I'm not sure there are words to accurately describe what just happened. The best I can say is that Mr. Dante, sir, your very vivid portrayal of hell's seven layers was incomplete. There is an eighth layer of hell and it's name is IL-2. The steady, painful but manageable, descent of doses 1 through 9 ended in a complete skull-shattering breakage of self at dose 10. On the way down, I knew it was uncomfortable, I was throwing up, I had massive chills and shakes, had unholy amounts of diarrhea, and gained over 20 pound of water weight in 2 days (the best way to describe that was that it looked like I was wearing fat makeup for a movie - I was unrecognizable). But still the same, I had the audacity to ask Jeff how anyone would be able to say they wanted to stop the dosing, knowing that the dosing might save your life. And then I hit dose 10. It didn't matter if I had wanted to continue, the doctors wouldn't have let me. They were on the fence about the tenth dose and afterwards there was no question about continuing. The next few days (Sunday through this morning) are only flashes. I cannot piece together a timeline and in some cases I'm not sure what is real and what were hallucinations. I'll start with the facts. After the tenth dose, it felt like I fell to the bottom of a dark, lonely pit and smashed into 1,000 tiny pieces. The worst was the headache. It felt like my skull was splitting open every time I opened my eyes. I was only able to open my eyes a few times a day, while I was fading back and forth from wake to sleep. I also had a terrible soar throat, which made drinking next to impossible. When my eyes were open, I was hallucinating. First I saw hundreds of little brown insects flying around my room and crawling all over the curtains. I also saw hoofed, antlered animals walking back and forth on the other side of my curtain. I saw tree branches growing out of everyones' heads, I saw words and math equations scribbled all over the walls, I saw flashes of lightening going off continually. When my eyes were closed, I didn't know where I was or who was in my room with me. I saw full episodes of TV shows that have never existed. I thought we were at the ballet, in a dark auditorium filled with people. I heard voices talking all the time and I have no idea which were real and which were not. Physically, I couldn't lift or move my head without excruciating pain. The slightest movement made me nauseous. I knowingly soiled myself at least six times (to the point where the diarrhea was being treated with opium). At one point, I was laying on the floor with my head in a bucket. There are itchy sores all over my body and my face looks (and feels) like someone ran a cheese grater over it. I couldn't stand any amount of light or noise. My poor sweet Jeff, sat by my side, in the dark, for 15 hours a day. My cousin, Jason, came to visit Monday and all I remember is that he hugged me when he came and when he left. I could hardly talk, I couldn't look at or read anything, and even hearing things made me feel sick. I thought I was broken. This morning, when I opened my eyes, the only reason I didn't let out a scream of utter pain and terror from the torture inside my head was because I was physically unable to make sound. The nurse who was taking my vitals looked at me and said, "okay that is enough, you have had enough." She then called the Fellow on call (Fellow as in research Fellow - between resident and attending physician - not as in "for she's a jolly good one") and got me some headache-curing ambrosia. Since taking that (and blowing out 10 tissues full of blood), I have been feeling much better and am crawling my way back up to the top of this pit, with the terrifying knowledge that I am going to have to do this all over again in about a week.
The way that I felt was indescribably terrible, but it was not dangerous. The doctors and nurses were monitoring me constantly to ensure that my blood levels, organ functions, and mental capacity were sound. They came every 4 hours to take my vital signs, and came almost as often to ask me math equations and to spell words backwards to check for mental capacity. During the days that were mainly flashes, I have distinct memories of Dr. Hong (another Fellow) coming in to ask me to count down by sevens from 100 and to spell "world" and "nurse" backwards). Dr. Hong even called Jeff at home after the 9th dose (which was around 11:30pm on Saturday night) to tell him that they would probably go ahead with the 10th dose Sunday morning, but that would be it. They took a very large amounts of blood (sometimes up to 15 vials at once) to use for my treatment and for research purposes. I had continual IV drips of anti-nausea, anti-diarrhea, saline, and other fluids. The care was phenomenal, from the doctors, but especially from the nurses who I saw much more often. They knew exactly the right tone of voice, when not to turn on a light, how to take blood and change IV medications without waking me up, when to come in just to say hello and ask how I was feeling. Even nurses who weren't assigned to me at the moment would come in to say hello - like Christine, the woman with the baby one week older than Kai. So far, the care I have received here has made me feel like I am nestled safely in a healing hug.
Just so I am not too biased, I will point out three things that seemed to go "wrong." First, we were told that all of the "feel better" IV drugs would stay for 24 hours after the last dose of IL-2. That didn't happen, they were removed almost immediately. Second, one of the weekend nights I ran out of toilet paper and after a 2-hour search, the nurse came back with a box of tissues. Now I appreciate the improvisation, and really there's not that much difference between the two, but if your diarrhea is bad enough to be treated by opium, a box of tissues is not going to do it. It seems strange how difficult it is for the nurses to find everyday housekeeping items, such as toilet paper, after hours. Thirdly, during one of the hazy days an X-Ray was ordered for me accidentally, which may not seem like a big deal, but meant numerous people talking loudly in my room, with all of the lights on, all moving me this way and that to get me on the X-Ray board. After they had finished, someone yelled down the hall, "Whoops, wrong patient." That was the incident that led to me laying on the floor with my head in a bucket after soiling the bed. Things happen, I am not complaining, I am just trying to give an accurate description of my experience. And as horrible as this treatment was, I would not undo it, because it could be my cure.
My sweet, sweet Jeff has been a godsend. Not only has he been caring for me 15 hours a day, he has also been dealing with a broken heater and dishwasher at the house, coordinating everything with the baby, and even doing work from home. His constant love and support have been the lifesaver that has gently pulled me out of this seemingly bottomless pit to lay me lovingly on the hope-filled ground above. In all the years that we will have together, in all of the times I will be there for you, for this I can never repay you. You are my heart, you are my soul, my are my every breath.
Today is Wednesday. I came here this past Thursday. That means I have not seen my precious baby Kai in six days. We thought about bringing him today, but I was not yet well enough. Maybe tomorrow. I know he is in good hands - Jeff's parents are lovingly caring for him night and day. But I am so afraid that he has forgotten me. A week is a long time to such a little baby. What if he doesn't know who I am when I get home, or worse, what if he doesn't care. It feels like we have been apart for months. The longing I feel for him is tangibly painful. I am nervous and excited to see him both at once. Excited, because he is my angel and I cannot wait to hold him. Nervous because I am so scared that I won't see any recognition in his eyes when he looks at me. I can only hope that the bond we have is strong enough to carry us through this week together and that, on some level, he holds me somewhere in his heart just like I do him.
So I'm on the ascent back up now. I will probably be able to go home Friday. I cannot wait to sleep in my own bed, shower in my own shower, and hug my baby with all my might. I have to come back the 21st to do this all again. I honestly do not know how I am going to find the strength to do this again, knowing what I know now. Of course I will do it - it could cure me - I will do anything to make sure my baby has a mother. But I will certainly enter the hospital with a heavier heart for round two. This week I will work on focusing on the curing aspects of this treatment. I will be thankful everyday that I have the opportunity to receive this care. I will take the nurses' healing hug with me so I can return in it ready to fight again. I will hold my baby, I will kiss my husband, I will visit with my family, I will talk to my friends, and I will eat cookies. And then I will come back and kick some IL-2 ass all over again.
Today I am thankful for the comfortable tempurpedic hospital beds; the caring doctors and nurses at NCI; my mother- and father-in-law for taking care of Kai; our wonderful family and friends; my absolutely perfect husband to whom I am forever indebted; and my sweet precious baby Kai. Please know that I will be home soon. Please know that every ounce of my being longs to be with you. Please know that our time apart now means so much more time together later. And please know how lucky I feel to get to be your mother.