Cancer Bro

39 needles later...

Mon, 24 Sep 2012 18:03:08 -0400

I debated on the title of this post. I played around with “This blog is about to get really boring” and “Ryan - 1, Cancer - 0” to name a few, but I decided to go with “39 needles later.”

Early on I thought I might try to count how many needles I was getting during treatment. Between all the tests, blood-lettings (drawing blood), surgeries, chemo, messed up IV’s, etc. I racked up a lot of needles this past year. In truth, I lost count but 39 sounds like a fair number. Could have been more, could have been less.

I got two more this morning.

I suppose these last two have been the best. That messed up IV needle ended up telling me I had stage 3a lung cancer, and these last two told me I didn’t. I had two test today, a blood test and a CT scan (w/ contrast), both of which came back clear telling me that I’m cancer free and don’t need any more treatment. It sounds too good to be true, and almost weird to think or say… but I never really felt 100% comfortable with the idea that I had cancer to begin with.

So, as you can probably tell, I’m happy to say that this blog will get a lot more boring moving forward. I don’t have any plans to post for a while, but will be happy to continue to email with anyone who finds this.

I’ve had so many people support me in a number of ways, and literally thousands of people read this blog so I have this overwhelming desire to say something monumental in what hopefully is my last post ever… but I don’t :)

“Thanks” is all I can say. Thanks for the notes, thanks for the meals, thanks for taking care of my family, and thanks for the prayers. None of it was lost or wasted, all of it helped and continues to help. I hope I in turn don’t waste anything that I’ve learned through this process. Early on I read an article by John Piper called “Don’t Waste Your Cancer” and my hope is I haven’t wasted it all.

…

What’s next? I go back for another scan in 4 months. I had someone tell me today that not seeing them again for more than 2 months was good, so 4 months was great. I’m hopeful that I continue to have uneventful scans from here on out, but if I don’t and cancer wants a rematch then I know I have a ton of people out there helping me.

- Ryan

Hanging out in between “meetings” at Emory right...

Mon, 24 Sep 2012 10:17:02 -0400

Hanging out in between “meetings” at Emory right now. I guess I’ll find out how things are really going in a little while. This blog is either going to get very (more) boring or very (more) depressing :)

My Cancer Anthem

Tue, 07 Aug 2012 09:50:00 -0400

I had several people tell me I needed a “Cancer Anthem”… and by “several people” I mean no one, I just thought of it myself*.

I found that this song (below) started playing in my head towards the end of radiation (while laying on the table), the lyrics seem appropriate. When I match back the lyrics to what I was thinking at the time this song is now in my memories of surgery and chemo, and even the first few weeks of diagnoses. It’s strange how memories work.

They are playing this song a lot now so many people will hate it, but for better or worse it’s now part of my cancer memory.

Check out the lyrics. If you don’t know why this fits then I’d be happy to discuss…

I feel so close to you right now, it’s a force field
I wear my heart upon my sleeve, like a big deal
Your love pours down on me, surrounds me like a waterfall
And there’s no stopping us right now
I feel so close to you right now

[Calvin Harris - Feel So Close]

There are official music video versions of this song on YouTube but I wanted one without the video. I’ve only seen parts of the official video and it doesn’t fit with my version of the song, just the lyrics.

*I decided to Google “Cancer Anthem” and found a lot of people posting stuff like this.

Back to normal?

Wed, 01 Aug 2012 12:05:28 -0400

First let me apologize for the long blogging hiatus. I have an excuse this time since nothing is really happening. It’s been 5 weeks since I ended radiation and I feel like I’m almost back to normal*. Towards the end of radiation I was exhausted and I was told that could last up to two weeks after the final dose. It ended up taking about a week and a half till I was able to do a lot of physical activities (sports, exercise, light saber duels). The only residual effect from radiation is a cough from inflamed tissue. Dr. Ram said some people have had this up to 9 months after.

So what’s next? I saw Dr. Ram on July 23rd and expected him to schedule the next PET scan to see if all the treatment is working. Dr. Ram said it would be better to wait and decided to push it out two months. So my PET scan is scheduled for Sept 24th, and I see Dr. Ram again the following week (10/1) for the results.

Dr. Ram basically said he wanted me to get back to my normal life. The goal is to get back to normal and not have to come in for treatments ever again. There is no guarantee that things have worked or that I’ll continue to be disease free, but for now there is no reason to think that it won’t. On the other hand in some ways it feels like a waiting game till the next scan. I just have to keep remembering that it’s not a waiting game, it’s a “things are awesome right now, or slightly less than awesome right now” game.

*I feel pretty good physically right now but can tell I’m not back up to 100%. A friend told me that you can get back up to 90% pretty quickly but that it could take months to get back to 100%.

Radiation 30 of 30

Wed, 27 Jun 2012 20:59:00 -0400

I finished my last dose of radiation this morning and everything seems to be going well. I am pretty tired, especially this past week, too tired to blog as much as I’d like. I’m told I’ll be back to normal in about 2 weeks, and I’m looking forward to progressively feeling better in the next few days. Radiation has definitely been the easiest for me of the three stages of treatment (chemo, surgery, radiation).

The radiation techs said “congratulations” this morning for being finished. I guess that’s what you say. Seems weird since I didn’t do anything but lay on a table every morning, but I’ll take it. I’m glad to not have to wake up quite as early tomorrow and make my way over to Emory.

Next steps? I see Dr. Ram towards the end of July where he should schedule my next PET scan. I guess that scan will tell me if we can finally get back to a more normal life, at least for a few months (until the next scan), or if I get to repeat everything I’ve done in the last 7 months.

I’ll also see Dr. Higgins again in 6 weeks for a check up but I expect that to be uneventful. I think it’s routine to get checked to see if there are any issues from side effects of radiation, but since I don’t have many now I don’t expect to have any in 6 weeks.

Look up the word “compassion”. My guess is that they...

Wed, 20 Jun 2012 09:23:17 -0400

Look up the word “compassion”. My guess is that they meant for this to be on the sign to say “we have compassion for what you are going through”. However, I’ve found it to mean that they are giving you compassion. Almost like you are getting a little with each dose.

The table with handle bars. It looks less weird when they put a...

Wed, 20 Jun 2012 09:15:09 -0400

The table with handle bars. It looks less weird when they put a sheet over it.. slightly less weird.

Radiation 20 of 30

Tue, 12 Jun 2012 10:30:00 -0400

I’m now 2/3 of the way through radiation and seem to be doing well. I, of course, don’t have a baseline from which to judge. However, being around other people going through radiation and Dr. Higgins telling me that my side effects are mild tell me that I’m getting off fairly easy for now.

So far the biggest issue is fatigue. I seem to be getting more and more tired, which was supposed to happen and should continue to increase as I get closer to 30 of 30. It’s not that bad, but by 2pm in the afternoon I’m starting to yawn and have to re-caffeinate.

No burns yet, just some irritation in the throat/chest area. This irritation started causing acid reflux around 10 of 30 and got to be pretty painful each meal. I tried Zantac for a while and it helped but started taking Prevacid this weekend and that has taken care of the problem almost 100%.

Pictured: The head of the TrueBeam. These (lead, I think) bars reconfigure themselves to shape the radiation beam. This is what one of the four hits I get looks like (it has an inverted twin that gets me from the back). Some times when I come in and lay on the table I see the configuration from the last person. Once I saw almost all the lead bars open in a trapezoid shape, telling me that the person before me got a huge dose.

P.S. Going to radiation every day means extra driving time and extra waiting room time, especially on the days (each Monday) that I have to see the doctor. I’ve now churned through several audiobooks that I highly enjoyed; The Lords of Discipline, All 3 The Hunger Games books, and Tim Keller’s The Reason for God

Just a short video to give perspective of the door that shuts...

Thu, 31 May 2012 08:25:00 -0400

Just a short video to give perspective of the door that shuts you in the radiation room. I didn’t even realize how thick it was till I watched the video. Oh, and Kevin (one of the techs) makes a guess appearance. The humming sound is the door moving… the muzak that you hear at the end is what is playing in the room the entire time.

Radiation 8 of 30

Thu, 24 May 2012 13:10:09 -0400

I’ve been curious how radiation would effect me and thought I would share my findings for those who might come across this blog in their research before they begin their own treatment.

I’ve now had 8 doses of 30 in my radiation treatment regiment. So far so good, but I started to feel the beginning of uncomfortableness last night. So, I suppose it took 7 doses before I realized something was different. It’s just a subtle change but not painful or burned or anything like that yet, just sort of an irritation.

I think some fatigue is also setting in which I didn’t expect to come this early. Fatigue is the #1 side-effect, then “burns” (sunburn like irritation on your skin), then coughing and the list goes on from there. I see the doctor once a week to check on me as far as my tolerance goes and she mentioned that I could already be experiencing fatigue after just a few doses but probably won’t really get the sunburn till later weeks. I do have a cough but it’s difficult to tell when my surgery cough* stops and my radiation cough starts.

As a bonus, I’m including a picture of the ceiling tile that is in the radiation room. This is what I get to look at every morning when I lay down on the table. Very calming, right? It’s like someone is saying “hey, it makes sense that you would be getting a sunburn in a tropical paradise like this.”

Pictured: “Tropical paradise”, the sub-basement of the Winship Cancer Center in TEC1 room behind an automatic lead door that seals you in while protecting others :)

*I developed a cough after surgery that is apparently a common side-effect. It comes from inflamed tissue and eventually goes away. It was almost gone but now I think radiation cough is taking it’s place.

Shots from my original PET scan showing the “Golf...

Thu, 17 May 2012 22:02:05 -0400

Shots from my original PET scan showing the “Golf Ball” in the area of my lung that was formerly my upper right lobe.

Radiation, first dose

Tue, 15 May 2012 17:30:17 -0400

Today I got my first does of radiation, but I don’t feel any different. It really doesn’t feel like anything and I’m not supposed to notice side-effects for several weeks. Sort of like when you are out in the sun and don’t realize you’ve gotten too much till it’s too late. Over time I’ll just start to feel a sunburn-like sensation and fatigue.

It was a pretty quick process today and will be even quicker each day starting tomorrow. I got the 7:30am time slot so will be at Emory every weekday morning for a while at 7:30am. If anyone is in the area and wants to get coffee then let me know :)

Below are two shots of the TrueBeam. This is the most impressive machine I’ve seen so far. I just lay down on a table and this machine circles me sending beams in both from my front and back. There are a lot of green lasers going on the whole time and the massive machine moves silently.

No Ink

Mon, 07 May 2012 15:11:17 -0400

I had my pre-radiation therapy appointment today. Was a quick (about an hour) trip in to have some marks put on me and a CT scan so that everything can be aligned when I start radiation next week. My first dose of radiation will be next Tues 5/15 instead of next Mon because all the time slots were full. During my first visit I’ll set up a schedule for when I go in every day.

Two things didn’t happen today that are probably a good thing but that sort of disappointed me in a small way.

One, I didn’t get a mold (or mask) made. For some patients they make a mold (see picture below) that you have to wear each time to ensure you stay in the same position each round.

The second thing… no tattoos. In some facilities people are given actual permanent tattoos to mark the points of entry for the radiation. This is another alignment tactic to make sure you are lined up in the correct spot every time. The tattoos are normally very small but are permanent just like any other tattoo. What I got instead was a sharpie and tape. Who knew that you could just use a marker and clear tape to accomplish the same thing?

Pictured: Creepy masks and wide shot of CT machine

Radiation 101

Wed, 02 May 2012 09:00:00 -0400

I met with Dr. Higgins (Radiation Oncologist) yesterday and found out a little more about the radiation plan. I’m sure I’ll learn more as time goes on about how it all actually works but I did pick up some nuggets of information.

I’ll go in to radiation every weekday starting 5/14 for 6 weeks. The first session takes a while, but each session after will take about 20 minutes. During the 20 minutes each day they are basically giving me 1/30th of the prescribed dose of radiation. In my case it’s 54 Gy (Gray) for a few areas in the mediastinum and 60 Gy for the area near the lymph node that was positive in the mediastinum.

A Gray… you know… a joule absorbed per kilogram of matter. Everyone knows that, right? Well that’s how Dr. Higgins said it at first then realized that I might not know what a Gray was so quickly said “a joule per kilogram of absorption”, just to clear things up. Luckily all the C’s I made in physics classes along the way helped me to keep up, but I was confused when I first heard the dosage. It’s basically the amount of radiation (energy) absorbed in the area (for those that didn’t C physics).

I go in next Monday (5/7) to get my initial scan, marks and possibly a mold(?) in order to create the targeting plan (again, not sure if that is what it is called). Essentially they have to target the spots they want to hit. So they have to do a lot of marking and calculations up front to make sure they hit those same spots all 30 times. The idea, as I understand it, is that they hit the cancer area 30 times giving them the full 54-60 Gy but change the point of entry for the beam. That way the tissue between the cancer and the beam doesn’t get the full amount. The could just hit you once with 54 Gy in the chest… but I think that would be like getting a laser blast from Megatron.

Scene from The Transformers: The Movie. Some would say Orson Welles’ greatest work

"Technically Disease Free"

Mon, 23 Apr 2012 12:56:17 -0400

-“You’re technically disease free” said Dr. Ramalingam.

I’m going to implore a plot device, in medias res, where I step away from the climatic point of our story and go back and tell “How we got here”.

You may remember from last week’s surgery that Dr. Force found more cancer than was expected when he went in to operate. Force actually made a game time decision not to take the whole lung based on what he found, but to only take the upper lobe so that I would at least be strong enough for whatever treatment lay ahead. That thought is actually scary in hindsight, that I might have so easily lost my whole lung. Either way what happened during surgery is Force removed 5 additional lymph nodes (in addition to the one that was known to have had cancer prior to chemo). 4 of the 5 nodes had cancer. That wasn’t even a huge issue, what was a huge issue is that one of those four nodes was in the mediastinum (see picture below). Basically that makes that particular node a N2 instead of an N1 (in cancer staging terms) meaning that a positive node in that area is much more likely to spread.

Pictured: Dr. Ram and his drawring. A positive node on the main airway, outside of the lung is bad news.

The good news? Well, Force removed all of these nodes so technically I don’t have any cancer. It’s not great that the N2 node was positive, but since it is on the same side as the original tumor it didn’t change my staging. I was afraid I could come in today and they would tell me it was stage 4 but it’s still stage 3A. Dr. Ram also explained that this outcome was within the parameters of what he expected/planned for (my words not his). It wasn’t the best case scenario of everything that could have happened post-chemo but it is much better than it could have been.

The next step is indeed radiation. There may have been a small chance I could have been completely done, but since some cancer was found I’ll definitely have radiation. The great news is that at this point in time I don’t need chemo only radiation. Radiation could be it and then I’ll be done completely. I have an appointment a week from tomorrow with Dr. Higgins to find out when radiation may start. As I mentioned before, it will probably be every week day for 4 - 6 weeks.

Bonus picture:

Pictured: Book of Cancers. This was going to be the main photo if I got bad news. I was prepared for the post title to be “Stage 4”… really glad that didn’t happen.

Back at Home

Fri, 20 Apr 2012 10:29:00 -0400

I got back home yesterday shortly after noon. This has been a much quicker recovery than I expected. I might have even been able to come home Wednesday if the surgery hadn’t been delayed so long on Monday.

While I was in the hospital I had a ton of tubes in me for various reasons, but only had them in for less than 30 hours. De-tubing was one of the most painful of the experiences I had this week. After the tubes came out the rest of my time at Emory was about mobility and pain management. Without an epidural I had to rely on some meds through the IV and Percocet. Percocet helps, but isn’t the awesome experience some of you are thinking. For me it is only a little better than Excedrin so it’s helped but I’m almost fine without using any. Losing the epidural did help with keeping my blood pressure normal which meant I was a lot more steady on my feet. That along with the fact that I no longer had a bunch of tubes tethering me to various devices allowed my mobility to return to normal. Thur morning I was pretty much back to normal activity as long as I didn’t stay up for long.

My entire upper right lobe was removed during the surgery but I, to my surprise, haven’t felt a difference in my breathing. I did find out that Dr. Force said he saw that the lobe was already shriveled when he went in. I haven’t talked with him about how much capacity I’ve lost (I will during the follow up in a few weeks) but I assume I slowly lost that capacity over the last few months. I suppose my body had already adjusted to the decreased function.

Today I felt good enough to go without any pain killers, but Dr. Julie insisted that I stay on the Percocet a little longer and not try to be a hero. She is right, of course, but I do like the idea of trying to get back to normal as soon as possible.

No real updates on what was found during the surgery yet, but I already have some next steps lined up. I meet with Dr. Ram Monday morning where I should get the information from the full pathology report and some plan of action. I also meet with Dr. Higgins a week from Tues which tells me that they (the brain trust) have already decided that radiation will be part of the mix. I guess at this point in time it’s just a question of radiation and chemo, or just radiation.

While I was on the epidural Tues it caused lower blood pressure...

Fri, 20 Apr 2012 09:54:35 -0400

While I was on the epidural Tues it caused lower blood pressure so I was deemed a “Fall Risk”. Apparently the wing I was staying in had a great “no falls” record so they were intent on keeping it intact. They put this bracelet on me and set an alarm on my bed that would go off if I tried to get out of it without their assistance. I didn’t end up falling, but did end up wearing this bracelet till I got home.

Cancer is as cancer does

Tue, 17 Apr 2012 12:38:00 -0400

I’m finally back online after being disconnected for almost a full 24 hours. I know, I know it sounds horrible and I wouldn’t wish it even on my worst enemy but I know there were many of you out there praying for me. Both the iPhone and I are back together again and are recovering nicely.

I also had surgery yesterday.

The surgery itself went well, but the waiting was brutal. We waited almost 10 hours after our scheduled surgery time to actually go back to the OR. I was the last patient in pre-op and at one point in time had to be moved because the area in which I was being held shut down. Every few hours we were told “just one more hour” but it never came. I finally got in around 8pm and wasn’t done till after midnight. It was a very long day for Julie and I on top of everything else.

The good news is that the surgery went well and was all done laparoscopically so my hospital stay and recovery time will be a lot less. I’m already starting to feel better and may get to go home Thursday or Friday. I’m no fan of the incentive spirometer but breathing into it is helping my lung to recover and will get me out of here faster.

The upper right lobe was removed along with some lymph nodes in surrounding areas. I only have 3 small incisions and haven’t noticed any significant change in my breathing.

The less than good news, Dr. Force found more cancer. There was some microscopic cancer in one of the lymph nodes that hadn’t shown up before. This means that the chemo didn’t stop it, at least not this particular node. Dr. Force has suggested that maybe more chemo is needed, but Dr. Ram will make the decision on that. Later today Dr. Force, Dr. Ram and Dr. Higgins (Radiation) will meet to discuss next steps for me, although nothing will be finalized till probably next week after the pathology report (of the tumor that was removed) comes back.

I’m in good spirits despite the “less than good news”. I’ve had a phrase stuck in my head before I went under, when I woke up, and today… “God is good all the time.”

Waiting out a 3 hour delay. Won’t be game time till about...

Mon, 16 Apr 2012 17:59:46 -0400

Waiting out a 3 hour delay. Won’t be game time till about 1pm.

UPDATE: Still waiting… should be any minute now, but it will be close to a 9 hour delay once I finally get to the OR.

The scary envelope they give you during pre-op. I get to figure...

Thu, 12 Apr 2012 11:45:31 -0400

The scary envelope they give you during pre-op. I get to figure out how I want things to go down in all the bad scenarios.

If you were wondering, yes I did check the box for the RoboCop Program.