By the grace of God, my good days lasted through the Wednesday before Christmas, enabling me to spend time with my dear friend Marty; go to prayer group as just “one of the girls,” standing when they stood, staying to the last; wrapping presents with my husband; leading our family’s Jesse Tree devotions; and going to school Wednesday to watch Little Bear’s nativity pagent.
The little kids were so good! They each had a part to play, and they took it seriously for God. Little Bear was “a little shepherd, with JG!” his best friend, as he never hesitated to remind us. The two of them cracked themselves up a bit, and I have pics of a cunning little smile peeking out of the string-tied headdress, but it was all in good fun. I had fun too, delighting in their success and joyously hugging so many of the mamas I had seen only via email and facebook this year. Members of my prayer group rejoiced with me a second day as our kids ran around afterwards, celebrating the hour or so of freedom – at school with friends, but free to play as they wished, securely in the care of loving teachers and parents.
And then I rested. Thursday, Friday, and Saturday were miserable, catching up from the times I had joyously spent in the company of friends and family (my parents for three weeks, and then my husband’s parents for two weeks and counting). I lay in bed, discouraged, sad, and with pain wrapped around my sides and straight through my bad spot (where the terrible pain indicates cancer) as if pierced by an arrow right where my spine meets my waistband. Nothing worked on my pain, and I cried and cried alone upstairs for much of the days, passing the time reading scripture and novels alike, searching for something to inspire me, to distract me, to pass the hours, and to give me strength. The times I was able to go downstairs with my family were delightful, if too short: making myself comfortable enough with the fancy chair, pillows, and oxygen; playing checkers with 7 year old Widget and teaching him chess (at his request!); and just sitting by the lit-up Christmas tree overflowing with presents despite our rule this year to just choose three….
I just had to tough it out, waiting for methodone to take over and reduce the pain, aided by fentnyl for breakthrough pain (as if it were ever not breaking through) — but the medicines’ effectiveness lessened as my tolerance increased. Truthfully, I ought maybe to have stayed in bed Saturday evening, but I couldn’t. Saturday night – Christmas Eve! – was the culmination of so many things for me. It was a goal, you see. A goal set just about a year ago, when we were told that the cancer had spread to bone, first the ribs and then the spine, neck, and hips, and the pain came back, and we were gobsmacked by the setback that began as a year of treatment and worry, changing attitudes and trying to understand what our “new normal” might be. This year was to be Widget’s year in the Christmas Eve Nativity play, you see, and we had looked forward to it for so long – we already had plans for the grandparents all to visit our house this year at Christmas, for the first time ever – and I remember crying in frustration a year ago that I might not be here to see it.
But I saw it. I picked myself up off the bed and put on my pretty clothes, and went to the church with grandparents from all around. We saw Widget pass by in his costume, and, I have to say, there’s never been a finer Joseph since the very first one. He was so handsome in the dark maroon fabric, serious face giving way to twinkling eyes as I surprised him by stopping by the children’s prep room before the church service began. He ran up to me with a great big hug, and, as I saw him start to get overwhelmed by the excited children, I was able to whisper to another parent that that happens, and if he starts trying to control things, it’s only because the ruckus makes him nervous. The room quieted (coincidentally); I left, and Widget later joined us in the pew. As the priest stood up to read the story of the nativity, the little children took their places around the church. Widget found his place in the back, standing next to the little girl who was to be Mary, and they walked slowly and seriously down the aisle to the altar. Finding a manger there, the little children knelt and listened while the story played out and the others came to worship the Christ child, symbolized of course by a doll. Afterwards, I was so proud of my little boy turned bigger boy, and when he sang the carols from the hymnal with me, I might have shed a tear.
I led a prayer myself later in the service, the same one used to pray for the sick and dying each week, and it was right and good. And then, just before we walked out, singing Joy to the World, a visitor to our church came and knelt at the manger, bringing his gifts first to the symbol of the Christ child, and then, we hoped, to children everywhere.
The next week I would pay for being out that night, exerting myself beyond where I thought I could, but it was worth it to see my beautiful Widget be so reverent and grown-up, to sit with Little Bear on my lap and worship God, and to look fondly down the pew and see all of our grandparents together for a day (not to mention visiting friends!), and for the next day’s family celebration besides.
The week has been at times horrible and at times terrifying, but my medicines are again starting to catch up to the pain and I have a new commitment from my doctors. We will control the pain. They will control the pain, using new approaches and stronger medicines, and they understand now how very terrifying it is for me to work so very hard and to endure so much for so long in hopes of reaching a goal (sitting in a chair with minimal pain; reading, writing, and playing happily with my children; and eating dinner each night with my family) that is far below the quality of life enjoyed by most, and far below what I consider an acceptable exchange for giving up days each week for chemotherapy and other infusions, losing my hair, my independence, and my ability to leave the house without someone driving me (I’ve only driven once since July), and suffering the pain of metastasis in my bones that sends me to bed in tears one or many more times a day.
To survive now, I need to come to terms with this exchange, and to find out what I can do to make the days worthwhile, so I can sleep peacefully at night while we wait for the medicines to heal – or at least to relieve pain that the cancer has caused. I am trying to shift my perspective from anger that my future that has been taken from me into gratitude, again, for all the days that I have been given since my cancer metastasized and indeed, since my initial diagnosis with breast cancer in June of 2007.
Our Christmas card this year was stuffed full of pictures of the good times – so very many good times that would never have happened for me without the medical advances enabled by cancer research, the confidence that comes from belief in a loving God and the existence of tomorrow, and a supportive and loving family that loves me for what I can do, not judging when I can’t.
You are breaking my heart. I am awed by your clarity and your courage. I wish a better 2012 for you. ❤
Trust me, the post didn’t start out this way. I needed some time to collect my thoughts and make some decisions.
So very very thankful for the gift of these days for you and your family. Praying for pain management for you. xo
Thank you. That is, indeed, what I need.
What Paula and Loran said. These extra days of yours are a miraculous gift, not just for you but for us all. Peace be with you, Susan.
Stella. I hate that this is the place we find ourselves, four years after we met. I feel like I’m letting you down somehow, even as I rejoice that you are in a good place today.
But then, I bet a lot of us have trouble with feelings at this time. After all, what do we say when a sister passes due to breast cancer? We “lost” dear So-and-so. Or “So-and-so lost her battle with cancer.” Not fair. Not fair at all.
I do not like to lose.
I probably haven’t the right to say this, but I just can’t imagine seeing your legacy as ever being associated with losing. You have created, and continue to with each word, post and pin, a vast place of knowledge and compassion.
I am hopeful the doctors can keep their promise and push through this to help you squeeze the most out of each day.
Thank you, as always, for sharing with us. I especially loved the intimate glimpses of your widget’s growth.
Happy new year, Susan.
I add my thoughts and prayers for you.
Dans la paix de Christ.
There IS tomorrow. And the next day and the day after that. Keep fighting!!
I’m so thankful you’ve had some good days, and you were able to spend Christmas Eve with your boys.
Sending you all love and hugs. Happy New Year to the “Why family”.
I am so glad you had good days with your family and your friends this holiday season. I will be thinking of you as we cross into 2012 and wishing you many more of those good days than bad and hope that the moments of joy outweigh the moments of pain. You, as always, have all my love.
May the New Year bring miracles of healing, peace that passes all understanding and relief from all pain. You are a hero.
Susan Dear…. My heart aches for you and my eyes weep for you. Continue to embrace your incredible strength and courage. God embraces you with strong and loving arms every moment. May the severe pain become more manageable and tolerable so that you may continue to have meaningful exchanges with dear family and friends. Much love and many hugs…..
A happy New Year to you and your family. So glad you were able to enjoy the holidays. Wishing you strength and love for 2012.
Still praying for your tomorrows.
May 2012 be the year of the cure. Sending you love.
I want to thank you. Thank you for reminding all of us to be grateful for every good moment we have instead of angry for every not-good moment. So often, we miss that perspective and lose out on the blessings every day.
I thought about you on Christmas as I will tonight on New Year’s Eve. And with my thoughts go all sorts of prayers and wishes and hopes for your 2012…
Thank you, Jane. I will be spending it quietly with a good friend and her family. Very quietly, but I rejoice that I’m here to see it.
Happy Christmas Susan, to you and your family. I hope the new pain meds work for you and the drs can give you a better quality of life than you currently have. You are always in my thoughts – sending love and hugs from New Zealand
Thanks, Jenny. It’s always great to see you, and to hear of your amazing work for breast cancer patients in New Zealand. Keep speaking up and out, my friend.
Speak up and speak out, until everyone knows that not every cancer can be cured if it is caught early. Until there is a cure, for you, for me, and for all our sisters and friends in the fight.
Susan, you have given everyone so much to be grateful for, especially grateful for you. You are surrounded by love.
God bless you Susan, for writing, always writing; the rich, the tough, the heartbreaking. I am glad beyond words for the rewards you have reaped for your faith and determination. As 2012 dawns and I renew my own commitments it is you I think of. Sending oodles of love and prayers, for comfort and more sweet times with your beautiful family.
Thanks, Elizabeth. I love to see you here too, my fellow cancer rebel and colleague in stirring things up! Keep at it, friend – the world needs to hear what you are saying! I will speak out until the last, but when I can’t, I’ll need your help.
So glad to see you have good days.
You are in our prayers always. Wishing you
a love filled new year.
Thanks, guys, for keeping me in your prayers and not backing away when things got hard. For surely, now is one of the hard times.
Happy new year and thanks for sharing. My prayers this season are for and with you and may your good days and moments outnumber the bad.
I’m humbled by your post. I’m humbled by your attitude and spirit. I’m humbled by your resolve. I’m humbled by you. Thanks for writing this post. Hoping and praying for more good days…and less pain.
Susan, I wish you all the blessings and miracles of the season. And I am praying for your comfort and joy in these difficult days. May 2012 be a year of peace and healing for you and your family.
Susan, the story of Widget in the nativity play – “never a finer Joseph since the very first one” – brought joy and tears, both, to my eyes.
your love and strength and courage in these dark and unfair days is a beautiful thing. i suspect each word is a hard-won battle on your part. but you win: you make us see the beauty and the pain, both. i – yeh, even me – find great holiness here, in your writing, in the shot of Santa at the altar, in places and perspectives that open my eyes. i am grateful to you, for all you have shown me.
i am particularly grateful to 2011 for giving me the opportunity to spend that lovely afternoon with you. thank you, again, for that.
as we welcome the new year, i wish you respite from and management of this pain. so much, my friend. xo.
Much love to you Susan. I’m so glad you went to Mass and were able to participate in the memory-building Christmas celebrations. You’re never far from my thoughts and I am so grateful for your honesty, bravery and generosity.
Now get some rest!!
You are so inspiring. I have a friend who has stage 4 breast cancer that has metastasized and her doctor has basically told her there is nothing she can do. I sent her you blog link as an inspiration. She is in a dark place right now and I don’t know how to help.
I can’t imagine what the pain is like, even though I have fibromyalgia and chronic pain. Your grace in the face of excruciating pain is amazing.
Every time I come here to read what you have written, I find myself crying at your strength and beauty. You inspire so many people with your blog and we are blessed to have you with us going into 2012. Hopefully, this next year will find the cure for metastatic breast cancer and both you and my friend will be healed.
I am praying hard for both of you.
You are being prayed for in a lil house in a lil town in Tennessee….tucked up in the corner next to NC and Va, Praying that the pain meds will improve and praying for a cure, praying for Divine Intervention on your behalf. Thankful/ SO thankful that you got to enjoy the “finest Joseph.” And in agreement in prayer that more money should go into research. Praying, praying that you will “feel” the prayers of so so many . I rarely comment for I know my words are inadequate – but please know you are being lifted to the King of Kings in prayer, many prayers.
It sounds like a beautiful Christmas, and somehow the “snow” falling on you blog made me feel just a little more like I was there with you. (Yes, I know, the snow was not falling in your church, but what can I say? Your words transported me and WordPress’ simple animation added that little extra kick.)
Like many others, I have been thinking about you often. I hope you soon find that balance between what you must endure and the beautiful experiences that you endure it all for.
Thank you for sharing your life. I pray that your pain is lessened.
You are an amazing lady. God bless you and your family.
You and your family are never far from my prayers. I hope you have many, many more Christmases to come…
Every post makes me think in a way no one else does — I thank you.
Happy New Year, Susan! I’m pulling for some pain-free days for you and I’m so glad to see you made it into 2012 and that you got to see your son’s participation in the Nativity. What a beautiful sight that must have been. Peace to you!
Susan, I’m so happy you got to see the nativity play, for both you and the boys. I so hope most sincerely that your doctors can keep the pain under control for you so you can do the things you want to do.
Susan, I really hope that the doctors can sort out your pain management, and *fast*. For 2012 I wish you more good days, more pain-free days, days you can play and read and cuddle with your boys and husband, days you can immerse yourself in your writing, and days you can spend happily with your friends.
2011 will be cherished in my heart for being the year I got to meet you and spend time with you and friends in real life. Thank you so much for that great gift of friendship!
Much love, as ever.
Amen to what Kate said. Susan, you are a light.
Hi Susan, I am a reader but haven’t ever commented before. Best of everything and hopes for strength and health. I came here first from judy’s blog which I had come to as a parenting blog, but in the years since I’ve had my own double mastectomy.
I have a question in case you feel like answering one. How did you get to a place where you found …something good for you… In faith? I never have, I wonder from outside what that would feel like, how one finds that place.
By the way, I guess there is a reason they aren’t doing radiation therapy for pain control …, hoping they find the right treatment for you.
Susan, I am so glad you got to go to the Christmas eve pageant. You have been in my prayers. I hope you have many more days of painless fun with the boys. Anything you need, I’m available. Lara
Happy new year to you and yours, Susan…..and many wishes for better pain control. You are in my intentions daily, and the bravery and strength you show in these hard–and so unfair– times, always pursuing the love of your family, is a gift to anyone who knows you. I wish you more of the good days and ever so much love and kindness from those around you.
I’m thinking of you often, Susan, hoping the docs find you the best meds for both pain control and healing.
Susan, I pray for you every time I pray. Praying that 2012 brings you much better pain control and many more good days than bad. You are exactly who my daughter wishes to be – and quite frankly, I couldn’t think of a better role model for her. She loves space and everything about it and dreams of working for NASA, preferably as an astronaut. 🙂 Love and many prayers to you and your family from ours.
I wish you a successful 2012, whatever that success might be. I’m glad God has given you strength.
Dear God- Please hold Susan and her family close during this time of her LIFE, and give them comfort.
Love to you Susan.
(And I loved your Christmas card stuffed full of happy!)
Thinking of you still and wishing wide swaths of sunlight for each window in your house.
Stopped by because I am thinking of you. *hugs*
I pray for a cure all the time. I have lost a maternal aunt and a paternal aunt to breast cancer. Your story is such an inspiration that I share it constantly with friends and family (especially the children of my aunts). I pray for good pain management for you, I pray you get stronger, and I am so happy to have gotten to know you and your family through your blog. Many blessings to you.
I am a new reader of your blog and have been so inspired by your story and your writing. As I read about the problems you are having with pain control – I was so sad. No one should ever suffer with pain like you have had the past few weeks.
If you don’t get relief quickly, I would have someone help you find a doctor that specializes in pallative care ( you don’t have to be dying to have this kind of a specialist) the good thing about this type of doctor is they are focused on giving you the best quality of life for as long as you live- and that means keeping pain completely controlled.
My dad was under the care of a pallative care doc when he was having tremendous pain during cancer treatment and it made a huge difference. He had a much better outcome after getting a palliative care doc on board to manage pain meds.
It is hard for the body to heal when it is suffering from pain. Getting pain under control will help your body heal and give you the quality of life you deserve. There are also doctors who specialize in pain management and they can also have your pain controlled in a few hours – there is no reason to suffer for days with pain.
Take care and thank you so much for writing your blog. It has been a gift to me.
Praying Susan … for brighter days, that God touches you and takes the pain so that your days can be filled with more good, with more love, more time and all that you have yet to do here. You’re such an inspiration for so many. Your light will always shine! ((Hugs)) Tanya