My Cancer Adventures: The (Sort of) End

Looking back at my last cancer specific post, I really shouldn’t have subtitled it “The Finish Line.” As I’m finding out, there really isn’t a set end so much with cancer. Checkups and other appointments continue for awhile. It’s sort of a fade ending. Life just goes on. 

Speaking of all that, I had my 3-month post-chemo checkup a week ago today. Everything checked out as normal. I am still cancer free. Besides that good news, I also got the all clear to have my port removed. I'm going in early this afternoon for minor surgery. It will be weird to have it gone, but also a relief to no longer have a super sensitive bump (or as I sometimes called the “third nipple”) on my upper chest. 

Without getting too sappy, I’m finding myself quite retrospective today. While I wasn’t diagnosed with Hodgkin Lymphoma until late November, the medical adventures started way back in late September. It’s been a hell of a ride since then. I’ve been looking back at this myself, so here’s an updated version of the brief storyline I originally posted back in March:

• Late September 2016
• Terrible neck/shoulder pain and a lump on the left side of my neck/shoulder
• Visited my regular doctor. Two possible things were coinciding - an inflamed lymph node (my body fighting an infection) and muscle pains. However, if it didn’t get better in a week they would give me a referral to an ear/nose/throat (ENT) specialist. (It didn't get better.)
• October
• ENT doctor - Suspicions were that I had may have an extra rib causing issues. (Yes, a person can apparently get an extra rib on their neck.) I was scheduled for a CT scan.
• The CT results - Not an extra rib but some very inflamed neck lymph nodes. Prescribed a strong regiment of an antibiotic and steroid. (These didn’t help.)
• November
• Needle biopsy
• Needle biopsy results - “inconclusive but suspect” for cancer. A full biopsy was needed.
• Full surgical biopsy.
• The pathology results were positive for cancer, specifically Hodgkin lymphoma.
• December
• Began preliminary tests with my oncologist:
• Blood work
• PET Scan - revealed that I not only had lymphoma on my known neck area, but also on the lymph nodes in between the lobes of my lungs (the mediastinal nodes). That put a stage label on my Hodgkin’s – stage II.
• Received my chemo plan - 12 treatments (or 6 cycles) of ABVD chemo, every other Monday.
• Chemo treatment #1
• January
• Chemo treatment #2
• Chemo treatment #3
• Chemo treatment #4
• February
• PET Scan
• PET Scan Results - Basically clear of cancer. Possibly some remnants, but small enough that they couldn't reliably be picked up by the scanner.
• Chemo treatment #5
• Chemo treatment #6
• March
• Chemo treatment #7
• Chemo treatment #8 - My doctor threw us for a loop, telling us that he was scheduling me for a PET scan the following week. If all was good, no more chemo.
• PET Scan
• April
• PET Scan Results - All clear! No more chemo. No onto radiation.
• Radiation treatments #1-5 (& a port flush)
• May
• Radiation treatments #6-20
• June
• (Port Flush)
• July
• 3-Month post-chemo checkup
• Port removal surgery
• August
• 3-Month post-radiation checkup

There were a lot of smaller things, but two big things got me through all of this. First and foremost was and is Dr. S. This wasn't just my battle with cancer, it was ours together. Like much of what we do in life, we did this hand-in-hand. There were times when she was the stronger one (like most of the time, but especially on chemo treatment weeks), but there were times that I held her up as well. (Cancer takes a toll on the caretaker, just as much as on the patient. It’s just in a different way.)

The other thing that pulled me along can be boiled down to the phrase “defiant optimism.” Early on, basically right when I got my diagnosis, I was defiant that being diagnosed with cancer would not change me. I would not let cancer define my life; I would define my life with cancer. Yes, it affected my day-to-day living, but I still lived on my terms. I drove on and did so with continued positivity. There was no use in being negative about my situation. What would that help? I just continued being my normal happy-go-lucky self. I had a few friends or coworkers mention to me that they often forgot that I even had cancer because I was so positive. There of course was also the nurse who said to me, “You know you’re here for a chemo treatment, right?”

I’m not quite sure how to end this post, so with no better ideas here’s some music. For those that don’t know, I picked up the ukulele a few years ago and while I can’t play all that well, I can at least play this song. It’s always been a favorite, but when I play it now after these months, it always catches me deep down at some point. The video is a bit odd (so just listen if nothing else), but here’s Israael Kamakawiwo'ole's great combo of “Over the Rainbow” and “What a Wonderful World” -

South Dakota: Day 3

The third day of our trip was a bit all over the place. We saw some sights as a whole big family and Dr. S and I did things on our own. There were some very touristy stops and there some drives amongst more Black Hills wildlife.

A trip to the Black Hills would not be complete with a trip to Mount Rushmore. Big touristy places with lots of people are really not thing for us, but we felt like a visit to the national monument was required. As a big family we loaded up multiple vehicles and hit the road. We took another one of Custer State Park’s scenic drives, Iron Mountain Road (Highway 16A). This road has tunnels through the rock like the Needles Highway, but it also has the added feature of multiple “pigtail” bridges. These bridges loop around a full 360 degrees to not only make a turn in direction but, almost more importantly, a quick change in elevation. There were also multiple lookout spots along the way where we could see Mount Rushmore in the distance.

Once at the actual monument, it was already full of people by late morning. We snapped our pictures of the giant presidential faces carved in rock, visited the small museum, bought a patch (I like getting them from National Parks / Monuments, and then we were kind of done. Don’t get me wrong, we’re both glad we saw Mount Rushmore and got to learn about it’s history and carving. It’s a grand feat of human engineering and hard work. In all reality though, it’s really kind of a big nationally funded tourist trap. It wouldn’t be there if it wasn’t for some businessmen and politicians that wanted something to bring people (and money) to South Dakota. Anyway, I digress…

After Mount Rushmore, some of my family visited the still-in-progress Crazy Horse Monument. Instead, Dr. S and I just drove on past it (but still seeing a great - and free! - view of it from the highway) and visited the town of Custer. There wasn’t as much in Custer as we expected, so we didn’t stick around for too long. We poked in and out of a few shops but nothing was really grabbing us. Other family members went the following day and had a better time, so I think Custer just wasn’t for us. Additionally, after seeing all the people at Mount Rushmore I was surprised by the lack of people in Custer. It was a Tuesday, so there would be fewer tourists and it’s further of the interstate than Rushmore or Crazy Horse. But still, it was weirdly quiet.

We headed back to the lodge for a quick lunch and then hopped back into the car to drive Custer State Park’s Wildlife Loop. This is yet another one of the park’s scenic loops, but this one goes through large sections of prairie or other less rocky areas where the much of the park’s wildlife like to hang out. Fairly quickly we saw a few mule deer, but then not much else for a long time. We were starting to worry if we would see anything. It was a hot day and in the early afternoon, so we wondered if the animals would be far away from the road in some nice shady areas. Luckily, we came to a grove of trees where the park’s wild burros were hanging out. These donkeys are the descendants of the original donkeys that were used for treks up to Black Elk Peak. Essentially they were no longer needed and just set loose. The donkeys or burros are quite tame and apparently often go right up to cars begging for food.

After visiting the burros, we continued the loop and continued to see more wildlife. We next came across some pronghorn grazing and then sighted a herd of bison in a wooded meadow just off the road. A little further down we also spied some bachelor male bison taking dust baths to keep the flies at bay.

Heading back toward the lodge, the Wildlife Loop joins onto a more traveled highway, one which happens to go near another fire lookout tower. The Mt. Coolidge lookout tower is just a 1.75 mile drive up a gravel switchbacked road (without any guardrails). It’s another tower built by the CCC, but, unlike the Black Elk Peak tower, it is still an active lookout. You can’t go inside the tower but you can still go onto its lower viewing deck and take in the impressive views. From its vantage point, you can see Mount Rushmore, Crazy Horse, the Needles, and even the Badlands. We squinted through the slight haze to try to make things out, snapped some pictures, and then headed back to the lodge to end day 3.

South Dakota: Day 1 & 2

As I mentioned previously, Dr. S and I ventured to the Black Hills of South Dakota for a vacation with my family. While there and during our drives to and from the area, we were able to fit in a few adventures.

Day 1
Our first day consisted of a long 10 hour car journey from the Twin Cities to Custer State Park where my family was renting a lodge. Leaving at 6am, we drove southwest through Mankato and down to I-90, which we were on basically the whole rest of the way. A few coworkers warned me that the drive would be boring and that as much as you think you don’t want to, stops at Wall Drug and the Mitchell Corn Palace would be a much needed break. Dr. S and I were hellbent on not stopping at these places - and we didn’t! We fought off the thousands of signs for Wall Drug successfully. (We were quite happy once we were past the town of Wall and the signs for Wall Drug ceased.)

I honestly didn’t think the drive was too bad. Southwest Minnesota seemed to drag on a bit - lots of windmills, grain silos, and trains hauling grain - but things got much more interesting once we crossed the border. The landscape became drier prairie, with much fewer trees. We also were not expecting the dramatic river valley of the Missouri River and the change of landscape thereafter. We were both captivated by the rolling prairies and grasslands of western South Dakota. Neither one of us had ever seen ranch country before. As I-90 swept just north of the Badlands, we could see little glimpses of that landscape as well. We were gawking all over the place, which at times was a bit dangerous considering the interstate speed limit in South Dakota is 80 mph. It certainly made the drive go quickly however. By 4pm we were settled into our room at the lodge.

Day 2
The one activity that was an absolute must for Dr. S and I on this trip was the hike up to the lookout tower on Black Elk Peak (formerly called Harney Peak). We broke in new hiking shoes, bought a new backpack (and Camelbak) for Dr. S, and read up on the hike beforehand. Looking at the weather for the week, the very first full day of the trip was the chosen day. Not too hot and no chance of rain. Besides the two of us, a handful of my family also decided to do the hike.

Before I get too far with detailing the hike I should mention the wildlife we saw not even a mile down the road from our lodge. Custer State Park is home to a huge amount of animals (which I’ll list on a later post) but the most iconic is the bison. The park hosts a nearly 1500 head herd that roam freely. (There’s fencing and cattle guards to keep them in the park). Sure enough, our first full day in the park we venture out and see a bison nearly immediately. The car traffic was stopped to allow a bull bison to just nonchalantly mosey down the road. We slowly rolled past and snapped a few pictures. Quite a way to start the day!

Switching back to the hike… We were using the shortest and most used way up to Black Elk Peak, which starts at Sylvan Lake. This apparently is the most popular place in the park by a long stretch, because it was packed with people and we had to hunt for parking spots. With that said, if you visit the Black Hills and want to do the hike up to Black Elk Peak or do anything else by Sylvan Lake, either do it super early in the day (which we should have done) or avoid the summer tourist season.

With a large gain in elevation and a round trip of 6 - 8 miles (depending on which source you were using), we knew the hike would be manageable but challenging. (The final distance of course ended up being around 8 miles.) What we weren’t prepared for were the effects of being in a higher altitude. The trailhead near Sylvan Lake is roughly 6000 feet. Black Elk Peak is at roughly 7250 feet. All of us in the hiking party live below 1000 feet. Quite a big change for all of us. On the way up, we weren’t getting physically tired, but cardiovascularly tired. Our breathing was more labored and we needed to take breaks for water and rest even though our leg muscles weren’t taxed in the slightest. The need for breaks was (mostly) fine however because it allowed us to take pictures and just soak in the awesome scenery.

Once (finally) at the top, Dr. S and I basically ate our small packed lunch right away. It was food first and then exploration. The views from the top were of course spectacular but so was the mountaintop itself. How the Civilian Conservation Corps ever were able to build the lookout tower so far into the wilderness and on this craggy peak of the Black Hills was just amazing. All the members of my family sampled the various viewpoints of the tower and a few of us hiked over to the nearby peak. This is the actual highpoint (and thus the top of the actual peak). I joked that it “was the highpoint of trip” and that “it was all downhill from here.” Groans all around.

After a good amount of rest, we headed back down the trail. The hike down was waaay faster than going up of course, but Dr. S and a few of my family members were just blazing back down. They started just moments before the rest of us but we never caught up to them the whole time. I found out it was because Dr. S really had to use the bathroom (the trail was far too busy for doing business in the trees) and the others with her had just been to Colorado a few weeks prior so the altitude wasn’t affecting them as it was the rest of us.

Once everyone was back down, we reunited with our vehicles and headed back to the family lodge via the Needles Highway. The Needles Highway is a curvy, switchback laden road that runs north-south in Custer State Park and runs through or near some of the tallest towers (or needles) of Black Hills craggy rock. There are also a few one-lane tunnels through the rock. It’s very scenic, but for the person driving it’s also a bit hellish. It’s not really a two-lane road but like 1 - 1.5 lanes wide depending on the section. This isn’t so bad when the people driving at you are considerate. When there are entitled idiots on vacation thinking they get to use the whole road for just themselves...well, you get the idea. The views were great though and we did get to see some wildlife. I did however need a few beers once we got back to the lodge (one for the hike, two for the drive on the Needles Highway).

Needles Highway wildlife - a very scruffy mountain goat

Ups & Downs

Dr. S and I were in western South Dakota for a family vacation two weeks ago so I have a few posts coming from that, but I first wanted to post a running update I meant to post before heading on the trip.

My fitness comeback continues and so does my progress with running. For over a month now I've been running my two mile routes without any walking. I've now even done a handful of three milers without walking. Mostly my pace has been slow, at or even slower than the pace I've run for marathons. I hit what felt (and still feels) like a turning point however on my June 22nd run.

For the first time since I started running again, I was able to run a pace below 8:30 per mile. Granted this was only for 2 miles but it made me feel fast-ish again. Dropping below an 8.30 pace just gives me that little bit of belief that I’ll get there, running will become easier again, and little by little I’ll get faster. Eventually I’ll drop below an 8:00 per mile pace, then maybe 7:30 per mile, and who knows what else. Until then, I’m supremely happy with my 8:30 pace.

I was (literally) brought down to Earth though on the following day’s run. My legs were feeling the previous day’s efforts and I was pushing them too hard. I shuffle-tripped and came crashing down. This was in the crosswalk of a roundabout so luckily no cars were around. Regardless however, I tuck and rolled beautifully right into running again without missing a beat. I had a scraped up knee and a few bruises but mainly it was my pride that got hurt. Like I said, I was just pushing tired legs too hard, but the lingering post-chemo neuropathy in my feet may have played a part as well.

Since then I’ve gone on the South Dakota trip (where I only ran once, really slowly). I’m trying to get back into a running rhythm again as well as continuing my to form a new habit of running first thing in the morning. I’ve typically been an afternoon runner, but I’ve realized that life and hot summer weather often likes to interrupt those late afternoon / early evening running plans. Thus, I’m waking up earlier in the morning and getting in my miles before the day heats up (figuratively and literally). My brain and body are still getting used to the idea of waking up at 5:30 and then running by 6:30, but they’re coming along. It only gets better - easier, faster, farther - from here.

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.