Category Archives: Blog

Yesterday was a good day. Aside from a bit tired, felt the best I had in months: no pain, no sickness, engaged and focused at work. A memory of what being healthy–well, as healthy as my human suit gets–was like.

This morning, thought I was going to have another good day. Felt energetic and chipper, pain free. Went out with Matthew to run a couple errands even. But think I might have overdone it. We were only out for an hour or so, but by the time we got home I had a headache and started feeling sick. Now I am thoroughly miserable and hurting.

Have taken drugs. Many many drugs. If they are helping, then I don’t even want to contemplate how awful I’d feel without them. But honestly, it feels like they’re barely making a dent.

Next week I’m slated to have my second chemotherapy infusion on Wednesday with my neulasta injection to follow on Friday morning. Technically, I should have the chemo on Thursday, but for obvious reasons*, Thursday wasn’t good for scheduling purposes.

Being on the tail end of chemo cycle one, I feel a bit better prepared, expectation-wise, for this upcoming session. Everyone says the first one is the worst. If that’s the case, sure, I got this.

Of course, the one after this one (chemo cycle three) begins the intrathecal (lumbar puncture) infusions. I feel far less cavalier about the prospect of those.

[*Just realized it might not be obvious to folks who aren’t on the American holiday calendar. Thursday is our Thanksgiving holiday.]

Had a follow-up doctor’s appointment yesterday with my oncologist at Emory’s Winship Cancer Institute. We discussed a couple things in greater depth.

The neulasta injection I’m having the day after my chemo infusion is actually not usually given to people my age but rather to folks having to undergo chemo who are over 60. But since my immune system is so fail from lupus/MCTD, my doctor and his team figured it a wise precaution.

Firstly, it’s a bit depressing that they consider my immune system on par with that of people two decades older than me, but more importantly, the injection is the likely culprit for the intense back pain I’ve been having. Glad to have an explanation for that. And also it’s indication that the shot is working. (It stresses bones as it causes a heightened production of white blood cells.)

On a related note, they did blood lab work yesterday, and my blood count is rebounding a-ok from the chemo. Whew. It’s actually in decent enough shape that I’m considering going back to work this week. I’d previously decided to take this whole week off, but I’m feeling pretty good and a bit cabin fevered. (And I think I’m really exhausting Matthew. I keep waking him up in the morning to keep me company but he still goes to bed at his usual night-owl time, with the result that the poor thing is getting really sleep deprived.) We’ll see how today plays out.

We also discussed the radiation therapy I’m slated to have at the end of these six cycles of chemo. We didn’t go greatly in-depth about it, but it sounds like it’ll be fairly rough. Due to the location of the tumor, there’s a decent likelihood the radiation will hit my salivary glands, which could have long-term affects. Sigh.

And, very important bit here, we discussed the jittery feeling I’ve been having. It seems that the anti-nausea medication I’ve been taking every eight hours, Compazine, has “jittery” as a fairly common side effect. I went off it yesterday–with Zofran now as my primary anti-queasy drug to take as needed–and took some Benadryl at bedtime, and I can’t express how much better I feel today. I thought jittery and I were old friends; I’m totally addicted to my caffeine. But this was different, way worse than even the most jangly over-caffeinated binge. I was feeling pretty desperate to find some way to stop the jittery, and having it fading from my system is so very much a relief.

So yesterday I had a consultation appointment with the Winship Cancer Institute boutique about a “cranial prosthesis” (i.e., wig). I tried on several models and have come to the conclusion I really don’t think I’m a wig person. I think I’ll be exploring other options–like chemo scarves and, of course, hats. I never thought I was a hat person before either, though. Maybe I’ll end up going with “bald.” After all, Persis Khambatta as Lieutenant Ilia in Star Trek looked pretty hot…

One thing the consultant did say that hadn’t quite registered before: it’ll be over a year before my hair comes back. Of course it won’t just magically return at the length it is now once chemo finishes. It’ll take time to grow back and all. For some reason, I just hadn’t thought it through. Urg.

So…chemotherapy. The actual session was fairly easy on me. Long, over seven hours of sitting in a chair attached to a tube dribbling toxins into me. But I tolerated it pretty well.

It was afterwards that really nailed me. As soon as I got home, I spiked a fever of 102. Tylenol brought it down to under 100; otherwise, we were looking at a trip to the ER. And since then, I’ve been incredibly drained. It’s taking all the energy I have to write this blog post. I’m a combination of incredibly exhausted and jittery. I’m not sure if the jittery is from the prednisone or the other chemo meds, but it’s a really unpleasant combination.

Also, my mouth is terribly dry. Food tastes weird…or doesn’t taste at all. But on an up note, the anti-nausea drugs appear to be doing their job. So far, no queasy. *crossing fingers*

Today is better than yesterday. And yesterday was better than the day before.

Appointment with my oncologist today at Emory’s Winship Cancer Institute went pretty much as expected. All the results from the surgical biopsy still haven’t come in yet, but we’re starting treatment on Thursday anyway. If the biopsy results reveal some potential oddities or unexpectedness, we’ll add meds to the chemo cocktail. But the core treatment will remain the same, and consensus was that it was best to start treatment now (a bazillion yeses!) rather than wait any longer.

My treatment regime is currently slated to be six, 21-day cycles of the R-CHOP chemo cocktail (rituximab, cyclophosphamide, doxorubicin, vincristine, and prednisone) followed by radiation. Four of those cycles will be delivered directly to my cerebral spinal fluid via lumbar puncture…sigh. I’m also getting a neulasta injection after each chemo infusion to try to bolster my immune system since it’s already pretty compromised starting off the bat.

My first treatment, this Thursday, is expected to take something like seven hours (o.O!), although subsequent ones should be faster–five-ish hours or so. Debating if I should bring my laptop, try to get some work done, or if my smartphone and a book will be sufficient to keep me from imploding out of boredom.

Aside from the side effects I expected–nausea, hair loss, other various GI distresses, etc.–my doctor also said that the chemo might trigger early menopause. I wasn’t prepared for that possibility. Children were never an option for us, so early menopause isn’t really a devastating prospect, but I was kinda blindsided by the idea of it–having to deal with all the changes that come with menopause in addition to everything else.

My oncologist also said I need to avoid crowds in order to decrease the chances of me picking up a random infection or bug, which we already knew, but we hadn’t quite made the logical repercussions step.

I take the train to my day job. Public transportation is pretty much the definition of crowds.

So, for now, the plan is for Matthew to drive me to the capitol during my treatment on those days I’m well enough to go in. Also, I might ask my work folks to see if I can get a temporary parking space for the next six to eight months. I relinquished my spot in the capitol’s deck several years back when they jacked the price up. Not really keen on having to get a space again, but not really keen on having poor Matthew chauffeur me every day, either.