Part 9: Adventures With Xeloda

After I got back from the trip to Paris and Amsterdam, it was time for me to try the oral Chemotherapy called Xeoloda. My Oncologist wanted to wait for me to return from my trip because of its possible side effects. Taking the oral medication would change my visits to the Oncologist to just once every 3 weeks (instead of every two weeks) for an infusion of just Avastin, which would be 30 minutes, instead of 3 1/2 hours for the previous regiment. The procedure for the pills would be to take 8 pills a day- 4 in the morning and 4 at night, two weeks on the pills and one week off. I was looking forward to it because it meant no more pump (as I’ve said, I hate that thing), fewer trips to the Dr, and less time off work. Up until that point, outside of treatment days and pump removal days where I had to take a half-day off for each, I had only missed work twice until the surgery when I was out for 6 weeks. First the insurance had to approve the oral meds, which they did. Then a pharmacy called me, and I had to answer questions from 3 different people. Once I finished that, the drugs were shipped directly to my house. Very convenient. They came with a bunch of papers and warnings, as well as arriving in a bag with a biochemical hazard logo on it. Part of the cautions was not to let it touch my skin at all. My enthusiasm for the pills slowed a bit right about then.

So I started taking the Xeloda without much of an issue- I was tired but it was endurable. The first two weeks went pretty well with only minor side effects. The problems started after the week off when I was midway through the second round of pills. I started getting mouth sores, and hand and foot syndrome. The mouth sores made it hard to talk and almost impossible to eat. I started living on mac and cheese and mashed potatoes. The “Magic Mouthwash” I had did nothing, and the Lidocaine they gave me worked for a short period of time- sometimes just long enough for me to eat something more substantial. The hand and mouth syndrome consisted of pain in my hands and feet; the skin feels like it’s been pulled too tight over your fingers, and they start to crack and peel. It’s an odd combination of numbness, and pain. That happened to my feet too, it just took longer for them to peel. The nurses suggested using lotion (Udder Butter was the most recommended) to try and alleviate the hand and foot pain. It didn’t work so well.  In addition to having a hard time talking because of the mouth sores, I was limping from the pain in my feet, and my hands hurt so much that tying my shoes was painful. The next side effect is where things really went south.

I want to insert a disclaimer here: the bad reaction I had to Xeloda is an extreme case. There are many people who take it and while they may have side effects (and usually do) they are nowhere near as bad as what I experienced. I also need to explain the difference between the Chemo pills and infusions and how the body absorbs each. In an infusion, the Chemo drugs are injected directly into the bloodstream and dispersed throughout the body to be absorbed through the blood; a very direct method for getting the medication into the bloodstream. The medication is then secreted through the mucus membranes and skin (hence the mouth sores, neuropathy, and itching when I get hot). For the pills the Chemo is absorbed through the body from ingestion. In order to get the same dose of the Chemo from the pills into your bloodstream you have to take 3 times the amount of the drug as in the infusion in order for it to be absorbed into your body. It’s then secreted the same way, but there’s more of it, kicking the side effects into hyper drive.

By the middle of the second week of the second round of taking the pills, it started to hurt when I was urinating. At first my fiancé and I thought it might be a bladder infection so I tried some over the counter AZO to counteract it. That did nothing but turn my urine orange. I went to the Oncologist’s office to pee in a cup and see what was wrong; that was a Monday. Before the test results even came back, on Wednesday at about 5:30 in the morning, my body refused to urinate anymore. Imagine 1,000 razor blades coming out while you’re trying to urinate. Now multiply that by 1,000. The oncologist told me that women who have had this issue have described it as a urinary tract infection on steroids. He told me I had mucositis of the urethra; the secretion of the Xeloda had destroyed the mucus membranes in my urethra, leaving no lining for anything that was going past, and causing the extreme pain. I was then told that I would need to get a catheter inserted to let the mucus membranes regenerate. I was not happy about this. After all, I had had one after surgery which was a not so good experience, and besides, who likes having a catheter? The Oncologist made an appointment for me that morning with a urologist, and my fiancé and I drove over there.

We got to the Urologist’s office where I filled out the usual paperwork and waited what ended up being over an hour. During this time I felt like I had to urinate, but my body was still shut down. After examining me, the Urologist agreed that I would need a catheter. He was getting ready to insert it himself right there in the office, when I asked if I would be sedated for it. He said they normally don’t sedate someone to insert a catheter. I said, I’m in excruciating pain when anything comes through there, and you want to stick something up there while I’m conscious? No thank you. I want to be out for this. He said if I wanted to be sedated I would have to go to the hospital. I said, no problem, I’ll go to the hospital. So the Urologist made me an appointment with his son, who also happened to be a Urologist for later that afternoon/early evening, and we went over to the hospital to get ready for the procedure, and to be there in case the son had an opening earlier.

The hospital is down the road from the Urologist’s office, and right next to the Oncologist’s office. We were told to enter through the Emergency Room, and they would take care of things from there- the Urologist had made arrangements with the hospital. We checked in, and they set me up in a bed, with the usual; IV, blood pressure and pulse monitor, and a lung X-Ray to make sure I was in good enough health for the anesthesia. I explained my situation to the nurse and Dr. that were there, and they too said it was unusual to be sedated for a catheter. I didn’t care. There was no way they were doing it with me conscious. After a while the ER Dr. said that if I were willing, he would sedate me and try it. If it didn’t work we could then wait for the urologist. The difference being that waiting for the urologist would mean being there for another few hours and they would then have to admit me to the hospital- more time and paperwork. This way I could be out of there much quicker- if it worked. He assured me that he’d done them before, so I figured I’d let him take a shot.

They got everyone together- a Dr, 2 nurses, and of course my fiancé was there as well. Nothing like having an audience for getting a catheter inserted. The nurse came over and injected something into my IV. I asked if that was the sedation (I didn’t feel anything happening), and she said “Yes, and this is to flush the IV.” My fiancé told me after that as soon as she said that my eyes rolled back in my head and I was out. When I awoke, about 5 minutes later, I had a catheter in me, and a tube that ran from my penis to a bag strapped to my leg where the urine would gather. I had to empty that a few times a day.

A short time after that we were on our way home. I had an appointment with the urologist to remove the catheter the following Monday. Those 5 days were some of the longest I’ve had since my diagnosis. I spent most of them on the couch trying to get into a comfortable position and staying there once I found it. Any little movement caused the catheter to shift and become painful. Our cat likes to use me as her favorite piece of furniture- she lies on my chest an nuzzles my beard- especially when I’m not feeling well, but I couldn’t have her jumping up on me, so I spent the time with a pillow on me as well. Before I left the hospital they gave me a tube of Lidocaine to apply to where the catheter entered me to help with the pain, and I used that quite a bit. One consequence of that, is sometimes the Lidocaine dried and stuck to the shorts I was wearing, and when I needed to do something it would pull- not a pleasant experience. I also used oral pain meds I had been given previously and Xanax to try and keep my head about me.

Monday finally came, and we went back to the Urologist’s office to have the catheter removed. When I got there, the Urologist informed me that he wouldn’t be removing it himself, but his two nurses would. This threw me for a bit. Not only had I had a bad experience in the hospital the first time I had a catheter removed, but I had been in so much pain this time that I wanted the Dr. to do it. I was told the nurses always did it. There was not enough insisting in the world that would have changed anything about that. It took me a good 30 minutes to gird up my courage to let the nurses remove it- even with my fiancé holding my hand I was scared. And it did hurt coming out- though it came out mercifully fast. I was then sent home, and told to come back in the afternoon- they wanted to make sure everything was working as it should. So I went home and waited to urinate again, afraid of what that would bring. The psychological impact of the pain, and anticipation of it still being there was still looming large. Eventually I had to go, and it still took me a while to let it happen. When I finally urinated it did it hurt a little, as they said it would from having the catheter in there for so long, but thankfully it was nowhere near what it was before. I returned to the Dr. in the afternoon, and told him it was better, and from there things slowly got back to normal physically. It was a highly traumatizing experience. The next week it was back to the old regiment of Chemo infusions every two weeks and the pump for 2 days after that, which all of a sudden didn’t seem so bad.