Small Victories

The other day, I had a rare luxury. Ken was insistent upon taking his folks and aunt who was visiting for the afternoon for a trip to Michael's to pick up some craft supplies for one of his several current projects. Everyone seemed to be on board. I asked about my role in this adventure, and was kindly instructed that it was a gift for me...to give me time alone at home. The gesture was supremely sweet and so appreciated. "Alone time" is something I'd grown used to not getting much of--or rather, redefining it as early mornings while the house is still quiet.

I wasn't quite sure what to do with myself, but first priority was sitting down and giving my essay "Bully for Me" a final read through before submitting it to the 80th Writer's Digest Competition. I'd begun work on it back in February, and worked it feverishly through the middle of March--until Ken's hospital stay put the brakes pretty much anything that wasn't about him. But most of the heavy lifting was done. It's a short and (perhaps?) humorous account of a bullying experience in high school that has stuck with me in many ways--for the better--to this day. It was a struggle to keep it under the 2,000 word maximum, finally coming in at 1,995. It was also real challenge to figure out how to tell the story, but one of the most enjoyable kinds. Were it not for a the deadline I could have spent months and months--perhaps years--kneading it, and stretching it, and re-rolling it.

I'd completely forgotten about the May 2 deadline with everything going on--until my trusty iCal alarm reminded me. It was later that afternoon, during my gifted "alone time" that I was able to give one final look-see and submit it. I have high hopes that it will be highly regarded, but no expectation of placing. I won't hear (or not hear) until October. And I'm still trying to figure out if I can publish it in my blog or if that is some kind of violation.

Regardless, another step in my writer's journey has been completed. Thanks to my hubby.



(We took a long walk the other day with Ken's folks. I was thrilled to see such a thriving oasis of springtime goodness!)

ctrl+alt+delete

I took a walk the other day. It was the first walk of what might be called "spring"--were it to actually show up. Rather than taking the opportunity to run errands or accomplish anything, I was acting on the advice of my sage therapist who suggested taking time away each day--just for me. The house was full of family and friends--which was wonderful. But it was getting a little chaotic for me, and I was getting a little twitchy. I needed a ctrl+alt+delete moment, so I put on a sweatshirt and took a two and half mile walk through the neighborhood on a route I'd created several years ago and never seem to deviate from. There are always new things to notice that usually make the walk interesting. It was freeing, I have to admit. And I enjoyed it immensely. I wasn't sure what to do with so much undirected time, but after I stopped trying to figure out what I should be thinking about, I let my mind wander as I surveyed the scenery of my walk.



Spring is trying, at least.



Seeing spring slowly return conflicted me in a way I would have never thought of before. On one hand, it was comforting to see the cycle continuing and watching objectively as the flora was reborn, coming out of a long winter's sleep,and knowing steamy days of summer were getting closer. On the other hand, it was hard to know that things--the world--kept moving forward while in so many way's mine wasn't--and wouldn't. I felt a slight tinge of jealousy. I would like to say it gradually faded away, but it didn't. Though after I acknowledged it, it seemed to bother me less.

I had recounted to my therapist how lucky I was to have such supportive friends and family surrounding me. Ken's folks came from California to spend time with him and help me out. Though staying with relatives nearby, they come over every day and tackle the myriad projects Ken has outlined. "It gives me a chance to get away," I said proudly. "What do you do when you get away?" she asked, eyes looking over the tops of her glasses. "Errands," I said.

It was here where I learned that the time away that I feel I need every day needs to be a little more "me" centric--which I get. Caregiving comes with a lot of responsibility and pressure. "But once I went shopping...for clothes...for me," I eagerly interjected. "Because you needed them?" she asked. "Yes," I groaned.

I'm not certain that free-form "me" time is something that is realistic to get every day, but I do see her point and point of view, and I trust them both. If this Chicago "spring" weather would learn to cooperate walks could easily be a part of my daily routine, in addition to getting back to the gym.

Something else I've learned in talking with my therapist: I'm gifted at "intellectualizing", which is a word I never imagined I'd be associated with. It sounds so...intellectual. I have to admit, I did take it as a compliment. Any sentence with "you" and "intellectualize" couldn't be anything but, right? Well, damn Wikipedia! "...a defense mechanism where reasoning is used to block confrontation with an unconscious conflict and its associated emotional stress, by 'using excessive and abstract ideation to avoid difficult feelings'.[1] It involves removing one's self, emotionally, from a stressful event."

Well, color me intellectualized! I've never done "this" before. Never been in this position, and like anyone, I'm just doing what I do the best way I know how. That being said, I do find it fascinating how your brain decides how unfamiliar types of situations are going to be handled. Like a board meeting of all your feelings is convened by the brain for each new situation and told to "take a powder" in this one. Brains are badass. But I do accept the challenge to do some work to better connect with my feelings when appropriate, as I see the benefit of such a defense mechanism, and I'm sure my brain employed it for good reason.

So, though not a compliment, not an insult either. Just an observation. (See, I can intellectualize here too in order to avoid feeling defective about being told I'm an intellectualizer). Wa-BAM!

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.