2015: A Year of Thankfulness

January 12th, 2016

Hello Family and Friends,

Happy end of 2015 and start of 2016! As our family sat around reflecting on a potential line for a yearly Christmas card, the phrase “Too much happened this year” seemed to be the only one that really did the year any justice.

I realize that I have been slightly neglectful in keeping you all up to date via this blog. But with the start of a new year, an update seemed in order. One caveat: neither this post nor these words will fully capture the experiences of the last few months.

On admittance day for my stem-cell transplant things got off to a rough start. Over the course of the previous weeks I had mentally prepared myself (as much a possible) to embark on this medical journey only to arrive to find that a bed wouldn’t be available for another nine hours. I was eventually admitted and began a seven-day period of chemotherapy. Initially the side effects were mild, though as I was correctly warned, the more severe side-effects were delayed. So other than the typical chemotherapy side effects, I was still able to eat, participate in group activities, and walk around the floor. It was very easy to lose track of time in the hospital; staff came in constantly to take my vital signs, change my sheets, draw my blood, etc. Most of this time was a blur. There were a few days when I received infusions for 8 hour periods both during the day and at night. Mostly all I wanted to do was sleep. I do remember one particular infusion session where the duration was short (only 30 minutes) but the process was intense. The entire time I had to chew on ice to numb my mouth and keep any inflammation to a minimum.

Day Zero itself – the day I was scheduled to receive my own stem cells – ended up being incredibly anti-climactic.

(Day Zero: That little red bag was my ticket to a new immune system)

Nothing can really mentally prepare you for months of wondering if a treatment will work…and then having the stem cells that are theoretically supposed to save your life simply dripped in over a 5 minute period. One amusing side-effect during the transplant was that due to a preservative, the stem-cells had a strong smell of canned corn that lingered for a few days. So I suppose now I will always associate the distinct odor of canned-corn with another shot at life.

It was at this point that things got surprisingly more difficult. As the doctors predicted, the side-effects got worse. My immune system essentially bottomed out as I waited for the new stem cells to engraft (find their home) and begin making all the different types of cells in the immune system. During this time it became difficult to swallow, making eating challenging. A variety of attempts to improve the condition didn’t really do much and it became more and more painful. At one point the doctors tried to give me some medication similar to morphine, but it really didn’t do anything except make me extremely dizzy. There was the occasional moment of irony as well. One the same day that I complained about being restricted to walking around the small hospital floor, the doctors decided that due to a low white blood cell count, I would have to be restricted further. For the next few days, I was constrained to just my room (resulting even tinier laps).

Of course, I’m not giving a full description of my time there. Throughout the 22 days I had a variety of friends and family visit to say hello. Leah and I watched a ton of football, I relearned backgammon with my dad, and I discussed theology with my mom. The staff at City of Hope were also great. A whole team of people were involved in my care, from doctors and medical fellows to occupational, physical, and recreational therapists. The nurses were particularly incredible, administering care and being wonderfully encouraging and supportive.

(Leah hanging out and keeping me company)

I was discharged right on schedule, 14 days after the transplant and 22 days after entering the hospital. I was ecstatic that I was well enough to get to go home, sleep in my own bed and not have to be woken up every 4 hours for vital signs. What I didn’t realize was that while the time in the hospital had been challenging physically, coming home was going to be much more difficult mentally and emotionally.

While in the hospital it was always clear what the mission was: having a specific chemo infusion, waiting until a certain white blood cell count came up high enough, etc. When I came home though that sense of mission simply slipped into the void, instead there was the ambiguous notion of “resting” and just waiting to feel better. There was the daily mental battle of “did the transplant actually work?” Yes, I had survived the procedure but had all the cancerous cells been eliminated by the high-dose chemotherapy and radioimmunotherapy? These are the questions that would run through my head daily.

There still are the questions I have and as I look forward to my planned start at Stanford in June there is the ever creeping sense of doubt and darkness. This post was meant for January 1st, but became delayed as I fretted about the potential results of an approaching bone marrow biopsy and PET-scan that will occur this week. But then I realized I wanted to share my doubt with you. I do acknowledge that there is an ever-present darkness, but in the midst of uncertain times I can choose to not lose sight of the story of great hope and healing. Seriously, the fact I’m doing this well at the moment is pretty miraculous. I have gotten to return to work on a part-time basis, my hair is growing back slowly, and most restrictions have been lifted. No matter the circumstance, no matter the year – 2015, 2016, or beyond – there will always be so much to be thankful for.

The light shines in the darkness, and the darkness has not overcome it.