Chemo Days

It is surprising to me how much chemo has taken over my life. I thought, when I heard that it would be every other week, that it would probably occupy me on treatment Thursdays and maybe the weekends after, but the reality is more like this:

Thursday--treatment
Friday--Tuesday or Wednesday--treatment side effects

So really, I am spending every other week preparing for, having, recovering from, or managing chemotherapy.

That is an effing lot of time on chemotherapy, especially since Andrew is still in the hospital.

So I guess it is inevitable that sometimes I feel that rather than living my life and just getting chemo here and there I am actually living in a succession of chemo days, really, colored by the following truths:

1) Eating a little protein all the time is very helpful;
2) I have lost and gained the same 9 pounds every cycle;
3) Steroids are probably the reason for the gaining and losing;
4) I have lost my taste for coffee and I really don't care.

Things I do care about:
1) Feeling trapped at home;
2) Making sure Jamie's life is as normal as possible;
3) Asking for help even when I don't want to do it.

Yesterday I called my wonderful sister-in-law and asked her, in a hiccuping, snotty-crying kind of way, if we could just drop in at, oh, dinner time. Not that we would be eating, no. I eat way before dinner time and I would be bringing Jamie's dinner with me, but still. Just dropping in around dinnertime because I felt like crap.

Definitely not something I would have seen myself doing even a month ago.

So of course she said yes and Jamie got to play Portal with his Uncle Andy and Kerry gave me hot chocolate and talked to me until I was calm. And then she drove her car behind mine because mine's "check engine" light came on all of a sudden as I drove out to her house. As I drove I reflected on the necessity of asking for help. Even demanding it. A good thing to have learned during my chemo days.

Detour

So this post isn't really about cancer at all. Feel free to wait until the next one.

Andrew is in the hospital--he came out for a visit during his fall break and he wasn't doing well, so he checked himself in, brave man. This is the fourth time in less than a year and half that he has had to go through this, and he is in the process of applying for leave from his job from the rest of the semester.

Out of nowhere in spring 2013 he began dealing with anxiety, depression, and other health issues. Note that I am not saying mental health, because I hate that term. His health was suddenly not what it had been, and that continues.

It's pretty bad and it is part of the reason that I moved out here, because I thought that we needed a family network around us. I wasn't doing such a great job of taking care of both Jamie & Andrew, and I was missing a lot of work, even with the help of our dear friends in Washington and great support from my colleagues at Evansdale Library, and then this new job opened up and I was so grateful that I got it and happy to come back closer to home.

All of these are good things, but I just want to say that hiding things like depression and anxiety, which is what I've been doing with respect to Andrew, really does make them seem worse than they are. As soon as I began telling people about what was happening in real life I found that they were very supportive and many knew or had experienced similar things themselves. Bottling things up created a sense of isolation that was greatly ameliorated when I began talking about how Andrew was doing and how he was feeling.

Today he is not doing well and he is not feeling well, but he is safe. And I hope that soon he will be more than safe.

If you know Andrew, you might be surprised to read this about him. because he has typically been a sunny person. But he is going through a hard time right now, so please think good thoughts for him.

I feel like crapola

I am scheduled for 8 dose-dense chemotherapy treatments, meaning that, as my oncologist explained, they are doing a very aggressive schedule of chemo. Every other Thursday from September 25 through January 8 or so I will be passing through the Gates of Hell. Each trip is broken into 3 separate appointments: blood draw in Blood Draw, pep talk with oncologist, Infusion in GoH. Depending on my schedule or theirs it takes about 2 1/2 hours.

All fed up for Chemo #2

The first time I went my symptoms, which turned out to be a first-trimester grade of nausea and dizziness, kicked in about 3 or 4 hours after I got home and were pretty bad for about 48 hours. At one point I fell over, Bridget Jones-style, wrapped in my comforter. I didn't get hurt but when I offered the information to my parents that I had totally lost my balance during my nap they looked at each other and my mom said in a tone of mild amazement, "So THAT'S what the thumping was!" Um yes. That's what the thumping was.(Lest you misunderstand me, my parents have been a source of continual comfort and support throughout this entire experience and I have no doubt that if I had shouted for help, they would have come. As it was, I was a little embarrassed, thumped as quietly as possible, and preferred levering myself to my feet with the help of my cocoon, is all.)

Based on the intensity and sudden onset of my symptoms--do I sound like a dr? no?--I thought maybe doing chemo on an empty stomach was the reason for their ferocity and so I determined to fill up on lunch and treats beforehand, and also to bring treats with me. In case eating before getting very strong medicine seems like an obvious way to head off the pukes, let me just defend myself, I mean briefly explain, that prior to my first chemo I was told  a) to eat normally and I did, I ate breakfast and probably a snack and b) that "food would be provided," and it was, but it wasn't gluten-free, and I have Celiac disease, so I just ate ice cream and chips (I might never eat chips again, or ice cream in those little adorable cups, the thought makes me both want to hurl and weep with regret) and suffered for it.

So this last chemo time, nearly a week ago now since this is Wednesday! (I can't believe I still feel so rotten)I ate a big plate of risotto beforehand and brought lots of treats (pics to come). And when I got home I felt fine. And Friday I felt great! So great I wished I had gone to work...and here we are on Wednesday, when hordes of zombies could attack my library and I'd go free because I have no brains to eat. Brain free, chemo brain, queasy stomach. All of which visited themselves upon me Saturday afternoon or evening. So I was able to stave off my misery for awhile, but not forever. However, I still like not feeling like crap right away, so I'll be using the feed-beforehand strategy again.

Abandon hope all ye who enter here, plus I have a wig

So I went for my chemo teaching session  and IT SUCKED. The only good part was the tour, which featured people doing things like sleeping, chatting, and reading while getting poison poured into their bodies.

Turns out that what I thought would be a helpful explanation of what was going to happen to me on chemo day was more like a "you have been warned" kind of thing, at the end of which, you sign a form saying that you get it, you're agreeing to poison yourself under medical supervision, and you won't sue anybody if it kills you. Ha! See how I did that?

Here is what I found out:

1. Infection is to be avoided at all costs, but live my life as normally as possible
2. My pee will be red for a few days after chemo, but if blood appears in my urine, it will not be difficult to spot and I need to call the doctor right away (not sure which one though)
3. No ibuprofen, no acetaminophen, no NSAIDs of any kind. Nothing that will mask or artificially lower a fever. Back to narcotics if I have any kind of expander-related pain (which I sometimes do, like yesterday after spending an hour on my left side during the echocardiogram, my left foob swelled up and I'm still pretty uncomfortable). Which means if I don't want to be tooling around CoMO high as a kite, I'm either in for the duration or toughing it out. Thankful for my moderately high pain tolerance.
4. No booze. I figured, but still.
5. There is a large handout with the ominous title Chemotherapy and You waiting to be read. And it will probably be waiting for a long time. 
6. Claritin might prevent the bone pain that Neulasta will cause, but you have to take it ahead of time. Ask your oncologist. 
7. Why isn't my Neulasta shot scheduled yet? (I am actually terrified about this. Neulasta boosts your white cell counts and thus your immune system. White blood cells, for those who copied from encyclopedias relied heavily on outside resources to write their biology term papers and thus don't remember what those are, don't live long and the chemo kills them alongside the bad things it's supposed to kill anyway. They die like flies, but also breed like rabbits (if all goes well) under the influence of Neulasta.)
8. Hand sanitizer.
   
   But not the kind with alcohol in it. (or is that shampoo for my new wig? (Image from http://www.wikihow.com/Use-Hand-Sanitizer).
9. But live your life as normally as possible, especially since "you have a little kid, right? I thought I saw that in your notes." Um, yes I do. And he is in a serious nose-picking phase right now. So. 
10. Getting a port put in is minor outpatient surgery. 

This sucker is subcutaenous. They went in through the jugular vein in my neck to put it in, just above my left expander. I heard the whole thing but was too high to care, thank goodness. My sister was disappointed because there is, apparently, a tradition of naming chemo ports that is rendered moot by having them under the skin instead of out where everyone can gawk at them. Image from http://www.angiodynamics.com/products/smart-port-ct.

So that's my overdue report from the Gates of Hell, aka the Ambulatory Infusion Unit, where they ply you with chocolate ice cream, let your parents come with you to chemo, and generally make you as comfortable as possible while administering carefully calibrated amounts of cancer-killing toxins into your system. Side effects may vary. In my case, I started puking about 4 hours after my treatment.

Quite a cliffhanger, huh? More soon. Note I didn't give any details about my wig:

Wigstand decorated by Jamie w/a Sharpie.