Category Archives: Kat

More so

Yesterday was Thanksgiving. Getting through the day was not as hard for me as I feared, (speaking only for myself). Maybe it was because I steeled myself for the “big day”… the first holiday… By “steeling myself”, I do not mean that I turned off my emotions. I mean that I prepared myself to accept whatever came, to fall apart or not. My default behavior is to try to make other people feel comfortable. I recognized this and decided I did not need to do this. I could let those around me deal with my emotions however they needed to. But the big emotional crash didn’t happen. To be sure, I thought of Kat often and I missed her terribly, but yesterday was not overwhelming for me.

Today, however, the grief feels particularly tender. I am not sure why. It has been two months since we walked her home and the date kind of sneaked up on me. I am sure the slower pace of the holiday weekend has played a part as well. For whatever reason, I am missing my baby girl. Sure, she was 26 years old, but she will always be my baby.

I have written before how this grieving process seems strange and unfamiliar. The unfamiliarity is mostly about how it comes when I least expect it. As time goes on, I am finding  a familiarity too. I have felt these feelings before.  Kat’s death is not my first loss. It is by far the most significant loss ever in my life. The feelings resulting from the loss of Kat are echos of much smaller, less significant losses. And why not, I am the same person I was. I did not change when Kat died so much as I became “more so”.  The little things feel bigger. The irritations are more irritating. The time flies by quicker. The joys are more precious.

Seeing the view from the end of Kat’s life made the important things so much sharper for me. I still get lost in the daily activities of life, but I don’t stay lost for as long. I recognize the BS more quickly; the “important” have to’s and ought to’s. I am reminded that life is short and precious. May that awareness be ever present.

Bananasaur?

If I don’t write it down I’ll forget it… Silly as this is…

Kat showed up in my dreams last night. She was about 5 or 6 years old. I was sitting beside her bed. She was on the bed on her knees with her head hanging down over the side. She asked me to explain to her again how bananasaurs evolved.

Voting for Kat

I value quiet.

I value thoughtful, heartfelt words whether I agree with them or not.

I abhor the noise of commercials on TV or radio.  When I watch network TV, which is rare, I skip the commercials. I rarely listen to commercial radio. So I haven’t seen any political ads. None!

BUT… I do read Facebook and the senseless vehemence from my friends on the left and the right has been ridiculous. Do folks just turn off their brains when they talk politics? (Interesting TED talk on why).

I did my homework, taking time to read up on the candidates from the local judges to the national offices. I thoughtfully created my cheat sheet and had it ready today with all the choices clearly marked except President. I simply could not decide who to vote for for President. That statement will likely cause half of my friends to be shocked one way, the other half will be shocked the other way and the third half won’t even read this, so they will never know.

On the way to the polling site, I thought of my good friend, Dawn, who is suffering from cancer. (Have I told you how much I hate cancer)?  I wondered if Dawn had been able to vote. It is impossible for her to get out these days, but I hoped she was able to cast her ballot. My thoughts drifted to Kat and how she would not get to vote in this election… another addition to the long list of injustices from cancer.

Kat was passionate about a few topics and some of them were political. As ambivalent as I was about my choice, there was no question about who she wanted to be the President of the United States. Right there in my car on the way to the poll, I decided that I would let Kat decide my vote for President. I never felt better about a political choice.

Kat, I miss your passion about making the world a better place. I miss you.

The Pause Thing

This grieving process is so strange, so foreign to me. Much of the time, I just feel hollow… empty… Jeanie said it felt like someone drilled a hole in her and sucked out all the life energy. I feel that too. It is as if my blood is water.  Do not get me wrong. It is not always like that. I am functioning. I put up walls to compartmentalize my life so I can keep moving, but inevitably the walls that seemed so sturdy melt away like so much warm wax.

So many things remind me of Kat.

Reading time has been a premium for the last couple of years, and now that I have more time to read, I can’t seem to focus for long. However, tonight I finally finished reading The Source, by James Michener, which I started months ago… maybe even a year ago.  Like the other Michener books I have read, this one takes place in a singular place and tells stories of the peoples who lived there over time. This book is set in the land we now know as Israel beginning about 12,000 years ago and coming up to “modern times” (the 1960’s). I highly recommend it.

As I was reading tonight, I was reminded of a fond memory of Kat.  When the kids were young, it was my job to put them to bed. That generally meant telling them a bedtime story or reading to them. Kat (then Katie) had just graduated from “short stories” to her first chapter book!  We were reading Riverboat Adventures by Lucy Kincaid and when we finished the chapter for the night, Katie said, “Wait and I’ll get the pause thing.”

Wondering what in the world she was talking about, I simply replied, “Okay,” and watched to see what she would do.

She left the room for a moment and returned with a bookmark, also known as a “pause thing”. She had cleverly compared in her mind the idea of stopping in the middle of a book with pausing a movie on the VCR.

I miss you, Katie.

Finding Tag

We didn’t make a grand public announcement, but sometime the week after Kat died (9/23), her kitty Tag went missing. We were not happy about it, but having never owned a cat, we relied on the word of the “cat people” in our lives. We trusted them that he had found a good hiding place somewhere in the house and that he would come out of hiding as soon as it got quiet. There had been so many people coming and going and making lots of noise, so it was understandable that he would be hiding.

After Kat’s service, Tag was still missing and it felt like a double whammy. Several of us went on a thorough room to room search and did not turn him up anywhere.  At this point we were pretty sure he was no longer in the house. We were both pretty upset about this. Tag was a part of Kat that we were looking forward to keeping with us. On top of that, we were feeling guilty for not taking good care of him like we promised. There was nothing good about this turn of events.

We followed all the advice that friends had given us: I found the info on Tag’s microchip and reported him missing. We put some of Kat’s clothing and Tag’s toys on the front steps and in the sunroom. We posted his picture and story on our neighborhood’s Facebook page. We were grateful for friends who covered our neighborhood with fliers.  Jeanie decided that he’d be more likely to come into the sunroom than the front porch, so she put his litter box, toys and Kat’s clothes back there and we left the door ajar so he could get in. He wouldn’t be able to get all the way into the house, but he’d be under cover. We put water out for him, but no food. I’ve seen ‘possums in the yard and I wasn’t crazy about the idea of feeding them.

Days passed with no sign of him at all. I mentioned letting Kat’s landlord in Asheville know in case this became one of those stories where the pet found its way back home. In actuality, Jeanie and I had both just about given up all hope of ever seeing him again. Then on Thursday, October 4th just as I was drifting off to sleep, which had not been very good the last few weeks, in the wee hours of the morning, Jeanie texted me, “I just saw a black cat in the sunroom.” I came downstairs and she told me when they locked eyes, he beat feet out of the room and back into the wild.  I suggested that we add food to the enticements, so she put some of his dry food out. The next morning some of it was gone. I replaced what was eaten with a single layer of food on the bottom of the dish, so we could tell how much was gone and added a floor lamp so that we could see him better. At this point, I was pretty sure we had Tag and hopeful we could catch him.

Thursday night, we were out at the store and when we returned, there was a little food missing. I was looking at the dish through the sliding glass door and telling Jeanie, when he came out of hiding under the sofa and darted out the door.  It was then, that I decided we needed to shut the door to the sunroom while he was in there.  The problem is that he didn’t stay in there very long and he would be able to see us sneaking up on him. The one time I saw him in there, a neighbor turned on their porch light and spooked him.  I let him have Thursday night to get comfortable and I learned how to watch for him better. The best vantage point was from the upstairs bedroom. Oh how I wished I had night vision goggles. Watching for this black shadow to move was tiresome. I felt like we should be playing the Mission Impossible theme.

On Friday, we borrowed a humane small animal trap to get him. Jeanie bought his favorite wet food (nasty gross stuff) and I baited the trap. Jeanie had driven up to meet Danae and bring Molly to our house later that evening. I was hoping to have a kitty in the trap when she arrived.  I watched for him and when he went in, it was clear that he was not going in that trap. The trap was a small, confined cage and there was no way he was entering it. He ate the other food that was intended to lure him into the trap and left. I got this on a video with my phone.

I realized that plan A was still our best option. The whole sunroom would have to be the trap and I would have to be the one to spring it.  I put some more nasty wet food out and rearranged things to try to get him further into the room, then I went upstairs to wait. As soon as I saw him go in, I ran downstairs and was just about to go out the front door when I heard the garage door open. Jeanie and Molly were coming in! Rats!  So I stopped them and tried to get around, but Tag was already gone. Sigh!  Not sure if it was because I took too long, or if the sound of the car pulling up or the garage door spooked him. In any case, we still didn’t have a kitty.

After we got Molly in bed, I put some more food out and setup in my perch to watch for the “fuzzy little bastard” (Kat’s nickname for him).  I saw him prance around the yard a bit, but it was well over an hour before he approached the room door again. When it was clear he was on his way in, I ran downstairs, out the garage door (which was still open), around the side of the house and into view of the sunroom. I couldn’t see him, so I wasn’t sure if he was still in there. I crept slowly towards the door and then we saw each other. He was so surprised, he didn’t know which way to run. I ran for the door and shut it. He went ballistic! Poor thing was frightened completely out of his wits. Our sunroom is attached to the house on one side and the other three walls are simply sliding glass doors, which were open to the screens. He climbed up the screens to the ceiling twice (ripping them as he went) the second time he jumped from the ceiling into our Ikea lamp (it’s the droopy one with the paper shade) and it disintegrated from his claws.


Jeanie was watching the whole thing from inside the house. Her response was, “I saw it happen, but I still don’t believe it!”  As soon as he stopped flying, I opened the door and stepped in. I spoke very calmly to him as I walked around the room shutting the sliding doors over the screens.  Jeanie was desperately trying to get my attention to show me that I had not completely shut the door when I came in. I finally saw it and Tag trying as hard as he could to open the door just a little more. I firmly closed his final opportunity for escape.  Then I sat down and Jeanie came out. We just spoke softly to him for quite a while without trying to approach him, just letting him calm down in his own time.

After about 15 minutes, he was crouched behind the couch and I reached out to touch him. I was surprised that he let me touch him. Not too much later, I scratched him behind the ears and before long, he was actually climbing in our laps!  The whole time I was posting a play-by-play on Facebook, so I know exactly how long it took. At exactly 11:05, I posted “I win!”  That was after I caught him and before I went in the sunroom. By 11:45 he was eating the rest of that nasty food he loves so much and was climbing in our laps by 11:49. I was very surprised. When I saw him freak out, I thought it might take days to get him inside.

We decided to move him inside to the temporary downstairs bedroom where Kat stayed. He wasn’t interested in being carried, so I let him walk into the house (not knowing where he might go). He went right into the room we wanted him in with his toys and food.

He seems to be glad to be with us again. He is climbing on the back of the couch while we watch TV. The one thing that seems to disturb him is when the people in the house are in different rooms. For instance, Jeanie was downstairs when I came up to the office to type this tonight. He came up here and gave me a piece of his mind!

It might be completely irrational, but it feels like we got a little piece of Kat back.

The Room Built With Love

In order to setup this story, I offer this extremely abbreviated version of a very long and arduous journey: Our youngest daughter, Kat, has been fighting cancer for the last year and a half. If you want to know more about that journey, click here.

Last week, in the hospital, Kat’s legs and feet began retaining fluid and swelling. When she saw this and remembered last year when the swelling prevented her from walking well, when she had to be carried up and down the stairs. She cried softly and said with resignation, “I can’t believe this is happening. I do not want to be carried up the stairs again!”

Each of us has emotional triggers; words or situations that cause us to predict what is coming based on our past experiences. Then we feel based on what we believe. Kat believed this was coming and was upset because there was nothing she could do to stop it. I have my own emotional triggers, but this was not one of them. I could see the passion in her desire and I resolved to never carry her up those stairs again!  But how? All of our bedrooms are upstairs.

The key was to prepare a room for her downstairs. The room I had in mind has been transformed several times already. First it was a computer room, then a formal living room, then a playroom. The room was wide open to the foyer, so it offered no privacy at all. I imagined that if we could temporarily wall off the large opening with a closeable door, it might just work. I imagined how that might be done and thought of how to make it happen. I planned to start working on it as soon as I got home, but on Saturday, Kat decided it was time to stop the chemo and come home with us. Suddenly I was out of time. It could not wait until I got home; this remodeling project needed to be completed right away!

Sunday morning, I sent a text to my best friends explaining the situation and asking if they knew anyone who could help. They immediately went into action. I was excited to learn that one friend’s father-in-law was visiting (his reputation for craftsmanship precedes him). I described the ultimate goal as being privacy for Kat without having to go upstairs and trusted them to make it happen. After some quick brainstorming and a few questions back and forth, the plan was complete, the materials were purchased and the work began. They thoughtfully sent photos so we could enjoy the progression of the work. I told the story and showed the pictures to Kat’s nurse. Word spread and the staff was just amazed. The phrase I kept hearing was, “No way!”  In a few hours, the work was done!

Now Kat is home. She is comfortably settled into what is now the largest bedroom in the house. The representative from the medical supply came to install her hospital bed and other sundry equipment. He said he has seen a lot of modifications made for family members to be comfortable at home. However, he had never seen anything of this magnitude.

Sometimes when somebody loves you
Miracles somehow appear
And there in the warp and the woof is the proof of it
– from Charlotte’s Web (the movie)

Building a wall is not a miracle. The miracle is in the loving friendship of our community.  This is just one miracle story among many. So many folks are weaving their threads into our lives to support us with gifts of grace, prayers, well wishes, lawn mowing, meals, moving help… Much thanks.

Cancer

Cancer.

Becoming harder each day to push back the inevitable pressures of life; the pressures common to us all. This awful disease unsatisfied with being compartmentalized. Breaking all barriers, demanding its own

and everything else.

A cancer of attention, a cancer of emotion taking every spare breath, every free moment.

Cancer itself annoyed at the prospect that attention might be paid to a friend, a car repair, a moment of peace with a loved one, a longing for normalcy. Vacuuming up all emotional energy. No patience. No margin.

Like physical cancer that disguises itself as a normal cell and grows with a vengeance, this parallel “cancer” takes normalcy and turns it inside out. Nothing else matters!

Surprised… a moment of calm. A butterfly visits the lantana. I planted that lantana next to the vegetables; the basil that made so much yummy pesto, the tomatoes that need no explanation. Butterfly dips its straw in and sucks on its lantana smoothy. The crickets chirp. Clarity, sanity… for a moment.

The moment snatched by…

Cancer.

Tick Tock

Life goes on one moment following another. The predictable rhythm of the second hand, the rising & setting sun, the seasons… Tick, Tock, tick, tock… lulls us to sleep. When asked how we are doing, we automatically answer, “Same old thing. New day.” Then something happens that shakes our world to the core.

Last Friday evening, dear friends of ours lost their grandchild, a four year old girl who died in a tragic accident. Shocking! Frightening! A deep sadness has taken over. So many feelings & wonderings floating around in my head. Most of my questions begin with the word, “Why”.

I am awake, alive, feeling again! Reminded once again how wonderfully precious is life.

And how terribly fragile.

Tick, Tock, tick, tock…

Wish I Didn’t Know That

If I had only known how long it would take me to finish painting the bathroom I would never have started it that day. The “popcorn” ceilings in my house are in horrible shape and cannot easily be painted. I knew they just need to be scraped off and finished flat, but was afraid it would be too big of a job for me. I decided to do the little bathroom downstairs as an experiment exactly one year ago today. It was a Friday evening after a long work week, but I really wanted to get it done. I got about half of it scraped before stopping for the evening to relax with Jeanie. My intention was to finish it over the weekend (or so I thought). Not long after I stopped for the night, Jeanie’s phone rang. It was Kat’s doctor telling us that we needed to get to Asheville right away. She had been in pain for quite some time and now he was concerned that she might have cancer.  In shock and tears, we threw some clothes in bags and frantically flew out the door. I drove and Jeanie phoned loved ones. Thus began the craziness that has been the past year.

The next day, my Facebook status read:

Photo taken from Kat's room at Mission Hospital April 2, 2011

We were in the hospital with Kat with no idea what was wrong. By this point we only knew that we didn’t know anything for sure. The doctors were telling us that it could be cancer, but it also could be something else entirely. We were unaware that we were just beginning a journey that would reinforce over and over how little we really understood. Desperately seeking help, we hit walls again and again. Baby steps forward and baby steps backward.

Before I get personal, I feel the need for a reminder that this blog is about me, my ideas, my feelings, my journey through life.  I don’t in any way mean to say this journey with Kat has been all about me. It is just that my skin is where I live and this is the story as seen from within that skin.

This journey and others throughout the last year have been the hardest of my life. It has been taxing physically, mentally, emotionally, spiritually and financially. I have faced fears about life and death, love and rejection, embrace and abandonment. I have experienced fear, despair, sadness, disappointment, anger, frustration, loneliness, judgement, gladness, surprise, amazement, joy, grace and peace.  And each of those descriptive words has countless stories behind them.

On this auspicious anniversary, a few events stick in my memory…

  • The awful night of that call on April 1st. The love, concern and support that we felt during the drive there.
  • The horrible way the doctor first told us he suspected she had cancer and the uncaring way he simply dropped Kat as a patient.
  • The way Karyn cared for Kat so sweetly in Asheville.
  • John and Tracy dropping everything in their lives to come and be with us in Asheville.
  • Getting to witness Jeanie as she used her super powers to get Kat in to see Dr. Batchelor so quickly.
  • The healing compassion of Dr. Batchelor.
  • The night in the Emergency Dept when Kat’s pain was so bad and the pain meds were not helping. It was so bad that I had to excuse myself from the room because I could not stand it any longer. I felt  bad for abandoning her, but I knew that I would be physically sick if I remained.
  • The awful pain Kat felt from the potholes on I-85 between here and Duke and how impossible it was to avoid them.
  • The temperature extremes we endured to keep Kat as comfortable as possible.
  • The despair that day in June when we almost gave up.
  • The call from Dr. Batchelor on his day off from his home phone giving us a renewed hope (on that day we almost gave up).
  • The day we received the final diagnosis of PNET.
  • Friends and neighbors who so generously helped carry Kat up the stairs in her wheelchair.
  • The angel who pays Kat’s apartment rent every month!
  • The amazing change for the better when Kat began chemotherapy
  • The F–k Cancer (and Y–k Cancer) ball caps Danae made for Kat and her sisters
  • The day Kat “tried the stairs” to see how high she could get. I was in the other room and she called out to me that she needed my help. when I ran into the room, she was at the top. What she “needed” was for me to bring her bag to her. We never again had to carry her up the stairs.
  • The “race” between Kat and Erin in the hospital after her surgery.
  • Kat’s first time “sneaking out” for a drive.
  • The Ani concert and backstage passes that Melody arranged.
  • Talking with Kat about her plans for the future. The joy of knowing that Kat envisions a future with herself in it.

I am thankful for Kat’s degree of health. When I think of where we were with her for the three months of April, May and June of last year; the physical pain, the disability that she was experiencing, the frantic quest to beat the clock and find help for our daughter, I am grateful that she can walk up and down stairs alone, drive herself to the store, carry on a conversation about topics other than her pain. I am grateful that she is alive and that her pain is controlled with so much less medication than before. I am also aware that we still don’t know what we don’t know. This is a dreadful disease and it is still inside “my little girl”.

That first day, I said, “I wish I didn’t know that.”  There are so many things I have learned that I “wish I didn’t know”.  I am much more in touch with and aware of the ubiquitous pain and suffering in the world than I was. Many times when I tell someone about Kat, their response includes the fact that they are a cancer survivor, or that someone they love has cancer or died from cancer… And not just strangers. People simply don’t talk about their journeys with cancer. I think there are many reasons for that.  For one, we can get tired of talking about the facts. Sometimes I want to talk about what I am learning in the experience, but there are few safe places to do that. I would like to be one who creates safe places to talk about the things that are truly important.

I am happy to report that the bathroom ceiling was completed sometime last summer.  Not such a big deal after all. A huge mess, but messes are nothing…

 


Click here to read about Kat’s journey on Caringbridge.

Marrow Sucking

I am sitting in the lobby at Duke Hospital writing this on my droid. Upstairs the best medical staff on the planet are pumping poison into my daughter to kill this awful cancer. I was planning to work remotely today, but forgot to bring my laptop power cord. So it has become a vacation day. Not really my choice for a vacation, but it is good to just stop all the activity for a while.

It was almost a year ago that I wrote this blog post describing the terror of our situation, http://jimazing.com/blog/2011/04/falling/. I am so thankful that I do not feel that way still. Today it feels surreal. As if this cannot possibly be happening to me and my family. It’s sort of like a dream. Surely I’ll wake up soon.

When I was a youngster, I wondered if I was living in a dream. I thought maybe I had fallen asleep when I was 7 years old and even though I was 10, I expected that I might wake up and really be only 7. Sometimes I still wonder if that 7 year old is going to wake up soon, rub his little eyes and say, “Man oh man! What a dream!”

Yet, here we are… Here I am. Sitting in a hospital lobby.

I don’t ask why. I know that many people do. It is just not a question on my mind. This Bible passage means a lot to me. Jesus said, ‘He causes his sun to rise on the evil and the good, and sends rain on the righteous and the unrighteous.” My personal translation of that verse is, “shit happens”. We do not get to choose everything that comes our way. Who among us would choose cancer!? And yet it happens… A lot! I don’t know why.   Although I would never have chosen this path… (ironically autocorrect changed path to pathology)… this is the path we have walked for the past year.

Because of this journey we have received such love and support that I feel completely overwhelmed. It was there all the time, but it took this horrible situation for it to be revealed. That is a blessing we experienced as a direct result of Kat’s illness.

I find myself asking if it was worth it. And immediately I recognize that question is closely akin to, “Why?” It is a question that does not need any of my attention. Of course I would never choose this course… I am not thankful for the cancer! I am thankful for family and friends in spite of the cancer. Does that make any sense at all?

Because of this journey, I am aware of the healthcare system in so much more intimate way. I don’t know if I shared this tidbit before, but just 3 or 4 weeks prior to getting sick, Kat was promoted to full time. Because of that, she has had excellent insurance. Her benefits ended with her job on March 1, 2012 (yesterday). That is an amazingly wonderful blessing on the one hand and also, I believe it is a tragedy of our healthcare system. Why is health insurance tied to our jobs? (rhetorical question) Is my life & health more valuable when I have work than when I do not? (I truly do not mean to open the can of worms that is our healthcare system.) My point is that because of what Kat is going through, I see some of these “issues” up close and personal… and that is a blessing.

There have been many times throughout this that I wondered if I would ever have another rational conversation with Kat. When she was in such pain that nothing else mattered to her, and we wondered if we would ever find out what was causing that pain. Now it is happening. She is beginning to talk about the journey so far and her dreams for the future. I find myself treasuring those times like the treasure they truly are. That is a blessing.

“I went to the woods because I wanted to live deliberately, I wanted to live deep and suck out all the marrow of life, To put to rout all that was not life and not when I had come to die Discover that I had not lived.”

–Henry David Thoreau

Like Thoreau, I believe there is life to be lived… deeply through good times and bad. Unlike Thoreau, I did not choose to go into the woods. My “woods” just happened. Somehow the the hard times have a way of waking me up. I am becoming more aware of the richness that is always there, but so easily missed.