The first of 12 Taxol treatments had happened on a Monday. The first two days after infusion were great…maybe I was still all hopped up on the steroids, but I felt good. Until I didn’t.
I got super achy, would be freezing cold and then hot, had terrible headaches and just flat out EXHAUSTED! Ugh, when would the exhaustion ever end?
spoiler alert: one year later and it still rears it’s ugly head
I remember later in the week my mom running me a hot bath and just rubbing my back until I could get back in bed. It was lasting for days upon days which was such a surprise to me. I really thought I would be tired for a couple of days and then muster up the energy to stick to the daily routine we had.
But every night I would go back and forth between freezing and sweating…sweating so profusely that I would have to change clothes at least twice during the night. Was this the new chemo induced menopause? Is this what it feels like? Or was there more to it?
Friday morning I was no better.
I was literally freezing while it was over 90 degrees outside. My temperature was up to 102.4. So I sat in a hot bath trying to get warm while Kaleb called the oncology office and get me in as soon as possible.
While in the office, it was more freezing but yet almost feeling like I was so hot I needed air. I felt like my chest was super tight…it was a crazy mess! The did my labs and took my vitals. But I kept getting light headed and feeling like I was going to get sick or pass out. Although my labs turned out to be ok, my blood pressure dropped to 90/60 which is WAY low for me! Not only that, but my heart rate was hanging out around 110. Something was definitely not right..
They decided I was probably dehydrated from losing so much fluid through all of my sweating so I got some fluids and an antibiotic. They also did a chest X-ray just to be safe and it all came back clear.
That weekend was more of the same…
The high fever, chills, sweating, dry cough, tight chest and shallow breathing. It was like my body was running a race but I wasn’t going anywhere! I got put on a steroid pack and cough syrup to try to give me some relief.
My chemo for that next Monday got pushed back but I still went in for fluids. The fever didn’t come back that WHOLE day and I felt like I had just hit the lottery with that 😉 I didn’t feel great, but I felt better and was SO thankful to not have a fever anymore and just knew it would get better as the steroids did their job. It was just good to get a break from chemo so that my body could heal and gain some strength so that we could get back to the fight!!!
I remember having to miss a softball tournament that my daughter was in.
I was devastated. When this disease took time from my kids is when it would feel REALLY unfair that we were having to battle this. It would tug at my heart so much and I just would hope and pray that the kids weren’t as heartbroken over those moments as I was.
“Being sick on top of everything else lately sure has made it tough. I mean this whole thing is hard enough but then add to it and it’s ridiculous. It makes it hard for me to pray, hard for me to keep the faith, hard for me to stay positive. When I get so down physically, it start to get to me mentally. I can tell I ’m getting better though because my headspace is clearing”*
The fever came back with a vengeance one day later.
I was literally out of breath just getting up to walk to the bathroom. I would start cough uncontrollably trying to grasp air. My body would get crazy chills while also burning up. The next day was our town’s Homecoming Parade…which I had gone to with my kids every single year since 2009.
But not this year. I would have to send my kids with friends and I would stay home, in bed. Resting. Coughing. Freezing. Sweating. And miserable.
By Thursday, my husband had enough.
He told me he was either calling the doctor or taking me to the ER but this was enough. And he was right. My oncologist had me come right in and they started trying to figure out just what exactly was wrong.
Was it an infection with my port? Was their an infection in my blood stream? Did I have pneumonia? What in the world was going on? When they couldn’t determine, I got sent to the ER. There they would do more blood work and more tests and imaging to try to figure this out. Nothing was showing up, and they couldn’t figure it out.
In the meantime, I felt like I was suffocating.
Every time I would get into a coughing spell I would feel like someone was holding my throat and I couldn’t breathe. They gave me nasal oxygen to try to help but it did nothing. Once they got me to my own room and saw me have an attack, they finally gave me an oxygen mask. AHHHHHHHH, sweet relief. It felt SO good to be able to just breathe!!! I wanted to take huge inhales but knew that would send me into more coughing fits, so I just laid there and tried to breathe normally. It felt amazing.
The next several days would be more of the same. Multiple tests, chest X-ray, chest CT scan, blood cultures, etc. I got to add infectious disease and pulmonology to my medical team, lol! I was pretty incoherent while there. My husband and my friend and my mom would take turns staying with me. There was always someone by my bedside to help me get to and from the bathroom and hook me up to all of the machines.
I was admitted on a Thursday and after no improvement, they did a bronchoscopy on Monday.
That’s where they stick a tube down into the lungs to get tissue samples to test and rinse out the area. It terrified me. I couldn’t breathe without oxygen so how was I supposed to make it through a procedure with something down my throat? I was so scared. And I remember saying goodbye to Kaleb as they rolled me off to the OR and talking to the nurses. Told them that I had 3 babies to get home to so I HAD to make it through this procedure. I thought I was going to suffocate on the operating table. I cried to the nurses and the pulmonologist doing my procedure, begged them to let me live…and they told me with tears in their eyes that I was going to make it through this.
They did the procedure and started me on high dose steroids via my IV…by Monday night I was already better and even able to go without oxygen for short stints. My dad had come into town…Kaleb had called him and told him I wasn’t getting any better, so he was there immediately.
My final diagnosis was pneumonitis…
It was either from a virus hanging around (remember my youngest having Hand Foot and Mouth?) or a reaction to Taxol. They couldn’t be 100% on either one. I had never heard of pneumonitis, but it’s different from pneumonia. Pneumonia is when the lungs and bronchial tubes are filled with fluid. Pneumonitis is inflammation of the bronchial pathways and lungs. So THAT is why I felt as if I was suffocating…because I was.
I was told that if I wanted to go home, I had to walk and I had to get off oxygen, so that became my goal!!! We started walking several times a day and eventually I was able to ditch the oxygen machine.
I remember telling someone that I was just having a hard time knowing how to pray, I was so weak and fatigued and just didn’t know how to pray. The next day, I woke up to a sticky note on my bible with Romans 8:26 listed on it…”and the Holy Spirit helps us in our weakness. For example, we don’t know what God wants us to pray for, but the Holy Spirit prays for us with groaning that cannot be expressed in words” Even when we don’t know the right words to pray, the Holy Spirit prays with and for us. What an INCREDIBLE reminder while I fought to heal my body and my soul.
Later, I learned more about those days from friends and family.
I tried to piece it all together, but was like I’d been on a drunk bender for a week, loll! Between lack of oxygen to my brain and so much medication, I was very out of it for that time at the hospital. I had no idea how bad I really was until later…in fact, as I relive this all, I am still coming to realize how serious those days and weeks were while we fought.
They finally discharged me that week! I remember walking out into the fresh air with Kaleb. I closed my eyes and felt the fresh air on my face. Tears came. It was the most beautiful, crisp air I had ever felt in my life. The sky was a striking blue. And I was going home to my family.
Of course, so much amazing goodness came out of that daunting trial
I can’t ever repay all the people who helped us. From my parents and friends staying with me in the hospital, to meals being delivered to my family at home, to all the help with the kids, to the nurses who would pray with me and encourage me, to friends who would set up Amazon Fire in my hospital room to the flowers we received, to the van full of CostCo goods that were delivered to my house…and SO much more!!!!
As thankful as I was to have been released and to get to go home, there was a lot of changes that I had to go through. My oncologist changed my treatments plan. Since she couldn’t be 100% sure that my reaction wasn’t due to the Taxol chemo, she didn’t want me to continue with it. She didn’t want to take the chance of reintroducing me to it and having something happen again. So the new plan was to get my surgery (mastectomy) done as soon as possible. She wasn’t sure if we would continue chemo or not, she wanted me to get another PET scan to see how my tumors reacted to the original chemo first.
The following days were full of fear, tears, confusion, and so many more emotions…
*from my personal journal