Tag: lymphoma

Our Numbered Days

Dylan will finish his second round of chemo today at noon. We could be sent home in the late afternoon. We still have two rounds left, but if the last two rounds go this well we could be done with the chemo long before we thought. What happens after chemo? A month-long wait and then a CT body scan seeing if all the cancer is gone. I don’t want to think ahead to that time because the anxiety of the future isn’t worth the mental energy.

Yesterday, Shantel brought in Dylan’s latest blood work numbers. His counts are already out of the danger zone (below 1,000). Last round we were dealing with numbers like zero, 30, and 180; his total count is over 3,000. As Shantel said, “Your body is telling cancer to stay out.”

That doesn’t mean things have been all wine and roses here in room 1263, Dylan’s appetite is not great. The nausea has him down to eating in short spurts of opportunity. He has had it with the cafeteria food and so I have headed out to get him food from nearby restaurants, which isn’t a hardship because the weather here has been unbelievable, sorry East Coast, but Seattle was 63 degrees and sunny yesterday. So when Dylan said, “I want a chocolate Top Pot donut. A couple sausage patties and hash-browns,” I was happy to hit the streets in search of breakfast. As I was walking to Top Pot I noticed a homeless lady coming out of the bushes near a church. She started dragging her blue tarp and sleeping bag down the sidewalk blocking most of the path so I stepped aside to let her pass.  When she was next to me, she looked up at me and asked, “Are you a Wookie?” Okay, I get it. Tall, out of control beard= Wookie. The worst part of being mistaken for a Wookie was that I didn’t have a good response for this poor lady. All I did was give her a cheerful, “Nope.”

My mission to find Dylan exactly what he wanted was hampered by the fact that nothing opens on Sunday morning around here until 11 AM. So, I ended up gathering a couple donuts and a smattering of breakfast sandwiches from Starbucks and bringing them back to the room for him to sort through. He ate a bit of this and a bit of that and then laid back like a drunk trying to avoid the bed spins.

A bit later, around 9:30, he sat up and we took a walk to look at the Columbia Tower. Each year, firefighters from around the Northwest climb the tallest building west of the Mississippi to raise money for Leukemia and Lymphoma research and yesterday was the day the event was taking place. Some of the firemen dedicate their climbs to family members and friends as a way to inspire them to reach the top. Jared Romberg, a fireman we know from Sequim, was dedicating his climb to a family member and Dylan. (Donations are still being accepted: Columbia Tower Climb.

Columbia Tower is the tall black one.

Columbia Tower is the tall black one.

Dylan and I looked out through the large window in the family room at Swedish toward the Columbia Tower. In some ways it was a surreal experience, the tower looked the same as it always did, but today the stairways were filled with firemen climbing to the top to raise money for the very cancer that my son has.

When we got back to the room Dylan took a nap and when he woke up he seemed a bit bummed. “Does this feel real?” he asked. The funny thing is I knew what he meant. So much of our identity is wrapped up in our activity and when you are in a hospital the activities are things like getting blood drawn and talking about the color of your urine…the experience of hospital life has a way of disconnecting you from the world and soon you realize that while your life has stalled, everyone else’s continues to go on. I told Dylan that I didn’t know what it was like to have cancer, but I did know what it was like to lose your identity. Anyone who has played a team sport and had a serious injury knows what it is like. One day you are part of a team and the next day you are not, you are in some athletic limbo place where you exist outside the team. On 2/1/2015, my son was a Peer Support Counselor and full-time college student; two days later he was a cancer patient. I am certain that his identity as a cancer survivor will be a deep source of strength in the future, but for now he is sidelined from life and frustrated. This is a good thing, it means that he is beginning to think about the future.

I have also begun to think about the future. I have avoided looking on the internet for information about Dylan’s specific type of cancer. (If you recall, early in Dylan’s diagnosis liver cancer was a possibility and the survival rates are under 10%, so I have been reluctant to return to the internet for information.) Yesterday, while Dylan was taking one of his power naps, I went to the American Cancer Society webpage and looked around. There is lots of good news about cancer research and survival. Between 1975 and 2010 death rates for cancer victims have declined by 50%. Dylan’s specific cancer has a 50% survival rate. His age and overall health have been a great help in this fight so far, but we are not out of the cancer woods yet.

Maybe it is because I turned 50 yesterday, but I have been thinking a lot about my numbered days. So far I have been alive for 18,251 days. I don’t know how many days I have left, but I’m not going to spend too much time worrying about it. I have traveled, loved, cried, and shared life with wonderful people. These last 40 days have been some of the most intense of my life and I am going to agree with Jim Valvano on this one, a full day is one where you have the chance to laugh, cry and think, so most of these 40 days have been filled to overflowing. I don’t think we get a second chance at life, it’s a one shot deal, but if I did get a second round I guess it wouldn’t be so bad to come back as a Wookie.

Into the Unknown

Day two arrived, or was it day three? Hospitals are places where the normal rules of twenty-four hours cannot apply. The waiting hours are multiplied and the days can drift away without any feeling of accomplishment.

Each doctor arrived, handed over their business cards, and talked about what it might be. The first action was a visit to the ultrasound room for a sonogram and a perisomethingorother. The room was near the bottom of the hospital and it felt good to get out of the room and see that life was continuing without us. The strangeness of the ultrasound room was summed up in all of the posters on the wall: a collection of black and white images of babies floating amniotic fluid. This was a room set aside for the happiest moment of parenthood, not for looking into the belly of my son to find the best place to drain infected fluid from his belly.

The Tech came in and began the very familiar process of spreading the clear conducting agent on the head of the ultrasound sensor and then pushing it across my son’s belly. My wife and I stood looking at the monitor not really knowing what we were seeing and knowing better than to ask any questions like, “Does the liver look healthy?” We knew the main reason for this trip was to look at the liver and to gather fluid to test. I made the mistake of Googling the terms Liver Cancer as we waited in the hospital room after one of the doctors mentioned it as a possibility. The internet is a cruel place. Rates of survival for liver cancer are not high.

After twenty minutes, the Tech called in a doctor who introduced herself and proceeded to find the best location to lance my son’s swollen belly. She found the spot, marked it with an X like buried treasure, numbed the area with a couple stinging shots of pain-killer, and then took out the needle and catheter. (The needle sat inside the plastic catheter like the retractable part of ballpoint pen sits inside of the pen shell.) She lanced his side, withdrew the needle, connected a narrow tube to the catheter, collected several large syringes of a beer colored fluid and then began draining fluid into pressurized airtight liter bottles. Three and a half liters of fluid washed out of his stomach and into the glass bottles.

When the doctor was done, she sealed the puncture off with a bandaid and said the samples would be sent to the lab. I asked, “How long until we know anything?” Direct questions like this do not get direct answers, hours for some tests, days for some tests, no way to really tell. We made our way back up to the room and had our first positive surprise of this journey, one of Dylan’s best friends had driven to Seattle from Spokane (270 miles). Dylan was feeling much better after losing the extra liters of fluid and having his friend in the room lifted everyone’s spirits.

The rest of the day was spent teasing Dylan and trying to forget we were all in this room because we did not know what was going to happen. The unknown carries, pound for pound, more fear than anything else. The evening came without any answers, Dylan’s friend went to a hotel, and we slept as well as you can in a hospital when thoughts of death are floating around. The morning arrived and we waited. Dylan’s friend arrived, my wife and I ate some breakfast in the cafeteria and when we got back to the room one of the Oncology doctors laid out the rest of the day for us: blood tests, bone marrow draw, and a sonogram of his nether regions. We decided that Dylan’s friend should attend the sonogram and that I should run home and get supplies for the long haul.

Living two hours from Seattle was going to provide some unique challenges but with the diagnosis still unknown I drove home to pick up clothing for the next few days. It was easy to distract myself by listening to sports radio, the entire region had been wrapped up in the Seahawks’ Superbowl run and after the improbable loss the airwaves were full of anguish and second-guessing. People called into the AM stations to talk about how hard it was to get out of bed and how depressed they were. There are times when the cosmic ironies of the world are drawn into sharp contrast and this was one of those times for me. Sports have always been important to me, but I have never cried at a loss, I have never felt a deep connection to a team that would lead me to get depressed after a loss, and when your son is in the hospital the psychic pain people feel because Pete Carroll didn’t run the ball from the one-yard line is absurd.

I arrived at home, packed fresh clothing, showered, and waited for my daughter to get home from school. My mom had filled in at home for us and we talked for a little bit about what was going on. My mom is a retired nurse and has always been a great resource for medical advice, but I did my best to steer the conversation away from the darkest possibilities.

When my daughter got home, I spent time with her to see how she was doing, she was bothered by all the attention at school and just wanted to get through things as normally as possible. I left and drove back to Seattle.

The evening brought the first piece of solid information, there were cancer cells in the stomach fluid but the liver was functioning and there were no tumors there. Dylan took a deep breath and asked, “So, I have cancer?”

“Yes.”

I don’t know how it feels to be 20 and have a doctor tell you that you have cancer, but I do know how it feels when your healthy son goes from having stomach pain to being diagnosed with cancer in the matter of a few days, it’s scary. We all had a good cry and I felt an incredible relief, it wasn’t liver cancer. Soon after the news the lead Hematological Oncologist arrived to give more detail. There were terrifying possibilities, “the cancer could be in the spinal fluid” but the words I chose to remember were these: “This is a highly aggressive cancer, which is good because highly aggressive cancers are easier to treat and CURE.” We asked lots of questions and the answers were all very reassuring. More tests would be done, a port would be put in Dylan’s chest so he could begin Chemotherapy, and they thought they knew exactly what type of Non-Hodgkins lymphoma it was.

When Dylan was asked if he had any questions, he paused, thought for a moment and then asked, “Will I have superpowers after Chemotherapy?”

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