Monday, November 21, 2011

God's got my back.

There is nothing more annoying to me than someone coming up to me and claiming that with prayer they know God can heal me, then praying for me, laying hands on me, then feeling disappointed or even accusational of my lack of belief therefore causing the prayer to not work. Now before you go calling me a villain for saying something like this, hear me out. It's definitely not annoying that people care enough about me to pray over me, and it's awesome that they have such faith to believe that God can heal me. What's annoying is that people somehow think that God is so small minded that if I am not healed right there, BOOM on the spot, God has said no. People have said, God is keeping you sick for a reason, and while I don't necessarily believe that God is saying, SaraBeth! You must suffer because if you don't your future will be ALL jacked up! Because I don't think that's how this God of ours works, I do think is that while people are praying for my health, the whole time God IS saying, "I'm already on it". Here's why: From the beginning of all this, by beginning I mean my diagnosis, I believe that this is all coming together so intricately that no person could ever have planned it this perfect. I met with Dr. Patrick Cobb this week (my doctor who will be taking care of my while in Billings, MT) And yet again I was smacked in the face by a big fat "I got this" sign from God. To bring you up to date on the whole "Gods in control" thing I'm ranting about, here are some key points. 1) The fact that my parents made the decision to move to Fort Worth Texas, was extremely huge in getting me diagnosed, as the hippie doctors in Missoula, mt told me I had Colorado tick fever and it was nothing to worry about. 2) going to the hematology/oncology clinic the EXACT DAY that Dr. Boxer, the head doctor over the Severe Chronic Neutropenia registry at the time, was visiting the hospital. What could have taken days or weeks to happen, happened in one afternoon, allowing me to start neupogen (the injection used to treat my disease selling for 300-500$ a shot) free of cost because I was so quickly added to the study of Chronic Neutropenia. 3) Bryce landing the job in Kemmerer, WY, thus prompting my move to be closer to him and moving in with my parents in Rangely, CO, bringing me to Grand Junction CO for a hematologist. 4) This hematologist setting me up with the one transplantist that comes up from Denver, who happened to do his fellowship with the SAME doctor who diagnosed me. 5) the doctor asks me to come to Denver for a CT and possible PET scan, and days later, Bryce gets an email telling him that he gets to take an OSHA certification class in DENVER for four days in January, meaning he would get to be with me since he technically wouldn't be taking off of work. 6) Dr. Cobb, my new doctor, transplanted kids in San Antonio Texas with the same doctor who did my first bone marrow aspiration when I was ten. 7) Dr. Cobb's wife's best friend has a daughter who is my age that also has Severe Chronic Neutropenia. In case you don't realize how nuts that is, let me throw some numbers at you: there is approximately one case of my kind of disease in every 1,000,000 people. I have only one other time met people with my disease and that was at the convention for chronic Neutropenia. This doctor was not only well studied in my disease, but he had read my medical history before even meeting me as a person. It is rare to come accross a doctor who has actually taken a peek into my massive file of medical history before meeting me. This guy cares about his patients. He then proceeded to give me his cell phone number in case I get sick because the answering service is not very good at the cancer center. This means even more to me because I have spent countless nights sick as a dog trying to get ahold of whatever doctor that is on call to tell me to go to the hospital. I realize we have a long way to go before I am healthy, but all of this coming together just adds to my faith that one day, one very soon day, I will know what it's like to live a normal, sickness free life. Moral of the story? Don't always assume that because things aren't working like you think they should, God has said no. God sees the big picture, a picture too big for our minds to see even if we tried. I am a blessed woman.

Monday, October 24, 2011

Sorry, I know it's been awhile, and we still don't have internet hooked up here to I am updating this from my phone. Please excuse any typos for the time being ;-P Bryce and I went to see 50/50 last week, because I had heard from so many friends how good a movie it is. Don't get me wrong, it is a good movie, but just a little too uncomfortable for my tastes. If you are one of those people who gets all offended and grumpy when someone tells you things that happen in a movie that you haven't seen, skip the next paragraph. We will meet up when I explain about the doctor. The movie starts with an excessively vulgar scene talking about girls with Seth Rogan. Guess I Should expect excessive vulgarities being that it is a Seth Rogan film. Anyway blah blah the main character is diagnosed with cancer and the movie is about the process of treatment and coping and what not. The main character (Adam) has this live in girlfriend that offers to take care of him and be there for him, but you quickly find out that she had no idea as to what she signed up for. She takes him to the hospital for his first infusion, but refuses to go in with him because she doesn't want "bad vibes". When he's done with an infusion she doesn't answer her phone or come pick him up until two hours after he's done. Ultimately it turns out that she's cheating on him and blah blah they break up. It's not that I hated this writing, because it's extremely realistic to what goes on with someone who is sick at a young age. Almost TOO realistic if you ask me. It just brought up too many memories of being in the hospital and being completely avoided by whoever I was with at the time because no one wants to be with a girl who spends her free time in hospitals. Somehow, I have found that man, but reliving heartbreaks in the movie theater kinda sucks. The movie all in all is really well written when it comes to showing how the process works and feels of finding out you are sick and trying to get better. I am glad that this movie puts it publicly out there for people who have never been sick a day in their lives. Maybe it will give them some insight to not be so insensitive. I don't know. I just should have gone to see somethin else that wouldnt make me cringe every five seconds. OKAY. Time for some doctor updates. We met with the transplantist who comes to Grand Junction from Denver twice a month. He was friendly and wears a bow tie that matches his socks, so he passes my preliminary tests :-) He started off the conversation by informing me that he did his fellowship with Dr. Dale, the head doctor over the Severe Chronic Neutropenia registry. This alone is huge because usually every doctor that I've had has to learn about my disease and I am generally their first chronic neutropenia patient. This doctor has been studying my disease with the same doctors who diagnosed me. If that's not proof that God is involved in this situation, you're nuts. Anywho, Dr. Bruenvand told us that he has had a patient in the past who had my disease, with the same symptoms, and when they did some extensions testing, they found a low yielding lymphoma in her spleen. It's a long shot, but I will be travelling to Denver to get a cat scan and a pet scan if we can justify it to the insurance company. This is our last avenue To go down before taking the steps to the transplant. This doctor wants to exhaust every road we have before starting the transplant process because once you start it you can't undo it. He said his goal for me is to live a happy, healthy, long life. This may not sound like anything special to you, but for the past fourteen years, I have been seen by doctors who are just fine with me living a difficult life as long as I am alive for a few more years. This doctor wants to work with us for me to be healthy, which is a big change from my past conservative doctors. We sent off my HLA typings for testing, along with the kit to test my sister and brother's typings. We will see where this lands us. In case you haven't been completely convinced of God's presence in this process, the Colorado Blood Cancer Institute where my doctor is from, travels to BILLINGS MONTANA once a month to see patients. Of all the places in the world Bryce's company could have sent him, they sent him to the same place where my doctor already has an oncology clinic. We are feeling really good about this decision we will be making because we have such an amazing Team of doctors working with us and we all share the same goal. Thanks for all of your prayers and I will let you know how the scans go!

Saturday, September 24, 2011

wahhhhh I'm sore.

Well, this has been a good week in the event that I have gotten really serious about getting in physical shape. I have always been relatively slender, and in okay shape, but I decided on Monday that I am going to get serious about getting as healthy as I possibly can before going into the transplant. From everything I have read, the healthier your body is going into the transplant, the easier it is to come out of it. Maybe if I really tone my muscles now, then it won't be quite as difficult to be able to regain strength after the transplant. It is really easy to lose a lot of strength when you spend your time with chemo infusions or TBI (total body irradiation), then the weeks that follow with getting sick and trying to keep any form of nourishment down. From what I gather, even standing is difficult with this strong of medicine. My plan is to be as toned as I possibly can be so that the long amount of time spent in bed won't be quite so hard on my body. I hope that after the transplant I am able to recover quickly and maybe being in top physical shape will give me the ability to get my life back when I am healthy some day.

Wednesday was my first workout with Audrey, our pastor's wife who is a certified physical trainer. It was definitely hard on my body, (I'm gonna blame the altitude for my ego's sake) but it was so informative in the most effective ways to work out my body. I have also cut out drinking any kind of carbonation from my diet, and I am seriously looking into doing a shakeology cleanse to really give my body a boost. This is by far the worst idea I have ever had, but I am going to stick to it until I have decided that it is the best idea I have ever had. I am determined to come out of this procedure, and I am going to do everything in my power to make sure that happens. I took a before picture... but I won't post it until I have an after picture so that way you can't judge my pudge :-)

Saturday, September 17, 2011

Wow, I'm boring.

I know it's been awhile since my last post, I went to my beloved Texas for a week, and then promptly came home to an upper respiratory infection :-) Lucky me!

Amarillo was a blast, as always. Bryce was informed two days before the weekend that he was going to have the following week off of work, meaning that he would be able to also go to Texas! Unfortunately I had already purchased my plane tickets to leave the following Thursday, and Bryce wanted to leave Sunday. So he went ahead and drove down, while I stayed behind to work until Thursday. It was only four days apart from each other, but it was so hard to not see him even if it was only four days! I was a little worried about going down, since my blood count was a little low, but I managed to stay well until the day I got home lol. While it was great seeing my friends, spending time with my grandparents and best friend, it was evident how different my life and my priorities are from just a year ago. I was ecstatic to come home to my wonderful husband (who had cleaned the whole house for me) and my sweet dogs. Wyoming isn't so bad after all if it has my family in it! I am a blessed woman, and sometimes leaving things behind for a week is just the reminder I need. I wouldn't move back to Amarillo for anything, if my family wasn't going to be there with me.

Funny story from my Texas adventure: I had to renew my drivers license while I was down there with my new name on it, so after almost a week of procrastination, I went on Wednesday to the DMV to await the long lines of hell. I got there 15 minutes before they opened, hoping to avoid the swarms of people and germs that they carry, only to find that I was not the only one with that idea. After waiting until 8:30 (45 minutes) I finally make it to the hipo that gives you the paperwork and the number you are in line to get your stuff done. After running my license, he proceeds to escort me to a back room and tell me that I am going to jail because there is a warrant out for my arrest. Since my LAST invalid warrant escapade, I have been carrying around the paperwork clearing my name, JUST IN CASE the incompetency of Randall/Potter county continues. Sure enough, here we are. So I hand the guy the paperwork, and he is convinced that this paperwork clears nothing, and is trying to get me to sign a waiver to "extradite" me to Potter county. It's a 10 minute drive. Really? After coaxing the bitter highway patrol man into at least investigating my paper work, he tells me that he will check but he is 99.9% sure that the warrant is valid because "we just don't put warrants into the system that are incorrect". An hour later, after all my make up streamed off because I am crying, freaking out that I am going to jail, he comes in and says "guess you are in the .1 percent. Lets get you back in line!". I then wait four more hours to finally get my dang license renewed. GAY.

Living in Wyoming, I am a five hour drive from my doctor at the cancer center in Grand Junction, CO, so when I get sick, its a little more complicated to receive treatment than it used to be when it was just a short drive to the hospital. I called Dr. Wettstien on day three of being sick, when I spiked a low grade temperature. Generally doctors don't worry about low grades, unless you are a Neutropenic ;-) Then, a 99.7 degree fever can land you in isolation with lots of yummy antibiotics running through your veins. Dr. Wettstien called in a few prescriptions to the local Kemmerer pharmacy, and I started taking them immediately. It's really nice having a doctor who doesn't find it necessary to make me drive 300 miles just to get an antibiotic prescription and be sent on my way. Five days later, I am fever free and aside from a sporadically runny nose and an occasional cough, I am feeling much better.

In the midst of all of this, Dr. Wettstien was able to get my appointment made with the Transplant team, so on October 20, I will get a lot more details on what the next few years are going to look like. Bryce has already taken off work for that day, meaning we will drive down the night before, and drive back after the appointment on Thursday. It will be a quick trip, but so worth it since Bryce gets to actually come! I think after the last appointment it was hard for him because he only got to hear everything second hand, and sometimes hearing it from a doctor is a lot more comforting than worrying that things are getting lost in translation. It means a lot to have a husband who is genuinely concerned about my health (on most days anyway, sometimes I just want to tell him to quit worrying!) He is strong for me sometimes, and its a different dynamic that I could definitely get used to.

On a stupid note, I went to return our latest Red box rental ("Just Go With It" hilarious) and instead grabbed the wrong DVD (New Moon :-( ) and returned it to the machine. Bryce wouldn't stop laughing at me but I am really really bummed because I love my Twilight movies. Don't judge me. But if you ever find yourself in the same predicament, the nice lady named "Tiandria" would be glad to take your name and address to return your movie to you. I feel dumb.

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.