them. Most of the time we watch movies, do crafts, or play games as a family because I get tired pretty quickly if we try to go out and do much, but we have been able to get out a bit and enjoy the city. My parents came to visit this past Friday and I could not believe how happy I was to see family. I didn't realize how lonely I'd felt since leaving home. We are actually surrounded by family here--Colten has more cousins, aunts, and uncles around than I can keep track of. Unfortunately, I do not know any of them well, and I have always been one of those awkward introverts who doesn't know what to say to new people. In any case, it was wonderful to be around my parents, and (needless to say) Rora was so happy to spend the day with them. Saturday, one of Colten's cousins (Shelley) treated us to the Lehi, UT Princess Festival. It is a pretty cool event, and (also needless to say) Rora had a blast! She got to ride in a horse-drawn carriage, play with three new friends all day, meet princes, princesses, kings and queens, and go on all sorts of "quests." She was one very tired, very happy little princess. Mommy had to walk around all day with a second skin of sunscreen, carrying an obnoxious umbrella (because I am not allowed in the sun), and putting hand sanitizer on every five minutes--but it was well worth it. :-) And Sunday, another of Colten's cousins (Mitch) had a get-together at his house that felt more like a Long Family Reunion to me than a "get-together." Ah, the fun of big families. :-) It was also a blast. Rora got to play with so many little kiddos and I got to meet a lot of Colten's family I had never met before--or at least had never really got to talk to. They were so much fun, and it was a great end to the weekend. Life here definitely felt a little less lonely.

Warning:  the rest of this post is coming from a downhearted girl. I realized this week that I really am going to have to give up going back to school in the fall. I missed the application deadline by almost a month, and while the school would make allowances within a certain time frame, I still have not completed my G.R.E., and will not be able to do so right away. Amidst the transplant and everything else going on it seems silly to worry about school, but I feel like all my dreams are slipping through my fingers. We will be stuck in school and in Pocatello for almost a year longer than we ever planned on staying. Not to mention I will be sitting out an entire semester, which is not going to do good things for my memory when it comes to getting back into school and tackling master's level accounting. I guess this is one of those "why me?" moments. It seems like every time I get closer, I have to take ten steps backwards. I am ready to just have a normal life free of cancer. We have worked so hard and so long to insure Rora will have a good future, with lot's of opportunities, and we were finally getting towards the end of a very long road. When both Colten and I finally complete school, we can get a house, settle down somewhere long-term, let Rora make friends and stay in one school, actually make a little bit of money, enjoy life a once in awhile rather than studying all the time. It is a really simple dream, but a good one, and I guess I just feel bitter that it is, once again, being pushed aside. I keep telling myself that God always has better ideas than I do; He has a better plan for my life. But then I have to wonder, what could He have in store that is really better than what I came up with? Because it sounded pretty great. Whatever He's got has to be downright amazing to top it. But, what if it isn't? What if His plan is for the transplant not to take? I wouldn't even be around anymore to worry about anything. How is that better, or good for me, or my family? I don't know. I can't find the answer to that in the Bible, or in my prayers. I ask for peace, but I still feel fear, doubt, worry...

This July will be ten years of dealing with this accursed disease. I found the lumps not long after my birthday, sitting in my basement, watching a Friends episode, and casually rubbing my hand on the side of my neck. I'll never forget the fear I felt when I detected that first lump. Images of bald children in heart-wrenching commercials flashed through my head. Cancer is so much a part of our society that I felt a single small lump, with no history of cancer in my family, and immediately believed I had it. I called my best friend right away, crying and babbling that I had cancer, what was I going to do? She (and her mom, whom I loved dearly) both calmed me down, and I eventually talked to my parents about it. They called our family physician, who listened to their explanation and blithely told them it was nothing but teenage hormones--they apparently make lymph nodes swell and recede all the time. Ah, relief. And, being a teenager, the matter was forgotten for awhile. Except the lump never went away, and that fall we pursued it further and got the official diagnosis November 10, 2003.

Ten years. In some ways, it saddens me that I have fought this cancer so long and have yet to beat it. It feels like a never-ending battle, with an inevitable result. And let it be known, if I ever do lose this battle, my memorial in the newspaper--or wherever else--better not say that I "succumbed" to the disease, as so many of these things do. No, I have never, and will never "succumb" to cancer. If I lose, it will be because it murdered me, not because I gave in. But, hopefully, the distinction will never have to be made, because I also look at ten years and think of all the blessings I have been given in that time--not the least of which being my husband and my miracle daughter--and all I have been able to accomplish, and the time that I have been given that doctors say I should not have had. Actually, I probably could not count the things I have been able to do, or have been given, that doctors say should not be. And that gives me hope.

I have no idea what the purpose of all this is, or if there really is a purpose. One of my favorite singers lost his wife to cancer, and he still tells her story as part of his ministry. I still remember hearing it for the first time. He related how his wife was always cheerful and happy with her circumstances, in spite of the fact she was dying, because she believed that God was going to use her illness--and her death--for a greater purpose. I don't think I could ever be as good or as faithful of a woman as she was. I hope that there is something to be given to God's glory through my life; I hope He uses and has used the past ten years to change others, to impact lives, to spread His news. But, in the end, I just want to watch my daughter grow up, and get married, and do all the amazing things I know she is meant to do. I guess I can only hold on to the fact that He knows better. After all, I never wanted to get married--and I DEFINITELY did not want children--and if He had not overruled those plans I would have missed out on the two greatest blessings of my life. You just never know.

Alright, pity party over.

Rora Moment:  I was tickling Rora, and I abruptly stopped and jokingly told her I could not play anymore--my hands were dead (the same lingo we use in our house for worn out batteries). She picked up my hands and said, "We have to charge them!" And I asked, "How am I going to charge my hands?" She responded, "The doctor does it." I laughed and said, "So, your hands have to be charged, too? Who charges your hands?" She replied, "The little doctor, Mommy!"

Something to hold on to, a personal favorite of mine:
 

"Our deepest fear is not that we are inadequate. Our deepest fear is that we are powerful beyond measure. It is our light, not our darkness that most frightens us. We ask ourselves, Who am I to be brilliant, gorgeous, talented, fabulous? Actually, who are you not to be? You are a child of God. Your playing small does not serve the world. There is nothing enlightened about shrinking so that other people won't feel insecure around you. We are all meant to shine, as children do. We were born to make manifest the glory of God that is within us. It's not just in some of us; it's in everyone. And as we let our own light shine, we unconsciously give other people permission to do the same. As we are liberated from our own fear, our presence automatically liberates others."
–Marrian Williamson