Ten

We walked in late, exhausted from the drive North in the dripping rain, driving towards the unknown with so many other cars hustling and hurrying on their way home from work.  We walked in late, blanket held tightly in my arms, into a room full of nine cancer patients and a spouse for each, nurses and session leaders.  They had saved a chair for each of us, but I hesitated as I looked at the bony metal things, for my hips were screaming in pain from the drive up.

I am bedridden most days now, the pain of the last three weeks crescendoing when I dare to sit at my computer or dawdle after dinner – 30 minutes is my limit in a chair, putting all my weight onto the cancer-enriched hips.  They don’t like it, and neither do I, and I hesitated before sitting in a chair that I knew would hurt.  I did it anyway, because really I’m a conformist. I follow rules and try to understand why and then make up games like “What would I do to make this better?” in my hotel room after meetings.

It lasted only a few minutes.  My hips hurt, and the pain screamed so loud I could not hear the speaker.  So I took my blanket and lay down behind the circle of survivors, shuddering with the pain and the embarrassment at not being even good enough to sit with the warriors in the circle.  My husband joined me, and stroked my forehead, and told me that it would be ok.  That it already was ok, and that he loved me.

And I was reminded in that instant – and in so many instants that weekend – that he did, and he does, no matter my disability now or my emotions toward that evil beast cancer that is trying to steal my life.

The Johns Hopkins nurses and organizers of the weekend retreat (A Journey of Courage and Hope for Couples) brought in a couch for me, and I thought I might die of embarrassment, but they were so kind that I accepted, and I lay my head in Curt’s lap and my feet cuddled up at the other end of the couch, and we spent the weekend together like that, or flipped vice versa, with my head on a pillow and my feet being gently rubbed as we worked through the sessions together.

I met some amazing people that weekend, like Leanna, a woman just younger than us, gifted with compassion and healing ways about her, she of the Labyrinth and the defiantly pink hair covering a scalp that has seen radiation, a shunt, and more than anyone should have to deal with.  She walked with grace and a walker, and her loving husband Herb bustled about her, eager to help in whatever way he could, knowing that he could not take her pain away.  They are a strong couple, and new friends, and I hope to see them again since they do not live too far away.

Rachel gifted us with laughter, irreverance, and a fighting spirit all weekend.  She introduced me to the young mets board for young metavivors, survivors with metastasis, and she bubbled all weekend long about plans for the young survivors group that she was forming in Louisiana, at a hospital where they only knew four that fit the bill.  She and her husband kept us in stitches, and we bonded quickly as we insisted that for pink ribbons to be helpful, they must be wrapped around research into a cure for this cancer.

The group was led by Lillie Shockney, R.N., an amazing force for cancer survival and resources.  She helped us see past our current states and see into a future where things could be different.  She helped us remember the past, and we did an exercise of memories, and I’ll share more about that project and other things that cancer survivors — and, frankly, all of us — can do to increase the odds that our children will remember us when we’re gone.

Heather and Tammy, Pat and Pam, Marie, May … oh, I wish I could sketch them all here, but I’m sticking to the ones who are already out there on the internet, for their own privacy, but I will say that we were blessed to meet people who were newly diagnosed and 14 year survivors, people with rich, tight marriages, people who could laugh with each other, and people with all states of hair regrowth that I swear no one noticed, except to admire a beautiful scarf or a particularly gorgeous shade of red on Saturday’s wig.  It was a time for us to be together, but it was different than all the other retreats and support groups that I had been to before.

This retreat recognized that we are not just individuals plucked from the population and stricken with disease.  We are partners, spouses, mothers, daughters, and our disease exists in a matrix of love and compassion — we hope — and our supporters need support too.  So as I thank the organizers of this retreat, again, Lillie Shockney, the Johns Hopkins Breast Center, and the funders, The Salisbury Foundation, headed by a single individual who wanted to make a difference and called Lillie one day, asking what she could fund that would matter.  This mattered.

I also want to thank all of you who have supported me in our fight against breast cancer.

Those who have made casseroles.  Those who dropped by with brownies.  Those who took my children for an afternoon or dropped by to sit with me in the morning.  Those who call once a month to check in, and those who make crazy fun that I can still join in.  You are all wonderful, and I thank you for being there for me, for not giving up on me, and for including me in life.  I am not giving up.  In fact, I am renewed and energized, and I am talking to my oncologist this morning about ways to reduce my pain and get me back into life and out of the bed.  I want to go see those soccer practices myself.  I want to volunteer for cub scouts.  I want …

I just want to live, and today I thank all of you who have helped encourage me to follow this dream.  There are two more posts about the retreat to come, one chock-full of ways to help you preserve your family memories, and one in which I will share with you the miracle that occurred Sunday morning, when I was at my worst point, and when the pain was almost too much to bear.

51 Responses to Ten

  1. I am so glad that you and Curt had this weekend together, and esp. that it energized your soul. Thanks for sharing your experience.

  2. Barbatthebeach says:

    As always your words inspire me. I am looking forward to reading the ideas you have on how to preserve family memories. You have amazing strength and I think about you often and look forward to your posts.

  3. I am so glad you and your husband were able to go to this conference together. It sounds like it was very therapeutic for both of you.

    You are always in my prayers, Susan. I think of you quite often and every time I do I remember your post from some months ago about the verse “Peace. Be Still” and I say those words both for you and as a reminder to myself.

    Sending you love today and always.

  4. Kelly Kruger says:

    What an incredible way to spend the weekend, Susan. I have heard of Lillie Shockney, and I live in Minnesota. Continue to surround yourself with those who energize you and feed your soul. It is “ok” to check out of life on the days when you need rest, but you can keep your visit there short. I am sorry to hear that your level of pain has kept you from living life each day as you would choose, and I hope that you come home today with a plan that finds you pain free.

  5. Sending soothing thoughts, strength and prayers to you Susan.

  6. Michelle Baker Willis says:

    What a great gift for you and your husband, and what a great gift for everyone who reads the words you have written about your experience. That is the beauty of what you do here with this space. The ripple effect of that woman’s generous donation and the organizers’ hard work, and your sharing of it all is unimaginable. How many people have you touched? I can’t even dare to guess. “Friends” of friends of friends all over the world are reading your words and are being touched by them. You are an amazing inspiration.

  7. lscheuer says:

    Thank you for sharing your thoughts and your energy.🙂

  8. Minky says:

    I love you. You inspire me every day. Ive got some cupcakes with your name on them!

  9. Elaine says:

    You’re good enough, Susan. And you inspire me to live a better life. I hope they get rid of this pain for you soon.

  10. Stimey says:

    Susan, I’m so glad you had such a wonderful experience. What a wonderful gift of new people in your life and new energy. Much love to you.

  11. Amanda says:

    The love and spirit inherent in your life have shown through in every post I’ve ever read from you, but this particular post shimmered with even more.

    Thank you always for sharing with us.

  12. millie says:

    I don’t even know what to say. I want you to live too, and I hope the pain will ease up and can’t wait to read that you are indeed watching those soccer practices and doing all the other things you want and deserve to do. Take good care.

  13. I don’t even know what to say. I want you to live too, and I hope the pain will ease up and can’t wait to read that you are indeed watching those soccer practices and doing all the other things you want and deserve to do. Take good care.

  14. magpiemusing says:

    Love to you, Susan.

    I’d bring you casseroles and brownies if I were nearer – instead I make do with postcards. Know that I’m thinking of you from afar.

  15. Sammie Love says:

    I am so glad that you and Curt had this weekend together. Your spirit and words always touch me Susan! I am praying that you get some relief from your pain soon, that you get outside to enjoy those soccer practices and most especially that you will be here to receive that piece of paper tied with a pink bow proclaiming a cure for cancer.

    I think of you daily while I am running to and fro here in San Francisco. I can’t help much but I do include you in my prayers, your spirit dwells in my heart and mind. Sending you my love and hugs from afar Susan!

  16. Bon says:

    the retreat sounds extraordinary. as is being loved, being in a place where love is focused on and strengthened. heartening to know.

    i’m going to go read more about Lillie Shockney. i wonder if these retreats exist elsewhere? perhaps they should.

  17. Susan says:

    I am so glad you have such a wonderful support network immediately around you. And wishing you ever more love, every day. And wishing for less pain.

  18. Eve W. says:

    Susan, you continue to amaze me with your grace and your beautiful writing. Thinking of you!

  19. Neil says:

    So essential to have that support and glad you found it.

  20. That retreat sounds amazing. I’m so glad you enjoyed it. And I’m so glad they had a couch for you to lay on.

    Wishing you love and support and strength my friend.

  21. Heather says:

    Those of us who don’t know you in person or aren’t there in person are surrounding you with prayers.

  22. Rachel says:

    I was SO glad to meet you this past weekend Susan… You have such a way with words, I could see Leanna in front of me with that bright pink do! Miss you guys already…

  23. You are an amazing inspiration. My prayers are with you.

  24. Vanessa says:

    Every day is a gift. And every day that I see a new post from you, my gift is even better. I don’t comment often, but I do check in daily, and just want to send my virtual (gentle) hugs your way in support. I think of you often and you’re in my daily prayers. So glad to hear about your experience on the weekend.

  25. Linda Lawrence says:

    Will look forward to the next two blogs. Love you!

  26. As with all your posts, I am left brethless and with tears in my eyes. I am so glad you got that weekend away, and I wish nothing but many more weekends (both away and at home) for you.

    Much love as always.

  27. So glad you were able to attend what sounds like an amazing retreat, and meet such wonderful and inspiring people. Sending you love and support everyday.

  28. {sue} says:

    What a blessing! I’m so glad there are people who plan things like this and I am so glad that you were able to go.

  29. I love hearing that you are energized, and I am hopeful that this post means that your pain is more under control.

  30. I think that was an awesome way to spend a weekend.

  31. Elena says:

    I am so happy that you went to lay down, and that you accepted the gift of the couch..and that you two had this weekend together. Love you so!

  32. Though you may have felt embarrassed on the couch, people must have been impressed that you were there at all with so much pain. I’m looking forward to reading your ideas about preserving family memories. Your pain is so vivid and I hope you and your doctor find a way to soothe it.

  33. i am so so sorry you have this pain, it seems so unfair that the very drugs that help relieve the pain make you sleepy. i want you to be able to do regular mom things too. cancer takes over your life, you live eat sleep breath it. i don’t know why it’s you and not me, why i got to be the lucky survivor. i wish i could take some of your pain😦

    the thing that makes me happiest is that you found this group, this retreat and that you have so much love surrounding you, your hubby is amazing. rest well, feel better, hugs.

  34. Deb says:

    Have they done radiation on your hips? Just wondering. Take care woman. Sending hugs.

  35. I am so glad you had this wonderful weekend. Thinking of you, always.

    You have lived more fully and genuinely, connected more deeply with so many people in your life so far than most people ever do, or would, even were they given three lifetimes. You are my hero.

  36. Sue Farrell says:

    Susan, I am so glad that you had a wonderful weekend. You are an inspiration to all of us survivors. Many of us know that in time, that nasty cancer is likely to return. It is important that we make our days full, fun and worthwhile. If we have a passion in life, we need to feed it. For me, it is quilting. Love that family with your whole being.

  37. zahra says:

    It was nice meeting you. You inspire us, especially me who is always in tear. Thinking of you and other.

  38. Amy says:

    You are an inspiration to moms everywhere, sick or not. I wish you many more family memories. God bless.

  39. clifford says:

    can’t wait to hear it, Sus.

  40. Dorothy Doyle says:

    What a wonderful experience to have had – and as always, you express yourself so beautifully. My prayers will be with all the couples who were in attendance at this event. I’ll look forward to reading about Sunday’s miracle too…may it be followed by many more miracles for you and your family.

  41. what everyone else said.
    ❤ my beautiful amazing wonderful friend.

  42. Martha Mullally says:

    Hi Susan,
    I have never left a message here, but I have been reading your blog for the last several months. Thank you for your honesty and courageous spirit, you are truly an inspiration.

    I saw this video this morning and thought you would like it, it’s a music video that cancer researchers at McGill have made to raise money. As a science geek myself (currently completing PhD in biology), I really got a kick out of it.
    http://www.youtube.com/watch?v=Hg1yw8D3glE&feature=player_embedded

    All the best for a peaceful weekend, Martha

  43. Heather Weir says:

    Susan, you truly are an inspiration. You have touched so many lives. The posts you share remind me, and I’m sure others, that no matter what, don’t give up. Thank you.

    I hope your oncologist is able to help you reduce the pain.

  44. Bless you, Susan… bless you. xoxoxo CGF

  45. NYFriend says:

    I’m so glad you got a recharge! I hope your oncologist has some new ideas to get you back out there. 🙂

  46. Becki says:

    Sending love. I wish I could bring casseroles, or watch your kids, or bear your pain for one whole day so you wouldn’t have to.

  47. Planet Mom says:

    Hello Susan:

    Firstly, you are an inspiration. We would do well to try and emulate the grit and genuineness you exude each and every day.

    Secondly, I’m nominating you for the prestigious and highly coveted Versatile Blogger Award on Monday (which you can accept, or not…it’s completely up to you)! Congratulations! 😀 Incidentally, my post (Food for Thought) will be live around 5am EST and I’ve linked to your site.

    And thirdly, I hope all of this was okay and that you’ll be somewhat flattered. 😉

    Thanks so much for writing so well (hence, the award)!

    Best,

    Melinda aka Planet Mom

    P.S. Be well…you’re in my thoughts and prayers always.

  48. Elesha says:

    Gentle hugs x

  49. Melissa says:

    Thank you for sharing and give your inspiring words.

  50. Blue Morpho says:

    Your story of dealing with your pain through the workshop is so moving. I was cringing, knowing how difficult it is to ask for accommodation – to have an illness force you to stand out, even from others with the same illness. I’m glad they were able to find a couch to make things easier for you, and I’m so sorry the pain is to wretched. Your planetary pals continue to pull for you, and send you all the good hopes we can.
    Adventures in Anxiety Land

  51. Anita says:

    Susan, you are an inspiration of strength, writing about your experiences. Know that you have many friends caring deeply about you and your family.

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