Monday, April 18, 2011

The Journey

I think the journey with my husband kenan's cancer has been the most important one I've ever embarked on. Though not about me directly, it certainly has impacted my life and how I view the world. I've danced around the subject in previous blog entries, but wasn't sure if--or how much--I wanted to write about it "for public consumption." But after his week-long stay in the hospital a few weeks ago, and learning the cancer had reached a point where nothing can be done except to manage his pain, it's obviously become all-consuming, and rightly so. I've been compelled to write about it--as I don't most serious issues in my life, but mostly in my personal journal.

When I met him 10 years ago, he had a below-knee (BK) amputation from when he was first diagnosed at 15. His leg was amputated as a "curative" measure, and he wore a prosthetic. I remember noticing it the first night I met him at a little neighborhood bar. But I also remember how comfortable he was with it, and quickly I forgot about it. Being a person who tends to bet only on sure things, dating someone who had cancer wasn't something I ever imagined I'd do. But when you fall head over heels, details like that seem to fade into the ether pretty quickly.

I remember the first year or so, I lived with the specter of cancer returning for no other reason than I was/am a pre-worrier. I'm not sure when it started in my childhood, but I'd learned that if I worried about every possible negative outcome in a situation, none of them would happen. It was exhausting, but effective--or so a part of my psyche thought, and that's just the way it went. But our life together was rich and full. Our relationship naturally developed into the kind I'd always wanted. Yes, it was hard work on both of our parts, but we knew the other was up to the challenge. I was part of true team, and am still very proud of that. We learned a lot from each other and grew into our roles as partners. I moved across the country with him after a year and a half together--something that wasn't very "me" prior to this relationship. Even more, we didn't live together in Chicago, but when we moved to LA, we lived in 100 square foot guest house--without incident. It felt so natural to be with him.

When his cancer returned and he was diagnosed in late 2009, the only viable option that might be "curative" was a hemipelvectomy, removing the rest of his left leg where the tumor made its home. It was a challenge, but I knew I was up to it, and wouldn't let him down. Thanks to the support of our amazing families and friends, we worked through it and came out the other side stronger and more committed to the importance of our relationship. Less than a year later, we learned the caner had returned, and worked with our oncologist to combat the tumors with chemo and radiation. Though he told us there was no curative measure that could be taken, we trudged ahead, facing each challenge as it came, and facing them together.

Just a few weeks ago in late March 2011, I took him for a radiation appointment. After they took him in to get set up on the radiation machine, a nurse rushed out a few minutes later, telling me he wasn't able to catch his breath and the doctor on call had been paged. I went in to find him sitting in his wheelchair wearing an oxygen tube around his ears. He seemed a little off kilter, but I thought maybe he just wasn't feeling well. The doctor escorted us across the street to the hospital where after getting triaged we spent the better part of 12 hours by the end of which they admitted him to further investigate the cause of his malady.

It was during this hospital stay we learned the cancer had proliferated to an extent that far exceeded any treatment. What they could do was manage his pain and keep him comfortable. I'd heard the word hospice before, but it never had the kind of connotation that led me to want to know more about it. Yet, there I was, sitting at his bedside, listening to the oncologist tell us about the home hospice option. It was surreal. Though not naive about what the potential challenges ahead, I never imagined that morning when I woke up that things would have cascaded so quickly. That I was getting "the talk" from the doctor that was reminiscent of a movie scene that would have the audience in tears. (The kind of movie I would never see, by the way.)

kenan came home a week later for home hospice care. The hospice team provided everything we would need in order to get him set up comfortably at home. I remember dreading his homecoming in some respects only because I knew what it meant. It was another adjustment I needed to make in order to accommodate and survive "the new normal". I will say the hospice group has been amazing, and as soon as I got the hang of how they operated (i.e. working diligently to manage/minimize his pain and give us medical and emotional support) I found myself much more relaxed having him home than I was when he was in the hospital.

Coming to terms with death is heady stuff, and there aren't classes I know of that teach you the skills necessary in order to tackle such dynamic and multi-tiered subject matter. But I have developed tools that have even surprised me. Until a few days ago, I wasn't even able to use the word "death" or "die". But I'm on a journey too. And I think by writing this blog, I'm learning to get acquainted with acceptance. And from what I hear, that's only the beginning of this journey.


  1. "What if" meets "why not". A love story from start to finish.

  2. The two of you will always be together, Ron. Remember that, if nothing else. You have truly shown what love is

  3. Wow, Ron. Powerfully written. I am so very glad Kenan has you in his life.

  4. My heart breaks with the beauty you've written here. Your strength and the poise with which you've walked this path is a constant inspiration. Thank you for sharing.

  5. Thank you all for your comments. I really appreciate them. I have loved writing this blog, but wasn't sure if/how I wanted to approach what's going on in our lives, but that's what this blog is for, and it's why I'm compelled to write. Thank you all very much.

  6. My heart simultaneously overflows with pride and aches with sorrow and pain for you both. Ken is a part of you, that can't change no matter what happens in the physical world. I've seen you grow, over the years, into that person who will keep him with you and I'm humbled. And you know that takes a lot.

    Your other sis

  7. Every day you have together has good in it.

  8. @Denise, that's true compliment if I ever heard one! Thank you for your words, kindness and love--now and over the years of our friendship.
    @Kathy, you words ring true. Thank you. They mean a lot, and they do serve to remind me.