Four Months In One Post
It’s been a minute. That wasn’t intentional. We last left off at the end of March when I was getting ready for neck/throat radiation. When that started, I meant to blog about it. But that radiation really sucked, so I didn’t have the energy or desire to do much. And now all of a sudden it’s August. Oops. Let’s take a quick stroll down cancer treatment memory lane and then we’ll get to the PET results that determine if I live or die (only slight exaggeration).

Removing the Last Bit of Cancer
In December 2025 I had a few lymph nodes removed from my left armpit. That’s how we knew the cancer was metastatic. I then had a PET scan that showed there were no remaining cancerous lymph nodes, but there was this one little guy that was suspicious. Not big enough to definitively be cancer but the fact that it was there warranted further investigation. Just not right at this moment. The immediate priority was throat/neck surgery and then getting my thumb lopped off. After that we could look at my armpit again.

And when we looked at the suspicious lymph node that little bugger had grown, rather quickly, to a size that left no doubt. The surgery bus had left a cancerous lymph node behind. So on April 13th, Lindsey’s birthday no less, I had all of my left axillary (aka armpit) lymph nodes removed. Or as the doctor put it when I asked him how much he was going to cut out, “I’m going to clear the field”. Pretty sure that’s a medical term. He didn’t seem like the type of guy to use sports metaphors (iykyk).

Draining the Armpit Swamp
If the tissue in my armpit was the field, taking out all of the grass just left a swamp. Since lymph nodes help move your lymph fluid, not having them means fluid can build up. As part of the surgery they put a drain in my armpit to help remove this fluid while I healed. The doctor thought I’d have it in for 2 weeks. In true Rob fashion, I had it in for four. But that wasn’t the end of the swamp…

About two weeks later, my armpit felt “full”. It’s hard to describe the feeling, but when your arm rests at your side it’s a natural position and you don’t really notice. For me it felt like someone had rolled up a washcloth and put it in my armpit. My arm didn’t quite lie completely at my side.

So now that I had observed my armpit feeling different, wondered about the cause, and hypothesized I still had fluid in there, it was time to move on to the next step of the scientific process…experimentation.

Now I don’t recommend jabbing a needle into your armpit. This is a classic “do what I say, not what I do”. But ever since the surgery I had absolutely zero feeling in my armpit. Which meant I wouldn’t feel a thing if I stuck a needle in there. So I did. And wouldn’t you know it, I filled a 3 ml syringe with fluid. It was a very conclusive test with a clear result. The removal of all that tissue had resulted in a seroma (a local accumulation of serous fluid post surgery). So now the question became how much fluid was in there. So off to Amazon I went so I could improve my experimentation process.

I bought a 200ml syringe with tubing that is typically meant to orally feed a pet who is unable to eat solid food. I hooked everything up and jabbed the needle in once again. This time I pulled out 150ml of fluid! That’s a lot. Afterward a doctor friend told me, “There are a lot of nerves and big blood vessels in there. It’s impressive you didn’t hit anything”. To be honest I didn’t really think about that. So it was probably more divine guidance of my hand than any impressive skills I have.

In the beginning of May I had a 2nd drain placed in my armpit. After 7 rounds of sclerotherapy (drugs shot into your armpit to reduce the seroma) I was declared healed. But much like the cat, the seroma came back. Much slower this time though. I actually still have it right now and we’re figuring out what to do next.

Throat/Neck Radiation (Finally)
Ok, back to the radiation. The throat/neck radiation began on April 2nd. I would get radiation every weekday for 6 weeks. The only day I got “off” was the day of my armpit surgery. Neck radiation is not for the faint of heart.

It’s hard to convey what it is like, but this photo paints a pretty good picture. This isn’t a weird tan line. It’s the radiation burning my skin. There is a very clear difference between the pasty white and red/pink. And here is the thing to realize. The inside of my throat would be the same. Radiation burns all the way through. So if you have a “sunburn” on the outside, then you have a sunburn on the inside too. The way I would describe it is it’s like I swished some boiling hot water in my mouth and then swallowed it.

The first week actually wasn’t bad, but then again the effects of radiation are cumulative. With chemo it’s like someone beats you to within an inch of your life and then stops so you can heal. With radiation it’s like getting a smaller beating every day. There is no healing. There is just beating.

The second week my taste started to go. By the third week I couldn’t swallow certain foods. Week 3 is also when the fatigue started to creep in and that redness on my neck really showed. At first it was afternoon naps. And by week four it was full on sleeping during the day and still being able to go to bed at night.

Week 5 was when it got really bad. I was tired. I couldn’t taste a damn thing. Seriously. I could have licked a pickle and then licked a turd and aside from texture, I wouldn’t have been able to tell the difference. And with my throat being sore all the time it was really hard to make myself eat.

And then for week 6 I was basically done. Not like done with radiation. There were still 5 more days to go. I mean just plain done. I couldn’t eat. I slept all the time. And I didn’t feel like doing anything anyway. I told Lindsey that if this wasn’t my last week, I’d would have needed a feeding tube to continue. It was that bad. And then on May 13th I was done with throat/neck radiation. I promptly slept for the next 3 days. I think my body was holding out just long enough to finish and then peaced out for a while.

Armpit Radiation
With neck/throat radiation ending on May 13th, it was time to move on to my armpit. Except you might remember that pesky second drain I had to get. At this point it was still in my armpit. It wasn’t an issue for Neck/Throat radiation but Radiation Oncology wanted it out before we could begin the next round of radiation.

So thus began a little dance of “Rob needs to start radiation” and “Rob still has the drain tube in”. And of course, as often happens in medicine, starting radiation was the purview of Radiation Oncology (RadOnc) and the drain removal belonged to Interventional Radiology (IR); and while they share Radiology in their name, I found out they don’t share much else.

So RadOnc was on me to get the drain out and IR’s urgency was the medical equivalent of driving Miss Daisy. “This stuff can take awhile. It will be weeks or months” I was told. Well hey Mr. Resident, I don’t have weeks or months. If we don’t start radiation with a certain time period we risk any remaining cancer spreading outside of the radiated area. Which kind of defeats the whole purpose of radiation in the first place.

I might have gotten a little heated. But then again being a little hot is much better than being at ground temperature for all of eternity. So I finally got an Attending in IR who understood the stakes and actually picked up a phone (gasp) to talk to RadOnc and come up with a plan. So big shout out to Dr. Krosin. I expressed concerns to the resident and the resident told me why they weren’t actually concerns. I expressed those same things to Dr. Krosin and he listened, understood my case was different, and then took action. That’s what we need more of in this assembly line we call the American health system.

Short story long, I started radiation with the drain in place. Not ideal, but necessary due to the amount of time that had passed since surgery. Armpit radiation was not nearly as bad as throat/neck. Kinda like getting shot by a BB instead of a hollow point bullet. Ok, maybe a little worse than a BB, but still nowhere near throat/neck.

Dear IU Health, It’s You Not Me
I’ve been going to IU Health since 2003. Having worked there at the time, it just made sense. It was a committed monogamous healthcare relationship, or so I thought. But much like the old gray mare, IU Health is not what she used to be. There were hints here and there but it became very apparent when not once, but twice I went to see my Oncologist with very specific questions I had sent in advance. And both times he entered the exam room with nary an idea why I was there. I mean, dude. Look in the freaking chart before you enter the room.

So after a quick scan of the bible and not finding anything about one man and one healthcare system, I made a call to Community Health Network for a 2nd opinion. The experience I had at Community was night and day to IU Health. You don’t have to drive downtown. You don’t have to pay for parking. And perhaps most importantly, every single person we (Lindsey was of course with me) encountered already knew a lot about me because they had actually read my freaking chart.

If Cancer Doesn’t Kill You, IU Health Might
This whole time the plan from my IU Health Oncologist has been for me to get Cemiplimab infusions after radiation. Cemiplimab is an immunotherapy that super charges your immune system. Except the immune system in my body isn’t mine. It’s the immune system of my stem cell donor. And the doctors at Community were quite surprised that Cemiplimab had been recommended to me. You see there is a scenario where the Cemiplimab causes the donor T-cells to become so powerful and plentiful that they don’t just stick to killing the cancer cells. They will attack my healthy cells as well. Including my internal organs. And if that started to happen I’d be taken off the Cemiplimab and given high dose steroids to calm down the T-cells. But that isn’t guaranteed to work. The T-cells may be so powerful and plentiful at this point that there is no stopping them. My organs would shut down. The fat lady would sing and the last 6 months of getting rid of the cancer would be for naught.

A Better Plan
The Community Oncology team (which is also affiliated with MD Anderson) had what I think is a better plan. Being done with all the treatments that should have removed the cancer from my body, they said we should do a PET scan first and see what is there. If there is no cancer, then there is no reason to start the Cemiplimab train down the tracks. If however there still is cancer then it’s a much deeper discussion on treatment options and the risk (death) vs. reward (remission) of each. It seemed like a much better plan to us, so we transferred my care to Community and left IU Health behind.

PET & Results
And we are finally to the most important part of this whole story. The PET scan is what would tell us if the months of body beatings were worth it. If the PET comes back clear, then treatments are done and we move to surveillance. And if it’s not clear, well that wouldn’t be a good thing.

But before we get to the results, let’s chat about the PET itself. A PET scan is really a Positron Emission Tomography scan. It’s just that all of that won’t fit on the sign by the door so they shorten it to PET. And this whole process works by injecting a radiopharmaceutical into your blood. You might be thinking AM/FM here but radiopharmaceutical is just a nice way of saying radioactive drugs.

And the really funny part is the syringe is stored in a thick container made of lead. You know, so the radiation doesn’t leak out and hurt anyone before they inject it into your veins. The next time a nurse asks me if I use any recreational drugs, I’m going to say no but I like to dabble in radioactive drugs every now and then.

The Moment You’ve Been Waiting For
Which finally brings me to the results…which are that I have no active signs of cancer in my body. We freaking did it!

This all started in December and along the way I’ve lost a lot of lymph nodes, part of my tongue and one thumb. I’ve had radiation shot at me from all angles, been unable to eat adequately (down 30-ish pounds), and have had multiple surgeries. But here’s the thing. Much like cats always land on their feet, Rob always comes out on top when cancer tries to pick a fight. So we are 4 rounds of cancer into this match now and I’ve won each and every one.

And FYI cancer, if you try to come back for a 5th round I’ll just kick your ***** ass again. You’re officially my bitch now.