Sleeping Beauty/Lazarus

Hello, it’s me, back from the brink. Last time I wrote was about 8 weeks ago when I began the story of my untimely demise. Truth is, I had not been feeling well long before Easter. I felt most unwell much of the time, not just the few days after chemo. I felt myself receding, washing away. I stopped eating about two weeks before then, unable to muster an appetite and near constantly vomiting whether I ate or not. I slipped up once with my work wives and said I didn’t know if I could do this anymore and saw the furrowed brows and concern and kept to myself. Everything was a struggle. When I saw my doctor I mentioned the embarrassing rash on arms and chest again and she prescribed steroid ointment which did little to help. I mentioned the 10 pound weight loss in two weeks but got little response. I had lost 20 pounds by now from chemo so it didn’t seem like such a big deal. I think I wasn’t forceful enough, no one seemed to be paying much attention–I’d been in treatment for a year already, it gets old.

And then came Easter after a night in the ER with an inflamed catheter port. I was sent home with antibiotics. I could barely function the next day or the days after. On Tuesday I saw Dr. Rachel and had chemo and she said the port had to come out. I was sent to interventional radiology and they felt differently, the port stayed. I slept for 24 hours and went to work where I began vomiting a half hour in. The nurse was sent for–I had chills, shaking and a fever. She sent for Bridget who brought me to the ER at Brigham and Women. The port was removed surgically on Friday and I spent 7 days in the hospital, delirious. I remember very little about that time, thankfully.

After 7 days I guess I seemed stable to them and they sent me home. That lasted about 20 hours–again, I don’t remember much. My fever returned at 105 , my blood pressure went haywire and my breathing became erratic. I was placed in the ICU at Brigham and began the worst period of my life.

After searching everywhere, high and low, they could not find the source of my “infection” and I was clearly dying. I was hypotensive and developed hypoxic respiratory failure. The working diagnosis was hyperinflamatory syndrome with multi-organ failure, renal failure, liver failure and I now required hemodialysis. (Actually, Hemophagocytic lymphohistiocytosis) It was determined that the likely cause was the immunotherapy drug, Pembro, that was the cause of all this–the one in a million wrong reaction–and I was having a complete multi system breakdown and not expected to live. My family made the agonizing decision to have me given a paralytic and placed in a hospital induced coma. I had less than a 10% chance of surviving. I was intubated because I was no longer able to breathe on my own and my vital signs were too unstable. (You can read about their feelings about this in the previous guest blogs.) In a last-ditch effort to save me they administered 1000 mgs of steroids.  All I remember was that I was locked in a terrifying nightmare with no escape. I hallucinated and became psychotic. I did everything in my helpless state to try to understand where I was, how I got there and why I was abandoned. In my mind I lunged after nurses, pounded on doors, cried for hours for help and begged for it to end. At one point I found myself kneeling on a sidewalk on a hot summer day after a sudden rainstorm and I saw an electrified grate. I tried banging my head on that grate for hours thinking the electricity would shock me awake–to no avail. None of my dreams were happy or pleasant, no white light, only despair and loneliness. The hours seemed like days, the days seemed like years and I was losing hope. I vaguely remember people talking to me and poking me and hurting me. I could not get a foothold on anything familiar and my family had vanished. Why was I in purgatory? Who would leave me like this? Would I ever get home?

A week later ( I am told) they lifted the sedation—-as soon as I could speak I hoarsely said to stop all treatment and send me home, wherever that was. WTF? I said that? I saw the worried, frightened looks and heard the word hospice. Apparently a call was made to Tim to get there immediately, I had lost my mind. I guess Tim received a lot of calls about my critical condition, circling the drain, skating on thin ice, my temperature of 106. I was put out again and when I woke I was in a strange room on the 16th floor with strange people walking in and out and touching and talking to me. Tim and Kelsey appeared but they really weren’t Tim and Kelsey–they were imposters who said things to me that made no sense and they seemed nothing like themselves. In fact I felt everyone was an imposter, a fake, lying to me about where I was and what was happening. Bridget seemed the most like her self since she isn’t one to bullshit but my paranoia and hopelessness grew. As a psychologist I knew I was mentally “altered” but helpless to do anything about it. I tried to play along with them but a rising fury was growing in me and beginning to bubble over. I went to dialysis and Dr. Rachel suddenly appeared. I unleashed on her. Told her she was a figment of my imagination and hadn’t done enough for me. (That went well, I think she was crying). Compounding this was my inability to move. I had lost all muscle conditioning–couldn’t sit up, turn, walk, eat, roll, use my hands. I was a frozen immobile body on a bed, dependent on others for help I wanted so badly to reject…Two days later I was consciously sedated to have a central venous line sewn into my neck despite heavy bleeding and it seemed to jolt me back into my former self. Sleeping Beauty woke up.  I came out as Barbara once again and thus began the atonement tour where I had to apologize to my husband and doctors and nurses for all the terrible things I had said and accused them of. Poor Tim.

That night I begged him to stay over night because I was so afraid of being alone. Kelsey’s best friend, Katie, also an ER nurse, was there too. At 3:00 in the morning the bleeding in my line would not clot/stop. She actually sat on my chest for hours trying everything to apply pressure after the attending doc had tried a clotting compound unsuccessfully. I threatened to kill her if she didn’t get off me. She was either MacGyver or she was going to kill me. This lasted a few days and yes, she is MacGyver.

Now the recovery phase started—-3 days a week of dialysis at 4 hours a time–all of my blood drained out of me, cleaned of toxins and returned at 97 degrees, yuck, I hated it. Kelsey seemed to think I was more lucid after each time as the toxins were cleared. I next began the arduous task of learning to swallow after failing two swallow studies. I hated the clinician and referred to her only as “spit” since I was not allowed to swallow anything that wasn’t thickened including water. I lusted for a coke or a cold glass of anything. Still unable to eat, I had a blood clot in my throat from a failed attempt to put in a feeding tube that left a large tampon like thing in the back of my nose for a week before they pulled it out. On too may meds to count, they all had to be crushed and given to me in apple sauce which I plan to never eat again. Everything had to be done for me–brushing my bloody teeth, turning me hourly in bed, scratching etc. I begged to go home and was met with stone faces.

Finally, a life raft! after a month at Brigham they were sending me to acute rehab to continue dialysis and get PT and OT. Ambulanced there on a cloudy day, the work began immediately. I bent my knees, rolled on my side and pushed myself up I bed. The days passed–3 hours of therapy, dialysis and napping. I sat up on my own, learned to stand, began to actually pee, regained use of my arms and eventually some use of my hands. Wheelchair trips around the hospital to lift my spirits and eventually a few tentative steps on a walker. I learned to wash my face, brush my own teeth, hold a spoon and fork, write my name, apply lotion and best of all-SWALLOW! I guzzled everything in sight. Ice cream 3 times a day and milkshakes. Despite this I had lost 40 pounds which was holding me back from some of the more physical things I wanted to do. I practiced in their simulated grocery store, kitchen, bedroom and living room. I used a seated elliptical, practiced getting in and out of a car, making a sandwich, loading a dish washer, getting clothes out of a closet and a few more tentative steps within my bedroom on a cane to use the bathroom. I was actually making urine and my blood work was normalizing. I skipped a dialysis to see what would happen. I kept on peeing!!! Meanwhile Tim and the kids came daily and Jack and my sister-in-law and brother and niece Kate and Katie the nurse. I was getting stronger and happier. The PT and OT said I was recovering much faster because of my physical ability before this all happened and dedication to exercise normally. My 40+ doctors are amazed at my survival and recovery–one said I re-inspired his faith in critical care medicine. (Next time get someone else!)An ambulance trip to Dana Farber and it was decided I could end dialysis and prepare for home. My renal function had come back. Tim happily went about outfitting the house with handicapped equipment.

We celebrated Bridget’s 25th birthday and Mother’s Day in rehab–different but still good and on May 12th I was discharged after 7 and half very long weeks. The next day–back to Brigham to have my central line pulled—-untethered at last!

Tomorrow begins week one of my new life. Tim goes back to work. I have a visiting nurse 2 x a week and a visiting PT and OT. I figure I can rally a few people to come and check on me once a day to make sure I’m okay and haven’t fallen (while Bridget is away this week). I have a med box since I still can’t open bottles or pills. Occasional small dinner meals would be appreciated since I am not allowed near the stove (No red meat, No desserts). I plan to continue to work really hard to regain my independence but I am a lot more patient now. I know it doesn’t come overnight and I have to put trust in myself and Tim and the girls. Even a bad ass has to wait. I will meet with Dr. Rachel in a week or so and plan some cancer scans and whatever chemo comes next, hopefully when I am stronger. I have a long way to go.

Love to all who prayed for me, sent cards, gifts, thought of me—-it worked. I am here.

XOXOXOXO

Barbara, Tim, Kelsey and Bridget❤️❤️❤️❤️❤️