Home from first HD IL-2

I kept feeling physically exhausted till I thought I had nothing left. I made the 13th of 14 doses while usually people stop at 9 with the doctor hoping that you'll make 12. I'm so glad to be home although that will fade quickly with the 2nd week needing to happen starting next Sunday. I had other symptoms. When the weakness started fading I realized that retaining water (20 lbs!) was lingering on. My legs felt very weak. The water made me feel like I had just had the biggest meal of my life but it lingers on for some days. I had not really thought about the water, thinking it would go away and then I would work on the weakness. The doctors (a few saw me at the hospital with Dr. Quinn in charge but with another doctor bringing in residents and fellows in the morning).

When I went home on Saturday, 2/13, I felt good but weak when I got home. I took a very shallow bath (I had the PICC IV line still in my arm for next time and can't submerge it). When I dried off and dressed I sat in the recliner and fell asleep for a couple hours. I woke up feeling huge still. Julia came by to pick up her kids and she, Cheri and I chatted for a couple hours. When she and her kids left I was weak and bloated still/again and went to sleep. I woke up at 1am and my legs felt thinner. At 3am I woke up again and my legs seems to feel much more normal although my torso and arms were still bloated. I'm thinking that will fade today and tonight which is Valentine's day. I still don't have much appetite, these past few days, due to the "full" feeling. Writing this would not have seemed possible yesterday but today, 2/14, I'm feeling weak still, if I move around much, but I think I'll be able to read and type in the morning as is my usual routine. My face and legs perhaps had the swelling first and have faded to normalcy first while my torso and arms got the water retention last and will take a day or "three" longer.

When I swelled, that area turned red like a sun burn. When it fades some skin peeled like a mild sunburn. I would describe all of this as discomfort rather than pain. It was strong enough to make me think that a 14th dose would break me or worse but it was all weakness and discomfort. My blood pressure sunk that day (to about 80 over 45 if I recollect correctly), even more than the IL-2 had pushed me before (to about 95 over 50) so the doctors agreed that I should stop or I might end up in critical care. They had put me right across from the nurse's station for critical care so that nursing help was always close. The nursing staff was pretty amazing and helpful at all times.


Julia, Debbie and Dane were big helps during the day while Cheri spent every night in the recliner there. They all did whatever was needed and were very generous. So many people have offered to help...it's amazing. Nancy and Kristi stayed at our house with the kids for all the time that Cheri was helping me. It seems that generosity, kindness and the resilience of other patients are normal in family and friends. It is very heartening. While the medication has pointed out physical limits to me, people helping are beyond what I would have hoped or expected.

I have no idea how someone in worse shape than me could survive this. I'm guessing that I was the only IL-2 patient there but how people cope is beyond me. Sleeping is interrupted constantly. There are boring times in the day but there are so many things going on that sleep tends not to last beyond an hour. They have to take vital signs (blood pressure, pulse and oxygenization) every 2 hours. They weigh you. They take blood. They clean the room. They give you pills or injections into your IV feed. They question you. There are other things that I am no recalling and so sleep is so deprived. Then there is using the bathroom. You are weak and wearing a gown that you can't take off without having to re-snap in the heart monitor wires to your chest sensors or re-snap the somewhat complicated gown snaps that allow you to get past your IV tubes. You have to drag your mobile IV unit to the restroom after unplugging it from wall plugs about at the height of my shoulders. I had to measure the liquid that went into a couple plastic appliances that they supplied (which I could choose from). So you are weak, holding up a folded gown and needing a couple more arms. Nurse will help if you ask but that is hard for me to request. It is so tedious but necessary. And very tiring.