April 1, 2012

Wish I Didn’t Know That

Posted in family, Kat, personal at 4:37 pm by jimazing

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.

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