Sasha’s Acute Myeloid Leukemia Story
Sasha also highlights how she handled losing hair from chemotherapy, paying for cancer treatment (financial toxicity), and survivorship. Thank you for sharing your story, Sasha!
- Name: Sasha T.
- Acute myeloid leukemia (AML)
- Age at Diagnosis: 24
- 1st Symptoms:
- Easily bruised
- Extreme pain in right, swollen hip
- Chemotherapy #1: cytarabine & daunorubicin
- Chemotherapy #2: cytarabine
- Chemotherapy #3: cytarabine
- Chemotherapy #4: cytarabine & busulfan
- Bone marrow transplant
It’s something that you should definitely not try to hide. You should not try to suppress your feelings. Be open with them. Be honest.
Tell people. Talk to people. You seek counseling, and you seek medical help, but depression, anxiety — there’s nothing wrong with it.
Go out there. Get the help that you need and deserve and think about your well-being first.Sasha T.
- Getting the Diagnosis
- Tests and Procedures
- Describe the bone marrow biopsy
- What were the tests and procedures that followed?
- Describe the bone marrow biopsy results
- How was the recovery after the bone marrow biopsy?
- Describe the CT scan
- Did you have to drink contrast dye for the CT scan?
- How long did it take to get the CT scan results?
- Is there staging with acute myeloid leukemia?
- Treatment Decisions
- Did you get a port or a PICC line?
- Describe the PICC line infection
- Describe the chemo regimen
- What were the chemo side effects?
- You had 3 additional rounds of chemo before the bone marrow transplant
- When were chemo side effects the worst?
- What helped prevent or reduce the side effects?
- How long were the infusions for those 3 rounds?
- What was the result after the 3 extra rounds?
- Bone Marrow Transplant
- Matching with a bone marrow donor
- Describe the bone marrow match process
- How long did the paperwork take?
- You ended up switching medical centers
- Describe the prep before the bone marrow transplant
- Describe the actual bone marrow transplant
- What happens after the bone marrow transplant?
- What are the side effects of the additional chemo for the BMT?
- After the Bone Marrow Transplant
- What was the follow-up protocol?
- How often were you going to the hospital?
- Describe the bone marrow biopsy after the transplant
- How were you feeling when you learned those positive results?
- Are you in remission?
- Maintaining your new immune system
- You experienced GVHD (graft-versus-host disease)
- What’s the follow-up protocol?
- Hair Loss
- Mental, Emotional, Financial Support
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
Getting the Diagnosis
What were the first symptoms?
It started back in November. I was just a normal college student. I had my classes, going to and from school. At the time, I was helping my cousin out a lot with her daughter because she was working. I would be at her house pretty much every single day.
At first I started noticing some really small bruising. It wasn’t really bad, though. It was on my leg, on my arm. Just little places here and there.
My cousin noticed actually that they started to get bigger and more awkward spots, like on my toe, on my finger, or I would get a massive bruise on my stomach, and I didn’t know anything about it.
Then in the beginning of December, I had a really, really big bruise on my lower back. It looked like a tire mark, like a full on stretched-out tire had run me over. My cousin is a hypochondriac. She’s super afraid of everything, so she was like, “You need to go to the hospital now.”
I was reluctant, but I finally agreed to go. Her mom took me, and I was there for a few hours. After some blood work, they told me that I have a blood disorder, which was a misdiagnosis. They gave me medication. “If you take this twice a day, it will go away on its own.”
About a week later, on the night of December 10th, which was my birthday, I was getting ready for bed. I had taken my makeup off, and I was getting ready to lie down. I could not lie on my right hip. It was insanely painful. It was excruciating pain.
I jumped out of bed, and I went to the bathroom. I looked in the mirror, and my hip was swollen out. It looked like a bowling ball was inside my hip.
My mom had woken up because I had all the lights on, and she was like, “What’s going on?” I told her, and she was like, “Oh my gosh. What’s going on? What is that?” I had no clue.
Luckily, that next morning, I had a doctor’s appointment anyway. It was a follow-up. She took a look at it and told me that the best thing for me to do was to go to the hospital as a walk-in. Otherwise, if she ordered an ultrasound or scan, they take a while to get the results.
Describe that first trip to the hospital
I went to the hospital, and we sat around for about 12 hours. My blood kept clotting, so they weren’t able to get results fast enough.
At about 1 or 2 o’clock in the morning, they finally told me that they didn’t know what was going on, they didn’t know how to help me, and they were going to send me to a hospital in San Diego.
I was 24 at the time. I was very, very afraid. I had never been in a hospital or in an ambulance before by myself. I’d never been in an ambulance ever. They were like, “Yeah, we’re gonna strap you in, and we’re gonna drive by ourselves at 2 o’clock in the morning.”
What do you remember from the diagnosis?
I was really, really afraid. I got there about 3, close to 4 o’clock in the morning. We did blood work, and a doctor came in. I could tell something was wrong. He was acting very sad or very concerned.
He put his hand on my shoulder, and he goes, ‘I’m really sorry to tell you, but you have leukemia.’
My expression just went completely blank. I didn’t know what to say. I didn’t know what to do. It reminded me of one of those situations in a movie where they tell the actor the bad news, everything drowns out, and your vision goes blurry. I had that moment.
I didn’t think those existed until that moment. Just completely in shock.
For a second, I thought I was getting pranked or lied to. I was like, “This isn’t happening. This isn’t happening. There’s no way that I could get cancer.”
I was a normal 24-year-old girl in college, who had never had any illnesses ever — besides allergies, but that’s pretty common. Then I went from having a normal life to being diagnosed with cancer overnight.
I was completely alone. My parents were back home, and I didn’t have anyone with me. It was just me, 2 doctors, and 5 nurses.
How did you process the diagnosis?
I didn’t really get a chance to process it right away. It was more like a quick, “Okay, you have cancer. We’re gonna be doing non-stop testing on you for the entire day.”
As soon as it happened, the doctor asked me, “What time do your parents wake up? We’ll call them and let them know.” I was like, “Oh, about 8 a.m.”
As soon as he walked out of the room, I was like, ‘There’s no way I’m gonna let my parents find out from a doctor. I have to call them myself.’
How did you break the news to your family?
I called my dad. He answered, and he goes, “Now what’s going on? Everything okay?” I was like, “No, not really. It’s a lot worse than we thought.”
He goes, “Well, what is it?” I told him, “I have leukemia.” He just kept repeating, “What? What? What?” Over and over and over again.
I was trying so hard not to cry because I felt guilty in that moment. I don’t like to be a burden on others. I wouldn’t say it’s a fear of mine, but it is something that I can’t stand — making other people feel bad about myself. I don’t want people to feel pity, I guess.
I told my dad. He woke up my mom. They immediately started crying. Then my 16-year-old brother woke up, they told him, and he started crying. I felt so bad. I didn’t even feel bad for myself for having cancer. I felt bad about putting the bad news on them.
I just felt this immediate wave of guilt. What have I done to my parents’ lives? I’ve made everything so much more harder on them. In that moment, I felt really, really stressed.
I felt angry and also just really upset that this happened to me because I didn’t want to burden my family.
Tests and Procedures
Describe the bone marrow biopsy
They told me that I was going to be having a bone marrow biopsy. I didn’t know what that was.
They explained to me that they were going to put a drill in my back and take out a piece of the bone marrow to test to see how far along the leukemia had started. I was completely freaked out because I’d never done anything like that before. But they were really, really nice.
They came to my room, brought me downstairs about 2 floors down in a wheelchair, and had me lay on my stomach on a bed thing. It was in a normal procedure room. It wasn’t in an office or anything.
They had to pull my underwear down, got a patch, laid it on my lower back a little bit below my butt. They had to mark it and numbed the area. I could still feel it the first time, so they numbed it twice, and then they had a big drill come in.
The worst part for me — and anyone out there who has been through a bone marrow biopsy — is the sound because you can hear the drill in your back. You may not feel it, but you can hear it. Just knowing that a drill tool is drilling into your back is terrifying. That was the worst part for me.
I would get pretty bad anxiety. At one point, I almost started crying, but I was lucky enough to have a really, really nice nursing team. They were there for me. They held my hand and told me, ‘Don’t worry. Everything’s gonna be okay.’
That really did help. But it was pretty terrifying for never having a procedure or a situation like that ever before.
Right after, they put some medication on it, and they put a little patch. You’re supposed to leave it there for 48 hours, and you can’t get it wet. It just falls off on its own pretty much after that. But I think the procedure in total took about 30 to 45 minutes.
What were the tests and procedures that followed?
After that they did a CT scan, then an ultrasound, X-ray of my entire body, and then an iodine solution. It was just nonstop testing the entire day.
The only time that I actually got to relax and sit down was that night after all the testing was done. They were like, “Okay. We’re gonna go ahead and leave you alone for a little bit. We’ll come back in an hour to do more testing.”
That was when I actually got the chance to be alone for a second and sit and think about what was happening. I was just like, ‘I can’t believe this is my life right now.’
I started my first round of chemo that night. It was pretty late, so it was probably like early morning the next day on the 13th.
Describe the bone marrow biopsy results
I want to say it was a full day. They told me that the type of leukemia I have is AML leukemia, which means acute myeloid leukemia.
That means that the leukemia cells were regenerating a lot faster than chronic leukemia, which means it goes a lot slower.
Mine were just coming really, really, really fast, and they said if they didn’t start the chemotherapy soon, it was going to be life threatening. Any cancer’s life threatening, but it would be more dire.
The cancer was only in my bloodstream. It hadn’t attacked my bones, but it was attacking the bone marrow, so I ended up needing a bone marrow transplant.
How was the recovery after the bone marrow biopsy?
It was okay. It kind of hurt to sit on my bottom. I’d have to lean to the side just for a couple days. I think maybe 2 days it was sore, then the patch fell off on its own. When I went to the bathroom, it was in the toilet, so it just kind of fell off on its own. It was okay after that.
Describe the CT scan
I don’t remember much about it, in all honesty. I was kind of in and out of it and really, really sleep deprived. I hadn’t really slept very much.
The only thing I remember was them laying me down on a bed, and I went into that tube. It was pretty much done and over with. It took about 30 minutes. That one wasn’t that bad.
Did you have to drink contrast dye for the CT scan?
Yes. That was the worst part. The dye was inside of this giant 2-liter bottle, and they wanted me to drink 2 of those in an hour. I can’t drink water very well. I completely forget to drink water sometimes.
That was the hardest part for me, just having to drink water all the time. You weren’t allowed to pee it out or anything like that. They wanted you to keep the water down and not throw up. I had to drink 4 liters in an hour. It was a lot.
It was nothing painful. They just had me drink the dye. Then they said, ‘Okay. Lie down for the CT scans.’
I went, and then they just had me lie on the bed. I think at certain points they had to tell you, “Hold your breath,” when they were doing the scan. That was okay. I got a little light headed, but it wasn’t anything I couldn’t handle.
How long did it take to get the CT scan results?
Those results came back pretty quickly. The doctor said that everything seemed fine from those, as fine as it can get when having cancer.
Is there staging with acute myeloid leukemia?
No. There’s only different subtypes. There’s AML leukemia, there’s AMM leukemia, ALL, etc. There are different types of leukemia.
How did you decide where to get the treatment?
I didn’t really get to decide. Our local hospital has an affiliation with Scripps Mercy, so as soon as they found out that something was wrong that they couldn’t figure out, they just sent me there. That’s where I had my first round of treatment done.
Did you consider getting a second opinion?
No, not really. As soon as everything just happened, they’d told me that chemotherapy was the only way to save my life. I was in that mentality of, “Okay, well, let’s get it done.”
I didn’t want a second opinion. I didn’t want to talk to my family about it. I trusted the doctor. He was really nice. He explained everything to me; he explained what was going on, what kind of leukemia I had, what was going to happen, how I was going to get the treatments, stuff like that.
He told me, “Our best chance for you to survive this, or to get rid of it quickly, is to have chemotherapy.” And I said, “Okay, sounds great.”
Your treatment center was on the larger size. What were the pros and cons?
The pros were the staff. I absolutely loved my nurses and doctors. They were the nicest people. They were just constantly coming in, even when they weren’t supposed to, to come in my room to talk to me, check up on me, and ask me questions. They would bring me snacks of sorts even though they weren’t supposed to.
They would bring me gifts and cards and stuff like that. I actually loved them.
What I didn’t love was the rooms. They were extremely small. I did have a fairly large family coming to visit me. I had my parents coming every single weekend. My brothers, cousins, grandparents, friends, aunts, uncles, and everyone would come at least every other weekend, if not every weekend.
I would have the smallest rooms, and they were so cramped. Nobody could sit anywhere, and the hospital food was also really terrible.
Is there anything you wish you would have done up until this point?
Up until treatment, the one thing that I would say that I wish I would’ve done is talk to people more about my initial diagnosis.
I kept my feelings to myself. I didn’t tell my friends or family. I wanted to make sure they were okay more than I was okay, if that makes sense.
Now that I think about it, that was probably not the best decision. I should’ve actually sat with myself and come to terms with what I was feeling and what was going on. Instead, I just buried everything down. I don’t recommend that.
If you’re going through treatment or you just found out you were diagnosed and you’re about to go through treatment, talk to somebody.
Either a family member, a friend, a doctor — ask if you can talk to some type of social worker that they might have on staff or some type of counselor or something, because it’s definitely something that you should not keep to yourself.
It’s the hardest thing to ever have to deal with and keeping that all down. Trying to make sure everyone else is okay, it did a lot of — I don’t want to say mental damage, but it’s just something that’s really, really hard, and I would definitely recommend talking to someone.
Did you get a port or a PICC line?
I had a PICC line and I did my treatment, 24-hour chemo for 7 days straight. It was a lot for me to take in for my body, and it was through a PICC.
After that, my PICC got infected actually, so I got the PICC taken out. I went through the veins. My veins were kind of shot after that.
Describe the PICC line infection
It was about 2 or 3 days after the whole round of chemo. The chemo’s 7 days. The PICC was working fine. About 2 or 3 days after that, they were just using it for blood draws or if I needed medication for having a fever.
I don’t really know what happened. I’m pretty sure it got cross-contaminated, and I had to take the PICC out. They were like, “Well, you’ve already done your chemotherapy round, so we’ll just do the rest of it through your veins.”
Describe the chemo regimen
The infusions were 24 hours. From the beginning of the day until the next time the next day, they would put the meds back. Every single day was really intense. At first, it didn’t really feel like much because it was just medicine.
What were the chemo side effects?
My body didn’t really know how to react. After the third or fourth round, my body started to get extremely exhausted. I was tired 24/7, my hair started falling out, of course. That was bound to happen.
I used to have really beautiful, long, black hair, and it just started falling out in clumps. It didn’t really bother me.
It surprised my family more because they had never seen me like that. But to me it was not really a big deal because I knew it was coming.
Then I started to deal with the nausea, the vomiting, and the diarrhea. I ended up getting a stomach infection. It was around my third week there, and something in my stomach had gotten inflamed. They didn’t want me to eat or drink anything at all for 2 weeks.
They were waiting for the infection or the inflammation to go down in my stomach lining. That was the hardest part of the whole situation.
You had 3 additional rounds of chemo before the bone marrow transplant
After the full week of chemo, we had to wait for the results to see if the leukemia cells had gone. It was just mostly a waiting game. It took a while to get the results.
I don’t know why. They had done a biopsy right after the chemo, and I wouldn’t get those results until I think 2.5 weeks after. It was just a waiting game, and it was awful.
Finally, at the end of December, they told me that the chemotherapy worked and that the leukemia cells were gone, but in order for them to stay gone, I was going to need a bone marrow transplant. I was released in January, and I went back into the hospital at the end of March of last year.
When were chemo side effects the worst?
My first round in December was probably the worst because that’s when my hair fell out.
I remember at one point I had a really bad fever, and I was aggressively, severely shaking in my bed because I was so cold. My feet were still hot, my body was hot, but I was freezing and could not function.
No matter how much I covered up, they told me, “You can’t be covered up,. You’re gonna get hot.” I’m like, “Yeah, but I’m freezing.” It looks like a back-and forth-weird side effect with that.
That was really bad, but that only lasted for a week. It was just so aggressive. I lost hair, I had the really bad diarrhea, and then I had nausea and vomiting.
That round was probably the worst of the side effects. When I did the other rounds, it wasn’t the same chemo. It wasn’t as intense; it was a bit more mellow. Those things were just the normal side effects, which is just the nausea and vomiting.
What helped prevent or reduce the side effects?
For nausea, the Zofran really helped. They gave me Compazine. That helped as well.
How long were the infusions for those 3 rounds?
The first day of chemo was 24 hours, then a 2-day break, then chemo for another 24 hours, then another 2-day break.
What was the result after the 3 extra rounds?
They told me that the leukemia cells are gone, but in order for them to stay gone, I had to do another round of chemo. So I did chemo again at the end of March, and then I did chemo around May, and I did chemo again in July.
That was when I had found out that I was having the bone marrow transplant in July.
Bone Marrow Transplant
Matching with a bone marrow donor
My brothers were tested in March, but neither of them were a match, unfortunately. They had to go into the donor system again around March or April. They found a donor in June, but they have to do all the paperwork, stuff like that, and the technicalities.
He had to actually go into the donate center, donate, and then they have to check you out or something and have it sent to my hospital. By the time I got the actual transplant, it was July 20th.
Describe the bone marrow match process
They told me back in December when I was still in the hospital during the first round that the chemo had worked and my leukemia cells were gone.
But the chemo had done such severe damage to my bone marrow that my immune system was pretty much gone. I wasn’t going to be able to produce any new cells, so in order to get back to where I was, I needed to have a bone marrow transplant.
They said that the best-case scenario would be if my brothers were a match. That way it could be quick and easy, done and over with. They tested both of my brothers, and they both came back negative. My brother Jacob was upset about it because he wanted to be a match and help me, but he [couldn’t].
They went ahead and were like, ‘We’re gonna put you in the system.’ I got the call in April when they told me that they had found a match, but because of all the technicalities, they had to sign in and make sure it was a private thing.
I don’t even know who the person is. All I know is he is a 21-year-old male from California. That’s all I know about him.
How long did the paperwork take?
It took from April to July, so about 2.5 months.
You ended up switching medical centers
I found out that the first place does not do bone marrow transplants, so they wanted me to go the UC San Diego Jacobs Medical Center.
Describe the prep before the bone marrow transplant
They called me in the end of June, and they told me that they were going to be prepping me and getting everything ready for the transplant in July. Around the end of June, they told me that they were going to go ahead and do more chemotherapy.
This chemo was different. It was chemo to prep my body for the transplant. It was 2 chemotherapies. One was the Cytarabine, and one had a different name. I can’t remember the name of it honestly. I’ve just done so many different chemos.
The first day of chemo was 24 hours, then a 2-day break, then chemo for 24 hours, then another 2-day break.
They also did blood tests. They had me do a breathing test. They made me blow into this thing, and I had to go to a certain level to make sure that my lungs were strong enough. They had me do a physical test. They had to test out my body mass, weight, height, and stuff like that to make sure that my body could support the new bone marrow.
All of that came back perfectly fine. They had me do an eye test to make sure my eyes were okay.
Describe the actual bone marrow transplant
It was more of a waiting game. I wasn’t sure if my family was going to be there or not. Luckily, 2 of my aunts and 1 of my cousins came, so I wasn’t completely alone.
They told me it was going to be very quick and easy. It’s kinda anti-climactic, honestly.
But we were just waiting around for the delivery of the blood, and then about 2 p.m., they finally came. They put the blood on the little thingy, and they hooked it to my arm. It was just slowly dripping for an hour and a half. Then it’s done and over with by like 3:30 or 4 o’clock. That was it.
It was totally like a blood transfusion. They were just transfusing his bone marrow into my body.
What happens after the bone marrow transplant?
I had to wait for my platelets to get back up to a normal level. Once that happened, I had to actually live in San Diego from July until November, because I had to go to the cancer center 2, 3, sometimes 4 times a week.
Me living so far away, I had to actually move close by the hospital, so I moved in with my brother. My mom was my caretaker.
What are the side effects of the additional chemo for the BMT?
I lost my hair again. That was the number one thing. I had already had hair growing back by that time. But because that chemo was so strong again, I lost all my hair. They shaved my head in the hospital at the beginning of August.
I just had really bad nausea and vomiting some days. Some days were really, really bad, where I couldn’t eat or drink anything for 3 days straight. Then some days were good, where I felt okay. I felt perfectly fine. It just depended on the day.
A lot of weeks had passed since the chemo, but the chemo was so strong that it was still in my system. There were just some days that my mom would make me something to eat. I would sit down, eat it, and the next thing I knew I was in the bathroom, or I was throwing up in the trash.
It just depended on certain days, because some days I was perfectly fine, I could eat whatever I wanted, and I didn’t feel sick.
After the Bone Marrow Transplant
What was the follow-up protocol?
I had doctor’s appointments with my oncologist, usually about once a week, and then I would go to the infusion center. If my magnesium level was too low, they would give me a magnesium transfusion, so that lasted about 2 hours every other day. That took quite a while.
Some days I needed more hydration because I was dehydrated that day, so I would do a hydration drip. I guess it just depended on the day. For most of the time that I was there, I needed hydration and I needed magnesium.
How often were you going to the hospital?
My mom and I were going 3, sometimes 4 days out of the week, sometimes 2 or 3, just depending on how my levels were doing.
Describe the bone marrow biopsy after the transplant
They did another bone marrow biopsy right after, maybe a month or 2 after. It went well. It was the same as all the other ones.
It was a little painful, but results came back that the transplant was working. It was doing its job.
How were you feeling when you learned those positive results?
Oh my gosh, I was so excited! I remember I was with my parents because they had taken me to lunch. The most recent one was in September, so it was just my mom.
My mom was with me, and I had a scan done. They told me that everything was going well, that the transplant was actually working, and that my new bone marrow was perfect.
I was just really, really excited because I was like, ‘I really hope I didn’t go through all of this for nothing!’ But no, everything turned out really, really great, and everything has been really good since then.
Are you in remission?
Yes, as of October 31st. That was whenever they told me that they have done all my tests and everything and I was perfect. Everything has been working really, really well, and I was allowed to move back home. I’ve been home since the beginning of November.
Maintaining your new immune system
Since my immune system is brand new, I have to take my immunization shots all over again. I’m kind of like a brand new baby.
At this point, I’m about 7 months old, they say. I’ve had 3 different immunization shots all over again, and I’m gonna continue to get them until I’m technically at 5 years old. Then my next one will probably be around June or July, at the year mark, so I have to get those done every other month or every few months.
You experienced GVHD (graft-versus-host disease)
Normal questions. Everything has come back great, except for about 2 months ago, I had been sick. I told them I had really bad dry mouth.
They said that’s a sign of GVHD, which is graft-versus-host disease. It means that the new bone marrow and my body are fighting because my new bone marrow and my body see each other as foreign. So they’re fighting in my body.
I’ve been taking medication for my mouth, because one of the side effects is dry mouth, sores, dry skin, just stuff like that. They’ve been giving me medication for that.
It’s gotten a little better. It’s kind of here and there. They gave me a mouthwash and some gel to put inside my mouth for sores. They prescribed pills to help with salivation. It’s been helping a little bit.
What’s the follow-up protocol?
My dad and I go to San Diego twice a month for follow-up. They do blood work and tell me, “Do you feel this? Do you feel that? Have you been feeling nauseous? Do you have diarrhea?”
- Immunization shots through 5 years
- Checkups twice a month
It’s been like that since November. Recently, my doctor said she was going to move it down to once a month, but then with the whole GVHD situation, she says she wants to continue seeing me twice a month. I do have this type of illness in my body, and she just wants to make sure it doesn’t get any worse.
Describe the hair loss
It was probably about 1.5 to 2 weeks after the chemo had already ended. For the most part, my hair was up in a bun, so I didn’t really think anything of it.
Once I started actually taking my hair down, brushing it, that’s when I noticed that the clumps of hair were just coming out of the brush.
Then I remember one day, my parents were there. It was my mom, my dad, and my brother. We were all sitting around, and I couldn’t reach back to brush my hair. I asked my Dad, “Do you mind brushing my hair for me?”
He was brushing my hair, and they were literally just coming out in clumps. He just would brush, put [the clumps] in the trash, and say, “Don’t even look at it; don’t even think about it. It’s gone. You can’t do anything about it.”
I was just like, “Okay, don’t look. It’s all right. I’m fine. Just keep brushing. Just get it out,” because I had a lot of tangles in my hair. My mom’s sitting next to me, and she was in shock more than I was.
I think it was in that moment we all realized how real it was for us. Up until that point, it was just me, sitting in a bed and getting medicine. Once you actually see the hair starting to come out, it becomes more real.
This isn’t just treatment for anything. This is treatment for cancer. Your hair’s falling out. This is happening. I think it was kind of a shock to all of us.
What helped with the hair loss?
I wore beanies for the first few months, but where I live, it’s so hot and humid. It gets up to 100 degrees during the summer. It was just getting to be way too much. I could not wear a beanie every single day.
I was at an oncologist appointment, sitting there getting ready to see her for the first time since I came home. This is in January of last year. I’m sitting there, and she was like, “Why are you wearing a beanie? You look beautiful!” I was just like, “I don’t. I feel ugly.”
I was completely bald at that point, because I just told my Dad, “I don’t want all these messy clumps and everything. Just shave it off.”
I was completely bald, and I just didn’t feel pretty. I felt like I looked like a man. I look like my dad because he doesn’t have any hair. I was just really insecure, not fully like myself.
[My oncologist] literally took the cap off my head and was like, ‘You are absolutely beautiful, and you don’t need this to be hiding.’ She’s like, ‘You know your hair’s gonna grow back, when it grows back. But until then, embrace your new look and embrace your new life.’
I was just like, “Well, she’s right.” So I stopped wearing beanies. I would wear them more when it was cold. For the most part, if I was at home or even if I was just at Walmart and it was too hot out, I would just go bald.
Was it empowering to go out not covering your head?
Definitely. I had a little photo shoot with my brother because he had a nicer camera than I did. I did my makeup, and I wore my bald head. He took a few pictures, and I posted them. Everyone was like, “Holy crap, I have never seen a more beautiful bald woman.” I was like, “Oh my gosh, thank you!”
It definitely makes you feel good about yourself, especially when you feel like, “Oh my God, I look like a man!” Or, “I look this way.”
I would even have people come up to me in Walmart, and they would be like, ‘Hi, I know you don’t know me, but you look absolutely beautiful with no hair.’ I would just be like, ‘Wow, thank you so much!’
I feel like now that it’s growing, I have a harder time than when I was bald. Now that it’s growing, I can’t do anything with it. I can’t style it. It’s just there. When I was bald, I didn’t have to do anything.
I really hope that men and women out there, they shouldn’t feel like they need to hide behind [anything]. My problem was that I felt my hair helped me hide. I didn’t feel a certain way about my forehead or about my face, my chin. I would just kind of move my hair in front of it and be like, “Oh okay, looks better.”
But once you have nothing, you have to embrace your face. Embrace every part of it. Your nose, your chin, your double chin, your eyebrows, your forehead. You have to embrace it all and be willing to love those parts of yourself.
Was it harder to lose hair the second time?
Not really, in all honesty. It was going to happen. They had told me, “Oh you might lose your hair again.” And I was like, “Just shave it.”
It was this length, right now. It’s a little full. It’s getting there finally. It was at this length, and then I was sitting in my bed. I had noticed that I had little pieces of hair on my pillow. At first I didn’t think anything of it. I was like, “Maybe some eyelashes, or something else.”
Then it started getting more and more and more. It was everywhere. I was like, “I can’t handle this. I’d rather be bald than lose my hair like this.”
I called one of the nurses in and asked if they could shave my head right then. She goes, “Oh yeah, we have clippers!” She did it right in my room while I was getting chemo. She just shaved it again.
Honestly, it felt a lot better. Because I hate the feeling of loose hair. It drives me insane. You know when I had long hair, I would find my hair on everything. It used to drive me insane.
Having all that hair gone, my pillows would be free of loose hair. It felt a lot better, and I was okay with it. It was gonna happen sooner or later.
You lost your brows and lashes the second time around
That was harder for me. My eyebrows are a very big part of my face. I’ve got some thick, bushy brows that I get from my dad’s side. It was something that I really, really liked about myself.
I used to have really, really long, thick, beautiful lashes. They just slowly all fell out. I think I had maybe 4 or 5 on each eye. My brows were so thin that you couldn’t see anything, pretty much.
That was the harder part for me, because the first round I didn’t lose anything but my head hair. Then this other round, I lost my head hair, my brows, my lashes, some of my leg hair, some of my armpit hair. Just random hair everywhere was just missing.
I took it a little bit harder than probably most people, because like I said, they are a big part of me. A big part of what I like about my face.
When they were missing, I felt kind of ugly. I felt naked. I felt just not myself. I was looking at myself, and I didn’t even enjoy doing makeup anymore, which is something that I do enjoy a lot.
I love doing makeup, and I wouldn’t even enjoy doing it anymore because I couldn’t wear mascara, and I couldn’t curl my lashes. That was when I first started learning how to put on fake lashes. Now they’ve grown back a lot, but I still like fake lashes.
Mental, Emotional, Financial Support
What was the hardest part of the cancer experience?
The hardest part for me was not having anyone to talk to who could relate.
That was the hardest thing for me. I could talk to my parents, my friends, my cousins, but they didn’t know exactly what I was in that moment.
If I told them, “Oh my gosh, I just had a really, really bad vomiting spell. Now my stomach is cramping, I feel nauseous, and I have a headache.” They don’t understand. They’re not gonna be like, “Oh yeah, me too. I feel the exact same way.”
I look in the mirror and tell them, “Oh my gosh, I miss my hair.” They can’t relate to that because they have beautiful, full heads of hair. That was the hardest part. It took me 7 months to finally find a community that I talk to. I have people on Instagram, Facebook, that I talk to now about these situations.
At that time, for probably about 7 or 8 months, I didn’t have anyone to talk to about this. No one that ever truly understood what I was going through. That was the hardest time I’ve had.
Survivorship brings its own challenges
I remembered feeling alone all the time, especially in the hospital. Because my brother was working, he couldn’t come. My parents couldn’t come all the time.
A lot of my friends and family didn’t come after the first round of chemo. That was when I had the most people come in to check on me.
After they heard that I was in remission and I was okay, they were kind of like, “Okay, she’s fine. She doesn’t need our support.” But I still needed their support, and nobody was really there. That was the hardest for me personally.
I had to kind of toughen up and realize that not everyone’s gonna be there for you. Not everyone is going to care the way that you think they should.
That was really hard for me to come to terms with and to kind of be like, ‘Okay, I need to stop expecting so much from people who don’t care as much as me.’
Of course people care. I’m not gonna say that they don’t, but they just don’t care to a level that I think that they should.
I need to stop having that kind of expectation of people. I learned to just rely on my small group of people: my parents, my brothers, a couple of my close cousins, and my best friend. That’s it. Those are the only people that I rely on. Those are the only people that I talk to when things are bad.
Other than that, I won’t care about anything for anybody anymore because, like I said, not everyone is gonna care in a way that I think they should. That was my problem.
If you’re lucky enough to have a community and have their full support, hold on to them. Not everyone’s going to message you. Not everyone’s going to text you and ask you how you’re doing. People have their own lives happening. That’s okay. That’s just life.
Were you able to reach out to people to ask for help?
At the beginning, no. I could not ask for help from anybody. I wanted to do most of this alone. It took me about 4, 5 months to even make a GoFundMe to ask for help.
In the beginning, I should’ve been like, “I need help. [I need] to ask people for help.” It look 4, 5 months for me to finally be like, “You know what? I do need this help. I’m gonna need help when it comes to moving to San Diego, medical bills, treatments, stuff like that. I need to ask for help.”
My brother finally convinced me to make a GoFundMe, and I was able to get some support, which I’m extremely grateful for.
Any advice for others in your shoes?
In the beginning, I didn’t want to bother people. That’s something that I would say a lot of people need to not do. Ask for help if you need it.
From your family, from your friends, from people on Facebook, people on Instagram. If you know that there are people out there who are willing to help, go for it.
Ask your community. In our local community, we have a cancer support group, and I didn’t start going to meetings until this year. I’ve had cancer all of last year. I didn’t go to any of the meetings because I didn’t want to ask for help. I felt embarrassed, I guess you could say. I didn’t want to be a burden to anyone. I kept my problems to myself and to my immediate family.
This past year, I was like, ‘I need to open up. I need to find people who are going through this like me. I need to share my experiences with others.’
I’ve been going to the meetings, and I’m able to really talk to others who are going through similar situations in my local community.
Paying for cancer treatment (financial toxicity)
I still get medical bills to my house that I can’t afford. I’m hoping some day in the future when I’m more financially stable, I can pay them back.
As of right now, they just continue to send them, and they just pile up in the corner of my house because it’s just not something that I can afford right now.
There’s a lot cancer patients can’t afford right now. It’s really unfortunate that we have to pay back something that saved our lives, but at the same time, that’s life. You have to pay back for everything.
That was the hardest part because we were definitely a lower-class type of family. My dad has a job, but it’s not anything special. My brother doesn’t live with us. He makes his own money. He’s financially stable, so that’s his money. We don’t have any means of having all this extra money to just throw behind it. We have the necessities, and that’s all that matters.
The insurance I had when I first got diagnosed didn’t cover my medical bills. It wasn’t until I had switched to the different hospital and I got switched to full Medi-Cal that now they paid off everything from this other hospital. But all of my previous bills from [the first hospital], I couldn’t pay for them.
Any last message to those going through a diagnosis of their own?
The number one thing is to definitely ask for help, look for support, look for that community, and reach out to others who are going through similar situations.
As soon as I found out I had this, I went through the Wikipedia tab or hashtag on Instagram just to look for other people’s stories and stuff.
I found a lot of young people around my age — in their 20s, mid-20s, early 20s, late 20s, even early 30s — who are going through the same thing and who are either in remission or going through their second round or going through the first round who are lost, just like I was.
I had absolutely no idea what to do, and if I could tell myself when I was younger to do it a lot sooner, I would have. But it doesn’t matter when you do it, as long as you do it.
Look for other people out there and reach out and say, “Hey, I have the same type of cancer.” Even if you have cancer in general, it doesn’t matter what kind. “What’s your advice? What do you think that I should do? How do you cope with it?”
Talking to others about similar situations who have been through the same thing or something similar is so much relief off your shoulder and off your chest. Just know that you’re not alone in this, and that’s something that I would definitely say.
Do it from the beginning. I looked up patients’ stories, and there’s people out there with leukemia who have shared their stories on YouTube. It’s just like talking to a friend. It’s like talking to someone who knows what you’re going through, that isn’t going to judge you or isn’t going to give you that “wow, I’m really sorry, that must suck, can’t relate” vibe or situation.
Be open. Be honest with what you are feeling. Don’t try to sugarcoat anything, don’t give yourself this fake kind of presence of, I am super happy.
Of course, I am happy to be in remission. I am happy to be alive. I’m happy that the bone marrow transplant is working and that I am better, but at the same time, it’s still very traumatic. It’s a very traumatic experience to have to go through this.
Especially when you are this young, because you have your whole life ahead of you, and then it gets put to a halt. It’s like, “Nope not anymore.” You thought you were going to be a college student? Nope, now you’re going to be a cancer patient.
It’s something that you should definitely not try to hide. You should not try to suppress your feelings. Be open with them. Be honest. Tell people. Talk to people. You seek counseling, and you seek medical help, but depression, anxiety, there’s nothing wrong with it.
Go out there and get the help that you need and deserve and think about your well-being first.
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