Embraced
November 22nd, 2010
I don’t remember what had sent us to the hospital that particular time. Sometimes it was a spiked fever, sometimes it was uncontrollable pain or vomiting. But here we were again, my brother’s thin body racked with the perpetual pain he endured at the end of his life. Jeremy hated lying down and usually prefered to get out of bed and shuffle around the room, even if he couldn’t really go anywhere.
As we were waiting for the doctor to come and tell us what the next steps would be, I sat there with that familiar feeling of helplessness. Should I talk? Should I be quiet? I searched him for a cue. He started feeling nauseous, and I knew that meant he needed silence.
He leaned over the bedpan heaving. The violent movements jarred his aching skeleton, causing him to wince. I saw the sickness wash over his frail body.
I couldn’t stand to see this suffering. I hated doing nothing, so I rushed off the chair and firmly embraced him.
“I got you,” I told him.
He stopped heaving. His face relaxed. He looked at me.
“It stopped,” he said with wonder. “How did you do that?”
I was equally surprised. “I don’t know. But I’m so glad.”
My brother died a few months later, on November 23, 2007.
Last Wednesday, I had my very last treatment. It went well except for a minor stir when the nurses and doctor’s office took a good hour to sort through whether I had finished getting treatment last time (“You’re done! Go home!”), whether I had two more treatments (“I’m so sorry. I know you were looking forward to being finished.”) or whether this was, in fact, my final infusion. Nothing, it seems, can be without some drama.
The next day, I left bright and early for the Life Beyond Cancer retreat in Austin. I learned about it from a blogger/twitter friend Jody Schoger and a Facebook friend Beckye. One of them invited me initially, and hearing about it from the second convinced me I had to go.
I hesitated to travel so soon after treatment. I knew it would follow this last Herceptin infusion, which for many people, is a non-event. Compared to chemo, they are right. Nonetheless I get a 24 hour Herceptin flu. Yeah, I know how to have a good time.
What an incredible way to transition into post-treatment survivorship. The first friend I made on the shuttle to the conference center shared my love of running and the Mexican rock band Manà. We are Scrabble geeks and have kids with similar ages. I identified with her in so many ways, and then she matter-of-factly told me that she is in the midst of a recurrence. For a split second, I froze up when she told me. But I moved past my fear, enjoying her humor, warmth, and conversation.
The retreat focused on healing mind, body, and spirit. There was yoga, qi gong, healing walks, delicious healthy food, and spa treatments. The speakers were survivors and nurses who spoke about health, sex, survivorship, and advocacy. I confess that if I know I am meant to be inspired by a speaker, my inner adolescent is poised to come out and act beligerent. These folks all passed my B.S. test and touched me, as the room filled with the laughter and tears of recognition.
Socially, we were able to let it all hang out. Not only were we no longer fish out of water, we all, as one woman put it, swam in the same aquarium. I didn’t have to explain my compression sleeve. I didn’t have to worry about folks assuming I was all better when they heard I had just finished treatment. Nobody pushed their food around their plate during meals, avoiding eye contact out of awkwardness, as you shared some of your harrowing tale.
There were women who had gone through or were still in the midst of all kinds of cancers, with their journeys taking a lot of different shapes. There seemed to be a shared determination to live authentically. We understood each other’s PTSD and could easily fall into conversation with any other participant. I stopped freezing up when women told me they had metastatic disease or had dealt with recurrences. They became role models for living courageously and fully. It was both comforting and exhilirating.
Saturday night was November 20 on the Gregorian calendar. But it was 13 Kislev on the Hebrew calendar, the anniversary of Jeremy’s death. We light remembrance candles for our loved ones at nightfall.
Jeremy died around 8 PM on 13 Kislev three years ago. After he took his last breath, the crowd of friends and family who had gathered to be with him stepped outside his little apartment to give his parents and his wife some quiet last moments before the hospital came to take his body away. It was his wish that his body be studied to benefit the next person who had his disease. He had what is called an “orphan cancer,” meaning that not enough people had it for there to be much useful information. As we stepped into the clear night air, tears streaming down our faces, we noticed the full moon shining above us. It gave us comfort, since Jer had always had a deep connection to nature.
Since the Hebrew calendar follows the moon, I looked up Saturday night as the retreat was drawing to a close. The sky was not clear, but I could see the light of the bright full moon from behind the clouds. I was with April, one of the first people I met through my blog. What a world, we were saying, that we could now spend time together in real life.
My brother was the one who got me online. After he died, I needed more of him. I needed pictures, connections to his friends who had become my own as we shared the difficult and precious last months of his life. One of them told me to get a Facebook account. I did. The rest, as they say, is history.
My life online brought me to this retreat via Jody and Beckye. My life online gave me friends like April, who I now stood with underneath the 13 Kislev moon, sharing the story of my brother.
And I, too, felt embraced.
Maybe Jeremy saw my unsteadiness as I headed into this new phase of survivorship. My love for him certainly led me here.
I relaxed into this feeling and heard the words, “I got you.”
This is a video one of Jer’s friends made. Jeremy reads a poem he wrote at the end of his life, as he came to terms with his own death.
The images are of his life’s work and passion.
I miss you, brother.
This entry was posted on Monday, November 22nd, 2010 at 10:03 pm and is filed under Survivorship. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.
Lani,
This is a post I will read again. It is rich with wisdom, love, sorrow and hope. I’m grateful to have been swimming in the same acquariam with your this past weekend, and to know that for you, it was everything we had hoped. And to see how you moved through the fear of metastatic disease? That was incredible to witness.
Love
Jody
Qigong—Chinese mind/body exercises–helped me immensely in my successful battles with four bouts of supposedly terminal bone lymphoma cancer in the early nineties. I practiced standing post meditation, one of the most powerful forms of qigong–as an adjunct to chemotherapy, which is how it should always be used.
Qigong kept me strong in many ways: it calmed my mind–taking me out of the fight-or-flight syndrome, which pumps adrenal hormones into the system that could interfere with healing. The deep abdominal breathing pumped my lymphatic system—a vital component of the immune system. In addition, qigong energized and strengthened my body at a time when I couldn’t do Western exercise such as weight-lifting or jogging–the chemo was too fatiguing. And it empowered my will and reinforced it every day with regular practice. In other words, I contributed to the healing process, instead of just depending solely on the chemo and the doctors. Clear 14 years and still practicing!
Bob Ellal
Author, ‘Confronting Cancer with the Qigong Edge’
What a beautiful story, and what a beautiful tribute to Jeremy. *hugs*
Lani,
How beautiful. Sister-to-Sister, in more ways than one, I am thinking of you and your brother today and always.
xoxo
Amanda
Lani, thank you for sharing such a touching post. You are always in my thoughts and love. xoxo Laurie
Hearing his voice again, I cry. Knowing what today is, I cry. You and I each held Jeremy close when he was wracked with pain and shared the warmth and relief that comes with intense love. Last night, as I drove home from work, I asked Jeremy to help me through my pain and from behind a local mountain the full moon rose slowly and I thanked him, because I know he had a hand in the timing of the moonrise when I needed to feel his presence. As you heal, Lani, Jeremy holds your hand and we all hold your pain as we hold each other’s pain as well. Such is the power of love.
Lani,
Meeting and talking with you was one of the highlight for me of LBC. I was thunderstruck that we haven’t interfaced much through this shared maze of social media and don’t know why, but I was aware you were coming and worried about you when you hadn’t arrived. Our shared aquarium was a profound experience for us all. Heal well, my friend.
Love,
Brenda
Lani, your beautiful words helped me know you better and start to know your brother. I appreciate anew how being open and honest about what life deals us can make us all better people.
Zichrono l’vracha, may Jeremy’s memory be for a blessing to all who knew him.
Wow, this is absolutely beautiful. Thanks for sharing.
Oh, and I’m glad you moved beyond your fear of metastatic disease. I’m a metastatic breast cancer survivor and my life’s goal is to bring hope and inspiration to people by sharing stories of people who have overcome “incurable” cancer.
Beautiful, Lani. Just beautiful. I’m honored to know you.
<3
Lani, I am sending you a virtual hug on the occasion of your final treatment. I had my final chemo infusion this past Monday. I can relate to your feeling tongue-tied about what finishing treatment means. I can’t believe that putting one foot in front of the other, thousands of times, has actually gotten me to the point where I walked out of the infusion center without a sheet of future appointments.
I hope that you had a peaceful Thanksgiving and that you were comforted by memories of your brother. I wish you ever-growing health (and hair). Personally, I’m looking forward to eyebrows and eyelashes in 2011. And to meeting you in person one of these days — at a cancer survivor retreat, Desiree’s house, anywhere!
Love,
Sarah
yes! what a great wish. right back atcha. xo
I’m new to your blog and find this post to be very touching. I’m sorry you lost your brother. You must miss him so much. He will always be part of you, nothing can change that. I’m glad to hear you finished treatment. I recently finished chemo as well and am now waiting for the return of hair, eyelashes and energy. Hope you can visit nancyspoint sometime. Good to find you blog.
This gave me all the feelings.
Thanks for sharing your experience and your brother with us.