Diagnosed with leukemia... confused. Anyone else been there?Hey everyone. I'm a 21 year-old college senior, and I was just diagnosed with leukemia a couple of weeks ago. I got a little lost in all the medical jargon, but basically I have ALL (Acute Lymphoblastic Leukemia), and I've had it for quite a while without knowing. I had no idea. I got tonsillitis (that presented with very swollen lymph nodes in my neck), which the doctor thought was a presentation of mono, so I ignored the fatigue and aches afterward thinking that was what it was. I then noticed that I was anemic, which the dr. said could be a result of mono. Basically I was always dizzy and weak, and looked pretty pale. It was still manageable, though. But a little while later, I noticed this weird fluttering in my chest and throat, and the feeling that my heart was beating really fast - it didn't hurt, but it was uncomfortable. It happened almost every night for a couple of months, and then it started going away slightly and getting more rare. I knew this could be a side effect of anemia, so didn't pay it much attention either. No one seemed to be worried. One day, though, I felt a sharp, quick pain in my chest, right at my heart, like a bubble inflating without enough room (if that makes sense). It went away quickly though, and after some quick research I found that it's pretty normal for this to happen occasionally.
For a while I kinda felt okay, but then I started noticing headaches, lightheadedness, and dizziness - and I was really tired. I used to get migraines, and I'm a college student, so I'm usually tired anyway, but something felt *wrong*. I couldn't put my finger on it. I started getting mild bone and joint aches, in random places (such as my thumb, and especially my legs, which got sore), and would get the chills even when it was warm. I also started getting random sort of pains, though not severe, in my chest and abdomen that would only last a few seconds. Then, I got a really bad bronchial infection that made me lose my voice for a whole week - again, I was just prescribed medicine and sent home.
Then came the weird bruising. I still don't have the petechiae (the characteristic red dots on the skin), but I started noticing bruises on my legs and arms that seemed to come out of nowhere. One, on my leg, was a strange shape - small, not raised, not sore, but just *off*. It wasn't anywhere that I had hit it recently, and it stayed there for WEEKS without fading. Then I saw a bruise on my foot, which is weird, and they soon covered my knees. I also developed a dry, deep cough, and stomachaches and diarrhea. I finally went to the dr. and basically begged for blood work, even though I wasn't presenting with much (leukemia usually involves night sweats and more visible swollen lymph nodes, and the one on my neck had visibly gone down since the tonsillitis), and after abnormal counts and a battery of painful tests that I won't get into here, I got my diagnosis.
I went through that just to illustrate how out of the blue this was... all these common symptoms that doctors never even thought to connect to leukemia. Anyone that reads this and has similar symptoms, please talk to your doctor! The tonsillitis and infection were a result of a weak immune system, and the heart palpitations were directly related to the anemia (caused my leukemia, NOT mono!) Unfortunately my form seems to be really aggressive and requires immediate treatment.
I'm just really scared, and unsure of what to do. I'm still in school, and dropping out seems like it would be giving up on my life... all my friends are like walking on eggshells around me, and my parents and sister are more devastated than I am. Has anyone else had experience in how to make your family feel better about the situation? It may sound weird, but that's my biggest worry. And I'm not trying to throw my problems on you either! I'm actually okay, and pretty hopeful at this point. Maybe that's just because it hasn't set in yet, I don't know. I'm not really afraid of death either - I try not to think that far ahead, but of course it enters your mind! I just want to hear from any of you that may have had a similar experience. What's weird is that I was sort of prepared - this sounds insane, but I had almost a prophetic dream about it months ago. In the dream, I was dead and a ghost, talking to a friend of mine who had just died in the dream from falling down wooden stairs (I've already warned him to be careful on stairs, since I dreamed he was dead!), and when he asked what happened to me, I calmly said that I had ALL. This is strange because at that point, I had never heard of that (I thought leukemia was leukemia, basically), and had never done any research. WEIRD. Basically I'm just really confused now!
AM
yep but I have a different cancer
tell your teachers so you dont get in trouble for missing school and tell your parents your fine and want to be treated like normal and try to act fine if you can cuz otherwise they worry and act weird
Judas Totally Pwned Jesus
I am in a really similar situation, I'm 20 and I was diagnosed with ALL in Feb. of this year. However, my only symptom was the petechiae, and in fact I was diagnosed by a dermatologist I had gone to see for the spots! I felt the same way you did, I wasn't afraid of what was happening, and my family freaked out WAY more than I did. The really good news is that ALL is very treatable and has a very high survival rate in younger people like us so that should calm your fam (Although because Leukemia is rare in people our age too, I was placed in a special protocol that is essentially an experimental treatment plan that is much more rigorous than normal, so you might have to deal with that :/) Also I had to drop out of college because the risk of infection from other people is high in places like that. But if you wanna talk more, tell me and I'll give you my email :) Good luck with everything, the road ahead is long but its one that will leave you stronger in the end!
satty jr
I'm so sorry to hear that you are sick. :(
I wish you the best. It' s so admirable that you are so strong though.
And thank you for the info!! I have been feeling strange for a while too, and I'm a college junior, (it may be just in my head), my heart acts weird, especially at night, I feel it in my stomach quite strongly. I've fainted in the past out of nowhere, and I have "dangerously" low potassium, the doctors don't know what it's from, and I have all the weird pains with my throat too. Although I have allergies and post nasal drip, I have a weird pulsating/fluttering pain in the back of my throat that developed within the past year, it's different, and I seem to have swollen glands now at the moment too. I also have had hip pain for a long time too, and really bad headaches...
I get the stabbing pain in my heart/lungs too, but I think it's just asthma acting up (I had it 6~7 years ago)? And strangely, I'm not sure why I clicked on this link?
I'm probably just imagining things and problems, but who knows?
If you think you need to, take a semester off from school!
And again, I wish you the best of luck!!
Stay strong and remain positive!
starxshineox
I'm so sorry to hear about what you're going through. It's definitely a struggle; I know that much. I'm 17 years old and was diagnosed with brain cancer last June. It's hard. A lot of my friends avoid me, not out of spite, but for lack of any encouraging words. I found that the best thing to do is to tell your family and friends to treat you as normally as possible. Obviously, things will be different. There's no question about that. But there will be times during treatment that you are feeling so down, and no one will know what to say. I would just say, hey, I may have cancer, but I'm still the same person. You might even want to tell your friends that they don't have to say anything. It might be a relief for them because they might avoid you because they have no idea what to say. You will have a sense of normality with your close friends, talking to them the same way you always have. The way I've actually gotten through with this is by talking to a teacher that I've grown really close to. Her mom had cancer, and in a way, it feels good just to talk to someone who's not part of your everyday home life, and to get a different perspective. You know? I'm not sure how college works, but you can probably leave and come back once you're better, or get a reduced work load or something. It's funny that you say you try to make your family feel better about the situation, because that's something I haven't learned how to do. I know my family is upset, and it's really hard to know what to say. Sometimes, if I'm not feeling well, I'll tell them I'm okay. It's good that your hopeful, don't think about dying. Just stay strong and take it one day at a time. It's normal that you're confused, I'm still confused. I don't know if it ever really hit me that I have cancer. I don't know if it ever will. I just try to find something positive everyday, even if it's a little thing. I think of all the people who I have in my life who will support me no matter what, and I just remember that even though cancer is a terrible thing, everything happens for a reason and everything will work itself out in the end. I sincerely wish you the best of luck. If you ever want to talk, you can email me at starxshineox@aim.com
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