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.

The worst part

I am bald now. Totally bald. Well, I have some fuzz, like a downy duck, as my mother said. But for all intents and purposes – bald.

But I’m getting used to that. It’s not the worst part.

The worst part is my three-year-old asking me on a daily basis, “Mommy, are you sick today?” And me, without a good answer.

Chemo I: Administration

FIRST CHEMO TODAY!

I 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.

Oncotype DX Results

Agh okay so I don’t feel like blogging this. I don’t know why, just not feeling it. So it will hopefully be pretty short and succinct.

My Oncotype DX results finally came back. My Recurrence Score Result is 22 (out of a possible 50) which puts me just above the low range in intermediate. Good news/bad news situation. Let’s do bad news first and get it out of the way.

BAD NEWS
They don’t know what to do with intermediate peeps. Low means chemo won’t have any effect on you; high means chemo has definitely decreased recurrence rates in the majority of patients in that group. Chemo on intermediate patients helps some and doesn’t help others. Researchers are still working on identifying what the factors are that cause the difference, but they don’t know yet. So being that I am intermediate, it is now our choice to do chemo or not – and it may or may not have any impact on whether or not I have a recurrence of cancer.

GOOD NEWS
My cancer is/was high grade – it got a score of 8 out of a possible 9. (What can I say, even my cancer aims for the stars.) With that in mind, me getting a low intermediate result on the Oncotype test is really amazing! It could have easily come back high grade, which would have meant definitely chemo, definitely hormone treatment, and STILL a possible recurrence. So we’re in pretty good shape!

We met with a final doctor today, Dr. Ellis. She was GREAT and is also in Dr. Kaplan’s office. I think we’re going to stick with Dr. K – I really liked his manner. He was very easygoing and essentially gave the impression that all of this is a formality to me recovering 100%, which just really put me at ease. That said, Dr. Ellis was the first one to see my Oncotype results so she was the one who gave me her best ideas for my treatment. I called Dr. K afterwards and we chatted and he is basically of the same mind, although we have an appointment scheduled with him for next week to formulate a solid plan.

It looks like (and again this is just a rough guess right now) I may be able to avoid Tamoxifen (which my gut says I should do), IF I do 4 cycles of TC chemotherapy accompanied by Lupron to suppress my ovaries (and, according to Dr. K, help preserve my fertility). Plus of course the radiation. This would mean 3 months of chemotherapy – one administration of the drugs every three weeks for four times total. Typical side effects that you probably already know about, plus the added benefit of it possibly sending me into permanent menopause (although Dr. K thinks at my age I may make it through just fine).

I think that’s pretty much all the data I have right now. I am nervous and scared but also glad we can finally move forward with this. I am second guessing myself all the time and sometimes the overwhelming amount of information we have – and don’t have – makes me just want to say, “Screw all the treatments, I’ll take my chances.” But I have to do what I can to make sure this doesn’t take me down, for my family. I guess the most annoying part is they cut out a very small, very early lesion – along with a perfectly good lymph node! – so I feel like I am cancer free. So WHY do I have to do all this additional crap that’s going to make me feel, well, like crap? I feel good now, why do things that make me feel lousy?

Just things I have to deal with, I guess.