My Breast Cancer Journey Part 30: My Twin Sister is Halfway Done with T-DM1 & October is Breast Cancer Awareness Month!

My Breast Cancer Journey Part 30: My Twin Sister is Halfway Done with T-DM1 & October is Breast Cancer Awareness Month!
Here she is, knocking out her 7th infusion of T-DM1 at Mayo Clinic in Rochester, Minnesota! She's halfway done with her post-operative chemotherapy regimen now!!

This blog post is the 30th 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 October 1st, which means it’s the first day of Breast Cancer Awareness Month!!! Here are a few highlights for us at this moment in time!!:

  1. Breast Cancer Awareness Month is happening!! Our Dad was recently invited to take part in a fundraising campaign called “Real Men Wear Pink,” backed by the American Cancer Society. You can donate to support cancer research, treatments, and support for cancer patients on his fundraising page at this link!!! His goal is to raise $2,500 for ACS during the month of October, and he has already raised over $700! My husband, Chris Steinke, is going to host some Facebook Live music events featuring breast cancer awareness throughout the month of October! The first one is at 6:30pm CST on Thursday, October 1st! Join us on his Facebook page!!
  2. My twin sister is halfway done with her post-operative chemotherapy regimen of T-DM1! Last October, we were just getting started with all of this breast cancer diagnosis and treatment stuff. It’s hard to believe all that can happen in a year’s time!
  3. My twin sister’s microcystic edema isn’t getting worse, but it isn’t getting better, either! Prayers are immensely appreciated for the cysts on her corneas–that are likely caused by her daily intake of Tamoxifen and exacerbated by eye dryness caused by her T-DM1 infusions–to heal sooner rather than later!!! They “ebb and flow” in severity after every one of her T-DM1 infusions, which occur every 3 weeks.
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Here we are at the front of the line for Slinky Dog in August 2019!

One year ago…

It’s been one year since my diagnosis with breast cancer at Mayo Clinic’s Breast Clinic in Rochester, Minnesota. It’s been a year since my twin sister’s diagnosis, too! Facebook keeps sending me “memories” from one year ago, which include posts about our journey as we got off to the races of breast cancer diagnosis and treatment together.

Our family has a running joke: In August 2019, we went to Walt Disney World. It was an amazing vacation, and one of the highlights was riding a roller coaster modeled after Slinky Dog from Toy Story (pictured above and below). The joke was that my mom hates roller coasters, but by some miracle, we got a pass to go to the front of the 90-minute line of hundreds of people and ride it all together as a family.

slinky-dog-group

Walt Disney World Hollywood Studios cast member Jeff and his wife gave us a pass to go to the front of the Slinky Dog roller coaster all together as a family!

My mom hates roller coasters, but she rode it anyway because she puts her family before herself in most things in life and she knew we all wanted to ride it together. When our lives went off the rails with our cancer diagnoses in fall 2019, our whole family affectionately blamed Slinky Dog. Maybe, just maybe!, if we’d never gotten on that roller coaster, our lives never would have gone off the rails!!

slinky-dog-selfie

Proof that my mom rode Slinky Dog at Disney World! Here is she is, right behind me, next to my dad!! LOL

Making jokes and memes like this and finding silver linings along the way has been crucial to our mental and emotional well being over the past year. We’ve come to learn firsthand that sometimes God allows cancer diagnoses or other huge challenges into our lives as invitations to trust Him more (Book of Job, anyone?!).

God definitely has our attention!, and it’s our hope that our journey can be an encouragement to others–to persevere in the midst of seemingly insurmountable challenges and trials. And–dare we say!–to even find a bit of joy, peace, and fun along the way. 🙂

As one of my good friends reminded me recently: “God is closer than the air we breathe.” Also: God is Lord over the mountains AND the valleys (1 Kings 20:28 & “Graves into Gardens” by Elevation Worship).

gizmo-breast-cancer-blanket-aunt-jeanne

Our Aunt Jeanne made Gizmo the Boston Terrier a custom breast cancer awareness blankie which he loves!!! She is an AMAZING seamstress!!!

“Real Men Wear Pink!” and Breast Cancer Awareness Month!!

October is Breast Cancer Awareness Month, and our Dad was recently invited to take part in a fundraising campaign called “Real Men Wear Pink,” backed by the American Cancer Society. You can donate to support cancer research, treatments, and support for cancer patients on his fundraising page at this link!!! His goal is to raise $2,500 for ACS during the month of October, and he has already raised over $500!

To support my dad reaching his goal and to raise awareness for breast cancer in general, my husband, Chris Steinke, is going to host some Facebook Live music events talking about breast cancer throughout the month of October! The first one is at 6:30pm CST on Thursday, October 1st! Join us on his Facebook page!!

mayo-clinic-tdm1

Here is my twin sister with her husband in Rochester all ready for her 7th infusion of T-DM1!

My twin sister’s 7th infusion of T-DM1: She’s HALFWAY THERE!!!!!!!!

Okay, so now on to a few updates about my twin sister’s chemo regimen!: My twin sister knocked out her 7th infusion of T-DM1 last Friday at Mayo Clinic in Rochester, Minnesota, with no adverse reactions to the drugs!!!! This is a HUGE answer to prayer–this means she’s halfway done with her post-operative chemotherapy regimen and only has 7 more infusions to go until she’s ALL DONE with chemotherapy!!!!!!!!

We are so grateful she’s feeling as well as she is! She still has impaired vision from her microcystic edema, which is likely caused by her daily intake of Tamoxifen. But, she has had little to no nausea with her T-DM1 treatments, while before her surgery, during her six 6-hour infusions of TCHP, she had quite a bit of nausea. She has a bit of fatigue, which is to be expected, so she’s being kind to herself. She’s experiencing a bit of neuropathy in her left foot, but said that it’s actually getting better compared to how it felt during TCHP before surgery, which is a huge praise! Exercise helps with that, and she’s been walking/running on the treadmill and working out in their home gym regularly!!!

Also: Nutrition matters! Her blood levels have been awesome, which is largely due to her eating healthy. She and her husband are being intentional about eating lots of whole foods, meat high in iron, and fresh fruits and veggies, and it’s reflected in her blood levels!

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Here are the blood counts from my sister’s most recent infusion! Thanks to healthy eating and exercise, she’s keeping her numbers in the healthy range!

tdm7-eye-1

At the beginning of my sister’s eye exam, she was having trouble reading even the biggest letters on the screen, because her corneal cysts make her field of vision extremely blurry. Prayers appreciated for healing and deliverance from this nuisance are so appreciated!!

Microcystic edema update: Prayers please!!!

While we celebrate that my twin sister is halfway done with her post-operative chemotherapy regimen, we are sad that her corneal cysts aren’t gone yet and don’t seem to be getting better. While they aren’t getting better, they aren’t getting worse, either, which is a praise!

I drove her to a follow-up appointment with her eye doctor in the city this morning to check up on things, and I listened as she explained to the eye doctor and technician what exactly has been going on.

It turns out that my sister’s eyesight has gotten worse since her most recent T-DM1 infusion last Friday, which is a pattern that’s been happening the past several weeks. In August, she started experiencing blurred vision–she couldn’t read street signs. She found out this blurred vision was due to cysts on her corneas, which her eye doctors think are caused by her daily intake of Tamoxifen.

Then, over the past several weeks, for a few days following each of her infusions of T-DM1, her eyesight gets more blurry than it was before the infusion; and about a week after each infusion, it gets back to baseline. It ebbs and flows, she said–her eyesight gets worse for a few days after every infusion then usually gets a bit better about a week after each infusion.

But her eyesight is never good–everything is blurry, even with her glasses on, and she can’t wear contacts at all right now.

She explained to her doctor that she has a slight sensitivity to light, too, but that it’s not terrible.

During her eye exam, she had a lot of difficulty reading the letters on the screen. At first she couldn’t read any of them, not even the big ones. I could tell she was getting frustrated (she is a Maximizer and Enneagram 8 after all!), but then the technician put down a slide with little holes in it and my sister started being able to read more of the letters!

tdm7-eye-pinholes

Here is my twin sister after the technician put the pinhole lens down that shoots light straight to the retina, past the cornea, which improved my sister’s vision immensely!

“What exactly are those??” my sister asked.

“Yeah! They helped a ton! Can we get those in sunglasses form??” I said.

“They’re pinholes that direct light back to the retina and simulates squinting which means when you use that as an assist mechanism that the problem can be corrected!” the technician said.

Reading letters was a bit challenging and I could tell my sister was getting frustrated. So I started calling out percentages of completion.

“100%!” I said when the pinhole lens came down. My sister and the technician laughed.

As the letters got smaller, her perception got worse.

“60%!” I exclaimed at one point.

Then we moved on to the peripheral vision exam, with the technician pointing her fingers up in the air. This was no problem for my sister, praise the Lord!

tdm7-eye-3

She had no problem with her peripheral vision test which is awesome!

Here are the main questions we had going into the eye doctor appointment along with the answers from her doctor:

1) Are these cysts connected to TDM1 and / or Tamoxifen and if so is there any way to tell which one?

“You have an increase in PEK’s and crystalline deposits,” the eye doctor said. “The PEK’s are different than the crystalline deposits, so I think that’s what it is. Chemotherapy exacerbates eye dryness, so that’s probably what’s happening. It looks like you have a flare in dryness from your recent chemo infusion, but what’s happening here is not inflammatory. Instead, it’s a byproduct of Tamoxifen that causes the deposits.”

2) Will these cysts continue to get worse as the infusions and Tamoxifen continue? If so, is there any treatment for these cysts?

“Chemo likely induces some dry eye which decreases tear production, so it may be useful to bump up your use of artificial tears right after infusions, especially going into winter and especially with mask wearing, because masks tend to fog up your oculars. When you breathe into a mask it’s kind of like a fan,” the eye doctor said. “Use artificial tears, single-use preservative free ones!–as frequently as every half hour after your infusions. If you use preservative free, single-use, individual tear drops up to every half hour after your infusions, it should help.”

3) Is this reversible / will it go away?

“Is it getting worse?” my sister asked. “Last time you said a half moon of cysts had cleared up on the right side, and it’s not changing. Is that still true?”

“It’s not getting worse, and I wouldn’t expect it to change at this point, as long as you’re on chemotherapy and Tamoxifen until they take you off of it,” the eye doctor said. “We just have to watch it. It may not end up being anything visually significant. It clears up for most women who come off of Tamoxifen, but for some it doesn’t change. We will just have to see. It all depends on the density of the deposits, which are staying the same right now. Maybe everything will be pretty good after you complete your IV chemo, but maybe there won’t be any change when you’re done with T-DM1. We will keep checking you to make sure.”

4) If she stops T-DM1 and/or Tamoxifen, what could she do instead?

“I’d be interested in hearing about what your oncology team might suggest, but I would go with the opinion to stay on whatever is systemically most effective, because if you change course at this point, there’s no promise it will change what’s happening in your eyes,” the eye doctor said. “I’ll stay tuned and we’ll give you another check in two months to make sure things aren’t changing.”

aj-steph-gizmo

Here we are after my twin sister’s eye doctor update for her microcystic edema! I’m trying to show off Gizmo’s breast cancer awareness blanket but he’s thrashing around and getting in the way and being the cute little monster that he is sometimes!!

Gizmo the Boston Terrier

As promised, this post includes some more adorable photos of Gizmo the Boston Terrier! My twin sister and her husband got a puppy last month and he is bringing them lots and lots of joy on this journey. 🙂 Especially in the midst of my twin sister’s husband starting overnight shifts at work for the next few months, he is a ray of sunshine in their lives for sure!!!

He is pictured above with my twin sister, and earlier with a custom breast cancer awareness blanket our Aunt Jeanne made for him!!! Aunt Jeanne also made us quilts for our breast cancer journey which are featured in this blog post from December 2019!!!

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Here is another photo of my twin sister with her new puppy Gizmo for good measure!

Next steps

My twin sister’s next chemotherapy infusion is scheduled for Thursday, October 15th, and she has a follow-up appointment with her eye doctor on Monday, November 30th. Until then, we are continuing to pray for 1) My twin sister’s corneal cysts to disappear completely, and for patience, joy, and peace in the healing process!; 2) For (continued!) 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) For her joy and peace amid the crucible that is chemotherapy and cancer survivorship. For me, I have my one-year follow-up appointments scheduled at Mayo Clinic with my plastic surgeon and Breast Clinic physician on Friday, December 18th–seven days before Christmas Day! Merry Christmas to me!! 🙂

My devotions recently keep coming back to the Book of Hebrews–specifically, the reminders to come boldly to the throne of God with our requests, trusting He is faithful to hear us. In a devotional I was listening to on YouVersion recently, they said how expectations have a way of becoming reality. So we persevere in running the race set before us, keeping our eyes and hearts fixed on Jesus, the author and perfecter of our faith! He has perfect plans and we trust Him.

Thank you for reading all the way to the end of this post and for joining us in prayer! God is good!!

hebrews

This blog post is the 30th 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.

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