I won’t lie to you friends, I have been having a tough couple of weeks. Part physical, part emotional, there has been a fair bit of annoyances/disappointments to process.
Yesterday I went in for my weekly treatment. This week was the Taxol/Avastin week which lends itself to a slightly longer treatment. My normal chemo nurse, Rosa, has been on vacation in Portugal (lucky!) so I was assigned a different nurse. Honestly, I don’t remember seeing this woman before. From the beginning I had the feeling the experience might be a little “off”. She came in looking a somewhat frazzled and introduced herself, asked if I had a port, and left to gather the materials needed to access my port. She accessed me, hung a bag of saline…so far so good.
Next, “We’ll get you started with the saline until pharmacy is ready with your chemo.” I found this to be a strange statement since normally the saline is hung at the same time as my pre-drugs (Benadryl, steroid, etc.). I figured she had misspoke and was just waiting on the pre-drugs to be ready. I was mistaken. It wasn’t until an HOUR later when I caught the eye of another staff member and whispered: “um, am I supposed to be getting pre-drugs?” As soon as she left to inquire my nurse for the day returned with one bag of chemo. I held back my frustration and politely inquired: “No pre-drugs today?” She responded that she thought I was only getting Avastin. I was polite but on the inside I was pretty annoyed. At this point I was already there for two hours and I knew that the pre-drugs themselves would take about an hour not to mention the Taxol and Avastin to follow.
To be fair, she is not my normal nurse, perhaps she was busy and having a day. She was very nice regardless. I should probably give her the benefit of the doubt and chalk it up to an oversight. But I was in a mood and really didn’t want to be there. Plus had I not spoken up I would have only received half of my treatment! Always. Speak. Up.
My frustration was exacerbated by some crummy news that I received partway through the morning. My CA-125 came back and it had increased from 625 to 719. The impression that I got from Sheila is that it is not the news we want to hear, but is still considered “stable” so my doctor is staying the course. Basically my doctor and Sheila looked at each other, frowned, said: “Mehhh…ok”.
I have mixed feelings about this news:
1.) I have had this disease long enough to know that there are many factors that can influence the CA-125 and must take into accounting being sick recently, being on an antibiotic, etc. Who knows why it increased.
2.) When news like this comes up, my first instinct it to turn inward and start blaming myself to choices I made. “Why did I have that glass of wine?” “Why didn’t I work out?” “Why didn’t I eat healthier?” UGH. You can’t beat yourself up, but I can’t help but think I could have made better choices whether my numbers improved or not.
3.) No one likes to back pedal. For the efforts that I’m putting in, it plain sucks to not even see a little progress this time around.
Last week I also wrote about a book that I purchased (The End of Your Life Book Club) because I accidentally nose bled into it at the book store. Thank goodness I did! It has been remarkably insightful.
The author, Will Schwalbe talks about perspective and this passage is an important reminder in my effort to reframe this news. The line that jumped out to me most was “…good news and bad news are often relative to your expectations, not anything absolute.” Fair point. I am disappointed with my CA-125 because my expectation was that the efforts that we are putting forth warranted a decrease. That is simply not the case.
There was another passage that I wanted to share about the process being out of one’s control. Making it through comes down to controlling what you can control. Those are the things that make you happy. Period.
So in light of mourning a recent loss, my fingernails turning yellow and lifting, CA-125 increasing, feeling more run down, etc. I must make choices that will bring some sunshine into my life that include but are not limited to:
- Spending quality time with the one I love
- Losing myself in a book (preferably outdoors whenever possible)
- Saying no and not feeling guilty when I’m simply not feeling up to it
- Saying YES to surrounding myself with those that have positive energy as much as I can without feeling run ragged
- Being goofy even when shit just plain sucks
I don’t know, my friends. Things aren’t the easiest right now but they sure have been a lot worse. I am confident that in a few days or weeks I will snap back into my normal self but for now I’m just going to have to process what is in front of me and do my best.
Thank goodness for great family, friends, colleagues, social workers, kind strangers, good coffee, and ice cream (always ice cream).
You are an inspiration! Thank you!
You are too kind! Thank you for reading an caring 🙂
Honestly, when I got a new nurse I often just told them what to do. Always speak up!
I should have spoken up like 45 minutes before I did but I wanted to give her the benefit of the doubt. LE SIGH. Can’t wait for Rosa to come back next week. (Silver lining, I got to see ALL of Law and Order SVU before falling asleep haha)
Yeah, I was once that kind hearted soul as well. I even let someone do their first ever bone marrow biopsy on me! But that shit ends quickly when you get another person doing their first biopsy on you lol.
Jess, thank you for sharing this. It helps me understand what you are going through! I am sorry that this illness is causing so much anxiety and pain. you are too good for this. I pray for you every night that you will continue to win this fight! Love you!
Thank you Beth! I love you too. I appreciate your kindness, always.
Sending loads of positive thoughts your way! As always, thank you for your honesty…..and your sense of humor!
Thank you Wendy 🙂 Thank you so much for your never-ending wave of support and love
And look at you putting the positive spin on it anyway! And I’m sorry it wasn’t the day you hoped. Just look at you being goofy with the mustache, rain cloud and cooler ~ we love you lady .. we’ll all prayer for a better day and the return of your regulars to help you through it and don’t just speak .. scream out loud “that’s not right”… you deserve to be heard. xoxo HUGS, HUGS, HUGS to surround you this day.
BIG HUGS! Thank you Fran 🙂
Your mention of love of ice cream….I too love it! I had my usual (and so not needed) Dairy Queen vanilla cone the other day and it was not so good. What are they doing to it? It was not the usual light, smooth, creamy texture I’ve been spoiled on, the kind that coats your tongue…it was more like an iced milk. Yuck! But, not one to give in, I will for sure try another. Some days you just have to go with the flow. To you and ice cream on any day.
Jess, great thoughts in the midst of some tough times…i think i’ll get that book – but if I don’t, your writing suffices.
Sorry about that nurse…but did you look like that with mustache and all? – ha – no wonder she was flustered – glad you spoke up and thanks for that reminder.
and I guess that is it -‘ good and bad news are relative to our expectations not absolute’.. seeing things from different perspectives….I think of Ganesh, the Indian Elephant God who “dances on obstacles”…
Continued thoughts and prayers and thanks for writing – with love, deborah
Jess- I’m sorry that that an already difficult situation had to
be worse than expected for you- the epitome of unfairness.
I find that whenever I wish things were different than they are it produces so much anxiety – which happens more often than I want to admit. That book seems inspiring for sure. Jess, my prayer for you is that you will continue to control your own happiness -a God- given right, and that your favorite nurse (we ‘ve all had them) will come back refreshed just for you! 💗Mary
Different people are always coming into your life. Glad you have a great boyfriend, without the, “mustache!”
Jess — Hanging with you and certainly hear you! Loving your ending remarks and the pictures —- You’re a beautiful soul and have a beautiful soul mate —- enjoy the ice cream together —–! Much love and positive thoughts of healing continue for you!
Bummer few weeks Jess. Don’t beat yourself up about choices. You are living your life with gusto despite this very trying disease. THAT is a wonderful choice! My prayer is that the CA125 turns the other way again. Not sure this helps but a friend whose number went up again found out after a PET scan that she had pneumonia! She was so busy living life in between the crap that she didn’t realize she was sick! Number went back down again. I’m praying that your recently being sick is the culprit.
You are certainly your own advocate which is so inspiring.
I’m in awe of you. All my love ❤
I’m seriously in awe of you. All my love, Jess ❤