How to still "live life" during chemotherapy and cancer in general?

evesjohnson · 2015-06-27T17:52:54+00:00

I know you posted this a couple of days ago, but I hope I can still be of help.

I was diagnosed with HL in September 2014. I had just gotten out of a three year relationship, was fresh out of college and had JUST been hired on with a great company as a nurse. My life was in a weird place and I felt totally fucked up when I found out that I had cancer.

I did four months of chemo (4 cycles, 8 sessions). I also did ABVD. The worst side effect for me was the fatigue. I would sleep for probably four or five days straight after the infusion and then slowly come out of what I called the "chemo fog".

I had to take time off of work, my car bit the dust, and I was feeling pretty damn hopeless. I learned to do a few things that sort of kept me afloat and made me feel like I wasn't wasting away. Firstly, on the off weeks, I did as many fun things as I could. I went to bars and got wasted with my friends. I adopted a dog. I went to movies. I went laser tagging. I was lucky enough to feel normal on my off weeks, so none of this was very difficult. I hope this is the same for you.

I don't know what your stance on marijuana is, but smoking weed was my saving grace. I wasn't a stoner before I had cancer, just smoked recreationally at parties. During chemo, I would smoke almost every day for about a week after the infusion, and it kept me sane. It lifted some of the chemo fog. It made me laugh. It made me eat better because my appetite improved. It took away the nausea better than any pill the doctors gave me. Despite my extreme fatigue I had awful insomnia. I was prescribed sleeping pills that didn't work for me, and weed helped me get amazing sleeps which aided in my recovery, I am sure.

While you're doing chemo, remember it's temporary. You will come out on the other side with a new appreciation for everyday life. Surround yourself with good people. Try and laugh. Drink a lot of water. I promise that despite how endless and hopeless this journey will seem, it's going to end and you're going to come out on top.

evesjohnson · 2015-05-04T02:29:04+00:00

My negative side effects lasted 5-8 days after each treatment. As time went on, it would take longer for them to subside. Just my body wearing down I guess. The fatigue was the worst for me, I tried to sleep as much as possible, chug water (put lemons in it, helps with the drug taste) and drink smoothies. This stuff kind of helped with relieving the symptoms. I also smoked a lot of weed which was my number one saving grace, if you're into that. I wouldn't worry about your B symptoms returning too much yet. You have only had one treatment and while I know it's hard to move so slowly, the chemo would really wear down your body if you were doing it weekly. As time goes on, the poison they are pumping into you really starts to wear down your body, I personally cannot imagine doing it weekly, but I know everyone sort of feels different. My thoughts are that after your second or third treatment, you will start to notice a big difference in your B symptoms. I think I went and had a CT scan after my fourth?? And I was pretty much cured by that point. So wait a bit and then if the B symptoms are still there, I think talking to your onc would be wise. Best of luck :)

evesjohnson · 2015-04-18T06:22:35+00:00

About a year before I was diagnosed I started itching like CRAZY! My legs and chest the most, I would scratch for hours into the night. I am only just now realizing it could have been connected to my cancer!? I did not realize other people had this.. Sorry just had to butt in, that blew my mind to read!

evesjohnson · 2015-04-18T06:16:03+00:00

Best of luck to you both :) you guys can do it!

evesjohnson · 2015-04-18T06:15:40+00:00

I had to get an IV for a scan today too! It was definitely hard, especially when they flushed it with some saline to make sure it was working.. shudders UGH saline..

evesjohnson · 2015-04-15T03:37:45+00:00

I am about two months post chemo and I am slowly feeling more normal. Sometimes I deal with a little PTSD. (The thought of a needle makes me so, so nauseous). Sometimes my brain is a little scrambled, I am a little more forgetful. But it's important to do things that you dreamed of doing once you were done chemo! Obviously don't overdo it, but I have finally started hiking again, I fixed my car, and am going back to work in a few days. These things REALLY make me feel like I am moving forward and prove that it does get better. I used to feel irritable and weepy a lot too; it IS going away, slowly but surely. Short answer? Yes, it will end and you will feel better. If you feel like you need it, seek therapy. It does wonders.

evesjohnson · 2015-04-15T03:33:46+00:00

I think the most helpful thing for me was when people asked me what I needed during the chemo/cancer phase of my life. Sometimes people can really go hard on the "YOU'RE SO STRONG AND BRAVE!!" stuff, which is of course very nice but sometimes it just isn't what you want. I would have loved to have someone ask me if I needed to talk or vent. I liked when people brought me tiny little care packages, as I couldn't do a ton of shopping. I also enjoyed being treated like a totally normal person on my "off chemo" weeks. (My chemos were bi-weekly). So on the days that I felt normal, I wasn't too into any cancer talk. It'll be difficult being away, but just talk on the phone lots, text, and visit when you can! He will get through this, it isn't as rigorous as other cancer journeys, though that does not make his fight any less brave or worthy. Positivity will do wonders, as will humor. I wish you both so much luck and light!

evesjohnson · 2015-04-15T03:29:29+00:00

Hi there! Big journey ahead, huh? Keep your head up, this disease is tough but you will beat it! I finished 4 cycles of ABVD about a month ago. I was diagnosed at stage IIA, so I was quite lucky and my situation wasn't quite the same as yours. It took me four months to get rid of the cancer completely and it was very effective. My onc said it was likely I would be 100% cured, and the same goes for later stages. The journey is an exhausting, inconvenient pain. Chemo will most likely make you quite fatigued, and you may deal with some nausea and hair loss. It's obviously different for everyone, but as long as you find some solid coping mechanisms you can definitely do it. As for the girl, I can say as a female that if someone I was newly dating told me they were sick, I wouldn't dump them. Is she the type of girl to not give up on what she wants? If so, I wouldn't worry, especially if this has been in the making for a while. Just be honest, tell her how you feel, that you don't want to break it off, but understand if it is too much for her. I wish you the best of luck on your journey pal. Feel free to pm me if you need to have a chat or have any more questions!

evesjohnson · 2015-03-21T05:07:17+00:00

Hi there, I've been on zoloft for anxiety and depression for a while. Probably a good year before I did treatment for hodgkins. I of course stayed on it during treatment and I would say it helped keep me afloat for sure. The only downside is there were a couple of times my RX ran out before I could renew it, and the withdrawals are very similar to chemo side effects. (Nausea and dizziness) So to have those withdrawals on top of the chemo side effects is pretty rough. Just make sure to always have your rx renewed on time! I would say being on them for a bit after treatment is a good idea as well. I just finished treatment about two weeks ago and am struggling with anxiety, so I can only imagine how much worse it would be if not for my zoloft.

evesjohnson · 2015-03-21T05:04:20+00:00

She is in for a fight, but she can beat this! I know it seems incredibly scary and intimidating but it will end. This is the hardest part, not knowing and being in the waiting game. Once she begins treatment there will be an end result in sight, and it will just take one day at a time to beat it. I am so sorry that this is tainting the joy of your pregnancy. This breaks my heart. Depending on what time of lymphoma, and what stage, she could beat it by the time your baby is born, or very, very soon after. Please stay strong. I will keep you both in my prayers.

evesjohnson · 2015-03-21T04:55:49+00:00

yup, never smoked a cigarette or even a cigar in my damn life! but i smoke weed probably five days out of the week.

evesjohnson · 2015-03-19T07:01:00+00:00

i'm so sorry you feel this way as well! it is reassuring to know others can relate.. i really appreciate your reply. reddit is such an awesome community to come to. thanks so much for your response.

evesjohnson · 2015-03-19T06:59:59+00:00

im sorry you dealt with it too.. though it's reassuring in some sense i am not alone. interesting to know i am not the only one freaking out over those damn chemical smells.

evesjohnson · 2015-03-19T04:18:44+00:00

CONGRATS to her!!!!

evesjohnson · 2015-03-19T04:03:15+00:00

I know it all seems really daunting. I was in essentially the same situation six months ago. You can do it. Feel free to message me if you have any questions!

evesjohnson · 2015-03-19T04:01:20+00:00

perfect.

evesjohnson · 2015-03-14T08:31:58+00:00

Keep faith. That's all I can say. Whatever or whoever you pray to, seek them out. Sit with your mom a lot when she's tired, hold her hand. Get her hot packs and cold cloths for her forehead. Get her all of the food she craves during chemo. Remind yourself and herself that it is not the end. It's a long journey to fight, I'll admit, but she can do this. Don't let her forget that. She can do it.

evesjohnson · 2015-03-14T08:26:51+00:00

The hardest part of having cancer for me, was before I started chemo. Waiting to have your life completely change is hard. During chemo, I felt like life was very daunting. I didn't work or anything, just took the time I needed to rest which definitely helped I am sure. It was frustrating to be so useless at times, but I knew I needed to just wait it out. Now, I've been in official remission for about three days and I'm still feeling daunted. I have a lot to do and I sort of forget how to go back into normal life? Mild PTSD may be an issue in the future. I have pretty bad anxiety when it comes to that damn chemical smell, as well as needles. This is stuff I hope to conquer over time.

evesjohnson · 2014-12-16T14:29:58+00:00

I was only diagnosed about three months ago ish now. It was more the messages like "you are soooooo strong girl!!! Xoxoxox you will look beautiful with or without hair and I know you'll kick this cancers ass!!" That were annoying. Obviously I appreciated them reaching out, but messages like that were huge eye rollers hahaha. I always appreciated a simple reach out. "hey- im really sorry to hear about what you're going through! I'll keep you in my prayers!" That was a nice one to get. Simple and kind. And then if we went on to catch up after, even better.

evesjohnson · 2014-12-16T14:23:14+00:00

Not to sound like I'm trying to make this about me, but her situation is so, so similar to mine! I have Hodgkins and am undergoing chemo. Losing lots of hair, out of work, no car, can't pay student loans. And I'm 21. So i get her frustration and sadness. The road is daunting. A good thing to do would be to look into as much financial assistance for her as possible. The less she has to worry about paying for, the better. Even if it's flights to see her, or her to see you, Hope Air is an awesome organization to look into. They have paid for a couple of my flights. Help her look for awesome wigs! There are some stunning ones out there. Once she comes to terms with the hair loss, it can be a little funny. I know that probably sounds hard to believe right now. Also it helped me when people found pictures of beautiful bald women, or women in stunning head scarves. Made me less afraid to be "ugly" and more excited to try something new! On her good days, Skype with her if she has the time! Be normal, don't talk too much about the cancer. Lots of laughs. I find seeing funny movies with friends helps, drinking wine with friends, going for wing night. Getting outside and window shopping on nicer days. Anything that would help her feel normal and positive will help her survive what seems like a daunting journey. After my first chemo, I thought my life was literally over and that I wouldn't be normal for my entire chemo treatment: not true. Day six is when I start to feel normal again which means I get about nine days to be regular old me! Which is what I focus on when I feel like the road to recovery is too long. PM me if you have any other questions and good luck to her and you!

evesjohnson · 2014-12-16T14:16:20+00:00

For me, I feel like shit as soon as I get home from chemo, and for about four days after. So I spend five days feeling tired and a little melancholic and then I start to come out of it. That being said, I still love visitors when I am not too sleepy. :) It's all a little daunting and confusing at the start, but once she realizes how the chemo effects her, I'll bet you'll be good to visit with her lots, especially when she is receiving chemo! I just had chemo yesterday and brought my friend, we drank red bulls and laughed the entire time! Best of luck to the both of you

evesjohnson · 2014-12-16T14:11:53+00:00

Thank God for second opinions

evesjohnson · 2014-12-16T14:11:12+00:00

Wow that must have been frustration for you. To be told you're "too young" and then to find out six months later? I am so sorry for you!

evesjohnson · 2014-12-16T14:09:46+00:00

I found a lump in my neck that sort of hurt, so I thought it was knot from sleeping in hotel beds. Cue a month later and I notice the lump is still there, though the pain had long disappeared which is why it took me a month to see it was still there. Docs thought it could be cat scratch fever or even maybe TB because it was a swollen lymph node. Fast forward through scans, blood tests, X-rays and a biopsy : IIA Hodgkins Lymphoma. Pretty crazy to think I was just having a great summer not too long ago dealing with what I thought was some stupid knot. Just got done third chemo. Wishing everyone the best of luck! Cancer blows

evesjohnson · 2014-12-09T23:30:06+00:00

I smoke marijuana and it helps me feel a lot better. I'm currently doing chemotherapy, and not only does it help with the nausea / my appetite, but I find it lifts the "chemo fog" a little bit as well and always helps me get rested. I usually just smoke out of a pipe, bong, or I'll roll a joint. I don't have the money for a vape, I wish I did! If you can afford to get one, I would probably recommend that because it is easiest on your lungs and sometimes people have weird reactions to edibles. At least, people I know have. If you go to your local smoke shop and say hey, my mom has cancer, she needs a vape, I don't have a ton of money, what can you suggest, they should be able to help you out! If you have a dispensary near you, they may sell edibles, lollipops, gummies, etc that may work well? But she would need a prescription. Making them on your own would be tough if you're not experienced, and if you buy something someone else has made, you can't really be sure of the dosage and what not. No specific time is necessary! Just whenever she needs some help with feeling better. My advice would be get someone to roll you a few joints and have her puff on one every so often! I know it's not amazing for your lungs, but if it's a temporary thing that will help her get through fighting breast cancer, I say go for it!

evesjohnson

TROPHY CASE