Got any plans for Monday?

OK, so I’ve been negligent in keeping up with this journal over the past week. Quite a bit has been going on, so I might as well get started..

Tuesday I went into NYC to Memorial Sloan Kettering
Cancer Center for my second opinion. All in all, it was an experience! This place is the supermarket of cancer treatment! I liken the experience to an assembly line. First you pre register on the phone. Then,
you register in person. This was no normal registration, though. They had me sign stuff on electronic tablets, took a photocopy of my insurance (now, in it’s last week of existence) card right in the keyboard, and you get a full
color, spiral bound book on how you’re going to pay. Then I went up to see the doctor I had the appointment with (names have been omitted to protect the innocent, if you’d like to know, send me an email). First I sat down with
one of the reception people (one of three!), who took my card (you’re given two credit cards for ID at Sloan), and gave me some (more) paperwork to fill out. Besides an extensive history, there’s a form to fill out that was more
difficult than the SAT! It’s was a fill-in-the-circle sheet of every person in your semi-extended family and their diseases, ages (or age at death), and history of cancer. Geez! Then I started the 20 minute game. It
consisted of how many people could tell me they’d be ready in 20 minutes before I started yelling. The answer was 4. So, I saw a doctor sometime around 4:15 or so (for a 3 o’clock appointment). Of course, it wasn’t even
the correct doctor, first it was the fellow. Did the history, asked questions, poked and prodded, etc. Then it was the other doctor’s (the one I came there to see) turn. More poking and more prodding. I guess I
should explain the prodding… You see, the enlarged lymph nodes in my chest (which are the big ones – one is 8 cm x 4 cm) you can’t feel because they’re protected by armor (ribs). The others can be felt with careful
digging. For example, the ones on my neck and collarbone are easy to feel because they’re mostly near the skin surface (some digging required near the collarbone on my right side). However, the real fun ones to find are under
the arms/armpit area. This requires some diligent digging and poking to find and is REALLY comfortable. They also tend to check the spleen (which I now know where it is – on the left side of stomach), and the nodes in the groin
area (now accepting applications from female readers to keep constant tabs on lymph nodes in this area… please enclose photo Anyway… to make a really long paragraph longer (I’m an engineer, not a writer, never liked
grammar anyway), both the doc and the fellow said I have cancer! No shit, sherlock! Yadda yadda yadda, Stage IIb, yadda yadda yadda, concerned about spot on the liver, yadda yadda yadda, we have the best facility, yadda yadda
yadda, we’d love to try some of our protocols on you, yadda yadda yadda, can you write us a check today? The doc turned out to have the personality of my front door. He is an expert in Hodgkin’s, which showed in his yawning
during the evaluation. Also, the protocols he neglected to mention were clinical trials (until I asked him directly). My thought on clinical trials is, why would I want to risk be in a group that is denied some form of
treatment, just to see if you react the same way the people who go it did? Anyway, I’ve talked enough about this. I’m sticking with my original oncologist. Now, three people have told me I have cancer, so I guess there’s
no escaping that truth. (yes, I know this should have been more than one paragraph, but I don’t care)

OK, so that brings me to Wednesday. I called my OncoDoc (the original) to tell him the news. He didn’t get back to
me. I went shopping Wednesday night (one-day sale at Macys) and discovered something unnerving. I got tired walking the length of the mall. This was a sad realization, as being at the mall is one of the only recreations in
New Jersey But this does show that the cancer is causing me problems and I need to get started with treatment.

Thursday, I had a lot of stress from work (deadlines are not conducive to cancer). I finally got to talk to my
OncoDoc. He asked me what the other guy said, and I told him, “He said I have cancer.” He laughed, but then said he was sorry for laughing, but I explained it was OK, because I meant it as a joke. We discussed what the
other doc had said (his treatment protocol was the same my original OncoDoc was going to begin), and then he asked, “So, when do you want to start treatment?” Things get blurry around here… Monday was an option, so I called my
Dad to discuss it (he had already canceled a trip this week because we knew this was coming). I totally lost it at this point. Luckily, my office mate was not there, and I could close my door. I think I cried for about 15
minutes before I could calm down. As much as I like to joke around to make myself feel better, sometimes the realization hits me, I HAVE CANCER. What day do I want to start? That’s a loaded question! More like, “What
day do you want to CHANGE YOUR LIFE FOREVER?” Most other life-altering events are unexpected, such as the onset of disease (like this), a death in the family (seldom do you know the exact time this will happen, and often it’s
completely unexpected… I know I can relate to that, and so can my best friend Adam). But, how often does one have to make a choice like this? Do I say, “No, Ally McBeal is on Monday, why don’t you inject me with poison
on Tuesday, because I don’t mind missing NYPD Blue?” Holy shit did this hit me hard! No more procrastinating (not that I was doing that, it just takes a while to get all the tests, second opinions, etc.), this is it. It’s
going to happen now. Monday, March 1, 1999 I start chemotherapy. FUUUUUUUUUUUUUUUUUUUUCK! !@#$#$@#^%@#%$^@$#%@#%&^%$$*%*(%$@$%#!@$%!#^%&%$#&#$^%@#$%@$#&^%$&
^%$&@$^%$#@^@%#$^%&^%$*^&%*%^(#^%^@#$^&%$&*^%$*$#^&%@#%$^@#%$#@^%# @ (DEEP BREATH)

OK, I’m back now… Diagnosed February 1, 1999, start chemo March 1. Deep breath…

Good, Monday I start getting
better. The secondary symptoms should go away quickly. A few months from now I’ll no longer have cancer… Thank god! I’m ready to get better. Yesterday, I felt like hell. I had a fever of 100.5 in the
evening, then woke up with chill in the middle of the night with a temp of 97.5 I can’t wait till that stops. I’m getting sick of having to change clothes in the middle of the night b/c of the night sweats.

All right, I’m getting tired of writing, so I’ll try to wrap this up. I’ll start a protocol called ABVD
on Monday. I’ll probably have 6 cycles. Each cycle is two weeks apart, so I get the drugs on day 1 and day 15. The whole thing should last about 6 months. The drugs are Adriamycin, Bleomycin, V
inblastine, Dacarbazine (DTIC). You can read more about them by going to the Hodgkin’s Info page (especially Li Spark’s Page).

All right, definitely had enough of writing today… Wish me luck! I’ll keep this as up-to-date as possible.

Caution: Leading a normal, fun-filled, productive life can cause cancer!

Well, I’ve done a lot of work on this site today. I finally feel somewhat comfortable with the “home” page. I finally found a graphic I can live
with (just couldn’t seem to find the flaming, spinning, Cancer logo anywhere… and they say the web is powerful!). Also, I think I’ve fixed my counter, b/c I noticed no hits from Feb 4 on forward (which is when I did the major
redesign). Guess I screwed up the tag. I know for a fact that people have been here since then. I’ve added two pictures to the About Me section, b/c my sister said I had to. I’ll add more if I decide to get a scanner
or digital camera (waiting to see how much the gov’t takes out of my bonus check). I also added a description of Hodgkin’s to the info page (which I stole from a book, but gave credit to).

Today is the first day in a while that I
feel good. I don’t exactly know why, but I have no real bad aches, fever, or itching (famous last words). I think I might be over a little cold, which I think may help. Plus, I met Lord Valium last night and got a decent
night’s sleep (even though I still had to set an alarm). No night sweats, and I think I slept nearly undisturbed the whole night. May be coincidence, may be the wonder of drugs?

Finally finished my collection appointments at
BioGenetics this morning. Thank god that’s over! I’ve got to comment on one thing for sure (only one thing, David?). It’s one thing to be in that room and do what you’ve got to do. It’s another when people are
talking outside the door in the reception area, like there’s a f*cking water cooler to hang out at. Plus, yesterday, they were doing construction in the next room. So, I had to endure drilling and hammering during my
“collection”. It makes it very difficult to hear the dialogue in the movie and determine the plot… (That was sarcasm, if anyone was wondering) Plus, I really didn’t need to have the receptionist say, “Oh, I know who YOU
are.” when I gave my name at the front desk! Was this necessary? Does she think I like driving an hour to fill a cup? Come on lady, I’m “Preparing for Tomorrow, Today”

What’s in store for the week ahead… Not
much, just a second opinion, and, oh yeah, I probably start chemo (probably). No big deal, just the norm. (Note: more use of sarcasm) I’m trying not to build this thing up to be too bad. I’ve heard anything from
“back to work the next day”, to “don’t get out of bed for 6 days” as the reaction to the chemo drugs. I know I’m going to be strong and fight this and everything, but why do I feel like the day I start chemo, is the day my life is
over for the next 6 months? I really don’t like anything that alters your body. The side effects of these chemo drugs are something else! Sterility, heart damage, lung damage (more susceptible to leukemia), bone pain
(caused by the drug to combat the effects of the other drugs), loss of feeling in hands & feet, etc. We won’t even go into hair loss. Can’t wait till the day when I get out of bed, but my hair decides to keep sleeping on the
pillow. Uggghhh!

So, I just want to get this started and over with, so that I can get on with my life. Unfortunately, I’ve been saying that too much in my life. This past year alone has been unreal. First, dealing
with my mother’s death, then the lawsuit regarding the estate, then my best friend’s father’s death, my sister had a pre-cancerous growth, now I’ve got Hodgkin’s. When does the fun begin again? Yes, I’ve had some really great
times this past year. My two best friends got married, and I had a good time traveling all over. I just want to get this cancer out of me and be able to plan something fun. I think that when this is all over (about 6
months from now), I’m going to cash in all my Marriott (370, 000) and Northwest (145,000) miles and do one hell of a vacation! That’s the goal! Fall of 99, David’s going on a little trip! Something to look forward to!

Alright, enough said. So much for another quick venting session. Have a good night…

Win this one for the Zipper!

Alright, I didn’t realize I haven’t written in a while. No need for me to explain, my new excuse will suffice… c-a-n-c-e-r. But anyway, I had a pretty good weekend. I had friends
come up and visit me and I really enjoyed that. Saw Rushmore which I suggest everyone should go see. And, oh yeah, had a migraine and anxiety attack most of the weekend.

Monday I went back to BioGenetics to make another
deposit. My friend looked up the definition of bailor for me: one who delivers goods or money to another in trust. So, now it makes sense… I like my definition better. Upon my second visit, I was given an
evaluation of my “collection”. Apparently 15 million is low… but hey, what’s a few million between friends? But not to worry, my boys made a great comeback (no pun intended) after Monday, way up to 40 million! Had
another visit Wednesday and will finish up (no puns) Friday & Saturday (I’m forgoing the 48 hour waiting period b/c I’ve had enough fun traveling an hour so I can do my business in a cup).

On Tuesday I got back my results of all my
scans. Looks like the Hodgkin’s is localized above the diaphragm (and, incidentally, on the left side). That puts me at Stage IIA/B. I’m somewhere in the middle of an A/B b/c of my secondary symptoms not being too severe
(i.e., haven’t lost 10% body weigh… not that I couldn’t use it . Next step is a second opinion with a high-falluting NY doctor who will charge me a lot of money but say the same thing…

Then, I’ve also been changing my insurance this week b/c my company went under… (I’ve been really busy)

I’ve had every STD test known to man b/c my “boys” need to be clean before they get frozen (incidentally, you guess which
three fluids are required for these tests). I decided to pay the “collection” lab to do some of the tests in order to avoid a procedure described as a “urethral swab”. Don’t know for certain how much fun that is, but I’d do
anything to NOT find out.

Then I’ve been getting all the slides, results, etc. together for a file for myself and my second opinion.

And, I talked to my OncoDoc about “Something for my anxiety”. He responded, “What are you anxious
about?” So, I immediately knew I liked him. So, yes, I know have the hopefully wonder-drug of the world… Valium in my medicine cabinet. I’ll let you know how it works when I use it. I know I’m justified in asking
for it. I had to go to the doc anyway to get my results… I had to wait and talked to some other patients… Got my stuff and left… Made it about 1.5 miles before I realized I forgot to get the
prescription… Turned around and went back…. They were almost waving the prescription as I walked back in and said, “Forget something?”

Alright, obviously I’m wound up and babbling… Gotta go reply to some people… Talk to you soon…

Do you like movies about gladiators?

Well, I certainly thought I was going to have no problems today, but that just wasn’t the case. Faced with the prospect of sterility, I made my initial visit to a sperm bank today. Curiosly, I was just as nervous for this appointment as I was for many others, although I was nearly certain there would be no pain involved. Only one word can describe the whole incident… shady! The building and office were certainly shady. Although, I don’t think they teach you how to decorate a sperm bank in interior design school. Initially, they explained to me the process, the legality, and the science concerning what I was there for. I signed a lot of documents… Often times, the documents referred to me as a “Bailor”. I don’t know what a bailor is, but I’m educated, and using sentence context, I think it means, “The guy waxing the candle into the cup.” Shady I tell you. Apparently, it’s quite expensive to keep “my boys” chillin for a few years. Luckily, I could charge it to AMEX and earn points! Of course, as I’m getting on the plane using my points, I’m not gonna say, “Hey stewardess, you wanna know how I earned this free seat?” Because I don’t want to cross any lines, I’m not gonna describe the rest of the appointment. Needless to say it involved a “comfortable” room, a locked door, low lighting, soft music, various entertainment, some alcohol swabs and a cup. Feel free to email me if you MUST know the title of the video, but let’s just say that it was #13 in the series and I’m pretty sure it didn’t win any awards. Luckily I get to do this between three and five times depending on how many of “my boys” make it through each collection. Overall, it was a traumatic experience that was demeaning, and really sucked. I shaked nearly the whole time.

I’m still waiting to hear from the oncologist about my test results from the gallium and MUGA. So, I still don’t know the staging or when I’m going to begin treatment…

As the lymph node turns…!

Alright, I’m writing this one at work (don’t worry, it’s my lunch break), because I’ve just got too many things in my head. This is really becoming therapy for me now… It’s really got the creative juices flowing (we’ll talk more about other juices later)…

Anyone notice I’m a big fan of the ellipses…?

I heard from an old friend told and it really got the emotions rolling. I’ve been doing a lot of reading lately, and there’s a lot of people out there in similar situations as me (in regards to the Hodgkins, that is). It really is the hardest part to tell friends and family. Nothing like, "Well, what’s new, hmmmmm, let me think… job ok, got cancer, weather good, got cancer, my car lease is up soon, got cancer, did you see that new movie, and, oh yeah, I got cancer." Its weird to see how some people react to this, because I’ve never been one to like people fawning over me (is fawning a word that make sense?). A lot of others with HD seem to agree, I wind up counseling others and making them feel better. How ironic is that? My dad says I cheer him up more than
he does me. Maybe because others feel so bad because they have a choice. I no longer have a choice. I’ve got to fight this thing. The only way I know how to do that is to laugh about it.

Now, I’ve gotta talk about this whole "raw deal in life" thing. God, I really do appreciate it when people realize what me and my family have been through (for those of you who don’t know me personally, this extends waaaaay beyond my Hodgkins). My family has been through more sh*t than some soap operas. I guess most people watch "Melrose Place" or "Party of Five" and have the reaction that it’s far fetched and no one has to go through things like that. Well, the unfortunate truth is that even the far-fetched story lines don’t compare to some of things other people go through. And, when you connect with and admire your favorite drama characters, you’re missing something. Probably many of the real people you know, admire, connect with and think are special have been through that or worse. And you don’t even know about it. It’s something they have to deal with… It’s a role
they don’t play on TV and don’t get paid for.

Later on at night…

I had planned on writing more tonight, but I just don’t feel that great after dinner. These secondary symptoms do kinda suck. I’ve got a fever tonight and chills. Considering everything on my mind, I can’t sleep much. If i’m not worried, I wake up with night sweats (the drenching, change your clothes twice a night kind). Plus there’s the itching… don’t get me started on that one. Never again will I complain of a mosquito bite.

Well, I promised more talk of fluids, but don’t really feel like it. I’ll give a full report tomorrow, after my visit to BioGenetics (a Sperm Bank – a personal approach… Forewarned is Forearmed… Think of Tomorrow… Today)

One last thing… If you’re wondering… Yes, it’s ok to read this… I wouldn’t put this on the Web if I didn’t realize that anyone can read it. I may be forward and say things with a lot of candor, but I DO know what is mine and I won’t share anything I’m not comfortable with (which doesn’t seem like much given the topics so far).

What a week I’m having

Another day, another dollar…Ok, no reason for that, just sounded like a good way to begin. If you’re reading this cold (i.e., never met me in person) I should warn you… I’m insane! My philosophy is (and pretty much always has been) “You’ve gotta laugh, otherwise you’d be crying your eyes out!”

I’ve got a feeling that this entry is gonna be pretty random, as I’ve got a lot of random stuff on my mind. First of all, my bone marrow scan came back negative today, which is good (although, I honestly wasn’t that worried). So the pain was worth it.

Oh, more good news, MY INSURANCE WENT UNDER TODAY! WooHoo! Un-f*ck-ing-believable. What? It’s not bad enough that I got cancer? Now I’ve got to go find a new HMO? Why don’t you just give me a papercut and poor lemon juice on it? (Name the movie – Lauren, I know you know it).

>Well, I got some great literature from my oncodoc today. Since I’ll be going sterile (you know, the gun’s loaded, but I’m shooting blanks) he sent me some info on sperm banking for the future. What’s the interest rate at a sperm bank these days? Finally, a medical procedure I can ENJOY! Yes, doctor, Here’s Monday, Tuesday, Wednesday, Wednesday again (I couldn’t keep my hands off myself They say you can do this by mail. Man, what’s the postman gotta be thinking when he sees that package? Put that baby on the scale and figure out the postage…

Boy, I’m really looking forward to all this stuff ahead of me. Besides the shooting blanks thing, I’m almost for sure gonna lose my hair. I know, you’re all jealous again. I’m thinking this is a great opportunity for that tattoo I’ve always wanted. Maybe something like broken glass so it look’s like there’s a whole in my head… I think I’m gonna miss my facial hair though. Anyone who I only see on a sporadic basis plays the “What kind of facial hair does David have today?” game. Goattee (sp?), beard, clean. Well, now probably clean and maybe no eyebrows either… Now I can reprise my role in Pink Floyd’s “The Wall” (another obscure reference, anyone who gets that one gets 10 bonus points).

Alright, I’ve had enough… I’m sure there’s a lot more crap floating in my head… I’ve had enough “therapy” for one night.

I’ll be fixing up things over the next few days. I’ll add some kind of guest book and whatever else cool I can find.

Today’s parting words… 10% of a lot of money is a lot of money.

Dx + 8

Well, today was a good day! At first, I was wondering why I could say that, but then I had a revelation! It’s because no one poked, prodded, injected, made me lie still, told me to wait until this takes effect, here take this, etc… It’s not until you have a lot of doctors poking at you that you realize that you don’t like being poked! Today was good b/c I didn’t have to deal with tests, doctors or being sick. I was sorta normal for a day, again. I’m ready to start fighting so that I can have more days like that.

I guess it was good, because this weekend wasn’t the most relaxin. Sure, I got to go out with my friends and managed to catch up with some old ones. But all that was interspersed among many tests and their “preparations”. Saturday morning I had a MUGA to check on my heart. Not too bad, but involved 2 injections and a lot of lying still. I got my injection for my Gallium scan on Saturday, too. Sunday I had my “preparation” for my Gallium. Not going to descibe that in detail, but let’s say it involved a “Fleet” product and a lot of bathroom reading from 9:30 at night until 1 am. The actual scan took place Monday morning. No more injections, just pictures by yet another very large machine rotating around your body, inches from your face. My standard answer to the questions “Are you claustrophobic?” is now, “Only when I’m in confined spaces or machines.” This wouldn’t have been too bad if the machine hadn’t hit the bench I was lying on during the first two tries…

Well, I really should have put in some more entries in the journal this weekend, but just lacked the motivation. What really freaked me out was the ER episode on Thursday night. As was discussed on the Hodgkins mailing list, as soon as they discovered lumps in the intern’s neck, we knew he was going to have Hodgkins! It was so IRONIC, since you can say that the “official” diagnosis was that same day for me. Very freaky! I believe that everything in life happens for a reason… Hopefully, they’ll continue with the story line. I think it’ll help others understand what this disease is all about. Unfortunately, in the real world, unlike TV, we don’t go from first symptoms to diagnosis in 15 minutes!

Again, enough of this writing… I’m too anxious right now, anyway. I want to finish my staging, figure out the course of treatment and start fighting! The quicker that happens, the quicker I can win.

Diagnosis + 3 days

Well, today was a fun day! I was diagnosed with Hodgkin’s disease on Monday. Today was my first visit with an oncologist. Today was a real hit to the system. It’s one thing to read about cancer from other people’s perspectives, but quite another to have a doctor tell you about it. It finally hit me today… I HAVE CANCER. This is going to fuck up my life. At least I know that at some point in the future, I can say, “Cancer: been there, done that!” Since I really don’t feel THAT bad right now, it’s scary thinking about what lays ahead of me. The mere fact that I’m doing this is a complete change for me. I’ve always resented writing, but I need to start putting these things into words.

I got to see the results of my lymph node biopsy today. It seems to be nodular schlerosis Hodgkins disease (do I have to add an apostrophe Hodgkins?). I can’t remember if that’s good or bad (can any of it be good?)

I also got to do one of the great tests that I’ve read so much about. If a doc ever asks to do a bone marrow test, I suggest you pass if possible. Luckily I didn’t know it was coming so I didn’t have too much time to worry about it. It was one of the worst things ever done to me. It’s rather painful, and the pain is in a very weird place. Nothing like having someone drill into your bones and suck some stuff
out!

Alright, enough for first day… Baby steps.