After the doctor phoned and told Rosemary that she wouldn’t be getting the magical new drug that we had spent the last six weeks hoping for, I kept waiting for the mistake to be discovered and corrected. This new drug was being tested in a clinical trial and, in September, Rosemary’s own oncologist had suggested it might be the logical next step. The drug she was on, her fourth chemo drug since her cancer had metastasized, was no longer having the desired effect. This new drug had had great results in a previous trial. If Rosemary weren’t assigned to the new drug, she would get the “standard of care” drug, the one she would have been prescribed if she hadn’t applied for the clinical trial.
I can’t have heard right, I thought, as Rosemary put her phone down. Surely the pain and worry she had experienced while waiting would be rewarded with the trial drug, but one look at Rosemary’s crumbling face told me that was not the case. Of course we knew there was a fifty percent chance she would not get the desired drug. It was, after all, a randomized trial. I had spent much mental time preparing myself for the “no” possibility. Still, when the research doctor phoned that morning as we sat in the waiting room at the cancer center, I wasn’t ready.
When the young man came through the waiting room door and called Rosemary in to have her blood work done in preparation for her infusion, we gathered ourselves and went in. The nurse studied the computer screen with a perplexed look on her face. “Ah,” I thought, “she has discovered the mistake and will tell us that Rosemary is to get the right drug after all.” The first nurse left the room and brought back another nurse. They both studied the computer, shook their heads and left again. I was sure of it now. There had been a mistake. Rosemary would get the celebrated drug which would, according to the three doctors who had spoken to us over the past weeks, have few side effects, work indefinitely to keep the cancer in check, and could extend her life for months, maybe even bring her to that always-longed-for diagnosis of “no evidence of cancer.”
But no, the nurse came back into the room to draw Rosemary’s blood, explained that the paperwork had been held up, that they had fixed the problem, and she could now proceed. Still, I held out hope that the world would be righted. Until they put the actual infusion in her arm, things could still change.
And then that happened and, as Rosemary sat back in the reclining chair to begin the infusion of the drug which was the back-up drug for the half of the patients in the clinical trial who didn’t get the trial drug, I had to tell myself I was being silly. Why did I think things always turned out right? As the self-help guru, Dennis Wholey put it, “Expecting the world to treat you fairly because you are good is like expecting the bull not to charge because you are a vegetarian.”
I thought then of Joan Didion’s Year of Magical Thinking, her book about the year after her husband died. She found herself doing all sorts of little things like putting his shoes carefully away, because he would need them when he returned. It takes one’s mind time to understand a new reality, even when one’s rational mind has fully grasped what has happened. When bad things happen, you hold your breath and wait for the quaking to stop and the ground to be firm again. Through the dust, you look for everything to be the same as it was. Your whole mind doesn’t adapt just like that–parts of your mind go on believing that your husband will be back and need his shoes or, on a rather less critical level, that of course there was a mistake in the drug assignment. Adjusting to the new normal, some have called it. Waiting for the world to right itself.
Last week, I listened to two friends debating what would happen in the next election. “Trump’s going to win again,” said one sadly.
“No, things swing back,” said the other. “The pendulum goes so far and then returns slowly to the middle.”
“Trump’s going to win,” repeated the first.
I read the papers about the President’s scandals, watched the results of the Mueller Report, studied the faces of the witnesses in the impeachment trial, and waited for the world to find some equilibrium. Surely, I thought, truth and goodness will win. We see such things in other countries and we think, naively, that it can’t happen here. But, sometimes, injustice does happen.
Last weekend, while Rosemary was enjoying a long awaited visit to grandchildren in Boston, a visit that had been postponed during the run-up to the clinical trial, Rosemary lost her wallet. That sinking feeling when you realize your wallet is missing stayed with me for the next few days. I felt badly that her time with the grandchildren was marred by this loss. We closed accounts and reposted new numbers for automatic payments. We scurried to get her a train ticket to replace her plane ticket home; the plane would have required identification which she didn’t have.
Sometimes I think it is because I am older and more cynical that the world seems so out of balance – the climate near the tipping point, the over-the-top extent of shopping on Black Friday, the pervasiveness of technology. I agree with my friends when they complain about the young people at the dinner table who look at their cell phones instead of the people who are there with them. “Corporate greed!” I swear at the airline companies who make the seats and aisles smaller and smaller so that they can fit more bodies in and make more profits. I walk down the streets where we live and sadly note all the empty storefronts of former retail shops that have closed because so many are buying online.
Should I hang on to my Hegelian idea of progress – the belief that the world is headed toward some wonderful end and all this back and forth is just steps along the way? Has the world lost its proprioceptive sense, its ability to orient itself in a proper way?
Rosemary and I had gone to the conference on metastatic breast cancer and heard doctors raving about all the progress with new breakthrough treatments. It was an exciting time to be researching in this area, they said–so many possibilities. The old, tired standard drugs paled in comparison, their tone implied, and we were excited that Rosemary might have access to these new developments. Some pooh-poohed the old standards and tried to convince the patients in the audience to advocate for themselves, to apply for the clinical trials where they could have access to this brave new world of medicine: targeted drugs, immunotherapy, and new chemotherapy drugs. But, drugs have to be approved by the FDA and this takes an average of 12 years, (with a few exceptions for expedited processes) so the only way to access these exciting advances is through clinical trials. I wish the doctors hadn’t been so enthusiastic about the advantages of the trial drug when they convinced us that Rosemary should enroll. The outcome might not have been quite so disappointing if our expectations hadn’t been so high.
The update of the drug story had its positive aspects, however, many of which were the points I had prepared to remember if Rosemary didn’t get the trial drug. She now has had three treatments of the standard drug and it seems to be working to reduce the size of the tumor. The side effects have been manageable. Rosemary won’t lose her hair on the standard drug, as she probably would have on the trial. As long as she is in the trial, her expenses, including the expensive rides to the cancer center, are paid by the drug company and we don’t have to depend on insurance company approval for scans and other procedures. We have found how to go on. We have righted the world.
As I was writing this, over a week after Rosemary flew to Boston, she had an email from the airline. They had found her wallet and would mail it to her. There are honest people in the world, I noted. We don’t know what will be in the wallet when it arrives; there is probably a fifty-fifty chance that her drivers’ license, credit cards, and cash will be in it. I decided to believe that it will all be there. What good will it do me to think it won’t turn out for the best? After all, sometimes things turn out right. Sometimes the world finds its footing, or we do.
Sometimes things don’t go, after all,
from bad to worse. Some years, muscadel
faces down frost; green thrives; the crops don’t fail,
sometimes a man aims high, and all goes well.
A people sometimes will step back from war;
elect an honest man, decide they care
enough, that they can’t leave some stranger poor.
Some men become what they were born for.
Sometimes our best efforts do not go
amiss, sometimes we do as we meant to.
The sun will sometimes melt a field of sorrow
that seemed hard frozen: may it happen for you.
Postscript: Today Rosemary’s wallet came in the mail from the airline (JetBlue). Her driver’s license and all her cards were in it. A check for $103.00 – the amount of cash she had in her wallet – was also in the package. YAY!!!! The world has righted itself.
Dear Brynna, Such a touching, tender update. Your writing always touches my heart. Sue and I have been navigating the challenging terrain of “cancer sucks”. My side effects have been getting worse and my docs have been discussing a change in meds. During an already emotional visit to the clinic today, my APNP brought up the possibility of getting the palliative team involved to bring in different treatment options. Of course, despite her words that this did NOT mean I was dying soon, I was again reduced to tears. This stuff is so hard. Sue and I hold you and Rosemary in our hearts. Nancy
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Big hugs to you both.
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A compelling account of what must be a shitty time. You remind me yet again of Isabel Allende’s saying somewhere that writing is always giving some sort of order to the chaos of life. Peace be within your walls, Rick
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Hi Brynna It was so good to talk with you the other day. I finally reread your blog on righting the world. You are such a good writer and story teller. Thanks for doing it. It certainly is a challenge living in this world with my present body and mind. I’ve been reading and listening to some wonderful stuff, though, that does talk about the current chaos, end of these times etc. but the other side which will come is much more a land of peace and collaboration. We “just” need to live through and with the present! HugsChris