Anyone have any advice/knowledge/whatever for me?
I got this in my email... I showed it to Ferrari, and she gave it back to me, but i need some more. I met this guy in 1988, fast friends. He's been there for me a lot, even going so far as to driving from Saint Louis to Owensville Missouri because i needed a ride out of the hell i was in (And that's a fucking long drive). This guy had my BACK. This is a private email from him to me, but i have no idea what do say/do about it. This is an anonymous board, so It's okay, he doesn't give anything identifying about him, so it's not like i'm "spreading shit" about him..
I just need help, and i'm not really clear on what the fuck "Lymphoma" is...
Here's the email.
I wont get into general surgery till the 9th (barring anyone cancels their appt) to get all of the biopsies done, I also have an endoscopy scheduled and an ultrasound of my abdominal area. They found abnormal growths in 6 different spots, and the rate at which they are occuring is in the highly aggressive arena. Burkitt's lymphoma is a really aggressive form of non-hodgkins lymphoma, it has a tendency to spread to everything very quickly. They aren't sure yet, could just be another lymphoma. But if it's burkitts, it's treatable --- just a very severe & intense chemo to treat it, the type where you don't get many days off between rounds.
My appointment yesterday was kind of surreal. It usually takes me about 10 minutes to get in and out with my script for pain killers, but I ended up there for 6 1/2 hours. Bloody diarrhea, so they think I might have an ulcer (hence the endoscope) but could just be it spreading somewhere down there like the intestines..etc, did a full panel of blood tests, kept running hemoglobin every 40 minutes (I'm thinking he wouldn't let me leave till he knew if I was bleeding severely even though I told him I wasn't... My fingers are sore from being jabbed so many times.). They yanked me off of steroids & nsaids cold turkey (as they tear up the stomach), so feeling the withdrawal from the steroids and not liking that, lot more pain now. He brought in a Sudanese doctor for a consult, and they found 6 different spots in the lymph system where there are growths, more than I knew about. I was shocked he was talking about Burkitt's, it's really rare, and I had only heard of it striking kids. We had one kid at Coram who had it, I think he was maybe 6 or 7, I don't remember if he lived or not though, kids generally have a higher survival rate. The scary thing is the speed of it, can go from healthy to terminal in a few weeks and no one is able to predict that, so it's really pissing me off that I couldn't get into general surgery sooner. Had some racist bitch I talked to when I got my referral that tried to set me for the 21st, said there wasn't a cancellation list... Yeah, right, bitch... I knew that bitch was jacking me around. Called back, got someone else, got it set for the 9th, and on the cancellation list. It's in my armpits, elbows, and a spot right near my spine, may be other places but haven't noticed yet. I wont say that they hurt terrible, but the ones in my armpits are really uncomfortable when I close my arms from it pressing, the ones in my elbows hurt a lot when I move my arms. It feels like I have a rock stuck in my elbows, like it's pressing you know? My knees feel the same way, but haven't noticed any nodes swelling there.
I haven't been able to find a good temperature, either hot & sweating, or cold & sweating most of the time. Just feel like something sucked the life out of me. I'm honestly a little scared at this point, I want to know what is up exactly and I can't get that answered yet. If it turns out Burkitt's the odds are I'll be inpatient for a lot of it as they don't give you a break from the treatments, just keep hammering you one right after the other till you immune system collapses, then fight to restart your immune system and deal with whatever infections you get for 4 months straight or so. They use extremely aggressive treatments for it. Who knows though, I may get the first couple rounds outpatient and only go in if I get a serious infection. I guess it depends on if they use CHOP or Magrath or something else. I've heard the treatments do a lot of damage to the body, but the survival rate is supposed to be pretty good, not as good for adults as for kids, but still pretty good.
I had a pretty good time up in PA and I'm in a lot better spirits from that, I needed a break from here, been a prisoner in the house too much. I lost about 5 days of my trip to pain in one way or another, 4 of them completely, 2 more where it was like half of the day, so I say 5. I got 12 days of feeling well enough to do a lot of things though -- the steroids helped a lot with that. Saw Team America World Police, put together a table, took the mine tour, and went to dinner with some of her friends which was nice & we bummed around the city a lot. We had wanted to go to Philly for a couple days, but I just didn't feel up to it. I'm not sure if I'm going to go to the relatives for thanksgiving or not, I'm sort of inclined to not make a 2 hour drive just to go to Ryan's...maybe if there was homemade turkey & stuffing & cranberries involved...ha But I guess I should go, I might not get to see them again. Just one day at a time, you know?
--Tim
90% of that is greek to me. I need some opinions, this guy is one of my oldest friends. What do i do?
Re: Anyone have any advice/knowledge/whatever for me?
Lymphoma is a very dangerous, very difficult to treat, form of cancer. From the sounds of it, he's been very very sick lately, and they suspect the aggressive spread of cancer, and he knows how dangerous it is.
Give him your support. That's about all you can do.
Re: Anyone have any advice/knowledge/whatever for me?
Quote:
Originally Posted by Miss Six
From the sounds of it, he's been very very sick lately, and they suspect the aggressive spread of cancer, and he knows how dangerous it is.
Yeah, he mentioned being on Oxycontin (I didn't ask). At first i thought it was a case of Carpal Tunnel, since he had the wrist thingies, whatever you call them.
I knew it was serious, i didn't know it was THIS serious.
Re: Anyone have any advice/knowledge/whatever for me?
Dude...my sympathies to your friend.
And as he sounds like a true friend to you (i.e. not a casual acquaintance) then what you do is simple. You support him...you visit him...you bring him a fucking apple pie...whatever. Let him feel that he has someone there for him. Read up on Lymphoma a bit so that you know what's going on. And prepare yourself for either the Hell of watching him go through treatments, or the same hell followed by death. Just be there emotionally for him.
Re: Anyone have any advice/knowledge/whatever for me?
I invited him to have a tiny TG dinner with me since i'm off and not doing anything. He bit, and asked about going to find a chineese place to get DUCK. This dude is eccentric.
I was all set on cooking, so i said "Duck is too greasy" and told him i'd call him back. So i went out and bought all kinds of TG stuff.
I dont know what to do, but i'm gonna hang with him on TG.
I'm a little worried.
You know, you don't really understand the things that you care about until shit like this... Why does it take shit like this to get us up off our asses?
Re: Anyone have any advice/knowledge/whatever for me?
I am studying Medicine right now, and I've covered a lot of basis on this disease.
It is very serious, lymphoma is a disease in which malignant (cancer) cells form in the lymph system. The lymph system is a part of the immune system.
I don't know which stage your friend is in of it, So I am going to just guess around here.
Since it's Non-Hodgkins, He'll most likely go through Chemo, and also radiation therapy. That is extremely tough to go through....His days will be up, and down. He'll sometimes have the best of days, and possibly the worst of days.
My best advice is to be there for him.....Love him, Support him, and let him know in some form that you're there for him.
It's a dangerous time, but thousands have beat this disease. Best of luck!
Re: Anyone have any advice/knowledge/whatever for me?
Also.......If you want to get more of an idea about this.
Here's a website of a man that had the exact the same thing your friend did but survived it.
http://www.houseofdiabolique.com/arc...cer121000.html
Re: Anyone have any advice/knowledge/whatever for me?
Thanks for that, i'll send it along.
Re: Anyone have any advice/knowledge/whatever for me?
Anytime!
I am sure he has amazing doctors working around the clock, and there are some outstanding results from people that have survived through it. Chemotherapy has always been the primary way of treating it.......It is mostly a childhood disease that 'normally' happens to children, but as the years have passed....It's been seen more so in adults.
Since he has Burkitt Non-Hodgkins; His white blood cells are beginning to basically go out of control and also mutate. In a normal body, such as yours.....These same cells help fight bacteria, infections, etc. But his cancer cells have developed into tumors that have damaged his lymph glands.
His disease mostly affects the bone marrow but it'll also at times (not often) affect the lymph nodes of his neck, and other areas.
He would be more at risk, if he was going untreated. But since he is being treated, I think he'll honestly do well! This disease responds very well to Chemotherapy, and other treatments. I don't know if he's on medication, but I am guessing if he is...He is on cyclo. It's a very effective drug that will succeed in putting the cancer in remission after a while.
Hopefully some of that made some sort of sense.
I've seen many survive through it, and have normal lives after it.
My thoughts are with him! :hug:
Re: Anyone have any advice/knowledge/whatever for me?
He wants DUCK...fuck your turkey. Give him duck, and the grease that comes with it. You could use some grease, anyway ;)
Re: Anyone have any advice/knowledge/whatever for me?
damn Mc, sorry to hear about your friend...Like everyone has said just be there emotionally for him, and prepare yourself for the hell you are gonna watch him go thru.
Wanna be truely essentric? Make a turducken for him(turkey stuffed with duck stuffed with chicken) that way ya both get what ya want
Re: Anyone have any advice/knowledge/whatever for me?
I second the turducken idea!
Best wishes to him for a full recovery...and yes, it sounds like all he wants is for you to be there for him, listen to him, sympathise, and then take him out and paint the town :).
Re: Anyone have any advice/knowledge/whatever for me?
I'm sorry to hear about your friend madcap. I agree with the others, be there for him right now.
Re: Anyone have any advice/knowledge/whatever for me?
And expect it to suck...but keep in mind that what he likely needs is just for one person to be willing to hang with him...have him over...play poker...guzzle a beer...whatever. He needs someone who will sit and chill out and not cry over him...at least not in his presence. Someone to make his road to recovery bearable...forgettable...for just a moment.
Re: Anyone have any advice/knowledge/whatever for me?
This is what my sister currently has- very hard cancer to treat, be his friend, be supportive and just BE THERE for whatever- and usually, its just to listen. I have learned that with my sister, as with anyone who is battling a disease, they just need someone to be there to listen to them while they talk out how they are feeling.
Re: Anyone have any advice/knowledge/whatever for me?
just wanted to add my sympathies for what your friend is going through. you seem like a very good friend, madcap. :hug:
Re: Anyone have any advice/knowledge/whatever for me?
I went ahead and searched for Duck, fount a fresh breast as the cost on the level of *insane* and that was IT (No full ones to be had the day before TG).
Bought it anyway.
Cooked it AND the Turkey, had fun, never mentioned the sickness, just whipped each others asses in Mortal Kombat and Dead or Alive 3, smoked pot, watched justice league and movies...
I'm not really sure what to do, but i guess i'll take it as it comes...
Re: Anyone have any advice/knowledge/whatever for me?
Re: Anyone have any advice/knowledge/whatever for me?
I say spend as much quality time with your friend as you can. Sorry to hear about his condition, but even our advanced Medical science can only do so much. Maybe find some of the medicinal stuff to ease the pain.