Hospitalization & God's Perfect Timing

After I finished my meds from the 2nd cycle of Xeloda, I fully expected to feel crummy for a few days. Sure enough, I started to feel crummy. I would compare my symptoms to others that were in a Xeloda group I had joined on FB. It confirmed my symptoms and timing. It was very common to feel worse on the off week because you now have 2 weeks of meds that have built up in your system that are wreaking havoc. The three most common side effects of Xeloda are Hand Foot Syndrome, tiredness, and diarrhea. I had all three. Each day I kept thinking, “Tomorrow I should start feeling better.” I spent the weekend on the coach, barely moving, barely eating, and barely drinking. It’s easy to think, “Oh, I’ll just force myself to eat or drink.” Yeah, good luck with that. I look up my symptoms/side effects and see it’s nothing unexpected. Unpleasant, yes, unexpected, not so much. Just for your own reference, here’s a list of SOME of the Xeloda side effects from WebMD.

“Nausea, vomiting, loss of appetite, constipation, tiredness, weakness, headache, dizziness, trouble sleeping, or changes in taste may occur. Nausea and vomiting can be severe. In some cases, your doctor may prescribe medication to prevent or relieve nausea and vomiting.”

Up to that point, I’d had all of those side effects over the weekend except for vomiting. Monday morning I just felt a little different, so I randomly decided to take my temperature, and bingo, 102+ temp here I go. Who knows if I had a temp over the weekend. I called the doctor with my list of issues. Random fact, apparently I can’t video chat with my doctor because we are in different states. I practically live on the state line, I feel this is a bit ridiculous, but what do I know? Anyway, the doctor wants me to get blood work at a local hospital to make sure it isn’t something serious. A friend took me for the bloodwork, which came back okay. I was told to update them in the morning with how I was doing. I sent a message in mychart in the morning with my symptoms. I added vomiting to the list, plus everything else I’d been documenting. The nurse called and her exact words when I answered were, “Oh Crystal, you’re a trainwreck.” Oddly enough, it made me feel better. It justified to me that something was definitely going on, and it wasn’t just something I needed to suffer through. They moved my 3:30 appt up to 1:30 so that I could get fluids after the appointment before infusion closed for the day. 

Once at the doctors office, a repeat of bloodwork still didn’t show anything concerning. She laid out 2 options. Option 1 - Go down to infusion, get some fluids, and if that’s all it took, we were good to go. If it didn’t work, I’d go to the ER. Option 2 - Go to ER where they can give me fluids, do an infectious blood workup, and I don’t have to worry about them closing. I can be down there as long as needed. The doctor really wanted option 2, and I knew that was the option I needed to go with. They asked me if I wanted to walk out and we drive around to the ER or if I wanted to go in the wheelchair. I had no interest in walking any farther than I had to. I’m not that proud. I was exhausted and didn’t care. I took the wheelchair ride while Brad drove around to meet us. 

It took about 30 minutes to get into the ER, but they hooked me up with a lot of fluids, IV antibiotics, bloodwork, warm blankets, and a really comfy gurney. The biggest concern was figuring out what was causing the fever. Deciding which of my symptoms were actually from the Xeloda, and which ones were being caused by something else. At one point I couldn’t stop shaking and shivering. I figured this was due in part to not being used to the air conditioning, plus they were pushing fluids into me about as fast as they could. I got a few more warm blankets and then slept a little while. Then I got really warm for a while. They decided to admit me because they knew something else was going on, with the fever, chills, sweats and everything else. 

I was certainly feeling better after the fluids, but there was no doubt that I was not great. After a long night of being woken up frequently to take meds and check vitals, results came back in the morning that I had C-Diff, something I’m pretty familiar with from working in the hospital. It’s a bacteria that hangs out in your intestines. It is contagious, but only through your 💩, so you do the math on that one. The vast majority of people that come down with it, get it as a result of being on antibiotics. I was on massive doses of clindamycin for quite a while. I made sure to eat plenty of yogurt while on it, but it wasn't enough. Clindamycin will basically wipe out all the good bacteria in your gut, leaving other bad bacteria to take over, which is what happened in my case. So, we now had an answer to the fever, and we had an antidote. An expensive little pill that is pretty much only used to treat C-Diff. 

The great thing about staying in the hospital is that there is a great selection of food, even if I did pick at it. I got to order lots of fruit, which made me happy. The downside is the mattress I had was the most uncomfy thing. It had a packed down, off center, depression in the middle of the mattress that couldn’t be avoided. I couldn’t hardly sleep there. It was partly because of the mattress and my room couldn’t be made dark, but I swear one of the meds was messing with my sleep/visions every time I closed my eyes to sleep. I also got a room with no bathroom. Go figure. Let’s put the c-diff patient in a room with no restroom so she has to use the commode. I didn’t even know patient rooms without bathrooms existed in the developed world. 1st world problems I guess. 

Funny thing about the symptoms of c-diff, they are mostly the same as the side effects of Xeloda: severe diarrhea, fever, stomach tenderness or pain, loss of appetite, nausea. The only symptom I didn’t have was stomach tenderness. Which is why my oncologist ordered the c-diff test right away, but we had to wait for results. 

My blood cultures have all come back negative, so that also tells us it was only the c-diff causing all the problems. After being admitted Tuesday night, I got to come home Thursday. I lost about 12 pounds throughout this ordeal. But I consider that my chemo weight that I had gained since September. I’m not eager to gain those 12 pounds back. I’m actually closer to what I weighed a year ago, so I’ll take that. I’m slowly getting my appetite back. I’m drinking some Ensure Clear drinks the nutritionists recommended that are pretty good. I’m picking food that is easy on the gut and protein that is easily digested. 

Throughout this whole process of being sick and admitted I just kept thanking God for his timing. This could have happened during the school year, but it didn’t. It could have happened on the weekend I went to visit my Grandfather in TN who isn’t doing well, but it didn’t. It could have happened while camping, which is scheduled here shortly, but it didn’t. It could have happened when the family was gathering at Pokagon this year, but it didn’t. I’m so thankful for God’s timing. It just reminds me again that He is in control. Whatever may happen, and whenever it happens, His hand is in it one way or another, in ways you may or may not ever see.  We just have to trust in Him. Even when it’s hard. Even when it’s not what we want. Even if it breaks our heart. After all, this world is just a temporary home. The next one is going to be so much better. 

Hand Foot Syndrome

Oh the lovely side effects of Xeloda. I had been hoping and assuming that since my experience with the other 3 chemos hadn’t been that bad (granted, I was still miserable, but compared to others, I lucked out) that I would breeze through this one as well with minimum issues and nothing that serious. No such luck this time. 

Xeloda is given in what they call cycles. It’s also one that is used for select cancers. As far as breast cancer goes, Triple Negative is the only one it helps. I’m taking it because even though margins and lymph nodes were clear, there was still some tumor left. That means the ACT didn’t kill all the cancer cells in the tumor, and in case any cancer cells escaped during surgery or traveled somewhere, this will hopefully kill them. You take Xeloda for two weeks, then you’re off for a week to let your body heal. Side effects tend to pile up towards the end of the two weeks on, so that the week off, you may be pretty miserable. My first cycle on it wasn’t too bad. As I was ending the 2 weeks on, I got pretty tired, my hands and feet hurt some, and I had some diarrhea. All VERY common with this chemo drug. It all cleared up in a few days, and I was back to normal. I had plans to start up my Xbox workout. I figured that if I couldn’t walk the treadmill, I could at least workout on my mat and do my Yoga and Cross fit.

Then I started the 2nd cycle. Yes, this statement deserves it’s own special little paragraph.

Cycle 2 did not go as smoothly as the 1st. Within days of starting on the meds, my hands and feet started hurting again. My fingers were swelling, they were turning red, dark red, almost purple, and they were getting warm. By the end of the 2 weeks on the meds, the diarrhea had returned, the surface of my fingers were becoming numb as the outer skin was dying, and the tissue underneath was hot and hurting. I couldn't button my blue jeans, I couldn’t hardly write or pick fuzz off my shirt,, brushing my teeth hurt, using silverware hurt, walking hurt. Anything you can think of that involves using your hands or feet, it hurts. It wasn’t fun. It was annoying. I started developing all sorts of tricks. Use the handle of a knife to seal zip-lock bags, use needle-nose pliers to get into individually packaged pills and peel wrappers off things like yogurt, use a 3rd grader to open a bottle of water, those kinds of things. I was not above asking for help from anyone. My doc and I are still baffled by the fact that I had to stop wearing my fitbit, because even where the wristband set on my wrist, it was doing funky things to my skin. Needless to say, I’ve been using lots of lotion and I’ve used up almost an entire tin of Bag Balm putting it on my hands and feet at night. 

Currently, I’ve taken an extra week off of Xeloda to allow myself to heal and I will be starting back up at a lower dose. So on my second week off the meds, the skin is peeling off my hands like a snake. This isn’t just the one of 2 layers of skin you may lose after a sunburn. I’m pretty sure this is all 7 layers. I can’t open my phone with my fingerprint anymore because I don’t have enough of a fingerprint left after the skin peeled off. Really glad that this wasn’t the year I needed to get a background check for school, lol. I’m constantly peeling skin off my fingers. They feel extra tender, so I still have to use all my opening hacks on bottles and such. Waiting for my feet to start peeling next. I’ll be testing my flexibility when that happens.  

Finishing the School Year

I returned to school in early March, 3 weeks after my surgery. It was wonderful to get out of the house and distract myself from sitting at home with my own thoughts. I’m an introvert by nature, and have no problem being by myself, but this has been different. It’s not like I’d been perfectly healthy and able to catch-up on everything around and house and just relax. Unless you’ve been through chemo, you don’t understand the physical and mental toll it takes on you, being stuck at home and not able to do stuff. I either didn’t have the energy to do all the things I would have liked, or I didn't have the mental capacity to handle it, literally. A nurse who accessed my port recently, who has been around for a while, mentioned that for years patients would tell them that their brains just felt foggy, but doctors brushed it off and said it was nothing. Now they know it’s not just nothing, and it has a name, Chemo Brain.

I had asked if my long term sub could stay for a few days when I returned so we could transition teaching back to me. To my surprise, they kept her on for 3 weeks. There were several reasons behind the decision, but I feel that the biggest reason was one that God has his hand in it. The very outside end of my incision on both sides were not healing as fast as they should have been. So 3 days before spring break, I had to go in for a follow up procedure on the right side (the left healed on it’s on). God knew this was coming, and it’s why he kept the sub with me. She was able to take back over for those 3 days, and no one had to worry about anything. The doctor went in, checked for infection, cut out the tissue that wasn’t healing, and stitched together new, healthy tissue. It healed like a charm, 

I closed out the year dealing with some rather unpleasant side effects of Hand Foot Syndrome. But 3rd graders are always willing to help, so I gave all my little munchkins jobs to do in my classroom so that I had to do very little to get it ready for summer. 

My hair is growing back, but I don't have many pictures. I'm a minimalist when it comes to appearance. It's one of the reasons the whole wig thing just didn't appeal to me. We buzzed my head before surgery in February, then I had the back and sides buzzed again in May. My next appointment is tomorrow. I plan to try to crazy styles as it grows out. This is one of the few that I have. Oh, and my heart shaped white spot came back!