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!


  1. Dani, I was and am so sorry to hear about your mom. She was like a 2nd mom to me when I was a teenager and loved hanging out with her and your dad. You kids were adorable too. Please tell her thank you for everything she did for me and that I love her. Tell her to give my mom a hug when she gets up to heaven. They can hang out together. I lost my mom to cancer almost 3 yrs ago now and I miss her and think of her every day. It goes between hard and ok moments but I know she is with me and your mom will be with you. I wish she was here to see my kids and watch them grow in person but feel at times she is doing so from above. I'm here for you and am grateful you posted this. Please give her a hug for me and I'm sending you a hug too. You may not remember me but I remember all of you with a softness in my heart. Please laugh and enjoy the moments, that's what life with loved ones is all about.

    Hugs and loves...Rachel Eoff Saling

  2. Just love to both of you & Eli and for both of you & Eli.


  3. I heard this morning that your mom had passed and wanted to offer my condolences. I am Blenda's sister. We live in MD but will be thinking about your family during this hard time. HUGS!!!

    ~Kim Burke and family

  4. Dani and Eli,
    So sorry for the loss of your Mom, I loved her dearly, she was very close to Chris and me and our kids for many years...the world lost an angel here on earth and now she is in heaven...wishing you peace and strength and please lean on others in your family for support during this time...see you soon...
    Aunt Carrie

  5. Dani, you don't know me but I was a friend of your mom during High school and in Young men/Young women at church. I offer my condolences to you and your brother. M'Lisse was an inspiration to us all. I hope you find comfort in the Lord's plan of salvation. She deserves the Lord's greatest kingdom. I will never forget her. I wish we could be there for her funeral but we live in PA. God bless you. Dean Orr and family