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

Day +11

Whew, well, the last few days have been quite the adventure in our part of the world. Things seem to have finally settled down, so I wanted to write a quick post. Eventually, I plan to jazz up my blog a bit with some pictures or something, but for now it will wait.

Last Thursday, I got a small taste of the problems that can come with allogeneic transplants. Most of last week I had insomnia, fluctuating body temperatures, nausea, and so forth; a nice assortment of issues but none that were truly devastating. Thursday morning I woke up barely able to move without feeling like I had to throw up. I could not keep my medicine, food, or any sort of liquid down, and after a very long day and night, Colten called to set up a clinic appointment on Friday morning. I met with a new P.A. somewhat unfamiliar with my case, and he decided to walk through everything that had happened up until that day step by step. He adjusted some of my medication amounts, took me completely off others (magnesium in pill form, apparently a lot of people just cannot handle it), and--after receiving back my blood work and seeing that my kidneys were starting to get "severely irritated"--he also gave me some I.V. fluid to help my kidneys flush everything in my very dehydrated body. Along with the I.V. fluid, nurses pushed two I.V. anti-nausea medications (that contained heavy sedatives) and, while I wanted nothing more than to curl up and sleep the rest of the day, I started feeling more human by the minute.

At this point I should insert another huge blessing: while being sick, my neck went out of place and the headache and neck pain only added to my increasing nausea. I could not take any pain medications because I am not allowed to have any typical meds like Tylenol or Aspirin (fever reducers) since fevers are one of the biggest signs something is wrong during a transplant, and so I cannot take anything that might mask one. My prescription medications (heavy narcotics) make me nauseous (as they always have) and so were not a good option as I grew worse. But, my brother-in-law happens to have some old chiropractor classmate connections in the area, and he talked to one who was more than happy to adjust me. Not only did he adjust my neck, but he offered to help anytime I need it this summer. He was one of the most positive, uplifting people I have been around, and I left feeling physically fixed and mentally happier. We stopped by his office just after our visit with the doctor, and I, feeling a million times better, pretty much slept the rest of the day away.

We got a call around 6:00 pm telling us that the Tracrolimus (these nasty pills are going to be my biggest trial in this transplant) levels in my blood were a 26.5, which is considered toxically high. The nurse's exact words were, "I heard that you came in this morning feeling very sick, and I can definitely tell you why." How it works is that the pharmacists/doctors set "goals" for my Tracro levels during different stages of the transplant. It is my primary anti-rejection medication, and so my "goal" is higher at the beginning of the transplant (should be between 15-20) and then slowly decreases the further I progress through the transplant. I just recently found out that people who receive full allogeneic transplants--meaning that they receive much harsher chemotherapy and are actually hospitalized for the majority of the transpant--have much lower Tracro goals because their immune systems are so reduced there is less chance of rejection. My transplant is actually called a "mini-transplant" (nothing "mini" about it!) because my chemotherapy and radiation regimen only slightly weakened my immune system, and therefore there is a greater chance my body will reject my sister's stem cells. So, there are benefits to both versions, but I think I would rather wrangle with more Tacro than be hospitalized. Plus, because of my history and previous transplant, my body would not hold up under a full transplant.

Anyway, I was instructed to stop taking my Tacro and told that I had to come in again Saturday morning to have my levels retested and receive more I.V. fluids to try and help my kidneys deal with the overload of Tacro. Patients have actually gone into kidney failure because of Tacrolimus; it is a bad, bad thing. I felt amazingly wonderful on Saturday. It was the first day since this all began that I was nausea free and we decided to explore! We splurged and tried a local pizza parlor for lunch, and then we just drove and walked around our "little" city of Midvale. When we came back home, I cleaned the whole house and my hubby hung up all our decorations and got everything settled so that our apartment is finally finished! We took our dogs on a long walk that evening and, as I walked down the steps leading to our apartment, I caught my breath at the view of the mountains right outside our door. I had literally never noticed it before. They are so beautiful, and so close, and we get to see them every time we walk out the door. What an amazing blessing.

Saturday night, we got another call from the hospital. My Tacro levels were at a 23.5, not toxic but still high, and they wanted me to come in again on Sunday morning just to have the levels checked once more and insure that they were continuing to decrease. I was put out at having to, once again, make the thirty minute drive to the hospital, but I was still instructed not to take my Tacro, so I tried to be grateful for the respite. Sunday dawned, a gorgeous Father's Day, and we made the trip into the hospital once more. It took about five minutes to have my blood drawn and then we were on our way. Colten still had a Barnes and Noble gift card left over from Christmas, and we decided to check out Barnes and Noble in the big city as something fun to do for his day. Little did we know that Barnes and Noble is actually part of one of Salt Lake's biggest shopping centers, The Gateway.

When we arrived and finally found parking we contemplated skipping it, but with my blood counts still in the normal range and me still feeling great, we decided to go ahead and walk around the center. What we found was what makes big cities so appealing, I think. There was a sidewalk chalk drawing contest going on in support of foster care and foster parent awareness, and the images drawn on the concrete were breathtaking. We walked around and viewed probably close to 30 or 40 contestants' entries, most still being drawn, and then stopped to listen to a local choir, comprised of around 140 members (only half of which were at the shopping center) sing Miley Cyrus's "The Climb." Now, anyone who knows me well knows that I am not a big Miley fan, but this happens to be one of my favorite songs, and it was a pretty emotional moment for me watching a little girl (perhaps 10?) singing the first verse, and then hearing the entire choir join in for the chorus that is so relevant to my current circumstances. I've always believed that God tries to talk to us, to encourage us--whether it is a friend when you need it, a stranger doing a kind deed, or hearing a song that speaks directly to your heart at the perfect moment. For those who don't know the song, it is worth a listen. After the show, which one would never find in a small town, we made it to our destination and even found a new book series to start. We spent the rest of the day lazing around, and took another long walk that night--another great day. We called the hospital that night to check on my Tacro levels and found out that they had dropped to 12.1, so I knew I would be starting up on my medication again come Monday.

So, Monday morning, we drove in again for an actual scheduled appointment. My blood work showed that my kidneys were recovering nicely, the pharmacists adjusted my Tacro dose to a much smaller amount, my red blood cell count is still normal, my platelet count is normal, and my white blood cell count has dropped, but is still in the low-normal range. My P.A. said it is looking more and more like my counts may never completely drop out, but if they are going to, it will happen this week. Now that I have felt well for a few days, I am hoping they don't drop out and make me feel crappy, but I am also still worried that the transplant is not taking. Only time will tell. My P.A. spent the rest of the visit talking about graft-versus-host disease (GVHD) and its indicators as that could start happening virtually any time now. It is best if you get a little bit of GVHD, because that means the new stem cells recognize your body is different, and they will be more likely to find and attack the cancer residing in it. However, a little bit of GVHD could turn in to a lot. I am very scared for the next stage of the transplant; this is what makes these types of transplants so dangerous. My prayer is that I just get a little rash, or something very minor, so that I do have some GVHD, but nothing severe. Fingers crossed!

Today is the first day since Friday we have not had to go to the hospital. It has been a nice, leisurely day, and my new Tacro dosage does not seem to be causing the problems my larger one did. Here is hoping for continued good health.

The Rora Moment for the day:  Colten was getting Rora ready for bed and was tickling and chasing her around her room.  She fell and banged her knee and promptly turned to Colten, "Daddy, we can't break me, cause then God has to remake me!" :-)

And, something to live by, another tidbit I saw floating around on Facebook:  "Sometimes you have to get knocked down lower than you have ever been, to stand up taller than you ever were." 




 

   

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."