September 4th, 2012
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.
This entry was posted on Tuesday, September 4th, 2012 at 7:00 am and is filed under End of Life. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.