This blog post is the 29th in a series about my (and twin sister’s) preventative breast cancer screening journey that began when we were 30 years old in July 2019. Here is a list of all of the posts written about our journey at Mayo Clinic’s Breast Clinic in Rochester, Minnesota, to date. To keep tabs on new posts, sign up for the “A Daily Miracle” email list at this link.
It’s been an exciting week! My twin sister has now completed 6 of her 14 T-DM1 infusions, so she’s 42.9% of the way done with her post-operative chemotherapy regimen! She did great at her 6th infusion! Thanks again to to some healthy eating–she and her husband have been intentional about eating lots of leafy greens and high-protein/iron foods every week–and exercising, she kept her numbers up so she could go ahead with her 6th infusion on time (praise the Lord!!)! Also, one of her favorite nurses was working and she didn’t have any reactions to any of the drugs! We are all SO thankful that she continues to feel well the week after her infusion, with little to no side effects. Thank you SO much for your continued prayers for joy, strength, and healing! 🙂
In addition to a great 6th chemotherapy infusion, my twin sister had an echocardiogram to check on her heart health, which she has every three months that she’s going through her chemotherapy regimen because the chemo she’s on can be hard on your heart. Everything looks good with her heart so far!
She also had a second opinion appointment with a corneal specialist at Mayo Clinic this past Thursday, September 3rd.
AND, all of this is happening while she and her husband are raising their baby Boston Terrier puppy, “Gizmo!” (He has his own Instagram channel @gimme_mo_gizmo which you should follow if you want to see lots and lots of the cutest puppy ever photos.) I promise to include lots and lots of puppy photos in this blog post!
A second opinion on her corneal cysts from a Mayo Clinic corneal specialist
“I see we have a very interesting thing happening to your corneas!,” the specialist announced as he headed into my sister’s exam room at Mayo Clinic.
It turns out that my twin sister’s corneal cysts are “very rare.” Given she also came down with ovarian hyperstimulation syndrome when she went through fertility treatments last fall–something that also impacts less than 1% of the fertility clinic population–I guess we shouldn’t be too surprised about how rare her condition is!
Anyway: The Mayo Clinic corneal specialist agreed with the specialist my twin sister has been seeing in the city that the cysts causing blurred vision on my sister’s corneas are “almost certainly” related to her taking Tamoxifen on a daily basis. However, he said “this is NOT a permanent issue,” and the corneal cysts will go away when she’s finished taking Tamoxifen in 5 years!
The Mayo corneal specialist also said that while it is unusual for Tamoxifen to cause side effects in the eye, when they do usually see it, it’s in the retina. He said the cornea is a “much better place to have cysts than the retina,” and that it’s good that the cysts are around the outside of her corneas because that means the center of my sister’s eyes are spared!
While, unfortunately, he doesn’t know of a “cure” to the problem–for example, if they went in with laser surgery to remove the cysts, they would just come back–he agreed that lubricating eye drops are a good idea to continue at this time to see if those help the cysts clear up at all. That’s because both Tamoxifen and TDM1 can cause dryness of the eyes, so eye drops aim to increase tear production and help with that problem. As winter arrives, he wants her to increase the usage of those drops as needed since the air will become more dry.
In the meantime, he wants to see her back in 2-3 months to make sure her eyes are staying the same or getting better, and wants her wearing glasses that whole time. He said that large, hard contact lenses may be the best option for her eyesight going forward because soft contact lenses carry the risk of causing small abrasions that could become infected while large hard lenses don’t rest on the cornea but rather around it. He said they could explore that option further down the road.
He also got in touch with my sister’s oncologist at Mayo and they agreed they will follow her as a “case study” for the next 5 years!
Trusting God one day at a time
This past week I was gifted a quilt from my church’s quilting ministry in honor of my breast cancer journey! My twin sister received one during her chemotherapy regimen earlier this year, and we are grateful for reminders like these of God’s presence in the midst of anxiety-ridden trials! (We also received beautiful quilts made and delivered with love by our Aunt Jeanne last December. Those are pictured in this blog post I wrote right after my double mastectomy. 🙂)
The inscription on the quilt from my church’s quilting ministry reads from Psalm 27:14: “Wait for the Lord, be of good courage, and He shall strengthen your heart; Wait, I say on the Lord.”
I love that verse. It speaks right to my heart–because I hate waiting. But I know it’s what God calls us to do (sometimes). I’m still learning and, again!, am so thankful for these little reminders of God’s faithfulness! <3
Next steps
My twin sister has her seventh infusion of T-DM1 (HALFWAY THERE!!!) on Friday, September 25th. Then, sometime in December, I will have my one-year survivorship consultation at the Mayo Clinic Breast Clinic in Rochester, Minnesota, and my baby sister will go in for another preventative baseline MRI! We’ll see if we can schedule our appointments on the same day 🙂
Thank you all for your continued prayers for 1) My twin sister’s corneal cysts to disappear completely; 2) For no reactions to her new chemo drugs; 3) For my twin sister’s COMPLETE healing and 100% effectiveness of the chemotherapy and hormone treatment so her cancer never ever comes back!! 4) Side effects to continue to be minimal / nonexistent!!, 5) For her joy and peace amid the crucible that is chemotherapy and cancer survivorship.
Even in the midst of trials, we are choosing to remember and celebrate that God is good all the time!
