Hodgkin's Disease Videos - Corinth D



Watch as Corinth D takes us through her journey with hodgkin's disease.

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Video Transcription

Dealing with Anxiety

All right, one side effect, I didn’t really mention because I don’t really consider it a side effect was the anxiety and the sleeplessness. Like I said before, when the tiredness hit you, you were out, but when you weren’t experiencing that particular side effect, you could have some trouble sleeping. I know I did. I would have times when I’d just lie in bed and stare up at the ceiling for four, five, six hours. And I’d go to bed at nine o’clock and I couldn’t sleep at all. I remember watching the sun come up at like 5:00 A.M. after going to bed at 9:00 and just being like oh my God, why can’t I sleep? I talked to my doctor about this and he said it’s probably a psychological thing with all of the anxiety from your diagnosis, from not being able to go to college, from your friends freaking out, because my friends did kind of freak out, and all of this probably accumulates together. Your mind is buzzing and you can’t sleep. He gave me some sleeping pills for when it got really bad and I used those for a while. But after my first month or so of knowing I had cancer, that’s where it began to go away. I guess I sort of got used to the idea that I was a cancer patient. I had this, it happened, I just got to work through it. So my advice is just to, if you have the sleeplessness and the anxiety, calm down, things get better, they really do. You’ll get your treatment. You’ll get over it. Think of what you do after the cancer. Don’t focus on the cancer when you’re trying to sleep.

Change In Appetite

Like I said earlier one of my first symptoms was an extreme loss of appetite; it just up and vanished. I lost probably about 80 pounds during that time. And my doctor was freaking out because losing 80 pounds is not good, although it makes you look good, it’s not good medically. I had been trying to lose weight, but with the cancer that I had, it’s not recommended. But my doctor put me on some appetite increasers after I was diagnosed. They gave it to me along with the chemo and told me to start gaining back some weight. So I did. And all said and done I lost about 50 pounds, but my weight’s finally stabilized and my appetite’s back to normal, except now for some reason, I can’t really eat the three big meals. I have six or seven small meals or I’ll break up the big meals into a bunch of little meals. Like, say I wanted to have chicken nuggets and tater tots for a lunch, I’d have the tater tots at eleven and then I’d have the chicken nuggets at one and just go on like that.

Coping with Change

My suggestions for coping with change related to cancer are mainly to keep busy. Because I was 18 and had just finished high school I didn’t have a job. Most of my friends were off at college by this point because while they weren’t sick so they could. I had a part time job at a floral shop, but my doctor discouraged that because of the low white blood count, and he was worried that I would get sick. But I tried to stay busy. I took up cooking. I started learning Japanese. Actually, I didn’t start, I continued learning Japanese. Found some new shows on TV that I liked. Took up latch-hooking again, which is this really fun craft thing. You have this little hook and you wrap yarn around it and you put it through a design and it makes like pillows. Well, it can make pillows, but it’s really fun. And so I started doing that again. I hadn’t had time to do it in a long time. I did a lot of studying for a national competition that I had coming up with FFA, so that took a lot of time. Like I said, mainly stay busy. You’re going to go stir crazy if you don’t have a way to get out of the house. I got used to leaving the house about once a week and seeing nobody but my parents for a while. And then after that only seeing my doctor. I got to the point where I was excited to leave the house to go to the dentist. So try and arrange ways to get out of the house for a little while. But if you can’t find ways to keep busy, take up new hobbies. Take an online course. I took two online courses. I got As in both of them. So that’s my biggest advice for how to deal with the sudden house arrest.

Diagnosis

My primary diagnosis was stage four Hodgkin’s disease, which meant I had tumors. I actually had two of them. They were in my lungs about right here and right here. They were also afraid that it had traveled to my spleen and my liver. That wasn’t confirmed, but they don’t think it did. So I’m not sure why it was Hodgkin’s lymphoma because when you say, ‘oh you have cancer of the lymph nodes’, which is what lymphoma is, you expect there to be cancer in the lymph nodes not in a random spot A, and B, in this case my lungs. But I think it had something to do with the size of the cell or what kind of cancer cell it was. I know that’s why it was Hodgkin’s lymphoma and not non-Hodgkin’s lymphoma. But yeah, I was not expecting that when you’re 18 years old and you’re just graduated from high school, because the time I was diagnosed I had graduated. And you’re looking forward to college. And you’re all packed up and ready to go and ready to move on with your life. You’re not expecting to go to the doctor and be told hey, by the way, you have cancer.

Fear of Cancer

To someone who has a fear of cancer I would say - don’t be paranoid. I know that sounds really bad but there are some things you should do like get the screening like the breast examinations and the colonoscopy when you get old enough and all of that. Don’t go to tanning beds, those are bad. My mom got skin cancer from that. Wear sunscreen. Don’t eat too much fatty cholesterol stuff, you know, basic health stuff. But don’t go around being afraid of cancer. I read somewhere that if everyone lived long enough they would all get cancer. And if you do, then it’s not the end of the world. It puts a bit of a stopper on it for a while, but it’s not the end of it. I’ve gotten my treatment. I’m in remission. I’m planning to start college this January. Like I said, I took college classes so I could stay on track. And the world kept spinning. Be cautious about cancer and cancer-causing things. But don’t be paranoid. If you’re paranoid and you’re afraid of everything because it might cause cancer, then you’re really not going to live that well. So cautious, not paranoid.

Life Before Cancer

Before I experienced my first symptoms of Hodgkin’s lymphoma I was pretty much just your normal high schooler. I was in my senior year of high school. I was active in my local FFA chapter. There was really nothing remarkable going on. It was just me hanging out with friends, studying for school, being excited to graduate and go on to college. And, of course, that got delayed a little bit thanks to certain medical conditions.

Lowest Point

My lowest emotional point came when probably two of the biggest things that I went through in my cancer journey just sort of collided. A couple of days before I was supposed to start college, before I was diagnosed, I had gone to orientation. I had signed up for my classes. I was all ready. And then cancer. I had to cancel on all of that. So a couple of days before I was supposed to move into my dorm my hair started falling out which you can see it now, it’s short and a little out of control. But it used to be a lot darker and a lot longer and really curly. It was probably about here-ish. And I loved my hair. I had been growing it since I was ittle and it was part of my identity, was my long curly hair. I used to have people come up to me, and they’d pull my curls just to watch it bounce because I had those types of curls that when you pull them they just spring, and it was really cool, and I loved my hair, and it started falling out, and I was unhappy about it. And I decided no, I’m not going to just sit here and watch my hair fall out. And I’m not going to be upset that I’m not at college. So what I did was, I went out and got a wig and I cut off all of my hair. Like I said, it was pretty long. So first I did the pony tail and I donated my hair to Locks of Love. And that did make me feel a little better and then what was left I had shaved off. So I was completely bald which as a girl feels strange. And as a girl who’s always had really long hair felt even stranger. So I was dealing with - I really didn’t like how I looked without my hair because was part of my identity. It was. So when that was gone I got upset. And then add on to that, I lost my chance to go to college for a while, which I had been planning about my college life since I was in seventh grade. When I was in seventh grade I had folders on colleges that I kept in my room. So losing that bit of my dream was just hard. It was really hard, but hair grows back. I got probably two inches going on right now. And it still feels weird. It’s a lot easier to take care of though. And my college put my acceptance on hold, and I’m starting in January, and I’m all signed up for classes, and I’m waiting for my dorm assignment. And I’m excited to be able to go and be over this. Probably what got me through all of this was my best friend Laura. I talk to her pretty much every day and she hadn’t gone away to college yet because her college started in January. So she came by and I talked to her. We talked on Facebook and talked on the phone. Whenever I’d get upset, I’d call her and talk to her and she was amazing. She’d always talk to me no matter what she was doing. And then just the idea that hair grows back, time moves on, you’ll be okay. You’ll get to go college. It actually was kind of a good thing because I spent my time researching colleges and I think I’m going to go to a different college than I originally planned for my master’s. So that’s good. And sometimes you just got to keep moving forward no matter how hard it gets.

Metastases

My Hodgkin’s disease did not become metastatic.They caught it before it did that. Metastatic means it traveled to other parts of the body and you had different tumors growing in different organs. Like I said, they thought it had spread to my liver, my spleen, but they decided that it hadn’t. They had got it before it began to form tumors. So it stayed mainly in my lungs which like I said, I had one on each side of the bronchioles. I actually had to get a biopsy done, which is this scar right here. So yeah, tumors in the lungs. Fun.

Place of Care

I was treated at a place called Upstate Medical which is a really nice college hospital in Syracuse, New York. Like I said, it’s very nice and I stayed in there for my hospital stay. I was there for about a week. They have good mashed potatoes. But it was nice. The people there were nice. The treatments were quick and everything went smoothly other than some confusion over whether I was pediatric or not because I was 18 at the time this happened, so they’re like she’s a kid, no she’s not, yes she is. But as for my actual chemo treatments I went to an off campus treatment center called The Hill, which is the small little place near upstate that’s affiliated with it. And you go in and they have their own little treatment center. The nurses there were really nice. My nurse Anne was amazing. She’d always talk to me and she was funny and it wasn’t so bad to be there. And they’d give you free soda. That’s always a plus. But as for the actual treatment considering my situation it wasn’t that bad. Of course I would rather not have to get chemo, but if you’ve got to get it, you’ve got to get it.

Side Effects

My chemotherapy side effects were relatively mild compared to what most people get. My doctor told me I was very lucky. The first couple of days after I got treatment, I would be nauseous. I threw up a couple of times. Really bad diarrhea. And some day’s I’d just lose my appetite. The really bad one though, is the exhaustion. You’re just, ‘oh, I don’t want to get out of bed. I can’t move. I can’t do anything. I’m so tired.’ And during those days I would mostly stay in bed and sleep. I’d sleep like 18 hours a day because I was just so tired. I’d get some flu like symptoms; I’d get really cold, I’d get the shakes a little bit, I’d feel achy and that wasn’t much fun either. I was told that there might be some other side effects like lost feeling in your hands or feet, a lot worse nausea than what I got, headaches, dizziness, anemia which I was all ready anemic so I didn’t really have to worry about that one. But side effects, I was pretty lucky in side effects. So hopefully I pass that on to whoever’s watching the video.

State of Condition

At this time I consider my Hodgkin’s disease to be in remission. As of my last PET scan, the tumors are completely gone. My oncologist wants me to finish up my chemo regime. And then every six months or so he wants me to come back and get a PET scan, make sure everything’s okay but he says yeah, I’m pretty much in remission right now. So, yay.

Symptoms

The signs of station four Hodgkin’s lymphoma that I had were actually quite a few. My first one was my appetite. It disappeared. It wasn’t there anymore. Really, I couldn’t eat. I became extremely anemic. At one point I passed out in school because I was so anemic and I stood up and I just whoosh. I also had a pain in my lower right side about right here. That just wouldn’t go away. Yeah, that’s mainly it.

Treatment Decisions

So when they were trying to figure out what was wrong with me and they couldn’t for a long time, I think, it was about four months where they were just running every test they could think of. Finally, I had an x-ray done on my chest and they saw a spot in my lungs which led to everything else. But they saw the spots on my lungs and they’re like, okay, we think something’s up, we’re going to admit you to the hospital and we’re going to biopsy this. So I was put in the hospital after some weird experiences, where they couldn’t decide if I was pediatric or not. I was taken down, they did the biopsy. They knocked me out, and apparently they put a tube, a camera and some sort of, something to grab a piece of the tumor down my throat and that caused my throat to be sore for a couple of days, but that’s about it. And they pulled it out and they’re like okay, yeah, this is definitely cancer. We’re not sure what kind of so we’re going to run some more tests. You’ll get those back in a couple of days but until then we’d like you to stay in the hospital. So I did. And I had a bone marrow biopsy which, oh my God, bone marrow biopsies are not fun. They hurt really bad. I think that’s probably the worst thing I’ve had done during my entire cancer thing was that bone marrow biopsy. When people say the needles are this long they are not kidding. But yeah, they got a sample of the bone marrow to make sure that the cancer hadn’t spread there. And they said, okay, it’s confirmed it’s cancer. You’re going to need chemotherapy. So we’re going to go ahead and give you a port. A port is a little device, which mine is right here. My shirt won’t pull down low enough to show that but there’s a scar there too. And, once again, they knock you out and they just open up right here and they put in this little catheter thing and connect it to an artery or a vein, some sort of blood transport thing in your neck. And that way they don’t have to put the chemo through your arm and they can just pull the blood work right out of there, put the chemo through there. If you’re ever diagnosed with cancer and you have to go through chemotherapy, definitely get a port because I had one treatment where they had to go through my arm. It took twice as long and it hurt. It really hurt because the chemotherapy I think they said it irritated the muscle or something and it caused the stinging pain and it’s just not good. Go with the port. They help. Anyway, after my port surgery my doctor whose name is Dr. Coyle, he came back and said it’s Hodgkin’s lymphoma. We’re saying it’s stage four. And there’s a couple of options you can take. The first option is you can get the standard treatment which is AVBD chemotherapy, which is four different chemotherapy drugs. They give it to you one at a time along with some antibiotics and some other stuff and you get twelve treatments of that. Or not twelve treatments but twelve cycles which is () treatments for a cycle, so that’s twenty-four treatments. I’m about three-fourths of the way through. I have two more treatments, one more cycle. Or I could do a clinical trial which they would try the AVBD for about half the time and then if that starting working then you’d keep on it, and keep going. But if it didn’t work they’d give you a stronger dose which was called Triple B. Don’t quote me on that, though. But I was nervous about the possibility of clinical trial because well, it’s a trial. It’s not completely okayed. And I just wanted to get this over with and move on with my life. And there was going to be a two-week wait if I did the clinical trial. So I said give me the AVBD. And they gave me the first treatment in the hospital. They didn’t use my port then because I was all ready hooked up to an IV because you’re required to be on an IV if you’re in the hospital. So I got my first thing of chemotherapy. It went pretty well. And the doctors said that I could go on and go home so I did. And I’ve had several doses since then. Like I said I have two left and then it’s off to college. Yay.