Institutions in this world inadvertently carve out an imagined life of the people they serve. It’s like the negative space in a painting or photograph: what isn’t there can communicate as loudly as what actually is there.
In my non-blogging life, I am an educator. I started my career as a public high school teacher. I quickly saw how events like Back-to-School Night assumed parents had lives that permitted a couple of free hours on a weekday evening, with the transportation, childcare, and schedule that would allow for this to make sense.
I am used to institutions and society making false assumptions about me. Some of my very early awkward moments involved being in the grocery store and having well-meaning adults ask me what Santa was going to bring me for Christmas. (I am Jewish and have never celebrated Christmas.)
This is not an indictment of society. We have to have some baseline assumptions about how the world works in order to function. To do otherwise can be paralyzing as you try to account for every circumstance. When you are a part of a group that represents less than 2% of the population, your experience may not factor in for many folks.
I find myself in a new invisible minority as I am dealing with recovery, one whose reality is not part of the imagined world of many institutions I encounter.
To play on the tagline of my blog, I often feel like hell, but I don’t usually look like it.
It is hard for people to imagine the careful strategizing that goes into allocating my very finite, very uncertain time and energy. I have anywhere from 8 to 12 good hours a day, and in that, I must attend to my health, my family, my job, and hopefully, some of my important relationships.
It’s the usual working parent juggling act, only performed on a tightrope.
As a result, I have learned to say no to things. I have become extremely discriminating about commitments, making sure they serve important goals before agreeing to them.
My work folks mostly seem to understand. My family mostly seems to understand.
The place I have had the hardest time is in parent communities.
Even before I was done with treatment, I was approached by a PTA president asking me to volunteer for something. I responded quite directly (perhaps curtly — I don’t remember — thank you, chemobrain), explaining that this would not be possible right now and most likely not for some time.
The requests do not end, and for the most part, I have gotten over the guilt of having to beg off.
But then today, I ended up in a parent meeting that was really not a good use of my time. I had originally intended to forgo it –– it was a 3 hour meeting –– but had been told directly about its importance. So I skipped my Sunday morning exercise, planned to delay my errands, and made room in my calendar to attend, not entirely certain how everything else was going to get done.
As the content of the meeting and its irrelevance to me became apparent, I felt myself fuming. I tried hard to talk myself down: They have no idea of the energy calculus that goes into every choice. This might actually have a lot of good if you had the time and energy for it.
The best I could do initially to contain the belligerence burbling inside of me was to avoid eye contact, look at my phone, and just kind of shut down. I quickly realized that whatever good this conversation had to offer would be lost on me.
At the most convenient moment, I made my exit.
On the way out, I caught up with one of the organizers. I tried hard to be a mature grown up, but all my buttons about recovery and struggling to keep up, let alone add in a 3 hour parent meeting, had been pushed hard.
With perhaps a little too much desperation, I explained my situation. I explained that my schedule is a zero sum game, that there are no extra hours to be squeezed out of a day by sacrificing sleep. The time I have is the time I have, and its often less than I think. I explained that, in the future, I need to get a full agenda so I can come for the most relevant parts.
I am not upset at the organizers. They did not mean to put me out, and were only kind and compassionate once I explained my limitations. I am not upset at the other parents. I am coming to believe that, no matter how empathetic people are, our imperfect humanity limits our ability to fully imagine other people’s circumstances. In the end, this organization assumes families have healthy parents whose Sunday mornings are free.
And, as of now, that is not my case.
Tags: appearance, changes, coping, daily life, essay, fatigue, healthy people, identity loss, parenting, self-advocacy, straight talk
Posted in Survivorship | 10 Comments »
The full version of this post is available on the Jewish parenting website, kveller.com. Click through to read the whole thing.
In 2006, my 35-year-old stepbrother was diagnosed with advanced metastatic prostate cancer. Jeremy faced his disease with tremendous grace and humor.
He died less than two years later.
His death was devastating for me. Although we had different biological parents, we became brother and sister when we were both just 2 years old. Only three months separated us, and some of my fondest childhood memories involve our make believe games and mischief together.
When Jer was hospitalized leading up to his diagnosis, I went to see him. For a few months prior to that, we had argued about something trivial. I wanted to tell him how silly the whole thing was and ask his forgiveness. Tearfully, I apologized.
With my arms around him, my voice shaking, I said, “I just need you to know this. I am me because you are you.”
“Me too,” he said, and gave me a squeeze.
This moment was bookended by another heart-to-heart exchange that happened right before he died. This time, Jeremy, frail and in pain, initiated the conversation.
He spoke slowly. “I want you to know what you have meant to me. When I think of you, I think of comfort, acceptance, and love.”
My grief was great when he died.
Read the rest here…
Tags: changes, essay, gratitude, grief, identity loss, spirituality, survivorship
Posted in End of Life, Survivorship | 3 Comments »
As I process my whole cancer experience, I realize I cannot separate what I went through from the loss of my stepbrother two years prior to my own diagnosis. Sorting through my own trauma in order to heal, I have to go back before the date I was told, “You have cancer.”
This time of year is particularly painful for me, as it was the season of losing Jeremy. As the five year anniversary of his death approaches, I will post some of the updates I sent to friends and family at the time to share with you my firsthand accounts of that time.
We just got back from spending 10 days in the Bay Area, with the goal of being of as much service as possible to Jeremy and Beth [his wife]. I think we managed to help out, but it was a heartwrenching experience.
Not surprisingly, the situation with Jeremy was more complex once we got up close to it. The first thing that I needed to sort out was the state of the palliative care/hospice issue. As I indicated in my last post, I got our family on a plane as soon as I could manage after my dad called and told me that Jeremy was being moved to palliative care only, and that the doctors did not know how much time he had left. When I got there and talked to Jeremy, however, he was still talking about treatments and such, leaving me more than a little confused.
It turns out that he has two main doctors he is seeing right now, the pain guy and the oncologist. The pain guy is advocating for palliative care, and the oncologist is on the fence. So I contacted the marvelous advanced prostate cancer specialist here at the UW (Tia Higano) who has been consulting with me pro bono. I wrote her an email saying that I was kind of at a loss and did not have the expertise to judge what the right thing to do is in this situation. My dad and I spoke with her on the phone for over and hour, trying to summarize Jeremy’s treatment. She told us in a lot of detail the kinds of questions she would have about Jeremy’s treatment in making such a decision. The bottom line is, although the pain management has become the overwhelming issue, the door has not completely closed on treatment.
But the challenge of pain management cannot be underestimated. Jeremy is on high doses of pain medication, and still has a lot of what is called “breakthrough pain,” meaning that the pain breaks through the shield provided by the medication. Jer tells me that bone pain is particularly hard to manage. He was hospitalized during our visit to address breakthrough pain and swelling in his leg. Basically, his quality of life has greatly diminished, as his existence centers around pain management. Somebody has to be with him 24/7, supervising his medication, rubbing his hip and leg, reminding him to take care of basic things that he gets too distracted to remember. It is absolutely heartbreaking to see him suffering like this. On Tuesday, he has an appointment to get something called an intrathecal pump, which would administer meds directly into his spinal column, hopefully giving him quicker relief with less medication.
The miracle in all this is how, in the moments where his pain is under control, Jeremy manages to stay Jeremy. He has every right to be bitter and angry, but instead he wants to connect with the people around him in the most loving and authentic ways possible. [My husband] Adam spent a couple of nights at Jer & Beth’s, doing the overnight caretaking so Beth could get some sleep. (Jer wakes up frequently with pain issues throughout the night.) Adam had a chance to have some meaningful conversations during those wee small hours, and he expressed our awe at Jeremy’s determination to remain loving and resist bitterness. Jeremy basically said that if he doesn’t have a lot of time left, he doesn’t want to spend it being angry and pushing people away.
And, in fact, he seems to do the opposite. He and Beth have an amazing network of friends who come to help in every way they can. One day I came over, and he was getting a massage from a friend; another day, an at-home acupuncture treatment. This past Saturday, Beth actually had to turn away about 10 people who dropped by unannounced, because Jer was too tired to visit. Many of these friends told me about how much Jeremy has meant to them in their lives. He helped them climb mountains they were afraid they couldn’t conquer; he helped them contribute their talents to one of his many causes. He has inspired love and devotion in a lot of people.
But, outside of his family, no one is as devoted as his best friend, an activist with a kind of earn-enough-money-to-get-by lifestyle. He drove his vintage RV up from LA and is living behind Jer & Beth’s apartment building, helping Beth manage Jeremy’s care (which is more than a full time job), rotating on the night shifts, weighing in on medical decisions, making sure Beth doesn’t forget herself, and hauling Jer around San Francisco to his various appointments in the big RV. Driving and sitting are uncomfortable right now, so Jeremy gets to ride in style in the RV, where he can travel lying down, take naps between appointments, and have a snack. I told Jer’s friend that it absolutely tickles me to picture him going around SF (is there a more RV unfriendly city in the US?), finding parking, managing the hills, in that old RV. He replied dryly,”Well, the disabled parking permit helps.”
So what did I do in the face of all of this? I cooked, did laundry, walked the dog, watered plants, rubbed Jer’s sore hip, ran errands. I held Jer when he felt nauseous. I insisted that the nurses and technicians in the hospital sanitize their hands before treating Jer. I made calls to make sure that the CT scan taken at the hospital made it to Jer’s oncologist. I cooked some more, coming upon a granola recipe that Jer was particularly fond of, and given his nausea and weight loss, I was inspired to make multiple batches. It all seemed so insufficient, but it felt important to do something. I did manage to wrangle a little time to talk to Jer heart-to-heart. And I can tell you that my heart is broken.
Where things are at now: We’re hoping that the pump helps increase his quality of life. He is still receiving some chemo (in pill form) in the hopes that the cancer will respond (although he has not responded to any chemo so far). There are still 2 treatments he might try if he is strong enough: an intravenous radioactive isotope that Tia told me has had a “Lazurus effect” on some of her most dire cases and, if he is ever strong enough again, the bone marrow transplant. The isotope treatment would only be able to send his cancer into remission, but if it helped him gain strength and time, it might allow for the bone marrow transplant to take place, which could theoretically provide a cure. His oncologist is reluctant to use the isotope treatment because he has lost 2 patients from it who ended up with brain hemorrhaging. But Tia (who, I might add, is reviewing his oncologist’s promotion case) thinks it could be managed with vigilant monitoring of his platelet count.
At the same time, we all realize that these options are not great. Jer and Beth are going to start investigating hospice programs nearby. Jer is definitely walking a fine line right now, and we all recognize that another big setback could make even these remote possibilities of treatment recede into the background for good.
Thank you for all your loving and supportive messages. I know there isn’t a lot to say right now, but just knowing that you all care about us means the world right now.
Tags: body issues, changes, coping, courage, end-of-life, essay, gratitude, Jeremy, pain, support
Posted in End of Life | 2 Comments »