Around 2:30 a.m. this morning, I became hazily half-awake from a not-unpleasant dream, about what I don’t remember. I shifted in my groggy sleep. Then suddenly, like a whoosh, came the thought: chemotherapy starts today.
I read for a while, then tried to get back to sleep with no luck. Figuring if I’m wide awake and feeling fine, and soon will be fatigued and feeling crappy, I might as well make the most of it. I got up and made homemade chicken soup to freeze, and this week’s worth of mason jar salads, both of which I’d meant to make yesterday and ran out of time.
Tad & I dropped the kids off at camp, then proceeded up to RB for my treatment. The lab where blood work is done is right inside the front door of the clinic, and I specifically recall being told to swing by there first, at 8:30, where there would be a standing lab order in place for me. The order was there, but when I reminded the phlebotomist about the port that had been installed with much ado, she said, “Oh, we can’t use that! We’re not trained for it! I could KILL you!” Hm. I thought this was part of the reason I’d gotten the port in the first place. So, she drew (with no trouble – I was well-hydrated) from my arm.
With that done, we went up to the oncology clinic and were called back quickly. I met my wonderful oncology nurses who would babysit me for the day, Sandy and Andrea (who was in orientation on her third day in this clinic, having spent years in pediatric oncology at Rady’s). Immediately they said, “let’s do your labs.” Um … yeah, I did them already! Long story short: I think I was told to get the lab done downstairs before we decided to put in the port. Next time, I am to just come straight to oncology. Got it. First “oops” of the day. On the plus side, while I was getting my blood drawn, Dave Buckley walked by (he is a former co-worker of mine). So we had a nice chat, and if I had not got my labs done downstairs that would not have happened.
Next, I explained to them that one of the anti-nausea meds, Emend, was prescribed to me in pill form accidentally – another confusion with the port decision. Once we decided to put in the port, the prescription was supposed to get canceled, but the cancellation did not go through. When I picked up my meds at CVS, it was included in the bag. So last month I spoke to an oncology nurse to find out what I should do with it. She said that since it is an expensive drug (Dr. Cancer later agreed with this), I should take it as directed for this one time. Starting with chemo session #2 I’d get it via the port. We confirmed that there’s not another order in with CVS, but you never know.
Another nurse came in to review all the rest of my meds with me. Another drug called Dexamethasone that I was supposed to start prior to treatment – which, of course, I diligently did – caught her eye.
“How many milligrams have you been taking? Did you bring it with you?”
Of course I did not; I’d brought the Emend, I was so concerned about that; but not the Dexamethasone. (Funny, I brought a lot of stuff with me…) Apparently I had been taking 4mg (one pill) and I needed to take 8 per dose.
The nurses hooked up my port to have it ready to go (not painful, very simple), and sent us off across the hall to our second visit with Dr. Cancer since our one-hour firehose session during which we got the scoop on chemo. I had lots of questions, but first we had to talk more about my second “oops” of the day with the Dexamethasone. Dr. C. was pretty unhappy about that, I guess it’s an important drug (helps with inflammation and possible allergic reactions). They would add some to my IV and I would take the correct dose going forward. Got it. My bad. (Everywhere it says to take two pills, twice a day; my only “excuse” for missing this is that you should SEE all the meds lined up in my bathroom!! It’s a lot to manage and track.)
During our chat I had a few follow up questions about the diagnosis, regarding some decisions made about the lymph node biopsy. But mostly it had occurred to me that I had no idea what the post-chemo schedule is (must update my Gantt chart!!!). So I dived into my list of questions about that. Here were her answers:
- Start radiation: 4 weeks after my final chemo session (expected to be Nov. 29)
- Radiation duration: 7 weeks total (6 to the chest, 1 week for a “boost”)
- Reconstructive surgery: 6 months after radiation therapy ends – UGH!!!
So I need to live with this breast expander until ~August of 2017!!! Oh well, it’s actually not that bad anymore, but it is hard, and it pokes me sometimes. I do kind of like the utter absence of bounce; it’s like a kneecap has been stuck to my chest. (Except not bendy. Not bendy at all.)
Back across the hall in my chemo room – I got a private room for this first round so we could chat; I’ll be in a curtained area next time – we started the pre-meds (Pepcid, since one of the nausea symptoms is indigestion; and the notorious Dexamethasone, 20mg). At that point I “dismissed” Tad and he headed home. I passed the time reading email, ordering presents for Lane’s upcoming birthday party (yes, I have great timing), and reading blogs. I brought tons of stuff with me since I was not sure what I’d be up for.
Finally we were ready for the real deal. There are three chemo drugs, and they are administered in a specific order, one drug at a time. The first to go in was the Adriamycin, which is red, and turns your pee red, and has to be administered via an “IV push,” which I now know is a syringe that is injected into the IV. Sandy did this manually and it took about 20 minutes. I ate ice chips during this phase – apparently this drug causes mouth sores. Chemo drugs are systemic, so they go all throughout your body, including your mouth. Apparently if you chill the blood vessels in your mouth, you slow down the movement of blood there, and they’ll take up less of the drug. I thought that was interesting. (Although the oncology clinic does not have ice chips, they only have big fat ice cubes. Next time we’ll borrow some from urgent care downstairs.)
After a brief break, we started on the second drug, Cytoxin. This was done directly via IV bag and took about an hour. I was feeling generally fine throughout all of this – the side effects from all these drugs will start this evening and peak around day four – but at this point I started to have a headache (my go-to side effect for anything). So I was given a couple of Tylenol.
The third and final chemo drug is the nasty one: Taxotere. This is the drug most likely to trigger allergic reactions, that can be severe. They come on quickly, so the first time receiving this drug, they start it at a very slow rate, then shut it off and measure your vitals. If all goes well, they increase the rate for another period and retake your vitals. I think they repeated this four times. I have always been proud of the fact that I’m allergic to nothing (not even poison ivy, although I have probably not adequately tested that), and apparently Taxotere is no exception.
The last step of the day, after I got unplugged, was to apply a Neulasta “on-body injector.” Neulasta is a drug that increases your white blood cell count, one of the most severe of the chemo side-effects that makes you more prone to catching infections. It must be administered the next day. I further raised Dr. Cancer’s ire when I requested this (I did not hear about the device from her), because in her experience it falls off a lot. Well, my logic is that it may fall off, so I may need to do the 1-hour round-trip drive; but if I don’t try it, I’ll definitely have to do the drive. She reluctantly agreed.
The injector is an electronic device that adheres to your body (arm or belly – I chose belly). Right after it is stuck to you, it sticks a needle in you that inserts a teeny catheter (it felt like a pin prick, not painful), that stays in place until the drug is administered 27 hours later, after which it takes 45 minutes to deliver. When it’s done, you can peel it off (and then take it apart to play with the cool electronics inside, hopefully without pricking yourself).
For the most part I did not experience much discomfort during this first session, although I know that will change. There was the headache, and some mild dizziness; I was tired and fell asleep on the drive home, although I think 2:30 a.m. was more to blame for that than the chemo. I ate most of my sack lunch during the day but definitely have a reduced appetite now as I type this. Hm, maybe some homemade chicken soup will do the trick.