My Breast Cancer Journey Part 28: My Twin Sister’s 5th Infusion of T-DM1 & Microcystic Edema Continued

My Breast Cancer Journey Part 28: My Twin Sister’s 5th Infusion of T-DM1 & Microcystic Edema Continued
Here is my twin sister sporting her new haircut with her husband on vacation at Madden's in Northern Minnesota before her 5th infusion!! She looks and feels great!!

This blog post is the 28th 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.

breast-cancer-tdm1-5

Here is my twin sister knocking out her fifth infusion of T-DM1 in Rochester at Mayo Clinic!

My twin sister has now completed 5 of her 14 T-DM1  infusions, so she’s 35.7% of the way done with her post-operative chemotherapy regimen! She did great at her infusion, and was SHOCKED: She felt GREAT the week after her infusion, with little to no side effects!!! Thank you SO much for your prayers! 🙂

Thanks to to some healthy eating–she and her husband have been intentional about eating lots of leafy greens and high-protein foods every week–and exercising (walking outside and on a treadmill and lifting weights in their basement, and playing lots of golf and pickleball, which she’s been loving lately!), she got her numbers up to where they need to be and kept them there so she could go ahead with her 5th infusion on time!

We’ve also had our Bible study and family and friends praying for her health and her levels and so, thanks to healthy foods, prayer, and Jesus, she was green-lit for her treatment for her 5th infusion AND didn’t have hardly any side effects the week after her 5th infusion / treatment!

My twin sister said one of her anthems heading into each of her chemotherapy infusions is the song “Champion” by Fall Out Boy! It’s a rockin’ jam and pumps her up to get through chemo and come out the other side stronger than she was before–like Philippians 4:13 says, “I can do all things through Christ who strengthens me!” 🙂

Every day is a gift. We are all living on borrowed time. Especially us now it seems since our cancer diagnoses. 😉 God is good!!

Golf, pickleball, and the cutest haircut EVER!!!

My twin sister got her haircut for the first time since starting chemo last year and it looks AMAZING!!!!! She said she wanted to look like Halle Berry and her hairstylist did an INCREDIBLE job!! She looks and feels great!! Nobody can believe how much hair she has mere months after completing TCHP!!! Thank you, Paxman Cold Cap! 🙂

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Here is my sister with her hairstylist after her “Halle Berry cut!” Isn’t she cute!!

My twin sister has also been able to stay super active–she ran a mile on the treadmill a day after her 5th infusion of T-DM1, and has run/walked on the treadmill most days since then. That’s all in addition to playing lots of golf and pickleball at Madden’s on Gull Lake, a family vacation we got to enjoy even in the midst of COVID19 this month (as you can see in the video above, she says that could be the best drive she’s had on Hole #9 of Pine Beach East ever :)).

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We played lots of pickleball at Madden’s at our family vacation thanks to an amazing lesson with our nutritionist and her husband who happened to be there the same weekend!

Microcystic edema update: It’s (kind of) getting better!!!

While we rejoice that my twin sister is feeling great after her fifth infusion of T-DM1, her eyesight still isn’t great. She has to wear glasses all the time and will likely need to until her chemo is over in 2021, and her eyes are pretty sensitive to light. She’s been seeing a specialist in the city to treat her corneal cysts, and her doctor thinks she found a connection between Tamoxifen and corneal cysts last week, written up in two academic articles they talked through at her appointment.

While this is disappointing–ideally, my sister wouldn’t have to deal with side effects from T-DM1 or Tamoxifen at all–it’s better than some other side effects she could be dealing with like blood clots. And we are praising the Lord for His faithfulness and protection in that! Not to mention, even though her eyesight isn’t great, she can still beat us at pickleball. Seriously.

The short story is that the top layers of both of my twin sister’s corneas have swelling and microcysts all around the perimeter of them. These cysts are likely caused by a combo of wearing contact lenses and Tamoxifen. For example: Anyone who wears contact lenses gets microabrasions every time they put on or take out contacts. You can’t feel them or see them, but microabrasions happen in everyone who wears contacts. However, microabrasions in the eyes of people who are not immunosuppressed heal quickly, while immunosuppressed peoples’ microabrasions can let bacteria in, or, in my sister’s case, let Tamoxifen in, which likely is affecting her corneas from her tear ducts.
Nothing is 100% for certain, but it sure looks like there’s a connection between my twin sister’s Tamoxifen regimen and these corneal cysts–and potentially a connection to T-DM1 too given the timing of everything. She has an appointment with a specialist at Mayo Clinic in Rochester this Thursday, September 3rd, to investigate further and we are praying for miraculous healing for her in the meantime! Speaking of the meantime, my twin sister was on steroid eyedrops for a while three times per day, along with nonpreservative eyedrops. She stopped the steroid eye drops last week and she will go back for another check in a month! For now she’s on Xiidra and nonpreservative eye drops. They are keeping an eye on her eye pressure, as well.
Also: At her most recent appointment with her specialist in the city, we found out that the cysts in my sister’s right cornea are clearing up a bit–so much so that the cysts toward the outside of her face on the right side are totally clear! The cysts toward her nose on the right side are lagging a bit, and so is her left cornea, but the eyedrops she’s on should be “wiping out” the Tamoxifen from impacting her compromised corneas and the bottom line is: My twin sister’s corneal specialist she’s been seeing is optimistic this is all going to clear up!
“I just want to make sure not connected to cancer or anything,” my twin sister said.
We agree and know she’s in good hands!!!
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Here is my twin sister at one of her eye doctor corneal specialist updates! Praise report: The cysts on her right side are clearing up and her specialist is optimistic they’ll clear up completely in time!!

Hitting the wall

Beating breast cancer is a marathon, not a sprint. But, like every dedicated marathon runner knows, there’s this thing called “hitting the wall.” It’s a point where you don’t know if you can go on anymore and your body basically shuts down on you. I think it’s around mile 17. I’ve never been a marathon runner, so I don’t know this from personal experience–rather, it’s from stories from friends who run marathons. They are all inspirations to me, because there’s something about persevering even through immense amounts of pain that I can appreciate but have never been interested in putting myself through. It’s because I hate pain. Anyone who knows me will tell you that I can’t stand being in pain. Except for when I got diagnosed with cancer. I didn’t mind the pain that came with the biopsies, the sentinel node injections, and, ultimately, the double mastectomy with reconstruction. I didn’t mind so much the pain during recovery, either, or the recurring numbness, dull aches, and occasional shooting pains across my chest that I get to live with on a daily basis for the rest of my life.

It’s because, through my breast cancer journey, I’ve come to know the hope that comes with “abiding” in Jesus firsthand: That it’s possible to have joy in the midst of suffering, because Jesus had joy set before Him even though He had to endure the cross (Hebrews 12:2). I learned to trust that Jesus had gone before me (and my twin sister) into everything before us–every doctor’s appointment, scan, treatment, biopsy, and surgery–and that everything was going to be okay, no matter what happened. 🙂

Having breast cancer taught me more than anything else in my life about persevering and enduring in the midst of trials. And I didn’t even have to go through chemotherapy like my twin sister did (and still is). The words she exclaimed after she got the news she had to go through chemotherapy still ring in my ears every once in a while: “This was supposed to be you!”

What she meant by that is that I’m typically the older, bigger, stronger :), faster (most of the time) twin–and that she was sure I’d be able to handle it. For whatever reason, God didn’t have chemo in the cards for me right now. But he chose to save my sister through it!  And, as I’ve mentioned before, watching her go through it may be harder than me having to go through it myself (“survivor guilt” is real).

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Even in the midst of physical trials and pain, my twin sister and husband have been finding silver linings like renting and driving scooters around Rochester before her fifth infusion of TDM1! Here they are exploring the “Founders Mansion” 🙂

Enduring through pain

Faith is about endurance. So I guess I shouldn’t be surprised that God has been sending me lots and lots of messages about the importance of endurance in the Christian walk recently. First, it was a sermon at my church by Pastor Dominic Broda about the Parable of the Sower (Luke 8:11-15): “…the seed in the good ground—these are the ones who, having heard the word with an honest and good heart, hold on to it and by enduring, bear fruit.”

Second, I listened in on a message by Anne Graham Lotz as part of a Christian Fellowship Community breakfast on Monday, August 10th. She shared that she lost her husband 4 years ago after 49 years of marriage; she lost her dad, the evangelist Billy Graham, 3 years ago; and she was diagnosed with cancer last year and had to go through surgery, chemo, and radiation. She said it’s all been “horrific”–but she knows there is no more suffering in heaven and that death is nothing to be afraid of because we receive salvation and eternal life from Jesus, who will greet us to bring us to the other side. Her hope was contagious.

Third, there was a sermon I listened to on the radio by Pastor Colin Smith, who spoke a sermon on his “Unlocking the Bible” program on Faith Radio. His sermon was about how to encourage friends who feel like God is far from them, or is ignoring their prayers. We have all felt like this at one time or another, he said: “Is God really listening?” “Does God even care?” I immediately thought of one of the most painful moments of our breast cancer journey so far: The morning my twin sister was diagnosed with invasive stage 2A breast cancer. We’d just found out she needed surgery and chemotherapy, and when we got home from that appointment, my mom broke down and started crying.

“God isn’t answering any of my prayers!!!” she said as she sobbed.

As soon as the sentence came out of her mouth, my phone rang.

It turns out that Mayo Clinic had just accepted my twin sister as a breast cancer patient, which was one of my mom’s prayers! That was just one example of God’s faithfulness to us on this journey. While it’s not usually fun to wait and trust–in that specific case, in a matter of hours, God delivered us into the hands of amazing doctors and surgeons at Mayo Clinic–but other times, it’s months and years of waiting, trusting, hoping, and persevering. It’s been encouraging to see the Lord provide us with promises of His faithfulness in His perfect timing.

“Why” vs. “How long”

Pastor Colin pointed toward the Psalms in his sermon, and noted that there is a difference between asking God “Why?” vs. “How long?” He noted there are Psalms that address both of those questions–both “Why?” and “How long?”–and that both are very different questions. He said that the Psalms and prayers of believers that ask God “How long must I suffer?” deal with endurance. The “How long?” question takes as a starting point that God is good and loves us, but recognizes we need His strength to endure and persevere through life’s trials and suffering. That’s where my twin sister is at. At a small group gathering last week, she told us:
“It’s not fun to be a cancer patient. It’s not fun to know it will take me a week to get ‘back to normal’ after every one of my infusions. It’s not fun to know I’ going into my fifth infusion of 14. It would be much easier if it were 5 of 6. But it’s 5 of 14. I know…that God is teaching me perseverance through this.”
This is a real-life, real-world, real-time example of what cultivating patience and endurance looks like. For my twin sister, it’s literally enduring the fiery furnace of chemotherapy, which she’s said before that she wouldn’t wish on anyone. For me, it’s surrendering control of the situation to the Lord, along with my anxiety about the future. God is good and He loves us. And we can trust Him with all of our fears!
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Here is my sister and her husband with their new Boston Terrier puppy Gizmo!!

A NEW PUPPY!!!

My twin sister and her husband picked up a new Boston Terrier puppy last week and named him “Gizmo!” Gizmo is bringing them lots and lots of joy and happiness, with lots of kisses and playfulness to boot. He’s the cutest thing ever and a huge blessing for them. Given they can’t try to start a family until T-DM1 is complete and they hit the three-year mark of Tamoxifen, little Gizmo is filling their home with lots of love as their new, adorable fur baby!!!

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Here are two of our good friends in their “Team Mayo” breast cancer tshirts!!!

Next steps

My twin sister has a second opinion eye doctor appointment with a corneal specialist at Mayo Clinic this Thursday, September 3rd; her sixth infusion of T-DM1 along with an echocardiogram to check on the health of her heart this Friday, September 4th; and her seventh infusion of T-DM1 (HALFWAY THERE!!!) on Friday, September 25th.

We got a shipment of the new “Team Mayo” breast cancer tshirts last week and mailed them out to everyone who purchased one (THANK YOU!!!) Here is a photo of a couple–Sally and Yair–who have been prayer warriors for us and love their shirts! Yay!!

Thank you all for your continued prayers for 1) Her corneal cysts to disappear completely; 2) For no reactions to her new chemo drugs; 3) For her 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!! As my sister said: The corneal cysts are annoying, but they are something she can deal with–especially as opposed to cancer (especially in her cute new Warby Parker glasses :))!

steph-haircut-breast-cancer

God is good!! #beatingcancertogether #toffsbeatcancer

This blog post is the 28th 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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