Saturday, September 19, 2009

Round 1, Cycle 1 - the haze

I was at this point a tethered woman. I had an IV line from my port infusing me with saline all the time. When I got my IL-2 infusions or any other infusions needed, they would use the second port of my fancy Power Port... very nice. It really didn't bother me at all to have the port; the only inconveniences were feeling it when laying in certain positions, and while the tubing was still connected (short tubing that connects to the IV pump tubing) I would have to have a PCA 'tape me up' to take a shower, to keep water off the port lines. This was accomplished by either using a small bio-hazard/sample bag or a piece of Press and Seal plastic wrap (I kid you not) and medical tape. Fortunately, when no needles are attached to my port, I have no shower restriction. I was also connected to a cardiac telemetry device. Think of having EKG leads attached to you all the time and plugged into either a machine or a portable remote device. The machine sent my cardiac information to the nurses' station continuously, via a funky antenna on my ceiling. This was no big deal either, EXCEPT that sweaty me would cause leads to fall off, which would then cause the machine to beep until I or a staff member fixed them. Also, they had to be removed for me to shower, so between the telemetry and the port lines, I always had to announce my showering intentions ahead of time since I needed help!

We got on a schedule, the staff and I... the nurse and PCA would come in at the appointed hour, and do a number of things, including: giving me an oral dose of acetaminophen and compazine, take vitals, flush my line, start the IL-2 drip, and infuse my line with demerol. I would then try to relax and sleep. During the first 2 hours, vitals were taken every 30 minutes.

Within 90 minutes or so of each infusion, I would need to get up to use the rest room.

Sidetrack here: One of the big side effects of IL-2 is water retention. The patient is being pumped full of fluids, and is encouraged to eat and drink whatever he/she can tolerate. They are also watched like a hawk as to what is 'produced' in the bathroom. To facilitate proper measurement, I had the lovely pleasure of having to pee into a 'hat'. It is a plastic receptacle that sits on the toilet bowl, under the seat, and measures the amount of urine produced. The thing is, there isn't much. I felt the urge to go at appropriate times, but rarely was able to send much to the hat. This was an odd sensation, and meant that I was in fact retaining fluids. It is not unusual for an IL-2 patient to leave the hospital 30 lb heavier, though luckily I was only up about 10 lb. This didn't surprise me since I sweated a great deal pretty much the whole time I was there.

Ok, so back to the routine. I would get up, and of course the air walking across the room is cooler than the air trapped in your blankets, so I would start to feel a chill. By the time I got back to bed, the chills (known as the rigors) would take over my body, so that my teeth chattered, with my jaw tight, and my body shook, especially my legs. I knew to call the nurse right away. I always got someone to attend to me in under 5 minutes, but that 5 minutes felt like hours. The nurse would shoot more demerol into my line and within a few minutes, I would start to feel a heat-like sensation radiate from my torso. Bit by bit, I would stop shaking and feel comfortable again.

I slept a lot, though never in big chunks as far as I know. I dreamed constantly, and they were weird, hallucinogenic dreams. In them, I would be interacting with people from my real life, talking to them though I couldn't get them to respond. I knew that they weren't responding because I was dreaming, but it was still odd. Often I would be holding, touching, grasping things that didn't feel 'right' only to find that I was holding onto my blanket or pillow. Sometimes I would ask questions of people in response to things I had been told when I would hear from family or friends. It was really, really odd, and the odd dreams only really just stopped about 3 nights out from leaving the hospital.

I experienced others of the usual side effects.

- loss of appetite. It went pretty much immediately. I knew that I needed to eat, but just couldn't. Several meal trays went back untouched, and other times I tried to take at least a couple of bites of each part of the meal. Hospital food is what we all expect, and I did learn that next time, I will request no gravy on anything. Since they are trying to keep the food as low-fat and low-sodium as possible, they use a fair amount of pepper especially in gravy. Yuck. On a good day a little pepper goes a long way with me. When I could barely face food, it meant the difference between getting some of the mashed potatoes, which were actually good, and smelling the pepper and putting the lid back on the plate.

- loss of alertness/weakness. The lack of food was not helping this one at all, and was the ultimate reason I stopped at 7 doses. As I got weaker, I couldn't think much, couldn't read, use the notebook that Jim bought me to use there, couldn't carry on a conversation of any length or depth, etc. People left messages on my mobile phone and it was all I could do to listen to them, much less respond to anyone, as sometimes the thought of having to press the required buttons on the phone was too tiring to me.

- diarrhea, which wasn't actually bad, probably because I was eating so little. Everyone asked about it continually though. Early on someone mentioned that they might want me to produce THAT in some kind of 'hat' as well, to check what fluids was I was losing. When I mentioned it to the NP though, she said "oh no". Thank goodness.

Good times.

There is nowhere that I find comfortable to sit for any period of time in the hospital. I think this fuels my desire to leave ASAP whenever I am there. I can only sit/lay in bed for so long; the 'recliner' chair bugs me, the regular chairs bug me, and so on. And I hate trying to type on a keyboard while using the bed tray, so being verbose online while admitted... not possible, luckily for all of you.

An interesting silver lining, though: Since IL-2 causes blood pressure to drop, I didn't need to take my blood pressure medication while in the hospital. Also, my readings were lower than they would be normally on meds but the drop for me from hypertensive to IL-2 land kept me in the normal range. Nice little side benefit.

By seven straight doses, I was mentally and emotionally wrecked. I was ready to leave immediately (or as immediately as possible, considering patients need to be monitored for a day or so after the last infusion), have my port pulled and quit altogether. I talked to my nurse, who recommended I skip the next dose (6 AM) and continue at 2PM. I agreed but felt pretty certain that as soon as I started to feel better, I wouldn't willingly take another dose. Everyone at the hospital was really nice about it, expressing empathy for the roughness of the treatment. I had feared that I would be told I had to keep going, especially if stopping meant I would be leaving the hospital AMA.


Strategies for next time:

Listen to the creative visualization CD that was recommended by kidney-cancer-friend Angelo. I had it with me on the first trip but didn't listen to it until I got home. I enjoyed the imagery she used and plan to listen to it more frequently.

Put up more photos of family, friends, etc. to remind me what is at stake here... my life.

Have someone get me to eat a bit so that my weakness doesn't become my downfall. To that end, my sweet Jim has decided to spend the entire cycle with me at The James next week. The girls will stay with his folks, where they love being, and I will have my sweetie there to keep me strong. I need that a lot... I felt so much relief once I'd verbalized my desire to end my infusions, but felt very guilty/weak later. I know that I HAVE to finish this cycle. And if I am blessed to have a response, I will HAVE to go back for another round (two cycles), likely in December... oh yuck of yucks. The idea of being away during the holiday season is really upsetting. They would make sure I wasn't inpatient on Christmas day, but I would not be able to postpone round 2 until January. Very distressing to the mommy who wants to have fun holiday memories, every year. But after mulling it for a while it finally hit me (I told you they found nothing in that brain MRI!) that if missing one holiday season gives me the good health to be here for many more, who the hell will remember that I wasn't at the holiday program wherever, in 2009?

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