A hard Thanksgiving

I’m sorry, but it was very, very hard to be Thankful this Thanksgiving.  I am, of course, enormously grateful and thankful and blissed-out over the success that medicine has had in extending my life four and a half years after my cancer was discovered in June of 2007.  As I look back over the year, I know just how lucky I am, luckier than friends lost along the way, and as my children are now in school and settled in small desks next to their own friends, present and future, I am lucky, we are lucky, and grateful.

but the grateful this week is overwhelmed by the unceasing pain.  I have not left my bed or downstairs chair since the chemo last Thursday, and at least four days (Sat, Sun, Wed, Thurs) have been lost entirely to the constant burning pain of the knot in my spine, just at my waistband.  All week, I sit in my chair downstairs with family, desperate not to lose another day to bed.  We talk, we read together, my fingers play with my Kindle Fire as family members come in and out of the room, company changing as the lighting does, throughout the hours of the day.  The pain is so intense I can barely see my loving family through it.  As my children climb onto my lap for snuggles, they push the shoulder this way or slide on my leg that way, and the knot on my spine cries out in pain. I do not push them off.  I mask my gasps and shift the children just a little to one side or the other, burying my head in their hair and hoping that they don’t hear, and that their brother doesn’t see my pain as he looks up from his talk with Grandma across the room.

They do hear, of course, and they do know, and they do listen, and they are on guard this week, running to my side when they hear a gasp and burying their heads in my chest as I grunt to get up from the chair.  They need reassurance, and I give it to them wordlessly, the only thing I can give today, this week.  A hug.  A pat.  A snuggle, a smile.  With or without words, telling them always Mama loves you.

The guilt of not working on the big projects and finishing the things that need to be finished is everpresent. I can’t decide, my body can’t decide, whether to rest for now so that I can recover and be healthy to finish each project when I feel better or to push forward and finish it right now so that it gets done in my lifetime, and so I have kind of a mid-illness crisis when I do get control of the pain, however briefly, and I don’t know whether to spend my time working or resting

but I always know to spend my time with my children, reading, or talking, or playing Yahtzee, Connect 4, and matchbox cars.  This is right, no matter how good or bad I feel, and I push myself to have these good times this week for them, for me, for family.  I push myself past the pain and into the love, as long as I can, and when I can push no longer I rest, asking my pallative care physician to increase the medication.  He does, questioning no longer, adding more medicine Thanksgiving night, as if this were the normal thing to do on the evening of a happy, family-centered holiday.  More pain control.  More meds.  Will it work?  For how long?  I don’t know, but I hope that it will work, and as I sleep I relax a little, the knot loosening, and I smile.  It worked.  It worked on Friday, and for part of the day today, and each day was a quiet day well spent.

At the end of the holiday, I am still grateful for the years given to me after the diagnosis, and the opportunity to be my children’s mother, even on the hard days.  To do research and to enjoy my work.  To push for good and to support those doing good.  To come back to the church and to seek for ways to use my talents on the days that I can stand to stand.  To be there for friends and family and children, and to make each day count.

I am so tired now, though, and now, I must rest again.

A favor to a friend, Susan McCorkindale, and in gratitude for the clinical trials, care, and pallative care given to me – if you live in the D.C. area and are interested in national health care issues, from health care reform to navigating cancer care: what every patient needs to know, please consider attending the FREE symposium next week at Georgetown Lombardi Comprehensive Cancer Center: “Fighting a Smarter War Against Cancer: Linking Policy to the Patient.”  It’s a great lineup, and the speakers are top-notch, from Senators, to Law professors to pharmaceutical companies, researchers, doctors, nurses, and pallative care.  Check the schedule, and see if you can attend all or part of this amazing opportunity at Georgetown.

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112 Responses to A hard Thanksgiving

  1. Susan, your family must be thankful beyond measure to have you in their lives. I’m at a loss for words, because I know nothing I say can ease any of your pain. I’m always touched by your words, though, and I feel it imperative to share that with you.

  2. lscheuer says:

    Susan, you enrich my life.

  3. Elena says:

    I do not have the right words for the moment—other than to say that you do not need to do anything other than take care of you.We can doing all the being thankful in your place–for the friendship you have shown, the love you have shared, and the you that is you. xo

  4. I’m thankful for you, your honesty and your strength. Sending you so much love and prayers.

  5. Susan…no words. Just reading what you write and keeping you and your family in my thoughts.

  6. You are amazing and wonderful and whatever you do will be “right”, whether it is rest, work, or – of course! – spend family time. I am thankful for you, for having your words to enrich my life, for your family and friends who support you so well, and for your medical team who work so hard to support you too. Much love, and very very gentle hugs.

  7. Thank you. I should have said what I say every year, that I am grateful for friends, for family, for blogfriends, for work, and this space where we all can share all of this with one another.

    It’s true – it’s just hard to see this sometimes, through the pain.

  8. Melissa says:

    Sending you love and light ….

  9. Linda Lawrence says:

    Thinking of you!

  10. Marita says:

    No words but a hug and wish for you to have more precious time with your wonderful children.

  11. Lindsay says:

    I am so thankful for you Susan. We’ve only met in person a few times, but your words have helped me immeasurably over the years. The last four years have been rough for me in very different ways than for you. Many times, when I have been feeling pitiful or weak or bitter, you have posted about seizing the moment and loving your children and your wonderful husband. Your words are powerful reminders to me of what is important in this life, and how to live well.

    I wish I could do something to help you in some way, or to make your life just a tiny bit better. As it is, I will send all my positive energy your way.

  12. Loran says:

    Gently encircling you and your family with long distance love and prayers. xo

  13. Fran says:

    Susan Dear….. Just rest. No one expects you to do more, for now. My heart goes out to you, sweetie….

  14. Lynn says:

    God bless you and your family forever and always.

  15. Twice Five Miles says:

    <3

  16. Twice Five Miles says:

    No words for this… just sending strength and caring…

  17. Catherine H Myers says:

    Susan, I’m so sorry to read about all your pain. I wish it could be banished entirely.

    In case you’re taking a vote: I vote for rest

    And I hope for lots more play and love and pain-free days for you.

  18. Lakeline says:

    I’m sending you all the prayers and love I can. Thank you for your truths.

  19. Mary Ellen says:

    Praying for you tonight…

  20. Honored to read this Susan. A reminder for all of us to be thankful.

  21. a. says:

    Offering prayers and positive energy to you.

  22. jodifur says:

    please let me know what I can do. Are you up for some company monday morning?

  23. Julie Marsh says:

    Oh, Susan. I love you. My heart breaks for you. I keep wishing you well. I need to wish harder.

  24. Loralee says:

    Thinking about you and your family, darlin’. xoxooxo

  25. Amie aka mammaloves says:

    I would do anything to take away that pain. I love you and am do grateful for these years. You have already done more than most people. Rest. Rest without remorse.

  26. Karianna says:

    I am so thankful for all you have taught me, and wish I could wipe away your pain in exchange.

  27. zapladybug says:

    Brave woman – I’m so grateful I met you through #bcsm. I’m thinking of you – ready to do anything I can to help, even if it’s just sharing your posts so more of us remember our blessings.

  28. pgoodness says:

    This one leaves me teary-eyed. You are such an amazing person; a fighter the likes of which I have never seen before. I only hope the pain stays away longer. The simple fact that you take time to write here is a testament to your strength. I am thankful for you.

  29. Molly says:

    Love you honey! I hate cancer so damn much.

  30. susan your words lift all of us up- we are in your debt for your tireless efforts- your fight is all of our fights and what you have managed to achieve in these last few years most never do in a lifetime–your kids are lucky to have you as are we

  31. Thinking of you, today, this weekend, and always.

  32. Ginny Mason says:

    As others have shared, your post leaves us in tears wishing there was a way we could wipe away your pain to give you pain-free days to enjoy your family.

    Thank you for being transparent and brave enough to show the world what it is like to live in your world. For far too long people have tied all breast cancer in pink ribbons. It’s not cute, sweet, or fun…….it stinks.

    Holding you and your family close at heart and in prayer.

  33. I’ve never met you, but I am thankful for you and your blog. It provides a window into an experience different than mine, and that matters. As does playing Yahtzee and Connect Four with your kids. And all the love I see in these comments.

  34. thinking of you, sending prayers and love.

  35. my beautiful friend… as always I read and wish I could take your pain just for a little while to give you a reprieve.
    <3

  36. Susan,

    I just found your blog through Linda Sellers. Praying for you.

    Sharon

  37. Heather says:

    Your courage is astounding. Thank you for sharing your story with us–I hope you feel the love and prayers from all the places your words reach. xo

  38. Daisy says:

    Our work ethic makes it tough to rest – especially us Moms. Resting is your job now. Remember that. When you’re thinking “I should…” remember, your family loves you, not the housekeeper. Rest.

  39. I am thankful for YOU, and how much you share of your life with us. I am praying for pain-free rest and peace for you. xoxo

  40. *m* says:

    Praying for pain relief and many hurt-free snuggles for you.

  41. Like so many others here, I am thankful for YOU. Also praying for pain-free rest and precious time with your little ones. Those are the important things, never mind the shoulds!
    Sending prayers and hugs.

  42. Leslie says:

    Oh Susan, I am so saddened, and yet grateful, to read this. Pain is so difficult to bear. You are amazing to keep giving of yourself while you are suffering. I’m sure your family appreciates every single second of your love and attention and I appreciate being able to read this. Thank you and I hope and wish that you find some relief, in doing, or in resting.

  43. laurie says:

    I am so sorry you hurt so badly, Susan. I really am. Glad today and yesterday were a bit better.

  44. […] dear friend Susan’s post has brought my priorities back into sharp focus for me. She’s homebound, in pain, fighting […]

  45. Ruthie from California says:

    It sucks that you have to be in so much pain. I pray that it is eased and that you have more sweet memory making time with your family.

  46. Amie Hood says:

    Thank you so much for sharing your truth. I hope the coming days bring more moments away from the pain.

  47. Amy says:

    I am hopeful that you have painless days ahead where you can work and play and live fully. I am hopeful for you.

    And I am so sorry that you hurt.

  48. I am thankful for your friendship and your strength to share your story despite the pain. Sending you love and wishes that the pain subside so you can finish those projects that are so very important while continuing to spend time with family and friends.

  49. This: “I push myself past the pain and into the love,” really touched me.

    We are here. I am praying.

  50. veronicaeye says:

    Susan,

    You are so strong. I love you. You are in my thoughts.

    Roni

  51. Susan, I truly do not know a more brave and generous woman in all the world. That you are still reaching out, still sharing yourself with us is a gift beyond compare. I am but one of the multitude here, sending you love, wishing we had magic wands and could ease your pain, give you more… more peace, more time. We are here with you, we are here

  52. Tina says:

    Susan – I am thankful for people like you, who inspire all of us with their words. I pray that you get some relief from the pain so that enjoying every minute with your family gets a little easier for you.

    XXXOOO
    Tina

  53. Karen says:

    Susan, you’re in my thoughts. I wish for you many, many more chances for the cuddles and the matchbox cars and every other joy your family brings you.

  54. Andrea says:

    May God wrap you in His always loving arms. around you and give you only the loving comfort a Merciful Lord could give. I pray for rest and relief to over come you. Most of all I pray for that dark disease to leave you.

  55. flutter says:

    I am holding you in my thoughts, Susan and praying to whatever being will listen to cease your pain.

  56. Manic Mommy says:

    Susan, you do us honor. God bless you.

  57. {sue} says:

    Thankful for you also and praying intensely for some relief from your pain.

  58. Echoing everyone’s sentiments to say that I’m praying that the love can overwhelm the pain and that you are able to enjoy those playful moments you have with your beautiful boys.

  59. Saskia says:

    Of course it’s hard.

    I am so sorry you have to go through this and I am in awe of your spirit and courage. Know that I am sending you my personal kind of prayers from across the ocean..

  60. elesha says:

    Oh my how you have a way with words. I can not help but well up. I hate this and I hate that you are going though this. What can I do but pray and pray and pray some more.

  61. tracey says:

    I can feel the love you have for your children and family. I can’t imagine what it must be like to be them and to be loved so deeply that a stranger can feel it across the internet.

    Praying for many, many days without pain for you…

  62. Bon says:

    your pain and suffering make me angry even in my deep gratitude for your time with your boys, with your work, with all of us. sending you love. wishing it were relief.

  63. Rhonda Garman says:

    Rest, Susan. Thank you for your love and your life, and for your enduring generosity in sharing everything with your readers. Please accept my love and gratitude.

  64. TwoBusy says:

    As is often the case when I come here, I’m at a loss for how to respond in any way that comes close to addressing the great pain. brief joys and limitless capacity for love for your children that comes through – clear, unblinking, glorious – in each word you write.

    You are an amazing woman, Susan.

  65. Stimey says:

    Although I wish you didn’t have to be so strong, you must know that you are. I too am grateful for the extra years your treatment has given you, but I am so angry at what the cancer has taken. I love you so much, friend.

  66. Susan, I just discovered you. I have a sister who has been dealing with a brain tumor for close to 20 years. She was actually put in hospice and then discharged because she just isn’t dying anytime soon. But of course I know that right now it isn’t about dying, it’s about pain and other losses. I worked for years with people dealing with pain and loss. I salute your spirit and your love for your family. I am also a musician. Here are a couple of songs you might find uplifting. One of the songs is called “Celebrate Another Day.” I know that with your pain it is hard to “celebrate” another day but I also can see that you truly do celebrate this day and another chance to make a difference . http://www.youtube.com/watch?v=Bn0bJYH3aUM (Answer in Your Soul) http://www.youtube.com/watch?v=HmGnn9TWixg (Celebrate Another Day) I send all my love and support to you.

  67. Thank you for your honesty, and for continuing to write. Those tentacles of connection are so powerful, and your capacity to reach people is a gift. Thinking of you and your family. – Gayle

  68. Susan, thank you for sharing your story with us. Thank you for using precious energy and time to keep us in the loop. Thank you.

  69. Susan – I’ve read you for a long time, but have never commented. Today I feel that I need to comment, to say something – and while I have this need to say something – anything – I have no words. So simply – thank you and I am thankful for your raw emotions and honesty. Sending you good mojo and hugs.

  70. The one thing I know (besides your general lovability and brains and courage) is that you are making a mark — putting a face (and a convulsed spine) on a disease that too often is a bunch of pink ribbons and tee shirts. Behind every one of those is a woman meeting this challenge and you give voice to all of them. Your children are of course blessed for every day they have with you – that they can keep in their hearts – and so are all the voiceless women for whom you speak. Always in Awe – Cindy

  71. Carabee says:

    Your courage and strength are an inspiration. Wishing you comfort and love.

  72. Andrea says:

    Susan,

    We are praying for you and love you so much!

    Love you!

    Andrea and Doug

  73. Niksmom says:

    I continue to pray for your health, your comfort, your peace. You have such grace in the face of something I cannot begin to imagine. I am thankful to know you and to learn from your grace, your intelligence and your wisdom.

  74. magpiemusing says:

    love to you, susan. so much.

  75. NYFriend says:

    Thinking of you and hoping the pain eases for you soon. It just sucks and I’m really mad at cancer for doing this to you.

    Wishing you some rejuvenating rest.

  76. Becky says:

    You are so amazing, I don’t think I could do all you do. Never doubt how wonderful of a mom you are to those boys. They cherish even the smallest of moments. Can they do some type of spinal block on the area causing so much pain? Maybe acupuncture on that hotspot? Will keep you and your family in prayers and hope an answer is close for easing your pain.

  77. Susan, I’m so sorry to hear of how you have suffered over the holiday. I can tell you are a terrific mother, and I know your kids appreciate everything you do for them.

    I’m glad the pain med worked.

  78. Amanda says:

    Oh, Susan, this makes the comments you left me that much more precious. Please be gentle to yourself, you have given so many of us so many reminders to live with gratitude, allow yourself to feel whatever it is that comes.

    Hoping the fire cools.
    xo

  79. NOR says:

    Pain pain go away
    Come again some other day.
    On second thought, no

  80. Susan….I so get it when you say you found Thanksgiving to be difficult. When it came my turn to say what I was thankful for I was at a loss for words. Then I said I was thankful that my husband was always there to cut up my food for me (owing to newly acquired hand disability) and then I realized that was really a metaphor for everything else that he and the family do for me out of pure love. But still, it just shouldn’t be this way…………sending love your way.

  81. Kami says:

    Praying for you Susan. You’re an amazing mama.

  82. YP says:

    So sorry to hear that you are in pain, but glad to hear you found some relief! You are doing a fantastic job of making every moment count. I am as usual, inspired by your outlook and praying that you will be able to enjoy many more precious moments with your family.

  83. Jenn says:

    I wish that I had words to express all that I feel reading this, but I don’t. As a woman, as a mother, as a daughter, I wish that there were something that I could do to ease your pain, as I’m sure all of your readers do. I’m praying for you and for all of those that love you so very much, Susan.

  84. Thinking of you and yours, as always.

  85. nancyspoint says:

    Susan,
    I am deeply moved by this post. Your honesty, grace and determination are astounding. I’m so sorry you are having such tremendous pain. To say your continuing gratitude and will to push through your pain is inspiring seems totally inadequate. I wish I had better words. Sending love and warm wishes.

  86. Oh, dear Susan, it’s so hard to know that you are suffering this way, but I’m grateful to you for your continued honesty in sharing your truth here. It’s important for all of us to know. It could be any one of us. Gentle hugs.

  87. Skye says:

    Thank you for these deep truths for taking the time and effort to share. Your children are so blessed by you, that you make love the priority. I send you love & wishes that the pain medication continues to work. Sweet peace & comfort to you always, dear Susan.

  88. Susan, I hope you have some pain free hours and days ahead and can enjoy those precious times with your beautiful family. Many hugs.

  89. AnneMarie says:

    Susan,

    I think your words have touched the world and caused many tears to flow. Your selfless love jumps right off the screen. I wish there were a way for each of us to take a small piece of the pain so it would lessen yours.

    To say anything other than, “I am here and I am listening” seems so trite and horribly inadequate.

    I send love to you. I’m here. I’m listening.

    xoxox
    AnneMarie

  90. Allison says:

    I admire your gratitude; I am so sorry for your pain. Praying for you.

  91. colleen says:

    Dear Susan, please know that I’m praying for you all the time and that the prayer network is holding you close in heart. I am so sorry that you are in so much pain, and I wish with all my heart that I could alleviate it for you.

    You know the song, “And they’ll know we are Christians by our love, by our love”? Well, I think that the word “Susan” should be substituted for Christian in that line — because that’s what I think of when I think of you — not Susan the scientist, or Susan the blogger, or Susan who has cancer. No — I think of Susan, who is teaching us all how to love better. Thank you for that, for you. I’m praying for a respite from your pain.

  92. Thinking of you and praying very specifically today for an easing of your back pain.

  93. Betty Wilson says:

    Praying for you and hoping you know just how special you are.

  94. Maria Rabb says:

    Hi Susan,

    I read your posts on the ibcsupport website. I was diagnosed with Stage IV ibc in 2009, and I have 3 children. Thinking about you, with you, Maria

  95. Your story really moves me! While I was reading this I was thinking I wish I had some way to help you do all you want to do.

    I will be saying prayers for you and your family.

  96. Jo Major Ciolino says:

    I’ve started to write about 3 times, can’t seem to settle on the right words. I am trying to channel my cancer/pain anger into something constructive with little success. I hope you are having a better day today, making a few more of those priceless moments with your family, but most of all knowing we are out here thinking about you, sending all our best light and prayers for pain relief 24/7 – just KNOW that throughout the day we are reaching for you and thinking of you, okay?

  97. Boston Mamas says:

    Sending big hugs from Boston… xoxoxo

  98. Lynn says:

    As December begins, I pray that this will be a month that you are pain free and strong to enjoy the holidays with your family. Think of and pray for you often. You are probably the strongest woman I have ever known. Not personally, of course, but sort of through your writings. Love to your family and you.

  99. Susan,

    I am so sorry for all your pain. It’s just not fair. Don’t understand this design of disease and pain.

    Isn’t there more that they can do to boost your comfort? It seems there has to be some relief and I hope it becomes yours. I guess you know massage adds a little magic to the pain killers. They work nicely together. My father was in so much pain the past 10 years. He finally passed away on Monday and it was hideous, the pain. But I’d massage him four or five times a day, after many of his morphine hits. I’d do his forehead and temples and face one time. His neck and shoulders and arms next time, etc. It helped him to sleep and he couldn’t talk anymore the last couple of weeks, but I could talk to him and he heard it all. And we bonded while I rubbed and did tiny circles and slid my palm over his skin. I hope December is a better month for you. You are a strong woman.

    Rachel

  100. M says:

    Thinking about you and praying.

  101. edenland says:

    Thinking of you. Sending my love. And will play with my boys today with more of an open heart than I had before reading your post. XX

  102. Susan, still thinking of you as you try hard to appreciate the holidays. I hear ya, about how hard it is for you. I can imagine part of you is saying – so thankful to be here for another Thanksgiving and maybe part worried that it could be the last one … maybe not tho – you have endured so so much and for nearly 5 years.

  103. Amy M says:

    Susan, I constantly think about you and pray for you. Tonight, after reading your post, I am taking a step back from my woes to realize how fortunate I am. Stay strong, lady.

  104. Deb says:

    There is no upper limit or ceiling with narcotics Susan. The right dose is the dose that relieves your pain and allows you to function. I’m so sorry.

  105. Kristen says:

    My dearest “Girl Power”…I am praying so hard for God to take away your pain, the cancer–for you to be healed…for a miracle in this season of miracles.
    Your love and spirit are an inspiration to us all.

  106. (another) karen says:

    Here via Cecily at Uppercase Woman. Thinking of you.

    Karen

  107. Diane Krapf says:

    Dear Susan
    You have been on my mind everyday since this last post from you on Thanksgiving. We were on retreat together at Bon Secours this past October. That weekend changed my life the way I used to know it. I’m so thankful I got to meet you and Curt. Diane

  108. JenC says:

    Susan, thinking of you.

  109. […] to @whymommy. Last thing I read about her con­dition, she was at home having a tough but cozy Thanks­giving at home. Now she’s in the hos­pital and in her words, […]

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