What is Glioblastoma Multiforme?
Where was your cancer located?
How did you stay positive during your treatment?
Should I get a second opinion if I’m diagnosed with cancer?
What is radiation treatment like?
What is Chemotherapy like?
Did you lose all your hair? Or more commonly “What did you do to your hair?
Do people treat you differently after you were diagnosed?
Did you have headaches?
What types of foods can you or can't you eat while being treated?
What form of assistance or show of support (gift, flowers, time, monetary assistance) was the most beneficial for solely your mental wellbeing?
Was it helpful for you when individuals mentioned alternative therapies or did it frustrate you?
When faced with a chronic, debilitating, or even life threatening illness sometimes an individual can feel alone, yet they don't have the physical or mental energy to spend time with friends and family, or even to carry out a coherent conversation on the phone. How did you, in your personal struggle, deal with the loneliness?
Did you ever lose your sense of purpose, and if so, what helped motivate you to keep fighting?
What was your most embarrassing moment during your treatments?
Now that you're in remission, what do you now do differently than what you did before you were diagnosed with cancer (ongoing treatments, diet, exercise, any ongoing fears for the future, etc.)?
Were you given options on your treatment?
How to stay/think positive

           

           

What is Glioblastoma Multiforme?      Back to Top

Glioblastoma Multiforme, or GBM, is an aggressive form of brain cancer that has a very low survival rate, statistically. However, I and not a statistic and neither are you!

           

Where was your cancer located?      Back to Top

My cancer was located in the right frontal lobe. This is the center for functions of voluntary movement including walking, writing, drawing, all the fun things in life! I also recently determined that a lot of my issues of making people angry or causing a ruckus are probably from the fact that it also determines involves the ability to project future consequences resulting from current actions and the ability to choose between god and bad ways of handling those situations. It also affects the area that stores long term memories. Overall though, besides the inability to act like other people all the time, control my emotions properly, struggles to remembers things, I think I did pretty well in the end. My original diagnosis was never walk, no drawing, and I would never do art again. They were wrong and they could be wrong for you too!

           

How did you stay positive during your treatment?      Back to Top

This one is much harder to answer, I don’t know how I stayed positive, I had a lot of bad news in a short time, but I did and you can too. However, please understand positivity is not a 100% 24/7 use it or lose it feeling. It is alright to have a rough day, it is perfectly fine to cry and even to be scared. For if we did not feel these emotions than cancer would have already won. The most important part is that at the end of the day, you know in your heart that you are stronger than your cancer and that you will beat it. This is positivity at its best. Even when I have bad days now, I know that things are going to get better and that everything will be fine.

           

Should I get a second opinion if I’m diagnosed with cancer?      Back to Top

I have gotten this several times in my life. I think if you feel the need to get a second opinion then do so. My case did not allow a second opinion; I was diagnosed with a tumor at around 8 in the evening and in surgery at 5 in the morning. However, I know quite a few survivors who have been misdiagnosed and their cancer status was ignored. So, I am not a Dr. and I cannot give medical advice, however from one survivor to another, listen to your body, if it tells you something is wrong and they won’t listen, go to someone else. This is especially important in women; if they tell you something is normal with your body but you feel it is not, go see a gynecological oncologist. Make sure to take control of your medical situation and do not feel like a back seat patient, I often felt like this and it always ended badly for me! :-P

           

What is radiation treatment like?      Back to Top

I have been asked this question many times, and it is a difficult one to answer. My survivor friend Oliver explains it as “Have you ever been neutered?” Obviously not, so when you say “No”, he pushes “Have you ever had a pet neutered?” Probably so, then he finishes with “Well, it is not as bad as that” I will attempt to be a little more helpful than that, but try to remember Oliver’s words of wisdom throughout this website as they are very helpful in making light and achieving that positive attitude. Treatment is different for every person, but it is also the same for everyone. Unless you have been through it before, you have no idea what it will be like. My cancer was strange. I did spot treatments (focused on my right frontal lobe) for almost two months. I was worried about how I would feel afterwards. For the treatments which were 9 sections of 5 minute I was strapped into a machine which spun around me and made the craziest noises, like creepy animals in the woods, I was fine. It was not until after I had finished my first month that I started to get very tired. I was on steroids which not only caused me to feel like I was starving and eat everything in sight (causing as 40 lbs weight gain), but also made my legs and arms incredibly weak. I would fall for no reason. I feel going up the steps, I feel walking on the flat smooth flooring on the local library. My legs would just give out and I would go down like a ton of bricks. My face swelled up like a balloon. I was informed that these symptoms were known as “moon face” and “noodle legs”. The actual radiation treatments were not bad. My first day at the cancer center, they made this plastic mesh like mask for me out of a wax like substance. It sat on my face for about a half an hour until it cooled, and it made a mold of my face. When I went in for my treatments I was placed on a slab, I had a triangle of foam under my legs to keep them from getting tired and I had a blue ring to hold onto to keep my arms from getting tired. The mask was placed over my face and then bolted to the slab. It was not comfortable, and as I gained more weight they had to cut the bottom a bit so I could fit into the mask. When I left the treatments I had little triangle marks where the mask had pushed into my face. Radiation makes you tired and weak and when you finish a treatment you just want to go home and sleep, which is what I mostly did during those days. It was mainly after my treatment was over that I really felt the whole strength of the treatment. I would try and take a bath and my then fiancé would have to help me out of the tub or he would have to help me dry off after a shower because my arms were too weak to hold a towel. If I got up to fast from a chair, I would almost pass out. It was very difficult to get around by myself, so I advise a caregiver if at all possible during this time.

           

What is Chemotherapy like?      Back to Top

Chemo is one of those things that affected me the worst, but that is different from most survivors I have met. My chemotherapy was in a pill form called Temodar. I took 4 1000 mg pills a day in which I had to take 3 stomach medicines to overcome the nausea. I would take them in the early morning (sometimes I would go to bed afterwards). They had to be taken with a full glass of water and on an empty stomach and I couldn’t eat for an hour afterwards. It was rough to be on steroids which severely boost your appetite and a pill that doesn’t allow you to eat. The morning dose was not so bad, I would take it and go back to sleep and then wait until I woke up to eat, but the night time dose was horrible. It would be 3 in the morning and I would be eating because I had to wait until my stomach settled in order to attempt to satisfy my hunger pains. The one time I did not take my lifesaver stomach medicine, Kytril, I was vomiting nonstop for two hours. I threw up so much I chocked on it. Chemo made me so weak for so long. I had to cut my treatment two months short because I because so anemic. I had to get a platelet transfusion, which I was allergic to and caused full body hives (but that’s another section), and I was able to go to school and sort of participate until my chemo week. I would come to school late on those days, but still managed to go. I took these high doses of chemo for one week and month for 10 months. I got terribly sick. I got pneumonia and missed the Harry Potter release party. I got petikia and got lectured by the ER staff that I had a platelet count of 7! I gained so much weight none of my pants would fit, and I could not hold a pencil without my hand shaking like crazy. I know that my case is different because I was on pills, but the effects of the pills are much like those of an IV. I am sure someone here can add to what the IV treatments are like.

I found this website during my research for this website and it is dedicated to chemotherapy questions. Please check them out for more general chemotherapy information. They have a lot of information there! Their section on side effects would have been very helpful for me as I suffered from anemia. I could have found out what petechiae was in time to not be lectured!

           

Did you lose all your hair? Or more commonly “What did you do to your hair?      Back to Top

Since I was so positive about my experience I found that I had to change my attitude to not embarrass people. I lost only the front and part of the back on my hair. I lost only the places where the radiation was concentrated. So I had no hair on one big patch and then long hair on the side. I did not care if I lost my hair. I am an artist and I did not care if people started at me. I dyed some pink stripes in my hair and had a go at radiation. It took a couple of weeks for my hair to fall out, and when it did it came out during the shower in nice little handfuls. I went to school just as I was. I was not embarrassed. I was 21 years old and I could stand up for myself. The problem is I have what I have come to realize as a wicked sense of humor. I didn’t start wearing a hat until an old friend of mine who I had had art classes with came to me and laughingly asked “What did you do to your hair?” I being incredibly wicked but not realizing it laughed and said “I got cancer!” I was laughing so much, and smiling, but he was not laughing. He was not smiling. I decided from that day on that I would keep my humor but at least wear a hat so that not so many people would be embarrassed by asking me. I think many people do not know how to act when they know you have cancer, let alone when they think you just did something crazy to your hair and you drop it on them like a bombshell. ^_^
The hat did make me angry though. I would go to Walmart and since I was so weak, my sister would push me around in the wheel chair and I got the most horrid looks. People would stare at me like I was some lazy punk teen taking the wheel chair from the poor old Walmart shopper who needed it. I was this horrible inconsiderate person. It was very degrading to be in the chair and have people look at me like that. Some people will always judge you like that, but if I had taken the hat off, it would have been different. If I had touted around in my Survivor shirt then they would have treated me differently. That is one thing I really came to hate during my treatment, you are only valuable are acknowledged properly and with respect when they KNOW you are a survivor. That is not how we should treat each other!
I now wear knit hats all the time, when I was sick I wore a bucket hat. If you are concerned about the way you look or just want a really cool knit cap, check out our Beauty and Self Image area in the Love and Romance section.

           

Do people treat you differently after you were diagnosed?      Back to Top

Yes, people will always treat you differently after your diagnosis. It is just a sad fact of life. People will assume you are weak and that they cannot hug you or touch you. It is up to you to change their mind. If you are too tired, don’t be ashamed. Just tell them the truth. Like I stated about the hat, in my history, if I announce that I am a survivor people treat me differently. I do the Relay for Life every year, and people often wonder why I do not wear my survivor shirt the whole time. I change into my team shirt because I do not want people to treat me differently. I want people to be nice to me because it is the right thing to do, not because they feel sorry for me. One big thing you will receive from the moment they tell you “you have cancer” is tons of sympathy. For me, this does not help me. I do not feel sorry for myself and neither should anyone else.      
My first Relay, Oliver and I had the most innovative booths (a car bashing booth, and a swirly booth). They made us a lot of money for the American Cancer Society and everyone had so much fun. We were treated so poorly by the volunteers it was appalling. As my wonderful sister said “I don’t see them wearing a yellow shirt. We have two survivors on our team; they need to be nicer to us.” It was then that I realized that since we had our team shirts on and not our yellow survivor shirts on that people were treating us like they would any other young person. We were actually told that we were not “representing the Relay for Life well”. We: the survivors, who know what it actually feels to suffer from cancer. We: the ones who have lived through it, not around it. We were not representing the Relay. So, from that day on, I refuse to wear my survivor shirt at the Relay.
      I have heard horror stories (in my opinion) of childhood cancer survivors having all their friends drop them, and have people poke them in their bruises or treat them horribly. I was lucky in that I was a college student and a lot of my friends were around when I was diagnosed and stuck by me through my treatment. Later, most of my friends and I stopped being friends, and now I have a small selective group of people who know how important my cancer is in my life. My best friend at the time, who lived with me during my treatment, skipped out on me on my remission day and went out with another friend. We stopped being friends for a long time, and eventually we “patched” things up, but when I come back to my hometown she never comes and sees me. My close friend came by a couple of times after my radiation treatment was over. Then I saw him about three times afterwards, and three emails before my wedding and I have not heard from him since.
     Mine is a weird situation where they stuck by me during my surgery and treatment, but dropped me shortly afterwards. I have no idea what goes through non survivors minds, but I am assuming that they did not want to drop me in treatment because it is callous and once I was “better” then they could not think about the fact that I ever had cancer. My life now consists of my absolute best friends, and a lot of acquaintances. However I find when I raise money for my charity or try and raise awareness for important issues, I can barely get anyone to pay attention and I have a select group of amazing supporters who help me every single thing I do but it is so hard to get people to truly care. I cannot get them to even acknowledge the fact that it is important. So, yes, in some way or another people will treat you differently. There is nothing you can do to control that, you have to find a way to make them understand that you are yourself. Yes, sometimes you will need help. They will need to be more understanding with you but they do not need to treat you differently.

           

Did you have headaches?      Back to Top

This is the most common question from non survivors. It is a reasonable question since I did have a brain tumor. The answer is “no I did not have any headaches.” In fact, the day I was diagnosed was like any other day. You can read my cancer story for yourself and see. I had a seizure after a long walk home on a hot day, and that was how I found out I was sick. After my surgery, I found out I had cancer. For the longest time, I just said I had a brain tumor, I did not say anything about cancer. I guess I did not think about it as cancer. It was my sister who always called it cancer, and after my meeting with my oncologist I had to start calling it what it was: Cancer. I was not embarrassed or anything, I just did not see it as a big deal, and I thought people who got cancer always thought it was a huge end of the world deal. I was wrong. Cancer is different to each person, and my positive attitude and lack of worry are what helped me through my experience. It can help anyone no matter what the doctors say. After I was finished with treatment, I found out that the doctors had told my family about all the possible outcomes of my surgery and my cancer. They were grim, and honestly they could still be grim. Even now, ten years out, I am still at risk of a reoccurrence. There will always be a chance that I will have to go under the cyberknife and start chemo and radiation all over again. There is a chance that cancer can ram its ugly head into my life one more time. For now though, I only look at the positive side. I feel great. I am working towards my goals and I have a good life. It has its ups and downs but it is still my life. I am alive and I am well!

           

What types of foods can you or can't you eat while being treated?      Back to Top

While some people may have dietary restrictions with their treatment plan, as you can see from pics of me I did not. I do wish however that I had been told to watch my food intake and to stay with healthy food as much as possible; would have made my 40 lbs weight gain a nonexistent problem. I did however use my chemo to get my steaks very well done, as I was worried that the blood in steaks would react badly with my medication. Not sure if this has any truth to it, odds are no, but I really hate raw meat! :-P Now I am very conscious of my health and I have a lot of physical side effects from my treatment. I wish I had been able to take better care of myself. I wouldn’t have the muscle loss, the weight struggle, and the other issues I face now and my path back to my old self.

           

What form of assistance or show of support (gift, flowers, time, monetary assistance) was the most beneficial for solely your mental wellbeing?      Back to Top

The absolute best form of support beneficially speaking was monetary assistance; I do not know what I would have done without the aid of my best friend and the checks from various family members when I was down. However, not many people can just up and give money. It was hard times even back then and it is much worse now, so the second best was small gifts and time. Just sending a small card to me made all the difference or coming by my house to see how I was doing. It also helped when my friend happened to supply a food gift card or a stuffed animal. :-P If you want to help someone in this kind of way think about the things you enjoyed the most before they were sick and give that to them now. Get them gas cards, food cards, snacks, a nice card. Or just spend time with them, if they are feeling up to company, hang out with them. Play games with them, listen to music, watch movies. If there are no restrictions pack a bag of emergency supplies and go out together somewhere to shop, walk around, or just be “normal” for a little while. Support is what matters the most showing that you actually care about the person.

DON’T LET THIS CHANGE AFTER TREATMENT IS OVER.

Stay a good part of their life. Nothing was more upsetting to me than when people would just ditch me or forget about me or treat me like I didn’t matter to them now that they no longer had to feel guilty.

           

Was it helpful for you when individuals mentioned alternative therapies or did it frustrate you?      Back to Top

In my case no one really mentioned alternative therapies while I was sick. People didn’t start mentioning them until I was feeling better. I think if people had mentioned them when I was sick I probably would have been frustrated, I had a lot on my plate. I just wanted to get it all done and the cancer gone, I didn’t want to think about changing my whole lifestyle or fighting against my doctor. However, I strongly believe that if you want alternative medicines you should go for them. I do not know enough now even to feel like they are for me. In the changing room there was a story about a woman who was diagnosed with terminal cancer and chiropractic “healed” it when she refused to go through radiation and chemotherapy. I could not do this but my opinion doesn’t matter, she did and it worked for her and that is wonderful. So, go for it if you want to. I currently have an amazing Chiropractor working to help me through my pain disorder and to help figure out what is wrong. He is amazing but I would not ask him to cure my caner and he would never even offer to do that. However, everyone is different- it is your body and ultimately your decision. Whatever you feel most comfortable with and however you want to be treated. Do NOT let anyone tell you, you are wrong, it is your body.

           

When faced with a chronic, debilitating, or even life threatening illness sometimes an individual can feel alone, yet they don't have the physical or mental energy to spend time with friends and family, or even to carry out a coherent conversation on the phone. How did you, in your personal struggle, deal with the loneliness?      Back to Top

I wish I had a good answer for this, I really do but my case is not the same as everyone else. I had been with my guy for 8 years when I got sick. We were always together and my closest friends were at my bed shortly after I was sick. While most of them did not stay after I was diagnosed in remission and it took a long time for us all to reconnect but during my treatment I had many people who were calling and visiting and until I got “better”. Emotionally I was very draught, I felt upset that I couldn’t do the things I used to do. I struggled to do everyday pieces but I wasn’t alone. My guy actually lost his job taking care of me, my sister relocated to my house to help. I had support physically so while emotionally I was a mess sometimes, it was easy for me to stay positive being surrounding by people who wanted to help me. The biggest advice I can offer is that find the amount of interaction that is comfortable for you and as the support circle, everyone must take their cue from the survivor. If they look like they are not doing well, excuse yourself. Do not make them come up with an excuse or ask you to leave. Be attentive and follow their lead. Do not expect too much and always be supportive.

           

Did you ever lose your sense of purpose, and if so, what helped motivate you to keep fighting?      Back to Top

Occasionally we are all going to have bad days, I cannot remember any really bad days during my treatment but I can remember lots after remission. My motivation was solely that I wanted to be happy; I didn’t want to spend my life being scared and sick. I wanted to be smiling and out and about. When I started to feel sad, I would just remember that. I went out with my friend and I tried to stay active as long as I could before I started to get weak. When I would lose my purpose I would remember why I was fighting in the first place. It was difficult, I am not going to try and pretend that I am some kind of super human stone wall and that my journey was not hard on me. It was, it was very hard on me. There were times when I wanted to give up. When I was in so much pain and when I was so very, very sick. In the end though, I always came back to the fact that I was still alive and that I wanted to be happy and whole again. Do your best as well, that is all you can do.

           

What was your most embarrassing moment during your treatments?      Back to Top

I don’t really get embarrassed, so I asked my guy what my most embarrassing moment was and he can’t remember any either. I wish I had some kind of helpful, great story here about running around with my ass hanging out or something like that but I actually posed for pics with my backside exposed. The worst part of my hospital stay had to be when the ICU nurse ignored me, argued with me, and then spill urine all over my bed and I had to sleep in it, but that wasn’t embarrassing just infuriating! I know that there are situations where it may feel embarrassing but there is nothing embarrassing about medical situations. It may be different than what you are used to but your health is more important than feeling embarrassed by talking with your doctor or getting the things that you need. Sex, bowel movements, hemorrhoids, medical side effects, mental concerns, nothing is off limits and it should all be addressed. If you are feeling something and you want it to be addressed, swallow your pride and your embarrassment and make yourself heard!

           

Now that you're in remission, what do you now do differently than what you did before you were diagnosed with cancer (ongoing treatments, diet, exercise, any ongoing fears for the future, etc.)?      Back to Top

I do a lot of things differently now, my oncologist likes to push me to be healthy to the point of “making fun of me” (not really that’s just how I look at it :-P) and so now I try and work out every day, I eat no trans fat (so I am the annoying person with the freezer open at the grocery store checking everything for hydrogenated oil, ANY hydrogenated oil = trans fat and they can legally say 0g trans fat and still have trans fat in them!!), I drink LOTS of water, when I go out to eat I try and drink a whole glass of water before the food gets there and then at least one more during the meal if not two. This results in a lot of hazing and jokes being made about me as I have to go to the bathroom like 6 times during the night but it fills me up and then I eat less. The past few years I have added a lot more vegetables and have taken to really enjoying juice made with kale (still no kale by itself but I am getting there). I have always loved fruit so I do my best to eat that quite often. I am not nearly where I want to be health wise now because of my treatment so I would definitely have added more exercise and better food choices. A whole pan of lasagna (minus one piece for my guy) is not a good dietary choice. It made me happy but it was really, really bad for me. My biggest fear for the future is that I will not be able to maintain the happiness I desire in my life. I worry I will not be able to make the rest of my goals and that I will not be able to make a big enough difference in the world. Those are just a few of the things I worry about but I never let them get me down or knock me off track.

           

HWere you given options on your treatment?       Back to Top

No, I was not. I had surgery the day after I was diagnosed and radiation/chemo were scheduled immediately. I know there are other treatments out there but my cancer was so advanced and from the research I have done and the comments from my oncologist most people die before three years even with treatment. I have read about herbal medicines and alternative treatments that have worked great, but I myself was not given any options. I can say with a lot of certainty that I probably would not have chosen any other way for it to happen. I hope that someone who has gone through an alternative treatment can share that here for everyone. Please see the Links Area for a link to more information on Natural or Alternative treatments.

           

How did you stay/think positive?      Back to Top

This is probably by far the hardest question I am asked because it will be different for each person and for each situation. One piece that you must never forget as a survivor is that you are never alone; there are people out there who care about you. The problem is they don’t know about you yet, so reach out and let them show you how much you matter. Cancer is an experience that is both incredibly personal and also very open. You are required to share your story, symptoms, and issues with many people along the way: friends, family, doctors, nurses, it seems never ending. The best way to handle this is to find your rock care giver. It can be your mother, your brother, your best friend, your significant other, or your favorite nurse or doctor. This person will be the one you turn to when you are feeling down, the person you can open up to. Everyone needs this person and it is my hope that you will all have one. My best piece of advice would be to always try to look on the bright side. Even if you are getting bad news, try and think about all the positive things in your life: your children, your family, your friends, your pets. Whatever makes you the happiest in the world is what you should focus on. Every day is a blessing and it is during our hardest times that this becomes the most apparent. Try and make plans to do things in your life. Don’t put things off! In the Care givers section I elaborate on how utterly important it is to live your life. Check out the retreats available to survivors. Get into a good book, play a fun game, do whatever makes you happy. If you get down it is ok, everyone has their down moments or there wouldn’t be the great ups! When you get down just work through it however you can, just get through it and on to the happy times! Talk with someone if you start to feel down, just opening up can make you feel so much better. So, no matter what your situation may be there is always something to be positive about. You are still here and your positive attitude is kicking cancer where it hurts! I have seen new pieces in the news about how staying positive is a hype and that survivors don’t want to hear the pander and lies about it and be patronized with it. This is fine as well. Staying positive saved my life. I would not be here if I was not positive but that does not mean that being pissed at your situation is a fruitless effort. I am pissed at many things in my life, I let myself express my anger and then work to change it. This is where the positive attitude can work together with any emotion you want to feel. As a survivor,

YOU CAN FEEL HOWEVER YOU WANT!!

NEVER let anyone tell you how to feel or that your way isn’t working! You have to believe you can kick cancer’s ass and whatever emotions you feel will help you beat it, go right ahead and feel! I know you can do it!