THE SIDE EFFECT LIST!

I have been keeping careful track (and by that I mean nightly scrawlings on a post-it note by my bed) of my post-chemo symptoms this time and so I present to you THE SIDE EFFECT LIST! Surely not as historically significant as, say, Schindler’s List, but certainly more current.

Day 1 is always a Wednesday, so if you are ever wondering how I am feeling on a day within a week after a chemo, this should be a handy guide.

Day 1 (Admin Day) – headache, tiredness, night sweats – a breeze!
Day 2 – tiredness, night sweats – overall I feel pretty good, normal. It’s the calm before the storm.
Day 3 – night sweats, fatigue, dizziness, nausea – start to feel vaguely unwell.
Day 4 – night sweats, fatigue, dizziness, nausea, weakness, fuzzy tongue, constipation, depression – one of my worst days, physically and emotionally. Don’t feel like myself at all.
Day 5 – fatigue, dizziness, nausea, weakness, fuzzy tongue, constipation, bitter taste – another physically low day. By this day I start to get bored and grumpy.
Day 6 – tiredness, dizziness, weakness, fuzzy tongue, constipation, depression, bitter taste, indigestion – probably my worst day. And it’s a Monday. No longer fatigued enough to nap or sleep well, but feeling to crummy to go out, I just feel lonely, angry, bored, and stir crazy.
Day 7 – tiredness, nausea, weakness, fuzzy tongue, bitter taste, indigestion, cramping, bone pain – finally feel more or less well enough to go out in public but it’s a stretch.
Day 8 – tiredness, weakness, fuzzy tongue, bitter taste, indigestion, diarrhea, cramping, fuzzy mouth – definitely on the upswing at this point but the continuing stomach issues really put a cramp (pun intended) in enjoying life.

Today is Day 8, so I will have to update this in a few more days, but if it’s like last cycle, the symptoms will continue to fade over the next couple days until I feel 100% just in time to get shot full of chemicals again! I am grateful that I don’t have a lot of the side effects others seem to – my nose hair is hanging tight, for instance, and I have two TINY cankers in my mouth, but my mouth isn’t filled with sores or anything. Still, chemo makes for some pretty crummy weeks.

Inside the shell.

I’ve never wanted so much to crawl outside my own skin until the last few days.

I feel trapped, and it’s so depressing.

I am not myself. I can’t climb two flights of stairs without exhaustion. I can’t interact with my kids the way I usually do. I just heard my three year old tell my mother that he is “going to the cancer store.” My 18 month old won’t sleep through the night anymore. I have tried so hard to be the same old mom but the chemo is doing just what I thought it would: it’s taking away my sparkle.

It’s hard to explain, how I feel. I am tired all the time. “Fatigue,” they call it, but that doesn’t explain it. Everything wears me out. I am so tired that I nap every day but when I wake, somehow I feel worse – dozy, nauseated, out of sorts. I am bored and stir crazy, but I look strange and feel worse, so I don’t want to/can’t go out. TV and books have lost their allure, which is why I’m writing – maybe it will be an outlet. Maybe it will relieve the pressure.

Food tastes and feels weird. My tongue feels fuzzy and if last cycle was any indication, the roof of my mouth will soon follow. I feel thirsty but when I drink it tastes weird and doesn’t seem to quench my thirst. My body seems incapable of doing or accepting anything properly. I feel like an alien trapped in human form. I keep trying to give this body things that will make it feel better but nothing seems to help.

We curse the little ways our bodies fail over the years, but there’s nothing like a full-system revolt to put things in perspective. And there’s no predicting how things will go. Saturday was horrible, yesterday was better, and today seems worse. How?

My doctor said he wanted to do at least 4 cycles of TC, up to 6 if I could handle it, and I don’t know if I can. And that makes me feel two things. One, like a failure. A wimp, a loser, unable to face something tough. And two, worried, because what if I get cancer – what if it comes back? Will I be left kicking myself for not doing 6 cycles? Probably.

This is a lonely time. These are dark days. Mostly I feel grateful, lucky, accepting. But sometimes I feel trapped inside this sick body and I just want to run.

Chemo I: Administration

FIRST CHEMO TODAY!

InstagramCapture_890b3d66-ea4c-4917-9f68-06c49f70b7f4I think I’ll do two posts on these chemos. Because let’s face it – there’s the administration, and then there’s the side effects.

I went in today scared as hell. It was nothing. They numbed the port site with Lidocaine to take my blood and until the Lupron shot, that was the worst pain I had.

So, first: Took two dexamethasones before bed and two in morning before chemo to help avoid allergic reaction. Side effect is insomnia – didn’t have that problem.

Next: Blood work. NBD. No weird taste from saline, which they warned me I might have.

Next: Pre-meds – a combination of two anti-nausea drugs (Emend and Aloxi) and one steroid (Dexamethasone), again to combat allergic reaction. No side effects except for some pain in my port shoulder. VERY mild. I wouldn’t even notice it except for the fact that they told me to report any and all condition changes.

Next: Taxotere. The baddy, this is the one with the more severe side effects of the two chemo drugs (and the one which WILL, the nurse informed me, cause me to lose my hair. “I thought a lucky 20% don’t lose their hair?” I asked her. She looked at me sympathetically. “Well – true. But you will definitely lose some.”*) I had zero reaction to this. Two nurses stood and stared at me while they started the drip and stayed there for about fifteen minutes till they were satisfied I wasn’t going have a seizure or anything, and the next 45 minutes were SUPER smooth sailing, occupied mostly by responding to kind, loving, supportive, and awesome posts and texts from my friends and family (seriously, thank you)!

Next: Potbelly Sandwiches, courtesy of my husband. Not part of the regimen, but it will likely become one.

Next: Cytoxan. They warned me I could get a sinus headache and I did almost immediately. Weird tingling in my nose followed by what felt just like sinus drip (but chemical-y), then slow build of pressure in my head. They slowed the drip and it relieved all but a mild headache. This was another hour, during which Jules and I started watching Trainwreck (it’s all right so far, nothing I’d recommend unless you were bored and wanted something brainless).

Next: Lupron. IN THE ASS. This has to be absorbed through the muscles so I had to get an injection. Seems sort of unfair with this perfectly good port (which by the way, as everyone said, is my best f**king friend after today – no IV!) but nurse’s orders.

After: Slightly dizzy, slightly nauseated, slight headache. Tried to take a nap but couldn’t. Julian sure could.

Now: Still headache, and feeling slightly logy (which may just as easily be a result of the emotional build up as of the meds). Just took some Advil to combat it.

Tonight: Another steroid pill, then two a day for the next three days. Zofran if needed for nausea. If that doesn’t work, Ativan.

TL;DR: Chemo administration was a piece of cake. I am home and well other than a slightly bothersome headache and some fatigue.

Now comes the hard part – side effects. Or will there be any at all? Stay tuned to find out.

*I have had several hair stylists offer to “thin” my hair over the years. I have more hair than God. It’s fine, so it’s super soft, but it’s so incredibly densely packed together that it breaks rubber bands, hearts, and expectations. I have always refused because I was concerned about what the grow out and maintenance would be like. I told Julian, “You know what’s going to happen? My hair is going to thin, become totally lovely and manageable, and I’ll be asking for more chemo to keep it that way.” Jk obviously, but it’s a nice thought.

Tomorrow: Chemo

Tomorrow is the big day – chemo session number one. I have been seeing my BC sisters struggling through chemo, being hospitalized, feeling defeated, vulnerable, and it has prepared me for the worst. Still, I keep hoping for the best – a friend told me his Dad had chemo and was never sick nor did he have any side effects. It happens to some people. Why not me? Keep sending me those warm, fuzzy vibes.

As a refresher, tomorrow I will be getting TC (taxotere/cytoxan) chemo for 3 1/2 hours, beginning at 8am (although I think the actual chemo part doesn’t start till 9ish – check in and blood tests first). I will be getting it through my portacath, which incidentally is still sore. I will also be getting Lupron, which shuts down my ovaries. Studies have shown this helps preserve fertility in pre-menopausal women. Additionally I believe this will also block estrogen from reaching any of those little ER+ cancer cells that might be hanging out anywhere. Down side: I’ll basically be menopausal, with all the awesome symptoms of that, for the duration of the chemo.

I talked to my doctor and we have opted to go cycle one with no Neulasta or daily shots. I am young and healthy, so he says he will check my WBC count before the next cycle. If numbers are good, we can avoid the side effects of those meds. If not, he says he will “have to encourage” me to get them.

Right now the biggest issue for us is everything is the unknown. Will I get sick? How sick? When? Will I lose my hair? All of it? Some of it? My eyebrows? Will I get fat? Lose weight? Be nauseated? Constipated? Have diarrhea? Anything is possible. Nothing is possible. Which makes it all rather impossible.