No More Pity Party for Susie

Posted by Sue's daughter, Katie

On Friday February 10, 2012, at 1 pm, my mom lost her two year battle with lung cancer. When she was given her terminal diagnosis in September 2011, we were told she only had a few weeks left but she fought so hard that most people were shocked to hear she was so sick. On Monday February 6, 2012, she took a turn for the worse and thankfully all my siblings were able to be here for her last week.

We spent our days and nights in my mom's bedroom with her, watching home videos, eating in bed, singing, telling stories, and also spending one on one time with my mom. Her last moments were very peaceful and she was surrounded by all her kids and some of her siblings. Just a few hours before she passed, Lauren played the guitar while we all sang (off key and slightly teary). Lauren sang Heaven by Moonpools and Caterpillars after my dad passed away and she sang and played it again for my mom on Friday morning. It really was a beautiful morning. I don't think my mom could have asked for a better send off.

Iowa Hospice provided her hospice care and they were such an amazing group of people. Her nurse, her CNA, the chaplains, the massage therapist, the music therapist, her doctor, the social worker, the on call nurses-every single one of them loved mom and helped my mom through the hardest journey of her life. When hospice arrived after her death, there was not a dry eye in the house. My mom was not just a patient to them-she was a mother, friend, and fighter. We were blessed to have found such a compassionate organization to take care of our mom and to support our family through all of this.

We are all hanging in there and thankfully we have each other, our close friends, my mom's friends, and my mom's nine siblings. Even though she is gone, we feel her presence so strongly in the love and support we have received from everyone. I know she is up there with my dad looking down on us now. To look at this horrible situation as a positive one, my siblings and I now have two guardian angels who will guide us and keep us safe.

Thank you to everyone for all your kind words, thoughts, and prayers over these last few months and especially over these next few weeks while we grieve our tremendous loss. We are having a small private service on Saturday 2/18 and we plan to celebrate her life with her closest friends and family. In lieu of flowers, please send memorial contributions directly to the family. Information can be found at www.hamiltonsfuneralhome.com

Thank you all for your love, support, and comments over the last two years. My mom was a blessed woman.

Love,
Katie

Narcotics and stupidity and dumber and dumber..

Can't believe how lack of sense I have. Can't find anything...purse, phone, keys, hands to hold. Most of the time I just want a hand to hold. I can't even drive a stick by myself because of the narcotics and I might fall over. No wonder I never did drugs when I was young. I like to be in control. I want to know that THIS IS ME AND AND I'M NOT GOING TO HURT ANYONE.

6 in the a.m. and I can't walk by myself because because I might wipe out and get confused. I take an early morning bible class (SALT) and know some of the ladies from my Y Healthy living class. How fun to recognize them. And have reconnected with friends from Elkhorn, WI who are going through similar things with me. How our lives are following a pattern where we can actually help each other and be there for each other. God is NOT leaving us alone to be alone. How wonderful. I am taking a trip to Orono, MN when Terry, Allison, Sebastian and Arleigh move next week. It's supposed to be about a 4 hour drive. We'll see. I hope the drive isn't that long.

I will sorely miss the baby. She has gotten so much personality in her little body and is always laughing and fun. She is one happy baby. I will miss her to pieces. She certainly does like to sleep with her grandmma and anyone else she can pat down for food. She's special. I will upload some pictures and everyone can see how wonderful she is. And yes, Virginia, she DOES get up at 6:30 a.m. and she IS happy to be up and around and go to the library and go out to breakfast and do things early because we are EARLY morning people. I don't care what anyone else says. WE GET UP EARLY!. I will miss my pooh-doll. I'm excited to be with her and pat her down and make sure she has just as junky food to eat as me. No candy bars though. Love my baby's. Wanted her to be here. today, tomorrow, yesterday, and all the days in between.

We'll figure everything out. Love all my kids and animals. Momma-Sue

No photos on todays blogspot. Will have the kids snap some soon. Yes, I'm on dexamethasone again...as well as lots of narcotics. I was meandering along in the sun wondering why my incision site hurt so much, not realizing that I had bone mets and horror!!!! brain mets. My brain must be pretty small because I have absolutely no indication of seizures or anything else that would be affecting my mental acuity (if I still have any).

The narotics are helping immensely with the rib tumors. I have about nine "generous" sized tumors in my brain - two over my optic nerves so my sight gets funky once in a while; have only had 3 instances of impaired peripheral vision - and maybe two or three headaches. All in all, I'm pretty lucky. No seizures, no seizures and the fun part is, my brother and sisters are doing slumber parties with me. It is SO SO much fun. Brother Pat looks like a 6 foot long coccoon laid out on the living room floor. We fall asleep earlier than regular slumber parties, but wake up so much earlier too and lay around talking and drinking coffee and laughing and snorting. I love my family. It's almost like mom and dad are up in their room and we're all downstairs waiting for Santa to come.

And it does seem magical. The magical part is that we're together loving each other and laughing. Surrounded by my big kids and my sisters and brother and my sibling little kids.

Life is good. God is good. I'm having a great time loving my family.

West Des Moines, IA
5:00 pm
10-10-11

Lots of drama is going on but I won't talk about it now. If you're family, you know, if you're close friends, you know...if not, you really don't want to know.

Love to all...oh, we've been eating a lot of good food and my brother is letting me use his two-seater convertible as the only item on my bucket list!!!!! I get it tonight!!!!! I'm over the moon!

Susan K

Snow in Iowa

How I long for S. Ponte Vedra Beach, Fla about now. We're supposed to get a possible 8" of snow. Then I turned on the Weather Channel and see that Chicago (Kate, Pat, Lauren and Lexy dog) may get up to 24" and suddenly Iowa doesn't seem so bad.

I've had a couple of scares from my chemo doctor this past week but have everything sorted out now and am putting it out of my mind (trying to anyway). Being scared is absolutely no way to live each day. Will start seeing my acupuncturist Wm. Terrell again on a regular basis and will figure out a great diet full of super-foods! Woe is me, I think I may have to quit my diet of Peanut M&M's. And no, Anne Marie, peanut M & M's really aren't vitamins! How I wish they were a super-food! WAHHHH.

Brussel sprouts, on the other hand....I just bet THEY'RE a super-food! And gas producing broccoli and cauliflower. Strawberry cheesecake and dark chocolate cake with fudge frosting.....NOT superfoods.

So when I was a bit scared about some medical things, Aisling and I went to WalMart and I was going to buy cheesecake and icecream, and chocolate cupcakes, and cream filled doughnuts, and powdered sugar donuts, and a bunch of junk food because I haven't eaten any junk food lately. I looked each one over, put each one back on the shelf, and purchased a small piece of carrot cake. Since it has carrots in it, I thought that could count towards my five to seven servings of vegetables! But how I wanted the cheesecake and the cream filled donuts! I can't go back in there until I grow some willpower.

I feel great, am taking a Z-pack for my cough (I've had this cough for about 3 weeks and that was one of my worries) and the medicine seems to be helping. I will be going to the pulmonary specialist next week just to check in on the Advair not seeming to work. (Oh, I did read that Advair can cause weight gain!) I got off of the prednisone and the citalopram because I can't lose this darned weight, and now find out this causes weight gain too. Ahhhhh.

I'm not taking anything right now but Vitamin C (chewable), chewable one-a-day vitamins (and believe me, I could eat the whole jar!) and the Z-pack.

Normal in Iowa --

5:26 p.m.

Another "All Clear" - Over A YEAR!!

Arleigh thinks all this is so much hot air!

My last CT scan was January 7 of this year. During my doctor's appt. on the 11th I was given the "all clear". I do have some spots she's watching: it's radiation fibrosis. Those "spots" are by the scar tissue in the left lung and have not changed from previous scans.

I must be a vain person because I am still crying over my lost hair. I know, I know, I have hair that is at least 3" long (no Rapunzel yet). Bozo yes, Barbie no. It's so shockingly curly that I can't even blow dry bangs (you know, the fringe around my face). The darned hair just keeps curling right up. My sister-in-law Nancy is a beautician (that means making people - i.e. me - beautiful) and I do have an appointment with her this week. We're going to experiment to see what can be done to make me look like a sexy bombshell instead of Grandma Standley. Yes, my grandmother was a beautiful grandmother, I just don't want to look like her right now. In 15 years I would be flattered, but right now -- WAHHH!!!

So there you have it, folks. I'm still crying the blues. Just over my hair. I realize now just how much hair can change the entire aspect of first impression.

The cough. The Advair has really helped this yucky old cough (radiation pneumonitis). Seems to have come back a little over the past three weeks. Not as bad, but a bit of coughing now and then...dry cough. The nurse called me after my visit with the "all clear" diagnosis and said one of my blood labs came back high and I'll need to redo that next week. Maybe even redo the CT scan. I'll not borrow trouble until I need to. What has Aisling (my 15-year-old daughter) convinced me of? I've been weaning myself off an anti-depressant I had been taking this past year (since I'm Miss Vim, Vigor, Voluptuous - 10# more voluptuous than previous)and don't feel the need for it. Citalapram. Awful stuff trying to get off of it. Makes my brain feel as if it's on a roller coaster while the rest of my body is standing still. A bit disorienting. I did wean myself over a month - guess it takes longer. Back to the main thread...this drug probably has skewed my blood tests according to Ling. The way I feel, I believe her.

All of you who know me know that I usually am a 6 hours of sleep person. This past month I've been setting my alarm clock! I can sleep for 10 hours. Thank you citalapram. Another side effect of withdrawal. Wouldn't you think I'd be absolutely gorgeous by now what with all that sleep? I still look like Fern Agnes. Ha ha.

All joking aside, I'm delighted and filled with wonder and gratitude each day when I awaken. I poke fun of my hair, but THANK YOU, GOD! I HAVE HAIR and curly hair (be careful what you wish for) and eyelashes and my same old eyebrows. I'm starting a new business with my daughters and am EXCITED and busy. The new improved me is coming to the surface. I can hardly wait to see what the three of us will accomplish together.

I'm not sure I was ever the cookie-baking mom, but my energies have always been focused on "momness" and now the circle is complete.

Love to all my friends and family -- JB, you have a birthday coming up next month, don't you? What, 29?





January 16, 2011
8:25 a.m.
West Des Moines - not Ponte Vedra Beach

Merry Christmas!!

I love Christmastime. The lights on the tree; the twinkling decorations that are oh so tempting to little baby hands...the smells of cinnamon baking in the pumpkin roll as well as the scents which only can be sniffed at this time of year. (It's also cowbook time; and those of you who know me know that during Christmas break, I TYPE AND TYPE AND TYPE).

I'm so excited for my kids to be home this year...I've made quicke lorraine and shrimp quiches, crepe skins and chicken crepe mix; chocolate no-bake cookies (hey, Beverly, you left out ONE ingredient - no wonder they don't taste quite right), oatmeal choco-chip cookies, Grandma Conyers' fudge, Marie Kumbina's pumpkin rolls, and will make regular chocolate chip cookies today and tomorrow will be the stuffed shells with homemade spaghetti sauce and meatballs. And last, but not least, EGGNOG! Nothing on earth tastes like homemade eggnog, with a pinch of nutmeg and cinnamon (and a bunch of rum or brandy!)

Everyone has their Christmas traditions. The Kokott's open their presents on Christmas morning. As the kids have gotten older, the "Santa came, Santa Came!" phrase doesn't sound until around 10 a.m. Wish John were here to celebrate Christmas with us. He was the Big Santa with the big ho-ho-ho! laugh. I'm sure he'll be with us in spirit.

As I look at all my children, as well as my onliest Arleigh Angel (sweet baby-girl), I see the continuation of John and Susan Kokott reflected in the eyes and smiles, the laughter and joy of my beautiful family. If I had to say what the point of my life is, it's the family we created...the family we continue to create with those we love and with whom we share our lives. Some family is blood, other family is made by shared times of joy, sorrow, confidences and conversation. Above all, family is love and laughter. I don't remember so much the times I've cried, as the times I've laughed UNTIL I cried.

From my family to yours - Love, peace, and happiness this Christmas season.




Susan K
West Des Moines, IA
12/21/2010

Will post photos when my family is home again starting on the 23rd.

Silver Bells ringing in the Snow!

I hate to admit that it's been so long since I've posted anything. Life has been exciting and full of busy-ness. My granddaughter Arleigh has been spending quite a bit of time at my now "child-proofed" house. She's almost 9 months old and is into everything she can reach...and believe me, she has a boarding house reach! (Like a Conyers.)

All my CT scans have been "NED" (no evidence of cancer) as well as my latest at the end of September. The cough was out of control (radiation pneumonitis) and the prednisone didn't help or heal...just made me gain about 18 pounds!!! Ouch (and yuck).

(As you can tell from the pic, I have eyebrows and eyelashes again...also still have a smear of blackness from my black eye under my right eye. The doctor said I'll have to go to a plastic surgeon to get rid of that dog-pulling accident! I'm not sure if it's worth it.)

Went to a pulmonary specialist at the end of October and got on Advair as well as an albuterol inhaler and "ta-da" no more cough. Also, no more excuses not to go back to work. Now that I know work is just around the corner, I'm finding so many things to do!

I'm healthier and wiser than I was last year at this time. Joyful and thankful for my wonderful friends and family. The kids are all coming home this year for Christmas since we now all live in Iowa, Wisconsin, and Illinois (no more Arizona kids). I think I'd rather go to Arizona for Christmas. First snow of the year, first shoveling of the year, and already I'm ready for summer...and more summer vacation at the beach!!!

Visited my big sister in Vancouver, WA. What a relaxing, great, motivating time. Thanks, Anne Marie.

Just wanted to wish one and all a very Merry Christmas and joyous Holiday Season.

West Des Moines

December 14, 2010

3:01 p.m.