Grateful

Since my first post about my Dad, and the Facebook and Twitter updates that have followed, I’ve had so many people ask me whether or not he was able to make it out to visit with us in Indiana over the Thanksgiving holiday. I’m happy to report that, yes, he did. And I honestly didn’t think it was going to be possible – with our schedules, his health, his treatment regiment, the weather, the holiday traffic, the ten hour road trip, and the countless other factors that could have conspired to work against us. The picture below sums up just why it was so important for me to get my father out of the house and away for a little weekend retreat.

My Dad loves coming to our place in Indiana, and he wasn’t able to do it nearly as much as he had wanted to and planned to this past year. Over the Thanksgiving holiday, Aiden and Connor enjoyed some rare quiet and “alone” time together with their Papa, just sitting by the picture window and enjoying one another’s company. I also really wanted my dad to know that his life was not bound by the four walls of his bedroom and trips to the hospital. He really perked up when he was out, and surprised even himself with how good he felt to be on a roadtrip. Five hours in the car and a detour to his old stomping grounds, and he did remarkably well.

On our way out of Chicago, it was nice to be able to bring him to the Cook County Clerk of Circuit Court in Skokie, where he has worked for many years as a Korean language court interpreter. He’s traveled all over the country in this role, and given his language skills and legal proficiencies, his talents are sought far and wide as a court interpreter. It was when I learned that he had turned down a job to help with a business transaction in Vietnam that the severity of his condition first hit me. The ability to work and to maintain active is immensely important to him and he truly defines himself by his career. Although he’s worked in many courthouses, Skokie is a location that he’s spent a good deal of time so it was a real treat for me to be able to bring him in to see some friends that he had not seen since he was diagnosed with cancer two months ago. Everyone was so surprised and happy to see him, though completely taken aback by the condition he was in after seeing him just little over a month earlier and he had been completely fine. As he proudly pushed his walker through the security checkpoint it was clear that he had many friends there. From the security guards, clerks, attorneys and judges, everyone knew him and made an effort to come over to talk to him. We sat down in the first row of the court room, reserved for attorneys and their clients, as one of his client’s cases was before the judge. Even as we sat there, several people came into the courtroom to say hello and to share stories with me about how he had helped various people, primarily through his immigration work. I held his hand and was overwhelmed by the emotion of seeing him, in his frail state, report to work and be greeted by his colleagues.

After an hour in the court house, it took quite some time and effort for us to get out and to our car. And in that time more people had learned that my had dad finally  come to pay a visit after his sudden and unexpected departure. As we were getting into the car, the Sargeant and his Chief ran out after us so that they could visit with my Dad. It was evident that he has earned the respect and friendship of many people at his place of work, and I was incredibly proud of him as he thanked me for taking him to the court house and we drove away.

Once we arrived in Indiana, we pretty much parked him in front of the big picture window and let him enjoy the quiet calm of the surroundings. It was a truly peaceful weekend and he was never alone for a moment as we positioned his chair in the main family room area. We took turns sitting vigil by his side throughout the night and as I watched him silhouetted against the outside Christmas lights, I wished the morning would never come.

The boys are still trying to understand the change in their Papa, and they’re not quite sure why he’s not up and about as they are accustomed to. But they did a good job playing quietly by his side and trying to entertain him with their games, stories and performances.

My Dad did a lot of sleeping when he was with us, but the boys simply curled up next to him and took it all in stride.

Keeping up with his medication schedule is a job in and of itself. The first time I visited him after his diagnosis, I made contact with all of his doctors in an effort to better understand his condition, medications, prognosis and treatment regiment. I put together this schedule of medications to help keep everything on track and properly dosed, and this sheet is for a single day of medications. While the doctors do their best to care for my father and all of their patients, he’s seeing a more than a handful of different doctors and I’m acutely aware of the importance of having a family member take on the role of patient advocate. Its been a real challenge from afar, but its a job I take seriously.

The stairs leading up to our driveway never looked as daunting as they did the morning of our departure. In the five days he was with us, his health had taken a turn for the worse and Chris and I sat up the night before, strategizing our trip up the stairs. This time of year the lake is pretty much deserted, so finding a neighbor to give us a hand wasn’t a real option. It was Chris and I, a five- and nine-year old, my Dad’s weak legs, and all the implements we could muster from our house. I’d be lying if I didn’t say we had a back-up plan of calling the Fire Department to have him carried up to the car in a stretcher.

Thankfully the frigid weather lifted that morning so our journey up the stairs was manageable. Chris took all the chairs from the house and lined them up along the steps. We walked as far as my Dad could manage, then stopped for a break along the way. Before our ascent, we sat the kids down and explained our challenge and they were each assigned a job. While Chris and I physically helped my Dad up by lifting him under the arms from either side, Aiden carried the walker to help him sit down and stand back up again. Connor carried the blanket to keep him warm during his rest stops and was responsible for moving chairs from the lower steps to the upper steps as we passed the various “checkpoints”. Not simply resting, my Dad also took the opportunity to look back at the lake and enjoy the surroundings he loves so well.

Chris has been so incredibly supportive since we learned of my Dad’s illness, doing everything he can to help us spend us much time as possible with my Dad whether it be in Chicago or Indiana. He’s driven countless miles in the wee hours of the morning, transporting our family safely back home. He cheerfully drove an hour and back to Indianapolis to find kimchee for my Dad, even though we both knew he wasn’t going to be able to eat it. Rearranged his work schedule to be home for the kids when I needed to stay in Chicago to meet with my Dad’s doctors. Researched online and purchased books on cancer, hope, and helping children cope with the death of a loved one. Bravely told me when it was time to move on, get some rest, face reality or keep my head up when I couldn’t think clearly for myself. I don’t know what I would have done without him these past two months.

A rest stop further up the hill, Connor is always ready with a smile and a hug.

Time out with Aiden.

One last view of Sweetwater Lake.  Never one to expose a weakness or share a burden, 45 minutes into our journey up the stairs, my Dad simply said that the fresh, crisp, lake air made him feel good.

I only wish there really were some magic in that air, something to breathe life back into him. With each passing week, I see him visibly deteriorating. On his visit, I sat up with him the first evening as Chris and the boys made a grocery store run. They were gone just a few hours but it felt like an eternity as I watched in disbelief, my Dad start to talk to people that weren’t there. As it got progressively worse, I grabbed a notepad and began to jot down the play-by-play so that I could recount it for his doctors. At some point, I remembered the words of his oncologist that still haunt me, “We need to keep an eye out for any sign that the cancer has spread to his brain”. My writing became frantic as I wrote down the words, “I fear it has spread”. I spoke with his doctor the next morning, and the day after, and on Thanksgiving day, and the day after that. I learned that this type of response is not uncommon given the medley of medications that had steadily and cumatively built up in his body. I slowly decreased his medications one by one, including his pain medications. His head began to clear a bit and the doctors assured me that brain matastesis would not typically present in this way and that a non-organic cause was likely the culprit. That next morning, I wrote, “I had the biggest scare of my life. My Dad’s been with me for 24 hours and he’s hallucinating. But I just spoke with the doctor and he believes its just a bad reaction to a new medication”. I desperately wanted that to be true. I continued to withhold his meds until, after 36 hours, my Dad awoke and said, “I think my cancer is getting worse because my whole body hurts”. My heart sank. The man who never complains about anything was telling me that he was in pain. In pain, because I had withheld his pain medications. Of course, he didn’t tell me as he was starting to feel bad, but only after it was so bad that his whole body ached and it led him to believe he could actually feel his cancer spreading. I quickly restarted him on his morphine and vowed to find another way to determine the cause of his hallucinations. I drove him back to Chicago and promised myself that I would not leave until I found a way to know for sure.

At midnight, I sat in the hospital waiting room for the results of an emergency CAT Scan which I begged the doctors for. The results weren’t definitive, but there was bleeding on the brain which led the doctor to order an MRI for a deeper look into his brain tissues. But he needed to get home. He was falling asleep in his wheelchair and his body was aching. He had sat through hours of chemo in the morning, only for me to surprise him with a detour to the hospital on what he thought was the drive home. We waited for a decision to order the test, then waited for it to be scheduled. Then we waited for the test. Then we waited for the results. Then we waited for the after-hours call from his doctors.

By now, I had already been gone more than a week and my family was already two states away, at home without me. The kids needed to be picked up from school. The dogs needed to come home. I had overdue client business to attend to. I had brought my Dad to Indiana for the holiday, giving him a chance to leave his house and enjoy the life that he once knew and that we all took for granted just a few months ago. We stopped at the courthouse on our way out of town, and I took him to see his dear brother in a nursing home on our way back in. I had recognized the signs of his changing condition and had alerted his doctors, demanded the tests, taken him to the hospital. At that point, I felt that there was nothing else I could do. The final test was scheduled and it would be another day before we got any results. So I drove home, got stuck in traffic, followed a detour that added another hour to my trip. I spoke with my brother in Seattle to keep me awake at 2 in the morning. At about 4am I veered off the highway and decided to spend the night back at our place in Indiana. It was cold and lonely, and I wished I could turn back the clock to three days prior. The next morning I awoke just in time to call the hospital and prep all his paperwork to minimize my Dad’s wait time before the test. Then I got in the car again and drove the last two hours home. As I walked into the house and closed the door, the phone rang. I hadn’t even taken off my shoes but I ran to the phone when I heard the caller I.D. It was a call his oncologist. And they had called to say that they were deeply sorry to have to tell me that the cancer had, in fact, spread to his brain. Twelve hours earlier I thought that there was nothing else that I could do. But as I received this news, and knew that my Dad would also soon be hearing these words, I wished that I had stayed to hold his hand as he sat in his doctor’s office to get his test results.

Reflecting on all that has transpired, of course I am devastated by my Dad’s condition. And the fact that it has all happened so suddenly and without any warning. But I am grateful that we have had some time to prepare and to say our goodbyes. I’m grateful that I have time to think about how best to talk to my kids about what I know we will be facing sooner than I had ever imagined. I’m grateful that my brother, who lives too far away at a time like this, has been able to find a way to get home and see his father before it is too late. I’m grateful that my Dad is having an opportunity to visit with friends and family, and that, through those visits, he is seeing just how much people love him and how many people care. As he has visitor after visitor stop by to pay their respects, he is reminded of what a truly meaningful life he has led. And I’m grateful for my friends, family and clients who have been more supportive than I ever could have imagined and shared words of wisdom that are helping me get through the days.

As I sat by my father’s bedside this past weekend, I remembered the words of my client and friend Tracey, who this past year has endured her own unthinkable, personal tragedy from which she’s learned and grown. This is what she shared with me, and what I read again before stepping foot in his house,

“Take it one day at a time.  Don’t think about the weeks or months ahead.  Focus on the here and now. Put the emotions of loss in an imaginary box and bask in the moments you have with him. Enjoy every single moment.  Allow yourself to grieve, cry, and be weak. Being human is a sign of strength in it’s own right. Crying is your soul’s way of cleansing. It’s okay to fall apart and it’s okay to be sad. You will be a lot healthier by allowing yourself to grieve. Right now, educate yourself about the grief process. It’s important for you to know that it is a process and it’s important to understand that everyone deals with grief in their own way. You have earned the right to scream, cry, break things, curl up in bed for a little while, hide, laugh, reminisce and love your father. You have earned the right to handle how you feel in your own way on your own time line and at your own pace. When he moves on from this world, know that you will always carry part of him with you”.

To say that the words, support and comfort of family and friends is sustaining me at this time would be an understatement. I am truly humbled and grateful to have some many generous, caring and thoughtful people in my life. And as my friend also reminded me, I am truly grateful to be able to speak these words, “I am my father’s daughter”.

My Dad’s battle continues. For an update on his condition, click here.