Between Two Kingdoms: Leukemia, Transplant, and the Part After

Between Two Kingdoms: A Memoir of a Life Interrupted is Suleika Jaouad's account of being diagnosed with leukemia in her early twenties, treated for years, and then having to work out what to do next. Random House published it in February 2021.

Her publisher's page gives the outline: a leukemia diagnosis at 23, four years of treatment, survival odds she was told were 35 percent, and then a 15,000-mile road trip with her dog after remission, visiting people who had written to her while she was ill.

The illness is acute myeloid leukemia, and she was treated with chemotherapy and a bone marrow transplant with her brother as donor. Much of the material began as a New York Times column, Life, Interrupted, written from the hospital. That origin shows in the texture: sections were written while the outcome was unknown, and the book does not go back and tidy them into hindsight.

This is not a memoir of dying. It is a memoir of surviving and finding that nobody prepared her for it, which makes it unusual in a genre dominated by books written in the last months of a life.

The book is in two halves, and the seam between them is the point.

The first half is the illness. It opens before diagnosis, with a young woman in Paris, exhausted and itching, being told repeatedly that nothing is wrong. Then the diagnosis, and the compression of a whole adult future into a hospital timetable. Chemotherapy. A clinical trial. Fertility questions raised at speed. Isolation rooms. Her brother as donor. The transplant, and the long recovery after it. Her boyfriend becomes her caregiver, and the strain of that is not smoothed over.

The second half is the road trip. She is in remission, and it turns out that remission is not the ending. She drives across the United States with her dog, Oscar, meeting correspondents: a teacher, a man in prison, a bereaved mother, a fellow patient. Each visit is short. The cumulative argument is that other people's interrupted lives are the only useful map she has.

The title comes from that structure. There is the kingdom of the sick and the kingdom of the well, and the book is about the border between them, and about how badly the border is signposted.

It is strongest on the specific problem of being young.

Almost everything about a cancer service assumes an older patient. Jaouad is good on what that means in practice. Fertility decisions made in days. Careers that never started. Friends who cannot process it. A body that recovers faster than a life reassembles around it. None of this is presented as a complaint about her clinicians. It is presented as a mismatch between a system built around one kind of patient and a patient who is not that kind.

It is also strong on re-entry. Most accounts treat the end of treatment as relief. This book treats it as a second crisis. The scaffolding of appointments comes away. The vigilance does not. And there is no obvious role to step back into. Very few memoirs give that its own half of a book.

The caregiving material is unusually honest. She does not present her boyfriend as a saint or herself as easy to care for, and the account of what a multi-year illness does to a young relationship is one of the more useful things in the book.

And the road-trip half does something that could easily have failed. The people she visits are not props. They are allowed to be difficult, unresolved, and unlike her. One of them is dying. One of them is in prison for a very long time. She does not extract a lesson from either.

The clinical specifics are hers and are now some years old. Treatment for AML, particularly the use of molecular results to sort risk and select drugs, has changed since she was treated, so the sequence of her care should not be read as a template.

Her circumstances are also not typical. She is in New York, at a major cancer centre, in a family that can be present, with a matched sibling donor. NCI notes that allogeneic transplant requires close HLA matching. Many people do not have a matched sibling, and the search, the wait and the outcome look different when they do not.

The odds figure of 35 percent is what she was told about her own case. It is not a general statistic for AML and should not be read as one.

And the road-trip half divides readers. Some find it the reason the book exists. Others find it slower than the hospital sections and a little curated. That is a matter of taste, not accuracy.

Finally, this is a memoir and not a follow-up record. Jaouad has since written publicly about a leukemia relapse and a second transplant, years after the book closes. Reading the ending as a settled outcome misreads what remission is, and the book itself is careful never to promise that.

NCI describes AML as a cancer of the blood and bone marrow, and the most common type of acute leukemia in adults.

Treatment is described in two phases. Remission induction aims to clear leukemia cells from the blood and bone marrow so that remission occurs. Consolidation therapy then targets remaining leukemia cells that are not active but could still cause a relapse. That two-stage shape is why treatment for AML often means months of inpatient time rather than a course of outpatient appointments.

NCI lists the risk factors it considers established: smoking, previous chemotherapy or radiation therapy, exposure to benzene, certain blood disorders such as myelodysplastic syndrome, age, sex and some inherited conditions. For early signs, NCI names weakness or feeling tired, fever, infection, paleness or loss of normal skin color, and bleeding. Many of those are also what a hard year feels like, which is part of why AML in a young adult is often missed at first. Jaouad spent months being told nothing was wrong. That is a common pattern, not a personal failure of care. It is also why NCI's standing instruction is worth taking literally: get symptoms looked at if they do not get better after a few weeks.

On numbers, NCI reports a median age at diagnosis of 70, most cases in people aged 65 to 74, an estimated 22,720 new cases and 11,500 deaths in a year, and 5-year relative survival of 33.4 percent. A diagnosis at 23 is well outside the usual distribution.

For transplant, NCI distinguishes autologous transplant, using a person's own cells, from allogeneic transplant, using a donor's. Before either, a conditioning regimen of high-dose chemotherapy, sometimes with radiation, runs for about a week or two. NCI explains that in leukemia, an allogeneic transplant can also work through a graft-versus-leukemia effect, where donor immune cells attack remaining cancer cells.

The costs are stated too. Graft-versus-host disease happens only after allogeneic transplants, when donor white cells attack the recipient's tissues, and NCI divides it into acute forms within three months and chronic forms after that. Immune recovery takes several months after an autologous transplant and one to two years after an allogeneic one. That timeline is the medical explanation for the second half of Jaouad's book.

See acute myeloid leukemia and stem cell transplant for how these are discussed in practice.

NCI defines follow-up care as regular medical check-ups after treatment ends, including bloodwork and tests to watch for changes or complications. It describes a typical pattern of visits every three to four months for the first two to three years, then once or twice a year.

NCI defines late effects as problems that may not show up for months or years after treatment, and says early medical attention can help reduce problems that come from them. It recommends discussing with a doctor which late effects to watch for.

It also describes a survivorship care plan: a summary of the treatment received, with recommendations for care afterwards, including emotional, social and financial needs. NCI suggests keeping the treatment summary safely and keeping communication open between all providers. NCI also encourages survivors to be active partners in that follow-up, and notes that healthy changes such as stopping smoking, physical activity and a balanced diet are encouraged afterwards.

Read next to the book, that documentation sounds administrative and is not. The thing Jaouad describes lacking after remission is precisely a plan for the part that comes next. See late effects of cancer treatment and survivorship. Jaouad's argument is that survivorship is its own illness, with its own starting date. Nobody schedules an appointment for it.

It suits young adults with cancer, and the people caring for them, more directly than almost any other memoir on this list. It suits anyone who has finished treatment and found that nobody warned them the hard part might come afterwards.

It does not suit a reader who wants a clinical account of AML or a guide to transplant decisions. The book is not organised to answer those questions, and its clinical passages are impressionistic by design. It may also be difficult reading for someone currently waiting on a donor search, because her matched sibling donor is a piece of luck that the narrative does not dwell on.

• Between Two Kingdoms — publisher's page (Random House)
• NCI — Acute Myeloid Leukemia Treatment (PDQ) Patient Version
• NCI SEER — Cancer Stat Facts: Acute Myeloid Leukemia
• NCI — Stem Cell Transplants in Cancer Treatment
• NCI — Follow-Up Medical Care
• NCI — Symptoms of Cancer

This page discusses Between Two Kingdoms for education. It is not medical advice, and nothing here is a judgement of anyone's real medical care.