This is a really long post. A lot has happened since my last post, and it has taken me a bit of processing time before being able to write. As you will see, there was quite a bit to process.
It has been awhile since my writing fingers have been ready to continue to log the experiences of our new journey. For a short time, I couldn’t put into words the details because my emotions were too strong. It was like in the beginning when I felt paralyzed… then exhausted… then drained.
Putting to written words both the good news and the bad news is hard. With the bad news, it feels a little like giving up huge pieces of hope and acknowledging defeat. As if writing about the reality makes it happen. A part of me didn’t want to write about bad news because I didn’t want to admit the conclusion the facts were pointing to as truth. I also didn’t want to bring anyone else into the sadness of the situation. I know that through this I’ve been honest in my posts, really honest, but I’ve left a lot out as well, trying to keep as positive a spin on each situation as possible.
Before I begin where I left off in my last post, I will share with you that we had good news at the end of December. As I take you through the chronology since Joe’s last hospital visit in November, I want you to keep in mind that as a Christmas present, we received news that the tumor size went down.
At the end of October Joe had finished his five treatments of IVIG infusions to treat the Guillain Barre syndrome. The treatments left him feeling more tired and weak than usual. Just a few days after the last IVIG, he began a round of oral chemo. With each passing day, his energy level became more and more depleted. By the end of the week, he wasn’t able to wake up long enough to sit up and take his pills. One of the pills was the steroid which was helping diminish the swelling in his brain. I know that it sounds crazy that someone could be too tired to sit up to take pills, but that’s how he was. Each day, Joe got a little worse. I called the doctor and after talking to the nurse decided that I didn’t need to take him in because he was still coherent. I was still concerned, however, because he was getting off of his pill schedule. When I came home on the fourth day after finishing chemo, the only thing he knew was that I was his wife, Gillian, but he couldn’t answer any other questions like “Do you know what year it is?” I was unable to get him to go to the car to go to the hospital, so again, I called 911. Lakeside Fire Department showed up first, then the paramedics.
Over the next several days, the staff at Kaiser worked to bring down the swelling in the brain through medication as well as looking for other possible contributing factors. I was frightened. The doctors couldn’t tell me that he would get better. I felt powerless and distraught. All I could do was hope and pray. All the doctors could do was medicate and wait. Slowly, Joe became more and more aware of where he was and why he was there. I began to breathe again and the flower of hope once again began to blossom.
I was thankful to be able to bring him home. Over the next couple of weeks, he was really weak. He never knew when his legs would just decide to stop working. I decided to look into moving to a downstairs apartment. Living upstairs felt like being trapped, not with bars and locks like in a jail, but like the deep moats they put in as barriers at the zoo. It looks like the animals could get out if they really want to, but they can’t in reality.
Joe had another MRI and an appointment with the neuro-oncologist towards the end of November. As the doctor pulled up the MRI pictures, I could tell by the look on her face that the news was not good. She pulled up images from the previous month and there had been a significant change for the worse. The tumor had both grown and become a lot more reactive with the MRI die, both factors indicating the presence of the most aggressive cells, glioblastoma multiforme. NOT GOOD!
Desperately, I fought to keep a brave face. I couldn’t let Joe see the weakness inside. I wanted to give him strength to process the information. Not fully understanding the news nor wanting to connect the dots himself, Joe pushed the doctor for concrete answers. “How much time do I have?” The doctor was hesitant to answer but finally said that as an average (young- old, healthy- not healthy) time is 13 months. With those words, my heart stopped and I couldn’t breathe. “No! That can’t be right!” I screamed inside my head. I wondered if 13 months was from the moment I was sitting in the chair hearing this awful news or from time of diagnosis. I didn’t want to ask. Either of the answers would send me over the edge, and I had to keep it together at least for several more moments. All I could do was breathe deeply and try to will the tears to stay at bay behind the eyes until it was safe to let them out. I didn’t hear much more during the appointment, but understood that we needed to change the treatment plan. The new plan would be to go into the infusion center and receive chemo every 14 days.
This was the bad news that was so hard for me to communicate.
The new treatment started the very next day. Everyone in the infusion center was like a golden light of Hope. From the patients and family members to the nurses and the rest of the staff, we found so many new bits of Hope to call our own. Both Joe and I were trying to be strong for the other, but we were on our reserve tanks and almost completely drained. Those we encountered at the infusion center helped us begin to fill the tanks back up.
Hearing a timeline in months took both Joe and me to a whole new perspective, a whole new leg of our journey. I found myself once again in unfamiliar territory.
If I were ever told that I only had a limited amount of chocolate that I could eat for the rest of my life, I would certainly savor each and every decadent molecule entering my mouth. I would also be careful about when and where I would eat the delicious morsel. I wouldn’t want to waste the experience of it by quickly popping it into my mouth and swallowing it in one gulp, or shoving as many as I could down my gullet as I drove from point A to point B. No. I would stop and turn my focus on the opportunity each time I found myself gifted with a piece and slowly savor each bite, swallowing only when I had to. I would also know that I wouldn’t have an opportunity to experience THAT particular piece of chocolate again, and if I memorized the event well enough, I could relive that event in my memory as many times as I wanted. That’s how I started to think of my time with Joe. My prayer to God was (and is) that Joe and I would be able to have good moments together. Since June, the nasty creature, Depression, was making that very difficult.
Soon I began to see my prayers being answered. The ugly creature, Depression, began to shrink, and I had my Joe back, first in moments, then hours, then days. As days passed, time with him began to taste sweeter and sweeter. I began to fill my “Thankful Cup” with well savored moments. As a result other cups such as “Strength” and “Hope” also began to fill. As Joe’s physical strength increased, we were able to go out to breakfast together, then Christmas shopping. Holiday meals with family and friends were quite enjoyable as well. We made the move to a downstairs apartment with the help of amazing friends and the “Incredible Cow Crew.” Being on the ground floor seemed liberating. Joe’s physical strength increased every day. Soon it came time for another MRI and talk with the doctor.
Just after Christmas we met. The doctor explained that the images hadn’t been read yet, so she’d be looking at them for the first time with us. I held my breath. I was thankful that Joe had been feeling so much better, but anxious to see if the images reflected the outward appearance. As she pulled up the images, I watched the doctor’s face, knowing that I would learn a lot more from her face than from looking at the images myself. I saw possible confusion on her face. I wasn’t sure of the emotion, but it didn’t seem like dread as it had the month before. She pulled up November’s images to compare. They looked quite different to me, but I didn’t know what that meant. After what seemed like hours, she finally spoke. “This looks much better,” she said. Then she proceeded to explain what she was seeing. As Joe and I listened carefully, I began to wonder if I was comprehending correctly. Eventually the words, “remarkable change,” found their way to my ears from this very conservative doctor, I believed the news was good, not just good but “remarkable.” The change in the tumor was certainly consistent with the way that he’d been feeling. The biggest news for me was that the presence of aggressive cells seemed almost gone according to the images. Those were the really bright patches in November’s images of the tumor. Now the tumor was mostly a dull grey, still there, but less scary. Merry Christmas to us!
Joe and I left the office with our “Hope” cups much more full. I don’t remember much of the rest of the appointment, except that we were going to continue with the treatment and do another scan in February.
This news was obviously quite different from November’s news, but I didn’t have the courage to put it in writing. I feared (and still do) that the good news was temporary, and that by putting it in writing I might be painting a big target for another disastrous blow. I wanted in some way to keep things a little under the radar.
It is so easy to look at Joe’s situation and scream to the heavens about the unfairness of it all. In our lives, many of us learn from an early age the importance of controlling as many aspects of our lives as possible in order to affect the best possible outcome. I work with kids all the time helping them identify opportunities for choice and predict the possible consequences both good and bad. As long as we are in control of a certain number of things, our lives (in this country) can pretty much be what we wish to make of them. (At least that’s how I choose to see things.) When things happen beyond our choices where we have no control, it’s really hard to let go of the idea of being able to control one’s own destiny. At the same time, it’s really hard to believe that there exists a power greater than human comprehension who has your best interest in mind. Both easily can leave you with feeling that not only do you have no power over the situation, but IF there even exists a higher power, pleading for a change in the situation would be fruitless. If every day is a bit worse than the day before (sprinkled in with some days MUCH worse than you thought possible), AND the number of days are limited, (with the count becoming exponentially smaller), it is really hard to find hope. One choice is acceptance of the situation without hope, and that is a really sad, dark place to be. This place I call, “Truly Hopeless.”
However, incredible blessings can be born from such a dark place.
While up at Camp Cuyamaca for 6th grade camp, I noticed dark, burnt trees piercing through the greenery covering the surrounding mountains and was reminded of the vast devastation left in the wake of the Cedar Fire several years ago. Soon after the fire, Joe and I took a drive through the mountains. No visible evidence of life was left. Blackness covered the landscape most everywhere the eye could see. It was like driving through some alien planet that could no longer sustain life. I asked one of the counselors about the impact the fires had on the camp property. One of the things he described was the blooming of the most amazing wild flowers he had ever seen during the spring after the fires. Those fires had changed the landscape dramatically, taking away so much life, stripping the beauty we were all used to, leaving the land seemingly devastated. It was only because of that devastation, however, that the land was also given what was necessary to produce beautiful flowers. I can only imagine the beauty of the flowers contrasting the barren land, making them even more stunning.
Each day since that positive December meeting I’ve been able to recognize as a true blessing. November’s news seemed to be the necessary blow stripping away Hope, leaving us feeling powerless, drained, and devastated. We had no choice but to give up Hope of controlling the situation in any way. We had to let go. In letting go of the Hope of influencing the situation, I found myself clinging more desperately to Faith. Then I saw it happen. One little change for the better as the Joe I know began to come back to me. Just as I noticed the incremental changes last June that alerted the doctor to order the first CT scan, I noticed the incremental changes as the Joe I know came back. With each small change came an enormous level of Thankfulness, and my grip on Faith grew stronger. Soon my cup of Hope was filling once again. It didn’t take long for the incremental changes to become drastic changes bringing more Thankfulness, Faith, and Hope. Having “control” over the situation was no longer the center of my perspective, and with that I was given an incredible gift of sight, the sight of Thankfulness. It took stripping away our landscape to dark devastation for the small seeds of Thankfulness, planted long ago, to get the nutrients needed to grow first into small buds, then into full, blossoming flowers.
It is an incredible blessing to be able to cherish each day. Right now I accept that anything could happen. And I accept that much of what will happen is beyond my control. What I can do is identify each positive moment like one of those limited morsels of chocolate and savor it. Being able to identify, memorize, and savor special moments is a gift for which I am very Thankful. J
Thank you again for all of your prayers!