Knocked around

Thursday was pretty forgettable.  I had to get up early to go in for surgery again.  Apparently, during the surgery to install the port in my chest on the left side, the mass in my chest has shifted things around so much that they couldn’t find the vein.  So they poked around a bit to see if the right side might work better, before going back to the left and sorting things out and getting the procedure done.  Just more places to be sore in.  I wasn’t put under general anesthesia for it, but whatever sedation they did give me was still strong enough for me to pass out, only to wake up again in the recovery room after everything was finished.

After getting home, I don’t think I moved much the entire rest of the day.  I don’t know how much of it was recovering from surgery and how much was chemo hitting me, but I had the energy of a drunk sloth on vacation.  Aside from the one time I started coughing to try to clear my throat and then I ran out of oxygen and seized a bit and passed out in my chair, spilling my drink all over me, I hardly moved.  At least my back/hip from the bone marrow biopsy was less sore so I could sit more comfortably all day.  I really hope I’m not that knocked down from just chemo in the future.

Not that I’ve been able to sleep in for awhile, but this morning I had to get to the hospital at 6:45am for an echocardiogram and cardiopulmonary test.  The tests were supposed to be done before starting chemo, but that obviously wasn’t possible.  It was nice to finally have some noninvasive procedures with no needle pricks, but testing my actual lung capacity on machine was a little depressing.  I know I get winded easily and can’t lay in certain positions that constrict my windpipe and apparently if I’m not strong enough to clear my throat with a few coughs I’ll pass out, but trying and failing to score well on my lung tests was sobering.  I’ve forgotten what it’s like to be able to take anything near a full breath of air.

Losing count

At some point yesterday, while sitting in a recliner at the clinic with an IV delivering chemo drugs in my right arm, I tried counting how many needles have poked me in the past few weeks.  In the previous 12 hours, I’d had blood drawn twice from spots millimeters apart on my left arm.  I had an IV for the PET-CT, for my first surgery, and for my first CT scan, but the nurse missed my vein twice before another nurse stepped in, so does that count as 3 or 1?  And there were other blood draws too, but I only fainted the first time, but it should still count.

And for the bone marrow biopsy, I was lying on my stomach (with eyes closed for good measure – don’t want to accidentally catch anything in the peripheral vision), and I’m not sure how many needles they used for that procedure.  Frankly, I still don’t want to know exactly what it looked like, because I’m still a little sore, and because I know one of the needles was like 10 inches long.  So that needle should get a multiplier, right?

Anyway, I quit counting and just continued to let the chemotherapy fill my veins and get to work.  It took 3 hours to get everything in (4 drugs in total – ABVD for short, if you’re interested), but in that time I had some DVDs to watch with my parents and cousin, and the time seemed to go by pretty quickly.

I seem to be reacting well to the chemo well so far, after one day.  However, I’m told the effects usually aren’t felt for a couple days, so tomorrow could be a completely different story.  And bright and early tomorrow I have surgery to get the port installed in my chest, so I’m just penciling in a day of recovery now.  Other side effects take a bit to kick in.  I should still have my hair for another couple weeks.

Called up to the big leagues

I’m still in pain from the bone marrow biopsy (try to avoid getting one) I just had a couple hours ago, so here’s what’s new and what I learned today, briefly.

I had a fever on Friday night and Saturday.  It was pretty unfun.  It’s been getting noticeably harder to breathe over the past few days.  Apparently, in addition to the mass invading my lungs and my reduced-size windpipe, I also have fluid in my left lung.  My oncologist, noting this and my recent PET-CT scan results, scheduled me to start chemo tomorrow (through an IV, since I don’t have the port installed in my chest yet).  I’m so thankful we’re kicking things into high gear now, because honestly, I’m not sure what state I’d be in in a week without the chemo.

On Thursday, I’ll still have surgery to get my port installed, and then on Friday I have a couple more tests to get done.  Meanwhile, I’m tackling questions I never thought I’d encounter as a single 24 year old male, notably, “Will I be able to have kids?”

Overall, I’d say the past 3 weeks were probably the easy part.  I’m into the serious stuff now, kicked off with the bone marrow biopsy.  My oncologist, after finishing the procedure, said, “Just hope you don’t have to ever get one of those again.”  I found that humorous.


It’s been a slow week, but today was more exciting.  I went into work for 2 hours this morning only because it was on my way to Grand Rapids, where I had to go to get my PET-CT scan.  First, let me say that the cancer pavilion there is a beautiful building – the lobby was like a 5 star hotel – and I approve.  It certainly makes things more comfortable.  Also, instead of being in some basement room like at Holland Hospital (where I got my CT scan a couple weeks ago), the PET-CT scanner was in a corner room on the second floor with sunlight flowing in from all angles.

I had to get there early, because apart from checking my blood sugar to make sure my forced diet of zero carbs and sugars over the past 24hrs worked, I had to get the radioactive glucose injected into me, then sit for 90 minutes while it circulated throughout my body.  I was in a private room for all of it, and had a TV with a few channels to watch (but what’s ever on at 10am anyway?) and some magazines to flip through, but it was hard to not just stare at the wall clock.  I also had to drink another chalky barium sulfate contrast solution.

By the way, the PET-CT scanner looked something like this:Not exactly the full claustrophobic tomb I was expecting, so that was nice.  It’s really just a slightly thicker “donut” than a plain old CT scanner.  Another welcome surprise was that instead of the 30-60 minutes the information packet told me I was probably going to be in the machine, I was in and out in 15 minutes.

It does a normal CT scan first, complete with the injection of whatever other contrast stuff makes your veins feel all warm, then the PET scan part, which takes about 10 minutes, and it works in sections, spending about 2 minutes scanning each section before it slides the bed further back and forth for the next section.  During the scan, the radiological specialist/DJ put in the CD I brought with me, and somehow went straight to the last track (which was secretly what I was hoping to listen to), “Impossible Soul” (from Sufjan’s The Age of Adz), because it’s a 25 minute long track that allows you to lose track of time.  Indeed, I was out of there before the track finished.

On the docket for next week: I have my first appointment with my oncologist on Monday, where I have a million questions about chemotherapy that I want answered.  Then, on Thursday, I’m scheduled to go in for surgery again to get the port installed in my chest.  We’re crossing our fingers I can start chemo on Friday, but who knows?

(Relatively) Good News

My results are back from the biopsy – it’s Hodgkin’s lymphoma.  It’s what we were hoping to hear, because I’m told it’s probably one of the most treatable cancers.  I don’t really know a ton of specifics regarding exactly what classification of Hodgkin’s it is or what stage it’s at, but it’s good to finally have an actionable gameplan.  The next step is to get a PET scan, which will require a quick jaunt over to Grand Rapids because that’s where the closest huge claustrophobic machine is.  That’ll allow them to get a better picture of exactly which cancer cells are most active, so they can fine tune the chemotherapy.

Next, I’ll go back into surgery to get a port installed in my chest just below my collarbone, which will allow all those wonderful chemo drugs to go right to work that much quicker and easier.  Once that’s all rigged up, I should start chemo pretty soon thereafter.  It’s doubtful I’ll get into surgery this week, but early next week seems likely.

For now, I’m still just watching DVD after DVD after getting home from work, but right now I’m off to the hospital again to get some more blood drawn so they can test to make sure my kidneys aren’t going to cause problems with the chemo or anything.  Hopefully I won’t faint this time!

No news

Get used to this game, the waiting one.  The results of my biopsy aren’t back yet, and won’t be until Monday or Tuesday, so I have nothing to report to you all.  It looks like I won’t be starting chemo next week either with everything getting stretched out scheduling-wise, so if you do know how to make test results suddenly appear, start working your magic.

In the meantime, I’ve been thinking back a bit, trying to remember if there were times when I might have noticed anything was amiss, like this reduced lung capacity I have.  Obviously two weeks ago when I was hiking in the Smoky Mountains I noticed I was stopping to catch my breath more than my friends, but even then, my first thought was naturally, “I’m more out of shape than I thought” not, “I bet I have cancer.”

Moving further back, throughout the winter, I kept a pretty consistent workout schedule, but always with an eye more towards accumulating base miles and never towards speed.  I probably averaged three days a week on my bike inside, and one day a week running outside.  I can’t say that I ever felt extraordinarily sluggish, but it’s hard to judge pace and effort on a stationary bike while watching TV or running outside through the snow without a watch.  Therefore, without pushing my limits in a race or training, I guess I never really used up all the air in my lungs.

However, back in October and November, I did a few cyclocross races, and, well, I really kind of sucked.  Like, 3rd-from-dead-last kind of sucked, and against people who I could easily beat in triathlons earlier in the summer.  Again, I chalked it up to factors like “I’m not good at technical bike courses” and “I’m riding a heavy bike that’s too small for me” and “Sprinting never was my specialty”, but now that I think back, I was sucking wind pretty hard during those races, and I definitely pushed myself to the limit – there was just no top gear to shift into while racing.

I’m hesitant to go back much farther, because I can only think of a couple really tough races where I was so out of breath I had to walk, but those were trail races over sand dunes and everyone was walking.

It’s just still pretty creepy to think that I have a softball growing in my chest.

Midweek update

My surgical biopsy went well yesterday.  I remember getting wheeled into the surgery room, sliding onto the bed for surgery, getting a warm blanket put on my lower body, and then the anesthesia fully kicked in and I was out and woke up afterwards in a recovery room.  My neck is still a bit sore, and I have to keep the dressing on it, but I have a huge bottle of Vicodin that will probably be impossible to completely use up, so I’m doing just fine.

For now, all there is to do is wait.  I might hear the results of the biopsy tomorrow, or maybe not until Monday.  I’m back at work right now, making sure the world gets their office furniture built correctly and on time.  Some of these problems at work seem so trivial and ridiculous in comparison, but they can be funny to think about.  For instance, apparently for one of our line of cubes, we’ve been building them slightly too big out of tolerance forever, and now that we recalibrated the manufacturing process to make them the exact correct size, all sorts of pieces don’t fit together anymore.  Good to know that all these dimensions I calculate to the thousandth of a inch don’t really matter.

Anyway, thank you to everyone who’s sent a note, they mean a lot.  I also am sorry that I didn’t personally tell some of you about all this earlier and you had to find out through this blog or word of mouth, but, well, things have been changing rapidly in the past week.  Shit happens.

You may want to sit down for this one

OK.  So.  I’m going to keep this short and to the point for now.  I found a lump on my neck.  It is not good.  It is lymphoma.  It’s not noticeable if I’m wearing shirt, but yeah, it’s not exactly hiding out either:

a lump

Last Monday I went to the doctor to get it checked out.  Blood work and a chest X-ray were ordered.  Something was seen on the chest X-ray and a I had a CT scan of my neck/chest/abdomen/pelvis done on Wednesday.  Results came Friday, and there’s a lot of swollen lymph nodes in my chest.  Like, the size of a softball.  In my chest, somewhere.  Where it all came from and how it all fits, I have no idea.  It’s big enough to constrict my windpipe and a major artery a bit, so I’m not exactly planning to just let it chill there.

Black parts = my lungs. Grey parts = lymph nodes taking over my lungs.

I’m going into surgery tomorrow morning for a biopsy, where they’ll cut a chunk of that lump in my neck out to take a closer look and see what kind of lymphoma it is and what treatment path to go down.  Good news is, most lymphoma is treatable.  We just don’t know which kind it is yet.  If it’s Hodgkin’s, I’ll probably get put on chemo right away and I’m told it’s highly effective.

I have lots of support right now from family and friends, and I appreciate all of it, but right now, there’s not a lot of additional help I need.  I’m still pretty much fully functional, and plan on being back at work on Wednesday, because it helps to take the mind off things, so right now, we just kind of have to wait to take further action.

I think I’m taking everything pretty optimistically for now, but well, everything still feels a bit like a dream, and I’m a little floored by it all.  I nearly fainted in the doctor’s office today when I found out about the softball sized mass in my chest that’s trying to kill me.  Waiting is hard.  I’ll keep you all updated.