June 17th: Scariest Week So Far

Wednesday when I had meds! 

Major update!  Get ready for a long post.  Thanks for following along! 

On June 4th I went in for what would have been my 2nd round of 4 in my last cycle of chemo.  I was ready to go and even though symptoms had been tough with this cycle, I knew I was close to completion!  I had a standard Echo test on my heart that morning and when I arrived at my appointment I was so disappointed to learn that I would not be able to be treated as there were some concerns with my heart. My ejection fraction, which deals with how your heart is working and how much blood can pump with each heartbeat. Since mine had fallen below 50%, I could not be safely treated and we needed to pause treatment. One of my chemo drugs is what caused the heart issues. I would be lying if I said, I wasn’t completely disappointed. However, I knew that I needed to deal with the heart the issues first. My doctor got me in to see a cardiologist on June 10th.  From there I was scheduled MUGA test on my heart. This was actually pretty cool. They basically draw blood and then spend a while working on that blood that they’ve drawn while putting radioactive tracers in the cells, then they put the blood back into you so that when they’re doing the imaging and they’re able to see these things light up in your heart and help to see what’s happening. I hope I am doing justice to the explanation of this. Feel free to Google! 

The results from this test came back and were actually at 45% so we took a pause on all chemo until my teams could figure out what to do.  MAYO is AMAZING in this way because they have a team model where you are just wrapped in their arms with all the different pairs that you might need.

They put me on some heart medication basically to lower my heart rate so that my heart didn’t have to work as hard while they were trying to figure out what the next steps would be. On Friday, June 13, I left for a quick trip to Phoenix with Harper and our too amazing friends. Harper’s 13th birthday trip had been delayed due to cancer, so this was the time to make it happen. I discussed with all my doctors, and they assured me that I was ok to travel and just to make sure I knew where the emergency room was as always.  This is something you just learn to do as a cancer patient! 

We left and all things were going great when we arrived. My new heart medicine did give me some side effects like feeling tired, dizzy, and I just felt a little off. This all was related to the medicine or so I thought.

Snuggles with Harrison at the hospital. 

Saturday rolled around and I started feeling a little different, but thought it was the medicine side effects, the chemo remaining in my body, and the 110° heat! I got sick a few times that day, but in general seemed ok. I usually don’t respond well to heat, so I figured it was just that.

  Sunday morning, I woke up and things were not    looking so great. I continued getting sick and was having a hard time doing anything other than laying down. My body was so tired. I can’t even explain what it felt like, but I could barely move. I tried to get up to try get dressed, brush my teeth, and get up and moving, but I had to keep sitting down because I just couldn’t do it. We were staying at my cousin’s house, so Missy and the girls had some pool time, and I took another nap. Around noon we were leaving to go to an area hotel for our last night and all I could think was how am I going to get from the house to the Uber.  It was exhausting!  I had no energy, my breathing was off, and I couldn't focus on anything. We got to the hotel and luckily, I made it to the room where I just pretty much collapsed and took another nap. We had a tour on the way to the room, and I thought I was going to pass out.  I just wanted the hotel employee to get us to our room.  I slept and then attempted to go to dinner.  We arrived and almost immediately ran to the bathroom.  Open concept kitchens near the restroom are NOT a good idea!! By the grace of God,
I made it into the bathroom before getting very sick.  Harper was outside trying to check on me, but I couldn't pull myself up off of the floor.  It was TERRIBLE! I went back to the table and before long I was running to the bathroom again.  This time I wasn't as lucky and got to clean the floor of the stall.  I remember just lying there on the dirty floor thinking that this couldn't be real.  We left quickly and I went to bed immediately when we arrived at the hotel.  

Harper's Birthday Trip

Monday morning, when I say that I woke up, I don’t even know if that’s what happened. I sent Harper with the girls to breakfast and asked them to bring me a yogurt. I'm not sure what I was thinking because there was NO way I was keeping anything down.  Even drinking was becoming increasingly challenging. Missy took the girls to the pool again and I continued to rest. At this point, I was basically crawling on my hands and knees to the bathroom and then getting back to my bed where I would collapse with zero energy. It was taking everything in me just to roll over.  Missy checked in and brought me Gatorade and fluids to attempt to and get me going. She was doing everything she could and is an AMAZING friend.  But many of you know I can be a bit stubborn, and this time was probably even more intense.  I also just kept telling her I thought I was tired and that the medicines were giving me a hard time.  Of course this wasn't accurate, but in my mind, I also wasn't comprehending the extent of the situation.   As the day continued, I started considering going to the ER for fluids, but our flight was at 4:30pm. 

Family visit on my first day being treated. 

My brain was basically shutting down and I kept telling myself you’re fine or I think I’m dying or how am I going to get up. It took every ounce of energy I had left, but I got up and got dressed to go to the Uber. Walking to the lobby was so hard.  I kept wondering why it was so hard to move.  As we waited for the Uber, I was sure I was going to be sick.  Sure enough, before we even left the hotel, I had to open the Uber door so that I could get sick. Things were not looking great. We made it to the airport where I fought my body to get to the ticket counter to ask for a wheelchair escort. It felt like forever, but they finally arrived.  Missy, Harper, and Julia were troopers helping to get me to the plan.  All the while, I knew something was very wrong, but my brain kept telling me that I just needed to get on the plane. We made it through security and at the end of the line I got sick all over myself.  Harper had to basically help me change my clothes in the bathroom because I couldn’t even get up. nothing like laying on another bathroom floor with your 13-year-old trying to care for you, but again I couldn't comprehend what was happening.  I somehow was able to get on a plane and walk to the back. The back row was open, so I asked the flight attendant if I could sit in that row, which she was able to let me do. She brought me a stack of puke bags, which I used many we were ready to go. 

My 1st BP over 100!  I was in the 60's

We made it back to Minnesota and Missy got me home safe and sound! She was a lifesaver on this trip. Literally, she helped to keep me alive, which I didn’t know at that point. It is unbelievable and when we both realized the severity of my condition we couldn't believe it.  I am glad we didn't realize when it was happening, because it would have been even more terrifying!  Dave wanted to take me into the hospital right away, but I basically passed out on our bed and just couldn’t move. I slept terribly and couldn't get comfortable which I later found out was due to my body shutting down.  In the morning, Dave told me, "You’re not going to like this" and before he finished the sentence, I said it take me to the hospital.

We spent the day in the ER in Austin getting lots of fluids pushed and running many different labs. By midafternoon, they told me I was going to be admitted which in my mind still seemed crazy. I kept thinking just give me the fluids and send me home. Your brain is so strange when your body is giving up.  By late afternoon they told me I would be transferred by ambulance to Methodist Hospital in Rochester where I would continue to receive treatment and be monitored. I even asked if Dave could just take me because again, I didn’t realize the extent of what was going on. When I arrived in Rochester, they continue to push fluids, while I basically laid there.  I couldn't really move. I was struggling a lot even though I was getting hydrated.  Dave would tell you he really wasn't seeing any improvement and was getting more and more nervous. 

Lifesaver 1, Missy! 

I had zero energy, but for some reason at the end of the day I picked up my phone. There were so many messages I couldn’t even believe it, but one that Dave noticed was from my friend Breanna. This is where things got interesting, well maybe I should say more interesting! We shared with her that I was in the hospital and not doing well. Breanna is someone I met early on in my journey who is a breast cancer survivor. Woo Hoo! She had the same treatments as me and many of the same struggles, so I have leaned on her a lot during my journey. I didn’t realize how much that would come through for me on Wednesday. I fell asleep and Wednesday got up and saw that she had messaged again.  She asked what my symptoms were, and I told her what was happening. and she told me to go into my portal and check a specific blood test. I was quite out of it, but we were able to get to the lab and found that it was very out of range. She told me to immediately get the doctor.  I shared the information with the doctor, who did not really appreciate me sharing my thoughts or suggestions. Note to self: fight for yourself and ask questions about your health! This doctor was preparing to run more tests and was not happy I suggested an idea. 

My lifesaver, Breanna! 

In the end, he poked his head back in the room and said he was consulting with oncology and endocrinology about the lab because it was of concern.  In less than 15 minutes there were two endocrinologists in my room.  Doctors don’t come that quickly for no reason. I knew it was serious. The room then filled with oncology doctors as well.  They explained to me that I was in complete adrenal failure and needed lifesaving meds quickly. I was terrified, but everything was moving so fast that I didn't know what to do but trust them.  I did share with them about the main doctor, needless to say, he did not return to my team.  THANK GOODNESS!  Remember that friend, Breanna?  She saved my life by telling me to look at that lab!  That is not an exaggeration.  She gave me the info get me to check the lab and get it to my doctor.  My family and I are eternally grateful!  

Fab nurses! 

Over the next 24 hours I started to slowly feel better.  I was getting some energy and could actually start to understand what was happening.  They still did MRI's and other labs, but I was headed in the right direction. Then my body went crazy with the steroids they had to put me on.   I had energy that was like my post chemo self!  It felt so good! I couldn't sleep and felt like I could run a marathon!  It is amazing what 24 hours can do with the correct care! 

Fab nurses! 

From Wednesday to Saturday evening, I worked my best to strengthen my body.  I drank so much apple juice I thought I would float!  I knew this would help with calories and they needed me to gain some weight.  I also pushed myself to eat even though it was really not something I was interested in.  I just wanted to go home!  My team worked to get my body ready to transition home and to be on the correct dose of medication as my adrenal glands will no longer function.  It is really hard to hear that you will be on medication for life because your chemo killed off part of your body and that you now have a new disease: Primary Adrenal Insufficiency (Addison's Disease).  At least I know the chemo is killing things, hopefully the cancer too! 

Best Nurses!

Once I finally realized the severity of my situation I didn’t want to go home.  Being told if you hadn’t come in when you did, you probably wouldn’t have made it sure has a way of pulling you to reality quickly. The hospital was safe, and I knew that if things went downhill, they would be there to help. I was terrified!  My amazing nurses and doctors assured me that I was ready.  It was so good to get home to my family, and we are adjusting to our new normal.  Dave and my kids are helping me to make sure I don't miss a dose as that would send me right back to the hospital! Yikes!!  Still more learning to come!  For now, I know what to watch for and since I know what dying feels like, I know the signs to be aware of as do those around me.  I have my crisis plan and lifesaving dose of meds for any emergencies! 

My awesome oncologist! 

I met with my oncologist on Monday for over an hour and felt so great about the care that I will continue to have in the coming months and years.  I apologized to her for not going into the emergency room in Phoenix and she assured me that I would have had no way of knowing because my body was shutting down and my brain could not process. This is so true! I’m just glad that I didn’t realize that, even though I just thought I was dying, I was actually in the process. Now, some of you know me might think I am being dramatic. However, this is truly what happened and the information that was shared with me.

I hope that my experience allows others to be educated, take control of their healthcare and ask questions, and to trust your body when you can!

So happy to be alive this week. A medical episode like I had last week has a way of giving someone a huge perspective shift. I am forever grateful to my friends, Missy and Breanna, my family and so many friends, as well as all the staff, nurses, and doctors at Mayo!  

Remember to find positives each day! Sometimes it can be really dark, like really, really dark, but in the end, there is always some light.  Thank goodness I am here to keep that in mind! 

#myjourney #breastcancerawareness #earlydetection

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