Moments

Since my last post about entering hospice, there have been some powerful, meaningful moments.  I’ll share those below, but first wanted to comment on hospice.  I have watched a lot of friends die.  And in seeing this happen, I’ve seen so many that wait until they are suffering before being referred to hospice.  I watched many in and out of week-long hospitalizations.  So, entering hospice, I was leery.  From watching so many friends who entered hospice suffering, then died, often within a week.  I can tell you my experience with hospice has been wonderful.  They are the “go-between” and make sure all my prescriptions are filled.  If a new ailment becomes an issue, they are the problem solvers who figure out the solution.  My view of hospice has changed…they are in place to make sure I don’t suffer.  They help with anticipating what I might need down the road (like oxygen).  They make sure I always have enough supplies to drain my lungs.  They are wonderfully compassionate and I’m so thankful for their service.

Back to moments…last night I was texting back and forth with another Stage IV friend and I was reflecting on all the moments I’ve had in the past two weeks.  Moments of:

EXCITEMENT: Finding out my Fab-U-Wish was granted, to have my book promoted!  For two minutes on E! News, the story wasn’t about what the latest celebrity was wearing, it was about my book, What You Might Not Know.

Enews

 

QUIET: I’ve realized the need for ample amounts of sleep.  Something as seemingly meaningless like a trip to the store requires a 2-3 hour nap afterwards.  Side note: if you haven’t read The Spoon Theory, I highly recommend it.  It’s only a couple of pages, but brilliantly describes what it’s like for someone living with a chronic illness.

FRUSTRATION: I feel my independence slipping away as I require more and more sleep.  I’m usually an on-the-go person and living in denial has only made me more tired.  So I’ve cleared any visits so I can truly let my body get the rest it deserves.

CURIOUSITY: As I mentioned, hospice anticipated my need for oxygen and had several tanks and in-home units delivered last week.  They’ve been stored in my walk-in closet.  Earlier this week, Corbin was looking for me and walked in there.  “Whoa!  What’s this?!”  I heard.  I went into the closet with Corbin and asked, “What do you think it is?”

Corbin: Air

Me: What kind of air?

Corbin: Air, like in the sky

Me: Kinda, it’s oxygen

Corbin: How’s it work?!  I bet you just unscrew this cap and it lets it all out.

Me: Actually see this rubber tubing?  See these two small nubs?  Where do you think those go?

He thought for a few seconds, then pointed to my stomach, where he knows my drains are.

Me: excellent idea, but they actually go in your nose!

Corbin: Nuh uh, Mom!  You’re trying to trick me!

Me: Nope, I promise I’m not.  One day we’ll get it out and I’ll even let you try it first.

And today, we did just that.  Even after draining over a liter of fluid from my lungs, I was still short of breath and the oxygen in my blood was a bit low.  So we got it out, Corbin got to press the button to turn it on, and then felt the cool air flow out the nasal cannula.  He was satisfied and went on his way while I stayed in bed reading while having oxygen.  One of the other reasons I’m so tired is that my lungs aren’t able to breathe in as much oxygen, because of the fluid.  So then, my heart has to work harder to get the smaller amount of oxygen circulated throughout my body.  My resting heart rate used to be in the 70’s.  Now it’s often in the 120’s.  So, I’m worn out.

 

HEARTACHE: Of course there are the obvious ones: not seeing him grow up, missing holidays with him, not being at the last day of school, his graduation, or marriage.  But, last night the heartache was seeing a hand-me-down winter jacket from a friend.  It still has the tags on it and I realized with it hanging in his closet, that I won’t be here to see him wear that winter jacket.

And it isn’t all just about Corbin, although so much of it is.  But, I’ll miss seeing my nephew’s first haircut.  I’ll miss seeing my sister and brother-in-law becoming parents.  I’ll miss seeing Corbin become a father and meeting my grandchildren.  I’ll miss getting to see my parents’ retire.  I’ll miss seeing my best friend’s wedding.

And there is the bittersweet heartache of Corbin starting a new school.  While I’m thrilled to get to see him start 1st grade, my heartache is because he is at a new school, in his father’s district.  This will be one less transition for Corbin when I pass.  And, after such a stellar kindergarten year (teacher and school!), my heartache is for him starting a new school because it is a stark reminder of the severity of my situation.

GRATITUDE: for my family (especially my mom who is staying with us) who seamlessly weave in and out of my house helping take care of Corbin and me.  And gratitude to all of you who have respected my wishes for privacy.

Thank you.

Jen
Living legendary as a mom with Stage IV breast cancer. Author of Learning to Live Legendary and What You Might Not Know: My Life as a Stage IV Cancer Patient.
  1. Lisa Adams Reply

    Love you, Jen. Thank you for your words. I am wishing you the opportunity to have more good moments this week. Xoxo

  2. Molly Reply

    Again your honesty leaves me to tears. You are so real. Thanks for being YOU! I wrap my arms around you, sister to give you peace and more time with your precious son.
    I want you to know that Sarah and I have spoken a lot of you these past weeks. You have been our fearless leader. We can’t think of a better tribute than letting you know we will attend the next mets retreat at Sundara in your honor.
    Hugs to you, my warrior!
    Molly Fuglestad

  3. karen gustafson bryant Reply

    Thank you for sharing your story. As a Social Worker for hospice patients, your story and insight has helped to shape my interactions with patients. As a mother of little ones, it helps me to stay focused on the important things, the things I should be grateful for.

    Loyally, Karen

  4. Kelly Norris-Franks Reply

    Thank you for sharing The Spoon Theory! I just read it. Amazing! Also, thank you for teaching me to enjoy life with my children. I thought I knew what I was doing, but you made me think otherwise. I love you, Jen. Thank you for being you. Xo

  5. Nikki Snyder Reply

    Thank you my lovely friend. Thank you for sharing your life with us, for teaching us so many valuable lessons, for making us laugh, making us cry, and for being so raw and real. Thank you for showing us what it means to fight like a warrior!
    With so much love, respect, and honor,
    Nikki

  6. Carolyn Reply

    Oh Jen,

    I’m in awe of your ability to seem to take a step back and look at the impact of the loss that will be felt by those around you. While at the same time, experiencing such a decline in your quality of life. The magnitude of the Love and sorrow you feel not just for yourself, but for others as well, is palpable. I have gained so much from you in our PMs. Single Mamas taking life one bench mark at a time, and celebrating with each one met. I told you I didn’t believe this was your time. And selfishly I still don’t. It’s so hard for me to believe. Your raw honesty is a gift to those who love you. I think it gives us an opportunity to “know where you are”, and be able to digest it with whatever emotions those around you are experiencing. YOU are a gift. I am relieved you are getting so much support from hospice. I hope for as many pain free beautiful moments as possible. With Love always, Carolyn

  7. Jen Campisano Reply

    Sweet lady, thank you. Thank you for reminding us that there’s room for more than just heartache in the face of this disease. My son is just two, and I hope to have a fraction of the grace with him in the coming years that you’ve shown with your son through this. All the love in the world to you and your family.

  8. Amy Revilla Reply

    Jen, Know that your words will wrap around Corbin and hold him close forever! You are incredible, not just because of your strength but, because you are real and your words are awe inspiring!
    What a legacy you have made for that sweet boy!
    Sweet dreams <3
    Amy Revilla (Chad Smith's mother)

  9. Shelly Reply

    Thank you for sharing so much. I’m a YSCer and have watched from afar much of your legendary life since Atlanta. Having a young son myself I know the heartache you feel. I keep you, your son and family in my thoughts. Your truly inspirational and I send all my extra spoons to you!

  10. Sheila Reply

    I’ve been busy in my own life and just sat down to catch up on your blog. Wow! Through the tears, I am feeling sad but so happy for you. Dying the way you lived, on your terms is so empowering. Using hospice the way it was designed, as a helpful transition, not just a quick gap-stop at the end, makes this time so much better for you and your family. I am proud to know you and blessed by your grace. You are an amazing woman and the world is a better place because of you. Love and joy (with tears) to you and your whole family.

  11. Zoe Kharpertian Reply

    Jen, I don’t know how appropriate this is, but having read your book, I know that your faith helps sustain you, so let me suggest this: you may not be able to share as you are accustomed to doing so in all the moments you list in your heartache section above. But don’t assume you will miss those occasions. I believe you WILL be there, in some form that eludes our earthly comprehension. I believe you will have and be able to give peace and comfort at those times, just as I have on occasion felt the peace and comfort of my own parents’ presence in the years since their passing.

    I hope this helps, as you have helped so many. There is so much that we don’t know. Yet.

  12. Karen Andrews Reply

    Dear Jen, All I can think is there must be a shortage of ANGELS in Heaven! You have done so much and inspired so many during these past five years than most people will do in a lifetime. You, Corbin and your family will be in my prayers as you make the transition from here to eternity. Love always, Karen

  13. Kay Reply

    Jen,

    I am a metastatic cancer patient diagnosed with bone mets in March of 2012. I just finished reading your book, “What You Might Not Know:My Life as a Stage IV Cancer Patient.” It is so true and real and I finally feel like someone has managed to put the stage IV diagnosis into words. I especially appreciated the entries from your friends and family as I feel like I can better understand my own friends and family and their feelings. Thank you for your work! I hope you experience nothing but comfort and love with the time you have left. I am going to get going on my own plan to “live legendary.”

  14. Jamie Zimmerman Reply

    I admire you so much and am so thankful we are where we are now!!! Can’t wait to see Thursday as we walk Corbin and Ashley to their first day of school!!

  15. Bridgett Reply

    Praying for you, Corbin, and all if your family, Jen! We certainly missed Corbin at BTW today, but I’m glad to hear he is still thinking like a scientist! ;)

  16. LKay Paden Reply

    Covering you and your precious family in prayers. You are a blessing to so many.

  17. Stacey Reply

    Jen,
    im writing this on my return trip from Boston and new york. i think about you every day. I want to thank you for teaching me to “live legendary” even when I know I’m dying. You have inspired me to live a better life and I’m a better person for knowing you. Xoxoxo my mets sister.

  18. Sarah Reply

    While we were cheated from you as a small group lead in Junior League in 2007, we were blessed to be offered your contact information and blog to follow your journey. It’s because of you and your outlook on life, your family and Corbin that today I have 4 children and why every morning I wake I know it’s a good day. I might grumble going to the bus stop at 6:58am (what an ungodly hour for sure), be exhausted because someone woke me for ‘another drink of water’ but then I look back on that brief 5min walk to the bus stop, that 5 min wakeup at 3am and know I am blessed and I am blessed to have been a member of Junior League in 2007 to have you, your journey, but put in front of me to help guide me and through life (and what only feels like it’s hardships at the moment) hardships–that are shortlived—and be thankful and appreciative I CAN get up for my kids, I CAN see them on the bus each morning and that I CAN live my life, for whatever time has been put in front of me and my family. Godspeed. I am a social worker as well, with experience in hospice, and I will take your perspective with me to any patient’s home I visit, you embrace yet another part of the life I lead, thank you.

  19. Jem Reply

    Thank you so much for sharing so much of your life with us. Sending you and your loved ones lots of love from the UK. Jem xx

  20. Dana Abraham Reply

    I have told my son about the Lion King theory of the hereafter. We have picked out the star at the tip of the Big Dipper’s ladle as our family star. He knows my spirit will be there when I’m gone. We find comfort in knowing a ‘destination’ and ‘meeting place’ for the future. Love your writing. Muah.

  21. Jessica large Reply

    Your story is absolutely moving and very sad. I have 3 children of my own and could never imagine them ever living a day without me. Reading this really makes you put life into perspective and forces you not to think about the everyday little gripes that we so often complain about and think more about the things we so often take for granted.. I commend you on “living legendary”. God be with you and your family at this most difficult time

  22. Jill Hajrula Reply

    Finally received both your books in the mail. Just finished reading Learning to Live Legendary. Thank you for writing it. I’m anxious to start the next one. Wishing you many more ‘legendary’ days of feeling healthy. Jill

  23. Jill Hajrula Reply

    Just finished your second book. BRAVO! And thank you for writing it! Very moving and I enjoyed getting to know you and your wonderful family. I was also at the Chicago conference last October and am sorry we didn’t get the chance to meet in person. I especially appreciate your inclusion in the book of the way your family and friends are coping. I think I neglect to think of their perspective sometimes so it was a bit of an eye opener. We have other things in common as well…I was born in Aurora Illinois. Also had polycyctic ovaries and fertility issues. Wishing you and yours the best days ahead. Perhaps we’ll meet on the other side. I’d be honored. Jill

  24. Ann Gudenrath Reply

    Jen, I met you years ago when you worked with my son, Scot, at Custard Cup.
    I also know your Mom and respect her so much. I inadvertently mentioned your books a few weeks back and she clearly did not want to talk, which led me to look online to see if I could find out what was going on. I had NO idea your condition had progressed to this point.
    I have since read both of your books and join the multitudes who are in awe of your strength and grace.
    Love and prayers to you and your family,
    Ann Gudenrath

  25. Stacy (Fritz) Barr Reply

    Hi Jen,

    You probably wouldn’t remember me, but we went through sorority Rush together at SIU – way back when. I transferred to U of I after my sophomore year, but it was such a pleasure to meet you while I was at Southern. I learned of your situation by chance and just noticed this blog this past week. You are extremely courageous and I’m proud to say that I knew you briefly! Know that I will be an avid reader of your books and also that I will share your story with others. Sending thoughts, love, and prayers your way. Stacy (Fritz) Barr

  26. Adriene Rose Bowen Reply

    Hi Jen –

    I am so sorry you are having to live with this murderer, cancer. I ordered both your books last week & read them in two seperate settings while sitting on the stairs waiting for my boys to fall asleep. Your words have made me feel so blessed with my little world. Thank you for sharing your heartache & joy. My promise to you is to live in the moment & enjoy my blessings. Bless you, your family & friends as you all navigate through this awful reality. I will be praying for peace & moments of bliss.

  27. Laura Reply

    Loving you with all my heart Jen! I pray for you and Corbin all throughout each day. You are a miracle and I feel so blessed and priviledged to have been a small part of your life. You and Corbin both will forever be in my heart!

  28. Tina Bezdek Hanson Reply

    I’m Thinking of you often Jen. I love your book “What You Might Not Know….” I can’t wait to read Living Legendary too!

  29. Aleene Lenz Reply

    God bless you, Corbin, and your family. You are an amazing and strong woman Jen! I pray for you all every day. <3

  30. jon s Reply

    Godspeed and thank you for sharing your thoughts and feelings. Im blown away by your strength. You deserve peace.

  31. Jill meuse Reply

    Oh Jen…please know that I am thinking of you and have truly enjoyed being your virtual friend since planning our weddings. I wish you peace and strength for your family. You are truly an inspiration and I’m thankful to have known you.

  32. David Gorrell Reply

    Jen you are such a wonderful person. Since meeting you at Chesterbrook you and Corbin have made us smile. You are one of my heroes and I am so blessed to know you. Godspeed.

  33. Linda Reply

    I love the way you are able to give such a clear picture with your words. My hearts and prayers are with you and my wish is for you to be flooded with more wonderful moments this weekend! xoxo

  34. Asia Reply

    It’s 3:55am and you were on my heart. As I have been taught, I prayed for you. I miss seeing you and Corbin, and I hope that he is doing well in his new school. I know you resting but hope you get to read this post. I have never met someone as brave and courageous and honest as you. You have taught me so much about living in the now. I am grateful for your life, Jen. Get some rest and know that my staff and I are thinking of you and Corbin and you are in our thoughts and prayers.
    Love you,

    Asia

  35. Kelly Reply

    Jen,
    I wanted you to know I am thinking of you and praying for you and your family. You are my hero and I am so thankful that we were able to share some really special moments together during our pregnancies and early mommyhood. You are an absolutely amazing person and a mom that I will always look up to. God and peace be with you during this time. Sending you loads of love.
    Love,
    Kelly Fein

  36. Pingback: Young Mothers Who are Dying « It is what it is (or is it?)

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