We have been home in Santa Cruz nearly ten days. Tad has decided he needs to be here to make a decision about his next treatment or whether to stop altogether.
It has been especially trying for me. As much as life in Seattle felt totally rudderless I at least had adrenaline from the adventure of having to do everything from scratch. Plus I had some relative structure: walk to hospital, check in with nurse, spend five or six hours with Tad, walk home from hospital. Shop, eat, sleep, repeat.
I am trying to find those things back here in Santa Cruz but there is something about the not-knowing that is painful and distracting. I have begun developing symptoms of depression: sleep patterns awry, dark thoughts, irritability. My mind has been reeling with what I think is the best thing to do and what life back in Seattle might look like.
Fortunately I have the wherewithal to remind myself the biggest mistake I could make would be to try to impose on Tad my idea of what is right for him at this most difficult juncture of his life.
Clearly I am not the only one finding this terribly uncomfortable.
One of the local oncology nurse practitioners who makes sure Tad gets the blood parts that keep him alive called me just as I was entering a spa to get a good soak and a massage (a weekly pleasure I enjoy in part thanks to the loving financial donations from friends and family):
- "Greg I don't how much longer we can keep giving him blood like this. We need a plan."
- "But Kelly we have a plan. Our plan is to give Tad two weeks to decide to treat or not."
- "Yes but we don't really have a treatment plan. He is no longer seeing the leukemia doc at UCSF."
- "Well no - we're not seeing him. But we're not not seeing him. We're figuring things out. HE is figuring things out."
- "But we need to have a doctor directing this. We can't just keep using our office to give him the necessary blood parts if he is not under the care of an oncologist."
- "Why not? They're keeping him alive. Besides your boss IS an oncologist."
- "Greg we need a plan. Soon. Can you just ask him?"
I begrudgingly agreed to talk to Tad and let him know some of the local caregivers were getting anxious. I also asked him, without wanting to influence, which way he might be leaning. He confided in me he was leaning towards treatment.
This reply set off a whirlwind of responses in me. My head filled with scary images of him being pummeled by chemo once again, of him dying in Seattle and me figuring out how to get him home. But I also had lots of calming images of me organizing my new life up in Seattle for the next six months: sub-lets, road trip, maybe a book project.
The next day the doctor from Seattle sent an email sharing the response he'd received from his colleagues at Stanford. Lo and behold, they are willing to do the same treatment here in California - only one hour away from Tad's house.
I sat with the news of the email for several hours before I shared it with Tad. I really wanted to deliver it with as much neutrality as possible. After all his mind was still not entirely made up.
The impact was huge: an incredible weight lifted from his shoulders and a good sob ensued. He could get the possibly life-saving treatment AND be close to home in case he dies. We would not need to move our household (kitty included) to the Northwest for him to find out if he can survive this disease.
Our joy however was short lived.
An hour later we had an appointment with Tad's local GP, a caring woman who has been a huge anchor for him for many years. The whole meeting took about one hour but the upshot is that she explained she'd had a long conversation with the (above-mentioned) nurse practitioner and they both agreed that the best possible solution for Tad is hospice - though she couldn't really explain to us what hospice care looked like.
"We think these oncologists are not telling you the truth. We just can't see how the treatment can work."
This whole exchange felt like a violation of trust. These caregivers are of course allowed to have an opinion but they were inferring that Tad needed to accept their opinion as the only truth. They also said "for clinical reasons" they may not be able to support him through the other decision i.e. getting treatment.
This last part is still a mystery to me and feels like blackmail. We will need to have more in depth discussions about this.
Tad felt like he had been hit in the stomach. His two closest allies til now are feeling they can't respect his request to take a two-week break, saying that they know better than the oncologists and inferring that if he doesn't opt for hospice that they won't be able to be the local point persons who support him medically.
(I'm going to linger on this topic of hospice and skip all the description about the rest of the day and the hours spent trying to get Tad back on an antibiotic he had got in Seattle but that the local doc doesn't want to pursue except now that she knows more details about what the folks in Seattle found she does want to pursue it only the insurance doesn't want to pay for it and needs a special dispensation and the pharmacy is asking us to pay $80 per pill for 20 pills because it's almost the weekend and they can't get hold of the insurance company but the social worker thinks she knows somebody at the insurance company and Tad is getting visibly sicker and sicker from some infection that looks a lot like the one that landed him in the hospital twice already and all the doc can talk about is hospice and I'm thinking that none of these people has had the experience I've had living in France where medical care is a citizen's right like postal service or access to a courthouse and that this is all so fucked up.)
Twenty years ago 80% of people with leukemia died quickly. Today new meds and new techniques are turning that statistic on its head. But it's far from perfect.
This in between-ness is why a good part of the last two months has been about this exhausting roller coaster wondering whether there is or isn't a treatment, whether we can access it or not, whether we need to move to a different state to access it, whether it's worth trying or not. Everyone has an opinion. And as long as there is one fairly credible doctor saying there's a chance of survival it's incredibly hard to take the other hospice opinion seriously.
I would be dishonest if I didn't admit that there are plenty of times when I simply want this to end. My conscious mind doesn't allow me to go into details about what that end might look like. If I stop and look at our life, at Tad's slowly deforming body, at the fact that he is more and more dependent on me to the point that being able to go spend a couple of days at my own place in San Francisco is nigh impossible - I find myself without any hope of a healthy outcome. Plus I've worked in hospice. I see how amazing it can be. But the folks who arrived at our door had already been through all of this miasma.
I've read the studies about how treated populations compared to similar hospice patients have vastly different end of life experiences and the more positive ones are experienced by folks in hospice. Folks in hospice live longer, have better quality of life indicators and the people who survive them experience less depression. But the study focused on patients who had wanted to keep trying even though the doctors all believed nothing would work.
During our conversation with Tad's GP it occurred to me it's really not easy to sell the hospice option to a patient, particularly a younger patient. In one case the outcome is absolutely clear, in the other it just isn't, there is a glimmer of possibility of living. Even though we know that the chemo option will be painful - it is familiar. We've experienced it before. And human brains prefer to cling to the familiar rather than venture into the unknown. And what could make an adventure into the unknown more frightening than the fact that we're absolutely positive it ends in death?
Plus we're a hopeful species. Romeo and Juliet remains one of the most compelling works in the English language because we hope beyond hope that their love will be victorious. We don't wish for them to "get real" and just accept the fact that no Capulet has ever married a Montague and it's 90% unlikely to happen. We love a good fight and we love to cheer on the victor. People easily get behind Tad and this struggle, they encourage him to keep getting treated inferring it's the strong courageous thing to do. I imagine rooting on Tad is an indirect way for us all to push back against our own inevitable death.
So just how do we compel another human being to say those most difficult of words: "I think I want to stop trying now. It's time for me to accept I am going to die of this."?