Tuesday, May 17, 2016

"Oh My Hair!"

((Anyone remember that from the dolphin show at Sea World?))

I took this photo the day Violet was born--almost exactly 6 months before I shaved my head.
I remember sitting next to my surgical oncologist the day I was diagnosed and telling her I wanted to shave my head and do this surgery right now, I was so ready! I hated hated hated the awful helpless feeling cancer gave me (gives me). I promised myself I would remember the "there is nothing worse" feeling I felt as I first sat with my doctor. So when I would feel sorry for myself in regards to losing my hair, I'd do my best to remember that feeling. This worked for me. I think anyone losing their hair because of (stupid@#$!%!@#$$@!!) cancer has a right to grieve the loss of their hair how it works for them. For me...I didn't want to make it a big deal. I didn't want to talk about it, drag it on, "do my hair one last time" sort of thing. I knew if I made it a big deal then I would be sad, I would feel all dramatic, and I would make what I was going through harder than it needed to be. I've seen videos of girls with cancer shaving their head and also in tv shows and it was so sad and left my crying! I felt so sorry for them and thought that must be so hard! I didn't want that. I didn't want others to pity me more or cry for me and feel sorry for me. I didn't want that memory, for me. 

It is sad. It was hard to shave my head. It felt like how you would think it would feel. It was personal and real and I hope I'll never have to do it again.

I have learned that those with cancer need to do whatever feels right to them, this journey is unique and cancer patients should have the freedom to do whatever, however they please.

I did my hair like this its last week, sorry hair. 
My medical team told me the hair on my head falls out after the second chemo. I had longish hair, well past my shoulders. My nurse suggested a hair cut before, so when it starts to fall out it won't feel like so much hair. Yick. Others suggested I do something funky, like a cool haircut, dye it, give my boys scissors and let them do something crazy. I didn't want a pixie cut or mohawk, I figured I'd get that once my hair starts to grow back. I chose to go about this with a little strategy...I would slowly go shorter and shorter until it got to the point where it became a nuisance and then I wouldn't be sad to lose it. I didn't want to go straight from long hair to shiny bald in 5 minutes, I gave myself a few days.
I chose a short haircut. I didn't want to like my short hair. If I were to do a short cut and keep it I'd do a cute bob, but I wanted it as short as possible so the back was chopped off and the front length was to my chin. I even got bangs! I've never had bangs before. I'm not sure if I like them, but it was fun to have for a week. 

This is how it all went down. Three days after my second chemo I saw lots of hairs on my pillow when I woke up. It's happening! I remember taking a shower the next morning and just...like....how do I describe this? As I ran my hand through my hair to get it wet I got handfuls of my hair. So much. I ever so gently shampooed and rinsed it. So much hair fell out, I think I called Matt in to help me clean it up. I dabbed my hair with a towel and then shoved all of my wet hair under my hat. I was so scared to brush it or touch it at all!

I kept my hair under my hat the rest of the day. Every so often stray hairs would fall onto my shoulders. I was scared to take my hat off, so I would run my fingers through the already lose hairs hanging out under my hat and the hairs just snapped off. It had no strength. It didn't feel like I was pulling my hair out, it just fell off my head. 

The next day it got worse. Really bad. I announced "today is the day! I'm doing it!" There, I decided. My social worker was right, the anticipation is the worst part. I had all this adrenaline. I told Matt to get the clippers and we'd just "casually" do it in my bathroom. My parents were at my house so they watched the kids, I didn't want the kids to know what was going on. I didn't want to scare them. Matt put some music on and I looked in the mirror one last time.

Oh no, don't cry don't cry don't cry! I felt this surge of grief, like a "how can I do this?! I have to be so brave right now. I can't breathe" kind of a feeling. I looked at myself, really looked at myself. I told myself I could do this. I reminded myself of that feeling, that helpless feeling. I could do this. I can shave my head. I have to do this, let's get it done and over with. I can do this.

It was a moment.

So I sat at the edge of my bathtub and Matt went to work. Again, I wasn't ready to be shiny bald, so I told him to use a size 2 clipper. I didn't watch in a mirror and I told him to do it quickly. I did some side glances at him putting handfuls of my hair into the trash bag. So much hair, you guys. I couldn't imagine losing it slowly. It had only been a few days of losing hair and therefore hair was all over my house and in my hats on my shirts even all over my baby. No more.

Matt finished. He looked at me, both of his hands cupped around the sides of my face and smiled, laughed, and teared up and said that I looked so cute and I was beautiful and he loved me. 

I put my hat back on and marched out of that bathroom and put my kids to bed. It took until the next day for me to really look at myself without a hat. I would "peak" at it by lifting up sides of my beanie.
It was so weird! I was all giddy and was getting used to how my scalped felt. Losing your hair as a chemo side-effect hurts. It feels like someone is pulling your hair out. With the weight of my hair gone, it felt better. But I still had hair, so these tiny pieces were falling out still. I'd shower and just rub my head and all the tiny hairs would fall out. I'd rub it off until I started to get my bald spots. When I looked at my hand after running it once across my head, it would be black, full of tiny black hairs.
This was just a few days after the initial shave. Now that my hair was really balding I was ready for a shave. We watched a tv show and Matt buzzed off what was left of my hair. Done.

So I've been pretty honest in my blog. So I'll be honest how I feel about losing my hair...

I don't mind it. 

I like being bald.

I'm used to it.

It makes me feel cold.

It doesn't make me sad.

I wore hats the first few months because it was winter so I needed warmth on my bald head. It was also easier to throw on. Once spring came, I realized I preferred scarves on my head when I went out, the soft and breathable fabric felt nice on my head. Sporting a ball cap is my equivalent to throwing my hair up in a messy bun, like when I"m running errands and not wearing a real "outfit". When I'm home I rock it bald. 

I chose not to buy a wig. I think if it was convenient I would probably go look at them and get one for fun. I've told Matt I wanted to go look at them, but we just never made it a priority. I know I wouldn't wear it. It would be just for me, for fun. Maybe going on a date or church or somewhere nice. So I'd wear it like 5 times, haha. But no, I haven't bought a wig yet. I think wigs look great on some women, but for me...I think I would feel silly, it's just not me. Before I cut my hair, we joked (but were kind of serious) why don't we shave my head now and then make a wig out of my real hair?! Or a makeshift wig that's just a pony coming out of a hat!

Breast cancer is so rude to women. It takes away and damages the most feminine physical things-hair, nails, skin, breasts, and ridding the body of all estrogen. Hair and nails will grow back, skin will repair, and breasts can even be reconstructed one day, but you guys...I don't care! I care about my quality of life, my health, how this effects my family, and that I get to live.  Femininity will come again one day, but for right now it's the right outfit, makeup, a manicure, one of kids in my arms, and a husband's hand to hold. And that's fine with me. My heart aches for those women that have a hard time with this. Losing your hair can be very traumatizing and a big deal. It is! No one should ever say "it's just hair!" to someone with cancer. Because I have an attitude I would say "then you shave your head" if they told me "it's just hair". I'm grateful I didn't have a hard time with this. I've always felt confident in the way I look, so I'm sure that same confidence helped me through losing my hair. 

Being bald from chemo just screams "I HAVE CANCER!" doesn't it?  It surprised me no strangers have approached or asked me about my cancer only because I was told by those wiser than me that that would happen. I get the pity looks, the double takes. If I'm out and about (I'm probably with my kids, therefore I'm not paying too much attention to other people) I notice a look I get. Strangers stop in their tracks (like a deer in a headlight) and for a moment it hits them and they stare at me until we make awkward eye contact, where they'll still stare. Maybe they're thinking of someone they know that has died of cancer, or they're wondering what kind of cancer I have, or they're trying to come up with reasons why I got cancer...trying to convince themselves that I did something wrong therefore they can live in a mindset that they are free from getting cancer. I know it's sad. Poor me...yadda yadda, I'm sick.  I get little comments during small talk conversations, mostly cashiers, if I say something like "yeah it's been a long weekend" and they'll say "oh I bet!". Matt and I took our kids to the grocery store the other day and as we were filling our cart a cute elderly women started giving me suggestions on easy frozen dinner meal ideas. I was totally thrown off, and then realized "oooh, thanks!" she was trying to help me, knowing I was tired and weak. People are so nice to me, and helpful. I understand it takes courage to talk to someone like me, especially a stranger.

Truth is, I'm still me. I'm the same person. I have the same sense of humor, I am still a mom to my kids, I'm a supportive and loving wife. I am stubborn and do a lot more than I should or can. I love being a person and not being sick in bed- I have to figure out dinner, get my kids ready for the day, get the mail, register the car, clean out the garage, schedule play dates, potty train, keep up with baby books, take kids to birthday parties, go to church, etc. I've tried my best to maintain friendships and relationships to those who have stuck by me through my treatments. I understand, trust me, that this is scary for my loved ones. Some family and friends have "ducked out" and I don't hear from them anymore. And that's fine. Like really, we all have our own lives. Cancer isn't for the weak. It's a lot. It's unpredictable and scary, most people's worst fear. This is why I am SO grateful for those that are supporting us still. We had 2 friends bring dinner over this weekend without asking for it, I got 3 cards in the mail that made me tear up, 2 packages this week from family out of state, my aunt and uncle generously gave us their piano which has been a wonderful stress relief to play, I've had several visits from different friends this week, and we even got to go out on a date. Matt and I have made this part of our life. We're doing it. We're making it work.  We cry, but we also laugh a lot. Every night when I wash my face I tell him I look like a cancer patient, all bald, sunken eyes, and hardly any eyebrows or lashes left. We laugh, cause it's funny to us. We're not giving it more power than we need to. I'm so grateful for a loving and supportive husband. He looks at me often with tears in his eyes (even when I'm being cranky) and tells me he thinks I'm beautiful and amazing and he loves me more now than ever. I am so lucky to have that real kind of love!
I don't want being bald or having cancer to define me. It's not who I am. It's something that is happening in my life right now, but I plan on putting this behind me...behind us! Being bald is temporary. Aren't y'all curious to see how the hair grows back? I think it would be hilarious if it came back gray. I told Matt I wouldn't be surprised, it would actually fit the rest of my body pretty well since I've already reached "old lady status".

Thank you to everyone that has sent me a scarf, hat, or a beanie. Thank you for the continual love and prayers on our behalf. We're staying positive and expect good news from here on out :)

Thursday, May 5, 2016

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.


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.


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

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.


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 :)


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!