90 percent. That was the percentage we were told of people who do not survive the severity of hyperinflamatory syndrome that attacked Barb.

90 percent.

Pembrolizumab, the miracle drug that earned Jimmy Carter an NED rating in Cancer World (no evidence of disease), chose to be less kind to my darling wife. For whatever reason, it attacked every organ and brought her to the brink of death. I must admit, I really wasn’t thinking that at the time, but Nurse Kelsey has since said she, “didn’t think Mom was gonna make it.”

I talked to my sister Cathy a few days ago and she told me she and Marietta (my lovely sister-in-law from Grand Rapids) were fearing the next phone call from me was to give them the worst news possible.

Friends and colleagues, especially those-in-the-know (all you nursing and medical folks) had seen this before. They were steeled to the real possibility, and didn’t know what to do: Prayers, encouragement and wonderful well-wishes were being sent from all over the place (you know who you are and we will be forever grateful for your kindness!).

You had every right to fear the worst. All the signs were there. But I guess I must have missed something. As I look back, I realize I wasn’t thinking about the outcome of Barb’s journey. I was thinking about the doctors, the nurses, the medical teams (eleven of them at last count) who were meeting every day (seemed like every hour, actually) fighting to keep Barb alive. I watched them during rounds, discussing levels and numbers and using that information to guide their decisions. The Green Team (infectious disease) could find no evidence of inflammation in the blood work (So it isn’t an infection?). The Blue Team (respiratory) knew that her oxygen was too low, the Red Team (cardiac) had to stabilize the blood pressure and the Yellow Team (renal) saw that her kidney (yes, only one was working) wasn’t working anymore. In fact, none of the organs were working. The Silver Team (collectively, all the ICU teams) were concluding this was the Pembro gone wild and steroids were the only, last chance. 1000 milligrams a day (an outrageous amount). The Pink Team (Dr. Rachel from oncology) oversaw the entire process and had to make the difficult decisions about how best to proceed. And every day they watched the numbers and kept up the fight.

I can’t recall the names of everyone involved (I think we used every medical person at the Brigham), but two stand out for me. Dr. Israel, the attending for the Silver Team, was the coach who drew from all his colleagues the information needed to make the right decisions. I recall one moment during rounds when he was confronted with a confounding number from the hematology team (uh oh, a team without a color!!) and said to the team, “We’re not going to get sidetracked by one number when she is getting better. We’ll keep an eye on it, but this is working.” And he was right.

The other was Dr. Snyder, a first year resident in a wheelchair, who flew around the unit at lightning speed. An exceptionally kind, good looking young man who seemed to take a liking to us. Kelsey and Bridget wanted to know how he got in the wheelchair but were afraid to ask. He seemed to always be there and during rounds, he made a point to look at us and nod his head in acknowledgement that Barb was getting better. He was the essence of encouragement. When Barb was transferred off the ICU back to the oncology floor, he visited us twice. The first time he came in Barb told him, “I don’t recognize you without your mask,” and then went on to tell him he always had the mask on in the ICU (because she was neutropenic, he said) and she kept wondering why Jeremy Mudd was wearing a mask (Dr. Snyder has a canny resemblance to the son of my doctor, David Mudd, who happens to be a medical student at Brown University). I was actually surprised Barb remembered him at all, as she was seldom conscious back then. As she told him of her delirium, he shared with her his own delirium story when he woke up in the ICU after breaking his back three years ago, while hiking alone with his dog. No one knew exactly what had happened, but they found him at the bottom of a gully, saved by the barking of his dog. Maybe that was the source of his encouragement? The day before Barb left the Brigham, he visited her again, this time with his mask back on. LOL!!! He then told us how utterly transformed Barb had become from when he first saw her. Medical people are not prone to exaggeration, but he was truly astounded at how well she looked. And this is what we’ve since heard from everyone who saw Barb during those darkest days (and even the doctors who have read her chart!) and then sees Barb today.

Today is Sunday, May Day. We will not be celebrating  missile parades in Red Square, or run around poles with colored ribbons. But we will be celebrating the incredible work of the medical teams at Brigham and Women’s Hospital, the Dana Farber Cancer Institute, and, now added to the list, the excellent rehabilitation staff at New England Sinai Hospital, where Barb is today. We will celebrate their talent, their professionalism, their heart and their caring. Without them, Barb would not be here today. Without them, Barb would not be sitting up on her own, standing up with a walker, rubbing coconut oil on her rather leathery legs (thank you Patty), beginning to text again (and soon to blog again???), laugh again and appreciate the many wonders that come all the time in life, but are seldom appreciated.

And thanks to all of you who have stuck with us through this terrible ordeal. You will forever be in our hearts.

The Brigham Teams (and rationale, if any):

Gold: Nursing (of course); Gray (or Grey): Neuro (brain); Red: Cardiac (blood); Green: Infectious Disease (gooey stuff); Purple: Dermatology (rashes); Pink: Oncology (breast cancer); Orange: Nutrition (you know, like, for an orange that you eat?); Yellow: Renal (pee, of course); Blue: Respiration (your color when you aren’t breathing); Brown: G.I. (self explanatory); Silver: ICU Team (they would have been Gold if we hadn’t already awarded that to the nurses)

And no real celebration is complete without:

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Written by barbigelow

Wife, mother, school psychologist, cat lover

6 comments

  1. Awesome news to celebrate!!!
    Yay!!!!😃👏👏🎈🎈❤️💚💙💛
    Continuing my love n prayers for you all!!
    Peggy

    Like

  2. Congratulations, Barb, Tim and family on the move to rehab. I am so thrilled that you continue to recover and regain strength. I have been following your blog, Barb, since July. There was some link via one of the sites I follow (maybe MBCN?) as a Stage IV breast cancer patient myself. Your story grabbed me immediately as I, too, am a school psychologist. What a strange and small world. I went on permanent medical leave in July, 2015, 3.5 years after my Stage IV diagnosis. It has been so difficult to let go of the world of my school (I did school psych with our citywide 0-5 ECSE program, the babies as opposed to your teens) of my and professional career, so many years in the training and making. Hello, life as full time patient! I send you sincere wishes from Minnesota that you continue to strengthen and can resume some normality, whatever that looks like.

    Like

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