So, let's set the record straight on what 'hospice' looks like. I'll admit, I used to think was all tubes coming out of everywhere, gasping for air and a lot of dramatic reaching across the room at nothing. It is not. What it is - a nurse that manages my meds, comes in 3 times a week to take my vitals (blood pressure, temp, heart, O2 level), we chat about my pooping, or not pooping, and that is really about it. So I hope that paints a little more accurate picture. It also offers lots of other resources which are really helpful - from pastoral care to house cleaning to bathing assistance to assistance of any kind. I found it quite different from my stereo-typical perception. Shame on me. There, enough of that.
One thing I probably should do here, but am extremely reluctant to do is post a current picture of myself. To be honest, I'm embarrassed. I look nothing like I used to look at all. I could take the baldness, that was easy in retrospect to where I am now. I am jaundice because of my high bilirubin levels, I'm extremely thin and old looking on the top of my body, if that makes any sense, but then fat and filled with fluid on the bottom of my body. To make all the more special, my belly is protruding so badly it makes me look like I'm at least 8 months pregnant. I am relying on the walker now because of this balance issue, the cracked pelvis from Annie (which I don't regret at all!), and just general pain. It just plain sucks. I know I've been very forthcoming about this is the past but right now, I just can't be.
The pain level in my liver is slowly increasing therefore my pain meds need to be increased. That makes my bowels move at a snail's pace, causing horrific pain as well as I try to balance laxatives, stool softeners, pineapple, anything to get things moving. Sorry for being so graphic. No, I'm not; this is the real picture of what dying for me looks like, I guess.
Everything that everyone is saying about me is making me feel like I have one foot in the grave, which I guess I do. However, I see it as my port was receiving man made medicine for the last 3 1/2 years and now it will receive what God chooses to give me. At first, I didn't know how to pray. Did I pray for a miracle? Did I pray for complete healing? What I pray for now, after much thought was something that a good friend shared with me. I pray for peace and healing, either this side of heaven or the other. And, as Pastor Mary graciously gave me in her wisdom, whenever I am afraid, I stop whatever fearful thought I am thinking and I say out loud "Jesus, I trust you", because I do. I trust Him so much. To be honest, fear does not come upon me often at all. I feel like me. Sleepy, but me.
I have never used this blog to address anyone, so this post is very difficult for me because I'm not speaking to anyone specific at all. I just want everyone know collectively that I'm not dead yet and only the Lord knows when that will be. I have to say that I feel very much like the Monty Python skit "Bring out your dead", and I'm the guy slung over the shoulder shouting "I'm not quite dead yet...". On the other hand, as much as that makes me laugh, watching "It's a Wonderful Life" will mean something much more to me this year, because it is.
God Bless,
Dina
DINA'S BOOB BLOG - An online journal of my breast cancer experience.
I was just thinking this the other day as I cried over you. And then I started thinking that God must have great plans for you if he needs you so quickly. You are loved and always will be.
ReplyDeleteI was just thinking I hope my pleas on Facebook didn't come off too 'she's gone'- I think anytime I ask for money or donations, I always ramp up the drama to get people involved. I have this vision of tons of money and stuff coming your way... I think I'm still in total denial about the state of things with your medical condition. I'm still pretty sure you're invincible. You're Dina Kay. Writer, rock star, comedienne, mommy, wife, and friend... I was talking to Cody last night and he caught me in a moment of melancholy. He asked what was wrong and I said our breakfast buddy got really sick and it was really making me sad. He usually changes the subject and talks about Ninjago (some lego bullshit), but he said he wanted to find all the money in his room and all the money in his school to buy you some food to make you feel better. What an amazing little Jew he turned out to be, trying to cure the world with food?! lol We love you. Love your humor, your blog, your updates. Even amid some of your darkest days, you seem to still be taking care of all of us by humoring us with your thoughts and words. Beautiful Dina.
ReplyDeleteLove you,
Sami
You are funny :)
ReplyDeleteI hear lots of poop stories....I do hair!! Lol....hugs girl :)
Patty Brinkman
Thank you Dina! I love your honesty and bravery! We all have a lot to learn. Blessings! It's A Wonderful Life, our favorite too! And yes it is!
ReplyDeleteThank you for keeping us posted, Dina---I'm trying to imagine how fun it was to hang with Pastor Mary. I'm praying for strength for each day and bus loads of comfort--
ReplyDeleteLove you-
Lots of prayers for peace and healing coming your way! You are such a great and funny writer, you always make me smile.
ReplyDeleteGod Bless
Melissa Bates
You'll always be 18 in my head so post the picture or don't post, I think you are allowed some vanity. Thanks for giving an honest reaction to this death business. As long as you brought up Monty Python, you may want to listen to "Always Look on the Bright Side of Life" from Life of Brian. It always makes me smile and is quite philosophic in a way. Nothing but love, smiles and positive thoughts are being sent to you and your family from my family.
ReplyDeleteHi Dina. I understand you feel like the father in The Holy Grail: "I'm not quite dead," but I've always thought of you as more the Morgan Freeman type in The Bucket List...living life fully until the end. Playing Annie, dancing with a broken hip, devoting hard-core quality time to your loving family. You've danced in the storm where many of us would much rather hide under the table! I truly believe that who we are during the most stressful times is who we really are deep down, and you've been so brave and so defiant in cancer's face that it awes me. I rarely have the opportunity to say this to our patients, and I want you to know that in many big and small ways you've not only impressed me but you've also inspired me. It has been such an honor to know you. While it is true that we all die, not all of us really live. You do, and to live with such passion even after all you've been through and are going through makes you truly unforgettable. If anyone has earned her wings it's you. God has blessed your family by giving them you.
ReplyDeleteDear Dina-
ReplyDeleteI am so honored to have been able to see you in "Annie-" You made me laugh so much and I have not done that in a very long time-you have a wonderful gift-Alexes loved having your daughter in her dance class and mentioned how nice you were.
When she saw you were in "Annie-" she continued to rave about how polite and nice you are-Alexes is a very good judge of character by the way-as you continue your journey know that your beautiful daughters you brought into this world will always have you in their lives. I pray God comforts you and you continue to be the beautiful lady you have always been-you have made a big difference in my and Alexes' life that will never be forgotten. We have collected some great things from some of the cast member's of "Annie" and I will make sure to get those to Jennifer asap-you really are an awesome lady! Love, Alexes and Tamee Niekamp
You have a beautiful soul that shines through your posts and I'm sure whatever 'un-prettiness' you may see in yourself, it would shine through in any picture.People who have met you in the flesh are blessed.And yes, we need education about the reality.
ReplyDeletepraying for you and your family, still sweet Dina. You are an inspiration and teaching valuable lessons, I thank you. God Bless you. We have never met, I went to school with PJ, but I feel like I know you as I follow you and PJ on FB and your blog. It makes me laugh and cry. Sending love and prayer, I don't know what else to do.
ReplyDeleteDina, I was led to find your blog after reading about you in the "Courier" - you, my dear, are an inspiration to so many people. But what can I really say to you? I don't know except I am praying for you - but that must sound like a cliché cause how many times have you heard it? I guess what I want to tell you is what a beautiful, magnificent spirit you have -- one that so many 'healthy' people do not have not will ever have. So in that way (AND the way that really counts) you have us all beat. Hang in there, girl, and know that you are loved by so many - even those who have never had the good grace to meet you.
ReplyDeleteHi Dina, I have not seen you in a long time but I remember our time fondly. I would have liked to have had more:) I wish nothing but love for you and your family.
ReplyDeleteDion Johnson
Hi Dina,
ReplyDeleteI'm so happy I found you on here, I've been so concerned. Terri at WOW told me about this blog. I just wanted to let you know how much you have helped me in my cancer journey. You've opened up a wee ministry for me when you told me how much the Hope & Courage quilt meant to you. I talked to my nurse navigator at the Breast Center at YRMC, and I'm going to make lap quilts for them to give to women who are newly diagnosed. I've committed to one every 6 months, but I'm hoping I can stay well enough to do more. You've taught me to pay it forward, dear Dina. Thank you! :0)