Jasmin Stacey

Tribute

My dear wife Jasmin and I were lifetime soulmates, and we loved each other very deeply for the past 42 years. Jasmin had her first battle with lymphoma back in 1999. That time it was diagnosed as Hodgkins lymphoma, and after 6 months of heavy chemotherapy and radiation, followed by 6 more months of recovery, she was given the all-clear. Over the following years she continued to be active and enjoy life to the fullest but gradually slowed down as some after-effects kicked in, including autoimmune hepatitis and Sjogrens syndrome, so she was put on various medications including immunosuppressants. (Sepsis and CancerSepsis and Impaired Immune System, Sepsis and Autoimmune Diseases)

Unfortunately, in April 2013 she had a tumor grow in her neck, which was diagnosed as Stage-IV non-Hodgkins lymphoma. It was identified as diffuse large B-cell lymphoma, a more aggressive and fast-growing form of lymphoma than she had before. Her oncologist was a very experienced senior doctor from Stanford who tried her on a new form of immunotherapy called Rituxan. Over a period of some months, this shrank the tumor somewhat, but after 4 treatments it was resisting further treatment, and she was told the only remaining option was to have 6 treatments of R-CHOP chemotherapy, which she bravely started in January 2014.

This chemo regimen was extremely harsh, and even after just the first treatment she had a terrible time with nausea, vomiting, mouth abscesses, constipation and extreme fatigue. The treatment also depleted Jasmin’s white blood cell count close to zero, although we didn’t realize the huge risk of this condition until later.

Four weeks later at the end of her 2nd treatment of R-CHOP, as the nurse was unhooking her from the IV, she told Jasmin that she should come back the next day for a shot of Neulasta to raise her depleted white blood cells. If only the oncologist had told us about this shot before she started the chemo that day, because Jasmin remembered having a shot of the original version of Neulasta (called Neupogen) back in 1999 when she first had chemo for the Hodgkins lymphoma. That time she had an excruciatingly painful time from the bone pain that Neupogen causes, so this time she totally refused to have it. I called the doctor and told him this, and he said it was OK if she didn’t want it, so she didn’t have it. Unfortunately this turned out to be the most terrible decision he and we ever made, although for us it was made in ignorance because we weren’t warned about what sepsis is, the huge risk of getting sepsis while her WBCs were so low, and how critical it was to have a Neulasta shot to boost her immunity and help her to fight off sepsis. We really knew nothing at all about sepsis, and the deadly dangers of it, so we didn’t understand how critical it was that she should have the Neulasta shot.

If we had known about this shot before she started the chemotherapy she may have refused both the chemo and the Neulasta, and we could have had a very serious discussion with the oncologist about the pros and cons of both options. Neither was a good option, but as we never had that discussion she had the worst combination of all, the chemo but no Neualasta.

Ten days after the second round of chemo, in the middle of the night, Jasmin seemed to get weaker and started becoming a bit incontinent and incoherent. Nothing in the chemo training we had been given said anything about these symptoms. She didn’t have a fever or chills, and her temperature was 99.5, well below the 100.5 limit we were warned about, so I just called the doctor and left messages as instructed. What I later realized after countless hours of researching on the internet, was that these may have been early signs of sepsis that was taking hold of her because her own white blood cell count was so low and she had no immunity to infection, but I had no training in how to recognize the symptoms and to treat them as a dire emergency. We were only coached in how to deal with the awful side-effects of the chemo, and that’s what I was programmed for.

Next day, when the doctor’s office at last returned my call she was even worse, so I called 911 and got her to the ER. Then they moved her to the ICU. The word “sepsis” was never mentioned until the 2nd day in ICU, and even then it was day 3 before they identified that it was caused by a very aggressive bacteria called pseudomonas aeruginosa which had started as an infection in her lungs. This bacteria is very antibiotic-resistant, so the broad-spectrum antibiotics such as Zosyn she was given at first were mostly useless. After 4 days and nights of pumping fluids and antibiotics into her, and watching them do extreme things trying to save her, it all spiraled out of control. Her blood became very acidic, she had a series of strokes and her organs started shutting down. She went into a code blue cardiac arrest and was gone.

After this all happened I had some very serious talks with her oncologist about what went wrong, and he agreed that they need to do a better job of educating chemotherapy patients and their caregivers about the dangers of sepsis, especially when their WBCs are depleted by the chemo, and on how to spot the earliest possible symptoms of sepsis getting started and to treat them as an emergency that needs a 911 call without delay. All the training we were given by the oncology clinic was in a 10-page handout on how to deal with the many horrible side effects of R-CHOP, but there was no mention of sepsis. What little we knew about sepsis was in the context of surgery in hospitals, but we didn’t realize it was a deadly risk for Jasmin sitting in her own home and being very careful with hygiene. Whether it would have made any difference to the outcome if I had got her to hospital quicker we will never know, but it will torment me for the rest of my life that maybe I could have done better for her if only I had been trained about sepsis and how to recognize its symptoms, and treat it as a 911 emergency.

Of course, prevention is infinitely better than cure, and with 20-20 hindsight there can be no doubt that her best chances of survival would have been to have the Neulasta shot to boost her white blood cell count and give her body a better ability to fight infection, but the oncologist had told us it was OK if she didn’t have it. Apparently even he was not aware of the terrible dangers she faced by not taking it.

This is where I would like to contribute, by partnering with the Sepsis Alliance and helping to improve the level of awareness of sepsis for oncologists themselves, and in turn helping them to provide better training to their chemotherapy patients of the dangers of sepsis, of how to spot the symptoms at the earliest possible time, and to treat them as a 911 emergency.

Source: by Chris Stacey (Jasmin's husband)

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