Saskia, 36 “Preservation”

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Biography

Saskia is a 36 year-old woman born in Nicaragua and currently working with low income families to support their kids in the education process. Upon discovering a lump, she began her breast cancer journey. Preserving her breasts were important to her. Therefore, her medical protocol included chemotherapy, a lumpectomy and radiation. She and her husband had not had children prior to cancer and needed to make some very important decisions in the area of family planning. She goes onto talk about her experiences and side effects like hair loss, digestive issues, and skin irritation from radiation. She was blessed to have her husband as her advocate and an extremely supportive family. In addition, she shares her positive experience from the support she received from work.

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ContributorSaskia, 36Read Full Bio

Biography

Saskia is a 36 year-old woman born in Nicaragua and currently working with low income families to support their kids in the education process. Upon discovering a lump, she began her breast cancer journey. Preserving her breasts were important to her. Therefore, her medical protocol included chemotherapy, a lumpectomy and radiation. She and her husband had not had children prior to cancer and needed to make some very important decisions in the area of family planning. She goes onto talk about her experiences and side effects like hair loss, digestive issues, and skin irritation from radiation. She was blessed to have her husband as her advocate and an extremely supportive family. In addition, she shares her positive experience from the support she received from work.

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Saskia is a 36 year-old woman born in Nicaragua and currently working with low income families to support their kids in the education process. Upon discovering a lump, she began her breast cancer journey. Preserving her breasts were important to her. Therefore, her medical protocol included chemotherapy, a lumpectomy and radiation. She and her husband had not had children prior to cancer and needed to make some very important decisions in the area of family planning. She goes onto talk about her experiences and side effects like hair loss, digestive issues, and skin irritation from radiation. She was blessed to have her husband as her advocate and an extremely supportive family. In addition, she shares her positive experience from the support she received from work.

My name is Saskia. I'm 36 years old. I was born in Nicaragua but came to the U.S. when
I was 3 old. I grew up on the East Coast, moved out to LA about five years ago, and I work in
education reform. I work with low-income families helping them learn how they can better
support their kids in the education process. I'm married, it will be five years in December. I come
from a big family. My husband and I are the only ones out here in California, and he, too, comes
from a big family, as well, but they are over in the mid-West.

My husband and I actually found a lump on my breast. We were on the couch just watching TV and decided to, you know, “oh, let's do a breast exam” and we found a lump. Maybe a couple months later I went and saw my doctor. We did blood work, ultrasound and a mammogram. They all came out inconclusive. I asked whether I should have the biopsy done, and she said “at your age there's not much that we should worry about; why don't we keep an eye on it and come back, come back later, maybe in six months”. So I went to a new doctor and my first appointment with him was, “I have this lump; it's not cancer; but maybe we can look into removing it because it's starting to bother me”. He sent me right away to a breast center where they did a mammogram. Right away they said it was cancer.

So I was stage 2B Estrogen positive and progesterone positive which is a good thing
because there are several options for treatment. My tumor, my lump, was about 3 centimeters. I
never thought it was something that would happen to me.

I got the needle biopsy done on a Friday so I actually didn’t get my results until Monday.
I had a whole weekend of just waiting. Monday comes around. I was at work and the
doctor from the breast center had told me to call around 3-4, which is when they were going to
have the results. I was in a meeting with my assistant when the doctor called me so she called
me a little early, and I stepped out right away. Luckily my husband happened to be there so I got
in the car; we put her on speaker. The news was it was positive for cancer. I think for a moment
everything just goes black, dark I should say. I went into shock. Of course I started crying. My
husband, luckily his questions were “what do we do next”, “who do we talk to”, “any doctors you
recommend for us to see?”. He was asking all those critical questions. Then I went home and
started making phone calls.

What actually what happened, it worked out really nicely was my husband took the role
of making the calls for the doctors. Then I started making the calls to my family members, I feel
like I'm truly blessed to have had my husband as an advocate and to have walked side by side
with me. He was a rock when I needed him to be. As I just mentioned it's almost like we
naturally fell into certain roles. I don't think I emotionally had it in me to figure out what were next steps right away and he helped us move quicker in the process. He went with me to all of the
doctors' appointments. I actually decided I wanted to be very open about this.

I called my boss right away. I had to tell him what was going on. I wasn't going to be able to go to work for a couple of days. He needed to know what was going on. Then I decided I wanted everybody in the office to know. My employer decided to create what's called a “sick bank”, and that is when other employees donate their sick days to this bank so that employees who are going through illness or anything like that can then access those sick days. I was able to go through my entire treatment process without having to go on medical leave. I honestly was really touched and blown away that they thought about doing that to help me out. And now there are going to be other employees that are going to be able to benefit from that. I was just really amazed at it.

So my husband and I don't have kids. We didn't have kids prior to cancer, and one of the things that chemotherapy does, especially for somebody at my age (age 35) is that there is a
possibility that it kicks you into early menopause. There’s a chance that you don't get out of
early menopause. My doctor strongly encouraged us to talk about fertility. If we wanted to have a family, we needed to consider fertility options. She suggested we go talk to a fertility specialist
and see if we wanted to do about saving my eggs. My husband and I talked about it a lot; we
looked into it. We decided that for us, fertility wasn't going to be the path forward and that when
we're ready to start a family we'll go through adoption. Actually, we're in the middle of the
adoption process right now. It’s a lot to think about and you've got to make decisions pretty
quickly. A couple of things as to how we decided not to end up with fertility: one, it costs a lot of
money; two, my cancer was estrogen positive. The regular ways of fertility (pumping your body
with estrogen to produce more eggs) wasn't going to be an option for us. We'd have to explore
some different options. And, three, it was going too slow…I wasn't going to be able to enter into
my treatment as quickly as possible. I really was at the mindset that I just wanted to start and
get this cancer out of me. Fortunately my husband and I had been exploring the possibility of
adoption prior to cancer so I think that helped make the decision for us. It was still hard but it
helped…all those things have helped us decide that adoption was going to be the path forward
for us.

Prior to going to see the breast surgeon for the first time, we came up with a set of
questions. Folks had advised us to come with questions and actually have your questions
written down because the emotion of it could take over and you might not get the answers that
you need. We did our homework and came with a set of questions just to kind of understand
“what is breast cancer?”. What could be the path forward in terms of treatment? My husband
and I had also discussed whether I wanted to try to conserve my breasts if that was a possibility.
That was important to me. I was obviously open to my doctor's recommendation, but if that was
a possibility that's a path that I wanted to take. That was about all that I had come into that
meeting with. I didn't really know…I didn't know much about breast cancer. I didn't know much
about cancer in general, so for me it was a learning time. Then just kind of trying to understand,
what kind of cancer do I have and what are my treatment options?

It had spread to my lymph nodes. When they did the mammogram, they saw something
in the lymph nodes so they actually did a biopsy of the tumor of the breast, the tumor and the
lymph nodes. They both came out positive so we knew it had spread at least to the main lymph
node under the arm. Not doing chemotherapy was not an option. I had to do chemotherapy
because of the size of the tumor and also because it had spread to the lymph node. I decided to
do chemotherapy first, for a couple of reasons: my doctor felt that there was a good chance that
I could just have a lumpectomy, and so she said with that path considering chemo
first would be good because sometimes you see the tumor decrease in size and it just makes
the surgery a little easier. Then honestly I also just wanted to kill it as quickly as possible, so I
think in my mind, I knew..I had been with cancer for a year-and-a-half more than that I was
aware of. I just wanted to get rid of it. I wanted to just take care of it right away. Because of my
decision to go with the lumpectomy, we decided to do chemo first, so my treatment was
chemotherapy, then surgery, then radiation. In the process of chemotherapy, my oncologist
mentioned to me that there's a chance I can do a clinical trial.

I actually have a friend who is a doctor; she works with pediatric cancer; so she had
told me that if there was a chance for a clinical trial. She said clinical trials are not for everybody
because you get poked and prodded and you get looked at and examined more than the regular
patient. But that could be a good thing. That means there's eyes on you 24 hours a day, and I
felt that I wanted that. And then, also, I felt that if I was going to be going through this process,
then I wanted to be able to at least contribute back..contribute to the medical side of it. If me
participating in a trial that was testing a certain drug was going to make it better for women 5,10
years down the road, then I felt like I that made it a little bit more important for me.

Chemo was tough. It was emotionally and physically tough. My first infusion..I was very,
very nervous. I didn't know what to expect. I didn't know if I was going to throw up right away
afterwards. You know, you hear all this stuff about chemo, and I actually fared pretty well for the
first couple of infusions. I also had decided that I wanted to try to work through my entire
treatment as much as possible. So I managed to be able to work about part-time. The first
couple of months I would be in the office three days a week and then home two days a
week, and then once it accumulated..and then once I got into the Adriamycin and Cytoxin, that
was a lot more difficult for me to actually go into the office.

You know, the biggest thing for me was fatigue. I'm a very active person. I'm just kind of
like nonstop. I have a super-packed schedule. I exercise. I love to spend time with friends and
family. Chemo knocked me out. I think there were probably two times during the process that I
felt like I was losing, you know, and it's not..I mean it's not a good way to think about it. Actually
somebody else told me this, which was another piece of advice that was helpful right before I
started chemo, was think about chemotherapy as something that is good for you because it's
killing the cancer. So you want it in your body, and those times when I was feeling defeated, that
helped me. It helped me think about it because even though it's this nasty drug, it's actually
going to help me get better. I had a lot of nausea. I had never had the vomiting which was good
but I did have a lot of nausea. They give you different pills, and it's kind of like stage one
nausea, you take this pill; stage two, stage three, all along. I ended up using a patch. You put a
patch on that's supposed to help you. It never went away. It got better but it never went away.
Then there's a lot of stuff that happens with your digestive system, which is also just
tough. There's constipation; there's diarrhea; and then you have to take pills to help with that;
and you’re constantly taking some type of medication to kind of help counter whatever side
effect I was feeling. I do have to share this… there's I think a little… right before I started chemo
folks were telling me, “oh, you better fatten up because you're going to lose weight when you
get into chemo”. So I was eating key lime pie, enjoying all my meals. Plus they say you're going
to lose your appetite so, you know, enjoy the meals you like to eat because you might not eat
them for another five or six months. I think there's a misconception with breast cancer. Women
actually gain weight.

One of the things that was very difficult for me was the thought of losing my hair. I remember in the beginning joking around with my husband saying, “who cares about my boobs, what about my hair”. I never really thought of myself as a vain person, and then I realized what I was afraid of: when I lost my hair, I would actually look like a cancer patient. That's what people would be seeing. They don’t. They can't see what's happening in my breast, but once you lose your hair…I felt like I actually became a cancer patient. I struggled with that. I went and got several wigs, even before I fully lost my hair, because I wanted to be prepared. Then the hair loss happens and it's just part of the process. It's still hard. My hair loss was a little different; it can happen to women have it different ways. You can either lose it all at once or you start to thin out. I thinned out and I guess was in a little bit of denial cause I was starting to do the front comb back. My husband finally took some pictures of the back of my
head, and said, “honey, you can't see this but this is what your head looks like; I think it's time for us to shave it”. So we did. I was fortunate because I had two of my best friends in town, the weekend that we shaved it. It was four of us in the bathroom with the razor going at my head. That made it easier to have those people who love and support you around.

The chemo hit my white blood count pretty low so I had to get Neulasta, which is a shot that helps your body reproduce its white blood count. So we had to wait a couple of weeks. Then I went to surgery for a lumpectomy. The worst part about the surgery was I had a really bad reaction to the pain medicine they gave me. That's actually the only time in the whole treatment that I threw up several times, but other than that, you're in the hospital; they come in, every hour. I just wanted to get out of there and go home and relax.

I probably waited about a month for radiation and then I had three weeks… sorry, seven weeks of radiation. That was every day, going in for just about 15 or 20 minutes, but it was a daily thing that you had to come in and get kind of zapped on the breast for 15 minutes a day. I did experience side effects from radiation, burning of the skin; the nipple was getting really burned and charred. I mean there was a point where I couldn't wear a bra anymore. They gave me these cool pads to put on the breast. I remember thinking I don't know that I can take
anymore radiation. I just felt like my nipple was burning. Luckily I was at the end of it. I had that thought and I was talking to the doctors. They were like, “you have just two more sessions, you can get through it. We’re looking at it; you're actually not as bad as other patients where we've had to stop. We're not at the point where we have to stop”. So we finished. When we get to radiation, it is seven weeks. Once you hit the five-week mark, you kinda know you're at the end, right? The fatigue kicks in again, though, and it's cumulative with radiation, but you're almost there. You're right at the end of your treatment so that kind of gave me the motivation to plow through.

I think it's important to share your experience and to share your story. When I think about my cancer journey, I made a decision to tell people about it, and that opened up kind of a whole new world where people were sharing with me their experiences and that helped. There was one other woman around my age who also participated in the clinical trial. She and I met, and it was really helpful to have somebody who was going through this process. She was a few months behind me; but somebody to exchange notes and talk to. I think it's important for people to have resources and to hear what other women have gone through because there's a lot of stuff out there that may be true. It might be one out of a thousand women that experience it. When you start talking to people and you realize that it's a sucky thing they go through. You can do it with a smile on your face; you can do it with a lot of the resources that are out there. Then you end up on the other side, probably just as strong if not stronger. I want women to know that. It's a scary process but you can get through it.

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