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 :)