Long Walks & Purple Socks

Ken has been sleeping more and more, and my keyboard clicks away he has been sleeping 15+ hours. My mother-in-law (Mama Jo) arrived on Thursday evening after a few conversations updating her and the rest of the family in California about the recent changes I've noticed in Ken's condition. It was a big relief for me to have her here. Not only have these changes necessitated more energy and greater patience than ever before, but aside from that, I wanted someone else's eyes on the situation; and on him. Maybe the changes I've noticed weren't as drastic as I was thinking? Maybe I'm the one who is growing more and more confused? With his nuclear family so far away, I felt the great responsibility in keeping them up to date on changes in his condition. It was nerve-racking wondering if it was time to call them to come Chicago. Or now? Or now? Now?

Because of my co-caregiver, I had the opportunity to take a walk today. The last one I took was mentioned in another blog about a month ago--with a house full of guests and Ken, the director of all the organized chaos. Today I was getting itchy. With him sleeping more, there isn't much to do. Though I can sometimes dive into a project and remain distracted, today wasn't one of those days that would allow it to happen. Though the skies looked ever-threatening as they have so often this dreary spring, I headed out for my familiar two-mile route.

What a delight that most of my iPod selections were about true love, being adrift without it, and the tragedy of love lost. Thinking about the confusion Ken has experienced lately propelled me into a public display of "ugly cry." But I went with it as I kept hard-blinking the tears out of my eyes while trying to keep at a rapid clip. At that point, it became more of a challenge. How fast can I walk while my eyelids squeegeed away the saline. Good job, subconscious!

I'm overwhelmed. No doubt about it. Luckily it's rare that I can fully grasp the grand and reaching scope of the situation. There is some kind of safety valve in my brain that shuts down attempts after a certain period of time. Yet there are occasions even my ever-churning brain can't protect me from. Yesterday he threw me for quite a loop as I was putting away laundry. He called me into the living room to his bed. I was carrying his boxers and various colored socks to put away where they belong in his bathroom. "Remind me to talk to you about socks," he said. Based on his recent confusion, memory problems and hallucinations, I thought we should get to it. "Let's talk about it now," I chirped, smiling down at him. "The purples ones," he said, pointing to the purple knee socks with white horizontal strips and "grippies" on the bottom jumbled in my hands. "What about the purple socks?" I asked. "Those are the ones I want to be cremated in," he replied matter-of-factly. I didn't expect that. And aside from the fact I hate for him to worry about details concerning his own death, I wasn't prepared for how blasé he was about it. But after a phone conversation with a good friend I realized that's something he has every right to be concerned about and to express his wishes about. It wasn't him, it was me. I didn't want to have to be in a position to hear it.



On my walk today, I was hoping to find a photo to take of some beautiful spring landscapes. I saw plenty of them as I walked the tree-lined streets of Ravenswood. But none of them spoke to me. It was here on Lincoln Avenue where I saw this leveled lot that used to be home to a family-owned gas station (Phil & Sons) that I stopped without really thinking. Before I knew it, I was snapping a pic with my iPhone. It spoke to me. There was once something here. And now there is nothing. It's gone, cleared away. Even the cancerous bulldozer remains as an indication of what was responsible for razing what used to belong here. People probably walk past here all the time, and have no idea what used to be here. I hate that.

Step by Step

A friend recently likened dealing with kenan's terminal cancer diagnosis to a staircase. Each change in his condition defines the "new normal". But before this new normal is accepted there is shock, denial, pain, and then acceptance until the next "step" comes and the process is repeated. I thought it was simple and brilliant. It really described my experience. Sometimes these steps occur without any warning. It's more like stumbling down a staircase on roller skates then walking down one. Reaching out to family and friends is akin to grabbing the handrail to steady myself before placing my foot onto the next step.

I wasn't expecting the most recent step. I noticed over the past couple of weeks he was having moments of confusion and occasional hallucinations. As time passed, it seemed to be happening more and more frequently. I don't think it was as obvious to anyone else as it was to me. Not surprisingly, the performer in him pulls it together for company. But as we always want to put our best face on for guests, it's not surprising that the gifted entertainer and generous host in him follows that maxim.

But when it's just the two of us, I've found that he has one foot in my world and one in another--no easy feat for a guy with just one foot. For the most part, our days of intimate and deep conversations appear to be over. And for that, I'm profoundly sad. The loss of banter and in-jokes and non-verbal cues; subtle things that are integral to every relationship--and certainly to mine. It began a mourning process for me I hadn't really expected. And somehow made all of this very "real" for me. The "shock and awe" of seeing this change was difficult. It was like having the emotional carpet yanked out from beneath me; another linchpin in our intimate and uniquely beautiful relationship pulled out. It was destabilizing for me. I began to get my first pangs of "unfairness"--something I hadn't experienced before. I think up until this most recent step, I somehow felt I hadn't lost anything yet.

I still see glimmers of "my" kenny--which delights me to no end. It also hurts, knowing he used to be someone I saw all the time--up until recently. But when I sit next to him and touch his hand or cheek, it is my kenny. When I kiss him and tell him I love him, he says it back to me as he always has. It's still my kenny. When I watch him sleep, it's my kenny who is sawing logs.

The "new" normal, but still "my" kenny.

Blog Day Afternoon

(Ken booked ended by my folks on the left, and his folks on the right.)

It's a funny thing to be gay and fall in love in one's early thirties. Your personality is pretty much fully "baked". You know who you are for the most part, and have an established group of friends. This was the case when I met kenan. We both lived in Chicago, away from our families (coincidentally) so it took quite a while for me to meet all the members of his immediate family, and likewise for him to meet mine. What's even odder, that after almost ten years our sets of parents had never met each other--due mostly to geographical complications.

We'd talked for years about how well our folks would get along, and hoped that it would happen at some point--presumably our wedding or some kind of celebration. Their first meeting occurred in January 2010, and was under less-than-ideal circumstances. Both parents were present at the hospital during kenan's hemipelvecotomy surgery which was the big event that kicked off the most recent occurrence of cancer. On the one hand, it was so wonderful to have the families come together to easily to support us through such a serious situation. On the other hand, kenan wasn't able to witness their meeting or ensuing conversations, and I'm not sure I even remember much of it since I was preoccupied with worry about how he was doing, and wondering how many Xanax I could take without passing out or technically be considered an addict. I recounted the story to kenan as he recovered as best I could. It made him so happy to know I was being looked after by both our parents while he was undergoing surgery.

With his most recent diagnosis and coming home for in-home hospice, we've had the benefit of an incredibly strong support network. Our friends and family have stepped up behind any expectation to help us and support us. Ken's folks came immediately after he got home to stay with us in order to help out and spend time with us. When I speak with my mom she is a rock of support and knows when to discuss the matter at hand, and when to distract me with her razor-sharp humor and ridiculous and humiliating memories from my childhood. I am instrument she plays beautifully.

So it happened that while his folks were in town, mine were also coming to visit! I wish I'd had the time and wherewithal to be excited for days in advance. I did get excited the day of the gathering. I'd carefully crafted a meal (with some help from Costco) of chicken alfredo and spinach salad. The weather wasn't being as cooperative as I would have liked, but it was sunny for the most part. Unfortunately, it was only going to hit the mid-50s. That didn't keep us from getting outside though. When my parents called and said they had arrived, I scurried to collect Ken and get him outside to greet them. The last time they'd seen him was the day we came home from the hospital. He was not very coherent, and I was freaked out beyond measure. I was glad they would get to see the kenan they knew and loved. A short while later my in-laws arrived, and as soon as they entered the living room, both sets of parents got along famously. I would sneak sideways looks at ken as we both enjoyed watching the four of them getting on so famously--especially considering how painfully aware we were of each and every one of their flaws, faults and idiosyncrasies. But it was a great day, and a memory I will always treasure.

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.

iRescind

In a previous blog I lamented my iPad purchase, declaring it overhyped and underwhelming. So I happily returned it, thinking I was free from its touch-screen grip. However, it wasnt that simple. It never is with me. I am a lover of anything that "organizes." I had a Trapper Keeper in 1980. A DayRunner in 1990. A Handspring Visor Deluxe (Palm OS) in 2000. A Dell Axim (Windows Mobile OS) in 2003. A BlackBerry in 2006. An iPhone in 2008. My need for centralized organization is overwhelming. Something within me was determined to find a use for an iPad.

So after breaking up with it and realizing my feelings weren't fully reconciled, I wondered how we could give our relationship another chance. In the meantime iPad 2 had been introduced with no great "must have" features (in my opinion). Even better, I got an email from Apple letting me know the first gen devices were in "clearance". Ok. Reason número uno for a reconciliation.

I did a lot of research to find companion apps to desktop Mac programs I had. Syncing is very sexy, you know. And I found several. Reason number two! Let's see, I guess I should round out with a third. Did I mention it was discounted?

No doubt I wanted to want one more than I wanted one, but after spending a few days with her (yes, she's a girl...like a ship. A wonderful mini computer ship with a glossy touch screen) I began to understand how I'd use her. Reading newspapers, keeping myself organized and synced with my Mac, and even writing. Part of the deal was I told myself I'd have to use it for writing. That alone would make it worth it's weight in platinum. And it payed off. Like the know-it-all Genius at the Mac store said when I returned the first one, "You get used to typing on it. Just like you did your iPhone." Yeah. Yeah. It's actually not that bad, but does take some getting used to. This blog entry was typed wholly on my iPad.

Oh! Reason number three: paying less for the same thing you paid more for two weeks ago is also sexy. Very sexy.