At the beginning of May, I switched from AC chemotherapy to Taxol for the second half of my chemotherapy course. I had prepared and talked with Doctor about side effects and the potential for things that could happen. I felt less worried about most of the side effects of the Taxol, but I was feeling worried about the potential for neuropathy. I had some neuropathy when I had the AC chemo so we had made a plan for cold therapy to help with prevention during Taxol treatment.
When I went in for the Taxol treatment I felt anxious but optimistic. Nurse prepared the ice for the cold therapy and we made a plan for how things would go. Because it was a new medication we took the first round of this new set of medications slowly. As I sat with my feet and hands in buckets of ice for an hour I realized that they were not nearly as painful or worrisome as I had originally thought it would be. They hurt from the cold but not much and with a blanket on my lap I was able to feel warm everywhere else and only cold under the ice.
With the Taxol treatment completed, I was optimistic that this would all work out ok. We went home and I spent what time I could with the kids before they all had to leave. There was a marching camp for one, Girl Scout bridging ceremonies for others, honors society induction for one and a choir concert for everyone to attend. This was the kind of day I normally plan in detail. I figure out how we will get everyone where they need to be and when, I coordinate with them for who needs rides from people outside of our home and make a plan to be in the right places at the right time. This day, instead of doing any of that, I helped to make sure they all had a plan in place and sent them out the door with a kiss and best wishes.
Knowing that they were all doing the end of the school year activities and demonstrating their achievements it was hard for me to send them off without going too. Maybe I could have snuck in or found a way, but it didn't feel safe with just having had chemo that morning. My heart felt a little jealous that Husband was there taking photos and giving hugs and applause to each child. I cried as I sat on my bed and tried to figure out if there was anything at all that I could do.
The next day, Friends came over and were helping to work on painting our home remodel. I put on my mask and sat to the side to spend some time talking to them for a bit. It was nice to feel like I am still a person. I felt better than I thought I would that morning and I was hopeful that Taxol wouldn't be so bad.
By Friday afternoon, I felt like I was having some bad allergies or a bit of asthma. Saturday morning I woke up and got winded walking the 15 feet to the bathroom. From there I began a fever, chills and body aches. I was told to watch and wait, I took the prescribed antibiotics and acetaminophen for the fever and waited for my body to feel better.
I didn't feel super sick, it was really focused on my lungs. I felt the fever and chills as my temperature would spike. I went in 3 days the next week for fluids and more tests to try and determine what was causing me to feel so awful. By the following week I was no better off.
My breathing was labored, I was having a hard time getting in a full breath. My heartrate was sitting at 120 laying down and would spike with movement. I would move and it would cause lots of coughing. My lungs felt burned - like when you go for a run when it's cold outside, but it didn't ever stop. If I held still I was stable, but any movement started a coughing fit that nothing was working to help.
I was finally admitted to the hospital and after 11 days of fever and cough I found myself sitting in a hospital bed being tested for even more while they sent oxygen and medication my way. At the worst I was on 4L of oxygen trying to keep my sa
ts up in the 90s. I was blessed with an amazing team of nurses who were oh so good to me in all the ways that I needed. They laughed and cried with me, they commiserated over the next test, poke, prod or effort. They asked to see photos of my children and family. Husband came, Friends came, and Religious leaders came. I was definitely being cared for in all of the best ways anyone could but it took time to decide that my damaged lungs, sepsis and fever were being caused by the Taxol.
I was in the hospital for a week. Between the being sick at home for 11 days and the week in the hospital, I missed every single end of year activity for all of my kids. In the big picture it isn't much and they all survived, but it still stings that I wasn't able to be there when my heart and brain were perfectly capable of wishing it to be so. The kids made pictures and signs for my hospital room. We never let them come visit though, mostly because I didn't want to scare them with all of the machines I was hooked up to. I video called and only showed my face with the oxygen cannula and that was enough to make some of them worry a lot more than they already were - I promised them that I would be alright and be coming home soon.
Once the Taxol was found to be the culprit Doctors switched medications, did a blood transfusion, and I started to feel much better pretty quickly. Within hours of them giving the treatments I started to notice a difference in my breathing and how well I was feeling overall. I went from barely being able to transfer from the bed into a wheelchair to walking the halls with the physical therapist in a very short amount of time. I went from people wondering if I was at death's door to being released and sent home with a prescription and new set of follow up appointments. The pink came back to my cheeks and the pallor of death was swept away.
All along the way I felt reassured that it would all work out and that I would not in fact die no matter what things looked like in the moment. I felt comforted and loved, I felt at peace. The hardest part was waiting for the answer that Doctors were working so very hard to find. I am so thankful for the blessing of being able to breathe without assistance and for the ability to receive the treatment needed to heal me.
Since being released from the hospital I am feeling much better, I will tell you more about what I have been up to later. In the meantime, God is good. He is mindful of each of us. Thanks to Him and each of you for being on this journey with me.
