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.

My Cancer Adventures: That Warm Tingly Feeling

Yeah. I don’t mean a “warm tingly feeling” in the good sense.

Lately, a common side effect of chemo has been flaring up and well, really dragging me down. I’m referring to neuropathy - or for me, a burning pins and needles feeling - in my feet. Wait, that’s putting it too simply. It also makes my feet extra sensitive to touch, sensitive to cold, and achy. This all happens in my hands sometimes too but my feet have it much worse.

I want to say there’s some Army or hiking saying about taking care of one’s feet, because once they start to go, you’re stuck. As one that’s normally using his feet quite a bit, I’m starting to feel that way. If I’m up on my feet for too long - 10-15 minutes maybe - they hurt.

I brought the issue up to my doctor at my last oncology/chemo appointment, but there’s really not much that can be done. They can dial down the drug in my chemo cocktail that causes this, but it doesn’t always solve the problem. Plus they’re hesitant to do that because it’s killing the cancer. I’m of course hesitant for the same reason. (Let’s see… killing cancer or tingly feet. I think I’ll take the tingly feet every time.) There also is a medication I can take, but it’s not always that effective and it causes drowsiness. Additionally, the neuropathy usually lasts 6-12 months after the end of chemo for most patients. Unfortunately for some patients it can be permanent. (Again, even with running as a hobby, I'll take lifelong neuropathy over cancer. That's not to say that I'm not crossing my fingers, knocking on wood, and performing every other good luck charm in the hopes that it's not permanent.)

My best bet right now is to find adjustments that can make the neuropathy more bearable. Obviously, I’m trying to limit my “on my feet” time. I’m also cycling through all my shoes trying to find that right Cinderella fit. It seems like if the shoe is too tight - or tight against my foot in the slightest - it causes problems. My normal work shoes - which are Merrell hiking shoes - were really making my feet act up. I moved on to my current running shoes , which were better but still not so great. Right now I’m trying my older pair of running shoes, ones that I didn’t like all that much for running. So far they’re working, even on days at work when I’m on my feet a lot. I think these shoes are just wider and roomier. I really hope these continue to work, otherwise I’ll probably need to try out a pair of Crocs (just shoot me now).

Yay! Shoes that work! And they're not Crocs!

**Update in between writing this and getting it posted on the blog: My older running shoes seem to be working. I can be on my feet for a normal amount of time before the neuropathy gets unbearable. One big downside I forgot to mention above is that this neuropathy is bad enough that I can’t really go for walks anymore. Since I don’t have the energy to bike or run, that was my outside activity for the time being. As the weather gets nicer I’ll just have to try some yoga or other flexibility exercises on the deck. It’s too nice to be in the basement playing Wii.

My Cancer Adventures: From Walk Through the Park to Crawling Through the Mud

Ok, that title makes this way more dramatic that it is, but the early part of last week pretty much sucked. My chemo has been pretty manageable so far – I have decent energy (except the day of and day after chemo), my appetite hasn’t been crazy affected (I’ve actually gained 10 lbs), my hair is still holding on, I’ve only had some mouth pain (and not mouth sores), and I am only starting to get neuropathy in my feet and hands. Last week though – well like I said –  it kinda sucked.

Before chemo last Monday, I had a bowl of Cheerios. After chemo, I had nothing for lunch and could barely stomach five bites of bland noodles for dinner. I just wasn’t hungry. Food wasn’t appetizing. I also was crazy tired and just wanted to lie in bed (but that’s to be expected). The Tuesdays after are typically better, but this time – like my last chemo treatment cycle –wasn’t. Again I didn’t want to do anything but lie in bed but my lack of appetite  and nausea wasn’t getting any better. I know I had some Cream of Wheat for breakfast, but I think I skipped lunch. My hunger started to come back around and I had some bland mashed potatoes and gravy for dinner. On Wednesday I tried going to work, but left at noon. I think I was just so thrashed energy-wise from both the chemo and from not having eaten much the last few days prior. After an afternoon nap I was able to eat some more mashed potatoes and a bland chicken quesadilla.

I went to work Friday and felt mostly normal. Nausea was still present but waaay more manageable. I could start to eat normal things so that helped. I’ve also been hungry again. I also have realized that I seem to get more nauseous when I’m hungry, no matter how I’m feeling otherwise. So I need to listen to that. Also, my energy has been mostly better. Thursday and Friday were good for energy, but Saturday wasn't so great because I didn’t sleep the best the night before. This week has now been fine (as recovery weeks normally are).

While I’m quite aware that I’ve had it pretty easy compared to others going through chemo, I’m also growing in awareness that these last few months are going to suck. Just five more treatments, just five more. I can count them on one hand.

We got this.

My Cancer Adventures: Prologue

I had to sneak that dramatic cancer mention in my initial post, so I should give some details for family, friends, and (though I’m doubtful they exist) other readers of this blog that didn't know I had cancer. This could easily turn into a really long post, so here’s the quick and dirty details:

• Late September 2016
• Things all started with terrible neck/shoulder pain. One night when trying to massage out the pain, I found a lump on the left side of my neck . Visited my regular doctor, who thought I might have two issues – 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.
• October
• Things didn’t get better so I saw an ENT doctor. My lump was really hard at this point, so his initial physical inspection thought it might be an extra rib (Yes, this is a thing. A person can get an extra rib on their neck.) I was scheduled for a CT scan the next week.
• The CT scan clearly showed it was not an extra rib but some very inflamed neck lymph nodes. I was prescribed a strong regiment of an antibiotic and steroid in the hopes that it would clear things up.
• November
• As you can guess, the meds didn’t help. The next step was a needle biopsy of the lymph nodes and truly get a sense of what my lymph nodes were up to. That biopsy came back as “inconclusive but suspect.” Vague as hell (I know), but at least it pointed in some direction.
• The next step was a full surgical biopsy. This happened just before Thanksgiving. For this I was put completely under, which was really good since afterwards my ENT doctor (who did the surgery) mentioned that he had to move a major neck muscle and my jugular vein out of the way to get to the lymph node mass. I was horribly nauseous though the next day or two from the anesthesia. It’s also worth noting here that my neck/shoulder pain ceased after surgery. The cause was the mass pushing against my neck/shoulder muscles and nerves. With it somewhat cleared out from the biopsy, problem fixed.
• The pathology results were not what my wife and I wanted but were something we prepared ourselves for: cancer, specifically Hodgkin lymphoma.

I visited lls.org a lot for a week or two.

• December
• Started down the path with my oncology team and for a while was having lots of tests done. Many were safeguard tests to make sure that my body could withstand chemo, but I also had some extra important tests performed. First was blood work (to get a baseline of my counts) and then a full body PET scan. The PET scan revealed that I not only had lymphoma on my known neck area, but the lymph nodes in between the lobes of my lungs (the mediastinal nodes) were also affected. That put a stage label on my Hodgkin’s – stage II.
• My chemo plan was then revealed. I would get 12 treatments (or 6 cycles) of ABVD chemo, the traditional cocktail of choice for Hodgkin’s because it works. I would go in for treatment every other Monday. (This is all still the case, by the way.)
• I also had my second surgery - this time for my port. This surgery was sooo much better than the full biopsy as I was only under light anesthesia and not full - basically a very light nap. Also for those wondering, the port just simply looks like an extra bump under my skin, just 1-2 inches below my collarbone on the right side of my chest.
• I had chemo treatment #1 a few days before Christmas. (Happy Holidays to me!)

My gigantic folder of cancer and chemotherapy help guides.

• January
• Chemo treatment #2
• Chemo treatment #3
• Chemo treatment #4
• February
• Checkpoint PET Scan. I was feeling positive going into this (honestly I’ve stayed really positive through all of this) but realized the results could go either way. Luckily and thankfully, we got good news. All of my lymphoma tumors were responding and dying from the chemo. While there are still remnants to be sure, they were too small to be picked up by the PET scan. Basically - we’re winning! I just have to see this chemo through to the end to beat the cancer for good.
• Chemo treatment #5
• Chemo treatment #6 (Halfway done!)
• March
• Chemo treatment #7
• Chemo treatment #8 (scheduled)
• April
• Chemo treatment #9 (to be officially scheduled)
• Chemo treatment #10 (to be officially scheduled)
• May
• Chemo treatment #11 (to be officially scheduled)
• Chemo treatment #12 (to be officially scheduled)

Things to note:

• My form of Hodgkin Lymphoma is the nodular sclerosis type, which makes up most Hodgkin cases. Not that anyone wants cancer, but if you have it, this is the kind you want. Nodular Hodgkin’s has very high cure rates.
• I will not need radiation. There was a potential need for it if my tumors weren’t responding to chemotherapy, but with my recent good PET scan the need for radiation is gone.
• ABVD chemo gives all the normal stereotypical chemo side effects - tiredness/fatigue, weakened immune system, nausea, loss of appetite, hair loss, neuropathy of hands and feet.... I’ll probably talk about these fun side effects in another post, but I’ll go ahead and say now that for me they have been mostly manageable.
• Mostly, life is just adjusted normalcy. I’m still going to work (currently working two half-time jobs) but that’s about all I can do in a day. The week following a treatment is rough; the second week (what I call a recovery week) is better. In the evening after work, I’m basically just a couch potato. Even on recovery weeks, I really have to be careful to preserve my energy during the day if I have plans in the evening.
• I’m not running, biking, etc. like I was right up to my first biopsy, but I’m still finding ways to be outside or get in a “workout.” When the weather is nice and  I have the energy, I go for walks. I find this the best because it’s light exercise and I’m outside. When the weather isn’t so great, I’ll play some Wii or Wii Fit. Again, nothing that is normally a workout but it at least gets me moving. As the weather improves here in Minnesota, I might try some yoga or balance exercises out on our deck.
• Mostly, I’m doing just fine. Chemo sucks but so far it mostly just sucks for a few days. For the most part, I look the same and live the same. Most people that interact with me have no idea that I have cancer. Even those that do know, sometimes forget (Really, I’ve had multiple coworkers and friends remark on this.) I’m really just going along on my merry way. It is what it is. There is no use dwelling on it, so I just keep moving forward.

Ok, I think that about covers the basics. Please, if you have any questions, ask away in the comments, email me, or DM me on Twitter (once I get that linked up). I’m totally open about talking about any of this cancer stuff. I’m not one that’s shying away from it all. It is what it is and I just keep moving forward. Additionally, if any of this information can help someone in their own cancer battle or help people in general understand cancer better, I am all for it.