We all mustered our strength and headed in to Penn on Tuesday, May 29th for admission. I was about to learn a whole new repertoire of treatments and procedures; a whole new world of people on whom my life depended. PICC line placement, bone marrow biopsies, chemotherapy, red cell and platelet transfusions and anti-emetics. Induction, consolidation, c-dif, mucousitis, oh my.
I had to get used to many different people a day asking about my bowels and every other bodily function. Every four hours there came someone to take blood pressure and temperature readings. All hours of the day and night were interrupted by questions of how my body was dealing with the treatments.
Once chemotherapy started on May 31st, I was hooked up to the IV, pumps and pole as my constant companion for seven days, 24 hours a day. The IV pumps filled my veins with chemotherapy, anti-emetics, blood, platelets, pain medication, sleeping medication, medicine to protect my kidneys, electrolytes, etc. Daily bloodwork was drawn and my organ functions analyzed.
The second day of chemotherapy I watched from the computer at the hospital, with my nurse Charlotte, while my last foal (baby horse) of that year was born. I was on the phone with my husband while he was on hand for the delivery. I named him right then- Rhoads Six, after the hospital wing and floor on which I was treated.
I quickly named my constant companion, Fred. When I was feeling up to it, Fred and I would go for endless walks of the 1/8 of a mile loop around the Rhoads Six hallway. My friend also had to accompany me to the bathroom which is horribly awkward clanking through the door, bumping over the threshold, turning around bumping into the toilet and the sink. All of this while trying to keep the IV tubing from falling into the toilet and trying to maneuver my fabulous hospital gown out of the way. A feat if one is in top form but add on overwhelming weakness, nausea and diarrhea and it was just pathetic.
Showering with Fred was another exercise in coordination. First of all I had to have a plastic wrapped around my arm where the IV went in, then get the hospital gown unsnapped and get otherwise undressed. I was determined to shower and wash my hair daily at least until my hair fell out. It was my one seeming luxury every day. My blond hair was thick, straight and down my back to my shoulder blades. The nurse practitioners told me my hair would probably fall out starting day 7 to 10 after starting treatment. I tried to prepare myself for this eventuality and just enjoy my hair for as long as I had it.
Day 7 came and went with no hair loss, day 10, no hair loss, day 12, no hair loss. The doctors, nurse practitioners and nurses were surprised. I was starting to feel a little cocky like maybe I wouldn’t lose my hair. Hah was I wrong.
I had always thought it wouldn’t be that big a deal; it’s just hair right? Day 15, this mornings’ shower and hair washing produced handfuls of long hair. Chanel, one of the nursing assistants, offered to cut my hair short so it wouldn’t be so awful with the long hair falling out. She did that and then I just asked her to shave my head with the clippers. When I looked in the mirror it was right there- the first time I looked at myself, I couldn’t be in denial anymore. The overwhelming situation I was in was clear. I was really sick, I’m really getting tons of drugs to try and save my life. I’m in serious danger of dying. Dear God this is real and it has only begun.
The same day my hair fell out I found out that the first round of chemotherapy did not put me into remission so I had to start the second induction hooked back with Fred 24/7 and start the chemotherapy again. Devastating. I was also getting sicker as the delayed effects of the first round of chemotherapy so I was spending more time in bed, losing weight, losing strength and settling in to my new life as a patient.
Six days after the last dose of chemotherapy another bone marrow biopsy and the worry of whether this one would come back clean. I won’t think about if it doesn’t. I’m starting to feel sick, really. I started with fevers, uncontrollable fevers in the evenings, more bloodwork, chest x-rays, CT scans, blood cultures, urine cultures, fecal cultures; all so scary and mortifying at first, now just routine. I was so sick and delirious with fevers that when I got the results that my bone marrow had come back clean it almost didn’t register. Dr. Frey and NP Brooke Goodspeed were so excited to give me the news but I think I just kind of looked at them blankly when they told me the good result. I had two weeks that I call “hell weeks #1 and #2”.
The fevers escalated to giving me shaking chills, hallucinations, nightmares and delirium. I had diarrhea, body wracking coughing that then led to painful wretching and vomiting. John would come in the evenings and put towels in ice water and then cover my febrile body in them until the fevers subsided and I would go into fitful sleep. My nurses, especially Keith would do everything to keep me comfortable and quiet during this time. During the worst of things he got me moved into a bigger room with a lovely view of the Penn campus. I only got to enjoy the view for a day. I woke up the next day with a big blurry spot in the middle of my visual field in both eyes.
Click here for Life After Transplant.