Steffen Family in Animal Kingdom - Breast Cancer Awareness
A few weeks ago I was tagged in a social media post requesting a photographer for a family visiting Walt Disney World in Orlando Florida. This person wanted so badly for this family to have photos documenting their time together — something I’m passionate about.
But this family was bound heart and soul to a wife and mother with Stage IV Metastatic Breast Cancer.
I didn’t hesitate in volunteering for the job, feeling grateful I would I have the opportunity to bless this family. But I had it all wrong: they blessed me. Upon first meeting, I fell instantly in love with them all : an adoring and hard-working husband and father, Jamie, a kind and generous teenage daughter, a soft-spoken and shy son, and their outgoing youngest daughter — but especially with Kelly, with her warm brown eyes and smile that could knock you to the ground. She’s a hugger too, which I’m not (usually), but her hugs are vital forces of nature with the feeling of Home. Kelly is the most ALIVE person I’ve ever met, buzzing with energy and love. She’s a remarkable human being, and one I instantly, and will forever, call “friend”.
Kelly is also very forthright, about her condition and about how it’s affecting her family. I asked her if she’d allow me to share her story with the world, and she whole-heartedly agreed, saying how very much she hoped her story might reach others and save them from costly mistakes.. So here’s Kelly’s story, in her own words, equal parts candor and humor — and I urge you to read them. Please be aware the mature content and graphic nature of her words.
Mid Sept 2013 I was in the shower when I felt a lump on my left breast. I didn't think much of it. Figured I had a clogged duct or something. Time went on and life got in the way. I would randomly check to see if it was still there. Come March 2014 it was still there so I forced Jamie to get a job that provided insurance. I went to the [doctor] at the end of March, and by that point I was having a weird issue with my tongue, and it was super sore to where I couldn't eat, so when I saw the dr that was my main concern.
I had made an appt with an OB to have the lump checked, but the soonest they could get me in [was] June. After we dealt with the tongue issue, she offered to do a pap [and] breast exam. She told me she wanted me to have a mammogram right away. I went home and called to schedule it, and apparently my doctor had already called and made them aware. They wanted to see me the next day.
The next day I went in with a friend of mine. They did a mammogram, and then told me that they wanted me to have an ultrasound [immediately]. So they moved my room and did the ultrasound. They worked with it for a very long time. When they were done they told me to get dressed and go to the waiting room because a nurse navigator wanted to see me. The whole time this is happening I was thinking what a total waste of time this all was. The nurse navigator came and pulled me into her office and told me that she wanted me to have a biopsy right away. She said their machine had just gone down for maintenance otherwise she would do it right then. She set me to come back in the next morning, which was a Friday. So off I went, still thinking no way is this cancer, that happens to other people, and that it was a waste of time.
They laid me up and I had the doctor and nurse helping her, I had to keep my hands above my head so there was a nurse holding my hands and another standing [beside] me. As they started working 2 of the nurses were talking to me to keep me occupied. All of a sudden I felt a large amount of pressure and the dr said, “oh shit”. Turns out that the tumor was so hard it broke the biopsy needle. So they had to get out the heavy duty needle and went back to work. When they were finished it was just me and one of the nurses who was holding gauze on me, and she kept telling me all about the treatment options for invasive ductal carcinoma. And I was thinking, lady, its nothing why are you telling me all this? So they told me that they should have results back by Tuesday. I remember being in the shower Tuesday morning thinking omg, what if I really do have cancer. But then within seconds I was telling myself that I was being over dramatic.
My immediate family and a few very close friends were the only ones who knew what was going on. My mom had called me that afternoon and told me to call her as soon as I knew anything. I told her that if it came back that I had cancer I was not going to tell her over the phone. About 2PM that afternoon my phone rang and it was the nurse navigator. She asked me if I was alone and I said, “no.” The kids had just gotten home when she called. So I walked to the backyard with my friend Lisa that was at the house waiting with me. The lady said she was sorry to tell me but the results came back like she thought and I had cancer. My legs gave out from under me and down I went.
She told me that I needed to decide where I wanted to do treatment and find myself a breast surgeon and an oncologist. We hung up and within seconds Jamie called (he was at the grocery store with [our son] Jake, the kids had no idea anything was going on). I answered the phone and Jamie [asked], “what do you want me to get for dinner?”
I responded, “I don't know, I have cancer.” (Not my finest moment lol).
He said, “we are on the way” and left his full cart sitting right where it was and left to come home.
In the meantime, my mom called to tell me she was going to the store. I told her “no, stay home.” Her only response was “no” in a voice I'd never heard.
Jamie got home and just stood and held me for a few minutes. Then I told him I had to go to my mom’s. He didn't want me to drive but the kids didn't know yet, so Lisa offered to follow me. I drove over there and my parents were standing in the doorway,, I opened it and they threw their arms around me and cried. My dad kept saying it should have been him. That was the single worst moment of my life.
So on April 1, 2014 (April Fools Day. Funny, huh), it goes with how we have handled the whole thing, so its very fitting. I googled and found a great breast oncologist at a cancer center affiliated with [a specialist center near] my house. I made an appt and he filled us in on all the details of my cancer. It was ER/PR + HER2-. So that means that my cancer is fueled by estrogen and progesterone. He said with my age (34 at the time) and the aggressiveness (I was 3 out of 3) he thought I should do a full double mastectomy.
So he set me up with a breast surgeon. She agreed with the oncologist that this was my best bet. So she then set me up with a plastic surgeon who I met with and really liked. So the 3 of them got together and set the date of my surgery which was early May. The night before, me and a ton of my friends came over and we had a bye bye boobies party. The next morning bright and early we headed to the hospital. I was in surgery for 7 hours but when they were done they said all went great. They took a preliminary look at 1 lymph node from each side to see if they [could find] any cancer and said they didn't see any. Then I was given 4 weeks to recover before I could start chemo.
In the meantime I was miserable. I had these big nasty drains that I had to empty hanging out of my chest and I was going to see my plastic surgeon to have fills done. When they take out the breast tissue, [they] put in expanders. Then those get filled in his office to help stretch the skin to fit the new implant. At one point during filling my skin started to split. That turned out to be an ordeal itself. He kept trying to suture it back together and had me on a million different antibiotics. Eventually it stayed closed and we were able to move on.
During this whole filling process I got a call from my doctor telling me that the preliminary on my lymph nodes was wrong and they did find cancer which meant I was stage 2b. They also told me that the surgeon didn't get clear margins so there was cancer still left in the skin. We had the option of going back in for surgery to remove all the lymph nodes on the left side or to do chemo and radiation. He said that studies show they were equally successful and in his opinion we should just get moving on treatment. So that's what we did. Started with 6 rounds of chemo that I handled pretty well.
We had alot of fun at chemo. Different friends would go with me and I made a ton of friends (they were all about 80 lol). At my last chemo we had a chemo party where we brought fun little games and prizes. I wore a tiara my friend brought me. We brought homemade goodies for all my nurses and they secretly gave me gifts (that's a no no there). Then off to 33 rounds of radiation.
Radiation is everyday. So for 33 days straight I went in, stripped down and laid up in the machine. It was always me and 3 other ladies between their 60s and 80s and they called us the bosom buddies. We actually still keep in touch and meet for lunch occasionally. Anyway by the end of radiation I was burnt to a crisp. They radiated my left breast, my whole neck and down into my chest. So on top of being burnt by the time it ended it took me about 3 weeks to be able to eat again because it burnt my esophagus.
At this point my oncologist told me that I had to take this little pill called tamoxifen for the next 10 years. I had to see the doctor every 3 months to have bloodwork and a checkup. Then I got to set up my appt to have my expanders changed to implants. I wanted everything done by the end of the year so that I didnt have to hit my deductible again. So on 12/31/14 I had my surgery to get my implants.
Everything was great until late Jan when my boob popped open again. This time when it popped open it oozed nastiness. I went and saw the doctor who had me admitted to the hospital. They were giving me heavy duty antibiotics IV and had an infectious disease specialist come see me. After discussing the options they decided the implant had to come out. They took it out and cleaned the area really well and then I had to keep it out for 5 weeks. So for 5 weeks I was the one boobed woman. Hehe. We had fun with that one. Someone gave me a prosthetic but I used to rip it out of my bra and pop the kids and Jamie in the head with it. Or we would be at a restaurant and I would say I was hot and just rip it out and set it on the table. It was fun. Lol.
Once the 5 weeks was up and they put [my breast] back in, life went back to normal for almost a year. Then late 2015 I started having very heavy bleeding. Like I would have a super tampon plus an overnight pad on and when I would stand up blood would run down my legs. I went to the OB who said it was called flooding. She did an ultrasound and found masses on both of my ovaries. So she said I needed a full hysterectomy. So I did that. Turns out the tumors on my ovaries were precancerous. So back to normal life again. I had a few med changes in that time but other than that life was great. I was back to normal me.
Fast forward to Jan 15th 2019. For a few days I had been having pain in my right side. I thought it came out of nowhere. One evening I was sitting in the living room watching a movie with the kids and Jamie and I got a wild hair to have a glass of wine. I couldn't even finish it before the pain started. I gave it a few days but it was making me not be able to sleep at all and was just getting worse.
So on the 15th after the kids went to school I told him I needed to go to the ER (very not me). When we got there I told them what was going on. I did bloodwork and they came in and told me my liver enzymes were very high and they wanted to do an ultrasound and CT. They did the ultrasound and then very quickly wheeled me back for the CT. When I got back there were 4 people in the room with Jamie: 2 nurses, the nurse practitioner ,and her "boss". They told me that my liver is completely consumed with tumors.
I said, “so its back?”
He said, “it looks like it.”
He had an oncologist looking it over, and they wanted to admit me so that they could quickly get the biopsy and any and all scans done. He said he would give us a few minutes [before] the oncologist [comes in]. I called my dad and broke the news and he started crying and said he was on his way.
The oncologist came in with a copy of the ultrasound and said breast cancer cells have a different make up than other cancers and that she could look at it and tell that it was breast cancer in my liver. I asked her how bad and she said, “bad.”
So they admitted me, and Jamie only left when he had to because of picking up kids and stuff. My dad never left my side. I was there just 1 night but they did the biopsy and a MRI of my head. They discharged me and sais all info was sent to my oncologist and told me to call them and make an appointment right away because there was no time to waste. My doctor’s office called me on the way home from the hospital and set up an appointment for that Tuesday (I think this was on a Friday), [and] that night the oncologist from the hospital called to tell me the biopsy was back. It was breast cancer.
My mom did not take this news well. And neither did the kids. The first time I told the kids that mommy has cancer and is going to make me really sick but it will make me better. They were good with that. This time they asked if I was going to die and I said “yes, but not today.” That was tough!
I went to the doctor Tuesday, and she hugged me and cried. Told me I was stage IV terminal. I asked how long, and she said {i had] 1 to 2 years. She said she wanted a full body scan and that we needed to schedule surgery to get my port put back in. The next day I had my scans. Thurs I had my port put in, and Friday I started chemo. She said that normal chemo pills like hormone pills wont work for me because I was already on them when it came back.
First chemo I went into respiratory distress and had to be rushed across to the ER. They observed me until I could go off the oxygen and sent me home. My doctor called the next day and said the scan showed cancer in the head and neck of my femur and in the hip. So while doing chemo I had to do radiation again. Then 1 time after chemo I started running a fever so they made me go to the ER. After doing testing they couldn't find the source of the fever but they did find a blood clot in my lungs. I was in the hospital for a week getting injections. And am now on blood thinners for it still. While there I fell off the toilet in the night so they made me do all kinds of scans to make sure I wasn't hurt. During that they found a spot on my brain and also tumors along my spine. So back to radiation I went.
When I was sent home they told me they wanted to keep a close eye on my brain. I had a scan right before we left for vacation and there are now numerous spots in my brain in all different areas. [The doctors] asked if I was willing to stay home [from our Disney vacation] to get started, and I said no, which they understood. So when I get home I have to have another brain scan, and we have to make a plan of action which is looking like full brain radiation which will suck, but I'll do whatever I have to to stay here with these little lovies as long as I can.
That was the 1st time I have ever sat down and wrote my whole story out. I gotta tell ya, it was pretty therapeutic. Thinking about that stuff that happened back in the beginning and remembering my feelings and emotions that I felt back then. I never in a million years thought that I would be here now. It's just crazy! And Lauren, you have already done so much for us. You have seriously changed our lives. To know that my kids will have these pictures to look at when I am gone gives me so much peace and comfort! And on top of it all, it brought you into our life! And that itself is such a huge huge blessing to us because you are one of the most incredible people I have ever met in my life!
Kelly is one of the most incredible people in the world. Her generosity and open heart are remarkable.
If you’d like to help Kelly’s family, with medical and living expenses, please do so via her GoFundMe Page by clicking HERE.
