tag:blogger.com,1999:blog-9460038941927740632024-03-13T16:46:44.865-05:00About Our MommaA Real-Time Jaunt through the Cancer JungleDenverettehttp://www.blogger.com/profile/03366099575776383622noreply@blogger.comBlogger180125tag:blogger.com,1999:blog-946003894192774063.post-27104113897700690922014-11-10T07:01:00.001-06:002014-11-10T09:40:59.718-06:00Fall (Almost Winter)Good morning,<br />
<br />
It's 5:41 am on Monday and I just woke up from a night of very deep sleep. The slumber was so deep in fact that I'm struggling to spell and type a bit, and my face is covered in tears so I can't see. <br />
<br />
I don't cry like this all the time now. But, today is your birthday. I sleep with my phone, you know. On Facebook, I saw the beginnings of a day full of wishes to you and it broke me. I read back through the last few months, the random notes, the photos from me. Yes, I tag you in photos because I just do. Does it seem weird?<br />
<br />
Ginger drew you a rainbow yesterday for a piece of birthday art. We also made a pumpkin pie, but only the pumpkin part was from scratch. She wanted to bake that instead of a cake. Don't worry, I bought lemon scones, too. <br />
<br />
I don't sleep often like I did last night. But, if I can be active enough, perhaps I'll go without waking for enough hours to keep me going during the day. <br />
<br />
Lately, I've been traveling and incredibly busy with weekday and weekend activities, and my sleep has suffered. I dreamt last night that I caught a cold from the sick woman on my flight back from Washington D.C. last Thursday. In my dream, I was more ill than last October, when I couldn't come see you for eight weeks because of pneumonia. In fact, my nose isn't dripping and I feel okay. I ran five miles yesterday faster than I have in weeks. My legs don't even hurt. <br />
<br />
I probably don't sleep because you didn't sleep, and we clearly have a genetic issue on our hands. Or, perhaps it's because most of my recent days have been spent avoiding grief. I'm not dealing with it or maybe I am, but it's unclear. I spent the summer avoiding everything and everyone and went to the pool and read a lot. I stayed near my girl every second I could. I wanted and still want more time with her. We talk about you constantly. All of her new teachers know who you are even though they've never met you. <br />
<br />
This fall has been warm and nice. I came out a bit more. I've been more social. We have garden snakes again, one in the garage. I planted about a hundred purple flowers for you early in the summer and they're still blooming. My yard probably looks like a chintzy grief garden. I wasn't sure how to plant and keep things alive. Like you, I don't read directions. I have really failed in the cooking department. But recently, a sign of hope! I subscribed to Blue Apron and while it's nice to see the portioned chicken and explicit instructions and I don't have to drive to Safeway, it's just okay. It's not enough food, basically. I need lemon scones, too. <br />
<br />
I like to think you are with me everywhere. I miss you with something I cannot describe. It's an adverb, an adjective, a verb, a noun... it's so hard to say and think. <br />
<br />
This morning I cried and now my tears are dried and I flew out of my bed to write this post. I haven't felt like writing much of anything in months, so you've triggered that once again. All that said, I'm writing a book for you, about you. The book -- it will take me a long time to finish, if I ever do -- is your story and I've been writing it for more than five years. Today is just another page or chapter. The story is now about your effect versus your illness. Recognize I said "effect" and not "affect," grammar queen.<br />
<br />
Happy birthday, momma. <br />
<br />
xoxo,<br />
TDDenverettehttp://www.blogger.com/profile/03366099575776383622noreply@blogger.com1tag:blogger.com,1999:blog-946003894192774063.post-92153482457959125852014-07-20T07:46:00.002-05:002014-07-20T07:46:26.275-05:00SummerThe other day I was at a strategic planning meeting for 2015. It was offsite, meaning "not in the office", and we went into a room as a group and discussed our work for four hours. We came out, ate shrimp and drove off in our cars for the evening. We'd talked about some of the most critical work in health care. <br />
<br />
As I drove home, ready for the weekend, I managed to carve out my space to think of her. I arrived home. We couldn't decide what to do for dinner. I walked into my bedroom and took a few moments to read my Twitter feed. I was struck by grief at that time, and it continued with me all evening. I even dreamed of my mom, and she stayed with me through yesterday and then I dreamed of her again just prior to waking up a half hour ago. I met it even though I didn't know it would be there waiting for me, in my bedroom, likely where I'd left it after dressing and exiting earlier that morning for the day.<br />
<br />
That's how it is now. <br />
<br />
This idea of carving out space inside of me is something I've been feeling since late May. My family went on a trip to New Mexico. We went back to a place that we'd spent much time together, somewhere I was likely conceived, and it was good. It was reinforcing that the grief can be met. I know now that it will never go away. It's not just a thing that eventually stops. That's what is difficult and also significant to me, as its power is how I will push through, how I will never stop remembering her final moments and how I will never take for granted her authority and goodness. <br />
<br />
I don't think about cancer. I don't think about the medical part of it. That piece -- I want to push away right now. I draw on it when I consider how monstrous of a challenge it was, and that we -- really, just she -- met it and said you will not beat me. There was a discussion about "ideal patient outcomes" at a meeting the other day, and there is a nuance and satisfaction to small victories that seem nothing but are everything. You don't know this until you live it. It's a blood test or a procedure and the results. But it's also getting on the right elevator to take the test and finding a good parking spot and the day's temperature being just right so you can sit outside for lunch in between all the shit. <br />
<br />
I carve out and I meet. I let myself cry. I meet the grief and I take it and I continue walking down the hall. Some days I just pitch it out the window. Other days, I leave it for later. I let myself wish so desperately that I could talk to her. I have let go of anger, but I'm indifferent to talking about it. I am carving out my space to be alone with it. I want to read and run and swim and do it easily without feeling tired or frayed. My daughter stops and will get teary-eyed at random moments. I will ask her what's wrong. Her response every single time is: "I miss grandma". Denverettehttp://www.blogger.com/profile/03366099575776383622noreply@blogger.com0tag:blogger.com,1999:blog-946003894192774063.post-41746346726245407422014-04-26T08:46:00.001-05:002014-04-26T08:58:20.367-05:00The hallwaySpring is officially here in Denver. I write that knowing we have a bit of snow headed our way tonight. Suddenly, the worries of winter have morphed into trimming grass and figuring out how I can get a garden started.<br />
<br />
How can it only have been a month ago that we told mom farewell? I have no regrets about the week+ we spent in Kansas after her death. Everyone came together and I carry that daily. We entered grief's hallway. It's still dark for me, and I can't find the light switch. I stumble around. Sometimes I just go to sleep on the floor with no blanket. I imagine there is a long oriental rug running the floor, and the hallway is light at times, streaming through tall windows. Mostly it is dim. It's not claustrophobic, but my chest feels pressed and I am brought back to the day mom died and I envision holding her hand while she lay in bed. <br />
<br />
I've tried every way fathomable to talk to her. I'm at that stage... having terrifically awful moments of realization that I simply cannot speak to her. I never dreamed of the angst I'd feel at those moments. I don't really address them, but take a deep breath and tuck it away for another time. Denial. I think that's the stage. <br />
<br />
I've rarely been alone since mom died. That time only comes when I am out running on the street and if I'm on an airplane traveling solo. I run several times a week. I've flown alone once in the last month. When I run, I cry. Tears stream down my face and now that it's warmer, they dry and my face feels tight when I arrive home. On planes, I sleep. I wait to talk with her in my dreams. Sometimes, I do. Those are the very best days. <br />
<br />
Habit hasn't abated. I still pick up my phone and almost hit her name on the call list. Every morning until about a week ago, I still did that. I take photos of my daughter and am tempted to text them. Who can I share them with now? I find people. I reach out at random times to folks, and have publicly shared my grief a few times outside my comfort zone. I don't know how it makes me feel about my own privacy. I just do it because I feel better afterward. I really don't care about the overshare because I want each to be meaningful and very authentic, and they are so far. <br />
<br />
I guess the lesson is that she will forever be my mother, and I will forever need her and that will never go away. I turned 37 last month, a day before we buried her. I'm an adult with an adult life (although still regularly immature). Even when she was very ill, I still needed her and she helped me. I look back and almost treasure my last thread of texts from her, the last one arriving an afternoon before she died. She was wheezing and experiencing anxiety -- two issues that never emerged until the very end. She wanted to know how a presentation had gone for me at work. She was to visit her doctor again that afternoon. That was our daily way. Every day... life centered on illness, wellness and waiting on doctor visits or call-backs state of mind. <br />
<br />
I spent the weekend with dad. Ginger and I took him to Washington D.C. with us to visit the White House for the annual Easter egg roll. We played tourists and enjoyed being plucked out of our regular lives. I was pleased to see he's looking fit. He's sad. It's got to be the hardest for him. His new puppy, Bo, arrived and takes some time. He believes they are already good, good friends.<br />
<br />
We were evacuated from our hotel one evening for a bit, an inconvenience but no big deal. We walked through the heightened madness of being in a touristy city. I love D.C. because it's a tempered version of NYC. It's right at my post-NYC, current-Denver need for speed. Besides a tiny bit of bristling on my part, trying to manage a 4-year old, we both soaked in the weekend with an openness I haven't felt in so long. He was cool and calm, and that was great to see. There is no doubt my dad's hallway is dark, but he knows how to navigate anything. His survival is certain.<br />
<br />
Today my hallway is dim, but I've figured out that even in a dim landscape, it's easier to see signs, messages and I'm more open to overwhelming feelings if my eyes can focus. In the dark, I struggle to find her but I am less afraid and more bold than ever. Denverettehttp://www.blogger.com/profile/03366099575776383622noreply@blogger.com0tag:blogger.com,1999:blog-946003894192774063.post-61342358836604157542014-03-24T20:26:00.003-05:002014-03-25T06:49:22.877-05:00MondayOn Saturday afternoon I went to talk with mom. She is buried in an area that overlooks fields for farming and some small valleys that southwest Kansas permit. It was nice and peaceful.<br />
<br />
There will never really be a way to thank everyone for their support the past week. It was the strangest of my life, but I spent it with people I haven't seen in a long while and missing my mom was a little easier because of that.<br />
<br />
Thank you notes have been sent and food packaged up. My dad is going back to work. Ginger had her Kansas birthday party. Mom had her tailgate party. The funeral was unspeakably everything we wanted. Many have asked me about a reading and a song we shared at the service, and I wanted to do the same for all of you that may have missed this special time when we celebrated mom. <br />
<br />
My brother and I spent the Sunday afternoon after mom died in his car listening to song after song, hunting and confirming the perfect one. We'd already inadvertently picked it out weeks earlier, as we sat in the front living room while my mother slept and recovered from a recent hospital visit. We drew from it that day, not knowing we'd want it so soon. But we had to be sure there wasn't something better.<br />
<br />
There wasn't.<br />
<br />
We chose "<a href="https://www.youtube.com/watch?v=Q8yLwuDi2mA">Rivers and Roads</a><span id="goog_1817081509"></span><span id="goog_1817081510"></span>" by a band from Seattle called The Head and the Heart because it tells a story about being forever in transit, always missing a person you love, traveling as far as you must to be by their side. It echoed the way our family operates, not just during my mother's illness but within our entire life frames. My mother was a good mother because she was brave enough to let us be who we are, and that meant a long-distance relationship that must have been hard for her. My daughter sang along to the tune while it played in the church. <br />
<br />
At 7 am the morning of mom's funeral I received an email from my friend and poet Shafer Hall. He and I were fast friends in NYC and he shared many good times with my mom. I was so touched to receive his epistolary poem for her that I sat in the last church pew and wept for a long while, barely able to read my phone as I read his words. I hunted Thayne down and handed him the phone. After reading the poem, he insisted that it be read aloud during the service. I agreed. So he did. Here it is for you:<br />
<br />
<div>
<i>Dear Wildcat,</i></div>
<div>
<i><br /></i></div>
<div>
<i>We are thinking of you today,</i></div>
<div>
<i>And of the soul you bring</i></div>
<i>To our wide and sprawling team. </i><br />
<div>
<i>You make us a confident team,</i></div>
<i>
</i>
<br />
<div>
<i>A happy team, and thanks to you, </i></div>
<div>
<i>We are more of a team; more</i></div>
<div>
<i>even than a team. Here is</i></div>
<div>
<i>your laughter, here your comfort, </i></div>
<div>
<i>but mostly you give us</i></div>
<i>our place to BE: our team </i><br />
<div>
<i>
Is family, our team is friends,</i></div>
<div>
<i>And with you, we can see this game</i></div>
<i>through each and every end.</i><br />
<br />
-- Shafer Hall, March 20, 2014 Denverettehttp://www.blogger.com/profile/03366099575776383622noreply@blogger.com0tag:blogger.com,1999:blog-946003894192774063.post-48975224318972412642014-03-15T19:57:00.000-05:002014-03-16T16:16:05.582-05:00Join us<b><span style="font-family: Arial, Helvetica, sans-serif;">Here are details about mom's funeral arrangements and how you can honor her:</span></b><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br />
Funeral service for Paulette Fort will be held at 10 AM on Thursday, March 20, 2014 at the First United Methodist Church in Ulysses, Kansas with Reverend Janet Hernandez and Reverend Sam Bynum officiating. Interment will follow at the Ulysses Cemetery in Ulysses, Kansas. </span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">Friends may call from 10 AM until 8:00 PM on Wednesday, March 19, 2014 at Garnand Funeral Home in Ulysses, Kansas. There are two hotels if you will be traveling overnight: <a href="http://www.corporateeasthotel.com/">Corporate East Hotel</a> or <a href="http://www.singletreeinn.net/">Single Tree Inn</a>. </span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br />
In lieu of flowers, memorial contributions may be given to the <a href="http://www.dugoodevents.com/"><b>DuGood Events</b></a> in care of Garnand Funeral Home, 405 W. Grant Ave, Ulysses, KS 67880. Checks can be addressed to PO Box 921, Ulysses KS 67880. DuGood is a 501c(3) organization <span style="line-height: 22px;">with a mission to provide assistance for Grant County residents who have chronic medical illnesses that threaten life while promoting physical fitness through running, biking and other events. </span></span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><span style="line-height: 22px;"><br /></span>
<span style="line-height: 22px;">Thank you to all of our amazing network of volunteers, <a href="https://carezone.com/home">CareZone</a> partners, staff at Bob Wilson Memorial Hospital and countless others who have done more than we could ever ask for my mom. </span></span>Denverettehttp://www.blogger.com/profile/03366099575776383622noreply@blogger.com0tag:blogger.com,1999:blog-946003894192774063.post-18641374155954215012014-03-15T07:24:00.001-05:002014-03-15T07:24:55.972-05:00FighterFive years ago, on March 19, 2009, I walked up an incline in Aspen, Colorado, with a phone to my ear. I listened, shaking, as my mother told me her doctor found a "blockage." I was irritated. We all knew what a "blockage" meant. It meant "cancer". And cancer means you are done.<br />
<br />
It was sunny and warm, a typical spring break-like Colorado day and some of my dearest friends in the whole world had flown in from New York City to ski in the best powder around. My heart beat so fast as I listened to her describe more details about this thing, and I knew what the call meant. It was a foe looking for a fight. <br />
<br />
Since then, my father, brother, husband, sister-in-law and many family and friends have gone to extraordinary lengths in this one cancer fight among too many. Five years went by.<br />
<br />
In the center was my mom, lying in scanners, sitting in cars and flying on planes, waiting in rooms while health care professionals talked, getting blood drawn, waiting three months to three months, arguing with insurance companies and welcoming each opportunity to visit with someone who came by her house to sit in the front room because she was "Paulette" -- the best mom that everyone wanted as their mom -- stepping forward and never really taking on her gloves.<br />
<br />
Nobody fights illness unless they want to live, and being a fighter is a descriptor not fit for all of us. Fighter. Think of what it means to fit that definition: you're on the front lines; you're hearing the reality of a frightening situation; you're aware of danger lurking; you're full of adrenaline waiting to win the game, willing a victory; you persevere, can't give up; you're unable to settle and restlessness befits your constant need and desire to win. It's got to be tiresome. It's got to be an ever-present quest for sleep, for the ability to close your eyes. <br />
<br />
Mom left us this morning at 12:40 a.m. We were so fortunate to be with her, holding her hands. She drew her last breath very peacefully and my only hope is that she is finally, truly resting for the first time in so long. Everyone always says their loved ones fought until the end. My momma really fought, she fought so hard and walked away from us when she was damn ready. Even in her pain, she raised an eyebrow, smirked and once opened her eyes and shed tears when my sister-in-law told her goodbye. She felt and heard our tears (for me) and our laughter. We had some laughter, too. <br />
<br />
We will have details about arrangements tomorrow. For now, thank you for being part of our life. <br />
<br />
- Greg, Taryn, Matt, Thayne, Jennie and GingerDenverettehttp://www.blogger.com/profile/03366099575776383622noreply@blogger.com10tag:blogger.com,1999:blog-946003894192774063.post-84727657279242118642014-03-08T08:36:00.002-06:002014-03-08T08:36:19.109-06:00These daysMom is hanging in. I got to spend several days last week with her, and it was like gold.<br />
<br />
Every day is different. She runs fevers most recently, and we're unsure if she's battling (and recovering) from viruses or something else. Her hair is a short buzz of grey; it's quite appealing if you ask me. Hours spin around naps, eating and drinking her G2 for hydration.Who ever put so much weight (no pun intended) into appetite? I do.<br />
<br />
Lots of people from the past and pockets of life are emerging and coming by to tell mom who she is for them. She loves that (in short doses). Visitors walk in day and night. Volunteers drop off food. We discuss what to make for lunch and dinner. We discuss grocery lists. We talk so much about food, it's no wonder our lives revolve around it. We feed the squirrels in the backyard. We plan a quick drive for an ice cream cone. We let her wander back to bed and try to walk and talk quietly around the house so she can drowse. We lock ourselves in the basement around the giant round table and do 3-year old art. We read the paper and I am sent out to get the sweet deals at the grocery store or somewhere else. We do puzzle after puzzle. We stay in pajamas all day. We sit near her bed or perch on the sofas and talk and watch.<br />
<br />
Hospice continues to visit during the week and we have a treasure in our family and friends, who have constructed a 24-hour schedule so mom is never alone.<br />
<br />
She kept us late on Sunday and wouldn't let Ginger and I return home in a snowstorm. We opted to drive home Monday morning. It left us with a bit of time to descend downstairs and watch the Oscars, commenting on fashion and who still looks great in Hollywood. We debated Jared Leto's long hair and I reminded both my parents how I devoured his most famous short-lived TV show as a high schooler (um, and as an adult). She didn't approve.<br />
<br />
We talked about New York, a place we have great, robust memories of -- a place she navigated better than I, a long-time resident, and where mom walked freely and understood and valued its beauty. She's still feisty, my mom, unabashedly sharing her thoughts and dismissing most of the hullabaloo we let entertainment and our lives be. It was nice.Denverettehttp://www.blogger.com/profile/03366099575776383622noreply@blogger.com0tag:blogger.com,1999:blog-946003894192774063.post-1832226488312468832014-02-15T07:48:00.003-06:002014-02-15T07:48:50.873-06:00Never too much of a good thingIt's been over a week since mom got out of the hospital. Since then, she has returned to a better place and with the aid of 24-hour care through family and volunteers -- she has had several "good" days in a row. As her liver deteriorates, everything that usually processes through the liver is having to find alternative routes, such as the kidney. Inevitably, bilirubin and ammonia levels are increasing all the time. Our method of treatment day after day is to get that stuff out of her system. These basic malfunctions cause disorientation, fatigue, itching and all kinds of other unpleasant side effects. It's not really the cancer that's going to break it all down. It's the effects of tumors blocking everything. <br />
<br />
Last Saturday, mom was well enough to join me on a trip to the grocery store. We moved slow. But, she enjoys getting out and I'm certain she needs some interaction like that to stay afloat. It was quite a change from lying in a hospital bed with an IV. <br />
<br />
It's really important that I convey how grateful my family is for the community and family support. We have more volunteers than I remember having at a national non-profit I used to work at, and while it's very difficult to ask for help, we are met with response that makes us wonder why.<br />
<br />
I've spent more time in my hometown the past few months than in years combined since I left in 1995. I've been reminded of other times in my life, borrowing an old pair of long johns or wearing an old jacket from my closet for an outdoor run. I've scoped out and re-read books I read dozens of time in my youth. I've run perimeters and re-discovered pockets of town that I like jogging through better than others. I've sat working remotely from my laptop, looking out on my parents glorious back yard -- the epitome of outdoor living in the summertime -- and yearned and nearly begged for winter to be over. I've stayed in pajamas until 2 pm. I've visited old friends who give me reprieve and wine and good conversation. I'm dying to go back to the old movie theater. <br />
<br />
There is a baseline of kindness and fortitude in this small town that I'll never find in my next door neighbors living in a metro area. (I don't even join them for a beer much less a cup of sugar.) It's humbling. I feel less nervous when I drive away on Sunday.<br />
<br />
Thank you for everything. I only hope that we can sometime repay you. Denverettehttp://www.blogger.com/profile/03366099575776383622noreply@blogger.com1tag:blogger.com,1999:blog-946003894192774063.post-57517827920900892592014-02-04T20:33:00.000-06:002014-02-04T20:33:11.823-06:00TuesdayMom got out of the hospital earlier today. She was admitted on Sunday after experiencing severe disorientation. Thayne and I spent the weekend at home with her and my dad. First, I thought we wore her out (and we probably did that too), but when she didn't get up on Sunday morning we knew perhaps she'd taken a turn. Mistakenly, we returned to Denver, leaving my dad alone with no other help all afternoon. Thankfully he knew what to do, and my aunt and uncle helped. <br />
<br />
Thayne returned home yesterday. I'll likely join in a couple days again depending on weather. Mom now needs 24/7 care in addition to whatever hospice can offer. The key is not leaving her alone, so we are juggling and trying to work out a calendar that coordinates around all of our schedules. And, poor mom is in the center feeling frustrated and crummy. She received excellent care at the local hospital and my brother -- we spent endless time on the phone these days -- stayed overnight with her last night.<br />
<br />
I'm setting up an online calendar that offers a daily journal for recording her food/liquid intake and some other stuff so we can coordinate her care.<br />
<br />
We're off. The roller coaster is on full speed. Again. Denverettehttp://www.blogger.com/profile/03366099575776383622noreply@blogger.com0tag:blogger.com,1999:blog-946003894192774063.post-81786484089259253102014-01-19T09:28:00.000-06:002014-01-19T09:28:02.632-06:00Here comes the sunYesterday, I went out on a run, alone, bundled up and glad for some time to think. <br />
<br />
I ran my best mile in a year, according to my Nike app. Then I ran another. I kept going and nothing hurt. I listened to an album I've had on repeat for two months straight. Then I listened to it again. <br />
<br />
I wanted to get home, but kept buying myself time. It struck me that I'd spent the morning fussing over my daughter who wasn't feeling well. We'd sat side by side. I would write words on a drawing pad. She would trace. <br />
<br />
She gets that words spell "something". Over and over, I wrote her name. She'd trace it. At one point, I absentmindedly responded to her request to write my name. I wrote: "Taryn".<br />
<br />
Ginger didn't like that and immediately responded tantrum-like (and sickly feeling): "that's not your name, mommy," she screeched." IT'S MOMMY."<br />
<br />
I'd pissed her off and she was right. To her, I <em>am</em> mommy. (I also have a number of nicknames.)<br />
<br />
The hardest part of cancer right now is balancing being a mom, a full-time working professional and being a daughter. I constantly feel guilty and wonder where the room for improvement might be. I'm utterly Type-A, a perfectionist always a bit underwhelmed with the results because I know it could be better with more time, more thought, more revision. I don't know when to turn it off or when the boundary bent itself so I could cut myself slack. I make the wrong decisions in my personal life because I can't make them in my professional life. But is that right? Some days, I get it all wrong and others I get it right. <br />
<br />
Even without cancer in the equation, the person who resets my clock is <em>my</em> mom. I call her to bitch. I call her to vent. She listens. She's good at that, you know. <br />
<br />
While my life is wildly different than hers, especially today, she always knows the next right turn I should take. So when I try to fill in if she's not feeling good, I never know if I'm angling in the right direction. But a few months ago a colleague of mine told me it's okay to be unsure of your decisions because nobody ever knows what they're doing all the time. Is that the secret, coupled with decent priorities? <br />
<br />
Anyway, I missed my mom this week a lot. The good news is that she's feeling okay and her vitals are stable. Her hair is growing back into a cute buzz cut, all grey. My dad is feeling healthy and yesterday he was making her wooden hearts to replace her front-porch Christmas trees. It almost feels normal. A normal cancer life. <br />
<br />
I'll wrap this up with a little bitty shout out to a special friend down in Houston who is living her own normal cancer life and truly fighting like a boss. She fights like my mom and leaves no stone unturned, finding and taking every chance and option there might be. <br />
<br />
This week, she got some shitty news, yet reached out, reminding me of this cancer journey we've had in parallel lives. She mentioned yellow Fridays and I remembered how we'd get yellow manicures and wear the yellow on Friday for my mom, and we've lost sight of those because... I don't know why. I guess because I was afraid there wasn't a fight anymore, but I am wrong about that. There's a really important fight we have to engage in, and it's every day, all the time, every second. I guess it's the normal of living a cancer life. That's what our life is, for far too many of us. So I hope that we can bring the yellow back. Can we? Denverettehttp://www.blogger.com/profile/03366099575776383622noreply@blogger.com2tag:blogger.com,1999:blog-946003894192774063.post-79768801538983783632014-01-12T07:34:00.000-06:002014-01-12T07:34:21.385-06:00SundayI didn't get to FaceTime with mom yesterday but word on the street is that she's still on a neutral plane and feeling okay. Fatigue sets in not long after she gets too active, but nonetheless we're glad for this streak improved health. Not much of an update, but thankfully there isn't much to report on. Denverettehttp://www.blogger.com/profile/03366099575776383622noreply@blogger.com0tag:blogger.com,1999:blog-946003894192774063.post-33855191050016416502014-01-08T14:21:00.001-06:002014-01-08T14:21:27.779-06:00Hump dayI was thinking about one month ago, in nearly mid-December when it felt pretty awful to get up in the morning. One month later, we have mom completely ingrained with hospice and she has improved -- markedly. I happen to work in the healthcare sector and yet knew nothing about hospice, which has helped in managing so much of the daily "stuff". Terrified at the thought of "hospice" or "palliative care", I had no clue what to expect. I think mom has just gotten stronger over the the last few weeks, as well. It doesn't change everything. It doesn't mean we go back to Mayo. It doesn't mean we re-examine chemo. Those decisions are made, but I didn't know a patient could improve as a result of hospice and I'm pleased that mom is responding well.<br />
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Sleep is a precious antidote, and we are being given the gift of time. I didn't think we'd get it, not with our luck. But we are. Denverettehttp://www.blogger.com/profile/03366099575776383622noreply@blogger.com0tag:blogger.com,1999:blog-946003894192774063.post-5053047588524348032013-12-29T10:55:00.003-06:002013-12-29T10:55:57.698-06:00SundaySorry for the delay in updating on mom. She's feeling pretty good today after a night of rest. A week full of holiday was a lot, but she did enjoy seeing everyone. I think she's looking forward to visiting more people one-on-one soon. Thanks to everyone who has written letters and sent cards, they are astounding and heart-felt to read. Denverettehttp://www.blogger.com/profile/03366099575776383622noreply@blogger.com0tag:blogger.com,1999:blog-946003894192774063.post-4598756122067130722013-12-19T21:34:00.000-06:002013-12-19T21:34:23.086-06:00ThursdayI haven't had the heart or energy to write this week. I'm more clear-headed, but surely teetering and feeling like a yo-yo. I'm grateful for my work colleagues who have given me expert advice and support like I've not felt before. It turns out that, unlike motherhood advice, I actually value hearing the experiences of others dealing with chronic illness. Guess I'm in the right sector.<br />
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All that said, mom has had a good week. She spent time with family and has been on her feet a lot. Today, she met her hospice nurse, who has surprisingly dealt with cholangiocarcinoma patients twice. I hope some sleep is on the way... That seems to be mom's fuel.<br />
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Thanks, as always, to everyone checking in. Mom still isn't ready for lots of visitors and is banking her reserves for next week when we invade. My guess is were in good shape if she gives us a curfew.Denverettehttp://www.blogger.com/profile/03366099575776383622noreply@blogger.com1tag:blogger.com,1999:blog-946003894192774063.post-35659013880982228882013-12-15T21:33:00.000-06:002013-12-15T21:33:02.806-06:00SundaySunday night, finally. So glad the week is over. After all the crappy news, we were rewarded with a wonderful weekend with mom. She rested and -- with the exception of Friday -- she felt like and acted like herself. I was glad to depart today knowing she intended to bake and that she insisted we have breakfast (made by her, not us). We learned a lot about hospice, and are hopeful that it will make her comfortable, sleep and add a much-needed layer of support. We had more affirmations from Mayo. I think we had "the conversation" with the experts and it's assured that we've left no stone unturned. With hospice, her strength could grow and it seems we might have a small chance of a little more. There are generous resources everywhere, and that feels good when the night comes and we can't wander off into dreams because we're frightened of or sad about the future. Denverettehttp://www.blogger.com/profile/03366099575776383622noreply@blogger.com0tag:blogger.com,1999:blog-946003894192774063.post-27478998254120702992013-12-13T20:29:00.001-06:002013-12-13T20:29:09.638-06:00The not good news post<b>The news.</b> Well, I guess it's time to get this published. I've been delaying and not wanting to write the awful news we have to share, but my mom is incredibly lucky to have a supportive community and network of people like you -- and "you" are anxious, curious and wondering. <br />
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Hospice is being set up for mom. We will not pursue any further treatments beyond that, and we hope it will align with the need to symptomatically treat the continuing and growing elements of liver failure. <br />
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The treatment that mom underwent in October did nothing (except make her more sick), and the cancer continues to grow. Over the past days and weeks, she has declined and we -- and the many healthcare professionals we work with -- agree that it's time to focus on keeping mom comfortable, hydrated and let her live the rest of her life as she wishes. <br />
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We are heartbroken. <br />
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My brother and I returned home to be with our parents yesterday and have slowly been processing this information and are beginning to set up a new framework to take us forward.<br />
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In many ways, we have been preparing for this the past five years. Everyone says they have the opportunity to be ready for the last stage when dealing with a long-term, chronic illness. But they also say that the realities of where you land when things really get bad are always hard to stomach. And, that's where we are. <br />
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<b>Right now.</b> Mom has had a good day today, although she's in bed most of it and very tired. She insisted that Thayne and I sit with her last night as she lay wrapped under blankets and listened to our banter. It was nice, and I have been rapidly reminded of what a great cohort we are, the four of us, in our small family unit. We talked about the things we talk about and that's what we're doing moving forward: bringing the banter back, giving her what she needs and listening. <br />
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<b>What can you do?</b> Mom isn't really up for visitors right now, but maybe in the coming days. I know that many of you are at a loss and want to help, but don't know what to do. My recommendation is that you send mom a letter. Tell her why you love her and what an impact she's made on you. I can't keep my phone charged or my email inbox clean from all of the people asking, wanting to know how she is. Don't be afraid of her now. Tell her and do it in a way that allows her to read it or hear it at her leisure. She doesn't have much strength, and talking at length and having people come by takes a toll. We have a core group of people helping us daily and their support is not only needed, but it's imperative to her staying with us. <br />
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Please <a href="mailto:taryndawn@gmail.com">email me</a><a href="mailto:taryndawn@gmail.com"> directly</a> if you'd like to reach mom, and I promise to respond and figure out a way that you can reach her. Denverettehttp://www.blogger.com/profile/03366099575776383622noreply@blogger.com1tag:blogger.com,1999:blog-946003894192774063.post-22368885842365894622013-12-09T21:41:00.001-06:002013-12-09T21:41:18.279-06:00MondayIt's Monday. Mom had a somewhat rough weekend, but is feeling better. Thanks to everyone who chipped in to help over the past few days. It's been stressful and worrisome for all involved. I chatted with mom tonight. She was preparing sausage and sounded good. I finally talked to a different oncologist at Mayo. He sent mom's scans onto radiology -- after sitting two weeks. Sorry to say it but Mayo has been a challenge this time around. We are hoping for some news tomorrow.<br />
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Fingers crossed.Denverettehttp://www.blogger.com/profile/03366099575776383622noreply@blogger.com1tag:blogger.com,1999:blog-946003894192774063.post-41099064849817709982013-12-02T18:24:00.000-06:002013-12-02T18:24:10.994-06:00TurkeyWe had a really nice, relaxing Thanksgiving this year. We just showed up, which is eternally easier than hosting, but my lovely aunt Deb and uncle Brad fixed a wonderful dinner and we spent the day at their house lazing around and chatting. It was one of the best holiday's I can remember. Mom got tired, but she just went to sleep for a bit that day. On Friday, we took Ginger to see a movie and got out of her hair so she could rest more. Saturday, we fled the compound and returned home. <br />
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Everyone keeps asking about when we'll know something about anything, and the answer is that I don't know. We could hear CT results anytime, but depending on that news, we could end up doing anything -- even nothing. Mom will travel to and stay in Denver for a bit this month and take advantage of her improved health for now.<br />
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Every moment at home is great, yet it's hard not to wonder what it all means, if we should be doing things differently or trying something new just to do it. I'm not sure that's our mantra anymore. I'm thinking it's more along the lines of enjoyment and relishing and paying dues for eating too much instead of adhering to the diet or listening for the phone to ring with a doctor on the other side.<br />
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Mostly, I was grateful to stand next to my mom, readying ourselves in a bathroom mirror as we did for years and years, commenting on makeup or asking where the hair dryer is and wondering if the lip matches. We ate a little later in the evening and snacked too much. We stacked it on my dad. She reveled in the grandchild. It's thankfulness by nature, but really just simple and without feathers or fame. Denverettehttp://www.blogger.com/profile/03366099575776383622noreply@blogger.com1tag:blogger.com,1999:blog-946003894192774063.post-16357684730905271792013-11-26T21:36:00.000-06:002013-11-26T21:36:09.534-06:00TuesdayFinally, a holiday has nearly arrived and we can spend a bit of time together. Mom continues to feel better and regain strength. Still no word -- nor do we expect any this week -- on CT results. Perhaps it's good to not expect news the next few days. The past four months have worn us all down, and we look forward to a quiet Thanksgiving. Thank you all for continued thoughts and checking in.Denverettehttp://www.blogger.com/profile/03366099575776383622noreply@blogger.com1tag:blogger.com,1999:blog-946003894192774063.post-10163088239899843112013-11-21T22:10:00.000-06:002013-11-21T22:10:09.791-06:00ThursdayMom seems to be having a good week. She had a CT scan today. We wait for news. She got new glasses and texted me a new selfie.<br />
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Looking forward to some time at home with her next week.Denverettehttp://www.blogger.com/profile/03366099575776383622noreply@blogger.com0tag:blogger.com,1999:blog-946003894192774063.post-56858357811397642432013-11-16T08:33:00.002-06:002013-11-16T08:33:24.200-06:00SaturdayMy mom grew up in a small town called Ellis in northern Kansas. Her mom and dad lived in a small house on the edge of town, which was a quaint little place I enjoyed for its 1950s allure and German food smells.<br />
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Rather narrow-minded as a child, I wouldn't touch goulash or sauerkraut or radishes or homemade pickles until well past my youth. Instead, I learned about things that only kids can be influenced by and remember in our own internal films. <br />
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I wandered across the bridges overlooking small creeks and distinctively recall starting to wonder about photography and light during a Thanksgiving trip when I watched ducks gloriously stream down the water.<br />
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There was a small fish pond with big goldfish. My mom took me and my brothers there. The bowling alley pizza was nearly a German deep dish and we could walk a short distance to retrieve a pie. There were older gentlemen sitting at the bar drinking dark stuff, their wrinkly faces chugging cigarettes and hard hands gripping small tumblers. Everyone smoked. We ate potato soup at a diner right off I-70, which you could see from my grandparents living room windows. Once, a tornado hopped across the massive highway. Another time, my mother remembered 13 tornadoes in one night. Much of the local art carries an essence of tornadic activity; in fact, an inherited birdhouse sits on my mother's porch with a tornado fashioned of barb wire fence. My mom will stand on the lawn and watch funnel clouds circling, unafraid. So many she has seen.<br />
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A few miles away is an all-American city called Hays, where my parents met on a blind date while attending the university. My father famously, of course, called her ahead of the date to request her liquor of choice. Bourbon. Everyone knows that. He picked her up. She thought he was stoned, but he wasn't. His eyes are always red. He wore the same outfit every day: a white t-shirt, jeans and sandals. My dad is a leader, as you all know, but she took her time deciding if she'd follow. <br />
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My mom learned how to cook and bake in that house in Ellis. She was a bowling champion (and can still smoke you). She pranked her brother. She went to Catholic school. She behaved herself. A little dog called Cricket ran around for what seemed like a hundred years nipping her little feet, and then mine, too, another hundred years later. <br />
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Mom had a good week. She had her eyes examined and got a flu shot. She sent me a selfie. She scolded me on the phone for something or another. She has an appetite. She asked about my upcoming work trips. She told me to have fun at a happy hour with a good friend. She signed up for a weekend in Denver and we will take Ginger to her first real ballet together. <br />
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And as I wistfully think about all the parties I missed in New York City last night--because you all know they were awesome--I sit on my bed with a laptop and my little daughter next to me and think about my mom and hope and wish for her that she enjoys the day with my brother. Denverettehttp://www.blogger.com/profile/03366099575776383622noreply@blogger.com1tag:blogger.com,1999:blog-946003894192774063.post-48658460279930172912013-11-11T19:55:00.001-06:002013-11-11T19:57:05.541-06:00Sunday to MondayIt's her birthday.<br />
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Well, it was. Yesterday, mom turned 61 years old. Ginger and I got to make her another pathetic Sunday breakfast. I'm definitely not her when it comes to the food creation.<br />
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She wasn't feeling great this past weekend, but we managed to get out a tiny bit. We're ready for mom to bounce back to her feisty self. I'm sure she will, just not yet.<br />
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We brought her a small collection of new hats and mostly--I think--she just wanted that little girl next to her. Even if she wears her out.<br />
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<br />Denverettehttp://www.blogger.com/profile/03366099575776383622noreply@blogger.com1tag:blogger.com,1999:blog-946003894192774063.post-59986438062263218872013-11-06T20:55:00.002-06:002013-11-06T20:55:49.984-06:00WednesdayThe last two days I've talked with mom--and it's been normal! We argue a little, debate, wander off into conversations about Ginger and mostly she scolds me about this and that. The whole discussion centers on when we'll see her next. It's such a relief. And, yet we know there are little curves hiding within the phone lines between us. Cancer is day by day. That's all there is to it. Denverettehttp://www.blogger.com/profile/03366099575776383622noreply@blogger.com1tag:blogger.com,1999:blog-946003894192774063.post-33293846862960796032013-11-04T09:57:00.003-06:002013-11-04T09:57:39.511-06:00MondayMy apologies for intermittent posting the last few days. All is fine and mom is really improving with regard to the respiratory infection. Her rules to me about much needed rest are benefiting, but it's hard to tame her. We facetimed yesterday. She and Ginger talked a lot about the Patriots (or the "Pastries," as Ginger calls them). I'm hoping as we enter yet another week, mom will continue improving and perhaps we'll squeeze in a little pre-birthday visit. If only I got miles for driving to Kansas. Can someone work that out for me?<br />
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<br />Denverettehttp://www.blogger.com/profile/03366099575776383622noreply@blogger.com0tag:blogger.com,1999:blog-946003894192774063.post-18368091312246885582013-11-02T09:12:00.001-05:002013-11-02T09:12:15.371-05:00Wednesday through SaturdayMom is still working a nasty cold. Ugh. She won't agree with me, but our short visit home took its toll. I've encouraged her to simply stay in bed and rest. No more shopping. Cut back on visiting with folks for too long. Go off the grid a bit.<br />
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She even agreed that another visit this weekend would be too much, so we'll likely push it out another week.<br />
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Mom is scheduled to have a CT in mid-November. Mayo will assess whether the chemoembolization was effective or not, and determine if she can have another. <br />
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Thanks so much for your kind thoughts, emails and texts. We are ever so grateful.<br />
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P.S. This is a post from Wednesday that didn't publish. Blame the iPhone.Denverettehttp://www.blogger.com/profile/03366099575776383622noreply@blogger.com0