Day 2

Throughout all the snowing before Christmas, I was feeling very jealous that I was the only person in my family not getting to play in the snow. And so, when yesterday morning we started seeing the snowflakes fall, I (for one) was quite excited. It snowed, and snowed, and snowed - literally ALL DAY! It was spectacular. This was the view our our window


My run was glorious, however, people found my outfit a little funny :)

I do have to say, it's pretty nice that we are across the street from the hospital, so we don't need to drive anywhere. My mom and Brandy both had a check-up yesterday, so we could just walk across the street. Of course my mom also insisted on us going out to eat yesterday, because her counts are just high enough to allow it. She figured that when she goes in today for her check-up her counts will be so low that she won't be allowed to be in public, so yesterday was the last hurrah, as it were.

Today the streets are cleared and it's not snowing anymore, but we do have quite a bit of snow on the ground...
Today is another check-up for mom and then tomorrow and Tuesday start the big gun chemo treatment. 12 hours each day - sounds horrible! Dad is coming down for a visit today and my Aunt is headed back up to her farm. Brandy is going to update her blog today with a more detailed story on being kicked in the butt by a horse. I figure she earned those scars and should get to explain them, not I. I will say it looks rough! Although she said it doesn't hurt too much more than the day after our marathon :)

Let it Snow

it's SNOWING!!!!!

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16 hours

From the time Brandy and I walked across the street yesterday to start 'the business' until the time I dropped her off at the front door and parked the car - 16 hours. That people, is a LOT of waiting. I felt like a little pathetic being as tired as I was last night after doing nothing but waiting all day, but I was exhausted!

But, let's start at the beginning...actually we'll back up to a little before the beginning. We arrived Thursday night and moved our small army into the patient housing, along with just a few things...yeah, not so few

We had a mask fashion show - my aunt is wearing 'the puppy dog' mask, my mom is wearing the 'darth vadar' and I'm wearing the 'platypus' . Pretty sweet

After that we headed to dinner, where they were very sweet to set us in our own room so my mom could take her mask off and eat comfortably. We came back and set up the beds...that was a bit of an experience. We thought that we had a pull out bed in addition to the normal bed. As it turned out, the pull out bed, was this weird thing where you pulled out the arm, not the bed, and then laid the pillows back down. Once we figured this out, we realized that only one person could sleep on that, which meant one person got to sleep on the recliner. My aunt found a little cubby hole in the sofa and decided if one of us was smaller we could sleep inside it and the other one on top :)

In the end, Brandy took the sofa, my aunt and mom took the bed, and I got the recliner. I honestly can sleep anywhere and thought this was not going to be an issue...that, was a mistake. I would say I got a quality 25 minutes sleep when I finally found a semi-comfortable position at about 4am :) My mom said at one point she got up to go to the bathroom and I was curled in a ball on the seat of the recliner...yeah, not comfortable. My aunt got the recliner last night, however she having slept on a number of chairs taking care of horses all night long knew the comfy spot that I didn't find until 4am and started out there. :)

So, the alarm (well actually the 3 alarms) went off at 5am, Brandy and I jumped up, threw on some clothes, brushed our teeth and walked across the street. Brandy headed into pre-op as soon as we arrived and I took a seat in the waiting room for what would be a very long day.

The updates throughout the day were not very exciting, and were pretty much covered with the pictures I sent from the phone. In short, I sat, Brandy puked, my mom ate, and my aunt watched a whole lot of Storm Chasers and Cash Cab. The one 'exciting' moment was when my mom got 'the riggers'. She is probably the only patient they have ever had who was excited she got the riggers. She is happy that she can now explain what it feels like. :) Thankfully because my aunt and mom are nurses they knew the textbook description of it and caught it early, so they let the nurses know early on. Riggers is a reaction your body has when you put blood of a different type into it. My mom is an O and my sister is a B, so they took out as many red blood cells as possible, but you can never take them all out. This is my mom post-riggers, she insisted on my aunt taking a picture, but my aunt being a sensible human being waited until after the action when she was sleeping off the drugs.
Notice, riggers or not my mom didn't really skip a beat, by the end of the day she was doing dishes...
My mom and aunt headed back to the room around 6:00, and I waited on...and waited, and waited and waited. And finally I headed back to get something to eat, took the car back so I could drive Brandy back, and waited again. Finally, at about 8:00 they called me back, I helped Brandy get dressed, the nurse took our her IVs and we were allowed to leave. We think that Brandy's body didn't like the morphine they gave her during surgery and it took 5 meds for nausea until they found one that worked.

So, the aftermath. Brandy on the couch...
my mom on the recliner...(obviously feeling fine)
This morning everyone is feeling much better. Brandy said she does feel like she was kicked in the butt by a horse, but with help from my aunt she has a little tylenol in her, and took a shower with a plastic wrapped butt and feels human again she says.

The caretakers, thanks to some coffee, and a good night sleep are feeling pretty good :)

Right now, we have the window open to watch the snow outside, Brandy is doing some crosswords, mom and Aunt Dona are about to head over for her check-up, and I'm going to go take a quick run in the snow. A) my swollen feet and tired of sitting legs need some exercise and B) I haven't seen snow in years, so why not? Happy Recovery everyone!

Here it is...

In case you were wondering, this is what a bone marrow transplant looks like. I don't think i had envisioned it as red.

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Do you know what you're doing?

This was Brandy's question to the anesthesiologist this morning. He was quite quick to answer back, 'oh sure, I looked it up on google this morning'. Now granted, what she was asking was whether they were doing an epidural or general anesthesia, but it didn't really come out quite right. Thankfully we are at this hospital, which continues to amaze me with it's service and we had a doctor who understood she was nervous and asking questions in a weird way.

I've been in impressed with Hopkins ever since my mom said one of the guys who takes her bone marrow for her tests had the procedure done on him with no anesthesia so that he would know what it felt like - that, people is dedication to your job. As my mom explains it, she doesn't know how anyone who hasn't given birth could do it without anesthesia - the anesthesia was late a few times and my mom went ahead with the procedure and she said she has reverted to the breathing technique while they do it. Now, Brandy is getting about 100 of those same things done...hence the anesthesia. She is totally freaked out by needles, and so was not feeling the epidural option, but everyone kept telling her it was up to the anesthesiologist. So, this morning, she was anxious to meet him or her, and inform them of her concerns. Apparently she didn't think through exactly how she might inform them, and thus asked if he knew what he was doing :) When she explained what she meant he said 'oh, good, because the general anesthesia YouTube video was much clearer than the epidural one'.It was pretty funny.

You may be wondering how I know this. It is because (again) Hopkins is great, and I was allowed to go into the pre-op room while she was waiting once they got her changed and her IV in her arm. So we sat there chatting and then met the doctors and then our friend gave Brandy 'the one drink he knows how to make' as he phrased it - in essence a hopped up form of Valium apparently, and then sent me on my way. I think what has impressed me most about this hospital is that they make an effort to make you feel like you are the only patient they have. Which in a time of stress, it a very nice thing to feel even when you know it's not true. Actually, it's a very nice thing to feel because you know it's not true. And they make an effort to be human. As the anesthesiologist was asking Brandy all these questions about medical history, he threw in 'do you answer anything other than no' as a question. A nice touch to show he wasn't just getting through his list to do.

So, Brandy is officially knocked out (with general anesthesia as requested) and my mom was supposed to arrive at IPOP (I love the name of that wing) at 8am, so we are officially on the way. My Aunt Dona has been making the drive down to the doctor with my mom for 6 years now - ever since the first trip with the previous cancer. So I think she certainly deserves to be there for 'the business'. Depending on how Brandy feels we may head over 'and watch her cells drip into my mom' as the nurse called it. Otherwise we'll head back to the patient housing. My Aunt told Brandy she won't need pain meds, it will just feel like a horse kicked her in the butt (which my Aunt actually knows a lot about because she owns a horse farm, and has been kicked in the butt by a horse a number of times) - however, Brandy is not sure she wants to feel like a horse kicked her in the butt, so we will see :)

Stay tuned...

We're Here!

Here we go!!!

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Last Supper

the last supper, as it were. My Aunt Dona and mom call themselves 'fat head, skinny head', we decided the mask accented her skinny head.

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Delicious

lunch at hopkins, getting ready for radiation. I need this cafeteria at my work ~ it's awesome

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Upon Arrival

Well, I'm here. Actually I'm really here - right now I'm at Hopkins. My mom is checking into radiology to get a sticker on her tag (the tag she doesn't like to wear because it makes her 'look like a patient'...yeah, she also doesn't like wearing her mask because she feels like a duck billed platypus) and Brandy is getting blood taken for the umpteenth time. I'll tell you this - if all chemo patients were my mom, the cancer wing would be the place to hang out. Brandy said yesterday the nurse asked her how she was feeling to which she responded 'Great!', to which the nurse said 'ahhh, really? so no nausea?' - 'nothing I can't manage with a little ginger water with lemon' says the woman with more energy than anyone in the room. Ahhh, I hope those genes were passed onto me is all I gotta say (the energy genes, not the cancer ones) :)

So, upon arrival last night I got a taste of what my dad is in for for the next week while we are down here. The house is going to be something else - he may have gotten the bad end of the deal. First, Nikole had just had a little freak out before I arrived. I yelled up, 'Nikki, can I come up to say hi?' to which she quickly screamed NO!!! At least there were no 4 letter words thrown in there - Brandy had gotten all of them before I arrived. Ok, moving on.

I had dinner. My mom had made it (of course) while Brandy had dealt with the altercation upstairs. This is the package that had arrived the day before with air filters...

I mean honestly, it doesn't take a genius to see you lost whatever was in that package and probably don't need to deliver it - really, the box was open like that. The Dudley man has been super anxious - poor boy. Dina probably doesn't assist him...
My dad and Kaylinn apparently do. He slept in my room last night - I think because he wanted to be near his sister, not because he wanted to be near me.
this is the sad face he's been given this week before we arrived...
Now we are onto the best part. The 'isolation room'. My parent's bedroom is going to be where my mom stays once we get back from Hopkins. The problem is the air flow is weird in the old farm house where we live so my dad had to make a few adjustments to keep the dogs out, while letting the air flow through. So here is the improvised door he made...you have to slide the door out, put the hinge down, then slide the door back through while telling the dogs to stay back, then slide the door back out, slide the hinge back out and put the door back...it's a bit hard to explain, just suffice to say it's something.

this is why we chose this room - the fire and a TV borrowed from my grandparents house makes for a perfect little getaway
granted you haven't gotten away frm much since the air has to flow through - you can't really block it off completely. The nice thing is, with all you have to go through to get in and out, you can just hand stuff out the 'window'
here is my mom 'in isolation'...she's really not an isolation kinda person :)


Out of the 'isolation room' is where the real action is, however. Tootsie and Kaylinn are not so much friends. We knew that Kaylinn would make Dudley feel better, but were a little concerned about the Kaylinn-Tootsie interaction. You pretty much run interference to make sure no one gets too excited. Excitement leads to fun and the 'fun police' as we call them don't like the other one having any fun. Tootsie pretty much stalks Kaylinn around for the first 24 hours, this morning she was a little better, but last night...not so much.
So, between a possible screaming teenager, anxiety dog, the 'fun police', the isolation room door, and containing the cancer patient who keep trying to do things she's not supposed to do, it was quite an evening. Well, Brandy and I should be going in for her last appointment soon, so I'll head out. Mom's full body radiation is at 1:00 and then we'll check into the patient housing and if everyone is feeling good apparently we are going out to eat when my aunt gets here (guess who instigated this one...the one who has to wear a mask into the restaurant). I'll leave you with the Toots who is missing her mom terribly I'm sure (when she's not stalking Kaylinn)...

Sometimes...

While I generally do not support stops on a trip that are not tied to gas fill up, sometimes it's worth it... I mean starbucks are few and far between on 95...

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Ready or Not

Ready or not - here it comes. 'The business' is upon us. I've handed over the reins for all projects I'm in the midst of at work, I've packed up everything I can think of possibly needing (and then some), and I'm ready to drive 10 hours tomorrow to arrive just in time for final testing and then the transplant...as they say, here goes nothing.

Well...

Well, I've had a headache all day - the kind where I start pulling out all the stops - and yet nothing. In fact, nothing until about an hour ago when it finally decided to go away. Here's the thing though, now that it's gone I feel great, and hence awake, and hence not ready for bed. Too bad it's bedtime. That is possibly the only thing more annoying than having a headache all day - the headache going away just before it's time to go to bed. Stupid head.

On other topics, the wedding dress party was spectacular. Totally hilarious and well worth tying my dress together for...

Sandor said this is why I have to tie my dress together..what does he know?

from the front you can't tell at all!

our most creative brides - the runaway bride, the red neck bride and the gypsy bride

and you can never have brides without bridesmaids...preferably in many colors...and possibly wearing a veil
watch out for those veils though, especially if you are next to Ashley!

Brandy just wanted to wear a veil since she didn't at her wedding, we felt the purple boa added a lot to the look
the official party foul of the evening...and the biggest wedding dress foul there is - grape juice on the dress...yes, yes I realize I shouldn't have even served grape juice, but I took what I had in the house and that was it...perhaps I will not make that decision again. It was, however, possibly worth the look the lady at the cleaners gave me when she said 'I hope it was after the ceremony' and I said 'oh, I wasn't getting married'...nice.

all in all, quite a fun little evening

however - you do need to watch out for brides fighting over the center spot in the picture :)

Wealth

I read an awesome and thought provoking quote today:

The real measure of our wealth is how much we'd be worth if we lost all our money.
-John Henry Jowett

Warning: Real Life Ahead

Last night and this morning I got a little insight into how to explain how I'm feeling, so I figured I may as well post it here once and for all rather that explain it twenty times to different people and cry every time I explain it. So here goes...

I feel totally useless. And feeling useless makes me feel unneeded. And feeling unneeded makes me feel unwanted. And it doesn't matter if I know it's not logical, and I know it's not real, and I know I am wanted and needed and useful. It's still how I feel, and it's ok that I feel that way.

My mom (this is where I get this from, by the way) always wants to make everyone else's life manageable and as easy as possible, but there is nothing she can do to make this transplant easier for anyone. If I'm in SC I'm going to feel the same way as if I'm in PA, except I'll feel more useless, so why not be in PA? In many ways, me helping her through this is how I'm help myself through it. And so, in a few weeks I'm going to go to PA to do nothing, but at least I'll be doing nothing nearby rather than working and pretending everything is normal. And it's ok that I need to do that.

I know that in the end it will all be ok. Really, I do. That is a point God brought me to last time we went through the cancer battle. But that doesn't make it any faster to walk through the times when it's not ok. And I appreciate everyone saying that it will be ok. I appreciate their intentions, and I appreciate there is really nothing else to say. But, sometimes I just want someone to say 'man, that sucks!'... and leave it at that. Because it does. For some reason, I need someone to understand how I'm feeling and not try to help me change how I'm feeling. And I believe that is why you can best help someone go through something once you've been through it. Not because you know how to help them get through it. Because you know how to NOT help them get through it.

So, I feel angry that we have to do this, but blessed that we are able to. I feel unsure of the future, but I feel certain it's under control. I feel peace that passes understanding, but I wish I knew the outcome. And I feel ready for this month, but wish I didn't need to be. None of it makes sense. It just is what it is (in the words of my sister).

Last night I went to a wake for a sister of a friend of mine. When Cynthia called to let me know the time and place she said 'this isn't like a white person's wake'. And let me tell you, I'm glad it wasn't. The last funeral I went to was so formal and ritualistic, it was almost as if you weren't allowed to feel what you were feeling. This was real. They sang praises to the God who is the only one that understands why it happened, and then they told stories about the LIFE of the person they were there to celebrate. At least 4 people said a few words and then sang a song. And the whole choir joined them in singing. People didn't read scripted words, they spoke from their heart. It didn't always make sense why what they remembered was important to them, but that was what was important so it didn't matter. It really was beautiful. And it showed me something very important about life. What is real doesn't need explanation - you can feel it.

I think our society focuses too much on how we think things SHOULD be rather than how they ARE. Life isn't perfect, and many times it's isn't pretty, but it's beautiful. Sometimes you have to look for it, but it's always there. A wake is not an enjoyable experience, but it can be beautiful. My mom's transplant is not a great situation, but it can have beautiful results. My pains and frustrations are not enjoyable, but when all the sudden I get a glimpse of a truth God's been trying to teach me for years, it's worth it. It's not comfortable or convenient, but it sure is beautiful. It's not how I wanted to learn it, and it's not what I thought I should be learning, but it's what I needed to learn and it's how I needed to learn it. Now, I won't forget it. And I've stopped trying to figure out how I SHOULD feel and what I SHOULD learn and I've just accepted this is how I DO feel and what I AM learning. You may have already figured this out, but for me I'm still in the process so cut me some slack :)

So, in conclusion...life really is beautiful, it just sucks sometimes. And in all these things we are more than conquerors through him who loved us. For I am convinced that neither death nor life; neither angels, nor demons, neither the present nor the future, nor any powers; neither height, nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Jesus Christ our Lord (Romans 8:37-39). We wouldn't have to be conquerors if there was nothing to conquer, so you better believe there will be. But the promise is not just that we will conquer it, we will be MORE than conquerors. That means we will walk away having not just won the battle, but having gained more than we walked into it with.

Initial Thoughts of the Day

Some initial thoughts from my day so far...

as I was scraping ice off my windshield:
thought #1 - I thought I lived in the south
thought #2 - I remember when my dad used to do this for me
thought #3 - I need a house with a garage so I don't have to do this

as I was logging into my computer:
thought #1 - why does the battery on my wireless mouse die so quickly?
thought #2 - where can I find a AA battery at 8:15 on a Monday morning?

as I was walking down the hall after first meeting of the day:
thought #1 - I wish all meetings took 20 minutes
thought #2 - why is my office noticeably colder than Phil's?
thought #3 - where is my quilt?

Happy Monday!

Weekend Notes

Well, my body has done it again. I go the entire year without getting sick and pretty much every single January, right after our deductible resets and you have to pay the full amount for doctors visits, I get sick. I'm not feeling horrible, but definitely not well. I almost didn't go (in fact yesterday I tried to ride it out) but when I woke up this morning with my ears and jaw hurting from the head congestion I decided to go if for nothing else to get something to deal with the symptoms. As I suspected, it was a cold, so they couldn't do anything for it, but they did give me stuff for my head. One good thing about having still not gotten around to taking the tree down was that I had something nice to look at while I laid around on the couch all day long.

Kaylinn has also been entertaining me while I've been laying around for two days. Brandy and John got her this enormous bone for Christmas. It's literally as long as she is. For a few days she would sniff it, but not really mess with it much. And then suddenly she decided she was interested in it, and became very concerned someone else may be interested in it. So she now carries it into the bedroom when we go to bed, then back out to the living room when we wake up. I guess carrying is a bit of an exaggeration, with it's size she had to drag it behind her. If she is laying on the couch she drags it over to the couch with her, if she lays on her bed she drags it over to her bed with her. It's quite entertaining.


So, if nothing else I've got entertainment going for me :)