Status

Too Hip to Make a Pun

Only have time for a quick update today, but it’s a doozy. My meeting with the Orthopoedic Oncologist yesterday revealed two things:

  1. The “hot spots” in my legs are not active cancers, but substantial bone damage from the original cancer.
  2. Before we can continue, I need an immediate “partial replacement” of my left hip joint.

These doctors move fast, so that surgery is scheduled for about two hours from now. I’ll be in-patient the rest of the week recovering, but I’ll have my laptop and superwife so I’ll almost certainly have a better week than any of you.

I know you have questions, so I’ll answer two that I’m just gonna make up right now. Yes, you in the plaid?

Q. Hi, I’m a real idiot. What is a partial hip replacement?

A. Hi, friend. There are no idiots, only terrible school systems that have been abandoned by those in power and given no path to succeed due the collapse of the middle class and unionized labor.

What was your question? Oh, right, that dumb thing where you can’t read. Well, buddy, take a good look at this picture:

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Now you know what I know, which is that the plan is apparently to replace my bones with something suspiciously resembling a marital aid (or “shower massager” for the conservative men out there).

Was there another made up question?

Q. But Ed, you are my sunshine. With you out of commission, who will make us laugh? Who will bring us joy? Where will the sun go?

A. Oh, you poor poor fool. There are other heroes in the world. While it’s true that I am as close to a perfect golden demigod as man has yet produced, clearly some of the people below are able to bring you some happiness. Just look at their well thought out public relations campaigns!

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Here we have the friendly Aquaman, being “Fair.” How is being fair? Well, clearly little Braden here has damaged the turtles ecosystem. In return, these majestic reptiles have gotten baked out of their minds and are prepared to eat this small boy. That’s underwater justice.

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And you can’t forget Batman, being all “Trustworthy.” As we all know, nothing says “Trust me!” like an anonymous middle-aged man putting on a mask and flying away with inner city children. He’s an example for us all, especially the serial killers and pedophiles.

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And finally, we have The Flash, doing a good deed that couldn’t possibly be misconstrued. There’s no way anyone could look at this well thought out picture and see something like, oh, I don’t know, a symbol of white authority with power beyond those of his fellow citizens using that power to take an underprivileged and likely uninsured child of a historically oppressed people, and removing him from private healthcare property at super speed!

Wait… did he electrify that kid’s wheelchair? The hell? You’re a real jerk, Flash.

(Images courtesy of Mike Sterling of Sterling Silver Comics)

Pop Secrets: Jobs (Part Two)

I’ve had a pretty strange life, especially when I was younger. In the event that this whole cancer thing doesn’t end well, I’d like my two sons to know about all the dumb things I’ve lived through and poor decisions I’ve made. In the hopes that my children will learn from my many mistakes, I present: Pop Secrets.


Dear children,

How are you? Would you like to hear more about your father’s fascinating work history? Of course you would. And so…

Job #4: Warehouse Labor – 1995

I spent my last year of High School in Maine, at a boarding school called Kent’s Hill. When I came back down to Massachusetts at the end of my school year, I didn’t really have anywhere to go or anything to do. So I moved in with my grandmother in Arlington for the summer, and got a job working in a warehouse in Chelsea.

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The name of the company was Eagle Air Freight, and my work day consisted of loading and unloading tractor trailers. Trucks would pull up, full of the most random things you can imagine, and we would stack the contents onto pallets and wrap them up for the forklift to take back into the warehouse.

The trucks were mostly filled with boxes containing who knows what, and I never knew what I was going to find when I opened the next truck. The worst was always rugs. Rugs were a pain to unload and even worse to try and stack onto a pallet.

When I started working there, I knew it was just until I could find something better, but most of the employees were there for the long haul. During my time there, some of the employees were trying to join a union, which was something the ownership really didn’t want. I didn’t have a dog in the fight, so I stayed out of it as much as possible, but seeing the animosity it caused and the levels each side stooped to were pretty eye opening at the time.

Anyway, I worked that job for part of the summer, then found something a little less labor intensive.

Job #5: Warehouse Labor – 1995

Having spent nearly two months working in a warehouse, I decided a change was in order and spent another two months working in a different warehouse.

In Boston, directly across the main entrance from Fenway Park, was a large store front called Twins Enterprises that sold sports memorabilia (mostly Red Sox for obvious reasons). What most people didn’t realize was that directly behind the store was an even larger warehouse of that same memorabilia, and that was where I worked.

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This picture brings back memories. I can almost hear the racist chanting from drunken Sox fans…

My job was to pick up order sheets from stores around the country that had lists of goods for me to gather and pack. The packing list was almost always entirely baseball hats, so I’d grab a long cardboard box and go through the warehouse gathering the correct amount of hat styles and putting them into my box, then gather the boxes together for shipment.

I liked this job a lot more than working in the other warehouse, both due to the relative ease of the job and the location. Rather than being in some isolated industrial park, my new job was right in the middle of everything. During my lunch break I could just sit and eat my food in front of Fenway and watch the people go by.

There was an office in the warehouse that I didn’t spend much time in, but there was one guy who fascinated me. His job was to design the hats. Every time I walked past the office, I could see him there – Sitting in an air conditioned room, working on a computer and moving team logos around to see where they fit best. He didn’t look like an artist or a creative guy, he just looked like another warehouse worker. How did he get that job? I had no idea, just that I wanted it.

After a few months of working at Twins, I figured out that the problems I was having weren’t going to be solved by working at a different warehouse, and decided to leave. This was right around October 3rd, 1995 a day that you won’t know about or care much about, but was pretty important at the time.

Y’see, there was this court case involving O.J. Simpson, a very famous football player who had been charged with murdering his ex-wife and her boyfriend. That trial had been pretty big news for the past year and a half, and the jury was to announce their verdict during my lunch break that day. I didn’t really hang out with people from work (I wanted to spend my free time reading, while they preferred to smoke pot and discuss their “investments”), so I usually spent my lunch break walking down the block to this bar and pool hall that had an arcade in it.

Side note: One day I walked in there for my lunch and they were filming an ESPN “Ladies Billiards” special, featuring a pool player nicknamed “The Black Widow.” She appeared to be very good at pool.

Anyway, I went down to the arcade as usual on that day. I think I had even forgotten that the verdict was going to be announced until I saw everyone (and I mean everyone) crowding around the big screen television in the bar.

It’s important, at this point, that I explain something about this trial: Every Caucasian Person in America knew that O.J. Simpson was guilty, and had killed those people. Sure, the police hadn’t been perfect, and might have screwed up a couple of things, and okay, yeah, fine, it turned out the lead detective had been caught on tape using constant racial slurs, and then lied about it on the stand, but still! He was guilty! This case was a slam dunk.

The thing that Every Caucasian Person in America didn’t know (and certainly didn’t care to find out), is that police departments, and in particular the Los Angeles Police Department, had been fucking with their brown skinned citizens for decades. Lying, setting people up, beating them, committing outright murder, and no one had done a damn thing about it. Now those same brown skinned Americans were on a jury, watching one of their fellow Americans be harassed by that very same police department.

So you can imagine why they came back with a verdict of Not Guilty. Although I’m not sure you can imagine the extent to which Every Caucasian Person in America lost their goddamn minds. I didn’t have that much of a reaction – I wasn’t enlightened, just self-absorbed and had my own crap to think about – but everyone in the bar around me, and in the street on the way back to work, and on the rooftops, and in their cars, all had plenty to say.

Anyway, I left that job shortly afterward. You should read about the O.J. thing, it was pretty crazy. There’s a fantastic (but long) documentary available online called “O.J.: Made in America,” if you want to know everything.


It was at my next job that I finally found a place I enjoyed working, and work I enjoyed doing. It was a job so fun, and so influential on me, that it’ll need a whole post of it’s own…

The Way Things Is (as of October 28th)

Oh boy, has it been a week.

I’ve been trying to post regular updates, making sure to put out at least a status update each Wednesday. It’s now very early Saturday morning, and this is the first time I’ve had the time or ability to actually sit down and write something.

Starting last weekend, I’ve been feeling more and more like something was wrong, internally. The pain in my left leg has come back, and is generally staying at its highest level. The good news is that if I really work at it, there are ways I can arrange my legs that will lessen the pain somewhat, but any kind of pressure (including walking) will immediately fire it back up again.

I’ve also been having a high temperature, and it kept creeping up over the course of the week. Over the weekend, it was in the 99s. By Tuesday, it was over 102. I called my oncologist’s nurse each day to see if there’s anything I could or should be doing for the fever or leg pain, and the answer has been to take Tylenol and increase my painkiller dose.

Finally, Wednesday morning, after spending three days sleeping two hours at a time with a wet washcloth on my head, I went into the Emergency Room. I knew there wasn’t much they could do, but my symptoms were starting to mimic what was happening when I had sepsis back in July. That infection nearly killed me, so I decided going to the ER to run some tests on my blood was the safe thing to do.

The staff at St. Luke’s East agreed with me and admitted me pretty quick. They took cultures of blood and urine and mucus to make sure there was no infection, and admitted me overnight for observation.

While I was still being admitted, I started getting phone calls from a different hospital, the University of Kansas. They’re the ones who are handling my bone marrow transplant, and sure enough that’s what they were calling about.

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You can’t see my phone here, so just pretend I’m talking into my hand because I couldn’t find a banana

If you remember from last week’s post, scans had found hot spots in both of my legs, and we were holding off on the transplant until we could have an open biopsy to get in there and figure out what was going on. Well, throw that out the window. Now it’s been decided that they’re just going to move forward with the transplant no matter the results.

(Well, that’s not true… if they find a family of malignant Fraggles living in there, that might delay things by a few weeks).

They’ve already selected a donor (all I know is that he’s a 20 year old male, and his blood type is O+), and they’ll be getting him ready over the next few weeks. In the meantime, they’ve scheduled a veritable plethora of appointments for me. Over the next two weeks, I have every possible kind of test scheduled, as well as meetings with a psychologist, a financial planner, a social worker, a teacher, a Native American Shaman, a protocol droid, and Xanthos, the Zoroastrian demigod in charge of medical billing.

The current plan is to have the transplant around Thanksgiving. There’s still a lot of dominoes that need to fall the right way to make this all work, but it feels good to be making progress.

In the meantime, the fever has stabilized somewhat. It’s only gone over 100 degrees a couple of times since I was discharged, and the Tylenol seems to be helping. The leg pain remains a real problem; My oncologist keeps telling me to take more pain medication, so that’s what I’m trying. We tried out a few other painkillers while I was at the hospital – Morphine didn’t do much for the pain but did give me immediate nausea every time it was administered.  Fentanyl, on the other hand, worked great for the pain. The only side effect was that it caused me to sing an a capella version of Avril Lavigne’s “Girlfriend” to my very patient wife.

I’ve spoken with a pain management doctor, and I have an appointment one of these days to see about getting a Fentanyl patch, which sounds like it would be a big improvement.

Finally, one last thing…

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I WARNED YOU THEY WERE TRYING TO TURN ME INTO A GOSH DANG HULK!

 

 

 

 

The Results are In…

Yesterday was the day we’ve been waiting for for a while now, the results of my post-chemotherapy tests. If I’m cancer-free, we go forward with the bone marrow transplant. If not, we start over.

Anyway, we got the results, and they’re kind of a mixed bag.

The Good News

The biopsy of my bone marrow shows absolutely no cancer. This is great news, as the bone marrow is how the cancer was spreading and what was causing my pain. It’s also typically hard to remove from bone marrow, so it shows that the chemotherapy was pretty effective at getting it out of there.

Even better news is that they’ve found several 100% matches for my bone marrow transplant. This means that once we start the process, it can move forward really quickly. According to what we’ve read, other people have to wait months to find a donor, so I’ve been really lucky here.

Personally, I’m particularly excited about the fact that the type of bone marrow transfer I’m getting means that my immune system will be completely overwritten by my donor’s immune system. That means I can say goodbye to my Celiac disease, and probably some of my allergies as well, which is fantastic news.

The Bad News

Unfortunately, the results from my PET scan were less great. They showed “hot spots” in both of my femurs, which are areas of increased cellular activity. The scan doesn’t show exactly what’s causing the increased activity in my legs, but it could definitely be a second cancer (it could also be an infection, though that’s less likely), so we can’t move forward with the transplant until we know exactly what’s happening in there.

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Much like this great picture of Toad, it’s my legs that are troubling.

To get some answers, a normal biopsy isn’t going to cut it here, so we’re going to have to open up one (or both) of my legs and really get in there to see what the trouble is. I have an appointment next Thursday (the 26th) with an Orthopedic Oncologist, where we’ll talk about the surgery and hopefully get it scheduled. Even after the surgery, it’ll be another week before the results, so it’s going to be a while (at least three weeks is my guess) before we know what’s causing these hot spots.

I hate not having answers, especially when I have so many family, friends and co-workers worried and wanting to know how things are going, but I’ll take the good news where I can get it, and the fact that I have no scheduled chemo for at least the time being is a great feeling.

The Way Things Is (as of October 18th)

Last Saturday was my 40th birthday. Haley and I typically don’t do much for each other’s birthdays (or Christmas, or holidays), preferring to save up our money for our annual anniversary trip, but this year she surprised me with my very own comic spinner rack.

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Now I can pretend I live in a 7-11 circa 1988!

It’s silly, but it’s something I’ve wanted since I was a kid. It says a lot about how awesome my wife is that she not only found such a great gift, but is perfectly fine with keeping a spinner rack full of old comic books in our nice, classy living room. I’m a lucky dude.

Believe it or not, that wasn’t the coolest thing she did for my birthday this year. The other thing she arranged was so bonkers that it deserves a whole post of it’s own, so look for that later this week.

I spent most of Monday at the University of Kansas Hospital, undergoing tests. First was a PET scan, then a CT scan, and finally a bone marrow biopsy. The scans were fine, and actually seemed to go quicker and easier than the scans I’ve had previously. I’ve had CT scans that took over an hour and a half, but this one only took about twenty or thirty minutes.

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I may have dozed off while waiting for my biopsy

The biopsy went about as well as can be expected for something that involves my bones and a power drill. At least this time I was sedated. It’s been a few days, and my pelvis is still sore from the drilling, which is a sentence I never thought I’d have to write.

On Friday, we’re going back to University of Kansas for the results from all those tests. It’s hard to overstate how important those results are; If they show that I’m in remission, I’m moving forward with the bone marrow transplant. If they show that I still have active “hotspots,” we’re going to have to restart the chemotherapy, only stronger and with the addition of radiation. Either way Friday is going to be a pretty big day.

We had a bit of a scare last night, as I’ve been feeling a little sick. With my immune system so weak, I have to be very careful about any symptoms of an illness, and last night my temperature got up to 99.8° which is luckily where it peaked. I literally had my shoes on and was about to leave for the ER when my temperature started coming back down.

I have a bunch of things I want to blog about… Logan’s 14th birthday, Haley’s brother Matt coming out here for a week, the process of finding an estate lawyer and filling out a will… but my energy levels have taken a real dip this week. Hopefully after a couple more days of rest I’ll be back to posting regularly.

The Way Things Is (as of October 11th)

This past Monday was my last scheduled chemotherapy appointment. Next Monday I’m going to the University of Kansas for a whole day of fun tests – First a PET scan, then a CT scan, and finally another biopsy. The results from those tests should be ready by that Friday, October 20th, when I’m going in to review everything with the transplant team. They’ll tell me at that point whether or not we can move forward with the bone marrow transplant.

Either way, there’s going to be more chemo appointments. If the cancer still isn’t gone, we need to kill it. If it is gone, we need to destroy my immune system to the extent that we can shove someone else’s stem cells into me without my body putting up a fight.

I’m actually feeling pretty good after this most recent round of treatments. My energy level is okay, and the pain has been minimal. There’s some muscle tenderness, and some painless spasms in my legs, but nothing too bad.

Mentally I think I’m doing better as well. That weekend we had last month where my son spent the night in the hospital, my cat died, and my doctor told me my chemo wasn’t working, all in less than 48 hours, took a lot more out of my spirits than I realized at the time.

There’s going to be a lot of things to deal with when this is all over; debt, getting my work back on track, etc. While some of that is anxiety inducing, it’s a weirdly comforting thought that I’ll only have to deal with all of that once I defeat cancer.

Basically, there’s no reason to sweat the future if my own goddamn blood can’t kill me.

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The Way Things Is (as of October 4th)

This week is the start of my fifth round of chemotherapy treatments. I spent all of Monday in the infusion center, getting the stronger medication that’s part of my new treatment regimen.

I usually don’t feel too bad after a day of treatment (the fatigue usually comes a few days later), but this one was pretty rough. I spent the first couple of hours feeling an urgent need to vomit, and my head was throbbing. Laying down to rest around 6pm resulted in me finally waking up about twelve hours later feeling a good bit better, the headache and nausea gone.

As of tonight (Wednesday), I’m back to the usual symptoms of fatigue and lower leg pain. The fatigue really is something else… it doesn’t matter how much rest or sleep I get, I just have absolutely no energy. I had to walk down to the basement for something yesterday, and even that left me out of breath and weak.

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Like this, only 80% less cute

The lower leg pain isn’t that bad at the moment, I think it’s mostly from swelling due to water retention. It feels like everything below my knees is attached to weights, which makes walking difficult and keeps me off-balance.

This is the second time I’ve gone through the new treatments, and if it’s anything like the first, this weekend is when the fatigue and pain will really hit me, so we’ll see.

Mentally I’m doing okay. I had a talk with my oncologist before my chemo on Monday, and he was still mostly encouraging. While he couldn’t rule out the new pain I’ve been having in my left leg as a new metastasis, he thinks that it’s far more likely to be pain due to bone marrow in my pelvis rebuilding.

I have some pretty big tests scheduled for October 16th, which will determine a lot of what happens next. If those tests still show some remaining cancer, then we’ll basically have to start over but with the addition of radiation treatments, which doesn’t sound very fun.

If the tests show that I’m in full remission, then we’ll move forward with bone marrow transplant, which is its own set of worries. If you want to sleep tonight, do yourself a favor and don’t research the possible side-effects of Graft vs. Host Disease. It’s not nearly as funny as Arrested Development made it seem.

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Like this, only 80% more blood