“You have to be your own advocate because nobody else is going to be a voice for you. If you have a concern, or want a second opinion, voice it, get that second opinion. There is nothing that says you can’t. It’s your right as a patient to have second opinions. Have a third opinion or a fourth opinion if you need it. Fire your oncologist. Fire your nurse. You can do that if you don’t like them or aren’t comfortable. You have every right. Definitely be an advocate for yourself because nobody else is going to.”

Kial’s story begins with a full physical in December of 2018 when she was told everything was good and she got the green light to continue working on the family she and her husband dreamed of. Because of some difficulties becoming pregnant, she was prescribed Clomid, a medication which increases hormones to stimulate ovulation. A month later, in January, Kial’s husband found a lump in her left breast. “I always joke, let your husband, or partners, feel you up because it’s important. He found it. I did not. My husband saved my life.”

They initially thought the lump was a result of the Clomid and kept an eye on it, but by March it was the size of an almond. “It was so painful I could hardly wear my bra.” She went to her PCP who thought it might be a cyst or possibly related to the Clomid. Her PCP ordered a mammogram just to be sure.

Trying to get a mammogram at 30 was the first challenge. To begin with, it wasn’t scheduled until July and insurance wasn’t going to pay for it due to her age. This sent Kial into fight mode. She called every day and was finally able to get one scheduled for April 1st. By this time, she didn’t care if insurance was going to pay for it, “it just needed to happen.” She got her mammogram before she knew if insurance was on board with it, but they did finally come around. Thankfully Kial not only had her own insurance, but she was on her husband’s policy as well, providing her with secondary insurance. This will come in handy for both her cancer and upcoming pregnancies.

She had her mammogram midday on the 1st and that night, when they should have been closed, she received a call telling her to come in for a biopsy in the morning. “I’m like, okay, that’s not good.” Now, Kial is a nurse, so she asked if she could see the mammogram results and then as they were doing the biopsy, she watched the screen and saw the lump was black. “In my head I thought, that shouldn’t be black, that’s a problem.”

Four days later on Friday, Kial received a call from her nurse navigator telling her she had cancer, no specifics, just, “You have cancer.” She then asked her who she wanted as her oncologist and breast surgeon. “I’m like, I can’t even process I have cancer, let alone I have no idea who these specialists are. I have no clue.” The navigator’s next comment was not to be surprised if she doesn’t see anybody for a month or two. “I’m like, hmm, no, that doesn’t fly with me. Absolutely not.” She told the nurse, “Here’s the deal. I’m concerned. I’m 30 and we’re trying to have a baby. We have been trying to get pregnant and haven’t been able to. This is what’s going on, we need to move sooner than weeks or months. I am not okay with waiting, that is not happening.”

Not knowing where to start, Kial called a friend she went to college with, who was diagnosed at 19 with breast cancer, to ask for some doctors’ names. She passed the names along to the navigator. One was no longer practicing, but they settled on doctors from the same practice. Kial asked that the doctors be made aware of her circumstances, so the nurse sent emails to the doctors and the following Monday Kial was in the breast surgeon’s office. It was at this meeting where she found out she had Stage 2, estrogen progesterone negative, HER2 positive, invasive ductal carcinoma.

Kial’s husband joined her at her appointment with the surgeon where they discussed what the plan was going to be moving forward. The doctor said, “The whole goal of all this is to make you parents at the end of the day.” Being a nurse, Kial expected she would need some imaging, and would most likely need to be NPO, for several hours prior to a scan. By thinking ahead and going without food and water since midnight the night before, she was able to get an MRI that day, instead of days later. The MRI showed that she had no lymph node involvement. There would still be a biopsy of the lymph nodes, but the surgeon felt confident the cancer was localized and most likely encapsulated.

Because the cancer was invasive it was likely the chemo she required could possibly make her sterile. Kial got on the phone to a local IVF provider to discuss harvesting her eggs, but they couldn’t get her in right away. She called a hospital in Portland, Oregon and explained the situation; she was scheduled Friday of that week for a consultation and to get the ball rolling. When she told her nurse navigator what was going on, she began making calls. Within a couple of days, Kial’s surgeon made a call to the local IVF provider, and she was in their office the following week.

Whew! What if Kial had waited until July for the initial mammogram? And, what if she had then waited another one or two months to see someone? What if Kial hadn’t pushed for an appointment with the local IVF provider?

“…definitely be an advocate for yourself because nobody else is going to.”

Harvesting those precious “squishies”

Insurance doesn’t cover IVF, even if you’re 30 years old and have cancer, and IVF providers want payment up front before starting the process. Because of her cancer predicament, Kial qualified for a reduced price on the IVF, and qualified for grant programs to cover the cost of medications. Even with the monetary help, IVF is still expensive. “How am I supposed to come up with, you know, $15,000 in two weeks?” They scrambled to come up with the money pulling it from multiple sources including savings and credit cards; her parents, retired teachers in the state of Oregon, reached into their own retirement to help.

After days of bloodwork, scans, and shots they harvested her eggs on April 29th. 13 eggs were harvested and then fertilized. Of those 13 eggs, 8 survived and were genetically tested. (The reason for testing is if something is wrong with them, the body is likely to spontaneously abort them.) Of those 8 eggs, 7 were viable and of those 7, they had 4 girls and 3 boys. The embryos were frozen. She kept an ultrasound of the embryos on her refrigerator and lovingly called them her “squishies.”

Now back to the serious business of cancer

Initially, Kial wanted a double mastectomy but after going through the IVF process and seeing the embryos, her future babies, her precious squishies, she wanted the chance to breastfeed, or at least pump her own milk for them. Kial was also dead set against radiation if she didn’t need it. As a young, now 31-year-old, she knew she had greater chances of getting a secondary cancer later in life if she had radiation, so she and her surgeon came up with a plan. If the lymph node biopsy was negative, she’d have a left-side total mastectomy with no radiation, but if it came back positive, they’d do a lumpectomy because she’d have to have radiation anyway.

Surgery was May 21st. The lymph node biopsy was first, and when it came back negative, they removed her left breast saving her breast skin and nipple. They also put her chemo port in and started her reconstruction surgery by inserting an expander. It was a 9–10-hour surgery. After the surgery she was given 6 weeks to recover and get some movement back in her arm before they started her chemotherapy.

Chemotherapy and Immunotherapy

Kial’s chemotherapy began June 24, 2019. Because she was HER2 positive she would need a year of immunotherapy (Herceptin) which would be every 3 weeks. And because she was estrogen progesterone negative, the plan was to do 12 rounds of Taxol, one a week for twelve weeks. She started the day with Herceptin, but she had an immediate anaphylactic reaction to Taxol when it was administered. “My husband explains that it [was] like hell boy coming out of the chair because he watched me turn beat red and all my muscles just cramped so tight… I stopped breathing. It was the scariest thing ever.”

The reaction meant she’d have to use Abraxane, the same base chemo drug as Taxol, but bound with a protein instead of a solvent for delivery, and she’d have to wait a week or so to begin it. Then there was the problem she had with Herceptin; it gave her headaches, migraine headaches. The hope was the headaches would end when the treatment ended, but that wouldn’t be the case. Kial now has chronic migraines. She began the Abraxane three weeks on with a week or two off, depending on what her blood counts were. “It was about getting through chemo, Mondays and Tuesdays, I was good. By Wednesday, I was exhausted. Wednesday and Thursday were my bad days. And I was always tired.” Kial knew that chemotherapy is neurotoxic, meaning it can disrupt the nervous system, potentially causing neuropathy. To avoid this possibility, she learned from studies that there have been positive results using cold therapy during the infusions. With nothing to lose, she tried it; she kept her toes and fingers on ice during all of her Abraxane infusions.

She finished her Abraxane infusions September 9, 2019, and continued her Herceptin infusions until June 15, 2020. During the pandemic, “[the] appointments were hard because I couldn’t have anybody with me. It was just me. It sucked. The other patients were going through the same thing, no family with them either, but we had each other. We kind of became family.” The Herceptin treatments were on Mondays, every three weeks and she often had to take Wednesday or Thursday off because of the migraines.

Kial returned to work September 12th after 117 days off and on day 126 she wore her wedding ring for the first time since starting chemo because of the inflammation she had had. Bald and wearing a soft skull cap, she returned to work at the Oregon Department of Corrections where she is a nurse and where she received a welcome response from her patients and co-workers. “As a provider you never really know if you have an impact on your patients. A couple of them stopped me, and were like, ‘We just want you to know we’re so glad to see you back. And we hope you’re doing okay.” Even co-workers she wasn’t exceptionally close to welcomed her back as if she was family.

Reconstruction, The best laid plans

When Kial had her initial surgery, they had a plan for both her left and right breasts so they would look alike. They were going to use the gummy bear teardrop-shaped implants with a larger one implanted on her left side and a smaller one on the right so they would match. They had inserted the expander made for that particular implant on the left side during her first surgery, but before they could finish the reconstruction, the implants were recalled. They continued to use the expander and began injecting saline on June 13, 2019. “It was the weirdest feeling, and each fill hurt when it got tight.”

Note: It’s now June 2019, a full month before what would have been Kial’s initial mammogram in July. If she hadn’t gotten on the phone, if she hadn’t pushed for appointments, where would she be today? Remember Kial’s words,

“You have to be your own advocate because nobody else is going to be a voice for you.”

Sadly, they were unable to get the left side filled enough to match the right side because Kial’s skin was so thin; it just couldn’t stretch quite enough. Then because the teardrop-shaped implant was recalled they had to use a different one that wasn’t made for the expander. “Now I call it my stripper boob because it’s round, very round and rigid.” And, because the expander and implant weren’t compatible, she has some wrinkling and occasional pinching. “There is a little bit of [a] size difference, but I’m really the only one who knows, and my husband doesn’t care. He’s like, ‘I don’t care, doesn’t bother me. They’re just balls of fat anyway.’ It just is what it is.”

Bags for Boobs, friends and support

While Kial was going through her chemo treatment, her and her husband’s friends and co-workers, their second family, wanted to do something for the two of them so they threw a fundraiser, silent auction and a corn-hole tournament, called Bags for Boobs, on July 20, 2019. Along with the games there was someone shaving heads, and it was at this very time that Kial’s hair was falling out, and with it, she had pain. “It was very painful, like needles poking my scalp all over.” At the event many of the boys and men started shaving their heads in support of Kial. She had already cut her long hair short to help with the pain, but it was still a lot to bear. “The pain’s too much. We just gotta get rid of it, and we shaved my head too.” The money raised at the event went to their children’s fund.

She and her husband were never without support from their families, friends, neighbors, and coworkers. Rarely a day went by when someone didn’t drop food or a gift card by as Kial had made it clear that she not only wasn’t that hungry, but she wouldn’t be cooking. In fact, most food tasted off; her tastebuds were greatly affected by the chemo. Most sweet desserts had become over-the-top sweet, and she had to avoid them all together. The two foods that not only tasted decent but were her go-tos were mac-and-cheese, and peanut butter and jelly sandwiches.

Migraines associated with immunotherapy

“I lived with those [migraines] for 22 months and I couldn’t do it anymore. It was the, ‘I don’t want to live if I have to deal with this pain every day.’ My oncologists and all of them are like, it’s just a side effect. You just have to deal with it. I was living with a 7 or 8 out of 10 pain every single day. I was puking. I was exhausted. They hurt and nothing touched the pain.” Kial even went back to work with migraines, but she had to do something about them, so she put her self-advocacy hat back on.

“I was finally able to find a neurologist in Boise. She’s a nurse practitioner actually, and she’s amazing. She was the first person, after 22 months, that finally listened. And when you have a 31-year-old in your office bawling, saying it’s not worth living if I have to live with the pain anymore. She listened.” By this time, Kial had tried just about every migraine medication out there, except biologics, because she wanted to get pregnant.

The NP suggested an occipital nerve block but said Kial would have to try one more medication before insurance would cover it. So, she filled the prescription and moved on to the nerve block. It was administered by injecting an analgesic, in this case lidocaine and bupivacaine, into the nerves on both sides of Kial’s upper neck. “It was the most incredible feeling, I could hear it kind of popping and breaking everything up in the back, and then within 5 minutes the pain was gone. I was in tears because the pain was gone. It was unreal. It was amazing!”

The first injections lasted 3-4 months and the second one lasted a year. She was warned that when she got pregnant there was a likelihood the migraines would return because of raging pregnancy hormones, and they did. They did the injections again after her son was born and she hasn’t had one since. Her son is now 23 months old. She still has the occasional headache, but it’s not like the debilitating migraines they once were.

Keeping everyone informed

Kial and her husband have a lot of friends. They live in Fruitland and work in Ontario for the Oregon Department of Corrections. They found it difficult explaining what was going on to everyone, so Kial started a Facebook page called “Let’s Get It Off My Chest – Cancer Touched My Breast,” where she kept everyone informed. “We’re pretty much family out there. I mean, he’s an officer and I’m a nurse, everybody overlaps so it was [the] easiest way to be able to share with everybody. [I don’t] have to repeat myself a hundred times.” She also found posting her experiences cathartic and a good way for her to cope with what was going on.

Kial allowed me to read the posts and watch the videos on her Facebook page. It was beautiful and inspiring to see the interactions with all her friends. She did multiple live chats with countless people tuning in, from as far away as Japan, to get the latest news. The friendship and support were enormous.

Phenomenal women she met along the way

Kial’s physical therapist who specialized in breast cancer rehab had heard from numerous young survivors, including Kial, that they had no place to go for support because most women who attended the breast cancer support groups were older. “They’ve had their kids, they’re not 30 or 40. They have no idea how it’s affecting your sex life, or having children, as most have already gone through that stage of their life. I was a newlywed still in the honeymoon phase.” The physical therapist introduced Kial to another survivor at one of her appointments, they talked and cried, they had someone they could relate to. The two discussed what the valley needed, something that had been brewing in this survivor’s mind for a while, and she made it happen; Shades of Pink Breast Cancer Support Group for younger women was formed. Kial became one of the original members of this new group in Boise which now has about 150 members and strives to have an event each month.

And what happened to those frozen squishies?

Kial had to get an all clear from each of the doctors involved in her cancer treatment, including oncology, OB and maternal fetal medicine before she could consider getting pregnant. She started the process in August 2021, 14 months out from her last Herceptin infusion. They did not choose which embryo or sex would be used, instead they asked that it be random. “We felt it was about our only chance to have a surprise and go through the most normal process of having a baby. If we wanted to find out the gender, we could do a gender reveal, but in the end, we waited until I delivered.” The process wasn’t normal though as they had to go through hormone injections just as if she were being a surrogate for herself. “I didn’t count, but I would bet that there were probably close to 500 injections that I had to do.” Then they had to sync the transfer up as best they could with her own cycle so her “squishie” could have the “fluffiest” uterine lining to attach to.

It was September 29, 2021, when she had her first embryo transferred. “We were lucky that it took the first time, and I delivered a healthy baby boy May 2022, and I’m currently 29 weeks pregnant with our second. And it’s a little girl.” This time they did choose the sex and she is due July 13. What started as an attempt to start a family and get pregnant almost 5+ years ago, though thwarted for a number of years, has come full circle and they’re soon to be a happy family of four.