Hi friends! It’s been a minute since I blogged so I wanted to update everyone on the latest. (And there’s another new update from today at the end of this blog). I’m currently on the “maintenance chemo” part of the clinical trial. The first part of the clinical trial was six cycles with three drugs (1. Cisplatin- Chemo 2. Opdivo- Immunotherapy, and 3. Romidespin- Chemo). The first 6 cycles I had three infusion days per cycle (on day 1, day 2, and day 9) then a Nulasta shot on day 10. The cycles are always 21 days long.
The second part of the trial which I’m on now (I started cycle 9 last week) is just with two drugs (1. Opdivo- Immunotherapy and 2. Romidespin- Chemo). I’ll try to sum up the main things that we’re grappling with- and by no means am I complaining….but a lot of friends want to know, and it’s easier to explain it once 🙂 So, the main thing I’m asking for prayers about right now is that the maintenance therapy is WORKING. I haven’t had scans since being off the Cisplatin. My next scans are coming up soon on March 23rd. I pray every day multiple times a day that this treatment will work….or that God will just give me a miracle and remove all of the cancer cells from my body. I know I just have to trust God’s plan for me. As a human being, it’s hard not to be worried when scan time comes around. I feel like these scans are such a big deal. This maintenance therapy is SO much more doable for me long term. I’m only sick for 2-3 days after treatment. But, even being sick, I can still work and function. I feel SO much better now than I did on the cisplatin. (I was throwing up a lot on that). NOT the most pleasant thing I’ve experienced 😉
In a word, this maintenance therapy feels like FREEDOM by comparison. A way to enjoy life and be somewhat normal. In an ideal world, this maintenance chemo will keep the cancer where it is now without progression, or even better….it will get smaller over time. What a blessing that would be! Absent a miracle (which is totally possible in God’s capable hands)…..I do need to buy more time. They don’t have a “cure” for Stage IV triple negative breast cancer or targeted hormone therapies for me like the other types of breast cancer (that are driven by hormones). We need more time so that someone CAN find a cure. I always tell myself that just because there isn’t a cure TODAY it doesn’t mean that there won’t be a cure a year or two from now. I just need faith in God and the courage to keep putting one foot in front of the other. Speaking of courage, I have a new book to add to my Cancer Club’s Book Club Blog💜
On the subject of gifts, my amazing friends (and believe it or not ….even some people I’ve never met) have been asking what they can send me (care packages, etc.) I’ve said this before, but having people pray for me is so amazing….and one of the best gifts out there. I believe in the power of prayer- and the power of God to provide healing. That being said, for those sweet people that insist….I do have an Amazon wish list. I don’t link it to my blog very often…but here it is😉
The Amazon Wish List has been such a blessing with me having all of my treatments out of town. (It’s also been helpful because we are living in Kansas City about half of the time and started with an empty apartment and a blow up mattress). Don’t worry we have a bed now!😁
In other news, I filmed a video for LSU gymnastics for their cancer awareness meet. It was so nice that they asked me to participate. Anyone who knows me….knows I LOVE LSU gymnastics 😉 This isn’t important and I probably shouldn’t blog about it, but I would like to note for the record that this quite possibly THE single most unflattering video of me….ever😅 I’m at a really awkward stage with my hair at the moment….and on top of that, the day we filmed this video I was feeling terrible. I sent it to my friend (who literally can’t lie to me) and she couldn’t help but laugh. She did soften the blow by saying “you don’t normally look like that”. Nothing like having an unflattering moment on a JUMBOTRON! I realize that isn’t the point….but when I first saw this video my reaction was “oh boy!” (I say that quite a bit…..it fits so many occasions.) Regardless, it was so nice to be chosen and what I look like on the outside isn’t why I’m on this earth, and not why my friends and family love me. So here it is, for posterity.
In other news, since my last blog, there was some crazy winter weather in the south! While that was going on, we were in Kansas City which was having it’s own winter moment. As a result, I went for my first ride on a “coaster” (different than a sled) and made my first snow angel. It was a fun way to get outside and be active without having to come into contact with anyone.
It’s worth mentioning that Mark is no amateur when it comes to winter activities. He grew up in West Chester, PA (right outside of Philadelphia) so he is well versed in sledding and such. This year Mark’s mom sent us a picture of Mark sledding for the first time…..then followed up with a video of Mark’s dad on the SAME sled later that day. I know this isn’t exactly cancer related….but it IS pretty cute!
By the time we came back to Kansas City for this trip, the snow had melted and all of sudden it felt like spring. After chemo last week I felt better by the weekend and we were able to enjoy the warm weather and explore the city on our bikes. On Saturday and Sunday we covered 17 miles total and I felt great! (Thank you Lord!)
That’s about it for now. I’m waiting to see what my ANC will be tomorrow. My oncologist told me they suspect it will be too low for chemo tomorrow based on what it was last week. So we will need to wait and see if they want to keep me a couple of extra days to see my ANC will go up, or if they will send me home and dose reduce for the next cycle. I was told they don’t dose reduce in the middle of a cycle (probably because of the clinical trial procedure if I had to guess). Anyway! If you’re still reading- thank you…..this was a long one 😉
As always , keep those prayers coming!
⭐️Holly Hollis Stars⭐️
Chemo UPDATE! I went to get my labs this morning and my ANC was only at 0.8 (they need to be 0.9-1.0 to have chemo). The doctors decided to redraw and “respin” my labs a second time just in case I was able to get up to 0.9. I sat in my little chemo cubicle and prayed and prayed. Much to my delight, the nurse bounced in and said “your ANC is up to 1.0 you’re getting chemo today” Praise. The. Lord! For those asking, the next items on the prayer list are:
1. Good scans on March 23rd🙏
2. That there will be positive research involving my immunotherapy and that (eventually) I will be able to get the COVID-19 vaccine.