Monday, October 28, 2013

Crazy Xeloda Cycles

It is really interesting to see how each Xeloda cycle is different. I would have thought that there would be some type of pattern, predictability, or consistency to all of this, but there isn't. I've had nauseous cycles. I've had fatigued cycles. I've had not-so-bad cycles. I've had half-and-half cycles. I've had I-think-I-can-do-this cycles. And oh-no-it's-back-to-the-beginning cycles.

This cycle started off ok, but it has progressively made me want to spit. I just want to get rid of this yucky taste in my mouth. The only time I can spit is in the shower. Then, I spit, spit, spit. Thought of a spittoon, but that grosses me out. Ugh!

Last Friday, I thought that I might throw up for the first time. The feeling in my stomach and certain smells just overwhelmed me. This queasiness, yuckiness (is that a word?) followed me throughout Saturday. I tried walking, thinking that some exercise would help. Unfortunately, it didn't.

The thought of throwing up is very scary to me. Too many toxic chemicals. So I tried to preoccupy myself with other thoughts.

The rest of my week?

My oldest, A1, had a cold last week. His nose was runny and he was sneezing up a storm.

Now, my youngest, A3 has a bad cold, cough, fever, and some asthma as a result. He threw up right before we left for church. We still had to go to church because I am the pastor's wife. Also, a missionary couple that our church supports and whose daughter attended seminary with me visited our church. I had to go. I wanted to see them. So, A3 sat with me in the back.

We can't leave out A2. She got hit by a frisbee, above her eye, on Sunday. Her eye is swollen and a layer of skin got taken out. Who would have thought that a frisbee could do that?

Pray for us.

Tuesday, October 22, 2013

Fourth Cycle of Xeloda

Last week was my ninth week and the "off" week off of the Xeloda. I had more energy, could tolerate most smells (didn't have to open the windows as often), and could eat some Korean foods. It was so wonderful! I felt such freedom to do more things - and I did. There is so much to do around the house and errands to run!

I went to see my oncologist last Thursday. The visits are now every three weeks. The tumor markers in my blood seem to be going down, which is a good thing. This is what I wasn't expecting: Dr. K told me that we should continue with the Xeloda since it seemed to be working. I thought: maybe in a week? But, Dr. K said to start on Saturday.

So, I am on my fourth cycle.

It was really interesting to see the progression of my hand/foot syndrome. It got progressively worse during my off week. Who would have known? Well, my nurse did, and she told me that that is very common for it to get worse during the off week. The bottoms of my feet got redder, my skin starting peeling, and more brown spots formed.

The skin around the nails of my big toes also got a bit infected. Don't know why. They got really red, and I pressed on one side and yellow stuff came out. They kept hurting and any time I bumped my toe it hurt an awful, awful lot! But it was refreshingly, fascinating to see the yellow stuff come out. Just saying. I've been putting an ointment on it, and it seems to be getting better.

Another thing to be thankful for: it is colder and I don't have to expose my bare feet anywhere!

Because of the medication, I was told not to use a pumice stone on my feet. When those first brown spots started appearing on my feet, I began slathering lanolin on my feet (morning and night) and putting socks on. It helped to keep my feet smooth, despite not using a pumice stone. But, the Xeloda is building up in my body and is now wreaking havoc on my feet. The lanolin used to make such a difference, but now the skin rubbing off when I walk or wear shoes can't be helped.

My hands are also super dry. The tips of my fingers scratch smooth surfaces when I touch them. I hate that feeling. When you look closely at my hands, they ain't so pretty. I've been slathering lanolin on my hands before going to bed and putting socks over them. I look very interesting before I go to bed.

This is my new reality, and I am trying to keep flexible and adjust. When it comes down to it, I am thankful for the Xeloda. Because I am able to take the Xeloda, I don't have to go through intravenous chemotherapy. That is a good thing.

I can also be thankful for this cancer because it has brought me closer to Jesus.

by OneThingAdventure

Today, I am going in for a CT. Please keep my in your prayers.

Tuesday, October 15, 2013

Three Cycles of Xeloda

I was trying to write but I couldn't. Couldn't think. I would get an idea to write and then forget it. I would try to write and then the words would slip away. I cannot tell you how many things I forgot last week. My family knows... You might know but not realize that I forgot.

I took my last three pills of Xeloda at 6:40 pm Friday. Yay!!! So thankful to Jesus for helping me through. Still feel like a baby for not being tougher, especially to those who have had intravenous chemotherapy...

After three cycles of Xeloda:
  • my hands have turned dry and brown
  • the tips of my fingers hurt even to button something
  • I've gained 4+ pounds
  • my face has spotted and turned darker
  • there are sores on my feet that hurt when I walk
  • had extreme food smell, anything smell sensitivity
  • could not eat a lot of foods, but could eat what I could eat (make sense?)
  • don't even want to attempt any type of mathematical equations
  • forgot many things, even when I wrote them down
  • can't think
  • had some major hot flashes
  • had less hair loss than when taking Letrozole (Femara) 
I finally gave in and took Prilosec. It helped so much! It cut the acid in my stomach and the burning in the back of my throat. I took it every day before taking the Xeloda in the morning. So thankful that it worked and I didn't have to take that antipsychotic medication!

Each morning I would wake up, take my Levothyroxine (thyroid meds), wait 40 minutes (you're not supposed to eat food until at least 30+ minutes after taking Levothyroxine), take Prilosec (supposed to take this on an empty stomach), eat a hearty breakfast, take 3 Xeloda (have to take this within 30 minutes of eating or you have to eat again), wait 3+ hours (had to do this because of my thyroid meds), take my first round of vitamins, wait 4 hours and take my second round of vitamins, eat dinner, take 3 more Xeloda, and take my last round of vitamins before going to bed. As you can see, this took a lot of concentration, on my part.

During my time taking Xeloda, I had to add B6 vitamins (300 mg) to my pile of pills. (Take the pills not the capsules because the capsules have a strong taste to them). B6 (not the B-complex) is supposed to help with the hand/foot syndrome. Normally, I took it during the two weeks of taking the drug and would stop during the off time. This last cycle, I realized that I should have taken it for, maybe, two or three more days after getting off the drug. At the end of the two week cycle, the meds have built up in your body and the hand/foot pain is its strongest. Taking the B6 makes a big difference in curbing the intensity of the drugs. I felt it, those days that I forgot to take it.

You might be asking yourself: why does she write all this stuff? Well, I'm hoping that it will help someone who is starting Xeloda. It helps to know. I searched for blogs of people taking Xeloda when I was about to start taking it. There is some comfort in knowing what to expect.

This Thursday, I have an appointment with my oncologist. I believe that she might order another CT scan. Then, we will go from there. Maybe continue with the Xeloda? Go back to the Letrozole (Femara) - my hormone medication? Don't know because I forgot to ask the last two times I saw her. I really need to write these questions down and safety pin them to my shirt.

Wednesday, October 2, 2013

Another Weird Thing

I'm taking chemo drugs and I'm gaining weight. Who would have known? I'm getting some squishy wishy rolls on my tummy, as my third, A3 pointed out. My pants are getting tight. I feel like my face is getting bigger. It doesn't help that this 7 year old in my house keeps squishing my squishy wishy tummy. Someone make him stop!

One thing I realized was that I have not been eating as healthy during my chemo. I went on survival mode and ate whatever would go down. I've been eating a lot of things that you should eat in moderation: white rice, white sugar, and white flour products.

I have been stuffing my face with whatever I can stuff my face with so that I won't feel nauseous. There are a lot of foods I can't stand to think about or look at right now, but once I find a food I can take... the stuffing begins. I've gone through red meat week, soba noodles week, I can't remember what I ate week, caramel and cheddar popcorn week, and last week was my cold, white rice with pickles week. Oh yeah, and cake. Yummy to my tummy cake.

Thankfully, I can still drink my husband's green smoothies. They keep me regular and pumped with kale and other nutritious fruits and vegetables.

Here is another weird or shall I say embarrassing thing that happened to me last week. I had to go to the grocery store so I took A3 with me. I have not been fond of my friend, water, during my chemo. Because of this, I had to find something that I could drink. As I tried different drinks, I found that a certain brand of expensive ice tea helps. So I took A3 to the grocery to get some of this ice tea and some other things... okay, I confess, pumpkin donuts. I love pumpkin donuts.

Anyways, as we're walking in the very crowded store, A3 says, "Mom, can we get naked?" I was like, "What?!??!!!!!!!" But, before the words could come out, it registered in my mind that he meant the drink brand (juice drink). I could see that some people heard. You see, A3 takes after my husband: loud voice. This was definitely one of those mommy moments where I wanted to hide in a deep cave or yell out, "YOU MEAN YOU WANT TO GET A NAKED JUICE DRINK?"

My mind wasn't so quick. I just told him to shush and follow me.