Jump to content

Hodgkin's Lymphoma


Recommended Posts

As was eventually discovered and stated and dealt with for the most part over in this post from a few months ago. (http://vinylcollective.com/forum/viewtopic.php?t=19451) I was recently diagnosed with Hodgkin's Lymphoma and am currently going through the treatment to get the fuck rid of it.

Along with it to avoid having to explain things to my family and friends a million times I started a blog to post my progress/feelings/thoughts as a lot of the information online is just straight forward unforgiving medical information or how to deal with the chemotherapy and there is not a whole lot chronicling the general experience. At any rate, here is the link:

http://aseasoninhell.tumblr.com

in case any of you are interested in reading it at all or might know anyone who is. I feel like this may be the most important thing that I can do for myself/other people right now considering this extraordinary & unexpected direction my life has recently taken.

Thanks. I really hope everyone here is doing very well, it's been a long time since I've participated actively and I apologise for my absence.

Link to comment
Share on other sites

i think those medicial blogs are an incredible idea, but don't underestimate the importance of human contact/conversation. of course you aren't going to want to "explain things to [your] family and friends a million times" but your closest friends and family members are going to be there for you. but remember, everybody here is, too.

all the best, man.

Link to comment
Share on other sites

Have you had any insurance issues?

other than them calling me asking for money? nah.

currently: my port got infected at some point, so when i went in for round 2 of chemo on monday i had to go to the hospital instead and have that bitch taken out. im still at the hospital but i feel great.

trying to get outta here ASAP so i can return to some form of functional normality again.

Link to comment
Share on other sites

My Buddy who post of this board went through the same thing and it was really bad for everyone but espcially really hard on him if you ever need some one to talk to who has been there Message Noeffinidea his name is Luke and his life got rocked from this disease but he is in full recovery now so there is light at the end of this shitty tunnel!

Link to comment
Share on other sites

This really sucks, dude.

If it's any consolation my step-brother had the exact same thing a few years ago. When they discovered it he was stage four and it had spread through his stomach, pelvis and lungs. He went through treatment and six months later he was fine. Now he's completely back to normal and aside from check ups every few months it's like it never even happened. I'm sure you can pull through it too, buddy!

Link to comment
Share on other sites

  • 2 months later...

just an uh, update.

after tomorrows treatment i will be halfway done - 6/12.

dude's not sure about radiation treatment yet and i was basically told when i asked, "aside from the fact that i feel a lot better and the masses are gone...how do you know i'm getter better?" and i was basically told that he doesn't know and won't know for sure until we do another pet scan after the final chemo treatment and after that it's just a matter of time passing (2 yrs and 5 yrs are the big time frames that people usually get sick again) and that i basically just have to put faith into something, which i am NO good at at all. but i'm keeping positive, he told me that he's pretty confident that i'll be fine, and i feel like i'm going to be fine. i can't wait to get back to normality. i miss being able to do things, i miss my wife, whom with i am currently separated from until (at least) the chemotherapy part of my treatment is done with, i'm pretty sure i'm not sitting around another 6 weeks to get radiation in florida, when i can do that in rhode island just fine.

anyway, i am doing some zines - at least 2 different ones, one will be totally cancer based and will (probably) contain most of what's on my blog + extra stuff that i'm not necessarily comfortable with my family/professors reading and the other will be just...other stuff. i don't fancy myself much of a writer at all - but i am accumulating hundreds of thousands of dollars worth of bills and i can't really just go into places with the economy the way it is and go, "hey i have cancer, i'll be unable to work 4 days every 2 weeks, and all my hair is falling out (which rules out food, which is probably where i'd have the most luck)" so i need to kinda try and keep myself afloat here. so when i finish them i'll post ordering info if any of you are interested. can't promise it'll be good, but i will try my absolute best to not disappoint.

Link to comment
Share on other sites

  • 1 month later...

so some good news that i forgot to post about 2 weeks ago.

"to the best of my understand of my disease, after 4 cycles (8 treatments) the cancer is basically gone and remaining 2 cycles (4 treatments) are preventative. so essentially as of my last treatment (August 28th) i should be free of cancer and these last 4 treatments are to wipe out any possible residual cancer cells. i will be done with treatment october 23rd, and i will know if i it is all gone at the end of november. kind of feels weird. anyway. just wanted to share that because i had just remembered that today."

I have treatment again this Friday, not really looking forward to it - seeing as the last one sort of wiped me out a little bit more than all of the other ones, but I had heard that 7 and 8 were the hardest and past those it was a breeze - so hopefully since this will be number 9 it'll be easy.

I don't feel like I have cancer anymore at all. I am generally in a pretty good mood and feeling pretty good overall except that for the last two weeks I have completely lost the ability to fall asleep at night (I am a natural insomniac and have been out of ambien for about two weeks) and so that has kind of sucked.

i can not explain how god damn happy i will be to be free of this when it is all over, how excited i am to get back to providence and be with my wife and return to normalcy and snow. the anticipation is starting to really set in and the butterflies in my stomach are coming out of their cocoons. never in my life did i ever think that things as simple as getting up and going to work every day, even if it's at some completely shitty job, would be the most appealing things in the world to me. the first day that i open my eyes and with some droning monotonous and infantile purpose i put my feet on the ground, rub my eyes, and begin a simple working class day rather than letting out a defeated sigh, flipping over my pillow, checking out what episode of spongebob is on tv and drifting back asleep to the myriad obnoxious nasally voices of the citizens of bikini bottom, to wake up anywhere from 2-7pm will be my greatest victory.

anyway, could not have kept myself together so well through out this without the positive support of everyone. so thanks to everyone who left a positive comment or had a positive thought, sent me some positive energy, prayed for me, or whatever, if i had not had the great positive support of my family, my friends, and message board acquaintances this battle would have been a lot more difficult than it has been.

i will be posting on my blog with regards to the zine sometime soon and i will make sure to bump this thread again when i do that in case anyone is still interested.

i will also be selling a ton of stuff coming up this week.

thanks again guys. i know i don't post as much as i used to, i've been trying to work on that - hopefully you guys understand that i had to force myself to kind of keep away from this board because there are so many posts about new records coming out and i don't have any income at all and i'd be tempted far too often to overdraft. it is killing me to not buy records, it's killing me that i've only bought about 10 records in the last 6 months!

anyway, i'm going on and i need a nap, just thought i'd update you guys.

Link to comment
Share on other sites

Bizarrely enough i had a lymph node in my neck checked today. I thought it was kinda swollen, turns out it's normal sometimes to be able to feel them and i don't have anything to worry about. But i'd never have thought it was something i should get checked had i not read your blog.

Congrats on getting through it all!

Link to comment
Share on other sites

awesome! thans for the update!

Thanks for always being a really positive dude!

thats great news... I just found out on friday that the owner of our company has this too. He has gone through a couple rounds of Chemo already and is confident he can beat it.

I keep wanting to start my response with "Awesome!" but it's not really awesome and that would seem rude. However, it is so treatable and the best thing to do is be optimistic, feel free to share my blog with him if you don't think he would be offended by it - otherwise maybe just wish him the best of luck for me and recommend on my behalf that he start drinking Kombucha and any of those superfood/smoothies with spirulina in them (or spirulina caplets) especially on days when he has chemo - spirulina helps to combat the toxic side effects that the adriamycin (aka the red stuff, if you want to convey that point and have trouble with that word like i do) has on the heart without jeopardizing the effects it has on the cancer. and finally tell him to get some of these (http://www.newchapter.com/product-categories/lifeshield-mushrooms) and to take 2 a day, they will lessen the number of neupogen shots he will have to get and that will make him a really happy camper as they cause the most pain out of anything.

Bizarrely enough i had a lymph node in my neck checked today. I thought it was kinda swollen, turns out it's normal sometimes to be able to feel them and i don't have anything to worry about. But i'd never have thought it was something i should get checked had i not read your blog.

Congrats on getting through it all!

ah yeah they are definitely super important and generally a good indicator of something being awry. sometimes they feel a little bigger than they usually are and it's nothing, but it is definitely something to get checked even if it doesn't seem like much - as it was stated somewhere, not sure if i mention it in my blog at all really can't remember, but i was misdiagnosed twice and spent about 6 months figuring out what was wrong all the while having this mass on my neck just continue to grow, and it all just started with something that felt a little bit too big.

thanks!

Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

 Share

×

AdBlock Detected

spacer.png

We noticed that you're using an adBlocker

Yes, I'll whitelist