Dec 18, 2010

the storms approach ever so slowly

Hello dear ones.  I hope everyone is reading this from a cozy spot in their house, sporting five dollar fleece sweatpants from Wal*Mart, engulfed in a pile of warm blankets with a steaming mug of hot chocolate, because that's exactly how I'm situated right now... Except not in my own house--from my Aunt Wendy's--we've made several significant changes and decisions over the last couple weeks to say the least.

Mom had been doing "so-so" for a couple months, but around December first I began to notice a rapid decline in her overall condition.  That Wednesday she had gone to dinner with one of her best friends, Karen Julian, to their favorite restaurant in Newton ( which required a lot of energy on both of their part.  But, mom insisted on going. Of course Karen was extremely helpful, patient and gentle while switching mama to her short-term oxygen tanks, hauling her in and out of the house and Rebas, and getting her tucked into bed (I was out running errands), but she pointed out to me later that evening that mom hadn't eaten more than one bite of food, and had seemed sooo relieved to collapse into her bed afterwards.  She had been at home resting for several days before going to dinner, so I was a little surprised she had become so exhausted from such a short outing (especially because she had been traveling back and and forth from Wichita, going to movies, dinner, etc., this entire time. Again, getting her around hasn't been a piece of cake, but she's been able to do it).  Because she's been on morphine for several weeks, I assumed it was starting to affect her more as she continued to take it, even though she was taking less than she had been prescribed.  The next several days, mom hardly got out of bed, and when she would, she'd experience intense nausea, which led to dry heaves (no food in her stomach- her appetite had shrunk to zip), which led to pain.  I began to feel more and more concerned as her weakness increased on a daily basis-the day after her dinner with Karen, she was able to walk from her bedroom to mine (with me completely holding her up, of course). The day after that, she could only make it to the recliner in the living room. Day after that, only to our hallway restroom. Within four days she couldn't even get up to go to the bathroom.  She also began to experience more confusion and hallucinations than ever. It wasn't funny anymore. It got to the point where she would ask me a question and whatever my answer was, she would think I had already said the same exact thing.  She'd look at me, crying and say "quit playing tricks on me!" At one point she asked, in a really scared voice, "why do you keep doing that with your chin??," like the way I'd tilt my head when asking a question was freaking her out. It was as though she was having constant deja vu, which as we all know, is a very trippy feeling.  She had chemo scheduled that week, so I called her nurses to ask about her symptoms. They told me her weakness, hallucinations and loss of appetite weren't caused by the morphine because your body adapts to most pain controllers as you take them.  They then called Dr. Mattar, who said it sounded like everything she was experiencing was caused by the progression of her disease, not from medication or chemo or anything else.  They said they were going to skip chemo that week, and instead decided to send her to have bone scans, MRI, CT, blood tests-- the whole shabang-- to see how much further the cancer had spread.  We were supposed to have her tested on Thursday, and meet with Mattar on Friday.  I sat in our kitchen, wondering how on earth she was going to drink all that barium (she could barely stomach it even back when she had a massive appetite. it's super thick and syrupy and nasty. I used to have to show her how to plug her nose and just chug.) and keep it down for her testing. Then I wondered how on earth I was going to get her into my car, out of the car and into West Wichita Family Practice. And how on earth she was going to stay awake for the (minimum) four hours all of this would take. Then she'd have to get out the NEXT day to see Dr.Mattar, only to hear tests results that would most likely reveal what I already felt in my bones. After several minutes of intense pondering (whew!), I dialed up mom's nurse (who had just taken all that time to schedule those appointments at WWFP) and said, "Kimberly, let me ask you a question. Do you think it's worth it to exhaust my mom to the point where it may cause her some serious harm to get answers we already know?" and she said "No, Dani, I don't think it is." "Did Dr.Mattar order these tests just to provide us proof of what he knows is happening?" and she said "Dani, I really think he is." and I just said, "well, I don't need that proof. I know what is happening as well. Can we just focus on making her as cozy as possible?" and Kimberly said, "We can do that." She managed to remain as professional as possible, but I know how difficult it was for her to make the call to obtain the order for Hospice from Dr.Mattar.  The nurses who have worked with my mom all these months have become like family members to us. They have seen us through our good and bad days, comforted us, and done everything within their power to personally help my mom aside from just administering her chemotherapy.  I really don't know how many times I've burst into the cancer center, panicking about something or other, and they have just hopped to my side, supplying thorough answers to all my questions and concerns while managing to ignore the probably rabid look on my face as though it's nothing.  My mom has been incredibly sweet right back to them and had everyone wrapped around her finger from the moment she hobbled into that Cancer Center. Her clever little quips have had them laughing every Wednesday for almost a year. So by giving us this order, they were handing us over to a brand new crew, and will most likely never get to see her again, without a chance to say goodbye. It truly breaks my heart.

We moved mama to Wendy's the next day.  It's been our plan for a while that once we made the decision to bring Hospice in, we would move up here.  Wendy lives a couple blocks from my grandparents, so they are here all throughout the day and can arrive in a moments notice.  Wendy has always been like a second mother to me because her and my mom have never lived further than 20 minutes apart. They lived two blocks down the street from us in Newton for the majority of my childhood.  Her children are like my extra siblings.  She truly has been my mom's best friend for their entire lives.  This- us living here now- is how it's supposed to be. For them, and for us.  She had the room all prepared for mom before we even arrived, with these cute prints hanging around that seriously capture my mom's 'tude about cancer:

She also has this little board hanging for us to keep track of medications, drainage instructions, hospice phone numbers, and the date printed nice and big for my mom to see so she knows which day it is. That big yellow certificate is her Radiation Therapy Merit of Completion. Bahahah. Wendy, her husband, and their kids put in a lot of work to get it all cozy and nice for her and I think it's just perfect.

Hospice came on Friday.  We were all feeling a little apprehensive, but the meeting went really well. They did a head-to-toe evaluation of my mom, provided us with a little "comfort kit", containing medication to control her pain, nausea, and anxiety. All of her other pills are done-zo. The meds she has now are all drops that are absorbed in the mucous membranes beneath her tounge, so she doesn't even have to swallow at all. It's just...great.  I still drain her pleural effusion and give her lovenox shots twice a day, but the huge cutback on medication (I've become accustomed to giving her about twenty pills a day) still feels abnormal to me.  I keep feeling like I'm missing or forgetting something, but now we just give her what she needs when she needs it. She hates the taste of the morphine so we give her a little shot of apple juice before giving her the morphine drops, but I know she's been majorly downplaying her pain levels to avoid the "yucky" stuff. Just last night, before I went to bed, I asked her if she was in any pain or needed morphine and she said "no, I'm alright."I was sitting in the kitchen not five minutes later when I hear her little bell (of course Wendy gave her a little bell) ringing. "Yeeeeesss?" "maybe I need just a little morphine?" she looked like she was in horrible pain. I hate when she minimizes her pain like that, but when it does become too much she lets me know. 

We LOVE our Hospice nurse. She had a hospital bed delivered to Wendy's, with an inflatable/deflateable/adjustable mattress so my mom can change positions whenever she wants or needs to (every few hours), inserted a urinary catheter so she doesn't have to waste the little energy she does have on getting up and down to go to the bathroom, and gave us all her brand spankin new medications.  She explained that we should never encourage mom to eat if she isn't wanting to-- because the cancer gets fed first, and mom can eat so little (we're talking three bites a day), that nothing is leftover for her. That thought alone just made me want to puke. Have I mentioned--I HATE CANCER?!!? Aside from that, digesting food takes a lot of my mom's energy so making her eat it really just wastes energy she could be saving for family visits, etc.  It's hard to completely change the mentality we all have that food=nutrients=good for mom. Food is her foe. Food...Foe. It's really weird, I know.  Her nurse, case worker, and CNA (who stops by three times a week to give her a bed bath) are all just...awesome.  After her evaluation, my aunt and I basically cornered her nurse and said "soo...????" We were told it looks like mom has a couple weeks left.  We're hoping she will make it to Christmas, but once again--we are so grateful she has made it this long.  We have been so lucky compared to others who lose loved ones within two months (or sooner), of diagnosis.  I wouldn't trade the time I've had with her for anything in the world.  I'm not saying this just to make her look good, or just because she's my mom and I love her more than anything else, ever, but she has been unbelievably strong and steadfast and brave through ALL of this.  I know she would roll her eyes at me saying this, but I testify to all of you-- she is one bad mama jama.

Hospice is limiting visits to family only because her immune system is nonexistant, she has such little energy, and simply, her time is just so limited.  We really hope everyone understands, and knows that we are aware of your love and support and appreciate it so, so much. It has become more evident than ever this holiday season.  Thank you for everything.  I probably won't post for a while, I am writing this in her room (she's snoozin), but please do know how grateful we are for our family and friends and..everybody!! I'm sure everyone pictures us in a gloomy, somber, depressed state right now. Wendy's home has always been one of laughter and joy and this week we have all spent the majority of our time laughing and reminiscing and...being merry. We do have moments of unbearable sorrow each and every day, but with my mom still here it's impossible  for them linger very long.  If you know her at all, you understand.  Merry Christmas Everyone. We love you.

p.s.AGAIN, please excuse my terrible writing. I feel like I'M on morphine:

Yes, you may borrow the bags under my eyes to pack for your next three week vacation. Ka-pish!

Dec 4, 2010

I have five clocks in my life and only one has the time right.

Alright, so I'm just gonna go ahead and nominate myself as the World's Worst Blogger, because I haven't even logged on once in the last several weeks to update. I'm so sorry I've been such a slacker, but I doooo have legit obligations that I knowww everyone else also has goin on this time of year: end-of-semester school load, church activities, long working hours, doctors appointments, holiday extravaganzas galore. Once my finals are over (next week whoop whoop!) I'll be more on top of keeping this guy posted because my schedule will ease up a lot. Once again, this post will have to be short and sweet because I have a 12 page paper to begin today and I've already been way too distracted by college basketball all afternoon (so bummed about the Butler/Duke game! I've been wanting to see those malicious Blue Devils lose and burn to a crisp right there on the court all season, and Butler so deserved that revenge. ughh.).

Mom finished radiation two weeks ago, and has spent most of her time since tucked away in bed.  After her most recent surgery, where Dr.McEachren installed that little drainage catheter in the pleural cavity behind her lung, I began draining the fluid as it built up every three days. The accumulation of fluid in that area prevents her lung from begin able to expand as she inhale and exhales, which makes it more and more difficult for her to breathe.  It's pretty awesome we're able to make it to regulate and control the amount of that fluid from home, but the drainage process has caused her a lot of pain.  Not only is the incision site around her catheter still sore, but when you have fluid building up like that and then whoosh it's all gone, the sudden release of that tension causes some intense pain.  So she was given a prescription to morphine, which has helped immensely. I knew she'd start getting pretty loopy, but I really wasn't prepared for how much entertainment I'd receive on an hourly basis. It's been a real trip to say the least. She's adapted to the morphine enough so she's no longer hallucinating as much as the first couple days she was taking it, but she still says some pretty funny stuff.  She spends a lot of time sleeping, and I know she feels like she's in a major time warp. Whenever she asks me what time it is (especially like now, since it's 5:30 and dark outside) her eyeballs always nearly pop out of her head, and then she'll ask, "what day is it??" and when I tell her, she just closes her eyes, shakes her head, and says "you're insane." bahahaha. When we initially began the whole drain-at-home procedure, the nurse suggested we do it every three days and see how she felt, and based on the amount we drained, we could do it more or less often.  We're now draining every other day, about one liter, and will probably have to start doing it every morning because it's just building up faster and faster (the tumor causing this fluid build-up is growing pretty quickly) and we've got to make sure to stay ahead of it, in order to keep her as comfortable as possible. 

I was going to post pictures I took of her catheter, the drainage procedure, and the fluid we pull out, but a guy friend I work with (who has been watching over my shoulder as I upload photos) told me I was sick and twisted and nobody wanted to see anything like that. Obviously mom and I spend too much time watching Discovery Health because we live for stuff like this. The whole time she's being drained (which, remember, really hurts her) she's always shouting "wooahhhh!! that's awesome! that's AWESOME!" as she watches it build up in the collecting bottle.  Seriously, if you want to see some fascinating junk, shoot me a text and I'll send you a picture.

We were really dreading Thanksgiving because, well, the boys are gone, and everything's so different and weird and depressing and just the thought of trying to celebrate without them seemed so impossible.  Every year on Thanksgiving day, we'd always wake up early to watch the parade while mom worked on her yams and greenbean cassarole, I'd slave away over a cheeseball or three, Seth would meticulously concentrate on whatever dessert he'd decided to compete with Melia in that year, and Eli would do absolutely nothing in the kitchen (besides snack on the food we were making) but has always made a great DJ. We've always listened to Radiohead on Thanksgiving morning. Kind of weird, I know, but it's our family's favorite band (including mama's. She's pretty cool, you know). Last year I remember she asked for something gangsta and the four of us were rapping along with Snoop Dogg and Ice Cube. We'd pile into the car and head to Grandma Kay's, where Wendy, Ryan and the kids would already be sitting at the table with with silverware in their hands, ready to chow down. This year ended up being really great.  My mom's brother David and his family traveled from Arkansas and Dallas, and her other brother Matt drove down from Iowa with his wife and four little boys.  Just having extra people than the norm made it different enough so it wasn't as noticable that we were missing our boys. As I was driving us up to Grandma's, I looked over at my mom and just burst into tears (I rarely, rarely cry) and she smiled and said, "sweetie, we're going to be happy today."  It was such a fun dinner, probably the best Thanksgiving feast I've ever had. Seeing my aunts, uncles and cousins is always a blast, and mom had a great time talking with her brothers, in-laws, nieces and nephews.

cute hat, huh?

On Black Friday, the fam came down to Newton to help deep clean our house, paint a couple rooms and hallways, and clear out extra stuff in the garage. I'm still in awe of how much they were able to accomplish in one day of (HARD!) work. It looks sooo much better, and puts us that much closer to getting this baby on the market. The day after I'm done with finals, we are meeting with a realtor and getting the show on the road. We have decided to move my mom up to Wichita into my Aunt Wendy's spare bedroom, which she and Ryan have set up just perfect for a little cancer patient. I'll have to post pictures once we're all settled in, because it's just arranged so adorable. I'll be staying at Wendy's as well, but driving back to Newton several days a week to keep up the house and yardwork, and to work at Sports.  Mom and I are both looking forward to the move because it's so comforting to have someone with her when I can't be there.  My boss has been so understanding when I leave work (I live 2 minutes away from Sports) to check on my mom every couple hours, but it's at the point where she does need someone constantly with her. It's so, so gracious of Wendy and Ryan to offer their home to us. Wendy is my mom's sister, best friend, and has always been like a second mother to my brothers and I. She has already helped so much with my mom's care, and I couldn't be more grateful for the sacrifices she's made for all of us.

Aunt Joni! She stages houses for a living, so I grabbed her shoulders and said "tell me what to do here!" She's awesome.

My cousin Christian slaving away. I didn't get pictures of everyone else who helped that, but THANK YOU Grandma, Papa, Matt, Blenda, Alex, David, Robert, Wendy and Ryan! Especially for the nice fresh paint smell we enjoyed the following three days.  At first I was kind of worried the smell would make mom sick, but she said "the fumes will probably do more than my chemo!" Ha, ha.

Mom's appetitie has diminished quite a bit. The other day she ate one peanut butter cracker and said she felt like she'd had another Thanksgiving feast. We've started to focus on feeding her several mini meals throughout the day, that way she doesn't get sick from being too full but is still getting all the nutrients she needs.

I continue to be amazed by the love and support we've been shown by our friends and family.  I've made some friends in a couple of my classes, who really don't know the story about my mom (let alone my brother) but have been keen enough to tell I'm feeling a little stressed, and a few of them brought dinner to us the other night. Women in our ward continue to drop off meals, the Ribbons of Steel women biker group in Wichita (who organizes fundraisers for different causes every single month) held a birthday party at which the bday girl requested donations for mom's medical costs in lieu of gifts. People. Are. Awesome. There is so much good in this world. We are so lucky to have such a huge support system. You all make more of a difference than you'll ever know. I'll KEEP SAYING IT! Because it's the truth!

The highlight of my week was getting to attend the Kansas/UCLA basketball game in Lawrence, with my mom's longtime friend (and my best friend Kimberly's mom). SUCH an intense game. Thank you Mario Little. Allen Fieldhouse gave me goosebumps from the minute I walked in the door until I went to sleep after the game that night, and I had absolutely no voice the next day. ROCKCHALK.

Now I'm off to write my paper. In five days I'll be done for the semester. I. Can't. Wait. Winter break will bring my girlybabes home to see me, more family visits, holiday baking, and hopefully enough free time for me to catch up on Glee. I promise to become a better poster. Keeses.