Posted by: Teri Simon | 2012/05/06

Disappointment Galore…..

Good evening, my friends.  I know your interest is piqued by today’s headline, and I’ll get to that in a minute, but first, I beg your indulgence as I offer up some thanks.  I used to be known as The Queen of The Thank You Note, but on the top of my disappointments list is the fact that I do not get around to writing notes like I used to anymore, and when I have the opportunity, more often than not, I don’t have the stamina.  Since my hospitalization a few weeks back, I have been the recipient of some spectacular caring gestures, and I’m going to publicly thank as many of you as I remembered to write down, asking your forgiveness for not getting a note in the mail:

Top of the list is my brother, Sam, who comes in to visit me and care for me and mother-hen me as often as he can.  In fact, he’s coming back in next weekend, in time for my CT scan next Monday, and the decision as to whether or not I can continue in the immunotherapy clinical trial.  Sam takes caring to a whole new level, caring for me and for my kids, making sure I take good care of myself, and I do mean GOOD.  I am grateful beyond words to have such a caring brother!

My sister, Tami, checks in via text pretty much daily.  She sends up prayers on a very regular basis, and worries as only an older sister can.  I’m grateful beyond words for her, too!

I thank Reeta, my parents, Kim, Julie, and Felice for making sure there’s plenty to eat in the Simon House.  The food goes beyond yummy; it is food for the soul, for the spirit, and for the heart.  My fridge runneth over with tasty treats, and my heart runneth over with joyful gratitude!  When the time comes to create a meals calendar, y’all will be first on the list for coordinating it and for supplying the yummies!

I thank Wade and Blair for the awesome elephant block print, Susan and her family for planting a tree in Israel for me, Patti, Anne, and Ann for their visit and the HUGE bouquet of carnations (wink ;)), Joanie for the visit and the chocolates, Amy for cleaning my house just ’cause, Kenneth for the visit and the great butterfly book, and Helana for spending a day at my beck and call.  I thank Teri (and Ronnie, Mike, and crew) and Aryia and Danny for yard and lawn care, above and beyond wildest dreams and expectations.

And as always, I thank Lisa, my BFFAEAEAE, and my exceptional children, Emily, Taylor, and Joey, for EVERYTHING from rides to appointments to head-rubs to coming over just to toast me a bagel.  Y’all keep me going and going, and I cannot begin to thank you so very very much!  If I haven’t singled you out by name and I should have, I beg your forgiveness.  And to all of you, my deep gratitude for your continued prayers and good thoughts!
OK, so let’s talk a little disappointment, shall we?  Cancer is a lot of things, and one of the most prominent ones is disappointing.  At any moment, life can change on a dime, and it typically does.  No sooner do you figure out how to roll with one punch, you have to figure out how to roll with a punch of a different kind and strength.  Lately, I’ve had what I think has been more than my fair share of disappointment.  Every time my protocol changed, I was disappointed.  This new clinical trial was supposed to not make me feel lousy, but yet, lousy is how I’ve felt.  Nausea and migraines and exhaustion have been my constant companions.  Of course, maybe that’s from the radiation treatments, or from continuing to have to have my lung drained (had to have it done twice last week alone), but I don’t feel well, and I’m kinda sick of it.  It disappoints me that I can’t do what I typically do, like laundry and cooking and sometimes, like last Tuesday, walking.  (Needed a wheelchair at the hospital to get down the hallway for an x-ray.)  I was supposed to have gone to Washington, DC, to participate in the LUNGevity Foundation’s HOPE Summit this past weekend; couldn’t go.  Spent the weekend recovering from fluid drain on Friday and radiation, and today, well, I’ve pretty much been a total couch potato with no energy to do anything except occasionally go to the bathroom to throw up.  IT SUCKS!

So many days, I want to scream, “I WANT MY LIFE BACK!  I WANT MY HEALTH BACK!”  Each time the urge hits me, I’m swift to remember that those things are not coming back.  My life is what it is now, in the Land of Lung Junk, changing on a dime, and making things difficult and sometimes scary and sad, and usually disappointing.  I am tired of being disappointed, y’all.  Sick and tired of being sick and tired, and bummed out that it doesn’t look much like things are going to be on the upswing for me any time soon!  Grrr!!!

In my household, the kids and I have long lived by the 24 Hour Disappointment Rule:  when things disappoint you, you get 24 hours to wallow in your self pity.  Then you have to make a plan on how to dig yourself out of the hole.  I have broken that rule a lot lately. Yes, I count my many blessings, but it is not as effective an exercise as it used to be for me.  And I’m asking you, seriously asking you:  how do YOU handle disappointment, and what advice do you have for me?  Or maybe I just need the affirmation that my disappointment is justified and understandable.  I don’t know.

I’ll truly look forward to your heart-felt replies, and I wish you a week for no disappointments!

Much love,

Teri, the Disappointed Flying Elephant

Advertisements

Responses

  1. still on my knees in Florida

  2. Teri- Unfortuneately your disappointment is understandable. I only hope and pray that all of the wishes, support, and love that everyone is sending you can scare your cancer into remission. I know I’m naive but we are all praying for your highest good. Your writing is uplifting and educational for many people.

  3. To my friend, Teri!
    Honstly, I think the word ‘ disappointed’ is something of an understatement. I think you get something stronger. Like ‘this just sucks’ or maybe even something stronger than that.. But for someone who has known that rules were sorta meant to be broken, you have more than the right to break the 24 hour rule if you want. But while you’re breaking the 24 hour wallow rule, I hope you noticed that the moon is huge, the heavens are opened and G-d is listening. Sending love and hugs for way beyond the next 24 hours. Amy

  4. Sad face from me. Managing this kind of disappoint- I don’t think there is any advice for that, nor do I think it can be managed. I give you the freedom to just be as pissed and disappointed as you need to be for as long as you to be (no more 24 hour rules). I am praying that we can lift you up through the disappointment so that it isn’t quite so difficult. Wish I could carry you on my back my friend.
    love

  5. Teri:

    Another vote for ignoring the 24 hour rule. You’ll know when you’re ready to put that feeling behind you — and you’re still our favorite Flying Elephant, friend, volunteer example par excellence, and tough cookie. We love and honor you! Marti and all the Rosenbergs

  6. I remember you telling me about the “24 hour rule” and thinking it was a really good rule. The rule allowed one to experience disappointment, sorrow and grief, no matter the cause. It was nonjudgemental as to whether or not the disappointment was justified by someone else’s standards. Yet it then encouraged you to pick yourself up and put one foot in front of the other the next day. I think there are certain things in life that pull for rule modification. The intensity of your disappointment is such a heavy weight to hold so I think it would feel relieving to be able to make it go away. The above responses resonated with me. No one has an answer about how you might handle your disappointment. But those of us who care so much about you and your family want to hold it with you and support all of you. It is justified. It is understandable. And you are an amazing woman and an amazing mom.

  7. bravo, taylor, well said. the world took a vote and teri you get to break the 24hour rule. we know you won’t though!

  8. Dearest Terri,
    Dealing with cancer is beyond anyone’s understanding. As a cancer patient, you must give up so much of yourself. Suddenly, we find our children to be our caregiver. They become the parent and we don’t like it! We become dependent on our kids, siblings, neighbors, friends, and the list goes on, and deep down we don’t like it! Though we are grateful for all the love.
    When I was in your shoes, I refused to allow cancer to take everything from me, and yet the fight some days became more than I thought I could bear. In reading your blogs, you also have fought back against this disease with everything you have. I believe you have given cancer a run for it’s money!
    Lady, you are an inspiration to many. You have used this disease to ‘teach’ others what it is really like in the day of a cancer patient. You have truly made a difference in this world in ways you may never know. During your journey, you have constantly made sure that everyone was okay with your illness. You have been more concerned with how you are going to get others through this. You have taken care of us!
    You have so many around you who are willing to pick up and keep you going. When you say you are blessed, I know you truly mean it and feel it. God has worked in your life and has used your life to touch others.
    In this blog, you share you are becoming tired and disappointed. You want suggestions how to deal with it. I wish I had the magic answer. But more so, I wish I had a cure. So you could have your life back. The way it was before the big C. So you would have control of your daily activities again. I have neither. And I am very sadden I can’t help. But I can offer more prayers. And I can offer you this, it is okay to not be the strong one today. It is okay to cry and feel bad for yourself. It is okay to feel the disappointment and embrace it. It is okay to get angry at cancer. So I guess with all being said, how I deal with disappointment, is to really get to the bottom of just what it really is. Not the stuff on the surface that everyone can see, but what is really eating at me. The disappointment that I feel I can’t say out loud because someone might think I am giving up. The thing that I feel if I don’t say it out loud, it won’t be true. The disappointment, or fear, that I just keep pushing back down into the pit of my gut.
    At the end of the day, you are still loved and admired, even when you have a bad day! If it takes you longer than 24 hours, that’s okay too!!
    Still on my knees in Florida
    Tina (Leary) Detweiler

  9. Your disappointment is justified and understandable. Your disappointment is justified and understandable. Your disappointment is justified and understandable. Truly. I have no words other than those of the powerful love and gratitude that I have for you, my sweet friend.

  10. Teri, I pretty much agree with what everyone has written, and I feel you have every right to feel as you do. Re: disappointment — this sounds a little crazy but at a certain point it’s clear it is what it is, no more, no less. You are one of the bravest persons I have known and you have touched so many people. You may not have the health you want but you have wholeness and integrity and a lot of people rooting for you.

  11. That 24 hour rule has been instilled in me since I was very very young. And today I find it difficult and frustrating to watch others wallow in their self pity if something small happens like a break-up or a bad grade etc. some people really need to put their big-girl panties on! But you, mom, are allowed to break the rules; you made them! This isn’t small stuff, it’s some of the hardest junk anyone can go through. Just from last year’s fiascoes alone, I have no idea how you’ve managed to stay so positive for the majority of this journey. You’re an inspiration 🙂 I love you so much!

  12. i am disappointed too in reading your recent blog. my only port in the wild storms of disappointment is to pray. i am always amazed at the wonderful way you handle all that has been given to you. you are one of the most incredible women i know and feel so blessed to be in your circle of friends and supporters. my prayers are continuing for you and yours. with my love, patti

  13. Sorry about that. Teri we all feel disappointment because we can’t take it away. I love you and am praying. Tommorow will hopefully be a better day. Mucho hugs.

  14. Teri your disappointment is justified. You deserve to feel that way so don’t you worry about it. You are doing the best you can under the circumstances. I know you are probably doing better than I would and alot of others. You are so very strong and youi are doing nothing wrong NOTHING. For encouragement, stop and look around. You have soooo many people
    le that love you, you have tried to help people ev
    en though you are a very sick lady.

  15. Yes, my friend, you are justified in your disappointment and it is understandable. This just is beyond “it sucks”. To honestly answer you: for me after I am disappointed and have thought it through, I find whatever can distract me. I daydream (or meditate) in my head if I am not able to be physical…as deep as I can go. But my dear, this for you is so constant that it is beyond disappointing. I have never had a chronic illness. So my suggestions are naiive. I have only cared for my mother when she had hers. I have witnessed others in the fight. You remind me so much of their struggle to keep positive and grab laughter and watching others around them. Unfortunately, fear and disappointment is the human nature, too. I see you recognize it and then face it with love for those you are in contact with; anxious to know what others are doing; laugh at every possible moment; writing to help more than yourself; and fight. You have done all that; leaving us in awe. I hate knowing you are going through this. I hate, hate hate it. I also love you very, very much! Thank goodness you are surrounded by so many to help with the daily tasks. You have a strong faith and it will carry you through this, too. I have heard this echoed many times, by the way, from those wise role models. That this faith/belief is what pulled them through no matter where the journey led. I pray, too. I pray for you and yours. You let me know if there is more that I can do. Roy and I are both still here for you, my dear.

  16. I so wish that you were healthy again. Disappointment and loving concern I can share with you. You are feeling a type of disappointment that many of us are lucky to have never felt in quite this way. My significant other lost his wife to pancreatic cancer just shy of 50 years. He lost a son to an asthma attack at a mere 28! Life sucks but we renew and move forward. Know that you have touched many lives and that there are so many that love and like and respect you. I admire you for so many things that includes looking into the face of this with such determination. Divorce was horrible but I looked ahead to a new day. Cancer sucks. I am renewed by your thoughtful and heartfelt words and your ability to write so well at a sucky time. xoxo, Laura

  17. We all handle things differently and you, my friend, are amazing!
    I think about my day today with lots of dissapointments: I got rained on, (twice), had someone show up late for an appointment (annoying) and had a couple of fussy kids whine about the rain on their day off & how “Boo” the cable & internet went out briefly today (doubly whiney & annoying)

    And then I think of you! Taking the time to share your day and week’s experiences and most of all to thank the people who have helped you along the way. I am thankful and oh so blessed that G-d brought you and your sweet family into ours and for that I am forever grateful.

    Know that you are loved, blessed by amazing friends & family and you have earned the right to feel dissapointed and that is understandable & ok! You are a shining example of courage, hope, understanding & strength!

    We Love you!
    Laura Z
    xoxo

  18. I haven’t a clue how anyone handles what you’re dealing with in such good humor and honesty.

  19. I’m beyond disappointed for you and am sorry that you are so! You have every right to be feeling the way you feel. I wish I had a great magical solution to your disappointment…praying my friend…God is with you!


Categories

%d bloggers like this: