April 1, 2012
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.
March 2, 2012
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, https://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.
July 2, 2011
Home
This song was on my mind today. Diana Ross sang it as Dorothy in The Wiz. I cried watching this video on Youtube. I imagine my friends watching the video and wondering if I have gone completely over the edge. I can only respond that I am particularly emotional these days. Having my family all together and with one of us in such a bad spot hit me hard, especially these lyrics:
If you’re list’ning god
Please don’t make it hard to know
If we should believe in the things that we see
Tell us, should we run away
Should we try and stay
Or would it be better just to let things be?Living here, in this brand new world
Might be a fantasy
But it taught me to love
So it’s real, real to me
This whole situation is teaching me to love. It is teaching me to receive love. I love you, Kat.
June 19, 2011
New Guy
On Sunday mornings, I meet with a group of friends at Amelies French Bakery. We talk about life together and encourage one another. Meeting at a public location can sometimes make things interesting, like this morning… a fellow came in and invited himself (politely) to be part of our group.
When he joined us, I was in the middle of telling them about how things were going with my daughter, Kat. I was aware that New Guy was unaware of what I was talking about, so I looked at him and explained briefly that we just learned she has cancer, just enough of the story so he would not be completely in the dark. I continued bringing my friends up to date. When I was done, the new guy asked if we had looked into “natural healing”. I gently said, “No, I am not interested.” He backed off and I thought that was the end.
When our little gathering ended, and I was leaving, New Guy approached and said, “I just wanted to tell you one thing…” which I abruptly interrupted and said curtly, “If you want to encourage me, I will welcome it, but I am not interested in listening to solutions right now.”
He was bewildered, “You don’t want to hear about something that could potentially help your daughter?”
I said, “No, I don’t want to hear it. I know you mean well, but I cannot listen to this.”
“Why not?”
Normally, I would have just pretended to listen to the guy, and then walked away, but after months of caring for Kat, I am tired. I have very little margin for worrying about the feelings of others. At this point in the conversation, I have asked him twice to back off and instead he’s pushing back and questioning my concern for my daughter!?!
I replied as calmly as I could, “You have got to walk in my shoes to understand that,” and turned to walk away.
New guy just wouldn’t stop. As I walked away, he was questioning why I would not consider every option available. How could I be so unloving as to…
I do know that he meant well, but I was so angry. How can this guy whom I have just met, who does not know me, does not know my situation, has never known Kat, has only just heard that she has cancer… How can he possibly have any valuable input into our situation? I wanted to tell him to come sit with Kat and me for a couple of hours while I massage her back in silence and then help us make the three day journey to Duke (which is only 2½ hours away). Sit with me and be my friend. Cry with me and listen to me vent… then decide if you really have anything to add.
I feel much better now. New guy helped me realize how much I value the friends who have walked through this with us. Who have laughed and cried with us and who will be with us to the end (and beyond). You know who you are. I love you.
If you want to follow Kat’s progress, please check out our site on Caringbridge.org
June 8, 2011
Another Day Older and Deeper in Debt
At one time not so very long ago in mining communities, the company owned everything and loaned the miners enough to just get by. But they never paid the workers enough to repay the debt. This way they kept the miners in something very close to slavery. As the song, “Sixteen Tons” said, “I owe my soul to the company store.” These miners never had a chance to break out of the cycle. As soon as they made a dollar, they had to pay it to the company, which forced them to borrow to meet their own needs and the cycle continued…
I have an awareness creeping in tonight that I am hopelessly in debt! Not to the company store, but in so many other ways. With our recent challenges, there are so many projects that have not been completed or even worked on, so many messages from friends and family who love me and my family asking how things are going. So many prayers and well wishes. So many who have leaned in to one degree or another. There is no way I could ever pay all of you back or even hope to catch up with all that I “should have” gotten done and what I’ll need to get done in the meantime…
Jesus once admonished a Pharisee that when he put on a party, he should not invite his rich friends, but instead invite people who could never repay him (Luke 14). I am the recipient of such generosity, but it is hard to accept such gifts no matter how freely they are given. That, of course, leaves me feeling that I am completely covered up… drowning in debt, so to speak. In a sense, we are actually covered up and drowning in gifts of grace, love, compassion, concern.
Thank you
April 10, 2011
Falling
Many years ago, When I took the kids to Myrtle Waves water park in Myrtle Beach there was one particular slide that I remember to this day. I’m not absolutely sure, but I think this photo is of that very slide. I remember starting my trip down. As you can see, the whole slide is inside a tube, so you can’t see what’s coming next. It was fun sloshing around and going faster and faster, and then all of a sudden, without warning it dropped straight down for a long ways! In addition to the startling change, I had a fear of heights and the sensation of free falling was terrifying! What made it even worse was that the water that had been moving me along under my butt was now free falling all around me. Time seemed to slow to a crawl. I didn’t feel like I could breathe because the air was thick with water vapor. Falling… unable to breathe… nothing to grab onto and no way to do anything but ride it out until the ride was done with me.
This week felt like a return to that water slide. My daughter was admitted to the hospital on April 1st and they took all week trying to find out what was wrong with her. On Saturday, they finally determined what was going on and broke the news to us. She has cancer. I found myself free falling, unable to breathe, nothing to grab onto to slow things down.
This is so hard to hear. It feels so surreal like everything has stopped. There’s a detachment from reality. It’s like I know there is another world out there, but I’m not part of it. For instance, we came home to Charlotte briefly Friday night and I was surprised to see that my lawn needed mowing. I thought, “Oh, grass continues to grow in this world.”
I want so much to tag this with a happy ending, but we aren’t to that part of the story yet. Right now, I am terrified and free falling with nothing to grab onto.
For those who would like to follow her story, we have setup a page on CaringBridge. Please visit http://www.caringbridge.org/visit/katanderson.
Update: Kat lost her battle with Primitive Neuroectodermal Tumor (PNET) on September 23, 2012. We miss her dearly. Her caringbridge site is still up including the detailed journal. You can read all of the other posts about my journey with Kat here: https://jimazing.com/blog/category/kat/
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