My Cancer Adventures: The Finish Line

This is a few weeks past due, but I’m now officially done with cancer treatments. My last zap of radiation was back on May 22nd. (It’s worth noting that this was 6 months exactly from the day I got my diagnosis, November 22nd.) Even now weeks later however, the idea of being done with treatments still hasn’t hit me. Life is (basically) back to normal again but neither myself nor Dr. S know what to think of it. We’re readjusting and catching our collective breath. We really plowed through life in the 7+ months from mid-October on - lots of appointments, chemo fun, me sometimes working 6-day weeks, etc. That driving ahead kept us mentally/emotionally on top of everything, but we’re feeling it now. It’s now a point for both of us to slow down and really enjoy the lives we call normal.

The only appointments I have now are for 3-month check-ups. I’ll have one in July with my chemo doctor and then one in August with the doctor I had for radiation. The July check-up is the bigger one as I’ll have the multitude of blood tests done, hopefully get the OK to have my port removed, and hopefully get the even bigger OK that I’m still cancer free.

Since I really didn’t post much during radiation treatments, I’ll share some pictures of the experience. (If pictures are a thousand words, this will make up for my lack of writing, right?) So first up is a picture of my mask for anyone curious. You can’t really tell here, but it’s very detailed. There are indents for my ears, perfect bumps for my brow ridge, and even a bump for my port. I guess it makes sense since it was molded to me and fits like a glove.

How tight did it fit? Well enough to give me the previously mentioned “waffle face.”

Sometimes after treatment I would stop for coffee or, for later appointments, lunch. A huge tip of my hat to the baristas and food service workers that never said anything about my “waffle face” appearance - even though I could totally tell you were wondering “What the hell just happened to this guy?”

I Ran

For the first time in 6 months, I ran. It wasn't fast, it wasn't pretty, and it was interspersed with lots of walking, but today I ran.

For the last few weeks I've been doing lots of walking to slowly get my body more active again. This week though a switch seems to have gotten flipped and my body was itching for more. Today was a beautiful day so I decided to give running a go. I didn't push, I just tried to get my legs used to the feel of running again. My body did have to strain, but in that good exercising way - something I haven't felt in a long time. I could be sore tomorrow, but it will be the best damn feeling ever.

Now in case you are confused by the title of this post and are looking for A Flock of Seagulls here you go:

My Cancer Adventures: They Call Me Mr. Waffle Face

As of today I’m 9 treatments into my 20 of radiation therapy. Time just seems to be flying (so much so that I haven’t kept up with posting). I have a bunch of random thoughts/remarks so out come the bullet points:

• As I mentioned previously, a common radiation side effect is fatigue. So far it’s really just been the fatigue of waking up early in the morning and then driving a half hour to my appointment (most of my daily treatments are in the morning at 7:30 so I wake up at 5:30). In terms of real fatigue, I have none so far. In fact because my body is now basically recovered from chemo, I’m bounding with energy.

• While the getting to and from my radiation is a wearing daily annoyance, the experience while I’m at the clinic couldn’t be better. The radiation staff is super friendly (just like everyone has been) and the treatment barely takes 15 minutes. I just lay motionless on a table for that time so it can be quite relaxing. I guess it’s forced meditation/relaxation time. I mean my head, neck, and shoulders are strapped down by my mask (rather tightly) so yeah, it really is forced. Oh, and I’m laying on a hard carbon fiber table. And the arms of a big machine are rotating around me. And I’m getting hit with radiation. Ok fine, it sounds extra weird but I find it relaxing.

• Yes, my mask is rather tight. It's supposed to be of course, but it took some getting used to the idea of not being able to open my mouth to mumble or breath. I can just barely swallow if spit builds up in the back of my throat. I can breath out of my nose just fine, but I make a point in the morning to blow my nose, have a menthol cough drop, and drink lots of tea to ensure my airways are clear. Additionally the mask leaves a nice imprint on my face - mostly on my chin and forehead - for a while afterwards. The nickname for this by my clinic’s techs is “waffle face.” I've taken it a step further by giving myself the alter ego of “Mr. Waffle Face.” So basically for about 15 minutes after treatment I'm like a lesser known Dick Tracy villain.

• At one of my appointments last week, I had the extra fun of also getting my port flushed. When a port isn’t in use (I haven’t had chemo for just over a month now), it needs to be flushed to it doesn’t clog up and get infected. The flushing literally took two minutes but wow, I really didn’t miss having my port accessed. I didn't miss the now revolting smell of sanitizing solution (I associate the smell with chemo and nausea) and I really didn't miss the jab of a needle in the sensitive port site.

• During all this radiation running around, I've also started a new job. (Let's just throw everything into upheaval!) Basically right at the time I was diagnosed with cancer, I started working two part-time jobs (20 hours a week each). In one of those jobs I'm staying with the organization, but starting a new position. It could be worse, but scheduling new job training on top of the radiation schedule (and the other job still) is just another extra thing. Considering I often worked 6-day weeks while on chemo, I think I can manage this however.

That's what I have for now. I don't expect too much “news” in the short term. It's just the relatively easy (compared to chemo) daily grind of radiation therapy.

My Cancer Adventures: Goodbye Chemo, Hello Radiation

Yes, you read that right. I’m officially done with chemo. My PET scan came back negative for any active lymphoma cells. So for those keeping track, I was able to get away with (yeah, I’ll put it that way) 4 rounds (or 8 treatments) of chemo instead of the 6 rounds (12 treatments) that were initially planned. I didn’t ask, but it seems like my lymphoma died off better than expected.

Now I move on to radiation to be extra sure the cancer cells are wiped clean. According to my chemo doctor and my new radiation doctor, ABVD chemo followed by radiation is a tried and tested method for treating the classic form of Hodgkin’s. I’ll have four weeks of radiation, going in to be “zapped” every weekday morning. Yesterday I had my radiation consultation where I was also fitted for my mask. (Watch the video below from my mask manufacturer and this will make more sense.) This mask keeps me in the same position for every single treatment so the radiation always hits the intended spot every time (and not something else). They warned me that getting the mask made would feel really weird and it did. I thought it would feel more like plastic being stretched across my face but it felt more like a mesh of extra stretchy spaghetti and not so much like plastic. It was weird. It’s also pressed right down on your face, so luckily I’m not claustrophobic.

For those wondering, radiation treatment is pretty harmless. I’m not radioactive or glowing afterward. Other parts of my body aren’t really affected either. The treatment is basically a just a beam that’s slightly more powerful than an x-ray that’s also pinpointed to a specific spot (for me, this is my neck/shoulder area). I really just have a few possible side effects. Because of the proximity of my problem area to my throat, I could have some irritation to my esophagus - basically a dry throat and trouble swallowing. At the spot of treatment, I’ll also have some skin irritation. I’ll just need to apply lotion and keep it out of the sun. Lastly I may have some fatigue, especially toward the end of treatment. This shouldn’t be as bad as the fatigue from chemo however.

Lastly if your mind has gone to me replicating the Spiderman origin story, you’re not alone. I thought of that basically immediately. Besides the logistics of training a spider to perfectly sit on my neck, the radiation isn’t strong enough to do anything that super. Well, I mean it does of course treat cancer - which is pretty damn super if you ask me.

My Cancer Adventures: A PET Scan Primer

In case anyone ever wondered what it's like to get a PET scan, it's a lot of hurry up and then wait. While preparing for my most recent PET scan, I thought I’d write out this quick run through of what the process is like:

Step 1: Technically, the first step is to fast for at least 4 hours. As I had a 9:30 appointment the other day, I woke up early to have breakfast at 5am and then went back to bed.

Step 2: Drive to the hospital, check in at the reception desk, sit in the waiting room, and wait to be called back to the PET scan area.

Step 3: When first in the PET scan area, you get weighed and then get to choose one of two lovely medical grade lounge chairs.

Step 4: Sit in your chair, get your finger poked, and have your blood sugar measured.

Step 5: If your blood sugar level checks out, you then get a small IV injection of what is basically slightly radioactive sugar water. This makes things stand out on the scan.

Step 6: Then you wait for 45 minutes for the sugar water to flow through your system. Hopefully you've brought something to do or read because there's no wifi.

The lovely waiting area view.

Step 7: After the 45 minutes, you're all set for the scan. Well, ok, they have you go to the bathroom first. Once you're on the scanning table you're there for 15 minutes and there’s no chance for a potty break.

Step 8: If you wearing a top with snaps or zippers (metal), you'll have to take that off and put on scrubs. (It will mess up the scan.) With a metal button on my pants, they always give me the option of changing into scrub pants or just pulling my pants down to my knees and covering up with a blanket. I just do the blanket method as it's easier. I also take anything out of my pant pockets at this point. My phone, keys, etc wouldn't mess up the scan since it's below my knees (it only scans your knees up) but it's a precaution so those items don't fall into the track of the moving table. Apparently people have gotten their keys stuck.

Step 9: You lay on the table flat on your back with your arms back above your head. It's a pain for me to get comfortable and still be able to fit my arms through the opening of the scanner. Still it's not as bad as my first scan which happened right after my surgical biopsy and I had very little arm flexibility. My left arm was completely asleep at the end.

Step 10: Basically you just lay there for 15 minutes as the table moves back and forth. You can close your eyes, but you don't want to move. Putting yourself in into nap or zen-like state is definitely recommended.

Step 11: Once the 15 minutes is up, the moving table will be back in the starting position and the tech will announce that you can move and relax. They'll check that the scan came out alright and then you're free to go. You know, once you pull your pants up or change out of your borrowed scrubs...

And that my friends is how a PET scan works. I believe this in now in order:

Does NBC still do these?

My Cancer Adventures: Chemo #8 - Unexpected Surprises

My eighth chemo treatment was Monday and because of my last two treatment rounds, I was expecting the worst. Well, surprise to me - I’m having the best treatment week so far! Sure, Monday and Tuesday were full of naps but already by Monday night I was eating normal non-bland foods. The eating side of life has been so good I’ve mostly forgotten to take my anti-nausea meds! I’ve also had very little fatigue. Yes, I took some naps at first, but on Wednesday I had enough energy to go for a walk. A walk! Two days after chemo! Crazy town!

The real surprise with this round came from my doctor - that surprise being that I might be done with chemo! I had a PET scan this morning to see where things stand on my lymphoma sites. If all is still good - basically if they’re still in remission - I’ll finish off my treatment (and those nasty cancer cells) with some radiation instead of chemo. My doctor stated that it’s not worth putting my body through unneeded turmoil if the cancer is gone. I don’t know what the radiation would all entail yet, but I’m very excitedly optimistic. I know radiation of course has it’s own side effects, but from what I’ve read/heard they shouldn’t be as bad as what I’m dealing with from chemo. 

As I said, my PET scan was this morning. I’ll find out the results (and my treatment plan going forward) next Thursday. Look for an update post then.

Goals (or My Plan to Get Back in Running and Cycling Form)

With five chemo treatments left to go, you might be thinking, “Jon should you be making a running/cycling plan at this point?” Up until last week, I completely agreed with you. One of my chemo nurses was talking in general terms about goals helping people get through to the end of chemo. As you can maybe tell from my last few posts, things were getting a bit rougher and a goal to look forward to has been what I’ve needed. Before, I didn’t want to think about running or biking again because I didn’t want to jinx anything. My PET scan was clear but I didn’t want to get too far ahead and have any cancer come back.

Something clicked though when my nurse said the goal comment. Why am I worrying about jinxing anything? Throughout my cancer journey so far I’ve made it a point not to worry. Worrying doesn’t get me anywhere. If anything, it prevents me from moving forward.

So after that heart-to-heart with myself, I decided on some tentative running and cycling plans. First off, I’m going to take things real slow. I’ll be in the worst shape I’ve been in maybe ever (I’m not speaking negative, just stating facts) and my legs will have lost lots of muscle mass. My wife (who’ll we’ll call Dr. S. on this blog) has remarked how my legs have lost a lot of muscle. Basically my plan is to ease back into running for the first 6 months or so with a walking to running plan. Then I’ll move up to an official 5K plan, then to a 10K plan, and so on. 2017 will be kept really really easy and I’ll progress into the more serious training plan in 2018. My goal events are to do the 25K at the 2018 Afton Trail Run and then possibly the 2018 Twin Cities Marathon. (Just typing the word “marathon” there seemed crazy.)

Cycling I’ll just keep as a cross training activity. There’s not really any events that I want to work toward, but more of a general form level. It’s also easiest to go on bike rides on the weekends - because that’s when I have large enough chunks of free time - but that also makes it hard to make a real training plan. That’s totally fine anyway as my cycling is more of an escape, while running fits more easily into the daily grind (not that it isn’t an escape too).

It’s worth mentioning that I’ve decided that when I do start running, I will treat myself to a new pair of running shoes first. My feet need lots of support - typically meaning motion control shoes and insoles - so the shoe fitting process is very important. After having lackluster shoe fittings the last few times, I’ve been doing running store research. I’ve been hunting down the local running store with the best customer service and fitting process. It’ll be a little bit of a drive for me, but it seems like that store is Mill City Running in northeast Minneapolis. Their reviews always mention great customer service. They also detail their fit process on their website. Boxes checked. Come early June, that’s where I’ll be heading.

So yeah, that’s my plan. I’m sure it will go off track (as all training plans do), but hopefully I’ve left it open enough that I’ll still be successful. I really wish I could start running now (seriously, I don’t think my body and the deepest depths of my soul have I’ve ever wanted anything more), but I just have to be patient.