Thursday, April 21, 2016

Adriamycin + Cytoxan

I did it! I completed my first set of chemo on March 3rd, 4 rounds of Adriamycin and Cytoxan. These 2 drugs were given to me to shrink my cancer tumors systemically which they did. My first infusion was on January 22nd and I've had an infusion every other week. I learned I needed those two weeks for my body to recover from each infusion. 

I was so excited and giddy for my first experience with chemotherapy. Matt was by my side. I had no idea what to expect, I was just excited to be in there and doing something that I knew would get rid of my cancer. I wasn't nervous or scared, I was all smiles!
The Huntsman Cancer Institution has a large Infusion wing. There are 8 pods with 4 available chairs in each pod. All these pods face the same wall that's actually all window overlooking the city.

My nurse went into great detail explaining things to me, like what she was doing and why. After telling her about my diagnosis she said that I'd get through this because I am young and smart :)

I know that chemotherapy affects people differently. First of all, there are hundreds of different chemo drugs for different kinds of cancer. And even if I was on the same chemo as someone else, the side-effects wouldn't be exactly the same. Some chemos don't work for some people (tumors can still grow during chemo) and other people may get too sick to continue those chemo drugs. My doctor listed all the side effects I would have from adriamycin and cytoxan, but told me they'd vary in intensity. Talk about anticipation! Since we didn't know how I'd react to this chemo, my doctor had me on 3 anti-nausea drugs before getting my chemo in case my body reacted badly. My nurse said the worst for nausea/vomiting are usually young premenopausal women in their "child-bearing" years (like me!) and the easiest on old men.

Since I'm so young and healthy (ha!) they gave me the biggest dose of the adriamycin any healthy person can handle. It was a lot. I HATE this stuff. Just thinking/looking at it makes my stomach sick.
You can see that "the red devil" is in a push needle. Did you know if you receive this chemo too fast you could...die? It is so strong and hard on your heart/veins that the nurse sits next to me and slowly pushes it through my port. Every so often (like 30 seconds) she'd draw back to see if she can get a good blood return. This whole thing took only 20 minutes, but I could feel it enter my body and it was not a good feeling. One of the many side effects of "the red devil" are mouth sores so while receiving this chemo I chewed ice. The cold prevents the drug from traveling to the mouth therefore relieving you from the sores. Cytoxan was less dramatic and given to me through a drip.

That first chemo wiped me out. My body wasn't used to medicine this toxic.  I slept the last hour, the entire drive home, crashed on my bed, and slept for EIGHTEEN straight hours. Never in my life have I slept that long. 
So what does chemotherapy feel like? How did I react? What were my side effects?

1. Hair loss- days after my second infusion my hair started falling out by the handful (I plan to write a separate blog post about going bald). Losing your hair from chemo isn't like how it's portrayed in the movies. It's not a simple shave and then...boom....shiny bald! My scalp felt like someone was pulling my hair! It hurt really bad. Even once the hair was all gone...all shaved off, my scalp felt like someone was tugging at it. I noticed I'd just put my hands flat on my had and push down. Wearing a beanie or scarf really felt good on my head, it relieved some pressure that I felt. So not only the hair on my head, but the rest of my body was hairless too. The only hair that stayed were my arm hairs and my eyebrows and eyelashes (My nurse said it was 50/50 and I guess I got lucky). It was very nice not to have to shave my legs for months. And once the hair was gone it did not grow back. Absolutely no hair growth.

2. Mouth sores- I got lucky and only experienced this mildly. My nurse told me that if I am prone to cold sores than I'd most likely get these mouth sores. I've never had a cold sore in my life so I was optimistic! These sores can be all inside the mouth and even down into the throat. Yikes! I brushed my teeth and bought a special mouth wash I used after I ate. I kept my mouth clean and it worked! I did have a few mouth sores during these treatments, but it hardly affected me. It felt like a scratch, but it would usually be gone the next day.

3. Nausea/vomiting- I didn't throw up at all. I felt nauseated like I did in my first trimester of pregnancy where I had to only eat certain foods and then drink lots of water. My nurse told me that their goal was to have me up and going everyday and if I was laying by the toilet then that was wrong. She told me chemo shouldn't be how it's portrayed in the movies. I shouldn't be throwing up at all. I was prescribed some anti-nausea medicines the days following each chemo and I think those helped me. Once those days were up then I felt more of the side-effects like nausea. The nausea really wasn't so bad! Maybe because I was used to it from pregnancy? I was just happy I didn't have to throw up and that I could mostly eat normally. One of those prescribed medicines was a steroid which I felt had worse side effects than my chemo! Nausea was cumulative so by my last AC chemo it was definitely at its worse. But I'm happy I got through all 4 of these AC infusions without a lot of nausea/vomiting which I think is a side-effect most people think of when they hear chemotherapy.

4. Fatigue- I think this was the side effect I hated the most. These drugs did a number on my energy levels and my brain! I had two weeks between treatments and that first week I was good for nothing. I think it was on days 3-6 where I sometimes couldn't get out of bed. And if I did get out of bed I could only really take a shower and then I was so exhausted. If I did get downstairs I was there to stay because walking upstairs was an ordeal. Do you know how that feels? It's one of the worst feelings in the world. I told Matt I felt all "sludge-y". Those days 3-6 after each chemo also affected my brain! I couldn't think, read, write, or even have conversations (ones that I remember anyway). I was foggy and loopy. I had a hard time looking people in the eye and listening and thinking. I remember my mom, who was there helping my family, showing me a grocery list and asking me if that was good or if there was anything I wanted to add and I could not read it. I couldn't think, it was so weird and awful. Anyways, once that first week was up, I got more of myself and my energy back each day. I almost felt completely myself again the day before the next infusion. Talk about mind games! I think that's why this side-effect was the hardest for me. I hardly knew what to expect the next day and we'd have to change or move around our plans. It's so strange how one day I couldn't get out of bed and then a few days later I could go for a mile walk around the neighborhood with my kids, do laundry, make dinner, etc.

5. Neuropathy- This was a side-effect I was not expecting. Here's a funny story: On one of those "in bed" days after chemo, I wanted a specific healthy meal that I'd often make for myself. I knew I couldn't make it downstairs to cook it so I asked Matt to bring up two zucchinis and a pepper and a cutting board and knife-I was going to do some prepping right there in my bed! As I was peeling the zucchini, I noticed my hands feeling uncoordinated. I had to think really hard what I was doing or I was afraid I would hurt myself, especially when I started chopping. I had to go so slow and be super careful. This was the first time I noticed the numbing in my fingers. The second time I was buttoning up my son Andrew's shirt for church. It was extra hard. It was frustrating, I did not expect this symptom. Then I noticed when I was washing Violet's bottle and the hot water felt weird on my hands. These symptoms occurred after my third infusion so I told my doctor before my fourth one. He broke a stick in half so it was pointy and poked my fingers (didn't hurt) and then poked my palm in the same manner (it hurt really bad). Yikes, I had no idea the numbing was that bad. My doctor did the same to my feet, my toes were also numb. So during my 4th infusion I iced my wrists and ankles during "the red devil" so it would prevent more numbing. It didn't work very well because those next few weeks I felt the symptoms worsen. The very tips of my fingers felt "shrivel-y" like they do when you're in water too long and some of the skin on my finger tips started to peel. I told Matt the only way to describe it is when you get a burn on your skin and then the skin starts to peel off. It's that same sensation, without the pain and more numbing. "The red devil" also made some of my fingernails turn black as they started to grow out.

6. Low White Blood Cell Count- Chemo does a number on your good cells as well as knocking out those bad cancer cells. Having a very low white blood cell count means you have no immune system. I was really worried about this side effect because I have little kids that are involved with friends and preschool and church and other things where there are lots of germs germs germs. I asked if I should keep them all home and my doctor and nurse said no! Go on with life as usual-go to a movie, go out to dinner, go grocery shopping, keep your kids in preschool, etc. Obviously be mindful of keeping away from sick people and always wash your hands, especially before eating (things we were doing anyways). I felt good about this. I wanted to keep our life as "normal" or routine as it was before. Lucky for me my WBCs were high with these treatments. Want to know how? Neulasta.
Towards the end of each infusion my nurse attached this device to my arm. It sets itself to give me a shot in 28 hours. This is for convenience so I wouldn't have to go back to the cancer institution the day after chemo for a shot. This is the future! It was pretty cool how this worked. As you can see from the photo it shows the device as full. There was a green light that would blink about every ten seconds. Then after 28 hours it would beep and then blink a green light really fast. I could feel the shot being inserted into my arm and it took...30 minutes? for it to reach empty. Then the light would turn red and I could just peel it off and throw it away. Neulasta stimulates bone marrow to create more white blood cells. My WBC count went pretty high during chemo because of this shot. However, this gave me lots of aches and pains (because of the bone marrow). I was able to figure out how to combat those side effects, I was just glad this worked well for me. 

Wow, that was a lot of detailed information. I would sum it up and say that physically, it was not as hard as I thought it was going to be. Nurses complimented me and said I look great "considering" I was on these specific chemo drugs, so that made me feel good :)

These family photos we took before church were days after my first infusion and I remember only being able to hold Violet here for about 15 seconds. I'm learning to find any sunshine moment and document it. Staying positive and getting myself distracted with my cute kids was a great help during chemo.

Before each chemo, I visit with my nurse practitioner and doctor where we talk about side-effects and look over my blood work from that morning. My doctor also gives me a physical exam. Before my second chemo I told them I slept so long from the pre-meds (one of them "may cause drowsiness") so we cut that dose in half for my second infusion. My parents sat with me during this chemo, it was good to visit and have them see where I've been going and what I've been doing. My parents were the ones watching my kids and taking care of my home during the many days I've spent at the cancer institution (thanks mom and dad!). Before this chemo I cut my hair short, knowing it would fall out in a few days.
Matt came with me to my third chemo and we got lucky and got our very own room! I guess this happens by chance, it was nice to have more privacy and we even turned down the lights and took a nap.
My cousin Kelly came from California to spend a week with me and my family! She got to take me to my 4th and final AC treatment. We love you Kelly! This last chemo was the hardest on me, I know why my doctor stopped me at 4. It really wiped me out and made me look how I felt- sick.
Here's me with no makeup before and after 4 rounds of chemo. Bald and big dark circles under my eyes. Tired, but still happy :)
I haven't gotten scans yet, but just from my doctor's physical exam, we can tell the tumors have shrunk a lot. We don't know what's going on in my liver (until I get scanned again), but my blood work shows that everything in my body is working great. I had an echocardiogram before chemo and after chemo (adriamycin really damages the heart) and everything looked great still. The only positive to getting cancer so young is that my body is strong enough to accept all the drugs to fight off the cancer (although I'll have many long term side effects from chemo).

Being a mom can never be put on hold, even during cancer treatments. My kids are thriving and growing, time does not stand still! I took any good day or even a good moment when I felt well enough and spent it with my kids and Matt. I tried to take advantage of my sick days by reading or writing in my journal or making family photo albums (that has been on my to-do list for years, it's so hard to keep up!) but if I felt well I was taking care of my kids or hanging out with Matt. I'm a mom that enjoys her kids and never feel like I need a break from them. I like them to participate in my life as much as I enjoy watching them in their own little lives. So yes, it is hard being sick and not being the mom I want to be - or used to be. I know I'll get there again, and I fake it and try to take over as best as I can :)

The weekend after my last AC treatment, we went to the Aerospace Museum as a family.  We enjoy doing things as a family and spending a nice afternoon at a museum is something we would frequently do. We haven't done this since before I was diagnosed so you can imagine how nice and normal it felt to be a family. I love my little family and our little day outings together.

There is no way I could have gotten through these tough treatments without the support from my family and friends. I am grateful I have such a strong support system: Matt, my parents who drove or flew up for each treatment, my sister Lindsay, my sister-in-law Becky, my friends and neighbors who brought dinner over or watched my boys so Matt could work from home in peace (ha!). I'm grateful for every encouraging word and every prayer and good thought that has come our way.