Day +94

Wow, I think I just set some sort of record for how quickly I posted another blog after the last one. Must be getting better at this. ;-) I thought I would snag my last chance to write a blog from the Utah area; from here on out there is nothing but packing, doctor's appointments, people visiting, surgeries, loading trucks, and so on and so forth. My sister, Jen, is staying with me for a few days until Colten comes back, and then we have got to pack and load like crazy! Most of the house is already packed up and ready, but there are always a few last boxes that can't be packed and sealed until right before you go. Thankfully, we had the foresight to bring as little as possible, so the job is not as large as it could have been (and it gives me something to do with my time, so I am grateful for that).

As far as the transplant goes I have one last doctor's appointment on Wednesday that is actually a typical "clinic visit," and then I have a 100 day review on Thursday and I GET MY LINE REMOVED!!!!!!!!! Wait, sorry, you might not have seen that:  I GET MY LINE REMOVED!!!!!!!!! WAHOOOOOOO!!!!!!!!!!!! Alright, got that out of my system. I keep imagining what it will feel like, but I have honestly had it so long I just can't even fathom how wonderful it will be not having something hanging out of my body that cannot get wet, gets yanked on constantly (OW), is always poking weirdly out into my shirts (gaining me more strange looks than I care to think about), the list goes on. THANK GOODNESS!

I have developed a rash over the past couple of weeks, so my doctors are freaking out a little bit. We will see how much they are really freaking out on Wednesday since the rash has gotten a little worse rather than improved. :-( Here is hoping they don't give us too hard of a time about it, and that it does not lead to a much worse form of GVHD. Having just a simple rash (as itchy as it may be) is good, good, good. So, to sum up, line removed, slight rash, going home this weekend, wahoo! :-)

I am very excited to finally be going back to Idaho. I am also very sad to be leaving Utah. I have truly fallen in love with the area. Whenever I look around at the slowly emptying apartment, or hear my voice echo off the bare walls, I can't help but feel a pang that it is almost over. I remember when my mother-in-law and brother-in-law helped us move in to our apartment. A ton of Colten's family showed up to help, but Laurie and Cody were the last ones to leave. It was all I could do not to attach myself to one of their legs and refuse to let them leave--or force them to take me, too. I was so sad to have to stay in our foreign apartment, in a new, huge city full of places and people I did not know. Now? It is all I can do not to attach myself to a door or the kitchen counter and refuse to leave. ;-) I just love it. I like the apartment complex where we live (with a perfectly manicured lawn I don't have to take care of), the pool that Rorie can swim in every day, the people here (they are just so NICE), and the whole culture of our little city (vegetarian options and organic food/supplement stores EVERYWHERE!). Unfortunately, Idaho is very much a meat and potatoes sort of state. For a lady who is not such a big fan of meat, and one who would love to live more naturally, being in a state where everyone eats meat and there are almost no natural grocers because nobody gives a dang, I don't mesh well with the culture. But most of all, I will miss my mountains. And yes, I said mine. :-) They are right there as soon as you walk out our door, visible from all the places we drive on the highway, and lately they have been shrouded in wispy clouds every day as it rains. They could not be more beautiful! We are so richly blessed to have been in such an amazing place while undergoing this whole deal, and oh how I am going to miss it.

Well, I think that is all I have to say about life here in Utah. It has been hard, and scary, and sad, and life-changing, and empowering, and wonderful. My heart breaks the more I write about it ending, and so I don't think I will write anymore. Instead, I will just allow myself to feel the emotions, cherish the memories, and move on to whatever life is going to throw me next.

Now, I know you thought you got out of this easy and had a quick blog this time, but let's face it, that's just not my style. :-) I have been feeling more and more depressed as time goes on, and this week I seem to have had a number of wake-up calls. First, my Aunt Becky sent me a video of an amazing woman who had beat cancer (of various kinds) three times. Now, that is not an entirely unique story, lot's of people have managed to do the same, though it is never (by any means) a small feat. What was amazing was the fact that she had also lost her daughter to a brain tumor. When she revealed that in her speech, I was struck thoughtless because I never would have guessed she had experienced such a devastating ordeal based upon her joy and determination to live her life. She said something that stuck with me, something that I will remember forever. She said, "Most people think the worst words you could ever hear are, 'You have cancer.' They are wrong. The worst words you can ever hear are, 'Your child has cancer.'" There has never been a truer statement made. And it made me think: I am so, so lucky. I have cancer. Terminal cancer. So what?! My daughter is healthy, happy, and HERE. Yes, my life has not been cake and cookies lately, or really at all the past ten years. And, as my beautiful big sis (Jess) told me, I have a right to feel bad, and go through whatever emotions that brings up. But, I should never feel so down that I can't remember how lucky I still am, and how many blessings I am given every day.

I see my little girl every day, but I really watched her this week, and I realized that she is one of the happiest people I have ever met. Why? Well, I wanted to know that, too. So I have been trying to live life through her eyes, and there are some things my daughter has taught me, and the Rora Moments for today:

1. To see only beautiful things. This one has a back story. My husband has been working his tail off to get our house ready for me to come home, and he had to finish up our new kitchen, as well as get everything put back together and clean the whole house. I ended up seeing the house before he got everything done for just a brief spell, and I was pretty downhearted at how it looked and everything that needed to be done. Alright, call it downhearted or outright upset. I left my house pristinely clean at the beginning of the summer, and went back to the remains of a tornado ripping through. But our new counter tops and cupboards were up, and the back splash that Colten and Cody had spent days on was done. Did I see it? No. I just saw the mess. My daughter? My daughter did not notice that one single thing was out of the place. She just walked right up to her daddy exclaimed, "Daddy! I LOVE our new kitchen! I love the cupboards! I love the flowers! (in the back splash)" She then proceeded to grab me and force me over to look very closely at every flower on the tiles.

2. Nothing is better than playing games as a family. And we did it most nights, ALL summer.

3. Eat simple food. It always tastes good, takes less time to cook, and everybody is happy.

4. Anytime of day is appropriate for chocolate, and there is absolutely no reason to have a favorite candy "because all candy is good." :-)

5. Going to bed early is very overrated, unless you have to get up early, too.

6. The value of anything is truly the value that you assign it. This one also has a back story. We have decided to start having Rorie do some small chores around the house for an equally small allowance of 50 cents a week. While negotiating the amount of her allowance, it was impossible to get her to understand that quarters were worth more than pennies. All she wanted was pennies. Why? Because she likes the beautiful copper color. I explained to her that it would take 25 pennies to make one quarter, and even had her count it out, but she still prefers pennies.

7. Any object can be fun or entertaining. Heck, you don't even need an object, just an imagination.

8. Dressing comfortably is more important than dressing fashionably.

9. Never judge a person by their appearance, after all, all men are handsome and all women are beautiful (the same girl who judges a penny more beautiful than a quarter never bothers to judge another person, period).

10. Laughter is really contagious.

11. My house can be anything (from a distant world on another planet, to a large cave where we hide from and chase dragons) and so is wonderful, and my personal castle.

12. Space is not a necessity for happiness (physically or square footage wise).

13. You can dance to any kind of music anywhere, even if that music is something only you can hear in your own head.

14. Consequently, you can also make up a song about anything and sing it (loudly) anytime and anywhere.

15. A cuddle, kiss, and hug can make any day better. But, if all else fails, a good cry will always restart a bad day and make it a good one.

16. Learning is wonderful and should be done daily in fun ways (asking "why?" is always a good way to start this process).

17. Forgive always, and quickly.

18. Books with pictures are not only fun, but often beautiful. And, there are some cartoons that are just plain hilarious (see Ultimate Spiderman).

19. Cousins, aunts, uncles, grandparents, and any other family members, should be seen on a regular basis because they are fun and we love them.

20. And, finally, God is loving and amazing (after all, He gave us butterflies and hummingbirds).


One last thing to hold onto,  probably familiar to many from the movie Invictus:

Out of the night that covers me, 
Black as the pit from pole to pole, 
I thank whatever gods may be 
For my unconquerable soul. 
 
In the fell clutch of circumstance
I have not winced nor cried aloud. 
Under the bludgeonings of chance 
My head is bloody, but unbowed.


Beyond this place of wrath and tears 
Looms but the horror of the shade, 
And yet the menace of the years 
Finds and shall find me unafraid.

It matters not how strait the gate, 
How charged with punishments the scroll, 
I am the master of my fate: 
I am the captain of my soul. 

~William Ernest Henley

Day +84

I have not turned out to be the avid blogger I pictured myself being this summer. I thought it would be lot's of fun to be writing all the time, but it seems to be more of a chore to try and jazz up and/or sugar coat the life of a bone marrow transplant gal. I have consciously been putting off writing another blog because, in all honesty, I just have not felt up to writing a sunny post of life here in Utah. If it seems like my posts have gradually been growing less cheerful as time goes on, I suppose that is pretty accurate in terms of my attitude for the past little while. Oddly enough, I think I was actually more excited and optimistic at the beginning of the transplant, despite the threat of it ending in death, than I feel now in the last days of my time here (which is exactly 17 days and counting). Wow, this summer flew by!

My dreary mood has been exacerbated by the fact that my better half has officially moved out of Utah. He will be back for weekend visits, but life has resumed in Idaho for my love. Rorie and I have officially made it through our first week without him, and I can't wait to see him tomorrow! I feel left behind, and utterly useless. Life here has lost all of its appeal and adventure without my best friend to share it with. Now I feel lonely, and a bit scared of being in the city alone and of the possibility that--unlikely as it is--something will happen with the transplant and there won't be anyone here to help. Of course, Colten has loads of family all around me, and in a true emergency there would be help, but it is just not the same as having him around.

Without having another adult here to talk to, I have started to think--all the time. I am a dweller. I will dwell on problems and worries until they consume my every waking thought without someone around to distract me. So what have I come up with? Why the onset of sadness? Well, the transplant is over. Technically I am not out of the woods until three years out, but for all intensive purposes the transplant over. So, now I am waiting for the news. What news, you ask? The news that it did not work. The news that the cancer is still there, or, even better, growing again. The news that, yet again, another horrific treatment plan failed. I am so sick of finding out again and again that this tenacious cancer is still residing in me despite everything the doctors come up with. Yes, it is a very negative view, but there you have it.

I feel like I am on a downward spiral. My hair is still falling out in gobs and is about equally bald and still covered. My doctors seem amazed at this turn of events and can offer no real explanation other than assuming it is the Tacro, and the stress of the transplant in general, and trying to reassure me it will "most likely" start growing back in the next year or so. One of my doctors actually asked me to remove my hat so he could look at my hair because he seemed to think I was exaggerating. His face would have been priceless if it did not make me feel absolutely terrible about myself. Self-esteem? Self-confidence? Not so much. There are only so many times you can have people staring at your head in disgust before you wear a hat 24/7. I would shave it all off, but I am worried nothing will grow back. Truly, half the reason cancer is so horrible is because of your appearance while undergoing treatments. To feel sick and sore is one thing, but to feel bad AND look bad just adds insult to injury.

My greatest sadness is also my most selfish. I love every sister (blood, in-law, and adopted) I have more than chocolate (sweet cravings...). But, it seems like just about every one of them is pregnant and/or expecting a child in one way or another. Colten and I tried for years, but that dream got shattered pretty effectively with the extreme back and stomach pain requiring an emergency room visit, and ending with x-rays of cancer tumors everywhere. Funnily enough, my transplant doctors, after running endless tests, told me I could probably have children after this transplant (if it was successful) because my body seemed to have repaired itself and looked like a normal 25-year-old woman's body. I have clung to that hope, taking it as a sign that God has a plan, and that after this transplant works I can still have more children. But, lately, it has been weighing on me more and more. I have one smart, beautiful, sweet girl, and that is more than I ever deserved, and more than some couples end up with, I know. But it is the greatest desire of my heart. I am so happy for every lady in my life that has a little one on the way, but my happiness for them does not negate my own sense of loss.

So, this negative, balding, barren lass is not the best of company lately.

This week was probably the worst one I have had in terms of my emotional condition, but (as usual) fairly uneventful in terms of the actual transplant. Rorie has had a sore throat and runny nose all week that we assumed was her allergies, but over the past couple of days I have also developed a very sore throat, so we are hoping nothing worse happens at this point. I still do not have a fever, so no emergency as of yet. I had my first doctor's appointment without Colten on Wednesday, and it was an unpleasant experience. When we started this whole thing, the doctors told me (on TWO separate occasions) that I could go home around 100 days if there were no major complications. Well, there have been no major complications and there is this little thing called "giving notice" when you have a rental contract. We were required to give 60 days notice of our intent to vacate our apartment, and we stressed over having to make the decision only +40 days into the transplant, but we trusted things would be alright. And, as it turns out, they were. So, day +100 is right around the corner, and while nobody said anything about it, I assumed the doctors were on the same page as us. Turns out, not so much. I got the privilege of informing my doctors (who, I have decided, I cannot stand. This hospital is the worst place I have ever received treatment from in my entire life). My P.A. was the first person who I talked to about it, and she proceeded to bite my head off, and inform me that, "They were accustomed to telling patients when they could go home, not to patients telling them when they were leaving." Well, awesome. Glad I could set a precedent. She then told me that she would have to have a conference with the doctor, and I ended up waiting for over an hour (with a 4-year-old) to have a doctor come in and speak with me. 

While my doctor was not particularly friendly, she was better than the P.A. I laughed when she came in and said, "I was told you have a question about whether you can leave in the next couple of weeks." I smiled at her and said, "I am not asking, I am telling you. My rental contract ends on September 16th, and I will be going home." From there it was smoother sailing, until she brought up the dreaded bone marrow biopsy. I hate, hate, HATE bone marrow biopsies. After deep contemplation, and vivid memories of the previous two, I have decided I will never undergo one again as long as I live. So, I am supposed to be having one tomorrow, according to "protocol." She wanted to push it back two weeks until they do my +100 day workup "for my convenience." Since we were talking about MY convenience, I thought it might be a good time to mention I did not want to have another one done. I asked her why it was medically necessary, and she could not give me an answer. She suggested it was to make sure the bone marrow transplant worked, to which I countered that they had already performed a chimerism test that showed I was 90% my sister and proved that the transplant had, in fact, taken. She then said it was the only way to make sure the cancer had not progressed to my bone marrow. I responded that they had already checked that BEFORE the transplant, and there would be other signs (swollen lymph nodes, back pain, problems breathing, oh, wait...yep...had all those before...think I might notice) before it progressed that far. So, she continued to hedge, but basically ended up agreeing with me that it was not necessary, but more just standard practice (funny, it was not standard practice for my previous transplant). So, I told her I would strongly prefer not to do another one, and left it at that.

Today, I received an email from my coordinator (which is a fancy title that means she does absolutely nothing but set up schedules--without consulting patients about preferable times or days--and then parades around acting like she knows as much as the doctors or the other medical staff around her). Ladee is special lady. Both my sister and I got quite our fill of her just getting things set up pre-transplant, and I was truly hoping to avoid ever dealing with her post-transplant. Anyhow, she set up my schedule for the remainder of my time in Salt Lake, perfectly placing all my appointments on days that Colten cannot be here, and then brusquely ended the email with, "We will have to take your bone marrow because the study requires it. But it will be a bone marrow aspirate, not a biopsy." I love that I am the patient (customer), paying the hospital, and yet I get treated like the employee without an option. There is no medical reason for the bone marrow aspirate--which, by the way, is not a biopsy, but still requires drilling into my bone and sucking stuff out of it, which is the most painful part--but it is simply additional information for their study. I get that without medical studies treatments would be stagnant and never improve to the point of curing patients. I really do. Call me selfish, but I think I have done enough adding to medical studies at this point in my cancer journey and my life. I would just like to stop being poked and prodded, and never see a doctor again for anything other than broken bones, the flu, or all the other things that normal people go to doctors for. Needless to say, I wrote Ladee back and informed her that my doctor here, as well as my doctor back in Pocatello (yes, I actually called him for a second opinion because I want out of it THAT badly) said it was not a medical necessity, and therefore I would not be having another one. She has not responded yet, but I am not looking forward it. She lacks tact and basic respect for other human beings, so that should be a fun conversation.

"Ugh" is all I have to say about this week. I am sad to be leaving Utah, happy to be going home, worried about transplant aftermath and treatment, elated to be mostly done with this hospital, and basically conflicted in every way. I am just counting the hours until tomorrow when I get to see my amazing husband again. This summer, if nothing else, has given me the gift of time with him (and Rora) and I have really begun to see how much he does to take care of me every day. I am so blessed to have been given such an amazing partner in life. What guy marries a woman he knows is diagnosed with terminal cancer? Well, first of all, an eternally optimistic guy who thinks "everything will be fine" no matter what, and second of all, a straight up stud. I love, love, love my other half. :-)

Rorie Moment:  Rorie loves dresses, and would wear them every single day (and basically does) if we didn't make her wear something else once in a while. However, she has a problem with pulling them up, or playing like she is wearing pants, and always ends up showing the world her underwear. We solve the problem by putting shorts on underneath dresses, but she has a couple that are so long I occasionally let her go without any shorts. She was wearing one of these dresses, and Colten had been reminding her all day to keep her dress down. We were all sitting out in the living room where she was--typically--sprawled out on the couch with her dress up. Colten reminded her, "Rora! Put your dress down!" She sat up quick as a wink and pulled it down, then explained to Daddy with an innocent look on her face, "Daddy, my knees were just hot."

Something to hold on to: No inspiring quote this time around, but I saw this floating around Facebook and it seemed to come at just the right moment for me, perhaps it will touch someone else as well:

God,

I may not understand how everything will work out, but I trust you. I don't see a way, but I know you will make a way. I have faith that at this very moment you are touching hearts, opening doors, and lining up the right breaks and the right opportunities. Things may look dark and bleak now, but I believe that my dawn is coming.

Amen.

Day +58

Well, time for an update! The results from the skin biopsy were inconclusive (just my luck), and while it did not confirm that the rash was GVHD, it also did not rule it out. However, my P.A. said that my eosinophils (the things  in your blood that generally go up with GVHD and come down when it is treated) did go down with the treatment of my skin rash--which also is inconclusive because eosinophils go up when you are having an allergic reaction, and also go down when it is taken care of. So, basically, nobody knows. My P.A. felt pretty confident it probably was a tiny bit of GVHD, which is just perfect. :-) I'll take it! Thanks for the continued prayers and happy thoughts flowing my direction, they seem to be doing their jobs.

More great news: my Tacrolimus levels have finally started to level out, and with no severe GVHD we are moving to just one appointment a week now! I am starting to have pretty severe hair loss from the Tacrolimus, another fun little side effect of this lovely drug. Patients typically don't go completely bald, but I do have noticeable balding spots all around my head. I try to tell myself it is just hair, but I would be lying if I said it was not weighing on me. You never realize how important hair is until it starts to look really bad--or until you lose it completely. I have been bald on three separate occasions now, I think I have paid my dues and I am ready for it to start growing back! The doctor said in six months to a year it should start filling back in, but with my thyroid issues there is no telling how well it is really going to grow back. Ah well, as long as I am actually here to agonize over it, I guess I will be thankful for the agony! :-)

The end is definitely in sight. Colten will have to be back in Pocatello by the 26th of August to return to school, and Rora and I will be hanging out in Utah until the 16th of September (Day +101). I am a little nervous to drive around the big city without my hubby, I must confess. Some of my medications have required me not to drive, so Colten has become the unofficial chauffeur and I am not sure I remember how it's done! It will also be lonely and just rough in general after having almost three solid months together, so be thinking of us when that time rolls around. I am so excited to be over halfway through this ordeal, but also pretty terrified to head back to normal life. I realize that we have to go home eventually, and nothing really bad has happened at all, but it is comforting to know that specialists who deal with what I am going through every day are just a few minutes away, whereas in Pocatello they will be much, much further. As much as I disliked having to move to Utah and have not been really satisfied with our hospital experience here, it is still a safety net, and I feel like I am getting ready to step out of my comfort zone. With GVHD potentially cropping up until around three years out of the transplant and a very distressed immune system, it feels like a very big step. I am just concentrating on getting to the end and FINALLY getting this central line pulled out of my chest. I cannot wait! As soon as it heals, I am going swimming, and then taking a shower until there is no more hot water left in our house. :-)

In non-transplant related life, I had another run-in with school issues this week. I contacted my accounting adviser (Ken) to get some advice on books I could be reading and activities I could be doing to stay updated on the material until the spring, and I received a very surprising reply telling me that he would have the administration do special processing for me to attend this fall if I could get my application for the graduate program in and my GRE taken within the next couple weeks. I have a weird relationship with this instructor because he is kind of a hard guy to like--cold, short, unapproachable, the list goes on. Most students fail his classes, or wait for a different professor to teach the class, but I found his teaching style to be an enjoyable challenge. Teaching styles aside, Ken is basically the most intelligent person you could speak with about all things accounting, and is the one who gave me a shot to get in to the program even though my undergraduate degree was in English. He gave me a year to do all the prerequisites, and then said I could join the year-long graduate program. His opinion of me rose with each semester, I think, as did mine of him. I pulled off this past year with a 4.0, but I have never worked so hard or so much in my entire life--and I am barely getting to the graduate program.

The problem now is that I always feel like I have to prove to Ken (my professor) that he made the right decision letting me into the program. When he extended the offer to get me into the graduate program late, it was awesome to know that a professor actually cared and would go out on a limb to help me. Unfortunately, after talking it over with Colten, we decided I would have so much stress over the next two weeks trying to get my GRE taken and going through the application process--let alone the graduate program itself--that it would just not be a good idea. I have a tendency to disregard most advice given to me by doctors, I find most of it to be unnecessary, if not absolutely ludicrous. This will be the first time I actually listen, take a semester off, remove myself from stress as much as possible, and just let my body heal and my new immune system grow. But the decision did not come easily, and now I feel worse knowing that I was just bemoaning being unable to go back to school, and then, once given the opportunity, I made the decision myself to put off going after those dreams of mine. It makes it much worse, somehow. Add to that letting my professor down, being a wuss and taking a semester off after he offered to do whatever was needed to get me in, and I am pretty discouraged with the whole experience. My only hope is that this one time I do everything by the book, the treatment actually works. There are no other options after this, if it doesn't work, I don't know what we'll do. I have to give it the best possible chance of knocking my cancer out of the park.

It is almost amusing to me how much anxiety this accounting program has caused me in just one year. The amusing (and sad) thing is, I don't even like accounting. I actually hate it. But for some reason, I am very good at it (with a lot of hard work). I am mediocre in English--my first love--and regardless of my talent level, there was just not much I could do with the degree (some of my aunts who are English majors, incredibly successful, and personal heroes of mine might disagree, but I digress). I started considering other majors for my graduate degree that would better allow me to support my family financially, and settled on accounting. I will most likely not be the primary bread winner of our household, and may not even have to work once Colten completes his degree, but I still wonder if I will be miserable even working for just a few years. The careers I actually considered for myself over the years were to be a writer, a veterinarian, a helicopter pilot, a marine biologist, and I briefly flirted with being an interior decorator or civil engineer. Accounting never even made the list. Isn't it funny how life pulls you down so many paths that you often end up living a life you could never have even imagined? And how we fight so hard for, and worry so much about, things that really don't even matter to us? Things we don't even like? You'd think with a terminal diagnosis it would be easier to focus on the important things and gain a better perspective, but I think it is just human nature to be ridiculous--at least every now and then. ;-)    

Rora Moment: While eating lunch together, Rorie struck up a conversation about God (this happens more and more recently, which thrills me).
"Mommy, God made us, right?"
"Yes, He did."
"And He made the doggies, right?"
"Yes, He did, He made everything."
"And we have lives, right?"
"Yes, we do. God gave us life."
"And God made us happy, right?"
"Yes, Rorie, God did make us happy."
"Cause He only gave us good lives, right? Cause God only gives us good things, not bad things, cause He wants us to be happy, right?"
At which point I just smiled and stared at my daughter and her infinite wisdom.  

Something to live by (thank you, Bonna, for the post):  "Fear has two meanings: Forget Everything And Run, or, Face Everything And Rise. The choice is yours."

  

Day +46

Yes, my friends and family, it is actually day +46! In just four short days, half of this journey will be nothing but a memory. I have not written in some time now, almost a month, but little had changed in terms of the transplant and I am still not sure how much people really want to read about the daily life of a transplant patient--beyond the transplant itself, that is. But, today I have news! We have had our first serious sighting of graft versus host! Last week I started to develop a rash, but it was erratic and went from hardly visible to extremely prominent, then to literally nothing but weird prickling across my skin and random bouts of itchiness. It was mainly on my stomach, chest and low back, but then disappeared from that area and decided to redecorate the skin on my legs. We went into our clinic visit today hoping that the doctors would have a better idea of what was happening, and praying that it was GVHD (who prays for stuff like that? Cancer makes people crazy!).

As it turns out, GVHD rashes rarely show up on the legs, so that little phenomenon is left unexplained, but there was a slight rash still wrapping around my stomach onto my low back. My P.A. excitedly said, "This is a good thing!" She said the rash was very faint, but had the typical pattern and look of GVHD. The bad news: we had to have a skin biopsy to be able to tell for certain (hopefully, sometimes the biopsies just come back "unknown"). Now, I know many of you out there have probably had biopsies of varying types and think I am just crazy, but bone marrow biopsies HURT. They don't feel unpleasant or uncomfortable, they make you want to rip out of your own skin because your bone hurts so much you do not want to be attached to the body containing it anymore. I have heard different accounts from other bone marrow biopsy survivors who say that "they are not that bad," but number one they are lying, and number two they are lying. Anyhow, when I hear the word "biopsy" not followed by "general anesthesia" I kind of freak out (as an aside, I am required to have one more bone marrow biopsy on day +85, PRAYERS would be so appreciated that day!). So, my P.A. (Char) went to grab the necessary tools and we had ourselves a little skin biopsy. Admittedly, it was nothing like the bone marrow, but it still was not pleasant. Colten said it was pretty cool to see, though, and now I just have one more battle scar. We will have the results pretty quickly if it comes back odd or alarming, but otherwise we will get further information this coming Monday at our next clinic visit. I am incredibly hopeful; all signs point towards GVHD, including a constant rise in my eosinophils (I am not even certain what they really are, the doctors just keep mentioning that a rise in their count typically confirms GVHD).

All of this got me thinking today about how lucky I have been. It is funny how you can be lucky (or blessed) and yet so unlucky at the same time. I cannot seem to get rid of this cancer once and for all, but every treatment I have ever had has gone well, with so few hiccups that they are almost negligible. My first chemotherapy I ever had was a an experimental chemo that was expected to be much harsher than other chemos, making patients much sicker than other drugs, but with the intent of having the treatment last for a shorter amount of time. My chemotherapy was a grand total of six months, where other patients with my disease using the standard chemotherapy had treatment for anywhere from 9 months to over a year. Well, it did not bother me a bit. I had one hard day, and as long as I stayed off my feet and in my house (me and my dad found that one out the hard way when we went into Walmart and I passed out in the middle of the store) it was no big deal. I stayed in school, kept up my grades, and did everything else that I wanted to do. My other chemotherapies were similar in their effects, and my initial bone marrow transplant was over and done with no problems (and, unfortunately, no real benefits).

This transplant was absolutely terrifying for me. The first doctor we met with basically told me that I would die, and if I did not die I would wish I had because I would be sick and miserable for years and years with so many health issues that they could not predict or control. She advised me to seek "any other alternative" before taking on a bone marrow transplant of this kind. Well, Miss Merry Optimistic was talking to a woman who had no other alternatives, a gorgeous baby girl, and an amazing husband that both need her around. That awesome pep-talk was definitely not what I needed to hear with no other real choice, and so I proceeded into this fully believing my life was virtually over, but knowing that I had to try and fight. And here I am, once again. My transplant thus far has been, medically, a great transplant. I asked that doctor, if it went perfectly, what would it be like (seeking something to shoot for)? She answered something like, "You would be in and out in 100 days with no hospitalizations or severe graft host disease, the donor's cells would create a graft versus lymphoma effect, and we could just check in once a year for three years, at which point you would go your own way, cancer free." Well lady, here it is. I don't know about the graft versus lymphoma part yet, but everything else is going according to plan.

My counts never completely bottomed out, meaning I was never officially neutropenic, and one of my many doctors happily told me recently that studies have shown a high correlation between counts not completely dropping out and the transplants having a higher success rate. It looks like I am getting just a mild case of GVHD, which is exactly what should happen in a perfect transplant as it means that Jenny's cells recognize my body is different, therefore making it more likely that they will attack the cancer. They are not, however, trying to kill my body. It is a delicate line, but a very important one. Also, we found out that I am now 90% Jenny (in terms of bone marrow, anyway!), so the transplant did take, despite all of my concerns that my counts were not dropping and there was no issues, which could indicate a failed transplant. As I said, a perfect transplant. And I am the type of person who always seems to jinx things by talking about it prematurely, but my treatment history has made me so confident that I know I can write this now, not quite half-way through, and the last half will run just as smoothly. List this as another thing I can't comprehend about God and His infinite wisdom. He won't just abolish the cancer, but every treatment I receive goes so smoothly there has to be another hand involved. One far beyond mine, or the doctors'. To what purpose? Only time will tell. In the mean time, I choose to be grateful and trust to a higher plan. I have met quite a few other patients now, and most of them have had a pretty smooth road--for the most part--which is due mostly to the huge improvements modern medicine has made in this field. Unfortunately, I have also met patients who are not doing so well, between the medications and the transplant itself, and my heart goes out to them.

Well, that's life in the transplant lane. The past month since I have written has been full of family and fun. My brother-in-law, Cody, and his wife, Emma (two of my very favorite people), came to visit for my birthday and stayed for a few days. It was wonderful! They also took us to Colten's uncle's home here in Utah, and I got to meet more of his amazing family that I have yet to get to know. Great food, great company, and great kiddos for Rorie to run around with. We went back to Idaho for the 4th of July (our Happy 5-Year  Anniversary!) and watched the fireworks with my sisters and their families (also some of my favorite people in the world) from a nice, uncrowded hotel balcony (thank you to my parents for making that happen). My family also surprised me by ripping out our old kitchen and putting in a much-needed new one. They worked their tails off for two days straight to get it done, and I cannot wait to get back to our trailer and use it! The weekend after the 4th, we piled in with my mom and headed to Colorado to celebrate my little nephew, Christian's, birthday. I thought I would have to miss it this year, and my heart was joyful when I found out I would be well enough to go. I was there when both my sister's babies were born and I love them like my own, so I have to be there for birthdays. :-) A few days later, my dad dropped Rorie off at our house (we left her with my in-laws for a few days to take a break from driving), and then this past weekend Jen and Shane came to stay and hang out for a few days of games, movies, food, and fun. My love tank (as we call it around here) is very full, and I am so thankful for our family on both sides. 

Lately, I feel so normal that I wonder what we are doing here. My kidneys are still acting up now and then, and my blood pressure is having a ball raising the roof, but there are no huge concerns. The Salt Lake area is pretty awesome, it grows on me more every day. So much so, that when we got back to Idaho the first time it was almost disappointing. Typical, right? First you hate it, then you love it. :-) I enjoy the culture here, and the fact that there is always so much happening. You can get any kind of food you want (at almost any time of day), including vegetarian cuisine that I prefer, there are health stores with supplements and organic food everywhere, the buildings and architecture are amazing, the mountains are beautiful--if it were not so blooming hot all the time I might be willing to call it home. ;-) It will be a big change going back to quiet little Chubbuck, and with an entire semester off from school I think I might go crazy back in such a tiny town. But, in the end, I think every place grows on me, and feels like home, because of the people I live with every day, not because of the location. Hmmm...I think that is it for now. I am going to try and write more often, regardless of whether I have transplant news, and I think I might start writing about some of the people that I see regularly at the hospital. There are some real characters there, that place could almost be a soap opera--but I'll leave that out of my writing. ;-) I could also go on quite a rant about all the issues we have had with this hospital, but there are some pretty fun individuals I would like to get down in writing just for my own memory. If nothing else, they should be entertaining--they are at the hospital anyway!

Rorie Moment:  I was not actually there for this Rorie Moment, but was told about it via my mother-in-law, Laurie. While Laurie had Rorie for a few days, Rorie apparently informed her that Mommy and Daddy needed to get married. Laurie laughed and said that we already had, and Rorie said, "No, I did not see them dance." Laurie assured her we had been married, and Rorie further informed her we needed to get married again.  Why? So that she could see us dance, of course! ;-)

And, because it has been so long since I last wrote, and my daughter is adorable, there is a bonus Rorie Moment:  After playing with Rorie in her room, I told her that it was time to get ready for bed. She pulled her typical antics, laughing and shaking her head. When she realized I was serious, she looked me straight in the eyes and said, "Mommy, I disagree with you." It was so grown-up and out of the blue that I burst into laughter. I have no idea where she heard it, but she definitely understands how to use it. Heaven help us!

And, something to remember:  Happiness cannot be traveled to, owned, worn, or consumed. Happiness is the spiritual experience of living every minute with love, grace, and gratitude.

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."