well, hello there 2011...

Let's see if I can sum up what has happened in the past month and a half since I've posted [because, um wow, it's 1. been awhile and 2. lots has happened..]:

- They found me a perfect 10 out of 10 matched donor

- Despite being extremely immunosuppressed, they released me from the hospital until transplant

- I went to countless appointments in preparation for my transplant [pre-irradiation measurements, CT scans, MRI, etc]

- Aforementioned donor was found to be medically ineligible

- They discovered pockets/abcesseses in my liver and re-admitted me to the hospital 3 weeks after I was initially released

- I had a liver biopsy and they switched up my meds

- I am tentatively due for release from the hospital today

So where do I stand now?

from Etsy

They've been in touch with a 9-of-10 donor and we're waiting to hear back as to whether or not she will go through with it. She asked for a day to think about her decision, so we should know maybe late today or tomorrow if she's interested and have a new transplant date scheduled. 

I still have to live in bubble-ish conditions while I'm out of the hospital because my immune system is still so low, but it has been nice to be out. 

For those of you who would like to continue following up with more detailed updates about me and what is going on, you're more than welcome to check out my CaringBridge site here. I'll do my best to update briefly here [and I've been reading/commenting sporadically with all of you!] during treatment, but the CaringBridge site is where my mom will update if I'm not feeling up to it! :)

And, because it cannot be said enough, I cannot tell you how much I've appreciated your thoughts and prayers and care packages throughout all of this. I guess this little 2 week relapse in the hospital is just a reminder of how long of a haul this process is going to be. 

definitely not at all what I expected

As this year comes to a close, I've spent a good deal of time reflecting [from my hospital bed] about the things I expected to be doing and what has actually happened. 

I mentioned awhile back [pre-hospital] that I had some things lined up in the coming weeks that I was super excited about. The hubs and I went to see OVO in Atlanta and it was fabulous. 

I was so excited to take my parents over Thanksgiving weekend to see the Fantasy in Lights at Callaway Gardens. My husband and I had plans to go to the Nutcracker ballet in early December. Needless to say, neither of those things happened [but luckily the good folks at Groupon and Ticketmaster were kind enough to issue me full refunds considering my situation]. 

I was so excited to celebrate my first real Christmas with my husband. Have our first real tree, set up our decorations and host a holiday party for friends [I'm eternally thankful for our faux-Christmas last year, but it involved setting up a friend's tree, not our own]. 

It all seems so trivial in the grand scheme of things, but it is all stuff that I was really looking forward to. I've joked with my husband that when I hopefully get out of here, I will celebrate Christmas. I don't care if it is July.

Instead of planning for New Year's parties, I'm waiting for the doctors to tell me if/when I'll have a transplant. 

Instead of planning for the move that we have coming up in March [yes, we're moving again, lol], I'm sitting back knowing that I will likely have no part in any of it as I will hopefully be recovering from my transplant. 

When I focus on all of these things, it's easy to get into the sad, frustrated, dear-God-why-me?! attitude. Despite having been regularly upbeat about my situation, it has still been a roller coaster and I'd be lying if it didn't suck, and suck big time. Being a type-A person, it is really hard to go from utter control of my life to having little control over what is going on. 

I do my best to focus on the positive though, because really, there isn't any other way. The procedures and risks and potential side-effects scare the beejezus out of me, but that doesn't mean they go away. I also try to play an active role in my care -- I ask plenty of questions and share my opinion [respectfully, of course] with my nurses and doctors. 

When I find it hard to focus on the positive, I need not look very far. My mom has turned my bathroom door into a giant Christmas tree of cards that I've received. I have had friends and family visit, care packages sent from all over, books from my wishlist sent since I can't receive flowers, and the support has simply blown me away. Because of that, it is easy for me to see past the shitty situation I find myself in and realize I am so, so incredibly lucky. 

Thank you all for your continued love, prayers, thoughts and support -- you all never cease to amaze me in your generosity. I wish you all a happy and healthy[!] new year. 

Finally some good news!

I preface the good news with some other news first.

Having to have a bone marrow transplant is a huge, long battle.

Chemo. Radiation. Transplant. Potential rejection. Lots of drugs and medication. Long hospital stays. Potential of not being able to have my own biological children. [We're looking at Lupron to help protect my ovaries through chemo.. fingers crossed!]

You know, easy stuff. Hah. ;)

The doctors also informed me last week that I do not have aplastic anemia. I have acquired Trisomy 8 -- which causes MDS [myelodysplastic syndrome]. MDS used to be more commonly known as "pre-leukemia" so that is an added potential complicating factor. Luckily, Trisomy 8 is only a "moderate" risk factor for leukemia, so they're hoping to be able to get me to transplant before that switch could even occur. 

Luckily, it is an acquired genetic disorder -- i.e. somewhere in my lifetime, my chromosomes messed up and have compounded into this condition. If I get through all of this and am able to bear children, I will not pass this disorder onto my kids because it is not an inherited disorder. Yay! :)

I've also started and subsequently completed the big part of my immunosuppression -- the ATG infusions. Basically, the ATG attacks my T-cells [suppressing my white blood counts, yuck] with the hopes of allowing my marrow to do some work of it's own and reduce the number of transfusions that I need between now and transplant. I maintain the suppression with a twice-daily dose of cyclosporin. Keep your fingers crossed that I respond because the fewer transfusions I need, the better! :) 

As for the GOOD NEWS?!

My doctors informed me that having run my HLA typing in the National Marrow Donor Registry, I have 106 preliminary matches!

They've sent the information to the national people, and they're going to track down my best, best matches. At that point, they get in touch with them for blood work and to see if they're available for donation. Needless to say, I burst into tears when they told me the news. :) 

As I said before, it's going to be a long road, but this was a big positive that I definitely needed!

on war and health

When my husband came home from Afghanistan last year [wow, I cannot believe he's been home a few days shy of a year already] I asked him how he thought he had changed. One of the first things he mentioned was that he had new perspective on what really mattered in life -- if you aren't bleeding to death, losing limbs or otherwise dying -- things were ok. 

From time to time, the attitude infuriated me. I would be upset about something and I would want him to be riled up about it too and he just wouldn't. I would want him to join me in my frustration and/or commiserate with me, but instead he would push me towards a solution. If I wasn't ready to take action towards a solution -- read: I wanted to throw myself a bit of a pity party -- I shouldn't expect him to come to my rescue. 

I've grown accustomed to it, and in all reality it has made me much more action-oriented and active in working out a solution. It has made me more independent and stronger, but it is still a tough pill to swallow from time to time. 

Now that I've been in the hospital for three weeks as of tomorrow night, it is all the more hammered home. I've done my best to not take things for granted, but this experience has been humbling in more ways than one.

I have had to face my own mortality -- last Friday I was diagnosed with Aplastic Anemia. It is an autoimmune disorder where my own cells are attacking my bone marrow and have caused it to fail. A normal female of my age has marrow with 75% cellularity. Mine is 2%. 

If I hadn't come into the hospital on November 19th, I would have died -- according to the nurses either by brain hemorrhage or stroke. 

If I do not get a bone marrow transplant, I will eventually die from complications of the disease. 

My husband has been my rock throughout all of this, especially since this falls into his bleeding/loss of limbs/life category! :) He has reminded me that while this all is super scary, people die crossing the street every day and you aren't always lucky enough to be able to fix that. 

I have an option -- a fix -- transplant. 

While it will involve months of hospitalization and treatment, there is an 85% success rate [as long as they find a donor match]. I try my best to focus on that number, and not the fact that there is a 15% chance of death throughout the chemotherapy/transplant/graft-vs-host disease process. 

The outpouring of support I've received has been tremendous and overwhelming [in a positive way!] and I feel so fortunate to have so many people in different areas of my life reaching out and helping me to stay positive through all of this. 

I leave you all with one request tonight [aside from thoughts and prayers.. man, I'm getting greedy!] -- to potentially save my life or someone else's -- by becoming a bone marrow donor through the National Marrow Donor Program at BeTheMatch.org. If you have any questions about the process [I've had my marrow sampled three times now, woo], please feel free to check out the site or email me at notallthosewhowander [at] gmail [dot] com. 

As always, thank you for all of your love and support. 

clubbin' at all of the coolest hospitals

Well, dear blog friends, I have some news about why I've been absent for a bit.. I'm in the hospital. Thank goodness they have free interwebz because it makes checking in on all of you a little easier! :) [yes, I wrote my holiday card post from right here in my remote controlled bed!]

So, remember how I posted a week or two ago about how I have been feeling miserable?

How I needed to stop being miserable and start being an adult?

How I thought it was my birth control?

Well... it wasn't. 

On Tuesday 11/16, the hubs and I had dinner together and had just sat down to relax on the couch and watch some mindless tv and I started noticing that I had spots in my vision. You know when you have a picture taken with flash and you get the little bright spots from where the flash was when you close your eyes? Yes. I was having that. After an hour, they didn't go away [I wanted to make sure I didn't just look at a light or something and couldn't remember!] I told my husband I wanted to go to the ER. With the daily headaches I had experienced I had this paranoid thought of "ohmygod what if my brain is swelling, pressing on my optic nerve and causing these spots?!"

It's a good thing that I let my brain run free with the worst-case-scenario option because it got me to the hospital.

I came in, the got me into the ER. They took my blood and a urine sample. They sent me for a CT scan. The CT was normal. They sent me for a chest X-ray. Fine. They came back and took another vial of blood. 

A little bit later the PA on staff came in and told me that the reason they took a second vial of blood was because they thought there was no way the first results could be accurate. Indeed they were.

My platelet count was 4[thousand]. Normal is 120-150[thousand].

My hemoglobin was 5. Normal is 10-12.

My white blood count was 1. Normal is at least 5. Cancer patients are at 0.

She informed me that I had the second lowest platelet count she had ever seen in her medical career. After she left, I managed to crack a joke to my husband that "well, at least she looks young. Maybe her medical career hasn't been that long." :) hahah. I crack myself up.

They admitted me to the hospital and they gave me a blood transfusion and platelets [for you medical types, 3 units of blood and 6 units of platelets]. They put me in ICU and everyone was fantastic. I even had a nifty airplane-ish toilet seat that popped out from underneath the sink. Granted, with my platelets so low [and me turning into Mrs. Roboto being hooked up to so many machines] I had to sign away any privacy when I needed to go to the bathroom. 

On Wednesday, they transferred me over to the local medical center because they have a hematologist here. They're run more panels of bloodwork and have aspirated/cored my bone marrow. They gave me morphine for it and honestly, it wasn't that bad. Just a lot of pressure, which is what I expected. The doctor doing it gave me a play-by-play [I desperately need to know what they're doing to not freak out] and even let me see the core of bone marrow after he had sealed it up for analysis. The hubs was able to stay and hold my hand through all of it as well. 

the result is numerous hospital armbands [important info blurred for my protection :)]

The results thus far is as follows: lupus, bone marrow cancer and leukemia have all been ruled out [yay!]

They still don't know what is causing my bone marrow to be suppressed/have little production. They think I may have had a viral infection [think flu/cold, or the fact that I had Shingles in August, sigh] as indicators in my blood show that I am not currently infected, but recently fought something off. The only really bad thing left on the table is a small-but-cannot-yet-be-ruled-out possibility of myelodysplastic syndrome [MDS], which can lead to leukemia. Those results will come with the final bone marrow results as MDS is linked to a chromosomal abnormality. As I said before the doctors are leaning towards the likelihood of a viral infection though.

They don't know when they will release me because my white counts are so low that they are afraid that if I leave I would get sick and not have the defenses to fix/defend myself. My husband and mother [she came up from Florida on Wednesday, bless her heart] and all of the nurses/doctors/etc have to wear surgical masks when they are in the room with me. 

Kate and my brother/his girlfriend have been by to visit, and those who haven't been able to visit [either because of distance, sickness themselves, or whatever] have been amazingly supportive. I've even had a couple of skype dates with a few of my nearest and dearests. 

I've received flowers from several friends [even though I'm not allowed to have them in the room because of the bacteria they may harbor, lol!] but they are beautiful -- the nurse took a picture of them on her phone for me. :)

Oh! and get this -- I'm on the best diet ever -- again, because of the bacteria, etc -- I'm not allowed to have any fresh/raw fruits and veggies! [Seriously though, I could kill for a salad by now!]

I'm not sure what they have scheduled for me for today, last I heard I'm getting another infusion of IVIG, or commonly known as an IV of immunoglobulin. I had one on Friday and then I had more platelets yesterday. 

I'm becoming bionic... one of my two original lines [top -- the other one in my left hand was removed after the PICC line was put in] and the lower one [bicep region] is the PICC line. The purple catheter coming out of my arm runs up my vein in my arm, up towards my shoulder and down to my superior vena cava.

I think that's it for now -- I realize I wrote a novel. I will post more when I know more and hopefully I'll be out of here by Thanksgiving! :)

It's that time of year for holiday cards!

Last year was the first year that I actually got my act together and send out Christmas cards. I'm excited to do it all again this year!

I found out from some fabulous fellow bloggers that Shutterfly is offering bloggers 50 free photo cards. I have always loved Shutterfly and their photo products [I've ordered photo books, photos, cards, etc from them!] and I know these will be just as amazing. So as many of you have already done, I have picked my favorite!

I love it and it can be found here

I think I love it so much because it has a fun flair to it, and the photo I plan on using is definitely a very goofy photo of my husband and I. It actually was a photo from our post-deployment Christmas celebration last year and it cracks me up every time I look at it. 

Can't wait to show off the final product in a few weeks when I mail them all out!

Thanksgiving plans!

This year will be the first Thanksgiving that the hubs and I have hosted together. I am really excited and not terribly nervous. My parents are coming up for it, so there really isn't a huge amount of pressure. On top of that, I've helped my mom out with several of the side dishes over the years, so I think the only thing to worry about is the turkey itself! :)

For our menu, we're opting for many of the typical things:

Turkey

Stuffing

Mashed potatoes

Sweet potatoes with marshmallows on top

French-cut green beans

Glazed carrots

Broccoli casserole

Salad

Sourdough rolls and/or cheesy braided-bread wreath
[edited to add -- of all things, I cannot believe I forgot DESSERT!] Apple pie

I made the cheesy braided-bread wreath on Saturday for the football fiesta we went to and it was a success. After it came out of the oven, the hubby said that 1. our house smelled like Subway [the delish baked bread smell] and 2. that the bread looked "damn good." :) 

We're planning on brining our turkey and have Williams-Sonoma Apple + Spices turkey brine to help us out with the task. I think the brining is the part of all of this that I am most nervous about, but I know that it will be nothing short of delicious!  

I can't complain

Today I enjoyed a little froyo with a few fabulous Army wives. We got to talking about the Army life and all that it throws our way -- moves, deployments, training... the list goes on and on -- and I had a chance to reminisce a bit about how good we have it. 

I went to the doctor today to get all of my birth control madness straightened out, and yet again, the Army-provided doctor was excellent. 

I've made amazing friends and have had the chance to meet people from all over. We have different views and opinions, but that is part of why I love them.

We've had the chance to live in two different states that I never would have chosen at first glance. 

Next spring, we're headed to whereabouts unknown. 

That's definitely a positive and a negative. Positive because it brings new adventures and new friends. Negative in that we don't know what unit the hubs is headed to and what their deployment rotation looks like.

My mom asked me earlier this year when he could/would deploy next. Because it looks like his hopes/dreams for his Army career may not happen, it could be as soon as next spring/early summer. We don't know yet.

And I'm ok with that.

As I told the girls this afternoon, I'm kind of a bitch when it comes to whining about training [I try to only hold myself to that standard in order to not be a completely unsympathetic friend!]. I won't lie -- his spot being cold in our bed for weeks while he was at JRTC didn't exactly make me smile -- but he wasn't getting shot at. He wasn't getting blown up. For that reason alone, I have no reason to bitch. 

We have friends who have been on two, and four, and five deployments. 

That's months years spent worrying. 

We have friends who have been injured and will have to live with the aftereffects for years, if not an entire lifetime.

We have friends who have given the ultimate sacrifice. 

With all of that in mind, I cannot complain about this life. 

There will always be ups and downs -- it's a part of the choice we have made to live this life. With Veteran's Day just a few days away, I'm all the more appreciative of how lucky we've been -- the places that we've gone, the friends we've met, the memories we've made, and those who we will never forget. 

the one where I realize I am an adult

I'd be lying if I said that I haven't been in a funk for the past week or two. I've completely let my routine go to shambles and instead I've spent a little too much time pouting. Usually when something is amiss, I'm quick [or my husband is quick!] in deciphering what it is, what the cause is and thus, the solution. I'm generally a happy-go-lucky person and that is NOT what I would describe myself as for the past couple of weeks.

I think the reason I've been in this funk is that I can't entirely put my finger on what the cause of this is. Part of me screams "it is the new birth control" because I have been bruising like crazy, feeling sluggish and having headaches and/or migraines every other day. That's enough to make me want to crawl in bed and stay there.

I'm also back up to the heaviest I've ever been, and then some per the scale yesterday morning. Ouch. My husband and I are very real with each other about this sort of thing -- if I start pouting about my weight, he reminds me of the obvious answers -- time at the gym and nutritious food. He doesn't make me feel bad about it, but he definitely doesn't let me wallow in it either. It has been hard to be motivated to go to the gym though, with the aforementioned headaches and sluggishness though. 

I realize though that I'm an adult. I need to make changes instead of whining because whining doesn't fix anything. I need to talk to my doctor about switching birth control, or even going off of it altogether, which was a discussion the hubs and I had over the weekend in a fit of my own frustration. I will get a monthly pass for the gym because I know that if I spend the money on it, I will use it. 

On top of all of that, I have a lot of things that I'm excited about coming up in the next month and a half, so I need to start acting like it! :) 

In honor of the marathon I'm NOT running..

.. I give you the highly cathartic "Marathon" by Simon Rich. I read this last week while in DC and it made me feel better about not running the Marine Corps Marathon this morning.

---

Marathon

by Simon Rich, Free-Range Chickens

In 490 BC, a Greek messenger named Pheidippides ran twenty-six miles, from Marathon to Athens, to bring the senate news of a battle. He died from exhaustion, but his memory lives on thanks to the "marathon," a twenty-six-mile footrace named in his honor. I thought it would be neat to bring Pheidippides to a modern-day marathon and talk to him about his awesome legacy.

ME: So, Pheidippides: What was it like to run the first "marathon"?

PHEIDIPPIDES: It was the worst experience of my life.

ME: How did it come about?

PHEIDIPPIDES: My general gave the order. I begged him, "Please, don't make me do this." But he hardened his heart and told me, "You must." And so I ran the distance, and it caused my death.

ME: How did you feel when you finally reached your destination?

PHEIDIPPIDES: I was already on the brink of deathwhen I entered the senate hall. I could actually feel my life slipping away. So I recited my simple message, and then, with my final breath, I prayed to the gods that no human being, be he Greek or Persian, would ever again have to experience so horrible an ordeal.

ME: Hey, here come the runners! Wooooh!

PHEIDIPPIDES: Who ae these people? Where are they going?

ME: From one end of New York to the other. It's a twenty-six-mile distance. Sound familiar?

PHEIDIPPIDES: What message do they carry... and to whom?

ME: Oh, they're not messengers.

PHEIDIPPIDES: But then.. who has forced them to do this?

ME: No one. It's like, you know, a way of testing yourself.

PHEIDIPPIDES: But surely, a general or a king has said to them, "You must do this. Do this or you will be killed."

ME: No, they just signed up. Hey, look at that old guy with the beard! Pretty inspiring, huh? Still shuffling around after all these years.

PHEIDIPPIDES: We must rescue that man. We must save his life.

ME: Oh, he knows what he's doing. He probably runs this thing every year.

PHEIDIPPIDES: Is he... under a curse?

ME: No.