Taxol Treatment #6: Frustrating Side Effects and Hope

 September 23, 2020

So here I sit in the chemotherapy room. It’s a big place with 7 lazy boy chairs, each one with a patient plugged in to an IV tube, some through their arms, some of us through ports that have been surgically placed. I am very grateful for my port as it saves a lot of the pain of being poked in the arm each time. It is a great invention. And the reclining chairs are a nice to touch as I usually have to sit here for 3 hours each time. I took this picture of the room last week when it was not busy. 

Each session begins with some pre-meds to treat for side effects and reactions. Then the real stuff, the Taxol, takes an hour to drip in. I’m usually here a total of 3 hours. I do what writing I can at the beginning because during the Taxol treatment I have to have my hands and feet on ice. The ice is to help prevent nerve damage from the Taxol and since I already have some numbness in my toes and fingers, I am inclined to do what I can to help prevent more.

This is Taxol treatment #6 out of 12, so I am used to the routine. So many people wonder how I am on the day of treatment and I have to say that the day of treatment is usually pretty comfortable and smooth. It isn’t until I am home, about 4 hours later, that I start to get a fuzzy, tingling feeling in my face and neck. That feeling travels down my back and arms and lasts until I have fallen asleep. It is always gone by the time I wake up the next morning, for which I am grateful. It’s not a painful experience but it is very annoying….so I am glad it only lasts about 5  or 6 hours.

Then it is a couple days later that the fatigue kicks in and that takes 2 or 3 days to ride out. Whew! In addition, I often have digestive issues on these fatiguing days. My taste came back and my appetite is better but with the digestive issues I still have to very careful what I eat. I also have had rash on my arms and legs for 8 to 10 weeks now. It got better for awhile and then worse again. The rash feels like a sunburn. Basically it feels to me like there isn’t any part of my body that I get to be in charge of. Chemotherapy is running the show. Suffice it to say, I’m very tired of this routine but my tumor seems to be shrinking so I hope this is all worth it.

So how am I? That depends on what day you ask. Some days are better and I have a little kick of energy. On those days it feels good to dig into life a little more and I find hope. Then I have days where I just lay on the couch and try to distract myself from the discomfort. On those days I’m not even motivated to ask to talk to someone. So it depends on what day you ask.

So where do I draw my energy from to keep going? Where do I find hope?

I do have some hope now in September. I am back to working teaching distance students as part of the spiritual direction training program at Christos Center for Spiritual Formation called Tending  the Holy. This is the beginning of my 9^th year (my 5^th group) working with distance students in Tending the Holy! I LOVE this work of coaching and companioning those who are stepping into this practice of spiritual direction. It also looks like I might get to teach a small group of students at Bethel College, the same thing. Cool! This work calls me to my best and higher self and that is the gift of it. I draw closer to the Spirit and to my true self as I show up for those who want to learn. What a treat!

Also, I have found tremendous hope and inspiration from the seasonal changing colors on the trees in my neighborhood. These colors inspire me to pay attention and the way that they change causes me to ask how change happens in me and how we might allow God to change us. If you want to see my FALL PHOTO ALBUM, CLICK HERE

And then I take hope from you my friends, those who are praying for me, those who are singing (at a safe distance), those who are doing their part to help heal this world and the people in it. You give me hope. Thank you! I so appreciate the deep friendships I have that remind me of my true self, my best self. Chemo can’t take that away from me! I am so grateful.

So that’s my update on the day of my 6^th Taxol treatment (out of 12 total). I had 4 AC Treatments before the Taxol so I’ve been at this since the end of June and will finish the first week of November. After that I will be re-scanned and tested and see what is next.

Thanks for reading! Thanks for praying! Thanks for allowing yourself to think of our friendship! Thanks for all you do to bring LOVE into the world!

Love to you all, Jules