Read Part 1, Part 2, and Part 3 of my walk down Memory Lane in regards to my liver cancer last year.
It was at some point during the second week that the doctors came to us and told us that nothing they were doing was working. My two drains were being emptied multiple times a day, and I began to run fever…again. They were worried that I was getting…I think it was peritonitis? Anyway its where the lining of the abdominal cavity is inflamed and even infected from, in my case, the bile that was leaking. My bile duct was damaged by the cancer, and very little of it was left. The bile was just draining into my abdomen.
They decided to take me off all food and drink. To be fair, I hadn’t been on food yet…one day I was allowed solid food and it promptly made its reappearance so they put me back on a liquid diet. I was losing weight and my health was continually declining, so they made the decision to put in a PIC line that would last “up to a year” since my IV’s kept blowing, and they were going to give me intravenous feeding through said PIC line. The procedure itself went well, and for the first time I wasn’t having to have IV’s placed every 6-24 hours. I didn’t have to get stuck for my twice daily blood tests…they were able to do them through the PIC line. Life was good! I’m having to backtrack a little here, because the PIC line was put in about 4-5 days after my first surgery, but I didn’t mention it in my previous posts.
Taking me off food and drink (although I continued to eat ice…allergies, dry throat, all that stuff) did nothing to alleviate the bile production, so the decision was made to have surgery #2. I cried. I was able to walk and do things by myself for the first time, and now they’re telling me we’re going to start the cycle all over again. I was looking forward to showering by myself…shaving my own legs…and now we were going back to square one.
My PIC line had blown (I’d had it for 6 days) a few days before my second surgery. They were surprised, because PIC lines were supposed to last for up to a year. They replaced the line, this time in my right arm, with a different type of line…they thought maybe I was allergic to the first one. Getting a PIC line isn’t a horrible experience, but it is much worse than getting a regular IV. Its stressful on me, knowing they’re running it almost up to my heart, and I could feel it snaking its way up my arm and into my chest. They stitch the line in place to keep it from pulling out, and that was fun…NOT lol. Still, the pain is all relevant…I really was getting a new IV line every 6-12 hours, and this fixed that, at least temporarily.
In addition, they decided to start some injections three times a day. I forget the name, but they were supposed to promote healing…I believe it was a type of hormone injection. These had to be given in the muscle, and to say they were the most painful injection I’ve ever had is a huge understatement. I had black bruises all over both upper arms from them. I DREADED watching that clock change, knowing the torture that was coming. It got to the point where that time of day would come around, and my mood went downhill rapidly, and when the door opened, I’d get tears in my eyes. I noticed my husband and mother would tear up as well. I took the shots well…I didn’t flinch, I didn’t cry (other than the tears in my eyes), and I was really nice to the nurses about it. I discovered that when the nurses were trying to be gentle and push the shot in slow (it was one of those thick liquids and it BURNED), it hurt the worst. I had one nurse come in and push it fast, and while I hurt like the dickens, it was much better on me than the slow push. From then on I requested they push it fast. I had several who didn’t want to, because they knew how bad it hurt, but they honored my wishes.
I went in for my second surgery on March 23, 2006. I was terrified that I wasn’t going to wake up. I’d been in the hospital over two weeks and had not seen any of my three children. My mother and my mother-in-law were waging a battle of superiority over decision making while my husband was at work (I’d sent him back to work after the first week when it looked like I was going to be there for a while). I was a nervous wreck. I woke up briefly in the recovery room, and was whisked back to my TSU room shortly afterwards. They’d gone through the same incision and I was in a lot of pain. To my dismay, I had to have three units of blood. That put me up to a total of four. By the time the fourth bag was hung, I was no longer crying over it. I figured the damage had been done after the first one.
Things went rapidly downhill after the second surgery. I remember very little of what happened in the days that followed. I know I was pretty sick, and the repair they’d attempted didn’t do what they’d hoped it would…i.e. stop the bile leak. When I woke up from the surgery, I was disoriented even worse than after the first one, and had a “freak out moment” when I couldn’t figure out why my throat hurt so much and I couldn’t figure out the problem with my nose. During the surgery, they decided to put a tube down my nose and into my stomach, to “deflate” my stomach. They didn’t want my stomach to increase bile production. I had to deal with this for three days before I finally convinced them that if they didn’t pull it out, I was going to. My throat was raw from the tube, and my mother-in-law had bought me some chloroseptic spray the first day that helped TREMENDOUSLY, but the pain never went away. My bile production increased to the extent that I had to have a third drain placed in my abdomen, so my thinking was not only was this “experiment” not working, it was making me more miserable in the process.
I wasn’t sleeping at all after the surgery, and they decided to put me on a constant dilaudid drip. I’d been on morphine after my first surgery (I forgot to post about this), and had a night where I couldn’t breathe, my heartbeat became very irregular, my blood pressure went crazy…they had a lot of trouble working on me and realized I was having an allergic reaction to the morphine. I was only hitting my button before I would get up to walk, and then during my walk, and once again when I got back into bed…so maybe 6-8 times total a day. The “episodes” were happening every time during this time frame. I’d never had trouble with morphine in my previous surgeries, but apparently we can develop allergies as we age. The dilaudid however worked fine. It helped me sleep, but my memory loss is probably due to the constant drip I was on.
The second PIC line blew after three days, the day after my second surgery. Radiology didn’t want to place a third one, but I was unable to eat, under doctors’ orders in fact NOT to have ANYTHING, even ice (although I cheated), so they had to try again. They went into my left arm again, and placed the line. I was so “out of it” due to the dilaudid that this one was relatively painless.
The hormone injections were increased to four times a day. Just swell. My arms looked so bad, the nurses tried to convince me to allow them to give the injections in my stomach, since there were fewer nerve endings there. Excuse me?? I have an incision almost all the way across, and three drains, and you want to stick needles in me there? I don’t THINK so! Skipping ahead to my fourth week in the hospital, I finally allowed one of the male nurses to stick me in my back, on the side, just above my kidney. I barely felt it at ALL. From then on, I requested all my injections in my back.
The third (and final) PIC line blew less than 24 hours after it’d been placed. Radiology refused to do another one. They changed my intravenous feeding to allow for a regular IV, and I blew my IV’s every few hours. They were about to try to find a vein in my foot or leg when they found a decent one in my thumb (by far, THE most painful IV I’ve ever had in my LIFE). That one lasted almost 24 hours, but it was long enough.
The fifth day after my surgery, my surgical team came in, and I knew something was up. The hormone injections weren’t working. The medications weren’t working. Everything they’d tried wasn’t working. They were to the point they wanted to send me home under hospice care, with my drains in my abdomen, to wait for “the end.” Excuse me? My lead surgeon said they had one more procedure they could try, that would loop my large intestine up around and attach it directly to my liver, in an attempt to have the bile drain directly into that. There were complications I would experience permanently after the surgery, but we made the decision to go for it, because at that point, what did I have to lose? They had just gotten the IV into my thumb, and were hoping it would last until the surgery. I literally had no more veins available in my arms and hands at that point.
The surgery was scheduled for the following day…six days after my second surgery. It was to be my third major invasive surgery in 23 days. I was very depressed for the first time, and truly terrified. My children were brought to the hospital that day (the day before my third surgery) for the first visit I’d had with them. It was bittersweet. My youngest had no idea what was really going on, but my oldest (10 and 11 at the time) were very subdued and worried. I shocked everyone by insisting they both get up in the bed with me (not at the same time) because I’d let the 3-year-old in the bed with me. It hurt, but it was rewarding too. In fact, my surgeon walked in to check on me at one point, and saw my daughter in bed with me, reading “Matilda” to me because I was desperate for a book but couldn’t focus on words due to all the drugs I was on. He proceeded to talk to Katie as if she were an adult, all about the book she was reading me and other books written by that author. I’ve never seen Katie light up so much, and I decided then and there that no matter what, Dr. Cohen was a hero in my book.
Not only did I beat the odds by having an encapsulated tumor, but also by the sheer size of my tumor. In all of the research I’ve done today when writing this, NO WHERE does it mention a tumor being larger than 9 centimeters. I’m sure there have been larger ones, and larger ones than mine…I just haven’t dug deeply enough into the internet yet to find the documentation. This is the first time I’ve researched this since my hospitalization last year…I was never able to bring myself to dig into it. I keep feeling like I’m nothing special…and then I start to read some of this stuff and all I can think is “THANK you Lord!!! Thank you for my life, and thank you for making it less difficult on me.”
