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."