Chemo Day One

Ahoy Mateys! My crew is growing! From Quartermaster Crystal to Boatswain Kenneth and SwashBuckler Stef it seems I will have a full complement soon… love it! raise the black flag!

Yesterday was Day One of chemo.

First things first, had to get the port installed. That was done by the Interventional Radiology team so they could use x-rays to guide the placement and ensure the catheter ended near my heart. They also did my biopsy back on Sept 8th and when I showed up yesterday morning the same nurse who prepped me for my biopsy met us at the door and remembered us! (not sure if that’s good or bad) She was very sweet for the biopsy, pretty sure she gave me a little extra fentanyl and earlier than normal, good stuff. I don’t remember anything from the biopsy after she gave it to me, apparently drilling into bone is pretty painful so she knocked me out good. I can remember most of the port install though, they numbed the site so no pain but I could feel them stick a few fingers into the cut they made and hollow out a pocket for the port. Very weird feeling having someone tug on the skin of your chest from the inside. I could also feel them snaking the tubing up towards my neck.

Took about an hour and a half for the install and then I was able to get up on my own and walk into the next room, but the nurse ordered me into a wheel chair. Before I left I saw the screen that showed the placement x-ray. The tubing goes up to my neck, into my jugular vein, and then follows that all the way down to my right subclavian artery. They didn’t let me have my phone in there or I would have snapped a pic, pretty cool.

The nurse wheeled me out to find Crystal and then we headed over to the infusion center. Step one was finding a spot, they first pointed us to a smaller section of the room that had a U-shaped row of about 8 recliners with most of them occupied with someone getting an infusion. They pointed me to the chair at the turn of the U and I sat down, but immediately felt anxious. The recliners were set pretty close together and with everyone facing in I felt like I was tightly surrounded by people and beeping chemo pump machines. The look on Crystal’s face said she felt claustrophobic too but we didn’t know the protocol if we had assigned seats or what. I noticed another part of the room just had chairs along one wall and while the chairs were the same distance apart is just felt airier without people staring at each other. I asked the nurse if I was allowed to sit somewhere else and the look I got clearly meant that wasn’t asked often. Average age in there was about 65 so maybe the other patients just don’t care or put up a fuss? I decided if I was going to spend 6 hours there I’m not going to be timid so I just got up and walked over to another chair in the other part of the room. So much better! Crystal could pull up a chair in front of me and I only had a neighbor on one side. A nice looking lady of about 60 or so who had her daughter there who was typing away on a computer and a big Chemo “go bag” with lots of magazines and newspapers and the like. She just looked like it wasn’t her first rodeo and was awake and smiling unlike most of the snoring people in the other chairs. Good neighbor to have.

The nurse came over and gave us the rundown of what was going to happen with a list of the drugs and what doses I was to get based on my height and weight. First was the Rituxan (Rituximab), the one that takes the longest to get, about 5 hours. It is not technically a chemotherapy drug but a monoclonal antibody they developed from combining mouse antibodies that target a certain part of the B-cell and bind to it with human antibodies that then call in the immune system to destroy the cell. The mouse part however can appear as foreign to humans and cause reactions so it has to be given extremely slowly, hence the 5 hour infusion time even though its just a little bag of fluid.

About an hour into it I started feeling really tired and sluggish. I had to really concentrate to have clear thoughts and talk to Crystal and kept wanting to close my eyes. I decided (stubbornly) not to tell anyone about this though Crystal clearly noticed it. Then at about 1.5 hours I felt like my throat was tight and it was getting less and less comfortable to swallow. At that point Crystal called the nurse over and they said I was reacting and stopped the infusion, called my Oncologist and gave me a push of Zantac through my IV to stop the reaction. My head cleared quickly but I was pretty irritated we stopped the infusion, if I need the stuff then give it to me dammit! I guess I was just worried I couldn’t get it at all if I reacted and I knew this was probably the most important of the drugs I was getting.

Turns out they just needed to let my body clear for 15 minutes or so and then start again slowly. I later had a sudden rush of heat that started in my head and then went down my whole body. I didn’t say anything but Crystal asked what was up when I took off my blanket and rolled up my pants to cool off. It cleared on its own but the nurse (and Crystal) were annoyed I didn’t say anything. Hey, I just want this done with… I can’t get all bent out of shape from a little sweat. Crystal explained that since it is dumping directly into my heart a reaction can go from slight heat to full on bad news quickly. OK, OK. That’s why she’s there, I can be stubborn and she can keep me alive. The system works well.

Once that was done I got two other drugs via big ass syringes, pushed directly into my tubing over a 5 minute period each. The weird part was since they are vesicants (causing tissue damage in blister form. Fun Fact: Know what else are vesicants? Mustard chemical warfare agents! Crystal and I know all about that stuff, my teams found a few old war rounds full of mustard on my second trip to Afghanistan, bad day, takes a lot of explosives to make sure you incinerate it all. Crystal had to deal with some in Iraq. (5 to 1 explosive to agent weight ratio just in case you come across mustard some day)) she had to periodically make sure the vein was still accessed properly by pulling back on the syringe to pull some blood into the tubing. If blood doesn’t come up that means something might have broken and the drug could be pooling somewhere in my body causing big problems. So I had the fun of watching her pull back on the syringe and seeing my own blood come up the tubing then pushed back into my body… odd.

One of the drugs was a dark red color and she said my urine would turn red for a while, also weird, though I’d say it’s more the color of grapefruit juice.

(That was the look of me processing that I was going to pee red)

Last was the Cyclophosphamide, given through a drip over about 30 minutes. I didn’t feel any side effects from any of the pushes or the last drip. I was done at 5 o’clock and felt just fine, though a little tired. We made my next chemo appointment for 0900 on the 22nd and went home.

I was feeling pretty good about the whole business, we ate a pizza and watched some How I Met Your Mother (watching from the beginning on Netflix, we’re on Season 6, great show!) on the couch. I had a little pain around the port area and swallowing felt like it tensed the muscle right under my neck incision which doesn’t feel awesome but as a whole not too bad! Smooth sailing indeed!

…Until about 715 or so when I started feeling really warm and nauseous. Then it got worse. Crystal said I should try not to vomit since that would dehydrate me and make it worse. oh man nothing more fun than trying to hold vomit in when your body is screaming for you to go find a toilet. awful.

We turned down the AC temp and she sat on the floor with me in front of the vent, my forehead was dripping sweat and I was shaking, taking long slow deep breaths to try and keep my pizza down. Just trying to take some anti-nausea medicine was really, really hard. I couldn’t believe how quickly that went downhill. Google said that was normal, most people feel fine for the first few hours then between 4-6 hours after chemo it starts to hit you.

About eight I just wanted to try and sleep. Made it up stairs and into bed without losing it and pretty quickly fell asleep. That was a great decision. Slept through most of the night but woke up at 4 or so with some bad knee pain. Crystal got me my pain meds and I slept till 9.

Feel much better today, a little foggy in the brain and a little icky in the stomach but very manageable. Would be too much to ask for to be over the worst of it but here’s hoping.

Helps that I have Crystal and Boomer to keep me company!

Thanks for all the comments and I will keep you updated!

I’m shoving off! Weather is beautiful and the winds are fair. Till next time you scurvy dogs!

Cap’n Carter