An Update: Halfway through Taxol

I started this blog knowing I wouldn't be very diligent with updates (sorry guys!). During my chemo experience I've learned that when I feel sick I stay asleep in bed and when I feel well, I like to spend time with my family and do something. Sitting and writing about cancer isn't how I want to fill my time mostly because that's what I'm constantly thinking about. I know it's important to update family and friends, so now that I feel a bit better I thought I'd update you how things are going as of today.

---TREATMENT---

I am on three new drugs I started on March 17th called Taxol, Herceptin, and Perjeta (THP).  I have Taxol once a week for 12 weeks and I have Herceptin and Perjeta once every three weeks. I've been going to the cancer institution every week, sometimes just for Taxol and other times for all three. I'm feeling a lot different than I did on my previous chemo. Tomorrow I receive #8 of the 12 Taxol doses. Knowing I only have 5 more chemos left makes me feel pretty good, see, I don't like Taxol very much...nope. Also, after those 6 weeks my hair will start to grow back. That is probably the strangest thing for me to think about.

---SIDE EFFECTS---

Now that I've had 7 Taxol infusions, I feel as if I know its effect on my body.  I know what's "normal".

Tingling/itchy hands and feet
nose bleeds
extreme fatigue
no appetite
dry skin
what looks like "age spots" on my face, arms, and legs
my fingernails and toenails are becoming more sensitive (hoping they don't fall off!)
muscle aches
arthritis

Taxol's side effects are pretty harsh, so my doctor has me on a lower dose weekly schedule versus a higher dose every three weeks. As exhausting as it's been going each week, I'm glad we are doing it this way because side effects of this treatment can be worse than the cancer itself. Since I've only ever gotten Herceptin and Perjecta with Taxol, I'm not exactly sure which drug causes which side effects, but getting Taxol weekly is draining me of all my energy. When I say extreme fatigue I mean it. 10 hours of sleep is not even enough to keep me from yawning all day. 10 hours! Can you imagine?  If I wake up sooner than that then I just feel more sick - nauseated and exhausted. And I wish a nap would give me more energy, nothing helps with that...even exercise and eating the right foods. I can last an hour or so before I need to rest. Blah!

I am educating myself on what kinds of foods are best to eat if you are going through chemo or just have cancer in general. Sometimes I feel like I'm in school again, I love checking books out of the Hunstman Learning Center ;) I would love to share in another post about what I've learned about food and cancer. Since I have zero appetite (I feel like I'm full and I get nervous to eat "just to eat" because I hate feeling nauseated) I try to only eat things that will give me the right nutrition I need. Obviously proteins with each snack/meal and other plant based foods. Carbs are really important too, I just eat when I feel up to it. My potassium is extremely low and instead of taking pills for it, my doctor told me to eat more potassium-rich foods. I've always loved eating well and have been aware of the food I'd eat (especially during pregnancy and post-pregnancy losing baby weight), but going through chemo you can't just eat whatever everyone else is eating. It's taking more of an effort - mostly because I also have a husband and three kids to feed so I have to just jump on my own meal planning. We're making it work :)

I get lots of aches and pains, the most recent being my leg and arm muscles being extremely sore. I have been doing some exercises and stretching at home everyday for over a month (getting my push-ups and yoga stretching in before surgery knowing I won't be able to do that for a while) so I know the soreness is from the Taxol. Each day is a little different, and I can take Tylenol as needed (I could get pain meds, but I do all I can to not take any medicine). I often daydream about a serious detox and sitting in a sauna when I'm done with chemo. It's going to be so good to get this toxicity out of my body! I had a tender spot around my sternum and after an exam my doctor told me it was arthritis connecting to my ribs. ARTHRITIS! Now I'm officially an old person, this chemo is aging me so bad.

I am so glad that Taxol doesn't make me foggy like my AC treatment did. I feel more like myself and I am physically able to do more too. This treatment is cumulative so I am aware I am a tiny bit more tired and nauseated each time, but I'd rather feel those things than feel like my brain is fading away! I'm grateful for my good days. Days 3-4 after chemo I am usually in bed all day, but all the other days I can do a lot. If you see me out and about then that means I'm feeling pretty well! Matt has even gone to work and I've been able to watch the kids, make lunch, etc by myself. Yesterday I took Violet to her 9 month doctor appointment by myself! Seriously, the small things I took for granted before I will never do again.

---COPING---

We are in good spirits. Most days are good days, but even on good days I have moments when it'll hit me. When I first found out I had cancer, I was extremely anxious...couldn't sleep, couldn't eat, couldn't stop crying, I would repeat the word "cancer" over and over again in my head. It consumed me, understandably. It's been months now and I am in a better place. Living with cancer is weird, like it's normal now? Dealing with this huge diagnosis is like a side job. I think about it all the time, I try not to worry when I don't have to. I try to enjoy the moments that are happening in front of me instead of thinking towards the future. There's a lot going on at home and it's so nice to be distracted by daily life stuff, but sometimes that in and of itself is hard for me. I think it's in those "normal" moments when it hits me the hardest because I can't pretend like I don't have cancer- it's there lingering over me like a little black ugly storm cloud. Last week I was way into Lego building. My boys have literally 30 small Lego sets that when taken apart, we put in one big bucket at the Lego table. One day I decided we should build all the Lego sets! We got the pile of instructions out and we picked one by one to build, searching for the right piece amongst a huge Lego pile. It's kind of like putting a big puzzle together. Anyways, after two hours of doing this I was sitting on the floor with my 5 year old and like a big wave that knocked the breath out of me I was reminded "I have cancer". CANCER. I have cancer. It was like someone punched me in the stomach and told me I have cancer for the first time. I kept finding Lego pieces, trying to hide the tears from my son. Cancer is so scary and I hate not being in control of something in my life. It feels like I have two lives, I hate it. I am grateful for Matt, a husband who can sit with me each night and talk about all of our thoughts and fears. This is big stuff, I am grateful I don't have to go through it alone, although I constantly feel guilty for putting this on so many loved ones.

We have a routine. Everyday is a good day when I get to spend it with my family.  Matt is able to work from home "as needed" which has made all the difference. I have lots of friends ready to help me, but it is so nice to have Matt home most days. It's fun. He enjoys it, actually. We can have a picnic lunch in the backyard as a family, I mean, we never did that with Matt before. I try to do as much as I can so he can actually work, but he usually spends all night catching up on work because he couldn't get much work in during the day-between three small kids and a sick wife there are lots of needy people in our family, haha. Matt has completely stepped up and taken over, especially in the mornings when I can sleep in. The best caregiver in the world :)

---INFUSIONS---

As exhausting as it is going to the Huntsman once a week, I actually enjoy my time there. I get to spend hours in a comfortable chair in a quiet environment where I can sleep, write, read, watch a show, eat, sleep, or visit with whomever is with me.

My first THP infusion was with Matt. I was nervous not knowing what to expect with this chemo. It was the "loading dose" infusion so I got a lot more of each drug, we were in the infusion room for over 6 hours. I had a small allergic reaction when I received the Perjeta, so we had to pause it for a while and then give it to me slowly. I haven't had a problem with it since.

Isn't he cute?

 Since I was so groggy after that THP chemo, I wasn't sure how I would feel after my first infusion with just the Taxol. We dropped the kids off at my sister-in-law's house (thanks Becky!) and Matt sat with me for this chemo. I was pleasantly surprised it lasted less than 3 hours! I got my own room again and Matt and I took a long nap :)

I have to add some Easter photos here, trying to keep up traditions and had some Easter fun at my sister's house.

My brother took me to my third infusion and sat with me the whole time. It was so nice to visit and catch up with him. After chemo, he needed to go to work so my sister met me at Huntsman where we enjoyed lunch in the cafeteria before getting another echocardiagram. So glad the echo showed my heart hasn't been damaged from the AC treatments and hopefully will continue to be strong. My sister brought baby Calvin who joined us for the afternoon :)

And then I got really sick. My boys got a 12 hour stomach virus 2 weeks before I got it, I thought I was out of the woods, but nope. My immune system is weakened from my chemo, but also my stomach isn't healthy because of what the chemo has done to it. In other words, this "12 hour stomach virus" was more like a 2 week stomach virus for me. When the virus hit me, I couldn't stop throwing up. I was so dehydrated that I passed out. It was really scary and all dramatic because it was in the middle of the night (thanks to my bro for sleeping on my couch while we were gone). I couldn't even make it all the way to the hospital without stopping in front of the beautiful Capitol building and its cherry blossom trees and throwing up there. Ha! After three liters of fluids and some ativan, I felt so much better. Trying to walk felt like I was hit by a truck and I really couldn't eat anything for 2 weeks, but I eventually recovered.  I told Matt next time the kids get sick, I'm getting a hotel :)

And just when you think things couldn't get worse, Matt broke his hand! It was the night before a big TPH infusion and luckily my parents were there. They were going to take me to that morning's appointment, but stayed home with the kids because Matt couldn't take care of them with a broken hand. So we got in the car early in the morning to meet with my doctor and our car wouldn't start. Our battery had died! We didn't have time to jump it so we drove my dad's truck (they needed our family car to run errands with the kids). It definitely hit a point where we just laughed. We're like, everyone stay away from us...we have the worst luck! Poor Matt. He needed a short cast for 3 weeks. So all in all it wasn't so bad, except those first few days of pain and swelling. I actually drove us and he slept all through my chemo. Not sure why he came ;)

Despite being sick that week, I was glad my blood levels were just borderline well enough to do this chemo. My potassium was low so I had to take these two huge potassium pills. I couldn't believe how big they were. 

My Uncle Jimmy and Aunt Connie so generously offered us their timeshare at Snowbird. They wanted to help us out in some way and thought it would be nice for Matt and me and our family to have a little getaway. They were so right! Especially after the week we had (haha) it felt so nice to get some fresh mountain air! Snowbird is absolutely beautiful. It's still ski season and the weather was a bit colder than the spring weather we were having at our house, but it was very refresing and the resort was so fun. My parents watched the kids so Matt and I could have some "kid-free" time aka "sleeping in" time and then my parents brought the kids up to enjoy the stay together. I loved our little getaway :)

My fifth chemo I drove myself. We were going back and forth on what would be the best thing to do and since I needed to leave before 7am and before or just as the kids are waking up, I didn't feel like it was the best thing for everyone if Matt drove me with kids in tow, dropped me off, and then drove all the way back home AND THEN came back to pick me up (it's about 30 minutes away with the morning traffic). I actually looked forward to spending 3 hours there to myself, reading and writing in my journal. The taxol alone doesn't make me feel groggy or tired so I felt I was well enough to drive myself, and I did! I am such a practical person, I figured Matt needed to work that morning as well. Thank you to the friends who let my boys come play at their house so Matt can work :)

My Aunt Annemarie and her family drove straight through the night from Portland and made it to my house in time to take me to my sixth chemo appointment. I felt so bad knowing how tired they were from traveling and driving, but they wouldn't take no for an answer and were happy to take me to my appointment :)

It was so nice to visit with them and their family (my cute cousins!) for 2 days while they were in town for a wedding. I am grateful for family that makes such great sacrifices to help us out and support us.

My seventh chemo (last week) we dropped the boys off with my sister-in-law (thanks Jourdan!) and brought Violet with us to my morning appointment. Before my full THP chemo every three weeks, I meet with my doctor. He takes a good look at my blood work, does a physical exam, goes over my side effects, and answers any and all of my questions. Matt was there for that part and then he took Violet home so she could nap and he could work and I headed to the infusion room for some lovely chemo. Matt's parents had just come into town where they planned on spending two weeks with the family for Matt's sister's wedding (yay!). They were ten months into their mission at the Cochabamba temple in Bolivia and we were so happy they got to come to Utah for a bit, excited to spend time together and to meet Violet. Well, after about ten minutes into their visit at our house and playing some soccer with little Nicholas, my sweet mother-in-law tripped and fell and broke her arm. It all happened so fast and it was such a bad break (I told you, stay away from our house!). We all felt so bad she had to go through that, they even have to extend their visit here for 3 more weeks. Anyways, this seventh chemo was a few days after that all happened. They wanted to help us out by watching the kids so Matt could be with me, but we figured it best if they visited with me during my infusion and then brought me home. It was such a nice visit, I wish I would have gotten a picture! Thanks mom and dad :)

I didn't intend to be so detailed on this update, I guess looking back through my infusions each week reminds me of how fast this treatment is going, and for that I am grateful! Thank you to all those who had my kids play at their house, for the dinners that were brought over, for the letters in the mail, for kind words of love and support, for the anonymous person that sent us a package of food from amazon pantry, for those offering date nights and babysitting opportunities. Thank you so much!

My social worker advised when I tell others about my cancer and my treatment to not sugarcoat it (to friends and family anyway). That is something that is hard for me to do because when I talk to others about my treatment I'm usually feeling like myself and "everything's ok". It's still sometimes hard to believe or imagine that it isn't. When people ask how the treatment is going, part of me wants to dramatically yell "everything is NOT ok! This is the worst thing that could happen! I hate this and no one understands (waaaa!!)". Honestly though, the majority of me feels like I don't want to bring people into our world. I don't want others to feel sorry for me (I hate that look on people's faces) or for them to learn the reality of my disease, our reality. But what's the reality? Well, we don't know the future. I like to imagine another 60 years full of life, but no one can tell you what is going to happen tomorrow or in a year, no matter how much we plan ahead. I think about a year ago and how I was 6 months pregnant with Violet and all was well. Being halfway through chemo feels productive, but I'm not halfway through my treatment. I still have a long road ahead of me. The reality is that even though I have a chance to be cancer free for years, my cancer is not going to stay away forever. The reality is there is the same chance cancer can come back after one month as it can come back in 5 years. We'll know more of my prognosis after surgery. So that's where we're at. This is what we're praying/hoping/wishing/working for - time. I'm doing my best, giving it all I've got. I'm taking care of myself in all the ways I know how so I have no regrets. I wish I could sneak a peek into the future and see how this is going to play out. That's what's hardest for me, the unknown.

Maybe they'll find a cure soon. I mean, it's about time, right?

 I know I can do this, my doctor is optimistic so I know he has my back. I'd just like to see the light at the end of the tunnel. I'm such a realistic person, I wish I was naive and just believed what everyone told me, but I have to go on thinking things over and over again...reading and reading and understanding all the different scenarios...there are so many scenarios. It just goes back to that saying "hope for the best, plan for the worst". As realistic as I try to be, I can't help but know in my heart that I have my best days ahead of me. Life is good, isn't it?

I have a CT scan next week. Please pray. Pray to see a big shrinkage in my tumors. As much as I'm looking forward to comparing the before and after scans, I'm extremely nervous. Love you all!