This blog, now and in the near future

The Blog

Since my analytics seem to indicate that this blog has spread far beyond my original audience, and a certain percentage of the current audience is of the not-tech-savvy, confuse-web-address-and-email-address variety, I'll go over a couple administrative-type some things:.

• I have no problem with anybody sharing this blog or anything on it.  My reasoning is this: I'm going to have cancer either way.  So I can either share this stuff and hope it has some positive impact on somebody somewhere (it certainly has on me), or keep it all to myself.  And that just isn't very fun.  I write in part because its somewhat therapeutic for me.  But I also hope this gives you all some insight into what I'm going through, what other cancer patients may be going through, and how you can deal with individuals who are battling this disease (which I hope you never have to do, but from the messages I've received, so many of you already have).  So, feel free to pass this along to anybody, even your entire office as Anonymous commenter did a few posts below.
• Commenting:  When you click on "comments" below any post, you get a number of options.  If you aren't posting under a Google or AIM (are we 16?!) account, you can select either "Name/URL" or "Anonymous."  The comments on a cancer blog sort of self-moderate.  But if you want to comment under a name, just select "Name/URL" and type in your name (you don't have to type anything under "URL," click "continue" then post away.  I really do appreciate the comments, and I'm going to try to chime in on the comments from here on out. 
• Subscribe/Follow: On the right side of the screen are two boxes, one marked "Subscribe" and the other marked "Followers."  You may choose either one if you want to keep up with the blog or be notified of new posts. If you follow me, your little icon pops up just two boxes below mine, and that is a real honor.  
• The Poll: I'll toss up a new poll once I come up with a good question.  The previous poll is currently undergoing scientific analysis and will result in a post in the not-too-distant future.  

The Near Future

I'm heading out to Milwaukee for a wedding this weekend.  I have a couple posts queued up, so there might be some content coming up this afternoon or this weekend, but I'm not sure on that.  I'll be heading back to Michigan on Sunday, and I will probably post again on Sunday night. 

Monday and Tuesday will be big days.  I'm still trying to figure out what I'm going to do blog-wise then.  Ideally, since I'll be sitting around for a long time with chemicals dripping in to me, I'll post short, frequent updates.  I'll get into the nitty-gritty of chemo next week, but in general: I get one drug on Monday that will be administered very, very slowly (to minimize the chance of an adverse reaction).  This could take the entire day.  On Tuesday, I get three drugs that are administered more quickly.  Then I lay around and try not to feel like hell for the rest of the week.  Or something.

You wanna see 'em!?!?

Dr. Okun: Not my physician, but the inspiration for the post title

I have some pretty awesome intra- and post-op pictures of my tumor.  Also, I'm really glad I get to write sentences like that now.  I have mercifully not added them to the front page.  If you want to see them, you can click on the links.


WARNING: These are pictures of a tumor.  They look like they are pictures of a tumor.  If you don't want to look at things like this, do not click on the links.  I won't be insulted if you don't want to look at my tumor.  

Picture 1 was taken while the tumor was still attached to my body.  When I went to UHS, the doctors told me "we don't know what that is, but it's not supposed to be there."  Good diagnosis.  This picture definitely shows that this thing "wasn't supposed to be there." 

Picture 2 and picture 3 were taken after the lump was removed.  The little dangly thing hanging out of the left-center part of the tumor is a nerve.  The tumor had engulfed a nerve and it had to be removed.  So I can't feel myself putting on deodorant anymore.  Which was the only reason I ever wore deodorant.

Some additional info I picked up in the last several days: The tumor had a circumference of 8cm.  It was referred to by various doctors as "large," "substantial," "huge," and "oh shit."  So this was apparently not a normal thing to pop out of my armpit.  It was removed not because it was a threat, but simply because the doctors needed more tissue to use in various lab tests.  Otherwise, it could have been handled through chemo and radiation.  But I'm glad it's out of there because it felt like I had a water balloon under my arm for about a week. 


The surgery was performed (and photographs taken) by Dr. Herman Houin.  Dr. Houin is a family friend.  He is also a plastic surgeon.  If you ever have to have surgery like this, you would like a plastic surgeon to do it.  My scar looks fabulous.  Also, he was the one who performed my biopsy on a whim on Friday, July 23.  Otherwise, my biopsy would not have been performed until last week and I might still be waiting for a diagnosis.  Needless to say, it's a damn good thing I had the biopsy done when I did. 

So, enjoy the pictures.

My perm is in peril (lessons from chemo class)

Before a patient goes through chemotherapy at Henry Ford, he/she is required (I don't know if it's actually required.  I doubt they would just let me wither away if I didn't go to the class.) to take a short "class" on the ins and outs of chemotherapy.  I took my class yesterday, so I figured I'd share my thoughts and experience.

I feel sorry for the people that had to take the class with me.  As you're probably aware, I'm somewhat "upbeat" about this whole situation, and I often confront difficult or tense situations with humor.  Needless to say, my classmates were not as amused by cancer as I seem to be.  And I don't blame them.  I'm starting to believe I'm actually insane.  We were first treated to a lovely video, and on several occasions, I had to bite my tongue to keep myself from laughing.  At a video on freaking chemotherapy.  Instead, I buried my head in my cancer notebook and scribbled some suggestions for improving the chemotherapy video experience.  Here they are:

• If you are trying to convince your about-to-be-chemotherapy patients that they will be treated with the latest drugs, cutting-edge technology, and modern medical science, do not roll the TV cart from Mrs. Applebee's 3rd grade class of 1992 into the room and pop a VHS tape in it.  We watched this VHS video on said TV cart which was 3 feet away from a computer on which 3D images of my body were displayed two days earlier, and about 8 feet away from a 50 inch plasma TV.  The chemo patients in the video were listening to walkmans as IV's drained into them.  A doctor in the video was using that computer from the famous Bill Gates ad.  They listed one of the side effects of chemotherapy as "polio."  Ok, not really, but they were still celebrating its eradication when the video was made.  
• Related, but deserves its own bullet point: If your chemotherapy video discusses the question "What effect will chemotherapy have on my perm?", it may be outdated.
• I know that cancer research has evolved significantly since whenever this video was made, but you think they could have planned for the possibility that somebody under the age of 50 might get cancer at some point in the next three decades.  I'm already 40 years younger than every other person in every waiting room.  You think they could throw me a bone in the cancer video.  The video was entitled "So Many Questions."  Apparently one question that didn't cross their minds was, "What happens if I get cancer and I'm not a member of AARP?"
• I understand the desire to make the film "realistic" by using actual cancer patients, but honestly, shell out the $25 an hour and hire some aspiring actors or something.  Wanna know what makes me more apprehensive about chemo?  Looking at people in various stages of chemotherapy for a half hour.  
• At one point in the film, they showed a woman undergoing chemotherapy, presumably for breast cancer.  She was reading a book.  The title of the book?  All About Breast Cancer.  Good plan.  Quick, somebody buy me a copy of Lymphoma for Dummies.  It will help me escape from my lymphoma for a few hours. 
  

After videotime, one of the chemo nurses goes through a big booklet (we each get a nice Westlaw-type binder with all sorts of information in it).  The main points: everybody has a different experience with chemo, and if you think something is wrong, go to the hospital or call a doctor.


The big issue, though: White cell count.  Chemotherapy drugs do not discriminate between cancer and non-cancer cells.  The drugs target fast-growing cells (and cancer cells tend to be fast-growing, especially mine).  But there is necessarily collateral damages.  For example, digestive tract cells and white blood cells are common targets of chemotherapy drugs.  White blood cells, you may remember from 10th grade biology, are critical to fighting off infection.  So, nurses monitor my white blood cell count throughout my treatment.  If that number goes too low, I'll have to do something like this.  This also means that I would have to watch what I eat and limit my contact with others.  In general, it's really not good to get an infection during chemotherapy, so all of you who have been asking if there is anything you can do: don't get me sick for the next few months.  Wash your grimy little paws if you come near me.  Don't sneeze on my face.  These are simple rules.

Also, we chemo people have special rules for certain foods.  For example, we can eat oranges and bananas, but somebody else has to peel them for us.  So all of you "let me know if there's anything I can do" people are in for a flurry of phone calls and texts asking you to come peel an orange for me.  I have not yet decided whether I will make you feed me the pieces one by one. 

Also, my mother led the Coors Light Question Count by about 17 over everybody else in the room.

My doctors are neighbors

With any serious medical condition, you want a second opinion.  It's not like the second opinion is going to be, "Your other doctor is an idiot.  You just have strep throat."  But the more you hear and learn about your own condition, the better.  Plus, I tend to zone out during class, lectures, and critically important life discussions.  So whatever I missed the first time around, I can pick up during round 2.  Unless I zone out then.  But they gave me some pamphlets, so I'm probably cool.


Anyway, I met with my primary doctor, Dr. Joe Anderson of Henry Ford, on Monday.  Dr. Anderson is a double graduate of Michigan - undergrad and medical school.  This means he is smart and can probably do things better than other people can do them.  Just sayin.  I ended up in the Henry Ford system almost by chance - Dr. Houin, a family friend who performed the original biopsy, is a doctor at Henry Ford.  When he called me to give me my diagnosis, he told me that he had already spoken with Dr. Anderson's office.  When I called Dr. Anderson's office, they had already scheduled multiple appointments for me.  Since lymphoma - especially an aggressive lymphoma like mine - needs to be diagnosed quickly, this was a bonus.  One of the best things about the Henry Ford system is the number of locations they have scattered across Metro Detroit.  If you need something done, it can usually be scheduled somewhere in a short period of time.  With a disease like non-hodgkin's lymphoma, this makes a big difference.

So while I have been perfectly happy with my care at Henry Ford, getting a second opinion is a prudent thing to do.  In our conversations with various doctors (my dad is a medical malpractice defense attorney.  And thank God he is a defense attorney.  If he was a plaintiff's attorney, I would be dead by now), a name came up rather frequently: Dr. Ayad Al-Katib of the Van Elslander Cancer Center at St. John's Hospital.  Dr. Al-Katib does lymphoma the way Benjamin Buford "Bubba" Blue does shrimp.  And since Dr. Al-Katib wasn't killed in 'Nam, this makes him far more valuable to my current situation. 

Anyway, turns out Dr. Al-Katib and Dr. Anderson are neighbors.  Or at least live in the same hood, wherever it is that Oncologists reside.  In either event, they've met.  So Dr. Al-Katib called Dr. Anderson to discuss various aspects of my diagnosis and treatment.  As a patient, you like this.  Either they discuss and agree on certain things, or they disagree and at least you get both sides of the story.  Either way, they share information and can explain or defend their thoughts and recommendations.

In short, Dr. Al-Katib and Dr. Anderson were in agreement on pretty much every aspect of my diagnosis and treatment.  But Dr. Al-Katib recommended 6 cycles of chemotherapy instead of 4.  This is to cut down the chance for any relapse of the disease down the road.  Dr. Anderson wasn't wedded to the 4 cycle idea - that was more of a target in a wait-and-see how I respond approach.  So the number of cycles may be bumped from 4 to 6 (you can easily take the recommendation from a second opinion and use that course of treatment in another health system).  This will be followed by radiation therapy, which should take about a month.  Simple, right?

News of the not-horrible variety

So the cryptic Tumor Board has issued its findings, and the news is what I am deeming "generally positive."  It's amazing what I refer to as "positive" news these days.  I react to "your cancer has not spread beyond your left pectoral muscle" like its "Tommy just sold HALF A MILLION BRAKE PADS!!!"  But, on the scale of 1-10, with 1 being "go home and write your will" and 10 being "we misspelled your funny last name and its actually this poor chap named Nick Cholis who has lymphoma," the meeting was about an 8.

Not sure where to begin.  But I'll start with staging.  There are four stages, 1-4, and each stage is subdivided into A and B.  I'm at stage 2-A.  The PET scan revealed that the cancer is pretty localized.  I would have been a stage 1, except there is a little glowing (on the PET scan, its not actually glowing on my body.  If it was that would be awesome because cancer would be much easier to catch and it would look cool) mass in my pectoral muscle.  Because it's not completely contained to the original mass, that makes it a stage 2.

The other concern was that I had a particular type of lymphoma called "Burkitt's" (DO NOT GOOGLE IT DEAR GOD I JUST GOOGLED IT TO FIGURE OUT HOW TO SPELL THE NAME BUT SERIOUSLY DO NOT GOOGLE IT OR AT LEAST DON'T CLICK ON THE LINK FOR WIKIPEDIA WHEN YOU DO).  Now that you're all back from immediately googling "Burkitt's Lymphoma" and clicking on the Wikipedia link, I can tell you that I don't have Burkitt's Lymphoma.  I have some sort of B-Cell lymphoma that has some sort of mutation or marker or gene...I don't know, it's written in the notes.  But what I have is apparently better.  Better as in "all six bullets missed your vital organs," but that's what lymphoma is: dodging bullets. 

Also, the result of that whole pelvis-piercing episode last week is that the cancer has not spread into my bone marrow.  So, these are more good things.

The pathology showed that the tumor is of the high-grade variety, which means it is more aggressive.  Not super-aggressive, but like drunk-19-year-old-frat-guy aggressive.  But high-grade tumors tend to be more treatable than low-grade tumors, so that's good.  The way my doctor explained it to me: If you're 80, you would prefer a low-grade cancer since something else is probably going to get ya before the cancer does.  If you're 30, you're better off with a high-grade, more treatable cancer.  So, pick your poison.

So: treatment.  The doctor indicated that my next couple months would be "not 100% fun."  My Dad asked, "Well what are we looking at...95% fun?" (Note: Between the my doctor, Dr. Joe Anderson, and my father, the record for "horrendously bad, dry jokes during a meeting with your cancer doctor" was shattered by about 14.  Example: The doctor indicated that my type of lymphoma was "common," to which my Mother asked, "Really, this cancer is common?" and Dr. Anderson responded, "Well yes.  This is an oncology clinic."  Fun times). 

Anyway, I'm scheduled to begin chemo on Monday.  The current plan is for 4 "cycles" (treatments) at 14-day intervals, another PET scan after 3 cycles to determine the rate of shrinkage (of the tumors), followed by some sort of radiation.  There are numerous drugs and shots I'll be taking along the way as well (in fact I might have to inject myself daily, and I don't really like the idea of that so any of you nurse-type people in the area let me know if you want to do this for me.  I'll review your applications with the Tumor Board and select the person who frightens me the least). 

If you're good at math, you might realize that 4, 14-day "cycles" is about two months.  That really isn't a lot of time in terms of cancer treatment.  There's a decent chance the treatment could be amended or adjusted, so I'm not going to plan on being done on any particular date.  I'm done tempting fate.  But this is obviously a hell of a lot better than 8, 21-day cycles of inpatient chemo.

So that's about it for now.  Much more to come on the joys of chemo (I get to take a chemo class on Wednesday!).  Second opinion (which I'm hopeful will be "What are they talking about? You're fine!" but I'm not holding my breath) tomorrow morning.  And some assorted content throughout this week depending on when I feel like posting.  

Equilibrium

My mother showed me my horoscope yesterday.  It said "You're fast on your way to becoming the most positive person you know."  I went back and checked my horoscope for July 30, and it didn't say, "You will catch cancer today," so I think the validity of these things is pretty questionable. I'm not "thinking positive" or any of that stuff.  It's not like I've been walking around like Bob the Enzyte Guy for the past two weeks.  But, a little more than two weeks into this thing, I'm doing a heck of a lot better than I was two weeks ago.

Physically, I feel great.  Not just, "I'm not feeling any symptoms from the cancer," but my condition is actually improving.  My arms have healed up nicely and I only limped for about a day after the bone marrow biopsy.  My sleep schedule has improved from "crack fiend" to "normal unemployed human."  I'm exercising, eating better, and I have more energy on a daily basis.  The cancer seems to be making me stronger.  I'm sorta interested in how long I could let this thing go before I start feeling something.  My doctors are not as enthused by this idea.


Mentally though, this is a challenge.  And probably the most difficult one I have ever faced.  There really isn't a moment where the thought of my disease isn't somewhere in my mind.  It really is constant.  I had various post-bar plans to get my things in order, prepare for my move to DC, maybe do a little traveling.  I can't even think about those things now.  I could do all of them physically.  But I'm just not all there mentally.  Not that I ever was, but you get what I mean.


That said, I'm fine.  I can honestly say that thoughts of this disease or anything associated with it have not once kept me up at night.  I don't lay in bed worrying about this stuff in the morning.  And the thoughts are never at the forefront of my mind.  Just a little voice that reminds me that I'm supposed to be "sick" when I'm out doing the exact same things in the exact same way I've always been doing things.


Still, this all doesn't feel real.  I know that something is wrong with me when I'm sitting in a doctors office, or hooked up to machines, or I'm on my side staring at a wall as a nurse is engaged in an epic battle with my pelvis.  But for me - 25, no prior medical problems, and no other symptoms besides el lumpe (that's Spanish for, "the lump") - it's really hard to believe that I have cancer.  Just writing that feels ridiculous.  I'm sure reading it feels the same way.  Like, what the hell. 

And the timing.  I can get over the whole cancer thing.  But the timing absolutely boggles my mind.  I discovered a lump five days before the bar exam, had a biopsy four days before the exam, took the exam while in cancer limbo, and was diagnosed two days after the exam (and, actually, the day after the exam included the worst travel experience of my life.  US Air is lucky I caught cancer, or else I'd be throwing elbows at their customer service people).  This type of thing only happens in movies.  It's the type of story BarBri makes up to "reassure" students that they are going to pass the bar exam, but instead it just makes students feel like, if they don't pass, they are even bigger failures.  "Hey, this kid passed the bar and he had cancer.  What's your excuse?"  Except it's real. 

Also, I can't get over this: Three weeks before the bar exam, I was sitting on my deck with a couple friends who had been personally affected by lymphoma.  It was 3am.  There were four people left: me, Emily, and these two friends.  These friends were from completely different groups.  They had never met each other, I'm their only mutual friend, and they were in the same place at the same time pretty much by chance.  But they discovered that they had both been personally affected by the disease, and began to discuss their respective experiences.  I admired their strength in the face of such adversity, and I also considered myself fortunate that I had never had to deal with a similar experience in my life.

And so I sat there on the deck, listening to two people discuss their struggles with lymphoma.  I remember the conversation clear as day, because I can't get it out of my head.  I decided to chime in.  "You know, this discussion really puts things in perspective," I said, with lymphoma brewing somewhere in my left armpit.  "Whenever things get difficult in life, I can always think 'at least I have my health.'" 

As long as I live, I will never get over this conversation. 

***

Many of you have said you admire the way I'm handling all this; that you really don't know if you could handle it in the same way.  Honestly, I really don't think I'm that special.  I mean, of course I am.  That's all elementary school taught me.  But I don't think I'm particularly awesome for dealing with this the way I am.  Maybe the blog thing.  But not the rest of it.

That's because humans are pretty good at adapting to major life changes.  If something really good or really bad happens to you, the change quickly becomes a part of your new reality, and you end up judging things based on your new position.  You think you would be happy if you won the lottery; that you would quit work, have everything you wanted, everything would change for the better.  And it's not true.  You would quickly adjust to having more money, that would become the new reality, and you would want more.  Things would still make you angry, happy, or sad.  It's the reason professional athletes will hold out for $18 million instead of $16 million while we all sit here wondering what they're whining about.  In personal injury or medical malpractice cases, juries routinely underestimate the quality of life of an injured plaintiff/victim - victims are often not as devastated as members of the jury make them out to be.

That isn't to say that these things don't have measurable effects or that the effects aren't permanent.  The effects are very real.  But the fact is that this has become the new reality for me.  And that's why I will now celebrate things like "the tumor was confined to your armpit" when a few weeks ago I was freaking out because THERE MIGHT BE A TUMOR IN MY ARMPIT!!!  I can't really say "at least I have my health" anymore, but my overall health (aside from the cancer thingy) helps my prognosis.  I will never get over the timing of this whole thing, but how many times after the age of 4 do you have a block of 4+ months with no work or school to get in the way of your treatment?  This happens three years ago, I don't start law school on time. Two years ago, maybe I don't have a job right now.  One year ago, perhaps Dwayne Provience is still in prison for a crime he didn't commit.

I don't really call this "thinking positive."  I don't think or assume anything "positive" about my disease.  I don't assume it's been "caught early," or that its low-stage, or that it hasn't spread.  I'm fully prepared for chemotherapy to be the seven circles of hell, for my hair to say "screw this, I'm out of here," and to feel the way I did after consuming "Wild Crow."  Maybe other people can "think positive."  If you're wrong, well, no big deal.  Nothing happens to you.  But I just have no desire to get my hopes up.  The things listed in the previous paragraph are objective facts on which I can base my current thoughts.  The things here are just wishes.  And I'll know the answers soon enough.

So, that's how I'm doing and that's how I'm handling things.  And really, I'm doing just fine.  This week will be big.  I meet with my doctor today at 1pm and I'll be meeting with another doctor on Tuesday afternoon.  We should, hopefully, know a lot more in the next couple days.  And whatever news I get, well, I'll just deal with it then.

Besides, there is really only one thing that really terrifies me: the chance that I have an oddly-shaped cranium.