So, how’s it going after my 4th session of chemo? I actually have finished my 5th session, but I think there is a lot of important things in this post.
This may be a longer blog post than most because the two weeks after my 4th session were very eventful.
I had my PET and CT scan to show progress, as well as a meeting with my oncology team to go over said progress…and some other things happened that I can’t talk about until we get a resolution.
It was a busy two weeks, people!
Day 1 – Chemo
Nothing to report this time around. I will say that getting your port “flushed” is awful. So I have a medi-port (they call it some fancy name that I can’t remember right now…yes…my memory and my mood are different since starting chemo. They call it chemo brain. Sweet name. I call it chemo patience.) that essentially allows them to pump medicine right into my heart.
You have to wear a shirt that allows them access to the port. I chose an olive green button down by dockers and black sweat pants by NIKE, shoes were also by NIKE. Hair cut courtesy of Jamie Crowe Styling.
And by medicine I mean poison.
And by pump, I mean inject.
And by heart I mean the thing that keeps us alive…so they’re pumping poison directly into my heart…as opposed to my veins. It’s pretty…fucked up.
They have to “clear the line” after they access it (essentially they numb up the spot where the port is with lidocaine and then they LITERALLY ram a ¾” needle into my upper chest.) It doesn’t really hurt going in believe it or not.
When they clear the line they pump a saline solution in and then an anti-blood clot medicine after chemo is done. I can taste both of them and that taste makes me want to gag AND it sticks around in my mouth…or maybe the memory does for a few hours afterward. I can’t even explain the taste. And, you would think the saline solution wouldn’t taste that bad since it’s really just water and sodium…but it does.
Since we have gotten the drug order situated (as far as long lasting anti-nausea medicine) post-chemo on Thursday tends to go ok.
The one thing I did different this past time then the other times was that I had my last meal the night before and didn’t eat again until that night, so a 24 hour fast. I don’t think I’ll do that again. I usually fast for that long, but I think having something in my stomach BEFORE I go in for chemo is better then having nothing in my stomach at all.
Day 2, 3 and 4 (Friday, Saturday and Sunday)
All in all, Day 2 and Day 3 weren’t that bad. No puking this time! That’s a plus obviously.
Plus…no chemo hiccups! Well…almost none. I had them all day Sunday and just a little bit on Saturday and Monday. BUT! Nothing that kept me up all night like the last two times.
Me soaking up the rays. I think the sun gave me a rash. This was my no chemo hiccup salute.
What did I do? I took Prilosec starting on Wednesday.
However, I think the Prilosec did something to my digestion while I was on it and for a few days afterward. I was very bloated and noticed that my body didn’t handle food the same way. I’ll talk more about why/what I think was going on later.
Day 5, 6 and 7 (Monday, Tuesday and Wednesday)
These days have actually turned into the worst days for me now. It’s still not as bad as the first two times I went in for chemo though.
I attribute this to:
Anti-nausea meds running out.
I really push the water intake as much as I can to help my body get the chemo drugs out. This was NOT something I did very well after the 1st and 2nd treatments because I just couldn’t stomach the taste of water.
No workouts. But I did get a walk in with my good friend Chris on Wednesday.
Day 8 and 9 (Thursday and Friday)
Tuesday through Thursday were very stressful days for me. We had some things go down with the gym that required me to shift back into owner mode to deal with them. They are still ongoing and no, I don’t want to talk about them, but I will share them with you after we have a resolution.
Cancer rule #18 – just because you’re going through chemotherapy and fighting for your life – doesn’t mean your life stops.
10 day observation
I talk slow and think slow for about 10 days after chemo now. It’s very odd to explain.
Things are both clearer and easier to get my idea out and yet, difficult to keep up sometimes in conversations. There is a clarity in that I only focus on the point. Often times I find my self rambling….like a professor….or warrior wizard on things. Not even making a point, just talking. But, on those 10 slow days, I can’t talk to people that are fast talkers or fast thinkers for too long during the 10 slow days.
I can’t keep up.
But then usually on Day 9 to 11 it’s like a fog lifts and suddenly it’s like I just had 5 espressos sweetened with cocaine. Not that I know what that’s like or anything….
We all have energy that comes out of us that affects the people around us and our environment.
My energy is like a 3-4 on a scale of 10, where as normally I am a 7-9. I had to do some very heavy thinking and talking on Wednesday and Thursday. It was tough and it made me feel very vulnerable.
I cried a few times on those days because I felt so out of control and helpless in the whole situation.
Friday was my PET/CT scan to track how the cancer is responding to the chemo. Let me set the stage for you – no food or drink on Friday before PET/CT scan.
The PET scan shows activity, the CT scan shows size. Specifically the PET scan shows glucose uptake. Cancer cells are (supposedly) poor utilizers of any fuel source other then carbs. It’s called the Warburg effect. Essentially this guy (last name Warburg) figured out the cancer cells really only burn glucose. So the PET scan measures different glucose uptakes in the body.
They gave me the dye/glucose solution through my port…which of course means they had to to the flushing and anti-coagulation stuff. The dye helps the CT scan pick up the images of the tumor. Same idea as the PET scan, glucose uptake. See above – not a fan of it.
I actually think I am ONLY going to have them access my port for chemo from now on, the cleanse that happens just makes me too nauseous. Every thing else I will have them just give me an IV for.
I actually threw up my CT solution after the first swallow. I was just so nauseous. The port is essentially an IV line, so I had an IV line daggling on my chest the whole day, with no food (not eating by choice is ok, not eating because you can’t sucks) and a bunch of “medicine” (drugs) in my stomach. That is not a good combination for me.
I threw up in the cancer garden…I think it’s called the “Hope Garden” at DHMC. Well, I hope no one saw me.
No exercise for two days before the PET/CT scan. I had to ask for clarification on this because as you all know…exercise is important to me and usually my first work out days are Wednesday/Thursday/Friday.
Essentially, because the PET scan is measuring glucose uptake, and intense exercise burns glucose in the muscles, which then cause the body to replenish said glucose to the muscles. That might cause you to get a PET + result. That’s bad. That means the tumor is more metabolically active then the liver.
Basically, my oncology team and I agreed to keep my heart rate below 120. At that level, I really shouldn’t be burning any glucose, hence no need for my muscles to replenish it.
The results would take until Monday to get.
Day 10 and 11 (Saturday and Sunday)
Saturday was the first activity day I got in. We went to a bounce house someplace….I think in Nashua.
It was GREAT to finally move! If you have never got to a warehouse full of trampolines, you need to go at least once.
Day 12 (Monday)
Met with oncology team to go over results.
They use something called a Deauville Five point scale to assess glucose uptake in a tumor, 1-5. This is what the PET scan tells them. CT = size, PET = activity.
You want a 3 or less. That basically means that the tumor is taking up the same quantity/at the same glucose uptake level as the liver or below the level of the liver. A 4-5 is bad…that means the tumor is taking up MORE glucose then the liver. That means it’s still active. That means for me…a more aggressive form of chemo called BEACOPP.
More aggressive. How it can get more aggressive I don’t know, but going from 4 drugs/poisons to 7 is one way.
We want a PET -, the tumor is LESS metabolically active then the liver.
We got a PET-! That’s great news! I quote – no active lymphoma! That means we keep doing the same regimen and I don’t have to go to 7 drugs!
So, what happens after the PET/CT scan? Well I met with the oncology team to discuss options on Monday. We decided to stay the course. We still may have to do radiation, but that’s something we talk about later.
The team was very happy with the results, as it also meant I could stay in the trial. If I came back as a 4-5, as opposed to a 3, we would have gone to the BEACOPP option.
And I wasn’t going to do that, so that would have meant I was out of the trial.
I also got a great work out in at Baan Muay Thai! It was great to just step back and let someone else tell me what to do. I have never been a fan of getting hit, but damn I do like to hit a bag!
Day 13 (Tuesday)
Un-eventful, but I did get a work out in!
Day 14 (Wednesday) the day I am writing this
I CAN NOT EXPLAIN HOW GREAT IT FEELS TO KNOW THAT WHAT I AM GOING THROUGH IS WORKING AND WORTH IT.
However, I still have to go through another 4 months of treatment and then possibly radiation.
My mood has generally been better, although the short fuse is still there as Jamie pointed out to me yesterday at dinner.
But, some of the negative feelings I have toward chemo are gone. I am relieved now. This poison is doing its job.
We all have one, right? Do you want to know mine? Would you like to find out how a Warrior Wizard lives their life after being diagnosed with Cancer?