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

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