When To Say When

sleeping boy and kitten

When we went to St. Louis Children’s Hospital in October 2011 and was told, “Your child has cancer”, naturally, the plan was to fight. To do everything in the doctor’s power to get rid of Sebastian’s cancer. So, that’s what we did, and Bastian was led down a path that consisted of chemo, radiation, bone marrow transplants, pain, nausea, more chemo and more pain. He spent countless days in the hospital, missed out on school and friends and birthday parties and swimming. He lost all of his hair, and a quarter of his body weight. The treatments made him so very sick. And all the while the scans continued to show no disease improvement. The treatments were not working.

In June, the side effects of the chemo and radiation caused him to have to get a urinary catheter due to damage in his bladder. Complications from the catheter landed him in the hospital for 12 days with several infections. Right about the time he was being released from the hospital, his docs gave us the treatment options available for him. After several discussions about what the options are, Sebastian finally tells us, he doesn’t want to do this anymore. He doesn’t want to keep making himself sick. He wants to stop.

Imagine making this decision for yourself, knowing that nothing you do will take your disease away, and everything you are doing is potentially causing more pain and more problems. Would you know when to say when? At some point, the desire for quality over quantity would present itself, and that’s where Bastian is.

We’ve known for a long time that we would be faced with this decision; I just didn’t think that Bastian would be the one to bring it up. The docs told us a long time ago that there is no chance of curing Bastian’s cancer, and that everything we are doing is an attempt to give him more time. After his last stay in the hospital, Bastian said he wanted to spend the rest of his time with the people he loves, not taking things to make himself sicker, and not constantly being hooked up to IV’s. He wants quality over quantity. His decision was not accepted by a lot people in his life, particularly his peers. They don’t understand how “he can just give up”; they think he should try every single thing possible. But those of us close to him know that this isn’t him “giving up” or “choosing to die”, this is him choosing to LIVE.

This is the ultimate act of letting go. Letting him make this decision, and follow through with it, means that we aren’t doing anything to slow his cancer growth, and that he will die from his disease. But letting him make this decision, and follow through with it, means he gets to live the rest of his life on his terms. And that is much more important to us.

Deciding to stop cancer treatments is a difficult and painful decision.  Have you experienced something similar?

This post was originally published on Lacuna Loft back in 2014 and is one of our most read!

A Different Kind of Self Care

self care

Through everything that’s happened this last month, the constant that I’ve heard from people is the need to take care of myself as well as my mother. I’ve been trying my best, but self care can be a broad, vague undertaking. What does self care mean? Is it as simple as making sure you eat and sleep? For me, my self care has consisted of binge watching Netflix when I’m physically drained, or cleaning my apartment, which is still a post-wedding disaster. Neither of those are helping me feel cared for, in fact my self care has mostly meant ignoring how I’ve been feeling through all of this.

That’s beginning to drain me.

I work really well in crisis. My mother broke her wrist a few years ago when we were in Ireland, and I didn’t lose my cool and got her help. I can go and go through stress, because it tends to make me work harder and be more focused. I have an inner strength I’ve discovered that I draw on in crisis, and I’ve been using it nonstop since we got her diagnosis April 13th.

It was that strength I had when sitting in the surgery waiting room for over six hours with my father, watching a board that only rarely updated itself on how her surgery was progressing. The strength I had when I was sitting awake and exhausted several nights in a row in the recliner beside her as she slept, because my dad and I couldn’t stand to leave her alone. The strength I had to advocate for her when the nurses were rushing her recovery, pushing her beyond her limits and she couldn’t speak up for herself. The strength I’ve had in giving up a job I loved so that my schedule was free to take care of her, while also planning my wedding from her hospital room as she was finally able to eat for the first time in weeks. The strength I had while watching her struggle to walk around my wedding two weeks later as everyone told me again and again, “Well she looks fine, so she must be recovered,” until I wanted to scream at them all.

That strength is finally beginning to wane.

Watching her struggle with what her life is going to be like for the next year, what she’s already had to go through in just barely over a month…

I’m spent. And I can’t be. I think the worst part is knowing that I can’t burn out now, I can’t give up, because she and my dad need me to continue to draw on that strength I amazed us all with during these last few weeks. But four weeks later, I feel like I’ve used all of it up.

I can’t watch her be in pain anymore. I can’t think about how I won’t be here through all of her treatments like I’d hoped, because I’m moving in October to Oklahoma with my husband. I can’t keep telling people that I’m okay, and that she’s doing great, because I’m not, and she’s not. No, the cancer is not going to kill her. No, it didn’t spread beyond what organs they removed in surgery. Yes, she will get through this and live to visit her first grandchild (born three weeks ago) and see my family grow (whenever we decide to start one).

But you know what? That doesn’t make any of this suck less. And lately, all I’ve needed was some self care. For me, at this moment, this means finally allowing myself to feel it, finally allowing myself to be spent and drained and depressed and overwhelmed and definitely completely not okay with any of this. For now, self care is allowing myself the freedom to give in to the impulse that’s been gripping me recently, the impulse to collapse right where I am and sob until my tears run dry.

And once I did that, I picked myself up, dried my cheeks, and felt a bit of strength return.

Self care is about more than making sure you eat and sleep enough while caring for someone else. It also means allowing yourself weak moments, so that you can continue having strong ones.

The Fork In The Fight: Navy Bean Root Vegetable Stew

Andrea and G have a lovely history together.  Go here to learn more about them, and to read the first three posts in their first segment of The Fork In The Fight series.  Look forward to reading Part 3: Introduction to Ayurveda later this week!

The Fork in the Fight: recipes for restoring our souls and thriving in the face of cancer

Part 2: Navy Bean Root Vegetable Stew

This is the second post in the second segment of the Fork In The Fight series.  In this three-part segment, we will be sharing a recipe for the soul in finding retreat in creativity, a recipe for the body with a delicious navy bean stew, and a recipe for the mind as Andrea introduces the world of Ayurveda. Stay tuned!  Check out Part 1: Recipes For Calm And Creativity.


The Recipe 

We are both soup lovers and this navy bean stew is no exception! It’s perfect for using the last of your winter root vegetables before spring seasonals arrive. Andrea’s best friend, who is vegan, told her this is the BEST recipe she has made her (and Andrea has been cooking with her for 10 years!). Even if you are tempted to substitute in some animal products (like cream or cheese), we dare you to be bold and try it this way first because it’s just that good. 🙂 It’s easy to add more later.

Navy Bean Root Vegetable Stew
(adapted from Gillian McKeith’s You Are What You Eat)

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Fresh ingredients chock-full of vitamins and minerals!

Ingredients

  • ½ lb. dried navy beans (or lima beans)
    • This will cook to 1lb. of cooked beans
  • 3 carrots, diced
    • Try daikon radish, red or golden beets, watermelon radishes, or a variety of turnips
  • ½  of a rutabaga, peeled and diced
    • Try jerusalem artichokes (sunchokes) for a nuttier flavor
  • ½ a red pepper, seeded and thinly sliced
  • 2 red onions, diced
  • 2 bay leaves
  • 2 tsp turmeric ground or 1 tsp peeled
  • 1 tsp coriander
  • 1 tsp fennel
  • ½ teaspoon cumin
  • ½ tsp ginger
  • ¼ tsp black pepper
  • 1 pinch Himalayan pink salt
  • Handfuls of pea shoots, arugula, thinly sliced kale, or a local green of your choice

 Directions

  • Prepare by soaking the ½ lb. of dried beans overnight (or for several hours) and cooking in a large pot of boiling water. Perfectly cooked beans are soft in the center but not split on the seams. Remove from heat and let the beans cool in the water completely. P.s. By starting with dried beans, you are eliminating the extra processing and sodium that can be found in canned beans.
  • While the beans cool, you can cut, peel, dice, slice and chop your way through all the vegetables.
  • In a large pot on medium heat, add the onions, bay leaves, and a splash of water, stirring occasionally. Once the onions soften, add the rutabaga, carrots, and enough water (or vegetable stock) to cover. Let boil and then reduce to simmer for 10 minutes.
  • Add the beans and remaining spices and simmer for an additional 10 minutes.
  • Top with fresh greens and serve immediately with a hunk of fresh bread.
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Share this simple, nourishing dish with your friends and loved ones!

Tips and Hints

  • If you are have leftovers and want something new, the soup does well with a bit of raw milk cheese and day old bread on the bottom of the soup bowl!
  • While the beans are cooking, you can roast the vegetables! This will bring out the sweet and nutty flavors that make the soup divine. Andrea suggests roasting with coconut oil salt & pepper

BONUS Recipe!

 Antioxidant Supplement ‘Jam’
(from William Siff of Gold Thread Herbs) 

A jar filled with antioxidant goodness.

Ingredients

  • 1 large mason jar with lid
  • 1 cup rose hips, roughly
  • 1 cup of pomegranate or blueberry organic juice concentrate, roughly
  • 1 handful goji berries, elderberries, and/or hawthorn berries
  • 1 pinch nutmeg
  • 1 pinch saffron
  • Citrus peels, to taste
  • Fresh ginger, to taste

Directions

  • Pour the rose hips into the mason jar until half way full and cover with juice.
  • Stir in the remaining ingredients and let sit for several hours until it becomes paste-like. If you are using seeded berries, be sure to let them soak in water.
  • Take 1 tablespoon every day! You can add it to a cup of hot water or onto a bowl of porridge.
  • The jam can be stored in the fridge for up to 2 months.

With love and gratitude,
Andrea and G

Put A Fork In It! Send us your comments, suggestions and food-fighting ways to support a healing life.

The Fork In The Fight: Breathing Into Self-Awareness And Ease

Andrea and G have a lovely history together.  Please enjoy the third post of a three post installment in their new series, The Fork in the Fight.   Check out Part 1: Our Story and Part 2: Butternut Squash Curry Bisque recipe!

The Fork in the Fight: recipes for restoring our souls and thriving in the face of cancer

Part 3: Breathing Into Self-Awareness And Ease

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In G’s story, she mentioned how her experience taught her to be her own friend and to be self-examining. In Yoga, the practice of swadhyaya, or self-study, is a Nyama, or daily observance recommended for practitioners. This looking inward can be beneficial to all humans, regardless of present tragedy or bliss. A safe way to practice is to find a comfortable seated position with the spine tall. You can use blankets or pillows to prop yourself up if needed.  Make sure you are warm (or at your preferred body temperature) and in a quiet space where you can be uninterrupted for 5-25 minutes.  Close your eyes. Start to notice your breathing. “Awareness is central to contemplation because it reduces the distance between us and that of which we are aware.” (Thomas Ryan, Prayer of Heart and Body) So often we are caught up in our surroundings that we are not aware of the feeling in body. As you notice your breath, be aware if it feels shallow or deep, easy or constricted. Also notice where you might be clenching — like the jaw, fist, buttox, pelvic floor, or shoulders. Do your best to release and let go without judgement.

Continue for as long as you have time — scanning the breath and the body, releasing, relaxing and letting go. You may find a few sighing exhales to be especially healing. You can carry this practice with you. In a challenging moment, even if you can’t close your eyes, notice your breath, your body. What can release and let go? Can you slow and deepen your breath, softening your physical presence to invite ease into your present situation? As you prepare to come back to the present moment, be mindful of the serenity you have cultivated, and take time to transition slowly and quietly to your next activity.

We are excited to explore our shared experiences of recovery, relationship building, and self-love with you. Stay well and take time for yourselves during this busy holiday season.

With love and gratitude,

Andrea and G