Wednesday, August 24, 2011


It has been a rough few weeks. My body just doesn't seem to understand that I have things to do, and that I don't have time for it's antics.

I spent the majority of last weekend bent over the toilet or a bowl, not even able to keep 7up down, but trying to sip it nonetheless. It's a new thing for me to be in charge of an entire household, to be the sole person who does the cooking, cleaning, shopping, and general upkeep. And it is also a new thing to be MARRIED and not be able to retreat to a hideout to avoid being seen like a green mutant who can't even talk with out getting sick. I have never been one to enjoy company when I'm sick, I don't like to call for help, or ask for prayers (although I am getting better at that) and I don't like to seem helpless. All of those walls go out the window when you are married, because he sees me the way I am all of the time. It was a big bruise to the ego when my hard working husband had to do the dishes, laundry and cooking ( or in his case the microwaving ;-) ) and an even bigger bruise that I had to ask him to do it. I am not cut out for feeling useless or helpless, and yet here he was exhausted from a 65 hour work week, cleaning up after my mess.

It was hard to go through, but on this side of it, it was also quite comforting to experience first hand the difference between a marriage and a relationship. While those fears still linger that all of this sick talk is overwhelming him, the fear of him leaving me to be sick alone is completely gone. I remember being in a hospital room staring at my phone waiting for a phone call from my boyfriend at the time, that never came. Ignored text messages, and phone calls were pretty devastating in that situation. Knowing that I will never have to go through that again is really something to be said. No more writing mean bitter break up songs to sing behind whoever's back!

While I wouldn't trade moving to the tundra with my husband for anything in the world, I am so so excited for this trip home next week. This is the longest I have gone without being back so I am ready to waltz into my favorite place yelling "how y'all doin?!" and having a hundred people smile back at me, ready to give me a hug. There is something so wonderful about support from people who truly get me. Those people are the kind of friends that I am never worried about offending, because I know they will take whatever I say in the way that I meant for it to be taken. They love me for who I am and laugh at my faults, rather than condemn me for them. That kind of vulnerability is rare and I didn't realize how much I needed that until I left it. It will be a year next month that I have been gone from Amarillo and it has yet to get easier. I am so looking forward to dancing, sushi, starbucks, and mexican food. Dear God mexican food. Hopefully I don't come back ten pounds heavier, but its a strong possibility.

I really am looking forward to spending time with my best friends, laughing, catching up, and just being there with them. I am tired of watching things happen over facebook and feeling like a bad friend for being all the way up here! It will be replenishing to spend an entire week in a place where I feel so loved.

On another subject, I am seriously considering recording a lot more of my original songs. I guess I feel like if something happens in the transplant, maybe I lose my vocal chords, or I don't come out of it, I would regret people not hearing them... or not leaving behind my legacy. So I am going to be working hard on building up the courage to share them, and even if they suck, try not to bruise my ego too much ;-)

PS On the health note, please keep me in your prayers that I stay well for this trip. Nothing puts a damper on vacation like being sick, and I really need this time to just have fun. Yeehawwwww!

Sunday, August 21, 2011

Catch up

Well I am definitely new to this whole blogging thing, so I thought I would start by catching whoever is taking the time to fumble through this up on just where I am in my life. This is gonna be long. Bear with me.

I was married in June to the best man I have ever met, and we are currently living in Kemmerer, WY until around the end of the year when this job is complete. We won't really know for sure where we will be going after that, because each time they say they are sending us somewhere, it changes. So we will know when they tell us where to send the Uhaul :-) Bryce is a Safety Manager for Flint Energy, and is currently working on an H2S plant in Shute Creek, WY.

We have two of the best dogs a person has ever had, ever. Hurley Theodore (2) and Bitsy Mae (4 months) They truly are a big part of keeping me sane up here, as Bryce's work load consistantly has him working 7 days a week ten + hours a day. Its a good thing they can't talk and aren't able to tell the tales of my ridiculous antics day in and day out.

Rus and Shelly (the parents) are still in Rangely CO, dad is preaching, and mom is the medical records director for the district hospital in town. Kemmerer is only about 200 miles from Rangely, so we have been blessed with this job to be so close to them.

As for the main reason of this blog, here is the past oh, 10 years in a nut shell.

The Neutropenia was pretty managable through middle school and highschool, with a consistant at least one week out of school spat a semester. Counts would drop, fever would spike, and I would land in the hematology/oncology clinic at Cook Childrens medical center with a round of broad spectrum antibiodics streaming through my poorly populated veins. Generally missing a week of school would follow with a truancy letter, a mound of missed homework, ridicule from whatever extra curricular activity (ies) I had missed, and a big giant heap of "she doesn't look sick" remarks. Thank God highschool is over.

When I got to college, my health kind of took a downward slope. Freshman year I was in the hospital with a fever probably every two or three months. After that it wasn't uncommon for me to be in with a viral infection every month. It made it difficult to hold any type of job, and hard to committ to almost anything. I spent the duration of a two month relationship in the hospital every three weeks for a week at a time. Pretty infuriating if you ask me. Each time I was hospitalized, we noticed that it took longer and longer, with higher and higher doses of Neupogen to get my ANC (absolute neutrophil count) to come up to even a managable number. There was quite a few speculations on what was causing my frequent hospitalizations, and what was making it so hard for my counts to come up.

Before we got married, Bryce and I were living in Amarillo, TX. When Bryce got the job offer to move to Kemmerer, I looked for work and ended up moving in with my parents in Rangely to be closer to where Bryce was before we were able to live together after the wedding. The time I spent in Rangely was extremely helpful because no matter how hard my momma worked to keep me well, she found first hand how difficult it truly was to keep me out of the hospital. I was lucky enough to find an amazing doctor in Grand Junction CO, who has been extremely proactive in managing and researching my disease, as I am the first Chronic Neutropenic patient she has had.

When marriage came on the forefront, my questions and concerns changed from "how can I stay out of the hospital?"  to "Will it ever be possible for me to start a family?". Since Dr. Wettstein is a mother and a wife too, she has been so compassionate towards those concerns. She immediately jumped into research, and it was a big possibility that a splenectomy would do the trick. So I underwent a series of tests, a spleen and liver scan, antibody tests, and a bunch of other things. When we got the spleen scan back, the results were that while a normal spleen is the length of 11 or 12 cm mine was registering as 19 cm. It seemed promising, but after more research it turned out that the spleen wasn't my problem after all.

Dr. Wettstein decided that the only real way for me to become healthy enough to live a "normal life"
(meaning ability to hold a job, ability to take care of a child without germ problems etc) was to undergo a bone marrow transplant. It is a big possibility that the transplant can take my chances of child bearing down to zero, so Dr. Wettstein told us that if we wanted to have kids we needed to do it before the transplant. It changed from can I get a surgery to cure me so that I can start a family (splenectomy) to have a family first so that way I can get healthy.

After talking and praying about it with Bryce, we came to the decision that bringing a child into the world with a mama that can hardly stay well herself, and then putting a small child through the trauma of her mother being in a bone marrow transplant is really not what we want to do.

So here we are, starting the long process of tests and doctors appointments with various transplant specialists, fertility specialists, and my regular hematologist, testing for my siblings as to who would be the best donor and we have to begin to prepare mentally, physically, and financially as well. This will get interesting.