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.