MrbLOB9000

Already posted this and e-mailed this to some people but figured it’s a good place to start so here it is again for some, first time for others.

Well, as the subject says, I have Hodgkin’s Lymphoma, a type of cancer. Wikipedia says their’s like a 90% chance of survival if it’s found early, so it’s definitely not the worst option it could have been. I’ve had a cough for a year, to varying degrees and I haven’t really felt up to par for basically that long as well. I had one lump on my neck about 6 or 8 months ago but we figured it was just something with me being sick and trying to get rid of the cough and whatnot. Well, about a month, maybe two months ago at this point, I got a bunch of lumps on the base of my neck and soon after on my right side a glad got swollen at the top of my neck behind my jaw. I went to general doctor and she had no idea what the deal was, sent me to an Ear, Nose & Throat doctor, he said some possibility and said we had to do a biopsy on a lymph node to find out what it was. He said a needle biopsy that they could do in the office wouldn’t show enough information and we’d end up doing a regular biopsy anyway.So we did the biopsy surgery and found out like 4 or 5 days later that I had Hodgkin’s Lymphoma. That was like the 28th or 29th of last month.

Well, another piece of awesome info is that I don’t have health insurance. For the biopsy, luckily they accepted me for charity care and I didn’t have to pay for any part of the hospital’s charge, only had to pay the doctor’s charge (about a grand) and pathology testing (like $150). I don’t know what the anesthesiologist fee would be but they said the facility charge was $9k. So that was a relief.

Next up, since we found out I had Hodgkin’s lymphoma, we had to get appointments with oncologists and try and figure out how the best way to get this shit paid for. Needless to say, cancer treatment isn’t cheap. The hospital I got the biopsy surgery at said that I was “very likely” to get charity care for the treatment as well, but like the biopsy surgery, we find out after it’s done whether they’ll pay for it or not. I almost definitely wouldn’t have to pay, but their was that chance. Also, the doctor connected with them, his practice isn’t actually inside/part of the hospital, so I’d have to be inpatient at the hospital because the doctor’s office couldn’t take the hit for the charges where as the hospital would. So if they didn’t give me charity care for is more expensive and sucks more than outpatient and basically 100% of people with Hodgkin’s are outpatient. But at that hospital like I said I was “very likely” to get charity care, and not have to pay anything. Their was another doctor, Dr. Dragon that we were able to get an appointment with whose practice is actually inside the hospital he’s at, so I can be inpatient there. Next we had to jump through a bunch of hoops and fill out papers and call people and then call other people because the first people wouldn’t call back, good times. Anyway, we’re finally done with all that and found out Thursday that the hospital Dr. Dragon is at will give me a discount of 100% on services through that hospital for a year! So it was a great relief to know that I’m not on the hook for any payment and that we know in advance that’s the case AND that I’m going to get outpatient treatment.

I’m going in on Tuesday for a bone marrow test and they have to do some scans to see where all is affected by the Hodgkin’s and test liver and kidney function and stuff. Soon after that I’ll start chemo, so like later in this upcoming week or the week after probably.

Their’s two treatment options for chemo for Hodgkin’s Lymphoma, after the scans and stuff they’ll decide if they go with the normal treatment or the more aggressive treatment. He said he’d probably be going with the more aggressive treatment because I have “pretty bulky disease” or something like that, but ya, my lumps are pretty big and quite a bit of them and that’s not counting the angry glands (the left side is getting bigger than normal, trying to catch up with the huge right side). The normal treatment has a chance of infertility, the more aggressive treatment has like 20-25% (or was it 20-30%) chance of infertility, both basically have no chance of other sexual problems though, so that’s good. Anyway, I’ve been going to a sperm bank just in case I do want kids in the future and I do end up sterile. So basically that’s where I’m at right now, one more sperm bank visit and the scans and bone marrow test and then I’m on to chemo.

Oh, and the two oncologists we saw, one was a guy that treated a friend of my folks that was going to have his yearly checkup there a few days after we found out and he put in a good word for me with the doctor. When we called the day after the guy’s appointment (or later that day or something) the lady that answered the phone goes, “Oh, ya, the doctor just said you were going to call and said to fit you in” and we got an appointment within like 5 days of the call, maybe less. The other doctor I saw we were trying to get an appointment and calling every day a few times trying to schedule something and then they finally called me back and were like, “Can you go at 3pm today?” So that was a big yes and we went and then went to see Dr. Dragon the next day (that’s who the guy my folks friend went too). We called a few other oncologists and the earliest appointment was 19th at one place and 23rd at another, so I wouldn’t eve have had an appointment yet if the one doctor hadn’t had a cancellation and if my folks friend hadn’t put in the good word and Dr. Dragon hadn’t sad to fit us in. So that was real cool. Also, wtf is with oncologists like, “Ya, ok, so you have cancer? Alright, lets see, we can see you in almost a month.” Seriously?! We aren’t talking about laser hair removal or something.

Overall I’m basically feeling not terrible but definitely not great. The first couple weeks after the biopsy I was doing real shitty but after that starting doing at least a little better and it sucked less. Haven’t really been working, now that I’m not on the phone and waiting for calls all the time I’ll probably try and work some but we’ll see. As for emotionally, I’ve been doing alright with it. I don’t know, I’m not one for “why me?” and stuff. I’m a little freaked out/anxious but not all that much, I mean, it’s out of my control, which means their’s nothing I can do directly to change things and no amount of worrying will change anything.

This entry was posted on Monday, January 19th, 2009 at 1:39 pm and is filed under Hodgkin's lymphoma. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.