Who Am I When my Body Fails Me? is a question we all need to ask ourselves when injury or illness takes its toll on our lives. How are we different? How are we the same? How do we respond to mental, physical, and/or spiritual stresses? How do we view God when we are weak or in pain? Below is the most recent of several blogs on this question. Click on Who am I When My Body Fails Me in the Category List to find the rest.
GOOD NEWS AND NOT SO GOOD NEWS
Yesterday passed like all recent Thursdays: weight, blood pressure, temperature, oxygen, blood draw, chemotherapy injection. But this day had one high point. It had been 16 weeks since my diagnosis of myeloma, a blood cancer, and it was time to hear about next steps from the hematologist. Treatment had been going well, and he had said earlier that perhaps the drug regimen could be eased somewhat. I was really hoping that would be the case.
The good news was that the bad protein which is the cancer could not be detected in my blood. The not so good news was that because I was doing well on this therapy, the maintenance dose would remain the same for another eight months: 13 chemo pills, 10 steroid pills, one anti-nausea pill every Thursday followed by a chemo injection. This is not remission; this is maintenance.
Other not so good news is that I cannot stay on these chemo medications after November; each causes a different harmful side effect. There is no guarantee that whichever drug he chooses next will be as effective. When the drugs stop working, the cancer will take its course. The reality of incurable cancer hits home again.
One other piece of good news that morning was that two books I had eagerly put on hold at the library were finally available, so I checked them out. Since I had to chauffeur my husband around during the afternoon, I started reading one of them as I waited in the car.
When I got home, I remembered that it was Thursday. Thursday night is a night I don’t sleep at all – the steroids are still popping. In fact, most nights see only a three or four hours of sleep until Wednesday night, and the next day the whole cycle starts over. But now, I realized, I could use these sleepless hours to good advantage!
I watched American Idol and then I set aside the 754 page book I had been reading during the week (Sam Phillips, The Man Who Invented Rock ‘N’ Roll, a great book if you love early rock and roll) and picked up the book I had been reading in the car: On My Own by Diane Rehm, the host of my favorite show on NPR. Diane Rehm’s husband John died after a long battle with Parkinson’s Disease. The story of how he began slipping away from her from the day of that diagnosis until the day of his death in June, 2015 and how she adapted to life as a caregiver and widow is breathtaking.
I finished that book in tears at about 1:00 a.m. and started When Breath Becomes Air by Paul Kalanithi, a rising neurosurgeon and neuroscientist who was diagnosed with lung cancer at the age of 36 and died just a few years later in March, 2015. At 4:30 a.m. I closed that one also in tears and realized what a gift I had been given by both authors. (Look for more information soon on both in the Book Recommendations page on the home page of this blog).
I have learned so much from these two deep thinkers who write beautifully about their deepest joy and pain. I am sure many more posts will be influenced by their journeys. For now I will close with quotes from each of the books that turned my good news, not so good news day into a blessing. First from Diane Rehm:
“When John and I first walked into this apartment, gauging whether it might be right for us the first words he said, “Diane look at the light!” And indeed, the apartment was totally free from shadow, wide windows opening onto parkland fourteen stories below, sunshine pouring into every room.
I found myself thinking about those first moments in the apartment when, last night, I began wondering whether John had “seen the light” as he lay dying. And, alternatively, whether John is telling me, from wherever he is, to “look at the light.” To look ahead, to plan, to investigate with excitement what possibilities lie ahead. . . . Now, in this new place in which I find myself I hope I, too, can see the light ahead, that I am open to new avenues, new views of life, knowing that what is past lies only in my heart, and that possibilities of the future, if I allow them to enter, await me.”
And now from Paul Kalanithi:
“Time for me is now double-edged: every day brings me further from the low of my last relapse but closer to the next recurrence – and eventually, death. Perhaps later than I think, but certainly sooner than I desire. There are, I imagine two responses to that realization. The most obvious might be an impulse to frantic activity: to “live life to its fullest,” to travel to dine, to achieve a host of neglected ambitions. Part of the cruelty of cancer, though, is not only that it limits your time; it also limits your energy, vastly reducing the amount you can squeeze into a day. It is a tired hare who now races. And even if I had the energy, I prefer a more tortoiselike approach. I plod. I ponder. Some days I simply persist.
If time dilates when one moves at high speeds, does it contract when one barely moves at all? It must: the days have shortened considerably.
With little to distinguish one day from the next, time has begun to feel static. In English, we use the word time in different ways: “The time is now 2:45” versus “I’m going through a tough time.” These days, time feels less like the ticking clock and more like a state of being. Languor settles in. There’s a feeling of openness . . . . Now the time of day means nothing, the day of the week scarcely more.”
Whether it is looking ahead to the light of new possibilities or becoming more adjusted to the shortening of days, I will always be grateful to these brave writers for helping me see the good news in the midst of the not so good news.