Building Solid Foundations

In case anyone was interested we decided on an organization for donations in memory of my Mom. Three years ago she went on a mission trip to Ghana with a group called Building Solid Foundations.
Anyone who spent anytime with her knows all about the trip because she had such an incredible time she talked about it for months. So, we decided that it would be a great group to direct people to for donations. You can read about them on their website, but the short of it is it was started by a couple (Grace and Seth Quartey) from Ghana who want to help improve the lives of those living in rural Ghana. They focus on access to clean drinking water (the blue part of the logo), increasing agricultural production to reduce hunger and increase employment (green part of the logo), basic primary and secondary education including supplying curriculum and computer labs (orange part of the logo that kinda looks like a book), and providing adequate healthcare and access to heath services that are not available otherwise (red cross of logo). My mom was part of the healthcare team and helped in recovery for the hundreds of surgeries they performed in the week she was there.

Donations can be sent to 963 E. Market St. York, PA 17403 and if you'd like to call and speak to the adorable Grace you can do that too - I just talked to her this morning :) Up next is Brandy and I finishing the scrapbook we were working on for my mom and writing the eulogy...those two things will probably involve a lot more tears than this one, but will also involve a lot of laughs because we were trained by the best when it comes to looking your fear in the face and laughing at it! We were all laughing in the hospital about the day my Mom got the news that she had leukemia - she looked at my Aunt Dona and said, 'well, we might as well go have a nice lunch downtown, there is nothing we can do about it right now'. And so they did.

Some Thoughts from the First Week

In some ways it was easier than I thought it would be. Life does in fact go on, and quite normally really. The new normal as I decided to call it. I went to work, did my job, came home to my house, talked to my dad, went to bed - all things that normally happen, happened just the same as they always did. In a lot of ways it was easier than I thought it might be to be normal.

In other ways it wasn't. I drove to work wanting to call my mom the entire time. I wanted to write a post that she could read, or tell her a funny story, or hear a funny story from her to tell others, or just hear her answer the phone. I wanted the old normal back.

I didn't cry as much as I thought I might. I didn't feel angry at God, or angry at the world, or angry at all really. I laughed, a lot actually. I talked and told stories and didn't cry doing it. I played games, and ate dinners with people, and had fun doing it. Genuine fun, not make myself enjoy something fun.

I noticed everything in terms of what I was doing last week. And I noticed 8:15 on Thursday. I was driving to work, wishing I could call her. My baby sister turned 18 that day. And I sang her happy birthday while coworkers sat in the car with me. I don't really consider myself a good singer, but I didn't really care. And it made me thing of singing mom Amazing Grace while my aunt put lotion on her back. I didn't consider myself any better a singer last week, but she wanted that song and I didn't really care if I was a good singer then either.

I've stopped wanting to talk to people as much. Anyone who cares to hear the stories has heard them. Anyone who doesn't care to hear them generally won't look me in the eye when they see me. Not that it bothers me specifically, I can understand, I'm pretty sure I've done the same thing in the past. I probably won't in the future. Random chit chat just doesn't seem interesting and my stories about my mom are old news, so I find myself in a conversation just ready to be done the conversation. I find it interesting how some people feel really sorry for me and I really don't feel like they should, and other people seem to act like nothing happened or I shouldn't have any strange feelings at all, and I'm really feel like I should, and there are very few people in between those extremes. Hence, not really feeling like talking to people.

I find the cyclic nature of grief interesting. It makes me want to read about grief, and then I realize how clinical I'm being about it and try to convince myself that I need to experience it, not read about it. I'll probably still read about it. My mom would have laughed at me...and then bought me a book on grief.

I think about heaven a lot more than I ever did before. What's it like. What is she doing. Do you get to meet people like Job or Moses. I called my aunt to laugh that if mom met Jeremiah she may have told him that his book was awfully whiny (that was the last book she was reading in the 'Read through the Bible' and she told me she was tired of his whining...I told her I hated to let her know Lamentations was next and Jeremiah wrote that as well).

I seem to be wide awake at midnight when I'm supposed to be asleep and exhausted at 7am when I'm supposed to be awake for work. That may not be all that abnormal, but it is annoying. So with that I'll go lay down and read until I'm sleepy enough to fall asleep. And we'll see what the weekend brings.

Hello Internet at Home

I just hooked up a phone line (as in stripped wires in the wall and connected them to a phone jack), connected a modem and wireless router, and installed internet...BY MYSELF. I know - I'm amazed that it's working as well.

Blessed

I am blessed. My family and friends are amazing. I can't describe how beautiful it is to experience the outpouring of love and support I've experienced over the past few days. Little things like a note on facebook, big things like a dinner thrown just for me at church with more people showing up to hug me and tell me they love me than I could count, balloons, flowers, calls, texts, cards, and most of all people's time. One thing my mom always taught me was that your time is more valuable than anything tangible you can give someone. While I always knew it, I don't think I ever truly appreciated it until now. The time people take to write me a note, the time they take to sit at my house and paint my toes, the time they take to let me talk, the time they take to pray for me over and over and over again. It's actually made me realize that my mom taught me how to nurture relationships that will now nurture me. I think I'm going to notice over the next few months a whole lot of things I didn't realize my mom taught me how to do.

A poem Cynthia posted for me that I thought was beautiful...
I'M FREE (Linda Jo Jackson)

Don't grieve for me, for now I'm free,
I'm following the path God has laid you see.
I took his hand when I heard his call.
I turned my back and left it all.
I could not stay another day
To laugh, to love, to work or play.
Tasks left undone must stay that way
I foun the peace at the close of day.
If my parting has left a void
Then fill it with remembered joys -
A friendship shared, a laugh, a kiss
Oh yes, these things I too will miss.
Be not burdened with times of sorrow
I wish you the sunshine of tomorrow.
My life's been full I savored much,
Good friends, good times, a loved one's touch.
Perhaps my time seemed all too brief
Don't lengthen it now with undue grief
Life up your hearts, and peace to thee -
God wanted me now, he set me free.

Never the Same

My mom died yesterday at 8:15 in the morning. My aunt was whispering in her ear, my dad was holding her hand and kissing her arm and Brandy and I were rubbing her legs. There is something about a mother's love that no one can surpass, and the thought that I will never feel it again looking in her eyes all but breaks my heart. My only comfort is that she is now totally healed, gazing in the face of pure love, dancing on the streets of gold, and worshiping the King of Kings. My grief isn't for her, but for us who won't get to see her smiling face and hear her perky little voice and be wrapped in her encompassing love that she was so willing to share with everyone she knew.

Decisions

It's hard making decisions for another person. Yesterday we turned down a last ditch effort dialysis because if there is one thing my mom is not for it is last ditch efforts that prolong your living but not your life. Weighing the pros and cons of each thing, the risks if things go wrong and possible rewards if everything goes right, and what she would have decided if she could make the decision herself if something I've never had to experience first hand. I'm thankful that my mom was the kind of person who spoke her mind and wasn't afraid to talk about or have an opinion on hard things. I'm thankful that she has a sister and a husband who are willing to make the decisions she would want, not the ones they want just so she can maybe possibly stay with us one day longer. Without that, I don't know how we would make the decisions for her. So today, regardless of the fact we didn't do the last ditch effort she is still here. Sleeping. Hopefully not in pain. Hopefully dreaming of beautiful and wonderful moments from her life. We keep talking to her so she knows we are with her, letting her know it's ok to let go if she wants to but we will be by her side if she wants to keep fighting. We are forcing ourselves to take breaks from the hospital and eat in case she chooses to fight. And everytime I leavethe room, I kiss her goodbye and tell her I love her and that I will miss her, but it's ok because she raised me to be strong and I will see her again even if it's not here on earth. I sure will miss her if it's not.

Stand

So, here we sit again in room 4 - literally the same room we were in last week. A day after getting home from the last round of disaster, she started having chest pain and Brandy had to bring her back in. 12 hours and a ridiculous number of ER people later, she was back in the hospital, and it's only gotten worse since. So, the report - she has a some kind of pnemonia we think but they can't do the diagnostic test because her platlets are low. Her platelets are low because she has this syndrome that is in essence eating her platelets. They can't give her more platelets because it just feed the fire. The fire was started by some kind of reaction to the anti-rejection meds, which she had just gone back on because her GVH response was so intense they couldn't keep her off them. The other things this syndrome are causing are confusion, kidney failure, and obviously low clotting because of the platelet loss. Thus, she can't go onto dialysis because her blood won't clot after the procedure, but her kidneys are in rough shape which makes it hard for the anti-rejection meds to break down, but they need to breakdown before she can get platelets again, and she needs platelets before they can do the test to find out what is in her lungs, making it necessary for her to be on oxygen. And so we wait. For her body to break this down, but not go into rejection, for the platelets to fall and the kidney enzymes to go up, but not faster than it takes for this stuff to get out of her. And all the while we try to stay sane and keep her taken care of because she knows us when she wakes up but sleeps unless we wake her up.

So quite literally, we are going to need a miracle to get through this one. People could say that the bone marrow transplant was medicine, that the GVH recovery was medicine, that the multiple myeloma recovery was medicine, and the million things she's gone in for in the past 7 years having to do with all that (even though I disagree), but when a top of the line doctor at the best of the best cancer treatment hospital says 'we have a diagnosis, but it's as scary if not more than the leukemia diagnosis' you pay attention. And when you ask him what they can do and he says 'at this point it's a God thing' you tell your brain not to freak out. And when you ask the statistics and he says that 95% of the people who have this do not make it, you tell your stomach not to throw up. And when you hear the 18 things that are going wrong and the 80 things that could go wrong depending on what order other things happen, and the immense insanity of all the things that need to go right lining up you tell your lungs not to hyperventilate. And then following that up about 4 seconds later you have to decide what life support you mom would want to go on if she needs to go on it and when she wouldn't want to and thus they should not do it irregardless of the consequences, you beg God to please give you a miracle.

So after an absurd amount of crying, begging, yelling, and talking to God (and a full day before I could even get the courage to write this) I've come to the point where can ask God for a miracle and say that I will stand on the promise that he is out Healer, and if that is not his will, I will be ok, but I will deal with it at the time. His mercies are new every morning, which means I can't ask for the mercies I may need down the road today. Hopefully I won't need them.

And having done all, stand (Eph 6:13)

You know your office is too cold when...

...you decide to sit outside and read the article you need to look through rather than doing it inside so that your feet will thaw in the 96 degree weather. 96 degree weather should not be something you CHOOSE to sit outside in!

Musings from the Car

Well, 11 hour drive number 2 is complete. I'm back in Charleston. I finished up my page and a half of 'to-do' list items for my mom, left the house in working order and my mom is starting to be able to smile again and talk on the phone, so I'm feeling good. They backed her off the IV antibiotics and are continuing to lower the steroid dosages, so hopefully she can go home early next week.

Between the drive up and back, and then at least one drive to Hopkins each day if not two, I have put another 1,000 or so miles on my car and have decided that I have a few general comments regarding driving for the blogspace...

1) I feel like it's not too much to ask there to be a law that tractor trailers are not allowed in the left hand lane of a 3 lane highway. I get that on a 2 way highway they need to be able to pass cars, but when there are 3 lanes, I just find it very difficult to swallow that the 8 tractor trailers spanning all three lanes and slowing all of us down to 40 miles an hour is necessary. Sorry that your tractor trailer buddies are 8/10th of a mile an hour slower than you, deal with life. You are 20 miles an hour slower than me and the other 50 cars you are slowing down in these 3 lanes!

2) Along those lines, but not really. How in the world can there be 5 lanes of traffic at 9:30 at night? It's truly amazing, but true. I left last night to drive half way back down, after much prodding from my mom to do so. I figured if I left when my dad went down for dinner visit to my mom, I'd be rolling through DC at a safe 8-9pm. And then I hit Alexandria, where I sat in 45 minutes of traffic to go 4 miles at 9:30 at night. No accident, no construction, just plain old, too many cars on the road. I apologize for any of you who live in that God-forsaken place. Let's just say, you would need to drug me and pay me about 18 times what I make now to move to Northern VA.

3) I do believe I've determined why road rage is so prevalent. Let me use an example from the land of fisheries management. If you study why overfishing is such a major issue, it pretty much comes down to the fact that our fishing methods have become too efficient for the fish populations. When we couldn't catch as many at one time, they could reproduce to keep their numbers up. But now, we can catch so many and so fast that they literally have no chance against us. Why am I comparing this to road rage. Well, on a given day if you walk to all the places you need to go you would pass a decent number of people, but not all that many, and while you may pass a person or two that was doing something somewhat annoying, it probably wouldn't be all that much of an issue because by the next block you would be out of their way. However when you are driving, you can cover so much more space in the same time that you just have a higher efficiency in meeting idiots I think. And so you inevitably pass the people who are driving like they are somehow totally confused by the general rules of courtesy and plain sanity. So, the car has made so we literally have no chance but to come across people that make us want to ram our car into the back of theirs, if only we didn't have to pay their damages :)

And with that, I'm going to go to bed. Well, read and then go to bed. I'm excited that it's in my own bed tonight, although I did miss seeing my mom and dad today. And the mint chocolate chip ice cream in the freezer was no substitute for a peppermint patty snowball...just saying.

Sugar

This is what happens when I go to Brown's Orchard unsupervised to order a cake for next week's picnic...Apparently my sub conscience has decided to gain 30 pounds this week - all I crave is every single sugar item I can't get in Charleston. In my defense, if Browns didn't make such delicious items and make them superior to everyone else, I wouldn't have to buy them all!

The Mom Update

I am getting ready to head down to Hopkins, so I figured I would throw an update out for the world in case they were interested :)

She is doing much, much, much better. Did I mention much? Most of her skin is back to just a sunburn color, almost all of the falling off skin is starting to come off, she can sit up for a better portion of the day now, and actually stand for short periods of time, and she was ordering the nurses around yesterday...always a good sign for her (not joking - the nurse walked in and she said 'so this is the plan for this evening'...good to know that's what you had decided the plan would be I figured he was thinking). We are figuring she'll be kept in the hospital until early next week. We talked to the doctors yesterday and apparently the main thing they are watching for right now is that all of her skin heals without any new infection, all the swelling goes away, and there is no indication the GVH is impacting any other organs. They have taken her off one of the antibiotics, and starting decreasing the steroids, which was good. And her white counts are actually in the normal range. Her hemoglobin was low, but when they gave her blood she only needed one unit instead of two to get it back into range, so that is good. And her platelets seem to be ok, because she is clotting at spots that her skins starts bleeding. Her lips are starting to heal and she can almost talk normal - her friend Patty told the nurse yesterday she would have a talk with him on how to deal with her once she can really start talking again :) And her eyes were almost completely open yesterday, a lot of the swelling has gone away.

So, all in all, we are on the way to recovery. That, however, was not fun. I'm pretty sure everyone agrees we should not plan to do it again, anytime soon...how about anytime ever.

Airline Logic

Sometimes I really do not understand airlines. My parents have been planning on hosting a picnic next weekend which Brandy and I were coming up for. I was going to drive, but in the interest of not making an 11 hour drive 4 times in 3 weeks I decided a flight may be better. So, we search for flights. The best we can find to BWI was over 400, which I thought was a little excessive, but I really didn't want to drive again, so the level at which I'll accept a flight price has in fact increased on this one. I went ahead and checked the 'search nearby airports' because I figured perhaps DC flights are a bit cheaper - sometimes they are, sometimes they aren't, you never know. As it turned out DC flights were not cheaper but a Harrisburg flight was, only 300! I looked at the flight and realized it was flying through Dulles, so I searched that specific airline just to Dulles (a longer drive, but if the flight is cheaper it may be worth it)...that flight was 600. Now really? Why is it cheaper to get back on a plane and fly to a new destination than to end my destination there? My dad said maybe I should check if it's only 200 to fly to Denver and then back to Harrisburg :)

So, I need to go to Pennsylvania

That was in essence my phrase for Thursday. There are very few options for summing up life post getting a call at 2:30pm on a Thursday saying you need to come home because your mom is doing bad enough that your aunt wants you and your sister to drive home. Here are a few other phrases of the week so far that help to sum up what is going on...

"I like free cell because it makes me feel like I have control. And when I feel like I'm getting out of control I just click 'new game'." -Brandy

"The sad thing is, the fact she hasn't eaten or drank anything in 2 days is the least of her problems, and the doctors aren't really all that concerned about it." - me

"That nurse....probably won't be calling us back." - Aunt Dona

So...let me start from the beginning. I don't think I've actually put much on here about mom since the transplant, but about a month ago her bloodwork started coming back weird again and they started finding blast cells (the cancer indicators), so they did a bone marrow biopsy and found that her bone marrow had been starting to grow again. New plan on treatment - they threw her back into a chemo regime, and off the rejection meds to try to get her body to start the graft (i.e. Brandy's cells) vs. host (i.e. my mom's cells) disease (i.e. symptoms showing there is a fight going on)...otherwise known as GVH. They succeeded pretty well, and for at least a week or so my poor mom has been covered from the soles of her feet to her neck with this GVH, which looks red and swollen and peeling, similar to a mix between a really bad sunburn and then after the sun burn is over when your skin is peeling, and when you sat on a plane too long and your ankles are all swollen...but all over your body. For whatever reason GVH generally does not attack the face so her face was spared the disaster the rest of her body was going through. She had said she was feeling bad, and she was getting less and less able to walk around as she got more and more swollen and red and blistery and peely. But because I wasn't up here and I really had no frame of reference for GVH I didn't really get what all was going on.

So, fast forward a few days...Wednesday night I was walking Kaylinn and felt like I should call home. My mom had just a bit short of an emotional breakdown on the phone with me about how she feels like this graft vs. host disease is killing her and she was tired of the fight. Indicator #1 we've got a problem. But after I was talking to her for a while my dad came home,I could hear her voice sound better that he was there, so I got off the phone, had my own personal crying party and then read the Bible until I calmed down and went to bed. Thursday afternoon, I was sitting on a conference call at work and saw my parent's house was calling on my cell phone. About 5 minutes later I saw a call come through from Brandy's phone, and about 30 seconds after that saw a text from her 'call me asap'. Indicator #2 that we've got problems. The call was supposed to end in 10 minutes so I texted her to ask if I should get off the phone then or call her in 10 and she said to call in 10...so at approximately 2:30 on Thursday I was informed that my aunt was trying to get in touch with us to move our trip up north to right now because Thursday was not going well. At which point entered my phrase for the day to explain my immediate departure from life - cancelling the rest of the day's calls, dinner plans, weekend picnics, and Sunday teaching. And leaving my poor intern and previous intern to deal with the three full day meetings that will be going on next week.

24 hours after talking to Brandy, I walked into my mom's hospital room. There are really not words to describe it. My aunt tried to prep me on the way to the hospital, I tried to prep Brandy the next day on the way to the hospital - in reality there is no way to prep someone. My aunt delivered the full story on the way down. Apparently on Thursday morning my mom noticed her tongue and lips felt a bit swollen. My dad had decided the night before to stay home from work based on the night before, and she didn't fight him, which is a good indicator she is feeling bad when my mom doesn't fight you on it. She called the hospital and they called in a prescription that my dad went and picked up, but from about 10am until about 2pm when my aunt called Brandy and I things became much much worse. My uncle is an ENT (ear, nose and throat doctor), and when my aunt saw how quickly my mom's face was swelling she called him to get him over there because she thought he was going to need to open her airway. Then she called the hospital again and literally had to threaten a nurse to even get a doctor on the phone (that is the nurse that she said will probably not be calling back). When we got my mom's doctor on the phone she was saying there weren't enough beds, my aunt's response was 'there is no one in that hospital that needs a bed more than my sister right now'. She finally forced the doctor to agree to let her come to outpatient to be looked at but said she can't guarantee a bed, to which my aunt said 'you may as well get a bed ready because when you see her, you'll admit her'. And she was right. My dad had to carry her out to the car because she couldn't even walk her feet were so swollen and blistered from the swelling. At the hospital my dad dropped them off at the front door, my aunt took her in a wheelchair to outpatient and by the time my dad parked the car and walked up to outpatient they had moved her and admitted her. My aunt said they literally took her vitals and admitted her. She had a fever of 105, her heart rate was through the roof, and in her words she 'looked like she had walked out of a horror movie'.

I'll spare the details of their first discussion with the doctors, except to say they finally agreed to stop the GVH, which involved "massive amounts of steroids". She has so many things dripping into her the IV stand is literally filled.

We are not taking any pictures of my mom because that is just wrong, so we tried to find a picture on the internet to explain what is happening to her (because I promise you, you have no idea, not in your wildest imagination). We could not find any. There was one of a person's hand that was kind of close to what her whole body looks like, which we actually found under the search topic 'severe burn victim skin falling off' because my aunt said the only thing she has seen like her skin is severe burn victims. But, I decided I'm just not even going to post it. Her poor little eyes are barely slits - you can't even see her eyelashes they are so swollen. And her lips are all broken open and bleeding. She can't feed herself because she can barely use her hands at all. Even if she could use her hands she can barely open her mouth because of the sides of her mouth, and the inside of her mouth is like all the rest of her skin so it hurts and is peeling, and it's just awful. Today she actually drank an entire 16 ounce high protein shake we got from Gold's Gym (we think outside the box, people), which was good.

But each day she is getting better. The swelling is going down. Her skin has turned from one shade short of purple, to really dark red, to dark red, to most of it just being red now. She asked me when I'm going home because 'I'm HAVING that picnic on the 14th and you need to come back again', although then when we were discussing how to rearrange plans so Brandy or I could be here over the next 2 weeks she didn't really fight us - so her feistiness still has a bit of a way to go. She is talking more, which is a decent health indicator for my mom, but it still hurts to move her mouth, so not too much, and she still gets pretty sleepy from just about anything because it's such a process for her body just to keep itself going. But she is laughing at our jokes, and telling us what we need to get done, and slowly but surely becoming and looking more and more like my mom.

So two things for the world at large to ponder before I go...
1. One of the hardest things about major illness is understanding when to trust the doctors and when you need to be your own advocate. My mom very literally could (and possibly would) have died on Thursday if my aunt hadn't made the decision at that moment that what the doctors 'knew' was no longer the answer. When to draw that line is very hard because you can't go through major illnesses questioning the doctors every step - it's not healthy for you or helpful for them - but you also can't go through the process taking everything they say as gospel. God gave my family a lot of nurses, which is very helpful in a time like this, and I can only pray that other families are as blessed.

2. Inevitably I always get the question 'so, how are you doing?' What really is one to say? I'm not sure how to answer it, I don't know what people are looking for in asking it. I'm doing pretty crappy, but that doesn't mean that I need to act or let myself feel that way. Life goes on. You can't sit and cry all day, and you can't whine about the boulders in your way at the moment. You have your moments (I personally choose to have those moments between me and God and really prefer others not to be involved in them), you pick yourself up, dust yourself off and you move on. I don't really know what else to say. I don't feel the need to dwell on how I feel, because I've chosen to not be led by how I feel. But I also don't feel the need to say all is well and pretend I'm fine, when I'm not. So, all of that is to say. I'm crappy, but I'll be fine. God and I will work my personal emotional issues through, I appreciate every prayer that goes up for me, it's really and honestly the best thing you can do for me at this moment. Sometimes I just want to go on a bike ride to the snowball stand and eat a peppermint patty snowball with marshmallow and then a mounds snowball with marshmallow...because, well, why not? Snowballs are delicious. Bike rides with your sister and brother-in-law are beautiful. And life isn't going to stop just because your own tiny slice of the world hit a bump. Pastor Harris preached out of Isaiah 51 today, but as I sat reading the rest of the chapter and into Isaiah 52 these were the verses that stuck out to me - "Awake, awake, O Zion, clothe yourself with strength, put on your garments of splendor...shake off your dust...for this is what the Lord says 'You were sold for nothing and without money you will be redeemed'...Your God reigns!...burst into songs of joy together...for the Lord has comforted his people."

Amen. and Good night.