Tatijane first knew something was wrong when she started having pain near her ribs. Her pain became so severe she was rushed to the ER and was then diagnosed with acute lymphoblastic leukemia, both B and T cells, with mutations. At 24, she was then given 6 to 8 weeks to live.

She shares how she processed her shocking diagnosis, the different treatments she’s undergone including a double CAR T-cell therapy clinical trial, and how she’s giving back to the cancer community.

She voices how she coped with three cancer recurrences, the emotional toll her diagnosis has taken on her, and how she found support.

Pre-diagnosis

Initial symptoms

The January before I was diagnosed, I was starting to have bone pain in my ribs. I developed this mass in between my breasts. I started to get what I thought were tight muscles or little knots in my back. It was very painful, but I just kept getting massages from my family to try and get that.

I stopped eating so much because it was hard to eat. I was having issues breathing, but I was also overweight. I was 306 pounds so I thought maybe all of this had to do with being overweight. When I went to the doctors for all these issues, they said, “Lose weight and it will help.”

Then it was, “You have PCOS (polycystic ovary syndrome) so maybe that has something to do with it,” or “You have insulin resistance; that could have something to do with it,” or I also had other hormone imbalances, maybe that has something to do with it. It always came back to lose weight and it’ll go away.

On February 17th, my best friend stayed the night at my house. Then [on] the 18th, I went into the ER because I was in so much pain [that] I couldn’t handle it. I was diagnosed [on] the 19th. It all happened very fast.

Getting the official diagnosis

My mom was sitting in the parking lot. Then maybe 10 minutes before they came in to tell me my diagnosis, I said, “Just go home,” ’cause it was already one in the morning. “I’ll call you when it’s time for me to come home.”

By the time she got home, I was calling the house phone. The doctor had to come in and said, “I’m really sorry to tell you this, but you have cancer and it’s throughout your whole body. You would have 6 to 8 weeks to live.”

Originally, they said it was non-Hodgkin’s lymphoma. It was very sad and very scary to hear. I remember trying to keep my composure. I was like, “Okay. How do we resolve this? How did this happen?” He was telling me it could be environmental, it could be genetic, all this stuff.

I remember just crying and going, “Did I do something wrong? Did I cause this on myself?” It was the weirdest. Went from mature, “Okay, how can we do this?” to then just crying.

There was no history of cancer in my family and there still isn’t [on] either side. It had to have been environmental. My family and I think we know what caused my cancer.

Official diagnosis

They were thinking it was non-Hodgkin’s. But after doing more tests, they realized that it was acute lymphoblastic leukemia, both B- and T-cell with other mutations.

I understand that my cancer is one that you either have one or the other, not both. It’s not typically found in adults and it usually doesn’t grow as fast as mine does.

Treatment

They [said], “We have to get you an oncologist and we have to keep you here until we could do the next steps.”

I spent the night in the ER. The next morning, they admitted me into the hospital for about two weeks.

I couldn’t see my family and friends in person except out the window of the room that I was sharing with someone. I was on the third floor so I would look down and they looked like little ants.

Double CAR T-cell therapy clinical trial

We went to Stanford [and] did a double CAR T-cell therapy. I did it in June and it was fantastic.

Dr. Muffly at Stanford, who was doing the trial, [was] the one that talked to me and became my primary over there.

I did actually have neurological problems through it. There were side effects, but in general, the process is very easy and it was very interesting to learn. That put me in remission for a little while.

Two weeks before I went into the hospital for the double CAR T-cell therapy, I went in as an outpatient and they took the T cells out. It was a very easy process. It was just like giving blood if you’ve ever done that. They just take the [T cells] out and put the remaining blood back into your body.

What they did with the T cells was make them like little ninjas. You get put inpatient and when they put the CAR T cells in my body, it was just like getting any other infusion. Then you just hang out and see what happens.

They watched you. They do neurological tests every day where they ask you questions. You have to write your name every day as well to see where you are [and] if you’re going to have a neurological issue. They watch for other side effects as well. But for the most part, it’s just easy.

Bone marrow transplant

We tried a bone marrow transplant. They knocked everything out of my body. At that point, I was [at] Stanford for about four or five months already for the double CAR T and then another five to six months for the bone marrow transplant.

Honestly, the bone marrow transplant was the hardest treatment I have been through. 

They already knew that I needed a bone marrow transplant prior to the double CAR T. They just thought that they would get a little bit longer before they can give it to me, but it really wasn’t that long.

They [paired] with Be The Match to find a match for me and I ended up getting the perfect match. They were a year younger than me, but that was all I knew.

I did four days of radiation, twice a day. It was [the] full body but also localized to the lung area and sternum area. I also did heavy-duty chemo for about four days to maybe even five days. Then they gave me the bone marrow, which was the big bag.

My donor went above and beyond to be able to be my donor. They got a tattoo a few months prior to being asked to be my donor because they had no idea. They told me, “They can’t be your donor now unless you say that it’s okay.”

I think that one was maybe two months. I got to go home a week before Christmas after my bone marrow transplant. I was not in remission at that point, but it was low enough that they could deal with it.

Then after that, I was put on experimental chemo, called navitoclax, paired with venetoclax, which is a normal chemo. I was on that for seven months. I did really [well] and then my body figured it out.

Now I’m on Blincyto. I’m on my two-week break. After two weeks, I get put into the hospital for two days and start round two on the day that I get admitted.

I’m watched for two weeks, get sent home for the remaining four weeks of treatment, and then go to the infusion center every week to get my bags changed. Then two-week break and then back in the hospital for round three. They want to do this for as long as my body will allow it, basically.

I was trying very hard to be positive, but it was difficult during that time.

I got to the point where I couldn’t talk because I was in so much pain. My lips were so swollen and they were bleeding. I ended up getting on pain meds, which were very helpful.

I decided that I’m not going to fight doctors on it anymore, which is funny because I just fought my doctors on pain meds for my nerve pain, but then I gave in at some point.

I also got C. diff at the same time plus side effects from the radiation and chemo, including nausea, vomiting, [and] diarrhea. Smells change. Smells can trigger nausea and sickness. A lot going on. I did not feel good.

I was trying very hard to be positive, but it was difficult during that time.

I’m also very happy it happened the way it did because that was the hardest treatment. I was in so much pain. I probably lost the most weight during that treatment because I stopped eating completely.

They had to feed me through a tube in my PICC line, which is the hardest weight loss program ever. I ended up losing 100 and something pounds [from] being diagnosed to the end of my bone marrow transplant.

During my bone marrow transplant, my depression was really, really bad and that is when the Stanford psychiatry department came to talk to me. They ended up telling me that I actually had PTSD, anxiety, and depression, which made a lot of sense.

I was having really bad nightmares about me dying, which would wake me up and then I would be up for a long time. I couldn’t go back to sleep afterward and I was scared to sleep. Then during the day, I was just so unhappy.

I wasn’t eating because I also have body dysmorphia that I recently learned about, but apparently, I’ve had it my whole life. It was all just piling up.

Then the anxiety with scans and bone marrow biopsies that any time I hear bone marrow biopsy or spinal tap chemo, I instantly get really bad anxiety. I have panic attacks constantly. This is something I deal with now.

I will be fine throughout the day. I’ll be happy. Then, for example, I will have to go to the grocery store to go get something and I will have a panic attack because of germs. I wear a big pink HEPA mask and I would sanitize my hands, but I’m so scared of getting sick and doing something to mess up whatever treatment I’m on that I react to it.

During the bone marrow transplant, my depression hit me so hard that when I was in the apartment [after] I was released [from] the hospital, all I did was sleep. I was awake for maybe 30 minutes a day. That’s how it was for a couple of months. It was really bad.

It hit me so hard. I didn’t get on medication or anything to help any of it until recently, but it was also because I wanted my body to feel. I wanted to figure out a way to get out of it myself. I don’t know why.

I also did get put on medication for anxiety and depression.

With my therapist, we worked on the things that were causing nightmares. Death and the 6 to 8 weeks to live [were] causing a lot of anxiety. Yes, I outlived that, but when is it my time?

Even now, I still feel like death is just sitting there in the corner, waiting and watching me. I’m not a curable patient and, at some point, they say that this cancer is going to take me. But I also am pretty tough and I’m a fighter so we’ll see what happens. We’ll see who’s right.

Having to work through accepting death as a potential because with life is death so just accepting it helped the nightmares go away. Doing work like that I think helped a lot.

To be in these support groups and also talk with people that know what you’re going through and understand was super helpful and beneficial for me.

I wish I knew them [earlier]. In that first year when I was going through all these treatments and going in and out of remissions, I would have loved to be in these support groups and this excess support besides my family and friends.

Advocating for yourself

Knowing that your life is your life. No one can do it better than you. It’s okay. You’re not annoying the doctor if you are pushing them and saying, “No, no, no, there is something wrong. Please test for this.” Even if you don’t know what to test for, push for it because it’s your health in the end and your life and that’s the most important thing.

When I first got diagnosed, I was so worried about annoying the doctors that I didn’t want to tell them if I had a side effect. I was like, “Oh, I’m okay, I’m fine,” and put a smile on my face, and that wasn’t the case.

I realized that was hurting [me] more than anything. I was so uncomfortable that it was unnecessary. Just being able to advocate for myself and be like, “Okay, here’s how I’m actually feeling. What are your plans? What are your ideas on this?”

You are a team with your doctors. They are not working for you, you are not working for them. You’re a team and that’s just how it is. How is your team going to run well, if you’re not honest with each other?

You have to lose that filter. You’re going to have to tell them everything. You’re going to show them your whole body and that’s okay. Again, it is your life so [advocating] for yourself is the most important thing that you could do.