My last day of active treatment! My last shot of bleomycin! It is Monday, October 20, 2014.
I got up, showered, said my daily prayers, made breakfast, got the baby up, and was excited for my last treatment! Well, “excited” isn’t the word, exactly. But I’m excited to get it over with. In at 10:30am, should be out by noon, then meeting a friend who’s in town from VA for some lunch at Primanti Bros.!!!
Baba Jackie came over at 10am and I got ready and was out by 10:15. Couldn’t find parking and didn’t want to deal with the valet, or the $5 cost when it shouldn’t be more than two hours, so finally found a spot a few blocks away, across from good old Ritter’s, and put $2 in the meter. I ended up being 10 minutes late, though.
They took be back right away and got my BP and vitals. I lost 3lbs since last Monday. A sixth nurse attended to me today. Maybe the best one yet. She got me stuck and took blood with ease. She used a hot compress to get the vein on my left arm all happy before she got in there with the needle and IV.
I’m supposed to meet with my oncologist’s nurse (ON) today to discuss my aftercare. I want to know when I can get a flu shot and when I need to get blood drawn, and I want the script for the blood draw. Instead, I’m given an envelope with my name on it with the scripts. I ask the chemo nurse (CN) what I’m supposed to do, and she says, “Didn’t your doctor tell you?” No. He didn’t. In fact, I haven’t seen him or any of his team at all while in chemo. I would say that on four out of seven chemo days, my roommates’ doctors or someone from their team have checked in on them, but never anyone from mine. I told her (CN) my ears were blocked and ringing too. She (CN) was surprised my doctor didn’t know about this, too. I said I hadn’t seen anyone. She called the nurse (ON), who I actually had called last week and who was supposed to come see me this morning, only to be told by the nurse (CN) that the ON said I knew what to do (per our conversation last week, in which she (ON) told me she’d tell me in person today…), and that she (ON) was too busy to see me. Now, I’m a bit annoyed by this lack of personal attention. I suppose there’s nothing they can do for my ears and other side effects, but you’d think they would have checked in on me at least once. You can only advocate for yourself.
Over the weekend, the vein on my right arm that I had the IV in for the five straight days of E and P – the champ of a vein – turned all red and got hard. I’m having a delayed injection site reaction. Alison told me to ice it.
The line is to the right of the red hard vein.
I asked my (CN) nurse about it and she said the EP chemo is super toxic and really causes a lot of damage in the vein. This vein is now pretty much useless for any kind of IV again, maybe like ever again. But it should heal in time. I take “in time” to mean many months’ time. It was itchy and painful, but that has subsided. Sometimes it still feels a bit itchy, but otherwise it’s just this hard red line. She told me to put a hot compress on it. Conflicting nurse opinions.
Another fun fact: my beard hair is coming out. Last night I was stroking my beard and found little hairs on my fingers. Then I gave a pull and got lots more. Usually it hurts to yank on my beard hairs, so I know this is it. The real deal. My top of head hair is doing ok though. Interesting.
After waiting for over an hour for my blood test results, I was starting to wonder what was going on. I see the nurse as I go for a bathroom break—remember, it’s important to flush the kidneys—and she tells me my Absolute Neutrophil Count (ANC) is low. It’s 600. It should be well over 1000. They’re waiting to hear what the oncologist has to say, whether I can get the bleo or not. This has been the great delay. Neutrophils are the parts of the white blood cells that fight infection. I am now at great risk of infection. This can happen around 7-10 days after starting treatment.
I text Alison this news, and my friend whom I’m supposed to lunch with. He’s going to the Stillers game tonight, and so I suggest we cancel. We reschedule for breakfast tomorrow. I’m now kind of disappointed. And more than a bit annoyed. I really wanted Primantis. And to be done with chemo.
Finally, around 1pm, they clear me for the bleo. I get it and finish up around 1:50pm or so. Alison comes to check up on me and make sure I get the right information.
The low ANC means I have Neutropenia, low Neutrophil count. To avoid getting an infection my body cannot now fight, I am to avoid: raw vegetables, raw fruit, undercooked meat, poultry, and fish, homemade pickles (not cool), anything not overcooked or not canned or frozen then cooked to hell, dippy eggs (sad face), raw cheeses, raw milk (ok, these aren’t normally a problem, but still), crowds of more than eight people, animal urine and feces and saliva; also, I should not handle my child’s feces, vomitus, or urine (or any diapers – a blessing in disguise? Actually I don’t mind changing diapers), concerts, bars, theatres, public spaces, hipsters.
My favorite line from my directions is: “If you are out and strangers are within 3 feet of you, you are in a crowd. Make sure you can step back or walk away if there are strangers around you.” I think I can go to church, but I will have to not give Communion and not ablute (clean) the chalices afterwards. Part of this is because we use wine to clean the chalice and I shouldn’t be drinking that. I will not get into the whole “Communion spreads/doesn’t spread disease” debate. I believe it does not. Studies have shown it does not. But I need to be careful nonetheless because people grab and kiss the chalice – really, giving Communion in the Orthodox Church is a contact sport, and how it will go is unpredictable at best. It is also a great blessing. But the Orthodox priest and deacon must be more vigilant than the best defensive line when handling the chalice. I will ask to be excused from these duties for a few weeks.
I am to avoid using a razor and cutting myself. After reading this, I ironically got a paper cut from the very paper urging me to avoid cuts.
I got home around 2:20pm and ate some lunch. I broke one of the rules, though, and ate a pork chop and veggies from last Tuesday—I shouldn’t eat anything older than two days. Oh well.
As the afternoon went on, I got progressively more fatigued. I started to feel like I was getting sick. Developed a headache. Took some Tylenol. Got nauseas and took a Zofran. Then today’s IV site started getting itchy.
By 7pm, I was dog tired and just feeling beat up. The last blast of bleo wasn’t going out without a bang, I suppose. I drank a half gallon more of water—they recommend two to three quarts per day. I shoot for a gallon if I can.
I watched a movie, relaxed, froze and shook, felt like I had the flu. Alison took the baby to the Goodwill for some clothes shopping, but now she is feeling ill, too.
By 10:30pm, we’re both in bed, and I’m trying not to accidentally get sick from her. If Alison has even a cold, and I get it, I can be in some serious trouble. Like extended stay in the hospital trouble.
The night is full of chemo dreams again. I’m up every few hours. The first time I got up, I thought for sure it was morning because I slept really hard. It was only 1am. That’s the worst part of chemo sleep. I just want to sleep the night through and get up. It’s not sweet dreams and restful sleep at all.
I finally get up around 8:30am, and the baby gets up a few minutes later. I want to take a quick shower because I’m taking her for a play date and meeting my VA friend for breakfast. I get her milk and the cat cries to go out on the back porch/catio. I don’t let him out because I want to shower and not leave the door wide open. The cat is mad. So mad that he marches upstairs and poops all over my pajamas. Then the baby poops. Remember, I am not to touch the feces of human or animal. Great. I pick up the poop and clean up the baby and scrub hard. I couldn’t find the gloves, either, so I just hope I don’t contract anything. I no longer like animals.
I get the baby to the babysitter and meet my friend at Pamela’s. I am forced to order scrambled eggs, which is, in my opinion, a waste of eggs. At least the potatoes are stellar. I am telling my friend about how my top hair is staying in but the beard is coming out. I give a pull on top and beard to show him. We laugh. I say, “See, it’s only there” and grab my chest hair and yank. Oh. I pulled out a handful. No pain. We start to laugh quite a lot. OK, so the chest hair is coming out, too. All my “man” hair is coming out, but not the top. So strange.
I just grabbed some chest hair to show you.
Otherwise, though, I’m feeling much better today. Maybe it’s the acetaminophen I took this morning. Maybe I’m just feeling better. I then go food shopping. By the time I’m done, I’m feeling the fatigue. Now I’m home and writing this blog and feeling pretty tired.