Wednesday, December 20, 2017

Goodbye 2017

Today I met with my oncologist for my regular 2-3 month checkup. My blood work looked great (always slightly anemic, thanks chemo) and I got a clear bill of health for all other signs of cancer. No pain. No rash. No nausea. My heart is doing well. I still take Tamoxifen everyday and I still receive my infusion of lovely Herceptin every 3 weeks. I still take heart medication everyday so my heart can withstand these drugs. These infusions leave me groggy and tired and sometimes feel like I have the flu, but so far it's been very doable and I'm grateful for my parents and sister and husband and friends who support me every three weeks when I have to leave and be at the infusion center.

I have such a solid support system who encourage me everyday. They've been through the trenches with me and Matt from the beginning and are still by my side. And they never complain or make me feel like a burden. I've learned to stop apologizing and feeling guilty. It's ok. Thank you for showing that to me by your example.

Thank you to all those who continually give me and my family words of support and love. Thank you for the thoughtful note, letter, text, message, email, etc. Thank you for asking how I'm doing and asking specific questions about treatment. Thank you for letting me talk freely and not being scared when I'm real! Thank you for offering help in serving my family. Thank you for saying yes and moving things around to help watch my cute kids when I have appointments and can't be home to take care of them. Thank you for taking my son to school that one morning when I literally couldn't get out of bed. Thank you for understanding when I have to cancel plans previously made, or for when I'm late getting out the door and I don't have to explain why. Thank you for making living with cancer bearable. Thank you for easing my family's burden by taking on a small bit of it whether it be physical or emotional support.

Thank you and God bless you!

I haven't updated this blog because I didn't think anyone wanted to know the nitty gritty of what I've been experiencing this year. Cancery stuff is overwhelming. It's a lot of doctor appointments and testing and recovery and being tired. It's not pretty. I don't feel like I need to lay it all out there and make you see just what it's like. However, about a dozen people have asked me to update. They love reading about what I'm experiencing and going through. And (unfortunately) newly diagnosed friends of friends have come to read this blog to seek advice or hope. So OK! I will share some of what it's like being an oncology patient and experiencing what I've been going through these last few months.

First of all, most of all, I am doing well. I talked to my therapist today and as she checked my mood and we talked about how I'm doing, she said I have a healthy way of coping and a great perspective as I navigate my way through this mess. I am so proud of myself for being positive, optimistic, and having a healthy and strong mind. For some it is not a choice. Depression is real with cancer patients. But lucky for me it is a choice. I choose to be happy (well, like 85% of the time I am-sometimes I choose anger or frustration too). I choose to live the best life I can. I choose to not feel sorry for myself. I choose to serve others and do all I can to be a good example to my kids. I choose to do extra and make plans for the future. It's a choice. I know I have every reason to do and feel the opposite, but we only get this one life. We only get this one chance. My mortality is so real now and I have a wonderful perspective on how to live and what's important. Hooray for that.

I read and posted the previous July blog post because it shows what was entertaining my mind at that time.  It's always interesting looking back on what I was experiencing at the time and thinking "wow that was hard" or "calm down you have no idea what's coming...". A few new things I've experienced since that post was a big trip to the ER in the middle of the night because I had a ruptured ovarian cyst. It came so suddenly and was extremely painful. I told Matt as I breathed through the pain "this is how it ends..." trying to be funny, but kind of serious. Now I know what a ruptured ovarian cyst feels like and won't need to go to the ER for it (Tamoxifen causes these cysts but we can't know for sure), but grateful for my parents for being able to come over and be with my kids and grateful for a husband who takes care of me and does a great job at sleeping whenever I'm in a hospital bed, haha. I also saw a pulmonary specialist because......I have asthma. I guess life keeps going and other physical ailments happen that aren't cancer related. I wonder if I had asthma before cancer and my treatment made it worse or more noticeable? I now have an inhaler. Have I used it? No, I'm stubborn. But when it feels like I'm trying to breathe and wheeze through a very tiny straw (and it's not improving) I just may use it.

In October I started to get headaches. Those were accompanied by dizzy spells. Then blurred vision. I started to wake up with headaches and they lasted all day. For about 6 weeks I tried just about everything to try and relax and relieve myself from these headaches (were they caused by lack of sleep or stress?). I finally talked myself into messaging my oncologist. He asked me a few questions about my headaches. I sat on them for a week or two. Answered and asked him a question back. He replied. I sat on his answer for another week. Then I just flat out asked for a brain MRI. I don't get routine brain scans (because it's your brain). I'm still advocating for myself, asking questions and demanding answers. I got them.

I have an astigmatism. Left eye. I needed new prescription glasses.

I found this the day after my brain MRI. Getting a brain MRI was miserable. If you get a brain MRI do not listen to classical music as your choice. Listening to the lovely Beethoven pandora station while the vibrations and loud noises were clinking around my head felt like I was in some horror sci-fi movie and the classical music only enhanced the juxtaposition. I'd suggest some heavy metal or explicit rap...just kidding...

Now that I figured out my lungs (I also have a lung disease from the scarring from radiation called pulmonary fibrosis-holla!) I am finally able to increase my exercise and get in better shape.

Cancer gave me a 2 year setback. I am now where I was between the time Violet was born and when my cancer exploded (which was just a brief 4 months). It. Is. Frustrating. Frustrating to have so many setbacks like vertigo and cardiomyopathy, and vision problems, and lung issues, etc making it so I have to take breaks from exercise and recovery. However, I don't give up. I let myself feel that deep real and raw frustration and I use that feeling to power and motivate me to never give up.

Just like Poppy sings in the movie Trolls (Violet's favorite movie) When you knock knock me over-I will get back up again.
I set a goal for myself to do 10 (girl) pushups and to run a mile under 12 minutes by the end of the year. I hit these goals and more! It feels so good to run a mile without stopping. I am getting faster and stronger. It is so slow to see and feel the progress being made like I am used to precancer, but I am so much further than I was a year ago and that is truly motivating. I am excited to see where 2018 takes me and to be able to set new fitness and recovery goals. How about 10 regular push ups and to run 2 miles at a ten minute mile pace? Alright, new goal set!

This year was incredible. I had so many new and good and memorable experiences. I learned to play the ukulele, I watched my boys play soccer, baseball, and basketball, I went to Women's Conference, I turned 30 in Hawaii
 Matt and I went to the BYU vs U of U football game, I tried so many new recipes, I taught my kids to read (age 6), the alphabet sounds (age 4), and the alphabet letters (age 2). We went to California to spend a few days at the beach and visit family. 4 generations :)
This year I was able to speak to a few different groups and organizations about my cancer experience, I grew grew grew my hair and it's almost to my shoulders, Matt took me to the Symphony to hear Rhapsody in Blue (my favorite)
We went on a family adventure to Yellowstone National Park and it was my most favorite family trip 

We also adventured around the Grand Tetons
Another first was a big trip to Bear Lake, lots of quality family hikes without anyone complaining or needing to be carried

My favorite first was our family garden! We had 14 different types of produce growing in our backyard all throughout the spring, summer, and fall. My new favorite hobby.

Lots of infusion dates with my Matt
 We put together a gnarly Harry Potter Birthday party for my brand new 7 year old
Best money ever spent was buying Lagoon passes and enjoying it for 7 straight months and getting to enjoy the thrills of the roller coasters with my boys.
Celebrating Violet's second birthday was such a wonderful milestone! Love my sweet girl.
We were able to go to the Little Pink Houses of Hope retreat in Lake Tahoe. We met wonderful people and made so many family memories. 

The future is bright and we are so excited for 2018. We have about 6 different family trips planned. Just this next month I am going with Matt to an awards ceremony in Washington DC and so he and I will have a nice little getaway. We were also chosen by Inheritance of Hope to go on the metastatic breast cancer retreat to Orlando Florida in January. They are sending all 5 of us on an all expenses paid trip to Orlando where we will be able to go to Magic Kingdom, Sea World, and Universal Studios. We will learn a lot of good things on this trip and I will make a commitment to write about it here :) People are so good.  I am looking forward to all of the new things 2018 will bring.

I hope all the health and happiness to all of you. Thank you for following along with me on my journey :)

Monday, July 17, 2017

Summer time 2017

**I wrote this post in July of 2017. I'm not sure why I didn't post this at the time, but posting it now as to update my friends and family**

I hope everyone is enjoying this hot summer! I've noticed a pattern each summer... we get so excited for summer, make a list of activities and do ALL the summer things in June and by the time the 4th of July ends we're burned out! Is this anyone else? We've had a very fun-filled, adventurous, and memorable summer so far. This last week we've taken it easy and it's nice to regroup and rest. We're just loving life right now.

These last few months have been really special for me. I feel like I'm finally catching up with my kids. I haven't been home all day with all three of them (6, 4, and almost 2) since before my cancer diagnosis. Yes, they are little and needy and require lots of food, naps, attention, love, discipline, patience, and wipes (why are kids so sticky and when do they stop picking their noses?!). Anyway, I want to update everyone on what's going on in my cancery life.

First of all, I miss the "easy" days of chemo. You'd think being done with the big cancer treatments mean you can put it all behind you, right? That's what I thought. I thought I'd be able to get back to how I was before I was diagnosed.


I can't speak for every cancer patient, but finishing treatment has been harder for me than my actual treatment. Yup, there I said it! The physical side effects from my chemo, surgery, radiation has been never ending. Literally every week there's something I suffer from, something new. A normal person could just shake it off as nothing, but for me? I have to be dramatic and consider calling 911. Can I just tell you some of the things I've experienced in the last like 2 months?

Vertigo, again. Carbon Monoxide poisoning (we did have the fire department come for this, don't worry we're fine! (but if you want to know what CM poisoning feels like, it feels like you're dying from the flu...), Achilles tendinitis that moved into my calf and I thought I had a blood clot (there's a blood test for this, I had to go to the emergency clinic to be tested just to be safe since I'm at a high risk for blood clots), I had an allergic reaction to what I think was milk so I now need to see an allergist to get tested (I mean, seriously?). Let's see what else? One of my heart medications caused me to have a cough that got worse and worse until I was in so much pain from coughing. I was so mad one night at this stupid cough that I emailed my cardiologist who then the next day sent a new prescription and ever since I started taking that, my cough disappeared. I thought it was cancer in my lungs, it was really awful and scary and annoying. I had to tell people "sorry I'm not sick, it's just a side effect from medication...long story."

Fatigue, oh the fatigue!

And with the new heart medication I traded in coughing with more fatigue. I've had to nap everyday, I can't keep my eyes open. I think my body will adjust, but for now I rely on naps and early bedtime!

Lymphadema prevention...messages and exercise and staying out of the sun and being careful when I cook on the stove and I can't use my right arm to carry anything (groceries, purse, children...)

So now this blog post feels like I'm on a huge complaining rant. I think the point of all of this is, you never know what someone is going through. It's important that people know what stage 4 metastatic breast cancer looks like. Sometimes someone who is going through cancer treatments has hair! Sometimes they work a full-time job. Sometimes they're pregnant. Sometimes they run marathons. Sometimes they wear makeup and fancy clothes. Sometimes they never talk about cancer. And sometimes they ride a blow-up dolphin with their 1 year old daughter.
It's like that scene in the beginning of Incredibles. "Where are they now? They walk among us..."

According to the American Cancer Society, the median survival rate for someone with stage 4 inflammatory breast cancer is 21 months. Less than 2 years. Other metastatic breast cancers range from 3-5 years. That's not fair. 2 years, 5 years, 7 years, etc it's never enough time. And that short time left is spent being sick. I've been there, down the road with the dark thoughts thinking I was dying. When I was sick from chemo, it felt like I was dying. I mean, I had a terminal cancer, what other thing can you possibly think about?

Dozens of times this last year and a half I have heard of a story, movie, any person really who had died young. I search and search and find it's cancer. I dig deeper to find out what kind of cancer. 9/10 it's breast cancer. It's everywhere. I hadn't noticed before. Metastatic breast cancer kills an average of 40,000 Americans a year. 

There are some researchers/doctors who believe that with aggressive treatment for oligometastatic breast cancer coupled with those who have a complete pathological response to their first line of treatment (like me), there is a possibility of a cure. There are women, a small percent, who's cancer never comes back. Stage 4, like me, doing all the maintenance treatment and who live decades to an old age and dies of something besides breast cancer. A cure. 

I also read a study that showed a 98% ten year survival rate with women who had Her2+ metastatic breast cancer AND had a complete pathological response to treatment. Like me. 

I like those numbers. 

So, I have one foot into a possible cure (maybe it's just my pinky toe), and the other foot into a terminal disease. This is where I'm at. As I've studied the research and statistics I understand the feeling I had from my oncologist when I was first diagnosed. I felt from him "this is bad, but it's going to be ok." How strange, but true. I know I complained a lot at the beginning of this blog post, and yes some days feel like that (dramatic and wah poor me), but most of my thoughts and feelings are positive and normal, I think, for a 30 year old mom of three young kids. 

Ok, so I'm not sure what the point of this blog post is. I want to share with everyone that I'm doing really well! That considering all the "scary stuff" we experienced last year, I don't think it's scary anymore. Well, maybe like 5% scary, but I don't feel like I'm dying at a faster rate than anyone else ;)

Something I've learned is we never know what tomorrow will bring. Life can change so quickly. So I think to myself "I feel good today, today is a good day." And focus on today. I also enjoy my life now. I really do! All the small things that seemed to get in the way before no longer is there. Matt and I have decided how we're going to live our life and we're doing it! Life isn't perfect, but I think my life is pretty good. 

Wednesday, April 12, 2017

April Showers Bring (cardiomyopathy) May Flowers

It's April 2017, we're like 1/3 of the way through the year?! Time goes by so quickly! It's super stressful as a mom of three who loves to document everything, I can't keep up! I do my best to juggle living in the moment and trying to document those moments. I feel really satisfied when we have a family adventure and I don't take any photos, but it's also satisfying if I finish a photo book or writing a journal entry for my kids. I guess just like everything else in life, it's a balance.

Ok, that's not how I planned to begin this blog post, ha! I wanted to give everyone an update because I know so many knew I had a scan last week. So here's the story...

I told my boys I'd take them to the beach for spring break. I promised them and now they're at the age where they actually remember those things! I was grateful we were able to go to California for 4 days. We drove down and had so much fun. The car ride was actually a blast, thanks to Moana and gas station runs (literally, I made them run around the gas station at each stop.) We stayed a few days at the beach and the kids were able to just be kids for those days. Carefree and at the beach, that's totally our family's jam. We stayed up late for bon fires and ice cream runs, we ate dinner on hotel beds while watching Nickelodeon (what's up with those preteen shows? so weird!). Swam in the hotel pool, snacked all day at the beach, 100 sand castles with moats, jumping over waves, walks along the shore, sandy bodies, lots of sunscreen, and crashing in bed at night. It really was the perfect trip for our family. We haven't had one since Violet was 3 months old. We also got to visit family which is always nice!

We got back late Tuesday night and my scan was Wednesday afternoon. I had the contrast drink in my fridge ready to drink. I started when the kids went down for their naps. Matt came home and I actually drove myself to my scan (Matt met me there later with the kids, long story involving him having tendinitis in his know how we roll!). As I was on the freeway headed to my appointment, I had the most peaceful feeling. It was overwhelming and I felt so grateful. It reminded me of when I was first diagnosed and was carried by that peaceful feeling. I recognized it immediately as the comforting feeling the holy spirit gives, the prayers and fasting of so many. It's real and powerful, you guys! Thank you so much.

This was my third CT scan so I knew what to expect, but it's still so awful. The contrast drink is heavy and each time I drink it (about 9 oz every 15 min for about 1 1/2 hours) it triggers a gag reflex. It's hard to explain, but be glad if you never have to do it!

You know you're on oncology patient when...the radiation team knows you and recognizes you and asks you all these personal things they remember about you. This is why I love the U of U healthcare system, I feel like I'm part of this team. They treat you like a person even though you're sick, even though you're young, even though you have cancer, even though you have little kids, etc. I am so grateful for that! I couldn't imagine it any other way, I'm spoiled.

 I got an IV and got ready for the contrast dye to hotly spread through my body. A few minutes of scanning and then I was done. Next was a quick walk over to get an echocardiogram. Met up with Matt and the kids, still felt that relief and calm feeling. The echo went well. On the way home from my appointments I took my 6 year old with me to pick up some groceries I ordered the night before (click-list at Smith's is amazing! I highly recommend...I'll never shop again, ha!) So I felt super productive. I unpacked that morning, had a CT scan, and grocery shopped? I got this life down ;)

The next morning (still spring break!) we drove as a family to the Huntsman Hospital in Salt Lake to meet with my oncologist. We've only all done that once before, it was fun to bring the kids with me! My sister met us out in the garden area-young kids aren't really allowed at the Huntsman (well young moms aren't really supposed to get cancer, so...) I was so glad my sister could drop everything and be there to help us out! She's the cutest and brought fun activities for my boys. Grateful for her! I wanted to keep Violet with me. She is super shy so I knew she'd be happy in our arms and she's too little to know what's going on so I'm taking advantage of it while I can.

I did my bloodwork and got checked in the room. It's always the few minutes before my doctor comes in that I get super nervous. It must be related to PTSD. Same room, same people, same cancer...I could be receiving bad news again. Everything that's felt so good and normal could change again so quickly. I just held onto Violet and all the good feelings.

I love seeing my doctor and nurse. We made small talk and caught each other up. They loved seeing Violet, it had been about a year since she came to one of my appointments. She wanted to smile at my nurse, but didn't want my nurse to see her smile so she buried her cute little head into me :) When I meet with my medical oncologist he goes over any side-effects or symptoms I have. He asks the questions and then finishes with "is there anything you're concerned or worried about?" I love that question because he covers all the bases and lets me talk freely, but then gives me another opportunity to share anything else. I usually do (vertigo, pain, nausea, neuropathy, my nails...) there's always something. My doctor and nurse left the room for me to change into a gown and while they were gone (it takes me .5 seconds to change into a robe, haha) I saw my nurse had opened up my scan results. Of course I read them.

The first line was my liver. "The liver is normal in size. No focal hepatic lesions are present." And then in continues with each organ and bone. All clean

No metastases.

Breast cancer spreads to the bones, liver, lungs, and brain. Since it was in my liver before chemo, it's such a relief to have it be clean almost a year after finishing chemo. How long will it stay clear? When will it pop up somewhere else? Will it stay away forever? Yes it will stay away forever. I like to think that.

My doctor and nurse came in and opened up my scans on the computer. I know my doctor saves the worst news for last so I sit there as he's going over each part of the scan with some fear. What is he holding out on? Why is he taking the time to explain each part to me? I was super nervous. He showed me my liver first. Beautiful. Then we saw my lungs. I have bad scarring at the top corner of my right lung from radiation. That worsened because radiation worsens over time. I have no symptoms of this (that I know of) so we aren't worried about that (nothing we could do anyway...). Then we opened up a photo of my ovaries. I had ovarian cysts that shrank significantly..not concerned about cysts because they're benign and they're normal. Then he opened a photo of my spine. I thought, wow that looks really cool! I had never seen a photo of my spine. This worried me. But my doctor fiddled with the photo, showing me all different views and said something like it all looks good, there's no damage to the bone. I looked at my nurse and was like "so it's all clear? You were scaring me going through it all slowly cause I know you save the worst for last." My nurse laughed and said "I told him he should go in and say "clean scan" the first thing!" it was funny. I love my doctor and appreciate how much time he takes with me. He knows I like to be involved and proactive in my treatment and so he shows me that respect.

So the maybe "not so good news" I got this day was my heart. I had skipped one infusion and it had done nothing to improve my heart function, it just stayed the same. Get with it, heart! My doctor said I'd be skipping the one I had scheduled that morning and the next one in three weeks. And then three weeks after that I'd have another echo and then come back and see him to see if my heart improves. If it does improve then I'll go back on herceptin (no more perjeta, yay!) and if it doesn't...well I'm not sure what I remember him saying. But these targeted drugs effect the heart and we need to get my heart above normal function again. My doctor sent me to see a cardiologist (who works with cancer patients) to get me on some medication to help my heart. My oncologist would work with this cardiologist to get me out of heart failure mode and back to hopefully being able to receive more of my medicine (that's keeping my cancer away!).

The next morning I drove to the University of Utah hospital to meet with my new cardiologist. The cardiology department there is really cool! Everyone was super nice and the place seemed pretty new and fancy. I got set up to have an EKG done. That was interesting, I felt like Frankenstein's monster with all those cords! The cardiologist was so nice and informative and answered all my millions of questions. I learned that this heart damage could be caused by my first chemo (remember the red devil, adriamycin?) because adriamycin can do this to your heart even years later. Yikes. If my heart failure is caused by my targeted therapy then that's reversible which is good news. She's going to be aggressive in her treatment plan for me, first taking an ACE inhibitor and then in a few weeks I'll take another medication. I already have low blood pressure and these heart medicines are for people with high blood pressure. She told me "i'm worried you'd pass out while holding your baby." gee, thanks! I started taking half a pill and now I'm taking a whole one. I do notice a difference. I little groggy feeling (like a headache when you wake up in the middle of the night and you're super tired), but I feel it all day. I do my best not to bend over and if I sit or stand up I do so slowly. I'm avoiding salt. I went to the gym two times this week so far and I really struggled. So frustrating. Chest pain, headache, with dizziness.  If I didn't feel like an old person before, I definitely do now. My cardiologist said in a few weeks the symptoms should improve and obviously the point is to get my heart function to improve so with that I won't have these symptoms anymore.


So that's my long description of what happened this past week. I've now skipped 2 infusions and I'll skip one more. I love skipping them! I'm not even worried one bit, I'm enjoying the freedom. I'm grudgingly but obediently taking my new heart medication. Please pray for my heart to function normal again.

It will. It will, it will, it will!

strong heart=targeted drugs=staying cancer free

Thursday, March 16, 2017

Update: March 2017

I turned 30 and my hair is growing!
Hi guys!

Right now all three kids are napping and I'm laying down next to an open breezy window on a sunny warm day. This is when I nap or read or make myself something yummy, but I thought I'd get my laptop out and see what I have to share. I'm kind of "in a mood" which isn't the best time to write out my thoughts and feelings, but here we go! I want to apologize for two things. First, sorry for not updating anyone on anything for 4 months and second, sorry my blog's layout is super boring. Honestly, every post I have written I never reread or edit. I just posted and closed my laptop. I wasn't even sure what this blog looked like. I'm seeing it now and sorry! Sorry for a third time because I also don't plan on "improving" this blog. No one's got time for that!

Being my "cancer blog" for friends and family, I want to update you all with what's going on with me cancer-wise. Short answer...Everything's great! Little things here and there and definitely some life adjustments, but it's doable and we're doing well.

Long "real" answer...ugh. It's so hard. Being an oncology patient is the pitts. Harder than I thought. My life is hard. Wah! (insert a million dramatic whiney noises).

I've come a long way. During the first few months of chemo last year I would see old people and think "good for you, you're old and didn't die of cancer! GOOD FOR YOU!" and feeling negative and bitter at the injustice of it all (so dramatic, I know, but I have cancer, so...)

It's hard to remember what I knew about cancer before I had cancer, but I'm positive I didn't know much. I know I shouldn't assume everyone knows what I know now. It's been well over a year since I've been diagnosed and I still read articles and journals and "new findings" everyday. There is so much to learn and understand. It's not as overwhelming to me anymore, but it is a huge part of my life.

I think the biggest part of my update the past few months is just that-incorporating cancer to everyday life. Cancer is like, so normal, you guys! I have cancer. I will always live with this cancer. It's a part of me. It's never going away. I will be on some sort of treatment for the rest of life. I have no end date/surgery to remove my port. I can say the longer I go with my cancer....not growing (?) I can spread out scans and appointments because we know how the cancer is behaving. Does this make any sense? I have responded well to treatment, I am responding well to treatment and therefore I'm currently thrown into a "chronic disease" category.

Stage 4 breast cancer is terminal. Did you know that? "Terminal" is the scary word, not "cancer". I don't feel or think of myself as terminal so I don't use that word. I feel like it's disrespectful to those who are doing hospice or who are suffering in more ways than I can imagine. But I say terminal because I've been told this disease will shorten my life. How short? No one knows. No one knows when they're going to die, right? So I don't dwell on it. I'm not dying today, tomorrow, next week, next month. I'm very much alive! So I go back to not using the word terminal (again that feels dramatic for someone like me who is doing well living with this disease). I've met women with stage 4 breast cancer, metastatic breast cancer, who've lived 3 months and some who are living decades with this disease. Cancer isn't just one thing. Each cancer is different, each body is different. We learn more about this disease everyday and are improving treatments and quality of life.

I have a hard time explaining this to people who ask, because almost everyone that knows my journey thinks I'm done. "YOU DID IT!" "YOU'RE DONE!" "AREN'T YOU HAPPY?!"

Yes I did do it (it being the active tri-modal treatment of chemo, surgery, and radiation), so yes I am done with those things, and yes I am SOOO grateful I responded so well and I am NED (no evidence of disease). As far as I know of today, my cancer isn't growing as quickly as it was. I am so grateful and feel so lucky. Yay!

So what's with the attitude, Lisa?

Do you ever have a bad, grumpy day? That's normal, right? It's not just me? Well, I try my best not to use my cancer as an excuse, but it's hard. I feel like the side effects from my cancer treatments makes trying to do the minimal in my life extra hard. Pre-cancer Lisa had so much energy! I could multi-task 20 things and get everything done and then go for a run. I was a machine! Lisa post-cancer takes a week to do one thing. And if I try and step it up and accomplish more in one day than I'll be out for a few days.

Everyday is different. One Saturday I was so productive and felt so good! I had an appetite and I exercised and cleaned and enjoyed my family. The next day I could not get out of bed, literally. I stayed in bed until 3pm. That day I had like 800 steps on my fitbit. Yesterday I had 11,000 steps. See? How annoying is that?

This is fatigue. Real chronic fatigue. This is why we shouldn't judge others who don't look sick but are sick. It's real and it's frustrating. Do you think those who suffer with fatigue enjoy being in bed all day? Someone like me who feels the teeniest bit of energy uses it! Something I wish I would have done sooner was see an occupational therapist. I have vertigo/meniere's disease as a side effect of bad luck. It happened in November and has RUINED my recovery. I'm learning how to manage this awful thing thanks to my occupational therapist. After meeting with my OT several times for vertigo, she began to help me with my fatigue and chemo brain. Ah, I learned so much! Mentally, emotionally, and physically are the three areas that I need to relearn and build up endurance. I have to learn to think and feel again thanks to chemo and radiation. I am learning how to distribute and prioritize certain things.  This is tricky because remember how I have 3 little kids? I used to be super-mom and now I need help with mostly everything. It's so frustrating. But I am able to watch and take care of the three kids by myself everyday. I'm doing more and more productive things during the day. I'm doing all I can to serve others and only ask Matt for help when I really need it. He hates when I push myself, but that's how I get better. I'm moving up in weights at the gym and I'm able to push the double stroller and go for a little run. I'm less nauseated now so I can eat more a variety of raw healthy foods than I could before and I'm really tackling a lot of "to-do" lists I haven't touched in over a year.

Ok so I think I hashed out fatigue enough. The herceptin and perjeta targeted therapy infusion treatments I've been getting every 3 weeks were going well. Really minimal side effects. Because these drugs can cause heart damage I have been getting an echocardiagram to check on my heart. The ejection fraction is what we look at, to make sure my heart is pumping at the normal percentage which is anywhere between 55-70%. I started at 65% and then hovered around 59% all last year. After my echocardiagram in February we found my ejection fraction dropped to 53%. Not too dangerously low, but still a big drop. I called and talked to my nurse practitioner to find out what I could do or what could be done and there were a few options. We decided to skip one herceptin/perjeta infusions (which was scheduled for today, ha!)

We have a fun spring summer planned. A california beach trip, yellowstone, boating, camping, we got lagoon passes, signed the boys up for sports, we are getting our backyard all set up for lots of time outside including my very own veggie garden! Life is so good. Even though I complained up there, I feel like having cancer gives me a fresh perspective on everything. I've learned to let things go, there's no time to hold grudges, who cares if the house is messy or we don't look perfect? What memories were made today? How have I made an impact or shown love to someone else? How do my kids feel today? Do they feel safe and loved? It's so easy for me to focus on those things now. Not only because I'm metastatic, but because I was "gone" during my 9 months of treatment. I missed out and so I know what that feels like and I feel like I know what I should focus on in my life now. I enjoy the mundane, the silly and what may seem insignificant, because I've learned those things are not insignificant! It's living. It's life.

I have another CT scan (chest, abdominal, pelvis) on April 5th as well as another echocardiagram to see if my heart function improved. I meet with my doctor on the 6th to see the results. I have no symptoms of cancer so my doctor expects to see another clean scan. I'm worried my doctor will want me to stop the herceptin/perjeta infusions if my heart hasn't improved. I was hoping to get 5 years out of these drugs and not just one year, so keep me in your prayers. Prayers my heart will recover and I can get these drugs again without affected my heart anymore. And especially prayers for a clean and clear scan!

Thanks for all the love and support, you guys. I know I have so many cheerleaders and people who really love and care about me. I'm glad I opened up a little on this blog. There's really a lot to this lifestyle, and I should be more open to sharing more. But one thing at a time. Keep me and my family in your prayers :)

PS. I wanted to add I turned 30 years old last month. THIRTY! Matt took me to Oahu, Hawaii. We were there 5 days and that was enough to explore a different part of the island everyday. I was proud of myself for doing so much. The only thing I couldn't do was hike, but that motivated me to go back and visit and do ALL the hikes. Grateful for the chance to go and have a carefree and relaxing vacation with Matt. Don't you think it was well-deserved? ;) We had so many fun adventures on this island, Hawaii felt like a home away from home.
I was so happy every time I saw a sea turtle :)

Tuesday, November 15, 2016

A Clear Scan and The Huntsman 5K

It's been a month since my last update, a lot has been going on! We had a very busy October and November, enjoying all of our fall traditions and activities. We've settled into a wonderful routine which includes spending our days and evenings outside. I can't even believe this warm November weather! It's heavenly. My mother- and father-in-law have come over once or twice a week to help me out in the mornings. I wanted so badly to get back to being in charge and doing everything on my own, but I couldn't make it through the week. I needed more sleep. It's hard to explain this kind of fatigue, let's just say I can sleep for over 12 years and still feel tired. If I don't get a lot of sleep it makes me feel ill (dizzy, foggy, nauseated, tired). So I'm grateful for Matt's parents to come watch the littlest of the Lyons in the mornings so I can get a few more hours of sleep/rest. It really has made all the difference, I'm so lucky to have such a wonderful support team. Especially Matt, who goes above and beyond making sure I feel well. I wish I was 100% already! I'm anxious to get my health back in full, but I do feel better each week and more of myself. I am pleased with how far I've come and I'm truly proud of myself for staying so positive and happy. "Everything's going to be ok" is what I felt in the beginning and it still rings true. 

Early October I had an MRI done on my spine. I had a pain in a specific spot that lingered for over 6 weeks. My MRI came back clear and my spine looks really good, actually. I learned the pain was inflammation from treatment and soon went away with medication. I was grateful my oncologist took my symptoms seriously and wanted to quickly rule anything out. He really listens to me. He gives me his medical advice/opinions, but lets me advocate for myself. For example, he did not think I needed a routine scan. But I asked for one and he didn't put up a fight. I know I've said this before, but it's so important to advocate for yourself. Just as important, you should have a relationship of trust with your doctor. I trust my doctor and I believe he also trusts me and my instincts. So he scheduled for me to have a chest/abdominal/pelvic CT. 

Like I said, there was no medical reason to get this scan. I had no symptoms of tumors, I even had good blood work, but being stage 4 and knowing the cancer was in my blood and lymph system already, it's important to be aggressive in catching anything early. I felt good about getting a scan. Mostly for peace of mind. I really didn't put a lot of worry or stress into the scan, but of course you think "what if we see a tumor?" and "what if the cancer in my liver pops back up?" My 6-year-old and I went to the clinic to pick up my contrast drink. There's so much sad juxtaposition when I bring my kids with me for things like this. Putting my contrast drink in the fridge next to my daughter's sippy of milk?  It's strange how normal it all is. Our life is and will forever be filled with treatments and scans and sick mamas. It used to make me really sad, but it doesn't anymore because I realize it doesn't affect my kids negatively like I thought it would. I'm so proud of them!

Prepping for my CT. I had to fast for 3 hours beforehand. Starting an hour and a half before, I had to drink 6 oz of gross gross gross contrast every 20 minutes. Makes you feel so icky! Once I got to the clinic, the technician started an IV in my arm and had my blood tested to see if my kidneys would be strong enough for the IV contrast they were going to give me. When It was time to start I laid on my back with my arms over my head. The technician hooked up my arm to the contrast.
 I had my scan done at the new U of U Farmington Health Center so everything was brand new and so nice!
The scan took 5 minutes, thank goodness! It was interesting this time because I don't have my breasts so I could feel very heavily the contrast going through my chest. My skin is thin on my chest and feeling that heavy and warm stuff go through my body is an awful feeling. But we do what we need to do, right?

Walking out with Matt and I saw a picture of a double rainbow. I couldn't help but get a photo with this pretty rainbow, they always remind me of Violet :)
I spent the weekend with my family. I had my every-3-week treatment and spent the rest of the weekend sleeping and enjoying my visiting family. It was nice to keep busy and entertained. So grateful for family.

My doctor called me today with the good news. He said "everything looked fine. Your liver, your bones.." and I thought, well what does that mean? What's not fine? My doctor doesn't show too much "yay!" emotion when he talks so it's hard to know how to react in these kind of situations. He told me I have some inflammation in lymph nodes in my lungs he said was most likely from radiation. I was warned my lungs could be affected before I started my radiation treatment. I'm not sure how this will affect me long term, something I will ask next time I meet with my doctor. I also have cysts on my ovaries which my doctor assured me is not cancer related. I guess cysts can come and go and it isn't something he is concerned about. Most likely enlarged because of my Tamoxifen drug I've been taking. My doctor said "Nothing scary" and "nothing related to the cancer". In summary, we can see the side effects treatment has done to my body, but there are no cancer tumors.

No cancer!

It is a relief to finally know I can keep my IBC beast away for another few months. I can sit pretty knowing there aren't tumors growing again. I feel so lucky. I have known a few women who passed away recently and a lot more who are affected so deeply by cancer. I hate cancer so much. Not a day goes by I don't feel lucky to be alive! (and you should too!)

Last month our family participated in the Huntsman's 5k. It was a beautiful fall day and we were joined by the Brown family! They have been some of my biggest supporters this year, I'm so happy we got to do this with them! The 5K was up and around campus and the hospitals so it was very hilly. We had two strollers, but we made it! It was challenging for me, but I told Matt next year I want to run it! You think I'll be able to? Wouldn't that be cool :)

Matt raised $245 and I'm so proud of him! 100% of the sign up fees and donations went to fund breast cancer research at the Huntsman Cancer Institute. 
We are extra grateful during this season of Gratitude and Thanksgiving. I feel so blessed to be surrounded by wonderful family and friends and to still be cancer free!

Tuesday, October 11, 2016

Update: Finished treatment September 2016

It's been a month since my last radiation treatment and I guess I'm finally coming around to posting about it (kind of tells you how busy life has been). First of all HOORAY to be DONE! We've all been waiting for the fall season to be here when I would be complete with my cancer treatments.  I had a hard time accepting this because I am annoyingly stage 4 and I had this constant nagging reminder of treatment for life you'll never be done, Lisa! A few weeks ago I was playing the piano in our home. Little Violet was puttering around dancing and hitting the keys and I was playing music from the Primary Children's Songbook. I was struck with a thought/revelation. It was so overwhelming and powerful.

See, I was understandably carrying a burden I didn't know what to do with. I was doing well, but still living with metastatic breast cancer, My life stopped and I was face to face with my own mortality. How do I live with this disease? The unknowns? How do I be happy to be done with treatment, knowing it technically isn't over? What I felt that day was I didn't need to worry about being stage 4. I don't need to focus on that part right now. It sounds simple, but it was a big moment for me. I had to really let go of those fears. I decided right then to not live in more fear than I need to. I now have freedom to experience joy and be happy. What a liberating feeling! I'm focusing on becoming healthy and doing everything that I've always wanted to do in my life. So grateful to be alive, but more importantly so grateful to feel JOY. Because I fought so hard to live, I now have a different perspective on life and that is truly a gift.

I want to update everyone on what is going on from here on out. First of all, radiation was exhausting both physically and mentally and I think it's going to take a long time to recover.  Matt's parents came over everyday for my 6 weeks of radiation, my mother-in-law would stay with the kids and do whatever was needed at home (I just wanted her to love up on the kids and play with them) and my father-in-law drove me the 40 minutes to the hospital. Some days I had other appointments, but most days it was just my 20 minute radiation appointment. Then he'd drive me back home and based on how I felt that day they would stay or I would want to take over and attempt at motherhood. I'm so grateful to have had them by our side everyday for so many months. A lot of people don't have that kind of support, I don't take it for granted. My kids benefited the most, having gotten so much closer to their grandparents :) I stayed strong for the most part, but I have to say I did struggle leaving my kids everyday. My heart completely broke when Nicholas would cry when I'd leave or if I had to miss picking up my Kindergartner on his first week of school. I needed a daily nap and I needed help with my kids. It was hard and humbling. It made me appreciate things that were always taken for granted. The hard part wasn't receiving radiation, it was not being me because I was so sick from treatment. Slowly, week by week, I gained more energy. Now that it's been a month, I can take care of the kids without help and Matt can get a full work day in. We've figured out a new normal and hopefully as each week or month goes by, I will get stronger and stronger.

Matt came with me to my last radiation appointment. It was a cute date! He got to meet my technicians and see them prep me on the machine. The last 5 treatments were a boost radiation dose to my scar line. It was like a big metal stencil and they radiated the heck out of my scar. I also met with my radiation oncologist one last time. Here we are waiting for that appointment.
I found the photo of Matt and me at my very first appointment when I was first diagnosed (with Violet in tow). Quite the comparison. Can't you see the change in our eyes? But mostly we both have less hair, haha.
My radiation oncologist expressed the hope he had for me. He said he'd like to see scans in a few months and there was probably a 50/50 chance of seeing the cancer again. A coin toss, you guys. I don't think I'll forget the look on his face when he held up crossed fingers and then so sweetly grabbed my hands and said "We'll pray."

My doctors have finally come to the point where their work is done. They did everything they could to save me and rid my body of cancer and it worked. I can always see the relief in their eyes (vs the fear I saw when I was first diagnosed) and so I will continue to do my part to keep my body as healthy as I can: breathe, drink lots of water, receive all my vitamins through healthy food (I do take a vitamin D supplement because I don't drink milk and one girl can only eat so much salmon...), exercise daily, stretch, stress relief. I began endocrine therapy which is a daily pill call Tamoxifen. So far little side-effects (mild hot flashes). I need this pill because my cancer was 10% estrogen positive so we know we can inhibit growth to any lingering cancer cells. I will also be receiving my targeted therapy drugs Herceptin and Perjeta every 3 weeks. The Huntsman opened up an infusion center at the new University of Utah Healthcare Clinic in Farmington (if you're local, you know how exciting that is!) so I only have to drive 10 minutes for those appointments. I didn't realize how quickly 3 weeks creeps up, it's a new way of life but it's doable. I have minimal side effects from these drugs too. I had a lymphatic massage from my lymphedema specialist last week and was relieved to confirm there is no lymphedema or swelling or fluids or inflammation in my arm or chest. What a blessing! I am still and always will be at risk, but it is very manageable to do a small massage and stretching every night to lower my risk and treat any fluids that may be built up. Radiation did a lot of damage, but I exercised, stretched, lotioned, and massaged my way through it and that made all the difference. My skin looks and feels amazing now and I couldn't be happier.

The radiation department left me with a certificate of completion which was super cute of them. I also got a lovely soft blanket that is one of the new household favorites. Here we are outside celebrating this mom being done with treatment!
Thank you for all the continual love and support and prayers! I know so many are still praying for me and my cute family. I have a CT scan scheduled in November, pray I stay NED. Pray we see no tumors. Matt and I are picking up the pieces from our crazy year and figuring out how to move on, but we are doing it with smiles on our faces and while holding hands. Life is so good and I'm grateful to be alive, be a mom to my cute silly kids, and to still plan a future with Matt. Find joy in the journey.