Hello from infusion week 19! I am currently typing this from the infusion clinic and am about halfway done with my infusions for the day. They just started the Oxaliplatin which runs for about 2 hours, so I’ve got some time to type something up before I start feeling really crummy.
Let’s talk about what a typical infusion day looks like. It starts with Kelly and I rushing around the house to make sure we have everything ready and squared away for all of our super helpful family to have smooth sailing when it comes to dropping the girls off at daycare/school/camps/etc. For me it looks like taking my last shower for a few days because I can’t shower when I have my take-home chemo, or when I have my Neulasta on-body injector. So, if you encounter me a couple days from now, I apologize for the smell…
After the shower I scramble to pack my backpack for the day with my essentials. The few things I can’t forget are:
My sandals so that I can take off my shoes while I’m here, but also don’t have to put them back on every time I go to the bathroom (which is a lot, they give me a ton of fluids).
My iPad for general entertainment purposes
Headphones
A book
My glasses to read said book
A container of Altoids. Honestly if i forgot all the other things and had this tin of mints I would be ok. But without them I would struggle big time.
Why is this little container of mints so important? It’s because of the pre-meds. Before we really start each infusion I get a host of pre-medications to combat the side effects of the actual chemo. One of the premeds is a called Cinvanti. It’s a cloudy white substance that goes through my port line. You can watch it travel up the tubing and into my chest, and as soon as it hits there is an immediate horrid taste. I mean this stuff is straight up nasty. And depending on how merciful the nurse is they may give you a warning before they shoot it in, they may push it slowly or fast (I’m not sure which is better at this point). This is where the mints come in. I generally throw back a couple and hold them in my mouth until the taste of the drug is overwhelming and then I break the mint with my teeth as if that will somehow mask my pain.
Okay, Cinvanti rant over… but could they not somehow engineer this stuff to taste pleasant? Make it like a fluoride treatment and let me pick the flavor beforehand. I choose…. Bubblegum!
So once our bags are packed and the girls are all set for the day we hit the road to one of UM’s offsite clinics for infusion. I generally prefer this to getting infusions at the actual Cancer Center in Ann Arbor. It’s generally less crowded and moves along nicer. Sometimes at the Cancer Center they’re so busy that you wait an extra long time to get to the actual infusion chair. I have had it where I didn’t get called back for an hour+ after my appointment time.
Once we get to the clinic it’s time for my routine labs. They check a number of lab markers to make sure that I am ready for the infusion. They also pull a lab called CEA which is a marker that is used to indicate cancer activity. Low numbers are better here, and luckily I have had numbers about as low as they get since January. Each time they pull it though is a quick anxiety trip until the result comes back. This week it was a 3. At the peak it was around 250, so I’m happy to see that low single digit again.
This round of infusion I do not see my oncologist beforehand, but I’ll see him next time and we’ll discuss how I’m tolerating the chemo and make sure the side effects aren’t becoming too much.
It is at around this point, as I am writing this, that I feel like things start to go downhilll and I start down the path to feeling miserable for a few days. We’ll go home, I’ll hibernate and come out on the other side on Friday and start slowly feeling better.
Before I go I want to thank you all again for the outpouring of support! A number of you have reached out personally and it has been nice to reconnect! As well, a decent handful of people have signed up to be potential donors and that’s incredible. I am really hopeful that we can find a suitable donor or a deceased donor liver soon and get the transplant train moving. I am getting a little tired of the constant cycle of chemotherapy and would love to get a break from it :)
-Andrew
コメント