Has it really only been 5 weeks? It was January 27th when Leaves and I walked into the xray center at Virginia Hospital Center for what we thought was going to be a relatively routine MRI of her back prior to a referral to a pain management specialist only to find out - eventually - that she had a blood cancer which had compromised her spine.
Yes, her life in particular, but my life as well, our life together, now changed.
So where are we after five weeks?
Today and tomorrow Leaves on the Current will take the pills that will represent the end of her first two weeks on chemotherapy: two weeks of injections Tuesday and Friday, 14 days of a powerful pill, then one week off. Every four weeks she will receive an infusion of a substance to help restore her spine. On the days of the injection and the day after she has to take a large dose of a steroid, but otherwise has now been weaned off steroids on other days. While we monitor her blood sugar, it seems only the days with the massive amounts of steroids require her to take insulin.
On Monday she will receive the last of the 10 doses of radiation for this her second round.
Since I last updated at the beginning of last week, we have seen some important signs. And we are gaining a deeper understanding of things that matter.
As some may know, after degrees at Harvard and Oxford, the latter on a Marshall Fellowship, Leaves returned to academia to get a doctorate in American Studies at George Washington University, largely because of a very charismatic and brilliant scholar and teacher there, John Vlach. John retired recently, and the department and the university wanted to honor him. My beloved was requested to give one of the prepared sets of remarks, in part because the dissertation he supervised had won the Henry Gabriel Prize for the best dissertation in American Studies. For a while we were unsure whether her health would allow her to do it, although they kept her on the schedule and I strongly urged her to consider it. That event was on Thursday evening,
People were delighted to see her. As her proud spouse I want to say her remarks were fantastic, the best given. It reconnected her in part with her intellectual life.
That was the first of three consecutive days with events out of the house. The day before she returned to her office for the first time in several weeks, coming for a staff meeting and staying to make some arrangements and meet with several people.
Friday we drove to Bethesda to be guests for lunch with her college roommate and that lovely's significant other, both physicians. It was a delightful almost two hours together, from which we went to the outpatient center at the hospital for radiation treatment and her shot.
We are tentatively planning to have dinner with one of my college friends and his wife on Tuesday evening. He has lived with exactly the same cancer for 9 years, and they have been an important part of our support system.
Leaves is now starting to catch up on her thank yous. This will be an extended process, as she plans to return to work at least part-time this forthcoming week, and within two weeks hopes to be in the office almost full time as she builds back her stamina. There are the many cards she and we have received. There are the flowers, the most recent of which came from one of her cousins and his family at the end of the week. There are the handknitted scarfs, caps, etc. She has received books. Her church choir sent her an edible arrangement with lots of lovely fruits. Writing personal thank yous is important to her, and she will address all she can.
Not quite ready to go to church - not today, but next Sunday, to return to the choir. She acknowledges how many people will want to greet her, and wants to be sure that she is strong enough and rested enough to appreciate that.
Gregor (her back brace) is now as close a companion as am I. With him on she feels comfortable sitting up for several hours, or even more. On occasion she chooses not to disturb me, gets out of bed to get herself things from the kitchen, only a few steps away.
We see progress.
As she begins to return to her office at least part time (she may work additional hours by telecommuting more than her normal one day a week), while I still have to drive her, I am getting blocks of time where I do not have to be with her. For example, this morning I helped her put on Gregor and headed out to my local Starbucks to sit, watch people, and write - this update will be only part of my output.
I cannot yet seek out full-time employment, but the path is clear enough that i feel comfortable applying for teaching jobs for the forthcoming school year beginning in about 6 months - of course, that does not mean that at my age and salary level I will find a teaching job. The difference is I can apply for those now, whereas for non-teaching jobs, were someone interested in my services it would be for a position beginning within weeks, which is a commitment I cannot yet make, because my beloved remains my priority.
In the meantime, Friday evening we signed the papers for a refinance of our mortgage. As a veteran, we bought the house on the Vietnam era GI-Bill. Our most recent mortgage had been a VA mortgage. As rates have dropped, we received multiple offers to refinance. We did not lower our monthly payment all that much, but were able to arrange to skip two mortgage payments and get a chunk of escrow funds back while putting out almost nothing in up front cash. This will help cover a good chunk of the out of pocket costs for the medical treatment, which reduces financial pressure stemming from the illness and the concomitant loss of income, both in the work she has missed and in my having to step away from work to care for her.
Here's the thing. As much as I miss teaching, I do not mind.
There is something very rewarding in being able to help the person I love most with things that make a difference. She bought shoes she can slip off by herself, but still needs me to put them on, to put on and take off her socks and other clothes, to put on and take off Gregor.
Meantime, the results of my Warning from the Trenches piece originally posted at Academe and then at Daily Kos and at The Washington Post continue. I still get emails,and it has led to serious discussions about educational policy that have kept me connected an engaged my mind.
Of necessity I have had blocks of time where there is little I can do except putter around the house or read. The former means I am slowly making a dent in the disorder that has accumulated over the years, more so since the onset of her illness - remember, she had suffered from back pain for more than 6 months before we received the diagnosis five weeks ago.
As to reading? I have taken to rereading things I have previously written. At times I am surprised at how articulate I was, and begin to wonder about writing more consistently, even if I receive no compensation for it (a good friend is trying to brainstorm ways I can "monetize" my writing) - it is an important part of my own continued growth to reflect about things. in sharing through writing it keeps me, someone who is basically shy and actually quite socially awkward, connected with those populating the world in which I live.
For both of us, life has slowed down. That is inevitable when one's physical movement is restricted. It is simply not possible to do as many things or go as many places, so we begin to learn to be selective. That requires some thought, which moves us towards being more reflective.
It is that reflective portion which is key. It leads us to a deep sense of gratitude, and not merely for the love and support that has been directed out way since people found out about the illness. the gratitude extends for ordinary things, parts of our everyday existence that too often we take for granted.
I am less impatient in driving.
I no longer rush around the market when shopping.
I find enjoyment in fixing a meal for Leaves even when she is eating at an hour well after I have eaten.
Our life is not perfect.
We are far from perfect. We still get irritated at one another. But now we quickly both find ourselves wanting to apologize.
We each affirm the other, multiple times per day.
It is perhaps unfortunate that it took her illness to enable us both to overcome some of the irritations we have allowed to fester, to undercut the deep love that has kept us connected through 38 years.
Whether or not it was unfortunate, we are nevertheless grateful.
We have been reconnected with family and friends in ways we had not expected. Recently several of my former students have reached out to me in support, some by email, others via messages on Facebook (which has been of course how so often people have learned, at least indirectly).
Life is always full of possibilities. When "way closes" in one direction, perhaps we will then turn around to a path we had either previously ignored or even never noticed.
We have been giving a great blessing - to rediscover what love really means. I do not direct those words solely to the relationship between the two of us, but also to all the love we have received.
We have at the same time become more aware of opportunities of offering love and support to others - within our family with others dealing with medical issues, with an acquaintance now dealing with issues of his own cancer, with people to whom we were already connected who in reaching out to house provide us with opportunities to support and given them love, to people we are encountering for the first time: in this last group are people with whom our acquaintance was previously casual and limited and also those with whom we have connected either because of what they have read of what I have written about this, or perhaps who have reached out to me because of what I wrote in Academe about teaching and the effects of educational policy.
People have asked that even if there is little new to report, that I periodically keep them informed.
As Leaves gets better and adjusts to what her body and her doctors allow, we will continue to reconnect with more ordinary ways of living.
To connect.
But of course it will never be completely the same, and we know it.
We are learning to adjust.
We have already learned not merely to accept, but to welcome what others give us - from the medical team, to family and friends, to those we barely know.
I can be very impassioned. It is in part my Jewish background that causes me to become impassioned when I see injustice. It is why i became involved in civil rights as a teenager. It fuels much of my writing as well.
We are learning from our experience. What knowledge we gain is not for us alone, which is in part why I write about our journey.
Equally important is the understanding that is now palpable - we are able to go on with living because we have medical insurance that covers the huge expenses we are now incurring. Not everyone does, and to us that is a moral outrage. The quality of one's life should not be so circumscribed as ours would be without that support which makes possible the access to the wonders of modern medicine.
I will have more to say about this in the future. We are learning. What we learn is not just for ourselves.
As my friend from college and his wife have shared their experience with us, we choose to share our experience with others.
As we understand how we benefit, and how difficult things would be without how we benefit, our sense of justice requires us to advocate so that others may also benefit.
I don't know if these words are coherent in their expression.
It is in part because I am a teacher by instinct, even when I am not in a classroom.
I look for teachable moments.
I reflect on what we can learn from what is before us.
Ultimately, it is how I learn to live in love
-- certainly the love that I share with my beloved
-- but equally important, in a love for what the world should be
To me this is the Way Opening to a path down which I now travel.
Like any pilgrimage, how I travel is at least as important as the destination, especially since I know not how far down this path I will be able to travel.
I only know this - it is a path surrounded by love, as we have experienced in the past fiv e weeks, since first we found out and then we shared with others about the cancer.
Cancer is no longer a word that can terrify us.
Love is what sustains us, not only allowing us to go forward, but to embrace life and those in it.
Peace.